Doctor-Parent Disagreement for Preterm Infants Born in the Grey Zone: Do Ethical Frameworks Help?

OBJECTIVE: To examine i) how ethical frameworks can be used in concrete cases of parent-doctors' disagreements for extremely preterm infants born in the grey zone to guide such difficult decision-making; and ii) what challenges stakeholders may encounter in using these frameworks. DESIGN: We did a case analysis of a concrete case of parent-doctor disagreement in the grey zone using two ethical frameworks: the best interest standard and the zone of parental discretion. RESULTS: Both ethical frameworks entailed similar advantages and challenges. They have the potential 1) to facilitate decision-making because they follow a structured method; 2) to clarify the situation because all relevant ethical issues are explored; and 3) to facilitate reaching an agreement because all parties can explain their views. We identified three main challenges. First, how to objectively evaluate the risk of severe disability. Second, parents' interests should be considered but it is not clear to what extent. Third, this is a value-laden situation and different people have different values, meaning that the frameworks are at least partially subjective. CONCLUSIONS: These challenges do not mean that the ethical frameworks are faulty; rather, they reflect the complexity and the sensitivity of cases in the grey zone.

Chinese and Belgian pediatricians' perspectives toward pediatric palliative care: an online survey.

BACKGROUND: As pediatricians play a vital role in pediatric palliative care (PPC), understanding their perspectives toward PPC is important. PPC is established for a long time in Belgium, but has a shorter tradition in China, although it is growing in the last decade. Sampling and comparing the perspectives of these pediatricians could be insightful for both countries. Therefore, we sampled and compared perspectives of pediatricians in China and Belgium toward PPC, and explored factors influencing their perspectives. METHODS: We conducted a cross-sectional online survey using the validated Pediatric Palliative Care Attitude Scale (PPCAS). Over a five-month period, we recruited pediatricians practicing in China (C) and Flanders (F), Belgium. Convenience sampling and snowballing were used. We analyzed data with descriptive statistics, and evaluated group differences with univariate, multivariate and correlation tests. RESULTS: 440 complete surveys were analyzed (F: 115; C: 325). Pediatricians in both regions had limited PPC experience (F: 2.92 ± 0.94; C: 2.76 ± 0.92). Compared to Flemish pediatricians, Chinese pediatricians perceived receiving less unit support (F: 3.42 ± 0.86; C: 2.80 ± 0.89); perceived PPC less important (F: 4.70 ± 0.79; C: 4.18 ± 0.94); and faced more personal obstacles while practicing PPC (F: 3.50 ± 0.76; C: 2.25 ± 0.58). Also, select socio-demographic characteristics (e.g., experiences caring for children with life-threatening condition and providing PPC) influenced pediatricians' perspectives. Correlational analyses revealed that pediatricians' PPC experiences significantly correlated with perceived unit support (ρF = 0.454; ρC=0.661). CONCLUSIONS: Chinese pediatricians faced more barriers in practicing PPC. Expanding PPC experiences can influence pediatricians' perspectives positively, which may be beneficial for the child and their family.

Ethical reflections on organizing the first human trial of artificial womb technologies.

OBJECTIVE: To investigate how to protect participants in the artificial womb technology (AWT) human trials. METHOD: We compared randomized controlled trials and single arm trials to understand which trial design best balances the interests of science and participants. We also compared AWT trials with comparable settings to understand how to protect participants. RESULTS: Randomized trials might fail in reaching a sizeable sample, which could pointlessly expose participants to risks. Furthermore, parents who choose to participate in the trial might expect to receive AWT. Failed expectations might distress parents and hinder the therapeutic relationship. The trial is divided into two steps. First, delivery into AWT involves two participants: the mother and the fetus. As AWT requires a C-section, the procedure cannot be carried out without the mother's consent regardless of fetal benefit. Treatment in AWT, involves one participant: the infant. As for any other invasive intervention, the AWT trial should be suspended if harmful. CONCLUSIONS: A single arm trial could prevent some of the methodological and ethical challenges of the randomized trials. Moreover, better decisional tools should be developed to help parents decide whether to participate in the AWT trial. For example, using visual aids or showing the AWT.

Physicians' attitudes and experiences about withholding/withdrawing life-sustaining treatments in pediatrics: a systematic review of quantitative evidence.

BACKGROUND: One of the most important and ethically challenging decisions made for children with life-limiting conditions is withholding/withdrawing life-sustaining treatments (LST). As important (co-)decision-makers in this process, physicians are expected to have deeply and broadly developed views. However, their attitudes and experiences in this area remain difficult to understand because of the diversity of the studies. Hence, the aim of this paper is to describe physicians' attitudes and experiences about withholding/withdrawing LST in pediatrics and to identify the influencing factors. METHODS: We systematically searched Pubmed, Cinahl®, Embase®, Scopus®, and Web of Science™ in early 2021 and updated the search results in late 2021. Eligible articles were published in English, reported on investigations of physicians' attitudes and experiences about withholding/withdrawing LST for children, and were quantitative. RESULTS: In 23 included articles, overall, physicians stated that withholding/withdrawing LST can be ethically legitimate for children with life-limiting conditions. Physicians tended to follow parents' and parents-patient's wishes about withholding/withdrawing or continuing LST when they specified treatment preferences. Although most physicians agreed to share decision-making with parents and/or children, they nonetheless reported experiencing both negative and positive feelings during the decision-making process. Moderating factors were identified, including barriers to and facilitators of withholding/withdrawing LST. In general, there was only a limited number of quantitative studies to support the hypothesis that some factors can influence physicians' attitudes and experiences toward LST. CONCLUSION: Overall, physicians agreed to withhold/withdraw LST in dying patients, followed parent-patients' wishes, and involved them in decision-making. Barriers and facilitators relevant to the decision-making regarding withholding/withdrawing LST were identified. Future studies should explore children's involvement in decision-making and consider barriers that hinder implementation of decisions about withholding/withdrawing LST.

Physician decision-making process about withholding/withdrawing life-sustaining treatments in paediatric patients: a systematic review of qualitative evidence.

BACKGROUND: With paediatric patients, deciding whether to withhold/withdraw life-sustaining treatments (LST) at the end of life is difficult and ethically sensitive. Little is understood about how and why physicians decide on withholding/withdrawing LST at the end of life in paediatric patients. In this study, we aimed to synthesise results from the literature on physicians' perceptions about decision-making when dealing with withholding/withdrawing life-sustaining treatments in paediatric patients. METHODS: We conducted a systematic review of empirical qualitative studies. Five electronic databases (Pubmed, Cinahl®, Embase®, Scopus®, Web of Science™) were exhaustively searched in order to identify articles published in English from inception through March 17, 2021. Analysis and synthesis were guided by the Qualitative Analysis Guide of Leuven. RESULTS: Thirty publications met our criteria and were included for analysis. Overall, we found that physicians agreed to involve parents, and to a lesser extent, children in the decision-making process about withholding/withdrawing LST. Our analysis to identify conceptual schemes revealed that physicians divided their decision-making into three stages: (1) early preparation via advance care planning, (2) information giving and receiving, and (3) arriving at the final decision. Physicians considered advocating for the best interests of the child and of the parents as their major focus. We also identified moderating factors of decision-making, such as facilitators and barriers, specifically those related to physicians and parents that influenced physicians' decision-making. CONCLUSIONS: By focusing on stakeholders, structure of the decision-making process, ethical values, and influencing factors, our analysis showed that physicians generally agreed to share the decision-making with parents and the child, especially for adolescents. Further research is required to better understand how to minimise the negative impact of barriers on the decision-making process (e.g., difficult involvement of children, lack of paediatric palliative care expertise, conflict with parents).

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

Objective: Deciding 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. Methods: We 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. Results: We 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. Conclusion: Although 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.

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

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.

Ethics of resuscitation for extremely premature infants: a systematic review of argument-based literature.

OBJECTIVE: To present (1) the ethical concepts related to the debate on resuscitation of extremely premature infants (EPIs) as they are described in the ethical literature; and (2) the ethical arguments based on these concepts. DESIGN: We conducted a systematic review of the ethical literature. We selected articles based on the following predefined inclusion/exclusion criteria: (1) English language articles (2) presenting fully elaborated ethical arguments (3) on resuscitation (4) of EPIs, that is, infants born before 28 weeks of gestation. ANALYSIS: After repeated reading of articles, we developed individual summaries, conceptual schemes and an overall conceptual scheme. Ethical arguments and concepts were identified and analysed. RESULTS: Forty articles were included out of 4709 screened. Personhood, best interest, autonomy and justice were concepts grounding the various arguments. Regarding these concepts, included authors agreed that the best interest principle should guide resuscitation decisions, whereas justice seemed the least important concept. The arguments addressed two questions: Should we resuscitate EPIs? Who should decide? Included authors agreed that not all EPIs should be resuscitated but disagreed on what criteria should ground this decision. Overall, included authors agreed that both parents and physicians should contribute to the decision. CONCLUSIONS: The included publications suggest that while the best interest is the main concept guiding resuscitation decisions, justice is the least important. The included authors also agree that both parents and physicians should be actively involved in resuscitation decisions for EPIs. However, our results suggest that parents' decision should be over-ridden when in contrast with the EPI's best interest.

Physicians' Attitudes on Resuscitation of Extremely Premature Infants: A Systematic Review.

CONTEXT: Whether to resuscitate extremely premature infants (EPIs) is a clinically and ethically difficult decision to make. Indications and practices vary greatly across different countries and institutions, which suggests that resuscitation decisions may be influenced more by the attitudes of the individual treating physicians. Hence, gaining in-depth insight into physicians' attitudes improves our understanding of decision-making regarding resuscitation of EPIs. OBJECTIVE: To better understand physicians' attitudes toward resuscitation of EPIs and factors that influence their attitudes through a systematic review of the empirical literature. DATA SOURCES: Medline, Embase, Web of Science, and Scopus. STUDY SELECTION: We selected English-language articles in which researchers report on empirical studies of physicians' attitudes toward resuscitation of EPIs. DATA EXTRACTION: The articles were repeatedly read, themes were identified, and data were tabulated, compared, and analyzed descriptively. RESULTS: Thirty-four articles were included. In general, physicians were more willing to resuscitate, to accept parents' resuscitation requests, and to refuse parents' nonresuscitation requests as gestational age (GA) increased. However, attitudes vary greatly for infants at GA 23 to 24 weeks, known as the gray zone. Although GA is the primary factor that influences physicians' attitudes, a complex interplay of patient- and non-patient-related factors also influences their attitudes. LIMITATIONS: Analysis of English-only articles may limit generalizability of the results. In addition, authors of only 1 study used a qualitative approach, which may have led to a biased reductionist approach to understanding physicians' attitudes. CONCLUSIONS: Although correlations between GA and attitudes emerged, the results suggested a more complex interplay of factors influencing such attitudes.

How do community-dwelling LGBT people perceive sexuality in residential aged care? A systematic literature review.

OBJECTIVES: To investigate what empirical studies report on the perceptions of community-dwelling LGBT adults regarding sexuality and sexual expression in residential aged care (RAC), and how their sexuality should be addressed in RAC. METHODS: Relevant papers were identified through electronic searches in databases; and by reference tracking and citation tracking. Data were extracted using a standardized data extraction form and were compared, related, and synthesized using thematic analyses. We evaluated the methodological quality of the studies. RESULTS: Eighteen articles were identified. Three major topics emerged regarding sexuality in RAC: (1) factors affecting LGBT people's perceptions, subdivided into (a) discrimination, (b) loss of sexual identity, (c) failure to acknowledge the same-sex partner, and (d) lack of privacy; (2) LGBT-specific RAC facilities; and (3) characteristics of LGBT friendly RAC facilities and caregivers. CONCLUSIONS: LGBT people have clear perceptions about how sexuality and sexual expression is or should be managed in RAC. Despite the general increase in acceptance of sexual minorities, many community-dwelling LGBT people believe older LGBT residents are discriminated against because of their sexual orientation or gender identity. Taking into account these opinions is crucial for increasing accessibility of RAC to LGBT people and to ensure the quality of the provided care.

Nurses' experiences and reactions towards intimacy and sexuality expressions by nursing home residents: A qualitative study.

OBJECTIVES: To better understand how nurses experience and react to intimate and sexual expressions of nursing home residents. BACKGROUND: Although many nursing home residents continue to desire intimacy and sexual expression, they commonly perceive negative attitudes of nursing staff towards them as a major barrier to their sexual well-being. To eliminate this barrier, it is crucial to gain a more in-depth understanding of nurses' personal experiences and reactions towards intimacy and sexuality in aged care. DESIGN: Our study used a qualitative design, rooted in grounded theory. METHODS: Semi-structured interviews with 15 nurses between 34 and 59 years of age were conducted. Participating nurses were recruited from seven different nursing homes in Flanders, Belgium. We used the Qualitative Analysis Guide of Leuven (QUAGOL) for data analysis. We followed the COREQ guidelines to ensure rigour in our study. RESULTS: Nurses experienced and dealt with intimate and sexual expressions of residents in an individual way, which was focused on setting and respecting their own sexual boundaries and those of residents and family members. Depending on their comfort level with residents' expressions, nurses responded in three ways: active facilitation, tolerance and termination. Nurses' responses depended on contextual factors, including their personal experiences with sexuality, the nature of their relationship with the residents involved, the presence of dementia and the organisational culture of the facility. CONCLUSIONS: Nurses face a wide range of experiences and emotions when confronted with residents' expressions of sexuality and intimacy. A supportive approach is needed to guide nurses in dealing with these highly sensitive situations. This approach can be promoted at the institutional level through continuous educational programmes. RELEVANCE TO CLINICAL PRACTICE: This study advocates a contextual and interpretative ethical approach to sexuality in older adults, taking as starting point nurses' own vulnerability and that of residents and relatives.