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Breaking News
Extending Life, Defibrillators Can Prolong Misery



Dr. Lynn Warner Stevenson, with a patient, Gerald R. Chauvette, called implantable defibrillators for heart patients a double-edged sword.

The patient, a man in his 60's, arrived at the Cleveland Clinic Foundation hospital in acute discomfort. His defibrillator, a tiny device implanted in his chest to correct abnormal heart rhythms, was going off six times a day or more, with a jolt that felt like a boxer's punch to the chest.

The defibrillator was working properly; the man's heart disease was so advanced that his heart rhythms kept going awry. As the man lay in his hospital bed about two years ago, "it was getting to the point where it was happening once an hour," his cardiologist, Dr. Michael Lauer, recalled.

The doctors tried to calm the man's heart, to no avail. "We were all gathered around his bed, five or six doctors, and we didn't know what to do," Dr. Lauer said.

It was Dr. Lauer's first experience with a condition that he and other medical experts say they are seeing more often. It was unforgettable.

Finally, the man spoke up. "He said: `I've had enough. It's time to stop,' " Dr. Lauer said. "He knew exactly what that meant."
The doctors turned off the man's defibrillator. Shortly afterward, he died.

Defibrillator storms, as doctors call the condition the patient was experiencing, are still rare. Still they create a painful predicament that is expected to become more common with results from a study released last week. The study suggested that implantable defibrillators may improve survival rates in millions of heart patients. But what happens when an advance that prolongs life also prolongs a patient's misery?

The device, which costs $20,000, plus $10,000 for the operation to insert it, is already approved for people (including Vice President Dick Cheney) who have heart rhythm disturbances that can be corrected by electric shocks to the heart. About 80,000 Americans have the devices, and since 1996, when they were approved for patients like Mr. Cheney, their use has been increasing by about 50 percent a year.

The new study, reported in The New England Journal of Medicine, found that the device could also help a much larger group of patients, those who have serious damage from heart attacks and are at risk for arrhythmias, but have not had them.
About four million patients in the United States fall into this category, with 400,000 added each year. In the new study, the devices reduced the mortality rate among such patients by 30 percent in 20 months.

Many heart experts welcomed the finding. But even some who did said it would confront society with medical and ethical questions that few had anticipated. The devices can fundamentally change the end stages of heart disease, giving years of life to people who would otherwise die.

Some experts are asking whether the devices are going to create a new generation of patients who die slow and painful deaths.

"Clearly, the defibrillators are a marvelous breakthrough," said Dr. Lynn Warner Stevenson, the director of the cardiomyopathy and heart failure program at the Brigham and Women's Hospital in Boston. "For patients who are living a good quality of life, the defibrillators can prevent a tragic, premature end to that life. But they are a double-edged sword. As the disease gets worse, the mode of death is not an attractive one. And we are not preparing patients for that."

Other experts, like Dr. Arthur Moss of the University of Rochester Medical Center, who directed the new study, say the fears are exaggerated. Dr. Moss is continuing to follow the patients in the study, asking questions about the quality of their lives, and what he sees so far indicates that the vast majority of patients are fine. He said that just 12 of 742 patients with defibrillators in his study ended up having them turned off, and he remembers only one who had a defibrillator storm. The other 11 had fatal diseases including congestive heart failure, stroke and cancer.

Dr. Leslie Saxon, the director of implanted-device services at the University of California in San Francisco, said some patients had defibrillator storms, but more often they had years of good living, free from the terror of an arrhythmia that could kill them at any moment.

But rare events in a large group can still mean many people will be affected.

"A medical technology can create some rather serious problems that may not have been seriously thought out up front," Dr. Lauer said.

Dr. Stevenson noted that medical care had become so fragmented that doctors implanting the devices in patients still functioning well could have a very different impression from doctors who care for people in the end stages of heart disease.

Medical experts say it is hard to know what to expect — how many heart attack patients with the devices will have defibrillator storms or other complications and how many will survive only to develop congestive heart failure. Another complication is that the defibrillators may also accelerate the course of the underlying heart failure.

"As we are making these decisions, it is not rational just to look at the positive side," Dr. Stevenson said. "We need to look at the whole equation."

The problem, she said, is that with little data, risks are hard to quantify.

"When I first started taking care of patients 20 years ago," Dr. Stevenson said, "we did not see patients who would be suffering for months and months before death." Now, she said, many patients find themselves agonizing over whether to have
defibrillators turned off.

Dr. Stevenson emphasized that turning off a defibrillator was not like turning off a ventilator. "It is not an immediate end," she said. Sometimes a patient lives for months.

She advocates discussing the issues with patients while they are relatively healthy and before they have the defibrillators implanted. "We have to talk to people about preventing death, designing our mode of death, when to intervene to change when we die," she said.

Other cardiologists said they were not inclined to discuss end-of-life issues with people who might have years of good life ahead of them.

Dr. Saxon, of San Francisco, said: "I focus on how we're going to get you better and improve things for you and your family. I can't deny you something because five years down the road it might not be the best thing for you. I'll deal with the five-year thing when it comes up.

"I really think the news is good. The challenge is getting the patients to be aware of the fact that they have some risk."
By GINA KOLATA
for The New York Times