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Pediatric palliative care


Authors: Mahulena Mojžíšová
Authors‘ workplace: Domácí hospic Cesta domů, z. ú ;  Dětské oddělení, Nemocnice Hořovice, a. s.
Published in: Čas. Lék. čes. 2018; 157: 37-40
Category: Review Article

„Ale co se se mnou stane, až umřu? Co se stane s babičkou?“…. „Babička bude dál žít v nás a možná bude dále žít jinak a jinde, ale už ji asi opravdu neuvidíme. Určitě ne tak, jak ji vidíme teď,“ odpovídala trpělivě maminka. Tušila ty malé skřety v Emilčině hlavě a dodala: „Jeden chytrý muž jednou řekl, že smrti se bát nemusíme, protože až přijde smrt, už tu nebudeme, a dokud žijeme, není tu smrt“.
(J. B. L. Knox: Je smrt jako duha?)

Overview

Based on the definition by the WHO from 1998, palliative care for children is the active, total care of the child’s body, mind and spirit, and involves giving care to the family. It begins when the illness is diagnosed and continues regardless of whether a child receives treatment directed at the disease. The World Health Organization (WHO) definition of pediatric palliative care was adopted by IMPaCCT (International Meeting for Palliative Care in Children, Trento) and became the key point of document, which defines and determines standards for care of children with life-limiting and life-threatening disease and recommends that these standards should be implemented in all European countries. Since 2015, the development of child palliative care in the Czech Republic is systematically promoted by the task force on palliative care for children of the Czech Society of Palliative Medicine.

Key words:
pediatric palliative care, life-limited disease, life-threatening disease, standards, family, complex care


Sources

1. World Health Organization. Cancer pain relief and palliative care in children. WHO, Geneva, 1998.

2. Feudtner C, Kang TI, Hexem KR et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 2011; 127: 1094–1101.

3. Craig F, Abu-Saad HH, Benini F et al. IMPaCCT: standards for paediatric palliative care in Europe. Eur J Palliat Care 2007; 14(3): 109–114.

4. Chambers L, Dodd W, McCulloch R et al. Guide to the Development of Children’s Palliative Care Services (3rd ed.). Association for Children’s Palliative Care (ACT), 2009. Dostupné na: www.togetherforshortlives.org.uk/assets/0001/1649/ACT_Guide_to_Developing_Services.pdf

5. Ratislavová K. Perinatální paliativní péče. Grada, Praha, 2016.

6. Fraser LK, Miller M, Hain R et al. Rising national prevalence of life-limiting conditions in children in England. Pediatrics 2012; 129: e923–e929.

7. Hrdličková L, Závadová I, Mojžíšová M et al. The need of pediatric end-of-life care in the Czech Republic. 3rd Congress on Pediatric Palliative Care – A Global Gathering. Řím, 16.–19. 11. 2016.

8. Amery J. A Really Practical handbook of Children’s Palliative Care. ProCestu, Praha, 2016.

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