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

Elaine Wiersma,Mary Lou Kelley,Jessica Mcanulty,Jill Marcella

doi:10.1017/s0714980818000624

Elaine Wiersma, Mary Lou Kelley + Show 2 more

Open Access

https://doi.org/10.1017/s0714980818000624

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Abstract

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.

Highlights

The 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
Using concepts drawn from existing literature on nursing ethics to frame this work, we have attempted to elucidate the moral concerns for nonregistered staff in long-term care (LTC) settings, by examining the moral concerns experienced in LTC environments by the direct care workers who provide day-to-day care for residents, especially care at the end of life
personal support workers (PSWs) experienced moral concerns in their work, which can be characterized as everyday moral dilemmas, in providing palliative care to residents in LTC homes

Summary

Background

The literature on the moral and ethical concerns of health care providers typically focuses on various registered health professionals and dilemmas experienced in acute and primary care (Corley, 1995; Corley, Minick, Elswick, & Jacobs, 2005). Pijl-Zieber et al (2008) suggested that moral distress may be a problem for nurses working in LTC environments, it may be an issue for many other staff working in LTC homes who face these same issues of human resource constraints, competing value systems, competing demands, and the lack of managerial and administrative support These factors may impact the PSWs who deliver the majority of care for residents in LTC homes. The hierarchical structure is still present (Diamond, 1992; Foner, 1995), registered nurses, who often have supervisory roles, are not the most common front-line staff in LTC homes Direct care workers such as PSWs provide most of the direct care to residents, including bathing and assisting individuals to perform activities of daily living such as dressing or eating. We used these data to provide an in-depth analysis of PSWs’ perspectives on their moral concerns regarding palliative care provision to LTC residents

Methodology

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