“The story of dying in the 21st century is a story of paradox.” This is the opening line of a report recently published in The Lancet, in which the Lancet Commission experts tackle what is, for many, a very sensitive topic: the end of life. The recommendations they present aim at “bringing death back into life.”
What makes the story a paradox is that in end-of-life situations, many people are overtreated, and on the other hand, many people are undertreated.
In short, when all is said and done, “people die bad deaths.” A natural event, a natural part of life, has turned into something that people fear or, in some cases, refuse to even acknowledge or talk about.
This was the motivating factor for the Lancet Commission, a group of experts from various disciplines, to come together to try to better understand this complex concept. They call on the general public, healthcare professionals, and policymakers to change the approach to end-of-life matters so that there can be a balance between death and dying, as well as a balance between life and death.
This sensitive topic was explored by Marina Sozzi, PhD. She is the director of the Association for the Support and Assistance of People With Chronic and Oncological Diseases (SAMCO), a nonprofit organization that for more than 30 years has been dedicated to “providing palliative care and supporting individuals with oncological or other chronic and degenerative diseases.”
Call for Rebalancing
To give people an idea of a better system in which life and death are in balance, the Lancet Commission experts describe a realistic utopia, which they summarize in the following five principles:
The social determinants of death, dying, and grieving are confronted.
Dying is understood to be a relational and spiritual process rather than simply a physiologic event.
Networks of care provide support for people who are dying, those caring for them, and those grieving.
Conversations and stories about everyday death, dying, and grief become common.
Death is recognized as having value.
Achieving this utopia will not be easy, especially considering the current systems that are in place. “There have been tremendous medical advances over the last hundred years, particularly in increasing life expectancy and curing diseases that were once considered death sentences,” Sozzi explained. “Indeed, over the course of that time period, medical science acquired an enormous degree of social power, and matters of death — which in previous centuries had been within the purview of religions and houses of worship — were handed over to be handled by doctors and nurses,” she continued.
The COVID-19 pandemic has made the medical field’s role in matters of death more prominent: every day, people saw footage of dying people in hospital beds being cared for by healthcare professionals in masks and gowns. These patients were otherwise alone, their only contact with loved ones being over the phone or online. They died the ultimate medicalized deaths, stripped of almost all opportunities to get emotional support from family and friends.
New Perspective Needed
The Lancet Commission experts are certain about one point: the need to move away from the reductionist approach to death in order to integrate a more holistic approach, one that takes into account all of the dimensions of death without limiting itself only to the medical aspects.
“Medicine has its own take on the death phenomenon and on disease, which is a reductionist take,” said Sozzi, noting that thanks to processes that make it possible to reduce phenomena to the measurable, medicine has managed to make tremendous progress. The same approach has been applied to the view of death, which has by and large become a biologic event.
“The problem is that, in reality, death is a much more complex phenomenon: cultural, social, involving families and society,” she explained. “Not all of these aspects are taken into consideration by medicine, and therefore, our culture has diminished its view of the death phenomenon.” Sozzi pointed out that if looked upon more closely, the very question, “What did the person die of?” presupposes, in a certain sense, that it might have been possible to prevent that death — if only medicine had had the right technology. So, death comes to be seen as something that could have been avoided.
Power of Palliative Care
Changing the approach to death requires a profound culture shift and, therefore, a lot of time. The good news is that although there is still a long way to go, a few steps have been taken in this direction. “Talking about death, and even organizing courses aimed at healthcare professionals, is definitely easier these days than it was even just 10 years ago,” said Sozzi, citing, as an example, a project she developed for training nursing home operators in palliative care.
It is in palliative care where the greatest progress has been made in end-of-life matters. “The culture of palliative care allows us to think about death in very different terms and to recognize that moment when we should stop looking at curative care and direct our efforts at ‘comfort care.’ And this care of the dying has to be holistic,” Sozzi explained. She adds that we are increasingly talking about simultaneous palliative care — care that is not limited to the final days of a person’s life but that rather starts early on, when active treatments are still in place.
Sozzi mentioned Italy’s Law 38, which took effect in 2010. It regulates access to palliative care and pain management, expanding the right to receive these treatments to patients “in any healthcare setting, at any stage of life, and for any chronic or progressive condition which has no treatment or has a treatment that is not sufficient to stabilize it.”
A culture shift is also needed in this area; there has already been a movement away from general practitioners to healthcare professionals who can and must direct a patient to palliative care.
“We need to provide these doctors with more training and make them more aware of what a difference this kind of care can make throughout a patient’s life, not only during the final stages,” said Sozzi. Concerning training, she mentioned that Italy had recently introduced a specialization in palliative care for medical school graduates. This is another small step and one that adds a sense of dignity to this new approach to life and to death.
The Experts’ Recommendations
In attempting to find a balance between life and death, we must not look at the period prior to the 1900s as some kind of golden age. Sozzi explained that back then, there was almost none of the medical technology now available to treat people at the end of life. “Palliative care has also set forth original technical aspects for eliminating pain. Without having eliminated a patient’s pain, I can hardly begin a discussion with them about spiritual aspects,” she said, emphasizing the importance of always contextualizing approaches to death.
The Lancet Commission experts assessed the approach to death in many different contexts. They recommend that to best handle end-of-life matters in all their complexity, one should keep in mind the importance of relationships and networks across society.
They recommend that healthcare and social care professionals improve their skills and their capacity for taking care of dying patients and their families. When the patient has a life-limiting illness, a caring and compassionate approach should be taken when providing clear information about all interventions involved in palliative care, as well as when having conversations about death.
Governments and policymakers are advised to implement actions to allow all citizens to have the same access to necessary palliative care. In addition, all strategies and reports on social care and well-being more broadly should always include consideration of death, dying, and grieving.
It’s an uphill climb, but one that must be made if we’re to build a new culture aimed at bringing death back into life. “As we continue stepping toward this new culture, let us each put a stone in place,” Sozzi concluded.
Lancet. Report of the Lancet Commission on the Value of Death: Bringing Death Back Into Life. Published online January 31, 2022. Full text