What Should Guide Us in Making Decisions for Children: Best Interest, Harm, God’s Will, Parental Discretion or Utility?
Author: John D. Lantos, MD | Director of Pediatric Bioethics | Professor of Pediatrics, UMKC School of Medicine
Two claims seem uncontroversial: 1) children have moral claims that should be protected and recognized, and 2) it is sometimes difficult to determine what is best for children. We clearly have not found an all-encompassing principle or theory that will resolve all cases. Do we need one?
Theories are tools. Different situations may require different tools. No one tool can be useful for every task.
Each theory or principle creates its own gray zones, areas where there is disagreement about what actions the theory or principle demands. The existence of these gray zones is the philosophical equivalent of Godel’s theorem. Any logical system contains statements that, by the rules of that logical system, cannot be judged as either true or false.1 Philosophical frameworks for deciding when to override parents are similarly, inevitably, inconclusive about the toughest cases. Tautologically speaking, that is what makes those cases tough.
In his book Children, Ethics, & Modern Medicine, theologian Richard Miller tells of one such tough case that illustrates the problem.2 Billy, a boy with Hurler syndrome, underwent a bone marrow transplant at age 13 months. The transplant failed to engraft. His disease progressed. When he was 4, his parents sought another transplant. The chance of a second transplant being beneficial was very low. Billy’s second transplant engrafted, but he developed graft-versus-host disease, sepsis, and multisystem organ failure. He remained on mechanical ventilation, vasopressors and dialysis for weeks. The doctors recommended withdrawal of life-support. The parents did not agree.
Billy’s parents were, by their own description, deeply religious Christians. His mother attributed Billy’s continued survival to God. She said, “He’s guiding us according to his will, which may not be what we want. It’s his will. We may not like it. That is ultimately what is good for Billy.”
Smith argues that their theology was misguided because their choices for continued treatment were not in Billy’s best interest.
Margaret Mohrmann, a pediatrician and theologian, isn’t so sure.3 The fundamental disagreement, she concludes, is about “our divergent understandings of who God is and how God acts with us, specifically in relation to our suffering.” For a non-religious person, such questions are irrelevant. For a believer, they are paramount. Each system of thought is internally coherent. But they can never be reconciled.
The same sorts of fundamental disagreements might arise between a Kantian and a utilitarian, or among people with different ideas about the proper weighting of the views of parents, doctors, payors or judges.
Given such fundamental disagreements, it is amazing that most disagreements about what should or should not be done for critically ill children are resolved through continued discussion. A number of detailed case reports describe seemingly intractable disagreements that, with ongoing discussion, were eventually resolved.4,5,6 Feltman writes of a premature baby with a giant omphalocele. Doctors told the family that this condition was incompatible with life. The mother and father both protested and threatened legal action.7 After further discussion, the parents changed their mind and told the doctors, “We don’t want baby to suffer if she can’t survive.” Paris wrote of a 2-year-old girl who had suffered perinatal asphyxia at birth and, after a gastrostomy and tracheostomy, continued to have intermittent episodes of aspiration, seizures, pneumonia and sepsis.8 The doctors wanted to stop life-support. The mother adamantly did not. Doctors at another hospital were willing to treat the child. She was transferred, treated and survived for years.
In all these cases, principles are inadequate. Whether we base our decisions on the best interest standard, the harm principle, God’s will, or net utility, no theory is sufficient or conclusive. Parents and doctors who struggle to decide about treatment for any particular baby should use every theory and principle that seems to shed light on the dilemma. Ultimately, though, they will need to make a decision that reflects both theory and moral intuition. The worst approach is to seek theoretical purity at the risk of sacrificing pragmatic efficacy.
What is Godel’s Theorem. Henrikson M. Scientific Amer. https://www.scientificamerican.com/article/what-is-godels-theorem/. Accessed June 10, 2018.
Children, Ethics, & Modern Medicine. Miller RB. Indiana University Press, Bloomington IN. 2003.
Whose Interests Are They Anyway? Mohrmann MM. J Relig Ethics 2006;34:141-50.
Are We Allowed to Discontinue Medical Treatment in This Child? Leeuwenburgh-Pronk WG, Miller-Smith L, Forman V, et al. Pediatrics. 2015;135:545-9.
Ethics Rounds. Symbolic Resuscitation, Medical Futility, and Parental Rights. Frader J, Kodish E, Lantos JD. Pediatrics. 2010;126(4):769-72.
Institutional Policies on Determination of Medically Inappropriate Interventions: Use in Five Pediatric Patients. Okhuysen-Cawley R, McPherson ML, Jefferson LS. Pediatr Crit Care Med. 2007;8(3):225-30.
Is Treatment Futile for an Extremely Premature Infant with Giant Omphalocele? Feltman D, Stokes T, Kett J, Lantos JD. Pediatrics. 2014;133(1):123-8.
Physician Refusal of Requested Treatment. The Case of Baby L. Paris JJ, Crone RK, Reardon F. N Engl J Med, 1990; 322:1012-15.