Hope & Cope’s volunteers rebound from stressful impact of COVID 19

Volunteers renew their beneficial in-person contact with cancer patients

On a sunny day in mid-September, Claude Rouben returned to the JGH for the first time in 20 months, eager to resume visiting cancer patients as a Hope & Cope volunteer—only to have his excitement turn bittersweet.

It was a relief to be back after the worst of the COVID-19 pandemic, he recalls. But the patients with whom he had previously developed close relationships—through quiet chats, the exchange of smiles and moments of silent hand-holding—were nowhere to be seen.

Claude Rouben, a Hope & Cope volunteer, at the nursing station of the JGH Oncology Unit.

Had they weathered the worst and gone home? Had any of them been transferred to Palliative Care? How many had met a tragic end? And how were their loved ones doing? Unfortunately, Mr. Rouben will never know; as a volunteer, he is not privy to confidential medical information.

“That first week was tough, really tough,” he says with a nod and a sigh. “I knew those patients when they were going through a really difficult moment in their lives. And then suddenly, we were separated. I’m sure it must have been hard on them; it was difficult for me, too.”

But important work needed to be done. Undeterred by his personal feelings, Mr. Rouben began making the rounds and introducing himself to new patients who could benefit from his warmth and comfort.

“I began to see some of them on a regular basis,” he says, “and after a short while, the good feelings of helping people came back, just like before. It was such a relief to discover that we enjoyed being in each other’s company.”

Keeping volunteers away from highly vulnerable patients—particularly those battling or recovering from cancer—has occasionally been necessary at critical times during the intense fight against the pandemic at the JGH and at other facilities in CIUSSS West-Central Montreal.

Sometimes overlooked, however, are the deep, emotional repercussions of this essential policy on volunteers, as well as on patients and their families.

It’s a dilemma that’s all too familiar to Carly Berlin. As Program Manager for the Hope & Cope Wellness Centre, she is well aware how therapeutic it can be for many individuals to become volunteers, having themselves recovered from cancer or been a caregiver for someone with the disease.

That’s why many volunteers experienced considerable turmoil when this emotional outlet was abruptly snatched away, compounded by the knowledge that patients were being deprived of the support they craved, Ms. Berlin says.

Lucy Di Cesar, a Hope & Cope volunteer, in the family room of the Division of Palliative Care at the JGH.

“I even heard from some volunteers who said that going through the pandemic was almost like a re‑triggering of their own cancer experience. When you receive a cancer diagnosis, you may have to isolate and not leave your home, because you’re afraid that contact with other people might make you sick.

“So, when a lockdown became necessary during the pandemic, these volunteers found themselves thrown back into situations of, ‘I remember this. I remember what it felt like.’”

For Hope & Cope volunteers like Lucy Di Cesar, who sees patients in Palliative Care at the JGH, it can be frustrating when vital safety precautions prevent her from guiding families to services that had been available in pre-pandemic days.

Though the microwave oven, kettle, toaster and refrigerator are still available to them, they must leave the room as soon as their food has been heated or put away.

Nor, for the time being, can the family room function as meeting place, where members of various families used to relax, compare notes and engage in what Ms. Di Cesar calls “the act of healing one another.”

Nevertheless, she says, she’s happy to be back, “bringing a smile to someone who’s in pain or alone or just needing to talk about something normal, without any medical jargon. Leaving them with a little joke or a smile just feeds my spirit.”

Ms. Di Cesar recalls that during the initial lockdown in early 2020, a great deal of consideration was given to alternatives to in-person contact. However, telephone calls and Zoom meetings turned out to be impractical for Palliative Care patients or their families, since this kind of support cannot be provided effectively at such a difficult and sensitive moment in the patient’s life. The hospital also lacked the bandwidth to install an Alexa-type device at the patients’ bedside.

Until this past fall, she says, the only break that patients received was a four-week period in November and December 2020 when volunteers were allowed to distribute donated holiday gifts that patients could then give to their own relatives, as they had done in 2019.

“When many of us started coming back last summer,” Ms. Di Cesar says, “the reception we received from the nurses was … well, I can’t even begin to tell you. It was overwhelming. It feels so good to know they appreciate what we do for our patients.”

According to Ms. Berlin, Hope & Cope is continuing to use visual online platforms for many of the activities that used to be offered in person at the Wellness Centre. Included are yoga, support groups, lectures, webinars, courses on coping skills and dealing with difficult emotions, and workshops on cooking, art and relaxation. The phone is used for one-on-one counseling.

As a result, Ms. Berlin says, volunteers have had to learn new skills, such as recognizing signs of distress in a person whose image appears on screen, and being aware of what’s known as “Zoom fatigue,” a decline in focus and concentration after 45 minutes of an online meeting.

For the moment, Hope & Cope can’t make any long-term plans, because the situation is so changeable, Ms. Berlin explains. “We did a survey of patients who were accessing our programs virtually and we found that most still want to continue that way. They miss the in-person contact, but they’re still worried and afraid.”

This leaves Ms. Di Cesar hoping she won’t have to leave her Palliative Care patients again. “When someone is in pain, we sit with them and talk them through it until the nurse can come. It may seem pretty basic, but that human contact is irreplaceable.

“As volunteers, our work has been an incredibly important part of our lives. We’re here because we really want to be here. I just pray that no other waves of COVID-19 take this away from us again.”