Objective:The goal of this review is to analyse articles on the experience of surrogates who find themselves making end-of-life decisions for a relative with a major neurocognitive disorder in a nursing home.Design: An integrative review of the literature based on Whittemore and Knafl's method.Data sources: This review used the CINAHL, PubMed, PsycInfo, Embase and Web of Science databases. A complementary search was also conducted via citation pearl searching, and the reference lists from the selected articles were manually verified. Review method:The quality of the selected articles was assessed using the Crow Critical Appraisal Tool, and the data were extracted systematically and were then organised according to Mishel's uncertainty in illness theory. The data that did not correspond to any concept of the theory were excluded at this stage. Analysis was conducted using the method put forward by Miles, Huberman and Saldaña.Results: A total of 18 articles were selected: 11 qualitative, 5 quantitative and 1 using a mixed method, as well as 1 ethical argument. The subjects arising from the analysis of the articles were the types of decisions made, the support available for the surrogates, the role and involvement of the surrogates in the process and the factors that influence the decisions. Conclusion: The results of this integrative review stimulate reflection on the needs of family members involved in making decisions, as well as on the nursing practice and research. Published literature is mainly from North America, and thus, more research is needed to better understand the impact of cultural and ethnic differences in the process, which was poorly covered by the existing literature. Also, exploring nurses' involvement in supporting surrogates may eventually better equip nurses for their interventions with surrogates. Implications for practice: Describing the illness progression and the signification of palliative care to the resident with a NCD and their surrogate decision makers, as well as discussing end-of-life care preferences as early as possible are all nursing 2 of 15 |

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Background: Amyotrophic lateral sclerosis (ALS) is currently an incurable and fatal disease, which often comes with a high symptom burden at the end-of-life stage. Little is known about nurses’ experiences in this context. Objective: To explore the experience of nurses caring for people with ALS at end-of-life. Design: A qualitative multiple-case study design. Method: Individual semi-structured interviews were conducted between February and August 2022 with nurses from Quebec, Canada, who had provided care to at least one person living with ALS at the end-of-life in the past 12 months. The content analysis method was used for data analysis and within-case and cross-case analyses were conducted, as well as comparative analyses according to the type of position held by the participants that determined the cases: (1) home care, (2) hospital and (3) palliative care home. Results: Participating in the study were 24 nurses: 9 were from home care, 8 from hospitals and 7 from palliative care homes. Five main themes were identified: (1) identifying the end-of-life period, (2) communication issues, (3) supporting the need for control, (4) accompanying in the fight culture and (5) the extent of the need for care. A sixth theme was also added in order to report the need expressed by nurses to improve their care of patients living with ALS at end-of-life. Conclusions: Although nurses’ experiences varied among the different settings, the study identifies the pressing need for better education and, above all, more resources when caring for a person living with ALS at end-of-life. Future research should explore the experiences of other members of the healthcare team and test interventions designed to improve the quality of life and end-of-life of people living with ALS.

Background Relatives of an older person living in a long-term care home with advanced-stage dementia must often make important and difficult decisions, including ones that impact the resident’s end-of-life. Healthcare professionals must support them in this decision-making process. The aim of this study was to propose a theory on nurses’ support of relatives who make end-of-life decisions for a resident living with dementia in a long-term care home. Method A constructivist grounded theory approach was used, with a theoretical sample of nine nurses and 10 relatives whom we met for face-to-face interviews. Three documents on end-of-life care, which were available in the study setting, were also included. The analysis was carried out using the method proposed by Charmaz. Findings The findings highlight the importance of building a strong and trusting relationship between nurses and relatives. Furthermore, exploring the refusal of palliative or end-of-life care, supporting relatives’ need to witness firsthand the condition of the person living with dementia, and education at a “good” time are useful interventions that nurses can make to support relatives’ decision-making. Conclusion Better support of relatives in end-of-life decision-making improves the well-being of relatives and older people living with dementia alike.