title: Euthanasia and physician-assisted suicide in amyotrophic lateral sclerosis: a prospective study.
abstract: The objective of this study is to determine if quality of care, symptoms of depression, disease characteristics and quality of life of patients with amyotrophic lateral sclerosis (ALS) are related to requesting euthanasia or physician-assisted suicide (EAS) and dying due to EAS. Therefore, 102 ALS patients filled out structured questionnaires every 3 months until death and the results were correlated with EAS. Thirty-one percent of the patients requested EAS, 69% of whom eventually died as a result of EAS (22% of all patients). Ten percent died during continuous deep sedation; only one of them had explicitly requested death to be hastened. Of the patients who requested EAS, 86% considered the health care to be good or excellent, 16% felt depressed, 45% experienced loss of dignity and 42% feared choking. These percentages do not differ from the number of patients who did not explicitly request EAS. The frequency of consultations of professional caregivers and availability of appliances was similar in both groups. Our findings do not support continuous deep sedation being used as a substitute for EAS. In this prospective study, no evidence was found for a relation between EAS and the quality and quantity of care received, quality of life and symptoms of depression in patients with ALS. Our study does not support the notion that unmet palliative care needs are related to EAS.
authors.affiliation: Department of Neurology, Rudolf Magnus Institute of Neuroscience, University Medical Center Utrecht, 3584 CX, Utrecht, The Netherlands, mmaessen@ispm.unibe.ch.
authors.forename: Maud
authors.initials: M
authors.lastname: Maessen
authors.forename: Jan H
authors.initials: JH
authors.lastname: Veldink
authors.forename: Bregje D
authors.initials: BD
authors.lastname: Onwuteaka-Philipsen
authors.forename: Henk T
authors.initials: HT
authors.lastname: Hendricks
authors.forename: Helenius J
authors.initials: HJ
authors.lastname: Schelhaas
authors.forename: Hepke F
authors.initials: HF
authors.lastname: Grupstra
authors.forename: Gerrit
authors.initials: G
authors.lastname: van der Wal
authors.forename: Leonard H
authors.initials: LH
authors.lastname: van den Berg
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications / Q000523:psychology*; D003657:Decision Making; D003863:Depression / Q000209:etiology; D005065:Euthanasia / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology; D017236:Suicide, Assisted / Q000523:psychology*; D011795:Surveys and Questionnaires