ia
This Page Intentionally Left Blank
il
n
Library of Congress Cataloging-in-Publi~ation Data innovations in end-of-life care: practical strategies and international perspectives / edited by Mildred Z. Solomon, Anna L. Romer, Karen S. Heller, foreword by David E. Weissman. p; cm. Includes bibliographical references and index. ISBN 0-913113-92-1 (pbk.) 1. Terminal care. I. Solomon, Mildred Z. 11. Romer, Anna L. 111. Heller, Karen S. [DNLM: 1. Terminal Care. 2. Advance Directives. 3. Dementia. 4.Pain, Intractable-therapy. 5. Patient Care. WB 310 I58 20001 11726.8 .IS5 2000 362.1’7S---dc21 00-02873s
Copyright 02001 by Education Development Center, Inc.
All rights reserved. N o part of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, micr~~filming, recording, or otherwise, without written permissiotl from the publisher.
parts of this book appeared in a slightly different form in the electronic journal Innovations in End-o/%jii Care at
<www.edc.org/lastacts>and in the Jcxmtal of Palliative Medicine. Cover image courtesy of NASA Space Photography. All papers, comments, opinions, findings, conclusions, or recommendations in Innovations in End-oj%jk Cure are those of the authods), and do not constitute opinions, findings, conclusions, or recommendations of the Publisher, the Editors, and the editorial staff.
Printed in the IJnited States of America.
Photograph Acknowledgments: Part One: Introduction. “Dream of Recovery” 02001 Eleanor Rubin, Woodcut medium, 19” X 26”. Photo by Louise Webber. Part Two: Hospice in Prison. “Angola Prison, 1998” 01998 Phillipe Cheng. Part Three: Intergenerational Approaches to Hospice. “Busy Boy Pauses for Grandma’s Kiss” 02000 Maureen Hoyt, Hospice Volunteer. Photograph taken at The Hospice of Martin & St. Lucie Residence in Stuart, FL. Part Four: Working Towards an Integrated Model ofI’alliative 19” X 2Cill. Photo by Louise Webber.
Care. “Lost SelP‘ 02001 Eleanor Rubin, Woodcut medium,
Part Five: Measuring Quality in Palliative Care. “Mother and Daughter” 02000 Maureen Hoyt, Hospice Volunteer. Photograph talcen a t The Hospice of Martin 8r St. Lucie Residence in Stuart, PI,. Part Six: Pediatric Palliative Care. “Pediatric Oncology” 01993 Daniel Grogan. Part Seven: SpiritualityinEnd-of-Life Louise Webber.
Care. “Taking Leave”. 02001 Eleanor Rubin, Woodcut medium, 19” X 26”. Photo by
Appendices, Contributors & Interviewees. “Into the Light” 02000 Hilary Behner.
CONTENTS CO?2 t mLt tors
Editorial Board Foreword Neil MncDonald, CM, MD Ack f zO Z L7ledgments
PART ONE: INTRODUCTION Notes from the Editors Karen S. Heller, PhD, Anrzn L. Romer, EdD, David E. Weissman, MD mad Mildred Z. Solomon, EdD Editorial Volunteerism and Healing Community Characterize Excellence in End-of-Life Care Bruce Jeiamhgs
xi
xv 1
3
7
PART TWO: HOSPICE IN PRISON
11
Edi forinl Dying Inside the Walls Margaret RatclzrJ MSW
13
Featured Iizuovation (AHA Circle of Life Award Winner) Hospice in Prison: The Louisiana State Penitentiary Hospice Program Tanya Tillman, RN
17
Peiaso? i d Reflectio12s Room Nuiiiber Six Jam,es West A Security Officer’s View of the Louisiana State Penitentiary Hospice Program Colonel Sam Smith Security’s Role in Hospice Care Colonel Darren Borclelon Selected Bibliogiflnply
35
37
39 41 V
vi
CONTENTS
PART THREE: INTERGENERATIONAL APPROACHES TO HOSPICE Editorial Mutual Developmental Benefits for Teen Volunteers and Persons at the End of Life Anna L. Romer, EdD Featured Innovation (AHA Circle of Life Award Winner) The Hospice Teen Volunteer Program at The Hospice of the Florida Suncoast An Interview with Sandra Mahood, BA Ed
43
Personal Reflections On Being a Teen Volunteer Justin Lo Learning to Value Every Moment Emily Tibbetts End-of-Life Care: A Personal Reflection Brenda Corace
73
Promising Practice St. Thomas Hospice Junior Volunteer Program Anna L. Romer, EdD
85
45
53
77 81
In ternati0nal Perspective Volunteerism in Italy An Interview with Claude Fusco Karmann Selected Bibliography
102
PART FOUR: WORKING TOWARD AN INTEGRATED MODEL OF PALLIATIVE CARE Editorial The Growth of Palliative Care Worldwide Presents Ongoing Challenges Eduardo Bruera, MD Featured Innovations Palliative Care in Spain: An Evolving Model An Interview with Carlos Centeno, MD, PbD Designing and Sustaining a Palliative Care and Home Hospice Program An Interview with Charles von Gunten, MD, PhD, FACP
105
Selected BibZiography
131
PART FIVE: MEASURING QUALITY IN PALLIATIVE CARE
135
Editorial Institutional Accountability in End-of-Life Care: Organizational Leadership, Measurement, and Consumer Demand Mildred Z Solomon, EdD
137
107
111
119
143 Featured Innovation Measuring the Quality of Care in Palliative Care Services An Interview with IreneJ Higginson, B Med Sci, BMBS, FFPHM, PhD
CONTENTS vii
I nterna ti0I ta1 Perspective Using the STAS in a Palliative Care Unit in Cremona, Italy An Interview with Franco Toscnni, MD Selected Bibliography
155
PART SIX: PEDIATRIC PALLIATIVE CARE Editorial Pediatric Palliative Care: Coming of Age Cjvtda Hylton Rusbton, DNSc?RN, FAAN
165 167
Fea t i 1red I?inovntion Integrating Palliative and Curative Approaches in the Care of Children with Life-Threatening Illnesses An Interrtiezu with Ann Goldinan, MB, FRCP In ternntional Perspective The Children’s International Project on Palliative/Hospice Services (ChIPPS) Ai2 Interview with Marcia Leoetozun, MD Selected Bibliography
171
163
183
194
PART SEVEN: SPIRITUALITY IN END-OF-LIFE CARE
199
Editorial Integrating Spirituality into Health Care Near the End of Life Laurence J. O’Conn.el1,PbD, STD Featured Inno vation Taking a Spiritual History Allows Clinicians to Understand Patients More Fdly An Intetwieu) wit19 Clwistinn M. Puchnlski, MD Personal Reflection Being and Doing: Adding a Spiritual Dimension to the Practice of Anesthesiology Mary Kraft, MD, MPA
201
Intern2a ti0nal Perspectii)e Vaisnava Hindu and Ayllrvedic Approaches to Caring for the Dying An Itztervieu) with Henyy T. Dom, PhD (Hnri-dhamn) Selected Bibliogrnpby
223
PART EIGHT: APPENDICES
235
APPENDIX A: American Hospital Association (AHA) Circle of Life Award Celebrating Imzovation in End-of-Lzye Care
237
APPENDIX B: Targeted Resources and Tools
249 299 313 323
APPENDIX C: End-of-Life Care Websites
Contributors and Core Team Index
205
219
23 1
This Page Intentionally Left Blank
I n n o ~ a t i o nin~ End-of-Life Care: Volume 2 Core Editorial Team Mildred Z. Solomon, EdD, Editor Anna L. Romer, EdD, Editor Karen S. Heller, PhD, Editor David E. Weissman, MD, Editor Samantha Libby Sodickson, Staff & Art E4ditor
Contributors to Volume 2 Colonel Darren Bordelon
Sandra Mahood, BA Ed
Eduardo Bruera, MD
Laurence J. O’Connell, PhD, STD
Carlos Centeno, MD, PhD
Christina M. Puchalski, MD
Brenda Corace
Margaret Ratcliff, MSW
Henry T. Dom, PhD (Hari-dhama)
Anna L. Romer, EdD
Claude Fusco Karmann
Cynda Hylton Rushton DNSc, RN, FAAN
Ann Goldman, MB, FRCP Karen S. Heller, PhD Irene J. Higginson, BMed Sci, BMBS, FFPHM, PhD
Colonel Sam Smith Mildred Z. Solomon, EdD Emily Tibbetts
Bruce Jennings
Tanya Tillman, RN
Mary Kraft, MD, MPA
Franco Toscani, MID
Marcia Levetown, MD
Charles von Gunten, MD, PhD, FACP
Justin Lo Neil MacDonald, CM, MD
James West
ix
Innovations in End-of-Life Care FVFlr\;'(l.edc.org/lastacts Mildred Z. Solomon, EdD
Editor
Anna L. Romer, EdD
Associate Editor-in-Chi~ Karen S. Heller, PhD
David E. Weissman, MD
Editor Associate Editor Associate Samantha Libby Sodickson
Staff Editor *+a
E ~ i t o ~ i aBoard Z SusanBlock, D.MD
States
Linda Kristjanson, PhD
United Eduardo Bruera, MD
Neil MacDonald, MD
United States~South America Canada Ira Byock, MD
Juan Nufiez Olarte,
United States
Spain
Thomas Delbanco, MD Laurence O'Connell,
~ n i t e dStates Alan Fleischman,
MD, PhD PhD
~ n i t e dStates MD
States United
Carla Ripamonti, MD
Ita1y
BettyFerrell, RN, PhD,FAAN
Robert Ubell
nited States United Irene J. Higginson, PhD
United ~ i n g d o m Stein Kaasa, MD,
Norway
PhD
Michael Zenz, MD
Germany Zbigniew Zylicz, MD,
PhD
The Netherlands
A Last Acts Initiative Supported by The Robert Wood Johnson Foundation
X
There is a substantial gapbetween the rhetoric of support for palliative care and the reality of palliative care program development and practice. Few, if any, decision makers are actually “against” palliative care, for who could ethically favor allowing sufferingwhen suffering can be readily combatted? Nevertheless, reality is reflected in the paucity of teaching in our professional schools, the lack of research support for particularly promising areas of research, such as studies on weight loss and debility, andthe fragmentary development of palliative care programs across the globe. We do, however, live in interesting and promising times.A few examples: e
e
e
e
The careof people with advanced illness has attractedthe interest of major private funding sources in the ‘United States, among them The Soros Foundation and The Robert Wood Johnson Foundation. The World Health Organization is revitalizing its Cancer Program which we hope will remain a “Cancer and Palliative Care Program,” carryi novative work of Jan Stjernsward. The logical argument that palliative care is not only the entitlement of the dying, but also clearly appliesto all people with chronic illness isnow ceptance. The consequences of this change in thinking will substantially affect palliative care development. Governments, government agencies, professional societies, and public organizations doexpress support for palliative care; we presume that thissupport will be tangibly realized if we can present them with examples of innovative programs.
o ~ ~ ~ Thus, the importance of the monograph series,Innovations in ~ n ~ -Care: Practical Strategies G International Perspectives. In both volumes to date, the editors have published accounts of successful, imaginative palliative care initiatives, complementedby interviews with leaders in our field. In the main, hospice and palliative care development has emerged from a British model, although variationson the theme, such as the early development of Canadian palliative care within supportive medical schools, are common. Reflecting both the unique health care system the in ‘United States andthe creativity of American colleagues, one would not expect that American palliative care would simply mimic programs elsewhere. A number of the articles in Volume 2 touch on xi
xii
FOREWORD
this point. The concept of prison as home and fellow prisoners as family (“Hospice in Prison”) is novelto this reader. The series of articles on this theme is touching and illustrates the remarkable adaptability of people to the devastating circumstances in which they fmd themselves. Similarly, the matching of youthful exuberance and social concern with palliative care patients, as illustrated by the articles on the hospice teen volunteer programs, is worthy of note. Patients are excellent teachers, not only for professionals, but for all. The promising young women and men engaged inthese programs are receiving a lesson for life, while enriching the days of the patients and families with whom they work. In various countries palliative care programs reflect local culture, but, regardless of the nation, one point is clear-only when local leaders with credibility and drive theby interview are in place does palliative care thrive. This point is well illustrated in Spain. Spain is blessed by the presence with Dr. Carlos Centeno on palliative care of an extraordinary constellation of palliative care physicians with drive and organizational abilities.As a result,we look with admiration to what has developed in Catalonia and to developments in other parts of Spain. The Spanish example reminds us that programs gain support when accomplishment is demonstrated. At the clinical level, the failure to recognize suffering is uniformly identified as a drawback to relief of suffering. We are compassionate people, but in a busy medical setting, using standard diagnostic approaches, we may fail to recognize the levels of distress of our patients and families. Drs. Mildred 2.Solomon and Irene Higginson point out the importance of assessment at both the organizational and patient level in the section entitled “Measuring Quality in Palliative Care,” which also includes an interview with Dr. Franc0 Toscani, showing how one of Dr. Higginson’s a program in Cremona, Italy. assessment measures is successfully applied in Assessment tools are keys to establishing a close relationship with patients and families, as they oftenopen up linesof inquiry, which may otherwise be ignored in a less structured physician/patient meeting.theIninterview with Dr. Christina Puchalski, she alerts usto both the importance and the ease of opening a channel for discussing spirituality with a patient. She points out that patients may not spontaneous talk about their spiritual beliefs, but these beliefs will havea substantial impact on how they view their illness, their moods, preparation forthe end of their life, and their decisions on therapy. Dr. Puchalski, quoting physicians with whom she has worked, states, “Theysay that the natureof the patient-doctor relationship changes as soon as they bringup these questions . . . the relationship feels less superficial.”’ both the physician andthe Opening a dialogue on spirituality may be difEcult for patient;thus the importance of hersimpleassessmentapproach-“FICA”,an acronym for Faith, Importance, Community, and Address.A series of simple questions is representedby each of these headings.I commend them to your attention. Pediatric palliative care has recently emerged as a unique entity. The tenets of adult palliative care have been examined and applied by our pediatric colleagues, who point out that in palliative care, as in other endeavors, children are not just “little adults”.Much remains to be learned aboutthe application of drug therapies in infant and child populations, while the emotional and psychosocial aspectsof a child’s illness, and the impact upon the family, often present as a special and profound form of suffering.
FOREWORD xiii
While in one sense palliative care for children is a latecomer to the field, in many others, the work of our colleagues is advancing beyond the illogical boundaries that sometimes encompass adult palliative care today. For example, Dr. Ann Goldman points outthat, ideally, pediatric palliative care is closely integrated with other aspects of care throughout the full trajectory of a child’s illness. Only recently has this concept taken root in adult programs. Moreover, with the exception ofAIDS and a few uncommon neurodegenerative disorders, adult palliative care has primarily addressed the problems of cancer patients intheir last days of life. In contrast, as quoted by the working party of the British Royal College of Paediatrics andthe Association forthe Care of Children with Life-Threatening Diseases and Their Families (quoted by Dr. Goldman), of the four groupsof children who may be expected to require palliative care, only one of them involves children with cancer. Mostof the work of a pediatric palliative care group is concerned with children with other chronic disorders, someof which may keep the palliative care team involved with the child and family over many years. At the other end of the spectrum, a number of pediatric palliative care leaders (e.g., Dr. Marcia Levetown and Dr. Stephen Liben) came to appreciate and practice palliative care initially through their experience working in Intensive Care Units. I sense that the palliative issues which arise in such units are better handled in many pediatric hospitals than in their adult counterparts. Mindless bureaucracies and regulations trump initiative and common sense in many parts of the world. Dr. Levetown points out that current regulations governingthe funding of palliative care in the United States sharply limit innovation within this highly developed nation. How much worse isthe situation in developing countries, where unfair and unreasonable pharmaceutical practices and regulations on access to necessary means of alleviating sufTering havea devastating effect on palliative care? I look forwardto future volumesof Innovations in End of Life Cure, and hope that in the not-too-distant future we may welcome a volume which contains an account of palliative care in developing countries, together with the stories of a number of the heroic and innovative individualswho have created palliative care models under difficult circumstances. Neil MacDonald, CM, MD,FRCP(C), FRCP(Edin) Director, Cancer Ethics Programme Centre for Bioethics, Clinical Research ~ n s t i ~of~Mon~real te Professor of Oncology McGil l University December 2000
1. Puchalski C . Taking a spiritual history allows clinicians to understand patients more fully: An interview with Christina Puchalski, by M Rorner. In: Innovations in End-ofLife Care: Practical StrategiesG International Perspectives, Volume 2. Solomon MZ, Rorner M , Heller KS, Weissman, DE., eds. Larchmont, N Y : Mary Ann Liebert, Inc., 2001, pp 205-217.
This Page Intentionally Left Blank
Acknowlledgments Innovations in End-ofLife Care, the online journal and international forum, has now been active since January1999 and continuesto publish bimonthly thematic the colissues at (wmv.edc.org/lastacts/). The journal came into being through laborative visionof Victoria Weisfeld, senior communications officer at The Robert Z. Wood JohnsonFoundation (RWJF)in Princeton, NewJersey,andMildred Solomon, EdD, editor-in-chief of the journal and directorof the Center for Applied Ethics and Professional Practice at Education Development Center, Inc. (EDC), based in Newton, Massachusetts. Vicki Weisfeld and the foundation, through its Last Acts initiative, have encouragedthe efforts of more than 450 partner organizations to work together to improve the care of dying persons and their families. As part of this effort, in1996 Vicki invited Millie Solomon and Thomas Delbanco, MD, director of internal medicine at The Beth Israel Deaconess Medical Center in Boston, Massachusetts,to co-chair one of the Last Acts’ taskforces. The taskforce, which aimed to facilitate improvements within health care institutions, spawned several ideas. Amongthem wasthe journal, Innovations in End-ofLife Care. Now, as we produce this second compendium volume, containing material from six. issues of the online journal,we remain extremely grateful to Vicki. She hadthe foresight to see what Innovations might offer health care providers and institutions, encouraged us to use the Internet to promote rapid, international dissemination of new practices and policies, and has continued to offer wise counselas we work hard to maintain a topflight contributionto the field. Beginning in 2000, we developed a collaborative arrangement withJourna1 of Palliative Medicine o , edited by David E. Weissman, MD, to publish a standwhere some of the articles and interviews ing Innovations section in that journal, in this volume have also appeared. We are gratefultoJPMs Managing Editor, Lisa Pelzek-Braun for assuring the smooth processing of Innovations andJPM manuscripts and material. We wish to thank all the members of our editorial board fortheir ongoing guidance and participation in this venture, leading us toward innovative practices and serving as reviewers. Eduardo Bruera, MD, and Laurence O’Connell, PhD, STD, served as guest editors for issues included in this volume. We feature Dr. Irene Wigginson’s work in Part Five and thank her for generously sharing her new instrument, the Palliative Care Outcome Scale (POS) with our readers. Stein Kaasa, PhD, MD, president of the European Association for Palliative Care (EAPC) has
xvi
ACI
deepened our understanding of European efforts to improve the care of the dying. In his thoughtful foreword to this volume, NeilMacDonald, CM, MD, has given us a senseof how Innovations in End-of-life Care contributes to the overall sweep of palliative care as we enter the 21Stcentury. The expert consultation and willingnessto nurture this journal that our board members have shown is as noteworthy as it is rare. We are grateful to each one of them. In this volume, we feature the work of two of the American Hospital Association’s Circle of Life Award winners for 2000 as well as publishing short descriptions of all nine programs honoredby the award. Publication inInnovations was one way in which the awardees’ valuable work was disseminated. We are most grateful to Gail Lovinger, director, Association Governance, and assistant secretary of the American Hospital Association,for introducingus to these outstanding innovators. Samantha Libby Sodickson, staff and art editor, has been part of the core editorial team at Innovations for the past year, researching and coordinating many elements of the website and manuscript production with skill, ease, and a high dose of creativity. She managed the selection process for all art for this volume, which was solicited in part through an contest, art which she initiatedon the journal’s behalf. Sam also designed the cover of this series of compendia. Her professional and artistic touch have enhanced this book. Stacy Piszcz, management associate at the Center for Applied Ethics, oversees many details of the project, including managingthe database and troubleshooting the needs of our more than 5,000 registered users. We appreciate her careful attention to all the logistical details that keep this project running smoothly, Pamela Metz, of Interactive Web Design, is technical consultantto the journal. Pamela redesigned the website in 2000 to great effect, and continuesto keep the site current and user friendly. Pamela’scompetence and timeliness make her an invaluable member of the production team. We thank all of our colleagues atthe Center forApplied Ethics and Professional Practice at EDC. Judith Spross, RN, PhD, Ellen Clarke, RN, EdD, Alan Stockdale, PhD, Sue Herz, JD, MPH, Deborah Sellers, PhD and Erica Jablonski have provided advice and feedback. Special thanks to Debbie and Ericafor their assistance in designing and conducting a survey of our readers, which provided invaluable data about utilization of the online journal and the interests of our regular users. We wish to thank P e q n e O’Reilly who transcribed many of the telephone interviews we conducted with innovators. One interview in this volume was conducted in French, and we wish to thank Damien Botton for helping to prepare Anna Romer to conduct this interview, as well as afterwards transcribing it in French, and confirming the accuracy of specific terms in Anna’s translation. We are very grateful to the many people who have helped to bring Innouations, in both online andprint editions, to the attention of health care providers worldwide. In particular, we appreciate the help of the Last Acts partner organizations, which shared their mailing lists and aided us in our efforts to promote the first volume of this book, including Ira Byock, MD, who leads the RWJF national program, Promoting Excellence in End-of-LifeCare.Thankyou to Beth
ACKNOWLEDGMENTS xvii
Brainard, for bringing the online journalto the attention of new audiences through the Last Acts website and partner organi~ations,and to Heidi Blumhuber at the EAPC, for bringing Innovations to the attention of approximately 25,000 clinicians in Europe and other parts of the world through its federation of national and regional societies. We also appreciate Julia Zauner’s and Walter Krieg’s helpful suggestions about waysof drawing readers to the website. The journal has benefited greatly from the vision andsupport of other colleagues atEDC.TonyArtuso, director of publishing at EDC, has been a sage and supportive guide throughout the process of creating this journal in both electronic and print formats. Sarah Curi and Amy Segal have provided thoughtful legal assistance. Erik Peterson has assisted us in tracking use of our journal website.Dan Tobin, CherylVince- itm man and JanetWhitla have encouraged and fostered our efforts. We wish to thank our colleagues at Mary Ann Liebert, Inc., which publishes this series of Innovations compendia and Journal of Palliative Medicine. Special thanks to Vicki Cohn and Mary Ann Liebert, who first had the idea of publishing an annual volumeof material from the web, and to Larry Bernstein, SusanJensen, and Paula Masi for their fine work on the design, layout, production, and marketing of the book. The artwork published in the book has been culled from several sources. We wish to thank Eleanor Rubin, who made the striking woodcuts, and Phillipe Cheng, Maureen Woyt, Daniel Grogan, and Hilary Behnerfor their beautiful photographs. Finally, we wish to thank our contributors for their candor and generosity in sharing their experiences pioneering innovative approaches to end-of-life. Their work provides inspirationto colleagues worldwide.We very muchappreciate our contributors’ willingnessto mentor readers through the online forum, and to respond to their queries about how to adapt their innovations in other settings. Some contributors granted permission for their tools or standards to be reprinted in this volume. We are very pleased and honoredto present their work inInnovations in ~ n d - o ~ Care: L ~ e Practical Strategiesand International Perspectives, Volume 2,
Anna L. Romer, EdD Karen S. Heller, PhD Mildred Z. Solomon, EdD David E. Weissman, MD* Center for Applied Ethics and Professional Practice Education Development Center, Inc. Newton, Massachusetts *Palliative Medicine Program Department of Medicine Medical College of Wisconsin Milwaukee,Wisconsin
This Page Intentionally Left Blank
“L)ream of Recovery” 02001 Eleanor Rubin Woodcul)
This Page Intentionally Left Blank
KAREN S. HELLER, PhD, ANNA L.ROMER,EdD, DAVIDE. W E I S S W , MD,” and MILDRED Z. SOLOMON,EdD
Education Development Center, Inc. Newton, Massachusetts *Medical College of Wisconsin Milwaukee, Wisconsin In this second compendium volume of the online journal,Innovations in End-ofLife Care (www.edc.org/lastacts/), we feature the efforts of health care providers working to improve the care of dying persons and their loved ones in a rangeof settings in the United States, Spain, Italy, and the United Kingdom. Among the journals devoted to hospice and palliative care, Innovations occupies a special niche. It focuses primarilyon the social and political processes, administrative actions, and organizational steps necessary for initiating and maintaining improvements in careof the dying. One very practical aim isto share tools and strategies from the innovators whose work has something importantto teach us. A second goal is to focus attention on the processes of change, on barriers and on how to overcome them. The journal includes both new practices as well as practices which have been ongoing in one or more regions of the world, but are not yet widely known or adopted elsewhere. As we summarized our mission in last year’s compendium,Innovations seeks to uncover and promote best practices by “unpacking”the process of change so that health care providers everywhere can learn from and adapt these practices to improve care of the dying in their own settings. In this way, we seek to encourage the delivery of more humane, more effective and more comprehensive care, such that dying patients experience greater comfort and well-being as well as, whenever possible, higher physical firnctioning. The cover design for this series of compendia is inspired by a NASA photograph of a solar eclipse, as viewed by astronauts in space. This image reminded us of how technology is expanding our horizons both literally and conceptually, with respect to life and deathon this planet, as well as enabling usto explore the possibility of life elsewhere. The astronauts who have orbited Earth and explored space have commentedon how their journeys have expanded their vision, and at the same time increased their appreciation for the fragility, beauty, and unity of all life.’ Seeing our home planet from space summoned a spiritual and humane response in these explorers, a desire to preserve and protect life on Earth. Simito extend larly, in medicine,as a consequence of our increasing technical abilities the horizons of life, many in the health professions and in society at large have been challenged to reframe notions about life and death, and to reconsider how 3
best to address the issues and needs arising from our mortal condition.In so doing, we turn to the humanities, and to our underlying ethical values,as a way of harnessing wise and effective useof technology in medicine. Thus, muchof the innovative work beingdone to reduce suffering and enhance the quality of life of people with terminal conditions and their families isthe indomains of improving painandsymptommanagement,enhancingcommunication,bringing the humanity of both patients and health care professionals to the fore, and attending and questions of values. One important part of our mission is to foster cross-national and cross-cultural exchange. By including perspectives from clinicians working across the globe, or with m i n o r i ~populations within a given culturally diverse country, suchas the United States,we seek to provide insight intothe explicit and implicit values that inform ideas aboutwhat constitutes high quality care and good quality of life near the end of life. In addition, we hope to show how the varying ways inwhich care is delivered and fmanced influencewhat is possible in different settings.
NG FIE
Since we published the first compendium volume of Innovations in 2000, interest in improving careof the dying has continued to grow inthe United States and other parts of the world through myriad and diverse efforts, too numerousto detail here. A sampling of the many ongoing efforts that now exist to promote palliative care aroundthe world is evident inthe numerous websiteswith resources for end-of-life care (see AppendixC). Many of these efforts have been supported rivate foundations, including The Soros Foundation’s Project on Death in (RWJF), which launched this erica and The Robert Wood Johnson Foundation j o ~ ~ ras n ~part l of its extensiveLast Acts campaign followingthe S U ~ P study.3 ~ ~ T amples of efforts funded by RWJF include the Promoting Excellence in End-ofLife Care national pro office, which has funded 22 initiatives acrossthe United States; the Educationsicians on End-of-LifeCare(EPEC) curriculum,offered erican Medical Association (AMA) to physicians who wish to develop their skills and knowledge in this area; andthe Center to Advance Palliative Care at Mt. Sinai School of Medicine, founded and directed by Christine Cassel, MD, and Diane Meier, MD, which offers technical assistance to hospitals and health systems wishing to develop pdliative care services.
E One indication of the maturing of the field of end-of-life care was the inauguration in May, 2000, of the Circle of Life Award, sponsored by the American Hospital Association and supported by a grant from RWJF to honor institutional excellence in end-of-life care. Two of the themes presented in this volume derive from two of the three award-winning programs for the year 2000: the Louisiana State Penitentiary Hospice Program,which is highlighted in Part Twoof this vol-
INTRODUCTION 5
ume; and the work of The Hospice of the Florida Suncoast, in Part Three, Intergenerational Approaches to Hospice, which focuses on one aspect of that hosruce Jennings’ editorial, ‘“VolunteerismandHealingCommunity Characte~zeExcellence in End-of-Life Care,” following this essay offers an overview of this award and an analysis of the common threads that weave across the awardg programs. The third Circleof Life Award winner, Franciscan Health Sysst, was the focus of another issue of the online journal and will be inc~~mpendi~~m.~ g Toward an Integrated Model of Palliative Care,explores the ways of financing and organizing deliveryof end-of-life care in nd Spain in interviews with Charles von Gunten,MD, and Carspectively. In this same section, Dr. Eduardo Bruera offers a review of current challenges facing health care professionals and identifiesthree ints: the need for access for patient groups now underserved; a more seamegration of palliative care into the continuum of care; and developing an evidence base for clinical outcomes in palliativecare. other sign of our maturing field isthe growing attention to the need for assessment and standards. Part Five of this volume, Measuring Quality in Palliative Care, explores these issues. The innovations featured throughout this volume all rnanifest the idea that humane and high quality care of the dying requires that their skills and attention on ensuring the comfort of patients, to ible, in a holistic and comprehensive manner. Such attention includes all the key domains of palliative care-physical, emotional, social, exisual. These innovations also underscore the importance of tailoras the needs of the family, ing care to meet the individual patient’s needs, as well as defined by the patient and those closest to him or her. Thus, across the field, there has been an emphasis on developing ways to better assess patient needs as well as to audit the extent to which and how well patients’ needs are being met at given points in time. A necessary corollary of efforts to measure the impact of care on patients’ cornof life isthe development of principles, standards,or clinical benchfort and quality marks which may be used by clinicians working inthe field to measure quality of care and monitor their progress in improving care. Two examples-the End-ofLife Care S t a n ~ a r o ~f sPractice for Inmates in Correctional Settingsdeveloped E (Guiding Responsive Action for Corrections in End-of-life) project and the draft ~niversalPrinciples for Pediatric Palliative Care, developed by Ch~PPS(Ch~dren’sInternational Project on Palliative/Hospice Semices)-are published here in Appendix B, and in sections two and six, respectively. In Part Six, Pediatric Palliative Care, the work of Dr. Ann Goldman, a pediatric oncolo~stand palliative care specialist at Great Ormond Street Hospital in London, England, andthe ~ ~ I P initiative PS are examplesof specialists working across national, linguistic, and cultural boundariesto address common goals to improve the care of dying children and their families. Perhaps the most compelling consequence of reaching this new stage in the evolution of palliative care is that it allows for a broadening of purpose and scope. This ~ i d e l ~ i nofg scope is l e a d ~ gclinicians and the institLltions in which they
6
INTRODUCTION
work ta expand the areas of patient and family need for which they feel responsible. Paradoxically, this is bringing the medical encounter back to its roots. Part Seven, Spirituality in End-of-Life Care, testifies to the growing interest in spirituality asa topicof inquiry and assessment in palliative care. Dr. Christina M. Puchalski and Dr. Mary Kraft emphasize how attentiveness to spiritual questions promotes their ability to keep the person who is ill and dying at the center of their care. These efforts all challenge our assumptions aboutwhat it means to be humane. How do we understand our responsibilities towardthe frail and dying in our families, communities, and practices? How do we further the goals and mission of palliative care in the settings in which we work, whether a large, acute care institution, community hospice, long-term care facility, patient’s home, or a state penitentiary?How does the act of providing palliative care affect the lives not only of people near the end of life and their families, but also the caregivers and the communities inwhich this care occurs? Here, we think of not onlythe health care professionalswho are workingto improve palliative care in diverse settings around the world, but also of the numerous volunteers-the inmate volunteers, security personnel, and medical staff at Louisiana State Penitentiary; the teens who serve as volunteers, their parents and schoolmates involved in the Hospice Teen Volunteer program at The Hospice of the Florida Suncoast; the school teachers and others who volunteer in the Italian League Against Cancer in Milan, Italy. By bringing in these new voices and by focusing on domains which may have previously been marginalized in health care settings, such as spirituality, we hope to stimulate a broader visionof what palliative care might embrace, and provide some detailed illustrations of how we might arrive there.
1. Solomon MZ. “Introduction,”In: Innovations in EEd-of-Life Care: Practical Strategies G International Perspectives, Volume 1. MZ Solomon, AI. Romer, KS Heller, eds. Larchmont, N Y : Mary Ann Liebert, Inc., 2000, p. 3-9. 2. Kelley W .(ed.) for the Association of Space Explorers. Tbe Home Planet. Reading, MA: Addison-Wesley, 1991. 3. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). A controlled trial to improve care for seriously ill hospitalized patients. JAMA, 1995;274:1591-1597. 4. BuildingBridges for BetterContinuity of Care. Innovations in End-of-Life Care, 2000;2(5), <www.edc.org/lastacts/>
BRUCE JENNINGS
m e Hastings Center Garrison, New York The poet John Donne once said that the death of any individual affectsthe entire as a purely community. If the poet’s wisdom tells us that dying should not be seen personal, private matter,then surely the nature of the care dying persons receive is not merely privateeither. For the first time, in2000, the American Hospital Association honored nine outstanding programs to improve end-of-life carewith the Circle of Life Award. The top award went to three programs: Louisiana State Penitentiary Hospice in Angola, Louisiana; The Hospice of the Florida Suncoast in Pinellas County, Florida; and Franciscan Health System West’s Improving Care Through the End of Life in Gig Harbor, Washington. S i x other programs received honorable mention and commendation.* These programs are diverse their in approaches and accomplishments, but in reviewing them, two themes standout, especially for the three award winners. These themes are volunteerism andthe importance of the community in care of the dying. Each of the programs is distinguished by its commitment to volunteerism and community partnership in the caregiving process. Even more than that, each is committed to the difficult task of creating what we might call “healing community.” By “healing,”in the hospice context, I do not mean curingor extending the duration of life. Healing here means keeping a person whole or intact by sustaining the community of connection and commitmentthat surrounds the person. Healing means sustaining and supporting the integrity of the dying individual as a person and as a member of a meaningful community that supports liviyrg with, and in spite of, the dying process. In the Louisiana State Penitentiary in Angola, Louisiana, many who are themselves serving life sentences take part in a program of hospice caregiving for fellow inmates who are dying. Theexperience of providing care to-and being preson both the ent for-a dying person has a profound spiritual and emotional effect person being cared for and the caregivers themselves. Many of these volunteers have lived violent and troubled lives. Inmate volunteerism at Angola reminds us vividly of the power of healing communityto touch spirits andto reach out across *Two of the three award winners are spotlighted in Parts Two and Three of this volume, and full details of all nine programs can be found in Appendix A, pp. 237-248. 7
8
INTRODUCTION
the chasm of alienation, anger, suspicion, and despair, As it calls forth both volunteerism and healing community, hospicehat g o l a reminds us that it is not only bodies and persons that need care atthe end of life, but also relationships and institutions. The Hospice of the Florida Suncoast, locatedin the, Tampa Bay area and one of the leading hospice programsin the country, has seen its volunteer program grow from 30 people in 1976 to 2600 volunteers toddy. It has a special pro~ramfor teen volunteers and a program of organized support based in a coalition of22 loof Florida cal faith communities.A national leader in this regard, The Hospice the Suncoast has shown that the mission ofhospice encompasses not only health care, but also community building and change. It has built bridges as breathtaking as the magnificent span straddling Tampa Bay-bridgesbetween the civil society and the many faith communities in the area and bridges across the generations. The importance of the latter cannot be overstressed becauseit breaks down the barriers that so often isolate the young from the old and from the inevitable reality of dying and death. Hospice volunteerism among teens today can build tomorrow's citizenship and intergenerational civic respect that our aging society urgently needs to cultivate in the decades ahead. Finally, forthe Franciscan Health System West in Gig Harbor, pice volunteerism is linked explicitly to the vocation of a lay within the religious community of the church, as well as to an op~ortLlnityfor service in the secular community. This reminds us that witness (being present with) and service are integral parts of quality end-of-life care and thatthe support provided to the dying by family and professionals is in need of supplement and reinforcement by the broader healing community as a whole. Volunteerism and healing community in hospice are not new. Dating back to the 1970s, the hospice movement inthe United States was distinctive. It has never been simply a mode of health care delivery but has always been a social philosophy and a grass roots movement as well. Hospice does not merely do d ~ e r e n t things in end-of-life care; it aims to do things differently,with its own special spirit and vision. That spirit rndyhave matured and become somewhat more restrained in its enthusiasm in the last 2 has not disappeared. Indeed, it is not an exaggeration to say that volunteerism and a corn tation have always been the at center hospice mission and remain so today. has happened to candystripersor the Ladies Auxiliary in most hospitals? Gone the wayof the dodo bird. ut in hospice programs all acrossthe country, volunteer service and caregiving are alive and well. Every day, tens of thousands of hospice volunteers visit dying patients and their families to talk, read aloud, listento family stories and reminiscences, or just sit quietly to be there with someone who
VOLUNTEERISM AND HEALINGCOMMUNITY IN END-OF-LIFE CARE 9
needs not to be alone. Every day, professional hospice staff devotes considerable time and energy to maintaining the hospice’s volunteer program, to recruiting, training, scheduling, and providing advice. Volunteerism was thought impo~ant enough to the spirit of hospice that the early pioneers who crafted the Medicare hospice benefit in 1983 included a provision requiring it in order for a hospice agency to qual.@ for federal funds. The care of the dying is a communal, civic responsibility. No matter how sophisticated palliative medicine becomes, and no matter how much we rely on government funds for paid professional services, the question of the humane, giving quality of end-of-lifecare will remain. It is a~ d a m e n t atest l of the health of the civic and moral fabric of our communities. Volunteerism is its symbol and manifestation. If we lose the spirit of volunteerism, the traditional soulof hospice, we will break the loom upon which that fabric is woven.
This Page Intentionally Left Blank
“AngolaPrison, 1.998’ 01998 Phillip Cheng
This Page Intentionally Left Blank
Dying Inside the Walls MARGARET RATCLIFF, MSV
7;6e GRACE Project, Volunteers of America Alexandria, Virginia
Death is no stranger to prisons. Inmate suicides, homicides, and executions account for more than 300 deaths a year.’ Prison is also “home”to seriously ill inmates, expecting to face their final days in confinement. With longer sentences and limited use of medical parole and compassionate release, the number of terminally ill inmates isexpected to grow as the 85,000 federal and state inmates aged 50 and over “age in place.” Compounding this, whereas the number ofAIDS deaths has dropped in the last few years, the rate ofAIDS cases continues to be high.:’ More than 2500 inmates died ofAIDS and other natural causes in 1997,’ yet few prisoners actually die inside the walls of the prison. “Traditionally, there has been great discomfort and reluctance in allowing death to occur on-site for fear that the death would be equated with neglect. Often to avoid potential legal, ethit easier to send all dying paical, and medical complications, facilities have found tients out of the facility.”2As one correctional professional explained, “Inmates are expected to go to the hospital ‘in shackles’ to die, and not die behind bars.”3 Is there an alternative? Can quality end-of-life care be provided behind bars? The Circle of Life Award-winning Louisiana State Penitentiary Hospice and a growing number of other prison hospice and palliative care programs clearly demonstrate that it can be. This article reviewsthe history and context of prison hospice programs and shares findings and observations about promising practices, ongoing challenges, and unresolved dilemmas. In the mid-l980s, the number of inmate deaths, especially those resulting from HIV/NDS, rose dramatically.At the prodding of inmates, chaplains, and other correctional professionals, corrections administrators beganto respond. In. 1987, the U.S. Medical Center for Federal Prisoners, Springfkld, Missouri, opened a prison the California hospice program. A few months later, a hospice was established at Medical Facility at Vacaville. A decade later, 20 jurkdictions (both state and federal) reported formal hospice programs either in place or under development, and another 12 were consideringthe development of hospice programs.*At least three jails now have hospice programs. Providing quality end-of-lifecare in prisons is not a simple undertaking, A number of characteristics of America’s prisons combine to pose enormous challenges: 0
Prisons promote conformity to administrative rule ratber than allowing for individual choice. 13
14 HOSPICE IN PRISON
* Crowded conditions and the sheer scale of prison facilities diminish
opportunities to treat inmates as individuals andto involve families. Concerns about drug abuse restrain effortsto provide state-of-the-art pain management and symptom control. Concerns about liability and litigation create pressure to use aggressive treatment even when a patient does not elect it. Comunication and delivery of services are complicated by the need to involve correctional personnelwho must emphasize security and institutional efficiency. * Treatment plans are frustrated by crowding and inmate classification.
0
0
0
To increase understanding of current correctional end-of-life care practices and to develop guidance andsupport for future programs, The Robert Wood Johnson Foundation’sExcellencein End-of-LifeCareprogram funded the GuidingResponsive Action in Corrections at End-of-Life(GRACE) Project in late 1998. A collaborative effort of correctional and hospice organizations, ledby Volunteers of America, the project collected informationon formal end-of-life care programs in the Federal Bureau of Prisons and 14 state departments of corrections. A diverse range of practices came to light, as well as some consistent elements? Through a series of meetings and visitsto prisons, the GRACE Project identified what practitioners considerthe most challenging issues for prison end-of-life care programs. These include: Thechallengesinclude the attitude of health care and security personnel about the use and abuse ofnarcotics, prison formularies that severely limit available medications, possibility of theft and trafand assurance of effective dosages. visitation and involvement. The challenges include the identification and reunificationof families,the definition of other inmates as “family” and arrangements fortheir visitation, visitor accessto inmates who are unableto be transported to visitation areas (especially for children), and extended and offhours visitation. * Training. The challenges include orienting and training a diverse group that includes medical and nursing staff, security, and other administrative staff and volunteers; changing negative staff attitudes; adjLlstingstaff assignments; and conflicting demands for staff time. * Inmate isolation. The challenges include care for high security level inmates, transfer of inmates fromone facility to another to access the program, and lack of family or inmate family. * Volunteer involvement. The challenges include securing administrative approval and security staff support for involvement of inmates as volunteers, as well as community volunteer engagement. Attitude. The challenges include creating what Tanya Tillman refers to as a “‘neutral zone”” where anger, fear, and prejudice of inmates and staff can be set aside. 0
The projectalso compiled a profileof program components that constitute best practices. These practices are reflected in the Standards of Practice for Correc-
DYINGINSIDE THE WALLS 1 5
tional ~nd-of-L~e Programs, developed by the GRACE Project,’ and will be supported with resource materials. These practices include: Involvement of inmates as volunteers Increased visitation for families, including inmate family Interdisciplina~team (IDT), including physician, nurse, chaplain, and social worker, at a m ~ i m u m Comprehensive plans of care Advance care planning Training in pain and symptom mana~ement Bereavement services Adaptation of the environment and diet for comfort The group also observed that the most successful programs, likethe Louisiana State Penitentiary program, shared several characteristics. First, they had a tireless champion for the program. Second, they had administrative support at the highFiest level. Third, they had included security staff in planning and operations. nally, they had support from their community hospice organi~ation. Developing quality end-of-life programs in prisons across the country will require more than providing a cookbook of resources. Certain characteristics of the system and environment will shape what is possible. Key variables include the number of terminally ill inmates in a facility, the level of medical services available on-site, the use of contract medical services vendors, andthe geographic location of the facility. Providing quality end-of-life care in correctionalsettings also includesseveral dilemmas endemicto corrections settings:
e
cases in which family is located in the same communityas the prison, family involvementindecisionmaking,especially in the event that the inmate is unable to express his own wishes, is limited. Simplyput, seriously ill inmates are still prisoners first and patients with concerned families second. The dilemma that arises regularly is that patients are far removed from family. Inmates are housed according to custody levels and other factors. This issue is particularly acute for women, who comprise a small, burgeoning segment of the prison a population. For example, the Federal Medical Center-Carswell, which has well-developedandwell-respectedhospiceprogram,servesterminallyill women throughout the country. Careat e.”For those inmates for whom prison has become home through long periods of incarceration, especially those with close-knit inmate families, leaving the general population for special care isolates them. though a few states, like South Carolina, offer palliative care in all their prisons, most provide
16 HOSPICE IN PRISON
comprehensive medical care in selected sites. Even if the inmate is relocated to a special housing unit or infkmary atthe prison, he or she may be leaving home. The challenge is to develop palliative care at all prisons. A n ideal perhaps, but the Oregon Department of Corrections, a G CE Project demonstration site,is plement this approach. ctives. The requirement for advance directives, inclL~dingdo not resuscitate (DNR) orders, is common among prison hospice programs. It allows the patient to remain in the prison to complete his planof care rather than being removed, in shackles, to a hospital. This option may prevent unnecessary indignity and suffering, but the inherent power dispa~tybetween the inmate and the care team and administration also has the potential for imposed, rather than freely chosen, care options.s The Louisiana State Penitentiary Hospice Program demonstrates that quality endof-life care can occur inside the walls in what appears to be “an impossible environment for hospice care.779While celebrating this inspiring and innovative program, let us also question the laws and their imple~entationthat make it necessary. Indeed, does public safety necessitate the continued incarceration of men and women who are unable to walk, and perhaps even breathe, ~~nassisted?
1. Camp CG, Camp GM. Corrections Yearbook 1998. South Salem, IVY: Criminal Justice
Institute, Inc., 1998. 2. May JP. Improving the quality of end-of-lifehealth care within a managed care model. Presentation at First NationalConference on Death and Dying in Prisons and Jails,November 16, 1998, New York, W. 3. Notes from GRACE Project Charette, Washington, DC, March 1999, unpublishec~.
4.National Institute of Corrections. Hospice and Palliative Care in Prisons: Special Issues in Correctiopzs. Longmont, CO: NIC Information Center, 1998. 5. Ratcliff M, Cohen F. Hospice with GRACE: Reforming care for terminally ill inmates. Corrections Today February 2000;64-67. In6. Tilhdn T. Hospice in prison: The Louisiana State Penitentiary Hospice Program. In: novations in End-ofLife Care: Practical StrategiesG International Perspectives, Volume 2. Solomon MZ, Romer AL, Heller KS, Weissman DE, (eds). Larchmont, W: Mary Ann Liebert, Inc., 2001, pp. 17-33. 7.Standards of Practice for End-of-Life Care in Correctional Settings by the GRACE Project of Volunteers of America, A Robert WoodJohnson Foundation Excellence inEndof-Life CareInitiative. Alexandria,VA: Volunteers of America, 2000. Reprintedwith permission inJ PulZiative Med 2000;3(4): 383-389. 8. Dubler NN, Heyman B. End-of-life care ill prisons and jails. In: Puisis M, ed. Clinical Practice in Correctional Medicine. St. Louis: Mosby, 1998, pp. 355-364. 9. Craig EL, Craig RE. Prison hospice: An unlikely success. Am J Hospice Palli~tiveCare 1999;16:725-729.
Louisiana State Penitentiary Hospice ~ Angola, Louisiana
~
o
g
~
a
~
The Louisiana State Penitentiary Hospice Program isi nant e r d i s c i p l ~ ateam ~ program designed to provide palliative care to inmates housed at the state’s all-male, “thefarm,”the Louisiana m a ~ ~ security u m prisonat Angola, Louisiana. Known as State Penitentiary @SP) is located on 18,000 acres of prime agricultural land miles northwest of the state capitol in Baton Rouge and is surrounde~on three sides by the Mississippi River. Currently, 5108 men are incarcerated there. The majority of thesem Louisiana, a sentence of An estimated 85 percent In January 1998, a ho the needs of terminally of life. The hospice p are housed in a 40-be nary care team (IDPI’) includes members of professions tra~ition a hospice team in the chaplains, as well as novative featuresof
s their pa~icipationin the hos family. therefor^, many i n ~ a t e see a way to pre~arefor how they t h ~ ~ s e l vwill e s die or as a ~e~~
* ~ l a s s ~ ~ a tpersonnel ion are prison officials who work with security personnel to assi living areas, joba s s i ~ n ~ e ~ and t s ,custodystatus. These officialswork closely with a varietyof prisan boards, including job boards, custody boards, andhospice boards. 7
18
HOSPICE IN PRISON
those charged with maintaining security in prisons and those who are imprisoned has long been characterized by mutual suspicion and distrust. Prisoners’ distrust extends to medical personnel, who are not generally perceived as acting in incarcerated patients’ best interests but, rather, as another arm of the prison system controlling their bodies and persons. This attitude of “us”against “them,”built up over many years and historically rooted in the use of brutality as a primary tool of control in prison, is difficult to overcome. In an environment inwhich the primary function of the facility is at odds with personal choice, comfort, and family unity, the LSP Hospice Program offers inmates, medical care providers, and security personnel a rare opportunity to work together in a neutralzone, with a common goal of providing humane careto the dying. The medical staff, security staff, and inmate volunteers have united around a set of integrated goals: 0
0
0
0
To provide quality, compassionate end-of-life care to our patients and theirfamilies To redirect efforts at end of life to palliation of distressing symptoms rather than extension of life (at all costs) as indicated by vital signs To improve the institution’s previous practiceof withholding a patient’s right to make health care choices forhimself To recognize and acknowledge those relationships formed by the patient that he finds meaningfill and life affirming
THE LOUISIANA STATE PENITENTIARYHOSPICE PROGRAM
19
proper use of necessary force, there are standardsof care governing every aspect as predof prison life. These standards are based on general community guidelines icated by state and federal law. The average citizen also has a misconception about who and what a prisoner is. To redress this misconception, I might ask someone to envision a moral continuum of human beings, ranging at one end from everyone’s idea of a compassionate, spiritual family man who gives time and effortto improve his community, to, at the other end, their idea of the most despicable, violent person they have ever heard of or met. I might then ask, “Which typeof person would you most likely find in prison, and which type would you most likely find living in your neighborhood?”The answer might seem simple, but it is not. In my experience, one would be no more likelyto find that each and every inmate incarcerated today falls at the negative extreme of the human continuum thanto find each and every free person at the positive extreme. One would be likely to find a mixture of both in each environment. Moreover, the same factors that motivatethe average citizen to improve often motivate the incarcerated citizen to improve. Although an incarcerated person is deprived of many of the rights of a citizen, he is still a member of a community, albeit an altered community. In keeping with the community viewof the prison environment, for many years the LSP administration has sanctionedthe operation of such inmate organizations as Toastmasters, Alcoholics Anonymous, the AngolaCivics Project, and Human Relations clubs, as well as various religious organizations. These groups exist to meet the societal needs of the members of the inmate community and operate much like Rotary Clubs or Moose Lodges. A rarity in many correctional facilities, these inmate clubs should not in any way be confused with gangs or gang activity. They have a formal structure with by-laws, missions,andofficers,andmusthavea prison staff sponsor to operate. Through support for individual hospice patients and the hospice program as awhole, the clubs are helpingto ensure the acceptance of the program by the inmate population. In addition, this kind of prison Community participation is animportant mechanismto assist with the hospice patients’ social functioning and well-being. The LSP hospice provides an opportunity for men who live in the altered community of the prisonand who have worked to move themselves closer to the positive end of the moral continuum to show themselves in anew light as compassionate citizenswho give their time and effort to improve their community. The program uses the institution’s respect for prison culture and communityto maximize the positive effectsof personal change.
HOSPICE IN PRISON
ospice has had high-level administrativesupport from in, and the assistant warden fortreatment, R. Dwayne spice in the newspaper and in response to inco~unity-basedhospice staff, Carol Evans, a e, a registered nurse and hospice manager then rsity Hospital Community Hospice in New Ors and Ms. Lemoine to research the feasibility und research in-
the prison staff to set up is maintained under the existing stateients admitted to the hospice program, dicare, or private in40-bed medical dormary. The pro~ramis staffed by physicians, nurses, soains, who integratehospicecareamongtheir other edical staff person employed full-time
-~
al Needs of the Terminally Ill Patient in a Prison E ~ v i r o n m ~an ~ tool , adapted
THE LOUISIANA STATE PENITENTIARYHOSPICE PROGRAM 21
the hospice may receive self-referrals from inmates.As part of advance care planning with inmates who have received diagnosesof terminal illness,we encourage these inmates to explore the availability of hospice services. Nursing staff play an important advocacy role for our patients, who address this issue prior to formal referral. Although the LSP Hospice Program occasionally receives inmates from other prisons in Louisiana, we discourage other institutions from transferring dying patients to our institution unless that facility cannot provide the medications necessary for adequate symptom management. Largely because sending patients to our institution means taking them away from the social support systems they have formed over the years, we prefer to share resources and assist staff members of other institutions in determining ways they might alter their current operating procedures to provide better end-of-life care in their own facilities. Currently, one other Louisiana correctional facility has established a hospice program, two others are under active development, andother penal institutions are exploringthe issue.
Criteria for Admission to the LSP Hospice Program Prisoners who are in the terminal stages of a life-threatening diseaseor condition are eligible for hospice care. The criteria for admission to hospice care atthe penitentiary are listed in Figure 1. Among the criteria are that the patient must have a diagnosis of a terminal illness or other condition with a life expectancy measured in weeks or months, a prognosis of less than 6 months, and no further solely
I . Patient diagnosis of a terminal illness or other condition with life expectancy
measured in weeks or months 2. Prognosis of less than 6 months 3. No further solely curative treatment of the disease is feasible or the patient refuses treatment 4. There is reasonable expectation that the patient’s medical, nursing, and social needs can be met adequately by the hospice program 5. There is adequate and appropriate hospice staff available to provide the services required 6. The patient has received a thorough explanation of the following: .His diagnosis .His prognosis *The philosophy, goals, and services of the hospice program 7. The patient requests admission to the program 8. The patient is willing to sign a DNR directive as a condition of program participation 9. Patient is able to understand information given and to provide informed consent IO. Certification of terminal illness is signed by the attending physician
Figure 1. Criteria for Admission to Hospice Care
22
HOSPICE IN PRISON
curative treatmentof the disease is feasibleor the patient refuses such treatment. We admit a patient onlywhen we are confident thathe understands the hospice philosophy and that our focus is on comfort rather than cure and when the patient and staff are satisfied that our goals are congruent. The patient can have any person he wishes present for the admission process, including counsel if he so chooses. We then help him share his decisions with any family membershe wishes to involve. Because inmates at our facility are wardsof the state, family members or other health care proxies are not allowedto serve as surrogate decision makers for our patients. However, we encourage the patient’s family to participate with (rather than insteadof) the patient in the formation of the plan of care. Currently, it isthe practice of our institutionto have a patient sign a do not resuscitate (DNR) directive as a conditionof participation in hospice.We are aware that requiring a mandatory DNR order is subject to question by outside professionals, who may be concerned that this puts the patient at risk for coercion or limits his abilityto make other medical decisions. Our decision to require the DNR order is based on several factors, which are thoroughly explained to the patient prior to admission to the hospice program.Among these factors is that our prison does not have a hospital on-site, even though we have doctors and nurses available 24 hours a day.We do not have 24-hour laboratoryor x-ray capabilities, nor do we have cardiac monitoringon our nursing units.We cannot administer blood policy requires products. Unless the patient has signed aDNR order, instit~~tional that we transport any patient who is in serious or critical conditionto an outside facility for stabilization, even thoughthe nearest hospital is 20 miles away. Thus, if we were to admit a patient for hospice care without a NR order, as his condition deteriorated, we would have to transport him out of the environment in which we can ensure him the greatest psychosocial support. Because of custody requirements, atan outside hospital the patient may be cuffed to a bed during his last hours, and family members may not be allowed to visit him or to stay there with him until he dies. At our facility, admissionto the hospice program does not prohibit patients from receiving surgery or blood products if recommended by the specialists who are following their care. In addition, and in contrastto some traditional hospice programs, we do not prohibit chemotherapy or radiation therapy or both if the attending physician thinks that the treatment is in any way palliative. Even if the treatment is only emotionally palliative, insofar as it helps a patient feel in control of his disease, we support and advocate for his rightto receive it. Sometimes, an outside hospital physician will offer a patient a cure-oriented treatment (chemotherapy or radiation therapy) even if the success rate is minimal. We arehonest with the patient aboutthe likely outcome of pursuing a given treatment and helphim arrive at a decisionwith which he is comfortable.We try never to take away his hope. Few of our patients choose to receive radiation or chemotherapy, but in one case, a patient had an unexpected remission after receiving chemotherapy and was discharged from hospice care backthe into prison population. Radiation and intravenous chemotherapy are provided, usually onoutpatient an to basis, at a charity hospital in Baton Rouge. The patient is sent by ambulance
THE LOUISIANA STATE PENITENTIARYHOSPICE PROGRAM 23
the hospital for treatment and then returned to our facility. If the condition of a patient deteriorates whilehe is outside the prison for a follow-up or routine treatment at a medical facility,we have the option to request that he be sent back to LSP so that he might be surrounded by friends and family during his last hours.
P r o v i ~ i na~Safe Space for the Care of Hospice Patients in the Prison Living facilities atLSP consist of dorms and camps,which operate separately from one another in some ways, underd~ferentchains of command, but within a common administrative structure under the overall authority of Warden Cain and his administrative staff. The inmates are assigned to these dorms and camps based on security classifications and medical needs.m e n a patient is admitted to the hospice program, he is reassigned to live in the medical dormitory in the prison infirmary. The medical dormitory was established to respond to two main needs. First, there is currently nosafe mechanism to administer narcotic analgesics in individual living areas in the prison. Legal guidelines and safe practicesin a prison environment prohibit inmates from controlling or administering medications to one another. Second,when a patient becomes debilitated to the point thathe requires m ~ i m u massistance with activities of daily living, his safety is at risk in some areas of the penitentiary. Unlike a hospital unit designed for acute care, the medical dormitory is setup to meet patients’ recognized needs for socialization with other inmates and his outside Family. An. innovative aspectof the program is that rather than being moved automatically to separate visiting areas, patients may receive visitors at the medical dormitory. A patient is allowed to attend church and social functions in another area of the prison if his health permits.
The 34-member hospice volunteer staff consists entirelyof inmates. They participate without inducement of monetary reimbursement. As one volunteer put it, at I get from this, money can’t buy.” An extensive screening process has been established to provide members of the inmate populationwith an opportLlnity to participate, while choosing those persons who seem likely to have the most to offer another h u ~ a nbeing.$ Only those who meet certain criteria are asked to participate. Offenderswith recent drug convictions, serious disciplinary writeups while incarcerated,or previous convictions of sexual crimes against children and those who are housed in administrative segregation are prohibited from participating.
$See Tillman T. Establishing an Inmate Hospice Volunteer Group, in AppendixB, pp. 251-258, for details on criteria for volunteer selection and other elements to consider when designing a hospice program in a prison.
24
HOSPICE IN PRISON
We ask any inmate who wants to volunteer to commit to do so for at least one year. M e r a year’s service, he can withdraw in good standing and can cite his participation as a volunteer to the parole board. Hospice volunteers are providedwith 40 hours of initial training, based on the topics listed in Figure 2. The training is provided in five 8-hour days during one week. Because we believe it is important to maintain community standards as established in the free world, we ask hospice professionals from area hospices to participate, as well as prison staff, in giving instruction and sharing ideas and experiences. The 4-hour monthly volunteer meeting is a time to discuss program issues, solve problems, and provide instructionto the volunteers from both prison staff and outside guests, who provide continuing education through in-services. Areas of volunteer participation include assisting patients with activities of daily living, providing inmateswho are hearing impairedwith interpretation, and translating and interpreting for Spanish speakers. Volunteers also provide program support, such as clerical work, errands, photography, design of educational materials, andpeer education. Their most important role, however, is to be a companion and friend to the dying patient. Inmates in our facility believe and often express the idea, “If an inmate or a family member isn’t with you when you die in this prison, then you die alone.” This is often no reflection of the care a person has received but rather a cultural aspectof socialization within the prison walls. Not only do different racial, ethnic, and religious subcultures make up the inmate population, but the very fact that these men are incarcerated fromthe rest of the world brings about a subculture all its own. The common circumstance of incarceration is a stronger tie among these men the than divisive force of any prejudice that exists withinthe prison world. The inmate hospice volunteers at times become mediators, especially for the patients who have been imprisoned longest and are therefore the most steeped
Introduction to hospice Role of the volunteer Concepts of death and dying Communication skills Care and comfort measures Diseases and medical conditions Psychosocial and spiritual issues related to death and dying The concept of the hospice family Stress management Bereavement Infection control Safety Confidentiality Patient rights Role of the interdisciplinary team (IDT)
Figure 2. Topics for Inmate Volunteer Training
THE LOUISIANA STATE PENITENTIARYHOSPICE PROGRAM
in the prison culture.A patient will often reveal needs andth volunteer thathe would not revealto a free person c often brings this concern to the team, and as a result, the outcome for the patient is im-
time when y o u 7 ~never e bee w that I might have to die here.” hospice has madethe d
ther seemingly unlikelypartner in the impr staff, consistingof security and classifkati portant members of the hospice team becaus live. It can be t ~ t ~ l said l y that our progra strong team effort. Custody staff, in particul i roles in providing improved end-o€-life care extent, our program works because of secu m e n the hospice program began, it was of compromise inwhich security and health decision-making process to ensure th met. This process led to the development accomplish our joint goals andto maintain Security offkers can effect change quic the provision of services simplyby the way in which they inmates w i t h the institution. Prisons are quasi-milita~o is oftenslowandlaborious.Havingsec provement of end-of-~ecare stitution. illustrate7John, a oon for hospice s went to assess the pati
HOSPICE IN PRISON
26
be debilitated and fatigued, and although he could understand and communicate with us, he was simply too tiredto engage in any meaningful discussion of hospice philosophy andthe extensive questions and answers requiredthe inintake process. It was evident that John had taken a dramatic turnthe forworse inthe previous 12 hours, and we had little time to do anything meaningful forthe patient unless we could idente his immediate needs. We asked him if there were one thing-anything-we could do for him at that very moment. He told us he wanted to see his brother-in-law,who was also an inmate at our facility. All he could tellus waswhere this man lived in the prison and his inmate nickname, and then he fell asleep. I went back to my office with little to go on other than thatI was looking for an inmate called “Face Maker,”who lived in a neighboring dormitory. A security colonel making his rounds in the medical facility stopped in my office to say hello and asked me if there were anything I needed or anything he could do for the program. With no more to go on than the information I gave 30 minutes he had John’sbrother-in-law identified, located, pulled him, in less than off his job assignment, and transported to the patient’s bedside. Before he died, John was able to spend 3 hours with his brother-in-law, as he requested. Although every man in the prison population has an opportunity to be reviewed for approval to visit someone in the hospice program who asks for him, at best it still takes several days for the request to be processed. It was the teamwork with security staff and the willingness of a security officerto step outside his traditional roleto meet the need of a dying man that accomplishedJohn’s last wish.
EET~N
E
s
Developing and I ~ p ~ e ~ e na~Plan i n g of Care The hospice IDT develops the patient’s plan of care with input from the patient and his family. Oncethe patient identifies what is distressing to him, palliation is provided by prioritizing the needs for intervention. In this process, the medical staff take their cues from the patient, who is encouraged to express his wishes and, to the extent possible, to retain some control over the plan of care. On an ongoing basis,the patient’s wishes are reevaluated, andhe is encouraged to communicate any changes in his wishes to the staff. Formal symptom assessments are made twice a day by nursing staff and include physical,emotional,spiritual,psychological,andsocialfunctioning.Theteam meets weekly to reevaluate the plan of care and to alter it when necessary to improve management of symptoms or meet the patient’s other needs. Social workers areavailable on site 24 hours aday to work withthe patient and his family andto provide individualor group counseling. The social worker makes the initial contact with family members identified bythe patient and is often the person most successful in reuniting estranged families. In my role as the hospice case manager,I am responsible for coordinating the provision of services identified through the plan of care to the patient and family. It is my responsibility to interact with the hospice patients on a daily basis,
THE LOUISIANA STATE PENITENTIARYHOSPICE PROGRAM 27
assist the IDT to provide continuity of care, and coordinate services and information with team members, including, but not limited to, the attending physician and the inmate volunteers. It is often necessary to mediate problems that arise among medical staff, security staff, and inmate volunteers to maintain the integrated goals that underlie our program.
Treating Pain and Other Symptoms in the Prison Environment The hospice medical director filnctions as the attending physician for each hospice patient, with a primary focuson pain and symptom management. This physician helps to educate other team members, who may feel uncomfortable prescribing or administeri~glarge doses of narcotics for pain management. Within the prison culture, being able to deal well with physical pain is considered to be a mark of strength. For this reason, prisoners may not admitto feeling pain, and many times the nursing staff have to rely primarily on nonverbal signsto assess physical pain. This is at direct oddsthewith drugseeking behavior that many people (even those working in a prison) believe might occur among men who are perceived to have a higher incidence of drug abuse than the general free world population. The types of narcotic analgesics available inourfacilityvarylittlefrom what you would expect to be available in a hospital or through a community hospice program. The differences lie mainly the in mode of administration. Modes of administration that are more easily tampered with, such as analgesic patches and lollipops, are not used. Intravenous 0administration of narcotic analgesics is provided on rare occasions only by IV push. Our facility does not currently have patient-controlled analgesia (PCA) pumps or any typeof lockout IV pumps. Sustained-release of the risk for misnarcotic analgesic pain medicines are used frequently in spite use. It is impossible in any environment to prohibit misuse of medications. We recognize this and take reasonable precautions, but we have not withheld pain medicine from any patient because of security concerns or issues of long-term drug abuse. Medications specific forneuropathic, muscle, and bone pain are also readily available, as are medications forthe pharmaceutical ~ a n a g e ~ eof n tother physical and mental health symptoms.
Providing Social, Emotional, and Spiritual Support to Incarcerated Hospice Putients By necessity, prison inmates are separated from society and family members. This means that at times of crisis due to grave personal illness, when they need the
HOSPICE IN PRISON
port of others most, they are often isolated. The LSP hospice’s focuson pallin of symptoms, including emotional, social, and spiritual needs of dying patients, has led to efforts to reunite families that have beenout of touch for years, as well as to help patients maintain friendships with other inmates. As a consela prison hospice hasthe most liberal inmate visitation policy of . Because current parole and compassionate release laws in few terminally ill inmates will be released solely because they e program tries to bring home to them through providing , pictures, visits, and withinthe constraints of prison security, as ~ e - a ~ l r m i experiences. ng ht us that social needs seem to far outdistancethe other r patients and their families. The years of separation from the patient’s need for or hope that his free world family during his illness. Sometimes we are very successfulin helpIn any event, the issues surrounding years of family separation and estrangement only strengthen the importance of helping the patient to maintain his support systems withinthe institution and to honor them. Because inmates are wards of the state, the prison staff function as primary caregivers tothe hospice patients. A prisoner’s family and friends sometimes express frustration that they cannot take loved ones home near the end of their lives. To address their frustration, hospice staff strive to maintain contact with family members (as identified by the atient), communicate changes in the plan of care or the patient’s status to them, provide feedback that allows them to feel secure that their loved one is being well cared for, and incorporate the family into the caregiving process whenever possible if both the patient and family wish it. To this end, we allow families to be in contact with hospice staff members 24 hours a day. or to thecreation of the hospice program at Angola, medical staffwere ald to notify a family only inthe event that a death was expected. Visitation schedules were very limited, and the remote geographic location of the penitentiary sometimes deterred families from makingthe effort to visit. Now, staff members are encouraged to interact with the family and, if the patient wishes, see them as part of the unit of care from the time of the patient’s admission to hospice. As part of the hospice program, we partnered with a church organies free rides to family members who have no other way to n a patient is dying, familymembers, including children, are allowed to be with him around the clock. Theyfrequently share this vigil alongside inmatefriends and family and inmatevolunteers. This is facilitatedthrough ation and support of the prison security personnel, who must asresponsibility for protecting the family within a secure environ-
THE LOUISIANA STATE PENITENTIARYHOSPICE PROGRAM 29
The LSP hospice has a formal bereavement program that starts with a bereavement needs assessment early inthe hospice admission process in order to begin anticipating future needs. The bereavement program follows a hospice pati one year following his death and is tailored to the needs of famreavement support to family includes writing them cards and let, and making referrals to counselors outside this institution. Many of LSP’shospice patients have been buried the on prison grounds because the family does not havethe financial means to bury them. As a result of the hosin keeping with pice program, funeralsat the prison have improved and are more an individual’s faith and with free world community standards. Friends and family, including both inmates and free persons, are allowed to attend the funeral, a family member reand arrangements are made for gravesite visitation whenever quests it. Hospice volunteers assistwith the preparation of the unembalmed body for burial on prison grounds. The body is placedin a handmade satin-lined casket made by inmate craftsmen, who make each one with love and care. One of the casket makers reported in an terview, “I make them all the same, and I do a good job. I never know if the casket I’m working on will be mine.” Inmates participate as pallbearers. Each role is filled by a man who sees the process as part of his own closure. Their close proximity to death, even a good death, necessitates an expanded bereavement program to include the inmate volunteers. Plans are under development to have inmate chaplains help prison staff solid@ the support system for those inmate volunteers at greatest risk for burnout. Sometimes an outside family member will want little or no contact with prison staff after the patient’s death because the death itself is seen as closure to the period of incarceration. Continued contactwith prison personnelis sometimes seen as a continuation of that negative experience. In those instances, the family’s wishes are honored. A yearly memorial service is heldto celebrate the lives of hospice patientswho have died. The service is planned by the inmate volunteers and includes participation by the prison choir. Currently,by necessity, the memorial services are held in an area inaccessibleto outside family. However,when a hospice prison chapel, now under construction, is completed, we plan to invite outsidefamily to memorial services in the new chapel?
In Llndertaking the LSP Hospice Program, we encountered and, to a large extent, overcame several barriers, eachof which is addressed here.
*The LSP chapel was completed in November, 2000.
30
HOSPICE IN PRISON
A Belief ~~t C r i ~ i n a l Do s Not Deserve to Die with Dignity A major hurdle we encountered whenwe embarked on the creationof our hospice
program was the prejudice against an inmate’s right to health care congruent with c o ~ ~standards. t y Employees and citizens often believe that an inmate“doesn’t deserve to die comfortably and with dignity when his victim did not.” Overcoming an ongoing battle. We haveseen, however,an acceptance of hosthis hurdle remains pice careby staff who previously opposed it because they held this belief. Only education will help society conceptually separate the men from their crimes.
Concerns About Risks to Prison Security Another large hurdle was the misconception that providing hospice care would pose an unacceptable risk to the security of the institution. Over time, we have learned that the inclusion of security staff as members of the hospice IDT facilitates the safe provision of hospice care in the prison environment. The security of the institution remains only as goodas it was before program inception.
P r e ~ ~ ~Against i c e Use of Inmate Volunteers There was great resistanceto accepting the inmate volunteersas team members. This problem has been eased because the inmate volunteer coordinator [thisauthor] is on staff and servesas a liaison among the inmate volunteers,other health care providers, an the security staff. Althoughthe inmate volunteers are not yet accepted by everyone, the general consensus is that they are an asset andthe primary reason for our program’s success.
Ethical ~ o n ~ e r n s The provision of medical care to prison inmates brings with it a host of ethical and legal concerns. LSP does not currently have ethics consultants employed to JDT, mediate end-of-life issues. Ethical issues are mediated primarily the hospice by with input from palliative care professionals from other hospices in our state. Some hospiceprofessionalsworkingoutsidecorrectionalsettingsfearthat prison hospices will become dumping grounds for hard-to-treat patients, who would otherwise benefit from curative care but instead are relegated to “designated death units.”2To prevent this, our patients are seen by a specialist in the applicable area of practice prior to referral to hospice care. In addition, our practice of evaluating each patient individually regardingthe provision of chemothera chec~-and-balancesystem to ensure the best apy and radiation therapy provides outcome for the patients in our facility. The concept of patient autonomy is d ~ i c u l to t uphold in the prison setting. expected result of incarceration. For The loss of autonomy aisnatural fear and an example, one of the most dramatic and significant losses relativeto autonomy is that of free choice of one’s health care provider and medical facility.Safety and security practices do not allow inmates the ability to leave the institution to see the physicians of their choice, nor can they havetheir care provided ata specific facility other than those that contract for services with this prison.
THE LOUISIANA STATE PENITENTIARYHOSPICE PROGRAM
31
We encourage inmates to exercise their autonomy through advance care planning. Advance directives are explainedto patients both in writing and verbally by the attending physician. Maldng an advance directive atthe time of admission for hospice care allows the patient to spec@ those treatments or actions he wishes to have withheld. The nursing case manager and a social worker participate as patient advocates inthe process of advance care planningto ensure that the patient has a thorough understanding of the concept of advance directives and has made his wishes known to the medical staff. To ensure that the inmate’s rights areprotected and that his voice is heard,the LSP has an administrative remedy procedure, a formal three-step legal process, that i ~ a t e can s initiate themselves or have inmate counsel initiate on their behalf. It is simple, costs the inmate nothing, and is often a precursor to more traa specific grievanceprocedure for its ditional litigation. The hospice program has patients and their families to address any problems that may arise. Patient satisfaction surveys are also an important partof our evaluation of services and a tool roving patient care. ~
~ C o ~~ ~ ge ~ ~ e s ~
udget concerns were initia~yperceived to be a major barrier to setting up the ospice. We do not have a separate budget and were instructed to build a program by necessity without any funds.For instance, no special unit was built, and staff were not added. Care is providedto hospice patientsin existing areasby existing staff. Given the budgetary constraints,we had to be very creative in finding waysto providefor the needs of th ‘ce programandenlisted the support of ourin. Theinmateorganizationsdonatedarefrigeramatesand the outsidecom tor, special treats for the patients (such as pizza and ice cream) that they might not otherwise receive, books for our hospice library, and various personal care items. In addition, we informal d linkages with other medical facilities and community Rouge h and New Orleans, which provide preventive, acute, end-of-life d a care. Inmates also have access to specialty clinics, physicians staff and contract physicians from State University medical facilities. The University Hospital Commuin New Orleans providedthe LSP with both initial hospice program planning and staff and lunteer education. They continue to provide education, support, andnetworki ort~lnitiesto the prisonhospicestaff.Ourbase of now includesLouisianaHospiceOrganizationandmanyof itspartprograms. Their mentoring, which includes sharing of materials and onucation of our hospice staff, has been provided to us as a community service without any costto our institution. The Prison Hospice Project was established by two comm~nityhospice professionals to raisemoneyfor the LSP hospice der constmction at the prison. Project Lazams, a nonprofit resifacility in New Orleans, donates equipment they have in surplus. This practice has beenfollowednursinghomesandhospicesacrossLouisianaun-
32
HOSPICE IN PRISON
der the direction of Jamey Boudreaux, executive director of the Louisiana Hospice Organization.
Although it istrue that few guidelines govern prison hospice care, it hasbeen our experience that the best measureof success is through feedback fromthe patients and their families. A Quality Improvement Program was established within the penitentiary, which solicits feedback from patients, families, and the inmate population throughletters, verbal testimonials, videotaped reflections, and patient and family satisfaction surveys. We strive to provide care that meets community standards. Currently, we are preparing for licensure review by the Louisiana Department of Health and Hospitals. Although this is not required by the state for our institution and is usually sought simply as a means for obtaining Medicare reimbursement for hospice services, we are not eligible for those funds and seek licensure only as a means to ensure quality of care consistent with community standards. Licensure will not prohibit us from continuing our current practice of allowing treatments deemed appropriate by medical staff, including provision of chemotherapy or radiation therapy. When we began our program, we really did not envision the full scope of its impact. Our primaryconcern was to improve the lives of our dying inmates. However, we have seen that the experiences generated through the hospice program touch the other men who come in contact with it-the volunteers, the friends, the staff, and the inmate family. By respecting the dignity of the inmate, regardless of his crimes, and by offering humane care to both inmates and their families, the LSP Hospice Program has the ongoing support and participation of the inmate population and many of the security staff. One outcome of the hospice program is that now there is less distrust of the medical staff by inmates. This should result in fewer frivolous lawsuits againstthe institution. Hospice care touches the families who have lost their sons, fathers, and brothers behind the gates of this prison. This has made me avare that they are victims, too. I am rarely asked anymore why I do this work or what makes me think the men I care for deserve dignified, palliative care. I hope it is because people look at our program and understand, just one person at a time,that the care inmates receivewhilein our charge says much more about society than it does about the inmates. Ourinmatevolunteerscontinue to be our major source of strength and are our greatest hope for continued growth. They are the heart of the care we provide.
THE LOUISIANA STATE PENITENTIARYHOSPICE PROGRAM 33
ADVICE TO THOSE INTERESTED
IN STARTING A PRISON HOSPICE
Persons who wish to provide hospice care in prison settingsmay feel more confident in knowing that delivering quality care in prisons is possible and can be accomplished without added funds. Here are some thingsto keep in mind: Remember that your most valuable resources are people your and the ideas they coatribute. Get backing from the highest level of prison administration. Incorporate security staff into every aspect of the program. Network with your local hospice care providers. In many instances, they are not aware of your need for assistance. Our program would not exist without the interest and dedicationof community partners. * Be creative. What works for one institution may not work for another.
0
0
0 0
There are now many different models of prison hospice. Programs that meet the general guidelines of the National Hospice Organization and correctional organizations, such asthe American Correctional Association andthe National Commission on Correctional Health Care can be tailoredto meet the needs of different prison patient populations and different institutions.§ REFERENCES
$Contact the National Prison Hospice Association and Volunteersof America (the GRACE Project) to learn more about how different institutions have built successful prison hospice programs. See Appendix B for website addresses, pp. 269-270.
This Page Intentionally Left Blank
JAMESWEST
Louisiana State Penitentiary Angola, Louisiana On January 7, 1997, with tears streaming freely down my face, I stood over his cardboard casket being loweredinto a pauper’s vault in the unfrequented prison cemetery. I unclasped my fist while letting slide fromit a crucifix,a token of our friendship he had given to me. As I stood transfixed on this cross lyingupon his casket, vivid memories raced throughmy mind. Logan and I had been doing time together, housed in the same living area for several years.We slept in beds next to each other and over the years established a concrete friendship behind these razorwire fences. Through his stories told lateat night, I had lived on the bayou, encompassed in the Cajun culture; worked an oil rig in the Gulf of Mexico; set traps for, caught, and eaten crawfish. I sensed Logan’s Southern pride when he spoke of his kids, his family, their traditions. We watched each other’s backs, as they say in prison, until the day they diagnosed him with lung cancer. Logan, whose nickname was “Bones,”went through surgery in which they removed one of his lungs. Thereafter, he was reassigned to Room Number Six on the ward, Nursing Unit 11. Those assigned to the treatment areas backthen lived and died there, essentially alone. For one prisoner to visit another prisoner, it almost took an act of Congress. Security was strict. On those occasionswhen I could find a ranking security officer compassionate enough to allow meto visit, I would go see my friend. His face would light up when I entered the room. As our tradition was, we would sit and tell each other stories, laughing alongthe way. For at least a year, I would spend afew hours with him every coupleof weeks. With I know he each visit, his condition-but never his spirit-weakened. Little did was preparing to die. The day beforehe died, Bones askedthat I be there for him to the end. He said, “I told my family that I did not want to be buriedamonglots of strangers. I would prefer to beburied here where all my friends are.” I reassured him that I would be there until the end. Bones died alone in Room Number Six on January5, 1997. When word gotto me a few hours later inmy dormitory, I wept 35
HOSPICE IN PRISON
by the feeling thatI had failed myfriend. He died alone! o his grave, I asked Bones to forgive me for not being romised. Security had refused to allow me to visit that vigil with Number Six: I’m a hospice volunteer sitting of cancer when the correlation with Room NumberSix strikes back my emotions. Ernest .Davis’sfriendship had beo that of Bones. I befriended and livedwith him in the same , I vowed, would be different! Ernest and I were sitting on his pita1 bed, when he point rature lying on his bedside table claimed his voice, but I GO qost of what he communi in his e es told the story. with the doctor’s the thought of prison. To older prisoners, the treatment center was “ThePlace of NoReturn. I took his hand in mine and promisedI would him be with him from then on. I explained the hospice philosophy to Ernest, then invited im to accept hos ice care so that I could literally love him to death. I’ll never him if he knew how to spell hospice.He rolled his eyes at me, and se whisper he spelled, “H-0-S-P-I-C-E.” I smiled and said, “That’s corspell it a little differently; we spell it GO-V-E!” He nodded. Eventually, he accepted hospice, and we set upon a daily journey, hand in hand. rnest’s bedside, I look at his niece, asleep in a chair. She has spent e in this room with us both. For 20 years, she grew up visiting her n, Now because of our hospice visitation policy,she is allowed to s also. Holding Ernest’s hand, I close my eyes, t h i n ~ n gof what it , periodically visitingwith Bones, and what it is like today. Never a ain, due to our hospice program, will another man unnecessarily die alone in om Number Six. ”
COLONEL S A M SMITH
Louisiana State Penitentiary Angola, Louisiana The hospice program has allowedme an oppo~unityto view my job as a security officer froma completely new and different perspective. After20 years in corrections, I had seen men stoop to extremely low levels to bring discomfort, displeasure, and disgrace to others. However, I was taught and believed that “there is a little good inthe worst man.” Needlessto say, this belief has been tested over the years. TX%en the hospice program came along,I was in a position that allowed meto assist without interfering with the development of the program. I was asked if I could or would assistwith the movement of inmates attending training to become hospice volunteers. This seemed strange to me because inmates seldom give up their free time to volunteer to do anything. However, we conducted protection checks and removedother small obstacles to maintaining security while allowing inmates to go from their housing units to the training and later to work as volunteers in the prison hospice in the medical dormitory. This was accomplished by following the same security guidelines that we normally used, and it enabled the program to become a reality. Once the program was up and running, when the first patient died, we saw that Angola truly had a hospice program. In the aftermath of this experience, we understood that a once terrible prisoner had been transformed into a lonely, needy patient. Nurses and volunteers cried. Everyone had done his or her job. Doctors and nurses had providedthe medical care they were trained to give. Inmate hospice volunteershadprovidedlove,comfort, and companionship to one of their own. I’ve observed a man rubbing a patient’s p a i ~arm, l shoulder,or leg. 1% observed dying patients hold their assigned volunteers’ hands as they slip off to a faraway land. Allof thishasallowedinmates to 37
HOSPICE IN PRISON
shown before. People bonding together for n our society. It is refreshing to h o w that ortunity for the different elements within rall success of the program. Standards and . Everyone has helped to police potential problems because to lose the hospice program.” rogram. It is truly for them. One of the alone in prison. This program tremenening. It guarantees that they will have an inmate the emotional strength to hysical size represents the stereotype d to control my disposition so that I the past couple of years, I’ve develetter person because I w a s involved r true identities. I’ve observed true recovered and walk aroun ms in the prison. I izations, clubs, and religious groups that offe tion. The hospice
In 1997, I wasaskedwhat I thouaboutsetting up prison here at Angola. I had hea said he had seen a story about to i needed a program like this and wanted to use inmate volunteers t At first, I had my doubts than 20 years experience, the first thing would take advantageof sick and weak mate volunteers moving around the nu enemies, I tho~~ght that it would just b Setting up the hospice took abouta year of planning, cedures, and researchby Carol Evans,a hospice socialw and staff atthis facility. Despitemy init I wanted to be involved in e v e ~ h i n g ing as a team with class~lcation,we s come hospice volunteers. We were looking for inmates who records andwho showed care andconcern about others rather t about themselves. In 1998, the hospice program took inmates would interact. I was surprise^ to see that the progr tive impact onthe inmates and also on security. It helpedthe the inmates as human beings and forced the security staff and medical staffto work together. In the first couple of days of the program, we established a schedule for both the volunteers and the inmatevisitors that outlined how many people could come to the medical unit where the hospice beds are located, at what times, and how long they could stay. Each hospice patient was assigned six volunteers and
40
HOSPICE IN PRISON
allowed ten inmate visitors a month. The inmates could visit for two hours at a time and could not come more than three days a week. Both the inmate visitor and the volunteer schedules are flexible, and nursing staff and the security supervisor work together to expand visitation as they see fit. It helps that the interdisciplinary care team (ID?? membersrespect the security personnel, see maintaining security as our first priority, and work together professionally. The hospice program atAngola has worked well and is still growing. Through team effort,the program seems to be getting more organizedas time goes by. Security officers have seen that the program does not violate prison rules and that from a disciplinary standpoint, the inmates are treated alike. Security, physicians, classification, chaplains, mental health staff, volunteers, and nursing staff working as a team made this program work and brought these people closer. This experience has shown us that using inmate volunteers is a must fora successful prison hospice.
Aginsky MI, Craven §A. Prison health care. S Afr M e d J 1996; Burrows R. Captive care: Changes prison in nursin 1995;9(22):29-31. Cerquone J. Special report: Hospice in prison. Hospice Colm F. The ethics ofend-of-life care for prison inmates. J Law 1999;27:252-259.
jails. J Law Med Btbics 1998;26:149-156.
42
PART TWO: SELECTED BIBLIOGRAPHY
Pagliaro LA, Pagliaro ANI. Sentenced to death?HIV infection and AIDS in prisonsCurrent and fbture concerns. Can J Criminol 1992;34:201-214. Schetky DH. Mourning in prison: Mission impossible? J Am Acad Psychiatry Law 1998;26(3):383-391. van Heerden J. Issues affecting the reform of prison health care in South Africa. S Afr Med J 1995;95(5):345-346. World Health Organization.Cancer Pain Relief and Palliative Care: Reportof a ~~0 Expert Committee. Technical Report 804. Geneva: World Health Organization, 1990.
ree
“Busy Boy Pccuses for Grandma’s Kiss” 02000 Maureen Hoyt, Hospice Volunteer The Hospice of Martin G SI. Lucie Residence Stuart. FL
This Page Intentionally Left Blank
ANNA L. ROMER,EdI)
Education Development Center, Inc. Newton, Massachusetts The age-old questions posed by Paul Gauguin in his 1897 masterpiece depicting Oh allons-nous?”(%%ere do the life cycle, “”D’ouvenons-nous? Que sommes-nous? we come from?What are we? %%ere are we going?), are particularly compelling the end of their lives. Adofor two groups of people: adolescents and those facing lescents aremoving out of childhood andinto the wider worldof adulthood with the key task of developing an identity. While family conti~lues tobe bportant, peers and the values of the larger society become equally salient as adolescents work to find their place in that society. For a person nearingthe end of life, at a time when the larger society has no commonly held answersto these questions, the questions themselves can regain personal urgency. Given these existential and developmental challenges, bringing individuals from these two groups together for companionship can offer an opportLlnity for growth and discovery on many levels. In this part, we are featuring The Hospice of the Florida Suncoast’s Hospice Teen Volunteer Program,which recruits teensto support the activities of the hospice in a varietyof ways, including matching teenswith patients near the end of life for companionship, practical help, and conducting life reviews. Sandra Mahood and other staff at The Hospice of the Florida Suncoast in Pinellas County, Florida, have collaborated with teachers and administrators at area high schools to create oppo~Llnitiesfor service-learning through the hospice’s programs. Ms. Mahood describes the genesis of that program, which now has 250 adolescent volunteers who serve in nursing homes and the hospice residencesor mentor children who have experienced a loss. They also do office work and participate in ~lnd-raisingevents. Ms. Mahood reflects onthe particular conditions that have led to this program’s growth, as well as what sustains it, and the elements that others need to consider when planning intergenerational hospice volunteer efforts. Such efforts areborn out of the pragmatic recognitionof the resilience and duraalliance as well as a sense that these two bility of the grandparent-~randch~d groups have untapped talents that could be mined fortheir mutual benefit. ”Developmental psychology offers a theoretical framework that can inform efforts to train adolescents to work with people at the end of their lives. If we as45
46
INTER~ENERATIONALAPPROACHES TO HOSPICE
sume, as recent developmental theory that ~ n t e r ~ e ~ e n ~among e n c epeople is the goal of healthy development rather thana caricature of independence that devalues relationships and any signof ~llnerability,there is room for recognizing how much people who are dying may haveto offer others. This framework expands the one-dbensional image of dying atients as those who are solely the recipients of care.
For adolescents, the process of developing an identity involves wrestling with these basic questions: Who am I? What do I value? With What work will I. choose? How will I make my life meanin vesting in? Where will my efforts be welcome? Duringthi trying on different identities, adopting, adapting or rejecting the larger society’s mores and values as they decidehow and where to locate themselves in this larger world. These developmental tasks were first detailed 50 years ago by Erik Erikson, who built on Freud’s psychosocial theoriesof development to introduce the notion of human development as moving through a series of crises-moments where danger and opportunity coexist.* Erikson posited eight progressive crisis points, each with different constructive and necessary tensionsto be negotiated in relationto family and society in order to move on to the next sta son’s focus on identity development as the key task ofadolescence ’s questionsregainimmeto the term “identity c r i ~ i s . Not ” ~ surprisingly,Gau diacy when one contemplates the end of life.Irackhasdescribed the importance of life closure and offering people nearing life’s end the opportunity to take stock, say goodbye, and find activities and rituals that allow for an affirmation that one’s life has had meaning.6 Erikson described this final stage as a tension between ego integrity and despair. For this final stage, Erikson named ren ~ n c ~ ~and t ~wisdom on as the strengths or virtues that emerge from a successful negotiation of this stage.* Harry Moody criticizes contemporary waysof framing aging, including developmental life span theory for a “failure to articulate a philosophical notionof meaning acrossthe life span.”’ e offers a densely argued philosophical rumination on the meaning of life and old age and suggests that one needs to recognize and connect three levels of meaning-in~ividual’ collective, and cosmic. Moody advocates for “a reappraisal of the role of activity and contemplation in the modern world” and suggests that attending to what “the aged can give us: a reminder,perhaps of the finality of life . . . could be a precious gift for those who can receive it.”’ Regardless of one’s stance on stage theory, itis tragic to be made marginal, not to be listened to, or to have one’s wisdom remain unspoken because there has been no context or conversation to elicit it. In a culture where many elders no longer live near their families and are not in daily contact with the younger generations, this need to maintain a meaning~llink to earlier generations becomes even more pressing. Retirement can be lethal in a work-obsessed society where how busy one is correlates to one’s status.
MUTUAL BENEFITSFORTEENVOLUNTEERS
AND PERSONS AT THEEND-OF-LIFE
47
Both elders and teens need to feel meaningful. Both needto make contributions to the community that the community then honors as valuable. Lyn Carol Gilligan’s research on girls’ development have established a link between the presence of voice and psychological resilience? This study and related research have confkmedthe centrality of relationship and connection to others for evelopment and psychologicalhealth.8y9 ~n philosopherSally G ~ ~ O W n to Natalie Rosel’s essay detailingthe life-world of a neighborhoo~of aging individuals, shenotes, “Frailty in aging becomes the occasion for ‘something commonandfundamental-hLlman connectedness and its consequences.’ The forms of connectedness are the shapes that meaning takes when the essence of lo Thus, another common bond for members an individual’s aging is relationsl~ip.’~ of these two groupsm the ~ p o ~ a n of c relationship e as amediumeaning and development . physical power and control over one’s wane, relationships with others gain even greater value. Sharing a sense of marginality to the mainstream of life, teens and elders share e~stentialconcerns but come to these questions of identity and meaning from opposite endsof the life cycle. In this way,the needs of people facing the end of their lives, regardless of age, are a clear match with adolescents’ needto be useful, taken seriously, and experimentwith new roles and responsibilities. A semis t ~ c t u r e dopportunity to meet and get to know each other in the context of a shared activity can bridge the differences in dress, vocabulary, lifestyle, values, and ways of making sense of the world, such that each can find solace in the other’s needs and strengths. In midlife, many find answersto life’s big questions in“work and love,”Freud’s famous words about what really counts in life. Most of us find a sense of meaning in the eyes of our loved ones, some in the work we engage in and its impact on the wider co~nm~nity. If oppo~unitiesfor work and love are limitedor made difficult through environmental, political,or economic distLlrbances, the fabric of commLlnity is stressed and can even unravel. For those who are gravely ill, work raison d’stre. ~ e a n i n must g be found elsewhere, no longer serves as an organizing eighte en in^ spiritual and relational concerns.If the larger society does not make space forteens, offer them constructive opportunities to contribute, that is, meaningful jobs and education, it is not unusual for teens to reject that society,at great y cost to the larger communi^. For all of these reasons, the larger c o ~ u n i t has a responsibility to join adolescents, listen to them and make space for them to contribute.
o n spart includeessays by three young people, who The ~ e r s o n a ~ ~ e ~ e cint ithis reflect on the impact of their volunteering experiences at The Florida Suncoast. All three agree that they arethe ones who have benefited most from the time they haw spent working with hospice patients. Emily Tibbetts de-
~ S
INTERGENERATIONAL APPROACHES TO HOSPICE
scribes how shevolunteering to fulfill a se~ice-learning reqLlirementin her highschool pro utthathercontact with patients then led her to appreciate her own lifeways.When her grandfatherdied,shewasable to bring ewfound understanding to bear on his final days. ctive on himself and seeing his own problems s text of condLlctin a life reviewwith a man who was dying. Listeningto this man’s telling of his life, ne marked by poverty and prejudice, Justin was struck by the man’s radiance and appreciation for life. This o p p o ~ L ~to n iconnect ~ in an authentic way, to listen and be moved by the story of another, develops empathy and the capacity to reflect on one’s own experience. Thesearenotfirmlyestablished capacities that we eith not have but, rather, ways o life that can be cultivated through experience. renda Corace beer in the wake of came a hospicevolu losing her two grandfathers and observing the constructive role of hospice in their er experience inclLlded making a difference in the lifeof a chronicallyill child, which led her to see herself in new ways as well as to evolve a sense of what career she might like to pursue. All three of these teens describe how doing things that matter inthe lives of others-at a time when they are actively engaged in figuringout just who they are and what matters-can allow a person to begin to find provisional answers to the question: o am I?
rspectives, we hearClaude FUSCOKarmann, who coorn for the ItalianLeagueAgainstCanr training program i te organization. In Italy, an exact replicationof the Hospice am would be impossible cause of a law that requires vol18 yearsold.However, . FuscoKarmann describes the context of volunteerism and volunteerrec~itmentand training inher setting and reflects on the role of young people in working with patients with life-threatening illness.
on, we describe a smaller and newer program at ge, Illinois. Marijo Letizia, PhD, of Loyola Univer-
MUTUAL BENEFITS FOR TEEN VOLUNTEERS AN@ PERSONS ATTHEEN@-OF-LIFE
and teen coordinators Kay Hammer a ahood as they designed this program. illustrate some of the c rk. In contrast to The ice has a small pro ra each teen personally, and a cohes those teens who have chosen t e fun and spontane nts and families who have been carefully er, well established, and so more i re structured. Patient-teen direct contac s u ~ e ~ i s settings, ed either nursing homes or the hospice residences. ,
What is essential to developing workable intergenerational hospice programs? Readers should note that these different structures indicate the need to tailor a program to the size and goalsof the particular hospice. At St. Thomas, teens visit patients and families in their homes, alone. This level of trust is poss bly because it is a small program characterized by close contact with someone who knows the teen and to whom the teen feels a commitmellt and senseof accountability. Ina larger program,where no one person can knowall the teen volunteers, teens may need to work in a morestructured setting in which adult staff members are on hand to help the teens navigate unexpected situations and find useful things to do. Regardless, teens will need to have adults they can callon as resources when necessary.
Listening When we approach people we are aiming to help with respect, curiosity and a willingness to learn from them, often they will teach us. It is important to structure the program as a two-way street. Each group has needs; if those needs are explicitly recognized and understood by program developers, the program itself will be more successful.It is also important to keep the person primary, whether it is the adolescent or the person facing the end of his or her life. Although hospice staff members are generally advocates of life review, not all persons who are dying will want to engage in life reviewor feel the need to perform activities that others would recognize as closure. Similarly, not all teens will want or be ready to have personal relationships with dying patients. Any system of catego~zation, including developmental theory,tends to object@ the persons studied.To counteract this tendency,it is essentialto honor the involved human beings-patients, teens, hospice personnel-as experts on their own experience. to make her home accessible may be what is most important to a particular pa-
50
INTERGENERATIONAL APPROACHES TO HOSPICE
tient at that moment in time. As the famous physician Francis Peabody wrote over 70 years ago, “The secretof the care of the patient is in caring forthe patient.”” Listen, andthe hospice patient will tell you what he or she needs and wants. The coordinators of the programs described here call on their imaginations to find a way to harness the strengths and energyof teens to help meet those needswhen it makes sense to do so.
Supporting Adolescents Many myths about adolescents persist.Ensuring buy-in of the middle generation, the parents of the teens as well asthe staff of the hospice or palliative care group, is also critical to the success of an intergenerational program. Moving from the dependence of childhood into an appreciation for the relationship between independence and responsibility is a process that evolves most easily when it is structured so that teens can succeed. Traditionally, teachers and psychologists have been interested in measuringthe actual developmental levelor what a child could do alone. Soviet psychologist Lev Vygotsky focused on the social nature of learning and describedthe zone of proximal development as the area a child can function at successfullywith some help. Performing tasks in the zone of proximal development with support and guidance,the young person can function at a more complex level and solve problems each cannot tackle in isolation.12 One of Vygotsky’s key contributions is legitimizing this scaffoldingof growth through dialogue and social relationships as an essential intermediarystep to mastery of a skill or new way of understanding. Teens need training and the opportunity to take on responsibility with just this kind of support. Many have not held paying jobs before, other than an odd babysitting or lawn-mowing job. Some may have worked at a fast food restaurant, butthe skill set required for interacting with dying patients is entirely different. For all of these reasons, a paid coordinator who has an understanding and appreciation for adolescents is essential to the success of an intergenerational programof this scope. Part of adolescence is a hungerto make a difference inthe life of someone else, to matter, to do something meaningful,to be affiliated with something larger than oneself and one’s family. When adults join adolescents in activities that the adolescents can see are meaningful-meet them where they live, so to speak-this engagement can be transformative. But this yearning means that it is incumbent on those adults who seek out and recruit teens to take those teenagers seriously and offer them meaningful waysto contribute. What is meaningful can vary from making soup or Valentine’s Day cards for patients to conducting life reviews or developing a personal relationship with a personwho is dying. Forthis reason, coordinators need to offer a range of activities that can meet both the abilities of the teens involved and the
MUTUAL BENEFITSFORTEENVOLUNTEERS
AND PERSONSATTHEEND-OF-LIFE
51
needs of the hospice patients, with appropriate amounts of adult mentoring and guidance. Whatever the task, evidence that these efforts have made a difference is an important source of data for participants and program leaders.
~ c c o u n t a b i l and i ~ Feedback: Ideas for Program Evaluation Basic issues of accountability and trust are atthe heart of any kind of home care for frailpeople, whether provided by a professional or a volunteer, and must not be ignored. Asking the patients themselves for feedback is not a simple question. No patient wants to be labeled “difficult,” and patients and families may be hesitant to report dissatisfaction except in egregious cases because of fears of alienating the hospice team or jeopardizing access to services. Continually thinking about evaluation-what it is one hopes to measure or learn about, as well as the most accurate and expeditious way to do so-is important. Asking people directly about their experience works well as long as the inquirer is alert to subtle cues, such as silence, that there may be a problem. The next challenge for these programs is to develop more careful documentation of the differences that leaders believe the programs are making. It will be valuable to be able to show more consistently what kindof impact workingwith people at the ends of their lives has on these teens. Ethnographic methods already exist to document changes in how participants understand an experience, but they are labor intensive.13 Some strategies could include entry interviews with teens, inqLl~ngabout what theyhope to get out of the experience and their reasons for volunteering. Programs could teach volunteers some expanded journal writing skills, in addition to the listening skills workshops they often provide. Writing fosters self-reflection as wellas documenting participants’ thoughts and feelings about interactions with patients. Coordinators can conduct exit interviews, which if recorded and analyzed might offerfurther evidence of the impact of this experience on the adolescent participants. Similarly, it is possible to document the effects of oral life histories onthe lives of hospice patients. Workingwith patients who have little time left is challenging, as the benefits and burdens of any research effort must be clear. However, much of this evidence is already available. It does take time to track and record what people are saying about the experience of producing a life review. Program designers would learn more from systematically inquiring about the process, being carefill to look for disconfiiming evidence as well. When do teen-patient matches work less well? What can be learned byexaminingfailed attemptsatconductinglifereviews or the teenhospice patient matches thatdid not take?
The exampleswe have chosento highlight vary in their size and scope. Both share a commitment to taking teens seriously and have implicitly built in some of what developmental psychologists assert promotes constructive identity formation-be-
INTER~EN~RATIONAL APPROACHESTOHOSPICE
than oneself, the opportunity to do some thin^ meanneed it, and so gain an outside perspective on one’s ut much can be learned from the simple act d in this work. We hope that these perspeef the theory and practice of c o ~ ~ ~ c t i n
MF, Clinchy BM, Goldb , Tarule JM. Women’s r a y s of ment of Self; Voice, an . New York: Basic Books, 1986. SelJ P r o ~ l ~and m Process in ~ u ~ Development. a n Cam-
iversity Press, 1982.
, Gilligan C, Meeting at the Crossroads: r o ~ e n ’ s
~s~ and c hGirls’ ~lo~ t. Cambridge, MA: Harvard University Press, 1992. . Erikson E. Childhood and Society. New York: Norton, 1940, 1985. . Erikson E. Identity: Youth and Crisis. New York: Norton, 1968. . Byock I. Beyond symptom management: Growth and development at the end of life, Eur J Palliative Care 1996;3(3):125-130. 7 . Moody HR. The meaning of life and old age,In: IVhat DoesIt Mean to Grow Old; Reflections from the ~umanities.Cole TR, Gadow s, eds. Durham, NC: Duke University Press, 1986, pp. 11-40. . Jack D. Silencing the SelJ Depression and Women. Cambridge, MA: Harvard University Press, 1991, 9. Jordan J, Kaplan A, Baker Miller J, Stiver I, Surrey J. Women’s Growth in Connect~on. New York: Guilford Press, 1991. 10. Rose1 N. Growin old together: Communality in a Sarasota neighborhood. In: W%at t i e TR, s . Gadow S, Mean to Grow Old: Reflections from the ~ ~ ~ a ~ i Cole rham, NC: Duke University Press, 1986, pp.199-233. 11. Peabody The care of the patient. JM [1927;88:877-88211984;252:813-818. 12. Vygotsky ]IS. Mind in Society: me Development of Higher Psychological Processes. In: Cole M, John-Steiner V, Scribner S, Souberman E, eds. Cambridge, MA: Harvard University Press, 1978, 13. Miles MB, Huberman M . Qualitative Data Analysis, 2nd ed. Thousand Oaks, CA: Sage,1994.
An Interview with SANDRA M O O D , BA Ed
The Hospice of the Florida Suncoast Pinellas County, Florida I n this section, we feature another Circle of LifeAward-winning program: The Hospice of the Florida Suncoast.* 1zje Hospice of the Florida Suncoast
is a large organization withan average daily census of 12.50patients. Currently, 2800 volunteers serve in a range of programs. Located in Pinellas County, Florida, where a quarter of the population is 6S years old or older, this hospice is unusual in the degree to which it has collaborated successfully with a wide variety of community institutions to integrate care of the dying into the life of the community. Here, we are highlighting their efforts to recruit high school students to support the activities of the hospice in a variety of ways. Hospice Volunteer Partnership Programs Coordinator Sandra Mahood, who directs the Hospice Teen Volunteer ( H m Program, describes the challenges of recruitingand retaining teens as well as the benefits to teens and patients when this partnership succeeds. Begun in 1.9.94, the Florida Suncoast HTV program is unique in its size and scope, with more than 250 adolescent volunteers. One of the secrets to these high numbers has been the successful collaboration with special programs in area high schools, which require service-learning in order to graduate. At those schools, students benefit from monthly, student-run hospice council meetings with inservices and opportunities to meet with other teens who are volunteering as a sanctioned after-school activity. All teen volunteers are linked to staff volunteer coordinators who run optional intergenerational monthly volunteer support meetings. Teens who do not attend high schools with existing programs depend on monthly phone calls with the volunteer coordinator astheir main means of support. m a tfollows are edited comments from an interview conducted by Anna L. Romer, EdD
‘A description of all of the Circle of Life Award recipients and a description of the full range of programing at The Hospiceof the Florida Suncoast can be found in Appendix A, pp. 237-248.
53
INTERGENERATIONAL APPROACHES TO HOSPICE
er: W a t inspired staff at the Hospice of the Florida Suncoast to recruit teenage uolunteers?
1994, we took advantage of a granto p p o ~ u n iFor ~ . the first ard of Pinellas County released some funds for inTheir goal was to encourage commLlni~members fferent generations to get to know and serve one anm had been just adults-mainly older adults, retired een served by hospice. We had not had adolescents directly, yet we believed that there was a place for young people to serve in hospice, so we applied for and received the funding. Our goal was to find a target group of high school students and train them to work with patients in a variety of ways. We identified one high school that was right next door to our main office. This high school also happened to be a magnet school with a focus on offering students oppo~L~nities to explore a variety of careers, whic seemed like a good match for a hospice, given that we always work in interdisciplinary teams (IDT). We approached the administration of the high school to partner with us on this first grant. That first year we recr~~ited about 20 students, whom we trained and who then volunteered with patients at Woodside, our 67"bed residential hospice. We saw that first group as a pilot. e wanted to see how bringing these two generations together would work. :In
ospice Teen Volunteer (HW program, we established an advisory com~itteeearly on in the planning process. The advisory committee included allthe key stakeholders: hospicepeople, school people, nursing home people, parents, and students. I invited staff from the schools where we have the rams, for example, the teacher who serves as the hospice sponalso invited administration fromthe schools, such as an assistant ent representative, andstudent representatives from selected high the nursing homes became involved, we invited the activities directors to serve on the advisory committee and it has been a way for them to keep us informed about what works well and less well with teen volunteers. I also included people from other programs within hospice. Thus, the director of the children's hospice and bereavement program, called the Child and Family Supram (CFSP). was invited as well as someone from our hospice residence. we wanted to hear from allthe people whom we needed to be involved in order for the program to be successful. We needed their involvement, their their evaluation and help in planning.
Tn designing the
THEHOSPICE OF THEFLORIDASUNCOASTTEENVOLUNTEERPROGRAM
5
at did you learn from the pilot?
:We learned about a number of practical barriers:the need for trans structure, and supervision. During the initial pilot, we actually transported students to and from the hospice as a partof their school curricLllum, and allthe students remained involved. Afterthe initial pilot, we lost some teen volu~teersbecause of the distance from their homes to Woodside. We added the nursing home component during the second year. students have a nursing home in their neighborhood, and our hospice serves many nursing home patients. Having the setting close to home so that students could ride a bike or walk eliminatedthe barrier of lack of transpo volunteering ina nursing home has beena very goodchoice, ecially for younger students. We have learned that the nursing home or hospice residence can be the best placement for younger students. These younger volunteers often need some real structure and support in their volunteer setting. Going into a n~lrsing natural match because they can visit with the hospice patientor they are assigned. In addition,other adults are there, namely, the activities director, who can guide the teen to some other constructive activityif the hos tient is asleep or indisposed at the time of the visit. Then it becomes a real winwin situation becauseour volunteers, who are trainedto go into the nursing home and support our program and our patients, can also of behelp and visitother residents in the nursing home. It givesthe teen volunteers someoneto consult with on site, as our volunteer coordinator can’t be present all in of the nursing homes. The patient also benefits from this st~lcture support dLlring the student7svisit. We have learned as we have gone along. did not start out with this current arrangement with the activities director, but sometimes a teen wouldgo into t nursing home, andthe patient would be sound asleep or just not feeling very we that day, and the visit would be very short. ere is a student who has traveled to the nursing home planning on spending an hour or two hours with his or her patientnow that student can go and serve someone else. So this collaboration has worked very well. We’ve also learned to allow students to volunteerinpairs.Teensaresocial,and sometimes they feel unsure of themselves, just &e adults do, but even moreso. Going into a new place can be daunting, but going with a friend can make a student feel Also, once more comfortable and confident. they’ve gotten started,if one student has a time conflict,the other one cango. At first, some staff were reluctant to send teens in pairs because of the concern that the teens would focus on eachother and fool around, but that has not beenthe case.
INTER~ENERATIONALAPPROACHES TO HOSPICE
56
: Now that you have an established program, how do you recruit strong teen volunteers? : Students come to us in several ways. They might pick up a brochure at their high school or at a community center and fill that out, or they or their parents might call the office to inquire about volunteering. They might hear about the program from friends and peers at schoolwho are already workingas hospice volunteers. Some teens are sent by juvenile court to perform a specific number of hours of community service. : I.What kind of
screening is involved?
do a telephone interview with the student using an intake form. We talk about their motivation and ability to participate. I ask the student someof the folWhy do you think you’d like lowing questions: How did you hear about hospice? to get involved? W%at are your goals for this? What experiences are you looking for? Have you lost a close family member or friend within the last year? Do your parents support your decision to do this?Do you have transportation available to get to the training and to your placement? I talk with interested young people about their choices for training and for placement after trainingthen and register them for a volunteer training class(Figure 3). We also ask any potential volunteer (teen or adult) who has lost an immediate family member or loved one within a year to visit with a hospice counselor to discuss this loss andwhere he or she is in the grief process. We understand that readiness is particular and noone time guideline works for all,so we altered our people earlier policy of waiting for a fullyearofmourningbeforeallowing :I
* Age: Our program is for high school
students, grades 9-12, approximately
ages 14-18 * Application/screening:Intakeinterview,application,references,code * *
* *
*
of ethics, co~ldentialitystatement, publicity release Parental consent TI3 test (needs parental consent) Hepatitis I3 test (not required but offered) Completion of training: 3-hour Hospice Volunteer Orientation Class required for officeor thrift store; 18-hour Patient and Family Support Training required for any volunteer who will have direct contact with patients or families Transportation: Teens must have own transportation to training classes and volunteer assignments F i g ~ r e3.
~ ~ i g i b ~ lCriteria ity for Teen Involvement
THEHOSPICE OF THEFLORIDASUNCOASTTEENVOLUNTEERPROGRAM
: TKbat kinds of
57
activities do juveniles sent by the court become involved in?
: We assign all persons adjudicated to community service by the court-not just teens-to the thrift store. Most of these people have had trafflc violations, a misdemeanor, or a minor kind of violation. They needto do a particular number of hours of community service within a very limited time period. They do not have the time to go through the necessary screening and training in order to work in the office or to visit patients. People sentto us via the court system do not handle money at the thrift store; they accept donations, put items out, and help load people’s cars. At the same tirne, however, we take the opportunity to say to the person, “ m e n you’re done with your service, we’d like to tell you more about hospice. Would you like to come to a volunteer orientation class?Or a training class? Would you liketo get involved?”We have had people who have stayed afterward and trained. : TKbat kind of
training do you do with teens?
SM: We offer two levels of training. The minimum is a 3-hour orientation,which would prepare the teens to be involved in support kinds of activities, such as working in our officeor thrift store. For students who wish to have direct patient and family contact, we require an 18-hour curriculum called Patient and Family Support Training. Topics covered in the longer curriculum include communicationskills, the IDT, personallossawareness,ethicsandpatientadvocacy, information about standard precautions, special populations, pain and symptom management, andthe volunteer’s rolein spiritualcare, psychosocial grief, andbereavement. Hospice nurses, social workers, volunteer coordinators, other andteam members participate inthe training. Volunteers complete a one-page written evaluation at the end of every training with two open-ended questions aboutthe key messages andhow to improve the training and a Likert scale checklist about the content and process of the training. In addition, once volunteers (both teens and adults) complete the training, a volunteer coordinator conducts a one-on-one interviewwith that new volunteer. The goal of the interview is twofold: (1) To assess the quality and effect of the training, that is, what did this person from the training? Is this person ready (2) To assess the new volunto havedirectcontact with patientsfamilies? s and skills so as to assist the coordinator in m
?
58
INTERGENERATIONALAPPROACHES T O HOSPICE
:I would say probably 75 percent are actively seeingpatients or families and so are involved in some kind of direct service. The remaining 25 percent are doing specialevents, office work, thrift store kinds of things. Some of the teens do both kinds of activities. They see patients but also work in an office, do a fashion show, or whatever. Of the 75 percent who are seeing patients and families, the majority are either in the nursing home or hospice residence. A smaller number are seeing patients and families in the home setting, most of the time to support children in those homes. We do not really have teens going into patients’ homes and providing respite for a patient while the caregiver goes out, as the adults often do, and we generally do not have teens running errands for families. We never have teens transporting patients and families. Because of auto liability restrictions, volunteers have to be 18 years old to transport patients. For a first visit,whether it is to see a patient ina nursing home or to visit with a child in hisor her home, the volunteer coordinatoror an experienced adultvolunteer accompanies the teen volunteer. In the case of a visit to a child, it would be the social worker who already knows the child. This adult helps set the tone and establish what is expected from the teen as well as codlrming the family’s needs and expectations forthe teen volunteer. In the home setting) a visit is mainly to see a child in that home, and most of the time, it is a well child whose mother, father, grandparent, or sibling is a patient. Sometimes, a teen volunteer will visit a child who is being seen by a counselor through our bereavement services because someone has died in his or her family. Inthese instances,when teen volunteers are paired with one of these children, the teen goes into help with homework,play on the computer, or just visit. The teen volunteer is spending time together with the child as a friend.We have had a very few instances, and they were really very carefully matched and selected, in which a teen has visited a pediatric patient. We have the largest number of students in the nursing home program because that is the area of greatest need. There are many older patients who are lonely and really love having a young person come in, The hospice patients are dying. The students assigned to a hospice patient might also drop in to visit other residents of the nursing home, however.
One pa~icularactivity inwhich teens have been integrated success~llyis in conducting life reviews with patients. Teens interview patients about their lives aqd record their memorieseither on video or in a photo journal (scrapbook) or written journal format. In fact, we are continuing to train for the video project bethe photo journals. For Sumcause we are gettinga lot of requests for that and for mer 2000 we are preparingtwo more training classes, and this time the teens are going to do the training. I’m going to be there just to watch and facilitate. The teen trainers will be teaching other teens about every step in the process: how to interview, use the video camera, and so on.
THEHOSPICEOFTHEFLORIDASUNCOASTTEENVOLUNTEERPROGRAM
59
:Do you ever have more requestsfor specific kinds of placements by teens than you can accommodate?
SM: The only area where we have more students who want to be involved than there are opportunities thus far has been in the children’s hospice and bereavement program because, thankfully, mostof our need for volunteersat hospice is for adults. For teens to be with kids is just a natural fit. They like that. They think it sounds likefin Many of the teens in trainingask to be with a child. WhatI say to them is, “That’s good information. I need to know that is really what you’re hoping to do, but I don’t want to promise you right away that you will have a into placement with a child. Would you be willingto go into a nursing home? Or a hospice house?” : What kind of time requirement do you make on teen volunteers once they’ve been trained?
SM: It’s not a stringent requirement. We really work with the students and their schedules. We do ask them to commit to going regularly, as inonce a week, to visit a patient.But depending on how the patient is doing and also the student’sschedule, one week the student might spend anhour, and the next week he or she might spendthree. That’s okay. We work around the students’ schedules and also how the patient is doing. : What kind of
documentation of patient contact do you expect of students?
:m
e n students make a visit, theyfill out a volunteerreport form, just as our adult volunteers do. That documentationthen goes into the patient’s chart. : Do
the teen volunteers do that on site?
: Usually they
do it at home and then mail it in. We give them the forms and return postage-paid envelopes.It is a challenge, just as it is with adult volunteers. Some students are great about documenting. Other students we have to call, remind, and follow up. By and large, they are fairly good about documenting.
S
of
SION
: What hospice staff members are involved in the support and supervision teen volunteers?
60
INTERGENERATIONAL APPROACHES TO HOSPICE
: I am the paid coordinator for the teen program. However, I’m not the only one who supervises the teens, as once we have recruited and trained them, they are placed on a team. Thus, the teens also have the support of that individual team’s volunteer coordinator. Because our hospice is so large (2800 adult andteen volunteers), we have 15 paid volunteer coordinators. :
at kinds of support and supervision do you provide teen volunteers?
: We start out with more support and more structure. All of the teen volunteers, just like any adult volunteers, are placed on a team,either a nursing home team, a hospice house team,or a home care team, depending onwhere they are volunteering. The team volunteer coordinator is alwaysthe first person the teen volunteer can turn to with questions or concerns. Initially, we place teen volunteers in a structured setting-either in our own hospice residences or a nursing home-so the teen volunteer is not alone with the patient. In the beginning, I don’t encourage teen volunteers to visit children in a patient’s private residence or home or to be involved in a life review project. Because we have a rangeof ways teenagers participate, not every teen receives the exact same levelof support. In a nutshell, all teen volunteers have a volunteer team coordinator, who coordinates the efforts of adult and teenage volunteers inorhis her area and offers a monthly support meeting. Realistically, not all teens attend these intergenerational meetings. The volunteer team coordinator will make a monthly check-in phone call to each teen as a minimum baseline level of support. Many teens receive much more support and, in fact, benefit from monthly inservice meetings organizedby the teens themselves at their high schoolsas an after-school activity.
SCHOOL 60
0
~
~
at was once called communi^ service” is now called “service-learning.” The n name is to reinforce the bilateral nature of this relaen a student comes to hospice, not only is thatstudent patients and families but also we are providi o l e ~ r nfro^ our patients and familiesand fr schools in Pinellas County eers because we have developed alliances with th hese schools. These are usually sc are two International ced s t ~ ~ e nwho ts a
0
THEHOSPICEOFTHEFLORIDASUNCOASTTEENVOLUNTEERPROGRAM
61
and graduate with college credit from that program. There are also two schools agnet Program for students who a health care careers, and they havea health curriculum. gram is geared for all kindsof health-related careers, e ians, dentists, and nurses to home health aides and p ties to explore varioushealth care career tracks. S programs are required to perf or^ 200 to 300 hours p r o g r a ~requirements beyond the academic require program requires more hours than th tion, all of the schools offer something calledthe Fl which. is an effort to encourage students to attend state Llniversities in Florida. scholarship, st~ldentsneed to do a 7 our service-learnsLlbstantia1service-learning reqLlirements were nathave partnered with those schools in the past on some grants to be able to provide opportunities for service. our program took off. That first grant on which we partnered it was called Florida Learn and Serve. There is also an America Learn and Serve grant.Thereare opportuni forhospices to ly for LearnandServegrants to re in the United In these high schoolswhere we have large numbersof teen able to offer more substantive support. For example, in Palm 00 stu~~ents serve as teen hospice volunt~ersfor coast. That’s our largest school ~rogrambecause t and the Medical chool meetings at Palm in South County, which house the other two group, and the stude ficers and a bo o serves as the sponsor for this hospice g nLlmbers of teen volunteers has a teacher
unteers. tFor more information about Learn and Serve, see Appendix €3,pp. 271-279.
62
INTERGENERATIONAL APPROACHES TO HOSPICE
ne very impo~antfactoristhat the highschoolshaveasense of ship aboutthisprogram. Eachof theseschools with asubstantialservice-leprogram is willing to make contributions in kind. For example, they give us meeting space for trainingandmeetings.Theyhelp to find a teacher to serve as a volunteer, and we register that teacher in our volunteer program because he or she isstaying er school to do So, the schools thiswithoutadditionalpay. come to the table with resources, and this contributionis essentialto the success of the program. :If you have a lone student out in another high school, do you invite him or her to these meetings so he or she can get the benefit of this cont~nuingeducation geared to teens?
: §tLldents from other schools are invited to come to Hospice Teen Council meetings atthe schools with big programs, but many times students from schools without special programs go to their own volunteer team coordinator’s support meetings. Over the last couple of years, we have added two more high schools to our Teen Council program. This growth has been initiated by individL~a1students, who have said, “You know, I’d really like to have a formal group here, and I think I could help to recruit more kids if we had meetings.”
: I invite the volunteer team coordinators who work with these teen volunteers to come to the meetings. For instance, we would invite the nursing home volunteer coordinatorwho supervises all the students who are placed in nursing would invite the home team volunteer coordinator because she is working with the students who are visiting children and families living in their own homes, as well as the students who are working in the office. In addition, we would havethe residence volunteer coordinator because she’s supervising the students who are involved in the hospice residence program. The programs are allday.We brief, 30 minutesatmost,because the studentsbeeninschool we haveagood turnout, have 100 students who areinvolvedinservice.n we average 40 to 50 students at the meeting, which I think is very good because the Hospice Teen Council occurs right after school, so we are competing with after-school sports, clubs, and other activities. We meet in a large room for the presentation where there is an opportunity for questions or discussion, and then we break into groups, usually by team. It’s a nice oppo~unityfor the volunteer coordinators to connect with the teen volunteers and allows for some direct feedback about their placements the at school meetings. From timeto time, if we have a big special eve coming up, I invite the special events coordinator to tell kids about it and get em to sign LIP to help.
THEHOSPICE OF THE FLORIDA SUNCOAST TEEN VOLUNTEER PROGRAM 63
s
ors hosts a monthly meeting to provide se arethe meetings to which everyteen t teen has access to the Hospice Teen or invites a member of the IDT, such as ting and to do a workshop or to ofe sure that we have evening can attend. Teens are invited, and time to time, but they are not parey do in the high school groups. One se individual teens from high schools nteers, which do not have Hospice inator becomes the linchpin of supnts who do not elect to come to . The volunteer team coordinator th her hand on the pulse of that paretween the teen volunteer and the r team coordinator is the person to so she knows if the teen is or her doc~~mentation, ntation is occurring. In the communicates with the acng. As I mentioned earlier, we enetween the volunteer coordinator ens. We ask each volunteer team and call each volunteer to ask, rns? Is there a n ~ h i n gthat you nd can include an informal invitation, “Stop We try to give that school or after
F
for our teen volunteers comes froman entirely sepaice of the Florida Suncoast, the CFSP. CFSP offers grief loy counselors whose job itis to work with spice membersof our co~munitywho have . In addition, every school in the county is ounselors in the event of a crisis to help on with a person who has suddenly died,
64
INTERGENERATIONAL APPROACHES TO HOSPICE
whether the cause is homicide, suicide, accidental death, or illness. Part of that counselor’s job is to be available to students in the Pinellas County schools. I want to be clear. These counselors are paid by hospice, and they don’twork at the school. They have simply been matched with the school so that school members know that if something happens at their school, they can pickup the phone and call hospice.In that event,the school will have accessto a hospice counselor, who will come and meet with the child or children in question. It’s a wonderful service to ow schools. The counselors have dividedup the county geographically, and each is responsible for a portionof schools, which might be a Combination of elementary, rniddle, and high schools. This system works well because these beschool in which reavement counselors can meet and offer supporta particular within there may be a number of students shar&g a c o m o n loss experience. We invite these counselorsto come to the Hospice Teen Council meetings and to be available to teen volunteers at their schools. These counselors extend their services to support the teen volunteers in the school. If I know tkdt close to Mr. Smith,a patient he has been visiting, Mr. andSmith has just died, I would receive that call from the team. Then, not only doI call and talk to Michael and his i & school and say, parents, but I call the counselor who is assigned to Michael’s h o n the patient and teen “Could you makea contact?”I give him the ~ o ~ a t i about volunteer and how long they’ve been together. Then, that social worker/counselor is available to that student-to talk over the phone, to meet at the school, to meet more than once if that’s needed. That has been a wonderful connection. :Not all teens know when they need support or seek it out when they need it, How do you provide what you think they need? :The counselors are very good at offering subtle support. They don’t approach these individual meetings as, “Come and pour your heart out to me.” It’s more like, “‘Have yougot a coupleof minutes after school? I’d like to just chat with you for a few minutes.”They make it as nonthreatening as possible. I also make sure that parents h o w that this service is available because a grief reaction may be delayed. Thestudent may be finenow, and ina month the parents may have some real concerns about what is going on. I want them to know that this service is there for their child.
I do not want to discourage other hospices that are small and wanting to start a we are fo~unate.We program. One of the things I want to be very clear about is, are a big hospice,we have the resources forme to be employed full-time, and we have all these other people. But if your hospice has a desireto involve youth in service, do that. Start small. Recruit a limited numberof kids. Train them. Then either someone who is already coordinating the adult program or perhaps an adult
THEHOSPICEOFTHEFLORIDASUNCOASTTEENVOLUNTEERPROGRAM
65
who really Ekes kids could volunteer to coordinate this program and get it started, Or thehospice staffcanwrite agrant, astheydidatSt.ospice, to fund a teen coordinator? The coordinator roleis crucial and probably works best when it is a designated, paid person. You can start small. Placethe teen volunteers inone setting where it is manageable for you. Be aware that hospice staff need to be prepared to explain the prograrn to parents, to reassure them about what their children will be doing, as well as to describe the kinds of training and support the hospice will oEer teen volunteers.I have created a short checklist ofkey points to consider when starting a teen hospice program that s ~ a r i ~some e s of the main points I am elaborating on in this interview.§
c :
s
F
at are the barriers or challenges to working with teens in hospice?
is a lot of bias against teenagers, even good teenagers. A big part of job is to be an advocate forthese young people. I don’t mean to sound in any way critical of adults, but the teens’ world is different. For example, just yesterday I stopped in one of our service centers, and a staff member expressed a concern about the clothing of a teen volunteer who was working there. The teen hadon a spaghetti straptop and a skirt. Well, that isthe fashion right now-that’s what the kids are wearing. The hospice staff member asked me what we tell the teens during training about their dress. I said, ‘‘I ask them to represent hospice well. Absolutely, if students dress in away that is offensive, or vulgar, I would want youto address that, andI would follow-up and address it. also have to be respectfit1 that their style may be different from ours.” As we more, it was clear that in this instance, it was just a matter o dress. We need to work with ourstaff to ensure that teens are : There
ne of the mist es I wanted to s teens. We bec nthused about this
with yourelatest
66
INTER~ENERATIONALAPPROACHES TO HOSPICE
the school wanted to partner with us and students wanted to do this, that we didn’t make sure that we had buy-in from our own staff and adult volunteers. We We neglected to canvass them and find outif they thought this was a good idea. assumed that they would be welcomingof these students once they came. That is something I would definitely recommendto any hospices getting ready to include teens.It is not enough that just a few people who are in chargeof writing the grant and coordinatingthe program are excited about it, You need to bring the rest of your staff on board as well. There is a whole piece of internal marketing of the program, which involves some staff training and volunteer training theatoutset abouthow teens are unique and how you can work with them best to help bring out the best in them and what our responsibility- is to them. Often, working with the hospice is these students’ first job experience. We are training them to be responsible and contributing members of their community. : What helped persuade other staff that recruiting teens made sense? : What worked best for us was to share success stories of what teens can contribute to hospice patients and families and what they can add to our program. We have written articles in our newsletter to get the word out. One of the most effective waysto show this success is to dedicate a whole staff meeting to the teens. We invited some teen volunteers to come and talk to our staff about their experiences with hospice patients. The teens spoke about how serving as a hospice volunteer had changed their way of thinking and their plans and what it had meant to them. When staff saw these kids and heard their stories, I saw their attitudes begin to change. It is almost as if you need to do a pilot program first-and have it work-before people really believe that it can work. The calls that I get from volunteer coordinators from other hospices inthe country all say the same thing: “Can kids really do this? Ih o w kids can work in the office and help as fund raisers, but can they really visit patients? Does that work? h e they mature enough? Will they follow through? Do they document?”These questions are all valid because people are concerned, and it’s a new idea. I tell people the teen program resembles the adult volunteer program.Not every teen who trains with us endsup being the top volunteer. There are some students who come, and they learn about hospice, volunteer for a little while,put in their service hours maybe, and then they’re done. There are somekids who come and decide it is not for them at all and do not beginto serve. Then, there are other kids who come, and it really has an impact; it becomes important in their life. One boy, for example, was a drum major for his high school band. I called him one Friday afternoon, and he said, “I’ve gotto run. I’m on my way to visit Carl [a pediatric patient he was visiting].And I’ve got to do that quickly because I’ve got a
THEHOSPICE OF THE FLORIDA SUNCOASTTEENVOLUNTEER
PROGRAM 67
football game tonight.” He wanted to be sure that he made that connection with that child before he went to do a high school activity on a Friday night. I hear storieslikethatall the time.This experience becomesimportant in a busy teenager’s life.
your18-hour train in^ where you have direct contact,do you makeexplicit what the expectations and criteria for good performance are? :In
: This is an area in whichwe are still working. We need to be clearer about our expectations in our program.We wish we had done more with outcome measures and pe~ormancestandards up front. At the moment, itis much more of an informal process. We ask the teens to remember that they are representing The Hospiceof the Florida Suncoastwhen they enter a site to be with a patient. We ask people on site to let us h o w how a volunteer is doing, and the volunteer coordinators tdk with each teen volunteer regularly. ask for feedback, when it is appropriate, from isthisgoing?Has the volmteer been helppatientsorfamilies.Forexample, ‘ ful in the visits? Is there something that we could be doing differently or better?” However, the pe~ormanceevaluation part of our program is quite~ o ~ a l . of patients and families,which include an We do conduct two different sz~rveys open-ended section for comments. We survey all our families approximately 6 weeks after the death of a patient about all aspects of hospice care. In addition, we send out a surveyto about 50 percent of our patients shortly after they enroll in hospice. We have read positive comments about the contributions of teen hospice volunteers on these surveys.
o you ever have a situation where you have a very enthusiastic teen, but you have concerns about this teen3 ability to work with patients? W a t would you do in this instance? :We do a coupleof different things. If we are really concerned about the student, we ask him or her to start out in our office or in our thrift store, with the idea that in 6 months, we’d like to talk about an opportunity to visit with a patient. If we have just a little bit of a doubt but think, ““This really might workthe student seems a little immature, butwe ought to give him or her the benefit of the doubt,” that’s exactly what we do. We place that student in a s t ~ ~ c t u r e d situation, r-rsually a nursing home, and make sure that the volunteer coordinator that supervises him or her knows about the concern that we have and keeps a close watch on that student.
at do you mean by “a close watch?” : The volunteer coordinator talks with the activities director who is on site or the coordinator in a hospice residence. She asks how the volunteer is doing. For example, “Is the volunteer arriving on time? Is his or her behavior appropriate? Describe his or her communications and interactionswith patients and staff.”We keep track of each student’s performance by asking those questions. The volun-
INTER~ENERATIONALAPPROACHES T O HOSPICE
inator also speaks with the teen volunteer overthe phone on a regular es the teen to attend regular support meetings, So we have to rely on the staff in our residences or the activities director or volunteer coordinator in the n ~ r s i nhome ~ setting. : Your numbers haveincrease^ from 25 to 250 since 19-94Are thereprobl e ~ assoc~ate~ s with having such large numbers of teen volunteers? :Yes. The program really began to grow in 1996, when we first partneredwith the school district on the Learn and Serve Grant. Forthe last couple of years, we have had 200 or more teen volunteers. The largerthe program grows, the more have to rely on individual volunteer coordinators to be intouch with the teens. ereas in the beginning, one person could know all the teen volunteers and keep up with each one, now I cannot h o w what all 250 students are doing. Our greatest challenge has been to get requests from teams for teens to be placed. As the program has grown, our supply of teen volunteers sometimes is greater than our demand for their service! This is why we’ve attempted to be innovative and to brainstorm all the ways we can enhance what we’re offering to * ts and families. What are some things that kids can do thatwe haven’t been ng about?Part ofthis challengemay stem fromconcerns that still exist among our ownstaff about teen volunteers, and partof it may be concerns from patients and families. This is a chaotic time, and families may have reservations aboutthe idea of a teenager coming into their lives at that point. Part of the challenge is that staff members are just really busy, and they have not asked themselves, “What need could a teen fill here?” A major part of my job is to bring the teen program, the teen volunteers, and the services they can offer to the attention of our teams through our volunteer coordinators. The volunteer coordinators listen at every interdisciplina~team meeting for ways teens couldcontribute to the care they are offering. In this way, we generate requests for teen volunteers. We assign a teen volunteer, based on his or her interest, to a particular team. However, the patient assignment comes from the team once the coordinator finds a good match.
n’t ~ a l k ae ~out o ~ t c o m emeasures, and I ~ ~ ~ e ~ s t a ut what w o u l ~you like to measure? er p r o g ~ ~ m you w omost ~ l lz~ e to ~ o c u m e n ~ ?
THEHOSPICE OF THEFLORIDASUNCOASTTEENVOLUNTEERPROGRAM
69
to any kind of closure? Did it help the patient resolve any conflicts? What was the impact of this experience?We would love to measure that somehow. We are equally interested in documentingthe impact of contact with dying patients onthe teens who volunteer. Do their attitudes aboutaging and about death and dying change as a result of the volunteer experience?Can we document skills s about acquired and career paths taken? Certainly, individual students have utold how hospice has influencedtheir attitudes and career choices. What isthe overall impact of this program on the teens?
I do haveone story that speaksto the question of the impact of the Lifetime Lega-
cies Project on our patients. We had a couple who had been married for more than 50 years, and the wife was a patient. Two of our teen volunteers met with them to do a video life review. The couple engaged equally inthe telling of their experiences as a couple, and when the video was done, it was beautiful. This patient responded to one of the patient concurrent surveys we send out, and I happen to have her comment: “Can’t say enough good things about this place. Thought the video team was great-wished they could have had the teens on camera.” We received a letter from a parent whose child had been mentored by one of our teen volunteers, Michael Tibbetts (the brother of Emily Tibbetts, who wrote one of the Personal Reflections§§ in this section). In this situation, the father was a hospice patient, and Michael and Emily worked first with the son but, in fact, helped the whole family during this difficult time. Her letter is a real testimonial to what teens can contribute (Figure 4).
I would say that 7’5 percent of these students continue to volunteer throughout high school. If they train as freshmen, they’rewith us for 4 years. If they train as
sophomores or juniors, they’re with u s until they graduate. : To
what do you attribute these teen Volunteers’ commitment?
: These teens feel that they’re doing something meaningful. They feel their work is important, yet volunteering is not a difficult thing to do. We do not have a specific time requirement. We offer a variety of choices, and they can change their tasks so they don’t get bored. They can do one kind of volunteer work for a while and then say, “Oh, gosh. I’ve heard about life review. I think I’d like to learn about the video project.” They can make changes within our program and grow and learn. Teen volunteers tell me how they have learned things about themselves, that they are good at things they did not know they
INTER~ENERATIONALAPPROACHES TO HOSPICE
n by the wve of a hospice pae F l o ~ ~ dSunco~st a about the impact of a teen uolpatient and our adopted son, George, drew’sillness. George is very does not express his feelings openly en I was offereda teen volunteer to help mentor George, oy, was I wrong! lunteer with our famel has been visiting George hael has a way of maki~g ream or play sports. Over the holiuse and made cookies and particie looks forward to his visits, is slowly building a rapport and a es everything from his school work accomplished for George are w o n d e r ~ land , they 1 helps me when I cannot figure lessons. He has done yard work er things around the house, which do not get done often so helps my husband by just sitone so many other things with
this is g o i ~ gto sound sort of weird the schools, it’s become popular, ecome accepted. It is somethin that their friends are doing. e have a lot of sibling volunteers. I am having so much fun watching younger brothers and sisters come in when theolder ones are getting ready to graduate. Some of the boys who volunteer come to us via a sister, but other times it is because their friends-who are often girls or girlfriendsare in hospice. They’re telling them, “Come to a meeting and find out what it’s about,” and they see that we do really cool and fun
THEHOSPICE OF THEFLORIDASUNCOASTTEENVOLUNTEERPROGRAM
things. It has really been a process of peer recr~~itment. Stu~e other students involved, that has made the program successf~~. :Do you
have any final comments?
:I have to say that one unanticipated benefitof hproved our adultvolunteerprogram.ateverwe’vele often applies to our adult volunteers as well. For exa us to make the t r a i ~ i nmore ~ interactive and fun. ated the same learner-centered a ~ ~ r o a cThe h . tee bring in fresh ideas and energy thatwe all benefit from.
This Page Intentionally Left Blank
an officialteen volunteer when I lly been a hospice volunteerall my life.My mother ha years, since before I was born. §he jokes that I learn I was still inthe womb. I was rai pice patients through osmosis while hospice philosophy and ideals, a belief that dying is a natural part o expectation that I would helpothers in my community. m e n I was a young child, my mother would takeme with her to see someof her patients who enjoyed and wanted to be with children. At Christmas, I would go with her and some of the other hospice staff to sing Christmas carols to the patients. Mom always told me what to expect before we entered each home. I clearly remember one elderly, dying patient. Mom told me that the patient would not e to opedy respond to me, but she ~ o u l dbe able to hear mesing to her. n we went into the room, the patient’s eyes were closed, and her breathing was labored, I was on the side of the bed, Mom was behind me with her hands on my sho~~lders as I peered through the side rails of the bed. As Isang, the woman turned her head and looked me straight inthe eye. I reached through the side rail and placed my a toothless smile. Something in her manner and actions hand in hers. §he gave me made my heart melt as I saw the joy and happiness expressed in her this simple visit. From that time on, I knew I wanted to help those at life. I did not then understand the benefits that would come to me tivity. Teen volunteers are a wonderful resource for hospice or any other ~rogram. Teen volunteers often begin in high school, continue volunteering throu~houtcolgo on to serve the communities inwhich lege, and find such satisfaction that they they live and work for the rest of their lives. At The Hospice of the Florida Suncoast, teen volunteers undergo a %&hour training course just like any other hospice volunteer. In addition, special teen volunteer classes are designedto provide a peer learning experience and to reduce learning anxiety. Teen classes are often taught at the high school, area churches, or nursing facilities for easy access to training. Recently, Hospice of the Florida Suncoast educators trained teens to teach I was honored to be one of the initial teen educators in the pilot trainother teens. ing, and I believe it is a very effective program. Allowing properly trained teens to teach promotes communicationbetween educators and students.T 73
INTERGENERATIONAL APPROACHES TO HOSPICE
ucators can tell stories, provide support, and effectively relate hospice experiences to students their own age. We can identdy with teen volunteers’ concerns and calm fears they may have about caring for dying patients. Students can also relate to the educators, creating abetter learning environment. We also have a Hospice Teen Council, which comprises the leadership group and represents the teen hospice volunteers in our high school. The Teen Council, which is composed completely of teens, allows teens to work together in a positive and comfortable environment. The Teen Council benefits high schools by bringing the opportunity for service-learning to high school students, as well as bringing positive recognition for the school itself. The Teen Council at my school, Palm Harbor University High School in Palm Harbor, won the President’s Points of Light award in1998 and has many timesbrought the school andthe hospice positive attention from both local television and newspapers. Additionally, the Teen Council creates bonds among its participants. Our Teen Council feels like a giant family, insofar as you know someone always cares about you and is always there to talk or support you, which is especially importantwhen working with the terminally ill. I have made many close friends through my experience. Working with a group of such caring and compassionatepeople is a blessing I am glad I received. The strength of the council lies in its ability to foster teamwork and commitment, and to provide teens who have similar beliefs and morals with the opportunity to meet one another and engage in constructive activities that touch many people’s lives. I know parents also enjoy having their children involved with the Teen Council because they know where their kids are after school! Staff at The Hospice of the Florida Suncoast are kind, knowledgeable, and appreciative, and they do their best to match teen abilities and preferences to volunteer activities. Basically, teens cando just about anythingif the hospice can recruit and train them. Teen volunteers participate in all fields of hospice. Some volunteer in the office, and others visit patients in their homes, nursing facilities, or assisted living facilities. Many teens participate in seasonal fund-raising events, and others work in the thrift stores. I participate in many of the different areas, including visiting patients and their families, videotaping life reviews, setting up the hospice fashionshow, gift wrapping atthe holidays, workingon Trees of Love (holiday trees decorated with ornaments in memory of patients who have died), and other fund-raising activities and office work.I help by typing, workingon the database, setting up for conferences, and assisting with teen training. I have also helped the maintenance departmentby sanding a mile-long boardwalk our for hospice patients at the hospice residence. I am comfortable in any hospice setting, helping in any way I can. We have many girls and boys in our teen program. The girls naturally migrate to hospice. There are no real secretsto getting teenage boys to volunteer, butmaybe I can provide some tips. Food is always a positive factor. It does not haveto be anything fancy or major. As long as the food is consumable, teen guys will be there. Teenage boys have a soft side, but in today’s society they have a hard time show-
ON BEING A TEENVOLUNTEER
75
ing it. A hospice must provide a gentle transition to working with patients and families. Most teenage boys like to begin with tasks like office work, computer work, or manual labor, suchas sanding boardwalks-one of the more popular activities at our new hospice residence. Once they get comfortable with those areas, they can progressto working with patients. Like many people in a new situation, inmy experience, boys often prefer that another person-another teen volunteer or a staff member-goes with them the first couple of times to see a patient. I thinkone of the most effective waysto recruit teenage boysis through the girls. Tell the girls to bring some of their guy friends to a certain event or training. Boys will usually followthe girls, and once they are exposedto this type of work, all the fears and myths are dispelled, and they usually stayfor their entire high school careers. The main barrierto getting teens to hospice is lack of howledge. Teens don’t really know about it or the benefits that accompany such a wonderhl volunteer opportunity. I was lucky because I already knew the benefits before I could hear any myths. Spread knowledge among the teens and espose them to the positive aspects of end-of-life care. One of my favorite volunteer activitiesis helping with a life review. A life review is a chance for patients to tell their life story on video for their family and friends, who may or may not be able to be with them during the last phases of life. The video can become a keepsake for the survivors and can provide good memories to help the family through the grief period. Sometimes the patient describes parts of his or her life no one has ever heard about, not even the closest family members. Life reviews have given me precious moments I will always remember. Although all mypatients who do life reviews claima special place inmy heart, some in particular stay in my mind. One such patient was an African American man in his early fifties, diagnosed with lung cancer. On the day I went to meet him to do his life review, I was going through what I thought was a tough time. I was overloaded with schoolwork, had just broken up with my girlfriend, and had to drive my mother’s station wagonto school because my car was inthe shop. The life review I did with this gentleman made me realize that these problems were self-centered, materialistic, and not all that important. The patient had been orphaned at a young age and had lived in poverty all his life. Yet, despite all his troubles, he was a radiant and happy man. He told me about his childhood. He had lived on the streets with his brother. If he had gone to a foster home,he would have been separated from hisbrother, whom he had promised his mother he would look after before she died,He spoke aboutcivil rights, his beliefs about his culture, and the importance offamily.Most importantly, he told me things about life I had never really considered and problems I had never really had to face. He was so destitute all his life that, in fact, he had just received his first and only telephone from the hospice three months prior to my interview so that he could talk to his family, ease his anxiety, and get intouch with his caregivers.He gave me hope for the future and appreciation forthe things in lifeI had taken for granted, like my home and my family (even my little brother). Sharing that day with him, his common sense and wisdom left a permanent markmy in mind and as we all do throughout life. This exin my heart. As a result, I grew emotionally,
76
INTER~ENERATIONALAPPROACHES TO HOSPICE
perience ins~iredme to do more to ain the wisdom that patients have to pass on to us as vol~nteers.
vate homes. 1 believe
of life is an immeasurable e x p e ~ e ~ c e . of people can. Not only will you be helping the hospice itself, its patients, and their families, but also you will be helping and guidingthe hture generation by allowing them to positively experience life, death, caring, and compassion.
EMILY TIBBETTS
2" Hospice of the Florida Suncoast Pinellas County, Florida
77
78
INTERGENERATIONALAPPROACHES TO HOSPICE
nicate with patientsafflictedwi Through volunteeringwith these lack of purpose and meaning that fined in a nursing home. I have fo by attempting to understand his with patients about their childh families, I attempt to interact For example, on our week mentia, Michael an few rooms downthe hall-c The nursing home staff was ten left to yell until her voice and I would often wander d versation and found that sh She believed that her stuffe if they were people. Micha world. We talked to her to us about their lives. confused patients,I h tact helps these patie Isabel, the patient ten work on those t painted, so I help h visits with elderly, seeing a youthful fa chair and hold her hand, she enjoy times it reminds a grandmother of visit her, or it may nally became involved as a hospice volunteer to ~ l f ithe ~ l service r e ~ ~ i r e m eset nt forth by the Inter~dtional ~accalaL~reate that replicates the European baccalau tion, it has certainly cometo be a maj tinue working with a hospice progr experience at Georgetown Univers involvement with hospice much more than I ever dreame me to value every moment of my life, as it is certainly ve On January 13, 2000, my grandfather was diagnosed, spleen, and lymph nodes. He died one month later on say, there was an extremely limited time betw we could prepare for the dreaded reality of been trained as a hospice volunteer,I have 1 as a celebrationof life. I feel thatI was able him during the final moments thatwe did ful. m e n I visited him 2 weeks before h I would simply sit by his bedside and hold difficult for him to speak to us, he remin
LEARNING TO VALUE EVERY MOMENT
79
childhood memories and commented on the incredible change that has taken his generation to mine. He told mehow proud place inthe morals and values from he was of me and how he so hoped to know where Michael and I would be going to college. Shortly afterwe had to go home to Clearwater, Florida,though, he grew so weak that he could no longer talk on the phone with me. To make up for that lack of communication, I e-mailed my grandpa every day until he died. My grandma printed out each of the e-mails and read them to him in his bed. I told him how much I loved him, how proud I was to be his granddaughter, and how much he had taught me growingup. Grandpa and I had been writingletters back and forth for the past 10 years. I have kept each of his letters and put them into an album. I will forever cherish those precious letters, as they allow me to remember the special times and conversationsI had with my grandfather. As a hospice volunteer, I have experienced both painful, heart-wrenchingmoments and joyous celebrationsof life. I have come to feel new emotions through entering the lives of several elderlypeople. Hospice has been important in my life because it has challenged me to serve others, while simultaneously teaching me that every day is a gift.
This Page Intentionally Left Blank
BRENDA COMCE
The Hospice of the Florida Suncoast Pinellas County, Florida Holding the hand of a dying elderly person as he or she peacefully drifts away can change the way someone looks atthe world, especially a teenager.I never imagined that at 16 as a hospice volunteer,I would share moments like thiswith terminally ill patients. Little did I know at the time that my experience as a hospice volunteer would teachme so much aboutlife and death andso strongly influence’ my perspective on living. Both of my grandfathers died in hospice care when I was a freshman in high school. Until that year, I was unfamiliar with hospice. I sawthe care the hospice nurses gave mygrandfathers,which allowed themto die peacefullyin their homes with family and friends around them. This was my first impression hospice of care, and it had a profound effect on me. Later that year, I decided to become a volunteer so that I could provide the same care and comfort that my grandfather§ and family had received. In my first volunteer experience with hospice, I served as a teen mentor to a 12-year-old boywith a life-threatening illness known as tricuspid atresia, This disease made him prone to congestive heart failure and irregular heartbeats and, therefore, limited his physical activity. As a teen mentor, I provided emotional supp~rtfor this boy by helping him identify his other interests and by takin mind off his illness.I visited him weekly and often assistedwith homework, him fishing, or simply talked with him about life. It was a trulyincredi~lefeel to see him smile and to know that I made
eater satisfaction with my own life, as
portent of death often o~ershadowsa lifetime of memories, es. Instead of allowin death to impose on life, I have focus of my work with hospice patientsto one this d focus intomy work is t that I i n c o ~ o r a t ~ Camera, Action!” This rant started a meanin 1
82
INTER~ENERATIONALAPPROACHES TO HOSPICE
vides terminally ill hospice patients with the opportunity to share their memories, thoughts, and feelingswith their families and friends on video before they die and their memories are lost forever. Through conducting severalof these life review videos, I had the opportunity to witness patients with terminal illnesses commemorate their lives, perpetuate their legacies, and revel in their accomplishments. I remember one woman’s story in particular. She shared her memories of growing up in the Depression and of what life was like as she moved from place to place. She expressed to me how wonderful she thoughtthe video project was becauseher grandchild, who would never get the opportunity to meet her, would be able to hear her story as a reI also cresult of this special video. Her positive attitude was truly an inspiration! ated a scrapbook for a patient suffering from AIDS. Several other students and I worked with her to compile a book of pictures and stories of her life. m e n we returned to present the book to her, tears were rolling down her face. She was so grateful to have a book of memories she could leave behind for her family. I have often been asked aboutthe depressing nature of projects like these, but I always respond by explaining that each project is not a mournful or gloomy enterprise but rather a celebrationof a person’s life. One of the greatest challenges I encountered in my work with the terminally ill was through my unique friendship with a 107-year-old hospice patient named Joe and having that friendship cometo an end in November 1998. It was indeed a challenge to grow close with Joe, knowing that our time together would be life-a century of memories, short. I overcame this challengeby focusing on Joe’s history, and accomplishments. Each time I visited with Joe, I was guaranteed to felt that learn somethingnew, whether it was a history lesson or a lesson onI life. Joe, like all terminally ill patients, should live until he died, so I brought him lunch on occasion and shared pictures with him. When the time came for Joe to pass on, it was extremely difficult to focus on life amidst oxygen machines and tube one of Joe’s last feeding, yet I continued to hold his hand through it all. On evenings, he told a friend and me that we were “the best gifts a man could ask for” and that he would never forget us. It was at that moment that the familiar hospice message, “Every day is a gift,” truly touched me. From Joe, I learned to cherish this gift of life and to help other hospice patients do the same by offering my compassion during the last stages of their lives. My hospice work continued this past year after I graduated from high school and attended the University of Virginia. I began working with the local hospice in the area to start astudent hospice volunteer program the at university. We have organized an on-campus training program for interested studentsto become volunteers, beginning in September 2000. I have started an organization with these students called Student Hospice Volunteers, which will provide care to hospice patients and a support network for the student hospice volunteers. This fall, I wrote a community service grant and received the funding to begin a project called “Living Legacies”-very much like the one I initiated at The Hospice of the Florida Suncoast. The purposeof this project is to continue to celebrate the lives of terminally ill hospice patients through life review videos, journals, and scrap-
END-OF-LIFECARE: A PERSONALREFLECTION
83
books. We are all very excited about the upcoming fall training and the “Living Legacies” project. My hospice experiences have had a very positive impact on my life. I know that volunteering with terminally ill patients is somethingI will continue for the rest of my life. In fact, working with a hospice patient who had Alzheimer’s disease has also influenced my career plans to become a neuropsychologist. I look forward to including the needs and concerns of dying patients in my life’s work.
This Page Intentionally Left Blank
St. Thomas Hospice
ANNA L.ROMER,EdD
Education Development Center, Inc. Newton, Massachusetts
rs;RT OVERVIEW OF THE JUNIOR VOLUNTEER PROGRAM
Patrick, a junior volunteer at St. Thomas Hospice in Burr Ridge, Illinois, recently appeared on the Oprah Winfrey Show with Mariam, the hospice patient whom he assisted, for a program entitled “Unlikely Friendshzps. Mariam is 90 years old, blind, loves music, and plays the piano. Patrick was assigned to her after she told her hospice nurse that she “missed the voices ofyouth.”During their visits together, Patrickaccompanied Mariam on the piano with his guitar. Ultimately,Mariam wasdischarged from hospice because sheno longer qualified. For her going away party,Patrick’s mother bought some hand lotion for Mariam. Patrick dismissed this gift as inappropriate and then went off to get her a real present. He reappeared some time later with an electric keyboard that Mariam could play on her lap, in her bed, on the days she could not get to the piano. He then taped the C-notes,so she could easily find them and play. Even as hospice staff like telling this story, Kay Hammer reports that Patrick does not feelhe did that much. It is clear, however, that he listened to Mariam, realized what was important to her, and then acted on the basis of this attentiveness to bring her a g@ as unexpected as it was just right. “3en the two were on Oprah, Mariam joked, “We’regoing to start a band.” ”
Marijo Letizia, PhD, at Loyola University Chicago School of Nursing, with Ms. Hammer and Barbara Zerby, staff at St. Thomas Hospice in Burr Ridge, Illinois, have developed a junior volunteer program, which contrasts in size and scope with that of the The Hospice of the Florida Suncoast.Staff at St. Thomas Hospice consulted with Sandra Mahood to design this program,which started with just 14 teen volunteers two years ago and now has 27 junior volunteers. The small size of this program allowsthe volunteer coordinatorsto match individual teens with carefully screened patients and families. Wendy Tinnon, a volunteerwith a master’s degree in education, interviews the family and patient to confkm that the 85
86 INTER~ENERATIONALAPPROACHES TO HOSPICE
existing needs are a good match for a particular junior volunteer as welltoasassure that the teen will be welcome and safe in that environment. St. Thomas Hospice is perhaps typical of smaller hospices across the United States in termsof size and available resources. It has an average patient censusof 60 patients, of whom approximately7’5 percent are intheir own homes. The hospice is a member of the Advention Health System, Midwest Region. The goal of this program was to increase the scope of services offered to dying patients inthe c o m m as~ well ~ asto engage youth ina palliative care effort while developing these young people’s skills and connection tothe c o m m ~Dr. ~ .Letizia wrote a grant proposal to the C o m m Memorial ~ ~ Foundation @€insdale, 11.)to implement the project and fund a full-time volunteer coordinator position, which is currently shared by Ms. Hammer and Ms. Zerby. These staff members workMs. with Tinnon to assist with the rec~itmentand support of teen volunteers. The criteria for involvement include: 9 9 9
9 9 9
Age 14-18 (younger teens can do office work) Parental consent Screening interview during which. staff inquire about motivation for participation Completion of junior volunteer training Ability to commit adequate time Negative TI3 test
Teen Volunteers engage in a rangeof possible volunteer services. They are expected to provide emotional and practicalsupport to families facingthe loss of a loved one, acknowledge limitations, maintain confidentiali~,submit oral reports to coordinators, participate in in-services, and maintain required records of patient and family contact.
St. Thomas Hospice staff members have recruited students in local high schools through promotional materials and contact with school counselors. Word ofmouth has been the best source for generating interest. Teens participate in a 3-hour training session, which covers the following topics: an overview of hospice, Junior Volunteer roles and responsibilities, issues of confidentiality, communication with patients and families, and documentation skills. Staff has designed listening exercises and several self-reflection exercises. One exercise involves asking students to write down nine peopleor activities that are importantto them andthen to give them up one by one. The group then discusses this process of having to contemplate losing these key people and activities in their lives. Volunteer coordinatorstry to help Junior Volunteers prepare to encounter the unexpected during their home visits. Help is always a phone call away, and volunteer coordinators andthe Junior Volunteer traineraim to keep in close contact with Junior Volunteers who are visiting patients and families in their homes.
ST. THOMASHOSPICE JUNIOR VOLUNTEERPROGRAM
87
After training, volunteer coordinators combine group activities for teens with individual volunteer activities. Junior Volunteers are encouraged to bring a friend who has not been trained as a volunteer to periodic Pizza and a Pal parties to spread the word, build awarenessof the program amongtheir friends, and engage in a project for hospice patients and families. For example, the teens may spend an afternoon making dried soup packets, which they then deliver to hospice families who have indicated an interest in receiving them. These gatherings offer an opportunity to socialize in the service of creating aproduct for others. Volunteer coordinators run approximately four group events per year. Throughoutthe year, Junior Volunteers make individual visits to patients and families,who are carefully matched by the volunteer coordinators and Junior Volunteer trainer. NT Ms. Tinnon, an adult volunteer who works with and trains the Junior Volunteer coordinators, talks to the hospice nurse and then interviews the family before matching a Junior Volunteer with the family. Some of the questions used in determining whether a patient and family are appropriate for ateen volunteer are: e e 0 0 0
0
Is the patient in touch with reality? Does the patient want a volunteer? Is the family aware of the reason the teen is coming in? Is the patient’s pain well controlled? Is the patient on oxygen? Will this be a safe environment for the teen?
Once a patient and family are deemed a good match for a Junior Volunteer, the volunteer coordinator talks to the teen so that the Junior Volunteer can anticipate what he or she will encounter and what the patient will look like. St. Thomas requires that the family caregiver be at home duringthe Junior Volunteer’s visit. Junior Volunteers visit patient and family alone and “what do needs doing.” One Junior Volunteer helped a patient clean out drawers, and while doingso, the patient reminisced about her life. Another hospice patient was literally trapped in her home becauseshe could not negotiatethe stairs. Teen volunteers built a ramp under the supervision of one of the adult volunteers who had worked for Habitat for Humanity. The patient was able to get outside again before she died two weeks later.At present, a Junior Volunteerwho speaks Italian has been matched with an Italian-speaking family where she is volunteering with the patient’s husband. She is listening to the husband’s stories of his youth during World War I1 in Europe. No one on the St. Thomas Hospice speaks Italian, so in this instance, this Junior Volunteeris filling a need for companionship that no other staff member could accomplish. In this small program where staff members h o w each Junior Volunteer quite well and are in close communication with these teens, the coordinators believe that they can give the teens a great deal of leeway to meet with patients andfamily members and dowhat needs to be done.After each visit,
88
INTERGENERATIONALAPPROACHES TO HOSPICE
Junior Volunteers make aphone call to trainer Ms. Tinnon or to Ms. Zerby or Ms. Hammer to report on their visit. If the coordinators do not hear from astudent, they call the student. Although exact numbers of home visits vary, at any given time some Junior Volunteer is offering one-on-one contact to a patient orfamily. Staff members know that their Junior Volunteers are busy and attempt to avoid focusing on actual amount of time volunteered but rather on the quality of the time spent. Although one of the entry criteria is having adequate time, the volunteer coordinators do not make an explicit time commitment requirement and they do not judge students by how many hours they can give.Ms. Hammer noted that Patrick did not spend that many hours goingto Mariam’s house, yethe clearly made a difference inher life. KEYS TO SUCCESS
The St. Thomas Hospice Junior Volunteer program is made up of a small group of motivated teens. The coordinators feel that they b o w every student well. This intimacy seems to allow the volunteer coordinatorsto trust the students to enter into hospice patients’ and families’ lives in personal ways. The matches between Ms. Hammer asks, Junior Volunteers and patients are idiosyncratic and particular. “Who would be the best person?With adult volunteers,we think more about time availability, but with the kids, it’s about finding a good match. Which JuniorVolgood match unteer hasn’t been out to see a patient lately? Would that persona be with this patient?What is the need, and who can fill it? Who can go out and mow a lawn?” WHAT’S AHEAD
Coordinators are training Junior Volunteers to use a new oral life review workbook they have developed and are currently piloting. This workbook is a series of open-ended questions designed to elicit memoriesof what has been important to the person. The plan is to have Junior Volunteers practice using this tool ina nursing homewhere patients are not dying, to discover how long it will take them the to complete the 10 segments. St. Thomas volunteer coordinators are stressing process of reminiscing with patients aboutthe past, notthe end product. Students will take a draft copy of the workbook, ask patients in what section they would like to start (my favorite things, school days, family), and then turn on a tape recorder, write, or listen. Thenthe Junior Volunteers willgo home and transcribe the tape or rewrite their notes. When the oral history is completed, Junior Volunteers will turn it into a scrapbook for the older person.
'Volunteerism in Italy An Interview with CLAUDE FUSCO m
N
The Italian League Against Cancer Milan, Italy Ms. Fusco Karmann heads the Volunteer and Care Departments of the Milan section of the Italian League Against Cancer as well as managing the Volunteer Training School. The Italian League, a national organization founded 70 years ago with 103 sections across Italy, has two main purposes: cancer prevention and health education and providing assistance to persons with cancer. This nonprofit group has had a presence in Milan for 50 years. Gianni Ravasi is the president of the Milan section, and Laura Aguzzoli serves as director there. Due in part to the Italian League's lobbying efforts, the Italian government recently passed a law to fund palliative care and hospice through the national health system? Ms. Fusco Karmann is in charge of the volunteer training and support effort as well as patient services at the Milan section of this organization, In the following interview, she speaks primarily about recruiting and retaining more than 700 adult volunteers, who work in the Milan area to support the efforts of the Italian League. She also reflectson the idea of including adolescents in palliative care and hospice and whether this idea translates into the Italian health care setting. m a t follows are the edited comments from an interview with Ms. Fusco Karmann, which was conducted in French and translated by Anna L. Romer, EdD. *
Anna 1;. RorneE Tell us about the volunteer aspect of your organization. Claude Fusco Kamann: In 1956, long before palliative home care came into a volunteer home care service. In being in Italy, several prominent women began 1984, we realized that we needed to upgrade and expand this traditional volunteer base with greater training and more structure so as to meet the goals of our or~~ization. Sixteen years ago, Marcello Tamburini, a psychologistwho directs the Division of Psychology at the National Institute of Cancer in Milan, established this new
*Anna L, Romer would like to thank Damien Botton,who transcribed the interview sheconducted in French and served as linguistic consultantto her in preparing the interview andthen translating it.
90
INTERGENERATIONAL APPROACHES TO HOSPICE
volunteer program for the Italian League Against Cancer. The new volunteer training school beganwith just 10 students. We now train our own volunteersas well as those from neighboring associations that lack the necessary resourcesto do so. At this point, we have an army of volunteers to help us accomplish our mission. We have very few paid staff in each of the sections of the Italian League, and it is thanks to the volunteers that we get our work done. We have approximately 5000 volunteers across Italy, which includesa group of 773 volunteers right now in Milan. The exact number fluctuates,with an average of about 700 volunteers in the Milan section. Our school has been quite successful in Italy. People consult us regularly about how it works and request information about the process of training volunteers. This interest led to the establishment of a second wing of the school-to train new, nonprofit, volunteer-based cancer associations in management and organithe Italian nonprofit volunteerzational behavior.We run an annual course for all based cancer associations, and even the Swiss-Italian associations participate in our courses in orderto improve their management skills and general preparation as a volunteer organization. ALR: What doyou meanby preparation?
CFIK: We developed a course on management, communication, and crisis management. This course hastwo sides to it; one side dealswith the association from the point of view of its management andthe other from the point of view of staff. Similarly, we look at the same problem from the volunteer’s point of view and from the patient’s point of view and then try to answer some of the following questions. How does this problem affect all the people in it? If an association is in crisis, how does it resolve the crisis? If a group of volunteers is in crisis, what led to this situation?How does the group resolve the crisis? We always deal with problems on these two levels: systems management and the interpersonal level. At the same time, we organized consensus conferences on the subjects that were of greatest interest to us. In collaboration with participating organizations, we produced a curriculum for training volunteers and a codeof conduct for volunteer~.~~3 :Describe
the volunteer recruitment and selection process.
CFK: During the year, we receive about 400 requests from people who want to volunteer from both the city of Milan and the province of Milan, a region of apa rather rigid selection process proximately 3.7 rnillioninhabitants.Wehave whereby about one quarter of these candidates are pickedto go through the volunteer training process. :How
do you select the volunteers?
CFK: There aretwo rounds of selection. Whenwe receive a requestto volunteer, we send out a letter describing the criteria for participation. Candidates who do
VOLUNTEERISM IN ITALY 91
not conform to our requirements do not come to the general information meeting. :W
a t are the criteria for participation?
Volunteers must be between 18 and 65 years old. We do not accept medical or nursing students or students training to be psychologists because we believe that in working as part of a professional health care team, the volunteer needs to have a distinct role. We want the volunteers to be ableto work as a team with fellow volunteers andwith the caregivers from the health care team. We also ask that volunteers not have a closefamily member who is terminally ill with cancer. In that case, we fear that the volunteer may be coming to us in search of ways to care for his or her family member rather than with the goal of helping others. We prefer to support this person in his or her family caregiving and to help this person during this stage of the illness. Later, he or she can become a volunteer. We consider a family member readyto volunteer afterone year of mourning. We ask that volunteersgive us either two half-days of timeper week, one long evening, or one night per week. We do not set a time frame for how long they must volunteer. We generally replace ten percent of our volunteers each year. Lastly, we do not wish our volunteers to be cancer survivors. Other self-help organizations madeup of cancer survivors already exist in Italy. For ourselves, we thought it better not to recruit cancer survivors, giventhat our volunteers often have to spend time with dying patients. :W
a t is your reasoning here?
: There
are already organizations for cancer survivors-breast cancer or throat cancer survivors-and these organizations have support groups for patients during rehabilitation after an intervention. We prefer to train people to provide support and companionship to patients at all stages of the illness. We seek those persons who are balanced and will not have to relive difficult experiences that they have already undergone, with the risk of disrupting their equilibrium.
Once the volunteer applicants meet the initial criteria, do you have other steps to becoming a volunteer? Howmany of the 400people who indicated an interest in volunteering remain? : There are usually about 200 candidates left, and only half of these are accepted as volunteers based on the Minnesota Multiphasic Personality Inventory (MMPI) and the interview we do with each candidate.A psychologist interviews each candidate individually for an hour.
:W
a t are you looking for in the interview?
92
INTER~EN~RATIONAL APPROACHES TO HOSPICE
C F E We are lookingto understand the candidate’s motivation. Why does this person wish to help patients suffering from cancer? We believe that this is one of the most d ~ ~ c ubranches lt of volunteering, and we want to be sure that this interest is truly grounded in a spiritof solida~tywith others. We wish to screen out those persons who are lookingto resolve a personal problem or sdfer from hypochondria or might be drawnto volunteering becauseof a lack of interest in their own lives. We work on this all year long with our team of 12 psychologists, three of whom specialize in the selection process. Selecting the volunteers is a Ml-time job from October through December each year. :
at kinds
of people end
up in your pool
of 100 new volunteers each
year? : Seventy-eight percent of our volunteers are women, 22 percent are men, and 45 percent of this group are between the ages of 40 and 50. Manyof the women no longer have young children and are not working outside the home. In Italy, we also have many teachers who work only in the morning. In addition, many people retire at a young age-say 50 to 55-and they no longer have anything to do. So, instead of playing cards in the cafk, they prefer to work as volunteers with us. In Italy,one can retire after a particular n m b e r of years of work, someti~es20 or at a maximum after 35 yearsof work, rather than at a particular age, as it is in other countries. This policy has allowed many to retire at age 50.
:How
many people do you train in Milan? How long does the course last?
Our annual training course is 32 hours long, andwe train 100 to 130 people per year. Until now, the training took place during two 2-hour evenin sions per week, in other words, four hours per week over the course of weeks. This year, we are changing everything and will be tryingto mn the same c u ~ c u l u min four full days of training from 9:OO AM to 430 PM. The reason for e is that many of the volunteers are coming from some distance, and it has been difficult for them to come to Milan twice a week overten weeks. This time, we will be ~ n n i n gthe training for a full day, one day per week, four times over the course of a month.
use ~ e s ~ rthe i ~course. e
VOLUNTEERISM IN ITALY 93
CFK The course itself is designed to provide information andto encourage selfreflection on the key themes: death, one's attitude toward death and illness,the family, teamwork, the role of volunteers, and ethical and spiritualaspects across different religious traditions. We now have more foreigners in Italy, so we are also including more information on diverse cultural and religious practices. The class lasts for two hours. Thus, there is time for an introduction to the topic, a time for reflection, and then sharing observations on the topic. We are dealing with 130 persons, so we cannot organize interactive working groups with simulations. We do not do small group work in the course. However, our psychologists have designed these sessions and have comeup with ways of provoking discussion on these topics even in a largegroup, so these sessions are quite interactive. A l R : What kindsof exercises have they constructed? CFK For example, during the session about the family, the trainer asks the vol-
unteers to designate an animalto represent each member of their family of origin family. Theythen ask the volunteers to reas a way of exploring their role in that peat the exercise with their current families in mind. The hope is to get all the participants to reflect on family dynamics and the different roles family members play. To explore tacit assumptions about death and dying, the psychologist asks volunteers to brainstorm words that cancer, death, pain, and illness evoke'for them and then puts those words on the board. Later, the group organizes these responses and discussesthem. In this way,we hope that participantsgain greater awareness of their own attitudes about illness and death. The goal ofthe volunteer training course is to touch on all the key topics, which will then be revisited during supervision and practice. The training allows for a moment of making contact, for reflection on these themes, and a summary knowledge of illnessandpalliativecare.Wecover these topics quickly andattempt to give only basic informationon these subjects. Ourmain goal is to get volunteersto begin to examine their ownways of responding and theirown role inthe process of providing care to those near the end of life. VOLUNTEER ROLES AND RESPONSIBILITIES ALR: What kinds of activities do the volunteers engage in?
CFK: Our volunteers do all kinds of things.
Three quarters of them offer some kind of direct care with patients. Some volunteers work inthe hospital. We have 200 volunteers at the National Cancer Institute of Milan, a nationally prominent
94
INTERGENERATIONALAPPROACHES T O HOSPICE
comprehensive cancer carecenter, as well as others in the three hospices in Milan and the surrounding area. We have placed some volunteers in the oncology d~partmentsof two other hospitals. Some volunteers help by transporting patients to and from the hospital for their radiotherapy or chemotherapy appointments. We have two main roles for volunteers located at the Cancer Instituteof Milan. The first role is thatof guide and general source of information. These volunteers work inthe lobby of the hospital and in allthe departments. They accompany patients andfamilies and givethem any necessaryi ~ o ~ a t i to o nfacilitate their visit. The second groupof volunteers in the hospital works onthe wards and helpsthe hospitalized patients in a thousand small ways. They do not usually help feed patients in this hospital,but in other hospitals, they do. A third group of entertainment volunteers creates performances of some sort for the patients every two weeks. They also spend time with patients. :Do the volunteers who are based in the hospital provide less psychological or physical help than those who provide homecare?
CFK No, On the wards in the hospital, they provide a great deal of informal psy-
chological support. They go from room to room, speak with patients, and attend to their needs. If a volunteer becomes awareof a social or economic need, he or she lets us know. In the hospices, we have volunteers on duty 24 hours a day, and they collaborate closely with the health care team, as well as providing bereavement support to the families. :r f volunteers become aware of a problem with a patient in a hospital setting, whom do they consult?
: If it is an urgent problem, they would come to me. If it is simply an issue of communication or some specific interaction, the volunteer will bring it up at the support/supervision meeting,which occurs every three weeks. :Do volunteers take on multiple roles, or do they specialize and perform one type of activity at a time?
CFK Generally, the volunteers serve inone role at a time.We do ask that all volwho have unteers helpus with our fund-raising efforts, however. Otherwise, those
chosen to work in the hospital stay there. If they want to switch settings, we change their assignments, butwe ask that they completeone year of activity in a particular setting before movingto another. : What is the distribution of volunteers across the dvferent kindsof settings and tasks? :Approximately
580 volunteers offer direct patientor family contact, and of those, about 250 are in hospitals,80 are transporting patients,1’70 are doing some kind of home care, and 80 are involved in our18 early diagnosis consulting rooms,
VOLUNTEERISM IN ITALY 95
which are situated acrossthe province of Milan. The volunteersin this last group receive visitorsto the consulting rooms and give information about our activities, The remaining 100 plus volunteers help usin our offices and with our fundraising efforts.
; Is there any kind of stigma attached to receiving a volunteer to assist with home care, given this situation you are describing?
CFK: No. If the nurse tells the family that the volunteer will be coming, thatthe volunteer is not asking for anythingor demanding any kind of payment, and that we can guarantee the probity of the volunteer, it reassures the family. Families are suspicious of volunteers, so the nurse needs to explain what the volunteer can contribute. Once the volunteer meets the family, we usually find that breaks the ice. Without the substantial contributionof volunteers, we would not be able to care for someof these patients at home.
how does it work, in terms of the volunteer making home visits-does a volunteer go alone to the home and decide what needs doing? :So
:The nurse andthe doctor assesses the situation, andthen at the weekly team meeting, they review the situation and ask the volunteer coordinator to choose
96
INTERGENERATIONAL APPROACHES TO HOSPICE
an appropriate volunteer. The volunteer accompaniesthe nurse on the first visit to this family or patient, In this way,the nurse introducesthe volunteer to the situation.
What kindsof tasks do the home care volunteers perform? C F E Volunteers do a numberof things in the home. They offer psychological support and practical support, and their presence can temporarily improvethe family dynamics aroundthe patient. The volunteer attempts to do what seemsto need doing. If he or she findsa dying patient who needs someone to hold his or her hand and no one else in the home is willing to do this, that’s what the volunteer does. If the volunteer sees that the house needs picking up, there is ironing or cooking to do, or children need to be taken to school, or that someone needsto go to the drug storeto pick up the patient’s medicine, or some other errands need to be r u n , the volunteer does them.Some volunteers don’t liketo see the physical side of dying and prefer not to help the nurse with the physical caregiving. :Are
volunteers allowed to participate in caregiving?
CFK: Volunteers are allowed to help the nurse with physical caregiving but cannot provide nursing care on their own. Those volunteers who wish to are allowed to help nursesmove or lift patients and bathe patients. Otherwise, volunteers may do anything that needs doing. :Do
the volunteers participate in the weekly team meetings?
depends on the team. Some teams have many members, andit would be too much.Also, we already ask the volunteers to attend supervision groups every three weeks, so we don’t want to fill up too much of their time with meetings. We prefer to have them invest their time in practical aidto patients. It is the coordinator who attends these team meetings andthen conveys the information to the chosen volunteer. : It
:How
do these support meetings for volunteers work?
Ten to twelve Volunteers take part in each support meeting, which occurs every three weeks. These meetingslast about two hours. : Who
runs these meetings?
:The coordinatoris also a volunteerwho has been chosen by the group. One two years andthen it passesto another volperson assumesthe coordinator role for unteer. The coordinator leadsthe fust part of the meeting, which deals with practical matters and logistics. Thenthe psychologist leads the last hour and a half of the meeting. The psychologist works with the volunteers to choose topics to adof how dress overthe year, which will deepen their knowledge and understanding
VOLUNTEERISM IN ITALY 97
to communicate with patients and families. The focus of these meetings is to deal with any issues that come up while volunteeringwith patients and families,to enhance volunteers’way of being with patients and families through education and selfkeflection, and to support volunteers engaged in this challenging work.
ent ti on that volunteers work in three hospices in the ~ i l a area, n Can you e ~ ~ l awhat i n you mean by the word “hospice,”as it does not always t~anslateliteral^. : You
am using the word “h~spice’~ in the En lish sense of the word. The hospices or palliative care centers are very new in Italy. They cu~entlycare for a large portion of patients suffering from cancer and patients in the final phase of AIDS. These hospices are connected to palliative care home care teams, which are based in the hospital, for example, at the Cancer Institute of Milan. The Cancer Institute of Milan does not currently have a hospice, but rather has a four-bed, palliative care service, anoutpatient palliative care clinic, and a home care team. Recently, a law was passed requiring that hospice and palliative care centers be of setavailable all across Italy-, Therefore, our volunteers work in a wide variety tings. Here atthe Cancer Instituteof Milan, people come to have their cancers removed, some die, and some are cured. It is an enormous hospital; we have 200 volunteers here. :I
I also direct the support services for cancer patients, quite apart fromthe volunteer services. We provide about 6000 interventions per year to support patients. These services range from economicsupport, for example, if the patient has lost his or her job, to social support or help negotiating the system, such as acquiring sickness certificates,which give patients accessto a set financial benefit provided by the national social security system for patients with cancer who have undergone major surgical interventions.
These services are free. Patients can pay an additional feeif they wish to have a private room when they are hospitalized,if they want to be hospitali~edin a private clinic, orif they want a very particular treatment and have private insurance. Medication that is necessary for treatment of the cancer is covered for everyone. :So, you coordi~ate both the volu~teereffort and the paid support services for patients and f a ~ i l i e s .
t together with all the volunteer coordi
we meet every month with a psycho1
98
INTERGENERATIONAL APPROACHES TO HOSPICE
ship skills and developing an awareness of group dynamics. These coordinators are all volunteers themselves. : Is
there a long tradition of volunteerism in Italy?
: Yes, this tradition dates back tothe 13th century with Misericorde, which was the first Italian volunteer organization and still exists today. We havea substantial religious volunteer force inItaly, which isinvolvedin many areas of life. Our group, the Italian League Against Cancer, is a secular group. :How
do physicians and nurses perceive the volunteers?
: Wedid a study to answer this question and found that physicians and nurses accepted them very well.* Duringthe month of Augustt when everyone goes away, all the remaining staff complain because there are no volunteers to help them. The volunteers are an additional workforce that is much appreciated.
: Have you evaluated the effects of volunteering on either the volunteers themselves or the patients and families, in any way? What would you like to measure or evaluate? :We are very interested in questionsof evaluation and finding a mechanism to judge if we are on the right path or not, or if we need to make a midcourse correction. We evaluate our training coursesby distributing anonymous feedback questionnaires. We ask the participants to assess the interest, their comprehension, the teacher’s skills, the organization of the course, and so forth.
Each year we celebrate the contributions of our volunteers. To give you an idea of the commitment of some of our volunteers, each year at these festivities we give 10 to 15 medals to volunteers to mark their 20-year anniversary of involvement. Last year, we had 80 medals, 45 were for five years of activity, andthe rest were m a r ~ n g10-year and 20-year anniversaries of active volunteering.We are extremely proud of our program becausewe have some extraordinary volunteers. I admire them, as I don’t know that I could do what they do.
+Traditionalmonth for vacation in much of Europe.
VOLUNTEERISM IN ITALY 99
L ~ S I O NOF ADOLESCENTS AMONG ~
O
L
~
~
E
What aboutthe idea of incorporating teenagers into the volunteer effort CFK: I find the idea admirable. It is a good idea but not practicable in Italy at the moment, as we have a law that requires volunteersto be at least18 years old [the age of legal majority in Italy]. Volunteers must also be insured. Althoughwe could insure minors, we couldn’t legally have volunteers who are minors. :I f
it weren’t for the law, would this kind of effort interest you?
CFK I would have to say, I don’t know. I have had young volunteers, those who are 18, 19, 120, and I realized that young people can have a very beneficial effect on elderly patients who are gravely ill. So, I have had some very positive experiences with young volunteers. But one of the disadvantages that we have noticed is that young people do not volunteer for long. Theycome, they stay for a while, maybe a few months, and then they leave because they are going to university or they fall in love and they stop volunteering! It is true. We invest a lot of money in our rigorous selection process, and so we pay attention to these details. Over the course of 16 years of working with volunteers, I can only remember five or six young people who were wonderful volunteers andremainedcommitted over a longer period of time. I will never forget them. When young volunteers are committed and continue to volunteer, they areoften better than more mature adults. They are more balanced, less fearful about what might happen to the patient, and more fatalistic. They don’t seem to be afraid of death or don’t seem to think of it, so they are able to face the task of keeping the dying patient company with a positive attitude, which benefits the patient. Let me say, however, we have very few young people who show an interest in volunteering. I don’t know that I could invest ina similar program givenour experience with attrition among this group of volunteers. It is interesting, however, and maybe this will inspire us to try something new to include young volunteers. : Given your long experience, including that with youngvolunteers, what would you advise others about the recruitment, selection, and training of young people?Are there important differences in training,for example, compared with training middle-aged volunteers?
100 INTERGENERATIONAL APPROACHES TO HOSPICE
GFK: In recruiting young people, you have to make them understand that thisis a serious activity, not just a pastime.A person has to be deeply motivated to become a volunteer.You need to find a way to assess motivation and attract those young people who won’t stop when they hitthe first difficulties. I have had young people enter the program, take part in the training, put on their volunteer jackets for the first time, go to their assigned department in the hospital, and come back, turn in their jacket, and leave because they hadn’t understood what this was all about. I recommend finding waysto promote reflection mong the young volunteers so that they understand what they are getting into and thatif they commit to volunteering to work in hospice or palliative care, they make a com ment to stay involved for a period of time. : Would it be possible to have a less intensive training or selection process for the younger volunteers-in a sense what you are asking for is ~aradoxical, m a t the American hospice leaders who recruit young people have found is that often the young people don’t know and can’t know inadvance what it is that they are becoming involved in, The act of getting to know these dying patients or even just doing useful things for these people seems to help some of these teens understand themselves and appreciate the potentia~of volunteering in new ways. : Yes, we could perhaps ask them about what they already knowhow to do and find waysto call on those strengths.In the end, the training hasto fall on fertile ground; itis not the training that makes the volunteer. A person decides to become a volunteer, and the training can help improve some skills. If we started with what the young people already know how to do and inquired abouttheir motivation to help others, we could offer a shorter, less timeintensive training. It wouldthen be just a question of getting them organized. : Would such
a ~ r o g r a mbe welcome in Italy?
:That’s a
difficult question. I don’t know. I would haveto see the results of these Anterican efforts. We are always learning from each other, so if the results seem to merit it, we could also trysome thin^ here. It is a new idea, and it is hard to know how it would play out here.
1, Toscani F. Usi
e STAS in a palliative care unit in Cremona, Italy: An interview with , by AL Romer. In: ~nnovat~ons in ~ n ~ - o Care: ~ L ~~ ~e a c tStrate~~al gies and ~nternational~ e ~ s ~ e ~ Volume t ~ v e s 2. . Mi! Solomon, AI, Romer, I(§ Heller, DE Weissman, eds. Larchmont, N Y : Mary Ann Liebert, Inc., 2001, pp. 155-16
VOLUNTEERISM IN ITALY
2. Fusco Karmann C, Gangeri I;, Tamburini M, Tinini G. Italian consensus on a curriculum for volunteer training in oncology. J Pain Symptom ~ u n a g e ~ e 1966; n t 12(1): 39-46. 3. Fusco Karmann C, Tarnburini M, Suprani A, SantosuossoA. The code of conduct of the volunteer. Supportive Care Cancer 1998;6(2):120- 124. 4. Fusco Karmann C, Tamburini M. Volunteers in hospital and home care: A precious resource. Tumori 1994;80(4):269-272.
Selected references by contributors to this part: Fusco Karmann C, Gangeri L, Tamburini M, Tinini G. Italian consensus on a curJ Pain Symptom Management riculum for volunteer training in oncology. 1966;12(1):39-46. Fusco KarmannC, Tamburini M. Volunteers in hospital and home care: A precious resource. Tumori 1994;80(4):269-272. Fusco Karmann C, Tamburini M. Guidelines in palliative care for voluntary service 10(4):27-30. in Italy. Italian League against Cancer. J Palliative Care 199-4‘; FUSCOKarmann C, Tamburini M, Suprani A, Santosuosso A. The code of conduct of the volunteer. Supportive Care Cancer 1998;6(2):120- 124. Letizia M,Shenk J, Jones TD. Intermittant subcutaneous injections for symptom A retrospectiveinvestigation. Hospice J 2000;15 controlinhospicecare: (2):l-11.
Letizia M,Zerby B, Hammer K, Tinnon W. The development of a hospice junior volunteer program.American Journal of Hospice G Palliative Care.2000;17(6): 385-388.
Other selected references: Ames B, Youatt J. Intergenerational education and service programing: A model for selection and evaluation of activities. Educ Gerontol 1994;20(8):755-764. A structured sysBeechem MH, Anthony C, Kurtz J. A life review interview guide: tems approach to information gathering. Int J Aging Hum Dev 1998;46(1): 25-44. Black G, Haight BK. Integrality as a holistic framework for the life-review process. Holistic Nurs Pract 1992;7(1):7-15, Brown LM, Gilligan C.Meeting at the Crossroads: Women’s Psychology and Girls’ Development. Cambridge, MA: Harvard University Press, 1992. Burnside I, Haight BK. Reminiscence and life review: Therapeutic interventions for older people. Nurs Pract 1994; 19(4):55-61. Burnside I, Haight BK. Reminiscence and life review: Analyzing each concept. J Adv N U ~ 1992; S 17(7):825-862. Byock I. w i n g Well: Peaceand Possibilities at the End of Life. New York: Riverhead Books, 1997. Byock I. Beyond symptom management: Growth and development at the end of life. EurJ Palliative Care 1996;3(3):125-130. Center for Medicare Education. Managing Volunteers.Center for Medicare Education Issue Brief. 2001;l(8). Center for Medicare Education. Managing Volunteers.Center for Medicare Education Issue Brief. 2001;1(7). Charon R. The narrative roadto empathy. In: Empathy and the Practice of Med102
PARTTHREE:SELECTED
BIBLIOGRAPHY
103
icine. H Spiro, MG McCrea Curnen, E Peschel, D St. James, eds, New Haven: Yale University Press, 1993, pp. 147-159. Cole TR. The Journey of Life: A Cultural History of Aging in America. Cambridge, UK: Cambridge University Press, 1992. Cole TR, Gadow S, eds. m a t Does It Mean To Grow Old: Reflectionsfrom the Humanities. Durham, NC: Duke University Press, 1986. Coleman PG, Ivani-ChalianC, Robinson M. Self and identity in advanced old age: Validationof theorythroughlongitudinalcase analysis. J Pers 1999;67(5): 819-849. Erikson E. Childhood and Society. New York: Norton, 1950, 1985. Erikson E. Identity: Youth G Crisis. New York: Norton, 1968. Fishman S. Relationships among an older adult's life review, ego integrity, and death anxiety. Int Psychogeriatr 1992;4(Suppl 2):267-277. Gordon DR, Paci E. Disclosure practices and cultural narratives: Understanding SocSciMed concealmentandsilencearoundcancerinTuscany,Italy. 1997;~4(10):1433-1452. Haight BK. Long-termeffects of a structured lifereviewprocess. J Gerontol 1992;47(5):312-315. Haight BK. Reminiscing: The state of the art as a basis for practice. Int J Aging Hum Dev 1991;33(1):1-32. Haight BK, Burnside I. Reminiscence and life review: Conducting the processes. J Gerontol Nurs 1992;18(2):39-42. Haight BK, Burnside I. Reminiscence and life review: Explaining the differences. Arch Psychiatr Nurs 1993;7(2):91-98. Haight BK, Michel Y, Hendrix S. The extended effects of the life review in nurs1- 168. ing home residents.Int J Aging Hum Dev 2000;50(2): 15 Hirsch CR, Mouratoglou VM. Life review of an older adultwith memory diffkulties. IntJ Geriatr Psychiatry 1999;14(4):261-265. Hoshino K. Life-span developmental processes fromthe point of view of the elderly: An examination of vocationallife. Shinrigaku Kenkyu 1999;70(5): 40 1-408. uapanese]. Kaplan M, ed. Intergenerational Programs: Supportfor Children, Youth, andElders in Japan. S U M Series in Japan in Transition. New York: State University of New York Press, 1998. Kegan R. I n Over Our Heads: The MentalDemands of Modern Life. Cambridge, MA: Harvard University Press, 1994. Kegan R. The EvolvingSelJ Problem and Process in HumanDevelopment. Cambridge, MA: Harvard University Press, 1982. Kiibler-Ross E. On Death and Dying. New York: Macmillan Publishing Co., 1969. e CreKuehne VS, ed. Intergenerational Programs: Understanding W a t VHave ated. Binghamton, N Y ' : Haworth Press, Inc., 1999. Lichter I, Mooney J, Boyd M. Biography as therapy. Palliative Med 1993;7(2):133-137. Manheimer R. Generations learning together.J Gerontol SOC Work 1997;28(1-2): 79-91.
PARTTHREE:SELECTED
BIBLIOGRAPHY
iniscing therapy: A CNS intervention. Clin Nurse Specialist 1992; aring the memories. The valueof reminiscence asa research tool. Gerontol Nurs 1992;18(5):13-18. me1 S, eds. Intergenerationa~Programs: Imperatives, StrateTrends. Binghamton, N Y : Haworth Press, 1989. C . An observational studyof intergenerational activities and beadult day carecenters. Int JAgingHum th T, McCrea J, Wilson J. Intergenerational Programs: and F ~ t u r eNew . York: Taylor & Francis, 1997. 'Connor P. Salient themes in the life review of a sample of frail elderly responversus despair.Perspect nd well. Gerontologist 1992;32(2):273-274. er Z, Miller RS. From Age-ingto Sage-ing:A Profound New Vision Older. New York: Warner Books, 1997. ew program on disorientation, social interInt JAging Hum Dev actionandself-esteem of nursinghomeresidents. ff L. Program Innovation in Aging: Volume 8. Commu-
nerational Programming. Washington, DC: National the life review: The social construction of talk about 92;32(1):120-125. . The story of life: Hermeneutic perspectives on the relationnd life history. In:The Narrative Study of Lives.R Josewbury Park, CA:Sage Publications, 1993, pp. 1-20.
This Page Intentionally Left Blank
E D U m O BRUERA, MD
M D . Anderson Cancer Center
Houston, Texas The modern palliative care movement first started in the United Kingdom during ~ ~ a number of hospices were established. This original British movethe 1 9 6 0 when ment soon became an international effort. Physicians, nurses, and other disciplines responded to the unmet needs of terminally ill patients and their familiesby developing alternative settings and modalitiesof care to those provided by conventional health care. The settings usually consisted of houses in d ~ e r e n neighbort hoods away from the main campuses of teaching hospitals. The modalities of care emphasized attentionto detail and nonintervention. The American hospice move~ organized mostly around home care ment, which developed in the 1 9 8 0 ~was nursing programs with minimal intervention by other health care practitioners, including physicians. Soon after the establishment of hospices, some spectacular results were reported. Patients achieved excellent symptom controlwith relatively simple interventions. Both patients and families were able to receive psychosocialsupport effectively from comparatively untrained health care professionals and volunteers. Because of the uncomplicated settings and modalities of care, the cost of care was relatively low. The initial attempts to deliver comprehensive palliative care were of great importance in validating the needs of palliative care patients and their families and in promoting innovation in delivery of care. However, inthe late 1980s and 1 9 9 0 ~ ~ it became clear that such a movement had serious limitations. In most regions of the world, only a minorityof patients, primarily those with cancer, had access to palliative care and those systems. Patients were mostly elderly, fiiancially stable,with good social support, and needing relatively low levels of care, yet even these select patients only accessed palliative care during the last month of life. Patients from minority segmentsof the population, as well as those who were young, suffering from severe psychosocial or physical distress, and with limited financial resources and family support, had limited or no access to palliative care. Even when other populations began to be treated in palliative the ~ clinical results initiallyreported durcare settings inthe late 1980s and 1 9 9 0 ~ ing the 1970s regarding number of home deaths and overall symptom control were not reproduced. 107
108 WORKINGTOWARD AN INTEGRATED MODEL OF PALLIATIVE CARE
During the last five years, mainstream academic health care and health care systems around the world have finally recognized palliative care to be a priority. There have been many more palliative care programs established during the last five years than during the previous 27 years. In addition, the opportunity exists to fully integrate palliative care withinthe context of health care systems and academic institutions. This will secure research and education resources needed to improve the care of the terminally ill. The enormous growth of palliativecare aroundthe world presentsall of uswith number of fundamental challenges: Increased access for patient groups that are currently underserved by palliative care services Seamless integration of palliative care within the continuum of health care services available to patients with cancer and other illnesses The development of reasonable clinical outcomes based on solid evidence
To achieve these goals, both palliative care programs and major health care centers and academic institutions need to modify their structure and function. The geographic and philosophical boundaries must be progressively eliminated so that palliative care can be delivered in acute care facilities, outpatient centers, tertiary palliative care A number of preunits, hospices, and at home. liminary initiatives around the world show that in all these setpalliative care can be delivered tings in a complementary rather than in a competitive way, The transition from life-pro1 to palliative care should not take plac abrupt manner but should be fully incorporated into the care plan of patients who, at the moment of initial diagnosis, have limited chances of cure. This will require traditional medical specialists to adopt pallia-
the terminal period of the illness, a from those in such areas as North
ONGOING CHALLENGES IN WORLDWIDEPALLIATIVECARE
109
making. Funding and administrative arrangements also will needto be tailored to the structure of each health care system. The most successful programs will be those that are capable of ~aintainingthe focus on the individual assessment and management needs of patients and families and are able to reach and effectively relieve physical and psychosocial suffering for the great majority of patients who die with cancer and other chronic devastating illnesses in their communities each year. In this part, Working Toward an Integrated Model of Palliative Care, we spotlight two examples of efforts to implement palliative care across health care treatment settings from acute care to home. Carlos Centeno, MD, PhD, of Salamanca, Spain, describes the recent evolution of palliative care services in his country, where a regional approach spearheaded by several local champions has ledto an impressive growth in the availability of palliative care in several regions, notably Catalonia, and in major cities. In describing how several regions have mobilized to meet the challenge of making palliative care more broadly availableto patients, Dr. Centeno details a range of influences from outside as well as inside Spain. The second Featured Innovation is grounded in one particular U.S. health system, Northwestern Memorial Hospital in Chicago, Illinois. Charles von Gunten, MD, PhD, describes a local, multifaceted palliative care and home hospice program August. that has evolved over the past 20 years and thathe directed until this past In this instance, the editors interviewed not the initial innovators but people who have been central to sustaining innovative practice that was already in motion when they joined these respective efforts, Not surprisingly, these second wave innovators have chosen to focus less on the fine details of the process of starting up an innovative practice and more on the challenges of keeping the programs going. In spite of the entirely distinct health care delivery and care reimbursement systems in place in Spain andthe United States, these two innovators share some common concerns.Both stress the importance of providing palliative care whereverthe patient is and call for creating services for patients in long-term care who are underserved by palliative care services currently in both countries. Interestingly, Dr. Centeno, in his discussion of the development of palliative care services across several regionsof Spain and in the context of a changing national health system, emphasizes the key role of planning in the process of creating a comprehensive system of palliative care. In contrast, Dr. von Gunten emphasizes the importance of individual initiative in both starting and sustaining a systemof palliative care at Northwestern Memorial Hospital.
This Page Intentionally Left Blank
An interview with CARLOSCENTENO, MD, PhD
Los Montalvos Hospital Salamanca, Spain
In this interview with Karen S. Heller, PhD, Carlos Centeno, MD, PbD, an oncologist and a consultant in palliative cure in the Pain Therapy and Palliative MedicineRegionalCenter, Los Montalvos Hospital,Salarnanca, Spain, describes the development ofpalliative care services in Spain since the early 3980s and offers his perspective on the opportunities and challenges that facethe innovators of several models of care in that country, Dr. Centeno and colleagues in the Sociedad EspatZola de Cuidados Paliativos <SECPAL;) are involved in a variety of efforts to build on, expand, and sustain the most promising andeffective aspectsofpalliative care delivery in the context of a changing Spanish health care system.
r:Canyou tell us about how palliative care services were started in Spain? Carlos Centeno: In the early 1 9 8 0 ~there ~ were several physicians working with terminal patients in various parts of Spain who were concerned about how best to treat pain andother symptoms of terminal disease andhow to improve the way care was providedto dying patients. Thesepeople included Dr. Sanz Ortiz, an oncologist from Santander; Dr. Xavier Gornez Batiste, an oncologist, and Dr. Josep Porta, an internist, from Catalonia; Dr. Marcos Gornez Sancho, an anesthesiologist from El Sabinal Hospital of Las Palrnas in the Canary Islands; and Dr. JuanNiiEiez Olarte,aninternistfromHospitalGeneralUniversitarioGregorio MaraEion in Madrid, where many cancer patients were treated. All these physicians were excellent clinicians, very advanced in their fields, and some were university professors. These highly skilled professionals began to look beyondthe borders of Spain to find appropriate models of care. Over the next few years, they made trips to work with palliative care experts in several other countries. Dr. NuEiez Olarte, for example, went to work with Dr. Balfour ~ o u nat t the Royal Victoria Hospital in Montreal, Canada. Dr. Ortiz madea short trip to England to see how hospice worked there. Dr. Gomez Batiste and Dr. Porta also went to England and spent time at the St. Christopher's Hospice in London. Dr. Gomez Sancho went to Milan, Italy, where he worked with Dr. Vittorio
111
112 WORI
Ventafridda. Thus, in just a few years, we had a very complete vision of how palliative care was being conducted in four or five countries around the world. When they returned to Spain, these physicians, working at first independently and alone, founded palliative care units or teams in their own hospitals. Theseindividual initiatives also stimulated actionsby the health authorities, the most important and well-known of which was that in Catalonia, in northeast Spain. Under the leadership of Dr. Gomez Batiste, the Catalonian Palliative Care Planning and Implementation Pilot Program provided an integrated, wide-ranging solution to the problem of incorporatingpalliativecare into the publichealthsystem through a network of home care and hospital-based care. Conducted as a pilot project of the World Health Organization(WHO) from 1990to 1995, this program has influenced the development of palliative medicine throughout Spain and in Europe. : When these physician innovators returned to Spain from their visits abroad and sought to initiate a palliative care program, whatkind of support did they receive?
CC: It was very different for each of them. For example, in Santander, Dr. Ortiz
worked totally alone, without any support from the government health authorities, for 15 years, Dr. Nufiez Olarte had very good support from the director of his center, and Dr. Gomez Sancho had good support not only from his hospital, but also from the regional health authorities of the Canary Islands. Dr. Gomez Batiste had the support of the regional authorities of health, as well as the sponsorship of the WHO. Part of the difference in the kind of support these physicians received for their work has to da with the fact that the health care system in Spain is becoming decentralized. We have different regional health systems in, for example, Catalonia, Galicia, and the Canary Islands, but in other places, we still have the old centralized, national health system,which is called INSALUD. I think that when there is a regional system,when the authorities feel close to the patients andto the health care professionals in their own region, theymay feel closer to the problems and more committedto resolving them. In that situation,one can beginto work more quickly than when one is working under the old national health system. For example, Dr. Ortiz’s program in Santander,which is under the national system, remains smaller and less well supported in comparison with others that are being developed under a regional system. In Catalonia, by contrast, we have a very complete system of palliative care, with home care teams, support teams, hospital teams, and palliative care units. In 1998, a Regional Program of Palliative Medicine was approved in Castilla y Leon, which is a very large region. This program features the use of telemedicine techniques in training, providing information, and clinical support for palliative care teams workingwith dying patients. Planning measures have been adopted in Valencia and in the Canary Islands, where in 1998 a strategy was designed to extend the work of the palliative care center set up by Dr. Gomez Sancho at the El Sabinal Hospitalto the rest of the Islands. These innovations have taken place pri-
PALLIATIVE CARE IN SPAIN: AN EVOLVINGMODEL
173
marily in regions where the health system has been decentralized.IN central national health administration, has adopted only some local initiatives in Madrid, the capital of Spain. Thus, palliative medicine in Spain has evolved from the personal efforts of several innovators working independently and has not resulted from any government planning or special financing inthe majority of cases. : Khat ~ e v e l o p ~ e nfollowed ts these first personal efforts of i n ~ i v i d ~ a l physicians in various parts of Spain?
CC: These first steps by individual innovators were followed by the creation of the Sociedad Espaiiola de Cuidados Paliativos (SECPAL) in 1992. This organization has spreadthe philosophy of palliative care throughout Spain and has cont~bL~ted to education and research in palliative care. SECPAL has close to 1000 members from different specialties, including medicine, nursing, psychology, physical therapy, religion, and other fields. The society publishes a journal, Medicina Paliativa and, for the past two years, an annualDirectory of ~alliutiveCare ~ r o g r a ~ s . It has sponsoredtwo National Congresses and conducted many training activities in palliative care in different parts of the country. In meetings with the Ministry of Health, SECPAL” has contributed to the development of new rules for preon trainin scribing opioids and narcotics. The organization is working and program organization and plansto publish r e c o ~ e n d a t i o n sfor health care authorities on the training and organizationof palliative care teams. To me, the most impressive rolethe association performs is that every year, the founding physicians,who were the original innovatorsin palliative care, andot ers travel to many places in Spainto speak about palliative careto physicians an nurses and to recruit new people into the field. At the same time thatSECPAL was being formed,two private o Spanish Association Against Cancer(AECC) and the Order of Ho Saint John of God (Orden de 10s Hermanos Hospitalarios de San Juan de Dios), also were pioneering in the field of palliative care in Spain. In 1991, the AECC, a private charity, launched its first mobile home care unit for terminal cancer patients, a model that extended palliative medicine to many provinces in the country. They were influenced to do this by Maria Miranda, a nurse who trained in hospice carein England. Dr. Pablo Sastre isnow the coordinator of this effort and has extended the home care teams. The teams consist of doctors, nurses, and drivers to transport them to patients’ homes (becauseit is very difficultto find parking in Spanish cities). The teams also have the support of psychologists, who generally do not go out with the team but are available as needed. The teams always work with the family physician and are beginning to work with the support of a hospital-based service as well. Today,there are nearly 40 AECC mobile palliativ~ care teams providing careto terminal cancer patientsat home. Their workis supported through a campaign known asthe “day of the little flag,”when a big col-
*For more information, visit SECPAL’s w-ebsite (m.secpal.com).
114 WORKING TOWARD AN
INTEGRATED MODEL OF PALLIATIVE CARE
lection of donations is held in Spanish cities. We call it that because when you give a donation, you are given a little flag. The other organization, the Order of Hospital Brothers of Saint John of God, ill paprovides care for patients with chronic degenerative diseases and terminally tients in its hospitals. In 1991, the first palliative care unit was established at St. John’sHospital in Pamplona through agreements with the health authoritiesthere. Now 10 to 12 such units provide medium or long-stay hospital care for dying patients in Spain under the auspices of this Order. In 1998, there were 143 palliative care teams of various kinds working in Spain. These programs are of three main types: integrated systems (as in Gatalonia), programs for hospitalized patients, and programs providing care for patients at home. Based on a coupleof recent national studies, one can conclude that at least25 percent of the 80,000 people who die of cancer each year in Spain now receive care in the final stages of life from some sort of palliative care team. ~
:Is there any kind of home cure supported by the public health system for terminally ill patients without cancer?
GC: In the old national system, they are beginning to support palliative care teams at home, not only for terminal patients, but also for chronic patients, for example, those with diabetes or bleeding or respiratory problems. These teams are very new. In all of Spain, there are probably 10 or 15 teams under the national health system, but their focus is homecare, not terminal care. These began the year before last as an experiment, but now I think that the national system is beginning to expand these kind of teams throughout the territory where INSALUD remains in place. So far as the health authorities are concerned, it is a successful approach because with one team they have founda solution for three or four problems-the problem of very full hospitals and not enough beds, the problem of treating patients with diabetes andother chronic diseases, andthe problem of caring for terwe need minal patients. I don’t know if is a very good solution, however, because very well trained doctors and nursesto care for terminally ill patients. Caring for the dying is not the same as caring for someone with diabetes or other chronic diseases. It is a specialty. Similarly, as a specialist in palliative care, I don’t know if I would be as effective in treating people with all kinds of chronic diseases. I think that the best approach is not to combine the different forms of care in one team;palliativecareshouldbe kept separate. However, it is too soon to say whether these teams are a good design for caring for terminal patients, among others.
PALLIATIVE CARE IN SPAIN: AN EVOLVING MODEL 115
KSH: The integrated model of care undertaken in Catalonia has been very suc-
cessful and widely copied in Spain and elsewhere. IVhat can you tell us about their approach? CC: In Catalonia, the palliative care program has three components: home care teams, acute hospital teams or an acute hospital unitwith palliative care beds, and beds in long-term care facilities, which we call social sanitary environments. My impression is that we now have in Catalonia probably the best program in Europe. This program cares for more than60 percent of cancer patients in that region. I t W that the principal factors accountingthe forsuccess of the Catalonian model have been the support from both the regional health authorities and theWHO and the very good design that Dr. Gomez Batiste put on the table. He began to t W about how to provide palliative care in Spain based on his observations of how palliative care was delivered in England. He sawthe problems in England arising from having hospice outside the national system of health and the problems in fmancing hospice care, so he thought that in Spain, we needed one plan from the health authorities that would provide an integrated net of palliative care services, from top to bottom, and across the settings in which care is provided. A key diEerence between the Catalonian model and that of other places, Ithink, is that the kind and array of palliative care services offered derive from a plan based on an assessmentof what kind of care is needed-including what kind and how many physicians, what kind and how many teams, how many palliative care of services beds, and so forth. Another difference is that having an integrated net helps to resolve the problems of coordination and continuity of patient care across settings. In Spain, we have an excellent health system but one that is organized more in terms of structure than function, which makes coordination and continuity of care more difficult. Community-based health services are under the direction of one authority, and specialized care in hospitals is under another authority. Often,there is little communication between hospital-based care providers and family physicians inthe community. For example, one of my patients in my unit here in Salamanca, lives in a little that village. village about 30 kilometers fromthe city. One family physician serves When my patient was discharged fromthe hospital to home, I checked my book for the phone number of this doctor because my patient would be at home for probably two or three weeks and then would return to my unit. When I called it was the first time the family physician,he was very, very surprised and told me in all his experience working in that village that a doctor from the hospital had called him about a patient. :Based on the Spanish experience over the past several years, what advice would you give people who wantto set up a palliative care servicesomewhere in the United States, for example?
CC: First, Spain is a country of 40 million people who share a common culture, religion, and family traditions,so it is difficult to generalize from our experience
116 WORKING TOWARD AN
INTEGRATED MODEL OF PALLIATIVE CARE
to a more diverse social setting. Also, in Spain, all medical care, including palliative care, is paid for underthe national or regional health system,with the option to add private fee-for-service care, if you prefer. This includes home care as well as hospital care. In the United States, palliative care services are not necessarily overnment or private insurance,or there is difficulty in defmingthe care in such a way that it will be covered. In my view, palliative care is a right, other kind of medicalcare. and therefore itis obligatory thatit be paid for like any Even with the differences between our countries, I think that our experience might be helpfiul. For example, we found that in order to develop palliative care quickly, you haveto have physicians working in this field at the very highest levels. You need doctorswith very good training. I think that this is a problem in countries like the United States,where much of palliative care is provided by nurses, and for that reason, physicians may see it not as part of medicine but, rather, as a second level of care. It is important to communicate to physicians that palliative care is a medical specialty that requires excellent training and the interest and support of physicians to be done well.
this time, if someone needs palliative care anyplace ;In Spain, can he or she get it^ :At
toward that. It is not possible in all of the regions of the have many places with difficulties. It is prima~lyavailable le. We are now treating 20 to 25 percent of patients with tages of disease, but another 80 percent do not receive palliative care because palliative care is not yet incorporated into the national sysor the regional system throughout the country. Unlike the United Kingdom pain does not yet have a national plan of palliative care. There are rey Le6n. In the rest of the country, in Catalonia, Valencia, and Castilla we have little teams in many places, but no national or regional plans.
at is the greatest area of challenge right now in Spain, as you move for war^^ : I think that we have several pressing problems. The first one is for the national authoritiesto take a position about a single planor design of palliative care le. We need the intervention of the national authorities,as the first step for the future, to make palliative care services accessible to everyone throughout the country. Another important problemis to increase the credibility of palliative care within the health care environment. We are not yet well recognized as a specialty, and the importance and value of this field are not yet well understood everywhere.
PALLIATIVE CARE IN SPAIN: A N EVOLVING MODEL
117
Third, we need to do more advanced scientific research in palliative care. In Spain, we are providing palliative care now to nearly 20,000 people, enough to conduct sound statistical researchon a varietyof aspects of care, for example,different systems of delivering medication. Finally, I think that we need more university professors to provide training in palliative care.At present, we have only a handful of palliativecare experts working in the university. For more credibility, we need more professors to provide better training to future physicians. Because many of the dying will be cared for by family physicians and nurses in general practice, we need all physicians and nurses throughout the country to h o w how to care for dying patients. In Spain,we have very good acute care hospitals, whether national hospitalsor university hospitals, with highly skilled teams and specialistswith excellent training. But we haven’t many medium or long-term care facilities for chronic patients. Many times, a patient does not need to be in an acute care hospital but, rather, We could be better cared for in a place like a hospice or a long-term care facility. need more beds of this kind in orderto expand and develop palliative care more quickly. We are beginningto build this other kind of hospital in Spain,but we do not yet have enough. In addition,we are working inmy city and inothers on improving communicationbetween the hospital and community physicians, and coordinating care among allthe areas. Palliative care is growing throughout Spain. Every year there are 10 more palliative care teams started. I think that palliative care is impossible to stop now in Spain because the people know that it is useful. For example, the Organizacion de Consumidoresy Usuarios, which is the most important consumer organization in Europe, is undertaking a public survey about palliative care and euthanasia in five countries, Belgium, France, Italy, Portugal, and Spain. People may see that palliative care is a useful alternativeto euthanasia. They may recognize it as the better solution to the problems experienced by patients who are dying in pain. REFERENCE 1. Gomez X, Fonals M, Roca J, Borras JM, Viladiu P, Stjemsward J, Nus E. Catalonia WHO demonstration project on palliative care implementation 1990- 1995: Results in 1995. J Puin Symptom Munugement 1996;12(2):73-78.
This Page Intentionally Left Blank
An. interview with C
RLES VON GUNTEN,
San Diego Hospice San Diego, California
Charles von Gunten, MD, PhD, FACPserved as Medical Director ofthe Palliative Care and Home Hospice Program at Northwestern Memorial Hospital in Chicago, Illinois,from I 9 9 3 until the summer of 1999. I n this interview with Anna L. Romer, EdD, Dr. von Gunten reviews the history of this mult~acetedprogra~, comments on how it has remained financial^ viable, and offers his thoughts on key elementsfor other clinicians and administrators to consider when adapting or designing palliative care and hospice programs in their own institutions. na
er: How do you define palliative care?
n t Palliative ~ ~ care is interdisciplina~care that focuses onthe I like that simple def~itionberelief of suffering and improving quality of life. cause it leads to a host of manifestations of how you actually operationalize it. You notice in that definition that it doesn’t say anything abouthow long you have left to live or whether you are terminally ill, whatever that means. It is simply focusing on relief of suffering and improving quality of life. We know from the work of Dame Cicely Saunders and Eric Cassell, amongothers over the last 25 years, that people do not suffer in isolation. They suffer in a constellation with their families, so when you define palliative care as relieving suffering, patients and families have to be the unit of care. Of course, that’swhat hospiceisallabout,andin DameCicely’s words, “palliative care grew out of and includes hospicecare. But palliative care extends beyond hospice. Dame Cicely defines suffering as having fourcomponents:physical,psychological, If palliativecareis social,andspiritual. aboutrelievingsufferingandimproving ”
119
120 WORKING TOWARD AN
INTEGRATED MODEL OF PALLIATIVE CARE
quality of life, it meanswe have to look at people and their families in those four dimensions. We know that in orderto meet patients’ and families’ needs in those four dimensions, it is bestto have a team approach.No one person-one doctor, one nurse, one social worker-can meet someone’s needs in all four dimensions. That short definition-relieving suffering and improving quality of life-sums up in a neat, tight way those other aspects. Further conceptual development-and this idea was first advocated by the Canadian Health System andnow has been taken up by the World Health Organization (WHO)-is that relieving suffering and improving quality of life are not things that should happen just at the end of life. The relief of suffering andattention to quality of life need to be appropriately integrated across a spectrum of illness and the life span. Therefore, that is the intellectual, conceptual framework that I think needs to drive the development of palliative care, which in the United States includes hospice care. AJJk
Can you say a little more about yourchoice of the term ‘tpalliative care” over “hospice?” CVG: The word“hospice”has different meanings in different countries. In French-
speaking countries, it is a public house for the destitute ill. In England, it is primarily a place. In the United States, it’s a Medicare-funded benefit with a set of regulations that determine who has access to it. Each of these definitions gives somewhat perverse distortions, and that is what I think was so nice about coining the term “palliative care,” as it gave us another term to use to talk about the fundamental conceptual framework. We can develop service models and reimbursement mechanisms, but we strongly need to look at what we”re doing and why we’re doing those activities without thinking about service models first. Then we can turn to, “How arewe going to be able to make this kind of care available to people?” : Can you talk about yourexperience with Northwestern Memorial Hospital (NMH] in Chicago? Were you there during the whole design implementation of the three distinct elements of its hospice and palliative care program?
CVG: No, I was not there at the beginning. I was introduced to the service in
1989, when I did a rotation as a resident, andthen I worked inthe program as a just happen. fellow. I think that isa key message: this innovative program did not Charles von Gunten didn’t just sit down and say, “Well, we’re going to do this.” It really began in 1980 and developed slowly over the intervening 20 years. I became medical director in 1993. The Palliative Care Program developed first as a home hospice program before the Medicare hospice benefit was created to reimburse hospice in 1982. So, it started as a home-support team. The reason theydidn’t use the word “hospice” is because the medical staff would not permit it. They didn’t want to have a service for the dying. It was called “supportive care” and was modeled after what
DESIGNING A N D SUSTAINING A PALLIATIVE CARE PROGRAM 1
we now recognize as home hospice, with nurses, social workers, c physicians making home visits. It was a service for terminally illpe :How did
the i n ~ a t i ~acute n t ~ a l l i a ~ i care v e unit evolve?
:There was a recognized need. There are people at ho home hospicelike program, eeded to be admitted to riety of reasons. In the begi of the hospital, but, as most people have recognized, the care of a very sick population the at end of life are not In part thanks to a and in part because there wa the hospital to a icians at NMH began g a ward of portive care home program.In 1987, NMH started a vide consistency and continuity of care from the ha setting, With the development of the inpatient palliative c home could come in and out of the hospital as enced the development of the inpati fering fromAIDS, young people with a devastating illnesswhich at that time was characterized by needing frequent admissions, comprised 25 percent of the atients we were caring for at that time. I think that led the leaders of th to think about such questions as: What do these patients and their families ne in terms of support, including medicalsupport? This population challe of the rigid ideas that had developed within standard hospice abou would and would not do in a care program at the end of - t r a ~ s ~ s i o ~ans, tibiotics, antivirals, operations, procedures, that kind of thi I think it is very important that we consider what will relieve su improve quality of life for this particular individual and his or her family is not just biological; the family is whoever the patient says it is. These patients and families unsettled old assum~tionsand definitions ab care and led to the development of a flexible approach that is on patient and family. Some of the serendipity was that in cre tient, acute care unit, they avoided anyreimbursement barriers t a program. : Can you
say a little more about the reimburse~ent?
CVG: For a patient covered under commercial insurance, reim~~~rsement to a hos-
pital now is on the order of $1200 a day. The general inpatient reimbursement for a patient with hospice is $450 a day. That is a huge difference. bursed at this higher level permits one to focus only on the patie and say, “What is in their best interest?”and “Who needs this care another ward in the hospital, like anyother specialty unit. If you have a heart attack, you go to the coronary care unit. If you have severe pain and quality of life issues, you go to the palliative care unit.
122 WORKING TOWARD AN
:And
INTEGRATED MODEL OF PALLIATIVE CARE
the billing codes?
CVG: There is no distinction in the billing codes. The billing code is just for standard inpatient care. You need to meet the criteria for being an inpatient in the hospital. The whole reason thatwe have developed specialty units in hospitals is the general recognition that people do well what they do all the time. You assemble a skilled groupof professionals who are highly educated, working around a common goal, put them in a unit in a hospital, and you admitthe appropriate kind of patients to that specialty unit, andthe patients getbetter care. That isthe case with coronary care units, medical intensive care units, spinal cord units, and so forth. : Was there an
education or persuasion process that bad to occur to make
this happen?
: How did the palliative care consultation team f i t in with these existing pieces?
CVG: I think there were two reasons for the fit. The first was that within hospice and palliative care, we had developed very powerful approaches to care for patients: symptom control, cornmunication skills, planning for the future, helping families cope. Why would you make that available only to people who are in the
DESIGNING AND SUSTAINING APALLIATIVE CARE PROGRAM 123
system on the unit or in the home care program? The analogy is, you can fmd a cardiologist in more than justthe coronary care unitor the catheter laboratory. If you have a heart problem and you want a heart specialist to give you advice, you call a heart specialist; he’ll come see you. It isthe same idea in palliative care. If there are patients for whom there is unrelieved suffering or poor quality of life and you want to make it better, you ask people who have expertise in this to come and consult. The second reason for developingthe palliative care consultation team was as an educational tool. Doctors at all levels learn best at the bedside. Bringing expertise in palliative care in tandem with education is very powerful. Our residents, fellows, and medical students describe some of their best education occurringon the consultation service. : Was the
consultation team multidisciplinary?
CVG: The core members of the team are adoctor and a nurse, and they draw on
social work and chaplaincyas they are needed. :How
did you pay for these additional services?
~ The ~ physician : can bill on a fee-for-service basis for consultation services in this area. The nurse is supported by the budget of the inpatient palliative care unit. C
: W e n you did these things, were other hospitals simultaneously doing them?
CVG: The Cleveland Clinic had a similar program, run by Declan Walsh,MD, for a long time. When I visited in England and observed what they were doing, I
found that they are ahead of us in so much of palliative care. : W e r e did
you go in England?
:St. Christopher’s Hospice and St. Thomas’ Hospital in London, theand Royal Marsden Hospital in London Surrey. The Royal Marsden is a premier cancer institution in England. Each was doing things slightly differently, andit really gave me great ideas. Also, Dr. Walsh was very helpful. : Were you able to model your reimbursement system on the Cleveland Clinic? Were they using a similar system? :Absolutely.
Dr. Walsh and colleagues published an article that demonstrated a strong financialpicture.l They did not publishthe actual numbers, whereaswe did in our report because I felt that was important at the time.2 Our systems differ, in thatthe Cleveland Clinic isa closed staff model system, which is rare. There are a fewothers, such as the Mayo Clinic, but very few places are like that. North-
WORKING TOWARD AN INTEGRATED MODEL OF PALLIATIVE CARE
western, by contrast, is a private hospital. Only half the doctors are full-time faculty at Northwestern University Medical School, and the rest are in private practice. If you can adapt an integrated system for offering palliative careto patients in a more mainstream setting,it demonstrates that it is possible to offer this kind of care in many settings and have it be financially viable. What it shows is that concept is robust enough to be developed in multiple places.
at are some of the key t a k e - b o ~ messages e based on your experience? ere are some impo~antmessages for anyone getting started. Each indiins in a unique place, with a unique history and a unique set e, and you start with what you’ve got. The second impo~antmessa ce. You have to have this strong vision and work at it persistently over some serendipity and a lotof perseverance by a small group of initted people, we built an effective program over time. Also, reember: It’s better to beg forgiveness than to ask permission. When you begin, you just start doingit. It is not as though there were a giant committee in the hosital, which said, “Should we have this inpatient hospice unit inthe hospital?” : ~~t
are the other barriers to initiating palliative care across a variety
of settin~s?
that inhibitspeople is that the Medicare hospice benefit has domcare in this country, People think, “Well that’s the only way that an fund care forpeople at the end of life.” That is simply nottrue. It is one way. The strengthof the Northwestern model isto say, “This isthe care we want to deliver. Now, what arethe revenue streamswe can access inorder to fund it?” ere are multiple revenue streams that are used. The home hospice piece is now edicare hospice, but it is important to thinkmorebroadlyabouttreatment choices than just what the Medicare hospice benefit allows. U ~ o ~ u n a t e lsome y, in the hospice communi^ perceive this as a threat, when in fact, it represents the triumph of hospice. Hospice has succeeded in convincing the rest of the world that this is good medical care.We are saying that this good medical care needsto be rooted inall of the institutions in which patients are cared for. These principles need to go forward. y e can do palliative care in the ICU, we can do palliativecarein the generalmedical ward, we can do it in am~ulatoryoutpatient clinic, andwe can do it in someone’s home.
t
: One of the concerns that I”ve heard from people working in hospice is ~some ~ ot r ~ ~ n ~ ~ a tmight i o n sscrimp on what they would oger if they were
DESIGNING AND SUSTAINING APALLIATIVE CARE PROGRAM 125
not required to provide the full hospice benefit-that palliative care may just be a way to offer watered-down hospice and save money. CVG. It is an issue. Everyone needsto be financially responsible so that programs are healthy, but I have trouble understanding the idea of needing to scrimp. The point is to be more generous, not to scrimp. Our goal should beto make this kind of care available to more people. : Can the inpatient palliativecare unit bill for the services it provides because it doesn’t have the financial ceiling of the Medicare Hospice Benefit?
CVG: There is that. However, having an inpatient palliative care unit is but one
element of an effective palliative care program. : What are
the areas where you see a need for improvement?
CVCk I do not see the Northwestern system as complete. The ambulatory outpatient clinic needsto develop further, and the consultation service could expandseeing people who are at home but who are not able to be cared for by a home hospice program for a variety of reasons. We are not involved in skilled nursing facilities; we do not see patients in long-term care. All of those elements needto be added. : You have written about difficulties that staff working on the acute care unit have had with utilizationreview boards. You have suggested that national policy changes in palliative care would help. Can you say a bit more?
WG: This is a national issue. Third party payers are interested in limiting cost. In
the absence of any national standards for what is appropriate inpatient palliative care, meaning in an acute hospital setting, it’s not surprising that insurers make So the reimbursement process endsup being exceedingly up their own standards. individualized. Now again, inthe absence of any national standards, utilization review boards and third party payers look to what they do h o w about. They do so if h o w about what hospice care is, and we say, “Relieve suffering, improve quality of life,” they respond, “Isn’t that hospice care? Shouldn’t we pay X dollars?Inmy book here, this isthe hospice rate.” It’s not that these are bad people. It’s that in the absence of guidance, theyturn to what they know. On a national basis, we have not described standards for the resource-intense care of patients in acute hospital settings, where the primary goal is relief of suffering and improving quality of life. We may use more resources than other places, but
126 WORKINGTOWARD AN INTEGRATED MODEL OF PALLIATIVE CARE
because it has never been described in the current book, the case manager is scrambling to just* our use of resources to the utilization review board. There are some odd things that have come out of that. I’m aware that as soon as a patient has a do not resuscitate (DNR) status, some insurers take thatas evidence that the patient no longer needsto be in the hospital. It’s outrageous, outut these arethe kind of policy decisions that emergewhen there is no standard. People have to fill it in on their own. :It
sounds as though one of the things you are callingfor would be something similar to, but even more detailed than, the Canadian palliative care standards.3 CVG: Absolutely. Appropriate palliative care in a hospital should be reimbursed
as hospital care, We should not haveto fight for it-it is good care. m a t is good palliative care at home? m a t should hospices be doing, and what should they reasonably be paid for? Noneof this is being dealtwith on that level in this country right now. : To it~ustratethe differences between both costs and care on the general wards and on the inpatientpatliative care unit, could you create a hypothetical patient and follow thatperson in the two settings? Explain how the costs and treatment choices differ. :Let’s saythere’s a patient inthe hospital with metastatic breast cancer. The patient is admitted to the hospital through the emergency department for a decrease in mental status and bone pain. The patient is then admitted to a general hospital ward, where hypercalcemia and bone metastasis are diagnosed, and pain medication is begun. Traditionally, not much is addressed with regard to advanced directives or overall goals. The standard operating mode in the emergency department, as it should be, is “life at all costs,’’ ruleout everything bad. So, the patient will have a head CT, probably a brain MRI, x-rays of all of her bones, and extensive bloodwork, because, “Gee,she came to the emergency department, so we’re going to do everything.” Then she goes to the general hospital ward,where she will have her blood drawn every day. That is fairly standard the in hospital; a complete blood count is drawn every day.She will also have an SAM-20 (a chemistry panel) every day.If she coughs, she’ll get achest x-ray. ;
at would be different if she moves to the acute palliative care unit?
: When the palliative care team is consulted,we sit down and have a family meeting. Therewe establish thatthe primary goals areto relieve suffering and improve quality of life. Thepatient is still groggy,there is still poor paincontrol, the husband can’t cope, the children are inan uproar, and the patient can’t go home safely. So, she’s moved to the inpatient palliative care unit. The kinds of things that distingLlish inpatient palliative care fromother units inthe hospital are basic. Anything is available. You can do any test, but first you ask the question, “Why?
DESIGNING AND SUSTAINING A PALLIATIVE CARE PROGRAM 127
Why should we do this test? m a t will it tell us that will help us relieve this patient’s suffering or improve her quality of life?” That is a key question that everyone asks themselves before they do anything on the palliative care unit. That is not a question thatis asked in the general hospital setting. When this patientsdfering from metastatic breast cancer comes onto the acute palliative care unit, there is no reason to draw blood every day. If anything, it makes her quality of life worse. m o wants to be awakened at 5:00 inthe morning and have their arm poked for data thatreally is not used to change anything? So, the routine blood testing stops. Again, if the person has a cough, the patient will be examined. Will a chest x-ray change what we are doing? Will it help us make her feel better, improve her quality of life?If she needs achest x-ray, she’ll get one, but she’s not going to get a chest x-ray just because, “She had a cough, and, of course, we have to do a chest x-ray for everycough.” It is that change in mindset that leads to a decrease in the charges because every time the patient says she is short of breath, we’re not going to put on a continuous pulse oximetry. It is not going to help us. Furthermore, we found that, on average, charges decrease by 50 percent when patients are on the palliative care unit. :Does
that decrease in charges translate into lost revenue for the hospital?
: It
depends on the reimbursement system. Under Medicare, it does not matter how much you spend, you get a set amount determined by the Diagnosis Related Group (DRG). Some commercial payers pay by a discount, so, let’s say the hospital charges $100 for a chest x-ray-withthe contract, the commercial payer will pay you $50. The more tests youdo, the hospital will still get more revenue, though at a discount. In Chicago, a large percentage of the payers pay by a negotiated per diem. So, we’ll say the insurer pays (this is a made-up number) $1200 a day for every patient because theyh o w , on average, that is what it is going to cost. They do not carewhat you are doing. They care how many days the patient is in the hospital, and beyond that you can do what you want. In that case, doing less-fewer tests-saves the hospital money because they are still getting the same per diem. The point is that decreasing charges per day actually can be in the hospital’s best interest. It somewhat depends-because the hospital also has fixed costs associated with doing tests-whether or not a particular test is ordered. You have to have a technician to run the blood samples; you haveto have the machines to do the x-rays. :How doesstaffing on the inpatientpalliative care unit compare with other units in the hospital?
CVG: This is important. Althoughthe charges are lower, the amount of staff time with patients, if anything, is increased. The staffing ratios are a little higher than
they are elsewhere inthe hospital. The things that patients report as d3erent in this unit from elsewhere are also revealing. They never remarkon the decor. They say the quality of care is either
I28 WORKINGTOWARD AN INTEGRATED MODEL OF PALLIATIVE CARE
the same or better than it was elsewhere in the hospital. They say, “It’sthe first orm mat ion. People talkto me, tell mewhat’s place where I feel like I had enough going on, and help me.” Families say, “It’sthe first place in the hospital where it seemed like we were important.” That is not a product of architecture or space or pretty carpets or all that homelike stuff with which we get so involved. It’s sta~-driven, that is, personnelhaving patient-centered and family-centered care as a clear goal and spendingthe time they need to spend. :Besides
having three settings acrosswhich you can care for patients’ palliative care needs, do you do anything else to improve continuity of care for patients and families? CVG: Remember, Northwestern is a private hospital, and there is a strong sense
of “the patient’s doctor is the patient’s doctor.” The whole pointof the staff is to help support that relationship and focus a lot on communication among one another. Because the doctor cannot be there all the time, the staff have to be able to give family the information they need andhelp them draw those connections. So, the night nurses h o w what the plan is; they knowwhat’s going on because somebody has toldthem what’s going on. At change of shift, it is not just, “Well, blood pressure output and the ISJs running,” it is, “Well, so-and-so’s familyis expected, and so-and-so is coming in. Thedoctor was in this morning, and did this they come in tonight, and this and this, and described this and this and this,if and be prepared, this is what is going on.” That kind of communication goes a long way toward patients and families feelingthere is continuity. : You have mentioned several times that Northwestern Memorial is a private hospital and you have stressed its patient-centered mission. Wouldyou say those are the two main features that allow this kind of care to flourish?
CVG: No, it can happen anywhere where there is a commitment to quality care. Northwestern is famous nationally because it has one of the strongest bottom lines
anywhere in the country. It is not that they’re so mission driven that they don’t spend time looking at the bottom line. They are very healthy financially. What I’m talking about are fundamentals. These are fundamental things that can be present at any hospital in the country, but they have to be valued.
noted in one of your articles that opening the inpatient palliative care unit in 1987 with just 10 beds initially, resulted in almost doubling the number of patients and families who could be served by the program. m y was that so? : You
:The whole inpatient unitis acute care. Things need to be changing, or patients need to move on. Sixty percent of the patients who were admitted to the unit died on the unit, and the average length of stay was six days. Seventy-five percent of the patients who come to the unit are transferred from elsewhere in the hospital. These are patientswho never would have survivedto go home to a
DESIGNING A N D SUSTAINING A PALLIATIVE CARE PROGRAM 129
home hospice program. They would have been cared fortheongeneral wardsof the hospital by staff with no special training in palliative care. Here is an anecdote.A young man with very advanced A D S came onto the inpatient unit because his insurer only covered one of the for-profit hospices inthe city. A member of the hospice stdf saw him and his mother at home and said, “Well, if you come on the hospice program, the only medications you’ll lorazepam and morphine. That’s it. If you don’t want that, you don’t want hospice.” ets played out in too any hospices in this country. This well overall. He was on antiretrovirals, he was on suppres e hadrecurrent pneumothor~,in which both lun lapse and he’d be terribly short of breath. He was cared for under home health but occasionally would be read~ittedto our inpatient unit. Under standard hospice, he could not have done that. So, that is where the doubling in th comes from. It is opening thisdoor to people who may not fit the parameters of the Medicare hospice benefit but who need palliative care. : Can you c o ~ ~ eon n tthe change in location of ~ e a t h s~ i t h i n the hospital since the inception of the inpatient pal~iativecare unit?
WG: Since its inception, we have seen a decrease in the number of deaths in the general medical wards. Initially, 40 percent of deaths werein general inpatient wards and 25 percent in the palliative care unit. Now those numbers have flipped, with about 38 percent of all deaths in the hospital occurring inthe palliative care unit, :Is
this a sign of better e n ~ - o care? ~ ~ ~ e
~ You G could : argue, “Shouldn’t this be ableto be done anywhere in the hospital?” But talk, to anyone who works for the hospital, and they will tell you it does not happen. That is a potential downsideof the unit. A lot of people come ~
through, a lot of people die there, and some people are there for short periods and go home. You do not want the reputation as the death house. Yet, if one is going to die in the hospital, the kind of care provided onthe unit is more closely associated with what most people would like than on any other unit in the hospital. There is an interesting outcome of this. Northwestern just built a brand new hospital, and many of the aspects of the inpatient palliative care unit in the old building-the large, private rooms, homelike places for familyto stay overnightare now throughout the entire new, 500-bed hospital. All the rooms are private and large) so that multiple family members can be there, and all have a sofa that can be pulled out into a bed. This is taking palliative care principles and making them available in bricks and mortarto everybody who comes intothe institution. That’s terrific! The hospital has advertised, and they have seen a 20 percent increase in admissions since they opened the new building. Again, it shows a commitment to the patient experience as a whole, and there is an acute palliative care unit in the new building.
WORKING TOWARD A N INTEGRATED MODEL OF PALLIATIVE CARE : Could you
say a litt~ebit about whatyou are currently doing?
: Well, I have moved to the Center for Palliative Studies at San Diego Hospice, with a goal of building an educational framework that will produce skilled country. There is a broad need for physicians who have conin this area. Hospitals want someonewho really knows how to care on a consultant level. : Is your program just fortraining physicians, or, as you mentioned the e approach, are you also training nurses and otherpalimportance of t ~ team l i ~ t i v ecare t ~ a m members?
have nurses as well as social work and chaplainstudents, but my main focus is ~ o i n gto be physicians, which is not to diminish the importance of the others. This is a hospice. The whole team is part of the air you breathe; everybody participates. : We
: In
co~clusion, what ~houghts would you like to leave with readers?
Walsh D, Gombeski VVR Jr., Goldstein P, HayesD, Armour M. Managing a palliative oncologyprogram: The role of a businessplan. J Pain Symptom Management 19943:109-118. von Gunten CF, Martinez J. A program of hospice and palliative care in a private, nonprofit U.S. teaching hospital.J Palliative Med 1998;1:265-276. Ferris FD, ~ummingsI, eds. Palliative Care: Towards a Consensus in Standardized P~incz~les of Practice. Ottawa, Ontario: Canadian Palliative Care Association, 1995.
Centeno C. Panoramaactual de lamedicinapaliativa en Espaiia. Oncologia 1995;18(4):173-183. Centeno C, Amillas P, Lopez-Lara F, eds. Directorio de Cuidados Paliativos, Espan"a. Valladolid: Sociedad Espaiiola de Cuidados Paliativos (SECPAL), 1998. Centeno C, Bruera E. Us0 apropiado de opioides y neurotoxicidad. Med Paliativa 1999;6(1):11-24. Centeno C, Gomez Sancho M. Programas de cuidados paliativos en Espaiia. Una realidad en auge. Datos del directorioSECPAL de cuidados paliativos 1997.Med Paliativa 1997;4(3):108-118. Centeno C, Gomez Sancho M. Spanish Directory of Palliative Care Programmes. Development of a project of the Spanish Society of Palliative Care (SECPAL). Presented atthe Fifth Congress of the European Association for Palliative Care, September 10-13, 1997. London Rook of Abstracts, P-220 (S78). Centeno C, Lopez-Lara F, Gomez SanchoM. Palliative care programmes in Spain: A rising reality. Presented at the Fifth Congress of the European Association for Palliative Care, September 10-13, 1997. London Book of Abstracts, P-221 (S78).
Centeno C, Nriiiez Olarte JM. Questioning diagnosis disclosure in terminal cancer PaZZiativeMed patients: A prospective study evaluating patients' responses. 1994;8:39-44. Kellar N, Martinez J, Finis N, Bolger A, von Gunten CF. Characterization of an acute inpatient hospice palliative care unit in a U.S. teaching hospital.J Nurs Admin 1996;26(3): 16-20. Ng K, von Gunten CF. Symptoms and attitudes in 100 consecutive patients admitted to an acute hospice/palliative care unit.J Pain Symptom Management 1998;16(5):307-316. Nuiiez Olarte JM, Centeno C, Truth-telling: A Hispanic perspective. In: Topics in Palliative Care. Vol. 4. RK Portenoy, E Bruera, eds. London: Oxford University Press, 2001. von Gunten CF, Camden B, Neely KJ, Franz 6, Martinez J. Prospective evaluation of referrals to a hospice/palliative medicine consultation service. J Palliative Med 1998;1:45-53. von Gunten CF, Martinez J. A program of hospice and palliative care ina private, nonprofit U.S. teaching hospital.J Palliative Med 1998; 1:265--275. von Gunten CF, Martinez J, Neely KJ, Twaddle M, Preodor M. Clinical experience in hospice and palliative medicine for clinicians in practice. J Palliative Med 1998;1:249-255. von Gunten CF, von Roenn JH, Gradishar W, Weitzman S. A hospice/palliative medicine rotation for fellows trainingin hematology-oncology.J Cancer Educ 1995;10:200-202. 131
132
PART FOUR: SELECTED BIBLIOGRAPHY
osanquet N. Providing a Palliative Care Service: Towards an Evidence Base. London: Oxford University Press, 1999. Byock I. Hospice and palliative care: A parting of the ways or a path to the future?J Palliative Med 1998;1(2): 165-176. Clark D, Hoc~leyJ, Ahmedzai S, eds. New ?%ernes in Palliative Care, Buckingham: Open University Press, 1997. Colleau SM. Advanced training in pain control and palliative medicine: Internaortunities. Cancer Pain Release 199S;ll(4):l-8. Physician education in palliative medicine: A vehicle to change the pain ~anagement.Cancer Pain Release 1996;9(3):1-2. ~ i c i l i Palliative a~ Care. London: Oxford University Press, 1994. ks 6, MacDonald N, eds. ?%e ~ e x t ~ oof oPalliative ~ Care, don: Oxford University Press, sed Care Teams: m e ~ o s ~ i t a l - ~ o s Inpice Dunlop RJ, ed. ~ o s ~ i t a l - ~ aPalliative terface, 2nd ed. London: Oxford University Press, 1998. Ferris FD, C ~ m ~I,geds. s Palliative Care: Towards a Consensus in Stan~ardles of Practice. Ottawa, Ontario: Canadian Palliative Care AssociaField D, Addington-Hall J. Extending specialist palliative care to all? Soc Sci Med 1999;48:1271-12SO. Gomez-Batistetanals MD, Roca J, BorrasJM,ViladiuP,Stjernsward J, Rius E, Catalonia demonstration project on palliative care implementation nt 995. Results in 1995.J Pain S y ~ ~ Mt a~n am~ e ~ e1996;12(2):73-78. iste X, Fontanals MD, Roca J, Martinez F, Valles E, Roige-Canals P. Ranning and policy implementationin palliative care. In: ClarkD, Hockley J, ~ m e d z a i, eds. New memes in Palliative Care. Buc~ngham:Open Society Press, 199 the deliveryofpalliative care.In: GomezSancho M. TheSpanishmodelfor Portenoy RK, Bruera E, eds. Topics in Palliative Care. Vol. 5 London: Oxford University Press, 2001. Higginson I. Evidence-based palliative care.Br Med J 1999;319:462-463. Lawlor P. Practice differences and fiiding common ground. Edmonton Palliative Care Program, Editorial, Editorial Program Guide, August 1998. c~.pa~ative.or~ar-a~g98.html/> MacDonald N. Palli ve Medicine: A Case-Based Manual. London: Oxford University Press, 199 Manfredi PL, Morrison RS, Morris J, Goldhirsch SL, Carter JM, Meier DE. Palliative care consultations: How do they impact the care of hospitalized patients?J Pain ~ a ~ a g e m e2000;20:166-173. nt O’Connor P, LatimerEJ. Hospital palliative care services: Three mode countries.J Pain Symptom Management 1992;7:406-413. reciente. Med Paliativa Porta J, Albo A. Cuidadospaliativos:Unahistoria 1998;5(4):33-38.
PART FOUR: SELECTED BIBLIOGRAPHY
133
Randall F, Downie R. Palliative Care Ethics: A Companion for All Specialties, 2nd ed. London: Oxford University Press, 1999. Robbins M. Evaluating Palliative Care: Establishing the Evidence Base.London: Oxford University Press, 1998. Walsh D, Gombeski WR Jr, Goldstein P, Hayes D, Armour M. Managing a palliative oncology program: The roleof a business plan.J Pain Symptom Manage18. ment 1994;9: 109-1
This Page Intentionally Left Blank
“Mother and Daughter” 02000 Maureen Hop, Hospice Volunteer me HOSPiCe of Martin G St. Lucie Residence Stuart. FL
This Page Intentionally Left Blank
MILDRED 2. SOLOMON, EdD
Education Development Center, Inc. Newton, Massachusetts In the United States, recent efforts in the national movement to improve end-oflife care have been driven primarily by individual palliative care experts and their professional specialty societies. These efforts include, for example,recent a statement of principles adopted by a large number of specialty societies,’ identification of clinical competencies that all physicians2-* and nurses5 should be able to ~ ~in ~ medicalte~tb0oks,~7’ demonstrate, calls for reformin medical e d ~ c a t i o nand and revision of licensing and professionalcertifkation. These first steps have been essential, foundational ones. However, efforts targeted exclusively to the skills of individual clinicians cannot alone do the job? The next wave of reform efforts must focus on institutional ac~ountabilityand will need to rely on organizational leadership and,hope~lly,consumer pressure. In the process, measurement will play a key role. In its landmark report, Approaching Death, the Institute of Medicine acknowledged the need for institutional accountability when it recommended that health care institutions apply methods of continuous quality improvementto the care of the dying? Various other groups have also called on health care institutions to hold themselves accountable forthe quality of end-of-lifecare they provideto patients and familie~.~-l~ In all these instances, measuring outcomesof care is seen as central to institutional accountability. Outcome measurement is also centrally related to consumers in at least two distinct ways. First, quality data are most effective when they are shared publicly, so that consumers and purchasersof health care can choose rationally on the basis of quality. Second, outcome measures ought to be designed on the basis of patient and family needs, as they are understood. In this section, we spotlight two outcome measurement tools developed by Irene J. Hi~ginson,PhD, at St. Christopher’s Hospice in London.l* Boththe Support Team Assessment Schedule(STAS) and her more recent Palliative Care Outcome Scale (POS) are audit tools-data collection instruments that allow palliative care services to audit how well they are performing on a range of issues
137
138 MEASURING QUALITY IN PALLIATIVE CARE
considered crucialto optimal end-of-life care. Both tools have been designed principally for usewith end-stage cancer patients and their families.15y16 The STAS has been used by 120 palliative care researchers in a variety of different health care settings, ranging from hospitals to home-based hospices, residential hospices, day care settings, and nursing homes. Seventyfive percent of these applications have occurred in the United Kingdom, but 25 percent are ongoing in a wide range of countries, including Canada, Australia, Poland, Spain, Singapore, Belgium,France,Ireland,Sweden,Holland,and the UnitedStates.Following the interview with Dr.Higginson, our featured innovator, we present MD, who describes hisexperience using the STAS comments from Franco Toscani, on his palliative care service in Cremona, Ita1y.l’ Dr. Toscani’s remarks are particularly pertinent in that inthe year 2000,the Italian government earmarked 450 billion lira, or roughly $238 million, for the establishment of hospices. More funds are expected in 2001 for the establishment of hospital-based palliative care services. According to Dr. Toscani, outcome measurement, such as he is gathering through the STAS, is essential not just for ensuring that the care system is delivering high quality care, but also for influencing funding priorities. Such data can demonstrate that earmarked money has been well spent and can make the case for additional fundsto meet u m e t needs. Despite these hopes for outcome measurement, it is a field essentially in its infancy, with many conceptual and methodologicalquestions still to be worked out. For example, it is not surprising that the STAS and POS were developed for end-stage cancer patients, as cancer has been the major disease model for palliative care. However, outcome measurement is likely to be very different for patients who cannot report their own pain and discomfort, such as comatose patients in intensivecare units or persons with dementia living in nursing homes. We now must conceptualize outcome measures for other kinds of patient populations. There are other methodological challenges as well. As Dr. Higginson notes in her interview, the items in the STAS and POS both derived from a priori assessments by the professional staff. In other words, they reflect what the experts think good care should accomplish. In the United States, the Foundation for Accountability (FACCT) has developed an approach that managed care plans can use to undertake outcome measurement.l8 FACCT explicitly drew upon data from a variety of consumer-based focus groups and consumer research activities. They included these consumer perspectivesto assure thattheir proposed measures would reflect consumer perceptions as well as expert opinion. Yet this strategy, too, is fraught with methodological minefields. Given the research documenting disparities between family and patient views on many fundamental questions in end-oflife care,19 to what extent and in what ways should outcome measurement rely on proxy reports? In short, there is a great dealof scientific work yetto be doneon outcome meato act? No. surement. Does that mean that health care institutions should wait There is much that can and should be done right now. End-of-life champions within hospitals, health care plans, nursing homes, and integrated health systems can:
INSTITUTIONALACCOUNTABILITY
IN END-OF-LIFE CARE 139
CQI. Too often, however, these resources are applied only to administrative aspects of hospital management (getting meals to patients’ rooms whilethe food is still hot; shortening wait times) and only rarely appliedto clinical aspects of caring for dying patients. Ideally, multidisciplina~ a team composed of peo the right mix of skills could take on this charge: staff with CQI expertise, medical and nursing leadership, social workers, pastoral counselors, membersof the ethics committee,people with management i ~ o ~ a t i skills, o n patient and family representatives, and experts from the local academic and research communi^.
One of the key functions of outcome measurement is to serve as a catalyst for institutional change. Collecting data about one’s own patientsone’s andown practice is one of the most effective strategies forencouragingchangesinpractice,particularly if specific individuals know they are accountable for results. Although outcomemeasuresareoftenconsidered of greatest importance, process measures are also important, particularlyas they can help to explain outcomes and can in themselves trigger behavior change. Survey results of clinical staff’s knowledge and attitudes can also be highlymotivating when reported back to groups of practitioners.*
ones. As Dr. Toscani states in his interview,one of the benefits of using the STAS was that it had to be adapted for his palliative care service and its patients. It was the process of revision that helped his staff c l a w their own goals and a ~ i v eat revised measures that workedbetter in theircontext. There aremany placesto find too1s.f Collecting them and considering their use in one’s own settin cellent early task for aCQI committee. *Approximately 50 health care institutions involved in the PainLink project and more than 100 institutions involved inDecisions Neur the End of Life have used survey toolsto identifjr stag knowledge and attitudes about key issues in pain management and end-of-life care. Institutions have used these tools andthe data they provideto motivate system changes in practice. For information about PainLink, see (bmw.edc.org/PainLink). For a description of the Decisions Near the End of Life Institutional Profiletool, contact: Stacy Piszcz, Decisions National CoordinatingCenter, Education Development Center, Inc., 55 Chapel Street, Newton, MA 02458. %ee, for example, The Toolkit of Instruments to Measure End-of-Life Care. (~w.chcr.brown.edu/pcoc/tool~t,htm) and Dr. Marcello Tamburini’s Quality of Life Assessment in Medicine website ( ~ . g k a m i . c o m / q l / ) .
140 MEASURINGQUALITY
IN PALLIATIVE CARE
cting data on a sm Continuous quality irnprovement, or audits as Dr. Higginsondescribes them, are not the same as evaluation research. The goal is not to evaluate whether something is effective; it is to monitor that something already proven effective (e.g. opioids for pain management) is in fact being delivered as intended. Thus, one need not be constrainedby the need for large sample sizes. Itbetter is to develop a small, feasible plan with repeated measurement than to wait for the right moment to launch a massive data collection effort.
.
r n a t ~ ~ to eformal § ~utcomemeasure There are many other kinds of data collection activities that can build institutional accountability. One managed care organization redesigned its benefit structure, assuring comprehensive end-of-life care benefits equivalentto the Medicare hospice benefit for their commercial enrollees, after conducting a small, qualitative interview study with family members who had experienced the death of a loved one in their system?* Focus groups can be an equally valid source of data, particularly if the organizational leadership has committed to the process and if findings are reported to people in a position to act on them. Right now, nearly all managed care organizations and many hospitals conduct patient sati§faction surveys. Hospitals tendto sample discharged patients and thosewho have visited the emergency room. Managed care surveys are often triggered by an ambulato~ care visit or are part of an annual member survey, Neitherof these kinds of data collection activities seek out information from family members whose relatives have died, thereby effectively excluding highly pertinent data about the end-oflife period. Although administrative changes in sampling procedures would have to be developed, member surveys and other ongoing data collection activities that are a routine part of quality assurance could be an porta ant source of data for building institutional accountability.$ Why should health care institutions take these kinds of steps? Both Dr. Toscani and Dr. Higginson are operating within national health systems,where planners can redirect resources to meet perceived needs. In such systems,as Dr. Toscani notes, there is a basic incentive to supply outcome data to funders. It can make or break one’s requesting for funding.Of course, it is not clear that European palliative care movements are, in fact, using outcome data to discern specific program needs and then request funding to match those needs, but the opportunity to do so exists in systems with central planning and allocationof resources. Where, however, will the incentive for accountability in end-of-life care come from in the U S . health care system? Purchasers are one obvious point of leverage. For the majority of patients who die each year (Le., those over age 65), this means the Health Care Financing Administration (HCFA). HCFA has launched a quality improvement program, whereby health care plans offering capitated risk
*I am grateful to Maria Schiff, Health Policy Manager, Massachusetts Division of Healthcare Finance &: Policy, for these ideas.
INSTITUTIONALACCOUNTABILITY IN END-OF-LIFE CARE 141
contracts to Medicare enrollees must initiatetwo performance improvement projects during the first contract year.21 To date, end-of-life improvement projects have not been an option for plans to work on, but there is no reason that they could not become a focus infuture years. For terminally ill patients under the age of 65, employers who contract with managed care organizations can bring pressure to bear on health plans to produce outcome dataon the quality of end-of-lifecare the plans are providingto their terminally ill members. However, there are far fewer deaths among younger, commercially insured managed care members,so employers may not have strong incentives to exert this kind ofpressure. Nevertheless, giventhe toll that dying takes on family caregivers, many of whom are in the workforce, employers would in fact stand to benefit if health plans were to offer more comprehensive benefits, including bereavement support and respite care. The Joint Commission for the Accreditation of Healthcare Organizations has taken important steps by including standards for key aspects of end-of-life care and for pain management. Unfortunately,the National Committee for QualityAssurance has not yet introduced end-of-life measures into the Health Plan Employee Data and Information Set (HEDIS@) system. Such measures would undoubtedly put end-of-life issueson managed care’s radarscreen. Ideally, one should also see a groundswell of consumer demand forbetter endof-life care. It is clearthat the public is worried about the issue, as support for assisted suicide demonstrates. If public education efforts intenslfy, perhaps the public’s concerns can be redirectedto demand better end-of-life care.If so, consumer demand couldbecomeapowerfulforcefor improvements in the care delivery system.Indeed, most successful change efforts (from the routine integration of Pap smears into annual examinations for women to fundamental changes in birthing practices) have come about through consumer pressure. In the future, consumer demand may become the single most important force driving accountability intothe system. there is no getting aroundthe need Even if and when consumer demand grows, for professional champions within our health care institutions. We need leaders willing to build accountability and measurement into the system, evenwhen there are no external carrots or sticks. For the time being anyway, it looks as though that will mean doing it just because it isthe right thing to do.
1 . Cassel CK, Foley KIM. Principles for Care of Patients at the End of Lijie: An Emerging Consensus Amongthe Specialties of Medicine. New York: Milbank Memorial Fund,1999. 2 . Institute of Medicine (IOM) Committee on Care at the End of Life. In: Approaching
142
MEASURINGQUALITY
IN PALLIATIVE CARE
Death: Improving Care at the End @Life. MJ Field, CK Cassel, eds. Washington,DC: Natiotndl Academy Press, 1997, p. 2 11. 3. American Board of Internal Medicine. Educational Resource Document: Caring for the Dying: Identification and Promotion of Physician Competency, 1996. 4. The AmericanMedicalAssociation’sEducation for Physicians on End-of-LifeCare (EPEC) (m.ama-assn.org/EPEC). 5. American Association of Colleges of Nursing. Educational standards and special projects AACN website (m.aacn.nche.edu/deathfin.htm). 6. Billings J, Block SD. Palliative care in undergraduate medical education: Status report and future directions.JW 1997;278:733-738. 7. Rabow M W , Hardie GE, Fair JM, McPhee SJ. End-of-life care content in 50 textbooks from multiple specialties.JW 2000;283:77 1-778. 8. Solomon MZ, Jennings B, Guilfoy V, Jackson R, O’Donnell L, Wolf S, Nolan K, KochWeser D, Donnelley S. Toward an expanded vision of clinical ethics education: From the individual to the institution. Kennedy Inst Ethics J 1991;83(1):225-245. 9. Solomon MZ, Romer AL, Sellers D, Jennings B, Miles S, The National Task Force on End-of-Life Care in Managed Care.Meeting the Challenge: TwelveRecommendations for Improving End-of-Life Carein Managed Care. Newton, MA: Education Development Center, Inc., 1999. 10. Education Development Center, Inc. Decisions Near the End of Life (m.edc.org/CAE). 11. Institute for Healthcare Improvement. BreakthroughSeries on End-of-LifeCare (m.ihi.org). 12. The United Hospital Fund Palliative Care Initiative (m.uhfnyc.org/archive/ clgrant/grpci.html). 13. Supportive Care of the Dying: A Coalition for Compassionate Care (m.careofdying.org) 14. Higginson IJ, Romer A L . Measuring the quality of care in palliative care services. In: Innovations in End-of-Life Care: Practical Strategies G International Perspectives, Volume 2. MZ Solomon, AL Romer, KS Heller, DE Weissman, eds. Larchmont, NY: Mary Ann Liebert, Inc., 2001, pp. 143-154. 15. Hearn J, Higginson IJ, on behalf of the Palliative Care Core Audit Project Advisory Group. Development and validation of a core outcome measure for palliative care: The palliative care outcome scale. Qual Health Care 1999;8:219-227. 16. Higginson I, ed. Clinical Audit in Palliative Care. Oxford: Radcliffe Medical Press, Ltd.,1993. 17. Toscani F, Romer AL. Using the STAS in a palliative care unit in Cremona, Italy. In: Innovations in End-ofLife Care: Practical Strategies G International Perspectives, Volume 2. MZ Solomon, AL Romer, KS Heller, DE Weissman, eds. Larchmont, NY: Mary Ann Liebert, Inc., 2001, pp. 155-162. 18. Yurk R, Lansky D, Bethell C. Quality of Care at the End of Life: Assessing Palliative Care for Patients and Families. Unpublished final report. Portland, OR: The Foundation for Accountability, 1999. 19. Pearlman RA, Uhlmann RF, Jecker NS. Spousal understanding of patient quality of life: Implications for surrogate decisions. J Clin Ethics 1992;3:114- 123. 20. Steinberg SM, Block SD. Caring for patients at the end of life in an HMO. J Palliative Med 1998;1:387-399. 2 1. Health Care Financing Administration. Quality Improvement System for Managed Care (QISMC): Introduction (m.hcfa.gov/quality/docs/qismc~2Din.htm).
An Interview with IRENE J. HIGGINSON, B Med Sei, BMBS, FFPHM, PhD Saint Christopher’s Hospice London, England Professor IreneJ Higginson, B Med Sci, BMBS,FFPHM, PhD, is a palliative medicine physician who has been researching audit and outcome measures in palliative care for more than I 5 years. For the past three years, she has been based at King’s CollegeSchool of Medicine and dentist^ and St. Christopher’s Hospicein London, England. In this interview with Anna L, Romer, EdD, she discussesthe purpose of audit andthe evolution of two quality of care measures she has designed: the Support Team Assessment Schedule (STAS) and the recently developed Palliative Care Outcome Scale (POS). There are nine core items on the STAS: Pain Control, Other Symptom Control, Patient Anxiety, Family Anxiety, Patient Insight, Family Insight, Communication Between Patient and Family, Communication Between Professionals, and Communication-Professional to Patient and Family. Staff members grade each of these domains using a forced choice severity scale of 0 to 4, The actual instrument just lists the item, for example, Pain Control, and a few words to cue the person using the form, “Effectof his/her pain on the patient.” The POS is a new tool that represents an evolution in practice, The POS has ten items and each includes a more specific question with a clear time period (the past three days).A key difference between the two tools is that the POS has twoparallel instruments: one for a staff member to complete and the other for the patient to complete. In terms of content, the POS includes many of the same domains but frames the questions more specifically and so has the potential to elicit more detailed and useful information. This increased specificitygives the POS a more fine-grained quality and bodes well for its use. The last two items on the POS inquire about how much time may have been wasted on unnecessary appointments and whether or not practical matters resulting from the illness have been addressed. In addition to the forced choice items, there is an open-ended question asking staff or the patient to list the main problems over the past three days. Staff also complete a performance status question.
144 MEASURINGQUALITY
IN PALLIATIVE CARE
Dr. Higginson describes the evolution of the two measures and reflects on the interface between quality of care, that is, a measure of the care palliative care teams providebased on their own assessments of patient needs and experience, and quality of lqe, a term grounded in patients’ subjective experience. Dr. Higginson details her hopes for the POS, a tool that attempts to address this gap between health care professionals’ perspectives and patients’ perspectives by using two instruments withsimilar itemsfor staff and patients to complete separately. rne~ How do you understand audit and why is audit important? Is audit different from evaluation?
:Are you
suggesting that audit includes evaluation but goes further?
: Yes, but they also differ in scale. Audit is something that everyone can do on a small scale. You can audit the care of one person or ten people or what a service is doing. The idea is you are determining whether a particular intervention or treatment works for the group of people that you are considering, and then, once you know, you can improve things. In evaluation studies, you are trying to decide whether you should be doing any treatment at all for a given problem, so you usually need a lot of cases and a lot of people.
: Audit
sounds similar to what we call continuous quality improvement
(CQI) in the United States. Can you build a bridge between these terms? :In fact, there is a great dealof overlap between the terms. In many instances, you would regard a clinical audit as one particular section of a larger quality imor seven provement program.So, a quality improvement program might have six audits included withinit. For example, you might have an audit looking at access to a service, another looking atthe clinical managementof care, and another look-
MEASURING THE QUALITY OF CARE IN PALLIATIVE CARESERVICES
1
ing at bereavement care. They would all be part of one continuous improvement program. in ~ r i t i s h ~ e d i c a l ~ o u r In 1980, Charles Shaw published a series of articles the nal about this c ~ n c e p t . l In - ~that series, he used a number of terms that add up to the same concept, that is, a cycle of activities designed to improve practice. You decide what you think you should be doing, find a way to review it, and then feed the results back into practice to improve patient and family care. That cyclical approach is generally what people call “audit, or sometimes “quality improvement.” I could have renamed my book Quality ~mprovementin Palliative Care? If I had, I might have gone wider and looked at some of the nonclinical aspects of care. In other words, it might then have included some of the more organizational things, such as how you train staff or where you put staff. These activities do not tend to come under the more narrow rubric of clinical audit. ”
:Please tell us about the particular tool you designed almost ten yearsago to audit palliative care services:the Support Team Assessment Schedule (STAS), m a t were your goals when you began?
: We came up with the idea of finding ways to review what the clinical sermces were doing, looking atwhether their goals were achieved or not, and then looking at how we might improve those results. If you are deciding how to review a service,the most standard wayof doing it is to use an approach that was originally developed by Avedis Donabedian, in Michigan?jR He approached care by looking atstructure, process, and outcomes, The structure of care refersto the staff and the resources that you have;the process of care refers to what you do
146 MEASURING QUALITY IN PALLIATIVE CARE
we came up with a five-point scale for each item, which would be a grading of how severe the problem was forthe patient or family member whose experience the staff member was assessing. We calledthis toolthe Support Team Assessment Schedule (STAS) because it gave a staff assessment at a particular point in timeof how much of a problem a patient or family member hadwith each of those items. Then the team could look athow the scores on each item changed over time and whether things got better or worse. So, in a sense, you could see the results of care in terms of these particular outcome measures. The nine core items on the STAS are: Pain Control, Other Symptom Control, Patient Anxiety, Family Anxiety, Patient Insight,Family Insight, C o ~ u n i c a t i o nBetween Patient and Family,Communication Between Professionals, and Communication-Professional to Patient and Family. : That brings us to a very interesting conundrum, which you have talked about in a number of your articles. How do you train people to assess something from the patientk perspective if they are not actually asking the patient? How do staff assesspatient experience? : There is a conundrum in that. We did quite a lot of work in trying to understand the different perspectives that patients,family members, and staff bring to completing this assessment. I think that every person brings his or her own particular biases and viewpoints to an assessment. People come with different perspectives, which vary from patient to patient, so even when patients record an assessment, they assess things within the frame of their own life experience. Similarly, family members will bring not only their life experience but also their own personal feelings at that moment in time to the assessment. I think you have to accept that all of these perspectives are slightly different, and all are important. Whenever we use an assessment,we need to be aware of who makes it and what effect that has. For example, if you use staff, they will tend to assess a patient within the range of experience of patients that they have seen and with their own particular biases about what they want to see and what they don't want to see. One of the important things to get staff to do is to ask patients and family members about some things that staff might otherwise prefer to ignore. Palliative care staff are verygoodatasking about things that staff on other services do not ask about. In a way, the assessment schedule actually changed practice because it made staff ask about things that they would not 0therwise ask about. We trained them to try to record how the patient felt or considered the problems themselves, rather than the staff's own perception of the
MEASURING THE QUALITY OF CARE IN PALLIATIVE CARESERVICES
147
items. The other problem with staff making assessments is that standard training encourages you to measure the length of something or the size of something rather than the degree of something, such as how much of a problem it is to the patient. So, we really tried to get staff to record how much of a problem something was to the person. : How
much training does it take to implement the STAS?
: It is a process of role training and practicing. You can give people the conthe tool cept of it quite quickly, but usually it is only after people have been using on a regular basis for a period of a few months that they would bereally trained because they need to practice and discuss what the items on the STAS mean. We start the training on imaginary patients, so people begin with descriptions of patients and then go into role play, During the initial day of training, people practice using the measure, interpreting the scores, and so on, and then they go on and practice it in their work settings. Usually, the first month of use is really a month of training, in which people are learning to understand the measure and assessment. Then, the assessments can be included in the patient record. :Do you
encourage the same member of the palliative care team to do the assessments, or do different people assess each patient, each time? : For the audit to be effective, we believe it needs to be part of routine practice. The system needsto work inthe way the team works and notthe other way around. The team needs to fit the assessment in with that practice. We have some suggestions, and we can give some guidance about how other people do it. Often, palliative care teams do use a key worker to do the assessments because they havea key worker assignedto a patient, but it reallydepends on how the team works. Sometimes,the discrepancies are interesting.For example, if from one week to the next, different people are making an assessment of the same patient, and if they get a very different assessment of severity for an item for the same patient, it becomes quite interesting to discuss it and understand why. The challenge in palliative care is that often patients cannot complete assessments, or even if they can complete forms, they may not want to. Therefore, I think that training staff to be able to interview a person and to record information that could then be used in a standardized assessment, almost like what psychiatrists do in the present state examination, is very important. In the future, we want to have a kindof gold standard assessment ofa person’s issues or concerns based on a particular formatof interview. In this interview,the staff member would ask i~ormation for from the patient, so that the patient would not have to fill out a form.
this scenario, the tool would be a form that initiates the interview process and then allows the staff member to record the person’s experience. :In
MEASURING QUALITY IN PALLIATIVE CARE
~ o u l dthat be more time consuming than whatyou have ~ e s c r i ~ as e d the current use of the STAS? : Yes, it would be more time consuming in one way, but on the other hand, an initial palliative care interview may take a long time anyway. If it is done at a person’s home or it is a first interview, it may take three quarters of an hour or more. Later assessments are as long as the person needs or the number of problems warrant. If you are looking after someone in home care, you might have a fairly long talk with that person at each visit. It takes time for the person to tell you what he or she feels about any problems and what is happening. m a t we are suggesting is that we should try to fiid a way to capture and write down the results of what some of the best palliative care services already do. In other words, during that home visit, they use this longer interview and explore not only a person’s symptoms but alsohow the person is feeling, how the family is feeling, and how the whole family is coping. :As good palliative care services in the U K . are already doing this kind of in-de~thinterview as part of practice, is the challenge, then, to get staff to acc ~ r a t record e~ what they are learning from the patient in a format like the
STAS? : Exactly.
In fact, we’vemoved on from the STAS into a newer measure called Palliative Care Outcome Scale (POS), which is a bit shorter and has a formon which patients may complete their own assessments. The patient formis similar but slightly more user-friendly in format. In addition, I’m increasingly moving tobe regularly recorded-particular sympward a checklist of some items that should toms, such as dyspnea or nausea-because that helps remind health care professionals and screens for problems clinically. Staff might not otherwise ask about toms, and the person might not raise them. need a section that is free-field,where patients can raise whate~eris d elicit thisi~ormationby asking anopen-ended quesyou?”We havesuch e mainthingsthatconcerning
MEASURING THE QUALITY OF CARE IN PALLIATIVE CARESERVICES
149
necessarily wantto make people have a certain typeof insight. You tend to work with where people are. Particularly given the all research done on cancer patients, in which there appears to be some evidence that denial has been associated with longer survival, it would actually be a bit of a problem to start fiddling around with people’s insight. Unlike pain, which you would want to relieve, you don’t necessarily want everybodyto have full insight,so we thought those items inthe STAS should be dropped from anything we would call an outcomes scale. Some staff, however, still like to use the insight items because they provide an understanding of where the patient is, which is of value for communication. The actual wording used in the two instruments is rather different. The POS grounds each question in a very particular time frame, namely, “over the past 3 days.” The STAS considered a week, which didn’t work so well in inpatient settings. Furthermore, in the POS, each probe is in the form of a specific question, which in some instances explicitly names whose perspective is being elicited. For example, question 9 of the staff questionnaire reads, “Overthe past 3 days, how much time do you feel has been wasted on appointments relating to the health care of this patient, e.g., waiting around for transport or repeating tests?” Both to four. The tools follow eachprobe with a forced choice severity scale from zero words to c l a m the severity level are more concise inthe POS. For example, the first item in the staff POS reads: “Over the past 3 days, has the patient been affected by pain?”
0 0 Not at all, no effect 0 1 Slightly-but not bothered to be rid of it 0 2 Moderately-pain limits some activity 0 3 Severely, activities or concentration markedly affected 0 4 Overwhelmingly, unable to think of anything else9 The staff POS has ten items, followed by an open-ended question and a question on performance status.Most of the nine core STAS items are covered in the ten POS items. We did move the communication and information items arounda little bit. We decided to have something called “information” rather than “communication” because the end result was whether people felt they had the information they wanted to have. We also looked atthe McGill Quality of Life Questionnaire’“ andwere quite impressed with the ideas that they had tried to look at, including self-worth and wellbeing. We wanted to try to include some items in those areas. I have to say we are reexamining that domain because it does not always work well in an English population. For example, people were asked about how they would rate their well-being and how they would rate their life as they looked at it overall. Question 7’ of the staff POS reads, “Over the past 3 days, do you think they have felt life was worth living?” We’ve had mixed reviews on this question and a related question about how patients feel about themselves. Some patients thought the A small numquestions were a very abrupt way of askingabout this sensitive issue. ber of patients and staff found these questions uncomfortable, although in other
MEASURING QUALITY IN PALLIATIVE CARE
instances7 these
~uestionso
I t h ~ the k concerns his area and to see if
most exactly the same tionnaires7so that we could compare them.
is s o ~ e t hat h ~only ~ ~the patient at i~ea? ing and can tell palliative care, unless rmation on your weakunable to tell you.Using proxies is nec-
factor analysis are all
dete
ofessionals. This takes us into
the realm of
care. tanid how people r perception of what makes what is important to you at e clinical setting it is cr~cialto unatient. It is not
scores.
e, like the Euro~eanOrof life meaent of ~ a n c e r~ u a l i ~ of Cancer Ther T>12 and that patient atient has a dgferent score, ge in score is clinically im-
MEASURING THE QUALITY OF CARE IN PALLIATIVE CARESERVICES
ant is how you add e changes that h is i ~ u e n c e dvery much by expect of the scales is that they do not t wornan who was quite frail and on a quality of life measure by s lousy quality of life because I can’t do my washing good quality of life if somebody c that one of the weaknesses of m frail people is that we exclude that get around so :~ a t i e n t s ~ u n d e r s t a n ~about i n ~ sparticularsymptoms or mean inform the concepts of ~ u a l i ~ and ~ u a l i t yof care, so aries between these two concepts can b e c o ~ eless clear. an you say more about this potential confusion?
For me, an ou
is is It the result of an i te . In order care for to professionals haveto under st an^ patients’ experience, including perceptions of quality of life. The professionals are the ones who are doing thingsto make changes andso improve overall quality of care. If the staff do not rmderstand the patients’ per perception is completely are not aware of that gap, that is not help~ll. One of my objectives isto try to bring the two sets of perceptions closer together the gap between what the professional thin~s and what the patient thinks is often a major problem in deali We need to close that gap. High quality ofcare is alsoa result or outcomeof care, f life is one of
on quality of life-often This new ~ s t ~ l ~ e n t , the potential gap ins perspectives on Christopher’s Hospic being used routinely something that they is interesting in itse
at about the social accep atives because of be in^ afraid to
i~itconcern,patie
152
MEASURIN~QUALITY INPALLIATIVECARE
tieed any of that as you are working with a patient assessment and a staff assessment? :Some patients wantto please when they are completing assessments. In some ways, having the open questions atthe beginning about a person’s mainconcern helps to draw them away from that. It is one of the new things that I like. :Are
there other areas in which you are learning right now?
: There
are two main areas-extending the POS beyond the specialist palliative care setting into other settings and looking much more athow it is useful in the clinical setting. We are exploring these questions as part of a new project, Promote, which is funded by the National Lotteries Research Board. Palliative care is relevant in many areas ofcare. It is relevant not onlywhen people get into hospital or specialist palliative care services, but alsowhen they are with their family doctors or with other people, maybe even when people are thinking about when to refer somebody to a palliative care service. I actually think the assessment could be quite useful for doctors to help make decisions about referral to palliative care services. m a t ’ s more, I think it could help other health care professionals, maybe even more than palliative care people, to explore what might be important to patients and families. The other area I’m interested in right now is trying to look more at the utility of these types of tools in clinical practice. These instrumentswere developed as audit toolsto measure how well a service works, but they can also be useful in the individualclinical encounter. I want to learn whether the tool actually helps communication between the individualand the health professionalor helps the health professional sort and prioritize problems and plan treatment or interventions. Or can it be used to look at how well an individualisresponding to aparticular course of treatment or intervention? :Are
the STAS and POS used in that way right now?
am quite interested in tryingto understand how it could be used more in that way. Remember,these tools were originally designed for the purpose of audit, which is for quality managementof groups of patients. Theirpurpose was to identify groups of patients who did well or badly or to pick out individuals who did well or badly, but not to plan individual care. Although it wasn’tthe original plan, using it in this way had value for the staE and patients because it was clintend ically based.A lot of people are using the STAS in that way. The tools do not to get used if they are not put in the individual charts, so the places that have :I
MEASURING THE QUALITY OF CARE IN PALLIATIVE CARESERVICES
153
continued to use the STAS are the ones that use it in the individual charts. In fact, I would say the STAS is being used more in individual charts than not. I’m interested inhow to push the clinical use further. With regardto the POS, I’m not yet sure how that will go. We’ll have to see. :It
seems as though the POS may be even more important for individual care because it is designed to capture any gap between clinician perceptions and patient perceptions. IJH: Yes, I think so. I’d be interested in looking at barriers to its implementation, what makes it work or not work in individual care. :How
many people are now using the POS?
in the United Kingdom. We originally started in eight centers, and most of them are still using it in one form or another. Since then, we’ve done some training days,SO I don’t have an accurate count of how many are using it now. I wouldsay approximately 15 palliative care teams are using it at the moment. We had one general practice that wasusing it originally. At present, 96 teams have registered an interest in using the POS. The sites involved in Promote, our new project, will also be using this tool. We are just now recruiting the sites in London and the West Midlands. : It is primarily being used
:How
long does the training take for the POS?
IJH: At the moment, we are running a half-day training. :Is
the POS available for clinicians to use yet?
: We have just published an article in Quality and Healthcare, that included the staff version of the instr~ment.~ This first articlereports on the psychometric properties of the tool. I do ask that people register with me to let us know they are interested in usingit, so we can give them updates. A charity, Help the Hospices, has funded us to write a booklet. We’ve given a bit more thought to how we develop the project and how to make the tool itself more user-friendly. We are pleased to let people have access to it on the web, through Innovations in End-of-r;zfie Care.”We don’t charge for it, but if people register, it’s very helpful because we know who is and isn’t usingit. We can follow up with users so that we can get their views about what they have done and send them updates and new information.
*See Appendix B, pp. 283-290, this volume, for patient and staff questionnaires, background information, and registration fom, or download these forms from Innovations in Ilnd-ofLife Care (wwtv2.edc.org/lastacts/archives.asp).
154 MEASURING QUALITY IN PALLIATIVE CARE
1. Shaw CD. Aspects of audit. 1. The background. Br Med J 1980;280:1256-1258. 2. Shaw CD. Aspects of audit. 2. Audit in British hospitals. BrMedJ 1980;280:1314-1316.
3. Shaw CD. Aspects of audit. 3. AuditinBritishgeneral practice. Br Med J 1980;280:1361-1363. 4. Shaw CD. Aspects of audit. 4. Acceptabilityof audit. Br Med J 1980;280:1443-1446. 5. Shaw CD. Aspects of audit. 5. Looking forwardto audit. BrMedJ 1980;280:1509-1511. 6. Higginson I, ed. Clinical Audit in Palliative Care. Oxford: Radcliffe Medical Press, 1993. 7. Donabedian A. Evaluating the quality of medical care. Milbank Mem Fund Q 1966;44:166-203. 8. Donabedian A. Explorations in Quality Assessment and Monitoring. Vol. 1, The Def inition of Quality and Approaches to Its Assessment. Vol. 2, The Criteria and Standards of Monitoring. Vol. 3, The Methods and Findings of Quality Assessment and Monitoring: An Illustrated Analysis. Ann Arbor, MI: Health Administration Press, 1980,1982,1985. 9. Hearn J, Higginson IJ, on behalf of the Palliative Care Core Audit Project Advisory Group. Development and validation of a core outcome measure for palliative care: The palliative care outcome scale. Qual Health Care 1999;8:219-227. Also available online at Innovations in End-ofLife Care, Archived 1ssues:Vol. 2, No. 1, JanuaryFebruary 2000 (wmTaT.edc.org/lastacts/). 10. Cohen SR, Mount BM, Strobe1 MG, Bui F. The McGill Quality of Life Qtzestionndire:A measure of quality of life appropriate for people with advanced disease.A preliminary study of validity and acceptability.Palliative Med 1995; 9:207-219. 11. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, FilibertiA, Flechtner H, Fleishman SB, de HaesCJM,Kaasa S, IUee M, Osoba D, Razavi D, Rofe PB, Schraub S, Sneeuw K, Sullivan M, Takeda F, for the EORTC Study Group on Quality of Life. The European Organization for Researchand Treatment of Cancer QLQ-C30: A quality of life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 1993; 85565-376. 12. CellaDF,TulskyDS,GrayG,Sarafian B, Lloyd S, Linn E, Bonomi A., Silberman M, Yellen SB, Winicour P, BrannonJ, Eckberg I(, Purl S, Blendowski C, Goodman M, Barnick M, Stewart I, McHale M, Bonomi P, Kaplan E, Taylor s, Thomas C, HarrisJ. The Functional Assessment of Cancer Therapy (FACT) Scale: Development and validation of the general measure.J Clin Oncol 1993;11(3):570-579.
An Interview with F
CO TOSCANI, MI>
spital of Cremona C r e ~ o n aItaly ,
I n 2000, the Italian governmente a r ~ a r k e d450 billion lira, approxi~ately $238 illi ion, to the development of hospices, and more funding next year is expected for the establishment of palliative care services in hospitals throughout the country. Here Franco Toscani, MD, speaks with Anna 1. Romer, EdD, about the importance of audit for thefuture ofpalliative care
in Italy and describes his use of IreneJ Higginson’s Support Team Assessment Schedule (STAS) in research and as an audit tool at the ~alliative Care Unit be directs in Cremona, Italy.
e~ As you think about measuring quality of care and b e ~ i n g your staff do the best job they can do, what are your most pressing concerns right now? scani: I believe that evaluation and audit are critical. We have to evaluate what we are doing. As scientists, we should not accept that palliative care is, by definition, good. Palliative care was bred within medicine because it looks promising andgood, but one has to demonstrate that it is good, and one has to give the instrument to others so that they can criticizewhat we are doing. This is the difference between science and something else. I don’t know whether this is the casein the UnitedStates, but in Italy, this is a very critical point because palliative medicine is still seeking legitimacy with most of the other disciplines in medicine. It is important that we evaluate what we are doing, especially at this moment, because two months ago,the Italian government made a very large investment of money to provide pallia155
156 MEASURINGQUALITY
IN PALLIATIVE CARE
tive care throughout the country. We also have to demonstrate to the government that the money is well used, what we need, and whether the funding is adequate. So, we need to study the assessment of the quality of palliative care we are offering. The Support Team Assessment Schedule (STAS) has helped us begin this important process. :How much moneydid the Italian governmentallocate to establishingpalliat~~ care e services throughout the country? : Four hundred fifty billion lira, or roughly $238 million. This is just a startup investment in palliative care. This money was targeted for building and repairing hospitals, but now it is being allocated for building hospices. This money is not s~ficientto establish palliative care services, but in the government’s next budget cycle, the need for more money for the organization of work and so on will be discussed. :~
i c ish most important and pressing now, from yourperspective-developing good instruments?stuff training?or changing how people think? :All of
the above! You have to remember that in Italy, although palliative care actually is not young, officially it is just a baby, born at the end of 1999, and we have a lot of resistance against palliative care. First, we have to assess palliative care becausewe have to demonstrate to our governmentwhat we are doing. Then, we have to demonstrate to the other specialists that we are doing something that no one else is able to do-in other words, that palliative care is a necessary discipline. It is probably too early in Italy to speak about a palliative care specialty, although that is the direction in which we are going. We have to persuade people to care, speak about, and work with the dying. We have to persuade people to accept the concept that people must control what happens to them when they are dying and that there must be open communication between clinicians and patients. We have to change the mentality, which is very, very different from that of Northern Europe or the United States. For instance, now we are creating a of lothospices inItaly because the government gave funds that; for in the future, probably every hospital will have a hospice. But what about the mentality? What isthe use of hospice if people do not accept it? People say,“Oh,that isthe I don’t want to go there home for dying. No, because people go there and die.” Here in Cremona, we have had some success in changing how people think about dying because we use volunteers and we have been working here for many years. But what about in a place where suddenly a palliative care service or a hospice starts up, where nobody is used to thinking about this? This is a very important point because it can make the dif-
USING THE STAS IN A PALLIATIVE CARE UNIT IN CREMONA, ITALY 157
ference between starting and stopping forever. We have to change how people think about dying. : What is your
clinical setting, and what doyou do there?
FT: The Palliative Care Unit is based ainmiddle-sized general hospital in Cremona,
Italy, a city in a rural setting. This part of Italy is the flat,Midwest like ofthe United States. Our unit cares for a populationof approximately 170,000 people living in our catchment area, including about 70,000 in the city of Cremona. The others a hospital, but we also provide palliative live in small villages. We are based in care at home.At the moment, we have no specialized inpatient hospice beds, but we hope that at the end of 2000 we will have some. In the last 20 years, we have had no inpatient hospice beds in Italy because our Italy today, palhospital and health care organization did not include hospiceIncare. liative care is provided as inpatient consultation for patients in hospital wards, outpatient service for patients who are ambulatory, and home hospice care, Palliative care units providing outpatient or home care the are prevailing model in Italy today. :How
many inpatieet hospices are there now in Italy?
: There are six or seven. There is one in Brescia, which is approximately 60 kilometers from my city, and one in Milan. The oldest one is about ten years old, but it is a private organization and not a public hospital. : What is your
clinical specialty?
FT: I am an anesthesiologist, and I startedwith pain therapy.About 20 years ago, I went to England to learn some techniques for pain therapy and the for first time
in my life encountered the hospice model. Thisexperience changed my life. That was at about the same time that most of the older palliative care services started in Italy. Professor Vittorio Ventafridda’s palliative care service in Milan was the first, and the second was mine in Cremona. I started officially in 1982, one year after Professor Ventafridda. I had begun caring for pain in cancer patients a couple of years before, but without any real knowledge. : Is your
team in Cremona interdisciplinav?
FT: Yes. We have two doctors, a colleague of mine and me, who are paid by the
hospital as members of the staff. We have three nurses and one social worker, who are also hospital staff. In addition, a private association gives us some resources that we use to pay other nurses and doctors as well as a psychologist. This association also provides volunteers, who do counseling as part of our home care services. So now, in the home care service, we have four nurses, one fulltime and one half-time doctor, a part-time psychologist, and approximately40 to 45 volunteers.
158 MEASURINGQUALITY
:How
IN PALLIATIVE CARE
many home-based patients does your team care for every week?
:"he
prevalence is 12 or 13 patients per week, on average. Our team cares for 300 to 400 patients a year. : Are the palliative care services you provide available to eveyone who lives in the area as part of what the national health system offers? : In Cremona, the possibility to be cared for by our services is guaranteed for in most of Italy, howeveryone and is completelyfree of charge. It is not like this ever, because most Italian home care and palliative care services were founded, like mine, through private association funds. Thus, palliative care services not are found everywhere. :How
do patients gainaccess to your services?
: In Italy, the general practitioner can send patientsto specialists or hospitals. Our services, like most palliative care services in Italy,are actually specialist services. The services are basedin the hospital, so the general practitioner refersthe patient to our service ashe would to any other specialist. We provide care along with the general practitionerto patients at home. Everything we do in the home is with the permission and assistance of the general practitioner. Officially, we work as a team with the general practitioner. In reality,the general practitioner gives us free rein to care for the patient.
: Can patients refer themselvesfor palliative care services,or does the gem erul p~actitione~ need to make that decision? : I thinkthatnogeneralpractitionerwouldsay to patients who ask for palliative care services. Specialists on the hospital ward also refer some patients to us. For instance, if a patient is in the hospital for some kind of therapy, and the one of our colleagues thinks thatthe patient can benefit from our assistance, specialist may consult us. : IVhy have you chosen Irene Higginson's STAS to audit the services you are providing? How are you using that measure?
FT: Many years ago, I attended a congress in the north of Europe, where I met Irene Higginson, and she presented the STAS." It looked very helpful. We began using the SI'AS at my Palliative Care Unit in Cremona becausewe had no way of measuring what we were doing or of standardizing communication among the
*To access a copy of the STAS, see Marcello Tamburini's Quality ofLife Assessment in Medicine website (vmw.glamm.com/ql/). Readers can download the complete STAS and registration information from that website for free.
USING THE STAS IN A PALLIATIVE CARE UNIT IN CREMONA, ITALY 159
teams. We also used the STAS as an outcome measure in a national survey to eval, have used uate the care provided to patients in the last week of life? T ~ u s we to provide a systematic basis for discussion among the STAS both for evaluation and the palliative care team to improve care. :Did you have to adapt the tool in any way to f i t the Italian culture and language?
FT: Yes, we made many changes. We started with the original STAS, which I believe had 14 items. Some items were not suitable for our local situation because Italy is very different from England. Within 100 kilometers, there are completely different cultures. TheSTAS worked for me, but not necessarily for others in this country. : '1;1;7jichof
the items in the STAS were most useful to you?
:I can tell you what we are using. The names may not be exactly the same as in Dr. Higginson's original instrument. We use the following items: Pain Control, Other Symptom Control, Patient Anxiety, Family Anxiety, Patient Insight, Family Insight, and Practical Tools or Needs. Then we have Communication Between Patient and Family and CommunicationArnong Professionals. We have split the last item in two, into Communication Between Professionals and Family, and Communication Between Professionals and Patient.We did this because we observed that sometimesthere are conflicts in communication between family andpatients. In Italy, many families wish to keep patients unaware of the diagnosis and prognosis. Conflicts may occur if the patient wants to communicate with the staff about the illness, but the family does not want this to happen? We added two new items to the STAS for use in our palliative care unit. The first isthe Family.'~ Capacity for Understanding or Recognizing the Needs of the Patient. The second is Degree of Team Satisfaction. : '1;1;7jatdoes the
team like about using this tool, and whatdo they,perhaps, have difficulty with? FT: vvlclat the team liked most was that this instrument pushed us own practice. The tool gave us a rational way to criticize and consider our work. This process was reallyvery exciting,andpeople were happy to work with the STAS. The challengeof creating new items or eliminating items was also a stimulating
to audit our
read more about this issue, see Communication, Truth Telling and Advance Care Planning. In: Solomon MZ, Rorner AI,, Heller KS, eds. Innovatidm in End-ofLife Care: Practical Strategies and International Perspectives. Vol. 1, Larchont, N Y : Mary Ann Liebert, Inc., 2000, pp. 13-61. $710
160 MEASURINGQUALITY
IN PALLIATIVE CARE
task. The team members felt that they were participatinginsomethingpracticaland useful. People thought that the STAS helped to organize our discussions because prior to that, our discussions were very random.For instance, before using the STAS, we might spend an hour discussing one particular aspect of a situation and then run out of time and haveto skip overother aspects of care. We felt that these less organized discussionswere not a good, systematic way of working. : For
which patients doyou use the STAS?
FT: All patients cared for at home. :Do you do the audit and report on your findingson every patient on a regular weekly basis?
FT: Yes, w e hold kvo meetings for the entire team every week. Inthe first meeting, we discuss the STAS results. :Do you keep a record of the STAS in each individual medical record and then compare them?
FT:Yes. :Do you
use it as a tool to help you provide better care? Forinstance, when you observe a score not going down on aparticularpatient from week to week?* does it prompt someone to say, “Something’s wrong here.Wlhat can we do?” one of the criticisms we have of this instrument. Some items give you a very sensitive measure of changes in the patient. Some, however, do not give you this information ina sensitive way.For example, if a patient has a problem in communication this week and has no problem next week, and no problem the following week, and again no problem the week after that, and then the next week, the patient has a problem, that will give you the impression that something is happening. In contrast, the measure Other Symptom Control is muchtoo broad. It should be much more precise, althoughif it is, then it may be too time consuming to use.
FT: Yes, in some items, but this is
: I n one of the appendices of L3r. Higginson’s book? she lists a whole set of particular symptoms that can be added to the STAS.2Are you using those as well?
*In the STAS, where the names of each item refer to a potential problem, such as “Patient Anxiety” or “Pain,”a lower score on the 0-4 scale on a particular item indicatesfewer problems, or 0 indicates an absence of a problem in that domain.
USING THE STAS IN A PALLIATIVE CARE UNIT IN CREMONA, ITALY 161
FT: No, I am just using the basic STAS. Dr. Higginson recently developed a new instrument, the POS, which I would like to use later this year.3 Sometimes, the STAS does not coincide with our clinical experience. For instance, we used the supplemental or additional itemon the spiritual aspectof care for about5 years, yetwe have never had anythingto say about this aspectof care. We also have had a chaplain on our team for many years, but it may be that in Italy, spiritual habits are not the same as in the United Kingdom or the United States. :How
do you evaluate the spiritual aspect of care?
: Actually, we
have no ideahow to evaluate it. I think that in Italy nobody has a very clear idea about this. We have veryfew professionals prepared and involved in spiritual care? We have had a chaplain who had experience in a hospice in London, but our o r ~ a ~ z a t i oofnchaplains in Italy is very different. For example, it’s not possible for a chaplain fromthe palliative care teamto go to the home of a patient without permission fromthe parish priest. :Are
these territorial issues?
T: That’s right. Although Italy is a Catholic country, because of the particular position of the church in our society, it is very rare that someone will share his or her deep and private thoughts with the priest. Even people who claim to be religious often are not very happyto see a priestwhen they are seriously ill inthe hospital. They may viewa visit from a priestas worrisome oras a signof bad luck. Visits frompriests are associated with administering the sacrament of the sick. So, in my experience, priests are generally not welcome as “carer” a or a “friend”except in situations in which the patient is actually dying. In Italy, most priests are not prepared for clinical, pastoral care.
have any advicefor clinicians working in palliative care services who might want to use the STAS to measure quality of care? :Do you
: I am happy with the STAS. The most important advice I can givetoisanalyze and moddy the instrument according to the actual situation, the actual culture, and the actual organization of the team. I do not think it is possible to import an instrument &e this without any changes. Also,theprocess of changing the instrument is very irnportant because it is an opportunity for understanding and thinking about what you are doing and for growing.
§For more information on this topic, see Part Seven: Spirituality in End-of-Life Care.
pp. 199-233.
162 MEASURINGQUALITY
IN PALLIATIVE CARE
Probably, the STAS alone is not sufficient for evaluating some situations; for instance, we are using a different inst~lmentto measure quality of life.
at inst~uments are you using to measure quality of life? :We
use the Therapy Impact Questio~aire(TI@.§§ That is the only quality of duced in Italy. My close friend, Marcello Tamburini, MD, deent, and it was validated in a palliative care setting.
:In contrast to the S ~ ~ is S the , TIQ something that patientsfill out themselves? : It
is a self-report, but you also can ask the patients the questions and write down their answers on the scale. We use the TIQ when we assess a patient or when new and different situations develop. We do not use a self-report instrument just to follow a situation that we can follow inanother way because we believe that asking a patient to answer these questions is a burden. For most clinical analyses,our philosophy is that we check something only if we need an answer that can inform practical action. For example, we do not check blood cells just to b o w what is happening. We check the blood cells onlyif the patient has anemia, which could be caused by a loss of blood. So, we test his blood cells in order to see whether we should give him bloodto help him recover from this weakness. The same is true for our use of the TIQ. We would use it to inform not only a clinical ~terventionbut also a support or a psychological intervention. Whenwe think that there is something thatwe can do andthe patient can tellus about his or her experience, we use the TIQ. However, the STAS audit is much easier because it does not burden the patient. We also can use the STAS just for assessing and monitoring the development of a project because this isa burden for us but not for the patient.
Peruselli C, Di Giuilo P, Toscani F, Gallucci M, Brunelli C, Costantini M, Tamburini M, Paci E, Miccinesi G, Addington-Hall J, Higginson IJ Home . palliative care for terminal cancer patients: A survey on the final week of life. Palliative Med 1999;13:233-241. Higginson IJ ed. , Clinical Audit in Palliative Care. Oxford: Radcliffe Medical Press, Ltd., 1993, Appendix €3,pp. 182-186. Hearn J) Higginson IJ on,behalf of the Palliative Care Core Audit Project Advisory Group. Development and validationof a core outcome measure for palliative care: The Palliative Care Outcome Scale. Qual Health Care 1999;8:219-22’7.
§§Toaccess a copy of the TIQ, visit Marcello Tarnburini’sQuality of Life Assessment in Medicine website at ( ~ . g l a ~ l ~ . c o r nand / ~search l) for TIQ.
Selected references by contributors to this park Brunelli C, Constantini M, Di Giulio P, Gallucci M, Fusco F, Miccinesi G, Paci E, Peruselli C, Morino P, Piazza M, Tamburini M, Toscani F. Quality-of-life evaluation: Whendo terminal cancer patients and health-care providers agree? J Pain Symptom Management 1998; 15(3): 151- 158. Costantini M, Toscani I;, Gallucci M, Brunelli C, Miccinesi G, Tamburini M, Paci E, Di Giulio P, Peruselli C, Higginson IJ, Addington-Hall J, the Italian Cooperative Research Group. Terminal cancer patients and timing of referral to palliative care: A multicenter prospective cohort study. J Pain Symptom Management 1999;18:243-252. Hearn J, Higginson IJ, on behalf of the Palliative Care Core Audit Project Advisory Group. Development and validation of a core outcome measure for palliative care: The Palliative Care Outcome Scale. Qual Health Care 1999;8:219-227. Higginson IJ. Evidence-based palliative care. Br Med J 1999;319:462-463. Higginson IJ. Can professionals improvetheir assessments?JPain Symptom Management 1998;15(3):149-150. Higginson IJ. Clinical and organizational audit in palliative care. Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbookof Palliative Medicine,2nd ed. Oxford: Oxford University Press, 1998, Chap. 2. Higginson IJ. Clinical audit and organizational audit in palliative care. In: Cancer Surveys Volume 21: Palliative Medicine: Problem Areas in Pain and Symptom Management GW Hanks, ed. Cold Spring Harbor, N Y : Cold Spring Harbor Laboratory Press, 1994. Higginson IJ,ed. Clinical Audit inPalliative Care. Oxford: Radcliffe Medical Press, Ltd. 1993. Higginson IJ, Hearn J. Palliativecare audit: Tools, objectives and models for trainTopics in Palliative Care. RK ing in assessment, monitoring and review. In: Portenoy, E Bmera, eds. Oxford: Oxford University Press, 2000, Vol. 4. Peruselli C, Di Giuilo P, ToscaniF, Gallucci M, Brunelli C, Costantini M, Tamburini M, Paci E, Miccinesi G, Addington-HallJ, Higginson IJ. Home palliative care for terminal cancer patients: A survey on the final week of life. Palliative Med 1999;13:233-241. Toscani F, on Behalf of Italian Co-operative Research Group on Palliative Medicine. Classification and staging of terminal cancer patients: Rationale and objectives of a multicentre cohort prospective study and methods used.Support Care Cancer 1996;4:56-60.
Other selected references: Addington-Hall JM, MacDonald LD, Anderson HR, Freeling P. Dying from cancer: The views of bereaved family and friends about the experiences of terminally ill patients. Palliative Med 1991;5:207-214. 163
164 PARTFIVE:SELECTED
BIBLIOGRAPHY
Ahmedzai SH, Hunt J, Keeley V, for the Trent Hospice Audit Group. Palliative Care Core Standards: A Multidisciplina~Approach, 2nd ed. Sheffield, U.K.: Printing Resources, The University of Sheffield,1998. American Geriatrics Society. Measuring quality of care at the end of life: A statement of principles.J Am Geriatr Soc 1997;45:526-527. Bruley DK. Beyond reliability and validity: Analysis of selected quality-of-life instruments for use in palliativecare. J Palliative Med 1999;2(3):299-309. Byock IR, Teno JM, Field MJ, eds. Special sectionon measuring quality of care at life%end. J Pain Symptom Management 1999; 17(2):73- 119. Dunlop RJ, Hockley JM. Hospital-Based Palliative Care Teams: The HospitalInterface, 2nd ed. Oxford: Oxford University Press, 1998. Edmonds PM, Stutt~ordJM, Penny J, Lynch A M , Chamberlain J. Do hospital palliative care teams improve symptom control?Use of a modified STAS as an evalMed 1998;12345-35 1. uation tool. Pall~at~ve Ewing G. Palliative care audit in primary care: County audit. County Audit Report, HealthServicesResearchGroup.Cambridge:Universityof Ca~bridge, 1997. Field MJ, CasselCK, eds. Approaching Death:Improving Care at the End of Life. Accounta~~ity and quality in end-of-life care. Washington, DC: National Academy Press, 1997, Chap. 5. ~istjansonLJ. Indicators of quality of palliative care from a family perspective. J Palliat~veCare 1986; :81 17. Lynn J, Lynch Schuster J, Kabcenell A, Improving Care for llje End of Life: A. Sourcebook for Health Care Managersand Clinicians. NY: Oxford University Press, 2000. Muldoon MF, Barger SD, Flory JD, Manuck SB. What are quality of life measureBr Med J 1998;316:542-545. ments measu~ng? O’Boy-leCA, Waldron D. Quality of lge issues in palliative medicine. J Neurol 1997;244~Sup~l. 4]:SlrS-S25. , Hargreaves R, Monroe €3. Good Practices in Palliative Care: A Psy1Perspective, Aldershot, U.K.: Ashgate Publishing Ltd., 1998. s ~ Evidence ~ ~ g Base. New Robbins M. Evaluating Palliative Care: ~ s t a ~ l i the Uork, Tokyo: Oxford University Press, 1998. . Assessing needs and effectiveness. Is palliative carea special case? In: New Themes in Palliative Care. D Clark, J Hockley, S h e d z a i , eds. Buckingham: Open University Press, 1997, pp. 13-33. ay SIG, ToddCJ.Developing the CambridgepalliativeauditschedRogers : A palliativecareauditforprimaryhealthcareteams. BrJ Gen ule ( Pract 1998;48:1224-1227. Smith N. The impact of terminal illness on the family. Palliative Med 1990;4 (2):127-135. StokesJ, Wyer S, Crossley D. The challengeof evaluating a child bereavement programme. Palliative Med 1997; 1 l(3): 179-190.
“Pediutric Oncology”
01993 Daniel Grogun
This Page Intentionally Left Blank
G
CYNDA HYLTONRUSHTON,DNSc, W,
The Johns Elopkins Children’s Center and Johns Elopkins ~ n i u e ~ s i ~ Baltimore, Maryland
Palliative care for adults is becoming an accepted standard of care. Following the Study to Understand Prognoses and Preferences for Outcomes and ment (SUPPORT’), the issues surrounding end-of-life care became h the realities of dy palliative care asa specialty became recognized.’ Despite this, children and their families remain nearly invisible, Thisofpart ~ n n o ~ a t i o in n sE% oPLife Care focuses on pioneering work to improve the care of dying children and their families. Worldwide, an estimated seven million children and their families could be from hospice and many more from palliative care. In the United States alone, million children are very seriously ill. Each year in America 75,000 to 100, dren die; one third of these deaths are from conditions knownto be ing. In the United States, the largest percentage of children die in ins marily hospitals.Of hospital deaths, the majorityoccur in critical care set less than 1 percent of children needing hospice receive itin the United States? Fortunately, this is not the case acrossthe globe. In England, for example, there about 20 pediatric hospices servingthe unique needs of children and their for clinical care, psychosocial and spiritual support, respite, and bereavement. The barriers to good pediatric palliative care are many and diverse. There are clinical, educational, institutional, regulatory, financial, and attitudinal barriers. prominent barrieris a cultural denialof the of fact that children do die. The inevitability deathinchildhoodshouldinvitehumane andcompassionateresponsesratherthan the stark denial of its existence. However, the injustice of death in childhood instigates deep emotional responses that often lead to behaviors that reinforce denial and prohibit productive dialogue and action. Inhealthcaresettings, the denialand avoidance of death are reinforced because treatment decisions for children with lifelimiting conditions are often fraught with uncertainty, ambiguity, and conflict. No one
168 PEDIATRICPALLIATIVE CARE
“See the Children’s International Projecton Palliative/Hospice Services(ChIPPS): An Interview with Marcia Levetown, MD, pp. 183-193. ““ASpart of an ongoing project based at Education DevelopmentCenter, Inc., in Newton, MA, and funded by The Nathan Curnrnings Foundation, researchers surveyed clinicians’ attitudes, knowledge, and self-reported practice in pediatric palliative care at seven US hospitals and interviewed clinicians and surviving parents of deceased children who had been treated at three of these institutions. For a description of Enhancing Family-Centered Care for Children Living with Life-Threatening Conditions, visit the Center for AppliedEthics and ProfessionalPractice website at ( w . e d c . org/CAE/caeprjov.html).
~ E ~ I A T R PALLIATIVE IC CARE: COMING OF AGE
169
In the United States, regulatory, financial, and service delivery system issues converge to create monumental barriers to palliative and end-of-life care. R barriers arise fromthe limitations that hospice regulations placeon elig services. Specifically,the six-month time frame for terminal illness is problematic in children becausethe trajectory to death is often unpredictable.As a result, referrals often are made when the child is imminently dying rather than earlier, when there is greater potential for positive impact the for child and family. These regulations also have fmancial implications for families who could benefit from essentialpalliativecareandend-of-lifeservices, which are not currently reimbursed. Moreover, systems of care for children with life-threatening conditions are often fragmented and lackcoordi~ation. Pediatric palliative care programs can best meetthe needs of children and families by integrating all aspects of care within unified goals and offering interdisciplinary, holistic services. Ideal models of care for pediatric palliative care will shift the focus away from a rigid demarcation between aggressive and palliative care and honor the synergy that can exist between them. Dr. Ann Goldman’swork in Great Britaint provides an important model for pediatric oncology that can be translated to other settings and systems. In contrast to prevailing practice in the United States, Dr. Goldman’s program is based within a pediatric hematologyoncology department, fully integrates palliative care from the time of diagnosis t h r o ~ ~ h o the u t disease trajectory, manages symptoms, and provides a range of supportive services in coordination with local care providers afterthe child is discharged from the hospital. Althoughthe organi~ationof the health system inthe United Kingdom is quite different from the U.S. system, this model points to the need for better coordination of services across the con ti nu^ of care.
care seaml~ss.In the Un tive care units and establ
ates, the debate about de pediatric hospices versus
170 PEDIATRICPALLIATIVE CARE
provide the needed palliative care and end-of-life services in an era of shrinking human and fiscal resources. The trend in pediatric palliative care to cast the net more broadly means that children with any type of life-threatening condition could benefit from its philosophy and holistic practices throughout the disease process. Anticipating end-oflife and palliative care needs for children with life-threatening conditions would add an important dimension of advance care planning to routine medical care. When combinedwith respite services, hospices for children and their families can provide an important option for palliative and end-of-life care and a larger safety net throughout the disease trajectory. Pediatric palliative care is finally coming of age. The convergence of many national and international forces is propelling individuals, institutions, communities, and fundersto embrace the opportunity to improve care for all children with lifethreatening conditions.
1. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). A controlled trial to improve care for seriously ill hospitalized patients. JRlMA 1995;274:1591-1597. 2 . Children’s Hospice International Publication, 1999. 3. Wolfe J, Grier HE, Mar N, Levin SB, Ellenbogen JM, Slaem-Schatz S, Emanuel EJ, Weeks JC. Symptoms and suffering at the end of life in children with cancer. N EnglJ Med 2000;342:326-333. 4.Children’s Hospice International. Standardsof hospice care for children. Pediatr Nurs 1993;19(3):242-243. 5 . Johnson BH, Jeppson ES, Redburn L. Caring for Children and Families: Guidelines for Hospitals. Bethesda, MI): Association for the Care of Children’s Health, 1992.
An interview with ANN G O L D W , MB, FRCP Great Ormond Street Hospitalfor Children London, England Ann Goldman, MB, FRCP? a palliative care specialist and pediatric oncologist at Great Ormond Street Hospital for Children in ond don, ~ngland, describes the pediatric pa~liativecare program she initiated there 14 years ago. Fully integrated within thepediatric o n c o l o ~ - h e m a t o ~ o ~ d e p a r t ~ e n t , the pediatric palliative care team at Great Ormond Street ~ o s p i t a works l with achild and family fromthe time of diagnosis thro~ghoutthe disease trajectory to manage symptomsandprovide a range of supportive services in coordination with local careproviders gfter the child is dischargedfrom the hospital. Dr. Goldman’sprogram has inspired pediatric palliative care initiatives in the United Kingdom, Canada, Australia, Hong Kong, and other parts of the world. I n the following interview with Karen S. PhD, Dr. Goldman explains how her program developed and what newefforts are underway in England to improve pediatric palliative care.
r: m a t palliative care services are available in Great for children with lije-threatening conditions and their families? n an: PediatricpalliativecareinBritainstartedin the xnid-1980sin two different areas. One was to set up a way to care for children dying from maligthe other was to establish children’s hospices. nant diseasesin oncology units, and In this country, when we say “hospice,”we tend to mean a facility or a building, as opposed to how the word is used inthe United States,where it tends to refer to a service in a much wider sense. In this country, the oncology units were all becoming aware that they needed to focus on children who were not going to get better and to develop the services that would enable child.ren andtheir families to have a choice and to have support and symptom mana~ementin that final stage of life. The oncologycenters set up clinical nurse specialists whose role was to be involved with the children from diagnosis and, particularly, to facilitate home care and palliative care if that were needed. In the whole of the United Kingdom, there are 22 oncology centers, and, since the mid-l980s, each of those 171
172
PEDIATRICPALLIATIVE CARE
has developed some sort of specialist service for palliative care, based inthe oncenter and reaching into the community. However, we have tried to be conscious that it is not just childrenwith cancer who need palliative care but also children with a wide range of diagnoses, such as metabolic and degenerative diseases. Those families were feeling very much in need of more respite care and support than theywere getting. The children’s hospice movement has focused more on the patients in those groups. These are freestanding, charitable hospices.Helen House was the first one, in Oxford, andthere are now 20 around the country. They are small, homelike units with maybe eight beds each-not like a big medical facility-that link with the families, offer respite forboth the children and families,support the parents and siblings, and also do bereavement work. :Is
there any pediatric palliative care provided at home?
AG: The oncology centers are all doing home care, and many local hospitals do,
too. Because our health service is so different from yours, we have always had greater linkagewith and support from providers inthe community because every family has a family doctor. We have always had some form ofcommuni^ nursing services. Over the last ten years, pediatric community nursing, which is quite often linked to a local pediatric unit, also has developed, Our patients come from As a team based in an oncology unit, we work alongquite a wide geographic area. side each patient’s family physician and community nursing service. H: Does that makefor good continuity between what goes on in the hospital and the care provided when patientsgo home? : That’s the idea, but of course it works better in some places than in others, and the services are more complete in some areas and more sparse inothers.
liana nurses,” and how do they fit into this system of care?
INTEGRATING PALLIATIVE A N D CURATIVEAPPROACHES
173
neither of these is a specifically designated or planned location for palliative care. KSH: How many children die in Britain each year who might benefitfrom pal-
liative care services? AG: A good source of this information is a recent report from a joint working party of the Royal College of Pediatrics, which is the British equivalent of the AmericanAcademyofPediatrics,and the AssociationforChildren with LifeThreatening Diseases andtheir Families (ACT), which is a charity.' The working party was interested in developing and integrating services for children who needed palliative care. Until very recently, nobody hadthought about these children as one group because they represent quite a wide spectrum of diagnoses, many of which are rare illnesses, and theyare geographically scattered all about the country. However, we collected what data were available. We reckoned that for every 100,000 children, there were likely to be 100 who had some sort of life-limiting condition at any one time. About halfof those (50 per 100,000) would need active palliative care at any one time. One could expect that each year about 10 per 100,000 children would die from a progressive disorder or a life-threatening conditionof some sort. That excludesacute trauma, which is the most common cause of death for children older than one year, acute infectious diseases like meningitis, and neonatal deaths. Since we published those data in our report, colleagues in Canada and other places have confirmed that their figures are very similar. The working party then defined some categories of children you would expect to need palliative care. We found that there were four groups: one group includes children who have conditions for which curative treatment is possible but may fail; you would think.of cancer in that group. The second group includes children with diseases from which premature death is very likely but for whom long periods of quite intensive treatment can prolong good quality life. This group would include children with cystic fibrosis or muscular dystrophy or even HIV and AIDS, in which quite intensive treatments, including intensive care interventions and even ventilation, might be appropriate at some points during the illness, but ultimately these are diseases that we cannot cure. The third group includes progressive conditions, in which treatment is really palliative from the time of diagnosis, and someof these conditions extend over many, many years. This group includes some of the genetic disorders, some of the mucopolysaccharide disorders, some neurodegenerative diseases, such as Batten's disease or Tay-Sachs disease, and others. The fourth group includes conditions that are not progressive themselves but render the children so mlnerable and susceptible to serious complications that their life expectancies are shortened considerably. Children who have severe cerebral palsy or massive brain damage or other such conditions might be included in this group. It has been quite helpful for people here to define these four groups of children that one needs to be thinking about in planning and developing palliative care services.
174 PEDIATRICPALLIATIVE
CARE
H: What brought you into the palliative care arena, and what is the un-
derlyingphilosophy and model of carethat you have been underta~ingin your own setting? A G I was a pediatric oncologist. Around 1985- 1986, I became aware that, as pe-
diatric oncologists, we spent a lot of time and energy thinking about all the different tumors and what was going to be ournext protocol for lymphomaor rhabdomyosarcoma. m e n children were not going to be cured, we put a lot of time and effortinto caring forthem, but we did not think about it in structured a way. I thought thatwe needed a fewpeople to focus on supportive and palliative care. I was also aware thatthere were families who wanted to look after their children at home, but who did not feel they had adequate support in the community and expertise available to them to be able to do that. To get support for this within the pediatriconcology department, I firstspoke to the seniorpeopleabout whether they would be interested in having a symptom care team. They said, “We to have you.” haven’t got any money, butif you can fiid the money, we’ll be glad So, with a coupleof nursing colleagueswho I knewwere thinking in similar ways, we spent about a year finding a charity that was able to fund us and then came back and set up the team. B H : Once you got funding to set
up a palliative care team, did you face any
barriers in imple~entingthis concept? How was this service received by your oncology colleagues? AG I think it was extremely welcome, actually. People were really very open to the idea and keen to look after the children in an optimum way. I think I have had less difficultythan some of my colleagues, particularly in NorthAmerica. It helped that I was coming fromwithin the unit and had an oncology background myself. It alsohelped that I was not coming inas an attending physician but rather in a position equivalentto a senior resident, so people felt confident that they were still in control of their own patients. After a couple of years, I got promoted to the equivalent of an attending-what we call a consultant here-and by then people felt confident in workingwith me as a palliative care physician. :Do you believe that it is really possible to integrate pal~iative withcureoriented approaches?
AG: Yes, I do. As a team within the oncology unit, we do integrate these approaches insofar aswe meet our patients at the time of diagnosis. Weare not only the symptom care team, we are also the home care team and we share the patients among members of the team according to geographic area. We visit each patient quite soon after he or she is first discharged from the hospital. We also make school visits to help integrate children back into school.We visit the family doctor and whoever else is important and needed in that child’s life, such as the play school or the grandma.
INTEGRATING PALLIATIVE AND CURATIVE APPROACHES 175
KSH: How many people are on your team? AG: There arethree nurses andI, and the secretary who looks after us all, but we
work with the rest of the pediatric oncologydepartment, including social workers and the rest of the nursing and medical team. We are very much a part of things all the way through, and we often have quite a lot of input at t ning with a family to help them get over the hurdle of diagnosis and geti into treatment and back into home life as well. Then,we may take a much lower If the child relapses, howprofile while the child is corning regularly for therapy. ever, the child and family already know us. So, we are often part of discussions with the family and the physician-and perhaps other nurses to whom they feel very close-about what to do next. KSH: How are you introduced to families atthe time of diagnosis?
role described? A G We are called the “symptom care team.” At the beginning, sometimes, we will say we are the “home care team.” Most people don’t take very long to realize exactly what we do, and occasionally families will tell us, “I don’t think we want your help, please. We’ll call you when we want you,” because they infer that our involvementmeans that their childis not going to get better. KSH: At diagnosis and during the period of intensive, cure-oriented treatment, does the symptom care team focusprimarily on the emotional impact of the illness and the psychosocial aspectsof care?
AG: Yes, and we work with the ward team and social workers in this. We might also deal with symptom management if there are particular issues.We serve as a
liaison, coordinating with the local hospitals and the local medical teams. Then, toward the end, if the child is relapsed, heor she may go back onto a little more treatment to prolong good qualityof life if everybody thinks that is a sensible thing to do. We’ll then work much more closely alongside the family in thinking about what might be needed down the road. I think that helping the child and family prepare for what may lie ahead makes a huge &ifference. In oncology it is terribly important, but it is even more important with some of the other diseases and conditions in which the transition to adownward course may be much more blurred. However dif3cult it is in oncology, cancer is a progressivediseasethatoftenmakesits do, markfeltin the endwhateveryou
176 PEDIATRICPALLIATIVE CARE
whereas with someof the other illnesses, the transition is much vaguer and happens over a long period, and it is harder for everybody to see it happening.
think people are a lot more aware than we sometimes give them credit for. Just as children are a lot more aware than we sometimes acknowledge, so are parents. If they are coming regularly to a unit that is looking after children who have a life-threatening disease, they meet other children for whom things are not going well. People may choose to cope by not addressing it at the forefront of their mind because youcan’t always live dayto day if it is in the top of your mind, but most people know it’s there. When you tell some parents, “The disease has come back, and I’m not sure that we’re going to be able to cure it anymore,” they will say, “I’vealways known this was goingto happen.”On the other hand, other parents will say, ‘‘I can’t stop even though you tell me that, and in a way I believe you. But I wouldn’t feel I was being a parent if I didn’t keep fighting.” Everybody’s different, and I suppose one of the things we have to do is try to be flexible. :I
:In a situation in which the child is going downhil~ and the parents have not yet fully accepted this, how do you coordinate your efforts and goals of care with those that ~ontinueto aim fora cure?
ilosophy of palliative care intothe situation even though treating on, which the parents hope and pray may cause a miraf the rest of us think will not occur. All parents are terribly keen to do what they can to avoid their child’s suffering.If their child is having further treatments, but nevertheless has a progressive disease and is uncomfortable, the If the childwillneedpainmanagement. child has a brain tumor, for example, and is becoming less able to do things physically, to speak, see, or hear, or if different parts of the child’s life are being affected, the parents will want helpto manage those aspects of care. What we are trying to do is to help parents see that sometimes, being the very, very best parent-which is what every parent wants to be-does not mean ~ghtingto cure, but fighting to do the best you can for your child’s quality t. It is as though we give people permission to still be a good a very difficult choice.
INTEGRATING PALLIATIVE AND CURATIVE APPROACHES
177
: In your setting, have you encountered any reluctance among your colleagues about discontinuing cure-oriented treatment and moving entirely to treatpalliative care, perhaps because of an unwillingness to acknowled~e that ment has failed and thatthe child is dying?
: There
is always a sense of deep sadness when you cannot cure a child, but e is also a recognition that when that happens, our responsibili~is to do the very best we can forthe child, which may not always be to cure. Some physicians find it harder to let go than other physicians; some families find it harder to let o than other families. There is a great spectrum. On the whole, however, usually able to find a middle ground where everybody comes to much the C * n at much the sametime. that compared to the United States, the choice not to co~tinue curative treatment is made a little bit more easilyhere in England. It varies, obviifferent diseases and different children and different situations, but hink people in the United States would a Tee that we do not use erimental treatment as they do.
there is disagreement among the care p r o v i ~ e r s a ~ ~h~~ o u t is tbe upto do for a c ~ i l ~ - f o example? r beth her to discontinue cureoriente~treatment and provideonly palliative care- ow is that ban~led? :If
care team generally coordinate its ~ e m ~ eofr the s chil~’scare tea e ~ u ~ team e d meetings to review and discuss the goals of care on r
178 PEDIATRICPALLIATIVE CARE
been involved with curative treatment and much more to do with our team and their local carers. :Do you advise and assist the local careproviders, or doesyour team provide home care directly? :We try quite hardto work with people in their local comunities, partly because the children live at wide geographic distances.We cannot possibly offer 24hour on-call care for every child in every emergency situation; it would take us 21/2 hours to get to some of them. So, we work very hardto establish a local support network, and we offer a 24-hour on-calltelephone advisory service for both the families and the local carers. : How
do you measure your success?
*See Measuringthe Quality of Care in Palliative Care Services: An Interview with Irene J. Higginson, B Med Sci, BMBS, FFPHM, PhD, pp. 143-154. 'See Using the STAS in a Palliative Care Unit in Crernona, Italy: An Interview with Franco Toscani, MD, pp. 155-162.
INTEGRATING PALLIATIVE AND CURATIVE APPROACHES
I79
: What do you think might stand in the way of adapting your model of care in other settings? How might it need to be modified? : I do not thinkyou can translate exactly what I’ve done elsewhere. You have to take the principles and apply them withinthe constraints of your own health care system. I know, for example, one of the barriers in the United States has to do with insurance and financing palliative care services,which is easier in Great Britain because we have a National Health Service. : Has the model of pediatric palliative care that you developed at Great Ormond Street been adopted elsewhere in Britain or elsewhere in the world?
AG: In the United Kingdom, all the oncology centers have some sort of pediatric
palliative care system and team; many of these were developing at around the same time as our team. They are not identical to one another, but many have a our particular model is that right lot in common. What is a bit different about from the start we have had the involvement of a physician for whom this is the main interest, whereas the others have worked with the oncologists. In Canada, Stephen Liben, MD, in Montreal, Quebec, and Gerri Frager, MD, in Halifax, Nova Scotia, who both spent some time with us here at Great Ormond Street, took our ideas back home and have developed their own teams. Dr. Liben comes from an intensive care background, so his approach is slightly different, and Dr. Frager comes with a lotof skills inpain and symptom management, which has influenced her approach. Each person, I think, develops his or her own pediatric palliative care program according to his or her own skills and roles in his or her particular health care system. People in Sydney and Brisbane, Australia, also have looked at our model and have gone back and developed whattoseems work for them. Similarly, people from Hong Kong have visited our hospital, and I’ve been over there to have a look with them at how to begin to develop pediatric palliative care services. Therefore, I think the interest in pediatric palliative care and the development of these kindsof services is spreading quite a lot more now. : What more would you like to see happen to improve pediatric palliative care services now? :I’d liketo see what is a reasonably well developed model in oncology hrther develop so that children with other life-threatening illnesses are also being cared for .in a more equitable way-not in the same way because the diseases and the needs are different, but thattheir needs are beingthought about and services are being provided for them. I think that is quite a big and hportant issue. From my point of view, much more physician training needs to be done in this area. In Great Britain, in addition to myself, there is only one other full-time palliative care pediatrician, and one other who does this part-time. The other two are in Cardiff, Wales, and Southampton, England. In addition, there are many pediatricians who provide a great deal of palliative care but without calling it that.
PEDIATRIC PALLIATIVE CARE
We need to make palliative care a real special interest within pediatrics and develop the training programs and structure within our system to accomplish that. We have made quite a bit of progress, in that the first step on the way to being considered a pediatric specialty is for the Royal College of Pediatrics, which governs specialties,to invite youto form a college special interest group. We have done that. We have been given the go-ahead to try to make what was recommended in the report of the joint working groupof the College of Pediatrics and ACT really happen. We have a lot of support for the area of palliative care, but making it a reality when you have to fit it in with all the other things that are needed within a health care servicealways takes a lot longer than you hope because you are queuing up with everyone else to get things done. :Is ~ediatric
~alliative care on medical school agendas in Great ~ r i t a i n ?
ult palliative care has made it to medical school a endas, but this differs on the medicalschool.Ithinkwe’ll be ableworktowardgetting ediatrics into agendas by perhaps persuading some of the people who are involved in writin the professional exminations to include questions on pediatric ~edicine,We have already broached that, and they are happy to do it.
a ~ your d colleagues been ork kin^ on any s t a ~ ~ aor r ~quals r pediatric ~alliativecare that could be used as b e n ~ h ~ a r k s
ver the whole country, Inadth a number of local areas to try to de-
~ a ~th o i r~ g you s have learned from the process of meata palliative care p r o g r a for ~ ~ ~ ~with l c ~a ~ cr e ~e ? ~ ent on one person’s skills; it is
INTEGRATING PALLIATIVE AND CURATIVE APPROACHES
181
1. Association for Children with Life-Threatening or Terminal Conditions andTheir Families and the Royal College of Paediatrics and Child Health. A Guide to the Develop-
ment of Children’s Palliative Care Services, 1997. To order this publication online, visit (www.act.org.uk/actwebnew/publications.htm).
This Page Intentionally Left Blank
An Interview with
CIA. LEVETOWN, MI>
University of Texas Medical Branch Galveston,Texas ~ a r c i aLevetown, MD, a specialist in pediatric patliative m~dicine atthe University of Texas Medical Branch at Galveston, is a founder of ChIPPS and chair of its wor~groupon Administrative and Policy Issues. I n the following edited comments from aninterview conducted by Anna I;. Romer, EdD, Dr. Levetown describes the goals and current activities of C b I P ~ San , internationa~project designed to improve pediatric palliative care around the globe. r: When was the Children's International Project on ~atliative/ spice Services ~ C h I started? ~ ~ S ~ I came up with the idea in about 1994. My experience works of children with ~e-threateningillness led meto realize that such families meet a medical and service delivery system that is not well set up to care effectively for their children. Services are fragmented and often unresponsive to the particular needs of this small but important group. Other leaders in pediatric palliative careconcurred. At the same time, we all felt thatthere was a growing knowledge base the in field of pediatric palliative and hospice care that it is d8ficult to do research on such a small was not well disseminated. Finally, as population while holding to rigorous, evidence-based methods, making further progress in the field required collaboration among centers and inte~ationalcolleagues. It was a wish to address these problems that spawned this project. : What were
the goals of this project?
: There were several goals that emerged directly out of the problems that brought us together. The first wasto create an international communi^ of pediatric palliative care practitioners and scientists because many of us are working in very isolated situations and do not have contactwith one another. A second substantive goal wasto create a basic manual for hospices andother palliative care programs seeking to reach out to children. We wanted to give such programs concrete i~ormationabout how to render care to these children. For 183
184 PEDIATRICPALLIATIVE CARE
example, this manual will enable a rural hospice that serves only adults to feel comfortable and prepared to care for a child in his or her home. Otherwise, a family’s only option is for the child to be far away in a children’s hospital during the time of his or her death. In the manual, we are providing intake forms, ongoing assessment tools, medication protocols, demographic i~ormation,and information about grief and its management, bereavement issues, and spiritual issues. It is a “how-to”of pediatric palliative care. It will also provide templates for different kinds of programs. One example is atthe San Diego Hospice in California, which has a perinatal bereavement program for intrauterine and postpartum loss. We are tryingto present a rangeof good examples of what is out there. The manual is international in scope, so we describe models from Canada, Australia, Greece, and Poland,as well as the United States. A third objective of ChIPPS was to create a research consortium and to agree among one another what the major gaps in the knowledge base about pediatric palliative carewere and to form work groups to close those gaps through research. : who funded
the project?
MIL: The project was funded in 1998, under the umbrella of the National Hospice the Arthur VinOrganization (NHO).* Support forthe project came primarily from
ing Davis Foundation and The Robert WoodJohnson Foundation, with additional significant support from Anesta Corporation, Purdue Frederick and RoxaneLaboratories, Inc. In November 1998, we held an initial 2-day conclave of 35 professionals from a range of disciplines and around the world, all of whom were dedicated to the care of children living with life-threatening conditions. :How didyou recruit the people who are involved in this project, and who attended the first conclave?
MIL: In 1996, I gathered together a steering committee, which at that time included Ann Goldman, MB, FRCP, from England, a pediatric oncologist; Stephen Liben, MD, from Montreal, Canada, a pediatric intensivist; Betty Davies, EN, PhD,
whose specialty is bereavement, based in British Columbia, Canada at that time; and KateFaukner, MD, a pediatric oncologist/hospice physician from the Boston, Massachusetts, area. Wethen sought funding and an organization to host the project. Galen Miller, PhD,then vice president of research and education at the NHO, encouraged that organizationto take our project under its wing. Susan Buckley, EN, MS, technical assistance specialist at NHO, became the staff liaison to the project. In August 1998, following Dr. Miller’s departure from NHO, Stephen Connor, PhD, was hired as the new vice president of research and professional development. Dr. Connor attended the conclave, participated inthe Administration andPolicyworkgroup,andmaintainsoverallresponsibilityfor the ChIPPS project. *The NHO has recently been renamed the National Hospice and Palliative Care Organization.
CHILDREN’S INTERNATIONAL PROJECT ON PALLIATIVE/HOSPICE SERVICES
The participantswere chosen in advanceof the conc steering committee. The criteria were that the perso be dedicated to the advancement of the field of pediatric palliative care, with a track record anda willingness to invest in the future. In addition,we paid attention to field of expertis and country of origin, hoping to get the best distribution possible.We included administrators,nurses,physicians,psychologists,ethicists,social workers, bereavement counselors, and chaplains. Several bereavedparents, many of them professionally involved in the field, are members of the group. One member was a bereavement camp organizer and involved with Candlelighters Canada, asupport group for bereaved parents? The project convened people from man^ parts of the world, including Europe, Central Arnerica, Australia, the United States,~anada, and Mexico. However, there was much greater representation from North Arnerica than from other countries, and we did not have anybody fromthe continents of Africa and Asia. Even so, it was quite a multiethnicgroup, and we tried to be as broad as possible with regard to both discipline and geographic location. Once at the conclave, we used the Delphi technique, a consensus method widely used in health research,to choose the subject areas that would f o m the foundation of the work groups and direct their efforts to cover the gaps.*Marcia L MSW, LPC, was the facilitator of the conclave and has been wo steering Committee in this role ever since the conclave. :
at benefit did you see to convening ~ e o p l ~ d~ferent ~ r o ~ co~ntries to
work together on pediatric ~alliativecare? ed to verQ our perceptions of what might be universal needs in t child with a life-threatening condition and some principles of of one’s access to resources.Inc people liativecarethatapplyregardless who areworkingindifferentsettingswas one way to validate the ons we were hoping to make, and we did get that validation.We also wanted to consider a variety of models. Many times, in the literature, people are very prescriptive about things that become very impractical.We wanted to be more inclusive and universal in the way that we made recommendations. It was challengin up with something that would be universally applicable becauseof resource differentials. : What kindsof things have you learned byincluding cliniciansfrom other countries?
ML: To some extent, we have learned thatexperiences that many of us have wit-
nessed in our own setting are not unusual.For example, the experiences of fam$For more information, visit(wmv.candlelighters.ca). *The Delphi consensus building process has been described extensively inthe social science and health services literature.A s m w of the process, with referencesto other articles, may be foundin: Jones J, Hunter D. Using the Delphi and nominal group techniques in health services research. In: PopeC , Mays N, eds. QuuZitutive Research in HeuZth Cure, 2nd ed. London: BMJ Books, 2000, Chap. 5 .
186 PEDIATRICPALLIATIVE CARE
ilies and children feeling abandoned and of health care professionals never acknowledging death in children and things likethat. On the other hand, the ways medical decisions are made may differ accordingto culture. For example, inmany European countries, there is a very paternalistic viewpoint about how to reach conclusions about the goals of medical care. In addition, we found that there is extremely limited access to pain-relieving medications in certain settings. That fact should spur us on to take some international initiatives to push for broader access to these medications and forbetter education of government regulators. We have not yet taken that initkative, however. : $?Thathas
resulted from the Dallas conclave so far?
L: The m e d i a t e outcome of this initial meeting was that we began workon the manual, or compendium, of best practices in pediatric palliative care and the creation of topic-focused work groups to investigate agreed-upon research priorities. We came up with some universal principles of pediatric palliative care. They will be included in the compendium, which is still undergoing revisions.We are also hoping to do an international research project. Our efforts to develop a model forpediatricpalliativecarewillbenefit people incountries where clinicians haven’t even considered the topic of pediatric palliative care. We think that we are providing internationally useful i~ormation.However, we have not addressed such enormous ethical and global issuesas the impact of AIDS in Africa on children and families there. : What are
the priority areas for research that ChIPPS has identified?
: Through the
Delphi process,we divided up into five workgroups atour conclave. We agreedon the major areas in which there are problems, and then within the workgroups, members decided what their major priorities were. The five workgroups arethe Administrative Policy workgroup,of which I am the chair; the Education workgroup, chairedby Danai Papadatou, PhD, from Athens, Greece; the Ethics subgroup, which Dr. Liben and Myra Bluebond-Langner, PhD, are leading; the Clinical Care group, initially led by Dr. Faulkner; and the Psycho-Social Bereavement and Spiritual Caregroup, chaired by Dr. Davies. Within the Administrative Policy group, our goal was to do a literature review of the models that work. We are identeing the elements that must be incorporated within a program because they have been demonstrated to be useful and cost effective, as well as outlining what has been foundto be irnpractical.We also are identeing what is unknown. Rased on that literature review, we will create a template as a starting point for any demonstration projector program development. The idea is to say, “You’ve got to do this, and you shouldn’t do that, and these are the things you can play around with, but don’t reinvent the wheel.” Right now, we are in the middle of the literature review, which will ultimately lead to the template. The major priority of the Ethics group was to look at why the internationa~y agreed-upon and endorsed suggestions about medical decision making for chil-
CHILDREN’S INTERNATIONAL PROJECT O N PALLIATIVE/HOSPICE SERVICES 187
dren are not put into practice.lm5To answer this question,Dr. Bluebond-Langner and Dr. Goldman are embarking on a binational research project at two sites, Children’s Hospitalof Philadelphia and the Great Ormond Street Hospital in London, England. Their plan isto witness the decision-making process and family meeting discussions while they are occurring andthen to debrief with the child, the parents, and the medical care providers about what they thought happened, what they wished hadhappened, what was good about whathappened, and how they might have wanted it to have been different. The goal of the research is to explore whether the recommendations for ethical practice and end-of-life decision making that have been put forward are consistent with what those actually involved in making such decisions want and need. Part of what Dr. Bluebond-Langner is going to be looking at is how the compensation for care and philosophic differences impact decision making. I think they are working with a broader construct of palliative care in England than in the United States. Even though it is a very technologically and economicallySUCcessful society, professional caregivers in England seem to accept and acknowledge that children may die, more than professionals do here in the United States. It’s beendocumentedprettywellin the neonataldecision-makingliteraturethat our country is very off the mark with regard to how we come to conclusions about whether or not someone is salvageable or whether or not quality of life issues factor into decision making. In my experience, care providers in the United States are way off the scale in the direction of “save everyone regardless of quality of life and regardlessof peoples’ priorities.” The Clinical Care group is looking at how to assess pain in the nonverbal, often neurodevelopmentally disabled child. They also wantedto look at creating a quarterly peer-reviewed newsletterwith updated information, and ultimately they would like to have a journal. The Educationgroup wanted to create a curriculum that could be implemented at any of the professional disciplines’ schoolsto facilitate better and more knowledgeable careof children with life-threatening conditions.At this point, this group has drafted an outline of a curriculum. Finally, the Psycho-Social Bereavement and Spiritual Care group is going to do a project under the direction of J. William Worden, PhD, to look at men’s grief, which we don’t understand how to handle very well. They also have a separate project to create spiritual assessment tools, ledby Liz Sumner, RI?, BSN, and Paul Bremer, MDiv. Most of the products we are workingon are still in process. However, the Ethics group has posted an extensive bibliographyon the ChIPPS website.I I I
‘The ChIPPS site is located on the NHO website at ( ~ . n h o . o r g / c ~ p p s b i b s u ~ . h t ~ ) .
PEDIATRIC PALLIATIVE CARE
ere is the ~ h ~ ~ ~ S ph eraod e~~now? e ~ t ad hoped to present our fiidings sometime in the middle of next year conference. We wouldbe resenting ourrmationandinvitin ranks with us to continue to improve pediatric pallia ere may need to be revisions over time to the compendium, but ba want to create a comunity that has access to one other and can learn fromone another and also conduct research. An ongoing problem has been money. Because the in United States, fewer than 100,000 children dieeach year, comparedwith 2.5 million adults, many funders, even some prominent palliative care experts who are developi prove the care of dying adults, believe that putt in^ money into tive care for children isa waste. b o n g the few exceptions arethe initial funin New York, which is supders of ChIPPS and The NathanC ~ m i n gFoundation s porting another project I am involved in as a coinvestigator, a national projectto enhance family-centered pediatric palliative care, based at Education~evelopment Center, Inc., in Newton, Massachusetts.~ :Are you
re of other in~ernu~ional effor~s to convene health care pro-
tric care? fe§sionals to i ~ p r o v e p e d ~ apalliative rldHealth ~rganization convenedagroup of ex erts diatric pa~iativecare. are in Children, was published D e n t , but it is not an rnational Society for th in England this summer, in June 2000. Dr. oldm man was the , so alth~ughthe meeting focused on pain in general, it ina bit of pa~iativecare as well. In the United States, the Pediatrics came out with a position statement on pediatric palliative
:Are there ~ o ~ eofl care § in other countries hat you woul~ point to as excep~ional or innovu~ive? : The Canuck Place in Vancouver, Canada, sponsored by
the Vancouver ice
, opened in 1995. Canuck Place is the sole, freest and in^ pediatric hospice in North erica. They renovated a historic 10,000 square foot home to be a pediatric hospice. In England,pediatric palliative care and hospicepretty are well-developed.~ They have 20 freestanding hospice homes for children, who are eligible to come in "or a description of Enhancing Family-Centered Care for Children Living with a Life-Threatening Conditions,pleasevisit the Center forAppliedEthicsandProfessionalPractice website at (m.edc.org/CM/caepjov.html). *See Integrating Palliative and Curative Approaches in the Care of Children with Life-Threatening Illnesses An Interview with Ann Goldman, MB, FRCP, pp. 1'71-181.
CHILDREN’S INTERNATIONAL PROJECT ON PALLIATIVE/HOSPICE SERVICES 189
from the time of diagnosis. The hospices are used primarily as respite, and children can come inas often as they want. The child can even call make and a reservation to come in. Those central locations serve asthe hub for visiting nurse operations andother sorts of things. Thereis one pediatric hospice home in England that is specifically for babies. Two other participants inthe ChIPPS conclave, Michael Stevens, and John Collins, MB, BS, FRCP, from Sydney, Australia, are esta pediatric hospice program in Australia, calledBear Cottage. To PhD, another ChIPPS participant from Warsaw, Poland, is head of palliative care atthe National Research Institute on Mother and Child in Poland. He directs the Warsaw Hospice for Children. Children haveto be imminently dying to qua@ to be there or have social problems that would prevent them from being cared for at home or be so far away from their home visitation staff that there would be no way to accommodate the needs of the child and Dr. Dangel also established a visiting pediatric hospice program i As far as other innovative programs,the very large hospices in the United States have open-door policies for children to be admitted. These include The Hospice of the Florida Suncoast,”“ Hospice Atlanta, and Buffalo Hospice. Some ofthese exI know that The tremely large programs have very good pediatric programs. pice of the Florida Suncoast is aboutto open two inpatient pediatric-specific pice units. Stacy Orloff, MSW, LCSW, a participant in the ChIPPS conclave, is in charge of that program. The problem is that the U.S. Office of the Inspector General is challenging any program that has what used to be called “bridge programs”-hybrid programs where patients are admitted for hospice care who do not fit the Medicare hospice benefit criteria. With regard to neonatal and perinatal hospice care, s. Sumner, at SanDiego Hospice, has a perinatal grief programwhich in she talks with women with threatened loss of pregnancy due to congenital defects or other major problems and helps the parents and familywith anticipatory grief. The program also intervenes when there is an unanticipated loss orwhen the babies survive the birth but are going to die shortly thereafter. My own program, The Butterfly Program at University of Texas, Galveston, is unique in that it offers a private, homelike space care setting where families can be with the dying child who may special equipment or machines. Our specially designed Butterfly tion, oxygen, and ventilator hookups available, butit also has a living room area, and a TV, NintendoTM, VCR, and a little kitchenette area with a coffee maker and microwave. It is a place for a familyto be together. We have had small children who were siblings up there without any restrictions. If the family wanted to bring a dog, we would have no problem with animals. We have had prayer vigils with whole congregations when a child was born who was never going to leave the hospital. They had come to embrace the child in their congregation and have a **For a brief description of the bereavement services offered for children through The Hospice of the Florida Suncoast,please refer to Appendix A, pp. 239-241. For further information on the hospice, grief, and bereavement services offered by The Hospice of the Florida Suncoast, see (www.thehospice.com).
90
PEDIATRICPALLIATIVE CARE
prayer session and then take their leave of the child. And we prepare the family for what they are goingto see. We assist them in carrying out their own rituals, whatever those might be.We see this space as a way to make the transition from the “child as patient” back to being the family’s child again. In this way, family members regain complete control and “ownership”of their child. : r f you thin^ about implementing a more integrated palliative care service that begins at diagnosis, such as Dr. Goldman describes in the Featured ~nnovation, what would the major barriers be to adapting such a model in the ~ n i t e dStates?
L: We would have to change our regulations-the rules that govern who has access to hospice. Money and reimbursementstmctures shape treatment decisions. If it’s not reimbursed, health care providers and institutions won’t do it. We need a system that rewards greater integrationof care. Our culture of treatment, “fighting to the end,” would also haveto change if we were to try to integrate a palliative team into treatment from the point of diagnosis. : Can you say more about how regulatory and reimbursement structures i m p e ~ ethe best palliative care in the United States? : In the United States, care is fragmented.For example, some bereavementinte~entionsmay help the family so that the family will havefewer psychosomatic illnesses and come for less medical care later on. Unaddressed grief can manifest itself as physical pain. Bereavement care might be cost effective and wise inthe long mn. In the United States, outsideof hospice, where bereavement care is bundled into the ~enefit,the payer for the child does not pay for what happens to the bereaved parents, other adults, or the siblings. So, it is not an easy sell to say, this on your ticket, on your tab,” because that insurer may not er. This lack of interdigitation of the pockets of money and responsibili~leads to many problems. These re~bursementissues can have longstanding consequences. For instance, a needlestick for a child costs as much as $2.50, but providing local anesthesia for the $2.50 is not additionally reimbursable, nor is the additional time needed to provide this care. Thus, many hospitals and clinics won’t do it because it’s not cost effective. On the other hand, the unrealized cost is that the same unanesthetized child, as an adult, may choose not to pursue appropriate preventive, diagnostic, andtherapeutic medical care becausehe is afraid of needles. In his perception, the hurt is disproportionate to the benefit. What is the cost now, and
to make ere inthe United States,the Medicare hospice benefit requires families
CHILDREN’S INTERNATIONAL PROJECT ON PALLIATIVE/HOSPICE SERVICES 191
choices they may not be ready to make. For instance, dietary supplementation is not something that is eligible for reirnbursernent under the Medicare hospice benefit. So, when these kids are fed using a gastrointestinal feeding tube, they may be willing and able to forgo it within a very protective and supportive context, but until they get into a setting where that type of open dialogue and conversation can happen, they won’t forgo it. Thus, that child and family would not sign up for hospice andas a result, in mostU.S. settings, would not have access to palliative care. Another point that most palliative care services do not address, in the United States or elsewhere, is the lack of bereavement care for families when children die of trauma. In our setting, the problem is connected to the Medicare hospice benefit. In the United States,88 percent of children who die at ages greater than one year die of trauma. Under the current hospice regulations,the reimbursement for bereavement care is bundled into the actual hospicedays of the patient. If the child was not already signedup for hospicewhen he or she died, the family cannot access any of the bereavement benefits. For example, when a family loses a he’s been hit child suddenly, within 24 hours-he was a healthy kid yesterday, by a bus, and now he’s dead-the grief, trauma, and bereavement are very cornplicated. But there is no reirnbursernent structure to provide bereavement care for this family that is now in extremis. However, even inother countries, where regulations differ, most palliative care services do not reach outto Families where children die unexpected, sudden deaths. :W a t are the universal challen~esfacingpediatricpalliativec a ~providers e right now?
ML: Health care providers need to offer the o p p o r t ~ ~to n ido ~ concurrent palliative care and life-prolonging care. Otherwise, their efforts to offer palliative care will fail. Familiesdon’t want to give up, or they don’t want to be perceived as giving up, and they don’t want to be perceived as notlovingtheirchildren-forall these reasonstheywill not forgo life-prolonging therapy until the very end. If families are forced to choose between life-prolonging treatment and palliative care, the child and the family miss out on a lot. They need to know that they can get pain relief while they are getting life-prolonging therapy. In my view, the child and family need the social support, the attention to symptom management, andthe life-prolonging care as long as that is valued. The big problem is getting away from
192
PEDIATRICPALLIATIVE CARE
what has been the cancer/adult-based hospice model. I think this separation between palliative care andl~e-prolongingcare is one key barrier becauseof the unneed to fight to the end!” And fighting to the end is derlyingpsychology, to that, but it needs to be in a permissive fine. I don’t actually h ny objection atmosphere where people know that if the treatment seems unduly burdensome, . This problem may be more accentuated in the United States than elsewhere, as Dr. Goldman suggests. An article was just published in the New England Journal of Medicine that e ma~agementof symptoms atthe end of life for pediatric cancer patients in a single institution.^ The authors found that these children had excruciating pain that was totally unaddressed, other and symptoms, suchas fatigue, were ell addressed.I think that some of the major challenges facing peoric palliative care arethe recognition of pain andother symptoms and l ~ o w best to treat them in children. Over the years, children have been“proa ulation,” so very few studies were done on them, and we don’t h o w how these drugs affect kids. We don’t sufficiently h o w the pharmacodynamics or the side effects. We don’t know better alternatives. We h o w nothing about these drugs in children. Recently, President Clinton and the Food and Drug Administration (FDA) issued a mandate to start including children in studies and also so that to go back and relabel some drugs that are frequently used for children we can use them safely and effectively. This is another big issue: What isthe best care? We don’t know right now-we are just flying by the seat of our pants. We have been are using e~trapolationsfrom adult data, and we know from drugs that studied forkids that adult data do not necessarily apply, itand is a dangerous practice. Last, I t h i it~ is porta ant for us to recognize and understandthe potential for devastation of a familyfinanciallybutalso,moreimportantly,psychosocially througho~ttheir fetimes. The potential is huge. I’ll give you an example. I gave a talk in 1994 about pediatric palliative careatanAcademyofHospicePhysiciansmeeting.Afterward,a70-year-old gentleman cameup to me and said, “You know, I’d liketo donate a beach house I have in. South Carolina to be a pediatric I responded, palliativecarehome. “That’s an awfblly generous offer. Can you tell me what motivates you to be so generous?”He told me, “Well, I’m a retired plastic surgeon, and I’m a part-time volunteer medical director and beenhave for about four months now, but the reason I’d liketo donate my home-well, can to h o w about him.”He said, I tell you aboutmy son?”So, I replied, “Yes, I’d like “Well, I don’t reallyh o w what to say, but could I show you his picture?’’I said, to see his picture.” He pulls out his wallet-and this man has one picis wallet, an old brown picture of a three-year-old boy.I asked, “Did you ever grieve your loss?”h d he said, “No. I never had time to do it.” I told him, “‘You know, it’s never too late.” I wrote him a note immediately following the “
”
CHILDREN’S INTERNATIONAL PROJECT ON PALLIATIVE/HOSPICE SERVICES 193
meeting, saying, “I’m really serious. You really need to take the time to grieve your son’s loss.” He wrote me back about two weeks later, andhe said, “I did as you recommended, andI want you to know that I’ve just spent three hours in a room, alone with my 30-year-old daughter, for the first time enjoying being in a room alone with my daughter.” This girl losther father at the same time she lost her brother, and I imagineher doctor. How many mother losther husband and his patients lost a compassionate life-years of suffering did his lack of grieving cause? I think we really needto learn how to intervene so that this kind of destructive m~tipliereffect at the loss of a child does not happen. We do not know all that we need to know about what’s effective, but we need to find out because those yearsof suffering are just unac-
1. Committee on Bioethics, American Academyof Pediatrics. Guidelineson forgoing life-
sustaining medical treatment. Pediatrics 1994;93(3):532-536. 2. Bioethics Committee, Canadian Paediatric Society. Can Med AssocJ 1986; 135:447-448. 3. Caplan, A, Cohen C. Imperiled newborns. Hastings Cent Rep 1987;17(6):5-32.
4. President’s Commissionfor the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.M a ~ i n ~ HCare e ~ l Decisions. th Washington, DC, GPO (Government publish^^ Office), 1982. 5. President’s Commissionfor the Study- of Ethical Problemsin Medicine and Biomedical ehavioral Research. Deciding to Forego L~e-Bxtending~ r e a t ~ e nWashington, t, DC, GPO (Government Publishing Office), 1983. 6. WorldHealthOrganization. Cancer Pain Relief and Palliative Care in Children. Geneva, Switzerland: World Health Organization, 1998. 7. American Academyof Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative Care for Children (REOOO7). Pediatrics 2000; 106(2):351-357. 8. Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Slaem-SchatzS, Emanuel EJ, Weeks JC. Symptoms and suffering at the end of life in children with cancer. N Bngl J &fed 2000;342(5):326-333.
e
Anand KJS, McGrath PJ, Finley GA, Schechter NL, Levetown M. Pain in infancy and childhood. Ann Nestle 1999;57(1):1-37. Goldman A, ed. Care of the Dying Child, 2nd ed. London: Oxford University Press, 1998. Goldman A. ABC of palliativecare.Specialproblems of children. Br Med J 1998;316:49-52. Goldman A. Palliative care for children.Palliative Med 1995;9(3): 179-180. with their Goldman A, Christie D. Children with cancer talk about their own death families. Pediatr Hematol Oncol 1993; 10(3):223-23 1. Hunt A, Joel S, Dick G, Goldman A. Population phamacokinetics of oral morphine and its glucuronides in children receiving morphine as immediate-release liquid J Pediatr 1999; 135(1):47-55. or sustained-release tablets for cancer pain. J Palliative Care Levetown M. Ethicalaspects of pediatricpalliativecare. 1996; 12(3):?5-39. Levetown M. Different-And needing to be more available. Hospice 1995; 15,16,36. Levetown M, Pollack MM, Cuerdon 'I", Ruttimann UE, Glover JJ. Limitations and withdrawals of medicine in pediatric critical care.JiIZkL4 1994;272: 1271-1275. Liben S, Goldman A. Home care for children with life-threatening illness.J Palliative Care 1998;14(3):33-38. Rushton CH. Bridging the tensions between care and cure. In: Pediatric EthicsFrom Princ~~les to Practice. RC Cassidy, AR Fleischann, eds. The Netherlands: Harwood Academic Publishers, 1996, Chap. 10. Rushton CH, Glover JJ. Involving parents in decisions to forego life-sustaining treatment for critically ill infants and children. AACN Clin Issues Crit Care Nurs 1990;1(1):206-214. Rushton CH, Lynch ME. Dealing with advance directives for critically ill adolescents. Critical Care Nurse 1992;12(5):31-37.
ACT and RCPCH. A Guide to the Development of Children's Palliative Care Ser-
vices. Report of joint working party ofACT (Association for Childrenwith Lifethreatening or Terminal Conditions andtheir Families) and RCPCH (Royal College of Paediatrics and Child Health). Bristol, U.K. Association for Childrenwith Life-Threatening or Terminal Conditions and Their Families, January 1997. Armstrong-DaileyA, Zarbock GoltzerS, eds. Hospice Carefor Children. New York: Oxford University Press, 1993. Black D. Coping with loss: The dying child.Br MedJ 1998;316:1376-1378. M. In the Shadow of Illness: Parentsand Siblings of the Chron~1uebond"Lan~ner ically Ill Child, Princeton, NJ: Princeton University Press, 2000. 194
PART SIX: SELECTED BIBLIOGRAPHY 195
Bluebond-Langner M. The Private ~ o r l dosf Dying Children.Princeton, NJ: Princeton University Press, 1978. Bodfet E, Zucchinelli V, Costanzo P, Blanchard P. Schooling as part of palliative care in paediatric oncology.Palliative Med 1997: 133- 139. Cassel CK, Foley KM. Principlesfor Care of Patients at the End of Life: An Emerging Consensus Among the Specialties of Medicine. New York: Millbank Memorial Fund, 1999. Cassidy RC. A time to die: Ethical, legal and professional grounds for judgement. In: Pediatric Ethics-From Principles to Practice. RC Cassidy, AR Fleischmann, eds. The Netherlands: Hamood Academic Publishers, 1996, pp, 15-35. Cassidy RC, Fleischman A R , eds. Pediatric Ethics-Prom Principles to Practice. The Netherlands: Hamood Academic Publishers, 1996. Children’s Hospice International.1998 Survey: Hospice Carefor Children: Executive SummaryReport. Alexandria, VA: Children’s Hospice International, 1998. perspective (ethics). Eur J PalDangel T. Paediatric palliative care-A personal liative Care 1998;5(3):86-91. Dokken DL, Sydnor-Greenberg N. Helpingfamiliesmobilizetheirpersonalresources. Pediatr Nurs 1998;24(1):66-69. Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine, 2nd ed. Oxford: Oxford University Press, 1998, pp. 1013-1120. Dunlop RJ, Hockley JM, eds. Hospital-Based Palliative Care Teams: ?be Hospital-Hospice Interface. End-of-Life Carefor Children and Their Families: Ethical Dimensions: Glaxo Wellcome, Inc. 1997. . Pediatric hospice reference library. Am J Hospice Palliative Care 1997; 14(5):228-230. Finley GA. Paediatricpain: A yearinreview. Czdrr Opin Anaesthesiol 1998; 11:295”99. Finley GA, McGrath PJ, eds. Chronic and recurrent pain in children and adolescents. Progress in Pain Research and Management. Seattle: IASP Press, 1999, Vol.13. children. Progress Finley GA, McGrath PJ, eds. Measurement of pain in infants and in Pain Research and Management. Seattle: IASP Press, 1998, Vol. 10. Fleischman AR. Commentary: Ethical issuesin pediatric pain management and terminal sedation.J Pain Symptom Management 1998;15: 260. Frager G. Palliative care and terminal care of children. Child Adolesc Psychiatr Clin North Am 1997;6:889-909. Homer CJ, Marino €3,Cleary PD, Alpert HR, Smith B, Crowley Ganser CM, Bmstowicz RM, Goldmann DA. Quality of care at a children’s hospital: The parent’s perspective. Arch Pediatr AdolescMed 1999;153(11):1123-1129. Hospice. Special pediatrics issue. 1998;9(1). Hostler SL, ed. Fami~-CenteredCare: An Approach to Implementation. Charlottesville, VA: The Universityof Virginia, Children’s Medical Center, Kluge Children’s Rehabilitation Center, 1994. Huddleston D, Alexander R. Communicating in end-of-life care. Caring 1999;18 (2): 16- 18, 20. Johnson BH, Jeppson ES, Redburn L. Caring for Children and Families: Guide-
196 PART SIX: SELECTED BIBLIOGRAPHY
da, MD: Association forthe Care of Children’s Health, pecial thematic issue: When children have to die: PeRefractory symptoms and terminal sedationof children: Ethctical management.J Palliat~veCare 1996; 12(3):40-45. Zucker LUX.Do not resuscitate orders in a children’s hos1993;21(1):52-55. care for children-Part 1: The institution of
artinson I. An international perspective on palliative care for children. J Palliative Care 1996;12(3):13-15. Res 1995;13:195-214. J, an I)ongen-Me~an , Chesler MA. GuideA report of the SIOP cology. Med Pediatr n families and st& ee on psychosocial issues in pediatric onchildren and grievryone’s practice. nd ~dolescents.
conference on
~ r m f u o~f sTime: me Psychological Bxperienceof the Child with a
ten in^ Illness. Pittsburgh: University of Pittsburgh Press, 1995. Spinetta JJ, Jankovic M, Eden T, Green I), Martins AG, Wandzura C, Wilbur J, Masera G . Gui~elinesfor assistance to siblings of children with cancer: Report orking Committee on psychosocial issues in pediatric oncology. Med ~ e ~ iOncol ~ t r1999;33(4):395-398. diatric hospice nursing:Making the most of each moment. M, Quiggins DJL7 Friedman-BenderA, The American Cancer Society. The pediatric cancer quality of life inventory32 (PCQL-32). Cancer 1998;8~(6):1184-1196. Vickers JL, Carlise C , Choices and control: Parental experiences in pediatric terminal home care.J Pediatr Oncol Nurs 2000;17( 1):12-2 1.
PART SIX: SELECTED BIBLIOGRAPHY 197
Weir RF, Peters C. Mfirming the decisions adolescents make about life and death. Hustings Cent Rep 1997;27(6):29-40. ~ithholdingor ~ i t h ~ r a w i Life n g SavingTreatment in Children-A Framework for Practice. London: Royal College of Paediatrics and Child Health, 1997. Wolfe J, Grier HE, Mar N, Levin SB, Ellenbogen JM, Slaem-Schatz S, Emanuel EJ, Weeks JC. Symptoms and suffering at the end of life in children. with cancer. N BnglJ &fed2000;342:326-333. World Health Organization.Cancer Pain Relief and Palliative Care in Children. Geneva, Switzerland: World Health Organization, 1998.
This Page Intentionally Left Blank
This Page Intentionally Left Blank
LAURENCE J. O’CONNELL, PhD, STD
Park Ridge Center for the Study of ~ e a Z t ~ , ~ a i t h a n Chicago, ~ ~ ~ i n o i s
At the present moment, “Spirit array of concerns and initiat and well-being of patients, pa~icul grating s p i ~ t u a l iusually ~, the dom phers, with health care, the domain of biomedically trained clinician inju~es,as marily on the physicalbodyanditsdiseasesand psychological dimensions of illness, ern societies. The history of Weste
Yet, even as health care and spirituali~ rate d o ~ a i n sin many ~ ~ s tc ~ r n
questions concerningthe me pose of one’s life) the meaning uld they play in elicit^^ and attemptto meet the s p i ~ t needs u ~ of their patients? For some patients, the sacred is ex-
202
SPIRITUALITY IN END-OF-LIFECARE
In some modern societies, spirituality and religion may remain more integrated into health care than in the United States becauseof either a more homogeneous population and culture, as in present-day Poland or Ireland, or where spirituality in general, even though manifested through a multitude of faiths, is more central to all aspects of life, as in India. In such settings, it may be easier and more natural to integrate spiritual care of patients into health care because it is already well integrated into many aspects of daily life. However, in the United States, where we have a Constitutional separation of church and state and an espoused belief in the respect for differences in religious belief, it has beena challenge to integrate spiritual care into healthcare, especially when operating within a secular institution. Despite these challenges, the relevance of spiritual concerns across the life span, but particularly as the end of life draws near, has been receiving more attention from health care providers and institutions. Here, Innovations presents an interviewwith Christina M. Puchalski, MD, who has designed a short spiritual history for physicians and others to access the patient’s perspective on these issues. Dr. Puchalski is working in a larger context where we now see many efforts to develop more sophisticated methods to measure the impact of religiousness or spirituality on physical and mental health.1,2 Currently, there are multiple efforts being made to educate clinicians from avariety of disciplines andothers about the spiritual aspectsof care for patients. These effortsincludecoursesinmedicalschoolsandContinuingMedicalEducation (CME) opportunities in residency and nursing programs. There are also efforts to educate the larger public. Research is being undertaken to correlate resultsof the medical research with the beliefs and practices of believers from different religious perspectives. Dr. Puchalski’s work exemplifies another area of activity: practical programs and efforts that focus on integrating patients’ spirituality into their medical care. These efforts focus on screening tools, treatment plans, networking with chaplains and congregations, the roles of doctors, nurses, and patients, and so forth. End-of-life care is a particularly salient area of interest forthese efforts to integrate spirituality with medical care. Linked to a renewed interest in the impact of spiritual beliefs on the lives and well-being of patients is the interest in the spirituality of the medical caregivers themselves, that is, physicians and nurses. Their faith and spirituality are being on the care and nurture of studied, and programs are being developed that focus their spiritual well-being. These efforts occur in a larger context of an ongoing effort to promote relationship-centered care thatdepends on caregivers cLlltivating self-awareness and self-knowledge as prerequisites to developing therapeutic relationships with patients.’ Faith-based health care systems are investigating how to make their organizations “spirituality friendly.” Inother words, how can the spiritualities of the employees and associates be respected and encouraged? In particular, there is a question about the spiritual groundedness of individuals who would be leaders in faith-based health care organizations. At least two different faith-based organizations have ongoing efforts thataim to make clear what faith-based care looks like and to increase its presence. For example, Advocate Health Care, an integrated
INTEGRATING SPIRITUALITY INTO END-OF-LIFE CARE 203
health delivery network of 24,000 associates who work acrossthe continu~mfrom acute care to hospice, is in the midst of a research and organizational change effort to explore what “faith-based” meansto their practitioners. Another effortto name and operationalize what it meansto be faith-based comes from the Daughters of Charity National Health System. Their work has resulted in Spirit Care, a focus on the delivery of spiritual health for patients, clients, employees, staff, andthe community, which aimsto objectify spiritual health care issues and to idente and bring about desired health outcomes.* This effort has resulted in several videotapes to be used to explore spiritual health care delivery.” Institutionwide effortsto clarify what an institution means by being faith-based as it operates in a heterogeneous society addressthe same tension that I named at the outset. How do we apply our faith to interactions with others, who may not share that same faith? What kinds of behaviors, policies, and attitudes cross-cut particular setsof beliefs and make roomfor potentially diverse sets of patient spiritual beliefs in a health care setting? Finally, there is an interest in spirituality within biomedical and health care orga~zationalethics which encompasses three aspects. The firstconcerns the ethical problems that will come about as health care systems attempt to integrate spirituality into patient care. The second concerns the fact that spiritual beliefs and practices enter significantly into the difficult moral decisions people have to make as they face medical realities. The third concerns spirituality as a grounding for everyday ethics, for the struggle to implement values into the day-in day-out delivery of health care.
1. Larson DB, Swyers JP, McCullough ME, eds. Scientific Research on Spirituali~and Health: A Consensus Report. National Institute for Health Care Research, 1998. 2 . ~ u l t i d i m e n s i o ~ Measurement al of Religiousness/Spirituality for Use in Health Research. John E. Fetzer Institute publication, 1999. 3. Tresolini CP, Pew Fetzer Task Force. Health ProfessionsEducation and Relationship Centered Care. San Francisco, CA: Pew Wealth Professions Commission, 1994. 4. Creating a Culture of Universal Healing.National Focus. Daughters of Charity National Health System-West Central, 1997.
*See Appendix B, pp. 249-296.
This Page Intentionally Left Blank
An interview with CHRISTINA M, PUC National Institute for Healthcare Research Rockville, Maryland Christina Puchalski, MD, is an internist and geriatrician who has recently designed a Spiritual Assessment tool consistingof four basic ~uestionsthat physicians or others can integrate into patient intervi~ws~ on: is remembered by the acronym FICA, for the four domains it to~~ches Faith, Importance, Community, and Address. In this interview with Anna L. Romer, EdD, Dr. Puchalski explores how she came to develop the spiritual history, how she sees it as distinctfrom a care~ul psychosocial history, and what she has learned as she has trainedphysicians across the United States to incorporate it into their medical interviews. h n a L. R o m e ~First, let us review how you under st an^ s ~ i ~ ~ tand u athe ~ i ~ context for using the spiritual history or assessment,
halski: I see spirituality as that which allows a perience transcendent meaning in life. This is often expressed as a relationsh~p with God, but it can alsobe about nature, art, music,family, or community-whateverbeliefsandvaluesgiveapersona sense ofmeaningand purpose in life. A spiritual history is a beliefs or values history that explicitly opens the door to a conversation about the role of spirituality and religion in the person’s life. This conversation is extremely important for patientswho are gravely ill and for dying patients. Spiritual questions that come up for these patients include: What gives mylife meaning? Whyis this thing happening to me? How will I survive this loss? What will happen to me when life ends? We as clinicians don’t know the answers, but I do see it as our role to support and encourage people as they search for their own answers to these 205
206
SPIRITUALITY IN END-OF-LIFE CARE
Their spirit.ua1 beliefs, religious faith, and values are resources, and it is also important to see this work as a team effort and to refer patients to chaplains and spiritual directors as needed. :How
do s ~ i ~ i t uand a ~ health i~ care intersect?
: Patients learn to cope with and understand their suffering through their spiritual beliefs orthe spiritual dimension of their lives. It is also through that dimension tkat I think the compassionate, caring part of the doctor-patient relationship is enacted. We don’t normally think of it that way, butto me, it is a very spiritual interaction. Physicians are calledto a service profession-our job is caring for people. I think that, in and of itself, is spiritual work.
What has happened over the last 30 years is that science has really led medicine, and a lotof the nontechnical aspectsof medicine have been neglected. The spiritual assessment brings us back to those compassionate, caregiving roots of the patient-doctor relationship.Doing the spiritual history also helps health care providers understand the role that spirituality plays in the patient-clinician relationship itself. : Can you
say a little more about that?
: Let me speak specifically about doctors because that is the group I’m part of and that I work with most, and every profession has some differences. Howso burever, I believe this applies to all the health care professions. Physicians are dened by time, stress, andthe enormous amountof technical knowledge thatwe have to learn that many of us come out of medical school not very well trained to communicate with patients about things like end-of-life decisionsor nonphysical suffering. We tend to rely on what we are most comfortable with, which is our technical training. In fact, patients are very dissatisfied with that sort of patient-doctor relationship because they want doctors to be caring in additionto being technically skilled. A Gallup survey in 1997 looked at what people said they with their physiwould wantif they were dying. Havingwarm, caring relationships cians was one of the responses. These same respondents also reported that docI think that part of the reason for this tors are lacking in these relationship skills. gap is that, as physicians, we don’t take the time to get to know the person in the patient. We walk into the office, act very quickly, focuson the things we are comfortable with-medications and prescriptions-and then leave. When you get involved in a discussion with a patient about his or her spirituality, youenter the domain of what gives that person meaning and purpose. When you begin to f i d out about whythe person is suffering and to listen to that person, you cannot helpbut notice a change inthe quality of the relationship. Physicians who have incorporated the spiritual assessment write and tell me about it. They say that the nature of the patient-doctor relationship changes-as soon as they bring up these questions, they feel that it establishes a certain levelof intimacy in terms of really understanding who that person is at a much deeper level than they are accustomed to. The relationship feels less superficial.
TAKING A SPIRITUAL HISTORY ALLOWSCLINICIANS TO UNDERSTAND
207
w would you distinguish between a very carefulpsychosoc~a~ approach to an interview and what you are referring to as a spiritual approach? Traditionally, in a psychosocial approach, people ask, “How are you copith this illness? What are the stresses in your life?Are you fearful about dying? Do you have any fears of the future? How do you think your family is coping with aU this?” Those are very important and relevant questions, and some spiritual aspects may emerge from those qQestions, but the questions are more targeted at psychological or social issues, such as how the person is feeling, 8nancial pressures, or physical well-being. The spiritual domain includes more than questions abouthow a person is coping. The questions I am interested in are: Are there issues of despair? Meaning? Purpose? Belief in a god or an afterlife? People often feel, particularlywhen they are dying, that their life hasno meaning. A patient might be ableto answer all of have a sothe psychosocial questions by saying, “My familyhelps me cope,” or “I cial worker who works with me to resolve my financial problems.” Although a person may be able to answer these questions, still, at a very deep place inside h i m s e ~or herself, the person is despairing. The patient might feel that life has lost itspurpose, which might not come out in a psychosocial interview. Certainly, of things probablywon’t come out belief in God, belief in afterlife, all those kinds in a typical medical interview, yet we are seeing from a number of surveys that spiritual issues are very important to a lotof people. Often, they need permission to talk about those kinds of issues. Without some signal from the physician, patients may feel that these topics are not appropriate or welcome. In using my Spiritual Assessment tool (Figure 5), my opening question is about the presence of faith or belief, ”,so I ask, “Do you consider yourself spiritual or religious?” I find thisis a very different opening from “What helps you cope?” Iopen the interview to however that person wantsto answer it. I don’t have an agenda, and that is very important. Religious people feel an affinity for that question right away. People who are not religious, but who are spiritual, will understand it that way. Occasionally, I’ve had someone say that they are neither, and then I ask, “What gives your life meaning and purpose?” However, following a question that talks about spiritual, or religious beliefs, the meaning or purpose question takes on a differenttone, and then I can take the patient’s lead. For example, I have a patient who feels that nature is very important, and she said something like, “I’m a naturalist, and looking at trees makes me feel really centered and with purpose. In fact, one of the things she said was that if she were dying, she would want me to refer her to a hospice with a window next to some trees because that is what gives her meaning and purpose in life. Now, I don’t think I would have gotten that kind of information out of a strictly psychosocial type of interview. so they welcomethe opportunity to not Many of my patients are very religious, be laughed at, but to be able to talk about such issues. Answers vary from,“I go to church every day or every week,” and “My belief in God is central, it is really important to me, it’s the way I cope with things,” to “I use prayer every day,”or “
”
2~~
SPIRITUALITY IN END-OF-LIFE CARE
An
that can be used
to r e ~ ~ m b e r at to ask in a spiritual
history is:
s you can use to discuss these issues are:
lay in r e ~ a i nyour i ~ ~hea~th?
alth care provider to address these
e n t i a ~ y i m p o ~ a n t c o ~ p of o nevery e ~ t pa-
ou personally andwill you care to make the
.
TAKING ASPIRITUALHISTORY
ALLOWS CLINICIANS T O UNDERSTAND
209
“I have rituals. I meditate.I do yoga.” There are a lotof ways people will answer that question. However, it is not enough just to know whether a patient is spiritual or religious. Inthe past, spiritual assessment has been rather simplistic or limited, merely I developed the secasking patients about their religious denomination. Therefore, ond domain, in which I am striving to get at how a person’s spiritual beliefswhether they be nature, music, art, or a particular religion-influence that person in the way that he or she cares for himself or herself. This is the domain I for importance orthe influence of those spiritual beliefs onthe person’s life. With a dyingpatient, the question wouldbe, “How do these beliefs influence the ways you are coping with dying? How do they influence the ways you are making end-of-life decisions? The third domain, “C,” refers to the person’s community. The community aspect may be what is important, and thatmay be a formal religious community or some other sort of community. Many of our religious or spiritual beliefs are expressed int~sicallythrough meditation, prayer, a relationship with God or nature. But there is also an extrinsic element which has to do with how a faith is practiced in the context of a Community. That could be a church, temple, or mosque. It might be a group of like-minded friends or an alternative spiritual group. This question about community has important practical implications because many times those people in the Community are the ones who will help a patient. For example, I have a patient who is 88 years old, and her husband is 93. He is dying, and she is not strong enough to lift him and do all the caregiving. People from her church come almost every day and help them. This kind of community is a phenomenal resource. A fellow in geriatrics working with me was presenting the case to me, and he told me, “They have nosupport! They don’t have a social worker coming in. The home health aide comes maybe once a week. How is she managing?”So I said, “Well, have you asked about their spiritual history?” He then did that, and he came back and said, “You know, in fact, they7reCatholic, and people from their church come in every day. It’s an incredible support! If he had not asked that question, he would not have known that. Plus, the belief system is a support, too. for application or address, The fourth part of the assessment, which I call leads to the part where I think, “Howis it that I can intervene in this situation or address these issues?” For example, when patients are healthy and come in for a regular physical examination, they may tell me briefly about their belief systems, but if spiritual issues do not really seem to abebig concern, I may not do anything with that content. If someone comes in and says something thatI hear as a -warning sign, however, I might want to make a referralto a trained chaplain to help sort that out. For example, a person may see God as punitive, and the spiritual assessment may allow meto make a link betoireen this attitude and the patient’s not wanting to take medicines or not taking care of Wself or herself. Or if someone is dying, spiritual concernsmay be the only thing we talk about. I may bring a patient back the following week just to talk about these issues ofMe and death and how his or her spiritual beliefs &ect any sufferingthe person may be feeling. ”
”
”
“
”
SPIRITUALITY IN END-OF-LIFE CARE
I think the whole issue with end-of-life care is that many people say they do good palliative care, and what they define as good palliative care is being able to give narcotics andmanage pain andother symptoms appropriately.though that is extraordinarily important, it is not the only as ect of s~fering. Again, we tend to focus on the physical suffering-what we see in front of our eyes-but it is crucial to attend to the spiritual dimension.of suffering, and it is distinct from emotional suffering. : Can you give
an e x a ~ ~tol eclarify that ~ i s t i n c t i o ~ ?
patient may be depressed or anxious, and although thatmay be related to spiritual suffering, isit not the whole picture.I have manypeople who are healthy A paemotionally, butwho suffer tremendously spiritually. Here’s a good example. tient with several children was dying, and the staff thought she was depressed,so they gave her medication for her depression, which only created new side effects. The medication did not help alleviateher mood, as they described it. I was called in to consult and went to talk to her. I did not find her depressed at all. She was just feeling that her life had no purpose and that she had nothing more to do in whatever timeshe had left. Her biggestconcern was, “My two-yearold is not going to remember me.” We talked about what she could do to help her youngest daughter rememberher. One toolwe use in this situation to is write a legacy, a document in which the patient articulates the things that are important to her and answers the question, “What arethe kinds of values you want to impart to your daughter?”For the next month, that is what she worked on. She wrote a legacy for her daughter,which included things like, “These are my hopes and dreams for you.” In addition, one of the nurses videotaped her. This document and videotapethen became somethingher daughter could haveas she grew up. Withall these es to address her concerns about the meaning of her life, the “depression” ght away, without any medication. There are other examples. I have patients in the nursing home who are not depressed or anxious, yet there is something unsettled, which you would not necessarily be able to pick up on. When you ask, “How are yo”doing?”they’ll say, “You know, I don’t know.” m e n I take a spiritualhistory,whatcomesoutis,“You know, I really believe in God, I’ve believed in God my whole life, but I’m really wondering if He’s here for me right now. I’m feeling very abandonedby him.” That feeling or question doesn’t necessarily result in a depressionor an anxiety; it is just part of a spiritual journey. Nevertheless, it causes spiritual distress. Withpeople like that, either I talk to them or I make a referralto a chaplain,who comes and works with ry other day on those kinds of issues to help them sort it them every day or You cannot give a pill for that, nor can you tell them, out. There is no m fix. :A
TAKING A SPIRITUAL HISTORY ALLOWSCLINICIANS TO UNDERSTAND
211
“Oh, sure, God’s there for you. Don’t worry aboutit.” You cannot evengive people an answer. However, you can listen and support them, and you can call on people who have particular training in this domain, such as trained chaplainsor spiritual directors, who can help patients work through this issue of God’s not being there for them and cometo some kind of resolution. :How
didyou get involved in thinking about spiritual issuesas a physician?
P: I did a lot of basic research as a biochemist at the National Institutes of I started volunteeringat a state Health (NIH),which I found personally urrfurllling. mental hospital here in Maryland on the weekends, working with people with chronic mental illness.I saw a lot of spiritual distress that was being overlooked. People who were able to find some sort of peace were the ones who were able to tap into that spiritual dimension in their lives, WhenI went to medical school, I thought, “Well, obviously, I’m going to learn a lot aboutthis,” and I didn’t. I saw nothing on spirituality. Even with something like alcoholism, there was nothing on 12-step programs. Nothing. It was all very biomedical. I was amazed by’ that absence. In my own life, I experienced the death of someone closeto me and so took part in bereavement groups and observedhow other people deal with loss. I thought, “Hmm. Nothing on that. Nothing on death and dying.” While a medon spirical student at George Washington University,I started an elective course ituality and medicine. Theother students loved this course.I remember one classmate of mine. He was Jewish, and we rotated through Holy Cross, a Catholic hospital here in the Washington, DC, area. He mentioned that, at first, he was very anxious about going to a Catholic hospital becausehe had this image ofnuns and priests walkingdown the hall and of Catholicism being imposed on him. He was delighted when, in fact, that was not hisexperience at all. Instead, he found that it was his favorite hospital becausehe experienced a sense of hope there. We have since integrated the content of that course into the required curriculum at George Washington University. Now, there are about 61 medical schools in the country that include some teaching about spirituality and medicine.Most of them have required courses on spirituality in medicine, based on that same model of integrating it throughout different courses. : ?V73at about
the issue of time? V e continue to hear about howphysicians are bard pressed to spend time with patients, andthis spiritual history seems to add one more thing to the litany of topics doctorsare expected to ask about as they do a medical interview. : There is a great deal that is being thrown at doctors, even more now because in the standard history that we are teaching, we really want you to do a good social history. There are questions about domestic violence, there is a sexual history-I mean, everything is in there. All of that is important, but you have to use your judgment. Clearly,if someone comes inwith chest pains, Iam not going to sit there and ask him or her about a spiritual history. If the patient is clutching his or her chest, 17mgoing to do a quick ECG and figureout what’s going on.
212
SPIRITUALITY IN END-OF-LIFE CARE
The patient may need rapid intervention. On the other hand, if someone comes in for a regular physical, I would suggest addressing all these issues. It can be done in FICA takes a briefamountoftime.The about two minutes. Spirituality is centralto the care of the dying. Whenpeople are dying, the spiritual history is essential. I think if we don’t address these issueswith someone who comes in with a sore throat, that is okay. But if we don’t ask about spiritual beliefs with someone who is dying, I think we are being really remiss in our duties. :Are
you training physicians around the country to do this spiritual assessment? And are you targeting that training toward end-of-life care, as it seems to be such a vast area of need? : Yes.
I do not want to say that I am targeting it only to end-of-life care because it is so important across the whole spectrum. My interest is in end-of-life care, so I tend to be in that circle of people. When I give a presentation to clinicians working in end-of-lifecare, I present the spiritual history as something appropriate to do across the life span. A good analogy is to advance care planning, which we know should not be done at the very end either. Many advocates of advance care planning talk about doing it early on when the person is healthy. The nature of the conversation changes over time. So, too, for spiritual assessment. It may be for your 25-year-old, perfectly healthy person on a routine physical, you ask a couple of questions, you jot it down-maybe it’s an issue, maybe with a diagnosisof H N or having canit isn’t.But if that person is suddenly faced cer or a chronic illness, those discussions are going to become more frequent. These topics are related.I have found that when doing advance care planning, even under difficult circumstances with a patient I don’t already know, if I start by taking a spiritual history, the conversation changes. If a patient cannot talk, I do a spi~tualhistory with the family. Once I am engaged in that conversation, it is so much easier to go into what gives that person meaning and purpose in life and how the patient might want to die or under what circumstances. Most people are much more cornfortable talking about end-of-life decisions incontext. that So, I focus a little moreon spiritual concerns when I talk with people about endof-life issues. :Please
describe the training you do.
:Ideally, the workshop lasts about11/2 to 2 hours. That time frame just gives people enough time to role-play, discuss, and work in smallgroups, but I can do it in 45 minutes if need be. I give a brief presentation on the assessment tool. I talk about why we do it, what the key issues are, and how you look for what I
TAKING ASPIRITUALHISTORY
ALLOWS C L I N I ~ I A N S T O U N D E ~ S T A N D 213
would call “po~itive’~ versus “negative’’ spirituality. Itis not that any spirituality is negative, but we give people an idea of what spiritual symptoms might be. For example, the concept of God being a punitive god could be a negative symptom, and that might be linked to a patient’s being unwilling to go on with treatment because of that. Then, I present ways to deal with that issue. I then give some case examples, and I have people role-play with each other. If we have the longer period of time, we break up into smaller groups and discuss how that experience was and ways that they might integrate it into whatever their professions are. I do this with physicians, nurses, social workers, and others. Interdisciplinary groups aremy favorite because this kindof care does not belong in any one person’s domain. The best workshops I’ve had included chaplains, physicians, nurses, social workers, Licensed Professional Nurses (LPNs), and home health care aides. Whet1 this happens, people across all of these roles end up interacting, and, particularly inthe small group discussion, they see how situations might be different in each of their different professions, as well as what they share.Then, we come back into a large group and address issues about how the interview went and maybe share inthe large group. That usually workspretty well. 1 try to follow up with people. I give a handout, which most people find h e l p ~ l17m . now working in more detail on a checklist that people can take back with them because sometimes people forget. They just don’t remember all the specifics. : Can you give me another example of what you are calling “negativespirituality?” :Some people have
less mature relationships with God-similarto a four-yearold’s relationship witha parent. ‘Wbat I mean is that they havea very concrete and quid pro quo relationship: “If I pray, God will cure me.’’ If that doesn’t happen, I would sugtheir faith is challenged, and they can feel abandoned and despairing. gest that spiritual support might allow a person to develop a more mature faith. : It sounds like your own spirituality has been central, even though you azfe not explicitly said that, to your being in this place and doing this work. Do you address the participants’ spirituality in your workshops in terms of what their values are and what gives their life purpose? : ‘Wben people pair up in the small groups to do a spiritual assessment, they often come to recognize their own spirituality. I have some questions targetedto that experience in the small group exercise. One of the things people often say is that you cannot address apatient’s spirituality until you address your own. I believe that. I don’t think it’s a prerequisite because I think people are addressing it unconsciously whether they know itor not. But I think it is importantto be in touch with our own spirituality. It does not have to be formal, butthere needs to be an awareness. There has actually been a lot done on this. Daniel Sulmasy, MD, whomyoumay know, has written a book on spirituality and the health care provider.2
214
SPIRITUALITY IN END-OF-LIFE CARE
Rachel Naomi Remen, MI>, is coming out with a book on the call to service. She spoke at one ofmy conferences and observed that in California, where the managed care rates arethe highest in the country, the physician suicide rates are also the highest, as are the physician dropout rates for medicine. One of the things we have to reclaim as a profession is our own spiritual roots-the spiritual roots We are coming backto thebeof the calling to be a physician. It is not just a job. ginning of the conversation, where I said that bringing spiritualityinto the history a physician starts engaging in these changes the patient-doctor relationship, Once conversations with patients, he or she immediately becomes awareof that aspect inside himself or herself and, I think, becomes a more open and compassionate doctor as a result. I do not have data for that, but I can tell you from what patients and physicians have told me. Physicians become open moreand more compassionate. Patients also become more open and trusting. Often, opening this conversation about purpose and meaning touches that part of the doctor that made him or her want to be a physician in the first place. I see being a physician as a spiritual calling.We put our patients’ needs above ourown, that is one of the first things. We give of ourselves; we are available. We hold someone’s hand, or we walk through that journey with them, and unfortunately, the systems of health care right now are mitigating againstthat. However, I think the profession really wants to recapture a lot of that domain. This is one of the reasons the spiritual assessment is so popular right now. : It
does not sound as though you have met much resistance from physicians to this training. Do you think that’s because you are preacbing to the converted?
TAKING A SPIRITUAL HISTORY ALLOWSCLINICIANS TO UNDERSTAND
215
tal. Attending to patients’ meanings and life purposes fits into the patient-centered model of care.’ :Do you
have any idea about how many people you have trained to date?
: I have directly trained roughly 4000 people to do the spiritual history. It is a train-the-trainer model,as these people then take the tool back to their settings, and they may train others. In addition, manyof the courses at medical schools are using the spiritual history (FICA) tool, so it is hard to make an exact estimate.
:Are you
evaluating your efforts in any way?
CME We are now. I am doing a study where 1 am looking at whether the FICA assessment itself makes a difference in the things people say it does, such as the patient-doctor relationship and some patient outcomes. I am looking at depression as well as a spirituality index. : How
are you measuring these outcomes?
CMP: I have different instruments for each of those. I have a patient satisfaction instrument, a depression scale,the Brief Depression Inventory, and the Spirituality Index, which is a 12-item subscale of the FACT quality of life measurement scale5 We are also using a five-item religiosity scale.We are just beginning these studies. :Are you
going to be doing any interviewing?
:Absolutely. I am changing the study a little bit because I found that these instruments weren’t sufficient to measure what I am interested in. We are going to hold some focus groups. People want to share stories much more than they want to give a specific answer to a forced choice question. : What kind of feedback have you received about the usefulness or the effects of this training? : Some people say that they have been addressing spiritual issues all along, but that this simple set of questions has madeit easier. Part of the problem is that people do not know whatis spiritual and what isnot. What the FICA does, albeit in a simplified way, is to Clare the topic. I have heard people say, “This makes it approachable. This makes sense.” This tool is geared to a time-constrained setting. I wanted to create something doctors or others could use at the beginning of the examination, something that wouldn’t be constrained so that patients could really lead into any area that was important to them. I see the spiritual assessment as openingthe conversation and
216
SPIRITUALITY IN END-OF-LIFECARE
making it permissible for patients and health care providers to include this domain in the medical interview.That really was the focus behind this. Just last week I gave a presentation, and someone said at the very beginning, “This is fine, but I bet it’s going to be too long to do.” Afterward, he said, “You mentioned you could do it in a short amountof time, and I was really surprised, but when I did it here, I can see that I could do it in two minutes. I could raise these topics ina couple of minutes, andthen obviously, just like anything else,if there are issues, you dealwith them.”
of
:Have you gotten any feedback from psychiatrists or psychologistsin terms how they feel this dovetails with what they do? : Actually,
a lot of psychiatrists are involved in this themselves. At the National Institute for HealthCare Research, we give awards to psychiatry residency I have also spotraining programs for developing spirituality in medical curricula. ken at the American Psychiatric Association (APA) several times, and each year they keep accepting the workshop. When I first spoke to the M A , I had some trepidation because I thought, “They’re doing this already. This is going to be oversimplified for them.” In fact, it wasnot, and they found this short tool quite useful because it is not that easy to bring up spiritual beliefs in that context. Some psychiatrists havethe luxury of time to go into these things ina lot greaterdepth, so they might use this to open the conversation, andthen they have other kinds of things they use to address spiritual beliefs in more detail, relatedto psychodynamic issues. : DO you think this tool would beapplicable culturally?
international^ orcross-
because the principles are general. YOLIdon’t have to use the exact words in the assessment tool. The first question is an open-ended question, askfor paing patients if they consider themselves spiritual or religious. Respect the tient’sbelief system is integral to doing a spiritual history. You do not impose your own belief or culture on it. The patient is really educating you. the Here is a twiston your question.Some health care providers have modified FICA spiritual assessment toolto do a cultural assessment, So, instead of the first question being,What is your faith or belief? or Do you consider yourself spiritual or religious? they have transformed itto, m a t ’ s your cultural background? Tell me aboutit. The second question then becomes, important is it? How does it influence you? The tool seems quite flexible and adaptable to other domains, such as cultural identity. On the other hand, if someone were to say something like, “Do you have a specific religion? How many times do you go to church?”that would be a misreading of : Yes,
TAKING A SPIRITUALHISTORYALLOWSCLINICIANSTOUNDERSTAND
217
my tool. Those kinds of questions could lead the clinician to miss a wide range I specifically kept the spiritual assessment rather openof beliefs. That is why ended. :W
a t are the lessons you have learned so far? W e r e are you going with
this? CME One thingI would also liketo get involved in is defining spiritualitybetter. What does spiritual care mean? I would like to talk to practitioners about what they meanby spiritual care. What arethe different typesof spiritual carethat one can offer? Right now, off the top ofmy head, I can list a few things. Listening would be one. Also, being present to theperson; allowing the time and space for ritual, guided imagery, prayer, meditation; and including referral to chaplains as an acceptable part of care. I think we need to assess what we are doing. In addition to looking at pat~ent outcomes, I am starting to do follow-up surveyswith people who have attended my conference. I think we need to get a little bit more analytical, even thoughI resist being analytical about spirituality because I think some things just cannot be measured. I really do. Having been a researcher inthe past, I think that there are some aspects of the spiritual interaction between the physician and the patient that maybe cannot be measured. You can measure d~nomination;you ean measure church/temple/mosque attendance, but certainly the intensity of a person's own spirituality is very difficult to measure. I think that is one of the things people are having trouble with.
1. Puchalski C. A spiritual history. Supportive Voice 1999;5(3):12-13. 2 . Sulmasy D. m e Healer's Calling:A Spirituality for Physicians and Other Health Care Professionals. Mahwah, NJ: Paulist Press, 1997. 3. Kendrick SB. A report on new medical school courses relating to religious faith and medicine. Med Encounter 1998;13(4):14-17. 4. Puchalski CM, Larson DB. Developing curricula in spirituality and medicine. Acad Med 1997;73(9):970-974. 5 . Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, Silberman M, "Yellen SB, Vinocour P, Brannon J, et al. The functional assessment of cancer therapy scale: Development and validation of the general measure.J Clin Oncol 1993;l 1(3):570-5~9.
This Page Intentionally Left Blank
sport is horseback riding. If you ride long enough, sooner or later, one moment you’re onthe horse and the next you’re on the ground, looking at the sky, slightly dazed and breathless. I remember feeling just that way-slightly dazed and breathless, with a touch of nausea-on a March day in 1994,when Hannah, my husband’s2 1-year-old granddaughter, called to tell me that the strange brown lump on her right thumb was a malignant melanoma. As an anesthesiologist, I only see such patien when the man~estationsof whatever disease are surgically removed. memory was of a time in medical school, some 20 years earlier, when a fellow student’s wife died of this disease. We were very close to amah and her family. YVhile the mother-grandmother in me prepared for the clan to take up residence in our home,the doctor in me searched the Internet and found that, in some cases, the prognosis in 1994 wds as devastating as the prognosis in 1974, staved off by a few years. Fast forward to 1997. Hannah had metastases. The brain metastases would be treated by radiation. The abdominal metastases could not be treated at all. of the wh could I do? Doctors are trainedto do. The anxiety and awfulness riation was madeso much worseby not being able to do that which I (and her doctors) had been trained, acculturated, and accustomed to do. Her real doctors signed her off to the palliative care specialists. I faced despair. Wait-perhaps it was time to return to something else I knew how to do (aside from making chicken soup). I knew how to pray, but pray forwhat? exactlybelieveinmiracle cures. They’re OK from a distance, butwhen you have a former athlete in your living roomwho can 21 9
220 SPIRITUALITY IN END-OF-LIFE CARE
barely sit up, whose belly is swollen with ascites, and who is hairless from radiation, the cognitive dissonance is too much. Then the words of the Jewish prayer for healing cameto me: the source of strength o blessed the ones before us elp us fmd the courage To make our lives a blessing, And let us say, h e n . less those in need of healing With ~ e f ~ a b s b ~ e i ~ a , The renewal of body, The renewal of spirit, And let us say, Amen. The first stanza places the emphasis on the individual, praying, “Help us find the courage.” So, I prayed for myself to be a source of courage-to just be with Hannah during her last days, whichwere spent under our roof. As I became more aware of the need to let go of the doing part of me and become more attuned to the being part of me, I sensed in my patients the desire to have a caregiver stop and be for a moment. From my own experience, I called this desire for a momentof connectedness “spirituality.” TVhile all of this was happening athome, I read about the Schwartz Fellowship in Clinical Pastoral Education(CPE). I jumped at thisopportunity,for by that time I had figured out thatI had the desire to connect in this way with my patientsand perhaps even had some innate ability-but I lacked the vocabulary and any formal training. Furthermore, I wanted some supervision ofmy attempts to engage patients’ spiritually. 1997) was edThe application process (completed after Hannah’s death in July ucational in itse Sitting down and committing to paper my spiritual journey and the t~rningpoints in my life was far from the multiple choice, “Just the facts, ma’am’’process to which I had become accustomed. After the prideful flush of being selected as a Schwartz Fellow passed,I was faced with the reality of turning in an exercise every week in which I recorded verbatim the conversation I had had with one ofmy patients in a clinical setting. I learned to ask patients about faith and prayer and their notionsof the Spirit. I learned to ask them what gave them ~ e a n i n g in their lives and what their real concernswere in facing their illnesses. The moreI engaged inthese conversations, the more natural it became, and there were some incredibly high momentsof bond in^ and connection that I had never felt before. Take for example, Mrs. Farmer,” a 56-year-old dairy farmer from Nigeria, who reviously had taught school for many years. She had undergone two craniotomies
*I have changed the names to protect the privacy of the patients involved.
ADDING A SPIRITUALDIMENSIONTOTHEPRACTICE
OF ANESTHESIOLOGY
221
222 SPIRITUALITY IN END-OF-LIFE CARE
am able to do this for myself, the more I can remain grounded, focused and preon presence helps sent withmy patients. Unlike a rote medical history, this focus make a connection with the patient and can turn the most disquieting moment into a space of calm. Not long ago, I was anesthetizing Dr. Barrie, a 42-year-old female chemist, for ’~ excision of a brain lesion thoughtto be the cause of her seizures. “ m i ~ u sdoes not do justice to this patient’s emotionalstate, and her anxiety wasb e g i ~ i n gto be contagious.She denied interest in prayer, meditation, or relaxation techniques. I asked her if she could visualize, just for a moment, a placewhere she felt calm and relaxed. After only several minutes, she began telling me about her A-frame house in Vermont, with the trees and the loons on the lake. She became more peaceful, those around her became more peaceful, and she fell off to sleep with a calm expression. I consider that experience a “win.”In this calm place of connection, the Spirit is free to enter. The enhanced job satisfaction I feel is immeasurable.
Interview with
St. Ch~isto~her~s London7 ~ n g l a n d is a p~actitionerof the ancient Vaisnava tradition of ective on the place of spirituality in ulticultu~a17 ~ultilingualbackgrou Vaisnava H i n d u i s ~and f a ~ i l i a r with i ~ the p ~ i n c ~ ~ an^ l e spractice of Ayurvedic ~ e ~ i c i n e in India? and his e ~ p e ~ i e n cover e the past 10 years d 7 the elderly and those dying fro^ A working in London, ~ n g ~ a nwith cancer, and other diseases. He is also involved in i ~ p ~ o v i palliative ng care services in India7 where he is helping to create a iative care unit for the newly established ~haktivedanta bai, and is one of the founders ofplanned a hospicee a in V~ndavan? a S illage in n ~ ~ t b e aIndia. st its large Hindu c o ~ ~ u nGreat i ~ ? ligiously diverse society. In his nurse’s aide at St. Ch~istopher’s ticultu~al pe~spective to bear in addressing the spiritual needs of patients and f a ~ i l i e swith s o ~ e t i ~ widely es d~feringviews about the ~ e a n i n gof life and death. I n an interview with Anna L. scribes his faith-based ap~roachto the care of the dying w do you define spi~ituality? Spi~tLlali~ defies a single definition. It is not restricted only to ng to a religious denomination. Spirituali~can do without relii ~innately gion, but the opposite is not true. I believe that s p ~ i t u a lis living entities and may be fostered throLlgh devotional practice of some kind. :
w do you distinguish between religion and spirituali~? attern, andacertainipline involves the objectiv lication
to follow.Its dyof certain prac-
namic moves from outw tices, which a~iculate open and nondogmatic and involves l ~ a r n i nand ~ chan~ing;its ~ynamicmoves 223
bjective growth and connection. One can through religious practice, but religious to spiritual growth or expression. SpiritL~ality canbe and being lovable, having purpose and meaning in ging, and being authentically oneself.
issues that health cure professionals are e s p i ~ i t ~needs u l of dying ~ u t i e n t us s part of Llnderstanding about the difference beoral care. Spiritual care comes fromthe heart ork. Spiritual care is at the core of palliative aining in assessing patients’ spiritual needs rovide effective spiritual care, the practiali~. mine his or her own s ~ ~ i t L ~ Holding uls can sometimes be painful for those impersonal roles and professional trainave excellent interpersonal relationships Patients often complain that health care hey lackthe human touch. §piritual care rs and is virtually absent in the medical nt and bereaved family and friends.
rn health care e n v i r o n ~ e nand t pereds of patients andtheir f a ~ i ~ i e s ? ining and education in the universal 0th the West and the East, which lie medic principles, palliative care ut also should form part of the nts, especially those from nonChristian and no~eligious deno~inations, to broaden their training horizons by being inclusive of what Eastern philosophy, religion, and culture haveto offer. Spiritual care is most profound and effective when it is not attached to one particular belief system. ist tressed patientscomeforth with suchquestionsas, “Why me?”“What have I done to deserve this?” “Why am I being punishedlike this?”I believe that spiritual care that transcends pastoral care is the most effective means of alleviating this kind of suffering.
VAISNAVA HINDU AND AYURVEDIC APPROACHES TO CARING FOR THE DYING :How
225
do you assess a patient’s spiritual needs?
HTD: I ask patients abouttheir religious affrliationor denomination, whether they belong to a church, if there are clergy involved in their lives, andif appropriate, how to contact them. I also ask about whether or not they wantany religious input in their carenow, if they wantto speak with a chaplain orto avoid them, and whether or not they wantto come to religious services. In terms of assessing their I try to assess whether they are feeling resigned spiritual needs apart from religion, or terrSied about the prospect of dying or if they feel isolated. I ask about what they hope for, what sense they make of their illness, what life means to them, what death holds forthem, and, when appropriate, if they believe in an afterlife. I try to assess their self-esteem andask about whether they are happywith who I also ask whether we can talk about their they are and have become in their lives. body image. :How would you recommend that health care providers hold this kind of conversation with patients?
TD: This is not an easy question to answer, as there are as many methods as there are patients. These conversationsbetween counselor and dying patient are spontaneous and intimate.Each individual patient is unique, and there is no room for rigidity or inflexibility in the administering of spiritual care. The basic framework needs to be there, but how you color in the picture is very much dependent on time, place, circumstance, and individual person. We need research to standardize and consolidate a framework for spiritual care, which is essentialwhen drawing up an effective nursing and medical spiritual care plan. The keys to SUCcessM spiritual care counseling are listening, touching, silence and sharing. As the Indian proverb goes:God gave us one mouth and two ears so that we can listen twice as much as speak! In general, I would say the best way to hold this kindof conversation isby not hiding behind status, rank, qualification, or professionalism but, rather, by being equal, human, simple, honest, caring,nonjudgmental,andLlnderstanding.One needs to adopt excellent listening, speaking, and presentation skills. You need to provide strategies to patients that will foster their hope by being familiar with their belief system, if they have one, and self-disclosing your own related experiences and belief systems, reactively to theirs. Your aim in this is not to give solutions or speculate but, rather, to evoke positive thoughts,experiences,and memories. To do this well, you cannot be time restricted. In asking about religious matters, be matter-of-fact. They are objective questions with objective answers. You want to be open, nonjudgmental, and encouraging to people about their religious wants. In trying to get at spiritual needs and issues, listen more than talk. In particular, you are listening for expressions of hope, uselessness, meaning, purpose, losses, skill, aspectsof life history, such as, “Who am I?” “Why me?” and expressions of isolation or loneliness. Clues to a person’s state of mind can be foundby observing body language, asking oneself,“Is there
226
SPIRITUALITY IN END-OF-LIFE CARE
something hidden or painful here?” and attending to other fo s of expression, such as hesitation, deviation, andpoor eye contact. Dying patients often try to hide their desperation for spiritualc o ~ o r tIt. is up to the caregiver to provide the amount and type of info ation that the patient can absorb and benefit from. The comfort for patients initially does not always come in what you have to say or offer but in establishi~gconfidence and trust though your own sharing and se~-disclosure.Of course, I do not proa Vaisnavism or A ~ ~ e with d a tients, but will doso opposite is true with
those ~ n ~ a ~ i lwith i a r Vaisdaism and ~yarvedicprincip l e ~can ~ you provide us witb a brief o v e ~ v of ~ bow e ~ they affect tbe s p i ~ i t a a ~
: Spiritual care, in the Hindu tradition, starts at the moment of con and continues throughoutlife and into the next. In brief, the spiritual car dus is focused around certain rituals and sacraments, which aim at securing the welfare of the practitioner and advancing his or her spirituality. The ~hagavad Gita, a fundamental religious text for Hindus, teaches that “for the soul there is never birth nor death” and “as the embodied soul continuously passes, in this body, from boyhood to youth to old age, the soul similarly passes into another body at death. A sober person is not bewildered by such a change.”Thus, in performing the Antyesti, or funeral, whichis the last sacrament inthe life of a Hindu, survivors consecrate the death for the person’s future happiness. Death is considered to be the biological event through whichthe soul separates fromthe material body inwhich it is temporarilytrapped. Hindus believe that a person’s next birth or destination is dependent on the sum total of their actions, desires, and the result of past misdeeds, or thoughts in previous lives. Suffering is seen as karma, but it is also regarded as an unavoidable partof life that may be stoically endured. The quality of death is believed to be dependent on the quality of life, so the spiritual practices are important to life, death, and the transmigration to a new body. For Hindus, a good death is achieved if one lives life in such a way that death does not take one unawares. Therefore, they emphasize the daily execution of sacraments, worship, fruitful activities, and devotional service to God. They believe death should be entered voluntarily and peacefully and, in a sense, willed. One should leave the material body behind with the names of God on the lips and in the heart and mind of the dying. If the dying person is unable to do this, the responsibility to chant or read from the scriptures lies with the relatives, friends, or spiritual master. Thus, the belief that the s ~ i ~ t uidentity al of the individual continues even physical death offers great relief and solace to a indu person faced with death.
VAISNAVA HINDU AND AYURVEDIC APPROACHES TO CARING FOR THE DYING
227
: How
might a health care provider approach an elderly Hindu woman, for example, who is being cared for in a Western health care setting, to open a conversation about her spiritual needs or make itpermissiblefor her to open it, on her own terms? :Before meetingthe patient, it wouldbe imperative to know as much as possible about her social, psychological, religious/cultural, and medical background. I also recommend some contactwith the patient’s extended family, as she will allow themto make many decisionson her behalf. Cultural factors need to be taken into consideration in all aspects of her care, that is, what taboos she is constrained by; how strangers, especially men, relate to Hindu women; to which Hindu sect puncshe belongs;her dietary needs; andso forth. The conversations need not be tuated by the usual niceties as is often the case with non-Hindu patients. Hindus have a very open-hearted and minded approach to terminal illness and death.
The most important aspect for her is her preparation to depart from the body with her mind enshrined in thoughtsof God. If this is not possible becauseof her illness, it would be important for others to engage her sense of hearing (the last sense to succumb to the dying process) so that she is conscious of God. This can be done through chanting, reading from the scriptures, or playing devotional music, which conveys transcendental sound vibrations. Other important activities include placing holy water on the forehead and placing the sacred Tulasi leaves in the mouth and Tulasi beads around the neck. The Hindu woman would be far more concerned about her preparation for death in these ways, whereas a typical Westerner may be moreconcerned about being comfortable and pain free during the dying process. The Hindu emphasis would likely be on the soul rather than the usual emphasis in Western treatment settings onthe body and the family, friends, and pets left behind. : By contrast, how might the spiritual needs of someone from a Western nation (a European or American), who may not believe in God, be addressed? : In my experience, atheists are not concerned with life after death. They are mainly concerned about being pain-free, sometimes requestingto be unconscious during the dying process, and are primarily interested in being at peace with themselves, the world, and others. Speaking frommy own A p e d i c perspective, atheists seem to have the greatest dW1culty in moving through the dying process bethe underdeveloped cause it can be the occasion for a huge struggle between spiritual intellect and the developed material intellect. It isthe counselor’s responsibility to facilitate a mental state in which the dying atheist can be comfortable and peaceful-often a huge challenge, as from my experience, atheists arevery earthbound and attached to the material, which for them isthe only reality. :At your hospice in India, a spiritual care plan is an integral part of the overall plan of care, on a par with the medical and nursing care plan. W a t does a spiritual care plan consist of specifically?
228
SPIRITUALITY IN END-OF-LIFE CARE
: The spiritual care plan is an independent plan, which is implemented interdependently with the nursing and medical care plans. It forms of part the holistic approach to patient care. The ultimategoal of this aspect of care is to elevate the spiritualconsciousness of the patientthroughhis or herownspiritual/ religious/cultural affiliations and practices, under the guidance of a spiritual counselor, who is either a priest or brahman. Although the plan is coordinated by the spiritual care counselor, it is informedby multidisciplina~perspectives from the rest of the care team. The plan includes information taken from interviewswith the patient, his or her relatives,communitycareprofessionalsandspiritualreligious leader(s) relevant to the patient’s religious, psychosocial, and cultural needs. It will identify spiritual strengths and how these are fulfilled through various practices,worship, rituals, and sacraments andhow they could contribute to the healing of the patient, The plan also will identlfy spiritual needs (weaknesses) and how the hospital’s multidisciplinary team can meet these needs through mutually agreed upon strategies, based on aims, objectives, and outcomes. The plan is continuously assessed, reviewed, and adjusted according to the needs of the patient and his or her family members. The patient is greatly involved in developing and executing the content of this plan. If the patient is discharged to home, the aims and objectives of the care plan can be adjusted, with the patient’s consent. We encourage contact with the patient long after discharge or with the family members should the patient have died. :How
do ~ i n d u explain s the causes of disease?
: Disease
is explained by dysfunction in the family context as well as within the self. Therefore,as a firststep in treatingan Indianperson, a health care provider needs to do a careful and systematic analysis of the family dynamics and how the individual perceives himself or herself in relation to God and all other living entities. In the Indian context, the individual would be asked questions about his or her own principles and values, based on his or her own scriptural injunctions, that is, what or who is his or her true identity? What is the difference between matter and spirit?What does eternal life mean? m a t does he or she understand by karma? Who or what is God? Reevaluation of their duties as individuals will then take place, and ultimately, throughthe practice of bhakti-yoga (devotional service), mantra meditation, and karma yoga (service to the family and community)-all of these activities in combinationwith other therapies will restore balance and harmony into the patient’s life. : I n the Indian context, if the family dysfunction is repaired, yet the person still suffers pain and dies, how is that understood by the patient and family? :The explanation and acceptance of the disease, pain, and physical death lie in a deep understanding of the law of karma-you reap what you sow, to put it simplistically. The lawof karma (action-reaction) is extremely intricate and com-
VAISNAVA HINDU AND AYURVEDIC APPROACHES TO CARING FOR THE DYING
229
epairing a dysfunction only alleviates spiritual pain and makesthe dyeasier. Ayurvedic beliefaccepts that suffering and some degree of pain will always be there.
there an unders~an~ing of healing apart from cure in the A~urvedic s~stem? : Is
w would a Vestern hospital or hospice have to change to ~ c c o ~ ~ o date these beliefs and this kind of practice? estern hospital or hospice would need to be sensitive to the cultural/ r e l i ~ i o ~ s / s p i ~needs t ~ ~ aof l the non-Christian patients, by: volving the family in the physical care of the patient e care ~nvironmenthomelike dating dietary needs
230
SPIRITUALITY IN END-OF-LIFE CARE
Allowing or encouraging patients and families to engage theirown spiritual leaders in the spiritual care of the patient * Adjusting the chapel in the institution to make it suitable for the spiritual practices of non-Christians and making the care environment less institutionalized overall
0
When health care professionalsshow visible interest in the faiths and cultures of others, for example,by visiting a Hindu temple, it can go a long way to building a respectful relationship. Some other very simple modifkations that would help include not using white sheets on the bed and personalizingthe bed area; piping music from the patient’s own religiousor cultural traditionsto the patient’s bedside;making wards smaller and more personal,with fewer patients in each ward; and providing overnight facilities for families and friends. The multidisciplinary care team should be kept small, yet effective and should cultivate a more personal, less professional (disI believe tant, superior) demeanorby wearing street clothes rather than uniforms. it could be helpful to engage patients more in occupational therapies, complementary therapies, and to gradually introduce therapies from the East, such as Ayurveda andpancha karma. AtSt Christopher’s Hospice, for example, the staff have a continuous liaison with spiritual leaders from different faithstheincommunity, attend interfaith gatherings, make an effort to share in the celebrations of patients’ religious holidays, and visit their places of worship. We request that families identq patients’ special and specific needs regarding religious and spiritual practices. We allow spiritual leaders, family, and patient to perform informal rituals at the bedside, and our chapel houses scriptures and iconsof all the major faiths.
utors to this part: . Spiritual care, need and pain-recognition and response. EurJPalliative Care 1999;6(3):87-90. O’Connell LJ. The spiritual side of dying. Bioethics Forum 1997;13(4):3-6. O’ConnellLJ. The role of religion in health-related decision making for elderly- patients. Generation 1994; 17(4):27-30. P~~chalski CM. A spiritual history. Supportive Voice 1999;5(3): 12- 13. Puchalski CM, Larson DB. Developing curricula in spirituality and medicine. Acad Med 1997;73(9):970-974.
Byock I. Beyond symptom management: Growth and development at the end of life. E w J Palliative Care 1996;3(3):125-130. Byock I. Dying Well: m e Prospect for Growth and Development at the End of Lve. New York: Riverhead, 1997. Colorado Collaboration on End-of-Life Care. Five Themes for Caring: Spiritual Care Giving Guide. Denver, Colorado: Program in Health Care Ethics, Humanities and Law, University of Colorado Health Sciences Center, 1999. Copp L. Thenatureandprevention ofsuffering. J Professional NUTS 1990; 6(5):247-249. Doka K, Morgan J, eds. Death and Spirituality. Amityville, N u : Baywood Publishing Co., 1999. Feagin 011, guest ed. Special issue: Spirituality and the physician-patient relationship. Med Encounter 1998; 13(4). Ferrell B, Taylor E, Sattler G, Fowler M, Cheyney B. Searching forthe meaning of pain:Cancerpatients,caregivers,andnurses’perspectives. CancerPract 1993; l(3): 185-194. Ferrell B, Zichi-Cohen M, Rhiner M, Grant M. Pain as a metaphor for illness,Part I: Impact of cancer pain on family caregivers. Oncol Nurs Forum 1991;18(8):1303-1309. Ferrell B, Zichi-Cohen M, Rhiner M, Rozek A. Pain as a metaphor for illness,Part 11: F a ~ i l ycaregivers’ management of pain. Oncol Nurs Forum I991;18(8): 1315-1321. Frank1 VIE. Man’s Searchfor Meaning. London: Hodder and Stoughton, 1987. Hardwig J. Spiritual issues at the end of life: A call for discussion. Hastings Cent Rep 2000;30(2):28-30. Har~ngtonA. Spiritualcare: %That doesitmean to RNs? Aust J Adv Nurs 1995;12(4):5-14. , Naberhaus DS, Hellmich LK. The spiritual involvement and 231
232
PARTSEVEN:SELECTED
BIBLIOGRAPHY
beliefsscale:Developmentandtestingofa new instrument. J Fam Pract 1998;46:476-486. Holland JC, Kash KM, Passik S, Gronert MK, Sison A, Lederberg Baider L, Fox B. A brief spiritual beliefs inventory for use in q life-threatening illness.Psycho Oncol 1998;7:460-469. Mortally Wounded: Stories of Soul Pain, Death and Healing. New York: Touchstone/Simon &. Schuster, 1996. olcaba K. Holistic comfort: Operationalizing the construct as a nurse-sensitive outcome. Adu Nurs Sci 1992;15(1):1-10. arrold J, The Centerto Improve Care of the Dying. ind ding mean in^. In: Hand~ookfor Mortals: Guidancefor People Facing Serious Illness. New York: Oxford University Press, 1999, pp. 27-38. McBride JL, ArthurG, Brooks R, Pilkington L. The relationshipbetween a patient’s health experiences. Fam Med 1998;30(2):122-126. . Caregiving:The SpiritualJourney of Love, Loss and Renewal. New ey &: Sons, 1999. ism and palliativecare. Eur JPalliative Care 1999;6(5):166-168. ituality in Nursing: Standing on Holy Ground. Jones and Bartlett Publishers, 2000. ite J, Ceronskry C, Kreitzer MJ, Nickelson K, Drew D, Mackey meiners L, Guthecht S. Hope, spirituality, sense of coherence, and quality of life in patients with cancer. Oncol Nurs Forum 1996;23(10): 1571-15-75). Ross L. The spiritual dimension: Its importanceto patients’ health, well-bein Int J Nurs qualityoflifeanditsimplicationsfornursingpractice. 1995;32(5):457-468. Ruth JR, Carson V, Soeken KL. Religion and adult mental health: State of the science in nursing. Issues Ment Health Nurs 1995;16:345-360. Shea J. ~ ~ i r i ~ u a G l i Health ty Care: Reaching Toward a Holistic ~ u t u r eChica .
ing: How We Are Transformed spiritual^ As Die. §an Francisco: Harper, 1998. . Spiritual issues in palliative care. In: Doyle D, Hanks . Oxford Textbook of Palliative Medicine, 2nd ed. 0 versity Press, 1998, pp. 805-814. Spirituali~in Health Care Organizations. The Park Ridge nd spiritual well-being: Assessment andi~lte~entions. Qual Life Nurs Challenge 1993;2(3):71-79. Stiles M. The shining stranger: Nurse-family spiritual relationship. C a ~ c e rNurs
aler’s Calling:A Spiritualityfor Physicians and Other ssionals. Mahwah, NJ: Paulist Press, 1997. onen S, Niemi-wnttariJ, Tigerstedt I. Effect of spiritual opathic pain: A medical and psychological study.CZin .,I 1994;10:29~-302.
PART SEVEN: SELECTED BIBLIOGRAPHY 233
Taylor EJ, Ersek M. Ethical and+spiritual dimensionsof cancer pain management. ~ In: McGuire DB, Yarbro CH, Ferrell BR, eds. Cancer Pain M a ~ a g e m e n2nd ed. Boston: Jones and Bartlett Publishers, 1995, pp. 41-60. Young A, Leslie CM, eds. Paths to Asian Medical Knowledge(Com~arat~ve Studies of Health Systems and Medical Care). Berkeley: University of California Press, 1992. Ziegler J. Spirituality returns to the fold in medical practice. J Nut2 Cancer Inst 1998;90:1255-1256.
This Page Intentionally Left Blank
%to the Light” Q2000 N i l by Behner
This Page Intentionally Left Blank
On May 2 , 2000, the American Hospital Association ( forts of nine programs inend-of-life care and ann Circle of Life Award: Celebrating Inno~atio ealth Forum S~~mmit in Orlando, Florida, am is to change and improve care ported by a grant from The Robert is cosponsored by the American Medical Associa tion of Homes and Services for the Aging, and t zation. The three award winning programs each received They are: * Louisiana State Penitentia~Hospice Program * The Hospice of the Florida Suncoast *
Franciscan Health System West: Improving Care T
Innovatiuns in ~ n d - o ~ Care L ~ e(.cvww.edc.or of these three award-winning program in a series of two of these issues, Hospice in Prison and Intergene~a pice, feature the Louisiana State Peniten of the Florida Suncoast, respectively, and appea edited volume. The September 2000 issue ofInn ter Continuity of Care, featuresthe Francis proving Care Throughthe End of Life. This pro ~ s~ n ~ - Care: u ~ ~ ~ e coming, I n n u u a ~ i o in ~ e ~ s ~ e ~ Volume t ~ v e s 3, , published by .Mary Yo&. Six other programs were recognized wit with co~lnendation.These are: The Depa tive Care at Beth Israel MedicalCenter, Ca ter for Palliative Medicine, the SanDie Program, and Fairview Health Service pendix, we offer short summaries of all ni staff and based on each program’s applic visit reports. tion abouthow to apply for website at (.Fwvw.aha.org/circleofliEe/).
37
APPENDIX A: CIRCLE OF LIFE AWARD
The ~ouisianaState Penitentiary (IS rogram is an interdisciplinary team rogram designed "to provid alliative care to inmates housed at the state correctional ~ d c i ~at t Angola. y programincludesprofessionalstafftraditionally team in the free luding physicians, nurses, social found in a hospice ary, and ancillary personnel. The workers, chaplains, as well as bere LSP program is unusual that it also includes the extensive pa~icipationof specially trained inmate volunteers, who provide dying prisonerswith emotional supionship, and assistance with activities of daily living. Some inmates istrative s ~ ~ p to p the o ~ program in such areas as computer graphics, peer education, designof educational materials, and interpretation for deaf or patients and families. The presence of a hospice insidea maxin a state that hasthe death penalty is remarkable in itself.l especiallyinnovativeabout the ce Program7however,is the way hitfostersteamworkandrarecause between members of the opulation and the staff who maintain their world inside the prison walls. A prison's primary goal is to ensure the safety of the communi^, inmates, and removing criminals from the free world and maintainitution. By design, prisons are not places that encourrather discipline7s t ~ c t u r eand , sometimes rehabilitaionship between osecharged with maintaisecurityinprisons s long been characteriz extends to medical personnel7who are perceived . In an env~onmentin which the primary hnc* * atodds with personal choice, comfort,andfamily;nity, the m offers inmates, medical care providers, and security pertogether in a neutral zone, witha common goal
mates have become
APPENDIX A: CIRCLE OF LIFE AWARD
their family. Therefore, many inmates see their participation in gram as a way to prepare for how they t back something to others, a way of rep By necessity, prison i n ~ a t e sare se This means that at times of crisis du the support of others most, they are focus on palliation of symptoms, i needs of dying patients, has led to of touch for years, as well asto he mates. As a consequence, the Ang visitation policy of any inthe COLI release laws in Lo~isianamean solely because they are dying,th through providing special items, of prison security, whatever patientsi ~ e n tas i ~life-a~i The hospice program has hadan impact not only on family members outsidethe pris in contact with the ~rogram,i ily and friends. By respect in^ and by offering humane care Program has the ongoing sup many of the security staff. an in-depth exploration of
1. Maul1 FVV. Issues in prison hospice: Toward a mo in a correctional setting. Hospice J 1998:13(4):57
239
the
for the d e l i v e ~of hospice care
Largo, Florida 3 3 ~ ~ 0 The Hospice of the ~lorida S~ncoast is a c o m ~ u n i ~ - b a s e a comprehensive ing all of Pinellas County, Florida. It has and emotional and spiritual s~~pport services for anyone ness. The Hospiceof the Florida Suncoast isthe only licensed and human services system in this county inthe Tampa zens, where 26 percent of the residents are aged65 and 1200 patients daily and has worke~.with more t ception 23 years ago. The average patient len stay ofis 25 days. Curre rofessional an
240
APPENDIX A: CIRCLE OF LIFE AWARD
trained volunteers to provide a Both groups receive additional
based orientation patient-fa~ilycare lent of 24 hours of contact.
*
e InstitLlte of the Flo pice Foundation o
service, and s u p ~ o care annually, tha Thiswealthofrgsourcesofallkinds breadth and dept These services i
a l l o ~ sThe
offer an altern
tion with a person who dies suddenly-~het dental deatll, or illness.CFSP has handled more
ingful vol~lnteerservice, to strengthen their su toring process, and to affect their perception of s incl~deLifeti videos with te
ce to offer an ~nusual
APPENDIX A: CIRCLE OF LIFE AWARD 2
derly or ill members. In concert with these intergenerational and cross-faith efforts that seem to permeate cross-sectionsof the community, The Hospice also offers services to those in need in a wide rangeof settings. Currently, 57 percent of patients served live in their own homesor in the homes of relatives or friends. Since pice has had a residential program serving more thanpeople. 1300 Woodside is a 67-bed residential facility with 24-hour care in a for patients who are unable to remain in other living arrange this setting follow their own personal schedules and come and Vi Visitors have unlimited accessto patients. Hospice Woodside in 1997, is for t e ~ i n a l l yill people who have limited financi still capableof living independently with supportive care. Itis the first s ~ c housh ing of its kind anywhere inthe United States. The Hospice also has contracts and collaborative relationships with 88 of the 91 nursing homes in and works with more than 15 hospitals in the county to meet h needs for continuityof care. (See Part Three of this volume, Intergenerational Approaches to Hospice, for an in-depth explorationof the Hospice Teen ~olunteer Program.)
In 1997, a team of Franciscan H lth Services profess pilot project, entitled, ImproviCareThrough the Robert Wood Johnson Founda of-life care, the project was sponsored by the Institut ment (IHI). The overarching ical practice, so that terminally ill persons couldmak and life-closure choices consistent with their values. the best possible quality of life through relief of s and maintenance of functional capacity, while cultural, and religious values, goals, beliefs, and to accomplish this goalby identifying patients in the process, so that referral to appropriat sources could occur in a timely fashion. Conceptually and phy§ically, the pro ram is rooted in a p to patients, families, and care~iversof id terminal illness. Primary care physicians h §are a § k e ~ , ‘ ‘ ~ o u l tients seen in the last two ~ o ~ t and ied in the next ye
242
APPENDIX A: CIRCLE OF LIFE AWARD
“I would not be surprised,”are then targeted for this program.A licensed nurse, particularly hired for the end-of-life population, then contacts each patient and family to assess the patient/family/caregiver needs. Collaborating with the physician to create a planof care, the nurse coordinates numerous supportive services. A trained volunteer calls a set of patients each month and reports the needs of the patients, families, and caregivers to the nurse. A chaplain makes home visits to patients with spiritual and psychosocial issues. In sum, this program focuses on continuity of care and mobilizes existing resources by authorizing a nurse care coordinator to cut through red tape and shepherd each family through the health care system. Patients and families call one phone number to reach the specialty end-of-life nurse. The nurse in turn triages the needs of the patient and family, and communicates the requests to the primary care physicians. Then appropriate orders or clinic appointments or both can be made. Chaplains involved in the project observed a need to address issuesof grief andapproaching death among this group of patients and their families. They subsequently developed an additional program called, Let’s Talk, for seniors inthe community to meet in groups at local senior service centers and talkabout these issues, regardless of whether or not they themselves were suffering from life-threatening illness or participated in the original pilot program. The pilot program of Franciscan Health System West has been replicated in three additional Puget Sound clinics in the past year while continuing program development atthe pilot clinic. Twoof these new sites for the program are prhary care clinics in rural areas serving a large Medicare population, theand Conthird is an urban hematology-oncology clinic. (See Building Bridges for Better tinuity of Care. ~nnovationsin .End-of-l;ifeCare 2000;2(5) at (oirovw.edc.org/lastacts/) for an in-depth explorationof this program.)
i ~ i n ean ative Care Beth Israel Medical Center Russell K. Portenoy, MD, Chairman Department of Pain Medicine and Palliative Care First Avenue at 16th Street, 12 Baird Hall New York, Nu 10003 The Departmentof Pain Medicine and Palliative Care (DPMPC) at Beth Israel Medical Center is the first department-level palliative care program at an academic K. medical center in the UnitedStates,Under the leadership ofDr.Russell Portenoy, an internationally recognizedexpert in pain management and palliative care, the DPMPC has made significant strides in just two years in raising the clinical, educational, and research standards in the fields of palliative care and pain medicine. With specialized pain and symptom management services, the DPMPC’s unique palliative care model is based on combining the broad range of services t
APPENDIX A: CIRCLE OF LIFE AWARD
243
ally offered onlythough hospice. Thee divisions supply service:the Palliative Care ivision, which includes the Jacob Perlow Hospice; the Pain Division; and the Institute for ducati ion and Research in Pain and Palliative Care. Comprehensive services include inpatient consultations, ambulatory case manage~ent,access to a newly renovated inpatient unit, and the Jacob Perlow Hospice, which provides a unique palliative care drop-in program. Additional specialized programs in fatigue, S pain and symptom control, and sexual health and rehabilitation during chronic terminal illness are offered. Institute staff have developed a clinical pathway for the imminently dying patient that is being implemented hospitalwide. Care at DPMPC is provided by a highly skilled, interdisciplinary staff of physicians, nurses, psychologists, social workers, chaplains, and other health care professionals, as well as a large corps of volunteers. A leader in innovative training progra~sfor health care professionals and ancillary staff, DPMPC educational initiatives include a core course in palliative care, physician and nurse fellowships, national and international observerships, a weekly clinical case conference, weekly case-based teaching sessions, and a monthly research conference. The research staff conducts comprehensive evaluations of the DPMPC's clinical, educational, and research initiatives. Additionally, the DPMPCis committed to disseminating the its experiences and expertise to a national and international audience through ultirnedia Resource Center for Pain Medicine and Palliative Care and their website ( ~ . s t o p p a i n . o r g ) .
ca James Cimino, MD, Director Palliative Care Institute 740 Eastchester Road onx, New York 10461 ~oundedin 1899,Calvary Hospital is committedto staying on the leading edge of current advances in palliative medicine, particularly by ~~pholding the values of preservation of dignity and nonabandonmentof the patient andfamily at the end of life. Throughthe Palliative CareInstitute, Calvary Hospitaleducates and informs others about how to improve end-of-life care. The Hospital has affiliations with Columbia University School of Nursing and the School of Social Work, Our Lady of Mercy Medical Center, New York University School of Education, Health, and N~rsingA r t s Professions, St. John's University College of Pharmacy and Allied ealth Professionals, College of Physicians and Surgeons, Columbia University, The Albert Einstein College of Medicine, and The University of Medicine and Dentistry of New Jersey/Robert Wood Johnson Medical School. These affiliations enable Calvary to reach further into the metropolitan population. A special grant allowed the Palliative Care Institute to embark on a collaborative effort with the emorial Sloan-~ette~ng Cancer Center during 1998- 1999. The staff of Calvary Hospital includes physicians, nurses, dieticians, pharmacists,
4
APPENDIX A: CIRCLE OF LIFE AWARD
social workers, recreation therapists, technicians, and consultants, all experienced the surrounding culturally diverse community. Interfaith pastoralcare, family bereavement counseling, recreationaltherapy and a special patient-family advocacy department are an integral part of the hospital’s offerings. The comprehensive team is available to patients and their families 24 hours a day. The Clinical Review department conducts quality assessment and improvement studies throughout the year to measure quality of care? effectiveness of medication, and appropriate staffing. The Social Services department distributes? reviews, and chartsthe results of patient and family satisfaction surveys for every inpatient. Volunteer enrollment is 2 10 individuals, 90 percent of whom are from the surrounding Bronx: community. The innovations within Calvary Hospital’s prograrns include nutritional support, state-of-the-art pharmacological alleviation of pain, wound care, pastoral education and co~nseling,and numerous community-based support programs in such ereavement, grief, and human development issues. Calvary isone of only a h a n d ~ of l institutions in the United States that provide a completely restrainton patient and family-centered free environment for patients. The individual focus care distinguishes Calvary Hospital as a leader in spiritual and physical health at the end of life.
in advanced cancer care and reflecting
Cleveland Clinic Foundation Susan €3. LeGrand, MD, Director Palliative Medicine Fellowship Program. 9500 Euclid Avenue, T40 Cleveland, Ohio 44195 developed at the Cleveland Clinic Foundation in 1987 as a palliative consultation service to improve the care of cancer patients, the Harry orvitz Center began with one attending physician, one nurse, and one partsocial worker. Overthe next 11 years, it grew into a Palliative Medicine Proconsisting of a 23-bed acute care palliative medicine unit the andfwst ive program in the United States to provide clinical services, education, research, and training in palliative care. Fellowship training began in 1989 and was the first available in the United States. Second and third clinical fellowshi s were added in 1992 and 1998, respectively. The World Health Organization ) designated the PMP a national and international demonstration project in s to provide patient-centered care for patients with lifeeir families. Their mission includes advocating for pad providing ~ereavementcouns ourse of l~e-threateningillness r the patient has died, They use dedicated palliative
APPENDIX A: CIRCLE OF LIFE AWARD
2
medicine nurse managers to facilitate continuity of care and maintain a 24-hour hotline for patients and families. Unique features at the Horvitz Center include the use of music therapy; providing the family with cots, recliners, and showers in order to stay with the patient during his or her illness; and ensuring that the highest level of continuity of care is maintained.A focus on facilitatingthe best possible communication among patient, family, and caregivers is created by making sure everyone involved understands the status of the disease process.Staff and families discuss expectations, preferences, and goals for care. Additionally, the Horvitz Center has become one of the strongholds of education and research inthe field of palliative medicine. Ongoing education has been integrated into the daily functioning of the Horvitz Center. Physician education includes programs for medical students, residents, fellows, andRoxane Scholars. The center holds two major educational conferences per year, and the PMP offers trainingto numerous other health care professionals, including physician’s assistants, nurses, and chaplains.
Jan Cetti, President andCEO 43 11 Third Avenue San Diego, California 92103-1407 SanDiegoHospice (SDH) is a community-based program that provides quality physical, emotional, and spiritual care for the terminally ill and ongoing support for their loved ones. Serving about 325 patients per day through its extensive inpatient, hospice care, and home health services,as well as providing specialized care inthe areas of bereavement counseling and spiritual care, SDH has been meeting the needs of the San Diego community for more than 22 years. SDH is also dedicated to increasing the body of professional knowledge and education opportunities for end-of-life care providers-from physiciansto nurses, chaplains to volunteers, home health aidesto pharmacy students. Hospice services are provided in patients’ homes, skilled nursing facilities, local acute care hospitals, and in the SDH Inpatient Center. Innovative aspects of hospice care at this site include a high level of physician involvement, pharmacist specialists, teaching affiliations, integrative medicine, and specialized teams for children.SDH counts rural patients, Spanish-speaking patients, and skilled nursing facility residents among its patients. It also offers extensive bereavement care for both adults and children. Nine trained chaplainsof various faiths are on staff, and bereavement care is offeredto family members for up to 18 months following a death, regardless of whether or not the deceased was a partof the hospice program. SDH offers a specialized periwatal bereavement program for parents whose children willeither not make it to full term or will die shortly after birth. They also offer four age-appropriategrief groups for children.
APPENDIX A: CIRCLE OF LIFE AWARD
~ c c e s sto the hospice program is throu ment has been the focus of multiple ~ e ~ o r n l iance with regul~tionsoften makes it diffic
s e ~ patie~ts e with fatal chronic illnesses who refused or dec
APPENDIX A: CIRCLE OF LIFE AWARD
2
spita~s(one of ~ h i c his d educatio~ instit~tion), a hospice division. Inan a m ~ i t i o ~ s d their f a ~ i ~ efair s , vie^ has as-
road array of services and disci-
248 APPENDIX A: CIRCLE OF LIFE AWARD
technical and humanistic changes inthe areas of surrogate decision making, bereavement services, pain management, and hospice, to thebenefit of its patients, physicians, and health care community. Specifically, staff at Fairview have focused on pain and symptom managment, haveintegrated holistic therapies and spiritual counseling into treatment, and have encouraged patients and families to choose surrogate decision makers before the need arises. Involvement and support from the highest levels of management have contributed largely to this program’s successby providing leadership in policy, management, and funding. Operational support and recognition led to the creation of a director of palliative medicine. A 13-member interdisciplinary team made up of leaders in their own areas of the health system functions as a quality improvement team across all sites at Fairview. This team is comprised of a geriatrician, who is a long-term care medical director and palliative medicine physician; nurse managers representing critical care, medical surgery, and bone marrow transplant units; a social worker from a rural hospital;a social worker and marketing director from Fairview’s long-term care division; nurses representing other portions of the Fairview system, including home care and hospice, child-family, and performance improvement; and chap(CQI) lains. The Fairview initiative implemented a continuous quality improvement effort to collect data and feedback every two weeks onthe various change efforts. Using these methods,Fairview piloted more than40 separate interventions across the health system in the initial eight-month phaseof implementation.
7'hefollowing table is adapted by Tanya Tillman, liW? Ms. Tillman expanded the chart and has used this modified version in staff and inmate educational sessions. As the modified table shows,ident~yingand meeting the and needs of dying inmates is a challenge wrought with contr~diction~ pigalls that require diligence and daily self-evaluation. m e nurse's role as patient advocate is challenging in the prison setting. In this world where the men nurses care for are responsib~e for the disruption and ~ e s t r ~ c t i o n of so many lives, daily se~-evaluationof their own feelings and attitudes can assist health care providers in finding a healthy balance b e t ~ e e n their roles as co~rectionalemployees {and thus protecto~sof the prison ~ o m m ~and n ihealth ~ ~ care providers.
Need
Comment A
of se As a terminally ill patient be ins to be able to do less for himself, fear for his personal safety bec issue. He requiresassistance with activities living and protection. from violence and man by other inmates,
It is often a time for reuniting families aattime when the incarcerated patient feelshe has even lessto offer estranged lovedones. *
The loss of family ties maybecome the patient's est regret and an important focusof the team's intervention.
*
Members of the altered communityof the prison environment become the dying patient's f a ~ l yeven in the presence of traditional family. -
"_
. .
.
-
..
" "
1. World Health Organization. Cancer Pain Relief and ~ a ~ ~ i ~Care: t i vReport e of a ~~0 Expert C o ~ ~ i Technical ~ t e ~ , Report 804. Geneva: World Health. Orga~zation,1990.
250
APPENDIX B: TARGETEDRESOURCES AND TOOLS
Need
Comment
elon
The patientmay more readilyaccept assistance from another inmate thanhe will from staff.
(continued)
ove
ctio
act
*
Even simple, platonic gestures are often discouraged in a prison environment.
*
Simplehuman contact, such as touching a patient’s o hand or shoulderduring anassessment,is frowned upon but is a necessary pointof advocacy for your patient.
*
Frequently, our mutual fear of being misunderstood prohibits touch in the prison env~onment.
*
Our roles as captors and captives dehumanize a personand may convey the misconception that the patient does not require the same explanation you would expect togive afree world patient. When you convey this by not sharing information, you belittle the patient and promote distrust. As in any setting, compliance with treatment formaxi-
mum patient outcome (whether it be curative or palliative) depends on the patient’s clear understanding of his illness, whatis required, and the reasons forthe interventions outlining his best interests. The inmate patients’ status as wards of the state predetermines a greater responsibility forthe caregiver.
By accepting the person as a human being, you need not accept his crime. *
All personsdeservequalitycare
crimes.
~espectiveof their
APPENDIX B: HOSPICE IN PRISON 251
Need
~
~
~
~
e
~
t
A time of self-review, this may be
the first time the patient iswilling to accept responsibilityforhis actions, including his crime.He may identify this as an issue he needs to address.
*
How a person dies and the subject of advance care plan~ingare monume~taldecisions,especially to a person who is told when to eat, sleep, and work on a daily basis. He may findthe prospect of making these deci§ions ove~helming. e patient’s status as a ward of the state does not interfere withthe patient’s right to make medical decisions.
*
To survive in the prison culture, a man must have a measure of seciency to be considered “a man” by his peers. simple tasks such as eating and bathingarenolongerpossiblewithoutassistance, feelings of anger, fear, and depression are amplified.
Staff members are traditionally viewed as untrustworthy by inmates. 0
Inmate patients are initially viewed as ~ ~ n t ~ s ~ o ~ h by staff. “Us against them” orientation of the prison environment makes honest, effectiverelationships more difficult to maintai~. The inmate population may generally believe that the medical care its members receive is substandard. Inmatevolunteerscanbeeffectivemediatorsfor improved commL~nication.
APPENDIX B: TARGETED RESOURCES AND TOOLS
ice
Feat~red ~nnovator, Tanya Tillman, RN, hospicecase manager and inmate volunteer coordinator at the ~ouisianaState Penitentiary Hospice Program in Angola, ~ouisiana,developed these guidelines. Feel free to contact her for further information by calling her directly at (225’ 655-2266or 2262. The i~ormation rovided here is an overview of the concerns and concepts intean inmate volunteer group whose main objective is to facilif end-of-life care within the correctional setting. The outline is te thought processes aimed at problem solving and to examine e ~ a m ~ lof e sw a ~ to s accomplish your goal. EE
athing, meals, dressing)
sistance, compa~ionship spects other than directcare, such as programsupport, duties, peer education,
p o s s i ~ ~encourage e, inmates to su~gestways they can help. Tbey urages t e a ~ w o ber~ when both sides share
*
~ t a t eand federal laws ~nstitutionalrules
ide you somewhat-
s helpful to try to o will most likely be remain^^
l
APP~NDIXB: HOSPICE IN PRISON 253
gram for some time. You can do e sentence as a condiosingvolunteersalways s e c u r i ~of the of your visitors. eep in mind that your %ely incor~oratethe inmate’sfameraction your volunteers will have en andchildren) is a tthatcanguide ooking at the criteria you use for the your institution:
es given special privi-
E.
ion based on a selection process that is too re-
riteria include: may part ore than five years old,o
ast record of recurrent depression should orking with dying persons is not for everysion in those persons who have er the i ~ a t e ’ behavior s rehabilitated or not-for le or someone who has
APPENDIX B: TARGETEDRESOURCES AND TOOLS
r A. If the volunteers’ rolewill include assistancewith activities of daily living,
anurse or
assistantmay be the most approp~ateperson.Theinguidance from someoneowle edge able about physical who can assist the volunteers with ef may be your best choice. Choose a person s effectively. Some e volunteers, such m either the med-
rain more volunteers titutions will be able ; some will need the ity. Either way, it is ban a smaller group philosophy of hosnot have to be taught but once. ~ngoing is to establish how many teers be assigned to dually maybe more a1 preferences, perrences. Consider mates who care
stitution. This
APPENDIX B: HOSPICE IN PRISON 255
C. Consider your state’s policy and record on compassionate releases. Are your
dying inmates going home or are they dying in your facility? How many deaths have you had inthe past three years? What do your projected nmbers look like relative to AIDS, hepatitis B and C? What is the average age of your inmate population?Do you have a high percentage of lifers? D. Enlist the help of your inmate leaders. Call a meeting and give them basic information on hospice and the institution’s plan to improve end-oflife care. Provide them with information on whatthe volunteer role will be. Each institution has such leaders whether they are officially recognized or not. Buy-in on the part of the inmate population is important. Sources of leaders may include: Leaders of religious organizations, such as inmate pastors of formal churches Presidents of inmate clubs, such as Angola’s Lifer’s Association or Vets Incarcerated (these should not be confused with gang affiliations but are much like free world organizations, suchas Rotary clubs) Leaders of self-help groups, such as AA and NA Old timerswho have emerged as inmates wlzom the younger inmates listen to and who interact well with staff E. Choose your frrst group very carefully. If in doubt, do not include a particular inmate. You will not get a second chance to make a fzst impression
with your volunteers.Many people, custody and noncustody staff alike, will be watching and waiting for your plan to fail. Inmates within your population will be suspicious of the institution’s motives.If your attempt to establish a quality inmate volunteer group fails, you are not likely to be allowed to try this again any time soon. I;.
Compile a list of candidates for participation by peer referral from you inmate leaders, referralby staff, or written requests from inmateswho wish to participate. Establish a group of persons who will review records to eliminatepersons who areunsuitablebasedonyourcriteria.Record checks should include: Incarceration charge and initial housing date * In-house disciplinary records (has he been written up on rule infractions?) ,, Mental health history and current status * Living area (does the applicant live in a dormitory, or is he in administrative lockdown) * Sentence and length remaining on sentence * Current work assignment if any 0
6. The more names you sLart with, the larger your pool will be to choose
from. Use your criteria and your staffs knowledge of the inmates to eliminate those who are undesirable.
256
APPENDIX B: TARGETEDRESOURCES
AND TOOLS
H. Design an interview tool.What questions can be askedto tell you so thing about the inmates who are volunteering to participate? I. Have the inmates fill out an application. J. Review the application and choose candidatesto interview. task as if you were hiring staff and wantedthe best person K. The interview board should include: * The security officer who has 24-hour accountability for the unit where care will be provided, as he will be the security officer most involved with the process. * The person chosen as volunteer coordinator. Other people can be ad to the board, but the decision to accept an inmate volunteer appli should not be based on only one person’s e~aluationof records and interview. L. After records havebeen reviewed and interviews have been held, the nu ates who are appropriate and desirable will have lla~owedconsiderably. Have the members of your board confer privatelyto c plicants. en ~ *
d your~ finalnselections, ~ considerthe follo~ing
Is there varied religious, racial, and cultural re
in the interview group have a specific skill that would be helpfi~l toa patient or to the program? (Such as i~terpreterfor the deaf, literacy tutor, or inmate pastor.) e inmate present well inthe interview? I e interested in maklife care, or doeshe eone else com€ortable and improving en seem more focused on his own needs and i~pressingyou wit complishments? Is the inmate overly concerned with what he or she will getout of ticipatin~?
*Ifyou have inmates currently working on your medical units in any caa ~ emeet your criteria, they should begiven pacity whowish to p a r t i c ~ ~ and priority when choosing your volunteers because they already no^ the routine on the units. These inmates have esta~lisheda work ethic on the medical units. Free people will bemore accepting of their p~rticipationbecause these i n ~ a t e already s work on the units and havebeen m i n i ~ a l l y exposed to issues concerningpatient care. ers A. This area willbe guided by the duties the i n ~ a t e are s allowed to perform.
for TB should be ensured.(Even if you do thisas no dure; verify the docu~entation.) ~~
APPENDIX B: HOSPICE IN PRISON
257
C. Some programs require aVDRL screening (a test for sexually transmitted disease). Others require screening for patient’s a ability to 1
D. Consider earlyon what your program’s position will be concerning allowing a person with known HIV or AIDS to participate as a volunteer. The question will comeup, and it is best to address it early. Personally, it has been my experience that volunteers who can easily identifywith another person’s illness are sometimes the most effective volunteers. As long as the volunteer is healthy enough to safely participate, I would encourage institutions notto restrict those persons who are HIV positive or who have full-blownAIDS from participating.
Volunteer Cod3dentiality A. Interactions with the patient and the staff will lead the volunteer to be
privy to information concerning the patient’s medical diagnosis and condition. For this reason, staff need to solicit the patient’s written permission to share this information with the volunteer at the outset. B. The volunteer should be requiredto sign a confidentiality statement and be subject to dismissal as a volunteer if confidentiality is not maintained.
Volunteer Training A. Establish, with the assistance of your education providers, what the curriculum will be and how long it should take.
(The LSP program involves 40 hours of training, which we complete in one week-Monday-Friday, 8:OO AM until 4:30 PM)
€3. Duties assigned will also guide your training. For example, if your volunteers are allowed to assist with activities of daily living, they need information and instruction onhow to feed apatient, how to transfer a patient safely from bed to chair, and so on. C. Basic training information should include the philosophy of hospice, pa-
tient rights and responsibilities, volunteer responsibilities,orm mat ion on patient confidentiality, stages of grief, basic communication, what physical and emotional changes to expect from a patient at the end of life, near death experiences, how to sit with a patient and be nonjudgmental, particularly where religion is concerned. I>. State and national hospice and palliative care associations are excellent resources to consult when choosing the basic training guidelinesfor your volunteers.
258
APPENDIX B: TARGETEDRESOURCES AND TOOLS
hts to Consider
nteers be paid or unpaid? There are successful models that (1) do not pay volunteers and expect them to participate in addition to their assigned jobs, ( 2 ) assign volunteers on regular work assignment rosters and
pay them as they would for any other service provided, and (3) maintain a larger group who are not paid but a select few who have to earn the paid spots. Consider what your institutional d e s say about paid assistance, and also consider your institutional goal concerning how many inmatesthe institution expects to be working at any given time. Some institutional rules may prohibit having an inmate provide a service he is not paid for, whereas others, such as Angola, limitthe participation that can be provided by paid workers. Also, some institutions have difficulty finding jobs for their inmates, and others have more jobs available than they have inmates to fill them. A point to remember is that if there is no obvious secondary gain (for example, money) for assistingwith the program, you may find that the volunteers participate for the right reasons. Again, there are very successful models that make strong arguments for tangibly rewarding their volunteers.
onti Establish how often: * Your volunteers will meet for discussion and to receive inst~ctions(we meet monthly). Ongoing education will be provided (a good time to do this is at volunteer meetings). You will review each volunteer's continued participation (yearly is sdficient). 0
I encourage staffat
other prisons to network with other institutions throughout the country. There are many different models to emulate. Finding an existing model that will exactly meet the needs of your instit~tionwill not be possible. Careful consideration and trial-and-error will establish a volunteer program that meets the unique needs of your institution and the inmates you carefor. The National Prison Hospice Association and Volunteers of Axnerica can help you contact other institutions for a more comprehensive look at end-of-life care in prisons.
APPENDIX B: HOSPICE IN PRISON 259
3.
ei
ect
Copyright 0 2000 by Volunteers of America. Reprinted with permission.
responsible for growing numbersof ~ a t e with s terrninal esses. Each year, moreth 2500 men and women die in U S . prisons fromAIDS, cancer, and other natu~dlcauses. Patients may die alone, suffer L ~ e c e s s ~ lor y, highreceivesivemedicaltreatmentnotjustviedbyitslikelybenefitunless quality life careisinplace.eserecommendedstandardsofpract the conditions and expected prac s that will exist whena program. of h end-of-life care is present. They are intendedto guide correctional profession~sin assessing, roving plend-of-life corrections care in settings.
Several key terms are usedwhen discussing end-of-life programs. Forthe purposes ocument, the te defined s are as follows: x1
e
*
.
cal
supportive tal and services that care indi- an receives inthe last phase of life. treatment that enhances comfort improves and the quality life t h r o ~ ~ “the h com rehensive management of the physis chological, social, spiritual and existential needs.”l cific, programmatic model delivering for palliative care. ”2 red by any to o€ferthe “epitomeof palliative care.”2Charice incl~ldeuse ofan interdisciplina~team, direct provies, support for the family, and bereavement ogram, hospice has eligibility and admissions criteria. be licensed in its state to practice hospice care.
s choose to refer to their programs as hosure in order to use this name. Other pros as palliative or specialized care. These om the hospice model but address the comprehensive palliative care program. f-Life Care in Correctional Settings” is used to refer to this specialized set of standards. They were designed for prisons but may alsoprovide guidance for jails and community correctional settings where ates are being met.
spice S t a ~ ~ a o~f d~ s ~ awere ~ used t ~ as the sta~ingpoint for thesestan~ards.The format was drawn,with permission, a1 Association’s new performance-based standards. “Standards of Practice were developed by the Guiding Responsive Action for Corrections in End-oflife (GRACE) Project, a Robert WoodJohnson Foundation Promoting Excellence in End-of-Life Care initiative, administeredby Volunteers of America.
c
260 APPENDIX B: TARGETED RESOURCES ANDTOOLS
This document presents the standards, usingtwo performance-based terms:
a required or essential condition to be achieved or maintained . . . a stateof being, not an activity e: an action or activity that, if implemented properly, willcontribute to compliance with the standard : a statement that defines
CO
nts a
co~en~ations
These recommended Standards of Practice are just a beginning point in addressing expectations for quality end-of-life care in correctional settings. The standards were developed as part of the GRACE Project by representatives of 15 partnering organizations with input from a wide array of interested organizations and individuals. They will be tested and revised during the %year demonstrationproject. The GRACE Project Work Group continues to meet and plans to improve these standards on an ongoing basis. Comments and recommendations for revisionsto this document will be appreciated. They canbe sent to: The GRACE Project Volunteers of America 1660 Duke Street Alexandria, VA 22314 Phone: (800) 899.0089 Fax (703) 341.7001 E-mail:
[email protected] mvw.graceprojects.org CES
care
ative
is ava
ee
Practice 1A-1. Palliative care is available to patients in as wide a range of housing settings as health care and security can accommodate.
e needs of the patient an Practice 113-1.Plans for palliative care are based on a needs assessment of the inmate population, characteristicsof the physical plant, medical care capabiliother resources.
~ n t e r ~ ~ ~ clearn i ~ ~(IDTJ ina~ IDT assesses the patient’s needs and plans, delivers, and evalatient’s care and services.
. The IDT consists of appropriate
representativesof all d i s c i ~ ~ n e s
APPENDIX B: HOSPICE IN PRISON 261
that are significantly involved in rendering care.At a minimum, it consists of a physician, nurse, mental health representative, and chaplain. Othersmay serve T m e ~ b e r when s needed, including but not limited to dietitians, pharmacists,facilitysecuritystaff,avolunteercoordinator,apatient’sfamily, the patient, other caregivers, andothers, including volunteers,as appropriate. Practice 1B-4. A qualified health care professional coordinates the IDT. Practice 1B-5. The IDT consults with a qualzled, trained professional in the area of ethical medical care whenever ethical dilemmas arise in the care of patients and families.
~~a~of Care
6. A patient-centered,individualized plan of care is developed and ~aintainedby the IDT, in collaborationwith the patient. Practice 1B-7. A written plan of care is developed for each patient within 24 working hoursof admission. -8. Communicationconcerning the careplanandstatus of the patient is provided to the patient and to designated family, with consent ofthe patient .
Practice 1B-9. Care plans are reviewed by the IDT at least every 2 weeks or when the patient’s condition changes and are revised to reflect the changing needs of the patient and family. tice 1B-10. The IDT identifies and incorporates specialized professionals paraprofessionals to meet the specific needs of patients and families as tified inthe plan of care. Practice 1B-11. Advance careplanningisstronglyencouragedand r e ~ ~ i r for e d pa~icipationin specific hospice programs.
may be
~ a ~ ~ i aCare ~ i vServices e Practice lB-12. Themedicaldirector or designeereviews,coordinates,and oversees the management of medical care for all patients. ractice 1B-13. Nursing services are based on initial and ongoing assessments t’s needs by a registered nurse and are provided in accordance -14. Nursing services are available 24 hours a day,7 days a week to meet patients’ nursing needs in accordance with the plan of care. Practice 113-15. Counselingservicesarebasedoninitialandongoingassessa qualified counselor or social ments of the patient’s and family’s needs by worker and are provided in accordance with the IDT’s plan ofcare, using com~ ~ n iresources ty as needed.
262
APPENDIX B: TARGETEDRESOURCES AND TOOLS
Practice 1B-16. Spiritual care and services are based on an initial and ongoing documented assessment of the patient’s and family’s spiritual needs by a qualified chaplain memberof the IDT, using community resources as needed. Practice 113-17. The pharmaceutical needs of patients are met, consistent with all applicable regulations and acceptable standards of practice, and patients receive coordinated and accurate communication, information, instruction, and education about their medication, medication profile, and the results of medication monitoring. Practice 1B-18. The IDT assesses and plans nutritional care meeting the unique nutritional needsof each patient.
with the goalof
Practice 1B-19. Diagnostic services comply with all applicable laws and regulations and meetthe needs of the patient. Practice 1B-20. Quality care and services are delivered in a manner that is consistent with cornunity standards. Practice 1B-21. The physical environment meetsthe needs of patients and caregivers: to the greatPractice lB-22. Pain andother symptoms are assessed and alleviated est extent possible.
Standard 1C: Patient care is not interrupted by changes of signment within the facility,by transfer to other facilities, or from the system. Practice 1C-1. Services and care are available, consistent with the treatment plan, 24 hours per day, 7 days per week. Practice 1C-2. Care is fullycoordinated to assure ongoing continuity forthe patient. Practice 1C-3. Transfers and releases are planned and managed in a manner that promotes coordination and continuityof care for patients.
Standard 1D: Eligible patients receive care and services nity upon discharge. Practice 1D-1. Every patient is evaluated to determine eligibility for medical release, furlough, medical parole, compassionate release, and other mechanisms for allowing the patient to return to the community for care and services. Practice 1D-2. Patients who are potentially eligible for release are assisted, expeditiously, with plans and arrangements for community care.
Standard 1E: Palliative care is not denied to patients tinue curative treatment. Practice 1E-1. Patients who are receiving active or aggressive treatment of their illness are not excluded from palliative care programs and services.
APPENDIX B: HOSPICE IN PRISON 263
contractors, volunteers, patients, and families are caused by the physical environment. Practice 2A-1. Staff is prepared for the demands of a disaster that has a negative pact on or severely limits the institution's operation. Practice 2A-2. The end-of life program meets all federal, state, and local laws, regulations, and codes pertainingto health and safety, especiallythe applicable edition of the Life Safety Cod'e of the National Fire Protection Association. Practice 2A-3. A plan for fire safety and prevention is developed, implemented, and evaluated. Practice 2A-4. Medications and nutritionalproducts are properly stored and prepared. Practice 2A-5. Facilities provide a safe and secure setting for patients, families, volunteers, and staff.
contractors, voluhteers, patients, and families are arm caused by themselves or others. Practice 3A-1. A plan for reporting, monitoring, and following up on all adverse incidents is operational. Practice 3A-2. There is a written suicide prevention and intervention program that is reviewed and approved by a qualified medical or mental health professional. Allstaff with offender supervision responsibilities are trained in the implementation of the suicide prevention program.
receive care and services in the lowest custody ation where appropriate health care services can ractice 3B-1. Services and care are available to patients in a varietyof custody settings to ensure that patients are not subjected to a higher level of custody and controlsolely to gain accessto needed services and care.
ative care is available to inmates with terminal illness security level, custody classification, crime committed, story, age, gender, nationality, race, creed, sexual , diagnoses, or ability to pay. Practice 4A-1. Written program admission criteria prohibit discrimination in accepting referrals.
264 APPENDIX B: TARGETEDRESOURCES AND TOOLS
: Care and
services comply wit
.
Practice 4B-1. Codldentiality of orm mat ion related to patient care ismaintained. Practice 433-2. Patients havethe right to revoke hospice election ata any reason.
eds for We review, sure, and for human contact are met, Practice 5A-1, Psychosocial services assist.the patient to avoid isolation, closure, find emotional peace, gain acceptance, make connections as desired, and receive human contact. Practice 5A-2. Psychosocial and family support is available to inmates with terminal illnesses. Practice 5A-3. Patients are providedwith assistance to locate and contactfamily if they chooseto do so. Family members are assistedwith visitation plans. Practice 5A-4. Psychosocial and spiritual care are available 24 hours days a week to meet the needs of each patient.
a day, 7
Practice 5A-5. Patients are allowedto define whom they considerto be “family” and to limit or decline contact. Practice 5A-6. ‘Visitationrules for patients maximize access for family and significant others, including other inmates. Practice SA-7. ‘Visitation is held in a setting that is appropriate to the patient’s condition. Practice 5A-8. Volunteers who provide psychosocialsupport and other services do so in accordancewith the patient planof care. : Feelings
of loss experience ing the death of a patient
Practice 5B-1 Deathsthat occur in the correctional facility are handledwith the utmost respect and compassion toward the patient andfamily. a defined program in Practice 5B-2. Bereavement services are provided through order to help patients, families, volunteers, staff, and other inmates cope with the losses thatoccur during illness and afterthe eventual deathof the patient. Practice 5B-3. A plan of bereavement care for families and caregiversident~les bereavement problems and needs, interventions, goals, and outcomes and is developed and documented for families and caregivers. Ongoing care for family in the community may include referrals to community agencies e~L~ipped to provide bereavementsupport and counseling.
APPENDIX B: HOSPICE IN PRISON 265
Practice 5B-4. Bereavementeducation and supportive service are offeredto the larger correctional community. Practice 5B-5. A mechanism to evaluate bereavement services ona regular basis is maintained.
6. Ad~nistrationand Management atient care and services comply with professio expectations. Practice 6A-1. The program accurately represents its servicesto the institutional community, inmate families, and the public. Practice 6A-2. All persons involvedwith the program acknowledge andrespect each patient’s and family’s values and beliefs regarding end-of-life issues. Practice 6A-3All persons involved withthe progrm maintain professional boundaries and appropriate relationships with the patient, family, and volunteers. Practice 6A-4. Patients and their families areprotected from abuse and exploitation. : Care and
services are delivered with the consent of the patient. Practice GB-1. Patients will be involved in all decisions regarding their treatment and services.
~tandard6C: The program is administered efficiently a
Or~a~iza~io~ Practice GC-1, End-of-lifeprogramsandservices aremanaged by aclearly defined organizational structure that identifies the roles, res~onsi~ilities, and authority of every stakeholder and facilitates participation in decision makin by individuals closestto an issue or process. Practice GC-2. Theprogram’smission, dures are clearly described.
purpose, vision,policies,and
proce-
Practice 6C-3. There is a process that facilitates annual review of the program’s mission, purpose, vision, policies, and procedures.
Compliance Practice GC-4. Theprogram’sleadersensurecompliance legal, and regulatoryrequire~entsand standards.
~
~
~
aof I ~n f oe ~ ~~ a tei o ~
with professional,
tP l a ~ ~ i n ~
Practice 6C-5. The progra~’sleaders ensure effectiw strate resource ~ a n a ~ e m e n t .
266 APPENDIX B: TARGETEDRESOURCES
AND TOOLS
Practice 6C-6. Information needed to operate the program efficiently is identified, collected, and maintained in a manner that respects the patient’s co dentiality. Practice 6C-7. I n f o ~ a t i o nis collected and disseminatedto appropriate indivi uals in a timely manner. A comprehensive, timely, and accurate record of services provided inthe institution is maintained. Practice 6C-8. Information isprotected against loss, theft, and dest Practice 6C-9. Staffhasaccess bereavement.
to current information on alliative careand
Practice 66-10.There is a well-organized review and improve is implement~dthro~lghoLltthe program, which is suppo administrator. Practice 6C-11. The end-of-life quality improvement program is partof an institutional program for improving performance. impleme~tatio~ of Practice GC-12. Theplanning?development,and mance improvement activities are comprehensive and colla~orative. Practice 6C-13. Performance and ou program ~ n c t i o n are s collected, and ractice 6C-14. Actual improvements in processes or outcomes as a result of the performance improvement activities are demonstrated, and the improvements are maintained over time.
Practice 6r>-1. Thereareadministrativepoliciesthat de responsibilities of all staff, contractors, and volunteers.
e the rolesand
Practice 6r>-2. h appropriate number of qualified health care paraprofessionals, and volunteers is availableto meet the unique care needs of the program’s patients. 1 staff receive orientation, t r a i ~ g development , op ties, and cont~uinged~lcationon end-of-life care appropriate to their responsibilities. There is continuous education for staff, contractors, and ~olunteers.
-4.A relationship exists with comm~lnityhospice ~rogramsthat promotes shared training? education, and consultation.
-5. A competency assessment for all staff and volunteers respons for providing patient care activities is in
APPENDIX €3:HOSPICE IN PRISON 267
Practice 6D-6. Staff and volunteers reflect the diversity of the patients served, whenever possible. Practice 6D-7. Adequate supervision and professional consultationby qualified personnel areavailable continuouslyto program staff and volunteers.
Vol~nteers Practice 6D-8. Caring volunteers are providedwho are specially trained in the care of the patient and in other aspects of the program’s operation and who are capable of assisting patientswithout making value judgments. Practice 6D-9. Volunteers, whether they are inmates or are from the community, receive specialized training related to caregiving in a correctional setting. Practice 6D-10 Volunteers meet as a group monthly,or more frequentlyif necessary, to receive clinical supervision andsupport.
Definitions are adapted from the National Hospice ~ r g a n i ~ a t i3o nStandards of Practice. Potentially life-prolonging treatments.
~~i~~ Theongoingprocess of structured discussionand documentation of health care decision making that involves the patient, preferably with consultation with his or her physician and support of a family member or friend appointedby the patient as proxy decision maker. ctive An instruction,such as adurable power of attorneyfor health care, a directive pursuant to patient self-determination initiatives, a living will, or an oral directive, that either states a person’s choices for medical treatment or, in the event the person is unable to make treatment choices, designates who will make those decisions. care Services provided to help patients, families, and caregivers cope with the losses occurring duringthe illness and death. iver Any person, compensated or uncompensated, designated to provide emotional support or physical careor both to a hospice patient. t res~scitate(DNR) orders Orders written by the patient’s physician that stipulate that cardiopu~onaryresuscitationwillnotbeinitiated or performed inthe event the patient has a cardiacor respiratory arrest.
care Medical care and supportive services that an advanced disease receives in the last phaseof life.
an individual with
Fa Individualsrelatedbytiesof blood,legalstatus,oraffectionand who consider themselves a family unit. For the purposes of these standards, this can include other inmates.
268 APPENDIX B: TARGETEDRESOURCES
AND TOOLS
Holistic care Care that focuses on the individual’s physical symptoms and the emotional and spiritualconcerns of the patient andfamily. Informed consent A process in which information that specifies the type of care to be provided andthe potential and actual risks and benefits of a given type of care is exchanged between the program and the patient. Based on this information, the patient agrees in writing to the care offeredby the program. Interdisciplinary team (ID”) Representatives of disciplinesinvolvedin the patient’scare,includingphysician,nurse,counselor,chaplain,and others as needed. Interdisciplinary team meetings Regularly scheduled, periodic meetings of specific members of the interdisciplinary team to review and confer about the most current patient and family assessment, evaluate care needs, and update the plan of care. Mental health representative Social worker, counselor, psychologist, or other professional with responsibility for mental health consultation or referrals. Palliative care Physical, emotional, and spiritual treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life. Patient An inmate receiving palliative care services. Patient-family as unitof care A philosophy that asserts thatthe impact of terminal illness on both the patient and family is acknowledged and the patient’s and family’s needs are considered in developing the plan of care. erfomance improvement Planned organizationwide activities that continually evaluate the performance of processes and outcomes within a program to improve the overall services provided and meet and exceed the patients’ andfamilies’ expectations. Plan of care An individualized plan, based on patient needs and preferences, that identsles services to be provided. Program’sleaders Individuals who arecharged with the responsibility of implementing the end-of-life care program’s mission, vision, goals, and strategic plans. Psychosocial support Activities designed to meet the psychological and social needs of the patient. Qualitled person A person with the required education, training, and esperience to meet job-specifk legal and licensing requirements who demonstrates the sensitivity to address the unique needsof the inmate-patient and family. Team coordinator A qualified health care professional responsible for coordination of assessment, planning, and implementation of the plan of care by the interdisciplinary team. Terminal illness An illnessthatusuallyresultsindeathwithin 1 yearafter diagnosis or as a progression inthe course of the disease, in the opinion of a qualfled medical professional.
APPENDIX B: HOSPICE IN PRISON 269
ed by the program who provides services to the program enstrate monetary compensation. Volunteers shall be d, whether mates or cornunity vol~teers.
Force on Palliative Care. od Johnson~ o u n d a t i o ~ , ice and palliative care: A parting of the ways or a five Med 1998;1 :166. ospice ~rganization.Hospice S t a ~ ~ a r of d s~ r a c t i ~[ de r a ~. ] lingospice ~rganization,April 1999.
11, exists to promote hospice temiprospectdying of prison. in goal is fessionals in their continuing efforts to dearures and management programs. Several ticles and i n t e ~ e w about s the Louisiana State Penitentiary os ice Program, inotos, are cLlrrently posted in the newsletter .npha.org/ at
ates and those
ca's communi~-ba§edservice organi~ationsoffer more than s that help people, including children, youth, the elderly, omeless, people with disabilities or mental illness, and exoffenders returning to society. The Guiding Responsive Action for Corrections at CE) Project, funded by The Robert Wood John§on ~oundation, mLlnity hospice standards in end-of-life care for ceprojects.org) for details.
Legal and ~thicalIssues Raised by IV/A.IDS in Prisons is a page within this site that includes access to the publis d report HTV/A.IDS in Prisons: ~ i n a Report l ber 1996); see (~.aidslaw.ca/elements/priso~inde~E.html).
1270 APPENDIX B: TARGETEDRESOURCES AND TOOLS
Center on Crime, Communities & Culture: A project of the Open Society Institute of the Soros Foundations Network (www.soros.org/usprograms/cccc.
The goal of the Center on Crime, Communities & Culture is to create a better understanding of and support for effective and humane responses to criminal behavior and victimization. The Center seeks to turn the current national debate on crime into an opportunity to reinvigorate basic principles of individual rights and responsibilities, bolster community integrity, and promote social innovation. The Center works toward this goal by seeking and supporting outstanding and innovative programs in the field of criminal justice, by performing policy and research work in areas of national and internationalimportance, and by providing academic andresearch fellowships to individuals committed to becoming leaders in criminal justice. The website includes recent reports on research, a library catalog with an online search engine, and information about grants and fellowships.
me:
APPENDIX B: INTER~ENERATIONA~ APPROACHES 271
Part Three: Intergenerational Approaches Ice A. TOOLS FROM CONTRIBUTORS 1. The HospiceLife Review Form. Adapted from Barbara Haight’s Life Review and Experiencing Form.
Copyright 0 2000 by The Hospice of the Florida Suncoast. Reprinted with permission. The Hospice LSe Review Form
Patient’s Volunteer’s name: Counselor’s What is it that you are hoping to accomplish with your life review?
With regard to the questions on the Hospice Life Review Form, would it be more helpful if I: a. Forgot about the questions and just listened attentively? b. Interjected a question here and there? c. Used the questions to help guide your recollections?
Is there anything that you would rathernot talk about?
At what point in your life story would you l&e to start? (The questions are arranged chronologically.)
Childhood
0
What do you remember about when you were a young child? What was life like? Who took care of you? What were they like? Did you have any brothers or sisters?If yes, what was eachof them like? Where did you live?
272
APPENDIX B: TARGETEDRESOURCES AND TOOLS
Adolescence
What do you remember about beinga teenager? Where did you goto school?What was your school like? Who were your closest friends? Was there someone you especially admired? What was your relationship likewith your parents? Were there grandparents, aunts, uncles, cousins, or others whom you were close to? Who was your “first love?” What was the most unpleasant thing about being a teenager? What was the best thing about beinga teenager?
*
* * * 0
0
*
* *
* * * * * 0
*
0
What was life likefor you in your20s and OS? What kind of person were you? What did you enjoy doing? Did you go to college? Was there someone you shared your life with? How did youmeet? What kind of work did you do? What were some of the challenges you faced in your adult years? IYho were your closest friends? What were some of the defining moments in your life? Where did you live in your adult years? Did you havechildren?What can you remember about each one? a part of? If yes, is this an important Is there a faith tradition that you are part of your life? What are someof the significant historical eventsthat you remember?
Gener * *
0
0”
*
*
What are your greatest achievements? If you were going to live your life over again,what would you do differently? The same? What wasthe unhappiest periodof your life? What did you learn from it? What wasthe happiest periodof your life? What were themost dif3cult things that you have had to deal with in your life? Tell me about your experience living with a terminal illness or coming to terms with your own mortality. Do you have anyother words of wisdom that you would like to pass on?
APPENDIX 13: INTERGENERATIONAL APPROACHES
.
273
274 APPENDIX B: TARGETED RESOURCES AND TOOLS
Listeners
. . . Listen with Love.
Copyright 0 2000 by St. Thomas Hospice. Reprinted with permission.
Listeners
*
*
*
. . . Liste
Your body language suggests that you have the desire to Listen Be attentive Makeeye contact Sit closely Listening posture Open body position AC O ~ R S A ~ O N
Questions having no fixed answer or limits and elicit: *
Feelings Memories Explanations Personal experiences Interpretations
These answers will teach you about their experiences. AC
GE
YOU H
(Uh huh, I see, really! Tell me more
. . .) -
APPENDIX B: INTERGENERATIONALAPPROACHES
275
Copyright 0 2000 by St. Thomas Hospice. Reprinted with permission.
It takes work and self-control.We can lose interest. Suppressing our urgeto talk can be hard. We need to be silent. Set aside our own needs. Taboos of Listening
0
*
Do stay focused Do be mostly silent Do follow Do be receptive Do ask open-ended questions:
,. * 0
How does that make you feel? m a t is that like for you? Can you tell me more about that? m a t do you think that means? How are you handling that? Can you explain that to me? How were things different before?
Don’t lead Don’t judge Don’t interrupt Don’t advise Don’t say “I know how you feel.” “Don’tfeel that way.”
276
APPENDIX B: TARGETED RESOURCES AND TOOLS
unior ~olunteerServices. Copyright 0 2000 by St. Thomas Hospice. Reprintedwith permission.
JuniorVolunteersworkunder the supervision of the JuniorVolunteer Coordinator and the Hospice Office ~ ~ n a gin e rco~aborationwith m e ~ b ~ r s am.Theymayprovide support and c o ~ ~ a n i o n s h ifor p ies or help with other neededtasks, which arelisted
APPENDIX B: INTER~EN~RATIONAL APPROACHES 277
6. Teen Volunteer Live Review Project. Copyright 02000 by St. Thomas Hospice. Reprinted with permission.
~
S * *
* * * 0
* *
* *
S
~
O
~
S
Who were the first family membersto settle in this country?
What brought them to the United States? What stories did they bring with them? What isthe greatest lessonyou learned from yourparents? Tell me about yourfamily of origin? (mother,father, siblings) VVhat is your favorite memoryof your family times? Who was your best friend? Tell me about him or her. What are some fads that you remember from your past? Tell me about a historical event that had an impact on you. What is the most wonderful thing that ever happened to you? What is the best advice you ever received? What advice would you give to young people today?
278 APPENDIX B: TARGETEDRESOURCES
TheHospiceof includearange resources.
AND TOOLS
the FloridaSuncoastservesPinellasCounty,Florida.Thesite of informationabout hospice, trainingmaterials,and other
nst Cancer: Milanese ed.or~LICT/?~de~.ht The Italian website of this nonprofit organizationhas a description in English of the VolunteerCode of Conductaswellasinstructionsforvolunteersat (mvw.qlmed.org/volunteer/index.htm) and many articlesin Italian.
Cor~oration for National Service This U S . organization works with governor-appointed state commissions, nonprofit organizations, faith-based groups, schools, andother civic organizations to provide opportunities for Americans of all ages to serve their communities. Their three major service initiatives are Americorps, Learn and Serve America, and the NationalSeniorServiceCorps.LearnandServeAmericaoffersresourcesfor teachers, school administrators, and others interested in developing service learningprojects.Grantapplicationandguidelinesareat (mvw.cns.gov/learn/ resources/index.html).
eneration Connection Society ( a s )
The Generation Connection Society(GCS) is a Canadian volunteer nonprofit society whose purpose is to develop educational programs and resources that foster positiveintergenerationalcommunication,helpincreaseself-esteem,andpromote greater personal and social responsibility. This site offers an extensive list of documentary videos covering many intergenerational issues and developments at (mvw.genconn.bc.ca/videos/videos.html) s Together: ASI Intergenerational Studies Program ((5") du/~ucsur/GT.htm)
Generations Together(GT) is an internationalcenter for intergenerational studies within the University of Pittsburgh's Center for Social and Urban Research (UCSUR). It isdedicated to the development and understandingof programs that bring the young and the old together to share experiences that promote mutual growth and foster understanding between the generations.
APPENDIX B: INTERGENERATIONAL APPROACHES 279
Generations United (GU) A national membership organization in the United States focused solely on promoting intergenerational strategies, programs, and public policies,GU represents more than 130 national, state, and local organizations representing more than70 million Americans and isthe only national organization advocating for the mutual is an extensive listof relatwell-being of children, youth, and older adults. There ed websites within this site( ~ at. g ~ l . o r ~ m e m r e l a t e d s i t e s . h t m ) .
Intergenerational VideocIssues of Aging Part of the Library Media Project (~.~bra~me~ia.or~~ntergen-agingl.ht~) The John D. and Catherine T. MacArthur Foundation Library Video Project created the first public library, low-cost, high-quality video projects. The MacArthur Library helpedestablishserious,diverse,andinformativevideocollectionsin public libraries inthe United States. Although no longer grant-funded, The Project continues to build access to information and education throughthe development of a consortium of independent film and videomakers with the partnership of U.S. public libraries. At this site, find links and access to all the Library Media Project’s videos on intergenerational issues.
Temple University Center for Interg~neratio~al Learning (~.tem~le.edu/C~/) TheCenterwascreatedin 1979 to fosterintergenerationalcooperationand exchange. The Center offers training and technical assistance, disseminates mateInterchange, is rials, and has developed cross-age programs. Their newsletter, available online from the Resource Materials page. The spring 1999 issue entitled IntergenerationalExchange: A GlobalPerspective reports on interg~~erational programsin the UnitedKingdom,France,Japan,Singapore, the Dominican Republic, Bahamas, Guatemala, Botswana, and Tanzania.
280
APPENDIX B: TARGETEDRESOURCES
ANDTOOLS
s r Palliative Care The W C was founded with 40 individual members in 1988. It is now a federation of national and regional societies of palliative care, representing over25,000 individuals across Europe and other parts of the world. The website serves as an information source aboutthe EAPC and its activities, including descriptionsof publications and congresses. The website also offers a directory of participating organizations around the world, including contact names and addresses. Many resources areavailable in French and English, and congresses offer s ~ ~ t a n e o interpretation us of all sessions. A number of Innovations’ editorial board members play leadership roles in MD, PhD, who is the president. this organization, including Stein Kaasa,
EJPC is the official journal of the European Association for Palliative Care and is the current and back published six times a year. This website posts abstracts from issues of this print journal, as well as offering an international calendarof palliative care events. ativos (SECPM)
This is the website for the Spanish Association of Palliative Care; all content is in Spanish. Extensive inforrnation on the association as well as a clinical guideto palliative care, Cuidados Paliatiuos: Recomendaciones de la Sociedad EspafZola de Cuidados Paliatiuos (SECPAL), can be found at (mj-ww.secpal.com/guia.html).Ac(w.secpal.com/ cess to the journal Medicina Paliatiua isalsoavailableat revista.htm1).
ative Care Progra eo%) A n extensive palliative care site for both professional and nonprofessional audiences, offered by the Division of Palliative Medicine, Department of Oncology, University of Alberta, Edmonton, Canada, and The Edmonton Regional Palliative Care Program. Content includes clinical i~ormation,patient assessment tools, cancer material, and linksto related resources.
This site includes information about the hospice, its services, upcoming events, and professional development opportunities.
APPENDIX 13: INTEGRATED MODEL
2
The website provides an overview of the organization and its mission and information on events, activities, publi~ations,and products of MHPM.
Established by The Robert Wood Johnson ~oundation promote to wider accessto excellent palliative care in hospitals and health systems in the United States, the Center aims to provide assistance in the planning, development, and implementation of hospital-based and health system-based palliative care programs. This site includes a variety of resources and materials.
This site is hosted by the Centre forMedical Educationat the University of Dundee in collaborationwith the U.K. charity, the Cancer Relief Macmillan Fund.~ntended for an audience of medical professionals, this site has an ment of advanced cancer. Content includes pain managerne s symptoms, communication issues, and emotional and their loved ones.
ly hospice and palliative nurses’ prof~ss~onal a i ~ o ~ a t i o e~periences, n, and i lties of hospice and palliative nurs mote hospice and palliative nursing research,
is a n o n ~ r ointe~ational ~t org~ization ement of palliative care worldwide by their own model of palliative care provision and not be e more approp~ateto affluent countries.IAHPC is curre era, M.D. Readers can join the IAHPC at this website as well as accessits many resources. These include World Palliative CareReports,which are short summaries of state-of-the-artpal~ativecare inspecifk countries, a monthlynewsletter, an extensive ethics page, updates on PC activities,andlinks to key p~liativecare journals and organizations.
282
APPENDIX €3:TARGETEDRESOURCES A N D TOOLS
ati ion^ for Council
ospice ice Specand cil.org.uldindex.
The Council is the representative and coordinating body for all those working in hospice and specialist palliative care in England, Wales, and Northern Ireland. The website provides information onnmber a of publications on hospice care intended both for the general public and for professional care providers, including a directory of all hospice services inthe United Kingdom.A n excellent sourceof links and palliative care resources worldwide, this site includesthe ABC of Palliative Care, a compilation of key articles published inthe British ~ e ~ i c a Z ~ o u r between na2 Sep~~/info~~at. tember 199’7 and February 1998 at (www.hospice-spc-council.o~g. ion/abcofpc.htm).
Hospice and Palliative Care *or@) Formerly the NHO, this is the largest nonprofit membership organization representing hospice and palliative care programs and professionals the United in States.
Palliative Medicine Program at the ( ~ . m ~ . e ~ u / p a ~ e d ) This site offers a variety of educational services and information for health care professionals about pain management and end-of-life care.
Universi
of Ottawa Institute of P
The University of Ottawa Institute of Palliative Care is a Canadian academic center for research and advanced interdisciplinary education in hospice and palliative care. This site contains background information on the Institute, general information about Canadian palliative care, and access to two newsletters (Pall-Connect and News Brief> for health care professionals. The sitealso includes an activeconferenceareaanddiscussionforumfor the Canadianpalliativecare professionals.
APPENDIX B: MEASURINGQUALITY
283
c Scale (POS): A Pote
ative Care Copyright 0 2000 by Dr. Irene J. Higginson.
As a result of funding for 15 months from the National Audit Office of the NHS Executive, we have completed the initial stage of the development of a
*
0
national tool to be used inthe audit of palliative care. Such a tool was needed because there is currently no generic tool that can assess the outcomes (includingthe quality of life and care of patients andfamilies) of palliative care. a small numExisting tools and measures had usually been developed in only ber of settings, were often designed for patients who were not in the palliative stage of illness but earlier stages andwere able to complete complicated questionnaires, and often missed important components of palliative care, such as family needs. The project involved a systematic literature reviewof existing outcomes and quality of life measures and then a collaboration among 10 centers throughout England and Scotland to agree on the format of and pilot the PO§. The centers included inpatient l-llospice care, hospital palliative care teams, outpatient care, general practice, and home care. The PO§ measure has takencomponents that have appeared to work well in earlier measures and includes aspects concerned with pain and symptom control, patient and family psychosocial needs, and communication and information. The PO§ has been pilotednow in over400 patients over6 months. Early testing suggests that it appears to be valid and can be used by patients and, if patients become too unwell to complete the form, by trained staff. It is responsive to change, can detect service failings and successes, and is reliable in a small groupof patients whose condition remains stable.
We would like to further develop this tool for wider use, particularly in general settings, such as hospitals and hospices.We believe that it has potential for a national audit tool to assess palliative care for patients prospectively. We would develop a training package to accompany the tool, which would helpstaff to make better assessments of patients and their families and monitor change. We would whether these resultedin improvements assess if changes in practice occurred and of patients and families. We already have a register of services wanting to use the to continue the project and measure. The groupof 10 collaborating centers is keen if core funding becomes available. will act as local foci for its further development
APPENDIX €3:TARGETEDRESOURCES AND TOOLS
iative Care ~ u t c o m eScale (PQS) is copyrighted. However, you are it to your local circumstances, free to use it in full or as individual items, adapt or reproduce it without charge providing that you complete the following registration form and a ree to the fo~owingconditions. 0th The Palliative Care Qutcome Scale and Professor Irene will be ac~nowledgedin any publication, re orts, or oral presentations. ed for others, you undert to ensure that they agree ration form and return this to Professor 11 not be sold in either its ori
agree to the above conditions. Name: ddress:
a1 or adapted form.
to
ue
APPENDIX B: MEASURINGQUALITY
285
e Copyright 01998 by Irene Higginson. Reprinted with permission.
name:
No:
Patient Date Care setting:
of birth:
Date:
No:
Please answer e following questionsby tickhg the box next to the answer for you. Your answers will help us to keep~ p r o v your ~ g care and the care of others. Thank you. een affectedby pain?
able to think of anything else other symptoms, e.g., nausea, c
0 2 ~oderately ave you been feeling anxious or worried about your illness or treatment? 0 0 No, not at all 0 1 Occasioaally 0 2 Sometimes-affects my concentration now and then ost of the time-often aEects my concentration 0 4 Can’t think of a n y t ~ i nelse-completely ~ preoccupied byworry and anxiety 4, Over the past 3 days, have any of your family or friends been anxious
0 0 No, not at 0 1 Occasionally times-it
seems to
their concentration
preoccupied withworry about me 5. Over the past 3 days, how muchinformation have you and your family
or friends been given?
hard to understa
more
0 4 Noneatall
286 APPENDIX B: TARGETEDRESOURCES AND TOOLS
6. Over the past 3 days, have you been able to share how you are feeling with your family or friends? 0 0 Yes, as much as I wanted to 0 1 Mostof the time 0 2 Sometimes 0 3 Occasionally 4 No, not at all with anyone '7. Over the past 3 days, have you feltthat life was worthwhile? 0 0 Yes, all the time 0 1 Mostof the time 0 2 Sometimes 0 3 Occasionally !II 4 No, not at all 8. Over the past 3 days, have you felt good about yourself as a person? 0 0 Yes, all the time 0 1 Mostof the time 2 Sometimes 0 3 Occasionally 0 4 No, not at all 9. Over the past 3 days? how much timedo you feel has been wasted on appointments relating to your health care, e.g., waiting around for transport or repeating tests? 0 0 None at all 0 2 Up to half a day wasted 0 4 More than half a day wasted 10. Over the past 3 days, have any practical matters resulting from your illness, either financial or personal, been addressed? 0 0 Practical problems have been addressed, and my affairs are as up to date as I would wish 0 2 Practical problems are in the process of behg addressed 0 4 Practical problems exist that were not addressed a0 I have had no practical problems 11. Lf any, what have been your main problemsin thelast 3 days? 1. 2.
12. How did you completethis questionnaire? 0 On my own
0 1 With the helpof a friend or relative 2 With help froma memberof staff
APPENDIX B: MEASURINGQUALITY
287
Copyright 0 1998 Irene Higginson. Reprintedwith permission.
name:
Patient
No:
Date setting: Care
essment
of birth:
Date: Please answer
No :
f o ~ o questi w ~ ~ most accurately
hg. Thank you.
atient been affecte c]1 S l i g h t l y ~ unot t c]2 Moderately-pain limits some activity c]3 Severely-activities or concentration markedly affecte
nable to think of anything else
0 0 No, not at a l-J 1 Slightly l-J 2 Moderately
0 1 Occasiona
or friends been a ~ i o u s
00 No, not at all 0 1 Occasionally l-J 3 Mostof the time 0 4 Yes, patient always see 5. Over the past 3 days, how
2.
12.
atient’s ECOG erformance scale status?
@“fully active; I-restricted;
4-completely disabled)
2-ambulatov; 3-limited self-care;
APPENDIX €3:MEASURINGQUALITY
at~entname:
ate:
s
C o ~ ~0~1998 ~ by h tIrene Hi~~inson. Reprinted with p e ~ i s s i o n .
289
290 APPENDIX B: TARGETEDRESOURCES AND TOOLS
s
SITES
This tool is located withinDr. MarcelloTamburhi’sm ~ t ~ g usite, a l Quality of Life Assessment in Medicine(-www.glamm.com/ql/), which has asearchengine to access more than 803 instruments, including the Therapy. Impact Questionnaire (TI@ that Dr.FrancoToscanimentions in hisinterviewinthispart(see International Perspectives, p. 155). To access the TIQ, go to (-www.qlmed.org/ . Tiq/index. html)
Featured Innovator, Professor Irene Higginson is on the faculty of this department. This site includes a list of publications by. Professor Higginson and other faculty members. I ~ s t ~ ~“Lho te,
.htm) This Italian website has references and multiple links to sites relatingto end-of-life care and palliative care from all over the world (in Italian), Dr. Franco Toscani (see rnternationaz Perspectives, p. 155)serves as scientificdirector of this research institute.
An extensive palliative care site for both professional and nonprofessional audiences, offered by the Division of Palliative Medicine, Department of Oncology, University of Alberta, Edmonton, Canada, and The Edmonton Regional Palliative Care Program. Content includes clinical information, patient assessment tools, cancer material, and l i k s to related resources. For multiple links to clinical assessment tools: (-Fvovw.palliative.org/pc-assess.html)
This site offers a few articles on clinical assessment, as well as extensive coverage of best practices in the health care field.
APPENDIX B: MEASURINGQUALITY
291
(FACC
A.n organization dedicated to creating measures that hold the health system accountable for high-qualitycare, FACCT conducts focus groups and other research to understand the aspects of quality that are important to consumers and then combines these patient expectations with the best available clinical knowledge and scientific research.
Dr. Ira Byock, past president of the American Academy of Hospice and Palliative Medicine, provideswritten resources and referrals for patients and families facing life-limiting illness and their professional caregivers. You may find the Missoulam ) . tool asVitas Quality Of Life Index at ( ~ . d y i n ~ e l l . c o m / ~ Q O L I . h tThis sesses quality of life during the final stages of terminal illness.
Dr. Joan Ten0 has built a toolkit that provides a comprehensive list of tools and references, including measurement instruments related to palliative care. This site contains annotated bibliographies of tools, includinga substantial section on quality of life.
Provides abstractsof two research projects regarding palliative care audit and the determination of quality in palliativecare. A list of their publications can be found at (~.iph.cam.ac.uk/hsrg/levell/publicat.htm~PC~).
2
APPENDIX B: TARGETEDRESOURCES
AND TOOLS
eprinte~~ i t phe ~ i s s i o nof the ~ u t i o ~ u l ~ o sand p i c ~e a l l ~ uCare ~ i v~~ r ~ a ~ i at ion ~ o ~~ aet i o nr aHospice l~ ~ r ~ a n i ~ u t iAlexan~ria? o~)? VA. C o ~ t a c t S t e ~onn h e nor, ~ PhD, at ('703) ~ ~ ~for ~ - e ~ i s9s i to o~nr e0~ ~ n t . ~2000 All ~ ri~hts rese~e~. by m e ~ b e r sof the ice Se~ices)( C h ~ ~or^ ~ S ~
ource Series,2000. Avuilable from
APPENDIX B: PEDIATRICS 293
5. Children and their families should have access to a team of caregivers or, at minimum, a keyworker whose care is seamless, i.e., cares for them where they prefer to be. 6. The unit of care is the child and the family. Family is defined as the persons who provide physical, psychological, spiritual, and social comfort to the child, regardless of genetic relationships. 7 . Care is designedto enhance the quality of life forthe child and family;the child and family must be included in designing the priorities for care after being given as much information as is desired regarding the disease and treatment options. 8. The care team recognizes the individuali~of each child and his or her
family and upholds their values, wishes, and beliefs unless significanth a m is at hand.
9. Pediatric palliative care is optimally delivered by an interdisciplinary team with pediatric knowledge, generally including trained volunteers, social workers, nurses, physicians, and spiritual counselors. 10. The palliative care team is available to the family 24 hours a day, 365 days a year. 11, The provisionof respite, whether for a few hours or a fewdays at a time,
is an essential service in palliative care. 12. Families should be able to refer themselves to a hospice/palliative care program.
13. Providing pediatric palliative care dzficult, is though rewarding work.Direct caregivers must be provided formal or informal psychological support and supervision. 14. Regardless of cause of death, supportive and bereavement care should be provided to all those who are affectedby the child’s death foras long as they need it.
1. Association for Children with Life-Threatening or Terminal Conditions and Their Families, Royal College of Paediatrics and Child Health. A Guide to
the Development of Children’s Palliative Care Services. 1997. 2. World Health Organization. Cancer Pain Relief and Palliative Care in Children. Geneva, Switzerland: IVHO, 1998.
294 APPENDIX B: TARGETEDRESOURCES
I)TO CO
ANDTOOLS
LJTO
of Children with~ ~ e - T ~ e a t e ~ ~ ~ (ACT)
Featured Innovator, Dr. Ann Goldman, is vice chairman of this organization. ACT is an umbrella organization working to improve the care and services for all children in the U.K. with life-threatening conditions and their families. The website has a variety of information, including anewsletter, ACT NOW, as well as a publications page where readers can order items online. The Guide to the Devel~pmentof Children’s Palliative CareServices canbe ordered at (pvww.act.org.uk/actwebnew/publications.htm).
ice and Palliative Care ~ r ~ a ~ ~ a(NHPCO) t i o n Formerly the NHO, this is the largest nonprofit membership organization representinghospiceandpalliativecareprogramsandprofessionalsin the United States.ThisorganizationhassponsoredTheChildren’sInternationalPalliative Carernospice (ChIPPS) Project.
This is the British national academic organization of pediatricians. The College developed The Guide to the Development of Children’s Palliative Care Services with ACT. The website also lists forthcoming meetings and conferences and highlights its book,Medicinesfor Children, soon to be reprinted in 2000.
out.co~healt~dy~~msu~c~dloss. A commercial site that has links to sites that dealwith grief and bereavement over
the loss of a child.
Thisis the Axnericanpolicyandacademicorganizationforpediatricians.The Academy’s policystatements areavailable on-line in fulltext, including the March 1994 Guidelines on ForgoingLife-SustainingMedicalTreatment (RE9406) at (pvww.aap.org/policy/OOll8.html). of Children’s Hospices
APPENDIX B: PEDIATRICS 295
A n associationthatbringstogetherover
30 voluntary sector organizationsin Great Britaindedicated to the care of terminally ill children. Candle~ghtersCanada .can~le~~hters.ca/) Created by The Childhood Cancer Foundation in Toronto, Canada, Candlelighters Canada is a nonprofit, national support and information network with international affiliation dedicated to enhancing the quality of life of children and teens with cancer, their families, and friends. The site offers resources on children and family issues, education, insurance, emotional support, and current information about cancer.
Childre pice (l57"W.C
~nternational e.org/)
This organization is based in Alexandria, Virginia, and was founded to provide a network of support and care for children with l~e-threate~ng conditions and their families. The site is organizedwith information for children as well as for adults. The Kids section allowsthe viewer to enter a cartoon house and find many rooms with various resources. Bibliographies, videos, and books can be found inthe library, children's art in the art gallery, discussion in the conference room. There are many links to sites for children in the Treasure Chest. The site offersa documentation index, which includesGuidelinesforHow to TellChildrenat ( ~ . c ~ i o n l i n e . o r ~ c ~ i - f o r m a l / G U I D E L I N . Hlinks T ~ for . ) ,healthcareprofessionals, and a discussion board.
A British charity site with resources related to children with disabilities, rare dis-
eases, and genetic disorders. This site gives access to family support groups and contains many links to databases of rare diseases. It includes listings for children's hospice and respite care in the U.K.
ospice ~ o ~ n d a t i oofnAmerica (~.ho§p~cefo~ndation.org/) Information about annual teleconferences available from homepage. Year 2000 initiative was Living with Grief: Children, Adolescents andLoss. 2001 teleconference: Caregiving and Loss: Family Needs, Professional Responses. Siteincludes also publications and a detailed reading iist.
The Institute for Family-Centered Care enteredcare.org) This organization serves as a central resource both for family members and health care professionals. Their focus is on pediatric and maternal-child projects,theand
296 APPENDIX B: TARGETEDRESOURCES
ANDTOOLS
site includes many resources for families and professionals. The institute publishes a print newsletter entitled Advances in Family-Centered Care. ic Association(
The IPA is an organization of 147 national pediatric societies and18 international subspecialty. and regional pediatric societies. Its goaltoisimprove the health and welfare of children throughout the world through education and advocacy. The site offers detailson publications and upcoming conferencesas well as on-line issues of International Child Health: A Digest of Current I n f o r ~ a t i o nfrom 1995 to 1998 and one article from 1999.
ThisFrench-languagewebsitefunded by the Frenchgovernmenthasuseful resources and publicationson treating pain in children for health care professionals. These include published pain assessment scales and ordering information for a videoon the use of morphine in children.
The Pediatric Pain Research Lab is located in the WIC Grace Health Center and the Psychology Department of DalhousieUniversityinHalifax,NovaScotia, Canada. This site offers extensive professional, research and self-help resources on pediatricpain.Specifically, the Pediatric Pain Sourcebook of Protocols, Policies and Pamphlets allows viewersto search by category of document, such as Guidelines,to find recent clinical guidelines,which can be downloaded in full. In addition, readers benefit from the submitter’s commentary aswellas peerreview comments about the document. For example, Clinical Practice Guidelines:TheRecognition and Assessment of Acute Pain in Children. Recommendations7 1999, produced by the Royal College of Nursing Institute is available here. Informationabout the Pediatric Pain Letter isavailableat (is.dal.ca/~pedpain/pplet/pplet.html).Two booklets for families: Making Cancer Less Painful: A Handbook for Parents and Pain7 Pain Go Away: Helping Children with Painare available at (is.dal.ca/~pedpain/sel~p.html).
APPENDiX B: SPIRITUALITY
298
APPENDIX B: TARGETEDRESOURCES
ANDTOOLS
LEV~T TOOLS
Daughters of Charity, National Health System 801 North Second Street, Suite 306 St. Louis,MO 63102 Tel: (314) 436-4033 Two videotapes designedby Daughters of Charity for use by groups to initiate discussion of spiritual health care in organizations are available: An v vita ti on to Healing, a baselineconcept of spiritual healthcare, and Called to Care, caregivers reflect on spiritual health care. The goalof these videos is to focus on the meaning of spiritual health as well as to increase viewers’ awareness and intentionality of their role in providing spiritual health care.
The coalition is made up of 13 Catholic health care organizations and the Catholic Health Association. The three priorities of the coalition are research, developing models of comprehensive, community-based, supportive care for dying people, and creating a professional development program. The site has a variety of tools and resources including Hints for Conducting Focus Groups and back issues of S u ~ ~ o r t i vVoice, e the newsletter of the coalition.
The Foundation currently funds more than 150 projects, studies, award programs and publications worldwide. It seeks to encourage a fresh appreciation of the critical importance-for all peoples and cultures-of the moral and spiritual dimensions of life.
0 0
Websites based in countries outside the United States are listed first, followed by websites based in the United States.
s
A.
le contre la ~ o u ~ e u r Ensemble contre la douleur is a Francophone nonprofit organization founded in 1997 in Geneva, Switzerland, by leaders in pain management. The site hosts information primarily in French, including information on its two campaigns: Vers un hiipital sans douleur (Toward a Pain-Free Hospital) and Vivre avec le cancer sans douleur(Living with Cancer without Pain). The site hosts a bibliography with both French and Eng~shentries as well as a resource page providing links to French and English pain-related websites and a list serve for French speakers.
MLI is a group of palliative care personnel and supporters interested in the development of palliative care globally. The site includes past newsletters, links, and names and addresses of palliative care contacts inAustralia. The site is hosted by the Peter Mac~allumCancer Institute site in East Melbourne, Australia.
This site contains the full text of all articles published in the weekly BMJ from January 1996. Access to the entire site is free. This site has topic specific bibliographies, including palliative medicine inthe Collected Resources section.
The Division of Palliative Medicine, Department of Oncology the at University of Alberta in Edmonton, Canada, and The Edmonton Regional Palliative Care Program host this palliative care site for both professional and nonprofessional audiences. The purpose of the siteis to acquaintthe visitor with the basic philosophyof pa~ativecare and its workings in large or small centers. Content includes clinical information, patient assessment tools, cancer material, andlinks to related resources.
ean ~$$ociation for The W C was founded with 40 individual members in 1988. It is now a federation of national and regional societiesof palliative care, representing over 25,000 299
300 APPENDIX C: END-OF-LIFE CARE WEBSITES
individuals across Europe and other parts of the world. The website servesas an ~fo~atio source n about the EAPC and its activities, including descriptions of publications and congresses. The website also offers a directory of ~ a ~ i c i p a t i n g organi~ationsaround the world, including contact names and addresses. Many re~ t ~ o ~ s sources are available in French and English. A n u m ~ e rof ~ ~ ~ o veditorial board members play leadership roles in this organization, including Stein Kaasa, , who is the president.
APPENDIX C: END-OF-LIFE CAREWEBSITES
tember1997andFebruary1998at abcofpc.htm).
(~.hospice-spc-counc~.org.
3
rmat.ion/
A list serve for clinicians and others involved and interested in Based in the U.K., it regularly includes voices from South Africa, New Zealand, Australia, and the continent. The list is to allow for discussion on all aspects of palliative medicine and palliative care. Its aim is to facilitate c o ~ ~ u n i c a t i oben tween practitioners involved in research or educational initiatives and also allow the exchange of i~ormationor advice related to clinical matters.
This is the website for the Spanish Associationof Palliative Care; all content is in Spanish. Extensive information onthe association as well as a clinical guide to palliative care entitledGuias y ManuaZes: Cuidados PaZiativos-~eco~e~daciones de la Sociedad EspaBoZa de Cuidados PaZiativos are available at (.cYcYw.secpal. com/guia.html). Accessto the journal Medicina PaZiatiua is at ( ~ . s e c revista.htm1).
The University of Ottawa Institute of ~ a ~ a t i Care v e is a Canadian a c a d e ~ ccenter in hospice and palliative care. for research and advancedi n t e r d i s c i p ~ education ~ This site contains background information the on Institute, general~ o ~ a t i about on and News Canadian palliative care, and access to two newsletters (~aZZ-Co~nect for health care professionals. The site also includes an active conference area and discussion f o m for the Canadian palliative care professionals.
s
Aging with Dignity isa nonprofit organizationwith the goal of im~rovingcare for those near the end of life. Five Wishes, an easy to use advance directive, is available at this site.
This site provides an overview of the organization and its m tion on events, activities,publicat~ons,and products of ~H~
302 APPENDIX C: END-OF-LIFE CAREWEBSITES
AAPP is a professional society dedicatedto research, education, and professional
standards in doctor-patient communication. Its goal is no less than to change the practice of medicine by helping doctors relate more effectively to each patient. The site includes announcements about upcoming training courses and publications.
As voluntary grass roots organizations, Cancer Pain Initiatives are composed
of nurses,physicians,pharmacists,andrepresentatives ofclinical carefacilities, higher education, and government. These state-based initiatives and their participantsprovideeducation,training,information,andorganizational support to health care providers, cancer patients, andtheir families.
~ r i c Associatio a~ of Critica~-Car~
1
The AACN is the world’s largest specialty nursing organization, with more than 6~,000 members. Information about AACN is available at this website or by calling (800) 899-AACIV.
The AAHSA represents nonprofitorganizationsdedicated to providinghighquality health care, housing, and servicesto the nation’s elderly. The website includes information on the organization, its resources and programs.
ABCD i s a nonprofit public advocacy organization, that publishes ABCD Exchange,
a monthly newsletter online at( ~ . a b c d - c a ~ n g . o r g / ~ c h a n g e . and ~ t min) print.
Care Associatio CA is a federation of 50 state health organizations, together representing nearly 12,000nonprofit and for-profit assisted living, nursing facility, and subacute care providers that care for more than1 million individuals nationallywho are elderly or who have disabilities.
APPENDIX C: END-OF-LIFE CARE WEBSITES 303
ita1 Association
The AHA is the natiowal organization with close to 5000 institutional, 600 associate, and 40,000 personal members that represents and serves all types of hospitals, health care networks, an their patients and commLlnities. Each year, A to recognize and rewardexcelle~~ce in end-ofcare. Application information is available online. irectors Association
Thisis a nationalprofessionalorganizationcommitted to the continuo~lsimprovement of the quality of patient care by providing education, advocacy, information, and professional development for medical directors and other physicians who practice in long-termcare.
nt Assoc~ation
M S A is a student-governed, national organizationwith a members~ipof nearly 30,000 medical st~dents,premedical students, interns, and residents from across
the UnitedStatescommitted training.
to representing the concerns of physicians-in-
The mission of the MS is to serve people in pain by advancing research, education, treatment, and professional practice. A P S is a not-for-profit m~mbershipsociety and welcomes broad participation from all disciplines. Resources include the most recent information on public policy updates, reference tools, and advances in pain ~anagement.
The purpose of ASBH is to promote the exchange of ideas and foster multidisciteach in^, plinary, interdisciplina~,andinterprofessionalscholarship,research, policy development, professional development, and collegiality among people engaged in all of the endeavors related to clinical and academic bioethics and the health-related humanities.
APPENDIX C: END-OF-LIFE CAREWEBSITES
The mission of the ASLME is to provide high-quality scholarship,debate, and critical thought to the community of professionals at the intersection of law, health care, policy, and ethics.
Founded in 19-76, The ADEC is a multidisciplinary organi~ationdedicated to improving the quality of death education, counseling, and caregiving;to promoting research; and to providing support, stimL~lation, and encouragementto its members and those stu ing and working in death-related fields.
The purpose of the Best Practice Network is to promote i~ormationsharing in health care by nurses, physicians, and other health care professionals. The Best Practice Network website is a place where health care professionals can exchange ideas and share their collaborative best practice processesor systems.
The Center designs, implements, and evaluates solutions to health and community problems, accomplishing change in ways that respect the often conflicting values of a pluralistic society. A major current focus is on ensuring the wise and effective useof biomedical technologies and scientific knowledge to improve the o n~s n ~ - oCare ~ ~isz one ~ e quality of life and the health of the public. ~ n n o v ~ ~ iin of several current projects designed to improve terminal and palliative care.
The mission of the University of Minnesota’s Center for Bioethics is to advance and disseminate knowledge concerning ethical issues in health care and the life sciences. The Center conducts original interdisciplinary research, offers educational programs and courses, fosters public discussion and debate through community service activities, and assists inthe formulation of public policy. ative Care
Established by The Robert Wood Johnson Foundationto promote wider accessto excellent palliative care in hospitals and health systems in the United States, the
APPENDIX C: END-OF-LIFE CAREWEBSITES
3
Center aims to provide assistance in the plannin~,development, and implementation of hospital-based and health system-based palliative care programs. The site includes a variety of resources and materials.
The GICD is a ~ i ~ uinter e , iscip~in team ~ ~ of committed individu , public advocacy, and education activitiesto
~ u a limprovement i~ cur~culu ment survey tool, and annotate^ biblio~raphieson m are available. 225 U.S. health nsiveca
'S
resident of the erican Academyof vides written resources and re
This project specializes in physician education and training its riculm on essentialclinicalcompetenciesrequiredtoprovided-o
A comprehensive, nationale ELNEC is a pa~nershipof th
project to improve end-of-l~e care n Association of Colle Center, s u p ~ o ~ by ed
~
~ Cure and ~ other s
resources c
The purposeof EPERC is to assist hysician educators andothers rials. This websitesup qua^^, peer-reviewed trainin
~
n
~
306 APPENDIX C: END-OF-LIFECAREWEBSITES
and dissemination of information on end-of-life training materials, publications, conferences, and other opportunities. EPERCis supported by The Robert Wood Johnson Foundation and is located atthe Medical College of Wisconsin.
A search engine that offers access to a comprehensive collection of reviewed
resources for end-of-life care. The Inter-InstitutionalCollaborating Network on End-of-LifeCare (IICN) links health care organi~ationsthrough a shared network.
The Hastings Center is anindependent, nonpartisan, interdisciplinary research institute that studies ethical and social issues in medicine, the life sciences, andthe n g s Report, a bimonthly jourprofessions. The Center publishesThe ~ ~ s t ~ Center nal featuring articles on a variety of issues in bioethics.
ospice Foundation of America is the nation’s largest charity whose sole mission is to promote the hospice concept of care and that is supported primarily by individual donations. Information about annL~a1teleconferences available from homepage. Year 2000 initiative was Living with Grief: Children, Adolescents andLoss. 2001 teleconference Caregiving and Loss: Family Needs, Professional Responses. Publications and a detailed reading list are also available.
The purpose of this website is to promote the hospice philosophy by providing an interactive gathering place for the on-line hospice community, a comprehensive index of the hospice-related or mat ion available over the Internet, and by adding to that body of information with original articles. The site includes an extensive list of links, articles, and a chat forum.
HPNA is the only hospice and palliative nurses’ professional association. Its purposeis to exchangeinformation, experiences, andideas; to promoteunderstanding of the specialties of hospice and palliative nursing; and to study and promote hospice and palliative nursing research.
APPENDIX C: END-OF-LIFE CARE WEBSITES 307
ional organization dedicatedto the development and worldwide by encouraging coulltries to develop not be expected to copy modis currently chairedby ~duardo at this websiteas well as access its many Care Reports, which are shortsum~aries countries, a monthly newsletter, an extivities, and links to key palliative care
l i n a ~nonprofit , professional association and improvin~the care of patients with ewsletter and is available on the web E). The USP homepage also offers exurces at {www. b~lcyon. corn/i~s~/~~sso~en.html).
A nationalcoalition to i are andcaringnear lated issues out in the campaign is to b
the end of life.Thegoalof the open and to help indietter ways to care for the dying, This site has
anindexfor
vis1
Project is to increase awareness and provide ncerning the treatment of pain. This site is set up to be contains care~llychosenlinksandresources.
C is a commul~ity-based ethics center dedicated to the mission of integrating
consideratioils into health care decision making throughout communities. shops and educational programs for professionals andlay th care providers t h r o ~ ~ g hthe o ~ ~United t States in grapin clinicalwork, and assists ad~inistratorsin integrat~g Partional s t ~ c t u r e . G houses the Comm~lni~-State
3~~ APPENDIX C: END-OF-LIFE CARE WEBSITES
nerships to Improve End-of-Life Care grant programfunded by The Robert Wood Jo~son Foundation.
is a trade association that representsthe interests of more than 6000 home s, hospices, and home care aide organizations. Its members are prirations or other organizational entities, in addition to state home care edical e~uipment s~ppli~rs, and schools,
est nonprofit membership or~anization rams and professionals the in United
de to cancer orm mat ion provided by the U~versityof Penner, Designed for both professionals and patie~ts,the site Ion on specifk types of cancer, medicalialties,globalreu ~ and~~ e r os o ~experiences, a~l a1 trials, conferevention, and detection.
ainLin~is a virtual communityof institutions and practitioners committed to imheir pain management practices developed by staff at the Center forApcs and Professional Practice atEDC in Newton, Massachusetts. This site d by the Mayday Fund. The site has both public and members xtensive annotated listof pain-related websites and resources ublic. Members have access to a variety of resources, includce, E-mail discussions, on-line events, andthe PainLin~Clin-
variety of educational services and information for health care ut pain management and end-of-life care.
APPENDIX C: END-OF-LIFE CAREWEBSiTES
309
The Park Ridge Center is an independent, nonprofit, nonsectarian organization that conducts research, consultation, and educational programs on of health, issues faith, and ethics. They also publish The Bulletin, a newsletter devotedto the connections among health, faith, and ethics.
Pa~ners~ for p Caring: America’s Voices for the w i n g (PirwPv.pa~ners~pforcaring.org) Formerly Choice in Dying, thisaisnational nonprofit organization devoted to raising consumer expectations and demand for excellent end-of-life care. The site offers resources for talking about end-of-life choices, the process of health care agency, and state-specific advance directives.
Project on Death in America (PDIA) (PirwPv.soros.org/death) PDIA’s mission is to understand and transform the culture and experience of dying and bereavement through initiatives in research, scholarship,the humanities, and the arts and to foster innovations in the provision of care, public education, professional education, and public policy. The PDU site provides a comprehensive overviewof the Project on Death in America Faculty Scholars program, grants program, and fbnding initiatives.
romoting Excellence in End-of-Life Care (mnv.promotingexcellence.org/) A national program office of The Robert Wood Johnson Foundation with direc-
tion and technical assistance providedby the Practical Ethics Center at the University of Montana. Promoting Excellence is currently fbnding 22 projects to improve palliative care in dgferent parts of the United States.
S~ppo~iv Care e of the Dying:A Coalition for Compassionate Care (PirwPv.careofd~ing.org/) The three priorities of the coalition are research; developing models of comprehensive, comm~ity-based,supportive care for dying people; and creating a professional development program. The site has a variety of tools and resources and back issues of Supportive Voice, the newsletter of the coalition. : The Hypermedia Assistant for Cancer Pain Management (PirwPv.talaria.org)
This site has a hypermedia presentationof the Clinical PracticeGuideline on the Management of CancerPain, a publication of the Agency for Healthcare Research and Quality (formerly AHCPR). The site also has other resources for technicalinformation on pain, includingthe complete text of Current and Emerging Issues
310 APPENDIX C: END-OF-LIFE CARE WEBSITES
in Cancer Pain: Research and Practice, edited by C.K. Chapman and K. Foley and published by Lippincott-Kaven in 1993. of Instruments to Measure End-of-Life Care (TIME) hcr.~ro~n.edu/pcoc/too~t.htm) Dr. Joan Teno has built a toolkit that provides acomprehensive list of tools and references, including measurement instruments related to palliative care. This site contains annotated bibliographies of tools for specific domains, including quality of life, pain and other symptoms, emotional and cognitive symptoms, functional status, survival time and aggressiveness of care, advance care planning, continuity of care, spirituality, grief and bereavement, patient-centered reports, and rankings (e.g., satisfaction) with the quality of care and caregiver well-being.
Fund Hospital Palliative Care Initiative .or~archive/cl~rant/~pci.ht~) This initiative is designed to improve how New York City’s hospitals care for patients near the end of life and their families. The project has gathered extensive data about hospital deaths and is now developing, implementing, and testing vaa riety of approaches to improve care for dying patients in five hospitals. Site includes the executive summaryof me Challenge of Caringfor Patients Near the End of Life: Findings from the Hospital Palliative CareInitiative.
of
on School of Medicine (WSOM):
Ethics in Medi-
cer.~as~~on.ed~/~ioethics/) Ethics in Medicine is an electronic resource developed as part of the Bioethics Education Project, a collaborative effort withinthe W S O M . The overall aim of this project is to expand and integrate bioethics education throughout the medical school curriculum. The topics, cases, and resources covered are intended to be used as a resource by the W S O M community andto supplement or support other teaching and learning throughout the curriculum.
aders Project for Improved Care at the Endof Life (~.va.~ov/oaa/flp/) The VA Faculty Leaders Project is a two-year initiative ofthe Office of Academic Affiiiations, Department of Veterans Affairs(VA). Its goal isto develop benchmark curricula for end-of-life care and palliative care, as well as strategies for their implementation, for training resident physicians. This projectis supported by The Robert Wood Johnson Foundation.
APPENDIX C: END-OF-LIFECAREWEBSITES
311
ealth Organization Programmeon Cancer Control ~~.Fvho.i~t/ncd/cancer/~de~.ht~) WHO publications, documents, and abstracts relatedto cancer pain, terminal illness, and palliative care.
This Page Intentionally Left Blank
is a 20-year veteran of the Louisiana Depa~mentof Pub ons. Colonel Bordelon is currently chief of security at Cam D, a sectionof Louisiana State Penitentiary in Angola, Louisiana the prison's tactical team for many years and having supervis special needs inmates housed on the mental health tiers, he was in a sition to help the institution balance custody with compass the first security team member for hospice services and h o v e ~ special ~ g security practices relative to h State Penitentiary.
minal cancer.
ish ~ssociationof Palli
is a former teen hospice volunteer at The te the original grant to begin the Lifeti process of life review that ~ o c u ~ e nthe t s lives of ~ o s p i c legacy for their family members. Now attending the Un Coracefounded the Student H eVolunteerOrganiz of 2000. §hevolunteersat the ice of the Piedmont she wrote a similar grant to fund a videoj o u r n a ~ ~proj g cies. ))
3
CONTRIBUTORS A N D CORE TEAM
) is a practitioner of the ancient Vaisnava tradition of Hinduism. He earned his PhD in philosophy, tive and spiritual care in the Vaisnava-Hindu tradition search Institute forVedic Studies, India, and the Unive 5, after practicing Vaisnavism fo d by a spiritual master in India, and lifestyle, Dr. Domworked as a professional actori in South Africa, where he was born and raised in an His perspective on the place of spirituali~in pa ative care is rooted in his own multicultural, m~ltilingLla1 background, his practice of Vaisnava induism, and his familia~tywith the principles and practiceof Ayurvedic medicine in dition to his experience over the past 10 yearswork in^ in London, E the elderly and those dying from AIDS, cancer, and other disease homes, hospitals, and hospices.
began her career as a manager w o r ~ n gin manufacco Karmann has been a m e m ~ e of r the Italian League , a nonprofit organi~ationt vention and the provision of health and social s e ~ i c e sfor cancer Fusco ~ a r m heads a ~ the Volunteer and Care well as managing the Volunteer Training School. Com~itteeof the ~ationalCancer Institute in the European Association for Palliative Care. In as secretary of the steering committeeof the as advisor of ~aradigma,a school for psychologic is a pediat~cianspecializing Orrnond Street Children’s Hospital in London, En~land. , but for the last 10 years,her ~ a r t i c ~ lint ar lliative care for children. She establishe~th in the h ~ m a t o l oand ~ oncology depart Doctor Award for Innovative Team ofth cal care for children andtheir families, researc variety of articles in journals and edited the book Care of ford University Press). She is currently involved in the dev care services for children nationally inthe United of The Association for Childrenwith L~e-Threateningor Terminal Conditions and Their Families (ACT). Dr. Goldman was also inst~mentalin the ~evelopmentof The Child Death Helpline, a national helpline for anyone affected by the death of a child and staffed by bereaved parents. is a senior research scientist in the Center for Applied Ethics and Professional Practice at EDC, where she is currently co-in~estigator and i~ project director of a national research and ~ u a l im hance family-centered pediatric palliative care. She also has been project director of Decisions Near the End of Life, a continuing medical education and institu-
CONTRIBUTORS A N D CORE TEAM
315
tional change initiative designed to promote more humane and rational decision making about the care of the dying in US. hospitals, nursing homes and hospices. A medical anthropologist with extensive research experience in urban comrnL1nity and clinical settings, Dr. Heller has been a researcher in studies concerning end-of-life decision making among cancer and AIDS patients from diverse ethnic backgrounds being treated at a large, urban hospital; the management of chronic illness in frail, elderly people living in the‘community;social interaction among patients and staff in a nursing home; and factors i~Llencingwhether HW-infected adults seek early treatment intervention. Dr. Heller received her Sarah Lawrence College, her MA from the University of Chicago, and her PhD from the UniversityofCaliforniaat§anFranciscoand erkele and was a postdoctoral research scholar at the Stanford University Center for iomedical Ethics in Palo Alto, California. is professor of Palliative Care and Policy, King’s College and St. Christopher’s Hospice, London, England. A physician specializing in palliative medicine and public health medicine (or epidemiology), Dr. Higginson trained at Nottingham University School of She has worked in hospice, palliative home care, and hospitalcare, as well as on policy in health authorities and (for a short while) theindepartment of health for the United Kingdom. Dr. Higginson has published widely on clinical and organizational audit in palliative medicine, quality of life measurement, and evaluation of services and therapies. She developedthe Support Team Assessment Schedule (STAS), which is being used to audit palliative care teams all overthe world, and has recently designed a new audit tool, t Palliative Care Outcome Scale (PQS), that has both a staff and patient version. r. Higginson serves as assistant editor of the journal Palliative ~ e d i c i n eand is on the editorial boards of the J o u r ~ a l of Pa~liativeCare, the Journal of Pal~iative~ e d i c i n eand , Innovatio~sin EndofL@e Care.
s is senior research scholar at TheHastings Center, a prominent ucational institute that studies ethical and social issues in medicine, the life sciences, and the professions. From 1991 through 1999, he served as executive vice president of The ngs Center. During his time there, Mr. Jennings hasdirectedseveralresearcjectson the care of the dying,healthpolicy, chronic illness and long-term care, and ethical issues in human genetics. served as associate director of a project that produced the widely cited and influential Guidelines on the Termination of L~e-SustainingTreatment and the Care of the Dying (1987’). He also teaches at the Yale University School of Medicine in the Department of Epidemiology and Public Health. A political scientist Jennings is a graduate of Yale University (BA 1971) and Princeton 1973). Mr. Jennings has written and edited 13 books and has published more than 100 articles on bioethics and public policy issues.His most recent books are The Perversion of Autonomy: The Proper Uses of Coercion and Constraints in a Liberal Society (The Free Press, 1996), Ethical Issues in Hospice Care Wowarth Press, 1997), and~aithfulLiving, ~aithfulDying: Anglican
CONTRIBUTORS A N D CORE TEAM
e~ectionson ~ ~ ~Care- (Morehouse o ~ Press, ~ 2000). ~ ~He ise currently at work on two new books, one on the relationship between bioethics and public policy analysis and the other on health policy reform in America. is an associateanesthesiolo~istat the Massach~settsGenston, and an instructor in anesthesia at Harvard Medical of Boston University School of Medicine, she trained in , serving as the first female chief resident in anesthesia in lth care policy, she took a year off from anesthesia andmaSchool of Government, where she rePublic ~dmini§trationin 1989. etur~ingto the world zed her talents an improve these sk oral education at the 1 work, she is currently presidentof the edicine Alumni ~ssociation d serves on the board as~achusettsMedical Society corpora-
s a faculty scholarwith the Open Society Institute’s Proj-
tion’s Institute for for c~i1drenwith
~ o 1 u ~ tat e The ~ r Hospice of
e Florida Suncoast in
CONTRIBUTORS AND CORE TEAM
317
is the Volunteer Partnership Programs Coordinator for a Suncoast. She has a background in the fields of education, training, and volunteer management. She has been with The 1996 and has provided leadership inthe design and developmento Teen Volunteer program. This award-winning program has received national reco nition from the National Hospice Foundation, the President’s Service Award, and the Points of Light Foundation. Ms. ahood has consulted with hospices throughout the country that are interested in startingor expanding a youth service program and has presented at the National Hospice and Palliative Care ~rgani~ation and Florida Hospice and Palliative Care, Inc., annual symposiums. is president of the Park dge Center for the Study of Health, Faith and Ethics in Chicago, Illinois, and is a well-known ethicist and an advocate for attending to the spiritual dimensions of providing care near the end of life. is an assistant professor, Department of Medicine director of Clinical Research and Education at the Center to Improve Care of the Dying, George Washington University School of Medicine, Washington, DC. She also serves as a consultant with the National Institute for Healthcare Research (NIHR) as director of education, where she develops programs for undergraduate, graduate, and postgraduate medical education on spirituality, en care, andculturalissuesinmedicine. Shehaschaired a taskforce with the on developingguidelinesforteachinginthesedomains. Dr. Puchalski cochaired a national education conference entitled Spirituality, Cross-Cultural Issues and End-of-Life Care: Curricular Development. As a result of her efforts, spirituality and medicine courses are gaining increased visibility in medical education. Dr. Puchalski theiscoconvenor of the SpifitL~ality Task Force of The Robert Wood Johnson Last Acts Campaign. Dr. Puchalski completed her UCLA, then bachelor’s degree in biochemistry and master’s degree in biology at received her MD at George Washington University School of Medicine. She has also completed a course in Spiritual Formation at the Shalem Institute in Washington, DC. is vice president of Services, Volunte erves as principal investigator of the G RobertWoodJohnsonFoundationPromotingExcellenceinEnd-of-LifeCare demonstration projectto enhance end-of-life care in prison. She also Serves as pfincipal investigator of a Special Project of National Significance project for terminally ill jail inmates, supported by the Health Resources and Services Administration, HN/NDS Bureau. Ms. Ratcliff holds a masters of social work degree from Tulane University. er, is aseniorresearchscientistat the Centerfor Applied Ethics and Professional Practice at Education Development Center, Inc. (EDC).A developmental psychologist and educator with a strong research background in medical education and physician development, Dr. Romer recently served on the
318 ~ONTRI~UTORS AND CORETEAM
executive steerin committee for the National Task Force on End-of-Life Care in Managed Care, a project conductedby EDC with funding from The Robert Wood Johnson Foundation. Dr. Romer also served as a co-investigator on a studyof family perspectives on end-of-life care at Harvard-~~liated a teaching hospital and was a memberof the faculty atthe 1999 seventh annual summer seminar, Taking Ourselves to Death: Narratives and Caregiving at the EndofLife, sponsored by the Center for Literature, Medicine, and the Health Care Professions at Hiram College in Hiram, Ohio, Bilingual in French and English as well as conversant in Polish, she has extensive experience living abroad. Dr. Romer received her J3A degree from the University of Massachusetts at Amherst,her MAT from the School for International Training atthe Experixnent in International Living (now World Learning) in Brattleboro, Vermont,CAS a in Counseling andCons~tingPsychology, and her EdD inHumanDevelopmentandPsychologyfrom the HarvardGraduate School of Education in Cambridge, Massachusetts, assistant professor of Nursing and e, p h s University, clinical and nurse specialist in Ethics at The Johns Hopkins Children’s Center in Baltimore, Maryland. She served as nurse ethicist at the Children’s National Medical Center in Washington, DC, until 1996. She has held a varietyof clinical positions specializing in pediatrics and neonatal care and is involved in several professional organizations. She has served as president and past-president of the Association for the Care of Children’s Health, was a member of the Ethics Integration Work Group for the American Association of Critical-Care Nurses, and sat on the board of directors of the American Society of Law, Medicine and Ethics. Dr. Rushtonworked on the development of standards for bioethics consultation as a member of the Bioethics Consultation Task Force of the Society for Health and Human Values/ Society for Bioethics and served on the ANA Task Force on the nurse’s role in end-of-life decisions and on the Maryland Nurses Association Council on Ethics and Human Rights. From 1996to 1999, Dr. Rushton was a member of The Robert Wood Johnson Foundation Last Acts Campaign Provider Education Task Force. She has published articles in numerous professional journals, been featured in several educational videos on end-of-life care issues, and from 1993 to 1996 was the editor of the Dialogues in Ethics and Law column for Pediatric Nursing. Dr. Rushton earned her doctorate in nursing atthe Catholic University of America with a concentration in bioethics,her master’s of science in nursingwith specialization as a pediatric clinical nurse specialist from the Medical University of South Carer undergradLlate degree in nursing at the University of Kentucky. In shton was awardedthe National Nurseof the Year by the ANA Council on Maternal Child Nursing and March of Dimes and that same year was inducted as a fellow inthe h e r i c a n Academy of Nursing. In1999, she was selected to be a ~ o r ~ eFellow ld in end-of-life ethics and palliative care, with a focus on pediatric palliative care. S was,untilrecently,acolonelandchief of securityin the MainEast Yard at Louisiana State Penitentiary in Angola, Louisiana. In2000, he transferred
CONTRIBUTORSANDCORETEAM
319
to Jetson Correctional Center in Baton Rouge, Louisiana, where he now serves as Warden. Warden Smith has 21 years of correctional experience. He was instrumental in integratingthe hospice philosophy into standard daily operation atAngola. He supervised the inmate organizations that support the hospice program and participated inthe screening and selection of hospice volunteers.
ickson is a research assistant at the Center for Applied Ethics and Professional Practice. She has worked in academic pu~lishingin both an editorial and marketing capacity and most recently was a copywriter for the fashion trade show industry. Ms. Sodickson earnedher BA from the University of Massachusetts, Boston, in psychology, cum laude, after beginning her studies at McGill University in Montreal. She is a performance poet and was a member of the Boston team that competed atthe 1994, National Poetry Slam in Chicago, Illinois. is director of the Center forApplied Ethics and Professional Practice at Education Development Center, Inc. (EDC), where she has more than 20 years experience researching, designing, and evaluating a widevariety of education and quality improvement programs for health professionals, health care organizations, and the public. An expert in adult learning, professional development, and organizational change, Dr. Solomon cofounded the Decisions Near the End of Life program, which has helped over 230 health care institutions across the United States improve practices and organizational policies to better support the needs of dying patients and their families. Currently, she serves as principal investigator for Cancer PainRelief in a Managed Care Setting, a $2 million researcher-initiated grant cofimded by the Agency for Healthcare Research and Quality and the National Cancer Institute and for a national organ donation research study funded by the Health Resources and Services Administration. In addition, she is leading a national pediatric palliative care initiative, funded by the Nathan Cumings Foundation, the Kohlberg Foundation, and the Project on Death in Annerica. As chair of the National Task Force on End-of-Life Care in Managed Care, she wasthe principal author of its widely disseminatedreport, Meeting the Challenge: Twelve ~ e c o ~ ~ e n d a t ifor o n sImproving End-ofLife Care in Managed Care, funded by The Robert Wood Johnson Foundation. Dr. Solomon received her BA degree from Smith College and her doctorate from Harvard University. Emily Tibbetts is a former teen hospice volunteer at The Hospice of the Florida Suncoast in Pinellas County, Florida. Currently,she is attending Georgetown University where she is majoring in Spanish and International Business.
is a registered nurse employed by Louisiana State Penitentiary, an all-male maximum security facility located in Angola, Louisiana. She has been employed by the Louisiana Department of Public Safety and Corrections for seven years. Togetherwith community hospice professionals and prison staff, she worked to create the hospice program that currentlyoperates on the penitentiary
320 CONTRIBUTORS AND CORE TEAM
grounds to provide quality end-of-life careto terminally ill inmates and their families. Currently, she functions asthe hospice case manager. In addition,as inmate volunteer coordinator, she directs the selection and training and provides direct s~pervisionof inmate volunteers.As a representative of the Louisiana State Penitentiary, Ms. Tillman provides assistanceto correctional facilities acrossthe nation in planning and developing prison end-of-life care programs. She is an ongoing Endatof Life(GRACE) participant in the Guided Responsive Action for Corrections Project, the ultimate goal ofwhich is to improve the care of persons dying in prisons. This project is directedby Volunteers of America and funded by The Robert Wood Johnson Foundation. Ms.Tillman serves the GRACE Project as a subject matter expert in the areas of establishing inmate volunteer programs and developing palliative treatment plans of care. Ms. Tillman was a contributor to Prison ~ o ~ ~ ~~ e~r ac t ~eGuidelines, o~al a practical manual developed by the National Prison Hospice Association, and is a member of Louisiana State Penitentiary’s Nursing Education Committee. She is the 2000 winner of the Louisiana Hospice Organization’s professional Heartof Hospice award. is a palliative medicine expert in Cremona, Italy. Trained originally in anesthesiology and intensive care, Dr. Toscani has been a leader in the Italian palliative care movement forthe last 18 years. In 1982,he founded the second palliative care unit in Italy (Sezione di Terapia del Dolore e Cure Palliative, Azienda Ospedaliera Cremonese) atthe General Hospitalof Cremona, where he still serves as director. Dr. Toscani is also one of the founders of the Italian Society for Palliative Care (SICP, 1986) and the European Association for Palliative Care ( W C , 1988). He serves as the scientific director of the Palliative Care Research Institute, “Lino Maestroni,” and recently,the Italian Minister of Health appointed Dr. Toscani to the National Committee for Palliative Care. Dr. Toscani attributes the success ofpalliative care in Italy to the labor-intensive and often disregarded workof an army ofdoctors, nurses, social workers, psychologists, and vol~nteers,of which he is a proud member. In additionto his many professional responsibilities, he is a painter and a scholar of kendo and traditional Japanese metalwork.
, FACP is the medical director, Center for Palliative Studies, San Diego Hospice, a teaching affiliate of the University of California, San Diego School of Medicine. In addition, he serves as vice-chair of the American Board of Hospice and Palliative Medicine and a member of the board of directors of the American Academy of Hospice and Palliative Medicine. He curthe Ethics Standards Division of the American Medrently servesas a consultant to ical Association and the National Board of Medical Examiners in the area of endof-life care. He has been particularly interested in the integration of hospice and palliative care into academic medicine. He has published widely on the subject of hospice, palliative medicine, and pain and symptom management. Dr. von Gunten received the bachelor of arts degree with honors from Brown University in Providence, Rhode Island, in 1978. He then earned a PhD in Biochemistry and MD with honors from the University of Colorado Health Sciences Center in Den-
CONTRIBUTORS AND CORETEAM
321
ver, Colorado, in 1988. He subsequently pursued internship and residency training in internal medicine, followed by specialty training in hematology/oncology at the McGaw Medical Center of Northwestern University. He joined the faculty and was an assistant professor of medicine at Northwestern University Medical School until 1999,where he directed programs in hospice and palliativecare, education, and research. He currently holds the academic rank of associate professor of Medicine, Northwestern University Medical School.
E. Weissman, MI) is professor of internal medicine and director of the Medical College of Wisconsin Palliative Care Program. As director of the National Internal Medicine End-of-Life Residency Education Project, he is currently working to introduce end-of-life curricula into 210 U.S. internal medicine residency programs. Dr. Weissrnan. codirects End-of-Life Physician Education Resource Center (EPERC), a web-based resource for peer-reviewed physician education information, and he is editor-in-chiefof the Journal of Palliative Medicine. James West is a 44-year-old inmate at Louisiana State Penitentiary, He has been an inmate hospice volunteer since 1998. He also participates in his prison community as a CPR instructor and an advocate and interpreter for the deaf in prison. As his assigned prison job, he serves as an inmate counsel for members of the prison population and assists themwith legal matters.
This Page Intentionally Left Blank
A
ABCD Exchange (newsletter), 302 About.com, 294 Academy of Hospice Physicians, 192 Active treatment, 267 Adolescents Life Review Form, 272 myths and support, 50 see also Teen volunteers Advance care planning, 267 Aduances in Family-Centered Care, (newsletter), 296 Actvention Health System, 86 Advocate Health Care, 202 Mrica, pediatric care, 186 Agency for Health Care Research and Quality, 309 Aging intergenerational videos, 279 meaning and relationship, 47 Aging with Dignity, 301 Aguzzoli, L., 89 Alcoholics Anonymous,prison hospice, 19 American Academy of Hospice and Palliative Medicine, 281, 301 American Academy of Pediatrics, 294 American Academy of Physician and Patient, 302 American Alliance of Cancer Pain Initiatives, 305 American Association of Critical Care Nurses, 302 American Association of Homes and Services for the Aging, 237, 302 American Correctional Association, 259 American Health Care Association, 302 American Hospital Association, 4, 237, 303 American Medical Association, 4, 237 American Medical Directors Association, 303 American Medical Student Association, 303 American Pain Society, 303 American Psychiatric Association, 2 16 American Society of Bioethics and Humanities, 303 American Society of Law, Medicine anct Ethics, 303 Americans for Better Careof the Dying, 302 Anesta Corporation, 184 Anesthesiology, spiritual dimension, 2 19-222 Angola Prison I998 (Cheng), 11
Approaching Death (Institute of Medicine), 137 Arthur Vining Davis Foundation, 184 Association for Death Education and Counseling, 304 Association for the Care of Children with LifeThreatening Diseases and Their Families (ACT), 173, 18111,294 Association for the Care of Children’s Health, 168 Association of American Medical Colleges, 214 Association of Children’s Hospices, 294 Atheists, spiritual needs, 227 Australasian Palliative Link International, 299 Australia, hospice care, 179, 189 Autoimmine deficiency syndrome (AIDS) Canadian Legal Network, 269 palliative care, 121 pediatric care, 173, 186 prison hospice, 13, 31 school programs, 61 A p e d i c medicine, spiritual healing, 223-230
Batten’s disease, pediatric care, 173 Bear Cottage (Australia), 189 Behner, H., 235 Bereavement programs camps, 185, 240 counselors, 63 prison hospice, 29 Best Practices Network, 290, 304 Beth Israel Medical Center (New York City), 242 Bhagavad Gita, 226 Bluebond-Langner,M., 186 Bordelon, D., 39, 313 Boudreaux, J., 32 Brain damage, pediatric care, 173 Brenner, P., 187 Bridge programs, hospice care, 189 Brief Depression Inventory,2 15 British Medical Journal, 145, 299 Brown, L., 47 Bruera, E., 107, 281, 313 Buckley, S., 184 Busy Boy Pauses for Grandma’s Kiss OIOyt), 43 323
Butterfly Program, 189, 246 Byock, I., 46, 291, 305
c Cain, B., 20, 238 Calvary Hospital (Bronx), 243 Canada palliative care, 126 pediatric care, 179 Canadian HIV/AIDS Legal Network, 269
Canadian Palliative Care Curriculum, The (MacDonald), 3 16 Canary Islands, palliative care, 112 Cancer Pain Relief and Palliative Care in Children, 188 Cancer patients case report, 35 home care, 114 palliative care, 138 prison hospice, 25 support services, 97 Cancer Relief Macmillan Fund, 300 Candlelighters Canada, 185, 295 Canuck Place (Vancouver), 188 Care of the .Dying Child (Goldman), 314 Caregivers, defining, 267 Cassell, E., 119 Ca~ledto Care (videotape), 298 Catalonian ~ a ~ a t i Care v e Planning and Implementation Pilot Program, 112, 115 Catholic Health Association, 298 Centeno, C,, 111, 313 Center for Applied Ethics and Professional Practice, 168, 304, 308 Center on Crime, Communities and Culture, 270 Center to Advance Palliative Care, 4, 281,304 Center to Improve Care of the Dying, 297, 305 Cerebral palsy, pediatric care, 173 Cetti, J., 245 Challenge of Caring for Patien~s Near the End of Life, The, 310 Chapman, C. R., 310 Chemotherapy, prison hospice, 22 Chicago School of Nursing, 49 Child and Family Support Program, 54, 63 Children palliative care, 167, 171, 183 Children’s Hospice International,295 Children’s Hospital (Philadelphia),189 Children’s International Projecton Palliative/ Hospice Services (ChIPPS), 183-193
administrative policy, 186 bereavement program, 187 ethical issues, 186 funding, 184, 188 goals and activities, 183 recruiting staff, 184 research priorities, 186 spiritual care, 187 universal principles, 292 Web sites, 294 Cimino, J., 243 Circle of Life Award, 4, 53, 237-247 City of Hope Cancer Center(Los hgeles), 305 Cleveland Clinic, 123, 244 Clinical Pastoral Education, 220
Clinical Practice Guidelines on the Management of Cancer Pain, 309 Clinicians, spirituality,205 Clinton, WJ., 192 Collins, J., 189 Comunity health care, 209 pediatric nurses, 172 service, 60 Community Memorial Foundation,86 Connor, S., 184, 292 Consumer organizations,117 Contact a Family, 295 Continuous quality improvement(CQI), 139, 144 Corace, B., 48, 81, 313 Corporation for National Service, 278 adrnhistration, 265 palliative care, 260 patients rights, 264 program and activity, 264 quality improvement, 266 safety and security, 263 standards and practices, 259 terminology and language, 259 see also Prison hospice
Current and Emerging Issues in Cancer Pain: Research and Practice (Chapman and Foley), 309
Dalhousie University (Halifax), 296 Dangle, T., 189 Daughters of Charity, 203, 298 Davies, B., 184
INDEX 325
Decisions Near the End of Life, 139n, 305, 314 Delphi technique, consensus building, 185n Dementia, teen volunteers, 78 Depression, spirituality, 210 Developmental psychology,hospice care, 45 Diana nurses, pediatric care, 172 Directory of Palliative Care Programs, 113, 313 Do not resuscitate orders (DNR), 16, 22, 267 Dom, H. T., 223, 314 Donabedian, A., 145 Donne, J., 7 Dream of Recovery (Rubin), 1 Dying Well, 291, 305 E Edmonton Palliative Care Program, 280, 299 Education Development Center, 168, 188 Education for Physicianson End-of-Life Care, 4, 305 End-of-life care Ayurvedic medicine, 223-230 case reports, 81 correctional setting, 259-267 defining, 267 healing community, 7-9 institutional accountability, 137- 141 interdisciplinary team, 260 intergenerational models,27 1-279 pediatric patients, 167-170 physician training, 205, 212 quality improvement, 266 spirituality, 201, 223, 297 teen volunteers, 81 tools and resources, 249 United States, 137 Vaisnava Hinduism, 223-230 volunteerism, 7-9 Web sites, 269, 299 see also Hospice care; Palliative care End-of-Life Nursing Education Consortium, 305 End-of-Life Physician Education Resource Center, 305 Erikson, E., 46 Ethical Issues in Hospice Care uennings), 315 Ethics in Medicine, 310 Ethnography, hospice programs, 51 European Associationfor Palliative Care, 280, 299
European Journalof Palliative Care, 280, 300 European Organization for Research and Treatment of Cancer, 150 Euthanasia, palliative care, 117 Evans, C., 20, 39 F
Faculty Leaders Project for ImprovedCare at the End of Life, 310 Fairview Health Services (Minneapolis), 249 Faith healing, 207 Faithful Living, FaithfulQ i n g uennings), 3 15 Family defining, 267 prison hospice, 14 Faulkner, K., 184 Five Vishes, 301 Florida Suncoast Hospice, 53-71 Circle of Life Award, 239 pediatric programs, 189 teen volunteers, 45-52 Web site, 278 Foley, K., 310 Food and Drug Administration (FDA), 192 Foundation for Accountability, 138, 291 Frager, G., 179 Franciscan Health System West, 5, 241 Functional Assessment of Cancer Therapy (FACT), 150 FUSCOKarmann, C., 48, 89-101, 314 G
Gauguin, P., 45 Generation Connection Society, 278 Generations Together, 278 Generations United, 279 Genetic disorders, pediatric care, 173 George Washington University, 121 Gilligan, C., 47 Goldman, A., 169, 184, 294, 314 Gomez Batiste, X., 111 Gomez Sancho, M., 111 Great Ormond Street Hospital for Children (London), 171 Grief counseling, 63 Grogan, D., 165 Growth House, 306 Guide to the Development of ChildrenS Palliative Care Services, 181, 294 Guidelines on Forgoing Life-SustainingMe& ical Treatment, 294
Guidelines on the Termination of Life-Sustaining Treatment and the Care of the w i n g , 3 15 Guiding Responsive Actionfor Corrections in End-of-Life Care (GRACE), 5, 13,260
Haight, B., 271 Hammer, IC., 49 Harvard MindLBody Medical Institute, 298 Hastings Center, 306 Healing community, 7-9 prayers, 220 Health care, spirituality, 201, 206 Health Care Financing Administration, Health care institutions, accountability, 137-141 Health Forum Summit (Orlando), 237 Health on the Net Foundation, 300 Health Plan Employee Data and Information Set (HEDIS), 141 Helen House (Odord), 172 Heller, IC. S., 3, 111, 171, 314 Helpful Essential Links to Palliative Care (HELP), 281, 300 Higginson, I. J., 137, 158, 178, 283, 315 High schools, special programs, 60, 78 Hinduism, end-of-lifecare, 223-230 Holistic care correctional setting, 260 defming, 268 Home hospices cancer patients, 114 palliative care, 119 volunteers, 95-97 Hong Kong, pediatric care, 179 Horvitz Center for Palliative Medicine, 244 Hospice care admission criteria, 2 1 barriers, 29-3 1 defming, 120 developmental psychology,45 implementing, 20-23 intergenerational programs, 45, 64, 89, 271 Italy, 97, 156 listening skills, 274 meaning and relationship, 47 measuring success, 32 mutual benefits, 45-52 neonatal and perinatal, 189 pediatric programs, 169, 183 reimbursement, 121
teen volunteers, 45-52 Web sites, 278 see also Prison hospice Hospice Foundation of America, 295, 306 Hospice Standards of Practice, 259 Hospice Teen Council,61 Hoyt, M., 43, 135 Human i~munodeficiencyvirus Canadian Legal Network, 269 pediatric care, 173 school programs, 61 I
India, hospice care, 223, 227 Informed consent, 268 Inmate volunteers confidentiality, 257 education, 258 medical screening, 256 organizations, 19 participation criteria, 252 prejudice against, 30 reimbursement, 258 responsibility for, 254 selection, 254 training, 257 see also Prison hospice Institute for Family-Centered Care, 295 Institute of Medicine, 137 Institutions. See Health care institutions Interchange (newsletter), 279 Interdisciplinary team, 17, 268 Intergenerational programs accountability, 51 barriers and challenges, 65 case reports, 73, 77 designing, 54-57 ensuring success, 49-5 1 evaluating, 51 feedback, 5 1 hospice care, 45, 64, 89, 271 Italy, 89- 100 meaning and relationship, 47 outcome measurement, 68 structure and function, 49 tools and resources, 271-279 Web sites, 278 see also Teen volunteers Inter-Institutional Collaborating Networkon End-of-Life Care, 306 International Associationfor Hospice and Palliative Care, 281, 307
INDEX 327
International Associationfor the Study of Pain, 307 International Child Health, 296 International Pediatric Association, 296 International Societyfor the Study of Pediatric Pain, 188 Interviews, psychosocial vs. spiritual, 207 Into the Light (Behner), 235 Invitation to Healing (videotape), 298 Italian League Against Cancer, 48, 89, 278 Italy palliative care, 155-162 volunteerism, 89- 100
Jacob Perlow Hospice, 243 Jennings, B., 315 John Templeton Foundation, 298 Johns Hopkins Children’sCenter, 167 Joint Commission for the Accreditation of Health Care organizations, 141 Journal of Palliative Care, 315 Journal of Palliative Medicine, 315 Juvenile Welfare Board,54 K
Kaasa, S., 280, 300 Karma, 228 Kenneth B. Schwartz Center, 297 King’s College School of Medicine (London), 290 Kraft, M., 219, 316 L
Labyak, M., 239 Last Acts, 307 Lattanzi-Licht, M., 185 Learn and Serve Grants, 61, 68, 271 Learning, social nature, 50 Leenay, M., 247 LeGrand, S. B., 244 Lernoine, C., 20 Letizia, M., 48, 85 Levetown, M., 168, 183, 246, 316 Liben, S., 179, 184 Life Review Form, 271 Life reviews, teen volunteers, 58, 75 Life-threatening illnesses, pediatric care, 171-180 Lifetime Legacies, 240 Listening, skills and taboos, 274 Living With Cancer Without Pain, 299
Lo, J., 48, 73, 316 Los Montalvos Hospital (Salamanca), 111 Lost Self (Rubin), 105 Louisiana Hospice Organization, 32 Louisiana State Penitentiary Circle of Life Award, 238 hospice program, 17-33 security officer, 37, 39 see also Prison hospice Loyola University, 48, 85 Lymphoma, pediatric care, 174 M
MacArthur Foundation, 279 MacDonald, N., xiii, 316 Magnet schools, medical training, 61 Mahood, S., 49, 85, 273, 373 Making Cancer Less Painful: A Handbook for Parents, 296 Massachusetts General Hospital (Boston),2 19, 297 Maull, F. W., 269 Mayday Pain Project, 307 McFatter, R. D., 20, 238 McGill Quality of Life Questionnaire, 149 Medical Center for Federal Prisoners, 13 Medical College of Wisconsin, 282, 308 Medical schools pediatric care, 180 spirituality, 202 Medicare, hospice benefit, 9, 120 Medicines for Children, 294 Meeting the Challenge: Twelve Recommendations for Improving End-ofLijie Care in Managed Care (Solomon), 319 Melanoma, end-of-lifecare, 2 19 Memorial Sloan-Kettering Cancer Center, 243 Mental health representative, 268 Midwest Bioethics Center, 307 Miller, G., 184 Minnesota Multiphasic Personality Inventory, 91 Missoula-Vitas Quality of Life Index, 291 Moody, H., 46 Mother and Daughter (Hoyt), 135 Mucopolysaccharide disorders, 173 Muscular dystrophy, pediatric care, 173 N
Narcotic drugs palliative care, 27
328
INDEX
prescribing rules, 113 prison hospice, 27 Nathan Cummings Foundation, 16811, 188 National Aeronautics and Space Administration (NASA), 3 National Association for Home Care, 308 National Committee for Quality Assurance, 141 National Council for Hospice and Specialist Palliative Care Service, 282, 300 National Hospice and Palliative Care Organization Circle of Life Award, 237, 282 international perspective, 184 tools and resources, 292 Web sites, 294, 308 National Institute for Health Care Research, 205, 214, 297 National Institute of Cancer (Milan), 89 National Institutes of Health (NIH), 2 11 National Lotteries Research Board, 152 National Prison Hospice Association, 3311, 269 National Research Institute on Mother and Child (Poland), 189 Negative spirituality, 13 2 Neonatal hospice care, 189 Neurodegenerative diseases, 173 New England Journalof Medicine, 168, 192 Northwestern Memorial Hospital (Chicago), 120 Nunez Olarte,J., 111 Nurses spirituality, 213 training, 130, 213 volunteers, 98 0
O’Connell, L. J., 201, 297, 317 OncoLink, 308 Oncology, pediatric, 169, 174 Open Society Institute, 270 Opiods, prescribing rules, 113 Oprah Vinfrey Show, 85 Order of Hospital Brothers of Saint John of God, 113 Orloff, S., 189 Ortiz, S., 111 Oxford Testbook of Palliative Medicine, 316 P
Pain: Clinical Updates (newsletter), 307 Pain Link Project, 139, 308
Pain management prison hospice, 14, 27 see also Palliative care Pain, Pain Go Away: Helping Children with Pain, 296 Palliative care accessibility, 158 acute inpatients, 121 Ayrvedic principles, 224 billing codes, 122 clinical audit, 144 consultation, 122 consumer demand, 137- 141 correctional setting, 260 data collection, 140 defining, 119, 268 education process, 122 euthanasia, 117 family view, 128 fellowship program, 244 government fimding, 156 home hospice, 119- 130 implementing, 26 institutional accountability, 137 integrated model, 107, 280 interdisciplinary team, 157 Italy, 15 -5162 national policy, 125 ongoing challenges, 107-109 organizational leadership, 137 outcome measurement, 137-141 pain medicine, 242 pilot program, 112, 115 plan and services, 261 program design, 119- 130 quality measurement, 283-291 referrals, 158 regional programs, 112 reimbursement, 121 review boards, 125 self-reporting, 162 settings and barriers, 124 Spain, 111-117 spiritual aspect, 161 staffing unit, 127 territorial issues, 161 tools and resources, 283-291 training, 156 treatment costs, 126 United Kingdom, 107 Web sites, 280, 290 worldwide growth, 107- 109 see also Pediatric care; Prison hospice
INDEX 329
Palliative Care Institute, 243 Palliative Care Outcome Scale(PO§) background, 283 future work, 283 institutional acciountability, 137 patient questionnaire, 285 quality measurement, 283-289 registration form, 284 scoring sheet, 289 staff questionnaire, 287 Palliative Care Research Institute, 290 Palliati~e ~edicine: A Case-Based Manual (MacDonald), 316 Palliative Medicine Mailbase, 301 Papadatou, D. , 186 Park Ridge Center for the Study of Health, Faith and Ethics, 201, 297, 309 Partnership for Caring: America’s Voicesfor the Dying, 309 Pastoral education, 220 Patients life reviews, 58 social acceptability,151 spiritual needs, 225 Peabody, F,, 50 Peaceful Death: ~ e & o m ~ e n dCompetened cies and C u ~ i c ~ l Guidelines ar for ~ n d - o ~ Nursing L ~ e Care, 305 Pediadol, 296 Pediatric care, 167-170 barriers and challenges, 167, 190 bereavement services, 191 cancer patients, 180, 192 curative approach, 171- 180 disagreement over, 1’77 famjly-centered, 168, 188 funding, 169, 174 holistic services, 169 home-based, 172, 178 hospice programs, 171 improving, 179 inpatient services, 172 integrating, 171- 180 international models, 185, 188 life-threatening illness,171- 180 m e ~ i n ~interventions, ul 16811 measuring success, 178 oncology programs, 169 pain management, 296 psychosocial aspects, 175, 192 quality indicators, 180 regulatory issues, 190 reimbursement, 190
sustaining, 180 tools and resources, 292 Web sites, 294 worldwide, 167 Pediatric Nursing,318 Pediatric Oncology (Grogan), 165 Pediatric Pain Letter, 296 Pediatric PainSourcebook of Protocols, Policies and Pam~hlets,296 Perinatal hospice care, 189 Perversion of Autonomy, m e ~ennings),315 Peter MacCallum Cancer Institute, 299 Physicians spirituality, 205,2 11 training, 130, 205 volunteers, 98 Poland, pediatric care, 189 Porta, J., 111 Portenoy, R. K., 242 Princess Diana, 172 Prison hospice acceptance, 251 admission criteria, 21 advance directives, 16 barriers, 29-31 bereavement services, 29 budget concerns, 31 building trust, 251 case report, 35 challenges, 14 Circle of Life Award, 17 implementing, 20, 29 inmate volunteers, 252-258 integrated goals, 18 interdisclipinary team, 17 love and understanding, 250 measuring success, 32 patient safety, 23 referral and admission,20 safety and belonging, 249 security and classification, 25, 39 social needs, 27 spiritual support, 27 starting, 33 tools and resources, 249-260 training, 14 volunteers, 14, 23 Prison Hospice Operational Guidelines, 320 Program for All-Inclusive Carefor Children and Their Fadies, 169 Program on Cancer Control, 311 Project Lazarus, 31 Project on Death in America, 4, 309
330
INDEX
Promoting Excellence in End-of-Life Care, 4, 309 Prosha1 development zone, 50 Psychiatrists, spirituality, 16 2 Psychological tests, 9 1 Psychologists, spirituality, 2 16 Psychology, hospice care, 45 Psychosocial aspects interviews, 207 pediatric care, 175 support,268 Puchalski, C. M., 202, 297, 317
Quality and Health Care,153 Quality measurement palliative care, 137, 155, 283 staff vs. patient, 146, 151 tools and resources, 283-291 Web sites, 290
Radiation therapy, prison hospice, 22 Rare diseases, 295 ]Ratcliff, M., 13, 317 Ravdsi, G., 89 Religion, spirituality, 223 Remen, R. N., 214 Robert WoodJohnson Foundation, The Circle of Life Award, 237 end-of-lifecare, 4 international perspective, 184 prison hospice, 14 Romer, A.L., 3, 53, 85, 119, 144, 155, 183, 205, 223, 317 Rosel, N., 47 Roxane Laboratories, 184 Royal College of Nursing, 296 Royal College of Pediatrics, 173, 180, 294 Royal Marsden Hospital (London), 123 Rubin, E., 1, 105, 199 Rushton, C. H., 167, 318
s St. Christopher’sHospice (London) international perspective, 223 palliative care, 123 pediatric care, 178 qwality measLlrement, 137
St. John’s Hospital (Pamplona), 114
St. Thomas Hospice, teen volunteers, 49, 85, 276 St. Thomas Hospital (London), 123 San Diego Hospice Circle of Life Award, 245 palliative care, 119, 130 pediatric care, 189 Web site, 280 Sastre, P., 113 Saunders, C., 119 Schools, magnet, 61 Security officer, prison hospice, 37 Service learning, highschools, 60 Shaw, C., 145 Smith, S., 37, 318 Sociedad Espafiola de Cuidados Paliativos (SECPAL) integrated model, 113 Web site, 280, 301 Sodickson, S. I,., 319 Solomon, M. Z., 3, 319 Soros Foundation, 4, 270 Spain, palliativecare, 1 1- 1117 Spanish Association Against Cancer, 113 Spirit Care, 203, 298 Spirituality anesthesiology, 219-222 assessment tool, 207 Ayurvedic medicine, 223-230 biomedical ethics, 203 cross-cultural, 2 16 defining, 223 end-of-lifecare, 201, 223 feedback, 2 15 future view, 217 health care, 201-203 history-taking, 205-217 importance, 209 international, 2 16 negative, 2 13 practical programs, 202 religion, 202, 223 tools and resources, 297 Vaisnava. Hinduism, 223-230 workshops, 2 13 Spirituality Index, 2 15 Stakeholders, advisorycommittee, 54-57 Stevens, M., 189 Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), 167 Suhasy, D., 213
INDEX 331
Sumner, L., 187 Support Team Assessment Schedule(STAS) adapting, 159 palliative care, 155-162 quality measurement, 143 training, 147 Web site, 290 weekly audits, 160 Supportive Care of the Dying, 298, 309 Supportive Voice (newsletter), 298, 309 T Taking Leave (Rubin), 199 Talaria: The Hypermedia Assistant for Cancer Pain Management, 309 Tamburini, M., 89, 162, 290 Tay-Sachs disease, pediatric care, 173 Team coordinator, 268 Teen Council, 74 Teen volunteers advisory committee, 54-57 barriers and challenges, 65-68 case reports, 73, 77 eligibility criteria, 56, 86 family support, 87 Florida Suncoast Hospice, 45-52 future view, 88 hospice care, 45, 85 Italy, 99 life reviews, 58, 277 listening skills, 47 mutual benefits, 45-52 outcome measurement, 68 patient support, 87 pilot program, 55 possible services, 276 program design, 54-57 recruiting, 54, 66, 74, 86 retention, 69 roles available, 57 screening, 56 selecting, 99 siblings, 70 support and supervision, 59, 63 testimonials, 70 training, 57, 67, 86, 99 see also Intergenerational programs Temple University, 279 Teno, J., 297, 310 Terminal care, maturing field, 4 Terminally ill defining, 268
prison hospice, 249-251 psychological needs, 249 Therapy Impact Questionnaire (TIQ, 162, 290 Tibbetts, E., 77, 319 Tibbetts, M., 69 Tillnun, T., 17, 238, 249, 319 Tinnon, W., 85 Toolkit of Instruments to Measure End-of-Life Care (TIME), 291, 297, 310 Toscani, F., 138, 155, 290, 320 Toward a Pain-Free Hospital, 299 Trandum, G., 241 U
United Hospital Fund, 310 United Kingdom hospice care, 188 palliative care, 107, 123, 137 pediatric care, 171- 180 United States hospice movement, 107 palliative care, 137 pediatric care, 167, 189 University HospitalC o ~ u n i t yHospice (New Orleans), 31 University of Cambridge Health Services Research Group, 291 University of Dundee Center for Medical Education, 300 University of Minnesota Center for Bioethics, 304 University of Ottawa Institute of Palliative Care, 282, 301 University of Pennsylvania CancerCenter, 308 University of Pittsburgh Center for Social and Urban Research, 278 University of Texas Medical Branch (Galveston), 183 University of Virginia, 82 University of Washington Schoolof Medicine, 310
Vaisnava Hinduism, 223-230 Ventafridda, V., 112, 157 Veterans Administration, 310 Videos, intergenerational, 279 Volunteerism healing community, 7-9
332
INDEX
Italy, 89- 100 prison hospice, 23-26 Volunteers age and sex, 92 case report, 35 correctional setting, 267 eligibility criteria, 91 financing costs, 97 home care, 95-97 hospice care, 45-52 hospital, 94 longevity, 98 ~ e a s u ~ value, n g 98 prison hospice, 252-258 recruiting, 90 responsibilities, 93 selecting, 90 settings and tasks, 94 training, 24, 90 see also Teen volunteers Volunteers of America, 33n, 259, 269 Von Gunten, C . , 119, 320 Vygotsky, L., 50
w Walsh, D., 123 Warsaw Hospice for Children, 189 Web sites, end-of-lifecare, 299-31 1 Weissman, D. E., 3, 321 West, J., 35, 321 Winfrey, O., 85 Worden, J. W., 187 World Health Organization (WHO) home hospice, 120 palliative care, 112 pediatric care, 188 Web site, 311 World Palliative Care Reports, 281 Y
Yoga, disease, 228
Zerby, B., 49, 85
