Professional Documents
Culture Documents
A CCESS TO
Hospice Care
EXPANDING BOUNDARIES,OVERCOMING BARRIERS
BRUCE JENNINGS
TRUE RYNDES
CAROL D’ONOFRIO
M A R Y A N N B A I LY
The Project on Increasing Access to Hospice Care
I
n January 2000 The Hastings Center and the National and this analysis certainly would not have been possible
Hospice Work Group, in collaboration with the without the benefit of their insight and expertise. The
National Hospice and Palliative Care Organization, accompanying essays by task force members Ira Byock,
began a project on Increasing Access to Hospice Care, Stephen Connor (writing with Jocelia Adams), Carol
with support from The Arthur Vining Davis Foundations D’Onofrio, Linda Emanuel, Bruce Jennings, Hilde Nel-
of Jacksonville, Florida, and the Nathan Cummings Foun- son, True Ryndes, Jack Stanley, and Daniel Sulmasy dis-
dation of New York, New York. A preliminary planning cuss in more detail several key issues that surfaced during
grant from the Nathan Cummings Foundation helped to the course of our deliberations but could only be touched
launch the project with a meeting of hospice and palliative on briefly in the project report. These thoughtful essays
care leaders in September 1999. also reflect the breadth and complexity of the issues with
The work of the project was organized around the which the project as a whole had to grapple.
deliberations of a national task force of distinguished In addition to the Task Force members and other pro-
experts on hospice, palliative care, and end of life care. ject participants, this supplement and the project on
Working with numerous other experts on health policy which it is based would not have been possible without
from around the country, the task force comprised a mul- the extraordinary support and assistance of many people.
tidisciplinary group of researchers, scholars, policy ana- We would like to thank, first, colleagues at The Hastings
lysts, health care executives, and health care providers from Center for their contributions, encouragement, and sup-
medicine, nursing, philosophy, theology, the social sci- port. An equal measure of credit and gratitude should go
ences, and hospice. The task force met four times during to the members of the National Hospice Work Group.
the period 2000-2002 to review hospice policy and prac- They have been more than good colleagues and collabora-
tice, engage in discussion of the ethical and social values tors throughout the project; they have been constructively
served by hospice care, investigate the barriers to greater critical friends who have kept us on track and kept us
access and earlier access to these services, and hear presen- close to the practical realities of care for the dying and
tations on many facets of care of the dying and health pol- their families. We are indebted, too, to the board and
icy. Many of our discussions and much of our analysis executive staff of the National Hospice and Palliative Care
were oriented around the perspectives and viewpoints of Organization (NHPCO), especially former president and
several stakeholder groups, including: (1) consumer and chief executive officer Karen Davie. Stephen Connor and
patient groups, (2) health professionals, (3) the hospice Chris Cody provided invaluable advice and technical assis-
community, (4) policymakers from both the public and tance. The current president and chief executive officer of
the private sector, and (5) the community of professional NHPCO, Donald Schumacher, was also an active mem-
ethicists and other scholars in the area of health policy and ber of the task force throughout the project in his capacity
health systems research. In between project meetings, dis- as president of the Center for Hospice and Palliative Care
cussion and debate continued through a lively forum set in Cheektowaga, New York. We thank Tammy Choate
up on a special web site made possible through the sup- and her colleagues at Bondware for providing invaluable
port and technical assistance of Bondware, Inc. web-site support and services, which greatly facilitated the
This special supplement grows out of the project as a work of our project.
whole and the work of the task force. The lead article, We especially thank Ann O’Keefe of The Arthur Vin-
“Access to Hospice Care: Expanding Boundaries, Over- ing Davis Foundations and Andrea Kydd of the Nathan
coming Barriers,” written by the project co-directors, pro- Cummings Foundation for their unflagging vision,
vides a comprehensive report on the deliberations and encouragement, and support.
conclusions of the project. It is not a consensus document Finally, we gratefully acknowledge the many hours of
in the sense that each member of the task force endorses it hard work devoted to the project by our administrative
in all details, but we have done our best to present an assistants, Donna Tipps of the San Diego Hospice and
accurate and faithful reflection of the group’s thinking, Ellen McAvoy of The Hastings Center. ❧
TABLE OF CONTENTS
The Project on Increasing Access to Hospice Care inside front cover
Access to Hospice Care: Expanding Boundaries, Overcoming Barriers 3
by Bruce Jennings, True Ryndes,
Carol D’Onofrio, and Mary Ann Baily
Hospice Access and Values Project Task Force Members inside back cover
Authors
Jocelia Adams, is the founder/clinical di-
rector of The Center for Caregiver Train-
ing in San Francisco, Calif.
Mary Ann Baily is associate for health
policy and ethics at The Hastings Center.
Ira Byock, is a palliative care physician
and Research Professor of Philosophy at
the University of Montana.
Stephen Connor, is vice president for re-
search at the National Hospice and Pallia-
tive Care Organization in Alexandria, Va.
Carol D'Onofrio is professor, emerita at
the School of Public Health, University of
California, Berkeley, and has served as
consultant to many organizations, includ-
ing the National Hospice Work Group.
Linda L. Emanuel directs the Interdisci-
plinary Program for Professionalism and
Human Rights at Northwestern Universi-
ty Medical School.
Bruce Jennings is senior research scholar
at The Hastings Center and teaches at the
Yale School of Public Health.
Hilde Lindemann Nelson is an associate
professor in the department of philoso-
phy, and associate faculty at the Center
for Ethics and Humanities in the Life Sci-
ences, at Michigan State University
True Ryndes is president of the National
Hospice Work Group and vice president
of mission and policy for San Diego Hos-
ILLUSTRATION CREDITS pice.
Diedre Scherer’s fabric and thread im- John M. Stanley is professor of philoso-
phy, emeritus at Lawrence University, Ap-
ages on aging have appeared in many
pleton, Wis., and is the former president
shows throughout the United States and of American Health Decisions.
the world. She was also the recipient of
a Fine Arts Fellowship from the Open Daniel Sulmasy is Sisters of Charity
Chair in Ethics at St. Vincent’s Hospital
Society Institute’s Project on Death in
Manhattan and director of the Bioethics
America. For more information, visit Institute of New York Medical College.
www.dscherer.com.
Hospice Care
E X PA N D I N G B O U N D A R I E S , O V E R C O M I N G B A R R I E R S
BY B R U C E J E N N I N G S , T R U E R Y N D E S , C A R O L D ’ O N O F R I O ,
A N D M A R Y A N N B A I LY
T
oo many Americans approach death without ade- nanced. And it is a product of our societal failure to per-
quate medical, nursing, social, and spiritual sup- ceive the ethical and human cost of limited access to, and
port.1 In the last stage of a long struggle with in- inadequate provision of, hospice care. Although the accep-
curable, progressive diseases such as cancer, heart or lung tance and utilization of palliative and hospice care have
disease, AIDS, Alzheimer’s, Parkinson’s, or amyotrophic grown, there are still over one million Americans who die
lateral sclerosis, their pain is untreated or inadequately each year without receiving the hospice or hospice-type
controlled. Their depression or other mental health prob- services that would have benefited them and their families.
lems are not addressed. Debilitating physical symptoms These are difficult, even daunting, problems in the
rob them of energy, dignity, and sometimes the will to American health care system today. Who opposes im-
carry on. Family members who provide care are stressed, provements in palliative and end of life care in the ab-
inadequately supported by professionals, and often ren- stract? The challenge is to find new practical approaches to
dered ill themselves by the ordeal. Patients who wish to re- hospice care, building on the strengths that this movement
main in familiar surroundings at home are often forced to has developed over the years and correcting those policies
spend their final days or weeks in a hospital or nursing and practices that have shown themselves to be unduly re-
home. Neither dying patients nor their families are pro- strictive, unworkable, or unwise.
vided with the kind of emotional and spiritual support The challenge of end of life care will grow more serious
they desire and need. over the next three decades. The population of seniors in
In sum, too many Americans die unnecessarily bad the United States is projected to more than double over
deaths—deaths with inadequate palliative support, inade- the next 30 years, rising from 34 million in 1997 to over
quate compassion, and inadequate human presence and 69 million by 2030. At that time, one in five Americans
witness. Deaths preceded by a dying marked by fear, anx- will be age 65 or older. One in nine baby boomers is ex-
iety, loneliness, and isolation. Deaths that efface dignity pected to live to age 90, and by 2040, the number of
and deny individual self-control and choice. And too Americans over age 85 will be nearly four times greater
many Americans have their access to better care and ser- than today.2 The United States already struggles to provide
vices, through hospice and other forms of palliative care, basic primary care to its population; more than 40 million
blocked by a lack of information, misunderstandings, am- Americans are without consistent or adequate health in-
bivalence about treatment options, unfairly restrictive gov- surance coverage. Either they do not have access to health
ernmental policies, financial limitations, and other factors care at all, or they do not get it in a timely or efficient way.
that can and must be changed. Out-of-pocket expenses for prescription drugs are a signif-
Death is an inevitable aspect of the human condition. icant burden to many, and families must shoulder most of
Dying badly is not. Yet it usually cannot be avoided by the financial and emotional burden for long-term care. We
single individuals and families acting alone. Dying badly is have been remarkably slow to acknowledge the impending
a social problem that requires a social solution. It is an ar- health care crisis that looms ahead, much less the serious
tifact of the way our health care system is organized and fi- problems already with us. Health insurance reform has
failed several times since the end of World War II, despite
the bipartisan efforts of several presidents. Some incre-
Bruce Jennings, True Ryndes, Carol D’Onofrio, and Mary Ann Baily, Access
to Hospice Care: Expanding Boundaries, Overcoming Barriers, Hastings Center mental efforts are under way, but there is no public or gov-
Report Special Supplement 33, no. 2 (2003), pp. S3-S59. ernmental vision of a just health care system as a whole.
W
hen the first hospice pro- of accepted medical practice. Hos- from the very local to the national
gram in the United States pice cannot rightfully be a matter of level.
was started in Connecti- optional purchase for the affluent. If The specific needs of dying per-
cut in 1973, end of life care was an nothing else, the landmark public sons to which care must respond can
orphan field of little interest to main- policy decision in 1983 to include be grouped under the headings of
stream medicine, which was busy hospice care in the Medicare pro- physical, emotional, and social well-
fighting President Nixon’s war on gram put an end to such thinking. being. Within each category, the
cancer. Death and dying were such Whatever unfairly or unreasonably health care system plays an impor-
socially and culturally taboo subjects limits access to hospice care should tant role in meeting these needs but
that even clergy were uncomfortable be seen as a moral problem. is never the only actor and not always
discussing them, let alone physicians, In the past, ignorance about hos- even the chief actor. Physical needs
family, and friends. pice and about appropriate palliative include a safe, clean, and comfortable
Pioneered in England, hospice measures has also been viewed as an place for dying; control of pain and
took root in the United States during educational problem. Over the past symptoms; appropriate food and nu-
the 1970s and was added as a benefit six years, the Robert Wood Johnson trition; personal care (aid with
to the Medicare program in the early Foundation and other foundations bathing, feeding, dressing, and other
1980s. Its origins lie in a grassroots have dedicated tremendous resources activities of daily living); information
movement that lay outside the med- to advancing professional and com- about how best to manage the physi-
ical mainstream and was informed by munity education initiatives in sup- cal condition of the dying person;
an ethic of compassion, dignity, and port of improved end of life care. It is and information about the changes
service. More or less self-consciously, hard to imagine a North American in physical condition to be expected
hospice care was initially designed for health care provider that has not had over time. Emotional needs include
people who were dying of cancer, the opportunity to learn more about respect for the dying person’s dignity
and who had a functional family sup- hospice. as a human being; respect for the
port system and a home where they “Hospice” is both a concept (that dying person’s wishes, to the extent
could be cared for away from the is, a philosophy and a paradigm of possible; information about the emo-
high-tech hospital environment.7 care) and an organizational form of tional changes to expect; counseling
Over time, the vision and the values health care delivery. Hospice services to help the patient come to terms
of the hospice movement have devel- include professional nursing care, with what is happening; assistance
oped and matured. personal assistance with activities of with advance planning for death; and
daily living, various forms of rehabil- attending to spiritual concerns. So-
The Spectrum of Hospice itation therapy, dietary counseling, cial needs include companionship;
Services and the Hospice psychological and spiritual counsel- maintenance of social functioning, to
Philosophy ing for both patient and family, vol- the extent possible; assistance in
unteer services, respite care, provision “telling one’s life story” to others; and
C
hances are that as you age, you will either be a vated to provide care. However, closeness is not necessar-
caregiver or will need someone to care for you. ily defined by familial relationships. One might have a
The amount of care provided by informal care- close and intimate relationship with a spouse, for exam-
givers in the United States is staggering. Estimates of the ple, and be devoted to his or her care, or one might have
value of these services are $196 billion annually.1 an ambivalent, even abusive relationship and provide
We care for grandparents, parents, spouses, friends care resentfully.
and neighbors, and children. The average caregiver pro- Caring for a seriously ill person alone can be an over-
vides four and a half years of care. Three out of four care- whelming responsibility. If we know that there are others
givers are women, who themselves are less likely to be sharing the load, we can go on more easily. Also, many
cared for by a family member than their male counter- need care in order to give care.4 Professional caregivers
parts. With rare exceptions, our health care economic should not supplant the family in the caregiver role, ex-
system does not value or reward caregiving. Caring for a cept where the family lacks the physical or emotional re-
person who will not recover is one of the most stressful of sources, knowledge, or desire to provide care. The provi-
human experiences. People can feel intense psychological sion of support and education to caregivers is essential to
suffering in response to caregiving and bereavement. Ad- the ongoing provision of care to the dying. None of us
verse psychological distress can continue for months and are born knowing how to provide personal care. Effective
years. Those who report mental and emotional strain as- training programs for caregivers have been developed,
sociated with the chronic stress of caregiving had a mor- but they need to be made more widely available.
tality risk 63 percent higher than non-caregiving con- How much support is needed to take care of a person
trols.2 in the final phase of illness? Those leaving the hospital
Caring for someone with advanced illness is fraught have had the advantage of pharmacy services, transport
with hazards and opportunities. The impact of caregiv- aides, all the special supplies from a hospital bed right
ing on health and well-being varies widely. Most who do down to special cleansers, “24/7” surveillance and moni-
so are motivated by love and concern. Giving to others toring by a variety of nursing staff, dietary services, main-
can be very rewarding. It can also be very stressful. Many tenance, housekeeping, and so on. We send people home
factors determine the extent to which caregiving is a bur- who are very sick and do not make the correlation that
den and a blessing. Among these are the length and in- an untrained person or family will have to do the work of
tensity of caregiving, the nature of the relationship with an entire hospital staff. If they are fortunate, they will get
the person needing care, the amount of psychological, hospice care or a limited “prescription” for home health
social, and physical support provided to the caregiver, the care, which may come after they have already been pro-
presence of professional caregivers, and the self-percep- viding care for a long time.
tion and emotional health of the caregiver. Many caregivers are ambivalent about their own
The optimal period of caregiving appears to be needs.5 They may focus on the patient to the detriment
months rather than years. Most of us can muster the of their own health. Prior history of depression and pes-
inner resources to devote ourselves to the needs of some- simism are linked to poor adjustment after death. Care-
one we care about for a distinct period of time. But when givers who are able to continue participation in valued
caregiving responsibilities are considerable and no end is activities and interests experience less emotional distress
in sight, we feel more strain. This stress is both physical regardless of the amount of care provided.6
and financial. Over one-third of terminally ill patients The provision of family caregiving to the dying may
have substantial care needs.3 Long-term, open-ended help mediate the bereavement process following death.7
caregiving is often characteristic of the needs of the The combination of family caregiving and professional
chronically ill with advanced disease. support creates the opportunity for optimal care delivery.
We find it easier to care for someone who is an im- Family members, involved in the care of their loved ones,
portant part of our emotional life. The closer we are to with the support of an interdisciplinary team, for a peri-
the person we are caring for, the easier it is to be moti- od of time, can find that they deal more effectively with
their bereavement and have fewer physical symptoms in
the year following the death.
Stephen Connor and Jocelia Adams, “Caregiving at the End of Life,” The Medicare Hospice Benefit is unique in that it re-
Hastings Center Report Special Supplement 33, no. 2 (2003), pp. S8-S9. quires hospices to provide caregiver education, support,
Hospices are rich and complex in patients and families; it causes many achieve. Americans have very high ex-
virtually all of their facets—in the physicians to delay hospice referral; it pectations of health care, it would
skills and services they provide, in the focuses attention on the grave med- seem, except at the very end. Then
needs they meet, in the expectations ical condition and prognosis that ac- their expectations are grim. It is little
that people have of them, and in the companies a referral to hospice, and wonder that so many people have so
range of personal and social values away from the positive nature and as- much difficulty reconciling them-
they serve. Yet for twenty years, hos- pects of what a hospice program can selves to the incurable state of their
pice care has been defined, both achieve. People witness or hear about disease or to the futility and likely
overtly and implicitly, in public poli- dying without appropriate hospice burden of life-prolonging measures.
cy and in social attitudes, as being ap- care and they come to regard that Palliative care and hospice are not
propriate only for those who are be- prospect as the expected course of af- the care of “last resort;” they are not
yond the reach of hope or continued fairs, as something that they must something that comes after other
medical care. come to accept. Those most support- forms of care have been tried and
This understanding of hospice ive of hospice are people who have failed. Palliative care is an integral
care must be changed. It drives away experienced first hand what it can part of all health care, and should be
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S11
The picture presented by data on had dropped to 51.3 days. The range Data on the median length of stay
length of stay in hospice is not en- among reporting programs was from (MLOS) show a similar pattern. The
couraging. According to a study con- 12 to 186 days. Data for 1999 indi- national MLOS in 1998 was 25 days,
ducted by the National Hospice and cate that this trend has continued, with a range from 3.5 days to 112
Palliative Care Organization, the av- with the ALOS dropping to 48 days. days. The extraordinary difference be-
erage length of stay (ALOS) has been Crucially, the Medicare Hospice Ben- tween the 1998 ALOS of 51.3 and
declining steadily since the early efit, which many consider too restric- the MLOS of 25 suggests a very large
1990s, which is precisely the same pe- tive, is built on the expectation that number of programs and patients
riod as that of hospice’s most signifi- patients may be enrolled in the pro- with an exceptionally brief enroll-
cant growth. In 1992 the ALOS was gram for up to six months (210 days) ment in hospice. Anecdotal evidence
64 days. By 1995 it had declined before their expected death. from around the country tends to
slightly to 61.5 days, and by 1998 it confirm that impression.
T
he nature of the care that decisions they make, or their families
dying patients and their fam- make, if they are no longer capable of
ilies and loved ones receive is
fundamentally a question of values
A ll cultures consider the period
when people are dying to have
special significance, and America is
decisionmaking.
People who are dying are often
and ends, not of technical details and concerned with spiritual or existential
no exception. Moreover, despite this
issues and struggle to come to terms
means. It is fundamentally a state- country’s tremendous diversity, re-
with the meaning of life in general
ment about who we are as a nation search suggests that there is surprising
and their own lives in particular.
and as a community, for our moral agreement among Americans about Some have an explicit faith in religion
identity is nowhere better tested and what is important at the end of life.15 (organized or individual), and expect
tempered than in the respect and care The strongest message that emerges to be able to turn to it for support.
we show to those in the twilight of from this research is the importance Others may have a more generalized
life. Americans attach to maintaining belief that the course of life and des-
Diseases and frailty are essentially their independence and having their tiny are in the hands of a power or
dis-orders of human being, involving personal values and preferences re- powers beyond human control.
physical, cognitive, emotional, social, spected as they are dying. They want
Dying persons and their families
information about what is happening
and even spiritual aspects. They create have a strong sense of mutual obliga-
to them and what their options are.
discomfort and disability and may tion. The dying want to be surround-
Many fear “being hooked up to ma-
impair one’s ability to lead a personal- ed by and cared for by family, and
chines” in circumstances in which
ly meaningful and desirable life. Dis- families normally attach great impor-
their quality of life is low, but they are
eases frequently cause profound per- tance to being able to be with them
not anti-technology per se. Rather,
sonal, familial, and social conse- and care for them. (The families of
they see decisions about the use of some persons with AIDS maybe an
quences. Whether acute, chronic, or life-extending technology as a matter
terminal, what we refer to as the pa- exception.) Family members believe
of balancing benefits and burdens, they have a moral obligation to pro-
tient’s and family’s “condition” repre- and they want to be the ones to do vide this care and support; at the
sents the totality of their experience the balancing and to decide when it is same time, dying persons do not want
in reference to a disease. time to forgo the benefit. Once it is to be a burden and believe they ought
It was medicine’s failure to exercise clear that death is inevitable, most to be concerned about the well-being
its art in response to the patient’s and people would prefer to die at home of their families. They believe they
family’s condition that made the rather than in a hospital. should take their families’ financial,
United States receptive to hospice. Americans value compassion in mental, and emotional well-being
The preferences and values of most their caregivers, in the sense of empa- into account in the decisions they
Americans are not always in synch thy—the ability to sense what a pa- make about end of life care, and they
with the aggressive life-prolonging tient and family are feeling and act try to clarify their wishes to their fam-
treatment that mainstream medicine accordingly. The most important act ilies to lessen the burden of decision-
offers. Large public opinion surveys of compassion health care providers making in case they become unable
have for many years confirmed that can perform is the alleviation of pain to make decisions.
and control of suffering in all its Americans also recognize a societal
Americans are concerned about the
forms. What many fear most about obligation toward those who are
circumstances of dying and the end of
dying is the suffering and loss of dig- dying. Dying is the ultimate private
life care they and their loved ones are
nity experienced by persons in severe event, but it is also a profound social
likely to receive. Fear of loss of per- and constant pain. event; the community is automatical-
sonal control, of being a burden, of Trust is of paramount importan ly and inherently involved. Most
being abandoned, and of suffering ce. People want to be able to trust Americans consider dying alone and
from unrelieved pain stand out health care providers and the system in pain to be a tragedy. They believe
among the most common worries.14 as a whole to act in their best inter- that the community has an obligation
As much as we want, we cannot sup- ests. They want to be able to trust the to act when a dying person has no
press the question of what counts as a information they receive about their family, or his family is unable or un-
“good death” (or, perhaps more accu- condition and their treatment op- willing to meet its obligations of care
rately, “dying well”) and what counts tions. They want to be able to trust at the end of life. In a society as rich
as good care near the end of life. the health care system to respect the in resources as the United States, it
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S13
Health Care Justice and Hospice Care
B Y D A N I E L P. S U L M A S Y
M
ost theories of health care justice account inad- Medieval aphorism about the goals of medicine—“To
equately for hospice. They tend to regard cure sometimes, to relieve often, and to comfort always.”
death as an external force rather than as some- Meeting these needs requires resources. But the re-
thing to be integrated into an overall theory of care. They sources human beings may use to serve each other in
tend to be very individualistic. And they tend to assume their unequal bodily finitude and their equal human dig-
relationships of equal power among independent agents nity are always scarce. By what criteria can one judge
whose conception of justice is the delineation of fair how best to apportion scarce health care resources in
rules. order to promote human flourishing? This is a question
Yet for most of health care, and especially for the care of justice, and justice requires criteria by which to make
of the dying, these assumptions make no sense. First, as such judgments. I suggest six material considerations.
hospice workers know well, death can be a friend. Sec- The first five are commonly invoked in discussions of
ond, health care is consummately about relationships. scarce medical resources, but are not usually considered
Hospice workers also understand this clearly. Third, in the context of human finitude, dignity, and solidarity.
health care relationships, especially in attending to the The sixth is almost never considered except as the sum of
dying, are characterized by profound inequality, depen- the other five. These material considerations are: (1) in-
dence, and loss of control. And in the face of sickness and dividual need, (2) prevalence, (3) prospect of success, (4)
death, the ultimate question is whether life itself, not any alternatives, (5) cost, and (6) contribution to the com-
rule, is really fair. mon good. For the sake of illustration, let us compare flu
To account for these clinical realities, an adequate the- shots, liver transplants, and hospice according to these
ory of health care justice must have something substan- material considerations.
tive to say about human beings. Here, I will merely assert Need. The need for hospice care is very high. Symp-
that human beings are characterized by three features toms diminish human flourishing, not just death. The
that are especially relevant. First, as Aristotle insists, dignity of the dying is never less than that of the surviv-
human beings are naturally social. This is sometimes re- ing. Relieving an agonizing death is as much a part of
ferred to as a principle of social solidarity. Second, medicine as is preventing a serious illness or preventing a
human beings are finite. Death is an intrinsic element of premature one.
our humanity. Theories of health care justice must take Prevalence. As many as 70 percent of Americans will
human finitude seriously. Third, human beings have a have needs that could be addressed by hospice. By con-
radically equal intrinsic worth or dignity that commands trast, only about 1 percent of vaccinated persons individ-
the respect of others, independent of our preferences. ually benefit from vaccines, and fewer than 0.1 percent of
A human need may be defined as something required persons will ever be eligible to benefit from a liver trans-
for human flourishing. Indisputably, the finitude of the plant.
body of each and every human being is both the limiting Success. The prospect of success for hospice is ex-
term of all possible individual human flourishing and tremely high. Well over 90 percent of persons achieve sat-
also precisely the need that medicine, nursing, and the isfactory symptom relief with appropriate palliative care.
other health care professions serve. Health care profes- By contrast, even excellent flu vaccination programs
sionals all profess publicly to serve the needs of those achieve only about 75 percent success. And liver trans-
whose bodily finitude renders them vulnerable, dimin- plants carry a 50 percent five-year mortality rate.
ished in power and control, and unable to help them- Alternatives. The alternative to hospice is grim—the
selves. Health care professionals recognize the claims prospect of dying an agonizing death. By contrast, the al-
made on them by the dignity of the sick and by their ternative to flu vaccines is reasonable—treating influenza
own solidarity with them. cases as they arise—either symptomatically or even with
The finitude that the health professions address man- anti-viral drugs. But what is the alternative to liver trans-
ifests itself in three ways—death, disease or injury, and plant? A rational person would hope that it would be
symptoms. These correspond (roughly) to the traditional hospice. Many who need a liver will not receive one, and
those who are transplanted will still die. And they could
all benefit from hospice. In other words, it may actually
be unjust to offer liver transplantation unless one can
Daniel P. Sulmasy, “Health Care Justice and Hospice Care,” Hastings Cen- offer a program like hospice.
ter Report Special Supplement 33, no. 2 (2003), pp. S14-S15.
would not be right to let people “die Health care contributes directly to health care” be interpreted? Access to
in the gutter.” There is mutuality in health and therefore to personal well- what? At what cost? In this country,
this obligation, as there is in the being by preventing or relieving pain, the interpretation that best reflects
obligations of dying persons and suffering, and disability, and by American values as expressed in
their families toward each other. Peo- restoring lost function. In these ways, health policy debates over the years is
ple consider it appropriate that both it facilitates the continued capacity of “access to an adequate level of care
individuals and the health care sys- a person to act, to maintain dignity without excessive burden.” An ade-
tem have a sense of responsibility to- and integrity, to retain the capacity, quate level of care is also referred to
ward society as a whole and manage in short, to have a life, instead of as a basic level, or a decent mini-
end of life care so that resources are merely being alive. mum.
not wasted on over-treatment. Health care also expands the range The key characteristic of the con-
These are the values implicit in of opportunities available to a person cept of an adequate level is its explic-
discussions of end of life care in by helping to maintain the ability to it acknowledgement of limits on the
America. These values are essentially function as normally as possible de- extent of the societal moral obliga-
moral values; together, they consti- spite disease or disability. Even when tion, limits that arise out of the in-
tute a moral framework with impor- all it can offer is information, health herent scarcity of the resources a soci-
tant implications for the content and care can make a person better off; it ety has available to it. The concept is
characteristics of care and for the dis- can reassure or provide guidance on most easily appreciated by comparing
tribution of responsibility for the car- how to adjust. it with other ways to define a moral-
ing. Finally, health care—at least ideal- ly required level of care. For example,
ly and potentially—has profound in- equitable access could be defined as
Equitable Access to Health terpersonal significance; it nurtures access to whatever care would be of
Care at the End of Life bonds of empathy and compassion in benefit. This definition ignores the
a society and providing a concrete ex- reality that the benefits of health care
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S15
matters, in this view, is not what some characteristics the adequate The companion concept of exces-
everyone gets, but that everyone gets level must have. sive burden refers to the cost of meet-
the same. (Equality is, of course, in- For example, the adequate level ing the societal obligation to achieve
terpreted relative to health state; if varies with the availability of re- equitable access. Guaranteeing access
anyone with a certain liver disease sources in the society. Since the ben- to adequate care does not mean pro-
can get a liver transplant, everyone efits of health care must be weighed viding care for free. On the other
with that disease should be able to against the benefits of the competing hand, expecting people to sacrifice
get one.) This approach seeks to uses for resources, rich societies can everything else important in order to
avoid specifying the guaranteed level; be expected to set a higher standard obtain health care would be inconsis-
however, it cannot succeed. Given of adequacy than poor societies. In tent with the reasons for accepting
the inevitable differences in incomes adjusting the definition of adequacy the existence of a societal obligation
and personal preferences, people in to available resources, the values and to ensure access. The intermediate
the same health state are likely to opt priorities of society’s members are position is: People should be able to
for different levels of care. Maintain- important in guiding the trade-offs obtain an adequate level of care with-
ing equality would require leveling among different kinds of health ben- out having to bear an excessive bur-
up to the highest amount chosen or efits and between health benefits and den, whether in money or in other
down to some lower amount. Level- other social goods. costs such as waiting and travel time.
ing up takes society back to every- Therefore, the adequate level’s Given the unequal distribution of
thing of benefit, or worse (since some content cannot be determined solely income and of ill health, ensuring
people may use care that is not med- by health professionals. Moreover, that no one bears an excessive burden
ically beneficial). Leveling down re- since the adequate level depends on to obtain care will mean that some
quires society to choose the level that technology, resource availability, and will pay less than the full cost of their
will be guaranteed and then to pro- individual and societal values and own care and others will pay more.
hibit people from buying more with preferences, it cannot be settled once Equity requires that the final distrib-
their own resources. This would be and for all. Rather, it must be al- ution of the total cost of guarantee-
considered an unacceptable restric- lowed to evolve over time in response ing access to an adequate level of care
tion on liberty in the United States to changes in technology, resources, not impose an excessive burden on
and probably could not be enforced. and preferences. anyone. As with defining adequacy,
So, one returns to defining equity The importance of health care deciding what “excessive” means is a
as access to an “adequate level”—a (that is, the extent to which it is a difficult value judgment.
level of care that may be less than all special good) depends on an individ- Given this definition of equitable
beneficial care but is enough to ual’s health state or condition; there- access, the question for this report is
achieve sufficient well-being, oppor- fore, adequacy must be defined in re- the place of end of life care—in par-
tunity, information, and evidence of lation to health state. Defining ade- ticular, the place of hospice care—
interpersonal concern to allow a rea- quate care for a health condition re- within the level of care that all should
sonably satisfying life and peaceful quires specification of both the be able to obtain without an exces-
death. Care above this level has no amount and the quality of health sive burden on themselves or their
special moral status. People who care to be received. An adequate level families. Some implicitly assume that
want more than the adequate level is best understood as an entire stan- care for the dying should be of low
can get it, but society has no moral dard of care, not an insurance benefit priority in defining the morally re-
obligation to help them get it (al- package that merely lists the cate- quired level of care. This assumption
though there are practical reasons a gories of services covered. In hospice can be seen in the repeated sugges-
society might want to encourage the practice, it would pertain not only to tions that the best place to look for
consumption of particular health ser- admission and recertification deci- cost savings in health care is in the
vices, just as for other consumer sions, but also to the ongoing case care provided in the last year of life,
goods). management and care planning and in statements that define the goal
This analysis identifies a central process. of a health care system as “maximiza-
question for health policy: How Finally, the adequate level does tion of the health of the population.”
should a society determine the con- not include all potentially beneficial The focus naturally turns to those
tent of the adequate level? This is a care, but it can allow for choice. A types of health care that can stop a
question which countries around the range of cost-worthy treatment op- life-threatening infection, rebuild a
world are struggling with. The logic tions for a condition can be included shattered leg, stave off the onset of a
of the argument for basing health in the guaranteed standard of care to chronic disease, or restart and even
policy on this concept does not give a accommodate different patient pref- replace a human heart. Of course ac-
definitive answer, but it does indicate erences. cess to these types of health care
seems very important.
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S17
Pictures of Persons and the Good of Hospice Care
BY H I L D E L I N D E M A N N N E L S O N
W
hat I will call “distributive models” of health economically and socially productive. He sets himself a
care justice cannot supply a rationale for ex- course of progressive achievement, which he navigates by
panded access to hospice care. These models being fit, industrious, law-abiding, and, above all, self-
fail because they are based on two misleading pictures: disciplined. “It is a picture,” remarks Walker, “of autono-
the picture of the moral agent, who resembles few of us my as energetic self-superintendence with a consistent
as we lie dying and doesn’t look much like the loved ones track record over time to show for it.”2
who care for us either, and the picture of the good to be The picture of the career self, however, far from being
distributed, which seriously misrepresents the kind of a neutral representation of persons as such, is a picture of
good that hospice care consists in. only some people’s lives, and even then it is not a partic-
ularly accurate picture, because it leaves out the times in
The Picture of the Person the life trajectory when the career self could not yet, or
can no longer, pursue the projects or goods that give his
There are private social mecha- and family health history). This re- themselves. Lacking assurance that
nisms for spreading the cost, namely sults in lack of access to adequate care the donations of others will be forth-
private health insurance and private for some of the poor and for those at coming, people may fail to express
charity, but they are inherently insuf- high risk, and excessive burdens to their generous impulses or may direct
ficient to achieve equity. There are obtain care for others. Private charity them to other causes.
many reasons a private health insur- can fill in some gaps, but it, too, has For these reasons, the ultimate re-
ance market cannot achieve equitable never been sufficient to ensure ade- sponsibility for ensuring that the soci-
access by itself. To give just two, in a quate care for all. Lack of generosity etal moral obligation to ensure equi-
private insurance market premiums plays a role, but also important is the table access to health care is met falls
cannot be adjusted in accord with in- fact that charitable action requires the upon government, which exists to
come, and they will be adjusted in ac- coordinated efforts of many people to serve as an instrument for collective
cord with individual risk (to the ex- be effective, especially if the goal is a action. In all countries, including the
tent that risk can be predicted from stable guarantee of adequate care for United States, the government plays a
information such as age and personal all those who cannot obtain it for substantial role in the provision of ac-
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S19
cess to health care. Other industrial- alistic and mature way enables a per- without suffering serious adverse con-
ized countries have created organized son to engage in advance health care sequences themselves—without, that
health care systems, under govern- planning, thereby reducing the uncer- is to say, undue or excessive burden.
ment supervision, in which close to tainty and the anxiety of family and Organized religion. Religious
universal access is provided to a level loved ones. And doing so may lead groups have always been sources of
of care that at least approximates an more persons with critical and termi- support for the dying and their fami-
adequate level. As noted, all are strug- nal illness to prompt their physi- lies. Religion plays a major role in so-
gling with the issue of how to deter- cians—to give them moral permis- ciety’s attitudes toward death and
mine whether the care provided is in sion, so to speak, to refer them to dying, and the work of the profes-
fact adequate; however, the debate hospice programs when appropriate. sional clergy and organized religious
takes place in a comprehensive system Patients wait for physicians to bring it communities help terminally ill indi-
in which a cost-conscious standard of up, physicians wait for patients; viduals with spiritual support and
care has already been established. someone must break this vicious caregiving assistance. Given these tra-
Unfortunately, the United States cycle. ditional functions of churches and re-
has not achieved this much. Our Individuals also have a responsibil- ligious denominations, it is somewhat
health care system remains a patch- ity, as consumers of health care and as surprising that more attention is not
work of uncoordinated public and citizens, to support societal efforts to paid to end of life care issues in the
private financing and delivery struc- create a just end of life care system professional training of clergy and
tures that fail to meet the equity stan- (and a just health care system as that more congregations do not fea-
dard, for any reasonable definition of whole). Research suggests that Amer- ture educational programs to make
“adequacy” and “excessive burden.” icans agree in principle that they fellow congregants aware of the plan-
Some might argue that the lack of ought to do this; however, the same ning they need to undertake, or the
progress toward equitable access cre- research indicates that people are un- resources they need available, when
ates serious doubt as to whether comfortable thinking about death faced with a serious illness. Clergy
Americans really believe in a societal and therefore find it difficult to live must become more knowledgeable
moral obligation to achieve it. Yet up to this responsibility. Some of the about hospice in the years ahead, and
both the rhetoric and the actual con- recommendations in this report ad- the churches of America should be
tent of American health policy over dress the educational and cultural tapped as a resource for reaching large
the years demonstrate the existence challenge of overcoming widespread numbers of people with educational
and influence of this belief. The prob- avoidance of the topic of death and programs about hospice and about
lem is a political stalemate on the ap- dying. end of life care generally.
propriate means to achieve equitable Families. Research suggests that Physicians. Since antiquity, the
access, one that seems to be very diffi- Americans recognize a moral obliga- profession of medicine has acknowl-
cult to resolve. Thus it is within the tion to care for family members who edged the special moral obligation
context of an extremely flawed and are dying, and most would like to ful- that makes medicine a profession, not
inequitable overall health care system fill this obligation. Given the chang- simply an occupation: the obligation
that we must, for the time being, con- ing structure of American families to do what is best for patients. To ful-
sider access to hospice care. and changes in women’s labor force fill this obligation, physicians must
participation, fulfilling this obligation do more than offer a routine set of
Stakeholders in Hospice and is already difficult for some families; if services to all patients or passively
Their Responsibilities current demographic and social provide whatever a particular patient
trends continue, the difficulty is like- asks for. Rather, the physician must
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S21
What the People Would Want If They Knew
More About It:
A Case for the Social Marketing of Hospice Care
BY J O H N M . S TA N L E Y
I
f hospice-type end of life care is thought to be so good interest in the continuation of the curative therapies that
and so helpful by such a high percentage of both pa- would, as things now stand, have to be suspended upon
tients and families experiencing it, why don’t more hospice referral.
dying people make use of it and why don’t those who use I think it fair to say that all of us felt that this anti-hos-
it do so sooner? Those questions were the starting point pice attitude, or at least a strong reluctance to inform
of the deliberations of a small study group of the Increas- about hospice and palliative care, on the part of some sec-
ing Access to Hospice Care Project. The group had been tors of mainstream medicine is a significant barrier to a
asked to represent a consumer perspective of the issues more appropriate use of hospice type care at the end of
surrounding some of the apparent conflicts between the life. Efforts to improve doctors’ understanding should
social values our society endorses and our access to and continue, and use of social marketing to influence the at-
utilization of hospice-type end of life care. titudes of those in mainstream medicine should be en-
couraged. (The use of social marketing might be similar
Ignorance of the Hospice Care to what is suggested below for consumers.) But several of
us felt that medical practice was not the only barrier. For
tions and the economic structure in Some of these changes are possible ment’s historical experience in mak-
which health care organizations must within the existing framework and ing care more responsive to the values
function. Competitive pressures in simply require the attention and and preferences of dying persons, the
the market make it difficult for both commitment of management to hospice community has a special re-
non-profit and for-profit organiza- bring them about. Others will be dif- sponsibility to take the lead in a na-
tions to fulfill moral obligations with ficult for individual institutions to tional effort to improve access to
respect to access and quality of care make in the absence of broader struc- timely, compassionate, and appropri-
and remain financially viable. The tural change. ate palliative care.
fact is that hospitals, nursing homes, Health care organizations—in- Government. Government has
managed care organizations, and hos- cluding hospices—have a moral re- two important roles in health care. It
pices themselves will all have to make sponsibility to do what is feasible is a major third-party payer, and it
changes in the way they function if within the existing structure and to regulates the behavior of others in the
access to hospice care is to be in- cooperate with others in advocating health care sector. The federally fund-
creased and if the quality of care for for the structural changes needed to ed Medicare program is the major
persons with a soon-to-be fatal illness make it possible to meet their moral third-party payer for people who are
is to be improved. obligations. Given the hospice move- nearing the end of life and who are in
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S23
Hospice and Alzheimer Disease:
A Study in Access and Simple Justice
BY B R U C E J E N N I N G S
H
ospice care for terminally ill patients with can- sistance at home is nearly impossible to afford, no provi-
cer has grown markedly during the past two sion for respite care to give family caregivers a break is
decades and has become a significant part of the available in insurance policies, and rehabilitation services
American health care system. Since its origins in the early are denied. Until 2002 Medicare simply refused to pay
1970s, hospice has been relatively slow in broadening its for such services if a patient had an AD diagnosis. Later,
mission and expertise beyond cancer, but today about 40 the kinds of supports that would allow patients to re-
percent of hospice patients die of something other than main at home are lacking or unaffordable. AD patients
cancer; a significant and growing number are in the end are placed in nursing homes not because they need or
stages of congestive heart failure, chronic obstructive want to be there, and not because their families want
pulmonary disease, AIDs, amyotrophic lateral sclerosis, them there, but because it is the only place they can af-
or some other chronic debilitating illness. ford to go to get a modicum of safety, nursing care, and
Among those conditions for which hospice care dignity. Finally, as they are dying, uninterested in eating
would be a blessing for many patients and families, how- and unable to swallow, largely unresponsive to their sur-
ever, Alzheimer disease (AD) stands out as a vast domain roundings and barely conscious, AD patients are once
of unmet palliative care need. It is true that hospice care more the hot potato that no one in the health care sys-
is largely home based, but it can also be provided in tem really wants to touch. Nursing homes do what they
nursing homes and other long-term care facilities, and can, but they are not always attuned to the palliative care
that is where the vast majority of AD patients reside dur- needs of the dying, and they have virtually nothing to
ing the end stage of their disease. Hospice care is an ap- offer families who are deeply in need of healing.
proach that forgoes life-extending treatment, which is Is this really a problem? Perhaps the lack of AD pa-
often futile and inhumane in cases of end-stage AD. tients going into hospice programs reflects the informed
Hospice is a holistic, family-centered approach to care, choices and decisions of Alzheimer’s families. I don’t be-
which is exactly what is called for when the dying patient lieve that. This state of affairs reflects a lack of informa-
has already lost much of himself or herself (memory, cog- tion more than an informed choice. And it reflects fi-
nitive ability, communication, a sense of self) and fami- nancial, systemic, and attitudinal barriers precisely of the
lies have typically already undergone a lengthy ordeal of kind detailed in “Access to Hospice Care: Expanding
grief and loss. Seemingly tailor-made for AD, why then Boundaries, Overcoming Barriers.”
is hospice care so rare for those dying with dementia? What are the reasons for the low rate of hospice care
For the fact is that hospice is not widely recognized for dementia patients? What ethical and value issues does
and not very often used by Alzheimer families. AD was an Alzheimer family face when considering hospice, if
listed on the death certificates of only 23,000 of the 2.5 they hear about it at all? What special challenges do
million people who died last year. But in fact many more Alzheimer patients and families pose to hospice pro-
than that , maybe as many as 100,000, actually died with grams and care givers? How can hospices be better en-
Alzheimer’s. No one knows for sure how many AD pa- abled to provide care for Alzheimer patients and families?
tients are enrolled in hospice programs each year, but a These are the questions that must be explored in a
good estimate is that about 7 percent of the nation’s hos- more concerted dialogue between the hospice communi-
pice patients are individuals with dementia. (It is not ty and the Alzheimer’s community in the future. Hospice
known how many of those have a primary diagnosis of programs are finally ready to rise to meet the challenge of
AD and how many are patients whose dementia is sec- Alzheimer care; and Alzheimer families are ready to learn
ondary to some other terminal condition such as cancer.) about and to embrace the hospice approach to end of life
The sad fact is that otherwise medically robust and care. If the policymakers, physicians, and other “experts”
“healthy” AD patients fall between the cracks of our cannot facilitate this rapprochement, then they should
health care system near the end of their lives. get out of the way and at least stop creating barriers to it.
Truth to tell, this happens to AD patients and families What barriers? In the first place, of course, there is the
throughout the course of the disease. In early stages, as- Medicare Hospice Benefit and its six-month life ex-
pectancy rule. Utilization review and fraud and abuse in-
vestigators have tended to single out Alzheimer patients
Bruce Jennings, “Hospice and Alzheimer Disease: A Study in Access and (who tend to have the longest lengths of stay) in the
Simple Justice,” Hastings Center Report Special Supplement 33, no. 2
(2003), pp. S24-S26. charts they review, and hospices are gun shy when it
the health states in which hospice care. Many such patients have some the failure of the public to demand it
care are likely to be appropriate. The form of dementia, and nearly all of forcefully enough. We would argue
federal-state Medicaid program is a them will remain nursing home resi- that just as doctors have a moral
second important source of payment dents and Medicaid beneficiaries obligation to exercise active agency
for health care for the elderly since it until they die. on behalf of their patients and help
“fills in the holes” in Medicare for Federal and state governments them determine what is in their best
very poor Medicaid recipients. Medi- have a moral responsibility to evalu- interest, so do legislators and bureau-
caid also pays for health care for cer- ate these programs in the light of the crats have a moral obligation to be
tain categories of the non-elderly societal moral obligation to achieve active agents for citizens. It is their
poor. The program plays a particular- equitable access, and to make the duty to investigate the values and
ly important role in long-term care; it changes needed to ensure that there is preferences of the public and shape
pays some or all of the cost of custo- adequate access to hospice care. It has public programs to respond to them,
dial care in a nursing home for the been argued that if change has not rather than simply passively respond
majority of people receiving such occurred, it is simply a reflection of to lobbying by interest groups. In the
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S25
and accommodate themselves to the hospice approach to doctors, nursing home people, or the local Alzheimer’s
care. support groups.
I have heard it said that AD patients are inappropriate Too bad. Shortly before his death, my father had a
for hospice because they cannot benefit from the kinds of broken hip for several months that no one in the nursing
care hospice has to offer. Hospice is all about meaningful home noticed. By that time, he was no longer speaking.
life closure, and the patient who cannot remember, can- Maybe the better trained eye of a hospice nurse would
not speak or otherwise communicate, who does not rec- have seen tell-tale signs of what the doctor said must have
ognize family, friends, or caregivers and cannot therefore been constant pain. And at the time of his death, from
come to closure with any of them, is a patient for whom pneumonia treated palliatively, my family could have
hospice has little or nothing to offer. used some support of our own. I am an only child, and
Whatever force these observations may have, they my mother and I really had no one to talk to about his
miss the forest. Let’s be clear: AD patients need the ser- death but each other. And we really did not talk about
vices hospices provide. They need it just as much, albeit that. For me, his death was a relief. She had given him so
perhaps in different ways, than cognitively intact patients much care in the preceding decade it should have been an
do.2 They have pain that often goes untreated because even bigger relief to her. Still, I’m not sure. Without him
unnoticed and improperly assessed. Communication be- to care for. . . well. Alzheimer families have a great deal to
comes different as cognitive and speech pathologies pro- talk about—a great deal of healing to do—and hospice
liferate, but it does not disappear until very late, almost at might help.
the very end. AD patients need human concern, pres- The barriers to expanded hospice access for AD pa-
ence, touch, and witness no less than other dying per- tients and families are real, and overcoming them should
sons.3 not be taken lightly. But when looked at from a certain
Families too need the services hospices can provide— point of view, they are just so unnecessary. I suggest we
resistant though they may be, and different though their look at this not as accountants with sharp pencils or ad-
grieving may be. It is one thing to learn that someone ministrators with rough seas of regulation to navigate.
you love will be gone in about three months, as I did For once, let’s look at access to hospice with eyes of sim-
when my mother was diagnosed with advanced cancer of ple justice fixed on the reality of human suffering. People
the esophagus. It is another to see someone you love fade who know about Alzheimer’s and people who know
and disappear over several years, and then face loss anew about hospice really must get their heads together and fix
when a final decision about a feeding tube, or antibiotic this soon.
treatments for pneumonia has to be made, as I discovered
with my father’s long dying with Alzheimer’s. Hospice 1. N.A. Christakis, Death Foretold: Prophecy and Prognosis in
was present and very helpful in my mother’s final illness. Medical Care (Chicago: University of Chicago Press, 1999).
There was hardly a question about it (esophageal cancer 2. L. Volicer and A. Hurley, eds., Hospice Care for Patients with
Advanced Progressive Dementia (New York: Springer, 1998).
is aggressive and no treatment really works), and she died
3. T. Kitwood, Dementia Reconsidered (Buckingham, United
well, by her lights and by mine. With my father a few Kingdom: Open University Press, l997), and J. Killick and K.
years before, however, we never heard the term. Not from Allan, Communication and the Care of People with Dementia (Buck-
ingham, United Kingdom: Open University Press, 2001).
case of Medicare, reform is already on ate the regulatory roles they currently Finally, the federal government
the policy agenda; removing obstacles play in the light of the societal moral has a moral responsibility to take the
to access to hospice care should be in- obligation to achieve equitable access lead in trying to find a way to break
cluded in the goals of reform. and to make the changes needed to the political stalemate and restructure
Federal and state governments al- ensure that regulation supports the the American health care system so
ready have extensive regulatory re- goal of achieving equitable access to that access to the entire adequate level
sponsibilities in health care. They hospice care. of care, including hospice care, is
have a moral responsibility to evalu- guaranteed to all.
N
umerous factors influence of funding, access to insurance be- physician certifies that they are likely
access to hospice care. Such comes the functional equivalent of to die within six months if their un-
factors include public policy, access to care.) Moreover, those con- derlying terminal disease follows its
health insurance coverage, financing, ditions of eligibility, which will be usual course. The patient (or the pa-
the attitudes and practices of health discussed more fully below, are them- tient’s representative if the patient
care providers, and the attitudes and selves viewed by many as increasingly lacks decisionmaking capacity) in
preferences of health care consumers. outmoded, scientifically and ethically. turn agrees to waive all other
Of course, these factors can be posi- We concur. In particular, hospice is Medicare coverage related to their
tive as well as negative; they can facil- now based on a medical prognosis of terminal illness under Part A—
itate access and utilization of hospice remaining length of life as a portal to Medicare’s hospital benefits. A hos-
care as well as impede them. As we an isolated package of services offered pice patient’s primary physician can
seek to facilitate greater access and in an essentially all-or-nothing fash- still bill under Part B (Medicare).
utilization, we need to identify the ion. This approach must give way to Hospice patients may be hospitalized
impediments and “barriers” to access. a more flexible assessment of the pa- for brief periods. They will be cov-
Here we focus on three specific areas tient and family’s condition within a ered for palliative medical procedures
where the most powerful barriers continuum of services coordinated to as well as for various nursing and
exist: (1) laws, policies, and regula- meet changing needs over time. counseling services and assistance
tions affecting the organization, fi- The metaphor of barriers also im- with activities of daily living. Spiritu-
nancing, and delivery of care, (2) atti- plies that a person actively wants a al counseling must also be provided,
tudes and practices of health care particular good or benefit but is pre- if it is requested. Family members can
providers, including referring physi- vented from obtaining it by other receive bereavement counseling and
cians and hospice professionals them- people or by forces outside of his or follow-up for one year after the pa-
selves, who are the gatekeepers of the her control. In the case of hospice, we tient’s death and longer, if necessary.
system, and (3) consumer misunder- believe that sometimes a person’s own The purpose and underlying orienta-
standing, misinformation, and stig- failure to desire or actively seek hos- tion of hospice is neither to prolong
ma against hospice. pice care can reasonably be consid- life (or, perhaps more accurately, the
To speak of “barriers” may give the ered a barrier. There is no access dying process) nor to hasten death.
misleading impression that access is problem if a person would not bene- Medicare payment for hospice re-
being deliberately blocked, as in the fit from hospice services according to quires that the patient be reassessed
case of racial discrimination, for ex- his or her own values and interests. periodically (initially after each of the
ample. But deliberate barriers are not But if the person would benefit, and first two ninety-day periods, and then
the principal problem. For the most the lack of desire for hospice is based every sixty days after that) to deter-
part, the impediments to hospice ac- on misinformation and mispercep- mine whether hospice care is still ap-
cess are not deliberate or invidious; tion rather than on an authentically propriate. There is no upper limit to
they are subtle, indirect, and often in- informed choice to forgo hospice, the number of sixty-day recertifica-
advertent. Even in the case of the then the perceptions should be tions a patient may receive. Even
public policy known as the Medicare counted as a barrier to access. We be- though only patients expected to live
Hospice Benefit (MHB), first enact- lieve that this barrier is quite signifi- less than six months are eligible for
ed in 1983, the issue of constraining cant, and that overcoming it will be the Medicare hospice benefit at the
access to hospice is complex. Of especially difficult. Doing so will re- outset, they should not be declared
course, there are conditions of eligi- quire as many changes within the ineligible simply because they live
bility that patients must meet in structure and functioning of hospice longer than that (although it took a
order to qualify for federal and state as it in the outside regulatory and cul- recent ruling from the Centers for
insurance funding. But simply be- tural environment. Thus understand- Mediccare and Medicaid Services
cause an individual is not eligible ing the barriers to hospice access can (CMS) to establish this point). In
under the law and regulations for help prepare for our recommenda- terms of its early philosophy and in
Medicare funding does not mean that tions for restructuring and reforming terms of Medicare health policy, hos-
he or she is not “appropriate for”— hospice. pice was not intended to be a pro-
does not need and would not benefit gram of chronic or long-term care; it
from—hospice care. Medicare Hospice Policy was designed to be of relatively short
Many people receive hospice care duration. This dilemma and central
without recourse to Medicare fund-
ing. (In the absence of other sources P atients are eligible for the
Medicare Hospice Benefit if a
tension within hospice is particularly
significant to the issue of access to
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S27
hospice care, since the prognostica- Finally, the MHB can be applied cess. Regulations developed to ad-
tion of life expectancy is much more in many different care settings, al- minister the MHB, methods em-
difficult with many of the terminal though the vast majority of hospice ployed in monitoring regulatory
diseases that afflict large numbers of patients are cared for in private compliance, and penalties imposed
Americans—including heart disease, homes. Nonetheless, patients eligible for non-compliance have created ad-
chronic obstructive pulmonary dis- for and receiving hospice care may re- ditional obstacles in recent years.
ease, and Alzheimer’s disease—than it side in nursing homes or other long- The six-month rule. One major
is with some types of end-stage can- term care facilities. The challenges of barrier to access is the MHB eligibili-
cer. providing hospice care in nursing ty requirement that a physician certi-
At any time during this period the homes arise less from the perspective fy that a patient has less than six
patient or family can decide to return of the patient or family than from the months to live if his or her underly-
to standard Medicare coverage for differing perspectives of the hospice ing disease follows its expected
medical or hospital services that hos- and the nursing home; they have dif- course. This provision of the law was
pice does not provide (that is, for ferent managements, different profes- designed to restrict access for two rea-
treatment that is curative rather than sional staffs, different caregiving ori- sons: to control the overall costs to
palliative in intent). The patient may entations, different regulatory pres- the Medicare program, and because
later return from regular Medicare to sures, and different financial interests. the attitude in the early 1980s was
the MHB, but must be certified once These challenges appear to be effec- that hospice should be restricted pri-
more as terminally ill. These provi- tively resolved when nursing home marily to those in the terminal stage
sions of the hospice benefit may be of patients are frequently referred and of an otherwise incurable and lethal
particular significance to those pa- periodic interchanges between the or- form of cancer. Hospice was for those
tients and families because they may ganizations’ management and clinical who could not be cured, or those
be hesitant to be “locked in” to a staff occur. whose life could not be substantially
strict palliative care plan in the face of In the last few years, amid a grow- prolonged. Moreover, hospice was
uncertainty or disagreement among ing effort by the federal government not to become another branch of the
family members and in the face of a to crack down on cases of fraud in the chronic and long-term care system.
desire to treat aggressively some life- Medicare program, hospice programs Rather than being integrated into ex-
threatening condition. throughout the country have been isting nursing homes, for example,
Hospice programs vary in the ex- audited, and patients with long new and separate organizations certi-
tent and type of services they offer, al- length of stays have been targeted for fied as hospice programs were to be
though the Medicare program sets review and investigation. This may set up and would primarily provide
basic standards and services (known have had a chilling effect on hospice in-home care to the dying.
as “conditions of participation”) that programs, making them reluctant to These early characteristics, reason-
all certified hospices must fulfill. take on patients likely to have a able as they may have been at the
Some hospices offer palliative surgery, longer than average length of stay in time, are inadequate to meet the
the administration of blood products, the program. evolving needs of patients and fami-
and artificial nutrition and hydration lies today. Hospice does and should
to their patients; all provide prescrip- Policy and Regulatory Barriers serve persons dying of many different
tion drugs and other health care to Access lethal, incurable diseases besides can-
equipment that are related to the pa- cer. However, only solid tumor can-
tient’s palliative care plan. Treatments
for pre-existing medical conditions
and conditions not related to the pa-
T he problem is not the hospice
philosophy or the planned, pal-
liative, holistic approach to care, but
cers lend themselves at all well to the
prognostication of six-months life ex-
pectancy. Life expectancy for patients
tient’s terminal illness, such as renal rather the artifacts of Medicare policy with congestive heart failure, chronic
dialysis or treatment for traumatic in- (and similar restrictions in the private pulmonary lung disease, diabetes,
jury, are still covered under ordinary insurance sector) that inappropriately renal failure, and other life-threaten-
Medicare, Medicaid, or private insur- restrict utilization of hospice care. In ing diseases cannot be predicted with
ance. In general, hospice care is flexi- creating the MHB and through sub- the specificity the MHB regulations
ble and tailored to the dying patient’s sequent modifications of it, Congress seem to require.20 Many physicians
needs, and to the needs of the family, unquestionably increased access to are thus unable or unwilling to sign
within limits set by the professional hospice for millions of dying Ameri- hospice certification, and many hos-
expertise and judgment of the care cans and their families. Today, 75 pice programs are worried that they
team, the financial resources of the percent of hospice patients nation- will be accused of misconduct if they
hospice, and public policy regula- wide are covered by the MHB.19 accept patients who may defy the ini-
tions. Nonetheless, certain provisions of the tial prediction and remain on MHB
MHB present serious barriers to ac- coverage for more than six months.
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S29
The Relevance of Public Health
in Improving Access to End of Life Care
BY C A R O L D ’ O N O F R I O A N D T R U E R Y N D E S
A
ddressing the ethical basis for improving access to control. Interdisciplinary hospice teams prevent patient
hospice requires considering not only the needs isolation and abandonment, fragmentation of services,
of dying individuals, but also the needs and re- unnecessary hospitalizations, and avoidable stress to pa-
sources of the family, community, and society. Thus a tients and families. Hospice standards promote patient
population-based public health model is clearly relevant choice, resolution of intra- and interpersonal problems,
to the question of access. But while a public health model and growth at the end of life through coaching and ther-
could make many critical contributions to improving apeutic guidance. Hospice also goes beyond the tradi-
end of life care, it is also limited. Extending the model to tional medical model by including the family in both the
encompass concern for the dying may be prerequisite to unit of care and the caregiving team, by working to re-
engaging the public health community. There are three lieve unbearable caregiver burden, and by maintaining
possible ways to expand the model. supportive contact with grieving family members after
their loved one’s death.
Health Promotion and Disease Prevention The notion of health promotion for the dying is con-
sistent with public health efforts to enhance quality of
the hospice is normally expected to MHB and re-enter the ordinary “giving up” and failing to “fight the
pay for the cost of such treatments Medicare system at any time. good fight until the end,” rather than
even if it involves palliative radiation This arrangement reinforces the as an active, sometimes even aggres-
or palliative surgery. If patients do dichotomous thinking so prevalent in sive, mode of medical, nursing, psy-
not agree to such a plan of care, they American culture that the dying or cho-social and spiritual care that pro-
are normally not enrolled in a hospice terminally ill occupy a separate zone vides many tangible benefits to the
program and must continue to re- outside of normal society and previ- patient and family. Thomas Hoyer of
ceive normal Medicare coverage and ous life experience. While hospice CMS describes the stark separation
normal medical care (including non- proponents are quick to say “hospice envisioned at the time that regula-
hospice palliative treatments, if avail- is about life and living,” patients and tions to administer the MHB were
able) in the mainstream health care families understandably are reluctant developed: “We saw the choice be-
system. Hospice patients who change to accept hospice admission because tween hospice and Medicare as a mo-
their minds can of course leave the it is an admission of impending death mentous one; as a choice which
and because, to some, it is seen as would place beyond the everyday
grasp of the patient the offer of cura- ward their comfort, on the other. therapies at an unprecedented pace.
tive care and substitute for it, every Difficulty in making this decision de- Concurrently, intensified efforts are
day, the reality of palliative care.”24 lays access to hospice for many dying being made to enroll patients in clin-
In its early days, hospice was at- patients—often until they have only ical trials testing new drugs and med-
tractive to many patients and families days or hours to live, as the statistics ical devices.25 Even when patients rec-
because the alternative was dying in on hospice length of stay demon- ognize that participation in a clinical
pain, or becoming dependent on strate. trial may not benefit them personally,
providers who saw them as failures. This provision of the MHB is many regard this as a meaningful
Today, as life-extending treatments likely to become a much more formi- legacy to the advancement of science
are increasingly available, patients dable barrier to hospice access in that will help others.
and families are understandably leery coming years. Advances in molecular Requiring that MHB enrollees
of being compelled to choose be- biology and technological innova- forgo restorative therapies also has be-
tween receiving care to extend life, on tions in bioengineering are fueling come a barrier to quality hospice
the one hand, and care directed to- the development of new medical care. It also excludes hospice from
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S31
on the health implications of dying from chronic disease 2215-19.
to complement a 2002 report which indicates that 2. J. Kaprio, M. Koskenvuo, and H. Rita, “Mortality after Be-
chronic diseases are responsible for seven of every ten reavement: A Prospective Study of 95,647 Widowed Persons,
American Journal of Public Health 77, no. 3 (1987), 283-87; P.
deaths in America and 75 percent of the one trillion dol- Martikainen and T. Valkonen, “Mortality after Death of Spouse in
lars spent annually on health care in the United States.6 Relation to Duration of Bereavement in Finland,” Journal of Epi-
Consolidating available data on care of the dying within demiology and Community Health 50, no. 3 (1996), 264-68; C.
a public health framework would focus attention on this Schaefer, C.P. Quesenberry Jr, and S. Wi, “Mortality following
vulnerable population and their family members, provide Conjugal Bereavement and the Effects of a Shared Environment,”
American Journal of Epidemiology 143, no. 11 (1996), 1177-78; S.
strategic guidance to organizations working to improve Zisook, Y. Chentsova-Dutton, and S.R. Shuchter, “PTSD follow-
end of life care, identify ways in which public health can ing Bereavement,” Annals of Clinical Psychiatry 10, no. 4 (1998),
contribute to this effort, and create a path-breaking re- 157-63.
source for public education and community involve- 3. Institute of Medicine, Committee for the Study of the Future
ment. Most important, such a report would lay the foun- of Public Health, The Future of Public Health (Washington, D.C.:
dation for additional public health assessment, policy de- National Academy Press, 1988).
velopment, and service assurance to improve care of the 4. F.D. Scutfield et al., “A Survey of State Health Department
Compliance with the Recommendations of the Institute of Medi-
dying. cine Report, The Future of Public Health,” Journal of Public Health
Public health also could help analyze the problem by Policy 18, no. 1 (1997), 13-29; J.E. Fielding, “Public Health in the
studying the “epidemiology of bad dying,” developing Twentieth Century: Advances and Challenges,” Annual Review of
new metrics to measure the extent to which currently Public Health 20 (1999), xiii-xxx.
recognized outcomes of “a good death” are being 5. Institute of Medicine, Future of Public Health.
achieved, and assessing unmet population needs. In this 6. U.S. Department of Health and Human Services, The Bur-
regard, questions about the dying might be added to sur- den of Chronic Disease and Their Risk Factors: National and State
Perspectives, 2002; A Report of the Surgeon General, National
veys monitoring progress toward the Healthy People Center for Chronic Disease Prevention and Health Promotion,
2010 objectives, particularly those concerned with func- Centers for Disease Control and Prevention (Washington, D.C.:
tional status and access to needed health services.7 The U.S. Government Printing Office, 2002).
World Health Organization’s 1990 Cancer Pain Initiative 7. U.S. Department of Health and Human Services, Healthy
provides a valuable prototype for examining available in- People 2010: Understanding and Improving Health, 2nd ed., 2 vols.
terventions and resource requirements as the basis for (Washington, D.C.: U.S. Government Printing Office, November
2000).
public health policy development and service assurance.8
8. World Health Organization, Cancer Pain Relief and Palliative
The Turning Point initiative offers opportunities to in- Care, WHO Technical Report Series 804 (Geneva, Switzerland:
volve states and communities in transforming the public The World Health Organization, 1990); K. Foley, “Understanding
health system to assure compassionate care for the dying Palliative and Hospice Care as a Public Health Issue,” presentation
and their families.9 This goal should be part of the vision at Increasing Access to Hospice Care Project Meeting II, Alexan-
and moral commitment of public health in the twenty- dria, Va., 13-14 July 2000.
first century. 9. V. Lafronza, “Applications of Public Health Approaches for
End of Life Care,” presentation at Increasing Access to Hospice
Care Meeting II, Alexandria, Va., 13-14 July 2000.
1. R. Schulz and S.R. Beach, “Caregiving as a Risk Factor for
Mortality: The Caregiver Health Effects Study. JAMA 282 (1999),
contemporary efforts to integrate dif- One way of increasing access to row restrictions on the services hos-
ferent kinds of care. During the last timely hospice care, tailored to the pice programs are allowed to provide
two decades, hospice pioneers, pallia- current condition and needs of the to non-MHB patients. Barriers previ-
tive care specialists, and some con- patient within a continuum of care, ously discussed are exacerbated by the
sumer advocates have come to view would be to allow hospice programs requirement that hospices serving pa-
curative and palliative care as comple- to offer different types of services to tients enrolled in the MHB primarily
mentary approaches that should be patients at earlier stages of their ill- be in the business of providing hos-
provided in a changing mix over the ness. pice care. Because of this poorly de-
course of an illness to meet patient Constraints on the mission of fined restriction, hospices that care
needs. This concept has been most hospice. A third aspect of public pol- for MHB enrollees tend to avoid
clearly articulated in guidelines for icy that creates a barrier to access and serving Medicare beneficiaries before
pain control issued by the World to broadening the range of patients they enroll in the benefit. Patients
Health Organization and more re- who could be served by hospice are and families who need counseling at
cently in the United States by the provisions in the MHB and hospice the time of a terminal diagnosis
Agency for Healthcare Research and licensure requirements that place (or therefore are denied access to the help
Quality. 26 have been interpreted as placing) nar- that hospice professionals can pro-
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S33
tients have a principal diagnosis of ing home regulations reinforce hospice. Given the extremely large
cancer, compared to 63 percent of all restorative or rehabilitative goals. Sur- number of vulnerable patients experi-
1996 Medicare hospice beneficia- vey procedures and policies contained encing dramatic staff shortages and
ries.30 As in the home care setting, the in the state operations manual for limited access to quality palliative
MHB requirement for a definitive both hospices and nursing homes are care in nursing homes, hospice
six-month terminal prognosis is a often contradictory. The survey pro- providers should be encouraged by
major impediment to access among cedures for each service are not coor- policymakers and regulators to par-
nursing home residents. The impreci- dinated. The effect is that a hospice ticipate in joint care delivery.
sion of survival prognoses for persons patient in a skilled facility is surveyed
with chronic illness, such as demen- by two different surveyors with dif- Barriers to Access Related to
tia, congestive heart failure, and ferent rules and potential deficiencies Health Care Providers
chronic lung disease, may limit acces- stemming from legitimately different
sibility to the Medicare hospice bene-
fit for the majority of nursing facility
residents.31
approaches to care.
Through a series of reports begin-
ning in 1997, the OIG questioned
C losely related to the policy, regu-
latory, and financial factors that
affect access to hospice are structural,
Other regulatory problems the length of hospice stay and possi- organizational, managerial, and atti-
abound in the nursing home. The ble duplication of services for nursing tudinal factors. These come from
MHB is available to nursing home home residents receiving hospice, health care professionals as individu-
residents who are eligible for both lower volumes of hospice services als and from organizational policies
Medicare and Medicaid and to pri- provided in nursing homes, and pos- and corporate cultures within health
vate pay residents, but not to those sible hospice kick-backs to nursing care institutions, not limited to but
on the Nursing Home Medicare Ben- homes. Although the OIG found including hospice professionals and
efit. When hospice care is provided in that the average length of hospice stay hospice programs themselves.
the nursing home, hospice is paid the for nursing home residents was 181 For the most part, our analysis in-
Medicare hospice payment and 95 days, subsequent studies questioned dicates that the significant barriers to
percent of the Nursing Home Medi- OIG methodology and disputed access come from sources outside the
caid per diem, which the hospice these findings. New analyses showed hospice community itself—from
passes along to the nursing home to that the length of hospice stay for pa- government, from non-hospice
pay for the non-hospice care its staff tients in nursing homes is largely sim- health care professionals, and from
provides. But there are financial in- ilar to that of their counterparts in personal and social attitudes of con-
centives for nursing facility the community. Their average time sumers themselves. But it would be
administrators to prefer Medicare in hospice is brief, with over 50 per- incomplete and untrue to say that all
SNF reimbursement over Hospice cent under hospice care for less than barriers to access are imposed on hos-
reimbursement. Reimbursement 30 days, 25 percent for a week or less, pice programs from the outside. The
rates are higher relative to the rates and 7 percent for two days or less. hospice community needs to look
the facility would receive were the Despite these regulatory road- within and critically assess its own
dual-eligible beneficiary to elect blocks, change is still worth worth at- prevailing traditions, attitudes, expec-
Medicare hospice (and thus have tempting because there are clear ben- tations, and practices. If the federal
Medicaid-reimbursed room and efits to be gained by increasing hos- government were to say tomorrow
board). Therefore, nursing home ad- pice care in long term care settings.32 that Medicare would pay for hospice
ministrators reportedly promote ad- A comparison of Medicare beneficia- for every person who could demon-
mission to Medicare skilled nursing ries who died in nursing homes with strate a need for palliative care, the
care, and, by doing so, “discourage” or without hospice revealed that hos- hospice access problem would still
Medicare hospice enrollment of nurs- pice enrollment is associated with a not be solved entirely. Organizational
ing home residents. Furthermore, statistically significant reduction in and social-cultural change would still
when a nursing home resident en- acute care hospitalization and in- be required, within hospice and out-
rolled in hospice is admitted to creased likelihood of daily analgesic side.
Medicare-reimbursed skilled nursing pain management.33 Hospice patients Hospice professionals and orga-
home care after a hospitalization, the in nursing facilities receive fewer in- nizations. Hospice organizations
resident may be discharged from hos- tramuscular or intravenous anal- themselves—their policies and proce-
pice if he or she cannot or will not gesics, fewer physical restraints, fewer dures, staff attitudes, and corporate
privately pay for hospice care or for feeding tubes, and fewer hospitaliza- culture—can inadvertently create
SNF room and board. tions. Non-hospice patients benefit as barriers to access and earlier utiliza-
The divergent goals and percep- well, compared to non-hospice pa- tion. Organizational change is no eas-
tions of nursing homes and hospices tients in nursing facilities that have ier in the hospice world that it is in
contribute to access problems. Nurs- no contractual relationship with a other sectors of health care, govern-
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S35
programs lag behind in this area. Un- havior and characteristics of other many physicians feel uncomfortable
derstanding community perspectives, professional groups affect access to discussing end of life care and that
mores, and values and a good work- hospice care. As we review the ways in most physicians have not talked with
ing relationship of mutual trust and which physicians and other health patients about their preferences for
respect are essential ingredients of professionals can create barriers to ac- end of life care.41 When such com-
overcoming several barriers to access. cess, we should not forget that they munication does occur, it may focus
They are necessary if hospices are to also serve to facilitate access. only on the signing of advance direc-
educate their communities about hos- Failure to refer patients to hospice, tives. Physicians are committed to re-
pice care, and if they are to develop delay of referrals until shortly before specting patient autonomy and their
services that respond to the expecta- death, and ineffective referral proce- right to choose. As one observer has
tions of patients, families, physicians, dures appear to be the most impor- said, “They’ll present the odds of re-
and other community members. tant provider barriers impeding hos- sponding to a Phase I clinical trial
Without such accurate information pice access. In a recent NHPCO sur- and if the patient says he wants the 1
sharing and trust, referrals and admis- vey of hospice providers, physician re- percent chance, the discussion
sions may be reduced, care may be luctance to refer, mentioned by 35 ends.”42 Nevertheless, many in the
judged unsatisfactory, and communi- percent of respondents, was the num- medical and bioethics community are
ty support may be scant. ber one reason identified for the de- now challenging the notion that
Increasing access and serving more cline in hospice length of stay. A physicians must always acquiesce to
patients for a longer period of time number of qualitative studies, many patient and family desires for futile
requires program growth and the of which were synthesized in a 1997 treatments.43
availability of competent staff. Some review, indicate that multiple factors If a hospice referral is made, the
hospices have been unable to recruit may hinder referrals.36 physician may not provide enough
the highly skilled clinicians needed to Physicians and other health pro- information for the patient and fami-
deliver technologically advanced fessionals are trained to prolong life. ly to respond to it. Counseling is fre-
forms of palliative care. Many hos- Both the acute care focus of the U.S. quently limited to brief, one-time dis-
pices also have had difficulty recruit- health care system and the continual cussions even though more interac-
ing bilingual and culturally compe- development of new medical technol- tion is needed to help patients under-
tent staff. Others are plagued by gen- ogy reinforce the pursuit of this pur- stand the information provided, the
eral staff turnover. These problems, pose and mission. Referral to hospice choices available, and the probabili-
while of course not unique to hos- thus may be viewed as a medical fail- ties involved.44 Few physicians know
pice, limit the services a hospice can ure, or as depriving patients of hope. how to proceed when patients or
provide and also may negatively affect Physicians also may deny the serious- families indicate directly or through
the quality of services delivered. The ness of a patient’s condition and per- subtle signals that they do not want
point here is not to single out hos- sist in the expectation that restorative to discuss a terminal prognosis and
pices, for most of them are no more treatments may rescue those who are care options. The educational and
affected by these problems than are dying. Willingness to forgo life-sus- counseling methods used also may be
other health care institutions, but to taining treatments for patients varies ineffective. Attempts to change atti-
note that the lack of adequate financ- widely among medical specialties and tudes about dying through direct ed-
ing and other factors in the regulato- for patients with similar prognoses ucation may increase rather than alle-
ry environment can unduly disadvan- but different diagnoses.37 However, viate anxiety.
tage hospice programs, as compared compared to other Western countries, According to members of the Na-
to other providers. This is an aspect of physicians in the United States are tional Hospice Work Group, the
the equation leading to barriers to more likely to intervene regardless of most common question raised by
hospice access. expected outcome.38 consumers in family satisfaction sur-
Physicians. Although profession- Commitment to prolonging life veys is “Why didn’t we know about
als from many disciplines participate may be based, in part, on denial and [the hospice] sooner?” While physi-
in delivering health care, the identifi- fear of death. Physicians and nurses cians have stated that patients should
cation of provider barriers to hospice often enter professional training with ideally receive conventional hospice
access has concentrated on physi- unresolved fears about death,39 and care for three months before death,
cians. Physicians have primary re- because denial of death is engrained when asked why they have delayed
sponsibility and accountability for pa- in the culture of the medical commu- informing patients of the hospice op-
tient care and therefore a unique rela- nity,40 these fears may never be ad- tion, they often say they do not wish
tionship both with patients and their dressed. In addition, physicians and to withdraw hope from their patients.
families and with other care nurses, like other people, are actively For their part, patients often assign a
providers. Unfortunately, little is involved in denying their own mor- threatening developmental signifi-
known about ways in which the be- tality. It is not surprising, then, that cance to hospice: “If I enter hospice, I
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S37
mistaken impression that hospice disclosure. These dynamics, and con- hospice or defer it until shortly before
withholds all types of care, including tinued denial of impending death by death. Although this barrier is attrib-
medications for relief of pain and one or more key actors, can block uted to consumers, other factors in-
other symptoms. communication over a prolonged pe- clude health policy, health systems,
As already discussed, the MHB riod. Such problems interfere with and providers, which contribute to it
imposes a significant obstacle to hos- the timely provision of information by failing to provide support for pa-
pice access by requiring that enrollees about hospice. 46 They also can delay tients and families facing difficult
waive their rights to Part A Medicare and complicate advance planning for choices.
coverage for curative treatments. Al- end of life care, with the result that A number of efforts have been
though the desire for such treatments decisions are not made until death is made to educate American communi-
is associated with the anticipated out- too close for patients to obtain opti- ties about death and dying; however,
come, patients and families may over- mum benefit from the guidance and attendance at public education pro-
estimate the probability of survival. counsel of the hospice interdiscipli- grams about end of life issues general-
Clinicians observe that the stage of ill- nary team. ly has been disappointing. Compas-
ness affects patients’ optimism about In deference to patient autonomy, sion Sabbath, organized by hospices
prognosis, their desire to know the decisionmaking about end of life care in some cities, has been successful in
prognosis, and expectations about has been left to the patient; however, reaching community members who
treatment, as well as fear that talking family members also are often in- attend religious services on a desig-
about end of life care with physicians volved. The decisionmaking process is nated weekend. The Partnership for
might cause them to discontinue ag- not easy, even at its best, for it begins Caring and state coalitions also suc-
gressive care.49 with acknowledgement that life will cessfully organized groups in many
Patients and families vary widely end and requires communication communities to view and discuss the
in their willingness to discuss im- with at least one other responsible Bill Moyers’ television series on death
pending death and preferences for party. If death does not appear immi- and dying. In addition, community
end of life care with each other and nent, other matters may be accorded members have participated in discus-
with physicians and other profession- higher priority. sions and other gatherings organized
als.50 Over one-quarter of the Ameri- Once begun, the decisionmaking in response to tragedies. Still, most of
can adults interviewed in one survey process may be complicated by myri- the aforementioned events involve
said that they would not discuss with ad other factors. Differences in only some segments of the communi-
their parents issues related to the par- knowledge about and attitudes to- ty on specific occasions. Unlike con-
ent’s death, even if the parent were ward options for care can lead to dif- cerned citizen groups involved with
terminally ill and had less than six ferences of opinion about the best Sacramento Health Decisions, few
months to live. Adults also may have choice, especially when no alternative communities have ongoing public en-
difficulty discussing their own ap- seems optimal and selecting one re- gagement programs to help people
proaching death with others, and quires deciding whether or not to explore the profound questions raised
those who are not dying may be re- continue life-prolonging treatment. If by death and dying or to consider ap-
luctant to talk about the impending the patient suffers from diminishing propriate community response. Most
death of a terminally ill family mem- cognitive capacity, other family mem- American communities treat death
ber. bers may argue about his or her pre- and dying as a highly personal matter.
As illness advances, the patient, sumed preferences. Guilt, resent- When the need arises, friends, neigh-
other family members, and the physi- ments, and other residuals from long- bors, and community organizations
cian are likely to acknowledge the ap- standing relationships may affect the often spontaneously provide impor-
proach of death at different times. In nature and course of discussion, as tant help and support to dying indi-
their classic study, Glaser and Strauss may religious beliefs, financial consid- viduals and their families. However,
documented the complex interactions erations, and the actual and expected most communities have not engaged
that occur as various parties try to de- roles of different family members in in advocacy or other efforts to shape
termine who is and is not aware that a caregiving. Strong feelings about public policies that affect the care of
person is dying.51 The desire to pro- these issues may charge discussions the dying. The dying and the be-
tect others from painful information, with emotion, escalate tensions, and reaved are a silent and unorganized
to spare them the agony of difficult preclude the development of consen- constituency, and yet policymakers
choices, or to avoid conflict when sus. tend to disregard reforms proposed by
perceptions and values differ are just Resulting delays in decisionmak- hospice and other organizations un-
some of the factors that may deter ing can completely impede access to less accompanied by public demand.
H
ospice historically has served a shared world view and way of living In general, people of color are
relatively few people of developed by a society and transmit- more likely than whites to distrust
color, although some ted from one generation to another. health care providers and the U.S.
progress has been made. In 2000, 82 Culture evolves over time, influenced health care system. A 1994 survey of a
percent of all hospice patients in the by a people’s history, environment, representative sample of adults in the
United States were white; 8 percent social status, religion, and experience. 48 contiguous states found that 19
were African American, 2 percent Migration and immigration are asso- percent of African Americans, 14 per-
were Hispanic, 2 percent were ciated with acculturation and assimi- cent of Hispanics, and 8 percent of
“other,” and 6 percent were not classi- lation, but these processes occur at a Asian Americans, compared to just 3
fied by race or ethnicity.52 These data, variable pace. Variations in traditions, percent of whites, felt that they re-
together with reports that African customs, attitudes, and beliefs there- ceived inferior health care. Overall,
Americans and Hispanics receive less fore develop within racial and ethnic 15 percent of minorities believed that
pain medication than whites and a subgroups, and ultimately within they would receive better health care
growing body of cultural research on families and individuals. Variables if they were of another race.56
death and dying, indicate that race such as year of immigration, the While not all members of racial
and ethnicity are associated with bar- number of years lived in this country, and ethnic minorities distrust physi-
riers to hospice care.53 Identifying and preferred language, and degree of cians and the health care system,
overcoming these barriers is impor- English language fluency have been health care providers should recognize
tant in improving access to end of life used to classify Hispanic and Asian the possibility that dying patients and
care now and will become even more subgroups. But the number of cate- their families will question the mo-
critical in coming years. Between gories quickly multiplies, substantial tives underlying referral to hospice
1999 and 2030, the proportion of differences are still apparent within and other physician decisionmaking
people of color age 65 and older in them, and the categories do not read- at the end of life. Patients and their
the United States is projected to rise ily apply to many African and Native families also may be concerned that
from 16 percent to 25 percent.54 Americans. hospice care will be of lower quality
Efforts to improve care of dying Care must be taken not to avoid than hospital care and will be de-
members of racial and ethnic minori- overgeneralizing findings. Mindful of tached from personal needs and con-
ty groups must be understood within these pitfalls, we attempt to provide cerns. If they perceive that hospice
the larger historical and social context an overview of barriers that may limit providers are bureaucratic, they may
of their experience. Yet despite the access to or utilization of hospice by also be uncomfortable dealing with
importance of identifying and ad- people of color. them or their agency.
dressing issues that limit hospice ac- Experiences with health care. Religion. Moreover, religion is
cess for people of color, such research African Americans are aware of the central in the lives and deaths of
is fraught with conceptual and discrimination they encounter in the many people of color, and yet may be
methodological difficulties. Defini- broader health care system, and this neglected in health care settings fo-
tions are a fundamental issue, for the awareness affects their attitude toward cused primarily on the physical care
biologically based concept of race has hospice. As one researcher has ob- of patients.57 As a result, religious be-
been undermined by research show- served, “For African Americans, good liefs and values that affect the care of
ing more genetic variation within palliative care needs to be part of a the dying may not be considered in
than across supposed racial groups. larger continuum of equitable care making a hospice referral or describ-
Ethnicity refers to country or region that includes prevention practices and ing hospice services. Other barriers
of genealogical origin; however, values risk assessment, diagnosis, and appro- may arise when hospice providers fail
and beliefs differ greatly among eth- priate evidence-based curative treat- to recognize or respect religious tradi-
nic subgroups, many Americans have ment. Efforts to increase utilization of tions, or when the utilization of hos-
multi-ethnic backgrounds, and some hospice and other palliative care ser- pice services impedes the provision of
come from families that have lived in vices will fail if they do not address help and comfort by the patient’s reli-
the United States for many genera- the larger societal issues faced by mi- gious community.
tions. Defining race and ethnicity norities. Community-based interven- Religion and spirituality are cen-
therefore is not easy and is subject to tions—ones that have their origins trally important to African Ameri-
various practices. within the community and therefore cans. Religion provides hope, a place
To add to the confusion, race and reflect these larger concerns—are for belonging and feeling esteemed,
ethnicity are often erroneously equat- more likely to be successful.”55 and a place for releasing pent-up
ed with culture. Culture is defined as emotions. Church is the place of car-
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S39
Rediscovering Community at the Core of the
Human Condition and Social Covenant
BY I R A BY O C K
C
ommunity is a core value for end of life care. It Keeping company, non-abandonment. “We will be with
could not be otherwise. Dying confronts us with you. You will not have to go through this time in your
questions that go to the heart of what it means to life entirely alone.”
be alive and human. Looking at these questions, we find Alleviating suffering. “We will do whatever we can, with
that, fundamentally, human beings are social animals. In- as much skill and expertise as available, to lessen your dis-
deed, humanness may have little meaning without a con- comfort.”
text of relationships with others. Vanderpool asserted, Obligations and expectations of care find little place
“Being part of a community is essential for the develop- within the prevailing contractual framework of patient-
ment of consciousness and individuality and is character- provider relations that emphasizes individuals, rights and
ized by communication, mutuality, and the ethical ideals liberties. If, however, the fundamental social compact is a
of fidelity, gratitude, reciprocity, justice, and love.”1 covenant, by extension, we must incorporate covenantal
At its most rudimentary level, society is about people values and principles within our caring and our ethical
choosing an alternative to isolation and competition. The analyses. One reason for doing so is that many people
primal social compact is about offering cooperation and prefer for their proxies to make decisions about their care
accepting responsibility; self-interest rooted in mutual in ways that are, as Joseph Fins has argued, more
obligation. This fundamental contract—or is it a covenantal than contractual.3
covenant?—was the initial impetus for society and re- Inherent limitations of a contractual model carry pro-
mains a sustaining force today. Writing in that tradition, found clinical and social implications. Fins notes that the
philosopher Norman Daniels has identified “equality of contractual decisionmaking is founded on underlying
opportunity” as the foundation stone of justice and has distrust and requires external strategies such as advance
outlined principles to guide policy decisions and enable a directives, which assign responsibilities, rules and restric-
moral assessment of proposed health care systems. Sever- tions on surrogates. Protection of autonomous individu-
al years ago Daniels and fellow philosopher Dan Brook als from unwanted intrusion is the highest value. This in-
wrote this about the Clinton administration health plan: sight sheds light on the “right to die” as a logical exten-
sion of the contractual model as applied to illness, suffer-
“We are members not only of a national community ing, and dying. It is the right to avoid being protected
but also of many other communities that flourish with- from oneself. In this context, “assisted suicide” seems a
in our society: religious, racial and ethnic, as well as the misnomer, a contradiction in terms. Suicide is by nature
neighborhoods, towns and cities in which people share a solitary act. The act of suicide by an ill person (success-
a sense of common life. Fundamental to all these dif- ful or not) represents not only a rejection of care but an
ferent communities is a shared concern and responsi- attempt to unilaterally sever the social contract.
bility for one’s fellow members, especially those suffer- Traditionally, hospice has operated from an alternative
ing misfortune and in need of help.”2 covenantal and community-based approach. Not surpris-
Applied to situations of illness-related suffering, dis- ingly, hospice is often positioned as a counterpoint to
ability and dying, these core values suggest basic compo- physician-assisted suicide in ethics discussions and texts.
nents of care that we are obligated to extend: A social covenant is based in trust and is durable; the
Providing shelter from the elements. Metaphorically, we say connection with community cannot be severed. Within a
to the other person, “We will keep you warm and dry.” covenantal approach to illness, caregiving, dying, and
Maintaining hygiene. “We will keep you clean.” grief, people respond to others out of a lived sense of mu-
Assisting with elimination. “We will help you with your tuality and because they are motivated by a desire to care.
bowel and bladder function.” In acting covenantally, I make decisions affecting the
Offering food and drink. “We will always offer you some- well-being of another, conscious that her well-being af-
thing to eat and drink—and help you to do it.” fects my own.
The hospice model of care seeks to integrate medical
excellence within a community approach to end-of-life
experience and care. In addition to clinical professionals,
Ira Byock, “Rediscovering Community at the Core of the Human Condi- the interdisciplinary team typically includes one or more
tion and Social Covenent,” Hastings Center Report Special Supplement 33,
no. 2, (2003), pp. S40-S41.
clergy serving as chaplains. Additionally, a variety of
trained and supervised community volunteers from
ing and acceptance, regardless of class the concept of “end of life care,” identify themselves with a viewpoint
or circumstances. The African Ameri- which has been defined as the domain that is antithetical to the beliefs of
can clergy are important sources of of hospice, and regardless of qualifiers African Americans.
strength for sick and hospitalized pa- such as “compassionate” and “quali- Still other religious beliefs or prac-
tients and their families. Belief in im- ty,” much language about hospice re- tices about the end of life are com-
mortality is an essential part of the flects the notion that death is final. In mon among other racial and ethnic
outlook of many African Americans. discussing death with African Ameri- groups. For many Hispanics, death is
For them, death is not their final can patients and families, hospice determined by God’s will, and suffer-
state. These beliefs may conflict with providers therefore inadvertently may ing is an integral part of the process.
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S41
Family members and friends offer Among Hispanics, the concept of Many Mexican-Americans and
prayers at the bedside, at a home altar, personalismo connotes “a deep sense of other Hispanics also adhere to a fam-
and in church. Candles may be kept being part of a network that compris- ily-centered model of medical deci-
burning twenty-four hours a day as es one’s family as well as a sense of sionmaking. One survey found that
means of continuous worship. Clergy family as an extension of the per- 45 percent of elderly Mexican Ameri-
and lay visitors are common in the son.”61 The valuing of family consid- cans believed that the family, not the
hospital and at home. Most Asians re- erations over individual or communi- patient, should be the primary deci-
gard death as part of the normal life ty needs is nearly universal.62 Rela- sionmaker in terminal care. Mexican
cycle, and within the family system, tives of Hispanics also participate in American men are often expected to
the ideal response is one of serenity, the physical and spiritual care of the provide for and be in charge of their
even to the point of denial. A sense of dying, and many travel considerable families.
“closed awareness” has been de- distances to do this. Hispanic family The high value placed on the fam-
scribed, in which the medical staff members are nearly always willing to ily by many racial and ethnic groups
and patient are aware of impending provide personal care, but they may is attached to expectations about fam-
death but avoid discussing it.58 Values be unwilling to provide technical care ily and community roles in the care of
and beliefs vary greatly among the ap- unless extensive teaching is provided. the dying. Perceptions about the ex-
proximately 350 Native American In some Hispanic families, pregnant tent to which hospice permits mem-
tribes or nations in the United States. women do not provide personal care bers of the family and community to
While most believe in an afterlife, or attend the funeral. Children some- fulfill their traditional roles is likely to
some, like the Navajo, do not.59 times are shielded from involvement influence acceptance of referrals to
The role of the individual. Many in care of the dying, but they also hospice.
people of color do not share the value may have great responsibility. Informing the patient. Although
of individualism that is central in In many Asian cultures, the con- informing dying patients about their
mainstream American culture. The cept of self also tends to be familial. condition is a dominant value in U.S.
individual therefore may not be con- Boundaries between self and others medicine and mainstream American
sidered autonomous and separate are less rigidly drawn than in Western culture, people from a number of eth-
from the family, and the family may cultures; an individual’s life is inter- nic groups believe that patients
be regarded as more important than connected with others, and there is a should be protected from this infor-
the individual. Cultural definitions of distinct sense of mutual obligation.63 mation. A 1995 survey of 800 elderly
family also may differ from the tradi- These values profoundly influence Los Angeles residents from four eth-
tional American concept of the nu- care of the dying and related patient nic groups found that while nearly 90
clear family; they may encompass a and family roles. The Asian family, percent of Blacks and Whites said
large extended network. too, is intimately involved in care of that they would prefer a straight prog-
African American culture places a the dying, and family members are nosis, 45 percent of Korean Ameri-
strong value on the collective, values often present in medical settings to cans and 65 percent of Mexican
“community” as a good in itself, and serve as interpreters if necessary and Americans said that they would not
believes in honoring members of their also to shelter the patient from a bad want to be told if they had a fatal ill-
immediate community, especially the prognosis or diagnosis and the bur- ness. Belief that patients should be
family. The family bonds that domi- den of decisionmaking. told the truth about their diagnosis
nate the African American culture The role of the family. Family tra- was correlated with degree of accul-
often are used as a protective measure ditions and values exert a strong influ- turation.65 In discussions with diverse
against outside forces.60 Caring for ence on decisionmaking about care of ethnic groups, the Sacramento Health
the sick and dying at home is a long- the dying patient. African American Decisions Project similarly found that
standing tradition among African families gather, make their views first-generation immigrants regarded
Americans. Relatives come from known, and discuss their opinions talking about advance planning as
other locales to help. Friends, neigh- about what should be done until a taboo because this would be a bad
bors, and the religious community comfortable consensus is reached. omen, but that second- and third-
also participate in providing care and When the patient’s condition does generation residents were much more
support to dying patients and fami- not provide sufficient time for such open about the topic.
lies. Terms such as home care, hos- discussion, those who must make de- To engage a Chinese patient in a
pice, respite care, and volunteerism cisions without consulting other fam- discussion of prognosis or code status
are never used to describe these ser- ily members bear the emotional bur- may be perceived as casting a death
vices. African American families feel a den of offending them.64 Health care curse, making the person despair and
strong sense of obligation to gather at providers who do not understand or possibly die sooner.66 When a pa-
the time of death. appreciate this tradition may appear tient’s illness is life-threatening, it is
to be pressuring decisions. assumed that practitioners will talk
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S43
V. Toward New Models for Hospice
V
alues serve as compass set- public and private policymakers and marketing to professional education;
tings for public policy and so- community leaders, and the bioethics from the provision of funding for ser-
cial change. We have argued community—largely agree on what is vices to the cultivation of a profes-
that the status quo in the realized ac- wrong with the present system: there sional calling. Making it tangible re-
cess and utilization of hospice care is is too much emphasis on expensive, quires a new vision of hospice, one
not ethically acceptable. Justice and burdensome, and futile life-prolong- that holds firm to many of the tradi-
equity call for reform and change. ing care and too little emphasis on tions and values of the hospice move-
Moreover, there is the compelling na- palliative care that relieves suffering ment but finds new and more flexible
ture of the vulnerability and need and sustains quality of living. There is organizational forms through which
that dying itself brings about, regard- also widespread agreement that hos- to express those values.
less of personal or idiosyncratic dif- pice care must be made equitably
ferences in response. Mortality and available to a broader population of Value-Based Hospice
chronic, eventually terminal illness patients near death. Hospice is valu-
are the great equalizers; they do not
respect differences of wealth, power,
education, cultural background, or
able as a component of end of life
care planning and case management,
and also as a component of palliative
T he vision of best hospice practice
that we offer is based on three
characteristics of hospice: (1) Hospice
ethnicity. If dying includes everyone care in ealier stages of chronic illness. provides expert assistance with the
within its ambit, our society’s caregiv- Where there remains less agreement management of the “condition” of
ing response to dying should be no is on precisely what services should be the dying person and her family. (2)
less inclusive. If dying tests the digni- offered, and at what stage in the Hospice is flexible and dynamic in
ty and sense of meaning of all who course of the disease. developing new expertise and services
experience it, then our caregiving sys- A commitment to just access to to meet changing community needs.
tems should be designed to assist and hospice care is not sufficient if it is (3) In managing a patient’s condi-
support the dignity and meaningful merely an ideal to be sought in the tion, hospice provides continuity of
continuation of a life through the distant future, once other needs are caregiving and care planning, across a
dying process. This system is hospice, met and health care costs are under broad continuum of settings and ser-
and it should also be accessible to control. A commitment to what jus- vices, as the person moves along a tra-
everyone. tice requires in caring for the needs of jectory of chronic, debilitating, and
There is a consensus on the need the dying must be translated into tan- life-limiting illness. These characteris-
for fundamental change in American gible institutional structures and pol- tics reflect goals that hospice has
end of life care. The main stakehold- icy mandates. It must come to inform sought to adhere to; they also provide
er groups in this arena—consumers, those things that motivate behavior elements for structuring the new vi-
providers, the hospice community, in the health care system, from social sion of hospice.
Condition management. Hospice
has been successful because it has
Table 1. therapeutically responded to the con-
Aspects of a patient’s and family’s condition sequences of the patient’s illness, her
total condition, or situation, not just
Pathologies: Consequences: her disease. Hospice is often referred
Medically defined disease The experience of illness to as a “holistic” form of care, and is
often said to follow a “bio-psycho-so-
Lung cancer “I can’t catch my breath.” cial model” of treatment in contrast
Congestive heart failure “I’m losing weight.” to mainstream allopathic medicine,
in which the focus is on the biomed-
Severed spinal cord “What if the treatments don’t work?”
ical aspects of a pathological process,
Emphysema “What will this mean to my family?” without much regard for the psycho-
Dementia “My wife can’t turn me.” logical and social aspects of the pa-
“How can we compensate for a lost tient’s lived experience of the disease
function?” or the implications of the disease state
“How will this change my life?” for family members or others (Table
“What do I need to resolve?” 1). The notion of “managing” a total
human situation or condition implies
T
he fragmentation and discontinuity of care in the The effects of discontinuity resemble the effects of aban-
present system should become major concerns in donment, thus continuity is part of the injunction to be
palliative care. People facing serious illness and trustworthy. Because continuity in palliative care con-
their families express concern about such inadequacies of tributes to desirable outcomes in the final phase of life, it
care because they fear these problems reflect a broken re- better allows for the desired last stages of living relation-
lationship with their care providers.1 Breaks in continuity ship, and this lives with survivors in important ways, it is
appear as losses of information or momentum regarding also part of the injunction to contribute to the well-being
care of one’s bios, or physicality, as well as interruptions of society.
in the understanding of a patient’s and family’s hu- No matter which ethical framework is used, then, the
manum, or context.2 Losses of information—as might moral obligation is clear. Further, because the dying are
happen when clinical data are lost or not transferred characterized as having special status due to their vulner-
across sites of care—may result in diagnostic shortcom- ability, and because there is little opportunity to redress
ings. It may result in a lack of clarity about which physi- adverse events the way one might correct a surgical com-
cian, nurse, or other professional is in charge of the pa- plication, continuity in care of the dying has a special im-
tient who is seen by multiple people. The other kind of portance.
break—an interruption in contextual understanding— Lack of continuity of care is often the result of short-
undermines the patient’s and family’s emotional comfort, falls in management of patient care. Insofar as it may be
which is secured by a sense of trustworthiness among an individual or medical systems feature, both are avoid-
professionals. The disjunctions in relationships among able; individual professionals’ responsibilities can be set
the patient’s family members and trusted providers, up and systems can be designed to provide full continu-
which occur as the location of care and the care team ity. That is, care roles, teamwork, and systems can be de-
changes, may undermine the terminally ill patient’s qual- signed to achieve continuity. Lack of continuity in care is
ity of remaining life at a time when many seek excep- therefore an avoidable moral shortfall for professionals
tional authenticity in relationships. and those who are responsible for the design and man-
In medicine generally, coordination and continuity of agement of the care system.
care are lauded; their absence is understood as a prob-
lem.3 We agree, but suggest that this is to understate the Continuity of Care in Hospice
issue. We characterize insufficient striving for continuity
of care as a failure in ethical standards and claim that its
absence in palliative care is of special significance.
A s a philosophy of care that values the family context
and home care, hospice tries to provide care in
which institutionalization is minimized. Familiarity of
In all major frameworks of medical ethics, continuity environment is particularly important to the mentally or
of care is readily justified. In the framework set out by physically frail since social contexts are generally not eas-
Beauchamp and Childress, continuity is justified by at ily transportable. Yet as an illness progresses, patients
least three of the four cardinal principles.4 Because conti- sometimes must move from one care setting to another.
nuity provides for needed aspects of care, it is justified by Hospice patients sign up to obtain palliative care, regard-
the principle of beneficence. Because it avoids needless less of the care setting in which they reside. Part of hon-
suffering, it is justified by non-malfeasance. And because oring this obligation requires hospice to attend to the
it tends to allow the patient to remain in better control of needs of continuity when the site of care does change.
his or her illness care choices, it is justified by autonomy. While most non-hospice health care providers, such
In more traditional codes of professional conduct, as hospital nurses, do not follow their terminally ill pa-
professionals receive injunctions to care, to cure, to be tients to other care sites, hospice staff are charged by the
trustworthy, and to contribute to the well-being of soci- Medicare Conditions of Participation, as well as by in-
ety.5 Since discontinuity causes deficits in medical thera- dustry and accreditation standards, with the specific and
py, much as many other lapses in standards of practice, unique responsibilities to both provide and oversee pal-
continuity is part of the injunctions to care and to cure.6 liative care as the patient moves across care sites with
which they have contractual relationships. Continuity of
True Ryndes and Linda Emanuel, “Is Discontinuity in Palliative Care a care is optimized by this form of care management, not
Culpable Act of Omission?” Hastings Center Report Special Supplement 33, just for their medical needs but for the growth opportu-
no. 2 (2003), pp. S45-S47.
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S45
nities that rise out of therapeutic support in life closure growing confusion and subsequent fall at home resulted
tasks. from an easily correctible situation such as digitalis toxi-
When hospice care management is conducted in a city and was not an irreversible aspect of dying.
sensitive and intentionally therapeutic manner, human Comfortable dying. “Patients will die free of distress-
issues emerge that define the context of care for the pa- ing symptoms.” It is not uncommon for there to be mis-
tient/family unit. A patient’s needs, concerns, values, re- perceptions about the meaning of a patient’s distress,
lationships, and fears create the context within which based on incomplete messaging among team members.
hospice care management is provided. For example, clin- A devoutly religious cancer patient, wracked with guilt
icians caring for those made vulnerable by illness must for a past “sin,” may express his suffering as “pressure in
address patients’ concerns for their loved ones, fears of my head,” “living in pain,” and “heaviness in my chest.”
dying, fears of being a burden, needs for forgiveness, The busy hospital nurse, unaware that the patient is re-
needs to forgive, and need for reconciliation. Similarly, ceiving assistance from his priest in wrestling with issues
they are likely to address the caregiver’s physical and of forgiveness, may inadvertently respond to his com-
emotional burden, their social isolation, unspoken wish- plaints with additional analgesia. Or, a distressed family
es, role reversals, and grief. These issues influence a pa- member’s perception that a loved one’s physical pain is
tient’s adherence to medical treatments but also and not adequately managed may persuade an on-call home
more importantly affect his summation of what it has health agency nurse to provide unwarranted analgesia to
meant to be human. Effective coaching of dying patients a patient who had achieved a personally acceptable bal-
through their illness and death or bereavement depends ance between levels of discomfort and consciousness.
on a shared vision of the full psychosocial and spiritual Self-determined life closure. “Anticipating death,
context, as the patients reflect on the meaning of their mentally competent patients have full autonomy to
role in society, the value of their legacy, their life lessons. make decisions about how the remainder of their life is
Care can be optimized by all providers when the coordi- spent within the allowances of law.” New care providers,
nating interdisciplinary team, such as can be found in failing to appreciate the complex developmental ground
hospice, simultaneously addresses medical problems and which the patient and family have covered in embracing
contextual issues. Although many studies remain to be the patient’s actual health status, may too quickly con-
done, providers in the field feel that hospices’ adherence front and erode their adaptive denial, leaving them emo-
to continuity of care standards has been helpful in facili- tionally denuded rather than supported. In other cir-
tating the passage of essential information regarding pa- cumstances, a patient’s unrelated significant other, who
tients’ preferences, values, relationships, clinical profiles, has provided long-term care at home, may have no legit-
and goals of care to the various teams and team members imized standing in some institutional care settings, leav-
from whom a patient receives care. ing the patient bereft of the most meaningful support in
life closure activities.
Continuity in Palliative Care Beyond Hospice Effective grieving. “Grief is a natural, expected reac-
tion to loss that is experienced psychologically, socially,
P eople facing life-threatening illness should be able to
receive excellent palliative care whether in hospice or
in another care setting. Hospices need continuous self-as-
behaviorally, and physically.” The characteristics of the
mourner, the nature and meaning of the specific loss,
characteristics of the death, and social and physiologic
sessment and improvement as well, but non-hospice sys- factors will all influence the grieving process. For family
tems have faced the bulk of public dissatisfaction and members, grieving is effective when it eventually sup-
should take a hard look at the types of outcomes that are ports the individual’s ability to adjust to their environ-
jeopardized by discontinuity in care. Using the “end re- ment without the deceased and regain the ability to in-
sults outcome model” created by the National Hospice vest in other activities and relationships. Health care pro-
and Palliative Care Organization (NHPCO), a few ex- fessionals are in a position to support the very different
amples can illustrate the ways in which discontinuity grief profiles and tasks of patients and families. Unaware
negatively affects a patient’s quality of life closure.7 of the hospice team’s counseling goals, nursing home
Safe dying. “Patients will die . . . in an environment staff may fail to distinguish grief-related situational de-
that does not aggravate or hasten dying.” Practice gaps in pression from a more profound clinical depression re-
various care settings (home, nursing home, hospital) are quiring medical intervention, thereby suppressing the
clearly linked to threats to patient safety, particularly patient’s ability to effectively work through the grieving
when it is not clear during times of emergency who is process by overmedicating her. Or, a family member’s
medically in charge of unconscious patients, patients displaced anger toward hospital staff may not be under-
without caregivers, patients with multiple diagnoses, or stood as an aspect of his grieving by “temp” nurses
patients with dementia. Similarly, lost laboratory test re- staffing the hospital. Such anger warrants professional
sults may have clarified that (for example) a patient’s evaluation but may instead result in fewer episodes of
a respect for the integrity and partici- the baby boom generation’s emerging family caregivers are women. They
pation of both patient and family caregiving crisis, expanding hospice devote an average of four and one-
members and betokens an active policy in the near term will require a half years to providing care, but often
process of controlling symptoms and compelling national prevention strat- ten years or more. Fifteen percent of
handling aspects of everyday life so egy directed toward the elimination all caregivers and 31 percent of those
that they do not undermine the of avoidable distress among seriously providing the highest level of care re-
kinds of relationships, reminiscences, ill patients in all settings. port that they subsequently suffer
communication, feelings, and activi- Historically, a keystone of hospice from significant physical illness or
ties that the patient finds meaningful philosophy has been the dictum that emotional stress.
and that give remaining life its posi- “the patient and family are the unit of Furthermore, in a large popula-
tive quality. care.” This view is supported by the tion-based cohort study of 819 care-
The emotional and social mean- Medicare Conditions of Participa- giving and non-caregiving partici-
ing of “condition”—the conse- tion, JCAHO and CHAP accredita- pants, ranging from sixty-six to nine-
quences of disease on the lives of pa- tion standards, and the professional ty-six years of age, it was found that
tients and those around them—may standards promoted by the National those who reported mental or emo-
be at least as important to patients as Hospice and Palliative Care Organi- tional strain associated with the
the physical impairment itself.72 zation. Attention to the needs of chronic stress of caregiving had a
However, while “Americans think it caregiving family members has been mortality risk 63 percent higher than
is important to plan for death and found to improve consumer satisfac- non-caregiving controls. Specifically,
dying, they are uncomfortable with tion levels and result in lower health the at-risk group was found to have
the topic and resist taking action.”73 care utilization among hospice care- fewer preventive behaviors, decreased
This underscores the importance of a givers. According to a survey by the immunity, greater cardiovascular re-
social marketing approach to public National Alliance of Caregivers and activity, and slower wound healing.74
engagement. While future policy ac- the Association for the Advancement Thus failure to address or control
tion may eventually arise as a result of of Retired Persons, 73 percent of the distressing elements of a patients’
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S47
Table 2. care (such as unrelieved symptoms,
A History of Responding to Changing Community Need emotional and spiritual anguish, con-
flicting or vague communications)
1973 First U.S. hospice founded in New Haven. Predominant model was inpatient puts considerable strain on the care-
care. Palliative approach narrowed to cloaking the symptoms, not eradicating givers. In fact, it has morbid conse-
their cause . quences for them. As the nursing and
nurse aide labor pool shrinks and the
1981 Hospice Demonstration Project conducted. The project included twenty-one volume of need for chronic and ter-
sites. The populations studied were largely white, middle-class people with minally ill services at home rises, all
cancer.
caregivers—but notably aging female
caregivers—confront a predictably
1983 Medicare Hospice Benefit (MHB) established. This created a major push to
bleak future. The cost of domestic
provide care at home.
caregiving is largely invisible, while
1984-89 • Earlier conceptions regarding hospice/palliative care are challenged: Palliative the “cost to business” or “cost to tax-
care is redefined as appropriate care, not just cloaking of symptoms. Some payer” tend to be at the center of pol-
innovative hospices begin to offer blood, perenteral fluids, chemotherapies, icymakers’ attention. Many former
radiation therapies, and surgical procedures, as well as treatments of caregivers, mainly wives and mothers,
opportunistic diseases, pushing the Medicare Hospice Benefit boundaries and with no family left to care for them,
philosophies of some (smaller) hospices. will themselves die in nursing
• Programs proliferate in urban areas and inner cities. homes.75 This is a tragic social con-
• Hospice programs begin providing care to persons in Skilled Nursing Facilities. tract in return for the money they
• Hospices respond to patients dying from non-cancer chronic diseases, saved society with their unpaid labors
dementias, and general debility. of love.
• Response to people with AIDS begins in San Francisco and New York, and Changing service in response to
then spreads across the country. changing community need. Through
• Pediatric hospice care is offered. its sources of financing and its organi-
• Hospices support compassionate detachment from respirators. zational forms, hospice should be
• Hospices serve patients wishing to terminate dialysis. flexible enough to adapt and change
in response to changing community
1990s • Hospices extend care to:
needs. The historical development of
• children born dying and their families
hospice, both as a concept and as a
• dying prisoners
• faith-based populations (Muslim, Jewish, Fundamentalist Christian)
form of health care practice, demon-
• Hospice models emerge that provide consultative care for patients who are strates the dynamic and fluid charac-
not medically or emotionally ready for the MHB. ter of a responsive and holistically ori-
• Many hospices reach out to bereaved community members not previously ented form of end of life care. (Table
served by hospice, such as those affected by terrorism, natural disasters, 2 expands on hospice’s historical de-
suicide, and accidental death: velopment.)
• children and teens experiencing loss of parents and siblings Amid the wide variety of programs
• parents losing children and services that make up the hospice
• survivors of HIV/AIDS-related losses world today, there are signs of an ex-
• individuals experiencing loss from catastrophic circumstances such pansive movement toward earlier in-
as sudden traumatic death tervention in the disease trajectory,
• survivors of suicide in the family, school, or close community more continuity of care across a
• communities experiencing catastrophic events such as airplane greater number of settings, and more
crashes, mass shootings responsiveness to community needs
and functions beyond those associat-
2000s • Both outside and within the hospice community there is increased emphasis ed with end of life care for individual
on construction of an evidence base to promote quality improvement and best patients and families. Some hospices
practices in palliative care.
are not only clinical care delivery
• Medical visits at home by palliative care physicians and nurse practitioners.
agencies, but are also becoming pub-
• Hospices develop senior care management services.
• Hospice/PACE relationships develop. Hospices partner with PACE program and
lic health agencies and institutions of
consider designation as sites of “all-inclusive care of frail elderly” under health education and health promo-
Medicare/Medicaid PMPM payment structure. tion. Our research indicates that ex-
• Hospices undertake collaborative palliative care partnerships with hospitals, isting hospice programs are already so
consult services and units, joint education diverse that they can be classified into
three basic types—Medicare hospices,
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S49
Figure 1. strophic death. In short, it is clear
that these programs have expanded
The Medicare Hospice Benefit
the expression of core interdiscipli-
nary competencies to individuals
other than those imminently dying.
Disease-modifying therapy While the first expression of hospice
Curative and restorative intent Hospice care competencies has been care of the
dying; this is not the core hospice
competency. The core hospice com-
petency is the interdisciplinary re-
sponse to the human consequences of
chronic disease, disability, and aging.
Presentation 6 mos Death With this in mind, we should
begin to think of hospice as offering
Family bereavement
something of value to many different
groups of patients, or to a given pa-
tient and family at many points along
Figure 2.
a spectrum of symptoms and services
and across stages of chronic illness. To
Hospice as a Continuum of Care provide the impetus for policy and
practice changes that will increase ac-
cess to hospice care, we need first to
Disease-modifying care re-envision hospice as a concept of
Curative, restorative, palliative intent health care—a new way of thinking
Risk Life closure about the nature and goals of health
care itself—rather than an end stage
Disease form of care.
Foreseeable demographic factors
Consequences of illness will shape the delivery of all health
care in the future. They highlight the
Death importance of condition-based hos-
Bereavement pice care delivery systems, for the
Consequence-modifying care human consequences of chronic, de-
Regardless of disease modifying intent bilitating disease will increase as larg-
er numbers of people live longer.
Eighty million Americans are current-
niche provider at the tail end of a dis- to prevent Medicare fraud, are out of ly living with chronic disease. That
ease into a provider whose purview step with what is most innovative and number is expected to nearly double
ranges across the trajectory of a life- creative in the hospice community by the year 2030. Moreover, between
limiting disease. Moreover, the model today. An audit of the services provid- 2010 and 2030, the population over
of traditional hospice as a specialized ed by hospices within the National age 65 will rise more than 70 percent,
service and an independent agency Hospice Work Group found that while under current law the popula-
with a limited mission will gradually many are already well beyond the tion paying payroll taxes will rise less
be transformed into a more compre- confines of the Medicare hospice than 4 percent. By 2020 the absolute
hensive model of hospice care in type. In addition to focusing on the size of the RN workforce will be ap-
which hospice becomes the coordi- care of those facing a terminal illness, proximately the same size it is today,
nating center for a range of palliative many of these hospices are active in nearly 20 percent below require-
services that can be accessed by pa- the delivery or development of phil- ments.76 Finally, by 2025, those with
tients in various ways as the patient’s anthropically supported programs for low incomes and multiple chronic
underlying condition evolves from di- individuals who want symptom man- health problems, particularly women,
agnosis to death. Figure 3 emphasizes agement and adaptive counseling will be forced to spend nearly 72 per-
that the hospice treats both the pa- even as they pursue active treatment cent of their income for health care.77
tient and the patient’s family. directed toward prolongation of life. These facts and trends paint a dis-
Many current and narrowly de- These hospices also serve those facing turbing picture of the future of end of
fined hospice policies and regulations, the debilitating effects of aging or the life care. The shortage of caregiving
including otherwise laudable efforts consequences of sudden and cata- personnel will jeopardize the avail-
Life closure
Risk Disease
Patient
Consequences of illness
Death
Bereavement
Risk Disease
Caregiver
Morbidity and mortality
Death
ability of physical support and the goals and care plans, of hospice must ning boards. New care provider roles
availability of medications. It may re- be allowed to match the rhythms of must be encouraged to emerge, and
quire a return to widespread institu- chronic illness as it becomes an in- nursing leadership must examine
tionalization near the end of life. It creasingly widespread social condi- how strong traditional gender identi-
may lead to intergenerational con- tion. Of all the existing structures and fication with the role inhibits the re-
flicts between the aging baby boom specialties in health care today, it is cruitment of men into the nursing
generation and younger cohorts. hospice that has the best chance of workforce.
Indeed, as we have studied and re- successfully transforming itself into The promise for a larger mission
flected on the problem of increasing this chronic care social medicine of in the future, perhaps as much as the
access to hospice care, we have come the future. ethically compelling nature of the
to the conclusion that an adequate The adjustment and transforma- end of life care needs that it can meet
understanding and ethical perspective tion will not be easy. In the future, for those without access today, is the
require us to envision hospice as a po- hospice will need to address the con- principal reason for being urgently
tentially new paradigm of social ditions that these demographic trends and deeply concerned about policy
health care for an aging society. If we will generate. The future hospice reforms in the finance and delivery of
can learn how to define, organize, fi- must be technically proficient in clin- hospice.
nance, and deliver hospice care prop- ical practice and in telecommunica- This vision goes far beyond the
erly, then we may have found the key tions. It must also use staff time effi- issue of equitably distributing a ser-
to coping with the major problem of ciently, tailoring interdisciplinary vice to heretofore unserved or under-
caring for staggering numbers of per- teams and palliative treatment regi- served individuals and groups. At
sons with chronic, degenerative dis- mens to the specific needs of patients least in the case of hospice care, jus-
ease, who must make difficult adjust- throughout the continuum of care. tice goes beyond the issue of distrib-
ments and transitions in their lives as Hospice volunteers will be needed in uting something whose nature and
they pass through various stages and greater numbers, and they must be characteristics are firmly established
phases of their disease, both in terms well trained and well treated. Offer- and well understood. With hospice,
of its biological manifestations and in ing an opportunity for volunteerism the nature of the service to be justly
terms of the cultural meaning and so- is one way in which the hospice ben- accessible or distributed is itself open
cial implications of the chronic dis- efits the community as well as indi- to question and in flux. The myriad
ease experience. The experience of vidual patients. Specialists in fields problems of access that we face in
chronic disease segues into the experi- such as real estate and housing, trans- hospice today are not only due to
ence of dying with no bright lines, no portation, insurance, financial plan- overly restrictive rules of eligibility, fi-
radical symptomatic changes, and no ning, and elder law will have a (virtu- nancing, and delivery; they are a lega-
scientific medical prognostications. al) role to play on hospice teams and cy of a more fundamental mistake,
The flow and rhythms, as well as the in consultation with hospice plan- namely, conceptualizing hospice as a
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S51
fixed entity whose mission was to the belief that it will be, and soon. not provide complete solutions to the
provide a specialized niche service to This will require a strong ethical con- problems we face.
one population with one (vastly com- viction about the injustice of denying We welcome further analysis and
pelling) need—the care of persons access to hospice and palliative care to debate concerning the ethical foun-
dying of incurable cancer who, in ef- those who would benefit from it and dations of just access to hospice and
fect, had been abandoned by main- a renewed sense of determination to palliative care. We look forward to
stream medicine. Almost immediate- set the system right. We have at- working with leaders in end of life
ly, as far back as the mid-1980s, hos- tempted to provide a foundation for care to bring about policy reform and
pice began to chafe at that specialized that ethical conviction, an unblink- institutional change. And we hope
bridle and harness. It is high time to ing assessment of the barriers and dif- that our recommendations will be
give it a much freer rein. ficulties that need to be overcome, taken at least as a useful contribution
This report began with the claim and a number of suggestions that to ongoing efforts at expanding hos-
that the care dying people receive in contain fresh ideas and will at least set pice access and fairness in the health
the United States can and should be us moving in the right direction, if care system more generally.
improved. We end with the hope and
T
he following recommenda- vey of services calling themselves als should inform the discussions and
tions are the result of five “palliative care” be conducted. The recommendations proposed for
Hospice Access and Values survey will: Medicare beneficiaries in acute hospi-
Project Task Force meetings (involv- tals, rehabilitation programs, and
! determine what elements these
ing segregated and mixed stakeholder long-term care centers as well as am-
services have in common and how
discussions as well as solicited pa- bulatory, home care, and hospice pro-
they qualitatively differ;
pers), and responses to thirteen foun- grams.
dational queries on the Access and
! use the exhaustive NHPCO
Values website from September 1999 Recommendation 2: Public policy
Standards of Hospice Care/Robert
through August 2001. The recom- should expand the scope of hospice
Wood Johnson Foundation Pre-
mendations identify a realistic but services.
cepts of Palliative Care Crosswalk
challenging course for the future of We recommend that Congress ap-
as a foundation for the survey;
hospice in America. They will require prove a series of demonstration pro-
patience, political leadership, broad jects to Advance Hospice Access
! document the scope of palliative
debate, a willingness to compromise, (AHA). The goals of the AHA Pro-
care services in U.S. hospitals in
and an openness to new ideas. They jects would be twofold. One goal
order to assess the integration of
also require further research and in- would be to advance hospice access
this service within the practice ac-
creased understanding of why the for persons who do not yet qualify for
tivity of the hospital and deter-
health care system behaves as it does traditional hospice due to extended
mine the relationship, if any, of
and of how various new practices or uncertain prognosis and/or their
palliative care consultation to hos-
may affect the needs and well-being preference for therapies directed to-
pice admissions; and
of dying patients and their families. ward cure or prolongation of life.
Some recommendations have Second, the projects would foster and
! identify specific savings realized
been shared in whole or in part with promote access to hospice’s condition
from improved end of life care
various stakeholders and constituen- management competencies through
practices, such as patient cost
cies: Congress, hospice providers, in- innovative community relationships,
avoidances and lower health care
vested consumers, and other stake- as with PACE or Parish Nursing.
utilization by family caregivers
holder representatives. Other recom- The AHA projects would identify
who are relieved of the intensity of
mendations, such as Hospice/PACE ways to make hospice’s palliative ser-
their caregiving burden.
programming, have already resulted vices available to those receiving insti-
in preliminary discussions among Ac- 2) We recommend that a national tutional and outpatient care prior to
cess and Values participants and na- forum be convened to bring together the conventional hospice access
tional association leaders, for they key constituencies, including point. Patient preference, caregiver
outline reasonable demonstration provider and consumer groups, to es- need, and functional status, not just
projects worthy of federal funding tablish a definition for palliative care diagnostic criteria, would be consid-
support. to provide the framework for service ered in determining eligibility. The
delivery models, standards of care de- demonstrations would study the time
A. Recommendations livery, and reimbursement models. and tasks of the palliative care en-
Concerning Policy and 3) We recommend that a position counter to define and adjust the rela-
Regulatory Barriers to Access paper be developed in conjunction tive value unit for this component of
with the national study and forum care, then define and measure the
Recommendation 1: Healthcare that will elucidate current and pro- palliative care component of the care
leaders, policymakers, and key stake- posed distinctions between palliative provided to patients in hospitals,
holder groups must come to consensus medicine, palliative care, and the care nursing homes, home health agen-
on the definition of palliative care available through hospices of various cies, and outpatient settings. Deter-
and develop a framework for greater types. mination of the efficacy of early in-
accountability in palliative care de- 4) We recommend that this posi- terventions on the reduction of
livery in concert with financing tion paper and a record of the delib- health, economic, and social burdens
mechanisms. erations and conclusions of the study of caregivers would also be a key
1) As was done by the Kellogg and forum be presented to members function of the demonstrations, as
Foundation with the emerging hos- of Congress, executive branch offi- they are likely significant.
pice movement in the early ‘80s, we cials, and other policymakers at the Hospices eligible for these projects
recommend that a national field sur- federal and state level. These materi- would have to demonstrate the use of
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S53
innovative community service con- physicians by CMS Administrator graph will highlight the ways in
nectors, such as continuity of care Thomas Scully recognizing “that ter- which states variably provide access to
volunteers, by multiple organizations minal illnesses do not have entirely hospice services.)
including hospices, resulting in en- predictable courses.” These are very
hanced access to palliative care and positive signs, yet we recommend B. Recommendations
improved continuity of care across CMS and its fiscal intermediaries Concerning Service Delivery
care settings. protect hospices, referring physicians Barriers to Access
The expected outcomes of these and patients from regulatory misin-
two types of demonstration projects terpretation in the future by estab- Recommendation 5: Leaders in
would be: lishing a statistically accurate defini- the hospice community and in main-
tion of prognosis that recognizes its stream medicine must promote hos-
! to determine the effects of pal-
relevance as a population measure, not pice-hospital partnerships in order to
liative care on patient’s responses
an individual one. This is consistent meet the current and projected needs
to curative treatments;
with a wide literature addressing the of the rapidly expanding volume of
fallibility of medical prognostication chronically and terminally ill pa-
!to improve pain and symptom
on individual patients. For any popu- tients.
management;
lation of patients with serious life- Activities to promote this relation-
threatening illness there is a probabil- ship have begun in earnest over the
! to respond to the consequences
ity of death with a mean, standard course of this project, led primarily
of the patient’s serious illness by
deviations from the mean, median, by the Center to Advance Palliative
addressing family dynamics of pa-
and mode. A population-based statis- Care and the National Hospice and
tients with new “bad diagnoses,”
tic is also consistent with Congress’s Palliative Care Organization. Exam-
frequent admissions, or failing
original intent in developing a risk ples of collaborative relationships, if
treatments;
arrangement with a maximum cap. not models, have been identified.
These efforts should be continued
! to decrease procedures not
Recommendation 4: Expand ac- and supported.
aligned with the patient’s goals;
cess and delivery of hospice to dying 1) The quality of end of life care
and
persons residing in long-term care fa- for the unprecedented volume of pa-
cilities. tients in the next 30 years will be de-
! to create a model of compas-
1) We recommend that Congress pendent on professionals operating
sionate “third act” care for patients
modify Medicare Part A and outside of their traditional service
with dementia and their families.
Medicare RUG reimbursement sys- silos. Consequently, we recommend
Included in these demonstrations tem to support hospice care of the that leadership groups in hospice and
should be a mixture of programs with resident without financial penalty to palliative care (such as NHPCO,
the capacity to operationalize delivery the nursing home and the CAPC, the Academy of Hospice and
of services via telemedicine applica- resident/family unit. Palliative Medicine, the Hospice and
tions. (See Telemedicine recommen- 2) CMS and state departments of Palliative Nurses Association, and
dation 6 below.) health must adopt a common survey Partnership for Caring) work with
process for hospice patients in nurs- palliative care physicians, hospice
Recommendation 3: Policymak- ing homes so that patients’ self-deter- leaders, and hospital administrators
ers should act immediately to bring mination in allowing death to take its to construct a regulatory reform
about policy reform regarding the ab- normal course is not subordinate to agenda that would enable improved
solute application of an individual’s clinically and personally harmful reg- outcomes for hospitalized patients in
prognosis as a primary criterion for ulatory requirements, such as the en- need of hospice and palliative care.
reimbursement of services. forcement of feedings among dying 2) We recommend the develop-
CMS officials have recently noted patients. ment of ongoing studies of maturing
slight increases in the average length 3) CMS should require that any hospital/hospice models in which
of stay in hospice in 2000 and 2001. state licensed facility may not prohib- hospitals have successfully integrated
These increases coincide with a letter it the delivery of hospice care as pro- comprehensive palliative care pro-
from former HCFA administrator vided under the Medicare or Medi- grams into their organizations longer
Nancy-Ann Min De Parle clarifying caid hospice programs. (A compara- than five years. These models would
that hospices and beneficiaries should tive analysis of hospice services to pa- be surveyed to identify replicable
not be penalized “if a patient lives tients in Skilled Nursing Facilities variables critical to the long-term suc-
longer than six months.” This has (SNFs) is currently being conducted cess of these ventures. Included in
been followed by even more explicit by the National Hospice and Pallia- such studies would be a review of the
communications to hospices and tive Care Organization. This mono- effectiveness of grant-supported hos-
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S55
ages. Both the U.S. Chamber of hospice and palliative care to the pub- 284 (2000). Other important studies in-
clude Last Acts, Transforming Death in
Commerce and the Employer Task lic in light of their new capabilities, America: A State of the Nation Report (Wash-
Force of the Robert Wood Johnson- flexibility, and accessibility. ington, D.C.: Partnership for Caring, June
funded Last Acts Campaign have 1) In line with the service innova- 2001); Robert Wood Johnson Foundation,
taken important first steps in helping tions of the community and compre- Promoting Excellence in End-of-Life Care
hospices take credible steps forward. hensive hospices, we recommend de- (Missoula, Mont.: Practical Ethics Cen-
ter/University of Montana, nd.) H.L. Swits,
It is critical to establish a consis- veloping population-wide education- M. Furletti, and B. Vladeck, Palliative Care:
tent message to business leaders. al and outreach programs emphasiz- An Opportunity for Medicare (New York: In-
While many hospices are not for ing that hospice is no longer just stitute for Medicine Practice, nd). C.K.
profit, they must convert their out- about death and dying. National hos- Cassel and K.M. Foley, Principles for Care of
comes into economic terms. For ex- pice foundations whose goals are Patients at the End of Life: An Emerging Con-
sensus among the Specialties of Medicine,
ample, hospice decreases total costs public engagement and public em- (New York: Milbank Memorial Fund,
for the employer by: powerment over care at the end of life 1999). M.D. Mezey et al., Guidelines for
are encouraged to work with and ex- End of Life Care in Nursing Facilities: Princi-
! decreasing lost productivity at
pand their campaigns and other edu- ples and Recommendations (New York: John
work by providing support in the A. Harford Foundation Institute for Geri-
cational efforts, refraining from asso-
tasks of caregiving, as well as a re- atric Nursing, 2001). National Hospice Or-
ciating the word “hospice” with its ganization, Nursing Home Task Force Report
sponse to stress of conflicting pri-
structural attributes (such as the inter- (NHO: Arlington, Va, 1998). Education
orities and unresolved grief;
disciplinary team) and its intimate Development Center, Meeting the Chal-
and singular association with suffer- lenge: Twelve Recommendations for Improving
! diminishing the cost of sec- End-of-Life Care in Managed Care (Newton,
ing and imminent death in favor of a
ondary illness of the employee Mass.: EDC, 1999).
more positive message about the ben-
caregiver that is the result of care- 5. S.R. Connor, “New Initiatives Trans-
efits of hospice programs: comfort, forming Hospice Care,” in The Hospice
giver burden;
safety, choice, and support in re- Heritage: Celebrating Our Future, ed. I.B.
sponding to the life consequences as- Corless and Z. Foster, (Binghamton, N.Y.:
! serving as an alternative to less
sociated with illness and disability, Haworth Press, 1999), 193-203.
appropriate long-term care and
particularly during life’s “third act.” 6. President’s Commission for the Study
home care; and of Ethical Problems in Medicine, Securing
2) Within the hospice community
Access to Health Care, Volume One: Report
new educational programs (both pre-
! providing consultation to (U.S. Government Printing Office, Wash-
service and in-service) should be de- ington, D.C., 1983), 4.
management on issues they will
veloped to equip hospice providers to 7. S. Stoddard, The Hospice Movement: A
inevitably and repeatedly face re-
meet the challenges of expanded ac- Better Way of Caring for the Dying (New
lated to employee absenteeism as
cess to hospice, both in terms of ex- York: Vintage, 1992). See also M. Webb,
well as coping with the tasks and The Good Death: The New American Search
panding hospice care “upstream” to
stress of caregiving and grief. to Reshape the End of Life (New York: Ban-
include meeting the complex clinical tam, 1997).
In the face of an aging workforce and psychosocial needs of patients at 8. World Health Organization, Cancer
and a shrinking labor market, the earlier stages of possibly fatal illness Pain Relief and Palliative Care, Technical
health and productivity of workers is and in terms of expanding hospice Report 804 (Geneva: WHO, 1990).
critical to business success. Regardless outward to incorporate more patients 9. L.A. Aday, R. Andersen, and G.V.
of the level of their own financial with a variety of non-cancer diag- Fleming, Health Care in the U.S.: Equitable
contribution, employers must find noses and personal living situations. for Whom? (Beverly Hills, Calif.: Sage Publi-
cations, Inc., 1980).
ways to ensure that the physical and
10. In hospice, one example is the re-
psychological health needs of em- References
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Nursing 2 (2000), 65-72.
SPECIAL SUPPLEMENT/ Access to Hospice Care: Expanding Boundaries, Overcoming Barriers S59
The following individuals took part in various project meetings and as- stitute); Patti Moore (The Watershed Group); Mary McCarthy (Hospice
sisted with the project: Pam Barrett (Hospice and Palliative Care of and Palliative Care of Cape Cod); Pat Murphy (Hospice of Martin and St.
Greensboro, N.C.); Samira Beckwith (Hope Hospice); Paul Brenner Lucie); Naomi Naiemnan (American Hospice Foundation); Hilde L. Nel-
(Children’s Hospice International); Helen Burstin (AHRQ); Courtney S. son ( Michigan State University); Sally Okun (Center for Life Care); Joe
Campbell (Oregon State University); John Carney (NHPCO); David O’Neill (White House Office of National AIDS Policy); Gregory Pappas
Cassarett (University of Pennsylvnia); David Clark (University of (Office of the Surgeon General); Jeannee Parker Martin (The Corridor
Sheffield, UK); Jan Cetti (San Diego Hospice); Chris Cody (NHPCO); Group); Kate Payne (Clinical Ethics Center); Dottie Pitner (Palliative
Robert d'Antuono (Mt. Sinai Hospital, N.Y.); Deborah Dailey (Hospice of Care Center and Hospice of the North Shore); Christina M. Puchalski
Dayton); Dorothy Deremo (Hospice of Michigan); Pam Doty (EAP); (George Washington University); David Rehm (Vistacare); David Simp-
Susan Drongowski (Nathan Adelson Hospice); M. Garey Eakes (Part- son (Hospice of the Western Reserve); Bev Sloan (Hospice of Metro
nership for Caring); David English (Hospice of Northern Virginia); Dave Denver); Brad Stuart (Sutter VNA and Hospice); Claire Tehan (Trinity
Fielding (Hospice of Palm Beach County); Richard Fife (VITAS); Care Hospice); Joan Teno (Center for Gerontology and Health Care Re-
Thomas Hoyer (Centers for Medicare Services); Walter Hunter (Vis- search at Brown Medical School); Ann Morgan Vickery (Hogan and
tacare); David Kessler; Jonathan Keyserling (NHPCO); J. Thomas Kout- Hartson, LLP); Charles von Gunten (San Diego Hospice); Myrl Wein-
soumpas (VITAS); Vincent Lafronza (National Association of City and berg (National Health Council), Vicki Weisfeld (Robert Wood Johnson
County Health Officials); Howard Lerner (HRSA); Mary Lerner (Hospice Foundation); Christy Whitney (Hospice and Palliative Care of Western
Foundation of Central New York); Joanne Lynn (RAND); Keith Meador Colorado); Ann M. Wilkinson (RAND); Analee Wulfkuhle (Home and
(Duke University); Kathleen C. Milne (RAND); Marilyn Moon (Urban In- Hospice Care of Rhode Island); and Matthew Wynia (AMA).
On the cover:
Knowing How, ©Diedre Scherer, 1994, 17”x20”, fabric and thread Photo: Jeff Baird
. . . . .T. . H. . .E. . . . .
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