Pediatric Bioethics: Ethical Guidance for Responding to Parental Requests for Potentially Nonbeneficial Treatment

Medical decision-making in pediatrics relies on shared decision-making (SDM) between parents/caregivers and the medical team, and at times the child as well. In most cases, SDM allows all parties to effectively share and understand information, discuss goals and values, and agree to a reasonable plan of care. However, disagreements do arise, and such conflict is becoming a recognized challenge within pediatrics as public mistrust in health care rises.

Parent-clinician disagreements typically take one of two forms. The first type of disagreement occurs when parents decline a recommended intervention. In such cases, there is a widely agreed upon process for resolving the disagreement: the clinician must determine whether the refusal (1) significantly increases the likelihood of imminent serious harm to the patient and, hence, permits state intervention on the child’s behalf¹ or (2) falls within “the zone of parental discretion,” which refers to “the ethically protected space where parents may legitimately make decisions for their children, even if the decisions are sub-optimal for those children (i.e., not absolutely the best for them).”² The second type of disagreement occurs when parents request treatment for their child that is not medically recommended and potentially nonbeneficial. In those cases, the physician must evaluate the benefits and burdens of treatment and balance parental authority with responsible therapeutics, all while acknowledging and seeking to mitigate the risk of bias.

Culturally, society and the health care community have seen a shift toward increased emphasis on autonomy in the 20th century. Respect for autonomy has allowed competent patients (and legally authorized surrogates) to refuse unwanted treatment, including life-sustaining therapies. Some have argued the reverse is also true, concluding that patients have a right to demand treatment that the medical team did not offer or recommend. However, this positive right to request or demand treatment can conflict with a physician’s duty to “do no harm” or the ethical principle of nonmaleficence. How should physicians respond to such requests? Are they permitted (or even ethically obligated) to withhold nonbeneficial interventions?

The American Academy of Pediatrics (AAP) recently published two reports to assist physicians when they encounter requests for potentially nonbeneficial treatments, especially when disagreements are intensified by high-stakes and complex decisions around life-threatening situations (see both the Clinical Report and Technical Report by Levine et al., 2026^3,4). In these reports, the AAP reiterates that SDM remains the preferred approach to medical decision-making in pediatrics. By enabling clinicians to explore the parent’s understanding of their child’s condition and possible treatment options, share information and identify misperceptions, and recognize their own biases, SDM offers the most reliable process for formulating a goal-concordant treatment plan that avoids parent/clinician disagreement. Furthermore, the reports recommend early, transparent communication along with involvement of interdisciplinary resources including palliative care, ethics consultation, social work and chaplaincy. This strategy will typically resolve most conflicts and futility disputes.

When conflicts do arise regarding parental requests for potentially nonbeneficial treatment, the clinician’s primary ethical obligation is to promote the child’s best interests. However, this duty must be conditioned with a healthy respect for uncertainty in prognosis and the danger of overly rigid definitions of “futility” and “nonbeneficial treatment.” The reports intentionally use the term “potentially nonbeneficial treatment,” reflecting that value judgments often accompany medical uncertainty. Respect for parental authority is important but is not unlimited. When requested treatments are unlikely to benefit the child, and especially when they may prolong suffering or impose substantial burdens, clinicians have an ethical duty to advocate for treatments aligned with the child’s welfare. Equity, bias and trust also deserve explicit attention. Historical inequities, racism, socioeconomic disadvantage, and differing cultural or religious beliefs can influence disagreements and should be addressed with humility rather than assumption.

In cases where disagreements persist despite efforts to engage in SDM in good faith, the AAP recommends that each institution establish a formal process for how to address and resolve these conflicts to ensure consistency, transparency and appropriate support for both the family and the medical team. This formal process should include opportunities for parents to seek (1) additional information gathering and consultation, (2) transfer of care and second opinions, (3) consultation with the Ethics Committee, (4) consideration of temporizing measures in the absence of consensus, and (5) appeals if needed.

Although conflicts stemming from parental requests for potentially nonbeneficial treatment are rare, they are on the rise, and physicians should be aware of how best to prevent them and how to address them if they occur.

References:

1. Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioethics. 2004;25(4):243-264.
2. Gillam L. The zone of parental discretion: an ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child. Clin Ethics. 2016;11(1):1-8.
3. Levine DR, Laventhal NT, Macauley R; Committee on Bioethics. Responding to parental requests for potentially nonbeneficial treatment in life-threatening situations: clinical report. Pediatrics. 2026;157(4):
4. Levine DR, Laventhal NT, Macauley R; Committee on Bioethics. Responding to parental requests for potentially nonbeneficial treatment in life-threatening situations: technical report. Pediatrics. 2026;157(4):e2026076119.