Palliative care in Kyrgyzstan is on the initial path of development. Despite significant achievements over the past few years in this area, further work is required both at the level of clinical care and at the improvement level of relevant bureaucratic procedures and legal acts.
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What is palliative care?
According to the World Health Organization (WHO), palliative care improves the quality of life for patients (and their families) who are facing a life-threatening illness. Palliative care is aimed at alleviating pain and symptoms, by providing “spiritual and psychosocial support from the time of diagnosis to the end of life or the loss of a loved one.”[1] Palliative care affirms life, refers to death as a natural process and does not seek to either accelerate or delay the coming of death. In many cases, palliative care is required for people in the terminal stage of incurable diseases. However, palliative care can also be used in the early stages of the disease, in combination with other types of therapy, such as chemotherapy or radiotherapy.
The right to live without pain = basic human right
Opioid medications are vital for pain relief, so their availability is critical for people who need palliative care. Since life without pain is included in the human right to health, the state should guarantee this right, and therefore it is necessary to ensure the availability of opioid medications for patients. However, at the same time, the state is also bound by the obligation to control narcotic substances to protect the population from addictions and improper use.[2] Because of this conflict, a barrier arises alertness to opioid medicines, associated with the desire to prevent inappropriate use and, last of all, creating an obstacle to access opioid painkillers for people suffering from pain.
This alertness can be observed among doctors who understand the responsibility and tight control when preparing and writing prescriptions for opioid medications, and subsequent reporting. Besides, this caution is observed among private pharmacies that do not want the bureaucratic delays associated with the purchase and sale of opioid painkillers, and then with complex reporting and checks by drug control authorities.
Legislators and decision-makers also have such concerns. Prevention of drug abuse may outweigh the provision of opioid medications for medical purposes.[3]
Barriers while treating pain in palliative care
Now, only some doctors can prescribe opioid painkillers in Kyrgyzstan (for example, oncologists in state clinics; doctors at polyclinics at the patient’s place of residence). This also serves as a kind of barrier in gaining access to opioid painkillers. To solve such problems, WHO suggests allowing all doctors and even, in some cases, specially trained nurses to prescribe opioid analgesics.[4] Moreover, WHO proposes regulatory and policy reforms in the given sphere. Establishment of national controlled substances authorities that can help countries adopt a balanced approach to controlled substances and avoid unnecessary restrictive regulatory and administrative barriers.[5]
Palliative care in Kyrgyzstan
Palliative care, as a separate area, has existed in Kyrgyzstan since 2005. The first experience was a small pilot project on palliative care in the Osh Regional Oncology Center, implemented by a local NGO with the support of doctors from Scotland.
Since 2010, the palliative care initiative has been running with the support of the Soros Foundation in Kyrgyzstan (SFK) and the Open Society Foundations’(OSFs) International Palliative Care Initiative (IPCI). The Ministry of Health is leading the initiative. During the existence of palliative care in Kyrgyzstan, much has been done: necessary legislative changes, a national palliative care strategy has been developed, support for medical education in the field of palliative care and directly in clinical practice.
At the same time, the field of activities to improve the situation with palliative care in Kyrgyzstan is very wide, ranging from the lack of on-site interdisciplinary palliative care teams to the difficulties in obtaining opioid pain relievers for patients undergoing palliative care.
The situation today: what has been done?
Until 2014, injectable opioids were used for pain relief in Kyrgyzstan. Legislative restrictions on the release of such painkillers have often turned into barriers to getting medications and getting rid of the pain for patients. After an information campaign conducted in 2012-2014 by representatives of civil society and the Public Council of the Mandatory Medical Insurance Fund (PC MMIF), tablet morphine was registered in Kyrgyzstan and included in the list of medicines involved in the MMIF state guarantee program. As part of the PC MMIF work, in 2015-2016 they also implemented the initiative “to improve access to painkillers opioids and, in general, palliative care services for patients at the last stage of cancer”.[6]
With the support of Soros Foundation-Kyrgyzstan program (SFK), three vital opioids were added to the medication list,[7] including Fentanyl[8] in the form of sticking plasters registered (and imported). This form of the drug acts transdermally, that is, through the skin. Thus, the medicine acts more sparingly and the patient does not need to cause additional discomfort from an injection or swallowing of the medicine (at the terminal stage of the disease, this can be difficult for patients). Also, one of the recent achievements was the registration of drop morphine in June 2019 in the register of the drug supply department of the Ministry of Health of the Kyrgyz Republic, and by the end of the year, the first batches of medicine should be brought to the country.
This form of medicine is especially necessary for the treatment of children, who require palliative care, however, for many adult palliative patients, drop morphine is also the optimal format. However, purchasing it may not be profitable for pharmacies, since the cost of this medicine is small, and it is difficult for entrepreneurs to import and carry out all bureaucratic procedures.[9]
There are palliative care departments to help patients: nowadays in Bishkek, the National Oncology Center has a palliative care department. Specialized in-patient palliative care units for adults and children have also been opened in the Osh Interregional Children’s Clinical Hospital, Tokmok Territorial Hospital, Jalal-Abad Regional Hospital (funded from the budget), and there are nursing care units as well.[10]
In the Kyrgyz Republic, 20 thousand patients a year need palliative care, or about 3,300 patients daily, 570 of them with an oncological diagnosis. The huge gap between the number of patients who need palliative care and those who receive is evidenced by the fact that there are only two hospitals for cancer patients in the country – 25 places in Bishkek, 5 places in Osh, and 60 inpatient beds for tuberculosis patients in Kemin. [11]
In addition to hospitals, three pilot projects of on-site multidisciplinary teams of doctors that provide palliative care at home were created. Based on these pilot projects, palliative care at home will be funded from the compulsory health insurance fund.
Sustainable work on the provision and development of palliative care is carried out by the Ergen Foundation, implementing a project on the work of the aforementioned multidisciplinary groups of doctors. The fund’s specialists cover about 40 people, but people who need such assistance are much more. Representatives of the fund are also part of the working group, who aim to improve legislation and regulations for the development of palliative care in Kyrgyzstan.
In 2015, the First Children’s Hospice opened in Bishkek. Hospice employees provide both medical and psychological assistance, where they help not only children but also their families. Both inpatient and outpatient palliative care is provided at home. Also, the First Children’s Hospice conducts successful fundraising and information campaigns, attracting not only finances but also volunteers in their work.
Palliative care in legislation, education and clinical practice in the Kyrgyz Republic
At the decision-making level since 2005, the following has been done:
- Parliament passed amendments to key laws related to healthcare (2016). These legislative changes define palliative care and outline the state’s obligations to provide free palliative care to people who need it.[12]Palliative care was included in the Den-Sooluk National Health System Reform Strategy, which is the main document regulating key government priorities and actions to ensure access of the population, including especially vulnerable groups, to health and medicine.
- The palliative care development program has been advanced and approved for its second edition for 2017-2021, taking into account WHO recommendations;[13]
- Legislative changes have been made to simplify prescribing opioids and increased the amount of free morphine for cancer patients. [14]
- In August 2019, the government discussed a plan of measures to simplify access to pain medication drugs for patients in need, taking into account barriers for pharmaceutical companies, designing prescriptions, imperfections in legal acts to control pain medication, and other aspects.[15]
In the field of education and implementation in clinical practice, the following has been done:
- A series of training on palliative care has been held for doctors and medical staff, at the level of primary care, as well as at the departments of medical universities for students.
- In 2015-2016 a series of workshops on the implementation of clinical protocols and palliative care guidelines were held for more than 300 doctors of family medicine centers, heads of primary health care facilities, supervisors, as well as key MMIF staff, and regional MMIF departments, key NGOs in all 7 regions.[16]
- Methodological manuals and palliative care guidelines for doctors and medical staff have been developed. [17][18]
- The clinical protocol for chronic pain management was developed and approved by order of the Ministry of Health in 2013. [19]
Pharmacist: “how much to weigh in grams?”
The Mandatory Health Insurance Fund of the Kyrgyz Republic previously paid only 3,000 mg of morphine per patient (per year), but if more was required, then there were difficulties in substantiating and writing out the prescription, getting the drug and paying for it.[20]
In the course of work to improve palliative care for patients and the availability of painkillers for them, since 2018 it has become possible to receive 5,000 mg of morphine per year per patient for free.[21]
In 2018, legislative changes were introduced to allow the morphine limit (the aforementioned 5000 mg) to be exceeded for patients with incurable oncological diseases and to simplify the prescription of opioid painkillers.[22]
If funds are available at family medicine centers, this rate can be doubled for terminal cancer patients.[23] Currently, only patients with terminal cancer are included in the state guarantees program (tuberculosis patients are covered by the budget).
Opioid painkillers are now included in the list of preferential medications (morphine, tramadol, etc.).[24] There are also positive legislative changes in prescriptions: earlier it was possible to prescribe 50 tablets, now it was 100, for ampoules it was possible to prescribe 20, now the patient can get 40 with one prescription.[25]
Another recent news on the development of palliative care in Kyrgyzstan was the publication of an order by the Ministry of Health, according to which non-governmental, private organizations can take a license to provide palliative care for cancer patients.[26] At the moment, the issuance of licenses covers only the provision of palliative care for cancer patients, however, in the future, work should be carried out to assist people with other diagnoses, who also require palliative care.
Problems to be Solved
With all the results achieved and active development in this direction, several problems need to be addressed.
Despite all the efforts and results achieved in the development of palliative care in Kyrgyzstan, a significant number of people do not receive pain relief medications.
The table below provides information on patients and the number of opioid painkillers prescribed.
Opioid painkillers ≠ drugs?
A separate difficulty is an attitude to the opioids of the patients themselves or their relatives. A stereotypical attitude to medications like drugs can lead to a refusal to take them, endure the pain until the last opportunity, although this is not necessary. Moreover, cancer patients may not know their diagnosis at all in cases where relatives hide it from them or avoid morphine as long as they can stand the pain, thinking that it is too early and dangerous to take opioids.
Besides, it happens that patients and/or their relatives are in despair, having heard that a person cannot be cured, they are trying to follow alternative paths. For example, they begin to turn to healers and, instead of medicines, take alternative methods of treatment, which leads to sad, sometimes fatal results.
A vivid example of such an “alternative” approach to treating patients in the terminal stages of serious diseases are the activities of Hashim Zainaliev (healer), who was involved in the “treatment” of patients (including cancer), as a result of which several people had died. Zainaliev’s activities led to lethal results and were widely covered in the media, and the public is monitoring the trial in this regard.[27] However, this is only the tip of the iceberg: there are many healers in Kyrgyzstan and, due to the tendency to loss of confidence in the healthcare system, many people prefer to be treated themselves and treat their children with alternative ways.
(Non) availability of opioid painkillers
Despite legislative changes that have increased the number of opioid painkillers, as well as all changes to simplify the prescription process and the results achieved, the actual absence of opioid painkillers on sale can be an additional complication for patients.
The problem is that private pharmacies often do not want to work with opioids because of the complicated reporting system and additional bureaucratic obstacles (one needs to get a license from the Ministry of Health to sell medications, conclude an agreement that includes a mandatory health insurance plan), as well as for fear of possible problems from drug control authorities.
Thus, opioid painkillers may not always be easy to get for those who need them. In Bishkek and major cities, state-owned pharmacies provide opioid painkillers, but the situation is more complicated in regions and remote settlements. To save from pain, patients or their relatives have to go where the medicine is being sold, but for patients living in regions or remote rural areas, the nearest opioid-selling pharmacy may be in a nearby town. [28]
Recommendations:
- Currently, perinatal palliative care in Kyrgyzstan is not developed and is one of the necessary directions for further development of palliative care in Kyrgyzstan
- Expand the circle of doctors who can prescribe opioid painkillers
- According to current legislation, non-governmental private organizations can obtain a license to provide palliative care for cancer patients, however, in the future, work will be needed to assist a similar format for people with other diagnoses, in which palliative care may also be necessary.
- Ensuring the availability of opioid painkillers in private pharmacies, including in the field, including remote areas in rural regions (possibly additional advocacy work with local pharmacies), especially if the presence of palliative patients is known in a particular locality.
- Explanatory advocacy for opioid pain medication among patients – morphine is a modern drug that relieves pain, it does not cause harm at the incurable stage of the disease, but is an effective drug that improves the patient’s quality of life. Pain treatment, life without pain is one of the basic human rights, patients should be informed that pain should not be endured.
- Advocacy of palliative care as a medical industry and as the best way to treat incurable patients in terminal stages of the disease. Advocacy of the idea of death in decent conditions, advocacy of the right to pain control.
- General simplification of regulatory legal acts and optimization of procedures governing the prescription, dispensing, storage and use of narcotic painkillers to remove all unnecessary requirements.
- Relatives of patients caring for them do not always have the skills to care for bedridden patients, they cannot always perform some medical manipulations that will alleviate the patient’s condition. It is possible to train relatives from the side of basic interdisciplinary groups of doctors on basic aspects and manipulations of palliative care at home will improve quality lives of palliative patients and their families.
This article was prepared as part of the Giving Voice, Driving Change – from the Borderland to the Steppes Project. The opinions expressed in the article do not reflect the position of the editorial or donor.
Palliative Care Development in Kyrgyzstan
Aibek Mukambetov, Taalaigul Sabyrbekova, Lola Asanalieva, Ilim Sadykov, Stephen R. Connor
Plumx metrics
DOI: https://doi.org/10.1016/j.jpainsymman.2017.05.01.010
https://www.jpsmjournal.com/article/S0885-3924(17)30390-1/fulltext
[1] More information on the WHO website: https://www.who.int/cancer/palliative/en/
[2] 1961 Single Convention on Narcotic Drugs
[3]Planning and delivering palliative care services: A guide for program managers. Planning and implementing palliative care services: a guide for program managers. pg. 4-5, Copenhagen: World Health Organization, Regional Office for Europe; 2018 License: CC BY-NC-SA 3.0 IGO. (full text is available at: http://www.euro.who.int/__data/assets/pdf_file/0009/383463/palliative-care-guide-rus.pdf?ua=1)
[4] p. 52-53, http://www.euro.who.int/__data/assets/pdf_file/0009/383463/palliative-care-guide-rus.pdf?ua=1
[5] p. 52-53, http://www.euro.who.int/__data/assets/pdf_file/0009/383463/palliative-care-guide-rus.pdf?ua=1
[6] Source: Report of the Public Council of the Mandatory Health Insurance Fund under the Government of the Kyrgyz Republic (OS MHIF RCC) on the work done for 2015 – 2016.
[7] List of vital medicines, including for palliative care, decree of June 6, 2018 (on the website of the Ministry of Health). http://www.med.kg/images/MyFiles/obyavleniya/228_PJVLS.pdf
[8] Soros Foundation-Kyrgyzstan Annual Report 2018 (source: http://soros.kg/wp-content/uploads/2019/04/SFKAnnualReportRussian2018.pdf)
[9] More information is available at: https://kaktus.media/doc/396595_vpervye_v_kyrgyzstane_dlia_pomoshi_onkobolnym_detiam_bydyt_primeniat_kapelnyy_morfin.html
[10] Soros Foundation-Kyrgyzstan Annual Report 2018 (source: http://soros.kg/wp-content/uploads/2019/04/SFKAnnualReportRussian2018.pdf)
[11] http://kabar.kg/news/v-bishkeke-vpervye-proidet-slet-volonterov-palliativnoi-pomoshchi/
[12] Law of the Kyrgyz Republic dated April 29, 2016 No. 52, “On Amending Certain Legislative Acts of the Kyrgyz Republic on the Protection of Citizens’ Health” (source: http://cbd.minjust.gov.kg/act/view/ru -en / 111331)
[13] This work is supported by the Soros Foundation-Kyrgyzstan (FGC) and identified priority areas for the development of children’s palliative care in the republic.
[14] Decree of May 22, 2018 No. 242 on amendments to the decree of the Government of the Kyrgyz Republic “On approval of the procedure for writing prescriptions for medicines and on their dispensing in the Kyrgyz Republic” dated January 5, 2011 No. 2 (source: http: // cbd.minjust.gov.kg/act/view/ru-ru/11880)
[15] Further details of the meeting on facilitating access to painkillers are available on the government website at: http://www.gov.kg/?p=136366&lang=en
[16] Source: Report of the Public Council of the Mandatory Health Insurance Fund under the Government of the Kyrgyz Republic (OS MHIF RCC) on the work done for 2015 – 2016.
[17] “Palliative care – Clinical guidelines for organizations engaged in medical and preventive activities in the Kyrgyz Republic”, 2012, the Ministry of Health of the Kyrgyz Republic, the Republican Center for the Development of Health and Information Technologies, the Public Foundation “Ergene”, the National Center for Oncology (source: https: //www.kgma.kg/pdf%20files/%D0%9A%D0%A0/%D0%9A%D0%A0_%D0%9F%D0%B0%D0%BB%D0%BB % D0% B8% D0% B0% D1% 82% D0% B8% D0% B2% D0% BD% D0% B0% D1% 8F% 20% D0% BF% D0% BE% D0% BC% D0% BE % D1% 89% D1% 8C.pdf)
[18] Links to the orders of the Ministry of Health, guidelines and protocols for the provision of palliative care for certain groups of patients (source: http://www.med.kg/ru/meditsinskoe-obrazovanie-i-nauka/kp-kr.html)
[19] “Management of chronic pain – a clinical protocol”, Ministry of Health of the Kyrgyz Republic, Ergen public foundation, National Oncology Center, Bishkek – 2013 (source: https: //www.kgma.kg/pdf%20files/%D0%9A%D0%9F/%D0%9A%D0%9F_%D0%A5%D1%80%D0%BE%D0%BD % D0% B8% D1% 87% D0% B5% D1% 81% D0% BA% D0% B0% D1% 8F_% D0% 91% D0% BE% D0% BB% D1% 8C.pdf)
[20]The full text of the publication is available at the link (in English): https://www.jpsmjournal.com/article/S0885-3924(17)30390-1/fulltext
[21] Decree of May 22, 2018 No. 242 On Amending the Decree of the Government of the Kyrgyz Republic “On Approving the Procedure for Prescribing Prescriptions for Medicines and on Their Release in the Kyrgyz Republic” dated January 5, 2011 No. 2 (source: http: // cbd.minjust.gov.kg/act/view/ru-ru/11880
[22] Soros Foundation-Kyrgyzstan Annual Report 2018 (source: http://soros.kg/wp-content/uploads/2019/04/SFKAnnualReportRussian2018.pdf)
[23] By the Decree of the Government of the Kyrgyz Republic dated September 7, 2018 No. 420 “On Amending Certain Decisions of the Government of the Kyrgyz Republic in the Field of Health and Medical Insurance”, amendments and addenda were introduced into the State Guarantees Program, which will enter into force on September 29, 2018. The full text is available at: http://foms.kg/page/gosgarantii
[24] The list of medicines reimbursed for the insured population under the Additional Compulsory Health Insurance Program with reimbursement prices is available here: http://foms.kg/storage/web/spravochniki/%D0%BF%D0%B5%D1%80%D0 % B5% D1% 87% D0% B5% D0% BD% D1% 8C-% D0% B2% D0% BE% D0% B7% D0% BC% D0% B5% D1% 89% D0% B0% D0% B5% D0% BC% D1% 8B% D1% 85% D0% 9B% D0% A1.pdf
[25] Prescription rules for medicines
(As amended by the decrees of the Government of the Kyrgyz Republic dated April 22, 2015 No. 232, May 22, 2018 No. 242)
[26]Order No. 337 of the Ministry of Health of the Kyrgyz Republic, Appendix 1 to Order М3 of the Kyrgyz Republic dated 04/21/2017 No. 337, “Temporary Regulation on the Procedure for Licensing Private Medical Activities in the Kyrgyz Republic”; see also Appendix 2 to the order M3 of the Kyrgyz Republic dated 04/21/2017. No. 337. The full text for June 7, 2019 is available at: https://lic.med.kg/docs/normt/sndtd856.pdf
[27] Guidance on the calculation of requirements for substances under international control Developed by the International Narcotics Control Board and the World Health Organization for use by national competent authorities UNITED NATIONS New York, 2012 (as of May 24, 2019, full text is available here: https://www.incb.org/documents/Narcotic-Drugs/Guidelines/estimating_requirements/NAR_Guide_on_Estimating_RU_Ebook.pdf)
[28] At the moment, opioid painkillers can be purchased in 23 pharmacies in 11 settlements of Kyrgyzstan (for more information on the addresses of pharmacies in the study of the graduate student of the Medical Academy, contact on the recommendation of Taalaigul Sabyrbekova).