Importance: Patient-centered care (PCC) has been advocated by the Institute of Medicine to improve health care in the United States. Four concepts of PCC align with clinical ethics principles and are associated with enhanced patient/parent satisfaction. These concepts are dignity and respect, information sharing, participation, and collaboration. The objective of this article is to use the PCC approach as a framework for an extensive literature review evaluating the current status of counseling regarding prenatal diagnosis of trisomy 18 (T18) or trisomy 13 (T13) and to advocate PCC in the care of these infants.
Observations: Extensive availability of prenatal screening and diagnostic testing has led to increased detection of chromosomal anomalies early in pregnancy. After diagnosis of T18 or T13, counseling and care have traditionally been based on assumptions that these aneuploidies are lethal or associated with poor quality of life, a view that is now being challenged. Recent evidence suggests that there is variability in outcomes that may be improved by postnatal interventions, and that quality-of-life assumptions are subjective. Parental advocacy for their infant's best interest mimics this variability as requests for resuscitation, neonatal intensive care, and surgical intervention are becoming more frequent.
Conclusions and relevance: With new knowledge and increased parental advocacy, physicians face ethical decisions in formulating recommendations including interruption vs continuation of pregnancy, interventions to prolong life, and choices to offer medical or surgical procedures. We advocate a PCC approach, which has the potential to reduce harm when inadequate care and counseling strategies create conflicting values and uncertain outcomes between parents and caregivers in the treatment of infants with T18 and T13.