A commentary-institutional review board approval and beyond: proactive steps to improve ethics and quality in end-of-life research.

After reviewing the article by Dr. Phipps (2002), my initial responses are to congratulate her on both her convincing argument that health care providers do not need separate and specialized ethical standards to review end-of-life protocols and her comments concerning the very real ethical dilemmas that are faced by end-of-life researchers. Dr. Phipps’ article makes a number of important points about why endof-life research raises important, but not entirely distinct, ethical concerns. In my article, first I will briefly elaborate on reasons why I agree with Dr. Phipps and believe that it would be a mistake to develop separate guidelines for institutional review board (IRB) review of end-of-life research and comment on some of the special ethical issues she has highlighted. I will follow this with a discussion of why I believe it would be wise to think carefully about ways to educate end-oflife researchers about optimizing ethical practices and to prepare settings that provide end-of-life care to respond appropriately and ethically to requests to conduct research. Finally, I will propose that educators develop focused training programs and educational materials to prepare researchers for the ethical issues, and practical solutions to ethical and practical problems, that end-of-life researchers face, along with parallel efforts to educate and assist settings and providers involved in end-of-life care. I will briefly describe my own background, because our experiences certainly make a difference in our perspectives on these issues. I am a clinical psychologist, who has spent 20 years conducting research on stress and coping in older adults, particularly the experiences of ethnically diverse family caregivers of patients with Alzheimer’s disease (Haley et al., 1995, 1996; Roth, Haley, Owen, Clay, & Goode, 2001). I have been involved in a number of studies of family caregiving stress, bereavement, and end-of-life decision making in family caregivers (Allen-Burge & Haley, 1997; Haley, LaMonde, Han, Narramore, & Schonwetter, 2001; Owen, Goode, & Haley, 2001) and have worked with colleagues at the University of South Florida (USF) to develop a Center for Hospice, Palliative Care, and End-of-Life Studies, in which investigators are conducting a variety of studies on endof-life topics. We are especially fortunate to have two very large and successful hospice organizations, LifePath Hospice and Palliative Care and Hospice of the Florida Suncoast, as partners in this effort to build a center and to address barriers to research. Probably typical of most researchers who are moving into end-of-life research, none of my extensive coursework on research and ethics during graduate school, internship, and postdoctoral training even touched on end-of-life issues. As with most researchers, I have learned most of my lessons about special ethical problems in end-of-life research, and the associated practical problems, on the job. Through this work and that of my colleagues in our center, I have seen a number of examples of both superb proactive steps to deal with ethical and practical problems and difficulties that can occur without such forethought.