H041 Experiences and perceptions of affected individuals, families, caregivers and healthcare professionals regarding end-of-life planning in Huntington’s disease: a narrative synthesis
Year: 2024
Type: conference-abstract
Abstract: Background Huntington’s disease (HD) is a rare neurological condition characterised by progressive decline affecting movement, speech, swallow and cognition, and often requiring long-term care. Due to the complex needs that may emerge, those affected are encouraged to consider end-of-life (EOL) planning early on to mitigate future challenges. Initial evidence shows that undertaking planning discussions around this subject encounter various barriers; those with HD are disinclined to address such questions, and healthcare professionals (HCPs) can be reluctant to engage in these distressing conversations. Aims To provide an up-to-date synthesis of evidence regarding EOL planning discussions among people affected by HD and HCPs considering these conversations. Methods We undertook systematic searches of six databases, seeking peer-reviewed articles addressing the research question. After screening, nine articles were identified, and a narrative synthesis undertaken to develop key themes. Results Preliminary synthesis shows polarisation between patients and HCPs. Gene-carrying individuals express a need for control while families feel ‘in the dark’, and HCPs are unwilling to undertake these conversations without initiation from the patient. Discussions that do occur appear more focused on process than broader holistic care. Conclusions EOL planning in HD remains inconsistently implemented, and often process-focused, with a need for more holistic and patient-centred discussions. Further research is necessary to explore opinions and experiences among HD families, and to support HCPs to successfully lead on introducing these broader discussions. Additionally, much of the literature addressed euthanasia rather than natural death, which may have influenced the findings, and highlights a need for ongoing research.
Authors: Catherine Lyon, Chris Williams, Sarah Gunn
Institutions: University of Leicester, Huntington's Disease Association
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: gold
OpenAlex ID: W4402373670