ࡱ> 5@ )bjbj22 XXo D JJJv pv (222{ $R߄X J{JJ22J"&2 2J22r`: x2j s/Jlt(xt0Zv7` 7\x 7 x F Jl J  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 Foundations 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-masters 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 manuals usefulness. Heres 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  HYPERLINK "mailto:KAHillary@scal.kp.org" KAHillary@scal.kp.org TABLE OF CONTENTS Acknowledgements Chapter 1 Introducing the TriCentral Palliative Care Program The Need for a New Model of End-of-Life Care Kaiser Permanente and the TriCentral Service Area TriCentrals Palliative Care Program About this Toolkit Who Should Use this Toolkit Chapter 2 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 3 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 4 TriCentral Palliative Care Program Operations Staffing Patient Enrollment Care Planning Patient and Family Services Patient Discharge Chapter 5 Quality Management Plan Purpose and Functions of the Plan Quality Assessment Performance Improvement Division and Regional Indicators and Indicator Worksheets Chapter 6 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 1 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 physician-assisted 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 daysonly a few generations agowhen 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 dayssometimes their last weeks and monthsisolated 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 nations 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 careand 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 diseaseas twin obligations of a medical profession that is truly dedicated to patient care (Cassell, 1982). One such blended modeland the basis for this toolkitis Kaiser Permanentes TriCentral Palliative Care Program. KAISER PERMANENTE AND THE TRICENTRAL SERVICE AREA Kaiser Permanente (KP), the nations 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. KPs 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 statesCalifornia, Colorado, Georgia, Hawaii, Maryland, Ohio, Oregon, Virginia, Washingtonand 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. TRICENTRALS PALLIATIVE CARE PROGRAM TriCentrals 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-of-life 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 KPs 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 KPs hospice program in that it offers superb pain management and other comfort care in the patients 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 do not have to forego curative care, as they do 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 patients 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<.0001), although they had more home care visits. When all service costsfor both inpatient and outpatient carewere considered, total average costs for TCPC patients were 45% lower than costs for the comparison group. While dollar signs are important at a time when healthcare costs are spiraling upward, policy makers, medical experts, and patient advocates agree that the push to improve care at the end of life centers around more than a question of money. Its also a question of personal values: Are the individuals preferences for care and treatment at the end of life being met? Here, as well, the TCPC Program has been successful. While improving the cost-effectiveness of care, the program has not sacrificed quality of care. Patient satisfaction and quality of life indicators, which were measured 60 days following patient enrollment, were significantly higher among TCPC patients than the comparison group, even though palliative care patients used significantly fewer in-patient services. These results reflect what palliative care experts have observed again and again: that in the end, what matters most is not necessarily more treatment, but rather quality of treatment. As another indicator of success, patient referrals have increased every year since the programs inception. Today, the programs average daily census is more than 80-90 patients. ABOUT THIS TOOLKIT As our programs reputation has grown, so too has interest in replicating it at other healthcare sites. Increasingly, were hearing directly from our colleagues what healthcare experts have been writing about: the need for new, more effective models of end-of-life care. This TriCentral Palliative Care Program Toolkit is our way of meeting this growing need. It presents a wide range of educational, technical-assistance, and other support materials that address every aspect of program development. Based on the materials used in the TCPC Program, the toolkit provides a blueprint for the program as well as guidelines for modifying it to fit a particular organizations structure and meet the needs of patients in the local community. WHO SHOULD USE THIS TOOLKIT The toolkit is targeted toward health and social service providers, including physicians, nurses, social workers, and allied health professionals, who want to establish within their healthcare organization an outpatient palliative care program based on the TCPC Program. Additionally, it provides helpful information to healthcare administrators who must provide budget approval for the new palliative care programs and to the health and social service professionals who will refer patients to the programs. The toolkit also serves as a reference manual for local, state, and national end-of-life care associations, for researchers and academics, and for foundations that support efforts to improve end-of-life care. Finally, the toolkit addresses patients through the marketing materials it includes. Program administrators can use these materials, in full or part, to inform patients about the Palliative Care Programs availability and special features.  CHAPTER 2 UNDERSTANDING PALLIATIVE CARE AND THE TRICENTRAL PC PROGRAM Palliative care programs are relatively new additions to the range of services available in our nations health care system. This chapter gives you a firm understanding of palliative care and the essential components of the TriCentral Palliative Care (TCPC) Program, both prerequisites for replicating this innovative model in other healthcare organizations. We start with a general definition of palliative care and then discuss how that definition is operationalized by the TCPC Program. We also present the core components of the TCPC Program and discuss how the program is similar to and yet different from most hospice programs. We close the chapter with a brief analysis of the differences between traditional models of care and the integrated model used by the TCPC Program. WHAT IS PALLIATIVE CARE? A General Definition The first palliative care program was so named by Dr. Balfour Mount of the Royal Victoria Hospital in Montreal, who chose the term to distinguish his program from hospice care. He was concerned that seriously ill patients would reject hospice because of the negative connotations associated with the word: To many, it had come to mean death and hopelessness. Palliative, from the Latin word pallium, which means to cloak or cover, connotes an action that ameliorates. Dr. Mount used the term to describe medical care that would alleviate the suffering of dying patients and ease their way towards end of life. Concerns still persist today that dying patients shun hospice care because of the name itself. And as it was for Dr. Mount, this concern continues to be a driving force in the development of palliative care programs; for whatever else it may be, palliative care is not hospice care. But then what exactly is it? No single definition of palliative care exists, largely because the programs that provide such care are relatively new innovations in the United States and hence are still evolving. Despite some variation, however, the definitions that appear in the literature sound an overall reassuring note of consensus that the term continues to be used much as Dr. Mount first intended. For our purposes, we use a definition put forth in 1997 by a multidisciplinary task force on palliative care sponsored by the Robert Wood Johnson Foundation. That definition: Palliative care is the comprehensive management of patients physical, psychological, social, spiritual, and existential needs. It is especially suited to the care of people with incurable, progressive illnesses (Last Acts, 1997). The TCPC Model In our practice at TriCentral, this definition is transformed into a specialized form of interdisciplinary health care that is designed to enhance comfort and improve the quality of a patients life as opposed to achieving a cure. We emphasize care that alleviates the physical, emotional, social, and spiritual discomforts of an individual in the last phases of life. Our treatment goals are pain control, symptom management, quality of life enhancements, and spiritual and emotional comfort for the patient and family. Remember that our palliative care program, like most such programs across the nation, was launched as an alternative to both hospice care and traditional care practices. On the one hand, patients, their families, and other advocates have expressed dismay with hospices service restrictions on curative care. On the other hand, when it comes to traditional medical care, these groups are appalled by the intrusive treatment that pummels so many dying patients and their families, prolonging their suffering. Among other intents, palliative care programs aim to restore some measure of choice and control to patients and families at a time when choice and control seem to be slipping away. TCPCs Mission The mission of the TCPC Program reflects a patient-centered approach to care. Our mission is to achieve the best possible quality of life for the patients through relief of suffering, control of symptoms, and restoration of functional capacity while remaining sensitive to personal, cultural, and religious values, beliefs, and practices. The Programs interdisciplinary healthcare team encourages, honors, and empowers patients and families by welcoming their leadership and collaboration in designing, evaluating and revising their palliative care journey. TCPC Program Goals The TCPC Program aims to: Respect and support patient preferences Improve pain and symptom control Prevent inappropriate emergency department and inpatient admissions Increase the number of advance directives completed in the population served Increase patient and family satisfaction with care Increase enrollment of patients benefiting from end-of-life programs Increase clinician knowledge of end-of-life programs Demonstrate cost effectiveness CORE COMPONENTS OF THE TRICENTRAL PALLIATIVE CARE PROGRAM Palliative care programs vary one from the other. Some are dedicated inpatient units within a medical center, others refer to healthcare teams that perform pain consults, and still others, like ours, are outpatient programs that target the homebound. Patient eligibility, staffing patterns, the types of services offeredall these program aspects are variables that each staff must decide upon. Ultimately, these decisions define the program. In our experience, the TCPC Program is defined by core features that work together in a particular way to achieve certain outcomesamong them, high patient and family satisfaction and cost-effective care. If you eliminate one or more core components or make substantially different substitutions, then your program may not achieve the same outcomes. Thus, for best results, the programs core components must remain intact, without modification. At the same time, you can modify virtually any other aspect of the program to suit the needs of your healthcare organization and its patients without compromising outcomes. The core components of the TCPC Program are as follows: The patient and family comprise the unit of care. An interdisciplinary team directs and provides care. Core team members are the patient and family plus a physician, nurse, and social worker. The teams health providers assess the physical, medical, psychological, social and spiritual needs of the patient and family. Based on the assessment, the team develops a plan of care to provide coordinated care that emphasizes supportive services. Home care is emphasized. Personal care services are available to support the patient and family. If needed, community-based services such as Meals-on-Wheels and In-Home Supportive Services are sought to help fill gaps in personal and home care. Pain and other symptom management is emphasized Comprehensive primary care is provided to manage underlying conditions with the goal of preventing acute exacerbation. Aggressive treatment of an acute exacerbation of illness is provided at the patients or familys request. Inpatient services are provided, when necessary, to ensure both appropriateness of care and continuity of care for patients who cannot be managed at home because of acute complications or because their family cannot manage terminal care for them at home. Telephone support via a toll-free number and after-hours home visits are available 24 hours a day, seven days a week as needed by the patient. Volunteers help provide support and assistance to patients and families. Bereavement services are provided to help the family cope with social and emotional needs following the death of the patient. Chapter 4, which presents procedures for the TCPC Program, describes in more detail how these core components are implemented. HOW THE TCPC PROGRAM IS SIMILAR TO AND DIFFERENT FROM HOSPICE CARE The TCPC Program is modeled after Kaiser Permanentes hospice program in that it targets seriously ill patients near the end of life and offers them superb pain management and other symptom control in the comfort of their home. Both programs emphasize high touch over high tech as they work to customize end-of-life care to match the patients and familys preferences and values. Both treat the whole patient, taking into consideration the persons physical needs as well as his or her social, emotional, and spiritual needs. For all their similarities, the TCPC and hospice programs have important differences. Part of the difference is regulatory: Kaiser Permanentes hospice program is designed to meet the federal regulatory guidelines for Medicare-approved hospice programs, while the TCPC Program is governed by Medicare regulations for home health services. From a patient standpoint, however, the most significant differences are in the admission criteria and the treatments available, with the TCPC Program offering more treatment options to a larger patient population than the hospice program. These enhancements, described below, are intended to prompt timely referrals to the TCPC Program. In the TCPC Program, physicians are not required to give a six-month prognosis, as they must for any hospice admission. Recognizing that it is often difficult to estimate life expectancy, referral guidelines are relaxed. Primary 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 TCPC Program emphasizes much improved pain control and other symptom management, patients do not have to forego curative care, as they do in the hospice program. 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. The charts on the following two pages give you a side-by-side comparison of the hospice program and the TCPC Program.  HOSPICEPALLIATIVE CAREHOSPICE ADMISSION CRITERIA The Patient: Is a member of the Kaiser Permanente Health Care Program. Has a life threatening illness with an expected prognosis of six months or less. Is not receiving potentially curative therapy. Agrees with emphasis of care in the home setting with short term inpatient care limited to: (a) symptom control not obtainable at home, (b) care through the terminal event, (c) respite care. Has a primary care person available to provide care, or to ensure that an appropriate caregiver is available to provide care when necessary. Is not currently being covered by the Skilled Nursing Benefit, or patient chooses to stop Skilled Nursing Benefit to receive Hospice care. Patient may not be receiving Medicare funded care for chronic renal failure. Completes Hospice consents. PALLIATIVE CARE ADMISSION CRITERIA The Patient: Is a member of the Kaiser Permanente Health Care Program. Has a life threatening illness with an expected prognosis of 12 months. Is homebound, requiring a considerable and taxing effort to leave. Has a deteriorating medical condition and is at risk for needing symptom management. Patient may have had 1-2 Emergency Department or Hospital admissions in the last year. Has a primary care person available to provide care, or to ensure that an appropriate caregiver is available to provide care when necessary. Agrees with emphasis of care in the home setting with short term inpatient care limited to: (a) symptom control not obtainable at home, (b) care through the terminal event. More aggressive therapy, if appropriate, may be provided by the primary physician in another care setting. Does not meet Hospice admission criteria: (a) Patient/Family have difficulty accepting the life threatening diagnosis and prognosis, (b) Patient/Family are not agreeable to stopping aggressive therapy, (c) Physician is uncertain if patient meets the Hospice admission criteria. Completes Home Health Department consents.  HOSPICEPALLIATIVE CARE HOSPICE PROVISION OF CARE AND TREATMENT OPTIONS The patient may or may not agree to a No Code Order. The patient/family or Palliative Care staff may call 911, but resuscitative care will be provided by emergency care personnel such as paramedics. Calling 911 is not encouraged. The cost of all services and care provided as a result is not a covered Hospice benefit. Under certain circumstances these costs may be covered by another Kaiser Foundation Health Plan benefit. The Hospice Physician is responsible for the patients care. The patient may choose to see the primary physician for care but treatments should be coordinated. Supportive care is emphasized. More comprehensive therapy may be provided but not encouraged such as: IVs, TPN, NGT, transfusions, palliative chemotherapy. Hospice Team Members include: Physician, Nurses, (RN and LVN), Social Worker. Additional services available if patient meets criteria include: Home Health Aide, Chaplain, Music Therapist, Volunteers, Homemaker, Physical Therapy, Occupational Therapy, Speech Therapy. Bereavement support is provided to surviving family unit. 24-hour after hours telephone support is provided. Durable Medical Equipment and Oxygen is provided under the Hospice benefit. Hospice Drug benefit is provided including prescription and over-the-counter medications required for symptom control. PALLIATIVE CARE PROVISION OF CARE AND TREATMENT OPTIONS The patient may or may not agree to a No Code Order. The patient/family or Palliative Care staff may call 911, but resuscitative care will be provided by emergency care personnel such as paramedics. Calling 911 is not encouraged. The cost of all services and care provided as a result is not a covered Hospice benefit. Under certain circumstances these costs may be covered by another Kaiser Foundation Health Plan benefit. The Palliative Care Physician and Primary Physician are jointly responsible for the patients care. Treatments should be coordinated. Supportive care is emphasized. More aggressive therapy may be provided by the primary physician. Palliative Care Team Members include: Physicians, Nurses, (RN and LVN), Social Worker. Additional services available if patient meets criteria include: Home Health Aide, Chaplain, Volunteers, Physical Therapy, Occupational Therapy, Speech Therapy. Bereavement support is provided to surviving family unit. 24-hour after hours telephone support is provided. Durable Medical Equipment and Oxygen is provided based on the patients Health Plan benefit. Prescriptions are provided under the patients Health Plan prescription drug benefit.  HOSPICE DISCHARGE CRITERIA Patient/Family seek curative therapy. Patient elects to receive Skilled Nursing Benefit for qualifying illness. The Hospice Physician is unable to certify that the patient has a terminal diagnosis with a six-month prognosis. The patient moves outside the Hospice catchment area. Patient may be referred to another Hospice Program if available. The Patient/Family do not agree with Hospice admission criteria. PALLIATIVE CARE DISCHARGE CRITERIA Patient converts to the Hospice benefit. Patient/Family do not agree with the Palliative Care admission criteria. Patient condition stabilizes or symptoms are under control with minimal risk of decline.  INTEGRATION OF THE TCPC PROGRAM WITH THE TRADITIONAL HEALTHCARE MODEL There is a tendency among health care providers to characterize palliative care programs in terms of what they are not: They are not hospice programs, nor are they traditional treatment programs that aim to achieve a cure. Defining palliative programs negatively in this way can lead to a distorted view of these programs as separate and set apart from other patient care programs. We lose sight of the connections between traditional care, palliative care, and hospice. In fact, the connections are quite strong. Under traditional models of care, curative and restorative therapy is emphasized during the acute and chronic phases of a patients illness, as depicted in Figure 1. Palliative care is seldomly provided during this period. Not until the very last phase of life, when the patients condition is clearly life threatening, are hospice services offered. By then, it is nearly impossible for the patient and family to benefit from the comfort care these programs provide. With this traditional model of care, there is an abrupt division between curative and restorative therapy for patients during acute and chronic phases of their illness and hospice care during their final stage of life. In an almost literal sense, this model forces seriously ill patients to chose sides. Often they experience this decision as a choice between less than ideal options; for as their illness progresses, what many of these patients want is a service that blends curative practices with comfort care. What they want, in other words, is palliative care. Continuum of Care Traditional   Figure 1 Adapted from Frank D. Ferris, 2000 In its consummate form, palliative care is most effective for patients and their families when it is seamlessly integrated across the health care continuum: initiated in the curative phase, continuing through the illness course, and culminating in the hospice trajectory, as depicted in Figure 2. With this integrated model of care, all patients diagnosed with a life-threatening illness are offered some degree of palliative care from the time of diagnosis. Often, only limited palliative services are offered during the acute phase of a patients illness, when most of the focus is on curative or restorative treatment. If the patients disease progresses, however, more palliative services are integrated into the patients care as needed. At the same time, the emphasis on curative and restorative therapies gradually diminishes. In contrast to the dichotomy that exists in traditional models of care, this integrated model blends curative and palliative care continuously across the continuum of care. Continuum of Care Optimal     Figure 2 Adapted from Frank D. Ferris, 2000 TCPCs Vision of Care The TCPC Program aims to achieve an integrated palliative care prototype with the "traditional" health care model, which results in the development of efficient pathways to care for specific patient populations across the health care continuum. A recent evaluation of the program demonstrates that this vision is being realized. This evaluation showed that by integrating palliative care into curative care practices earlier in the disease trajectory, chronically ill patients near the need of life received the services they needed and wantedpain and other symptom relief, emotional support, 24-hour medical support, and patient and family educationwhich enabled them to better manage their own care at home and reduced the need for inpatient and emergency services. The study compared 210 patients in the TCPC Program with a matched sample of 348 home health patients. Overall, TCPC patients had significantly fewer emergency room visits, hospital days, skilled nursing facility days, and physician visits, though they had more home health visits than the comparison group. The study demonstrates the ability of palliative care programs to effectively transfer end-of-life care from high-cost acute-care services to a lower cost home-based arena that allows patients to die in the comfort of their home. The findings suggest that palliative care programs may offer a more effective and compassionate model of care for those who are nearing end of life.  CHAPTER 3 BUILDING A PALLIATIVE CARE PROGRAM Clinicians with experience in end-of-life care often feel that establishing a palliative care program is not rocket science and is an effective way to manage care that will have positive outcomes for patients. These feelings by themselves are not sufficient to convince administrators and finance officers that launching a new program is a good business decision for the organization. And make no mistake - managed care is a business. Good ideas must be tied to sound business practices and quality management if they are going to get off the ground. Hospice programs have demonstrated their cost effectiveness, but this fact also is not sufficient reason for an organization to develop a palliative care program. A systematic approach to analyzing need, assessing feasibility, and evaluating cost effectiveness is an essential first step to establishing a program. Funds for a new palliative care program may need to be diverted from other care delivery sites, whose staff members are likely to advocate strongly for their programs. Counter arguments in favor of developing a palliative care program must be clear, concise, and compelling; they should underscore the new programs potential to improve quality of care and life, while reducing overall costs to the organization. For the program to be successful, it must be supported not only by a visionary clinician who sees its value but also by other stakeholders in the organization, including administrators, staff, patients, and their families. CONDUCT A NEEDS ASSESSMENT The first step is to determine whether there is a need within your service population for palliative care. National trends and statistics suggest there is a growing need for palliative care services. While most Americans would prefer to die at home, about 75% of deaths occur in hospitals and nursing homes (Lynn, 1996), where many patients receive medically futile, expensive care. Meantime, hospice programs, widely recognized as effective in improving quality of life for dying patients, go underutilized in part because seriously ill patients associate their services with imminent death (GAO, 2000). That an unprecedented number of health care institutions have launched palliative care programs in the past five years, that interest in these services continues to grow, that more than one in four of the nations teaching hospitals now offer palliative care clinical and educational programsall these recent developments suggest that the national trends are expressing a local phenomenon. Are there unmet needs for palliative care within your community and your institution? There are several ways you can find out: You can interview key informants, including healthcare staff in your institution, patients and their family members, as well as service providers in your community, to assess local perceptions of unmet service needs. You can conduct an inventory of community services currently available to seriously ill adults to identify any gaps in care. The service utilization data collected by your healthcare institution also can be used to assess patient needs for palliative care. At TriCentral, for example, we conducted in 1996 a small retrospective exploratory study at one medical center to determine whether, as we hypothesized, there were seriously ill patients who did not access end-of-life care through hospice, but still needed palliative care services. We searched the hospital data base for the number of deaths from cancer, heart disease, and lung disease in the previous year and the number of hospital days related to those deaths either on a general medicine/surgical unit or in the intensive care unit (ICU). We found that 63% of the patients who died in the ICU 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 health failure, or chronic obstructive pulmonary disease. Together, these patients accounted for more than 3,000 hospital days over 12 months. At the same time, our hospice program was underused, as terminally ill patients waited to enroll until they had exhausted all other options. Average survival time for hospice patients was 48 days from the time of enrollment. Twenty-six percent of these patients died within the first week of admission; another 35 percent died within the next three weeks. These findings supported two conclusions: 1) many very seriously ill patients were not accessing supportive end-of-life care at home, and 2) their cost of care at the end of life was very high. The question occurred to us: Wouldnt some of these patients prefer a blend of curative and palliative care, most of it delivered at home (and at less expense), if it were available to them? In 1997, we launched a palliative care pilot project to evaluate this question. ESTABLISH LEADERSHIP The next step is to identify key players within your organization who are interested in improving the quality of end-of-life care and are willing to explore new options for care delivery. One person can be a visionary and driving force, but successful innovations usually require a team effort. In their review of nine palliative care programs, the National Hospice and Palliative Care Organization and the Center for Advancement of Palliative Care note: At each site visited, committed, well-placed advocates were essential to the projects success. Their experience also suggests that having more than one champion is important because a programs development could be jeopardized if a single key advocate changes jobs or leaves the institution (2001:6). At TriCentral, our launch team was comprised of a physician, a nurse manager, and a supportive multidisciplinary team of hospice providers. Using statistical data from our needs assessment, this team presented both a vision and a business plan for adapting an existing hospice program to meet the needs of an underserved population. An internal Kaiser funding source, the Garfield Memorial Fund, concurred with the teams risk/benefit analysis and awarded funding for a one-year pilot test of the new program. The leadership team then reached out to other interested parties to form a network of supportive professionals both within and outside the organization. With this network still in place, the leadership team is able to call upon experts with other skill sets to assist in developing budgets, business plans, grant proposals, and other program components that make the dream of improved end-of-life care a reality. DEVELOP PROGRAM POLICIES AND PROCEDURES Most healthcare administrators want a detailed description of how your palliative care program will work before they will lend their support to the venture. Just as a blueprint provides a detailed picture of how a new building will look before it is built, so too a policies and procedures manual provides a picture of how a new program will operate before it is launched. To draft policies and procedures for your program, start from the beginning and move toward the end. Begin with a description of your programs basic structure: its mission, goals, and core components. Next describe your programs organizational structure, its staffing needs, and staff roles and responsibilities. Think next of the programs patients: Outline the referral process, present admission criteria, and describe the enrollment procedure. Include descriptions of the care planning process, the services available to patients and their families, and discharge procedures. Finally, present a plan for quality assurance and program evaluation. To help you get started, we have presented the policies and procedures for the TCPC Program in this Toolkit. In the previous chapter, we described our programs basic structure, including its mission, goals, and core components. In the following two chapters, we present detailed procedures for the TCPC Programfrom staffing to program evaluation. Feel free to use or adapt these policies and procedures for your program. IDENTIFY BARRIERS TO IMPLEMENTATION AND STRATEGIES TO OVERCOME THEM Organizations are as alike and unique as human beings. Similarly, group processes can be as straightforward or as complex as the individuals who make up the organization. It is vital to successfully launching a new program that the leaders understand the strengths, weaknesses, and idiosyncrasies of the organization or system in which they operate. Try to anticipate barriers to implementation so that you can develop strategies to minimize their impact or avoid them altogether. The following list of common barriers can be used to help your leadership team identify potential obstacles. The list of essential elements for change can help the team brainstorm possible solutions. The lists are a good starting point for a planning session that will be most effective if it also takes into account the organizations unique characteristics (Institute for Health Improvement). Common Barriers Studying the problem too long without acting Trying to get everyones agreement first Educating without changing structures or expectations Tackling everything at once Measuring nothing or everything Failing to build support for replication Assuming that the status quo is OK More Barriers to Change Lack of such resources as time and commitment Resistance to change Lack of senior leadership support or physician champion Lack of cooperation from other agencies, providers, departments, and facilities Ineffective teams Burdensome data collection Essential Elements for Change Effort Define the problem Define the target population Define effective treatment strategies and establish procedural guidelines Establish performance measures; set goals Define effective system changes and interventions Develop leadership and system change strategy CRAFT A BUSINESS PLAN To sell your program idea to administrators and financial officers, you will need a business plan, which outlines the new programs prospects, identifying both potential risks and benefits. A business plan gives you a format for presenting the work you have accomplished in a professional manner that lends credibility to the project. Here is where you report the findings from your needs assessment, outline your programs goals, and describe its procedures and policies. Here is also where you discuss the implementation process, including strategies for overcoming potential obstacles. Information pertaining to finances, program evaluation, and quality managementtopics addressed in chapters 5 and 6 of this toolkitshould also be presented in the business plan. Before you start writing, gather all the information you want to report in the business plan and then draft an outline. This checklist will help get you started: Organizational description, including name, location, mission, patient population Management and organization, including organizational chart, key management, consultants, and advisors Justification for a palliative care program, including results from your needs assessment Services and implementation plan, including operations plan, policies and procedures, and program evaluation and quality management plan Marketing plan, including marketing materials Financial information, including budget, reimbursement streams, and other funding sources It is best to wait and write the beginning of the business planthe executive summaryafter you have written all other parts. While a complete business plan may run 30-40 pages, the executive summary should be no more than two pages; it is the business plan in the most concise form possible. The primary purpose of the executive summary is to entice busy administrators to delve further into the details of the business plan. The Center for the Advancement for Palliative Care offers additional tools for drafting business plans. Visit their Web site at www.capc.org.  CHAPTER 4 TRICENTAL PALLIATIVE CARE PROGRAM OPERATIONS This section presents operational procedures for the TriCentral Palliative Care (TCPC) Program. This detailed description is intended to serve as a blueprint for replicating the program in other healthcare organizations. Starting with a discussion of staffing requirements, this section goes on to describe the entire care process, from patient enrollment to discharge. As you read, bear in mind that we are describing how the Palliative Care Program works at Kaiser Permanente. You may want to modify the program to suit the needs of your healthcare organization and its patients. However, the core components of the program (presented in Chapter 2) should remain intact in order to achieve the same positive outcomes. STAFFING Interdisciplinary Team The TCPC Program uses an interdisciplinary team (IDT) approach with the core team consisting of the patient and family plus a physician (M.D.) and registered nurse (R.N.), both possessing expertise in pain and symptom management, and a social worker (L.C.S.W. or M.S.W.) proficient in bio-psychosocial care. This team approach encourages patients, family members, and professional caregivers to exchange knowledge and facilitates communication on treatment preferences. Typically, a nurse and social work team act in the capacity of care managers for the patient, remaining a constant in the patients life throughout his or her stay in the program. Collectively the IDT improves outcomes by proactively anticipating problems, seeking them out, and addressing them, rather than waiting for consequences to manifest. The core team is responsible for coordinating and managing care across all settings and providing assessment, evaluation, planning, care delivery, follow-up, monitoring, and continuous reassessment of care. Depending on the needs of the patient and family, additional team members may join the core team in service provision. These adjunct staff members provide care under the supervision of the core team. Adjunct team members include the following: Certified home health aides (CHHA) Spiritual counselors/chaplains Rehabilitative therapists (physical, occupational and speech therapist) Pharmacists Dietitians Bereavement counselors Volunteers Team Goals In the TCPC Program, the patient/family unit and the healthcare providers are equal partners. The patient and his or her family actively participate in developing and evaluating a plan of care, and attaining outcomes that reflect their personal wishes, values, and goals. Overall, team goals are to: focus on patient/family as the unit of care develop a plan of care consistent with patient and family goals provide appropriate management of the patients medical condition prevent crises coordinate and communicate among team members including primary and specialist physicians on a planned and regular basis discuss prognosis and reasonable expectations discuss basic pathophysiology of the disease and the effects of various measures being taken to improve health provide support and education to the patient and family, including teaching them about the expected course of disease, preventive care, medication use, and self-management and crisis intervention in the home teach the family how to successfully provide end-of-life care discuss advance care plans plan for home death, if possible provide 24/7 support and access to care In general, team goals are directed at delivering care that meets the patients personal preferences, treatment goals, and service needs. They also aim to help patients and their family members to anticipate and oftentimes avoid problems, thereby averting potential crises. Core Team Members: Roles and Responsibilities Brief descriptions of the roles and responsibilities of each core team member are presented below. In practice, each healthcare discipline develops standards of practice for which they are held accountable. The roles and responsibilities of adjunct team members are presented in the section on Patient and Family Services. Patients: As members of the IDT, patients are not passive recipients of healthcare services, but rather active directors of their own care. Who is to say what constitutes high quality end-of-life care? Increasingly, and despite contrary responses among some healthcare providers, experts agree that the most defensible answer to this question is, The patient, thats who. Not the patients doctor, nurse, or social worker. Not his or her family members or other caregivers. These individuals may, and in most cases, should provide guidance to help the patient understand his or her illness and prognosis and make informed decisions regarding care. But whenever possible, final decisions regarding care are best made by the patient. So what does constitute high quality end-of-life care from the patients perspective? In a 1999 study, researchers asked seriously ill patients what they wanted when it comes to coping with advanced illness and approaching the end of life. The answers they received ring with familiarity because they are what most of us would want: To have pain and other distressing symptoms controlled To achieve a sense of control To avoid burdening family members To avoid inappropriate prolongation of the dying process To strengthen relationships with loved ones (Singer, et. al, 1999). Abundantly patient-centered, the TCPC Program strives to meet these and other patient preferences for palliative and end-of-life care. A palliative care nurse solicits patient preferences during an initial, comprehensive in-home assessment. Findings from this assessment are used to develop a plan of care that is consistent with the patients treatment preferences and personal and spiritual values. As part of the plan of care, the patient is encouraged to designate a proxy who is empowered, through an advance directive, to make healthcare decisions in the event the patient is unable to do so. Regular re-assessments ensure that the plan of care continues to reflect the patients preferences as his or her circumstances change. Family Members: The term family members is used loosely here to refer to individuals close to the patient who provide careemotional, physical, financial, or otherwiseto the patient. It is well documented that family members, primarily spouses and adult children, provide the bulk of care to the frail elderly. A 1999 study reported in the New England Journal of Medicine confirms that they also provide the vast majority of assistance with nonmedical end-of-life care. The study showed that in 96% of cases the primary caregivers for terminally ill patients were family members. Most patients relied completely on family members and friends for assistance with such tasks as transportation, homemaking, nursing care, and personal care. Providing such care can be physically taxing, emotionally draining, and financially burdensome. It can also be unspeakably rewarding, both personally and spiritually. This aspect to care giving accounts for why most caregivers do it and why they wouldnt dream of not doing it. But they need assistance. All healthcare members of the IDT are responsible for helping family caregivers to help the patient. These informal service providers need training and education so that they can safely and effectively meet the medical and personal care needs of patients at home. They need counseling to help them cope with the demands of caregiving and with their own emotions and grief. They need practical assistance in obtaining and managing all the medical and nonmedical services the patient requires. At times they need an understanding look, a caring smile, and a shoulder to cry on. The TCPC Program requires each patient to have a primary care person who is available to provide care or, alternatively, if the patient can function independently at the time of admission, to ensure that an appropriate caregiver will be available to provide care should it become necessary. This caregiver, most often a family member, typically serves as the familys liaison to the patients healthcare providers. A palliative care nurse assesses the caregivers needs upon admission of the patient and conducts regular reassessments to ensure that the caregivers changing needs, as well as those of the patient, are being met. While the caregiver is an invaluable resource to the health team and the patient, he or she is not empowered to make decisions for the patient unless the patient is incompetent and the caregiver is the patients designated healthcare proxy. Physicians: In the TCPC Program, a palliative care physician and the patients primary physician jointly share responsibility for the patients care. In practice, the palliative physician typically undertakes most ongoing medical services while coordinating care from other providers, including the patients primary physician and specialists. This approach helps prevent the service fragmentation that otherwise often occurs in healthcare systems. Palliative care physicians are proficient in treating advanced illness and managing pain and other symptoms. As the physician representative on the IDT (primary physicians rarely attend the team conferences), the palliative care physician ensures that consensus about care is reached between specialists and other physicians involved in the patients care in consultation with the patient and family. Patient choice and informed decision-making are emphasized in the development of the care plan. Medicare and most other medical insurance plans pay for medically necessary care. The palliative care physician certifies that the patient needs the services provided and signs the plan of care. All changes in the plan of care and the patients condition are reported to the palliative care physician and documented in the patients clinical record. In turn, the palliative care physician communicates or collaborates with the patients primary physician on changes to the plan of care. Nurses: Palliative care nursing practice is conducted within an affiliative matrix. The palliative care nurse works with other members of the IDT to develop and implement the patients plan of care. He or she functions as a care manager coordinating the implementation of the care plan. The nurse also shares an advocacy role for patients and families with other members of the team. In developing and maintaining collaborative relationships with other members of the IDT, the nurse must be flexible in dealing with the inevitable role blending that takes place (Standards of Hospice Nursing Practice and Professional Performance, 1995). Skilled services are provided by or under the supervision of registered nurses following a medically approved plan of care developed by the IDT. Palliative care nurses are adept in the art and science of pain and symptom management and have well-developed physical assessment and evaluation skills. Other services include administration of medication and treatments, emotional support, and patient and family education and instruction. Each nurse care manager maintains contact with the patient and family and other healthcare providers across the continuum of care should the patient require services outside the home setting. The palliative care nurse collects patient and family data through assessment of the patients physical, emotional, spiritual, social, psychological, and cultural status. The nurse assesses the patients and familys coping strategies, support system, and learning needs in collaboration with other members of the team. The scope and intensity of reassessment is determined by ongoing and systematic evaluation of the patients needs and family condition. Real or potential problems to be addressed are derived from analysis of the multidimensional assessment data collected by the team and validated by the patient and family (Standards of Hospice Nursing Practice and Performance, 1995). Social Workers: Palliative care social workers provide counseling and spiritual care to help patients and their families address their economic, psychosocial, and emotional needs. Skilled in active listening, the social workers take their lead from their clients, assessing the patients and familys needs and preferences for care in an initial consultation and subsequent reassessments. They then develop a social work plan of care based on their assessment findings. Of the five domains that constitute quality end-of-life care according to patientsreceiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden on family members, and strengthening relationships with loved ones (Singer, et. al, 1999)palliative care social workers spend much of their time with patients addressing the last three. Their services can take many forms. Social workers help patients achieve a sense of control by discussing with them and their family members issues that both groups typically want to address but too often avoidissues such as death and dying, substitute decision making for life-sustaining treatment, and memorial planning. They help alleviate the burden on family members by assessing the patients and familys economic, psychosocial, and spiritual needs, and then helping to obtain resources to meet those needs. They might, for example, assist patients with applying for In-Home Supportive Services or Meals on Wheels, and help caregivers arrange for respite services. They also help strengthen relationships between patients and their loved ones through such services as individual and family counseling. They help patients and families find closure by discussing the patients achievements, assisting with life review, and, in some cases, by helping to create a memorial videotape of the patient for the surviving family members. A wide range of other social work services are available depending on the needs of patients and family members. The social worker works closely with and supports the work of other IDT members. Often, the social worker shares care management duties with the palliative care nurse. Like the other members of the core IDT, the social worker is a constant in the patients care, from admission on through the dying process. Interdisciplinary Team Conference The IDT depends on clear, open, and positive communications among team members to work effectively to meet patients needs and goals and to avoid unnecessary duplication of services. Regular team meetings help foster such communication. They also synthesize and augment individual expertise, leading to the collective development of a comprehensive, collaborative, and coordinated plan of care. All IDT members, including both core and adjunct members, meet to discuss ongoing care of patients at least once every two weeks. During each one- to two-hour conference, about 40-50 patients are presented and discussed. The palliative care physician leads the discussions. An IDT conference note is completed following each team meeting. Staffing Requirements The chart below presents the staff-to-patient ratios and full-time equivalents recommended for the major healthcare disciplines involved in the TCPC Program. DisciplineRatio (Staff to Patients)Full Time Equivalent (FTE) (Based on 30-patient census)Physician1:800.4Registered Nurse1:142.2Social Service1:251.2Certified Home Health Aide1:251.2Liaison/Intake Registered Nurse1: 1000.3Clinical Nurse Supervisor1:500.6Spiritual Counselor/Chaplain 1:125 0.2Program Director1:1000.3Clerk1:301.0 PATIENT ENROLLMENT Referrals to the Progam The TCPC Program uses varied approaches to encourage appropriate patient referrals to the program. For example, two liaison nurses for the TriCentral Service Area visit seriously ill patients and their families in the hospital, medical offices, and other settings to assess, evaluate, and discuss potential referral to the TCPC Program. Self-referrals from patients and families are accepted, as are referrals from physicians, nurse practitioners, discharge planners, social workers, and care managers. Program brochures (see the Appendix for a copy) also are available to patients, family members, and healthcare providers in waiting rooms throughout the hospital, clinics, and medical offices. Admission Criteria Generally patients meet all admission criteria listed below. Outlier patients may be reviewed for admission on an individual basis by the intake nurse and palliative care physician. Has a life threatening illnesstypically cancer, congestive heart failure (CHF), or chronic obstructive pulmonary disease (COPD)with an expected prognosis of 12 months or less. Is homebound, requiring a considerable and taxing effort to leave. Has a deteriorating medical condition and is at risk for needing symptom management. The patient may have had 1-2 Emergency Department or hospital admissions in the last year. Has a primary care person available to provide care, or to ensure that an appropriate caregiver is available to provide care when necessary. Agrees with the emphasis of care in the home setting with short-term inpatient care limited to: (a) symptom control not obtainable at home, or (b) care through the terminal event. More aggressive therapy, if appropriate, may be provided by the primary physician in another care setting. Does not meet hospice admission criteria for one or more of the following reasons: (a) Patient/family have difficulty accepting the life-threatening diagnosis and prognosis, (b) Patient/family are not agreeable to stopping aggressive therapy, and/or (c) The primary physician is uncertain if patient meets the hospice admission criteria. Scores 7 or less on the Palliative Performance Scale, which provides an assessment of the patients functional status while measuring the progressive decline in the persons health (see the Appendix for a copy). Palliative care patients may be receiving potentially curative therapy at the time of their admission. Cancer patients may be receiving active chemotherapy treatments. Patients with CHF or COPD may report limitation of function on most days, for example, being able to walk no more than one block or climb no more than a flight of stairs. Admission Process Admission to the TCPC Program follows a four-step process: A hospice/palliative care intake nurse (RN) conducts the initial screening of patients by telephone or in-person using the programs screening tool (presented in the Appendix). A palliative care nurse who is a member of the IDT completes the initial assessment of a new patient in the patients home. This assessment includes: Review of the palliative care program Obtaining informed consent for admission Identification of patient and family goals Initiation of a new medical record Medical history review Physical assessment Medication review Advance care planning with discussion of patient preferences regarding Do Not Resuscitate (DNR) orders Home safety assessment Ordering any durable medical equipment needed by the patient Assessment of the patient/familys education and training needs Introduction of the IDT process and the core team members Initiating involvement of any adjunct team members needed by the patient or family Ensuring that a binder with the patients medical records and plan of care is available in the patients home for ongoing use and reference by IDT members. Based on this assessment, the nurse, in conjunction with the IDT, develops a plan of care, which is reviewed, discussed, and revised as necessary within a week of the patients admission. The IDT informs all other physicians involved in the patients care (i.e., the primary physician and any specialists) of the patients admission to the TCPC Program. Admission Flowchart         Yes (      Accepted Accepted       Accepted    Admission CARE PLANNING The Plan of Care I have very definite ideas of what I would want done and what I wouldnt want done... Its very, very important to me now that I can make choices for myself. I want control, but it shouldnt be disruptive. It can be productive if its thoughtful and others are consulted. These statements are among the responses received by researchers Singer, Martin, and Kelner (1999) when they asked seriously ill patients about their views regarding end-of-life care. (Interview) participants were adamant, the researchers wrote in their study report, that they wanted to retain control of their end-of-life care decisions while they were capable of doing so, and that they wanted the proxy of their choice to retain control if they became incapable. In the TCPC Program, patients maintain a sense of control over their lives by expressing their preferences for palliative and end-of-life care in a written plan of care. Developed within a week of admission, the care plan marks the start of the patients palliative care journey. Updated at regular intervals thereafter, it provides guidance for the end of the journey as well. Continual use of the plan of care enhances communication among the patient, family, and healthcare providers, which in turn helps ensure quality of care. A palliative care nurse drafts the plan of care based on a comprehensive in-home assessment of the patient and family. This assessment helps patients establish personal goals and allows for assessment of patient and family support systems. It also fosters an exchange that can promote the development of a caring relationship between nurse and patient (Griffie, et. al, 1999). During the assessment, patients and their family members have an opportunity to both receive and provide important information. In discussions with the nurse, the patient and family learn about the goals and services of the TCPC Program, find out more about the patients illness and prognosis, receive education and instruction in managing the patients care at home, and obtain information about advance care directives and the process of designating a healthcare proxy. In those same discussions, the nurse learns more about the patient and his or her family: What are the patients preferences for treatment and care? What ancillary services are needed to support the family? Are there ongoing needs for education and instruction? The nurse also obtains information via a medical history review, a physical assessment, a home safety assessment, and a medication review. Taking into account all this information, the nurse, in conjunction with the IDT, drafts a plan of care, which is reviewed, discussed, and revised by all IDT members, including the patient and family. The care plan must include an assessment of the patients needs, treatment goals, designation of the primary caregiver in the home (or an alternate plan), and identification of scope and frequency of services. The palliative care physician must sign each plan to indicate approval. The care planning process does not end here, however. A dynamic process, it is ongoing and changes as the patients and familys needs change. At least every 60 days, and more often if necessary, the IDT reviews and updates the plan of care to ensure that it continues to reflect the patients personal preferences, treatment goals, and service needs. These revisions also document the provision of IDT interventions. Once approved by the IDT and signed by the palliative care physician, all services must be provided in accordance with the most current plan of care. An IDT nurse ensures that the new plan of care is filed, along with the patients medical records, in a binder that is left in the patients home, so that all IDT members have easy access to information they need. The Care Plan Checklist The IDT uses the checklist on the following page to ensure consistency and continuity of care as well as to document IDT interventions (see Appendix for a copy). Working together, the IDT completes all tasks on the checklist for each patient. The tasks are not intended to be accomplished all at one time. Rather, they should be carried out at times deemed appropriate to meet the patient and familys needs and service preferences. Many tasks will be completed during the first week of a patients admission. Others will be completed during subsequent home visits. But all should be completed during the course of the patients stay in the TCPC Program. END-OF-LIFE CARE Patient Name ____________________________________ Medical Record # _________________________ Please initial each subject to indicate you have addressed, reviewed, and implemented intervention during your home visit with the patient BASIC ASSESSMENT NEEDS _____ *Review and update Advance Directive and DNR _____ Review Hospice Philosophy _____Review 4 levels of care. Ascertain preferred place of death _____ Review call system/Triage. How to contact Hospice 24-hours day. Discuss use of 911 versus calls to Hospice _____ *Continue instructions in funeral planning and what to do when patient dies _____ Assess for immediate need for other visits, (i.e., MSW, Chaplain, CHHA, M.D.) _____ *Review signs and symptoms of death and dying _____ Discuss home safety _____Consider increased frequency of visits for each discipline _____ Communicate Plan of Care to team members including Triage as needed MEDICATIONS _____ Syringe for sublingual meds _____ Anticipate for congestion; consider Atropine/Levsin _____ Consider Tylenol supp. For fever _____ Instructed on sublingual/rectal administration of meds _____ Red sticker on Kaiser card for pharmacy _____ Discussed medication side effects EQUIPMENT NEEDS _____ Consider hospital bed, commode, over bed table, wheelchair _____ Anticipate needs for diapers, chux, syringes, toothettes, urinal, bedpan, etc. _____ Educated/evaluated the use of oxygen and safety precautions PSYCHOSOCIAL NEEDS _____ Assessed for coping mechanism _____ Addressed for possible unfinished issues with family/patient, financial/legal _____ Assessed for increase social worker intervention through visits, telephone calls _____ Assessed for cultural beliefs & values, beliefs about death and dying _____ Assessed for caregiver status ______Bereavement risk  PAIN MANAGEMENT _____ Assessed disease process and reviewed pain management _____Instructed patient/family route of medication (sub-lingual/rectal) - Syringe provided _____ Instructed regarding frequency of meds, adjusting dosage for patients comfort and what meds to use _____ Check for adequate supply of pain meds in the home CONSTIPATION _____ Instructed/reviewed bowel regimen _____ Checked patient for fecal impaction if indicated. _____ Ordered Ducolax supp, fleet enema as needed URINARY _____ Assessed when patient last voided retention _____ Anticipated for foley catheter need SKIN INTEGRITY _____ Instructed re: skin care, bed repositioning, changing diapers, safety, lotion to bony prominence _____ Oral hygiene care ANXIETY/PRE-TERMINAL AGITATION _____ Assessed patient for hallucination-educate family / caregiver as needed _____ Reviewed medication management, consider Xanax, if Xanax not effective, assess for Thorazine _____ Assessed for music therapy SPIRITUAL NEEDS _____ Addressed spiritual status/needs, may need to contact patients clergy or pastor as requested EDUCATIONAL NEEDS/MATERIALS _____ Provided patient education materials _____ Reviewed disease pathophysiology _____ Instructed patient/family on self management skills _____ Instructed patient/family about soft music, massage, aromatherapy, candles, pets, etc. ______________________________________ ______________________________________ _____________________________________ Signature/TitleInitial/DateSignature/TitleInitial/Date PATIENT AND FAMILY SERVICES Patient and family services include ongoing care provided by all members of the IDT, after-hours services, and inpatient care. Also available are medical supplies, durable medical equipment, oxygen, and medications. Ongoing Care: Core Services Physician Visits: The palliative care physician visits the patient at home within a week of admission, with follow-up visits every 4-8 weeks or as needed. The physician will make more frequent visits if medically necessary or if a patient evaluation is needed. Physician services include, but are not limited to: evaluation and management of the patients medical condition, including pain and other symptom control. The palliative care physician discusses with the patient advance care plans and treatment goals. He or she also ensures that consensus about care is reached between specialists and other physicians involved in the patients care. Nurse Visits to Home: Skilled nursing services are provided by or under the supervision of a registered nurse, in accordance with the patients plan of care. An IDT nurse visits the patient at home as often as required by the patient. Typically, this means 2-3 weekly visits during the first few weeks in order to establish a strong relationship with the patient and help him or her manage care at home. The nurse may visit less frequently thereafter, but never less frequently than every other week unless the patients condition stabilizes. The IDT must approve visits that are less frequent than every other week. More frequent visits may again be needed in the few weeks before death as patient and family needs for bio-psychosocial support increase. Skilled nursing services include, but are not limited to: patient assessment, evaluation and care management of the medical nursing needs of the patient, the performance of prescribed medical treatment of pain and symptom control, the provision of emotional support to both the patient and his or her family, and the instruction of caregivers in providing personal care to the patient. Skilled nursing services are available on a 24-hour on-call basis. Social Worker Visits to Home: Social workers provide counseling and emotional support to help patients and their families address their economic, psychosocial, and spiritual needs. An IDT social worker completes an initial assessment of the patient and family within one week of admission. Thereafter the social worker conducts either a telephone consultation or an in-home visit at least monthly and more often if necessary. Social work services include, but are not limited to: psychosocial assessment of the patient and family, counseling to help the patient and family cope with the stress of terminal illness, assistance in planning care, and coordination of community resources. Adjunct Services The following services are available as needed by the patient and family. The core team assesses need for adjunct services and arranges for and coordinates these services from the appropriate providers. Home Health Aide Services: Certified staff members provide personal care services to help patients maintain personal hygiene and remain comfortable at home. Their services also help secure a safe, healthy environment for patients. Services, including bathing, grooming, meal preparation, shopping, and other related activities, are provided under the direction and supervision of a registered nurse. Spiritual Services: Provided by a spiritual counselor or chaplain at the patients request, these services help patients and families sustain hope and cope with the changes taking place. The counselor or chaplain helps the patient and family integrate the dying experience into their lives, find meaning and purpose in what remains of life, and further their appreciation of spiritual values or sacred values associated with their belief system. This service is available to all patients and families regardless of their spiritual or religious affiliation. The spiritual counselor or chaplain also is available for bereavement counseling and to conduct funerals or memorial services. Rehabilitation Services: These services include physical therapy, occupational therapy, and speech therapy. Services are provided for symptom control and to enable the patient to maintain activities of daily living and basic functional skills that promote physical and psychosocial independence. These services are also aimed at improving restorative function, home safety, and the patients transfer skills. Pharmacist Consultations: Patients often have co-morbid conditions that require multiple medications. Kaiser pharmacists serve as experts to the IDT, offering guidance for managing complex medication regimes so that adverse medication events are avoided and pain and other symptom control is achieved. Less frequently, pharmacists will consult directly with patients as needed to help them manage their medications. Nutrition/Dietitian Services: Many patients experience symptoms and medication and treatment side effects that negatively affect their nutritional status. A dietitian is available to provide expert consultation to the IDT so that team members can educate the patient and family about innovative yet practical dietary interventions that enhance comfort and nutritional satisfaction. Less commonly, the dietitian provides these same services directly to the patient and family. Bereavement Services: Bereavement counselors offer these services to the surviving family members for a period of at least one year after the death of the patient. Typically the bereavement counselor is the same IDT social worker who was originally assigned to the patient and family so that continuity of care is maintained. Services include an assessment of the familys needs and development of a care plan to meet those needs, both prior to and following the death of the patient. Other services available are bereavement support meetings, individual counseling, follow-up telephone calls, empathy cards, and newsletters. Information and referrals to appropriate community resources are also offered. Volunteer Services: Program volunteers, working under the supervision of TCPC staff, provide support and companionship to patients and their families. They also provide respite care, staying with the patient so that caregivers can have time off. Following the patients death, volunteers offer bereavement support to the surviving family members. All volunteers receive training from TCPC staff prior to providing services. After-Hours Services As advanced illness is not time bound, telephone support via a toll free number and after-hours home visits are available 24 hours a day, seven days a week as needed by the patient and his or her family. Palliative care registered nurses manage these after-hours services, providing guidance based on established treatment guidelines, obtaining physician orders, arranging for prescription medications, and providing other services as needed based on a telephone assessment of the patient and family. Palliative care physicians are also available 24/7 to support patients and their families as well as the after-hours staff. All after-hours telephone interactions with patients and families are documented and placed in the patients medical record. The nurses relay information from these calls to the IDT and follow-up with patients and the family as needed Inpatient Care Inpatient services are provided, when necessary, to ensure both appropriateness of care and continuity of care for patients who cannot be managed at home because of acute complications or because their family cannot manage terminal care for them at home. Inpatient care is provided at the least-acute level that can provide necessary treatment in accordance with the patients plan of care. If possible, inpatient care is delivered in a non-acute setting such as a skilled nursing facility or a hospice-like inpatient unit. Following a necessary acute care admission, the patient is transferred to a non-acute setting as soon as possible when consistent with the patients preference and treatment goals. Inpatient terminal care is available as needed, generally for ten days or less, if possible. Additional Services Medical supplies, durable medical equipment (DME), oxygen, and medications are all available to patients as needed, 24 hours a day, seven days a week. Medical supplies, DME, and oxygen are provided based on the patients Health Plan benefit. Prescriptions are provided under the patients Health Plan prescription drug benefit. PATIENT DISCHARGE Patients are discharged from the TCPC Program when any one or more of the following events occur: The patient converts to the hospice benefit. The patient/family no longer meet the palliative care admission criteria or do not agree with palliative care goals. The patients condition stabilizes or symptoms are under control with minimal risk of decline. The staff discusses possible discharge from the program in advance with the patient and family. Appropriate documentation is completed in the patients chart including relevant actions and decisions leading to the patients discharge from the program. Discharge plans delineate how services will be provided after the patient departs the TCPC Program. If a patient terminates the program and subsequently re-enrolls, the patients assessment and care plan will be updated or completed anew, as recommended by the TCPC physician.  CHAPTER 5 QUALITY MANAGEMENT PLAN To survive in todays resource restricted healthcare environment, new service programs need a comprehensive quality management plan to document and demonstrate the worth of the program to both patients and the organizations bottom line. Chances are that your new palliative care program will be housed within a department that already has such a plan in place. In this case, you need only review the plan, checking to see that all its parts apply, and, if necessary, customize it for your program. In this chapter, we describe the components of a comprehensive quality management plan that are especially important to ensuring quality of care in palliative care programs. In the Appendix, we present the quality management plan used in the TriCentral Palliative Care (TCPC) Program as well as Kaiser Permanentes Home Health Quality Management Program Description. Feel free to use these plan descriptions as starting points for developing your own. PURPOSE AND FUNCTIONS OF THE PLAN Comprehensive quality management plans for palliative care programs are designed to achieve several purposes: Assure the quality of the care provided Improve palliative care services Ensure coordination and continuity of care across providers and disciplines Provide a means for assessing and resolving negative outcomes and events At its best, the quality management program increases the probability of positive patient outcomes and decreases the likelihood of adverse events by continually assessing and improving governance, managerial, clinical, and support mechanisms that directly and indirectly impact outcomes (Kaiser Permanente, 2002). The program addresses the interests of several groups of stakeholders: healthcare administrators, healthcare regulatory agencies, program staff members, and, of course, patients and their families. The program serves two main functions: Quality assessment and performance improvement. QUALITY ASSESSMENT Quality Indicators Quality assessment activities include the development of data sources and the analysis of information generated from these sources to identify and resolve problems as well as identify opportunities for improving care. Quality indicators are the measures that are collected and analyzed to assess performance and outcomes. We have listed at the end of this chapter all of the quality indicators used in Kaiser Permanentes Home Health Quality Management Program. While all of these indicators should and do reflect the broad goals of the TCPC Program (see Chapter 4), a fewthose highlighted below are especially sensitive to the programs unique focus on providing pain management and other comfort care in the patients home and in accordance with the patients wishes. Patient Satisfaction: Two to three weeks after admission, patients or their family representatives are asked to complete a one-page satisfaction survey that evaluates quality of care and identifies areas for improvement (see Appendix for a copy). Results are tabulated and trends are analyzed quarterly. A quality staff member may contact patients or families regarding specific issues or concerns, if a name and contact person is provided on the survey. Aggregate results of the surveys and identified trends are presented quarterly to the agency quality committee. If the aggregate result falls below 4.5 (1-5 scale), a second level of analysis is done and an action planned developed. Pain Management: Pain management is evaluated by: 1) monitoring the frequency with which pain is assessed and documented in the patients chart, and 2) monitoring whether interventions and follow-up are implemented in accordance with pain standards established by the TriCentral Home Care Department (see Appendix). Random monthly audits of patient medical records are conducted to collect the data. Department goals are that pain ratings will be obtained and documented on at least 90% of all patient visits and at least 90% of all actions taken in response to pain ratings will meet the criteria defined in the pain standards. Symptom Management: Overall management of symptoms is evaluated by monitoring the number of: Emergency response calls (911) by patients or their families Acute-care hospital admissions Emergency department visits After-hours telephone calls to triage and on-call staff The palliative care team discusses results at their weekly conferences to identify the reasons for use of the above services, identify missed opportunities, improve communication and appropriate service utilization, and avoid unnecessary emergency admissions. Advance Care Planning: The presence of an advance care plan for each patient is audited monthly as part of a random sample chart review. The review is comprehensive for key quality of care and compliance issues. Utilization Review: Service utilization is conducted through review of individual plans of care in team conference and through multidisciplinary peer reviews of medical records. Biweekly team conferences provide a venue for team members to evaluate care plans for individual patients and make changes as needed based on input from the patient, family, or team members. The plan of care is a fluid document that is adapted as needed to meet patient needs, with services increased, decreased, added, or deleted based on the principle of the right care at the right time. Data Collection and Analysis Once quality indicators are established, data must be collected to assess performance with respect to each indicator. Because information gathering is so vital to quality assessment and performance improvement, the quality management plan should describe procedures for data collection and organization. This means identifying data sources, frequency of data collection, sample sizes, persons responsible for collecting data, report frequency, and to whom the information is reported. The plan also should present detailed procedures for data analysis. The palliative care team should regularly review the data analyses to identify and resolve problems and to determine whether a more intensive analysis is required. Intensive analyses could be in response to important single events; levels of performance or trends that vary significantly and undesirably from those expected; performance that varies significantly and undesirably from that of other organizations or recognized standards; and when a significant or sentinel event occurs (Kaiser Permanente, 2002). For example, intensive analyses may be conducted on all confirmed transfusion reactions, significant adverse drug reactions, and significant medication errors. PERFORMANCE IMPROVEMENT The overall goal of quality management is performance improvement. If quality indicators show that a problem exists, then an action plan should be implemented to resolve the problem or improve care. For greatest effect, performance improvement activities should be data-driven and evidence-based. They should also involve all appropriate disciplines and departments. Typically, the action plan is designed to either improve an existing process or create a new one that will enhance care. Once the action plan is implemented, data should be collected to determine whether the intervention was successful, met reasonable needs and expectations of patients and their families, and was sustained over time. Aside from being a response to quality assessment findings, performance improvement activities may also be selected and designed based on the following considerations (Kaiser, 2002): The organizations mission, vision, goal, and strategic priorities Current sources of information (i.e., standards of practice from professional and governmental organizations, clinical pathways, current literature) The performance and outcomes of the processes of other organizations Important data sources for performance improvement include utilization data, quality indicators, the OASIS minimum data set for home health patients, and the performance measurement (ORYX) indicators established by the Joint Commission on Accreditation of Healthcare Organizations. Improvement Strategies: Plan Do Check Act The Home Health Department at KP uses a research method known as the Plan-Do-Check-Act (PDCA) cycle to implement interventions aimed at improving care processes and performance. Below, excerpted from KPs Home Health Quality Management Program Description (2002), are key activities of the PDCA cycle for performance improvement. Plan Phase: Plan the change. In the Plan phase the process to be improved is defined, stakeholders and their needs are identified and assessed, and the goal of the improvement effort is defined. With the use of performance improvement tools, contributing factors to performance are identified, measures and operational definitions are developed, and baseline measures are taken. Based on findings, an action plan is developed to decrease the difference between customer needs and the current process performance. Do Phase: Carry out the change preferably on a small scale. In the Do phase, the change is carried out and implemented as a pilot study. This is important so that problems can be identified, removed, and refinements made prior to large-scale rollout of the change in the Act phase. Baseline performance measures are taken during this phase and results summarized. Check Phase: Study the effects of the change or pilot study. Here the baseline findings from the new process (Do phase) are evaluated. Impact on stakeholders and related functions (e.g., processes and departments) are analyzed. The types and causes of poor performance are identified along with solutions to fine-tune the change initiative and performance improvement program. Act Phase: Act on what was learned and implement refinements on a large scale. In this phase, implement modifications to the performance improvement work plan based on the findings from the Check phase. Plan and schedule ongoing measurements to monitor progress of the change. Ongoing monitoring should result in activities to narrow the gap between customer/stakeholder needs and the performance of the process(es). To continuously improve, it will be necessary to begin again with the Plan phase above. DIVISIONAL AND REGIONAL INDICATORS AND INDICATOR WORKSHEETS Domains of QualityHome Health Quality management IndicatorsREG OR DIV Frequency of Data Collection & ReportingReported Locally or Aggregated Centrally SatisfactionHome Health Patient Satisfaction SurveyREGQuarterlyCentralPatient SatisfactionREGQuarterly Local Provider SatisfactionREGAnnualLocalStaff SatisfactionREGAnnualLocalComplaints TrackingDIVQuarterly CentralClinical QualityPatient Clinical Record Review Minimum content defined in Medical Record/Utilization Management Monitoring ToolDIVReview Process QuarterlyLocalOASIS Adverse Event MonitoringDIVQuarterlyLocalPain Management DIVMonthlyCentralInfection ControlRate of Infections REGQuarterlyLocalRisk ManagementUnusual Occurrence Reporting Significant Adverse Drug Reactions Significant Medication Errors OASIS Adverse Event MonitoringDIVQuarterlyLocalComplianceFrequency and Duration OrdersDIVMonthlyCentralInterdisciplinary CommunicationDIVMonthlyCentralMedical Record/Utilization Management Monitoring ToolDIVSemi-AnnuallyLocalContract ServicesService Agreement Providers Supplemental Staff ProvidersDIVAnnualLocalComplaints MonitoringDIVQuarterlyCentralOASIS Database QualityOASIS Primary Diagnosis AppropriateDIVSemi-annualLocalOASIS ICD-9-Coding Accurate for Primary DiagnosisDIVSemi-annualLocalOASIS Data Entry Accuracy (when manually entering data)DIVSemi-annualLocalDocumentation supports OASIS assessmentDIVMonthlyCentralOASIS RN completes initial assessment when another discipline ordered at referral DIVSemi-annualLocalIndependent Audit of Primary Diagnosis and Coding AccuracyDIVAnnualCentralRe-certification visit completed between day 56 and 60 for OASIS assessmentDIVSemi-annualLocalUtilization ManagementService Utilization Appropriate DIVQuarterlyLocal CHAPTER 6 FINANCING AND REIMBURSEMENT Pioneer healthcare programs are difficult to finance because traditional reimbursement streams typically will not pay for their services until these new programs become almost old programs that have proliferated and proven their effectiveness time and again. Such is the case with almost all palliative care programs at this stage of their development: There currently is no explicit third-party reimbursement for these services, whatever form they may take. No single magic bullet approach to financing palliative care has been identified, concludes a technical assistance monograph prepared by the National Hospice and Palliative Care Organization in conjunction with the Center to Advance Palliative Care (2001). Consequently, the financing of palliative care is and will remain one of the biggest challenges for hospital administrators (NHPCO/CAPC, 2001). How is it then that, despite this financial Catch-22, palliative care programs have grown in number and importance in recent years? Perhaps the most pointed answer is found in the adage, Where theres a will, theres a way. In hospitals, hospices, nursing homes, and home health agencies, determined champions of palliative care have launched their programs using a patchwork of funding from multiple sources, including existing reimbursement streamsfor hospice care, home care, physicians services, etc.as well as foundation grants, clinical research initiatives, medical fellowships, and institutional subsidies. Funding challenges and opportunities vary depending on the structure and setting of the palliative care program. For instance, the financing plan for a hospital-based program focused on research and education will look different from that for a community hospice organization concerned with expanding direct services. This chapter examines funding for and regulatory issues pertaining to palliative care programs modeled after the TriCentral Palliative Care (TCPC) Program; that is, programs based in dually certified hospice and home health agencies that provide direct patient and family services. Within this context, we look at palliative care services offered through capitated managed care organizations (MCOs), such as Kaiser Permanente, which houses the TCPC Program, and through community-based home health agencies. As always in the shape-shifting world of healthcare, readers should be aware that the rules and regulations governing hospice and home health agencies are constantly changing, so administrators and practitioners need to keep abreast of new developments and be proactive in defining strategies for their organizations to avoid problems (Adeniran, 2002:111). CAPITATED MANAGED CARE ORGANIZATIONS Healthcare policy analysts have pointed to capitated managed care organizations (MCOs) or HMOs as excellent proving grounds for palliative care programs because of their payment structure and emphasis on coordinated care. As capitated systems, MCOs have the financial and organizational flexibility to integrate all elements of healthcarefrom physicians to financinginto a coherent whole. As Lynn et al. note, Advantages derived from managed care systems providing quality end-of-life care include coordinated care across delivery sites, interdisciplinary teams, integrated services, and opportunities to develop innovative care programs (1998:322). In addition, MCOs provide a supportive environment for chronically ill patients, where care is coordinated from a proactive standpoint, anticipating problems, seeking them out, and addressing them before complications arise. Currently, about 6.5 million Medicare beneficiaries, or 16%, have enrolled in Medicare MCOs, typically under the Medicare+Choice program. For all their advantages, MCOs must also wrestle with internal barriers to providing quality end-of-life and palliative care. Of paramount concern is the financial incentive inherent in capitated health plans to limit treatment and services. While this can work to the advantage of palliative care patients through an emphasis on quality over quantity by reducing medically inappropriate procedures, it can also be seen as a threat to quality by restricting access to necessary procedures (Lynn et. al, 1998). Clinicians must be ethically vigilant in seeking ways to balance the patients wishes and interests with appropriate allocation of scarce resources. TCPC PROGRAM FINANCING Our experience with the TCPC Program shows that it is both clinically responsible and economically feasible for MCOs to offer seriously ill patients a blended model of care that introduces palliative measures into curative practices. The TCPC program is one of a small minority of palliative care programs in the nation that enjoys a predictable income stream because its annual budget, about $900,000, comes from the monthly fixed reimbursements that Kaiser Permanente (our parent institution) receives for each of its enrollees. In southern California, almost all of Kaisers 296,000 members aged 65 and older, 10% of the total membership, are covered by Medicare+Choice. Under this program, Kaiser receives an inclusive, capitated rate under a managed care risk contract that covers hospital inpatient and outpatient services, including TCPC services. Until recently, HCFA did not adjust payment rates for severity of illness, thus creating a disincentive to enroll sicker patients with higher care costs. Beginning in 2000, however, risk adjustments were being phased in, starting with a 10% adjustment. That year, Kaisers Medicare+Choice reimbursement (with the 10% risk adjustment) averaged about $628 per member per month for a 65-year-old male with no adverse medical conditions and increased to about $661 per member per month for an 80-year-old male. By comparison, the monthly reimbursement for a single adult between the ages of 40 and 49 with no adverse medical conditions was $178, rising to $242 for a healthy single adult aged 60 to 64. With its six-year track record, the TCPC Program has demonstrated a high degree of fiscal stability, which it expects to maintain in the years ahead. A recent program evaluation that compared service utilization for TCPC patients to a control group of home health patients who received usual care found that cost offsets make the program economically feasible to sustain. When all service costsfor both inpatient and outpatient carewere considered, total average costs for TCPC patients were 45% lower than costs for the comparison group. Although TCPC patients had more home health visits, they had fewer emergency department visits, inpatient days, skilled nursing days, and physician office visits. Kaiser directly benefits from these TCPC cost offsets because its patients receive all their health services within this capitated system. Thus, Kaiser has a financial incentive to maintain the TCPC Program. Fiscal savings from the TCPC Program have not compromised quality of care. Our program evaluation also showed that satisfaction with services 60 days following enrollment was significantly higher among TCPC patients than a comparison group of home health patients who received usual care. Of the participants who died, 89% of the TCPC patients died at homethe expressed preference of most of these patientscompared to 57% of the control group, whose members were significantly more likely to die in the hospital. FINANCING FOR COMMUNITY-BASED HOME HEALTH AGENCIES The financial outlook for home-based palliative care programs that operate outside capitated MCOs is far less predictable due largely to the implementation in 2000 of a Medicare prospective payment system (PPS) for home health agencies that creates financial incentives for providers to limit lengths of stay and the number of home visits. Medicare covers the bulk of home health care provided in the U.S., so this sweeping payment reform has had an enormous impact on the home health industry. Overview of Medicare Home Health Services Eligibility: Medicares PPS changed the payment rules for home health agencies, but not other program features. Eligibility rules, for example, are unchanged. Medicare covers the cost of home health care for patients who: Are homebound; that is, for whom leaving home is such a major effort that trips outside are infrequent, for a short time only, or to seek medical care or attend religious services Are under the care of a doctor who establishes and approves a plan of care Require skilled nursing care, physical therapy, speech therapy, or occupational therapy Receive care from a home health agency approved by the Medicare program Covered Services: Covered services also are unchanged and include: Intermittent skilled nursing services, including direct skilled care, observation and assessment, teaching and training, and management and evaluation of a plan of care Intermittent home health aide services Physical and occupational therapy Speech language pathology services Durable medical equipment Medical social services Management and Evaluation of a Plan of Care: Traditionally, home health agencies have been reimbursed for the kind of complex care management that palliative care programs provide under the umbrella of management and evaluation of a care plan (M&E). This skilled nursing service, first approved by Medicare in 1989, is considered reasonable and necessary when underlying conditions or complications require that only a registered nurse can ensure that essential nonskilled care is achieving its purpose (Medicare Manual, Section 205.1 B2). Four components must exist for care to qualify for M&E coverage: the patient is at risk for hospitalization or exacerbation of a health problem if the plan is not implemented properly; the plan is complex and unskilled; the caregiver situation is unstable; and the skill of a registered nurse is needed to overcome the first three factors and ensure the plan is properly implemented (Homecare DIRECTION, 2000). Introduction of the PPS has not changed the fact that M&E is still a qualified Medicare home health service for which home-based palliative care programs can expect reimbursement. What has changed under PPS is that home health agencies can no longer bill by the visit. For this reason, M&E is a less viable option for the long-term management of patients with life-threatening chronic illnesses. How Prospective Payment Worksand Doesnt Work for Palliative Care Programs Under PPS, home health agencies are required to conduct a comprehensive assessment of each patient. Assessment results are used to assign the patient to one of 80 Home Health Resource Groups (HHRGs). The agency then receives a predetermined, fixed reimbursement based on the patients HHRG for each covered 60-day episode of care. Just as implementation of a hospital-based PPS led to patients being discharged quicker and sicker, the home health PPS creates a financial incentive for agencies to reduce lengths of stay and number of home visits. This in turn can lead to patient creaming, with HHAs limiting their services to healthier patients. The Center to Advance Palliative Care warns that this creates a serious problem for patients that need end of life care: those with substantial disability, complex illnesses, and unpredictable timing of serious need (2000). In fact, the system has some built-in flexibility to accommodate patients with greater than usual needs. Medicare, for example, pays HHAs a higher rate for those patients with greater needs. Patients also are reassessed during each episode of care, with payments adjusted if there is a significant change in a patients condition. Finally, agencies can receive additional outlier payments for a patient if the cost of care for that individual is significantly higher than the predetermined payment rate. In practice, however, this wiggle room affords a little, but not much leeway. It is impractical, for example, to build a palliative care program on outlier payments, which are meant to be an exception to the rule, not the norm. Management and evaluation of a care plan, one of the most applicable skilled nursing services for patients needing palliative care, may be deemed reasonable and necessary for about two months, but questionable after that. And many palliative care patients, though seriously ill, may not have greater healthcare needs than other home health patients, and so may not qualify an agency to receive higher payments. In the final analysis, home care providers of palliative care are challenged to receive reimbursement for end-stage, chronic illness care. Consequently, community-based palliative care programs must make the most of Medicare payments for home health services, while also taking advantage of other funding sources (e.g., foundation grants, charitable contributions, research initiatives, etc.) to sustain their programs. The Center to Advance Palliative Care ( HYPERLINK "http://www.capc.org" www.capc.org) recommends consulting available billing guides to determine what services can be billed and what codes to use, as well as working closely with local Medicare carrier medical directors to clarify billing issues and opportunities (NHPCO/CAPC, 2000). Another Alternative: Medicaid Waiver Programs Some HHAs offer palliative care through community-based Medicaid waiver programs that provide comprehensive, long-term home care for patients who are covered by Medicaid. These care-management programs offer a home-based alternative to older adults who otherwise would need nursing home care. A myriad of in-home health and supportive services are available, including skilled nursing care, home health aide services, rehabilitation therapy, respite care, transportation, and more. Not every state administers a Medicaid waiver program, and in the states that do, not every waiver program is designed to provide long-term home care. To find out if and how the program operates in your state, visit the Centers for Medicare and Medicaid Services State Waiver Programs and Demonstrations Web site at  HYPERLINK "http://www.cms.gov/medicaid/waivers/waivermap.asp" www.cms.gov/medicaid/waivers/waivermap.asp. . REFERENCES LITERATURE CITED Adeniran R. Fraud and abuse: An overview, Geriatric Nursing. 2002; 23:111-2. Cassell EJ. The nature of suffering and the goals of medicine. N Engl J Med. 1982;306:639-45. Center to Advance Palliative Care. Current Medicare financing for EOL and palliative care. June 2000. Available at:  HYPERLINK "http://www.capcmssm.org/content/44/index.html?topic=4" www.capcmssm.org/content/44/index.html?topic=4. Eaton, MK, Home health access dilemma: clinical integration and outcomes management. J Nursg Admin. 2002; 32 (1):9-11. Emanuel E and Emanuel L. The economics of dying. N Engl J Med. 1994;24:540-44. Emanual EJ, Fairclough DL, Slutsman J, Alpert H, Baldwin D, Emanuel LL. Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients. N Engl J Med. 1999;341:956-63. GAO (General Accounting Office). Publication GAO/T-HEHS-00-201. Available at:  HYPERLINK "http://www.gao.gov" www.gao.gov. Griffie J, Muchka S, Nelson-Marten P, OMara A. Integrating palliative care into daily practice: a nursing perspective. Journal of Palliative Medicine. 1999;2:65-73. Institute for Health Improvement:  HYPERLINK http://www.ihi.org/resources/qi/qitips/index.asp http://www.ihi.org/resources/qi/qitips/index.asp Kaiser Permanente. Home Health Quality Management Program Description. 2002. Last Acts. Developed by the Task force on Palliative Care, December, 1997. Sponsored by the Robert Wood Johnson Foundation, www.lastacts.org. Lynn J. Caring at the end of our lives. N Engl J Med. 1996;335:201-202 Lynn J, Wilkinson A, Cohn F, Jones SB. Capitated risk-bearing managed care systems could improve end-of-life care. J Amer Society on Aging, 1998;46:322-330. Meier DE and Morrison RS. (1999) Old age and care near the end of life. Generations,1999:23(1):6-11. NHO (National Hospice Organization). Personal communication by telephone. Dec. 2000. National Hospice and Palliative Care Organization/Center to Advance Palliative Care (2001). Hospital-hospice partnerships in palliative care: Creating a continuum of services. Available at:  HYPERLINK "http://www.nhpco.org" www.nhpco.org. Nuland SB. How We Die. New York: Vintage Books, 1995. Scitovsky A. The high cost of dying revisited. Milbrand. 1994. Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients perspectives. JAMA. 1999;281:163-8. Standards of Hospice Nursing Practice and Professional Performance. Hospice Nurses Association: Pittsburgh, PA, 1995. The Center to Improve Care for the Dying. Medicaring projects update-January 2000. Available at:  HYPERLINK "http://www.medicaring.org" www.medicaring.org. PAGE 14  PAGE 43 H O S P I C E Curative / Restorative Therapy Presentation/ Illness Death Diagnosis Acute Chronic Life Threatening Curative/Restorative Therapy Palliative Therapy Presentation/Diagnosis Illness Death Acute Chronic Life Threatening Referral MD, Hospice/Palliative Liaison RN, DC Planners, Disease Case Managers, self- referred, Etc. 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