title: Patients' perspective on deactivation of the implantable cardioverter-defibrillator near the end of life.
abstract: Recent guidelines have emphasized the importance of discussing the issue of deactivation near the end of life with patients with an implantable cardioverter-defibrillator (ICD). Few studies have examined the patient perspective and patients' wishes. We examined patients' knowledge and wishes for information; and the prevalence and correlates of a favorable attitude toward deactivation. Three cohorts of ICD patients (n = 440) extracted from our institutional database were asked to complete a survey that included a vignette about deactivation near the end of life. Of the 440 patients approached, 294 (67%) completed the survey. Most patients (68%) were aware that it is possible to turn the ICD off, and 95% believed it is important to inform patients about the possibility. Of the patients completing the survey, 84% indicated a choice for or against deactivation. Psychological morbidity was not associated with a response in favor or against deactivation (p >0.05 for all). The wish for a worthy death near the end of life was an independent associate of a favorable attitude toward deactivation (odds ratio 2.14, 95% confidence interval 1.49 to 3.06, p <0.0001), adjusting for the importance of avoiding shock-related pain, anxiety, and poor quality of life and other potential confounders. In conclusion, most ICD patients seemed to favor device deactivation at the end of life, primarily owing to the wish for a worthy death. This finding indicates that patients have thought about the issue of deactivation near the end of life and might welcome the chance to discuss it with their physician.
authors.affiliation: CoRPS-Center of Research on Psychology in Somatic diseases, Tilburg University, Tilburg, The Netherlands. s.s.pedersen@tilburguniversity.edu
authors.forename: Susanne S
authors.initials: SS
authors.lastname: Pedersen
authors.forename: Rismy
authors.initials: R
authors.lastname: Chaitsing
authors.forename: Tamas
authors.initials: T
authors.lastname: Szili-Torok
authors.forename: Luc
authors.initials: L
authors.lastname: Jordaens
authors.forename: Dominic A M J
authors.initials: DA
authors.lastname: Theuns
mesh_terms: D001145:Arrhythmias, Cardiac / Q000523:psychology / Q000628:therapy*; D001291:Attitude of Health Personnel; D003657:Decision Making; D017147:Defibrillators, Implantable / Q000523:psychology* / Q000706:statistics & numerical data; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance / Q000523:psychology*; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods* / Q000523:psychology