Right of Informed Refusal for Minors

End-of-Life Decision Making for Minors When the Minor Should be the Decision Maker
Today, the right of adults to refuse medical treatment when they feel it is not in their best interests is universally acknowledged, and physician-assisted suicide is even legal in nine states and the District of Columbia (Physician-assisted suicide, 2019). A growing number of health care providers are also maintaining that the right to refuse medical care extends to young people as well, but this issue is particularly contentious because the vast majority of adults in the United States believe that children need and deserve special protections that preclude end-of-life decisions. Drawing on a virtue theoretical framework, the purpose of this paper is to examine the arguments in support of and against allow minors to make end-of-life decisions for themselves, followed by a summary of the research and important findings concerning this issue in the conclusion.
Review and Analysis
On the one hand, there are increasing calls to allow young people to actively participate in their health care, including making decisions concerning interventions that are intended to be in their best interests, but which may involve long-term pain and debilitation. On the other hand, though, most adults recognize that children typically lack the background, experience and cognitive abilities to making life-changing decisions on their own. Against this backdrop, it is not surprising that the question as to whether minors should be allowed to make the decision to end their lives has become especially controversial.
Many people would likely feel that minors are unable to ascertain the gravity of such decisions because they lack the life experiences that underscore the fact that people can and do get better over time. This view is congruent with the legal definition provided by Black’s Law Dictionary (1990) which states that a minor is “an infant or person who is under the age of legal competence. In most states, a person is no longer a minor after reaching the age of 18 years though state laws might still prohibit certain acts until reaching a greater age such as purchasing liquor” (p. 997). The legal definition of minor indicates that all of the states place certain limits on the rights and actions of younger people, such as the right to drive a vehicle or enlist in the armed forces.
Given that the right to drive or purchase liquor can be regarded as trivial compared to end-of-life decisions, proponents of allowing minors to make this fateful decision are clearly faced with some daunting arguments in opposition. Nevertheless, some health care practitioners are advocating for greater involvement of minors in their health care decisions. In this regard, Katz and Webb (2016) emphasize that, “Informed consent should be seen as an essential part of health care practice; parental permission and childhood assent is an active process that engages patients, both adults and children, in their health care” (p. 30).
Rather than relying on an arbitrary demarcation date concerning legal age, these and other like-minded clinicians point out that young people mature at different rates, and minors should be allowed to actively participate in their health care decisions when they reach a certain level of maturity. For instance, Katz and Webb (2016) also note that, “Pediatric practice is unique in that developmental maturation allows, over time, for increasing inclusion of the child’s and adolescent’s opinion in medical decision-making in clinical practice and research” (2016, p. 30). This observation suggests that the ability of minors to participate in their health care decisions exists along a continuum ranging from zero at birth to adult levels which may occur at any time prior to their legal age emancipation.
Clearly, the determination as to the precise moment that minors gain adult-level competence for their health care decisions is highly subjective, and even the tools that are used to gauge maturity levels vary in their abilities to develop an accurate assessment. These limitations mean that health care providers must depend on qualitative factors such as “the experience, perspective and power of children in the collaboration between pediatricians, their patients, and parents” which “remain an essential guide for modern ethical pediatric practice” (Katz & Webb, 2016, p. 31). While very young children may object vehemently to receiving potentially life-saving vaccination injections, parents recognize that it is in their best long-term interests and therefore typically override such objections. Likewise, some young people may abjectly refuse to attend their first day of kindergarten due to their perceptions of what takes place in schools, perceptions that have been fueled by high-profile media reports of violence and mass shootings in the nation’s schools unless forced to attend by their parents. These issues beg the question as to when a minor can be regarded as possessing the mental faculties to make informed decisions about their health care, including end-of-life decisions.
The enormous constellation of variables that are involved in making this determination and the final and unalterable solution an end-of-life decision represents, though, mean that this determination is not only difficult and complex, it is also absolute with no recourse available. Indeed, over time, a minor may come to realize that the pain they are forced to endure due to a terminal condition can be mediated and life is far too precious to end it prematurely. The American Academy of Pediatrics’ statement on informed consent takes these issues into account by stating, “Patients should participate in decision-making commensurate with their development; they should provide assent to care whenever reasonable” (as cited in Katz & Webb, 2016, p. 31).
The policies that are advocated by the American Academy of Pediatrics concerning the active involvement of young people in their health care decisions are gradually turning towards a stance that judges young people to be sufficiently mature when they grow older and reach adolescence. This process, however, has also been characterized by concerns over protecting young people as a vulnerable population. It is a straightforward matter to understand how some children could be manipulated by adults into making decisions that were not in their best long-term interests, including end-of-life decisions. In fact, it is reasonable to suggest that some parents with a terminal child that is suffering and bankrupting the family with medical bills may be inclined to encourage an end-of-life decision on the part of their child. These types of concerns have made substantive progress in affording minors the right to make end-of-life decisions slow in coming. As Katz and Webb (2016) emphasize:
Although some aspects of decision-making in pediatrics are evolving in response to changes in information technology, scientific discoveries, and legal rulings, recent reports have noted that change can be slow. Despite the long-standing stance of the American Academy of Pediatrics that older children and adolescents should be involved in the medical decision-making and consent process, there still has not been widespread understanding and endorsement among practitioners of the concept of pediatric assent or refusal. (p. 32)
These constraints suggest that clinicians are wary of promoting informed consent rights for minors because they may lack of ability to make such life-ending decisions on their own. This view is consistent with a virtue theoretical framework which holds that, “Possessing a virtue is a matter of degree. To possess such a disposition fully is to possess full or perfect virtue, which is rare, and there are a number of ways of falling short of this ideal. Another way in which one can easily fall short of full virtue is through lacking phronesis — moral or practical wisdom” (Hursthouse & Pettigrove, 2018, para. 3). Nevertheless, even a virtue theoretical framework has its limitations when applied to issues such as at what point minors gain the reasoning ability and wisdom that only comes from life experiences (Salsberry, 1999).
Notwithstanding such concerns, though, there is a growing body of scholarship that confirms children are maturing more rapidly today and ever before in human history. In this regard, Williams (2012) reports that, “Studies have found that children are maturing more rapidly than ever before” (para. 1). In fact, young people are undergoing puberty at far early ages than in the past, but emotional development may not correspond to sexual development so the issue concerning when minors should be allowed to actively participate in their health care decisions remains largely unanswered with any precision (Williams, 2012). Consequently, the age of puberty is not a useful demarcation point for the purposes of making end-of-life decision, but as adolescence progresses, this ability becomes more likely. For instance, Williams (2012) points out that, “Adolescence follows puberty, they're not concurrent. Puberty is the physical change, adolescence the psychosocial transition, from childhood to adulthood. Just because a boy has developed pubic hair doesn't mean he's made the leap” (para. 6).
These trends have compelled a growing number of clinicians to reexamine their views about the participation of minors in their health care decisions, and while the process may be slow, current indications within the pediatric community suggest that such informed consent rights for minors may be codified in legal statutes in the foreseeable future. For instance, Katz and Webb (2016) conclude that, “The discordance between current clinical practice and previously published guidance may reflect the gradual evolution of change within the culture of medicine or perhaps suggests a need to build on the discussion of informed consent, assent, and refusal for children and adolescents” (p. 32).
All young people, however, are unique and it would seem impractical for clinicians with limited interactions with them to presume to be able to gauge their maturity levels with any degree of accuracy. Indeed, even parents may lack this ability despite having intimate day-to-day interactions with their children since maturation occurs gradually over time. These factors mean that it is unlikely that minors will be extended the same level of informed consent as competent adults, but there may be exceptions made on a case-by-case basis depending on the circumstances and the age of the minor.
This assertion is consistent with existing laws in states that vary with respect to the age at which minors can get married or join the military with parental consent. Since minors aged 17 years and over are regarded as possessing the maturity levels needed to make the decision to enlist in the armed forces (provided they have parental consent), it is reasonable to posit that older children and adolescents will increasingly be afforded the same level of legal informed consent authority as enjoyed by competent adults in the future, particularly if current trends towards earlier maturation continue.
In fact, Lemmons (2009) maintains that despite the subjective nature of the assessment, most minors possess the requisite knowledge, mental faculties and maturity that are needed to make end-of-life decisions. For example, according to Lemmons (2009), competent adults enjoy the right to informed consent and its corollary informed refusal of medical care, and these fundamental rights are acknowledged globally. Because minors in the United States are also citizens protected by the Fourteenth Amendment, Lemmons argues that they also have a right to informed consent and informed refusal. For instance, Lemmons asks, “Do minors also have the right to refuse medical treatment? Can a minor refuse even life preserving care?” (p. 479). Moreover, the same overarching objective to achieve clinical outcomes that are in patients’ best interests is also extended to minors and used as a guide for making the determination as to whether they should be allowed to actively participate in the decision-making process. In this regard, Lemmons adds that:
The interests of the involved parties (minor, parents and state) have to be weighed against each other case by case. A thorough examination of the available case law shows that the best interests of the minor are paramount. This ‘best interests’ standard guides judges in their making of a decision. However, this is certainly not always in accordance with reality. In fact, minors can be mature enough to refuse treatment at a much earlier time than the age of legal majority, whatever the consequences of that refusal may be (emphasis added). (p. 480)
This observation, though, does little to clear up the main question with respect to precisely when minors are capable of making such end-of-life decisions. In other words, does a minor aged 17 years and 364 days lack this ability but will magically acquire it overnight? What the debate boils down to, then, is whether adults, including parents, family members and health care providers, have the ability to make this determination on behalf of minors. As noted above, though, a case-by-case assessment will facilitate this determination, and clinicians will be guided by the tenets of virtue theory in evaluating the circumstances to arrive at a decision concerning what is truly in minors’ best interests.
This “best interests” objective on the part of health care providers is also congruent with the tenets of a virtue theoretical framework which maintains that “Virtues within this framework are those character traits that are consistent with caring and are assistive in the fulfillment of these aims” (Salberry, 1999, p. 156). In addition, there are also increasing calls from the health care community to promote the best interests of minors by extending the right to make end-of-life decisions to so-called “mature minors” (Bryden, 2016). As noted above, children are maturing more rapidly today and ever before, so it is reasonable to suggest that older children and adolescents will gain the level of legal authority to informed consent and informed refusal as their adult counterparts within the next few years.
Until that time, however, parents and health care providers are still faced with the daunting enterprise of attempting to make an accurate determination as to whether a minor with a terminal medical condition possesses the ability to make end-of-life decisions on their own. Even elderly adults with terminal disorders who are suffering need and deserve counseling concerning their end-of-life decisions, and this need is far more pronounced for young people who may lack the real-world experiences and knowledge that are needed for this purpose. In sum, although minors currently lack the legal ability to make end-of-life decisions on their own, the best interests objective of clinicians is increasingly taking their views and desires into account when formulating treatment plans, extending even to the decision to end their lives.
Conclusion
In most human societies, children are placed on lofty pedestals where they enjoy a wide array of special treatments, benefits and freedoms. A common refrain heard in many public debates demands that “we think of the children first,” and this view is held by the overwhelming majority of Americans today. This special status, though, essentially ends when it comes to providing minors with the same right to informed consent and informed refusal as adults. The research was consistent in showing that this view is gradually changing, due in large part to the earlier maturation rates of young people today together with more enlightened views on the part of the health care community.
References
Black’s law dictionary. (1990). St. Paul, MN: West Publishing Company.
Bryden, J. (2016, February 25). Medical help in dying should be widely available, with few restrictions: Report. The Canadian Press, 6.
Hursthouse, R. & Pettigrove, G. (2018, Winter). Virtue ethics. The Stanford Encyclopedia of Philosophy. Retrieved from https://plato.stanford.edu/archives/win2018/entries/ethics-virtue.
Katz, A. L. & Webb, S. A. (2016, August). Informed consent in decision-making in pediatric practice. Pediatrics, 138(2), 30-37.
Lemmens, C. (2009, September). End- of- life decisions and minors: do minors have the right to refuse life preserving medical treatment? A comparative study. Medical Law Review, 28(3), 479-497.
Physician-assisted suicide. (2019). CNN. Retrieved from https://www.cnn.com/2014/11/26/us/ physician-assisted-suicide-fast-facts/index.html.
Salsberry, P. J. (1999, January 1). Caring, virtue theory, and a foundation for nursing ethics. Scholarly Inquiry for Nursing Practice, 6(2), 155-160.
Williams, Z. (2012, October 25). Early puberty: why are kids growing up faster? The Guardian. Retrieved from https://www.theguardian.com/society/2012/oct/25/early-puberty-growing-up-faster.