Physicians’ attitudes toward end-of-life decisions in amyotrophic lateral sclerosis

Abstract

Objective: This study aims (1) to assess physicians’ attitudes toward different palliative end-of-life (EOL) practices in amyotrophic lateral sclerosis (ALS) care, including forgoing artificial nutrition and hydration (FANH), continuous sedation until death (CSD), and withdrawing invasive ventilation (WIV), and toward physician-assisted dying (PAD) including physician-assisted suicide and euthanasia and (2) to explore variables influencing these attitudes. Methods: We used two clinical vignettes depicting ALS patients in different stages of their disease progression to assess the influence of suffering (physical/psycho-existential) on attitudes toward WIV and the influence of suffering and prognosis (short-term/long-term) on attitudes toward FANH, CSD, and PAD. Results: 50 physicians from European ALS centers and neurological departments completed our survey. Short-term prognosis had a positive impact on attitudes toward offering FANH (p = 0.014) and CSD (p = 0.048) as well as on attitudes toward performing CSD (p = 0.036) and euthanasia (p = 0.023). Predominantly psycho-existential suffering was associated with a more favorable attitude toward WIV but influenced attitudes toward performing CSD negatively. Regression analysis showed that religiosity was associated with more reluctant attitudes toward palliative EOL practices and PAD, whereas training in palliative care was associated with more favorable attitudes toward palliative EOL practices only. Conclusion: ALS physicians seem to acknowledge psycho-existential suffering as a highly acceptable motive for WIV but not CSD. Physicians appear to be comfortable with responding to the patient’s requests, but more reluctant to assume a proactive role in the decision-making process. Palliative care training may support ALS physicians in these challenging situations.

Keywords:

• ALS/amyotrophic lateral sclerosis
• MND/motor neuron disease
• end-of-life decisions
• palliative care
• assisted suicide
• palliative sedation

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Additional information

Funding

The work of TT, ASW, and JA for this article was supported by the German Ministry for Education and Research within the Joint Programme for Neurodegenerative Disease Research (www.jpnd.eu; project no. 01ED1402B). ALS-CarE is an EU Joint Pogramme – Neurodegenerative Disease (JPND) research project. The project is supported through the following funding organizations (under the aegis of JPND – www.jpnd.eu): Belgium, Research Foundation Flanders (FWO); Germany, Bundesministerium für Bildung und Forschung (BMBF); Ireland, Health Research Board; Italy, the Ministry of Health and the Ministry of Education, University and Research (MIUR); UK, Economic and Social Research Council (ESCR).