THE TRICENTRAL PALLIATIVE CARE PROGRAM TOOLKIT

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 Healthca

A BOUT T HE A UTHORS

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 Healso was principal investigator for a prior project that evaluated the effectiveness of the TCPC Program In 2001, he and his colleague and Toolkit co-author, Kristine Hillary, were co-awarded a Faculty Scholarship by the Soros Foundation’s Project on Death in America for work in palliative care

Kristine Hillary, M.S.N., R.N.P.

Kristine Hillary is the Director of Home Health and Hospice for Kaiser Permanente, TriCentral Service Area in Downey, California Ms Hillary graduated in 1971 from Lutheran Deaconess Hospital School of Nursing in Minneapolis, Minnesota She holds

a BSN and MSN from California State University at Los Angeles and returned to CSULA in 2000 for post-master’s certification as a nurse practitioner The beginning ofher 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

T ABLE OF C ONTENTS

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 TriCentral’s 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

A CKNOWLEDGEMENTS

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

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

I NTRODUCING T HE

T RI C ENTRAL P ALLIATIVE C ARE P ROGRAM

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 days—only a few generations ago—when Grandma lingered in the back bedroom under the watchful care of the family doctor and took her final departure surrounded by family members and close friends Although most Americans still prefer to die at home, about 75% of deaths occur in hospitals and nursing homes (Lynn, 1996) Indeed, most terminally ill Americans experience what has been called an “Invisible Death” (Nuland, 1995) Sequestered in healthcare institutions, they spend their last days—sometimes their last weeks and months—isolated from family and friends, under the care of medical

strangers who have had little or no instruction in the “art of dying.” For many of the

dying, quality of life is sacrificed as they undergo “heroic” treatments that too often are medically futile and inappropriate, not to mention expensive An estimated 10% to 12% of our nation’s total health care costs each year are spent on end-of-life care (Scitovsky, 1994; Emanuel & Emanuel, 1994) “There is abundant evidence,” write physicians Meier and Morrison, “that the quality of life during the dying process is often poor, characterized by inadequately treated physical distress, fragmented care systems, poor to absent communication between doctors and patients and families, and enormous strains on family caregiver and support systems (1999:6).” These outcomes are in large part a result of our recent healthcare revolution, which has given rise to high-tech treatments that can extend life but also prolong dying, leaving some desperatesouls to wonder “When is enough enough?”

The opposite movement has not been political in nature but rather represents a shift in patient use of hospice care Medicare introduced the hospice program in 1983 as an optional benefit for achieving a “good death” that substitutes “high-touch” for high tech Widely recognized as effective in improving quality of life for terminally ill patients, hospice programs provide a range of services to control pain and provide comfort care, primarily to individuals in their own homes In the past decade, the number of Medicare patients receiving hospice care has more than doubled Today, about 20 percent of patients who die in the United States receive hospice care But average lengths of stay in hospice have been dropping, from 64 days in 1992 to 48 days

in 1999 (NHO, 2000) Twenty-eight percent of Medicare patients in the hospice

program receive hospice care for one week or less (GAO 2000) One reason for this shift in hospice use is patient unwillingness to forego curative care—and to abandon hope despite a poor prognosis The Medicare hospice program pays for medical

procedures necessary for pain control and other symptom management, but not those aimed at curing the patient As a result, many seriously ill patients resist the program because “it shuns treatment and is a strong marker for imminent death (The Center to Improve Care of the Dying, 2000).” Healthcare officials speculate that with the

development of new treatment options for life-threatening conditions, terminally ill patients are waiting to enroll in hospice programs until after they have exhausted all other alternatives (GAO, 2000) As one healthcare observer put it, “They are simply unwilling to promise to die on schedule.”

This see-sawing between medically inappropriate care and too little care has prompted calls for change and for blended models of care that view “relief of suffering and cure

of disease…as twin obligations of a medical profession that is truly dedicated to patientcare (Cassell, 1982).” One such blended model—and the basis for this toolkit—is Kaiser Permanente’s TriCentral Palliative Care Program

K AISER P ERMANENTE A ND

Kaiser Permanente (KP), the nation’s largest not-for-profit health plan, is an integrated health delivery system that organizes and provides or coordinates members’ care, including preventive care, hospital and medical services, and pharmacy services Among the various managed care models, KP is considered a traditional group model HMO in that it is a not-for-profit healthcare system with its own staff and facilities, and with active involvement of physicians in the decision-making process that affects patient care

KP’s mission is to provide affordable, high-quality healthcare services to improve the health of its members and the communities it serves KP serves 8.2 million members innine states—California, Colorado, Georgia, Hawaii, Maryland, Ohio, Oregon, Virginia, Washington—and the District of Columbia

KP serves the TriCentral area in Southern California through its medical centers in three communities: Bellflower, Baldwin Park, and Harbor City KP TriCentral serves

an estimated 630,000 members who reside in the area; its palliative care and hospice programs are available to an additional 300,000 members who reside in neighboring communities

TriCentral’s Palliative Care (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 life care and helping seriously ill patients find peace and dignity between the extremes

end-of-of too little care and too much The program was initiated as an alternative to KP’s hospice program, which like other hospice programs across the country, was being underused At TriCentral, average survival time for hospice patients was 48 days from the time of enrollment Twenty-six percent of these patients died within the first seven days of admission to the program; another 35 percent died in the remainder of the first month Many KP patients eligible for hospice care either refused services or were never referred to the program for a variety of reasons, including physician uncertainty

in determining life expectancy, patient unwillingness to forego curative care (and hope),and other negative connotations of the word “hospice.” As a result, patients often died

in acute-care hospital beds or intensive care units, sometimes following bouts of

medically futile care In 1996 at TriCentral, 63% of the patients who died in the

intensive care unit and 54% of those who died in acute medical beds had a primary or secondary diagnosis of one of three commonly fatal, incurable conditions: cancer, congestive heart failure (CHF), or chronic obstructive pulmonary disease (COPD) Frustrated and disturbed by these trends, we established the Palliative Care (PC)

program, an outpatient service housed in our Home Health Department that offers

improved care to dying patients and their families Modeled after KP’s hospice program

in that it offers superb pain management and other comfort care in the patient’s home, the PC Program features three important modifications, all of them intended to promotetimely 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 patient’s medical, social, and spiritual needs are being met

• telephone support via a toll-free number and after-hours home visits available 24 hours a day, seven days a week as needed by the patient

• advanced care planning that empowers patients and their families to make informeddecisions 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 costs—for both inpatient and outpatient care—were 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 It’s also a

question of personal values: Are the individual’s preferences for care and treatment at the end of life being met? Here, as well, the TCPC Program has been successful Whileimproving 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 program’s inception Today, the program’s average daily census is more than 80-90 patients

As our program’s reputation has grown, so too has interest in replicating it at other healthcare sites Increasingly, we’re 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 organization’s structure and meet the needs of patients in the local community

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 Program’s availability and special features

CHAPTER 2

U NDERSTANDING P ALLIATIVE C ARE

AND THE T RI C ENTRAL PC P ROGRAM

Palliative care programs are relatively new additions to the range of services available

in our nation’s 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 howthat 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 thedifferences between traditional models of care and the integrated model used by the TCPC Program

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 tocloak 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 patient’s 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 hospice’s 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

TCPC’s 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 Program’s 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

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, andstill others, like ours, are outpatient programs that target the homebound Patient eligibility, staffing patterns, the types of services offered—all these program aspects arevariables 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 aparticular way to achieve certain outcomes—among 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 program’s 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 team’s 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 patientand 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 patient’s or family’s 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

The TCPC Program is modeled after Kaiser Permanente’s 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 patient’s and family’s preferences and values Both treat the whole patient, taking into consideration the person’s 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 Permanente’s hospice program is designed tomeet 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, asthey 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

HOSPICE PALLIATIVE CARE

HOSPICE ADMISSION CRITERIA

The Patient:

1 Is a member of the Kaiser Permanente Health Care

Program.

2 Has a life threatening illness with an expected prognosis of

six months or less.

3 Is not receiving potentially curative therapy.

4 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.

5 Has a primary care person available to provide care, or to

ensure that an appropriate caregiver is available to provide

care when necessary.

6 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.

7 Completes Hospice consents

PALLIATIVE CARE ADMISSION CRITERIA The Patient:

1 Is a member of the Kaiser Permanente Health Care Program.

2 Has a life threatening illness with an expected prognosis of 12 months.

3 Is homebound, requiring a considerable and taxing effort to leave.

4 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.

5 Has a primary care person available to provide care, or to ensure that

an appropriate caregiver is available to provide care when necessary.

6 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.

7 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.

8 Completes Home Health Department consents.

HOSPICE PALLIATIVE CARE

HOSPICE PROVISION OF CARE AND TREATMENT OPTIONS

1 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.

2 The Hospice Physician is responsible for the patient’s care.

The patient may choose to see the primary physician for

care but treatments should be coordinated.

3 Supportive care is emphasized More comprehensive

therapy may be provided but not encouraged such as:

IV’s, TPN, NGT, transfusions, palliative chemotherapy

4 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

5 Bereavement support is provided to surviving family unit.

6 24-hour after hours telephone support is provided.

7 Durable Medical Equipment and Oxygen is provided under

the Hospice benefit.

8 Hospice Drug benefit is provided including prescription

and over-the-counter medications required for symptom

2 The Palliative Care Physician and Primary Physician are jointly responsible for the patient’s care Treatments should be coordinated.

3 Supportive care is emphasized More aggressive therapy may

be provided by the primary physician

4 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.

5 Bereavement support is provided to surviving family unit.

6 24-hour after hours telephone support is provided.

7 Durable Medical Equipment and Oxygen is provided based on the patient’s Health Plan benefit.

8 Prescriptions are provided under the patient’s Health Plan prescription drug benefit.

HOSPICE DISCHARGE CRITERIA

1 Patient/Family seek curative therapy.

2 Patient elects to receive Skilled Nursing Benefit for qualifying

illness.

3 The Hospice Physician is unable to certify that the patient has a

terminal diagnosis with a six-month prognosis.

4 The patient moves outside the Hospice catchment area Patient

may be referred to another Hospice Program if available

5 The Patient/Family do not agree with Hospice admission

criteria.

PALLIATIVE CARE DISCHARGE CRITERIA

1 Patient converts to the Hospice benefit.

2 Patient/Family do not agree with the Palliative Care admission criteria.

3 Patient condition stabilizes or symptoms are under control with minimal risk of decline

I NTEGRATION O F T HE TCPC P ROGRAM W ITH

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 setapart 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 patient’s illness, as depicted in Figure 1 Palliative care is seldomly provided during this period Not until the very last phase of life, whenthe patient’s 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 oftheir 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, whatmany 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

Curative / Restorative Therapy

H O S P I C E Presentation/ Illness Death

Diagnosis

Acute Chronic Life

Threatening

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 fromthe time of diagnosis Often, only limited palliative services are offered during the acute phase of a patient’s illness, when most of the focus is on curative or restorative treatment If the patient’s disease progresses, however, more palliative services are integrated into the patient’s 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

TCPC’s 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 wanted—pain and other symptom relief, emotional support, 24-hour medical support, and patient and family education—which enabled them to better manage their own care at home and reduced the need for inpatient and emergencyservices The study compared 210 patients in the TCPC Program with a matched

Presentation/Diagnosis Illness Death

Acute Chronic Life Threatening

Curative/Restorative Therapy

Palliative Therapy

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

B UILDING

A P ALLIATIVE C ARE P ROGRAM

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 anessential 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 program’s 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

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 nation’s teaching hospitals now offer palliative care

clinical and educational programs—all 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: Wouldn’t 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

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 caredelivery 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 project’s success Their experience also suggests that having more than one champion is important because a program’s 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 team’s

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

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 blueprintprovides 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 program’s basic structure: its mission,goals, and core components Next describe your program’s organizational structure, its staffing needs, and staff roles and responsibilities Think next of the program’s

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 program’s basic structure, including its mission, goals, and core components In the following two chapters, we present detailed procedures for the TCPC Program—from staffing to program evaluation Feel free to use or adapt these policies and procedures for your program

I DENTIFY B ARRIERS T O I MPLEMENTATION—

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 ofessential elements for change can help the team brainstorm possible solutions The listsare a good starting point for a planning session that will be most effective if it also takesinto account the organization’s unique characteristics (Institute for Health

Improvement)

Common Barriers

 Studying the problem too long without acting

 Trying to get everyone’s 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

C RAFT A B USINESS P LAN

To “sell” your program idea to administrators and financial officers, you will need a business plan, which outlines the new program’s 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 program’s 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 management—topics addressed in chapters 5 and 6 of this toolkit—should 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 plan—the executive summary

—after you have written all other parts While a complete business plan may run 30-40pages, 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 toentice 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

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, thecore components of the program (presented in Chapter 2) should remain intact in order

to achieve the same positive outcomes

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 patient’s 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)

• 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 patient’s medical condition

• prevent crises

• coordinate and communicate among team members including primary and specialistphysicians 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 patient’s 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 somehealthcare providers, experts agree that the most defensible answer to this question is,

“The patient, that’s who.” Not the patient’s 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 patient’s perspective? In

a 1999 study, researchers asked seriously ill patients what they wanted when it comes tocoping 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 patient’s

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 patient’s 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 care—emotional, physical, financial, or otherwise—to 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