Principal Investigators:

S. Kaasalainen  and T.Sussman


Residents living and dying in long term care (LTC) homes represent one of society's most frail and marginalized populations of older adults. As the population ages, more people will die in LTC homes. In Canada, currently 27% of residents die in LTC, and this rate will rise to 39% by the year 2020. Similar trends have been noted from other countries including the United States, the United Kingdom, and Australia. Despite these growing rates, research has shown that palliative care is suboptimal in LTC; with pain and other symptoms being poorly managed, lack of attention given to advance care planning, and issues of loss, grief and bereavement, widespread use of feeding tubes, and excessive reliance on hospitalizations. Clearly, palliative care for residents in LTC and their family members is inadequate and requires attention. Given the growing demand for palliative care principles within LTC, and the increased awareness of service inadequacies frameworks to guide the implementation of palliative care practices within long-term care have begun to emerge.  Research suggest that refining tools to help organizations identify palliative care challenges, implementing mechanisms to assist with the identification of palliative care issues; developing opportunities for education and case sharing and improving staff's capacity to communicate with families and residents are core elements of any palliative care initiative within LTC. Further, developing palliative care champion (resource) teams and using participatory research approaches appear to support implementation and sustainability.  


The main objective of this proposed research is to adapt, implement and evaluate a palliative care program that supports staff's capacity to (a) identify key transition points along the living-dying continuum; (b) activate critical communication with families and other members of the interdisciplinary team, (c) relieve resident suffering, and (d) attend to issues of loss and grief. 


Methods: Guided by a participatory action research approach, this study will use a mixed method (qualitative and quantitative) multiple case study design to address the study objectives. This study will be conducted in four separate LTC homes in southern Ontario which represent the mix of contexts found in LTC homes across Canada. The proposed  intervention is a culmination of many projects and is comprised of four  main components: (a) development of an onsite Interdisciplinary Palliative Care Champion Team;  (b)  two  Family Care Conferences (one two weeks post admission and when need for palliative end-of life care planning is identified); (c) Comfort Care Rounds with staff (and where applicable family); (d) implementing the Palliative Performance Scale (PPS) as one trigger for end-of-life discussions; and, (e) providing post-bereavement follow-up. We will collect data before the intervention, during the intervention, and after the intervention.  


Significance: The findings of this study have the potential to improve the quality of life of older adults living and dying in LTC and provide better support to their families. Given the growing aging population living and dying in this complex health environment, the proposed study promises to offer valuable information on implementation processes, clinical and administrative tools, and educational materials that will inform how qualified health professionals and decision-makers can improve the delivery of palliative care in LTC globally. 


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