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THE TRICENTRAL
PALLIATIVE CARE PROGRAM
TOOLKIT
Richard D. Brumley, M.D.
Kristine Hillary, M.S.N., R.N.P.
Copyright © 2002 by Brumley/Hillary. 1st edition. Copyright under the Uniform Copyright
Convention. All rights reserved. No part of this toolkit may be reproduced, stored in a retrieval
system, or transmitted in any form or by any means, electronic, mechanical, photocopying,
recording or otherwise, without written permission from the publishers.
ABOUT THE AUTHORS
Richard D. Brumley, M.D.
Dr. Richard Brumley, M.D., is the Medical Director of Kaiser Permanente Hospice and
Home Health Department for the TriCentral Service Area in Downey, California. He is
residency trained in Family Medicine and is board-certified in Hospice and Palliative
Medicine. As an Associate Clinical Professor at the University of California, Irvine,
School of Medicine, he has instructed Family Practice residents in the importance of
hospice and home health services. He has been active in the promotion of hospice and
pain and symptom control for over 20 years. He is the principal investigator for a
Kaiser Permanente project, supported by the Garfield Memorial Fund, to replicate the
TriCentral Palliative Care (TCPC) Program in Kaiser sites in Colorado and Hawaii. He
also was principal investigator for a prior project that evaluated the effectiveness of the
TCPC Program. In 2001, he and his colleague and Toolkit co-author, Kristine Hillary,
were co-awarded a Faculty Scholarship by the Soros Foundation’s Project on Death in
America for work in palliative care.
Kristine Hillary, M.S.N., R.N.P.
Kristine Hillary is the Director of Home Health and Hospice for Kaiser Permanente,
TriCentral Service Area in Downey, California. Ms. Hillary graduated in 1971 from
Lutheran Deaconess Hospital School of Nursing in Minneapolis, Minnesota. She holds
a BSN and MSN from California State University at Los Angeles and returned to
CSULA in 2000 for post-master’s certification as a nurse practitioner. The beginning
of her nursing career was spent in acute hospital settings, both in general medicalsurgical and intensive care units, as a staff nurse and supervisor. She has worked as a
clinician and administrator in hospice and palliative care for the past 15 years. Ms.
Hillary has participated in several research projects related to care and decision-making
at the end of life and has lectured frequently on developing a home- based model of
palliative care.
Contact Information
We welcome your questions, your suggestions for improvement, and your feedback
regarding this manual’s usefulness. Here’s how to contact us:
Richard D. Brumley, M.D.
Kaiser Permanente TriCentral Service
Area
12200 Bellflower Blvd.
Downey, CA 90242
(562) 622-4246; Fax (562) 622-4146
[email protected]
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
[email protected]
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
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
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:
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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 physicianassisted suicide as a means of ending the suffering of terminally ill patients. This
movement, which in 1994 led to a voter-approved initiative in Oregon that legalized
physician-assisted suicide under certain conditions, offers an extreme solution to a
widespread problem of pain control and individual choice. Gone are the days—only a
few generations ago—when Grandma lingered in the back bedroom under the watchful
care of the family doctor and took her final departure surrounded by family members
and close friends. Although most Americans still prefer to die at home, about 75% of
deaths occur in hospitals and nursing homes (Lynn, 1996). Indeed, most terminally ill
Americans experience what has been called an “Invisible Death” (Nuland, 1995).
Sequestered in healthcare institutions, they spend their last days—sometimes their last
weeks and months—isolated from family and friends, under the care of medical
strangers who have had little or no instruction in the “art of dying.” For many of the
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dying, quality of life is sacrificed as they undergo “heroic” treatments that too often are
medically futile and inappropriate, not to mention expensive. An estimated 10% to
12% of our nation’s total health care costs each year are spent on end-of-life care
(Scitovsky, 1994; Emanuel & Emanuel, 1994). “There is abundant evidence,” write
physicians Meier and Morrison, “that the quality of life during the dying process is
often poor, characterized by inadequately treated physical distress, fragmented care
systems, poor to absent communication between doctors and patients and families, and
enormous strains on family caregiver and support systems (1999:6).” These outcomes
are in large part a result of our recent healthcare revolution, which has given rise to
high-tech treatments that can extend life but also prolong dying, leaving some desperate
souls to wonder “When is enough enough?”
The opposite movement has not been political in nature but rather represents a shift in
patient use of hospice care. Medicare introduced the hospice program in 1983 as an
optional benefit for achieving a “good death” that substitutes “high-touch” for high
tech. Widely recognized as effective in improving quality of life for terminally ill
patients, hospice programs provide a range of services to control pain and provide
comfort care, primarily to individuals in their own homes. In the past decade, the
number of Medicare patients receiving hospice care has more than doubled. Today,
about 20 percent of patients who die in the United States receive hospice care. But
average lengths of stay in hospice have been dropping, from 64 days in 1992 to 48 days
in 1999 (NHO, 2000). Twenty-eight percent of Medicare patients in the hospice
program receive hospice care for one week or less (GAO 2000). One reason for this
shift in hospice use is patient unwillingness to forego curative care—and to abandon
hope despite a poor prognosis. The Medicare hospice program pays for medical
procedures necessary for pain control and other symptom management, but not those
aimed at curing the patient. As a result, many seriously ill patients resist the program
because “it shuns treatment and is a strong marker for imminent death (The Center to
Improve Care of the Dying, 2000).” Healthcare officials speculate that with the
development of new treatment options for life-threatening conditions, terminally ill
patients are waiting to enroll in hospice programs until after they have exhausted all
other alternatives (GAO, 2000). As one healthcare observer put it, “They are simply
unwilling to promise to die on schedule.”
This see-sawing between medically inappropriate care and too little care has prompted
calls for change and for blended models of care that view “relief of suffering and cure
of disease…as twin obligations of a medical profession that is truly dedicated to patient
care (Cassell, 1982).” One such blended model—and the basis for this toolkit—is
Kaiser Permanente’s TriCentral Palliative Care Program.
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KAISER PERMANENTE AND
THE TRICENTRAL SERVICE AREA
Kaiser Permanente (KP), the nation’s largest not-for-profit health plan, is an integrated
health delivery system that organizes and provides or coordinates members’ care,
including preventive care, hospital and medical services, and pharmacy services.
Among the various managed care models, KP is considered a traditional group model
HMO in that it is a not-for-profit healthcare system with its own staff and facilities, and
with active involvement of physicians in the decision-making process that affects
patient care.
KP’s mission is to provide affordable, high-quality healthcare services to improve the
health of its members and the communities it serves. KP serves 8.2 million members in
nine states—California, Colorado, Georgia, Hawaii, Maryland, Ohio, Oregon, Virginia,
Washington—and the District of Columbia.
KP serves the TriCentral area in Southern California through its medical centers in
three communities: Bellflower, Baldwin Park, and Harbor City. KP TriCentral serves
an estimated 630,000 members who reside in the area; its palliative care and hospice
programs are available to an additional 300,000 members who reside in neighboring
communities.
TRICENTRAL’S PALLIATIVE CARE PROGRAM
TriCentral’s Palliative Care (TCPC) Program was launched first as a pilot project in
1997 and then as a formal program in 1998 as a means of achieving balance in end-oflife care and helping seriously ill patients find peace and dignity between the extremes
of too little care and too much. The program was initiated as an alternative to KP’s
hospice program, which like other hospice programs across the country, was being
underused. At TriCentral, average survival time for hospice patients was 48 days from
the time of enrollment. Twenty-six percent of these patients died within the first seven
days of admission to the program; another 35 percent died in the remainder of the first
month. Many KP patients eligible for hospice care either refused services or were
never referred to the program for a variety of reasons, including physician uncertainty
in determining life expectancy, patient unwillingness to forego curative care (and
hope), and other negative connotations of the word “hospice.” As a result, patients
often died in acute-care hospital beds or intensive care units, sometimes following
bouts of medically futile care. In 1996 at TriCentral, 63% of the patients who died in
the intensive care unit and 54% of those who died in acute medical beds had a primary
or secondary diagnosis of one of three commonly fatal, incurable conditions: cancer,
congestive heart failure (CHF), or chronic obstructive pulmonary disease (COPD).
Frustrated and disturbed by these trends, we established the Palliative Care (PC)
program, an outpatient service housed in our Home Health Department that offers
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improved care to dying patients and their families. Modeled after KP’s hospice program
in that it offers superb pain management and other comfort care in the patient’s home,
the PC Program features three important modifications, all of them intended to promote
timely referrals to the program:
 Physicians are not required to give a six-month prognosis. Recognizing that it is
often difficult to estimate life expectancy, we relaxed referral guidelines.
Physicians are asked to refer any patient if they “would not be surprised if this
patient died in the next year.” Thus, as a general rule, palliative care patients are
accepted into the program with a prognosis of 12 months or less to live.
 While the Palliative Care Program emphasizes much improved pain control and
other symptom management, patients 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 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 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
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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. 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 inpatient 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.
ABOUT THIS TOOLKIT
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, technicalassistance, 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.
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 Program’s availability and special features.
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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 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
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
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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.
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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
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 offered—all 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 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.
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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 InHome 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.
HOW THE TCPC PROGRAM IS SIMILAR TO AND
DIFFERENT FROM HOSPICE CARE
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
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
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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.
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HOSPICE
PALLIATIVE CARE
HOSPICE ADMISSION CRITERIA
PALLIATIVE CARE ADMISSION CRITERIA
The Patient:
The Patient:
1.
Is a member of the Kaiser Permanente Health Care
Program.
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.
2.
Has a life threatening illness with an expected prognosis of 12
months.
3.
Is not receiving potentially curative therapy.
3.
Is homebound, requiring a considerable and taxing effort to
leave.
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.
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.
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.
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.
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.
Completes Hospice consents.
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.
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HOSPICE
PALLIATIVE CARE
HOSPICE PROVISION OF CARE AND TREATMENT OPTIONS PALLIATIVE CARE 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
1. The patient may or may not agree to a No Code Order. The
resuscitative care will be provided by emergency care
patient/family or Palliative Care staff may call 911, but
personnel such as paramedics. Calling 911 is not
resuscitative care will be provided by emergency care
encouraged. The cost of all services and care provided as a
personnel such as paramedics. Calling 911 is not encouraged.
result is not a covered Hospice benefit. Under certain
The cost of all services and care provided as a result is not a
circumstances these costs may be covered by another Kaiser
covered Hospice benefit. Under certain circumstances these
Foundation Health Plan benefit.
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
2. The Palliative Care Physician and Primary Physician are jointly
for care but treatments should be coordinated.
responsible for the patient’s care. Treatments should be
coordinated.
3. Supportive care is emphasized. More comprehensive
therapy may be provided but not encouraged such as:
3. Supportive care is emphasized. More aggressive therapy may
IV’s, TPN, NGT, transfusions, palliative chemotherapy.
be provided by the primary physician.
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.
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.
5. Bereavement support is provided to surviving family unit.
6.
24-hour after hours telephone support is provided.
6.
7.
Durable Medical Equipment and Oxygen is provided under
the Hospice benefit.
7. Durable Medical Equipment and Oxygen is provided based on
the patient’s Health Plan benefit.
24-hour after hours telephone support is provided.
8. Hospice Drug benefit is provided including prescription
and over-the-counter medications required for symptom
control.
8. Prescriptions are provided under the patient’s Health Plan
prescription drug benefit.
HOSPICE DISCHARGE CRITERIA
PALLIATIVE CARE DISCHARGE CRITERIA
1. Patient/Family seek curative therapy.
1. Patient converts to the Hospice benefit.
2. Patient elects to receive Skilled Nursing Benefit for qualifying
illness.
2. Patient/Family do not agree with the Palliative Care admission
criteria.
3. The Hospice Physician is unable to certify that the patient has a
terminal diagnosis with a six-month prognosis.
3. Patient condition stabilizes or symptoms are under control with
minimal risk of decline.
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.
12
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 patient’s illness, as depicted in Figure 1. Palliative
care is seldomly provided during this period. Not until the very last phase of life, when
the 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 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
Curative / Restorative Therapy
Presentation/
Diagnosis
Illness
Acute
Chronic
Death
Life
Threatening
Figure 1
Adapted from Frank D. Ferris, 2000
13
H
O
S
P
I
C
E
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 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
Curative/Restorative
Therapy
Palliative Therapy
Presentation/Diagnosis
Acute
Illness
Chronic
Death
Life Threatening
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
emergency services. The study compared 210 patients in the TCPC Program with a
14
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.
15
CHAPTER 3
A
BUILDING
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 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.
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
16
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.
ESTABLISH LEADERSHIP
17
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 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.
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 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.
18
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 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






19
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 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 30-40 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.
20
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
21
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)
 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 patient’s 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 selfmanagement 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
22
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, 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
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 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
23
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 wouldn’t 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 family’s liaison to the patient’s healthcare providers. A palliative
care nurse assesses the caregiver’s needs upon admission of the patient and conducts
regular reassessments to ensure that the caregiver’s 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 patient’s designated healthcare
proxy.
Physicians: In the TCPC Program, a palliative care physician and the patient’s
primary physician jointly share responsibility for the patient’s care. In practice, the
palliative physician typically undertakes most ongoing medical services while
coordinating care from other providers, including the patient’s 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 patient’s
care in consultation with the patient and family. Patient choice and informed decisionmaking 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 patient’s condition are
reported to the palliative care physician and documented in the patient’s clinical record.
24
In turn, the palliative care physician communicates or collaborates with the patient’s
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 patient’s 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
patient’s physical, emotional, spiritual, social, psychological, and cultural status. The
nurse assesses the patient’s and family’s 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 patient’s 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 patient’s and family’s 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 endof-life care according to patients—receiving 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
avoid—issues such as death and dying, substitute decision making for life-sustaining
25
treatment, and memorial planning. They help alleviate the burden on family members
by assessing the patient’s and family’s 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 patient’s 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 patient’s
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.
Discipline
Physician
Registered Nurse
Social Service
Certified Home Health Aide
Liaison/Intake Registered Nurse
Clinical Nurse Supervisor
Spiritual Counselor/Chaplain
Program Director
Clerk
26
Ratio
(Staff to Patients)
1:80
1:14
1:25
1:25
1: 100
1:50
Full Time Equivalent (FTE)
(Based on 30-patient census)
0.4
2.2
1.2
1.2
0.3
0.6
1:125
1:100
1:30
0.2
0.3
1.0
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. Selfreferrals 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.
1. Has a life threatening illness—typically cancer, congestive heart failure (CHF), or
chronic obstructive pulmonary disease (COPD)—with an expected prognosis of 12
months or less.
2. Is homebound, requiring a considerable and taxing effort to leave.
3. 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.
4. Has a primary care person available to provide care, or to ensure that an appropriate
caregiver is available to provide care when necessary.
5. 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.
6. 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.
7. Scores 7 or less on the Palliative Performance Scale, which provides an assessment
of the patient’s functional status while measuring the progressive decline in the
person’s health (see the Appendix for a copy).
27
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:
1. A hospice/palliative care intake nurse (RN) conducts the initial screening of patients
by telephone or in-person using the program’s screening tool (presented in the
Appendix).
2. A palliative care nurse who is a member of the IDT completes the initial
assessment of a new patient in the patient’s 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/family’s 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 patient’s medical records and plan of care is
available in the patient’s home for ongoing use and reference by IDT members.
3. 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
patient’s admission.
4. The IDT informs all other physicians involved in the patient’s care (i.e., the primary
physician and any specialists) of the patient’s admission to the TCPC Program.
28
Admission Flowchart
MD,
Hospice/Palliative
Liaison RN, DC
Planners, Disease
Case Managers, selfreferred, Etc.
Referral
Hospice/
Palliative
Intake RN
RN
No, primary
MD
notified
KP
Eligibility
Screening

Yes
Palliative vs.
Hospice
Screening
Palliative Care
Accepted
Hospice
Accepted
Not
Accepted,
Primary MD
notified





Bio-psychosocial
management
IDT
Plan of Care
Advance Care Planning
24/7
Admission
29
Palliative
Care Offered
per Criteria
Not
Accepted,
Primary MD
notified
Accepted



RN home visit admission
assessment
Informed Consent
MD certification



Informed Consent
Not
Accepted,
Primary MD
notified
CARE PLANNING
The Plan of Care
“I have very definite ideas of what I would want done and what I wouldn’t want
done...”
“It’s very, very important to me now that I can make choices for myself.”
“I want control, but it shouldn’t be disruptive. It can be productive if it’s 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 endof-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 patient’s
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 patient’s illness and prognosis, receive
education and instruction in managing the patient’s 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 patient’s 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 patient’s needs,
30
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 patient’s and family’s 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 patient’s 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
patient’s medical records, in a binder that is left in the patient’s 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 family’s needs and service
preferences. Many tasks will be completed during the first week of a patient’s
admission. Others will be completed during subsequent home visits. But all should be
completed during the course of the patient’s stay in the TCPC Program.
31
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
PAIN MANAGEMENT
_____ *Review and update Advance Directive and DNR
_____ Assessed disease process and reviewed pain
_____ Review Hospice Philosophy
management
_____Review 4 levels of care. Ascertain preferred
_____Instructed patient/family route of medication
place of death
(sub-lingual/rectal) - Syringe provided
_____ Review call system/Triage. How to contact
_____ Instructed regarding frequency of meds, adjusting dosage
Hospice 24-hours day. Discuss use of 911 versus calls to Hospice
for patients comfort and what meds to use
_____ *Continue instructions in funeral planning and what to do when
_____ Check for adequate supply of pain meds in the home
patient dies
_____ Assess for immediate need for other visits,
CONSTIPATION
(i.e., MSW, Chaplain, CHHA, M.D.)
_____ Instructed/reviewed bowel regimen
_____ *Review signs and symptoms of death and dying
_____ Checked patient for fecal impaction if indicated.
_____ Discuss home safety
_____ Ordered Ducolax supp, fleet enema as needed
_____Consider increased frequency of visits for
each discipline
URINARY
_____ Communicate Plan of Care to team members
_____ Assessed when patient last voided – retention
including Triage as needed
_____ Anticipated for foley catheter need
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
Signature/Title
32
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.
______________________________________
______________________________________
_____________________________________
Initial/Date
Signature/Title
Initial/
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
patient’s 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 patient’s care.
Nurse Visits to Home: Skilled nursing services are provided by or under the
supervision of a registered nurse, in accordance with the patient’s 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 patient’s 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.
33
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 patient’s
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 patient’s 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
34
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 family’s 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 patient’s 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 afterhours 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 patient’s 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 patient’s 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 patient’s preference and treatment
35
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 patient’s Health Plan benefit.
Prescriptions are provided under the patient’s Health Plan prescription drug benefit.
36
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 patient’s 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 patient’s chart including
relevant actions and decisions leading to the patient’s 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 patient’s assessment
and care plan will be updated or completed anew, as recommended by the TCPC
physician.
37
CHAPTER 5
QUALITY MANAGEMENT PLAN
To survive in today’s 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 organization’s 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 Permanente’s “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
38
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 Permanente’s 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 few—those highlighted below—
are especially sensitive to the program’s unique focus on providing pain management
and other comfort care in the patient’s home and in accordance with the patient’s
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 patient’s 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
39


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
40
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 organization’s 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-DoCheck-Act (PDCA) cycle to implement interventions aimed at improving care
processes and performance. Below, excerpted from KP’s “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
41
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.
42
DIVISIONAL AND REGIONAL INDICATORS AND INDICATOR WORKSHEETS
Domains of
Quality
Home Health
Quality management Indicators
REG OR
DIV
Frequency of Data
Collection &
Reporting
Reported Locally
or Aggregated
Centrally
Satisfaction
 Home Health Patient Satisfaction Survey
 Patient Satisfaction
 REG
 REG
 Quarterly
 Quarterly
Central








REG
REG
DIV
DIV




Annual
Annual
Quarterly
Review Process
Quarterly











DIV
DIV
REG
DIV




Quarterly
Monthly
Quarterly
Quarterly




Local
Central
Local
Local
Clinical Quality
Infection Control
Risk Management
Compliance
Contract Services
OASIS Database
Quality




















Utilization
Management
43

Provider Satisfaction
Staff Satisfaction
Complaints Tracking
Patient Clinical Record Review – Minimum
content defined in Medical Record/Utilization
Management Monitoring Tool
OASIS Adverse Event Monitoring
Pain Management
Rate of Infections
Unusual Occurrence Reporting
Significant Adverse Drug Reactions
Significant Medication Errors
OASIS Adverse Event Monitoring
Frequency and Duration Orders
Interdisciplinary Communication
Medical Record/Utilization Management
Monitoring Tool
Service Agreement Providers
Supplemental Staff Providers
Complaints Monitoring
OASIS Primary Diagnosis Appropriate
OASIS ICD-9-Coding Accurate for Primary
Diagnosis
OASIS Data Entry Accuracy (when manually
entering data)
Documentation supports OASIS assessment
OASIS RN completes initial assessment when
another discipline ordered at referral
Independent Audit of Primary Diagnosis and
Coding Accuracy
Re-certification visit completed between day
56 and 60 for OASIS assessment
Service Utilization Appropriate
Local
Local
Local
Central
Local
 DIV
 DIV
 DIV
 Monthly
 Monthly
 Semi-Annually
 Central
 Central
 Local
 DIV
 Annual
 Local
 DIV
 DIV
 DIV
 Quarterly
 Semi-annual
 Semi-annual
 Central
 Local
 Local
 DIV
 Semi-annual
 Local
 DIV
 DIV
 Monthly
 Semi-annual
 Central
 Local
 DIV
 Annual
 Central
 DIV
 Semi-annual
 Local
 DIV
 Quarterly
 Local
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 there’s a will, there’s 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 streams—for 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 hospitalbased 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
44
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 healthcare—
from physicians to financing—into 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 patient’s 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
Kaiser’s 296,000 members aged 65 and older, 10% of the total membership, are
covered by Medicare+Choice. Under this program, Kaiser receives an inclusive,
45
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, Kaiser’s 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-yearold 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 costs—for both inpatient and
outpatient care—were 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 home—the expressed preference of most of these patients—
compared 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.
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Overview of Medicare Home Health Services
Eligibility: Medicare’s 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
47

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 Works—and Doesn’t 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 patient’s 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 patient’s 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
48
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 (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
www.cms.gov/medicaid/waivers/waivermap.asp.
.
49
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