Since the inception of palliative care in the late 60s, amyotrophic lateral sclerosis (ALS) has served as a model for palliative care and advance care planning (ACP) in neurodegenerative disease. Given its combination of relentless progression, leading to death within 3–5 years from symptom onset, its relatively predictable clinical course, and the lack of severe cognitive changes in most affected patients, ALS lends itself particularly well to the implementation of ACP. Indeed, the first paper explicitly addressing the issue of ACP in ALS dates from 1996, and concerned the ACP wishes of ALS patients on long-term mechanical ventilation (LTMV). Its conclusion was that “Most ALS patients receiving LTMV would want to stop it under certain circumstances, and the process of advance care planning enhances communication of patient preferences to family and physicians.”
In recent years, several papers have appeared looking at possible ways to facilitate ACP for ALS patients and their families. Importantly, it has been long known that a significant proportion of ALS patients may change their preferences for life-sustaining measures (e.g., mechanical ventilation) over a six-month period. This underscores the need for repeated discussions during the course of the disease, in order to take the coping process into account.
Given the fact that, still today, many ALS patients are intubated and ventilated in the terminal phase without ever having had the chance to express their will, there clearly is a dire need to improve and disseminate the evidence base for ACP in ALS.
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