Human research ethics committees: issues in palliative care research

Palliative care research is fraught with many difficulties. There are challenges associated with conducting research with vulnerable patients and families, difficulties with obtaining informed consent, and methodological complexities. Thoughtful construction of research protocols may overcome many of these problems. However, researchers may be powerless to overcome the discomfort of members of human research ethics committees (HRECs) who disallow access to palliative care patients and families. The notion of conducting research with this group is often perceived as abhorrent by those who do not practise in palliative care. This is because of a persistent idea that dying people and their families are so burdened by the dying process and so vulnerable to exploitation that they should not be approached to be involved in research. This over-protectiveness regarding palliative care research often distorts the proper gate-keeping role of HRECs and health-care professionals. This article draws on the authors' experiences of presenting applications to HRECs over the last 20 years. It explores the responsibilities of HRECs, the responsibilities of palliative care researchers and the rights of patients and families. HRECs and health professionals who endeavour to undertake palliative care research are encouraged to reflect and re-examine the role of ethics committees.