Means To An End Fidelity Final

November 2002

A Vision for Better Care at the End of Life
Death and dying are not easy to deal with. Perhaps you or someone you love is facing an illness that cannot be
cured. Few of us are really ready for the hard choices that may have to be made at the end of life. It can be hard
for everyone involved—the dying person, their family and loved ones, and health care providers, too.
But there is a way to ease pain and make life better for people who are dying and for their loved ones. It is called
palliative care. Palliative care means taking care of the whole person—body, mind, spirit—heart and soul. It looks
at dying as something natural and personal. The goal of palliative care is that you have the best quality of life you
can have during this time.
Some health care providers—doctors, nurses, social workers, pharmacists, clergy and others—have learned
how to give this special kind of care. But all health care providers should know how to give good palliative care or
to help you ﬁnd someone who can.
FIVE PRINCIPLES OF PALLIATIVE CARE
The following Five Principles of Palliative Care describe what care can and should be like for everyone facing the
end of life. Some of these ideas may seem simple or just common sense. But all together they give a new and more
complete way to look at end-of-life care.
1. Palliative care respects the goals, likes and choices of the dying person. It . . .
• Respects your needs and wants as well as those of your family and other loved ones.
• Finds out from you who you want to help plan and give you care.
• Helps you understand your illness and what you can expect in the future.
• Helps you ﬁgure out what is important.
• Tries to meet your likes and dislikes: where you get health care, where you want to live and the kinds of
services you want.
• Helps you work together with your health care provider and health plan to solve problems.
2. Palliative care looks after the medical, emotional, social and spiritual needs of the dying person. It . . .
• Knows that dying is an important time for you and your family.
• Offers ways for you to be comfortable and ease pain and other physical discomfort.
• Helps you and your family make needed changes if the illness gets worse.
• Makes sure you are not alone.
• Understands there may be difﬁculties, fears and painful feelings.
• Gives you the chance to say and do what matters most to you.
• Helps you look back on your life and make peace, even giving you a chance to grow.
3. Palliative care supports the needs of the family members. It . . .
• Understands that families and loved ones need help, too.
• Offers support services to family caregivers, such as time off for rest, and advice and support by telephone.
• Knows that caregiving may put some family members at risk of getting sick themselves. It plans for their
special needs.
• Finds ways for family members to cope with the costs of caregiving, like loss of income, and other expenses.
• Helps family and loved ones as they grieve.
continued on inside back cover

November 2002

© 2002 by Last Acts®, a national coalition to improve care and caring
near the end of life. As this is the ﬁrst comprehensive report ever
published on the conditions of dying in America today, Last Acts
encourages everyone interested to reproduce and distribute this
material as widely as possible. It is also available for downloading
from the Last Acts’ Web site at www.lastacts.org.

ACKNOWLEDGMENTS
The development of this Last Acts report was an inspiring group project. Many
people contributed to this effort, which we hope will spark public discussion
about the state of dying in America today. From the ﬁrst brainstorming session
held by the Last Acts Committee Conveners to the report’s publication, drafts
found their way into over 40 pairs of capable hands. We are grateful to all of
the conveners and other experts who guided us so carefully. Special thanks to
Jim Towey for “birthing” the idea that led to the report and his initial stew-
ardship of this project. In designing speciﬁc measures, we particularly beneﬁted
from the expertise of Ira Byock, M.D., Stephen Connor, Ph.D., Elliott S. Fisher,
M.D., David Joranson, M.S.S.W., Diane Meier, M.D., Christina Puchalski, M.D.,
Charles Sabatino, J.D., Joan Teno, M.D., and John Wennberg, M.D.
Carolen Collins and the Midwest Bioethics Center were instrumental in de-
veloping our “Momentum for Change” section. Peg Metzger developed and
wrote the Action Guide which serves as a companion piece to this report. The
“Islands of Hope” features describe some of the past winners of the Ameri-
can Hospital Association’s Circle of Life Award, www.hospitalconnect.com/aha/
awards-events/circle_of_life/index.html. Many thanks also to Jean and Dick
Atcheson and Margaret Trejo, our editorial and design experts, who brought an
extraordinary amount of energy, creativity and dedication to this process.
As always, the Last Acts team members provided helpful suggestions and
quick “turn around” when needed—especially Mollie Katz, Karen Long, Jane
Koppelman, and our program ofﬁcer at The Robert Wood Johnson Foundation,
Vicki Weisfeld. Sheila Gaskins’ unﬂappable good cheer helped us through many
a draft. And, last but not least, there would be no report without the tireless and
continuous efforts of Tricia Nitsche, our Last Acts Research Associate.
How we die says a lot about our society. We hope this report fuels a much larger
discussion of why and how America must grapple with improving the care of
people nearing the end of their lives.
Karen Orloff Kaplan
Judith R. Peres
Director
Deputy Director
Last Acts
Last Acts
(iii)

CONTENTS
Introduction
1
Sparking a Public Discussion
3
How Last Acts Prepared This Report
5
State Report Card Measures
7
1 State Advance Directive Policies
9
Do state policies support good advance care planning?
9
How we rated state advance directive policies
10
MAP Quality of state advance directive laws, 2002
11
CASE STUDY Planning for care makes the end of life easier
12
2 Location of Death
13
What proportion of the state’s deaths occur at home?
13
How we rated the states regarding proportion of at-home deaths
13
MAP Deaths at home, 1997
14
CASE STUDY A family-centered death at home
15
3 Hospice Use
16
Is hospice care widely used in the state?
16
How we rated the use of hospice care
17
MAP People over 65 who used hospice in the last year of life, 2000 18
MAP Median number of days in hospice, 2001
19
CASE STUDY Hospice care allows comfort and closure
20
4 Hospital End-of-Life Care Services
21
Do hospitals in the state offer pain and palliative care services?
21
How we rated the availability of end-of-life care services in hospitals
22
MAP Hospitals reporting pain management programs, 2000
23
MAP Hospitals reporting hospice programs, 2000
24
MAP Hospitals reporting palliative care programs, 2000
25
CASE STUDY An integrated hospital-based palliative care program
26
(v)

5 Care in ICUs at the End of Life
27
How many elderly people spend a week or more in intensive
care units during the last six months of life, meaning that they
may have received overaggressive care?
27
How we rated each state’s proportion of ICU deaths
28
MAP People over 65 with 7 or more ICU days during
the last 6 months of life, 2000
29
CASE STUDY A difﬁcult death in intensive care
30
6 Pain Among Nursing Home Residents
31
How well do the state’s nursing homes manage their residents’ pain?
31
How we rated each state on how well its nursing homes manage
patients’ pain
31
MAP Nursing home residents in persistent pain, 1999
32
CASE STUDY Unnoticed pain, unnecessary suffering
33
7 State Pain Policies
34
Do state policies encourage good pain control?
34
How we rated state pain policies
35
MAP Strength of state pain policies, 2001
36
CASE STUDY Undertreatment of pain sparks legislative change
37
8 Palliative Care-Certiﬁed Physicians and Nurses
38
Does the state have enough physicians and nurses who are
trained and certiﬁed in palliative care?
38
How we rated the supply of palliative care-certiﬁed physicians
and nurses
40
MAP Percentage of general primary care and primary care
subspecialty physicians who are certiﬁed in palliative
medicine, 2000
41
MAP Percentage of full-time-equivalent nurses (estimated)
who are certiﬁed in palliative care, 2000
42
CASE STUDY Doctors fear end-of-life decisions, too
43
Recommendations for Action
45
Actions for Public Policymakers
48
Actions for Health Care Leaders
49
Actions for Everyone
50
(vi)

Momentum for Change
51
Statewide End-of-Life Care Initiatives
55
Appendix
67
Methodology
69
1 State Advance Directive Policies
70
CHART Quality of state advance directive laws, 2002
70
2 Location of Death
72
CHART Deaths at home, in a hospital, and in a nursing home,
by state, 1997
72
3 Hospice Use
74
CHART People over 65 who used hospice in the last year of life,
by state, 2000
74
CHART Median number of days in hospice, by state, 2001
75
4 Hospital End-of-Life Care Services
76
CHART Hospitals reporting pain management programs, hospice
programs, and palliative care programs, by state, 2000
76
5 Care in ICUs at the End of Life
78
CHART People over 65 with 7 or more ICU days during the last
6 months of life, by state, 2000
78
6 Pain Among Nursing Home Residents
79
CHART Nursing home residents in persistent pain, by state, 1999
79
7 State Pain Policies
80
CHART Strength of state pain policies, 2001
80
8 Palliative Care-Certiﬁed Physicians and Nurses
82
CHART Percentage of general primary care and primary care
subspecialty physicians who are certiﬁed in palliative
medicine, 2000
82
CHART Percentage of full-time-equivalent nurses (estimated)
who are certiﬁed in palliative care, 2000
84
Conveners, Last Acts Committees
86
Other Advisers
87
Endnotes
89
(vii)

Introduction
During the past century, we in the United States have seen signiﬁcant
changes in the way we experience illness and death. A hundred years ago,
people usually died from an injury or sudden illness. Farm work, factory
work—even childbirth—were risky. Today, with medical and other advances,
people live longer and can expect to live several years with an illness that may
eventually kill them. Ultimately, many will reach a point where medical tech-
nology may be able to keep them alive but can neither restore their health nor
even improve their condition. In truth, more treatment may be merely pro-
longing dying. At that point, patients and families face difﬁcult choices about
the kind of care they want.
While opinion polls reveal that most Americans would prefer to die at home,
free from pain and with their loved ones, the reality is
vastly different. Americans often die alone in hospitals or
nursing homes, in pain and attached to life support
machines they may not want. And this happens despite
modern medicine’s ability to ease most pain, the existence
of good models of delivering supportive care, and the
increasing availability of excellent end-of-life care through
hospice and palliative care programs. All these services, however, are
underused—in large part because in our death-denying culture, many
Americans don’t want to discuss death and dying, or because many Americans
don’t know about these options for good end-of-life care and thus don’t ask
for them.
The last decade saw an evolution in the way Americans think about death
and dying. The debate over physician-assisted suicide, coupled with pioneer-
ing studies about patterns of end-of-life care, launched a national dialogue
about how we die. In November 1995, the Journal of the American Medical
Association published initial results from SUPPORT (Study to Understand
Prognoses and Preferences for Outcomes and Risks of Treatments), the largest,

most widely publicized research project examining end-of-life care in the
United States to date.1 SUPPORT documented what the public had suspected:
Dying in America was unnecessarily painful and isolating, physicians did not
understand patients’ wishes, and it was costly. In 1997, an Institute of Medicine
report, Approaching Death in America: Improving Care at the End of Life, under-
scored that “people have come to both fear a technologically over-treated and
protracted death and dread the prospect of abandonment and untreated
physical and emotional stress.”2
On the heels of SUPPORT, The Robert Wood Johnson Foundation launched
Last Acts, a multiyear, multimillion-dollar national campaign to promote
FAST FACT
improvements in care and caring near the end of life. Since 1996, Last Acts has
Approximately
been communicating with policymakers, groups representing health care pro-
2.5 million people die
fessionals, and consumer organizations about the need to make sure that se-
each year—55,000 of them
riously ill and dying patients receive the best care possible and have the fullest
are children and
possible understanding of the kinds of care available.
80 percent of them are
Medicare beneﬁciaries.
The need for serious efforts to ﬁgure out how best to care for dying people and
their loved ones is becoming more urgent every day. A large aging population,
increases in the incidence of chronic disease, and the reduced availability of
paid and unpaid caregivers, among other factors, must soon focus more at-
tention on ways to improve the care we offer individuals nearing the end of
their lives.
Experts—and the public—generally agree that the best end-of-life care
treats the whole person—body, mind and spirit. This is called palliative care.
Palliative care works aggressively to relieve pain and other physical symp-
toms; it also offers emotional and spiritual support to the patient and family,
while respecting their culture and traditions. Care for people near the end of life
is largely ﬁnanced and delivered through Medicare and Medicaid—programs
that were not designed to provide comprehensive palliative care.
Palliative care is often contrasted with curative care, but the lines between cure
and the relief of suffering are blurry. In fact, palliative care may be needed for
many years after diagnosis of a serious illness and not just near the end of life.
Palliative care can complement other therapies and can be delivered in many
settings—hospitals, nursing homes, other long-term-care facilities and
hospices. Although palliative care has broad applications, this report focuses on
palliative care near the end of life.
(2)

In 1997, Last Acts published its Precepts of Palliative Care, which describe for
health professionals ﬁve areas that are key to delivering high-quality end-of-life
care.3 Brieﬂy stated, these core areas are:
■
Respecting patient goals, preferences and choices.
■
Providing comprehensive caring.
■
Utilizing the strengths of interdisciplinary resources.
■
Acknowledging and addressing caregiver concerns.
■
Building systems and mechanisms of support.
A Vision for Better Care at the End of Life, a version of the Precepts for the public,
appears as the endpapers of this report.
SPARKING A PUBLIC DISCUSSION
In this report, Last Acts rates each of the 50 states and the District of Colum-
bia on eight criteria as a basis for assessing the state of end-of-life care in this
country. Despite many recent improvements in end-of-life care and greater
public awareness about it, this report shows that Americans at best have no
better than a fair chance of ﬁnding good care for their loved ones or for them-
selves when facing a life-threatening illness. In most states, too few patients are
accessing hospice and palliative care services, there are too few professionals
trained in pain management and palliative care, and there are too many patients
dying in hospitals and nursing homes—in pain—rather than at home with
their families.
Our ratings suggest a statistical portrait of access to some facets of good end-of-
life care—they are far from a perfect measuring tool. For several important
aspects of end-of-life care—such as whether emotional or
spiritual needs are addressed or awareness of the dif-
ferences in the kind of care desired by people from dif-
ferent cultural backgrounds—state-by-state data simply do
not exist. (Some notes on the importance of spirituality
and cultural issues in health outcomes and health care
decision-making are presented on pages 4 and 5.) All the data need some ex-
planation about their strengths and weaknesses and what they are really telling
us. We hope that this report will stimulate efforts to improve the availability and
quality of the data needed to understand end-of-life care in this country, but
meanwhile we hope to spark a public discussion that cannot wait until more
reﬁned data are developed.
(3)

Key
Issues
SPIRITUALITY
religious traditions, a deep regard for nature, connections
Over time Western medicine has separated physical care
to family, nature, art and music, or in some other way
from patients’ spiritual needs. Increasingly, however,
that is uniquely personal.8,9,10,11
there is recognition of the importance of spirituality in the
Many hospitals recognize the role of spiritual caring
care of dying people.4,5 Numerous studies have been
in their provisions for chaplains and religious services and
done that support the important role spirituality plays in
the inclusion of chaplains or other religious advisers on
patient care.6,7 When medicine confronts life-limiting
hospital palliative care teams.12 Hospice has long rec-
illness, in particular, and when cure becomes less likely, it
ognized the critical importance of involving pastoral pro-
is of paramount importance to help patients cope with
fessionals on interdisciplinary teams and always makes
their suffering and eventual dying.
this service part of the total package of care available to
As people near death they often wrestle with
all patients and their families.
questions such as “Why me?” or “What will happen to
Increasingly, medical schools are realizing that ad-
me?” or “What has my life meant?” These are inherently
dressing spirituality can be an important and useful part of
issues of the spirit, not only of biology or chemistry.
patient care and doctors’ own well-being. More than 70
Physicians and other health care providers increasingly
medical schools now include some teaching about spiri-
recognize that good care of dying people is as much or
tuality and medicine.13 While some doctors may hesitate to
more about these questions as it is about the relief of pain
tread on spiritual ground, it seems that Americans want
and other symptoms. Spirituality is an expression of how
their doctors to ask them about spiritual concerns. In 1996,
people relate to a larger whole—something greater than
USA Today reported that 63 percent of people surveyed
themselves—and how they ﬁnd meaning in the midst of
believe it is good for doctors to talk to patients about
their suffering. A person’s purpose and meaning in life
spiritual beliefs.14 The American College of Physicians has
can be expressed in different ways—through speciﬁc
convened two consensus conferences, which concluded
In a country where so much research is conducted it is remarkable that this
should be the ﬁrst attempt to offer a comprehensive report on a situation that
ought to interest every single American. Its importance is as obvious as its
urgency. Our elderly population is increasing, and as our family members and
MORE INFO
friends grow ill and die, the experience becomes vivid to every one of us. What
See “Spirituality and End-of-
do we know about death in this country? What are our expectations for our
Life Care” in Innovations in
own care at the end of our lives? Or would we rather not think about it?
End-of-Life Care, 1(6),
Nov.–Dec., 1999, and
“Palliative Care in African
Last Acts offers this report to help every interested American start to under-
American Communities” in
stand how disturbing the current situation is and, at the same time, what the
Innovations in End-of-Life
elements of good end-of-life care are. It is a reminder that thinking ahead about
Care, 3(5), Sept.–Oct., 2001,
the kind of care we want for ourselves and our families, and where we might
at www2.edc.org/lastacts/
turn to ﬁnd it, is critical in averting crises when an incurable illness strikes.
Thinking ahead is essential in making the end of life as peaceful as possible.
(4)

Key
Issues
that physicians are obligated to address the spiritual and
In recent years, the diversity of our population’s pref-
existential suffering of their patients.15,16 A spiritual as-
erences with respect to end-of-life care has received some
sessment tool was developed that many medical schools
long-overdue attention. Results of one study of Caucasian,
and hospitals are now using routinely.17
African, Korean and Mexican Americans suggest that eth-
In another recent survey, 45 percent of respondents
nicity is strongly related to attitudes toward and personal
indicated that spiritual or religious beliefs would inﬂuence
wishes for the use of life support.22 Another study found
their treatment decisions if they were seriously ill.18 A 1997
that African Americans are consistently more likely than
Gallup survey, which addressed needs people would have
whites to prefer aggressive treatment during the terminal
at the end of life, showed that the top concern of the
phase of an illness. African Americans are one-third as
American public was having their spiritual needs ad-
likely as Caucasians to have living wills and one-ﬁfth as
dressed.19 In fact, seriously ill patients and bereaved family
likely to have Do Not Resuscitate (DNR) orders. Hispanics
members have rated attention to spirituality among their
are about one-third as likely as Caucasians to have DNR
most important concerns at the end of life.20,21
orders and are equally likely to have living wills.23 Even
though certain beliefs and practices may be more
DIVERSITY
common in particular ethnic or cultural groups, we cannot
People from different backgrounds have different beliefs
presuppose another individual’s beliefs, desires or motives
about and approaches to almost any important issue. The
based on superﬁcial knowledge or stereotype.
challenges and dilemmas that surround serious illness
The Diversity Committee has published a
Last Acts
and death are no exception. Increasingly, doctors, nurses
Statement on Diversity and End-of-Life Care, which is ac-
and counselors are being urged to identify and respect
companied by several case studies that depict the kinds of
the unique needs, wishes and views about end-of-life
issues that arise when patients from various backgrounds
issues of dying patients and their families.
deal with end-of-life decisions.24
HOW LAST ACTS
LAST ACTS PREPARED THIS REPORT
In May 2001, Last Acts brought together a group of national experts in
palliative care, spirituality, pain management and the U.S. health care system.
(Please see page 86 for a complete listing of the conveners’ names and
afﬁliations.) They were there to produce something that did not exist—a way to
describe the status of end-of-life care in every state. Much discussion of possible
means of measuring the state of care eventually focused on eight
important questions:
1 Do state policies support good advance care planning?
2 What proportion of the state’s deaths occur at home?
3 Is hospice care widely used in the state?
4 Do hospitals in the state offer pain and palliative care services?
5 How many elderly people spend a week or more in intensive care units
during the last six months of life, meaning that they may have received over-
aggressive care?
(5)

6 How well do the state’s nursing homes manage their residents’ pain?
7 Do state policies encourage good pain control?
8 Does the state have enough physicians and nurses who are trained and cer-
tiﬁed in palliative care?
The answers to these questions can be found in the State Report Card
Measures—the heart of this report. We describe each measure in turn, say why
it is important and how it was developed and show a map indicating state per-
formance—A, B, C, D or E. (A much more detailed description of the data
behind each measure, by state, is in the Appendix.) With each measure, we
include a brief case study illustrating how this measure affects real people, in
real situations, every day. We follow this section with a set of Recommendations
for Action.
Although the State Report Card Measures are discouraging and show tremendous
shortfalls in care, there is good news, too. In a later section of this report, titled
Momentum for Change, we describe how state coalitions
composed of diverse professional and consumer groups have
recognized the serious problems with care of the dying in
their states and are working actively to try to ﬁx them.
Already some of their efforts have resulted in substantial
progress, described on pages 53–66. And, recently, Last Acts
established a new project, called Rallying Points, to help some 350 local
coalitions work to improve end-of-life care at the community level. Details
about where these coalitions are located and what they are doing can be found
on the project’s Web site, www.rallyingpoints.org.
(6)

State Report Card Measures

See the Appendix, pages 67–85,
for the actual data, charted by state,
on which these measures are based.

State Advance Directive Policies
1
? Do state policies support good advance care planning?
People use advance care planning documents (living wills and medical powers
of attorney) in an attempt to determine the type of care they want if they cannot
speak for themselves. These documents explain the extent to which people
want life-sustaining medical treatments, and appoint someone to make those
decisions for them if they cannot. Experts and consumers alike believe that
honoring a terminally ill patient’s treatment preferences is a critical element of
high-quality end-of-life care.25
Although advance directive policies are determined primarily at the state level,
in 1991, Congress enacted the Patient Self-Determination Act (PSDA). This act
requires that all health care facilities receiving Medicare or Medicaid re-
Advance Directive
Advance Directive is a
imbursements must inform patients of their right to make choices about the
general term used to
describe two types of
treatment they receive and to prepare advance directives.
documents—living wills and
medical powers of attorney.
As an additional guide to patients’ treatment wishes, most health care facilities,
Living wills (sometimes
including nursing homes and rehabilitation centers, are required to have a Do
called medical directives)
Not Resuscitate (DNR) order policy in place if they wish to be accredited by the
are written instructions for
Joint Commission on Accreditation of Healthcare Organizations (JCAHO).
care in the event that a
person is not able to make
There are also some people living at home for whom resuscitation is not ap-
medical decisions for him-
propriate or is unwanted. In order to protect them from resuscitation efforts
or herself. Currently, 47
(which are mandatory if emergency personnel are called), many states have
states and the District of
authorized “non-hospital” (or out-of-hospital) DNR orders. These are orders
Columbia have laws
signed by a physician that can be presented to emergency medical personnel,
authorizing living wills.
which allow them not to begin resuscitation. Currently 44 states and the District
Massachusetts, Michigan
of Columbia have authorized the use of non-hospital DNR orders.
and New York do not.26
Despite the PSDA’s requirement that health care providers tell patients about
advance directives, surprisingly few Americans actually complete these doc-
uments. A study published in 2002 estimated the overall prevalence of advance
directives to be 15 to 20 percent in the general population.27 Rates of com-
pletion are also low in the populations that most need them. A 2002 study of
nursing home residents found that only 20 percent of them had living wills, and
48 percent had DNR orders.28
(9)

State Advance Directive Policies
1
✔ How we rated state advance directive policies
For this report, we looked at the extent to which ﬁve aspects of state policies
conform to key elements of the Uniform Health Care Decisions Act,29 plus one
A medical power of
medical power of
aspect reﬂecting the existence of state DNR order policy. Except where
attorney (sometimes called
indicated, the sources of these data are the legislative tracking charts pro-
a health care power of
duced by the American Bar Association’s Commission on Law and Aging.30 Ac-
attorney) is a document
that appoints a particular
cording to the Uniform Act, states should:
person (health care proxy
■
Recommend a single, comprehensive advance directive, which reduces con-
or health care agent) to
fusion (1 point).
make health care decisions
■
for a patient who is unable
Avoid mandatory forms or language for medical powers of attorney or
to do so for him- or herself
combined living wills/medical powers of attorney, giving residents the
(not just during a terminal
freedom to express their wishes in their own way (1 point).
illness). All 50 states and
■
Give precedence to the agent’s authority or most recent directive over the
the District of Columbia
living will, recognizing that an agent has the advantage of being able to
have laws recognizing
weigh all the facts and medical opinions in light of the patient’s wishes at the
health care powers of
time a decision needs to be made (1⁄2 point).31
attorney. Currently 28
■
states and the District of
Authorize default surrogates (typically next of kin) to make health care
Columbia specify the types
decisions, including decisions about life support if the patient has not
of decisions that health
named someone (1 point).
care proxies can make.
■
Include “close friend” in the list of permissible default surrogates, recog-
nizing that “family” in today’s world often extends beyond the nuclear family
(1⁄2 point).
■
Have a statewide (non-hospital) DNR order protocol for Emergency Medical
Service personnel, to ensure that the wishes of terminally ill patients in the
community can be followed by EMS personnel (1 point).32
This report placed states into ﬁve groups according to their overall score, which
could range from 0.0 to 5.0. States receiving an A scored 4.5 to 5.0 overall,
those receiving a B scored 3.5 to 4.0, and so on.
Fairview Health Services • Minneapolis, Minnesota
Fairview Health Services includes seven hospitals, three physician networks, 75 clinics, three
HOPE
nursing homes, and 14 senior residences. All patients are asked upon admission who
OF
should make decisions for them if they become incapacitated. At one of Fairview’s rural sites,
advance directives and care plans are reviewed whenever patients have a history and physical
AND
exam. Patients keep the original form, as they go from setting to setting, and a copy goes into
ISL
each chart.
(10)

State Advance Directive Policies
1
Quality of state advance directive laws, 2002
Range 0.5 – 5.0
4.5–5.0
3.5–4.0
2.5–3.0
1.5–2.0
0.5–1.0
A
B
C
D
E
A Delaware
B Alabama
C Arkansas
D Indiana
E Alaska
Florida
Arizona
California
Nebraska
Kansas
Hawaii
Colorado
District of Columbia
New Hampshire
Pennsylvania
Maine
Connecticut
Idaho
North Carolina
Vermont
Maryland
Georgia
Iowa
Ohio
Kentucky
Oklahoma
Michigan
Illinois
Louisiana
Nevada
New Mexico
Massachusetts
Missouri
South Carolina
Minnesota
Montana
Tennessee
Mississippi
New Jersey
Wisconsin
New York
North Dakota
Oregon
Rhode Island
Virginia
South Dakota
West Virginia
Texas
Utah
Washington
Wyoming
Source: American Bar Association, Commission on Law and Aging. State Health Decisions Legislative Update, 2002, www.abanet.org;
Sabatino, CP. “The Legal and Functional Status of the Medical Proxy: Suggestions for Statutory Reform.” Journal of Law, Medicine &
Ethics, 27: 552–68, 1999; Sabatino, CP, “Survey of State EMS-DNR Laws and Protocols.” Journal of Law, Medicine & Ethics, 27:
(11)
297–315, 1999.

State Advance Directive Policies
1
C A S E S T U D Y
P l a n n i n g f o r c a r e m a k e s
t h e e n d o f l i f e e a s i e r
In 1998, when Margaret Lazarz was 80, she sat down with trusted rel-
atives to orchestrate a critical stage in her life—her ﬁnal medical care. With
two cardiac surgeries and a pacemaker behind her, and congestive heart
failure a near certainty, she knew that a time would come, not far in the
future, when she would need her loved ones to act on her behalf. She created
a power of attorney for health care, designating her sister-in-law, Rosella
Lazarz, and her niece, Janet Aide, as her representatives in making decisions.
If her breathing and heart stopped, she did not want doctors to attempt
cardiopulmonary resuscitation (CPR) unless she had a good chance of
survival. Her wishes were put down in writing.
Some time later, Margaret was taken to the hospital because her poorly
functioning heart allowed her lungs to ﬁll with ﬂuid and she was unable to
breathe. There she was asked whether she wanted to be resuscitated if her
symptoms advanced further. Margaret’s personal doctor was met with a list of
questions from the family representatives: How bad was her heart? What
could she expect for the future? If her breathing stopped, would CPR be suc-
cessful? Would her treatment be top quality if she did not choose CPR? Could
a plan be made to ensure she was comfortable, no matter what happened?
Gently, the doctor explained to Margaret that CPR would not help extend
her life with any quality, if it worked at all. She then agreed to let her written
directive stand. In just a few weeks, her breathing and heart began to fail
again. Hospice helped make her more comfortable, and she died the fol-
lowing day. Her advance directive, well understood by her family, had been
respected.
“It was a big relief to have a plan,” said Rosella Lazarz, who is conﬁdent
that she abided by her sister-in-law’s last wishes.
Adapted from Partnership for Caring
(12)

Location of Death
2
? What proportion of the state’s deaths occur at home?
About 50 percent of Americans 65 and older die in hospitals, often after stays
in intensive care units, visits to multiple physicians in the months before death,
and expensive life-prolonging treatments. Another 20 to 25 percent die in
nursing homes, and this proportion is growing. Only 24.9 percent of Americans
die at home, although more than 70 percent say that is their wish.33
Certainly, not all people with life-threatening illnesses can die at home.
Sometimes a hospital or nursing home is the most appro-
priate place for people whose conditions require advanced
medical technology or when home care is difﬁcult or not
desired. Still, most patients who die in hospitals and
nursing homes would not require institutional care if
support were available for them at home.34 That, coupled
with the large proportion of people who want to die at
home, suggests that the 24.9 percent rate of home deaths easily could be
higher.
Where people die—and what kind of end-of-life care they receive—may be less
a reﬂection of their wishes and more inﬂuenced by local doctors’ practice
habits, the availability of hospice services and the proportion of open hospital
beds in the community.35 People use hospice services earlier in their course of
illness if they live in areas that have more hospital beds, more hospice services
and more general practitioners.36 They are less likely to die in hospitals if they
live in areas where nursing homes and hospices are more available. Patients’
preferences often are not the deciding factor in where they die.37
✔
How we rated the states regarding proportion of
at-home deaths
We gave states one of ﬁve grades, with the top grade reserved for states
where more than 60 percent of deaths occurred at home, a level below the ex-
pressed desire of more than 70 percent of Americans. No state receives an A on
the map on page 14.
(13)

Location of Death
2
Deaths at home, 1997
Range 14.7% – 35.8%
Mean 24.9%
> 60%
45 < 60%
30 < 45%
15 < 30%
0 < 15%
A
B
C
D
E
A —
B —
C Alaska
D Alabama
Maine
Pennsylvania
E District of
Idaho
Arizona
Maryland
Rhode Island
Columbia
New Mexico
Arkansas
Massachusetts
South Carolina
Nevada
California
Michigan
South Dakota
Oregon
Colorado
Minnesota
Tennessee
Utah
Connecticut
Mississippi
Texas
Washington
Delaware
Missouri
Vermont
Florida
Montana
Virginia
Georgia
Nebraska
West Virginia
Hawaii
New Hampshire
Wisconsin
Illinois
New Jersey
Wyoming
Indiana
New York
Iowa
North Carolina
Kansas
North Dakota
Kentucky
Ohio
Louisiana
Oklahoma
Source: Brown University Center for Gerontology and Health Care Research, www.chcr.brown.edu/dying/forresearcherssod.htm.
(14)

Location of Death
2
C A S E S T U D Y
A f a m i l y - c e n t e r e d
d e a t h a t h o m e
For 11 years, Ruth Wolf waged a ﬁerce battle against cancer. At the age
of 58, she had gone through chemotherapy, attended cancer support groups,
researched new cancer treatments, challenged her oncologist’s decisions, and
endured both a double mastectomy and a bone marrow transplant. When the
cancer spread to her brain, she decided it was time to die.
Ruth wanted to exert as much control over the course of her death as she
had over her disease, and dying at home was paramount to that wish. With
the help of hospice, her two extremely supportive daughters and her husband,
she was able to do just that. Ruth had her hospital bed and oxygen tank
placed in her living room, so that her many friends would feel more com-
fortable visiting than if she were in her bedroom. “She wasn’t hiding,” recalled
her daughter, Dagny. A multitude of friends came through—friends from
childhood, from her college days, and from her cancer support group. “They
had time to talk with her,” Dagny said. “In fact, people would come and camp
out in our house.” For the two months before her death, the house was con-
stantly ﬁlled with the sounds of laughter, talking and ringing phones, just as
Ruth had wanted.
“Mom had collected dozens of scarves to cover her head while she was
in chemotherapy,” Dagny said. “She had us drape the scarves over the fur-
niture, and asked each visitor to take a scarf to have something to remember
her by. When they chose a scarf, she told a story that went along with how
she had bought that particular one. It’s tragic that she died so young, but if we
could all die like she did, we’d be fortunate. I take great pride in the fact that
we helped her have the death that she wanted, and that she was able to do it
at home.”
Adapted from an interview with Ruth Wolf’s daughter, Dagny
(15)

Hospice Use
3
? Is hospice care widely used in the state?
Hospice is a philosophy of care that considers the dying patient and family
as one unit and focuses on relieving symptoms (palliation) rather than at-
tempting to cure underlying disease. This kind of palliative care can be
provided wherever the patient calls home—a private residence, a nursing
home, assisted living or a hospice facility. The care is multifaceted, attending
not only to physical symptoms, but also to psychological, emotional and
spiritual needs. Support for family members continues after the patient’s
death—one-year bereavement services are a standard hospice beneﬁt.
Over the years, Americans have increasingly turned to hospice. Enrollment has
risen from about 1,000 per year in 1975, when hospice care was intro-
duced in the United States, to 700,000 in 2000.38 This increase in enrollment
was made possible in large part by congressional approval of hospice care as
a separate Medicare beneﬁt in 1982. Since Medicare covers almost every
American 65 and older, and since 75 percent of Americans who die are in that
age group, hospice then became a covered beneﬁt for the vast majority of dying
Americans. To qualify, a patient must have a life expectancy of six months or
less and must forgo curative treatments. Medicaid also pays for care near the
end of life, largely through funding of long-term-care services for low-
income people. Medicaid’s role in paying for hospice is small and follows
Medicare’s rules.
Many end-of-life care experts, as well as patients and families, consider hospice
to be the “gold standard” in end-of-life care—in terms of both quality and cost-
effectiveness.39 Most people equate end-of-life palliative care with hospice care,
but it can also be effectively delivered in hospitals, nursing homes and other
long-term-care facilities. Family members consistently report the quality of
hospice care to be excellent.40 Compared to traditional care for the terminally
ill, hospice care and the use of advance directives such as living wills and
medical powers of attorney could save up to 10 percent of the cost of care in a
Hospice of the Florida Suncoast • Largo, Florida
This award-winning organization provides high-quality end-of-life care for 4,700 people
HOPE
each year, and in its Pinellas County region it is “the place to go” for support when death
OF
touches life. HFSC reaches out to many segments of the community—police ofﬁcers, em-
ployers and doctors’ ofﬁce staff, as well as families—with bereavement counseling services.
AND
“They helped me get myself together and prepare for the future,” said one widow whom
ISL
HFSC aided.
(16)

Hospice Use
3
patient’s last year of life, 10 to 17 percent in the last six months, and 25 to 40
percent in the ﬁnal month.41 Traditional end-of-life care seriously affects family
income and savings.42
Experts agree that patients need to be enrolled in hospice
for at least 60 days to maximize its beneﬁts, in terms of
pain and symptom management and psychological and
spiritual support.43 Unfortunately, the average length of
stay in hospice has dropped over the years, from 70 days
in 1983 to 36 days more recently. In 1998, 28 percent of hospice patients were
enrolled for one week or less before dying.44
✔ How we rated the use of hospice care
This report measures hospice use in two separate ways: How many state res-
idents who die receive hospice care, and for how long? For each, we placed
each state into one of ﬁve groups, A through E.
For the percentage of residents who obtain hospice care, states receiving an A
would be those where more than 50 percent of people over 65 used hospice in
their last year of life. For the length of hospice care, states in the A group would
have median patient stays of at least the recommended 60 days. The remaining
four grades were set at equal intervals. Data for the hospice care measure are
from 2000; data for length of stay are from 2001. Note that no state gets an A,
and only one achieves a B.
(17)

Hospice Use
3
People over 65 who used hospice in the last year of life, 2000
Range 4.9 – 42.0%
Mean 21.5%
> 50%
37.5 < 50%
25 < 37.5%
12.5 < 25%
0 < 12.5%
A
B
C
D
E
A —
B Arizona
C Colorado
D Alabama
Mississippi
West Virginia
E Alaska
Florida
Arkansas
Missouri
Wisconsin
Maine
Illinois
California
Montana
Wyoming
Michigan
Connecticut
Nebraska
Nevada
Delaware
New Hampshire
New Mexico
District of
New Jersey
Ohio
Columbia
New York
Oklahoma
Georgia
North Carolina
Oregon
Hawaii
North Dakota
Texas
Idaho
Pennsylvania
Indiana
Rhode Island
Iowa
South Carolina
Kansas
South Dakota
Kentucky
Tennessee
Louisiana
Utah
Maryland
Vermont
Massachusetts
Virginia
Minnesota
Washington
Source: Special analysis by the research team for the Dartmouth Atlas of Health Care, Web site www.dartmouthatlas.org.
(18)

Hospice Use
3
Median number of days in hospice, 2001
Range 13.7 – 42.9 days
Mean 25.3 days
> 60
45 < 60
30 < 45
15 < 30
0 < 15
days
days
days
days
days
A
B
C
D
E
A —
B —
C Alabama
D Arizona
Minnesota
Washington
E Rhode
Louisiana
Arkansas
Missouri
West Virginia
Island
Mississippi
California
Montana
Wisconsin
New Mexico
Colorado
Nebraska
Wyoming
North Carolina
Connecticut
New Hampshire
South Carolina
Florida
New Jersey
Georgia
New York
Hawaii
North Dakota
Idaho
Ohio
Illinois
Oklahoma
Indiana
Oregon
Iowa
Pennsylvania
Kansas
South Dakota
Data not available
Kentucky
Tennessee
Alaska
Maine
Texas
Delaware
Maryland
Utah
District of Columbia
Massachusetts
Vermont
Nevada
Michigan
Virginia
Source: National Hospice and Palliative Care Organization.
(19)

Hospice Use
3
C A S E S T U D Y
H o s p i c e c a r e a l l o w s
c o m f o r t a n d c l o s u r e
Around of chemotherapy had produced less than promising results
for Tom Bradshaw, 61. Doctors said that his esophageal cancer had grown,
and new cancers had appeared in his liver and stomach. Tom decided that he
did not want to spend his ﬁnal days in a losing battle with a rapidly advancing
and very painful disease. He preferred to be as comfortable as possible and at
home.
Tom and his wife, Mimi, contacted a local Miami hospice organization
that helped them set up the range of services Tom would need through what
turned out to be his ﬁnal two months of his life. The hospice assigned a nurse
and a physician to Tom’s case. Then hospice staff trained Mimi, their friends
and family, in administering Tom’s pain medications and using tiny ice chips
to help him cope with an extremely dry throat and mouth. The hospice nurse
also taught Mimi how to tell when Tom’s pain was increasing, so that he could
be given a higher dosage of morphine to bring him comfort.
In addition, Tom received visits from a family psychologist to discuss
death, and how to make peace with his son, with whom he had a strained re-
lationship. In his last meeting with the psychologist, Tom said, “I don’t want
to die, but it seems to be my time. It’ll be okay.”
When the hospice nurse estimated that Tom would probably die in about
two days, she told Mimi to alert family and friends who lived at a distance, so
that they would have time to visit with him and say goodbye. In those two
days, Tom was surrounded by a round-the-clock vigil of those who loved him.
Later, many said they felt good about the way Tom died. They were
grateful for the opportunity to be part of a courageous, peaceful and graceful
death in the comfort and familiar surroundings of Tom’s home. A social
worker from the hospice kept in touch with Mimi for a year after Tom’s death,
helping her to cope with her feelings of loss.
Adapted from an interview with Tom Bradshaw’s son, Keenan
(20)

Hospital End-of-Life Care Services
4
? Do hospitals in the state offer pain and palliative
care services?
Although the proportion of deaths occurring in hospitals is declining in
America, about half of all deaths still take place there. All
hospitals should offer critically ill and dying patients the
palliative care services they need. A self-reported survey
conducted by the American Hospital Association (AHA) in
2000 found that only 42 percent of U.S. hospitals reported
offering a formal pain management program, and 23
percent and 14 percent offered formal hospice or palliative
care programs, respectively. These services are deﬁned by the AHA as follows:
a) Pain Management: A formal program that educates staff about how to
manage chronic and acute pain based on accepted academic guidelines.
b) Hospice: A program providing palliative care and supportive services that
address the emotional, social, ﬁnancial and legal needs of terminally ill pa-
tients and their families. This care can be provided in the hospital or at
home under the auspices of the hospital.
c) Palliative Care Program: A program providing specialized medical care,
drugs or therapies to manage acute or chronic pain and/or control other
symptoms. The program, run by specially trained physicians and other cli-
nicians, also provides services such as counseling about advance directives,
spiritual care and social services to seriously ill patients and their families.
While the number of organized palliative care programs in hospitals is
increasing, they are not yet the norm and do not easily ﬁt into the coverage and
payment policies of Medicare and other insurers. Funding for these programs
often depends on cobbling together resources from different departments and
funding streams, including short-term grants. Their continuation is jeopardized
whenever any of these resources disappear.
(21)

Hospital End-of-Life Care Services
4
✔ How we rated the availability of end-of-life care
services in hospitals
As with any self-reported survey, the data depend on the accuracy of reporting
by many individuals. While such a method is less reliable than a special study,
the AHA has conducted this survey for many years, and it is a reasonably trust-
worthy snapshot of the nation’s approximately 6,000 hospitals.
Each service was considered separately. States were placed into one of ﬁve
equally distributed groups, with the better states having the most hospitals that
offer formal end-of-life care services. No state would earn an A in any of the
three services.
Beth Israel Medical Center • Manhattan
“We create a system around the patient,” says Russell K. Portenoy, M.D., describing the com-
HOPE
prehensive services of Beth Israel’s Department of Pain Management and Palliative Care. It
OF
offers patients and families—early in the trajectory of a serious illness—a broad range of
services, including intensive pain and symptom management, but also inpatient consultations,
AND
case management and community-based services. This successful program is becoming in-
ISL
tegral to patient care, teaching and research programs throughout the institution.
(22)

Hospital End-of-Life Care Services
4
Hospitals reporting pain management programs, 2000
Range 4.9 – 72.7%
Mean 42.3%
80 < 100%
60 < 80%
40 < 60%
20 < 40%
0 < 20%
A
B
C
D
E
A —
B Connecticut
C Alabama
Pennsylvania
D Alaska
E Mississippi
Delaware
Arizona
Rhode Island
Arkansas
Nevada
District of Columbia
California
South Carolina
Idaho
Wyoming
New Hampshire
Colorado
Utah
Iowa
New Jersey
Florida
Vermont
Kansas
Georgia
Virginia
Kentucky
New York
Hawaii
Washington
Louisiana
Illinois
Wisconsin
Minnesota
Indiana
Montana
Maine
Nebraska
Maryland
New Mexico
Massachusetts
North Dakota
Michigan
Oklahoma
Missouri
South Dakota
North Carolina
Tennessee
Ohio
Texas
Oregon
West Virginia
Source: Hospital Statistics. American Hospital Association, 2000 data.
(23)

Hospital End-of-Life Care Services
4
Hospitals reporting hospice programs, 2000
Range 5.0 – 57.5%
Mean 23.5%
80 < 100%
60 < 80%
40 < 60%
20 < 40%
0 < 20%
A
B
C
D
E
A —
B —
C Connecticut
D Arizona
New Jersey
E Alabama
Mississippi
Iowa
Arkansas
North
Alaska
Nevada
Wyoming
California
Carolina
Delaware
New Mexico
Colorado
North Dakota
District of
New York
Idaho
Ohio
Columbia
Oklahoma
Illinois
Oregon
Florida
Rhode Island
Indiana
Pennsylvania
Georgia
South
Massachusetts
South Dakota
Hawaii
Carolina
Michigan
Tennessee
Kansas
Texas
Minnesota
Vermont
Kentucky
Utah
Missouri
Virginia
Louisiana
West Virginia
Montana
Washington
Maine
Wisconsin
Nebraska
Maryland
New Hampshire
Source: Hospital Statistics. American Hospital Association, 2000 data.
(24)

Hospital End-of-Life Care Services
4
Hospitals reporting palliative care programs, 2000
Range 0 – 54.5%
Mean 13.8%
80 < 100%
60 < 80%
40 < 60%
20 < 40%
0 < 20%
A
B
C
D
E
A —
B —
C District of
D Connecticut
E
Alabama
Kentucky
Rhode Island
Columbia
Indiana
Alaska
Louisiana
South Carolina
Vermont
Maryland
Arizona
Maine
South Dakota
Massachusetts
Arkansas
Minnesota
Tennessee
Michigan
California
Mississippi
Texas
New Hampshire
Colorado
Missouri
Utah
New Jersey
Delaware
Montana
Virginia
New York
Florida
Nebraska
Washington
Ohio
Georgia
Nevada
West Virginia
Pennsylvania
Hawaii
New Mexico
Wisconsin
Idaho
North Carolina
Wyoming
Illinois
North Dakota
Iowa
Oklahoma
Kansas
Oregon
Source: Hospital Statistics. American Hospital Association, 2000 data.
(25)

Hospital End-of-Life Care Services
4
C A S E S T U D Y
A n i n t e g r a t e d h o s p i t a l - b a s e d
p a l l i a t i v e c a r e p r o g r a m
One of the nation’s premier hospital-based palliative care programs
functions at Mount Sinai Hospital in New York City’s Lilian and Benjamin
Hertzberg Palliative Care Institute. A consultation team (a nurse, 10 attending
physicians, some rotating fellows and a few residents in training) advises
hospital physicians who care for seriously ill patients on topics such as pain
and symptom management, when to use comfort care and how to talk about
treatment options with patients and family members.
The program also includes a four-bed inpatient unit for patients with dif-
ﬁcult emotional and physical symptoms and for those who need help ad-
justing to and planning a course of care for their terminal illness. The unit is
staffed by nurses, social workers, interns and residents, and works closely
with the consultation team.
A home care program staffed by Mount Sinai's Certiﬁed Home Health
Agency and Mount Sinai’s “Visiting Doctors” program cares for seriously ill
patients who are able to return home. Finally, a palliative care program trains
new physicians, using bedside teaching, clinical rotations and lectures.
Mount Sinai requires that all oncology and geriatrics fellows complete a one-
month clinical palliative care rotation.
According to program director Diane Meier, M.D., an increasing number
of hospital physicians are using the consultation team, and they are seeking
the team’s advice earlier in a patient’s care. About half of the patients for
whom the team consults are able to leave the hospital to go home, usually
with hospice care, or to a nursing home. In hospitals without these palliative
care services, such sick patients would probably die in the hospital.
Adapted from the Mount Sinai School of Medicine Web site, www.mssm.edu/geriatrics/
hertzberg.shtml
(26)

Care in ICUs at the End of Life
5
? How many elderly people spend a week or more
in intensive care units during the last six months
of life, meaning that they may have received
overaggressive care?
Hospital intensive care units (ICUs) and critical care units (CCUs) are where
patients with acute, life-threatening illnesses or injuries receive specialized
around-the-clock medical and nursing care, such as mechanical ventilation and
invasive cardiac monitoring. Each year more than 4 million patients are ad-
mitted to U.S. intensive care units,45 and about 500,000 of them die there.46
Many Americans fear spending their ﬁnal days in intensive care “connected to
machines.” ICU care is often uncomfortable and unwanted. For example, a
recent study of cancer patients being treated in the ICU found that 55 to 75
percent had moderate to severe pain, discomfort, anxiety, sleep disturbance
or unsatisﬁed hunger or thirst.47 Another study of ICU cancer patients
established that their treatment choices—as expressed by their advance
directives—did not affect whether life-support efforts were begun.48
Data in this report show that the percentage of people who died who spent a
week or more in an intensive care unit during the last six months of life ranged
MORE INFO
from 3.4 percent in Oregon to 17.3 percent in New Jersey. As with many of our
Data at the level of speciﬁc
measures, substantial variation exists within states. Some communities within
communities are available
the state will be well below the state average, while other communities will be
from the Dartmouth Atlas
of Health Care at
above it.
www.dartmouthatlas.org
(27)

Care in ICUs at the End of Life
5
✔ How we rated each state’s proportion of ICU deaths
End-of-life care in ICUs and CCUs has only recently gained the attention of re-
searchers. New initiatives are focusing attention on the type of care given in the
ICU, communication with patients and their families, and the amount of time
that terminally ill patients spend in an ICU. As yet, there is no consensus on
what percentage of people appropriately spend seven or more days in an ICU in
MORE INFO
the last six months of life.
For more information
on initiatives promoting
We therefore rated the states on a “curve” for this measure. The ﬁve states with
palliative care excellence
the lowest percentage of decedents who spent a week or more in the ICU in their
in intensive care,
last six months of life received an A. The ten next lowest were given a B, and
see www.
so on.
promotingexcellence.org.
(28)

Care in ICUs at the End of Life
5
People over 65 with 7 or more ICU days
during the last 6 months of life, 2000
Range 3.4 – 17.3%
Mean 10.1%
0 – 6.0%
6.1 – 7.5%
7.6 – 12.%
12.2 – 13.7%
13.8+%
A
B
C
D
E
A Colorado
B Idaho
C Alabama
Nebraska
D District of
E Delaware
Hawaii
Iowa
Alaska
New Mexico
Columbia
Florida
New
Maine
Arizona
New York
Illinois
New Jersey
Hampshire
Massachusetts
Arkansas
Nevada
Indiana
South
North Dakota
Minnesota
California
Ohio
Kentucky
Carolina
Connecticut
Oklahoma
Maryland
Tennessee
Oregon
Montana
Georgia
Pennsylvania
Michigan
Utah
Kansas
Rhode Island
North Carolina
Vermont
Louisiana
South Dakota
Texas
Washington
Mississippi
Wyoming
Virginia
Wisconsin
Missouri
West Virginia
Source: Special analysis by the research team for the Dartmouth Atlas of Health Care, www.dartmouthatlas.org.
(29)

Care in ICUs at the End of Life
5
C A S E S T U D Y
A d i f f i c u l t d e a t h
i n i n t e n s i v e c a r e
Joann’s mother, Violet, had surgery to remove a second brain tumor, and
in the years that followed the procedure she repeatedly told her family that if
anything were to happen, she did not want to endure “that sort of thing”
again. “She would say, ‘I’m tired. I’ve had enough. If anything else comes up,
I don’t want any more,’ “ Joann said. Violet never signed an advance directive,
but her family felt that her wishes were clear. Then, quite suddenly, she had a
heart attack and was rushed to the hospital. Facing a medical emergency, with
no clear instructions on what to do, the doctor put her on life support in the
intensive care unit. She remained there, semicomatose, for a week, and then
died.
Joann said later that there had been no room for intimacy or conversation
in the ICU, and physical contact with her mother was all but impossible.
During the rare moments when Violet was alert, she was alarmed to ﬁnd
herself in the hospital. “Because of all the tubes and this and that, you felt
like you couldn’t physically help,” Joann said, “and it’s hard to stroke
someone or be near them. You can’t even imagine saying goodbye because
it’s like they are not even there. You’re an observer. It was the equivalent of
being at a wake.”
If anyone had ever talked with Violet about what she meant by “nothing
extraordinary” and “I’ve had enough,” and then had discussed her wishes
with the doctor, perhaps he would have known not to intubate her. Had the
family known more about the medical system and the options available, and
what their mother wanted and didn’t want, perhaps they would have asked
that the ventilator be removed so that her dying would not have been pro-
longed and so that they could have said goodbye to her in peace.
From Virginia Morris, Talking About Death Won’t Kill You (New York: Workman Publishing,
2001). Reprinted with permission.
(30)

Pain Among Nursing Home Residents
6
? How well do the state’s nursing homes manage
their residents’ pain?
About 1.6 million Americans live in nursing homes and according to national
surveys, if they are in pain, it is not likely to be assessed or adequately treated.
These ﬁndings are sobering, given that many nursing home residents have
chronic conditions, and more than 20 percent of residents die there—
a ﬁgure projected to double by 2020. Adequate pain management for
seriously ill and dying nursing home residents is essential to achieving high-
quality end-of-life care in a state.49
According to a comprehensive national study conducted in 1999, nearly one-
sixth of nursing home patients are in daily pain, and more than 40 percent of
residents who were in pain at their ﬁrst pain assessment were still in severe pain
60 to 180 days later.50 Another recent study found that many dying nursing
home residents who are in daily pain receive either inadequate pain treatment
or none at all.51
✔ How we rated each state on how well its nursing
homes manage patients’ pain
The percentage of patients who are considered to be in persistent pain was cal-
culated by ﬁnding the percentage of patients in pain, when ﬁrst asked, who
were still in pain when asked again, 60 to 180 days later. States where fewer
than 25 percent of nursing home residents have persistent pain would have
received an A. (None qualiﬁed.) The remaining four groups were placed at
10 percent intervals, with states where rates of persistent pain are more than 55
percent receiving an E.
St. Joseph’s Manor • Trumbull, Connecticut
In 1997, when St. Joseph’s Manor started an institution-wide effort to improve end-of-life care,
HOPE
staff recognized that “dying is a sacred time, a life event that should be supported in special
OF
ways,” says Karin Tomsic, director of pastoral care and mission. An angel placed on a dying
resident’s door signals that additional support is needed, that it is time to say goodbye,
AND
and that routine events, such as equipment maintenance, should be set aside.
ISL
(31)

Pain Among Nursing Home Residents
6
Nursing home residents in persistent pain, 1999
Range 33.3 – 54.9%
Mean 42.2%
< 25%
25 < 35%
35 < 45%
45 < 55%
> 55%
A
B
C
D
E
A —
B Hawaii
C
Alabama
Maryland
Ohio
D Alaska
E Idaho
Arkansas
Massachusetts
Oregon
Arizona
California
Michigan
Oklahoma
Colorado
Connecticut
Minnesota
Pennsylvania
Kansas
Delaware
Missouri
Rhode Island
Montana
District of
Mississippi
South Carolina
Nevada
Columbia
Nebraska
Tennessee
New Mexico
Florida
New Hampshire
Texas
South Dakota
Georgia
New Jersey
Vermont
Utah
Illinois
New York
Virginia
West Virginia
Indiana
North Carolina
Washington
Iowa
North Dakota
Wisconsin
Kentucky
Wyoming
Louisiana
Maine
Source: Brown University Center for Gerontology and Health Care Research, www.chcr.brown.edu/dying/forreessearcherspsp.html.
(32)

Pain Among Nursing Home Residents
6
C A S E S T U D Y
U n n o t i c e d p a i n ,
u n n e c e s s a r y s u f f e r i n g
One year ago, Robert Wagner, 81, moved to a nursing home after a
stroke impaired his speech and paralyzed his right side. Robert found it
awkward and embarrassing to communicate. He struggled to complete a
sentence and was ashamed to gesture because of his immobilized right arm.
He seemed to avoid talking, even when his wife and friends were there.
Whenever nurses and physicians asked him how he felt, he routinely an-
swered, “Fine.”
One day, Robert’s occupational therapist noticed that he was frowning
and blinking often. Although he said, as usual, that he was ﬁne, the therapist
consulted with a physician who referred him to an ophthalmologist. During
the eye exam, the ophthalmologist inadvertently leaned against Robert’s left
leg. Robert let out a cry, and tears welled up in his eyes. The ophthalmologist
then realized that Robert was in pain. Further testing revealed a cancer in his
right femur.
Robert’s pain would not have gone unnoticed if the staff in his nursing
home had been properly trained to identify pain in their patients—even in
those who cannot communicate. Providers qualiﬁed to prescribe medications
are experienced in selecting the right pain medication at the right dosage, and
nursing home staff would have checked Robert’s comfort level frequently,
knowing that pain can ﬂare up unpredictably.
Adapted from the Partners Against Pain Web site, www.partnersagainstpain.org
(33)

State Pain Policies
7
? Do state policies encourage good pain control?
Medical experts agree that at least 90 to 95 percent of all serious pain can be
safely and effectively treated, yet at least half of dying patients report being in
pain.52 For the patient, unrelieved pain is oftentimes crippling; it triggers a
range of problems that include depression, social isolation, disturbed sleep, de-
creased mobility, falls, difﬁculty in thinking clearly, and loss of appetite. Unre-
lieved pain is costly to society in both direct and indirect
ways, and it can ruin the quality of life of patients and their
families.53
Many factors contribute to inadequate pain treatment, but
for most of them state-level data do not exist. One factor we
are able to assess is state policy relating to pain management.
State policy can have an impact on what doctors know about pain management,
their ability to prescribe adequate doses of pain medication, and their fears of
being sanctioned for overprescribing.
FAST FACT
“Opioids” are strong pain
medications derived from
All states have laws addressing controlled substances, such as opioids, which
opium, or synthesized
are primarily aimed at decreasing the chance that these drugs will be misused.
to behave like opium
Some of these state policies are useful and effective; some create formidable
derivatives. Examples of
barriers to good pain management. For example, certain laws would sanction a
opioids include morphine,
doctor based on the number of doses in a prescription or the prescription’s du-
codeine, oxycodone,
ration, both of which standards have no clinical basis and do not take into
methadone and fentanyl.54
account the very high doses that some patients may need.55
In July 2000, the American Bar Association recognized the numerous legal
barriers to good pain management and adopted a resolution urging state,
federal and territorial governments to remove legal barriers to high-quality pain
and symptom management, and to support the right of all patients to receive
effective pain and symptom evaluation, management and ongoing monitoring,
as part of basic medical care.56
(34)

State Pain Policies
7
✔ How we rated state pain policies
We assessed pain policies using six criteria and assigned a point value to each:
1 State policy explicitly addresses the needs of terminally ill patients
(1 point).
2 The state has a comprehensive pain management policy or has adopted the
model pain treatment guidelines issued by the Federation of State Medical
Boards (0 = no or none of the guidelines adopted; 1 point = adopted one or
two of the guidelines; 2 points = adopted several guidelines; 3 points =
adopted most or all).
3 State policy includes provisions that have the potential to impede pre-
scribing pain medication, particularly restrictions on medical decision-
making that could affect dying patients (–1 to –3 points, with –1 point =
only a few negative provisions; –2 points = several; –3 points = signiﬁcant
restrictions).
4 State policy reassures physicians that they can treat pain with opioids
without undue regulatory scrutiny (1 point).
5 State policy deﬁnes what constitutes good medical practice for pain man-
agement (2 points).
6 State policy expresses concern about the undertreatment of pain (1 point).
States were given grades, according to their overall score, which ranged from –2
to +9. States in the A group scored +8 to +9 overall, those in the B group scored
+6 to +7, and so on.
(35)

State Pain Policies
7
Strength of state pain policies, 2001
Range –2 – +9
+8, +9
+6, +7
+3, +4, +5
0, +1, +2
–2, –1
A
B
C
D
E
A Alabama
B Kentucky
C Arizona
D Arkansas
E Alaska
Florida
Maine
California
District of Columbia
Connecticut
Kansas
Maryland
Colorado
Georgia
Delaware
Nebraska
Minnesota
Montana
Iowa
Hawaii
North Carolina
Missouri
New Hampshire
Massachusetts
Idaho
New Mexico
Michigan
Illinois
Utah
Nevada
Oklahoma
Mississippi
Indiana
Washington
Pennsylvania
Oregon
New Jersey
Louisiana
Rhode Island
South Carolina
North Dakota
New York
West Virginia
South Dakota
Ohio
Wisconsin
Tennessee
Texas
Wyoming
Vermont
Virginia
Source: Based on Achieving Balance in Federal & State Pain Policy, dated July 2000, and updated in the Annual Review of State Pain Policies
2000 (published February 2001) and Annual Review of State Pain Policies 2001 (published February 2002) from the Pain and Policy Studies
Group of the University of Wisconsin’s Comprehensive Cancer Center, Madison, Wisconsin. More recent information may be available at the
group’s Web site: www.medsch.wisc.edu/painpolicy.
(36)

State Pain Policies
7
C A S E S T U D Y
U n d e r t r e a t m e n t o f p a i n
s p a r k s l e g i s l a t i v e c h a n g e
At age 85, William Bergman was dying of lung cancer. He was ad-
mitted to Eden Medical Center in northern California in February 1998, com-
plaining of intolerable pain. During a ﬁve-day hospital stay in which he was
treated by an internal medicine specialist, nurses charted Mr. Bergman’s pain
level at 10—the worst rating on their pain intensity scale. Despite his family’s
intention that his pain be addressed, Mr. Bergman’s internist sent him home—
still in agony—with inadequate medication. Ultimately, his family contacted
another physician who took a more aggressive approach, and Mr. Bergman
died at home soon afterward.
This case inspired the California legislature to pass Assembly Bill 487,
signed into law October 4, 2001. The new law requires that physicians who
fail to prescribe, administer or dispense adequate pain medication be charged
with unprofessional conduct and be investigated by the California Medical
Board’s Division of Licensing. Physicians found guilty of undertreating pain
must complete a pain-management education program.
Adapted from a story that appeared in Last Acts Quarterly, Summer 2001
(37)

Palliative Care-Certified Physicians and Nurses
8
? Does the state have enough physicians and nurses who
are trained and certiﬁed in palliative care?
Appropriate care for dying people requires a team of health professionals
trained in end-of-life care. While certiﬁcation in palliative care is now available
for physicians and nurses, few who offer this care have specialty training. For
both physicians and nurses, certiﬁcation programs in palliative care help to set
standards of quality care and provide clinicians who can serve as change agents
and leaders in the ﬁeld of end-of-life care and within their institutions.
Since 1996, the American Board of Hospice and Palliative Medicine (ABHPM)
has offered physicians certiﬁcation in palliative care. As of March 2002, 917
U.S. doctors had passed the board’s examination. Certiﬁ-
cation is an acknowledgment of a physician’s knowledge, at-
titudes and skills as they apply to good palliative care. Ac-
cording to a recent study, certiﬁed physicians are more likely
than their noncertiﬁed peers to believe themselves ade-
quately prepared to provide palliative care (70 percent
versus 38 percent); however, only 39 percent of physicians providing palliative
care are certiﬁed.57
As of January 2002, 7,623 U.S. nurses were certiﬁed in hospice and palliative
care as CHPN (“Certiﬁed Hospice and Palliative Nurse”). The Hospice and Pal-
liative Nurses Association (HPNA) has provided this certiﬁcation since 1994. To
be certiﬁed, CHPNs must demonstrate both knowledge and competency in
hospice and palliative nursing. Large hospice programs are beginning to ac-
knowledge the beneﬁts of having certiﬁed nurses on their staffs. Several
programs and state hospice organizations sponsor review courses and provide
ﬁnancial assistance to nurses interested in certiﬁcation; others offer certiﬁed
nurses higher salaries.58
While accreditation standards for medical schools now include the mandate to
cover end-of-life care, the requirement contains no clear standards for that in-
struction.59 As the Accreditation Council for Graduate Medical Education does
not yet accredit palliative medicine residencies or fellowships, a limited number
of these programs currently exist.
(38)

Palliative Care-Certified Physicians and Nurses
8
Several excellent programs do exist for practicing health care professionals. One
of these is the Education for Physicians on End-of-Life Care (EPEC) project,
which trains physicians both to provide such care and to train others to do so.
EPEC is designed to educate physicians about the essential clinical compe-
tencies required to provide quality end-of-life care. As of February 2002, the
EPEC project had trained 863 physicians and other health care professionals.60
A study of physicians and hospitals providing palliative care found that the
EPEC program “plays a key role in educating physicians on palliative care.”61
ELNEC (End-of-Life Nursing Education Consortium) is a program to train a
core of expert nurse-educators and to coordinate national nursing efforts in
end-of-life care. ELNEC began in February 2000 and will continue for three
and a half years. The program involves three-day courses for baccalaureate and
associate-degree faculty, who then can facilitate the integration of end-
FAST FACT
Nearly 40 million Americans
of-life nursing care into basic nursing curricula. The eighth course, scheduled
will be 65 or older by 2010.
for January 2003, is for state board of nursing representatives to strengthen
The baby boomers—those
their commitment to encouraging end-of-life care education and practice
born between 1946 and
initiatives.62 As of April 2002, there were 937 ELNEC trainers in the United
1964—will start turning 65
States.
in 2011. Their numbers will
drive an elder boom.66
By 2030, one-ﬁfth of the
Other efforts are under way to incorporate palliative care and end-of-life care
U.S. population, more than
into the medical school curriculum. Studies demonstrating a lack of end-of-life
70 million people, will be
material in medical textbooks have sparked a response by publishers.63
over the age of 65.67
In addition, educators and students are establishing new end-of-life curricula in
medical education.64,65
(39)

Palliative Care-Certified Physicians and Nurses
8
✔ How we rated the supply of palliative care-certiﬁed
physicians and nurses
This report compares states on the percentage of physicians or nurses who
are certiﬁed in palliative care. Our measure considers data for physicians
and nurses separately, in part to emphasize the need for progress in both ﬁelds.
In practice, however, palliative care should be a collaborative effort, involving a
team of practitioners rather than a doctor or nurse working alone. Nurses spend
more time with dying patients and families than do any other health care pro-
fessionals and are intimately involved in all aspects of end-of-life care.68
Since an “ideal” percentage of certiﬁed palliative care health care practitioners
has not been established, we rated states on a “curve” for this measure. The ﬁve
states with the highest percentage of palliative care certiﬁed physicians or
nurses are in the A group. The B group contains the 10 states with the next
highest percentages, and so on.
(40)

Palliative Care-Certified Physicians and Nurses
8
Percentage of general primary care and primary care subspecialty
physicians who are certiﬁed in palliative medicine, 2000
Range 0.00 – 0.97%
Mean 0.33%
0.50 –
0.37 –
0.22 –
0.18 –
0.00 –
0.97%
0.49%
0.36%
0.21%
0.17%
A
B
C
D
E
A Maine
B Arizona
C California
Rhode Island
D Alabama
E Alaska
Montana
Florida
Colorado
South Dakota
Arkansas
Georgia
New
Iowa
Connecticut
Tennessee
Indiana
Idaho
Hampshire
Kansas
Delaware
Texas
Massachusetts
Nebraska
New Mexico
Michigan
District of
Washington
Nevada
North Dakota
Columbia
West Virginia
New Jersey
South
Vermont
Ohio
Hawaii
Wisconsin
North Carolina
Carolina
Oklahoma
Illinois
Pennsylvania
Virginia
Utah
Kentucky
Wyoming
Louisiana
Maryland
Minnesota
Mississippi
Missouri
New York
Oregon
Source: American Board of Hospice and Palliative Medicine; www.abhpm.org. American Medical Association. Physician Characteristics and
Distribution in the US, 2002–2003 Edition (Chicago: American Medical Association Press, 2002).
(41)

Palliative Care-Certified Physicians and Nurses
8
Percentage of full-time-equivalent nurses (estimated)
who are certiﬁed in palliative care, 2000
Range 0.09 – 1.13%
Mean 0.41%
0.66 –
0.50 –
0.30 –
0.18 –
0.00 –
1.13%
0.65%
0.49%
0.29%
0.17%
A
B
C
D
E
A Delaware
B Arizona
C California
Texas
D Alabama
E Alaska
Kentucky
Florida
Colorado
Virginia
Arkansas
District of
Montana
Maine
Connecticut
Washington
Idaho
Columbia
New
Maryland
Georgia
Wyoming
Louisiana
Missouri
Hampshire
New Mexico
Hawaii
Mississippi
Rhode Island
Illinois
Nevada
South Dakota
Vermont
Ohio
Indiana
New York
Oklahoma
Iowa
North Dakota
Oregon
Kansas
South Carolina
West Virginia
Massachusetts
Tennessee
Wisconsin
Michigan
Utah
Minnesota
Nebraska
New Jersey
North Carolina
Pennsylvania
Source: Hospice and Palliative Nursing Association; www.hpna.org/. HRSA, Division of Nursing. The National Survey of Registered Nurses,
March 2000: Preliminary Findings February 2001.
(42)

Palliative Care-Certified Physicians and Nurses
8
C A S E S T U D Y
D o c t o r s f e a r e n d - o f - l i f e
d e c i s i o n s , t o o
Adoctor was treating a patient whose cancer had spread to 11 dif-
ferent areas of the brain. Chemotherapy and radiation no longer held any
promise; it was time to focus on comfort. And yet, according to one col-
league, the doctor kept softening anything he said with words like “yet” or “at
this time.” So the family kept asking, “Is it time for more chemo yet?” The
doctor admitted privately that he was hoping the patient would decide against
further chemotherapy, which would end the discussion and put the weight of
the decision on the patient’s shoulders, rather than on his or the family’s.
This scenario could have been avoided had the doctor been properly
trained in end-of-life care. He could have been more direct and honest in
telling the patient and family that more treatment would be senseless. He
could have discussed care options (including hospice) to ensure that the
patient’s remaining days would be spent as comfortably as possible. At
the very least, he could have informed the patient and family that death was
approaching, allowing time for everybody to say goodbye.
From Virginia Morris, Talking About Death Won’t Kill You (New York: Workman Publishing,
2001). Reprinted with permission.
(43)

Recommendations for Action

Recommendations
for Action
As the data in this report indicate, Americans’ likelihood of receiv-
ing good end-of-life care varies widely, depending on where they live, what they
know about quality end-of-life care services and the type of care they choose.
Even though some aspects of care may be better in some states than in others,
in general, care for dying Americans is no better than
mediocre. This is true despite years of research, im-
proved professional education and training, the ex-
cellent record of hospice, innovation among hos-
pitals and some nursing homes, grassroots advocacy
and millions of dollars of private philanthropy—all directed at advancing the
understanding and availability of good palliative care near the end of life.
Last Acts believes that the United States is at a crossroads. The state-by-state
data we have gathered and analyzed here depict a nation that is coping poorly
with critically ill and dying people right now. As we noted, there were no
available data on spiritual and cultural issues at the end of life that could be
tracked by state; however, there is no reason to believe that these matters are
being well addressed nationwide. Meanwhile, demographers forecast a con-
stantly growing number of elderly people and ever higher burdens of chronic
illnesses. Much more must be done to make dying a more compassionate and
caring experience, both for the patient and for the family, in America.
Last Acts recommends the essential steps that follow.

✔ Actions for Public Policymakers
General
1. Make quality end-of-life care a priority for national health policy.
2. Make end-of-life care a special priority in aging policy.
3. Support public/private initiatives to meet the needs of family caregivers.
4. Encourage policies to enhance consumers’ knowledge of the options for
quality care near the end of life.
Decision-Making
5. Promulgate policies that encourage advance care planning and out-of-
hospital Do Not Resuscitate programs.
6. Ensure that in the absence of advance directives, family surrogacy is rec-
ognized and used in the best interests of dying people.
Professional Capacity
7. Set state targets for the numbers of doctors and nurses with palliative care
training needed to care for the state’s critically ill and dying patients, and
work with state-funded educational institutions to achieve them.
8. Encourage requirements for continuing medical and nursing education
about end-of-life care.
Service Delivery
9. Establish good pain management policies that tackle the problem of under-
treatment of pain.
10. Encourage coordination of health services programs used by dying people
of all ages, to promote continuity of care.
11. Require that hospitals and nursing homes establish palliative care
services—using appropriately trained multidisciplinary teams, meeting
quality standards and encouraging contracting with hospice—as a con-
dition of their participation in Medicare and Medicaid.
12. Reassess the rules and regulations that apply to nursing homes (where re-
habilitation is the mission) and allow greater ﬂexibility in caring for dying
residents.
13. Support the provision of hospice services in government-run institutions—
prisons, jails, mental hospitals, and so on.
14. Change the Medicare hospice eligibility criteria to allow Medicare beneﬁ-
ciaries to qualify for the Hospice beneﬁt by diagnosis rather than an es-
timate of a six-month prognosis of terminal illness.
(48)

Research and Financing
15. Support large-scale demonstrations of promising models of coordinated
end-of-life care that are likely to show both better quality of life for patients
and families, and cost savings.
16. If these demonstrations warrant, revise Medicare and Medicaid beneﬁts to
cover the clinical, counseling and support services essential to high-quality
end-of-life care.
17. Collect data to assess quality, cost and access to end-of-life care in a variety
of settings.
18. Develop evidence-based palliative care clinical protocols.
✔ Actions for Health Care Leaders
1. Work to establish multidisciplinary palliative care services in hospitals—
particularly in intensive care units—and nursing homes for seriously ill
patients who have symptoms that are difﬁcult to handle or painful
treatments, or who are likely to die.
2. Include hospice or palliative care service rotations in physician, nurse,
social work and pharmacy training.
3. Encourage the capacity of end-of-life teams to be culturally competent.
4. Expand the relevant training and role of social workers—particularly about
advance care planning, recognizing cultural issues and the need for family
support.
5. Convey the expectation of good pain and symptom management to clinical
staff in hospitals, nursing homes and other settings.
6. Work with clinicians on key communications skills: breaking bad news and
setting realistic treatment goals. Currently, few know how to do this well.
7. Support practicing physicians who seek training in palliative care.
8. Engage in ongoing clinical and process improvement efforts.
9. Advocate tirelessly for the comfort and support of dying patients and their
families.
(49)

✔ Actions for Everyone
1. Learn what constitutes good end-of-life care.
2. Don’t be afraid to insist that your loved one, friend or neighbor receive it.
3. Join others in your state or community who are trying to make positive
changes.
4. Ask your employer to have policies in place to help seriously ill employees,
those caring for a seriously ill family member, and those who are bereaved.
5. Complete your own advance directive and discuss it with your family,
health care proxy and physician. Update it every ﬁve years or when your
health changes.
6. Encourage your spiritual leader to help your congregation explore the
spiritual aspects of illness and death, and organize to help seriously ill
members and their families.
7. Learn practical ways to help friends and family who are grieving.
Americans have successfully avoided the unpleasant topic of death and dying
for two or three generations. But now, as we begin to experience a rapid in-
crease in the number of elderly citizens, our denial comes at a price we cannot
afford—the risk of leaving more and more Americans without good, sup-
portive, affordable care as their lives come to a close.
The data brought together in this report represent the best statistics currently
available regarding end-of-life care in America. We ardently wish that they will
inspire better, more thorough and complete documentation of progress at the
national, state and local levels. The many people who aided Last Acts in com-
piling this report share the hope that it will raise public awareness, spur both
the expectation and demand for good end-of-life care, and help everyone who
cares about our future to make a clear and factual case for reform.
(50)

Momentum for Change

Momentum
for Change
Statewide coalitions and partnerships in 30 states are working to build a
diverse constituency for improving the quality of end-of-life care. Through
them, signiﬁcant numbers of community, professional and policy stakeholders
are able to identify common obstacles, create comprehensive strategies, and
carry out mutually agreed-on policy and educational initiatives. There are four
main goals for their activities:
■
To improve advance care planning.
■
To improve pain management.
■
To improve the quality of care and care coordination.
■
To increase both the demand for and access to high-
quality end-of-life care.
The groups vary considerably in terms of management
structure, type of lead organization and mechanisms for
carrying out initiatives. A handful grew out of state end-of-life commissions
that gathered data and set reform agendas. Others were formed from well-
established hospice, bioethics, health care decision-making or pain policy or-
ganizations. A few have been in existence for more than a decade; others have
formed since 1998, or even more recently.
Many of the coalitions began by gathering information about serious barriers to
good end-of-life care, which they have used to inform their respective statewide
plans of action. Typically, the groups:
■
Create consumer education tools that empower patients to plan and ad-
vocate for themselves and their loved ones at the end of life.
■
Help public agencies, associations of faith leaders, state nursing groups and
others identify end-of-life care as a critical agenda item.
■
Launch coordinated community outreach efforts around programs such as
Bill Moyers’ four-part PBS series, On Our Own Terms.

■
Obtain media coverage that raises the public’s expectation of excellent care.
■
Spotlight cultural, ethnic, social and economic diversity issues to ensure that
excellent end-of-life care is available to underserved and vulnerable people
as well as those who can afford it.
■
Organize training sessions for practicing physicians, nurses, pastoral care
professionals and other members of palliative care teams using tested edu-
FAST FACT
Largely through the work of
cational programs such as the Education for Physicians on End-of-Life Care
statewide coalitions, 160
(EPEC) curriculum.
separate legislative acts
■
Conduct model quality improvement projects focused on advance care
were passed in 23 states
planning and pain management in nursing homes and other care settings.
between 1999 and 2001.
■
Organize state licensing boards to adopt joint pain policy standards or issue
interpretations of laws and regulations.
■
Educate policy leaders on how to revise existing state policies and create
new policies related to end-of-life care.
Overall, the statewide end-of-life care initiatives have proved their ability to
overcome the competition and dissension that sometimes keep natural allies
from collaborating and promoting the common good. They help states create a
whole that is greater than the sum of its parts.
•
•
•
The map opposite shows the 30 existing statewide coalitions and partner-
ships and is followed by brief descriptions of each one with complete contact
information.
(54)

Statewide End-of-Life Care Initiatives
■ Community-State Partnerships to Improve
End-of-Life Care
■ Statewide Initiatives: Rallying Points
■ Alabamians for Better Care at Life’s End
■ Missouri End-of-Life Care
■ California Coalition for Compassionate Care
■ Nebraska Coalition for Compassionate Care
■ Connecticut Coalition to Improve End-of-Care—Better Endings
■ Nevada Center for Ethics and Health Policy
■ District of Columbia Partnership to Improve End-of-Life Care
■ New Hampshire Partnership for End-of-Life Care
■ The Florida Partnership for End-of-Life Care
■ New Jersey Comfort Care Coalition
■ Georgia Collaborative to Improve End-of-Life Care
■ North Carolina: The Carolinas Center for Hospice and
End-of-Life Care
■ Hawaii Kokua Mau
■ North Dakota Matters of Life & Death Project
■ Illinois Coalition for Improving End-of-Life Care
■ Oklahoma Alliance for Better Care of the Dying
■ Indiana Hospice & Palliative Care Organization
■ Rhode Island: Improving Quality of Care for Our Most
■ Iowa Partnership for Quality Care in Dying with Dignity
Vulnerable Population
■ Kansas LIFE Project—Living Initiatives for End-of-Life Care
■ Tennesseans End-of-Life Partners
■ Journey’s End—A Kentucky Partnership for Quality End-of-Life Care
■ Texas Partnership for End-of-Life Care
■ Maine Center for End-of-Life Care
■ Utah Partnership to Improve End-of-Life Care
■ Massachusetts Compassionate Care Coalition
■ Washington State End-of-Life Consensus Coalition
■ Michigan Partnership for the Advancement of End-of-Life Care
■ West Virginia Initiative to Improve End-of-Life Care
■ Minnesota Partnership to Improve End-of-Life Care
■ Community–State Partnerships to Improve End-of-Life Care
Source: National Conference of State Legislatures; Community-State Partnerships; Rallying Points.
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Alabamians for Better Care at Life’s End
Formed in 1999, the partnership is focused on improving access to end-of-
life care for the most disadvantaged Alabamians. The partnership is working
to build professional and lay education opportunities through nursing cur-
riculum reform and a palliative care rural scholars program. It is also work-
ing to implement pain as a ﬁfth vital sign at the University of Alabama at
Birmingham Hospital and eventually at other institutions; to create a clergy
education program; and to liberalize Medicaid regulations. The group re-
cently co-sponsored an interdisciplinary one-day Intensive Palliative Care
Introduction/Review Course. Contact: Kay Johnson, R.N., M.P.H., University of
Alabama at Birmingham Palliative Medicine Program, 1801 Building, 1530
Third Avenue South, Birmingham, AL 35294-0023. Phone: (205) 975-9815.
E-mail: kayjohns@uab.edu.Web: www.abcle.org.
California Coalition for Compassionate Care
The California program is carried out by a 35-member partnership formed in
1998. The coalition has three major initiatives: (1) end-of-life care guidelines
for skilled nursing facilities; (2) advance care planning tools in English and
Spanish; and (3) professional education efforts that include EPEC training for
practicing physicians. The group is highly regarded as an educational resource
on end-of-life issues by California policymakers. A recent initiative is the
establishment of several Latino advisory committees that are working to-
gether to guide community outreach efforts directed at Spanish-speaking
Californians. Contact: Marge Ginsburg, Executive Director, Sacramento
Health Care Decisions, 10540 White Rock Road, Suite 135, Rancho Cordova,
CA 95670. Phone: (916) 851-2828. E-mail: marge.shd@quiknet.com. Web:
www.ﬁnalchoices.calhealth.org.
Connecticut Coalition to Improve End-of-Life Care—
Better Endings
The Connecticut coalition is a statewide not-for-proﬁt organization that ad-
dresses a comprehensive array of end-of-life care issues. Its six task forces are:
Public Education, Professional Education, Law and Ethics, Services and the
Continuum, Research, and Arts and Humanities. Focused on public, profes-
sional and policymaker education, the task forces engage in projects related to
community outreach and focus group research, advance care planning, best
practices in end-of-life care, professional education for medical students, de-
velopment of consumer education materials and caregiver support. Contact:
Karen Weingrod, Director, Connecticut Coalition, 300 Research Parkway,
Meriden, CT 06450. Phone (203) 237-4556. E-mail: kweingrod@canpfa.org.
Web: www.canpfa.org/endoﬂife/index.htm.
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District of Columbia Partnership to Improve End-of-Life Care
This District-wide program is guided by a community advisory board whose
members represent many cultures and ethnic groups within the city. Initiatives
have four focus areas: Professional Education, Public Education, Public
Policy, and Research. All areas utilize the combined expertise of a broad array
of professionals, health care organizations, professional schools and community
organizations to effect systematic, sustained reform of care for residents of
the D.C. metropolitan area who are facing life-limiting illnesses. Contact:
Joan Panke, M.A., A.P.R.N., Executive Director, D.C. Partnership, c/o District of
Columbia Housing Authority, 1250 Eye Street, N.W., Suite 700, Washington,
DC 20005. Phone: (202) 289-6231. E-mail: jpanke@dcha.org. Web:
www.dcha.org/EOL/eol.htm.
The Florida Partnership for End-of-Life Care
Based on the recommendations of a state end-of-life work group, state part-
nership initiatives have included a statewide network of community-based
coalitions, the State’s ﬁrst-ever pain management training program for phar-
macists, a DNR order demonstration project, an end-of-life care education
program for EMS providers, public education campaigns involving the
statewide aging network, ethics educational materials for diverse populations,
and professional end-of-life care educational programs with special sessions for
attorneys and clergy. Contact: Robyn Chase, Coordinator, Florida Partnership,
1616 Metropolitan Circle, Suite D, Tallahassee, FL 32308. Phone: (850) 878-
2632. E-mail: ﬂpartners@nettally.com. Web: www.ﬂoridapartnership.org.
Georgia Collaborative to Improve End-of-Life Care
The focus of the Georgia collaborative is educating nurses, physicians and
health facility surveyors. The partnership works collaboratively to present
ELNEC training for nurses and social workers in the state. Contact: Glenn
Landers, Georgia Collaborative, c/o Georgia Health Policy Center, One Park
Place South, Atlanta, GA 30303. Phone: (404) 463-9562. E-mail: mail@
gaeolcare.org.
Hawaii Kokua Mau
Kokua Mau, which means continuous care, builds on four key recommen-
dations that emerged from a statewide planning process conducted by
Governor Ben Cayetano’s Blue Ribbon Panel on Living and Dying with Dignity.
Hawaii’s multicultural, multiracial citizens face a unique and complex challenge
in ﬁnding quality end-of-life care in the setting of their choice. Therefore, the
Kokua Mau project focuses on providing culturally appropriate practical re-
sources to the clergy; running a speaker’s bureau and conducting a statewide
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public awareness campaign; piloting a pain as a ﬁfth vital sign demonstra-
tion project; and providing updated information to policymakers and health
care regulatory boards. Contact: Joanna Crocker, Ph.D., Project Coordina-
tor, Executive Ofﬁce on Aging, No. 1 Capitol District, 250 South Hotel Street,
Suite 406, Honolulu, HI 96813-2831. Phone: (808) 586-7285. E-mail:
jcrocke@mail.health.state.hi.us. Web: www.kokuamau.org.
Illinois Coalition for Improving End-of-Life Care
The Illinois coalition has several priority activities that include providing edu-
cation on end-of-life issues such as pain management and use of advance di-
rectives to both professional and community groups. Contact: Mickey Stanley,
Executive Director, Illinois Coalition for Improving End-of-Life Care, 200 West
Third Street, Suite 704, Alton, IL 62002. Phone: (618) 275-4336. E-mail:
Stanley@shawneelink.com.
Indiana Hospice & Palliative Care Organization
The organization (IHPCO) provides a statewide consumer helpline on family
caregiving, manned by a social worker. The organization recently developed
a public education campaign, “Say You Care: Start the Conversation,” which
features conversation starters, a workbook for families, a family caregiving
information sheet, a video and a public service announcement featuring
basketball star Larry Bird. The group also serves as a clearinghouse for profes-
sionals on end-of-life issues and advocates on behalf of the terminally ill and
their loved ones. Contact: Harriet O’Connor, President and CEO, IHPCO, 1720
Market Tower Building, 10 West Market Street, Indianapolis, IN 46104. Phone:
(317) 464-5145. E-mail: inhospiceorg@att.net.
Iowa Partnership for Quality Care in Dying with Dignity
The Iowa partnership has 108 members and more than four dozen community
coalitions. Four work groups address speciﬁc issues related to enhancing the
quality of end-of-life care. These work groups (1) promote Iowans’ end-of-life
care awareness and knowledge; (2) distribute the partnership’s Implementing
Pain as a Fifth Vital Sign manual throughout Iowa health care institutions; (3)
develop guidelines for EMS agency and personnel for out-of-hospital DNR
orders and promote related legislation; and (4) increase access to oral health
care at the end of life. The partnership also plans to pilot a faith community ini-
tiative. Contact: Tanya Uden-Holman, Ph.D., M.A., Assistant Professor (Clinical
Track), Institute for Quality Healthcare, University of Iowa, 5229 Westlawn
Building South, Iowa City, IA 52242-1100. Phone: (319) 335-8708. E-mail:
tanya-uden-holman@uiowa.edu. Web: www.public-health.uiowa.edu/EndOfLife/.
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Kansas LIFE Project—Living Initiatives for End-of-Life Care
The Kansas LIFE Project is a collaborative effort of more than 70 agencies
and organizations including governmental agencies, professional associa-
tions, licensing boards, academic institutions, medical providers, media,
consumer action groups and a Caring Communities program. The shared
mission of the LIFE Project Partners is to help Kansans live with dignity,
comfort and peace as they near the end of life. The project’s strategic initiatives
are focused on impacting three arenas—public policy, professional education
and systems change, and public engagement and awareness. Contact: Stacie
Ogborn, Project Manager, LIFE Project Foundation, 1901 University, Wichita,
KS 67213. Phone: (316) 263-6380. E-mail: stacie@lifeproject.org. Web:
www.lifeproject.org.
Journey’s End—A Kentucky Partnership for Quality
End-of-Life Care
The centerpiece of the Kentucky Partnership is establishment of a new Leg-
islative Taskforce on End-of-Life Care chaired by State Sen. Julie Denton. The
partnership also recently learned that the University of Louisville is supporting
its proposal for a new center for research in end-of-life care. The partnership has
a number of other initiatives under way. They include: (1) education of prac-
ticing professionals using the EPEC curriculum; (2) a toll-free peer resource help
line for professionals staffed by ﬁve board-certiﬁed palliative care physicians and
initiated July 2000; (3) development of pain management and advance care
planning guidelines to be piloted in ﬁve long-term-care facilities; and (4) imple-
mentation of a coordinated case management service to support a wide array of
interdisciplinary palliative care services for a Medicaid partnership, called
Passport. Contact: Jennifer Scharfenberger, Project Coordinator, KHA Center for
Nursing and Allied Health Professions, 2501 Nelson Miller Parkway, Louisville,
KY 40223. Phone: (502) 426-6220. E-mail: JScharfenberger@kyha.com. Web:
www.journeysendky.org.
Maine Center for End-of-Life Care
The newly created Maine Center for End-of-Life Care builds on the work of
the Maine Consortium for Palliative Care & Hospice and the 18-year-old
Maine Hospice Council. The partnership has developed a resource directory; a
hospice/palliative care rotation for second-year medical students at the Uni-
versity of New England; and an interfaith manual on end-of-life care. An im-
portant aspect of the project is the involvement of health care insurers and af-
ﬁliates and other health care organizations in development of an ideal services
package that includes universal access to hospice and end-of-life care. The
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center currently supports ﬁve regional coalitions and is working with the state
long-term-care association on standards of best practice and employee re-
tention. Contact: Kandyce Powell, R.N., M.S.N., Maine Hospice Council, 16
Winthrop, P.O. Box 2239, Augusta, ME 04338-2239. Phone: (207) 626-0651.
E-mail: kpowell@saturn.caps.maine.edu. Web: www.mcpch.org.
Massachusetts Compassionate Care Coalition
MCCC is a voluntary collaborative of organizations, agencies, institutions
and individuals who seek to enhance care for people affected by life-limiting
illnesses. The group works closely with the Massachusetts legislature’s Com-
mission on End-of-Life Care. MCCC has been engaged in a variety of public
outreach projects: promoting community conversations on advance care
planning and developing several theater and visual arts projects. The coalition
sponsors regular networking breakfasts that bring professionals and consumers
together. MCCC co-sponsored a seminar on “Ethics and The Health Professions
in End-of-Life Care” with Brandeis University in October 2002. Contact: Carol
Wogrin, Executive Director, MCCC, 53 Langley Road, Suite 260, Newton
Center, MA 02459. Phone: (617) 964-1196. E-mail: cwogrin@ mountida.edu.
Michigan Partnership for the Advancement of
End-of-Life Care
The Michigan Partnership for the Advancement of End-of-Life Care strives to
increase the quality of, accessibility to, and timeliness of referrals to palliative
and end-of-life care in Michigan. The partnership has a number of accom-
plishments over the past three years. Educators from medicine, nursing,
pharmacy, social work and pastoral care developed competencies for end-of-life
care and promoted those standards and available resources within their insti-
tutions and disciplines. Members of the partnership helped the state’s regu-
latory agency develop and adopt statewide pain management and end-of-life in-
dicators for use by long-term care facilities and surveyors. Focusing on diverse
communities and end-of-life care decision-making, the partnership developed
a well-received community education training program and supporting ma-
terials. Contact: Bradley McKinney, M.P.H., M.S.W., Project Director, Michigan
Partnership, 6015 West St. Joseph Highway, Suite 104, Lansing, MI 48917.
Phone: (517) 886-6667. E-mail: bradhospice@aol.com.
Minnesota Partnership to Improve End-Of-Life Care
The Minnesota partnership began in 1997 when representatives from three
large health insurers began discussing a joint project to improve end-of-life care
for Minnesotans. The partnership also staffed a 26-member state commission to
identify and address public policy barriers to good care, with a focus on state
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funding, education and licensure. While the partnership is in transition to
reﬁne its mission and search for a new host agency, board chair Mary Lou Irvine
is the contact: mary.l.irvine@healthpartners.com.
Missouri End-of-Life Coalition
The Missouri coalition was formed in 1998 to foster cooperation, education and
research to promote high-quality care for the dying. It develops and promotes
public awareness projects that educate health care providers, students, policy-
makers and the public regarding optimal care; fosters collaborative research
efforts; and promotes advance care planning that enables dying persons, loved
ones and caregivers to express their needs and expectations. The coalition has
two current projects: work with the state Emergency Medical Services Bureau
to implement local EMS unit policies that honor out-of-hospital DNR order re-
quests; and collaboration on an end-of-life care manual to guide policies and
procedures in nursing facilities. Widespread distribution will be followed by
regionalized training. Contact: Cindy Baird, Executive Director, Missouri
Hospice & Palliative Care Association, 3905 Stonewall Avenue, Independence,
MO 64055. Phone: (816) 350-7702. E-mail: cindy@mohospice.org.
Nebraska Coalition for Compassionate Care
The Nebraska coalition has a number of educational, awareness and coalition-
building efforts aimed at physicians, nursing home residents and the general
public. Two priority activities are: promotion of a new publication, An Educa-
tional Guide on End-of-Life Care Law and Public Policy in Nebraska, which ex-
plains how health care professionals can offer the best care without violating ap-
plicable state laws; and a joint project with the Nebraska Hospice Association
to launch an initiative that will measure quality of life and satisfaction with
care, and monitor health care dollars spent on end-of-life care. Contact: Greg
Schleppenbach, Operations Board Chair, NCCC, P.O. Box 94714, Lincoln,
NE 68509-4714. Phone: (402) 477-0204. E-mail: gregschlepp@alltel.net. Web:
www.nebrccc.org.
Nevada Center for Ethics and Health Policy
The Nevada Center for Ethics and Health Policy carries out activities initiated
by the State’s Attorney General and outlined in the statewide plan, “Death with
Dignity and Caring in the State of Nevada.” Housed at the University of Nevada,
Reno, the program trains teams of clinicians drawn from underserved areas of
Nevada; carries out statewide campaigns focused on advance care planning;
staffs continuing education programs for community health nurses; works with
licensure boards, professional associations and other institutions to integrate
end-of-life policies that reﬂect recent changes in Nevada law; and organizes
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interdisciplinary conferences for doctors and nurses on pain relief practices and
what it means to have a digniﬁed death. Contact: Noel Tiano, Th.D, Executive
Director, Nevada Center for Ethics and Health Policy, University of Nevada/339,
Reno, NV 89557-0133. Phone: (775) 327-2309. E-mail: noel@unr.edu. Web:
www.unr.edu/ncehp.
New Hampshire Partnership for End-of-Life Care
The New Hampshire partnership is driven by ﬁndings from a 1998 statewide
study, “Death in New Hampshire: A Review of Medical Charts.” The centerpiece
of its activity is a series of regional education initiatives across the state to help
patients and families engage in advance care planning and complete directives.
A public information campaign promotes the importance of talking about
treatment preferences and reinforces the local education initiatives. Workshops
and quality improvement efforts inform health care professionals, insurers and
others about best practices related to advance care planning. Related efforts are
designed to encourage health and spiritual care providers to talk about advance
care planning. Contact: Shawn LaFrance, M.S., M.P.H., Vice President, Foun-
dation for Healthy Communities, 125 Airport Road, Concord, NH 03301.
Phone: (603) 225-0900. E-mail: slafrance@nhha.org. Web: www.fhconline.org.
New Jersey Comfort Care Coalition
Housed at New Jersey Health Decisions, the coalition has 30 participating or-
ganizations. The group has created interdisciplinary training for health pro-
fessions students and clinicians, new models to ﬁnance care, and a compre-
hensive campaign for public education and dialogue. The coalition recently
co-sponsored an intensive ethics conference with the New York Citizens’ Com-
mittee on Health Decisions, “In the Wake of Devastation: Dealing with Trauma,
Stress and Grief.” Contact: Stephanie G. Levy, Project Manager, New Jersey
Health Decisions, 13 Rockland Terrace, 1st Floor, Verona, NJ 07044. Phone:
(973) 857-5552. E-mail: stevilevy@aol.com.
North Carolina: The Carolinas Center for Hospice and
End-of-Life Care
The Carolinas Center has developed an infrastructure for statewide community
outreach that includes 35 local end-of-life care coalitions, 30 advance care
planning (ACP) instructors, and numerous statewide organizations to which
it provides consultation, networking and resources. Certiﬁed ACP instructors
have trained more than 450 health care professionals and community
leaders and distributed more than 20,000 ACP educational materials to help
consumers plan and communicate their wishes. A comprehensive Web site in-
cludes an end-of-life resource locator as well as online resources. A quality
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improvement project provides intensive education in pain management and end-
of-life care for staff in nursing homes. Contact: Gwynn Sullivan, R.N., M.S.N.,
Director of NC Community Outreach, The Carolinas Center, 2400 Weston
Parkway, P.O. Box 4449, Cary, NC 27519-4449. Phone: (919) 677-4117. E-mail:
gsullivan@carolinasendoﬂifecare.org. Web: www.carolinasendoﬂifecare.org.
North Dakota Matters of Life & Death Project
The Matters of Life & Death Project is a coalition of more than 50 organizations,
individuals and agencies in North Dakota working together on initiatives to
improve care at the end of life. Initiated in 1999, the project has implemented
interdisciplinary strategies in four key areas: professional education; services
and access to end-of-life care; public education; and advance care planning.
The project strives to create a more supportive environment that encourages
advance planning and provides early access to excellent care that addresses the
physical, psychological, spiritual and social needs of dying people and their
family. Contact: Bruce Levi, J.D., Project Director/Director of Legal Affairs,
North Dakota Medical Association, Box 1198, Bismarck, ND 58502. Phone:
(701) 223-9475. E-mail: blevi@ndmed.com. Web: www.ndmed.com.
Oklahoma Alliance for Better Care of the Dying
The alliance (OkABCD) has collected data from focus groups and town hall
meetings in several cities to document citizens’ experiences with end-of-life
care. OkABCD focuses on several key initiatives: (1) a public awareness
campaign that encourages older adults to talk with their loved ones and
physicians about their care preferences; (2) a speaker’s bureau that shares in-
formation on various end-of-life issues; (3) interdisciplinary workshops that
meet the professional education needs of physicians, nurses, nursing home ad-
ministrators, social workers, physician assistants, pharmacists, emergency
medical technicians, clergy and other concerned professionals; and (4)
meetings with directors of nursing homes, state regulators and surveyors to
resolve misunderstandings about hospice care in nursing homes, pain as-
sessment and other regulatory topics. Contact: Linda Edmondson, L.C.S.W.,
Executive Director, Oklahoma Association for Healthcare Ethics, 228 Robert S.
Kerr Boulevard, Suite 300, Oklahoma City, OK 73102-5201. Phone: (405) 236-
2280. E-mail: leokabcd@swbell.net.
Rhode Island: Improving Quality of Care for
Our Most Vulnerable Population
The Rhode Island program has experienced success in two key areas: advance
care planning and pain management. The Attorney General’s ofﬁce has put to-
gether a legal steering committee to examine current advance directive forms
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and explore standardization of their use in long-term care facilities and by
emergency medical health providers. The Pain Management/Public Policy/
Professional Education task force has supported a Brown/Rhode Island Con-
tinuous Quality Improvement Pain Management project, which is collecting
data from participating nursing homes. The Rhode Island Department of Health
initiated a statewide “Pain Awareness Week” in cooperation with the Attorney
General’s Health Care Advocate. Contact: Debra DeSilva, Project Coordinator,
Brown University, Box G-H Hemisphere Building, LL, 167 Angell Street, Prov-
idence, RI 02912. Phone: (401) 863-9628. E-mail: debra_desilva@brown.edu.
Web: www.chcr.brown.edu/commstate/homepagewithframes.htm.
Tennesseans End-of-Life Partners
The coalition (TELP) focuses on deﬁning and promoting best practices in end-
of-life care. TELP has implemented a statewide survey of physicians regarding
their perceived competencies and concerns in providing optimal end-of-life
care. In collaboration with the State Health Department, TELP worked with the
Board for Licensing Healthcare Facilities to amend its Rules & Regulations to
address end-of-life care and pain management for all licensed health care fa-
cilities, including hospitals, nursing homes, ambulatory surgery, residential
hospice and home care organizations. The group also conducted training
sessions on pain management and end-of-life care at the State Surveyors an-
nual meeting. Contact: Norma Lindsey, TELP, c/o St. Mary’s Medical Center, 900
East Oak Hill Avenue, Tower 2, Knoxville, TN 37917. Phone: (865) 545-7166.
E-mail: nlindsey@stmaryshealth.com.
Texas Partnership for End-of-Life Care
The Texas partnership (TxPEC) has launched 12 local and regional partnerships
serving Texans in 20 cities. The organization regularly offers educational opportu-
nities to health care and social service professionals as well as the faith community.
It has sponsored EPEC training, developed a clergy project, held conferences and
conducted consumer polls on end-of-life attitudes in ﬁve communities. Regional
task forces are addressing such issues as service coordination in nursing homes,
grief and bereavement training, bilingual staff recruitment, and development of
residential hospice facilities. The partnership is planning a conference in 2004 to
promote diversity and cultural exchange. Contact: Suze Miller, Executive Director,
TxPEC, 3710 Cedar Street, Box 22, Suite 275, Austin, TX 78705. Phone: (512)
453-9600. E-mail: info@txpec.org. Web: www.txpec.org.
Utah Partnership to Improve End-of-Life Care
The Utah partnership has four major goals: (1) to increase public awareness of
end-of-life issues; (2) to improve professional practices; (3) to provide educa-
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tional assistance on policy that affects end-of-life care; and (4) to conduct
meetings that bring together care providers and the loved ones of people who
have died. The partnership’s Web site is widely used by consumers seeking
information on end-of-life care. The group also is participating in an ad
Physician Orders for Life-
hoc committee that is developing a form like Oregon’s POLST (Physician
Sustaining Treatment
Orders for Life-Sustaining Treatment). Future efforts may include promoting
(POLST) is a one-page,
palliative care for children and involving the clergy. Contacts: Maureen Henry
two-sided document de-
or Kim Segal, Co-Project Managers, HealthInsight, 348 E. 4500 South, Suite
signed to help health care
providers honor the end-
300, Salt Lake City, UT 84107. Phone: (801) 892-0155. E-mail: mhenry@
of-life treatment desires
healthinsight.org. Web: www.carefordying.org.
of their patients. The
document is a physician
Washington State End-of-Life Consensus Coalition
order form that follows
The Washington coalition has hosted numerous conferences and workshops
patient wishes and
across the state and supported the creation of multidisciplinary clerkships. Cur-
treatment intentions and
rently the group is working in three areas: (1) to create an interdisciplinary con-
thereby enhances the ap-
propriateness and quality
tinuing medical education pilot program for the Washington State Medical As-
of patient care. It is not
sociation’s annual meeting, which will focus on communication and symptom
intended to be completed
management to provide comfort to patients and their families; (2) to help create
by the patient or the
a pain management resource for health care professionals; and (3) to host an
patient’s family. It is not
end-of-life coalition meeting in 2003. The coalition engages policy leaders in
an advance directive,
addressing the regulatory barriers to honoring advance directives. Contact:
which in Oregon must
follow statutory wording.
Graham Short, Communications Coordinator, Washington State Medical Asso-
ciation, 2033 Sixth Avenue, Suite 1100, Seattle, WA 98122. Phone: (206) 441-
The POLST form is easily
9762. E-mail: gfs@wsma.org.
recognized because of its
bright pink color and
West Virginia Initiative to Improve End-of-Life Care
standardized format. It
The West Virginia program uses a multidisciplinary approach and strong public
uses language to convey
participation to improve end-of-life care for all state residents. Current activities
physician orders about
speciﬁc medical treatment
include a plan to initiate a series of community discussions, “Dispelling the
that is understandable to
Myths about Pain,” to be held with civic and community groups in senior
nursing home staff, home
centers, churches, public libraries and other public locations. A minority issues
health/hospice personnel,
task force has begun to work on planning a possible conference for African-
covering physicians,
American clergy. The group is also seeking funds to ﬁlm a documentary about
emergency medical
the end-of-life care experiences of African Americans in West Virginia. The
services and loved ones of
the patient.
policy task force is working on minor changes to the DNR order and to the West
Virginia Health Care Decisions Act that would include wording about the use
of the POLST form. The palliative care nurse-educators group continues to
provide palliative care education and consultation with nursing homes and
rural hospitals throughout the state. The professional education task force
hopes to develop a social work track at the West Virginia University School of
Social Work Summer Institute on Aging. Contact: Jim Keresztury, L.C.S.W.,
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A.C.S.W., M.B.A., Project Manager/Associate Director, West Virginia University
Center for Health Ethics and Law, 1195 Health Sciences North, P.O. Box
9022, Morgantown, WV 26506-9022. Phone: (304) 293-7618. E-mail:
jkeresztury@hsc.wvu.edu. Web: www.wvinitiative.org.
Community-State Partnerships to Improve End-of-Life Care
National Program Ofﬁce, Midwest Bioethics Center, 1021 Jefferson Street,
Kansas City, MO 64105. Phone: (816) 221-1100. Contacts: Myra Christo-
pher, National Program Director. E-mail: myra@midbio.org. Jacqueline Talman,
M.S.W., L.C.S.W., Deputy Director. E-mail: jtalman@midbio.org. Web:
www.midbio.org.
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Appendix

Appendix
METHODOLOGY
The idea for this report came out of a 2001 discussion among the end-of-life
care experts who serve as conveners of Last Acts’ 11 committees. Jim Towey, at
that time co-convener of the Last Acts Family Committee, volunteered to steer
the process to produce it. Jim consulted and received comments and sug-
gestions from many experts in the end-of-life ﬁeld who helped develop initial
measures for rating the states. They recommended that the criteria be quan-
tiﬁable, and that each should represent an important aspect of end-of-life care.
Staff did an initial search for data sources and presented draft measures and po-
tential data to the Last Acts committee conveners. (Listings of both groups
appear on pages 86 and 87.) Based on their suggestions and the advice of ad-
ditional experts and reviewers, staff revised criteria and, in some cases, located
new data sources.
The data ultimately used, although accurate and as up-to-date as possible, do
not adjust for variations in public programs and morbidity factors, nor can they
show very real local differences in care within states. Data were obtained pri-
marily from publicly available sources (e.g., Web sites, published books and
special projects).
The following sections describe the data sources and special considerations for
each measure used.

Quality of state advance directive laws,
2002
Avoids mandatory
forms or language
Encourages single,
(in proxy or
comprehensive
combined
1 STATE ADVANCE
State
AD statute
proxy/living will)
DIRECTIVE POLICIES
Alabama
•
The ratings are based on an
Alaska
analysis done by Charles
Arizona
•
•
Sabatino, J.D., in 2002 that
Arkansas
•
looked at six aspects of state
California
•
•
Colorado
•
statutes. We placed each state
Connecticut
•
•
in one of ﬁve possible groups
Delaware
•
•
according to its overall score
District of Columbia
•
(range of possible scores was
Florida
•
•
0.0–5.0).
Georgia
•
Hawaii
•
•
*MA, MI & NY have only proxy
Idaho
•
statutes but are treated as compre-
Illinois
•
hensive statutes because health care
Indiana
instructions may be included in any
Iowa
•
directive.
Kansas
**As MA, MI & NY have only proxy
Kentucky
•
statutes, precedence to agent’s
Louisiana
•
authority is inherent in the statutory
Maine
•
•
structure.
Maryland
•
•
Massachusetts
•*
•
Michigan
•*
•
Minnesota
•
•
Mississippi
•
•
Missouri
•
Montana
•
Nebraska
•
Nevada
New Hampshire
New Jersey
•
•
New Mexico
•
•
New York
•*
•
North Carolina
•
North Dakota
•
Ohio
Oklahoma
•
Oregon
•
Pennsylvania
•
Rhode Island
•
South Carolina
South Dakota
•
Source: American Bar Association,
Tennessee
•
Commission on Law and Aging. State
Health Decisions Legislative Update, 2002,
Texas
www.abanet.org; Sabatino, CP. “The Legal
Utah
and Functional Status of the Medical
Vermont
Proxy: Suggestions for Statutory Reform.”
Virginia
•
•
Journal of Law, Medicine & Ethics, 27:
Washington
•
552–68, 1999; Sabatino, CP, “Survey of
West Virginia
•
State EMS-DNR Laws and Protocols.”
Wisconsin
Journal of Law, Medicine & Ethics, 27:
Wyoming
297–315, 1999.
•
(70)

Statute authorizes
AD statute gives
default surrogates
precedence to
for health care
agent’s authority
decisions,
Default surrogates
Has statewide
TOTAL
or most recent
including life
include
EMS-DNR
Shaded columns
directive over LW
support
“close friend”
protocol in place
count 1⁄2 point
•
•
•
3.5
•
1.0
•
•
3.5
•
•
3.0
•
3.0
•
•
•
3.5
•
•
4.0
•
•
•
•
5.0
•
•
3.0
•
•
•
•
5.0
•
•
•
3.5
•
•
•
4.5
•
•
3.0
•
•
•
•
4.0
•
•
2.0
•
•
2.5
•
1.0
•
•
3.0
•
•
3.0
•
•
•
•
5.0
•
•
•
4.5
•**
•
3.5
•**
•
4.5
•
•
3.5
•
•
3.5
•
•
2.5
•
•
3.0
•
1.5
•
•
2.0
•
•
1.5
•
3.0
•
•
•
•
5.0
•**
•
3.5
•
2.0
•
•
•
3.0
•
•
2.0
•
2.0
•
•
•
3.5
1.0
•
•
2.5
•
•
2.0
•
•
2.5
•
2.0
•
•
•
2.5
•
•
•
2.5
•
0.5
•
•
4.0
•
•
3.0
•
•
•
•
4.0
•
•
1.5
•
•
3.0
(71)

Deaths at home, in a hospital, and in a
nursing home, by state, 1997
Deaths at home
2 LOCATION OF DEATH
State
in 1997 (%)
Data are from 1997 and were
Alabama
29.2
analyzed by the Brown Uni-
Alaska
35.8
versity Center for Gerontology
Arizona
25.5
and Health Care Research.69
Arkansas
25.0
The center used data from the
California
26.9
Colorado
29.0
Mortality Files compiled by the
Connecticut
21.3
National Center for Health
Delaware
27.7
Statistics to demonstrate
District of Columbia
14.7
where chronically ill Americans
Florida
27.4
died in 1997. We report per-
Georgia
19.3
centages of deaths occurring
Hawaii
22.7
at home, in a hospital, and in
Idaho
32.3
a nursing home.
Illinois
19.5
Indiana
23.1
Iowa
20.9
Kansas
23.2
Kentucky
24.6
Louisiana
21.0
Maine
23.8
Maryland
26.7
Massachusetts
22.4
Michigan
25.6
Minnesota
23.7
Mississippi
21.5
Missouri
23.2
Montana
27.7
Nebraska
18.8
Nevada
31.7
New Hampshire
23.6
New Jersey
26.9
New Mexico
32.1
New York
21.2
North Carolina
23.9
North Dakota
18.4
Ohio
23.1
Oklahoma
24.1
Oregon
35.1
Pennsylvania
23.2
Rhode Island
20.9
South Carolina
25.1
South Dakota
19.3
Tennessee
19.8
Texas
23.3
Utah
34.1
Vermont
29.6
Virginia
24.9
Washington
30.0
Source: Brown University Center for
West Virginia
26.5
Gerontology and Health Care Research,
Wisconsin
24.5
www.chcr.brown.edu/dying/
forresearcherssod.htm.
Wyoming
26.6
(72)

Deaths in a hospital
Deaths in a nursing home
in 1997 (%)
in 1997 (%)
56.5
14.3
43.5
20.7
42.8
31.7
55.1
19.9
48.4
24.7
40.6
30.4
48.0
30.7
46.4
25.9
71.9
13.4
51.7
20.9
63.7
17.0
64.7
12.6
37.0
30.7
57.7
22.9
47.4
29.5
48.6
30.4
49.3
27.6
55.5
19.9
65.1
13.9
43.0
33.0
49.4
23.9
48.8
28.8
49.7
24.8
38.6
37.7
65.8
12.7
49.0
27.9
41.6
30.7
45.8
35.4
51.8
16.5
48.5
27.9
56.9
16.2
46.7
21.3
61.8
17.0
53.3
22.8
48.3
33.2
48.8
28.1
53.4
22.5
32.5
32.4
49.1
27.7
45.8
33.3
56.5
18.4
45.8
34.9
61.5
18.7
57.3
19.4
38.9
27.0
38.4
31.9
54.0
21.0
35.7
34.3
58.0
15.5
40.3
35.2
42.8
30.6
(73)

People over 65 who used hospice in the
last year of life, by state, 2000
Deaths with
3 HOSPICE USE
State
hospice stays (%)
The ﬁrst measure represents
Alabama
23.5
the percentage of Medicare-
Alaska
4.9
eligible non-HMO patients
Arizona
42.0
who were receiving hospice
Arkansas
18.8
California
24.2
care at the time of their death.
Colorado
36.8
The second measure is the
Connecticut
19.4
median length of stay in
Delaware
24.4
hospice.
District of Columbia
13.8
Data for the hospice care
Florida
35.3
measure are based on a
Georgia
24.2
special analysis by the research
Hawaii
19.1
team for the Dartmouth Atlas
Idaho
20.8
Illinois
25.0
of Health Care Working Group
Indiana
18.8
and are for the year 2000.
Iowa
23.1
The length of stay data are
Kansas
22.5
from 2001 and were obtained
Kentucky
20.8
from the National Hospice and
Louisiana
19.7
Palliative Care Organization’s
Maine
9.1
membership database. The
Maryland
20.5
data included in the length of
Massachusetts
18.3
Michigan
28.2
stay measure are from states
Minnesota
21.8
with ﬁve or more reporting
Mississippi
17.6
hospice agencies.
Missouri
22.0
Montana
17.5
Nebraska
20.0
Nevada
28.8
New Hampshire
17.9
New Jersey
18.7
New Mexico
29.6
New York
15.8
North Carolina
18.9
North Dakota
18.1
Ohio
26.9
Oklahoma
28.4
Oregon
31.1
Pennsylvania
21.2
Rhode Island
18.3
South Carolina
19.3
South Dakota
12.8
Tennessee
15.4
Texas
28.4
Utah
24.9
Vermont
14.9
Virginia
18.1
Washington
24.1
West Virginia
16.6
Source: Special analysis by the research
Wisconsin
19.5
team for the Dartmouth Atlas of Health
Wyoming
14.5
Care, www.dartmouthatlas.org.
(74)

Median number of days in hospice,
by state, 2001
Median length of
State
hospice stay
Alabama
42.9
Alaska
—
Arizona
27.7
Arkansas
26.0
California
23.6
Colorado
22.5
Connecticut
21.5
Delaware
—
District of Columbia
—
Florida
18.2
Georgia
25.4
Hawaii
26.6
Idaho
25.1
Illinois
18.8
Indiana
26.7
Iowa
27.9
Kansas
25.4
Kentucky
27.5
Louisiana
33.2
Maine
27.4
Maryland
20.5
Massachusetts
18.1
Michigan
26.2
Minnesota
23.2
Mississippi
37.0
Missouri
24.1
Montana
25.2
Nebraska
25.4
Nevada
—
New Hampshire
20.8
New Jersey
21.1
New Mexico
35.2
New York
18.9
North Carolina
32.2
North Dakota
20.9
Ohio
17.5
Oklahoma
25.9
Oregon
23.9
Pennsylvania
24.3
Rhode Island
13.7
South Carolina
34.1
South Dakota
26.8
Tennessee
23.6
Texas
25.0
Utah
19.3
Vermont
27.0
Virginia
24.9
Washington
23.6
West Virginia
29.4
Wisconsin
18.0
Source: National Hospice and Palliative
Wyoming
15.2
Care Organization.
(75)

Hospitals reporting pain management
programs, hospice programs, and
palliative care programs, by state, 2000
Number of
4 HOSPITAL END-OF-LIFE
State
hospitals reporting
CARE SERVICES
Alabama
78
These measures show the
Alaska
16
percentage of hospitals self-
Arizona
50
reporting end-of-life services—
Arkansas
91
speciﬁcally deﬁned as pain
California
244
Colorado
64
management, hospice or a
Connecticut
40
palliative care program. Data
Delaware
6
on hospitals that offer these
District of Columbia
11
services are from the 2000
Florida
201
American Hospital Association
Georgia
171
annual survey of all U.S. hos-
Hawaii
20
pitals; the response rate for
Idaho
36
this survey in 2000 was 84
Illinois
200
Indiana
106
percent.70 Each service was
Iowa
125
considered separately.
Kansas
144
Kentucky
99
Louisiana
123
Maine
40
Maryland
62
Massachusetts
86
Michigan
149
Minnesota
116
Mississippi
102
Missouri
143
Montana
58
Nebraska
80
Nevada
19
New Hampshire
29
New Jersey
75
New Mexico
41
New York
193
North Carolina
112
North Dakota
34
Ohio
158
Oklahoma
111
Oregon
56
Pennsylvania
198
Rhode Island
16
South Carolina
77
South Dakota
56
Tennessee
100
Texas
476
Utah
41
Vermont
14
Virginia
90
Washington
70
West Virginia
66
Source: Hospital Statistics. American
Wisconsin
137
Hospital Association, 2000.
Wyoming
26
(76)

Hospitals with pain
Hospitals with
Hospitals with
management program (%)
hospice program (%)
palliative care program (%)
41.0
16.7
6.4
37.5
6.3
18.8
46.0
20.0
12.0
33.0
25.3
7.7
42.6
20.5
13.1
50.0
20.3
17.2
62.5
57.5
32.5
66.7
16.7
16.7
72.7
9.1
54.5
53.7
17.9
12.9
40.4
14.6
10.5
40.0
5.0
10.0
38.9
30.6
8.3
53.0
32.0
17.5
54.7
34.9
21.7
32.0
44.8
16.0
20.1
14.6
16.0
35.4
15.2
11.1
30.9
10.6
10.6
45.0
17.5
15.0
59.7
19.4
25.8
57.0
20.9
23.3
53.0
30.2
20.1
25.0
39.7
8.6
4.9
12.7
0.0
46.9
27.3
2.1
24.1
34.5
15.5
23.8
30.0
5.0
10.5
5.3
5.3
62.1
34.5
34.5
68.0
25.3
24.0
24.4
19.5
14.6
61.1
19.2
20.2
50.0
24.1
14.3
32.4
38.2
5.9
53.8
29.1
22.8
27.0
17.1
10.8
41.1
39.3
19.6
57.6
30.3
21.7
56.3
6.3
6.3
42.9
14.3
1.3
28.6
39.3
5.4
35.0
21.0
12.0
30.9
10.5
9.2
46.3
19.5
14.6
42.9
35.7
42.9
56.7
27.8
17.8
40.0
22.9
17.1
28.8
16.7
18.2
58.4
15.3
1.5
19.2
42.3
11.5
(77)

People over 65 with 7 or more ICU
days during the last 6 months of life,
by state, 2000
Beneﬁciaries
ICU/CCU stay
Decedents with
5 CARE IN ICUs AT THE
with an ICU or
day rate per
7 or more ICU/
State
CCU stay (%)
decedent
CCU days (%)
END OF LIFE
Alabama
32.7
2.5
11.5
Data are from 2000 and were
Alaska
29.3
2.4
11.7
a special analysis of state-level
Arizona
22.2
1.7
8.3
data prepared by the Dart-
Arkansas
31.2
2.2
9.9
mouth Atlas of Health Care
California
23.8
2.3
10.8
Working Group.71 The group
Colorado
17.3
1.0
4.7
Connecticut
25.2
2.0
9.0
established the percentage of
Delaware
37.0
3.2
15.7
Medicare beneﬁciaries who
District of Columbia
32.0
2.9
12.8
had had an ICU or CCU hospi-
Florida
32.2
3.0
14.9
talization during their last six
Georgia
32.7
2.5
12.0
months of life, and the length
Hawaii
18.1
1.3
5.8
of the stay on a day rate basis
Idaho
23.6
1.4
6.6
per beneﬁciary who had died.
Illinois
33.8
2.8
13.7
Finally, the ICU days were
Indiana
34.3
2.7
13.3
Iowa
25.0
1.6
7.5
totaled across all hospital
Kansas
27.3
1.9
9.0
admissions during the last six
Kentucky
33.1
2.6
12.7
months of life, based on
Louisiana
30.2
2.3
11.3
Medicare claims data. Note
Maine
25.5
1.7
7.2
that states received a grade for
Maryland
31.5
2.7
12.3
the third set of data only.
Massachusetts
22.0
1.6
7.0
Michigan
33.3
2.6
12.5
Minnesota
21.3
1.4
6.2
Mississippi
31.1
2.4
11.4
Missouri
31.0
2.5
11.7
Montana
25.4
1.5
6.7
Nebraska
26.2
2.1
9.3
Nevada
25.3
2.1
10.7
New Hampshire
21.6
1.4
5.9
New Jersey
37.2
3.8
17.3
New Mexico
25.3
1.7
8.3
New York
26.0
2.3
10.2
North Carolina
33.9
2.7
12.5
North Dakota
22.2
1.3
5.5
Ohio
30.9
2.5
12.1
Oklahoma
27.5
1.9
9.0
Oregon
15.2
0.8
3.4
Pennsylvania
29.3
2.4
11.5
Rhode Island
21.2
1.8
8.0
South Carolina
37.1
3.2
15.6
South Dakota
24.1
1.7
7.9
Tennessee
35.4
3.1
14.9
Texas
33.2
2.7
13.6
Utah
24.2
1.5
6.8
Vermont
23.7
1.5
6.3
Virginia
33.8
2.9
13.5
Washington
24.0
1.5
7.0
West Virginia
31.6
2.6
12.5
Source: Special analysis by the research
team for the Dartmouth Atlas of Health Care,
Wisconsin
24.9
1.6
6.9
www.dartmouthatlas.org.
Wyoming
25.9
1.8
8.4
(78)

Nursing home residents in persistent
pain, by state, 1999
Patients in persistent
pain in
6 PAIN AMONG NURSING
State
nursing homes (%)
HOME RESIDENTS
Alabama
37.3
Alaska
45.8
Data are from 1999 and were
Arizona
46.6
analyzed by the Brown Uni-
Arkansas
41.9
versity Center for Gerontology
California
44.4
and Health Care Research.72
Colorado
47.2
The center analyzed data from
Connecticut
38.1
the Minimum Data Set, the
Delaware
41.7
nursing home resident as-
District of Columbia
42.9
Florida
42.5
sessment instrument that all
Georgia
44.4
nursing homes are required to
Hawaii
33.3
complete. Rates of persistent
Idaho
54.9
severe pain were calculated by
Illinois
41.9
using the number of residents
Indiana
42.1
reported to be in moderate
Iowa
37.2
daily or episodic excruciating
Kansas
45.4
Kentucky
40.6
pain at a ﬁrst assessment and
Louisiana
43.0
again at a second assessment
Maine
41.3
60 to 180 days later, divided
Maryland
38.5
by the total number of people
Massachusetts
38.1
reporting pain at the ﬁrst
Michigan
39.2
assessment, to achieve the
Minnesota
39.7
percentages shown here.
Mississippi
38.0
Missouri
41.0
Montana
48.4
Nebraska
36.8
Nevada
51.1
New Hampshire
41.9
New Jersey
37.2
New Mexico
45.1
New York
37.1
North Carolina
40.4
North Dakota
43.8
Ohio
44.4
Oklahoma
42.3
Oregon
39.6
Pennsylvania
38.8
Rhode Island
41.4
South Carolina
37.7
South Dakota
45.3
Tennessee
42.6
Texas
42.4
Utah
51.7
Vermont
44.2
Virginia
39.1
Washington
44.3
West Virginia
46.9
Source: Brown University Center for Gerontology
Wisconsin
40.8
and Health Care Research, www.chcr.brown.edu/
Wyoming
43.1
dying/forresearcherspsp.htm.
(79)

Strength of state pain policies, 2001
State has a
comprehensive
Policy explicitly
pain management
addresses needs
policy (1 point =
of terminally ill
few provisions, 2 =
7 STATE PAIN POLICIES
State
patients (1 point) some, 3 = most/all)
We developed a scoring
Alabama
1
3
system that was used to score
Alaska
0
0
the data in Achieving Balance
Arizona
0
2
in Federal & State Pain Policy,
Arkansas
—
—
prepared by the Pain and
California
1
2
Colorado
1
0
Policy Studies Group of the
Connecticut
0
0
University of Wisconsin.73 The
Delaware
0
0
range of possible scores was
District of Columbia
0
0
–3 to +9. (In the chart at right
Florida
1
3
0 = no policies found; doesn’t
Georgia
0
0
apply.) Note that while this
Hawaii
0
0
criterion is a measure of the
Idaho
0
0
pain policy environment in a
Illinois
0
0
Indiana
0
0
state, it is not a measure of
Iowa
0
1
the actual practice of pain
Kansas
1
3
management.
Kentucky
2
3
Louisiana
0
1
Maine
1
2
Maryland
1
1
Massachusetts
1
0
Michigan
1
0
Minnesota
1
3
Mississippi
1
0
Missouri
1
3
Montana
0
0
Nebraska
1
3
Nevada
1
3
New Hampshire
1
2
New Jersey
1
0
New Mexico
0
0
New York
1
1
North Carolina
1
2
North Dakota
0
0
Ohio
0
0
Oklahoma
0
1
Oregon
1
0
Pennsylvania
0
3
Rhode Island
1
2
South Carolina
0
3
Source: Based on Achieving Balance in
South Dakota
0
3
Federal & State Pain Policy, July 2000, and
Tennessee
0
2
updated in the Annual Review of State
Pain Policies 2000 (published February
Texas
0
0
2001) and Annual Review of State Pain
Utah
1
3
Policies 2001 (published February 2002)
Vermont
0
0
from the Pain and Policy Studies Group
Virginia
0
0
of the University of Wisconsin’s Compre-
Washington
1
2
hensive Cancer Center, Madison, Wiscon-
West Virginia
1
1
sin. More recent information may be
available at the group’s Web site:
Wisconsin
0
0
www.medsch.wisc.edu/painpolicy.
Wyoming
0
0
(80)

Includes “dis-
couraging” pro-
Reassures
visions (minus
physicians on their Describes the steps
1 to 3 points, with ability to prescribe
in good medical
Expresses concern
–1 few, –2 some,
opioids for pain
practice for pain
about the under-
–3 signiﬁcant
management
management
treatment of pain
restrictions)
(2 points)
(2 points)
(1 point)
TOTAL
0
2
2
0
8
–1
0
0
0
–1
–1
2
2
0
5
–1
2
—
—
1
–3
2
2
1
5
–1
2
2
1
5
–1
0
0
0
–1
–1
0
0
0
–1
0
0
0
0
0
– 1
2
2
1
8
– 1
0
2
0
1
– 1
0
0
0
–1
– 1
0
0
0
–1
–1
0
0
0
–1
–2
0
0
0
–2
–1
0
2
0
2
0
2
2
1
9
–2
2
2
0
7
–2
0
0
0
–1
0
2
2
0
7
0
2
2
1
7
–1
0
0
1
1
–2
2
0
0
1
0
2
0
0
6
–1
0
0
1
1
0
2
0
0
6
–1
2
2
1
4
0
2
2
1
9
–1
2
2
0
7
–1
0
2
0
4
–2
0
2
0
1
0
2
2
0
4
–3
0
0
0
–1
0
2
2
1
8
0
2
0
0
2
0
0
0
0
0
0
2
2
0
5
–1
2
0
1
3
–1
2
2
1
7
–2
2
2
1
6
–2
2
0
1
4
0
0
0
0
3
–3
2
2
0
3
–2
2
0
0
0
–1
2
2
1
8
–2
0
2
1
1
0
0
2
0
2
0
2
2
1
8
0
2
2
1
7
–1
0
0
0
–1
0
2
2
0
4
(81)

Percentage of general primary care and
primary care subspecialty physicians who
are certiﬁed in palliative medicine, 2000
8 PALLIATIVE CARE-
State
Total number of physicians
CERTIFIED PHYSICIANS
Alabama
9,887
AND NURSES
Alaska
1,362
This measure approximates
Arizona
12,250
the availability of palliative
Arkansas
5,711
care-certiﬁed physicians and
California
97,213
nurses using the percentage of
Colorado
11,692
Connecticut
13,279
clinicians who are certiﬁed in
Delaware
2,099
palliative care. Data on the
District of Columbia
4,488
number of palliative care-
Florida
46,013
certiﬁed physicians and nurses
Georgia
19,324
are from the American Board
Hawaii
3,887
of Hospice and Palliative
Idaho
2,370
Medicine’s Web site74 and the
Illinois
35,943
Hospice and Palliative Nursing
Indiana
13,461
Iowa
5,927
Association’s Web site, respec-
Kansas
6,486
tively.75 Data on the number
Kentucky
9,468
of primary care physicians are
Louisiana
12,207
for 2000 and are from the
Maine
3,598
American Medical Associa-
Maryland
23,449
tion.76 Data on the number of
Massachusetts
28,886
registered nurses are estimated
Michigan
25,209
Minnesota
14,257
for the year 2000 and are
Mississippi
5,399
from the U.S. Department of
Missouri
14,061
Health and Human Services,
Montana
2,188
Health Resources and Services
Nebraska
4,300
Administration.77
Nevada
4,025
While this measure approx-
New Hampshire
3,438s
imates the percentage of pal-
New Jersey
27,462
liative care-certiﬁed physicians
New Mexico
4,565
New York
78,524
and nurses statewide, it does
North Carolina
21,118
not capture the actual avail-
North Dakota
1,603
ability at local levels.
Ohio
30,229
Oklahoma
6,565
Oregon
9,312
Pennsylvania
39,603
Rhode Island
3,814
South Carolina
9,689
South Dakota
1,708
Tennessee
15,360
Texas
46,904
Utah
5,041
Vermont
2,318
Source: American Board of Hospice and
Virginia
20,362
Palliative Medicine; www.abhpm.org.
Washington
16,693
American Medical Association. Physician
West Virginia
4,442
Characteristics and Distribution in the US,
2002–2003 Edition (Chicago: American
Wisconsin
13,954
Medical Association Press, 2002).
Wyoming
1,013
(82)

Total primary care
Physicians certiﬁed by the
plus primary care
American Board of Hospice
Certiﬁed doctors as % of total primary
subspecialty physicians
and Palliative Medicine
care + subspecialty physicians
4,264
9
0.21
634
1
0.16
4,560
17
0.37
2,476
5
0.20
37,624
96
0.26
4,672
16
0.34
5,207
12
0.23
833
3
0.36
1,679
5
0.30
16,545
69
0.42
8,064
11
0.14
1,600
5
0.31
926
0
0.00
15,426
46
0.30
5,627
11
0.20
2,359
9
0.38
2,653
12
0.45
3,884
11
0.28
4,908
11
0.22
1,408
11
0.78
9,233
28
0.30
11,092
20
0.18
10,353
44
0.43
6,217
18
0.29
2,236
5
0.22
5,698
14
0.25
828
8
0.97
1,863
3
0.16
1,592
3
0.19
1,334
12
0.90
11,498
21
0.18
1,874
17
0.91
31,414
72
0.23
8,604
16
0.19
717
1
0.14
12,405
51
0.41
2,690
11
0.41
3,611
13
0.36
15,357
29
0.19
1,576
4
0.25
4,001
7
0.18
748
2
0.27
6,453
17
0.26
19,096
64
0.34
1,944
8
0.41
939
6
0.64
8,382
14
0.17
6,688
20
0.30
1,856
6
0.32
5,809
21
0.36
420
2
0.48
(83)

Percentage of full-time-equivalent
nurses (estimated) who are certiﬁed in
palliative care, 2000
Estimated full-time-equivalent
State
registered nurses
Alabama
30,987
Alaska
4,264
Arizona
28,575
Arkansas
17,147
California
154,002
Colorado
26,556
Connecticut
26,407
Delaware
6,024
District of Columbia
8,877
Florida
112,735
Georgia
49,746
Hawaii
7,516
Idaho
6,765
Illinois
87,457
Indiana
38,780
Iowa
25,897
Kansas
21,204
Kentucky
30,064
Louisiana
34,510
Maine
10,936
Maryland
38,291
Massachusetts
59,884
Michigan
66,452
Minnesota
37,357
Mississippi
19,652
Missouri
47,337
Montana
6,327
Nebraska
13,826
Nevada
9,320
New Hampshire
9,446
New Jersey
56,868
New Mexico
10,295
New York
136,663
North Carolina
62,427
North Dakota
5,779
Ohio
84,188
Oklahoma
19,684
Oregon
21,498
Pennsylvania
104,392
Rhode Island
9,389
South Carolina
25,877
South Dakota
7,463
Tennessee
43,757
Texas
116,252
Utah
10,940
Vermont
4,596
Virginia
43,602
Washington
33,486
West Virginia
13,831
Wisconsin
38,498
Source: Hospice and Palliative Nursing
Wyoming
3,417
Association; www.hpna.org/. HRSA, Division
of Nursing. The National Survey of
Registered Nurses, March 2000:
Preliminary Findings February 2001.
(84)

Number of nurses certiﬁed by the Hospice
Certiﬁed nurses as % of full-time-
and Palliative Nursing Association
equivalent/registered nurses
82
0.26
6
0.14
175
0.61
44
0.26
548
0.36
94
0.35
127
0.48
42
0.70
8
0.09
676
0.60
165
0.33
24
0.32
15
0.22
288
0.33
132
0.34
124
0.48
83
0.39
208
0.69
64
0.19
60
0.55
194
0.51
202
0.34
306
0.46
168
0.45
44
0.22
79
0.17
56
0.89
60
0.43
23
0.25
79
0.84
225
0.40
53
0.51
388
0.28
222
0.36
14
0.24
546
0.65
102
0.52
112
0.52
480
0.46
15
0.16
46
0.18
9
0.12
78
0.18
442
0.38
21
0.19
52
1.13
205
0.47
155
0.46
76
0.55
192
0.50
14
0.41
(85)

CONVENERS, LAST ACTS
LAST ACTS COMMITTEES
Diversity Committee
Cherry Meier, R.N., M.S.N.
Phyllis Pennese
Long-Term Care Manager
Patient and Community Services Supervisor
National Hospice and Palliative Care Organization
Advocate Hospice
Alexandria, Virginia
Chicago, Illinois
Palliative Care Committee
Jose Lusende
Colleen Scanlon, J.D., R.N.
Multicultural Coordinator, Medical Social Services
Vice President-Advocacy
St. Vincent’s Hospital
Catholic Health Initiatives
Indianapolis, Indiana
Denver, Colorado
Evaluation and Outcomes Committee
Margaret L. Campbell, R.N.
Joel C. Cantor, Sc.D.
Nurse Practitioner
Professor of Public Policy
Palliative Care Service
Director, Center for State Health Policy
Detroit Receiving Hospital
Rutgers University
Detroit, Michigan
New Brunswick, New Jersey
Policy Strategy Committee
Joan Teno, M.D., M.S.
Peter Leibold, J.D.
Associate Director
Executive Vice President/CEO
Center for Gerontology and Health Care Research
American Health Lawyers Association
Brown University
Washington, D.C.
Providence, Rhode Island
Provider Education Committee
Family Committee
Anne Rhome, M.P.H., R.N.
Susan Blumenﬁeld, D.S.W.
Deputy Executive Director
Director, Department of Social Work Services
American Association of Colleges of Nursing
Mount Sinai Medical Center
Washington, D.C.
New York, New York
Steve Pantilat, M.D.
Financing Committee
Assistant Clinical Professor of Medicine
Theresa Varner, M.A., M.S.W.
University of California–San Francisco
Director, Public Policy Institute
San Francisco, California
AARP
Washington, D.C.
Spirituality Committee
Andy Schneider, J.D.
Christina Puchalski, M.D.
Medicaid Policy, LLC
Director
Washington, D.C.
The George Washington Institute for
Spirituality and Health
Institutional Innovation Committee
Washington, D.C.
Joseph Fins, M.D.
Frank Ostaseski
Director of Medical Ethics
Director
New York Presbyterian Hospital
Zen Hospice Project
New York, New York
San Francisco, California
J. Donald Schumacher, Psy.D.
President and CEO
Standards and Guidelines Committee
National Hospice and Palliative Care Organization
Charles Sabatino, J.D.
Alexandria, Virginia
Assistant Director
Commission on Legal Problems of the Elderly
The American Bar Association
Washington, D.C.
(86)

OTHER ADVISERS
Ira Byock, M.D.
Diane E. Meier, M.D.
Principal Investigator
Director
Life’s End Institute: Missoula Demonstration Project
Hertzberg Palliative Care Institute
Missoula, Montana
Mount Sinai School of Medicine
New York, New York
Myra Christopher
National Program Ofﬁce Director
Tina Phipps, Ph.D.
Community-State Partnerships to Improve End-of-Life Care
Director
Midwest Bioethics Center
Einstein Center for Urban Health Policy & Research
Kansas City, Missouri
Albert Einstein Healthcare Network
Philadelphia, Pennsylvania
Stephen R. Connor, Ph.D.
Vice President, Research, Development and Finance
Susan Tolle, M.D.
National Hospice and Palliative Care Organization
Director
Alexandria, Virginia
Center for Ethics in Health Care
Oregon Health & Sciences University
Elliott S. Fisher, M.D., M.P.H.
Portland, Oregon
Associate Professor of Medicine
Center for the Evaluative Clinical Sciences
Jim Towey
Dartmouth Medical School
Former President and Founder
Hanover, New Hampshire
Aging with Dignity
Washington, D.C.
Gail Hunt
President
John E. Wennberg, M.D., M.P.H.
National Alliance for Caregiving
Director
Bethesda, Maryland
Center for the Evaluation of Clinical Sciences
Dartmouth Medical School
David Joranson, M.S.S.W.
Hanover, New Hampshire
Director
Pain & Policy Studies Group
Josh Wiener, Ph.D.
University of Wisconsin Comprehensive Cancer Center
Principal Research Associate
Madison, Wisconsin
The Urban Institute
Washington, D.C.
Steve J. McPhee, M.D.
Professor of Medicine
Division of General Internal Medicine
University of California–San Francisco
San Francisco, California
(87)

Endnotes

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4. Palliative care helps gain access to needed health care providers and appropriate care settings. It . . .
• Uses many kinds of trained care providers, doctors, nurses, pharmacists, clergy, social workers and personal
caregivers.
• Makes sure, if necessary, that someone is in charge of seeing that your needs are met.
• Helps you use hospitals, home care, hospice and other services, if needed.
• Tailors options to the needs of you and your family.
5. Palliative care builds ways to provide excellent care at the end of life. It . . .
• Helps care providers learn about the best ways to care for dying people. It gives them the education and
support they need.
• Works to make sure there are good policies and laws in place.
• Seeks funding by private health insurers, health plans and government agencies.
The Five Principles are a vision for better care at the end of life. They were developed for people who are dying,
their families and their loved ones by the Last Acts Task Forces on Palliative Care and the Family. Last Acts is a
coalition of more than 900 organizations representing health care providers and consumers nationwide.
The organizations involved in Last Acts believe that everyone can make a difference in the care given to dying
people and their families. We need to work together toward a health care system that offers all Americans, when
they are dying:
• The services that meet their individual needs.
• Health plans that cover such care.
• Health care providers who are well trained in palliative care.
That would make the Five Principles of Palliative Care a reality.
WHAT YOU CAN DO
You and your family should expect to get good care at the end of life. You can improve the likelihood that you and
your family will get the care you want if you:
•
Share this document. Discuss the care you want with your family, friends, physician and other health care pro-
fessionals, and your spiritual adviser. Don’t wait until you are seriously ill!
•
Learn about your options for care. Make a list of questions to ask, to ﬁnd out whether your doctor can pro-
vide the care you want near the end of life. There is a list of sample questions on the Last Acts Web site,
www.lastacts.org.
•
Check with your local hospitals, nursing homes and home health agencies about the special services (palliative
care) they offer for dying patients and their families. Examples: Are there physicians, nurses, social workers and
spiritual counselors trained in end-of-life care who can talk to you and your family about your concerns? Do they
have experts who can manage pain and other physical discomforts? Do they offer bereavement services?
•
Find out about local hospice services.
•
Think about important decisions now. Prepare a living will and appoint someone to make decisions for you if you
are not able (a health care proxy).
•
Look into community support groups and educational programs for seriously ill patients and their families (often
offered by church groups, community centers, libraries and other organizations).
For more information about Last Acts, visit our Web site at www.lastacts.org.

Last Acts National Program Ofﬁce
1620 Eye Street, N.W.
Suite 202
Washington, D.C. 20006-4017
www.lastacts.org
Phone: (800) 341-0050
Fax: (202) 296-8352