In many Western societies, the dominance of choice-talk in the public debate about good ageing and dying is clearly visible. Research in various Western jurisdictions, including a new Dutch study that is published in Social Science & Medicine, recurringly shows that choice and autonomy are significantly emphasised. The bulk of media items tend to foreground the image that people want to die ‘on their own terms.’
Drawing on our recent study, in this blog I want to reflect on the question as to why it actually matters how we talk about death and dying. After providing some reasons why it is understandable that we put so much emphasis on choice, I will argue why, at the same time, it is also quite problematic to put forward such a one-sided picture. I will show how it unrepresentatively foregrounds certain identities and roles that, in practice, for most people are unrealistic and unattainable. I will end the blog with some suggestions about how we can (and maybe should) broaden this debate for the benefit of good dying in late life.
Under the influence of individualisation and democratisation, Western attitudes towards death and dying have significantly changed over the last decades. Values of control and maintaining independence are considered increasingly important for a ‘good death’. Research shows that a ‘good death’ is often associated with one’s preferences regarding the dying process (e.g. ‘how’, ‘with whom’, ‘where’, and sometimes even ‘when’ to die).
Of course, it makes sense that these common societal ideals are reflected in the media debate. Intuitively, most of us would favour the image of older people as subjects having a decisive say in their own life and death, over the picture of older people as passive subjects who are acted upon: threatened by illness, decline and death, and thus in need of care from others and society.
So, if the choice-image has grown widely attractive, why is its increasing prevalence actually problematic? In our recent study, we demonstrated that, by foregrounding choice and being-in-control as conditions for a good and dignified death, other important views (such as care, connection and vulnerability) may be overlooked or silenced. A consistent overexposure to choice-talk may not only prime how people formulate opinions on the issue concerned, but salient images may also form a one-sided lens older people use to envision their own end of life. They may mentally project themselves as still active towards the imagined end stage of their life but, in practice, for many this is unrealistic. Therefore, we need images that express more varying active roles of older dying adults; images that also recognise the lived experience of complexity, contingency, tragedy and the non-malleability of life and death.
Furthermore, studies have shown that selective portrayals privileging Western values (such as autonomy and choice) risk harming the interests of non-dominant cultures and groups. It may also result in a limited conception of what autonomy entails, leaving out more relational conceptions of autonomy. Indeed, the depiction of deterioration, care, dependency, and losing one’s intellectual capacities, as ingredients of a ‘less good’ or even ‘bad death’, not only leads to limited alternative visions of a good and dignified death, it also seriously limits the wide range of possibilities of experiencing a good death.
We may thus be better off widening the end-of-life debate from an individualistic choice-focus to a more societal and collective focus that more prominently takes into account the logic of care. In her work on the logic of choice and the logic of care, Annemarie Mol argues that those logics should not be understood as completely opposite positions, but rather as complementary. Expanding the public debate with notions of care could perhaps foster reimagining a broader range of alternative attractive identities and roles within the societal discourse on death and dying in old age. For instance, a logic of care approach could provide images of older people as active contributors to processes of care: engaged with caregivers, formulating care needs, taking part in care processes, receiving care and responding to it, et cetera.
The relative absence of attractive alternative identities beyond the choice-logic, demonstrates the importance of such a rethinking-enterprise. It could help us to do more justice to the diversity and variety of relevant identities and roles in late life and, as such, contribute to a less polarised debate on good death in old age.
This blog draws on a discourse study published in Social Science & Medicine. The study was supported by an Innovational Research Incentives Scheme VENI grant from the Dutch Research Council; (project number VI. Veni.191F.016).
About the Author
Els van Wijngaarden. Associate Professor in Contemporary Meanings of Ageing and Dying, Department of Anesthesiology, Pain and Palliative Medicine Radboud University Medical Center, Nijmegen, the Netherlands
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