Ethics Roundtable: How Much is Too Much?

Document Type

Article

Publication Date

1-2023

Identifier

DOI: 10.1177/10499091221088829

Abstract

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.

Journal Title

Am J Hosp Palliat Care

Volume

40

Issue

1

First Page

106

Last Page

110

Keywords

Carmi syndrome; end-of-life; epidermolysis bullosa; ethics; life-limiting condition; palliative care

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