Keywords
social support
psychological support
spiritual support
advocacy
How to Cite
Abstract
In Ukraine, the participation of civil society in the development of the Palliative and Hospice Care (PHC) system is not crucial, since professional Non-Governmental (Civil) Organizations (NGOs) do not have the resources and powers necessary for such an impact. However, the experience of other countries shows that the participation of NGOs in the creation of a PHC system, which should be among the "best practices", is mandatory. The study was conducted to identify the areas of work of Ukrainian NGOs for the provision of PHC and influence on state policy. The study was conducted using the method of system analysis and bibliosemantic method, with a search for sources by keywords in Ukrainian and English in Google, Google Scholar and PubMed. PHC consists of medical care, psychological, spiritual, social and legal support for patients. Medical care and psychological support are entrusted to the healthcare system, which should also coordinate other areas. However, the actual overload of medical workers leaves other areas of PHC in the sphere of responsibility of social services and NGOs. NGOs specializing in palliative care are mainly professional associations of doctors and nurses in palliative medicine. Some NGOs also advocate for patients’ rights, support patients and their relatives (caregivers), and provide social support. In countries with developed palliative care systems, NGOs specializing in palliative care can organize their own hospices, be coordination centers for palliative care, conduct training, conduct scientific research, and even issue licenses to doctors and nurses to work in palliative care. In many countries where euthanasia is legalized, NGOs have had a significant impact on the legalization process, studied public opinion, and exerted the necessary influence on politicians. Ukrainian scientists are developing models for organizing palliative care, in which NGOs should receive greater resources and powers to play a greater role in the further development of the national palliative care system.
Keywords: palliative and hospice care, social support, psychological support, spiritual support, advocacy.
References
Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage. 2013;45(6):1094-106. DOI: 10.1016/j.jpainsymman.2012.05.011. PMID: 23017628.
The 2015 Quality of Death Index Ranking palliative care across the world. A report. Commissioned by Lien Foundation.London-New York-Hong Kong-Geneva: Economist Intelligence Unit; 2015. 72 p. Available at: https://impact.economist.com/perspectives/health/2015-quality-death-index
Nesterenko VG, Krasnikova SO, Shevchenko AS. Media discussions about hospice and palliative care in Ukraine since the beginning of the war. Proceedings of the VI-th scientific and practical conference with international participation "Public health in Ukraine: problems and ways to solve them", dedicated to the 100-th anniversary of the department of public health and health care management of the Kharkiv National Medical University (Tomilin's readings), 2 Nov 2023. 4 p. DOI: 10.5281/zenodo.10053065.
Holovanova IA, Shevchenko AS. The issue of patient-oriented organization of palliative and hospice care in Ukraine. Experimental and Clinical Medicine. 2021;90(2):21-7. DOI: 10.35339/ekm.2021.90.2.hos.
Kotvitska AA, Kubarieva IV, Beketova MS. Educational and scientific aspects of paliative care development in Ukraine. Pharmaceutical Review. 2021;(3):64-73. DOI: 10.11603/2312-0967.2021.3.12389. [In Ukrainian].
Lekhan VM. Retrospective analysis of the construction of the national system of hospice and palliative care in Great Britain. Inter Collegas. 2024;11(1):52-6. DOI: 10.35339/ic.11.1.lvm.
Archived copy of the official website of the State Enterprise "Institute of Palliative and Hospise Medicine of the Ministry of Health of Ukraine". Wikipedia [Internet]. https://web.archive.org/web/20130110162946/http://www.palliativecare.gov.ua/node/131 [accessed 31 Dec 2025]. [In Ukrainian].
State Enterprise "Institute of Palliative and Hospice Medicine of the Ministry of Health of Ukraine". Company status: closed. OpenDataBot [Internet]. Available at: https://opendatabot.ua/c/36069507 [accessed 31 Dec 2025]. [In Ukrainian].
Our Projects. Public Organization "Ukrainian League for the Development of Palliative and Hospice Care" [Internet]. Available at: https://ligalife.com.ua/en/our-projects [accessed 31 Dec 2025].
Regional organizations. Public Organization "Ukrainian League for the Development of Palliative and Hospice Care" [Internet]. Available at: https://ligalife.com.ua/en/about-us/regional-organizations [accessed 31 Dec 2025].
Achievements and open issues of Ukraine in the field of palliative and hospice care. Public Health Center of the Ministry of Health of Ukraine, 05 Dec 2021 [Internet]. Available at: https://phc.org.ua/news/dosyagnennya-ta-vidkriti-pitannya-ukraini-u-sferi-paliativnoi-ta-khospisnoi-dopomogi-fakhivci [accessed 31 Dec 2024]. [In Ukrainian].
Nesterenko VG, Mykhnevych KG. Practical aspects of pain relief in palliative medicine. Inter Collegas. 2024;11(1):57-72. DOI: 10.35339/ic.11.1.nem.
Lekhan VM. Impact of different types of pain on organizational decisions in palliative medicine. Medicine Today and Tomorrow. 2024;93(1):47-55. DOI: 10.35339/msz.2024.93.1.lvm.
Nesterenko VG. The controllability of pain in palliative medicine as a factor in the medical and social im-pact on the patients’ quality of life at the end-of-life. Experimental and Clinical Medicine. 2024;93(1):69-86. DOI: 10.35339/ekm.2024.93.1.nes. [In Ukrainian].
Nesterenko VH, Peresypkina TV, Shevchenko OS, Sarkhadova II. Palliative and hospice care in the Kharkiv region in the first year of the war. Ukraine. Nation's Health. 2023;73(3):106-12. DOI: 10.32782/2077-6594/2023.3/18.
Herasimova N. World and domestic practice of implementing palliative care at home for the elderly. Ukraine. Labor Issues. 2013;(7):43-51. Available at: http://jnas.nbuv.gov.ua/j-pdf/Uap_2013_7_9.pdf [In Ukrainian].
Nesterenko VG, Burzyńska J. Justification of the model of optimized system of providing palliative and hospice care to the population of Ukraine. Inter Collegas. 2024;11(3):35-44. DOI: 10.35339/ic.11.3.neb.
Shevchenko AS, Brown GW. What evidence-based medicine can oppose to falsifications in science. Bull KhRIPHS. 2020;96(4):24-35 DOI: 10.5281/zenodo.5076629. [In Ukrainian].
Savka HV. State, problems and perspectives of implementation of paliative and hospice care in Ukraine. Nursing. 2019;(2):26-30. DOI: 10.11603/2411-1597.2019.2.10195. [In Ukrainian].
Nesterenko VG, Redka IV, Sukhonosov RO, Grygorov SM, Shevchenko AS, Aliieva TD. Forecasting the need for palliative and hospice care using the creeping trend method with segment smoothing. Wiad Lek. 2024;77(5):980-4. DOI: 10.36740/WLek202405116 PMID: 39008586.
Nesterenko VG, Shevchenko VV. Calculation of the national need for palliative care by the refined method of trends in the conditions of a military crisis. Eastern Ukrainian Medical Journal. 2024;12(3):711-20. DOI: 10.21272/eumj.2024;12(3):711-720.
Holovanova IA, Shevchenko AS. Determination of the main needs of palliative patients and ways of their provision in the health care system of Ukraine. Experimental and Clinical Medicine. 2021;90(3):88-94. DOI: 10.35339/ekm.2021.90.3.hos.
Nesterenko VG, Lytvynenko OYu. Readiness for dialogue regarding euthanasia of palliative patients in Ukraine. Experimental and Clinical Medicine. 2024;93(2):79-88. DOI: 10.35339/ekm.2024.93.2.nel. [In Ukrainian].
Smiianov VA. Medical assistance in dying for palliative patients in different countries of the world: lessons on euthanasia legalization. Inter Collegas. 2024;11(2):32-40. DOI: 10.35339/ic.11.2.smi.
Nesterenko VG, Shevchenko AS, Zelenska KO, Hryhorov MM. Clinical and epidemiological characteristics of disabling neurological diseases (literature review). International Neurological Journal. 2024;20(4): 176-84. DOI: 10.22141/2224-0713.20.4.2024.1079. [In Ukrainian].
Nesterenko V, Shevchenko A, Zhuravel Ya. Prevention of neurodegenerative diseases’ complications in palliative patients at home hospice: organizational principles. Proceedings of the International scientific conference "The greatest humankind achievements in healthcare and veterinary medicine" (Latvia, Riga, 7–8 Feb 2024). P. 96-9. DOI: 10.30525/978-9934-26-401-6-26. Archived DOI: 10.5281/zenodo.10840071.
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.