How should we handle death?

Much of the world’s resources, efforts and expertise of the past century have been put into avoiding death. But a multidisciplinary team of researchers is asking if this is the best approach – whether, instead of “overmedicalising” death, societies should prioritise a reduction in suffering.

The Lancet Commission on the Value of Death is an interdisciplinary team of experts in healthcare, economics, philosophy, theology and community work, alongside community activists. In a report published today, the Commission has called for a worldwide change of attitudes towards death.

“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 report opens.

This has been exacerbated by COVID-19. “People have died the ultimate medicalised deaths, often alone but for masked staff in hospitals and intensive care units, unable to communicate with family except electronically,” the report reads.

The researchers outline five principles to improve the value and process of death:

1. Death, dying and grieving must be made more equitable: all people should be able to lead healthier lives and die more comfortable deaths.
2. The relational and spiritual process of death must be recognised in addition to the medical event, to allow for better care.
3. Families and wider community members should be more heavily involved in caring for the dying, alongside professionals.
4. Public conversations and debate about death and grief should be encouraged.
5. Death should be recognised as having value.

To achieve these principles, the researchers believe there should be clear education on death, palliative care, and interventions for people at the end of life, their families, and professionals.

They also advocate for increased access to pain relief around the world, more public conversations on death, empowerment of networks of care, and government support for informal carers through payments and provision of compassionate leave.

The report highlights parts of the world that have more effectively pursued some of these targets – such as Kerala, in India, which has benefited from a community-based palliative care model over the past three decades.

“Death is a part of life, and [it] gives meaning and shape to the experience of living,” says Professor Jennifer Tieman, a researcher in palliative and supportive services at Flinders University, who was not involved in production of the report.

“It is clear that medicine and public health initiatives have extended our individual and collective lifespans, but there are implications and associations for such a rapid and profound set of changes.”

Tieman says that the report “is a narrative reminding us that death is not owned by medicine but is a dynamic system of people, types of knowledge, history, beliefs and attitudes, as well as systems and processes. The system is not static but shaped by all the elements in the system and by disruptions external to the system, such as COVID.”

Dr Kasia Bail, an associate professor in nursing at the University of Canberra, says that the report’s recommendations on relational care are “very idealistic rather than pragmatic”, because of the way care is funded.

“Investment in care is the social and financial challenge, whether dying care or otherwise,” says Bail.

“Aged care investment and valuing care workers is really indicative of our cultural tolerance for this – we tolerate really low pay, even if we say they do important work.”

A paradigm shift is required in funding, as well as in attitudes towards care and death.

“Relational care is a beautiful concept,” says Bail. “But the compaction of care into small episodes funded on interventions and procedures is completely in contrast to this.”

Tieman says that the Australian attitude to death reflects that of many other developed countries.

“In Australia, there is a growing understanding of the need for death literacy; the importance of inclusion, equity and access; the role of the family and community that wraps around the person at the end of life; and the ability to hold essential conversations,” says Tieman.

She cites an open online course she’s involved in as an example of this.

Read more: Talking about death and dying

Bail points out that in Australia, despite efforts to the contrary, access to palliative care is linked to wealth, race, illness and location.

“Health professionals are often well able to support patients if they are on the standard factory line of treatment, but have difficulty following patient preferences if they are outside the ‘norm’ or ‘guidelines’ associated with active treatment,” says Bail.

“Palliative and supportive care clinicians are really skilled at navigating the space in between, but are often included too late, and are under-resourced to be able to meet the volume of need for earlier conversations.”

“The Commission report reminds us that without a realignment, we will miss the opportunity to see death as our last human experience,” says Tieman.

“A lack of familiarity with death and dying can mean we unintentionally exclude those who are dying, caring and grieving because we do not acknowledge them and facilitate their participation in the workplace, in our community and in society.”