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CHAPTER 2

“The Heart Wants What

the Heart Wants”

Patients’ and Providers’ Reflections on Desperation

I would define desperation the same way the Supreme Court did when ruling on obscenity back in the ’60s: I know it when I see it. Or, rather, when I feel it. It’s when I have no other options, or when none of the options available to me are realistic or helpful. It’s when things seem impossibly tough, but I know that there’s no cavalry coming to save the day, so I pin all my hopes on something that might have low odds of success. It’s when there’s no Plan B—or when Plan B has been exhausted in favor of Plans C, D, E, and F and I’m wondering how far down the alphabet I can go before I give up… . I’ve been desperate for a crystal ball to find out whether this story would have a happy ending, for my baby’s health and life and for my own mental and physical well-being… . I’ve been desperate for time to pass so I can put miles between where I’m now and where I started this process, and I’ve been desperate for time to slow down since I fear that the worst is yet to come.

—Jade Jones

In 1978, the birth of a baby girl named Louise Brown produced a seismic shift in reproductive medicine. Louise was no ordinary baby, but the first child to be born through IVF. No longer was infertility an automatic life sentence to involuntary childlessness, to be negotiated only through adoption or donor sperm and IUI. For those with resources, like insurance, savings, credit cards, and generous relatives, IVF offered new opportunities to get pregnant. Intervening decades have brought new technological breakthroughs, but fairly stable (and high) prices. But with these reproductive medical advances come the emotional, psychological, and financial realities of unequal access. Others who can afford such treatment may find it’s not successful. For many, the dream of a biologically related child still shimmers on the horizon, seemingly just out of reach.

For decades, many have used the term “desperate” to describe individuals caught up in conceiving.¹ If emotions like anger, frustration, and sadness are thought to warp decision making, then desperation is allegedly the worst of the lot, ostensibly robbing individuals of rationality and even competency. The “desperate” label has become highly politicized, used to create (or have the effect of creating) a power relationship, in which individuals experiencing infertility are subordinate to others, most often medical professionals. “Desperation” signals unease with emotion’s role in decision making—and with reproductive decision makers. Unsurprisingly, it is a label almost exclusively applied to females, like the “hysteria” diagnosis used to marginalize women in the nineteenth and early twentieth centuries.²

Legislators, policymakers, and the entertainment media frequently use a discourse of desperation and emotional extremism to justify proposals for ART regulation. As Dr. Stefanie Burgstaller observed, “it seems like movie stars and people in People magazine are frequently conceiving by infertility treatments, and they’re kind of portrayed as being devastated if it’s not happening and ecstatic if it does.” It gets to the point where it’s hard for clinics to get magazines for their waiting rooms, since “patients … complain that … almost every cover is about whether or not someone’s pregnant” (Dr. Burgstaller). Other critics use the term “desperation” as shorthand for concern about infertility’s emotional repercussions, the commodification of reproductive processes and products, and the potential for coercion and exploitation. Meanwhile, this characterization has fueled negative stereotypes of women experiencing infertility, who appear selfish, obsessed, and rude on the one hand or helpless or pathologically depressed on the other. Perhaps the most desperate of desperate women are those, like Lisa Montgomery or Korena Roberts,³ who murder other women who are pregnant and nearly full-term, cutting the babies from their dead mothers’ wombs.

These arguments also come into play in related contexts like abortion.⁴ Here, advocates champion women’s right to choose to terminate a pregnancy—an option that, like trying to create a pregnancy through IVF, is a reproductive decision. Sometimes, women undergoing IVF are labeled desperate, and those choosing abortion are not. But why should we trust women’s decisions in one context, but not in another? Shouldn’t we trust all such choices, without good reason to believe such trust is misplaced? Why are emotion-related rationales necessary for regulating reproductive technologies in the first place, when such calls could logically come from IVF’s scientific, medical, and ethical risks, like multiple births?

DESPERATE MEASURES, MEASURING DESPERATION

“Desperation” might not even be an identity that many women actually own in conventional ways. When interviewed, several were surprised when asked whether they felt desperate, and instantly denied that it (or related stereotypes) applied to them. For instance, Jackie Carson would’ve gone to great lengths to conceive, but she found “desperation” offensive: “Anything legal I would’ve done, probably, … if you had given me herbs, I would’ve taken them; I would’ve stood on my head for 20 minutes. But … I don’t like when I see in the tabloids like, ‘Claire Kardashian is desperate for a baby!’ Why does she have to be ‘desperate’? Why can’t she just be ‘ambitious’?”

Jackie doesn’t just reject the desperate label; she transforms it, reframing such activities as agency, not weakness. This suggests that intense emotions do not necessarily translate into deficient decision making. And far from viewing themselves as passive or paralyzed, individuals overwhelmingly (83% interview, 91% survey) described themselves as assertive while obtaining fertility treatment.

A deeper exploration of “desperation” illustrates why and how emotions are central to informed reproductive decision making.⁵ Instead of paternalistically labeling patients, we must comprehensively understand their experience of desperation and identify what factors trigger its rarest and most harmful forms to improve treatment experiences for all patients. Many individuals consider themselves desperate and even describe this emotion in stereotypical ways—but very few report that it interferes with decision making. As they describe it, desperation is usually an internal drive, invisible to others. This explains why providers believe that only a handful of patients—5 or 10%—are desperate; they simply don’t see desperate patient behavior very often. Moreover, as in other medical fields, if desperation becomes problematic, it offers opportunities for doctors and nurses to help guide patients, providing information and counsel—one way in which patients and reproductive medicine professionals collaborate in conception. Thus, the desperation label paints with too broad a brush. Even if this label implies that commenters have an appropriate, even thoughtful concern for women’s welfare, it ultimately undermines the very autonomy it supposedly protects, since concerns over capacity actually apply to very few.

Understanding the term as political, we can see that each individual makes infertility-related decisions within her own complex web of personal and societal relationships, values, and norms as well as conflicting perspectives on sex, gender, love, marriage, reproduction, childbearing, family structures, lifestyles, and health needs. For better or worse, part of the infertility experience is acknowledging the desperation label and negotiating its fallout. To recognize desperation’s political contours, set it aside, and explore the emotional truths it obscures, we must explore how patients define and experience desperation and how medical professionals think it affects treatment decision making.

Patients’ and providers’ comments illustrate how desperation is simul­­taneously helpful and obstructive. Intense emotions can undermine decision making, but although desperation is a conglomerate of strong feelings, it doesn’t usually interfere with these activities. Instead, patients say, it motivates them to research infertility or seek treatment (perhaps effectively becoming fertility consumers⁶), surfaces temporarily in extremely distressing situations like receiving negative pregnancy tests results, or doesn’t come up at all. Fertility professionals report that very few patients are desperate, and they often characterize this term as stigmatizing. Although (and perhaps because) it is often inaccurate and demeaning, both patients and fertility professionals recognize that desperation nonetheless influences their infertility experiences, intensifying infertility’s emotional burden and affecting the development of provider-patient relationships.

A LABEL OF LAST RESORT: DESPERATION AS A POLITICAL CATEGORY

Conventional definitions of desperation highlight an intense hopelessness and despair that might encourage recklessness,⁷ a “state of anguish accompanied by an urgent need for relief,”⁸ and a feeling of entrapment accompanied by powerlessness.⁹ All of these emphasize disruption¹⁰ that alternately motivates action and induces paralysis.¹¹ The other health needs that create desperate patients and scenarios tend to be life-and-death experiences, like running out of standard treatments for an illness and turning to experimental ones, being on a ventilator, being extremely ill and entirely dependent on others, and awaiting “the last hope of rescue.”¹²

In reproductive decision making arguments, desperation is attributed to both internal and external sources. “Internal” desperation stems from an individual’s conflicted emotional state, and “external” desperation from factors in the outside world. Who is said to identify as desperate and why differ with historical and cultural factors, in line with this label’s politicization. For instance, this term has long been used by both abortion advocates and opponents. Before Roe v. Wade, abortion advocates characterized women with unwanted pregnancies as internally desperate, emphasizing “women’s vulnerability” due to external factors like abortion’s illegality and “the dangers of back-alley abortions, unsanitary conditions, and unscrupulous and unlicensed providers.”¹³ Now, they use desperation to describe women’s reactions to different practices that restrict access, like state regulations. Here, desperation addresses not the quality of a woman’s options but her ability to effectuate her choice. Conversely, groups such as Feminists for Life, Life Resources Network, and others initiated a “Women Deserve Better” campaign, arguing that women would be better served if external abortion alternatives like adoption or social supports like maternity coverage, flex time, and quality child care were easier to access.¹⁴ A more widespread opposition trend is to assert the “women-protective”¹⁵ claim that women are internally desperate and thus uninformed, undecided, and untrustworthy, eviscerating their decision-making autonomy.¹⁶

Abortion opponents’ arguments closely resemble the (often dubious) claim that women negotiating infertility are likely to make bad treatment decisions. But real external factors limiting treatment access, like weak institutional support for fertility services, do affect patients’ emotional states, along with pressure from partners, peers, and family members, employer inflexibility, financial obstacles, and other difficulties. Each barrier to autonomous and independent decision making requires a different solution. For external desperation, effectuating autonomy means removing obstacles to aid women in implementing their decisions; for internal desperation, it means improving their capacity for autonomous choice. Regulations mandating infertility insurance coverage effectively remove financial obstacles, allowing some men and women to access fertility treatment; other processes like informed consent can educate patients and reassure providers, improving decision-making ability.

Notwithstanding its negative connotation, the term “desperation” resonates with many experiencing infertility—but usually not in conventional ways. It’s immediately apparent in Figure 5 that high percentages of individuals considered themselves desperate, viewed infertility as a “crisis,” would “do anything” to conceive, and believed that infertility “incapacitated” them at some point. But these statistics represent the tip of the iceberg; the truly interesting explanations of what desperation actually means have lain invisible, under the waterline.

FIGURE 5. Patients’ Perceptions of Their “Desperation” (by surveys [S] and interviews [I]). Source: Jody Lyneé Madeira

Individuals experiencing infertility must grapple with desperation as a political or cultural tool, pushing aside existing cultural stereotypes of bitter, demanding, spineless, hysterical, or bitchy women to make room for their own family-building stories. Consequentially, desperation has evolved along two contradictory paths. In one sense, the term is popularly identified with extreme and impulsive behaviors. But in the context of women’s actual experiences, desperation is less politically loaded and usually describes healthy, if harried, attempts to negotiate infertility’s diverse consequences, including fitting rigorous treatment protocols into busy schedules, pervasive life changes, shifting relationships, and loss of control. Importantly, individuals also identify this kind of desperation in many other significant and challenging life events, like job loss or career changes, seeking a loving life-partner, and non-infertility-related health conditions.

Many patients never feel desperate; they identify options, won’t “do anything” to conceive, aren’t obsessed with infertility, and adhere to treatment limits. Patients find other family-building routes should treatments fail. Kendra Figueroa intended to use donor eggs, but realized success wasn’t guaranteed: “[I thought], ‘Okay, here I’m doing what the doctor has said gives us the highest percent chance to conceive, and if this doesn’t work, then that’s just God’s way of saying you’re done, … you’re meant to do other things.’ And other things in life can be fabulous.” Patients who aren’t desperate have lives, limits, and options. “I had other stuff going on; it was just one component of my life, not my life,” explained Stella Madison. Similarly, Jenna Moreno reflected, “If we never have kids there’s always adoption, but we’ll have each other. We both have good jobs; we’ll have a good life.” Allison Perkins’s religious faith deterred obsessive thoughts: “I have a huge desire to have a child with my husband, and would have to go through a grieving period if we can’t conceive, but I know that this isn’t the end of the world… . I know life isn’t going to stop if we can’t have a kid.” Marie Byrd knew IVF with her own gametes was her “last resort”: “one, for the Catholicism, and also because my cousin did it. He and his wife used donor everything, and ended up with triplets. And I didn’t want to go there.”

And those who do experience desperation can create strategies to mitigate it: treatment limits like not using donor gametes, or caps on numbers of cycles or dollars spent. As Jackie Carson remarked, “I don’t think I was desperate to conceive. I was very driven to conceive, I had a lot of ambition to get pregnant… . I wasn’t going to steal a baby or anything.” Several reproductive professionals affirmed that most couples choose the most appropriate treatment rather than the most aggressive: “I think patients are very accepting in our practice of the results of their testing and that guidance from their physician… . In almost every case, we’re starting with the least invasive treatment, the least costly treatment that’s appropriate for the patient” (Head Nurse Melina Draper).

Like other emotions, desperation can make patients vulnerable and thus potentially easy marks for unscrupulous providers.¹⁷ But patients, too, have responsibilities, like making reasonable efforts “to seek technically competent help [from] … a physician and to cooperate with him.”¹⁸ So-called “desperate” behaviors like researching infertility, investigating infertility clinics, and strictly complying with treatment protocols are how most patients attempt to fulfill their end of this bargain.

As a political label, desperation includes certain emotions and mental states that allegedly heighten coercion and warp decision making. If an individual who intensely desires a child chooses IVF, the presumption is that her choice is hastily made or ill-considered. But what choice an individual makes—like whether or not to undergo IVF—often matters less than how it is made. Choices based on critical reflection more likely reflect patients’ actual interests and desires, while “desperate” circumstances, like “fear, low expectations, and unjust background conditions,” can deform decision making.¹⁹ But it’s important to distinguish between choices that are coerced and those that are merely constrained. Conceiving a child through IVF is a “Plan B”—what couples decide to do if their “Plan A” doesn’t work.²⁰

Righting wrongs (and reconstructing individuals’ autonomy) requires us to reject the idea that desperation is only a response to a “bad” or “wrong” situation. Rather, devoting one’s self to making a decision and scrutinizing all options can be an inevitable and healthy response to tough choices, a sign that someone is circumspectly and competently identifying and evaluating all options to a sticky problem. Here, desperation is the by-product of empathy and awareness of how infertility, like other troubling issues, affects one’s self and others, and of how a decision is difficult and implicates many cultural stereotypes. Perhaps, then, we should be more concerned by desperation’s absence than its presence.

According to patients’ reflections, desperation rarely paralyzes them. It might take over their lives, frustrate them, prompt them to rethink life goals or treatment limits, or make them ever more determined to find a successful treatment. But even in the face of severely constrained options, individuals most often treat these points as decisions that require engagement, not moments to act carelessly. Rather than signaling imperiled decision-making capacity, then, desperation often summons agency or autonomy. A woman choosing whether to undergo IVF is likely aware of and weighing important considerations; she recognizes the factors at play and the decision’s complexity. In the most troubling situations, she makes no choice; it’s most worrisome when patients can’t decide what to do or don’t review an informed decision to undergo IVF before starting another cycle. Desperation becomes most problematic not when a woman doesn’t understand its root causes, but when she’s frozen in indecisive contemplation or action. But indecision and “decision by default” happen to almost everyone in other life circumstances. Patients’ experiences with desperation illustrate how this emotion both advances and hinders their infertility journeys.

DESPERATE MEASURES, MEASURING DESPERATION: HOW PATIENTS EXPERIENCE AND DEFINE DESPERATION

Desperation has predictable causes and contours, depending on when and how strongly individuals experience it. Such feelings often follow memorable events like diagnoses or unsuccessful cycles that entail new decisions, raise different options, and trigger tumultuous emotions.

When individuals feel desperate after being diagnosed with infertility, it often comes as a shock, feeling overwhelmed, or a willingness to consider all options—and as a driving force to seek medical assistance.²¹ “It wasn’t really that strong until we found out we couldn’t [conceive]… . That’s when it was kind of like, ‘Okay, I’ll try anything now,’” Tracey West reflected. Kelley Bates would never forget “that first conversation where IVF was on the table”: “I didn’t realize it was going to be that serious of a talk… . It was a ‘come to Jesus’ meeting; it was like, ‘Holy shit.’” Clay Padilla’s male factor infertility diagnosis made it “hard to even know or to think what the expectations were. I think we were very demoralized initially.” One particular diagnosis—unexplained infertility—only made individuals like Nicole Bell more desperate: “If someone said, ‘This is what’s wrong with you,’ I might be able to accept something. But unexplained [infertility], it threw me over the edge… . I couldn’t wrap my brain around there being no answer really. That was hard.”

Desperation acquires different dimensions as patients pursue treatment, time wears on, and pregnancy remains elusive. Here, desperation is the product of treatment.²² Francis Foster felt desperate after learning reproductive medicine is as much an art as a science: “By the way that the medical community talked, and the boards talked it up, and the doctor talked it up, it’s almost a sure thing, and then you come to find out that that’s the furthest thing from the truth… . You think modern medicine is more than it actually is… . This is the best thing that medical science has to offer… . And then we did [IVF] twice… . So how can this keep failing? It’s so god-awful expensive, how can it not work?”

Cecelia McBride and Philip Barnett each grew desperate after three unsuccessful IVF cycles, and Nicole Bell reached that point after “four or five IVFs.” After her first and fourth IVF cycles, Nicole asked herself, “how many more times can you do this to yourself? One more, one more, one more. When do I stop? I don’t know.” Women in their late thirties are especially likely to feel desperate, largely “based on my age and time passing by” (Josephine Palmer). Desperation also accompanies pregnancy loss. Dora Adkins felt desperate during a frozen embryo transfer after losing a twin in a previous pregnancy: “I may have felt a little more desperate just because I was very much wanting to get back the sibling that we lost.”

Whether patients already have children also affects desperation; those patients with secondary infertility might still feel desperate, but their experiences are qualitatively different. “We have kids, and so … the necessity for us to actually get pregnant wasn’t desperation I guess because we always had a fallback,” Nick Hall recalled, “but there was some desperation because of our age, and we already had the kids and we didn’t want to space them too far apart. We did kind of rush through the infertility.” Similarly, Antonia Hughes reflected, “I have an older son, so in some ways it wasn’t as big [a] deal to me”; after she remarried, “she “felt more pressure to give him his own child than … a desire to want one myself.”

When individuals acknowledge feeling “desperate” after several unsuccessful treatment cycles, they’re usually using this term as a synonym for an intense emotional barrage. This type of desperation has several different components—the feeling that infertility consumes their lives, a determination to conceive that occasionally becomes preoccupation, feeling that there aren’t other options, reconsidering limits on fertility treatment, and a willingness to “do anything” to conceive. Though individuals’ descriptions can sound like stereotypical desperation, only a few felt that desperation had worrisome consequences. For instance, Danielle Greene felt she was “really not able to move past being obsessed with it [infertility]”; her desperation provoked depression, not decision-making effects: “not being able to move on to other emotions and not being able to have joy in other parts of your life.” When patients can no longer reflexively weigh risks and benefits, doctors must occasionally step in and play guide or gatekeeper.

Infertility can seem all-consuming when patients have to schedule all else around treatment protocols: “Everything revolves around it. And this went on for years, two or three years… . Your whole life is really at a standstill until you become pregnant” (Nicole Bell). “All-consuming” also means that infertility routines absorb all of patients’ internal resources—their attention, mental and emotional stamina, patience, and creativity. Adam Woods was intensely focused on conceiving:

I would’ve cut off my own leg. If it didn’t endanger the child’s future, I would’ve done pretty much anything short of hurting someone else. You make those deals with the universe… . . So the desperation comes from just being held in absolute check by it. You can’t think about anything else, you’d do anything to make it happen… . As a biologist, I mean, part of the definition of life is something that replicates itself. If a person can’t do that, they don’t actually satisfy the definition of a living organism. So at times I’ve felt like I’m just a walking zombie, that I don’t matter anymore.

It was certainly unhealthy when individuals’ lives revolved around their infertility.

Or desperation can be a boundless determination “to have a child no matter the cost” (Nick Hall); therefore, individuals “w[ere] willing to try anything and spend any amount necessary to do so” (Deanna Douglas). “A lot of my girlfriends were … trying to get pregnant, but a lot of them were scared off from IVF or fertility treatment,” Gillian Matthews reflected. “They don’t want it that bad. We wanted it bad. We were the type of people that would mortgage our house.” At times, individuals even seem to take pride in the strength of their determination.

Finally, several who feel desperate think they have no other options, “like you’ve nothing left to lose” (Cameron Ellis) or you’re “at the end of your wits, you’ve nobody and nothing to turn to, … it’s the end of the line” (Clay Padilla). This outlook can blind individuals to important information about treatment risks and consequences: “I think I had blinders on a lot of the times of just getting to point A to point B to baby-in-my-arms… . I’ll sign whatever I had to; I do whatever I had to” (Amber Butler). As these comments illustrate, in almost all “desperate” situations, individuals feel that infertility has backed them into a corner.

AT THE END OF YOUR TETHER: DESPERATION AND TREATMENT LIMITS

Desperation is frequently associated with reconsidering limits on fertility treatments. Fearing they might become too deeply involved, many patients stick firmly to their treatment limits, measured in use of donor gametes, numbers of cycles, embryos transferred, or dollars spent. Lena Coleman never wanted to use only one set of donor gametes: “if the babies couldn’t be all of ours, then it was going to be neither of ours biologically.” Christine Zimmerman, who already had one child, chose not to purchase a plan covering multiple IVF cycles because she “didn’t want to do it that many times.” And Nathaniel Sims and his wife stopped after their first IVF cycle: “the answer was pretty clear: four unfertilized eggs. And that was the line; that was when we stopped digging a ditch.”

Patients’ finances often impose treatment limits by default. Stella Madison told her physician up front they’d attempt only one IVF cycle because of dwindling finances and drained emotional resources: “I told the doctor, … ‘Look, outside of having only limited funds left, … I don’t have it in me too many more times to miscarry… . I need to put all my money in one betting hand here, and to me that’s one last round of IVF.’” Christopher Franklin agreed: “I was kinda like ‘Well, I’ll do $30K, and that’s it. Or I’ll do $15K a year, but once that’s out, we’ll wait till next year.’”

Most patients who keep to their limits are wary of becoming desperate. On the cusp of starting her first IVF cycle, Allison Perkins was determined not to let treatment control her life and financial priorities: “I don’t want us to get to a place that every year we save up enough money to do a fresh IVF cycle the next year, and that it’s just this never-ending cycle.” Racquel Kennedy took a six-month hiatus from IVF to become more grounded: “it’s kind of taken over our lives at some point. We were determined not to let it, but it becomes like the most important thing that’s going on. So we actually took a six-month break to save for the in vitro and for me to get my cool back, just to make sure we were focusing on ourselves and not just on this project.” Similarly, Inez Griffith said, “The one thing I didn’t want this process to do was to turn me into someone that had no enjoyment in life and that narrowed my worldview to think the only way to happiness was a child. I just wanted to hug those women and tell them that they were more than their infertility.”

But desperation can make it harder to stick to treatment limits, and patients frequently link it to reconsidering and then exceeding their personal restrictions: “I would define desperation as doing the absolute last thing that you thought you’d do, [IVF]” (Lindsey Burton). Early on, it can be hard for patients to place realistic limits on switching or stopping fertility treatment, especially when new treatments reveal new information and novel options. Christy Hoffman’s willingness to try IVF evolved gradually: “At the beginning, I said I would never inject myself with needles, and then I did. I said I wouldn’t undergo more than three treatment cycles with needles, and then I did. I said I would never undergo IVF, and then I felt like I had to. I finally had to realize that it was possible that I would never have my own biological child and only then did the anxiety and desperation go away.”

For this reason, patients acknowledge their treatment limits are often elastic and are often adjusted for reasons other than desperation. Simone Henry reflected, “Where I draw the line in the sand is consistently changing, and I think part of it is the feeling of being out of control, and part of it is now I have information that I didn’t have… . I once heard someone describe it [as] like a drug, because you think ‘Okay, we’ll do this and then we’ll stop, let’s do one more.’ And so I think the more I do it, the more I want it to work.” But even patients who set limits can feel desperate as they approach these upper bounds. Joyce Harrington described how desperation suffused her final IVF cycle:

I would describe “desperation” as a feeling of anxiety trying to tamp down hopelessness. It means that everything is on the line, and it conjures sweaty palms and a pit in one’s stomach. We felt increasing desperation as our treatments continued with negative results. It reached an apex with our latest round of IVF, which we decided would be our last due to financial and emotional concerns. The entire process was loaded with the knowledge that this was our last shot and that we were on the cliff. We felt tremendous relief when this round produced a positive result, and we’re now seven weeks along. The desperation is still there, however, as we know that nothing is guaranteed. I guess hopeful desperation has replaced the hopeless variety.

Some have great difficulty pausing to weigh risks alongside benefits. Patricia Burns urged, “at one point my husband even said he felt like I would keep trying to conceive even if I didn’t have him… . he could’ve left me, and I would’ve gotten donor sperm.” It was as if, when the going gets tough, the tough get tougher: “The harder it was, the more I wanted to persevere through it; to keep trying what we could try. But I don’t know if the difficulty of it is what drove me” (Brittany Watson).

The question of when to take a break or cease treatments frequently causes tension between partners. Bridget James was so eager to conceive she began another IVF cycle immediately after miscarrying: “I felt like the way for me to help cope with the loss was to get right back into treatment, and he [my husband] wanted to take some time off, and maybe even explore other avenues.” Nicole Bell acknowledged, “I was so afraid he [my husband] was going to say ‘stop’ because I never wanted to stop. I was obsessed.” She continued, “[A]s long as I had a plan of action, as long as I was doing something, I felt good. I felt proactive.” For their part, men often feel besieged when they try to discuss limits: “I’m willing to do anything my wife wants, and if my wife wants to continue, I’ve learned not to question,” Rodney Hodges noted. “[W]hen the third time came up, I was like, ‘So, are we stopping?’ Honestly, I could’ve said I was going to murder her mother.” Occasionally, these tensions can destroy marriages: “if I was willing to accept and to be childless, then … we’d still be married, and happy. But I think we just spent so much time on this and we’ve been through so much pain” (Kay Elliott).

THE DEPTHS OF DESPAIR: WHEN DESPERATION BECOMES PROBLEMATIC

As it grows more extreme, desperation often comes with costs—physical, emotional, relational, and financial. It can even progress to the point where individuals plead with doctors to take unhealthy risks. “I’ve been spending money likes it grows on trees, asking for off-label drug therapies that might help me to get pregnant, doing one FET cycle after another, not even giving my body a rest from hormone therapy,” opined Lola Lewis. “I think all of these things are acts of desperation.”

When they reconsider treatment limits, individuals’ views of appropriate risk levels change, like their willingness to chance conceiving twins or triplets: “we weren’t sure about multiples. By the time we got to the second one [cycle], we were so kind of desperate, you know, how many [do] we get, let’s just do it” (Joyce Harrington). Desperation can encourage individuals to prioritize the odds of success of IVF, not its risks and side effects: “I don’t think that we really considered or talked about too much of what we were signing [on the consent forms]… . I didn’t want to hear about the bad stuff that could happen, it was just a ‘let’s get this show on the road’ kind of thing.” And they might lobby for treatments that they feel will work faster: “We did one IUI, and I was like, ‘I’m done with that. I want to go straight to IVF.’ … So even though he always makes you take a month off, I never want to take a month off. And I push and I want to have more, even when it comes to the transferring. I always want to transfer more embryos” (Deanna Douglas).

Whether perceived benefits outweigh perceived risks is a subjective determination on which individuals differ. Patients may well be in trouble when they consider compromising their financial security, personal integrity, or religious creeds. But when a decision entails a deliberate assessment of information, possible outcomes, and emotions, it’s not “desperate” as popularly conceived. For instance, exceeding expected treatment limits needn’t always compromise values: “when it looked bleakest, we were considering adoption as the next step rather than pursue fertility treatments that would be distinctly against our beliefs/morals” (Marie Byrd).

Fertility professionals also encounter patients who articulate firm treatment limits on ethical or religious grounds. Many patients don’t want to face ethical dilemmas: “The biggest sort of roadblock that we come across with IVF is ‘I don’t want surplus embryos created.’ So we try to work with them. We’ll do limited insemination, … just to make two embryos and then freeze the rest of their eggs if they want” (First Year RE Fellow Yazmin Kuhn).

In the infertility context, then, desperation is most intense and problematic when individuals believe they are entrapped—out of options, out of money, or out of time—and they are urgently seeking ways to escape. Again, these dilemmas aren’t unique to IVF. Life situations, from problematic careers to troubled romances, can also make individuals feel desperate, unsure what to do when plans fail or possibilities grow increasingly futile.

Critically, the vast majority of patients experiencing desperation experience these strong emotions when IVF cycles fail, not at their outset, during informed-consent-as-ritual, when they are presented with risks and benefits. This suggests that they can effectively weigh these factors and that desperation doesn’t undermine their consent to IVF. This accords with patients’ own descriptions of how desperation affects their decision-making capacity. Nicole Bell defended the capacity of individuals undergoing IVF: “there was a level of desperation, but it didn’t cloud my judgment on making good health decisions for myself and my potential child and my husband. I think that anybody that does pursue this isn’t an uninformed person. I’m sure they’ve gone through … some struggle. They’re not uninformed about what they’re going to put their bodies through.” Thus, unless their desperation becomes extreme, most individuals do not see themselves within conventional infertility stereotypes of incapacity, even if they consider themselves desperate.

IN CRITICAL CONDITION: HOW PROVIDERS DEFINE DESPERATION

Patients’ and providers’ views about desperation are influenced by personal relationships, treatment outcomes, and social, cultural, and political contexts. But providers’ perspectives are also influenced by different factors. Because they work in clinics and hospitals that have structures, practices, and policies (like short appointment lengths) that directly bear upon patient care and interaction, these factors might affect their opinions of desperation.

Providers have understandably complicated reactions to this label. Many despise the term, but they can discuss which groups of patients might be desperate and describe how they behave. Several professionals find this term offensive. Dr. Heike Steinmann thought it a “harsh word,” and Head Nurse Melina Draper deemed it “fairly extreme.” “When you use the word ‘desperate,’ you’ve already loaded the conversation,” Dr. Bret Sternberg asserted. He preferred the term “motivated”: “‘desperate’ … is an emotionally loaded term because [it] describes a situation of … life or death. You could say somebody who’s just jumped off the bridge in a panic is in a desperate situation. But it also has the connotation of someone who’s misinterpreting something as desperate when in fact it isn’t life-threatening, in which case we’re making a psychological judgment about them.”

Because they make decisions with patients and put these decisions into action, reproductive medicine professionals have unique insight into whether and when patients experience desperation. The vast majority admit to having some “desperate” patients, but apply this term to very few; most spontaneously estimate 5% (8) or 10% (13), rather than 20% or 30% (6) or higher (3). Specifically, 54% stated a “few” were desperate—a higher percentage than those estimating that this label fit “some” (4%), “quite a few” (7%), “most” (14%), or “all” (6%).

But several providers believe that “desperation” is too extreme a label. Dr. Denzel Burke felt it implied “somebody [was] starving or doing anything to get food for their children or somebody has a drug habit.” It might impugn patients’ desires and emotional needs, unfairly punishing a behavior—desiring children—that society strongly encourages. Other professionals are reluctant to pathologize patients’ strong desires to conceive, because some so-called “desperate” behaviors indicate informed decision making. “They’re asking millions of questions. They want to know everything. And that’s not something a desperate person would do,” Donor Program Assistant Tori Krausse explained. “They’re very well aware of what they’re choosing, what they’re doing, and what they want.”

In addition to allegedly “desperate” behaviors that actually reflect patient engagement, other stereotypically “desperate” reactions come from (and reinforce) problematic perceptions about women’s “natural” emotionality and parental inclinations. For example, Dr. Oliver Evans asserted that women are more “hard wired” for parenthood and thus more likely to become desperate when parenthood is thwarted:

[W]e can certainly see that woman have some sort of biological wiring, for a lack of a better word, a deeper sort of sense of person that’s tied to having children. Whereas men can be more rational and say, “You know, I can envision life without children.” But for women, I think there’s a more innate sort of, just human nature in having children, and you can see this caring for children. You stick a crying baby in a room full of guys, and they’re all gonna bump into each other and [say] “what are we going to do?” … Whereas women go into [it] more naturally… . I think those types of things come into play with the treatment as well. The woman actually has fought a battle, not just with herself and her own emotions, but often times her physician [who] may or may not fully understand fertility and prescribed basal body temperature charts… . And she probably has had a battle with her husband, who doesn’t want to spend money on this because it’s not that important. So from that standpoint, that’s sort of a different meaning of desperate… . This poor woman has just had nothing but barriers to pregnancy and I don’t think the husbands comprehend how important they are in that.

Providers may think such opinions are less problematic if they appear to be biological and not sexist.

Beyond so-called “desperate” behaviors that aren’t really desperate (but reflect engagement or sexism), professionals’ perceptions of which patients became desperate overlap in many respects with patients’: individuals without children, “doctor shoppers,” patients from some ethnic backgrounds, older or repeat IVF patients, or those in their last cycle. Culture and ethnicity matter; Dr. Bret Sternberg said, “[M]y Latino patients who don’t get pregnant are essentially disenfranchised… . they’ll have no social standing in their community.” Treatment history and experiences also factor in: “My ‘last chance’ kind of patient … they’re just drowning and … they’re very intense and … overwhelmed because this is gonna be it” (Nurse Elihu Brant). The length of time patients have pursued treatment is also a significant influence: “When they hit about the three to five year mark, I would say, probably about 50% of them [are desperate]. Because most people don’t come in the first year of trying. They’re not worried about it. But after they’ve been through a few fertility treatments, I think they become more desperate” (Psychologist Geoffrey Bourke).

A “desperate” patient “often has [had] a lot of difficult things happen,” like miscarriages, said Physician’s Assistant Nora Stanton. Even older patients “in their mid to late forties” might be desperate if “they think, ‘My fertility is so good,’ and I show them all the numbers,” reflected Dr. Connor Gibson.

The handful of patients whom providers consider desperate exhibit behaviors and emotions that match conventional infertility stereotypes: anger (8%), extreme anxiety (12%) or continual crying (9%), a perceived lack of control, extreme deference (5%), distrust (9%), failure to listen (10%), obsession, denial or medically “unsound” requests (46%), and excessive clinic phone calls (7%). These extreme behaviors are easy to observe; several professionals claim they can tell whether a patient is desperate even “when you’re talking to them over the phone … by their voice, their type of questions” (Nurse Jaylen Abbott). “Desperate” patients also exhibit greater anger, anxiety, and grief: “We have one that’s very angry and has blown up at everybody in this practice. And so that’s stressful to us” (New Patient Coordinator Aston Reinhold).

Desperation provokes extreme emotional displays. Dr. Nicole Potter remarked, “They’re sometimes even inconsolable in a consult, … to the point that they can’t stop that and talk.” Professionals link this distress and instability to helplessness: “especially the higher achieving women, you’ve so little control over it” (First Year RE Fellow Dr. Yazmin Kuhn). These patients often can’t complete a treatment cycle: “[t]hey’re so emotionally distraught that they’re not able to proceed through the process” (Psychologist Haylee Randell). “Desperate” patients who prematurely cease treatment contradict the stereotypical patient, who continuously undergoes IVF to the point of personal, social, and financial ruin.

According to providers, “desperate” patients either relinquish control, largely deferring to medical advice, or seize it by the throat, bushwhacking their own paths through treatment. Overly passive patients act as if “I don’t want to make any decisions, I want to do everything you tell me to do. If you tell me to stand on my head for the next three days to get pregnant, I’ll do it” (Dr. Abbie Walther). A few exceedingly deferential—and therefore vulnerable—patients might even become targets for predatory individuals recommending risky, unhealthy, or futile treatments: “There’s some guy somewhere in the country doing pretty cheap tubal reversals, and people will fly down to him and get their $2,000 tubal reversal and then they fly up here. And then six months later they come in because they haven’t gotten pregnant. I do an HSG and their tubes are blocked or they only have a centimeter of tube, which there’s no way in God’s green earth they’re ever going to get pregnant” (Dr. Bryant Rowe).

The foil of the fully compliant patient is the distrustful skeptic. “They spend an extraordinary amount of time on the Internet trying to out-doctor the doctor. They try all kinds of complementary and alternative approaches regardless of the evidence base,” remarked Psychologist Colin Bulle. Desperate patients might also continuously call their fertility clinics; IVF Coordinator Rosamund Coel recalled one patient who found her cell phone number and called her at home at 9:00 p.m. Other patients develop “tunnel vision”: “there’s a baby this way, only this way, and it has to happen in this period of time and if it doesn’t, there’s nothing else in my life” (Dr. Nicole Potter).

“Desperate” patients also have communication difficulties; they hear what they want (or don’t want to hear difficult information), and “somehow get to the point where they stop being able to work through issues” (Dr. Nicole Potter). Perhaps a patient might be “unwilling to hear her own chances for success” (Third Party RN Prasad Singh). Providers try to overcome these communication barriers and sometimes must act as gatekeepers, refusing to accommodate harmful or medically futile patient requests.

But gatekeeping is difficult when answers aren’t clear-cut, as when patients with infinitesimal odds of conceiving request a “last chance” IVF cycle. Granting this request might allow patients to avoid regret before moving on to donor gametes: “some of them just have to try … with their own gametes before they’re able to accept it… . I feel like they’re exercising their right to … try it the one time before they move on” (Embryologist Chalise Jones). Using “rights” discourse to describe patients’ treatment desires is problematic; patients traditionally have a right to refuse treatment, not demand elective services. Other providers adamantly oppose such “last chance” cycles, citing medical futility:

I had one patient who I didn’t take through IVF… . I felt like her prognosis was so poor it wasn’t worth trying. She went out to [a well-known clinic]; they tried three cycles, she failed miserably. She went to [a second clinic] to try cycles; she came back to me and she wanted to try another cycle. And I said, point-blank, “I’m really sorry, but I won’t do it. You either have to switch gears to try new donor eggs or seriously think about other options like adoption. If you just keep going down this path trying to retrieve eggs when there are none, the risks outweigh the benefits and I won’t put you in that type of situation in my clinic.” … I think being very definitive and not being wishy-washy and not letting the patient talk you into something [is best]… . Maybe I’m a smidge more paternalistic, but I feel like I’ve the expertise and the wisdom and it’s my duty to not put my patients in harm’s way. (Dr. Rory Fontaine)

Dr. Fontaine emphasizes that doctors, not patients, have the right to refuse treatment, whether or not patients pay out-of-pocket. But even he considers these refusals somewhat “paternalistic”—too apologetic a word for gatekeeping, which is most often proper medical care.

What special responsibilities should providers have toward patients they consider desperate? Second Year RE Fellow Dr. Peter Gore exercised additional caution in shepherding these patients through treatment: “Those are the kind of patients that we need to watch out for, in the sense that we need to do a better job in guiding them to more successful treatments and dissuading them from doing futile treatments.” Fortunately, providers report that most patients can acknowledge when their chances of conceiving are too low to justify the effort and expense: “if you tell somebody that there’s a 5% chance, frequently they’ll say, ‘Look, that’s just too low.’ I mean, there’s certainly people that say even [at] 1%, ‘I want to try,’ but I think most people are pretty reasonable” (Dr. Heike Steinmann). Thus, providers often correct misunderstandings through patient education: “often we sit down and I say, ‘Well let’s just talk. Let’s be educated about what really happens in the real world, not something on some sort of TV show or whatever.’ … It’s terrible because the chances of something like [Octomom] happening in a responsible practice like this are almost zero” (Dr. Nicole Potter).

Technological advances and updated standards of practice can clarify ethically cloudy areas and constrain patients’ options. Professionals have worked hard on decreasing multiple pregnancies. Head Nurse Melina Draper reflected, “I think in earlier years, patients had more say in the number of embryos to transfer. I think over a longer period … there’s been greater consideration to that risk of multiple pregnancy, and … we’re less inclined to allow patients to make decisions that would be irresponsible.” Dr. Connor Gibson was gravely concerned about this issue:

You’ve patients who say, “I don’t care if I get triplets, four, five; I’ll take the chance.” So the bottom line discussion I have with patients is, “What you want is intact survival.” And I feel firmly that I hate putting patients in a position where they may have to make a decision that makes them uncomfortable, … where they might be forced to seriously consider selective reduction… . I think that someone at least has to say, “Well, these are the possibilities, and do you really want to do this?” … It’s the same as pregnancy termination… . I’m pretty firm about how many embryos I’ll put back with IVF because I feel at least somebody has got to call something somewhere and say there ought to be a line drawn because you want people to have a healthy baby.