Our current research studies and team/capacity development grants, funded by the Canadian Institutes for Health Research (CIHR), involve:
- End of Life Care for Cancer Patients
- Interdisciplinary Capacity Enhancement (ICE) for Vulnerable Populations
- Inter-provincial New Emerging Team (NET) on Palliative and End of Life Care
- Costing of Palliative Care
- Previous End of Life Research Project Funding
Improving care at the end-of-life is of growing importance to Canadians. Our population is aging and we face longer lives with prolonged experiences of multiple chronic diseases. One of these is cancer, the leading cause of death among Canadians. Given that the major driving force behind the increasing demands for end-of-life care is the growing number of elderly in our population, we need to know what care is being provided and the relationship between care and end-of-life outcomes, such as location of death. We also need to know what population characteristics and health system factors are associated with this care and whether there are inequalities or differences in care provided depending on one’s age, gender or geographic region.
Therefore, the objective of this study is to (1) examine the differences in health service use and end-of-life outcomes related to age and gender, and (2) to identify population characteristics (individual and community) and health care system factors contributing to these differences. To meet these objectives, this study will use administrative health data and Statistics Canada information associated with all cancer deaths in Nova Scotians between 1998 and 2003. The results of the proposed study will provide much needed evidence for national, provincial and local health agencies developing policy and programs for dying Canadians.
To view the detailed methods of this report, click here.
Research that examines the experiences of vulnerable populations at end of life is quite limited. In this regard, we understand "vulnerable populations" to be those that are at a higher risk of adverse health outcomes because of their unique circumstances. While all persons are vulnerable to some degree at end of life, some groups face additional challenges because of their social status, ethnicity, religious background, race, gender, age, or geographical location.
The Network for End of Life Studies (NELS) will engage an interdisciplinary Team of researchers and community and institutional partners to conduct research into various factors that comprise vulnerability at end of life and identify disparities and inequities in quality end of life care. Our primary goal is to build capacity and conduct research to inform decision makers and assist in developing policies and interventions to overcome inadequacies in publicly funded end of life care for persons with terminal disease.
Specifically, the Network will 1) develop a system that will enhance identification and surveillance of vulnerable populations at end of life; 2) design and conduct pilot studies to facilitate the development of full research proposals that examine and address vulnerability and inequity in provison of quality end of life care; 3) translate knowledge that more fully informs decision makers, health professionals and researchers; and 4) create an interdisciplinary Team of researchers, trainees, health professionals, community partners and advocates for vulnerable populations. Thereby, we will develop a conceptual framework to further the definition of vulnerable populations. Our goal is to conduct research and develop policies and interventions to address disparities and inequities in the provision of end of life care.
In response to the need to build Palliative and End-of-Life Cancer Care research capacity from a cross-cultural perspective, the Canadian Institutes of Health Research have granted a 5-year multi-disciplinary, multi-province new and emerging team (NET) grant.
Paliative Care in a Cross Cultural Context: A NET for equitable and quality cancer care for ethnically diverse populations
New Emerging Teams: Palliative and End of Life Care Strategic Grants from Canadian Institutes of Health Research (CIHR)
Richard Doll (PI, BCCA) with Arminee Kazanjian (BC), Anne Leis (sask), Grace Johnston (NS), Gillian Fyles (BC), Maria Cristina Barroetavena (BC) - $1,396,327 over 5 years
The NET will examine how cultural meanings shape the ways that individuals make meaning out of illness, suffering, and dying. It will address the issues of providing equitable and quality cancer care for culturally diverse populations in Canada.
The NET will address patients’ and families’ needs beyond the physical to encompass the psychological, social, cultural, and spiritual determinants of health, specifically during palliative and end-of-life care. The NET will create a cross-cultural research program that addresses specific questions that fall into the three streams of access, caregivers, and complementary and alternative medicine as they relate to palliative and end-of-life cancer care. The NET will integrate a knowledge translation (KT) process into the research cycle, as appropriate, and will include a KT component in future NET funding applications. The NET will nurture the growth of new researchers and support their training in a multi-disciplinary environment.
New Emerging Teams: Palliative and End of Life Care Stragetic Grants from Canadian Institutes of Health Research (CIHR)
Principle Investigator: Dr. Daren Heyland, Professor of Medicine and Director of Research Critical Care Program and Clinical Evaluation Research Unit, Queen’s University
Co-investigators: Dr. Deborah Cook; Professor of Medicine and Clinical Epidemiology & Biostatistics, McMaster University; Dr. Joan Tranmer, Director of Nursing Research Kingston General Hospital and Assistant Professor Department of Epidemiology and School of Nursing Queen’s University; Dr. Amiram Gafni, Professor of Health Economics at McMaster University; Dr. Mita Giacomini, Associate Professor of Clinical Epidemiology & Biostatistics at McMaster University; Dr. David Kuhl, Associate Professor Department of Family Practice University of British Columbia
Collaborators: Dr.Tasnim Sinuff, Assistant Professor, Sunnybrook and Women’s Health Science Center, University of Toronto; Dr. Graeme Rocker, Professor of Medicine, Dalhousie University; Dr. Peter Dodek, Associate Professor of Medicine, Center for Health Evaluation and Outcome Sciences, University of British Columbia; Dr. Yoanna Skrobik, Associate Professor & Program Director of Adult Critical Care, University of Montreal; Dr. Stephane Ahern, Department of Medicine, University of Montreal; Dr. Chris Frank, Assistant Professor of Medicine, Queen’s University
CARENET is a group of heath care professionals from across Canada who share a mandate to foster clinically-relevant, multi-centre collaborative research related to Palliative/End of Life care (P/EOL) with a focus on communication and decision-making. While we are interested in improving the quality of EOL care in all patients, to date, our work has focused on critically ill and seriously ill (both cancer and non-cancer) hospitalized patients. Funding for this work was provided in 2004 with a 5-year grant from the Canadian Institutes of Health Research.
The main goal of this study is to provide policy makers and other groups with information on the economic burden of private costs that are attributable to the palliation phase of care, and the context in which they occur.
The primary objectives are the following: A) To measure personal costs linked to palliative care in some regions across Canada; B) To assess health care services utilisation among palliative patients and their related costs in the same regions. Secondarily, the study will provide a description of the organizational and the policy context in which these costs are generated.
In addition, the current study will explore whether there is any relationship between personal costs, specific social policies, organizational models of palliative care and health care service utilisation. The research is mainly composed of a one-year prospective survey which will be carried out with 250 families who each look after a terminally ill patient and who participate in a regional palliative care program in five regions in Canada. The current research project proposes providing relevant information, and accurate data, to support palliative care and social policy development in Canada.