Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement

• Published in: BMC palliative care Vol. 22; no. 1; p. 58
• Main Authors: Cambonie, Gilles, Desage, Chloé, Thaller, Pénélope, Lemaitre, Anne, de Balanda, Karine Bertran, Combes, Clémentine, Gavotto, Arthur
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 13.05.2023; BioMed Central; BMC
• Subjects: Agreements; Anxiety; Bereavement; Care and treatment; Caregivers; Committees; Depression; Depression, Mental; Diagnosis; End-of-life decisions; Ethics; Female; Health aspects; Hospitalization; Hospitals; Humans; Infant; Infant, Newborn; Infants; Investigations; Life Sciences; Meetings; Mental depression; Mortality; Neonatal intensive care; Newborn; Newborn babies; Nurses; Palliative care; Palliative treatment; Parental grief; Parents & parenting; Parents - psychology; Patient outcomes; Perception; Perinatal Death; Prospective Studies; Psychological aspects; Psychologists; Questionnaires; Services; Social aspects; Terminal Care - psychology; France; Newborn; Mortality; Depression; Anxiety; End-of-life decisions; Parental grief; Withholding or withdrawing care
• ISSN: 1472-684X; 1472-684X
• DOI: 10.1186/s12904-023-01183-8

Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associated with subsequent risk of parental anxiety or depression. The secondary objective was to assess parents' perceptions of end-of-life care according to death context. Prospective single center observational study of all neonatal deaths in a neonatal intensive care unit over a 5-year period. Data were collected during hospitalization and from face-to-face interviews with parents 3 months after the infant's death. Anxiety and depression were assessed using Hospital Anxiety and Depression Scale (HADS) questionnaires, completed by parents 5 and 15 months after death. Of 179 deaths, 115 (64%) occurred after the WWLST decision and 64 (36%) despite maximum care. Parental satisfaction with newborn care and received support by professionals and relatives was higher in the first condition. Sixty-one percent of parents (109/179) attended the 3-month interview, with the distribution between groups very close to that of hospitalization. The completion rates of the HADS questionnaires by the parents who attended the 3-month interview were 75% (82/109) at 5 months and 65% (71/109) at 15 months. HADS scores at 5 months were consistent with anxiety in at least one parent in 73% (60/82) of cases and with depression in 50% (41/82). At 15 months, these rates were, respectively, 63% (45/71) and 28% (20/71). Risk of depression at 5 months was lower after a WWLST decision (OR 0.35 [0.14, 0.88], p = 0.02). Explicit parental agreement with the WWLST decision had an equivocal impact on the risk of anxiety at 5 months, being higher when expressed during hospitalization, but not at the 3-month interview. Context of death has a significant impact on the emotional experience of parents after neonatal loss, which underlines the importance of systematic follow-up conversations with bereaved parents.