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J Palliat Med. 2019 Nov;22(11):1337-1345. doi: 10.1089/jpm.2018.0596. Epub 2019 May 7.

Birth Planning in Uncertain or Life-Limiting Fetal Diagnoses: Perspectives of Physicians and Parents.

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Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.
Division of Neonatal and Pulmonary Biology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Department of Anesthesiology, University of Cincinnati College of Medicine, Cincinnati, Ohio.
Division of Pain and Palliative Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
St. Elizabeth Hospice, St. Elizabeth Healthcare, Edgewood, Kentucky.


Background: Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition. Objective: The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans. Methods: The study design involves mixed-methods, descriptive, exploratory survey. This involves parents (n = 20) of a pregnancy complicated by a life-limiting diagnosis and providers who care for them (n = 116). The approach involves descriptive and univariate analyses for quantitative data and thematic analysis for qualitative data. Results: Consistent components for families and physicians were diagnosis and medical management of the infant. Families gave greater emphasis on memory-making preferences. Parents feel birth plans give them a sense of control. Themes emerged from parents' experience of creating a birth plan are as follows: sense of control, therapeutic, memory making, effective communication, feeling prepared, and unexpected events. Most physicians feel comfortable discussing goals of care with families but report insufficient time. The importance of components of birth plans and perception of the parents' understanding of the prognosis varied by specialty. Discussion: Birth plans are beneficial and provide a greater sense of control for parents. Most physicians feel comfortable utilizing them. More than one-third of the physicians do not feel that they have time to complete a birth plan with parents. Communication between physicians and families about limitations of the plan and the potential trajectories could be improved. Communication between maternal and neonatal care providers regarding parent expectations and understanding could also be improved.


birth plans; lethal prenatal diagnosis; neonate; perinatal palliative care


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