This post also appears in the August 2018 issue of the American Journal of Bioethics.
by John D. Lantos, Ph.D
The impassioned and well-reasoned essays in this edition of the journal all agree with two claims: (1) children have moral claims that should be protected and recognized, and (2) we need ongoing discussions on how to determine and weigh the interests of children when we make decisions for them. They disagree about how we should determine and weigh those interests. The disagreements suggest that we clearly have not found an all-encompassing principle or theory that will resolve all cases. That is less of a problem than these essays suggest.
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 does not mean that each theory is inadequate. Instead, it is, I believe, the philosophical equivalent of the phenomenon that Godel proved true about mathematical systems. Any logical system contains statements that, by the rules of that logical system, cannot be judged as either true or false.
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. 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 four, 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. She recognizes that many pediatricians and bioethicists would conclude that our beneficence-based obligations would demand that we stop Billy’s life-support. But she also recognizes that such arguments are irrelevant to Billy’s parents. 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.
Mohrmann suggests that we are making a category error when we classify the dilemma as an “ethical” problem. She writes, “Billy’s welfare is beyond our grasp, unassessable, unless we choose to adopt his parents’ religious language and speak of keeping him alive because it is good for him that he serve God in that way or, with a different but no less religiously warranted perspective, speak of letting him go because it will be good for him to move on to his eternal life with God”.
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. After all, disagreements occur daily in pediatric intensive care units. Routinely, doctors “discuss the nature and likely outcome of a given illness, explore the ramifications of forthcoming decisions, determine patient values, confirm that patients or families understand the information provided them, discuss preferred roles in decision-making, and achieve consensus about treatment courses that are most consistent with patient values,” recommend “a collaborative approach with families, one that avoids staking out adversarial positions in cases where there is disagreement about the best course of action in a child’s care,”. The process of discussion about treatment choices is frequently emotionally complex. Miscommunication, frustration, anger, and stress are common.
A number of detailed case reports describe seemingly intractable disagreements that, with ongoing discussion, were eventually resolved describe five cases in which parents demanded treatment that doctors thought inappropriate. In three of the cases, the parents eventually agreed to withhold or withdraw life-support. In a fourth, the parents never explicitly agreed to withdrawal of mechanical ventilation but went along with it. A fifth child went home with home health care and survived for years.
Feltman and colleagues write 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. 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 and colleagues wrote of a two-year-old girl who had suffered perinatal asphyxia at birth and, after a gastrostomy and trachestomy, continue to have intermittent episodes of aspiration, seizures, pneumonia and sepsis. 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, we don’t disagree about the principles. We disagree about their application. This is true for the best interest standard, the harm principle, for drawing the boundaries of the zone of parental discretion, figuring out the demands of God’s will, assessing net utility, or deciding whether a particular person is “reasonable.” All are important. None are dispositive. Parents and doctors who struggle to decide about treatment for any particular baby should use every theory and principle they can get their hands on. The worst approach is to seek theoretical purity at the risk of sacrificing pragmatic efficacy.