The Lancet report: How death and dying is a ‘story of paradox’ in 21st Century

“While many people are ‘overtreated’ in hospitals with families and communities relegated to the margins, still more remain undertreated, dying of preventable conditions and without access to basic pain relief.”

The latest report of the Lancet Commission, “Value of Death: Bringing death back into life”, finds that death and dying is, in fact, a “story of paradox” in the 21st century. This report works as a guide for our current understanding of death as an individual and what it means for our healthcare professionals, academicians and governments.

The Lancet report limits itself to the scenario of death “when a person develops a life-limiting illness or injury through their death and into the bereavement affecting the lives of those left behind”.

Those who worked upon the report included health and social care professionals, social scientists, health scientists, economists, philosophers, political scientists, patients, carers, religious leaders, activists, community workers, and a novelist.

Over-medicalisation of death

The report states that the death of an individual is not an exclusively family matter now. It has moved from home settings to health systems, i.e. ICUs, hospitals, hospices. Terminally ill people are taken away to these medical facilities. The roles of their families and communities in the decisions making about their lives have receded.

The report calls it over-medicalisation of death, where people are often dying alone and unable to communicate with their family members except electronically. This has been a familiar phenomenon during the COVID-19 pandemic.

The report also recorded the personal experiences of those who shaped this report. It mentions an incident of the life of Dr MR Rajagopal, who is chairman of Pallium India, the NGO that provides palliative care to the people of Kerala. The report mentions that most children would have seen a dead body two generations ago. People may now be in their 40s or 50s without ever seeing a dead person. “The language, knowledge, and confidence to support and manage dying are being lost, further fuelling a dependence on healthcare services.”

Trials of Immortality and Control

According to the report, this is our delusion that we are in control of dying. “Large sums are being invested to dramatically extend life, even achieve immortality, for a small minority in a world that struggles to support its current population. Health care and individuals appear to struggle to accept the inevitability of death.”

Rebalancing the Death Systems

The Lancet report advocates the rebalancing of the death systems of our society. These systems are “many interrelated social, cultural, economic, religious, and political factors that determine how death, dying, and bereavement are understood, experienced, and managed. Income, education, gender, race, ethnicity, sexual orientation, and other factors influence how much people suffer in death systems and the capacity they possess to change them”.

According to the report, a death system should be the portal of knowledge by which death and dying are understood, regulated, and managed. The report provided an illustrative map that centres around two key events — impending death (based on knowledge of death) and death itself. The map goes beyond physiology to function and health capabilities, including well-being and the capacity to achieve. It further adds that a perfect map of a whole death system would include much more, such as the systems for preventing death and funeral customs.

The report indicates that these death systems are run and controlled by power, thus have been a source of discrimination and inequity in death. Experience of death and dying has become a result of a constellation of factors such as political unrest or conflict, access to and trust in healthcare services, relationships, discrimination or oppression, poverty, education, and many others. The report also provides examples of when power was used in Covid-19 scenarios.

Death Positivity is Good

The report welcomed the death positivity movements for death awareness around the world. These movements are taking shape in the form of death cafes, festivals, or campaigns and the publication of books. It says, “Evidence suggests that talking collectively about these issues can lead to an improvement in people’s attitudes and capabilities for dealing with death.”

A Good Death

The report also mulled over the question of what is a good death. It concluded that a good death is when it fulfils 11 conditions. These conditions are “relief from physical pain and other physical symptoms; effective communication and relationship with healthcare providers; the performance of cultural, religious, or other spiritual rituals; relief from emotional distress or other forms of psychological suffering; autonomy with regards to treatment-related decision-making; dying in the preferred place; life not being prolonged unnecessarily…”

Assisted Dying

The report also raises societal and policy questions regarding assisted dying. “What are the societal costs of legalising and not legalising? Does legalising assisted dying increase or decrease suicide rates? Does not legalising encourage underground practices (as with illegal abortions)? Is trust in doctors affected? What safeguarding measures are needed? What are the economic costs and benefits? Does legalising assisted dying undermine palliative care? Should those undergoing assisted dying be allowed to donate organs?”

It stresses that without asking these questions, assisted dying legislation cannot guarantee human rights in death.

Overtreatment

The report also touched on the question of overtreatment and its relation to the economics of a death system. According to experts, people extend the treatments without assessing their outcomes. “Doctors are also biased in their assessment of the benefits of treatment for patients with life-limiting conditions.”

And that is why the expenditure on treatment of a person facing terminal illnesses increases manifold during the final days. According to experts, “Many new treatments do extend life only marginally and have low success rates — and yet are very expensive.”

Palliative Care

Experts involved in making this extensive report found that palliative care is accessible only for 14 percent of people worldwide. They recommend that palliative care services be available universally to all at the end of life. Ideally, these services should be part of statutory or public health services, which is not the case now.

Kerala case as ‘Realistic Utopia’

In their assessment of death and dying systems around the globe, the Lancet report recognised that end of life services being provided in Kerala is the system closest to their “realistic utopia”.

“Kerala has emerged as a symbol of hope for low cost, equitable, and participatory palliative care, including end-of-life care. The success of this model rests on a series of paradigm shifts relating to how illness, dying, caring, and grieving are viewed within the state.”

The report lauded the case of Pallium India, an NGO formed in 1993 intending to manage the pain and other symptoms of people with serious illnesses. Through this, death and dying have been reclaimed as a social concern and responsibility through a broad social movement composed of tens of thousands of volunteers complemented by changes to political, legal, and health systems.

‘Vision of Death and Dying’

The report proposes five principles of a ‘Vision of Death and Dying’. According to the experts, these principles are: The social determinants of death, dying, and grieving are tackled; dying is understood to be a relational and spiritual process rather than simply a physiological event; networks of care lead support for people dying, caring, and grieving; conversations and stories about everyday death, dying, and grief become common.

Finally, the report recommends that death and dying must be recognised as normal and valuable. Care of the dying and grieving must be rebalanced. The Lancet plans a diverse programme of events in this year aiming to embed its recommendations globally “and to see the realistic utopia take shape in practice”.