Nobody really knows exactly how many Americans are walking around with pacemakers and defibrillators. But with surgeons implanting at least 225,000 pacemakers and 133,000 defibrillators each year, “there probably are a couple of million” out there now, said Dr. Paul S. Mueller…
The devices prolong lives, but “all those people will face decisions down the road,” Dr. Mueller said. “’Do I keep it going? Do I turn it off?’” Physicians have similar questions, including what kinds of patients confront these choices and who usually winds up making these decisions.
We know a bit more now that Dr. Mueller and his colleagues have reviewed the medical records of 150 Mayo Clinic patients who, over four years, requested that their devices be deactivated — the largest group of such patients examined to date. What the data show is that these patients are mostly male, quite old, very sick — and unprepared to deal with this issue.
“These patients typically are very ill. They’re approaching death,” said Dr. Mueller. Two-thirds were men; their median age was 79. In the years since they received their devices, many had developed other problems in addition to heart disease, including cancer and respiratory and neurological diseases.
Yet the majority hadn’t recorded their desire to deactivate their cardiac devices. More than half — a comparatively high proportion — had done what health care providers perennially urge and had prepared advance directives, but only one of those documents made any mention of cardiac technology…
“The consequence is, a huge number of surrogates had to make these decisions,” Dr. Daniel Matlock said in an interview, pointing out that about half of the requests for deactivation in the study came from surrogates. “Nobody wants that. People’s big concern at the end of life is not to burden their families…”
The Heart Rhythm Society and several other medical groups have issued a consensus statement saying that honoring a patient or surrogate request to turn off a cardiac device is both legal and ethical. Yet in 2008, when Dr. Mueller and his colleagues surveyed members of the Heart Rhythm Society and manufacturers’ representatives (frequently the people who do the actual deprogramming), about 11 percent said they regarded turning off a pacemaker as euthanasia.
In fact, two Mayo patients who requested deactivation of their pacemakers were refused by doctors, who have the right to decline, and died before another physician could take over or before a requested ethics consultation could take place. Three other patients did have ethics consultations (which can delay deactivation), because of family conflict, patient vacillation or a surrogate who didn’t appear to be following a patient’s wishes.
Once the devices were deactivated, death usually followed within a day or days, and almost always within a month…
Dr. Matlock argues that any doctor who knows how to implant a cardiac device — any doctor, period — can also learn to have a conversation about what a patient wants to do about it as the years pass, and to renew that dialogue (it should also include the matter of replacing I.C.D.’s when their batteries die, which requires additional surgery) at follow-up visits.
He and co-author Dr. John Mandrola, a cardiologist in Louisville, Ky., composed a simple script that says, in part, “I don’t want to be morbid, but I just want to remind you that you have control here. We can turn the device off at any time. (It is your device and your life.)”
But the current reality, Dr. Matlock says, is that “a lot of doctors would have trouble with this conversation. It’s much easier to say, ‘Your device looks fine. See you in a year.’”
That’s as far as some doctors care to take responsibility. Like telling a patient they need a discussion about dying – real soon – isn’t in their rulebook.
Our government has restricted the number of doctors so thoroughly that even the medical establishment is complaining about the overload. Perish the thought we now add in further training on ethical questions.
I’m not saying all physicians are as crass as, say, politicians. But, the Board of Directors of their med schools may be. 🙂