Decision-Making in Imminent Extreme Premature Births: Perceived Shared Decision-Making, Parental Decisional Conflict and Decision Regret
Decision Making; Medical ethics; Paediatrics; Palliative care; premature birth; Quality of life
Objective: To describe levels of perceived shared decision making (SDM), decisional conflict (DC), and decision regret (DR) in prenatal counseling by pregnant women, partners, neonatologists, and obstetricians regarding decision-making around imminent extreme premature birth in which a decision about palliative comfort care versus early intensive care had to be made. Study design: Multicenter, cross-sectional study using surveys to determine perceived SDM at imminent extreme premature birth in parents and physicians, and to determine DC and DR in parents. Result(s): In total, 73 participants from 22 prenatal counseling sessions were included (21 pregnant women, 20 partners, 14 obstetricians, 18 neonatologists). High perceived levels of SDM were found (median 82,2), and low levels of DC (median 23,4) and DR at one month (median 12, 5). Conclusion(s): Reported levels of self-perceived SDM in the setting of prenatal counseling in extreme prematurity were high, by both the parents and the physicians. Levels of DC and DR were low. Copyright © 2021, The Author(s), under exclusive licence to Springer Nature America, Inc.
Geurtzen R; van den Heuvel JFM; Huisman JJ; Lutke HEM; Bekker MN; Hogeveen M
Journal of Perinatology
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1038/s41372-021-01159-7" target="_blank" rel="noreferrer noopener">10.1038/s41372-021-01159-7</a>
What hinders and helps in the end-of-life decision-making process for children: Parents' and physicians' views
ethics; decision-making; paediatrics; communication; end-of-life decisions
AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71 physicians. The end-of-life decisions mainly concern decisions to withhold or withdraw life-sustaining treatment. RESULTS: The importance of taking sufficient time and exchanging clear, neutral and relevant information was main facilitators expressed by both parents and physicians. Lack of time, uncertain information and changing doctors were seen as important barriers by both parties. Most facilitators and barriers could be seen as two sides of the same coin, but not always. For example, some parents and physicians considered the fact that parents hold strong opinions as a barrier while others considered this a facilitator. Furthermore, parents and physicians showed differences. Parents especially underlined the importance of physician-related facilitators, such as a personalised approach, empathy and trust. On the contrary, physicians underlined the importance of the child's visible deterioration and parents' awareness of the seriousness of their child's condition and prognosis as facilitators of EoLDM. CONCLUSIONS: This study gained insight into what parents and physicians experience as the main barriers and facilitators in EoLDM for neonates and children.
Zaal-Schuller IH; Geurtzen R; Willems D; de Vos MA; Hogeveen M
Acta Paediatrica
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.16250" target="_blank" rel="noreferrer noopener">10.1111/apa.16250</a>
Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing
Digital health; IPDAS; Neonatology; Obstetrics; Patient decision aid; Prematurity; Shared decision making
BACKGROUND: In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is needed to agree on the treatment option in case labor progresses. This article described the development of a digital decision aid (DA) to support pregnant women, partners and clinicians in prenatal counseling for imminent extreme premature labor. METHOD(S): This DA is developed following the International Patient Decision Aid Standards. The Dutch treatment guideline and the Dutch recommendations for prenatal counseling in extreme prematurity were used as basis. Development of the first prototype was done by expert clinicians and patients, further improvements were done after alpha testing with involved clinicians, patients and other experts (n=12), and beta testing with non-involved clinicians and patients (n=15). RESULT(S): The final version includes information, probabilities and figures depending on users' preferences. Furthermore, it elicits patient values and provides guidance to aid parents and professionals in making a decision for either early intensive care or palliative comfort care in threatening extreme premature delivery. CONCLUSION(S): A decision aid was developed to support prenatal counseling regarding the decision on early intensive care versus palliative comfort care in case of extreme premature delivery at 24 weeks gestation. It was well accepted by parents and healthcare professionals. Our multimedia, digital DA is openly available online to support prenatal counseling and personalized, shared decision-making in imminent extreme premature labor. Copyright © 2022. The Author(s).
van den Heuvel JFM; Hogeveen M; Lutke Holzik M; van Heijst AFJ; Bekker MN; Geurtzen R
BMC medical informatics and decision making
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12911-021-01735-z" target="_blank" rel="noreferrer noopener">10.1186/s12911-021-01735-z</a>