Implantable defibrillators—small battery-powered electrical devices implanted in patients who are at risk of sudden cardiac death due to irregular heart rhythms—are lifesavers: more than 100,000 are implanted every year in the United States alone. But what happens when a patient is coming to the end of his or her life due to an illness that can’t be shocked away, and repeated shocks only cause unnecessary pain and suffering? Communication among patient and care givers is essential in these situations, and conversations about what will happen at the end of life should happen early, preferably when the device is implanted, according to a recent panel at UMass Medical School.
A recent instance involving a patient with an implantable cardioverter defibrillator (ICD) who was followed by physicians and nurse practitioners in the UMMS Division of Cardiovascular Medicine was instructive, and formed the basis of the thought-provoking presentation and panel discussion, “ICDs and End of Life Decisions,” moderated by Linda A. Pape, MD, professor of medicine. According to the panelists, patients with implantable defibrillators rarely have the devices deactivated upon admission to hospice care, resulting in possible discomfort due to unnecessary electrical shocks, which may cause greater stress and anxiety for the patient and family members. In the subject case, suggested by nurse practitioner Mary Lee Mattei, NP, and presented by Lawrence Rosenthal, MD, PhD, associate professor of medicine and director of the Electrophysiology Lab at UMass Memorial Health Care, an 85-year-old patient of UMass Memorial, whom Mattei had followed for many years, had end-stage cancer and was receiving hospice care at home. On the last night of his life, his ICD kept restarting his failing heart—more than 60 times—before he finally succumbed. (The visiting nurse finally thought to call Mattei, who was en route to the patient’s home to turn off the ICD when he died.) The expert panel included Julia Gallagher, MD, assistant professor of medicine and the medical director of the UMass Memorial Hospice Program; Christine Donahue, MD, assistant professor of medicine and a hospitalist; nurse practitioner Maggie Cabral, NP; and Theo Meyer, MD, PhD, professor of medicine and director of the heart failure program in the division of cardiovascular medicine. Their conclusions stressed the need for active communication among medical team providing care; an awareness of the implications of the decision to implant an ICD on end-of-life decisions; and a familiarity with how technology impacts care decisions, especially at the end of life. The experience of Mattei’s patient was not unusual. In fact, in a recent article in the Annals of Internal Medicine, researchers surveyed a sampling of hospice facilities across the United States on how frequently patients were admitted with ICDs; the frequency with which these patients received shocks; and existence of ICD deactivation policies and how often these were implemented, if they existed. Among the 441 facilities that responded, 97 percent reported admitting patients with ICDs, with 58 percent reporting that a patient had been shocked in the year prior to the survey. Despite these numbers, only 20 percent of facilities had questions on intake forms to identify patients with these devices, and fewer than one in 10 hospices had an ICD deactivation policy in place. “Hospice care providers are usually quite practiced at dealing with the complex communication issues surrounding end-of-life discussions with patients and their families,” said Dr. Gallagher. “But we often find not only is there no policy or protocol in place, but that physicians involved in the care haven’t confronted the issue before.” Earlier this year, a group of professional societies, the American College of Cardiology, the American Heart Association and the American Academy of Hospice and Palliative Medicine among them, issued a consensus statement on the management of ICDs in patients nearing end of life. The statement matched the conclusion of the UMMS panel: that communication before a patient is facing end of life care is emphatically preferable; Dr. Rosenthal went a step further and suggested it be a conversation that involves a patient’s primary physician at the time the ICD is implanted. “End-of-life decisions are among the most difficult we as health care providers must help families make. As death due to ventricular arrhythmias is reduced by ICD therapy, death due to other causes increases. It seems important therefore to put in place guidelines on how to manage ICDs in patients in a hospice environment,” said Daniel Roden, MD, a professor of medicine at Vanderbilt University and a member of the editorial board of Cardiology Today. “Shocks at the end of life are to me inappropriate.”