Death must be recognised as having value. “Without death, every birth would be a tragedy.”

Many people have died the ultimate medicalization death as a result of the COVID-19 pandemic, often alone but for masked workers in hospitals and intensive care units, unable to interact with their relatives except digitally, according to Dr. Libby Sallnow, palliative medicine consultant and honorary senior clinical lecturer at St Christopher’s Hospice and UCL (UK) and 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,” says Dr. Sallnow.

Around the world, health and social systems are failing to provide adequate, compassionate care to dying people and their families.

According to a new Lancet Commission, today’s overemphasis on aggressive treatments to extend life, massive global imbalances in palliative care access, and expensive end-of-life medical costs have caused millions of people to suffer unnecessarily.

The Commission asks for a shift in public perceptions of death and dying away from a narrow, medicalized approach and toward a compassionate community model, in which communities and families collaborate with health and social care organizations to care for individuals who are dying.

The Commission examined how societies around the world perceive death and care for those dying, making recommendations to policymakers, governments, civil society, and health and social care institutions.

The Commission’s focus is on the time between a person’s diagnosis of a life-limiting illness or injury and their death, as well as the grief that affects those left behind; it excludes sudden or violent deaths, deaths of minors, and deaths due to injustice.

Death and dying have become over-medicalized, relegated to the background, and feared.

Over the last 60 years, dying has shifted from being primarily a family and community matter to being predominantly a healthcare one. In the United Kingdom, for example, just one in every five patients who need end-of-life care is at home, while the other half is in a hospital.

From 66.8 years in 2000 to 73.4 years in 2019, global life expectancy has continuously increased. However, as people live longer, they are spending more of those extra years in poor health, with years lived with disability rising from 8.6 in 2000 to 10 in 2019.

Prior to the 1950s, most deaths were caused by acute illness or injury, with little or no involvement from doctors or technology. Today, chronic disease is the leading cause of death, with doctors and technology playing a significant role. Advances in science and technology have also hastened the over-reliance on medical interventions near the end of life, fueling the illusion that death can be vanquished.

Families and communities have been increasingly estranged as healthcare has taken center stage. The vocabulary, expertise, and confidence needed to support and manage death have all but vanished, increasing reliance on health-care systems. Despite this, rather than being considered as a doctor’s professional responsibility and a right for all people and families who desire it, discussions about death and dying can be unpleasant and painful, and they occur much too often during times of crisis. Often, they never happen at all.

“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,” adds Commission co-author, Mpho Tutu van Furth, priest, Amstelveen, Netherlands.

Too many people are dying in terrible ways all across the world.

Despite the fact that palliative care is becoming more well-known as a speciality, more than half of all deaths occur without palliative care or pain management, and health and social inequities persist even after death.

Interventions are frequently carried out until the very final days, with little regard for suffering. Overtreatment at the end of life is further fueled by medical culture, fear of litigation, and financial incentives, further fueling institutional deaths and the belief that experts must control death.

The suffering that goes untreated, massive inequities, and aggressive medical treatments have all come at a terrible price. Treatment for individuals who die accounts for a disproportionate amount of overall annual expenditure in high-income countries, implying that treatments towards the end of life are delivered at a significantly higher threshold than other treatments.

In high-income countries, between 8 percent and 11.2 percent of yearly health spending is spent on the less than 1 percent of the population who die that year. Care in the final month of life is expensive, and in countries without universal health coverage, it can be a source of poverty for families.

“Dying is part of life, but has become invisible, and anxiety about death and dying appears to have increased. Our current systems have increased both undertreatment and overtreatment at the end of life, reduced dignity, increased suffering and enabled a poor use of resources. Healthcare services have become the custodians of death, and a fundamental rebalance in society is needed to re-imagine our relationship with death,” adds Dr. Richard Smith, co-Chair of the Commission.

A major shift in society’s attitude toward the dying is required.

The Commission outlines five guiding principles for a new approach to death and dying:

1. The social determinants of death, dying and grieving must be tackled, to enable people to lead healthier lives and die more equitable deaths.
2. Dying must be understood to be a relational and spiritual process rather than simply a physiological event, meaning that relationships based on connection and compassion are prioritised and made central to the care and support of people dying or grieving.
3. Networks of care for people dying, caring, and grieving must include families, wider community members alongside professionals.
4. Conversations and stories about everyday death, dying, and grief must be encouraged to facilitate wider public conversations, debate, and actions.
5. Death must be recognised as having value. “Without death, every birth would be a tragedy.”

Small adjustments are being made, according to the Commission, such as community action models to discuss death, national policy reforms to encourage grieving, and hospitals collaborating with families. While large-scale change will take time, the Commission cites Kerala, India, as an example of how death and dying have been reclaimed as a social concern and responsibility over the past three decades thanks to a broad social movement involving tens of thousands of volunteers and changes to political, legal, and health systems.

“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. Respectful palliative care facilitates this. But it can be achieved only with broad-based community awareness and action to change the status quo,” according to co-author Dr. M.R. Rajagopal, Pallium India, India.

The Commission makes significant suggestions for policymakers, health and social care systems, civil society, and communities in order to achieve the widespread changes required, including:

– 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.

Source: 10.1016/S0140-67362102314-X

Image Credit: Getty

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