Dr Olga Usenko, Russian palliative care professional affiliated with the Eastern and Central Europe Palliative Care Task Force and currently Clinical Documentation Specialist, Florida Hospitals, USA, gives her reaction to winning the European Journal of Palliative Care (EJPC) Palliative Care Policy Development Award 2014.
It is a great honour for me to have received the EJPC Policy Development Award.1 I consider it a recognition of the hard work of our group of dedicated professionals: physicians, nurses, people working for charities, journalists and all those who fight for hospice and palliative care and adequate pain management in the Russian Federation. This Award is particularly important at a time of decreasing democracy in our country.
In the early 1990s,when civil and political freedoms first appeared in Russia, people started discussing the deficiencies in care provision for terminally ill patients. Colleagues from the British-Russian Hospice Society came to teach doctors and nurses about the philosophy and basic principles of modern palliative care. Further training was offered through the Open Society Institute, and there were opportunities to visit other countries. The first hospices were created in Saint Petersburg, Kemerovo and Samara. As the palliative care movement gained strength, further units opened in Moscow, Ulyanovsk, Tula, Pskov, Novokuznetsk, Prokopyevsk, Nizhniy Novgorod, and so on.
But then, in the course of the past 20 years, the gradual erosion of democracy and constant healthcare ‘reforms’ have reduced the funding, time, education and political attention needed to improve palliative care in Russia. Today, many NGOs have simply stopped working in the Russian Federation because of the dramatic changes in the political arena. The new law on narcotic drugs and psychotropic substances has made things even more difficult, as it severely restricts the access to opioids.
However, the spirit of democracy is alive. There have been intense efforts to depict a truthful picture of the current state of palliative care provision in newspapers and magazines. There have been campaigns in support of the palliative care movement, with letters written to the Russian president and prime minister, the State Duma and the Ministry of Health. Healthcare professionals have begun to understand and accept the methods of advocacy to protect the rights of patients. The tragic suicide of Admiral Vyacheslav Apanasenko, a terminally ill cancer patient who suffered from unrelieved pain,2 and the criminal prosecution of Dr Alevtina
Khorinyak, who prescribed tramadol to a terminally ill cancer patient,3 have raised awareness of the issues around pain management, not only in Russia but also worldwide.
The invaluable and timely support of the European Association for Palliative Care has contributed to our efforts to persuade the Russian government to maintain hospices as palliative care institutions. Such support will be crucial to help us move towards to a time when all incurable patients in Russia will receive adequate end-of-life care and be able to die in peace and dignity. So, from the hearts of the Russian people, thank you!
Read more about palliative care in Russia in an interview with Olga Usenko published by the European Journal of Palliative Care on its website.