The ALS Patient Care Database: insights into end-of-life care in ALS

Amyotroph Lateral Scler Other Motor Neuron Disord. 2001 Dec;2(4):203-8. doi: 10.1080/14660820152882214.


Objective: To study clinical practices and patient outcomes near the end of life in amyotrophic lateral sclerosis (ALS).

Background: Patients, families, and healthcare providers face several dilemmas in selecting and delivering care near the end of life in ALS. Published data on clinical practices and their benefits during end-of-life care for ALS patients consist of anecdotal reports based on small case series or individual case reports.

Methods: Data were obtained from 1014 American and Canadian patients with ALS who died while participating in a large observational registry (the ALS Patient Care Database) during the past four years. Following death, a caregiver or family member provided data for each patient using a standard questionnaire. Data were principally generated through American and Canadian ALS multidisciplinary centers of excellence.

Results: Most patients died peacefully (90.7%) and 62.4% died in a hospice-supported environment. Advance directives were in place for 88.9% of patients and were followed in 96.8%. Among the 67 patients who exhibited distress in the dying process, symptoms included breathing difficulties (82.1%), fear/anxiety (55.2%), pain (23.9%), insomnia (14.9%), and choking (14.93%). Oxygen was given to 52.6% of patients, and pain medications were given to 74%.

Conclusion: These data suggest that palliative care at the end of life was relatively well managed for most patients with ALS who participated in this study; nevertheless, several opportunities for improvement were identified.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Amyotrophic Lateral Sclerosis / mortality*
  • Amyotrophic Lateral Sclerosis / therapy*
  • Analysis of Variance
  • Chi-Square Distribution
  • Databases as Topic / statistics & numerical data*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Palliative Care / methods
  • Palliative Care / statistics & numerical data*
  • Retrospective Studies
  • Terminal Care / methods
  • Terminal Care / statistics & numerical data*