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Heart failure and cardiomyopathies
Original research
Implantable cardioverter defibrillator deactivation and advance care planning: a focus group study
  1. Rik Stoevelaar1,
  2. Arianne Brinkman-Stoppelenburg1,
  3. Anne Geert van Driel2,3,
  4. Rozemarijn L van Bruchem-Visser4,
  5. Dominic AMJ Theuns5,
  6. Rohit E Bhagwandien5,
  7. Agnes Van der Heide1,
  8. Judith AC Rietjens1
  1. 1 Public Health, Erasmus Medical Center, Rotterdam, The Netherlands
  2. 2 Cardiology, Albert Schweitzer Ziekenhuis, Dordrecht, The Netherlands
  3. 3 Rotterdam University of Applied Sciences, Rotterdam, The Netherlands
  4. 4 Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands
  5. 5 Cardiology, Erasmus Medical Center, Rotterdam, The Netherlands
  1. Correspondence to Rik Stoevelaar, Public Health, Erasmus Medical Center, Rotterdam 3015 GD, The Netherlands; r.stoevelaar{at}erasmusmc.nl

Abstract

Objective Implantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation.

Methods In this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes.

Results Most patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences.

Conclusions Although patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.

  • defibrillators, implantable
  • decision making
  • withholding treatment
  • terminal care
  • advance care planning
  • focus groups
  • qualitative research
https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

https://doi.org/10.1136/heartjnl-2019-315721

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    Footnotes

    • Contributors AGvD, RLB, DT, REB, AVdH and JR designed the study. RS, AB-S and JR recruited participants for the focus group. RS, AB-S, AVdH and JR collected the data by conducting the focus groups. RS and JR analysed and interpreted the data. RS wrote the first draft of the manuscript. All authors made a substantial contribution to the concept or design of the work, revised it critically for important intellectual content and take public responsibility for appropriate portions of the content. All authors approved the final version of the manuscript to be published.

    • Funding This work was funded by The Netherlands Organization for Health Research and Development (grant number 80-84400-98-076).

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Ethics approval This study was approved by the Local Ethics Committee of the Erasmus MC, Erasmus University Medical Center Rotterdam (METC-2017-357).

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement No data are available.

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