Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers.

BACKGROUND: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time. AIM: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers-and if, when, how, and why these experiences change over time. DESIGN: A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants. SETTING/PARTICIPANTS: Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period. RESULTS: All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future. CONCLUSION: This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals' thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers.

Support from healthcare professionals in empowering family carers to discuss advance care planning: A population-based survey.

BACKGROUND: Family carers have a prominent role in end-of-life care for seriously ill persons. However, most of the advance care planning literature is focused on the role of healthcare professionals. AIMS: To investigate (1) what proportion of family carers discussed advance care planning with their relative and associated socio-demographic and clinical characteristics (2) what proportion received support from healthcare professionals for these conversations, (3) what type of support they received and (4) to what extent the type of support received was considered sufficient. DESIGN/PARTICIPANTS: Population-based cross-sectional survey in Belgium of bereaved family carers of persons with a serious chronic illness (N = 3000) who died 2-6 months before the sample was drawn, identified through three sickness funds. The survey explored support from healthcare professionals for family carers during the last 3 months of the patient's life. RESULTS: Response rate was 55%. The proportion of family carers that engaged in an advance care planning conversation with their relative was 46.9%. Of these family carers, 78.1% received support from a healthcare professional, mostly by doing the advance care planning conversation together (53.8%). Of family carers receiving support from a healthcare professional, 57.4% deemed the support sufficient. CONCLUSION: Many family carers engage in advance care planning conversations with their dying relative. Healthcare professionals often support them by performing the advance care planning conversations together. More insight into how family carers can be supported to conduct these advance care planning conversations, both with and without involvement of healthcare professionals, is necessary.

Are family carers part of the care team providing end-of-life care? A qualitative interview study on the collaboration between family and professional carers.

BACKGROUND: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context. AIM: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life. DESIGN: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data. SETTING/PARTICIPANTS: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness. RESULTS: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes. CONCLUSIONS: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.

Advance care planning in amyotrophic lateral sclerosis (ALS): study protocol for a qualitative longitudinal study with persons with ALS and their family carers.

INTRODUCTION: Amyotrophic lateral sclerosis (ALS) is an incurable motor neuron degenerative disease that has rapid progression and is associated with cognitive impairment. For people with ALS (pALS) and their family carers, advance care planning (ACP) is beneficial, as it can lead to feelings of control/relief and refusal of unwanted treatments. However, evidence concerning the experiences and preferences regarding ACP of pALS and their family carers, especially when their symptoms progress, is scarce. This article describes the protocol for a qualitative longitudinal study that aims to explore: (1) the experiences with ACP and the preferences for future care and treatment of pALS and their family carers and (2) how these experiences and preferences change over time. METHODS AND ANALYSIS: A qualitative, longitudinal, multiperspective design. A total of eight to nine dyads (pALS and their family carers) will be recruited, and semistructured interviews administered every 3 months over a 9-month period. Qualitative longitudinal analysis involves content analysis via in-depth reading, followed by a two-step timeline method to describe changes in experiences and preferences within and across participants. ETHICS AND DISSEMINATION: This protocol has been approved by the central ethical committee of the University Hospital of Brussels, and local ethical committees of the other participating hospitals (B.U.N. B1432020000128). The results will be disseminated via the research group's (endoflifecare.be) website, social media and newsletter and via presentations at national and international scientific conferences.

Quality of end-of-life nursing home care in dementia: relatives' perceptions.

OBJECTIVES: Only a few studies have investigated the quality of end-of-life care provided to nursing home residents with dementia as perceived by their relatives. We aim to investigate the quality of end-of-life care as perceived by relatives and to investigate which characteristics of nursing home residents with dementia, their relatives and the care they received are associated with the evaluation the quality of end-of-life care as perceived by the relatives. METHODS: Data used were from two cross-sectional studies performed in Flanders in 2010 and 2015. Questionnaires were sent to bereaved relatives of nursing home residents with dementia and 208 questionnaires were returned. The quality of end-of-life care as perceived by the relatives was measured with the End-of-Life with Dementia-Satisfaction With Care scale (scores ranging 10-40). RESULTS: In total, 208 (response rate2010: 51.05%, response rate2015=60.65%) bereaved relatives responded to the questionnaire. The quality of end-of-life care as perceived by them was positively associated with the nursing home resident being male (b=1.78, p<0.05), relatives receiving information on palliative care (b=2.92, p<0.01) and relatives receiving information about medical care from care providers (b=2.22, p<0.01). CONCLUSION: This study suggests that relatives need to be well informed about palliative and medical care. Future end-of-life care interventions in nursing homes should focus on how to increase the information exchange and communication between nursing home staff and relatives.

Advance care planning-family carer psychological distress and involvement in decision making: the ACTION trial.

OBJECTIVES: Facilitated advance care planning (ACP) helps family carers' to be aware of patient preferences. It can improve family carers' involvement in decision making and their overall experiences at the end of life, as well as, reduce psychological stress. We investigated the effects of the ACTION Respecting Choices (RC) ACP intervention on the family carers' involvement in decision making in the last 3 months of the patients' life and on the family carers' psychological distress after 3 months of bereavement. METHODS: Over six European countries, a sample of 162 bereaved family carers returned a bereavement questionnaire. Involvement in decision making was measured with a single item of the Views of Informal Carers-Evaluation of Services Short Form questionnaire. Psychological distress was measured with the Impact of Event Scale (IES). RESULTS: No significant effect was found on family carers involvement in decision making in the last 3 months of the patients' life (95% CI 0.449 to 4.097). However, the probability of involvement in decision making was slightly higher in the intervention arm of the study (89.6% vs 86.7%; OR=1.357). Overall, no statistical difference was found between intervention and control group regarding the IES (M=34.1 (1.7) vs 31.8 (1.5); (95% CI -2.2 to 6.8)). CONCLUSION: The ACTION RC ACP intervention showed no significant effect on family carers' involvement in decision making or on subsequent psychological distress. More research is needed about (1) how family carers can be actively involved in ACP-conversations and (2) how to prepare family carers on their role in decision making. TRIAL REGISTRATION NUMBER: International Standard Randomised Controlled Trial Number ISRCTN17231.