'That just breaks my heart': Moral Concerns of Direct Care Workers Providing Palliative Care in LTC Homes.

ABSTRACTThe literature on ethics in health care that explores the moral concerns of care providers typically focuses on registered health professionals and ethical dilemmas in acute and primary care. Far less attention has been paid to the long-term care (LTC) environment and non-registered, direct care workers. To address this gap, this research examined the moral concerns of personal support workers (PSWs) who provide direct care to residents. Data were collected during a 5-year participatory action research project to formalize palliative care programs in LTC homes. Eleven focus groups explored PSWs' experiences providing palliative care in LTC homes, their challenges and learning needs (n = 45). In-depth secondary analysis of these focus groups found that PSWs experienced moral dilemmas. Two main moral dilemmas were ensuring that residents don't die alone; and providing the appropriate care based on residents' wishes. Their organizational constraints coalesced around policies, hierarchy, time, and balancing residents' needs.

Measuring Family Members' Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire.

RATIONALE: Improving end-of-life care (EOLC) in long-term care (LTC) homes requires quality measurement tools that assess families' satisfaction with care. This research adapted and pilot-tested an EOLC satisfaction measure (Canadian Health Care Evaluation Project (CANHELP) Lite Questionnaire) for use in LTC to measure families' perceptions of the EOLC experience and to be self-administered. METHODS AND RESULTS: Phase 1. A literature review identified key domains of satisfaction with EOLC in LTC, and original survey items were assessed for inclusiveness and relevance. Items were modified, and one item was added. PHASE 2: The revised questionnaire was administered to 118 LTC family members and cognitive interviews were conducted. Further modifications were made including reformatting to be self-administered. PHASE 3: The new instrument was pilot-tested with 134 family members. Importance ratings indicated good content and face validity. Cronbach's alpha coefficients (range: .88-.94) indicated internal consistency. CONCLUSION: This research adapted and pilot-tested the CANHELP for use in LTC. This paper introduces the new, valid, internally consistent, self-administered tool (CANHELP Lite Family Caregiver LTC) that can be used to measure families' perceptions of and satisfaction with EOLC. Future research should further validate the instrument and test its usefulness for quality improvement and care planning.

WA22†"it's hard to watch people die for a living": embedding the palliative approach into the organisational culture of long term care homes using participatory action research.

BACKGROUND: Long term care homes (LTC) in Canada have become a major location of death with 20% or more residents dying each year. Given the increasing age and frailty of residents, this is soon expected to increase to 40%. LTC has struggled to incorporate care of the dying into their day to day practice and culture because death is often absent from formalised policy and protocols. AIM: This workshop will share resources created during a 5 year participatory action research project in Ontario, Canada that aimed to improve the quality of life of people who were dying in long term care homes. METHODS: Through staff participation and empowerment, a process of organisational capacity development was undertaken. An extensive needs assessment was followed by creating an interprofessional palliative care resource team within each home. This team assessed the assets and gaps in their home and guided development of education, policy and clinical practices to address needs. Community partners with expertise in palliative care were engaged to support staff. RESULTS: A framework for palliative care in LTC integrates the palliative approach into the residents' journey from admission to death. Resources for organisational change were developed and organised into a toolkit that is unique to the LTC setting and context, and can be accessed at www.palliativealliance.ca CONCLUSION: The Quality Palliative Care in Long term Care Toolkit is the first of its kind in Canada. The toolkit can guide LTC management and staff through a process of culture change to incorporate a palliative approach to care.