Aiden Ford

Congratulations to Aiden Ford—this essay is a winner in the Harvard FXB Health and Human Rights Consortium 2017 Student Essay Competition. Aiden Ford recently graduated from the University of Connecticut with a degree in Physiology & Neurobiology and Neurodevelopment & Health.

Introduction

Pediatric medicine can be considered a three-way partnership among physicians, parents, and the child-patient, a characterization evoking values of negotiation, compromise, and discussion. However, is this partnership defined by these principles in practice? During pediatric clinical encounters, the body of the child is in play, yet their voice may not be guaranteed due to age or perceived immaturity. Using an analytical human rights lens framed by the Convention on the Rights of the Child (CRC), this paper asks, What is the real contribution of a child to their medical future?

Opened for signature in 1989, the CRC recognizes the distinct place occupied by the child in international human rights rhetoric and law.1 As evolving bodies and persons, children live and grow along a complex spectrum of autonomy and control that requires constant negotiation with the actors invested in their survival and well-being, in particular their guardians and the state claiming them as citizens. This transitory position leaves them open to increased vulnerability and entitles them to “special care and assistance,” per the CRC.2 The CRC defines children’s intrinsic rights, allocates responsibility for their care to the state, and theoretically creates a mechanism for the invocation of those rights when they are violated. In total, 196 nations have ratified the CRC, including every member state of the United Nations except the United States.

Using the intensely emotional choice to pursue or decline life-saving or sustaining medical treatment as an exemplar, this paper first outlines the specific set of child rights that defines the role of the child in medical decision making and then explores the weight and power held by the child’s voice in this specific clinical encounter. In theory, implementation of the CRC ensures the right of the child to exercise their autonomy in clinical spaces, especially when making life-changing decisions. US policy and practice provide an interesting space to examine this reality because the American Association of Pediatrics evokes rights language but cannot implement an explicit human rights-based approach since the government has not ratified the CRC.

The right to participate in medical decision making

Five specific rights in the CRC intersect in medical spaces to designate the necessity of a child’s participation in decision-making processes. First, article 6 protects the child’s inherent right to life and assigns responsibility for the child’s development and survival to the state. Together with article 24, which confirms that children have the right to the “enjoyment of the highest attainable standard of health and to facilities” that promote such a standard, article 6 ensures that children have access to medical treatments, technologies, and systems that promote their well-being.3 However, when engaged alone, the rights outlined in articles 6 and 24 still exclusively allocate authoritative power to the state, making the child a passive participant in their experience and pursuit of health.

A second set of rights within the CRC empowers the child as an active stakeholder. Article 13 gives the child the right to freedom of expression, which includes the freedom to seek, receive, and impart information; and article 12 assures that states will recognize the ability of a child, deemed capable, to express their views on matters that affect them (for example, medical care), especially in administrative and institutional settings. The CRC acknowledges that the weight given to the child’s view may change depending on the child’s “age and maturity.”4 More fundamentally, however, article 12 validates the child’s opinion, which in turn obligates the state to ensure the child’s seat at the table. Therefore, representatives of the state and its interests must recognize these rights.

Finally, article 3 states that in all actions concerning children, the best interests of the child will be a primary concern. “Best interest” is a controversial concept that shapes much of the medical literature because the stakeholders outlined above often have conflicting understandings of it in practice. Historically, the state has wielded “best interests” to align itself with the child against the desires of parents and communities. Naomi Rodriguez, who studies “best interest” in practice at the US-Mexico border with regard to decisions on child welfare, argues that “best interest” is intrinsically dependent on the specific circumstances of each child and can be manipulated by the state to promote state interests and ideologies over the rights of families and children.5 Therefore, when assessing the accessibility of rights for children, it is important to understand if and how children are able to contribute to discussions concerning their own best interest. Ultimately, the rights outlined in these five articles (3, 6, 12, 13, and 24) theoretically empower children to be stakeholders in the pursuit of their own health and well-being.

However, the formal process of rights claiming for children is complicated by debates around capacity and ability. Children, especially in the early stages of development, are still conceptualizing relationships, decision making, morality, and self. These changing understandings of the world may objectively interfere with their own best interests as well as rights held by the state and their parents. To clarify the relationship between the capacity (mental, physical, moral, and so on) of children and the invocation and enjoyment of their rights, the United Nations Children’s Fund collaborated with the Innocenti Centre and Save the Children Sweden to conduct a study entitled The Evolving Capacities of the Child.6 This report investigates how cultural understandings of the ability of the child affect the implementation of rights in different systems. As argued by the study’s authors, when societal institutions like courts, housing systems, and hospitals wield power, “that power is exercised without appropriate reference to children’s capacities.” 7 The Evolving Capacities of the Child and the CRC raise questions of how children’s named rights are manifest in existing systems and what they mean for the autonomy, choice, and voices of children worldwide. This paper will assess the medical moments in which children should be able to exercise their rights as outlined in the CRC and in The Evolving Capacities of the Child’s analysis of participatory spaces and institutions.

To answer such questions, we must look at rights in practice, for, as Jessica Jerome argues, “rights find their meaning in situated contexts,” which are the key to understanding “how they enter into the life-worlds of individuals and social groups.”8 Thus, this paper focuses on the space in which families and practitioners must make medical decisions about a child’s end-of-life options, specifically life-saving and sustaining medical treatment. I will examine how those rights are manifest in medical policies and practices in the United Kingdom, which has ratified the CRC. I will then apply the same analytical lens to policies and practices within the United States. Despite the fact that the United States has not ratified the CRC, the ideology and language of human rights pervade the published literature, resulting in a fascinating opportunity to understand how children engage in autonomous decision making.

The clinical example: Life-saving or sustaining medical treatment

The fundamental driver of life-sustaining medical treatments (LSMT) and end-of-life care is the best interests of the child, with various adult stakeholders generating the conversation. Parents represent the best interest of the child and of the family, introducing space for family values, morals, and relationships. Physicians and health care practitioners also act on behalf of the best interests of the child, although their position is influenced by the obligations of the state and the culture of biomedicine to protect life. This dynamic inspires the question, What space is allocated to the child in deciding the course of their own treatment? What information is given to the child about the meaning of pursuing LSMT and the futures it designates? Do children have the right to such knowledge and the power to contribute to that future?

To briefly clarify, LSMT usually consists of highly technologized interventions (such as ventilators, respirators, or dialysis) implemented exclusively with the goal to preserve life in cases of terminal illness. LSMT options are definitively not curative. The choice to pursue LSMT is deeply painful and complex, and no universal protocol exists for the decision-making process. Each case requires negotiation and recognition of the different, and occasionally conflicting, goals and desires of those participating. This is a necessary setting for analysis because children have the greatest stake in the resulting impact of LSMT and end-of-life care on their well-being and physical person. Melinda Derish and Kathleen van Heuvel argue that due to the “high physical and psychological burdens [of LSMT] … the potential benefit can only be measured in relation to the patient’s personal values,” thus demanding a clear space for the voice of the child.9

Thus, the remainder of this paper compares the presence of rights use and language in the policy and literature surrounding end-of-life decision making in the United Kingdom, which has ratified the CRC, and in the United States, which has not. Both of these nations are reliant on biomedicine as the primary source of health care available to citizens and designate the age of legal adulthood as 18. The following sections examine state policy and publications from ethics and medical scholars in order to depict the institutional landscapes in which the rights of the child are manifest, exploring if and how these rights are evoked and accessed.

Country study: United Kingdom

The United Kingdom ratified the CRC in 1991 and subsequently adopted it as a foundation for policies regulating national health care services available to children, as evidenced by a National Service Framework released by the Department of Health in 2004. This document outlines the core standards and goals of health care practice for children and mothers and explicitly states that “[c]hildren have a right to be involved in decisions about their care,” with a citation to article 12 of the CRC.10 Therefore, in the United Kingdom, the responsibility to fulfill the rights of the child rests with the highest level of the health system, setting a national expectation that the child have a clear and worthy voice in moments of medical decision making.

The use of rights language in national policy implies a reciprocal partnership between children and the health care system. In the United Kingdom, this partnership is realized through the implementation of rights-based policies sourced from the voices and views of children in local communities. As Gerison Landsdown describes, towns and neighborhoods around the country consulted with groups of local children on health issues of concern prior to instituting community health interventions. For example, an East London development program interviewed four- and five-year-olds to identify social factors impeding their enjoyment of health and registered the dangers posed by local violence, cockroaches, and drugs.11 Another study from Priscilla Alderson et al. investigates how children with chronic diseases share in managing their own care and concludes that children have the capacity to form an informed partnership with health care professionals.12 Importantly, these works emphasize that children as young as four have the ability to contribute, at least in part, to judgments about their own best interests with regard to the health of their bodies and communities.

How does this biomedical culture founded on the rights of the child influence contexts of life-saving and sustaining medical treatment?The Framework for Practice in Withdrawing or Withholding Life Saving Treatment in Children, a standard reference published by the Royal College of Pediatrics and Child Health, reiterates the commitment to the tenets of the CRC seen in other national-level health publications, noting that “the purpose of this document is to … [uphold] the rights of the child.”13 Moreover, the authors confirm that English law has “gone further [than the CRC] in recognizing the rights of competent children to make decisions in certain circumstances.”14 Karen Street et al., in a study exploring the factors involved in the decision to withhold or withdraw life-saving treatment for children, argue that this statement holds true in practice. They found that when children contributed to those discussions, their input was valued equally with that of the primary physician and the children’s parents, and their wishes were deemed most important to the final outcome.15 Recognition of individual autonomy in emotionally and morally charged moments is crucial to the realization of rights, a phenomenon clearly appreciated when such autonomy is denied. In the case of a 14-year-old who died without being told of his condition despite evidence that he was able to understand its gravity, T. Vince and A. Petros argue that by denying the boy’s right to choices and opinions around his death, his autonomy and ultimately personhood were silenced.16 Such a paternalistic decision compromises the state’s obligation to recognize the rights of the child and violates the best interests of the child-patient. Moreover, such action can undermine the rights system as a whole, for, as scholar Roger Worthington argues, “rights are an illusion if the rights bearer does not know they exist.”17

In the United Kingdom, where the CRC is the foundation for implemented policy, immense weight is granted to the rights of the child. Adults, including representatives of the state and parents, have the obligation to not only recognize these rights but also protect them.12 Such a responsibility elevates children from passive patients to active stakeholders who proactively engage in partnerships to create medical futures shaped by their own desires and autonomy.

Country study: United States

The United States is the only member state of the United Nations that has not ratified the CRC. Its primary source of opposition stems from partisan concerns around sovereignty infringement, a legislative stagnancy severely criticized by international bodies. Therefore, since US health care policies are not grounded in human rights approaches, it is necessary to analyze if and how the voice of children can contribute to their own care, as well as the theory systems that underlie that capability. This is critical because social infrastructures derived from human rights contain an established legal mechanism to ensure state obligations to respect, protect, and fulfill rights; these avenues are active in the United Kingdom, where judicial rulings cite the CRC and other human rights treaties to substantiate legal claims of violations.18

Fundamental differences between the health systems and structures of the United States and United Kingdom complicate a direct comparison, but an assessment of published policy and end-of-life care literature indicates a pervasive use of rights language and development theory in US pediatric medicine. TheHealth Equity and Children’s Rights Policy Statement, released by the American Association of Pediatrics in 2010, contains explicit references to the CRC and lauds its value as a foundational document for future policy implementation: “[the CRC] and the integration of its principles into the practice of pediatrics provide powerful tools and strategies to respond to the root causes of contemporary child health morbidities and disparities.”19 The policy suggests a pronounced disagreement between the American Association of Pediatrics and the US government, and it clearly links the CRC with the work of pediatric medicine, noting that “the promotion and protection of children’s rights can be used to guide the work of pediatricians as clinicians and child advocates.”20 These mentions are subtle but telling. They indicate the association’s desire to claim, on behalf of children, the rights outlined in the CRC that apply in medical contexts.

This position subtly contrasts with the association’s published teaching curricula on daily practice and priorities. For example, the Bioethics Resident Curriculum on Autonomy, Beneficence, and Rights uses explicit rights language but grounds it in bioethics theory rather than human rights.21 The authors name children as rights holders and claimants in medical settings, repeating the CRC nearly verbatim when describing children’s rights to life, to be informed, and “to participate in decision-making as appropriate for age and mental state.”22 They also describe autonomy and self-determination in medical decision making but again localize these concepts within the field of medical ethics rather than human rights. Considering a medical ethics (versus a human rights) approach to medical decision making raises necessary questions about a child’s stakeholdership and agency in the American health care system. According to this teaching curriculum, physicians and parents (in other words, adults) grant the child-patient rights, and “competent patients are generally accorded the right to autonomy.”23 Rather than held from birth and bestowed by virtue of a common humanity, rights become an object to be awarded when patients meet certain moral and cognitive criteria of competency and patient-hood.

The emotionally charged setting of end-of-life decision making is deeply affected by such a framework. First, there is no guarantee that the wishes of the child will be registered, and second, children become dependent on their caregivers to respect those wishes. A study by Maureen Lyon et al. examined how chronically ill adolescents faced decisions of end-of-life care, specifically studying themes of inclusion and respect for autonomy.24 All participants explicitly wished to be included in discussions of care options, either with their families or with health care providers. The majority believed that their choices would be respected, though only half of this majority thought they would be allowed to change their mind. The personhood of a patient manifests itself in the patient’s conceptualization of his or her own existence and possible futures; therefore, personhood grants autonomy and empowers choice making.25 In this study from Lyon et al., we see patient autonomy and personhood externalized to physicians who have the power to judge the validity of the child’s input. Nursing scholar Kathryn Hickey further clarifies this space by characterizing it as a “limbo … between the dependency of childhood and the autonomy of adulthood.”26 In the American medical system, autonomy and personhood are intrinsically dependent on age. Such an ethical understanding may not compromise care or cause harm, but it does reveal the precarious position of children. They are not validated as stakeholders in their own care, and adolescents, between child and adulthood, are placed in a liminal space. Morally, physicians and parents should not deny the voices of these patients in end-of-life decisions about their own treatment and bodies; however, no named obligation exists to respect those views. Legally, these patients have not crossed the age threshold (18) necessary to be deemed medically independent or fully competent.

Proposed changes to standard pediatric practice from anthropologist Myra Bluebond-Langer and legal scholars Melinda Derish and Kathleen van Heuvel reveal the current precariousness of children’s autonomy in contributions to medical decision making. Bluebond-Langer advocates a medically situated form of political shuttle theory in which the physician engages in an evolving discussion of care options with the parents and child-patient that is supported by an earlier conversation establishing what information parents and health care providers wish to share with the child.27 This strategy is centralized around “the recommendation of recognition and respect for the reality of children’s relation to their parents and other adults” but ensures that the child’s “inability to control the process has not kept [them] from being an active player.”28 By allowing for a careful recognition of children’s personhood, this approach ensures that children are meaningfully included in the decision-making process. It diverges from the age-dependent understandings of competence and validates the personal experience of the child-patient.

Derish and van Heuvel frame a similar argument for the recognition of pediatric autonomy though the designation of “mature minors.” They demand that young people under 18 who possesses the maturity to understand the full implications of end-of-life treatment should have the right to independently accept or deny life-sustaining medical care.29 Such a standard requires cooperation between the health and legal systems. Health practitioners would have the responsibility to provide complete information and encourage informed consent, and legal partners would contribute the training and mechanism to defend the patient’s rights. This strategy still stems from ethical and moral foundations, but it explicitly recognizes an intrinsic right of minors to decide the course of their care and works to defend that right.

In the United States, the position of the child in the decision-making process when choosing options for end-of-life care is defined in the thematic language of rights. Practitioners and scholars invoke a rhetoric of autonomy, self-determination, maturity, and personhood. However, unlike rights rooted in human rights treaties, the rights founded in American medical ethics do not have clearly defined legal and institutional mechanisms for rights protection. For example, in the state of New York, no formal process exists to designate a child-patient a mature minor with a stakeholder position. Rather, rights-holder status is bestowed at the discretion of the child’s primary physician, who typically represents the state’s understandings of best interest.30 Standards of care and practice in both the medical and legal fields differ from state to state, with the ultimate determination of competency and autonomy made on an individual basis within the courts.31 This mechanism conflicts with the presumed universality inherent in human rights treatises. As a result, though rights language is used in official US medical policy, it lacks the implied consistent support infrastructure of a right to health approach.

Conclusion

Analyzing policies and published research on decisions regarding life-sustaining medical care for minors in the United Kingdom and the United States reveals that both nations recognize the right of mature and competent children to be involved in determining the course of their treatment. However, the foundational theories underlying these named rights do not impart identical decision-making power. Through these examples, we see that rights evoked through human rights approaches versus those evoked through medical ethics manifest themselves very differently. Michael Peel summarizes these differences: (1) human rights compel state-level action, while medical ethics are based on person-to-person relationships, and (2) rights are independent of empathy, while medical ethics are historically based on benevolence.32

In the United Kingdom, children are recognized as reciprocal partners in their own care, a validation of autonomy and personhood substantiated by legal mechanisms of human rights protection. Further research is necessary to determine if this is a consistent and effective method of protecting personhood. In contrast, the US medical system requires children to exhibit moral and cognitive criteria to prove competency. Only then is autonomy granted to the patient and their contribution recognized, though even then it may not be valued. This paper does not attempt to validate one rights system over another; rather, it examines how the health rights of the child change in practice when evoked through differing—and occasionally conflicting—frameworks. Ultimately, even when rights language contains similar themes of autonomy, self-determination, maturity, and personhood, the social and systemic context of practice still influences how these rights are accessed and employed.

References

  1. Convention on the Rights of the Child, G.A. Res. 44/25 (1989).
  2. Ibid., Preamble.
  3. Ibid., Art. 24.
  4. Ibid., Art. 12.
  5. N. G. Rodriguez, “Translating “best interest”: Child welfare decisions at the US-México border,” PoLAR: Political and Legal Anthropology Review 39/S1 (2016), pp. 154–168.
  6. G. Landsdown, The evolving capacities of the child (Florence: UNICEF Innocenti Research Centre, 2005).
  7. Ibid., p. 60.
  8. J. S. Jerome, A right to health: Medicine, marginality, and health care reform in northeastern Brazil (Austin, TX: University of Texas, 2015), p. 8.
  9. M. T. Derish and K. van Heuvel, “Mature minors should have the right to refuse life-sustaining medical treatment,”  Journal of Law, Medicine and Ethics 28/2 (2000), p. 110.
  10. National Health Service Wales, Core document: National Service Framework for Children, Young People and Maternity Services in Wales (Wales: National Health Service, 2004), p. 92.
  11. G. Landsdown, “Current topic: Implementing children’s rights and health,” Archives of Disease in Childhood 83/4 (2000), pp. 286–288.
  12. P. Alderson, K. Sutcliffe, and K. Curtis, “Children as partners with adults in their medical care,” Archives of Disease in Childhood 91/4 (2006), pp. 300303.
  13. Royal College of Paediatrics and Child Health, Witholding or withdrawing life sustaining treatment in children: A framework for practice, 2nd ed. (London: Royal College of Paediatrics and Child Health, 2004), p. 12.
  14. Ibid., p. 21.
  15. K. Street, R. Ashcroft, J. Henderson, and A. Campbell, “The decision making process regarding the withdrawal or withholding of potential life-saving treatments in a children’s hospital,” Journal of Medical Ethics 26 (2000), pp. 346–352.
  16. T. Vince and A. Petros, “Should children’s autonomy be respected by telling them of their imminent death?” Journal of Medical Ethics 32/1 (2006), pp. 21–23.
  17. R. Worthington, “Standards of healthcare and respecting children’s rights,” Journal of the Royal Society of Medicine 99/4 (2006), p. 209.
  18. SG and others, R (on the application of) v. Secretary of State for Work and Pensions (2014) U.K.S.C. 16; R (AA) v. Secretary of State for the Home Department (2016) E.W.H.C. 1453.
  19. Council on Community Pediatrics and Committee on Native American Child Health, “Policy statement: Health equity and children’s rights,” Pediatrics 125/4 (2010), p. 840.
  20. Ibid., p. 841.
  21. C. Cummings and M. Mercurio, “Session 10. Autonomy, beneficence, and the rights of parents and children: Exploring the application of ethical principles in pediatrics,” American Academy of Pediatrics bioethics resident curriculum: Case-based teaching guides (2011), pp. 6369.
  22. Ibid., p. 65.
  23. Ibid., p. 66.
  24. M. E. Lyon, M. McCabe, K. Patel, and L. D’Angelo, “What do adolescents want? An exploratory study regarding end-of-life decision-making,” Journal of Adolescent Health 35/6 (2004), pp. 529e.1–529e.2.
  25. Vince and Petros (see note 16).
  26. K. Hickey, “Minors’ rights in medical decision making,” JONA’s Healthcare Law, Ethics, and Regulation 9/3 (2007), p. 101.
  27. M. Bluebond-Langner, J. B. Belasco, and M. D. Wander, “‘I want to live, until I don’t want to live anymore’: Involving children with life-threatening and life-shortening illnesses in decision making about care and treatment,” Nursing Clinics of North America 45/3 (2010), pp. 329343.
  28. Ibid., pp. 337, 339.
  29. Derish and van Heuvel (see note 9).
  30. J. Feierman, D. Lieberman, A. Schissel, R. Diller, et al., Teenagers, health care, and the law: A guide to the law on minors’ rights in New York State (New York: New York Civil Liberties Union, 2002).
  31. Ibid.
  32. M. Peel, “Human rights and medical ethics,” Journal of the Royal Society of Medicine 98/4 (2005), pp. 171–173.
 
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