The Role of Specialty Palliative Care for Amyotrophic Lateral Sclerosis

Anish Sethi, Elyse Everett, Ambereen Mehta, Jessica Besbris, Christa Burke, Elizabeth Pedowitz, Molly Kilpatrick, Laura Foster, Sam Maiser

Research output: Contribution to journalReview articlepeer-review

6 Scopus citations


Amyotrophic Lateral Sclerosis (ALS) is a progressive and incurable neurodegenerative disease resulting in the loss of motor neurons, eventually leading to death. ALS results in complex physical, emotional, and spiritual care needs. Specialty Palliative Care (SPC) is a medical specialty for patients with serious illness that provides an extra layer of support through complicated symptom management, goals of care conversations, and support to patients and families during hard times. Using MEDLINE, APA Psychinfo, and Dynamed databases, we reviewed the literature of SPC in ALS to inform and support an expert opinion perspective on this topic. This manuscript focuses on several key areas of SPC for ALS including insurance and care models, advance care planning, symptom management, quality of life, caregiver support, and end-of-life care. Recommendations to improve specialty palliative care for patients with ALS are reviewed in the discussion section.

Original languageEnglish
Pages (from-to)865-873
Number of pages9
JournalAmerican Journal of Hospice and Palliative Medicine
Issue number7
StatePublished - Jul 2022


  • amyotrophic lateral sclerosis
  • goals of care
  • hospice
  • palliative care
  • symptom management


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