On January 31, The Lancet published a "Lancet Death Value Significant Report."
The report shows that the current overemphasis on extending lives through aggressive treatment, the huge global inequalities in access to palliative care, and the high cost of end-of-life care are causing millions of people to suffer unnecessarily at the end of their lives.
Image source: The Lancet
The report calls for a rebalancing of public attitudes towards death and dying, moving away from narrow approaches to care and towards a compassionate community model in which communities and families work with health and social care services to provide care for the dying.
Dr Libby Sallnow, consultant palliative medicine and honorary senior clinical lecturer at St Christopher's Hospice and University College London (UCL), co-chair of the report, proposed:
"During the COVID-19 pandemic, many people end up dying after receiving medical measures. With the exception of healthcare workers wearing protective masks in hospitals and intensive care units, patients are often left alone and can only communicate with their families digitally rather than face-to-face.
Over the past 60 years, the way people die has changed dramatically, from occasional family incidents with medical support to medical incidents with limited family support. We need to fundamentally rethink how we care for the dying, our expectations of death, and the social changes needed to rebalance our relationship with death."
The report focuses on the period from when an individual is diagnosed with a life-limit illness or injury to his or her death, and when relatives suffer bereavement that affect their lives. This does not include sudden or violent death, child or unjust death.
Death and dying have become overly medical, with often avoidance and fear
Over the past 60 years, the end of life has shifted from a family and community setting to a major concern for health systems. In the UK, for example, only one in five people in need of hospice care is at home, while about half are in hospitals.
Global life expectancy has steadily risen from 66.8 years in 2000 to 73.4 years in 2019. However, as human lifespans continue, the amount of poor health is gradually increasing, and the number of years lost in healthy life expectancy increases from 8.6 years in 2000 to 10 years in 2019.
Prior to the 1950s, the cause of death was primarily acute illness or injury, rarely involving a doctor or technique. Today, most causes of death are chronic diseases, and doctors and medical technology are more involved. Advances in science and technology have further fueled the idea that death can be defeated and accelerated over-reliance on medical interventions at the end of life.
And, as health care becomes the focus of attention, family and community care is increasingly marginalized. The language, knowledge and confidence to support and manage end-of-life are slowly being lost, further exacerbating dependence on health systems.
Nevertheless, it can be difficult, uncomfortable, and often occurs in emergency situations, rather than as the professional responsibility of a doctor and the rights of all individuals and families who wish to engage in such a conversation. Often, such a conversation may not happen at all.
"We will die. Death is not just, and has not been, a medical event. Death is always a social, physical, psychological and spiritual event. When we understand death in this way, we will be more serious about every actor in this big drama." Mpho Tutu van Furth, co-author of the major report and pastor of Amstelveen in the Netherlands, added.
Globally, too many patients die in pain
While palliative care has received attention as a profession, more than half of all deaths occur without palliative care or pain relief, and health and social inequalities persist along the way.
Interventions usually last into the last few days of life with minimal attention to pain. Medical culture, fear of litigation and economic incentives have also led to overtreatment at the end of life, further increasing the number of deaths in institutions and deepening the perception that professionals must manage deaths.
Unmitted pain, great inequality and bold treatment have come at a high price. In high-income countries, the proportion of treatment spent on patients who die out of total annual spending is too high, suggesting that the threshold for end-of-life treatment is much higher than for other treatments.
In high-income countries, 8% to 11.2% of annual health expenditure of the entire population is spent on less than 1% of the current year's deaths. Care in the last month of life is expensive and, in countries where universal health coverage has not been achieved, can impoverish the affected family.
"Dying time is also a part of life, but it is often overlooked. Anxiety about death and dying seems to have increased. The current system exacerbates under-treatment and over-treatment at the end of life, ignores patient dignity, increases patient suffering, and leads to improper use of resources.
Currently, death is determined by health care services. We need to fundamentally rebalance our social rebalancing to reshape our relationship with death." Dr Richard Smith, co-chair of the report, said.
There is a need to fundamentally change the care that society gives to the dying
The report sets out five principles for a new vision of death and dying:
The social determinants of death, dying and grief must be addressed in order to enable people to live healthier lives and experience the dying process and death more equally.
Death must be seen as a relationship and mental process, not just a physical event, which means that relationships based on connection and compassion should be prioritized and made central to the care and support of the dying or emotionally sad person.
Networks designed to provide care for the dying, needy, and emotionally grieving should include family members, members of the wider community, and professionals.
Dialogue and stories about everyday deaths, dying and grief must be encouraged to foster broader public dialogue, debate and action.
Death should be recognized as valuable. "If there is no death, every birth will be a tragedy." （Without death, every birth would be a tragedy.）
The report suggests that society is undergoing small changes – from community-based patterns of action that discuss death, changes in national policies to support bereavement, or hospitals working with families.
Of course, sweeping change will take time, the report takes Kerala, India, as an example, where death and dying have been seen as a social issue and responsibility over the past 30 years through a broad social movement of tens of thousands of volunteers, complemented by political, legal and health system changes.
"When caring for the dying, there's a real need to inject meaning into the rest of your life, including gaining physical comfort, accepting yourself and making peace with yourself, getting a lot of hugs, repairing broken relationships and building new ones. Now is the time to give and receive love with dignity.
Respectful palliative care helps to achieve this. But this can only be achieved through a broad sense of community and action to change the status quo." Co-author Dr M.R. Rajagopal from Pallium, India, said.
To achieve the broad range of changes needed, the report provides key recommendations for policymakers, health and social care systems, civil society organizations and communities, including:
- Education on death, end-of-life and end-of-life care is essential for the dying, their families and health and social health professionals.
Increasing access to end-of-life pain relief should be a global priority, and the management of pain as it results should be a research and health care priority alongside life extension.
- Dialogue and stories about everyday death, dying and grief should be encouraged.
- Care networks must channel support for the dying, caring, and grieving.
Clear information about the uncertainties and potential benefits, risks and harms of interventions for potentially life-limiting diseases should be provided to patients and their families in a timely manner so that they can make more informed choices.
- Governments should develop and promote policies to support informal caregivers in countries and to enjoy paid caregiving or bereavement leave.
Curated: Ground cat
Executive Producer: Gyouza
Source: The Lancet