January 11, 2024
Pilgrims Hospice Society’s Lana Crawford, left, and AHS Comprehensive Tissue Centre’s Candice Bohonis pose in front of the Roozen Family Hospice Centre. Photo by Michael James.
Tissue donor Gaetan Benoit, who died in 2022, is seen on holiday in this selfie taken by his wife Katrine Deniset. Photo by Katrine Deniset.
Story by Su-Ling Goh | Photos by Michael James & Katrine Deniset
More Albertans are accessing corneal transplants and seeing the world around them once again thanks to partnerships between palliative care facilities and Alberta Health Service’s Comprehensive Tissue Centre (CTC).
In 2023, at least 83 deceased people donated their eyes to the Alberta Organ and Tissue Donation Program (AOTDP). Of those, 26 came from palliative care facilities in Edmonton, including nine from Pilgrims Hospice Society’s Roozen Family Hospice Centre.
When the new hospice opened in 2021, CTC Senior Tissue Specialist Candice Bohonis approached Pilgrims staff to encourage them to talk to patients and families about the option of tissue donation.
Lana Crawford, Pilgrims’ Resident and Family Liaison, admits her team was hesitant at first.
“It’s such a vulnerable time for (hospice) residents and families — they’re already dealing with so much,” says Crawford. “How are we going to have these conversations?”
Bohonis adds: “It was a big learning curve for everybody.… (I said) ‘Here’s how other units do it — what works for you? Let’s work together.’”
One year later, Crawford was able to start broaching the subject with each resident or their family within their first few days of arrival, as part of routine check-ins.
“I plant the seed,” says Crawford. “We talk about whether or not (tissue donation) is something they’ve ever discussed before or something that’s important to them.”
One of those residents was Gaetan Benoit. Before the 43-year-old died of a brain tumour in August 2022, he made it clear he wanted to donate any tissues he could. His wife, Katrine Deniset, explains Benoit loved to help others.
“Even if you were a new friend or an acquaintance, he would be the first to help you with a move or a renovation,” says Deniset. “It was really in his nature to help his neighbour. He was a community guy.”
Benoit donated his eyes, bones, tendons and heart valves — a process coordinated by Pilgrims and the CTC.
While only one to two per cent of people are eligible to donate organs after they die, most can donate tissues, including patients with cancer. Dr. Andreas Kramer, AOTDP Medical Director, encourages palliative care facilities to offer the option of tissue donation as part of end-of-life care.
“That’s somewhat unique compared to most hospital deaths, where patients in the process of dying often aren’t able to have those types of conversations themselves,” says Kramer. “It’s a way of having something positive come out of what is otherwise a sad situation.”
Bohonis adds: “When we tell (patients) there’s the possibility to actually restore someone’s sight, they’re very excited to actually be able to do something like that.”
According to the CTC, this palliative initiative has helped shorten wait times in recent years for Albertans in need of corneal transplants — down to seven months from two years.
“I think our (hospice) residents at the end of life are often looking for ways to leave a legacy, and I think this is one more way that they can do that,” says Crawford. “They and their families can feel good about knowing they wanted to help somebody else in some way, and (Pilgrims) can connect those dots to make that happen.”
One month after her husband died, Deniset received a letter from the CTC to let her know that Benoit’s corneas restored sight for two people.
“We had talked about legacies and what we leave behind — and this is another thing that reflects his character and his personality. That was good mail to receive.”
There’s a constant shortage of organ and tissue donations. Register your decision to donate online: Alberta Organ and Tissue Donation Registry.
