Law professor’s book explores infertility treatment experience
Apr 16, 2018
Indiana University law professor Jody Madeira gave birth to triplets in 2007 after struggling to get pregnant, then undergoing in vitro fertilization. The experience was difficult and emotional, she said. But it was also empowering, as she and her partner studied their options, made complex decisions and engaged in a complicated process.
But as she planned to incorporate the experience in her teaching, Madeira saw that many legal scholars viewed infertility treatment as different from normal medicine. The idea, she said, seemed to be that women dealing with infertility would be overwhelmed by emotion and unable to make sound decisions about treatment.
Madeira, a professor and the Louis F. Niezer Faculty Fellow in the IU Maurer School of Law, conducted in-depth interviews with 130 patients who had undergone infertility treatment and 83 medical professionals in the field. The result is the most comprehensive study to date of the complex emotional, personal and ethical world that patients enter when they seek infertility treatment.
The vast majority of patients, she said, described an experience similar to her own. They were “desperate” in that they were desperately eager for treatment to work. But desperation didn’t overwhelm or paralyze them or cause them to make irrational decisions.
“It’s not pleasant,” Madeira said, “but what the experience of desperation did was, it made us research, it made us choose the best doctors, it made us educate ourselves about what to expect.”
Madeira said it’s surprising that assisted reproduction has received so little detailed attention in legal scholarship, given that it’s a common experience. One in eight couples in the U.S. has difficulty becoming pregnant or sustaining a pregnancy, according to Revolve: the National Infertility Association. Nearly half of women with infertility have sought medical treatment.
Resolve sponsors National Infertility Awareness Week, taking place April 22 to 28.
Also, having children is highly esteemed in American society. Yet people, especially women, who go to extraordinary lengths to conceive can be the object of suspicion if not scorn in popular culture.
“You turn on the television and you see these horrible stories of women who will do anything to have children,” Madeira said. “A lot of the people I interviewed knew about infertility stereotypes, if only through the media, and they were angry about them.”
The interviews Madeira conducted with patients were deeply detailed, lasting from two to five hours. Interviews with medical providers lasted over an hour. She also surveyed several hundred patients to confirm the findings. The result is not only reliable data about infertility but countless stories about individuals’ and couples’ experiences, and the stories are at the heart of the book.
A key focus of “Baby Steps” is the informed consent forms that patients must read and sign. Contrary to what many scholars believe, she found that patients do read the forms and understand them. But they view the forms as cold and formal, not a key feature of treatment.
What is an important feature, Madeira found, is the doctor-patient relationship. If patients form positive and trusting relationships with their health care providers, she said, reading and signing the forms becomes a secondary task. And the quality of the relationship has a strong effect on patients’ emotions, regardless of the success of treatment.
Madeira said that imposing strict informed-consent requirements is another way that law and policy define infertility treatment as extraordinary and suggest women lack the capacity to make responsible decisions about medical care.
“If we assume people undergoing things like in vitro fertilization cannot consent, what about all the other medical procedures?” she said. “Because medicine is never without emotion.”