Fresh calls for patients to be counselled more about their internal defibrillators (ICDs) have come from researchers.
In a survey of patients in America with ICDs, a surprising number had a poor grasp of their devicesâ€™ potential benefits and downsides, said lead author Dr John Dodson from the Yale University School of Medicine.
The researchers were asking patients under what circumstances would they consider having their device turned off.
The 95 patients were aged over 50 (a mean of 71) and received an ICD (without biventricular pacing) between 2006 to 2009. They had their device a mean of four years previously, and 29 per cent had received a shock.
The survey asked patients for their views on the devicesâ€™ up and down sides. Almost one in three said there were no benefits or they were unknown, and some cited improvement of heart function or prevention of atrial fibrillation or stroke.
More than six in ten could not name a potential harm although about 15 per cent cited anxiety or other concerns about getting a shock.
Patients were then read a script providing the best current evidence regarding benefits and disadvantages of ICDs. They were asked whether they would want their ICD deactivated in five situations, including being permanently bedridden, permanent memory impairment, being a burden to family members, under prolonged mechanical ventilation, and having an advanced incurable disease.
Seven in ten wanted deactivation under at least one scenario. Having an advanced incurable disease was the most popular (61 per cent), and being permanently bedridden was the least (24 per cent).
Dr Dodson said that previous studies had suggested that most patients did not consider advanced illness as enough cause for ICD deactivation.
The authors thought the contrasting findings may have been influenced by the script.
â€śWe propose our survey created a process that helped patients consider and clarify their preferences. It may have become a successful decision-making intervention," said the researchers.
They added: â€śMany patients with ICDs are unaware that it is possible to deactivate an ICD. By introducing deactivation, exploring patient knowledge of ICDs, clarifying their knowledge about deactivation, and then by reading and asking for a response to a series of five specific clinical scenarios about deactivation, we may have created a situation where post-survey respondents were in a new place philosophically regarding ICD deactivation."
Dr Dodsonâ€™s team said that at least a portion of patient ICD counselling should include preparation for a time when a person might wish to have his or her ICD deactivated.
The survey analysis was published online in Journal of the American Medical Association Internal Medicine.
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