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Life-limiting fetal conditions and pregnancy continuation: parental decision-making processes
  1. Erin Denney-Koelsch1 and
  2. Denise Cote-Arsenault2
  1. 1 Medicine, University of Rochester Medical Center, Rochester, New York, USA
  2. 2 School of Nursing, Saint Louis University, Saint Louis, Missouri, USA
  1. Correspondence to Dr Erin Denney-Koelsch, Medicine, University of Rochester Medical Center, Rochester, NY 14642, USA; Erin_Denney{at}


Objectives When parents are facing a life-limiting fetal condition (LLFC), decision making about prenatal and neonatal care is very stressful. To participate in successful shared decision making, interdisciplinary care teams need to understand factors that parents consider and the process by which they make decisions about care of their baby.

Methods This study reports on findings about parental decision making from a larger longitudinal, naturalistic study of parents’ experiences of continuing pregnancy with an LLFC. Mothers and fathers over 18 were interviewed in person, on phone or via video, twice during pregnancy and twice after birth and death. Transcripts were professionally transcribed and verified. Data were analysed with iterative coding and theme identification, using within-case and cross-case comparison.

Results Thirty parents (16 mothers, 13 fathers, 1 lesbian partner) from multiple US states and a range of racial/ethnic backgrounds were interviewed. Parents’ experience with decision making was difficult, stressful and time-sensitive. They described a three-phase process: (1) identifying the decision to be made, (2) conducting a risk–benefit analysis to weigh objective medical information and subjective factors (values and spirituality, impact on self, partner, baby and the other children) and (3) making a decision. Parents considered diagnostic and prognostic certainty, likelihood of a good outcome and avoidance of suffering and regrets.

Conclusion For shared-decision making, healthcare providers must discuss objective medical information as well as recognise parents’ subjective values and priorities. This study expands on the literature on parental decision making around the numerous types of decisions after LLFC, informing obstetrics, neonatology and palliative care.

  • clinical decisions
  • ethics
  • end of life care
  • paediatrics
  • psychological care

Data availability statement

All data relevant to the study are included in the article or uploaded as online supplemental information.

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Data availability statement

All data relevant to the study are included in the article or uploaded as online supplemental information.

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  • Funding This work was supported by the National Institutes of Nursing Research (R21 NR012733-01A1).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.