Taking Baby Steps. Jody Lyneé Madeira

critics, particularly those who counsel against deference to professional expertise, worry about women’s exploitation. Will those who can’t become pregnant on their own experience such despair and desperation that they become easy marks for the unscrupulous? Should someone else make certain choices for them, like how many IVF cycles they can afford, or what procedures offer the best prospects for success? Other critics direct their skepticism at patients, counseling hesitation before allowing an overambitious career woman access to a gestational carrier she might try to control, and worrying that a “desperate” woman might agree to marginal treatments that bankrupt her family or endanger her child’s health. Critics on both sides of the political spectrum often draw upon these stereotypes to support limited access to reproductive procedures, reflecting deep-seated cultural wariness over trusting women to make good decisions about their bodies and reproductive capacities.

      Here is where informed consent comes into play, in all its many incarnations. To safeguard patients from predatory providers, courts and lawmakers have created this legal doctrine to require medical providers to tell patients about a proposed treatment’s material risks, benefits, and side effects, as well as other treatment options, before obtaining their consent.⁴ But in practice, informed consent has acquired a much broader meaning, encompassing not just consent forms but conversations. The informed consent project is connected to the four moral principles of medical ethics: autonomy (respect for persons), beneficence (do good), nonmaleficence (“first, do not harm”), and justice (be fair).⁵ Done correctly, consent may protect physicians from legal liability, but it also promotes patient autonomy, encourages the development of safe and high-quality procedures, helps to make care patient-centered, and improves patient-physician relationships. Receiving information may even be therapeutic for patients, conferring a sense of control, although some patients may find information emotionally threatening because of its content or ambiguity.⁶ Thus, informed consent comes in several nested layers: informed-consent-as-ritual, informed-consent-as-relationship, and their combination, the informed consent project. Informed-consent-as-ritual is consent-as-bureaucratic-ritual, including the act of signing consent documents. Informed-consent-as-relationship represents consent-as-treatment-relationship, including interpersonal consent encounters. Together, informed-consent-as-relationship and informed-consent-as-ritual form the informed consent project, a merger of relationship and ritual. The informed consent project represents every potential consent purpose: a complex interpersonal encounter, a clinical process, a legal doctrine, and an ethical imperative, all of which are affected by concerns of emotion, trust, and profit.

      Providers and patients often think of consent in these categories as well, as one provider stated,

      We’ve got informed consent for intrauterine insemination that’s like a page long that I don’t think I’ve ever discussed with a patient. It’s nonsense; they can go home and sleep with each other for crying out loud. There’s some circumstances in which the consent form is almost like a pro forma piece of bureaucratic paperwork, and there are other times when it’s really critical and real and deserves the respect and time… . I shouldn’t probably be allowed to distinguish … the bureaucratic [forms] from what’s real … but in fact I do. (Dr. Bret Sternberg)

      Here, Dr. Sternberg is distinguishing informed-consent-as-ritual—“bureaucratic paperwork”—from informed-consent-as-relationship—what’s “critical and real.” Moreover, his willingness to forego an IUI consent in a clinical situation where he believes it’s irrelevant illustrates how providers can use informal treatment relationships to make informed-consent-as-ritual more meaningful, improving the entire consent project.

      Informed-consent-as-ritual is legally and ethically required; informed-consent-as-relationship is not. But mandates that informed-consent-as-ritual must occur in certain ways that impose distance between patients and providers or that harm the treatment relationship within informed-consent-as-relationship undermine the entire project.

      Informed-consent-as-relationship and informed-consent-as-ritual are both integral to a successful informed consent project. Without the trust and interaction characteristic of healthy treatment relationships, patients will likely dismiss consent tools, including documents, as bureaucratic, untrustworthy, and too generalized. But the consent forms, the consent ritual, and the signature requirement create the necessary opportunities and incentives for consent interactions to occur. Informed-consent-as-relationship humanizes and individualizes the consent project; informed-consent-as-ritual keeps it orderly and official.

      According to patients, informed-consent-as-relationship begins far earlier than signing consent forms—often when they began to research infertility, during their first consultation, or when they commit to IVF or pay for a cycle, demonstrating the connection between consent and treatment relationships. And it lasts until the termination of treatment. But informed-consent-as-ritual typically occurs in a more predictable, focused, and short sequence. A patient is first given information, usually within a document, that describes material information about a treatment method, with or without an explanatory conversation with a care provider. Second, the patient signs a form giving consent to this treatment. Ideally, before signing, the patient can ask questions or request changes to treatment procedures, though emergency circumstances curtail time for reading forms and asking questions. Unfortunately, this traditional consent process often fails to significantly improve patients’ understanding, so that some may consent to treatment without being informed, undermining autonomy and exposing care providers to legal liability. Patients may find forms overwhelming and may believe they protect doctors at patients’ expense.

      Most professionals take a broader view of the informed consent project, extending far beyond legalities to ethics, material information, what the consent experience is like, and why consent is essential, emphasizing professional responsibilities, patients’ corresponding obligations, and the interaction between them. They regard informed consent as an umbrella term incorporating several behaviors and concepts, including conversation, patient education, personal capacities for explaining and understanding consent information, and evaluating these capacities.

      Providers frequently regard informed-consent-as-ritual as the medical equivalent of Santa Claus or the Tooth Fairy—something that doesn’t exist. Instead, they presuppose that patients generally don’t read forms, that forms are largely unintelligible, and that documentation exists to satisfy a sue-happy society, not safeguard patient autonomy. Medical professionals have described consent forms as “make-believe papers,”⁷ mere “rationality badges” that reassure their audiences all is “under control.”⁸ They believe that something has become lost in translating informed consent principles from theory into practice. Critics assert that courts and medical scholars have typically emphasized consent’s legal aspects—the “obligation to make disclosure”—over the medical—the “meaning of informed consent,”⁹ transforming consent into a bulwark against malpractice litigation. This is the same as confusing informed-consent-as-ritual for the entire consent project. But morally, informed consent concerns patients’ autonomous choices, not professionals’ liability for nondisclosure.¹⁰ These dimensions of informed consent—legal doctrine, medical information, and moral viewpoint—are in tension, with profound implications for the consent experience, including undermining informed-consent-as-relationship.

      Taking Baby Steps disentangles this complex web of personal emotions, relationships, and legal and ethical requirements. It interrogates how patients and reproductive medical professionals work together to build families, using patients’ and fertility professionals’ experiences and reflections upon emotions, decision making, and interpersonal relationships, against a backdrop of social norms, cultural attitudes, and market forces.¹¹ Their observations teach us how emotions, healthy treatment relationships, and effective legal protections for patients and providers are inextricably connected. An inability to conceive creates intense emotions, and individuals seek outlets not only in existing social relationships with partners, friends and relatives, but also within reproductive medicine, with gynecologists, REs, and fertility clinic personnel. Provider-patient relationships might become especially important for patients who lack other social supports, see these matters as too private, or have friends who have become pregnant or turned away from endless fertility-related conversations. These treatment relationships