Baseline Findings – SPA-LTC Project
Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) Project is a multi-component, palliative care framework that aims to improve the integration of palliative care in long-term care (LTC) homes. To date, this framework has been implemented through research in eight LTC homes across Canada located in Ontario, Manitoba, Saskatchewan and Alberta. This arm of the project is funded by the Canadian Institutes of Health Research, The Ontario Ministry of Health and Long Term Care, Extendicare, Saskatchewan Health Research Foundation, Research Manitoba, and Alberta Innovates Health Solutions. For more information about our project, please visit the Canadian Hospice Palliative Care Association.
Researchers’ have completed their baseline data collection and a series of manuscripts were submitted to peer-reviewed journals. This research describes LTC as an end-of-life setting, and evaluates SPA-LTC components. It will inform the direction of the SPA-LTC Project, as researchers’ continue to implement interventions to better support older adults living in LTC homes in Canada.
This exchange article highlights key findings from their baseline data in four LTC homes and includes the perspectives of residents, families, and staff. Researchers’ also address organizational considerations for LTC when implementing a palliative approach to care.
Resident and Family Members Perspectives
Meeting the psychosocial needs of LTC residents and their family members is a central component of providing holistic, patient-, and family-centered end-of-life care. Several Canadian studies have noted the importance of meeting such needs in LTC facilities, and have explored what these needs look like in practice.
Team Leads, Abigail Wickson-Griffiths and Genevieve Thompson, studied the experiences of family members whose relative had died in the four study LTC settings within the past year. Bereaved participants identified several factors as being important components of end-of-life care to their relative. These included informational needs (such as resources and conversations about advance care planning and bereavement), and additional support for families, including bereavement care. Another imperative consideration for many family members of residents in LTC homes was the importance of their relative maintaining human connection in the LTC home setting; a sentiment that manifested as the view that no resident should die alone. While this view was similarly held by many staff members, residents had mixed feelings about the possibilities of being alone at the time of death.
Families also identified the compassion of LTC staff as essential to end-of-life care, noting that their caring actions, level of communication, and communication style made a difference to the family experience of quality end-of-life care.
Staff Perspectives
LTC staff play an essential role in the provision of end-of-life care, and are an important source of support for residents within the SPA-LTC model. Research conducted by Team Lead, Paulette Hunter, explores the experiences of staff in LTC homes.
The challenges faced by LTC staff are also important to understand in the context of end-of-life care. The Researchers’ team explored the readiness of LTC staff to engage in palliative care by considering levels of burnout, self-efficacy for palliative care, and self-reported person-centred care. Encouragingly, most (99%) LTC staff were not suffering burnout. Nevertheless, self-efficacy for palliative care and self-reported person-centred care were at moderate levels, with direct care staff feeling less efficacious. Encouraging a palliative approach to LTC has potential to improve self-efficacy and person-centred care.
Compassion among LTC staff is an essential element of providing patient-centered care in LTC home settings. This study was led by Co-Investigator, Shane Sinclair, in collaboration with Team Lead Lorraine Venturato at the University of Calgary. In addition to validating the Patient Compassion Model in an LTC setting, expressions and experiences of compassion vary by health care providers, patient, and the organizational culture and clinical milieu that compassionate care is provided. While patients desired to receive compassion and the vast majority of health care providers desired to provide it, there were also a number of challenges to the successful transmission of compassion that may have undermined these intentions (workload, wages, and benefits, deferring accountability of and responsibility for a lack of compassion to others, over-confidence in one’s ability to be compassionate, etc.).
For staff working with residents with dementia, a study by Team Lead, Lynn McCleary at Brock University, found that health care aides form close relationships with residents over long periods of time. This gives them intimate knowledge of the resident and a heightened ability to interpret their behaviour. These close relationships are important for overcoming communication challenges associated with dementia, identifying pain, and providing person-centred care at the end of life. Staff and relatives identified needs for bereavement support for residents with dementia when other residents died.
Organizational Factors
In a scoping review of palliative models of care within LTC homes, the SPA-LTC Project’s Principal Investigators, Sharon Kaasalainen and Tamara Sussman, found that the Canadian SPA-LTC model is highly endorsed by stakeholders, including LTC staff, researchers in the field, and decision makers. This study also explored LTC staff members’ perceptions of the palliative model with a stakeholder assessment of the palliative program’s desirability, suitability, and feasibility within LTC homes. One realization was that it is currently challenging for LTC homes to support advance care planning in a timely fashion. LTC homes need feasible ways to support the discussion of needs, values, and preferences for end-of-life care. This finding is echoed by Team Lead Lynn McCleary in her study of residents and family members with dementia, which emphasized the importance of including end-of-life care conversations at the beginning of a resident’s admission into an LTC home.
Conclusion
Research conducted with LTC residents, their family members, and staff have provided important information on how to best promote person-centered end-of-life care in Canadian LTC settings. The SPA-LTC project continues to explore how best to meet the needs of all stakeholders in LTC settings in Canada, an important step towards providing the best possible ca