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Patients with ICDs reveal deactivation preferences
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Past research has indicated that despite being informed of end-of-life painful shocks, patients with implantable cardioverter defibrillators prefer to keep the device activated, even if the device does not produce shocks that prolong life.
Now, a research letter published in JAMA Internal Medicine reveals that specific scenarios determine patients’ desire to deactivate their ICD.
Researchers surveyed 95 patients (mean age, 71 years; 28% women) who received a new ICD implant between 2006 and 2009. Each patient completed a 20-minute telephone survey. Patients were asked what they consider the benefits and harms of their ICD, and then were presented with five different scenarios to gauge when they would want their ICD deactivated. The scenarios included: permanently unable to get out of bed; permanent memory problems; burden to family; prolonged mechanical ventilation (longer than 1 month); and advanced incurable disease.
In one or more scenarios, 71% of patients surveyed wanted the ICD deactivated.
“Responses to individual scenarios ranged from 61% of patients wanting deactivation in the setting of advanced incurable disease to 24% wanting deactivation if permanently unable to get out of bed,” John A. Dodson, MD, from the department of internal medicine, Yale University School of Medicine, and colleagues wrote.
In addition, 31 patients were unaware of the benefits of their ICD and 60 could not describe a potential harm of the ICD.
Race and disability were identified as characteristics linked with wanting deactivation, but the same was not observed for age.
According to the researchers, the patients’ lack of understanding of the benefits or potential burdens of their ICD “highlights the importance of physician communication of information.”
For more information:
Dodson JA. Arch Intern Med. 2013;doi:10.1001/jamainternmed.2013.1883.
Disclosure: The study was supported by the National Institute of Aging. Rachel Lampert, MD, reports receiving research grants from Boston Scientific, Medtronic and St. Jude and modest honoraria from Medtronic. Dodson reports no relevant financial disclosures.
Perspective
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Anne M. Gillis, MD, FHRS
The study results were not surprising. A recent paper published in Pacing and Clinical Electrophysiology showed similar trends in terms of patient attitude when asked the specific question about deactivation of an ICD if they were unwell. Results from Raphael and colleagues seem to be consistent with the results from Dodson and colleagues’ current paper.
I noticed this particular group has an interest in patient care as patients approach end of life, due to either the progression of cardiac disease or other forms of disease. I suspect this group focuses on patient education; hence, they may be dealing with a more informed group to begin with. When I looked at the specific survey tool the researchers used — education materials that reinforced the thinking about the whole topic and then the order in which they presented the specific questions about deactivation — I noticed a progressive increase in the number of patients who would respond ‘yes’ or ‘probably’ as they went through the scenarios.
Overall, the survey raises important points about patient education and preparing individuals and families for recognition that that deactivation of an ICD may be considered in certain clinical scenarios. At present, we do a very poor job of discussing this issue with patients and caregivers. We should do a better job of discussing the implications of ICD therapy even before we implant the ICD. We should always review the benefit of a therapy over time and have discussion with the patient about whether the therapy is likely to continue to be beneficial or not.
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