Taking Baby Steps. Jody Lyneé Madeira
private providers or university clinics provide most services. These entities (and often the REs they employ) must be aware of their practices’ bottom lines, lest they find themselves out of business.7 Clinics’ financial health depends on their ability to attract patients who can afford their services. Given these incentives to treat as many paying patients as they can handle, critics question these clinics’ motives, citing highly publicized abuses to demonstrate that reproductive medicine professionals are untrustworthy.8 Patients’ vulnerabilities compound these issues, making professionals’ profit motives seem especially dangerous. Providers benefit from the freedom of choice fertility patients supposedly enjoy and also, critics allege, “from transferring practical, psychological, and moral responsibility for decision making to patients.”9
These critiques of patients and professionals aren’t necessarily inaccurate or inappropriate. Reproductive decisions do fundamentally alter individuals’ identities, whether they concern running a business or deciding to genetically test embryos. Reproductive decision making does engage emotions. Patients often are vulnerable. Doctors do have to balance clinic practices, profit margins, standards of care, and patient needs. But these statements are also true throughout medicine and, indeed, for many other important life decisions. What is troublesome is when media, policymakers, and scholars misrepresent decision making’s emotional consequences to suggest desperation and greed are practically universal, experienced in the same ways, with virtually the same consequences: undermining rationality, ethical values, and professional standards of care. This skepticism prompts critics to propose placing reproductive decisions in others’ hands. Politicians and experts have suggested restricting IVF for certain populations,10 limiting how many embryos can be transferred per cycle, mandating greater psychological screening for patients, or supervising reproductive medicine providers. Some regulatory oversight might be appropriate if informed by professional standards, but claims that patients undergoing fertility treatment lack normal decision-making capacity violate patient autonomy and demean their integrity. Instead, fertility care should start with the same presumptions of patients’ and providers’ decision-making capacity as other health fields, with reforms tailored to specific abuses or evolving medical practices.11
Characterizations of patient and provider capacity matter because medical care takes place within a legal, rational bureaucracy. Under the rubric of informed consent, this bureaucracy provides guidelines for what doctors can do to patients and when. Usually, consent means that patients sign forms that doctors give them, sometimes after discussing them. But there are serious doubts as to whether this transaction really does inform patients and ensure their competent consent. The first part of this book questions whether consent can be informed within reproductive medicine, whether patients are capable of making good treatment decisions despite strong emotions.
A BUMPY RIDE: INFERTILITY AS DISRUPTION
When you begin planning your family, you get excited because it’s something that you’ve always wanted and the time has come to make your dreams a reality. As with anything, you begin with anticipation, you hope the outcome is successful. For example, you’ve waited to travel to Europe and the time has finally come… . You go on the trip and everything you have waited for, that you anticipated, that you dreamed, was crushed as your flight was canceled, your hotel burned down or someone hacked your bank account and you don’t have the money to go. However, you don’t give up because … it’s been a lifelong dream… . Meanwhile, all your friends have gone and traveled there and experienced great things and you’re still stuck at home.
—Sheri Lopez
Reproductive decision making takes place in a unique emotional, psychological and physiological context. One way to understand what this might be like is to imaginatively step into the shoes of an individual confronted with an infertility diagnosis, making her a “we” instead of a “she.”
For most, conceiving a child is fairly easy—perhaps too easy, if pregnancies are unwanted. If we can’t conceive, we can seek medical assistance, but at steep prices, leaving many stranded without access to fertility technology. If we’re lucky enough to access these treatments, we must submit to complicated monthly treatment routines, including anything from ovulation-stimulating medications, to timed intercourse, to IUI or IVF. This is a very stressful time; we might learn smack-dab in the middle of our IVF cycle that we have too few mature eggs or unusually low embryo fertilization rates. And at its end, we face the interminable “two-week wait” before the final pregnancy test. Even a positive pregnancy test doesn’t grant us respite from anxiety and heartbreak, since miscarriage is still possible. Infertility disrupts our lives in varying ways, depending on our personalities, relationship dynamics, coping skills, doctor-patient relationships, medical history, prior conceptive attempts, and just plain luck. We likely endure these journeys alone, or with our partners.
Infertility also forces us to negotiate difficult decisions—whether to continue treatment, what interventions to pursue, how to finance care, and sometimes how to get through the day—all while wrenching emotions may destabilize our core feelings of identity and competence. In infertility, as in many other life circumstances, we must make complex choices among numerous options with conflicting advantages and disadvantages and uncertain outcomes.12 These decisions often require us to weigh religious and personal values, ethics, financial assets, short- and long-term goals, and partner preferences. Deciding what to do may change our sense of who we are and what we believe.
Infertility’s impact starts with diagnosis. Cultural expectations about what’s “normal” in certain life stages can structure our lives; trying and failing to meet these expectations is disruptive, especially when unanticipated.13 We may think we have a “normal” potential to conceive until infertility catches us unawares. Afterward, we might feel broken. Even those of us who anticipate difficulty conceiving find an infertility diagnosis unsettling, a crossroads where we must halt to determine what comes next.
Infertility first compels us to choose whether to accept a childless future—a decision that entails others, like how much we really want children, what we might give up to have them, what risks we’re willing to take, and whether our children must be genetically related. For many of us, this is the most momentous decision we’ve encountered as adults. Accepting childlessness might be a predictable and “safe” option, but may over time be the most painful. Undergoing treatment means seeking a future with children at unknown cost, a willingness to make the necessary sacrifices, and facing the real risk of not having children anyway. Which path is most attractive depends on our personalities, needs and desires, support skills and systems, and physical, emotional, and material resources.
Adjusting to and negotiating infertility, then, requires that we learn how to tell this event within our life stories.14 Telling stories about disruptive events is a healthy coping mechanism. We revise our life stories to include events we need to make sense of—to understand, redefine, resist, and ultimately own their effects on our identities, relationships, careers, and life plans. This, in turn, helps us to work through these events, solve the problems they pose, endure them, and even defy them. Emotions are undeniably important to these storytelling processes.
How disruptive infertility feels depends on how easily we’re able to include it within our life stories. Before we suspect that something might be wrong, we often use our family medical histories to create and structure our family-building expectations—sometimes to our detriment. “I never really even thought of the possibility that it wouldn’t be easy for me,” Kathryn Patton reflected. “My grandmother had seven kids… . and my mom had us very quickly and young.” Difficulty conceiving is particularly shocking for those experiencing “secondary infertility”—when a person becomes infertile after successfully having children without medical intervention. “That was something that never entered my mind,” said May Weiss. “I was that person which we all hate now.” Those who anticipate difficulty conceiving find it easier to adjust. Given her medical and family history, Shannon Ward wasn’t surprised when she couldn’t conceive: “I’d had irregular periods for my whole life; it had occurred to me that we’d have trouble getting pregnant, and we knew that [my husband]’s brother had had male factor infertility as well… . When we were