The ALS Patient Care Database: Insights into End-of-Life Care in ALS

• Published in: Amyotrophic lateral sclerosis and other motor neuron disorders 2001-12, Vol.2 (4), p.203-208
• Main Authors: Mandler, RN, Jr, FA Anderson, Miller, RG, Clawson, L, Cudkowicz, M, Bene, M Del
• Format: Article
• Language: English
• Subjects: Advance Directives; Amyotrophic Lateral Sclerosis - mortality; Amyotrophic Lateral Sclerosis - therapy; Analysis of Variance; Chi-Square Distribution; Databases as Topic - statistics & numerical data; End-OF-LIFE Care; Female; Humans; Male; Middle Aged; Motor Neuron Disease; Palliative Care - methods; Palliative Care - statistics & numerical data; Retrospective Studies; Terminal Care - methods; Terminal Care - statistics & numerical data
• ISSN: 1466-0822
• 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.