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