Sarah Herrington is a biology major and she is a 2024-25 health care ethics intern at the Markkula Center for Applied Ethics at Santa Clara University. Views are her own.
Ethical decision making is a cornerstone of medical practice that aids physicians’ ability to provide positive outcomes for their patients. In any medical situation, complexities arise from conflicting opinions, medical uncertainties, and the challenge of determining the best course of action. However, pediatrics has additional relationships and complications that introduce new considerations that are important to unpack and comprehend. Over the last few decades, the understanding and guidelines of pediatric ethics have undergone changes. How has it evolved and where is it going?
The Case of Billy Best
The Billy Best case brought the intricacies of pediatric ethics to the forefront of medicine and media. In 1994 Billy Best was diagnosed with Hodgkin's lymphoma, a common and curable form of childhood cancer, at the age of 16. However, after 2 months of treatment, Billy ran away from home because he felt like the chemotherapy was hurting him more than it was healing. Only after his parents promised to seek alternative treatment, including essiac tea, dietary modifications and, 714-X, an injectable that claims to protect and stabilize the immune system, did Billy return. Fortunately, this treatment was successful for Billy and he remains in remission, but the efficacy has still not been proven and it is not regarded as the standard of care for lymphoma.
Figure 1. Billy’s Letter
The case of Billy Best highlights the challenges of adolescent decision making in pediatrics. As a minor, Billy’s parents were the ultimate legal decision makers. However, as the sole patient, he wanted to be involved in decisions relating to his treatment. Initially, Billy’s physicians and parents encouraged him to follow the standard treatment protocol, chemotherapy, but his refusal highlighted the ethical tension between parental authority, medical recommendations, and a minor’s right to have a say in their own health care decisions. In 1994, adolescent involvement in medical decision making was limited. Billy’s case sparked a conversation in the media, leading to one of the first public conversations regarding a minor’s autonomy in health care. After the media became involved in Billy’s case, there was a movement to reassess the practice of decision making in pediatrics.
Evolution of Pediatric Decision Making
1976: As mentioned in the Billy Best case assessment, the American Academy of Pediatrics (AAP) only briefly mentioned minors’ roles in decision making.
1995: AAP updated their views on adolescent decision making to address the importance of including pediatric patients in health care in an age and developmentally appropriate fashion, in response to the Billy Best case. AAP published, “A better understanding now exists as to how physicians should collaborate with patients and parents in making these decisions. Patients should participate in decision making commensurate with their development; they should provide assent to care whenever reasonable.”
2022: Following a symposium titled, “Best Interests and Beyond: Standards of Decision Making in Pediatrics,” a consensus on the standards of decision making generated six recommendations.
Figure 2. Consensus Recommendations
Pediatric Decision Making: Consensus Recommendations
These updates better include the pediatric patients’ autonomy in their treatment. As the patient is the one with the disease and undergoes treatment, they have the best understanding of their quality of life and values. Allowing a child to understand their condition and express beliefs is a form of respect and allows them to anticipate care and outcomes. Additionally, research shows that, when given child-friendly information and time to reflect on issues, adolescent’s medical decision making is comparable to adults. As health care continues to improve the involvement of children in decision making, it is important to assess the challenges that come with shared decision making.
Common Challenges of Implementation
Determining Competency:
In any medical decision, regardless of age, a certain level of competency and understanding is required for informed decision making. Children’s cognitive development and desire to be involved in decision making is not always linear and comparable to age. Determining how much children understand their condition and are making informed decisions is important for assessing how much they should be involved. To overcome this, the rules of Gillick Competence can assess the competency and capacity of a child under the age of 16. It recommends that for a child to be able to consent they must comprehend the nature and risks of treatment, have a level of maturity that allows them to assess the situation, must be able to explain their reasoning, and must be making the decision voluntarily. It is a physician's job to assess each patient to determine if consent can be granted.
Disagreements:
What happens when children openly disagree with their parents? The default might be to immediately grant the wishes of the parents, as the legal guardians of a minor. However, this approach doesn’t guarantee the best outcomes. As seen in the Billy Best case, when pediatric patients object to treatment they may resist care, seek alternative options, or make rash decisions.
Adversely, there are cases where adolescents may seek treatment that is not approved by their parents. For example, the controversies surrounding the COVID-19 vaccine led to many instances of children seeking vaccination without parental consent. In these cases the recommendation is to call family meetings and an ethics consultation to resolve conflicts. If these are unsuccessful then essential interventions can be directed by a court order. The most common modern approach is to combine parental permission and child assent. Assent generally means “ affirmative agreement of a minor who is to take part in the informed consent procedure in a way adapted to his or her capabilities, while their legal representative has the formal role of consenting.” Additionally, allowing pediatric patients to have control over even just small parts of treatment including, the time of medication and placement of needle for blood draws, can lead to more success and involvement of the patient.
Cultural Differences:
The Western approach and view of decision making is not a universal norm and understanding these differences is important for respecting care and navigating cross-cultural decision making. A key consideration that may differ in pediatrics across cultures is the disclosure of prognosis to the patient.
A hypothetical 15 year-old patient, Sara, was being treated for advanced liver cancer in the Middle East. When her disease progressed, her family brought her to the U.S. for additional treatment. Once in the U.S., her family requested that Sara not be told that her disease was aggressive or incurable, because they believed that it would cause her suffering.
How do physicians balance respecting the autonomy of the family and patient with their integrity around truth telling? In the U.S., nondisclosure is considered unacceptable and could be associated with long-term patient distress and an inability to comprehend and prepare for what's to come. However, in many other cultures, disclosure can be considered cruel and many physicians defer the decision to the family of the patient. To be empathetic and respectful following the idea of cultural relativism, or the idea that no cultural code or standard can be used to judge others, is important. Just as we expect others to honor our beliefs, we should extend the same courtesy to those whose cultural values and decision-making processes differ from our own.
Confidentiality:
In the previous section, “Cultural Differences,” instances where information is kept from a patient due to cultural norms was discussed. What about scenarios where the young patient has information they want to keep confidential from their parents or guardians? In a medical setting, confidentiality is “the principle of keeping secure and secret from others, information given by or about an individual in the course of a professional relationship.” It is necessary for maintaining trust, dignity, and protecting the autonomous decision making of patients. However, when the patient is a minor, maintaining confidentiality becomes more complex due to parental or guardian involvement in medical decisions.
In some cases, adolescents may wish to withhold information about sensitive matters due to fear of judgment and safety. For example, California Law states that minors can consent to abortion, contraceptives, outpatient mental health treatment, care related to the prevention of sexually transmitted diseases, and more, while maintaining confidentiality from parents or guardians. However, it must be noted that not all states are as permissive concerning minor’s confidentiality rights, and an assessment of adolescent privacy laws found no states had identical policies and many were confusing and unclear.
Overall, AAP suggests that confidentiality policies must be clearly communicated by physicians to young patients and their families to maintain trust between all the parties and aid in clarification. The information shared by the young patient should remain confidential except in situations when the safety of the patient or others stands in jeopardy. For example, in a case where a young psychiatric patient discloses that they are messaging explicit photos of themself to others, a physician must disclose that information due to the legal implications of the situation. Ultimately, while confidentiality is a vital aspect of health care, it must be carefully balanced with legal and ethical responsibilities to ensure patient autonomy and safety.
Conclusion
The evolution of pediatric ethics reflects the recognition of the importance of involving young patients in decision making. In 1994, Billy Best might have lacked the autonomy that would have allowed him to feel comfortable expressing his desires to his physicians and parents about his treatments. However, his case inspired a reassessment of how pediatric patients can and should be more involved in decisions concerning their own care. Since then, it has been found that pediatric patients who receive information at a level they can understand, are given time and resources to discuss the situation, and are supported by their parents and physicians tend to have better outcomes. Complications, like non-standardized rules across states, lack of training and socio-cultural and familial influences will always exist. However, with continued awareness about pediatric patient autonomy, health care can continue to strive to provide their youngest patients with the respect and care they deserve.