Human rights in Ukraine – 2007. 17. The right to healthcare

[1]

1.  Overview

No reform of the healthcare system took place and it remains in a state of decline. Services are at a low level, the system is not accessible and inefficient with a high level of corruption. For many years financing of medical institutions and services has been clearly inadequate. The situation is particularly critical in rural areas and in small towns.

There is still no legislation clearly setting out patients’ rights. Legislation is contradictory and uncoordinated leaving scope for its non-enforcement. The law, for example, does not properly stipulate such rights of patients as access to their medical records, the right to choose or reject a doctor or medical institution, the right to turn down medical intervention, etc.

There were some changes in legislation however these were in the main aimed at standardizing the norms of the Civil Code with those of other laws. Some amendments were made to the Law “On the fundamental principles of health care legislation in Ukraine”[2] with regard to protection of patients’ rights. These included the addition of a norm on “the right of a patient being treated as an inpatient in a healthcare institution of access to him or her by other medical workers, members of his or her family, guardian, carer, notary or lawyers, as well as of a priest to conduct religious services or rituals”.

Norms were also added to legislation regarding access to medical records as well as on confidentiality of such records. For example, there is now a norm in legislation making it illegal to inform employers about a person having sought medical care, their diagnosis or methods of treatment. UHHRU had previously used administrative court suits to get the subordinate normative acts revoked which had effectively established procedure which notified a person’s workplace of their diagnosis via the system of medical certificates required.[3]

According to figures from human rights organizations, the level of discrimination against people living with HIV/AIDS, groups vulnerable to infection, for example, injecting drug users and sex workers, remains very high. It is seen mainly from the staff of law enforcement agencies, health care institutions and educational institutions.  These are most often norms relating to the requirement for tests to be voluntary, to doctors’ duty to keep information to themselves and confidentiality of medical records and generally the right to privacy. Personnel of law enforcement agencies threaten to prosecute people unless they take a test for HIV and information about positive results of such tests become known not only in health care establishments, but also in kindergartens or schools where the person infected is a child. There have been cases where people have been refused medical care, or its scale has been reduced. All of this contributes to an increase in the stigmatization and marginalization of people living with HIV/AIDS.

Confirmation can be seen in the growing number of cases where the right to medical confidentiality of people living with HIV/AIDS has been infringed, as well as their right to receive information about their diagnosis. We can give several examples. M. who was serving in the military in the Odessa region was not informed during a periodic medical check that she had HIV/AIDS which resulted in her placing the lives of her family and friends in danger. At the same time other people were immediately informed of her diagnosis which led to her dismissal and family problems. N. from Kryvy Rih was also not informed for a long time of his HIV/AIDS diagnosis. He was, furthermore, a blood donor for his wife, and she was found to have HIV/AIDS. Yet for a long time he was not informed of his illness.

In order to regulate clinical tests of new medication etc and protect the rights of patients taking part in these tests, back in 2006 a Ministry of Health Order No. 314 “Rules for conducting clinical tests of medical technology and products for medical purposes used in international practice” was drawn up and adopted.[4].  This was an extremely important step towards stricter observance of a patient’s rights regarding informed consent based on comprehensive and accessible information from medical personnel.

At the end of 2007 National Deputy Y. Karakai tabled in the Verkhovna Rada a draft law “On protection of patients’ rights”[5].  This is a very interesting attempt to unite in one document all the various views on medical law in general. The attempt cannot be considered successful however it reflects a trend by specialists to establish material and procedural norms on the basis of which patients’ rights are protected.

It is undoubtedly very important to pass a law on patients’ rights which should include clear mechanisms for protecting these rights. However the draft law reflects the contradictions and lack of coordination healthcare legislation which is, unfortunately, hampering the development of this whole area.

Virtually each article of the draft law deals with a mysterious “specially authorized centre of executive power which is given unconstitutional rights with regard to the patient. A large number of articles fail to comply with the Constitution, legislation and international law.

In view of this, the adoption of the draft law is unacceptable since it is this law which would infringe patients’ rights.

The model normative legal act which a Ukrainian law on the rights of the patient should be based on is the Fourteen Rights of the Patient which is part two of the European Charter of Patients’ Rights. These rights are design to guarantee “a high level of human health protection”[6] and ensure a high quality of services provided by various national healthcare services.

There remains virtually no system for informing and educating doctors on patients’ rights.

The system for funding the healthcare system is inadequate making it impossible to provide a decent level of free medical care.

The present mechanisms for funding reduce the efficiency of the health care system. The report by the Blue Ribbon Commission was blunt in its assessment: “Public funds are allocated, in essence, to support the costs of existing health care facilities and not to achieve health care results. Hospitals face little incentive to reduce the number of admissions, as financing is still based on bed capacity. This creates perverse incentives, resulting in a rise in unsubstantiated hospitalizations. Hospital stays in Ukraine are among the longest in Europe, at an average of 14.4 days. State and communal health care institutions continue to have the status of spending units with very limited rights and incentives to make management and financial decisions that would allow for more efficient use of resources. Allocation of budgetary funds is based on a list of permitted line items, with norms set by the Ministry of Health. Although financing is decentralized, with 80 percent of total funding allocated at the regional and local levels, health care administrators have little authority to deviate from rigid line-item budgets. Budgets are strictly itemized, and the volume of resources set aside for each budgetary item is strictly regulated.

4.92 UAH per day is allocated for each patient in hospital (for both treatment and meals). Even less is assigned for one visit to an outpatient clinic – 0.42 UAH. The budget for 2007 allocated a mere 100 million UAH for rural health care establishments despite an overall increase in funding of health care of more than 4 billion UAH. Such a pitiful amount of funding is manifestly inadequate to meet the needs of rural medicine. According to information from the Ministry of Health, at present there are almost 300 villages with populations of between 500 and 1, 000 people which don’t have hospitals at all.[7]

Another major problem is the neglected state of primary care. “Too much funding goes on expensive inpatient care, while less costly primary care is neglected. Ukraine has 5.94 hospitals per 100 thousand people, higher than the EU average of 3.2. Maintaining such a large number of inpatient facilities restricts funding for other purposes. The volume of specialized care exceeds that of primary care, turning the typical “heath care pyramid” upside down. Primary doctors constitute just 26 percent of all doctors, whereas in some European countries the share is as high as 50 percent. Ukraine has only 3, 354 of the 33, 000 general and family physicians it needs, so hospitals and ambulance services are used to provide routine medical assistance. By one estimate, nearly one third of hospital patients would qualify for outpatient care”^[8]

An absolute majority, over 85% of the population, are not able to receive medical care in private medical establishments because their income is too low. Since 1996 the percentage of individual payments which the population officially pays has risen from 18.8% to 38.5% of the overall spending on health care. If one adds the unofficial amounts of payment then this percentage will rise to 52%. This means that in fact Ukrainians pay more than half of the cost of medical services from their own pocket. Most of this money goes on medicines. Widespread payments for health care make it less accessible for the poorer parts of society which infringes the principles of justice and equity. Charges make the poorer put off going to the doctor as a result of which they often only go when the need is already urgent when an illness that might have otherwise been curable has gone beyond that stage. This situation results in a considerable number of people effectively do not received medical care.

Informal payments in the area of health care foster corruption. Such informal payments commonly made for medical services are viewed by a lot of medical workers as justified compensation for their low salaries. The volume of these payments is large, and while on the one hand they keep medical workers from abandoning the profession, they do give preference to the wealthy and undermine the transparency of the system, which has a demoralizing effect. There are cases where doctors demand extra payment for treating their patients with proper care. This has become so habitual in many medical institutions that doctors don’t even talk about it directly: the patient already knows from experience that if s/he doesn’t pay up, this will be reflected in the treatment. There is believed to be particular corruption over any kinds of medical operations, services during childbirth and examinations using expensive equipment.

In November 2007 in Geneva, the UN Committee on Economic, Social and Cultural Rights considered the fifth periodic report of Ukraine on the implementation of the International Covenant on Economic, Social and Cultural Rights. Its Concluding Observations[9]: include the following:

 «50. The Committee recommends that the State party increase its efforts to improve the quality and availability of health care in rural areas, by ensuring adequate funding and strengthening community-based and mobile health services.

51. The Committee recommends that the State party continue its efforts and take urgent measures to improve the accessibility and availability of HIV prevention to all the population and the treatment, care and support of persons living with HIV/AIDS, including in prisons and detention centres, combat discrimination against persons living with HIV/AIDS and high risk groups, ensure the confidentiality of information about a person’s HIV status, and make drug substitution therapy and other HIV prevention services more accessible for drug users.

52. The Committee recommends that the State party take urgent measures to improve tuberculosis prevention and accessibility of specialized tuberculosis treatment and medication, in particular in prisons, detention centres and police stations, and reduce delays in screening detainees for tuberculosis.

Experience gained by the Public Advice Centre of the Kharkiv Human Rights Protection Group shows that people need independent legal consultation and professional assistance in standing up for their rights in this sphere. For example, in 2007 1, 279 people approached KHPG on various subjects. 29 directly gave as their reason infringement of their rights in healthcare establishments, this being 2.26% of the total number of complaints. 22 people complained of inadequate medical examinations; 3 – of a lack of sufficient information about their state of health; 4 – of inadequate treatment. However, in some cases where the main reason for making a complaint was, for example, the actions of the courts, penal institutions, educational institutions, there were additional complaints about poor medical treatment or inadequate medical examinations. There were 34 such additional complaints in 2007.

Most infringements were thus connected with the right to qualified medical care, both at primary, as well as secondary and tertiary levels. In second place came infringements of the duty to provide medical information and conditions for this.

2.  The right to medical care in penal institutions

People deprived of their liberty on whatever grounds have the same right to adequate medical care and treatment as any other citizens. They are patients just the same and their rights must be properly protected.

The case of Kucheruk v. Ukraine

The European Court of Human Rights passed judgment in this case (application No. 257004) on 6 September 2007.  Among the violations found was that of Article 3 of the Convention in respect of the lack of adequate medical treatment and assistance.

147. The applicant submitted that he had not been provided with necessary medical treatment in the course of his detention in the SIZO from 16 April 2002 to 17 May 2002 and again from early June 2002 until 17 July 2002. The Government maintained that the applicant had received all necessary medical care and assistance while he was detained.

148. The Court recalls that the authorities are under an obligation to protect the health of persons deprived of liberty[10]. The lack of appropriate medical care may amount to treatment contrary to Article 3 [11] In particular, the assessment of whether the treatment or punishment concerned is incompatible with the standards of Article 3 has, in the case of mentally ill persons, to take into consideration their vulnerability and their inability, in some cases, to complain coherently or at all about how they are being affected by any particular treatment[12].

149. It next notes its findings with regard to the applicant’s solitary confinement and handcuffing, ), which in themselves suggest that the domestic authorities did not provide appropriate medical treatment and assistance to the applicant while he was in disciplinary detention.

150. The Court also notes that after the applicant’s first examination on admission on 16 April 2002, following which he was placed in the psychiatric ward of the SIZO, there was no subsequent reference to a psychiatrist until 17 May 2002, when the applicant was transferred to the Hospital for forensic examination.

151. The forensic report of 29 May 2002 recommended that the applicant be given treatment in a specialised hospital. However, this recommendation was not followed immediately and in early June 2002 the applicant was transferred back to the SIZO and placed in an ordinary cell. For a month after his readmission to the SIZO the applicant was examined by a psychiatrist only on one occasion and remained in an ordinary cell until after his assault on an inmate on 2 July 2002. In the Court’s view, this cannot be deemed to be adequate and reasonable medical attention, given the applicant’s serious mental condition.

152. In these circumstances, the Court considers that there has been a violation of Article 3 of the Convention as regards the lack of adequate medical treatment and assistance provided to the applicant while he was detained on remand, amounting to inhuman and degrading treatment.

The case of B.

In this case it was only the intervention of the European Court of Human Rights following an application from the Kharkiv Human Rights Protection Group which enabled B to receive the medical care needed.

In March 2007 B. was detained by police and charged with a crime under Articles 121 § 2 and 185 § 3 of the Criminal Code, and remanded in custody. The case was passed to the Zmiyivsky District Court in the Kharkiv region.

In April while held in SIZO [remand unit] No. 27 he was diagnosed as suffering from cancer (hyper-nephroma) of the left kidney with metastases in the lungs, and chronic liver cirrhosis 

B’s representative applied to the court on several occasions asking for another preventive measure rather than remand in custody to be chosen because of B’s grave state of health, however none of the applications were allowed. B. was also forcibly brought to the court for hearings into his case (the court being 50 kilometres away from the SIZO) which caused him enormous physical and psychological suffering.

Both before being placed in the SIZO and while held there, B. constantly complained of pain, and it was difficult to move about and to breathe. The court hearings were particularly gruelling and he was not able to endure them. According to a report from the head of the SIZO medical unit, B. was treated for his symptoms, including through painkilling drugs, however he asserted that the amount of medication was insufficient given the advanced stage of his illness.  There was, moreover, no oncology expert in SIZO No. 27.

The application to the European Court of Human Rights states that the failure to provide proper medical care is a violation of Article 3 of the Convention. It adds that the forced attendance of court hearings was causing B. pain and physical and psychological suffering which could be interpreted as torture in the understanding of Article 3 of the Convention.

Following the appeal to the European Court and to the appropriate State bodies, B. was placed in the regional oncology clinic where a malignant tumour was removed and where he received the proper post-operation treatment, radiation therapy, and so forth.

The case of Yakovenko

Yet another example of the situation as regards medical care in penal institutions is the case of Oleg Yakovenko[13].

In June 2003 Mr Yakovenko, on probation following a conviction for burglary, was arrested and placed in police custody, again on suspicion of burglary. He alleged that he confessed to that crime after being subjected to ill-treatment in police custody and retracted his statements when on trial before Balaklavsky District Court. In November 2005 he was found guilty as charged and sentenced to three years and seven months’ imprisonment, later reduced on appeal in October 2006 to three years and six months.

Awaiting that conviction Mr Yakovenko was detained in the Simferopol Detention Centre (Simferopol SIZO). As the police, prosecution and judicial authorities who dealt with his case were based in Sevastopol, he was transferred each month to the Sevastopol Detention Centre (Sevastopol ITT). Between June 2003 and April 2006, he spent in total about one year in that facility.

The applicant claimed that Sevastopol ITT was constantly overcrowded: he was held in cells of 15 to 22 m2 with 25 to 30 inmates. To corroborate that claim, the applicant submitted a letter of 10 May 2005 from the Head of Sevastopol City Police Department which stated that 240 inmates were held in the detention centre, which was designed to hold a maximum of 82 detainees. The applicant further alleged that inmates had to take turns to sleep, that the lights in the cells, situated in the basement, were permanently on and that the ventilation system was often out of order.

Mr Yakovenko alleged inhuman conditions of detention in Sevastopol ITT and when being transported to and from that facility; and, lack of medical care. The Court found that he had been held in seriously overcrowded conditions and that the sleeping conditions had also adversely affected his health. It also agreed that the lighting and ventilation had been inadequate.

During the remand period which lasted more than 3 years, Yakovenko was taken around 70 times a distance of 80 kilometres between Sevastopol where the court hearings were taking place and Simferopol where he was held in custody. The transportation took around 36 hours, during which he was given no food, and drinking water and use of the toilet were limited.  They were transported in train carriages (with more than 100 men in the carriage) or police vans.

At the beginning of autumn 2005 Yakovenko’s health seriously deteriorated. He lost weight (around 20 kilograms in 6 months). He had a temperature all the time. Numerous approaches to the medical unit of the Simferopol SIZO led to his being treated over 10 days in February 2006 with antibiotics in the SIZO hospital. Several chest x-rays were taken and he was tested for HIV. He was treated for bronchitis and according to the SIZO hospital – successfully (?!?)  No tuberculosis was found. Yakovenko and his mother only learned of his positive test for HIV in April 2006 in response to an information request of the SIZO in Simferopol. The deputy head of the SIZO informed that the test had been positive and the head of the SIZO learned of this at the end of February 2006. This was not, however, placed on Yakovenko’s medical records. Only a repeat test in May 2006 in the infectious diseases hospital in Sevastopol was recorded on his records and taken into consideration for determining treatment.

On 6 April 2006 Oleg’s mother turned to the Sevastopol Human Rights Group. She said that her son was dying and that she could do nothing to help him. The main thing at that stage was to ensure a correct diagnosis and designate treatment. After numerous appeals, he was finally examined, and the doctors said that he should be hospitalized. This however was not done. After an application was made on 26 April 2006 to the European Court of Human Rights, the Ukrainian authorities placed Yakovenko in a hospital to receive the necessary care. Three days later he was moved to the infectious diseases hospital in Sevastopol.  A year later, on 8 May 2007 Oleg Yavkovenko, aged 31, died in a Sevastopol anti-tuberculosis unit.

On 25 October 2007, the European Court of Human Rights issued its chamber judgment over the case of Oleg Yakovenko. It found that Ukraine had violated Article 3 (prohibition of inhuman or degrading treatment) of the European Convention on Human Rights because of the conditions Mr Yakovenko was held in, the failure to provide proper medical care, and the way he was treated when being transported between two detention centres. The Court awarded his mother compensation amounting to 10, 457 Euro.

During his remand, Oleg Yakovenko’s mother had repeatedly applied to the courts to choose another preventive measure not entailing deprivation of liberty. The reason given was that he needed hospital treatment. Each such application was turned down.

The Case of Olha Bilyak[14]

Olha Bilyak, born in 1971, was arrested on suspicion of having committed a crime and remanded in custody in a Kyiv SIZO. She denied the crime and made many applications to be released from custody, pointing to the weak evidence, her alibi, as well as to the fact that she had Group 2 disability status and had a child needing her care. The illnesses which Ms Bilyak suffered from are in the list of those constituting grounds for releasing a person convicted of a crime of serving their sentence. She was convicted by a first instance court, however the verdict was revoked at appeal level and the case returned for additional investigation.

While being held in the SIZO, Ms Bilyak contracted a severe form of pneumonia and did not receive adequate treatment. Her lawyer sent an application to the Head of the SIZO asking for Ms Bilyak to undergo a medical examination and be hospitalized, however received the response that her condition did not require hospital treatment. The Head of the SIZO says that he sent a letter to the investigator in which he informed that Ms Bilyak was seriously ill and could not take part in the investigation. The letter, however, did not say that her illness prevented her being held in a place of confinement.

On 30 January the investigator refused to allow the lawyer to see Ms Bilyak. On 2 February he told the lawyer that on 30 January he had sent the SIZO a decision to release her. The SIZO staff informed Ms Bilyak’s parents that she had been released on 30 January. After long searching, Ms Bilyak’s body was found in a morgue to which the morgue attendants said it had been brought on 30 January 2004.  The behaviour of the investigator and SIZO personnel give grounds for believing that they were trying to conceal what really happened. Ms Bilyak’s mother addressed complaints to the Prosecutor General and the Minister of Internal Affairs explaining the circumstances in detail.’

The lawyer, Zoya Shevchenko (Kyiv) who represented Ms Bilyak and her mother, complained to the prosecutors of the Shevchenkivsky and Solomensky districts, to the Head of SIZO No. 13 and to the Head of the State Department for the Execution of Sentences. At present she is continuing to seek to have a criminal investigation initiated into Ms Bilyak’s death, in order to ascertain the reasons and circumstances of what happened and to ensure that those responsible are punished. The lawyer has also sent an application to the European Court of Human Rights alleging violations of Articles 2, 3, 5 and 6 of the European Convention on Human Rights.

The case of P.

We would cite one more example that of convicted prisoner P. who was serving his sentence in the Vinnytsa Penal Colony No. 1.

P. complained that he was not being provided with medical care by the head of the penal colony’s medical unit. From the statement it is difficult to understand what his actual condition is since he only listed the complaints and the medication which his mother had sent him in a parcel. He complained of severe pain in the small of the back and lower, and skin eruptions. He had been sent painkillers and ointment for an allergy.

However the head of the medical unit T. refused to give him the medication sent claiming that there were no grounds. Even at this stage the actions of the doctor can not be considered adequate, since neither a rash on the skin nor pain in the small of the back is a diagnoses. Both could be caused by many illnesses, each requiring a different form of treatment. ‘

The head of the medical unit in his refusal to allow the medicine sent by P’s mother was not per se violating anything. However in not allowing the medication without a diagnosis, T. was obliged to admit P. to the medical unit and organize a serious medical examination involving not only a surgeon, but also a dermatologist and general doctor. Given P’s complaints of pain, he should have also prescribed painkillers which would cause no damage in all possible cases. P. was virtually left without any medical assistance at all, causing him psychological and physical suffering.

The behaviour of the head of the medical unit T. demonstrates indicators of the crime under Article 139 § 1 of the Criminal Code (failure to provide medical assistance) and a violation of Article 3 of the European Convention on Human Rights.

3.  Palliative care[15]

Palliative care refers to a range of medical, social, psychological and religious measures aimed at enhancing the quality of life of patients suffering from an incurable illness and not expected to live long, as well as members of their family. The main aims of such care are to relieve pain, remove or minimize difficulties in coping and other illness-related problems, providing care, psychological, social and spiritual assistance to the patient and his or her family either in hospices or at home.

Observance of patients’ rights in the provision of palliative care is a highly specific and complex issue. A person suffering is extremely vulnerable with pain and awareness of imminent death making them dependent on doctors. They become easy to manipulate. There is a risk that their safety will be disregarded, that they could be included in clinical experiments with the necessary ethical standards being observed. In the case of people not expected to live long there is a heightened risk of abuse of their property rights, including by relatives. On the other hand, doctors run up against difficult dilemmas over telling such patients the truth and offering them choice and a role in decision making.  Aspects regarding observance and especially defence of the rights of patients in palliative care are therefore an exceptionally difficult task in the system of healthcare and social protection.  

85 percent of patients die at home alone, suffering from pain, depression, lack of proper care and other aspects of their illness. An incurable illness elicits various social problems for the person and his or her family linked with the need for care.

In some regions – Donetsk, Zaporizhya, Lviv, Luhansk, Ivano-Frankivsk, Kyiv, Kherson and Kharkiv – thanks to local initiatives or civic organizations, hospices or inpatient units of palliative care in healthcare institutions have been created. In all there are places for around 650 patients. This only satisfies about 10% of the actual needs. These institutions do not ensure a social element in palliative care with the staff not including social workers, psychologists or legal consultants.

Legislation does not provide special normative legal acts to regulate and guarantee the right and access of palliative care.

It was only on 27 December 2007 that the Ministry of Health issued Order No. 866 “On approving sample regulations on hospices and palliative care units for people with HIV or AIDS”. This is a vital first step in developing palliative care.

The lack of State policy and a national programme on palliative care is seriously hampering the development of the latter. There are no human resources, no methodological base, standards and medical protocols, nor is there a system for training or providing professional development training to medical and social workers providing palliative care. The departmental division of institutions of healthcare and social protection makes it difficult to form a range of necessary medical and social measures involved in palliative care and thus such a system altogether.

The problem of access to effective relief from pain and achievement of maximum comfort for the patient remain unresolved. Current State policy on fighting drug addiction and control over the use of narcotic substances considerably impedes the availability of opiate analgesics which are the most effective medication for pain relief. Numerous inadequacies in the normative legal base which regulates these issues restrict doctors’ ability to prescribe such drugs in the necessary amounts and forms. This is especially the case for patients who are not suffering from oncological diseases, for use in inpatient institutions of the system of social protection, and at home.

At the present time due to the existence of a huge number of normative legal acts for regulating the use of opiate analgesics (around 30 legal acts), there are double-ups as well as legal collisions which complicate the use by doctors of such norms.

To receive opiate analgesics patents encounter a number of problems of both a legal and practical natures. These include the following.

1. The link with an administrative district. This is particularly difficult for rural areas due to the distance from the district centres where the necessary doctor sees patients;
2. The lack of a mechanism for transferring a patient and information about him/her from one healthcare institution to another. Often relatives take the patient to their home to ensure the necessary care. In such cases there is a problem in receiving opiate analgesics if the place where the person is registered as living does not coincide with the actual place of residence.
3. It is problematical to get to see a doctor, due to the latter’s times for seeing people and huge queues;
4. Problems with writing prescriptions for opiate analgesics. In the case of people suffering from chronic pain, prescriptions of such drugs are also examined by a commission to determine whether their use is expedient.
5. The lack of norms binding the doctor to prescribe opiate analgesics. Doctors don’t fall over themselves to write such prescriptions, since there are no clear legislative norms making prescription of such drugs compulsory where asked for by the patient without hesitation, consideration, calling a commission etc.  Prescribing these drugs involves them in a lot of work because of the responsibility involved which leads to them not prescribing them in the majority of cases.
6. The problem of authorization of a prescription. The system is overloaded with stamps (the doctor and the healthcare institution), signatures (the doctor and the head of the institution), decisions (the commission on the expediency of prescribing opiate analgesics) and getting them agreed.
7. The link with an administrative district in actually getting the prescribed opiate analgesics, this adversely affecting the provision for these people with the drugs.
8. An inadequate number of chemists issuing opiate analgesics. The use of these drugs is excessively controlled by the State. Chemists, including private ones, have no interest in issuing opiate analgesics because it is linked with many specific features as regards receipt, storage, sale and record. Furthermore, constant checks by controlling bodies endeavouring to make capital out of infringements (even when there are none). This leads to people having to go far to find a chemist with the appropriate licence to issue opiate analgesics.
9. Problems where the pharmacist doesn’t read the prescription for opiate analgesics correctly leading to wrong issue and considerable mix-ups.
10. The problem of use of opiate analgesics since according to Ministry of Health Order No. 356 this is up to medical personnel and even an oral dose should only be taken in the presence of medical staff. This means that a person or his/her relatives in the case of need cannot themselves apply them.
11. The lack of additional forms of opiate analgesics (plaster, syrup, etc) which makes it impossible for them to be applied without assistance.

We see that the right of patients to freely choose their doctor, healthcare institution and form of treatment are in no way observed.

To observe patients’ rights and international norms of palliative care, a programme for such care needs to be drawn up and passed together with a single normative legal act to regulate the use of opiate analgesics.

On 23 February 2007 there was an extended meeting within the Ministry of Employment and Social Policy of the Inter-departmental working group on improving legislative acts on the development of palliative care.

The conceptual principles for the formation of a system of medical and social care and palliative care, including for the elderly, should, according to the former Minister of Employment and Social Policy M. Paliyev be as follows:

1)  Medical and social care and palliative care should become a vital and integral part of the system of healthcare and social protection;

2)  The financing of institutions providing medical and social care and palliative care should be adequate and the same regardless of their field or their form of ownership;  

3)  In all higher educational institutions courses in care and palliative care should be included in training not only of medical staff, but also for social workers.

4)  Involvement of private structures, civic associations and volunteers in programmes of medical and social care and palliative care, is one of the necessary conditions for ensuring its accessibility, effectiveness and results. The government must support the work of such organizations where they concentrate their efforts on providing medical-social, psychological, legal assistance, as well as moral and spiritual support for patients and their families.

The following problems are among those hampering the development of medical and social care and palliative care:

­  Inadequate awareness by politicians and public officials of the scale of the problem with this getting worse;

­  The lack of formulated government policy on the development of medical and social care and palliative care, both for the elderly and young patients, as well as children with incurable diseases;

­  Insufficient integration and coordination of the work of institutions and structures of the Ministry of Health, Ministry of Employment and Social Policy, private structures and civic associations on issues regarding social and palliative care.

­  The lack of resources and use of outmoded and ineffective models of palliative care.[16]

4.  Recommendations

1)  Ensure a clear legal definition of “medical care”, “medical services”, “medical practice” and “auxiliary services in health care”

2)  Set out a list of medical services and medicines and other products with a medical purpose, the cost of which is either not covered or is only partially covered by the State Budget; defining how patients can share a role in paying for such medical services, medicines and other products with a medical purpose

3)  Set out standard conditions for the provision of medical services (the number of wards in a hospital, the level of comfort in standard wards, the provision of medication, inputting into a National List of main (vital) medicines and other products with a medical purpose, etc).

4)  Improve regulation of the procedure for ensuring the right to freely choose ones doctor or health care establishment. Define clear procedure for free choice and change of primary care doctors.

5)  Establish clear medical and legal criteria for hospitalization, refusing to hospitalize somebody; treatment and discharge from hospital.

6)  Urgently improve Ukraine’s legislation regarding the development of legal mechanisms for financing the system of health care.

7)  In making amendments to the Constitution, change Article 49 in order to guarantee the right to court protection where infringements have occurred.

8)  Define at legislative level a base model for organizing medical funding: i) funding from the State and local budgets; ii) mandatory social health insurance; and iii) medical insurance on a civil agreement basis..

9)  Create a network of palliative care units and hospices in accordance with Ministry of Health Order No. 866 from 27 December 2007.

10)  Introduce the necessary legislative amendments and pass subordinate acts regulating the work of hospices (Regulations on hospices, Regulations on the director of a hospice, regulations for nurses working in palliative care, etc) for all patients needing palliative care.

11)  Create within the Public Councils of the Ministry of Internal Affairs, the Central Department and regional departments of the MIA working groups to investigation the level of medical care and observance of patients’ rights in penal institutions and pre-trial detention centres (SIZO), draw up recommendations of ways of improving the level of healthcare and observance of the rights of those detained and where necessary make proposals on changes in legislation and departmental normative legal acts .

12)  Create under the Central Departments of Health of Regional Administrations “ethics committees” including representatives of doctors’ and patients’ human rights organizations. The Regulations on the work of these committees should be drawn up taking into account world experience on regulation by the medical community of ethical issues in the medical sphere.

[1] Prepared by Andriy Rokhansky, KHPG, Volodymyr Yavorsky, UHHRU and Maxim Shcherbatyuk, UHHRU

[2]  Law No. 997 from 27 April 2007 “On amending or declaring void some legislative acts of Ukraine in connection with the adoption of the Civil Code”, http://zakon1.rada.gov.ua/cgi-bin/laws/main.cgi?nreg=997-16.

[3] More information in Human Rights in Ukraine – 2006 http://helsinki.org.ua/en/index.php?id=1187338505 and Vinnytsa Doctor’s victory over three ministries  http://khpg.org.ua/ru/index.php?id=1156207989 ..

[4]  Ethical Principles for Medical Research Involving Human Subjects, approved by the 18^th World Medical Association General Assembly in Helsinki, June 1984, and the addendum to the Council Directive № 93/42/EEC concerning medical devices, European standards ISO 14155-1:2003 “Clinical tests on medical equipment used on humans”

[5] Draft Law № 1132 from 6 December 2007, available on the parliament website  http://gska2.rada.gov.ua/pls/zweb_n/webproc4_1?id=&pf3511=30982.

[6] Article 35 of the Charter of Fundamental Rights.

[7] Parallel Report to the UN Committee on Economic, Social, and Cultural Rights by the Ukrainian Helsinki Human Rights Union and the International Renaissance Foundation regarding Ukraine’s implementation of the International Covenant on Economic, Social and Cultural Rights // available at www.helsinki.org.ua .

[8] The State and the Citizen: Delivering on Promises”, Analysis of socio-economic policy carried out by the Blue Ribbon Commission in 2006

[9] http://unhcr.org/refworld/

[10] (see Hurtado v. Switzerland, judgment of 28 January 1994, Series A no. 280-A, opinion of the Commission, pp. 15-16, § 79).

[11] (see İlhan v. Turkey [GC], no. 22277/93, § 87, ECHR 2000-VII and Sarban v. Moldova, no. 3456/05, § 90, 4 October 2005).

[12] (see Aerts v. Belgium, judgment of 30 July 1998, Reports 1998-V, p. 1966, § 66)

[13] http://khpg.org.ua/en/index.php?id=1193420462&w=yakovenko.

[14] The case of Olha Bilyak // http://khpg.org/1096566829. The case was supported by the Fund for Professional Defence of Victims of Torture of the Kharkiv Human Rights Protection Group.

[15] This section is based on information provided by Larisa Sydelnyk and Denis Halavnev, the All-Ukrainian Council for the Protection of Patients’ Rights and Safety

[16] Ministry of Employment and Social Policy: Extended meeting of the Inter-departmental working group on improving legislative acts on the development of palliative care Press release from 22 February 2007 http://mlsp.gov.ua/.