Dying boy kept in hospital despite mother’s plea
Doctors refuse to honor DNR order request
The situation: A 9-year-old boy with a six-year history of chronic insulin-dependent diabetes developed leukemia and was hospitalized after a fall and unusually stark bruising. Despite the diagnosis and prognosis of a likely five-year survival rate, the child soon began to face one medical complication after another.
During the first six weeks of his hospitalization, the boy developed an infiltration of the intestinal wall that resulted in bowel perforation and diffuse intraperitoneal fecal contamination. He needed an ileostomy. Then he experienced necrotizing fasciitis of his abdominal wall and upper thighs, and his incision began to leak. Complicating the boy’s treatment was the development of renal insufficiency. This condition gradually improved, but drug therapy was compromised. He had significant problems eating and was not getting the nutrients he needed to fight these infections. During treatment for his leukemia, the boy developed the common side effects. Finally, he developed peritonitis in his urine.
"The child was in a lot of pain, but he was stoic and quiet," says a pediatrician on the supportive care team later consulted. He simply could not fight these infections because of his weakened immune status. "He had spent a month in agony and told his mother, I’m dying,’" the physician tells Medical Ethics Advisor.
The consultation and discussion: All of the talk and concern to this point had focused on management of the child’s medical problems. The supportive care team was consulted to assist the mother, who at this point had become despondent and talked of committing suicide if the boy died so she could protect him in the afterlife.
Before consulting the supportive care team, however, the intensive care and oncology staff at this large university-affiliated teaching hospital sought a psychiatric consult for the mother. The psychiatrist had no familiarity with bereavement issues (or the common talk of suicide when a parent faces a child’s death) and recommended that the mother be committed at the time of her child’s death if it were to occur.
The supportive care team noted upon review that the child had received no pain medication. The physician on the team estimated that the boy had less than two weeks to live. The intensive care team relented to concerns about ileus and began opiate treatment. Soon the boy’s condition improved. He started talking and asked for some of his favorite foods.
The oncologist assigned to the child’s care met with the supportive care team again and specifically outlined that the boy was "not in the terminal phase of illness" and that treatment limitations and the topic of death were not to be discussed with the patient or his mother.
The social worker and chaplain on the supportive care team met with the mother and validated her concerns about impending death. Although she had always favored clinical interventions for the many years of his illness, the mother began to wonder whether the child might want to go home.
A biopsy was performed. Although there was no evidence of leukemia, white cells had not increased. Another fungal infection began. The supportive care team recommended a family meeting, and a meeting was arranged to include two oncologists and the mother. At no time would the oncologists confirm or predict the child’s impending death. The mother asked for a DNR order, and they refused. That night the boy’s blood pressure dropped, and he was placed on pressors.
Another family meeting was held at noon the next day and included the supportive care physicians. The child’s blood pressure had dropped to 60/20. He could no longer go home, and his brother was brought in to say goodbye. The child died at 2:30 that afternoon.
The oncologist notified the psychiatrist who had consulted on the mother’s condition. The psychiatrist came into the room and attempted to take her to the hospital’s psychiatric unit while her deceased son was still there. Only when supportive care social workers and several members of the intensive care unit staff intervened did the psychiatrist relent and allow the mother to go home with her other son.
At no time was the hospital’s ethics committee involved in this case. The supportive care physician tells MEA that attempts to have an ethics consult failed.
Retrospective review: At a monthly morbidity and mortality conference after his death, the boy’s case was discussed. The review focused on medical care and whether other options should have been considered. The supportive care physician, who attended the meeting, says, "I asked these physicians if we had done a good job of taking care of this child who was afflicted with these biological problems. Their response was to become angry with me for questioning their medical judgment."
In the supportive care physician’s analysis, the psychosocial needs of both the child and the mother had been unrecognized and neglected. "Psychosocial care is part of our job too," she says.
(Editor’s note: This case illustrates the complex environment in the pediatric intensive care unit and the reluctance or refusal of many caregivers to accept a child’s death. What do you think? How might this case have been handled better? How can pediatric caregivers get peer support and recognize when they are imposing their own bias on a case? Should the ethics committee have taken the case? How might an ethics consult have helped? Write to us with your response: Medical Ethics Advisor, American Health Consultants, P.O. Box 740056, Atlanta, GA 30305. E-mail:joy_daughtery@ medec.com.
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