Monograph: Priorities for Advancing Palliative Care for Amyotrophic Lateral Sclerosis: A Consensus Report From a Palliative Care for ALS Working Group in the United States-Article

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This consensus report from the International Neuropalliative Care Society’s Palliative Care for ALS Working Group outlines priorities for improving palliative care for people living with amyotrophic lateral sclerosis (ALS) over the next 3–5 years. The authors emphasize that, although ALS has profound physical, emotional, social, spiritual, and financial effects, palliative care remains inconsistently available and is often introduced too late.

The report identifies five priority areas:

1. <strong>Clinician education</strong> – Neurology clinicians need more training in palliative care, while palliative care clinicians need more ALS-specific education. The group recommends shared learning through webinars, online courses, clinical collaboration, and embedded palliative care clinicians in ALS teams.

2. <strong>Clinical service expansion</strong> – ALS teams should systematically screen for palliative care needs, strengthen psychosocial staffing, support care partners as well as patients, and expand access to palliative care through telemedicine, billing support, and referral directories.

3. <strong>Research</strong> – More rigorous studies, especially randomized trials, are needed to clarify the benefits of palliative care in ALS, identify who needs specialty support, improve quality-of-life measurement, and develop better symptom treatments.

4. <strong>Public awareness</strong> – The report calls for coordinated messaging to correct common misconceptions that palliative care is the same as hospice or end-of-life care. It recommends using accessible language and partnering with ALS advocacy organizations.

5. <strong>Policy change</strong> – Suggested reforms include making palliative care collaboration part of ALS Treatment Center of Excellence criteria, passing workforce-support legislation, and revising hospice policies so people with ALS can keep needed equipment and services.

Overall, the report provides a roadmap to make palliative care more available, better integrated, and more effective for people with ALS and their families.

Keywords

amyotrophic lateral sclerosis

ALS

ALS palliative care

neuropalliative care

clinician education

clinical service expansion

palliative care research

public awareness

policy change

care partners

hospice policy reform