Too Close to the Knives: Children’s Rights, Parental Authority, and Best Interests in the Context of Elective Pediatric Surgeries
This paper advances a novel conception of the child’s best interest in regard to pediatric surgeries that do not promote the preventive or therapeutic health needs of children, namely elective pediatric surgeries (EPS). First, children’s capacity for decision making is examined, and the best decision-making model for EPS is identified as the Best Interest Standard. What follows is a discussion of the interests of children in the context of EPS, the correlation of fundamental interests to rights, and guidelines for weighing children’s competing interests. Next, the rights and duties of parents as proxy decision makers are considered. Finally, a reinterpretation of the Best Interest Standard is proposed, identifying as paramount a child’s ability to make elective medical decisions for herself when she reaches maturity.
1. Walter and Skyler are overjoyed to welcome their second child, Holly. While she is the picture of infant health, Holly is diagnosed with fibular hemimelia, the congenital absence of the long bones in the legs. As a result, her legs will never grow in a way that will afford her typical mobility. While still in the hospital post-delivery, the family’s pediatrician advises Walter and Skyler to consider which surgical option to pursue: an amputation to allow Holly to wear prostheses, or limb lengthening procedures to lengthen the bones in Holly’s legs.
2. Jesse is a physically healthy ten-year-old boy who was born with a cleft lip and palate. These clefts made feeding difficult as an infant, and his parents authorized surgeries to repair the abnormalities. The initial clefts and subsequent surgeries left Jesse with a misshapen nose and a large scar. Jesse struggles to fit in among his peers, who frequently tease him about his appearance. As a result, he is socially withdrawn, acts out, and [End Page 281] performs poorly in school. Jesse has been under the care of a psychologist, Dr. Goodman, for two years. Despite treatment from Dr. Goodman, Jesse’s psychological health continues to deteriorate. Jesse admits to Dr. Goodman that he engages in self-harm as a way of coping with the stress caused by his appearance. Jesse’s parents are considering cosmetic surgery for Jesse that would reform his nose and minimize his surgical scar.
3. Flynn is sixteen months old and was born deaf. His parents are hearing and would like their son to share this sense to maximize his educational, social, and professional opportunities. They have been in consultation with an audiologist about the appropriateness of surgery for a cochlear implant. The audiologist advises the parents to schedule the surgery before Flynn is two years old to maximize development of his language faculties.
This paper explores the ethics of parental consent for elective surgeries performed on minor children. I will argue that clinical practices that permit parents to consent to elective surgeries on behalf of their minor children frequently do so at the expense of the children’s rights to make self-determined choices later on as adults.1 I will begin by delineating the medical context and scope of this analysis, and then suggest a justification for adopting the Best Interest Standard as the most appropriate guidance for parental decision making. I will then consider the ethics associated with the authorization of elective surgeries on children. First, I will identify four categories of interests held by children, each of which features a threshold representing a minimal acceptable level of care. I will argue that these thresholds correlate to rights held by children to their fundamental interests. Second, I will explore appeals to children’s interests when parents pursue elective pediatric surgeries on behalf of their children, proposing guidelines for how competing interests should be weighed in the decision-making process. Third, I will discuss the rights and duties of parents, adopting a stewardship model of parental authority as the most successful. Finally, I will propose a new interpretation of the child’s best interest that emphasizes a child’s interest in making self-determined choices in the future alongside her immediate welfare. [End Page 282]
CONTEXT AND SCOPE
The scope of this paper will be limited to elective surgeries performed on children (elective pediatric surgeries, or EPS). While I do not propose an exact age group, I will broadly consider pre-adolescent children for this analysis. I presume that these children will become legally and cognitively competent to act as their own healthcare decision makers in the future. So, this analysis may not be applicable to terminally ill infants, children with severe developmental disabilities, or other children whom we cannot reasonably believe will grow to cognitive and legal maturity.
In this context, elective refers to surgical procedures that (1) are not empirically likely to make significant contributions to the prevention of illness or disease (either mental or physical), and (2) are not medically indicated to treat an existing illness or injury. Elective surgeries are optional, whereas preventive and therapeutic surgeries are likely to make contributions to the patient’s health by preventing illness or treating an existing illness or injury. The cases at the opening of this paper illustrate some of the kinds of surgeries under discussion. Many of these surgeries are intended to address disabilities, developmental abnormalities, or other causes of atypical appearance or ability. Such interventions include limb lengthening (most often performed on children with forms of dwarfism), sex assignment of infants with ambiguous genitalia, and operations to address a range of craniofacial abnormalities. EPS also includes surgeries to improve unwanted aspects of a child’s appearance, such as the removal of birthmarks or ear pinning. This discussion is also directed toward medically and socially controversial procedures such as the routine or religious circumcision of infant males in developed nations, the medical utility of which is disputable (Malone and Steinbrecher 2007).2
Many forms of EPS are justified as being socially normalizing: their primary purpose is not to respond to present health needs, but to aid in psychosocial development. The normalization of children through surgery seems to call upon us to consider the values that such surgeries reflect (Little 1996; Lindemann 2006). However, focusing on the values themselves is a misdirected cause. When discussing EPS, one should not consider the surgeries themselves to be ethically suspect: it would be permissible for any competent adult to pursue these procedures of her own free will. Once a child has reached the age of majority, I presume that she will be within her authority to pursue these surgeries on her own behalf. Thus, the ethical questions explored here do not consider the appropriateness of utilizing medicine to shape appearance or ability. Instead, I am concerned [End Page 283] with utilizing medicine to permanently alter the appearance or ability of a patient who is unable to fully participate in the process of choosing surgery, but whom we have reason to believe will become competent to participate in such a process at a later date. What has the potential to be ethically problematic is that the values reflected by EPS may not end up belonging to the child who will be directly impacted by the surgery. From this perspective, it is fundamentally important to ensure that the person who will bear the consequences of a surgery is having her values considered when surgery is selected.
PROXY DECISION MAKING
As children are presumptively regarded as incompetent to make their own medical decisions, parents have the authority to provide consent for medical interventions on behalf of their children until those children reach legal majority. While several models have been developed to guide parents in their role as proxy decision makers, the Best Interest Standard (BIS) is what most agree is the appropriate clinical guidance. The BIS acknowledges both children’s incomplete capacity for decision making and the importance of selecting interventions that will best promote the totality of children’s interests. While there are several iterations of the standard, each call upon a proxy decision maker to authorize medical interventions that will maximize the patient’s interests, all things considered, in a forward-thinking way. Making this determination requires a consequentialist calculation of the potential benefits and risks associated with a given medical intervention, carefully weighing conflicting interests in a way that reflects their relative importance.
The BIS has been codified into law,3 is common in clinical environments, and is prevalent in bioethics literature and clinical texts (Lo 2009, 267; Jonsen et al. 2006, 97). Despite this prevalence, there is an alarming lack of consensus about how a parent should define her child’s best interest. Membership organizations for physicians tend to defer to the parents in determining what constitutes the best interest of the child.4 This underscores the fundamental tie between the BIS and the nature of the parent–child relationship: the assumption is that a parent will act in their child’s best interest, or at least in a “close enough” approximation of that interest, due to bonds of love and intimacy (Salter 2012). However, parents are imperfect, and many are motivated by factors other than pure affection for their children. This flaw is not inherent to the BIS itself, but rather in its application. [End Page 284]
Despite its prevalence, the BIS has faced numerous critiques. It has been accused of being vague and placing excessive demands on parents. These concerns can be overcome with careful consideration. First, allow me to address the criticism that the BIS is vague (Veatch 1995). This claim seems credible in the sense that appealing to a child’s best interest is open to a wide variety of interpretations. However, the best interest is distinct from the best interest standard. There are a variety of proposed iterations of the BIS that attempt explicitly to delineate the appropriate means of maximizing a child’s interests (Buchanan and Brock 1989; Kopelman 2005; Drane and Coulehan 1995; Goldstein 1996). The application of each best interest standard requires context-specific judgments, and so these standards cannot provide an exact calculus for any given situation. However, each attempts to provide (some more successfully than others) substantial enough parameters to guide decision making in a clinical setting. The issue then is not whether the best interest is vague, but identifying the optimal version of the standard to guide decision making.
Perhaps the strongest challenge to the BIS is that the standard makes excessive demands on parents. While it is undeniable that “best” is exaggerated language, it is language that reflects, even if it idealizes, the goals of most parents and providers: to steadfastly promote an ambitious vision of children’s welfare. One concern about best interest language is that it encourages parents to neglect their own legitimate interests in service of their child’s interests.5 However, the nature of the parent–child relationship suggests that, where parents’ interests and children’s interests come in conflict, it is generally reasonable that parents ought to give their children’s interests preference in cases where the children’s interests are fundamentally important (such as the case of their physical welfare) and the parent’s conflicting interests are not similarly important.6 Nonetheless, I concede that “best” is an impractical demand. A “best” approach to children’s interests may require parents to make unconscionable tradeoffs in an attempt to make negligible improvements to their children’s interests. For instance, it could be considered “best” for a middle-class parent to transfer custody of her child to a wealthy relative who may be able marginally to improve meaningful aspects of the child’s welfare with comparably greater financial resources.
How can such troubling implications be overcome? We can understand the best interest as satisficing rather than maximizing. Jeffrey Blustein (2012) proposes a model of satisficing parentalism that permits parents to make choices that serve the needs of their children even when the parents [End Page 285] are capable of making an objectively better choice for their child. A parent’s choice need not be best, but simply good enough. In this context, good enough means bringing up a child to the level when they will be fit for independent adult life within their community. This conception calls upon parents to think of serving their children’s interests not in terms of brute maximization, but as thresholds beneath which they may not permit their children’s interests to fall.
The Best Interest Standard is not to be dismissed due to its critics; it has survived because it appeals to the desires of parents and clinicians to promote the welfare of vulnerable children. It remains necessary to give conscientious thought to how the BIS can be focused to better guide the decision-making process. Rather than abandoning the BIS, the remainder of this paper will address ways to improve use of the standard in the context of elective pediatric surgeries.
CHILDREN’S INTERESTS, CHILDREN’S RIGHTS
While the Best Interest Standard is widely accepted as the appropriate clinical guidance for proxy decision making, we must give conscientious thought to how the BIS can be best interpreted when guiding the decision-making process. In the following sections, I will synthesize the discussion above and defend a reinterpretation of the Best Interest Standard: The best interest of the child is the path that (1) serves the child’s immediate, fundamental interests in the basic elements of life and health; (2) wherever possible, serves the totality of the child’s lifetime interests; and (3) these lifetime interests require priority be given to the child’s interest in making self-determined choices when she is able.
All iterations of the BIS call upon a proxy decision maker to maximize (or at least strongly promote) the interests of a patient by weighing the projected costs and benefits of a given health intervention. Before identifying which interests should take priority, it is necessary to establish what interests children hold. I propose four categories of interests held by all children: bodily, cognitive, psychosocial, and autonomy interests.
The first category, bodily interests, refers to the requirements to sustain life and maintain typical physical functions. Bodily interests include primary needs for healthy food, potable water, protective clothing, adequate medical care, shelter, and so on. The aims of medicine have traditionally been to serve the patient’s bodily interests by treating illness or injury and addressing sources of physical pain or discomfort (Kass 1975). Bodily interests also refer to the physical capacities necessary to [End Page 286] satisfy one’s personal needs, including the mobility, gross motor function, and dexterity required to conduct daily life activities.
Where bodily interests concern those goods a child needs to survive, the remaining three categories of interests held by children refer to those goods needed to thrive. Psychosocial interests concern both psychological well-being and interpersonal relationships. This category has to do with the quality of a person’s life, especially on a subjective conception of quality of life. The psychological dimension of psychosocial interests concerns emotional welfare, including a common desire to be free from depression, anxiety, or other psychological problems. The social component of this set of interests corresponds to the development and maintenance of interpersonal relationships, including relationships that we choose and those that are determined by forces outside our control (such as biological family). Cognitive interests refer to the development of traits, skills, and capacities related to the processing of information and the possession of knowledge. These are also closely related to developing the capacity for autonomy, especially self-determined decision making. Finally, all persons (including children) have autonomy interests that concern the ability to pursue projects and plans that are consistent with their values. While these may hold instrumental value by furthering some of the interests outlined above, autonomy interests are commonly understood has having intrinsic value: people value being able to determine the direction of their own lives, even if their decisions do not lead to optimal results (Griffin 1986, 53–55).
Like all persons, children hold interests in the goods and freedoms that are essential not only to sustaining life, but to promoting the kind of well-being that makes life worthwhile.7 These fundamental interests provide justification for the existence of certain rights and ground duties to others to honor those rights (Raz 1984). Children’s interests should be viewed as being threshold in nature. This threshold corresponds to a parental duty to protect and promote their children’s interests such that those interests do not fall below this permissible threshold. That threshold should be seen as correlating to a right that protects interests that are fundamental to the child’s life and well-being. I will not attempt to defend a complete list of children’s rights claims here, but otherwise confidently affirm that children hold rights in each of the four categories of interests outlined above. These include rights to bodily integrity, physical safety, the bases of emotional well-being, the possibility of pursuing satisfying relationships, adequate education, and the possibility of self-determination.8 [End Page 287]
The rights held by children correlate to duties by parents to protect and promote those rights.9 Parents may not pick and choose which of their children’s rights to honor. Parental duties require the satisfaction, rather than the maximization, of children’s interests. These duties also require that adequate justification be provided when a parent overrides any of her child’s rights. To respect a child’s rights limits the permissible actions that may be taken by parents: while parents are otherwise free to pursue their own goals and plans, the child’s rights may take precedence, and parents must identify paths to achieve these goals that do not conflict with the rights of their children.
Children’s rights set limits on permissible actions others may take toward that child. For instance, a child’s right to physical safety precludes any person from acting in a way that exposes her to unwarranted physical harm. In some circumstances, it may be necessary for a parent or other person to infringe upon a child’s right. For instance, a child’s right to bodily integrity may be overridden if the child has a health condition that requires surgical intervention. However, taking the rights of children seriously means that parents must minimize these infringements (both in number and in scope) while still satisfying their duties to protect and promote their children’s welfare. Because the duty to respect rights overrides the duty to maximize interests, respecting a child’s rights may also limit a parent’s ability to maximize her child’s interests (Brennan and Noggle 1997). Some guidelines for how parents should balance competing rights and interests are discussed in the following section.
CALCULATING THE BEST INTEREST
When EPS is pursued, the justification that is offered typically appeals to the child’s interests, making it necessary to articulate guiding principles for how the fundamental interests of children should be weighed by proxy decision makers. An appropriate place to begin is with a child’s present bodily interests. Without protecting these basic elements of life and health, it is impossible to promote the child’s other interests.
EPS does not enhance a child’s bodily interests; instead, it can put these at risk. While the list of possible risks varies significantly between procedures, we can make some general assessments. Surgeries requiring general anesthesia universally carry a small risk of death (van der Griend et al. 2011) and are associated with cardiac arrest in pediatric patients (Morray et al. 2000). All surgeries carry some risk of infection (Sax et al. 2011). Pain is an additional complication associated with nearly all surgical procedures. [End Page 288] Pediatric patients may be under-medicated following surgeries and thus subject to pain beyond their treatment threshold (Gauthier et al. 1998).
In acting as proxy decision makers, parents should consider the child’s bodily interests in proportion to the risks to life, comfort, and basic health posed by a given surgery. For instance, an outpatient removal of a birthmark poses a far lower risk of medical complications than a craniofacial surgery, and the weight given to the child’s present bodily interests should be lower for the former than the latter. Persons hold future-oriented bodily interests as well, and these are the basis for preventive medicine. While future-oriented bodily interests should be granted serious weight, they can reasonably be considered subservient to more urgent present interests.
Where bodily interests concern a child’s physical capacities for survival, psychosocial interests play a prominent role in a child’s sense of fulfillment and ability to thrive, and should play a significant part in the decision-making process concerning EPS. Concerns about a child’s atypical appearance making it difficult to form satisfying relationships frequently drive the decision to pursue EPS. A lack of social relationships, or strains in intimate relationships, can negatively impact psychological health, potentially leading to low self-esteem, depression, or anxiety. If a child is presently experiencing psychological problems or distress in her social relationships, then her parent should grant significant weight to her present psychosocial interests when considering EPS.
The case for placing significant weight on a child’s future psychosocial interests is unclear. Despite this, EPS is commonly justified as having a prospective psychosocial benefit to the child. I will refer to surgeries motivated by prospective psychosocial benefit as normalizing EPS. This category of surgeries includes those to address atypical or undesirable aspects of a child’s appearance, such as the repair of craniofacial abnormalities or ear pinning, as well as surgeries aimed at addressing atypical function, such as cochlear implant surgery for children with deafness or severe hearing loss. By acting preemptively in the hopes of minimizing psychosocial distress, a parent intends to improve the quality of her child’s life. However, prospective psychosocial benefits can be in conflict with children’s other interests, and normalizing EPS may actually diminish psychosocial interests. Many young children who have normalizing EPS are acutely aware of how the surgeries indicate that they are different from their family members and peers, and that they need to be “fixed” as a result (Alderson 2006). This may contribute to a sense of [End Page 289] “otherness” that has been linked to ambivalence about EPS by the patients who undergo these procedures (Asch 2006).
The moral permissibility of normalizing EPS is more difficult to establish than the more straightforward question of whether to pursue a medically preventive or therapeutic surgery. To account for why normalizing EPS may be ethically problematic while preventive surgeries typically are not, we must determine what distinguishes the two. There are three assumptions made in the pursuit of EPS that are not supported by the kinds of empirical evidence that are normally called for in preventive surgical interventions: (1) if not prevented, a psychosocial problem will develop; (2) that this problem will require surgery to resolve; and (3) that surgery will be the most appropriate means of addressing the psychosocial problem. Allow me to consider each of these in turn.
First, normalizing EPS’s appeal to the child’s psychosocial interests relies on an unsupported belief that the child will inevitably develop significant psychosocial problems as a result of her appearance or abilities. A child born with an atypical appearance that is left “uncorrected” is not necessarily a child who is doomed to a life of depression and isolation. The assumption that surgical means are required to “fix” such children ignores the many people who have led productive, fulfilling lives with a variety of atypical physical characteristics and abilities. In contrast, preventive surgeries generally require that there be an empirical basis to believe that surgery will have sufficient medical benefit to outweigh its associated risks. Given the wide degree of variation between persons in their psychological capacity to cope with and flourish amid adverse circumstances, it is especially challenging to predict how atypical appearance or ability will impact a person’s future psychosocial welfare.
The second assumption supporting normalizing EPS is that, if a psychosocial problem does develop, it will necessarily merit surgical intervention. This is at odds with how many children deal with the pains of growing up. Throughout childhood and adolescence, most people will face some kind of psychosocial trouble, whether be it teasing, situational depression, or low self-esteem. For most people, these psychosocial problems are growing pains—passing struggles that contribute to the development of coping mechanisms that come to be reflected in an individual’s self-concept and character. Children born with atypical appearance or ability may encounter psychosocial troubles to a more serious degree than others their age. While it is possible that this could lead to serious psychosocial difficulties, it is also possible that a child with [End Page 290] atypical appearance or ability could exhibit the same resilience found in other children, and that these children could experience no greater psychosocial troubles than typically experienced in childhood.
It is important to reiterate that this discussion is limited to preadolescent children, who generally haven’t developed the kinds of stable personality traits that would give parents sufficient information about their long-term capacities to make prudent decisions about surgery as a first-line therapy. For this reason, it will not be clear, at a young age, whether a particular child will or won’t exhibit the kind of stable emotional resilience necessary to cope successfully with atypical appearance or ability. No doubt this will become clearer as the child gets older (thus, an 8-month-old will exhibit no indication of resilience one way or another, while an 8-year-old is capable of expressing consistently strong, or weak, capacities in this area). A young child’s lack of stable personality traits is evidence for the imprudence of pursuing EPS as a routine, preventive line of therapy. One can delay EPS while protecting and promoting the totality of the child’s interests. It seems clear that one ought first to pursue lower-risk interventions, concurrently conducting a comprehensive evaluation of the traits of the child in consideration and circumstances to determine whether EPS will serve her long-term interests. It seems less clear that a parent can pursue EPS as a matter of preventive policy while also maintaining the same level of robust consideration for the child’s interests.
Finally, normalizing EPS is justified by an assumption that surgery will be the appropriate means of addressing the inevitable psychosocial problem. It is uncommon that high-risk interventions are pursued as a first-line therapy to promote the emotional welfare of children. People struggling with psychosocial problems are ideally ushered through a progression of care, starting with the lowest risk and progressing to higher-risk interventions. This progression of care is absent in cases where parents seek normalizing EPS as a preventive measure: parents move directly toward a high-risk intervention without first exhausting lower-risk alternatives or establishing that a higher-risk intervention is warranted. Lower-risk interventions, such as psychotherapy, not only have the potential to treat psychosocial symptoms a child is experiencing, but will also contribute to the kind of comprehensive evaluation of a child’s capacities and values necessary to determine if EPS is ultimately appropriate for that child.
The future psychosocial interests of any person are highly variable and largely unpredictable. There are common desires for stability, comfort, and intimacy that the majority of people share. Likewise, we can [End Page 291] expect most persons to experience periods of emotional highs and lows throughout the course of their lives. As a result, the best ways to serve a person’s psychosocial needs will vary significantly across time. Given this unpredictability, less emphasis should be placed on maximizing these long-term interests when considering EPS in relation to interests whose future status is more predictable.
Despite the unknowable nature of a child’s future psychosocial interests, there is one factor that reasonably calls upon proxy decision makers to grant significant weight to such interests: time. Some surgeries must be performed at particular points in a child’s development in order to be effective. A paradigm example is cochlear implants for children who are born deaf, who must have implantation surgery when they are still in the pre-speech phase of development for the implant to be maximally effective (Russell et al. 2013). Where the efficacy of surgical intervention is time-sensitive, it behooves parents to consider any future psychosocial interests that might be negatively impacted by foregoing surgery.
In addition to potentially compromising a child’s bodily and psychosocial interests, EPS can have a profound impact on a child’s autonomy interests—specifically her interest in making self-determined choices—by reducing her future options. Cognitive and autonomy interests require proxy decision makers to be forward thinking. When a parent chooses an elective surgery for the child, the child can never choose for herself whether to have that surgery. It is important to acknowledge that the options removed by EPS are not insignificant. Sovereignty over our bodies is widely recognized as a fundamental interest of all persons. Any permanent modification to the body—whether it is removing a birthmark or a malformed limb—infringes on this fundamental interest.
Parents must successfully account for a treatment’s effects on a child’s well-being, including her exercise of self-determination, when establishing whether EPS is appropriate. It is instructive to identify the exercise of self-determination as an interest distinct from the interest in developing the capacity for making self-determined choices. With children, it is necessary to consider both present and future interests in self-determination. In considering a child’s present autonomy interests, parents must make a context-specific judgment based not solely on the choice that must be made, but also the child’s expression of characteristics necessary for autonomous decision making.10 For example, more weight should be granted to a ten-year-old’s desire to have a birthmark removed from her face than a four-year-old’s desire to do the same, because the ten-year-old will likely exhibit [End Page 292] a greater capacity for understanding the risks of the surgery, weighing the option to have the surgery against the option of not having the surgery, and identifying the surgery as being consistent with her own values.
It should be clear that respecting a child’s present interest in self-determination is not an endorsement of liberationism. Parents are under no duty to grant children, even older children, the authority to independently make important medical decisions on their own behalf. Respect for a child’s present interest in self-determination must be a context-specific judgment. If the child’s present desire will undermine her fundamental interests in other categories, then it is permissible for a parent to undermine the child’s present autonomous or self-determined preference.11 A parent’s responsibility is to conduct a calculus that accounts for all of the child’s interests, of which present self-determination is merely one.
When considering a child’s future autonomy interests, the central consideration should be protecting the child’s future self-determination, especially her ability to pursue projects and plans that are consistent with her values. To this end, any decision that would foreseeably remove an important project or plan from a child’s future set of options requires the child’s autonomy interests to be weighed heavily. While it is impossible to predict what a child’s future plans may be, a parent can presume that sovereignty over one’s body is a matter of fundamental moral importance. Bodies are tightly connected to how humans experience life and develop and express concepts of self. Many people grow up feeling trapped by their bodies, either due to disability, aesthetic shortcomings, or genetic bad luck. Taking control of one’s body and exercising dominion over the physical self is a way that many people come to terms with physical traits they are unhappy with. Sometimes this means taking action to shape the physical self in a way that reflects what one would like her body to be like, rather than how one’s body is—for instance, through cosmetic surgery, tattoos, or exercise. In other cases, people choose radical acceptance of their current physical state, even if that state includes atypical appearance or abilities. This attitude is prevalent in the disability pride movement. How we treat our bodies varies significantly from person to person. Because of this, it is not possible to predict how a child will choose to engage with her physical self in the future, be it through alteration or acceptance, and it is not possible to anticipate whether a young child will ultimately choose to alter her body when she is able.
A parent must acknowledge that actions taken toward her child’s body carry significant moral weight. A parent deciding to pursue EPS on behalf [End Page 293] of her child meaningfully and permanently alters the child’s body, and also potentially alters the child’s relationship with her own body. This alteration robs the child of an important opportunity to give careful consideration to whether—and how—to reshape her body through surgery. A person who intentionally consents to alter her body is empowered by this choice: she shapes her body in accordance with her personal values and sense of identity. In contrast, a person having her body altered at the behest of someone else is disempowered, potentially having her body shaped in a way that promotes someone else’s projects, plans, values, or wishes for her identity. While there may be prevalent views across a population about what physical appearances or abilities are valuable, it is not possible to make “good guesses” about what a particular person will want her body to be like in the future based on these prevalent views, given that these values are not universal. Protecting a child’s future autonomy interests means protecting this right to make self-determined choices in pursuit of projects and plans about her body, that reflect her values, when she has the capacity to do so.
PORTRAIT OF AN ETHICAL FAMILY
While significant consideration has appropriately been given to the interests of the child, it is also important to recognize the dynamics of family that are associated with parental decision making for minor children. The BIS has been criticized as being too individualistic and failing to adequately account for the interests of parties other than the patient. In particular, it has been argued that maximizing the child’s interests in medical decision making can create unsustainable demands on parents. This section will explore the question of how decisions should be made when the preferences or interests of the parents are at odds with those of the child.
The specific duties held by parents begin with their responsibility to fulfill their child’s primary material needs—for food, clothing, shelter, medical care, and so on. Parents (and other persons) are also barred from abusing, neglecting, or exploiting children. Many parental duties are unique to the role of parent and are not shared by other adults. Among these parental duties is the requirement that parents provide affection, intimacy, and love for their children. Parents also have a duty to treat their children in such a way that valuing the child’s well-being honors the unique nature of that child (Mullin 2014). [End Page 294]
Finally, parents must raise their children in such a way that their children will possess the skills, competencies, and capabilities necessary to lead independent lives as adults. The preparation for life as autonomous, independent adults is accepted as one of the central goals of parenting (Bigelow et al. 1988).12 Parents should engage in autonomy-supporting measures that encourage their children to develop their own goals and values, care stably about some goals, and develop the self-control necessary to pursue those goals (Mullin 2014). Children should be adequately prepared to exercise independent judgment and critical thinking as adults, especially in the design of life plans that are consistent with their values. Parents have a duty to respect the child’s right to be free from interference in pursuing goals and projects that are consistent with her values. To this end, parents may not interfere in such a way as to intentionally preclude, for unwarranted reasons, the future goals and projects available to the child. For instance, a parent may not generally deny her child a formal primary and secondary education because doing so will greatly reduce the goals and projects available to the child in the future (such as pursuing higher education or being employed in many professional positions).
In general, parents are not permitted to choose what constitutes fulfilling their duties to promote the welfare of their children. Nonetheless, parents hold special obligations to their children that require a set of legal and social rights sufficient for exercise. For example, custodial rights allow parents to fulfill their duties to supervise the day-to-day care of their children, to engage in activities that promote their children’s well-being and development, and foster intimate relationships between parent and child. While a parent may not choose which parental obligations she fulfills, she is entitled to choose among alternative means of fulfilling those obligations. In general, parents ought to be protected from intervention by the state or other parties who would call upon them to choose one means of fulfilling her parental obligations over another, so long as the means the parent chooses are sufficient to satisfy the child’s fundamental interests. To accept this moral authority to choose how to serve a child seems consistent with a (limited) parental right, best understood as a stewardship right (Austin 2007). Stewards are those who are entrusted with something of great value that they are not owners of. Stewardship rights protect a parent’s ability to choose how to fulfill special obligations to her child—such as the obligations to secure an education, provide nutritious food, and provide [End Page 295] access to preventive and therapeutic medical care. Parents often have access to multiple avenues for fulfilling these obligations. For instance, a parent might choose among multiple pediatricians for the child’s healthcare needs, or select between private and public schools for the child’s education.
The stewardship conception grants parents permissible authority to select among these alternatives. It also grants parents the moral permission to try to influence the lives of their children. Parents can do so through satisficing choice mechanisms: when there is more than one way of satisfying a child’s fundamental interests, parents should be permitted to choose among alternatives. It is through these choice mechanisms that parents may express their own values and character, and attempt to influence the values and character of their children. Choice mechanisms reflect the conception that parents are not required to disregard their own interests once they become parents; they are free to pursue their own goals and projects and to try to raise their children in a way that is reflective of their values.
A steward may be required to undermine her own interests to promote the interests of her charge, in proportion to the value of the entity she is stewarding. In this vein, parents can be asked to undermine their own interests because the value of the child in their care is extremely high. The stewardship model acknowledges the power dynamic that is the center of parent–child relationships, which consists of a dominant superior party and a dependent subordinate. Stewardship rights require parents to minimize their authority in the name of their children’s future autonomy. Since parents will ultimately transfer care of their children’s lives to the children themselves, they are called upon to exercise a significant degree of restraint in directing the future lives of their children.
How does this discussion help us understand a parent’s role as proxy decision maker for a child who may undergo EPS? When deciding on the appropriateness of EPS, it is reasonable to ask parents to subordinate their own interests in the surgery. Some aspects of EPS are beneficial to parents. For instance, hearing parents may prefer cochlear implantation for a deaf child so that they can communicate in spoken language; religious members of the Jewish faith receive community benefits from circumcising their infant sons; families who endorse traditional gender conceptions may be most comfortable with sex reassignment of an intersex child; and so on. There are power dynamics within families that can lead to the interests of vulnerable members being undermined by more authoritative members. The parent–child relationship is a clear example of such a dynamic. A stewardship conception requires that parents who [End Page 296] are contemplating EPS subordinate their personal stake in the outcomes of the surgery, and instead hold the child’s interests as paramount. This is consistent with acknowledging the importance of giving a child’s interests priority wherever possible, especially when medical decisions impact more dominant members of the child’s family.
A NEW INTERPRETATION OF THE CHILD’S BEST INTEREST
In synthesizing the conclusions of this discussion, a new interpretation of the child’s best interest begins to emerge. In order to serve a child’s fundamental interests, it is evident that the optimal path is that which serves her immediate, fundamental interests in the basic elements of life in addition to her interests over the course of her lifetime. While predictions about how present choices may impact the future interests of children are necessarily imperfect, we can confidently identify the ability to make self-determined choices as a constant, fundamental interest. Respect for this interest supports a conclusion that proxy decision makers have a duty to grant substantial weight to the child’s ability to make self-determined decisions when she is able. In the case of children who are anticipated to become competent adults, this means parents are obligated to preserve important, optional choices for the child’s future exercise whenever possible.
This conception of the child’s best interest is consistent with accounts acknowledging a child’s right to an open future (Feinberg 1980). Children hold two distinct sets of rights. The first are dependency rights that call upon others to provide them with the basic instruments of life; we can identify these as the basis for parental duties. The second set, rights-in-trust, are to be preserved for the child to exercise when she is in a position to do so (as an emancipated, competent adult). These include the full range of rights enjoyed by adults, especially the right to self-determination.
Discussion of children’s autonomy interests tends to focus on ways to aid in the development of characteristics associated with autonomy, such as the cognitive capacities that facilitate self-determined decision making (Buchanan and Brock 1989), or to emphasize autonomy-supporting measures that foster a child’s ability to self-regulate her impulses in pursuit of long-term goals (Mullin 2014). While both are critical capacities for decision making, the development of capacities for self-determined decision making is separate from the exercise of self-determined decision making. To respect a child’s right to exercise self-determined decision making means preserving important options of choice. Possessing the relevant capacities to make self-determined choices is irrelevant if certain irreversible choices [End Page 297] are made on the child’s behalf before she has the capacity to guide the decision-making process. Both capacity and opportunity need to be present for a person to make a self-determined choice about a given project or plan.
As a result of time, place, genetics, and chance (among other factors), no child has a future that is completely open. Parenting certainly plays a role in shaping a child’s future choices. But a right to an open future should be understood not as a right to an exhaustive constellation of options, but rather as precluding the removal of important options from a child’s future autonomous exercise. From this perspective, parental choices are able to impact a child’s future, but should not consciously preclude the ability of children to make certain decisions as adults.
EPS removes an option from a child’s future constellation of choices. The question then becomes whether the justification for removing this option is sufficient to override the child’s right to make a self-determined choice regarding that option in the future. Therapeutic or preventive surgeries would almost certainly offer sufficient justification to override this right. But a more careful moral calculus that considers the full range of the child’s interests must be conducted when a parent is considering EPS.
The best interest cannot be one that closes the door to an important future option as a matter of choice. There are many important future options that should be available to children, but those that I am concerned with involve future options about a child’s body. Due to the intimate relationship between the physical self and self-concept, options about bodies should always be considered important. We can reasonably assume that any permanent choice about a child’s body will impact some aspect of that child’s definition of self, and that our definitions of self impact significantly our values, goals, and life plans. Thus, a child’s body is a fundamentally important component of her capacity to exercise autonomy.
If a therapeutic or preventive surgery removes an option from a child’s future constellation of choices, it is the health need that this surgery responds to which removes the important option, not the surgical intervention. For instance, Jane is in a car accident and her right leg is nearly severed. At the hospital, physicians determine that her leg cannot be saved and perform an amputation with the permission of Jane’s parents. In this case, it is not the amputation that limits Jane’s future options, but the accident itself. In contrast, if an important option is removed through elective surgery, it is the choice itself that reduces the future options of the patient. Andrea is born with a malformed right leg. While this limits Andrea’s mobility and affects her appearance, the leg causes her no pain, [End Page 298] and she is otherwise healthy. Andrea’s parents pursue an amputation of the leg so that Andrea can wear a prosthetic and enjoy a marginally greater range of mobility. In this case, it is Andrea’s parents who close the door to Andrea making a decision about her leg as an adult. Like the example above, both sets of parents respond to incidents outside their control when authorizing amputation; however, only Andrea’s parents actively chose a surgical intervention.
When a parent authorizes EPS for her child, it is often justified by the presumption (or hope) that the surgery will provide significant gains to the child. Because EPS is not medically indicated or preventive, significant gains might fall under categories such as ability, psychosocial welfare, aesthetics, or some combination thereof. Like all forms of EPS, the pursuit of such surgeries on the basis of significant gains ought to be regarded cautiously. Significant gains do not occur in a vacuum, and often involve trade-offs between conflicting sets of children’s interests: a significant gain in one area might lead to a significant loss in another. With respect to EPS, losses will include the pain and physical risks of surgery and recovery; and an infringement on the child’s autonomy interests, which are curbed when permanent choices about the child’s body are made by proxy decision makers at a time when the child is unable to choose for herself. EPS could also result in potential negative psychosocial effects if the child interprets the surgery as indicating that there is something “wrong” about her body that needs to be “fixed.”
While children have an important interest in future self-determination, there are instances where this interest may permissibly be overridden. These will involve situations where a child’s present welfare suffers, and where surgery could presumably improve her welfare. It is not clear that atypical appearance or limitations in mobility or ability themselves represent a significant detriment to a child’s welfare. It is the context in which a child experiences such phenomena that has relevance for determining whether EPS is appropriate. It seems most plausible that EPS is justified only when atypical appearance or ability constitute a significant likely impairment to the child’s ability to function and flourish; when such impairments cannot be overcome through non-surgical means; and when such impairments can be substantially improved through surgical intervention.
In many cases, such justification for EPS will arise from psychosocial difficulties the child experiences as the result of atypical appearance or ability. It seems that a parent could permissibly pursue EPS on behalf of her child in cases where the child is experiencing real pain—for instance, [End Page 299] suffering extreme emotional distress in response to bullying (Little 1996). Such extreme emotional distress has been linked to other risk factors, including self-harm (Fisher et al. 2012) and suicide (Horton et al. 2016; Klomek et al. 2007), which extend beyond the child’s psychosocial welfare and endanger her bodily interests. We can identify a reasonable limit to the psychosocial harms and associated physical risks a child should be exposed to in the name of preserving her right to future self-determination. To this end, when a child’s present psychosocial welfare suffers in such a way that she experiences sustained and acute psychosocial difficulty that could be mitigated by EPS, this would provide sufficient justification to override her right to self-determination in regard to this surgery.
There is a nontrivial distinction here, and that is that a child must experience a serious harm, psychosocial or otherwise, for removing an important future option via EPS to be permissible. In such cases, the significance of the gain the child stands to enjoy outweighs her interest in future self-determination. It does not follow that it is routinely permissible to prevent psychosocial trouble through EPS. Recall that many of these surgeries are performed on infants and toddlers—children too young to appreciate what it means to be “different.” These children could grow up to experience no significant difficulty due to atypical appearance or lacking certain physical abilities. When surgeries are performed on such children at very young ages, these children are precluded from the opportunity to determine for themselves whether to pursue these surgeries. Even in children who are experiencing mild or moderate emotional distress as a result of atypical appearance or ability, parents have a duty to first pursue non-surgical means to alleviate that distress. Parents whose children are experiencing such extreme emotional distress that they are at risk of self-harm or suicide may not have the option of exhausting lower-risk options before proceeding to EPS, although in such cases, parents should pursue appropriate mental health care in addition to surgical intervention. Attentive parents may notice risk factors before the distress reaches such a critical state, preserving the ability to first pursue lower-risk interventions. By exhausting lower-risk options first, parents illustrate respect for the totality of a child’s interests. Non-surgical interventions promote a child’s autonomy interests by making an honest attempt to preserve her ability to make self-determined choices about her body when she is competent. [End Page 300]
OUR CASES, REVISITED
1. Holly: Before she is taken home from the hospital, Walter and Skyler are considering which surgical option to pursue to address the congenital absence of long bones in their daughter Holly’s legs: amputation or limb lengthening. Either choice will permanently remove for Holly the option of choosing an alternative as an adult, including the alternative of leaving her legs unaltered, whereas forgoing surgery will preserve the option of choosing either alternative when she is able. In this case, forgoing surgery of any kind is the most appropriate option as it best respects the totality of Holly’s interests.
2. Jesse: As a boy experiencing extreme emotional distress as a result of a cleft lip and palate, Jesse’s story exemplifies a legitimate claim to pursue EPS and represents a scenario where present significant gains to the patient’s psychosocial welfare outweigh his other interests, including his interests in future self-determination. At present, Jesse’s future autonomy interests demand less consideration than his present psychosocial interests, which have fallen beneath a minimal acceptable threshold, as evidenced by his self-harming behavior. At ten years of age, Jesse has likely begun to develop the characteristics required for him to make a decision of this magnitude. Although this development is likely incomplete, he should nonetheless be able to participate in a decision-making process in a way that is meaningful and significant. Finally, Jesse’s parents have pursued, and exhausted, non-surgical means to address Jesse’s distress before considering surgery, illustrating respect for the totality of his interests.
3. Flynn: What is the appropriate course of action for Flynn, the deaf infant whose parents are considering a cochlear implant? Cochlear implants represent a particularly challenging ethical question for two reasons: the timing required for the surgery to be effective, and their nonpermanence. On the matter of timing, a parent whose child is born deaf is forced to make a decision about cochlear implantation before the child will be able to participate in the decision-making process in a meaningful way, because the implants are maximally effective in pre-speech children. This means that, no matter what decision is made, a child will not have the opportunity to provide meaningful input about the prospect of surgery. To consider the non-permanence of cochlear implants, it may appear that they do not permanently close a door to a child’s future option. Ostensibly, because Flynn could remove an implant later in life, his ability to choose whether [End Page 301] to continue to use the implant is preserved. The insertion of an implant poses practical problems in the sense that he may not be raised to speak sign language or attend schools for deaf children. These could be mitigated if Flynn’s parents make sustained efforts to connect Flynn to the Deaf community—especially by ensuring that their son learn and utilize sign language and spend time with deaf children or adults. Such efforts may not be possible for all parents, especially parents with limited resources or those who live in communities with few (or no) deaf members. Taken in total, it appears that we must understand the choice about cochlear implantation as potentially removing an important future option from the child either way. In this way, cochlear implantation is distinct from other forms of EPS. The permissibility of cochlear implant surgery must be evaluated in terms of Flynn’s other interests, be they his bodily interests, cognitive interests, or present and prospective psychosocial interests, the totality of which may make this form of EPS an acceptable option for Flynn and his family.
Most parents seek to protect and promote their children’s interests to the best of their ability. However, balancing a child’s (sometimes competing) interests requires a delicate moral calculus that is challenging to execute with precision and confidence. Because children are developing the characteristics necessary for making their own medical decisions, parents have a duty to meaningfully consider all of their children’s interests when authorizing elective procedures on behalf of those children. This includes a duty to meaningfully consider the child’s future autonomy interests, which are often undermined by elective pediatric surgeries. There are limits to a parent’s duty to promote the autonomy interests of her child—namely, that a child’s future choices can permissibly be limited only if doing so will address a present, serious harm to any of the child’s other interests. In the absence of such compelling reasons, parents ought to exercise restraint in their authorization of elective surgeries that permanently alter their children’s bodies.
Maggie Taylor holds an MA in Public Policy from The George Washington University. She is a PhD candidate in Philosophy at the University of Colorado at Boulder. Her research interests include applied medical ethics, epistemology, and prudential value theory.
This paper grew out of my M.A. thesis at The George Washington University. I am especially indebted to David D. DeGrazia, who not only chaired the committee, but who continuously supported my research with patience, insight, and immense knowledge. I would also like to thank Jeffrey Brand, Paul Churchill, and Tadeusz Zawidzki, who advised me at various points in the development of this project. Finally, I am grateful to the anonymous referees at KIEJ for giving me helpful comments that improved this work.
1. In the context of this discussion, I consider non-parental legal guardians to be analogous to parents, as they exercise similar authority to direct the healthcare of minor children under their custody. I also assume that legal guardians will share an intimate relationship with the children they care for.
2. Some argue that circumcision performed for religious reasons should be permissible, because it results in no net harm to the patient and falls within the realm of reasonable actions taken by parents to rear children as they see fit. First, the claim that infant circumcision causes no net harm is dubious: it undeniably causes pain, however temporary. It also permanently alters the child’s body at a time when he cannot provide even cursory assent to the procedure. Finally, the foreskin contains the highest concentration of nerve endings in the penis, and its removal leads to a reduced capacity for sexual pleasure. In contrast, there is, at best, limited benefit to the patient by being circumcised in infancy. The claim that membership in a religious community counts as a benefit to the child is debatable, as an infant cannot enjoy many benefits of community membership. See van Howe 2012 and Bronselaer et al. 2013.
3. It should be noted that the BIS has several applications, including as grounds for legal intervention by the state when it is found that a child’s welfare is at risk. For the purposes of this paper, I am interested solely in its application to proxy medical decision making.
4. For example, the American Academy of Pediatrics Commission on Bioethics writes, “usually, parental permission articulates what most agree represents the ‘best interest of the child’” (American Academy of Pediatrics Commission on Bioethics 1995, 315). Similarly, the American Medical Association writes, “When there is legitimate inability to reach consensus about what is in the best interest of the child, the wishes of the parents should generally receive preference” (American Medical Association Council on Ethical and Judicial Affairs 2008).
5. An important and valuable objection to the language of “best interests” that I here use perforce is that it might lead some parents—especially mothers, who are socially expected to be self-sacrificing—to feel guilty for not doing enough to maximize their children’s interests. But it is probable that many mothers would face such challenges regardless of any standard that is adopted for clinical decision making. In any event, the imperative to be self-sacrificing does not seem to be an essential feature of the BIS; instead it is a reflection of problematic social norms that place unfair burdens on mothers. While it is true that parenting universally requires some level of self-sacrifice, the satisficing conception of the BIS I defend here acknowledges that the moral demands of parenthood should not be understood as requiring parents to surrender all other important interests in favor of their children.
6. There are two features of the parent–child relationship that make this reasonable. The first concerns how adults acquire parental duties to particular children. One plausible view, which distinguishes between procreation and parenting, is that parental duties are incurred when a person consents to undertake the role of custodial parent to a particular child (Archard 2010; Brake 2010). The second relevant feature is the inherent vulnerability of young children, who rely on their parents not only for routine care, but to act as protectors and promoters of a range of their interests.
7. Significant literature looks specifically at childhood goods, or those goods that occur in childhood that are intrinsically valuable that do not correlate to the goods of adult life (Brennan 2014; Gheaus 2015a and 2015b; Weinstock 2016). Such accounts of childhood goods caution against viewing children’s interests as mere training needs for the adults children will become. I am sympathetic to the childhood goods account and believe there is truth to the claim that childhood holds age-specific goods. What I argue here is not that the interests of children qua children are not to be taken seriously, but rather, that the context of EPS requires us to consider the interests of the adults that children will become, because both will inhabit one and the same body. When an action that permanently alters a child’s body is made in an effort to preserve the goods of childhood, that action necessarily alters the body that the child will have in adulthood—and thus, infringes in a meaningful way on the rights of the adult.
It does not seem to be the case that delaying or forgoing EPS will infringe on many of the childhood goods identified in the literature (Brennan 2014, 42), including the opportunity for play, physical affection, relationships with other children or adults, or physical activity. It is the case that the underlying presence of atypical appearance or ability might risk some childhood goods, including a child’s emotional well-being; it is also clear that surgical interventions pose risks to childhood goods, including physical well-being and health. It might be the case that when EPS is motivated by the presence of atypical appearance or ability, it is that atypical appearance or ability itself which poses a significant threat to childhood goods.
8. While this conception of rights holds that interests generate rights, it does not follow that all interests generate rights. A child may have an interest in eating ice cream for dinner, but she cannot claim a right to dine on Ben and Jerry’s. Only those interests that are vital, such as those central to human life and flourishing, generate rights (Raz 1984).
9. There is a long tradition of viewing rights as directly correlating to duties; see Bentham 1962; Ross 2002. The notion that all rights generate duties is subject to debate; see Lyons, 1970; Raz 1984. Even accounts that deny that all rights generate duties generally agree that the parent–child relationship is an instance where the child’s rights plausibly generate parental duties.
10. I am assuming a gradational model of autonomy where the capacity to make self-determined decisions is context-specific, which views autonomy as points on a scale. This is in contrast to binary models of autonomy, such as the early account of autonomy proposed by Harry Frankfurt, which present an agent as being either autonomous or nonautonomous based on the relationship of the agent’s actions to her own preferences. For a more thorough view of such an account, see Frankfurt 1970. It is notable that Frankfurt’s own views on autonomy changed since the publication of this early account. See Frankfurt 1999, 129–34.
11. Such paternalistic action is reserved for children based on the presumption that their capacities for the exercise of autonomous decision making are incomplete. In the case of competent adults, curbing one’s self-determined actions “for their own good” is generally regarded as impermissible (Beauchamp and Childress 2009, 220–23).
12. While I am operating under the assumption that the children in question will grow to be independent adults, it is important to acknowledge that even children with disabilities that will prevent them from leading independent lives possess autonomy interests. For further discussion, see Silvers and Pickering Francis 1995.