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Growth House > National Hospice Work Group > Relevance of Public Health Essay

The Relevance of Public Health in Improving Access to End of Life Care

By Carol D'Onofrio, PhD and True Ryndes, ANP, MPH

Addressing the ethical basis for improving access to hospice requires considering not only the needs of dying individuals, but also the needs and resources of family, community, and society. Thus a population based public health model is clearly relevant to the question of access. But while a public health model could make many critical contributions to improving end of life care, it is also limited. Extending the model to encompass concern for the dying may be prerequisite to engaging the public health community. There are three possible ways to expand the model.

Health Promotion and Disease Prevention

The goals and scope of public health in the U.S. reflect the World Health Organization's classic definition of health as "not merely the absence of disease, but optimal physical, mental, and social well-being." Applied to the dying, our consumer stakeholders viewed this definition as including attention to the relief of pain and suffering, maintenance of an individual's functional abilities and social relationships to the extent possible, reflections on the meaning of life, peaceful life closure, and support for grieving family members. Hospice embodies these values [1] and therefore increasing access to hospice can be viewed as promoting the health of people near the end of life.

Hospice cares for dying patients at home or in a homelike environment where they generally feel safest and most comfortable and have the greatest degree of control. Interdisciplinary hospice teams prevent patient isolation and abandonment, fragmentation of services, unnecessary hospitalizations, and avoidable stress to patients and families. Hospice standards promote patient choice, resolution of intra- and interpersonal problems, and growth at the end of life through coaching and therapeutic guidance. Hospice also goes beyond the traditional medical model by including the family in both the unit of care and the caregiving team, by working to relieve unbearable caregiver burden, and by maintaining supportive contact with grieving family members after their loved one's death.

The notion of health promotion for the dying is consistent with public health efforts to enhance quality of life, but appears incompatible with the emphasis in the United States on increasing longevity. Consequently, the public health model does not provide a compelling rationale for including quality of dying in the nation's health promotion mission. Even if this obstacle can be overcome, public health weighs competing demands for scarce health promotion resources by assessing probable intervention outcomes in terms of Quality-Adjusted Life Years (QALYs) and other metrics that cannot capture the benefits of hospice care to patients and therefore doom it to low priority. For both of these reasons, focusing on the potential of hospice to reduce morbidity and prevent premature mortality among patients, their family members, and other caregivers may be more productive in engaging public health's intellectual and organizational resources.

Hospice professionals have long observed that the care they provide appears to reverse the decline of some dying patients. Hospice care also may prevent suicide and suicide ideation among terminally ill persons suffering from despair, severe pain, and acute depression. [2] Hospice may have an even greater impact in preventing excess morbidity and mortality in family members who care for the dying [3] and mourn their loss. Elevated mortality following bereavement has been documented in Europe [4] [5] and the United States, [6] while an extensive literature links bereavement to poor mental health, including post traumatic stress disorder. [7] Although studies are needed to assess the extent to which hospice care can reduce these negative sequelae of dying, the significance of these problems will increase with growth of the elderly population in the U.S. and related care-giving burdens of family members. Public health therefore may be attracted to the preventive potential of hospice.

Vulnerable Populations

Public health seeks to protect those most at risk of injury, disease, and negative health consequences throughout the life course. Protecting children and youth has long been a priority, with special emphasis on perinatal health because the vulnerability of both mothers and infants is heightened during pregnancy, birth, and the months following. Public health has largely ignored the heightened needs, dependency, and increased vulnerability of people at the other end of life. Nevertheless, enormous numbers of Americans die an anticipated rather than sudden death, and many credible studies indicate that dying outside of hospice does not go well. Patients receive care from multiple providers in a variety of separately governed and poorly communicating settings. Many are forced to endure futile therapies and procedures they do not want in an environment which takes away their sense of control and neither acknowledges nor meets their individual needs. Distress from pain and other symptoms often goes unrelieved, and spiritual anguish is neither diagnosed nor treated. Fear of being a physical and financial burden to families is common.

These characteristics complete a full portrait of what Dame Cicely Saunders referred to as "total pain." Others equate these conditions with torture. Although it has been said that "nothing is worse than death," the continuation of such very bad circumstances may be a worse option both from the viewpoint both of patients and families and of a society concerned about the effective use of its resources. Nonetheless, reflecting medical culture and American culture generally, public health has denied death or regarded it as defeat. Consequently, public health advocacy and services for victims of war, political torture, and other violence have not been paralleled by concern for the silent victims of bad dying. No protest has been mounted against futile treatments or unwanted resuscitation. Fear that administering pain medication will result in addiction has been recognized as an unintended side effect of the War on Drugs, but few steps have been taken to ameliorate this problem. Perhaps refocusing on the plight of those living the last stages of life will awaken public health concern for the vulnerability of the dying. Public health's strong moral commitment to social justice and the reduction of health disparities demands no less.

Core Functions

A 1988 report found the U.S. public health system in disarray, but its fundamental problem-solving capacity intact. [8] Subsequently, some progress has been made in strengthening the public health infrastructure, most recently to protect the nation against bioterrorism; however, the system still is ill prepared to handle the unprecedented challenges arising from rapid growth of the elderly population. [9] [10] Public health therefore needs to confront these issues through its core functions of assessment, policy development, and service assurance. [11] Acknowledging as part of this initiative that dying is the inevitable outcome of chronic disease and aging would enable public health leaders to contribute significantly to improving end-of-life care.

It would be helpful to have a Surgeon General's report on the health implications of dying from chronic disease to complement a 2002 report which indicates that chronic diseases are responsible for seven of every ten deaths in America and 75 percent of the one trillion dollars spent annually on health care in the United States. [12] Consolidating available data on care of the dying within a public health framework would focus attention on this vulnerable population and their family members, provide strategic guidance to organizations working to improve end-of-life care, identify ways in which public health can contribute to this effort, and create a path-breaking resource for public education and community involvement. Most important, such a report would lay the foundation for additional public health assessment, policy development, and service assurance to improve care of the dying.

Public health also could contribute to problem analysis by studying the "epidemiology of bad dying," developing new metrics to measure the extent to which currently recognized outcomes of "a good death" are being achieved, [13] and assessing unmet population needs. In this regard, questions about the dying might be added to surveys monitoring progress toward the Healthy People 2010 objectives, [14] particularly those concerned with functional status and access to needed health services. The World Health Organization's 1990 Cancer Pain Initiative [15] provides a valuable prototype for examining available interventions and resource requirements as the basis for public health policy development and service assurance. [16] The Turning Point initiative [17] offers opportunities to involve states and communities in transforming the public health system to assure compassionate care for the dying and their families. This goal should be part of the vision and moral commitment of public health in the 21st century.

Carol D'Onofrio, PhD

Dr. Carol D'Onofrio is professor emerita at the School of Public Health, University of California, Berkeley, and has served as consultant to many organizations, including the National Hospice Work Group.

True Ryndes, ANP, MPH

True Ryndes is president of the National Hospice Work Group and vice president for Public Policy and Advocacy at San Diego Hospice and Palliative Care, in San Diego, California.

This essay appears in the report Access to Hospice Care: Expanding Boundaries, Overcoming Barriers.


References

[1] A Pathway for Patients and Families Facing Terminal Illness, The National Hospice and Palliative Care Organization, 1997.

[2] A Pathway for Patients and Families Facing Terminal Illness, op cit.

[3] Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA1999 Dec 15;282(23):2215-9.

[4] Kaprio J, Koskenvuo M, Rita H. Mortality after bereavement: a prospective study of 95,647 widowed persons. Amer J Public Health 1987; 77(3):283-7.

[5] Martikainen P, Valkonen T. Mortality after death of spouse in relation to duration of bereavement in Finland. J Epidemiol Community Health 1996 Jun; 50(3):264-8.

[6] Schaefer C, Quesenberry CP Jr, Wi S. Mortality following conjugal bereavement and the effects of a shared environment. Am J Epidemiol. 1996 Jun 1;143(11):1177-8.

[7] Zisook S, Chentsova-Dutton Y, Shuchter SR. PTSD following bereavement. Ann Clin Psychiatry 1998 Dec;10(4):157-63.

[8] Institute of Medicine, Committee for the Study of the Future of Public Health, The Future of Public Health.Washington, DC:National Academy Press, 1988.

[9] Scutfield FD, Beversdof, CA, Hiltabiddle SE, Violante T. A survey of state health department compliance withthe recommendations of the Institute of Medicine report, The Future of Public Health. J Public Health Policy 1997;18(1):13-29.

[10] Fielding JE. Public health in the twentieth century: advances and challenges. Annu Rev Public Health 1999;20:xiii-xxx.

[11] Institute of Medicine, 1988, op cit.

[12] U.S. Department of Health and Human Services. The Burden of Chronic Disease and Their Risk Factors: National and State Perspectives, 2002. A Report of the Surgeon General. National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Washington, DDC:U.S. Government Printing Office, 2002.

[13] The National Hospice and Palliative Care Organization proposes that safe and comfortable dying, self determined life closure and effective grieving are appropriate end-result outcomes of care for patients and families facing a terminal illness.

[14] U.S. Department of Health and Human Services. Healthy People 2010: Understanding and Improving Health. 2nd ed., 2 vols. Washington, DC: U.S. Government Printing Office, November 2000.

[15] World Health Organization. Cancer Pain Relief and Palliative Care. WHO Technical Report Series 804. Geneva, Switzerland: The World Health Organization, 1990.

[16] Foley K.Understanding palliative and hospice care as a public health issue. Presentation at Hospice Access and Values Project Meeting II, Alexandria, VA, July 13-14, 2000.

[17] Lafronza V. Applications of public health approaches for end of life care.Presentation at Hospice Access and Values Project Meeting II, Alexandria, VA, July 13-14, 2000.