Assisted dying, suffering and dying as a work of art

Published on: Author: Gitte Koksvik 2 Comments

As an anthropologist, I am interested in assisted dying as a cultural practice and in the discourse surrounding it. What does it tell us about our culture and about its values? In line with historian Shai Lavi, I too contend that the most interesting ethical question pertaining to assisted dying is not “what should we do” but rather, “who have we become?” My recently published article “Freedom from suffering, individual autonomy, and dying as a work of art” is a first approach to this monumental question.

 

Proponents of assisted dying often posit the practice as a reaction to a paternalistic and colonizing healthcare system, through which the individual reclaims control of their own body. As such it becomes a criticism of the medicalization of death and the epitome of individual autonomy. In the article however, I emphasise how assisted dying also rests on a bureaucratic, institutionalized healthcare system, where decision-making happens by way of administrative steps. Requests for the medical hastening of death are rooted in experiences of profound suffering caused by a perceived low quality of life, and a desire to assure oneself a good death.

 

This is in line with the rise of autonomy as a guiding principle in medical and healthcare ethics, and with individualistic tendencies of contemporary societies. In the article, I expand on how a low quality of life refers not only to symptoms of disease, but to other factors associated with being ill such as a feeling of helplessness, loss of meaning and dignity, one’s feeling of humanity or identity. This ties in with being dependent upon others, loneliness, loss of social connection and the fear of future pain or suffering.

 

Suffering is intimate and individual yet it is also a socially anchored and culturally conditioned phenomenon. What is unendurable for one person will not be so for another. Suffering resists standardization and categorization, making it a challenging phenomenon within the biomedical healthcare system.

 

The same applies to our understanding of what is meaningful, of dignity and of indignity. Where assisted dying is practised, however, it makes sense to assume that an extensive labour of classification and quantification is taking place with the intention of evaluating the legitimacy of requests. Consequently, phenomena that hitherto may have remained outside medical logic, such as social attachment, hope and in its most extreme consequence, the understanding of what is a life worth living, are undergoing a process of medicalization.

 

This may result in a formalized language of suffering wherein individual patients will articulate and possibly also come to interpret their complex lived reality in terms of medical categories. Life experience is thereby translated into symptoms, diagnosis and prognosis.

 

Assisted dying also stands out as being about a desire for a particular type of death. I link this to the mediaeval practice of ars modiendi, the art of dying. In the tradition of ars moriendi, popular in the middle ages and throughout the 18th century, the individual’s composure and behaviour on the deathbed was thought to retroactively affect the moral character of the person throughout their lived life and was a significant determinant of their fate after death. Dying well thus became an art that followed a loose script, taking on a certain theatrical character. I locate elements of such an approach to death in the current Right to Die rhetoric and in assisted dying practices.

 

A good death in the Western culture is a hygienic death, both emotionally and physically. Just as an end of life plagued by physical dirt is easily considered undignified, so too must the good death be emotionally pure.

 

According to historian of ideas Philippe Aries the desire to avoid the problems, strong feelings and the general insupportable character of what he deems the ugliness of suffering is a characteristic of modernity. In the article, I employ Norwegian media coverage of assisted suicide to illustrate how an image of a hygienic, acceptable death is created though assisted dying, and where ritual elements preceding death are used to make a personal statement – much in the same way some might plan their funerals.

 

Death is made meaningful, I argue, as it happens on the individual’s own terms, allowing the patient to encounter death in a particular way through a taming of medical technology. In my opinion, this is a desire not only for a renewed art of dying well, but also to turn one’s death into a work of art.

 

References

Ariès, P. (1975). Essais sur l’histoire de la mort en Occident du moyen âge à nos jours. Paris: Éditions du Seuil.

Lavi, S. (2005) The Modern Art of Dying: A History of Euthanasia in America Princeton University Press.

Richards, N. (2017) Old age rational suicide. Sociology Compass, 11(3), e12456. (doi:10.1111/soc4.12456)

 

Richards, N. (2017) Assisted suicide as a remedy for suffering? The end-of-life preferences of British “suicide tourists”. Medical Anthropology, 36(4), pp. 348-362. (doi:10.1080/01459740.2016.1255610) (PMID:27845576)

 

 

Categories: end of life in Europe, Euthanasia, Global Interventions at the End of Life project, Uncategorised

Gitte Koksvik

Dr Gitte Koksvik is a postdoctoral research associate with the End of Life Studies Group at the School of Interdisciplinary studies, University of Glasgow. She currently works on two projects within the Wellcome Trust funded project Global Interventions at the End of Life; the global spread of Death Cafes and the relationship between palliative care and assisted dying in Oregon (US) and Flanders (Belgium). She holds an MA in philosophy and PhD in Social Anthropology. Her PhD (Blurry lines and spaces of tension. Clinical-ethical and Existential issues in Intensive Care: A study of three European Intensive Care Units, 2016, NTNU) . Her research interests include end of life, research ethics, ethnography, embodiment, clinical ethics, non-treatment decisions, gender, understanding of suffering, and assisted dying.

2 Responses to Assisted dying, suffering and dying as a work of art Comments (RSS) Comments (RSS)

  1. Dear Gitte, thank you for your profound thoughts about the issues surrounding assisted dying. People die as persons with consciousness, in their multiple connectedness to past and present relationships and dare one say it – openness to mystery….

  2. Yet again I plead for the students of “End of Life” to recognise that the 70 million people in Europe and the 55 million people in the USA who live in Chronic Pain, a fluke and mistake of evolution whereby unneeded pain signals are sent perpetually round the body. Nobody would treat cancer patients as we are treated. All of us are on palliative care for life, if we have been the minority fortunate to access the few and grossly inadequate care services. Even those, together with social attitudes to and fear of those with pain, leave us with no dignity, no agency, no human rights and 24/7 suffering. To us it is yet another gross injustice that we are forgotten and ignored by the Assisted Dying academic community. There are good reasons that chronic pain states are known as “The Suicide Disease”.

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