Project for palliative care for children
In Russia’s Ministry of Health and Social Development a meeting was held on the management of palliative care for children, with the participation of representatives of affiliated medical research institutes and heads of departments for palliative care of children from Izhevsk and Moscow and the children’s hospice in St Petersburg. This topic should not be left outside the Ministry’s purview, according to Olga Chumakova from the Ministry. Support for terminally ill children should not be solely the responsibility of the parents; doctors, the state, NGOs and socially responsible business should also play a role. The meeting heard the preliminary results of a survey conducted by the ministry in a number of republics and regions of Russia to assess the needs for palliative care.
In addition the survey helped to collect information on how such care is managed or planned at the regional level. There are open wards for paediatric palliative care in hospitals in Khakassia, Sakha, Astrakhan, Kostroma; children’s hospices are being set up in St Petersburg, Moscow, Krasnodar; some beds are set aside in children’s wards in hospitals in Kaluga and Kemerovo. Participants thought that the need for palliative care was underestimated. Specific criteria should be established to assess which children need such care, and also to assess how much help they need. Norms and standards of palliative care and the training needs of specialists should be agreed at federal level. The first step towards this has been done: the ministry is working on a draft strategy for palliative care for children. It will define the type of institutions which will provide such care, a range of indicators of palliative support, material and equipment standards for wards, staffing requirements, etc. Specialists already involved in palliative care and experts from medical research institutes will be invited to take part in the project.