Gordon Rubenfeld is an intensive-care physician at Sunnybrook Health Sciences Center and Professor of Medicine in the Interdepartmental Division of Critical Care Medicine, University of Toronto.
Let’s say that an 80-year-old woman who gets along reasonably well at home with some help from a visiting care worker gets sick with pneumonia. She is admitted to the hospital and things get worse. My intensive-care team is called, and we provide additional oxygen, but her breathing worsens as her lungs fill with pus and fluid.
At this point, we have two choices: We can put her on life support, which means inserting a breathing tube through the mouth into the lungs and delivering more oxygen with a ventilator, or we make a decision to continue all other treatments but without a ventilator. The breathing tube may mean a better chance of survival, but it also means she will not be able to talk while it is in and, even with medication, it is painful. If she requires many days of ventilator support, she is facing a prolonged and rocky recovery with an inevitable loss of independence and function.
I have conversations about these kinds of decisions every single week as an intensive-care physician. Pneumonia is common and, even with modern treatment, has always been particularly lethal in the elderly and compromised. Ideally, this is an intensely personal decision that my patient would make with me. The reality is that once blood oxygen is dropping during a severe infection, patients have neither the mental clarity nor time for this important discussion. In these critical situations, the legal and ethical responsibility falls on their relatives.
So, I ask them: “Did you ever have a conversation with your mom about being on life support? What is more important to your grandfather, living longer or living better?”
The answers are almost always the same. “We never talked about it, who does? All I know is that my granddad was a fighter. My mom wouldn’t want me to give up on her.” And so we end up intubating and deploying life support, even when the prognosis is dismal.
But when I have the opportunity to talk with older patients or those with severe chronic illnesses while they are healthy, those who insist on having everything done to let them live a little longer even if it means dying uncomfortably on life support, unable to communicate, represent the minority. Most say they are not afraid of dying – they are afraid of pain, disability and loss of dignity. They do not want to be a burden. They want to return to living independently. But I do not have any of that information when I – or more crucially, they – need it. Because you never asked.
This describes a typical week for me, but the coming weeks of COVID-19 infections are projected to be anything but typical for my colleagues in critical care. The current models of spread and severity include the possibility that demand for life support will exceed the supply in Canada; this almost certainly is occurring in China and Italy. In one report from China, 90 per cent of patients who died with COVID-19 died without even a trial of a ventilator. This means I may be faced with choices that, in my 20 years of clinical practice, I have never had to make. Do I use the last ventilator for the frail 80-year-old grandmother who has a small chance of surviving the coronavirus or the 35-year-old mother who has a much higher chance? These will be devastating decisions for all involved, including my colleagues.
Now, imagine that last ventilator is used on a patient who did not really want it or did not want it for long. If her loved ones had taken the time to ask, I would have the information I need to make the best decisions when it matters most.
These conversations are not easy ones. But many resources are available to help you, including Advance Care Planning in Canada’s Speak Up initiative and informational videos from Hospice Palliative Care Ontario and the Conversation Project, which also has starter kits you can download and fill out with your loved ones.
These are tense and uncertain times, and we are all looking for ways to prepare for what is likely to be a different world, at least temporarily. But this is a discussion you should have anyway, and so the coronavirus represents an opportunity to speak to your parents, grandparents, aunts, uncles and loved ones with chronic illnesses about life support. Because if you do not talk with them about this now, you may have to have a much more difficult conversation with me later.
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