Perspectives on periviability counselling and decision-making differed between neonatologists in the United States and the Netherlands (original) (raw)
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BMC pregnancy and childbirth, 2018
Since 2010, intensive care can be offered in the Netherlands at 24 weeks gestation (with parental consent) but the Dutch guideline lacks recommendations on organization, content and preferred decision-making of the counselling. Our aim is to explore preferred prenatal counselling at the limits of viability by Dutch perinatal professionals and compare this to current care. Online nationwide survey as part of the PreCo study (2013) amongst obstetricians and neonatologists in all Dutch level III perinatal care centers (n = 205).The survey regarded prenatal counselling at the limits of viability and focused on the domains of organization, content and decision-making in both current and preferred practice. One hundred twenty-two surveys were returned out of 205 eligible professionals (response rate 60%). Organization-wise: more than 80% of all professionals preferred (but currently missed) having protocols for several aspects of counselling, joint counselling by both neonatologist and ob...
BMC pediatrics, 2018
In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between...
Antenatal Counseling Regarding Resuscitation and Intensive Care Before 25 Weeks of Gestation
Pediatrics, 2015
The anticipated birth of an extremely low gestational age (<25 weeks) infant presents many difficult questions, and variations in practice continue to exist. Decisions regarding care of periviable infants should ideally be well informed, ethically sound, consistent within medical teams, and consonant with the parents' wishes. Each health care institution should consider having policies and procedures for antenatal counseling in these situations. Family counseling may be aided by the use of visual materials, which should take into consideration the intellectual, cultural, and other characteristics of the family members. Although general recommendations can guide practice, each situation is unique; thus, decision-making should be individualized. In most cases, the approach should be shared decision-making with the family, guided by considering both the likelihood of death or morbidity and the parents' desires for their unborn child. If a decision is made not to resuscitate,...
PEDIATRICS, 2006
OBJECTIVES. The objective of this study was to determine the attitudes of a variety of health care providers toward the recommendations that should be made to parents regarding the resuscitation of infants who are born at the margins of viability. METHODS. A written questionnaire was distributed to the medical and nursing staff at 4 tertiary perinatal centers. For each of 5 weekly gestational age intervals from 22 weeks to 26 weeks, 6 days, the health care providers were asked to describe on a scale from 1 to 5 whether they would strongly discourage through strongly encourage resuscitation. They also were queried regarding their comfort with counseling regarding these issues. The attitudes of various groups of providers were compared across weekly intervals. RESULTS. A total of 204 physicians and 539 nurses completed the survey. The majority would strongly discourage, either discourage or strongly discourage, be neutral or recommend, recommend or strongly recommend, and strongly rec...
Ensuring Accurate Knowledge of Prematurity Outcomes for Prenatal Counseling: In Reply
PEDIATRICS, 2005
Objectives. To determine the accuracy of knowledge of different health care providers regarding survival and long-term morbidity rates for very premature infants and to examine whether a focused educational intervention improves the accuracy of this knowledge and influences health care decisions. Methods. Using hypothetical case scenarios with infants at <28 weeks of gestation, we surveyed a variety of caregivers involved in perinatal communication and decision-making processes at a tertiary center that provides intensive care for neonates. We asked physicians from the pediatrics and obstetrics services and nurses and nurse practitioners from the NICU and obstetrics ward for their best estimates of survival and major long-term disability rates and for their opinions regarding the appropriateness of resuscitation and life support at each week of gestation of <29 weeks. After the survey, we educated all providers about current data on survival and long-term disability rates for preterm infants and gave them pocket-sized cards summarizing this information for reference during prenatal counseling. One month after the educational intervention and complete dissemination of the cards, a questionnaire with questions identical to those in the first survey was mailed to the same individuals. Results. Fifty-one health care providers were involved in the baseline survey. The response rates for the postintervention survey were 100% for physicians (20 of 20 subjects) and nurses (20 of 20 subjects) and 91% (10 of 11 subjects) for the nurse practitioners. In the baseline survey, statistically significant underestimates of survival rates were seen for physicians and nurses at 23 to 28 weeks of gestation and for nurse practitioners at 23 to 27 weeks of gestation. Statistically significant overestimates of disability rates were seen for physicians and nurse practitioners at <26 weeks of gestation and for nurses at <28 weeks of gestation. After the intervention, respondents demonstrated significant improvements in the accuracy of survival and disability estimates at many, but not all, gestational ages. Although underestimation of survival rates and overestimation of disability rates decreased after the intervention, it persisted to some degree. After the intervention, a larger proportion of physicians (53% vs 21%) and a smaller proportion of nurses (10% vs 37%) were likely to recommend resuscitation for infants born at 23 weeks of gestation. Conclusions. Physicians, nurses, and nurse practitioners underestimated survival rates and overestimated long-term disability rates for very premature infants. After education, their estimates of survival and long-term disability rates for these infants improved significantly. More accurate estimates of survival and disability rates affected physicians' and nurses' theoretical decisionmaking regarding the appropriateness of resuscitation at 23 weeks of gestation.
Comparing neonatal morbidity and mortality estimates across specialty in periviable counseling
The journal of maternal-fetal & neonatal medicine : the official journal of the European Association of Perinatal Medicine, the Federation of Asia and Oceania Perinatal Societies, the International Society of Perinatal Obstetricians, 2014
Objective: To describe and compare estimates of neonatal morbidity and mortality communicated by neonatologists and obstetricians in simulated periviable counseling encounters. Methods: A simulation-based study of 16 obstetricians (OBs) and 15 neonatologists counseling standardized patients portraying pregnant women with ruptured membranes at 23 weeks gestation. Two investigators tabulated all instances of numerically-described risk estimates across individuals and by specialty. Results: Overall, 12/15 (80%) neonatologists utilized numeric estimates of survival; 6/16 (38%) OBs did. OBs frequently deferred the discussion of "exact numbers" to neonatologists. The 12 neonatologists provided 13 unique numeric estimates, ranging from 3% to 50% survival. Half of those neonatologists provided two to three different estimates in a single encounter. By comparison, six OBs provided four unique survival estimates ("50%", "30-40%", "1/3-1/2", "<10...
Various experiences and preferences of Dutch parents in prenatal counseling in extreme prematurity
Patient Education and Counseling, 2018
To investigate experienced and preferred prenatal counseling among parents of extremely premature babies. Methods: A Dutch nationwide, multicenter, cross-sectional study using an online survey. Surveys were sent to all parents of extremely premature babies born between 2010 and 2013 at 24 +0/7-24 +6/7 weeks of gestation. Results: Sixty-one out of 229 surveys were returned. A minority (14%) had no counseling conversation. Conversations were done more often by neonatologists (90%) than by obstetricians (39%) and in 37% by both these experts. Supportive material was rarely used (19%). Mortality (92%) and short-term morbidity (88%) were discussed the most, and more frequently than long-term morbidity (65%), practical items (63%) and delivery mode (52%). Most decisions on active care or palliative comfort care were perceived as decisions by doctor and parents together (61%). 80% felt they were involved in decision-making. The preferred way of involvement in decision-making varied among parents. Conclusion: The vast majority of parents were counseled: mostly by neonatologists, and mainly about mortality and short-term morbidity. Parents wanted to be involved in the decision-making process but differed on the preferred extent of involvement. Practice implications Understanding of shared decision-making may contribute to meet the various preferences of parents.
Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity
Pediatrics, 2019
OBJECTIVES: To develop a nationwide, evidence-based framework to support prenatal counseling in extreme prematurity, focusing on organization, decision-making, content, and style aspects. METHODS: A nationwide multicenter RAND–modified Delphi method study was performed between November 2016 and December 2017 in the Netherlands. Firstly, recommendations were extracted from literature and previous studies. Secondly, an expert panel (n = 21) with experienced parents, obstetricians, and neonatologists rated the recommendations on importance for inclusion in the framework. Thirdly, ratings were discussed in a consensus meeting. The final set of recommendations was approved and transformed into a framework. RESULTS: A total of 101 recommendations on organization, decision-making, content, and style were included in the framework, including tools to support personalization. The most important recommendations regarding organization were to have both parents involved in the counseling with b...
Provider Perspectives Regarding Resuscitation Decisions for Neonates and Other Vulnerable Patients
The Journal of Pediatrics, 2017
Objectives To use structured surveys to assess the perspectives of pediatric residents and neonatal nurses on resuscitation decisions for vulnerable patients, including neonates. Study design Pediatric providers were surveyed using scenarios for 6 critically ill patients of different ages with outcomes explicitly described. Providers were asked (1) whether resuscitation was in each patient's best interest; (2) whether they would accept families' wishes for comfort care (no resuscitation); and (3) to rank patients in order of priority for resuscitation. In a structured interview, each participant explained how they evaluated patient interests and when applicable, why their answers differed for neonates. Interviews were audiotaped; transcripts were analyzed using thematic analysis and mixed methods. Results Eighty pediatric residents and neonatal nurses participated (response rate 74%). When making life and death decisions, participants considered (1) patient characteristics (96%), (2) personal experience/biases (85%), (3) family's wishes and desires (81%), (4) disease characteristics (74%), and (5) societal perspectives (36%). These factors were not in favor of sick neonates: of the participants, 85% reported having negative biases toward neonates and 60% did not read, misinterpreted, and/or distrusted neonatal outcome statistics. Additional factors used to justify comfort care for neonates included limited personhood and lack of relationships/attachment (73%); prioritization of family's best interest, and social acceptability of death (36%). When these preconceptions were discussed, 70% of respondents reported they would change their answers in favor of neonates. Conclusions Resuscitation decisions for neonates are based on many factors, such as considerations of personhood and family's interests (that are not traditional indicators of benefit), which may explain why decision making is different for the neonatal population. (J Pediatr 2017;■■:■■-■■). See editorial, p ••• T he majority of pediatric deaths occur in intensive care units, 1,2 most often after a decision to limit life-support. 3-7 These decisions, made by parents and providers, are among the hardest decisions in pediatrics. Evaluating the interest of children is complex. 8,9 Some authors invoke their best interests, 10 others "good enough" or "not unreasonable" interests, 11 and for others, avoiding harm is the main goal. 12 When an intervention is in the interest of a child and nonintervention places a child at significant harm, the intervention is generally considered as being legally and ethically preferable. Empirical investigations have demonstrated that neonates are treated differently when life and death decisions are made. 13-25 In questionnaire studies, scenarios of critically ill incompetent patients of different ages were presented with outcomes explicitly described. Although many respondents evaluated that resuscitation was in the interest of neonates, a larger proportion estimated that resuscitation was in the interest of older patients with similar or worse outcomes. 14-22 For older patients, a family's request for comfort care was rarely accepted when respondents evaluated resuscitation to be in a patient's interest. On the other hand, comfort care was generally accepted for neonates, despite estimating that resuscitation was in their interest. 14-22 This differential treatment seems to transcend culture and has been demonstrated in 7 culturally different countries, 18 in a large nonmedical population, 14 among pediatricians who do not work in neonatology 16 and among physicians who do not work in pediatrics. 20 In none of these studies were participants asked to explain their answers. The goal of this study was to investigate how providers evaluate the interests of vulnerable patients and why their decision making differs for neonates. Methods A mixed methods sequential explanatory design was used. First, participants answered a questionnaire that has been validated, widely used, and systematically NICU Neonatal intensive care unit