HEALTH AND SOCIAL systems around the world are failing to give appropriate, compassionate care to people who are dying and their families, according to a new report. 

A new Lancet Commission has said today’s current overemphasis on aggressive treatments to prolong life, vast global inequities in palliative care access, and high end-of-life medical costs have led millions of people to suffer unnecessarily at the end of life. 

The Commission has called for public attitudes to death and dying to be rebalanced, away from a narrow, medicalised approach towards a compassionate community model, where communities and families work with health and social care services to care for people dying. 

Bringing together experts in health and social care, social science, economics, philosophy, political science, theology, community work, as well as patient and community activists, the Commission has analysed how societies around the world perceive death and care for people dying, providing recommendations to policymakers, governments, civil society, and health and social care systems.

“The Covid-19 pandemic has seen many people die the ultimate medicalised death, often alone but for masked staff in hospitals and intensive care units, unable to communicate with their families, except digitally,” says Dr Libby Sallnow, co-Chair of the Commission.

“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. 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.”

The Commission focuses primarily on the time from when a person is diagnosed with a life-limiting illness or injury, to their death and the bereavement affecting the lives of those left behind – it does not cover sudden or violent deaths, deaths of children, or deaths due to injustice.

Over-medicalised

Over the past 60 years, dying has moved away from the family and community setting to become primarily the concern of health systems. In the UK, for example, only one in five people who require end of life care are at home, while about half are in hospital. 

Global life expectancy has risen steadily from 66.8 years in 2000 to 73.4 years in 2019. But, as people are living longer, they are living more of these additional years in poor health, with years lived with disability increasing from 8.6 years in 2000 to 10 years in 2019. 

Prior to the 1950s, deaths were predominantly a result of acute disease or injury, with low involvement from doctors or technology. Today, the majority of deaths are from chronic disease, with a high level of involvement from doctors and technology, the Lancet says. 

And, as healthcare has moved centre stage, families and communities have been increasingly alienated. The language, knowledge, and confidence to support and manage dying have been slowly lost, further fuelling a dependence on health systems, the Commission says.

Despite this, rather than being viewed as a professional responsibility for the doctor, and a right for all people and families who wish it, conversations about death and dying can be difficult and uncomfortable and too often happen in times of crisis. Often they don’t happen at all, it notes.

While palliative care has gained attention as a speciality, over half of all deaths happen without palliative care or pain relief, and health and social inequalities persist in death, it says. 

The Commission adds that interventions often continue to the last days with minimal attention to suffering. Medical culture, fear of litigation, and financial incentives also contribute to overtreatment at the end of life, further fuelling institutional deaths and the sense that professionals must manage death.

Untreated suffering, vast inequalities, and aggressive medical treatments have come at a high cost, the Lancet says. A disproportionate share of the total annual expenditure in high income countries goes towards treatment for those who die, suggesting that treatments at the end of life are being provided at a much higher threshold than for other treatments.

In high income countries, between 8% and 11.2% of annual health expenditure for the entire population is on the less than 1% who die that year. Care in the last month of life is costly and, in countries without universal health coverage, can be a cause of families falling into poverty.

“Caring for the dying really involves infusing meaning into the time left. It is a time for achieving physical comfort; for coming to acceptance and making peace with oneself; for many hugs; for repairing broken bridges of relationships and for building new ones. It is a time for giving love and receiving love, with dignity,” says co-author Dr MR Rajagopal.

“Respectful palliative care facilitates this. But it can be achieved only with broad-based community awareness and action to change the status quo.”

To achieve the widespread changes it says is needed, the Commission has set out key recommendations for policymakers, health and social care systems, civil society, and communities, which 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.