Obituary: Hope & Cope founder Sheila Kussner was a ‘force of nature’ in cancer care

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In a story she told more than once, Sheila Kussner described being devastated at 18 when a date dumped her after learning she was an amputee; she had lost part of her left leg to bone cancer at 14. Her mother told her she had two choices: She could be bitter — or she could be better.

She chose better. Kussner went on to live a remarkable life of meaning, championing the needs of cancer patients and their families. She died peacefully at home Tuesday morning. She was 91.

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She founded Hope & Cope, a peer-based cancer support program affiliated with the Jewish General Hospital, in 1981. She was also an unparalleled fundraiser: Kussner spearheaded a campaign that helped raise $30 million to help establish an oncology program as part of the department of medicine at McGill University. She received many accolades — she was an officer of the Order of Canada and the Ordre national du Québec and held honorary doctorates from McGill and the Université de Montréal, among other honours — but she found the greatest reward in the simple act of reaching out and helping people, whether with a kind note, a listening ear, practical help or empathy.

“Sheila was a force — an incredibly intuitive, driven woman who really wanted to make a difference in cancer care at a time when no one wanted to say the word out loud,” said Suzanne O’Brien, who was executive director of Hope & Cope for 20 years and has gone on to chair its board.

Kussner knew, from personal experience, the impact cancer has on patients and on all those who love them, O’Brien said. “She had an intuitive understanding that if you have walked down this path, you have an understanding that complements the medical system.”

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Kussner was the first in Canada to introduce a peer model into the discipline of oncology as a complement to the work of nurses, doctors and other members of health-care teams — a model in which “talking to a cancer survivor could be part of their recovery,” said O’Brien.

It was known that peer support works, she said, citing such programs as Alcoholics Anonymous. “But the idea of peer support in a hospital setting, as part of the health-care team, was revolutionary.”

Hope & Cope started with six volunteers and a part-time social worker and grew into an internationally recognized organization and a model for centres around the world.

Getting medical professionals to sign on was an uphill battle, said O’Brien: It was a conservative time and doctors ruled. But Kussner persevered with the idea that cancer survivors could humanize the process.

“I think one of her successes is that the medical team grasped the value of Hope & Cope and the peer model. They use us very well: it’s not us versus them. The volunteers are an essential part of the team,” O’Brien said.

Doctors can treat people with cancer, said survivor Mike Flinker, a businessman and philanthropist. “But what they can’t prepare you for is the mental aspect,” he said — the fear, anxiety, depression, frustration and nervousness with which so many cancer patients contend, including him. “And that is where survivors, to my mind, play the most critical role.”

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Still, getting doctors on board took time “and Sheila was wise enough to know that training was key. Good intentions were not enough,” said O’Brien. “We needed a level of professionalism in volunteers, and the doctors and nurses provide that training. There was a very disciplined model of making volunteers professional in their approach as volunteers.”

Kussner also recognized that research and evidence were necessary to underpin cancer support activities. She was instrumental in establishing the Christine and Herschel Victor/Hope & Cope Chair in Psychosocial Oncology, the first such endowed research chair in Quebec.

“Being started in a hospital, we were part of an academic medical circle,” said O’Brien. “We invested in research very early.”

Hope & Cope is a presence at the Jewish General and at the Hope & Cope Wellness Centre, Montreal’s first hospital-affiliated free-standing cancer wellness centre. Opened in 2007, it offers programs to help patients live well — with cancer and beyond cancer. Programs are free of charge.

To Hope & Cope interim executive director Sara Saber-Freedman, Kussner “was a formidable personality, and unforgettable. Just a force of nature — and impeccably turned out, always, very aware of the impression she wanted to project and a real presence. She was just adored by the staff, volunteers, everyone who worked with her. The sense of loss they are feeling is in proportion to the way people felt about her.”

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On Wednesday, people were saying “I feel like I have lost my friend,” said O’Brien. “They lost a friend who heard them and who understood them and understood what they needed. And that is something quite extraordinary.”

Kussner “had a wonderful way of connecting with people on a very personal level,” O’Brien added. She inspired and mentored and nurtured their creativity and leadership qualities and, by extension, “everybody feels in a personal sense responsible to and responsible for the welfare of the organization. That is her abiding legacy, that she has lit that torch in others.

“Sheila was much loved and much respected, but at her essence she was a simple, loving woman who wanted to make a difference and had that sheer drive to bring on people and inspire others. No one person can change the world, but when you bring on others to help you, you really do change the world.”

Kussner also had the vision to know how to make sure Hope & Cope has the capacity to continue without her, said Saber-Freedman. A legacy campaign undertaken last year has raised more than $8 million to date.

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Kussner “was an incredible advocate for cancer patients,” said Flinker. “And her greatest legacy is what she left the community. Her main concern was making sure that Hope & Cope would thrive once she had passed. And she has done that. Ultimately, Sheila’s legacy is that she created an organization that will continue in perpetuity.”

Kussner’s concern wasn’t simply “for the bright lights — the galas and events in ballrooms and the ability to call the prime minister,” said Dr. Abraham Fuks, dean of McGill’s faculty of medicine from 1995 to 2006. (Kussner and former prime minister Pierre Trudeau “were friends, no question. I am living witness,” he said.)

“She had that ability to connect at that level of society but, as I would learn years later, also to go out at 10 o’clock in the evening to drive to visit somebody who needed help. Many fewer people know that but, to me, it was very striking as a sign of her commitment,” Fuks said.

“Her ability to span all of society was absolutely remarkable. You read a lot about philanthropy and fundraising and about people who do good. To see the combination in one person is amazing. The success in part was due to the authenticity of her voice. There was charm and an ability to connect to a potential donor and gauge a request so the donor was happy to give, as opposed to feeling put upon to give,” Fuks continued.

“She was incredibly genuine.”

Kussner is survived by daughters Janice and Joanne, son-in-law John Leopold and grandchildren Justin and Carolyn Leopold. Her husband, Marvyn, died in 2013.

Funeral services are Friday at 1 p.m. at Paperman & Sons, 3888 Jean-Talon St. W. Hope & Cope and the Wellness Centre will be closed on Friday. Contributions in Kussner’s memory can be made to Hope & Cope c/o the Jewish General Hospital Foundation; 514-340-8251; hopeandcope.ca.

sschwartz@postmedia.com

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