“I learn by going where I have to go”

“The Heart of the Matter: Personal reflections on caring and being cared for.” An interview with palliative care volunteer and patient advocate Jim Mulcahy who shares how he became involved in palliative care and how volunteers make a crucial impact.

The McGill National Grand Rounds programme is proud to welcome Jim Mulcahy, a longtime palliative care volunteer, to give his lecture,

Patient advocate Jim Mulcahy on giving care, perseverance through grief, and humanizing palliative care. Jim Mulcahy’s path towards palliative care volunteer work was, as he describes it, “like going up the ladder where one step led to the next, but none of it was engineered by myself.”

This path began in the most cataclysmic way possible. The high school English and drama instructor’s life changed forever when the aches and pains from “a stressful year” turned out to be advanced cancer.

Even worse, Jim’s wife began showing signs of Huntington’s Disease—which three of his four children would inherit. A chain reaction of mourning periods was thus set in motion, along with an endless cycle of caring and being cared for.

A patient lies in a hospital bed, holding someone's hand.

It was the caring Jim found himself drawn to. He is, after all, “predisposed by personality and an Irish Catholic upbringing to be of service”. But it was the experience of his illness and treatment that ultimately drove him to direct his caretaking energy outwards—at first, reluctantly.

“At the end of chemo for my first cancer, I was absolutely averse to going into a hospital,” Jim admits. “I sought refuge in caring for Sarah.” This refuge lasted fifteen years, during which he would be diagnosed with a career-ending second cancer.

Jim became Sarah’s primary caregiver as they endured her gradual decline. “Sarah died in slow motion,” Jim explains, not shying away from the horror. “It was a slow crucifixion.”

It would take two years post-cancer treatment for Jim to feel prepared to return as a volunteer. There, he used his skills as a caregiver, listener, and dramaturge to comfort patients and their families. Opportunities began to emerge, among them a palliative care conference invite; his family’s story published as a Canadian Virtual Hospice resource; and writing, directing, and producing a play with a group of adults living with schizophrenia.

Each new experience brought more connections with healthcare professionals and, more critically, emboldened Jim to find and use his voice.

He would need it. Tragedy struck again when a number of years after Sarah’s death, his relationship with his new partner, Anya, was cut short by a sudden glioblastoma diagnosis. Her death was quick as Sarah’s was slow, happening within a month of receiving the news. To add insult to injury, Jim received his third cancer diagnosis only weeks later. Yet despite the weight of this barrage of loss, he continues his work as a patient advocate and palliative care volunteer. The cycle of caregiving persists.

I asked Jim how perseverance was even possible. He posed another question: “How can I live in a meaningful way?”, and revealed that the answer lies not in travel, golfing, or wine-making, but in “[living] in relation to people who were enduring what I had endured, but in the final moments of that pilgrimage.”

The words of Theodore Roethke provide an apt summary: “I wake to sleep and take my waking slow . . . I learn by going where I have to go.”

While Jim hesitates to speak on the technical aspects of palliative care, he can offer what Dr. Joan Halifax, Buddhist priest and palliative care professional, calls the “compassionate heart”.

His advice for palliative care volunteers is to offer this through “that skill of listening intently; of listening gracefully, not intrusively.” He goes on to say that this “is the ground floor of being a medical professional in palliative care, but especially a volunteer.”

Deep, compassionate listening is transformative for patients at the end of their lives. As they slowly lose autonomy, the work of rehumanizing them becomes essential. This puts palliative care volunteers in a place where they can offer something monumental:

“You are often offered the privilege of listening to their stories, and through that listening, to establish a caring relationship. When you do listen, honestly, caringly, you affirm the inherent value of each individual in all his or her complexity at a point when their life is coming down to that fading point, you have the capacity through the heart of your listening to affirm the ultimate dignity of that person lying in that bed with all those lines coming into them and the sorrow in their in their eyes, and it is an enormous gift to have those moments . . . it is a moment of humanizing.”

Jim Mulcahy hopes his address will be of some benefit to caregivers and those in need of care alike, “that my stories will resonate in a meaningful way with audience members creating at least a moment of community, sustenance, and encouragement in the face of these challenging times.”

His talk, entitled “The Heart of the Matter: Personal Reflections on Caring and Being Cared For,” is part of Palliative Care McGill’s National Grand Rounds series. It will be held in-person at the Jewish General Hospital in Montreal as well as online on March 26, from 12 p.m. to 1 p.m. EST.

If you are not already registered, it is not too late. This lecture will be delivered in English, with live captioning in French available for those who attend online.