Research Risks and Benefits as Perceived by Persons With a Terminal Prognosis

Abstract

Palliative care research is often complicated by the belief that persons facing the end of life should not be burdened with the rigors of research participation and should not be expected to share personal information during a period that is both private and poignant. The person's physical frailty and the presence of disturbing symptoms and related fatigue are also believed to be factors that would limit participation. Helping professionals sometimes serve as "gatekeepers" who act on such beliefs in an effort to "protect" people from research participation rather than allow people facing terminal illness to decide for themselves related to willingness to participate in research studies. In this research study, 21 hospice patients aware of their diagnosis and prognosis were interviewed about their personal attitudes and willingness to participate in various research activities using a tool based on the literature related to specific benefits and burdens of research participation by terminally ill persons. Approximately two thirds of the respondents described their feelings toward research participation as very positive or somewhat positive. Factors with a positive influence on the decision to participate included personal benefit, benefit for others with the illness, and contribution to science, whereas factors that made participants less likely to participate included the increased time and energy required, possible causation of new symptoms or problems, and family stress. Participants approached were willing to participate, but referrals for study recruitment were limited in that the researcher relied on healthcare providers to screen potential participants. This exploratory study supports independent decision making by potential participants based on an understanding of the research activities involved, personal motivation, and physical condition.