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The term palliative care refers not only the care and management of patients approaching the end of life but also addresses the reduction of suffering throughout the course of illness and, for family, into bereavement. Palliative and end-of-life care, although traditionally associated with cancer care, intersects with a number of other clinical disciplines, such as cardiology, respiratory medicine, critical care, nephrology, pediatrics and neurology. As our aging population continues to grow and modern medicine provides the means to prolong the life of individuals with a variety of life-limiting diseases and conditions, society struggles with the ethical and legal questions around "appropriate" use of health care resources. Quality of care toward and at the end of life is also a significant issue. Many of the people who could benefit from palliative and end-of-life care do not receive it. All too often it is left to patients, their families and a loosely knit community of volunteer organizations to sort through the myriad of physical, psychological, spiritual and ethical choices.
The key to change lies in rigorous scientific research that will provide the evidence for informed decision-making by clinical practitioners and policy makers. Historically, palliative and end-of-life care research has been underfunded in Canada and small groups of highly committed and dedicated researchers have struggled to obtain recognition for the field as an independent health discipline. In recent years more and more countries, including Canada, have recognized the importance of effective and timely palliative and end-of-life care and are preparing to build a strong research base that includes capacity building as a major component.
As part of the development of the Canadian Strategy for Cancer Control (CSCC) in 1999, the National Cancer Institute of Canada (NCIC), the Canadian Association of Provincial Cancer Agencies (CAPCA), Health Canada, and the Institute of Cancer Research of the Canadian Institutes of Health Research (ICR), formed a Research Alliance to identify cancer research priorities. The identification of palliative and end-of-life care as the number one priority for the Research Alliance provided an unprecedented opportunity to create a strong research base for palliative and end-of-life care.
As a first step, ICR immediately took advantage of the opportunity to partner on two programs already approved for CIHR funding. The first was a New Emerging Team (NET) project led Dr. Pierre Allard, from the University of Ottawa that focused on the structure, process, quality and outcomes of end-of-life care for older persons and how personal, social and environmental factors affect care. This $300,000 per year five-year project, submitted in response to a Request for Applications (RFA) launched by the CIHR Institute of Aging (IA), was jointly funded by ICR and IA. The second was a CIHR Strategic Training Program grant led by Dr. Robin Cohen of McGill University designed to give students and new researchers exposure to all aspects of palliative and end-of-life care and train them to transfer their results quickly to the clinicians who work as front line contacts in palliative care. ICR and the NCIC partnered equally on the funding of this $300,000 per year six-year program.
The next step was to extend the focus of palliative and end-of-life care beyond the traditional boundaries of cancer research through the development of partnerships across a variety of health research disciplines. For example, the Institute of Circulatory and Respiratory Health (ICRH), in collaboration with the Heart and Stroke Foundation, convened a national workshop in March 2003 that focused on the importance of communication in palliative and end-of-life care. Among the workshop recommendations was the need to better describe, understand, and improve patient-provider-family encounters in order to improve the experience of patients with terminal or advanced life-threatening disease and that of their families. Health Canada's Secretariat on Palliative and End-of-Life Care, working with provincial and territorial governments, and a broad range of stakeholders, developed a strategy to strengthen palliative care across Canada. The strategy's key areas of focus were best practices and quality care, education for formal caregivers, public information and awareness, research, and surveillance.
In June 2003, CIHR and partners launched a palliative and end-of-life care initiative that reflected the multiple needs of the palliative care research community. The initiative was designed to support infrastructure development, enhance interdisciplinary research collaboration, encourage the development of early career researchers and attract trainees to this emerging area.
The three components of the initiative were:
This initiative along with the previously funded NET and Strategic Training Program funded 19 pilot projects, 10 NETs, and one Career Transition Award for a total investment of $16.5 million over six years into palliative and end-of-life care research.
This extraordinary investment was made possible by the contributions of the many partners listed, in alphabetical order, in Table 1. The support of the provincial cancer boards and agencies made it possible to fund research teams across the country, forming the basis of a national network in palliative and end-of-life care research.
| Table 1: Partners Supporting Palliative and End-of-Life Care Research |
| Alberta Cancer Board British Columbia Cancer Agency Canadian Breast Cancer Research Alliance CIHR Institute of Aboriginal Peoples' Health CIHR Institute of Institute of Aging CIHR Institute of Cancer Research CIHR Institute of Circulatory and Respiratory Health CIHR Institute of Gender and Health CIHR Institute of Health Services and Policy Research CIHR Institute of Human Development, Child and Youth Health CIHR Institute of Neurosciences, Mental Health and Addiction CIHR Knowledge Translation Branch CancerCare Manitoba Health Canada Heart and Stroke Foundation of Canada National Ovarian Cancer Association National Cancer Institute of Canada |
The funded projects are listed in Appendix 1. The following five NET project descriptions provide an insight into the diversity of the research topics and the wide geographical distribution of funded teams:
To support continued growth in palliative and end-of-life care research, and in response to a growing need within the research community, CIHR recently announced the creation of a new peer review committee that will evaluate all operating grant applications within the area of palliative and end-of-life care. Until now such applications have been reviewed by various other committees. It is anticipated that interest in palliative and end-of-life care research will continue to grow, and that the creation of a dedicated, multidisciplinary committee will better serve the needs of this growing scientific community.
The mandate of this committee will include:
The committee will also review proposals that address critical evaluation of ethical, legal, economic and moral issues pertaining to the utilization of health care resources and quality of care.
ICR and partners are now exploring opportunities for international partnerships in palliative and end-of-life care research to build a truly international, multidisciplinary research network.
Palliative and End-of-Life Care: Five-Year New Emerging Team Grants
| Principal Investigators | Institution Name | Project Title |
|---|---|---|
| Allard, Pierre | Elizabeth Bruyère Research Institute, Ottawa | Optimizing end-of-life care for seniors |
| Baracos, Vickie E | University of Alberta | New Emerging Teams (NETs) in palliative care: Cancer-associated cachexia-anorexia syndrome |
| Chochinov, Harvey M; Stienstra, Deborah A | University of Manitoba | End of life care and vulnerable populations |
|
Doll, Richard; |
British Columbia Cancer Agency (Vancouver) | Palliative care in cross-cultural context: A NET for equitable and quality cancer care for ethnically diverse populations |
| Gagnon, Pierre R | Université Laval | Developing, evaluating and implementing new interventions in palliative care |
| Hagen, Neil A; Fainsinger, Robin; Brasher, Penelope | University of Calgary | A multidisciplinary cancer pain research network to improve the classification, assessment, and management of difficult cancer pain problems |
| Heyland, Daren K | Kingston General Hospital (Ontario) | Understanding and improving communication and decision-making at the end of life |
| Kirk, Peter; Lau, Francis | Royal Jubilee Hospital (Victoria, UK) | Overcoming barriers to communication through end of life and palliative transitions |
| Siden, Harold B | University of British Columbia | Transitions in pediatric palliative and end of life care |
| Stajduhar, Kelli; Cohen,S.R. | University of Victoria (British Columbia) | Family caregiving in palliative and end-of-life care: A new emerging team |
Palliative and End-of-Life Care: Six-Year Strategic Training Program Grant
| Principal Investigators | Institution Name | Project Title |
|---|---|---|
| Robin S. Cohen | McGill University | Palliative Care Cancer Research |
Palliative and End-of-Life Care: One-Year Career Transition Award
| Principal Investigators | Institution Name | Project Title |
|---|---|---|
| Wismer, Wendy V | McGill University | Dietary patterns, perceptions of food and motivation to eat in palliative care cancer patients |
Palliative and End-of-Life Care: One-Year Pilot Project Grants
| Principal Investigators | Institution Name | Project Title |
|---|---|---|
| Alibhai, Shabbir M | University Health Network (Toronto) | A pilot study to evaluate quality of life in patients age 60 or older with newly diagnosed acute myeloid leukaemia |
| Aubin, Michèle | Université Laval | Évaluation d'un programme de soulagement de la douleur chez les personnes âgées en perte grave d'autonomie vivant en milieu de soins de longue durée: projet pilote |
| Baracos, Vickie E | University of Alberta | Nutritional supportive care: amino acids required to support maintenance and deposition of lean body mass in patients with advanced cancer |
| Barbera, Lisa | Sunnybrook and Women's College Health Sciences Ctr | Palliative and end-of-life quality indicators in lung cancer |
| Duggleby, Wendy | University of Saskatchewan | A pilot study of the hope focused program for informal caregivers of palliative home care patients |
| Fassbender, Konrad | Alberta Cancer Board (Edmonton) | Patterns and predictors of palliative care service utilization |
| Gagnon, Bruno | McGill University | Characterizing cognitive failure, physical retardation and hypo-active delirium in advanced cancer patients, a pilot project |
| Grunfeld, Eva | Dalhousie University (Nova Scotia) | Quality indicators for end-of life breast cancer care: testing the use of administrative databases in two provinces |
| Grunfeld, Eva | Dalhousie University (Nova Scotia) | Quality indicators for end-of-life breast cancer care: is there agreement between stakeholder groups in two provinces? |
| Hampton, Mary R | University of Regina (Saskatchewan) | Developing and piloting cross-cultural curriculum for delivery and utilization of end of life health care services |
| Kiceniuk, Deborah S | Dalhousie University (Nova Scotia) | An examination of end-of-life health care costs in Nova Scotia |
| Leis, Anne M | University of Saskatchewan | Prevalence of palliative patients and their health services utilization in Saskatchewan: A feasibility study |
| Schondorf, Ronald | Sir Mortimer B. David Jewish General Hospital, Montreal | Does autonomic nervous system dysfunction contribute to the morbidity of patients with advanced gastrointestinal and non small cell lung cancer? A pilot study |
| Simpson, John Steven A | University of Calgary | A pilot project to assess the impact of a novel psychosocial intervention on the quality of life, attitudes to death and dying, and spirituality of palliative cancer patients |
| Vigano, Antonio A | McGill University | Prognostic value of the angiotensin-converting enzyme gene polymorphism in advanced cancer: A pilot study |
| Viola, Raymond A | Queen's University (Kingston, Ontario) | Community palliative cancer care - A pilot study using linked databases |
| Ward-Griffin, Mary C | University of Western Ontario | Exploring client-family-nurse relationships in home-based palliative care for seniors |
| Widger, Kimberley A | IWK Health Centre (Halifax) | Pediatric palliative care surveillance pilot project |
| Wing, Simon | McGill University | Role of lysosomal proteolysis in mediating the muscle wasting of cachexia |
