Ethics Roundtable: How Much is Too Much?
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.
Am J Hosp Palliat Care
Carmi syndrome; end-of-life; epidermolysis bullosa; ethics; life-limiting condition; palliative care
Theodoro MF, Hays J, DiBartolomeo M, Carter B. Ethics Roundtable: How Much is Too Much?. Am J Hosp Palliat Care. 2023;40(1):106-110. doi:10.1177/10499091221088829