ArticleJournal of neurology2014
Live and let die: existential decision processes in a fatal disease.
Article in Journal of neurology, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
35 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Advance directives in amyotrophic lateral sclerosis - a systematic review and meta-analysis.BMC palliative care · 2024Pooled it
- The association between social connectedness and euthanasia and assisted suicide and related constructs: systematic review.BMC public health · 2024Pooled it
- Canadian best practice recommendations for the management of amyotrophic lateral sclerosis.CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2020Guideline
- Beyond the surface: Exploring differing aspects of wishes to hasten death in patients with amyotrophic lateral sclerosis.Palliative & supportive care · 2026Article
- "Your Thoughts are (were) Free!": Brain-Computer-Interfaces, Neurofeedback, Detection of Deception, and the Future of Mind-Reading.Applied psychophysiology and biofeedback · 2025Review
- [End of life perspectives: a systematic survey of patients with amyotrophic lateral sclerosis].Der Nervenarzt · 2024Article
- Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review.Brain sciences · 2024Article
- Update on recent advances in amyotrophic lateral sclerosis.Journal of neurology · 2024Review
- One third of physicians discuss exit strategies with patients with amyotrophic lateral sclerosis: Results from nationwide surveys among German and Polish neurologists.Brain and behavior · 2024Article
- Article
- Older adults' attitudes toward using Euthanasia at the end-of life: cancer vs. Parkinson's disease.Frontiers in public health · 2024Article
- Quality of life and depression in patients with amyotrophic lateral sclerosis - does the country of origin matter?BMC palliative care · 2023Article
- Quality of life and mental health in the locked-in-state-differences between patients with amyotrophic lateral sclerosis and their next of kin.Journal of neurology · 2022Article
- Caregivers' View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis-How Can We Improve Holistic Care in ALS?Journal of clinical medicine · 2022Article
- Talking about the end of life: communication patterns in amyotrophic lateral sclerosis - a scoping review.Palliative care and social practice · 2022Article
- The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review.BMJ supportive & palliative care · 2021Article
- Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence.Frontiers in neurology · 2021Article
- Disease progression but not physical state per se determines mental wellbeing in ALS.Journal of neurology · 2020Article
- Article
- An observational study on quality of life and preferences to sustain life in locked-in state.Neurology · 2019Observational
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Decisions and determinants of decisions to prolong or shorten life in the course of fatal diseases like ALS are poorly understood. Decisions and desire for hastened death of N = 93 ALS patients were investigated in a prospective longitudinal approach three times in the course of 1 year. Determinants of decisions were evaluated: quality of life (QoL), depression, feeling of being a burden, physical function, social support and cognitive status. More than half of patients had a positive attitude towards life-sustaining treatments and they had a low desire for hastened death. Of those with undecided or negative attitude, 10 % changed attitudes towards life-sustaining treatments in the course of 1 year. Patients' desire to hasten death was low and decreased significantly within 1 year despite physical function decline. Those with a high desire for hastened death decided against invasive therapeutic treatments. QoL, depression and social support were not predictors for vital decisions and remained stable. Feeling of being a burden was a predictor for decisions against life-supporting treatments. Throughout physical function loss, decisions to prolong life are flexibly adapted while desire to shorten life declines. QoL was stable and not a predictor for vital decisions, even though anticipated low QoL has been reported to be the reason to request euthanasia. In contrast, feeling of being a burden in decision making needs more attention in clinical counselling. Considering a patient's possible adaptation processes in the course of a fatal disease is necessary.
Indexed as
Identifiers
24413639What OpenQuestion holds
Registered trials
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.