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Enhancing Awareness of Hospice Through

Physician Assisted Living: Public Health Perspectives

MICHAEL MERSON, M.D. AND ELIZABETH H. BRADLEY, Ph.D.

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.

 


     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

 

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

 


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

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.

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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