We surveyed interdisciplinary ALS and Palliative Care (PC) clinicians about current practice regarding PC for ALS, to inform educational, program development, and quality improvement efforts.

Palliative care can improve symptoms and well-being for people with ALS and their care partners, but only a minority receive it.

A multisite panel developed surveys for ALS and PC clinicians. Surveys were distributed through national organizations.

118 ALS clinicians (24.8% physicians, 31% rehabilitation therapists, 12.4% nurses from 28 states) and 145 PC clinicians (51% physicians, 15.1% advanced practice providers, 13.1% social workers from 26 states) responded to the survey.  

Only about half of ALS clinicians reported managing pain (56.6%) and mood symptoms (53.1%) “very well” and even fewer reported effectively addressing spiritual/existential distress (31.0%) and family/care partner needs (43.4%).

When patients were seen by PC, ALS clinicians generally felt satisfied with the PC team’s care (77.0%-97.6% satisfied with each aspect of care queried), while PC clinicians felt less confident in their ability to help with certain aspects of care including managing motor symptoms (47.4% felt unconfident), managing equipment (78.3%), and helping family/care partners understand how to provide care (53.8%), and counseling patients about whether to stop ALS medications (56.6%).

Most ALS clinicians reported the quality of outpatient PC for ALS was excellent (53.7%) or good (38.8%). More than three-quarters of clinicians (76.1% ALS, 79.2% PC) felt PC should be offered to “all people with ALS as part of comprehensive ALS care.”

A national sample of interdisciplinary ALS and PC clinicians reported unmet PC needs in people with ALS. ALS clinicians were generally satisfied with the quality of PC, though PC clinicians identified areas where practice could improve. These findings can guide multisite educational, program development, quality improvement, and advocacy efforts to improve PC services for people facing ALS.