With heart disease a leading cause of death in the U.S., millions of Americans have gained extra years of healthy living from pacemakers and implanted defibrillators. But what happens when someone with terminal illness has a pacemaker that continues to regulate her heartbeat? Or a defibrillator that emits shocks when his heart stops?
According to a 2012 study in the Journal of the American College of Cardiology, 2.9 million Americans received permanent pacemakers between 1993 and 2009, and there is steady growth in use of permanent pacemakers in the U.S.
That means millions of us will face some difficult end-of-life choices. A recent Boston Globe article cites the case of a man with terminal lung cancer who had hoped to die at home with hospice care; instead, he lay on an ER stretcher as his internal defibrillator repeatedly shocked his heart to keep it from stopping. The family finally agreed to deactivate the device, and the man died in the emergency room.
Had the patient and his physician determined this course sooner, his days would have been shorter—but he would have died as he had hoped, at home, with dignity.
Have the Conversation Before a Medical Crisis
While there is no easy, one-size-fits-all answer for when to deactivate lifesaving implants, it’s important to have the conversation with an aging parent or loved one before a medical crisis forces the issue.
In an ideal world, your loved one’s physician should broach the subject when it becomes clear that end of life is near. But doctors who are committed to prolonging life may sometimes skirt or resist the discussion. This is the time to ask for a second opinion.
When a loved one is ready for hospice care, the question of when to deactivate an implant should be part of the intake discussion—even if the individual is not yet near death. Pacers are probably the most common devices, but there are others to consider, as well, such as insulin pumps. Ultimately, the decision is up to the patient, if mentally competent, with advice from a medical professional; but family members, close friends and other sources of emotional support, such as clergy, may provide comfort and perspective. The patient’s health care proxy should be included or kept informed of all advanced directives.
Lack of Coordinated Care Can Impede Timely End-of-Life Decisions
While awareness of this issue is growing slowly, the practice of deactivating pacemakers and defibrillators for the terminally ill remains a sensitive issue. In Massachusetts, the Medical Orders for Life-Sustaining Treatment (MOLST) does not yet include an option regarding whether or not to turn off a pacemaker.
According to the Globe article, many patients and physicians are reluctant to consider shutting off lifesaving implants. For the patient, it can feel like a decision to commit suicide. For the physician, too-short office visits or lack of a long-term relationship with the patient can discourage the discussion. Lack of coordinated care between internists and specialists also can prevent a thoughtful, timely conversation about advanced planning for end-of-life care.
Ultimately, when confronting terminal illness, we are each responsible for our own end-of-life decisions. As medical technology works miracles to extend lifespan, ethical decision-making about when to leave the body to its own, natural process of dying will become more complex—and all the more necessary.
President of Deborah Fins Associates, PC, since 1995, Deborah Liss Fins is a licensed independent clinical social worker and certified geriatric care manager. Drawing on more than 30 years of professional experience in geriatric care management, DFA offers comprehensive assessments and planning, guidance in selecting appropriate care, help identifying resources for financial support and professional consulting. Please contact us to set up a complimentary initial telephone consultation.
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