If death, dying, and grieving are to be rebalanced, radical change is required
Through its programme of commissions, The Lancet identifies “the most pressing issues in science, medicine, and global health, with the aim of providing recommendations that change health policy or improve practice”. The Report of the Lancet Commission on the Value of Death was published online on 31 January, 2022: I am proud to be one of the authors. My fellow commissioners come from all over the world, and from diverse backgrounds, including healthcare, religious life, social science, economics, and philosophy; patients and carers are represented too. We have gathered physically on a few occasions, but over the last two years, it’s all been online. I was invited to join the commission back in 2017 by the co-chair Richard Smith, former editor of the BMJ, who was intrigued that a gastroenterologist had written a book on death (The Way We Die Now).
The title of the commission, Value of Death, came about because The Lancet had also been planning a commission on Value of Life. There is a long philosophical and religious tradition of valuing death – without death, there would be no life. The fact that we all die reminds us of our fragility and sameness. Much of the value of death is no longer recognised in the modern world, but rediscovering this value can help care at the end of life and enhance living.
Our starting point was that many societies and healthcare systems have developed an unhealthy relationship with death and dying. There is often over-treatment at the end of life, which only increases suffering; many doctors find it difficult to be honest and open with people with life-limiting disease and are reluctant to have ‘the difficult conversation’. In high-income countries, death has become primarily a medical event, with families, communities, culture, and ritual increasingly marginalised. Meanwhile, people in low-income countries commonly die without access to opioids, let alone palliative care.
How we die – at least in high-income countries – has changed dramatically since the 1950s: Death comes much later in life; death is slower; the technology to fend off death has increased dramatically; death occurs mainly in institutions (hospitals and care homes). Relationships and networks are being replaced by professionals and protocols. Palliative care can provide better outcomes for patients at the end of life, but broadly remains a service-based response to this social concern. The Covid-19 pandemic has only reinforced the idea of healthcare as the custodian of death.
Climate change, the pandemic, and attitudes to death in high-income countries have similar roots – our delusion that we are in control of, and not part of, nature. Large sums are being invested to dramatically extend life, even achieve immortality, for a small minority in a world that struggles to support its current population.
We argue that death and dying should be rebalanced, with more attention given to the relief of suffering and the cultural aspects of death, and less to the technical and the medical. This rebalancing will depend on changing ‘death systems’ – the many inter-related social, cultural, economic, religious, and political factors that determine how death, dying, and bereavement are understood, experienced, and managed. We have set out five principles of a ‘realistic utopia’: (1) The social determinants of death, dying, and grieving are tackled; (2) Dying is understood to be a relational and spiritual process rather than a medical event; (3) Communities and families become once again the main support for people dying, caring, and grieving; (4) Conversations and stories about death, dying, and grief are shared; (5) Death is recognised as having value.
Something very close to this realistic utopia has been achieved in Kerala, India, over the past three decades, through its community-based palliative care programme, a social movement comprised of tens of thousands of volunteers, supported by health professionals. The programme has led to changes in Kerala’s political, legal, and health systems, and has reclaimed death and dying as a social concern and responsibility. Kerala has inspired other initiatives around the world, such as ‘Compassionate Communities’.
Not surprisingly, there wasn’t consensus on everything among the commissioners and the report includes a figure showing the extent of agreement with several statements – for example, support for assisted dying, where there was considerable disagreement. There was, however, broad agreement for most statements. The document concludes with a set of recommendations for civil society, for healthcare systems, for researchers, and for governments and policy makers. The report is about 30,000 words in length, but it is (I hope) engaging and readable.
If death, dying, and grieving are to be rebalanced, radical changes across all death systems are needed. We all have a stake in this. The report may be out, but that’s only a start: The commission’s work will continue.
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