Many patients who have an implantable cardioverter defibrillator (ICD) are unaware that the device can be deactivated to prevent painful shocks in their final days of life, according to two separate studies which will be presented at ACC.16 in Chicago.

In the first study, Silvia del Castillo, MD, and colleagues examined 243 patients with ICDs at three Spanish hospitals. While most patients showed a high understanding of the reason for and function of their ICD, only 64 percent knew that shocks were painful. Further, 68 percent thought that shocks were inevitable in the presence of a ventricular tachycardia, and 21 percent believed that deactivation would lead to immediate cardiac arrest. Only 38 percent knew they could decide to deactivate after consulting with a physician, and 37 percent knew that ICD deactivation is “ethically appropriate and recommended” by cardiovascular societies.

“When doctors don’t provide enough information about deactivation or delay that conversation until the final hours, it undercuts the patient’s right to make their own decisions,” says del Castillo.

Meanwhile, a second study conducted in the Netherlands by Dilek Yilmaz, MD, et al., surveyed 328 patients with ICDs. They found that 73 percent knew their ICD could be deactivated and 64 percent knew they were at risk of shocks. However, only 12 percent had consulted with their physician on these topics.

Neither study found that gender or level of education played a role in a patient’s knowledge of their ICD. However, both study authors attribute their findings to communication gaps and cultural challenges around end-of-life planning.

“As a doctor, if you don’t even discuss [end of life planning] with your patient, you could be denying them the opportunity for a peaceful death,” adds Yilmaz. 

Keywords: Death, Defibrillators, Implantable, Heart Arrest, Netherlands, Patient Rights, Tachycardia, Ventricular, ACC Annual Scientific Session

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