We Need to Rethink Death

In a world where people’s view of death, attitudes toward grieving, and access to end-of-life health care have become "unbalanced", death needs to be fundamentally reassessed. A group of experts has called for this.

According to the Lancet Commission on the Value of Death (Lancet Commission on the Value of Death), many people now die under terminal (end-stage) care in hospitals; nevertheless, many patients continue to receive inadequate supportive care, die from preventable conditions, and lack access to basic painkillers. In Eastern societies, a greater difficulty is that patients and their caregivers are unprepared for death, which is as natural as birth; they are not even ready to talk about death.

Health care settings, particularly hospitals, are now places where many people encounter death. Trust has been lost because the natural process of dying and the concept of grieving have been relegated to second or even third place in these settings.

As a result, inadequate information, sometimes misdirection by alternative practitioners, a doctor’s desire to overtreat, unrealistic expectations of the patient – often of their relatives – and an inability to discuss death can lead to futile or potentially inappropriate treatment continuing until the final hours of life. Opportunities to relieve pain or distress may also be missed during this time.

• Related topic: Living wills and advance care planning

The COVID-19 Pandemic Exposed Us to More "Medicalized Death"

The COVID-19 Pandemic, focused people’s attention on death through daily news reports of people dying on ventilators. 

Palliative medicine specialist and commission co-chair Dr. Libby Sallnow said: "Over the past 60 years, the way people die has changed considerably, from limited medical support for the natural process of dying at home to limited family support during dying in hospital." In the United Kingdom, only 1 in every 5 people who need end-of-life care dies at home, while about half die in hospital.

According to the report, even in high-income countries many people cannot experience a natural death at home, while in poorer countries hundreds of thousands of people die without health professionals knowing.

The Price of Living Longer: More Chronic Disease

Global life expectancy rose steadily from 66.8 years in 2000 to 73.4 years in 2019. However, the increase in life expectancy has meant that more people spend these additional years in poor health, and the years lived with chronic diseases and their complications increased from 8.6 in 2000 to 10 in 2019.

Before 1950, deaths were mainly the result of acute illness or injury, with little involvement of doctors or technology. Today, however, most deaths result from chronic diseases, with a high level of involvement of doctors and technology.

Scientific advances and their applications in medicine have created the illusion that death can be defeated or at least postponed almost indefinitely; yet medicine’s critical contribution was preventing premature deaths.

The report says, "Dying people are taken to hospitals or hospices, and while two generations ago most children witnessed a death at home, people may now be in their 40s or 50s without ever having witnessed the moment of death". "The language, knowledge, and confidence needed to support and manage dying are being lost, further increasing dependence on health care."

Yet in an age when we can relieve symptoms such as pain with low-cost, evidence-based methods, is the further medicalization of death not a striking inconsistency?!

• Related topic: How should cancer pain be assessed and treated? 

The World Health Organization (WHO) estimates that globally only 14% of people who need it have access to ideal end-of-life care.

Rethinking Death and Dying

A fundamental rethink of death is needed to rebalance and change our expectations of and relationship with death.

To achieve these changes, the commission made key recommendations for policymakers, health and social care systems, civil society, and communities. These include:

• Education about death and end-of-life care should be essential for patients at the end of life, their families, and health and social care professionals.
• Improving access to pain relief at the end of life should be a global priority, and pain management should stand alongside, rather than behind, prolonging life as a field of research and a health care priority.
• Everyday conversations and stories about death and grief should be encouraged.
• Care networks should provide support for people who are dying, caring for patients, and grieving.
• Patients and their families should be given clear information about uncertainties as well as the potential benefits, risks, and harms of interventions for potentially life-limiting/threatening illnesses so that they can make better-informed decisions.
• Governments should create and promote policies in all countries to support caregivers and permit end-of-life decisions such as “less intervention.”

Mpho Tutu van Furth, a Dutch priest and one of the report’s authors, 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."

Writer and futurist Ian Morrison, who describes himself as Scottish-Canadian-Californian, once said: "The Scots see death as imminent at any moment. Canadians see death as inevitable, and Californians see death as optional."

As things currently stand, the authors of the Lancet Commission say: "The world is moving toward California rather than Scotland."

They conclude by writing: "We conclude with our central argument. Death and dying should be recognized as not only normal but also valuable. Support and care for dying people and the bereaved should be rebalanced, and we call on people in society to respond to this challenge."