Are ICD recipients able to foresee if they want to withdraw therapy or deactivate defibrillator shocks?

Ingela Thylén, Debra K. Moser, Misook L. Chung, Jennifer Miller, Christina Fluur, Anna Strömberg

Research output: Contribution to journalArticlepeer-review

22 Scopus citations


Background: Expert consensus statements on management of implantable cardioverter defibrillators (ICDs) emphasize the importance of having discussions about deactivation before and after implantation. These statements were developed with limited patient input. The purpose of this study was to identify the factors associated with patients' experiences of end-of-life discussions, attitudes towards such discussions, and attitudes towards withdrawal of therapy (i.e., generator replacement and deactivation) at end-of-life, in a large national cohort of ICD-recipients. Methods: We enrolled 3067 ICD-patients, administrating the End-of-Life-ICD-Questionnaire. Results: Most (86%) had not discussed ICD-deactivation with their physician. Most (69%) thought discussions were best at end-of-life, but 40% stated that they never wanted the physician to initiate a discussion. Those unwilling to discuss deactivation were younger, had experienced battery replacement, had a longer time since implantation, and had better quality-of-life. Those with psychological morbidity were more likely to desire a discussion about deactivation. Many patients (39%) were unable to foresee what to decide about deactivation in an anticipated terminal condition. Women, those without depression, and those with worse ICD-related experiences were more indecisive about withdrawal of therapy. Irrespective of shock experiences, those who could take a stand regarding deactivation chose to keep shock therapies active in many cases (39%). Conclusions: Despite consensus statements recommending discussions about ICD-deactivation at the end-of-life, such discussion usually do not occur. There is substantial ambivalence and indecisiveness on the part of most ICD-patients in this nationwide survey about having these discussions and about expressing desires about deactivation in an anticipated end-of-life situation.

Original languageEnglish
Pages (from-to)22-31
Number of pages10
JournalIJC Heart and Vessels
StatePublished - Dec 2013

Bibliographical note

Funding Information:
Funding sources: This study was funded with grants from the Medical Research Council of Southeast Sweden (FORSS) , Swedish Heart- and Lung Association , Magnus Bergvalls' Foundation , The Swedish Society of Cardiology (ViC) , The Swedish Society of Nursing (Ulrica Crones foundation) , and Linköping University Hospital Research Fund .


  • Arrhythmias
  • Attitudes
  • End-of-life
  • Experiences
  • Implantable cardioverter defibrillator
  • Patient preferences

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine


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