Feb. 1, 2022 -- Experts have called for a fundamental re-assessment of dying in a world where public attitudes to death and grieving, and access to end-of-life healthcare have become "unbalanced".

Although many people face an over-medicalized death, others are more likely to remain undertreated, dying of preventable conditions, and without access to basic pain relief, according to the Lancet Commission on the Value of Death.

It argues that: "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."

As a result: "Futile or potentially inappropriate treatment can continue into the last hours of life," with the roles of families and communities "replaced by professionals and protocols".

COVID Pandemic Exposed Us to 'The Ultimate Medicalized Death'

The COVID-19 pandemic focused public attention on death, with daily news reports of people dying on ventilators, "looked after by masked and gowned staff, and only able to communicate with family through screens,” in what was "the ultimate medicalized death".

Libby Sallnow, MD, a palliative medicine consultant and co-chair of the commission, said: "How people die has changed dramatically over the past 60 years, from a family event with occasional medical support, to a medical event with limited family support." In the U.K., only 1 in 5 people who require end of life care are at home, while around half are in hospital.

Yet even in high-income countries, many people have died at home with minimal support, and hundreds of thousands of people in poorer countries have died with no care from health professionals, the report says.

The Price of Living Longer: More Chronic Disease

Global life expectancy has risen steadily from 66.8 years in 2000 to 73.4 years in 2019. But increasing longevity has led to more people living those additional years in poor health, with years lived with disability increasing from 8.6 years in 2000 to 10 years in 2019.

Prior to 1950, deaths were predominantly a result of acute disease or injury, with low involvement from doctors or technology, but today, most deaths are from chronic disease, with a high level of involvement from doctors and technology.

Medical advances have bolstered a view that death can be defeated, or at least put off almost indefinitely.

"Dying people are whisked away to hospitals or hospices, and whereas two generations ago most children would have seen a dead body, people may now be in their 40s or 50s without ever seeing a dead person," the report says. "The language, knowledge, and confidence to support and manage dying are being lost, further fuelling a dependence on health-care services."

It highlights a "striking inconsistency with the progressive medicalization of death and dying" that "has not led to a parallel increase in relief of symptoms such as pain

with low-cost, evidence-based methods, nor has it led to universal access to palliative care services at the end of life".

The World Health Organization has estimated that globally, only 14% of people in need can access such care.

Rethinking Death and Dying

Sallnow, who is honorary senior clinical lecturer at St Christopher's Hospice and University College London, continued: "A fundamental rethink is needed in how we care for the dying, our expectations around death, and the changes required in society to rebalance our relationship with death."

To achieve those changes, the Commission sets out key recommendations for policy makers, health and social care systems, civil society, and communities. These include:

  • Education on death, dying, and end of life care should be essential for people at the end of life, their families, and health and social care professionals
  • Increasing access to pain relief at the end of life must be a global priority, and the management of suffering should sit alongside the extension of life as a research and health care priority
  • Conversations and stories about everyday death, dying, and grief must be encouraged
  • Networks of care must lead support for people dying, caring, and grieving
  • Patients and their families should be provided with clear information about the uncertainties as well as the potential benefits, risks, and harms of interventions in potentially life-limiting illness, to enable more informed decisions
  • Governments should create and promote policies to support informal carers and paid compassionate or bereavement leave in all countries.

Mpho Tutu van Furth, a priest from the Netherlands, and report co-author, commented: "We will all die. Death is not only or, even, always a medical event. Death is always a social, physical, psychological, and spiritual event, and when we understand it as such, we more rightly value each participant in the drama."

Author and futurist Ian Morrison, who described himself as Scottish – Canadian – Californian, once said: "Scots see death as imminent. Canadians see death as inevitable. And Californians see death as optional."

The Lancet Commission authors say that, as things stand: "The world is moving more in the direction of California than that of Scotland."

They write: "We conclude with our core contention: 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."

The Commission report was led by Portsmouth Hospitals, University NHS Trust, Georgetown University, Washington, D.C., and King's College London.