In 2010, the working group on palliative care standards was created under the support of the Soros Foundation-Kazakhstan and IPCI (International Palliative Care Initiative). The group consisted of non-governmental organisations, representatives of the Ministry of Health and external consultant Thomas Lynch. The Kazakhstani Public Health School took a leading role in the group’s work. The written standards were submitted to the Ministry of Health and it took quite a while before – after all the negotiations – they were finally approved.
Before, palliative care issues were included into different legislative acts, which significantly complicated the palliative care provision – for example, 75% of healthcare workers had no idea about palliative care. Now we have a unified document which covers all aspects of palliative care provision, and which is obligatory for all stakeholders to take into account. The most important issues are:
- palliative care providers have been listed, and includes not only healthcare settings, but also non-governmental organisations. Here we can see the new trend – palliative care stopped being just a medical issue, now it is more socially-oriented.
- there is a range of different forms of palliative care services, which include not only hospices, but also outpatient care, mobile brigades and multidisciplinary teams. It means that now, even if patients choose to stay at home during their last stage of disease, they won’t be left without support
- the standards include such types of services as bereavement support (this is the first time this has been mentioned in our legislation), highlight the role of volunteers and families in palliative care provision, and oblige palliative care providers to provide educational, legal, social, and psychological support to the patients and their families, as well as symptom control and pain relief.
The standards also pay special attention to palliative care for children. In an individual chapter, the psychological needs of a terminally ill child are mentioned separately, and their family, including brothers and sisters are also named as beneficiaries of palliative care services. The chapter is based on a ‘right of the child’ – preserving his or her dignity, taking into account special emotional, social and psychological needs of a dying child.
Of course its very naïve to think that palliative care provision in our country will change dramatically just by the fact that palliative care standards were approved. The biggest challenges – on an implementation level – are still lying ahead. But now we feel more confident about palliative care development in our country and we are happy that more and more stakeholders are appearing in the palliative care field. Thus, in 2013, the Kazakhstan Palliative Care Association was created, which is now taking a leading role in palliative care development in the country.
The Association consists of NGO representatives, medical schools, and hospital cancer units and will concentrate its efforts on further promotion of the palliative care standards.
Among the biggest challenges – which unfortunately the palliative care standards didn’t mention – is the provision of opioid medications for all patients in need. So far the provision of opioid analgesics in our country is insufficient, which requires a lot of further advocacy work from all stakeholders. We hope that in future these issues will be additionally addressed in standards of palliative care provision.
Ainur Shakenova graduated with a bachelor’s degree in law from Turan University (Kazakhstan, 2002) and with Master’s degree in law from Saint Louis University (USA, 2012). She has worked as a Law Reform Program Coordinator for the Soros Foundation-Kazakhstan since 2007 with a one year gap as an Edmund Muskie Fellowship Program fellow (2011-12), and has supervised law, health and social inclusion projects. Working as the Palliative Care Development Coordinator, she initiated her own research on legal and social barriers to accessing opiates for terminally ill patients in Kazakhstan. Currently, Ainur is a member of the Working Group on changing the access to opiates legislation in Kazakhstan. She is also a lecturer at Almaty State Institute on Advanced Training for Physicians on the issues of healthcare law, patients’ rights and bioethics.