The Demands of Partnership: A Normative Foundation for Shared Medical Decision-Making Dissertation Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy in the Graduate School of The Ohio State University By Allison Emily Massof, M.A. Graduate Program in Philosophy The Ohio State University 2018 Dissertation Committee: Piers Norris Turner, Adviser Dana Howard Tristram McPherson Abe Roth Copyright by Allison Emily Massof 2018 ii Abstract The contemporary vision of the doctor-patient relationship is a partnership. With the rejection of medical paternalism, ethicists and medical professionals recognized the importance of ensuring that patients were active participants in decisions regarding their care. In place of granting doctors authority to make medical decisions, doctors and patients are now expected to share authority over treatment decisions. However, this expectation is not supported by the current normative foundation for the doctor-patient partnership; specifically, its commitment to respect the patient’s right of self-determination. Therefore, the contemporary ideal of the doctor- patient relationship is at odds with the normative foundation upon which it rests. The aim of this dissertation is to offer a revision to the normative foundation for the doctor-patient partnership, in order to do justice to the ideal of a shared decision-making process. In Chapter 1, I detail the theoretical development of the ideal of the doctor-patient partnership and I identify a tension between the envisioned partnership and the commitment to respect the patient’s right of self-determination. In Chapter 2, I show that this tension is deeper than has been appreciated. The incompatibility between the doctor-patient partnership and the commitment to respect the patient’s right of self-determination runs deeper than has generally been acknowledged. In Chapter 3, I argue that we should abandon the commitment to respect the patient’s right of self-determination. I argue that the partnership model is worth preserving because it i enables the doctor to function fully as a patient health advocate. The entitlement to try and persuade patients to revise decisions regarding their care is important for protecting patient health from being devalued. If we instead embrace an account of the doctor-patient relationship that requires that persuasion be justified, we lose out on a key dimension of this valuable social role. In Chapter 4, I offer a new account of the foundation for patient authority in medical decision-making. I argue that patients are entitled to participate in and control the outcome of medical decision-making due to an interest in not being dominated by the doctor. The patient’s interest in not being dominated not only provides a compelling account of the badness of medical paternalism; it also provides an account of why patients are entitled to directly participate in deliberation about their care and to be deferred to in cases of intractable faultless disagreement. However, non-domination is compatible with the doctor’s entitlement to try and persuade patients to revise their decisions. In Chapter 5, I conclude the dissertation by examining how to share decisional authority in such a way that the vision of the doctor-patient partnership can be achieved. I propose an alternative account of decisional authority that draws on Abraham Roth’s account of practical intersubjectivity. This account of decisional authority is distinctive because it awards doctors and patients the authority to reopen deliberation; this contrasts with the prior accounts’ focus on the authority to close deliberation. It is an account of this kind, I argue, that is able to secure the vision of the doctor-patient partnership. ii Acknowledgments First off, thanks to my adviser, Piers Turner. I’m just now appreciating how much you pushed me to improve and really develop the ideas in this work, because you’ve always done so with patience, kindness, and humor. It’s been wonderful to work with you these past several years, and I’m grateful for your mentorship. I’m also deeply indebted to my committee, Dana Howard, Tristram McPherson, and Abe Roth, for their extensive and helpful feedback at all stages of this process. In addition to my committee, I’ve been lucky in encountering wonderful teachers over the past thirteen years. Thanks to David Soud, David Merli, and Robert Kraut for the years of guidance and confidence. Special thanks to Pam Vail for teaching me to show up, pay attention, tell the truth, and never get attached to the results (and for listening to the voicemails from the Bilts’ late-night phone calls). There are several people in the graduate student body here who have been particularly helpful in work and in life over these past years who I’d like to thank: Daniel Wilkenfeld, Christa Johnson, Jamie Fritz, Kira Wedin, Daniel Olson, and Keren Wilson. A special shoutout goes to Jerilyn Tinio. I don’t know that this would have happened without you, and I sure am glad we’ve gone through this together. Kitty, you’ve been a great work buddy and a reliable paperweight. It’s distracting when you attack my pencil while I’m trying to take notes, but the companionship is worth it. iii To all my family and friends, I thank you for the love and support over the past seven years. Thanks to the McCarthys for so warmly welcoming me into your family and providing me with all the good will I could ask for. Thanks also to my stepmother Pat for always being ready to talk, to visit, and to be there for me. Your constant support has meant so much over the years, but especially over these past few months. When you have two incredibly accomplished, impressive people for parents, it’s intimidating to try and follow in their footsteps. So I’m incredibly lucky that my parents have always encouraged me to carve out my own path instead. Thanks to Mom and Dad for both modeling what it’s like to live a full life, and for teaching me that what matters most of all in what you do is trying to put something good for others into the world. Even during the most stressful or demanding periods of this process, it was harder than I anticipated for me to become completely unmoored. Such stability can be credited entirely to the support and care of my fiancé Mike. The kindness, patience, strength, and love you provided over this past year can’t really be explained, but anyone lucky enough to know you already understands. Thank you for the joy and love you have brought to my life. I’m so happy that our partnership will continue for many years to come. iv Vita June 2007……………………………………………………….Roland Park Country School May 2011……………………………………… ………………..B.A. Philosophy and Dance, Franklin and Marshall College May 2014………………………………………..M.A. Philosophy, The Ohio State University September 2011 to present……………Graduate Teaching Associate, Department of Philosophy, The Ohio State University August 2015- July 2016………………………………………Graduate Administrative Associate, Center for Ethics and Human Values, The Ohio State University Fields of Study Major Field: Philosophy Areas of Specialization: Medical Ethics, Political Philosophy v Table of Contents Abstract…………………………………………………………………………………………...i Acknowledgments…………………………………………………………………………….....iii Vita…………………………………………………………………………………………….....v List of Tables…………………………………………………………………………………….ix Chapter 1: The Vision of Medical Partnership……………………………………………………1 I. Abandoning Paternalism……………………………………………………………...........5 II. The Rise of Self-Determination……………………………………………………….....10 III. The Informative Model……………………………………………………………….....18 IV. The Doctor-Patient Partnership………………………………………………………....24 V. Partnership vs. Self-Determination……………………………………………………....27 V. What Does Achieving Partnership Take?..........................................................................30 Chapter 2: Can Partnership and Self-Determination Be Reconciled?...........................................35 I. Partnership and Disagreement…………………………………………………………….39 II. Does Deliberation Violate Self-Determination?................................................................47 a. The Argument from Rational Control…………………………………...................48 b. The Argument from Limited Control……………………………………………....53 III. The Value of Promoting Autonomy?...............................................................................56 IV. The Value of Promoting Well-Being?..............................................................................66 vi V. Doctors: Partners or Contractors?....................................................................................75 VI. The Challenge to Partnership………………………………………………...................82 Chapter 3: The Value of Health Advocacy……………………………………………………...85 I. The Doctor as Contractor………………………………………………………………...88 II. The Doctor as Patient Health Advocate…………………………………………………93 III. The Value of Patient Health Advocacy……………………………………………….102 IV. Does Health Advocacy Reintroduce Paternalism?........................................................111 V. The Potential Instability of Patient Authority………………………………………….118 Chapter 4: A Non-Domination Approach to Patient Authority………………………………..120 I. Preserving Anti-Paternalism…………………………………………………………….123 II. The Non-Domination Approach to Rejecting Paternalism…………………………….127 III. Non-Domination and Patient Authority………………………………………………142 a. Against the Institutional Model……………………………………………………144 b. In Favor of Deference to Patients………………………………………………….151 IV. The (Ir)Relevance