My partner, Ian, is a pilot. Sometimes he has to get up very early, and one day this week I woke up with him and his alarm at 4:00AM.
While he got ready for work, I flipped through the news on my phone. When I found this story by Tom Blackwell, a health care reporter with the National Post, I lay in bed stunned, unable to fall asleep again.
Toronto hospital illegally imposed ‘do-not-resuscitate’ order against wishes of dying man’s family: medical board (Read)
I was not stunned to read that doctors deemed it inappropriate to offer resuscitation, intubation, and ICU-level care to an 88 year old man who had multiple significant medical problems, including recent bilateral leg amputation. The average patient over 85 has a ~4.5% chance of "good outcome" (leaving the hospital neurologically intact) after resuscitation and I expect this man's chance would have been much lower given the vascular implications of bilateral leg amputation (Good Outcome Following Attempted Resuscitation).
The story mentioned that the doctors unilaterally imposed the DNR order. To read that they switched from DNR to FULL CODE at the family's request is testament to the pressure they must have felt. When they switched it back, it sounds like they did not inform the patient's family of the change, which I think is unfair. However, refusing to provide medically futile care is something that doctors need to be able to do.
I am terrified of the precedent set by the decision of the Health Professions Appeal and Review Board.
Ian, tying his tie, was not surprised at my dismay. I told him I'd have to quit medicine if providing harmful and futile treatments became the law in my jurisdiction.
I can't do it. I just can't.
He looked at me, empathetically. He often tells me that if he took his work home, it would be a bad day for everyone. Plus, commercial aircraft are not allowed in our on-street parking area.
He knows my work is with me all the time. My heart aches far too often these days, as I wonder how long I can last in my job a large, big-city academic hospital where we face demands for unnecessary and sometimes harmful intervention regularly.
These discussions are usually different when undertaken in a rural setting. I've worked in Nunavut, where many people still hunt for the majority of their food, and patients and families seem to understand death. It is not that death is welcome, but there is an understanding that life on Earth will end. When a dying patient tells me their fear of losing dignity and of being in pain, I can reassure them, I can ease their physical pain and support them emotionally for their remaining time. I feel that I am needed as their doctor, and they trust me to help them in any way I can.
Lately, at the big city hospital, colleagues and I have been dealing with families that are adamant we provide what we consider futile and inappropriate care. This is medical care that physicians believe is not helpful and may even be harmful to a patient.
We all want to look after the patients as best we can. We want to be seen as good at our jobs and we want to be liked but above all, we want to do the right thing.
We talk about it at lunch. We wake up in the middle of the night worrying about it. I know this because I asked a colleague if I was the only one, and he told me that he had been up the previous night, worrying about what to do! The oath we swore tells us "Above all, do no harm" and yet we are constantly being asked to prolong suffering. It is distressing. How can we so flagrantly violate our ethical responsibilities?
Each person holds has varying definitions of "suffering." So, we talk about these cases, nurses give us their thoughts, and we get multiple physicians including specialists involved to bring new perspective. Sometimes there's an ethicist brought in to help. Most of the time, all the professionals agree.
However, no matter what we say, we cannot sway the family to see that their loved one is in pain. They will not allow us to let them go, and they are incredibly angry at us for suggesting we will not attempt to force-feed them or bring them back to life when their heart stops.
We wonder, is it uneducated families? No, many of those demanding the most aggressive interventions are health care providers themselves. In the story that kept me awake, the daughter is a nurse. In the Rasouli case, where physicians sought to withdraw futile care, the wife of the patient was a family physician in Iran.
Are they expecting miracles?
Is it that they feel entitled to have whatever they want? Do people regard healthcare as a concierge-style service where they can pick and choose whatever options they like?
Thank goodness the passengers don't come into the flight deck and try to tell me how to do my job! If they told me I should land the airplane even though conditions were unsafe, I'd say 'no way!'
I guess it's not that simple in medicine, as health care is a right and a public service. We do have a duty to help people, but sometimes we disagree on what that looks like.
We encourage patients to have some skepticism, to ask questions, and to take part in their health. They put their trust in us to choose the right treatment, to recognize when we need to consult a specialist, and to guide them through the tough times. But when it comes to death and dying, people get squeamish. The trust vanishes.
Many families are quite reasonable. They might have a hard time letting go, but gradually, they start to see that mom is really unwell and does not seem comfortable, and they let us do our best to care for her. It's the egregious cases that stick in my mind, the ones where I feel like I've been asked to hurt someone despite my protestations.
I'm not advocating for a return to paternalism. Tell us your goals, your values: what is important to you? Just as you trust a pilot to adapt the flight plan to bring you safely to your destination, trust that your healthcare providers will do their best to shepherd you through your illness.
Discussions usually involved patients with advanced age, multiple co-morbidities, and poor quality of life. Many of these patients do not have Advance Directives, and even if they do, their families do not have to respect their wishes and neither does the law.
The patients are often too unwell to speak for themselves and so it is the family that requests things like resuscitation (as opposed to DNR), artificial feeding (feeding tubes), or what we call "active medical management" which means 'usual treatment' (as opposed to comfort-focused care) in the context of someone who is dying.
Instead of facing what is a natural part of life with grace and dignity, some patients are not allowed this opportunity. They are instead medicalized, which in some cases means brutalized.
A patient who hasn't eaten for weeks is malnourished, yes. That is the progression of her dementia. She has lost the ability to swallow. Her family wants her "helped" by putting a nasogastric (NG) tube into her stomach. She's dying, and this may delay it, but it might also hasten it. Regardless of how long she lives, her last days will be uncomfortable, plagued with complications.
In the face of death, food and hope are highly seductive. But . . . I was left wondering: Does our need to feed our dying loved ones blind us to what’s really best for them? – Dr. Jessica Nutik Zitter, Food and the Dying Patient
Doctors are reluctant to participate in things that seem like torture. We swore an oath that we would not. We try our best to keep the patient's best interests in mind, but after we've fought and fought, sometimes we give in, tired out and afraid of being sued.
Samuel Beckett puts it best:
And when they cannot swallow any more someone rams a tube down their gullet, or up their rectum, and fills them full of vitaminized pap, so as not to be accused of murder.” – Samuel Beckett in “Malone Dies”
Two days after the first article, Mr Blackwell looked at the issue from another angle:
Doctors more reluctant to clash with families over end-of-life decisions in wake of Supreme Court ruling (Read)
He's right. We are starting to become crippled by fear. Those of us who aren't yet burnt out try our very best to protect the ethical standards we were trained to uphold. But, we all reach a point where we are tired of being screamed at, tired of seeing nurses driven to tears, and most of all, terrified that we will lose the opportunity to continue in the profession that we value so greatly.
We do what is asked even though we know it is wrong – a disgusting thought. I am young and not yet burned out, but I'm heading there fast because I cannot reconcile the idea of going to work every day and being asked to harm people. This angst makes it so much harder to enjoy all the wonderful moments and to remain humbled by the privilege to care for others.
I see the awe that Ian still has for flying, working as part of a team, taking charge of a metal can full of people who are flying home or somewhere interesting, hurtling through the sky thanks to some combination of physics and magic. Medicine can be that awe-inspiring too.
I don't want to quit. This "job" is so much more than that to me, but slowly the 'job' of being a doctor is ruining my love for medicine.