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'Do not resuscitate' instructions often ignored, overlooked

Slowly dying of kidney disease as he entered his eighth decade, the patient decided he wanted to go peacefully. No electric shocks or breathing tubes if his heart or lungs suddenly failed, he said, as his caregivers recorded those preferences in the medical chart at his doctor's office.

But doctors at a Boston teaching hospital aggressively resuscitated him anyway when he was rushed there after falling ill during dialysis, then suffered a heart attack in the hospital. The hospital staff had no quick access to the records at his doctor's office, and no one at the hospital asked him what he wanted before he was too sick to speak.

"When we found out about it the next day, everyone was horrified," said Rose Cain, a geriatric nurse practitioner who had cared for the man as an outpatient and declined to identify him or the hospital to protect his privacy. "Those were not his wishes."

More than a decade after Congress required health care facilities to tell patients they can refuse life-saving treatments, many patients are still thwarted when they attempt to control the way they die, according to scientific studies and the accounts of advocates. Do-not-resuscitate orders are misplaced or overlooked in the hospital, or are not available at all because they are on record somewhere else.

Relatives designated as medical decision-makers are ignored. Requests for "no heroic measures" are interpreted too broadly.

For example, 13 percent of doctors surveyed at a large urban hospital said they'd start cardiopulmonary resuscitation on a hypothetical 48-year-old woman with advanced breast cancer who developed pneumonia, even though they were aware she had a DNR order, according to a study published in December in the Journal of the American Geriatric Society.

Another study of five major medical centers found that half of the doctors caring for seriously ill patients did not know that their patients wanted to forgo life-saving care and less than half of the patients who wanted DNR orders actually got them.

"A lot of people are getting care they don't want. I estimate it's occurring in one in 20 deaths," said Dr. Joan Teno, a professor at Brown University Medical School who studies end-of-life care. "That's far too high. It's a traumatic event. This is one thing we should be able to get right."

In the nearly three decades since the Karen Ann Quinlan case established a patient's right to die, Americans have increasingly turned to DNRs and other instructions about end-of-life care to avoid prolonged or painful deaths.

Studies estimate about 20 percent of Americans have some form of "advance directive," including living wills that describe a patient's wishes and health-care proxies that designate another individual to make decisions for the patient. DNRs are written by a doctor, nurse practitioner, or physician's assistant to spell out a dying patient's decision to refuse CPR and mechanical help with breathing. When DNRs are not honored, the problem is that sometimes doctors trained to save lives disagree with the DNR decision.

"There's still a fair number of doctors around who are uncomfortable with patients being DNR," said Dr. David Clive, chairman of the ethics committee at UMass Memorial Medical Center in Worcester. "It may be for personal or religious reasons or it may be their medical opinion that the patient is not sufficiently ill to warrant the DNR order. But it's important to realize that if the patient is competent, they rule the day, not the physician."

Doctors at odds with a patient on a DNR typically try to negotiate a resolution, Clive said. But at UMass, a doctor who decides against following a patient's explicit wishes is required to transfer the patient to another doctor.

More commonly, researchers and advocates said a mistaken resuscitation of a patient happens because of a communication failure.

Many doctors are uncomfortable discussing death and they avoid asking patients what they want. Even if patients and doctors have the conversation and the doctor issues a DNR order, that order isn't automatically shared with a hospital or ambulance service.

That happened at UMass Memorial two years ago. A 53-year-old woman dying of cancer was transferred from a nursing home to spend her final hours at the hospital.

But the nursing home did not forward the woman's standing DNR order and erroneously told the hospital there was none. The woman's shocked family arrived to find she had suffered a heart attack at the hospital, had been resuscitated, and was being kept alive on a ventilator. She died three days later after being taken off the machines.

"It's very unfortunate, but it is not uncommon," said Clive.

Ambulance crews regularly face similar problems. They're called by the families or friends of patients who have chosen to die at home. But unless the patient shows obvious signs of being beyond medical help or has proof of a DNR in hand, the crews are obligated by state regulations to try to revive them. Emergency medical technicians say families sometimes get abusive as they watch their loved ones undergo the very indignities they wanted to avoid.

"DNR has always been an area of controversy," said Sean Stentiford, director of clinical services for Fallon Ambulance. "You can't take somebody's word for it; you have to see the document."

To resolve this problem, the state has established a Comfort Care/DNR order procedure that provides patients with an official notice their doctors can fill out and they can post in their homes. They may also wear a special bracelet to alert caregivers and EMTs to their wishes.

So far, the state estimates between 13,000 and 15,000 people have used the bracelet, but the program has not been widely publicized and many patients and doctors are not even aware of it.

In the absence of a DNR, doctors have some discretion in whether to attempt resuscitation. Most opt to try unless it appears futile.

Even if there is a DNR or other specific instructions, there are often questions of interpretation. Does a DNR signed by a terminal cancer patient apply if they catch curable pneumonia? If the patient's living will says "no heroic measures," should the patient get dialysis or get morphine to make them comfortable?

Many doctors in a recent study by Dr. Mary Catherine Beach of Johns Hopkins University School of Medicine said they would withhold other treatments -- including blood transfusions and dialysis -- from patients with a DNR order. The same study found that 13 percent of doctors would perform CPR on a patient who had a DNR order. The result of all this confusion, said Karen O. Kaplan, president of Partnership for Caring: America's Voices for the Dying, is "the horrendous situation of people not receiving the kind of care they want." As a result, there's been a surge in "wrongful life" lawsuits in some parts of the country, she said.

Kaplan urges Americans to "stack the deck in their favor" by not only seeking out DNRs and designating health care proxies, but by having detailed discussions with their doctors.

Alice Dembner can be reached at Dembner@globe.com.

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