The publication of a new paper has reignited the age-old debate on the term ‘a good death’. Here, we discuss some of the discussions that emerged as a consequence; Twitter was asked the question, ‘A good death: tyranny or useful concept?’ The responses were critical, varied, came from across the globe, and suggest there remains significant controversy in this topic.
Much of the discussion centred on the normative nature of ‘a good death’, and how damaging a single ideal of ‘a good death’ can be. Creating a set of ideals for such a complex, universal, process can set dying people, caregivers, health and social care professionals and wider communities up to fail. Beyond the sense of failure that the concept can engender, current conceptualisations present a medicalised or professionalised ideal of death, suggesting that the power to achieve ‘a good death’ is held by health and social care services.
Language remains central as a powerful descriptor and this was raised by several people. It shapes norms, expectations, and behaviours. The language surrounding the contemporary framing of a good death is no exception: prioritising principles such as autonomy, control, not being a burden, freedom from pain and other symptoms, the right to refuse unwanted interventions, dying at home and the presence of family and friends. The culture, research and politics shaping these contemporary framings stems almost exclusively from the global north, as was highlighted in the discussions, and represents a neo colonial view of death and dying, ignoring the realities of the majority of people living and dying globally.
The concept of choice, so central in much of the contemporary framings of a good death, belies a central challenge with the concept, namely that it ignores the broader social and structural determinants of death and dying. Most people do not have the luxury of choice. Much of the language surrounding a good death in end-of-life care assumes that people have access to and trust in preventative, curative and palliative care services, allowing them to decide when they have had enough, and clinical interventions are no longer wished for. The choice on place of death assumes that home is a safe and desirable place to be, or that a home exists.
This disconnect between the principles described in ‘a good death’ and the lived realities for people living in the global south, or those suffering discrimination or marginalisation in the global north, was captured by one commentator as displaying a ‘let them eat cake’ attitude. Language framing what a good death entails ignore the fact that this is entirely out of reach for the majority of people dying in the world, quite aside from whether these principles hold relevance for global communities. There was agreement from many people commenting that the current framing of ‘a good death’ operates oblivious to the broader socio-political realities of living and dying in the 21st century.
Another line of discussion asked the question about the ability to standardise experiences of death and dying, regardless of how broad or inclusive the framing. Death and dying are universal processes, and death is one of the few events that will affect every person within a population. They are complex processes, shaped and determined by socio-political contexts, culture, personal and family wishes and traditions as well as social and structural determinants. This leads to a diversity of experience that is impossible to standardise, within a village, town, or country, yet alone across the globe. Broadening the current conceptualisations to include a wider set of principles could be just as dangerous and set people up to fail, irrespective of the principles included. A suggestion was made that we should put the concept aside entirely and focus on things that people say matter. It may be that it is not the content of the concept, but the very concept itself that is problematic.
Reflecting on what makes ‘a good death’ and ‘what matters’, leads to questions about whose perspective is being considered. Is primacy given to the dying person, as it is ‘their death’? Or, is it something for those who are around them, their social networks, or carers, or, whisper it, even the care professionals? It is known that how one appraises a death can vary greatly on one’s position, relationship to the dying person, and own personal values. A death that is deemed ‘good‘ by one person could be evaluated in different terms by someone else.
Several alternative terms surfaced during the discussions. ‘Safe dying’, ‘good enough dying’, ‘everyday or ordinary dying’, ‘normal vs normative dying’ or ‘healthy dying’ were all suggested as terms that might move beyond the challenges of ‘a good death’. Interestingly, all moved away from the use of the term death as the description of an event, to dying as a process. People reminded us that dying is something that happens when people are living. Whilst some suggested abandoning the term altogether, believing that consensus is not something we should be aiming for, others felt it could still have use as a term, provided it was used in the most open, flexible and inclusive sense, and was set by people themselves.
The new paper and the debates sparked by questions posed on social media, shine a light on the fact that this is a debate that needs further exploration. We want to provide an opportunity to have these conversations and explore the challenges it raises from different perspectives.
We’ll be hosting a discussion on Monday 7th November at 9.30am GMT, come and join the conversation. Register here to take part.
Authors
Dr. Libby Sallnow (Lead author, Lancet Commission on the Value of Death, United Kingdom)
Prof. Erica Borgstrom (Professor of Medical Anthropology, Open University, United Kingdom)