Ethical questions arising from counselling in fetal complex congenital heart disease

Abstract

Fetal ultrasounds are almost routinely carried out during pregnancies in Western society. It has led to the in-utero diagnosis of congenital malformations, and in skilled hands, complex congenital heart disease which carries a significant morbidity and definite mortality. That has allowed for counselling of the affected parents who may have the option of whether to continue with the pregnancy. Such counselling, however is not without its difficulties and ethical dilemmas. They range from attempting to inform at times very distressed parents, the nature and implications of their fetal abnormality, the outcome and risks involved in the interventions which may be required, while at the same time being asked to prognosticate the long-term outcomes. Such counselling at times is based on incomplete information obtained or refers to lesions that may evolve during the rest of the pregnancy. In addition, the information provided is unable to factor in possible advances that may occur in the future which may alter the quality of life and outcomes of the affected individuals. Other members of the concerned extended family may wish to have a say in the decision making process. The clinicians themselves may wish to take into account not only the burden to the family emotionally and in terms of the possible interventions — surgical or otherwise, hospitalisations, the risks of complications, and so on — but also the financial and other costs borne by the community. This article highlights the problems encountered and raises ethical questions to encourage discussion to guide the clinicians involved.