End-of-life communication in nursing homes: Experiences of bereaved of people with dementia

Abstract

Background: Most people with dementia die in nursing homes or other long-term care facilities. End-of-life communication, which involves shared decision-making and Advance Care Planning (ACP), constitutes the basis for good care. Good communication has been identified as one of the most important aspects of end-of-life care that is correlated with the quality of dying. Therefore, end-of-life communication experiences might influence the quality of dying as experienced by the bereaved. Aim: To explore the experiences of the bereaved of people with dementia with regard to end-of-life communication given by professional caregivers in nursing homes. Method: In-depth, semi-structured interviews were conducted between February 2018 and April 2018 with a purposeful sample of twelve bereaved of people with dementia who had died in nursing homes within the last nine months. The interviews explored communications during the final three months of life regarding end-of-life wishes, informing and supporting loved ones and interactions with residents. Data were analyzed using thematic analysis methods. Results: The results highlight the need for tailored end-of-life communication for people with dementia and their loved ones. Key themes include 1) Making contact, 2) Being sufficiently informed, 3) Supporting loved ones, 4) Challenges as proxy decision makers and 5) Starting the conversation about the end-of-life. Conclusions: This study uncovers both positive and negative experiences with end-of-life communications of the bereaved of people with dementia. The bereaved articulated the need to be sufficiently informed and involved regarding care decisions, prognoses and palliative care. Recommendations: Caregivers must start timely the conversation with residents and their loved ones about their wishes regarding care and the end-of-life. Further research should focus on the insufficient information about dementia and palliative care for residents’ loved ones.