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

Tamara Thurn, Gian Domenico Borasio, Adriano Chiò, Miriam Galvin, Christopher J. McDermott, Gabriele Mora, Walter Sermeus, Andrea S. Winkler, Johanna Anneser

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17 Scopus citations

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.

Original languageEnglish
Pages (from-to)74-81
Number of pages8
JournalAmyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Volume20
Issue number1-2
DOIs
StatePublished - 2 Jan 2019

Keywords

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

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