By Rob Stein
Washington Post Staff Writer
Sunday, December 17, 2006
When Carol Lewis's father-in-law died, family members circled his hospital bed to pray, expecting to offer their final goodbyes peacefully. Then his body suddenly started to lurch.
"He jumped," said Lewis, a nurse from Hadley, Mass. "Then he jumped again, and again. It kept happening."
Finally, two hospital staffers rushed in and placed a large magnet on the 86-year-old's chest, deactivating a device that doctors had implanted years earlier to zap his ailing heart if it faltered.
"It was very disturbing," said Lewis, whose father-in-law had no hope of recovering from a head injury he had suffered in a fall. "We all found it very upsetting -- so upsetting."
Similar scenes are playing out in intensive-care units, nursing homes, hospices and private homes around the country as the number of people with devices like the one that jolted Lewis's father-in-law has soared.
The implants -- small, internal versions of the paddles that emergency rooms use to shock patients' malfunctioning hearts -- are saving many lives. But in some cases they also are making the act of dying harder, forcing terminally ill patients and families to make wrenching decisions about turning them off. The devices subject some dying patients to painful jolts and can prolong suffering, traumatizing loved ones as the devices fire fruitlessly.
"It can be just awful," said Porter Storey of the American Academy of Hospice and Palliative Medicine. "The thing will shock them and shock them and shock them. Patients describe it as like being kicked in the chest by a horse. Their muscles convulse. If you are holding their hand you may even feel the electricity. It's quite jarring."
The problem is an example of the consequences of medical technologies proliferating before the ethical, psychological and logistic issues they raise have been resolved.
"When new technologies are introduced, they often come with new concerns and dilemmas," said Paul S. Mueller, a doctor and ethicist at the Mayo Clinic who has written about the ethics of deactivating the devices. "We often forget about that."
In response, some hospice nurses have begun carrying magnets in case a patient seeking a peaceful death starts getting shocked. Organizations representing hospices and doctors who implant defibrillators conceded that none has specific policies on handling such cases, although all said they plan to address the question.
Meanwhile, a small coterie of ethicists, palliative-care advocates and heart specialists has begun lobbying hospitals, hospices and nursing homes to quiz patients routinely about whether they have defibrillators and to develop procedures for honoring the wishes of patients who want them deactivated. They also want companies that make the devices to encourage doctors to raise the issue with patients when the devices are implanted.
"We're trying to get this on people's radar screens," said Jennifer Ballentine of the Colorado Hospice Organization in Colorado Springs. "It's more on the radar screen today than it was a few years ago, but we've still got a long way to go."
More than 500,000 Americans -- including Vice President Cheney -- have the devices, known as implantable cardioverter defibrillators, or ICDs, and the number getting them has been rising rapidly. At least 150,000 new ones are implanted annually. An additional 4 million patients are medically eligible for one.
The battery-operated devices, about the size of a pager, are implanted under the skin below the collarbone with wires running into the heart to monitor its electrical rhythm and deliver powerful shocks if it becomes dangerously fast or chaotic. As the first patients to receive the devices have started dying in significant numbers, concern about their downside has grown.
"This is becoming more apparent now as large numbers of baby boomers are coming into hospice age and starting to show up with these devices," said Walter Forman, a geriatrics expert at the University of New Mexico Health Sciences Center.
The devices, Forman and others said, can make the difficult process of dying even more arduous.
Helen Fryear, 64, of St. Petersburg, Fla., brought her husband home to die peacefully in his bed. But she watched helplessly in the middle of the night as his ICD shocked him more than 30 times.
"There's no word to describe it. It was horrible," Fryear said. "The only thing I could do was just hold him and keep telling him that I loved him and he wasn't alone until it finally stopped."
Aside from making the moment of death more painful for patients and traumatic for family, the devices can prolong suffering, especially for heart patients.
"They are short of breath, getting weaker and weaker. They feel like they are drowning," said Lynne Warner Stevenson, a Harvard Medical School heart specialist. "For them, these devices can convert a rapid death to a slow and miserable death."
Large, specialized doughnut-shaped magnets can disable ICDs in an emergency. And programming devices can permanently deactivate ICDs wirelessly. But often ICDs are not switched off, for a mix of reasons that reflect the fragmented medical system, the complex emotions and fears about dying, and sometimes just the difficulty of finding someone to do it.
Patients, families and doctors often simply forget to disarm the devices, even when they have decided to forgo other treatment.
"When you walk into the room and see a ventilator or a dialysis machine, that's a big reminder to talk about it. With defibrillators, it's small, it's internal. A lot of time we just don't think about it," said Nathan Goldstein, an assistant professor of medicine and geriatrics at Mount Sinai School of Medicine in New York.
Part of the problem, some experts say, is that ICDs are being implanted too often, sometimes when patients are already close to death or when the devices are likely to do more harm than good. Even patients for whom the devices are appropriate can find themselves dying of other causes, such as cancer, and might have lost contact with the heart specialists who are most likely to remember to raise the issue.
Other times the devices are not deactivated because patients and families are torn. They may not accept that death is inevitable. They may fear the decision will result in immediate death. Some patients, even if they are being tormented by repeated shocks, just see the devices as different from other care.
"Patients develop a complex relationship with these devices. It's inside them. They have been told this device is going to be with them to save their life. It becomes like a trusted friend," Goldstein said.
Earlier this month, Cathryn Devons finally decided to ask doctors at Mount Sinai Hospital to deactivate her 92-year-old father's device after it started going off repeatedly.
"It would be cruel to shock him continually in his last day of life," said Devons, a physician at the hospital. "He was dying, and the defibrillator became an obstacle to his dying in peace."
Although Devons encountered no difficulty getting the device shut off, patients and family members can meet resistance from cardiologists, who are sometimes uncertain whether it is ethical or liken the act to physician-assisted suicide.
"I've heard some doctors say they believe the device has become part of the patient's natural landscape -- somehow part of the patient's physiological makeup," Ballentine said. "They feel like tampering with it is a more active intervention, which makes them uncomfortable."
The logistics of getting an ICD turned off can also be difficult, especially with a bedridden or comatose patient.
Some doctors and nurses will go to a patient's home to deactivate the device, and companies that make ICDs will send a technician as long as there is a written order from a doctor and a physician or nurse is present. But officials from the three companies that sell ICDs in the United States -- Medtronic Inc., St. Jude Medical and Boston Scientific Corp. -- said they are hesitant to recommend that doctors discuss the issue at the time of implantation.
"We agree this is an important issue, but this gets into the practice of medicine, and we don't think it's our job to practice medicine," said David Steinhaus of Medtronic. "That's a decision that should be made between individual patients and their physicians."
At St. Jude, however, Mark D. Carlson said the company is considering training technicians how to deal with such cases, adding: "We expect this to happen more often in the future."