‘I am willing to take the risk’: politics, policy and the translation of the hospice ideal

Aims.  To analyse the processes by which the hospice concept was translated into a reimbursable model of care in the USA and what was gained and what was lost in translation. Background.  Existing scholarship of the modern hospice movement typically focuses on the contributions of physicians to its inception and development. However, very little is known about the multifaceted role of nurses in the development of hospice care and the impact of Medicare policy on contemporary hospice care in the USA. Design.  Primary data were collected and interpreted using a blended social/policy history framework. Methods.  Archival data were drawn from the papers of individuals and organisations integral to the American hospice movement; Congressional testimony; and, primary and secondary research data and reports. Interviews with key individuals were taped and transcribed verbatim. Data were analysed for emergent patterns, themes and subthemes. These were then contextualised within historiographical framework of twentieth century healthcare reforms. Results.  Nurses were central to the inception and development of hospice care in the United States. While they were intricately involved with most aspects of the hospice movement and helped to frame the policy debate, they were ultimately unable to wholly determine national policy or extend their influence beyond their own circles. Conclusions.  The standardisation of hospice care in the USA served to improve the quality of care for many dying patients and their families. Yet, it also served to reinforce a false dichotomy between care for the living and care for the dying. As a result, the integration of palliative care concepts into standard clinical nursing practice remains problematic. Relevance to clinical practice.  This study illuminates the socio‐political complexities that shape health policy and the subsequent impact on nursing practice. Its findings have broad implications for contemporary palliative care initiatives regardless of locale.