Navigating Ethical Dilemmas in Fetal Medicine and Maternal Decision-Making

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• A Doctor's Duty and the Law
• Informed Consent Conversations
• Clinical Case: Fetal Aortic Stenosis
• Patient Decision Factors
• The Principle of Utility in Ethics
• Full Transcript

A Doctor's Duty and the Law

Dr. Yves Ville, MD, clarifies the fundamental principle guiding medical ethics in obstetrics. He states that doctors are not priests or philosophers. Their first duty is always to the pregnant woman. Ethics in this clinical context must follow the law of the land. This legal environment provides the structure within which doctors and patients operate.

Dr. Yves Ville, MD, explains that in Europe, particularly in France, the law is privileged. It leaves the final medical decision to a discussion between the doctor and the pregnant woman. The embryo or fetus has no legal say, as it lives through its mother. This framework, while creating difficult scenarios, allows physicians to act in agreement with the law and in a close relationship with their patient.

Informed Consent Conversations

Dr. Yves Ville, MD, details the process of having difficult conversations with patients. The core of his job is to inform the pregnant woman extremely well. This information must be delivered in a way she can understand. The physician's role is not to impose personal views but to present all options clearly.

Dr. Anton Titov, MD, and Dr. Ville discuss the spectrum of patient reactions. Dr. Yves Ville, MD, notes that for the same severe fetal malformation, women can choose vastly different paths. Some will ask to fight using the latest technology. Others will request pregnancy termination. The doctor must support both valid decisions as part of their professional duty, provided they are legal.

Clinical Case: Fetal Aortic Stenosis

Dr. Yves Ville, MD, provides a specific example to illustrate these ethical challenges. He describes the diagnosis and management of critical fetal aortic stenosis. This condition is completely amenable to ultrasound diagnosis. If severe, it can lead to hypoplastic left heart syndrome, resulting in a baby born with only one functional ventricle.

The in utero treatment option involves a high-risk procedure. Under ultrasound guidance, a needle is inserted into the fetal heart. A balloon is used to dilate the stenotic aortic valve. Dr. Ville outlines the stark statistics: a 15% immediate risk of fetal death from the procedure and an overall success rate of around 50%. This leaves a 35% chance of a favorable outcome where the left ventricle might recover. These uncertain odds form the basis of a profoundly difficult decision for the expectant mother.

Patient Decision Factors

Dr. Anton Titov, MD, asks Dr. Ville if patterns exist in how patients make these life-altering choices. Dr. Yves Ville, MD, responds that he would not describe it as a pattern. Instead, the origin of a decision is found deep within a patient's life history, childhood, and relationships. External pressures, such as a career in modeling facing a fetal facial cleft, can be a factor.

Dr. Yves Ville, MD, emphasizes that every human being is unique. For some women, a baby may represent a last chance at motherhood, influencing their choice to continue despite a poor prognosis. The physician's job is to understand these factors without being judgmental. The final choice always belongs to the pregnant woman.

The Principle of Utility in Ethics

Dr. Yves Ville, MD, introduces a key ethical concept used in these consultations: the principle of utility. This principle involves avoiding the worst possible outcome when a good outcome is unattainable. The doctor's role is to help the patient see through the options to identify what is best for her or to avoid the worst scenarios.

This approach increases the physician's scope of understanding the patient. It helps in meeting the patient's expectations during a time of immense psychological stress. By focusing on utility and clear information, Dr. Ville believes most sensible people will arrive at a decision that is right for their specific circumstances.

Full Transcript

Dr. Anton Titov, MD: Ethics in medicine is a big subject. We already discussed the diagnosis and treatment, even endoscopic fetal surgery, congenital malformations, and infections. Birth defects in a developing fetus are very difficult news for parents, for a mother especially. You have those difficult conversations with your patients daily in your clinical practice.

What are the psychological and ethical aspects of discussions about fetal surgery and congenital malformations that you have with your patients? How do you approach these conversations in your clinical practice? I see one of many books in your office, The Ethics in Obstetrics and Gynecology. It's a huge topic, but a very important topic.

Dr. Yves Ville, MD: We are not priests, and we are not philosophers. We are doctors. Our first duty is to the pregnant woman. Once you've said that, ethics has to follow the law. You're a doctor. You practice in a legal environment, and you have to follow the rules. So ethics follows the law.

If you're a philosopher or a priest, it precedes the law. If you're a doctor, you follow the law. So your ethics is very much based on your legal environment. In Europe at large, and in France in particular, we are very privileged because the law leaves the decision to the medical discussion together with the pregnant woman.

The embryo has no say, and the fetus lives through its mother. If you have those principles clear, then your job is, of course, difficult. It's never easy to terminate a pregnancy. But at least you are acting in agreement with the law and in a close relationship with the pregnant woman. She has the last say. And that's, I think, very sensible.

So if you have a severe fetal malformation, you can become in this job completely schizophrenic. Because some women in the same situation will ask you to struggle and fight up to the latest limits in technology and what is humanly possible. And others will ask you to terminate the pregnancy.

Same problem, same gestational age, same profile. And you have to take that on. Both decisions are part of your job. You like it, and you don't like it; you're free not to do it. But you cannot oppose as long as this is in accordance with the law.

Your duty is to inform her extremely well and to inform women in a way that they can understand what you're saying. You're not imposing your views. You're trying, through what you know of her by your conversation, history, or environment, to let her see through the options that would be either best for her or to avoid the worst options.

Very often, it's called the principle of utility in ethics, where you avoid what is worse. If you can't find something that is good, you can avoid what is worse. With this, you increase your scope of understanding your patient and answering your expectation. But your first duty is to the pregnant woman. And that works.

Dr. Anton Titov, MD: Is there a patient story that you could discuss that would illustrate some of the topics and conversations today? Perhaps an example or an amalgam of clinical cases from your practice?

Dr. Yves Ville, MD: I think if you are looking for those dilemmas, some are very abrupt and very schematic: a disease that is curable. One woman would ask for a termination still because she's not willing to take whatever risk is, and the other woman would like to go ahead with the pregnancy, irrespective.

For a disease that is easily treatable, like fetal anemia, you can encounter that. But if those people have to go over the shock of the announcement of the problem, you leave time, and you give information, you answer their questions. There's no reason why those people would then go and be insensible.

Most people are sensible, and you work for the majority of people. When people have a psychological or psychiatric problem, that's different, but then it becomes a maternal problem, an indication potentially of terminating or not the pregnancy.

If you are dealing with sensible people, you shouldn't encounter that much of those stories at all. But if the treatment is uncertain, and I pick on another example, which is not fetoscopy, which is ultrasound-guided. Say, the aorta of the fetus, the aortic valve is sick. You got critical aortic stenosis.

Critical aortic stenosis in early pregnancy, if this is severe, and the passage for the blood is minimal, the left ventricle will not develop. It will be hypoplastic left heart, and the baby will be born with one ventricle only, which then leads to several surgeries and nothing really like a cure. It's a life of surgeries and a life expectancy that is neither long nor comfortable.

So when you make this diagnosis, the diagnosis of fetal aortic stenosis is completely amenable to ultrasound. The options are: leave nature to have its course, terminate the pregnancy, or try to treat in utero. What we do in utero, under ultrasound, is we put the needle in the heart, in the left ventricle.

And we catheterize the stenosis of the aorta, of the valve. And we blow a balloon, the same balloons the cardiologists use for dilating coronary arteries. So you dilate the valve. And then you remove the needle.

So one, this procedure is risky. The risk of death is about 15%, straightaway. Two, this is uncertain in results because if you succeed in dilating the valve, you don't know if the dilatation will be enough for the blood to pass through and the ventricle to grow. So you need to allow several weeks after the procedure.

And with this, you can have the same clinical picture or ultrasound picture, different conversations, and completely different options. Some women would say, "Sorry, you told me that the success rate was 50%, the risk of the fetus to die from the procedure is 15%. So altogether, I'm left with a 35% of favorable outcome." And the baby might need a dilatation after birth, and we hope that will be enough. I'm not taking that.

Another woman would say, you've told me that this ventricle was already fibrotic, that the risk of death is 15%, and the risk of success is 10-20%. But I want to do everything I can for this baby. And if the baby dies afterward, right? And some people would say, "Oh, 15% risk of death. I'd rather do nothing." Even if the probability that this heart can be put on its own feet, so to speak, with two ventricles is 5%.

So again, this is a job for schizophrenic people. And you don't have to be judgmental. Just explain. Make sure people have understood everything and just follow the woman; it's her pregnancy. And that's potentially her baby or not.

Dr. Anton Titov, MD: Can you categorize the people, your patients, pregnant women who are more likely to take these very diverse, potentially three decisions? Are there any trends? Is there any system that you see? Or could it be a complete surprise coming out from any type of person? Are there any patterns that you see?

Dr. Yves Ville, MD: Patterns? I wouldn't describe it as a pattern. But if you dig deep enough into their life, their history, their childhood, their relationship, you can find the origin of that decision. Sometimes it's easy.

You know, if you take—it's a caricature again—but you have a fetus with a facial cleft. And this woman is a model. Why has she become a model? What was the pressure on her? Can she cope with a fetus with a facial cleft? Probably, generally. But it doesn't mean individually.

But generally, that will be more difficult for this woman than for a woman who has no outside influence on her behavior and appearance, no pressure, and for whom that baby will be the last chance to have a baby, for example. You can't have a pattern. You have factors, always somewhere, deep enough, sometimes very easy to understand, sometimes very deep, that would build their decision. And that's the definition of a human being.

Dr. Anton Titov, MD: Professor Yves Ville, thank you very much for your time and thank you for sharing all the important information, also more than information about the ethics of decisions and the difficulties that physicians like yourself face everyday. But you help so many people in very difficult situations. We hope to revert to you in the future for more information. Thank you!

Dr. Yves Ville, MD: Thank you.