J R Soc Med 2001;94:433-436
© 2001 Royal Society of Medicine
Remembering death: public policy in the USA
Christine K Cassel MD
Beth Demel MPA
Brookdale Department of Geriatrics and Adult Development, Mount Sinai
School of Medicine, One Gustave L Levy Place, Box 1070, Annenberg Building,
New York, NY 10029, USA
Correspondence to: Christine K Cassel MD E-mail:
christine.cassel{at}mssm.edu
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INTRODUCTION
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In 1997, the Robert Wood Johnson Foundation funded the Last
Acts project
designed to educate the public, policymakers, and
healthcare professionals on
issues surrounding end-of-life care.
The following precepts of palliative
care, developed by the
Last Acts Palliative Care Task Force, affirm a vision
of better
care:
- Respecting patient goals, preferences and choices
- Comprehensive caring
- Utilizing the strengths of interdisciplinary resources
- Acknowledging and addressing caregiver concerns
- Building systems and mechanisms of support.
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PAST TRENDS
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Why, at the beginning of the twenty-first century, do we need
a grassroots
movement to help us learn something as basically
human as how to die? We need
to relearn death because people
today die in a different way from our
forebears: we tend to
die older, from different causes and in different
environments.
In 1900 people often died at home, surrounded by family.
Physicians
routinely comforted the dying and their families. In the past
century,
medical and public health advances have almost doubled the average
life
expectancy, from less than 50 years to near
80
1. People who
die
in old age tend to experience a long period of functional
decline before
death, and thus require intensive caregiving
and well-coordinated medical
care. As medical advances allowed
us to delay death, we moved death out of the
home and into institutions.
Today, although most people say they would prefer
to die at
home, 56% die in hospital and 19% in nursing
homes
2.
Remembering death
In the USA, we became so caught up in our ability to cure disease that our
healthcare system forgot that death is inevitable. When Medicare, the federal
health insurance programme for older Americans, was enacted in 1965, it was
largely intended to reduce the financial burden of episodic, acute, hospital
stays on families. In an attempt to remember death and reduce costly inpatient
hospital stays at the end of life, Medicare established a hospice benefit in
1983. Hospice was seen as an alternative for use when life-prolonging options
had been exhausted. The Medicare hospice benefit is available only to patients
whose doctors are willing to certify they have a life expectancy of six months
or less, who agree to receive only palliative care and who have a full-time
primary caregiver. Despite its good intentions, the hospice benefit does not
help everyone; it remembers only certain types of death.
Hospice in the USA works well for people with reasonably predictable
diseases, especially end-stage cancer. At least 60% of hospice enrollees have
a cancer
diagnosis3,4.
It is less helpful for people with less predictable diseases, such as heart
disease, or diseases with a long period of decline, such as Alzheimer's.
Hospice works well for late-stage AIDS patients, but prognostication in AIDS
is harder than in cancer.
The recent history of the palliative care movement in the USA has been
driven largely by Medicare funding. When Congress approved the Medicare
hospice benefit, it dramatically altered how and where hospice care was
provided. The number of hospice admissions immediately increased; by 1985, 40%
of people dying of cancer were enrolled in hospice. Because the Medicare
hospice benefit emphasizes home care, hospices that had been built around an
inpatient model changed the way they operated, shifting their emphasis to home
care in order to qualify for Medicare reimbursement. As Lukashok writes,
‘By providing a hospice benefit under Medicare, the government has, in
effect, defined what a hospice
is’3.
Medicare did more than define hospice when it limited hospice eligibility
to a certain type of dying patient—a patient with a home, a caregiver
and a terminal diagnosis with an easily predicted disease course. The
government also determined who would probably receive end-of-life palliative
care and who would not. Medicare's hospice eligibility rules have curtailed
the development of a broader palliative care movement in the USA, and until
very recently few palliative care programmes emphasized treatment of pain and
other symptoms in conjunction with attempts to cure disease.
Medicare's hospice eligibility rules have led to a decreased length of
hospice stay; many patients do not enter hospice until their final days, when
opportunities to reap maximum benefit have been lost. Because of the six-month
rule, hospices may hesitate to accept patients until death is clearly imminent
to avoid being charged with Medicare fraud or abuse. With many diseases it is
impossible for physicians to feel confident predicting death within six
months. Similarly, the six-month prognosis and the requirement to stop
life-prolonging efforts have the implication of giving up—something that
neither doctors nor families are comfortable doing.
The Medicare hospice benefit was a good step towards a public
acknowledgment that people die, and that care for the dying is a valuable part
of healthcare. We now need to expand hospice to enable more people to receive
excellent end-of-life care, and we need to apply the precepts of palliative
care to all care, not just care at the end of life. Various clinicians around
the USA have begun to accomplish these goals, and some have documented their
experiences inspiringly in the monograph Pioneer Programs in Palliative
Care: Nine Case
Studies5.
Public policy, pain relief and physician-assisted suicide
Unfortunately, too few patients receive adequate end-of-life palliative
care. The Study to Understand Prognoses and Preferences for Outcomes and Risks
of Treatments (SUPPORT) documented the type of care dying patients in teaching
hospitals preferred, and how closely their wishes were followed. The
investigators found that patients' wishes were frequently not followed, and
that pain was common. Half the patients able to communicate in the last three
days of life said they were in severe pain. These findings demonstrated the
need for hospitals and health systems to pursue a higher standard for
end-of-life care and motivated many doctors to improve the end-of-life care
they provided6. The
next challenge for the medical profession is to pursue a higher standard for
palliative care throughout the life-span.
In the 1990s, the most public image of the ‘death with dignity’
movement was Jack Kevorkian and the debate he ignited over physician-assisted
suicide. As a result of this debate, Oregon became the first State to legalize
assisted suicide in certain situations. The fact that Oregonians voted twice
to legalize physician-assisted suicide indicates that many Americans are not
happy with how they perceive their end-of-life options. Yet, to judge by the
small number of people who have committed suicide under Oregon's law, public
demand for suicide is
low7,8.
The real message for medicine from the physician-assisted-suicide movement is
that the public is afraid to die in our hospitals. There is good reason for
this6.
The moral debate surrounding the passage of Oregon's law has had several
positive effects on palliative care in the USA. First, it served as a wake-up
call for doctors who had previously ignored the fact that their patients need
good care when they are dying, not just when they are recovering. Also, since
Oregon's law requires patients and their doctors to take all other steps to
relieve suffering before assisted suicide becomes a legal option, the law
seems to have forced healthcare professionals to improve the quality of
palliative
care9.
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TRENDS IN PALLIATIVE CARE
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Most Americans say they would prefer to die at home. But, as
The
Dartmouth Atlas of Health Care 1999 reports, depending on
where they
live, anything from 20% to more than 50% of Americans
die in hospital. People
are more likely to die in hospital in
regions well supplied with hospital beds
(
Figure
1)
10,11.
The
Dartmouth Atlas findings show
that
10:
- Among Medicare enrollees, 15% to more than 50% will experience at least one
stay in an intensive-care unit during the last six months of life
- On average, 11% of Medicare enrollees will spend seven or more days in
intensive care during the last six months of life
- As many as 30% of Medicare enrollees will be admitted to intensive care
during their terminal hospital stay.
We do not know the right number of hospital deaths, and this
number may vary depending on the numbers of old people living alone, patterns
of illness and financial
context10,11.
However, since we do know that most American deaths occur in institutions,
clinicians must provide good palliative care wherever the patient is. The
following case reports illustrate why we need positive, realistic, end-of-life
options outside of the home.
- Case 1
Mrs P is an 88-year-old widow dying of colon cancer. Her grown children
live in other States and cannot visit for extended periods of time. For Mrs P
a hospital or subacute unit might be a more supportive environment than her
home. Even if she could afford a full-time paid caregiver at home, she is
unlikely to have as many different types of social and caregiving contacts at
home as she would in a structured caregiving setting such as a nursing home or
an impatient hospice programme. Unfortunately most nursing homes are not
equipped to provide the intensive sophisticated palliative care services that
a terminal cancer patient requires; and inpatient palliative care services or
hospices can only serve patients with short life expectancy (a few days to a
week). In the USA there is no good option for Mrs P under the current
system.
- Case 2
Ms A is a 29-year-old single mother dying of AIDS. She has valiantly fought
her illness and is not ready to die. Yet when she comes into the hospital with
her final infection, the intravenous antibiotics cannot save her. She dies in
the hospital because she has been receiving curative care that would have been
unavailable at home, but she is also able to benefit from palliative services
aimed at making sure she is comfortable and helping her family come to terms
with her imminent death. Not everyone who dies in a hospital has accepted
death; many are still hoping for cure.
- Case 3
Sam, age 18, is brought into the intensive-care unit with serious head
injuries sustained in a motorcycle accident. It is clear that he will die
within a few days. To move Sam from the hospital back to his home, a studio
apartment where he lives alone, would be senseless. Sam will die in the
hospital because there is no other reasonable option.
- Case 4
Mrs M is a woman of 65 with late-stage ovarian cancer. She is eligible for
hospice, and this sort of care appeals to her, but her 70-year-old husband
cannot cope with her physical needs and she feels uncomfortable having her
children see her bloated body and deal with her draining wounds. Instead, she
opts to enter a hospital-based palliative care programme so that professionals
can care for her physical needs and her family have the time and energy to
provide emotional support. The problem with this option is that, if life
expectancy is greater than one to two weeks, the hospital is not an
appropriate or sustainable option.
People with serious illnesses and their families have diverse needs. To
accommodate these needs, clinicians are creating new palliative care delivery
models in the USA. Palliative care, including hospice, can be provided in a
variety of settings including the hospital, the nursing home and the patient's
own home. To learn more about the extent to which these models have been
instituted throughout the USA, the Robert Wood Johnson Foundation funded the
Center to Advance Palliative Care, based at the Mount Sinai School of Medicine
in New York City, to survey more than 2000 hospitals nationwide, asking them
if they had palliative care or pain programmes and, if so, what
type12. The
percentages for each model described below represent the breakdown of types of
programmes within hospitals that had palliative care or pain programmes. They
do not add up to 100 because some hospitals have more than one type of
programme:
- Consultation service (43%)—a team composed of doctors and
nurses, typically with a social worker and/or bereavement counsellor, sees
patients with palliative care needs anywhere in the hospital
- Dedicated inpatient unit (23%)—palliative care beds are
clustered in one area of the hospital, concentrating together patients with
similar needs. A dedicated unit, which may be combined with the consultative
service, provides visibility and may enhance acceptance of palliative care by
hospital staff
- Combined hospice—palliative care unit
(36%)*—inpatient
unit serves both hospice patients and hospital patients with palliative care
needs
- Community hospice—hospital contract
(36%)*—through a contractual arrangement with a community
hospice programme, a hospital provides palliative care in an inpatient unit.
This model expands Medicare payment options available to hospitals for these
palliative care services, since they are reimbursed (albeit inadequately)
through the Medicare hospice benefit
- Hospital outpatient palliative care clinic (32%)—clinic
operates in conjunction with consultative service or inpatient unit to provide
continuity of care after discharge from the hospital. This model promotes care
continuity and is often linked to home visiting programmes.
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THE FUTURE OF PALLIATIVE CARE: CHALLENGES AND STRATEGIES
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Care for the dying in the USA is largely publicly funded: almost
three-quarters
of those who die each year are over-65 and on Medicare, and
many
others are insured by a combination of Medicare and Medicaid.
Therefore,
government policies are of major importance in determining
what kind of care
people at the end of life
receive
12.
However, if our goal is to integrate palliative care into all areas of
medicine, not just end-of-life care, reform must extend beyond the way the
government pays for healthcare. Current barries to providing adequate
palliative care in the USA include: (1) financing mechanisms, (2) inadequate
supply of trained physicians, (3) no continuity of care, (4) cultural
issues—seeing death as a failure; a discomfort in talking about
death—and (5) physician attitudes.
The barriers to palliative care can be surmounted as follows:
- Create recognition for a strong board-certified specialty of palliative
medicine—this would provide credibility to the field while
attracting medical leaders and encouraging the expansion and improved
understanding of the existing knowledge
base13
- Improve the way Medicare pays providers and institutions for palliative
care—Medicare inadequately pays physicians who offer time-consuming
palliative-care consultations. Also, the ‘diagnostic related
group’ system for Medicare inpatient hospital payments does not
specifically recognize the relief of suffering as a legitimate goal of
hospital admission. More research is needed to determine the best way to
provide palliative care to all who need it while fairly compensating those
institutions that provide it
- Relax Medicare's hospice eligibility rules—to make hospice
accessible to people dying of any disease, including diseases less predictable
than cancer
- Educate medical providers—palliative care should be taught
at the medical undergraduate and graduate levels. Good palliative care
requires high-tech knowledge of pharmacology and symptom management as well as
medical ethics, and cannot be learned in one or two lectures
- Educate consumers—consumers should expect, demand, and hold
health providers accountable for providing high-quality palliative care.
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Footnotes
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* The study grouped these two categories together. 36% of respondents
offered
one or both of these models of care (combined hospice-palliative
care unit or
community hospice-hospital contract).
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REFERENCES
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Rowe J, Kahn RL. Successful Aging. New
York: Pantheon Books, 1998
-
Data from the National Center for Health Statistics National
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[http://www.cdc.gov/nchs/releases/98facts/93nmfs]
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Bosanquet N. Patterns of use of service. In: Bosanquet N, Salisbury
C, ed. Providing a Palliative Care Service: Towards an Evidence
Base. Oxford: Oxford University Press,1999
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National Hospice Organization Fact Sheet, 1999
[http://www.nho.org]
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The Robert Wood Johnson Foundation and the Milbank Memorial Fund.
Pioneer Programs in Palliative Care: Nine Case
Studies. New York: Milbank Memorial Fund,2000
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The SUPPORT Principal Investigators. A controlled trial to improve
care for seriously ill hospitalized patients: the Study to Understand
Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).
JAMA1995; 274:1591
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Chin AE, Hedberg K, Higginson GK, Fleming DW. Legalized
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Ganzini L, Nelson HD, Schmidt TA, Kraemer DF, Delorit MA, Lee MA.
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Wennberg JE, ed. The Dartmouth Atlas of Health Care
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INTRODUCTION
PAST TRENDS
