End-of-life care of patients with amyotrophic lateral sclerosis and home mechanical ventilation: the national population-based DISCOVERY study

23/10/2026

AI Summary

Noninvasive ventilation linked to higher anxiety (76% vs 48%) and breathlessness (72% vs 31%) during the final week of life.
Ventilation pathway did not affect overall symptom relief; prevalence and relief of other symptoms were similar between NIV and invasive ventilation.
Most deaths were caused by ALS and were anticipated; place of death differed, with NIV patients more often in specialised palliative wards.

TL;DR (AI Generated)

Background: Home mechanical ventilation (HMV), including noninvasive ventilation (NIV) and invasive ventilation (IV), is increasingly used in people with amyotrophic lateral sclerosis (pwALS), but its impact on end-of-life care remains unclear.

Methods: This national, population-based retrospective cohort study included pwALS using HMV in the Swedish National Quality Registry for Respiratory Failure (Swedevox), cross-linked with the Swedish Register of Palliative Care, which contains staff-reported end-of-life data, and other national registries.

End-of-life communications and cause of death were similar; place of death differed by ventilation pathway; however, most deaths were anticipated.

Basic summary

Amyotroph Lateral Scler Frontotemporal Degener. 2026 Oct 21:1-8. doi: 10.1080/21678421.2026.2747563. Online ahead of print.

ABSTRACT

Background: Home mechanical ventilation (HMV), including noninvasive ventilation (NIV) and invasive ventilation (IV), is increasingly used in people with amyotrophic lateral sclerosis (pwALS), but its impact on end-of-life care remains unclear. Objective: To examine whether ventilation pathway (NIV or IV) influences symptom prevalence and relief during the final week of life in pwALS. Secondary objectives were to assess end-of-life discussions, place and cause of death, and anticipated death. Methods: This national, population-based retrospective cohort study included pwALS using HMV in the Swedish National Quality Registry for Respiratory Failure (Swedevox), cross-linked with the Swedish Register of Palliative Care, which contains staff-reported end-of-life data, and other national registries. Results: Among 652 pwALS, 609 received NIV (mean age 66 years, 42% female) and 43 IV (mean age 60 years, 42% female). Anxiety and breathlessness were more common in the NIV group (76% vs 48% and 72% vs 31%, both p < 0.001), while prevalence and relief of other symptoms were similar between groups. Most patients had end-of-life discussions (NIV 87%, IV 92%). NIV patients more often died in specialized palliative wards (22% vs 7%, p = 0.023). Most deaths were due to ALS (96%) and were anticipated (NIV 94%, IV 88%). Conclusions: In pwALS with HVM, NIV was associated with higher rates of anxiety and breathlessness in the final week of life, but the ventilation pathway did not influence overall symptom relief. End-of-life communications and cause of death were similar; place of death differed by ventilation pathway; however, most deaths were anticipated.

PMID:42904407 | DOI:10.1080/21678421.2026.2747563

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