An evidence-based overview of prenatal consultation with a focus on infants born at the limits of viability. Griswold KJ, Fanaroff JM.   Pediatrics. 2010 Apr;125(4):e931-7.  Department of Pediatrics, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA. 
http://www.ncbi.nlm.nih.gov/pubmed/20194275?dopt=Abstract
http://pediatrics.aappublications.org/cgi/content/abstract/125/4/e931

Abstract

Before the delivery of a premature infant, a prenatal consultation between parents and physicians provides the opportunity to establish a trusting relationship and create a supportive environment for decision-making concerning neonatal resuscitation. The ideal consult enables physicians to educate parents about preterm delivery and potential outcomes for their infant while providing parents with the time to ask questions and express their values. The uncertainty that surrounds many decisions in the treatment and resuscitation of infants born at the limits of viability creates a situation in which joint responsibility for decision-making between parents and physicians is vital. In this review we examine ethical considerations regarding the resuscitation of infants born at the limits of viability and present the current policies established by the Neonatal Resuscitation Program and the American Academy of Pediatrics. The parental and physician perspectives regarding the consultation experience are presented also. Finally, a model for the prenatal consultation is introduced with suggestions for the incorporation of morbidity and mortality data as well as the structure and approach to discussion with parents with threatened preterm delivery.

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Comments:

The article reviews current policies on neonatal resuscitation and discusses the inherent uncertainty of outcomes in these cases, despite treatment algorithms and tools such as SNAP (Score for Neonatal Acute Physiology) and other subjective assessments such as clinical intuition and appearance in the delivery room, both of which were not reliable predictors of outcomes . This article suggests that it is important to share the uncertainty of these outcomes with families as a way of establishing a meaningful partnership in the decision-making process.

The article incorporates the parental perspective into the discussion, emphasizing the uniqueness of each situation and how parents value religion, spirituality, compassion and hope when faced with the decision-making process and their satisfaction with the prenatal consult was more positive when they felt supported throughout the process. The importance of establishing a trusting relationship between the physician and family is crucial and multiple conferences, when feasible, is an important consideration to truly partner in this process and assess parental understanding. The article suggests using a prenatal consultation form as a checklist to ensure that expectations about decision-making are clear and that discussions are documented and shared. Ideally this form would be left with the families to help them formulate questions and have a chance to process the information. The Resuscitation and Stabilization topic group has incorporated the use of a checklist into their work – might a checklist for prenatal consult help to standardize this process and provide a written  history of  discussion and plans?  Is anyone using a form that they are willing to share, similar to the one shared in the article?

An additional article recently published discusses further the ethical implications of treatment thresholds and how these thresholds are formulated to include the most recent evidence. The article additionally contextualizes the importance of how parents are counseled in these situations.
http://pediatrics.aappublications.org/cgi/content/extract/125/4/813

Involving families in the decision-making process in these difficult situations is critical, but just as important is sharing the uncertainty of prognostic information and creating an environment where parents feel supported in their decisions. Ensuring that the information is presented in more than one way, more than one time, if possible, and without medical jargon and delivered in a compassionate environment will positively impact the experience for families in these difficult situations.  

How are centers setting the stage for positive experiences for families in these very difficult circumstances?

Joanna Celenza