Before the advent of fetal ultrasound, nature was the only entity responsible for unveiling the mystery of pregnancy. The widespread use of advanced fetal ultrasonography has given expectant mothers information which can deliver feelings of reassurance and comfort, and at worst times, trepidation and despair. The clear, stirring image of a life in utero has changed the way health professionals comprehend the prenatal world. Besides making the fetus visible to practitioners, technology has heightened the range of diagnostic possibilities of fetal anomalies. The end result is the complex field of fetal intervention and surgery, and along with it, the corresponding complicated moral and ethical dilemmas. Consider the case of Maria (real name withheld), who, at 30 years old, became pregnant for the first time and underwent a routine prenatal ultrasound. The initial ultrasound at 14 weeks showed Maria was carrying twins, baby A and baby B. At 26 weeks gestation, baby A seemed normal, however, baby B showed evidence of congenital hydronephrosis secondary to unilateral ureteral obstruction. Harrison and Adzick (1991) described possible devastating and fatal consequences for the developing fetus with a severe bilateral obstruction due to renal failure from hydronephrosis, as well as pulmonary failure related to lung hypoplasia. Because Baby B has a unilateral obstruction, the physicians in the case recommended surgical treatment after delivery. Against her physicians’ recommendations, Maria requests fetal surgery be done immediately, after learning about fetal surgery on the internet.
Brief history of fetal surgery Fetal surgery began in the United States over three decades ago after extensive animal experiments and innovative technological advances. Led by Dr. Michael Harrison, the “father of fetal surgery,” fetal therapy provided the earliest possible intervention for certain fetal anomalies (Smajdor, 2011). Even with today’s progressive imaging, only a few fetal defects are amenable to surgery, with even fewer fetal therapy medical centers (Harrison, 1993 & 1996; Flake, 2003). Harrison warned members of the medical community to proceed with caution even as the promise of fetal therapy intensifies because failure to do so can lead to disastrous consequences for everyone involved. It is essential that practitioners recognize that the focus of any fetal intervention is not the fetus, but it is the maternal-fetal unit, of which maternal health and safety is paramount (Harrison & Adzick, 1991). The complex issue of fetal surgery invariably leads to moral and ethical dilemmas as illustrated in Maria’s case. In this assignment, the four quadrants approach in ethical decision making by Jonsen, Seigler, and Winslade (2006) will be applied. The ultimate goal is aimed towards a shared decision-making whereby the physician/s shares with Maria their medical knowledge and opinion, and Maria in turn, shares her values and preferences (Jonsen, et al, 2006). The order of analysis is as follows: medical indications, patient preferences, quality of life, and contextual features.
Medical Indications The primary medical indication that need to be addressed in Maria’s case is her pregnancy at 26 weeks gestation. Her twin pregnancy, combined with the presence of a fetal abnormality in one of the fetuses, has an added risk of premature labor and birth and an increased possibility of perinatal mortality and morbidity (Paris & Harris, 2001; Alexander, Ramus, & Cox, 1997). Fetal surgery is not without risks to the mother. Maternal physiological repercussions of fetal intervention can include significant morbidity such as premature rupture of membranes, uterine rupture in labor, mandatory cesarean sections, pulmonary edema, prolonged hospitalization in intensive care, blood transfusions, and tocolytics to prevent preterm labor (Flake, 2003; Golombeck, et al., 2006; Harrison & Adzick, 1991). Moreover, Baby B presents with unilateral ureteral obstruction with normal amniotic fluid volume, normal fetal echocardiogram, and mild hydronephrosis. The prognosis of severe fetal urinary tract obstruction with oligohydramnios is grim and incompatible with life (Antsaklis, 2004; Adzick & Harrison, 1994). Fortunately for Maria, Baby B’s prognosis of unilateral urinary tract obstruction is hopeful. According to Adzick and Harrison (1991), “the fetus with unilateral disease of any type with a normally functioning contralateral kidney can be managed conservatively because the disease is not life threatening” (p. 281). In this case, open fetal surgery is not necessary, and Maria should be followed by serial ultrasound examinations. Treatment for Baby B, if any, is recommended after birth. The primary goal of medical management is maternal health and safety, followed by successful delivery of healthy babies. This goal can be achieved by prevention of fetal surgery, by provision of exemplary prenatal care, and postnatal surgical treatment to the correctable anomaly. Provision of comprehensive serial monitoring would provide a substantial probability of success for all. On the basis of this detailed information, Maria and her husband are empowered to reach an autonomous decision. On the other hand, Maria and her husband’s insistence of immediate fetal surgery can produce calamitous results for Maria and her fetuses. Harrison (1993) asserted that the intrusion of fetal surgery dramatically exacerbates the risk for all involved. Although prenatal diagnosis of fetal malformations have become a catalyst for prenatal intervention, the small community of surgeons and physicians in this field have provided guidelines for fetal intervention. Determination of medical indications for fetal surgery is a complex and arduous process. The experts reported that fetal surgery is only justifiable on the following principles: First, the pathophysiology and natural history of the disease is well understood. Secondly, the prenatal diagnosis should be accurate, excluding other anomalies, and able to predict which fetuses have a significantly dire prognosis. Thirdly, the disease, if left untreated in utero, would produce fatal results or severe morbidity for the unborn child. And lastly, fetal surgery is justifiable if the risk to the mother is acceptably low (American Association of Pediatrics [AAP], 1999; Chervenack & McCoullough; 1993; Smajdor, 2011). At this juncture, the physicians recommend fetal intervention for Baby B is not medically indicated because the risk is too high for Maria and the healthy fetus.
Patient Preferences Patient preferences are significant to the analysis of ethical problems because it represents the value of personal autonomy (Jonsen, et al., 2006). Maria demonstrates decisional capacity and competency to give consent. Once she presented her fetuses for care, Maria has already decided that she wants to maintain her pregnancy and consents to the care for her fetuses. Given that Maria and her husband indicated they read about fetal surgery through the internet, it is entirely possible they are not aware of the complexity of the procedure. Maria’s insistence that surgery proceed may stem from the imperative to “do something” but she may be unaware of the corresponding risk to herself and the healthy fetus. However, only the gravest conditions can justify fetal surgery (Doyal & Ward, 1998). Chervenack and McCullough (1993) contend that a pregnant woman’s right to make decisions regarding health and welfare is based on body integrity, self-determination, and right to privacy. The physicians involved have to show respect for Maria’s autonomy as well as acknowledge her values in life, elicit her preferences, and assist her in putting them into effect within the strict guidelines of fetal surgery. At this point, a complete, truthful and sensitive disclosure becomes a significant element in Maria’s case. Within the context of informed choice, practitioners are expected to present the risks, side effects, and uncertainties involved in the risky procedure of fetal surgery (Williams, 2006). It is important for Maria’s psychological well being that consideration be given to her preferences because she may have a vital need for a sense of control for her precarious situation (Jonsen, et al., 2006). Involvement of a heath care team with a common goal of maternal safety may be necessary to communicate directly with Maria and assure that the information regarding risks and possible outcomes is understood in order for Maria to make an informed decision. The team will consist of consulting physicians including fetal medicine specialists, pediatrician, obstetrician, surgeon, neonatologist, and specialized nurses. Clinicians have to be mindful of conveying actions of paternalism and coercion because both are an unacceptable infringement of the mother’s personal autonomy, and undermines her trust. (Flager, Baylis, & Rogers, 1997). Jonsen, et al. (2006) state that the scope of disclosure also includes the plan if treatment is withheld, alternatives open to the patient, and a recommendation based on the team’s best judgment. Maria’s resistance to follow her team of physicians’ recommendation may be rooted in her sense of altruism to Baby B. Parris and Harris (2001) pointed out that mothers feel that they have a moral, or duty-based, obligation to their fetus, and, women go through extreme measures to protect and insure the health of their future child. According to Flake (2003), it is normal for some pregnant women to demand surgery even if it is too high risk and not medically indicated as a result of maternal duty. Williams (2006) admitted that there are times when patient demand is extremely difficult and almost impossible to restrain. Finally, Smajdor (2011) provided another insight to the mother’s insistence for surgery. Smajdor explained that it is psychologically easier for the mother to “do” something about the situation, rather than merely waiting. Although Maria’s preferences have a significant moral authority, it is not without its limits (Jonsen, et al., 2006). Clinicians have an ethical obligation to “do no harm” and act in the best interest of their patients, including refraining from unnecessary fetal surgery. Consequently, the ethical principles of beneficence and maleficence take precedence over patient autonomy. The AAP (1999) maintains a straightforward position regarding the limits on what constitutes an acceptable assumption of risk: “under circumstances when the risk to the mother is high and the benefit to the fetus is remote, physicians may refuse to offer such an intervention despite a pregnant women’s insistence that something be done” (p.1061).
Quality of Life Evaluation of one’s quality of life is not an easy task because of its subjective and multi-dimensional nature. The fundamental goal of those who seek medical care is an improvement in their quality of life (Jonsen, et al., 2006). The physicians in this case agree that it is in the best interests of Maria and her fetuses to wait and follow a committed prenatal and postnatal plan of care and treatment. Even with premature labor and delivery, Maria and Baby A have a high probability of returning to a normal healthy life. On the other hand, Baby B faces the possibility of mild hydronephrosis, which is reversible with surgical intervention after birth (Harrison & Adzick, 1994). Thus, Baby B’s future remains hopeful, and without limitations.
Contextual Features Jonsen’s et al., (2006) final quadrant reviews the social, legal, economic, and institutional factors and their relevance to the case at hand. It is important to note that the Maria’s decision is mainly built on personal, familial, and religious and cultural background and her understanding of the diagnosis and prognosis of her pregnancy (Schechtman, Gray, Baty & Rothman, 2002). Superior medical counseling is imperative for a judicious decision-making process to occur. Maria’s family may influence her decision when they are presented with the risks and collaborate with the health team’s recommendation. Additionally, other members of the health care team may have personal biases that need to be explored. Brown and his colleagues (2008) warn clinicians that concern for the well-being of the mother and her fetus can overlap considerably. For some clinicians, the fetus may be seen as the patient, and they may forget that their primary duty is to the pregnant mother. Moreover, with the development of a detailed ultrasound imaging, it is considerably difficult not to envision the fetus as a patient (Chervenack & McCullough, 1993; Flager et al., 1997). Other members of the health care profession may question the moral status of the fetus, and critique the notion of the fetus as a patient. They argue that the fetus does not have the same rights as an evolved human being (Lyerly, Little, & Faden, 2008). Whether the moral status of the fetus is in question or not, the health care team members should agree that since Maria has presented her fetuses for care, then everyone have a beneficence-based duty towards the fetuses. Another aspect of contextual features is the financial and economic implications of fetal surgery, which are extremely costly (Smajdor, 2011). There may be strains on resources due to the limited treatment centers available. Legal concerns may arise if Maria continues to pursue fetal surgery after extensive medical counseling. As stated previously, physicians can refuse surgical intervention if the maternal risks outweigh fetal benefits. Lastly, in terms of clinical research, fetal surgery was considered an experimental therapy in its formative years (Flake, 2003). In fact, Smajdor claims only few studies have measured long term outcomes of women who chose to participate in this highly innovative procedure.
Recommendation
The application of the four quadrants approach has identified the major issue in this case, which is Maria’s request for fetal surgery against medical advise. In light of the complexity of her situation, it is possible that she was unaware of the possible disastrous consequences of fetal surgery. Based on this approach, the advanced practice nurse (APN) would recommend forgoing surgical intervention, with the knowledge that comprehensive maternal and family support and counseling is imperative throughout the rest of Maria’s pregnancy. APNs frequently encounter ethical dilemmas, and through education, and preparation, have the necessary skills to counsel Maria to make the best decision on behalf of herself and her future family.