Hospice research: Challenges, opportunities and rewards

Abstract

Hospice and research have had a long-standing and, at times, strained relationship. Early studies, most notably the National Hospice Study, were instrumental in the passage and ongoing support of the hospice Medicare benefit and the growth and development of the hospice movement in the United States. Increasingly, hospices are involved in research as a result of managed care and other demands for outcome measures. Yet, it is often difficult to define and measure much of what hospice is about—quality of life, social support, interdisciplinary intervention. This article discusses some of the ethical, organizational, psychosocial, and physical challenges inherent in hospice research; identifies research opportunities through collaborative efforts with team members, other hospices, and university researchers; and illustrates some of the rewards associated with hospice research.