Palliative care is often abridged to ‘end-of-life care’. It’s how the field was first introduced to me. I heard these words and conjured, in my mind, a distinct and persistent image. Grayed hair and bed-ridden bodies. The idea of a true life, by my standards, ended but existence carried on. Urine bags, breathing tubes, memory foam tucked in the right places. Dreams forsaken and last goodbyes against a backdrop of morphine drips. I hear the word “end” and the finality of it stings and sticks. I’d imagine I’m not alone in this. We’re told palliative care is where patients are sent when their doctors say, “There’s nothing more we can do.” The end comes after defeat. Their disease is said to be incurable, their circumstance unworkable. The patient is then assigned a title, a fate – terminally ill.
The words “end-of-life care” place undeniable focus on the idea of a fast approaching end. Yet, being on the field with CanSupport’s home care teams I’ve found the very opposite to be true. Great palliative care has a distinct focus on the present. Because, the thing is, these people’s lives are not over and CanSupport ensures they don’t forget that. With time limited, day-to-day meaning is of the essence. Palliative caregivers talk about death with their patients so that fear of it does not consume. They medicate and alleviate so pain does not hinder, so that patients can relish moments and distill out of life what matters most. For some, it was sipping whisky. For some, it was gaining the energy to go to temple once a week. For some, it was seeing their daughter married.
“Best quality of life” are four words truer to the heart of palliative care. Or, as CanSupport says, “adding life to days”. Working with the team was a continued lesson in presence and compassion. I find that’s what makes palliative care so individual. It taps into the subjectivity of human experience and the significance of human connection.
There is no one story that encompasses palliative care. CanSupport’s patients ranged in age from 15 to 87. There were people in all stages of death with different backgrounds that sowed diverse hardships and circumstance. Not all stories were light and rosy. But CanSupport’s idea of the ever-present potential for growth, better-ness, and heart runs through each and every case.
In my following posts, I will share a few individual patient stories my fellow intern and I have co-written. Until then, here are a few patient portraits I have taken – with full consent, of course. These photos and stories will come together in a palliative care booklet that CanSupport will publish in the coming months.
Junkala with her husband and two sons
Japji with her husband, a Sikh Granthi
Neelam with a CanSupport counselor