Shared decision‐making, value pluralism and the zone of parental discretion

‘Good ethics start with good facts’ wrote John Lantos and William Meadow in a 2009 editorial addressing periviability controversies – debates that continue to generate lively discussion amongst neonatologists, obstetricians, ethicists and families (1). How do we best promote shared decisionmaking with pregnant women who, through no fault of their own, might deliver an extremely premature infant? Unfortunately, the recent ‘A Different View’ in this journal by Dr. Patrick Marmion regarding periviability issues in general, and specifically our shared decision-making model at Providence St. Vincent Medical Center (PSVMC) in Portland, OR, is decidedly short on facts and is regrettably inflammatory (2). We appreciate the opportunity to respectfully clarify our bioethical foundation and periviability dialogue framework with the hope of promoting reasoned dialogue and understanding. The formation of the PSVMC periviability guidelines was a rigorous and multidisciplinary process detailed in three progressive publications, starting with the first explicit, consensus periviability guideline to appear in a peer-reviewed journal (3). Our recent 18-year summary is the largest exposition to date that details the results of a shared decision-making experience at the margins of neonatal survival and good health, an example of value pluralism which makes no claim of ethical superiority, but rather a collaborative attempt at transparency andprocess improvement (4).Our guidelineswere cited by the recent American Academy of Pediatrics Committee on Fetus and Newborn Clinical Report as an exemplary shared decision-making process (5). 1. Every PSVMC neonatologist, maternal foetal medicine specialist, obstetrician, clinical ethicist, midwife, neonatal nurse practitioner, obstetric and neonatal intensive care unit nurse was invited to participate in our guideline formation. Dr. Marmion has misled Acta Paediatrica readers, and he has never worked at PSVMC and is not on staff. 2. PSVMC periviability guidelines do not mandate palliative comfort care at 23 weeks – our group consensus guidelines offer palliative care only at 22 weeks, NICU care at 26 weeks and a shared decision-making process with flexible recommendations at 23, 24 and 25 weeks, see tables 1 and 2 (4). This is entirely consistent with the 2015 clinical recommendations from the American Academy of Pediatrics (5), as well as 2016 guidelines from the American College of Obstetricians and Gynecologists, the 2014 National Institutes of Child Health and Human Development Executive Summary, and the just-published 2017 Canadian Paediatric Society framework from Lemyre and Moore. In addition, our guidelines are wholly within the practice spectrum detailed by Binepal in the 2015 international systematic review of periviability counselling. 3. PSVMC guidelines are not just based upon gestational age; we consistently factor various maternal, foetal and social variables into the multivariable equation that is the nature of true shared decision-making (see Tables 1 and 2, and Methods and Results in reference 4). 4. Our guidelines are not inflexible mandates because any obstetrician, neonatologist or clinical ethicist after considering the entire circumstance with colleagues may give her own considered opinion to a family either in agreementordisagreementwithour groupconsensus guidelines. This transparency and flexibility ensures the integrity of the decision-making process. There is no ‘select group’ as Dr. Marmion incorrectly implies. Articles in the series A Different View are edited by William Meadow ([email protected]). We encourage you to offer your own different view either in response to A Different View you do not fully agree with, or on an unrelated topic. Send your article to Dr. Meadow ([email protected]).