1. Informed consent is the process by which adult patients’ autonomy and agency are honored in medicine decision making.
2. In pediatrics, parents are the surrogate decision makers for the children, and the American Academy of Pediatrics (AAP) recommends that the informed consent process can be called informed permission.
3. In degree that children are involved in decisions about their own medical care depends upon their age and intellectual capacity.
4. Confidentiality with regard to adolescent’s health information need not be maintained in cases where the adolescent is at risk for serious harm.
THE INFORMED CONSENT PROCESS FOR PEDIATRIC PATIENTS
The core of medical ethics is self-determination. Physicians facilitate self-determination by honoring the process of informed consent, by explaining to the patient the risks, benefits, and alternatives to the procedure, and by obtaining from the patient an active, voluntary, informed authorization to perform a specific plan (1) (Table 5.1). For the purposes of this chapter, “patient” or “parent” includes all authorized decision makers interacting in their appropriate roles.
In pediatrics, although parents traditionally act as the surrogate decision makers for their children, surrogate consent does not fulfill the spirit of informed consent, which requires the patient to authorize the treatment. To acknowledge this distinction, the AAP has suggested that the proper role for the surrogate decision maker is to provide informed permission, which has the same elements as informed consent but acknowledges that the parent is authorizing treatment for his or her child (2).
For pediatric patients, the “rule of sevens” provides a useful way to approach their various decision-making capacities. The “rule of sevens” views children aged 7 and younger as incapable of decision-making capacity, children between the ages of 8 and 14 as unlikely to have decision-making capacity, and those older than 14 as presumed to have decision-making capacity.
TABLE 5.1 Elements of consent and assent as defined by the AAP Committee on Bioethics (2)
1. Adequate provision of information including the nature of the ailment or condition, the nature of the proposed diagnostic steps or treatment, and the probability of their success; the existence and nature of the risks involved; and the existence, potential benefits, and risks of recommended alternative treatments (including the choice of no treatment) |
2. Assessment of the patient’s understanding of the above information |
3. Assessment, if only tacit, of the capacity of the patient or surrogate to make the necessary decisions |
4. Assurance, insofar as it is possible, that the patient has the freedom to choose among the medial alternatives without coercion or manipulation |
|
■ Assent |
1. Helping the patient achieve a developmentally appropriate awareness of the nature of his or her condition |
2. Telling the patient what he or she can expect with tests and treatment |
3. Making a clinical assessment of the patient’s understanding of the situation and the factors influencing how he or she is responding (including whether there is inappropriate pressure to accept testing or therapy) |
4. Soliciting an expression of the patient’s willingness to accept the proposed care |
CLINICAL PEARLS The parents’ concept of best interest, the guide used in decision making regarding health care of children too young to make their own decisions, may differ significantly from that of the caregivers.
Although a court order allowing indicated blood transfusions for children of Jehovah’s Witnesses parents in emergencies, the anesthesiologist need not wait for this legal document.
INFANTS, TODDLERS, AND YOUNGER CHILDREN
Parents and physicians use the concept of best interests to guide decision making about health care for children aged 7 and younger because they have difficulty participating in decision-making processes. The best interests standard requires the decision maker to select the objectively “best” care. Capable and present parents are generally the appropriate decision makers for their children. This approach honors society’s respect for the concept of family and, presuming that children will incorporate some of the parents’ values as they mature, provides a reasonable approximation of the future values of the child (3).
In our multicultural society, parents appropriately have extensive leeway in determining what is in a child’s best interests. Determining when parental preference constitutes unacceptable decision making requires recognizing the boundaries of acceptable decision-making. For example, it is nearly always considered unacceptable undertreatment for Jehovah’s Witnesses to refuse a life-sustaining blood transfusion for their child. On the other hand, parents may legitimately decline to have an epidural placed in their child for postoperative pain management, if the harm of foregoing optimal pain management may be mitigated by other adequate methods of pain control.
Anesthesiologists may best determine the appropriateness of a treatment by considering the amount of harm to the child, the likelihood of success, and the overall risk-to-benefit ratio. Anesthesiologists challenging inappropriate health care may benefit from inviting other clinicians to review the proposed plan and to engage the parent in discussion. Pursuing legal actions to redress questionable health-care decisions has significant familial and social ramifications. If all other methods fail, and anesthesiologists believe the desired therapy is outside the bounds of acceptable treatment, they should report the situation to proper child welfare authorities.
The legal and ethical approach to children of Jehovah’s Witnesses is based on the best interests standard. Jehovah’s Witnesses interpret biblical scripture to proclaim that anyone who takes blood will be “cut off from his people” and not earn eternal salvation (4,5). The courts have upheld the rights of nonpregnant adults to refuse blood transfusions based on the presumption that they are making an informed decision about the personal risks and benefits of receiving blood. The courts, however, do not permit parents to refuse blood on behalf of their children. This overriding of the parents’ wishes is based on the strong legal doctrine of parens patriae, the obligation of the state to protect the interests of incompetent patients. Indeed, although it is preferable to obtain a court order before transfusing a child against the parents’ wishes, anesthesiologists should not wait for a court order in an emergency situation.
SCHOOL-AGE CHILDREN AND YOUNG ADOLESCENTS
Patients between ages 7 and 14 should participate in decision making to the extent their development permits. Participation should increase as children mature.
School-age children are developing decision-making capacity; so anesthesiologists should seek both informed permission from the parent and assent and participatory decision making from the child. School-age children are capable of using logic and reason, but they tend to be more rigid and absolute in applying rules. Older school-age children begin to develop the flexibility to understand motives and different situations. Such situations may include whether to sedate a 6-year-old before an inhalation induction, to use an inhalation or intravenous induction of anesthesia in an 8-year-old, and to place an epidural for postoperative analgesia in a 12-year-old.
CLINICAL PEARL The definition of an emancipated minor, one who makes his or her own decisions regarding health care, depends on local law, but generally includes adolescents who are married, parents, or in the military and may include females who are pregnant.
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