Journal of Pediatric Ethics Volume 1, Number 1 Fall 2017 Bias in Pediatric Medicine 3 From the Editors Nneka Sederstrom and Michael Sprehe Features 4 Gatekeeping and Bias Against Pediatric Risk in Solid Organ Transplant Aaron G. Wightman and Simon P. Horslen 8 Cultural Bias in American Medicine: The Case of Infant Male Circumcision Brian D. Earp and David M. Shaw 29 Partial Survivors: The Brokenness of Intact Survival Paul C. Mann 34 If Truth Be Told: Paternal Nondisclosure and Neonatal Herpes Simplex Virus Infections William Sveen, Meera Sury, and Jennifer Needle 38 “An Opportunity to Fail”: An Examination of Bias in Pediatric Residents’ Case Presentations Hellen Ransom and Ronald M. Perkin 43 The Ethical Implications of Bias in Counseling Parents of Children with Trisomy 13 and 18 Rebecca J. Benson, Laura A. Shinkunas, and Joy Salls 48 Caregivers’ Bias and Communication at Patient “Hand-Off”: The Benefits of the Bring it Bedside Program Linda Lefrak and Rachael Lamsal The Family Voice 54 Mother Love Perla Morley 55 Desperation. Exhaustion. Fear. Julie Martindale 58 Perfect “Children’s Parents” Stacy Holzbauer Continuing Medical Education 27 CME Test for the Journal of Pediatric Ethics, Volume 1, Number 1 Journal of Pediatric Ethics Children’s Hospitals and Clinics of Minnesota, Clinical Ethics Department, 2525 Chicago Avenue South 17-750 Minneapolis, MN 55404 • 612-813-6169 • Fax: 612-813-5802 • [email protected] • www.jpedethics.com EDITOR-IN-CHIEF EXECUTIVE DIRECTOR MANAGING EDITOR Michael Sprehe, MPH, MDNneka Sederstrom, PhD Emily Rogers, MHA ADVISORY BOARD MEMBERS Carolyn Serie, LICSW Angela Goepferd, MD Manager, Social Work and Co-Chair, Ethics Committee Director, Medical Education Children’s Minnesota Children’s Minnesota Kris Catrine, MD Maurice Sholas, MD Associate Medical Director, Pain and Palliative Care Clinic Senior Medical Director, Rehab Services and Co-Chair, Ethics Committee, Children’s Minnesota Children’s Minnesota John Egan, MD Nancy Mendelsohn, MD Chair, Ethics, Abbott Northwestern Hospital Chief of Specialty Pediatrics Minneapolis, MN Children’s Minnesota Maggie Cavanaugh, RN Sheldon Berkowitz, MD Patient Care Supervisor, Cardiovascular Care Center Medical Director for Case Management and Consultant, Consultant, Clinical Ethics Department, Children’s Minnesota Clinical Ethics Department , Children’s Minnesota Dave Overman, MD David Dassenko, MD Chief, Cardiovascular Surgery Anesthesiologist Children’s Minnesota Children’s Minnesota Stephen Kurachek, MD Joel Wu, JD Intensivist, Pediatric Intensive Care Unit Senior Fellow/Lecturer, School of Public Health Law and Children’s Minnesota Management, University of Minnesota, and Visiting Alberto Orioles, MD Scholar, Clinical Ethics Department, Children’s Minnesota Pediatric Intensivist, Children’s Respiratory and Critical Care Hunter Groninger, MD Specialists, and Consultant, Clinical Ethics Department Director, Palliative Care Children’s Minnesota MedStar Washington Hospital Center, Washington, D.C. Heidi Kamrath, DO Melanie Brown, MD Neonatalogist Associate Medical Director, Integrative Medicine Children’s Minnesota Children’s Minnesota Journal of Pediatric Ethics (online): ISSN 2475-5516 Journal of Pediatric Ethics (print): ISSN 2475-5508 Journal of Pediatric Ethics is a peer-reviewed, refereed journal. To subscribe, go to https://www.childrensmn.org/jpe. For assis- Photocopying: All rights reserved. No part of this journal may be tance with subscriptions, please contact Emily Rogers, Managing reproduced or transmitted in any form or by any means, electronic Editor, at 612-813-6169 or [email protected] or mechanical, including photocopying, recording, or by any other information storage and retrieval system without the prior written Subscription type: Pricing permission of Journal of Pediatric Ethics. Individual, Print Only* ............................................................ $75 Note: Journal of Pediatric Ethics does not hold itself responsible Individual, Electronic Only* .................................................... $70 for statements made by any contributor. Statements or opinions Individual, Print and Electronic* ............................................. $90 expressed in Journal of Pediatric Ethics reflect the views of the Institution/Library, Print Only ................................................ $350 authors. This journal is published as an information and research Institution/Library, Electronic Only ....................................... $250 tool only. The publisher is not rendering legal or medical advice Institution/Library, Print and Electronic ................................ $500 nor is the publisher to be held liable for the accuracy of the infor- mation contained herein. * Members of the American Society for Bioethics and Humanities receive a 15% discount with submission of their ASBH member number. © 2017 by Journal of Pediatric Ethics Volume 1, Number 1 The Journal of Pediatric Ethics 3 From the Editors Nneka Sederstrom and Michael Sprehe ABSTRACT The Journal of Pediatric Ethics is also interested to hear from families enmeshed in these complex The Co-Editors-in-Chief of the Journal of Pediatric Ethics ethical cases. The Family Voice section will be dedi- welcome the reader to the first issue of the new journal. cated to parents and families who have experienced situations related to each theme. Our hope is to pro- Dear Reader, vide a voice for all parts of a care team, not simply Thank you for subscribing to the Journal of Pe- from the healthcare providers. diatric Ethics! At Children’s Minnesota, we realize, We are excited to bring you the first ethics jour- along with many of you, that the ethical issues aris- nal specific to pediatrics. Our goal is to provide a ing in children and young adults are unique and resource that is useful to all who work with infants, deserve their own forum. In an effort to address this children, and young adults across the spectrum of unmet need, we are establishing this journal to fo- healthcare, research, and policy. We realize, how- cus specifically on the ethical complexities that arise ever, that this is a daunting task with many chal- in pediatric medicine. lenges, and we view this endeavor as a work in As an initial approach, each issue of the journal progress. will be theme based. For our inaugural issue, we We are looking to you, the reader, to guide us, chose the topic of bias, given the growing recogni- through your provision of ideas, constructive feed- tion of the impact of bias on healthcare outcomes back, and original research during the growing stages and health disparities. For subsequent issues in of this journal. We will be accepting and publishing 2017, we will be soliciting articles on communica- letters to the editor in response to articles published, tion and on advanced care planning/limitations of feedback on content, or recommendations for future treatment. issues, when appropriate. Together we hope that we can establish a journal that is worthy of the popula- Nneka Sederstrom, PhD, MPH, MA, FCCP, FCCM, is the Execu- tion for which we so passionately care. tive Director of the Clinical Ethics Department at Children’s Min- Thank you again for your subscription to the nesota in Minneapolis, and is Executive Director of the Journal of journal and welcome to the first ever Journal of Pe- Pediatric Ethics. [email protected] diatric Ethics. Michael R. Sprehe, MD, MPH, is a Physician specializing in pedi- atric hematology and oncology at Children’s Minnesota. Sincerely, ©2017 by Journal of Pediatric Ethics. All rights reserved. The Members of the Editorial Board 4 Journal of Pediatric Ethics Fall 2017 Features Gatekeeping and Bias Against Pediatric Risk in Solid Organ Transplant Aaron G. Wightman and Simon P. Horslen ABSTRACT tial candidates for whom solid organ transplant is clearly in their best interests. The change in the nature of gatekeeping may also We present the case of a three-year-old boy with an inherited undermine the trust of both patients and the public in transplanta- progressive liver disease who developed liver failure and required tion. a liver transplant to survive into adulthood. The child had a second medical condition that increased his risk of poor outcome during a CASE REPORT liver transplantation, but the absolute risk was unknowable. Newer regulations, including the 2007 Centers of Medicare & Medicaid Alan is a three-year-old boy with liver failure Services (CMS), which published the Conditions of Participation due to an inherited progressive liver disease. He has (CoPs) for United States transplant centers, fostered a new envi- had numerous complications as his liver function ronment that created incentives for transplant centers to be more worsened, including portal hypertension, coagulo- conservative in the selection of candidates and altered the tradi- pathy, and pathologic fractures. Without a transplant, tional role of gatekeeping performed by the transplant team.1 After he is expected to die in 18 to 24 months. Thus, the reviewing the relevant U.S. transplant policies and their impact on recommended therapy for his liver failure is trans- transplant centers, this review seeks to provide ethical arguments plantation. Liver transplantation is a highly effica- related to justice, fairness, and utility in the distribution of scarce cious, life-sustaining therapy. Complicating matters, organs in this more risk-averse environment. The net effect of the Alan has a deformity of his cerebral