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.

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BackgroundIn 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.MethodsAll 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.ResultsNinety 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.ConclusionsPhysicians 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.Electronic supplementary materialThe online version of this article (10.1186/s12887-018-1040-z) contains supplementary material, which is available to authorized users.

Objective Evidence suggests benefits of long‐term follow‐up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated the supportive care needs of survivors beyond the domain of information and communication. Therefore, this qualitative study aimed to assess the unmet needs of childhood cancer survivors with regards to their long‐term survivorship. Methods Childhood Cancer Switzerland invited survivors of childhood cancer to participate in our study. We used semistructured interviews to assess survivors' experiences regarding the impact of their disease and the (un)met needs during their survivorship. Data analysis followed the principles of qualitative content analysis. Results Interviews were conducted with 28 childhood cancer survivors (mean age 31 years, age at diagnosis 9 years, time since end of treatment 19 years). Key themes in relation to unmet needs of survivors were (1) lacking psychosocial support, (2) lacking collaboration and decentralization of care, (3) starting from zero, and (4) need for centralized, specialized, and individualized services. Conclusions Our findings revealed a demand for integrating psychosocial support in long‐term follow‐up care and a strong need for personalized, centralized, and interdisciplinary long‐term follow‐up care. Current established interdisciplinary clinics should be further extended to provide centralized, personalized, and evidence‐based long‐term follow‐up care including adequate psychosocial support for all childhood cancer survivors.

Aim: Studies have provided insights into the different attitudes and values of healthcare professionals and parents towards extreme prematurity. This study explored societal attitudes and values in Switzerland with regard to this patient group.Methods: A nationwide trilingual telephone survey was conducted in the French-, Germanand Italian-speaking regions of Switzerland to explore the general population's attitudes and values with regard to extreme prematurity. Swiss residents of 18 years or older were recruited from the official telephone registry using quota sampling and a logistic regression model assessed the influence of socio-demographic factors on end-of-life decision-making.Results: Of the 5112 people contacted, 1210 (23.7%) participated. Of these 5% were the parents of a premature infant and 26% knew parents with a premature infant. Most participants (77.8%) highlighted their strong preference for shared decision-making, and 64.6% said that if there was dissent then the parents should have the final word. Overall, our logistic regression model showed that regional differences were the most significant factors influencing decision-making.

Aim Due to scarce available national data, this study assessed current attitudes of neonatal caregivers regarding decisions on life‐sustaining interventions, and their views on parents' aptitude to express their infant's best interest in shared decision‐making. Methods Self‐administered web‐based quantitative empirical survey. All 552 experienced neonatal physicians and nurses from all Swiss NICUs were eligible. Results There was a high degree of agreement between physicians and nurses (response rates 79% and 70%, respectively) that the ability for social interactions was a minimal criterion for an acceptable quality of life. A majority stated that the parents' interests are as important as the child's best interest in shared decision‐making. Only a minority considered the parents as the best judges of what is their child's best interest. Significant differences in attitudes and values emerged between neonatal physicians and nurses. The language area was very strongly associated with the attitudes of neonatal caregivers. Conclusion Despite clear legal requirements and societal expectations for shared decision‐making, survey respondents demonstrated a gap between their expressed commitment to shared decision‐making and their view on parental aptitude to formulate their infant's best interest. National guidelines need to address these barriers to shared decision‐making to promote a more uniform nationwide practice.

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.

Objectives: Despite established principles of perinatal palliative care (PnPC), implementation into practice has shown inconsistencies. The aim of this study was to assess PnPC services, examine healthcare professionals (HCPs) awareness and availability of PnPC guidelines, and describe HCPs satisfaction with PC and guidelines.Material and Methods: A nationwide survey was conducted in Swiss tertiary NICUs between April-November 2019. Data were examined by descriptive statistics and linear regression models.Results: Overall response rate was 54% (65% physicians; 49% nurses; 72% psychosocial staff). Half of professionals (50%) received education in PC during their medical/nursing school, whereas 36% indicated they obtained further training in PnPC at their center. PnPC guidelines were available in 4/9 centers, with 68% HCPs being aware of the guideline. Professionals who had access to a PnPC team (P = 0.001) or were part of the nursing (P = 0.003) or psychosocial staff (P = 0.001) were more likely aware of having a guideline. Twenty-eight percent indicated being satisfied with PC in their center. Professionals with guideline awareness (P = 0.025), further training (P = 0.001), and access to a PnPC team (P < 0.001) were more likely to be satisfied, whereas HCPs with a nursing background (P < 0.001) were more likely to be dissatisfied. A majority expressed the need for a PnPC guideline (80%) and further PC training (94%).Conclusion: This study reveals lacking PnPC guidelines and divergences regarding onsite opportunities for continued training across Swiss level III NICUs. Extending PnPC guidelines and training services to all centers can help bridge the barriers created by fragmented practice.