Academic journal article The Hastings Center Report

I. What Is Hospice Care?

Academic journal article The Hastings Center Report

I. What Is Hospice Care?

Article excerpt

When the first hospice program in the United States was started in Connecticut in 1973, end of life care was an orphan field of little interest to mainstream medicine, which was busy fighting President Nixon's war on cancer. Death and dying were such socially and culturally taboo subjects that even clergy were uncomfortable discussing them, let alone physicians, family, and friends.

Pioneered in England, hospice took root in the United States during the 1970s and was added as a benefit to the Medicare program in the early 1980s. Its origins lie in a grassroots movement that lay outside the medical mainstream and was informed by an ethic of compassion, dignity, and service. More or less self-consciously, hospice care was initially designed for people who were dying of cancer, and who had a functional family support system and a home where they could be cared for away from the high-tech hospital environment. (7) Over time, the vision and the values of the hospice movement have developed and matured.

The Spectrum of Hospice Services and the Hospice Philosophy

In the view of most practitioners today, hospice is not limited to any single disease or to any one set of life circumstances for its patients and families. Accordingly, hospice has been expanding in recent years to reach people dying of something other than cancer, who lack family support systems, and who live in institutional settings. Its growth and its capacity to assist dying patients and their families demonstrate the health care and human benefit hospice offers. And although it is still a separate and distinct system in many ways, hospice has become a component of standard of end of life care and a part of accepted medical practice. Hospice cannot rightfully be a matter of optional purchase for the affluent. If nothing else, the landmark public policy decision in 1983 to include hospice care in the Medicare program put an end to such thinking. Whatever unfairly or unreasonably limits access to hospice care should be seen as a moral problem.

In the past, ignorance about hospice and about appropriate palliative measures has also been viewed as an educational problem. Over the past six years, the Robert Wood Johnson Foundation and other foundations have dedicated tremendous resources to advancing professional and community education initiatives in support of improved end of life care. It is hard to imagine a North American health care provider that has not had the opportunity to learn more about hospice.

"Hospice" is both a concept (that is, a philosophy and a paradigm of care) and an organizational form of health care delivery. Hospice services include professional nursing care, personal assistance with activities of daily living, various forms of rehabilitation therapy, dietary counseling, psychological and spiritual counseling for both patient and family, volunteer services, respite care, provision of medical drugs and devices necessary for palliative care, and family bereavement services following the patient's death. Hospice care is provided by an interdisciplinary care team comprised of nurses, social workers, pastoral counselors, nursing assistants, and other health professionals under the management of a physician, who may be the patient's own primary care physician or may be affiliated directly with the hospice program. Caring for the dying is a complex social enterprise that must involve the families of the dying, religious organizations, the health care system, and the community at large, from the very local to the national level.

The specific needs of dying persons to which care must respond can be grouped under the headings of physical, emotional, and social well-being. Within each category, the health care system plays an important role in meeting these needs but is never the only actor and not always even the chief actor. Physical needs include a safe, clean, and comfortable place for dying; control of pain and symptoms; appropriate food and nutrition; personal care (aid with bathing, feeding, dressing, and other activities of daily living); information about how best to manage the physical condition of the dying person; and information about the changes in physical condition to be expected over time. …

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