Highlights THE LANCET : Experts warn of growing overmedicalization of death, call for radical rethinking of how society cares for dying people
|
Health and social systems around the world fail to provide adequate and compassionate care to dying people and their families. According to a new Lancet Commission, the current overemphasis on aggressive life-prolonging treatments, large global inequalities in access to palliative care and high medical costs at the end of life have led millions of people to suffer needlessly at the end of life. end of life.
The Commission calls for a rebalance of public attitudes towards death and dying, away from a narrow, medicalised approach towards a compassionate community model, where communities and families work with health and social services to care for people who they die.
Bringing together experts in health and social care, social sciences, economics, philosophy, political science, theology, community work, as well as patient and community activists, the Commission has analyzed how societies around the world view death and care. people who die, providing recommendations for policymakers, governments, civil society, and health and social care systems.
“The COVID-19 pandemic has seen many people die a definitive medicalized death, often alone, but to masked staff in hospitals and intensive care units, unable to communicate with their families except digitally,” says Dr Libby Sallnow, honorary and palliative medicine consultant. Senior clinical professor at St Christopher’s Hospice and UCL (UK) and co-chair of the Commission, "The way people die has changed dramatically over the last 60 years, from a family event with occasional medical support, to a doctor with limited family support. A fundamental rethinking of how we care for the dying, our expectations around death, and the changes required in society to rebalance our relationship with death are needed.”
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 grief that affects the lives of those left behind; It does not cover sudden or violent deaths, deaths of children or deaths due to injustice.
Death and dying have become overly medicalized, hidden and feared.
Over the last 60 years, dying has moved beyond the family and community environment to become primarily a concern of health systems. In the UK, for example, only one in five people requiring end-of-life care is at home, while around half are in hospital.
Global life expectancy has steadily increased from 66.8 years in 2000 to 73.4 years in 2019. But, as people live longer, they live more of these additional years in poor health, and the years lived with disability increase from 8.6 years in 2000 to 10 years in 2019.
Before the 1950s, deaths were predominantly the result of acute illness or injury, with little involvement from doctors or technology. Today, most deaths are due to chronic diseases, with a high level of involvement of doctors and technology. The idea that death can be defeated is further fueled by advances in science and technology, which have also accelerated over-reliance on end-of-life medical interventions.
And as health care has taken center stage, families and communities have become increasingly alienated. The language, knowledge and confidence to support and manage death have been slowly lost, further fueling dependence on health systems. Despite this, rather than being seen as a professional responsibility of the doctor and a right for all individuals and families who wish to do so, conversations about death and dying can be difficult and uncomfortable and happen all too often in times of crisis. Often they don’t happen at all.
"We are all gonna 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 correctly value each participant in the drama,” adds Commission co-author Mpho Tutu van Furth, priest, Amstelveen, Netherlands. .
All over the world, too many people are dying a miserable death.
While palliative care has gained attention as a specialty, more than half of all deaths occur without palliative care or pain relief , and health and social inequalities persist in death.
Interventions often continue into the final days with minimal attention to suffering. Medical culture, fear of litigation, and financial incentives also contribute to overtreatment at the end of life, further fueling institutional deaths and the sense that professionals must manage death.
Untreated suffering, gross inequalities, and aggressive medical treatments have come at a high cost. A disproportionate share of total annual spending in high-income countries goes to treating those who die, suggesting that end-of-life treatments are provided at a much higher threshold than other treatments.
In high-income countries, between 8% and 11.2% of the annual health expenditure of the entire population falls on less than 1% who die that year. Care in the last month of life is expensive and, in countries without universal health coverage, it can cause families to fall into poverty.
“Dying is part of life, but it has become invisible, and anxiety about death and dying seems to have increased. Our current systems have increased both undertreatment and overtreatment at the end of life, reduced dignity, increased suffering, and enabled misuse of resources. Healthcare services have become the custodians of death, and a fundamental rebalancing in society is needed to reimagine our relationship with death,” says Dr Richard Smith, co-chair of the Commission.
A fundamental change is needed in society’s care for the dying
The Commission establishes five principles of a new vision of death and dying: 1. The social determinants of death, dying and grief must be addressed, to enable people to live healthier lives and die more equitably. 2. Death must be understood as a relational and spiritual process rather than simply a physiological event, meaning that relationships based on connection and compassion are prioritized and become fundamental to the care and support of people who die or they are grieving. 3. Care networks for dying, caring and suffering people must include families, members of the broader community along with professionals. 4. Conversations and stories about everyday death, dying and grief should be encouraged to facilitate broader public conversations, debates and actions. 5. Value must be recognized in death. “Without death, every birth would be a tragedy.” |
The Commission recognizes that small changes are taking place, from community action models for talking about death, changes in national policies to support bereavement, or hospitals working in partnership with families. While large-scale change will take time, the Commission points to the example of Kerala, India, where 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 supplemented by changes in political, legal and health systems.
“Caring for the dying really means infusing meaning into the time that remains . It is a time to achieve physical comfort; to come to accept yourself and make peace with yourself; for many hugs; to repair broken bridges of relationships and to build new ones. It is a time to give love and receive love, with dignity. Respectful palliative care facilitates this. But it can only be achieved with broad-based community awareness and action to change the status quo,” says co-author Dr MR Rajagopal, Pallium India, India.
To achieve the widespread changes needed, the Commission sets out key recommendations for policymakers, health and social care systems, civil society and communities, including:
- Education about death, dying and end-of-life care should be essential for people at the end of life, their families and health and social professionals.
- Increasing access to pain relief at the end of life should be a global priority, and suffering management should accompany life extension as a research and healthcare priority.
- Conversations and stories about everyday death, dying and grieving should be encouraged.
- Care networks must lead the support for people who die, care for and are grieving.
- Patients and their families should receive clear information about the uncertainties, as well as the possible benefits, risks and harms of interventions in potentially life-limiting diseases to allow more informed decisions.
- Governments should create and promote policies to support informal caregivers and bereavement or compassionate leave in all countries.
