By Erin Talati
In the intensive care unit, almost every decision can be made into life or death. For some children whose parents are Jehovah’s Witnesses the need for a blood transfusion becomes quite literally a life or death decision. As clinicians, we struggle with maintaining a relationship with the family, while advocating for what we believe is in the best interests of a sick child. Asking a family taxed by the knowledge that their child is critically ill to step back and to choose to sin to save the life of their child or instead to choose death seems impossible; and, usually, we don’t expect families to make this decision. In many situations where a blood transfusion is required to protect a child from what is thought to be imminent death, a variety of approaches have allowed hospitals and courts to remove decision making power from the family to permit blood transfusion of a child against the family’s religious beliefs.
Decisions over transfusion of Jehovah’s Witness children are not new. A long line of cases dating to the late 1960s examines the balance between parental domain over decisions for their children and the interest of the state to protect the best interests of children. Since the 1960s, the debate has taken many forms. In life threatening situations, precedent allows doctors and hospitals to take some form of protective custody over a child in order to do what is thought to be best for the child. Early iterations of the debate focused on state intervention into the private sphere of the family only when the medical community agreed on the proposed intervention, the intervention would be the right decision for the child, and the child would face imminent death without the intervention. The justification for this approach is that while parents are generally best suited to determine what is in the best interests of their children, when the parents beliefs endanger a child’s future ability to decide for himself, the state can step in to protect the future interests of the child.
The decision to allow transfusion of children of Jehovah’s Witnesses over the wishes of their parents, however, is not universal. In one Illinois case, for example, the courts decided that a teenager who refused a blood transfusion with the support of her parents could refuse this treatment, even if might save her life. In re E.G., 549 N.E.2d 322 (Ill. 1989). The refusal in this case was permitted because the minor herself refused the therapy and the court decided that this decision was in line with the minor’s choices for herself. Additionally, in some Canadian provinces, consent law allows a minor to make decisions above a chronological age of 14 or 16 or upon demonstration of competence to decide, irrespective of chronologic age.
When the indication for transfusion is not imminent or there is no immediate risk of harm or death, however, it is less clear how courts might approach transfusion of a child over the wishes of their parent. For example, children with sickle cell disease are frequently on chronic transfusion programs to prevent significant complications from their disease. The disease causes blood cells to form abnormally, allowing them to get stuck in blood vessels around the body resulting in a number of possible organ injuries including significant lung injury and stroke. Blood transfusions fill the body with normally shaped blood cells, making it less likely that the individuals own blood cells will get stuck and lead to complications.
There is no doubt that the complications one could suffer from sickle cell disease are severe and potentially even life threatening. Chronic transfusion has, in fact, been shown to reduce the number of sickle cell complications. It is recommended for children at particularly high risk for these complications, often because the child has already suffered a serious complication from their disease. Still, it is not clear whether potential reduction of risk for a severe complication justifies repeatedly overriding parental rights in the same way that applies when a child is imminently at risk of death unless they receive a blood transfusion. In In re Cabrera (552 A.2d 1114 (Pa. Sup. Ct. 1989)), one court has decided that the state can intervene to protect a child in this exact situation. Yet, the issue of intervening against the wishes of parents in a somewhat prophylactic measure is overall underexamined. What justifies intervention here but not, for example, to vaccinate a child against a parent’s wishes? Where is the boundary?