THE TRICENTRAL PALLIATIVE CARE PROGRAM TOOLKIT Richard D Brumley, M.D Kristine Hillary, M.S.N., R.N.P Copyright © 2002 by Brumley/Hillary 1st edition Copyright under the Uniform Copyright Convention All rights reserved No part of this toolkit may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publishers ABOUT THE AUTHORS Richard D Brumley, M.D Dr Richard Brumley, M.D., is the Medical Director of Kaiser Permanente Hospice and Home Health Department for the TriCentral Service Area in Downey, California He is residency trained in Family Medicine and is board-certified in Hospice and Palliative Medicine As an Associate Clinical Professor at the University of California, Irvine, School of Medicine, he has instructed Family Practice residents in the importance of hospice and home health services He has been active in the promotion of hospice and pain and symptom control for over 20 years He is the principal investigator for a Kaiser Permanente project, supported by the Garfield Memorial Fund, to replicate the TriCentral Palliative Care (TCPC) Program in Kaiser sites in Colorado and Hawaii He also was principal investigator for a prior project that evaluated the effectiveness of the TCPC Program In 2001, he and his colleague and Toolkit co-author, Kristine Hillary, were co-awarded a Faculty Scholarship by the Soros Foundation’s Project on Death in America for work in palliative care Kristine Hillary, M.S.N., R.N.P Kristine Hillary is the Director of Home Health and Hospice for Kaiser Permanente, TriCentral Service Area in Downey, California Ms Hillary graduated in 1971 from Lutheran Deaconess Hospital School of Nursing in Minneapolis, Minnesota She holds a BSN and MSN from California State University at Los Angeles and returned to CSULA in 2000 for post-master’s certification as a nurse practitioner The beginning of her nursing career was spent in acute hospital settings, both in general medical-surgical and intensive care units, as a staff nurse and supervisor She has worked as a clinician and administrator in hospice and palliative care for the past 15 years Ms Hillary has participated in several research projects related to care and decision-making at the end of life and has lectured frequently on developing a home- based model of palliative care Contact Information We welcome your questions, your suggestions for improvement, and your feedback regarding this manual’s usefulness Here’s how to contact us: Richard D Brumley, M.D Kaiser Permanente TriCentral Service Area 12200 Bellflower Blvd Downey, CA 90242 (562) 622-4246; Fax (562) 622-4146 richard.d.brumley@kp.org Kristine Hillary, M.S.N., R.N.P Kaiser Permanente TriCentral Service Area 12200 Bellflower Blvd Downey, CA 90242 (562) 622-4062; Fax (562) 622-4146 KAHillary@scal.kp.org TABLE OF CONTENTS Acknowledgements Chapter Introducing the TriCentral Palliative Care Program The Need for a New Model of End-of-Life Care Kaiser Permanente and the TriCentral Service Area TriCentral’s Palliative Care Program About this Toolkit Who Should Use this Toolkit Chapter Understanding Palliative Care and the TriCentral PC Program What is Palliative Care? Core Components of the TriCentral Palliative Care Program How the TCPC Program is Similar to and Different from Hospice Care Integration of the TCPC Program with the Traditional Healthcare Model Chapter Building A Palliative Care Program Conduct a Needs Assessment Establish Leadership Develop Program Policies and Procedures Identify Barriers to Implementation - and Strategies to Overcome Them Craft a Business Plan Chapter TriCentral Palliative Care Program Operations Staffing Patient Enrollment Care Planning Patient and Family Services Patient Discharge Chapter Quality Management Plan Purpose and Functions of the Plan Quality Assessment Performance Improvement Division and Regional Indicators and Indicator Worksheets Chapter Financing and Reimbursement Capitated Managed Care Organizations TCPC Program Financing Financing for Community-Based Home Health Agencies References Appendix TriCentral Palliative Care Program Brochure Palliative Performance Scale Telephone Screening Tool End-of-Life Care Checklist Kaiser Permanente Home Health Quality Management Program Description TriCentral Palliative Care Performance Assessment and Improvement Plan Home Health Pain Standards Management of Pain: Home Health Indicator Worksheet Patient Satisfaction Survey ACKNOWLEDGEMENTS This toolkit is made possible through the immeasurable contributions of a collective group of expert practitioners and organizations dedicated to improving end-of-life care: • Kaiser Permanente members with advanced illness Kaiser Permanente TriCentral Administration Greg Adams, Senior Vice President, Operations Improvement Martin Gilbert , M.D., Bellflower Area Associate Medical Director Debbie Anderson, R.N., M.B.A., Continuing Care Leader Kaiser Permanente TriCentral Palliative Care Staff Kaiser Permanente Aging Network Richard Della Penna, M.D., Director, Kaiser Permanente Aging Network and Elder Care Edward Thomas, Director, Garfield Memorial Fund Partners in Care Foundation W June Simmons, L.C.S.W., Chief Executive Officer David A Cherin, Ph.D., Statistical Consultant Susan Enguidanos, M.S.W., Research Manager Paula M Jamison, Data Coordinator Soros Advisory Committee Joanne Lynn, M.D., Director, RAND Center to Improve Care of the Dying Editorial Assistance – Annie Rahman PROJECT ON DEATH IN AMERICA This toolkit was underwritten by a Soros Faculty Scholarship Award from the Project on Death in America of the Open Society Institute The Project on Death in America's Faculty Scholars Program was established to identify outstanding faculty and clinicians who are making a commitment to work in end-of-life care, and to support them in disseminating existing models of good care, developing new models for improving the care of the dying, and developing new approaches to the education of healthcare professionals about the care of dying patients and their families The mission of the Project on Death in America is to understand and transform the culture and experience of dying and bereavement through initiatives in research, scholarship, the humanities, and the arts, and to foster innovations in the provision of care, public education, professional education, and public policy CHAPTER INTRODUCING THE TRICENTRAL PALLIATIVE CARE PROGRAM THE NEED FOR A NEW MODEL OF END-OF-LIFE CARE There is no doubt that Americans are frustrated with traditional models of end-of-life care Frustrated and deeply conflicted, as evidenced by two polar-opposite patient-care movements in recent years One has been the movement led by some patient advocates to legalize physicianassisted suicide as a means of ending the suffering of terminally ill patients This movement, which in 1994 led to a voter-approved initiative in Oregon that legalized physician-assisted suicide under certain conditions, offers an extreme solution to a widespread problem of pain control and individual choice Gone are the days—only a few generations ago—when Grandma lingered in the back bedroom under the watchful care of the family doctor and took her final departure surrounded by family members and close friends Although most Americans still prefer to die at home, about 75% of deaths occur in hospitals and nursing homes (Lynn, 1996) Indeed, most terminally ill Americans experience what has been called an “Invisible Death” (Nuland, 1995) Sequestered in healthcare institutions, they spend their last days—sometimes their last weeks and months—isolated from family and friends, under the care of medical strangers who have had little or no instruction in the “art of dying.” For many of the dying, quality of life is sacrificed as they undergo “heroic” treatments that too often are medically futile and inappropriate, not to mention expensive An estimated 10% to 12% of our nation’s total health care costs each year are spent on end-of-life care (Scitovsky, 1994; Emanuel & Emanuel, 1994) “There is abundant evidence,” write physicians Meier and Morrison, “that the quality of life during the dying process is often poor, characterized by inadequately treated physical distress, fragmented care systems, poor to absent communication between doctors and patients and families, and enormous strains on family caregiver and support systems (1999:6).” These outcomes are in large part a result of our recent healthcare revolution, which has given rise to high-tech treatments that can extend life but also prolong dying, leaving some desperate souls to wonder “When is enough enough?” The opposite movement has not been political in nature but rather represents a shift in patient use of hospice care Medicare introduced the hospice program in 1983 as an optional benefit for achieving a “good death” that substitutes “high-touch” for high tech Widely recognized as effective in improving quality of life for terminally ill patients, hospice programs provide a range of services to control pain and provide comfort care, primarily to individuals in their own homes In the past decade, the number of Medicare patients receiving hospice care has more than doubled Today, about 20 percent of patients who die in the United States receive hospice care But average lengths of stay in hospice have been dropping, from 64 days in 1992 to 48 days in 1999 (NHO, 2000) Twenty-eight percent of Medicare patients in the hospice program receive hospice care for one week or less (GAO 2000) One reason for this shift in hospice use is patient unwillingness to forego curative care—and to abandon hope despite a poor prognosis The Medicare hospice program pays for medical procedures necessary for pain control and other symptom management, but not those aimed at curing the patient As a result, many seriously ill patients resist the program because “it shuns treatment and is a strong marker for imminent death (The Center to Improve Care of the Dying, 2000).” Healthcare officials speculate that with the development of new treatment options for life-threatening conditions, terminally ill patients are waiting to enroll in hospice programs until after they have exhausted all other alternatives (GAO, 2000) As one healthcare observer put it, “They are simply unwilling to promise to die on schedule.” This see-sawing between medically inappropriate care and too little care has prompted calls for change and for blended models of care that view “relief of suffering and cure of disease…as twin obligations of a medical profession that is truly dedicated to patient care (Cassell, 1982).” One such blended model—and the basis for this toolkit—is Kaiser Permanente’s TriCentral Palliative Care Program KAISER PERMANENTE AND THE TRICENTRAL SERVICE AREA Kaiser Permanente (KP), the nation’s largest not-for-profit health plan, is an integrated health delivery system that organizes and provides or coordinates members’ care, including preventive care, hospital and medical services, and pharmacy services Among the various managed care models, KP is considered a traditional group model HMO in that it is a not-for-profit healthcare system with its own staff and facilities, and with active involvement of physicians in the decision-making process that affects patient care KP’s mission is to provide affordable, high-quality healthcare services to improve the health of its members and the communities it serves KP serves 8.2 million members in nine states—California, Colorado, Georgia, Hawaii, Maryland, Ohio, Oregon, Virginia, Washington—and the District of Columbia KP serves the TriCentral area in Southern California through its medical centers in three communities: Bellflower, Baldwin Park, and Harbor City KP TriCentral serves an estimated 630,000 members who reside in the area; its palliative care and hospice programs are available to an additional 300,000 members who reside in neighboring communities TRICENTRAL’S PALLIATIVE CARE PROGRAM TriCentral’s Palliative Care (TCPC) Program was launched first as a pilot project in 1997 and then as a formal program in 1998 as a means of achieving balance in end-oflife care and helping seriously ill patients find peace and dignity between the extremes of too little care and too much The program was initiated as an alternative to KP’s hospice program, which like other hospice programs across the country, was being underused At TriCentral, average survival time for hospice patients was 48 days from the time of enrollment Twenty-six percent of these patients died within the first seven days of admission to the program; another 35 percent died in the remainder of the first month Many KP patients eligible for hospice care either refused services or were never referred to the program for a variety of reasons, including physician uncertainty in determining life expectancy, patient unwillingness to forego curative care (and hope), and other negative connotations of the word “hospice.” As a result, patients often died in acute-care hospital beds or intensive care units, sometimes following bouts of medically futile care In 1996 at TriCentral, 63% of the patients who died in the intensive care unit and 54% of those who died in acute medical beds had a primary or secondary diagnosis of one of three commonly fatal, incurable conditions: cancer, congestive heart failure (CHF), or chronic obstructive pulmonary disease (COPD) Frustrated and disturbed by these trends, we established the Palliative Care (PC) program, an outpatient service housed in our Home Health Department that offers improved care to dying patients and their families Modeled after KP’s hospice program in that it offers superb pain management and other comfort care in the patient’s home, the PC Program features three important modifications, all of them intended to promote timely referrals to the program: • Physicians are not required to give a six-month prognosis Recognizing that it is often difficult to estimate life expectancy, we relaxed referral guidelines Physicians are asked to refer any patient if they “would not be surprised if this patient died in the next year.” Thus, as a general rule, palliative care patients are accepted into the program with a prognosis of 12 months or less to live • While the Palliative Care Program emphasizes much improved pain control and other symptom management, patients not have to forego curative care, as they in hospice programs • Patients are assigned a palliative care physician who coordinates care from a variety of healthcare providers, including specialists and the patients' primary care physician, thus preventing the service fragmentation that often occurs in healthcare systems In addition to these design improvements, the program features five core components, each of which contributes to enhanced quality of care and patient quality of life These core components are: • an interdisciplinary team approach, focusing on the patient and family, with care provided by a core team consisting of a physician, nurse, and social worker, all with expertise in pain control, other symptom management, and psychosocial intervention • home visits by all team members, including physicians, to provide medical care, support, and education as needed by patients and their caregivers • ongoing care management to fill gaps in care and ensure that the patient’s medical, social, and spiritual needs are being met • telephone support via a toll-free number and after-hours home visits available 24 hours a day, seven days a week as needed by the patient • advanced care planning that empowers patients and their families to make informed decisions and choices about end-of-life care A recent external evaluation established that the TCPC Program met the complex physical, emotional, social, and spiritual needs of chronically ill patients at the end of life while improving the cost effectiveness of such care The evaluation, which compared 145 palliative care patients to a matched sample of 151 home-health KP patients, showed that the palliative care patients had comparatively fewer emergency department visits, inpatient days, skilled nursing days, and physician office visits (p