Parental Refusal of Surgery in an Infant With Tricuspid Atresia

Abstract

We present a case of a fetal diagnosis of tricuspid atresia (TA). The 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.

The Meaning Given to Bioethics as a Source of Support by Physicians Who Care for Children Who Require Long-Term Ventilation

“…Much of the research into bioethics services are from single-center sites, for example, Gold et al (2011) , Jansen et al (2018) , McDougall and Notini (2016) . Kon et al (2016) describe physicians’ criticism of bioethics for not providing an answer, or not having the right answers in challenging situations. A survey by Bucher et al (2018) , found that nearly half of the health professionals in PICU considered hospital bioethics services to be the “ultimate decision maker,” compared to one tenth who felt that this role should be carried out by the physicians, and just over a third who felt that it was the parents who had the final say.…”

“…One way of acknowledging this need for pragmatism is the use of what has been termed the parental zone of discretion ( Lantos, 2018 ). Where a treatment cannot be ethically determined as providing clear benefit, or clear harm, then a pragmatic decision must be made either in terms of the child’s right to treatment, or by following the choices of the parents ( Kon et al, 2016 ). However, in practice, the optimal choice can be difficult to determine, and trust in all those involved is essential.…”

Tricuspid atresia: Where are we now?

“…| 1613 long-term complications associated with a Fontan circulation, some parents prefer end-of-life care at a younger age. 59 In their view, this prevents the prolongation of their child's suffering, however, this remains a highly controversial issue. 59…”

“…59 In their view, this prevents the prolongation of their child's suffering, however, this remains a highly controversial issue. 59…”

“…It is important that clinicians fully explain the outcomes of the Fontan procedure, as this may influence the parent's decision to consent to this operation. It has been reported that due to the long‐term complications associated with a Fontan circulation, some parents prefer end‐of‐life care at a younger age 59 . In their view, this prevents the prolongation of their child's suffering, however, this remains a highly controversial issue 59 …”