The ALS Patient Care Database: insights into end-of-life care in ALS
Authors
Mandler, R. N.Anderson, Frederick A. Jr.
Miller, Robert G.
Clawson, Lora
Cudkowicz, M.
Del Bene, M.
UMass Chan Affiliations
Center for Outcomes ResearchDocument Type
Journal ArticlePublication Date
2001-12-18Keywords
Amyotrophic Lateral SclerosisAnalysis of Variance
Chi-Square Distribution
Databases as Topic
Female
Humans
Male
Middle Aged
Palliative Care
Retrospective Studies
Terminal Care
Health Services Research
Metadata
Show full item recordAbstract
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.Source
Amyotroph Lateral Scler Other Motor Neuron Disord. 2001 Dec;2(4):203-8. Link to article on publisher's siteDOI
10.1080/14660820152882214Permanent Link to this Item
http://hdl.handle.net/20.500.14038/27105PubMed ID
11958732Related Resources
Link to Article in PubMedae974a485f413a2113503eed53cd6c53
10.1080/14660820152882214