Lawyers, not doctors, police informed consent doctrine and draft forms that supposedly both insulate professionals from liability and protect and inform patients. These contradictory goals often produce Frankenstein-like documents that recite laundry lists of risks and side effects, allowing clinics to prove that providers have warned patients—of everything. Understood for what it is—a legal process designed to both educate patients and shield doctors from liability—informed-consent-as-ritual likely breeds cynicism, not trust, encouraging patients to put more stock in providers’ discussions of risk. While consent conversations might include the same disclosures as consent forms, they can also be tailored to individual patient needs and relational nuances.
And not all forms of trust are equivalent; interpersonal trust tends to run much deeper than the shallower (but perhaps more visible) institutional forms of trust shored up by legal protections. Thick trust—grounded in strong and supportive personal relationships—can be distinguished from thin trust—a social form of trust that depends on “shared social network and expectations of reciprocity.”12 Thick trust is what prompts me to donate a kidney to save a friend’s life; thin trust allows me to permit the surgeon I have just met to extract the kidney. Thin trust, in turn, is different from institutional trust, like that in government or hospitals.13
Most patients already place trust in their providers because they are socialized to believe that medical professionals play healing and caring roles. Though consent documents can reinforce this trust, it is different from the thick trust that sustains healthy provider-patient relationships. More personal and robust, this thick trust likely replaces and eclipses the thin trust anchored by consent documents. Thus, in patients’ eyes, strong provider-patient relationships and growing trust in treatment teams can weaken consent forms’ significance. Documents are only one part of the consent process, which extends throughout treatment and incorporates many other aids, including conversations. Patients may therefore be skeptical of consent forms, yet retain faith in the process.
In essence, infertility-related emotions and provider-patient relationships coexist in largely unregulated, heavily commodified, and profoundly intimate environments. Both create dilemmas that may require legal intervention and provide frameworks that structure and constrain solutions. Emotions and conceptive desires affect patient vulnerability, but also motivate patients to form effective relationships with doctors and other fertility clinic personnel. Though these relationships are very much business associations, neither party usually experiences them as distanced or arms-length. And the more interpersonally successful these relationships are, the more problematic they may be for purposes of informed-consent-as-ritual.
This creates two paradoxes. First, although informed consent doctrine supposedly facilitates trust by outlining what providers can do to patients, it also seeds distrust, because of the need to set these boundaries in the first place. This distrust is communicated more explicitly in consent forms. Second, the deeper the interpersonal bond and trust between provider and patient when consent forms are signed, the more likely patients are to discount these documents as routine or ritualistic. And provider-patient relationships are probably quite strong by then, since IVF consent forms are usually signed late in the game, after a couple has committed emotionally and financially to undergoing IVF. Thus, informed consent (as conventionally understood) in effect harbors a viper in its bosom: the biggest threat to informed consent may not be poor patient comprehension or failure to read consent documents, but the successful doctor-patient relationship this doctrine ostensibly exists to promote.
To date, these dynamics have gone largely unrecognized; critics have instead focused on other consent problems like poor reading, comprehension, and recall. Taking Baby Steps explores their dimensions, inviting readers into the lived experience of receiving and providing in vitro fertilization (IVF), privileging the voices of 478 participants, including 127 interviewed patients, 267 surveyed patients, and 84 professionals: doctors, nurses, clinic staff, and mental health experts. It seeks to understand how men and women undergoing fertility treatments make decisions, how medical professionals frame available choices, and how doctor-patient, patient-family, and family-clinic relationships contribute to the quality of reproductive decision making. In doing so, this book places great emphasis on emotions and their roles in guiding both patients’ conduct and relational dynamics between providers and patients. Effective decision making unites reason and emotion, and relationships, including profoundly emotional ones, affect individuals’ ability to weigh alternatives and reach reasoned conclusions.
Part 1 of this book focuses on infertility-related emotions, from women’s first inklings that something might be amiss to the moment they pass through a fertility clinic’s doors. Chapter 1 chronicles infertility’s emotional contours and their effects on friendly and romantic relationships, chapter 2 explicates the complicated politics of desperation that underlie many popular stereotypes of individuals struggling with infertility, and chapter 3 examines how infertility-related emotions can both help and hinder treatment goals. Part 2 follows individuals into the fertility clinic as they become patients, documenting the concerns they and their providers encounter. Chapter 4 explores how and when individuals decide to seek fertility treatment, how they choose a provider, what they expect from treatment experiences, and how they approach treatment relationships. Chapters 5 and 6 address patients’ and providers’ perspectives on treatment relationships, including stereotypes of ideal and difficult patients, whether patients should be assertive or aggressive, the importance of trust and bedside manner, how emotions affect decision making, and what happens when one party doesn’t meet the other’s expectations. Part 3 turns to the more bounded ritual event of signing forms, exploring how both emotions and provider-patient relationships influence informed consent. Chapter 7 discusses how bureaucracy influences the entire consent project, in particular treatment relationships, and chapter 8 delves into the experience of informed consent, explicating how emotions, rituals, and relationships affect providers’ and patients’ perspectives on informed consent interactions, protections, and tools. Finally, chapter 9 explains why these factors prompt patients to view IVF consent forms differently from other documents requiring them to select embryo dispositions in the event of their deaths or divorce. This book concludes by suggesting ways to reenvision the informed consent project.
All three parts of this book engage popular infertility stereotypes that have very real effects on individuals’ decision-making behaviors. Part 1 tackles emotion-related stereotypes like the “desperate” woman, explaining how real women experience infertility-related emotions and their reactions to this politicized portrayal. Part 2 addresses the related stereotype of the “difficult” patient, usually the desperate woman in treatment, who becomes overly deferential or aggressive in clinical settings. Seeking to earn providers’ approval, many patients try to avoid this stereotype, adopting “ideal” behaviors like being informed, responsive, cooperative, and professional. Finally, part 3 confronts the stereotype of the “detached” patient, who wants to proceed with IVF while bypassing informed-consent-as-ritual or other critical treatment steps. To avoid this stereotype, patients emphasize that they read and understand consent materials, and strive to appear knowledgeable in provider conversations. Thus, although these stereotypes don’t match most individuals’ treatment experiences, they still exert a strong, stressful, and often destructive influence upon patients’ and professionals’ expectations, presenting yet another complication they must overcome. And overcome it they do, through resilience, creativity, and support from their reproductive medical providers.
PART ONE