Code of Medical Ethics Opinion 2.2.1
Unlike health care decisions for most adult patients, decisions for pediatric patients usually involve a three-way relationship among the minor patient, the patient’s parents (or guardian), and the physician. Although children who are emancipated may consent to care on their own behalf, in general, children below the age of majority are not considered to have the capacity to make health care decisions on their own. Rather, parents or guardians are expected, and authorized, to provide or decline permission for treatment for minor patients. Nonetheless, respect and shared decision making remain important in the context of decisions for minors, and physicians have a responsibility to engage minor patients in making decisions about their own care to the greatest extent possible, including decisions about life-sustaining treatment.
Decisions for pediatric patients should be based on the child’s best interest, which is determined by weighing many factors, including effectiveness of appropriate medical therapies and the needs and interests of the patient and the family as the source of support and care for the patient. When there is legitimate inability to reach consensus about what is in the best interest of the child, the wishes of the parents/guardian should generally receive preference.
For health care decisions involving minor patients, physicians should:
(a) Involve all patients in decision making at a developmentally appropriate level.
(b) Base recommendations for treatment on the likely benefit to the patient, taking into the effectiveness of treatment, risks of additional suffering with and without treatment, available alternatives, and overall prognosis.
(c) For patients capable of assent, truthfully explain the medical condition, its clinical implications, and the treatment plan in a manner that takes into account the child’s cognitive and emotional maturity and social circumstances for patients capable of assent.
(d) Provide a supportive environment and encourage parents to discuss their child’s health status with the patient. Offer to facilitate the parent-child conversation for reluctant parents.
(e) Recognize that for certain medical conditions, such as those involving HIV/AIDS or inherited conditions, disclosing the child’s health status may also reveal health information about biological relatives or disrupt existing presumptions about the child’s relationships within the family.
(f) Work with parents/guardians to simplify complex treatment regimens whenever possible and educate parents in ways to avoid behaviors that put the child or others at risk.
(g) Ensure that when decisions involve life-sustaining interventions, patients have opportunity to be involved in keeping with their ability to understand decisions and their desire to participate. Physicians should ensure that the patient and parents/guardian understand the patient’s diagnosis, both with and without treatment. Physicians should discuss with the patient and parents/guardian of initiating an intervention with the intention of evaluating its clinical effectiveness after a specified amount of time to determine if it has led to improvement. Confirm that if the intervention has not achieved agreed-on goals it may be withdrawn.
(h) Respect the decisions of the patient and parents/guardian when it is not clear whether a specific intervention promotes the patient’s best interests.
(i) Seek consultation with an ethics committee or other institutional resource when:
- There is a reversible life-threatening condition and the patient (if capable) or parents/guardian refuse treatment the physician believes is clearly in the patient’s best interest.
- There is disagreement about what the patient’s best interests are. Physicians should turn to the courts to resolve disagreements only as a last resort.
(j) Provide compassionate and humane care to all pediatric patients, including patients who forgo or discontinue life-sustaining interventions.