A Cross-Cultural Dialogue on Health Care Ethics

10. Pediatric Care: Judgments about Best Interests at the Onset of Life

Chapter 10 Pediatric Care: Judgments about Best Interests at the Onset of Life Michael Burgess, Patricia Rodney, Harold Coward, Pinit Ratanakul, and Khannika Suwonnakote This chapter turns to one of the most contentious issues in pediatric ethics: parental refusal of life-saving treatment for children. Although cultural considerations enter at all levels of pediatric care, it is in the refusal of lifesaving treatment that the conflict is most obvious. Refusal of life-saving blood transfusions by Jehovah's Witnesses on behalf of their children is an issue that is used in most bioethics courses and some comfort is often taken from the courts' support for saving the lives of children over protecting parents' right to express their religious beliefs in the care of their children. The usual argument is that the children are owed the opportunity to mature into autonomous individuals who can choose religious and other beliefs for themselves. But the refusal of a life-saving liver transplant for the Aboriginal or First Nations K'aila seems in some ways at odds with these sentiments and provides an opportunity to explore the role of spiritual and cultural 160 Pediatric Care 161 beliefs in health care decisions for children. K'aila was a boy born to Lesley Paulette, in a home birth assisted by K'aila's father, Fra^ois, and his brother, Thaidene.1 The first weeks of K'aila's life were clinically uneventful, except for an episode of new-born jaundice which was treated. Despite the physician's assurances, Lesley's feelings that "something was going to happen to this child" persisted. At three months, K'aila was examined by a pediatrician. Abnormal liver function led to further tests to rule out possible diagnoses. Biliary atresia or giant-cell hepatitis were the remaining possibilities, both requiring a liver transplant. The pediatrician explained to K'aila's parents that transplantation was standard therapy with a 80-85 percent survivalrate. He urged placement of K'aila on a transplant centre's active waiting list. K'aila's parents explained their misgivings about the proposed transplant. They believed that they would be committing a "grave error if we tried to recreate our son's body". This knowledge was, according to Lesley, "manifestations of knowledge that was available to my spirit, long before it was ever available to my mind". This type of knowledge provides the basis for much of Lesley's daily activities, such as the proper disposal of hair once it has been cut from her head. Over several months Lesley felt pressure to submit K'aila for transplantation . She and others gathered more information about the transplant, and discovered greater problems of rejection and vulnerability to infections than she had realized. She reassessed the five-year survival rate as closer to 60-65 percent. K'aila's parents informed the pediatrician that they would refuse a transplant. Since he was clearly having difficulty with their decision, they sought a second pediatrician's care for K'aila in a bordering province. The first pediatrician reported the situation to the Alberta Department of Social Services, who contacted the Department of Social Services in Saskatchewan. A court application was made requesting that K'aila be taken into custody so that the transplant could be performed without his parents' consent. Ultimately, the court denied the application for custody and upheld K'aila's parents' right to make the decision as acceptable. K'aila lived with his parents at home until his death at 11 months (Saskatchewan v. P. 1990). Bioethical and legal analysis The principles of bioethics can be used as a starting place to begin to specify the moral problems in the above story. Both the first pediatrician and K'aila's parents have the responsibility of seeking K'aila's best interests. The proposed liver transplant is the physician's best opportunity to avoid the harm that will befall K'aila if the liver dysfunction is allowed to take its 762 A Cross-Cultural Dialogue on Health Care Ethics natural course. The harms of transplant are within the profession's level of tolerance for the treatment of a life-threatening illness. K'aila's parents also have a primary responsibility to seek K'aila's benefit and avoid harm. They assess the harm of transplant to be unacceptable relative to the nature and probability of the benefit. Lesley Paulette describes this as based initially on the vision of...