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When extremely premature birth between 24+0-26+0 weeks of gestation is imminent, parents and physicians face complex decisions regarding early intensive care or palliative comfort care for their infant. Guidelines recommend a shared decision-making approach to make this decision with an important role for parental values and preferences. In this process, the role of emotions and intuition can be challenging. Studies show that clarifying values appears to be difficult for healthcare providers. Understanding these values and the role of intuition is crucial for providing personalized counselling and further improving shared decision making.
As part of the TINY-study, a collaboration between LUMC, Erasmus MC and Radboudumc, the results of the TINY-2 study have been published in Archives of Diseases in Childhood: Fetal and Neonatal Edition. By interviewing parents, the study aimed to explore (I) what parents considered important values when faced with an imminent extremely premature birth, (II) whether they relied on their intuition during this decision and (III) how they think clarifying values should be performed.
Various considerations and underlying values were found to be important, such as the infants’ future referring to late consequences of the extremely premature birth and quality of life, but also the impact on family life. Parents recognized the influence of emotions and intuition in decision-making and struggled to articulate their values, emphasizing the need for guidance. Many parents desire an active role in exploring their values and wish for help of healthcare professionals to facilitate that. They suggested that healthcare providers should engage in open, personalized discussions to facilitate value exploration, enabling informed decisions aligned with parental values. An multidisciplinary approach was another suggestion to help parents in the exploration of their values.
Further research is needed to explore the role of intuition in these decisions and to identify methods for healthcare professionals to improve their skills in facilitating value clarification. By creating conditions that support open dialogue about parental values, healthcare providers can better support families during one of the most difficult and emotion loading decisions they may ever face.
Publication
de Boer A, De Proost L, de Vries M, Hogeveen M, de Vries MC, Verweij EJT (Joanne), Geurtzen R. Voices of experience: what Dutch parents teach us about values and intuition in periviable decisions. Arch Dis Child Fetal Neonatal Ed. 2024 Aug 17:fetalneonatal-2024-327400. doi: 10.1136/archdischild-2024-327400. PMID: 39153843.
