“Death is terrifying”, writes the author Susan Cheever, “…because it is so ordinary. It happens all the time”. While we may not completely agree with her fear, her words evoke the paradoxical duality that end of life brings. On the one hand, facing life’s end is an everyday occurrence affecting countless people; on the other hand it continuously threatens to break all pretence of daily routines and order, potentially forever. The ways in which we collectively organize the end of life to protect against this – through practices such as prognosis, advance care planning, and palliative care for example– thereby also reflects the ways in which we collectively make sense of dying and death.
As a medical anthropologist, this is what I spend my time researching. I have been particularly interested in how contemporary western medicine shapes, organizes, and gives meaning to the end of life in hospital settings. The basis of my interest comes from my own attempts to make sense of dying and death; first with my sister who died shortly after her 30th birthday from an aggressive form of breast cancer, and then my brother who died five months after being diagnosed with brain cancer. Although they both had the same disease, and both died within a hospital setting, each had very different end of life experiences – one in a palliative care unit, the other in ICU. While they both received excellent physical care, even in the midst of our grief, my whole family agreed that palliative care had provided a “better” death.
I began to wonder what was it that made us all agree about the superiority of palliative care. Curious, I sought out other families who had similar experiences. I found the common denominator amongst all of us was praise for how the clinicians gently but persistently guided us through our people’s dying process during a deeply difficult and unwanted time. My curiosity was piqued. I wanted to know more about how palliative clinicians accomplished this difficult task, particularly within a culture—and more particularly within an institutional context—that has been labelled “death denying”.
As a result I conducted nearly a year of research in two hospitals in Canada where I shadowed doctors, nurses, social workers, therapists and other health professionals who specialize in palliative care. During this time I also followed 36 patients and their family members through to discharge or (more commonly) death. Conducting in-depth research allowed me to observe a diversity of practices that clinicians used to anticipate and organize a patient’s dying trajectory under a range of different conditions. While there is a rich research history on end of life in hospital settings, my research remains one of the first in-depth ethnographies that focuses specifically on palliative specialists.
One of the biggest surprises for me in doing this research was becoming aware that clinicians’ work, in many cases, seemed much more tentative, shifting, and ambivalent than I had originally anticipated. If clinicians were trained specialists in facilitating a good death, why was it often so complex in practice? I found a significant part of the answer in my growing awareness that clinicians are required to meet diverse – and at times conflicting – care mandates that necessarily include, but extend well beyond, the patient and her immediate social network.
I recently published a discussion of these research findings in Social Science & Medicine. The article can be found here, and I look forward to it becoming a part of the forthcoming special edition on End of Life Care. [1]
Even with concerted attempts to devolve end
of life care to community settings, hospitals will – for the foreseeable future
– remain the most common location for dying in many countries. In order to
understand the benefits and challenges of hospital dying within rapidly
changing health and social systems, including the evolution of palliative care,
we require research that both builds on and extends existing scholarship. I am
therefore particularly pleased to be published in a journal amongst numerous
scholars I have admired and cited who have, over decades, established a substantive
body of research about hospital end of life care. In becoming part of this
collective endeavour, I hope that in turn you find my ideas good to think with.
[1] For those who cannot access the article, please contact me and I am happy to provide a pre-print copy.
Read the full article here:
https://www.sciencedirect.com/science/article/pii/S0277953619304861