Report of the Lancet Commission on the Value of Death: bringing death back into life

The story of dying in the 21st century is a story of paradox. While many people are overtreated in hospitals with families and communities relegated to the margins, still more remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for this Commission. How people die has changed radically over recent generations. Death comes later in life for many and dying is often prolonged. Death and dying have moved from a family and community setting to primarily the domain of health systems. Futile or potentially inappropriate treatment can continue into the last hours of life. The roles of families and communities have receded as death and dying have become unfamiliar and skills, traditions, and knowledge are lost. Death and dying have become unbalanced in high-income countries, and increasingly in low-and-middle-income countries; there is an excessive focus on clinical interventions at the end of life, to the detriment of broader inputs and contributions. The COVID-19 pandemic has meant that death is prominent in daily media reports and health systems have been overwhelmed. People have died the ultimate medicalised deaths, often alone but for masked staff in hospitals and intensive care units, unable to communicate with family except electronically. This situation has further fuelled the fear of death, reinforcing the idea of health-care services as the custodian of death. Climate change, the COVID-19 pandemic, environmental destruction, 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. Health care and individuals appear to struggle to accept the inevitability of death. Philosophers and theologians from around the globe have recognised the value that death holds for human life. Death and life are bound together: without death there would be no life. Death allows new ideas and new ways. Death also reminds us of our fragility and sameness: we all die. Caring for the dying is a gift, as some philosophers and many carers, both lay and professional, have recognised. 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. Treatment in the last months of life is costly and a cause of families falling into poverty in countries without universal health coverage. In high-income countries between 8% and 11·2% of annual health expenditure for the entire population is spent on the less than 1% who die in that year. Some of this high expenditure is justified, but there is evidence that patients and health professionals hope for better outcomes than are likely, meaning treatment that is intended to be curative often continues for too long. Conversations about death and dying can be difficult. Doctors, patients, or family members may find it easier to avoid them altogether and continue treatment, leading to inappropriate treatment at the end of life. Palliative care can provide better outcomes for patients and carers at the end of life, leading to improved quality of life, often at a lower cost, but attempts to influence mainstream health-care services have had limited success and palliative care broadly remains a service-based response to this social concern. Rebalancing death and dying will depend on changes across 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. A reductionist, linear approach that fails to recognise the complexity of the death system will not achieve the rebalancing needed. Just as they have during the COVID-19 pandemic, the disadvantaged and powerless suffer most from the imbalance in care when dying and grieving. Income, education, gender, race, ethnicity, sexual orientation, and other factors influence how much people suffer in death systems and the capacity they possess to change them. Radically reimagining a better system for death and dying, the Lancet Commission on the Value of Death has set out the five principles of a realistic utopia: a new vision of how death and dying could be. The five principles are: the social determinants of death, dying, and grieving are tackled; dying is understood to be a relational and spiritual process rather than simply a physiological event; networks of care lead support for people dying, caring, and grieving; conversations and stories about everyday death, dying, and grief become common; and death is recognised as having value. Systems are constantly changing, and many programmes are underway that encourage the rebalancing of our relationship with death, dying, and grieving. Communities from varied geographies are challenging norms and rules about caring for dying people, and models of citizen and community action, such as compassionate communities, are emerging. Policy and legislation changes are recognising the impact of bereavement and supporting the availability of medication to manage pain when dying. Hospitals are changing their culture to openly acknowledge death and dying; health-care systems are beginning to work in partnership with patients, families, and the public on these issues and to integrate holistic care of the dying throughout health services. Key messages•Dying in the 21st century is a story of paradox. Although many people are overtreated in hospitals, still more remain undertreated, dying of preventable conditions and without access to basic pain relief.•Death, dying, and grieving today have become unbalanced. Health care is now the context in which many encounter death and as families and communities have been pushed to the margins, their familiarity and confidence in supporting death, dying, and grieving has diminished. Relationships and networks are being replaced by professionals and protocols.•Climate change, the COVID-19 pandemic, and our wish to defeat death all have their origins in the delusion that we in control of, not part of, nature.•Rebalancing death and dying will depend on changes across 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.•The disadvantaged and powerless suffer most from the imbalance in care for those dying and grieving.•The Lancet Commission on the Value of Death sets out five principles of a realistic utopia, a new vision of how death and dying could be. The five principles are: the social determinants of death, dying, and grieving are tackled; dying is understood to be a relational and spiritual process rather than simply a physiological event; networks of care lead support for people dying, caring, and grieving; conversations and stories about everyday death, dying, and grief become common; and death is recognised as having value.•The challenge of transforming how people die and grieve today has been recognised and responded to by many around the world. Communities are reclaiming death, dying and grief as social concerns, restrictive policies on opioid availability are being transformed and health-care professionals are working in partnership with people and families, but more is needed.•To achieve our ambition to rebalance death, dying and grieving, radical changes across all death systems are needed. It is a responsibility for us all, including global bodies and governments, to take up this challenge. The Commission will continue its work in this area. •Dying in the 21st century is a story of paradox. Although many people are overtreated in hospitals, still more remain undertreated, dying of preventable conditions and without access to basic pain relief.•Death, dying, and grieving today have become unbalanced. Health care is now the context in which many encounter death and as families and communities have been pushed to the margins, their familiarity and confidence in supporting death, dying, and grieving has diminished. Relationships and networks are being replaced by professionals and protocols.•Climate change, the COVID-19 pandemic, and our wish to defeat death all have their origins in the delusion that we in control of, not part of, nature.•Rebalancing death and dying will depend on changes across 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.•The disadvantaged and powerless suffer most from the imbalance in care for those dying and grieving.•The Lancet Commission on the Value of Death sets out five principles of a realistic utopia, a new vision of how death and dying could be. The five principles are: the social determinants of death, dying, and grieving are tackled; dying is understood to be a relational and spiritual process rather than simply a physiological event; networks of care lead support for people dying, caring, and grieving; conversations and stories about everyday death, dying, and grief become common; and death is recognised as having value.•The challenge of transforming how people die and grieve today has been recognised and responded to by many around the world. Communities are reclaiming death, dying and grief as social concerns, restrictive policies on opioid availability are being transformed and health-care professionals are working in partnership with people and families, but more is needed.•To achieve our ambition to rebalance death, dying and grieving, radical changes across all death systems are needed. It is a responsibility for us all, including global bodies and governments, to take up this challenge. The Commission will continue its work in this area. These innovations do not yet amount to a whole system change, but something very close to the Commission's realistic utopia has been achieved in Kerala, India, over the past three decades. Death and dying have been reclaimed as a social concern and responsibility through a broad social movement comprised of tens of thousands of volunteers complemented by changes to political, legal, and health systems. To achieve the ambition of radical change across death systems we present a series of recommendations, outlining the next steps that we urge policy makers, health and social care systems, civil society, and communities to take. Death and dying must be recognised as not only normal, but valuable. Care of the dying and grieving must be rebalanced, and we call on people throughout society to respond to this challenge. “How pathetic it was to try to relegate death to the periphery of life when death was at the centre of everything.”Elif Shafak, Turkish novelist The proposition of the Lancet Commission on the Value of Death is that our relationship with death and dying has become unbalanced, and we advocate a rebalancing. At the core of this rebalancing must be relationships and partnerships between people who are dying, families, communities, health and social care systems, and wider civic society. In high-income countries, death and dying have become unbalanced as they moved from the context of family, community, relationships, and culture to sit within the health-care system. Health care has a role in the care of the dying, but interventions at end of life are often excessive,1Langton JM Blanch B Drew AK Haas M Ingham JM Pearson SA Retrospective studies of end-of-life resource utilization and costs in cancer care using health administrative data: a systematic review.Palliat Med. 2014; 28: 1167-1196Google Scholar, 2Juthani-Mehta M Malani PN Mitchell SL Antimicrobials at the end of life: an opportunity to improve palliative care and infection management.JAMA. 2015; 314: 2017-2018Google Scholar exclude contributions from families and friends,3Kellehear A Compassionate Cities. Routledge, Oxford2005Google Scholar increase suffering,4National Confidential Enquiry into Patient Outcome and Death (NCEPOD)For better, for worse? a review of the care of patients who died within 30 days of receiving systemic anti-cancer therapy. NCEPOD, London2008Google Scholar, 5Cassell EJ The nature of suffering and the goals of medicine. Oxford University Press, Oxford2004Google Scholar and consume resources that could otherwise be used to meet other needs.6Brownlee S Chalkidou K Doust J et al.Evidence for overuse of medical services around the world.Lancet. 2017; 390: 156-168Google Scholar This lack of balance in high-income countries is spreading to low-and-middle-income countries, a form of modern colonialism, and the imbalance may be worse in low-and-middle-income countries, as this report will show. The relationship with death and dying in low-and-middle-income countries is unbalanced as the rich receive excessive care, while the poor, the majority, receive little or no attention or relief of suffering and have no access to opioids, as the Lancet Commission on Global Access to Palliative Care and Pain Relief showed.7Knaul FM Farmer PE Krakauer EL et al.Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report.Lancet. 2017; 391: 1391-1454Google Scholar Excessive treatment for the rich and inadequate or absent care for the poor is a paradox and a failing of global health and solidarity. Readers may wonder about the title of the Commission: the Lancet Commission on the Value of Death. The title has its origins in the Lancet planning a Commission on the value of life. It's an age-old idea that a good life and a good death go together. Our title has proved to be a rich source of thinking, helping us recognise the value of death in a world that tends to deny death any value. The simplest proposition of the value of death is that “without death every birth would be a tragedy”, and in a very crowded world we are the edge of such a tragedy. In the report we explore the many values of death. The Commission began its work before the COVID-19 pandemic arrived, bringing death to television screens every night. Dying on a ventilator, looked after by masked and gowned staff, and only able to communicate with family through screens, is the ultimate medicalised death. Yet even in high-income countries, many have died at home with minimal support, and in low-and-middle-income countries hundreds of thousands have died with no care from health professionals. The capacity of health services was exceeded in many countries during the course of 2020 and 2021. The Commissioners wondered whether death and dying rising so high on the agenda would change attitudes to death and dying, perhaps bringing greater acceptance of death and a recognition of its imbalanced nature. As 2021 draws to a close, we see no evidence of such a change. Indeed, we see signs of the opposite: governments have prioritised attempts to reduce only the number of deaths and not the amount of suffering; huge emphasis has been placed on ventilators and intensive care and little on palliative care; bereavement has been overlooked; anxiety about death and dying seems to have increased;8Menzies RE Neimeyer RA Menzies RG Death anxiety, loss, and grief in the time of COVID-19.Behav Change. 2020; 37: 111-115Google Scholar, 9Özer Ö Özkan O Özmen S Erçoban N Investigation of the effect of COVID-19 perceived risk on death anxiety, satisfaction with life, and psychological well-being.Omega (Westport). 2021; (published online June 19.)https://doi.org/10.1177/00302228211026169Google Scholar death and dying has come to belong still more to health care, with families and communities excluded; and we hear from Commissioners stories of doctors increasing their efforts to fend off death from causes other than COVID-19. The great success with vaccines has perhaps further fuelled the fantasy that science can defeat death. Scholarly research on changes in attitudes to death and dying is limited at this early stage, but the historian Yuval Noah Harari has asked whether the pandemic will change attitudes to death and dying and what humanity's takeaway will be: “In all likelihood, it will be that we need to invest even more efforts in protecting human lives. We need to have more hospitals, more doctors, more nurses. We need to stockpile more respiratory machines, more protective gear, more testing kits.”10Harari YN Will coronavirus change our attitudes to death? Quite the opposite.Guardian. 2020; (published online April 20.)https://www.theguardian.com/books/2020/apr/20/yuval-noah-harari-will-coronavirus-change-our-attitudes-to-death-quite-the-oppositeDate accessed: January 22, 2022Google Scholar At the start of the COVID-19 pandemic we thought that perhaps a report on the value of death would not be welcome after millions of deaths, but we now think the opposite—that the pandemic makes our report more relevant, and our recommendations will make us better able to respond to the next pandemic. Although the pandemic seems not to have encouraged greater acceptance of death, it has been accompanied by a rapid rise in concern about the ecological crisis, including climate change. COP26 (Conference of the Parties), the annual UN meeting on climate change, held in Glasgow in November, 2021, achieved far greater media coverage and stronger commitments to reduce carbon emissions than any previous meeting, although the commitments are not enough to prevent serious harm to health. This increase in concern has various roots, but the pandemic has reminded us that we are part of nature, not in control of nature. The pandemic and the ecological crisis are both caused by our failure to recognise our connection with nature and our destruction of the natural environment. The Commission believes that the drive to fend off death and pursue a dramatic extension in length of life also arises from a failure to recognise that we are part of nature; and as financial cost and carbon consumption are closely related to expensive care, treatment at the end of life will be an important contribution to the carbon footprint of health care. Were it a country, health care would be the world's fifth largest emitter of greenhouse gases.11Healthcare Without HarmHealthcare's carbon footprint. Healthcare without harm.https://www.arup.com/perspectives/publications/research/section/healthcares-climate-footprintDate: 2019Date accessed: January 22, 2022Google Scholar Unfortunately, the carbon footprint of most health systems is rising when it needs to fall to net-zero by the middle of the century.12Watts N Amann M Arnell N et al.The 2019 report of The Lancet Countdown on health and climate change: ensuring that the health of a child born today is not defined by a changing climate.Lancet. 2019; 394: 1836-1878Google Scholar Panel 1 discusses further the connection between climate change, the ecological crisis, and death and dying.Panel 1Death and the climate crisisThe Covid-19 pandemic has revealed our global interdependence and the fragility of our support systems and economy. The Canadian archeologist and author, Ronald Wright, described how every empire that has ever existed has collapsed, usually for ecological reasons.13Wight R A short history of progress. House of Anansi Press, Toronto2004Google Scholar Now, he points out, we are one global empire. The COVID-19 pandemic will pass, like the epidemics before it, but damage to the climate and the planet will be irreparable. The Intergovernmental Panel on Climate Change (IPCC) advises that we have only a dozen years to avoid that damage,14Masson-Delmotte VP Zhai H-O Pörtner D et al.Global Warming of 1.5°C. An IPCC Special Report on the impacts of global warming of 1.5°C above pre-industrial levels and related global greenhouse gas emission pathways, in the context of strengthening the global response to the threat of climate change, sustainable development, and efforts to eradicate poverty. World Meteorological Organization, Geneva2018Google Scholar but carbon emissions are increasing by about 7% annually, not decreasing by 7%, as the IPCC says is necessary.Everything, and especially death, must be thought of in the context of the climate crisis. Before the pandemic we were on track for a temperature increase of 8·5 degrees Celsius over preindustrial levels, which, as Nature pointed out, would lead us to conditions like that of the Permian extinction event, when some 95% of all life forms were made extinct.15Foster GL Royer DL Lunt DJ Future climate forcing potentially without precedent in the last 420 million years.Nat Commun. 2017; 814845Google Scholar The IPCC says that global temperature increases must be kept below 1·5°C. Already we are close to an increase of 1·3°C, and the effects are being felt now.Carbon emissions are a function of the number of humans, currently 7·9 billion, and the carbon they each consume. The average Briton consumes 5·6 metric tons of carbon each year (16·1 tons for Americans), whereas the average Bangladeshi consumes 0·6 metric tons. If the world is to reach net-zero carbon emissions by 2050 then people in rich countries will have to consume much less carbon and shift resources to lower income countries. The UK Health Alliance on Climate Change says that this shift would mean, for example, Britons consuming 0·5 metric tons each year16UK Health Alliance for Climate ChangeCall to action.https://action.ukhealthalliance.org/page/76199/petition/1Date: 2021Date accessed: January 22, 2022Google Scholar—a dramatic change, but one that would lead to an improvement in health as people drive less, exercise more, and eat diets low in animal products and high in fruit and vegetables.Health systems account for a substantial proportion of country's carbon emissions—12% in the USA and 5% in the UK.12Watts N Amann M Arnell N et al.The 2019 report of The Lancet Countdown on health and climate change: ensuring that the health of a child born today is not defined by a changing climate.Lancet. 2019; 394: 1836-1878Google Scholar Carbon emissions from health systems are currently increasing,12Watts N Amann M Arnell N et al.The 2019 report of The Lancet Countdown on health and climate change: ensuring that the health of a child born today is not defined by a changing climate.Lancet. 2019; 394: 1836-1878Google Scholar although some organisations are attempting to reverse this trend. NHS England has published a detailed plan of how it plans to reach net-zero by 2045.17NHS EnglandDelivering a ‘Net Zero’ National Health Service. NHSEI, London2020https://www.england.nhs.uk/greenernhs/publication/delivering-a-net-zero-national-health-service/Date accessed: January 22, 2022Google ScholarThe carbon footprint of health systems can be reduced by activities like switching to renewable energy, reducing travel, and redesigning buildings, but it will also mean changing clinical practice. Increasingly the carbon consumption of clinical activity will matter more than the financial cost, and methods exist to capture this consumption.18Sustainable Healthcare CoalitionSustainable care pathways guidance.https://shcpathways.org/Date accessed: January 22, 2022Google Scholar This Commission has summarised evidence of excessive treatment at the end of life. We now need to assemble evidence on the carbon cost: while the dead consume no carbon, the disposal of bodies does.About three quarters of people in Britain are cremated after death, releasing carbon into the air. Alkaline hydrolysis, in which the body is dissolved, has about a seventh of the carbon footprint of cremation, and the resulting fluid can be used as fertiliser. A Dutch study of the disposal of bodies found that the lowest amount of money that it would theoretically cost to compensate in terms of the carbon footprint per body was €63·66 for traditional burial, €48·47 for cremation, and €2·59 for alkaline hydrolysis.19Kremer W Dissolving the dead.https://www.bbc.co.uk/news/resources/idt-sh/dissolving_the_deadDate: 2017Date accessed: January 22, 2022Google Scholar Composting or natural burial are alternatives.If we are to survive the climate crisis then almost everything will have to change, including health care, end-of-life care, and how we dispose of the dead. In the widely acclaimed novel Overstory, a eulogy to trees and nature, a leading environmentalist asks the audience at a conference what they can best do to counter climate change and environmental destruction: her answer is, to die. The Covid-19 pandemic has revealed our global interdependence and the fragility of our support systems and economy. The Canadian archeologist and author, Ronald Wright, described how every empire that has ever existed has collapsed, usually for ecological reasons.13Wight R A short history of progress. House of Anansi Press, Toronto2004Google Scholar Now, he points out, we are one global empire. The COVID-19 pandemic will pass, like the epidemics before it, but damage to the climate and the planet will be irreparable. The Intergovernmental Panel on Climate Change (IPCC) advises that we have only a dozen years to avoid that damage,14Masson-Delmotte VP Zhai H-O Pörtner D et al.Global Warming of 1.5°C. An IPCC Special Report on the impacts of global warming of 1.5°C above pre-industrial levels and related global greenhouse gas emission pathways, in the context of strengthening the global response to the threat of climate change, sustainable development, and efforts to eradicate poverty. World Meteorological Organization, Geneva2018Google Scholar but carbon emissions are increasing by about 7% annually, not decreasing by 7%, as the IPCC says is necessary. Everything, and especially death, must be thought of in the context of the climate crisis. Before the pandemic we were on track for a temperature increase of 8·5 degrees Celsius over preindustrial levels, which, as Nature pointed out, would lead us to conditions like that of the Permian extinction event, when some 95% of all life forms were made extinct.15Foster GL Royer DL Lunt DJ Future climate forcing potentially without precedent in the last 420 million years.Nat Commun. 2017; 814845Google Scholar The IPCC says that global temperature increases must be kept below 1·5°C. Already we are close to an increase of 1·3°C, and the effects are being felt now. Carbon emissions are a function of the number of humans, currently 7·9 billion, and the carbon they each consume. The average Briton consumes 5·6 metric tons of carbon each year (16·1 tons for Americans), whereas the average Bangladeshi consumes 0·6 metric tons. If the world is to reach net-zero carbon emissions by 2050 then people in rich countries will have to consume much less carbon and shift resources to lower income countries. The UK Health Alliance on Climate Change says that this shift would mean, for example, Britons consuming 0·5 metric tons each year16UK Health Alliance for Climate ChangeCall to action.https://action.ukhealthalliance.org/page/76199/petition/1Date: 2021Date accessed: January 22, 2022Google Scholar—a dramatic change, but one that would lead to an improvement in health as people drive less, exercise more, and eat diets low in animal products and high in fruit and vegetables. Health systems account for a substantial proportion of country's carbon emissions—12% in the USA and 5% in the UK.12Watts N Amann M Arnell N et al.The 2019 report of The Lancet Countdown on health and climate change: ensuring that the health of a child born today is not defined by a changing climate.Lancet. 2019; 394: 1836-1878Google Scholar Carbon emissions from health systems are currently increasing,12Watts N Amann M Arnell N et al.The 2019 report of The Lancet Countdown on health and climate change: ensuring that the health of a child born today is not defined by a changing climate.Lancet. 2019; 394: 1836-1878Google Scholar although some organisations are attempting to reverse this trend. NHS England has published a detailed plan of how it plans to reach net-zero by 2045.17NHS EnglandDelivering a ‘Net Zero’ National Health Service. NHSEI, London2020https://www.england.nhs.uk/greenernhs/publication/delivering-a-net-zero-national-health-service/Date accessed: January 22, 2022Google Scholar The carbon footprint of health systems can be reduced by activities like switching to renewable energy, reducing travel, and redesigning buildings, but it will also mean changing clinical practice. Increasingly the carbon consumption of clinical activity will matter more than the financial cost, and methods exist to capture this consumption.18Sustainable Healthcare CoalitionSustainable care pathways guidance.https://shcpathways.org/Date accessed: January 22, 2022Google Scholar This Commission has summarised evidence of excessive treatment at the end of life. We now need to assemble evidence on the carbon cost: while the dead consume no carbon, the disposal of bodies does. About three quarters of people in Britain are cremated after death, releasing carbon into the air. Alkaline hydrolysis, in which the body is dissolved, has about a seventh of the carbon footprint of cremation, and the resulting fluid can be used as fertiliser. A Dutch study of the disposal of bodies found that the lowest amount of money that it would theoretically cost to compensate in terms of the carbon footprint per body was €63·66 for traditional burial, €48·47 for cremation, and €2·59 for alkaline hydrolysis.19Kremer W Dissolving the dead.https://www.bbc.co.uk/news/resources/idt-sh/dissolving_the_deadDate: 2017Date accessed: January 22, 2022Google Scholar Composting or natural burial are alternatives. If we are to survive the climate crisis