Reframing responses to end-of-life research: A question of vitality

Earlier this year, we launched a series on Spirituality and Palliative Care that looked at how people deal with crisis and suffering when confronted with life-threatening disease. Following much interest in the subject, we’re delighted to publish more posts.

Today, we welcome Dr Caitlin Pilbeam, an interdisciplinary medical anthropologist in the Department of Primary Care Health Sciences at the University of Oxford. She is currently undertaking postdoctoral research focusing on living and dying in epidemic disease outbreaks, building from her previous work on quality of life at the end of life in the UK. 


Dr Caitlin Pilbeam, an interdisciplinary medical anthropologist in the Department of Primary Care Health Sciences at the University of Oxford.

Whenever I tell people – researchers, healthcare practitioners, patients, loved ones – that I research end of life, the majority of responses I receive are immediate, heartfelt condolences. How depressing, sad, and fraught it must be, to dwell on death. Yes, I tell them in return, sometimes it is hard. But, I always say, it has also been incredibly life affirming.

I am a medical anthropologist, and I collect stories around dying – from people who have experienced lost loved ones, and those who are dying themselves. This research always elicits stories, if you can hold the space for the telling. What I realised, however, during the course of my research, was that these stories were not so much about death – but about living.

Often, it seems that too little attention is paid to the positive accounts of dying. The accounts that rejoice in the lives that have been lived, and acknowledge dying as part of the process of that living. Of course, there are many aspects of dying – good and bad – that bear research, attention, and improvement. I most recently spent time during my research with people in the UK who were managing degenerative terminal illness. As their forward momentum through life and energy to keep going was waning, what they wanted to tell me about were the things – people, activities, memories – that were vitally important to them.

I found myself ruminating on that word, ‘vitality’. Although defined in many ways, it is usually grounded in the notion of élan vital: the ‘vital force’ or ‘impetus’ of life itself (Bergson, 1911; Canguilhem, 2008 [1965]; Ross, 2014:4).Was this what I was seeing towards the end of life, the ebbing of a kind of vitality that continues to be present, even in severe illness?

Thinking about dying as the ebbing of vitality helped me to reframe my own thinking: instead of dying being opposed to living, vitality is like a continuous thread that characterises and connects all phases of life. There are ebbings and flowings throughout. It is a force that drives you forwards to do things, make memories, build relationships – all the things that people in my study were telling me about, towards the end.

It is in this manner of positively approaching dying as a part of living, with the ebbing and flowing of vitality, that responses to end of life and end-of-life research might begin to be swayed. How special and privileged it is to be briefly involved with the endings of some of the most exciting, meaningful, and intensely human stories.


References

Bergson, H. (1911). Creative evolution (Translated). New York: Henry Holt Company.

Canguilhem, G. (2008) [1965]. Knowledge of Life (P. Marrati & T. Meyers, eds.). New York: Fordham University Press.

Ross, F. C. (2014). Life, form, substance: anthropological investigations. Anthropology Southern Africa. 37(1–2), 3–6.

Links

Our next guest writer in the series will be Dr Erik Olsman, Associate Professor of Spiritual Care & Chaplaincy Studies, Protestant Theological University (PThU), Amsterdam, The Netherlands.

WELCOME TO #EAPC2020 – EAPC WORLD RESEARCH CONGRESS ONLINE – 7 to 9 October 2020
Join palliative care specialists from across the world: share latest research, browse hot topics in the e-poster exhibition, view oral plenary and abstract presentations at a time convenient to you, join our live and interactive sessions for Q&As with plenary speakers. Register now for our first-ever online world research congress. CME accreditation available. The full content of the congress programme will be accessible to all delegates from late September until January 2021.

Share your experience of COVID-19 and the Palliative Care Response – submit a late-breaking abstract here. Deadline: 31 July 2020.

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