PALLIATIVE CARE FOR CHILDREN: GLOBAL TRENDS AND DEVELOPMENT PROSPECTS IN THE KYRGYZ REPUBLIC
DOI:
https://doi.org/10.54890/1694-8882-2025-1-18Abstract
Currently, a new field of medicine – palliative care – is rapidly developing worldwide. The World Health Organization recommends that governments of all countries ensure palliative care is accessible to every child with a severe, incurable illness. The aim of this article is to propose directions for the development of pediatric palliative care in the Kyrgyz Republic based on a review of existing global practices and the current situation in the country. Materials and Methods. Literature review of scientific publications for the last 30 years in PubMed, as well as on the websites of leading international and national organisations (World Health Organization, European Association for Palliative Care, etc.), regulatory framework of the Kyrgyz Republic was conducted. It has been shown that there is no national-level system for providing pediatric palliative care in the Kyrgyz Republic. However, all the necessary conditions for its establishment and rapid development exist. Prospective directions for ensuring the right of terminally ill children and their families to access pediatric palliative care at the national level have been proposed. These include the development of a long-term state policy for the phased introduction of inpatient and outpatient services, the creation of a continuous medical education system for healthcare workers, and the establishment of a registry of children in need of palliative care to assess their needs and facilitate financial and economic planning for comprehensive multidisciplinary support.
Keywords:
palliative care for children, pediatric palliative careReferences
1. World Health Organization. Palliative Care [Internet]. Available from: https://www.who.int/health-topics/palliative-care
2. World Health Assembly. Resolution WHA67.19. Strengthening of Palliative Care as a Component of Comprehensive Care Throughout the Life Course. 2014. Available from: https://bookofauthorities.info/documents/2014/resolution-wha67-19-strengthening-of-palliative-care-as-a-component-of-comprehensive-care-throughout-the-life-course/
3. United Nations Human Rights Committee. Report of the Special Rapporteur on Torture, A/IYAC/10/44. January 14, 2009. Available from: https://www.ohchr.org/ en/press-releases/2009/10/committee-rights-child-examines-report-chad
4. Kübler-Ross E. On Death and Dying. New York: Macmillan; 1969. 286 p.
5. Bluebond-Langner M. The Private Worlds of Dying Children. Princeton (NJ): Princeton University Press; 1978. 302 p.
6. World Health Organization. Cancer Pain Relief and Palliative Care in Children. Geneva: WHO; 1998. Available from: https://iris.who.int/handle/10665/42001
7. Jassal S. Basic Symptom Control in Paediatric Palliative Care. Rainbow’s Children’s Hospice; 1999.
8. World Health Organization. National Cancer Control Programmes. Policies and Managerial Guidelines. 2nd ed. Geneva: WHO; 2002. 180 p. Available from: https://iris.who.int/handle/10665/42494
9. IMPaCCT. Standards for Paediatric Palliative Care in Europe. Eur J Palliat Care. 2007;14(3):2-7.
10. Ладбрух Л., Пейн Ш., Совет Директоров ЕАПП. Белая книга: стандарты и нормы хосписной и паллиативной помощи в Европе. В кн. Паллиативная помощь взрослым и детям: организация и профессиональное обучение. Сборник документов ВОЗ и ЕАПП. М.: Р.Валент; 2014:23-82.
11. World Health Organization. WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses. Geneva: WHO; 2012. PMID: 23720867
12. Гармонди К., Ларкин Ф., Пейн Ш. Белая книга: Основные компетенции, необходимые для оказания паллиативной помощи. В кн.: Паллиативная помощь взрослым и детям: организация и профессиональное обучение. Сборник документов ВОЗ и ЕАПП. М.: Р.Валент; 2014:87-115.
13. Элснер Ф., Центено К., Чето Ж. Рекомендации по разработке образовательных программ в паллиативной медицине в Европейских медицинских ВУЗах. В кн.: Паллиативная помощь взрослым и детям: организация и профессиональное обучение. Сборник документов ВОЗ и ЕАПП. М.: Р.Валент; 2014:119-141.
14. World Health Organization. Strengthening Palliative Care as a Component of Comprehensive Care. WHO Secretariat Report. Geneva: WHO; 2014. 5 p.Available from: https://apps.who.int/gb/ebwha/pdf_files/wha67/a67_r19-en.pdf
15. World Health Organization. Integrating Palliative Care and Symptom Relief into Paediatrics: A WHO Guide for Health-Care Planners, Implementers, and Managers. Geneva: WHO; 2018. 87 p. Available from: https://iris.who.int/bitstream/handle/10665/274561/9789241514453-eng.pdf?sequence=1
16. Arias-Casais N, Garralda E, Rhee J, de Lima L, Clark D, Hasselaar J, et al. EAPC Atlas of Palliative Care in Europe 2019. Vilvoorde: EAPC Press; 2019. 197 p. Available from: https://www.hospiz.at/wordpress/wp-content/uploads/2019/07/EAPC-Atlas-2019-final-web.pdf
17. World Health Organization. Guidelines on the Management of Chronic Pain in Children. Geneva: WHO; 2020. 40 p. Available from: https://iris.who.int/ bitstream/handle/10665/337999/9789240017870-eng.pdf?sequence=1
18. Worldwide Hospice Palliative Care Alliance. Global Atlas of Palliative Care 2nd Edition. 2020. 120 p. Available from: https://www.palliativecare.in/wpcontent/uploads/2020/10/Global-Atlas-2nd-Edition-2020.pdf
19. EAPC Children and Young People’s Reference Group. European Charter on Palliative Care for Children and Young People [Internet]. September 2022. Available from: https://icpcn.org/wpcontent/uploads/2023/01/FINAL-EAPC-CYP-Charter-1.pdf
20. Benini F, Papadatou D, Bernadá M, Craig F, De Zen L, Downing J, et al. International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS. J Pain Symptom Manage. 2022;63(5):e529-e543. https://doi.org/10.1016/j.jpainsymman.2021.12.031
21. Goldman A, Hain R, Liben S, editors. Oxford Textbook of Palliative Care for Children. Oxford: Oxford University Press; 2012. 500 p.
22. Marston J, Boucher S, Downing J. International Children's Palliative Care Network: A Global Action Network for Children with Life-Limiting Conditions. J Pain Symptom Manage. 2018;55(2 Suppl):S104-S111. https://doi.org/10.1016/j.jpainsymman.2017.03.024
23. WHO Expert Committee on Cancer Pain Relief and Active Supportive Care. Cancer Pain Relief and Palliative Care: Report of a WHO Expert Committee [Internet]. Geneva: WHO; 1990. 76 p. Available from: https://iris.who.int/handle/10665/39524
24. Hanks G, Cherny N, Christakis N, Fallon M, Kaasa S, Portenoy R, editors. Oxford Textbook of Palliative Medicine. 4th ed. Oxford: Oxford University Press; 2010:9-16.
25. Carlos C, Bolognesi D, Biasco G. Comparative Analysis of Specialization in Palliative Medicine Processes within the WHO European Union. J Pain Symptom Manage. 2015;49(5):861-870. https://doi.org/10.1016/j.jpainsymman.2014.10.019
26. Shamieh O, Richardson K, Abdel-Razeq H, Mansour A, Payne S. Gaining Palliative Medicine Subspecialty Recognition and Fellowship Accreditation in Jordan. J Pain Symptom Manage. 2020;60(5):1003-1011. https://doi.org/10.1016/j.jpainsymman.2020.05.016
27. Arias-Casais N, Garralda E, Pons JP, Marston J, Chambers L, Downing J, et al. Mapping Pediatric Palliative Care Development in the WHO-European Region: Children Living in Low-to-Middle-Income Countries Are Less Likely to Access It. J Pain Symptom Manage. 2020;60(4):746-753. https://doi.org/10.1016/j.jpainsymman. 2020.04.028
28. Knapp C, Woodworth L, Wright M, Downing J, Drake R, Fowler-Kerry S, et al. Pediatric Palliative Care Provision Around the World: A Systematic Review. Pediatr Blood Cancer. 2011;57:361-368. https://doi.org/10.1002/pbc.23100
29. Clelland D, van Steijn D, Macdonald ME, Connor S, Centeno C, Clark D. Global development of children's palliative care: An international survey of in-nation expert perceptions in 2017. Wellcome Open Res. 2020;5:99. https://doi.org/10.12688/wellcomeopenres.15815.3
30. Connor S, Downing J, Marston J. Estimating the Global Need for Palliative Care for Children: A Cross-Sectional Analysis. J Pain Symptom Manage. 2017;53(2): 171-177. https://doi.org/10.1016/j.jpainsymman.2016.08.020
31. Fraser L, Deborah G, Stuart J, Norman P, Parslow R. Estimating the Current and Future Prevalence of Life-Limiting Conditions in Children in England. Palliat Med. 2021;35(9):1641-1651. https://doi.org/10.1177/0269216320975308
32. Савва Н.Н., ред. Паллиативная помощь детям в России: потребность, состояние, концепция развития. Москва; 2015. 100 с.