Hello from the capital of Ukraine, Kiev! A wonderful and historic city I have been blessed to have visited many, many times. It was one-year ago that I last visited Kiev. The conflict with the Russians that started in January 2014 created much turmoil and unrest.
The conflict not only changed the political landscape, it hampered efforts to advance Ukraine’s effort to give their people a better health system including the development of hospice and palliative care services. One of the reasons for my visit back to Ukraine.
Kseniya Shapoval is the International Palliative Care Initiative Coordinator for Public Health Program of the International Renaissance Foundation, Ukraine. Ms. Shapoval writes about the advocacy involved in dealing with palliative care as a human right in Ukraine. Kseniya provided me with a brief overview detailing some challenges and her views on Palliative Medicine. I wanted to share some of this with you today.
In 2009, oral morphine in Ukraine was not available. There were neither human rights organizations involved in protecting the rights of palliative patients nor strong associations that were able to defend the interests of patients or physicians.
The Ukrainian Ministry of Health had not implemented any programs concerning the development of palliative care. Moreover, when a Senior Researcher with Human Rights Watch (HRW), asked one of the officials of the Ministry of Health about the limited use of morphine in ampules of 50 ml a day, the reply was that that no complaints on this issue had been received.
But in Ukraine there was pain. This pain had many names and faces, lives and families. There were people dying in agony, left to be cared for by their families without any opportunity to get adequate pain relief.
Each year more than 80,000 people die from cancer in Ukraine. If cancer patients, who require analgesia with morphine or other opioids, aren’t able to access medicine, then it is not likely that patients with diseases other than cancer will receive adequate pain relief.
In May 2011, the report: ‘Uncontrolled Pain: Ukraine’s Obligation to Ensure Evidence-Based Palliative Care’ was submitted to the government of Ukraine. The main story of Vlad Zhukovsky, a young man from Cherkasy city in memory of whom the report was written, has become known around the world.
A large-scale information campaign: ‘Stop Pain’ was held in 2012-2013 and the provision of legal aid in three oblasts (regions) of Ukraine (Rivne oblast’, Kharkiv oblast’, Crimea area (city Simferopol’) was organized. In 2013, a report: ‘We have the right to live without pain and suffering’ on the rights of palliative care patients in Ukraine was presented by Ukrainian human rights organizations that had been monitoring the provision of pain relief and palliative care to patients.
In February 2013, tablet morphine of Ukrainian production was registered, and in March the first deliveries were made to all pharmacies in the country. April saw the changes to the Ministry of Health Order №360 on the prescription of controlled medicines.
In May, the Cabinet of Ministers of Ukraine approved the Resolution on drug trafficking in the medical sphere, which seriously altered the system of care provisions to patients at home by creating opportunities to store opioids for up to 15 days. Previously, only a commission of three doctors prescribed opioids, according to Order №360, and patients were not allowed to keep medications at home.
It seems that a lot had been done, but the main issue remains the practical application of new rules and regulations. One case serves as a vivid example of this: Bucha Case is one of a number of high-profile cases that was under investigation with the assistance of the Ombudsman.
Ms. Shapoval shares a heart-felt story that told place is Bucha which is a small town on the outskirts of Kiev. Bucha was the home of a pensioner named Lyudmyla, who was ill with cancer and home-bound. Doctors prescribed her morphine because of severe pain in March, 2012.
Until January 1, 2013, Lyudmyla successfully received morphine ampules – 40 ml per night. Morphine was delivered by ambulance, but in January, 2013 ambulances were forbidden to carry controlled drugs to chronically ill patients.
According to the regulations at the time, the function of providing pain relief to these patients should be carried out by a local polyclinic. Lyudmyla died on March 21, 2013 with morphine never having reached her. She died in agony, without the ability to demand her right to health care provisions.
This situation became known to human rights organizations, the Ukrainian League for Hospice and Palliative Care Development, the Office of the Commissioner for Human Rights and at all levels of the Ministry of Health.
Kseniya goes on to tell “We engaged everyone in solving the problem – the State Service of Ukraine on Drug Control, the Ministry of Interior, doctors of palliative service, and the press. But the negotiations had no outcomes – the patient did not receive the long-awaited prescription for morphine.”
This case is very revealing, as it seemed that the doctors and officials at the local level did not know the rules of appointment and prescription of controlled medications. After proceedings it became clear that officials were afraid to write a prescription for such medications as morphine.
It turned out that more than half a year in advance local officials knew about the abolition of the function of delivery of morphine to patients at home by ambulance. But no preparatory actions, in particular to obtain a license for drug circulation, were taken. Documents of the case were handed over to the Prosecutor’s Office for further investigation.
The system of protection of the rights of palliative care patients in Ukraine needs support and development. One of the main tasks of NGOs and legal advocacy organizations is to promote knowledge of the human right not to tolerate the pain and to demand high-quality healthcare regardless of location, age, nationality or social status.
The problem of weak knowledge among health care providers regarding the use of opioid analgesics and application of the legislation on circulation of controlled drugs requires a decision at the level of the Ministry of Health.
Kseniya is a leading advocate in Ukraine’s efforts around the better use of Hospice and Palliative Care and an inspiration to many people.
In closing, it is sad for me to see a country I love with such a low standard of health care in general. The standard of healthcare in Ukraine is extremely neglected with a severe lack of medical facilities and medicines. Some of the medical staff are highly trained, but some have only completed half of the training required. The healthcare is in an extremely poor state. Healthcare in Ukraine is supposed to be free and available to all citizens and registered long-term residents. Private healthcare is also available in the country. All employed citizens contribute to the healthcare system. The Government of Ukraine oversees the health service and all citizens are entitled by law to equal access to healthcare.
I hope to help in any way possible to support and assist in the development of Hospice and Palliative Care in Ukraine!