Danielle Just is a second year doctoral student at the University of Toronto, studying under the supervision of Dr. Lisa Cranley. Danielle is enrolled in the Nursing Health Systems cohort of the Lawrence S. Bloomberg Faculty of Nursing in combination with the Institute for Life Course and Aging’s Collaborative Program (Ph.D.) in Aging, Palliative and Supportive Care Across the Life Course. Danielle’s research interest is in exploring the role of the personal support worker in providing palliative care and end-of-life care in long-term care homes to improve the quality of life and quality of care for long-term care residents. Danielle is an active and dedicated member of the ageing research community. She is a research assistant for Dr. Lisa Cranley on a two year feasibility study, funded by the Canadian Institutes of Health Research to explore the development and assessment of a sustainable shared decision-making strategy to engage residents of long-term care facilities. Additionally Danielle is a research associate for Dr. Sharon Kaasalainen at McMaster University, on the mySupport Family Carer Decision Support Study, funded by the Joint Programme Neurodegenerative Disease Research. Danielle strongly believes in interdisciplinary education and research as her academic background is grounded in Health Policy and Kinesiology.
The in-role and extra-role behaviours personal support workers perform when providing end-of-life care to dying residents in long-term care
Danielle Taylor Just, University of Toronto
Background: Long-term care homes (LTCHs) have become the place of death for an increasing number of older adults. This increase is attributed to a growing population of older adults, living with multiple chronic conditions, in advanced stages of illness and with higher care needs.
Canadian research investigating the quality of care at death in LTCHs has reported poor and inadequate end-of-life care. This circumstance extends beyond the Canadian context, as the world’s leading nations in palliative and end-of-life care have reported poor quality end-of-life care in LTCHs. Furthermore, several international studies have identified concerns with the capacity of LTCHs to provide end-of-life care.
Recent literature has identified inadequate end-of-life care in LTCHs, reporting personal support workers’ (PSWs) knowledge in end-of-life care as a primary barrier. PSWs represent 60-70% of the LTCH workforce and provide 80% of the direct care to residents. While previous research has produced recommendations for further end-of-life care education for PSWs, limited research has focused on defining the role of PSWs in end-of-life care.
Purpose: The purpose of this scoping review was to explore PSWs perspective of their role in end-of-life care in LTCHs, with the objectives of describing the in-role and extra-role behaviours PSWs perform when providing end-of-life care, and expanding the definition of end-of-life care.
Methods: A scoping review was conducted using the peaceful end-of-life theory to analyze and synthesize key findings. Five scholarly databases and the grey literature were searched for relevant articles. Search concepts included end-of-life care and PSWs. Articles were included in this review if they explored PSWs experiences and perspectives of providing end-of-life care in LTCHs.
Results: 230 articles were identified, and 15 articles were included in this scoping review. Included articles were published in Canada, the United States of America, Sweden, the United Kingdom, and New Zealand. The in-role and extra-role behaviours PSWs perform when providing end-of-life care in LTCHs were identified. In-role behaviours included: Providing psychosocial support, knowing the resident’s care wishes, and providing physical care. Extra-role behaviours included: becoming emotionally involved with the dying resident, acting as extended family, and ensuring residents do not die alone.
Conclusions: Findings from this review expanded the concept of end-of-life care by illustrating the extra-role behaviours PSWs perform as part of their role in end-of-life care. Key findings from this review highlighted the relationship between dying residents and PSWs, and the impact this relationship has on the quality of end-of-life care provided.