Documentation of advance care planning forms in patients with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder characterized by progressive weakness. Survival is typically only a few years from symptom onset. The often-predictable disease course creates opportunities to complete advance care planning (ACP) forms. The Physician Orders for Life-Sustaining Treatment (POLST) is a broadly used ACP paradigm to communicate end-of-life wishes but has not been well-studied in the ALS population.

In this retrospective chart review study, patients diagnosed with ALS seen between 2014 and 2018 at an academic ALS center were identified. Demographic information, clinical characteristics, and ACP data were collected.

Of 513 patients identified, 30% had an ACP document. POLST forms were competed in 16.6% of patients with 73.8% of forms signed by a neurologist. Only 5.1% of patients saw a palliative care physician. Palliative care consultation was associated with having an POLST on file (P < .001). Patients with completed POLST forms were significantly more likely to have been seen in clinic more frequently (P < .001) and have a lower ALS Functional Rating Scale-Revised score on last visit (P = .005).

Less than one third of patients with ALS completed an ACP document, and only a small percentage completed POLST forms. The data suggest a need for greater documentation of goals of care in the ALS population.