Embedded Palliative Care for Amyotrophic Lateral Sclerosis

Abstract

Background:Palliative care (PC) is recommended for people with amytrophic 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 three PC visits October 2017-July 2020.Results:Fifty-five patients met 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 five scheduled PC visits, the majority occurred by video. A PC physician, nurse, social worker, and chaplain addressed pain (for 43.6% of patients), non-pain 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 eight took these medications, accounting for 29.6% of the deaths.Conclusions: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 ALS patients, families, and clinicians.

Longitudinal specialty palliative care for people with amyotrophic lateral sclerosis using a universal referral method

“…[1][2][3] The development of associated focal mononeuropathies postprocedurally is rare. 4,5 We present a case of focal radial neuropathy, confirmed through neurophysiological testing and imaging, following cryolipolysis.…”

“…1 The benefits of specialty palliative care (PC) for people with ALS (pALS) have been previously described, leading to increasing PC integration in the outpatient setting. [2][3][4][5] In our prior study, we investigated the feasibility and utility of referral of all pALS to a PC specialist in a multidisciplinary clinic, which we called a "universal referral model." 2 Within the first visit, patients were willing and able to engage in advance care planning (ACP).…”

“…This aligns with the findings of prior studies of embedded PC specialists using a trigger model for referral. [4][5][6] In the study by Fahrner-Scott and colleagues, pALS are referred to a PC team at the discretion of the ALS physicians. 5 Using this referral method, they had a similar number of follow-up visits per year (approximately two per patient per year) compared to our study using the universal referral method.…”

“…[4][5][6] In the study by Fahrner-Scott and colleagues, pALS are referred to a PC team at the discretion of the ALS physicians. 5 Using this referral method, they had a similar number of follow-up visits per year (approximately two per patient per year) compared to our study using the universal referral method. The most common reasons for referral were GOC/ACP (58.2%), and these conversations continued over the course of the study period, indicating that there was a high need for GOC/ACP discussions that extended over the entire study period.…”

The Role of Specialty Palliative Care for Amyotrophic Lateral Sclerosis

“…This paper, alongside prior literature, has shown the potential benefits of including specialty palliative care in the care plan for ALS patients. 59 However, studies looking at specific SPC interventions in ALS are lacking. Therefore, much of this perspective paper extrapolates from what is known about ALS and what is known about SPC for other serious illnesses, such as cancer.…”