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chapter 22 Assessing the Appropriate Role for Children in Health Decisions
Nuala P. Kenny, Linda E. Skinner
To ensure that the best decisions are made for children and adolescents, these decisions should be made jointly by members of the health care team, the child or adolescent’s parents and, sometimes, the child or adolescent. Children and adolescents should be involved in decision-making to an increasing degree as they develop, until they are capable of making their own decisions about treatment.
BIOETHICS COMMITTEE, CANADIAN PEDIATRIC SOCIETY
Medical decision-making in pediatric practice is ideally a collaborative process involving parents, the pediatrician, other members of the health care team and, when appropriate, the children themselves. Pediatricians have a long tradition of helping parents make health decisions for their children. As these decisions become increasingly complex, practitioners require great skill in communicating medical prognosis as well as the risks and potential benefits of different interventions. The role of parents as primary decision-makers for infants and young children is clear. Caring and responsible parents are entrusted by society with the authority to give permission for health care decisions made in the best interests of their children.
Pediatricians owe ethical and legal duties to their child and adolescent patients, independent of parental authority. Children have been traditionally excluded from medical decision-making because they were considered incompetent or nonautonomous. However, as the ethical analysis of the respectful involvement of children in medical decisions has evolved, it was recognized that children from infants to teens have radically different capacities for involvement in decisions about their life and health, and we lack clear standards by which to judge the appropriate role for this child. Just as we have increased expectations for the ethical involvement of competent adults in health decisions, there are ethical demands for improving the respectful involvement of children and adolescents. Pediatricians are expected to understand the changing ethical concerns, to be aware of the developmental science underlying growing autonomy and decisional competence, to possess the skills necessary to assess a child’s capacities, and to help parents determine the appropriate role for the child in medical decisions. As children mature, their best interests increasingly include their involvement in decisions. Assessing the role of the child in this decision is important because children are in a continuous process of decisional maturation.
The doctor-patient relationship in pediatrics has always been with both the children and their parents or caregivers. This focus on the child within the family is a particular strength of the specialty. Our focus on determining the appropriate involvement of the child does not mean setting up an adversarial relationship between parents and child. This determination is not about scoring points to determine who is the ultimate decision-maker. Rather, the aim is to recognize the balance between parents and maturing children. Decisional competence is a “necessary but not sufficient” condition on which to base respectful involvement.
The context in which health decisions are made is extremely important in determining the appropriate role for a child. In primary care settings, the pediatrician’s knowledge of the child and family is an invaluable resource in determining the best interests of the child and in helping parents determine the child’s appropriate role.
In hospital-based and specialty care, a number of other contextual features influence the involvement of the child. Acute illness and injury often require rapid decisions about diagnosis and treatment. There may not be sufficient time to assess the appropriate role for the child in such cases, so parental judgment is relied on. Children should, however, be involved as much as is reasonable. Context and experience matter. Children who experience chronic illness have knowledge and experience of health care decisions beyond their years. Their active involvement is essential for care. The clini- cian often has an established relationship with such a child and the family, enabling him or her to intimately understand both the child and the family and to identify potential or emerging conflicts in parent-child communications.
A life-threatening illness in children and adolescents poses particular challenges. Some parents refuse to have their children involved in any way in end-of-life decisions. Some even explicitly forbid the pediatrician to speak honestly to their child or adolescent, presenting serious challenges to crucial communication and trust. In-depth discussion of the ethical dilemmas created by such situations are beyond the scope of this chapter. Here we focus on the skills needed by practitioners to assess the child’s capacities and to assist parents and children in their medical decisions. Involvement in medical research is even more complex and will not be addressed here.
Parents are primarily responsible for protecting and promoting their children’s interests. Children are raised in an increasingly complex set of parental or caregiver contexts, which may consist of a two-parent, single-parent, or blended family, foster care, children of same-sex couples, or a homeless family. These familial and social factors shape the substance and context of decisions. Parents who are not neglectful, exploitive, or abusive of their children are generally granted wide discretion in making decisions for them. This discretion is granted for many reasons, some of which include the following:
Formally, parents serve as surrogate decision-makers for their children. There are two kinds of third party decision-makers: proxies and surrogates. A proxy is appointed by a competent person to act for them if they become incompetent, and the standard to be used is that of substituted judgment of the person for whom they have proxy. Proxies are to decide as best as they can what the person would have wanted.
Parents are surrogate decision-makers. Surrogates are, by convention or law, given authority to decide for those who have not yet or never manifested their values and preferences. The standard used by surrogates is that of the “best interest” of the person for whom they decide. Clearly, “best interest” is complex and often contested, as demonstrated in different understandings of a patient’s best interest, judged from the medical perspective and that of parents or guardians. Parents do take into account the unique characteristics of their child—age, illness, personality, and maturation in determination of best interest, but they do not have the same clear direction that proxies have.
Moreover, parents guide their children to decisional maturity in many and varied ways. The differences are related to the personality of the child and to the family’s religious, ethnic, and cultural characteristics. Some parents are extremely protective of their children and limit all aspects of the child’s involvement in decision-making, including the disclosure of information. Others actively promote involvement of the child in decision-making from an early age.
A child’s need-to-know medical information, especially about prognosis, can be a source of real conflict for parents, the pediatrician, and other members of the health care team. Even for a child who demonstrates decisional maturity, parents may have good reasons to limit the child’s present-day autonomy in favor of lifetime goals because children’s decisions are based on limited experience. Finally, family interests and goals are important, too. Physicians provide for a child’s medical needs only. The parents provide for all of the child’s needs and assume the consequences of medical decisions made for their children. Parents may need to balance their child’s best interest with the family’s best interest.
Respect for the autonomy of patients is a fundamental principle of contemporary ethical practice. Informed choice is the main tool for respecting autonomy. The ethical requirements for informed choice include:
Respect for child and adolescent patients includes respect for their developing autonomy, their dependence on parents and family, and their informational and emotional needs. Competence to make an autonomous, informed choice is content-specific and decision-specific. In general, the higher the levels of risk and harm, the greater the competence required. Even when children have not yet developed decisional maturity, respecting their needs for information privacy, intimacy, confidentiality, truthfulness, and trust is essential. The pediatrician’s task is to balance respectful involvement of the child with parental authority and judgment. The real question is, “What is the appropriate role for the child in this health care decision?”
The pediatrician must assess the following issues:
Professional guidelines have been developed to assist pediatricians with this assessment. The American Academy of Pediatrics (AAP) has identified the following three categories of children:
In attempting to provide this guidance, the AAP developed the concepts of assent and dissent to recognize the developing capacity of children in the second category. However, these concepts and categories are confusing and contradictory in actual usage. When the child’s assent is in agreement with the parental decision, we have no problem. When a child dissents, we are unclear as to the moral authority of that dissent because it is not yet a competent refusal.
The following general categories have been further refined to identify the broader needs and capacities of children in four categories:
The role of parents for children in category 1 is clear. Parents are surrogate decisions-makers for their infants and young children. The pediatrician’s role for such children is the traditional one of providing care for the child and information and support for the parental decision.
For children in categories 2 and 3, the role of a particular child in a given health decision must be determined. The pediatrician brings medical and developmental expertise to an assessment of such a child’s capacity and need to participate. We outline here some specific assessment techniques that the pediatrician or other members of the health care team can use to more clearly identify the child’s role. It is important to recognize the need for information and involvement, even for the child who has not yet developed decisional maturity.
The role of adolescents (category 4) is complex. Some of the techniques identified for the assessment of younger children are useful for young adolescents. We address specific considerations regarding more mature adolescents in a special section of the chapter.
Although there is an expectation for attention to the respectful involvement of children and adolescents in medical decisions, “[T]here has been a significant gap between what has been documented in scientific research about children’s competence and recommendations regarding policies for children’s involvement in the consent process.” More research is clearly needed in this area. In addition, there is concern that bioethics is dominated by “outdated Piagetian age-stage theories of child development that end to emphasize children’s ignorance, inexperience, and inability to make truly informed autonomous decisions…” Newer qualitative social research, especially with children with chronic illness and disability, reveals higher levels of knowledge and competence than given credit for through traditional developmental psychological testing. More work is needed here.
Within the constraints of empirical evidence and differing approaches to determining the child’s role in medical decisions, pediatricians have some fundamental duties. To understand the respectful involvement of a child or adolescent in decision-making, the pediatrician must assesses the child’s capacities for the following:
Competence in decision-making requires a capacity for understanding and expressing language. Assessing the child’s ability to understand basic concepts of health, illness, and treatment is essential for determining the proper role of the child in medical decisions. Although the development of verbal abilities is an early maturational task, everyone who listens to children knows that they can use language in ways that have meanings that differ from how adults understand the words.
Children’s language and cognitive development must be sufficient to understand the medical information given to them. Understanding the meaning of certain concepts essential for decision-making, such as risk, pain, consequences, and death, requires certain life experiences. Caregivers can have legitimate differences of opinion about what the child truly understands about such concepts.
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