End of life care in a Central-Asian state: from public indifference to accepting

Abstract

According to official records, annually 5 thousand people in Kyrgyzstan are diagnosed with cancer. Due to late diagnostics, half of them die during the first year of treatment, already in terminal stage of the disease. In such circumstances, about 2500 people are in need of palliative care in order to receive appropriate end-of-life services. Mentality of the families in Kyrgyzstan meet problems when a person in terminal stage of a certain disease needs the end of life care. According to a random research, 8 out of 10 people would prefer to take care of such patient at home. Many people in the country, particularly in rural areas, find it critically important to keep their dying relatives at home, with no access to professional palliative care, as well as profound psychological intervention. First fully functioning hospice unit was initiated by the Red Crescent Society of Kyrgyzstan (RCSK) in 2017. This is one of the first steps to bring the people to understanding what a hospice is. The first step from indifference and protest of the population to accepting and supporting the development of hospice care in Kyrgyzstan. Together with increasing awareness of the general population and medical staff on newly appearing end of life care RCSK came across with fear. Fear is lack of knowledge, as well as the lack of knowledge can be treated by providing and showing. One of the tools of familiarization of families with what is a hospice is launching the “School for relatives”, where the nurses and doctors of the hospice train on basics of home based care for palliative patients and explain the difference of home care and hospice-based care for people approaching to the end of life. The activities are aiming to increase the number of population understanding and trusting the hospice, and accepting this institution as a best alternative for taking care of a dying person in a complex approach. Main stakeholders of these steps are the Association of palliative care, Children Hospice in Bishkek and the Ministry of health of the Kyrgyz Republic. RCSK and the partners are working over optimization of the existing standards of palliative care putting them into practice and monitoring if they should be modified and how. Hospice functioning take into consideration direct involvement of the environment of a patient as a whole – the family, friends, occupation and skills. Sustainability of the action will be assured by the political will of the state to empower services provided to palliative patients through state social contracting. The model of hospice can be transferred to neighboring states as a role model after testing and modifications. RCSK has been elaborating the key messages for people in terminal stages and their families: 1- Hospice is about living. It can save appropriate quality of life for as long as possible. 2- Home is important. But there can be such situations, that can’t be helped at home. 3- Family matters. Relatives of palliative patients also need support, advice and care.

Keywords

• palliative care
• mentality
• central asia