Ethical Frameworks in Periviable Decision-Making: Patient Perspectives and Provider Patterns

Abstract

Background: Periviability counseling involves engaging in difficult ethical decisions. The ethical frameworks used by patients and their healthcare providers to discuss this topic have not been previously studied. Objectives: This study assessed the ethical frameworks used by patients and by providers during periviability counseling and subsequent decision making. Study Design: This mixed methods study included patients between gestation ages 21 weeks 0 days through 24 weeks 6 days who required periviability counseling, and the providers performing this counseling. Counseling sessions between providers and patients were recorded, as were semi-structured follow-up interviews with patients. These recordings were transcribed and analyzed using thematic analysis. Demographic surveys were given to providers, and patient demographic, obstetric, and delivery information was abstracted from medical records. Results: A total of 11 patients and 11 providers participated in either a recorded counseling session, a follow-up interview, or both. Qualitative analysis revealed the following themes: 1) decisions regarding periviable intervention are the patient’s to make, 2) desire to avoid pain or suffering of the fetus/newborn, especially as it related to CPR, 3) doing what is best for the family, including partners and other children at home, 4) “doing everything” as a good in itself, and 5) periviable complications disrupt expectations about parenthood or pregnancy which then need to be reimagined. These themes corresponded to four distinct ethical frameworks: principlism, care ethics, virtue ethics, and narrative ethics. All of the patients, and approximately three-quarters of providers used at least one of these ethical frameworks; most used a combination of frameworks. Conclusions: Patients and providers engaging in decision making surrounding periviable intervention use commonly accepted ethical frameworks to discuss and decide how to proceed with these pregnancies.