Neonatologists’ decision-making for resuscitation and non-resuscitation of extremely preterm infants: ethical principles, challenges, and strategies—a qualitative study (original) (raw)
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Journal of obstetrics and gynaecology Canada : JOGC = Journal d'obstétrique et gynécologie du Canada : JOGC, 2011
Across Canada, the rate of preterm birth (i.e., at < 37 weeks' gestation) has been steadily increasing. Advances in perinatal medicine and neonatal intensive care have resulted in an increased capacity to intervene at the extremes of prematurity, leading to an increase in the overall survival of infants born at early gestations. There has been little corresponding decrease in long-term complications. As a result, additional stresses are placed on neonatal intensive care units across the country, impacting families, health care professionals, and society as a whole. Moral distress and moral residue are often cited in the neonatal-perinatal literature as stressors experienced by those who participate in the resuscitation decision-making process. They are directly related to the challenge of making a concrete decision about life and death at extremely early gestations in the context of long-term uncertainty. In this review, we performed a systematic search of medical and ethics ...
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...
The Extremely Preterm Infant: Ethical Considerations in Life-and-Death Decision-Making
Frontiers in Pediatrics, 2020
Care of the preterm infant has improved tremendously over the last 60 years, with attendant improvement in outcomes. For the extremely preterm infant, <28 weeks' gestation, concerns related to survival as well as neurodevelopmental impairment, have influenced decision-making to a much larger extent than seen in older children. Possible reasons for conferring a different status on extremely preterm infants include: (1) the belief that the brain is a privileged organ, (2) the degree of medical uncertainty in terms of outcomes, (3) the fact that the family will deal with the psychological, emotional, physical, and financial consequences of treatment decisions, (4) that the extremely preterm looks more like a fetus than a term newborn, (5) the initial lack of relational identity, (6) the fact that extremely preterm infants are technology-dependent, and (7) the timing of decision-making around delivery. Treating extremely preterm infants differently does not hold up to scrutiny. They are owed the same respect as other pediatric patients, in terms of personhood, and we have the same duties to care for them. However, the degree of medical uncertainty and the fact that parents will deal with the consequences of decision-making, highlights the importance of providing a wide band of discretion in parental decision-making authority. Ethical principles considered in decision-making include best interest (historically the sine qua non of pediatric decision-making), a reasonable person standard, the "good enough" parent, and the harm principle, the latter two being more pragmatic. To operationalize these principles, potential models for decision-making are the Zone of Parental Discretion, the Not Unreasonable Standard, and a Shared Decision-Making model. In the final analysis shared decision-making with a wide zone of parental discretion, which is based on the harm principle, would provide fair and equitable decision-making for the extremely preterm infant. However, in the rare circumstance where parents do not wish to embark upon intensive care, against medical recommendations, it would be most helpful to develop local guidelines both for support of health care practitioners and to provide consistency of care for extremely preterm infants.
Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)
Archivos Argentinos De Pediatria, 2022
Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects of neonatal bioethics applied to end-of-life situations in newborn infants. Part I describes notions of therapeutic futility, redirection of care criteria, patient and family rights, and concepts about the value of life. Part II analyzes situations that deserve considering the redirection of care and delves into aspects of communication and the complex process of end-of-life decision-making in newborn infants.
Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part I)
Archivos Argentinos De Pediatria, 2022
Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects of neonatal bioethics applied to end-of-life situations in newborn infants. Part I describes notions of therapeutic futility, redirection of care criteria, patient and family rights, and concepts about the value of life. Part II analyzes situations that deserve considering the redirection of care and delves into aspects of communication and the complex process of end-of-life decision-making in newborn infants.
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
Ethical issues in neonatal intensive care and physicians’ practices: A European perspective
Acta Paediatrica, 2007
An international project (EURONIC) was carried out to explore the end-of-life decision-making process in a large, representative sample of neonatal intensive care units (NICUs) in eight western European countries: France, Germany, Great Britain, Italy, Luxembourg, the Netherlands, Spain and Sweden. Structured questionnaires were used to record data on NICU organization and policies, and to survey staff views and practices regarding ethical decision-making. One hundred and twenty-two NICUs were recruited by census or random sampling (response rate 86%); 1235 physicians and 3115 nurses completed the staff questionnaire (response rates 89 and 85%, respectively). This paper focuses on the physicians' answers. In all countries but Italy, most physicians reported having been involved at least once in setting limits to intensive care because of a baby's incurable condition and/or poor neurological prognosis. Adopted strategies varied between countries. Practices such as the continuation of current treatment without intensifying it and the withholding of emergency manoeuvres appeared widespread. In contrast, the frequency of doctors reporting withdrawal of mechanical ventilation was highest in the Netherlands (93%), Sweden (91%) and the Great Britain (88%), intermediate in France and Germany, and lowest in Spain and Italy (34 and 21%, respectively). Conclusion: Ethically problematic clinical cases are approached differently in the various countries. The findings of this study may provide an opportunity for physicians to review their practices critically, in light of how other colleagues proceed, and foster an open discussion about these difficult issues.