Beyond Autonomy: A Theological Anthropology for Pediatric Bioethics By Jessica Lynne Bratt Carle Dissertation Submitted to the Faculty of the Graduate School of Vanderbilt University in partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY in Religion September 30, 2019 Nashville, Tennessee Approved: Bonnie Miller-McLemore, Ph.D. Jaco Hamman, Ph.D. Larry Churchill, Ph.D. Keith Meador, M.D. Copyright © 2019 by Jessica Lynne Bratt Carle All Rights Reserved ii To Jonathan and Elliott, and to my parents, Ken and Laurel iii Acknowledgments My gratitude runs deep as I consider the many people who have contributed to this dissertation. You have inspired and encouraged me, prodded me towards bigger questions, shaped me into a more faithful Christian, and believed in my capabilities when my unbelief ran high. I thank my committee, first and foremost Bonnie Miller-McLemore, my advisor and an unparalleled source of wise theological scholarship on children and childhood. Jaco Hamman provided ample support not only for my studies in Religion, Psychology, and Culture, but also through his leadership of the Theology and Practice program. Keith Meador and Larry Churchill welcomed me to Vanderbilt’s Center for Biomedical Ethics and Society and its robust interdisciplinary dialogue and relationships. Camaraderie and commiseration among many fellow doctoral students buoyed my spirits in difficult seasons. Thanks especially to Yolanda Norton, Aimee Moiso, Courtney Bryant, Kyle Brooks, Stephanie Smith, Casey Sigmon, Lauren White, Richard Coble, Jon Stotts, Laine Walters Young, Peter Capretto, Bridgett Green, and Alan Murphy. I’m grateful for the courses I took at Vanderbilt with Barbara McClure, Evon Flesberg, and Bruce Rogers-Vaughn, and I count myself among the multitudes of Graduate Department of Religion students whose paths were kept smooth and straight by Karen Eardley’s attention to endless administrative details. Many others in Nashville became trusted friends and colleagues in study, ministry, and chaplaincy. Thanks to Raye Nell Dyer, Krister White, Cody Case, Matt Frierdich, Evelyn Graham, John Compton, Chris Benda, Denise Lillard, Katherine Smith, Guy Griffith, Michael Walters Young, and Nolan Huizenga. I’m grateful that the StoryCorps project came to Vanderbilt University Medical Center and allowed me the rich opportunity to interview Mildred Stahlman during the tenth decade of her inspiring life. iv After three years in Nashville, my two years in Memphis brought enriching friendships that helped keep my academic pursuits alive while far from campus. I thank Janel and Laryn Kragt Bakker, Heidi and Dave Rupke, Rosie and Geoff Bakewell, Joelyn and Tom Drennan, Anne Apple, Amy George, Stacy Smith and Kevin Gallagher, the congregation of Trinity United Methodist Church, Glenn Ann Martin, and the nurses and chaplains at St. Jude Children’s Research Hospital, especially Mark Brown and Brent Powell. Both the roots and the branches of my experiences in theological education and chaplaincy are populated with those who have encouraged my studies and honed my pastoral skills, especially Wentzel VanHuyssteen, Rick Osmer, Deborah Hunsinger, Abigail Rian Evans, Donald Capps, Robert Dykstra, Gordon Mikoski, and Iain Torrance at Princeton Theological Seminary, my CPE supervisors Karen Morrow and Sue Asher, and Boston Children’s Hospital colleagues Mary Robinson, Susan Harris, Peggy Bilotta, Bob Nee, and Michele Torres. Along with them I am grateful for Matt Flemming for first encouraging me to pursue an M.Div. and chart my own course, for the Pediatric Chaplains’ Network and its vibrant pursuit of excellence and collegiality, for Joanne Wolfe and the Pediatric Advanced Care Team at Boston Children’s and all the ways they are advancing pediatric palliative care, for Phoebe Chase Ramsey who is the best colleague-friend a hospital job could ever yield. I thank dear friends Molly James, Sara VanderHaagen, Kezia Shirkey, and Joe Kuilema for being living proof when I needed it most that a PhD can be accomplished. Friends Rebekah, Vicky, and Bruce Menning, Daniel Meeter, Sharyl and Peyton Dixon, Jenn Graffius, Barb Boers, Sharon Hayes, Juel Grevenstuk, Jennifer VanderMolen, Jenny and Jared Knol, and Joshlyn Litzenberger have been steadfast gifts in my life for many years and carried me through the last seven in ways I cannot begin to repay. v This project would not have been possible without the countless patients and families who have allowed me to enter into profound moments in their lives. I am humbled by what I have witnessed and hope that my work honors the sacredness of their trust in me. I give thanks for the patience, support, and profound example of lifelong learning I received from my parents, Ken and Laurel Bratt. My inner circle of family grew during these years of study and I am profoundly grateful for my husband Jonathan Bratt Carle and my one- year-old son Elliott, who have scaffolded my very being with joy and love and who no doubt are eager to see what life after my dissertation looks like. My siblings Christy and Justin and their families continue to shape my identity in ways that enrich my life deeply. I am grateful for my uncle Marvin Meyer, a prolific scholar of early Christianity who died from cancer in August 2012 during the very first week of my doctoral studies. He was a scholar whose curiosity and joy thoroughly animated his work, and in moments of academic tedium his memory has inspired me to persevere. I am grateful for my aunt Judy Strikwerda, whose profound developmental and physical disabilities have shaped her family members and so many others into more compassionate people. In my efforts to describe the full humanity of children in the midst of their less-developed cognitive skills, I often picture Judy, who likewise radiates the fullness of humanity that belongs to all of God’s children. Though I will gladly receive a diploma with my name on it, the names above are a constant reminder that pursuing this degree was by no means an autonomous effort. I recall the proverb, “If you want to walk fast, walk alone. If you want to walk far, walk together,” and am so glad that I have shared this journey in the company of so many beloved ones. vi Table of Contents Page DEDICATION........................................................................................................................... iii ACKNOWLEDGMENTS .......................................................................................................... iv Introduction .............................................................................................................................. 1 Background ................................................................................................................................ 2 A narrow approach to children .................................................................................................... 4 Problems with principles ............................................................................................................. 5 Theological resources ................................................................................................................. 9 The emergence of childhood studies ......................................................................................... 10 Children and religion ................................................................................................................ 12 Children’s hospitals - a fraught history ...................................................................................... 20 Methodology............................................................................................................................. 23 Chapter summaries and development of the argument ............................................................... 25 Chapter I. Situating the pediatric patient in clinical ethics ................................................................ 29 The birth of bioethics and the emergence of the principlist model ............................................. 31 The principlist model’s rise to prominence .................................................................... 36 Autonomy in the principlist model................................................................................. 37 Surrogate decision-making ........................................................................................................ 40 Substituted judgment ..................................................................................................... 41 Precedent autonomy ...................................................................................................... 42 The best interests standard ............................................................................................. 42 Models for pediatric decision making........................................................................................ 43 Buchanan and Brock: the best interests standard ............................................................ 45 Diekema: the harm principle .......................................................................................... 50 Miller: basic interests .................................................................................................... 55 Autonomy’s problematic implications for children .................................................................... 56 Narrow regard ..............................................................................................................