Misperceptions of ICD performance at end of life common among recipients with HF

LAS VEGAS — Patients in Sweden with an implantable cardioverter defibrillator often have misperceptions about its function at the end of life that could influence decision-making regarding care, according to results presented at the Heart Failure Society of American Annual Scientific Meeting.

Researchers mailed the End-of-Life ICD Questionnaire, asking questions related to knowledge, experiences and attitudes regarding ICDs and end-of-life care, to 5,535 patients in Sweden with an ICD who were enrolled in the National Swedish ICD and Pacemaker Registry upon implantation. All participants had been implanted with an ICD at least 1 year before receiving the questionnaire. Patients also responded to the EuroQOL questionnaire to assess quality of life, and the Hospital Anxiety and Depression Scale to measure symptoms of anxiety and depression.

Of those who received the survey, 3,067 responded. This group had a mean age of 66 ± 11 years, was 21% female and included 1,606 patients with HF. Those with HF reported significantly poorer QOL and more symptoms of anxiety and depression than those without HF (P<.001 for all), but had similar attitudes and degrees of knowledge about end-of-life care for patients with ICDs.

Patients reported discussing the trajectory of their illness with their doctor in 39% of cases, with only 14% reporting having discussed deactivation of the ICD and 8% having discussed their wishes with family members. Forty percent of participants with HF reported that they did not want to discuss deactivating the device with their doctor. Among the remaining patients, 64% indicated that such a discussion was only warranted if their prognosis worsened, and 70% stated that the discussion was only warranted when they approached end of life.

The researchers also noted that several patients with HF had misconceptions about their ICD: 71% believed that the device always delivered shocks at end of life; and 27% indicated that ICD deactivation was equivalent to euthanasia. Twenty-six percent believed that surgical removal was necessary to deactivate the device, whereas 36% believed the device could be deactivated without their knowledge.

When asked whether they would want their ICD deactivated in the event that they were dying of cancer, 62% said they did not want it deactivated. The vast remainder of responders were unable to make a decision on the matter.

“Many ICD recipients had not discussed end-of-life or ICD deactivation, and really didn’t want to do so [and] ICD recipients with HF had many misperceptions,” presenter Debra Moser, DNSc, RN, FAAN, of the University of Kentucky, said here. “Ultimately, without better knowledge of their ICD and its performance at the end of life, and without more informed discussion, HF patients and their families are ill-prepared to engage in shared decision-making.”

For more information:

Strömberg A. Abstract #028. Rapid-Fire Abstracts II. Presented at: the Heart Failure Society of American Annual Scientific Meeting; Sept. 14-17, 2014; Las Vegas.

Disclosure: Cardiology Today could not confirm any relevant disclosures at the time of publication.