Paediatric palliative care: Aligning guidelines and medical practice

Abstract

Background/Objectives: Due to advances in the world of medicine, the number of children with life-limiting and life-threatening illnesses has increased steadily. In response to these changes within paediatrics, various guidelines have been published to direct the development and implementation of paediatric palliative care (PPC). Although the concurrent administration of curative and palliative care is the recommended approach, timely referral of paediatric patients remains problematic. The aim of the literature review was to identify studies on PPC guidelines in order to identify (1) barriers to their adherence and (2) recommendations for their adequate implementation. Design/Methods: A systematic literature review was completed by searching the following online databases (between 1960 and 2015): Scopus, PubMed, PsycInfo, Web of Science, CINAHL and LexNexis. No restriction was placed on the type of methodology. Results: Commonly reported barriers to PPC within the clinical practice are: cure-oriented culture, lack of training, inadequate communication skills of healthcare staff, limited financial resources, time pressure and prognostic uncertainty. More recent articles also address the problem of definitional clarity of PPC and hospice/terminal care as a major obstacle to proper implementation of PPC guidelines. Common cited recommendations include: education of healthcare staff and formation of a multidisciplinary PC team. Only a few articles focus on shortcomings in the guidelines, such as conceptual confusion, lack of clear referral models, and guidance on how to establish a multidisciplinary team. Conclusion: The proper implementation of palliative care for paediatric patients requires a critical assessment of both research guidelines and medical practice. More empirical research is needed on the functioning of multidisciplinary research teams, on the benefits of early integration of PPC and on families’ and physicians’ perception of PPC.