DNR Decision-Making in Pediatric Patients with Congenital Anomalies Incompatible with Life
Parents should be involved in the DNR decision through a shared decision-making process with the medical team, rather than requiring approval from three providers. 1
The Correct Approach: Shared Decision-Making with Family
The American Academy of Pediatrics explicitly states that parents and family caregivers are recognized as best able to appreciate the best interests of the child and should be fully involved in decision-making about forgoing life-sustaining medical treatment, including DNR orders. 1 This represents the central ethical framework for pediatric end-of-life decisions.
Key Elements of the Decision Process:
The treating physician writes the DNR order after documented discussion with parents/family, not after approval by three separate physicians. 1, 2
Parents serve as surrogate decision-makers and have rights to make decisions about resuscitation, though these rights are limited by the infant's best interests. 3
The physician must document the rationale for the DNR order, prognosis, content of discussions with family and medical team, expressed wishes of family decision-makers, and any unresolved issues. 1
When Multiple Providers Should Be Involved
While three physicians are not required to approve a DNR order, interdisciplinary consultation is strongly recommended in complex cases:
Consultation with palliative care specialists can promote effective communication and support for families. 1
Ethics consultation services should be utilized when conflicts arise between the care team and family, or when the care team is strongly divided about treatment options. 1
Multiple pediatric subspecialists may contribute guidance when caring for children with medical complexity, but this is for clinical input, not formal approval. 1
Special Considerations for Congenital Anomalies Incompatible with Life
For newborns with life-threatening congenital anomalies where prognosis is uncertain but likely very poor, the AAP recognizes that:
Resuscitation may not be indicated when congenital anomalies are associated with almost certain early death and unacceptably high morbidity among rare survivors. 1
Shared decision-making with the family is supported for conditions with uncertain prognosis where survival is borderline. 1
The same ethical principles apply as for other children: interventions may be withheld when there is consensus they do not provide net benefit and fail to support the child's best interests. 1
Common Pitfalls to Avoid
Do not assume unilateral physician decision-making is standard: While some states legally permit physicians to write unilateral DNAR orders in rare circumstances, this should only occur after exhaustive conflict resolution attempts and ethics consultation. 1, 4
Do not confuse DNR with withdrawal of all care: DNR orders specifically address cardiopulmonary resuscitation only and do not automatically limit other medical interventions unless explicitly stated. 1, 2
Do not use oral DNR orders: A licensed physician must write the order in the medical record with full documentation. 1, 2
Documentation Requirements
The written DNR order must include:
- Clear statement of which interventions are withheld (chest compressions, defibrillation, etc.). 2
- Explicit instructions about which interventions continue (comfort measures, oxygen, pain management, etc.). 2
- Date of implementation and signatures of physician and family/surrogate. 2
- Plan for periodic review, especially if the patient's condition changes. 5, 2