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Perceived role in end-of-life decision making in the NICU affects long-term parental grief response
  1. Laurence Caeymaex1,2,
  2. Catherine Jousselme3,4,
  3. Caroline Vasilescu5,
  4. Claude Danan6,
  5. Bruno Falissard4,
  6. Marie-Michèle Bourrat7,
  7. Micheline Garel8,
  8. Mario Speranza9,4
  1. 1NICU, Centre Hospitalier Intercommunal de Créteil, Créteil, France
  2. 2EA1610 Laboratoire de Recherche en Ethique, Etudes sur les Sciences et les Techniques, Univ Paris-Sud and Univ Paris Diderot, Paris, France
  3. 3Department of Child and Adolescent Psychiatry, Centre Hospitalier Universitaire de Gentilly, Fondation Vallée, Gentilly, France
  4. 4Univ Paris-Sud and Univ Paris Descartes, UMR-S0669, INSERM U669, Paris, France
  5. 5NICU, Centre Hospitalier Universitaire Antoine Beclère (AP-HP), Clamart, France
  6. 6NICU, Centre Hospitalier Intercommunal de Créteil, Créteil, France
  7. 7Centre de la mère et de l’enfant, Service Hospitalier Universitaire de Limoges, Limoges, France
  8. 8Epidemiological Research Unit on Perinatal Health and Women's and Children's Health, Batiment Recherche, Hopital Tenon, INSERM UMR S953, Paris, France
  9. 9Centre Hospitalier de Versailles, Service de Pédopsychiatrie, Le Chesnay, France
  1. Correspondence to Laurence Caeymaex, NICU, Centre Hospitalier Intercommunal de Creteil, 40 avenue de Verdun, Creteil 94010, France; laurencecmx{at}


Background Shared decision making (DM) is increasingly advocated as the most appropriate model to support parents confronted with end-of-life (EoL) decisions for a child in the neonatal intensive care unit (NICU). However, few studies have explored its impact on their long-term grief.

Objectives The aim of this study was to investigate whether parental perception of the type of involvement in the EoL decision-making process (EoL DMP) for their child in the NICU is related to their long-term grief outcome.

Methods A retrospective study with mixed methods. The study included parents whose child died from 2002 through 2005 in one of four NICUs in different areas in France, with interviews of 78 individual parents of 53 children, 2.7±0.6 years after the child's death. Parental perception of the type of involvement in the EoL DMP was determined by qualitative analysis of face-to-face interviews and classified as follows: shared, medical, informed parental and no decision. Grief reactions were assessed with the Texas Revised Inventory of Grief (TRIG-F).

Results Current grief scores differed significantly according to the perceived type of EoL DM. Shared DM was associated with lower TRIG-F scores (less grief) than were the other types of EoL DM (F=7.95; p=0.05). The baby's perceived suffering was also associated with higher grief scores (F=6.51, p=0.01).

Conclusions In decisions to forego life-sustaining treatment in the NICU, the perception of a shared decision is associated in the long term with lower grief scores than perceptions of the other types of DM.

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  • Funding This work was funded by a grant from a national PHRC (Programme Hospitalier de Recherche Clinique 2006, N° AOM06058) and a grant from the Fondation de France.

  • Competing interests None.

  • Patient consent Obtained.

  • Ethics approval The study was approved by the Medical Ethics Committee of the Intercommunal Hospital of Creteil, France.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement All the data from the present research are available under request from the main investigator (Laurence Caeymaex). This includes the supplementary data concerning the subjects not included in the study.

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