Advance Care Planning in Amyotrophic Lateral Sclerosis: a retrospective population-based study

Area of Science:

• Neurology
• Palliative Care
• Bioethics

Background:

• Autonomy and self-determination are increasingly recognized in Amyotrophic Lateral Sclerosis (ALS) care.
• Advance Care Planning (ACP) is integrated into ALS guidelines, with Italian Law 219 supporting patient healthcare preferences.
• Limited longitudinal data exist on ACP prevalence and its impact in ALS patients.

Purpose of the Study:

• To determine the prevalence of ACP discussions among ALS patients.
• To evaluate the effectiveness of ACP in end-of-life management.
• To assess the influence of Italian Law 219/2017 on ACP practices.

Main Methods:

• Retrospective analysis of demographic and clinical data from the PARALS Register (2008-2020).
• Focus on ACP discussions, patient preferences for tracheostomy, and end-of-life outcomes.
• Statistical examination of associations between ACP and clinical factors/outcomes.

Main Results:

• Over half of 1219 ALS patients (53.7%) engaged in ACP discussions, with 90.8% concordance between expressed wishes and outcomes.
• ACP prevalence rose from 51.6% to 61.94% (p=0.025) between 2008-2020.
• Cognitive impairment and lack of non-invasive mechanical ventilation (NIMV) use were linked to lower ACP rates; older age correlated with tracheostomy.

Conclusions:

• ACP is vital in ALS care, demonstrating strong alignment between patient preferences and end-of-life outcomes.
• Cognitive decline significantly impacts ACP engagement, underscoring the need for early, individualized support.
• The rise in ACP reflects a growing commitment to patient autonomy in Italy, though further expansion is needed to ensure self-determination throughout disease progression.