'Nobody wants to talk about death:' Patients' stories inspire play about palliative care
End-of-life researchers aim to teach empathy with new play created from personal stories
In a small dark room in North End Halifax, an audience sits in a circle, their chairs facing inward as four actors move around them reciting lines. There's no set, no microphones, no costumes.
"The words the doctor had used were: 'You have advanced cancer. There's no hope for you.' Where do you go from there?" one performer says.
Another actor responds, "They don't know how to approach a person that's hurting."
"We did live," a third actor says. "For those six months, we did everything we could think of doing."
The PEACE Project (Palliative Education through Art, Communication, and Engagement) weaves together the experiences of palliative care patients and their families in a theatre production, with every line a direct quote from a patient or caregiver.
The play has toured to Montreal and Toronto, where it's been performed in nursing homes, hospitals and health facilities, and was also part of the Halifax Fringe Festival.
But the play's main purpose is to serve as an educational tool. The creators tapped into personal stories with the goal of teaching empathy to medical professionals and to highlight the obstacles of navigating the palliative care system.
A play "can allow [medical] students to actually see themselves in their patients' shoes," Alexis Milligan, artistic producer of The PEACE Project, told CBC News.
The play addresses what it's like to receive a terminal medical diagnosis and what it's like to talk about it. The production also delves into struggles faced by many patients and their families.
Audiences watch, for instance, a daughter describing the movie night in a palliative care unit she organized for her mother. In another scene, a woman recalls feeding her husband pain pills with ice cream. And just when the depiction grows heavy, The PEACE Project pivots to a lighter note, with the Star Wars Theme heard alongside a segment depicting one patient's wish to have the tune played as her casket is wheeled away.
"The first time I saw this performed, I cried," said Dr. Brenda Sabo, a nursing professor at Dalhousie University in Halifax and the project's lead researcher.
Sabo has spent her life counselling people at the end of their lives, researching and teaching palliative care. But she became frustrated when her students weren't connecting with the material through lectures and other traditional teaching methods. She also kept hearing — from patients and their families — about the need for change in the palliative health-care system. So she turned to art for an innovative solution.
Working with researchers in Montreal and Toronto, Sabo spent two years conducting in-depth interviews with cancer patients from across the country who were at the end of their lives. Together with Milligan, she crafted a play from that research. Personal connections and the "little things" that made a big difference in patients' experiences were recurring themes that stood out.
Health-care professionals, patients and families want to have the conversations, but are not sure how to initiate them.- Dr. Brenda Sabo
What's key is the way nurses and doctors are taught about death and dying, said Sabo, who wants to see palliative care established as a mandatory course for health-care professionals across the country and for medical students to be taught how to discuss end-of-life treatment with patients.
"Health-care professionals, patients and families want to have the conversations, but are not sure how to initiate them," she said.
"They want to do it, but may feel inadequately prepared to do it or not prepared to deal with the emotions that may come out of a conversation."
What 'real people have gone through'
The substance of the challenging project was not lost on the four young graduates of the Dalhousie Fountain School of Performing Arts who helped bring The PEACE Project to life. For some performances, individuals who had been interviewed by Sabo or other researchers were present in the audience.
"Rarely do you get to do shows where you know you're telling the story of someone who's in the audience," said actor Stepheny Hunter.
"These are real people that have gone through these stories," said actor Zachary Comeau, "and there's not a single word of it that's fake."
Each performance ends with a question-and-answer session, with audience members encouraged to share their experiences with palliative care. The $100,000 project, funded by the Canadian Cancer Society, is unique in Canada for bridging art, science and education.
The PEACE Project will be included in the curriculum of nursing students at York and Dalhousie universities this fall. There are also plans to present it to medical students.
Sabo hopes the play will ultimately inspire changes that could improve end-of-life care: to have patients referred to palliative care earlier (versus in the last few weeks of life when families are in crisis), to create more spaces where people can die outside of hospital and to demystify palliative care itself.
"It is not just about death, it is about much more," Sabo said.
"It's about quality of life."