When is extraordinary lifesaving care appropriate?

A baby boy was born at full term but via an emergency Cesarean section, with a mysterious, intense skin reddening. Immediately following birth, he was put into the pediatric intensive care unit in the hospital where I work. Over the next three days, he had multiple organ failures—of the myocardium, lung and liver. On his fourth day of life he had a major seizure. Studies showed intracranial bleeding, described by the pediatric neurologist called in to see him as “the worst I’ve ever seen.”

The baby was transferred to a medical center where he received extensive evaluation and supportive care. The family decided on a “No Resuscitation, No Extraordinary Measures” order and made that clear to the doctors. No cause for the bleeding or other aspects of his condition was ever found. The outlook presented to the family by pediatricians was very grim, and he was not expected to leave the hospital.

Still in the first week of life, the boy was not swallowing well and was regurgitating so often that a Nissan operation was considered. This procedure cinches up the esophageal-gastric junction to prevent gastric reflux. The family approved the surgery, but unknown to the family, the surgeon also inserted a gastric feeding tube brought out through the upper abdomen. Given nourishment via the feeding tube, the child began to hold his own and gradually improve over a period of several weeks.

Today the child is a couple of years old and weighs around 30 pounds. He is still fed through the tube, never swallows, has no excretory control, has never rolled over, cannot sit up, receives anti-seizure medication, makes no purposeful movements other than occasional random arm waves, does not crawl, does not speak or respond to commands and basically has an IQ of zero. His medical bills have totaled nearly $1 million so far, with the local county government bearing most of that cost. The family is responsible for the insurance copayments, incidental care and other costs amounting to more than a third of the family’s income.

A young family is blessed with a son, but burdened with that son being a clearly nonfunctioning human being. “Miracles” do occasionally happen in medicine, but there is no miracle for this unfortunate family. The question is, what should have been done and what should not have been done?

“There is no legal or theological basis, in Catholicism, Judaism or the majority of Protestant faiths, for keeping alive by artificial means someone for whom there is no possibility of recovering,” says Sherwin B. Nuland, M.D. ’55, HS ’61, clinical professor of surgery and author of How We Die: Reflections on Life’s Final Chapter. He points out that in the landmark 1976 Supreme Court case of Karen Ann Quinlan, who was in a persistent vegetative state and whose parents had sought for her to be removed from life support, her priest and the local bishop believed that she should be allowed to die. (Removed from life support, she lived on in that state until her death in 1985.)

A founding member of the Yale-New Haven Hospital Bioethics Committee, Nuland notes that fear of legal ramifications often drives doctors to pursue extraordinary means to keep their patients alive, sometimes even in violation of expressed patient and family wishes. The courts have consistently supported patients, their families and physicians who choose not to have “heroic” measures taken to keep a loved one alive. “I think fears of legal repercussions are unfounded,” he says. “The medical team needs to make clear the various scenarios if they do or do not intervene. Then it all gets down to the wishes of the patient or the closest kin. This was a violation of the family’s hope, and of their intentions for their child.”

He believes that the physicians erred at many levels. “There is no way for people of any knowledge to disagree about what this child’s outcome would be. There is no possibility that the physicians did not know this.” Nuland believes that, by pursuing surgical procedures, the pediatric surgeon violated several moral and ethical principles. “The only criterion for a treatment decision should be the patient’s welfare.” He suspects that the surgeon may have operated on the patient because the “case was a rare opportunity to improve his or her technical skills in operating on a tiny baby. He was prolonging this poor child’s life by carrying out procedures that make no sense whatsoever. The physicians knew this. This seems morally and ethically reprehensible.”

He believes that a physician must look at the goals of any therapy he or she undertakes. “They seem to have decided the goal was to discharge the patient from the hospital. To me the goal is what makes most sense for this family and this child.”