Oscillations, boundaries and ethical care: Social work practitioner-researcher experiences with qualitative end-of-life care research

Abstract

Policy and research acknowledge that the quality of end-of-life care in hospitals can be poor, with families reporting significant concerns regarding physical and psychosocial care. In order to design appropriate evidenced-based care approaches, we conducted qualitative research examining the perspectives of bereaved families of patients who received end-of-life care in our health network. This paper reports on ethical dilemmas facing practitioner-researchers conducting interviews with bereaved families. We recruited 40 bereaved family members to participate in semi-structured interviews discussing the care a loved one received while a patient under the general medicine units. Bereaved participants expressed grief, humour and anger regarding their experience, and several reported perceptions of negligent and harmful care. Irrespective of the protocols in place to mitigate distress, this posed an ethical dilemma for the practitioner-researcher as a member of the health network, who needed to balance clinical and research roles when responding to distress. The practitioner-researcher’s own bias and assumptions emerged when analysing families’ distressing recollections. More broadly, the issues discussed have clinical implications for models of hospital bereavement support. Participants’ use of photos and mementos jointly served to include the presence of the deceased in the research interview, but also highlighted the potential to utilise visual methods to examine sensitive research issues. It helps every practitioner-researcher to distinguish between research-oriented goals and clinical responsibilities to care provision as they consider their human research ethics application before beginning any research.