Discussing the research experts come to conclusions that there is a need for additional legal framework and extra training for healthcare workers involved in palliative medicine.
Over the past 5 years, Ukraine has significantly improved the accessibility of pain relief medications for palliative patients at the legislative level, but the main barrier is fictitious services of palliative care. The research found that actually the vast majority of healthcare workers continued to apply the old rules to patients. This was stated by NGOs and Human Rights Watch, who presented their research results at a roundtable held at Ukraine Crisis Media Center.
“We made 94 interviews with patients or their families, with about 50 health workers, 11 managers of health facilities in 10 regions of Ukraine. Of all respondents mentioned 5-14% of patients received a relatively successful pain relief – depending on the region. You see how it differs from the norm, if we use appropriate standards,” noted Andriy Rokhanskyi, director of NGO “Institute for Legal Research and Strategies”. He said that if pain relief medications are properly prescribed, according to recommendations of the World Health Organsiation (WHO), even a patient with 4th stage cancer does not suffer from pain 80-90% of the time. “We have concluded that all recommendations remained a formality – they are not fulfilled,” he stated.
According to experts, doctors now have “all the tools to provide a patient with quality palliative pain relief within the regulatory framework”. In particular, patients can get a prescription for painkillers for 10-15 days regardless of the place of residence now, instead of 3-5 days, and can take medicines on their own, not necessarily with the help of medical professionals. It is also cancellation of a commission on appointments of narcotic painkillers and ensuring the availability of oral morphine.
As it turned out, primary care doctors and heads of institutions resist changes most of all – for fear of causing addiction or complications and being held accountable or ignorance or unwillingness to know the legislative changes. Lesya Bratsiun, advisor to the Minister of Healthcare of Ukraine on palliative care, said that in November the Ministry of Healthcare had a survey of Kyiv primary healthcare institutions’ heads who participated in a seminar on palliative medicine. “It turned out that about 70% of doctors continue applying old practices, 86% use a commission to prescribe medications. In practice, this means that these drugs are not prescribed at all,” she said. Lesya Bratsiun added that about 85% of patients, who are not in hospital, cannot receive adequate pain relief at home.
Liudmyla Andriyishyn, director of mobile consulting section on palliative care at home, Ivano-Frankivsk Center of Palliative Care; director of Training Center shared her own experience in similar issues.
“Oddly enough, but patients received the biggest support from the law enforcement agencies – the Ministry of Internal Affairs and the State Service for Drug Control and Parliament Commissioner for Human Rights,” noted Kseniya Shapoval, “Public Health” program initiative director, International Renaissance Foundation. Oleg Dzisyak, director of Department on State Regulation and Control of Drugs, State Service of Ukraine on Medicaments and Drugs Control, said that the new drug policy strategy has significantly humanized the requirements and minimized the risks.
The draft law that provides for further humanization of the requirements has been submitted for consideration to the Verkhovna Rada. In particular, there is a provision allowing palliative patients to import and export narcotic and psychotropic drugs for their own use. “A person, his life and health should be put in the forefront,” stressed Oleg Dzisyak.
The main task is the proper education of healthcare workers.
The success of the legislative framework implementation will continue to depend on the educational work with the health workers and introduction of regular curricula in the undergraduate and postgraduate education of health workers, the experts stressed. “We recommend that all students of medical institutions should take a basic study course in palliative care. Those who will be engaged in palliative medicine should take an advanced study course in treatment protocols and do clinical practice,” noted Tetyana Kuper, Human Rights Watch Ukraine representative. Currently, with the support of the International Renaissance Foundation the two modules: ЕРЕС-О and ELNEC have been translated and adapted. They are used at Ivano-Frankivsk National Medical University, Kharkiv Medical College №1 and Cherkasy Medical College. It is also desirable to create the simplest possible informative form of reporting for doctors on how to conduct palliative work at the local level.
Lesya Bratsiun noted that the Ministry of Healthcare is creating an expert group that will monitor the knowledge of legislation of health workers and heads of medical institutions. It is planned to introduce a compulsory test on the knowledge of protocols and legislation in this area. Besides, the Ministry of Healthcare will support seminars aimed at clarifying the legislation which are conducted by the International Renaissance Foundation in the regions.
Volodymyr Tymoshenko, Eurasian Institute on Drugs Policy, and Sergiy Dubrov, senior non-staff anesthesiology specialist of the Ministry of Healthcare of Ukraine, noted that it is important to conduct training not only for health workers, but also for patients and their families so that they should be aware of their rights and possibilities to obtain help and know how to defend them, if necessary.
The urgent problem is the availability of opioids for patients from small towns and villages. For example, according to Kseniya Shapoval, there is only one pharmacy in Kirovohrad region, which sells such products. Among the problems are also high prices and lack of the sufficient range of effective modern anesthetics. There are difficulties with the inclusion of oncology children as well as HIV and TBC patients in the palliative medicine system. “We urge the government of Ukraine and Ministry of Healthcare not to delay the implementation of these steps because they are critically important for people who are constantly living with pain – for quality of life and death with dignity,” stressed Tetyana Kuper. “I hope the Ukrainian government, civil society and medical experts will continue to implement the reforms and conduct educational work for improving the quality of life of patients and their families,” added Naomi Burke-Shyne, senior program officer of Public Health Program, Open Society Foundation, London, UK.