Pediatric Futility?

            MW was a 2.9-kilogram, full term infant born to a 28-year-old mother following an uncomplicated prenatal course.  At birth he was apneic and bradycardic [he stopped breathing and his heart beat was slow], and he was resuscitated. His initial chest X-ray revealed a left diaphragmatic hernia. At 12 hours of age, following continued respiratory deterioration, he was placed on extra-corporeal membrane oxygenation [ECMO-a form of heart -lung bypass]. He remained on ECMO for six days without complication, at which time he was successfully separated from the ECMO circuit. The following day, his diaphragmatic hernia was repaired without incident. For the next several days, he showed steady improvement and was weaned to minimal ventilator settings. At 12 days of age, however, he developed an unexplained episode of acidosis and hypoxia [abnormally high acid content of the body fluids and a deficiency of oxygen reaching the tissues]. From that time forward, his course waxed and waned, but with a clear trend of overall deterioration.

            By the time he was 40 days of age, he required mechanical ventilation with 100% oxygen and peak airway pressures of 40 centimeters of water. His pH was 7.11. By 50 days of age he was anuric [he did not produce urine]. Two attempts at dialysis were unsuccessful because of extensive thrombosis throughout his inferior and superior vena cava [blood clots in the two large veins that return blood to the heart]. He failed to tolerate enteral nutrition [feeding via the intestines], and central venous alimentation [intravenous feeding] was impossible because of the thromboses. He was severely edematous [his body retained excessive fluids], with his eyelids swollen shut and inverted. His fluid output was serosanguinous seepage [a discharge composed of serum and blood] from multiple areas of skin breakdown. He received escalating amounts of fentanyl for sedation and analgesia, ultimately reaching a dose of 125 micrograms per hour. He also required pharmacologic paralysis with pancuronium, which allowed him to tolerate the high ventilator settings. On this dose of fentanyl he seemed to have little hemodynamic response to painful stimulation, but further assessment of his degree of comfort was impossible given his requirement for neuromuscular blockage.

            His parents had two other healthy children, aged three and eight. Initially both the healthcare team and the parents shared an optimistic view about MW’s prognosis, and for the first several weeks his parents visited at least three times a day. As MW’s condition worsened, however, they began to limit their visits to a couple of hours very late in the evening. They indicated that they clearly understood the healthcare team’s unanimous view that MW was nearly certain to die in the very near future. They were also clear, however, that they did not want to be responsible for “pulling the plug,” and that they did not want the clinicians to take the step either. They believed that “only God should make that decision.” Meanwhile, they insisted that everything possible be done to sustain the child’s life. Early in the course they had been reassured that their child would always be kept comfortable with adequate sedation and analgesia. They continued to trust that this was the case and did not believe that their child was suffering from all of the invasive therapy.

            About two months into the hospitalization, the care team felt that they had reached an impasse with the family regarding the continued use of life-sustaining therapy.  They requested and obtained a consultation from the hospital’s ethics advisory committee. After meeting with both the clinical team and the child’s family, the committee concluded, “In such cases of disagreement between the health care team and the family, we advise deference to parental wishes unless there is consensus among the caregivers that treatment is both futile and causing a burden of pain and suffering.”

            Because there was virtually no limit to the amount of opioid that could be provided, the clinicians interpreted this advice as a recommendation to continue treatment. A second opinion was obtained from a respected pediatric intensivist at another hospital, but this did nothing to sway the family’s resolve, although they did ultimately agree to a do-not-resuscitate order. Over the next several weeks the infant showed occasional signs of improvement, with some success at enteral nutrition and intermittent urine output. However, by the time he was three months of age, MW was again anuric and without any intravenous access. His skin breakdown had become so severe that he had to be placed in an isolation room to control the odor. At 90 days of age, he developed a refractory bradycardia and died. Ethically, should the healthcare professionals have continued to treat MW?