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