Parental Presence, Pediatric Ethics Consultation
Conditions
Keywords
Neonatal intensive care, End-of-life decision-making, Ethics consultation, Collegial meeting, Parental experience
Brief summary
In neonatal intensive care, physicians are sometimes confronted with decisions to withhold or withdraw life-sustaining treatment for a critically ill newborn. In France, these decisions are made by the medical team through a formal collegial ("ethics") meeting. Parents are not legally required to take part in this meeting, and their participation remains very rare at the national level. Since 2018, the neonatal intensive care unit of Hopital NOVO (Nord Ouest Val d'Oise) (Pontoise site) has systematically offered parents the possibility of attending the collegial ethics meeting concerning their child when withholding or withdrawal of treatment is being considered. This study aims to evaluate the value of parental presence at the ethics meeting in helping parents understand the medical decisions made for their newborn. This is a retrospective, single-centre, non-interventional, qualitative study based on a questionnaire developed specifically for this purpose, in the absence of any validated tool. Parents of newborns for whom an ethics meeting was held between 1 January 2018 and 31 December 2025 are invited to share their experience. Two questionnaire versions are used, one for parents who attended the meeting and one for parents who did not, allowing comparison between the two situations. The questionnaire explores parents' understanding of the decision, the emotional impact of the meeting, their sense of guilt and their acceptance of the decision. Main hypothesis: parental participation in the ethics meeting promotes a better understanding of the medical decision, reduces feelings of guilt, and improves parents' long-term emotional experience.
Detailed description
End-of-life decisions account for a substantial proportion of deaths in neonatal intensive care units, exceeding 70% in some cohorts in Europe and North America. These decisions are most often made following a multidisciplinary collegial decision-making process. In France, the legal framework (Loi Leonetti 2005, reinforced by Loi Claeys-Leonetti 2016) is based on the principles of non-obstination déraisonnable and proportionality of care. This framework does not require the formal presence of parents during collegial meetings. International literature on shared decision-making is associated with improved parental outcomes. A French multicenter study (Caeymaex et al., 2013) reported that parental involvement in end-of-life decisions was associated with lower rates of complicated grief, including reduced feelings of guilt and exclusion. Despite this, formal parental participation in collegial meetings remains uncommon in France, in the context of prevailing models of care and concerns regarding parental emotional burden. Since 2018, the neonatal intensive care unit at Hôpital NOVO has offered parents the option to attend collegial meetings. This process includes prior preparation by the attending physician, who clarifies that final medical responsibility remains with the healthcare team, as well as optional psychological support before and/or after the meeting. This model has been previously described (Boize et al., Arch Pédiatr, 2024), but parental subjective and emotional experiences have not been systematically evaluated. The PaReNCo study aims to assess these outcomes.
Interventions
None listed
Sponsors
Hôpital NOVO
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Adult parent (≥18 years) * Parent of a newborn for whom an ethics meeting was organized within the neonatal intensive care unit of Hôpital NOVO - Pontoise site * Ethics meeting organized between 01/01/2018 and 31/12/2025
Exclusion criteria
* Refusal to participate in the study (refusal to complete the questionnaire and refusal to allow use of the child's medical record data) * Parent with a major inability to understand the study (severe cognitive impairment) * Parent not understanding French and therefore unable to complete the questionnaire
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Parents' understanding of the medical decision made for their child following the ethics meeting. | Questionnaire completion (15 minutes per parent) | Self-reported understanding assessed with the study-specific questionnaire (items 14, 15, 16 and 17 for parents who attended the meeting; items 6, 7, 10 and 14 for parents who did not attend), with responses rated on a 1-5 Likert scale (1 = not all, 5 = completely). |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Overall emotional experience of the ethics meeting | Questionnaire completion (15 minutes per parent) | Overall emotional experience concerning the meeting, assessed using a study-specific questionnaire (questions 4, 5, 6, 7, 9, 12, 13 and 21 for parents who attended the meeting; questions 4, 5, 9, 13, 15 and 17 for parents who did not attend). |
| Parental attendance rate at the ethics meeting | Retrospective assessment for ethics meetings organized between 01/01/2018 and 31/12/2025 | Parental attendance rate at the ethics meeting, defined as the number of parents who attended the meeting divided by the number of parents invited to attend the meeting concerning their child. |
| Mortality rate of newborns for whom an ethics meeting was organized. | Retrospective assessment for ethics meetings organized between 01/01/2018 and 31/12/2025 | Number of deceased newborns divided by the number of newborns for whom an ethics meeting was organized, collected from the medical record |
| Parental feeling of guilt regarding the decision | Questionnaire completion (15 minutes per parent) | Parents' feeling of guilt at the time of the ethics meeting (questions 10 and 20 for parents present; questions 8 and 12 for parents not present). |
| Parental acceptance of the decision made by the medical team. | Questionnaire completion (15 minutes per parent) | Assessed using questionnaire items 8, 11, 18, 19, 22, 23, 24, 25 and 26 (parents present) and items 11 and 16 (parents not present). |
Countries
France
Contacts
CONTACTVéronique DA COSTA
PRINCIPAL_INVESTIGATORSuzanne BORRHOMEE, Dr
Hôpital NOVO - Site Pontoise
Outcome results
None listed