What we have here, may well be a failure of communication. In the very serious context of end-of-life decisions for patients with implantable cardioverter-defibrillators (ICDs), researchers have found a gap in patients’ understanding of harms and benefits of their devices and perceived outcomes. They published their findings as a research letter online Jan. 28 in the Journal of the American Medical Association: Internal Medicine.
John A. Dodson, MD, of the cardiology and geriatrics sections at the Yale University School of Medicine in New Haven, Conn., and colleagues designed a study to look at patient preferences for ICD deactivation in hypothetical end-of-life scenarios. While the Heart Rhythm Society has encouraged physicians to proactively talk with patients about deactivation of devices to prevent unnecessary and painful end-of-life shocks that do not prolong survival, surveys have found most patients prefer to keep devices activated.
The 95 participants (mean age 71.4 years with a mean duration of ICD implant of four years prior) were first asked to describe the potential benefits and harms of their ICD and then were read a standardized description of the current best evidence. Almost a third reported unknown or no benefits to the ICD and almost two-thirds could provide no potential harm. Only two mentioned inappropriate end-of-life shocks.
Dodson et al found that 71 percent of respondents indicated that they would prefer deactivation in at least one of five scenarios: permanently unable to get out of bed; permanent memory problems: burden to family; mechanical ventilation of more than one month; and an advanced incurable disease. After hearing about the latest evidence, 61 percent chose deactivation in the context of an incurable disease and 24 percent selected deactivation if permanently unable to get out of bed.
“Our qualitative finding that a sizeable number of participants did not have a good understanding of the benefits or potential burdens of their ICD underscores this possibility and highlights the importance of physician communication of information,” Dodson et al wrote. Physicians’ communication should include an effort to help patients set goals based on their “desired health states, since tolerance for shocks and discomfort will be based on the ultimate perceived outcome.”
For more information on ICD-related end-of-life decisions, please read “Seeking Direction: How to Manage Device Patients at the End of Life” in the May 2012 issue of Cardiovascular Business.