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

Muscle Nerve. 2019 Aug;60(2):137-140. doi: 10.1002/mus.26607. Epub 2019 Jun 20.


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.

Keywords: advance care planning; ambulatory care; amyotrophic lateral sclerosis; delivery of health care; palliative care.

MeSH terms

  • Advance Care Planning
  • Ambulatory Care
  • Amyotrophic Lateral Sclerosis / therapy*
  • Anxiety
  • Decision Making
  • Delivery of Health Care
  • Depression
  • Enteral Nutrition
  • Humans
  • Palliative Medicine*
  • Patient Care Planning
  • Patient Care Team*
  • Patient Selection*
  • Referral and Consultation*
  • Tracheostomy