Whether to deactivate an implantable cardioverter defibrillator (ICD) at end-of-life is an important question for patients with an ICD. Expert consensus statements recommend physicians discuss end-of-life issues with ICD patients before and after implantation and promote shared decision-making. The degree to which these recommendations are followed in patients with HF is unknown. The purpose of this study was to compare attitudes and knowledge about the ICD at end-of-life between ICD recipients with and without HF to determine how well HF patients could participate in end-of-life decisions.
Every ICD patient in Sweden is enrolled in a national registry. We mailed a survey about attitudes, knowledge and experiences (the End-of-Life-ICD Questionnaire) related to the ICD and end-of-life issues to all registry patients. Data on quality of life (Euro-QOL), anxiety and depression (Hospital Anxiety and Depression Scale) were collected to determine if these affected attitudes or knowledge.
Of the 5,535 patients in the registry, 3,067 (1606 with HF; age 66±11 years; 21% women) participated. Despite patients with HF reporting worse quality of life (p<0.001), and greater depression (p<0.001) and anxiety (p<0.001) than their counterparts without HF, their attitudes and knowledge about the ICD at end-of-life were very similar. Only 39% of HF patients discussed illness trajectory with their doctor, fewer (14%)discussed deactivation with their doctor, and only 8% discussed their wishes with their family. A total of 40% of HF patients did not want to discuss deactivation with their doctor, and 64% felt that such discussions were warranted only as their prognosis worsened or they neared end-of-life (70%). Patients with HF had misconceptions about the ICD: 71% incorrectly believed the ICD always delivered shocks at the end-of-life; 27% believed ICD deactivation was the same as active euthanasia; 26% believed the ICD could only be deactivated by surgical removal; and 36% thought the ICD could be deactivated without their knowledge. With regard to deactivation of the ICD, 62% did not want it deactivated or could not make a choice even if they were dying of cancer. With regard to ICD generator replacement if needed, 54% of HF patients wanted it changed or were undecided (34%) in the context of being seriously ill with another condition; 65% wanted it changed or could not make a choice (26%) even if they were of advanced age. None of these attitudes or knowledge items differed from those of patients without HF.
ICD recipients with HF hold many perceptions about the ICD at end-of-life that could interfere with effective decision-making. Without better knowledge about their ICD and its performance at the end-of-life, or without discussions with doctors and family members about these issues, HF patients with an ICD are ill-prepared to engage in shared decision-making about their ICD and its use at the end-of-life.
Elsevier, 2014. S11- p.
18th Annual Scientific meeting of the Heart Failure Society of America, Las Vegas, NV, USA