TOPIC 9: Decision-Making (Minors) – Recognize And Apply Ethical Principles Regarding Minors As Decision-makers
OFFICIAL ABP TOPIC:
Recognize and apply ethical principles regarding minors as decision-makers
BACKGROUND
While parents or guardians provide consent for medical treatment on behalf of children, physicians have an ethical obligation to involve pediatric patients in the medical decision-making process at a developmentally appropriate level. Increased age and maturity equates to an increased right for minors to be informed about their health status and participate in care decisions. Balancing the developing autonomy of the minor patient with the decision-making authority of parents/guardians can lead to ethical challenges.
KEY ETHICAL PRINCIPLES
- Autonomy: Respecting the emerging autonomy of minors while recognizing the decision-making responsibilities of parents and physicians.
- Beneficence: Ensuring decisions promote the child’s best interests from a holistic perspective, considering medical, emotional, social, and family factors.
- Non-Maleficence: Preventing harm to pediatric patients while being mindful of developmental stage and psychosocial impacts of medical decisions.
- Justice: Treating minor patients equitably and respecting them as developing persons with growing moral capacities.
- Rights: Parental rights to make healthcare choices for their children are not absolute. They must be balanced with the child’s right to have their interests protected and to participate in decisions as they mature.
- Consent and Assent: Parents provide informed consent on behalf of minor patients, while assent is the child’s agreement to treatment. Obtaining assent when possible shows respect for the child’s developing autonomy.
THE MINOR’S ROLE IN DECISION-MAKING
DEVELOPMENTAL CONSIDERATIONS
- Assess the minor’s cognitive and emotional maturity to understand the risks, benefits, and alternatives of proposed treatment. More mature minors should have a stronger voice.
- Consider chronological age; by age 14, most adolescents have decision-making abilities similar to adults. Individual state laws may specify the minimum age to be considered a “mature minor.”
- Take into account the minor’s past healthcare experiences, especially with chronic conditions, which can enhance their knowledge and capacity. An adolescent with sickle cell disease may have valuable insight into their treatment goals and quality of life considerations.
PARENTAL RESPONSIBILITY AND THE HARM PRINCIPLE
- Parents serve as co-fiduciaries with physicians, tasked with protecting a child’s health and well-being while nurturing their developing autonomy.
- Parental decisions should be framed in terms of responsibility to the child rather than absolute rights. The “harm principle” recognizes limits to parental authority if decisions place the child at significant risk of serious harm. For example, parental refusal of life-saving treatment for a child based on religious objections should be overridden to prevent death or disability.
THE PHYSICIAN’S ROLE
- Provide developmentally appropriate explanations of the medical situation and treatment options to the minor patient.
- Encourage shared decision-making between parents and children. Seek to understand the reasoning behind a minor’s agreement or disagreement with a care plan.
- Advocate for the minor patient if parental decisions clearly conflict with the child’s best interest, such as parental refusal of needed mental health treatment. Engage ethics committees or social services for unresolvable disputes.
APPLYING PRINCIPLES TO PRACTICE
SEEKING THE MINOR’S ASSENT
- Strongly encourage the active participation of adolescents with decision-making capacity.
- For younger children, seek assent by explaining options in developmentally appropriate ways. Use simple language, visual aids, and analogies to help the child grasp key concepts.
- If the minor dissents, explore their reasoning and approach disagreements with collaborative problem-solving. Respect refusals if the treatment is not immediately necessary to safeguard welfare.
- As a last resort, use of force (e.g., restraints) may be appropriate for essential treatments if the minor lacks decision-making capacity. Avoid force if possible for dissenting mature minors.
SHARED DECISION-MAKING
- Collaborate with families to develop a shared understanding of goals of care in light of the patient’s medical and psychosocial needs and the family’s beliefs and values.
- Elicit input from all involved parties and make recommendations aimed at maximizing benefits and minimizing harms to the child.
- Ensure transparency in communication and provide resources for support and education as families navigate difficult decisions.
LEGAL AND CULTURAL CONSIDERATIONS
- Emancipated minors and mature minors may have expanded rights to consent to care under state laws. Physicians should be aware of relevant policies in their jurisdiction.
- Certain health services (sexual health, substance abuse, mental health) may allow minors to access care independently. Many states allow adolescents to consent to STI testing and treatment without parental permission.
- Be sensitive to cultural and religious values influencing family decision-making while ensuring that the child’s needs remain at the forefront.
RESOLVING CHALLENGES
- Connect families with peer support groups and outside resources to help inform their decisions.
- When intractable disagreements arise between parents, physicians, or the patient, engage ethics committees or other institutional resources for conflict mediation.
- Recognize that legal intervention, while sometimes necessary, can be very distressing and should be used only as a last resort if the child is in danger.
CASE EXAMPLES
- A 7-year-old with recurrent leukemia tells her parents she is tired of hospital visits and painful treatments. The parents want to pursue an aggressive experimental chemotherapy regimen. The physician should sensitively explore the child’s quality of life concerns and the family’s goals of care. A family conference with the oncology team and a therapist may help the family come to a decision that balances their hopes for cure with their child’s day-to-day experience.
- An 11-year-old with severe cerebral palsy develops pneumonia. The child’s parents, overwhelmed with his care needs, ask to transition to comfort measures only. The physician should empathize with the family’s situation while advocating for the child’s best interest. A team approach involving palliative care, social work, and respite resources may help support the family in their caregiving role while pursuing appropriate acute treatment for a reversible condition.
REFERENCES
https://www.pbrlinks.com/moca2025-ama-pediatric-decision-making-background-reports
https://www.uptodate.com/contents/consent-in-adolescent-health-care