How Family Members View Resident Comfort at End-of-Life in Long-Term Care: Implications for Social Work Practice

Background and Purpose: Quality end-of-life care is critical for dying patients and their family caregivers whose experiences with ‘good’ end-of life resident care can contribute to positive bereavement. While strategies and best practices to support resident comfort at end of life in long-term care (LTC) are beginning to emerge research rarely considers those factors associated with family/friends’ perceptions of a ‘good’ resident death. To address this gap in the literature and inform social work practice within LTC this study explored service factors associated with caregivers’ perceptions of resident comfort at end-of-life care.  

Methods: This study used a cross-sectional survey design. A survey packet was mailed to a total of 77 participants. 34 participants whose relative or friend died in one of four LTC homes in Canada within a one year period completed self-administered two measures on their experiences with end-of-life care in LTC: the Comfort Assessment in Dying with Dementia Scale (FPCS), and the Family Perceptions of End of Life Care (CAD-EOLD) scale. Participants also completed a series of demographic questions and responded to some open-ended questions. Descriptive and bivariate analyses were generated to identify common areas of concern for caregivers and to examine service factors associated with resident comfort at end-of-life.

Results: The majority of caregivers were female (73%), adult children (74 %) between 45-64 years of age (44%) and supporting relatives in LTC for 9 years. Caregivers’ perceptions of resident comfort at end-of-life were generally positive with most caregivers reporting good attention to resident care needs (M=62.0, α=0.93) support to family/friends (M=30.0, α=0.87) strong communication (M=35.0, α=0.92) and access to private and comforting physical spaces (M=11.4, α=0.92). Importantly bivariate analyses revealed that staff-family communication (r=-.403, p=.022) was critical in supporting positive perceptions of resident comfort at end-of-life. Open-ended comments affirmed that clear, up-to date and frequent information about resident status was highly valued by family/friends when end-of life was near.

Conclusions and Implications: The findings of the study identify the critical role social workers may play in supporting family/friends experiences with resident end-of-life care LTC. More specifically by keeping families informed and paying attention to their emotional needs, social workers can enhance family members’ perceptions of a calm and peaceful resident death and potentially reduce the risk of complicated bereavement.