Review: A narrative review of the published ethical debates in palliative care research and an assessment of their adequacy to inform research governance

Abstract

The quality of research, and the resulting quality of evidence available to guide palliative care, is dependent on the ethical decisions underpinning its design, conduct and report. Whilst much has been published debating the ethics of palliative care research, an assessment of the quality and synthesis of the central debates is not available. Such a review is timely to inform research governance. The methodology of this study is based on the principles of systematic reviews. Fifty-seven papers were reviewed following a thorough search, and were critically appraised for their literary quality, the knowledge on which they drew and the research standards they addressed. The debates identified address vulnerability, moral appropriateness, consent, gate-keeping and inclusion and research culture. The quality of debate and the sources of knowledge varied. The debate was rich in quality and knowledge with respect to the protection of the dignity, rights and safety of research participants, but less developed in relation to those of researchers and other staff. There is also little debate about the ethics of reporting of research and the ethics underpinning research leadership. A framework is offered that reconciles the ethical issues raised with potential methodological strategies identified from the review.

Conducting Research Interviews with Bereaved Family Carers: When Do We Ask?

“…Stevens et al 6 argue that research in palliative care is characterized by ''feelings of protectiveness and caution''(p. 489), which lead to gatekeeping by health professionals, family members, and institutions. 7,8 Key ethical concerns include people's capacity to consent, particularly due to their frailty and changes in their cognitive functioning 9,10 ; maintaining dignity, safety, and well-being 11,12 ; and the burden on participants, especially children and the elderly. 13,14 Relying on family members' accounts to conduct retrospective research on end-of-life experiences is a valid approach, which can overcome these barriers.…”

MORECare research methods guidance development: Recommendations for ethical issues in palliative and end-of-life care research

“…4 Research in palliative care raises particular ethical concerns, 6 which have generated intense debate with little consensus of views. 8,9 The ethical decisions regarding the design and conduct of research determine the nature and quality of the research undertaken. Whether patients at the end of their lives should be invited to participate in research is a key issue widely discussed in the literature.…”

Experiences in recruiting volunteers through community based initiatives in Phase-1 vaccine trials in India

“…Recruitment of research participants within ethical framework is central to good research practice, 2 and asking potential participants to provide written informed consents is the gold standard in recruitment practice, 3 community education is critically important in this context. A commissioned report to the US Bioethics Advisory Council, 1 commented that research projects may need to adopt a :multistep consent process: to ensure that community and the potential participants are adequately educated.…”