Barriers to and Facilitators of End-of-Life Decision Making by Neonatologists and Neonatal Nurses in Neonates: A Qualitative Study

Dombrecht, Laure; Piette, Veerle; Deliëns, Luc; Cools, Filip; Chambaere, Kenneth; Goossens, Lien; Naulaers, Gunnar; Cornette, Luc; Beernaert, Kim; Cohen, Joachim; Laroche, Sabrina; Theyskens, Claire; Vandeputte, Christine; Broek, Hilde Van de

doi:10.1016/j.jpainsymman.2019.10.007

Cited by 13 publications

(20 citation statements)

References 27 publications

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“…Nurses stated that they experienced less sadness for premature deaths; however, they felt sadder for mature babies. Dombrect et al. (2020) (Erdoğan et al, 2014) reported that the decision to end life support in term infants was much more difficult than in preterm infants.…”

Section: Discussionmentioning

confidence: 99%

“…Nurses stated that they experienced less sadness for premature deaths; however, they felt sadder for mature babies. Dombrect et al (2020) (Erdo� gan et al, 2014 reported that the decision to end life support in term infants was much more difficult than in preterm infants. The reason for this difference may be that the life chances of mature infants are much higher, that families do not expect the loss of their babies, that the life chance of premature infants is lower and the rate of anomaly is higher, and that the families of premature infants are prepared for the bad news.…”

Section: Discussionmentioning

confidence: 99%

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Emotional Responses of Neonatal Intensive Care Nurses to Neonatal Death

2020

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The study was planned as a descriptive qualitative study to determine the emotional responses of neonatal intensive care nurses to work in the neonatal unit and to neonatal deaths. The sample of the study consisted of 7 nurses who work at the neonatal intensive care unit since data saturation was achieved. The data were collected using the “Semi-Structured In-Depth Interview Guide for Nurses”. The data were analyzed using the content analysis method. Following codes were reached as a result of the study: ‘happiness-sadness’, ‘professional satisfaction-exhaustion’, ‘empathy’, ‘responsibility-guilt’, ‘hope-despair’ under the theme of being a nurse at neonatal unit’; ‘unforgettable first loss’, ‘professionalism in intervention-and then: sadness, ‘mature-premature difference’, ‘difficulty in giving hurtful news-inability to associate with death’ and ‘attachment-burnout’ under the theme of experiencing neonatal loss.It was seen that nurses’ emotions about working at neonatal intensive care unit were generally positive; however, these emotions changed to negative after neonate’s relapsing and death.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Emotional Responses of Neonatal Intensive Care Nurses to Neonatal Death

2020

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“…Other studies on the impact pf parents’ characteristics on decision-making for resuscitation of EPIs focused mainly on the impact of race, marital status, or financial resources and as such were not directly comparable with our results ( 38 – 40 ). However, another Belgian study on nurses’ and neonatologists’ perceptions on end-of-life decisions found that some struggle to consider parents’ socioeconomic status and that others reflect on its ethical implications ( 41 ). Therefore, further research is needed to better understand problems and implications related to the influence of parents’ socioeconomic status, and how to support physicians in dealing with it during decision-making.…”

Section: Discussionmentioning

confidence: 99%

Neonatologists’ Resuscitation Decisions at Birth for Extremely Premature Infants. A Belgian Qualitative Study

et al. 2022

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ObjectiveDeciding whether initiating or withholding resuscitation at birth for extremely preterm infants (EPIs) can be difficult due to uncertainty on outcomes. Clinical uncertainty generates ethical uncertainty. Thus, physicians’ attitudes and perspectives on resuscitation of EPIs might influence resuscitation decisions. We aimed at understanding how neonatologists make clinical-ethical decisions for EPI resuscitation and how they perceive these decisions.MethodsWe performed a qualitative study using a constructivist account of grounded theory. Face-to-face, semi-structured in-depth interviews with neonatologists comprised data collection. For data analysis, we used the Qualitative Analysis Guide of Leuven.ResultsWe interviewed 20 neonatologists working in 10 hospitals in Belgium. Participants’ decision-making can be described as consensus-based, gestational age-based, contextualized, progressive, and shared. All participants agreed on the importance of using the consensus expressed in guidelines as a guidance for the decision-making, i.e., consensus-based. Consequently, all 20 participants use GA thresholds indicated in the guidelines, i.e., GA-based. However, they use these thresholds differently in their decisions. Few participants rigidly follow established thresholds. The vast majority reported using additional contextual factors as birthweight or parents’ wishes in the decision-making, rather than only the EPIs’ GA, i.e., contextualized. All participants agreed on the importance of involving the parents in the decision-making, i.e., shared, and indeed parents’ wishes were among the most valued factors considered in the decision-making. However, the extent to which parents were involved in the decision-making depended on the infant’s GA. Participants described a gray zone in which parents’ were viewed as the main decision-makers due to the high clinical uncertainty. This mean that participants tend to follow parents’ request even when they disagree with it. Outside the gray zone, physicians were viewed as the main decision-makers. This mean that, although parents’ wishes were still considered, counseling was more directive and the final decision was made by the physician.ConclusionAlthough an EPI’s GA remains the main factor guiding neonatologists’ resuscitation decisions, other factors are seriously considered in the decision-making process. All neonatologist participants agreed on the importance of involving parents in the decision-making. However, they involve parents differently depending on the EPI’s GA.

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“…These offered a good overview of what neonatologists prefer regarding EPI resuscitation but produced little insight into how neonatologists make these decisions and how they ethically legitimize their decisions. The few qualitative studies on the topic produced important insights on neonatologists’ preferences in terms of counselling [ 19 , 20 ] and end of life decisions [ 21 ]. They also suggested that the main ethical neonatologists encounter relate to appropriate counselling, parental involvement, and dealing with clinical uncertainty [ 22 – 25 ].…”

Section: Introductionmentioning

confidence: 99%

Neonatologists’ decision-making for resuscitation and non-resuscitation of extremely preterm infants: ethical principles, challenges, and strategies—a qualitative study

et al. 2021

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Background Deciding whether to resuscitate extremely preterm infants (EPIs) is clinically and ethically problematic. The aim of the study was to understand neonatologists’ clinical–ethical decision-making for resuscitation of EPIs. Methods We conducted a qualitative study in Belgium, following a constructivist account of the Grounded Theory. We conducted 20 in-depth, face-to-face, semi-structured interviews with neonatologists. Data analysis followed the qualitative analysis guide of Leuven. Results The main principles guiding participants’ decision-making were EPIs’ best interest and respect for parents’ autonomy. Participants agreed that justice as resource allocation should not be considered in resuscitation decision-making. The main ethical challenge for participants was dealing with the conflict between EPIs’ best interest and respect for parents’ autonomy. This conflict was most prominent when parents and clinicians disagreed about births within the gray zone (24–25 weeks). Participants’ coping strategies included setting limits on extent of EPI care provided and rigidly following established guidelines. However, these strategies were not always feasible or successful. Although rare, these situations often led to long-lasting moral distress. Conclusions Participants’ clinical–ethical reasoning for resuscitation of EPIs can be mainly characterized as an attempt to balance EPIs’ best interest and respect for parents’ autonomy. This approach could explain why neonatologists considered conflicts between these principles as their main ethical challenge and why lack of resolution increases the risk of moral distress. Therefore, more research is needed to better understand moral distress in EPI resuscitation decisions. Clinical Trial Registration: The study received ethical approval from the ethics committee of UZ/KU Leuven (S62867). Confidentiality of personal information and anonymity was guaranteed in accordance with the General Data Protection Regulation of 25 May 2018.

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Barriers to and Facilitators of End-of-Life Decision Making by Neonatologists and Neonatal Nurses in Neonates: A Qualitative Study

Cited by 13 publications

References 27 publications

Emotional Responses of Neonatal Intensive Care Nurses to Neonatal Death

Emotional Responses of Neonatal Intensive Care Nurses to Neonatal Death

Neonatologists’ Resuscitation Decisions at Birth for Extremely Premature Infants. A Belgian Qualitative Study

Neonatologists’ decision-making for resuscitation and non-resuscitation of extremely preterm infants: ethical principles, challenges, and strategies—a qualitative study

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