Q&A with Julie Cantor — A Question of Rights
Julie Cantor, MD, JD is a doctor and a lawyer who represents clients, advocates, teaches and writes about reproductive rights and medical ethics.
We met Julie at a recent Every Mother Counts event in Los Angeles and talked about how she’s helping promote maternal and human rights.
EMC: Julie, how did you mesh medicine and the law together as your professional focus?
I’ve been interested in issues at the intersection of law and medicine since I spent time with UCSF’s Program in Medical Ethics. During medical school, I created a seminar for Yale undergrads called, “The Stork in the 21st Century: Reproduction, Medical Ethics, and the Law.” I also started writing and speaking about these issues at hospitals and realized I wanted to head in the direction of advocacy and public speaking. In lieu of residency, I started practicing law and became an Adjunct Professor of Law at UCLA where I taught a version of my course on reproduction and the law. I’m amazed how the issues we wrestle with in my seminar are always current. There’s always something in the news that’s relevant — an identical twin is the surrogate for her sister; a sperm donor wants parental rights. I also represent experts in specific cases, like Rinat Dray’s case in New York where doctors performed a C-section specifically without her consent. The New York Times reported that her medical record included a handwritten note signed by the attending physician that said, “I have decided to override her refusal to have a C-section.” The patient was competent and capable of refusing. The question is then, is overriding her explicit choice within a doctor’s purview?
Why is maternal healthcare so ripe for human rights violations?
It’s a vulnerable time in people’s lives, and they trust the system. But the system is flawed. In most medical fields, doctors practice evidence-based medicine. Obstetrics however, seems to be an area where other forces — like fear of litigation — can influence behavior against what the evidence suggests. Ironically, it seems that certified nurse midwives, and not physicians, practice more in line with the evidence, even though midwives have the reputation for being the less-scientific provider. Most patients think that having a baby under the auspices of a physician in a hospital setting is the safest choice, and yet, that’s not necessarily so. The typical American way of birth overmedicates, intervenes unnecessarily, and kicks off a domino effect where one unnecessary intervention leads to another and ends up in a C-section. We pay for more medical care that doesn’t necessarily improve outcomes. There are endless articles, books, films, and grassroots efforts to expose this problem. And it frustrates the physicians who see it and feel powerless to change the system.
Is that a violation of medical ethics?
It may be. Doctors have a duty to do no harm and to act in the best interests of their patients. Defensive medicine may veer away from both tenets. The potential for multimillion-dollar malpractice settlements may be in the back of a doctor’s mind. But doctors may also need more extensive training during residency on unmedicated labors by spending a few months with midwives. Watching the entire birth process may allay some of the fears that can set off a snowball effect of defensive medicine.
Are you seeing more cases lately regarding the regulation of pregnancy and childbirth?
In some areas of the country, laws that have been on the books for a while are currently being used against women to regulate behavior during pregnancy, but that was never the intent behind the law. In a recent EMC blog, you ask what the right to informed consent is if you don’t have the right to informed refusal.” And that’s the whole thing. Informed consent doesn’t mean, “We’re going to say some things to you and then you’re going to sign a form and do what we say.” Pregnancy and childbirth aren’t just about what’s going on clinically but also about a patient’s wishes, culture, and family system. Yet, occasionally, we see doctors and hospitals getting court orders to do whatever they want. I wrote a piece for the New England Journal of Medicine in which I surveyed cases where courts analyzed whether courts had the authority to allow physicians to act against a pregnant patient’s will.
What did those cases determine?
The cases tend to fall into three camps. One view is that pregnant women have an absolute right to refuse care. Certain cases, like some from state courts in Illinois, suggest this approach. A related view is that pregnant women have a nearly absolute right to refuse care. This is the view of an important federal court — the Court of Appeals for the District of Columbia — in a case involving a pregnant woman who had a recurrence of lung cancer around her 26th week of pregnancy. Doctors wanted to do a c-section even though they weren’t certain the premature fetus would survive. The patient and her husband refused surgery. They operated anyway and she and the baby died shortly after. In that case, court determined she had the right to refuse care and if she had been too medically unstable to make that decision, then her next of kin, her husband, had that legal right. The hospital and the physicians did not.
Interestingly, the American College of Obstetrics and Gynecology Committee on Ethics tried to come up with hypothetical situations where forced care would be appropriate, and these thought leaders couldn’t come up with any scenario that would justify forcing a woman to undergo care against her consent.
What’s the third view?
In Florida, there is a state court case and a federal district court case that suggest if there’s a viable fetus and the doctor says that in order for the fetus to thrive or survive they have to do A, B or C, then the court could defer to the doctor and not the woman. In one of those cases, the patient wanted a VBAC and had a plan in place with her physician. When he changed his mind and would no longer support her decision, she decided to deliver at home with a midwife. At some point during labor, the midwife suggested she go to the hospital for IV fluids. When she got there the hospital refused to give her IV fluids unless she consented to a C-section. The mother was informed, educated, and articulate. She refused surgery, but the staff wouldn’t let her leave the hospital. Some nurses helped her sneak out and she went home. Later, she was forcibly retrieved from her home under the guise of a court order. She wasn’t arrested, so she didn’t have any criminal rights to an attorney, and doctors operated on her explicitly without her consent. She sued and lost.
The number of women who have birth-related PTSD is remarkable.
When you take away somebody’s power, you invite her to be traumatized.
What’s the most important thing you want to do to improve maternal health?
I want patients to understand their rights and to make the best knowledge-based decisions for themselves and their families. I want providers to understand the evidence and the social and psychological forces at play that influence their behavior. Then, I want them to rise above and practice in the most rational way that’s in the best interest of all patients.