Taking Baby Steps. Jody Lyneé Madeira
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.1 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.
CAPACITY INCAPACITATED?
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).2 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.”3
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.4 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.”5 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.”6
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