Lifesaving Implants Complicate Eno-of-Life Care

Two weeks ago I wrote about an article in The New York Times about one medical reality that few people are facing up to is what to do with their cardiac devices.

Today’s Boson Globe has a similar article; Lifesaving implants complicate end-of-life care.

With more than 100,000 defibrillators and at least twice as many pacemakers implanted in aging patients in the United States each year, what to do with these devices in terminally ill patients is becoming a growing issue. Professional societies have issued calls for physicians to address with patients the issue of when to deactivate a defibrillator or pacemaker — implanted devices that can regularize a too-fast or too-slow heartbeat. However, a recent study found that nearly one-third of patients with defibrillators were still receiving shocks in the last 24 hours of their lives. Additionally, half of patients with a do-not-resuscitate order still had their defibrillators turned on in the final hour before death. That unwanted defibrillator shocks occur at the end of life represents an unintended consequence of the technology’s success.

Dr. Nathan Goldstein, associate professor of geriatrics and palliative medicine at Mount Sinai Medical Center, conducted a study in the early 2000s that revealed that up to 20 percent of patients had received a defibrillator shock in the last days to minutes of their lives. Doctors had discussed deactivating devices in a minority of cases and when they did, these conversations often took place just a few days prior to the patient’s death.

These findings drove Goldstein to study the barriers that prevent these discussions. His team interviewed general cardiologists, electrophysiologists — subspecialized cardiologists who are trained to manage irregular heart rhythms — and internists. The doctors described systemwide issues such as the lack of long-term relationships with patients and sufficient time in the office, and discomfort discussing end-of-life.

“When you start talking about . . . turning it off, then you are sort of shutting off the hope,” one physician said. Additionally, doctors pointed to barriers unique to the ICD, specifically that a small, internal device doesn’t provide a clear physical reminder to prompt a conversation.

“The defibrillator discussion is really hard. You have to get a feel for what a patient’s level of understanding is and where they’re at, because if you’re not nuanced about it you can really mess people up,” said John Mandrola, a Kentucky electrophysiologist and columnist for theHeart.org, who has seen older and sicker patients referred to him for ICD placement in recent years. “We are doing better in terms of how we’re implanting these devices. But we’re not doing better in terms of getting people to understand what to expect from them.”

In the absence of information, patients hesitate. In a separate study of patients with ICDs, participants were not aware that deactivation was an option. When made aware, they did not want to discuss deactivating their ICDs. One patient in the study described deactivation as “like an act of suicide.” When it comes to turning off a pacemaker, which could lead to death even more quickly for someone whose heart is dependent on the pacemaker’s function to beat, some physicians balk, too.

For Goldstein, the challenges that continue to plague cardiac device deactivation — coordination of care between specialists and generalists, discomfort surrounding when to initiate conversations about serious illness and who should have these conversations — are a microcosm of the general problems that plague end-of-life care.

Goldstein has secured funding from the National Heart, Lung, and Blood Institute for a study across multiple hospitals to improve the frequency and quality of conversations about ICD deactivation. Cardiologists enrolled in the study will attend a training session on how best to communicate with patients. These doctors will receive reminders when a patient coming to the clinic might benefit from advance planning. Researchers will monitor how many conversations occur, the number of ICDs deactivated, and whether this intervention improves mental health outcomes for caregivers.

“Thinking about someone shocked by an ICD at the end of their life is quite graphic. It makes you stop and say, ‘that’s horrible.’ But it’s not just about the ICD,” Goldstein said. “That might be what grabs our attention. But this is about how we improve communication and change clinician behavior in general. That is what we’re struggling with.”

If you or someone you know could benefit from structured assistance in family decision making, contact Falmouth Mediation at 508-566-4159508-566-4159 for a free, no-obligation, private, confidential consultation. We will be happy to discuss the key details of your situation, address any concerns and help you decide if elder me­diation would be beneficial.

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