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Importance – The homeless face higher rates of morbidity and mortality than the general population, and have lower rates of end-of-life care planning. An effective and sustainable intervention, to provide living wills and durable power of attorney, is required to protect the autonomy of a vulnerable population. Objective – To determine if medical student-led 1:1 counseling is as effective as social worker-led counseling as reported in the literature, determined by rate of advanced directive completion. Design – A focus groups and educational sessions on EOL care and ADs were conducted at 2 shelters, after which participants were offered the opportunity to sign up for a 1:1 counseling session with a medical student volunteer. Rates of sign-ups and completion were recorded. Setting – 2 North Philadelphia homeless shelters, requiring either an Axis I or current substance abuse diagnosis for residence. Participants – A convenience sample of 20 homeless men were approached; 10 enrolled in the study. Interventions – Educational sessions, focus groups, and 1:1 AD completion counseling sessions Main Outcomes – Interest in and completion of an advanced directive. Results – 9 participants signed up to complete ADs after an informational session. At the conclusion of the study, 8 of them (88.8%) completed ADs. 40% of the total participants completed an AD. Conclusions – Similar rates of advanced directive completion were achieved with the student-led intervention compared to a previous intervention in the literature. Further study with a larger sample including homeless women should be conducted to provide a generalized conclusion. / Urban Bioethics

This study focuses on understanding the experiences of bereaved South Asian family caregivers living in Canada. Findings suggest that South Asian caregivers face several challenges and that there is a need for a more culturally sensitive palliative approach to care. / The South Asian population faces several challenges when receiving palliative care, including language barriers, unawareness of resources, and poor cultural awareness among health care providers (HCP). However, little is known about the needs of South Asian family caregivers in Canada. The purpose of this study is to understand the experience of bereaved South Asian informal caregivers, who cared for a family member in their last year of life. An interpretive descriptive design was used. Eleven participants were recruited by referral through a community hospice and a community health centre. Participants were South Asian informal caregivers and at least two months bereaved. Audio-recorded one-on-one interviews were conducted followed by a thematic analysis of the transcripts. Five themes were identified to describe the experience of bereaved South Asian informal caregivers: transforming perceptions of life and death, the influence of culture on the experience; the challenges of being a caregiver; coping with the challenges of care-giving; and getting support. Caregivers expressed feeling a sense of duty to their family members and were reluctant to utilize long-term care homes or hospices. The perceived hierarchy of HCP roles also affected their experience. In reflecting on their experiences, caregivers had a deeper appreciation for life and were more willing to talk about death and dying. The experience of South Asian family caregivers is complex with several underlying cultural influences. This study has important implications in improving the delivery of culturally sensitive palliative care and developing supports that address the challenges experienced by caregivers in the South Asian community. / Thesis / Master of Science (MSc) / The South Asian community faces many challenges when receiving palliative care, including language barriers and health care providers (HCP) who do not understand the South Asian culture. However, little is known about the needs and experiences of South Asian family caregivers. In this study, South Asian caregivers of family members who recently died described their experience of being a family caregiver. Caregivers had a strong sense of duty to their family members and were against moving their family members into long-term care homes or hospices. Their understanding and views of HCPs’ roles affected their experiences. Caregivers also had more appreciation for life and wanted to talk about their wishes for their own death with their family members. The findings of this study can help improve the delivery of palliative care for the South Asian community and can help HCPs better support their South Asian patients and families.

Background. The consensus among Canadians with regards to end-of-life preferences is that with adequate support the majority prefer to live and die at home. Purpose. To compare quality indicator (QI) rates for home care clients receiving palliative and end-of-life care prior to and after the onset of the COVID-19 pandemic. Methods. A retrospective population-based cohort design was used. Sixteen QIs informed by existing literature and a preliminary set of QIs recently evaluated by a modified Delphi panel were compared. Data were obtained from the over 280-item interRAI PC instrument for Ontario home care clients for two separate cohorts: the pre-COVID (January 14th, 2019 to March 16th, 2020) and COVID cohort (March 17th, 2020 to May 18th, 2021). A propensity score analysis was used to match on 21 covariates, resulting in a sample size of 2479 unique interRAI PC assessments per cohort. Alternative propensity score methods were explored as part of a sensitivity analysis. Results. After matching the pre-COVID and COVID cohorts (using nearest neighbour matching), five of the 16 QIs had statistically-significant differences in the QI rates. The two alternative propensity score methods produced slightly different results with fewer statistically-significant differences between the cohorts. However, in examining the effect sizes, the results of all propensity score methods were found to be not clinically meaningful. High rates of the prevalence of shortness of breath with activity, no advance directives, and fatigue were observed in both cohorts and across all three propensity score methods. Discussion. This study is the first to examine differences in QI rates for home care clients receiving palliative and end-of-life care before and during COVID in Ontario. Key limitations in interpreting the results include a limited understanding of the typical variation in QI rates over time and reliance on the comparison of a single proportion (the QI) in judging potential differences in quality. Importantly, a strength of this study was that these QIs focused on outcomes of care and were mainly symptom-focused as aspects of high-quality care valued by home care clients and families and in contrast to previous studies focusing on structure and processes of care. These QIs also indicated how frequently quality concerns may be occurring for those receiving palliative and end-of-life home care. Conclusion. It appears that QI rates did not change over the course of the pandemic in this population. Future work should be directed to understanding the temporal variation in these QI rates, risk-adjusting the QI rates for further comparison among jurisdictions, provinces, and countries and in creating benchmarks to project acceptable rates of different QIs. / Thesis / Master of Science in Nursing (MSN)