Parent-centered ethical decision making for preterm infants born near the limit of viability—reflection on the significance of probabilistic prognoses as a basis for shared decision making

Kidszun, André

doi:10.1007/s00481-021-00653-y

Cited by 3 publications

(2 citation statements)

References 65 publications

(64 reference statements)

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“…Personal attitudes and values appear to be more important 4,5 . There is some evidence that attitudes about quality of life influence preferences for palliative or life‐sustaining therapy 3,6 . However, little is known about the attitudes towards the shared decision‐making process with physicians and the values that are relevant to expectant mothers' preferences for either life‐sustaining or palliative treatment options.…”

Section: Introductionmentioning

confidence: 99%

“…4,5 There is some evidence that attitudes about quality of life influence preferences for palliative or life-sustaining therapy. 3,6 However, little is known about the attitudes towards the shared decision-making process with physicians and the values that are relevant to expectant mothers' preferences for either life-sustaining or palliative treatment options. The aim of this study was to explore attitudes and values towards decisions at the margin of viability among expectant mothers at risk for preterm birth.…”

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confidence: 99%

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Attitudes and values towards decisions at the margin of viability among expectant mothers at risk for preterm birth

Arnold,

Inthorn,

Roth

et al. 2023

Acta Paediatrica

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AimTo explore how expectant mothers at risk for preterm birth would like to be involved in decision‐making at the margin of viability and what they would base their decisions on.MethodsThis cross‐sectional observational study included a mixed‐methods post‐hoc analysis alongside a previously reported randomised clinical trial. Expectant mothers between 280/7 and 366/7 weeks' gestation who were hospitalised for risk of preterm birth responded to written case vignettes of an impending preterm birth at the margin of viability. Participants responded to closed and open‐ended questions that were theoretically coded for attitudes and values towards shared decision‐making.ResultsSixty‐four expectant mothers were included in the analysis, 36 provided written perspectives. Decision‐making was perceived as an enormous burden and a potential source of guilt and regret. Weighing personal values in terms of ‘fighting for the baby’ and ‘quality of life’ were used to inform the decision‐making process. Explicitly stating that any decision is a good decision, empowerment through co‐constructing shared decisions rather than simply presenting choices, sharing the clinicians' personal views, and honest, and empathetic counselling were perceived as supportive.ConclusionMothers at risk for preterm birth provided specific insights into their decision‐making patterns that may be helpful to clinicians.

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Section: Introductionmentioning

confidence: 99%

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confidence: 99%

Attitudes and values towards decisions at the margin of viability among expectant mothers at risk for preterm birth

Arnold,

Inthorn,

Roth

et al. 2023

Acta Paediatrica

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„Hiobsbotschaften“ – Kommunikation schlechter Nachrichten

Seidel,

Nolte-Buchholtz,

Reichert

2023

Monatsschr Kinderheilkd

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Shared decision-making, quality of life, and the child’s best interest: ethical challenges in decision-making in preterm infants at the limit of viability

Carvalho,

Primc

2023

Ethik Med

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ZusammenfassungBehandlungsentscheidungen bei Frühgeburten an der Grenze der Lebensfähigkeit stellen eine große Herausforderung dar. In der Neonatologie hat sich das Konzept einer prognostischen Grauzone etabliert, die als ein Grenzbereich verstanden wird, in dem sich aus medizinischer Sicht die Nutzen-Risiko-Abwägung aufgrund der unsicheren Prognose sehr schwierig gestaltet und sich aus ethischer Sicht sowohl eine kurative als auch eine palliative Versorgung prinzipiell rechtfertigen lassen. Innerhalb der Grauzone wird zumeist eine gemeinsame Entscheidungsfindung mit den Eltern in Form eines „shared-decision making“ (SDM) favorisiert, die sich an dem besten Interesse des Neugeborenen orientieren soll. Allerdings findet sich kein Konsens dazu, wie diese Anforderungen umzusetzen sind. Im vorliegenden Beitrag werden unter Einbeziehung der empirischen Studienlage ethische Anforderungen an die Umsetzung des SDM formuliert. Es wird gezeigt, dass Eltern bzw. Schwangere unterschiedliche Präferenzen hinsichtlich der Art ihrer Einbindung haben. Hieraus ergibt sich aus ethischer Sicht die Anforderung, im Rahmen des SDM gemeinsam herauszuarbeiten, welche Rolle sie bei der Entscheidungsfindung einnehmen wollen und welche Präferenzen und Werte für sie bei der Therapieentscheidung von Relevanz sind. Zudem wird in unserer Untersuchung auf die Frage eingegangen, inwiefern die zu erwartende Lebensqualität der Kinder in die Bestimmung des besten Interesses der Neugeborenen einbezogen werden kann. Es wird gezeigt, dass in der prognostischen Grauzone neben den Präferenzen der Eltern bzw. Schwangeren gegenwärtig kaum Kriterien zur inhaltlichen Bestimmung des besten Interesses des Neugeborenen zur Verfügung stehen – ein wesentlicher Grund, der aus ethischer Sicht für die Implementierung des skizzierten Modells des SDM spricht.

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Parent-centered ethical decision making for preterm infants born near the limit of viability—reflection on the significance of probabilistic prognoses as a basis for shared decision making

Cited by 3 publications

References 65 publications

Attitudes and values towards decisions at the margin of viability among expectant mothers at risk for preterm birth

Attitudes and values towards decisions at the margin of viability among expectant mothers at risk for preterm birth

„Hiobsbotschaften“ – Kommunikation schlechter Nachrichten

Shared decision-making, quality of life, and the child’s best interest: ethical challenges in decision-making in preterm infants at the limit of viability

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