Enhancing Awareness of Hospice Through
Physician Assisted Living: Public Health Perspectives
MICHAEL MERSON, M.D. AND ELIZABETH H. BRADLEY,
Ph.D.
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ABSTRACT—The provision, management, and financing of care
for patients with irreversible diseases has become increasingly
complex in this era of advanced medical technology. With enhanced
capabilities of medicine to prolong life, clinical practice has
taken on legal and ethical dimensions that reach beyond the traditional
scope of medicine. This paper demonstrates that hospice represents
a major area of public health practice and research. It argues for
enhanced involvement of public health practitioners and academics
in the design and evaluation of efforts to encourage appropriate
use of hospice for patients with irreversible diseases. The physician
assisted living intervention in Connecticut represents one such
effort. However, ongoing educational efforts targeted at both the
public and health care providers are needed to ensure that all those
with irreversible diseases fully understand and have access to hospice
care at the end of life.
The
provision, management, and financing of care for
patients with irreversible diseases has become increasingly complex
in this era of advanced medical technology. With enhanced capabilities
of medicine to prolong life, clinical practice has taken on legal
and ethical dimensions that reach beyond the traditional scope of
medicine. The nature and pace of such changes challenge conventional
wisdom about appropriate care, the role of physicians, and the roles
of other heath-care professionals in promoting quality of life for
terminally ill patients and
MICHAEL MERSON, M.D., Dean of Public Health, professor
and chairman of the Department of Epidemiology and Public
Health, director of the Center for Interdisciplinary Research on Aids at
Yale University School of Medicine. ELIZABETH H. BRADLEY,
Ph.D., is assistant professor of Public Health, Yale University School of Medicine. |
their families. Within this context, public heath perspectives
can make important contributions to understanding, evaluating, and
improving the care of terminally ill patients and their families,
as well as the community in which they live. The intention of this
paper is to demonstrate that hospice represents a major area of
public health practice and research, and that the physician-assisted
living intervention is an important step in enhancing awareness
of the hospice alternative.
There
have been many attempts to define public health. These definitions
demonstrate the evolution of a field, continually being reinvented
to meet the health needs of the public as knowledge of disease,
methods of prevention, and systems of care have evolved in the early
19th century, public health measures focused on enhanced sanitation
and reduced communicability of disease. The bacteriologic and immunologic
discoveries of the late 19th and early 20th centuries offered disease
prevention as a powerful approach to enhancing the health of the
public, and prevention became a cornerstone of public health practice
populations.1 In 1920 a more comprehensive view of public
health was articulated by Charles E-A Winslow, defining public health
as "the science and art of l) preventing disease, 2) prolonging
life, and 3) promoting health and efficiency through organized community
efforts."2 Winslow's view of the field recognized
the central role of social sciences in public health and thus foreshadowed
the continually evolving nature of the field, changing with the
social definitions, expectations, and systems of health. Today,
health is defined by the World Health 0rganization as the "state
of complete physical , mental, and social well-being." Given
this comprehensive view of health, the principles of hospice and
the notion of physician-assisted living are wholly consistent with
the goals and activities of public health.
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Several
aspects of hospice and physician-assisted living are particularly
germane to the skills and objectives of the public health professionals.
The most fundamental of these aspects is the tenet that the patient
and family constitute the unit of care in its founding principles,
hospice defines its goal as caring for both patients and their families.
This explicit recognition that health is a social phenomenon, and
that patients' well-being (or lack thereof) can have profound effects
on family and community, broadens the approach of hospice beyond
the traditional medical models of health and thus incorporates a
public health perspective into the planning and provision of care.
To date,
several studies have investigated empirically the effects of hospice
care on the quality of life of both patients3,4 and their
families.5,6 These studies generally demonstrate enhanced
satisfaction with care and life among those receiving hospice rather
than conventional care.3,4 With some exception,7
data confirm that family members and care givers of patients receiving
hospice rather than conventional care experience greater satisfaction
and reduced bereavement burden after the patient's death.5,6
Such benefits might be felt throughout a community as survivors
are more able to continue their social and productive roles in the
larger society. Together, the principles and empirical evidence
regarding hospice care demonstrate its commitment to the health
and well-being of not only the patient but also individuals supporting
and supported by the patient. Such a view of health and of health
promotion among families and communities emphasizes the public health
nature of hospice.
A second
aspect of hospice that demonstrates the relevance of hospice to
public health professionals is its focus on the multiple facets
of health, including emotional, psychological, and spiritual well-being.
Hospice care, with its attention to improving life during advanced
stages of irreversible diseases, includes activities beyond the
provision of medications and other traditional medical interventions.
These activities include active and passive listening encouraging
creativity with arts and music, therapeutic touch, and emotional
and spiritual healing. Such interventions are central to caring
for the whole person, not only the physical manifestations of disease.
This integration of physical, psychological, emotional, and spiritual
care exemplifies a perspective widely shared in public health practice.
A third
characteristic of hospice that is consistent with the public health
perspective is the involvement of interdisciplinary teams in the
planning and provision of care. Such teams include physicians, nurses,
social workers, clergy, and community volunteers who plan, provide,
and assess various approaches to care for patients and their families.
Similarly, interdisciplinary coordination is a hallmark of effective
public health practice. Like hospice
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care givers, the training and backgrounds of public health professionals
are widely diversified including medicine, nursing, law, statistics,
economics, and political science, to name but a few. Thus, again,
the principles and practices of hospice are consistent with and,
in many ways, exemplify the public health approach to caring for
terminally ill patients and their families.
While
hospice represents the public health approach to care of patients
with irreversible diseases, awareness of its potential effect on
the health of patients, their families, and the larger communities
remains limited. Such limited awareness has been demonstrated directly
through national surveys8 and implicitly through multiple
studies demonstrating infrequent discussions among physicians, patients,
and families concerning alternative approaches to end-of-life care.9,10
Nevertheless, public health professionals to date have been fairly
silent about their potential embracing of and contribution to hospice
and palliative care.
Now
is the time to reconsider this silence and recognize the important
role of public health in end-of-life care generally and hospice
care specifically. The field of public health offers substantial
expertise in two areas central to promoting the hospice alternative:
the design and evaluation of effective educational campaigns to
enhance awareness and appropriate use of such services. Health education
has always been important functions of public health professionals.
Further, within public health, it has long been recognized that
it is not enough to present information.1 Educational
efforts that effect change require an understanding of how individuals
and groups view various conditions and how they might be motivated
to adapt or alter those views to enhance their welfare. In this
way, current public health educators may act as agents of social
change.
A public
health approach to health education is essential to effecting appropriate
patterns of care at the end of life and alleviating what empirical
data suggest is common place: deaths that are prolonged, mechanically
supported, and painful.11 A number of educational campaigns
to increase public awareness of alternatives at the end of life
have been initiated. These include federal efforts to enhance awareness
of advance directives through the Patient Self-Determination Act
of 1990 (PSDA), as well as the recent implementation of Physician
Assisted
Living
(PAL) in Connecticut PAL is an effort by the Office of the Attorney
General to enhance public awareness of hospice principles and to
facilitate discussion of hospice care as an option for patients
with irreversible diseases. Currently, under the federal PSDA, all
patients admitted to health care organizations receive written information
concerning their right to refuse unwanted treatment and to complete
advance directives. Advance directives are legal documents that
describe medical treatment
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wishes in case the individual becomes
unable to make decisions for herself in the future. PAL is an effort
to expand the scope of written information received to include the
10 principles of hospice as well as an optional election of hospice,
should one become terminally ill in the future.
Will PAL be effective? Evaluation
of the PSDA has demonstrated mixed results, with impact on public
awareness of advance directives and advance directive completion
being measurable though somewhat limited.12-14 Like the
PSDA, PAL will likely have measurable impact on public awareness
of treatment alternatives for those with irreversible disease. The
effort should be understood as an important step but one that must
be augmented with ongoing educational efforts of both the public
and health care providers. Given the emotional and ethical dimensions
of care at the end of life, successful educational efforts in this
area must involve broad and varied perspectives. The efforts must
be credible within existing medical systems yet continue to challenge
physicians, patients, and families to recognize the many dimensions
of health, explicitly recognizing hospice as an option when curative
efforts are no longer effective. Public health practitioners and
academics alike can make important contributions to these efforts
of change.
REFERENCES
1.Pickett G, Hanlon J: Public Health Administration
and Practice.
Boston: Times Mirror/ Mosley College Publishing;
1990
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2.Winslow CE-A: The untitled field of public health.
Mod Med 1920;
2:183.
3.Seale C: Comparison of hospice and conventional
care. Soc Sci
Med 1991;32:147-53.
4.Wallston K, Burger C, Smith RA, Baugher R: Comparing the quality
of death for hospice and non-hospice cancer patient. Med Care
1988; 26:177-82.
5.Kane RL, Klein SJ, Bernstein L, Rothenberg
R: Hospice role in alleviating the emotional stress of terminal
patients and their families. Med Care 1985; 23:189-97.
6.Godkin M, Krant M, Doster N: The impact of hospice care on
families. Internal J Psychiatry Med 1983;
13:153-65.
7.Dawson N: Need satisfaction in terminal care setting. Soc
Sci Med
1991; 32:83-7.
8.Mor V, Hendershot G, Cryan C: Awareness of
hospice services:
Results of a national survey. Pub Health Rep
1989; 104:178-3.
9.Hofman J, Wenger N, Davis R, et al: For the SUPPORT Investigators
Patient and preferences for communication with physicians about
end-of-life decisions. Ann Intern Med 1997; 127:1-12.
10.Rosenberg E, Lussier M, Beaudoin C: Lessons
for clinicians from physician-patient communication literature.
Arch Fam Med 1996; 6:279-83.
11.SUPPORT Principal investigators: A controlled trial to improve
care for seriously ill hospitalized patients: The Study to Understand
Prognosis and Preferences for Outcomes and Risks of Treatment
(SUPPORT). JAMA 1995; 274:1591-8.
12.Emanuel E, Weinberg D, Gonin R, et al: How
well is the Patient
Self-Determination Act Working? Am J Med 1995; 95:619-28.
13.Bradley E, Blechner B, Walker L, Wetle T:
Institutional efforts to promote advance care planning nursing
homes. J Law Med Ethics 1997: 25:5-14.
14.U.S. Congress, U.S. General Accounting Office:
Patient Self- Determination Act Report to the Ranking Minority
member, Subcommittee on Health, Committee on Ways and Means, House
of Representatives GAO/HEHS-95-135 Washington D.C., U.S. Government
Printing Office. August 1995.
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The Physician's
Role as Care Giver
The
American medical community finds itself in the middle
of a debate on what the appropriate role should be for
physicians at the end of life. Should the physician,
like Jack Kevorkian, help patients terminate their lives
when life becomes a "living hell," endless
torture, a series of painful hopeless days, each one
more dreary than the next? Or rather should the physician
help the patient within the family to find comfort and
maintain dignity by actively managing pain and other
distracting and devastating symptoms? When the question
is framed this way the choice is obvious: the physician
must strive to help the patient maintain a reasonable
quality of life in the face of terminal and irreversible
illness. After all, we are care givers, not morticians!
This is the essence of hospice care: maintaining quality
of life!
Myth #1: Hospice care means abandoning the patient.
Reality:
Hospice care does not mean that the physician has
given up on the patient it does not mean that the patient
is foregoing treatment. Rather it sees the patient within
her family unit and strives to maximize the quality
and comfort of her final days. The earlier hospice care
is initiated the more effective the patient's treatment
can be. Aggressive pain management is the farthest thing
from withdrawing care.
Myth #2: Hospice puts patients in
a drug-induced coma.
Reality:
Hospice care is not equivalent to a narcotics stupor.
Palliative care becomes like drug therapy when it is
initiated so late in the disease process that there
is little time remaining to affect the outcome. The
beauty of hospice care is that it uses so many modalities
to enhance patient comfort: art therapy, pastoral care,
social work, and trained volunteers.
The
PAL initiative, by educating both the physicians and
the public about the choices available to them early
on in the disease process, will assist physicians in
providing high quality end-of-life care to their patients
it will make it easier for physicians to initiate a
discussion about choices in care modalities and patient
preferences for the future. By putting these preferences
in writing, confusion among care givers and unwanted
medical procedures are less likely to occur.
Myra L Skluth, M D.
Chief of General Internal Medicine at Norwalk Hospital,
and associate medical director of Connecticut Hospice (Norwalk office) |
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