Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care

Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions

The monitoring was performed in the course of the implementation of the National Preventive Mechanism functions by the Ukrainian Parliament Commissioner for Human Rights (2014-2017)

1 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions 1.

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Rights of People in Need of Palliative Care and International Obligations of Ukraine International Covenant on Economic, Social and Cultural Rights Convention for the Protection of Human Rights and Fundamental Freedoms European Convention on Human Rights Convention on the Rights of Persons with Disabilities European Social Charter (revised) Results of Monitoring of Palliative Care Departments (Hospices) Regarding Observance of Rights of Patients, which was Implemented by Representatives of National Preventive Mechanism of Ukrainian Parliament Commissioner in 2014-2017 3. Violation of Right to Medical Care at Health Care Institutions that Provide Palliative Care • Failure to Provide Informed Consent for Hospitalization • Violation of Right to Freedom • Absence of License for Medical Practice and Activities Related to Circulation of Narcotic Drugs, Psychotropic Substances and Precursors • Use of Narcotic Pain Relievers at Institutions that Provide Palliative Care • Lack of Mechanism for Ensuring Continuous Administration of Pain Relief Medication after Discharging Patient from In-Patient Department • Improper Care • Inaccessibility of Palliative Care • Non-relevant Functions Performed by Palliative Care Departments • Lack of Multidisciplinary Health Care Teams • Inappropriate Conditions of Stay • Non-Compliance with Right to Privacy • Inaccessibility of Legal Aid and Difficulties in Performing Notarial Acts • Burial Problems 4. Repeat Visits to Health Care Institutions that Provide Palliative Care 5. Violations of patients’ rights, which contradict the principles of palliative care 6. Violation of Rights of Patients in Need of Palliative Care from View Point of International Covenant on Economic, Social and Cultural Rights and the Convention for the Protection of Human Rights and Fundamental Freedoms 7. General Problems Preventing from Provision of Quality Palliative Care Annex 1. Beyond the Traditional: Protecting Rights of Palliative Patients Annex 2. List of Visits to Palliative Care Departments and Hospices by Region

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2 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions

1. Rights of People in Need of Palliative Care and International Obligations of Ukraine Human rights in the area of health care in Ukraine are protected by a number of ratified international instruments, notably the International Covenant on Economic, Social and Cultural Rights, the Convention for the Protection of Human Rights and Fundamental Freedoms, the Convention on the Rights of Persons with Disabilities, the European Social Charter (revised)1.

International Covenant on Economic, Social and Cultural Rights2 By joining the International Covenant on Economic, Social and Cultural Rights 3, Ukraine recognizes the right of everyone to the enjoyment of the highest attainable standard of physical and mental health (Article 12). The term highest attainable standard of health in Article 12.1 considers both the biological and socio-economic preconditions for the development of an individual and the available resources of a state.

However, there are a number of aspects that cannot be resolved exclusively in relations between states and individuals: for example, good health or protection from all possible causes of deteriorating human health cannot be provided by a state. Consequently, the right to health should be understood as the right to use a whole range of activities, services and conditions necessary to exercise the right to the highest attainable standard of health4.

Health care systems are obliged to provide5: 1. Availability of medical services in a quantity that meets demand (considering economic development of the country).

2. Accessibility of medical services, considering non-discrimination, physical and geographical access, needs of special groups (children, elderly people), access to information about existing treatment methods.

3. Acceptability of medical services in terms of ethics (consent, confidentiality), considering the needs of individuals, minorities and communities, as well as vulnerable groups of the population.

4. Quality of medical services, which are scientifically substantiated.

Principles of compliance with the obligations of states under Article 12 of the International Covenant on Economic, Social and Cultural Rights6: 1. Gradual implementation. Economic difficulties due to the limited availability of resources are recognized. This principle should not be construed as an excuse to avoid fulfillment of obligations; it means that the member-states have a concrete and permanent obligation to achieve progress as promptly and as efficiently as possible in order to fully implement Article 12. The states are required to take measures that are conscious, specific and targeted at the full realization of the right to health.

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For more details see: Human Rights in Health Care: A Practical Guide / Science editor I. Seniuta - Lviv: Publishing house Lviv Oblast Charitable Fund Medicine and Law, 2012 (Права людини в сфері охорони здоров'я: практичний посібник / За наук. ред. І. Сенюти. - Львів: Вид-во ЛОБФ «Медицина і право», 2012) 2 The International Covenant was ratified by the Decree of the Presidium of the Supreme Council of the Ukrainian SSR No. 2148-VIII (2148-08), dated October 19, 1973.

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International Covenant on Economic, Social and Cultural Rights (ICESCR). Resolution 2200A (XXI) of the General Assembly of the United Nations, 16 December 1966 - http://www2. ohchr.org/english/law/cescr.htm 4

Committee on Economic, Social and Cultural Rights, General Comment 14, The right to the highest attainable standard of health (Twenty-second session, 2000), U.N. Doc. E/C.12/2000/4 (2000), reprinted in Compilation of General Comments and General Recommendations Adopted by Human Rights Treaty Bodies, U.N. Doc. HRI/GEN/1/Rev.6 at 85 (2003).

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Ibd.

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Ibd.

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2. Prohibition of regression, that is, preventing the deterioration of the national health care system.

The core responsibilities of the States: General Comment 14 7 (extract): Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions (a) To ensure the right of access to health facilities, goods and services on a non- discriminatory basis, especially for vulnerable or marginalized groups; (d) To provide essential drugs, as from time to time defined under the WHO Action Programme on Essential Drugs; (e) To ensure equitable distribution of all health facilities, goods and services; (f) To adopt and implement a national public health strategy and plan of action, on the basis of epidemiological evidence ... giv(ing) particular attention to all vulnerable or marginalized groups.

Article 12 Some common principles. Elderly people.

25. With regard to the realization of the right to health of older persons, the Committee, in accordance with paragraphs 34 and 35 of General Comment No. 6 (1995), reaffirms the importance of an integrated approach, combining elements of preventive, curative and rehabilitative health treatment. Such measures should be based on periodical checkups for both sexes; physical as well as psychological rehabilitative measures aimed at maintaining the functionality and autonomy of older persons; and attention to and care of chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.

Remedies and accountability 59. Any person or group victim of a violation of the right to health should have access to effective judicial or other appropriate remedies at both national and international levels. 30 All victims of such violations should be entitled to adequate reparation, which may take the form of restitution, compensation, satisfaction or guarantees of non-repetition. National ombudsmen, human rights commissions, consumer forums, patients' rights associations or similar institutions should address violations of the right to health.

61. Judges and members of the legal profession should be encouraged by States parties to pay greater attention to violations of the right to health in the exercise of their functions.

62. States parties should respect, protect, facilitate and promote the work of human rights advocates and other members of civil society with a view to assisting vulnerable or marginalized groups in the realization of their right to health.

Convention for the Protection of Human Rights and Fundamental Freedoms8 Article 2. Right to life 1. Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law.

Article 3. Prohibition of torture No one shall be subjected to torture or to inhuman or degrading treatment or punishment.

Article 5. Right to liberty and security 1. Everyone has the right to liberty and security of person. No one shall be deprived of his liberty save in the following cases and in accordance with a procedure prescribed by law: e) the lawful detention of persons for the prevention of the spreading of infectious diseases, of persons of unsound mind, alcoholics or drug addicts or vagrants.

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Committee on Economic, Social and Cultural Rights, General Comment 14, The right to the highest attainable standard of health (Twenty-second session, 2000), U.N. Doc. E/C.12/2000/4 (2000), reprinted in Compilation of General Comments and General Recommendations Adopted by Human Rights Treaty Bodies, U.N. Doc. HRI/GEN/1/Rev.6 at 85 (2003).

8 The Convention was ratified by Law No. 475/97-VR of 17.07.97. Similar provisions can be found in the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment; International Covenant on Civil and Political Rights; Convention on the Rights of Persons with Disabilities

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Article 6. Right to a fair trial Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions 1. In the determination of his civil rights and obligations or of any criminal charge against him, everyone is entitled to a fair and public hearing within a reasonable time by an independent and impartial tribunal established by law.

European Convention on Human Rights Article 3. Prohibition of torture No one shall be subjected to torture or to inhuman or degrading treatment or punishment.

Convention on the Rights of Persons with Disabilities9 Article 3. General principles The principles of the present Convention shall be: a) Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons; b) Non-discrimination; c) Full and effective participation and inclusion in society; d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; e) Equality of opportunity; f) Accessibility; g) Equality between men and women; h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

European Social Charter (revised)10 It determines that countries ratifying this document, with a view to ensuring the effective implementation of the right to health, undertake, either alone or in cooperation with public or private organizations, to take appropriate measures: • if possible, to eliminate the causes of poor health; • to ensure the activities of advisory and educational services that will contribute to health improvement and increase in personal responsibility for one's health; • to prevent, as far as possible, epidemic, endemic and other diseases, as well as accidents.

Thus, in Ukraine, the recommendation of the General Comment 14 of the Committee on Economic, Social and Cultural Rights (Remedies and accountability, para 9) is implemented, and the Ukrainian Parliament Commissioner for Human Rights is engaged in combatting violations of the right to health.

National preventive mechanism11 Torture and ill-treatment are a shameful phenomenon in the modern world. For many decades, the international community has been struggling to resolve this problem by adopting various legal instruments to combat torture and creating the appropriate institutional mechanisms to ensure that these functions are carried out. The national preventive mechanism provided for in the Optional Protocol to the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment 12, which was adopted on 9

The Convention was ratified by Law No. 1767-VI, dated December 16, 2009.

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The Charter was ratified with statements by Law No. 137-V, dated September 14, 2006.

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http://www.ombudsman.gov.ua/ua/page/npm/

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Beyond the traditional: protecting the rights of palliative patients – see Annex 1.

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December 18, 2002, is a relatively new approach, which, however, has already proven its effectiveness in preventing torture and ill-treatment. The main idea of the national preventive mechanism is the introduction of a system of regular, independent visits to any place under the jurisdiction and control of the Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions state, where persons deprived of their liberty are held or may be held, by the order or at the direction of a public authority, or with its knowledge or tacit consent. These visits are carried out in order to strengthen, if necessary, the protection of such persons from torture and other cruel, inhuman or degrading treatment or punishment. Monitoring visits to places of deprivation of freedom by independent experts have a deterrent effect on public authorities and, accordingly, minimize the risk of becoming victims of ill-treatment and torture.

As it is known, Ukraine ratified the Optional Protocol on July 21, 2006. A draft Law of Ukraine On Amendments to the Law of Ukraine 'On the Ukrainian Parliament Commissioner for Human Rights' Regarding the National Preventive Mechanism by which the Commissioner was assigned with the functions of the national preventive mechanism was adopted on August 09, 2012. The mentioned Law was adopted by the Ukrainian Parliament on October 02, 2012 and came into force on November 04, 2012.

Following a public discussion with the participation of well-known national and international experts, it was decided to introduce a national preventive mechanism in the format of Ombudsman + in Ukraine, which provides for monitoring visits to places of deprivation of freedom by employees of the Ombudsman's office in cooperation with civil society activists.

A specialized structural unit – the Department for the Implementation of the National Preventive Mechanism – was established within the new structure of the Secretariat of the Ukrainian Parliament Commissioner for Human Rights on May 25, 2012.

6 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions 2. Results of Monitoring of Palliative Care Departments (Hospices) Regarding Observance of Rights of Patients, which was Implemented by Representatives of National Preventive Mechanism of Ukrainian Parliament Commissioner in 2014-2017 The monitoring took place in 19 regions of Ukraine13.

Number of completed visits to: hospices – 10, palliative care department (beds) – 33.

Total: 46 institutions, of which 7 repeat visits.

The monitoring visits were performed by employees of the Department for the Implementation of the National Preventive Mechanism (hereinafter referred to as the NPM) of the Secretariat of the Ukrainian Parliament Commissioner for Human Rights, regional representatives and public relations coordinators of the Commissioner for Human Rights, jointly with public monitors.

Let's consider in more detail the specific problems of provision of palliative care at health care institutions.

In our study, we focused on the definition of palliative care by the WHO, in particular: Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Article 35-4 of the Bases of the legislation of Ukraine on Health Care and Order of the Ministry of Health No. 41, dated January 21, 2013, On Arrangement of Palliative Care in Ukraine also regulates the provision of palliative care.

3. Violation of Right to Medical Care at Health Care Institutions that Provide Palliative Care Failure to Provide Informed Consent for Hospitalization From among the basic rights that patients have in terms of obtaining health care and medical services, we have analyzed the observation of the right to informed consent of a patient for diagnostics, treatment, including surgical interventions and pain relief.

Here are some examples of violations of this right: 1. In violation of Paragraph 3.1 of the Procedure for Providing Palliative Care, approved by Order of the Ministry of Health, dated January 21, 2013, No. 41, patients shall be sent to a hospital's palliative care department following the application of children, a niece, a godchild, etc. Thus, the in-patient record of G., who was hospitalized at the Lviv City Hospital «Hospice» on the basis of her daughter's application, there was a legal representative consent for hospitalization in order to provide palliative care in the in-patient settings and a voluntary informed consent of the patient signed not by the patient, but her legal representative.

Although, in accordance with the Instruction on Filling-In the Form of Primary Registration Documentation No. 003-6/o, which was approved by Order of the Ministry of Health No. 110, dated February 14, 2012, informed consent shall be signed by the patient, who applied to a health care institution and agrees to undergo diagnostics and treatment.

2. The patient record of K. has informed consent for medical intervention, but it is drawn up in an arbitrary form, not in accordance with Order of the Ministry of Health No. 110, dated February 14, 2014, the form of the primary registration documentation No. 003-6/о (informed voluntary consent of the patient for diagnostics, treatment, surgery and pain relief). There were no samples of this form in the central district hospital's departments.

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See Annex 1.

7 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions 3. In the hospice department of the Ulyanivka Rural District Hospital of the Bilopillia Central District Hospital in the Sumy Region, the practice was detected, where the forms of informed consent were filled in and signed not by the patient but by a physician. After the comment of the monitoring group information on the corrective measures was sent within three days: in particular, informed consent forms were re-issued and signed by the patients themselves.

4. In the hospice department (village of Mazynky) of the Putyvl Central District Hospital in the Sumy Region, cases were detected, where informed consent forms were signed not by the patient but by a third party. Moreover, an elderly patient, who did not want to stay at the department, where she was placed by her adoptive son, was identified. She requested the members of the monitoring group to return her home.

5. The scrutiny of in-patient medical records provided by the staff of the Palliative Department of the Kropyvnytskyi Central City Hospital revealed that half of them were not signed by patients.

Violation of Right to Freedom The lack of a duly drawn up informed consent for treatment led to a violation of the right of a seriously ill patient with stage IV oncological disease to the extent of deprivation of her right to liberty – she was unlawfully detained at the Hospice Department of the Vynohradiv Geriatric Boarding House.

Initially, the patient and her relatives were misled by the statement that that geriatric boarding house was a health care institution, where she would be provided with medical services. When it turned out that only social care services for palliative care could be provided to the patient there, she wished to be discharged from the institution, and her daughter agreed to transfer her to another health care institution. The Vynohradiv Geriatric Boarding House, as a social care institution, did not have a license for circulation of narcotic and psychotropic drugs that the patient needed because of her seizures. When an ambulance arrived to transfer the patient to another institution, the staff of the Vynohradiv Geriatric Boarding House refused to release the patient and held the sick person by force. The patient herself showed a desire to leave the institution, but she could not leave it on her own due to her poor health. As it turned out later, the boarding house's director personally did not allow her to leave the institution.

The declared reason why the patient was held by force was a non-payment of bills for treatment at the hospice.

The office of the Ombudsman of Ukraine initiated a proceeding and sent an appeal to the Mukachevo District Prosecutor's Office, which opened a pre-trial investigation of the fact of an illegal deprivation of liberty of the seriously ill woman.

Absence of License for Medical Practice and Activities Related to Circulation of Narcotic Drugs, Psychotropic Substances and Precursors Such institutions as Saint Helena Hospice, a shelter for elderly people in the village of Shchorsivka in the Zhytomyr Region, the Charitable Establishment Archangel Michael Hospice (Zaporizhia) and Hospice in Chasiv Yar (Donetsk Region) that provide palliative care, did not have any licenses for medical practice at all14. These institutions were not classified as communal property; in fact, they provided care of people in need of third- party care. For example, there were people, who were brought from the temporarily uncontrolled territory of Ukraine and did not have any documents at Hospice in Chasiv Yar. The private institution not only provided them with care, but also renewed their documents and then transferred them to social welfare institutions. Among the ten persons, who were there at the time of the visit, one woman had a severe condition and needed pain relief. Manager of the institution explained that there was an agreement with a family physician who visited her regularly. If necessary, painkillers should be provided by a town hospital.

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At the time of monitoring visits.

Although such an institution actually provided social services, but there was no other institution in the northern part of the Donetsk Region at the time of the monitoring visit.

8 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions A special status was detected at the Vynohradiv Geriatric Boarding House – it was financed out of the Zakarpattia Region's budget as a social welfare institution, but in 2017 it received a license for medical practice, which it did not use.

Lack of a license for circulation of narcotic drugs, psychotropic substances and precursors contradicts the requirements of Order of MOH, dated January 21, 2013, No. 41 On Arrangement of Palliative Care in Ukraine, which states that palliative care shall be provided by health care institutions on condition that the health care institution has a certificate of state accreditation, licenses of the Ministry of Health to conduct the following economic activities: medical practice; circulation of narcotic drugs, psychotropic substances and precursors.

Use of Narcotic Pain Relievers at Institutions that Provide Palliative Care As noted above, the availability of a stock of narcotic drugs is critical to designating the institution (or failing to do so) as the one where patients receive palliative care. If a department (institution) does not have a stock of narcotic pain relievers at all (or just has a scanty stock – 2 ampoules per 70 patients), this department (institution) is 99% likely to act as an inpatient social welfare institution despite the availability of a license for circulation of narcotic drugs and precursors.

Figure 1 shows the number of considered palliative care departments, which have stocks of narcotic drugs.

■ USE □ DO NOT USE

Notes: Black color – departments and institutions that use narcotic and psychotropic drugs in their practice (68%). Gray color – those that do not use them (32%).

Here are examples of monitoring the departments that did not have stocks of narcotic pain relievers (32%): • At the time of monitoring, at the Hospice Department of the Kyiv City Clinical Hospital No. 10 (designed for 70 beds), there were no patients, who have been prescribed narcotic drugs. However, two ampoules of narcotic drugs were stored in a safe.

• At the Hospice Department of the Staryi Sambir District Hospital in the village of Nyzhankovychi (Lviv Region), opioid painkillers were not stored at the department, although all the conditions for the storage of such drugs were created at the institution. In case a patient experiences a pain syndrome, a nurse would go to the district center and receive the necessary medicines.

• At the department, there was a room equipped with an alarm system and a safe for storing potent opioids. Considerable funds were spent to equip this room, which was fully barred from the inside and has a barred door from closes from the outside; it was also equipped with an alarm system. However, there were no

drugs in a safe. In two years of the department's operation, no opioid painkillers had ever been used. (Putyvl, Sumy Region).

9 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions

• The records in the log on the issuance of medicines at the Hospice and Palliative Care Department of the Yablunytsia District Hospital (Ivano-Frankivsk Region) showed that injections of morphine hydrochloride were administered to patient B. (at first one and subsequently two ampoules). But due to the lack of such a medicine at the hospital, one day the patient did not receive any pain relief at all.

Lack of Mechanism for Ensuring Continuous Administration of Pain Relief Medication after Discharging Patient from In-Patient Department It is clear that if a patient received narcotic pain relievers at a palliative department due to chronic pain syndrome they should keep on using drugs at home as well. Narcotic drugs administration interruption will cause the patient to experience pain and suffering.

Almost all hospices and palliative care departments did not practice writing prescriptions for narcotic drugs to patients at discharge from the institution.

Health care institutions operate according to the following scheme: a patient leaves the institution, applies to a health care institution, that is, a polyclinic, at their place of residence – only then the patient receives the necessary medicine. However, the cases witnessed at the Palliative Care Department of the Mukachevo District Hospital (Zakarpattia Region) indicate that this scheme works with delay. The time interval from a discharge from the hospice to receiving a prescription can be very long, which violates all the rules of rational use of pain medication.

Almost all (except one) representatives of medical institutions (physicians) who were interviewed during the visits indicated that there was no need to prescribe narcotic drugs for patients, who were discharged home. However, the «cases» in Vatutino (Cherkasy Region) and at Polyclinic No. 1 in the Dniprovsky District in Kyiv15 refuted these claims and confirmed the opinion that the mechanism of prescribing narcotic drugs to patients discharged from a palliative or oncological department is very much needed – back home, these patients are left alone with their problem.

Medical institutions that provide palliative care do not practice prescribing pain management drugs to comply with the principles of palliative care in terms of accessibility, continuity and consistency.

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There are respective appeals to the Ombudsman’s secretariat.

10 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions

Improper Care Junior and medium-level medical personnel at the Palliative Care Department of the Drohobych District Hospital No. 2 in the village of Rychtychy (Lviv Region) failed to provide care of patients (they were not shaved and their finger- and toenails were not trimmed). For example, patient G.'s sister trimmed his nails, as they ‘did not want to disturb the department's staff’.

The established schedules do not take into account the needs of palliative care patients Order of the Chief Physician of the Kirovohrad Central City Hospital, dated May 15, 2017, No. 167, which approved the rules for in-patient stay, was placed at the entrance to the palliative department. These rules determined the schedule, according to which patients should get up at 06:00, and their visit time was limited to two hours: from 14:00 to 15:00 and from 18:00 to 19:00. Not to mention that the schedule was inconvenient for working visitors, it was completely unacceptable for palliative care patients.

Palliative care patients shall get up at 06:00 This made it impossible for family members to provide proper support, in line with the Recommendation Rec (2003) 24 of the Committee of Ministers of the Council of Europe On the Organization of Palliative Care; support of the family and the use of opportunities for family members to provide moral and practical support to the patients and to participate in providing care is among the four main components of palliative care.

Palliative care patients, according to the schedule, not only had to get up at 06:00, but also had to carry

out daily morning exercise, as it was indicated in a department schedule at the rural district hospital in the township of Mykolaivka.

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Inaccessibility of Palliative Care Examples of violations: 1. The Lviv City Hospital «Hospice» provided palliative care only to patients who had relatives who signed legal representative consent for hospitalization in order to provide palliative care in the in-patient settings. In accordance with this consent in case of the patient's death relatives were obliged to take care of their burial.

2. Mukachevo Central District Hospital. Regardless of the availability of the hospice department a palliative care patient who needed prescription of narcotic drugs and pain treatment had to be hospitalized only at the Oncological Department (provided there were vacant beds) to relieve a pain syndrome.

3. The site of the Palliative Medicine Department of the Dubno Medical College (Rivne Region) 16 listed indications and contraindications for hospitalization, including social and domestic contraindications, namely: persons without a permanent place of residence and registration, as well as singles (as an exception these people can be hospitalized if along with their placement there was a letter of guarantee from the organization, institution, enterprise, etc., which undertook an obligation to take care of burial in case of person’s death).

4. The Palliative Care Department of the Communal Enterprise Kirovohrad Central City Hospital was designed for 15 beds, 10 more ‘palliative care’ beds were at the two Therapeutic Departments of this hospital.

In 2016 323 patients were treated within these 10 beds at the Therapeutic Departments, while the Palliative Care Department having 1/3 more beds provided care only to 180 people. With due account of the fact that the Palliative Care Department was opened in March 2016 and operated 9 months in 2016, about 20 people were treated on 15 beds each month, while the Therapeutic Departments treated about 27 people a month using 10 palliative care beds. It seems that the department was available not for everyone, since during the visit there were only 7 persons in the department and 8 beds were vacant.

The abovementioned facts do not meet Recommendation Rec (2003) 24 of the Committee of Ministers of the Council of Europe to Member States On the Organization of Palliative Care, which states that ‘Specialist palliative care should be available for all patients when they need it, at any time and in any situation.’

Non-relevant Functions Performed by Palliative Care Departments 1. The palliative care department was also a sobering station at the Center for Medical and Social Rehabilitation of Mariupol City Hospital No. 10 (Donetsk Region).

2. There were cases of other uses of palliative care departments. In the course of the NPM’s visit it was found that the Palliative Care Department of Kyiv City Hospital No. 10 at times accepted homeless people, who were denied treatment at other medical institutions of the city. These were not always palliative care patient, but none of the services and medical institutions in the city was willing to care of and treat the homeless. Therefore, palliative care departments sometimes have the responsibility to take care of and treat such patients.

3. There were elderly people who did not need palliative care for health reasons at the Hospice Department of the Ulyanivka Rural District Hospital (Sumy Region). Thus, the medical records of patients showed that of the department's 32 patients 23 had a diagnosis of cerebral atherosclerosis; one patient had been undergoing treatment of closed fracture of the collarbone, others had residual effects of myocardial infarction, etc. The analysis of medication administration records showed that during the visit there were

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http://dubnohospis.ucoz.ua/index/pokazi_dlja_gospitalizaciji/0-6

patients, who were prescribed medicines only related to respiratory diseases, which could not (as listed above) be attributed to the terminal stages of diseases.

12 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions 4. The Palliative Care Department of the Drohobych District Hospital No. 2 in the village of Rychtychy (Lviv Region) was not in line with its purpose, since it exercised social functions, but did not take care of patients, who needed medical and psychological support in the last days of their lives. Some patients had been staying at the hospital for years, while only dietary nutrition was highlighted in their treatment indications.

5. There were elderly people, who needed social rather than palliative care at the Hospice Department of the Sokal Central District Hospital (Lviv Region). Thus, the medical records of patients showed that five patients did not need any medicine: their medication administration records indicated only one thing – in-patient care. The social service of in-patient care should be provided at social welfare institutions, while hospices should provide in-patient palliative care services.

Lack of Multidisciplinary Health Care Teams Availability of multidisciplinary teams, which include a psychologist, a social worker and a chaplain is one of the components of palliative care.

For example, in the hospice department of the Putyvl Central District Hospital in the Sumy Region, there was a room for ‘psychological venting’, but there was no staff psychologist and due to the remoteness of the institution it was not possible to receive services of such a specialist.

Figure 2 shows the number of specialists, who provide social and psychosocial support for palliative care patients

The quantitative analysis of psychosocial support specialists proves that spiritual support was the most wide spread form of support, even in those cases when palliative care departments did not have ritual rooms and rooms for prayers. At the same time, according to employees, priests of various denominations visited patients at their wish and as needed.

The foregoing contradicts Resolution 67 of the World Health Assembly, which states that Member States need to develop, strengthen and implement, as appropriate, policies on the organization and provision of palliative care as an integral part of health care systems for the integration of scientifically sound, cost-effective and unbiased palliative care services to the health system at all levels.

Therefore, it is desirable, in our opinion, that in the future palliative care shall become an important part of the system of health care and social welfare of Ukrainian citizens and ensure the realization of the rights of patients for a dignified end of life and the maximum reduction of pain and suffering.

13 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions Positive example: On the other hand the Palliative Medicine Department of the Kyiv City Oncological Hospital, which had two structural and functional units – an in-patient unit (25 beds) and a patronage service – was the closest to the world and European standards in terms of work organization, provision of palliative care and conditions for the stay of incurable patients. The inextricable functioning of the department's patronage service and inpatient unit made it possible to keep the condition of the oncological patient with the IV clinical group constantly under control, to correct the treatment and, if necessary, to hospitalize them to the in-patient unit.

Inappropriate Conditions of Stay Undoubtedly the quality of life of palliative care patients is impacted by conditions of their stay at health care institutions.

In Figure 3 we have conventionally divided the conditions of stay into ‘Satisfactory’, ‘Moderately Satisfactory’ and ‘Unsatisfactory’

60% of the institutions were characterized by satisfactory conditions of stay according to the criteria established by the monitoring groups.

Unfortunately, however, 20% were ranked as ‘Moderately Satisfactory’ and 20% as ‘Unsatisfactory’.

Due to the fact that there are no standard provisions about hospice and a palliative care department (ward), there are no requirements to their premises and equipment. Therefore we were using a subjective assessment of the conditions of stay in general, from the point of view of ‘preserving the quality of life of patients’ and taking into account the fact that palliative care patients may have limitations in movement and the possibility of self-care (can have special needs).

Institutions with unsatisfactory conditions of stay were those, where patients were personally neglected: were kept on dirty beds, had no diapers, some patients were unreasonably isolated, the beds were not functional (metal mesh base beds), the air had a persistent smell of faeces and urine.

Special case: In the course of the monitoring the air temperature in the wards was from +14 to + 15° С. With the temperature being that low patients had only thin sheets. Not a single extra sheet was issued to anyone. Only patients who had relatives had two sheets.

Beds in the wards were of two types: tilting (surgical) beds and beds with a metal mesh base. As a rule, metal mesh beds were placed on the second floor, where there were persons without a permanent place of residence. The rooms on the second floor were out of repair and dirty. Patients using wheel chairs who stayed on the second floor had no access to fresh air. This is an evidence of a biased attitude of medical staff

towards some groups of people in the hospice, namely to the homeless, as well as to people, who were released from places of deprivation of liberty.

14 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions In the corridors linoleum was damaged and patched. In the wards spider webs hang above and below the beds. In some wards wash basins were dismantled and laid on the floor.

For a long time there was no hot water available and it was unknown when it would be running again. There were two boilers donated by volunteers, but they were not yet connected.

This case is already on the brink of violation of the European Convention on Human Rights with regard to the prohibition of cruel, inhuman or degrading treatment.

Special case: The palliative care department did not provide patients with bed linen, clothes and hygiene products. In cases where a patient was not able to provide their own bed linen the staff used things left from patients, who died earlier.

Special case: When communicating with patients both at the oncological and hospice departments, they argued that even though there was a well-equipped sanitary room (there were showers, a washbasin, constantly running hot water), it was impossible to wash there, because it was very cold in that room. The institution's administration explained that patients were allowed to go home on weekends so they could wash there.

Special case: The Center for Medical and Social Rehabilitation of City Hospital No. 10 of the Mariupol City Council was simultaneously both: a palliative care department and a sobering station: the Medical and Social Rehabilitation Department – 15 palliative patient beds and the Department of Medical and Social Rehabilitation of Persons in Alcoholic Intoxication – 5 beds, had the same staff.

According to the Chief Physician of Mariupol City Hospital No. 10, at the time of the visit of the monitoring group of the Secretariat of the Ukrainian Parliament Commissioner for Human Rights, there were 10 patients in the department. Of these, 9 patients were residents of the city, including 2 resettlers from the temporarily occupied territories in the Donetsk Region (Makiivka) and 1 rural resident from the town of Volnovakha. The monitoring group saw only 5 such patients in the department; two more women were in a room of the Department of Medical and Social Rehabilitation of Persons in Alcoholic Intoxication (in the sobering station section), because, according to the duty physician, ‘they can knock’ (the departments were separated by a dividing wall). According to the physician, all other patients were released home. The duty physician did not know either the number of patients or their illnesses (although there were only seven patients in the Center); the junior nurse could not explain how the patients were washed.

During the visit to this Center there was a dirty man lying on the ground in the rain in a state of intoxication two meters away from the institution. Only after the arrival of the Chief Physician of City Hospital No. 10 the man was carried to the Center. Besides there was another person lying on the corridor floor in an extremely unattractive way at the entrance to the department.

Non-Compliance with Right to Privacy The right to privacy is important, as patients stay at a hospital for a long time: At the entrance to the palliative care institution there was a warning sign stating that the hospital was under video surveillance.

The monitoring visit revealed that video cameras were located only in the corridors but not in the wards.

However, there is no regulation covering the activity of such type of medical institution as the palliative care hospice department, with regard to the use of video surveillance in particular.

Another example of the right to privacy violation: there were no folding-screens in the wards that should be used to ensure the right to privacy in case of going to the toilet, performing sanitary procedures for

lying patients, as well as in case of death of a patient. Such facts were detected at the Palliative Care Departments in the townships of Mykolaivka and Ulyanivka of the Bilopillia Central District Hospital, hospice department of the Putyvl Central District Hospital – in the Sumy Region.

15 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions Criteria. Institutions with moderately satisfactory conditions of stay were referred to this category on the basis of such shortcomings: 1. The entrance to the hospital was not equipped with a ramp. The institution did not have an elevator and other means adapted for sedentary persons to move between the floors. Persons moving on wheelchairs could not move outdoors; the only thing they could do was to move on their own on their floor. There were no conditions for unobstructed access of low-mobility population groups; the conditions did not meet the requirements of the State Construction Standards of Ukraine (DBN V2.2-17:2006) Buildings and Structures.

Accessibility of Buildings and Structures for Low-Mobility Population Groups.

2. Doorways in the wards were not properly equipped to ensure unobstructed access for low-mobility patients; thus they did not meet the requirements of the State Construction Standards of Ukraine, namely, paragraph 6.1.11. of DBN V.2.2-17:2006 Buildings and Structures. Accessibility of Buildings and Structures for Low-Mobility Population Groups, which specifies that doorways shall not have thresholds and there shall be no height differences of floors. If it is necessary to have thresholds, their height or height difference shall not exceed 0.025 m.

3. The building was inaccessible to sedentary groups of patients: the entrance to the building required to go downstairs, then upstairs to the 3rd or 4th floor of the building, which had no elevator or any other means for lifting patients to the department (the building was about 150 years old). For this reason, seriously ill patients were carried to the 3rd floor by staff and relatives on stretchers and in hammocks.

4. Patients were not allowed to stay in the walk-in yard because of the inaccessibility and inadequacy of the premises for the needs of sedentary patients and the lack of means for moving between floors.

5. The wards did not have individual cabinets for clothes; clothes was stored in common cabinets in the corridor.

6. Due to the lack of toilet chairs, adapted chairs and buckets with lids were used, which were uncomfortable for use; stools were used as bedside tables (the departments in the townships of Mykolaivka and Ulyanivka).

7. The department did not have rooms for relatives to stay at night.

8. Bedside call buttons were provided but were not functioning. The medical staff pointed out that patients could not physically use them, and therefore those buttons had no practical use, which led to their disabling. As a result, patients developed their own practice of calling medical staff if needed (by voice, by knocking a spoon upon metallic objects).

9. There were no special conditions for patients with special needs in the toilet on the floor (patients on wheelchairs could not use a stationary toilet). However, the mentioned problem for the sedentary patients was compensated by special chairs with sanitary containers, which were there in sufficient quantity.

16 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions

10. Lack of opportunity to walk in the fresh air. Most patients did not go outdoors for a walk because elevators in the hospital buildings were out of order. At the same time, for example, the Hospice Department of the Rural District Hospital (RDH) in the township of Ulyanivka was located on the second floor; the Therapeutic Department of the RDH in the township of Mykolaivka of the Bilopillia Central District Hospital in the Sumy Region – on the third floor. The same situation was at the Palliative Care Department of the Marhanets City Hospital: the department on the second floor did not have an elevator. The Palliative Care Department of the Dnipropetrovsk City Hospital No. 15 was located on the third floor of the department where there was an elevator, but at the time of the visit it did not work.

11. In the walk-in yard, there were uncomfortable and sloping benches without backs, which was uncomfortable for the elderly people. There were no coverings from atmospheric precipitation and sunlight.

There were lavatories, one of which was stocked with building materials and brooms, while the other did not have doors.

Inaccessibility of Legal Aid and Difficulties in Performing Notarial Acts Patients, who have a palliative status, are particularly vulnerable to abuse by criminally-minded individuals at the end of their lives taking into account their health. Palliative care patients are experiencing the last days of their lives inside hospices and they want to sort out all their affairs, including financial ones.

Therefore, the status of legal aid provision was also the subject of the NPM monitors' investigation. It should be noted that three departments used services of a legal adviser, who was a staff member of the health care institution.

However, most medical institutions did not share the view of the importance and necessity of legal assistance for palliative care patients.

Thus, the staffing structure of one of the hospices did not have a position of lawyer. According to the administration of this institution, they did not need this position. They did not get in touch with notaries and lawyers whatsoever. The institution did not support the practice of performing any notarial acts – all of that should be done outside the medical institution. Representatives of the hospital administration assured that they did not interfere in private property cases of their patients.

At another institution, information stands gave no information about to whom and where to apply, if the rights of patients and employees were violated. There was no schedule for personal reception by the institution's head and other employees, as well as no box for complaints and suggestions.

Another example: the staffing structure of both the hospice department and the clinical hospital lacked a position of lawyer. Relatives invited a notary to perform various notarial acts on their own, with the participation of the department's head, and in his/her absence, a duty physician.

The question naturally arises: is the patient's condition taken into account when performing the notarial acts, since the will, probably, could be appealed on the basis that it has been made at the hospice under the influence of narcotic drugs?

17 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions The following answers were received: 1. Since the hospice did not have any patients, who were under the influence of narcotic drugs, therefore it was inappropriate to take this into account when performing notarial acts.

2. According to employees of another hospice, there was only one case, when they stopped administering painkillers to a patient, whose illness was not very severe, for one day; at the end of the day a notary came and signed a notarial document.

3. In other cases this problem was ignored.

Special case: The palliative department actively cooperated with representatives of the religious community. Patients, who did not have relatives, expressed their desire to issue powers of attorney to representatives of the religious community to receive their pensions. Those in their turn received pension payments, purchased foodstuffs and very often brought them (since there were no refrigerators), hygiene products, periodicals, etc.

Special case: A patient, who wished to be placed in a palliative care department, has signed an agreement with the city council for lifetime support (the facts are being verified).

Burial Problems There is no consistent practice in conducting an autopsy after the death of a palliative care patient. Some palliative care institutions after the patient's death kept the body for 2 hours, after which it was necessarily sent to an autopsy to a city morgue. However, other institutions in case of death of a patient issued a certificate of death without an autopsy. This is a very important issue for relatives of the deceased.

Lying-in rooms and premises for keeping bodies of the dead were not equipped. In places, where they were available, their condition was unsatisfactory: at the hospice department of the Putyvl Central District Hospital in the Sumy Region, there was a room for keeping bodies of the dead, but during the visit, a complete mess was detected in this room: a coffin, stretchers, old beds etc. were stored there.

4. Repeat Visits to Health Care Institutions that Provide Palliative Care As a result of each visit, letters were sent to the Ministry of Health of Ukraine and regional state administrations with recommendations on solving problems and eliminating the identified violations of patients' rights and freedoms for them to resort to appropriate actions.

In addition, in order to assess the level of implementation of the recommendations following the results of previous monitoring visits, repeat monitoring visits were performed 17.

Mukachevo Central District Hospital (Geriatric and Oncological Department) 18

17 18

This list of repeat visits is not exhausted, the annual reports contain information about other visits April 21, 2015 (repeat visit).

The repeat monitoring visit to the Geriatric Department (Hospice) and the Oncological Department of the Mukachevo Central District Hospital in the Zakarpattia Region revealed that the hospital management undertook measures to respond to the recommendations based on the results of the previous visit.

Yu.M. Holovchak, a newly appointed Chief physician, brought the medical records of the mentioned departments in compliance with the MOH standards;

18 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions provided unobstructed access to drinking water (water coolers were installed) and to the facilities to heat food being brought to patients by visitors; old windows were replaced with heat-saving ones; the sanitary rooms were equipped with chairs for washing bed patients. The issue of staffing the hospital's multidisciplinary team was being gradually solved: a specialist was hired for the position of a psychologist.

The sanitary rooms and washing facilities (shower) were equipped with chairs for people with special needs.

At the Geriatric hospice department relevant medical documentation was put in place.

However, there were still some pressing issues. Namely, the mismatch between the name of the Geriatric Department («Hospice») in the statutory documents and the understanding of the basic functions of such a department. Instead of raising the availability of skilled in-patient care of incurable oncological and chronic patients in the terminal stage, the Geriatric Department (Hospice) kept on providing services to patients mainly with chronic somatic diseases, who had been staying at the department for a rather long time.

At the same time, at the Oncological Department, provisions and recommendations of Order of the Ministry of Health of Ukraine No. 311, dated April 24, 2012, On Approval and Implementation of Medical and Technological Documents for Standardization of Palliative Care in Case of Chronic Pain Syndrome were not implemented: the medical records lacked data on the control of pain syndrome with the use of a scale that establishes the intensity of pain syndrome, data on the use of pain management drugs (non-narcotic and narcotic) for treating pain syndrome under the WHO's three-step ‘analgesic ladder’. The recommendations on the use of painkillers contained in the patient records were of generic, non-specific, nature, which complicated the prescription of an adequate pain relief scheme, including narcotic drugs, in the out-patient stage later.

Patient I. at the time of admission to the Geriatric hospice department complained about pain in the lower abdomen, in the lumbar-sacral regions of the spine. At discharge of the patient, in the absence of improvements and changes in her health, a physician recommended using painkillers (without any specifics) in her discharge summary.

The analysis of medical records of patients revealed extracts from a hospital patient record, which were issued by the Zakarpattia Regional Clinical Oncological Dispensary, which did not contain any recommendations on medicinal treatment, in particular the prescription of painkillers.

At the Geriatric Department no measures were taken to equip separate rooms for dining and food distribution; food was distributed in the corridor.

The hospice department had one ward, which consisted of three walk-through rooms shared by women and men.

In addition, the wards for 2 to 4 patients did not have medical privacy screens in case of various manipulative and hygienic procedures or in case of death of the patient.

Saint Helena Hospice

19

In accordance with the recommendations given after the first visit (June 2015), the institution prepared the statutory documents (the institution's statute, job descriptions of employees, etc.) and sent it for approval to the Red Cross Society of Ukraine. Further on, the institution planned to function as a nursing home (for the provision of services to patients with chronic somatic diseases that stay for a rather long time) rather than as a hospice (for the provision of medical care to incurable oncological and chronic patients in the closing stages of their life).

19

repeat visit on January 18, 2016

At the same time the medical records of these departments were brought in compliance with the MOH standards. In addition, information stands were manufactured.

Hospice Department of Kyiv City Clinical Hospital No. 10

20

.

19 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions According to the results of the previous visit (October 2014), it was found that the Hospice actually provided services of a nursing institution or a boarding house, since patients had been staying at the department for 2 to 3 years. Instead of providing skilled in-patient medical care to incurable oncology and chronically ill patients at the terminal stage, this department kept on providing services for patients with chronic somatic diseases that had been staying at the department for a rather long time.

Thus, the letter from G. Starostenko, Deputy Head of the Kyiv City State Administration, dated December 25, 2014, stated that at that time there were 23 persons without a permanent place of residence at the department, 15 of whom needed the renewal of their identity documents. At the time of the repeat visit to the Hospice there were as many as 29 persons without a permanent place of residence, 20 of whom needed the renewal of documents. That is the situation only worsened compared to from 2014.

The staffing structure of Kyiv City Clinical Hospital No. 10 had no positions of social worker and lawyer, who could directly resolve some of the aforementioned issues.

Since the purpose of a hospice is not only to provide medical care but also to provide a comprehensive care of a person, who is in the final stages of life, taking into account their interests and needs, then a multidisciplinary team should be involved in the achievement of the goals of hospice care, which should include, in addition to medical staff, a social worker, a lawyer, representatives of religious communities, volunteers, etc.

The health care institution was unable to help such patients in getting their pensions or social assistance. Due to the lack of identity documents, no access to pensions or social assistance, social welfare bodies refused to place such people to geriatric institutions.

In addition, it should be noted that Recommendation Rec (2003) 24 of the Committee of Ministers of the Council of Europe On the Organization of Palliative Care states ‘It should be ensured that there is leadership in the development of palliative care at national level and proper co-ordination of services’.

Palliative Care Department of the Olesko Hospital in the Busk District 21 According to the results of the first visit, which took place in September 2016, an extract from the report with recommendations regarding the elimination of the detected violations was sent to the institution by the letter dated October 31, 2016, No. 252/16-159. In response, the Commissioner for Human Rights was informed about the results of the official investigation, following which recommendations for their implementation were provided.

In addition, it was found that during the meeting of the Standing Deputy Commission of the Busk District Council on Labor, Social Protection and Public Health Issues 22, a decision was made to allocate funds for re-equipment of the department in the amount of UAH 100,000.

In the course of the repeat visit the monitoring group noted that there were significant positive changes at the department. To be more specific: the windows and doors were replaced with reinforced plastic ones, refurbishments were done in the sanitary and ritual rooms, repairs were started in the wards, some beds were replaced with multifunctional ones, the adjoining territory was improved (fruit trees were planted, grass was mowed, and old trees were cut down).

Low-quality and low-calorie meals were among the main outstanding problems, since UAH 7.45 (including UAH 3.09 of charitable funds) was spent for one patient a day. The menu included only soups of 20 21 22

repeat visit on March 02, 2016 21 repeat visit on July 20, 2017 http://busknew.blogspot.com/2016/09/blog-post_53.html

cereals three times a day, but dishes of sour-milk products, meat and fish were totally absent. This being the case, some patients had been staying at the department for years.

At the same time the issue of repairs in the department's main building (replacement of floors, painting of walls, etc.), replacement of beds and equipment of wards with furniture (bedside tables and cabinets) and technical means of rehabilitation for low-mobility patients (an appropriate ramp, wheel chairs, chairs, means for walking, seats and stairs for baths, etc.) still remains relevant.

20 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions No changes were made in the organization of the institution's activities: the department continued to provide care and services rather than palliative care. The department did not cooperate with social welfare institutions for placing patients in residential institutions and with internal affairs bodies for renewal of identity documents.

In addition, such systemic problems may occur in similar institutions due to the lack of a regional program for the development of palliative care provision in the Lviv Region, as there is no interaction between different entities in the provision of palliative care and social services for palliative care, the procedure of which was approved by Order of the Ministry of Social Policy and the Ministry of Health, dated May 23, 2014, No. 317/353.

Using this opportunity we would also like to mention that in accordance with Recommendation Rec (2003) 24 of the Committee of Ministers of the Council of Europe to Member States On the Organization of Palliative Care, regional governments need to design and implement comprehensive rational palliative care strategies in close collaboration with professionals and patients and families, or their representatives.

Kyiv City Clinical Hospital of War Veterans and Department of Palliative Medicine of Kyiv City Clinical Hospital No. 2 Employees of the Secretariat of the Commissioner for Human Rights, together with public monitors, performed visits to the Hospice Department of the Inpatient Sector at the Kyiv City Clinical Hospital of the War Veterans and the Palliative Department of Kyiv City Clinical Hospital No. 2 on May 02, 2018.

The monitoring visit to the Hospice Department of the Inpatient Sector at the Kyiv City Clinical Hospital of Veterans of War (hereinafter referred to as the Hospice Department) was a repeat one. During the previous visit (December 2017), a number of shortcomings were detected, which, at the time of the repeat visit, were partially eliminated (hot water supply was restored, a pipe in the sanitary room was repaired, etc.).

At the same time other shortcomings were detected at the Hospice Department, as well as the following outstanding problems: - replacement of wooden beds with functional ones. At the department of 15 beds only 3 were functional the remaining beds were wooden; - repair or replacement with a new nurse call system. According to the staff, the call system had not worked for a long time; - violation of the right to privacy. The bathroom needed equipment with an opaque shower screen and a latch on the door; - improvements in the quality of sanitary and hygiene procedures. The Hospice Department was clean, there were no foreign odors and there was a sufficient amount of disinfectants. However, the monitors detected that patient M. from Room No. 3 had long toenails, which indicated the poor-quality sanitary procedures. In addition, according to the staff, hygiene procedures for all bed patients were carried out using one bowl; - restoration of the right to free movement. The department was located on the eighth floor, so low-mobility patients were not able to go for a walk on their own. In order to get in they had to ring the bell; in order to get out – ask the staff to help. In this case, patients were entirely dependent on staff decisions, which lead to a violation of paragraph 6 of the Resolution of the Parliamentary Assembly of the Council of Europe 1649 (2009), which states that palliative care allows people suffering from serious illnesses, pain or despair to express their will. Therefore, this approach is based not only on needs but also on the ability to directly implement their civil rights, as well as the right to participate in shaping their destiny until their death;

- thresholds in the wards did not meet the requirements of paragraph 6.1.11 of DBN V2.2-17:2006 Buildings and Structures. Accessibility of Buildings and Structures for Low-Mobility Population Groups (doorways shall not have thresholds and height differences of floors); - staffing (there were vacant positions of psychologist and social worker). Since the purpose of a hospice is not only to provide medical care but also to provide a comprehensive care of a person, who is in the final stages of life, taking into account their interests and needs, then a multidisciplinary team should be involved in the achievement of the goals of hospice care, which should include, in addition to medical staff, a social worker, a lawyer, representatives of religious communities, volunteers, etc.; 21 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions - lack of professional training for nurses and junior medical staff on the basics of palliative care. Only A.B. Kovalenko, Head of the Department, advanced her qualification on this subject in December 2017.

The repeat visit to the Palliative Department of Kyiv City Clinical Hospital No. 2 highlighted that the palliative department still had the following outstanding problems noted in the course of the previous visit (2014): - according to the staffing structure, there were 34.25 staff positions; 11.75 staff positions though remain vacant (1.5 positions of physicians, 7.5 of nurses, 2.75 of junior nurses); - wards had a video surveillance, video broadcast of which was displayed on the monitor at a medical post.

This is a violation of the right to privacy, which is guaranteed by Article 32 of the Constitution of Ukraine, which states that no one can interfere in personal and family life of a person except in cases provided for by the Constitution of Ukraine; - each ward had emergency nurse call buttons. However, the call system was not functioning at the time; - the department lacks space and premises (some wards were overcrowded, there was no room for patients to talk with relatives and clerics in person).

It was also found that in 2017 15 persons less than in 2016 were treated for malignant tumors at the Palliative Department, while number of persons with diseases of the circulatory system increased – this time the department had 33 persons more compared to the number registered in the course of the previous visit.

It should be noted that the common problem of the two abovementioned palliative departments was the non-compliance with the requirements of paragraph 6.1. of the Recommendations from the European Association for Palliative Care White Paper on Standards and Norms for Hospice and Palliative Care in Europe, which states that as for adequate provision of palliative care, the percentage of patients requiring palliative care are estimated at 40% (non-oncological patients) and 60% (oncological patients) respectively.

5. Violation of Patients’ Rights, which Contradicts the Principles of Palliative Care 1. Regarding pain management drugs, including narcotic ones: About one third of palliative care departments (hospices) did not have stocks of narcotic drugs and did not use them in their practice (‘we bring them from other departments or call an ambulance’ as an explanation).

Five institutions called «Hospice» did not have – or did not use – a license for medical practice.

In the documentation issued to patients upon discharge from the medical institution, physicians: - did not give recommendations for extending the use of pain management drugs.

- whenever they gave recommendations they did not describe the medication regimen in detail: which medicine was recommended, its dose and dosing frequency per day.

• There was no practice to provide a supply of painkillers “for the road”: patients needed a long time to get home, call a family doctor and undergo a procedure for getting narcotic drugs at a polyclinic at their place of residence.

• There was no practice of prescribing narcotic pain management medication by physicians: if a patient has a prescription at the time of their discharge from a hospital, it is much easier for them to hold out during the long period of their way home not to undergo the procedure of prescription and administration of painkillers at a polyclinic at their place of residence.

2. Some institutions that were subject to monitoring did not comply with the minimum standards for general care of a sick person (skin care, prophylaxis of bedsores, frequency of changing the diapers, etc.).

3. At many institutions there were no staff psychologists (working either by labor agreement or on a voluntary basis). The same situation was with social workers. Generally, staffing structures of the palliative care departments were not clearly defined due to the fact that they were not determined in Order of the Ministry of Health No. 33, dated February 23, 2000 (which, at the time of writing the Report, was no longer valid).

4. There was no system (a procedure developed and approved by an order of the medical institution's management) of receiving informed consent for hospitalization and consent for the use of treatment methods at many institutions in the meaning of the Civil and Family Codes of Ukraine.

22 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions 5. Some institutions did not take into account the needs of people who were unable to move on their own (there was no special equipment in sanitary rooms, no elevators, no means for heating food or getting drinking water).

6. There was no – and there is no – sustainable legal aid at palliative care institutions. One consequence of the lack of legal assistance was the long-term stay of patients for social rather than for medical indications – most often at the hospice there were people, who did not have passports and who, on this basis, could not be transferred to social welfare institutions.

7. The issue of notarial acts for palliative care patients receiving narcotic drugs is not regulated.

8. The following issue is yet to be resolved: is it necessary to carry out an autopsy of the deceased patient at a palliative care institution (hospice)?

9. There were no existing supervisory boards consisting of community representatives, which, by their activities, would prevent the aforementioned violations at palliative care institutions.

6. Violation of Rights of Patients in Need of Palliative Care from View Point of International Covenant on Economic, Social and Cultural Rights and the Convention for the Protection of Human Rights and Fundamental Freedoms The analysis of the results of the monitoring visits conducted by Institute for Legal Studies and Strategies NGO, showed that in the places of deprivation of freedom subordinated to the Ministry of Health there were violations of human rights in the understanding of the International Covenant on Economic, Social and Cultural Rights and The Convention for the Protection of Human Rights and Fundamental Freedoms.

1. Violation of Article 12 of the International Covenant on Economic, Social and Cultural Rights: the right of everyone to the enjoyment of the highest attainable standard of physical and mental health Causes: • Denial in providing pain relief medication.

• Rare availability of patronage services (visiting nurse).

Failure to comply with the core obligations of the State. General Comment 14: (a) To ensure the right of access to health facilities, goods and services on a non-discriminatory basis, especially for vulnerable or marginalized groups; (d) To provide essential drugs, as from time to time defined under the WHO Action Programme on Essential Drugs.

2. Violation of Article 3 of the Convention on the Prohibition of Torture: the refusal to provide adequate pain relief medication may be considered as torture or cruel, inhuman or degrading treatment of a sick person (palliative care patients).

General Problems Preventing from Provision of Quality Palliative Care 1. The majority of medical institutions providing palliative care had a license for circulation of narcotic and psychotropic drugs at the time of the monitoring visit, but some of them (32%) did not have a stock of narcotic and psychotropic drugs right at the departments designated to provide palliative care.

Note: The practice of bringing narcotic drugs from an emergency care department or call an emergency medical aid team to the palliative care department to relieve pain or stop seizures whenever required did not comply with the principles of palliative care.

In some cases palliative care patients with a pronounced pain syndrome were transferred to other departments.

2. The purpose of palliative care (WHO definition) shall be interpreted as follows: if the specialized departments do not use narcotic pain management drugs or avoid using them by all means, they are not palliative departments, but rather typical geriatric departments, as was rightly noted in one report about the NPM visit.

3. A palliative care department (hospice) cannot be a ‘formal’ medical institution that does not care what happens to the patient at the hospital's threshold.

23 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions The first step should be to provide discharging patients with pain relief medication for several days in advance (under current legislation – for a maximum of 10 to 15 days), or ‘to discharge with a prescription’. The next step could be to set up filed multidisciplinary teams to provide specialized support to patients at home.

4. Lack of general care for a sick person – staff skills shall be in line with the standards of care and the staff should strictly adhere to these standards while performing their duties. Management of medical institutions shall conduct regular staff training.

5. Limited ability to help patients with maintaining their personal hygiene – access to rooms equipped with personal hygiene facilities, including for persons with special needs, shall be provided.

6. Lack or limited availability of special means and equipment for people with special needs, an elevator, etc. – management of medical institutions shall ensure the rights of people with special needs, but this demand applies not only to palliative care departments.

7. Lack of psychological and spiritual support – it is necessary to provide (or on the basis of volunteering) the position of professional psychologist in the staffing structure for them to work with patients and to conduct regular trainings of staff at palliative care departments on psychological skills enhancement.

The organization of spiritual support on the part of the church is also extremely important.

8. Violation of the right to free choice of a physician, a medical institution and treatment methods.

Patients in need of palliative care have the same rights and responsibilities as patients with other health conditions. Therefore when dealing with palliative care patients it is necessary to comply with the requirements of the Civil Code of Ukraine and other regulations enforcing the right to free choice of a physician, a medical institution and treatment methods, preventing all forms of discrimination or violations, which have signs of deprivation of liberty.

24 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions Annex 1

Beyond the traditional: Protecting Rights of Palliative Patients

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National Preventive Mechanism, Ukraine The Ukrainian National Preventive Mechanism is an 'Ombudsman Plus' model, composed of staff from the NPM Department under the Office of the Ukrainian Parliament Commissioner for Human Rights and civil society representatives. There are more than 200 civil monitors regularly visiting places of detention as part of the NPM. The involvement of civil society in the NPM work has been crucial to be able to monitor the large number of places of detention in the country and to conduct research on specific thematic areas.

Since the beginning of its activities in 2012, the Ukrainian National Preventive Mechanism has monitored the conditions and treatment of persons deprived of liberty in different types of places of detention, including prisons, police stations, immigration facilities, juvenile detention centres, court facilities, children's care homes, psychiatric institutions and military units.

In 2015, the NPM also started to monitor hospices and palliative departments within hospitals, which are considered to be places of deprivation of liberty as the majority of patients do not give their consent for hospitalization and treatment.

Through its first visits to such institutions, the NPM found that palliative patients were being kept in terrible material conditions, without any unified standards of treatment. There was no specific state budget for hospices and no legal regulations for providing narcotic drugs for patients suffering from permanent pain. As a result of the NPM's intervention, a national round table was conducted with all relevant stakeholders. The recommendations of the round table were sent to the Prime Minister, who issued a special decree requesting all regions to ensure places for palliative patients at hospitals. A state budget was also allocated for hospices.

Since then, the situation has significantly improved. Today, there are two centres for palliative and hospice care, eight hospices and 60 hospital divisions for palliative care, for a total of 1'500 patients, functioning in the country.

The NPM continued to monitor these institutions and found that, despite the improvements made, the existing number of institutions for palliative and hospice care was not enough. 3'500 patients are still in need of palliative care they do not receive in specialised institutions. Furthermore, palliative care is not provided in accordance with international standards. Contrary to all regulations, patients are not kept in hospices only during the terminal stage of their illness. Instead, they are used as social institutions for long-term stays. The NPM has also observed the insufficient provision of drugs for pain relief and an absence of licenses for medication for depression and anxiety.

In 2015-2016, the Office of the Commissioner, jointly with civil society representatives, organised several events to discuss issues related to the provision of palliative care and to find relevant solutions. As a result of the NPM's recommendations, following visits to these institutions, the Ministry of Health adopted an order which allows the use of advanced tools and standards to ensure anaesthesia for palliative patients. Also, programmes of palliative care have been developed and approved in all regions. Within the framework of 23

Putting prevention into practice. 10 years on: the Optional Protocol to the UN Convention against Torture. Š 2016, Association for the Prevention of Torture (APT)

these programmes, divisions of palliative care were opened in 2016 at the clinical hospitals of the cities of Vinnytsia and Kropyvnytskyi.

25 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions Annex 2 List of Visits to Palliative Care Departments and Hospices by Region Date of visit November 14, 2014 November 14, 2014 December 18, 2014 September 13, 2016 September 14, 2016 July 20, 2017 October 04, 2017 October 08, 2014 May 02, 2016 October 10, 2014 October 16, 2014 December 06, 2017

November 08, 2014 April 21, 2015 repeat visit May 06, 2016 May 06, 2016 November 28, 2017

March 20, 2015

Institution Lviv Region Lviv City Hospital "Hospice" Palliative Care Department on the basis of the Sheptytsky Hospital Palliative Care Department (on the basis of City Hospital No. 4) Palliative Care Department of the Olesko Hospital in the Busk District Staryi Sambir Central District Hospital (a hospice department providing palliative care, 15 beds) Palliative Care Department of the Olesko Hospital in the Busk District (repeat visit) Palliative Care Department of Drohobych District Hospital No. 2 Kyiv Region Hospice Department of Kyiv City Clinical Hospital No. 10 Hospice Department of Kyiv City Clinical Hospital No. 10.

REPEAT VISIT Palliative Care Department "Hospice" of Kyiv City Clinical Hospital No. 2 Department of Palliative Medicine (at the Kyiv City Clinical Oncology Center) Kyiv City Clinical Hospital of War Veterans (Palliative Care Department) Mykolaiv Region Palliative Care Department (on the basis of a regional tuberculosis dispensary) Zakarpattia Region Mukachevo Central District Hospital (Geriatric and Oncological Department) Mukachevo Central District Hospital (Geriatric and Oncological Department) Vynohradiv District Hospital (4 palliative care beds) Vynohradiv Geriatric Boarding House a palliative care department Vynohradiv Geriatric Boarding House a palliative care department. REPEAT VISIT Ivano-Frankivsk Region Ivano-Frankivsk Regional Hospital "Hospice" (Ivano-Frankivsk).

February 08, 2017 April 08, 2015 May 19, 2016

Palliative Care and Hospice Department of the Yablunytsia District Hospital Donetsk Region Center for Medical and Social Rehabilitation of the Communal Establishment of Mariupol City Council "City Hospital No. 10" Center for Medical and Social Rehabilitation of the Communal Establishment of Mariupol City Council "City Hospital No. 10"

26 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions April 16, 2015 January 21, 2016 April 17, 2015 April 04, 2015 November 06, 2017 November 06, 2017 August 26-27, 2015 May 02, 2016

Khmelnytskyi Region Khmelnytskyi Regional Center for Prevention and Control of AIDS (stationary department for adults and children with a hospice unit) Khmelnytskyi Regional Anti-TB Dispensary (5 palliative care beds) Rivne Region Department of Palliative Medicine of the Dubno Medical College Poltava Region Poltava Regional Center for HIV Prevention and Control of AIDS, palliative care department.

Palliative Care Department for Oncological Patients at the Myrhorod District Hospital Poltava City Clinical Hospital No. 4 (palliative care beds) Volyn Region Volyn Regional Hospital "Hospice" Volyn Regional Hospital "Hospice". REPEAT VISIT Zhytomyr Region

July 02, 2015

Saint Helena Hospice

August 10, 2017

Dnipropetrovsk Region Department of Palliative and Hospice Care of the Communal Establishment "Dnipropetrovsk City Hospital No. 15" of the Dnipropetrovsk Regional Council" Department of Palliative and Hospice Care of the Communal Establishment "Dnipropetrovsk City Hospital No. 15" of the Dnipropetrovsk Regional Council" Palliative Care Department of the Marhanets Central City Hospital

September 30, 2015 March 24, 2017

Kherson Region Kherson Regional Hospital "Hospice" Kherson Regional Hospital "Hospice". REPEAT VISIT

August 26-27, 2015 June 07, 2017

July 16, 2015

Chernihiv Region Chernihiv Regional Psychoneurological Hospital (a department of mental and behavioral disorders to assist the elderly patients with concomitant severe somatoneurological pathology and a hospice) Palliative Care Department Kharkiv Region

March 15, 2016 March 15, 2016

Kharkiv City Hospice (50 beds) Kharkiv Regional Center of the Palliative Medicine "Hospice"

June 08, 2016 June 06, 2016

Ternopil Region Ternopil City Communal Emergency Care Hospital (hospice beds) Ternopil Regional Hospice

August 05, 2016 January 25, 2016

Zaporizhia Region Zaporizhia Regional Center for AIDS Prevention and Control Charitable Establishment "Archangel Michael Hospice"

27 Consolidated Report on Monitoring Results Regarding Observance of Rights of Patients in Need of Palliative Care in Ukrainian Health Care Institutions February 16, 2017 February 17, 2017 April 21, 2017 July 03, 2017

Sumy Region Ulyanivka Rural District Hospital of the Bilopillia Central District Hospital (palliative care beds) Mykolaivka Rural District Hospital of the Bilopillia Central District Hospital (palliative care beds) Department "Hospice" of the Putyvl Central District Hospital Kirovohrad Region Palliative Care Department (beds) of the Kropyvnytskyi Central City Hospital

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