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Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center

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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.

Original languageEnglish
Pages (from-to)137-140
Number of pages4
JournalMuscle and Nerve
Volume60
Issue number2
DOIs
Publication statusPublished - Aug 2019
Externally publishedYes

Keywords

  • advance care planning
  • ambulatory care
  • amyotrophic lateral sclerosis
  • delivery of health care
  • palliative care

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