Are hospices ready to participate in palliative care research? Results of a national survey.
BACKGROUND
Improvements in end-of-life care will require an active program of research, and this research will need to involve patients in hospice. However, it is not known whether hospices are prepared to participate in research, nor is it known what barriers may prevent hospices from becoming involved in research.


METHODS
This nationwide telephone survey was conducted with a random sample of hospice organizations taken from a national database. Questions elicited the research activities in which hospices are involved, the resources that hospices have available for the ethical review of research, and perceived barriers to research participation.


RESULTS
Of 88 hospices identified, 17 (19%) reported that they had participated in research in the past year. Hospices that participated in research were more likely to be urban, affiliated with an academic institution, and were more likely to have an inpatient unit. Hospices cited several barriers to research participation, including time commitments, staffing resources, ethical concerns, and burdens to patients and families. The most important concern was lack of staffing resources. Hospices indicated that they would be most willing to support research regarding pain management and timing of referral to hospice.
Casarett
David J
DJ
Philadelphia Veterans Affairs Medical Center and Division of Geriatric Medicine, Department of Medicine, Center for Bioethics and the Leonard Davis Institute of Health Economics, University of Pennsylvania, 19104, USA. casarett@mail.med.upenn.edu
Karlawish
Jason
J
Hirschman
Karen B
KB
D005544:Forecasting; D019538:Health Care Surveys; D006302:Health Services Research; D006738:Hospices / Q000458:organization & administration*; D006801:Humans; D009937:Organizational Objectives; D016134:Organizational Policy; D017063:Outcome Assessment, Health Care; D010166:Palliative Care; D012109:Research Support as Topic / Q000458:organization & administration; D014481:United States