The patient had terminal cancer and was in his last stages of dying. Because of the expert pain management he had received from his hospice caregivers, he was comfortable and relaxed. As he started to fall into a deep sleep, his breathing, blood pressure, and pulse rate slowed.

Suddenly, the patient’s eyes popped open and his body jolted forward. He broke out in a sweat, his breathing became short and labored, his heart pounded rapidly in his chest, and he shook all over. This happened several times within a few minutes.

The patient and his family caregivers were terrified. What happened? Why was the patient suddenly in such agony, and why wouldn’t it stop? It was as if the patient had been electrically shocked—and in fact, he had.

The patient had an implanted cardioverter-defibrillator (ICD). When the device detected a fatal arrhythmia in the patient’s heart, which occurred naturally as he was imminently dying, it sent an electrical shock to his heart. This happened repeatedly until the patient’s exhausted heart simply stopped responding, and the patient died in severe pain.

The ICD had not been disabled when the patient was admitted to hospice care because it had been misidentified by his family and documented in his records as a simple pacemaker. The patient’s attending physician also had not discussed ongoing effectiveness of the device when conveying the patient’s terminal prognosis.

Sad scenario

This is a scenario that James B. Wright, D.O., associate national medical director for VITAS Innovative Hospice Care® , has witnessed one too many times. It’s a sad case, he explains, because once an ICD starts to shock a dying patient’s heart, there is nothing anyone can do to stop it or to ease the patient’s pain.

There are no medications that counteract a triggered ICD, and the powerful magnet or the technicians needed to deactivate it rarely are available on the spot. “It’s like having someone standing there with paddles, shocking your heart, when you’re going to die anyway,” says Dr. Wright. “It’s painful and pointless.”

And that scary scenario could become more common because the use of ICDs is increasing, notes Dr. Wright. “They are proving to be effective for people at high risk of heart failure, and Medicare has expanded its coverage of them, so more people are receiving them,” he explains.

A kick in the chest

These problems could be avoided if patients were fully educated about the devices and, once they are admitted for hospice care, if they were able to discuss their wishes about using or disabling their ICD, asserts Dr. Wright. But that’s often not what happens.

“People who have experienced an ICD shock have said it feels like being kicked in the chest by a horse,” says Dr. Wright, who is board-certified in hospice and palliative care. “But most people aren’t told that when they agree to get an ICD.”

If a patient with an ICD then is referred to hospice care—be it for a heart-related or another end-of-life illness—the hospice team should know about the ICD, so it can discuss disabling it as part of the patient’s plan of care, explains Dr. Wright. But that, too, sometimes doesn’t happen.

While it might seem logical for a patient with an ICD or family members to mention the device to a hospice physician, it might not come up if the patient is being referred to hospice for reasons that don’t concern the patient’s heart, or if the patient is imminently dying and the hospice team needs to address other critical symptoms, explains Dr. Wright.

Patients sometimes simply cannot communicate, have no informed family member or friend to help with the hospice admissions process, or have no written directives addressing their wishes for end-of-life care, adds Dr. Wright. All of these situations can contribute to complications with ICDs in hospice patients.

“Whether it’s the patient’s attending physician or cardiologist, or it’s the hospice physician, or all working in tandem, ICD patients need to be informed of the positive and possible long-term negative effects of these devices,” says VITAS Senior Vice President of Clinical Development and Bioethics Bob Miller. “At VITAS, our physicians and staff are experienced with and willing to help in this process.”

“We’re not advocating that ICDs be turned off,” concludes Dr. Wright. “We’re advocating that patients are made aware of the devices’ implications and the option of turning them off before death occurs is discussed so the patient and family can make an informed decision.”