In Taking Baby Steps, Jody Lyneé Madeira takes readers inside the infertility experience, from dealing with infertility-related emotions to forming treatment relationships with medical professionals and confronting difficult medical decisions. Based on hundreds of interviews, this book investigates how women, men, and medical professionals negotiate infertility’s rocky terrain to create life and build families—a journey across personal, medical, legal, and ethical minefields that can test mental and physical health, friendships and marriages, spirituality, and financial security.
|Publisher:||University of California Press|
|Edition description:||First Edition|
|Product dimensions:||5.80(w) x 8.90(h) x 0.80(d)|
About the Author
Jody Lyneé Madeira is Professor of Law at the Maurer School of Law, Indiana University–Bloomington, and the author of Killing McVeigh: The Death Penalty and the Myth of Closure.
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Consent and Sensibility
Emotions, Decision Making, and Informed Consent in Reproductive Medicine
Let's not forget that the little emotions are the great captains of our lives and we obey them without realizing it.
— Vincent Van Gogh, 1889
Emotions affect everyone undergoing infertility; women experience infertility as a chronic medical condition, and have psychological symptoms equivalent to those of patients with cancer, cardiac issues, and hypertension. Infertility had pronounced emotional consequences for 91% of patients interviewed and 82% of those surveyed. But emotional effects are starkly different from person to person and often unpredictable.
Sonya Saunders has lived this unpredictability. Before Sonya married her husband, James, they knew he had varicocele, a condition in which enlarged scrotal veins cause low sperm production and decreased sperm quality. But after trying to conceive for six months, they learned that James actually had a sperm count of zero — something his urologist hadn't seen in thirty years of practice. After James underwent corrective surgery, his urologist reassured them they still had plenty of time to conceive and should wait a year before trying. But six months later, James's sperm count still hadn't improved. Distraught, Sonya visited an RE for her own workup, only to have her doctor tell her, "You have a genetic condition where you'll never be able to have kids." She was devastated for the second time in as many years: "I hyperventilated, couldn't stop crying during that meeting, I felt like I just got hit by a freight train." She felt helpless in the face of infertility: "How much money are we going to spend on this? How far are we going to go? What are we going to do?"
Advised to try "natural IVF" — where patients don't take medication to stimulate their ovaries and increase egg production — Sonya and James completed four cycles over the following year. One cycle was cancelled, and three resulted in embryo transfer, but none resulted in pregnancy. These experiences took a terrible emotional toll. "By the third negative, I was having a major breakdown. ... I wasn't getting the help I needed, and I was in big trouble," Sonya said. "It just starts to build up and you don't realize how much it's unraveling. ... At that time, I would talk about suicide all the time." Eventually, she found a RESOLVE support group and counselor. "Being with people that have gone through the same thing helped the most," Sonya reflected. "I don't think the isolation can ever be overrated." By this time, infertility had wreaked havoc on her personal relationships. "The majority of my friends are on [their] second or third kid; you feel so far left behind," she explained. "Nobody can grasp [infertility, so] you lose the ability to talk to your best friends about something that can be so incredibly painful. ... Your external support system is just crushed ... so your marriage has an incredible strain."
The emotional dynamics in Inez Griffith's conceptive journey were markedly different. When she was 33, Inez consulted her gynecologist for severe bleeding, only to be told she should already have had children and might need a hysterectomy. "I came home and cried about a bazillion tears and thought it was the end of the world," she recalled. Soon after Inez began dating her husband, Chris, the two discussed starting a family. Anticipating difficulty, they visited an RE to formulate a game plan: first attempt IVF with Inez's eggs, then move on to donor eggs, and finally try adoption. This strategy helped Inez to cope: "we wouldn't just put ourselves into desperation trying again and again and again." Inez determined she'd not allow infertility to dominate her: "I went to a couple of support groups. ... there was this one woman who you can tell she's been through a lot of failed cycles, and she had this angry, miserable look on her face. ... I can certainly understand feeling that way, but I'm like, 'I don't want this to be my end result.' That's when my husband and I really sat down and said, 'We're not just gonna keep beating something and start throwing something in and just keep being disappointed.'" It took only one IVF cycle for Inez to became pregnant with her first child; she conceived her second with a frozen embryo transfer. She credited her emotional equanimity to conceiving easily: "we did luck out, and I don't know, if we hadn't, [we might've said], 'Then let's just keep trying; the next time it'll work.'"
Both Sonya and Inez had to confront an infertility diagnosis, and each made the same choice — to seek fertility treatment. But this choice yielded two wildly disparate outcomes and two strikingly different narratives. Whereas Inez was all too aware she'd need medical intervention to conceive, Sonya experienced an unforeseen series of painful setbacks as each proffered remedy proved unsuccessful. And while Inez ultimately conceived twice, Sonya was still stranded in IVF hell at the time of her interview and felt victimized by bad advice and misfortune. How can infertility produce two such radically different emotional accounts?
As these two narratives illustrate, infertility is an umbrella term covering a multitude of causes, contexts, emotions, and outcomes. People speak of an infertility "journey," a flexible metaphor implying that these sojourns can have different durations, don't always progress in a steady or orderly fashion, and can be easy or difficult (or both, at different times). Infertility journeys aren't only about getting from Point A to Point P(regnant), but also about the experience of traveling itself; like all journeys, this one takes people to new destinations, requires planning, and changes lives.
Emotions often spark infertility journeys, which in turn change personal identities; begin and end relationships with friends, family, and medical professionals; and trigger medical and ethical decisions. Emotions supposedly disrupt individuals' lives and pose problems for decision-making capacity. But for better or worse, they also play key decision-making roles. Thus, emotions are like compass points that help individuals to orient themselves and find direction within the infertility experience — but unlike these points, they can change in unpredictable ways throughout this disorienting journey.
As history goes, it's been a mere heartbeat since a radical transformation took place in medicine, from the "commonsense" assumption that doctors are logical treatment decision makers to the conviction that such choices should be left to competent patients. Patient autonomy is now the watchword for doctor-patient interactions — unless questions about patient capacity arise.
But in reproductive technology, patient autonomy is far from commonly accepted. Many voices have challenged the presumption that women generally make informed reproductive choices, from religious and political leaders to scholars and even feminists. The criticism is often phrased the same, regardless of the reproductive choice at issue, and goes something like this: "She wants desperately, blindly to ______" (get an abortion, become a mother, donate her eggs, become a surrogate, or get her tubes tied). One scholar has claimed that patients undergoing IVF "have difficulty absorbing medical information and rationally evaluating the risks and benefits of various treatment options," and that "the power of wishful thinking obscures rational deliberation. Infertile women will often opt for any treatment option presented, regardless of the physical, psychological, or financial price."
Other voices challenge whether the reproductive endocrinologists who help patients make treatment decisions can maintain professional ethics and prioritize patient care in the face of profit motives. One author, for example, asserted that "the underlying principle of fertility treatment is the right of the paying consumer to reproductive freedom," and described ART as "relentlessly profit-making." A high-risk pregnancy physician remarked that reproductive medicine "has become a consumption specialty," and claimed that REs, like their patients, will "do anything": "[t]here [are] so many of them out there, they compete among each other to see who gets the patients, so they'll do anything to maximize the chances of achieving a pregnancy."
In most areas of practice, insurance providers or hospital associations provide a buffer between professional compensation and patient payments. An emergency room doctor doesn't need to worry whether she'll be paid, even if she provides care to indigent patients. The typical RE, however, does need to be concerned. The pervasive lack of insurance coverage for treatments like IVF makes most fertility processes elective, to patients' consternation, more like cosmetic surgery than cancer care. Within reproductive medicine, independent, 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. 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. 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."
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, 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.
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. 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. 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.
Excerpted from "Taking Baby Steps"
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Table of 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