Читать книгу Taking Baby Steps - Jody Lyneé Madeira - Страница 8

Prologue

Few topics are as compelling or contentious as how we create families—including reproductive decisions involving adoption, abortion, and reproductive medicine. Assisted reproductive technologies like intrauterine insemination (IUI), in vitro fertilization (IVF), and surrogacy generate particular controversy. Just as we make assumptions about many other “hot” issues, we often assume that people actually make or should make reproductive decisions in certain ways, or to achieve certain outcomes. One of our conventional assumptions is that emotions overwhelm patients and often hamper decision making. From this vantage point, emotions allegedly make patients more vulnerable, and it’s dubious whether they can be trusted to make family-building decisions. Another conventional assumption is that doctors’ profit incentives negatively affect their treatment decisions, prompting uncertainty over whether medical professionals can be trusted to put patients over paychecks. Finally, we assume that informed consent doctrine and documentation provide adequate protection against both strong emotions and predatory providers. But there are two problems with these assumptions: we confuse them with the truth, and we’re often wrong. When we’re wrong in the reproductive context, our mistakes have grave consequences for millions.

Taking Baby Steps asks readers to rethink conventional assumptions about how patients and their medical professionals collaborate in conception, allowing hundreds of men, women, and reproductive experts to explain in their own words how they negotiate key stages within the infertility experience. It is about infertility’s associated emotions and stereotypes, and how they influence when and in what ways the public and professionals think about fertility treatment, decision making, and the meaning of consent. It is about the impact these emotions and choices have on friendships and marriages, how patients’ friends and family sometimes don’t understand or grow weary of discussing infertility. It is about how women in particular may face loneliness and stigma in the shadows of disempowering popular stereotypes of the “desperate” or “demanding” woman battling infertility. It is about women and men who turn to fertility professionals for emotional support as well as medical care, and about the enduring treatment partnerships they form that motivate patients to appear educated, cooperative, and in control, and spur doctors to inspire and be worthy of patients’ trust.

Finally, it is about the legal framework that protects both doctors and patients addressing infertility. Relationships that progress to treatment trigger the safeguards of informed consent, a ritual involving documentation, explanations of procedures and risks, agreement to a plan of action, and signatures. Though experts believe (at least tacitly) that consent documentation diminishes medical paternalism and exploitation, patients experience it as legalistic, bureaucratic, generic, and cold; they prefer informative and personal conversations with providers. Though the vast majority of patients affirm they have read and understood these consent forms, they dislike forms that apparently protect doctors over patients. Instead, they find solace in the broader treatment relationships in which the acts of informing and consenting take place. Thus, this book attempts to turn the infertility experience inside out, exploring how women, men, and fertility professionals together negotiate infertility’s rocky terrain and navigate the personal, medical, and ethical minefields inherent in creating life and building families—and move forward in the event of defeat.

•••

I’ve experienced these treatment relationships and informed consent processes—and unexpected consequences—firsthand.

It was early (very early!) on a morning in mid-March 2007, a few weeks after my partner, Matt, and I had undergone IVF and transferred back three three-day-old embryos. In a fertility clinic on the outskirts of a major northeastern metropolis, I reclined on an examination chair resembling a dentist’s, only with hair-raising equipment at my feet. In the sonographer’s hands, an ultrasound wand shifted back and forth like an automotive stick shift, seemingly going from first to second gear, then back to first again, looking for the pregnancy that bloodwork had confirmed two weeks before. First and second gear were both fine with me—I feared being stuck in neutral, or, now that I was finally pregnant, being thrown abruptly into reverse.

“I see two heartbeats,” enthused the ultrasound technician from somewhere near my feet.

This revelation caused my heart to temporarily relocate to my throat.

“I see another gestational sac down here, but there’s nothing in it,” the sonographer continued.

“What does that mean?” I asked.

“Oh, that happens when one embryo starts to implant in the uterine lining, then stops developing,” the sonographer explained. “It’s quite common.”

“Twins!” I enthused to Matt some moments later, after I’d been reunited with my clothing. We pored over the ultrasound pictures we’d received. Each showed what looked like three black birds’ eggs: gestational sacs, two of which had strange lines we’d been told were “fetal poles,” the first measurements of our nascent offspring. The third was a black hole, a realm of mystery that, honestly, we ignored in our obsession with our twins. I still couldn’t believe I was pregnant, but at the same time wasn’t surprised to be expecting multiples. One week after our embryo transfer, a home pregnancy test had glowed positive seconds after I took it, and I’d been feeling breathless and dizzy for two weeks. Two weeks post-transfer, my fertility clinic administered a blood pregnancy test measuring the level of hCG, or human chorionic gonadotropin, the “pregnancy hormone” that embryonic cells generate after the embryo implants within the rich uterine lining. My results were extremely high; while the clinic expected a viable pregnancy’s hCG levels to exceed 100 mIU/ml, mine had rocketed to 725 mIU/ml.

“Why don’t you go in to work, hon?” I said to Matt, who had a long trek back to his office. “The important part was the ultrasound—I’ll stay here to meet with the doctor and go in to the city after that.”

“Are you sure?” he asked. I nodded.

“Okay,” he agreed. After a final hug, he left the office, and I sank into a chair in the waiting room and stared in joyful disbelief at my ultrasound pictures until I was called back to see my reproductive endocrinologist, or RE—a fertility specialist. Though I calmly seated myself before his desk, I really wanted to throw myself into his arms.

“Sooooo …” intoned my RE. I beamed in anticipation.

“Twins!” I exclaimed, awaiting his response.

But my RE’s words were far from the congratulatory statement I’d been expecting. “Triplets, actually. Two viable fraternal twin embryos, and a third gestational sac. We’ll have to keep a close eye on that one.”

•••

When Matt and I first considered having children, we never imagined needing fertility treatment. But how many of us do? I knew my mother had had trouble conceiving me, enduring several miscarriages. But I was healthy, in my late twenties, and in great shape. Yet, here I was. The problem wasn’t getting pregnant. In fact, my problems began after I miscarried my first pregnancy shortly before Christmas in 2005. When bleeding signaled that our baby was endangered—and our hopes and joy along with it—I was frantic, especially after learning there was nothing to be done. Miscarrying. Mis-carrying. That word cruelly intimated I’d done something wrong, like negligently jostling my child’s nascent form or abandoning it. It suggested I was somehow a bad mother before I even gave birth. That day, Matt found me sobbing as if the world was ending—which it was, in a sense, for our poor baby, who had never seen it and now never would.

The following year, each month was another infertility battle, and I was getting worried about losing the war. Having miscarried my baby, I guess I misplaced my period as well, because I couldn’t menstruate. No unfertilized egg burst out of its watery ovarian home and bumbled down my fallopian tube each month, triggering a shedding of uterine lining. Medical tests confirmed that I wasn’t ovulating, but couldn’t explain why. But without eggs, there couldn’t be a pregnancy. I became increasingly cynical, furious that my body had failed me, my baby, and my partner. My world seemed newly populated by pregnant women and unwanted pregnancies. I dreaded trips to my OB/GYN, who merely reassured me time and again that miscarriages were “perfectly normal” and that I should “just relax.” Ha.

Spring and summer came and went with no period to end my sentence of barrenness. My physician finally prescribed Clomid to stimulate ovulation, but the only thing it awakened was my inner Mr. Hyde, whom my more kindly Dr. Jekyll struggled to subdue. The most trifling things drove me to the refuge of our walk-in closet, where I would scream into a pile of sweaters.

Per our OB/GYN’s orders, we waited one year before seeing an RE. Because our particular northeastern state mandated that health insurance cover infertility treatments, our fertility care would be paid for, but with two caveats: patients without male factor infertility had to complete three rounds of intrauterine insemination (IUI) before undergoing IVF, and there was a lifetime cap of three IVF cycles. Before my long-awaited Fertility Clinic Consultation (believe me, it merited capital letters), I solicited friends’ recommendations on clinics and REs, researched clinic success rates, made an appointment with the best I could find, and waited.

I’ll skip over much of what happened during the first few months of treatment, when I was on a merry-go-round of tests and consultations: testing, bloodwork, provider conversations, followed by more testing, more bloodwork, more conversations. Matt and I dutifully proceeded through three IUIs, accompanied by lengthy consent documents and shopping-spree-sized bags of fertility drugs, leaving trails of discarded syringe needles in our wake. We completed our third IUI early on Christmas morning, inventing some lame explanation for our absence to our holiday houseguests. When January 2007 brought confirmation that there would be no New Year’s baby-to-be, I was more than ready to move on to IVF.

We began our first IVF cycle in February. The IVF regimen was almost identical to the IUI protocol, but with closer monitoring. Our egg retrieval proved successful, netting twenty-one mature eggs. The night of retrieval, I pictured those eggs frolicking with sperm in their petri dishes and awaited the next day’s fertilization report. But our nurse delivered devastating news: only five embryos had fertilized, and we’d try to transfer the survivors back into my uterus on day 3 instead of day 5, per clinic policy. Crestfallen, I thanked the nurse and hung up. The expected fertilization rate for IVF embryos was approximately 75%; my rate had been closer to 25%. Sure this first cycle was a bust, I sobbed on Matt’s shoulder. He tried to reassure me, reminding me five embryos gave us an excellent chance of having one baby. But I wasn’t consoled; fertility math is notoriously unpredictable. Confident I knew better (I’d done a ton of Internet research, after all), I expected the worst.

The next three days crawled by. We wouldn’t know how many embryos we had to transfer until that morning, and it was possible that all would stop dividing, leaving us with nothing. But our phone stayed mercifully quiet, and on the morning of transfer we drove to the clinic, wondering what we’d find. When we were ushered back into the surgical prep area, we saw what a difference three days could make.

On day three, viable embryos are six to ten cells in size. Embryos are graded according to their quality on a scale from A to D or 1 to 4, and are also evaluated for fragmentation, or how many portions of cells have broken off during their division. A high-quality embryo will have little to no fragmentation, and its cells will appear uniform in size. Any embryos that are not transferred are left to develop until day 5, and then, if they are still active, are frozen (or cryopreserved) for future use. We had two grade-A embryos and one grade-B, each with minimal fragmentation; two were eight-cell and the third had seven cells. One embryo, however, had an “M” in front of it; a query to the embryologist revealed this meant “mutation,” conjuring up images of embryonic X-men invading my uterus. Seeing my look of consternation, the embryologist explained, “It means the embryo is dividing more rapidly than we’d expect.”

But three embryos created another problem: we’d agreed beforehand to transfer only two embryos, and we didn’t want to freeze a third embryo by itself, or endure a second IVF cycle. Sensing my hesitation, the embryologist pointed to the third embryo marked “M” and quipped, “This one might be happier in you than outside of you.” It was ridiculous to anthropomorphize embryos as if they could be happy or sad, or indeed feel anything. Yet, that remark somehow resonated with me; part of me embraced the idea that M needed me. My first act of maternal love could be transferring it, rather than dooming it to a cold and uncertain cryopreserved future. And we only had a few more moments to make this decision.

“What are the odds of triplets if we transfer three instead of two?” I asked.

“Oh, about 3%,” said the attending physician.

To me, those sounded like pretty good odds, given the likelihood that M wouldn’t implant. That made the decision easier. Deliberately having triplets seemed irresponsible; dooming one of the three seemed heartless. Transferring all three and allowing nature (or God) to decide felt much better. The doctor had just said the odds that all three would implant were miniscule, and we were still not convinced we could get pregnant at all.

“Let’s do it,” I said.

•••

Back in the RE’s office, I shook my head in disbelief.

“Triplets?”

“Not a viable triplet pregnancy yet, but yes, you have three gestational sacs.”

A stunned silence ensued. Despite transferring three embryos, I had never considered such a possibility.

“Would you ever consider selective reduction?” my RE asked.

“I suppose so,” I responded, though I didn’t even know what that meant. (Selective reduction is a procedure terminating one or more of the fetuses at approximately twelve weeks into the pregnancy.)

After I left the RE’s office, I made a very memorable phone call to Matt.

“Hey, honey? It’s not twins. It might be triplets.”

One week later, after an episode of bleeding and an emergency ultrasound, a technician reassured me I was still pregnant—in fact, very much so. For now we had three heartbeats—and a viable triplet pregnancy.

•••

Despite our initial shock, we didn’t undergo selective reduction. Though I believe my RE felt I made the wrong decision, he deferred to our decision and remained supportive. He explained the risks we faced in carrying a “higher-order multiple” gestation. He even set up an appointment with Dr. Michael Evans, the New York physician who had pioneered the reduction procedure. But after seeing our three wiggly lima beans via ultrasound and contemplating yet another fertility-related procedure, I knew I couldn’t go through with the reduction. Quite honestly, after three IUIs and one IVF cycle, I just wanted to be left alone.

I strongly believe everyone in this position must make this decision for themselves, according to what they feel is right. I’m thankful for this freedom. I also feel we couldn’t have anticipated that all three embryos would implant and thrive, and so attach no blame to my RE, his staff, or for that matter, to us. We had researched IVF thoroughly and repeatedly read over every consent form that we received, and our RE ensured we understood what we read. So much of fertility treatment is still a black box, making reproductive medicine as much an art as a science. Nor was a single-embryo transfer a customary medical practice in 2007, at least for a three-day transfer; transfers ideally occur at the five-day mark with more developed embryos called blastocysts, hulking brutes hundreds of cells in size.

•••

Our triplets—three boys—were born at exactly thirty-three weeks on September 15, 2007, after I’d been on bed rest since the twenty-fourth week of pregnancy, thanks to an “incompetent cervix” (a preposterous term) that was reluctant to support a triplet pregnancy. Nonetheless, modern medicine handed us three breathing, bleating, squirming newborns to bring home after three weeks in the neonatal intensive care unit, or NICU. I felt simultaneously giddy and guilty; many of the other pregnant triplet moms I met instead brought home heartbreak.

Our IVF cycle and treatment decisions have had lasting effects on me, my marriage, my career, and every other aspect of my life. That fateful phrase approving the embryo transfer—“Let’s do it”—has come to mean an affirmation of life, love, and a willingness to encounter the unknown. As a result of making this affirmation, I also developed a strong and enduring appreciation and respect for REs and high-risk obstetricians, and a fascination with how medical decisions are made, which led me to incorporate reproductive technology and its legal consequences into my own teaching as a law professor. While preparing lecture materials for a related course, I was stunned that some experts suggested that women and couples experiencing infertility were “desperate” to conceive, implying that emotion imperiled their capacity to consent to treatment. Others suggested that fertility professionals exploited their vulnerable patients. But none of these characterizations matched my own experiences or those of other women I knew.

It wasn’t that I hadn’t been desperate—of course I had. It is nigh impossible to miscarry a wanted pregnancy and experience subsequent infertility without some feelings of anxiety, anguish, hopelessness, and despair. Instead, I suspected that experts’ definitions of desperation didn’t match mine. Far from the stereotypical desperation experience of paralysis and powerlessness, my emotions galvanized me, pushing me to seek answers, research treatments and providers, and speak to others about their experiences. Other women I had met described similar experiences.

The more I examined these characterizations of infertility and affected individuals, the more curious about their accuracy I became. Mainstream stereotypes of women with infertility depict a conglomerate of broken souls: selfish older career women, whiny and annoying mothers of multiples on reality television, and sensational stories about a woman on public assistance who birthed IVF octuplets, adding to a brood of six—a woman who is often denied her name—Nadya Suleman—and referred to as “Octomom.” I didn’t see my own face in that crowd, or those of my friends. These images increased my determination to investigate their accuracy, if necessary replacing them with fresher, more accurate and diverse portrayals of what infertility was, whom it affected, and how it changed lives. I wanted to destigmatize, even normalize infertility and its treatment, moving it from its social margins to the center of mainstream discussions about family and reproduction. In an echo of women who sought the right to terminate their pregnancies, I wanted to be unapologetic about my own choice to initiate one through reproductive medicine. Thus, in addition to triplets, my IVF cycle sowed the seeds of this research project, of which this book is the fruit.

•••

This book begins with my own story, but focuses primarily on those of others, representing the diversity of experiences and perspectives that both enriches and challenges those who experience and explore this subject. Conceiving a child, watching it grow in the womb, and ultimately giving birth can rank among life’s wonders. For many, pregnancy simply happens, often in unplanned or unexpected ways. But for others, an inability to conceive creates anxiety, frustration, and sometimes despair, and for centuries, people simply had to live with those emotions. Since the birth of Louise Brown in 1978—the first baby born through IVF—the reproductive medicine industry has flourished, injecting hope into reproductive attempts—hope that one’s failure to conceive can be overcome, hope that it just requires sufficient determination, money, and medical skill.

This hope is increasingly in demand as more women defer childbearing. And these technologies, and the hope they create, are subject to few safeguards. In America, the reproductive medicine industry is still largely unregulated, and there are few federal or state restrictions on embryo transfer or cryopreservation.¹ Though many clinics belong to professional associations like the Society for Assisted Reproductive Technology (SART) or the American Society for Reproductive Medicine (ASRM) and agree to follow their clinical and ethical guidelines, these guidelines lack legal effect, with minimal consequences for noncompliance. If there are few policy incentives to regulate ART, there are even fewer motives for popular culture to accurately represent its patients. As women become more likely to defer childbearing, more celebrities, media characters, and public personas—from Celine Dion to Friends’ Monica and Chandler, from Kate Gosselin to Nadya Suleman and her octuplets—represent what fertility treatments might offer. These representations matter to individuals seeking medical intervention to achieve motherhood, whether they’re professionals who have surmounted every other life challenge, or women whose primary ambition has always been starting a family.

Although IVF is more affordable and available to a wider range of women (hence the importance of this book), it is not right for everyone. Deciding to try IVF involves a series of potentially gut-wrenching decisions, starting with the question of whether to try at all. IVF is expensive. The initial consultation often costs hundreds of dollars, and the first round of treatment will amount, on average, to $8,158, with medications costing an additional $3,000 to $5,000.² Insurance likely won’t cover many expenses, even in the fifteen states mandating insurance coverage,³ and out-of-pocket costs may be high. Deciding to undergo IVF may therefore compel people to mortgage a house, max out credit cards, or use savings for a down payment on medical treatments instead. It may involve going hat in hand to relatives, describing reproductive troubles and then asking to borrow money. It may mean postponing other dreams—starting a business, switching jobs, or reaching the point where monthly bills don’t produce anxiety. And it may mean mortgaging the future, using funds intended for college tuition or retirement.

Treatment decisions also include which fertility interventions to pursue and what risks are acceptable—and these choices are influenced by informed consent disclosures. These treatments may involve surgery, drug regimens with potentially serious risks for mother or child, and novel procedures with uncertain consequences. Even routine treatments and medications have side effects; treatments may entail discomfort and sick leave, and medications alter hormone levels, change moods, and unsettle emotions. Some doctors recommend procedures of undetermined safety and efficacy. And there are no guarantees that these efforts will yield the longed-for pregnancy or live-born, healthy child.

Even standard treatments may pose difficult ethical choices. IVF increases the odds of getting pregnant with twins, triplets, or more and having to decide whether to undergo selective reduction. Some religions like Catholicism oppose IVF altogether; others mandate that believers follow guidelines, like using all fertilized embryos. Some couples who have no objection to producing embryos in a lab find it difficult to choose among those they create, or object to letting a doctor choose for them. Others might find that they can’t reproduce without using donor eggs or sperm, meaning any resulting child is genetically related to only one of its intended parents. Then there’s the question of what to do with surplus frozen embryos: should they be destroyed, transferred to another couple for reproductive purposes, donated to research, or frozen indefinitely?

Working through these choices raises profound questions about decision-making capacity, encompassing not only a patient’s ability to choose appropriate treatment, but the nature of the industry guiding that choice. Doctors providing emergency services or advising cancer patients may not know the cost of recommended treatments or payment mechanics. But fertility specialists can’t afford to ignore such matters. Most patients pay out of pocket, and Congress bars the use of federal research dollars for the very procedures that would most advance reproductive treatments. The reproductive medicine industry has been called the “Wild West” of the medical profession and, while not all criticisms are deserved, clinic professionals need to compete for patients and must remain cognizant of what their clients are willing and able to pay.

At its best, therefore, the world of reproductive medicine brings together distraught patients and business-minded professionals. It is little wonder that some 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 are hybrids of commercial and personal dynamics. While these relationships are founded upon trust and communication, their goal—fertility treatment—carries both benefits and risks, which in turn trigger a need for the informed consent project. Trust within these professional relationships depends on effective communication—something that most consent forms don’t achieve. But the adversarial and litigious winds that blow informed-consent-as-ritual into treatment relationships, and its distanced and clinical language, might seem rude and unwelcome intrusions into the interpersonal warmth and hope that treatment relationships kindle.

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.