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entitled 'End-Of-Life Care: Key Components Provided by Programs in Four 
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Report to the Honorable Ron Wyden, U.S. Senate: 

United States Government Accountability Office: 

GAO: 

December 2007: 

End-of-Life Care: 

Key Components Provided by Programs in Four States: 

End-of-Life Care: 

GAO-08-66: 

GAO Highlights: 

Highlights of GAO-08-66, a report to the Honorable Ron Wyden, U.S. 
Senate. 

Why GAO Did This Study: 

Approximately 28 percent of all Medicare spending in 1999 was used to 
provide care for beneficiaries in the last year of their lives. The 
Medicare hospice benefit is specifically designed for end-of-life care 
but is an elected benefit for individuals who have a terminal diagnosis 
with a prognosis of 6 months or less if the disease runs its normal 
course. GAO was asked to identify examples of programs that provide key 
components of end-of-life care. Specifically, GAO (1) identified key 
components of end-of-life care, (2) identified and described how 
certain programs incorporate key components of end-of-life care, and 
(3) described the challenges program providers have identified to 
delivering the key components of end-of-life care. To identify the key 
components of end-of-life care, GAO relied on studies by the Institute 
of Medicine (IOM) and the Agency for Healthcare Research and Quality 
(AHRQ). To identify and describe programs that implement these key 
components and describe the challenges providers of these programs 
face, GAO conducted site visits to four states, Arizona, Florida, 
Oregon, and Wisconsin, that, in addition to other criteria, 
demonstrated a high use of end-of-life services. We interviewed 
officials of federal, state, and private programs in these four states 
that provide care to individuals nearing the end of life. 

What GAO Found: 

The IOM and AHRQ studies identified the following key components in 
providing care to individuals nearing the end of life: care management 
to coordinate and facilitate service delivery; supportive services, 
such as transportation, provided to individuals residing in 
noninstitutional settings; pain and symptom management; family and 
caregiver support such as respite care; communication among the 
individuals, families, and program staff; and assistance with advance 
care planning to aid individuals with making decisions about their 
future care. 

The programs GAO identified in the four states incorporate key 
components of end-of-life care when delivering services to individuals 
nearing the end of life. These programs use care management, either 
through a case manager or an interdisciplinary care team of health care 
professionals, to ensure continuity of care and the delivery of 
appropriate services. The programs also provide supportive services, 
such as personal care services or meal delivery, to assist individuals 
in their homes. Pain and symptom management is provided by these 
programs to treat pain and other symptoms of an individual who is 
seriously ill. These programs provide family and caregiver support 
through services that alleviate demands on the caregiver and by 
providing bereavement support for family members. The programs foster 
communication with individuals and family members to plan care that 
reflects each individual’s choices. In addition, these programs use 
tools such as electronic medical records to facilitate communication 
among staff members. The programs GAO identified initiate and encourage 
advance care planning for the end of life and assist individuals with 
making decisions about future medical care, such as completing advance 
directives and identifying health care proxies, that is, those who can 
make health care decisions on behalf of the individual. 

Providers of the programs GAO identified described challenges they 
encounter to delivering some of the key components of end-of-life care. 
Providers described difficulties delivering supportive services and 
family and caregiver supports to rural residents because of travel 
distances, fewer community-based service options, and an inability to 
hire adequate numbers of staff in rural areas. Providers also stated 
that, in their experience, physician training and practices can inhibit 
the provision of pain and symptom management and advance care planning 
to individuals nearing the end of life. A recent article published in a 
medical journal GAO reviewed identified similar issues with physician 
training and practices. 

The Centers for Medicare & Medicaid Services (CMS), the agency that 
administers Medicare and Medicaid, commented that the report is a 
useful description of diverse provider types that deliver services to 
persons coming to the end of life. CMS noted that the report is 
especially helpful as a time approaches when more Americans will be 
living with serious and eventually fatal chronic conditions. 

To view the full product, including the scope and methodology, click on 
[hyperlink, http://www.GAO-08-66]. For more information, contact 
Kathleen King at (202) 512-7114 or kingk@gao.gov. 

[End of section] 

Contents: 

Letter: 

Results in Brief: 

Background: 

Key Components of End-of-Life Care: 

Programs Incorporate Key Components of End-of-Life Care: 

Providers Find Challenges to Delivering Certain Key Components of End- 
of-Life Care: 

Agency Comments and Our Evaluation: 

Appendix I: Comments from the Centers for Medicare & Medicaid Services: 

Appendix II: GAO Contact and Staff Acknowledgments: 

Abbreviations: 

ABMS: American Board of Medical Specialties: 
AHRQ: Agency for Healthcare Research and Quality: 
ALTCS: Arizona Long Term Care System: 
CMS: Centers for Medicare & Medicaid Services: 
COPD: chronic obstructive pulmonary disease: 
IOM: Institute of Medicine: 
NAHC: National Association for Home Care and Hospice: 
NEJM: New England Journal of Medicine: 
NHPCO: National Hospice and Palliative Care Organization: 
PACE: Program of All-Inclusive Care for the Elderly: 
POLST: Physician Orders for Life-Sustaining Treatment: 
WPP: Wisconsin Partnership Program: 

United States Government Accountability Office: 

Washington, DC 20548: 

December 14, 2007: 

The Honorable Ron Wyden: 
United States Senate: 

Dear Senator Wyden: 

In 1999, approximately 28 percent of all Medicare spending was used to 
provide care for beneficiaries in the last year of their 
lives.[Footnote 1] A large percentage of this spending was for 
institutional services such as hospital inpatient or nursing home care; 
for example, slightly more than 58 percent of this spending was for 
hospital inpatient services. In that same year, approximately 1.5 
million individuals over age 65 resided in nursing homes. Sixty-two 
percent of these individuals had their nursing home care paid for by 
Medicaid and about 16 percent had their care paid for by 
Medicare.[Footnote 2],[Footnote 3] However, there are alternatives to 
institution-based end-of-life care, such as home and community-based 
services. In 2005, the Administrator of the Centers for Medicare & 
Medicaid Services (CMS), the federal agency that administers Medicare 
and Medicaid, testified that providing home and community-based 
services, such as personal care services,[Footnote 4] can be a cost- 
effective way to provide end-of-life care while increasing personal 
autonomy and allowing individuals to live in their homes, surrounded by 
friends and family.[Footnote 5] 

Advances in treating diseases have lengthened the life expectancy of 
Americans, and chronic conditions such as heart failure, diabetes, or 
kidney failure are no longer immediately fatal and can be treated or 
managed with medication. As a result, more than 80 percent of Americans 
lived past age 65 in 2000; however, many individuals live their last 
years of life with chronic conditions. For example, according to the 
2003 Medicare Current Beneficiary Survey, 21 percent of beneficiaries 
have had a diagnosis of diabetes, 5 percent have had a diagnosis of 
Alzheimer's disease, and 15 percent have had a diagnosis of pulmonary 
disease, such as chronic obstructive pulmonary disease (COPD). In 
addition, 73 percent of beneficiaries reported that they had two or 
more chronic conditions. Medicare beneficiaries with chronic health 
conditions use many health care resources. Ninety percent of Medicare 
beneficiaries over age 65 live with a chronic condition in the year 
before death. 

Medicare has a program that is specifically designed for end-of-life 
care, the hospice benefit. The hospice benefit is designed to provide 
comfort and pain relief and emotional and spiritual support to 
individuals with a terminal illness, generally in a home setting. 
Medicare hospice services include, for example, nursing care, 
counseling, and homemaker services, as well as drugs and medical 
supplies. However, not all individuals nearing the end of life may 
qualify for or elect to receive care under this benefit. To be eligible 
for the benefit, a physician must certify an individual as having a 
life expectancy of 6 months or less if his or her illness runs its 
normal course. Physicians certifying patients for hospice are expected 
to use their best clinical judgment regarding the normal course of the 
individual's illness. However, the course of many conditions, such as 
COPD, is often uncertain, making it difficult for physicians to predict 
accurately the life expectancy of individuals with these conditions 
and, therefore, refer them to hospice. In addition, a beneficiary who 
elects hospice must waive Medicare coverage for curative care related 
to the terminal illness for the period the election is in 
effect.[Footnote 6] Some individuals are reluctant to forgo curative 
care for their terminal illness and, therefore, do not elect hospice. 

You are interested in health care services delivered to individuals who 
are nearing the end of life and asked us to identify examples of 
programs, other than hospice, that provide key components of end-of- 
life care. In this report, we (1) identify key components of end-of- 
life care, (2) identify and describe how certain programs incorporate 
key components of end-of-life care, and (3) describe the challenges 
program providers have identified to delivering the key components of 
end-of-life care. 

To identify key components of end-of-life care, we interviewed 
officials from CMS and 10 national independent and academic researchers 
in end-of-life and long-term care. In addition, we interviewed 
officials from the National Hospice and Palliative Care Organization 
(NHPCO) and the National Association for Home Care and Hospice (NAHC), 
industry organizations that represent home care agencies, hospices, and 
palliative care providers. Based on these interviews, we identified and 
relied primarily on two extensive studies to identify the key 
components of end-of-life care: a 1997 Institute of Medicine (IOM) 
study and a 2004 study published by the Agency for Healthcare Research 
and Quality (AHRQ).[Footnote 7],[Footnote 8] The IOM study identified 
factors that promote high-quality care for individuals near the end of 
life. The report was prepared by an IOM-appointed committee that 
included health care professionals and researchers with expertise in 
geriatrics, end-of-life care, chronic illness and disability, pain 
management, and long-term care. The committee prepared this report with 
the objective of stimulating discussion, encouraging consensus on how 
care for those approaching death can be improved, and encouraging 
action to implement that consensus. The AHRQ report is a study on the 
state of the science regarding end-of-life care. It includes a 
comprehensive review of the literature that addresses the effectiveness 
of specific health care interventions for improving outcomes in 
individuals at the end of life. In preparing its report, AHRQ reviewed 
a total of 5,165 abstracts applicable to the report's key questions 
that were published in the English language, appeared in journals from 
1990 through 2004, involved human subjects, and did not include 
individual case reports. The AHRQ report was peer reviewed by a 
multidisciplinary technical expert panel that included leading 
scientists and clinicians in nursing, gerontology, and palliative 
medicine and others with a broad knowledge of relevant research and 
policy issues. 

To identify the programs that deliver key components of end-of-life 
care and describe how they incorporate these key components, we first 
interviewed the officials from CMS, NHPCO, and NAHC and the 10 national 
independent and academic researchers in end-of-life and long-term care. 
We also used 2001 data from the U.S. Census Bureau to identify states 
that had a high percentage of population age 65 and over. We reviewed 
2003 data from the National Center for Health Care Statistics and 2000 
through 2003 data from The Dartmouth Atlas of Health Care to identify 
states that had low health care service utilization as a proxy for 
higher-than-average use of care management.[Footnote 9] In addition, we 
examined fiscal year 2004 Medicaid data on states' spending for certain 
home and community-based services. We reviewed data on the utilization 
of Medicare hospice services at the end of life from a study published 
in 2002 as a proxy for individuals who use noninstitutional services 
for end-of-life care. Using information from our interviews and these 
data, we identified 14 states that meet at least one of the following 
criteria: a high proportion of individuals over age 65, low health care 
service utilization, a high proportion of Medicaid spending for home 
and community-based services relative to spending for institutional 
services, or a high proportion of individuals who use hospice services 
at the end of life. From the 14 states we identified, we selected 4 
states, Arizona, Florida, Oregon, and Wisconsin, that are 
geographically diverse and have at least one state or local program 
that provides care to individuals nearing the end of life. We 
identified programs in these states that provide care to individuals 
nearing the end of life and interviewed representatives of providers of 
these programs: the Program of All-Inclusive Care for the Elderly 
(PACE), the Wisconsin Partnership Program (WPP), the Medicaid Arizona 
Long Term Care System (ALTCS), and palliative care programs. To 
describe how these programs incorporate key components of end-of-life 
care, we conducted site visits to interview representatives of PACE 
providers in Florida, Oregon, and Wisconsin; representatives of three 
providers of WPP;[Footnote 10] state officials from the ALTCS program; 
and representatives of at least 2 palliative care programs in each of 
the four states for a total of 12 palliative care programs.[Footnote 
11] 

To describe the challenges these programs encounter in providing the 
key components of end-of-life care, we conducted site visits to 
interview representatives of PACE providers in Florida, Oregon, and 
Wisconsin; representatives of three providers of WPP; state officials 
from the ALTCS program; and representatives of at least 2 palliative 
care programs in each of the four states for a total of 12 palliative 
care programs. We performed our work from June 2005 through August 2007 
in accordance with generally accepted government auditing standards. 

Results in Brief: 

The IOM and AHRQ studies identified six key components in providing 
care at the end of life. These were care management to coordinate and 
facilitate service delivery; supportive services to assist individuals 
residing in noninstitutional settings; pain and symptom management; 
family and caregiver support; communication among the individuals, 
families, and program staff; and assistance with advance care planning 
to aid individuals with making decisions about their future care. 

The programs we identified in four states that incorporate these key 
components of end-of-life care when delivering services to individuals 
nearing the end of life are PACE, WPP, ALTCS, and palliative care 
programs. These programs use care management, either through a case 
manager or an interdisciplinary care team of providers, to ensure 
continuity of care and the delivery of appropriate services; supportive 
services such as personal care services to assist individuals with 
daily activities or transportation to access medical care; pain and 
symptom management to improve quality of life and assist with 
transitions at the end of life; family and caregiver support through 
services that alleviate demands on the caregiver and provide 
bereavement support; communication to assist individuals and their 
families with developing care plans that reflect their choices; and 
advance care planning to assist individuals with decision making at the 
end of life. 

Providers we interviewed in the four states found challenges to 
delivering some key components of end-of-life care. Representatives of 
the providers described difficulties providing supportive services and 
family and caregiver support to rural residents because of travel 
distances, fewer community-based service options, and an inability to 
hire adequate numbers of staff in rural areas. Provider representatives 
also stated that, in their experience, physician training and practices 
can inhibit the provision of pain and symptom management and advance 
care planning to individuals nearing the end of life. A recent article 
published in a medical journal we reviewed identified similar issues 
with physician training and practices. 

In commenting on a draft of this report, CMS stated that the report is 
a useful description of a diverse set of provider types in very 
different settings providing services to persons coming to the end of 
life, and is especially helpful as a time approaches when more 
Americans will be living with serious and eventually fatal chronic 
conditions. CMS noted that it was useful that our report included 
individuals living with serious chronic conditions who might live for 
some years. 

Background: 

PACE integrates Medicare and Medicaid financing to provide 
comprehensive delivery of those programs' services to individuals age 
55 and older who have been certified as eligible for nursing home care 
by a state under Medicaid. PACE providers are, or are a separate part 
of, government entities or are not-for-profit private or public 
entities that provide PACE services to eligible individuals. PACE 
services include, but are not limited to, all Medicare services and all 
Medicaid services as specified in the state plan.[Footnote 12] Adult 
day care, medical treatment, home health and personal care, 
prescription drugs, social services, restorative therapies, respite 
care,[Footnote 13] and hospital and nursing home care when necessary 
are all required services under PACE. For most individuals, the 
comprehensive services offered by PACE allow them to live in their 
homes. CMS requires that each PACE provider operate an adult day center 
for its beneficiaries. 

WPP is a state-sponsored program that integrates Medicare and Medicaid 
financing to provide comprehensive delivery of those programs' services 
to individuals age 55 and older and individuals age 18 and older with 
physical disabilities who have been certified by Wisconsin as eligible 
for nursing home care. To deliver WPP services, the state contracts 
with organizations to provide eligible individuals with primary, acute, 
and long-term care services; prescription drugs; rehabilitation 
services and physical therapy; adult day care; nursing home care; 
durable medical equipment and supplies; and other services such as meal 
delivery and transportation to medical appointments. The comprehensive 
services provided by WPP are intended to allow individuals to live in 
the setting of their choice. While similar to PACE, WPP does not 
require that providers operate an adult day center. 

ALTCS, the long-term care division of the Arizona Medicaid program, 
serves individuals who are age 65 and over, blind, or disabled and who 
need ongoing services at a nursing home level of care. Arizona provides 
all its Medicaid services through a Medicaid waiver, which allows some 
flexibility in the design and administration of the program.[Footnote 
14] In Arizona, ALTCS contracts with providers to deliver acute medical 
care services, institutional care, hospice, behavioral health services, 
home health, homemaker services, personal care, respite care, 
transportation, adult day care, and home delivered meals. Many ALTCS 
participants are able to live in their own homes or in assisted living 
facility and receive in-home services. 

Palliative care programs are operated by a variety of health care 
entities, including hospitals, health care systems, and hospices. These 
programs generally do not receive federal or state funding and may rely 
on private grants or charitable support. Palliative care programs are 
designed to improve the quality of a seriously ill individual's life 
and support the individual and his or her family during and after 
treatment. Services provided by palliative care programs vary and may 
include pain and symptom management, assistance with planning for 
additional services, and psychosocial and spiritual support and can be 
provided in conjunction with curative care. 

Key Components of End-of-Life Care: 

The IOM and AHRQ studies identified the following key components in 
providing care to individuals nearing the end of life: care management; 
supportive services for individuals; pain and symptom management; 
family and caregiver support; communication among the individuals, 
families, and program staff; and assistance with advance care planning. 
Care management, also referred to as case management, interdisciplinary 
care, or care coordination, is the coordination and facilitation of 
service delivery and can be provided by a team or a single manager. 
Supportive services include personal care services, home delivered 
meals, transportation to medical appointments, and other services that 
assist individuals who reside in noninstitutional settings. Pain and 
symptom management is pharmacological and nonpharmacological therapies, 
such as massage therapy, to treat pain and other symptoms of an 
individual who is seriously ill. Family and caregiver support are 
services that provide assistance to those caring for an individual 
nearing the end of life in his or her home and can include respite care 
and bereavement counseling. Communication among individuals, families, 
and program staff includes discussions regarding end-of-life issues 
with individuals and their family members and the use of various tools 
to foster communication among program staff. Advance care planning is 
the process by which individuals make decisions about their future care 
and may include the completion of written documents, such as advance 
directives.[Footnote 15] 

Specifically, IOM reported that for individuals nearing the end of 
life, care systems should ensure that the following are provided: 
interdisciplinary care management; home care or personal care services, 
which we refer to as supportive services; pain and symptom management; 
supportive care for caregivers and family through services such as 
respite care or housekeeping services; and communication. The IOM 
report also identified advance care planning as a key component of end- 
of-life care. The IOM report recommended that people nearing the end of 
life should receive supportive services managed by those involved in 
their care and that health care organizations should facilitate advance 
care planning. In addition, the IOM report recommended that health care 
professionals improve care for individuals nearing the end of life by 
providing pain and symptom management. 

The AHRQ report focused on identifying outcomes that can indicate the 
quality of the end-of-life experience and identifying the patient, 
family, and health care system factors that are associated with better 
or worse outcomes at the end of life. The AHRQ report identified 
continuity of health care, such as that provided through care 
management; supportive services, such as home care services; pain and 
symptom management; support for families and caregivers; and effective 
communication among program staff, which could include improved medical 
record documentation, as core components of end-of-life care. 

The programs we identified in four states that incorporate key 
components of end-of-life care described in the IOM and AHRQ reports 
are PACE, WPP, ALTCS, and palliative care programs. These programs use 
care management to ensure continuity of care and supportive services, 
such as personal care services, to assist individuals nearing the end 
of life. These programs also integrate pain and symptom management into 
their services; provide family and caregiver support; foster 
communication among the individuals, families, and program staff; and 
initiate or encourage advance care planning. 

Programs Use Care Management to Ensure Continuity of Care: 

Care management is used by all of the programs we identified to ensure 
continuity of care for individuals nearing the end of life. Most of 
these programs provide care management through interdisciplinary care 
teams. The interdisciplinary care teams of PACE providers include a 
primary care physician, nurse, social worker, physical therapist, 
occupational therapist, recreational therapist or activity coordinator, 
dietitian, PACE adult day center manager, health care aides, and 
transportation providers. PACE beneficiaries attend a PACE adult day 
center where they receive services from the interdisciplinary care 
team. The WPP providers use an interdisciplinary care team approach 
similar to PACE, although the teams are generally smaller. 
Representatives of two WPP providers we interviewed stated that care 
management reduces hospitalizations. Representatives of one of these 
providers stated that care management ensures that individuals admitted 
to a hospital are discharged to an appropriate setting to avoid 
unnecessary readmission. Representatives of the second WPP provider 
stated that care management improves the medical care of individuals by 
providing physicians with an accurate picture of individuals' health 
status and assisting individuals with accessing physicians in a timely 
manner. Representatives of both PACE and WPP providers stated that the 
interdisciplinary care teams meet to exchange information, ensure that 
individuals' needs are being met, and address changes in the health 
status of individuals. 

The four hospital-based palliative care programs we identified use 
interdisciplinary care teams to coordinate services. These programs' 
teams include medical directors, social workers, chaplains, nurses, 
psychologists, and case managers. Two of the hospice-based palliative 
care programs developed partnerships with local hospitals and use 
interdisciplinary care teams to assist individuals. Two other hospice- 
based palliative care programs use interdisciplinary care teams of 
health care professionals to coordinate medical, nursing, social work, 
and spiritual services. Staff from one of these programs told us that 
because case managers facilitate communication among different medical 
providers and ensure that tests performed have a clear purpose, 
unnecessary or duplicate tests are avoided. One hospice-based 
palliative care program's interdisciplinary care team consists of a 
nurse, social worker, and palliative care physician who coordinate care 
and monitor the quality of care provided. The two palliative care 
programs operated by health care systems use interdisciplinary care 
teams composed of nurses, social workers, chaplains, and pharmacists. 
The care team of one of these palliative care programs makes treatment 
recommendations and enhances coordination among medical staff. The 
other of these palliative care programs provides social and 
psychological support and assists individuals with transitioning 
between the hospital and their homes. One hospice-based palliative care 
program uses a single case manager to assist individuals with 
coordinating services. 

In the ALTCS program, each Medicaid beneficiary is assigned a case 
manager. The case manager aids the beneficiary in obtaining necessary 
services, coordinates service delivery, and consults with other 
providers as needed. ALTCS case managers refer beneficiaries to other 
social service agencies when additional services are needed. ALTCS 
officials noted that a unique feature of the program is that it 
provides institutional, supportive, and all other medical and long-term 
care services under one agency and under the supervision of a single 
case manager for each beneficiary. An official also noted that the 
ALTCS program fosters continuity of care and care coordination at the 
end of life through the case manager and the integrated delivery of 
services from a single agency. 

Programs Use Supportive Services: 

The programs we identified provide a variety of supportive services to 
assist individuals near the end of life. The PACE providers we 
interviewed are required to deliver supportive services such as 
personal care services, adult day care, social work services, and meal 
delivery. Representatives of one PACE provider stated that one strength 
of PACE is the integration of all Medicare-and Medicaid-covered 
services, which includes the supportive services, such as personal care 
services, covered by Medicaid. Representatives of a PACE provider 
reported that when individuals become too frail to come to the day 
center, a designated team visits individuals in their homes to provide 
personal care, nursing, and physician services. Representatives of this 
provider also described how they assist individuals residing in 
residential care facilities and adult foster homes who are nearing the 
end of life by providing additional staff support and visits from the 
primary care physician. 

The supportive services offered by WPP providers include social 
services, personal care services, adult day care, environmental 
adaptations,[Footnote 16] meal delivery, and transportation to medical 
appointments. Representatives of a WPP provider stated that they also 
involve local community resources such as religious institutions and 
friends to ensure that individuals receive the assistance they need in 
their homes and communities. Representatives of another WPP provider 
stated that the most common supportive services they provide are home 
care, transportation, and day center activities. Representatives of 
this provider noted that as individuals get closer to the end of life, 
additional home care support can be provided. 

Supportive services provided by the ALTCS program include home health 
services, homemaker services, personal care, transportation, adult day 
care, and home delivered meals. ALTCS officials stated that the type of 
supportive services provided can vary significantly depending on a 
beneficiary's level of functioning and the level of support provided by 
the family. A CMS official noted that two-thirds of ALTCS beneficiaries 
receive supportive services in their homes or communities, which the 
official cited as being above the national average. 

The palliative care programs we identified either provide supportive 
services directly to individuals nearing the end of life or assist 
individuals with obtaining such services. One hospice-based palliative 
care program provides individuals telephone calls and visits and 
assists individuals with applying for other benefits. Another hospice- 
based palliative care program provides supportive care that includes 
nursing and social work services and spiritual counseling. A palliative 
care program that is operated by a health care system provides 
individuals with 24-hour nursing support and pastoral services. A 
palliative care program operated by a hospital helps individuals 
establish supportive services, such as personal care services, at the 
time of discharge from the hospital. 

Programs Provide Pain and Symptom Management: 

All the programs we identified provide pain and symptom management or 
assist with the coordination of such services. Representatives of the 
WPP and PACE providers we interviewed incorporate pain and symptom 
management into the care they provide. For example, representatives of 
a provider of both PACE and WPP described how individuals they serve 
are able to receive pain and symptom management services whenever they 
feel such services are necessary. One PACE provider we interviewed 
offers pain and symptom management to individuals nearing the end of 
life, and a palliative care team visits individuals in the home when 
they are unable to attend the PACE day center. Other providers of PACE 
and WPP obtain assistance from local hospices to help provide pain and 
symptom management services, such as overnight nursing, spiritual care, 
or pain management. ALTCS provides pain and symptom management to 
individuals when such services are needed. Representatives of the 12 
palliative care providers we interviewed provide or assist with 
coordinating pain and symptom management for individuals in either the 
home or hospital setting. 

Programs Offer Family and Caregiver Support: 

Programs we identified offer family and caregiver support through a 
variety of services. PACE and WPP providers offer family and caregiver 
support through personal care services, which can help alleviate 
demands on a caregiver, and respite services provided in the home. In 
addition, the adult day centers operated by the PACE providers we 
visited offer respite opportunities for the caregivers of the 
individuals who attend the day care programs. One WPP provider also 
operates a day center to provide caregivers with respite. The ALTCS 
program provides support for caregivers through personal care, respite, 
and adult day care services. 

Most of the palliative care programs we identified also provide support 
to family members and caregivers. They provide this support in a 
variety of ways. Two hospice-based palliative care programs use social 
workers to assist families and caregivers with end-of-life decision 
making and accessing community agencies and resources. Another hospice- 
based palliative care program uses an interdisciplinary care team to 
assist families in making end-of-life decisions. One hospital-based 
palliative care program, two hospice-based palliative care programs, 
and one palliative care program operated by a health care system 
provide bereavement support to family members. One health care system's 
palliative care program provides 24-hour nursing support for 
individuals in their homes, which assists caregivers, and another 
palliative care program operated by a hospice assists family members 
with coordinating in-home support services. Two hospital-based 
palliative care programs assist families with coordinating care upon an 
individual's discharge from the hospital. Officials from one hospice- 
based palliative care program and a palliative care program operated by 
a hospital both stated that they provide education about end-of-life 
care to family members. 

Programs Foster Communication among the Individuals, Families, and 
Program Staff: 

The programs we identified communicate frequently with individuals and 
their families regarding end-of-life issues. Representatives of the 
PACE, WPP, and palliative care providers and ALTCS officials we 
interviewed stated that they work with individuals and their families 
to develop a plan of care that reflects each individual's choices. For 
example, a representative of a PACE provider described how the 
interdisciplinary care team fosters communication with the individual 
about what type of care he or she wants to receive at the end of life, 
including pain and symptom management. Representatives of a provider of 
both PACE and WPP described how the interdisciplinary care team 
establishes goals with the individual and includes a physician and 
social worker to facilitate discussions involving end-of-life issues. A 
hospital-based palliative care program's interdisciplinary care team 
holds meetings with family members to discuss an individual's health 
status, prognosis, and end-of-life wishes, and another palliative care 
program has discharge coordinators follow up with individuals for as 
long as services are required. An ALTCS official stated that case 
managers discuss with beneficiaries what their needs are and what care 
they want to receive. Representatives of palliative care, PACE, and WPP 
providers informed us that they develop close, trusting relationships 
with individuals through their frequent communication to facilitate 
discussions about end-of-life care. 

Representatives of PACE, WPP, and palliative care providers we 
interviewed stated that communicating with individuals and their 
families about end-of-life issues earlier, rather than later, in the 
individual's illness makes it easier for both the individual and family 
to manage the decisions they face when the individual is closer to 
death. Representatives of a WPP provider stated that they have 
continuous conversations with individuals and families about plans for 
the end of life, and representatives of a PACE provider noted that they 
have these discussions early because such discussions become more 
challenging when someone is very near the end of life. Representatives 
of another WPP provider stated that they have monthly conversations 
with individuals about which life-saving measures they would like 
implemented as their condition worsens. A PACE provider's staff visits 
an individual nearing the end of life every other day to ensure that 
the individual's and family's needs are being met. Representatives of a 
palliative care provider described how they repeatedly discuss with 
individuals near the end of life the availability of other services 
such as hospice. 

Programs we identified use a variety of tools to foster communication 
among the members of the care team concerning individuals' needs as 
they near the end of life. Staff members of a provider of both PACE and 
WPP use a checklist to identify changes in an individual's condition. 
The checklist is completed at an individual's periodic review or 
whenever there is a change in health status and helps inform the care 
team about the need to discuss end-of-life planning with the 
individual. Representatives of providers described the benefits of 
electronic medical records in promoting communication among members of 
the care team. Representatives of a PACE provider and a palliative care 
program stated that creating an electronic medical record accessible to 
all members of the care team facilitates communication among the team 
regarding the condition of each beneficiary and increases the quality 
of care. A palliative care provider distributed laptop computers and 
handheld wireless devices to all clinical staff. Using these devices, 
clinical staff can both access and input information when they visit an 
individual's home, which keeps all staff who interact with the 
individual informed. Another palliative care provider shares 
clinicians' notes and correspondence electronically, which enhances 
communication. 

Representatives of a hospice-based palliative care provider in Oregon 
stated that the physicians they work with are more comfortable 
discussing end-of-life issues with their patients since the 1997 
enactment in Oregon of the Death with Dignity Act, which focused 
attention in the state on end-of-life care and the options available to 
individuals. Representatives of a palliative care program operated by a 
health care system we interviewed stated that passage of this act 
helped create an environment in Oregon where end-of-life issues are 
discussed more openly. 

Programs Initiate and Encourage Advance Care Planning: 

The WPP, PACE, and palliative care providers initiate or encourage 
advance care planning to assist individuals with planning for the end 
of life, making decisions about future medical care, and sharing 
information with family members. Representatives of all the PACE 
providers stated that they assist individuals with advance care 
planning tasks, such as completing advance directives and identifying 
health care proxies, that is, those who can make health care decisions 
on behalf of the individuals. Representatives of a provider of PACE and 
WPP stated that each individual begins the advance care planning 
process as soon as he or she is admitted to the program. This 
provider's staff members work with individuals to identify health care 
proxies and persuade individuals to communicate their decisions to 
family members. Representatives of a WPP provider stated that the staff 
have monthly conversations with individuals about their end-of-life 
choices, such as do-not-resuscitate orders. Representatives of another 
WPP provider stated that the care team encourages individuals and their 
families to plan for the end of life, and representatives of a provider 
of both PACE and WPP discuss with individuals all the medical services 
and interventions they wish to receive. 

Officials of palliative care programs stated that they offer assistance 
to individuals enrolled in their programs in completing advance 
directives and informing their families of any decisions they have made 
about their end-of-life care. One palliative care program operated by a 
hospice assists individuals with completing advance directives and 
informing family members of their decisions for the end of life. 
Palliative care programs operated by hospitals assist individuals with 
advance care planning tasks such as completing advance directives and 
making medical decisions. 

Representatives of a PACE provider in Oregon stated that they use 
Physician Orders for Life-Sustaining Treatment (POLST) forms to assist 
all individuals in their program with advance care planning.[Footnote 
17] The POLST form is a physician's order that communicates which 
medical interventions should be performed in the event of a health 
emergency. Similar to other advance directives, the POLST form allows 
individuals to document their choices regarding the use of life- 
sustaining procedures; a representative in Oregon stated that, unlike 
other advance directives, POLST forms are physician orders, which are 
more effective at communicating an individual's preferences to 
providers, particularly when the individual is transferred across 
health care settings. A representative of an Oregon PACE provider 
stated that the POLST form makes an individual's wishes clear and, 
because it is in the form of a physician's order, legally protects 
medical personnel, including emergency medical technicians, when they 
carry out an individual's documented choices during an emergency. 

Providers Find Challenges to Delivering Certain Key Components of End- 
of-Life Care: 

Representatives of providers we interviewed described challenges they 
encounter to delivering some of the key components of end-of-life care. 
They described difficulties delivering supportive services and family 
and caregiver support to rural residents because of travel distances, 
fewer community-based service options, and an inability to hire 
adequate numbers of staff in rural areas. Representatives of providers 
also stated that they believe physician training and practices can 
inhibit the provision of pain and symptom management and advance care 
planning to individuals nearing the end of life. 

Providers Encounter Challenges Delivering Supportive Services and 
Family and Caregiver Support to Rural Residents: 

Representatives of providers we interviewed described difficulties 
delivering supportive services and family and caregiver support to 
rural residents because of travel distances, lack of community-based 
services, and insufficient numbers of nursing and personal care staff 
in rural areas. Representatives of providers we interviewed stated that 
significant distances between residents in rural areas make it 
difficult to provide family and caregiver support, such as respite 
care, and supportive services, such as personal care services. The 
length of time it takes for personal care staff to travel between 
individuals in rural areas decreases the number of services the 
providers can deliver in a day. In addition, representatives of 
providers told us that increases in fuel costs have affected how many 
services they can provide. Representatives of providers we interviewed 
also described how unpaved roads and inclement weather can increase 
travel time or prevent travel entirely when serving rural residents. 
Representatives of one provider stated that the challenge of providing 
transportation in rural areas is one of the barriers that has prevented 
the provider's expansion into rural areas of the state. 

Representatives of providers we interviewed also cited the limited 
availability of certain services in rural areas as a challenge to 
serving individuals nearing the end of life who reside in those areas. 
Representatives of providers described difficulties in delivering 
supplies and medications to rural residents. For example, 
representatives of a hospice-based palliative care provider noted that 
the pharmacy service it contracts with to provide home delivery of 
medications cannot provide daily delivery in very rural areas and 
inclement weather may further delay deliveries. To address the problem, 
this provider has contracted with local rural pharmacies to provide 
emergency medication; however, in a two-county area, only one pharmacy 
is open 24 hours a day, making it difficult for individuals to access 
medications in an emergency. Representatives of another hospice-based 
palliative care provider and a WPP provider stated that they are 
sometimes unable to coordinate supportive services, such as meal 
delivery and personal care services, for individuals in rural areas 
because they are unable to locate providers of these services in these 
regions. In addition, representatives of providers noted that a lack of 
transit services makes it difficult to provide individuals living in 
rural areas with transportation to medical appointments or day centers. 

Representatives of providers stated that an insufficient number of 
nursing staff and personal care workers in rural areas makes it 
difficult to provide end-of-life care to those residents. For example, 
representatives of a provider of both PACE and WPP noted that it is 
often difficult to hire staff to work in more remote geographic areas, 
and they cited this as a barrier to expanding the provider's services 
into additional rural areas of the state. In addition, representatives 
of one hospice-based palliative care provider that serves a remote 
rural area stated that they have been unable to maintain adequate 
numbers of health care workers to provide services to its patients 
because such workers are increasingly choosing to relocate to urban 
areas. Representatives of another hospice-based palliative care 
provider in a rural region also stated that they have difficulty 
finding qualified staff to fill these positions. 

State officials we interviewed said that PACE is not a feasible option 
in rural areas because of the requirement that the providers operate an 
adult day center. Representatives of a provider that was formerly a 
PACE provider stated that it was difficult to remain financially 
solvent as a PACE provider in a rural community because there were not 
enough eligible individuals to support an adult day center model. This 
provider ended its participation in PACE because the community it 
served did not have enough eligible individuals to justify the expense 
of a day center. Also, in rural areas, the distance to the PACE adult 
day center from the residences of individuals enrolled in the program 
can be a challenge for the PACE program's transportation services. 

Providers Encounter Physician Training and Practices as Challenges to 
Providing Pain and Symptom Management and Advance Care Planning: 

Representatives of providers we interviewed described how they believe 
physician training and practices may present challenges to providing 
pain and symptom management and advance care planning to individuals 
nearing the end of life. Representatives of providers stated that 
physicians often do not receive adequate training in pain and symptom 
management. A physician we interviewed who is the director of a 
hospital-based palliative care program stated that he believes because 
physicians lack training to recognize the need for pain and symptom 
management, individuals nearing the end of life often have difficulty 
accessing such services.[Footnote 18] Representatives of other 
palliative care providers we interviewed agreed that lack of physician 
training in pain and symptom management is a challenge to the provision 
of pain and symptom management. Representatives of a hospital-based 
palliative care provider believe that many medical schools do not 
provide sufficient training for physicians in pain and symptom 
management. Representatives of a palliative care provider operated by a 
health care system stated that they believe most physicians are not 
trained to provide pain and symptom management to individuals nearing 
the end of life. A recent article in the New England Journal of 
Medicine (NEJM) has also noted that physicians receive little or no 
training in the use of medications for pain and symptom 
management.[Footnote 19] 

Representatives of providers we interviewed also cited physician 
practices as challenges to individuals receiving pain and symptom 
management services as they near the end of life. A representative of a 
hospital-based palliative care provider stated that some physicians are 
reluctant to refer individuals to the program so that they can receive 
pain and symptom management because these physicians do not understand 
or recognize the need for such care. Representatives of providers we 
interviewed also described how, in their experience, physicians may 
fail to address pain in a timely manner. A representative of a hospital-
based palliative care provider stated that patients' severe pain may go 
untreated while physicians, intent on finding the cause of the pain, 
order extensive diagnostic testing. Representatives of a palliative 
care program operated by a health care system stated that some 
physicians perform aggressive medical procedures on individuals nearing 
the end of life. These representatives stated that they believe some 
physicians view providing pain and symptom management as "giving up" on 
a patient. 

Representatives of providers we interviewed described how physicians 
often do not engage in advance care planning with individuals nearing 
the end of life. For example, representatives of a hospice-based 
palliative care provider stated that they believe physicians do not 
spend enough time talking with individuals about end-of-life care 
options such as hospice. As was recently reported in NEJM, physicians 
receive little training in the compassionate discussion of end-of-life 
issues.[Footnote 20] Furthermore, ALTCS officials stated that, in their 
experience, physicians often do not inform individuals about advance 
directives. Representatives of a hospice-based palliative care provider 
stated that physicians sometimes provide individuals with incorrect 
information about care options for the end of life. Representatives of 
a PACE provider told us that some physicians resist ending curative 
care to allow individuals nearing the end of life to receive only 
supportive care services, and the article published in NEJM reported 
that some physicians regard the death of patient as a professional 
failure.[Footnote 21] 

Agency Comments and Our Evaluation: 

In commenting on a draft of this report, CMS stated that the report is 
a useful description of a diverse set of provider types in very 
different settings, each of which provides useful services to persons 
coming to the end of life. CMS noted that the report is especially 
helpful as a time approaches when more Americans will be living with 
serious and eventually fatal chronic conditions. CMS also stated that 
it was useful that our report included individuals living with serious 
chronic conditions who might live for some years. However, CMS 
suggested that we avoid using the term terminal illness when referring 
to such individuals. We note that, in our draft report, we used this 
term only in the context of discussing the Medicare hospice benefit, 
which is, by definition, a benefit for individuals with terminal 
conditions. CMS also stated that we should mention other important 
components of end-of-life care including, for example, having the 
appropriate medical diagnosis and having all possible opportunities for 
a meaningful life. However, these issues are beyond the scope of our 
report. CMS also provided technical comments, which we incorporated 
where appropriate. CMS's comments are reprinted in appendix I. 

As agreed with your office, unless you publicly announce the contents 
of this report earlier, we plan no further distribution of it until 30 
days from its date. At that time, we will send copies of this report to 
the Administrator of CMS and to other interested parties. We will also 
make copies available to others upon request. In addition, this report 
will be available at no charge on the GAO Web site at [hyperlink, 
http://www.gao.gov]. 

If you or your staff have any questions about this report, please 
contact me at (202) 512-7114 or kingk@gao.gov. Contact points for our 
Offices of Congressional Relations and Public Affairs may be found on 
the last page of this report. GAO staff who made major contributions to 
this report are listed in appendix II. 

Sincerely yours, 

Signed by: 

Kathleen King: 

Director, Health Care: 

[End of section] 

Appendix I: Comments from the Centers for Medicare & Medicaid Services: 

Department Of Health & Human Services: 

Centers for Medicare & Medicaid Services: 
Office of the Administrator: 
Washington, DC 20201: 

Oct 12, 2007: 

To: Kathleen King: 
Director, Health Care: 
Government Accountability Office: 

From: Kerry Weems: 
Acting Administrator: 

Subject: Government Accountability Office's (GAO) Draft Report: "End-of-
Life Care: Key Components Provided by Programs in Four States" (GAO-08-
66): 

Thank you for the opportunity to review and comment on the above 
referenced subject draft report. We appreciate the GAO's interest in 
end-of-life care. The Centers for Medicare & Medicaid Services (CMS) 
is, as always, concerned about the quality of care provided. 

This report is useful in describing a diverse set of provider types in 
quite different settings, each of which is providing very useful 
service to persons coming to the end of life. It is quite helpful to 
have such a wide-ranging inquiry and description, especially as we 
approach a time when so many more Americans will be living with serious 
and eventually fatal conditions. CMS noted a few items that might 
readily be addressed in order to make the report even more clear. 

We find it very useful that the report includes persons living with 
serious chronic conditions who might live for some years. The Program 
of All-Inclusive Care for the Elderly (PACE) and other programs do not 
require a reliable expectation of dying soon that is inherent in the 
prognostic requirement for hospice. It would be good to make this point 
explicitly, and to avoid using the term "terminal illness" in order to 
avoid the sense that "dying" is a clearly definable phase of life. 
Usually explicit terms like "living with eventually fatal illness" or 
"coming to the end of life" are more informative to the reader. If the 
report explicitly used the trajectories model (e.g., from the IOM 
report, or from the June Milbank Quarterly article by Lynn et al), the 
uncertainty over the timing of death might make more sense to the 
reader. This could just be footnoted. 

We would note with approval that the current CMS work to provide 
patient assessments across provider types (the Continuity Assessment 
Record and Evaluation instrument and demonstration) would sustain and 
spread the good work that is mentioned on the middle 
Centers for Medicare & Medical Services of page 20, in which PACE and 
palliative care are finding that shared electronic records help quality 
of care. 

There are a few items of "context" that are so important in the care of 
all patients that they are probably not mentioned in site visits. 
Nevertheless, even for persons coming to the end of life, such 
conventionally important elements as these continue to be important: 
(I) having the appropriate medical diagnosis and treatment 
interventions; (2) counting on reliable services 24/7, across settings 
and time; and (3) having all possible opportunities for meaningful life 
(including personal relationships, spiritual experience, and productive 
work). Most likely, the programs visited, and the visitors, assumed 
that these were part of the package. However, they are well worth 
noticing, since otherwise it seems that care near the end of life might 
not have to prioritize these elements. This could be added in a short 
sentence or even a footnote, just to be clear that they still matter. 

This is a very useful project and well-reported and will be of help in 
our work to ensure quality and value in care for persons living with 
fatal illness. Thank you for the opportunity to review the draft. We 
appreciate the insights gained from the site visits and so helpfully 
documented.

[End of section] 

Appendix II: GAO Contact and Staff Acknowledgments: 

GAO Contact: 

Kathleen King, (202) 512-7114 or kingk@gao.gov: 

Acknowledgments: 

In addition to the contact named above, key contributors to this report 
were Nancy A. Edwards, Assistant Director; Beth Cameron Feldpush; 
Krister Friday; John Larsen; and Andrea E. Richardson. 

[End of section] 

Footnotes:  

[1] Medicare is the federal health care program for elderly and certain 
disabled individuals. 

[2] Medicaid is the joint federal-state program that provides health 
coverage for certain low-income individuals. Medicaid also pays for 
long-term care services, including nursing home care. 

[3] Medicare covers some skilled nursing care following a covered 
hospital stay. 

[4] Personal care services can be provided in the home and assist 
individuals with activities of daily living, such as bathing, dressing, 
or eating. 

[5] Testimony by Mark B. McClellan, MD, PhD, Administrator of CMS, 
before the Subcommittee on Health, House Committee on Energy and 
Commerce on April 27, 2005. 

[6] Curative care is care intended to overcome a disease and promote 
recovery. Under the hospice benefit, the beneficiary retains Medicare 
coverage for services to treat conditions other than the terminal 
illness or related conditions. 

[7] Institute of Medicine, Committee on Care at the End of Life, 
Approaching Death: Improving Care at the End of Life (Washington, D.C.: 
National Academy Press, 1997). 

[8] K. Lorenz et al., End-of-Life Care and Outcomes, Evidence Report/ 
Technology Assessment No. 110, AHRQ Publication No. 05-E004-2 
(Rockville, Md.: Agency for Healthcare Research and Quality, December 
2004). Prepared by the Southern California Evidence-based Practice 
Center, under contract No. 290-02-0003. 

[9] Low health care service utilization may result from use of 
coordinated care as well as from other factors such as underservice. 

[10] One of the WPP providers is also a PACE provider. 

[11] Four of these programs are administered by hospitals, two are 
administered by health care systems, and six are administered by 
hospices. The palliative care programs administered by these hospices 
are separate from the hospice program. 

[12] Although the PACE benefit package must include Medicare covered 
services, under Medicare regulations only PACE enrollees who are 
eligible for Medicare must be furnished Medicare services. 

[13] Respite care is services that provide temporary relief from tasks 
associated with caring for individuals who are ill. 

[14] Under section 1115 of the Social Security Act, CMS has authority 
to waive certain statutory requirements of the Medicaid program for 
states to engage in experimental, pilot, or demonstration projects that 
promote Medicaid program objectives. While many states choose to 
operate limited waiver programs for targeted populations, Arizona has 
chosen to operate its entire Medicaid program under a demonstration 
waiver. 

[15] Advance directives are documents that communicate an individual's 
wishes about end-of-life care (for example, preferences about the use 
of medical interventions such as a feeding tube or breathing machine) 
in the event that the individual is unable to communicate, and include 
living wills and medical powers of attorney. 

[16] An environmental adaptation is equipment or physical adaptations 
to an individual's home that enable the individual to have greater 
independence and functional access and ensure the health and safety of 
the individual. For example, installing equipment in a bathroom to make 
it more accessible for an individual with mobility impairments is an 
environmental adaptation. 

[17] The POLST form was developed by a multidisciplinary task force of 
health care professionals and representatives from governmental 
organizations and health care institutions in Oregon. 

[18] In September 2006, the American Board of Medical Specialties 
(ABMS) approved the development of Hospice and Palliative Medicine as a 
subspecialty. As a result of this approval, the first ABMS-recognized 
examinations for this subspecialty will likely be administered in 2008. 

[19] G. Gazelle, "Understanding Hospice - An Underutilized Option for 
Life's Final Chapter," The New England Journal of Medicine, vol. 357, 
no. 4 (2007), 321-324. 

[20] Gazelle, "Understanding Hospice - An Underutilized Option for 
Life's Final Chapter." 

[21] Gazelle, "Understanding Hospice - An Underutilized Option for 
Life's Final Chapter." 

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