Message from Icon Oncology CEO on COVID-19
Nothing gets a group more heated than the topic of death and dying – or more precisely, what constitutes a good death. And when it’s a room full of oncology professionals: doctors; nurses; and social workers, the level of engagement with the topic is intense.
“We as a profession engage daily with what it means to die, and yet all too often we don’t know how to approach it,” says Professor David Cameron, from the Department of Family Medicine at the University of Pretoria. “There is a lot of fear – people don’t know how to do it – there is a huge amount of ignorance.”
Professor Cameron was leading a session at the ICON national conference this August which challenged delegates to reflect on their own attitudes to death and dying – and to listen respectfully to the points of view of others.
“The topic of death is as old as humanity,” says Professor Cameron. “There are books that have been written about the art of dying, but in the last 100 years we have lost this. We have medicalised dying – we have made it inaccessible.”
Cameron flashed an image of an old man imprisoned in an ICU bed – entirely isolated and surrounded only by technology – to illustrate his point. “Is this progress?” he asked.
As the session unfolded, it rapidly became clear why the topic: “Why is death so messy” was so appropriate. Delegates picked their way through a maze of questions around what constitutes human dignity and the right to life; how human rights intersect with informed consent; whether people deserve to be treated equally when they are unconscious or demented; and what makes for a good death. And it rapidly became clear that, in an era of modern medicine and technology, these issues are blurred at best.
“There are very few clear-cut answers, very few comforting platitudes in this messy place,” commented one delegate.
Cameron thinks that for this reason, it is a topic best approached through the eyes of philosophers, poets, and artists – which is why he shared the story of the painter Edvard Munch, whose personal tragedies, sicknesses, and failures fed his creative work. Munch lost his mother at the age of five to TB and his sister to the disease less than a decade later and was also plagued with anxiety and ill health for most of his own life. Death stalks his art and his paintings have the power to illuminate the topic and to force others to confront it too.
“My whole life has been spent walking by the side of a bottomless chasm, jumping from stone to stone. Sometimes I try to leave my narrow path and join the swirling mainstream of life, but I always find myself drawn inexorably back towards the chasm’s edge, and there I shall walk until the day I finally fall into the abyss,” Munch wrote shortly before he died.
ICON’s David Eedes comments that such reflections on death and dying are particularly pertinent in the oncology profession.
Dr Eedes is working on the guidelines for a Best Supportive Care Programme that is shortly to be rolled out to the ICON network and aims to provide a precedent for patients to choose to die at home and be supported by their medical schemes in this choice. It is an ambitious plan but one he believes is long overdue in the profession. “Modern medicine is primed to fix even that which is unfixable. We mortals fear debility and death. In an attempt to extend life at all costs, unnecessary suffering is inflicted and personal finances and healthcare budgets are being crippled.”
As Atul Gawande author of the best-selling book Being Mortal says: “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really, it is larger than that. It is to enable well-being.”
These sentiments are also powerfully echoed in the new book “When Breath Becomes Air”, which charts the life and death of Dr Paul Kalanithi, an up and coming neurosurgeon who discovered he had inoperable lung cancer at the age of 36.
The real question we face, Kalanithi writes, is not how long, but rather how, we will live – and the answer does not appear in any medical textbook. Like Professor Cameron, the quest to answer this question brings Kalanithi back to poetry and the great works of literature.
The power of both these book lies in their eloquent insistence that we are all confronting our mortality every day, whether we know it or not.
“When we confront death, we have an opportunity to reflect on our own attitudes and experience of it,” says Cameron. He urged delegates in his session to think “not like a health professional but as a human being” when dealing with their patients and their families.
And his parting challenge to the group was that having done that: “What one new thing you can do to the next dying patient that you meet.”
“Ultimately, our ability to be skilful in working with death and dying will depend on the extent to which we have confronted these issues within our self.”