Dr. Shelly Dev is an intensive care physician and the director of resident education at the Sunnybrook Health Sciences Centre’s Department of Critical Care Medicine in Toronto.
Recently, I was caring for an elderly patient in our intensive care unit. She was dying. Her devoted and loving family was dealing with the very real pain of losing a mother and grandmother. Their affection for her was moving and beautiful.
But one of the well-meaning family members at her bedside tried to put the situation in terms he felt some other family members would understand, using a phrase that has become commonplace: “Basically, do we pull the plug or keep her going?”
That phrase, in this situation, was striking. I and the medical professionals I work with engage in conversations about end-of-life care, dying and suffering on a regular basis. And so we did again when The Globe and Mail reported on Taquisha Deseree McKitty, whose family is heading to Ontario’s highest court to allow her child to be kept on life support despite five physicians' insistence that she has lost brain function. Many of us in this field already know her story well, and I know Ms. McKitty and her family have endured great hardship, suffering and pain. The coverage of their heartbreak, too, has been laudably sensitive and respectful.
Unfortunately, however, stories like Ms. McKitty’s – ones about death, dying and conflict in health care – are too reliably wrapped in a narrative that’s based on suppositions about medicine and how the people who work in the medical field deploy it. In Ms. McKitty’s father’s own words: “The medical world always goes toward science, and they start taking away the humanity part of it – life, the family.”
To read that is devastating.
Compassion and respect for Ms. McKitty and her family is paramount in this case, and everything else is, of course, secondary. But as a society that takes pride in our ability to access quality health care for human beings in need, we have been remiss in not also expressing compassion for the human beings who provide this care.
It is, after all, a rewarding, challenging and stimulating profession – but it can also be very, very painful. It can be especially tormenting when there are conflicting views on what is best for the patient. After taking an oath to first do no harm, the prospect of providing care that is causing more suffering than benefit to your patient is as critical as a professional crisis can be.
If we fail to consider medical professionals' narratives in stories like Ms. McKitty’s, we render the earnest dedication, profound kindness and difficult interactions of all those workers – doctors, nurses, respiratory therapists, dietitians, pharmacists, physiotherapists, social workers, chaplains – invisible.
Even though health care workers are, by and large, deeply decent people who have dedicated their lives to helping others in need, such sentiment will likely never be explicitly stated in narratives around issues as contentious and high-stakes as end-of-life care or neurological death. There is little consideration for those whose jobs are to be vigilant, present and supportive as patients and their families go through the worst nightmare of their lives. None of that is easy, or routine, or strictly scientific; it’s never dismissed as the travails of just another day.
Instead, we find ourselves drawn to the stories of the marginal few whose reckless and salacious behaviours are a far more enticing tale to hear – but in doing so, we cruelly recast the reality of who medical professionals are and how complicated death and dying really is.
As a result, no one considers entering medicine by imagining all the suffering and loss that lies ahead. The vast majority of folks who choose this path, often at a very young age, do so in the hopes of making things better. They are good people motivated by the desire to do good things for others. And when good things don’t happen despite their best efforts and their relentless commitment, a unique kind of suffering emerges – not at all equivalent to the suffering endured by patients or their families, but suffering nonetheless. Our young medical trainees need to know this reality, or the dissonant shock will cause even more pain down the road.
These fraught moments cannot be distilled down to “pulling the plug or keeping her going.” We go through this with you, constantly pressing for solutions, easier times, and less pain.
And even when we disagree with our patients and their families on the best course of action, there is never any doubt in our minds that the objective was the same as what it has been all along: to help make things better.