Palliative medical care for children at the federal and regional levels: analysis of expert opinions and new challenges to the healthcare system

Abstract

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