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Are you talking to patients about deactivation of their ICDs?
Electrical shocks produce pain, unnecessary suffering
The patient was dying of lung cancer and planned to die at home with his family nearby. Instead, he was raced to the emergency department as he died because his implantable cardioverter-defibrillator (ICD) kept firing an electrical impulse to restore his heart rhythm.
"The patient died in a busy emergency room, in a lot of pain, rather than in his home where he wanted to be," says Nathan Goldstein, MD, assistant professor, Hertzberg Palliative Care Institute, Mount Sinai School of Medicine in New York City. Goldstein is lead author of a recent study that looks at how hospices communicate the option of ICD deactivation to patients.1 "I was a resident in the emergency room at the time, and this incident is the reason I've researched the care of patients with ICDs," he explains.
His most recently published study shows that although 97% of the hospices responding to a survey admit patients with ICDs, only 20% of the respondents have a question on their intake form to identify patients with ICDs and only 10% have a policy to initiate and guide discussions of deactivation of the device. "This study is one of a series of research projects I've conducted to look at the management of ICDs in people at the end of life," says Goldstein. "We've looked at it from the perspective of bereaved family members and doctors, but hospices are at the front line of care for patients at the end of life, so we wanted to see how ICDs are handled in hospice care."
Throughout all of his work on previous studies, representatives from hospices have told him that this is one of the tougher issues they face, he adds.
Because ICDs are programmed to detect cardiac arrhythmias and shock the heart back into normal rhythm, a patient whose heart beats irregularly while dying will receive shocks that cause unnecessary pain for the patient and increased anxiety for family members, explains Porter Storey, MD, executive vice president of the American Academy of Hospice and Palliative Medicine (AAHPM) in Glenview, IL. "Some patients believe that deactivation will cause immediate death, or they believe the defibrillator is keeping them alive," he says. "They don't understand how the ICD works and how it differs from a pacemaker."
Although he can't prove cause and effect with the data collected in this survey, Goldstein was surprised at the correlation between deactivation rates and hospices with ICD policies. "There is a clear link between the identification of a patient with an ICD, a policy guiding discussions about deactivation, and a higher rate of deactivations," he says. "It makes sense that a hospice that has thought about the effects of an ICD's shock at the end of life is better equipped to initiate the conversation with patients and family members."
If no conversation about deactivation is prompted by the hospice, it is unlikely the patient or family would initiate the discussion, because they might not know of the option, Goldstein adds.
Start process at admission
Identification of an ICD occurs at intake for patients at Hospice of the Western Reserve in Cleveland, OH, says Trudi Kozak, RN, CHPN, clinical team leader at the hospice.
"We have a question on our intake form that asks patients if they have a pacemaker or an ICD," Kozak says. "The conversation about the option of deactivating the ICD starts at admission."
Chuck Wellman, MD, FAAHPM, chief medical officer at Hospice of the Western Reserve, says, "The decision to deactivate an ICD is a process, not a quick decision. In the first conversation, we present deactivation as an option the patient may want to consider at some point in their hospice care."
The nurse gives information about ICDs, reassurances that an ICD is different from a pacemaker, and an explanation of the ICD's shocking function, to patients, he says. "Some patients have had the device implanted for a long time, and they feel dependent on it," Wellman adds.
Whether patients choose to deactivate an ICD depends on their symptoms and how close to death they might be, says Kozak. "I had a patient in 2007 enter hospice with end-stage congestive heart failure, and he chose not to deactivate the device," she says. The patient was in poor condition when admitted, but after fine-tuning his medications, he improved and was discharged from hospice.
"He was admitted back to hospice in 2010 much sicker than before, and we discussed deactivation again," Kozak says. "This time he did deactivate the device because he knew he was near the end of life."
Four Seasons Hospice and Palliative Care in Flat Rock, NC, initiated a formal policy for ICDs about four years ago, says Janet Bull, MD, chief medical officer of the agency. "Patients with ICDs were a rare occurrence, so many hospices did not think about a policy," Bull says.
Even today patients with ICDs represent a small population, admits Wellman. "About 13 to 15% of our patients are cardiac patients, and only about 1 to 1½% of our patients have ICDs," he says. Even though the population might be small, an ICD that delivers repeated electrical shocks to the patient's heart as the patient dies is not consistent with hospice's goal of providing compassionate care at the end of life, Wellman points out.
"More patients have pacemakers but a pacemaker doesn't deliver a high voltage shock that causes pain, so that device is not the burden that an ICD is," he explains.
In addition to having a policy that requires identification of a patient with an ICD and guides a discussion about deactivation, hospices also should have clear guidance on the steps staff members should take to deactivate the device, says Storey. Although AAHPM does not have official recommendations or guidelines related to ICDs, the focus should be on the patient's comfort at the end of life, he says. The Heart Rhythm Society is preparing a set of guidelines for managing patient with ICDs and pacemakers at the end of life that should be released later this year.
Also, hospice staff members need to be prepared to honor a patient's wish not to deactivate, says Wellman. "It is difficult when the patient does not want the ICD deactivated and the family does," he admits. "Family members suffer a great deal of stress and anxiety watching their family member suffer pain, so they are more likely to want the deactivation."
The decision might be based upon the patient's personal experience with the device, says Storey. "Patients who have been shocked and understand the pain of the shock are more likely to choose deactivation, while patients who have never received a shock, are reluctant," he says.
Ultimately, the hospice staff's role is to provide information, moderate the discussion, and honor the patient's wishes, Wellman says. "Although we encourage a shared decision, the patient makes the decision," he says.
1. Goldstein N, Carlson M, Livote E, et al. Brief communication: Management of implantable cardioverter-defibrillators in hospice: A nationwide survey. Ann Intern Med 2010; 152:296-299.