Abstract
BackgroundMost people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice.MethodsAn ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals.ResultsFour major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end–of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions.ConclusionsThe Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.
Highlights
Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches
Rationale and aim In this study, we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice
We report observations noted by an Interdisciplinary Care Leader (ICL) embedded in two nursing homes (NH) to implement the Compassion Intervention, the ‘Intervention’ [37]
Summary
Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice. Benefits of EOL care discussions A systematic review of research conducted mostly in the USA in hospital and nursing home settings showed that when EOL discussions occurred, the person dying with dementia experienced fewer aggressive and unnecessary medical interventions [13]. Those with a documented Advance Care Plan (ACP) had fewer calls to emergency services, hospital admissions, bed days and costs [14, 15]. Discussing EOL care may result in fewer burdensome interventions in nursing homes for residents with cognitive impairment [15, 16]
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