Jessica Bytautas recognized for project that seeks to improve community-based hospice palliative care for those who are precariously housed or homeless
KITE Trainee Jessica Bytautas had travelled to Hamilton intending to interview a man days away from entering hospice care about his experience participating in a trial for end-stage cancer patients.
Instead she found herself being regaled with stories about the man’s days as a traveling salesman – and being stuffed full of chocolate.
This isn’t the first time Bytautas deviates from the intended path on a trip through southern Ontario as part of a psychosocial sub-study with the University of Toronto’s Institute of Health Policy, Management and Evaluation.
Despite expecting the mood of such interviews to be somber, she is pleasantly surprised that, more often than not, the interviewees are happy to share stories about their lives. These one-on-one experience spark an interest within Bytautas in palliative care research.
Fast forward a few years. Bytautas has since turned that interest into an award-winning project that recently received the inaugural Canadian Cancer Society Research Training Award.
“I’m honoured and truly grateful for the belief the Canadian Cancer Society has shown in my work,” said Bytautas, who is in the final year of her PhD program in Social and Behavioural Health Sciences at the Dalla Lana School of Public Health at UofT. She is sharing her story to mark World Cancer Day (Feb. 4).
The award supports growth and innovation in the next generation of diverse cancer researchers across Canada at the master’s, doctoral and postdoctoral levels. Bytautas earned the award at the doctoral level and will receive $55,000 for one year of funding.
Bytautas was recognized for her PhD project, which explores what legacy means for hospice palliative care patients living with cancer, many of whom are precariously housed or homeless, and the role volunteers play in end-of-life care. The aim of the project is to inform community-based hospice palliative care policy and programming to better support people living with cancer at the end of life.
“In thinking about death, you’re actually asking, ‘What is life?’” said Bytautas. “This project is an incredible opportunity to reflect on life, love and all of the things that make this human experience so exciting and precious.”
Bytautas conducted research for this project by interviewing patients, volunteers, staff, and health care providers at a community-based hospice palliative care organization in Toronto – which serves people at the end of life who are living with cancer and who may be precariously housed – about legacy activities.
Legacy activities are creative projects produced by people near death that help people to reflect on their lives, what matters most to them, and how they wish to be remembered.
While research on legacy activities suggests that patients and families may benefit socially, emotionally, and spiritually, there has been little attention to the accessibility of these activities.
Precariously housed people face many barriers to access community hospice palliative care, despite experiencing higher rates of disease and premature death.
“We need better psychosocial, emotional, and spiritual supports for people living and dying with cancer across Canada – especially those who are socioeconomically disadvantaged and may be otherwise marginalized in the health care system,” said Bytautas.
A portion of the funds from the award will be used to create a documentary about her research and the work of palliative care organizations in Toronto.
”This project will not only provide much needed research to improve community-based hospice palliative care policy and programming but will also share Bytautas’ findings in an accessible and innovative way,” said Dr. Pia Kontos who is a KITE senior scientist and professor in the Dalla Lana School of Public Health at UofT and Bytautas’s PhD supervisor.
Bytautas is currently analyzing her research data and intends to complete her project by the end of this summer. Work on the film will begin in spring.
“Thinking about death doesn’t have to be scary or something we should hide from, but rather we should run towards it and embrace it as an opportunity to make meaning of life,” said Bytautas.
“If my research can contribute in some small way to these bigger cultural conversations, then I can die happy.”