In a commentary in the New England Journal of Medicine (NEJM) on a ruling of the Texas Supreme Court in Miller v. HCA, George Annas, the NEJM legal analyst, observed, “One bioethical issue is as intractable today as 30 years ago when the topic was first publicly discussed: the extent of parental authority to refuse life-sustaining medical treatment for an extremely premature infant”. The case involved the resuscitation of a 23-week 615 g infant over parental objections. It took years to resolve the case in the legal system. Nearly two decades later, we might inquire whether neonatologists and other critical care practitioners have greater comfort in dealing with the issue of parental objection?
L’objectif de l’étude était de comprendre les arguments utilisés pour prendre une décision de fin de vie en réanimation néonatale. L’étude était une étude qualitative par entretiens individuels semi dirigés avec analyse thématique. Les composantes entrant dans les discussions sont nombreuses. On note parfois une confusion dans l’intentionnalité. Les décisions prises lors des fins de vie en réanimation semblent souvent difficiles surtout dans les tableaux cliniques en demi-teinte.
OBJECTIVE: To assess changes in attitudes of neonatologists regarding the care of extremely preterm infants and parental involvement over the last 20 years.
STUDY DESIGN: Internet-based survey (2016) involving 170 tertiary neonatal intensive care units in Austria, Switzerland, and Germany using the European Project on Parents' Information and Ethical Decision Making in Neonatal Intensive Care Units questionnaire (German edition) with minor modifications to the original survey from 1996 to 1997.
RESULTS: The 2016 survey included 104 respondents (52.5% response rate). In 2016, significantly more neonatologists reported having ever withheld intensive care treatment (99% vs 69%) and withdrawn mechanical ventilation (96% vs 61%) or life-saving drugs (99% vs 79%), compared with neonatologists surveyed in 1996-1997. Fewer considered limiting intensive care as a slippery slope possibly leading to abuse (18% vs 48%). In the situation of a deteriorating clinical condition despite all treatment, significantly more neonatologists would ask parental opinion about continuation of intensive care (49% vs 18%). In 2016, 21% of German neonatologists would resuscitate a hypothetical infant at the limits of viability, even against parental wishes.
CONCLUSIONS: Withholding or withdrawing intensive care for extremely preterm infants at the limits of viability with parental involvement has become more acceptable than it was 20 years ago. However, resuscitating extremely preterm infants against parental wishes remains an option for up to one-fifth of the responding neonatologists in this survey.
Ces dernières années, les soins palliatifs en maternité se sont beaucoup développés. Cela est dû à l’évolution du cadre législatif, de la médecine et des demandes de nombreux parents, face à un diagnostic létal durant la grossesse, de poursuivre celle-ci et d’accompagner leur enfant à la naissance. En parallèle, la prise en charge, en réanimation néonatale, de l’extrême prématurité, s’est grandement améliorée. Différentes situations peuvent être concernées par la mise en place de soins palliatifs en maternité. Cet accompagnement spécifique comprend des enjeux importants.
BACKGROUND: It is widely acceptable to involve parents in decision-making about the resuscitation of extremely preterm infants (EPIs) in the gray zone. However, there are different views about where the boundaries of the gray zone should lie. Our aim in this study was to compare the resuscitation thresholds for EPIs between neonatologists in the United Kingdom, Sweden, and the Netherlands.
METHODS: We distributed an online survey to consultant neonatologists and neonatal registrars and fellows that included clinical scenarios in which parents requested resuscitation or nonresuscitation. Respondents were asked about the lowest gestational age and/or the worst prognosis at which they would provide resuscitation and the highest gestational age and/or the best prognosis at which they would withhold resuscitation. In additional scenarios, influence of the condition at birth or consideration of available health care resources was assessed.
RESULTS: The survey was completed by 162 neonatologists (30% response rate). There was a significant difference between countries; the gray zone for most UK respondents was 23 + 0/7 to 23 + 6/7 or 24 weeks' gestation, compared with 22 + 0/7 to 22 + 6/7 or 23 weeks' gestation in Sweden and 24 + 0/7 to 25 + 6/7 or 26 weeks' gestation in the Netherlands. Resuscitation thresholds were higher if an infant was born in poor condition. There was wide variation in the prognosis that warranted resuscitation or nonresuscitation. Consideration of resource scarcity did not alter responses.
CONCLUSIONS: In this survey, we found significant differences in approach to the resuscitation of EPIs, with a spectrum from most proactive (Sweden) to least proactive (Netherlands). Most survey respondents indicated shifts in decision-making that were associated with particular weeks' gestation. Despite the different approaches to decision-making in the 3 countries, there was relatively little difference between countries in neonatologists' prognostic thresholds for resuscitation.
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are identified and discussed.
OBJECTIVE: 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.
BACKGROUND AND OBJECTIVES: The decision to attempt resuscitation or provide palliative care at birth for extremely preterm infants between 22-25 weeks remains complex. The purpose of this study was to identify facilitators and barriers to implementation of a clinical practice guideline developed to support shared decision-making for these cases.
METHODS: A purposeful sample of healthcare providers, involved in the care of one of five cases of anticipated extremely preterm birth, was recruited for interviews. Participants shared their views on the guideline content, implementation process, and facilitators and barriers encountered. Interviews were audio-recorded and transcribed verbatim. Qualitative content analysis was used to code, categorize, and thematically describe the data. The Knowledge-Attitudes-Behaviours framework was used to organize the findings.
RESULTS: Twenty-five key informants (16 physicians, nine nurses) were interviewed. Participants described varying levels of knowledge of the guideline. Facilitators to implementation included: (1) an awareness of, familiarity with and belief in the content; (2) hard copy and electronic guideline accessibility; and, (3) institutional expertise to provide necessary care. Barriers included: (1) minimal awareness or familiarity with the content; (2) lack of agreement with the recommendations; (3) inadequate evidence and applicability to support changes in practice; and, (4) lack of resources to care for the most immature infants.
CONCLUSIONS: Identified facilitators and barriers will inform the development of tailored strategies for improved local and future broader implementation. Other institutions can use the results to facilitate implementation of their guidelines on this ethically charged area.
Lors de l’hospitalisation inattendue de leur enfant en soins intensifs néonatals, les parents vivent plusieurs émotions intenses et éprouvent un sentiment profond d’incertitude, voire d’angoisse. Les résultats préliminaires d’une revue de littérature permettent de documenter les besoins des parents de nouveau-nés prématurés en fin de vie admis en soins intensifs. Le soutien offert par les professionnels est essentiel. Les besoins d’information et d’écoute constituent des éléments fondamentaux à cette expérience.
BACKGROUND: 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.
METHODS: 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 neonatologists and NICU nurses and between language regions were explored.
RESULTS: Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given.
CONCLUSIONS: Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.
There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many different factors. Nevertheless, many policies and practices throughout Europe and North America still appear to base decisions on gestational age alone or on gestational age as the primary factor that determines whether doctors recommend or even offer life-sustaining neonatal intensive care treatment. These policies are well intentioned. They aim to guide doctors and parents to make decisions that are best for the baby. That is an ethically appropriate goal. But in relying so heavily on gestational age, such policies may actually do the babies a disservice by denying some babies treatment that might be beneficial and lead to intact survival. In this paper, we argue that such policies are unjust to premature babies and ought to be abolished. In their place, we propose individualized treatment decisions for premature babies. This would treat premature babies as we treat all other patients, with clinical decisions based on an individualized estimation of likelihood that treatment would be beneficial.
OBJECTIVE: To examine prospective parents' perceptions of management options and outcomes in the context of threatened periviable delivery, and the values they apply in making antenatal decisions during this period.
STUDY DESIGN: Qualitative analysis of 46 antenatal interviews conducted at three tertiary-care hospitals with 54 prospective parents (40 pregnant women, 14 partners) who had received counseling for threatened periviable delivery (40 cases).
RESULTS: Participants most often recalled being involved in resuscitation, cerclage, and delivery mode decisions. Over half (63.0%) desired a shared decision-making role. Most (85.2%) recalled hearing about morbidity and mortality, with many reiterating terms like "brain damage", "disability", and "handicap". The potential for disability influenced decision making to variable degrees. In describing what mattered most, participant spoke of giving their child a "fighting chance"; others voiced concerns about "best interest", a "healthy baby", "pain and suffering", and religious faith.
CONCLUSIONS: Our findings underscore the importance of presenting clear information on disability and eliciting the factors that parents deem most important in making decisions about periviable birth.
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.
This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical distance to the child, medical uncertainties, and upcoming decisions. Even though they are considered to be parents (assigned parenthood), they cannot act as primary caregivers. Instead, they depend on professional instructions for access and care. Embodied parenthood can be experienced only at the end-of-life, that is, during the dying trajectory and after the child's death. Professionally supporting parents during this compressed process (from assigned and distant to embodied parenthood) contributes fundamentally to their perception of being a family and supports their mourning. This calls for the further establishment of palliative and bereavement care concepts in neonatology.
OBJECTIVE: To explore parental attitudes and values in the end-of-life decision-making process of extremely preterm infants (gestational age < 28 weeks).
DESIGN: Hermeneutically oriented qualitative research design with in-depth interviews.
SETTING: Level III NICU in Switzerland.
PARTICIPANTS: Purposive sample of seven couples, five mothers, and one father (20 parents).
METHODS: Qualitative content analysis was used to categorize and interpret themes from parents' narratives.
RESULTS: Parents described factors that affected the decision-making process in satisfactory or unsatisfactory ways. Transparent information, empathy, and honesty enhanced communication between parents and the health care team. Lack of transparent information and continuous support decreased satisfaction. The level of involvement in decisions differed by setting. Most parents made decisions regarding lung maturation and/or initiation of care in the delivery room. Parent participation in the NICU was experienced differently. Contrary to the hospital's ethical model, few parents recalled being involved in the decision-making process. Some parents experienced a dissociative state of mind that hindered their involvement, whereas others felt actively involved.
CONCLUSIONS: Our results suggest the need for careful and continuous professional evaluation of parents' wishes about involvement in the decision-making process, along with descriptions of medical facts and treatment options. A lack of attentive listening and dialogue may cause paternalistic decision trajectories.
Emphasis has been placed on engaging parents in processes of shared decision making for delivery room management decisions of critically ill neonates whose outcomes are uncertain and unpredictable. The goal of antenatal consultation should rather be to adapt to parental needs and empower them through a personalized decision-making process. This can be done by acknowledging individuality and diversity while respecting the best interests of neonates. The goal is for parents to feel like they have agency and ability and are good parents, before birth, at birth, and after, either in the NICU or until the death of their child.
D'où provient la multiplication des discours sur la vulnérabilité humaine et que faut-il en penser ? Issu d'une recherche multidisciplinaire, cet ouvrage propose les clefs pour comprendre l'origine de cette notion et les principaux modèles qui l'utilisent. Analyse sociologique des nouvelles formes de fragilités sociales, formation d'un droit des personnes vulnérables, regard anthropologique et politique sur l'usage de ces catégories sont autant d'éléments essentiels pour la compréhension de notre époque dans ses mutations profondes. Le parti pris est ici de ne pas se satisfaire d'une recension de ces multiples voix de la vulnérabilité mais d'explorer la vulnérabilité sous trois perspectives rigoureuses et complémentaires : présenter les fondements philosophiques de la notion par des synthèses (théorie des capabilités, éthique de Lévinas, Habermas ou Jonas) et un questionnement problématique fondamental ; évaluer l'apport de cette notion à l'éthique du soin et plus généralement à la pensée éthique ; écouter ce que peuvent dire de cette notion aussi bien les pratiques médicales, la clinique psychologique ou encore d'autres formes d'accompagnement de la personne en situation de fragilité.
Origine : BDSP. Notice produite par EHESP DFr9R0xJ. Diffusion soumise à autorisation
Partant de son expérience personnelle d’une dizaine d’années, en qualité d’infirmière pédiatrique au sein du service de néonatalogie intensive des cliniques universitaires Saint-Luc à Bruxelles, l’auteure a conçu le projet de mettre sur pied un groupe de travail visant à réfléchir, voire à remettre en question les pratiques infirmières de prise en charge des situations de fin de vie des grands prématurés. Cette réflexion, basée sur l’expérience des intervenants, a permis de développer des outils mieux adaptés aux besoins et aux attentes de l’enfant en fin de vie et de ses proches. Grâce à l’implication de toute l’équipe soignante, cette réflexion a débouché sur la mise en place d’un projet thérapeutique qui est désormais appliqué de façon systématique.
Lors d'un possible arrêt de la réanimation d'un grand prématuré, deux autorités sont en présence : l'autorité médicale et l'autorité parentale. L'enjeu éthique est alors de parvenir à une décision partagée prise dans l'intérêt de l'enfant.
Tout parent d'enfant prématuré doit progressivement accomplir un processus de deuil et faire face à de multiples émotions, tout en investissant son enfant. La puéricultrice, par une prise en charge individualisée de l'enfant et de sa famille, et en s'appuyant sur les soins de développement, peut les aider à établir un lien d'attachement.