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The Need for a Shared Understanding: Domains of Care and Composition of Team in Pediatric Palliative Care Guidelines

Rost, Michael MSc, MA; De Clercq, Eva PhD; Wangmo, Tenzin PhD; Elger, Bernice S. MD, MA

Journal of Hospice & Palliative Nursing: December 2017 - Volume 19 - Issue 6 - p 556–564
doi: 10.1097/NJH.0000000000000387
Feature Articles

Conceptual confusion is a primary barrier to providing quality palliative care. This study aimed to analyze pediatric palliative care (PPC) guidelines from a conceptual perspective to facilitate a shared understanding of palliative care in pediatrics. Five online databases were searched systematically, in addition to a Google search. Analysis focused on the language used to determine the domains of PPC and on the composition of the PPC team. Guidelines express consensus on 4 core domains: physical, psychological, social, and spiritual care. However, conceptual vagueness exists with respect to the latter 3 because terminology is used inconsistently both within and across guidelines. An inconsistent use of terminology affects the quality of PPC nursing in various ways. Therefore, a shared understanding and unambiguous language must be envisaged. Furthermore, although guidelines agree on the most prominent team members, they do not clearly indicate how these occupational groups should collaborate.

Michael Rost, MSc, MA, is research assistant, Institute for Biomedical Ethics, University of Basel, Switzerland.

Eva De Clercq, PhD, is post doc, Institute for Biomedical Ethics, University of Basel, Switzerland.

Tenzin Wangmo, PhD, is post doc, Institute for Biomedical Ethics, University of Basel, Switzerland.

Bernice S. Elger, MD, MA, is professor, Institute for Biomedical Ethics, University of Basel, Switzerland.

Address correspondence to Michael Rost, MSc, MA, Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056 Basel, Switzerland (Michael.rost@unibas.ch).

This study was supported by Swiss National Science Foundation (SNSF), National Research Programme 67 “End of Life” (grant no. 406740_139283/1).

The authors have no conflicts of interest to disclose.

© 2017 by The Hospice and Palliative Nurses Association.