Lifesaving Devices Can Cause Havoc at Life’s End
By Barry Meier Published: May 13, 2010
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.
Dr. Wellman said about 2 percent of patients at the Hospice of the Western Reserve in Cleveland had defibrillators implanted.
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.
“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.
An earlier study by Dr. Goldstein of Mount Sinai that was based on interviews with relatives of recently deceased patients who had defibrillators found that a quarter of the terminally ill patients received shocks in the last month of their lives, including several patients who were shocked in their last minutes.
While implanting a defibrillator requires surgery, turning one off can be done simply by using an external computer programmer.
Dr. Rachael Lampert, a professor at Yale School of Medicine who led the group that wrote the guidelines being released Friday, says physicians have not addressed the issue more directly in part because medicine is so specialized.
“It is a difficult issue because care is so compartmentalized,” Dr. Lampert said.
Some medical facilities like the Hospice of the Western Reserve have had policies in place. “We realized that we had to address this in some fashion,” said Dr. Wellman, who said his facility adopted its first policy about a decade ago. He estimates that 2 percent of the terminally ill patients the hospice treats have defibrillators.
Discussions with patients or their relatives begin as soon as practical, Dr. Wellman said. About 20 percent of the patients who are asked choose to keep the device active, he said. In those cases hospice workers will frequently tape a large magnet to a patient’s chest when it is clear that he or she is dying, because a strong magnetic field will deactivate the device, Dr. Wellman explained.
While some physicians are addressing the defibrillator issue, the experience of Ms. Filak, the health clinic administrator at George Mason, suggests that the failure of physicians to do so can cause immense distress to a patient’s family.
Ms. Filak said she learned about the prospect that her dying father, Joseph Hoffman, might get shocked by his device soon after his terminal bile duct cancer was diagnosed in late 2008. At that time, Mr. Hoffman was given from two to six months to live, and Ms. Filak said she soon raised the issue of shutting off his defibrillator.
The heart specialist put her off, saying the problem was not her father’s heart but cancer and they could talk about it later, she said.
Her father’s oncologist also would not turn off the unit, saying it was the cardiologist’s call, and a hospice nurse who was treating him at his New Jersey home, also deferred to the heart specialist, she said.
“Because it was cancer and not heart-related, they didn’t want to get involved,” Ms. Filak said. “They never asked him about it.”
Meanwhile, time was passing and, as the end of Mr. Hoffman’s life drew closer, Ms. Filak became more perturbed about what might unfold.
“Could you imagine, we are all at his bedside and see him jerking around,” she said. “It would have been horrible. My mother. I could not imagine what she would do.”
Finally, on a January day last year, Mr. Hoffman slipped into a coma. Ms. Filak immediately called his cardiologist and demanded that he send someone to switch off the device. About six hours later a technician arrived to do so. Mr. Hoffman, who was 81, died peacefully the next day.
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