Amit Arya is a palliative care physician working in Brampton, Ont. and Naheed Dosani is a palliative care physician working in Toronto, Ont.
As palliative care doctors, we regularly care for patients with life-limiting illnesses such as cancer, kidney failure or dementia. Our work includes having conversations with our patients about what matters most to them as they approach end of life, and providing them with the clinical care they need to ease their final weeks and days.
But even for us, this pandemic feels different. Like you, we are worried about our families, friends, communities and colleagues. We are terrified that decisions that should be made on the basis of medical advice and personal values could instead be determined by shortages of equipment such as ventilators. And we worry that the many Canadians who tragically will not survive this pandemic may not get the care they need to ease their passing.
Coronavirus looks very different than the diseases that typically afflict those we care for. It kills the elderly, frail and those with previous illnesses. But it also kills people who were in robust health. One cruel feature of this disease is that patients often suffer a precipitous plunge in their condition. Another is that the demands of quarantine mean that when COVID-19 patients do die, they generally die alone away from family and loved ones, a sad circumstance likely to take a toll also on those they leave behind.
Yet another difference is where these patients die. In some jurisdictions, hospices and long-term medical facilities have, for understandable reasons, closed their doors to COVID-19 patients. Too many Canadians die in acute care hospitals as it is. But that will be the reality for many people in this pandemic. Many others will die in places not well-equipped to address either the medical, emotional, psychological and spiritual needs of the dying and those close to them. Some people will die in nursing homes—over 600 of which have already encountered the virus as we write. Others will die in prison. And many will die in their own homes at a time when palliative home care is already overstretched and the personal protective equipment (PPE) we are hearing so much about is being rationed mainly to help those on the frontline in acute care hospitals.
To be direct: dying of COVID-19 without the support of good palliative care means a desperate gasping for air—an anguishing end. The disease principally attacks the airways and the lungs, meaning patients are left to suffocate, while agitated and delirious. Medical assistance in dying (MAiD) is not an option for these patients because there isn’t time.
Let’s talk about ventilators. There is an understandable anxiety in the health care system that we do not have enough. Because we have no proven treatments for COVID-19, our best bet for our sickest patients may be to use a ventilator to push oxygen through a tube directly into their lungs. This keep them alive long enough for their own immune system to overcome the disease. But the use of a ventilator is a very aggressive form of treatment that requires the patient to be deeply sedated. And outcomes are often poor. Many patients who are put on a ventilator do not survive. Some who survive will never return to their previous health.
With proper counselling and the promise of good palliative medical care to ease suffering and symptoms, patients such as the frail elderly or those with serious complicating disease, who have poorer prospects on ventilators, might well choose not to face the rigours of the ICU. In other words, they might choose to die in peace.
More worrisome is that when health systems are overwhelmed, the sickest patients may not be offered a choice. With more very sick patients than there are ventilators, doctors will have to make agonizing choices about who gets one and who doesn’t. However this “triage” is done, some patients will have the decision made for them. We cannot abandon these people. We need to give them all the care that our science has to offer and give their loved ones the assurance that even if they are sealed away, they are receiving compassionate care.
So, how can we make sure that we do not allow any more suffering than is absolutely necessary during this pandemic? One widely used framework for large-scale critical care events talks about “stuff, staff, space, systems.”
What that means in the context of palliative care is providing health care workers with the medication to manage COVID-19 patients at the end of life: ensuring that those workers are trained in palliative techniques; allocating space in hospitals, homes, nursing homes and prisons for people to die in comfort, dignity and peace; and providing for the safety of all health workers by giving them protective equipment and enabling telemedicine.
Even at the best of times, Canada’s palliative care system is under-resourced. In this crisis there are particular challenges facing compassionate care at the end of life. One of the most distressing aspects of this disease is that it separates the dying from their loved ones. That makes it even more important that health care workers at the bedside of patients understand their medical—as well as their human—responsibilities.
Communication is more important than ever. In Quebec, the first death of someone suffering from COVID-19 was an elderly woman who, after consulting with her physician about the palliative care available to her, chose not to endure a ventilator which offered her very poor prospects.
Finally, we know that when health systems are overstressed, people who are already marginalized—whether it’s by poverty, homelessness, language, discrimination or historical trauma—are less likely to self-advocate and less likely to be heard when they do. One of the principles of palliative care is to counterbalance this unfairness.
Palliative care considers the whole person in the context of individual values and what matters most at each stage of illness. It is compassionate treatment that helps a person live with comfort and dignity, regardless of how much time they have left.
In this pandemic, we need to consider not just treatment for those we may be able to save, but also the suffering of those we cannot. Palliative care should not be seen as a luxury, but as a necessary part of the response to humanitarian crises. It will be up to those running the health system, including our governments, to provide the resources to make sure that happens. At this time of global crisis, palliative care can and will help address our collective suffering.