HUMANS 101

One year ago this week, my 85-year-old father knew he’d die soon. Swiftly advancing cancer had left his body failing rapidly. There was nothing left to do but take pain medication and wait. But he was among the lucky, in one respect, and so was his family. Dad’s brain remained perfectly intact, and he was able to do the waiting at home. He called all his kids, grandkids, and great-grandchildren in for a few final conversations packed with the advice of a lifetime.

Death for many, however, is a far more heartbreaking, solitary, even pointless event, an end among relative strangers, often drawn out by the false hope that medical science can defeat the inevitable with one last procedure or pill. The result, far too often, is a lonely, agonizing demise in an intensive care unit with little to no chance for loved ones to say goodbye in person.

Prior to the pandemic, 38% of Americans died in hospitals and 22% in long-term care facilities, according to a new report in The Lancet, a British medical journal. The figures are similar or higher in several other Western countries, including Canada and the U.K.

The pandemic has greatly increased these lonely passings, highlighting what the report’s commission of 27 experts calls “the ​​ultimate medicalized death,” an over-reliance on medical advances that goes against our social and personal instincts and values and, from a practical standpoint, generates huge medical bills at the end of life that can leave families financially decimated.

The commission does not deny nor downplay the incredible benefits of modern medicine, nor the vital lifesaving care provided by doctors and nurses for Covid-19 and other diseases. Rather, it points out a growing imbalance in how we view death in general and then ultimately how we — as families, communities, and society overall — face the inevitable when the time comes.

“Dying is part of life, but has become invisible, and anxiety about death and dying appears to have increased,” says Richard Smith, a retired doctor and co-chair of the commission. “Our current systems have increased both undertreatment and overtreatment at the end of life, reduced dignity, increased suffering and enabled a poor use of resources. Healthcare services have become the custodians of death, and a fundamental rebalance in society is needed to reimagine our relationship with death.”

Death is different these days

The commission is composed of doctors, philosophers, theologians, economists, and experts in health care at the societal and community levels from countries around the world.

At the core of the problem as they see it: An aging population served by ever-advancing medical techniques that can extend lives beyond a point of diminishing returns to the patient, loved ones, and society. Or, in poorer countries or among the disadvantaged in wealthier countries, lack of access to health services that could improve life in its final stages.

Behind it all is one dramatic shift: Once upon a time, most deaths were relatively swift, owing to injury or acute disease, the report notes, whereas nowadays the majority of people die a slower death from chronic disease.

“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,” says Libby Sallnow, PhD, a lecturer at St. Christopher’s Hospice in the U.K. and co-chair of the commission.

“The COVID-19 pandemic has seen many people die the ultimate medicalized death, often alone but for masked staff in hospitals and intensive care units, unable to communicate with their families, except digitally,” Sallnow says in a statement. “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.”

Recognizing the value of death

What’s needed, the report concludes, is a comprehensive rethink of death and how society cares for the dying, based on these five principles:

The social determinants of death, dying and grieving must be tackled, to enable people to lead healthier lives and die more equitable deaths.

Dying must be understood to be a relational and spiritual process rather than simply a physiological event, meaning that relationships based on connection and compassion are prioritized and made central to the care and support of people dying or grieving.

Networks of care for people dying, caring, and grieving must include families, wider community members alongside professionals.

Conversations and stories about everyday death, dying, and grief must be encouraged to facilitate wider public conversations, debate, and actions.

Death must be recognised as having value. “Without death, every birth would be a tragedy.”

“Death is not only or, even, always a medical event,” says Mpho Tutu van Furth, a priest from The Netherlands and also a co-author of the report. “Death is always a social, physical, psychological and spiritual event and when we understand it as such we more rightly value each participant in the drama.”