Psychiatric Home Care Clinical and Economic Dimensions
This Page Intentionally Left Blank
Psychiatric Home Care Cli...
26 downloads
942 Views
8MB Size
Report
This content was uploaded by our users and we assume good faith they have the permission to share this book. If you own the copyright to this book and it is wrongfully on our website, we offer a simple DMCA procedure to remove your content from our site. Start by pressing the button below!
Report copyright / DMCA form
Psychiatric Home Care Clinical and Economic Dimensions
This Page Intentionally Left Blank
Psychiatric Home Care Clinical and Economic Dimensions
Alan Menikoff
( ACADEMIC PRESS San Diego NewYork Boston London Sydney Tokyo Toronto
This book is printed on acid-free paper. ~)
Copyright 9 1999 by ACADEMIC PRESS
All Rights Reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopy, recording, or any information storage and retrieval system, without permission in writing from the publisher.
Academic Press A Division of Harcourt Brace & Company 525 B Street, Suite 1900, San Diego, California 92101-4495, USA http://www.apnet.com
Academic Press Limited 24-28 Oval Road, London NW1 7DX http:/www.hbuk.co.uk/ap/
Library of Congress Catalog Card Number: 99-62666 International Standard Book Number 0-12-490940-X PRINTED IN THE UNITED STATES OF AMERICA 99
00
01
02
03
04
MM
9
8
7
6
5
7
About the Authors
Gerald A r n d t , Ed.D., is Director of the Institute, the professional training program at the New Learning Center, located in Westport, Connecticut. Dr.Arndt is a licensed marriage and family therapist who specializes in working with couples and families. He is past president of the Connecticut Association for Marriage and Family Therapy, an Approved Supervisor for the American Association for marriage and Family Therapy, and has extensive experience in the training and supervising of professionals in family therapy. Elizabeth G. Brenner, M.S.W., an active worker in community-based mental health in the Boston area for many years, is the program director at the Choate facility described in her chapter, co-written with Stuart Korean, Ph.D. Choate was unique in its ability to work in both public psychiatry and in the commercial sector, using the same facilities and clinical staffthat are housed atArbour/Choate Counseling Services inWoburn, MA.Their chapter oudines a picture of the future of integrated behavioral health care providers who are asked to straddle these two managed care sectors. Ms. Brenner co-authored Home-Based Care, referred to in Chapter 9, which focuses on describing the clinical model of the Choate home-based program. Winifred Christ, D.S.W., is a faculty member of Weill Medical College of Cornell University and NewYork Presbyterian Hospital (White Plains and NewYork, New York). As Director of Social Work for psychiatry, her department is responsible for thousands of aftercare arrangements each year. From that perspective, Dr. Christ has learned to value the benefits of a well-designed aftercare program, including the efficacy of customized home care, as large-scale facilities move the locus of care to the community. Carla D a i c h m a n , M.S.W., is Assistant Clinical Professor in the Department of Psychiatry at Columbia University and a faculty member in the Urban Affairs
vi
About the Authors
department at Hunter College. She has been training social workers, psychiatrists, and psychologists in group therapy for many years.A strong advocate of patient autonomy, Ms. Daichman established the first independent living program for community patients at the New York State Psychiatric Institute. Since 1988, she and Glynn Rudich have collaborated in their work with families and parent groups. They have presented their work to a number of professional audiences in the area of group work and long-term psychiatric conditions. Joel Kanter, M.S.W., L.C.S.W., is a senior case manager with Fairfax County (VA) Mental Health Services, and provides psychiatric home care in his private practice in Silver Spring, Maryland. He has lectured and consulted on the community treatment of the severely mentally ill across the United States, Canada, and Europe. He has authored over two dozen articles on community treatment and has edited two volumes on this topicmClinical Issues in Treating the Chronic ?dentally I11 (JosseyBass, 1985) and Clinical Studies in Case Management (Jossey-Bass, 1995). Linda Keller, M.S.W., A.C.S.W., is graduate of the Columbia University School of Social Work and an Approved Supervisor for the American Association for Marriage and Family Therapy. Her postgraduate studies include work at the Ackerman Institute for Family Therapy in NewYork City, where she served as a family therapist. Ms. Keller's professional interests focus on couple relationships, periods of stress and life transitions, and 12-step approaches. She is currently Director of Clinical Services for the New Learning Center (Westport, Connecticut). Stuart Korean, Ph.D., has been actively involved in community-based mental health in the Boston area for many years. He was the founder of Choate Health Management, a service and consulting organization based in the Boston area. Dr. Korean's chapter, co-written with Elizabeth Brenner, M.S.W., outlines a picture of the future of integrated behavioral health care providers who are asked to straddle the public and commercial managed care sectors. Lisa M a h o n e y - T o t h , M.S.W., has been active in various training and clinical pro-
grams in behavioral health care. Ms. Toth has worked in inpatient, outpatient, and day hospital settings, and was Regional Director for U.S. Behavioral Home Care, Inc. Ms. Toth has also been a senior case manager for one of the country's first behavioral managed care firms. Currently Ms. Mahoney-Toth is senior social worker on a program for home-bound elderly in NewYork City. Alan Menikoff, M.S.W., M.B.A., has worked in community psychiatry as clinician, supervisor, manager, and chief executive officer in the not-for-profit and commercial mental health sectors. Mr. Menikoff is the founder of U.S. Behavioral Home Care, Inc., a New York City-based psychiatric home care company. Mr. Menikoff's publications include articles on group therapy and a
About the Authors
vii
comprehensive review of the national costs of schizophrenia, co-authored with Dr. Kenneth G. Terkelsen. Glynn R u d i c h , M.S.W., A.C.S.W., is acting Director of Field Education at the Hunter College School of Social Work of the City University of New York. Ms. Rudich has extensive experience working with schizophrenic patients and their families. She has served as a social worker on inpatient units both in the state hospital system and in the voluntary sector, and has been a member of a research project examining the interaction between families and relapse rates among patients with schizophrenia. Since 1988, she and Carla Daichman have collaborated in their work with families and parent groups. They have presented their work to a number of professional audiences in the area of group work and long-term psychiatric conditions. Adella Wasserstein, M.D., is currently Medical Director for a program for homebound elderly in NewYork City and has a private practice, specializing in severe psychiatric disorders. Dr. Wasserstein has also been actively involved with American Psychiatric Association committees on managed care and residency training curricula, in addition to a variety of training and clinical programs in behavioral health care. Jessica Wolf, Ph.D., is a seasoned administrator, educator and consultant in organizational development and human resource development in the behavioral health field. She is the founder and Director of the MERGE Mental Health Certificate Program at Housatonic CommunityTechnical College in Bridgeport, Connecticut. This program trains students, including individuals with psychiatric diagnoses, for entry-level positions in behavioral health, including roles in behavioral home care.
This Page Intentionally Left Blank
Contents
Introduction
1
xix
An Overview and Economic History of Psychiatric Services Alan Menikoff
Chapter Summary National Expenditures for Mental Health Services A Tale of Two Systems Clinical Case Management Development of the Managed Care Industry Consolidations in the Behavioral Managed Care Field Privatization of Public Psychiatry References
2
The New Players in Psychiatric Home Care Alan Menikoff
Chapter Summary Current and Prospective Providers of Psychiatric Home Care Hospitals as Providers of Psychiatric Home Care Commercial Home-HealthAgencies Not-for-Profit Home-HealthAgencies Family Service Organizations and Psychiatric Rehabilitation Programs Outpatient BehavioralHealth Care Organizations Integrated Behavioral Health Organizations The Future of Behavioral Health Care Reference
11 12 12 13 15 15 16 17 17 18 ix
x
3
Contents
Clinical Issues in Delivering Home-Based Psychiatric Services Joel Kanter Chapter Summary Historical Background of H o m e - B a s e d Psychiatric Services Advantages of Office-Based Services Economy Privacy Control Comfort and Security "Holding Environment" Responsibility Structure and Socialization Improvement of Social Skills Advantages of H o m e - B a s e d Services InVivo Assessment Engagement of Social Network Treatment of"Home-Bound" Patients Engagement of Reluctant Patients Professional and Social Responsibility Indications for H o m e - B a s e d Services InVivo Assessment Engaging Reluctant Patients Ongoing Home-Based Psychiatric Care Contraindications for H o m e - B a s e d Services Physical Risk to Clinicians Patient Unavailability Intense Transference Reactions Environmental Chaos Evidence of Manipulativeness Intervention Patterns in H o m e - B a s e d Services Assessment and Crisis Intervention Short-Term Assessmentand Engagement Ongoing Low-Intensity Outreach Ongoing Home-BasedTreatment Ongoing Support and Monitoring H o m e - B a s e d Psychiatric Services in a Managed Care C o n t e x t Staffing Patterns FacilitatingTransitions between Home- and Office-Based Care Conclusion References
4
19 20 21 22 22 22 22 22 22 22 23 23 23 23 23 23 24 24 24 26 27 29 29 29 29 30 30 31 31 31 32 33 33 33 34 35 35 36
The Goals and Principles of Psychiatric Home Care Alan Menikoff Chapter Summary
39
Goals of Treatment
40
5
Contents
xi
Stabilization Recovery Maintenance and Prevention Principles o f Behavioral H o m e Care Principle #1: Establish and Maintain a Therapeutic Alliance Principle #2: Monitor Clinical Condition (i.e. Ongoing Assessments) Principle #3: Educate the Patient and Significant Others Principle #4: Encourage Treatment Compliance Principle #5: Foster Structured, Fulfilling Daily Activities Principle #6: Enhance Patient's Grasp of the Illness, Identify New Episodes Early, and Help Patient Adapt to Psychosocial Effects of the Illness Principle #7: Reduce the Morbidity and Sequelae through the Use of Community Supports References
40 41 42 42 43 45 47 49 50 52 54 56
Home Cafe's Inte~ace with the Psychiatric Hospital System Winifred Christ Chapter S u m m a r y Indications and Contraindications for Psychiatric H o m e Care Options for H o m e Care Option A: Short-Term, Low-Intensity Treatment Option B: Short-Term, High-Intensity Treatment Option C: Long-Term, Low-Intensity Treatment Option D: Long-Term, High-Intensity Treatment Collaborating with the Outside H o m e - C a r e Provider Effecting a Transition to the H o m e - B a s e d Team Partnering with Families and Nonpsychiatric Providers Differential Use of Staff Variables Affecting the O u t c o m e o f Psychiatric H o m e Care Utilization Patterns Clinical Outcome Cost Comparisons Patient Satisfaction S u m m a r y o f Positive Factors in H o m e Care O p e n Issues in H o m e Care References
6
59 60 61 61 62 62 63 64 66 67 68 69 69 70 71 71 72 72 73
Ingredients of a Successful Collaboration between a Social Worker and Psychiatrist in an Extended Recovery Program Lisa Toth and Adella Wasserstein Chapter S u m m a r y Part I: T h e Value o f Collaboration
75 75
xii
Contents Ingredients for Success Defining Success The Process of Reintegration Part II: M a r y - - A Case Study Elements of Success
7
76 77 77 78 83
Families in Crisis :A Model for the 1990s Linda A. Keller and Gerald M. Arndt Chapter Summary Historical Perspective and Theoretical Underpinnings Description of the Family Response Team Approach Case Studies and the Nature of Crisis The Situational Crisis The Life-Cycle Crisis The Repetitive Crisis The Stockpile Crisis References
8
87 88 90 94 94 95 95 96 97
From Hospital-at-Home to Community Living: The Family'sJourney Glynn Rudich and Carla Daichman Chapter Summary Families as Caregivers Origins of a Parent Support Group The Life of the Group Phase One: Breaking the Isolation PhaseTwo:The Family's"Recovery" Phase Three: IncreasedIndependence References
9
99 99 101 102 103 106 108 111
The Experiences of
an Integrated Behavioral Health Organization Elizabeth G. Brenner and Stuart K o r e a n Chapter Summary H o w the Family Support Team Got Started Transferring Public Sector Models to Private Managed Care Agreements Referral Profiles Outcome Figures Differential Profiles and Expectations: Department of Social Services versus Managed Care Organizations Level of Care Criteria
113 114 114 117 120 121 123
Contents Models of Reimbursement The Per Diem Rate The Per Session Rate The Weekly Rate The Case Rate Fee-for-Service or Hourly Rate Capitation Summary Comments Reference
10
xiii 125 127 128 129 129 131 132 132 133
Roles for Paraprofessionals in Psychiatric Home Care Jessica Wolf Chapter Summary Rationale for Paraprofessionals in Psychiatric H o m e Care Competencies Needed by H o m e - C a r e Paraprofessionals Applicable Training Models Follow-up with Student-Trainees Implications for Training and Service Delivery Effective Use of Paraprofessionals: A Clinical Case Example Conclusion References
135 135 137 138 140 140 141 142 142
Appendix A
Outlines of a FocusedAssessment: Symptoms, Stressors, Supports The Value of a Psychosocial Assessment Four Indexes to Help Guide Assessment The Clinical Index The Historical Index The Social Index The Sufficiency Index
145 146 146 148 148 149
Appendix B
Designing and Maintaining a Behaviorally Anchored Treatment Plan Targeting the Behaviors That N e e d Change Identifying General Domains of Functioning Setting Goals Establishing Behaviorally Stated Objectives Preparing Service Plans
151 152 152 153 155
xiv
Contents
Appendix C
A Syllabusfor Intensive Case Management Training T r a i n i n g Objectives
157
T r a i n i n g C u r r i c u l u m and Objectives
158
The Philosophy of Home-Based Care A History of Clinical Case Management Services Psychiatric Rehabilitation Principles: The Patient as Active Agent High-Risk Factors in a Community Setting: Noncompliance, Transition Periods Persistent Psychotic Illness from a Patient's Perspective Engaging Families as Allies in Treatment: Helping Families "Recover" and Identifying the Supports They Need Coordinating Services among Several Providers--Psychiatrists, Day Hospitals, Inpatient Services, Residential Programs Engaging a Client in a Extramural Setting Index
158 158 159 159 159 160 160 160 161
Contributors
Numbers in parentheses indicate the chapters on which the authors' contributions begin.
Gerald M. Arndt (7) Westport, Connecticut
Stuart K o m a n (9) Winchester, Massachusetts
Elizabeth G. Brenner (9) Woburn, Massachusetts
Lisa Mahoney-Toth (6) Brooklyn, NewYork
Winifred Christ (5) White Plains, NewYork
Alan Menikoff (1, 2, 4) NewYork, NewYork
Carla D a i c h m a n (8) NewYork, NewYork
Glynn Rudich (8) NewYork, NewYork
Joel Kanter (3) Silver Spring, Maryland
Adella Wasserstein (6) NewYork, NewYork
Linda A. Keller (7) Westport, Connecticut
Jessica Wolf (10) Fairfield, Connecticut
XV
This Page Intentionally Left Blank
Acknowledgments
As is fitting with a book on home care, many thanks are due to my home care team. Alexander regularly advised me on the right hardware and kept the computers running smoothly. R o b i n was the grammarian for the first drafts. Their mother, my wife of 25+ years, Carla Daichman, continues to be the support and voice of reason in my personal and professional life. This supremely competent clinicianmand able writermprovided invaluable guidance on a host of clinical issues while her numerous suggestions about early draftsmshe has a gift for succinctly, eloquently presenting the reader with a clinical portraitmhave undoubtedly made this a better book. Still close to home are a couple of colleagues whose contributions are not evident, but are greatly appreciated nonetheless. Henry Spitz, M.D., has been a tremendous friend, reviewing several early drafts of this book as I struggled to give my ideas the structure you see in the following pages. Kenneth G.Terkelsen, M.D., taught me the fun one can have co-authoring a professional piece and by doing so indirectly encouraged me to undertake this project. O f course, a heartfelt thanks to George Zimmar, my editor at Academic Press. I first met George Zimmar at a conference in Dallas, many months back. George understood well that the center of gravity for behavioral health care was rapidly shifting away from brick-and-mortar facilities, with home care projected to carry a greater burden. George was an early believer and remained committed to seeing this book come to light. And finally, a note of thanks to a departed colleague. Russell A. Nixon, Ph.D. was teaching at the Columbia University School of Social Work during my years of study there. Russ was a liberal, even radical, economist at a time w h e n some in this country believed that the federal government had a legitimate role in rounding off the worst edges of unbridled capitalism-protecting those whose "buying" power is insignificant.Those of us at C U S S W who
oo XVll
xviii
Acknowledgments
cared to listen to Russ learned that even the best-conceived public services are anemic engines measured against the power of an unfettered market economy. Over the last 15 years, we have seen this private-public tension played out in raw terms within the health care fieldmand most poignantly in psychiatric care, historically a public-sector service. One goal of writing this book was to illustrate the need to insulate certain pockets from the fringe extremes of market-driven health care. I believe my analysis would be acceptable to Russ, but of course, the words and positions are mine.
Introduction
More than 50% of all Americans with health insurance are covered by some variety of managed care arrangement.This might be a formal health maintenance organization (HMO), where the pool of doctors is tightly limited, or a more open managed care arrangement in which the insurance company has established a panel of health care providers who agree to accept payment rates and certain clinical guidelines. Whatever the arrangement, the thrust in all health care is to limit expensive procedures and to minimize the incidence and duration of hospitalization, in preference for ambulatory care. This "new" wave of health care reform has touched every corner of our health care delivery systemmespecially the manner and venues of psychiatric care. This book offers a view of the current psychiatric care landscape in the United States, with a particular focus on the changes wrought by this upheaval called managed care. More specifically, it outlines some of the challenges facing mental health practitioners as the locus of care moves from inpatient to community-based services, with special emphasis on bringing the care to the client's home. It also provides readers with an overview of the technology available to at-risk patients struggling to recover outside of hospitals. In addition to describing the services needed, this volume suggests how behavioral home care services are best delivered, who should provide these services, and how patients can be engaged most effectively. While it is addressed to all mental health professionals who have an interest in working with high-risk patients and an appreciation for trends in community care and managed care, it should be of particular interest to the following groups: 9 For the clinician who has not worked with enduring psychiatric conditions, the book provides an introduction to the field of community psychiatry and a history of services for this population. ~ For the clinician whose experience has been predominantly in shortterm settingsminpatient or emergency rooms--this manual provides a new xix
xx
Introduction orientation to psychiatric illnesses, along with an understanding of what the patient faces once the crisis is resolved, the natural course of these illnesses, and how community resources can be employed to improve the outcome for patients residing within the community. 9 For the clinician who has worked in community psychiatry, perhaps in the public sector, and to w h o m these services will be familiar, the manual contains advice on providing services within the context of managed care. 9 And for the executive responsible for directing an organization's clinical resources, this manual offers a fresh look at opportunities for expansion--for example, the C E O of a home-care company will appreciate the possibilities of a new service to offer payers, and the clinical director of an integrated behavioral care organization will be better able to decide whether the time is right to add home care to its list of services.
Psychiatric home care is as new as the managed care field that emerged in the 1980s and as old as our records of psychiatric care. However, only in the second half of the 20th century has the field of psychiatry attained the technology to sustain psychiatric patients out of asylum hospitals and offer them reasonable hope for recovery. As used in this book, the term psychiatric home care is both a philosophy and an emerging technology. This ideology asserts that even the most dysfunctional patient can benefit from focused interventions driven by a philosophy of rehabilitation and targeted relapse prevention strategies. Professionals working in this arena operate with increasing confidence that persons with enduring psychiatric illnesses can be sustained in their community, recover many of the social skills lost to the illness, and resume many of their social roles. In essence, it is a philosophy of rehabilitation and maintenance rather than cure. There are clear economic and political influences that have fostered communitybased care for persons recovering from mental illness. These include the following: 9 the rights of mentally ill patients and the family advocacy movement embodied in the National Alliance for the Mentally Ill, as well as the broader patients' rights movement expressed in the American Disabilities Act; 9 pharmacological developments that include two generations of neuroleptic drugs for the management of psychiatric symptoms, including Thorazine, Prolixin, Respiridone, Clozapine, and Olanzapine; 9 not least the economic considerations emanating from budgetary anxieties at the state and federal level, as well as backlash from the rapid rise in health care costs witnessed in the late 1970s and early 1980s. The 1990s are shaping up as a period of massive experimentation in structuring behavioral health services.The public sector has demonstrated that structured aftercare services can be a cost-effective alternative to extended hospital stays. These findings are n o w encouraging a similar trend in the commercial or private sector.
Introduction
xxi
As these two economic sectors merge, services will be refined and modified, the structures of payment will be altered, and new providers may enter the field. The new economic agents, managed care organizations (MCOs) and HMOs, are searching for less costly means of delivering care at the very point at which the field has a heightened understanding of mental illnesses and the technology to manage most of them, most of the time, outside of the hospital. Psychiatric home care is emerging as an essential element of the current marketdriven experiment. Payers find it attractive because it reduces inpatient visits, the most costly element in psychiatric care. Professionals find it attractive because they have seen it work in other clinical-economic settings. And clients and their families find it attractive for a number of reasons, not the least of which is because it helps minimize relapses with their life-threatening implications. The parameters of home-based psychiatric care are still evolving. Services can include crisis management, direct therapeutic treatment, medication management, support of treatment compliance and activities of daily living, advocacy and resource linkage, and 24-hour on-call and emergency response. Home care also involves various levels of care--as distinct from inpatient and day treatment services, which are facility-based and "clustered" in delivery format. Behavioral home care encompasses a fluid set of interventions specifically tailored to individual clients and individual situations. Through these interventions, best described as assertive management, clients are supported over the immediate crisis, are educated about the illness, and are provided ongoing supports designed to achieve maximum recovery and reintegration into the life of their community. The interventions provided by psychiatric home care may fluctuate widely, but one element is constant: it encourages the individual client, as well as the family or network, to become active participants in recovery and rehabilitation. It has been argued that psychiatric conditions are the most debilitating of all medical conditions that do not inevitably lead to an early death. Few other conditions leave the patient so disabled for such an extended period of time. The symptoms of mental illness--cognitive disorganization and immobilizing depressionminterfere with many other spheres of a patient's life, including personal hygiene, social relations, and job and vocational plans. During the lengthy recovery period, patients require assistance with a number of life tasks if they are to remain as functioning members of society. This is where home care can make the biggest differencemby focusing on the short-term and longer term service needs of patients with debilitating psychiatric conditions. The interventions described in this book are often associated with efforts to support schizophrenic patients in the community.There is a growing body of literature supporting focused psychosocial interventions in managing this illness (Penn, & Mueser, 1996). Researchers and clinicians recommend case management services for patients with bipolar illness, as well. Reports from the field suggest the economic and clinical wisdom of extending these services to other clinical conditions, including schizoaffective and borderline personality disorders.
xxii
Introduction
The home-based care field is still in flux and will undergo many more changes. However, this manual is an attempt to identify and define the basic technologies, interventions, and economic and market considerations that are an innate part of its makeup, and offer some practical suggestions for handling its many complexities. I chose the multiauthor approach to allow experts in their respective areas to address home care from various relevant perspectives, including that of managed care. Chapter 9 by Brenner and Koman details several alternative payer arrangements, including variations on capitation, the hallmark of true managed care arrangements. This chapter is a report from the front on structuring clinical care without compromise while working within a managed care arrangement. Chapter 5 byWinifred Christ addresses the benefits a patient derives from a coordinated transition from inpatient to home care and how inpatient care can be used judiciously to fortify ongoing support. In chapter 3, Joel Kanter offers insights into the clinical advantages and dangers of bringing behavioral health care to the home. In chapter 8 Glynn Rudich and Carla Daichman share the nightmare of families t h i n g to mange a psychiatric condition at home when ambulatory services are too thin or otherwise inadequate. Lisa Toth and Adella Wasserstein discuss in chapter 6 the effectiveness of coordinated office-based treatment and home-care interventions. Linda Keller and Gerald Arndt show the effectiveness of engaging family and interested others in home-based care (chapter 7). And Jessica Wolf explains in chapter 10 how the use of paraprofesionals can hold down costs and offer the flexibility required in adjusting to the changing seas of behavioral health and managed care. The clinical, administrative, and economic strategies and interventions described by these professionals are enhanced by clinical vignettes showing how they were used to benefit psychiatric home-care patients. In addition, the appendices offer practical, concrete suggestions for constructing a focused assessment, designing a behaviorally anchored treatment plan, and providing intensive case management training to those who will deliver home care. Home-based care is a concept that is coming into its own in this era of medical necessity and managed care.As we have learned from our colleagues in other fields of medicine, it is no longer sufficient to be a savvy and competent clinician. Nor is it sufficient to be effective at negotiating service contracts. In this new clinicaleconomic landscape, good providers must be able to meld their clinical skills with a sound understanding of health care finance.
REFERENCE Penn, D., & Mueser, K. (1996, May). Research update on the psychosocial treatment ofschizophrenia. AmericanJournal of Psychiatry, 153, 5.
CHAPTER
1
An Overview and Economic History of Psychiatric Services Alan Menikoff
CHAPTER
SUMMARY
The field of psychiatric services is undergoing a massive transformation, from the top down and from the bottom up. State and federal regulations are being rewritten.The economic infrastructure is morphing from a cottage industry of individual practitioners to an amalgam of public and private programs.Almost monthly a new drug for treating schizophrenia or depression receives regulatory approval. The focus of care has shifted its center of gravity, creating entirely new organizational playersmmanaged care organizations.The brisk growth of the managed care industry in the field of behavioral care is a direct response to the dramatic increase in private-sector spending that followed the liberalization of benefits for psychiatric care that took place in the 1960s and 1970s. The following pages weave together an overview and economic history of psychiatric services in the United States with the current developments in the field, led by economic factors and the move to managed care. This background is presented to help the clinician and administrator understand how the new hybrid systems of psychiatric care came about, anticipate the direction in which psychiatric care is moving, and determine what "retooling" is indicated to meet expected needs and offer quality care within the parameters of managed care. Psychiatric Home Care: Clinical and Economic Dimensions
Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
2
Psychiatric Home Care: Clinical and Economic Dimensions
NATIONAL
EXPENDITURES
FOR
MENTAL
H E A L T H SERVICES There are several sources of data on the amount spent on direct care for psychiatric services. In recent years, the National Institute of Mental Health (NIMH) commissioned two studies to calculate the direct costs associated with schizophrenia and manic-depressive illness.Their summary findings were as follows: annual direct costs of treating schizophrenia, $19 billion; annual direct costs of treating manicdepressive illness, $7 billion (Wyatt & Henter, 1995). In a previous and broader study examining direct costs associated with mental illness and alcohol and substance abuse, the authors estimated annual direct costs for mental illness at $45 billion (Rice, Kelman, Miller, & Dunmeyer, 1990). The "real" costs of psychiatric illnesses are much higher if indirect costs are included (i.e., lost productivity due to disability, premature death, etc.). In recent studies, indirect costs have also included the "lost productivity o f . . . caregivers who take care o f . . . [ill] family members" (Wyatt & Henter, 1995). This is a major concern of patients' families and policy makers and has become increasingly important with the shift to ambulatory car2. Indeed, an entire chapter later in this manual is devoted to the psychological and economic burdens carried by four families, as revealed through a family support group. What services are being purchased with the $45 billion spent annually on psychiatric care? Historically, public sector dollars for direct care have been spent disproportionately on inpatient services. Because of advances in pharmacotherapies and refined psychosocial services, most patients can now be sustained in the community. This is where the economic models and clinical concerns are ultimately leading psychiatric care, whether one looks at the public sector, the private sector, or at the intersection of the t w o - - t h e privatization of the public sector. However, there is strong evidence that, for the moment, economics are driving the system, with clinical needs receiving secondary consideration. Community-based services have not yet developed in numbers or character adequate to the task. The $45 billion is not yet supporting "smart" systems of care. In the oft-quoted A National Study of Transitional Hospital Services in Mental Health (Dorwart & Hoover, 1994), public health analysis revealed gaping holes in the aftercare network for psychiatric patients: Objectives: Shift of care for the seriously mentally ill from inpatient to communitybased treatment has highlighted the importance of transitional care. Our objectives were to document the kinds of and quantity of transitional services.... Results: Half (46%) of the facilities surveyedprovided patient follow-up of I week or less, and almost all (93%) conducted team review of discharge plans. However,74% provided no case management services. Clearly, the services required to address the aftercare needs of psychiatric patients lag behind the need. Since this is the market that psychiatric home care is designed to address, it behooves us to understand how we arrived at this crossroads.
An Overview and Economic History of Psychiatric Services
3
A TALE OF T W O S Y S T E M S This country developed both private and public sector systems of mental health care, systems that were sometimes overlapping and sometimes quite distinct. In the late 1990s, these systems of care are merging as the private sector becomes "corporatized" and identifies business opportunities at the public trough and the public sector dismantles old systems and moves to the privatization of public mental health services. A fundamental trend in this resulting third wave of mental health systems is that more and more service dollars will be devoted to ambulatory programs, including psychiatric home care. The private sector " s y s t e m " n n o t so much a system as an industry of small businesses-has traditionally catered to the patient with an acute or reactive condition, the patient with "problems of living." Providers in this system have included the family physician, who has given counseling, and perhaps tranquilizers, to help the patient through a rough period, and the mental health practitioner (psychiatrist, psychologist, and, most often, psychiatric social worker), whose practice has been devoted largely to nonpsychotic conditions. The patient with an enduring psychiatric condition (recurring depression, schizophrenia, bipolar illness) whose symptoms and management require more extensive services, traditionally has turned to a separate system of care, with different providers and different economic supports--the public sector. Generally these are the patients we are concerned with here, along with the associated services that have their origins in the public sector. Hospitals in the public and private sectors also have different ancestors. Beginning in the late 18th century in Europe and the early 19th century in the United States and Canada, individuals with severe mental illness were sent to asylums for the insane located at a considerable distance from the cities (Rothman, 1971). Under increased medical supervision, these institutions evolved into the private and state mental hospitals of the current era. The hospitals serving the private and "middle-class" patient have another pedigree. Following World War II, many general hospitals opened psychiatric units for the first time. In contrast to mental hospitals, these were usually located directly in population centers. In clinical terms, these general hospitals were the precursors of the commercial psychiatric hospitals, which blossomed primarily in the unregulated Sun Belt states during the 1980s. Aftercare systems also sprang from different roots. The department of psychiatry at a general hospital might maintain a small outpatient program. More commonly, psychiatric care outside of the hospital walls came from physicians in private practice. In urban centers, aftercare was delivered through psychotherapy services provided by physicians and nonphysicians alike. Currently, clinicians with a master's in social work (MSWs) provide the lion's share of psychotherapy in the United States. The financial supports for these systems of care were similarly distinct.The public sector was financed by general tax revenue dollars secured through state taxing
4
Psychiatric Home Care: Clinical and Economic Dimensions
authorities and later through Medicaid, the joint federal- and state-financed program directed by the federal HCFA. Until the 1950s and 1960s, these services consisted of large state hospitals where patients resided for months and years. Starting in the 1950s and early 1960s, an extensive network of clinical services was developed for the patient with chronic psychiatric illness. States diverted funds from state hospitals to day hospitals, continuing day-treatment programs, halfway houses, and supervised apartment programs. Beyond these services, and often holding these services together, was a developing model of care called clinical case management. CLINICAL
CASE MANAGEMENT
One ancestor of psychiatric home care is clinical case management--often traced back to Madison,Wisconsin, where Drs. Leonard Stein (psychiatrist) and Mary Ann Test (social worker) developed clinical teams to take the care to the patient (Stein & Test, 1980).Their Program of Assertive Community Treatment (PACT) was a deliberate effort to convert public funds, previously devoted to inpatient services, to community supports designed to maintain chronic psychiatric patients in the community. Wisconsin still has one of the country's best developed case management programs. Currently, clones operate in nearly every state in the country, almost always financed with public funds. As patients were encouraged to rejoin community life, mental health professionals and administrators came to recognize the breadth of nonpsychiatric services provided in a state hospital: food, lodging, and social activities, including work.These services and supports, while not medical in the conventional sense, were necessary if the patient was to succeed in the community. Because psychiatric patients are poor self-advocates and self-brokers, much of the work of the PACT program has been devoted to advocacy activities--an important consideration for medical conditions with unpredictable courses--and coordination of care to prevent relapse. While the public sector was experimenting with new models of care, such as clinical case management, the private sector was expanding the quantity of services delivered, if not innovations in care.The managed care industry is one result of this growth in expenditures for behavioral health care in the private sector. DEVELOPMENT THE MANAGED
OF CARE INDUSTRY
In the private domain, there has been a dramatic growth in psychiatric and substance abuse services over the last several decades (Wyatt & Henter, 1995). During the 1960s and 1970s, a liberalization of benefits for psychiatric care coincided with increasing episodes of substance abuse. This heightened demand for psychiatric care--especially inpatient care--combined with an "open pocketbook" for mental health and substance abuse benefits at some of the country's leading employers, led
An Overview and Economic History of Psychiatric Services
5
to a dramatic increase in private sector expenditures. The inroads made in the psychiatric field by the managed care industry in a short time are a clear, direct, and immediate response to this explosion of mental health expenditures. Viewed at a distance, the entrance of managed care into home psychiatric care represents an attempt to bring rationality to a system that has been marked by arbitrary and disjointed treatment.The noble impulses of managed care were to establish accepted standards of treatment that consumers could turn to in evaluating the efficacy of various providers. At its worst, the managed care industry has degenerated into a set of niggardly gatekeepers, whose apparent function is to deny service. Somewhere between these extremes the field has developed a series of"soft standards" and a tighter, though still fragmented, system of care. Managed care firms have tried to go beyond operating on a case-by-case basis. They have attempted, with varying degrees of success, to develop a system of care and to manage the care itself. In essence, managed care worked toward establishing a series of services provided by designated professionals operating under the control of the managed care agent.The goal of managed care was to allow a large employer or union to go to the managed care firm for "one-stop shopping" for any number of psychiatric care services (inpatient, outpatient, day program, residence, child therapy, pharmacotherapy, etc.).These firms were striving to re-create for the private patient the unified system of care developed in the public sector. The unified system of care available in the commercial sector is the end result of the efforts referred to as behavioral managed care. It is the third, or mature phase, of the behavioral managed care industry, an industry that has gone from infancy to maturity in less than 20 years. Developments associated with the maturation of an industry can be seen in this field, with similar outcomes to those that have occurred in other fields as a result of consolidations. These include standardizing of "services," downward pressure on pricing, and reduction in the number of "vendors." In recent years, there has been a blurring of boundaries between the commercial sector and the public sector. Commercial H M O s and publicly traded insurance companies are moving to enroll Medicaid patients, among them "our" psychiatric patients, a group generally not recognized through indemnification insurance programs. In this context, the behavioral managed care field has turned to the public sector to identify clinical interventions that have not been called for in the private sector: partial hospitals, community residences, and clinical case management, or home care.We have arrived at this point through the consolidations described below.
CONSOLIDATIONS MANAGED CARE
IN THE FIELD
BEHAVIORAL
A maturing industry is marked by vertical and horizontal integration among the major vendors or service organizations in the field. This has been happening at a rapid pace in behavioral health.
6
Psychiatric Home Care: Clinical and Economic Dimensions
Vertical integration refers to an arrangement in which one organization controls the channels that carry a product or service to the end user. The conventional example of vertical integration is the auto manufacturer who owns the mines where the ore is collected, the plants that produce the steel from the ore, the assembly line where the automobiles are produced, the trucking companies that transport the cars to the dealers, and the dealerships themselves. More contemporaneous examples are seen every day in business reports on the entertainment-communications field (cable TV, TV studios, etc.). In this context the companies (e.g., cable companies) are trying to control both the content, by producing the product, and the means of distribution. What does vertical integration look like in the behavioral health care field and why do we care? In the summer of 1995, ~ purchased the managed care business from Medco.This was KKR'S first foray into the health care field. Before long, it became clear that this new firm, renamed Merit, was not content to manage behavioral health care, as its antecedent organization had been. While Merit continued to operate as an agent of the country's major employers, purchasing behavioral health services and monitoring the quality of care, the company also began to provide the care itself. The ~ history is a rather dramatic example because of the large sums of money involved, the name of KK_R., and the stature of the Medco MCO. H o w ever, this type of vertical integration is occurring throughout the country with smaller players. The new vertically integrated behavioral health care companies sometimes develop from the bottom up. In these situations, successful group practices band together and contract directly with the same area's employers to function as M C O and provider both.The result is the same as with the K K R / M e r i t scenario: one organization has the dual role of monitoring the care and providing the care. Not all of the consolidations in the behavioral health field have occurred along vertical channels. There are also consolidations and marketing efforts focused on horizontal integration, a business strategy of broadening the products or services offered by one organization.Whereas vertical integration seeks to gain control along the distribution channel, going upstream to the sources of production and downstream to get closer to the end user, horizontal integration attempts to broaden the stream by introducing entirely different products and services. Often the competitive advantage here is the name or logo recognition. Again, one can look to the entertainment industry for illustration. For years, successful movies for children have been followed with action figures or cartoon figures based on the characters from the movies. Cinderella, the movie, will be released while Disney is also licensing the production of Cinderella dolls, Cinderella pajamas, Cinderella drinking glasses, and so on. In health care, this horizontal integration is driven by an organization's reputation for quality care, which allows it to attract more "customers" by offering new
An Overview and Economic History of Psychiatric Services
7
or expanded services. Examples include the inpatient provider with a reputation for treating eating disorders that decides to provide alcohol detox services. Or the adolescent day treatment program that decides to offer day services to adults.This is already happening in home care as commercial home-care companies and visiting nurse associations (VNAs) move from medical/surgical practices to psychiatry. These changes in the economic structure of mental health servicesmconsolida tions, mergers, moves to vertical and horizontal integrationmhave been brought about by behavioral managed care. Phase one of the commercial managed care development was launched when large employers engaged carve-out MCOs to manage the mental health/chemical dependency premiums. The MCOs began by identifying providers practicing in the right geography and negotiating rates with these providers. During this period~let's call it the "retail" phase--the MCOs attempted to manage the care on case-by-case basis. In this first stage of behavioral managed care, individual practitioners remained independent, but they learned that the traditional gatekeepers had been replaced as the referrals began to come from the managed care firms in their area. Thus, the clinician or provider organization lobbied to get on the panel of the few MCOs that acquired the contract for the big employers in the area. It is no coincidence that one of the first and now largest MCOs grew up under a contract with IBM. If one practiced in the area where IBM had a large labor force and wanted to ensure against being "locked out," it was necessary to get on the panel of IBM providers. In the next phase, the wholesale phase, the MCOs began to limit the number of providers. (Theoretically, the panels could be open to all providers meeting the MCO's qualifying standards. As a practical matter, administrative costs associated with having an oversupply of providers dictate that MCOs will elect to limit the panel size.) One of the motives for this limitation was economies of scale. The MCOs discovered that as their patient base increased, they could not precertify every case and conduct an adequate concurrent review of each client's care. So they took the next step. Rather than try to review each client's treatment, they established provider profiles that they used to select a limited number of providers. Once they had culled these providers, who would operate within defined critical paths, there was less of a burden for concurrent reviews of each case. The K K R / M e d c o strategy marked phase three of the managed care consolidation process. In this phase, the M C O moves to become a provider, and large providers band together to become an MCO.As the providers and the MCOs become homogenized, in reality or in effect, the practitioner must become part of the MCO/provider organization or secure a place on the panels.The small independent practitioner is forced out. He does not have the economies of scale available to the larger providers, and he cannot provide the "one-stop shopping" desired by wholesale purchasers. Thus, in the current third phase of the consolidation process, there will be fewer small players and less room for innovation beyond industry standards.
8
PsychiatricHome Care: Clinical and Economic Dimensions
PRIVATIZATION
OF P U B L I C P S Y C H I A T R Y
The MCOs, developed originally to serve the economic interests of large employers, are now turning their attention to the public sector.With this change in orientation, the private sector begins to function like the public sector. Each has a centralized body that controls the referral of patients, sets rates, and designates a limited number of providers. In this latest phase, the public sector service models are also migrating to the private or commercial sector. In the 1980s, it was fashionable to observe that while the USSR was moving away from a centralized, planned economy and opening its doors to democracy and capitalism, the bulwark of capitalism, the United States, was moving towards greater governmental influence on markets.Arguably, the most distinct example of this, in the health care field at least, were elements in the Clinton health care reforms, specifically the regional health care "agencies," designed purposely to "correct" distorting market influences. Although these reforms never saw the light of day, such mega-organizations are emerging in mental health as the public sector meets the commercial sector in the privatization of Medicaid. For a century, psychiatric care took place in asylum hospitalsmgenerally state hospitals, with some prominent exceptions such as the Friends Hospital in Philadelphia. Starting in the 1950s, the federal government used its fiscal clout to define services through its role as health care purchaser (Medicaid). In the 1990s, public sector psychiatry is virtually synonymous with Medicaid, the national health insurance program for the poor and disabled. Although Medicaid is a national program, each state sets guidelines for structuring the provider system. In theory, the Medicaid market was an "open market." Medicaid patients could take their insurance card and purchase services at any licensed provider that was comfortable with the Medicaid fee schedule.With the participation threshold fairly low for providers, consumers were guaranteed a choice of providersmmarket economics in operation.The result was that a psychiatric patient could, theoretically, take his or her Medicaid card and choose a pharmacologist or a day hospital from among the providers in the region.This phase began roughly in the early 1960s and lingered into the early 1990s. Starting in the late 1980s, a number of states petitioned the federal government for permission to dismantle this free-market Medicaid program and put in its place a managed care system with all the hallmarks of the commercial managed care system: one fiscal agency, an MCO, responsible for negotiating rates and selecting a closed panel of providers. When the circle is complete, the public sector historically a centralized system of care managed by a state mental health authority, will have been dismantled and replaced with a parallel system of care directed by a private mental health authority (MCO). Once the MCOs have developed the infrastructure to manage large-scale mental health benefits, the assumption is that they can employ this system (certified providers, a management information system, and
An Overview and Economic History of Psychiatric Services
9
a structured rate system) to serve the public sector. And, in fact, this is n o w happening across the country. Numerous states are asking for a "waiver" from the H C F A to allow them to limit the number of providers who will be eligible for Medicaid mental health payments. The intent is for the state to contract with one large organization that, in turn, will contract with a modest number of providers of psychiatric services to Medicaid patients in their designated region. In essence, the state would establish a mental health H M O . At this point, a number of states have experimented with privatization of the public mental health system, and reports are now reaching the policy analysts, clinicians, and administrators. A review of these privatization efforts is clearly beyond the ken of this book. However, it is clear that in these experiments the new mental health authorities are turning to more cost-effective services derived from the public sector, such as day hospitals and home care.The focus of past efforts in the commercial sector has not been the individual with a chronic or recurring illness. N o w that the commercial M C O s are moving into areas traditionally served by the public sector, they are looking to the public sector for models of care. This merger of the public and private may see its final expression in the last years of this century under the federal statute mandating parity for mental illness. In October 1996, H R 3666 was passed by both houses of Congress and signed by President Clinton. This ended a long battle, led in the Senate by Democrat Pete Domenici of N e w Mexico, to guarantee that health insurance policies provide coverage for mental illnesses on a par with the coverage provided for other medical conditions. This so-called "parity bill" has only a 2-year life (1998 through 2000), and it is rife with significant qualifiers (e.g., it covers only employers with more than 50 employees). Despite these limitations, it is landmark legislation. In the months before the bill took effect, virtually anyone with a stake in the care of those with psychiatric conditions~providers, insurance companies, managed care firms, clients, their families, state legislatures~deliberated how health insurance policies must be altered to remain in compliance with H R 3666, and how this federal mandate would alter the structure and character of psychiatric services. C o m m u n i t y services such as clinical case management and psychiatric home care will become valued models of care under the umbrella of parity. The following chapters are offered as a guidebook for preparing for this next phase of deinstitutionalization, with details on the who, what, where, when, and how of psychiatric home care.
REFERENCES Dorwart, R. A., & Hoover, C. W. (1994). A national study of transitional hospital services in mental health. Community Psychiatry, 84 (8), 1229-1234. Rice, D. P., Kelman, S., Miller, L. S., & Dunmeyer, S. (1990). The economic costs of alcohol and drug abuse and mental illness. Report submitted to the Office of Financing and Coverage Policy of the Alcohol,
10
Psychiatric H o m e Care: Clinical and E c o n o m i c Dimensions
Drug Abuse and Mental Health Administration, U.S. Department of Health and Human Services, Washington DC. Rothman, D. (1971). Discovery of the asylum: Social orderand disorder in the new republic. Boston: Little, Brown. Stein, L. I., & Test, M. A. (1980, April). Alternatives to mental hospital treatment: I. Conceptual model, treatment program, and clinical evaluation. Archives of General Psychiatry, 37 (4), 392-397. Wyatt, R. J., & Henter, I. (1995,August). An economic evaluation of manic-depressive illness. Social Psychiatry and Psychiatric Epidemiology, 30 (5), 213-219.
Tke New Players in Psychiatric Home Care Alan Menikoff
CHAPTER
SUMMARY
If industry trends continue, psychiatric care will be provided by integrated organizations with the capacity to offer a range of services. Dysfunctional patients requiring intensive care will be served through organizations that can deliver a range of services at "standard" rates.These organizations are equipped to serve as vendors to the wholesale purchasers of behavioral health c a r e - t h e managed care organizations (MCOs) and health maintenance organizations (HMOs) that are coming to dominate the field of behavioral health care. Both horizontal and vertical integration will characterize this corner of the health care industry: a general hospital with a department of psychiatry, a home-care company, a family service agency, and so on. Some of these providers have offered psychiatric home care under other terms. For example, psychiatric rehabilitation agencies have operated residential programs and supported housing programs for some years. Home-care companies, commercial firms, and the not-for-profits such as the Visiting Nurse Associations (VNAs) have a long history of home-based services. Now they are branching out into psychiatry. Hospitals are looking closely at their position in this changing clinical-economic landscape, and some are adding psychiatric home care to their list of services. Each organization has a different Psychiatric Home Care: Clinical and Economic Dimensions Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
11
12
Psychiatric Home Care: Clinical and Economic Dimensions
services orientation, gives priority to different clinical groups, and utilizes somewhat different clinical strategies. The sections that follow furnish an overview of some of the organizational providers and their philosophies, as well as subgroups addressed, staffing patterns, and payer profiles.
CURRENT AND PROSPECTIVE PROVIDERS OF PSYCHIATRIC HOME CARE Major urban centers probably offer the greatest opportunities for independent practitioners to develop a private practice in clinical case management. Provider experience in NewYork City, for example, suggests that these services can complement one's office-based practice. However, because of the shifting economic platform in behavioral health care, clinical case management services increasingly will be offered through organizations with a vertical or horizontal orientation to the behavioral health care market.
Hospitals as Providers of Psychiatric H o m e Care In many respects, general hospitals are the best positioned to offer psychiatric home care. The well-managed hospitals already recognize the wisdom, even necessity, of moving services from within their four walls. Most hospitals with psychiatric units are already partially vertically integrated: they have an emergency room, an inpatient unit, and some variety of aftercare services. The more ambitious ones offer partial in-hospital programs, intensive outpatient programs, and even residential programs. Thus, it is a logical step to extend psychiatric care to the home. In fact, a small number of general hospitals already offer these services under public auspices. As is the case with dedicated psychiatric hospitals, general hospitals with psychiatric units presumably have the human resources and infrastructure to support a program of home-based services.They already have in place mental health professionals, management information systems (MIS) unique to psychiatry, training programs for the clinical staff, and perhaps even some managed care agreements with "carve-out" MCOs. Beyond this, a psychiatric department of a general hospital will be in the stream for conventional sources of referrals from the formal and informal gatekeepers of psychiatric care: internists, gynecologists, the clergy, the managed care triage team, and so on. Although hospitals have the clinical staff, as well as the customer base, to provide a wide range of services, not many have organized to provide behavioral home care. There are several reasons for this. The profit margins have been too thin, and the base of patients who can benefit from psychiatric home care is still relatively small. The most profitable cost centers for hospitals are the high-tech,"big-ticket" procedures. Furthermore, psychiatry has never been a profitable specialty. Thus, even at
The New Players in Psychiatric Home Care
13
the small percentage of hospitals with well-developed home-care programs, there is very little activity in psychiatric home care.This likely will change, but for now there is no real financial incentive for hospitals to develop this service, given the mix of revenues available to them. Indeed, there are several reports of general hospitals accepting a capitated rate for psychiatric care only to discover that inpatient alternatives are just marginally attractive, while the facility still has the fixed expenses of maintaining an inpatient unit designed for a different clinical-economic point in time. As is the case with other providers, psychiatric units of general hospitals will have to "reengineer" their service models to remain competitive. However, in selected regions of the country, economic factors are shifting dramatically, making general hospitals more inclined to gear up to offer psychiatric home caremeither through their psychiatric department or through home-care departments. Several years ago, a general hospital in Connecticut with a small, but vertically integrated, behavioral health care program was considering offering psychiatric home care. Six months later, the hospital and the localVNA merged. Immediately, the managed care administrator began exploring how to integrate psychiatric service offered by the VNA into the psychiatric services offered by the hospital's department of psychiatry. For psychiatric hospitals, the home-based care picture is somewhat different. Financial analysts often remark that psychiatric inpatient units are undergoing transformation. The economic incentives to move to ambulatory programs are shifting and will likely shift more quickly as capitated financing becomes more prevalent. The prime revenue center at stand-alone psychiatric hospitals--those hospitals providing only psychiatric and substance abuse treatment~has been inpatient care. Many psychiatric hospitals find it impossible to make the mind shift, as the payers have done, from inpatient care as a revenue center to inpatient care as a cost center. Capitated systems are beginning to change these views and may force hospitals to invest in outpatient services simply to survive. Even those hospitals aware of the need to make this shift stop short of an aggressive approach to ambulatory programs, hobbled by institutional inertia.This inertia will be overcome as competition for revenue intensifies and behavioral care providers embrace the new market. Inpatient facilities will either learn to redirect their resources to ambulatory programs or fall by the wayside. Especially in unregulated states where health care organizations are unprotected from market forces, hospitals are reporting inpatient census levels well below those required to meet operating expenses.
Commercial Home-Health Agencies Another source of "competition" is the commercial home-care agencies. As all medical specialties have shifted the locus of care away from inpatient settings, the home-care industrymapart from psychiatric home care--has burgeoned. The
14
Psychiatric Home Care: Clinical and Economic Dimensions
number of home-care agencies has grown exponentially in the last decade, driven in large measure by the growth of Medicaid payments. Unlike integrated behavioral care organizations, home-care companies do not offer services spread on the vertical continuum: an emergency room, inpatient facilities, halfway house, day hospital, home care, outpatient facilities.Their "product" or service line may be broad or narrow, but it is distributed across the horizontal continuum: infusion therapies, and so on. Their talents and infrastructure have followed this horizontal development. These home-care companies are classic examples of horizontal integration, and are well situated to offer psychiatric home care. Home-care companies have developed tremendous infrastructure. The larger ones, even those that are privately held, have state-of-the-art MIS systems, including electronic billing systems for rapid turnaround of receivables. They have welldeveloped clinical records systems. Although these systems generally are not for psychiatric care, the infrastructure for that is in place. In addition, home-care companies employ sophisticated marketing professionals. O n the face of it, these should be the first organizations to pierce the market of psychiatric home care. And some of them have. But there are several hurdles for home-care companies to overcome.A primary hurdle is staff.Very simply, the staff of these agencies is usually not trained in psychiatry. Nurses and nurses aides are trained in postsurgical care that historically was provided in the hospital. Only a minority of clinical staff members have concentrated on psychiatry; most are neither trained nor equipped to provide the intensive psychiatric aftercare required of patients with major psychiatric illness. There is also a more short-term orientation to these home-care organizations and a lower comfort level with chronic psychosis in patients for w h o m noncompliance is an ongoing issue. The elderly depressed patient represents less of a management challenge than the 25-year-old with an active paranoid delusion. In fact, much of home care to date has focused on the elderly, although some of the organizations identified here are comfortable with a broader range of clinical conditions and are arguably better equipped for the next wave of ambulatory care programs. A second obstacle for home-care companies is what we refer to as the ChinaWall of managed care. Purchasers of health insurancememployers, unionsmcontract with health insurance companies or H M O s to provide health care to their employees or members. These premiums are calculated to cover all illnesses, based on actuarial tables of incidences of illnesses. However, as a practical matter, these premium dollars have been segregated between "mental health" and all other illnesses when it comes to purchasing services. This dichotomous history is precisely what has driven the development of behavioral managed care firms, which were charged with taking mental health premium dollars and managing the care within these specified economic boundaries. M C O s developed networks of behavioral care providers apart from other medical providers.The ChinaWall segregates M C O s and mental health providers on one side, and other health care providers and insurance companies on the other side.
The New Players in Psychiatric Home Care
15
Often the wall runs down the middle of the insurance company, with one side overseeing the psychiatric operations and the other side handling all other medical claims, provider lists, and the like. The progressive home-care organizations are projecting themselves into the years ahead and positioning themselves to provide psychiatric care. Over the last few years, the home-care literature has been booming with materials on psychiatric home c a r e - i n industry newsletters, nursing journals, and marketing pieces. Although most of these in-home psychiatric programs cater to the Medicaid population, at least one article reports on a growing contract between a national M C O and a national home-care company traditionally not involved with psychiatric home care (Rofman & Curran, 1995). This clinical program is significant for several reasons. First, the home-care company involved has obviously crossed the "China Wall" and successfully marketed its services to the psychiatric managed care sector. Second, the company is involved with a third-party payer, other than Medicaid or Medicare. Third, it confirms that the purchasers of behavioral health care, the M C O and H M O , are looking to organizational vendors of health care.
Not-for-Profit Home-Health Agencies As noted above, not-for-profit nursing agencies such as the VNAs are also engaged in psychiatric home care. Although their bottom-line goals differ from those of commercial home-care firms, their core mission is also home care. In addition, like the commercial firms, the VNAs are dealing primarily with medical-surgical (med/surg) patients rather than psychiatric patients. Across the country, numerousVNA affiliates are reporting psychiatric home-care initiatives. Their psychiatric home-care work remains a small portion of their revenues, and nearly all of that revenue is Medicaid- or Medicare-based. However,VNAs can be expected to become more active in psychiatric home care for many of the same reasons as commercial home-care firms, even as they suffer some of the same limitations as the commercial firms: orientation to acute conditions, modest numbers of psychiatrically trained staff, and so on.
Family Service Organizations and Psychiatric Rehabilitation Programs If the home-care companies have concentrated on med/surg services, there are other organizations providing psychiatric home care whose origins are directly rooted in community-based psychiatric care. Categorically speaking, a number of organizations have been involved in psychiatric home care for years, often under different program titles. These are the
16
PsychiatricHome Care: Clinical and Economic Dimensions
not-for-profit groups such as family service agencies and stand-alone agencies dedicated to psychiatric rehabilitationmcommunity residence agencies. Now they are beginning to appear on the radar screen of commercial managed care. By definition, family service agencies are dedicated to serving the mental health needs of their community, specifically providing support to family members, often children, as they struggle with problems of living and mental illness. Many family service organizations have also carried the stated mission of serving the seriously and persistently mentally ill (SPMI). In doing so, they have acquired the skills of clinical case managers. In many respects, these "old-line" organizations are ideal agents for psychiatric home care, and some of these family service agencies have entered into agreements with the commercial carriers to provide home care. Traditional family service agencies were established long before Medicaid was born. Initially, they survived through the generosity of a community's economic elite. By the 1970s, many not-for-profits with origins in traditional philanthropy were highly dependent on government funds, either through grants or Medicaid fees. The movement to deinstitutionalization created a number of not-for-profits whose operating budgets came exclusively from government sources from their very first days of operation. In terms of services delivered and financial support, these organizations were pure expressions of the public policy of moving psychiatric care to the community. They have also developed and refined skills that are readily transferred to psychiatric home-care services, and are now beginning to secure contracts with managed care firms to serve clients with more disabling psychiatric conditions. These not-for-profit agencies are prominent in operating group homes or halfway houses for the individual in recovery from mental illness. Group homes and apartments are excellent training grounds for psychiatric home care: the services are provided at the site, the focus of the services is consistent with the basic principles of psychiatric home care, and the resources are the same conununity resources one seeks to engage within a home-based mental health program. In recent years, such services have been extended to apartments of group-home graduates. Sometime referred to as supported housing, these programs are in many respects conventional psychiatric home-care services.
Outpatient Behavioral Health Care Organizations The past years have seen the growth of an organizational "animal" rarely seen before, created by mental health managed care: ambulatory behavioral health organizations.At one extreme, these are group practices of 5 or 10 psychiatrists who have become preferred providers for a major managed care firm.At another extreme, they are consortiums of 20 or 25 organizations that have formed a "superorganizationto perform marketing activities and manage the back-office functions like bookkeeping and liaison with MCOs.
The New Players in Psychiatric Home Care
17
Ambulatory behavioral health organizations have several advantages, similar to those of hospitals, in addressing the behavioral health care market. (Some of these integrated provider organizations--IPOsmincorporate hospitals.) Advantages include the clinical talent, the MIS systems, and the office infrastructure that relate to the managed care market. Another advantage is that they were designed to address a changing market, so they lack the rigidity of a bureaucracy developed for another time. One shortcoming of many of these IPOs, especially of office-based clinicians, is that the professional staff does not have recent experience working with at-risk clients. Professional office practices have not usually been a magnet for the more disabled psychiatric patients. Consequently, these organizations may require "retooling" to become comfortable in addressing the needs of this group.
Integrated Behavioral Health Organizations There are several examples of behavioral health organizations that have anticipated the shift from inpatient to ambulatory care. One of which is the Choate organization. In chapter 9 of this book, Brenner and Koman recount experiences in home-based and managed care within the Choate organization. Choate owned and operated a fully integrated behavioral care system in the Boston area and managed clinical operations in other parts of New England. The Boston operation began as a free-standing inpatient unit.As the managed care wave rolled over Massachusetts, the organization was smart enough and agile enough to develop a full range of services to address the at-risk patient: halfway houses, day hospital, continuing day treatment, intensive outpatient models, and a modest home-care program. In a number of respects, integrated behavioral organizations are ideally equipped to offer in-home psychiatric care.They have the clinical expertise available through a staff accustomed to working with patients in ambulatory settings. They have service models that involve engaging patients in intensive treatment in day programs and residential settings. And those integrated behavioral organizations that are still around to negotiate the current wave of economic transformations in psychiatry likely have good working relationships with the major payers in their region.
THE FUTURE
OF BEHAVIORAL
HEALTH
CARE
Each of these potential service organizations differs in its economic origins, the population(s) served, expressed mission, and the"fit" with the commercial managed care community.All of these variables will influence the nature of behavioral health care and determine which organizations survive the next spate of consolidations in behavioral health. In fact, one can look at these organizations as spear carriers, offering two different models of care for patients with enduring psychiatric conditions.
18
PsychiatricHome Care: Clinical and Economic Dimensions
The first model is advocated by the large managed care firms working feverishly to establish standard protocols to be applied in each region where they have a significant subscriber base. Ideally, these protocols identify target symptoms, well-defined interventions paired to each symptom profile, and some definition of length of service or a new-phase equivalent. When offered a choice, these MCOs will elect to work with a provider whose approach to treatment is similarly rooted in a conventional "medical model"--home-care agencies, hospitals, and physician practices. The second model is championed by the not-for-profits, halfway house programs, and clinical case management programs sponsored by the public sector. In many respects, these programs have been at odds with the medical model's welldefined outcome measures.They bear more resemblance to public health programs, since their mission is described in terms of serving the community rather than individual clients. This is not to say that these programs do not do a responsible job of defining individual treatment goals; the psychiatric service plan included in Appendix B is derived from such a program. However, these programs differ from more conventional medical services in the wide flexibility of services provided and the open-ended nature of the services. Critics are often rightfully concerned that there is no effective discharge criteria for leaving these public programs. Defining recovery for a patient with schizophrenia (and other enduring psychiatric conditions) is difficult and ongoing. The models endorsed by the various organizations described in this chapter echo the voices in this debate.At one extreme it is argued that effective intervention during an acute phase---intervention that returns the patient to clinical stability--signals a job well done. There are just not enough resources to sustain the patient during the 10-12-year recovery in which some of the social skills will return.We can call this the acute-care model. At the other extreme--and both of these profiles are caricatures of real-world models--psychiatric conditions are viewed as long-range illnesses with a broad range of associated disabilities. Under this umbrella, we have an obligation to provide a broad band of supports to maintain persons with psychiatric disorders in the community. Some of these supports don't square with conventional medical treatment; they may even push the envelope of conventional rehabilitation therapies. Nonetheless, so the argument goes, these extended services are consistent with state-of-the-art treatment for enduring psychiatric illness. The next months and years will witness an intersection of these competing philosophies, the organizations that champion these different approaches, and the various funding models.
REFERENCE Rofman, E. S., & Curran, 1K.E (1995). Initiating a capitatedprogram for HMO patients. General Hospital Psychiatry, 17, 278-286.
Clinical Issues in Delivering Home-Based Psychiatric Services Joel Kanter
CHAPTER SUMMARY As programs for serving persons with severe mental illnesses evolve in an era of dramatic change, home-based psychiatric services offer fresh opportunities and challenges. Several decades of clinical experience and empirical research have established that ongoing home-based psychiatric care can significantly reduce hospitalization and improve quality of life for many mentally ill patients who are unable or unwilling to participate in traditional office-based treatments. Home-based interventions also can help engage other patients in more conventional treatments or offer critical adjunctive support during relapse or other crises. Home-based psychiatric care can be costly when compared with office-based treatment. In one intensive outreach program, annual per capita costs of homebased care exceeded $9000 (Quinlaven et al., 1995). However, home-based care does offer a less expensive alternative to hospitalization.Although there is evidence that home-based care can yield cost savings with selected patients, there is no empirical data that can offer practitioners, programs, and insurers explicit guidance on which patients can benefit from home-based treatment at specific points in their lives. Because organizations in both the public and private sectors need to be aware of the fiscal considerations of all psychiatric services, it is necessary to develop Psychiatric Home Care: Clinical and Economic Dimensions
Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
19
20
Psychiatric Home Care: Clinical and Economic Dimensions
guidelines for making informed clinical judgments on the utilization of homebased care. This chapter is an initial attempt to develop such guidelines based on clinical experience and the limited available research. In doing so, it is essential to move beyond a simplistic reliance on traditional practice methods or ideological declarations of professional dedication. Home-based psychiatric treatment must be viewed as a valuable treatment option that can be used in a variety of intervention patterns for selected patients. After providing a brief historical background of home-based psychiatric services, this chapter outlines the comparative advantages of office-based and home-based treatment, discusses specific indications and contraindications for home-based services, and identifies common intervention patterns in home-based care. It also discusses issues for delivering home-based psychiatric services in a managed care context.
HISTORICAL BACKGROUND PSYCHIATRIC SERVICES
OF H O M E - B A S E D
Although the practice of psychiatry was largely hospital based until the 20th century, treatment in the home was not uncommon 100 years ago. Breuer and Freud's (1982) classic, Studies in Hysteria, describes the home-based care of Anna O. and other patients with conversion hysteria, treatment innovations that provided some of the cornerstones of Freud's psychoanalytic method. However, conventional psychoanalytic techniques required that patients be treated in an office setting, physically separated from their social network. Although institutional care was the norm for severely disturbed patients until the 1950s, some patients were discharged from public and private hospitals and were "followed" at home by psychiatric social workers (French, 1940; Stephens, 1954). As the use of neuroleptic medications dramatically shifted the locus of treatment from the hospital to the community, psychiatric care largely shifted to clinic-based services. However, some programs experimented with professionals providing services to deinstitutionalized patients in their homes and communities (Chittuck et al., 1961; Pasmaniack, Scarpitti, & Dinitz, 1967). The successes of the Program for Assertive Community Treatment (PACT) in the 1970s by Leonard Stein and Mary Ann Test (1980) offered new impetus for providing home-based psychiatric services. Stein and Test's well-designed empirical trial provided convincing evidence that assertive in-home care by an interdisciplinary treatment team could dramatically reduce the utilization of hospitalization while improving quality of life. The PACT model has been replicated and studied in many communities in the United States and other countries; it has also been applied to various special populations, including the homeless mentally ill, veterans, and the dually diagnosed (Stein & Santos, 1998; Suber, 1994).
Clinical Issues in Delivering Home-Based Psychiatric Services
21
However, the aggressive outreach approach of the PACT model requires costly low caseloads (approximately 10:1) that significantly limit the number of patients served. Because some studies have indicated that patients in the PACT model lose all treatment gains when intensive outreach is discontinued (Stein & Test, 1980), many adherents argue that these patients should receive this treatment approach indefinitely (McGrew & Bond, 1995). As yet, there is little data on how and when patients can be transitioned from the PACT model to less expensive, more conventional, office-based treatments (McRae, Higgins, Sherman, & Lycan, 1990; Mueser et al., 1998). There are a smaller number of examples in the literature of less expensive approaches to home-based psychiatric care. Falloon, Boyd, and McGill (1984) describe a program of in-home family psychoeducation for patients with schizophrenia. Their empirical study of this intervention reports a significant impact of this treatment on relapse: only 11% of the patients in the experimental group (as compared to 50% of controls) were rehospitalized during the first 9 months of treatment.This approach complements other office-based approaches to family psychoeducation, providing powerful evidence that engaging the social network dramatically enhances the outcome of patients with schizophrenia. Alternatively, others have demonstrated that mobile crisis treatment teams can provide time-limited, in-home services to patients with acute psychiatric emergencies (Geller, Fisher, & McDermeit, 1995); however, as this is only one component of a community support system, it is difficult to assess the impact of such interventions on relapse and rehospitalization. In-home services have become a standard component in new models of community residential programs, most notably supervised apartment programs and supported housing (Ridgeway & Zipple, 1990). Although residents most often participate in office- or facility-based interventionsmincluding medications, day support, and psychotherapy--counselors also visit these homes regularly to monitor psychiatric status, teach independent living skills, promote cooperation among roommates, and provide crisis intervention. Finally, home-based interventions can be conducted within the context of a clinical case management program that provides in-home treatment on an asneeded basis. In most cases, these interventions are not ongoing; rather, they are specifically targeted to engage reluctant patients in treatment or intervene in acute crises (Kanter, 1995, 1996a; Zellmer, Maurer, & Kanter, 1985).
A D V A N T A G E S OF O F F I C E - B A S E D SERVICES Although the focus of this volume is on home-based services, understanding the clinical utility of providing psychiatric services in an office-based setting provides a context for understanding the specific advantages of home-based services.Although
22
Psychiatric Home Care: Clinical and Economic Dimensions
some of these advantages may appear self-evident, it is important to outline each of these benefits explicitly.
Economy Office-based services eliminate the cost of professional travel time, allowing the professional to spend more time in direct patient contact.
Privacy Office-based services enable clients and professionals to meet in private, facilitating expression of personal matters. This privacy helps establish professional boundaries in the therapeutic relationship.
Control In office-based treatment, the client more easily controls the intensity of treatment, factors determined by both duration and frequency of sessions.
Comfort and Security In an office setting, professionals can offer their clients and themselves a reliable level of comfort and physical security. This can reduce the anxiety level of all parties.
"Holding Environment" The office environment offers many patients in both individual and family therapy a sense of psychic security that can support ego controls.
Responsibility By requiring clients to transport themselves to treatment, office-based services encourage patients to assume responsibility for their own treatment and recovery.
Structure and Socialization For many mentally ill indivduals with minimal activities, the visit to a clinic or a professional can provide useful structure for much of a day. Such visits can offer
Clinical Issues in Delivering Home-Based Psychiatric Services
23
isolated patients a variety of opportunities for socialization, including seeking a ride, using public transportation, stopping for fast food on the way to the office, meeting others in the waiting room, or conversing with a receptionist.
Improvement o f Social Skills In our society, making and keeping appointments is an important social skill. Developing reliability in this area can assist in establishing friendships or finding and maintaining employment.
ADVANTAGES
OF HOME-BASED
SERVICES
In contrast with office-based treatment, meeting clients in their home or community offers very different advantages.
In Vivo Assessment Meeting clients in their homes or neighborhoods enables professionals to assess their functioning in their everyday environment. It also enables direct observation of significant others and living conditions. For example, witnessing a chaotic home environment may help a professional better understand noncompliance with a medication regimen.
E n g a g e m e n t o f Social Network Meeting a patient at home may facilitate engagement with significant others, who may be unable or unwilling to participate in an office-based treatment.
Treatment o f " H o m e - B o u n d " Patients Obviously, home-based treatment more effectively serves those who have significant transportation difficulties.This may result from physical disabilities, geographic isolation, lack of car or public transportation, or the unwillingness of network members to provide transportation. Also, psychiatric disorders such as paranoia, agoraphobia, or severe depression may greatly impair mobility for some individuals.
E n g a g e m e n t o f Reluctant Patients W h e n individuals do not acknowledge their difficulties or devalue professional intervention, there is little motivation to travel to a clinic or office.Visiting an office
24
Psychiatric Home Care: Clinical and Economic Dimensions
requires an acceptance of a "patient role," a damaging narcissistic wound (Sheppard, 1995). Beginning treatment in the home may ameliorate these difficulties and allow patients to participate in office-based treatment at a later time.
Professional and Social Responsibility W h e n patients refuse to accept responsibility for their own treatment, our society sometimes accepts responsibility for medical interventions. This can be done through legal means such as involuntary inpatient or outpatient commitment, or through more persuasive methods such as in-home prenatal care. In such instances, societal interests in the patient's well-being and public safety lead to more assertive intervention strategies. In-home psychiatric care can be a less restrictive (and less costly) alternative to hospitalization or institutional placement.
INDICATIONS
FOR HOME-BASED
SERVICES
Appreciating the respective advantages of both office- and home-based services, w h e n is it indicated to work with patients in their homes? In theory, the choice between office and home-based service could be evaluated in each situation. H o w ever, for reasons of convention and cost, office-based treatment has become a professional default; when office-based treatment is inadequate, indications for home-based services can be explored. These situations can be grouped into three broad areas: conducting in vivo assessments, engaging reluctant patients in treatment, and conducting ongoing home-based treatment.
In Vivo Assessment Visiting patients in their homes offers clinicians valuable information that can be difficult to obtain in an office setting. First, when clients cannot or will not participate in office-based treatment, clinicians can assess the difficulties in traveling to an office or clinic for treatment.Although concrete reasons such as lack of transportation or physical disability are offered for this difficulty, the obstacles to treatment in an office setting often prove more subtle. For example, although inadequate bus service may be a reality, clinicians should also determine why a patient cannot secure a ride to a professional office.Are there real deficiencies in the social network, or does the person have difficulties c o m m u nicating his or her needs for assistance to network members? Is the patient isolated and without family and friends to offer help and support? Alternatively, many severely disturbed patients do not acknowledge any problem or illness, or they may have had negative experiences with mental health clinicians that have left them skeptical of professional assistance. Finally, some relatives, significant others, or
Clinical Issues in Delivering Home-Based Psychiatric Services
25
friends may not understand the patient's disorder, or they may be skeptical of or hostile toward professional intervention--attitudes that directly affect their willingness to provide transportation. In other situations, the illnesses of severely disturbed patients interfere with leaving home to seek assistance.This is especially common with agoraphobia, paranoia, severe depression, and schizoid disorders. A single home visit can sometimes provide clinicians with enough diagnostic information to develop an effective plan for engaging patients in office-based treatment. A second reason for conducting an assessment in the home involves psychiatric crises that raise questions of suicide, violence, neglect, or abuse.When a relapsing patient with a history ofsuicidality or violence discontinues visits to a professional ofrice, a home visit may be essential to assess whether medications should be changed or monitored more closely, whether increased social support should be mobilized, and whether hospitalization, either voluntary or involuntary, should be initiated. A third reason for assessing patients in their homes is to understand more fully the environmental context of psychiatric disorders. For example, difficulties in medication compliance can be better appreciated when a chaotic home environment is directly observed; in such situations, injectible medications may be recommended. A visiting clinician can note the abusive behavior of an uncooperative relative, problems in nutrition, or dangerous elements in a patient's neighborhood. In addition, a home visit may reveal strengths and resources that are not observable in an office setting: a clinician might observe a patient's engagement with a beloved pet, evidence of hobbies or recreational interests, or meet a concerned neighbor who can provide social support. These observations can enhance the engagement process of a reluctant patient or provide useful information that can facilitate ongoing office-based treatment. In the following vignette from a case report published elsewhere (Kanter, 1995, pp. 23-26), several home visits accomplished all of these objectives: Terri, a 24-year-old college graduate, had remained isolated and homebound for more than 18 months after losing her job and apartment. She refused to participate in any sort of psychiatric treatment.After consulting with her parents in the office, the social worker visited Terri at her parents' suburban home for about 20 minutes. Her flat affect and guarded m a n n e r - - i n a sterile bedroom that exhibited no interests or activities--suggested a diagnosis of schizophrenia, but her discomfort with the visit and unwillingness to engage in conversation suggested that further visits at this time would not be useful. The social worker maintained telephone contact with Terri's parents over the next few months, helping them monitor signs of improvement or deterioration that would provide opportunities for therapeutic intervention.When Terri decompensated 2 months later, screaming obscenities and removing her clothes, the parents called the social
26
Psychiatric Home Care: Clinical and Economic Dimensions worker, who visited the home but made no attempt to go upstairs. Listening to Terri's hostile verbalizations, the social worker was able to assist the parents in obtaining a commitment order.Terri was hospitalized at a state facility; neuroleptic medications and office-based family sessions were begun. With no further interventions in the home, Terri eventually resumed employment and moved into her own apartment.
Engaging Reluctant Patients After an assessment has been completed, clinicians can begin to engage reluctant patients in a treatment process. In many situations, clinicians can help patients acknowledge at least one problem that might benefit from professional attention--for example, insomnia, difficulty concentrating, depression, or family conflicts. In many cases, the rapport established between clinician and client in one or two visits can assist in dissolving the patient's distrust of mental health professionals, allowing treatment to begin in an office setting. However, if rapport is established without enabling the patient to leave the house, psychiatric medications may be initiated to address the underlying disorders. In situations where rapport may not be established quickly, the significant others who initiated the referral may use the home visit to express their deep concern. The following vignette is an unusual example of this process: Laura, a 30-year-old single woman, had lived with her divorced mother for many years. She had had minimal social contact and had not worked in more than 5 years. Her mother's account of Laura's sometimes bizarre, yet stable behavior suggested a schizotypal personality disorder.When the social worker visited the home and knocked on Laura's bedroom door, he immediately heard furniture being moved against the door. He introduced himself through the door, but received no verbal response. In several minutes, he looked out a nearby window and observed the patient running away across the backyard; she had apparently climbed out of her bedroom window. He left her a note expressing his disappointment that they were not able to meet and his intention to return the next week at the same time. He then consulted briefly with the patient's mother. W h e n he returned the next week, the same events transpired, only Laura "escaped" more quickly. Her mother reported that Laura had remained outside the home all day. Another note was left, expressing an intent to return the following week. O n the third visit, Laura left her home an hour before the social worker arrived. Her mother reported that she had also gone out on other days. The social worker continued to visit for the next 4 weeks; each time Laura would leave home for the whole day. She had also begun to leave the house more frequently at
Clinical Issues in Delivering Home-Based Psychiatric Services
27
other times. Several weeks later, Laura moved in with a neighbor and obtained a .job at a local bookstore. Follow-up revealed that her employment continued, although treatment was never initiated. If the patient does not acknowledge a need for help, the visiting professional should meet with concerned relatives, friends, or other caregivers, especially when they live in the patient's home or have initiated a referral (Kanter, 1996b). In some situations, relatives will not bring a disturbed person to a professional office because they have been told that treatment cannot succeed unless initiated by the patient. Brief consultation can help them understand that successful treatment is often initiated by the persuasion of a significant other (Kanter, 1985, 1996b). Similarly, clinicians can strategize with relatives and other caregivers about how they can persuade the patient to acquiesce to, if not actively participate in, treatment. For example, some patients will agree to come to a professional's office to "explore family tensions." Once reassured by the clinician's manner and interest, they may acknowledge severe personal difficulties or a psychiatric disorder.
Ongoing Home-Based Psychiatric Care In a minority of situations requiring home-based services, ongoing treatment in the home is indicated. These include the following situations:
Difficulty with Transportation to Clinic or Office Although most patients can transport themselves or find transportation to psychiatric services, there is a small minority who have genuine problems in using officebased services on a regular basis.
Denial of Illness by the Patient or Significant Others W h e n severe difficulties are not acknowledged, treatment may be prolonged.
Unwillingness to Accept the "Patient Role" For some patients, coming to a professional office implies an intolerable acceptance of personal inadequacy. These patients may be most amenable to in-home interventions over an extended period and can significantly improve without acknowledging a psychiatric disorder (Sheppard, 1995). In some cases, a professionally supervised volunteer, home health aide, or paraprofessional case aide can provide essential support at lower cost.
Ongoing Devaluation of Psychiatric Treatment or Interpersonal Support Although they may benefit from psychiatric care, some patients will not allow themselves to acknowledge its value. If transportation to a professional office requires much effort or expense, they may not be willing to assume this burden.
28
PsychiatricHome Care: Clinical and Economic Dimensions
Lack of Support for Treatment by Social Network When the network of a geographically isolated client does not appreciate the value of psychiatric intervention, they may be unwilling to provide transportation to an office or clinic. Family psychoeducation and consultation in the home can help address these difficulties, which sometimes have a cultural origin. Home-based interventions may be especially important in treating children at risk with severely disturbed parents who have difficulty collaborating with conventional treatment. In his article "A Case Managed at Home,"Winnicott (1975) discussed the care of a school-phobic child through weekly half-hour home visits split between a brief consultation with the mother and a brief play therapy intervention with the child. Similarly, Fraiberg (1980) discussed in-home interventions with abused and neglected infants; the home environment allowed the clinician to directly observe and influence parenting behaviors.
Need for Ongoing Involvement with Family or Significant Others Falloon et al. (1984) outlined a model of behavioral family treatment for schizophrenia, conducted through a series of home visits that decreased from weeny to monthly over time. Because the visits were held in the home, they had more success involving all significant relatives, many from low-income families, on an ongoing basis. However, others have found that many families will participate in a similar intervention program in a clinic setting (Anderson, P, eiss, & Hogarty, 1986). Since these interventions reduce the relapse rate of medicated schizophrenic patients from 40 to 10% annually (Dixon & Lehman, 1995), home-based intervention may be particularly cost-effective for families that have difficulty participating in office-based treatment.
Refractory Response to Office-Based Treatment in Some Psychiatric Disorders As indicated earlier, disorders like paranoia, agoraphobia, and severe depression may directly interfere with the patient's participation in office-based treatment. Home visits may help build trust with the paranoid patient and ameliorate the despair of the depressed patient. In agoraphobic patients, behavioral strategies can be initiated that can lead to a dramatic improvement in this disorder in several months (Hecker & Thorpe, 1991).
Long History of Treatment Noncompliance A final indicator for home-based services is a history of treatment noncompliance. Many of the PACT-model programs target such recidivist patients with considerable success. In the case of one severely depressed and diabetic man with learning disabilities who was repeatedly hospitalized on medical wards for diabetic emergencies, a sustained home-based approach helped him control his diabetes and find
Clinical Issues in Delivering Home-Based Psychiatric Services
29
an appropriately supportive living situation (Kanter & Silva, 1996). This intervention dramatically reduced overall health care costs for this patient.
CONTRAINDICATIONS FOR HOME-BASED SERVICES Although efficacious in many situations, home-based psychiatric care also may present serious difficulties for both patients and providers in specific situations.
Physical Risk to Clinicians Providers can be at risk for physical or even sexual assault from patients or other individuals prone to violence. If they are aware of such a violent background, clinicians should visit the home with a colleague. In one urban program that works with high-risk homeless persons, workers are accompanied by security personnel. All clinicians making home visits should have supervisory support to protect themselves in any situation that elicits fear of violence. If possible, another worker or team of workers should be assigned. In some situations, it is safer to meet clients in a public place near their residence, such as a park or fast food restaurant.
Patient Unavailability W h e n patients are not at home for scheduled visits, clinicians should leave behind a note and consider consultation with concerned caregivers.When absences are repeated, intervention strategies should be evaluated. In some situations, it is best to wait for the patient to initiate treatment. An aggressive outreach approach can frighten distrustful patients, who may prefer the sense of control they have in an office-based treatment. Failed outreach efforts can sometimes sow the seeds of future rapport as patients begin to appreciate the sincerity of the clinician's concern.When a future crisis develops, patients will be more receptive to professional intervention, especially by the same worker.A case study by Mays (1995) offers an excellent example of this process.
Intense Transference Reactions H o m e visits can elicit powerful transference reactions. Paranoid clients may feel controlled or invaded, and sometimes will respond with hostility or even violence. With such clients, the clinician should be careful to call ahead and assess the patient's receptivity to a visit, communicating respect for their personal boundaries.
30
PsychiatricHome Care: Clinical and Economic Dimensions
Alternatively, other patients with dependent characteristics may become further regressed if visited at home.When obtaining interpersonal support does not require any effort, the patient may demand increasing involvement from the visiting clinician, sometimes controlling the clinician with threats of suicide or self-neglect. Such patterns, common with borderline personality disorders,require careful intervention. Finally, erotic transferences can more easily develop in home-based interventions. Clinicians must be sensitive to real or imagined boundary violations (Gutheil & Gabard, 1993).They should be especially wary of interviewing clients in a bedroom, which sometimes is the only place in the home offering privacy.When a patient's history reveals a background of sexual abuse or assault, special care should be taken to assign workers less likely to elicit transferential responses. As in situations with potential for violence, clinicians should consider meeting with such patients in a public place or in the presence of a concerned relative or colleague. The following vignette is an example of these difficulties: A young male clinician visited the apartment of an isolated, homebound schizophrenic woman. Arriving at the small two-bedroom apartment, he found the patient and her parents in the living room. Because it seemed awkward to talk with the patient in the parents' presence, the worker asked for some privacy, and the parents retreated to their bedroom. After a disjointed conversation marked by suggestive glances, the worker returned the following week to find the client wearing elaborate makeup and a revealing sweater. Recognizing the problem, he consulted with his supervisor, who insisted that the visits be immediately discontinued. Before another worker could be assigned, the client relapsed and was hospitalized. The clinician continued his intervention in the public environment of the hospital; after discharge, the patient was willing to travel to the office for ongoing treatment.
Environmental Chaos In some situations, the home or residence may be too crowded or chaotic for any useful dialogue to occur. This atmosphere does not allow clinicians to conduct any structured interventions, such as the aforementioned behavioral family treatment (Falloon et al., 1984). However, brief visits may help in assessing the patient's environment or in establishing rapport with the patient or social network. Evidence o f Manipulativeness Perhaps related to issues of dependency, some patients derive an ongoing sense of control by acting more helpless than they really are. If clinicians learn that al-
Clinical Issues in Delivering Home-Based Psychiatric Services
31
legedly " h o m e - b o u n d " patients freely travel to social engagements or even to other professional services, the appropriateness of home-based services should be reevaluated.
INTERVENTION PATTERNS IN HOME-BASED SERVICES Home-based psychiatric services manifest five c o m m o n intervention patterns: 9 assessment and crisis intervention only 9 short-term assessment and engagement as a transition to office-based treatment 9 ongoing low-intensity outreach to reluctant clients 9 ongoing treatment titrated to therapeutic need 9 ongoing support and monitoring of stabilized clients Each of these patterns has utility in specific situations. Before initiating h o m e based services, clinicians should identify which of these intervention patterns they plan to use, although, over time, patient needs may dictate a shift in approach.
Assessment and Crisis Intervention W h e n new patients present problems with becoming involved in an office-based treatment, a time-limited period of in-home assessment can clarify diagnostic issues, identify treatment options, and recognize and address obstacles to office-based services.To minimize patient expectancies for ongoing home-based services, the clinician should explicitly stress that these initial visits focus on assessment. W h e n new or ongoing office-based clients present in acute crisis, the need for hospitalization must be quickly assessed and appropriate action taken. If possible, a home-based psychiatric evaluation (or telephone consultation with a psychiatrist known to the patient) can facilitate prompt initiation of, or adjustments to, medication regimen. For patients engaged in ongoing office-based care, crisis intervention is best conducted by the involved clinicians and treatment team that know and have established a rapport with the patient and significant others. Their first-hand observation of the crisis can greatly assist in future treatment planning. In contrast, a new team of providers has to spend considerable time gathering information and developing support.
Short-Term Assessment and Engagement In some situations, acute psychiatric disorders or distrust of mental health professionals require a brief series of home visits. Once the acute disorder is ameliorated
32
Psychiatric Home Care: Clinical and Economic Dimensions
or some rapport established, patients may transfer to an office-based service, sometimes after only one or two visits. This transition is easiest when the visiting clinician can continue treatment in an office setting. The following example illustrates how this process unfolded over several months: The spouse ofMrs.B, a 65-year-old woman, contacted the case management service for outreach on referral by a private physician who was concerned about her psychiatric condition. H o m e b o u n d and largely bedridden for more than 2 years, Mrs. B refused to cooperate with any medical treatment, was often mute, and had been losing weight. Initially, a social worker visited the home to meet Mr. B and interview Mrs. B. She lay in bed, affectless, answering some questions in monosyllables and ignoring others. It was impossible to determine if she was suffering from a paranoid condition, severe depression, or an undiagnosed medical condition. O n the next visit, the social worker was joined by a team psychiatrist; although concerned, he was unwilling to initiate medication trials without a complete physical examination by Mrs. B's internist. As Mr. B felt helpless to transport his wife to the physician, the social worker convened an in-home family meeting attended by four adult children. More assertive than their passive father, the children concluded it was essential that their mother be transported to her internist.They agreed to make an appointment and physically carry their mother to the doctor's office.At the next home-based family meeting, the adult children reported that they had carried their mother to the car in her bathrobe; however, when they arrived at the internist's ofrice, she walked in on her own. Another appointment was scheduled for an interview with the psychiatrist at the clinic. This time Mrs. B went voluntarily with her husband, and they stopped at a restaurant on the way home. The office visits with the psychiatrist continued while the social worker convened monthly family meetings in the home for the next 4 months to discuss Mrs. B's increasing participation in family life. Once an adequate level of function was achieved, home visits were discontinued and family consultation continued intermittently by phone and in the office.
Ongoing Low-Intensity Outreach For some reluctant patients, a low-intensity pattern of home visits over an extended period may be the best strategy for promoting collaboration and recovery. With many paranoid individuals or others who use denial as an essential defense, clinicians are often most successful when visiting every 2 to 8 weeks. Brief visits of less than
Clinical Issues in Delivering Home-Based Psychiatric Services
33
one-half hour may be as or more effective than longer ones.These low-intensity approaches allow the patients a sense of control. Indeed, patients often come to value such professional support and eventually acknowledge their personal difficulties.
Ongoing Home-Based Treatment Active, ongoing treatment is necessary only in a minority of situations where homebased psychiatric care is indicated. This treatment may include individual or family psychotherapy, family psychoeducation, parent-child psychotherapy (Fraiberg, 1980), clinical case management (Kanter, 1989, 1996a), and ongoing psychopharmacology.The intensity of ongoing treatment should be based on therapeutic need. For example, in Falloon et al.'s (1984) model of family intervention in schizophrenia, clinicians visit weekly for 3 months, biweekly for another 6 months, then monthly for the next 15 months.When crises occur, extra visits are added.
Ongoing Support and Monitoring When individuals with severe psychiatric disorders are stabilized with home-based interventions, visits every 1 to 4 months on an ongoing basis can help provide support, assess early indicators of relapse (such as a deterioration in housekeeping), and maintain ties to significant others. These visits can be useful even if the patient is regularly involved in office-based psychopharmacology. Stressors in the home situation can be more easily identified and addressed. In addition, relatives and other caregivers are often more willing to discuss subtle positive and negative changes in the patient's functioning.
H O M E - B A S E D P S Y C H I A T R I C SERVICES IN A MANAGED
CARE
CONTEXT
The evolving changes in our health care system provide new opportunities for creative interventions.As insurers attempt to reduce hospital costs of persons with severe psychiatric disorders, it is becoming evident that there is a subgroup of patients who do not respond well to traditional office-based treatments or to the day treatment and intensive outpatient programs that have provided an alternative to hospitalization. For such patients, home-based service may offer a cost-effective alternative to hospitalization. However, home-based psychiatric services present new challenges for insurers, HMOs, provider groups, and public mental health systems. Recognizing that homebased services are more costly than traditional office-based services, protocols must
34
Psychiatric Home Care: Clinical and Economic Dimensions
be developed to identify patients who would most benefit from home-based interventions.This clinical decision making involves many considerations. In general, all home-based psychiatric care should begin with an assessment of the patient's disorder, social supports, and obstacles to office-based treatment.After this assessment is complete, a decision on the appropriateness of ongoing homebased services can be determined. In many instances, a major consideration in evaluating the need for home-based care will be its cost effectiveness.With some patients who are frequent recidivists, the cost savings of home-based services over inpatient services may become evident within months. However, with others who manage to avoid hospitalization, homebased services may temporarily increase costs but over time may be a wise investment in the patient's eventual stabilization and even recovery.
Staffing Patterns Home-based psychiatric care can be provided as one component of an office-based treatment team or by teams or programs that specialize solely in this care. The former has the advantage of providing continuity of care; the same clinicians can smoothly and quickly transition patients from home to office and back, according to their level of need. If this continuity in the therapeutic relationship is maintained, treatment intensity can be dramatically reduced with minimal therapeutic effects (MctLae, Higgins, Sherman, & Lycan, 1990). However, when patients are transitioned from an assertive outreach PACT-model program to a totally new officebased team, treatment gains are often quickly lost (Stein & Test, 1980). All clinicians working with severely disturbed patients should be expected and encouraged to make home visits on an as-needed basis as part of their therapeutic repertoire. For clinicians in private practice, insurers should consider increasing reimbursement for preauthorized home-based care; this can be reviewed through the same care management procedures used for other intensive psychiatric treatments (such as hospitalization, day treatment, and intensive outpatient programs). For select high-risk patients, a specialized psychiatric home-based service can be most appropriate, especially when ongoing home-based care is indicated. Such a service, involving either individual clinicians or multidisciplinary teams, can develop specialized skills for intervening in particularly difficult situations. Small staff teams are especially indicated for acutely disturbed individuals who do not have a therapeutic relationship with mental health professionals. However, these "mobile crisis teams" are very costly. Two staff members are usually detailed to each crisis, and 4 man-hours can be used easily for even a minimal crisis. In contrast, an office-based clinician who has a relationship with the patient and network and is familiar with the patient's history and resources may successfully intervene with one-fourth the time and effort.
Clinical Issues in Delivering Home-Based Psychiatric Services
35
Facilitating Transitions between H o m e - and O f f i c e - B a s e d Care One unresolved problem in delivering home-based psychiatric care involves the clinical management of transitioning high-risk clients between office-based and home-based treatment programs.As mentioned earlier, the difficulty with such transitions is one reason why many experts familiar with the PACT model have advocated that patients be permanently maintained in this type of intensive treatment (McGrew & Bond, 1995). Sheehan's (1982, 1995) eloquent account of"Sylvia Frumkin" dramatically illustrates the tragedies that can occur when patients are exposed to repeated transitions in their treatment teams and programs. In addition to the impact of disrupted therapeutic relationships, critical knowledge about the patient's illness, resources, and responses to various interventions is lost each time the treatment team is changed. In some situations, relapse and medical crisis can ensue when critical information about medication side effects, drug abuse, or health problems is not transmitted. To date, managed care programs have demonstrated the greatest success in addressing acute medical difficulties; developing systems of care that provide treatment continuity for patients with chronic psychiatric or medical disorders is an important challenge for the next decade. From a clinical standpoint, if care systems are not developed that allow for the seamless titration of treatment intensity with the same clinicians, then prolonged periods of overlapping care need to be arranged when transitioning vulnerable psychiatric patients between treatment services. For instance, home-based clinicians might accompany a transitioning patient to several appointments with new officebased professionals. Over a period of 2 to 12 months, home-based providers can gradually reduce their level of contact, while office-based clinicians increase their involvement. During this process, collaboration between the providers is essential. Both sides need to be aware of the patient's sense of loss as he or she is weaned from a nurturing professional, and regressive attempts to maintain a tie with the homebased clinician should be expected.
CONCLUSION Home-based psychiatric services are an important element in the treatment of many patients with severe psychiatric disorders. Although a small number of patients may need home care on an ongoing basis, a much larger group can benefit from short-term home-based treatment for the purpose of assessment, therapeutic collaboration, or crisis intervention to prevent hospitalization. Although it can be more costly initially than office-based interventions, such short-term in-home interventions can significantly increase treatment collaboration and reduce the need for hospitalization. Similarly, with select high-risk patients, ongoing home-based
36
Psychiatric H o m e Care: Clinical and E c o n o m i c Dimensions
interventions can dramatically reduce hospital costs while improving patient functioning and quality of life.
REFERENCES Anderson, C. M., Reiss, D. J., & Hogarty, G. E. (1986). Schizophrenia and the fatuity. NewYork: Guilford Press. Breuer, J., & Freud, S. (1982). Studies in hysteria. NewYork: Basic Books. Chittuck, 1K. A., Brooks, G. W., Irons, E S. et al. (1961). The Vermont Story. Burlington,VT: Queen City Printers. Dixon, L. B., &Lehman, A. E (1995). Family interventions for schizophrenia. Schizophrenia Bulletin, 21, 630-643. Falloon, I., Boyd, J., & McGill, C. (1984). Family care of schizophrenia. NewYork: Guilford Press. Fraiberg, S. (Ed.). (1980). Clinical studies in infant mental health. NewYork: Basic Books. French, L. M. (1940). Psychiatric social work. NewYork: The Commonwealth Fund. Geller, J. L., Fischer, W. H., & McDermeit, M. (1995).A national survey of mobile crisis services and their evaluation. Psychiatric Services, 46, 893-897. Gutheil, T. G., & Gabard, G. O. (1993).The concept of boundaries in clinical practice: Theoretical and risk-management dimensions. American Journal of Psychiatry, 150, 188-196. Hecker, J. E., & Thorpe, G. E. (1991). Agoraphobia and panic:A guide to psychological treatment. Boston: A1lyn & Bacon. Kanter, J. (1985). Consulting with families of the chronic mentally ill. In J. Kanter (Ed.), New directionsfor mental health services,Vol. 25. San Francisco:Jossey-Bass. Kanter, J. (1989). Clinical case management: Definition, principals, components. Hospital and Community Psychiatry, 40, 361-368. Kanter, J. (Ed.). (1995). Clinical studies in case management. New Directionsfor Mental Health Services,Vol. 65. San Francisco: Jossey-Bass. Kanter, J. (1996a). Case management with longterm patients: A comprehensive approach. In S. Soreff (Ed.), Handbook for the treatment of the seriously mentally ill. Seattle, WA: Hogrefe & Huber. Kanter, J. (1996b). Engaging significant others: The Tom Sawyer approach to case management. Psychiatric Services, 47, 799-801. Kanter, J., & Silva, M. (1996). Case management and managed care: Investing in recovery. Psychiatric Services, 47, 699-701. Mays, D. (1995). Steven: Testing the limits of assertive community treatment. In J. Kanter (Ed.), New Directionsfor Mental Health Services,Vol. 65. San Francisco:Jossey-Bass. McGrew, J. H., & Bond, G. R. (1995). Critical ingredients of assertive community treatment: Judgment of the experts.Journal of Mental Health Administration, 22, 113-125. McRae, J., Higgins, M., Sherman, B., & Lycan, C. (1990).What happens to patients after five years of intensive case management stops? Hospital and Community Psychiatry, 41, 175-179. Mueser, K. T., Bond, G. R., et al. (1998). Models of community care for severe mental illness: A review of research on case management. Schizophrenia Bulletin, 24 (1), 37-74. Pasmaniack, B., Scarpitti, F., & Dinitz, S. (1967). Schizophrenics in the community:An experimental study in the prevention of hospitalization. NewYork: Appleton-Century-Crofts. Quinlaven, 1K.,Hough, R., Crowell,A. et al. (1995). Service utilization and costs of care for severely mentally ill clients in an intensive case management program. Psychiatric Services, 46, 365-371. Ridgeway, P., & Zipple, A. M. (1990).The paradigm shift in residential services: From the linear continuum to supported housing approaches. Psychosocial Rehabilitation Journal, 13 (4), 11-31. Sheehan, S. (1982). Is there no place on earthfor me. Boston: Houghton-Mifflin. Sheehan, S. (1995, February 20 & 27).The last days of Sylvia Frumkin. The New Yorker, pp. 200-211.
Clinical Issues in Delivering H o m e - B a s e d Psychiatric Services
37
Sheppard, M. L. (1995). Casework as friendship:A long-term contact with a paranoid lady. In J. Kanter (Ed.), New Directionsfor Mental Health Services,Vol. 65. San Francisco:Jossey-Bass. Stein, L. I., & Santos, A. B. (1998). Assertive community treatment of persons with severe mental illness. New York:W. W. Norton. Stein, L. I., & Test, M. A. (1980). An alternative to mental hospital treatment: I. Conceptual model, treatment program, and clinical evaluation. Archives of General Psychiatry, 3 7, 392-397. Stephens, E. (1954). The schizophrenic in remission-diagnostic and treatment considerations.Journal of Psychiatric Social Work, 23, 57-66. Surber, R. (1994). Clinical case management.Thousand Oaks, CA: Sage. Winnicott, D. W. (1975).A case managed at home. In Through paediatrics to psychoanalysis. London: Hogarth Press. Zellmer, D., Maurer, C. L., 8: Kanter, J. S. (1985). Treating the whole elephant: Delivering comprehensive services to the chronic mentally ill. In J. Kanter (Ed.), New Directionsfor Mental Health Services, Vol. 25. San Francisco: Jossey-Bass.
This Page Intentionally Left Blank
The Goals and Principles of Psychiatric Home Care Alan Menikoff
CHAPTER
SUMMARY
On the threshold of a new century, the field of psychiatry has developed a growing inventory of drugs and effective psychosocial interventions. In short, we have clinical tools and models of care that can offer all but the most refractory conditions the possibility of symptom relief, some measure of recovery, and relapse prevention. In tandem with these clinical developments, various models of behavioral managed care in the United States have experimented with different means of financing the treatment of psychiatric conditions and instilling rationality in the application of care. These financing and utilization strategies are challenging clinicians, administrators, and legislators to devise programs of care that are cost effective and clinically efficacious. The economic imperatives of managed care, and statutory mandates such as H R 3666, encourage--almost dictate--that alternative models of care be devised and employed more broadly. It is our contention that, for many patients, in-home care, applied judiciously and with focused interventions, is the treatment of choice, meeting the four goals of treatment effectively and with an efficient use of clinical resources.
Psychiatric Home Care: Clinical and Economic Dimensions
Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
39
40
PsychiatricHome Care: Clinical and Economic Dimensions
This chapter spells out the generic goals of psychiatric home care and delineates the seven principles that direct and define these services. Clinical vignettes drawn from actual experiences, as well as references to clinical literature and research, further clarify these practices.
GOALS OF TREATMENT In-home psychiatric care is concerned with the four conventional goals of treatment: stabilization, recovery, maintenance, and relapse prevention.
Stabilization
As barriers to inpatient care have been raised and inpatient stays reduced, patients often leave the hospital in acute conditions, requiring prompt, focused interventions. In this environment, the first and most pressing goal is patient safety. These transition periods are notoriously risky for suicide and "unexpected relapse." Anyone who has practiced in community settings is familiar with the fragility of patients during the transition from inpatient to outpatient status. Phenomenological studies of this high-risk period suggest that the patients are secure in the hospital because they have someone readily at hand to turn to. Once they leave the hospital, the time between professional contacts is extended into days and weeks. In the absence of outreach by the professionals--more on this later--professional contact requires initiative on the part of the patient, something they are often unable to accomplish. Furthermore, patients in longer term hospitalizations have formed a therapeutic relationship with one particular staff member, a relationship that is rarely continued into the community. In a recent British study, the risk of patient suicide during this transition period was well documented through the findings of a coroner's report:"The findings confirm that there is significant clustering of suicide soon after discharge from psychiatric care. Skilled support after discharge for high-risk patients in the community is essential" (Goldacre, Seagroatt, & Hawton, 1993, p. 283). In typical British understatement, the abstract continues with this observation:"The policy of reducing inpatient care in psychiatry has probably meant that some of the risk of suicide has shifted from the hospital to the community setting" (p. 283). Regrettably, other studies have documented that aftercare services in the United States are far thinner than desirable on even the most modest measures. One study reported in Hospital and Community Psychiatry offers the reader a thorough review of psychiatric aftercare services throughout the country. The authors make it clear that we have not yet met the challenge of providing adequate aftercare: A national survey of mental health facilities found that transitional care services for mentally ill patients leaving the hospital were uneven and disappointing. Although there
The Goals and Principles of Psychiatric Home Care
41
is widespread recognition of the need for providing transitional care services,there is also wide variability in the extent and willingness of hospitals to take responsibilityfor, and intensively implement, measures to ensure effective aftercare. . . . Although mental health providers are increasinglypressured to economize, it is important to remain aware of the need for structured, intensive, and specific transitional care interventions for all psychiatric patients. . . . To ensure adequate aftercare and case management servicesfor severely mentally ill persons, national health care reform proposals should either provide for reimbursement (in the manner of current medicaid programs) or else explicitlymandate responsibility for such servicesto state mental health authorities. (Dorwart & Hoover, 1994) At issue is h o w best to effect a smooth, effective transition to an aftercare prog r a m . T h o r o u g h inpatient units begin aftercare plans the m o m e n t the patient is admitted. W h e n psychiatric h o m e care is part of the aftercare plan, it is desirable to have the case manager see the patient on the unit, prior to discharge. In this era of shortened hospital stays, any means of bridging the high-risk inpatient-outpatient gap is desirable. This gives a "jump start" to the relationship, the most important element in the m u c h used phrase "continuity of care." It also allows for the home-care professional to begin the psychosocial assessment that will drive the treatment. O n c e the inpatient staff and the clinical case manager are satisfied that the patient no longer needs the 24-hr support of an inpatient unit, the first thought should be to m o n i t o r closely the patient's compliance with the pharmacological plan and begin the coordination of other aftercare services. This coordination of care, often so seamless on an inpatient unit, becomes an important function as soon as the patient returns h o m e and is a major activity of the i n - h o m e clinician. (The reader is directed to chapter 5 by Winifred Christ, this volume, on inpatient transitions to a home-care program.)
Recovery Defining recovery is a subject of considerable debate. For the depressed patient with vegetative signs of depression, one can easily establish objective measures of recovery. Defining recovery is more difficult in patients with schizophrenia, an illness with l o n g - t e r m disabilities that affect many areas of functioning and exhibit considerable variability in patterns of recovery. Despite these challenges, we have compelling reasons to define the goals of recovery for all types of patients. First, identifying these goals fosters the motivation that comes with the hope of recovery. Second, this process engages the patient as an active agent in the recovery process. And, finally, one defines the goals out of obligation to interested third parties: family, payers, researchers. Targets must be behaviorally defined and endorsed by the patient and professionals engaged in the treatment. O n c e the recovery goals are set, one can focus on available resources: the patient's internal resources (intelligence, sense of humor, etc.); family or network resources (economic as well as psychological); clinical
42
PsychiatricHome Care: Clinical and Economic Dimensions
resources (day hospital, home-care services); and organic community resources (volunteer jobs, community colleges, etc.). As in all treatment planning, the task of defining recovery goals begins with a psychosocial assessment.The best predictors of future performance are benchmarks derived from past behavior. For a 33-year-old patient with no work history, the standard for full recovery should not include full-time work. The high school valedictorian who had his first psychotic break during his sophomore year of college should probably have the recovery bar set somewhere above a part-time day hospital.
M a i n t e n a n c e and Prevention
Defining maintenance and its cousin, relapse prevention, is truly a challenge in this era of"medical necessity."Yet if these chronic psychiatric illnesses are viewed with the same attitude as any other lifelong medical condition, ignoring relapse prevention strategies offers the patient less than optimal care. We have the technology to minimize the deterioration that accompanies repeat acute episodes. In those clinical case management programs tailored to the disabilities of schizophrenia, inpatient hospitalization is often the yardstick of clinical effectiveness. If, when measured against control groups, hospitalizations have been reduced, the program is considered effective. It may be time to set more subtle measures of success in this arena. The clinician who can identify long-term outcome studies that speak to relapse prevention in community settings will be better equipped to secure the support of third-party payers for continued maintenance.
PRINCIPLES
OF BEHAVIORAL
HOME
CARE
A number of tasks are necessary to achieve the four treatment goals. These include educating the patient and family about the illness, helping structure the patient's days, and giving assistance with treatment compliance. These tasks are often difficult to categorize. By educating a patient about his illness, the clinician is also striving to improve compliance with the treatment plan. Putting together a checklist for the patient to mark each time medication is taken not only aids in treatment compliance but also provides some structure to daily life. By facilitating use of community-based therapy, such as a day hospital, one is also introducing social supports. In order to conceptualize these services, we have put together seven principles of psychiatric home care, adopted from the APA Practice Guidelinesfor the Treatment of Patients with BiPolar Disorder (1994): Principle Principle Principle Principle
#1: #2: #3: #4:
Establish and maintain a therapeutic alliance. Monitor clinical condition. Educate the patient and significant others. Encourage treatment compliance.
The Goals and Principles of Psychiatric Home Care
43
Principle #5: Foster structured, fulfilling daily activities. Principle #6: Enhance patient's grasp of the illness, identify new episodes early, and help patient adapt to psychosocial effects of the illness. Principle #7: Reduce the morbidity and sequelae through the use of community supports.
Principle #1: Establish and Maintain a Therapeutic Alliance Although psychiatry has developed a number of technologies that minimize the worst symptoms, help prevent relapses, and support rehabilitation, the oldest clinical interventionmthe relationshipmhas not lost its importance. Indeed, the case could be made that given the fragmented communities and disjointed health care system in the United States, the relationship may be coming into its own as a therapeutic agent.
Profile of Ms. M Ms. M., a woman in her 50s who is chronically psychotic, was referred for case management services after more than a dozen hospitalizations in 2 years.After each hospitalization she returned to her home, a two-family attached house in which she lived alone, and resumed her reclusive lifestyle. She continued the medication regimen only briefly after each episode before refusing to see the physician or participate in any therapeutic program. She was ambivalent even about seeing the psychologist assigned as her case manager, but finally agreed to meet him on the steps to her home. Ms. M was rambling and actively psychotic, only minimally focused or goal-oriented in her speech. The case manager, an experienced clinician, avoided challenging the delusions and simply listened to her complaints and grievances. By the end of this first meeting, Ms. M was willing to visit the doctor, but only if the psychologist accompanied her. She agreed to permit the psychologist to return for another visit the following week. In writing up his notes on this first session, the psychologist remarked that within that one session, Ms. M'S thinking became less cluttered with tangential thoughts and paranoid products. What was new? The relationship During an acute episode, a patient's dependency needs are often at their height; the immobilization of depression aggravates characterological wishes to be taken care of. By constructively exploiting this dynamic, the case manager can successfully "carry" the patient across this difficult threshold.
Profile of Mr. D Mr. D., a 43-year-old married father of two young children and owner of his own retail business, was briefly hospitalized for a major depressive episode. Prior to this hospitalization, Mr. D had been put on Prozac by his internist to treat increasing
44
Psychiatric Home Care: Clinical and Economic Dimensions
depressive symptoms. Initially he experienced relief from Prozac, but as the dosage was rapidly increased, he began experiencing significant side effects (irritability, severe agitation, sleeplessness, and suicidal ideation). His depression and discomfort increased to the point "where I found myself in the kitchen at 4 A.M. looking at a knife." Both Mr. D and his wife were frightened by this, and he was subsequently hospitalized. While in the hospital, Mr. D's Prozac was discontinued, and the medication side effects significantly decreased.Although still depressed, he was not started on an antidepressant while hospitalized since Mr. D and his wife were hesitant about medication, given his reaction to Prozac. In addition, he did not feel comfortable with the psychiatrist he had been referred to and did not want to continue with him. Mr. D was referred for home care by a family therapist who evaluated the patient and made the referral prior to discharge from the hospital.The immediate goals including finding a psychiatrist Mr. D. could feel comfortable with, helping him structure his time (as he was not yet ready to return to work), and assisting him in developing some basic coping skills for managing his depression. Case management services were begun on the day Mr. D was discharged from the hospital. Mr. D was still significantly depressed and had little motivation to get out of bed in the morning. He had difficulty making decisions about anything (from choosing a psychiatrist to running the dishwasher) and required direction and support for accomplishing routine tasks. His case manager gave Mr. D a time limit for choosing a psychiatrist because Mr. D was unable to do so himself. After interviewing a few psychiatrists, he decided on one identified by his case manager. Mr. D was immediately started on another antidepressant, and the dosage was gradually increased to a therapeutic level. During this period, Mr. D was quite needy and fearful that he would never get better, needing frequent reassurance from his case manager that he would feel better at some point. The case manager met with Mr. D once weekly and had daily phone contact for the first 2 weeks, gradually decreasing contact frequency as Mr. D stabilized. Together they made up a written schedule of activities for each day; progressively Mr. D was able to follow through with most of them. Case management services ended a month after they started. At termination, Mr. D's depression was clearly lifting, his energy level and motivation were increasing, his activity level rising, and his feelings of hopelessness significantly decreasing. He expressed relief at having a psychiatrist he felt comfortable talking to and was very appreciative that his "team" had gotten him through this very difficult life transition.
Profile of Mr. K M r . K is a 73-year-old married, recently separated, father of four adult children who was referred while hospitalized for major depression following a suicide attempt.
The Goals and Principles of Psychiatric Home Care
45
Mr. K's depression was precipitated by his wife leaving him after 48 years of marriage. He was first hospitalized a month after this separation and treated for depression. Shortly after discharge, Mr. K became suicidal (overdose of sleeping pills, attempts to starve himself, and putting a plastic bag over his head) and was rehospitalized. After the second admission, he was followed by a home-care worker who initially made three home visits to Mr. K each week, which decreased to twice weekly then once weekly as he stabilized. With home-based care, Mr. K was able to be medication compliant, cope more adaptively with living alone for the first time in his life, grieve for the loss of his marriage, and gradually begin socializing again. He was not rehospitalized, nor did he again attempt suicide. With the patient whose isolation is long-standing or whose delusions of persecution have deepened reclusiveness, the challenges to forming a therapeutic relationship are often considerable. By demonstrating commitment and willingness to help, through acts as well as words, the home-care professional can secure the trust that is the sine qua non of any therapeutic relationship.
Profile of Ms. J Ms. j, a 77-year-old single woman, was referred for home-care services during an inpatient stay, which came on the heels of a long reclusive period. For more than 4 years Ms.J did not leave her apartment because of her paranoia. During these years, she was largely noncompliant with pharmacological treatment, except for short periods following home visits by a psychiatrist. W h e n finally hospitalized, Ms. J was actively psychotic and malnourished. Her inpatient psychiatrist made the home-care referral, and the case manager began working with her while she was hospitalized--assisting her in finding a place to live, getting her new clothing (she refused to return to her apartment), and hiring aides to work with her. Through this intensive early contact, the case manager was able to build a strong bond of trust with Ms.J. Upon discharge, Ms.J was minimally paranoid and accepting of the help offered her. The case manager made home visits twice weekly for 5 months. Ms.J maintained medication compliance, was able to go to her psychiatrist's and internist's offices, ate three balanced meals a day, and occasionally went out on a shopping trip for clothes. Ms.J's psychiatrist, who had known her for 20 years, reported that this was the best he had seen her in many years.
Principle #2: Monitor Clinical Condition (i.e., Ongoing Assessments) Many patients suffer relapses following a disruption in their treatment regimen. W h e n changes occur in their life and they discontinue medication, the stressors tip
46
PsychiatricHome Care: Clinical and Economic Dimensions
the balance and the symptoms reappear. For a home-care program to be truly effective, it should adopt a monitoring stance similar to that applied to other chronic medical conditions.As part of the maintenance program, clinical monitoring helps avoid debilitating and costly relapses.
Profile of Mr. C Mr. C is a 49-year-old, single, unemployed male with a history of multiple psychiatric hospitalizations and noncompliance with medication and treatment. Since the death of his mother in 1988, he has lived alone in his own apartment in NewYork City. His only family is a sister in Chicago. She is concerned about Mr. C's daily living skills (particularly eating properly) and would like Mr. C to give up his apartment and move to a community residence. During his most recent hospitalization, the social worker who was referred to him set priority services that included monitoring medication and treatment compliance, structuring daily activities, assisting Mr. C with paying bills, and beginning the process of applying to community residences. At this time, Mr. C has become quite connected to his case manager, who sees him twice weekly. He has remained compliant with medication and is relatively symptom-free. His self-care skills have improved significantly, and he remains determined not to abandon his apartment. He may eventually have to do this for purely economic reasons, not because of personal neglect. But for the moment he is able to sustain this more autonomous lifestyle through the "substitute" supports.
Profile of Mr. B Mr. B, a 55-year-old single man diagnosed with schizoaffective disorder, lives alone in a residential hotel in New York City. Mr. B lived with his mother until 9 years ago when he moved to his current address. He has a long history of acute episodes and decompensations, often triggered by medication noncompliance. Over the past 9 years, his elderly mother, who lives in the Bronx, would come and stay with Mr. B whenever he began to decompensate. Hospitalizations stays were avoided in this way. However, the health of Mr. B's mother has deteriorated significantly over the past year, and she has been unable to go to him. Mr. B's symptoms worsened, and he was again hospitalized. With only modest interventions by the case manager, Mr. B has been compliant with medication and treatment, the immediate concerns of the referent. He is unable to monitor his own medication since he becomes easily confused, but he is willing to take medication when it is prepared for him, a critical "service" his mother provided. Mr. B, at his request, was also referred to a new psychiatrist, who is able to take a more active role in his treatment. In addition to case management services provided by a social worker who visits him twice weekly, the program provides him with an aide who assists him with the activities of daily living.
The Goals and Principles of Psychiatric Home Care
47
Eight months after home-care services began, Mr. B remains psychiatrically stable and his overall functioning has improved.Without home-based care, Mr. B undoubtedly would have been rehospitalized, as he lives alone, is unable to monitor his own medication, and needs daily reminders to attend to personal hygiene.
Principle #3: Educate the Patient and Significant Others Many conventional psychotherapies have evolved from assorted developmental theories best categorized as ego psychology.The more conventional therapies--such as short-term therapies and cognitive therapy for depressionmalso draw on the client's cognitive skills to address barriers to improved functioning. The educational elements of good psychiatric work often are difficult to separate from purely psychotherapeutic work. And clinicians coming from different theoretical orientations and clinical experience give differential weight to "pure psychotherapy" versus educational interventions. Over the past 15 years, a growing number of practitioners have applied a philosophy of rehabilitation to the disabilities resulting from psychiatric illnesses such as schizophrenia.At its core, this rehabilitation involves education about the illness and counseling on making accommodations to the resulting limitations. It is our position that for patients with major psychiatric disorders---schizophrenia, bipolar disorder, and schizoaffective disorder--there should be "modules" of care that are explicitly educational or didactic. The counselor needs to engage the person in an assertive effort to understand the limitations stemming from the illness and identify strategies to advance recovery. The first challenge is to help patients understand that their "emotional illness," "mental problem,""paranoia," or "depression" is a medical condition.Analogy with physical conditions or reference to public celebrities with the illness can help the patient attain some objectivity and begin to distinguish the illness from self. The patient should understand that many psychiatric conditions have genetic links, like cancer. It also may be necessary to dispel some of the still too common myths that these illnesses are evidence of innate inferiority (e.g.,"Johnny is just a lazy bum!"). The patient needs to know that, in the words of one patient, depression or schizophrenia or bipolar disease are "not a death sentence." This education takes many forms, from literature to support groups. There is a growing body of first-person histories about mental illness.These include clinical autobiographies of those who were celebrities before their illness and first-person accounts by individuals who struggled with schizophrenia and other conditions and became known only when they wrote about their recoveries. In addition, a growing number of clinical "recollections" have been compiled by patients who are now professionals in mental health. Several excellent books have been written by professionals for the layman, among them OvercomingDepression (Papolos & Papolos, 1997).
48
Psychiatric Home Care: Clinical and Economic Dimensions
Family education also is a factor. The first priority is to help the family understand the nature of the illness. This includes explaining the function of the various therapies that may be recommended: pharmacology, support groups, structured day programs, and so on. When the patient is a child, the case manager has a definitive obligation to discuss the illness with the family, if in fact the services are not delivered through a family therapy approach.When the patient is an adult, the legal obligations may not be so obvious, but the ethical obligations and the strategic wisdom of engaging the family should certainly be considered. This begins with a thorough assessment that evaluates the family's strengths and limitations in helping the patient. For example, have the parents "burned out" after too many failed therapeutic interventions? Are family members available on a day-to-day basis, or is the patient devoid of any local family supports? Family members are often good educators for the clinician. They are knowledgeable about the course of the patient's illness, the risk of relapse, warning signs of decompensation, and strategies to avoid aggravating the illness. Increasingly, professionals are coming to view parents as experts, especially when the sick member is a young adult who has been living with the family and struggling with the illness for years. In the process of education, the clinician should be alert to information family members have that they may not consider significant. Is there a calendar pattern of depression? Has the depression followed losses? In speaking about stressors in general during the course of educating the patient and family, clinicians should listen for family members to say, " O h yes, we've noticed that with Johnny!" In this way the clinician and the family can become "co-instructors," helping the patient see patterns or stressors and identify coping mechanisms. In dealing with schizophrenia, the field has identified some interventions in connection with "family affects" that are particularly relevant to symptom management in a family setting.When telling the patient's family about "expressed emotion," one simultaneously wears the hat of a clinician and an educator. In the 1960s, it was fashionable in some circles to attribute to families the power to cause schizophrenia. Elaborate theoretical constructs were developed to explain the disordered thinking of patients with this illness. This attitude was best captured in the phrase "schizophrenegenic mother." More disciplined minds prevailed as we came to understand that schizophrenia has clear genetic origins. It is not a purely functional illness, and verbal therapies alone will not significantly reduce symptoms. At the same time, the field has demonstrated that there are certain family affects or climates that can contribute to or retard recovery.When the patient is residing with the family, a home-care professional has the opportunity to observe these patterns and sometimes modify them. Families, like patients, have ambivalent attitudes towards treatment, for multiple reasons.The clinician's goal here is to aid the family as they support the patient's attempts to function outside of the hospital environment. Support for the family can
The Goals and Principles of Psychiatric Home Care
49
be gleaned from several sources. Families can derive great strength from other families struggling with the same enduring illnesses.Among the support groups, the National Alliance for the Mentally Ill (NAMI) is one of the most active. NAMI was started by a group of family members who wanted their concerns about appropriate quality of care heard by providers and policy makers.At this point, NAMI has become a large, effective lobbying organization, with national headquarters inWashington, D.C., and state and local chapters in nearly every state in the country. It offers tangible support to families through newsletters that list resources in the community, announcements about new drugs coming on the market, notices of relevant legislative changes, and local support groups. Often, family members can become more effective allies in the recovery process by learning what others have tried.At a minimum, families routinely report feeling "not so alone." (The value of family support groups is discussed in the chapter by 1Kudich and Daichman.)
Principle #4: Encourage Treatment Compliance Noncompliance with psychiatric aftercare is one of the leading contributors to recidivism. Patients are often fearful of medication, uneducated about side effects, or otherwise reluctant to follow through with the treatment prescribed for them. The patient who "forgets" his medication or only intermittently complies with a treatment component is a prime candidate for relapse and rehospitalization. In-home services are well positioned to promote compliance with pharmacological treatment and psychosocial interventions. Most adult patients receiving in-home care are prescribed antidepressants and/or antipsychotics. In this situation, the priority for the home-care worker is to help the patient adhere to the pharmacological regimen. This can take many forms, from education to dynamic interventions. At one extreme, there is the here-and-now practice of setting up 21 small boxes, corresponding to a week's schedule of pills. This simple "crutch" of having someone lay out a week's drug regimen can be sufficient to encourage many patients to follow the course of treatment and self-monitor compliance. A list that allows the patient to check off the pills as they're taken can also serve as a reminder tool for monitoring compliance. A phone call from the home-care worker or a reminder during a visit also helps the patient remember to take the pills.
Profile of Mrs. G Mrs. G is a 41-year-old married housewife with a history of recurrent depression leading to several inpatient stays. Her most recent admission followed her second admission by only a few months. During this time, Mrs. G had become withdrawn, poorly nourished, and delusional. Her personal hygiene significantly deteriorated, she reported having numerous panic attacks, and her mood was depressed.
50
PsychiatricHome Care: Clinical and Economic Dimensions
Mrs. G had difficulty following through with outpatient treatment, and there were several indications that she was not compliant with medication. During the latest admission she was referred for home care with the goals of connecting her to supportive services in the community, monitoring medication and treatment compliance and daily living activities, assisting her in establishing a daily routine, and providing family psychoeducation and support. The case manager met with Mrs. G once weekly following discharge from the hospital and maintained at least twice weekly phone contact with her.At the onset of case management services, Mrs. G was described as dazed, confused, and overwhelmed, with flat affect. Over the weeks, she gradually became more animated, her personal hygiene improved, she participated in the various self-help groups she was referred to, and was compliant with medication and treatment. Mrs. G had some difficulty remembering to take medication and required reminders, but she was able to follow through on a medication schedule worked out by her case manager. As she became stable and more organized, case management services were tapered to once every other week. By the end of case management services, which ceased 3 months after they started, Mrs. G was compliant with medication and treatment, involved in self-help groups, was able to handle daily living skills, and was relatively symptom-free. A special concern with medication noncompliance occurs in connection with bipolar illness. Clinicians and researchers have identified a particular risk associated with discontinuance of psychopharmacology with bipolar illness.There is growing evidence that when patients discontinue their lithium, the recidivism rate is accelerated. For example, when a patient first discontinues the meds, the symptoms will reappear in 2 years, for example. If the patient resumes the meds and again discontinues, the symptoms will reappear in 18 months. The next cycles will be even shorter until a very rapid cycle profile occurs. A disciplined, regular approach to chemical treatment appears to be very effective in forestalling this rapid cycling, with its attendant clinical risks and treatment expenses.
Principle #5: Foster Structured, Fulfilling Daily Activities One of the biggest challenges facing psychiatric patients, especially those not attending a clinical day program, is structuring their time.All of us have worked with chronic patients for whom Monday looked like Thursday and Thursday looked just like Sunday: empty. For many, the loss of structure provided by work or professional activities is a secondary disability.Assisting clients in structuring their daily or weekly schedules can go far in addressing the aimlessness associated with unstructured days. This structure may be what sets the home-care worker apart from colleagues in other psychiatric settings.The social worker, nurse, or psychologist dispensing home care can learn what opportunities and obstacles there are for making accommoda-
The Goals and Principles of Psychiatric Home Care
51
tions to the patient's clinical condition--opportunities and obstacles that often aren't evident in the environment of an inpatient unit or a day hospital. The emptiness individuals with a mental illness experience operates on a number of levels, each reinforcing the other.The missing structure in their lives often reflects that they are not engaged in any endeavors outside the house. Often this stems from the lethargy associated with their illness.This lethargy feeds on the lack of goals or"targets."The lack of goals contributes to the lack of structure, and on and on. In a real sense, it often doesn't matter where you cut into this self-reinforcing cycle. A day hospital will give the patient a structured few days each week. A volunteer job will also provide structure. For some, structure and routine may follow from setting a goal and negotiating the subsidiary steps required to reach that goal. For example, learning to use a computer requires first learning the keyboard, which in turn will probably require a schedule of lessons, and so on.The goals may or may not be important in their own right. But for the patient living alone with no structure in the week, these goals help give form to the week. Discharged patients, especially those with a history of multiple hospitalizations, often require assistance with the everyday chores: personal hygiene, grocery and clothes shopping, budget planning, and maintenance of a clean, safe home environment. In selected cases, paraprofessional staff is employed to work closely with the patient to "model" the daily living skills that are most in need of attention and to assist them in reacquiring the skills. (See chapter 10, this volume, byWolf on the role of paraprofessionals as "extenders.") Maintaining an organized and well-regulated lifestyle has its own therapeutic benefits. Structuring time and resuming previous work or activities can be a focus of assistance, as can vocational and avocational counseling.Arranging transportation to essential services such as medical appointments also falls within the scope of environmental assistance. Group homes and halfway houses are excellent laboratories for patients to relearn daily living skills--and for younger patients to learn them for the first time. In these communal settings, the patients receive instruction and constant reminders until they become comfortable and habituated to caring for these personal items. Among the advantages of group settings is that patients can learn to prepare meals and set agendas in tandem with others. Practicing these skills alone in an apartment is not quite as much fun, and probably not as effective. However, acquiring social skills is critical if the patient is to reintegrate with the community. And these are skills and supports that can be provided through a home-care program.
Profile of Mrs. F Mrs. F is a 20-year-old married mother who was first hospitalized for depression 6 months after the birth of her child. She was referred for home-based case management with the goals of monitoring medication compliance, providing supportive
52
Psychiatric Home Care: Clinical and Economic Dimensions
counseling, structuring her day, connecting her to a parenting group, and providing psychoeducation for her and her husband. Prior to hospitalization, Mrs. F had expressed feeling unable to care for her child and handle the activities of daily living. She was overwhelmed by the responsibility of child care and had thoughts of killing herself. U p o n referral, the patient had no knowledge of resources in the community, limited parenting skills, was at risk for relapse, and had the potential for child abuse. Mrs. F received case management services for 3 months. During this time, she was medication compliant (although initially she was not able to be on medication because of medical complications), increased her awareness of parenting skills (including home-safety instruction) ,j oined a parenting group, was able to utilize stressreducing techniques provided by her case manager, and entered a vocational program that offered child care. She was not rehospitalized during this time and denied suicidal thoughts, as well as any thoughts about harming her infant.
Principle #6: Enhance Patient's Grasp of the Illness, Identify New Episodes Early, and Help Patient Adapt to Psychosocial Effects of the Illness The practices under this principle are closely related to educating the patient about the illness. If the stigma of mental illness can be reduced, it becomes possible to discuss the illness in a detached, objective manner. The patient can be separated from the illness and taught to view it as an assault on their bodies, not as an integral part of their personality or something over which they have no control. As in other areas of treatment, an informed consumer is a "good" patient. Foremost, patients need to understand that they indeed have an illness. Too many of us working in the field skip over this fundamental bit of education. It is useful to discuss the nature of the illness so patients understand it has an etiology that is not linked to their self-worth.The clinician should talk to patients about family patterns of the illness, the stressors of this hectic life, the disabilities inflicted by the illness, and, without taking away hope, the limitations of the available treatments. Patients need to be told that we have drugs that can control and alleviate the symptoms. But they also need education about the side effects of these drugs. As with any other medical condition, we have an obligation to discuss the benefits and risks of drug therapy and of noncompliance. Beyond this obligation and the obvious benefits of education, there is another compelling reason to speak candidly with the patient. Not"leveling" with the patient can have devastating effects on the therapeutic relationship, which is so important for a successful outcome. O n e reason to conduct a full psychosocial assessment is to identify the stressors that are followed by heightened symptomatology. The stressors for patients with schizophrenia turn out to be no different from the stressors we are all susceptible to: loss of work, separation from a spouse, loss of a relative, and, the most ironic, loss
The Goals and Principles of Psychiatric Home Care
53
of functioning. For some psychiatric patients, as for all of us, anniversaries of losses are stressors.A relative, friend, or case manager who knows the patient's history and is familiar with past stressors can anticipate an anniversary date or a planned change in residence and can work to "fortify" a patient to help get him or her through these difficult times. There are numerous ways of"fortifying" a patient. It might involve a temporary increase in an antidepressant. For some patients, it might mean increasing their social contacts so they are not left at home brooding. For others, there is a ritual that binds their anxiety. The key is to identify the stressors and the patient's compensatory tools and help the patient discover strategies for getting through the stressful period or event. Those with psychiatric illnesses who have returned from their nightmares all speak about the importance of objectifying the illness and designing strategies to make accommodations to the illness. We are all familiar with Braille on elevators, broad door frames for wheelchair access, and "signing" for the hearing impaired.We do not yet have accommodations that address the mentally ill as a group, but a savvy case manager and a motivated patient will find numerous opportunities for environmental manipulation, as the following vignettes show.
Profile of Mr. A Mr. A, a 28-year-old man who is single and unemployed, was only recently out of law school when he was referred for case management services.Within the months prior to his referral he had two psychiatric hospitalizations.The diagnoses were psychotic disorder N O S and mixed substance abuse. Mr.A was referred by his inpatient psychiatrist during the second hospitalization for the purpose of locating a psychiatric community residence, making a plan for daily structure, and monitoring his compliance with treatment and medication. Mr. A's case manager assisted him in finding appropriate housing and in structuring his days.The case manager worked closely with Mr.A, even escorting him to appointments with his psychiatrist, since Mr.A admitted that when unaccompanied he sometimes stopped at a bar for a few beers. His case manager also accompanied Mr.A to various M I C A meetings to assist him in finding an appropriate g r o u p n a somewhat difficult process because of Mr.A's persistent delusions. During the month after Mr.A's second hospitalization, he had two beer-drinking episodes, but by the second month he reported that he no longer drank beer and was medication and treatment compliant. One of the case manager's most important services has been coordinating Mr. A's treatment. Initially, Mr. A's psychiatrist and the staffs of the residential and substance abuse programs had minimal contact with one another, and no clear treatment plan was developed. Mr.A's case manager has maintained weekly contact with all other providers, and this communication has resulted in a clear, coordinated
54
Psychiatric Home Care: Clinical and Economic Dimensions
treatment plan.As a result, when potential crises loom, the team can move quickly, and in tandem. In follow-up, Mr.A'S inpatient psychiatrist was pleasantly surprised that he had not been rehospitalized, as she felt his risk for relapse was high. She stated that Mr.A's remaining in the community was a direct result of his case manager's work with him.
Profile of Mrs. I Mrs. I, a 65-year-old divorced mother of three adult children, lives alone in a N e w York City apartment, where she has lived since her divorce 20 years ago. Mrs. I has at least a 20-year history of social isolation, depression, and hypochondriasis. She consistently refused psychiatric help, despite her family's urgings. Mrs. I was first seen by a psychiatrist in the spring of 1994 when hospitalized for a medical condition. She was started on Prozac and Mellaril after being diagnosed with major depression with psychotic features.With medication, Mrs. I's psychiatric symptoms significantly decreased, and she became more comfortable being with other people (her family primarily), although she continued to be somewhat depressed and anxious, had little self-confidence, and was afraid to leave home to go anywhere (in part due to a gait disturbance which made her feel unsteady). As her symptoms decreased, it became apparent to Mrs. I and her family how little, beyond her family, she had in her life. In addition, although Mrs. I felt that medication helped her feel less nervous, she did not feel she needed it and stopped the Mellaril for a brief period of time. Mrs. I was referred for home-care services by her younger sister, who wanted assistance in helping Mrs.I come up with a plan for daily structured activity.When questioned, Mrs. I also complained about a lack of any social life beyond the family home. A case manager worked with Mrs. I for 3 months. During that time, Mrs. I established a connection with two local senior citizen centers, where she became involved in various activities, was able to build an active social life, reentered physical therapy (for gait disturbance), and was compliant with medication. When case management ended, Mrs. I was no longer depressed or socially isolated. Her self-confidence improved, she was able to travel alone by public transportation, and she was learning to use a computer that her son had given her.
Principle 7: Reduce the Morbidity and Sequelae through the Use of Community Supports Authors, futurists, sociologists, and academics write exquisitely about the anomie and personal isolation of many in our society. A number of these writers have made compelling connections between the fragmentation of our relationships and their clinical implications. Vance Packard anticipated the accelerating destruction of America's "communities" when he wrote about our transient society in A Nation of Strangers (1972).
The Goals and Principles of Psychiatric Home Care
55
While the book did not focus on the clinical or psychological implications of this trend, there is abundant clinical evidence that early losses and traumatic events have both immediate and long-term psychological effects on children born and raised in our highly mobile and transient society. In more recent years, a number of popular authors have brought to our attention the correlation between thin social supports, social fragmentations, and medical conditions. Alvin Toffler's first important book, Future Shock (1970), identified the harmful effects of our mobile, transient life on our physical health. He popularized the notion that major stressors such as divorce, relocation, and death of an intimate all contribute to stress-related diseases. Wallerstein and Blakeslee (1996) identified the after-effects of separation on the sons and daughters of divorced parents. Sociologist Amitai Etzioni (1993) has been writing for years about the disintegration of community and the loss of individual sacrifices that are the bricks for construction and maintenance of a community. He repeatedly asks that we look at the psychological sequelae of"farming out" to transient, untrained caregivers the child-rearing tasks that historically have been the mainstay of the family. Perhaps in reaction to these social observations, it has become fashionable to speak about the loss of community in this country. Hillary Clinton's book, It Takes a Village (1996), pays homage to the importance of social supports. Mrs. Clinton, who has been very active in the Children's Defense Fund, is clearly aware of the spread of child abuse and neglect and how these problems are linked to the lack of social supports. It is also argued that thin social supports aggravate formal clinical conditions, and vice versamthat social supports can be palliative. Because social isolation is both a symptom and contributing element to the persistence of depression in a great many patients, informed use of community resources can be an effective lever in speeding recovery and maintaining stability. Community resources range from purely professional services to self-help groups for specific illnesses.After thorough psychosocial assessment, an effective case manager will identify the resources suitable for the patient's functional and diagnostic profile and will remain an active agent in helping the patient utilize these resources. For many patients, the first resource to consider is a psychiatrist. An increasing number of acute episodes must be resolved during an outpatient course of treatment. If the patient requires active case management services, it is imperative that the case manager maintain frequent contact with the treating psychiatrist.There are psychiatrists who function exclusively as pharmacologists and who deliberately do not employ psychodynamic or social interventions. But with the growing efficacy of antidepressants and psychotropic medications, the pharmacologist often represents a critical "community" support. In addition to psychiatric care, there are other professional resources, such as day hospitals and vocational training programs. As is the case with inpatient programs, day hospitals are increasingly used as acute-care programs. Both in the public sector and in commercial sectors, these programs are time-limited. The home-care worker should use day hospitals, where appropriate, to help the patient during an
56
Psychiatric Home Care: Clinical and Economic Dimensions
acute period. Communication with this resource is also essential, as is a proper match between the patient's clinical condition and the structure and mission o f the day program. There is nothing more demoralizing for a patient than attending a day program--or, for that matter, receiving any other service---in which the goals and functioning of the treatment are not made clear. The case manager should be able to detail the treatment benefits that can be expected from the day hospital (i.e., m o n itoring of medication intake, structuring the patient's life, offering support from peers). If the referral is not made by the case manager, the case manager should reach out to the day program staff to help them understand the patient's current clinical condition and establish a modus operandi most beneficial to the patient. The day hospital needs to know when and how to reach the clinician, and both parties must understand under what circumstances the hospital will contact the case manager outside of regularly scheduled phone contact. At the same time, the case manager should remain involved on a regular, frequent basis to sustain the therapeutic relat i o n s h i p - t h i s most important therapeutic element. The same considerations involved in using community resources apply to support groups such as Alcoholics Anonymous (AA).The patient should understand the role of these programs and how the case manager's services will complement them. In the case of AA, communication with the "provider" is simply not possible. But the case manager can still work with the patient to locate a suitable AA group and encourage the patient to participate in the program. Locating community resources is often only the beginning. Patients can't be expected to know how to use these services effectively.A good case manager will take the time to explain in laymen's language how the particular services can be effective in supporting recovery. Even after the patient understands the nature of the services and how to use them effectively, it is advisable for the case manager to remain in regular contact with the professional at the other setting in order to get feedback on how the treatment is progressing or if it requires modification. Patients may be eligible for additional services and benefits but might be unable to access them without assistance.Advocacy services include identifying and clarifying the patient's need for legal, immigration, financial, or other services, and assisting the patient in identifying the appropriate resources for help. In this way, life-circumstance problems are not transformed into seemingly insurmountable situations that overwhelm the patient and threaten stability.
REFERENCES American Psychiatric Association. (1994, D ecember).American Psychiatric Association practice guideline for the treatment of patients with bipolar disorder.American Journal of Psychiatry, 151 (Suppl. 12), 1-36. Clinton, H. R. (1996). It takes a village:And other lessons children teach us. NewYork: Simon & Schuster. Dorwart, IL. A., & Hoover, C. W. (1994). A national study of transitional hospital services in mental health. Hospital and Community Psychiatry, 84 (8), 1229-1234.
The Goals and Principles of Psychiatric H o m e Care
57
Etzioni, A. (1993). The spirit of community: Rights, responsibilities and the communitarian agenda. NewYork: Crown Publishing Group. Goldacre, M., Seagroatt,V., & Hawton, K. (1993, July 31). Suicide after discharge from psychiatric inpatient care. Lancet, 342, 283-286. Packard,V. (1972). A nation of strangers. NewYork: McKay. Papolos, D. F., & Papolos,J. (1997). Overcoming depression (3rd ed.). NewYork: HarperCollins. Toffler, A. (1970). Future shock. NewYork: Random House. Wallerstein, J., & Blakeslee, S. (1996). Second chances: Men, women and children a decade after divorce (1Kev. ed.). Boston: Houghton Mifflin.
This Page Intentionally Left Blank
Home Cafe's Inte ace with the Psychiatric Hospital System Winifred Christ
CHAPTER
SUMMARY
Psychiatric home care has become both a viable alternative to hospitalization and an effective intervention during a subacute phase of recovery. In the current environment, in which inpatient care is held in reserve for the treatment of severe, intolerable symptoms, a home-based aftercare program is becoming increasingly attractive, for economic as well as clinical reasons. H o m e care is a unique treatment strategy because it is both a locus of service and a flexible combination of behavioral interventions designed to maintain at-risk patients in the community. H o m e care can fortify and enhance the ability of the natural setting to contain, support, and stabilize the symptomatic individual who would otherwise require a supervised level of treatment. Because home care is a flexible menu rather than a prescribed set of services, it can be variously reconfigured to meet the changing needs of a given patient over time. H o m e care is as equally able to de-escalate a crisis as it is to provide long-term patient monitoring at spaced intervals. A service without walls and without rigid structure, home care can be highly responsive and economical in delivering the most fitting interventions for the exact time periods required. It is argued that the psychiatric care organization of the near future will be capirated, managed, and patient-centered, rather than organized around service Psychiatric Home Care: Clinical and Economic Dimensions
Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
59
60
Psychiatric Home Care: Clinical and Economic Dimensions
providers. In other words, care will fluidly match the immediate needs of the individual patient rather than be structured to carry out a particular program (e.g., day treatment). With its capacity to individualize, underwrite normal functioning, and follow chronic patients over the long-range course of illness, home care is currently the level of service most in synchrony with this developing model. Because patients will be permanent "members" of health care networks, home care's capacity to ensure their successful maintenance in or transition to community living will be critical to the mission of the integrated delivery system.
INDICATIONS AND CONTRAINDICATIONS FOR PSYCHIATRIC HOME CARE Choices along the home-care continuum are based on many factors, including the nature of the patient's illness (acute, limited duration vs. chronic, deteriorating course), the patient's capacity to return to normal baseline functioning, availability of funding, and a nontoxic, viable living situation that contributes to psychological equilibrium. Patient characteristics associated with a positive response to home-care services are as follows: the capacity to trust, form alliances, and relate in a stable manner over time; manifests some acceptance of need to manage illness, values stability; is open-minded regarding medication; maintains several ongoing relationships; has goals/desires for self; has experienced a better level of functioning that is meaningful. 9 D i a g n o s t i c m h a s episodic illnesses or chronic states that can be stabilized. 9 H i s t o r i c a l ~ h a s responded to stable structure, continuity. 9 Social s u p p o r t s ~ h a s some sustained relationships that are reciprocal.
9 Behavioralmhas
Patient characteristics associated with a poorer response to home care include the following: not form alliances; low awareness of illness; high tolerance of symptoms; uses substances; very negative about medication; has no involved significant others; has nomadic lifestyle; is assaultive, antisocial, addicted. 9 D i a g n o s t i c - - h a s illness characterized by rapid cycling; multiple relapses; deteriorating course; poor response to medication. 9 H i s t o r i c a l ~ h a s not responded to any structure provided. 9 Social s u p p o r t s - - h a s only nonreciprocal relationships.
9 Behavioral~does
As with many discrete facilities that are interfacing or integrating with large delivery systems, home care is shifting from a focus on those patients who best fit its services to those w h o m the psychiatric network needs or requires to be served. To be effective, however, the services offered must adapt to the patient's needs, not the
Home Care's Interface with the Psychiatric Hospital System
61
reverse. H o m e care is often seen as the treatment of choice under the following circumstances: 9 engaging reluctant or nonresponding patients 9 strengthening, educating, treating an existing support network 9 intervening with patients who find institutional care unacceptable 9 managing patients -with both a serious medical and mental condition 9 as a first line of defense with patients whose condition is beginning to deteriorate The most powerful influences driving the shift in the locus of psychiatric care to outpatient and home-care settings have been technological advances (development of a powerful array of psychotropic medications) and financing mechanisms (competitive case rates vs. cost-based reimbursement).These changes have facilitated the partnering of acute care psychiatric hospitals with behavioral home-care services. The incentives are to minimize use of high-cost care and transition patients quickly to lower cost delivery settings. As capitation becomes the predominant large-population health management strategy, home-care agencies will develop programs that promote wellness, as well as track, monitor, and support stable individuals over time.
OPTIONS
FOR
HOME
CARE
H o m e care is uniquely able to provide treatment that can progress from intensive, multidisciplinary, daily interventions to periodic monitoring and checkups, depending on patient requirements. Because it does not involve a facility with permanent structure and boundaries, home care can respond immediately to needs that range from crisis management to long-term maintenance. Categories of home-care options vary along two important axes: duration of service and intensity of treatment.
Home-care categories
Short-term Long-term
Low-intensity
High-intensity
A C
B D
Option A: Short-Term, Low-Intensity Treatment For clients whose outpatient provider is not immediately available and who need low-intensity community care (e.g.,individual therapist, clinic-based service), brief, limited service is ideal. This option is also suitable for clients who are reluctant to
62
PsychiatricHome Care: Clinical and Economic Dimensions
connect with an office-based professional and need evaluation and guidance regarding their choices.
Case Example of Ms. E Ms. E, a 24-year-old part-time student and computer specialist, was briefly hospitalized with a manic episode that included psychotic features. Her community therapist was on vacation at the time of her discharge from the hospital. Ms. E was seen twice by the inpatient therapist over the immediate postdischarge period, and this follow-up was supplemented by several home visits by a home-care case manager.These visits permitted review of the adequacy of Ms. E's living situation, contact when she failed interim appointments, and a check that she was taking medication, functioning reasonably, and adjusting to community reentry.
Option B: Short-Term, High-Intensity Treatment This combination is the most frequently occurring among users of home care. The category includes those persons who are in an immediate crisis, as well as those who are transitioning from a high-intensity treatment setting to other mental health programs.
Case Example of Mrs. S A 32-year-old Italian Catholic woman and mother of three children, Mrs. S, was repeatedly admitted to inpatient services following episodes of serious cutting and suicidal threats. During inpatient stays, Mrs. S was always quickly stabilized and responsive to antidepressant medication. Psychosocial factors were very significant in precipitating hospitalizations and included the patient's becoming overwhelmed by crises with her children, combined with financial strain and marital conflict. Mrs. S and her husband lived at a distance from both families of origin and were fairly isolated in the community. Thus, the hospital served as a respite and as a means for Mrs. S to have personal needs met. Mrs. S was referred to home care after other outpatient arrangements had failed. Home-care services included provision of a homemaker, couple counseling and psychoeducation, and training in the management of stress and negative affects and in effective child-rearing techniques. After 6 weeks of these intensive services (tapered thereafter to a maintenance level), the patient was able to achieve community tenure and avoid costly inpatient readmission.
Option C: Long-Term, Low-Intensity Treatment In this category are those clients who are stabilized but require long-term monitoring to prevent relapse. Important services include medication review, assistance with resources and linkages, family psychoeducation, and counseling.
Home Care's Interface with the Psychiatric Hospital System
63
Case Example of Mr. B Mr. B, a 43-year-old white single male with a Scottish-Irish, Protestant background, had a long-term paranoid schizophrenic illness. He lived alone, but in proximity to an older sister who was divorced with two teenaged children. The patient was selfsupporting through a backroom job as repairman at a small appliance shop. In the context of his sister's move out of state, Mr. B developed an acute psychotic episode for which he had to be hospitalized by the crisis team. He was quite isolative and strongly opposed to receiving aftercare treatment at any outpatient facility. The patient was referred to home care for medication monitoring and case management to ensure adequate self-care and to provide a stable, continuous professional presence in his life.This low-maintenance regimen was preventive in that symptoms could be monitored closely and medication adjusted as his condition varied over time.
Option D: Long-Term, High-Intensity Treatment This combination of home care is indicated for individuals with chronic, serious mental illnesses who are unwilling or unable to participate in site-based treatment programs. These clients require long-range assistance with daily living skills, medication management, individual and family counseling, linkage to services, and assistance with resources and entitlements. In addition, many require substance abuse interventions.
Case Example of Ms. C Ms. C, a 63-year-old woman with chronic schizophrenia, has a history of state hospitalization, homelessness, and long-term noncompliance with any level of community care. She had more than 30 hospital stays in which she was temporarily stabilized. However, on release, she would become erratic in taking medication, fail to keep appointments, and disconnect from mental health providers. She had a younger brother with resources who was willing to underwrite home care to reduce the burden on the family produced by her repeated decompensations. Ms. C required supervision, help with structuring her days, as well as assistance in managing all tasks of daily living. Over time, Ms. C was connected to a low-demand mental health socialization program that offered interpersonal contact and activities. While she required long-term oversight and assistance in organizing such selfmaintenance tasks as money management, home-care workers were able to teach her to prepare simple meals, to do laundry, and other tasks. She cooperated with inhome medication management and transport to essential outside services. Throughout the course of care (and especially in capitated arrangements), individuals may move fluidly among options A through D, as all are immediately available under the auspices of home care. The advantage to clients is that no new admissions criteria must be met, and the intensity and frequency of services can be varied without having to introduce new caregivers. This continuity and sense of
64
Psychiatric Home Care: Clinical and Economic Dimensions
"membership" or belonging are important benefits that can accrue over time to individuals connected with the home-care continuum.These are rare commodities in a delivery system of psychiatric care that repeatedly "hands off" patients to the next lower (or higher) level of care, thereby breaking off whatever meaningful relationships may have been established. High-intensity home care is most likely to be recommended for a relatively brief period at the outset. Usually, the goal is to avert hospitalization or provide a structured stepdown from a more intensive treatment environment. Obviously, if highintensity treatment is required over a lengthy period, cost savings over other settings may be narrowed, though patient preference for the arrangement may be high. Although rarely used outside a fully capitated system, long-term, low-intensity care makes both clinical and financial sense when used in a preventive, stabilizing manner. For individuals with persistent mental illnesses, this option ensures a stable holding environment that is independent of patient motivation and initiative.
COLLABORATING WITH THE OUTSIDE HOME-CARE
PROVIDER
The initial supports that must be in place for effective home-care interventions are a thorough assessment and the establishment of a relationship. Carson (1995) notes that, "Without a relationship built on trust, caring, compassion, empathy, hopefulness, and even a sense of humor, no effective teaching or case management can occur" (p. 29). For persons referred from a psychiatric hospital, a thorough assessment begins on the inpatient service. During the initial contact with the home-care team, hospitalbased staff should provide as comprehensive a picture as possible of the patient's biopsychosocial circumstances. The information contained in the usual psychiatric case history is an initial base, but, to be maximally effective, home-care staff also needs to be informed about the following relevant dimensions" 9 Information regarding the entire network of individuals (and services) involved with the patient and family. This includes patient-family willingness to accept home care and understanding of the service. 9 A description of the patient's best level of functioning prior to hospitalization and those factors that were supportive. 9 A list of immediate problems to be addressed, together with goals and available resources. Ideally, these should be compiled in collaboration with patient and family. Based on these assessment modules, the inpatient staff and home-care provider should be able to design a comprehensive aftercare plan that includes monitoring of financial, psychiatric, medical, housing, daily activities, and transportation resources. As systems of care delivery are formed, it would be helpful if home-care
Home Care's Interface with the Psychiatric Hospital System
65
workers could access the permanent psychiatric records that contain universal information needed by all providers, as well as episode-specific data. Such databases would provide critical information in case of emergency and would eliminate the need to establish entirely new records on the part of each caretaker. However, until this is a reality, home-care agencies need immediate knowledge of demographics; the psychiatric case history, including discharge diagnosis and medication; the psychosocial, nursing, and therapeutic activities evaluations; and the comprehensive discharge plan. It is preferable that the home-care staff interview the patient on the hospital unit to establish rapport, determine the level and types of care required, and confer with unit staff involved with the patient's care. Of special importance is collaboration with nursing and therapeutic activities staff members, who can provide current functional assessment of and data about management issues. Ideally, the home-care team will visit the patient's planned living environment and will have made contact with all significant others prior to discharge. There is both anecdotal evidence and research supporting the wisdom of close collaboration between intramural and extramural caregivers.Altman (1983) pointed out that adherence to the discharge plan is three times higher when a collaborative meeting among patient, family, inpatient staff, and community providers is held prior to discharge. In addition, the rehospitalization rate was noted to be three times less among patients provided with the predischarge meeting. Altman posits that the key variable is linkage among members of the aftercare support team, who meet one another, clear up any misconceptions, and operationalize the plan by "walking through" every aspect. Important questions (such as "what if") can be answered, gaps filled, roles clarified, and problems resolved prior to implementation.This helps ensure that all participants understand how the plan will work and how they will interface with one another. While the brevity of inpatient stays may preclude an in-person collaborative conference with all participants in the discharge plan, a speaker-phone call might be used as a creative substitute. It is critical that significant others have an opportunity to review the anticipated burden so that concerns can be dealt with openly and suitable supports can be established as needed. The patient's transition from inpatient to home care can be smoothed if both the inpatient team and the home-care staff thoroughly review what has been accomplished and what the expectations are for the immediate postdischarge period. In addition, the patient's agreement and cooperation can be confirmed and concretized by having the next set of providers physically present, thus demonstrating their involvement and availability. Such discussion (at minimum, among patient, family, inpatient, and home-care staff) can forge important alliances at the critical point where care is handed off, and where discontinuity is most likely to occur. To assume responsibility for high-risk cases, the home-care team not only requires its own internal psychiatric backup but also the commitment of the referring hospital to readmit and to provide crisis evaluation and intervention (such as
66
PsychiatricHome Care: Clinical and Economic Dimensions
24-hour care). Because home-care teams are highly responsive and able to accept cases rapidly (thereby ensuring a short length of stay), inpatient facilities are usually very willing to sign letters of agreement to readmit any patients who become acute and unstable directly after discharge. For its part, the home-care program must encompass the following elements in order to manage patients leaving inpatient settings after brief stays: 9 Care tailored to the individual patient's evolving needs; 9 24-hour, 7 day-per-week access to care via phone, backed up by an emergency clinic 9 Capacity to follow the client through episodes of more intense care (inpatient, day hospital, etc.) 9 Service provision within the home, liaison with significant others in the broad network associated with the patient, and case management to organize all needed care 9 Problem-oriented care, with problems and goals formulated with the patient and network, including family, if possible 9 Assistance in maintaining or acquiring daily living skills 9 Support and education of persons important in the patient's daily life 9 Advocacy for patients and families
EFFECTING A TRANSITION THE HOME-BASED TEAM
TO
At the point of discharge, the primary home-care staff member assigned to the patient should review a written service plan with the patient and family. This plan should specify issues to be addressed, by what staff, and with what intensity. In addition, the home-care staff member should review the patient's daily schedule and address practical issues such as funds for immediate living expenses, filling of prescriptions, managing appointments, and so on. Patient and family concerns and questions should be elicited because they help to identify issues that can cause crises if immediate attention is not given to them. Often practical concerns will emerge, such as,"John has never assumed responsibility for taking his medication at home. How do I handle this?" or "How will Jennifer get to her doctor's appointment next week when I'm at work?" Any misunderstandings about how the aftercare plan will operate can be clarified so that roles and responsibilities are defined and clearly understood. Important telephone numbers and how to access services 7 days per week, 24 hours per day should be given to patient and family at this time. Part of the home-care team's role is to coordinate care, and members should make contact with all other providers (prior to discharge, ifpossible).The goal is to establish a collaborative network marked by easy, fluid communications that promote effective care.
Home Care's Interface with the Psychiatric Hospital System
67
After the initial referral to home care, the home-based service provider should be involved in any subsequent inpatient hospitalization. Continuity of care providers and participation in discharge planning are key elements in reducing the duration of the inpatient stay. Because home care is often the least restrictive, least costly, and least disruptive level of health care, a case can be made that for many patients termination of home care is never appropriate. Chiu and Primeau (1991) note that stabilization of chronic mental illness requires significant time, during which bonding and building of trust can occur. These processes, in turn, are critical in establishing a therapeutic alliance and in achieving recognition of illness and need for treatment. In such instances, it is vital that the home-care team can act as a preventive, monitoring agent without an imposed cut-off date.
P A R T N E R I N G W I T H FAMILIES A N D NONPSYCHIATRIC PROVIDERS As Manley (1995) points out in his review of home health care,"while professional staff perform skilled assessments and treatment, families and significant others provide the basic supportive care that clients must have to remain in their homes" (p. 3).To reduce stress and enhance management skills, families and patients require education "about the nature and management of their disorders," using an approach that emphasizes problems rather than symptoms (Shanahan, Falloon, Laporta, & Krekorian, 1990, p. 352). Effective strategies include training in problem solving and communication skills, as well as techniques for managing anxiety and depression, for contracting and enhancing social skills, for controlling anger and other areas of personal dyscontrol. Marks et al. (1994) note that families were appreciative of hospital admissions being averted and agreed to early discharges when they knew that the home-care team would give constant support at home.Thus, it is possible to reduce the number and length of inpatient stays if home-based interventions that can substitute for institutional care and treatment are immediately and consistently available. A consistent, trusting, and collaborative alliance over time and immediate, effective responsiveness are the key principles in forging an enduring partnership with significant others in the patient's life. By empowering families with the knowledge that they can access assistance at all times, their burden is significantly reduced and responsibility for problems and decisions shared.Whatever aptitudes and resources the family or network possesses can be amplified and maximized by the home-care team to support a stable, psychologically healthy environment for the patient.Without this bolstering, families often turn to hospitalization as the only mechanism available to provide respite and crisis resolution. The significance of involved family is so great that home-care contact should be maintained even during quiescent periods in the course of a long-term illness.This
68
PsychiatricHome Care: Clinical and Economic Dimensions
can serve as a very cost-effective preventive strategy because the family is reassured that, if necessary, the full range of intensive home-care interventions can be deployed at a moment's notice. Such long-range monitoring can provide alerts to patient and family about the need for medical or psychiatric tests or examinations, and can offer a periodic review of the match between patient functioning and resources. In addition, early signs of decompensation can often be identified in follow-up discussions, resulting in prompt intervention.
DIFFERENTIAL
USE OF STAFF
To respond flexibly to the broadest range of patient needs, the home-care team must be composed of staff members who can deliver many levels of service: the medical and psychiatric aspects of care, hands-on client training, provision of daily care service, counseling and psychoeducation, as well as resource linkage and coordination. The clear principle in assigning staff to a given patient is to utilize the scarcest, most costly resources with careful stewardship, delegating tasks where possible to the most cost-effective level of mental health caregiver. However, this mandate must be balanced by the patient's capacity to tolerate and relate to multiple individuals rather than to a single professional. Quinland and Ohlund (1995) point out that the psychiatric nurse is trained to assess the patient's physical and mental status and to implement a medical care plan. Although the nurse can also competently provide social interventions and psychoeducation, the bulk of these activities need to be shifted to lower cost mental health staff, thereby freeing R.N. time for those services that this discipline alone is qualified to provide. When clients have mental disorders associated with a serious medical condition (e.g., congestive heart failure), nursing case management can ensure coordination of psychiatric and medical care, timely adjustments in medication, and education of the patient in multiple disease management. The psychiatric nurse is key in maintaining long-term compliance with medication by assessing whether the patient has a supply of medications and understands the schedule and reasons for each medication.The nurse also can evaluate side effects. Similarly, the psychiatric social worker can provide special expertise in dealing with patient-family dynamics, developing interpersonal competencies and management skills, and offering focused psychoeducation about both disease and wellness processes. Immediate and continuous availability of psychiatric backup for medication management and consultation is critical if the team is to undertake creative, nontraditional approaches to problem solving and community tenure.Therefore, the homecare team should be backed by 24-hour, 7-day-a-week psychiatric on-call services. Personal care and management of skills of daily living are the special purview of the home health aide, who is trained to recognize deficits in these areas. The aide
Home Care's Interface with the Psychiatric Hospital System
69
supplements those functions that the patient cannot perform on his own because of the disabling effects of the mental disorder. In addition, the aide directly assists in the recovery of those skills through modeling and instruction. Ideally, the aide will be highly responsive to fluctuations in the patient's capacity, promoting greater autonomy when possible but moving to fill in gaps when these occur. Thus, an interdisciplinary team with a broad repertoire of community-based treatment competencies is the strongest combination of staffing for home care.This multilevel team offers the client one locus of care, varying levels of intervention, and relationships with several professionals rather than one. Marks et al. (1994) note that efficiency in home care may depend more on skills in providing problem-oriented treatment within the community than on specific professional background. Effective training of staff members by the home-care agency is crucial in ensuring that each professional knows how to identify key problems and set and reach realistic goals with the patient, using a coordinated team approach.
VARIABLES AFFECTING THE OUTCOME OF PSYCHIATRIC HOME CARE A number of early randomized studies comparing home-based care with standard services focused on patients at risk for inpatient admission (Fenton, Tessier, & Struening, 1979; Hoult, Reynolds, Charbonneau-Powis, Weekes, & Briggs, 1983; Stein & Test, 1980).All found that home-based care was less expensive, and two of the studies (Hoult et al., 1983; Stein & Test, 1980) affirmed that home-based care provided a better clinical outcome. More recent studies summarized below confirm the findings of this earlier research, while extending the measures across several parameters--improvement in symptoms and social adjustment, patient and relative satisfaction, number and duration of inpatient admissions, and cost of standard versus home-based care.
UTILIZATION
PATTERNS
Knapp et al. (1994) conducted a comparative study of persons with severe mental illness who were evaluated as requiring emergency inpatient admission. Using a randomized allocation, patients aged 17 through 64 were assigned to be admitted or to be cared for by a home-based program.Throughout the 20 months of the study, patients treated at home showed lower use of psychiatric inpatient, day, and outpatient services but greater use of nursing services outside the hospital setting than the cohort hospitalized and discharged to traditional aftercare providers. In terms of family and informal care, Knapp and his colleagues found no significant difference between the two groups in time spent by relatives and friends in providing support.
70
Psychiatric Home Care: Clinical and Economic Dimensions
In addition, there was no cost-shifting from the mental health system to other outside agencies, families, or patients.
Clinical O u t c o m e
A study by Marks and his colleagues (1994) stated that outcome---in terms of number and duration of inpatient admissions, ratings of clinical and social function, and patient and relative satisfactionmwas superior with home-based care and greatly reduced the number of inpatient bed days. Home-based care "improved symptoms and social adjustment slightly more than did standard in/out-patient care, and was definitely preferred by patients and relatives" (p. 191). Home-based intervention reduced the duration (not the number) of crisis admissions by at least 80%, but only if the community team was responsible for discharge. However, the authors note that even after 20 months of home-based care many patients still had"severe symptoms, poor social adjustment, no .job, and need for assertive follow-up and heavy staff input" (p. 179). It is the severely dysfunctional mentally ill, Marks and his colleagues point out, who place the heaviest load on home-care staff time. This is because maintaining asylum functions requires workers to coordinate many different resources and visit nonresponsive patients frequently.While the time investment increases during crises and can be reduced during quiescent periods, hundreds of hours of staff time per year are required to maintain the least responsive cases. Although total treatment time may be greater under home-based care, Burns, Raferty, Beadsmoore, McGuigan, and Dickson (1993) found substantial differences in the amount of time invested by professional discipline. Patients receiving standard outpatient service had 76% of their total treatment time delivered by physicians, whereas physicians accounted for only 48% of home-based treatment time. Home care allows a greater proportion of services to be provided by less costly mental health professionals because they are operating within the context of a multidisciplinary team. (See chapter 10, this volume, by Wolfe on the use of paraprofessionals.) Marks et al. (1994) found that brief home-based care yielded "major and lasting improvement" (p. 191) when it was used with disorders when there is efficacious treatment (e.g., anxiety disorders). Of significance is the fact that of 92 patients given home care, only 3 dropped out in the course of the study, suggesting that this intervention has a very high rate of adherence and satisfaction. Home-based care does not appear to reduce the death rate of chronically ill patients (from suicide or serious medical disorders) beyond that experienced by standard care groups. In a study of chronically ill patients who had been discharged from a psychiatric hospital in New York City, Curtis et al. (1996) report that the death rate among both case management and control groups was 7%, twice the average for the nonpsychiatric population in the same age range. This finding suggests that symptoms of dangerousness and potential suicidality, as well as failure to follow
Home Care's Interface with the Psychiatric Hospital System
71
health care recommendations, must be carefully assessed and monitored by homecare staff.
Cost Comparisons Burns et al. (1993) conducted a prospective randomized controlled trial of community-based outreach service versus standard outpatient care.The trial involved a total of 172 patients with a range of psychiatric disorders.A substantial reduction in both number and duration of inpatient admissions was noted within the experimental group, whereas outpatient and general medical care utilization remained the same. When diagnostic groupings were controlled for, costs were 50% greater for standard care than for home-based acute psychiatric services. The researchers note that although there was no attempt to reduce hospital care, the experimental team assisted patients in less disruptive ways (i.e., through assertive outreach) and were able to be much more flexible in their work practices (e.g., eliminating the need to set appointments during office hours, to use wait lists, or ration specialist care). Further, home-based teams (composed of social workers, nurses, psychologists, therapeutic activities staff, and psychiatrists acting as conjoint decision makers) were a less medicaUy dominated service and used an increased proportion of psychosocial interventions (psychoeducation, support of patient-family strengths, reduction of behavioral problems, basic skill building, and medication management techniques). These findings were similar to those noted by Knapp et al. (1994), who found that home-based patients had significantly fewer inpatient admissions than the control group and therefore incurred much less cost over time. If hospital stay charges are subtracted for both groups, the weekly cost for controls and home-based care patients would be approximately the same. The importance of developing patient selection criteria for home care to ensure good stewardship of limited financial resources is underlined by Prescott, Soeken, and Griggs (1995): Cost effectiveness of home health services depends in part on appropriate referral of patients for whom the services will be maximally beneficial . . . . However, additional research is warranted to determine if and what systematic factors influence referral decisions for home health care and which specific patient characteristics and patterns of home health service utilization are associated with the most cost-effective long-term outcomes, including prevention of unnecessary rehospitalizations. (p. 94)
Patient Satisfaction Mthough all studies note significantly higher patient and family satisfaction with home care than with standard care, Morris (1996) specifies the aspects of care that are viewed as most valuable by patients. These are identified as companionship, reduction of isolation, provision of supportive therapy, and medication supervision.
72
Psychiatric Home Care: Clinical and Economic Dimensions
Morris also points out that psychiatric home care assists patients in creating a physical and psychological environment in their own settings, which facilitates healthy functioning. The home-care staff member can observe directly whether or not the client can apply what he has learned and can thereby tailor treatment plans to fit unique and evolving needs.
S U M M A R Y OF P O S I T I V E F A C T O R S IN HOME
CARE
A number of factors appear to be crucial for positive outcome of home-based care: 9 Interventions are provided in the patient's natural environment, thereby reducing missed appointments and enhancing treatment engagement. 9 Services are available 7 days per week, 24 hours per day, and are provided at times that best meet client and family needs, including weekend and evening hours. 9 Patients and families are viewed as full collaborators in treatment. Problems to be addressed and goals to be achieved, as well as barriers to this effort, are mutually identified. 9 Treatment is focused on strengths and on skill building. 9 Engagement and outcome are viewed as the responsibility of the treatment team, which is authorized and supported in developing alternative or creative strategies. 9 Continuous availability of medical backup and provision for the rapid administration of psychotropic medications are key supports to home-care staff. Studies show that home care universally produces greater patient and family satisfaction than standard care. This intervention can reduce the number and duration of inpatient stays, provided the community team is able to continue work with the patient and participates in the discharge decision. In terms of reduction of symptoms and social adjustment, positive outcome is greatest for those individuals with mental illnesses for which there is effective treatment.With chronic, severe, and unremitting illnesses, home-care clients need assertive follow-up and intensive staffinput for an indefinite period to maintain stability and community tenure.
OPEN
ISSUES IN HOME
CARE
Some of the issues and questions that need to be addressed as home-care utilization increases are the following: 9 Specifying the patients' diagnoses, and circumstances under which home care is the most effective intervention; providing criteria for movement to less intense levels of home care over the course of an illness. 9 Determining if the need for home care could be lessened if psychiatric care were delivered in attractive, comprehensive, patient-oriented centers with transportation, meals, all levels of care, and other services provided.
Home Care's Interface with the Psychiatric Hospital System
73
9 Establishing if it is best for home-care services to be lodged within a delivery system or organized as independent services that have encompassing relationships with multiple providers. 9 Achieving support (and payment) for home-care monitoring of inactive and quiescent, long-term cases. Hammer (1981) points out that severely and persistently ill psychiatric patients usually have very small social networks, unconnected to one another.According to Beels (1981), patients are therefore likely to lose their human support system over the course of the illness and to have only formal, nonreciprocal relationships that are easily broken off and of little significance.When an individual belongs to a cluster in which there are mutually supported connections, ties are less likely to be severed during a crisis. Obviously, the brief encounters experienced by patients who are handed off to various providers of care do not promote engagement or a "joining with a professional helper" that can strengthen a fragile psychological balance. In contrast, the ongoing involvement of the home care team does not depend on the patient's social skills or ability to reciprocate in relationships. Unfortunately, managed care too often has minimized the importance of the patient's relationships with caring, stable professionals in promoting adherence, collaboration, and motivation to take progressive steps in illness management. Docherty (1990) notes that "the critical variable of achieving adherence of the patient to the therapeutic regimen is dependent on this [doctor/patient] relationship. Essential to the therapeutic relationship is the sense on the part of the patient that the patient's well being is paramount, that the relationship will be stable and consistent. (pp. 141-142)
One of the most valuable aspects of home care within a managed care environment is its potential to reestablish for patients long-term therapeutic alliances with providers who remain constant over time, and who can be trusted and worked with as partners in devising successful strategies to cope with complex and perplexing serious mental disorders.
REFERENCES Altman, H. (1983,July).A collaborative approach to discharge planning for chronic mental patients. Hospital and Community Psychiatry, 34 (7), 641-642. Beds, C.C. (1981, January). Social support and schizophrenia. Schizophrenia Bulletin, 7 (1), 58-72. Burns, T., Raferty, J., Beadsmoore, A., McGuigan, S., & Dickson, M. (1993). A controlled trial of homebased acute psychiatric services: II. Treatment patterns and costs. BritishJournal of Psychiatry, 163 (1), 55-61. Carson,V. B. (1995,April). Bay area health care psychiatric home-care model. Home Healthcare Nurse, 13 (4), 26-34. Chiu,T., & Primeau, C. (1991).A psychiatric mobile crisis unit in NewYork City: Description and assessment, with implications for mental health care in the 1990s. InternationalJournal of Social Psychiatry, 37 (4), 251-258.
74
Psychiatric H o m e Care: Clinical and Economic Dimensions
Docherty, J. P. (1990). Myths and mystifications of managed care.Journal of Mental Health Administration, 17 (2), 138-144. Fenton, F. R.,Tessier, L., & Struening, E. G. (1979).A comparative trial of home and hospital psychiatric care: One year follow up. Archives of General Psychiatry, 36 (9), 1073-1079. Hammer, M. (1981, January). Social supports, social networks and schizophrenia. Schizophrenia Bulletin, 7 (1), 45-57. Hoult,J., Reynolds, I., Charbonneau-Powis, M.,Weekes, P., & Briggs,J. (1983). Psychiatric hospital versus community treatment:The results of a randomized trial. Australian and New ZealandJournal of Psychiatry, 17 (4), 150-167. James, L. C., MiUman, E. J., Struening, E., & D'Ercole, A. (1996,April). Deaths among former psychiatric inpatients in an outreach case management program. Psychiatric Services, 47, 398-401. Knapp, M., Beecham, J., Koutsogeorgopoulou, V., Hallam, A., Fenyo, A., Marks, I. M., Connolly, J., Audini, B., & Muijen, M. (1994). Service use and costs of home-based versus hospital-based care for people with serious mental illness. BritishJournal of Psychiatry, 165 (6), 195-203. Manley, J. (1995). Home health care in the continuum: A review. Continuum:An InterdisciplinaryJournal on Continuity of Care, 16 (3), 1-9. Marks, I. M., Connolly, J., Muijan, M.,Audini, B., McNamee, G., & Lawrence, R. E. (1994). Home-based versus hospital-based care for people with serious mental illness. BritishJournal of Psychiatry, 165 (6), 179-194. Morris, M. (1996,June). Patients' perceptions of psychiatric home-care. Archives of Psychiatric Nursing, 10 (3), 176-183. Prescott, P., Soeken, K., & Griggs, M. (1995). Identification and referral of hospitalized patients in need of home-care. Research in Nursing and Health, 18 (2), 85-94. Quinlan,J., & Ohlund, G. (1995,April). Psychiatric home-care--an introduction. Home Healthcare Nurse, 13 (4), 20-24. Shanahan, W., Falloon, I. R., Laporta, M., & Krekorian, H. A. (1990). The Buckingham ProjectmThe description of a home based mental health service. Irish Journal of Psychological Medicine, 7 (2), 151-153. Stein, L. I., & Test, M. A. (1980). Alternatives to mental hospital treatment: I. Conceptual model, treatment program, and clinical evaluation. Archives of General Psychiatry, 3 7 (4), 392-397.
Ingredients of a Successful Collaboration between a Social Worker and Psychiatrist in an Extended Recovery Program Lisa Toth and Adella Wasserstein
CHAPTER
SUMMARY
The close collaboration between the authors began some years after we met on an inpatient unit as trainees in social work and psychiatry. In the first part of this chapter, Dr. Wasserstein writes about the beneficial effects of a teamwork approach to treating individuals with chronic psychiatric illnesses, including discussion of the elements considered critical to helping patients accept their illness and become active agents in their recovery. Particular focus is placed on the therapeutic relationship, dynamic strategies to improve treatment compliance, and the importance of coordinated treatment.Also detailed are the therapeutic advantages that result from having the social worker's contacts take place in the patient's own environment. In the second part of the chapter, Ms. Toth illustrates these clinical considerations by recounting the recovery of a young woman struggling against schizophrenia. This clinical vignette delineates the key interventions by the authors, the treating clinicians. P A R T I: T H E V A L U E O F C O L L A B O R A T I O N During conversations regarding our shared patients, we have often marveled at how much better they were doing, how we saw them as participating in and benefiting Psychiatric Home Care: Clinical and Economic Dimensions Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
.
75
76
Psychiatric Home Care: Clinical and Economic Dimensions
from treatment in a way they had been unable to before our collaborative efforts. Each of the patients had worked clinically with one of us before a referral from case manager to psychiatrist or vice-versa turned us into a new u n i t ~ a collaborating trio of patient/case manager/psychiatrist. Until now we had noticed but not qualified what did "better" actually mean, or "benefiting" or "participating"? In short, how was it that we were evaluating this collaboration? We also wanted to examine the elements in the shared work among the three of us (patient, case manager, psychiatrist) that yielded what seemed like so much more than any one or two of us alone had previously been able to achieve.
Ingredients for Success A program is usually the unit for evaluation in mental health. Mthough the psycb.iatrist-case manager collaboration described in this chapter is not a program, per se, it is similar in that there is a unit providing a service. Evaluations commonly focus on need, outcome, efficiency, and/or process.Mthough all are important, here we focus on outcome and process. Certain pervasive issues face the patient who is chronically and persistently mentally ill. These issues revolve around the mundane tasks of daily living which, when not well negotiated, significantly hamper recovery. For example, ifa patient does not have a morning routine to aid in remembering to take needed medication, this could lead to psychiatric symptoms that in turn can affect judgment about whether to take medications at all. Just as problematic is that the patient often has difficulty identifying many of the things in day-to-day life that are being negotiated well and cannot decipher the strengths to be fortified and built on. Communication within the treatment team is another ingredient for success. Traditionally communication between psychiatrist and case manager takes place around a time of trouble onlymsomewhat of a continuation of the problemoriented inpatient approach. However, the in-home case manager can see difficulties in the patient's daily life that do not result in decompensation but distinctly affect the patient's quality of life. Furthermore, the patient's day-to-day strengths, which are observable firsthand in the patient's home environment, can be factored into the treatment plan. We were convinced that outpatient-based treatment should consist of more than alleviating problemsmthat it could, at minimum, work to attempt to prevent problems. For many patients, it could also work to define and slowly achieve quality-oflife goals. But the success of such goals necessitated an actively shared effort. What we have found to be most important in this collaboration has been the close coordination maintained in the outpatient setting (at a minimum, a weekly voice-mail message with an update) and the unique contribution of having the case manager monitor the patient's day-to-day environment.
Ingredients of a Successful Collaboration between a Social Worker and Psychiatrist
77
Some of our patients have been individuals with a time-circumscribed illness, such as a major depressive episode. But most of our collaboration has been with patients with a severe or persistent mental illness, such as schizoaffective disorder or schizophrenia. Although we have found the therapeutic collaboration helpful with all types of patients, it is with the latter group that the success has been so pronounced.
Defining Success The most basic outcome we target is stabilization in the form of symptom reduction. Ideally this involves having the symptoms remit back to a time w h e n the patient had virtually no significant dysfunctional symptoms (i.e., a recovery). This is possible for a patient with a circumscribed Axis I disorder but less likely for a patient with a severe and persistent mental illness. At times one must be content to strive for maintenance of function and prevention of relapse. However, we increasingly believed there was another type of success, one that was not defined by the degree of symptoms but by eliciting the patient's own setting of goals. The setting of goals is the essence of structure, excitement, and drive. It is the integral thread in most of our lives and one that is often overlooked in the patient with a severe and persistent mental illness. In short, symptom management or remittance and the patient's own goal setting were what we meant w h e n we talked in the previously unqualified terms of"better,""participating," and "benefiting." Clearly, there are many different ways to measure success. In our experience, there are three measures that repeat themselves. The first is a multistep process in which the patient sets goals.We three (patient, case manager, psychiatrist) as a team then figure out how to moderate them and devise steps that make the goals most likely to be achieved. Finally, we assess goal attainment together.Although the goals set are not always achieved, we see reassessing a goal that is not working as part of the treatment process. The second measure of success is increased interactive ability. This measure takes many forms.We might learn that a patient is taking part in family life in a way that has not been done for years, or that the patient is participating in a tai chi class at the local community center. The last measure of success is the patient's increasing ability to handle, not just tolerate, a stressful situation (e.g., a patient perseveres in working on her relationship with her father, who has terminal cancer).
The Process of Reintegration The psychotic process is a ffactionating one. The normal smoothness of thought is disrupted by the brain's difficulty in prioritizing sensory stimuli and their integration with thoughts. T h o u g h t form disorganization makes it even more difficult for
78
Psychiatric Home Care: Clinical and Economic Dimensions
the person to express what he feels and is thinking. Even the most stable patients with severe and persistent mental illness have the residual effects of this thought disruption. Such fractionation in one's external and internal world makes it extraordinarily difficult to put together the pieces of one's life. We feel our collaboration allows treatment to be more cohesive, rather than one more jagged piece of the patient's external world.Although collaboration is nothing new and is practiced on inpatient units and in outpatient clinics, it is lost to the patient in private-sector therapy. Often with private therapy the psychiatrist's office is associated with illness and decompensation, an association that can tinge the psychiatrist-client relationship. In contrast, the case manager sees the patient in his or her own world, on his or her tuff. This more easily allows for integration of the patient's survival strengths and day-to-day needs in the treatment process.Although this can also occur in the psychiatrist's office, there are more obstacles (see Joel Kanter's, chapter 3, this volume, discussion of the pros and cons of office-based treatment). The case manager can see what the patient may have difficulty articulatingmthe elements in the patient's home environment that might complicate the treatment being discussed in the office environment (e.g., helping a patient with paranoia distinguish between what is safe and what is not in his or her living environment). The case manager also models social relationships and practical things a patient can do within the home environment. Finally, effective collaboration between case manager and psychiatrist, and between office and home care, elucidates and reinforces the approaches that need to be taken in various environments. This helps the patient define and realize goals within his or her world and allows involved practitioners to view the patient's illness in the context of the patient's total environment. Emphasizing these concerns facilitates a number of things.The patient's success or failure is no longer evaluated solely by exacerbation or remittance of symptoms. This may remove one obstacle to the patient's identifying a presence or exacerbation of symptoms because there is more separation between symptoms and failure. W h e n a patient is more forthcoming, the result can be earlier intervention strategies, fewer hospitalizations, and improved and enhanced quality of life (for both patient and family).
P A R T II: M A R Y - - - A
CASE STUDY
I first met Mary when her mother requested that I work with her around vocational issues. Mary was 37-years-old, had never held a job for more than a few weeks, had never finished college, and had a history of drug and alcohol abuse in her early 20s. She had been in psychiatric treatment for more than 10 years, including a number of psychiatric hospitalizations and day programs. She also had been on various antipsychotic medications for many years. At the time of our first meeting, Mary had
Ingredients of a Successful Collaboration between a Social Worker and Psychiatrist
79
been on Clozaril for 5 years and was currently on a much lower dose than her psychiatrist recommended. She was adamant about not raising the Clozaril dosage and, in fact, was looking forward to taking herself off the medication completely. Although her family and her psychiatrist encouraged her to increase the Clozaril by at least 25 mg because of her paranoid behavior, Mary consistently refused. O u r first meeting took place in late summer at a diner across the street from a psychiatric vocational program she was attending at that time. She was unhappy with this program, which appeared to be little more than a sheltered workshop, and she was eager to find a job. It was on the basis that I could help her find a job that she consented to the meeting. Mary, an overweight woman casually dressed in pants and a sweatshirt, chain smoked throughout the meeting.Although she appeared to be somewhat responding to internal stimuli, she was very direct in her questions and was quite personable. She was clear about wanting help in finding a job and expressed her interest in becoming a therapist. She also expressed unhappiness with her psychiatrist, w h o m she had been seeing for 5 years, and stated that she was planning to switch her treatment over to a Clozaril clinic. Mary would not give specifics about why she wanted to leave her psychiatrist.At the end of our meeting she agreed to meet again. I attempted to schedule a home visit with Mary shortly after our first meeting, but she found excuses not to meet. Within 2 weeks of our meeting she bought a one-way ticket to Los Angeles, where one of her brothers lives, and flew there. She did make contact with her brother and stayed with him briefly. Mary maintained phone contact with her mother, who gave Mary an 800 number at which she could reach me. Mary called me from a pay phone and wanted to know how I could help her find a job if she decided to come back home. I gave her a few suggestions, which she expressed some interest in. She said she would keep in touch with me. Meanwhile, with the assistance of two social workers who worked with Mary's parents, I was trying to find a psychiatrist and lab in Los Angeles where Mary would be able to get her Clozaril and blood tests.We knew that she would be running out of the medication very soon. The next phone call I got was from a police office in a California emergency room, who had found my name and number in Mary's pocket. He discovered Mary standing in the middle of a busy intersection, yelling at traffic.When he approached her, she fought him, and he used pepper spray to disable her. Mary spent the next week in a psychiatric hospital. She was quite psychotic upon admission and was given Haldol IM to subdue her before the Clozaril was restarted. Mary apparently had stopped taking her medication after she arrived in California. W h e n she was stabilized her brother flew her back home. Mary was accepted into the Clozaril outpatient program of a local hospital, where she began seeing a resident psychiatrist weekly. I began to visit her once a week at her apartment. O u r first visit after her return was brief. She was very guarded, suspicious, responded to internal stimuli, and was somewhat hostile. Subsequent visits went better as her paranoia decreased and she became more
80
PsychiatricHome Care: Clinical and Economic Dimensions
comfortable with me. Over the next few months we gradually formed a relationship as she progressively opened up, although at times her paranoia would cause her to question why I might be looking at her in a particular way. She remained without insight into her illness and maintained a stubborn denial against increasing her medication. She continued to talk about decreasing her medication and looked forward to the day she could be medication free. However, despite this stated desire she never decreased her medication or even missed any doses. Weekly visits to Mary became a combination of daily structure planning, advice on cleaning her apartment, and supportive psychotherapy. One visit consisted of throwing out a massive amount of packaged foodmwhich she had stored in bookshelves--that was past its expiration date. Another visit consisted of talking about family issues (her father has terminal cancer). Mary struggled over vocational issues. She not only wanted to work, she wanted a career. She was very interested in becoming a Gestalt therapist and believed she could do this despite not having completed her undergraduate degree. She was not interested in going back to college (a good choice at this time since her psychotic symptoms clearly interfered with her concentration). She had difficulty following through on anything. She would register for a workshop or lecture at a localY, send her money in, then cancel. She refused to consider a day treatment or a prevocational program. Her apartment, although not filthy, had not been cleaned or even vacuumed in many months, and she was unable to follow through on any particular cleaning task. She was increasingly open with me and began talking about her psychotic symptoms, although she referred to them as real events, not symptoms. She spoke of times when she felt unsafe and believed she was being followed or having things said to her by people she could never identify. At times she would admit that she was unsure if certain things were real or if they were just thoughts. I negotiated with Mary's mother to hire someone to do a one-time cleaning of Mary's apartment. Her mother was initially resistant because she had previously hired a cleaning woman for Mary's apartment, but Mary never followed up with day-to-day maintenance. I said I would work with Mary to keep her apartment clean. Mary's mother agreed, and the apartment received a thorough cleaning. Around this time, Mary began keeping a weekly calendar that was very similar to the one I carried. During each visit we would plan her weekmappointments, family visits, cleaning tasks, and so on. Gradually she began following through on most things that she wrote down, including cleaning her apartment. Throughout the spring and early summer she was doing fairly well. However, she remained unwilling to join a daily program and unable to put together any other vocational plan. She also continued to have periods where she was suspicious, even of me at times. In early July I received a phone call from her psychiatrist, who stated that she planned to hospitalize Mary because of her increasing psychotic symptoms. Mary had expressed feeling frightened because she believed her neighbor had killed
Ingredients of a Successful Collaboration between a Social Worker and Psychiatrist
81
someone and was going to kill her. Mary refused to be hospitalized voluntarily and was admitted against her will. This hospitalization proved to be difficult for a number of reasons, but it was also a turning point in Mary's treatment and in her attitude towards her illness. Mary became a "difficult patient" on the inpatient unit. She refused an increase in medication, although she agreed to take the dosage she had been taking prior to hospitalization. However, the hospital was unable to provide her with the lower dose tablets she had been taking and would only give her the higher dosage tablets. Mary did try to split the tablets on her own, but they crumbled and she was unable to take even the lower dosage she had been taking prior to admission. This was perceived on the unit as noncompliance.The inpatient social worker erroneously reported that Mary was refusing all medication. The longer Mary went without medication, the more psychotic she became, and the more she presented a "management problem" on the unit. She was put on room restriction and told that the hospital was going to have her court-ordered to take medication. I visited Mary in the hospital at least once, and sometimes twice, a week. She was always glad to see me and eager to talk. She was clearly psychotic. She had difficulty organizing her thoughts, was responding to internal stimuli, and had delusional thinking. Despite these very disorganizing symptoms, she began to have some interesting insights. She told me that me that she was beginning to think that maybe she really did need medication. She expressed having always believed that she really didn't need the medication, but with the increase in psychotic symptoms she was beginning to question this attitude. However, she steadfastly held to the belief that she did not need to be hospitalized and that if discharged she would promise not to leave town.The longer she was off medication, the clearer it was that she needed to remain in the hospital. By the time she was taken to court, the judge agreed with Mary's doctors and she was ordered to take medication. Once on medication--an increased dose of Clozaril and the addition of RisperdolmMary's psychotic symptoms began to clear, and it was much easier for her to organize her thoughts. She remained unhappy with the hospitalization and with her doctors and refused to return to the outpatient clinic upon discharge. She was angry at her outpatient doctor for having hospitalized her. At this point I recommended a new psychiatrist to Mary. In discussions with her mother and with a social worker colleague who had worked with Mary's parents for a number of years, we had agreed to present this particular psychiatrist to Mary. Mary was delighted to have the referral and voiced her feeling that if this psychiatrist was a friend of mine she felt safe. Upon discharge from the hospital, Mary returned home to her apartment and began once-weekly therapy with her new psychiatrist.After the first session, Mary expressed feeling very good about Dr.W, who "explained symptoms to her." Mary stated that she never really thought she had a mental illness and was now having to reevaluate that belief.With each subsequent visit, Mary became more willing to talk
82
PsychiatricHome Care: Clinical and Economic Dimensions
about her symptoms and how they interfered with her functioning. She began to understand that feeling unsafe--having thoughts that her neighbors were trying to hurt her--was a symptom that medication could alleviate. Although Mary and I had had a good relationship prior to and during her hospitalization, our relationship became more solid with the positive connection made to Dr.W.This may have been due in part to the increased medication, but it also reflected the excellent relationship between Dr. W and myself. Mary knew that we had worked together in the past and that I trusted Dr.W.With this knowledge, she was able to approach being in treatment with Dr. W as safe and supportive. Dr. W and I continue to speak at least once a week and share information and thoughts about Mary. Mary knows about this contact and probably regards it as a safety net. For a long time, Mary had expressed the desire to become a psychotherapist, specifically a Gestalt therapist. I felt this to be an unrealistic goal because of her own psychotic illness, the lack of an undergraduate degree, and the many years she had not worked or gone to school because of her psychotic symptoms. However, I never tried to dissuade Mary from this goal. I knew that the difficulties she would come up against in trying to become a therapist would ultimately help her determine whether or not this was an attainable goal. Soon after she began treatment with her new psychiatrist, Mary began to explore the local Gestalt therapy institute, attending various open houses there. She got an application and planned to fill it out.Although the application clearly stated that a master's degree was a requirement of the program, Mary wanted to apply anyway as she had been told that a master's degree was not always required. In the end, she was told that her application could not be accepted because she did not have the education or experience required to enter the program. Fortunately the person who told her this was sensitive to Mary, did not make her feel unwelcome, and invited her to continue attending various events at the institute. Mary was very disappointed by this rejection and did have a few difficult days with increased psychotic symptoms. However, she did something she had never done before.At her next psychiatric appointment she told Dr.W. that she was having symptoms, didn't feel safe, and felt she needed an increase in her medication! With this episode, Mary began a process where she reports an increase in symptoms both to her psychiatrist and to me and requests more medication when she is more psychotic.When her symptoms subside she, with the support of Dr.W., lowers her medication back to the original dosage. Such progress has also taken place in the context of Mary being more open to hearing information about schizophrenia from Dr.W. and in more openly discussing this information with me during our sessions.Although Mary still talks about having a desire to lower her medication, she asks for both Dr. W.'s and my opinion. I have told her that I don't think she should lower her medication since she continues to have psychotic symptoms that respond to an increase in medication. A year ago Mary would not have been able to engage in this type of discussion, but now she nods her head in agreement and says things like, "I wouldn't mind trying
Ingredients of a Successful Collaboration between a Social Worker and Psychiatrist
83
Olanzipine, but I hear that it doesn't hit as many receptors as Risperidol does" She appears to be at a point where she does not want to lose any more ground and understands that it is not her mental illness alone that prevents her from working towards her goals. Her response to her illness is ultimately what determines where she can go in her life. She is beginning to accept responsibility for the control of her symptoms, and as she does this is able to control more aspects of her life. Mary has become increasingly concerned abut the lack of structure in her life and is struggling to put more meaningful structure in her day-to-day living. She continues to attend a psychosocial club that she has gone to for many years and also has begun attending another club.At this second psychosocial club, there is a weekly transitional employment workshop through which she was able to get a temporary job at a sample sale for two weekends.Although Mary states that it was hard work, she was able to work full days for both weekends and was very proud to have earned some money. After this job she again had a heightening of symptoms but was able to increase her medication and maintain her equilibrium. During another of the transitional employment workshops she found out about a peer counseling program offered by a local psychiatric residential program. The primary requirement to become a peer counselor was to have a psychiatric illness. Mary showed me the information she had on this program and wanted to know what I thought. I told her I thought she would make a good peer counselor. To apply for this program Mary had to write a statement of interest. She and I discussed what should go into the statement and how it should be constructed. Over the next few weeks Mary wrote and edited a statement and had her sister type up a final copy. In this statement Mary writes about her mental illness. She states clearly that she has a mental illness and has been in treatment and on medication for many years. She says she is now stable and that medication has helped her and expresses her interest in learning to be a peer counselor for other people who have mental illnesses. At this time Mary is in the process of sending in her statement and hopes to begin the training program. She has of her own volition gone to visit the facility where the training will take place and has even sat through part of a training session to get an idea of what is involved. This has bolstered her interest in the program, and she is looking forward to beginning.
E L E M E N T S OF S U C C E S S There are many factors that have gone into Mary's success over the past few months. One most certainly is her desire not to lose any more ground than she already has lost. She will be 40-years-old and is acutely aware that she does not have in her life what many others in her age group have. She also does not want to be in psychiatric programs for the rest of her life. She sometimes talks about feeling depressed
84
Psychiatric Home Care: Clinical and Economic Dimensions
when she's around her friends from the psychosocial club she has attended for many years. She describes them as being in a rut and blaming others for their problems. Mary does not want to be like this. Mary also likes having a case manager. She looks forward to my visits, and since her return from California over a year ago she has never canceled a visit. She has found these visits valuable for any number of reasons. I have helped her with a few things in her apartment--hanging a picture, clearing kitchen shelves of old food, installing a kitchen utensil rack, showing her how to open a window she never knew could be opened.Although many of my visits essentially constitute supportive psychotherapy, the fact that these take place on her turf rather than mine is significant. O u r relationship is therapeutic, but because we meet each other outside an office environment it therefore becomes more of a social relationship than it would be otherwise. An important factor in Mary's progress over the past few months has been her change to a new psychiatrist w h o m she really likes. Dr. W. is a very warm, cheerful woman who is not easily thrown by psychotic symptoms. She will try many interventions with a patient who is psychotic before recommending hospitalization. She and Mary have developed a very trusting relationship, one in which Mary feels comfortable reporting an increase in psychotic symptoms without fearing that she will be immediately hospitalized. Dr. W. has allowed Mary to become a partner in her treatment, not just a passive patient. In addition, Dr.W. and I communicate often about Mary. O u r reports are not in any way limited to times w h e n Mary is having increased symptoms. In fact, our discussions usually center around the many positive areas in Mary's life and in working out ways to support her in moving forward. Mary's case is closely coordinated. Both Dr.W. and I always are aware of what the other is working on with Mary. Resources available in the community also have been a factor in Mary's progress. She is pleased to have found a job she can apply for where her experience as a person with a mental illness is not something she has to hide. She is also delighted to be applying for a job that includes training, a paid internship, and the possibility of a career. It is understandable that she felt so discouraged by the few opportunities open to people with severe mental illness (e.g., mailroom or messenger work). All of these factors have helped bring about very positive change for Mary. She has progressed from being a woman who refused to accept that she had a mental illness, who was always at odds with her family and doctors about the direction her life should take and how much medication she should be on, to one who has developed insight into her illness. By working to control the symptoms of her illness, she is learning to take positive control of her life.And by increasing her medication w h e n she experiences an increase in symptoms, she has heightened her ability to tolerate stress and therefore is becoming able to take on more responsibility. This is allowing her to pursue the goals she has defined for herself. Mary has made significant gains over the past few months. Although things are going well now, there undoubtedly will be hard times ahead.Accepting that she has
Ingredients of a Successful Collaboration between a Social Worker and Psychiatrist
85
a mental illness and needs medication remains a difficult concept for her, even with the tremendous insight she has gained. However, because Dr.W. and I work so closely together with Mary and have developed trusting relationships with her, we hope to be able to use these relationships to resolve any future crises before Mary runs away or needs to be hospitalized.To maintain her goals and enable her to attain the goals she has set for herself, Mary needs the continued support of a psychiatrist and case manager who can coordinate her treatment based on her specific needs.
This Page Intentionally Left Blank
Families in Crisis :A Model for the 1990s Linda A. Keller and Gerald M. Arndt
CHAPTER
SUMMARY
In an attempt to provide effective, stabilizing response to families in crisis while addressing the economic imperatives of the current psychiatric care market, the authors and colleagues developed a multidisciplinary, 24-hour intervention model. The program, based at a not-for-profit organization, adheres to a specially developed classification system of four crises types, each with its own triggers. This home-based program tailors its treatment to match each family's situation and each unique catalyst. The Family Response Team (FRT) combines proven treatment models of previous decades with the cognitive-behavioral, solution-oriented approaches of the 1990s. Taking these services to the home provides the team with a comprehensive view of the family system and helps encourage the inclusion and cooperation of reticent or resistant family members. This chapter delineates the underlying philosophy of the FRT program (goal-oriented treatment, working attitudes toward clients) and identifies the practical difficulties encountered in the current clinical-economic climate of managed care.
Psychiatric Home Care: Clinical and Economic Dimensions
Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
87
88
Psychiatric Home Care: Clinical and Economic Dimensions
HISTORICAL THEORETICAL
PERSPECTIVE AND UNDERPINNINGS
In the 1960s the field o f m e n t a l health was influenced by an approach k n o w n as preventive psychiatry. Central to this approach was the idea that f u r t h e r or m o r e severe reactions could be p r e v e n t e d by i n t e r v e n i n g swiftly and o n multiple levels w h e n an individual or family was in crisis. T r e a t m e n t models such as "crisis interv e n t i o n " and " p l a n n e d s h o r t - t e r m t r e a t m e n t " w e r e c o m m o n l y and successfully practiced. It was believed that if o n e did n o t i n t e r v e n e quickly and treat the individual or family in crisis w i t h i n 4 to 6 weeks, the patient(s) w o u l d "seal over" and r e t u r n to a homeostatic state in w h i c h n e w or c o n t i n u e d dysfunction w o u l d be e t c h e d into existing patterns o f behavior. In his b o o k
Principles of Preventive Psychiatry, Gerald
Caplan (1964) w r o t e a b o u t
the i m p o r t a n c e o f swift intervention: We have seen that crisis involves a relatively short period of psychological disequilibrium in a person who confronts a hazardous circumstance that for him constitutes an important problem which he can for the time being neither escape nor solve with his customary problem-solving resources. During the upset, the individual works out a novel way of handling the problem through new sources of strength in himself and in his environment. The upset then abates, and he returns to psychological equilibrium and consistent behavior. The new steady state may be mentally more healthy or mentally less healthy than his pre-crisis pattern. A less healthy state may involve manifest mental disorder or an increased vulnerability to mental disorder. . . . If the external stress has been neither altered nor adjusted to, but merely evaded, it will continue to press on the individual and hamper his freedom. Crisis is v i e w e d as b o t h e m e r g e n c y and opportunity. Individuals and families are m o r e cooperative and accessible to i n t e r v e n t i o n d u r i n g a p e r i o d o f crisis than w h e n h o m e o s t a t i c patterns return. Every crisis presents both an opportunity for psychological growth and the danger of psychological deterioration. It is a way station on a path leading away from or toward mental disorder. The outcome of the crisis depends on the resolution of a complex of conflicting forces during the period of the disequilibrium. Some of the forces originate inside the individual and relate to his personality structure and past biopsychosocial experience. Some of the forces originate in his current environment, particularly in changes in the intensity of the hazardous circumstances and help or hindrance of other people, his family and friends, and those formal and informal care-giving persons to whom he may turn. (Caplan, 1964) In the 1950s and 1960s, family therapy began to e m e r g e on the mental health scene. D u r i n g
this period, Christian
The Family in Psychotherapy, that
Middelfort
(1957)
stated in his b o o k ,
" t h e f a m i l y . . , must be v i e w e d as the unit o f treat-
m e n t " and he w r o t e about the role o f relatives in the care o f psychiatric patients. A r o u n d the same time, N a t h a n A c k e r m a n (1966) suggested considering the family as the unit o f t r e a t m e n t w h e n crisis occurs. B o s z o r m e n y i - N a g y and James F r a m o
Families in Crisis: A Model for the 1990s
89
(1965) were paying particular attention in their writings to the influence of multigenerational family patterns on the dysfunction of individual family members at times of crisis and change. In the 1970s and 1980s, family therapy evolved from an emerging field of study to a regular program component in many hospital and mental health settings. Earlier family therapy pioneers continued to expand their influence, particularly in the use of interventions involving families in crisis. Donald Bloch (1973), director of the Ackerman Institute for Family Therapy, began to focus on the influence of the family on both mental and physical health.Theoreticians and writers such as Peggy Papp (1983), Lynn Hoffman (1981), Betty Carter and Monica McGoldrick (1980), Jay Haley (1976), and Chloe Madanes (1981) added to the knowledge about the multiple influences of the family on individual members during periods of crisis. In his book Turning Points:Treating Families in Transition and Crisis, Frank Pittman (1987) cited studies demonstrating that family crisis therapy is less expensive, quicker, and as effective as psychiatric hospitalization. As the mental health professions came to understand that family members, friends, and others who form the many overlapping systems in an individual's life often produce, exacerbate, or maintain crises and maladaptive coping patterns, techniques were developed for working with entire systems rather than working exclusively with a single identified patient.These models were streamlined and practiced with increasing success during the 1970s and 1980s. H o m e visits were often part of these approaches because they provided a more comprehensive view of the entire system involved in crisis situations. During the 1990s, various economic, social, and political pressures have prompted mental health professionals to develop brief models of intervention that are effective in the short run and serve to prevent recurrent use of the service delivery system.These interventions are marked by prompt response by the treatment team, solution-focused short-term treatment, and time-limited home-based care. In this context, cognitive therapies have become very attractive and influential as a treatment modality. These ideas were introduced and furthered by various practitioners including Beck (1976), Meichenbaum (1977), and Young and Klosko (1993). Cognitive therapy is generally short-term and focused on problem solving. Therapists take an active role in alliance with the client and his or her family. Goals are clearly and concretely delineated. Therapists work with clients to identify distortions in thoughts and underlying beliefs or schemas that may interfere with achieving these goals. H o m e care is often utilized as a means to ensure practice and therapeutic progress. In his Handbook of Cognitive Therapy Techniques, Rian McMullin (1986) describes the conventional principles of therapists as helping clients (1) to find the thoughts,beliefs or schemata that are causing their negative emotions and behaviors. . . . (2) to analyze their thoughts and beliefs,in an effort to assess their validity and usefulness. . . . and(3) to change their irrational beliefs.., to those that are more rational and useful.., because only by changing thoughts do the emotions elicited by those thoughts also change.
90
Psychiatric Home Care: Clinical and Economic Dimensions
D E S C R I P T I O N O F T H E FAMILY R E S P O N S E TEAM APPROACH In an attempt to provide an effective, stabilizing response to individuals and families in crisis, in 1996 the New Learning Center (NLC), a multidisciplinary mental health center in Westport, Connecticut, developed its FtLT approach. Public services of the NLC include individual, couple and family therapy; a 24-hour response team for families in crisis; psychotherapy, psychoeducational, support, and wellness groups; specialized consultations around issues of marriage and divorce; and community education programs. Its professional services include supervisory and training services tailored to agency or individual professional needs; professional workshops and ongoing study groups; education and training for teachers and other school personnel; exam preparation for marriage and family therapists; and support and wellness groups for practicing therapists. Its catchment area ranges from highend suburbs to one of Connecticut's poorest cities, and its clientele reflects the full socioeconomic spectrum. The NLC staff is composed of psychologists, clinical social workers, marriage and family therapists, and substance abuse counselors, with two psychiatrists available on a consulting basis. The NLC has served as an internship location for master's-level graduate students in both social work and marriage and family therapy. The economic challenges facing those providing health care services in the era of cost containment and managed care are daunting.A "given" in this environment is that work must be brief and solution-focused. The emphasis is on cost containment and cost-effective ways of providing servicesmincluding phone sessions, "mini-sessions," and group treatment for longer term support. Meanwhile, insurers and HMOs are requiring licensing and increased levels of certifying specialization of providers, often making trainees and supervisees, the traditional sources of lower cost service, ineligible to provide services. Requirements for licensing are frequently irrelevant to service needs. Thus, certain insurers might not recognize substance abuse counselors, for example, even when this background might be most relevant and cost-effective in providing service. The NLC has tried to develop services that are geared to the managed care environment but also can operate outside of managed care and third-party payment. The emphasis is on developing highly specialized programs offering time-limited services, of which the F1LT is a prime example. The F1LT incorporates the short-term treatment and preventive psychiatry theory and techniques of the 1960s, family and social network techniques so strongly advocated in the 1970s and 1980s, and many of the efficient cognitive and solution-oriented approaches of the 1990s. The goals of the F1LT involve containing escalating behaviors or emotional problems that might result in initial hospitalization or residential placement and working with individuals after inpatient
Families in Crisis: A Model for the 1990s
91
treatment. There is a strong focus on ensuring a dependable support system for recovery and preventing "revolving door" rehospitalization. The FRT approach is based on the belief that a stable, cooperative family environment can maximize the effectiveness of brief, solution-oriented outpatient treatment; increase patient compliance with medication treatment, plan assignments, and discharge planning; respond effectively to setbacks; and avoid recurrence of counterproductive patterns of behavior. FRT is a network of cliniciansmincluding psychologists, clinical social workers, marriage and family therapists, and drug and alcohol counselors--all duly licensed by the state. Psychiatric backup is available on an as-needed basis. One member of the team is "on call" on a 24-hour rotating basis for 1 week at a time. Team efforts are regularly supervised by a senior evaluating clinician who is designated an approved supervisor by the American Association for Marriage and Family Therapy. In addition, all interventions and treatment plans are reviewed by an N L C senior supervisor, responsible for the overall F1LT program. The work of the FRT is based on three assumptions: (a) the need to intervene as quickly as possible with a multidisciplinary team, (b) the need for an assessment and treatment plan to address the entire family system, and (c) the need to implement the work in a maximum 30-day time flame in order to take advantage of the period in which the family is most open to intervention. Calls are taken 24 hours a day, 7 days a week. After gathering basic information over the telephone, determination is made as to how soon the family needs to be seen. Many crises increase the level of family disorganization, and it is difficult and unlikely that under these circumstances an entire family will find its way to a clinician's office quickly and easily. Because of this, home visits can be often essential in responding to such families. H o m e visits ensure the opportunity to meet with the full network and provide on-site observation often missed in a clinic setting. Meeting with families on their home turf can offer the opportunity to include reticent family members or individuals who would otherwise insist that the problem belongs to only one individual. The home visit also helps to set a tone of respect for and interest in the family's attempts to create a productive lifestyle, thus beginning the intervention process in a manner that discourages dependence on the team and encourages a sense of promise and self-belief. The F R T protocol calls for two assessment sessions, usually 1.5 hours each, followed by a 1-hour feedback session at which treatment goals and strategies are fully explained to the family and their input and cooperation solicited.After the feedback session, the family is given a written copy of all agreements and plans. The first assessment session takes place in the family residence when circumstances warrant a home visit. Whenever possible, the second session takes place at the NLC and, with the family's permission, is videotaped. Should it be determined
92
Psychiatric Home Care: Clinical and Economic Dimensions
that other members of the F1KT staff ought be included in the treatment plan, they will have an opportunity to view the second part of the assessment process on video to gain a deeper understanding of family dynamics. W h e n a family member or referral source first makes contact with the NLC, it is important to determine certain basic information over the phone for three reasons: (a) to engage other resources that may be necessary to appropriately respond to the crisis situation (i.e., clergy, medical professionals, or other F1KT specialists); (b) to ascertain any level of violence that may be present in deciding whether a home visit is a safe choice for the FRT clinician or if it will be necessary to include a police officer in the process or move the meeting to a more structured setting; and (c) to familiarize the clinician with the family situation so he or she can demonstrate potential helpfulness, reduce guilt, relieve tension, and communicate confidence in the family's ability to work on the problem from the very outset. A m o n g the questions asked before the actual visit are the following: 9 Tell us about the situation that prompted your call. 9 Was there a particular incident you feel is important for us to know about? 9 W h o is involved in the situation? 9 What have you tried to do to improve things? 9 H o w have these efforts been useful? 9 Beyond what you have told us so far, have there been suicide attempts, abuse, or any threat of harm to someone? The F1KT assessment and treatment plan model flows from a family systems brief therapy model. It requires an accurate diagnostic evaluation of observable symptoms and their function in the family system, reports by family members as to the nature of the crisis, precipitating factors, as well as family structure issues, repetitive patterns, or developmental stages that may be relevant to the crisis. The team members develop a three-generation genogram, enabling a visual overview of this family's historical functioning patterns, including as much data as possible on the following: 9 Family members and their ages 9 Births, deaths, adoptions, terminated pregnancies, foster children 9 Divorces, annulments, current and previous marriages 9 Relationship descriptions (i.e., close, distant, conflicted, etc.) 9 Hierarchical structure (power coalitions, boundaries, etc.) 9 Parenting styles (authoritarian, affectionate, passive, etc.) 9 Group identities (ethnicity, race, religion, gender, socioeconomic levels, etc.) 9 Special identities (nicknames, roles, birthrights, etc.) 9 Use of substances 9 Family secrets 9 Education, goals, accomplishments
Families in Crisis: A Model for the 1990s
93
Another important evaluation instrument is a timeline covering events for the family over the last 5 years. The team member attempts to elicit data about the following important events: 9 Birth, deaths, adoptions, ended pregnancies 9Job changes,job or business losses, new business ventures 9 Changes in living situations or locations 9 Marriages, divorces, annulments, separations, terminated relationships, or estrangements of any kind 9 Illnesses, surgeries, hospitalizations 9 Educational achievements or milestones 9 Financial and other lifestyle changes The initial contact at the home is both therapeutic and exploratory. The team member operates in a simple, supportive manner that helps counteract feelings of helplessness and communicates a belief that this family can begin to pool its resources toward positive change. It is important from the very beginning to take an approach similar to that described by Howard Parad (1965) that will awaken the family's growth-producing capacities. In the relationship-building initial interview, the worker must communicate confidence in the client's ability to deal with the problem. In so doing, he implicitly offers the positive contagion of hope as a kind ofmaturational dynamic to counteract feelings of helplessness and hopelessness generally associated with the first stages of stress impact. After the initial assessment, treatment plans are developed using a problemfocused approach, and delineating measurable and observable goals. For some families, the assessment and feedback sessions offer sufficient direction and clarity for the family to proceed on their own without further treatment. For others, occasional family visits over the 30-day treatment period may be enough to implement change, while more frequent contact may be necessary in other cases. There may also be a need to involve further FRT specialists or to engage various community resources to help families handle their problems more effectively. In some families, medical, legal, or law-enforcement services may also have to be included. The FRT implements treatment over the 30-day period from the perspective that change is achievable and that the family has resources it may not have utilized in the past. Borrowing from the work of Steven deShazer (1985) on brief therapy, the FRT looks for specific and workable solutions. It asks questions such as,"If tomorrow morning this family could believe that everything was okay, what would things look like and/or what would be happening differently? What would others and/or the FRT members notice about this family's behavior that would give them the idea that things were better?"The focus is on establishing achievable, behavioral goals that are agreeable to all concerned.
94
PsychiatricHome Care: Clinical and Economic Dimensions
C A S E S T U D I E S A N D T H E N A T U R E OF C R I S I S Parad (1965) describes a crisis as follows: Crisis consists of a hazardous circumstance or stress which constitutes a threat for individuals and families because (a) the stress jeopardizes important life goals such as health, security, and affectional ties, and (b) the problems posed cannot be immediately solved by the immediate resources of the ego, thereby generating a high level of uncertainty, anxiety, and tension . . . . In bare outline, this theory postulates that a person, or a family, is in crisis when his internal equilibrium is off balance and his psychological resources overtaxed, thus making him vulnerable to further breakdown.
Although we find this definition accurate in general, it seems to depict a crisis as a single, discrete episode in the life of an individual or family.We would like to suggest a taxonomy developed by Linda Keller of four different types of crises, each with different trigger mechanisms: (a) the situational crisis with a single trigger, (b) the life-cycle crisis with a developmental trigger, (c) the repetitive crisis with a revolving trigger, and (d) the stockpile crisis with multiple triggers. The following pages offer examples of each crisis type, illustrated with the interventions employed by the FR.T.These cases are composites from NLC files, with details changed to ensure confidentiality.
The Situational Crisis The situational crisis is usually triggered by a single event that proves overwhelming. Examples of such crises are a death in the family, sudden illness, suicide, a single incident of abuse, or the unveiling of infidelity or some other powerful family secret.
Case Example of Mrs. J Mrs.J called the NLC in an agitated state. She had discovered that her husband was having an affair with his employer. She had confronted him with the situation and had demanded that he leave his job. He said he would end the affair but would not leave his job because tough economic times indicated to him that he would not be able to find another. Mrs. J reported that she was not eating or sleeping and had been verbally abusive with the children when they were difficult. She was planning to leave her husband. One FRT therapist initiated brief couple's treatment while a second therapist worked with Mrs.J to help her stabilize her daily life and improve relationships with the children. Home visits were particularly useful in helping Mrs. J develop new and more effective parenting skills. The couple was able to reexamine expectations for marriage and to move in new and promising directions.At this writing, they are still together and feel they have created a stronger bond than they had before.
Families in Crisis: A Model for the 1990s
95
The Life-Cycle Crisis The life-cycle crisis occurs as a result of an individual member or the family as a unit advancing to a new plateau in which family functioning appears to be disrupted. The developmental trigger in this crisis becomes visible as the family discovers it is no longer working productively. This trigger erupts w h e n the family's previous resources and coping skills, which were effective at other points in the life cycle, are no longer successful, and the family finds itself unable to harness the energies and skills required for current transitional demands. Some examples are the arrival of a new child, adolescent acting-out behavior, an elderly family member newly absorbed into the household, midlife crisis, adjusting to a postretirement lifestyle, or the inclusion of new family members through marriage or other means.
Case Example of Mrs. B Mrs. B, a 72-year-old divorcee, lived in her family home of 30 years with the youngest of her three children, a 26-year-old son with a history of emotional instability and aggressive behavior. The house was now too large for her to manage and she felt it was time for her son to begin living on his own. However, she had been afraid even to discuss the issue with him, although it had been on her mind for more than a year.At the time of contact, a local elderly housing unit that totally suited her needs had become available, but she had only 1 month to make arrangements for the sale of her old house and purchase of the new quarters. She began to experience panic attacks several times a day and was too frightened to talk to her son or begin the tasks required to put her house in order. The FRT worker visited the home and helped mother and son engage in constructive dialogue about Mrs. B's need to make this change. Community resources were engaged to help both mother and son find and move into new quarters. Short-term family treatment helped them to solve the situation and improve their relationship. Mrs. B's panic attacks subsided.
The Repetitive Crisis The repetitive crisis has a revolving trigger.These events can be repeated over time, especially w h e n there has been no successful interventive treatment.These crises frequently occur when a member of a household has a chronic diagnosis or addictive pattern that surfaces in a maladaptive manner. We see repetitive crises in families with substance abuse, in ongoing abusive relationships, and with psychiatric diagnoses where the identified patient has misused or ceased taking medication or where family behavior has exacerbated his or her symptoms.
96
Psychiatric Home Care: Clinical and Economic Dimensions
Case Example of Diana The FtLT was alerted to the situation of Diana, a 34-year-old single woman with a history of depression, self-abuse, and suicidal ideation. A friend called, deeply concerned because Diana was isolating herself once more and talking about suicide. Diana had no funds to pay for treatment and was estranged from both her parents. The FRT worker helped the concerned friend involve some other friends in a plan to approach Diana, encourage her to attempt treatment once again, and give her ongoing support. There were three home visits, after which Diana gave the worker permission to contact her mother, who had been unaware that her daughter had returned to a deeply disturbed state. A family therapy session was scheduled. At the session, it was determined that outpatient therapy would not be sufficient; Diana had need of inpatient treatment. She agreed to hospitalization, and her mother agreed to arrange for financial coverage. Arrangements were made for the establishment of support systems when Diana was discharged.
The Stockpile Crisis The stockpile crisis has multiple triggers.This crisis becomes visible only after a series of stressors are compounded one upon the other.At this juncture, the family or individual has become unable to solve problems or to adjust to the level of stress. We see stockpile crises at work in times of financial stress, during serious illness, and in multiproblem families.
Case Example of Mrs. W Mrs.W, age 59, called about a family situation with multiple issues. One of her three grown children had quit his job and moved back home, exhibiting uncooperative and inconsiderate behavior. Her husband, age 65, a newly retired executive, had returned to a previous pattern of alcoholism, and was now sullen and verbally abusive on a daily basis. Because he had been physically abusive in the past, she was frightened and worked late at her job to avoid spending time at home. M r . W was angry that she was not home more often. Their daughter's wedding was 1 month away, and M r . W was taking issue with most of the wedding plans and threatening not to attend.As a result, their daughter was threatening to call offthe affair and elope.The third child, who lived in another state, was protecting himself by staying out of contact. Because this son had a long-established seizure disorder, M r s . W was alarmed at not hearing from him over long periods of time. Mrs.W was also complaining of sleeplessness and stomach pains. The FP,T worker immediately began working with the couple. An alcoholism counselor was involved by the second session. M r . W agreed to go to AA meetings,
Families in Crisis: A M o d e l for the 1990s
97
and Mrs.W agreed to be home more often.As the couple's therapy progressed, two brief family sessions were held with the wedding couple, and the disagreements were negotiated. Family therapy was extended to include the newly returned son and, with the couple better able to take on a parenting role again, new systems and boundaries were established for coexistence at home. Contact was resumed with the third child, and Mr.W. developed some new postretirement activities that allowed him to feel productive. Each of these crises was effectively dissipated by immediate intervention with the entire family, employing a measured, short-term, solution-focused approach that necessarily varies from family to family. Coming from a theoretical perspective that has evolved within the field of mental health during the last three decades, the approach of the FRT is strongly based in the past, the present, and the future. The FRT applauds the past efforts of each family in crisis, helping them to discover which previous attempts at solutions contain strengths that may continue to be useful.The team respects and accepts the family system at its present level of functioning, often working with families on their home turf to lessen any immediate danger, to help them recognize and harness existing capabilities for change, and to assist them in developing new ones. In addition, the FRT works to trigger a sense of hope by helping families look toward the future, develop skills that will prevent further crises, and prevent overuse of mental health services.
REFERENCES Ackerman, N. W. (1966). Treating the troubledfamily. NewYork: Basic Books. Beck, A. T. (1976). Cognitive therapy and the emotional disorders. NewYork: New American Library. Bloch, D. A. (Ed.), (1973). Techniques offamily psychotherapy:A primer. NewYork: Grune & Stratton. Boszormenyi-Nagy, I., & Framo, J. L. (1965). Intensive family therapy: Theoretical and practical aspects. New York: Harper & Row. Boszormenyi-Nagy, I., & Spark, G. M. (1973). Invisible loyalties: Reciprocity in intergenerationalfamily therapy. NewYork: Harper & Row. Caplan, G. (1964). Principles of preventive psychiatry. NewYork: Basic Books. Carter, B., & McGoldrick, M. (1980). Thefamily life cycle:Aframeworkforfamily therapy. NewYork: Gardner. deShazer, S. (1985) Keys to solutions in brief therapy. NewYork:W.. W.. Norton. Haley, J. (1976). Problem-solving therapy: New strategiesfor effectivefamily therapy. San Francisco: Jossey-Bass. Hoffman, L. (1981). Foundations offamily therapy. NewYork: Basic Books. Madanes, C. (1981). Strategicfamily therapy. San Francisco: Jossey-Bass. McMullin, R. E. (1986) Handbook of cognitive therapy techniques. NewYork.W.W. Norton. Meichenbaum, D. (1977). Cognitive-behavioral modification:An integrative approach. NewYork: Plenum. Middelfort, C. E (1957) The family in psychotherapy. NewYork: McGraw-Hill. Papp, E (1983). The process of change. NewYork: Guilford Press. Parad, H.J. (Ed.). (1965). Crisis intervention: Selected readings. New York: Family Service Association of America. Pittman, E S. (1987). Turning points:Treating families in transition and crisis. NewYork:W. W. Norton. Young, J. E., & Klosko, J. S. (1993). Reinventing your life. NewYork: Penguin Books.
This Page Intentionally Left Blank
From Hospital-at-Home to
Community Living:The Family'sJourney Glynn Rudich and Carla Daichman
CHAPTER
SUMMARY
Caring for an adult whose functioning is impaired as a result of a major mental illness requires a broad range of services and supports.When the services are not available, many families or friends attempt to provide care on their own by setting up hospitals and aftercare units in their homes. This chapter examines informal at-home care and its costs to and burdens on the family by recounting the journeys of four families who sought assistance from a professionally led support group. This is the sto W of how these families moved from having a "hospital at home" to securing community living services for their adult children. It is a saga of recovery for the family as well as for the patient.
FAMILIES AS C A R E G I V E R S It has become official policy in nearly every state in the country to move the locus of care for the person with a severe and persistent mental illness to the community and reduce utilization of inpatient facilities. This move began decades ago with the advent of the first neuroleptics and has continued variably through Psychiatric Home Care: Clinical and Economic Dimensions Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
99
100
PsychiatricHome Care: Clinical and Economic Dimensions
periods of increasing and decreasing attention to community resources.As we witness significant advances in medication efficacy in the 1990s, the community focus seems more justified than ever. It is ironic that despite these strides in psychopharmacology there are not significantly more resources available for psychosocial rehabilitation, suitable housing for the patient, and support for the family. There has been a tendency in the United States to hold families responsible for the mental illness of their children (Bateson, 1956; Fromm-Reichmann, 1948; Simon, McNeil, Franklin, & Cooperman, 1991).According to these theories, which have diminished in popularity, the prescribed intervention was often the removal of the adult child from the family. Recently, due to the prevalence of more effective antipsychotic agents and changes in the economic profile of health care, the family's role as change agent has returned to center stage. In fact, in the past 20 years the focus has shifted to interventions that attempt to alter the environment within the family so that treatment and recovery can occur while the ill adult child remains in the home (Left, Kuipers, Berkowitz, EberleinVries, & Sturgeon, 1982). The interventions of professionals vis-~-vis family members have been directed primarily toward the relief of symptoms of the illness, the postponement of relapse and rehospitalization, and the creation of less stressful environments for the person with psychiatric illness. Interventions such as the multiple family group and other group psychoeducational formats are widely used to reduce the incidence of relapse and hospital recidivism (McFarlane, 1994; McFarlane, Link, Dushay, Marchal, & Crilly, 1995;Winefield & Harvey, 1995; Xiong et al., 1994). Although the burden on families, namely parents, has been researched and documented for many years (Maurin & Boyd, 1990) and there have been efforts to calculate the economic and social costs of mental illness (Franks, 1990; Hatfield, 1978; Terkelsen & Menikoff, 1995 ;Wasylenki, 1994), there has been little attention to how the specific needs of parents can be addressed (Winefield & Harvey, 1995). Parents of the severely mentally ill face a daunting task in caring for their children. The chronicity and severity of the illness can be devastating to the family. Among the unintended consequences of the move from long-term or intermediate-term hospital care has been the conversion of homes to mini-hospitals.As caregivers, parents often face a lifetime of involvement with the problems associated with mental illness (Hatfield, 1978; Howard, 1994). Families provide room and board for their ill children, call psychiatrists during periods of crises, sit suicide watch, and function as clinical support teams and rehabilitation specialists.They become the de facto discharge planners and virtual case managers. In these circumstances, parents need to become experts in pharmacological advances and remain current about changing theories and availability of psychosocial rehabilitation. Where peer supports and close professional guidance are in limited supply, families often fail to gain valuable information about the life course of these illnesses and those factors that can best contribute to recovery. This relocation of care from hospital to home has tremendous economic, psychological, and even medical consequences for families who undertake this task.
From Hospital-at-Home to Community Living: The Family'sJourney
101
Mental illness in one family member is liable to have an impact on every aspect of a family's life.Work and income, leisure time, personal health, and relationships with friends, neighbors, colleagues, and even extended family may be affected. Careers may have to be put on hold or abandoned (most often by the mothers), and family members may be forced to forego more lucrative or challenging employment in order to function as a homebound caregiver. Even the family's practice of religion may be affected, frequently negatively. Social isolation, retreat from recreational activities, and avoidance of family celebrations are not uncommon. Marital discord and family conflict may increase dramatically, and siblings as well as parents may manifest fears, difficulties in functioning, and significant grief reactions that can require psychological counseling or medical attention (Landreen et al., 1992; Miller, Dworkin,Ward, & Barone, 1990; ILiebschleger, 1991). Depression, alcohol abuse, and chronic medical conditions that result from stress are prevalent in these families (Noh & Turner, 1987). Families taking care of a member who is mentally ill require all their energy to manage the frequent crises associated with these illnesses. They sometimes appear frozen or stopped in time at the onset of their child's illness. Frequently, a family member, or the entire family, becomes developmentally arrested at that point in time and will experience difficulty in moving forward to master the appropriate developmental tasks of adulthood and aging (McGoldrick & Carter, 1988). It is ironic that suspension of significant life tasks on the part of the family does little to further the patient's recovery. The following pages recount how several families moved from a time in which they put their lives on hold to care for their ill child at home, to a period of their own "recovery," and into a phase in which they mobilized to secure suitable services for their adult child outside of the home.
O R I G I N S OF A P A R E N T S U P P O R T G R O U P In 1988, two families whose adult children were members of a therapy group in a day treatment program approached the group leader about their own need to talk about what was happening to their children.They were looking for an environment in which they would feel safe, be able to obtain information, and could meet with other parents in similar situations. Shortly thereafter, with the addition of two other family units referred by psychiatrists in the community, a professionally led parent support group was formed. The group leader and a colleague, social workers with many years of experience in both inpatient and outpatient settings,joined forces to conduct this support group. The founding members had previously participated in multiple family groups, a leaderless self-help group, family education programs, and inpatient family groups. A common need was to have a more intimate, open-ended setting where they could share their experiences with fellow caregivers and learn about resources, without
102
PsychiatricHome Care: Clinical and Economic Dimensions
their children present.Although their needs for support, education, a safe haven, and professional leadership may have been addressed in other group formats, it is the position of the authors that these goals are not always adequately addressed in models currently in use: the multiple-family group (Marley, 1992;Terkelsen, 1983,Toseland, tLossiter, & Labrecque, 1989), the purely psychoeducational group model (Anderson, Hogarty, & Reiss, 1981; Anderson, tLeiss, & Hogarty, 1986; Falloon, Boyd, & McGill, 1984; McFarlane et al., 1995), or the leaderless self-help group, which often takes on a strong advocacy role (Hatfield, 1981; Spaniol, Zipple, & Lockwood, 1992). The group leaders understood that guilt and the sense of failure as parents could best be addressed in parent-only settings (Terkelsen, 1983). In addition, the expression of grief and mourning would be more likely in a group without the presence of their ill children. The parent support group, still in existence, meets twice monthly. Attendance, while initially more consistent from the mothers in the group, evened out as fathers attended more frequently. Almost without exception, each family is represented at every meeting. The group members have paid for group sessions from their own funds because insurance reimbursement has generally not been available for such services. Although the membership has varied to some extent throughout the 10 years of the group's existence, three of the four original families have continued.At no time have the ill children of these parents been seen in the group setting, although some of the children were previously known to the group leaders.At several points during the group's history, siblings of the ill children have been seen in group meetings without the parents in attendance. These sibling meetings were intentionally infrequent, with no regular pattern. The leaders believe that it is crucial not to wear out the availability and involvement of these future caregivers. On occasion, a patient's sibling has directly called on the leaders to discuss issues of concern about a patient or a parent.
T H E LIFE OF T H E G R O U P In retrospect, the leaders have identified the group as passing through three phases: 9 Phase I: Initially the parents showed a minimal understanding of their children's illness and harbored the fantasy that they could somehow "fix" the situation. Consequently, this phase was largely devoted to education. On a process level, members began to bond and to trust one another. 9 Phase II: Next, the parents began the process of acknowledging both the chronic nature of these illnesses and the prospects for recovery. Phase II has been identified as the beginning of the "recovery" period as much for the family as for the patient. During this phase the families began to resume their own lives as the patient became engaged in suitable activities beyond the home.
From Hospital-at-Home to Community Living: The Family'sJourney
103
9 Phase III: In the third phase, the patient has moved out of the house and the family has also recovered the tasks normally associated with their respective stages in the life cycle.The adult children begin to build lives of their own, and the family faces new challenges in light of this increased independence.
Phase One: Breaking the Isolation
Group Profile In the first stage of the group, it was typical for all the adult children with a mental illness to be living at home with their parents. Some of the children had already been hospitalized once or more at a variety of psychiatric facilities, with lengths of stay ranging from several weeks to more than a year. Some patients had never been hospitalized. Generally the adult children were being seen by psychiatrists once weekly in the office for some form of psychotherapy and medication. Most were being treated with standard neuroleptics, but none was being treated optimally and compliance varied enormously. Diagnoses, which ranged from schizophrenia to schizoaffective illness to bipolar disorder, were somewhat more definitive for those children who had been in hospitals, but most families and patients did not have a solid understanding of the facts about psychiatric illness. Three of the adult children had attended day hospitals with limited success. Patients were often flagrantly psychotic, actively delusional, and generally unable to work or perform sustained activity of any sort. One patient, however, was attending college. Prior to the start of the group, all of the adult children had lived independently of their families in less than desirable situations. Nearly all of the families had endured the experience of having to "bail out" their children, bring them home, or have them hospitalized after failed attempts at independent living.The adult children varied in their capacity for socialization; some were isolated to the point of being reclusive, while others socialized inappropriately or engaged in high-risk behaviors, including substance abuse. None of them accepted their psychiatric diagnoses and the consequent impairing effect on their lives. When the group began, each family was running a"hospital-at-home."All of the parents were functioning as untrained psychiatric case managers and 24-hour-a-day caregivers to their ill adult children. Over the course of the first several years, members of the group confronted their children's diagnoses, often seeking psychiatric opinions beyond the initial hospital diagnosis. For families whose children had not been hospitalized before the group's formation, the need for inpatient evaluation became a focus of discussion and concern. Fear of psychiatric hospitalization (by both family and patient), inability to accept the severity of the illness, and the need for parents to "fix" the damaged child on their own were all contributing factors to the establishment of these "hospital-at-home" situations. Group members whose children had
104
PsychiatricHome Care: Clinical and Economic Dimensions
been hospitalized provided support and information, as did the group leaders. Parents were relieved not to have to "figure out" on their own how to locate quality psychiatric help. Members shared their perceptions that professionals, including psychiatrists who were treating their children, frequently become impatient and frustrated with the lack or quality of community resources and had encouraged them to continue to provide in-home care, without fully comprehending the intense burden it placed upon the family. On occasion, psychiatrists had actively engaged parents as members of the treatment team.Work with patients who have ongoing psychiatric disorders is most effective when tackled by an interdisciplinary team; however, in lieu of this, an isolated therapist might welcome the company and even participation of savvy, eager parents. Rather than seeking hospitalization during major changes in medication, for example, parents were put in the position of managing full-blown psychotic episodes in the home while they waited for a new medication to "kick in." (Note that the group's inception was prior to the era of stringent inpatient limits imposed by managed care programs.) In general, parents commiserated about the unavailability of the treating psychiatrist.This was expressed in terms of limited contact, lack of time, of feeling in the dark because of the confidentiality constraints many therapists feel when discussing an adult patient's situation with the parents. As veterans of these wars, some members of the group shared their experiences about particular doctors and hospitals with those group members who were less assertive and overwhelmed. When necessary, group leaders intervened with treating professionals, encouraging them to be more "family-friendly." Parents, usually mothers, expressed concern that the psychiatrist labeled them as difficult if they were too questioning.When primary therapists were reluctant to communicate directly with a parent, the leaders and group members devised practical strategies that would not compromise the doctor-patient relationship. For example, parents were coached to leave detailed messages on the therapist's answering machine, with the preface: "You don't need to return this call, but I just wanted you to know t h a t . . . ," to be followed by a concise description of the patient's current situation or symptoms. One of the more insidious stressors experience d by the families in the hospitalat-home situation was the lack of opportunity to "let off some steam," to give vent to the tremendous frustrations and disappointments associated with mental illnesses. As one parent told the group,"It's a relief to say these things.At home I can never show my son how I feel." Another parent echoed with, "I have to hold myself in. I'm getting an ulcer." Marital stress was addressed by the mother who said, "I have to wait to have fights with my husband when we're driving alone in the car." The parent who is managing a psychiatric patient at home must contend with reverse sleep cycles--the patient may sleep all day and be awake during the night. This threatens the family's need for a regular routine. However, when hearing about this problem with someone else's child, group members began to explore some of
From Hospital-at-Home to Community Living: The Family's Journey
105
these irregularities together, confronting the realities of their situation within the supportive environs of the group. Family members who live with a relative who may be "at the edge of psychosis all the time," share frightening and even amusing anecdotes. Such black humor often provides essential relief. Group members talk about the need to "recharge their batteries" when they are feeling burned out after a succession of crises. Generally, this kind of sharing has not been possible with friends or even extended family members. In the hospital-at-home experience, the child's deficits are constantly in focus, and feelings of guilt, responsibility, and dashed hopes for the child are ever-present. Parents lack freedom from the child and worry that the dependency that develops during a chronic illness will impair the child's ability to become more self-sufficient and eventually leave home.Yet parents express the feeling that it is unnatural to push a sick child away, and consequently will not seek hospitalization or community residential care despite how drained and overwhelmed they are.The parent who has an ill child at home has no distance, not even the "24 inches" that one parent begged for from an ill and dependent adult child. Worries emerge that having the child at home is affecting or damaging the marital relationship or that siblings will be adversely affected. Living with constant fear or in a state of crisis is not healthy for other family members. One mother expressed her ultimate fear that one of her younger children would come home one day to find the older, ill sibling dead. Consequently she arranged her life so that she was always the first person in the door at the end of each day. However, parents often stated that it felt better to have the child at home and to live with these worries than to be concerned about what kind of care the child might receive at the hands of strangers in residential and aftercare programs. In the beginning stage of a group's development, parents find support in hearing one another's feelings of fear, loss, and of being overwhelmed. " O u r children have been kidnapped or taken away," is how one parent described the personalitytransforming aspects of mental illness. During this period, the family moves out of isolation and realizes they need no longer struggle alone without the professional support and peer support they require. Group members soon begin to relax among those who have shared similar situations.They understand both the spoken and unspoken because they have all been down similar paths. One can even see some"group vocabulary" develop, a jargon or shorthand understood only by the group members. Parents who manage psychiatric illness at home may be seen by others as sacrificing their lives, martyring themselves. Group members talk about the wish to give their lives in exchange for the health of their children. For some, it can take many years to realize that what results is a sacrifice, namely the loss of the parent as an effective caregiver. Parents often feel proud of themselves for managing their child's illness in the home environment. One parent told the group " . . . we took her in and ran what one psychiatrist ultimately referred to as a mental hospital at home. We did this for about 5 years in all and managed to keep her out of the hospital for all that time."
106
Psychiatric Home Care: Clinical and Economic Dimensions
W h e n parents themselves are mental health professionals or have experience in allied fields, they may take on home-care responsibilities only to find themselves "burned-out" or feeling helpless despite their professional expertise. Such parents may be in denial about the severity of their child's illness. Creating a semblance of normalcy while providing all aspects of home care may contribute to a failure to seek appropriate professional intervention. Providing a home situation that avoids the diagnosis of the illness also postpones the recovery process. Through the process of sharing with peers, group members achieve some distance from the illness and begin to regain confidence in their parenting abilities. This step is vital to their own self-esteem and a prerequisite in assisting their children along the road to recovery. Ongoing education about the neurobiological origins of psychiatric illnesses is an essential step in the early stages of a support group. Accurate information helps parents address the guilt that they naturally assume. Parents need to be reassured that although these illnesses are chronic in nature, recovery is indeed possible (Harding & Brooks, 1984; Harding, Strauss, & Zubin, 1987).The ability to move beyond the crises, to understand the life course of the illness, and to accept the chronicity inherent in the illnesses ultimately allows parents to address other concerns in their lives, including their own economic, social, and medical issues. In the group, it is possible to acknowledge omnipotent fantasies about reversing the course of mental illness through intensive in-home care and involvement with the ill child. Group members may challenge each other: "Do you feel responsible for her problems?" Parents may say, as one father did, " W h e n we realized that our son was schizophrenic we understood intellectually that it wasn't our fault, but emotionally either we were in denial that he was sick or we felt somehow totally responsible for it. We felt very a l o n e . . , really very much at sea." Another parent responds: "We did play hospital at h o m e . . , for a year or two after our son was diagnosed with schizophrenia. The reality of it was that we couldn't do it alone and really didn't know where we were going." During phase one of the group the parents begin to break their isolationmand set the stage for their ill relative to do the same.
Phase Two: The Family's "Recovery" As parents begin to understand the nature of the illness, they recognize that their feelings of guilt are unwarranted. Not coincidentally, the patient takes some steps toward fuller engagement in services outside the home.
Group Profile In this phase, the adult children typically met with a psychiatrist regularly, although generally not the one engaged initially by the family. Each patient was now taking
From Hospital-at-Home to Community Living: The Family's Journey
107
clozapine, which had just become available on an outpatient basis. Problems with medication compliance diminished dramatically. Day treatment programs were employed by several families, and one by one the adult children moved into supervised living situations. One patient lived with extended family for a period of time before a hospitalization that led to a referral to a residential setting out of state.Another patient moved to a halfway house. Rehospitalizations were becoming less frequent and briefer as patients made gains on new medications and in new programs. The parents begin to derive support from one another, not just with regard to their children's circumstances but also in terms of resuming their own lives. They derived strength from hearing about one another's accomplishments in terms of work or simply getting away from it all. They achieved some distance from the "monster," as one parent so aptly labeled her child's illness. And, finally, parents learned to use their own resources more effectively, to tap the resources of the other group members, and to utilize the expertise of the group leaders to find viable alternatives to in-home care. In phase two, group members encourage one another to take steps to attend to their own needs. Recognizing that they may be depressed, some may seek outside professional help for themselves, in the form of psychotherapy or medication or both. Others seek help in combating their own problems with alcohol use, which may have appeared or increased insidiously in an attempt to cope through self-medication. During this phase the group coalesces. By the end of phase two, the group has become a significant support.As one father eloquently stated,"It's very hard for anyone to know the grieving, the pain, the frustration, the powerlessness that you go through unless you've experienced it." Parents generally regard the support group as a healing experience that allows them to face the sorrow they feel because of their children's situations. During the early stages of the group when crises were more of a daily occurrence, there was little time or distance to grieve for what has been lost; parents were simply too caught up in the daily struggle of finding doctors, hospitals, medications, and managing psychotic behavior in the home. It is during the early stages of the patient's recovery that parents begin to share their sorrow. Grief and mourning are expressed periodically, but most poignantly when the child is doing well or has reached a plateau. At these times, the parents mourn the loss of their long-held dreams and hopes for their child. Inevitably comparisons are made with healthy peers, which highlight glaring social deficits. Group members share their deep sorrow that their children may never experience intimacy in relationships, marriage, or children of their own. Such discussions among group members are an important part of the recovery process. In the safety of the group, it is possible for families to talk candidly about dreams, frustrated anxieties about the future, even angry fantasies, ideas, and experiences that they cannot share with anyone outside the group. As one parent put it, the group "permits me to say whatever I feel like saying without any kind of embarrassment. It took me a long time to say,'Hey, you got a sick kid.' Being with them [the group members] has given me the strength to face it on a daily basis."
108
Psychiatric Home Care: Clinical and Economic Dimensions
Despite the increasing physical distance from their children, these parents do not cease feeling deep sorrow.As one member so movingly expressed it,"Our hearts are broken and they won't be fixed." However, parents do begin to move on in life, as ultimately the ill family member must also move on to fuller functioning despite the continued presence of a chronic illness.With the support of the group, parents become able to resume long forsaken activities, including meaningful work. Members give one another permission to take vacations or care for themselves in some way. As parents recover, they begin to realize that self-sacrifice is not a solution to their child's illness. In fact, one parent, who became seriously ill herself, talked about how her illness allowed her to back off from her daughter and attend to her own personal needs. Parents may see the importance of taking something for themselves in order to give to their children in another way. Eventually, parents realize that in order to be effective caregivers for their children they must not neglect themselves. This enhances their strength (psychologically as well as physically) and serves as a self-care model for their children. By the end of phase two, parents have learned that psychosis that goes untreated or undertreated gets progressively worse.The longer parents attempt to compensate for their child's impairments in functioning, the longer they postpone the day when their child will take responsibility for himself or herself. Parents who have attempted to play the dual role of parent and service provider without outside help have inevitably faltered. They typically become more despondent as they realize the seriousness and chronicity of their child's illness and how much valuable treatment time may have been lost. The support group provides models of parents who are able to "take up (their) own lives and feel some escape from the tragedy." The group gives permission to its members to close the hospital at home and to move on with life. Taking the lead from the family, the patient also prepares to move on.
Phase Three: Increased Independence
Group Profile In phase three, the adult children of all the group members are living away from their parents, enjoying relative stability. After some additional brief hospitalizations and experiences with day hospitals, halfway houses, and vocational rehab programs, the adult children are living in a variety of settings: one in a residential treatment community out-of-state, two in supportive apartment programs with weekly involvement by staff, and a fourth independently. All see psychiatrists once a month for clozapine in combination with a variety of medications, including respiridone, antidepressants, SSILIs, and antiseizure medications. Each sees a therapist, counselor, or case manager on a regular basis--often weekly. All the adult children are aware of their psychiatric diagnoses and increasingly understand why they take medication. One of them works at a part-time job and attends college classes, another regu-
From Hospital-at-Home to Community Living: The Family's Journey
109
larly attempts both volunteer and paid employment; the other two work at artistic endeavors, typically without pay. All have begun to master their personal finances and other daily living skills. Family visits occur with increasing comfort. Parents continue to attend the support group twice monthly, and all of the children are aware of their family's involvement in the group. W h e n parents arrange for housing outside the home, there is initial discomfort and often fear about how the child will manage, how safe they are, how compliant they will be with a treatment plan, and how reliable and responsible professional caregivers will be. In living situations without professional staff or a case manager to check in, intervene, and orchestrate the treatment plan, parents are left to monitor medications, make contact with physicians, locate day treatment programs and other rehab services, and coordinate all these elements. Professionals who are involved may disagree about the appropriate plan, pulling parents in several different directions at the same time and adding to the family's frustrations and doubts about the best course for recovery. In preparation for meetings at psychiatric hospitals, day treatment programs, community residences, or supportive apartment programs, parents are coached by the group members and leaders on how to make the most of such interviews to get answers and provide information. This allows parents to feel more secure in terms of their own expertise about their child's illness and more knowledgeable regarding treatment options. W h e n children first leave home for residential settings, there is often daily telephone contact and regular weekend visiting. Parents can be torn and confused about how much contact to make or to allow. Later on, there may be times when the adult children, testing out their newfound independence, fail to remain in contact with their parents, which causes another form of anxiety.The group provides a sounding board so that families can test out responses to their child's absence and their need for distance. The parent support group provides a place for strategizing about coordination of treatment options. Services are often fragmented, and turf issues or inconsistencies in philosophy may cause psychiatrists and other providers to be at odds with one another. At other times providers are simply not in communication with one another, leaving families once again in the dark, feeling isolated, and not knowing what to do next. Families may get conflicting signals from the professional caregivers who have taken on the supervision of their child on a daily basis.While members of the group continue to function as case managers, it is now at a distance.The group continues to provide support in this role as well. Phase three is marked by greater recognition and understanding of the signs and signals of relapse--the ability to identify the difference between a"blip" and a more serious downward slide. Members of the group provide reminders to one another of how a patient's current psychotic episode differs from previous ones and how the family's reaction has differed over time. Parents who feel they or their child have made no progress are encouraged by hearing the collective voice of the group,
110
PsychiatricHome Care: Clinical and Economic Dimensions
which represents a more objective and positive assessment. The group has its own internal yardstick by which it measures change. As the adult child becomes engaged in suitable, constructive programs with providers outside the home, the family can resume the life tasks that had been suspended. This is not a last step for the patient or the family. Relapses may occur, either predictably or out of the blue; such setbacks, even if temporary, engender fear and anxiety in the family. A father whose child was temporarily living alone in an apartment described his terror and panic while he waited to get into his son's apartment after the son failed to respond to his calls or knocking. Even in periods of relative calm when symptoms abate temporarily, there is still anxiety and fear. Parents speak about waiting for the other shoe to fall, of remaining in a state of constant vigilance, of not wanting to be caught off-guard should the "beast," as one parent called his child's mental illness, return. Attempting to cope with anger and frustration at needing to be so vigilant, a mother responded with humor: "I'm going to make a sweatshirt for myself which will say, Paranoia Pays."An adjustment in medication, a change of roommate, or a counselor's vacation may produce an unexpected "blip"and result in a heightening of symptoms.At these times, support of the group is vital. After independent living situations have been located and rehab programs have been found, parents face another harrowing situation: the fear of letting go and of what will happen when they aren't around to watch out for their children. When children are on their own and become symptomatic or face the inevitable rollercoaster ride of these brain disorders, parents must learn to rely on the support of the group and of a consistent team of providers to help them sit out storms. If parents run to the rescue, they only prolong dependency. Parental restraint sends a message to the patient--one of encouragement and belief in recovery. Social workers who are knowledgeable about the burden on the family and psychiatrists with expertise in psychopharmacology are valuable allies. In addition, independent case managers who are well versed in the availability of housing, recreation, socialization, and vocational opportunities can act as a liaison between the patient, the family, and the treatment or rehab world. The family that has been supported throughout the three phases described above has become comfortable utilizing the resources of group members and leaders and the expertise of other professionals. However, in times of crisis, or when parents feel depleted emotionally or physically and are unable to carry on, they need the services of a provider who will take over the coordination of services. It is often in the linkages between services that failure occurs. Patients frequently slip through the gaps that can appear among elements of an uncoordinated psychiatric system.Appropriate and effective home-based and community support systems can provide for smooth collaboration, cooperation, and communication between the family, the various engaged professional caregivers, and their ill relatives.The professionally led parent support group can play a central role in coordinating such community-based services.
From Hospital-at-Home to C o m m u n i t y Living: T h e Family's Journey
111
REFERENCES Anderson, C. M. Hogarty, G. E., & Reiss, D. J. (1981).The psychoeducational family treatment of adult schizophrenic patients: A psychoeducational approach. Schizophrenia Bulletin, 6, 495-505. Anderson, C. M., Reiss, D., & Hogarty, G. (1986) Schizophrenia and thefamily. NewYork: Guilford Press. Bateson, G. (1956).Toward a theory of schizophrenia. Behavioral Science, 1, 251-264. Falloon, I. H., Boyd,J. L., & McGill, C. (1984). Family care of schizophrenia: a problem-solving approach to the treatment of mental illness. NewYork: Guilford Press. Franks, D. (1990). Economic contributions of families caring for persons with severe and persistent mental illness. Administration and Policy in Mental Health, 18 (1), 9-18. Fromm-Reichmann, E (1948). Notes on the development of schizophrenics by psychoanalytic psychotherapy. Psychiatry, 11, 263-273. Harding, C. M., & Brooks, G. (1984). Life assessment of a cohort of chronic schizophrenics discharged twenty years ago. In S. Mednick, M. Harwan, & K. Finello (Eds.), The handbook of longitudinal research, 2. NewYork: Praeger. Harding, C. M., Strauss, J., & Zubin, J. (1987). Chronicity in schizophrenia: Fact, partial fact, or artifact. Hospital and Community Psychiatry, 38 (5), 477-486. Hatfield, A. (1978). Psychological costs of schizophrenia to the family. Social Work, 23, 355-359. Hatfield, A. (1981). Self-help groups for families of the mentally ill. Social Work, 26, 408-413. Howard, P. (1994). Lifelong maternal caregiving for children with schizophrenia. Archives of Psychiatric Nursing, 8 (2), 107-114. Landreen, J., Whelton, C., Dermer, S., Cardamone, J., Munroe-Blum, H., & Thornton, J. (1992). Needs of well siblings of persons with schizophrenia. Hospital and Community Psychiatry, 43 (3), 266-269. Leff, J., Kuipers, I., Berkowitz, R., Eberlein-Vries, 1<., & Sturgeon, D. (1982). A controlled trial of social intervention in the families of schizophrenia patients. BritishJournal of Psychiatry, 141, 121-134. Marley, J. (1992). Content and context: Working with mentally ill people in family therapy. Social Work, 37, 412-417. Maurin, J. T., & Boyd, C. B. (1990). Burden of mental illness on the family: A critical review. Archives of Psychiatric Nursing IV, 2, 99-107. McFarlane, W. R. (1994). Multiple family groups and psychoeducation in the treatment of schizophrenia. New Directions in Mental Health Services, 62, 13-22. McFarlane,W. 1<., Link, B., Dushay, 1<., Marchal,J., & Crilly, J. (1995). Psychoeducational multiple family groups: Four-year relapse outcome in schizophrenia. Family Process,34 (2), 127-144. McOoldrick, M., & Carter B. (Eds.). (1988). The changingfamily life cycle:Afiameworkforfamily therapy (2nd ed.). NewYork: Gardner. Miller, E, Dworkin, J.,Ward, M., & Barone, D. (1990). A preliminary study of unresolved grief in families of seriously mentally ill patients. Hospital and Community Psychiatry, 41, 1321-1325. Noh, S., & Turner, P,.. J. (1987). Living with psychiatric patients: Implications for the mental health of family members. Social Science and Medicine, 25 (3), 263-271. Riebschleger, J. L. (1991) Families of chronically mentally ill people: Siblings speak to social workers. Health and Social Work, 16 (2), 94-103. Simon, C. E., McNeil, J. S., Franklin, C. & Cooperman, A. (1991). The family and schizophrenia: Toward a psychoeducational approach. Families in Society, 72 (6), 323-333. Spaniol, L., Zipple, A. M., & Lockwood, D. (1992).The role of the family in psychiatric rehabilitation. Schizophrenia Bulletin, 18 (3) 341-347. Terkelsen, K. G. (1983). Schizophrenia and the family: II.Adverse effects of family therapy. Family Process, 22, 191-200. Terkelsen, K. G., & Menikoff, A. (1995). Measuring the costs of schizophrenia: Implications for the postinstitutional era in the U.S. PharmacoEconomics, 8 (3), 199-222. Toseland, R. W., P,.ossiter, C. M., & Labrecque, M. S. (1989). The effectiveness of peer-led and professionally-led groups to support family caregivers. Gerontologist, 29 (4), 465-471.
112
Psychiatric H o m e Care: Chnical and Economic Dimensions
Wasylenki, D. A. (1994). Productivity of family caregivers. CanadianJournal of Psychiatry, 3 9 (9, Suppl. 2), 565-569. Winefield, H. R., & Harvey, E.J., (1995). Tertiary prevention in mental health care: Effects of group meetings for family caregivers. Australia and New Zealand Journal of Psychiatry, 29 (1), 139-145. Xiong,W., Philips, M. R., Hu, X.,Wang, R., Dai, Q., Kleinman,J., & Kleinman, A. (1994). Family-based intervention for schizophrenic patients in China: A randomized controlled trial. BritishJournal of Psychiatry, 165, 239-247.
The Experiences of an Integrated Behavioral Health Organization Elizabeth G. Brenner and Stuart K o m a n
CHAPTER
SUMMARY
Home-care models prevalent in the public child welfare sector are frequently devoted to two groups of youngsters: those returning home following placement and those considered at risk for placement. These family reunification and prevention models have their parallels in the psychiatric field: those focused on stabilization or relapse prevention and those focused on hospital diversion. This chapter describes a family support team developed by an integrated behavioral health care organization and the pay structure(s) supporting these public-sector programs. It also recounts the challenges and opportunities involved with moving this model to the private-sector managed care arena, including discussion of differential demographics and outcome measures for the public and private venues. Also examined are the common reimbursement models in the managed care sector, both public and private, and the hurdles encountered in structuring home-care service contacts with managed care payers.
Psychiatric Home Care: Clinical and Economic Dimensions
Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
113
114
Psychiatric Home Care: Clinical and Economic Dimensions
H O W T H E FAMILY S U P P O R T T E A M GOT STARTED The Family and Home Consultation Service of Choate Health Management, Inc., also known as the Choate Family Team (CFT), began operations in the spring of 1992.The idea for the service originated with one of Choate's founders, following his participation in the planning and implementation of a public-sector home-based model in the Boston area. CFT now serves both the public-sector and the commercial managed care sector. The sponsoring organization, Choate Health Management, Inc. (CHMI), which was incorporated in 1990, specialized in the development and implementation of mental health and behavioral medicine services, acting as a provider system for HMOs, managed care organizations, insurers, EAPs, community hospitals, and government agencies. CHMI's goal was to design and implement flexible, comprehensive treatment options and cost-efficient systems of care that would respond to changing patient needs with individualized and effective treatment. CHMI programs are designed in the tradition of clinically integrated, vertically organized systems of care--systems that do not pay blind allegiance to traditional inpatient and outpatient models of service delivery. The development of alternative and diversion services is driven by a commitment to provide thorough and professional clinical care at a reasonable cost.
TRANSFERRING PUBLIC SECTOR MODELS TO PRIVATE MANAGED CARE AGREEMENTS In Massachusetts, the state system of services for children includes multiple branches. CFT began by servicing the children and families of the Department of Social Services (DSS), the child protective agency. The agency sponsored programs based on the two conventional goals in home care: to help children remain safely at home or to facilitate reunification with their families after a period of institutionalization or other substitute care.Various types of home-based care had been contracted by the agency over the years. With changes in the private and public health insurance systems came an increase in demand for services for more acutely disturbed children. Children who were previously institutionalized in psychiatric hospital settings for long periods of time were being discharged much sooner to home and community settings. This in turn demanded a shorter term, professionalized model of home-based care (Fassler, Hanson-Mayer, & Brenner, 1997). In response to these changes, CFT developed a theoretical model that combined traditional public-sector, in-home, family-based services with principles of family therapy and crisis intervention. Once the team evolved a model that
The Experiences of an Integrated Behavioral Health Organization
llS
seemed effective with state-contracted clients, CFT expanded the services t o include the private sector. This shift presented several challenges: (a) defining the service to meet the needs of this population, (b) decreasing the length of stay in keeping with a managed care crisis intervention model, and (c) making changes to accommodate the medical model of managed care companies. One mission of managed care organizationsto decrease the use of costly inpatient treatment episodes--seemed a good fit with a family-based, solution-focused service in which home-centered treatment could "wrap around" the specific needs of each child and family. Skills in family preservation and family reunification are consistent with the goals of psychiatric hospital diversion or early transition from acute care to home-based care. It is difficult to argue against the concept of providing quality care for clients in their home environment. Such care has been demonstrated effective in addressing the problems of child welfare and psychiatric crises. In practice, however, there are many challenges to providing this type of care. One of the main challenges is directly connected to not serving the patient inhospital. How do we rapidly create a community-based safety net in a situation where everyone is struggling to change yet fearful of repeating past failures? The anxiety can be quite intense for all involvedmespecially for the identified caregivers. However, it is often when the family and client are working within the context of crisis that this anxiety motivates them to take those difficult steps toward change. The CFT'S job at this point is to empower families and help them to take responsibility for change by enhancing the family's focus on their goal. Interventions under the home-care program are designed not only to interrupt the presenting crisis but also the pattern of crisis that led up to the referral.This includes engaging all relevant nuclear and extended family members and clinical professionals at the point of crisis. By meeting with families and treating professionals in home or community settings, a team of family therapists creates a series of powerful interventions meant to interrupt the failure pattern both within the family and professional systems. It is a short-term intervention capable of creating longer term change (Fassler, et al., 1997). During its developmental stages, the CFT tested a broad range of theoretical models and techniques. From the beginning, the team attempted to share power with clients. Issues of power and hierarchy among team members, and between team members and clients, were primary areas of concern as the model developed. Particular emphasis was placed on finding ways to empower clients to create their own change. One of the primary techniques for accomplishing this is the "systems meeting"ma reworking of the traditional case conference, with families taking a central role in discussion, analysis, and development of an action plan.The sharing of leadership among therapists and family members in that setting emphasizes the value and importance of all participants. A primary goal of treatment is to diminish the crisis that precipitated the referral. Services are delivered at a variety of locations, including CFT offices, hospital
116
PsychiatricHome Care: Clinical and Economic Dimensions
emergency rooms, families' homes, outpatient clinics, schools, churches, and other community-based settings. The locations of the interventions are determined by clinical and other pragmatic concerns. Initially, the team takes charge of safety management issues. Once the worrisome symptoms and behaviors are stabilized, a plan for continued success is developed with the family and collateral providers. In most cases, clients return to the care of collateral providers or begin traditional outpatient treatment (Fassler, et al., 1997). Intensive family therapy and case management are provided by a pair of master'slevel clinicians to manage cases of high acuity on an outpatient basis. Co-therapists consult with one another, other members of the CFT team, and team supervisors to ensure that safety issues are addressed objectively and progress is being achieved. A child psychiatrist is consulted on every case to assess issues of danger, development, and diagnosis. Individual family members are evaluated by the treating team and referred for a psychiatric evaluation when clinically indicated. Psychological and neuropsychological testing and other consultation are accessed as needed. The program aims for significant progress toward the goals of family reunification or out-of-home placement prevention. This model is particularly well suited to the problems of children and the needs of families, which have been traditionally neglected by institutional settings. A short-term treatment model based on family-client empowerment and responsibility, as well as crisis intervention and family therapy, was developed to achieve long-term change that ensures a combination of clinical success and reduced mental health costs (Fassler, et al., 1997). Since its inception, the program has provided hospital stepdown and diversion services to children, adults, and families in crisis. When the service began as a public-sector program, there was uncertainty about addressing safety issues. The team also had concerns about providing successful treatment within the 13 weeks allowed under the public-sector contract at that time. Ironically, in-home intervention proved to have its own leverage points.Without the respite from the initial problem that out-of-home placement typically provides, the intensity of family concern motivated previously untapped skills and resources and promoted more rapid change in positive ways.As experience grew, lengths of treatment decreased, in some cases to just 1 week. Experience has further shown that the home-based treatment process can better diffuse and redirect the challenges encountered when issues of safety and length of treatment collide within a context of treatment failure. In effect, the CFT promotes a process by which responsibility for change remains in the hands of family and community supports, as opposed to being taken over by substitute caregivers who will not own the problem permanently. Experience adapting the public-sector model to the private sector has also demonstrated that this treatment approach is well suited to handling the multiple difficulties and inherent dangers of providing crisis treatment in managed care situations. For children in crisis situations, family-systems issues are usually present.A1-
The Experiences of an Integrated Behavioral Health Organization
117
though the large majority of the program's clients are children and adolescents, family-based services have also been effective with adult clients and their families when there are family-systems issues connected to the crisis.
REFERRAL PROFILES The descriptive data reported here about program clients was gathered from January to June 1996. A total of 87 identified clients were in treatment in the program during this time period, referred by both the public and private sectors. In keeping with the outcomes orientation of managed care, the C F T program has developed a database to gather and analyze information. Some outcome measures and studies are done routinely, and others are in planning stage. Client satisfaction surveys are completed, as is the C H O A T I P , , an outcome tool currently being tested for validity and reliability. The C F T is involved in descriptive and outcome studies in conjunction with a number of payers. Overall, 17% of the clients during the first half of 1996 came from DSS contracts, with the remaining 83% from managed care sources. The trend currently is for the program to serve more state clients as the Commonwealth of Massachusetts moves to decrease utilization of residential options and promote community-based care. The ages of identified clients in the program were as follows: 6-11 years: 12-17 years: 17 and older: 0-5 years:
39% 38% 21% 01%
The program currently has state contracts only with the DSS population; there are no current contracts with other child-serving state agencies or with adultserving state agencies. The 21% adult-identified client figure (17 years and older) represents both DSS cases in which the mother is sometimes referred to as the identified patient, as well as managed care cases in which there is an adult-identified patient referred in the context of a family crisis. Seventy-eight percent of our clients are children and adolescents. The C F T breaks down referral types into two categories: hospital diversion (or out-of-home-placement prevention) and hospital stepdown (or family reunification), which in 1996 accounted for 60% and 40%, respectively. Data from April 1995 indicated an almost equal number of diversion and stepdown cases.The higher 1996 percentage in the hospital diversion category could indicate that the program is being used more for prevention; an alternative hypothesis is that the level of risk of clients being referred for diversion is higher than in the past.
118
Psychiatric Home Care: Clinical and Economic Dimensions
T h e primary reason for referral was broken d o w n into six categories:
Reason for Referral
(N = 87) (%)
Suicidal ideation/behavior
48
Impulsive/aggressivebehavior
34
Eating disorder
08
Homicidal ideation/behavior
03
Mood disorder (w/o SI,HI)
03
Abuse/neglect
03
N i n e o f the admissions to the program during this time flame were readmissions. Major depression, attention deficit hyperactivity disorder (ADHD), and posttraumatic stress disorder (PTSD) are the most c o m m o n diagnoses o f patients presenting to the CFT.
Diagnoses among Home-Care Team
(N = 87) (%)
Major depression
22
ADHD
21
PTSD
19
Dysthymic disorder
10
Eating disorder
10
Adjustment disorder
08
Family Relational problems
03
Oppositional defiant disorder
03
Obsessive compulsive disorder
02
Pervasive developmental disorder
02
Bipolar disorder
02
Cases using the DSS model include a prevention c o m p o n e n t to the work, which explains their longer length o f stay. T h e i r mission for family crisis stabilization includes an agenda that values intensive intervention for issues o f child abuse and ne-
The Experiences of an Integrated Behavioral Health Organization
FamilyType
119
(N = 87) (%)
Nuclear
33
Divorced (singleparent) Blended
19 19
Single parent
17
Intergenerational
06
Other
04
Adopted
02
glect.The cases are referred for a 15-week period with a mandate for three in-home sessions per week.A variation of the model requires a m i n i m u m of 15 weeks, with two to three sessions per week and the possibility for treatment extensions. These two models reflect two different contracts with somewhat differing goals and philosophies. The longest case to date that CFT treated for a DSS payer was 7 months; this involved the reunification of two teenagers from separate long-term foster care placements. The DSS model is based on a crisis intervention philosophy. There are triggers that allow a state caseworker to access our services. In general, the trigger is an increase in the child's need to be removed from home. For example, the filing of a second report of abuse and neglect within 6 months could trigger a referral to the service. Family reunification after an-out-of home placement is another trigger. The more flexible DSS model, which allows for a longer term length of stay, comes from a program with a strong mission to facilitate family reunification. This is a program in which the management of cases has been contracted out to a community agency by DSS. This agency has a more clinically based approach to service provision and goal attainment.The model is run through a program that represents the state's attempts at managed care. The program uses home-based services to decrease utilization of more restrictive and expensive residential and specialized foster care settings. Use of home-based treatment has been beneficial to the goal of reuniting children with their families. By compiling descriptive data with a few other programs that serve the crisis intervention-oriented DSS contract, the CFT gathered information about the type of families this contract actually serves. Through information sharing, we also confirmed many of the beliefs about the contracted work held in the separate programs. Despite the DSS model's crisis intervention philosophy, CFT's sense of the clients served is that they often are families who do not see that they are in crisis. Therefore, they often lack the kind of motivation that encourages successful brief treatment.A referral to the Intensive Family Intervention Program (as DSS calls the CFT
120
Psychiatric H o m e Care: Clinical and E c o n o m i c Dimensions
service) is initiated by the DSS worker.The family, often less than voluntarily, agrees to work with the teams. It is in those families that are more open to such intervention that the CFT can effect the greatest change. In some cases, families that are initially reluctant to use the service can see the benefit relatively quickly as we try to empower them to see how our involvement can help.There are times when our involvement creates a crisis for the family in that we witness ongoing problems in a way that makes them harder to ignore. At other times the CFT attempts to clarify what the consequences will be for the family with DSS if they do not change. This can either precipitate a crisis or help the caseworker and family see that there is currently no impetus for change. As providers, we all agree that the stipulations of meeting with families at least three times per week often do not meet the needs of our clients.We worry that we lose cases because the families cannot manage this high level of intervention. Families with few emotional and practical resources that are ambivalent about change seem to see this as intrusive, demanding, and overwhelming.We also worry that for families who do engage in this level of service, ending abruptly after the contract is over can create further hardship.
OUTCOME
FIGURES
CFT began to collect data to assess whether its sense of the problems with the work were well founded. The team was serving the state-managed DSS contract with a 15-week, B-home-visits-per-week model. In order to collect a broader range of data, we collaborated with three other agencies, some of which also used a 7-week, 3-to-5-home-visits-per-week model to serve families with more acute triggers, including a child being placed in a shelter, psychiatric hospital placement, and parent requesting placement. Initially, CFT was interested in how many families did not complete the service. In fact, more families completed the service than expected. Twenty-four of the total 73 families ended treatment before the contract was over. Seventeen of the 24 early-closing cases ended for reasons that apparently related to the degree of service provided.
Reason Case Closed Early
Number
Goals achieved
3
Child placed out of home
3
Inappropriate referral
3
Client unable to meet
4
Client refuses services
10
Client no shows
1
Runaway
1
The Experiences of an Integrated Behavioral Health Organization
121
In the process of gathering information from our program and three others on 79 cases, C H M I found the following: 9 19% 9 47% 9 52% 9 40%
were involved with DSS for 5 years or more. were involved with DSS for 3 years or more. had a history of DSS placement. had a history of psychiatric hospital placement.
The data regarding length of family involvement with DSS could be underestimated, since this information was u n k n o w n in 19 of the 79 cases. However, at least 66% of the families had a 3-year or longer history of being served by the child protective agency. (Preliminary outcome data also include information about the number of child abuse and neglect reports filed during C F T involvement and the number of children placed out of the home during the intervention. Six families had children placed during the intervention, and nine families had abuse and neglect reports filed against them.)
DIFFERENTIAL PROFILES AND E X P E C T A T I O N S : D E P A R T M E N T OF S O C I A L SERVICES VERSUS MANAGED CARE ORGANIZATIONS The length of stay in the C F T program from admission date to discharge date was 49.1 days overall, with 40.17 days for managed care referrals and 96.46 days for DSS referrals.The shorter length of stay for managed care cases reflects two factors. First, the goals of managed care organizations (MCOs) are to stabilize the specific symptoms that precipitated a psychiatric crisis. Typically, M C O s set a relatively high threshold for admission to care.The focus is on the mental health of the identified patient, particularly with regard to the factors effecting danger to self or others or inability to care for self. Second, C F T experience has been that clients with private health insurance come to the program with more resources and less environmental stressors. Because of this, they are often able to stabilize more quickly in a crisis. C F T has not provided service through the public-sector managed care contract, although it has had some referrals of families who have been able to choose private health insurance as an option through their Medicaid benefits. However, the number of families seen through managed care contracts with state-funded insurance has been very small. In addition, very few of the families with private insurance are involved with DSS.Typically the families with private insurance have at least one parent who is gainfully employed, and they often live in more affluent suburbs as
122
Psychiatric Home Care: Clinical and Economic Dimensions
opposed to the inner-city DSS clients. Thus, both CFT's work and client population for the state versus M C O s are significantly different. LOS statistics reflect these differences. The average number of sessions for DSS clients is 25.7 whereas the average number of sessions for M C O clients is 6. The length of stay of DSS cases is approximately 3 months; the length of stay for M C O cases is approximately 6 weeks. The frequency of sessions for the managed care cases is approximately once a week. Length of sessions for DSS cases is about a n hour. The CFT model for managed care cases is to provide more time- and labor-intensive sessions that occurs less frequently.Typical sessions involve 1-1/2 to 2 hours with two master's-level clinicians. This fits with a model of making the most of the brief time allotted, as well as with a mind set of attempting to empower the families to function autonomously between sessions.We attempt to allot time for them to attempt new solutions to their problems, while being available by phone or page to help whenever necessary with crisis de-escalation or the prevention of another crisis. Managed care referrals most often come from the managed care case manager in an effort to prevent the client from being hospitalized or to decrease the length of hospitalization. Clinicians in the Choate system or other systems also refer patients to the team, with approval of the M C O . Referral sources for managed care clients are as follows:
MCO
48%
Choate Network (all levels of care)
28%
Higher level of care
17%
Outpatient treatment
3.5%
Self
3.5%
For all clients, services are utilized with the following frequency and time frames: 9 Phone response: within 15 minutes of referral Face-to-face crisis evaluation: within 24 to 48 hours of referral 9 Family therapy sessions: 1 to 3 times per week 9 Parent guidance: 1 to 2 times per week 9 Systems meetings: 1 to 3 per course of treatment 9 Phone contact with family: 1 to 7 times per week 9 Phone contact with collaterals: as needed 9 Phone response to family in crisis:within 15 minutes,24 hours/day, 7 days/week
9
The Experiences of an Integrated Behavioral Health Organization
123
Preliminary outcome information related to both DSS and M C O cases includes information about the use of higher levels of care while the family is being seen by the CFT. Psychiatric hospitalization is the relevant higher level of care for M C O cases, and out-of-home placement is the relevant measure for DSS cases. Data gathered in April 1996 from the previous 6 months suggests that 96% of the cases evaluated by the C F T were not referred to a higher level of care at the time of initial evaluation. These data were collected during a time when half of the referrals were diversion cases and the other half were stepdowns from a higher level of care. During this same period, 91% of the cases did not get referred to a higher level of care throughout treatment or at discharge. There is no question that many of the clients served by the CFT would have been hospitalized in the premanaged care era for the same level of acuity. DSS cases may be been out-of-home placements. Examining the data with this in mind shows that it is possible to work with clients in their homes and community settings even w h e n there is a potentially life-threatening crisis. Definitions of medical necessity, including the criterion of risk that the patient poses to self and others, need to be expanded to include psychiatric crises that would precipitate referral to a home-based program. The criteria we established for the home-based C F T program might be helpful in this regard.
Level o f Care Criteria
A.
General Criteria
1. The child, adolescent, or adult has a psychiatric disorder of a type that could be potentially responsive to a stay in a family crisis stabilization program due to issues in the h o m e / c o m m u n i t y environment that place patient at risk for hospitalization. 2. The patient does not exhibit any of the following problems to a degree that requires 24-hour or partial hospital-based care and treatment: serious suicide risk, aggressive behavior that imminently threatens the safety of others, acute psychosis that impairs the ability to function at home, medical needs requiring 24-hour care, serious risk for elopement form the home, family unable to provide for safety. 3. Outpatient services have failed or the clinical presentation is too acute to be managed in an outpatient setting. 4. The patient and family are not receiving similar services from Department of Mental Health (DMH), DSS, or another agency. B. A t Least One of the Following Should Be True:
1. The patient requires family crisis stabilization in order to provide for and maintain safety. 2. The patient requires evaluation, crisis intervention, and treatment planning of an intensity and kind that could not be adequately provided or coordinated in a less intensive level of care.
124
Psychiatric Home Care: Clinical and Economic Dimensions
3. T h e patient and family require f a m i l y - o r i e n t e d crisis stabilization in o r d e r to m a i n t a i n gains m a d e in m o r e intensive treatments. 4. T h e p a t i e n t requires family crisis stabilization in o r d e r to transition to a less intensive level o f care. 5. T h e p a t i e n t requires family crisis stabilization in o r d e r to prevent d e t e r i o r a t i o n and utilization o f m o r e intensive t r e a t m e n t options.
C. Specific Patient-Environmental FactorsmChecklist
Yes
No
Unknown Dangerous or impulsive behavior that places self or others at risk of harm Symptoms of psychosis that place self or others at risk Symptoms of severe affective disorder that place patient or others at risk and significantly impacts his/her level of functioning Symptoms of severe anxiety disorder resulting in significant functional impairment Anorexia/bulimia with significant weight loss, signs of malnutrition, or electrolyte imbalance Current substance dependence resulting in significant functional impairment or medical instability Family/social environment only able to provide for safety of patient with intensive support of therapeutic team Multiple diagnoses that complicate treatment and/or increase safety risks A history of psychiatric hospitalization and/or inability to utilize treatment or treatment failure Developmental issues which place the patient at risk for harm to self or others Acute disturbance of consciousness and/or cognition that places self or others at risk Other (specify):
The Experiences of an Integrated Behavioral Health Organization
125
Family/environmental factors exist which place patient at risk for harm to self or others (check positive findings):
Marital/parental problems Substance abuse Medical problems Psychiatric problems Socioeconomic problem Educational problems Lack of adequate support system Protective issues (including suspected or documented abuse/neglect)
Generally, the work of the C F T is accomplished when the identified patient's symptoms have stabilized out of the crisis realm.The relative stabilization of the family and environmental factors that precipitated or contributed to the crisis are taken into consideration w h e n deciding the appropriate time to end treatment. Different M C O s have varying perspectives on the scope of home care that impact length of stay. The differences are primarily related to the amount of stabilization and prevention work that occurs after the immediate threat to safety has abated. Providing time-limited services for patients in acute need, with a focus on consumer empowerment and responsibility, is certainly a basic tenet of the C F T program and, ostensibly that of the M C O , as well.
M O D E L S OF R E I M B U R S E M E N T There are a number of fiscal reimbursement models for home-based services. General categories of reimbursement include the following: per session, per diem, weekly rate, case rate, fee-for-service, and capitation. Fitting the C F T program into the billing, utilization review, and case management systems of M C O s is a challenge on multiple levels. In the context of the health insurance industry, the services provided by a homebased program are nontraditional. The advent of managed care required flexible thinking about psychiatric treatment as the length of inpatient hospital stays were decreased.Treating individuals in a cost-effective way in the community to prevent psychiatric hospitalization or decrease the length of inpatient stays fits with the philosophy of managed care. The easiest comparison with an already reimbursed
126
Psychiatric Home Care: Clinical and Economic Dimensions
service is medical home health care. However, managed care has both opened the door and been a barrier to reimbursement for this nontraditional psychiatric service. O u r experience is that it will be a challenge to convince insurance companies with a medical model framework and an emphasis on managing utilization to embrace home-based psychiatric service.The components of home-based care are outside the realm of traditionally reimbursed inpatient and outpatient mental health services. For example, beeper availability, intensive case management, systems consultation, travel time to homes and community locations, and teamwork are aspects that can be time and labor intensivemand they are services that are typically not reimbursed.They are also critical components of home-based care's ability to manage clients with relatively high acuity on an outpatient basis. Most often, insurance plans do not include home-based services as part of the mental health benefit. Because the service is sometimes used to shorten inpatient hospitalization and patients generally need to be transitioned to outpatient therapy after completion, these services are often viewed as"add-on" costs. Even when an insurance company uses home-based services as an alternative to inpatient services (usually by flexing the inpatient benefit), there is a great deal of skepticism as to whether this intensive service is really necessary. Some companies have the option of extending outpatient benefits to pay for these services, and there are companies that use home-based service only in the context of already existing outpatient benefits. Although M C O s have been instrumental in developing day treatment options, it takes another leap of faith to authorize hospital prevention services in the home. The argument can be made that if a patient is stable enough to be in the home, why is the M C O paying for services that cost more than traditional outpatient services? Offering data (presented earlier in the chapter) to substantiate the acuity of patients treated and the efficacy of the service helps in clarifying these concerns. We have utilized what we learned about providing home-based psychiatric services in the public sector to develop and sell the model to the managed care community. Most important, we know that many families can rally and deal with enormous stressors and crises if they are offered enough support.When families are successful in dealing with acute crises without having to extrude a family member, they often are able to implement new strategies that can prevent future crises. This seems particularly true in working with children and adolescents whose psychiatric problems are not easily separated from the family and social milieu. Fiscally, it is difficult to encourage companies that have been founded on a mission of cost containment to offer a new category of service for reimbursement.The traditional definitions of insurance-reimbursed mental health services have to be stretched to include these programs. Stretching the boundaries is a skill well suited to system-thinking providers, who do this all the time in the context of treatment. The same flexible skills, perseverance, and patience that we use with our clients are needed to work out relationships with payers. If home-based care is not among an M C O ' s benefits, the first challenge is to convince the company that the service is both cost and clinically effective. It is important to explain why offering another
The Experiences of an Integrated Behavioral Health Organization
127
benefit to their member population will improve their ability to treat patients efficiently. Understanding the organization and philosophy of each company helps to focus the discussion. Typically, we present our service as a solution to chronic psychiatric crises that have been resistant to traditional treatment and benefits. Once we have convinced payers that a home-based program can fit with the needs of managed care, we can negotiate types and rates of reimbursement. 1Kecently, our focus has shifted to include significant amounts of time dedicated to the selling and marketing of home-based programs so that consumers will have access to these services. Flexibility in the way the service is utilized, authorized, and billed appears to be critical to program survival at this time. Initially, home-based services were funded through state contracts or grants. Service contracts were awarded for a 5-year period at a guaranteed rate and reliable expectation of services provided.This type of agreement offered tremendous budgetary stability for the program, allowing accurate staffing and revenue predictions. More recently, the state has moved to a model in which services are purchased on an as-needed basis from a group of preferred providers. These services will be coordinated by a lead agent operating from a managed care model. These agreements continue to provide a stable pay rate for the services, but there is no guarantee about volume. This uncertainty with regard to volume of business is similar to the uncertainty that exists in the private marketplace.
T h e Per D i e m Rate
State contracts and panels currently pay for home-based service on a per diem rate. This rate was calculated by spreading the cost of the service over a 5-day-per-week period for the life of the case. The case is billed at a daily rate from the day it is opened until the discharge date.The billing is not connected to the actual case activity. This fee arrangement assumes a predetermined level of case activity and family involvement, which is monitored by monthly statistics.Although the contract is based on a 15-week intervention, the service is terminated quickly if the family is unable or unwilling to participate at the predetermined level of intensity. This decision is made by the team in conjunction with the family, the DSS caseworker, and the contract representative. Sometimes extensions of the service are negotiated by the same group. In the context of MCOs, there is often a question as to what constitutes a billable service.Typically, managed care services have been billed on days when there is active case involvement. Insurance companies are used to paying for a session of outpatient therapy or a day of inpatient treatment.When per diem rates have been used with managed care services, they have been billed only on days in which there has been case activity: a session, case management, case consultation, 24-hour emergency service.
128
Psychiatric Home Care: Clinical and Economic Dimensions
The advantages of billing this way with some M C O s is that using a per diem rate fits with the way their claims process works. This can be helpful in accessing flexible inpatient benefits. Per diem charges fit into the managed care system as a substitute for hospitalization, which has a daily-rate fee structure. In many ways, this method of billing most accurately tracks the real cost of treatment: the more active the case, the more frequently the billable services accrue. However, there are problems using per diem billing in the context of managed care. Most significant are issues relating to billing of collateral activities. M C O s have been extremely reluctant to pay for anything other than the treatment session itself. In fact, we have experienced significant opposition even after the company has contracted to pay for the services in this way.The per diem rate emphasizes the conflict of asking the insurance industry to pay for nontraditional reimbursed services. The semantics of this problem become clear when one considers that the daily inpatient rate accounts for many "nontraditional" costs, including case management and team meetings. It is simply more difficult to get reimbursement for services in the era of managed care, particularly when the service is outside of the medical model norm. Another problem with per diem billing is that the level of activity of a case cannot be preplanned. Crisis sessions and phone calls are unpredictable.This makes getting authorization for the service from the managed care case manager difficult.We discuss the case with the M C O representative weekly, get approval to continue the service, and send a total of billable days at the end of each week.
T h e P e r - S e s s i o n Rate
Another c o m m o n model is the simple per-session method of reimbursement, which is easy to manage from a billing and utilization review perspective. There are fewer billable services to keep track of and justify. Data entry, billing, and claims are more streamlined. Sessions can be preauthorized because the team can request treatment in a predictable manner. Typically, we talk to the managed care case manager and request a proposed number of sessions. Some companies prefer a treatment request and treatment plan in writing. From a marketing perspective, the per-session structure is rather difficult to sell. Managed care representatives often compare per-session costs to outpatient services, their only framework for these services. However, home-based per-session costs are relatively steep, reflecting the high demand for collateral activity. Setting a rate that allows for the kind of therapeutic intensity required to manage hospital diversion symptomatology on an intensive outpatient basis is critical to the clinical and fiscal success of the home-based program.As with the per diem rate, the per-session rate must include the costs of the value-added servicesmincluding travel, case management, lengthy sessions, and the other flexible interventions that allow high-acuity care outside of institutional walls.
The Experiences of an Integrated Behavioral Health Organization
129
It is crucial that the payer understands the intensity of the services and the range of symptomatology the program can accommodate. We view home-based service as an alternative to inpatient care. It is important that the M C O understand this and look to cover home-based costs by flexing the inpatient benefit. Generally, outpatient benefits are not flexible enough to cover this service. In addition, our intention is to return people to a higher level of functioning that will allow them to use traditional outpatient treatment. Using ongoing outpatient health benefits to get clients through a crisis would leave them with nothing for follow up care, which in the long run would encourage crisis rather than prevent it.
The Weekly Rate The "all-inclusive" weekly rate is another structure that we have used.A weekly rate has the simplicity of the per-session rate. However, because one weekly charge covers multiple services to the client, many managed care companies are uncomfortable with what they perceive as a lack of accountability. In addition, because no other services are billed weekly, this anomaly tends to wreak havoc with the management information and claims systems within large organizations. Another problem for M C O s is that face-to-face treatment sessions may not occur every week, even though the family remains enrolled in the program. In our experience with managed care cases, face-to-face sessions occur statistically about 0.88 times per week. M C O s pose the following legitimate question: Why are home-based services necessary if clients are not seen more frequently than in traditional outpatient therapy? We believe that the answer lies in the significant value for clients in knowing that they can page us at any time and that they are involved in an intensive, ongoing process. It appears that the anxiety our clients face is manageable in the cocoon of support that wraps them in their home and community settings.Although time and labor intensive, the team support, consultation, and administrative backup we utilize is crucial to the success of the program. Unfortunately, both costs and clinical benefit are a hard sell to most MCOs.
The Case Rate The case rate is another billing option with the advantage of simplicity and the potential disadvantage of lack of accountability from the managed care perspective. With a case-rate agreement, there is a standard cost per case.The critical factor here is to know the referral population and treatment model well enough to be able to predict a reasonably accurate cost per case. It is important to enter into this kind of agreement with a payer only with a mutual understanding of the specific goals and limitations of the service. It might be prudent to develop a relationship with the payer through another fee-for-service structure before billing at a case rate. During that time, data could
130
Psychiatric Home Care: Clinical and Economic Dimensions
be collected and shared about length of stay, frequency of interventions, hospitalization/placement rate, as well as other critical information.All fee structures benefit from an open, ongoing, evaluative relationship between the provider and representatives from the contracting organization. Problems with clinical and fiscal issues are often connected. Such difficulties need to be assessed systematically in order to foster a collaborative working relationship that will result in the best service to our clients. O n e recent DSS contract incorporates a case rate with three levels of care. This contract was redesigned to assist DSS in facilitating the transition home for children w h o have been in long-term residential placement.The service has been nicknamed "Whatever It Takes" by one administrator, since the expectation is that we will do whatever it takes to successfully reunite the child and the family. The first 3 weeks of the contract are dedicated to an intensive multisystem assessment of the case in conjunction with the state, the residential program, the lead agency, the family, and all other relevant parties. This assessment is paid at a flat rate and requires 10 hours per week of documented work.The first phase culminates in a meeting with all parties. At this time we present our findings, propose a treatment plan, and choose the appropriate intensity of intervention. The agreement requires that we work with clients for 3 months prior to the child's discharge from the residential program, and then for 3 additional months following the child's return to home and the community. By design, the state created a high-intensity service. The contract requires a minimum of 5 hours per week of work on the case for the least intensive level of care. Seven hours per week of work, at minimum, are required for the moderate level of care. The most intensive level of care requires a minimum of 10 hours of work per week. Clarifying roles and responsibilities of all the caregivers presented the initial challenge for our team. Much communication and case coordination were required in order to avoid role confusion and redundancy of services. O u r preliminary data indicate that the model has been more successful in reuniting children and their families compared to a less intensive model with a similar population. With the less intensive services, a model that is more cost-containment oriented, we found that the rate of successful reunification is significantly lower. The flexibility of this model with regard to levels of care is a feature that has worked well clinically and fiscally because we have been able to match the intensity of service to the needs of particular clients and treatment systems. D o c u m e n t ing the amount of care provided based on the hours spent per week rather than the number of face-to-face visits also allows for more flexibility to tailor treatment to the changing needs of the family. Managed care systems working with the Medicaid population also utilize a flexible home-based service with varying levels of care to accomplish the goals of hospital diversion or step down from the hospital. In MassachuSetts these models have typically been reviewed every 2-4 weeks by the M C O with authorization for an initial month of service and a 3-month limit.
The Experiences of an Integrated Behavioral Health Organization
131
F e e - f o r - S e r v i c e or H o u r l y R a t e
A fee-for-service model is another option for billing. The significant advantage is the flexibility to match the intensity of the service to the client's needs as they vary over the life of the case. Depending on the way the care is managed, the program may be constrained by the contract's financial cap for services and the rate of pay. The simplest fee-for-service model we have worked with is the hourly rate.An hourly rate is established for clinical time spent on the case.Also developed is a menu of services that can be billed. It is possible to provide cost-effective service by utilizing non-master's prepared staff and interns to do some of the work.This can happen with any of the reimbursement models as long as this practice is deemed appropriate by the payer and the individuals are well trained, supervised, and supported (see chapter 10 by Jessica Wolf, on the use of para professionals) . With feefor-service models, it is possible to charge varying rates depending on the level of training of the worker providing the service. It is also possible to vary the kind and intensity of service on a continuous basis, meeting the needs of the clients without adhering to a predetermined level of care. In an interesting cost-share arrangement, two of our state contracts reimburse us with the expectation that we bill the child's Medicaid outpatient psychotherapy benefits for the actual clinical hours spent by a licensed master's-level clinician on the case.The child welfare system then reimburses us at an hourly rate for the wraparound services not covered under the mental health benefit. These allowable charges can include travel, case consultation, case management, documentation, and meetings with collateral providers. Because C F T is housed in an integrated behavioral health organization, billing outpatient psychotherapy through our program was not as difficult as it has been for traditional family service agencies. However, this adds another significant level of documentation and administrative resources. Other complications include a difference between the amount of clinical time the varying payers believe is necessary for a particular client depending on the payer's agenda. For example, the insurance company is interested in paying for outpatient psychotherapy to stabilize an acute psychiatric episode.The child welfare agency is often interested in providing a higher frequency of services with the agenda of preventing future child abuse and neglect to prevent the need for out-of-home placements. The insurance company will only reimburse for licensed mental health professionals. The child welfare agency wants the C F T to provide services such as intensive case management, assisting families with transportation, and mentoring that can be provided in a cost-effective way by paraprofessionals who are nonreimbursable by insurance companies. The provider agency can be caught between the two payers in terms of accountability for differing goals and treatment methods. Creative solutions to these funding dilemmas involve the use ofmultidisciplinary teams working on the cases. A bachelor's-level or paraprofessional staff person can provide concrete services such as teaching behavior management in conjunction with a staff clinician who provides the more therapeutic services. As the
132
Psychiatric Home Care: Clinical and Economic Dimensions
permutations of payers have influenced the development of home-based care, it is hoped that the flexibility that is the essence of home-based services can allow for the accomplishment of goals that meet the needs of the clients as well as various stakeholders.
Capitation Capitation is a model under which we believe home-based services will flourish because the financial risk is shifted to the provider institution. From the provider perspective, there is freedom to develop and use interventions that we believe will accomplish both clinical and fiscal goals. Capitation eliminates the need to establish program goals that are connected to the MCO's goals. The home-based provider can determine the level, intensity, and frequency of services, as well as the length of stay appropriate to achieve clinical goals. In this context, home-based care providers are able to experiment with more stabilization and prevention services. Capitation also allows clients to discontinue treatment with the assurance that they can call back without contacting a gatekeeper if they need help in staving off future crises. A downside of capitation is the possibility of overutilization. For cost-containment reasons, it is important to have a review process to guard against the service being misused. It is difficult to determine the appropriate ending point for home-based treatment even when we have the ability to make those decisions independent of a reviewing body.We have found that creating less-intensive levels of home-based care works well. Prevention and aftercare services do not need to occur with the same frequency or intensity as stabilization services. A transition to a single therapist on the case can be made while maintaining continuity of treatment.The co-therapist is available for consultation with the therapist who remains on the case, and can reenter the case if a crisis phase necessitates a higher level of intervention.
SUMMARY C O M M E N T S The advantage of home-based care is evident when it successfully allows individuals to get help in their natural environments without losing their personhood to patienthood. Decisions made in both the public and private sectors about appropriate levels and length of psychiatric care have been complicated by philosophical and legal dilemmas related to protection and autonomy. If inpatient alternatives such as home-based care are to meet their potential in conserving health care expenditures while applying clinically sound interventions, definitions of medical necessity should not make psychiatric crisis the only basis for accessing services that, if offered more broadly, could help prevent a crisis from occurring.This new way of thinking will require flexibility on the part of both providers and payers in the application of resources based on the varying needs of the patient.
The Experiences of an Integrated Behavioral Health Organization
133
In Massachusetts pilot projects are bringing together the interested parties: families, state child welfare agencies, schools, health insurance companies, courts, public health agencies, housing providers, and other service providers. Pooled funding is occurring to address the various aspects of the problems impacting the clients from poverty to psychology. Home-based providers can be their most effective in containing costs and solving clients' problems without the constraints of larger systems' bureaucracy and the limitations of each individual payer. By pooling financial resources, individual stakeholders can accomplish their goals in a cost-effective way by reducing the overlap and discontinuity that occurs with traditional services that are not linked.
REFERENCE Fassler, D., Hanson-Mayer, G., & Brenner, E. (1997, Spring). Home based care. Acute care psychiatry: Diagnosis and treatment. Baltimore:Williams &Wilkins.
This Page Intentionally Left Blank
Roles for Paraprofessionals in Psychiatric Home Care Jessica Wolf
CHAPTER SUMMARY Paraprofessionals can play important roles in the provision of psychiatric home care, both to extend the services of social workers, nurses, and physicians and to provide the supports and skills training often required by patients with debilitating psychiatric conditions. This chapter explores the rationale for paraprofessional participation in psychiatric home care, identifies competencies needed by such providers, offers examples of the value of paraprofessionals currently working in home-care settings, and suggests implications for training and service delivery.
RATIONALE FOR PARAPROFESSIONALS IN PSYCHIATRIC HOME CARE The predominant models for serving individuals with serious mental illnesses in communities have shifted from a medical-only approach to a combination of medical and rehabilitation models.Alternatives to inpatient care, such as partial hospital and outpatient clinic care, have been augmented by a range of community-based Psychiatric Home Care: Clinical and Economic Dimensions
Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
135
136
PsychiatricHome Care: Clinical and Economic Dimensions
services, including clinical or intensive case management offered by multidisciplinary teams. The intent of these teams is to offer both medical treatment and social supports that increase the odds for successful recovery. In addition to providing direct service, these teams provide coordination of care, a critical component of community care. Represented on these teams are psychiatrists, social workers, psychologists, nurses, and paraprofessional mental health workers. Driving the shift to medical/rehabilitation models are economic considerations, as well as concerns about the quality of care (Carling, 1995; Goldberg, 1994; Stein & Test, 1980; Weisbrod, Test, & Stein, 1980). The seminal work of Stein and Test, replicated across the country and overseas, showed that patients with long-term illnesses fared better in communities in which there was sustained assistance from integrated case management teams. Significant reductions in hospitalization, with attendant reduction in the costs of treatment episodes, were also realized when care was provided over time by such teams. Community-based providers are beginning to recognize that some clients can graduate to a less intensive level of care, findings borne out through experience with the Stein and Test model in Bridgeport, Connecticut (Degen, Cole,Tamayo, & Dzerovych, 1990). In some instances, those graduating to a lower level of care experience setbacks and need to resume a regimen of more intensive supports; yet over time most patients manage well with fewer services at a lower intensity. The new models of care address the functional deficits resulting from psychiatric illnesses, rather than focusing on symptom reduction alone. The services provided by such rehabilitation-oriented programs include functional and needs assessments, advocacy, service linkage, skills training, family education and engagement, and counseling (Vaccaro,Young & Glynn, 1993). Carling's (1995) work on the personal supports model suggests that professional services be viewed as the "last resort" rather than the first one for individuals with serious mental illnesses. He presents "natural supports" (family, friends, neighbors, church membership, civic participation, etc.) as the networks of choice, with professional care as only one of several possible components in the overall personal support model. The importance of individually tailored services is stressed in both the community support system and personal support models (Anthony, 1993; Carling, 1995; Munetz, Birnbaum, & Wyzik, 1993; Stroul, 1988), an issue addressed in several sections of this book. Most of these programs share a philosophy of recovery consistent with rehabilitation regimens in other areas of medicine. In keeping with this philosophy, these programs encourage individuals with psychiatric diagnoses to train for work in the field, and support employment of a culturally diverse workforce capable of working effectively with clients from a variety of cultural and ethnic backgrounds. Although the use of paraprofessionals apparently is not widespread in areas where home care has a nursing focus (Muijen, Marks, Connolly, & Audini, 1992), there are reports that nursing agencies are now extending home care through the use of paraprofessionals. Literature in Great Britain, Sweden, and the United States describes
Roles for Paraprofessionals in Psychiatric Home Care
137
numerous examples of psychiatric home-care programs in which visiting nurses and, in some cases, nursing assistants or home health care aides, provide medication, on-call service, and in-home support to clients and families (Danielson, 1995; Dean & Gadd, 1990; Kozlak & Thobaben, 1992; Marks et al., 1994).These reports suggest that home-based services for both acute and long-term care of seriously mentally ill clients can be cost effective. Paraprofessionals are more frequently identified as members of clinical case management teams, homeless outreach teams, and consumer case management programs (Carling, 1995; Nikkel, Smith, & Edwards, 1992;Task Force on Homelessness, 1992). Yet there is a considerable literature on home health aides, as extenders for nurses, providing in-home care to patients with physical illnesses (Burns & Ciaccia, 1985; Crown, MacAdam, & Sadowski, 1992; Gilbert 1992; Harris, 1993; Prager, 1996). We suggest that there are some compelling reasons for paraprofessionals to be used more extensively. Attention both to the costs of serving individuals with longterm psychiatric illnesses in community settings and to the types of services involved in this care argue in favor of increased use of paraprofessionals as members of psychiatric home-care teams.
COMPETENCIES NEEDED BY HOME-CARE PARAPROFESSIONALS Psychiatric home care may be viewed as a specialty within generic home health care, with the social worker or nurse functioning as the case manager who coordinates the services of other providers (Lima, 1995).The case manager is responsible for assessment, development of a comprehensive, individualized home-care treatment and rehabilitation plan, and establishment of desired treatment, rehabilitation, and recovery outcomes. In this model, the paraprofessional works with strong supervision from the social worker or nurse and focuses with the client on the identification and accomplishment of specific, attainable tasks. Although there is a considerable body of literature on recommended competencies, training, background, and goals of home health care aides in general (Crown et al., 1992;Widell, 1996), little is currently available that is specifically targeted to paraprofessionals working in psychiatric home care. TheVermont Department of Mental Health and Mental Retardation (1993) developed training standards for staff members in public mental health services who work directly with adults with serious mental illnesses. These standards, which apply to all levels of staff, including paraprofessionals, are summarized below: 9 Demonstrates 9 Demonstrates caring others 9 Demonstrates 9 Demonstrates
respect for persons with mental illness respect for family members of persons with mental illness and knowledge of mental illness and treatment and support strategies knowledge of a variety of intervention and support strategies
138
Psychiatric Home Care: Clinical and Economic Dimensions 9 Demonstrates ability to design, deliver, and ensure highly individualized services and supports 9 Demonstrates ability to access and employ community resources 9 Demonstrates knowledge of legal system and individual civil rights 9 Works in cooperative and collaborative manner as a team member (agency teams, interagency teams, family members, service recipients, concerned others) 9 Conducts all activities in a professional manner 9 Pursues professional growth and development
These standards have served as the basis for developing required skills and objectives at all levels of care. For paraprofessionals, they can be linked to assisting clients in setting and following up on daily living goals such as personal grooming, structuring of time, budgeting, maintaining living quarters, pursuing social and recreational interests, assisting in job seeking efforts, and so on. Helping to maintain a person with mental illness in the community and helping the person recover to the greatest extent possible involves development of numerous skills, many of which bear little relationship to medical treatment.Yet the development and employment of such skills can make the difference between recovery, sustenance, or relapse.This is the arena in which the role and skills of welltrained and empathic paraprofessionals may be of great clinical value, in addition to being cost-effective.
APPLICABLE TRAINING
MODELS
In order to ensure effective performance, psychiatric home health care paraprofessionals must be selected carefully, trained well, and given responsibility and direction in meeting clients' needs. Entry-level training, ongoing in-service training, and responsive supervision and problem solving are essential (Surpin, Haslanger, & Dawson, 1994). The use of preceptors has also been recommended as a way of improving retention and increasing effectiveness (Parsons & Taylor, 1996;Widell, 1996). Providing care to psychiatric clients in their homes requires that staff adapt to and understand the client's world.The home is the "power base" of the family (Gerace et al., 1990), and it contains a wealth of information on family and cultural life and community connections (Blackburn, 1992). The complexity of living with psychiatric illness is directly evidenced in the home setting. Medication compliance, family interactions, the effects of stigma, and the observable effects of mental illness in the family are all visible.These realities offer opportunities for helpful staff interventions and afford significant challenges to professional and paraprofessional staff alike. The public sector has developed a number of training programs for the nondisabled paraprofessional, as well as "affirmative action" programs of training and hiring mental health consumers. In Louisiana, a case management aide-training program deliberately focused on employing older adults (Simon, Morse, Speier, &
Roles for Paraprofessionals in Psychiatric Home Care
139
Osofsky, 1993).And consumer case managers have been trained and employed in a number of cities, including Denver (Sherman & Porter, 1991) and Portland, Oregon (Solomon & Draine, 1996). In Connecticut, the MERGE Mental Health Certificate program at Housatonic Community-Technical College trains students, including consumers, for entry-level positions in mental health agencies (Wolf, 1993). The Louisiana program (Simon et al., 1993) combined 160 hours of classroom training during a 10-week period, followed by a 4-month supervised field practicum, including group seminars. Program faculty included consumers, family members, members of the university department of psychiatry, the state mental health department, and the business community. Students were given pre- and posttests to evaluate their learning. The curriculum included modules on the mental health system, case management, the role of the case aide, and the personal strengths model. Other modules offered direct skills training, including interviewing, client outreach, benefits, independent living skills, and accessing transportation.Additional curricula were offered on medical emergencies, psychiatric illness, substance abuse, state mental health laws, stress management, crisis intervention and management, assertiveness skills and skills in crisis identification, problem analysis, and effective communication as members of a treatment team. Students visited community service agencies in preparation for their field placement. During the field training, students spent 3 days per week in the field and 1 in the classroom. During field placement, students undertook the same kind of work that they were to do on completion of their training. Tasks included helping clients with social security and food stamps, monitoring medication, making sure clients kept appointments, helping clients take public transportation, assuring habitable living arrangements, assisting with food shopping and meal preparation, and facilitating social activities. When Louisiana obtained the rehabilitation option within its Medicaid reimbursement program in 1992, case aide services became billable.As a result of funding reductions, however, the training program is not currently available, although the curriculum remains relevant to paraprofessional training for psychiatric home care. The Connecticut MERGE Mental Health Certificate program (Wolf, 1993) consists of a 9-course, 27-credit curriculum that includes English Composition, Introduction to Psychology, Abnormal Psychology, Introduction to Counseling, Group and Interpersonal Relations, Skills and Methods in Human Services, Introduction to the Mental Health System (a survey course), Topics in Mental Health (clinical focus), and Practicum in Mental Health (150-hour field placement plus classroom seminars) .The program offers almost half of the course work required for an associate s degree. Frequently, graduates of the Mental Health Certificate program continue on for their associate's degree in Human Services (or General Studies), and human services students often add the Mental Health Certificate program to their associate's degree in Human Services. The three specialized mental health courses, which include the 9
140
Psychiatric Home Care: Clinical and Economic Dimensions
150-hour field placement course, provide the core training curriculum most tailored to working with psychiatric clients. The survey course, Introduction to the Mental Health System, covers treatment, rehabilitation, and recovery concepts, programs, and practices. Students are exposed to a wide variety of readings, and practitioners serve as guest lecturers in the course. Course offerings run the gamut from the definition and causes of mental illness to service delivery concepts, legal issues, violence, residential opportunities, consumer advocacy and support, and stigma and public education. The Topics in Mental Health course offers a more clinical focus, with sessions on terminology, assessment and documentation, diagnosis, multicultural considerations, dual diagnosis, psychiatric medications, treatment, relapse prevention, crisis management and suicide, anger management, violence prevention, stress management and burnout, rehabilitation, goal planning and writing, entitlements, and budgeting. During field placement, students work under the supervision of a practitioner in a service agency. A range of host agencies are represented in these placements, including inpatient and outpatient services, social rehabilitation and vocational programs, shelter services, and residential programs. Several graduates have been hired by the agency that employed them during their field placement. FOLLOW-UP
WITH
STUDENT-TRAINEES
As of June 1998, 53 students had graduated from the Connecticut M E R G E Mental Health program. O f these, approximately 50% are individuals with psychiatric illnesses. Most graduates have sought and obtained employment in the field, and retention appears quite high. Jobs have included working in a shelter, being part of a crisis team, working in intake services and a drop-in center, as well as positions such as residential counselor, inpatient mental health worker, job coach, outreach worker, consumer services provider, and rehabilitation services worker.
IMPLICATIONS FOR TRAINING A N D SERVICE D E L I V E R Y The training programs described here, although not explicitly tailored to train paraprofessionals working in psychiatric home-care settings, demonstrate that it is possible to provide such training with a reasonable investment of time and funds. Paraprofessionals have proved to be cost-efficient members of clinical case management teams and other outreach teams. Home health aides and certified nurse assistants currently work in a variety of home-care settings. With additional training, they could be prepared to assist nurses and social workers in psychiatric home-care services. This training should be bolstered by effective supervision. As behavioral health care becomes an increasingly important subspecialty of the health care field, training curricula will need to include content on substance abuse,
Roles for Paraprofessionals in Psychiatric Home Care
141
addiction, and dual diagnoses. The available labor pool at the turn of the century will include more women, older people, individuals from a wide range of ethnic and racial backgrounds, and individuals with disabilities, many of whom, with adequate training, will be good candidates for paraprofessional workers in psychiatric homecare settings (U.S. Department of Labor, 1987). Numerous opportunities exist within educational settings such as community colleges and service agencies to develop and offer well-organized curricula to train such workers.
EFFE CT I VE USE OF P A R A P R O F E S S I O N A L S : A CLINICAL CASE EXAMPLE Marion is a woman in her mid-50s, with a doctorate in psychology. She has been employed for many years in positions of significant responsibility in testing and evaluation. Earlier in her life she was diagnosed with bipolar disorder with major depression. Even after a serious episode, she was able to remain functional for many years. She self-medicated with alcohol and a variety of over-the-counter and prescription medications. Although her mood changes were evident to those around her, she managed to keep her life and professional work together. However, following a period of significant stress on the job, she decompensated and was hospitalized. After discharge, Marion made a suicide attempt that resulted in a second, and longer hospitalization.When she left the hospital after the second crisis, she worked part-time and then resumed full-time employment. However, she was not able to return to her prior level of functioning. Her life became increasingly chaotic, characterized by unpaid bills, lapsed insurance, car accidents, confusion and disorientation, difficulty getting up in the morning, sleep disturbance, mood fluctuations, difficulty in concentrating, and poor work attendance and functioning. Marion's psychiatric care was provided through a psychiatrist approved by the managed mental health network attached to her health care provider network. She received no other mental health support services. The point-of-service network changed providers, and the new provider offered a home-care option. This made possible the availability of a paraprofessional worker, who called each day to make sure that Marion got out of bed and took her medicine, reminded her to contact her financial planner, encouraged her to maintain contacts with her friends, to keep her life organized, and so on. This rather minimal service made the difference between a likely continued deterioration (medication changes had helped somewhat but not enough) and a manageable life. The skills acquired through a competency-based skill-training program enabled the paraprofessional worker to help Marion set goals and reach them and make realistic assessments of her capabilities.The paraprofessional became a constant in Marion's life, supporting her during the difficult times. This worker was supervised by a psychiatric nurse, who also maintained contact with the psychiatrist regarding medications, thereby reducing the frequency of visits to the psychiatrist.The
142
Psychiatric H o m e Care: Clinical and Economic Dimensions
nurse also helped coordinate other medical care and ensure that medication interactions were taken into account before they became problematic.
CONCLUSION Well-trained paraprofessional workers under the supervision of trained nurses and social workers can assist in rehabilitation and recovery of individuals with psychiatric illnesses in a cost-effective manner. Significant opportunities exist for integrating home health aides and paraprofessional mental health workers into the context of psychiatric home care.
REFERENCES Anthony, W. (1993). Recovery from mental illness:The guiding vision of the mental health service system in the 1990s.J0urnal of Psychosocial Rehabilitation, 16, 11-23. Blackburn, J. (1992).Achieving a multicultural service orientation:Adaptive models in service delivery and race and culture training. Caring Magazine, 11, 22-26. Burns, S., & Ciaccia,W. (1985). Home health aides:The changing role--One agency's experience. Home Healthcare Nurse, 3, 35-37. Carling, P. (1995). Return to community. NewYork: Guilford Press. Crown,W., MacAdam, M., & Sadowski, E. (1992). Home care workers: A national profile. Caring Magazine, 11, 34-37. Danielson, E. (1995). An integrated cooperation model for long-term mentally ill in the community. Journal of Psychological Nursing, 33, 29-34. Dean, C., & Gadd, E. (1990). Home treatment for acute psychiatric illness. British MedicalJournal, 301, 1021-1023. Degen, L., Cole, N., Tamayo, L., & Dzerovych, G. (1990). Intensive case management for the seriously mentally ill. Administration and Policy in Mental Health, 17, 265-269. Gerace, L., Tiller, J., Anderson, J., Jiller, L., Ward, M., & Munoz, J. (1990). Development of a psychiatric home visit module for student training. Hospital and Community Psychiatry, 41, 1015-1017. Gilbert, N. (1992). Supervision of home health paraprofessionals. Caring Magazine, 11, 10-14. Goldberg, D. (1994). Cost-effectiveness in the treatment of patients with schizophrenia. Acta Psychiatrica Scandinavica, 89 (Suppl. 382), 89-92. Harris, M. (1993). Competent, supervised, unlicensed personnel will contribute to high-quality, in-home health care. Home Healthcare Nurse, 11, 55-6. Kozlak, J., & Thobaben, M. (1992). Treating the elderly mentally ill at home. Perspectives in Psychiatric Care, 28-35. Lima, B. (1995). In-home behavioral care:The missing link. Behavioral Health Management, pp. 17-19. Marks, I., Connolly, J., Muijen, M.,Audini, B., McNamee, G., & Lawrence, R. (1994). Home-based versus hospital-based care for people with serious mental illness.British Journal of Psychiatry, 165, 179-194. Muijen, M., Marks, I., Connolly, J., & Audini, B. (1992). Home based care and standard hospital care for patients with severe mental illness: A randomized controlled trial. British Medical Journal, 304, 749-754. Munetz, M., Birnbaum, A., & Wyzik, P. (1993).An integrative ideology to guide community-based multidisciplinary care of severely mentally ill patients. Hospital and Community Psychiatry, 44, 551-555.
R o l e s for Paraprofessionals in Psychiatric H o m e Care
143
Nikkel, R., Smith, G., & Edwards, D. (1992). A consumer-operated case management project. Hospital and Community Psychiatry, 43, 577-579. Parsons, S., & Taylor, P. (1996). Improving retention by implementing a home care aid preceptor program. Caring Magazine, 15, 72-75. Prager, S. (1996).The vagaries of home health care:A critical review of the literature.Journal of Long-Term Home Health Care, 15, 19-29. Sherman, P., & Porter, R. (1991). Mental health consumers as case management aides. Hospital and Community Psychiatry, 42, 494-498. Simon, P., Morse, E., Speier, T., & Osofsky, H. (1993).Training older adults to work as psychiatric case management aides. Hospital and Community Psychiatry, 44, 162-165. Solomon, P., & Draine,J. (1996). Perspectives concerning consumers as case managers. Community Mental Health Journal, 32, 41-46. Stein, L., & Test, M. (1980).Alternative to mental hospital treatment: I. Conceptual model, treatment programme and clinical evaluation. Archives of General Psychiatry, 3 7, 392-397. Stroul, B. (1988). Community support systems for persons with long-term mental illness. Rockville, MD: National Institute for Mental Health. Surpin, R., Haslanger, K., & Dawson, S. (1994). Betterjobs, better care:Building the home care workforce (Paper ser.). NewYork: United Hospital Fund of NewYork. Task Force on Homelessness and Severe Mental Illness (1992). Outcasts on main street.Washington, DC: Interagency Council on the Homeless. Twardon, C., Cherry, C., & Gartner, M. (1992). Home care aide evaluation: Assuring competency and quality. Caring Magazine, 11, 16-20. U.S. Department of Labor. (1987). Workforce 2000: Executive Summary.Washington, DC: U.S. Government Printing Office. Vaccaro, J.,Young, A., & Glynn, S. (1993). Community-based care of individuals with schizophrenia. Schizophrenia, 16, 387-399. Vermont Department of Mental Health and Mental Retardation. (1993). Training standardsfor staff who
work with adults with serious mental illnesses in public mental health services.Waterbury, VT: Weisbrod, B.,Test, M., & Stein, I. (1980).Alternative to mental hospital treatment: II. Economic benefitcost-analysis. Archives of General Psychiatry, 37, 40-405. Widell, J. (1996). Making the transition into home care: A model orientation program. Caring Magazine, 15, 36-41. Wolf, J. (1993). MERGE in Connecticut:A strategic workforce intervention in the public mental health sector. (Training Conference Paper) .Washington DC: American Society for Public Administration.
This Page Intentionally Left Blank
Outlines of a Focused Assessment: Symptoms, Stressors, Supports
THE VALUE OF A
PSYCHOSOCIAL ASSESSMENT Good psychiatric home care is driven by a thorough assessment of the patient's clinical history, current functioning, and the resources available and required to support the patient in the community.A thorough assessment leads to a well-designed treatment plan--one with explicit goals measured in behavioral terms. Combined with the case manager's own clinical experience, the psychosocial assessment is used to guide the selection of services appropriate for the client's needs. Each patient requires a different cluster of services, and differing intensity and frequency of interventions. In addition, the services needed will vary over time.Assessment indices help identify the area in which the patient requires assistance at a specific point in the treatment.Mthough presented here as discrete entities, the indices are actually a series of overlapping areas of exploration. Specific services may be overdetermined--that is, they may address several different issues identified by more than one index. Similarly, areas of investigation may well fall under more than one index. For example, the client's ability to get to and from appointments with an outpatient psychiatrist may reflect a combination of factors, including paranoid ideation regarding the bus system, the family's neglectful attitude towards the patient, the client's ability to negotiate the subway system independently, and the client's ability to purchase tokens.Without a careful assessment, the case manager will not be able to determine whether the patient requires assistance in the "simple" task of getting to and from appointments. However, for want of transportation assistance, the patient may fail to obtain a prescription for medication. This can lead to inadvertent Psychiatric Home Care: Clinical and Economic Dimensions
Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
145
146
PsychiatricHome Care: Clinical and Economic Dimensions
noncompliance with recommended treatment and subsequent decompensation to acute psychosis, requiring hospitalization. A comprehensive assessment by the case manager is designed to prevent such a serious mishap. Thorough assessment is also a valuable aid to relapse prevention. Many patients have a history of multiple hospitalizations, often the result of preventable relapses. The home health care plan should be designed to remedy the conditions and situations identified in the assessment as most likely to lead to destabilization and relapse.The combined services of the home health care planma collection of specific remedies aimed at particular areas of concern--are continually reevaluated and modified by the case manager to reflect the changing clinical condition of the patient. (See Appendix B for guidelines for designing a behaviorally oriented treatment plan.) When planning an aftercare program, it is preferable that the assessment begin while the patient is still hospitalized. The assessment should include direct patient observation and interviews, medical records review, and consultation with the hospital treatment and discharge teams. The assessment becomes the foundation upon which an individual behavioral home health care plan is developed.The explicit plan is ideally the result of this professional assessment and a "negotiated" plan acceptable to the patient, appropriate family members and network members, the treatment team, the primary therapistmand the managed care organization and payer.
FOUR INDEXES TO HELP GUIDE ASSESSMENT Offered below are four assessment indexes that help case managers organize the wealth of information that they must synthesize for each individual patient. These indexes include the Clinical Index, the Historical Index, the Social Index, and the Sufficiency Index.
The Clinical Index
The areas examined by the Clinical Index are those relating primarily to the current clinical condition of the patient. In this context, the condition of the patient from admission through discharge planning (i.e., the entire episode of the hospitalization) is considered "current." The first area under the Clinical Index is the patient's demographic profile and chief complaint.What is the patient's sex, age, race, ethnic group, marital status, and occupation? What was the reason for admission? Who brought the patient to the hospital? The next area for examination focuses on the current illness in more detail.What led up to the patient's admission? What were the precipitants? What was the patient's
Outlines o f a Focused Assessment: Symptoms, Stressors, Supports
147
pattern of drug and alcohol use prior to admission? The Clinical Index should note the premorbid level of functioning and the extent to which the patient deteriorated, as well as detail the symptoms and time of onset. The Clinical Index also prompts questions about the patient's current level of functioning, which will affect after-discharge services. Is the patient stabilized or still deteriorating? What improvement has been made? What is the current diagnosis and diagnostic description? What is the patient's mental status and symptom picture? Are there any clearly identifiable strengths or assets? To what extent does the patient contribute to the problems in his life through a paranoid stance, overt passivity, provocative behavior, or other clinically driven postures or actions? The case manager needs to examine concomitant areas of concern. Does the patient have a substance abuse problem secondary to the psychiatric disorder? H o w is the patient's physical health? Are other treatments required or recommended? Finally, the Clinical Index helps assess the patient's attitude towards professional intervention. Does the patient seek assistance, accept help passively, tolerate minimal services and contact, or refuse recommended services? Is the patient firm or ambivalent?
Elements of the Clinical Index Current clinical condition Episode of hospitalization Chief complaint Demographics Reason for admission Current illness Factors leading to patient's admission Premorbid level of functioning Level of deterioration in relation to premorbid level Symptoms at onset Patterns of drug and alcohol abuse Level of functioning at discharge Current diagnosis and diagnostic description--how condition affects patient's life Mental status with symptom picture Strengths and assets of patient Contributions to "patient's own problem" Concomitant areas of concern--medical, environmental, lifestyle Patient's attitude toward home-care intervention
148
Psychiatric Home Care: Clinical and Economic Dimensions
The Historical Index The Historical Index seeks to organize the patient's individual history into a coherent whole so as to inform the development of the service plan. T h e first area to be examined is the patient's social history, including both developmental and genetic foci.What was remarkable in the patient's childhood? D e scribe the patient's upbringing and family relationships. Is there evidence of abuse or neglect? Are any pertinent, long-standing, and psychological themes noted? W h e n did the patient first experience difficulty? What are the patient's educational and occupational histories? H o w has the patient functioned in the past? T h e Historical Index next examines the specific clinical history. The case manager should note the number and dates of previous hospitalizations and outpatient treatments. Also important are past precipitants, which can offer clues to future areas of difficulty.What were the previous lengths of hospital stay? What was the patient's clinical condition upon admission and discharge during previous hospitalizations? W h a t were the components of previous treatment plans; what succeeded, what failed, and what exacerbated the patient's difficulties? W h a t is the patient's history with treatment compliance? W h a t is the patient's medication history?
Elements of the Historical Index Social history--developmental and genetic Remarkable events in childhood Patient's upbringing and family relationship When patient first experienced difficulties Education and occupational history How patient has functioned in the past--best and worst qualitative ranges Specific clinical history Number and dates of previous hospitalizations and OPD treatment Previous lengths of stay Clinical conditions at past hospitalizations Past precipitants as clues to future areas of difficulty What succeeded and what did not succeed in past treatment plans History of treatment compliance, including medication history
The Social Index This index focuses on the social relationships of the patient, including family, friends, and others in the patient's psychosocial environment.The Social Index helps
Outlines of a Focused Assessment: Symptoms, Stressors, Supports
149
identify areas of support and stress.The first area to be examined is the patient's family relationships.With which family members is the patient involved? Are there estrangements? Which relationships are benign, which neglectful, and which malevolent? Is there a family psychiatric history? Are there other major stressors on the family or other family members requiring assistance? Is the patient married or divorced? Does the patient have children, and of what ages? Does the patient have relationships with friends, sexual partners, companions, probation officers, employers, or others? What are the qualities of those relationships? Next, community and organization affiliations should be noted. Does the patient attend church? Are there any clubs or organized groups, such as a veterans' group or Elk's Club, with which the patient is or has been involved? Finally, the Social Index looks for any special social responsibilities or stresses that should be noted. These include dependents and specific commitments by the patient.
Elements of the Social Index Social relationships--family,friends, others in psychosocial environment Areas of support and strength Benign or dysfunctional family relationships Family psychiatric history Major stresses in family Quality of relationships in patient's world Social structure--friends, organizations, religious affiliations
The Sufficiency Index The Sufficiency Index is used to determine the extent to which the patient is able to operate autonomously and effectively and the extent to which assistance and support are required. The first area to be assessed is the patient's current living situation outside of the hospital.What is the quality of these living arrangements?Will the patient live alone? If not, with w h o m will the patient live? Do improved housing arrangements need to be sought? Can the patient maintain a clean and safe living environment? The Sufficiency Index also evaluates the patient's vocational capacity and economic situation. Is a program necessary to help the patient return to work? Can the patient hold a job? If not, how will the patient structure his time? What is the patient's economic situation? Can the patient sustain himself financially? What are the sources of economic support? Are benefits and entitlements appropriate? Can the
150
Psychiatric H o m e Care: Clinical and E c o n o m i c Dimensions
patient access these independently or is assistance necessary? Does the patient know how to budget? Two additional areas to be examined by the Sufficiency Index are transportation and communication. Can the patient travel independently, or is assistance with transportation required? Does the patient speak a foreign language? Can the patient read, or is literacy a problem? A final area that needs to be explored is if the patient can manage activities of daily living.The Sufficiency Index assesses the patient's ability to handle shopping, cooking, baking, nutrition, hygiene, and other pertinent areas of self-care.
Elements of the Sufficiency Index Extent to which the patient is able to operate autonomously and effectively, and the extent to which assistance and support are required Current riving situation outside of hospital Quality of the domicile--cleanriness, safety Vocational capacity Economic situation--Sources of support Way in which time is structured Appropriateness of benefits and entitlements Can patient access needed benefit and entitlements independently? Can patient budget travel independently? Communication and literacy abilities
Designing and Maintaining a Behaviorally Anchored Treatment Plan
TARGETING THE BEHAVIORS THAT NEED CHANGE Developing an effective treatment plan requires that the service provider and the patient come to an agreement on those behaviors that will be the target for change. This is a process that calls on the clinical and interviewing skills of the clinician. It requires that the clinician have a fundamental grasp of the particular illness, its natural course, and recommended treatments. The clinician must also serve as educator and advocate.This necessitates an ability to remain focused on the salient clinical issues while trying to engage a client who is in acute stress. Often this means the clinician must suspend his or her own set of priorities in favor of the patient's priorities. The procedures and model charts presented below have been adapted from a community residence program with a philosophy of psychiatric rehabilitation.The instructions are part of an in-service training program for all residential staff.Where appropriate, they have been modified for a home-care setting. The purpose of setting goals is to establish measurable changes in the patient's behavior in each relevant domain. This process that involves the patient, family members, and other providers of care and support. It begins with the patient and is often conceptualized as a process of narrowing the focus from general areas of attention to long-term goals, then down to smaller changes or objectives. The first round of the process results in the first set of objectives, with time frames associated with each objective.Through an iterative process, objectives are modified as they are achieved, and new objectives are identified. Even though the paper result is fixed, this process is in fact a dynamic one. Subtle changes occur during each visit with the patient and conversation with other providers. Feedback from the patient, Psychiatric Home Care: Clinical and Economic Dimensions
Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
151
152
Psychiatric Home Care: Clinical and Economic Dimensions
family, and providers leads to a fuller understanding of the clinical priorities and the patient's resources.
The Geology of Goals and Objectives Top Level:Broad functional domains of concern Middle level:Long-term goals Goals are longer and more abstract than objectives and generally cover a longer period of time. Bottom level: Intermediate objectives (substrata of goals) Concrete, observable,and measurable behaviors that are reviewed with shorter frames of reference.
Identifying General Domains of Functioning The first step or level in developing an effective treatment plan is establishing the general areas needing change (e.g., clinical, social, employment). These "domains" should flow clearly and logically from the assessment of the patient's clinical and social functioning.The residential program from which these procedures were adapted identifies three steps in establishing these general statements: 9 Establish the skills needed by the client in order to move into his/her environment of choice. 9 Determine which of the needed skills the client already hasmand employs. 9 Delineate the barriers that exist to the client acquiring and/or employing the necessary skills.
Setting Goals This is the second level of establishing the targets for change. Here the clinician, working with the patient, simply continues the process of narrowing the focus of intervention. The instructions from the residential program offer several points to keep in mind while setting goals: 9 G o a l p r i o r i t i e s . Which goals are necessary in order for others to be achieved?
Are there goals that require antecedent goals? Do certain goals stand in the way of achieving a secondary goal? 9 A c h i e u a b i l i t y . Are some goals more readily accessible to the patient? The clinician will want to build on successful achievement of goals, which breeds more success.
Designing and Maintaining a Behaviorally Anchored Treatment Plan
153
Which are the goals the patient sees as most rewarding, most desirable, and of highest priority? V a r i a t i o n . When possible, it is best to strive for balance in the goals set. For example, if all the goals selected require high degrees of effort, both the patient and the clinician can feel overwhelmed. The clinician should try to identify multiple resources for achieving the goals so as not to overtax one resource (friend, agency, family member) and risk losing this resource entirely as an effective change agent.
9 Preference.
9
Establishing Behaviorally Stated Objectives Just as the domains can be expressed as a set of long-term goals, the goals can be further reduced to a series of objectives. These are measurable, calendar-linked changes of behavior that express the patient's clinical priorities. Again, the residential program offers guidelines. Clinicians should consider the patient's functioning with regard to the targeted behavior, and from this baseline determine the first step that is small enough to be readily achievable. This becomes the first objective. As with every subsequent goal, objective, subobjective, and revised goal, this first objective should be tailored to the current point in time, taking into account all that is known about the patient (motivation, strengths, fears, other skills, outside resources, the clinician's relationship with the patient, etc.).This is the heart of the iterative process of setting objectives. Once an objective is met, this process repeats itself." evaluating resources, defining the target behaviors, setting a time line, etc. In its handbook for staff, the residential program has identified two broad categories of objectives: functional and insight. The functional objectives are easily articulated as changes in behavior or actions on the part of the patient. Once can quantify hours of work outside of the house, rates of compliance with drug regimen, etc. Defining goals in which the targets are changes in the patient's understanding of the illness or changes in affect is somewhat more difficult, but it can be done. As a short-hand device to remember the critical elements required in defining goals, the residential program has devised the "ABCs" of goal setting. These are the elements that should appear in each statement about goals: Audience: The resident Behavior: Always observable, measurable Condition: The context or situation in which the resident will perform the desired behavior Degree: Criteria for determining that the goal has been achieved; usually a number expressing how much, how often, etc.
154
Psychiatric Home Care: Clinical and Economic Dimensions
Properly designed treatment goals identify all of the A, B, C, and D elements, as seen in the examples of functional objectives below: 9 Resident will attend at least 90 AA meetings in 90 days without prompting or assistance from home-care staff. Audience: R e s i d e n t . . . Behavior:Will a t t e n d . . . Condition:Without prompting or assistance... Degree: At least 90 AA m e e t i n g s . . . 9 Resident will exercise during evening hours at least 45 minutes per day, 4 days per week, for 3 consecutive weeks. Audience: R e s i d e n t . . . Behavior:Will exercise... Condition: During evening h o u r s . . . Degree:At least 45 minutes/day, 4 days/week, for 3 w e e k s . . . 9 Resident will participate in at least four nonstructured, self-initiated nondrugrelated leisure activities each week for four consecutive weeks. Audience: R e s i d e n t . . . Behavior:Will participate... Condition: Nonstructured, self-initiated nondrug-related leisure activities... Degree: Four per week for four w e e k s . . . With insight-oriented objectives, the audience is still the client. The behavioral components of insight-oriented objectives are the patient's verbal descriptions.The assumption here is that the ability to articulate these feelings and observations represents intermediate goals in the patient's changing behavior. Here are some examples: 9 Patient describes feeling about parents' abandonment, with prompting by counselor, following each family visit. Audience: P a t i e n t . . . Behavior: Describes feelings... Condition:With p r o m p t i n g . . . Degree: Following each family v i s i t . . . 9 Patient is able to report increase in auditory hallucinations,without queries from home-care worker, whenever this occurs over the course of the next 12 months. Audience: P a t i e n t . . . Behavior: Reports increase in hallucinations... Condition:Without q u e r i e s . . . Degree:Whenever this o c c u r s . . .
Designing and Maintaining a Behaviorally Anchored Treatment Plan
PREPARING
155
SERVICE PLANS
The case manager should be able to summarize both the goals selected and the rationale behind each goal. Once these goals and objectives are articulated, the next step is to identify the resources available to advance toward these goals. This is the process of planning the services needed. W h e n well-written, service plans leave little ambiguity about the who, what, where, and w h e n regarding the agents for change. The fundamental principles of service planning are derived directly from the task of setting goals and objectives: 9 Involve the patient from the beginning. 9 Define the goals and objectives in behavioral terms. 9 Establish a baseline of behaviors. 9 Define the interventions in behavioral terms. Beyond these principles in c o m m o n with the goal-setting exercise, a good service plan sets out details on the methods and agents of change: 9 Methods are spelled out clearly 9 The agents for change (e.g., other providers, the home-care worker) are identified next to each method. 9 Review dates are established. W h e n all of these elements are included in a treatment plan, there is no doubt as to the client behaviors that have been targeted for change, who will be providing the various services, or where these services will be offered.
This Page Intentionally Left Blank
A Syllabusfor Intensive Case Management Training
The primary mission of home-based behavioral care is to prevent relapse and successfully maintain patients with psychiatric disorders in the community. This requires a roster of case management skills, including the following: 9 setting individual rehabilitation goals and counseling around these goals 9 counseling around traditional daily living skills--personal hygiene, menu planning, personal budgeting, and so on 9 providing assistance with treatment compliance 9 helping to structure free time 9 coordinating services among all providers 9 educating the family and/or network 9 providing advocacy to secure resources related to personal goals The training components presented on the following pages are designed to prepare seasoned clinicians to handle home-based psychiatric care by providing them with the skills and philosophy associated with assertive clinical case management. Intensive training in the concepts, elements, and nuances of home-based psychiatric care is essential for providers just entering the arena of behavioral home care. It also is a quick way to hone the skills of those already working in the behavioral homecare field.
TRAINING OBJECTIVES Behaviorally oriented training is designed to give the clinical staff the necessary skills to manage the psychiatric disorders most represented in the community in which Psychiatric Home Care: Clinical and Economic Dimensions
Copyright 1999 by Academic Press. All rights of reproduction in any form reserved.
157
158
Psychiatric Home Care: Clinical and Economic Dimensions
they work.Toward that end, training should cover a range of clinical considerations, including the following: 9 the natural course of the major psychiatric disorders (e.g. affective disorders, both acute and long-term, schizophrenia and schizoaffective disorders, borderline personality) 9 proven pharmacological and social interventionsmand their interactions 9 strageties to improve treatment compliance Those conducting the training should include the following: 9 psychiatrists experienced with the patient population 9 nonphysician professionals experienced in community-based settings (such as community residences and public-sector case management programs) and familiar with varied aspects of home-based psychiatric care 9 consumers of psychiatric services The training offered can be delivered through various media, including: 9 lectures 9 group discussions 9 clinical articles 9 videotapes
TRAINING
CURRICULUM
AND OBJECTIVES
Intensive clinical training can be provided within a 2-day period. This training should cover the following subjects, specified here with their educational objectives.
The Philosophy of Home-Based Care
Objective: Introduce
the student to a philosophy of intensive aftercare. Too many psychiatric relapses are the result of inadequate aftercare. Home-based care should be structured to maximize the patient's compliance with treatment by defining reasonable treatment plans and by assertive case management techniques. Mental health professionals based in the community can provide quality clinical care at the patient's residence during acute and subacute phases of psychiatric incidents.
A History of Clinical Case Management Services
Objective: Provide the student with a context for understanding clinical case management services.
A Syllabus for Intensive Case Management Training
159
This session serves to introduce the trainee to case management services as they have developed in the public sector. Selected readings from clinical journals can help the student identify the most effective,"field-tested" interventions. Trainees should be given a rudimentary knowledge of the concept of"negotiating" with the client to establish behaviorally linked treatment plans.
Psychiatric Rehabilitation Principles: The Patient as Active Agent
Objective: Prepare the student to apply conventional counseling skills to help the client take an active role in rehabilitation. This session focuses on the fundamentals of a client-driven rehabilitation philosophy. The student should be presented with the basics of setting goals and contracting with the client; exploring client values; providing counseling in a psychiatric rehabilitation context; acting as advocate, and so on. Readings from the psychiatric rehabilitation literature and the nonpsychiatric rehabilitation field should be selected to reinforce the principles given.
High-Risk Factors in a Community Setting: Noncompliance, Transition Periods
Objective: Heighten the student's awareness of high-risk factors that derail recovery and provide them with strategies to address these factors. Subjects covered in this session should include information on accelerating cycles of noncompliance and decompensation among patients with affective disorders who do not comply with medication regimens; strategies to improve compliance; the importance of continuity of care; the use of intensive interventions such as visiting nurses and crisis teams. Related readings should come from current refereed journals such as the Journal of Psychiatric Services.
Persistent Psychotic Illness from a Patient's Perspective
Objective: Give the student a better understanding of the dysfunctions associated with these psychiatric disorders. This session should be led by both a clinical professional and one or more clientsmpatients who are active players in setting their treatment goals and working towards them. This informs students of the importance of the patient's input. Training may be supplemented by published first-person accounts of recovery.
160
PsychiatricHome Care: Clinical and Economic Dimensions
Engaging Families as Allies in Treatment: Helping Families "Recover" and Identifying the Supports They Need
Objective: Acquaint the student with strategies for securing family support of the recover,/process, including educating the family about psychiatric illnesses. This session should be presented by social workers who have experience running family support groups.Areas of focus include the importance of"natural" supports available to the patient, the"extended trauma" suffered by families of those with psychiatric illnesses, and ways in which the families themselves can derive support. Coordinating Services among Several Providers-Psychiatrists, Day Hospitals, Inpatient Services, Residential Programs
Objective: Improve the student's ability to negotiate for and coordinate other professional services on behalf of their patients. An effective case manager in the community has to wear many hats, including those of counselor, advocate, broker, and marketer, as well as clinician. This session makes explicit the various case management models and roles. Special emphasis should be given to the relationship between the case manager and the treating psychiatrist. Engaging a Client in an Extramural Setting
Objective: Impart to the student assertive clinical strategies relevant to homebased care. Home-based care requires the clinician to be available for patients during acute phases of the illness, as well as during early periods of remission. It also requires frequent contact on the patient's own "turf," a concept at odds with traditional office sessions. Home-based work requires an active, flexible clinician.This session focuses on strategies--starting with establishing a therapeutic relationship before the client leaves an inpatient setting--that allow the clinician to be available without becoming a substitute for the client's "natural" supports.
Index
Advocacy, 4 Aftercare systems, 3 Ambulatory behavioral health organizations, 16 Apartment programs, 21 Assessment, 23, 31,145-150, 152 clinical index, 146-147 historical index, 148 ongoing assessment, 45-47 patient profiles, 32, 45-47 in patient's home setting, 24-25 psychosocial assessment, 145-150 short-term assessment, 31-32 social index, 148-149 sufficiency index, 149-150 At-home psychiatric care. See Home-based psychiatric care
Behavioral managed care. See Managed care Billing options, 125-133
Capitation, home-based service, 132 Case management case manager-psychiatrist collaboration, 76 clinical case management, 4 nursing case management, 68 Case manager-psychiatrist collaboration, 76 Case rate (payment), 129-130 Case studies collaboration between social worker and psychiatrist, 78-85
Family Response Team (FRT), 94-97 life-cycle crisis, 95 paraprofessionals in home-based care, 141-142 repetitive crisis, 96 situational crisis, 94 stockpile crisis, 96-97 Child welfare, integrated behavioral health organization, 113-133 Choate Family Team (CFT) history, 114 integrating managed care and public sector, 121-125 outcomes, 120-121 referral profiles, 117-120 Choate Health management Inc. (CHMI), 114 Clinical case management, 4 Clinical index, 146-147 Cognitive therapy, 89 Collaboration, between social worker and psychiatrist, 75-85 Comfort, office-based services, 22 Commercial home-health agencies, as homebased care providers, 13-15 Communication, within treatment team, 76 Community support, 54-56 Control, office-based services, 22 Cost effectiveness, home health care, 71 Crisis, described, 94 Curriculum, home-based psychiatric training, 158-160
161
162
Index
Depression, social isolation and, 55
Economy, off%e-based services, 22 Education, for paraprofessionals in home-care, 138-140 Extended recovery program, collaboration between social worker and psychiatrist, 75-85
Family, as caregiver, 99-100 Family education, 47, 48-49, 67 Family Response Team (FRT), 90-97 basic assumptions, 91 case studies, 94-97 interventions, 91-93 protocols, 91 Family service organizations, as home-based care providers, 15-16 Family support team, child welfare, 113-133 Family therapy, history, 88-89 Fee-for-service model, 131-132 Financial reimbursement, 125-133 FRT. See Family Response Team
Goals, home-based psychiatric care, 40-42, 151-155
Historical index, 148 Home-based psychiatric care advantages, 23-24 ambulatory behavioral health organizations, 16 assessment, 23, 24-25, 31,145-150, 152 capitation, 132 case management skills needed, 157 case studies, 78-85, 94-97 clinical issues, 19-36 collaboration between social worker and psychiatrist, 75-85 commercial home-health agencies as providers, 13-15 contraindications for, 29-31, 60 cost comparisons, 71 crisis intervention, 31
extended recovery program, 75-85 families as caregivers, 99-110 Family Response Team (FIkT), 90-97 family service organizations as providers, 15-16 family support team, 113-133 fiscal reimbursement, 125-132 goals, 40-42, 151-155 history, 20-21 hospitals, interface with, 64-73 hospitals as providers, 12-13 indications for, 24-29, 60 integrated behavioral health organization, 14, 17, 113-133 interventions, 31-33, 61-64, 91-93, 151-155 level of care criteria, 123-125 in managed care context, 5, 33-35 off%e-based and, 35, 64-66 ongoing, 27-29, 32-33 open issues in, 72-73 outcomes, 69, 77,120-121 outpatient behavioral health care organizations, 16-17 paraprofessionals in, 135-143 partnering with families and nonpsychiatric providers, 67-68 patient profdes, 32, 43-56, 61-64 patient satisfaction, 71-72 payment models, 125-132 philosophy, 158 positive factors in, 72 principles, 42-56 psychiatric hospitals, interface with, 64-73 psychosocial assessment, 145-150 pubhc child welfare, 113-133 rehabilitation programs, 15-16 reintegration, 77-78 social worker, collaboration with psychiatrist, 75-85 staffing, 34, 68-69 training, 137-140,157-160 transference reactions, 29-30 transition between off%e-based care and, 35, 66 treatment plan, developing, 151-155 utilization patterns, 69-72 Visiting Nurse Associations, 11, 15 Home-care companies, 14 Home-care paraprofessionals. See Paraprofessionals Home-care team, 68
Index Hospitals, 3 as home-based care providers, 12-13 with psychiatric units, 12 Hourly rate payment, 131-132
In-home psychiatric care. See Home-based psychiatric care Integrated behavioral health organization, 14,17, 113-133 Integrated provider organizations (IPOs), 17 Interventions, 61-64 long-term high-intensity treatment, 63-64 long-term low-intensity treatment, 63 monitoring, 33 ongoing home-based treatment, 33 ongoing low-intensity outreach, 32-33 short-term high-intensity treatment, 62 short-term low-intensity treatment, 61-62 support, 33 treatment plan, developing, 151-155 Isolation depression and, 55 of parent caregivers, 103-106
KK_R., 5
Legislation,"parity bill" (Htk 3666), 9 Life-cycle crisis, 95
Maintenance, as goal of home-based care, 42 Managed care behavioral managed care, 5-7 development of, 3-4 home-based psychiatric care and, 33-35 public child welfare integrated with, 121-125 transferring public sector models to, 114-117 Manic-depressive illness, national expenditure for, 2 Manipulativeness, home-based psychiatric care, 30-31 Medco MCO, 5 Medicaid, 8 Mental health services. See Psychiatric services Mental hospitals. See Psychiatric hospitals Merit, 5
163
National Alliance for the Mentally Ill (NAMI), 49 Noncompliance. See Treatment compliance Nurse psychiatric, 68 Visiting Nurse Associations, 11, 15 Nursing case management, 68
Office-based psychiatric services advantages, 21-22 collaborating with, 64-66 cost, 19 transition to home-based care, 35, 66 Outpatient behavioral health care organizations, 16-17
PACT (Program of Assertive Community Treatment), 6, 20-21 Paraprofessionals case study, 141-142 competencies needed by, 136-137 employment opportunities, 140 service delivery, 140-141 training, 137-140,157-160 Parents, family as caregiver, 99-110 Parent support group, 101-110 "Parity bill" (HIL 3666), 9 Patient compliance. See Treatment compliance Patient education, 67 patient profiles, 47-49, 52-54 Patient profiles, 43-56 assessment, 32, 45-47 patient education, 47-49, 52-54 short-term assessment, 32 structured daily activities, 50-52 therapeutic alliance, 43-45 treatment compliance, 49-51 Patient satisfaction, home health care, 71-72 Payment models, 125-133 Per diem payment, 127-128 Per-session rate, 128-129 Physicians, home-based treatment time, 70 Preventive psychiatry, 88 Privacy, office-based services, 22 Private sector, 3 Privatization, of public psychiatry, 8-9 Program of Assertive Community Treatment (PACT), 6, 20-21
164
Index
Psychiatric home care. See Home-based psychiatric care Psychiatric hospitals, 3 as home-based care providers, 12-13 home care's interface with, 64-73 Psychiatric nurse, 68 Psychiatric services aftercare systems, 3 clinical case management, 4 economic history, 1-9 future of, 17-18 home-based see Home-based psychiatric care hospitals, 3 national expenditures, 2 office-based see Office-based psychiatric services private sector, 3 public sector, 3 transformation, 1 Psychiatric social worker. See Social worker Psychiatrist, collaboration with social worker in extended recovery program, 75-85 Psychosocial assessment, 145-150, 152 Psychotic process, described, 77-78 Public child welfare, integrated behavioral health organization, 113-133 Public psychiatry, privatization, 8-9 Public sector, 3, 4
Rates of payment, 125-133 Recovery, as goal of home-based care, 41-42 Rehabilitation programs, 15-16 Reimbursement, 125-133 Reintegration, 77-78 Relapse prevention, as goal of home-based care, 42 "Reluctant patient," home-care for, 23-24, 26-27 Repetitive crisis, 95-96 Responsibility home-based services, 24 office-based services, 22
Schizophrenia in-home family psychoeducation, 21 national expenditure for, 2 recovery, defining, 18 Security, office-based services, 22 Seriously and persistently mentally ill (SPMI), 16, 73 Situational crisis, 94 Social index, 148-149 Socialization home-based services, 23 office-based services, 22-23 Social skills, office-based services, 23 Social worker, 68 collaboration with psychiatrist, extended recovery program, 75-85 Stabilization, as goal of home-based care, 40-41 Staffing, 34 Stockpile crisis, 96-97 Structure, office-based services, 22 Sufficiency index, 149-150 Supported housing, 21 Support services, 54-56
Therapeutic alliance, patient profiles, 43-45 Training, for paraprofessionals in home-care, 138-140, 157-160 Transference reactions, home-based care and, 29-30 Treatment compliance, 28 patient profiles, 49-51
Vertical integration, 5 Visiting Nurse Associations (VNAs), 11, 15
Weekly rate, payment model, 129