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Trends and determinants of end-of-life practices in ALS in the Netherlands

From the Department of Neurology (M.M., J.H.V., J.M.d.V., J.H.J.W., L.H.v.d.B.), Rudolf Magnus Institute of Neuroscience, University Medical Center Utrecht; and Department of Public and Occupational Health (B.D.O.-P., G.v.d.W.), EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, the Netherlands.

Address correspondence and reprint requests to Dr. Jan H. Veldink, Department of Neurology, University Medical Center Utrecht, P.O. Box 85500, 3508 GA Utrecht, the Netherlands j.h.veldink{at}umcutrecht.nl

Background: In the Netherlands, the proportion of patients with amyotrophic lateral sclerosis (ALS) who choose the option of euthanasia or physician-assisted suicide (PAS) is relatively high (20%). The objective of this study was to determine which factors influence end-of-life practices in ALS and whether rates are changing over time.

Methods: In a cohort survey, 204 physicians and 198 informal caregivers (response rates 75% and 80%) of patients with ALS who died between 2000 and 2005 filled out questionnaires of the end-of-life circumstances of the patient. Results were compared with those of a similar study performed during the period 1994–1998.

Results: In 2000–2005, 16.8% of the patients decided on euthanasia or PAS compared to 20.2% in 1994–1998. Thirty-one (14.8%) patients died during continuous deep sedation (CDS) in 2000–2005. Euthanasia or PAS, but not CDS, were significantly associated with religion not being important to the patient, being more educated, and dying at home. Euthanasia or PAS were not associated with quality of care items or symptoms of depression. Loss of function was similar in both groups. Informal caregivers of patients who died after euthanasia or PAS more frequently reported fear of choking (p = 0.003), no chance of improvement (p = 0.001), loss of dignity (p = 0.02), being dependent on others (p = 0.002), and fatigue (p = 0.018) as reasons for shortening life. Hopelessness was associated with euthanasia or PAS, as with CDS.

Conclusion: The frequency of euthanasia or physician-assisted suicide (PAS) in amyotrophic lateral sclerosis (ALS) appeared stable over time and 1 in 7 patients died during CDS. CDS is relatively common in ALS, but appears to have other determinants than euthanasia or PAS. Subjective factors may be important in explaining euthanasia or PAS in ALS.

Abbreviations: ALS = amyotrophic lateral sclerosis; CDS = continuous deep sedation; CI = confidence interval; DSM-IV = Diagnostic and Statistical Manual of Mental Disorders, 4th edition; PAS = physician-assisted suicide.

Supplemental data at www.neurology.org

*These authors contributed equally.

Supported by Prinses Beatrix Fonds (researchers were independent from funders).

Disclosure: Author disclosures are provided at the end of the article.

Received February 25, 2009. Accepted in final form June 24, 2009.