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Parents’ decision-making following diagnosis of a severe congenital anomaly in pregnancy: Practical, theoretical and ethical tensions

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  • Paton, Alexis
  • Armstrong, Natalie
  • Smith, Lucy
  • Lotto, Robyn

Abstract

Patient involvement, in the form of shared decision-making, is advocated within healthcare. This is informed by the principlist account of patient autonomy that prioritises informed understanding, and decision-making free from coercion. This arguably over-simplifies the role of the social, whilst overlooking the role of culture and context in medical decision-making. Clinicians encourage patients to demonstrably make decisions in the principlist ‘style’ that fit with their understandings of ethically ‘correct’ ways to support patient decision-making. However, this expected ‘style’ is often not achieved in practice. In this article, we use empirical data from a qualitative study exploring parental decision-making following diagnosis or suspicion of a severe congenital anomaly in pregnancy. Our study was based in four fetal medicine clinics in England, comprising semi-structured interviews with 38 parents whose pregnancy was affected by a severe congenital anomaly, 18 interviews with fetal medicine clinicians, and audio-recordings of 48 consultations. Examination of the dynamics at play within different approaches to decision-making highlights how the idealised concepts proposed in theory fail to capture real-life experiences of medical decision-making. The influence of the patient-clinician relationship on decisions is brought to the fore, highlighting the influence of power dynamics in implicitly and explicitly influencing patient decisions, and the need to better address this in policy and practice.

Suggested Citation

  • Paton, Alexis & Armstrong, Natalie & Smith, Lucy & Lotto, Robyn, 2020. "Parents’ decision-making following diagnosis of a severe congenital anomaly in pregnancy: Practical, theoretical and ethical tensions," Social Science & Medicine, Elsevier, vol. 266(C).
    • Handle: RePEc:eee:socmed:v:266:y:2020:i:c:s0277953620305815
    DOI: 10.1016/j.socscimed.2020.113362
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    References listed on IDEAS

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    1. Charles, Cathy & Gafni, Amiram & Whelan, Tim, 1997. "Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)," Social Science & Medicine, Elsevier, vol. 44(5), pages 681-692, March.
    2. Peter Taylor‐Gooby & Jens O. Zinn, 2006. "Current Directions in Risk Research: New Developments in Psychology and Sociology," Risk Analysis, John Wiley & Sons, vol. 26(2), pages 397-411, April.
    3. Charles, Cathy & Gafni, Amiram & Whelan, Tim, 1999. "Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model," Social Science & Medicine, Elsevier, vol. 49(5), pages 651-661, September.
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    1. Lilly, Anna-Grace & Newman, Isabelle P. & Bjork-James, Sophie, 2024. "Our hands are tied: abortion bans and hesitant medicine," Social Science & Medicine, Elsevier, vol. 350(C).

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