Significance. Improving quality and availability of palliative care for children with severe refractory diseases is one of the main objectives of the federal and reginal authorities. The efforts are focused on improving quality of patients’ life, increasing satisfaction of patients (their legal representatives) and families with availability of palliative care, that relieves suffering of patients and reduces symptoms of depression. Purpose of the study. To analyze modern forms and methods of palliative care delivery to children with severe refractory diseases. Material and methods. The authors have conducted a content analysis of scientific publications on organization of palliative care delivery to children with severe refractory diseases. A total of 153 publications were analyzed, including 141 foreign publications for the period from 1998 to the second quarter of 2020. A total of 44 publications have been selected for the analytical review including 28 publications from the international Scopus database, 12 – from the Russian scientific citation index database, including 7 publications from the list of VAK journals (Higher Attestation Commission Journals), and 4 - materials of international medical organizations (WHO, WHA, AHA, European Council). Results. Children with severe refractory diseases need specialized medical, psychological and social assistance. Palliative care includes active and comprehensive support for physical, psychological, social and spiritual well-being of these children, relieving their suffering, from diagnosis to outcome, reducing symptoms of depression in their families, ensuring the best quality of life. More than 21 million children worldwide require palliative care every year, ranging from 20 to 120 per 10,000 children around the world. However, palliative care is often discussed in the late stages of the disease, not always resulting in its early initiation, only little more than half the patients in need receive palliative care, there are differences in tools for assessing care results. It is necessary to early initiate palliative care, increase volumes of its provision, increase the number of specialists and institutions involved in palliative care delivery, as well as implement a comprehensive balanced assessment of care results.

The Resolution on Palliative Care (PC) adopted by the World Health Assembly in 2014 implies PC integration into healthcare at all levels. In the Russian Federation, PC management and improvement are regulated by territorial health development programs. Objective. To analyze expert opinions on the quality of PC in various regions of the Russian Federation to optimize pediatric PC. Materials and methods. This prospective cohort study was conducted in 80 regions of the Russian Federation in October–December 2020. We interviewed 276 chief consultants, top healthcare executives, heads of healthcare institutions, pediatric departments, neonatology departments, and gynecological departments. Results. Respondents reported high quality of PC and equipment in healthcare institutions. However, they also marked limited territorial accessibility and volume of PC. They believe that PC in Russia requires better funding and expansion of home care, medical care in day hospitals and regular hospitals, and improvement of legal protection of patients. Conclusion. PC in the Russian Federation is one of the top priorities in healthcare. Several regulatory documents (including orders No 345n/372n and No 348n, resolution No 813, orders for the Moscow Region No 4-r and No 87-r) have been implemented. However, organizational problems still exist in some regions, which requires the improvement of the regulatory framework. Key words: pediatric palliative care, children, hospice and palliative care, medical and organizational measures, quality of life, suffering alleviation