I see a lot of people die in my emergency department and intensive care unit. To be honest, it usually doesn’t bother me. It’s not the deaths that keep me up at night; it’s the almost-deaths. The people who are horribly injured or critically sick and will never be the same again—but are not quite bad enough to die.
They’re usually young. Their circumstances are tragic, unexpected, and random. It gets under my skin because what happened to them could happen to me.
I’m 32. I’m healthy. And if it weren’t for my job as a physician, I would have thought about my own death as much as my friends have thought about theirs—which is to say, I wouldn’t have thought about it at all.
And that’s a problem.
When you can’t speak for yourself, doctors like me rely on a legislated hierarchy of “substitutes” to make decisions for you around quantity-of-life versus quality-of-life. Life support technologies like mechanical respirators, dialysis machines and intravenous nutrition have blurred the line between alive and dead; I can support vital organs for months or years even when no possibility for recovery exists.
Starting with your spouse, then parents or children, then siblings, the list works its way down a somewhat arbitrary ranking of relatives and ends at a government-appointed public guardian. Yep, a government bureaucrat could decide whether or not to pull the plug, which often is the default when families disagree.
When there is disagreement, it’s up to the courts to decide someone’s fate. Take the tragic circumstances of Shalom Ouanounou, 25, and Taquisha McKitty, 27. Both have been declared brain dead yet remain attached to mechanical ventilators in Toronto-area hospitals because of court injunctions sought by their families, who claim the two aren’t dead. These two cases serve as an extreme example of what can happen when grieving families are unable to accept the inevitable.
Now, lawyers are speaking out, begging millennials to think about their last days alive.
“I don’t think anyone wants a civil servant, however well-meaning, making those types of end of life decisions” Mark Handelman, a Toronto lawyer who specializes in health care law, told me. But only a quarter of people have taken steps to ensure their wishes are known, and only 7 percent have spoken to their doctor. “You don’t have a consequence as long as you stay healthy and that’s the problem; death is uncertain as to timing.”
Handelman says millennials need to speak to their families about their end-of-life wishes and assign substitute decision makers—or health care proxies, as some jurisdictions call them—through legal tools such as a written power of attorney, sometimes called a living will. “The worst possible scenario is if no one is prepared for it and if the person who is sick has not expressed any values or beliefs about how they would like to see their last days managed, it’s incredibly stressful on families and unfair to everyone who is still conscious.”
I see the grief and tension these considerations bring to the families of my patients many times each week. Families tell me they believe in miracles, or that the decision to pull the plug interferes with the will of a higher being. They often can’t grasp the facts of what is going on, agonizing in the process of coming to terms with death.
It’s heart-wrenching to watch, particularly when I know that those decisions become less difficult to make when families recall discussions about end of life care or can turn to documented wishes that describe what a person would want done in such dire circumstances.
But having those conversations are admittedly awkward. To help, websites like The Conversation Project walk you through the best way to bring up the end of your life with your parents, siblings, and friends. It provides videos, guides and other resources to help people work through the challenges of discussing the end of their life with those who matter most to them. The project, which coined the phrase “it’s always too soon, until it’s too late,” suggests everyone aged 18 and above choose a substitute decision maker.
Recalling a 24 year old who was in a coma after a motorcycle crash whose family infighting had to be settled in court, Handelman says the time is now for people in their twenties and thirties to put in writing who should speak for them when they’re on a ventilator.
While the lawyers and doctors of Ouanounou and McKitty duke it out, Handelman wonders if this chaos might have been avoided had there been conversations or records describing their personal wishes.
“Death is uncertain as to timing,” says Handelman. That’s lawyer-speak for “you could get hit by a bus tomorrow.”
And trust me, you could. If you end up comatose in my ICU with unclear wishes, it’s a shitshow. You don’t want a bureaucrat or a judge deciding your destiny.
“Get your legal paperwork in order,” Handelman says.
“No one lives forever.”
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