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Rewriting the Final Chapter (continued)

    Sometimes, of course, there's no chance to consult because parents are dealing with the death of a young child or infant. Losing a child is tragic under any circumstance, but when the family is criminalized, it compounds the tragedy, as one Lansing, Michigan, couple experienced. Before they could begin to properly grieve over the death of their newborn son, they had to clear themselves of murder charges.
    The year was 1994. Traci Messinger, who had undergone two Cesarean sections with her previous pregnancies, experienced additional complications in her third pregnancy. She and her husband, Greg, were warned that if their baby was born at that point -- 12 weeks prematurely -- he would have little chance of surviving; if he did, he would be in for a life of operations and blood transfusions. They told the neonatologist that they didn't want their baby to be resuscitated under those circumstances. Unbeknownst to the couple, the neonatologist signed herself out of the hospital that night, leaving a physician's assistant in charge of their case. She left instructions to "resuscitate anyway" if the baby appeared vigorous.
    Traci Messinger went into severe respiratory distress, and soon after, Michael Ryan was delivered. And though he was not vigorous, the physician's assistant attempted to resuscitate him against their wishes and had him hooked up to a respirator. When Greg visited the baby, he was horrified. "He was blue-gray, he was in a prone position, he was lifeless," he recalls, his voice quivering with anger and grief. "I said, 'Please take him off the respirator.'" The physician's assistant replied that she didn't have the authority to do so, and that he would have to wait for the neonatologist to return. The couple was taken over to see the infant later, because he was going to die. As Greg handed Michael to his wife to hold and comfort, the movement set off the alarms for the respirator and other machines hooked up to their son's tiny body. He stepped out in the hallway and asked a nurse to disconnect the alarm so they could quietly say good-bye.
    There was little opportunity to mourn. Soon after Traci was released from the hospital, the CEO called to explain that detectives were investigating their baby's "murder." The case went to trial and a jury took three hours to acquit the couple.

    Though the Messingers' case is an extreme example, judging from the experiences of some families, physicians need to learn to communicate better with dying patients and their loved ones, not only about prognoses but about their options, and their hopes and fears. They would do well to emulate the bedside manner of Dr. Steven Miles, a geriatrician and bioethicist at the University of Minnesota. Despite doctors' cries of time constraints in the age of managed care, Miles says, "I've never noticed that I'm able to save time by avoiding a conversation with a patient or family member. And the research shows that the effects of a single conversation are extremely therapeutic and long-lived."
    Of course the way doctors communicate is just as important as the fact that they take the time to do it. When interacting with dying patients, notes Miles, "There are two kinds of discussions: 'Joan, your cancer has progressed. Would you want to refuse a ventilator?' It's a stupid discussion," he says, because it makes the patient feel as if she will be abandoned unless she elects as much treatment as possible. A better approach, he says, would be to say, "'Your lung cancer seems to be progressing. What's the most important thing to you right now, because I'm going to continue to be your doctor. How do you want me to take care of you?'"
    Dr. Bernard Kaplan, a pediatric nephrologist at The Children's Hospital of Philadelphia and a faculty member at the Center for Bioethics, chaired the ethics committee at CHOP when conjoined twins Angela and Amy Lakeburg came to town. Born in Illinois in 1993, they were brought to CHOP to be surgically separated at their parents' request. Because the single, six-chambered heart that the twins shared wasn't strong enough to support them both, one had to die to give her sister a chance to live. The surviving twin, Angela, eventually died within the year, and the ethical implications of the surgery absorbed pundits and policy-makers in vigorous debate.
    But Kaplan doesn't want to dwell on the news-making twins now, except to complain about the intrusion of outsiders. "The conjoined twins were freaks of nature in the eyes of everybody," he says, his South African-accented voice rising in indignation. "And everybody who read, and everybody who talked, and everybody who wrote, and everybody who watched television about these little babies were voyeurs."
    Kaplan doesn't want to discuss the cost of their surgery, because then, "we're going to have to start talking about the cost of transplants and dialysis and congenital heart disease and leukemia and metabolic disorders Who will draw the line?" Nor does he want to talk about the futility of their separation, because "the only way surgeons can learn [these procedures] is by doing it." What Kaplan prefers to speak of, instead, are his principles for patient care, which include allowing parents to become intimately involved with medical decision-making for their children and supporting them regardless of their choices. "I believe the disease belongs to the child and his family, not to doctors and society."   
  
Continued...
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