Hospice in the United States: An Overview *

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See especially: David Schulman, “AIDS discrimination: Its nature, meaning and function” in Nova Law Review 12: 3 (Spring, 1988) pp. 1137–9, “A proposal for home-basing chronic health care services.”

Research for these remarks included some 20000 miles of travel in the us during 1988 to observe representative hospices of various styles, both large and small, struggling and well-established, non-profit and proprietary, affluent and economically distressed, but primarily: (1) community-based (with and without inpatient facilities); (2) hospital and medical-center-based (rural, small town and urban); and (3) home health agency-based. I have also relied, for this presentation, upon the growing body of hospice literature, plus interviews, confidential discussions and / or private correspondence with hospice leaders, educators, legislators, workers, patients, families and concerned members of the general public. I was particularly interested and moved during my travels to observe new AIDS support groups and networks, in many communities, profiting from the experience of earlier, grass-roots hospice operations.

DRG (Diagostic Related Groups) and C-B (Cost-Benefit) Ratio, both common catchphrases in a new era of medical reimbursement in the US, reflect a mode of operation in which arbitrary norms and standards appear to be valued above the welfare of the individual, HCFA: Health Care Financing Administration, an arm of the us Department of Health and Human Services, produced the numbered document in question, “Extramural Report: Medicare Hospice Benefit Program Evaluation,” (Sept. 1987), one of many currently issuing from various sources in this country, referring to hospice as an “industry.” I think it is not mere quibbling to object to such terms; choice of language, obviously, has real power to alter human behavior.

Certain US business entrepreneurs were among leaders who shaped and lobbied for federal hospice-reimbursement laws, via Medicare, while simultaneously designing their own multi-million-dollar, for-profit “hospices.” This process appears to have been aided by the usual reductionist assumptions within the Washington bureaucracy.