Klinische Ethikberatung in der Neonatologie in Deutschland – eine Bestandsaufnahme

The treatment of Extremely Low-Birth-Weight Infants (ELBW) – including those on the verge of viability – and mature infants with complex malformations has greatly improved due to modern intensive care technologies, so that neonates can survive even in case of extreme immaturity or malformation syndromes. However, increased survival rate leads to increased risk of short- or long-term complications and/or impairments. Therefore, more complex situations in neonatology requiring decisions cannot be resolved solely based on medical data. Health care professionals in Neonatal Intensive Care Units (NICU) experience ethical challenges and value-related conflicts, for example questions of withdrawing or withholding life-sustaining therapy. In these critical cases, Clinical Ethics Counselling (CEC) can provide support - an instrument which has been implemented in German hospitals, expanded in the last decade and is increasingly being used and recognized. To the best of our knowledge, there is, however, no information available on CEC in neonatology, a rather new specialty. Medical techniques and challenges continued developing in the last years; nevertheless, treatment in neonatology differs considerably from adult medicine. Since relevant differences exist between both worlds, the same may apply to corresponding ethical challenges and conflicts. Consequently, it is important to know whether and how CEC is established in German NICUs. In addition, the present work is interested in how CEC is perceived by the health care professionals involved. In recent decades birth centers together with level III/IV NICUs have been established in Germany as centers of perinatology (PNC) with contrary levels of specialization (PNC level I/II) for the care of pregnant women and premature or full-term infants. Questionnaires were sent to chief physicians of pediatric hospitals (n=213) [questionnaire A] and heads of NICUs (consultant/nursing staff) [questionnaire B]. The questionnaires contained quantitative questions and free text. Anonymized data were analyzed by descriptive data analysis and qualitative open-text analysis. Chief physicians (response rate questionnaire A 39%) stated that CEC - predominantly in the form of a Clinical Ethics Committee (78%) - was established and available for their NICU (90%). However, CEC was not used at all in 17% and only rarely (every 4-6 months) in 49% of NICUs. Overall, CEC was rated as (very) helpful (7.9). The evaluation of how helpful ethics consultation is differed highly significantly in the groups of different use (F(3,76)=4.869, p=0.004). Amongst management of NICUs (20 chief physicians, 56 consultants, 52 senior nurses), 70% stated that they used CEC and perceived CEC as very helpful (8.3) and a support in everyday clinical practice (8.5) (questionnaire B). The number of Ethics Case Consultations correlates significantly with the assessment of general usefulness (r=0.224, p=0.033) as well as with perceived support (r=0.41, p<0.001). Senior nurses (M=8.8, SD=1.4) felt slightly more supported by CEC than physicians (M=8.0, SD=2.0) [t=-2.298, p=0 .23, Cohen's sd=0.42]. Reasons for counselling can be assigned to three topics: (1) desire in the team for structured reflection in cases of prognostic uncertainty/ambiguity, (2) (moral) dissent and (3) moral conflicts. In terms of content, the majority of questions were related to withdrawing or withholding life-sustaining therapy in premature or full-term infants with complications. Most of the participants named the following positive effects of CEC: reflected, structured decisions in difficult situations comprising all professions involved and a "neutral authority", greater (legal) certainty, emotional relief and improvement of communication. Organizational problems, especially time requirements, dependence on hierarchies, and team members’ point of view were named as barriers in CECs. In addition, high emotional challenges of the counselors and the need for neonatal background knowledge of the counselors themselves are seen as CEC limitations. In most NICUs CEC is available, but is rarely used, although it is perceived as useful and helpful by all professions interrogated. There is a positive correlation between usage of and favorable assessment of CECs, although it remains to be determined if a favorable assessment depends on more frequent usage or vice versa (problem of causality). The different assessments of CEC by physicians and nurses points to effects of proximity to the patients and the families. These contrasting assessments show the need for lower-threshold accessibility of CEC and could reduce logistical difficulties. Ethics advisors should also have specific neonatal background knowledge for moderation at NICUs. The (still) rather reserved use of ethics consultation in neonatal intensive care units suggests that ethics consultation in the context of low-threshold, preventive offers could be even more useful. Ethics rounds and liaison services according to the Marburg model could support ethics counselors in gaining experience with neonatal issues and at the same time sensitize the inter-professional and interdisciplinary team for ethical issues and strengthen ethical competencies.