Few times in life are as fraught with challenge and emotion as the final year of life—whether a person is in the end stages of a fatal illness or is simply failing as they grow older and increasingly frail under the burden of multiple chronic conditions.
Through BRIC NS, researchers at Dalhousie University and the Nova Scotia Health Authority (NSHA) have teamed up with colleagues in Prince Edward Island to learn how to improve care and support for people—and their families—in the final year of life.
The researchers want to know how services in the community—such as hospice, respite care, spiritual care, meal delivery services, and so on—can be better integrated with primary health care services delivered by family physicians and nurse practitioners. Their goal is to find ways to ensure consistent delivery of high-quality support to the person and the members of their family who are providing day-to-day care in the home.
“We’re investigating how community-based palliative care can be improved through a case management approach,” explains principal investigator, Dr. Grace Warner, an associate professor in the Faculty of Health Professions at Dalhousie. “This approach provides patients and families with education about the complexities of their current and emerging needs, connects them to supports in the community, and provides a formal means of sharing information between family caregivers, community-based service providers, and primary care providers.”
Improving the integration of community-based-palliative care will not only result in better symptom control and quality of life, it will also reduce stressful visits to the emergency room and allow more people to die gracefully at home.
Dr. Warner and her collaborators—including NSHA primary care researcher, Dr. Tara Sampalli, and P.E.I.-based researcher, Lisa Garland Baird (a registered nurse and PhD candidate)—are able to pursue this investigation thanks to initial matching funds from the NSHA Research Fund. This allowed them to secure a knowledge-synthesis grant from the Canadian Institutes of Health Research (CIHR), through its Strategy for Patient-Oriented Research (SPOR).
“Patient engagement is integral to our research,” notes Dr. Warner, who describes the project as a “realist review.” This involves conducting a comprehensive literature review and then sharing the results of the search with stakeholders—including patients—to probe the issues and identify new questions for further investigations. “It’s a qualitative approach that involves a lot of listening and back and forth as we explore the issues in ever-tightening circles.”
The Maritime SPOR Support Unit (MSSU) is assisting the researchers with the literature search, coordinating patient involvement, and disseminating the findings.
“The support from BRIC NS in putting together our research team and preparing a successful application, and the support from MSSU, makes this kind of research highly feasible—even when you have a heavy research, teaching and/or clinical workload,” Dr. Warner says. “We are fortunate to have this kind of expertise and support in our research community.”
The researchers intend to build on their findings from this study to develop an intervention study to examine how community-based palliative care can reduce health system costs—particularly in terms of avoided inpatient stays.
“The great thing about these projects through BRIC NS is that we’re working with the health system decision makers, so our research is informed by their perspectives and our findings are put into action,” says Dr. Warner. “The idea is to produce immediate, high-impact changes to the way services are designed and delivered… in the case of this particular work, our goal is to smooth the path on people’s journeys through the final stage of their lives.”
Photo from left to right: Researchers George Kephart, Grace Warner, Ruth Martin-Misener, Tanya Packer and Tara Sampalli are working together through BRIC NS-related and other projects to improve palliative and end-of-life care.
BRIC NS results to inform palliative care improvements in NS and PEI
Relevant findings of Dr. Warner’s study will inform an improvement project at NSHA. Co-led by Cheryl Tschupruk, Dr. Crystal Todd, Erin Christian and Jo-Anne Wentzell, this project will engage primary health care teams in developing, testing and refining an operational framework for integrating a palliative approach into primary health care settings in Nova Scotia. Findings will also be incorporated into Health PEI’s Integrated Palliative Care Program.