Guidelines for the formation and operation of a perinatal ethics council

There has been generally increased awareness of bioethical issues as a result of trends related to specific medical technologies (e.g., reproduction-enhancing interventions), government regulation of medical services (e.g., Mann, 2004), and inequality in delivery of health care related to income, race, and other variables (American Society for Bioethics and Humanities, 2009). Nonetheless, perinatal ethics issues (i.e., those related to the period 28 weeks postconception to 4 weeks after the birth) have received limited attention, and medical organizations of multiple types struggle to deal with challenges related to fetuses with lethal diagnoses, extremely low-birth-weight infants, and similar issues. In this domain, too, traditionally disadvantaged groups receive fewer resources than others (Sword & Watt, 2005), making the need for better approaches to perinatal ethics paramount. Moreover, the moral distress practitioners experience when dealing with perinatal issues has been linked to practitioner burnout, along with increased turnover and hospital costs (e.g., Wlody, 2007; Corley, 2002). Thus enhanced management of perinatal ethics has implications for patients and their families, practitioners, the medical organization in which they work, and the broader community. This study presents empirical evidence for best practices related to organizing, running, and improving a perinatal ethics council (PEC) within a broader health care organization. I used survey, interview, and focus group data to gain feedback on the need for and operation of a PEC. The focus group considered information related to the real-life operation of Mercy Hospital's first PEC, a group I launched in 2009 to benefit that facility's patients, patients' families, nurses, physicians, residents, social workers, and other staff. To develop PEC-related guidelines, I collected feedback related to a PEC's mission and objectives, membership, logistics (e.g., meeting frequency), operation, and meta-ethics (i.e., the ethical issues related to serving on a PEC) issues. This dissertation presents the growing inspiration my career experience provided for this research; a statement of the problem I sought to solve; a review of the literature related to ethics, bioethics, and perinatal issues; detailed methodology for the study; presentation and analysis of the findings. Overall, the results highlight the high value that a PEC can bring to patients, practitioners, the broader organization, and society at large, along with providing multiple specific guidelines for PEC formation and operation. The dissertation concludes with a brief discussion of the limitations (e.g., sample characteristics) and potential extensions of my research.;Key words: Perinatal, ethics, bioethics, hospital administration...