Open Access Highly Accessed Research article

The model of palliative care in the perinatal setting: a review of the literature

Albert Balaguer12*, Ana Martín-Ancel3, Darío Ortigoza-Escobar3, Joaquín Escribano4 and Josep Argemi2

Author Affiliations

1 Department of Pediatrics, Hospital General de Catalunya, Universitat Internacional de Catalunya, Josep Trueta, s/n, 08195 Sant Cugat del Vallès (Barcelona), Spain

2 Centre de Recerca i Estudis Bioètics. Institut d'Estudis Superiors de Bioètica. Universitat Internacional de Catalunya, Barcelona, Spain

3 Neonatal Unit, Hospital Universitari Sant Joan de Déu, Barcelona, Spain

4 Department of Paediatrics, Hospital Universitari Sant Joan de Reus, Universitat Rovira i Virgili, Reus (Tarragona), Spain

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BMC Pediatrics 2012, 12:25  doi:10.1186/1471-2431-12-25

Published: 12 March 2012

Abstract

Background

The notion of Palliative Care (PC) in neonatal and perinatal medicine has largely developed in recent decades. Our aim was to systematically review the literature on this topic, summarise the evolution of care and, based on the available data, suggest a current standard for this type of care.

Methods

Data sources included Medline, the Cochrane Library, CINAHL, and the bibliographies of the papers retrieved. Articles focusing on neonatal/perinatal hospices or PC were included. A qualitative analysis of the content was performed, and data on the lead author, country, year, type of article or design, and direct and indirect subjects were obtained.

Results

Among the 1558 articles retrieved, we did not find a single quantitative empirical study. To study the evolution of the model of care, we ultimately included 101 studies, most of which were from the USA. Fifty of these were comments/reflections, and only 30 were classifiable as clinical studies (half of these were case reports). The analysis revealed a gradual conceptual evolution of the model, which includes the notions of family-centered care, comprehensive care (including bereavement) and early and integrative care (also including the antenatal period). A subset of 27 articles that made special mention of antenatal aspects showed a similar distribution. In this subset, the results of the four descriptive clinical studies showed that, in the context of specific programmes, a significant number of couples (between 37 and 87%) opted for PC and to continue with the pregnancy when the foetus has been diagnosed with a lethal illness.

Conclusions

Despite the interest that PC has aroused in perinatal medicine, there are no evidence-based empirical studies to indicate the best model of care for this clinical setting. The very notion of PC has evolved to encompass perinatal PC, which includes, among other things, the idea of comprehensive care, and early and integrative care initiated antenatally.