This post also appears in the November 2017 issue of the American Journal of Bioethics.
by John Lantos, Ph.D.
In this issue of AJOB, Navin and Wasserman (2017) argue that parents should have more discretion in clinical decision making than they currently do. They criticize the Committee on Bioethics of the American Academy of Pediatrics (AAP) for curtailing parental discretion.
Many commentators thought, instead, that the AAP got it just right. Bester and Kodish (2017) argue that decisions for children should not be guided by an assumption that parents are always right but by “the important fiduciary obligation that doctors have to focus primarily on what is best for their patient.” They worry that the approach of Navin and Wasserman opens the door to exploitation, abuse, or neglect. Children, they assert, are not chattel. They do not belong to their parents.
But if children do not belong to their parents, to whom do they belong? Certainly not to their doctors. Nor are they autonomous and capable of taking care of themselves. Perhaps they belong to the state, although that concept has a frighteningly fascist tinge. Or maybe the problem is a misunderstanding of the concept of belonging. Can they belong partially to everyone and absolutely to no one? After all, everyone involved—parents, doctors, the state—has the same fiduciary responsibility to do what is best for children. We all also have potentially conflicting interests of our own, so none of us can be the selfless advocates for children that we would hope to be.
When doctors and parents disagree, the question is always about whether one is more focused than the other on the child’s interests. Usually, doctors and parents are able to come to a compromise, each advocating for their own views and both willing to compromise. When doctors and parents cannot agree to a mutually acceptable compromise, then the state will be called in to adjudicate the disagreement. The state, with the help of articulate parents, physicians, and policymakers, establishes the parameters by which doctors may challenge parental choices or by which parental views may prevail. But the state, in a democracy, is (or ought to be) a reflection of the values of the people.
So children, it seems, belong to us all, at least in the sense that, because they cannot take care of themselves, we must decide, collectively, what is best for them. We must decide what we owe them, and how we will allocate the responsibility for their upbringing, their basic needs, their education, and their medical care.
Our processes for such collective decision making are astoundingly vague. They begin with an attempt to establish some principles to guide doctors and parents. As the articles in this issue suggest, those principles can be either aspirational or modest.
The best interest principle is aspirational. It suggests the impossible ideal that in every medical decision, we must do what is best for the individual child with no compromises or considerations of competing interests. This idealistic goal has rightly been criticized for viewing each child as isolated from both family and society. If we took the best interest standard seriously, it would make medical decisions bizarrely antisocial. No child is such an island.
The harm principle, by contrast, is modest. It suggests that we, collectively, can neither know what is best for any individual child or family nor assert a right to demand that parents do what is best for a child. Instead, we can only insist that parents meet the minimalist standard of not doing things to their children that are egregiously harmful. As long as they remain above that threshold, their privacy and their choices should at least be tolerated and perhaps even celebrated. That principle seems to leave children at the mercy of mediocre or even moderately malevolent parents.
The challenge posed by these two principles is that neither can be clearly operationalized in a general way. Instead, the implications of each can only be made real by trying to apply them to a particular clinical situation. It is not surprising, then, that in arguing for one or the other, authors use different and carefully chosen specific clinical situations to show why one is more appropriate than the other. But the clinical examples do not overcome the complexities. Instead, they illustrate those complexities. Surely, as Navin and Wasserman assert, parents ought to be able to ask doctors and nurses to defer the timing of a newborn’s immunization because the baby and mother are resting. In that situation, postponing one important good for the child promotes another important good. Just as surely, as Paul and colleagues (2017) suggest, most parents are not in a good position to question doctors’ judgments about the proper dose of a vasopressor for a critically ill child in the intensive care unit. Deferring to parents in that situation will likely cause harm to the child. But what about the pharmacological management of children with attention-deficit disorder, decisions about redirection of care for a disabled child in considerable pain with no chance of improvement, choices for children with differences in sexual development or identity, or the provision of routine childhood immunizations? Each might tug us in a slightly different direction, both because we tack back and forth between the aspirational goals of the best interest standard and the minimalist requirements of the harm principle and because in each situation it is difficult to agree on the nature of the harms or the interests that are being promoted. Furthermore, these examples only scratch the surface of the complete range of complexities. They don’t, for example, imagine intrafamilial or intraprofessional disagreements about treatment choices, families in which parents are abusive or neglectful, or treatments that are promising but highly innovative.
As with so many issues in bioethics, the principles get us only so far. They are more useful for defining the zones of conflict than for resolving conflicts. In all the tough cases, we need to ask ourselves how, in the zone between these principles and outlined by them, we can together meet our collective responsibilities to care of our children. This generally requires a division of responsibility. To truly care for children, parents must always have the primary and day-to-day responsibility to help children thrive and flourish. Parents often ask doctors to help within the narrow domain of decisions that are directly related to health. Educators are also crucial, as are law enforcement officials, supermarkets, urban planners, legislators, and spiritual leaders.
Together, we need to decide not only what we owe our children but also which children to consider as “ours.” For parents, is it only their own children or is it all children in their community? For doctors, is it only the children under our care, or are we stewards of all child health resources and obligated to be at least somewhat utilitarian? For our country, is it all the children in our midst or only those with proper documents? The focus on the complexities of particular clinical decisions is most useful when it illustrates the implications of our broader collective responsibilities.
Over the last year, we have seen societal debates about health insurance. Should it be required to cover maternity care or the care of children with preexisting conditions? Are safety-net programs like Medicaid or the Children’s Health Insurance Program adequately funded? Should expensive treatments be made available to all children who might benefit? Should babies born with particular congenital syndromes be included in or excluded from the benefits that are available to healthier children? We have debated whether school funding should be allocated in a way that promotes equality or that promotes a wider range of parental choices. All of these debates suggest the many ways in which the medical care of children is a fundamentally collective responsibility.
Each particular case—debates about immunizations, or palliative care, or the medical approach to gender—gets traction to the extent that disagreements represent different ideas of the good. But it is destructively reductionist to imagine that the issue is one that pits parents versus doctors. Instead, in these troubled times, doctors and parents need to work together more closely than ever before. Both groups must insist that we owe our children more than simply protection from harm. We want children to flourish, to soar. When any child is denied such opportunities, it diminishes us all.