NEW YORK, NY / The New York Times / Health / May 14, 2010
By Barry Meier
When her father’s cancer became terminal, Carol Filak realized that making his final days comfortable involved something she had never thought about — turning off his heart defibrillator.
Dr. Charles Wellman, medical officer at a hospice with a policy on deactivating defibrillators.
By David Maxwell for The New York Times
A doctor friend told Ms. Filak about horrible scenes he had witnessed in which a defibrillator had shocked a dying patient, causing pain and terrifying family members gathered at the bedside.
But when Ms. Filak tried to get the device deactivated, she was bounced around for weeks by her father’s doctors, including his cardiologist, she said.
“All I thought about was getting this thing shut off,” said Ms. Filak, who is the director of the student health clinic at George Mason University in Fairfax, Va.
Defibrillators are a modern medical miracle, small implants that save lives by sending an electrical jolt to interrupt a potentially fatal heart rhythm and restore normal beating. But with a rapidly growing number of patients in this country getting the devices, they are increasingly posing a bionic challenge near life’s end, for both patients and their families.
Specialists say that a failing heart often begins to beat in the same type of wildly erratic rhythm that a defibrillator is programmed to recognize and intercept with a jolt. And though doctors and patients routinely discuss end-of-life issues like withdrawing medications and resuscitation attempts, studies suggest that what to do about a defibrillator rarely comes up.
On Friday, the Heart Rhythm Society, a professional group representing cardiologists who implant heart devices like defibrillators, plans to issue guidelines in an effort to promote such talks. Among other things, the guidelines, which were developed with other medical organizations, emphasize that doctors should discuss possible device deactivation with patients at the time of implantation and periodically afterward.
Other groups have issued guidelines in recent years but evidence suggests that they have not taken hold. A study published in March by researchers from the Mount Sinai School of Medicine in New York found that only 10 percent of some 400 hospices that responded to a survey had formal policies in place to discuss defibrillator deactivation. About 60 percent of patients in the hospices with defibrillators still had the shocking function active, the survey found.
“Doctors are not comfortable with these discussions,” said Dr. Nathan Goldstein, who led the Mount Sinai team. “They are used to thinking about these devices as saving lives.”
Meanwhile, some dying patients have chosen, when asked, to keep the device active, particularly if it has fired before, saving the patient’s life.
Dr. Wellman said about 2 percent of patients at the Hospice of the Western Reserve in Cleveland had defibrillators implanted.
“Some patients are reluctant to turning it off when they perceive it as something that has saved them,” said Dr. Charles Wellman, chief medical officer of the Hospice of the Western Reserve in Cleveland.
An estimated 650,000 people in this country have either a defibrillator or a more complex device that combines a defibrillator and a pacemaker. That number is expected to grow because of the aging population and the use of such implants in a broader class of heart patients. About 10,000 patients a month now get the devices, often for the first time.
The lives of many of these patients, who have heart disease or genetic conditions that put them at risk of sudden cardiac arrest, will be extended by the implants. But while their heart problems may not kill them, they will eventually succumb, be it due to accidents, illnesses like cancer or simply old age. [rc]
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