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Aligning guidelines and medical practice: Literature review on pediatric palliative care guidelines

  • Eva De Clercq (a1), Michael Rost (a1), Nadia Pacurari (a1), Bernice S. Elger (a1) and Tenzin Wangmo (a1)...

Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines.


To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies.


Concerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams.

Significance of results:

Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.

Corresponding author
Address correspondence and reprint requests to Eva De Clercq, Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, CH-4056 Basel, Switzerland. E-Mail:
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