is used instead of informed “consent” because “consent” implies that the patient is providing the legal consent. The implication of “informed permission” is that, although clinicians nearly always honor parental decision-making, parental decision-making does have boundaries. Physicians honor parental decision-making because they assume that parents desire the best for their children, parents have to live with the consequences of that decision, and parental values and goals often approximate their child’s future values and goals.
Boundaries of parental decision-making are informed by the “best interests” standard, which requires that parents and clinicians choose their decisions from within a range of reasonable options. This standard does not require clinicians to dogmatically insist on what they think is best for the child. However, if the parents are making a decision that is unacceptably outside the boundaries of reasonable decision-making options, then clinicians are expected to intervene in an escalating manner as necessary to protect the child.4 For example, if the child in the introductory case were 9 years old, then it is acceptable, if perhaps suboptimal, for the parents to choose intravenous pain management instead of epidural analgesia. If, however, the parents wanted to forgo all pain management out of fear of exacerbating a known family risk of narcotic addiction, then that decision would be an unacceptable treatment option and would require intervention by the anesthesiologist.
As children increase in age from 7 to 14 years, they are beginning to seek independence and are progressively capable of assimilating, analyzing, and using complex information. As a result, anesthesiologists should begin seeking both age-appropriate assent and parental informed permission from these children. Age-appropriate assent varies by age and the complexity of the decision, with particular focus on the potential risks of the decision. It ranges from involving a 7-year-old in determining whether to use preoperative premedication, to discussing preoperative intravenous placement with a 10-year-old, to seeking assent from a 12-year-old for placement of a peripheral nerve block. More important than the specifics is that anesthesiologists make an effort to integrated children into the decision-making process based on their maturity. As these children approach adolescence, they become increasingly able to understand parental and physician motives. For example, a 13-year-old child fearful of an awake intubation may recognize the importance of a sound medical decision and assent to the process. Anesthesiologists who involve children in decisions related to their care frequently cite patient autonomy, education and the protection of a child’s rights as the focus of the involvement.
Adolescents older than age 14 prioritize independence and have fully developed abstract thought and complex reasoning. Anesthesiologists must engage these adolescents in decision-making. However, fully developed cognitive abilities do not necessarily translate into good decision-making skills. Adolescents do not fully develop impulse control and consideration for long-term consequences until their early twenties. For this reason, decisions of significant risk and consequences (such as refusal of potentially life-saving transfusion therapy in the child of a Jehovah’s Witness) must undergo greater scrutiny and require significant evidence of decision-making capacity. Evidence of decision making capacity includes internally coherent reasoning, appreciation of cause and effect, appreciation of the range of outcomes and the effects that the different possibilities would have on loved ones, and the ability to imagine what circumstances would have to be different for them to choose an alternate path. Determining the extent of risk includes considering the amount of potential harm to the child by the intervention or its absence, the likelihood of occurrence for each of the likely outcomes, and the overall risk-to-benefit ratio.
Engaging children in decision-making
The American Academy of Pediatrics emphasizes that “no one should solicit a patient’s views without intending to weigh them seriously.”1 Pro forma and insincere engagement of children is easily recognized and brings harms to current and future patient-doctor relationships. A common mistake is well-intentioned vagueness in explaining options to children, leading the child to choose untenable options.
In non-emergent care, anesthesiologists should honor a child’s refusal of care. Some suggest the ability to refuse elective procedures begins around the age of 10, although in practice is seems to be older, perhaps around age 12.5 Clinicians should explore the child’s refusal in the hopes of addressing specific concern. Short delays, a change of location, changing into street clothes, or using pediatric mental health professionals often help address most refusals. Given the harm of ignoring a child’s preferences, clinicians should disregard pressures to proceed forthwith from operating room administrators, physicians or parents. Strategies such as using the operating room for other cases may help ameliorate these production pressures. To minimize the harm of pro forma solicitation of a child’s opinion, children should never be offered illegitimate choices. Moreover, they should be directly informed when they will undergo procedures despite their objections.
Anesthesiologists can minimize the harm of limiting a child’s decision-making authority by overtly honoring their authority about more negotiable decisions. For example, while a 12-year-old girl may not be permitted to choose whether to have an anterior cruciate ligament reconstruction because of potential long-term harm, it would be reasonable to permit a healthy adolescent to choose between a peripheral nerve block or intravenous narcotics to provide postoperative analgesia. The anesthesiologist still should explain to the patient that a nerve block may provide superior pain management, but should respect the patient’s wishes should she choose the alternative. This approach helps balance the sometimes unaligned goals of self-determination and safe and quality care for the adolescent.
Medical decisions: who ultimately chooses?
Disagreements about the appropriate clinical plan occur in any combination within the patient–parent–clinician triad. As with all disagreements about patient care plans, clinicians should focus on continued communication and transparent exchanges among the parties. Divining misunderstandings may resolve disagreements. Unfortunately, clinicians tend to avoid patients and family members that are complicated or are considered to be “difficult.” Avoidance appears to be the easier option, but in the long term, it entrenches opinions and exacerbates discord.
When the preferences of the parent and patient diverge, clinicians should attempt to define the reason for the disagreement. Parental and adolescent disagreement often is rooted in the dynamic of the adolescent establishing independence from the parent. Clarifying the merits of the options, offering an objective opinion based on stated values, and improving intra-family communication can help resolve these challenging problems.
Related posts:
Consent in laboring patients
Communitarian values in medical decision-making: Native Americans
Ethical considerations in interventional pain management
Conflicts of interest in research funding
Physician conscientious objection in anesthesiology practice
Opioid therapy in addicted patients: background and perspective from the US
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