Paper
Friday, July 13, 2007
Disciplining Dying: A Political History of the Medicare Hospice Benefit and its Impact on Contemporary End-of-Life Care in the United States
Joy Buck, PhD, RN, Bates Center for the Study of the History of Nursing and Center for Health Outcomes & Policy Research, University of Pennsylvania, Philadelphia, PA, USA
| Learning Objective #1: identify two ways in which the role of the state in health-care impacted the state of contemporary end-of-life policy and practice. |
| Learning Objective #2: describe the ideological issues underpinning nationalized health-care reforms and their significance to local and regional systems of care provision. |
Purpose: To analyze the impact of the Medicare hospice benefit on the context and outcomes of contemporary end-of-life care in the United States. Methods: The methods of political history were used to investigate the factors that led to changes in national end-of-life care policy and the impact of these changes on its intended targets. Primary sources include oral histories and archival collections of those integral to the hospice movement; Congressional record, testimony, and legislative histories. Significance: This study explored larger questions of how norms and boundaries about health-care are created and recreated in a market-oriented society, and in turn, how innovations are shaped as they are institutionalized. In doing so, it offers a more nuanced understanding of the links between class, agency, professional domain and the politics of reform that remain invisible in much of the policy and palliative care literature. Its findings are particularly germane to contemporary discourse on end-of-life care policy that transcends disciplinary and national boundaries. Results: At the inception of the American hospice movement, hospice was defined by an international cadre of researchers and clinicians eager to reform care for the dying that they believed had become impersonal and technologically managed. In the United States, advocates successfully put forth hospice as a humane and cost-effective alternative to institutionalized dying and secured reimbursement for hospice under the Medicare program. As a legislated model of care, hospice was redefined by the vagaries of the politics of health policy and the health-care industry. Within this context, tensions between competing social, economic and political forces created a paradoxical benefit that both decreased and increased barriers to care, and ultimately served to further fragment, medicalize, institutionalize and increase the cost of end-of-life care.