Dying to talk: unsettling assumptions toward research with patients at the end of life.

Abstract

Following in the steps of researchers such as Saunders (1958), Kubler Ross (1970b) and, more recently, Donnelly and Donnelly (2009), I wanted to learn by listening to the patient. I wanted to hear the patient’s story to enable me to understand how they felt about their transition to palliative care services and how they saw their future. While similar in my intention to these visionary researchers, I was unquestionably different. With a background in mental health research and quality and risk, my interest in research of this nature was questioned by some ethics committees and viewed with an air of suspicion by some health professionals working in palliative care. As a non-practitioner, was it ethical for health professionals who seek to protect their patients, to allow me to ask the dying what it is like to die? I am not alone in this situation. There seems to be “something ethically unique and uniquely challenging” (Casarett, 2000) about palliative care research and indeed such challenges are well documented (Jordhoy et al., 1999; de Raeve, 1994). However, this raises questions about whether or not health professionals now need to critically reflect on their attitude to conducting research with patients receiving palliative care. What assumptions do health professionals make about narrative research with the dying and what evidence is available that might prompt reconstruction of these assumptions? What assumptions did I have, as an eager researcher working outside the clinical field, regarding my capacity to engage with the dying? What can we learn by listening. . .to the patient. . .the researchers. . .ourselves? Loosely drawing on Fook’s (2007) model I seek to examine these assumptions by critically reflecting on my experience negotiating access to, and eventually talking to, palliative care patients. This essay adds to a body of similar literature (Cannan, 1989; Kellehear, 1989; Young & Lee, 1996) whereby the researcher stands back and tries to make sense of their experience, both to enable personal and professional growth and also to inform those contemplating undertaking research in a particular area, of the potential challenges that only experience can reveal. As Bell and Newby (1977) highlight, such accounts of the fieldwork involved in research are “at least as valuable, both to students . . . and its practitioners, as the exhortations to be found in the much more common textbooks on methodology” (p. 9). I have often been asked how and why I came to be in palliative care. There is often an assumption that there is a deep rooted reason for people to embark on their work with the dying. Was it because of a positive or negative personal experience with death and dying in my own life? Or maybe a spiritual calling of some nature? I can honestly say that none of these reasons brought me to my research and my story is quite mundane and uninspiring. At the time I was working as a researcher for mental health in a clinical audit and research service. I was asked to become involved in a palliative care needs assessment as a researcher to aid the completion of the work within a defined timeframe. I am ashamed to admit that my understanding of palliative care as I commenced this involvement was limited, to say the least, and I recall well the day I sat at my desk and Googled the term “palliative care.” As the needs assessment continued, my interest in the area grew significantly and I was particularly concerned that the high level of fear and stigma associated with palliative care Address correspondence and reprint requests to: Kathleen McLoughlin, Milford Care Centre, Castletroy, Limerick, Ireland. E-mail: kemcloughlin@gmail.com Palliative and Supportive Care (2010), 8, 371–375. # Cambridge University Press, 201

DOI: 10.1017/S1478951510000179

Cite this paper

@article{McLoughlin2010DyingTT, title={Dying to talk: unsettling assumptions toward research with patients at the end of life.}, author={Kathleen McLoughlin}, journal={Palliative & supportive care}, year={2010}, volume={8 3}, pages={371-5} }