Fetal therapy choices: About risks, emotions, and the doctor’s role in the decision-making process

Introduction Making good decisions prospectively is difficult. Especially when it is the perception that the stakes are high. There is often uncertainty regarding prognosis and emotions prevail both between a couple and in the interactions with their healthcare professional team. This is the case when parents have to decide about fetal therapy for congenital malformations and the health of their unborn child. Parents usually are unprepared for the often rare disease the fetus is found to have. Still in a state of shock, they receive a lot of detailed and difficult information, and need to decide on whether or not to choose the option of fetal therapy (which often carries risks of perinatal death or preterm birth as complications), expectant management, or sometimes the very difficult option of termination of pregnancy. The obstetrician or fetal medicine specialist aims to provide the parents with all the relevant factual information and to support them in their decision process. How do parents make these decisions? Are they able to process and understand this information? Do they comprehend the communicated risks and how do they incorporate the risks into their decision-making? How do emotions affect their decision-making? What is the role of physicians in facilitating this process and how can they guide the parents in this difficult decision-making process? How should they provide information about the malformations and the pros and cons of the different treatment options? These are the questions that are dealt with in this chapter. A better understanding of the decision process and parents and the role of physicians in facilitating this process is a prerequisite for being able to improve the quality of care in this respect.