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People often ask me why I entered palliative care as a physician, and I have been hesitant to give an answer, mainly because I wasn’t entirely sure myself. There was something that attracted me to this field, but the search for the overriding reason has eluded me, until now.
There are the common and universally correct answers for working in palliative care: it is a fulfilling vocation being in a field where patients and families are experiencing the end of a life. People are often appreciative of the care, and it is truly an honour to be invited in the family circle. While the eventual end is known, the journey to get there is fraught with a rollercoaster of emotions. Family and friends usually come together during this period, and what binds them is love, commitment and legacy. All of these reasons play a role in motivating me in this field, but it’s also more complicated than that.
I have been on the receiving end of discriminatory words from strangers that have been harmful. These memories have stayed in me and float around, sometimes rising quickly when unexpected, but never fading. It amazes me how vivid these hurtful experiences remain.
The amazing thing about words is that they can be equally impactful in a completely opposite way. How fortuitous that with some learning, practice and patience, people who say harmful things can change their words of harm to words of good.
In this moment in time, the floodgates around race and discrimination have begun to open. The willingness to have these conversations is more acceptable. And I have been thinking more about words I’ve heard.
Once, about 13 years ago, I pulled up to a red light and stopped beside a pickup truck. My window was down, and so was the truck’s passenger window. I remember my left hand twitching to push the button to raise my window, as a barrier. It was an instinctual protective mechanism. But it was too late to do so, the driver would notice and I didn’t want to draw attention to myself.
I took a deep breath and waited for the light to turn green. I felt a heightened sense of tension, expecting discriminatory words to come as they had in the past.
“Hey terrorist,” the pickup driver shouted through my window. The light turned green and I drove off.
People conjure words, deliver them and they land somewhere.
I also recall making a home visit to see a dying patient. As I tried to figure out how to enter the code to get into the building, I could feel someone’s gaze. A familiar dread crept over me. I waited, and I could feel palpitations, because I knew confrontational words would come. Soon I was asked why I was there and asked to show my ID. The white medical student with me, however, was ignored, and she was able to walk ahead into the building while I stood there stammering to explain myself.
Neurophysiology works to implant these emotional experiences, and they sit in the mind ready to surface anytime. It’s your heart that feels and hears these words, not just your ears.
Another time, at a faculty retreat, a guest speaker tried to be funny while reviewing a study. The study was about the substandard cardiac care delivered to those with names of a Middle Eastern descent compared to traditional European names. To make a joke with the series of Arabic names, he equated the names with the phrase “Death to America!” I sat there shocked and suddenly anxious with a galloping heart rate at what I’d heard in such a setting. I was also disheartened to hear laughter. I still regret not walking out of the room.
To say something when the culture and space does not allow for such conversation is a risk that many of a minority background do not take. It’s too heavy a burden to fight the fight alone, and the payoff cannot change the result.
Words of discrimination are sharp and piercing. It might just be one word or a look that conveys a word, but the memory sticks forever.
In my work, words can be similarly impactful, but in a different way. Palliative physicians often say that surgeons have their scalpel and we have our words. We treat patients and families using a set of words, safe and measured, delivered in a way that improves the dying process.
Patients and families remember how their physicians approached them, in a time of their lives when everything seems to happen in slow motion. They remember the demeanor, the way they are spoken to, how they feel in the moment. It is a set of experiences that patients die with, and families carry with them through their lives. “I remember when Dad was sick…”
One of the reasons why I went into palliative care was to have some control over the words spoken between two human beings. Professionally, if I can lead deeply emotional conversations with positive words, I have a sense of accomplishment. It’s an exercise of taking the harmful words said against me, and mirroring them out in the opposite way.
Words of comfort can soothe a soul just as words of harm can stick in the memory for decades.
I worry about my young children, because I don’t want them to experience the discrimination that I went through. I worry that if this moment in time does not lead to real systemic change, with real leadership accountability and real results, then the script will remain the same for many.
But, I feel hope as well. Recently, in a family gathering, my 15-year-old nephew, who lives in Toronto, said emphatically, “I have never experienced racism!” I was shocked to hear this, but maybe things have been changing.
Hope in the future must be stronger than cynicism. As a palliative care physician, I am bound by the possibility of hope, because patients and families need hope to survive. If my nephew’s experiences are now common, my hope will continue to grow.
Ahmed Jakda lives in Cambridge, Ont.