Beyond Patient-Provider Relationships: Expanding the Roles and Boundaries of Families during Patient End-of-Life

Abstract

Role conflict and strain occur when healthcare providers are required to cross boundaries, either voluntarily or involuntarily, to meet the needs of their dying patients. This research is an unobtrusive digital ethnography of a publicly accessible online forum for healthcare providers ( N = 242 posts); it explores the boundaries set by families and healthcare providers, and identifies how healthcare providers navigate and which circumstances require them to sometimes cross these professional boundaries. Results indicate that patient-and-family-centered care may not be fully achieved due to the ambiguity in the expected roles played by both families and healthcare providers during patient death and dying. Grounded in data, an expanded model of the therapeutic alliance, which includes the family, is suggested.

‘I wasn't made to feel like a nut case after all’: A qualitative story completion study exploring healthcare recipient and carer perceptions of good professional caregiving relationships

“…The second issue concerns whether and how the role of informal carers is conceptualised within professional caregiving relationships. Despite increased recognition that these relationships occur within complex care networks involving multiple stakeholders, 14 , 33 , 34 conceptual models and measurement and intervention approaches often view relationships as dyadic (e.g., provider–recipient or provider–carer only) (for similar arguments, see 18 , 21 , 32 , 35 , 36 , 37 ). The relationships occurring between healthcare providers, recipients and carers are studied in some contexts (e.g., dementia care 38 ) but not others, 35 and there is little consistency in whether and how carers are and should be engaged as partners in care delivery.…”