Information came at the Janes from all directions. The team of experts explained that, without normal mobility, the newborn's chest wall would be locked in place, making breathing after delivery impossible. Without immediate respiratory assistance by intubation, the infant could suffer permanent neurological injury from hypoxia. There was more: the fetus's abnormally small chin might interfere with intubation, requiring multiple attempts to successfully place the breathing tube.
The neonatologists told the Janes that there was neither a cure nor a therapy to prevent this devastating outcome. However, an option existed that might be used. An innovative procedure called ex utero intrapartum treatment, or EXIT, had been developed to deliver infants with severe neck and chest anomalies. During EXIT, the newborn is delivered in a manner similar to caesarian section, but the umbilical cord is not immediately cut. Instead, the maternal-fetal connection remains intact until the newborn is intubated, for as long as several minutes if needed.
EXIT is not a routine procedure, so a multidisciplinary medical team would be involved. Obstetricians would perform the high-risk surgical delivery and manage its associated complications (including the potential for massive maternal hemorrhage). Neonatologists would intubate and assess the newborn after delivery. EXIT requires general anesthesia, so two teams of anesthesiologists--one for the mother, and one for the newborn--would also be on hand. Finally, bioethics consultants would help to identify and resolve any ethical issues arising.
The team cautioned that the EXIT procedure would not guarantee the newborn's survival. Though used successfully for a handful of other indications, EXIT had never been performed on a fetus with arthrogryosis. Nevertheless, the neonatologists hoped for a promising outcome, and no matter what happened, they believed the procedure might help the couple feel that they had done everything possible for their child.
The Janes were also informed of the risks. They understood the serious and potentially deadly danger to the mother of hemorrhage and complications from general anesthesia. But the concern that weighed most heavily on their minds was the real possibility that, despite the best efforts of the medical team and the use of EXIT, their baby might still die shortly after birth, and Mrs. Jane, unconscious from the anesthesia, might miss the few fleeting moments of their daughter's life.
It was at this juncture in the conversation that I met the Janes. I was one of two bioethics consultants involved. As both an obstetrician/gynecologist and a bioethicist, I am in a unique position to help. In the course of my work, I have developed skills that can help orient patients and health care providers lost in the thicket of the complex ethical issues that often accompany reproductive and maternal-fetal medicine.
I've found that maternal-fetal issues tend to provoke strong dichotomous opinions. Positions often become polarized, and conversations devolve into stalemates pitting the rights and interests of the mother against those of the developing fetus. Discussions touching on the subjects of life, reproduction, and rights can quickly move from constructive to destructive, leading everyone astray. In a sense, a bioethics consultant's mission is to serve as a guide for patients, families, and providers, helping them calmly chart a course through the difficult ethical terrain of twenty-first century medicine.
Like many practitioners, I have particular tools available to help navigate such ethically challenging situations. The most trusted item in my toolkit is the process of informed consent. This is for me a compass, which I rely on to find true north when the fog of conflict rolls in. It is critically important in maternal-fetal cases, when diverging perspectives and priorities can result in a maze of different medical recommendations.
In the Janes' case, the compass needle pointed me toward the fundamental principles of respect for persons and autonomy--the two cornerstones of informed consent. The importance of informed consent does not diminish in pregnancy. A pregnant patient has the same interests and liberties to make autonomous decisions about her health care as other women do. Like all patients, she must weigh the benefits of a medical intervention against its risks to make a decision. In pregnancy, however, the decision-making process becomes more involved, as a pregnant woman must also consider how her choices affect the health of the fetus. Such risk-benefit computations are further complicated by rapid advances in maternal-fetal medicine that expand the boundaries of viability and ex utero life. When dealing with maternal-fetal issues, it is often difficult--if not impossible--to accurately predict outcomes. Many times, benefits and risks are mere abstractions until after the proposed medical procedure has been undertaken.
Staying true to the course set by my compass, I was prepared to make my recommendation: respecting Mrs. Jane's autonomy meant advising her to accept or decline the EXIT procedure regardless of the effects it might have for her fetus. Just as pregnant women have the right to make decisions to accept treatment, they also have the right to refuse it. If this results in lack of benefit or even harm to the fetus, the decision can be troublesome. Nonetheless, I think it is important to protect a pregnant woman's right to informed refusal even when, as a physician, I don't necessarily agree or feel comfortable with the decision. This is because I recognize the grave harm that can result from restricting a competent woman's basic rights when she's pregnant. Making exceptions to the concepts of respect of persons and autonomy begins a path down a slippery slope, where the rights of women gradually disappear and are replaced by surrogate decisions based on assumptions of best interests.
Furthermore, as an obstetrician, I have experienced firsthand how conceptual risk becomes very real in a delivery suite or operating room. Each clinician has at least one sentinel experience that brings her face to face with the mortality of her patient. Mine was with a young mother who nearly bled to death after delivering her baby, despite the use of every medical and surgical procedure available. This experience has become a guidepost for me when I counsel patients about medical risk. Considering the magnitude of the risks that Mrs. Jane would be taking on with the EXIT procedure, I was willing to be her advocate for whatever choices she was about to make.
I was surprised to discover how much my clinical experiences had helped me draw my bioethical map in this case. At first, this realization did not seem out of place. Bioethics is, by nature, a multidisciplinary field. As bioethics consultants, we use our empirical backgrounds in science and philosophy to guide patients, families, and health care professionals through the ethical dilemmas of medicine. At the same time, we also rely on our repertoire of personal and professional experiences to shape how we view perspectives, mitigate conflict, and make recommendations. However, as this case unfolded, I began to question whether the professional experiences of bioethics consultants generate biases in how we answer those who turn to us for advice, and more importantly, if these biases could have an unfavorable influence. Was I the only clinician-bioethicist to find myself in this situation?
I considered the recommendation of my fellow bioethics consultant. He believed Mrs. Jane's refusal of the EXIT procedure would be acceptable only if it did not pose an unreasonable risk or burden to the newborn. We both carried the same compass, but our needles had been drawn in different directions. The well-being of the mother and the developing fetus were shared priorities. However, while my compass pointed toward maternal autonomy, my colleague's was oriented to the interests and protection of newborns. As a pediatrician, his clinical toolkit contained cases of critically ill newborns who survived in the face of the bleakest of prognoses. With such a divergence of professional opinion, how could we, as bioethics consultants, come to a consensus about the best way help this family in the face of their critical decision?
The diversity of different consultants' perspectives can bring a richness and depth to clinical consultation, but in this case, our divergent experience brought us to an impasse. I began to question the degree to which professional background should influence the guidance of a bioethics consultant. Is there one true north? If not, what should I do when the needle on my compass points in a different direction from those of my colleagues? Can our expert knowledge lead us toward the course we think best but cause us to drift further away from the patient's desired destination?
It would be a shame if the very experience that makes us good guides also biases us against the goals of our fellow travelers. One option may be to ask bioethics consultants to disclose any potential conflict of interest or recuse themselves from involvement when the consultant has professional experience with the medical aspects of case under question. However, I think a better approach is to draw from the strengths of our clinical experiences to assist our patients and colleagues through the challenges that modern medicine presents, but to be vigilant about how professional and personal experiences may influence our advice.
The Janes carefully considered their options, values, and goals. Although they had been offered the opinions of both consultants, they ultimately chose their own path. Their decision was based not on issues of maternal rights or fetal interests, but on their deeply felt family values. They knew that the immediate postoperative period might be the only opportunity to experience the joys and sorrows of parenthood. They did not, and could not, know if they would have moments or years with their daughter.
In traveling from their fateful ultrasound to a conference room full of medical experts, they discovered that for them, "doing everything" meant knowing when to do nothing. Instead of functioning as a way to allow the newborn to breathe after delivery, the EXIT procedure was to them a barrier to their fleeting chance to be a family. If the infant had only minutes to live, the new mother and father wanted to fully experience those minutes together.
One week later, the couple held the hand of their newborn daughter as she slipped away.
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|Title Annotation:||in practice; bioethicist-patient relation|
|Author:||Farrell, Ruth M.|
|Publication:||The Hastings Center Report|
|Article Type:||Personal account|
|Date:||Mar 1, 2009|
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