The role of paediatric supportive care team in the development of hospital palliative care at the University Hospital Motol

Česká verzia

Authors: Hrdličková Lucie ^1,2,3; Kleinová Kokešová Gražina ^2,3,4,5,6; Nováková Lenka ^1,2,3; Makešová Denisa ^2,7; Doušová Tereza ^3,8
Authors place of work: Klinika dětské hematologie, a onkologie, 2. lékařská fakulta, Univerzity Karlovy a FN Motol, Praha ¹; Tým dětské podpůrné péče, FN, Motol, Praha ²; Sekce dětské paliativní, medicíny České pediatrické, společnosti ČLS JEP ³; Oddělení klinické psychologie, FN Motol, Praha ⁴; Cesta domů, z. ú. ⁵; Psychosomatická klinika, Praha ⁶; Sociální oddělení, FN Motol, Praha ⁷; Pediatrická klinika, 2. lékařská, fakulta Univerzity Karlovy a FN, Motol, Praha ⁸
Published in the journal: Čes-slov Pediat 2023; 78 (1): 40-43.
Category: Comprehensive Report
doi: https://doi.org/10.55095/CSPediatrie2023/007

Summary

In past two decades, paediatric palliative care has significantly evolved worldwide, which has also contributed to the acceleration of paediatric palliative care development in the Czech Republic. There are three levels of care for patients with palliative needs - palliative approach, general and specialised palliative care. The models of specialised palliative care include the hospital palliative care teams, and the first ever palliative team focused on paediatric patients was established in 2017 at University Hospital Motol in Prague. This article presents the challenges that accompanied the palliative care team development and introduces the processes that facilitated the implementation of paediatric palliative care in the largest hospital in the Czech Republic.

Keywords:

multidisciplinary team – pediatric palliative care – care implementation

Zdroje

1. Integrating palliative care and symptom relief into paediatrics: a WHO guide for health-care planners, implementers and managers. World Health Organization. [Online]. Dostupné na: https://apps.who.int/iris/ handle/10665/274561

2. Wolfe J, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000; 342(5): 326–333.

3. Kaye EC, Friebert S, Baker JN. Early integration of palliative care for children with high-risk cancer and their families. Pediatr Blood Cancer 2016; 63(4): 593–597.

4. Loeffen EA, Tissing WJ E, et al. Individualised advance care planning in children with life-limiting conditions. Arch Dis Child 2018; 103(5): 480–485.

5. Zhukovsky DS, Herzog CE, et al. The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer. J Palliat Med 2009; 12(4): 343– 349.

6. Kaye EC, et al. Predictors of location of death for children with cancer enrolled on a palliative care service. Oncologist 2018; 23(12): 1525–1532.

7. Benini F, et al. International standards for pediatric palliative care: from IMPaCCT to GO-PpaCS. J Pain Symptom Manage 2022; 63(5): e529–e543.

8. MorrisonWE, Gauvin F, et al. Integrating palliative care into the ICU: from core competency to consultative expertise. Pediatr Crit Care Med 2018; 19(8S Suppl 2):S86–S91

9. Hui D, Bruera E. Models of palliative care delivery for patients with cancer. J Clin Oncol 2020; 38(9): 852–865.

10. Kassam AW, Skiadaresis J. Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team. Pediatr Blood Cancer 2015; 62(8): 1409–13.

11. Weaver MS, et al. Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliat Med 2016; 30(3): 212–223.

12. Verberne LM, et al. Parental experiences with a paediatric palliative care team: A qualitative study. Palliat Med 2017; 31(10): 956–963.

13. Wolfe J, et al. Easing of suffering in children with cancer at the end of life: Is care changing? J Clin Oncol 2015; 26(10): 1717–1723.

14. Fraser LK, et al. Does referral to specialist paediatric palliative care services reduce hospital admissions in oncology patients at the end of life. Br J Cancer 2013; 108(6): 1273–1279.

15. Feudtner C, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 2011; 127(6): 1094–1101.

16. Marcus KL, et al. Impact of specialized pediatric palliative care: a systematic review. J Pain Symptom Manage 2020; 59(2): 339–364.

17. Feudtner C, et al. Pediatric palliative care programs in children’s hospitals: a cross-sectional national survey. Pediatrics 2013; 132(6): 1063–1070.

18. Drake R. Palliative care for children in hospital: Essential roles. Children 2018; 5(2): 26.

19. Balvínová A, Mičková M, et al. Souběžná role sestry na dětské onkologii a v paliativním týmu: profesní a kompetenční výzvy při práci s onkologicky nemocnými dětmi. Onkologie 2022; 16(2): 71–73.

20. Benešová H, Hrdličková L, et al. Social work in pediatric palliative care. Paliativní medicína 2020; 1(1): 39–42.

21. Kokešová Kleinová G, Kocábová Z, et al. Role psychologa v dětském nemocničním paliativním týmu. Paliativní medicína 2021; 2(1): 43–48.

22. Hrdlickova L. Role lékaře v komunikaci s pacientem a jeho rodinou v kontextu dětské onkologie Jak se zapojuje lékař paliativního týmu v péči o onkologicky nemocné dítě během protinádorové léčby vedené s kurativním záměrem? Onkologie 2022; 16(2): 77–80.

23. Hrdlickova L. The impact of specialized palliative care on place of death in children with life-limiting condition: four-year experience of palliative care provision in tertiary hospital, poster. 5th Maruzza International Congress on Paediatric Palliative Care. 2022.

24. Fadul N. Supportive versus palliative care: What’s in a name? Cancer 2013; 115(9): 2013–2021.

25. De Clercq E, Rost M, et al. The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective. BMC Palliat Care 2019; 18: 55.

26. Lalloo C, Osei-Twum J, et al. Pediatric Project ECHO: knowledge and self-efficacy among interprofessional health care providers. J Pal Med 2021; 24(7): 1036–1044.