RT Journal Article
SR Electronic
T1 Embedded Palliative Care for Amyotrophic Lateral Sclerosis
JF Neurology: Clinical Practice
FD Lippincott Williams & Wilkins
SP 68
OP 75
DO 10.1212/CPJ.0000000000001124
VO 12
IS 1
A1 Kelly Fahrner-Scott
A1 Carly Zapata
A1 David L. O'Riordan
A1 Eve Cohen
A1 Laura Rosow
A1 Steven Z. Pantilat
A1 Catherine Lomen-Hoerth
A1 Kara E. Bischoff
YR 2022
UL http://cp.neurology.org/content/12/1/68.abstract
AB Background and Objectives Palliative care (PC) is recommended for people with amyotrophic lateral sclerosis (ALS), but there is scant literature about how to best provide this care. We describe the structure and impact of a pilot program that integrates longitudinal, interdisciplinary PC into the care of patients with ALS.Methods Observational cohort study of patients with ALS referred to outpatient PC and seen for at least 3 PC visits October 2017–July 2020.Results Fifty-five patients met the inclusion criteria. Three-quarters (74.5%) were Caucasian, and 78.2% spoke English. Patients were referred for advance care planning (58.2%), support for patient/family (52.7%), and symptoms other than pain (50.9%). Patients had a mean of 5 scheduled PC visits, the majority occurred by video. A PC physician, nurse, social worker, and chaplain addressed pain (for 43.6% of patients), nonpain symptoms (94.5%), psychosocial distress (78.2%), spiritual concerns (29.1%), care planning (96.4%), and supported family caregivers (96.4%). With PC, the rate of completion of advance directives increased from 16.4% to 36.4% (p = 0.001) and Physician Orders for Life-Sustaining Treatment forms from 10.9% to 63.6% (p < 0.001). Of the 27 patients who died, 77.8% used hospice, typically for more than 30 days. Eleven patients obtained aid-in-dying prescriptions, and 8 took these medications, accounting for 29.6% of the deaths.Discussion Integrating longitudinal, interdisciplinary PC into the care of patients with ALS is feasible, addresses needs in multiple domains, and is associated with increased rates of advance care planning. Controlled studies are needed to further elucidate the impact of PC on patients with ALS, their families, and clinicians.