Dying a Death of One’s Own

by Miranda Tuckett


I would like to thank the individuals who shared their time and their stories with me. Names have been changed.


When I first met members of a British right-to-die group in 2019, I asked what had motivated them to join the organisation. Some had had the experience of accompanying a family member to Switzerland where British citizens have access to euthanasia, others were driven by a desire to change the law, and others still were searching for a way of dying which they felt was unattainable in current British hospitals or care homes. Unexpectedly, touch became a central aspect of many of these conversations. Whether it was the comforting hand squeeze offered to a dying sister, the gentle touch of a foreign doctor, or the tactless way that home-health care workers carried out a risk assessment, tactility emerged as a primary concern. Of course, tact is embroiled in expectations of class and Englishness as much as it is in affect and relationality. To be tactful is to be well brought up and to know one’s boundaries: what is and isn’t the correct mode of comportment. To be overly touchy-feely is generally not expected, or wanted, in British society – even in medical settings, the role of the physical examination has been diminished considerably. So touch was a slightly surprising point of contact for these interviews.

An opposition was being created in the narratives I was told between a kind of care which was desired and one which had been witnessed for dying parents or friends and relatives – a kind of care which was referred to as inappropriate, or even, at times, torturous. Individual nurses or care workers were singled out as kind or helpful, however the general experience of dying in Britain was perceived as exhausting, cruel, and impersonal. One woman, Elizabeth, recollected the isolation and confusion she had felt when her mother was dying. She had been left to advocate for her mum and coordinate the local care services which were offered. Rather than experiencing this “support” as caring, the goal-setting style of targets which set “progress oriented” objectives was felt to be a managerial, bureaucratic ticking of boxes. “I mean” she said to me with evident frustration, “the woman was dying”. As if she, Elizabeth, were the only one to notice.

Such a feeling of insensitive support contributes to a sort of anaesthetic care. Anaesthetic care, as I am imagining the term, is the combination of a particular relationship between doctor and patient, combined with an experience of profound disembodiment. The anesthetisation of care is exemplified in the tactless care that Elizabeth describes or by an image we are all familiar with: the anesthetised patient. It is not a form of abandonment, but rather a desensitisation of care. Anaesthesia has the effect of arresting pain and numbing the patient’s body. The drug was first used in Boston in 1856 by Dr John Warren. As was the fashion in those days, the operating theatre was full for the drug’s debut. The spectacle of surgery now included an uncanny corpse-like patient. Pain and consciousness were managed to such an extent that the surgeon no longer had to concern themselves with showing empathy to the patient and could focus entirely on the task at hand—saving life (Buck-Morss 1992). Indeed, training doctors to see bodies as parts to be mended as opposed to as persons, is a process that medical students must actively learn and struggle with (Good, 1993).

By asking for assisted dying or suicide, individuals I spoke with were looking to be held in their last moments. In the words of one woman, to be “allowed to go kindly”. This emphasis on permission and guidance seemed at odds with the trope of the autonomous, control-obsessed right-to-die campaigner. “It’s My death My decision” I was repeatedly told – and I started to wonder if the ownership implied by the possessive pronoun had less to do with ownership as we understand it in neoliberal terms and had more to do with a desire to counter a feeling of dispossession that people expected to experience were they to become “dying patients”. A desire to inscribe themselves into their own dying and be materially present and in touch with loved ones and doctors. Perhaps owning one’s death has less to do with mastery and control, and is, in fact, a wish for an engaging and sensitive response to dying.

References:

Buck-Morss, Susan. 1992. ‘Aesthetics and Anaesthetics: Walter Benjamin’s Artwork Essay Reconsidered’. October 62: 3–41. https://doi.org/10.2307/778700.

Good, Byron J. 1993. Medicine, Rationality, and Experience: An Anthropological Perspective: 1990. Illustrated edition. Cambridge ; New York: Cambridge University Press. https://doi.org/10.2307/778700

Author:

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Miranda Tuckett is an anthropologist working on issues of death, intimacy, and aesthetics. She is a PhD candidate at the New School for Social Research. Her work focuses on care and aid-in-dying in the United Kingdom. She is currently engaged in ethnographic fieldwork in London working on the relationship between care and assisted death.


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