Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center. Issue 2 (20th June 2019)

• Record Type: Journal Article
• Authors: Brizzi, Kate; Paganoni, Sabrina; Zehm, April; De Marchi, Fabiola; Berry, James D.
• Is Part Of: Muscle & nerve. Volume 60:Issue 2(2019)
• Page Start: 137
• Page End: 140
• Publication Date: 2019-06-20
• Subjects: advance care planning -- ambulatory care -- amyotrophic lateral sclerosis -- delivery of health care -- palliative care; Neuromuscular diseases -- Periodicals; Muscles -- Periodicals; Nerves -- Periodicals; 616.74
• DOI: 10.1002/mus.26607
• Languages: English
• ISSNs: 0148-639X

Abstract

ABSTRACT: Palliative care specialists can aid in the care of patients with amyotrophic lateral sclerosis (ALS). In this article, we describe our 1‐year experience incorporating a palliative care specialist into the ALS multidisciplinary team. We describe our integration model, patient selection, and visit content. Of 500 total clinic patients, 74 (14.8%) were seen by the palliative care specialist in 1 year. Referral was most often triggered by advance care planning needs (91%). In the initial visit with the palliative care specialist, topics most frequently covered included goals of care (84%), anxiety/depression (35%), and medical decision‐making about feeding tubes (27%) or tracheostomy (31%). Symptom management comprised a relatively small number of the visits, and duration of visits was limited by patient fatigue. Patients with complex goals of care may benefit from the input of a palliative care specialist, and unique integration models may help to facilitate care delivery. Muscle Nerve 60 : 137–140, 2019