Ethical Challenges of Saving Extremely Premature Infants Using a Grounded Theory: Iranian Neonatologists’ Perception

Abstract

Background: Extremely premature infants are at greater risks of cognitive, behavioral, growth, and developmental problems, compared to the term infants. In addition to physical problems, these infants also incur a lot of emotional costs, stress, and financial burden to the family. This study aimed to explore ethical challenges and factors affecting decisions about initiation, sustain, and termination of the life of extremely premature infants that neonatologists face every day in the clinics. Methods: The present qualitative study was conducted based on a grounded theory. The participants were 21 practitioners who were interviewed after giving consent and being briefed about the study. All interviews were recorded, transcribed, and then analyzed in this study. The data were then analyzed using Strauss-Corbin (1998) method in three phases of open, axial, and selective coding. Results: During analysis, 1420 initial (open) codes, 19 subcategories, and two specific categories were obtained to explain the ethical challenges of decision-making on the sustaining or terminating the life of extremely premature infants. These categories included 1) Independent decision-making of physicians, followed by two subcategories of "professional decision-making based on knowledge and clinical experience" and "uncertainty about the consequences of consulting with parents", and 2) Improper conditions and facilities, followed by three subcategories of "lack of local scientific resources on medical ethics", "inefficient neonatal intensive care units", and "lack of efficient rules and guidelines". According to the obtained results, factors leading to ethical challenges included the lack of ethical and legal guidelines tailored to clinical conditions, lack of local scientific documentation in accordance with clinical conditions and health facilities available in the Neonatal Intensive Care Unit (NICU), conflicts between the current law on life preservation and moral guidelines, and lack of facilities, manpower, and equipment in the NICU. Conclusion: A physician’s decision is based on personal scientific and clinical experiences according to the conditions of the wards.