Right of Informed Refusal for Minors Research Paper

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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.

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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…

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…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….....

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