Continuing the series on legal aspects of palliative care, Kseniya Shapoval, International Palliative Care Initiative Coordinator, Public Health Program of the International Renaissance Foundation, Ukraine, writes about the advocacy involved in dealing with palliative care as a human right in Ukraine.
Article published in Ehospice
Continuing the series on legal aspects of palliative care, Kseniya Shapoval, International Palliative Care Initiative Coordinator, Public Health Program of the International Renaissance Foundation, Ukraine, writes about the advocacy involved in dealing with palliative care as a human right in Ukraine.
’50 milligrams is not enough’, the story of Vlad Zhukovsky, a young man from Cherkasy city, which has become known around the world.
In 2009, oral morphine in Ukraine was not available, and 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 ampoules of 50 ml a day, the reply was that that no complaints on this issue had been received.
But in Ukraine there was pain. And 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.
Over the last couple of years, much has changed. In particular, HRW together with the International Renaissance Foundation (IRF) and Rivne branch of the Network of People Living with HIV\AIDS, CF ‘Light of Crimea’, Kharkiv Institute of legal research and analysis, conducted the documentation of palliative care patients’ records and interviewed patients and families on their experiences in accessing pain relief. The report provided an analysis of the palliative care situation in the country.
The UN Special Rapporteur on Torture, Juan Mendez, has reported that severe abuses in health care settings amount to cruel, inhumane and degrading treatment – and even torture.
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 provision 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.
Bucha is a small town on the outskirts of Kiev, the capital city of Ukraine. 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 1 January 2013, Lyudmyla successfully received morphine ampoules – 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 21 March 2013 with morphine never having reached her. She died in agony, without the ability to demand her right to health care provision.
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.
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.
Introduction of ‘courses on pain control and palliative care for future health professionals and pharmacists is one of the solutions, and training was planned for 2014. But defence of the rights of physicians working with opioids and concurrent training of law enforcement officials who control the legal circulation of narcotic drugs in the country remain critically important.
In February last year, tireless advocacy by human rights groups in Ukraine resulted in the signing of Order 77 by the Minister of Health, for the first time allowing oral morphine to be produced and distributed to patients with severe and moderate pain resulting from illnesses such as cancer and AIDS.
An important task for human rights defenders for the next five years will be to receive a positive decision of the national court to protect the rights of palliative care patients.
Human rights defenders, as well as activists of public organisations providing palliative care, need the knowledge and tools to influence situations similar to the Bucha Case.
There is a clear need for an introduction of a legal position at inpatient hospices and palliative care departments, as well as within on-site services. Also, standards for palliative care should be approved at the level of the Ministry of Health and failure to comply with them should result in the prosecution of officials.
The military involvement by Russia in Ukraine has added further barriers to delivering palliative care and ensuring that patients are able to realise their human rights to health care and freedom from pain.
Look out for an ehospice article by Viktoria Tymoshevska, IRF’s Public Health Program Director, about palliative care in this extremely challenging context, coming later this month.
