Ethical Challenges in Forgoing Nutrition and Hydration in Infants with Severe Neonatal Encephalopathy

Key Message : This case highlights the evolving nature of prognosis in neonatal severe hypoxic-ischemic encephalopathy, and the ethical complexity of forgoing clinically assisted nutrition and hydration, emphasizing the need for ongoing, family-centered dialogue and palliative care support to guide compassionate, goal-concordant decisions.

Abstract: Background
This case explores the ethical and clinical complexities of forgoing clinically assisted nutrition and hydration (CANH) in a full-term infant with severe hypoxic-ischemic encephalopathy (HIE). The palliative care team was consulted early to support goals-of-care discussions and provide individualized, family-centered guidance. Family initially wanted comfort care and to forgo CANH based on initial prognostication. Over time, prognostication shifted as the infant tolerated full oral feeds and weaned off seizure medications, leading to questions of ethical permissibility of forgoing CANH.

Case:
The infant was born following a vacuum-assisted delivery and presented with persistent seizures requiring escalation to a midazolam drip. MRI revealed a global cortical insult involving approximately 70–80% of the cerebral cortex, along with moderate injury to the bilateral basal ganglia and thalami. Initially dependent on nasogastric (NG) feeds the family declined gastrostomy tube placement and chose to forgo CANH due to the high likelihood of significant global developmental delay. Over time, the infant improved clinically, weaned off seizure medications, and tolerated full oral feeds. Despite the family’s preference for continued inpatient care for end-of life, the infant no longer met criteria for hospitalization. The team provided counseling on transitioning home with outpatient follow-up with primary care and subspecialists.
Lessons Learned:
This case underscores the importance of individualized, family-centered decision-making in pediatric palliative care(1,2). The ethical permissibility of continuing or discontinuing life-sustaining treatments can be evaluated using several tools, including the Impermissible–Permissible–Obligatory (I-P-O) framework(3). Central to this evaluation are what informs the family’s conception of best interest, including their views on quality of life(4). Decisions to forgo life-sustaining treatments particularly around nutrition and hydration can generate moral distress among care teams and require ongoing ethical reflection and open dialogue. This case highlights the evolving nature of prognosis and the critical role of palliative care in guiding compassionate, goal-concordant care(5).

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