Plan for palliative care for youngsters
Moscow 5 September 2014
A draft plan for the development of palliative care for children and teenagers has been produced in Russia
The draft plan covering the years 2015-2019 was presented at a meeting of the Public Council of the Ministry of Health for the Russian Federation.
The authors of the plan are specialists from leading Russian institutions that deal with palliative care for youngsters. The founder and president of the foundation Palliative Care for Children, Yulia Chechet, emphasised that the authors view the plan as forming the basis for developing legal provisions regulating the national system of palliative paediatrics and assuring access to palliative services for all youngsters with untreatable diseases regardless of age, type of illness, region of residence or other circumstances. The authors of the plan observed that the number of children in Russia with various serious illnesses that are incurable at the present stage in the development of medicine is growing. An official register of such incurable patients in Russia does not yet exist. The specialists think that no less than 287,000 Russians aged up to18 years suffer from severe, incurable illnesses. Each of them needs palliative care, which is exceptionally important for preventing and/or easing physical, emotional and spiritual suffering and for offering the best possible quality of life given the particular diagnosis involved.
However, currently youngsters suffering from severe incurable illnesses as well as those close to them (parents, brothers and sisters) do not have guaranteed access to comprehensive palliative care and as a result their right to a worthwhile life is prejudiced. In particular the specialists noted the following negative factors: a shortage of qualified personnel, the lack of special training programmes for palliative paediatrics and pain management as well as a whole range of treatments recommended by the World Health Organisation (WHO) and various kinds of palliative medical support for youngsters.
The authors of the plan propose that the following steps be put in hand to protect the interests of severely ill youngsters and their right to a decent life.
First, legal standards must be put in place to define and regulate the provision of palliative support for youngsters and in particular to bring the national legislation into line with the provisions of the Convention on the Rights of the Child. A national procedure for providing palliative care to youngsters should be introduced, and clinical recommendations and protocols for ensuring a standard approach worked up.
A comprehensive system of palliative care for youngsters means putting in place arrangements at many levels of government for palliative paediatrics of both general and specialised kinds in close cooperation with the ministries of labour, social welfare and education and NGOs that are ready to fulfil government commissions for the provision of care. Furthermore, there should be domiciliary, peripatetic and hospital services available, special professional training programmes at both basic and advanced levels for doctors, paramedics, psychologists and social workers, and a compulsory national standard should be adopted.
The authors also drew attention to the need to promote a humane attitude towards children with disabilities or incurable illnesses and their families, to give parents the right to have respite facilities and to provide psycho-social support for members of the family of the sick youngster.
Material and technical support should include introducing up to date medicines in conformity with the latest recommendations of the WHO for dealing with youngsters whose condition is painful; registration of non-invasive kinds of short acting morphine in both tablet and liquid form produced domestically; and provision of necessary equipment and supplies both at home and in medical organisations where palliative care is being provided.
The plan’s authors stress that palliative care for youngsters should be financed from the government’s budget. It is this that would ensure the steady development of a new direction in medicine and access to palliative care for youngsters regardless of their specific illness.
Author: Yulia Vyatkina