Objective To explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide.
Methods A cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015, including all 57 level III units that offered hypothermia. Forty-one questions were included to explore how the prognosis is established, as well as timing of the decision-making process, and also how ongoing palliative care is offered.
Results The main difficulties in EoL decisions lie in the scarce time to make an early, accurate prognosis. Only 20% shared the neurological prognosis with the parents within 72 hours of life, and in only a third of the centres is the nurse present when the prognostic information is given to the family. Almost 50% do not use protocols to order the EoL process. Practically, all centres (91%) reported taking into account the wishes of the parents. However, in 30% the team does not always reach consensus on how the withdrawal process. Specialised psychological support is available in 54% of the hospitals; in more than 50%, interviews are not arranged to examine the grieving process with parents.
Conclusions There are four areas for improvement in the comprehensive, multidisciplinary approach to the EoL decision in the patient with HIE: (1) the need for EoL and interdisciplinary palliative care protocols, (2) participation of nurses in the process and improvement in the nurse–physician communication, (3) psychological support for parents involved in the EoL decisions and (4) implementation of strategies to give support during the grieving process.
- Palliative care
- end of life
- decision making
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Collaborators ESP-EHI Group:J Diez-Delgado; I Benavente-Fernández; S Lubián-López; I Tofe; A E Jeréz; J A Hurtado; J M Ceballos; M L Millán; M D Esquivel; C Ruiz; M Baca; E Tapia; M Losada; E Torres; A Pavón; P J Jiménez; F Jiménez; M P Ventura; S Rite; T González; R P Arias; P R Balliu; J M Lloreda-García; J L Alcaraz; C Tapia; A de la Morena; I Centelles; I Güemes; J Estañ; A Alberola; S Aparici; R López; J Beceiro; B García; L Martínez; E González; L Arruza; M D Blanco; M T Moral; B Arias; F Mar; J Jiménez; G Romera; A Cuñarro; Muñoz; F Cabañas; E Valverde; R Montero; J C Tejedor; C Santana; B Reyes; S Romero; A Orizaola; M Baquero; D Hernández; A Pantoja; C Vega-del-Val; L Castañón; E P Gutiérrez; M Benito; S Caserío; G Arca; M J García; M A López-Vílchez; L Castells; M Domingo; W Coroleu; H Boix; R Porta; S Martínez-Nadal; E Jiménez; E Sole; M Albújar; E M Fernández; A R Barrio; E Piñán; A Avila-Alvarez; M E Vázquez; N Balado; P A Crespo; M L Couce; A Concheiro-Guisán; I Esteban; A Lavilla; V Alzina; A Aguirre; B Loureiro; I Echániz; M D Elorza; A Euba.
Contributors The authors are responsible for the research and have participated in their concept and design, analysis and interpretation of the data, writing and proofreading of the manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.