The ALS patient care database: Insights into end-of-life care in ALS

R. N. Mandler, F. A. Anderson, R. G. Miller, L. Clawson, M. Cudkowicz, M. Del Bene, Walter G. Bradley, Linda I. Boynton de Sepulveda, Benjamin R. Brooks, Neil R. Cashman, Michael Graves, Yadollah Harati, Terry Heiman-Patterson, Mary Lyon, Hiroshi Mitsumoto, Dan Moore, Steven P. Ringel, Jeffrey Rosenfeld, Mark A. Ross, Michael J. StrongRobert L. Sufit

Research output: Contribution to journalArticlepeer-review

65 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)203-208
Number of pages6
JournalAmyotrophic Lateral Sclerosis and Other Motor Neuron Disorders
Issue number4
StatePublished - 2001


  • Advance directives
  • End-of-life care
  • Motor neuron disease

ASJC Scopus subject areas

  • Clinical Neurology


Dive into the research topics of 'The ALS patient care database: Insights into end-of-life care in ALS'. Together they form a unique fingerprint.

Cite this