Parental Refusal of Surgery in an Infant with Tricuspid Atresia Alexander A

Parental Refusal of Surgery in an Infant With Tricuspid Atresia Alexander A. Kon, MD, a Angira Patel, MD, MPH, b Steven Leuthner, MD, MA, c John D. Lantos, MDd We present a case of a fetal diagnosis of tricuspid atresia (TA). The abstract pregnant woman and her husband requested that the baby be treated with only palliative care. The cardiologist did not think it would be appropriate to withhold life-prolonging surgery once the infant was born. The neonatologist argued that outcomes for TA are similar to those for hypoplastic left heart syndrome, and the standard practice at the institution was to allow parents to choose surgery or end-of-life care for those infants. The team requested an ethics consultation to assist in determining whether forgoing life-prolonging interventions in this case would be ethically supportable. In this article, we ask a pediatric intensivist, a pediatric cardiologist, and a neonatologist to discuss the ethics of withholding life- sustaining treatment of a baby with TA. a Naval Medical Center San Diego and the University of California San Diego School of Medicine, San Diego, California; bLurie Children’s Hospital, Chicago, Illinois; cMedical College of Wisconsin, Milwaukee, Wisconsin; and Advances in fetal diagnosis now allow expert commentary on the ethics from dDepartment of Pediatrics, Children’s Mercy Kansas City, couples who are having a baby to an intensivist, a cardiologist, and a Kansas City, Missouri anticipate the decisions that will need neonatologist, all of whom are also All authors contributed to the design of this article to be made after birth. If the prenatal bioethicists. and the drafting and review of the manuscript, diagnosis is made early enough in and all authors approved the fi nal manuscript as pregnancy, then 1 option may be submitted. to terminate the pregnancy. When The views expressed in this article are those of the pregnancies are carried to term, then THE CASE authors and do not necessarily refl ect the offi cial policy or position of the Department of the Navy, the choices might be necessary about Department of Defense, or the US Government. whether to pursue life-sustaining A young married woman was DOI: 10.1542/peds.2016-1730 treatment or, instead, to provide only pregnant with her first child. During comfort-oriented palliative care. In routine prenatal care, an ultrasound Accepted for publication May 24, 2016 the abstract, the ethical principles that was performed and there was concern Address correspondence to John D. Lantos, MD, should guide such decisions are clear. that the child might have congenital Children’s Mercy Hospital, 2401 Gillham Rd, Kansas City, MO 64108. E-mail: [email protected] If the treatment is clearly beneficial, heart disease. A fetal echocardiogram then the baby’s right to treatment was performed at ~24 weeks’ PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). should outweigh parents’ right to gestation that revealed tricuspid refuse. If, instead, the outcomes atresia (TA). The cardiologist met Copyright © 2016 by the American Academy of Pediatrics that are anticipated with treatment with the parents to discuss their son’s are ambiguous or uncertain, then condition, explaining the standard FINANCIAL DISCLOSURE: The authors have surgical approach and long-term indicated they have no fi nancial relationships the parents’ choices determine the relevant to this article to disclose. course of action. In practice, those prognosis. At home, the parents FUNDING: No external funding. principles are difficult to apply. researched the proposed surgery on Doctors may disagree about whether the Internet and learned that many POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential confl icts of a particular treatment of a particular parents decline this surgery. At their interest to disclose. condition is sufficiently successful so next appointment, the couple told the that parental refusal should not be cardiologist that they did not want permitted. Tricuspid atresia (TA) is 1 their baby to get the surgery and To cite: Kon AA, Patel A, Leuthner S, et al. Parental such condition. In this Ethics Rounds, instead would focus on making him Refusal of Surgery in an Infant With Tricuspid Atresia. Pediatrics. 2016;138(5):e20161730 we present a case of TA and seek comfortable. Downloaded from www.aappublications.org/news by guest on September 28, 2021 PEDIATRICS Volume 138 , number 5 , November 2016 :e 20161730 ETHICS ROUNDS The perinatal team, including to overrule parents only when have feeding difficulties and high the cardiologist, neonatologist, parents make decisions that are caloric requirements for growth, obstetrician, and others, met to clearly contrary to the infant’s best so a gastrostomy tube is often discuss the case. The cardiologist interests. 1, 2 Merely disagreeing with needed to maintain adequate intake. voiced concerns about the father’s parents’ values and preferences is Potential complications of multiple decision, stating that she did not insufficient. This standard requires cardiac surgeries necessitating think it would be appropriate to that providers intervene only cardiopulmonary bypass include withhold life-prolonging surgery when parents make choices that heart failure, arrhythmias (which once the infant was born. The are inconsistent with decisions may necessitate pacemaker neonatologist argued that outcomes reasonable people would make. placement), and stroke with resultant for TA are similar to those for neurologic deficits. Furthermore, Providers lack the authority to hypoplastic left heart syndrome infants with SVs have a shorter than unilaterally overrule parents who (HLHS), and the standard practice at average life expectancy because of decline life-prolonging interventions the institution was to allow parents early heart and liver failure. Because (except in rare, emergent situations). to choose surgery or end-of-life infants with TA generally have an When providers believe that parents (EOL) care for those infants. Based adequately sized left ventricle, in are clearly acting contrary to the on the principle that equal patients contrast to infants with HLHS, there infant’s best interests, they may seek should be treated equally, he argued may be reason to believe that infants a court order to provide therapy that allowing the parents to decline with TA would be less likely to need that they believe is necessary and surgery would be appropriate. cardiac transplantation later in life appropriate. The decision to seek The team requested an ethics than infants with HLHS; however, a court order should not be made consultation to assist in determining there are insufficient data to draw lightly. In general, courts are more whether forgoing life-prolonging firm conclusions. willing to authorize treatment over interventions in this case would be parental objection if the treatment is As noted by the obstetrician, the ethically supportable. of short duration, there is consensus standard for infants with HLHS in the medical community regarding generally is to allow parents to Alex Kon, MD, Pediatric Intensivist, Comments the medically appropriate treatment, choose either life-prolonging the prognosis with treatment interventions or EOL care. In the When making life-and-death choices is favorable and there is a high case of HLHS, the option of EOL for an infant, parents and providers likelihood that the child would have care is generally considered must consider primarily the infant’s a relatively normal life, and without ethically permissible because best interest. 1 However, such treatment there is a high likelihood surgical outcomes are suboptimal decisions are highly value laden. that the child would die. With this (5-year survival is ~80%, 4 – 7 Different parents, and different understanding, we turn to the case at and there is significant risk of providers, may judge the same hand. neurodevelopmental and other situation very differently. To some, disorders among survivors8 – 15), Infants with single-ventricle (SV) the benefits of prolonging life, experts in the field are divided physiology such as TA and HLHS even for a short time in the face of between favoring life-prolonging whose parents choose life-prolonging significant morbidity, outweigh the interventions or EOL care, 16 –18 interventions follow a similar burdens of even significant suffering. and many believe that infants with surgical course. Both cardiac lesions For others, minimizing suffering is a HLHS endure significant suffering warrant surgical intervention more important goal than prolonging throughout their treatment course. within the first few days of life that life. In such cases, there is often no For these reasons, although there includes placement of a surgical single right answer. Furthermore, remains debate about appropriate shunt to supply pulmonary blood although the best interests of the care for infants with HLHS, 19 – 21 flow (note that experts continue to infant are central in decision-making, in general parents are given the develop new surgical and hybrid the interests of the parents, siblings, choice between life-prolonging approaches for initial management). and other may also be considered. 2, 3 interventions or EOL care. The initial surgery is usually followed The American Academy of by ≥2 additional cardiac surgeries, Surgical outcomes for infants with Pediatrics recognizes that most such generally including a bidirectional TA are similar when compared with decisions fall into a gray area in cavopulmonary

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