Death has become “over medicalised” and the public should be encouraged to discuss dying and grief, experts have said.
According to a new Lancet commission, an overemphasis on aggressive treatments to prolong life, global inequities in palliative care access, and high end-of-life medical costs have led to millions of people suffering unnecessarily at the end of their life.
The authors also note that the pandemic has made death and dying more prominent in daily life, while health systems have been “overwhelmed” when trying to care for those dying.
People often died alone, with families unable to say goodbye to loved ones or grieve together, the commission said – the effects of which will “resonate for years to come”.
The researchers argue that many people, mainly in low- and middle-income countries, have no access to end-of-life care, and particularly to opioids, while those in high-income countries may be overtreated.
Attitudes towards death and dying should be “rebalanced”, the authors conclude, away from a medicalised approach towards a “compassionate community model”, where families work with health and social care services to care for those dying.
Defining a good death
The commission is concerned that trying to define a good death may deteriorate to a tick-box exercise, and said that people will have a different idea of what constitutes a good death just as they do a good life.
“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 commission said.
“This situation has further fuelled the fear of death, reinforcing the idea of health-care services as the custodian of death.”
In the UK, about 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. However, as people are living longer, they are living more of these additional years in poor health.
The experts said that more attention should be paid to the dying, their families and communities, as well as the social and cultural aspects of death.
‘Fundamental rethink’ on death
Dr Libby Sallnow, the co-chairman of the commission and a palliative medicine consultant at University College London, said: “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, made up of experts from across a range of fields, including health and social care and patient and community activists, analysed how societies around the world perceive death and care for people dying.
The commission sets out key recommendations for policymakers, health and social care systems, civil society, and communities.
Some of these include education on death, dying, and end-of-life care; increasing access to pain relief at the end of life must be a global priority; conversations and stories about everyday death, dying, and grief; and networks of care must lead support for people dying, caring, and grieving.
The commission also set out five principles of a new vision for death and dying, including that dying must be understood to be a “relational and spiritual process” rather than simply a physiological event.