Questions of Life and Death : Deciding when--and how--to prolong life is always tough. With children, it seems impossible.
The baby was not quite dying. And that was the problem.
He had spent the last month in an intensive care nursery, breathing tubes down his throat, IV lines in his tiny arm, his tiny foot, little dark goggles taped across his eyes.
The doctors and nurses who have been giving him morphine every few hours have lost all medical hope for his recovery. Now, they are weary of his care, of his pain.
Still, the parents plead, don’t stop.
About halfway between her 12th and 13th birthdays, the girl decided it was time to die. Her frail body, ravaged by years of cystic fibrosis, already was dying. Hours after she was admitted to Childrens Hospital of Los Angeles with severe lung disease, the child asked to go home.
It broke their hearts, yet her parents understood. But her doctor, who had saved this child’s life so many times, wanted to try another course of antibiotics. He wanted to save her again . . . if only for a little while.
The difference between moral dilemmas and ethical ones, philosophers say, is that in moral issues, the choice is between right and wrong. In ethics, the choice is between two rights.
When children are very sick, the most aching choices are the ethical ones: Should doctors and nurses employ all their medical powers to keep a baby alive to spare a family who can’t give up hope? Should a long-suffering 12-year-old be permitted to dictate the terms of her own death?
Enter the ethics committees, the umpires of modern medicine. In more than half of all U.S. hospitals, they struggle to balance respect for the sanctity of life with the quality of that life.
While the issues surrounding adults are more and more in the public domain, it may be the uncharted territory of a child’s right to live or die where most emotional land mines are buried.
Legally and socially, children are unique. While older patients are guaranteed certain legal and medical rights, very young children have little access to those rights.
Infants and toddlers, for example, cannot articulate consent to painful treatments, or even say where it hurts. If their pain is acknowledged, it is difficult to measure and, some believe, to safely treat.
And for children under 2, even the most final of diagnoses--brain death--can be elusive because their brains are still developing and responses are not easily interpreted.
Within this largely unexplored world of pediatric bioethics, the complex, troubling questions that can surround the end of life are magnified because they come at the beginning of life.
Dr. Cheryl Lew cares for some of the tiniest and sickest babies in Southern California. Every day, she and the parents of her patients in the 37-bed Neonatal Intensive Care Unit of Childrens Hospital struggle together with the question of whether and when to forgo lifesaving treatments.
While it is never easy, she says, sometimes it seems impossible. Sometimes parents disappear, sometimes they die, sometimes they are impaired or incompetent to act in the child’s best interest.
Lew recalls the case of a 3-month-old with “horrible, horrible lung disease. . . . Her mother was a chronic alcoholic. You could usually smell it on her breath. She didn’t visit often. And when she did, she never, ever wanted to hear bad news.”
But the news was bad. The baby seemed to have permanent brain damage and the staff wanted the mother’s OK for a DNR--a do-not-resuscitate code--in the event the baby’s heart stopped.
Time after time, the mother broke appointments to meet with the baby’s caretakers. “We’d get the mother in and talk for five minutes and she’d jump up and say, ‘I can’t take it anymore,’ and run out,” Lew recalls. The baby’s nurses grew frustrated and angry. “It’s futile,” they told Lew and called in the ethics committee, who urged Lew and the nurses to try again.
Within the week, they persuaded the mother to talk with them about the DNR. “You’re breaking my heart,” the mother said, but added, “I know if my baby’s heart stops beating, she’s dead. You’re not God. You can’t bring her back.”
Then, says Lew, the mother jumped up and screamed, “You’re just breaking my heart!” and ran out of the hospital.
Was that a “yes”? asks Lew. “We felt that it was, so I wrote the order not to resuscitate. Even though the baby had been having a relatively good day, the heart rate monitor suddenly flat-lined . . . I honestly believe that baby didn’t die until her mother was able to accept it.”
Bioethics, the discipline that guides decisions in medical policy, practice and research, is a new concept and a new term. The word only entered the language in 1971, according to Webster’s Ninth Collegiate Dictionary.
Traditionally, the doctor-patient relationship has been inviolate. Doctors were thought to know what was best for their patients, and patients trusted them to act accordingly.
But as patients grew bolder and doctors more specialized, medicine’s only moral code--the Hippocratic Oath--was found wanting. A new context was needed for sorting out the thorny questions raised by the medical revolution of the 1960s.
Now the routine rescue of extremely premature and severely handicapped babies was possible. But the high-tech machinery of the 1970s that was saving them condemned some to a lifetime of disability and pain.
Federal law requires doctors to treat all newborns except where it would be “futile.” In most larger hospitals, that is taken to mean that any baby whose heart is beating and who weighs at least a pound will be resuscitated.
“We all pretty much agree we should be as aggressive as we possibly can right at the outset,” says Dr. Miriam Wilson, a neonatal ethicist at Los Angeles County- USC Women’s Hospital. “Unless a baby is actually born dying, we are in no rush to remove life-sustaining technology.”
“If we’re going to err,” says Dr. Bruce E. Zawacki, chairman of County-USC Medical Center’s ethics committee, “it’s going to be on the side of life. The mortal sin of ethics is jumping to a conclusion.”
The problem is, or becomes, when to stop the life-sustaining treatment. And for that dilemma, there are no federal guidelines.
Dr. Antonio Galvis says he is not a religious man. But there is a Holy Bible on the bookshelf above his desk. The veteran ethicist and pediatrician at Childrens Hospital keeps it there to remind him of “a certain miracle.”
“We had a child who was very, very sick. His parents could not accept the idea he might be brain dead. They were hoping for a miracle. So we sat down here on my sofa and we held hands and prayed for the miracle to occur. I was very sure it would not, but overnight the parents and I became close friends and we negotiated a deal. The mother had contacted maybe 10,000 people praying around the country. I said we would give the prayers 48 hours,” says Galvis.
“And the parents waited and so did I and after the time, I examined the child with them in the room and we discontinued the ventilator and the child’s heart stopped . . . The miracle was that we all were able to accept that and a year later, the parents came back and gave me this Bible. I keep it right here because, although I believe in what I see, there are some miracles . . .”
By law, parents hold the power to make most medical decisions for children under 18. It is rare and often only through court intervention that their wishes are ignored.
Pam Mohr, director of Legal Counsel’s Children’s Rights Project, believes the interests and desires of children, even very young ones, are being taken more seriously now than perhaps at any time in history. “We still have a long way to go, but we certainly are acknowledging older children’s rights to make decisions--at the very least to participate in decisions,” she says.
But what happens when the rights of children conflict with parents’ rights? What happens for example, when the right of a child to receive sophisticated medical care threatens a parent’s right to privacy?
In the field of medical genetics, “we’ve got ethical questions coming out our ears,” says Dr. Richard Koch of Childrens Hospital, which handles the most pediatric cases of any hospital in the county.
“Now that we can look into people’s chromosomes, it’s possible to find out all sorts of things about a family. Most often,” he says, “we find out the ‘father’ is not the father. The ethical problems this poses are tremendous.”
Earlier this year, the hospital’s ethics committee helped a cancer specialist decide what was the right thing to do when his search for a bone marrow donor for a child with leukemia revealed that the patient and her brother were fathered by different men.
Does the father have the right to be given such explosive information? Often, the answer is no. Koch’s practice is to talk to the mother alone. The cancer specialist simply told the family the sibling was not a suitable donor. “In fact, that was all we were testing for,” he said later. “There seemed to be no medical reason for sharing further details that could only devastate the family.”
Disease can destroy the body, but pain can destroy the soul.
Nurse coordinator Sherry Hirschberg seems to be quoting her favorite ethicist--Professor Edwin Lisson of St. Louis University--a lot recently. They describe what Hirschberg sees as a major ethical issue on 4 East, the toddler wing of Childrens Hospital.
“These children are very, very sick. We see kids who’ve fallen out windows, been hit by cars, nearly drowned, had organs fail, undergone surgery . . . We don’t want them to be in pain and we do our best to see that they aren’t.”
On at least two occasions, that has meant going to the ethics committee. “It is not safe for a baby to be in pain,” says Hirschberg, “and if a child is in pain and the doctor doesn’t give sufficient orders for pain medication, then (nurses) have to do something about it.”
But the issue of treating pain is not as straightforward in children as in adults. Infants and small children may feel pain more intensely than adults, according to recent studies, despite the long-held belief that their nerve endings are not fully developed. That, coupled with a historic reluctance to risk slowing a baby’s breathing with painkillers, has made the nurses’ efforts at “pain enlightenment” an uphill battle with a few of the hospital’s admitting physicians.
In one case, a nurse stepped in when no morphine had been ordered for a child coming out of painful surgery. “Our nurses are expected to advocate for their patients, to act in the best interest of the child,” says Hirschberg, who sits on the ethics committee and co-chairs a separate Nurses Ethics Council. “Sometimes the best way to do that is to talk to the doctor and get the pain medications; sometimes it is to hash it out with the ethics committee.”
Another nurse recently took it upon herself to photocopy recent articles on pain management for a doctor who feared addicting his patients.
“You can’t talk about any of these quality-of-life issues,” says Hirschberg, “until you deal today, right now, with the reality of (children’s) pain and their suffering.”
In his landmark book “Medicine and Morals,” published in 1953, theologian Joseph Fletcher called the power of choice the most valuable gift of contemporary medicine. Yet that power has also posed the most wrenching medical dilemmas.
The variety of options available today can confuse, frustrate, even paralyze. Sometimes, parents cannot bear the thought of even the sickest children dying; doctors may balk at backing off from even the most hopeless cases.
As technology advances and the choices increase, deciding among them will become no less agonizing.
Monday: What is the cost--financial and emotional--of deciding which children will live and which will die?
