Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses

Abstract

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.

Decision aids available for parents making end‐of‐life or palliative care decisions for children: A scoping review

“…The high number of aids focused on infants may be due to the high number of deaths occurring during infancy or the particular decision‐making challenges in this population. Decisions regarding whether life‐sustaining treatments should be enacted, especially at the limits of viability with the uncertain risk of severe physical or cognitive impairment, or regarding who should be making EOL decisions – parents or clinicians – are particularly difficult. These decisions may also need to be made quickly in a high‐stress situation following an unexpected preterm birth.…”

Active care of infants born between 22 and 26 weeks of gestation does not follow consensus expert recommendations

“…Nevertheless, it is also acknowledged that a myriad of other factors, including clinician (33) and parental (34) opinions, cultural considerations (35) and economic factors (36), play a role in the ultimate decision-making process. Clinician opinion may differ from each other (33) or from parents (34). Cultural differences may be important.…”

Das Lebensende in der Schweiz - Individuelle und gesellschaftliche Perspektiven

“…Diese letzte Antwort wurde deutlich häufiger in der Romandie (über 30 Prozent) als in der Deutschschweiz (ca. 18 Prozent) und von den Pflegefachkräften (25 Prozent) deutlich öfter als von der Ärzteschaft (12 Prozent) gegeben (Bucher et al, 2018;Hendriks et al, 2017b). Eine repräsentative Telefonumfrage hat dagegen ergeben, dass sich die grosse Mehrheit der befragten Bevölkerung (ca.…”

“…Bemerkenswert ist die Diskrepanz der Einschätzung bei der Annahme, die Eltern seien nicht in der Lage, die unterschiedlichen Entscheidungsmöglichkeiten und deren Folgen gänzlich zu verstehen: Dies wurde von 80 Prozent der Pflegefachpersonen, hingegen nur von 40 Prozent der Ärzteschaft als Begründung für die bevormundende Vorgehensweise bejaht. Ebenfalls auffällig ist die unterschiedliche Einschätzung der Annahme, die Verantwortung solcher Entscheidungen liege ausschliesslich bei den behandelnden Ärztinnen und Ärzten: Dies wurde von knapp zwei Dritteln der Romands, hingegen nur von gut einem Drittel der Deutschschweizer Expertinnen und Experten bejaht (Bucher et al, 2018;Hendriks et al, 2017b).…”

“…Das dürfte insbesondere damit zusammenhängen, dass bei Neugeborenen an der Grenze der Lebensfähigkeit stets stellvertretende Entscheidungen zu treffen sind und eine besondere Schwierigkeit darin besteht, dass sich die Folgen einer Massnahme für die zukünftige Lebensqualität des Kindes nicht oder zumindest kaum einschätzen lässt. Für die Schweiz liegen repräsentative Ergebnisse vor, die auf der Befragung von Expertinnen und Experten aus den Schweizer Neonatologie-Kliniken beruhen (Bucher et al, 2018). Es zeigt sich, dass fast alle Pflegefachpersonen sowie Ärztinnen und Ärzte (über 90 Prozent) der Meinung zustimmen, ein zentrales Ziel ihrer Tätigkeit liege in einer möglichst hohen Lebensqualität der überlebenden Kinder.…”