Ethics Roundtable: How Much is Too Much?-Reference-Cited by-同舟云学术

Ethics Roundtable: How Much is Too Much?

Published:2022-04-24 Issue:1 Volume:40 Page:106-110
ISSN:1049-9091
Container-title:American Journal of Hospice and Palliative Medicine®
language:en
Short-container-title:Am J Hosp Palliat Care

Author:

Theodoro Mariana F.¹²^ORCID,Hays Jacinda³,DiBartolomeo Mara²,Carter Brian⁴

Affiliation:

1. Graduate Medical Education, Johns Hopkins All Children’s Hospital, St. Petersburg, FL, USA

2. Department of Pediatrics, Division of Neonatology, Johns Hopkins All Children’s Hospital, St. Petersburg, FL, USA

3. Department of Pediatrics, Division of Hospice and Palliative Medicine, Johns Hopkins All Children’s Hospital, St. Petersburg, FL, USA

4. Department of Pediatrics, Division of Neonatology and Bioethics Center, Children’s Mercy Hospital, Kansas City, MO, USA

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.

Publisher

SAGE Publications

Subject

General Medicine

Link

http://journals.sagepub.com/doi/pdf/10.1177/10499091221088829

Reference14 articles.

1. Carmi Syndrome in a Preterm Neonate: A Multidisciplinary Approach and Ethical Challenge

2. Clinical outcomes and molecular profile of patients with Carmi syndrome: A systematic review and evidence quality assessment

3. Attitudes Toward Neonatal Intensive Care Treatment of Preterm Infants With a High Risk of Developing Long-term Disabilities

4. Attitudes of Parents and Health Care Professionals Toward Active Treatment of Extremely Premature Infants

5. International Comparison of Care for Very Low Birth Weight Infants: Parents' Perceptions of Counseling and Decision-Making