“I want to die in my sleep”—how people think about death, choice, and control: findings from a Massive Open Online Course

Abstract

Background: Complex social and ethical debates about voluntary assisted dying (euthanasia), palliative care, and advance care planning are presently being worked through in many developed countries, and the policy implications of these discussions for palliative care are potentially very significant. However, community attitudes to death and dying are complex, multilayered, and contain many mixed messages. Methods: Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn. This provided an opportunity to explore societal and personal attitudes to wishes and beliefs around death and dying. For one activity in the MOOC, participants responded to a question asking them about "the best way to go". Results: Responses were subjected to thematic analysis, during which they were coded for conceptual categories. This analysis showed how acceptance of death as a natural and normal process, and as a shared event that affects a whole social network, may nonetheless be accompanied by deep reluctance to address the physical process of dying (i.e., "avoidant acceptance"). Conclusions: Our findings highlighted a desire for choice and control in relation to dying, which is a common element in discussions of both advance care planning and palliative care. This same focus may contribute to a perception that voluntary assisted dying/euthanasia is a necessary strategy for ensuring that people have control over their dying process. We discuss the paradox of individuals wanting to have control whilst preferring not to know that they are dying.

Travelling to die: views, attitudes and end-of-life preferences of Israelis considering receiving aid-in-dying in Switzerland

“…Similar to other studies [ 19 , 50 ], a strong focus on controlling death and dying, as well as their timing and how these are perceived by others, is also reflected in the study findings. The idea of control is addressed early on, with participants considering the many details required for this process, and through their sharing their plan, consulting, and seeking helps from others.…”

“…The "beautiful death" depicted in the alternative offered by the travel to Switzerland is also contrasted with a state of "disadvantaged dying" [ 48 , 49 ], characterized by imposing a burden on the participants' loved ones, especially with a prolonged dying process. The participants’ fear of being a burden or causing distress to family members, which goes hand in hand with their being strong independent individuals, is in line with how people imagine a desirable death [ 19 ].…”

“…Moreover, participants in this study reflect the idea that pain and suffering are experiences from which one should escape before they require too much from them and before they diminish all signs of human dignity and sense of living. This concept is in line with people's wish to die in their sleep, not being aware of the actual dying phase [ 19 ]. However, one may argue that it is this state of affairs that exposes human vulnerability and calls for a giving and caring relationship that is reciprocal and central to a culture [ 2 ].…”

“…Gaignard and Hurst [ 17 ] found similar themes in interviews conducted with right-to-die professionals and volunteers regarding existential suffering in relation to aid-in-dying in Switzerland. Moreover, studies show that people who consider life and death decisions also consider the views of their social environment, specifically their loved ones and consult with them [ 18 ], even focusing on their loved ones’ needs more than on their own needs as the dying person [ 19 ].…”

Rethinking Death Education as Part of Public Health Policy

“…In other words, there is a need for policies to disseminate the living will, especially in the older population, to exercise autonomy and prevent futility treatments. Talking about the end of life with a trusted person is the first step to be able to write down the wishes / wishes to be fulfilled when the person is at the end of life [23,24]. g) Finally, in some countries, the decriminalisation of assisted dying is being discussed.…”