AJN: What is appropriate end-of-life care for ICD patients?

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Implantable cardioverter-defibrillators (ICDs) are standard treatment for patients at risk for life-threatening cardiac arrhythmias, but what happens when these patients are delivered high-energy, painful electric shocks, particularly during end of life? While device deactivation is an option, no standard protocols are in place to address this issue. Policies must be developed to help guide providers on best practices during end-of-life care, according to a research published in this month's American Journal of Nursing.

“A few years ago, in a letter to the editor of another journal, a nurse practitioner [NP] described how one of her patients, a man on home hospice care, had suffered 33 shocks as he lay dying in his wife’s arms,” wrote study author James E. Russo, MSN, RN, certified cardiac device specialist and coordinator of the Pacemaker Clinic at the Department of Veterans Affairs Medical Center in New York City. “The source of those shocks, his ICD, reportedly got so hot that it burned through his skin. The device that had been implanted to save his life caused this man and his wife great distress in his final hours.”

Currently, it is unclear as to what steps providers should take in terms of ICD function at a patient’s end of life. While Russo offered that device deactivation is an option, providers and patients lack knowledge of ICD functions and options at a patient's end of life. He said that more research is needed and policies regarding these issues must be developed.

Russo conducted a systematic review to both identity factors that delay ICD deactivation discussions and to identify ways to promote timely deactivation discussions to foster better patient-centered, end-of-life care for patients with ICDs. To do so, Russo explored multiple databases and chose 14 studies.

“Several case reports have described terminally ill patients receiving multiple shocks during their final minutes or hours,” Russo wrote. Currently, it remains unknown as to whether a device should be deactivated, and when. “Could it be considered similarly unethical for providers not to prepare patients for the possible effects of an ICD on the quality of death?” Russo asked.

While currently there are no practice protocols to address deactivation, the American College of Cardiology, the American Heart Association and the Heart Rhythm Society recommend that patient education at the time of device implantation should include information surrounding end-of-life care.

During his analysis, Russo found that deactivation discussions at a patients’ end of life were not common. “Study findings also indicated that deactivation discussions were less likely when formal policies or guidelines for such discussions were absent,” Russo wrote. “One finding common to several studies was that most providers are reticent when it comes to discussing ICD deactivation with patients.”

Russo said that several factors may delay these types of discussions, including personal discomfort from patients and providers. “Also underlying providers’ tendency to delay deactivation discussions were a lack of experience and a need for guidance,” Russo said. He noted that one study by Hauptman and colleagues found that deactivation conversations were more likely to occur when physicians were cardiology specialists or had formal training in palliative care.

“When guidelines or policies addressing deactivation are present, or when a comprehensive interdisciplinary approach is used to foster deactivation discussion, deactivation at the end of life is more likely,” Russo noted. “Such models of care may also promote timelier discussions, lead to more timely deactivations, and prevent more patients from experiencing painful shocks as they’re dying.”

Russo offered that providers should ask ICD patients near the end of life the following questions:

  • What is occurring in terms of your illness?
  • What do you understand the role of [your ICD] to be in your health now?
  • What else would be helpful for you to know about your illness or the role [your ICD] plays within it?

Russo concluded that research of these types of care will be important to develop universal guidelines for the management of ICD patients who are at the end of life.