ArticleBMJ supportive & palliative care2021
The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review.
Article in BMJ supportive & palliative care, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed, 21 citations in OpenAlex.
- Factors associated with requests for Medical Assistance in Dying (MAiD) referral among patients with amyotrophic lateral sclerosis receiving specialist palliative care.Journal of neurology · 2026Article
- Beyond the surface: Exploring differing aspects of wishes to hasten death in patients with amyotrophic lateral sclerosis.Palliative & supportive care · 2026Article
- Between guidelines and reality: expert neurologists' perspectives on structural resources for ALS care in Germany.Neurological research and practice · 2026Article
- "Quality of life matters to me more than life, itself": A qualitative exploration of older adults' values and preferences on controlling the time of death.Death studies · 2026Article
- Characteristics and influencing factors of pain in amyotrophic lateral sclerosis: a focus on symptom management.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2025Article
- Article
- [End of life perspectives: a systematic survey of patients with amyotrophic lateral sclerosis].Der Nervenarzt · 2024Article
- "So at least now I know how to deal with things myself, what I can do if it gets really bad again"-experiences with a long-term cross-sectoral advocacy care and case management for severe multiple sclerosis: a qualitative study.BMC health services research · 2024Article
- What medical conditions lead to a request for euthanasia? A rapid scoping review.Health science reports · 2024Article
- Article
- Practical Guide to Management of Long-Term Noninvasive Ventilation for Adults With Chronic Neuromuscular Disease.Respiratory care · 2023Review
- Causes of death among United States decedents with ALS: An eye toward delaying mortality.Annals of clinical and translational neurology · 2023Article
- Family caregivers bereaved by voluntary-assisted dying with a focus on motor neurone disease: the hidden patients.Palliative care and social practice · 2023Article
- Talking about the end of life: communication patterns in amyotrophic lateral sclerosis - a scoping review.Palliative care and social practice · 2022Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAmyotrophic lateral sclerosis (ALS) develops into a life-threatening condition 2 to 4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, thoughts about hastening death are not uncommon.
objectivesOur aim was to examine the scope of literature on the wish to die in ALS and provide an insight into determinants and motives for different end-of-life options.
methodsWe searched eight databases for English and German publications on death wishes in ALS for the period from 2008 to 2018 and updated the search up to May 2020. After the screening process, 213 full texts were included for the final analysis. We analysed the texts in MAXQDA, using deductively and inductively generated codes.
resultsWe identified end-of-life considerations, ranging from wishes to die without hastening death, to options with the possibility or intention of hastening death. Besides physical impairment, especially psychosocial factors, socio-demographic status and socio-cultural context have a great impact on decisions for life-shortening options. There is huge variation in the motives and determinants for end-of-life considerations between individuals, different societies, healthcare and legal systems.
conclusionsFor a variety of reasons, the information and counselling provided on different options for sustaining life or hastening death is often incomplete and insufficient. Since the motives and determinants for the wish to hasten death are extremely diverse, healthcare professionals should investigate the reasons, meaning and strength of the desire to die to detect unmet needs and examine which interventions are appropriate in each individual case.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.