Shared decision making and the pathways approach in the prenatal and postnatal management of the trisomy 13 and trisomy 18 syndromes.

The medical management of infants with the trisomy 13 and trisomy 18 syndromes is challenging and controversial. Both conditions have high neonatal and infant mortality, and surviving children display significant cognitive and motor disabilities. Currently, there exists a tension in the neonatal and perinatal communities regarding care. One view holds that management should consist solely of comfort care, while another opinion recommends offering medical and surgical intervention in appropriate situations. The purpose of this manuscript is to present a model for the care of fetuses and infants with trisomy 13 and 18 during the prenatal, perinatal, and postnatal periods. Adopting the pathways approach as a framework, we have identified several pertinent decision points, characterizing the goals of care and the resources needed for the decision points at various times. Additionally, we identified themes surrounding parental and professional experiences. The authors propose a care model for trisomy 13 and 18 that uses shared decision making as its foundational principle and the pathways approach as the method. Our model requires further investigation as a strategy for care in order to render it useful in other complex medical situations. © 2016 Wiley Periodicals, Inc.

Talking about the unthinkable: perinatal/neonatal communication issues and procedures.

Clinician-parent conversations in perinatology and neonatology are demanding. They take place over a period of time and ask much of the clinician. Many parents insist that they want thorough explanations so they can understand the medical information and its impact on them. These cases involve copious amounts of medical and resource information and parents cannot assimilate it all at one time; thus, these conversations are extended dialogs. Conversational skills that seem essential for clinicians in this work include giving bad news, sharing information, and expressing empathy. Underlying the conversational skills are those habits that form the complete physician: curiosity that leads one to learn the parents' values; the skill to help parents apply these values as they make difficult decisions; patience to listen to and stick with these suffering people who are full of strong emotions; and finally, the courage and endurance to confront these difficult situations day after day.