Ethics Roundtable: How Much is Too Much?


Ethics Roundtable: How Much is Too Much?


Theodoro MF; Hays J; DiBartolomeo M; Carter B


American Journal of Hospice and Palliative Medicine




Infant; Newborn; Humans; Infant; Premature Ectodermal Dysplasia Pylorus/abnormalities; Gastric Outlet Obstruction; Carmi syndrome; end-of-life; epidermolysis bullosa; ethics; Life-limiting condition; Palliative Care


How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation with a diagnosis of Carmi syndrome (junctional epidermolysis bullosa and pyloric atresia). While the medical team felt that a do-not-resuscitate order and redirection to comfort care were appropriate, the family held on to hope for recovery and wished to continue with full intensive care measures.


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February List 2023



Theodoro MF; Hays J; DiBartolomeo M; Carter B, “Ethics Roundtable: How Much is Too Much?,” Pediatric Palliative Care Library, accessed April 20, 2024,