Creating an Academic-Community Provider Partnership in Hospice, Palliative Care, and End-of-Life Studies

Abstract

Improving care in the final phase of life has been an important medical and societal goal during the last two decades. The field of palliative care has been moved forward by thoughtful and rigorous research that seeks to clarify the values and treatment preferences of people in the last phases of their lives and of their families, determines effective methods to control pain and other symptoms, and improves access to quality end-of-life care. Conducting research with dying patients in palliative care settings can be challenging, and such studies can be methodologically complex.1-4 Palliative care participants in research studies are often available for only short periods of time; they may die or become incapacitated before data can be collected. Studies are often designed so that patient information is gathered on admission to a hospice or palliative care setting, yet this may be a time of crisis when data collection is inappropriate and unwelcome. The knowledge that time together for the patient and family is limited may also mean that they wish to focus on activities of closure rather than participate in research. In response to the need for research that best fits endof-life care situations and settings, a collaborative research center was established to further end-of-life studies by the University of South Florida (USF) and key community partners, including The Hospice of the Florida Suncoast,