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 The EJPC is pleased to announce that the winner of the 2014 EJPC Palliative Care Policy Development Award is Dr Olga Usenko, MD, MPH.
Dr Usenko was revealed as the winner of the inaugural EJPC Award on Saturday 7 June 2014 at the 8th EAPC World Research Congress in Lleida.
A Russian palliative care advocate, Dr Usenko, currently Clinical Documentation Specialist at Florida Hospitals in the USA, is recognised for her relentless efforts to develop palliative care in her home country. She was selected for the impact of her work on the quality of care provided to dying patients in Russia. The panel was struck by her leadership, charisma, devotion to patient care and selflessness.
Below is an interview with Dr Usenko, where she describes the current palliative care landscape in Russia and the efforts of a group of dedicated palliative care pioneers to improve it
How do you feel about winning the EJPC Palliative Care Policy Development Award?
It is a great honour for me to receive the Award. I consider it as recognition, not only of my personal contribution to the development of palliative care in the Russian Federation, but also of the persistent and dedicated work of my colleagues – Russian and foreign doctors, nurses, journalists and other like-minded, progressive people. Inspired by the Award, we will continue to fight for patients’ rights, and for compassionate and competent end-of-life care for all in Russia.
What made you decide to follow a career in palliative and end-of-life care?
I used to work as a doctor in a Russian polyclinic in Kemerovo and witnessed deficiencies in how the Russian health system managed incurable patients, especially terminally ill cancer patients, who did not receive the care they needed. Doctors simply did not know how to deal with them. Then, 15 years ago, I attended palliative care lectures given by colleagues from the UK. One of these lectures in particular, by British palliative care nurse consultant Maureen Gill, made a tremendous impression on me. Later, I visited the UK to learn how hospice staff work. I was astonished. The level of care provided to terminally ill patients and the compassionate attitude of caregivers were amazing.
Over time, I became familiar with palliative care service provision in the Netherlands, the USA, Poland and other countries. Studying and training in palliative care gave me the confidence to advocate the cause of palliative care in my country. My professional oath gave me the strength to develop palliative care and pain relief for the benefit of Russian patients. I believe that patients in Russia deserve to receive adequate pain management, high-quality care and respect for their dignity at the end of their lives.
How would you describe the palliative care landscape in Russia?
Palliative care has had difficult beginnings in Russia. The first hospices were founded in the early 1990s with the help of Victor Zorza2 and our foreign colleagues through the British-Russian Hospice Society. In these most difficult of times for the country, which was going through an economic and social crisis, an enormous amount of energy went into setting up hospices in Saint Petersburg, Kemerovo,3 Moscow, Samara, Perm and Ulyanovsk. The hope was that palliative care would continue to develop. Unfortunately, this did not happen. On the contrary, the situation gradually worsened.
During the past 20 years, palliative care has suffered from the same ailments as the rest of the Russian healthcare system. Many medical professionals left healthcare altogether – and they continue to do so. Despite reassuring official statements, the infrastructure continues to deteriorate. Only a few doctors and nurses have had the opportunity to learn about the principles of palliative care from their Western colleagues. Another barrier to the development of palliative care in Russia has been professional incompetence at all levels of the medical system. Some developers of palliative care projects even affirmed that palliative care was well developed in Russia and that there were no issues with pain management.
What is the most pressing problem that needs to be solved in order to improve palliative care in Russia?
Despite the fact that Russia has signed the UN conventions on narcotic drugs and psychotropic substances, the Russian federal law on narcotic drugs and psychotropic substances, first issued in 1998 and amended in 2009, strictly controls their distribution and does not guarantee access for patients who need them for pain relief. Moreover, it established criminal charges for physicians who violate the prescription rules. At the same time, until 2012, codeine-containing drugs were dispensed over-the-counter without prescription, which resulted in a tremendous increase in the number of young people addicted to the morphine derivative desomorphine.
The Russian Ministry of Health issued strict orders concerning the prescription, storage and disposal of strong opioids, supposedly to prevent illegal trafficking, with very little concern for the needs of patients. No attention whatsoever was given to training doctors and nurses in pain management. The Ministry of Health also removed short-acting morphine tablets from the list of essential drugs. In 2011, for the first time, palliative care was included as a type of medical service in a revised federal law on Russian healthcare. However, in parallel, the Ministry of Health excluded hospices from the list of medical institutions allowed to provide palliative care. The Ministry of Internal Affairs issued extremely expensive safety requirements for the storage of opioids. Compliance with these requirements was beyond the limited resources of many hospitals and pharmacies. Small hospitals in rural areas and most pharmacies could simply not afford to keep narcotic drugs. The federal drug control services launched an unprecedented fight with physicians and veterinarians, ‘hunting down’ mistakes in opioid prescriptions.
As a result, the legal consumption of opioids for medical purposes, especially morphine, has been severely restricted for years. Physicians have stopped prescribing opioids, not only for patients with chronic pain but also in acute situations. The tragic suicide of Admiral Vyacheslav Apanasenko, a terminal cancer patient who suffered from unrelieved pain,4 and the criminal prosecution of Dr Alevtina Khorinyak, who prescribed tramadol to a terminally ill cancer patient,5 have brought this issue to the attention of professionals and the general public, not only in Russia but also worldwide.
How do you feel you and your colleagues have been able to improve palliative care in Russia?
When I studied public health at the University of South Florida, and participated in the leadership programmes of the Social Justice Institute in Tampa as a Ford Foundation fellow, I learned that you do not have to be an elected official or a politician to take part in healthcare policy-making. At that time, it was not obvious to Russian society that patients did not receive adequate palliative care and pain relief – except of course to the patients themselves, their families and the medical professionals involved in their care. Research was conducted to show the size of the problem and identify its causes.6–13 Findings were reported at palliative care conferences and seminars, in professional journals and community magazines. Palliative care started to be discussed on radio and television programmes.
Gradually, with the help of the internet and social networks, more and more people became interested in palliative care. We now form a group of about 40 palliative care advocates: doctors, nurses, people working for charitable institutions and journalists. We have organised campaigns to promote the use of palliative care services in Russia, advocate adequate pain relief for adult and paediatric patients, and support doctors so that they can deliver quality care. We have written to the Russian president, to the State Duma, to the Ministry of Health and to Moscow Endocrine Plant (a pharmaceutical company that produces opioids), detailing our analyses of the situation and proposals for improvement.
Tough discussions concerning the availability of short-acting morphine tablets and alternative forms of opioids for children have been going on for years between our group, officials from the Ministry of Health, the federal drug control services and pharmacologists from Moscow Endocrine Plant. The officials’ opinions are constantly changing, but we hope to solve the issue through continued dialogue.
Despite all our efforts, the Ministry of Health has not yet taken the necessary steps to liberalise, at least to some degree, the regulations around opioid prescription. Vyacheslav Apanasenko’s suicide has given us an opportunity to call for an immediate solution to the problem. At a recent meeting at the Russian Public Chamber, our experts reported on the current state of palliative care in Russia and presented proposals to solve the problems. The Public Chamber adopted a resolution that has become the basis for a list of instructions from the Russian government to various ministers.
In addition, Dr Nikolai Gerasimenko, Vice-chair of the Duma’s Committee on Health Protection, has put forward an amendment to the law on narcotic drugs and psychotropic substances which states that ‘priority access must be given to patients who are in need of narcotic drugs for pain relief’.
How has the EAPC assisted you in your efforts to support patients in Russia?
The support we have received from the EAPC and its current president Sheila Payne has been invaluable. Our group has used EAPC White Papers and position papers for advocacy purposes; for example, we helped to translate the White Paper on standards and norms for hospice and palliative care in Europe14,15 and used it in our discussions with decision-makers at the Ministry of Health.
When we found that we did not have enough strength to fight inappropriate decrees issued by the Ministry of Health – for example, the exclusion of hospices from the list of recognised palliative care institutions – we asked the EAPC for help. Sheila Payne responded to our request and wrote a letter to Veronica Skvortsova, the Russian Minister of Health, asking her to recognise the principles and values of palliative care. As a result, the government was persuaded to re-establish hospices as palliative care institutions in the Russian healthcare system. Today, we hear that new hospices are opening in many areas of the Russian Federation: the Urals, the Far East, Sakhalin, Siberia and the central regions.
Following Vyacheslav Apanasenko’s suicide, the EAPC reminded the Ministry of Health and the government that adequate pain management is an essential human right and that controlled drugs are absolutely necessary for medical and research purposes. Changes to the law on narcotic drugs and psychotropic substances are badly needed.
Can you highlight three things that are essential for people seeking to improve palliative care in their country?
In my view, if you want to improve palliative care in your country, it is crucial to:
- Unite a group of dedicated individuals, provide comprehensive analyses of the situation in your country and actively inform healthcare professionals as well society as a whole
- Ensure support from the international palliative care community
- Be persistent in your efforts to achieve your goals.
References
1. http://eapcnet.wordpress.com/2014/05/27/the-european-journal-of-palliative-care-palliative-care-policy-development-award-2014-winner-to-be-announced-in-lleida/ (last accessed 29/05/2014)
2. http://zorzahospice.org/ (last accessed 29/05/2014)
3. https://eapcnet.wordpress.com/2012/12/07/palliative-care-in-siberia-a-twenty-year-journey/ (last accessed 29/05/2014)
4. https://eapcnet.wordpress.com/2014/05/26/echoes-of-gunshot/ (last accessed 29/05/2014)
5. https://eapcnet.wordpress.com/2013/09/18/re-trial-for-russian-physician-prosecuted-for-helping-a-patient-in-pain/ (last accessed 29/05/2014)
6. Usenko O. What chance of going gently into that good night? Open Democracy, October 2013. www.opendemocracy.net/od-russia/olga-usenko/what-chance-of-going-gently-into-that-good-night (last accessed 12/06/2014)
7. Mimikoyan I. Politics of palliative care [in Russian]. J Vademecum 2013; 7: 42–45.
8. Kolbasova T. Pain treatment among fear and accusations [in Russian]. Medical Gazette No. 17–18, June 2013.
9. Usenko O. About the rational use of opioids in the treatment of chronic pain for terminally ill cancer patients [in Russian]. J Physician 2013; 5: 9–18.
10. Usenko O. About the necessity of strategic planning for palliative care in Russia [in Russian]. J Nurse 2011; 6: 3–10.
11. Kolbasova T. Pain without trims [in Russian]. Medical Gazette No. 3, January 2011.
12. Usenko O, Ryabova L, Svyatova S, Yasnitsky V, Meleshko P. Must chronic pain syndrome be treated? [in Russian] J Nurse 2011; 1: 4–10.
13. Usenko O, Ryabova L, Svyatova S, Voronova E, Bugoskaya T. Hospice and palliative care: from theory to practice [in Russian]. J Nurse 2010; 6: 3–10.
14. Radbruch L, Payne S. White paper on standards and norms for hospice and palliative care in Europe: part 1. European Journal of Palliative Care 2009; 16: 278–289.
15. Radbruch L, Payne S. White paper on standards and norms for hospice and palliative care in Europe: part 2. European Journal of Palliative Care 2010; 17: 22–33.
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