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Access to quality care for people who are dying in long term care homes is growing in importance both for aging individuals and their families and the Canadian health care system.
Despite this new reality, research to support long term care homes to develop palliative care programs that support residents, staff and families at end of life has been lacking.
An international team of researchers, headed by principal investigator Dr. Mary Lou Kelley of Lakehead University (Social Work and Gerontology), has been working to address the gap in knowledge and practice by establishing the Quality Palliative Care in Long Term Care Alliance (QPC LTC Alliance).
Research funding came from the Social Sciences and Humanities Research Council (2009-2013) with support for dissemination provided by the Canadian Institutes for Health Research (2011-2012).
Residents of long-term care (LTC) homes currently represent one of society’s most frail and marginalized populations who often struggle with managing multiple chronic conditions and social isolation.
Within LTC, over 75% of residents have cognitive impairment, which creates additional challenges for providing care due to the related communication, functional, and behavioural problems that arise.
Long term care homes are now where most residents will spend the rest of their lives. Given their advanced age and frailty, it is not surprising that 45% of all Ontario long term care residents die each year.
Palliative care is a philosophy and specialized set of care processes that addresses the physical, emotional, social, psychological, spiritual and financial needs of residents of long-term care facilities and their families, and strives to provide comfort and dignity. It encompasses disease management, social and spiritual issues at end of life, issues of loss and grief, and practical end of life/death management concerns of residents and their families.
The QPC LTC Alliance research has created theoretical and practical knowledge about how to develop palliative care programs in LTC homes that are available nationally.
The research was conducted by creating the Quality Palliative Care in Long Term Alliance, composed of over 50 community partners, 30 researchers, graduate students and project staff. The project began in four long term care homes across Ontario using participatory action research (PAR): Bethammi Nursing Home, Thunder Bay; Hogarth Riverview Manor, Thunder Bay; Allandale Village, Milton; and Creek Way Village, Burlington. The long term care organizational partners have been St. Joseph’s Care Group in Thunder Bay and the Municipality of Halton. PAR has two unique features:
- Participatory means that those people and organizations that will benefit from the research also fully participate in it.
- Action means that the goal of the research is to make social change.
Through sharing of knowledge, expertise and experience, the Alliance has developed a framework for providing palliative care that consists of four major components:
- Philosophy of palliative care that promotes resident centred care and incorporates definitions for palliative care, end-of-life care, and advance care planning that are relevant to a long term care home context.
- Sample program description for long term care homes that outline goals, objectives, definitions, relevant policies and possible evaluation strategies.
- A four stage process of organizational culture change that focuses on a bottom-up approach to change and an organizational self-assessment tool.
- Tools, modules, in-service training programs and Innovations for palliative care that include topics relating to direct care (physical, psychosocial, communication), education and community partnerships.
All resources developed by the Alliance are available free of charge on the project website www.palliativealliance.ca.
Alliance researchers from Lakehead University include principal investigator Dr. Mary Lou Kelley (Social Work and Gerontology); Dr. Pat Sevean (Nursing); Dr. Jo-Ann Vis (Social Work), Dr. Michel Bedard (Health Sciences); Dr. Elaine Wiersma (Health Sciences), Dr. Marg McKee (Social Work); Dr. Peter Brink (Health Sciences); Dr. Dean Jobin-Bevans (Music); David Richards (Business); Bob Isotalo (Business); Kristen Jones (Nursing); Kathy Kortes-Miller (Education); and Susan Scott (Social Work).
National and international researchers include Dr. Sharon Kaasalainen and Dr. Carrie McAiney (McMaster University), Dr. Joanie Sims Gould (University of British Columbia) and Dr. Kevin Brazil (Queens University, Belfast). Community research partners include Paulina Chow from St. Joseph's Care Group, Thunder Bay; and Sheldon Wolfson and Janice Sheehy from Halton Region, Social & Community Service.
The Alliance also has three staff members based at the Centre for Education and Research on Aging & Health at Lakehead University who include Project Manager Jill Marcella HBSW, MSW; Knowledge Boker Jessica McAnulty BA, HBSW, MSW; and Research Assistant Jessica Koski, BSc MKTG.