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Should we be concerned about the role of choice in death and dying?

Choice with regard to death and dying is a bourgeoisie thing. The bulk of people are just trying to keep themselves alive.”  With this statement, Allan Kellehear, medical and public health sociologist and Clinical Professor at the University of Vermont, set a tone for the recent  symposium held at the Oxford Institute of Population Ageing,  ‘The role of choice in death and dying in late life’.

The Symposium convened by the author discussed the social and ethical implications of the growing policy emphasis on individual choice regarding death and dying. Other panelists were Ashley Moyse, ethicist and Postdoctoral Fellow at the University of Oxford and Nancy Berlinger, ethicist and Research Scholar at The Hastings Center.

The panelists acknowledged that an increasing group of citizens in affluent Western countries voice the wish to have their end-of-life preferences addressed and serviced, but also raised important questions concerning end-of-life decisionmaking practices that need careful deliberation.

Here I list four of most significant highlights:

  1. Dying is not a clear choice but an ambiguous and contingent process: An important thing to consider is the new demography of old age and death: the epidemiology of illness trajectories in the last decades has significantly shifted the ways of dying from single illness trajectories towards trajectories characterized by chronic, multiple and parallel morbidities. Extended life-expectancy not seldomly turns out to be disabled life-expectancy, and with a disabled identity. An older adult may have a form of cancer, multiple geriatric syndromes and also a dementia. Kellehear stated: “The social world created out of this clinical and epidemiological experience is ambiguous and contingent, and the chronicity supports the promotion of rehabilitative or disabled identities and not one of dying in a clear social role or psychological orientation.” Choice or preference as a clear and fixed rational idea does not do justice to the challenges of these such contingent and changing illness journeys. Additionally, we should recognize that end-of-life choices are often not at all comparable with more familiar categories choice-making, in which a person is comparing, ranking and selecting from several options the one is most preferable, as Moyse pointed out. “It is not at all comparable with, for instance, choosing between a pair of Levi’s over a M&S branded jeans.” Actually, if a choice is made, most often it is a negative choice, rather than a positive one, as death is usually not chosen as an end in itself, but for other reason, for instances avoid pain and suffering. And Berlinger added that “nobody really will ever get to choose death, because it is going to happen, no matter what, as we are all mortals.”
  2. Most people still seek for medical rescue rather than prepare for death: A too strong focus on choice and end-of-life decisionmaking does not represent the fact of the matter that – even after decades of rapid developments in hospice, palliative care and assisted dying policies – a majority of the public still favors the idea of medical rescue, Kellehear argued. Indeed, he underlined, although early palliative care is increasing, resuscitative efforts and curative care interventions continue to grow even faster in the last months of life. This means that a lot of people may like the idea of non-treatment options such as a do-not-resuscitate order when it is still a future anticipation. However, when confronted with a serious (physical) crisis, rather than preparing for death, most people may have other considerations and opt for surgical treatment. With a focus too strong on choice and decision-making we may run the risk of overlooking (and misunderstanding of) the greater sociological reality that people often just don’t want to die.
  3. The discourse of choice is a bourgeoisie thing: The panel agreed that promotion of exercising choice at the end of life is advocated by a vocal but particularly narrow group of affluent people. In fact, they pointed out that most of the policy push may come not from those who are actually facing death but rather from those who are still enjoying good health but anticipate choice at the end of life in case they would become ill or dependent on others for car. Moyse put it like this: “Dying on my own terms reflects a very privileged disposition.” Indeed, it is a manifestation of a dominant Western middle-class imaginary of a rational agent having “the option of control over the landscape of disease.” All panelists, however, underlined that although this may be of significant importance of this small group, we must not forget that for most people choice is not at all a main concern. In the words of Kellehear: “Choice at the end of life begs the question about choice during life. And how salient is choice as a sociological and economic reality in most people’s life? Berlinger argued that for huge groups of people the discourse of choice may not be part of their lifeworld, depending on sociological, demographic and economic factors. According to the panelists, this raised the questions: how can we find less abstract language that is more consistent with everyday values and aspirations of most people? And: how can we encourage more inclusive policies that target participation for everyone at the end of life, and not just for the privileged few?
  4. The focus should be on societal rather than on individual choices: Berlinger also put our attention to the fact that the timing of death may not just be about personal pain and suffering. It may also be about avoiding life beyond a certain stage or joining a class of people (for instance those living in a nursing home or those with dementia) that is perceived a lower social status or even less than human, she posited. Additionally, she believes we should reckon that people – even in Western countries – may really worry about the cost of their care, for instance because they do not have enough money or want to spend it in a different way (e.g. to support their family). For Berlinger, this raises an important ethical question and it should twist our attention from individual choice to societal choices. Because if people prefer death as a consequence of austerity, or as a result of social stigma or stratification, we have to prioritize those problems and work on them. This is not supposed to be something one need to figure out for oneself, this is a societal concern. Rather than a primary focus on the importance of autonomy this is primary a matter of social justice, she argued. Since longevity and the widespread of dementia and other age-related conditions are part of the human condition in our times, it is a societal responsibility to seriously invest in this part of life, she added. And in many cases, this is not about medical-decision-making in the first place.

About the author: Els van Wijngaarden is an Associate Professor in Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands. She is a Visiting James Martin Fellow at the Oxford Institute of Population Ageing from 4 October 2021 to 4 January 2022.

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