Bringing palliative care home: volunteers drive new Kingston project

Feature Stories | 11 Dec 2023

Photo: A new volunteer palliative care program being developed in Kingston is based on a model from Kerala, India

“Volunteers adding life to patients’ days.”

That’s the powerful model of compassionate care at the heart of the Kingston Cares Project (KINCARES), according to Dr. Jean Mathews, a palliative care physician and Assistant Professor in Queen’s Departments of Medicine and Oncology.

Dr. Mathews is co-leading a new pilot project and research program in Kingston that trains volunteers to support patients receiving community-based palliative care services. The aim is to combat the social isolation experienced by patients with a life-limiting illness. Volunteers are trained to provide emotional, social, and spiritual support – informal caregiving to supplement the work of healthcare professionals.

“In Kingston, like most places in Canada, there is a shortage of formal homecare services – from nurses to personal support workers,” Dr. Mathews explains. “And formal healthcare services are not well-suited to meet the social and emotional needs of patients. The Kingston Cares Project will offer an innovative, low-resource, high-value grassroots intervention for seriously ill patients experiencing social isolation.”

The first step? Finding volunteers. KINCARES is in the process of recruiting 40 volunteers to undergo training to support patients with serious illness facing social isolation in the community. Recruitment efforts are focused on seniors’ organizations, neighborhood associations, and faith-based organizations, but all volunteers are welcome (those interested should contact kincares@kingstonhsc.ca). Volunteers will complete online training on informal caregiving and establish a social connection with patients to supplement the medical care provided by their palliative care teams, Dr. Mathews says.

KINCARE docs — Dr. Christopher Booth and Dr. Jean Mathews co-lead the Kingston Cares Project

“Many of those interested in volunteering have had a loved one experience palliative care – a family member or friend,” he notes. “They want to give back to the community.”

KINCARES’ palliative care model is based on one found in Kerala, India – an initiative led by Queen’s Global Oncology partner, Pallium India, a palliative care institute accredited with the World Health Organization.

Dr. Mathews was born in Kerala and has spent time on the ground as an observer of Pallium’s program. Dr. M.R. Rajagopal, Chairman of Pallium India, and Queen’s University’s first adjunct Professor of Global Oncology, will serve as a collaborator on KINCARES. Another crucial partner for volunteer recruitment is Compassionate Communities Kingston, which helps support those living with life-limiting illness.

Patients involved in the KINCARES study will be followed by palliative care doctors and nurses while volunteers provide critical companionship – ideally three visits per month. The project is being supported by the Southeastern Ontario Academic Medical Organization (SEAMO) Innovation Fund.

Co-lead Dr. Christopher Booth was also inspired by time spent on sabbatical in Kerala, where he witnessed the model’s impact. United with Dr. Mathews at Queen’s University, they hope to replicate the initiative’s success in Kingston.

“It’s about redefining care at the end of life and helping change the narrative around dying,” says Dr. Booth, a professor in the Departments of Oncology and Public Health Sciences. “There are many vulnerable patients living at home who need more support. KINCARES could make a big difference in the quality of life for patients with terminal illness. There will also be tremendous benefits for the engaged community volunteers who can improve the lives of others.”

There is one notable difference between the programs in Kerala and Kingston. The level of pre-existing community connection between volunteer and patient. In India, volunteers typically come from close-knit neighborhoods and villages, and have a pre-existing relationship or rapport with patients in their communities. The success of the Kingston project will depend on forging new, meaningful connections.

Doctor helps patient in Kerala — Pallium India's health team (top photo) is led by Dr. M.R. Rajagopal seen above (credit: Tom Price). The volunteer-driven palliative care model is being developed locally as the Kingston Cares Project.

“We need to study how that companionship between a volunteer and a patient is developed in Kingston, and how best we can support and encourage the development of a compassionate community here,” Dr. Mathews says.

The Queen’s researchers plan to study the model’s implementation, effectiveness and transferability to North America. That analysis will include qualitative surveys and interviews with patients, family members, and volunteers. Their long-term goal is to demonstrate success and offer a blueprint for expansion. Notably, Compassionate Communities has chapters in other cities across Canada and around the world.

"If we are able to demonstrate the feasibility of this project, then we're well positioned to scale it up," Dr. Mathews says. “First, we need to find out what our patients and volunteers find valuable, what sort of activities they engage in, and how they develop a companionship.”

To volunteer for the KINCARES Project, contact kincares@kingstonhsc.ca.

Bringing palliative care home: volunteers drive new Kingston project

“Volunteers adding life to patients’ days.”

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