Taking Baby Steps. Jody Lyneé Madeira

      UNIVERSITY OF CALIFORNIA PRESS

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      University of California Press

      Oakland, California

      © 2018 by The Regents of the University of California

      Library of Congress Cataloging-in-Publication Data

      Names: Madeira, Jody Lyneé, author.

      Title: Taking baby steps : how patients and fertility clinics collaborate in conception / Jody Lyneé Madeira.

      Description: Oakland, California : University of California Press, [2018] | Includes bibliographical references and index. |

      Identifiers: LCCN 2017030457 (print) | LCCN 2017033914 (ebook) | ISBN 9780520966314 (ebook) | ISBN 9780520293045 (cloth : alk. paper) | ISBN 9780520293052 (pbk. : alk. paper)

      Subjects: LCSH: Infertility—Patients—Counseling of—Moral and ethical aspects. | Fertility clinics—Evaluation. | Infertility—Alternative treatment. | Infertility—Psychological aspects. | Patient education. | Human reproductive technology. | Conception.

      Classification: LCC RC889 (ebook) | LCC RC889 .M33 2018 (print) | DDC 616.6/92—dc23

      LC record available at https://lccn.loc.gov/2017030457

      Manufactured in the United States of America

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      Contents

       List of Illustrations

       Acknowledgments

       Prologue

       PART ONE. INFERTILITY AS AN EMOTIONAL EXPERIENCE

      1.Consent and Sensibility: Emotions, Decision Making, and Informed Consent in Reproductive Medicine

      2.“The Heart Wants What the Heart Wants”: Patients’ and Providers’ Reflections on Desperation

      3.Conceptive Catch-22s: The Benefits and Burdens of Infertility Emotions

       PART TWO. (RE)PRODUCTIVE TREATMENT RELATIONSHIPS: FROM CHOOSING A PROVIDER TO COLLABORATING IN CONCEPTION

      4.Off to See the Wizard: On the Road to Treatment

      5.Being Patient: Patients’ Perspectives on Treatment Relationships

      6.Doctoring Hope: Providers’ Perspectives on Treatment Relationships

       PART THREE. DOCUMENTING THE INFORMED CONSENT EXPERIENCE

      7.Is Informed Consent in Reproductive Medicine in Critical Condition?

      8.Filling in the Blanks: How Patients and Providers Experience Informed Consent

      9.For Forms’ Sake: Comparing IVF and Embryo Disposition Forms

       Conclusion: Thinking outside the Signature Box

       Appendix: Methodology

       Notes

       Glossary of Common Fertility Terms

       Index

Illustrations

      FIGURES

      1.Expedition Emotions: Qualitative Interviews

      2.Expedition Emotions: Quantitative Surveys

      3.How Men Feel across an IVF Cycle, Qualitative Interviews

      4.How Women Feel across an IVF Cycle, Qualitative Interviews

      5.Patients’ Perceptions of Their “Desperation”

      6.Do Fertility Patients’ Mental and Emotional States Affect Treatment Success?

      7.Patients’ Reports about Reading the Entire IVF and Embryo Disposition (ED) Forms

      8.Patients’ Reports on How Carefully They Read the IVF and Embryo Disposition (ED) Forms

      9.Patients’ Reports on How Understandable They Found the IVF and Embryo Disposition (ED) Forms

      10.Patients’ Reports of Whether They Were Surprised by the Information in the IVF and Embryo Disposition (ED) Forms

      TABLE

      1.Characteristics of Patients Surveyed and Interviewed

Acknowledgments

      My thanks and appreciation extend to so many people who have encouraged me, listened to me, and provided invaluable advice. Chief among them is my husband, Matt, and our children for always being there with love, understanding, patience, hugs, and back rubs during this project. They understand it is never possible to “do it all” well.

      I’m deeply indebted to the women and men who took the time to sit down to complete a lengthy survey or telephone interview, to return to emotionally difficult subjects, issues some hadn’t thought about for a long time, details that for others were a hell they endured every day. I’ve lived with their stories for several years now—accounts that still warm and chill me, make me laugh and make me cry, and fill me with gratitude for their experience and willingness to share. I’m also grateful to the reproductive medicine professionals—physicians, nurses, administrators, staff members—who spoke to me over the telephone or within a quiet room in their clinics. Their openness and interest in this project reveals their commitment to their patients and to reproductive health.

      This project would never have come to fruition without several organizations’ assistance. Projects like this take a great deal of time; the Federalist Society’s generous award of a Searle Young Legal Scholar’s Research Fellowship provided crucial interviewing time. Financing this research would have been very difficult without a substantial research grant from the Indiana University Faculty Research Support program. The Indiana University Maurer School of Law provided resources to hire additional research assistants. I am also grateful to organizations like RESOLVE (the National Infertility Association), the National Organization of Mothers of Twins Clubs, and clinics that allowed me access to forums and wall space. These organizations’ tireless advocacy and the relationships they facilitate help individuals connect over reproductive issues, give voice to important matters, and effect needed reforms.

      Finally,