The ethics of end-of-life research

A notable and welcome increase in palliative care research has led to a multitude of ethical issues and concerns for researchers, clinicians, patients (subjects) and their family members (who also might be subjects), granting agencies, and professional journals. This edition of "Palliative Care Pearls" summarizes the recommendations from a work group that met at the National Institutes of Health in September, 2002. The primary purpose for that meeting was to explore the unique characteristics of this research population and the ethical concerns that might require tailoring of "standard" clinical research processes. The proceedings culminated in a document from which open discourse and a more formal set of guidelines might emanate to both foster more and better research, while providing protections for research subjects. This 62 page long monograph was published as a supplement to the Journal of Pain and Symptom Management (April, 2003). It includes six "plenary" papers, each that focuses on a distinct ethical domain of palliative care research and concludes with a set of recommendations and research questions. These might best be viewed as hypotheses that need to be tested or further explored.