title: Trends and determinants of end-of-life practices in ALS in the Netherlands.
abstract: 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Neurology, Rudolf Magnus Institute of Neuroscience, University Medical Center Utrecht, 3508 GA Utrecht, the Netherlands.
authors.forename: M
authors.initials: M
authors.lastname: Maessen
authors.forename: Jan H
authors.initials: JH
authors.lastname: Veldink
authors.forename: B D
authors.initials: BD
authors.lastname: Onwuteaka-Philipsen
authors.forename: J M
authors.initials: JM
authors.lastname: de Vries
authors.forename: J H J
authors.initials: JH
authors.lastname: Wokke
authors.forename: G
authors.initials: G
authors.lastname: van der Wal
authors.forename: L H
authors.initials: LH
authors.lastname: van den Berg
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000401:mortality* / Q000451:nursing*; D001291:Attitude of Health Personnel; D001293:Attitude to Death; D017028:Caregivers / Q000706:statistics & numerical data / Q000639:trends; D015331:Cohort Studies; D003657:Decision Making; D003863:Depression / Q000453:epidemiology; D033101:Euthanasia, Active, Voluntary / Q000706:statistics & numerical data* / Q000639:trends; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007258:Informed Consent / Q000523:psychology / Q000706:statistics & numerical data; D008297:Male; D008875:Middle Aged; D009426:Netherlands / Q000453:epidemiology; D010166:Palliative Care; D010818:Practice Patterns, Physicians' / Q000706:statistics & numerical data / Q000639:trends; D011788:Quality of Life / Q000523:psychology; D012067:Religion; D012297:Right to Die; D012720:Severity of Illness Index; D013315:Stress, Psychological; D017236:Suicide, Assisted / Q000706:statistics & numerical data* / Q000639:trends; D011795:Surveys and Questionnaires; D013727:Terminal Care; D055815:Young Adult