ICD recipients' understanding of ethical issues, ICD function, and practical consequences of withdrawing the ICD in the end-of-life.
BACKGROUND
The current international expert consensus statements recommend that clinicians should discuss elective implantable cardioverter defibrillator (ICD) deactivation before implantation of the device, and then consistently during the illness trajectory. However, no previous studies have investigated predictors of ICD patients' knowledge about end-of-life issues or whether knowledge influences patients' attitudes about deactivation.


METHODS
This nationwide survey study (n = 3,067) had a cross-sectional correlational design of self-reported data. Participants were recruited from the Swedish ICD and Pacemaker Registry and asked to complete a questionnaire about knowledge in relation to the ICD and end-of-life.


RESULTS
Only 79 respondents (3%) scored correctly on all 11 questions. The mean sample score was 6.6 ± 2.7 out of a maximum score of 11. A total of 835 participants (29%) had an insufficient knowledge when using the 25th percentile as a cutoff. Younger ICD recipients, those cohabiting, male participants, and those who had received shocks, had a generator replacement, or who had discussed illness trajectory with their physician were more likely to have sufficient knowledge on the end-of-life issues. Insufficient knowledge was associated with indecisiveness to make decisions about ICD deactivation in the end-of-life situations, and with favorable attitudes about replacing the ICD even if seriously ill or have reached an advanced age, and keeping the shock therapy of the ICD even in a terminal phase of life when dying from cancer or other serious chronic illnesses.


CONCLUSIONS
Insufficient knowledge is common among ICD recipients and is associated with attitudes and decisions that may result in a stressful and potentially painful end-of-life situation.
Division of Nursing Sciences, Department of Medicine and Health Sciences, Faculty of Health Sciences, Linköping University, Department of Cardiology, County Council of Östergötland, Linköping, Sweden.
Anna
A
Strömberg
Christina
C
Fluur
Jennifer
J
Miller
Misook L
ML
Chung
Debra K
DK
Moser
Ingela
I
Thylén
D000368:Aged; D003430:Cross-Sectional Studies; D017147:Defibrillators, Implantable / Q000941:ethics*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D011795:Surveys and Questionnaires; D013727:Terminal Care; D028761:Withholding Treatment / Q000941:ethics*
communication; end-of-life; implantable cardioverter defibrillator; knowledge; quality-of-life