A five-year-old boy who has acute lymphoblastic leukemia was originally treated with combination chemotherapy and achieved remission. Within several months his disease relapsed. His doctors have determined that allogenic bone marrow transplantation offers the greatest chance of a sustained remission. His one-year-old sister is the best match. Their mother has agreed to the sister being a donor, but their father has reservations about putting her through the procedure and suggests that his wife, although not quite as good a match, should be the donor.
Non-therapeutic pediatric interventions, such as harvesting a child’s bone marrow, are medical interventions that are not intended to benefit medically the child upon whom they are performed. Therefore, where such interventions are proposed or undertaken, they have some other purpose. In the case opening this chapter, the purpose of harvesting J’s bone marrow is to save the life of I.
The word “therapeutic” can be understood in broader and narrower ways. In the narrower sense, it excludes prophylactic interventions – namely those that are not intended to cure some condition the child currently has but to prevent an adverse medical condition later. Because prophylactic interventions are morally similar (even if not identical) to narrowly therapeutic ones, I shall group these together and thus use “therapeutic” in the broader sense that includes prophylactic measures. Non-therapeutic interventions are then those that neither cure nor prevent disease or impairment in those on whom they are performed.
The distinction between therapeutic and non-therapeutic interventions, although clear in theory, is far from clear in practice. This is because it is often a matter of dispute whether an intervention has therapeutic value. In other words, it is often unclear whether an intervention constitutes a net medical benefit to a child. For example, consider male circumcision that is not therapeutic in the narrow sense of curing an existing condition (such as true phimosis). There is considerable disagreement about whether such circumcision is an effective prophylactic measure. Some maintain that circumcision has considerable protective value against urinary tract infection, sexually transmitted diseases, and penile cancer. Others deny that it has any such value. Similar disagreements arise in connection with more radical interventions. For instance, some maintain that surgically assigning some intersex children to one sex or separating some conjoined twins is in those children’s interests. Others deny that these children are benefited by such procedures. I shall refer to all these types of intervention as interventions of disputed therapeutic value.
The word “pediatric,” like the word “therapeutic,” can be understood in narrower and broader ways. It can be used more restrictively to refer only to (prepubescent) children or more expansively to include adolescents. I shall use the term in a broader (but not the broadest) sense. This is because what is important, from an ethical perspective, is to refer to those young people who are insufficiently developed to be competent to make judgements for themselves about whether the intervention should be performed. These include children and younger adolescents, but probably not the oldest adolescents. Competence is a matter of degree and so there is no sharp divide between children and early adolescence. Moreover, there are important distinctions to be drawn within childhood. For example, very young children – infants – have no ability whatsoever to decide for themselves whereas older pre-teens have some capacity to do so. Decision making on their behalf needs to take these developmental stages into account.
Non-therapeutic pediatric interventions pose a moral problem because they fall beyond the bounds of the only widely uncontested condition for medical intervention in the lives of those who are unable to consent to medical interventions – namely the therapeutic condition. Generally, in the case of competent people, their consent is a necessary moral condition for medical intervention. Children are not competent to decide which medical interventions may be performed on them and are, consequently, unable to provide valid consent. The absence of this consent, however, does not render all pediatric interventions problematic. It is widely agreed that some form of paternalism towards those who are not competent to make decisions for themselves is at least permissible and usually required. Following this principle of paternalism, pediatric interventions may or must be performed if they are to the child’s benefit. Therapeutic interventions clearly fall into this category. However, the paternalistic justification for intervention does not seem to apply to those pediatric interventions that are not (clearly) therapeutic. May such interventions ever be undertaken and, if so, when?
Consider first interventions that are of disputed therapeutic value. What is one to do in such circumstances of uncertainty? To intervene may impose a needless risk or harm if there happens to be no net benefit. However, acting on the principle of “primum non nocere” (“first do no harm”) would oversimplify matters, because to fail to intervene may be to withhold an important benefit if the intervention happens to be positively efficacious.
A vital question to ask in such circumstances is whether the uncertainty is a result of one’s own ignorance about the best available evidence or whether the best available evidence requires uncertainty. Doctors are often ignorant (or insufficiently critical) of the evidence for or against the purported therapeutic effect of some intervention. They operate on the basis of impression, anecdotal evidence, or received wisdom rather than carefully tracking down the primary data or even reliable reviews. However, sometimes a full inquiry into these matters reveals that the evidence is inconclusive and that agnosticism is the appropriate response. In such cases, there is no clear side of caution on which to err, and reasonable people might disagree about whether to undertake the intervention even if it is believed that therapeutic interventions are the only permissible ones in the pediatric context.
Disagreement about the therapeutic value of an intervention is not always attributable to uncertainty about the medical evidence. Sometimes, the disagreement is at least partly a disagreement about values. For example, some might judge a very small chance of death following circumcision in infancy to be less bad than an equally small chance of death from penile cancer at an older age, while others may hold the opposite view. Some might believe that a life spent joined to one’s twin is worse than death, while others might deny that it is bad at all. The presence of such disagreements does not mean that all competing views are always equally good. Sometimes, there may be better arguments for one evaluation than for the other. For this reason, the arguments for the competing views should be explored. However, such exploration may reveal that the arguments for one view are not clearly stronger than the arguments for a competing view. In such cases, reasonable people can disagree: some taking a given intervention to be therapeutic while others deny that it is so.
The fitting response to reasonable disagreement about the therapeutic value of an intervention is to judge both the intervention and its avoidance permissible. If this is so, then even those who believe that the only pediatric interventions that are permissible are therapeutic ones must acknowledge that interventions they personally do not judge to be therapeutic should be permissible if others can reasonably regard them to be so.
More controversial than interventions of disputed therapeutic value are those that are performed in order to benefit somebody other than the child on whom they are performed. Consider, for example, research on children. Although children upon whom research is performed may sometimes stand to benefit from the intervention being tested, they may also be harmed by it. The main beneficiaries of the research are future children, who will either benefit from a proven effective intervention or be spared an intervention that at best is useless and at worst harmful. Other interventions, such as bone marrow transplantation from a child to a close family member, provide more certain benefits to others. Such interventions expose the (donor) child to some risk and harm without aiming to benefit that child medically.
Some people maintain that no such non-therapeutic pediatric intervention is permissible. In making this claim, they might appeal to the difference between a competent person agreeing to incur a risk or be harmed in order to benefit another and a second party authorizing such risk or harm for a being, such as a child, who has never been competent. However, we can acknowledge this difference without thinking that the latter authorizations are never permissible. One might think that authorizations for children may be made only below a lower threshold of risk or harm. It would surely be implausible to judge as impermissible parents’ authorizing one of their children to be a blood donor for another of their children. The costs to the child of blood donation are clearly very minor and the benefits to the recipient clearly sufficiently great to justify such an intervention. Thus we see that an intervention cannot be ruled out simply because it is not therapeutic (for that child). We have to consider how big a risk or cost the intervention involves and how much good it can be expected to do others.
A second consideration that may be adduced in favor of at least some non-therapeutic interventions is that, although they may not benefit the child medically, some of them may benefit the child in other ways. If a child’s parent, for example, will likely die without a bone marrow transplant for which the child is the most suitable donor, it may be quite plausible to say that the child would be benefited, all things considered, by donating the bone marrow. The child may be harmed more by the loss of the parent than, for example, by the pain attendant upon harvesting of bone marrow.
Although doctors often recommend pediatric interventions, they are rarely ethically or legally entitled to make the decision that the intervention will be performed on a given child. Authority to make that decision is usually borne by the parents, who are the presumptive surrogate decision makers. However, the presumption that the parents have this authority may sometimes be defeated. In such cases, doctors and others, including sometimes the courts, may or must assume decision-making responsibility. Doctors usually have more power to refuse an intervention than they have power to authorize an intervention. If a parent authorizes an intervention that the doctor believes is clearly unreasonable, the doctor may usually refuse to perform it.
However, whether doctors are working in concert with or in opposition to parents, the underlying practical question that doctors, parents, and others should be asking is how one decides whether an intervention of disputed therapeutic value or of medical benefit only to others should be performed? One helpful decision procedure would be to ask the following series of questions. (i) Is the benefit to self or others greater than the risk or harm? (ii) Is the harm or risk excessive? (iii) Does the child support the intervention?
All the relevant factors must be considered in assessing whether benefit to self or others is greater than the risk or harm. These include not only the medical benefits and harms, but also all other benefits and harms. The evidence for these benefits and harms must be carefully considered. If having considered all this, the question is answered in the negative then the intervention may not be performed. If the answer is positive or it is unclear whether it is negative or positive, then one should proceed to the second question.
Even if the harms or risks of harm are outweighed by the benefits, they may nonetheless be excessive. That is to say, they may be greater than can reasonably be authorized under the circumstances by a second party on behalf on an incompetent being. What constitutes excessive harm or risk varies depending on whether the expected beneficiary is the child on whom the intervention is performed or others. It is reasonable to run greater risks and inflict greater harms if the beneficiary is the same child than if it is somebody else. What constitutes excessive harm or risk also varies depending on whether the answer to the first question is positive or is uncertain. The less certain the intended benefits, the less the risk or harm that can be sanctioned.
Of course, what constitutes “excessive” in either case is open to some interpretation, but only within a certain range. Some risks or harms will be clearly excessive and others will clearly not be so. A positive answer to the second question renders the intervention impermissible. If the answer is negative and the child is an infant, then the intervention may be performed. If the answer is negative and the child is partially competent, one should proceed to the third question.
There are two relevant variables to consider here. The first is the extent of the child’s competence. The more competent the child, the more weight should be put on his or her judgement about whether the intervention should be performed. The second variable is the reasonableness of the child’s preference. The smaller the margin whereby the benefits outweigh the harms and the closer the harms are to the excessive threshold the more weight should be attributed to a child’s preference not to have the intervention performed. The more the benefits outweigh the harms, and the further the harms are from the excessive threshold, the more weight should be given to a child’s preference to have the intervention performed. The two variables interact in the following way. The more competent the child the less reasonable his or her judgement need be to carry the same weight.
Ordinarily, harvesting bone marrow from a young child in order to save the life of his or her sibling is a justifiable intervention. The risks of serious harm to the donor are negligible. To be sure, the process of harvesting the marrow is quite painful, but this cost is outweighed by the considerable benefit to the child’s sibling. The donor also benefits indirectly by not losing a sibling. In addition to the short-term loss of a sibling, there may be a considerable psychological burden later in life, if the would-have-been donor learns, once she grows up, that her deceased sibling could well have survived had she been used as a donor. The sister is too young to understand the situation and thus her (absent) views cannot be taken into account.
There are two complicating factors in our case. Firstly, we need to know how much more suitable a donor the child is than her mother. If the difference is only minor, then the slightly decreased chances of success may be warranted by the preferability of using a consenting adult rather than a non-consenting child as the donor. Second, although the mother is willing to authorize the harvesting of her daughter’s bone marrow, the father has reservations. His concerns need to be addressed. If he cannot make a good case for refusing to allow his daughter to be a donor, then he should be persuaded of the justification for permitting the harvesting of her bone marrow. The life of his son is not all that lies in the balance. Unless the mother and father can reach agreement, a deep rift between them is likely to develop, particularly if the daughter is not used as a donor and the son subsequently dies.