H is a bright, loving, 11-year-old child who has been treated for osteosarcoma. Her left arm has been amputated and she was given a course of chemotherapy. She has been cancer free for 18 months and is doing well in school. She is self-conscious about her prosthesis and sad because she had to give away her cat, Snowy, to decrease her risk of infection. Recent tests indicate that the cancer has recurred and metastasized to her lungs. Her family is devastated by this news but do not want to give up hope. However, even with aggressive treatment, H’s chances for remission are less than 20%. H adamantly refuses further treatment. In the first round of treatment, she had initially acquiesced to the treatment but ultimately struggled violently when it was administered. She distrusts her healthcare providers and is angry with them and her parents. She protests, “You already made me give up Snowy and my arm. What more do you want?" Her parents insist that treatment must continue. At the request of her physician, a psychologist and psychiatrist conduct a capacity assessment. They agree that H is incapable of making treatment decisions; her understanding of death is immature and her anxiety level very high. Nursing staff are reluctant to impose treatment. In the past, H’s struggling and the need to restrain her caused them serious concern.
Respectful involvement of children in medical decisions requires respect for parental authority and family context as well as careful attention to the communicative and developing decisional needs and abilities of the child.
Children have traditionally been excluded from medical decision making. Inclusion was seen to be dependent upon autonomy (the capacity for self-determination) and children were considered non-autonomous. Children were seen as needing substitute decision makers, and parents were generally turned to as substitutes with the right and responsibility to make medical decisions for their children.
However, ethical analysis of the involvement of children in medical decision making has evolved and at least two significant changes must be noted. Firstly, it was recognized that children from infants to teens have dramatically differing levels of capacity for decision making. Three general categories of children were described: those lacking decisional capacity, those with developing decisional capacity, and those with developed decisional capacity (American Academy of Pediatrics, 1995). The focus of respectful involvement of children in medical decisions became fixed on decisional maturity. Differing levels of inclusion in decision making, relating to these different categories of decisional capacity, came to be seen as necessary.
The North American standard for clinical decision making, for instance, evolved into parental consent/permission for the first category, the child’s consent for the third category, and parental consent/permission and child assent for the second category (Canadian Paediatric Society and Bioethics Committee, 2004). It was claimed that assent recognizes the developing capacity of children in this second category. Assent refers to an agreement with a decision or course of action as distinct from consent, which refers to an informed and voluntary choice with respect to a decision or course of action. The capacity to assent assumes a lower standard for each of the elements of informed choice (freedom, information, and decision-making capacity) than the capacity to consent. Assent was said to demonstrate respect for the child’s developing autonomy, and parental consent/permission was said to protect the child from assuming unreasonable risks (Rossi et al., 2003).
However, a second change in thinking occurred as assent has presented both practical and theoretical difficulties. Bulford (1997) has identified the lack of standards by which to judge competency and the ad hoc nature of assessment of the child’s capacity for participation in the decision. Kenny and Skinner (2003) have noted that identifying the appropriate role for the child is complex. Among other things, it requires an understanding of the neurodevelopmental capacities of children that are necessary for decision making. On a substantive level, the role of assent has become contested, as demonstrated in a special issue of the American Journal of Bioethics in 2003. Serious questions have been raised. Is assent required from the child? Is dissent morally binding? If so, in what way is dissent different from competent refusal? Is respectful and meaningful involvement of the child about more than decisional autonomy?
If children are to be treated with respect in medical decisions, it is imperative to have clarity regarding children’s roles and to be more attentive to the developing capacities of child participants. Simpson (2003) and Baylis et al. (1999) have suggested that at least four categories of children can be described based on an understanding of the various developing capacities of the child: (i) children with no communication (neonates and young children); (ii) children with some communication but no decisional maturity (younger school-aged children); (iii) children with some communication and developing decisional authority (older school-aged children); and (iv) children with decisional maturity (i.e., equivalent to adult capacity for decisional maturity and mature and emancipated minors).
Building on this, it is argued that the appropriate involvement of the child depends upon an assessment of the child’s decision-making capacity, what the child can understand, what the child can benefit from being told (even if not capable of making a decision), what the child wants to know, and what the child needs to know in order to participate appropriately (Baylis et al. 1999; Kenny and Skinner 2003).
For example, there is no role in decision making or communication (other than comforting) for an infant. A mature minor, at the other extreme, must be told everything that a competent adult would be told and has the moral authority to make the decision. A child with no decisional capacity, but good language comprehension, should be told what is going to happen to him or her. For instance, it can be morally necessary to share information even where the child has no decisional authority and it can be morally required to ask a child’s opinion about various options even if the child may not yet have developed decisional authority. In other words, information sharing should be distinguished from ascribing decisional authority, and the objectives of sharing information and seeking opinions from the child can vary according to the capacities of the child.
Respectful involvement of the child, therefore, involves attention to the communicative as well as decisional needs and abilities of the child. Further, it requires careful and respectful attention to the family context of the child. It has been argued that a family-centered ethic is the best model for understanding the interdependent relationships that are at play in the clinical context. A family-centered approach considers the effects of a decision on all family members, their responsibilities toward one another, and the burdens and benefits of a decision for each member, while acknowledging the special vulnerability of the paediatric patient (Nelson and Nelson 1995; Committee on Pediatric Emergency Medicine, AAP Policy, and American Academy of Pediatrics, 2003). This approach presents special challenges for the healthcare team when there is disagreement between parent(s) and a child. Such a situation raises profound questions about the nature of the physician–patient relationship in pediatric practice. In the care of competent adults, the physician’s primary relationship is with the patient. The patient’s family may be involved in decision making (i.e., may participate in discussions of diagnosis, prognosis, and treatment options), but it is the patient who defines the bounds of such involvement and it is the patient who has the authority to make any and all decisions. The care of children, by comparison, involves a family-centered relationship in which the child, the parents, and the physician all have a necessary involvement. When there is disagreement between parent and child, the physician may experience some moral discomfort, feeling caught somewhat between the child and parent. The goal, however, must be to ensure the pursuit of the child’s best interests and the respectful involvement of the child in the decision-making process (in a fashion appropriate to his or her capacities).
The family-centered approach can also present special challenges for the healthcare team when there is disagreement between the parent(s) and the team with respect to what is in the child’s best interests. The assumption that parents best understand what is in the best interest of their child is usually sound. However, situations can arise in which the parents’ distress prevents them from understanding or appropriately weighting their child’s concerns and wishes. Simply complying with the parents’ wishes in such cases is inadequate. Furthermore, the family-centered approach must not be taken to allow family members’ interests to trump the child’s interests. Rather, it must be seen as recognizing the fact that children are embedded in their families and the interests of the child can be seen as bound up with the interests of other family members. The child’s interests must always be the basis for a decision to be followed by the healthcare team. This approach does not discount the parents’ concerns and authority but it does recognize the child (albeit as a member of a family) as the particular patient to whom the healthcare team has a primary duty of care.
Apart from exceptional circumstances (e.g., emergency), medical treatment must only be provided or withheld on the basis of a legally valid consent or refusal. To be legally valid, a consent or refusal of medical treatment must be free and informed. It must also be made by a person with appropriate authority who is deemed capable of making the treatment decision, that is, capable of understanding the nature and consequences of the recommended treatment, alternative treatments, and no treatment. If the patient is capable, then the patient has decisional authority. If the patient is a child, parents or legal guardians generally have the legal authority to act as substitute decision makers.
A child’s substitute decision maker is obliged to make treatment decisions in the best interests of the child. Healthcare providers who believe that a substitute’s decisions are not in the child’s best interests should turn to child welfare authorities. Through child welfare legislation, the courts can ensure the appointment of a different substitute decision maker if they believe the current substitute to be acting not in accordance with the child’s best interests (legislation usually provides guidance on the content of “best interests”). Courts also have the power to authorize or refuse to authorize treatment if they believe such action to be in the child’s best interests. For example, courts have deemed children to be in need of protection and placed them under the care and control of child and family services and courts have themselves ordered blood transfusions in cases in which parents who are Jehovah’s Witnesses refuse life-saving transfusions for their children.
Professional bodies with obligations and duties to children have formally recognized this new and emerging attention to the respectful involvement of children and youth in medical decisions. For example, the Canadian Paediatric Society policy on treatment decisions regarding infants, children, and adolescents states that “to ensure that the best decisions are made for children and adolescents, these decisions should be made jointly by members of the healthcare team, the parents of the child or adolescent, 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” (Canadian Paediatric Society and Bioethics Committee, 2004, p. 99). The American Academy of Pediatrics (1995, p. 314) statement identifies the joint responsibility of physicians and parents to make decisions for very young patients in their best interest and states that “[p]arents and physicians should not exclude children and adolescents from decision-making without persuasive reasons.”
There is a body of empirical research providing some information on the competence of children for assent and consent (Abramovitch et al., 1995). Miller et al. (2004) have reviewed the empirical literature focusing on the voluntariness and competence of children for medical decisions. This review identified several fundamental dilemmas underlying current approaches to children’s consent, demonstrating the differences between a legal (all-or-none) and a psychological (developmental, context dependent, and interactional) perspective; differences between the clinical and research settings; and differences in studies focusing on who makes the decision in contrast to those focusing on which decision is in the child’s best interest. They conclude that more research is needed in this area, with particular attention to be paid to the differences between the respectful involvement of the child in clinical and research decisions, examination of the non-cognitive aspects of children’s competence, and the importance of context in the development of decisional capacity.
Healthcare professionals working with children should be sensitive to the particular capacities of each child. Children are constantly developing with respect to their physical, intellectual, emotional, and personal maturity. Although developmental milestones give us a general sense of capacities, there is no bright-line of a particular age that will indicate ability to participate in independent decision making.
Where it is determined that it would not harm the child to be involved in the parental decision making and where there is sufficient language capacity to engage the child, healthcare professionals should discuss the treatment options with the child. Healthcare professionals should seek the child’s opinion about the potential benefits and harms of the various options. Then, when assessing what action is in the best interests of the child, they should include a consideration of:
Once the substitute decision maker has made the decision (likely the parents), the healthcare professionals should carefully explain to the child, at an appropriate level and with the family’s assistance, what is going to happen to him or her.
For H, resuming aggressive treatment will have a serious negative effect on her quality of life. The chances of remission are small, yet a decision to discontinue treatment will likely result in her death. Because death is irreversible, and decisions with serious consequences require a high level of competence in decision making, the capacity required for this treatment decision is very high. It has been determined that H does not have this decisional capacity and that her parents are her substitute decision makers.
Nevertheless, H is included in discussions about the treatment options and her reasons for not wanting treatment are explored. Members of the team work hard to re-establish trust. Discussions address the hopes and fears of H and her parents, the parents’ understanding of the possibility of cure, the meaning for them of the statistics provided by the physicians, as well as H’s role in the decision-making process and her access to information. Members of the team include physicians, nurses, a child psychologist, a psychiatrist, a member of the clergy, a bioethicist, a social worker, and a palliative care specialist.
Discussions focus on reaching a common understanding about the goals of treatment for H. Her physician helps her to express her feelings and concerns about the likely effects of continued treatment. Consideration is given to the effects on her physical well-being, quality of life, self-esteem, and dignity of imposing treatment against her wishes. Spiritual and psychological support for H and her family is acknowledged to be an essential component of the treatment plan. Opportunities are provided for H and her family to speak to others who have had similar experiences, and staff are given the opportunity to voice their concerns.
Ultimately, a decision is made by H’s parents to refuse chemotherapy and the goal of treatment shifts from “cure” to “care.” H’s caregivers assure her and her family that they are not “giving up” but are directing their efforts toward H’s physical comfort and her spiritual and psychological needs. H returns home, supported by a community palliative care program, and is allowed to have a new kitten. She dies peacefully.
The healthcare team met after H’s death to review her care. They acknowledged that some parents might have made a different decision and discussed what their plan would be should this arise in future. This would include discussions among team members and with the parents to seek consensus about the potential for benefit to the patient, ongoing communication with the parents to ensure mutual understanding of the realistic goals of treatment, and psychosocial and emotional support of the patient during his or her course of treatment. It was acknowledged that in a situation such as H’s, her parents’ wishes for treatment would take precedence over her dissent. The team did not agree what their approach would be in situations where treatment would not be predicted to have a chance of remission of less than 20%. Some argued that they should refuse to provide treatment in such circumstances. Others argued that, even then, the parents’ decision should be respected. It was agreed that should the situation arise they would invite the hospital ethics team to assist with decision making and conflict resolution.
An earlier version of this chapter has appeared: Harrison, C., Kenny, N. P., Sidarous, M., and Rowell, M. (1997). Involving children in medical decisions. CMAJ 156: 825–8.