Our attention turns to the heart this time of year, as signs of Valentine's Day surround us. It is the organ that works harder than any other muscle in the body, with an electrical system that fires more than 3 billion times within an average lifetime. Starting with the first "whoosh" heard during an obstetrician's office visit and working until that flat line we see on all-too-many doctor shows, the heart beat is the most recognizable sound known to man.
More than 400,000 Americans each year take advantage of medical technology to replace a faulty cardiac electrical system or worn out heart muscle. But what happens when the rest of body is ready to die? Is there an appropriate time to flip off that switch? Rapid evolution of medical technology and our own lengthening life spans demand that we consider these questions.
In the past two decades, pacemaker use in this country has increased by more than 50 percent; globally, such devices have reached even the hearts of the Vatican, as we recently learned that Pope Benedict XVI has had one installed for many years. This technology is currently enhancing the quality of life for more than 3 million of us in the United States.
Mrs. Katz (who prefers her first name is not used) is one of us living with such a device. During her first appointment, she asked me a tough question about its use. Will her pacemaker keep her heart beating when the rest of her body is dying of pancreas cancer? Her question is one that is not considered often enough.
At 82 years old, Mrs. Katz has enjoyed a full, independent life thanks in part to the pacemaker. Mrs. Katz is now found to have pancreas cancer, which will be the likely cause of her ultimate death. In addition to our discussion about pancreas cancer, treatment options and goals of care, I took the opportunity to discuss with her some issues surrounding advance care planning, while she was still able to participate in such crucial conversations and make decisions for herself. Specifically, those decisions centered on the medical intervention she would want at the time of her death. With a bit of hesitation, Mrs. Katz asked me if her pacemaker would force her heart to continue beating -- even after she dies.
Pacemakers use low-energy electrical pulses to overcome a faulty electrical system in the heart. They can speed or slow a heart rate, control an arrhythmia, or coordinate the heart's chambers to improve overall function. The implantable cardioverter defibrillator is similar, but it can employ high-energy pulses to shock the heart and initiate a rhythm despite what were once fatal circumstances. In the 50 years since the implantation of the first pacemaker, these devices have saved thousands of lives. They cannot, or course, fend off death forever. Mrs. Katz knows she will die of pancreas cancer. Patients like Mrs. Katz should have the option of deactivating their devices to avoid painful shocks at death -- a time so many hope will be peaceful.
The American legal system has granted patients and their surrogates the right to refuse or discontinue unwanted medical treatment, even if that treatment is life-sustaining. Landmark cases have addressed the right to withhold chemotherapy and cardiopulmonary resuscitation, as well as the right to withdraw hemodialysis, artificial ventilation and feeding tubes. These cases do not distinguish between the types of life-sustaining treatment, but they do confirm respect for patient choice. End-of-life autonomy is an integral part of patient-centered care, and legal precedent provides patients the right to discontinue all life-sustaining treatment -- including cardiac devices.
During the dying process, the heart tissue is likely too weak to respond to the low-energy electrical pulses that pacemakers provide. Contrary to what many patients, families and some physicians perceive, a pacer's presence is not likely to change the process of this course. While Mrs. Katz's pacemaker will continue to deliver low-energy pulses at the time of her death, the heart muscle will stop responding. Mrs. Katz's decision to turn off her pacemaker at a time of her choice depends upon her own perception of how she wants to die.
A cardioverter's presence raises other critical issues. When the heart enters an unstable rhythm -- an eventuality at the end of every life -- the device delivers high-energy shocks to restore normal patterns. In the last weeks of life, a reported 20 percent of patients are painfully shocked. A recent study examining preferences for deactivation found that few patients have a good understanding of the benefits or potential burdens of their device. The Heart Rhythm Society addressed this in a consensus statement that considered ethical, legal and religious principles, concluding that each patient should have the opportunity to consider deactivation as part of their comprehensive end-of-life care planning.
While Mrs. Katz's fears were allayed that day in my office, too many other patients are caught off-guard by their failure to consider the end of life implications of their heart devices. Thorough and ongoing discussions about deactivation are essential for patients and their physicians, and they should begin at implantation. Though pacemakers may save lives, they should not deny the right to a peaceful death.
Mary F. Mulcahy, M.D., is an associate professor in the Department of Hematology/Oncology at Northwestern University, where she is part of the Public Voices Fellowship for the OpEd Project. She is the co-founder of Life Matters Media.
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