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


CONCLUSIONS
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.
Mandler
R N
RN
ALSA-Certified Center of The George Washington University, Washington DC 20037, USA. neurnm@gwumc.edu
Anderson
F A
FA
Miller
R G
RG
Clawson
L
L
Cudkowicz
M
M
Del Bene
M
M
D000690:Amyotrophic Lateral Sclerosis / Q000401:mortality* / Q000628:therapy*; D000704:Analysis of Variance; D016009:Chi-Square Distribution; D019992:Databases as Topic / Q000706:statistics & numerical data*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000379:methods / Q000706:statistics & numerical data*; D012189:Retrospective Studies; D013727:Terminal Care / Q000379:methods / Q000706:statistics & numerical data*