In the territory of the former Soviet Union the idea of physical and emotional support for terminally ill children originated in the 1990s but was only put into practice in Belarus. In 1994 the Belarusian Children`s Hospice opened in Minsk as a non-governmental organization . At first all that was provided was hospice care at home but these days the Belarusian children’s hospice has an inpatient department with four beds and the work is carried out in eleven different programmes including:
- Palliative Care at Home
- Day Centre
- Mobile Hospice (our nurses visit children under the hospice care)
- Respite Care Programme
- Volunteers’ Programme
- Parents’ Club
- Bereavement Programme
- Siblings Programme
- Educational Programme
Our programme extends to Gomel where today the hospice provides care for 100 children in Minsk and 50 people in the region per year. Apart from the Belarusian Children’s Hospice there are five other hospices in Belarus providing home care.
The government of Belarus has begun to demonstrate an interest in palliative care services and new guidelines have been released by the Ministry of Health which determines the system for delivering palliative care. In 2012 the position of a freelance specialist in palliative care was introduced in the Ministry of Health. At present this position is held by the Medical Director of BCH. At present BCH, under the auspices of the Ministry of Health, is constructing a new hospice which will be known as ‘The Republican Centre for Children’s Palliative Care’.
Reaching out to other countries
BCH has a close cooperative relationship with Latvia. In 1996 they established a home care palliative care department at the Children’s Hospital in Riga. Palliative care in Latvia is carried out by a multidisciplinary working group, including physicians, nurses, and social workers. They focus predominantly on home care services. There are no known children’s hospice programmes in either Lithuania or Estonia although they work intensively in adult palliative care services.
Developments in Russia
Russia has been making an effort to implement the concept of palliative care for children for many years. While there are numerous palliative care organisations they still struggle to move forward with new projects. For instance, the first hospice in Moscow was registered in 1995 but full-time staff members have not been employed as yet. The core aim of this hospice is to render social rather than physical care. The widespread need for children’s palliative care in Moscow has led to the development of two functioning mobile palliative care teams: Marfo-Mariinsky Convent and the Children’s Palliative Care Development Fund, both NGOs. There is one more palliative care department at Children’s Hospital in Moscow, which mostly focuses on treatment and rehabilitation. The Children’s Hospital in Moscow is planning to establish a Palliative Care Centre for children at the end of life where palliative care services will be provided to 100 children. In the 1990s a children’s hospice in St. Petersburg was opened and no long ago they reconstructed the building. Consequently they have 27 beds, 2 of which are for children with lung ventilators.
Other regions of the Russian Federation which have begun providing children’s palliative care include a ago a children’s hospice founded in the Republic of Koma, which is in the north of the Russian Federation. One more mobile hospice with 2 beds was formally constituted a year ago in the Republic of Tatarstan, approximately 800 km east of Moscow.
Despite numerous palliative care organizations in the Ukraine there are no children’s hospices at all. However, a NGO named ‘CRAB’ is in the process of developing a children’s hospice and they are working out appropriate guidelines in order to do so. In Moldova children’s palliative care teams are working under the auspices of the adult hospices.
Developments at ‘full throttle’ in Tajikistan
A country that is at ‘full throttle’ for palliative care is Tajikistan. In this country there are many initiatives to open a children’s hospice as children make up 47% of the population. Thanks to the support of the Open Society Foundation’s International Palliative Care Initiative they are fully involved in developing palliative care services. Currently the Ministry of Health is discussing laws on palliative care in Tajikistan.
The problems that different countries cope with include an abundance of information to be found on the Internet but which is not always checked for accuracy; a lack of children’s palliative care specialists with sufficient work experience and a widespread lack of knowledge and understanding of children’s palliative care.
While there are many models for the rendering of children’s palliative care services in the former Soviet Union countries it is important that every country ensures they choose and adjust the correct model in order to best meet their needs.