No 021-01-471/2017-02 Date: 8 2 2018
Acting within their prescribed competence[1] to monitor the enforcement of laws regulating the prohibition of discrimination and recommend measures for achievement of equality to public authorities and other persons, the Commissioner for Protection of Equality has addressed the Recommendation to the Ministry of Health and the Ministry of Labour, Employment, Veteran and Social Policy.
RECOMMENDATION ON MEASURES FOR ACHIEVING EQUALITY
- The Commissioner for Protection of Equality recommends to the Ministry of Health as follows:
– to undertake measures and activities within its competences for the purpose of further development and improvement of the system of palliative care of patients and provision of support to their families in the territory of the entire Republic of Serbia, in particular to comprehensively consider the current situation in the Republic of Serbia and, in accordance with the possibilities, undertake measures and activities to ensure that patients and their families are adequately included in the scope of such support.
- The Commissioner for Protection of Equality recommends to the Ministry of Health and the Ministry of Labour, Employment, Veteran and Social Policy as follows:
– to undertake measures and activities within their competences in order to ensure conditions for provision of services to beneficiaries who, due to specific social and health status, have a need for social care and permanent health care or supervision, and in particular, to prescribe standards for service provision in accordance with Article 60, paragraph 3 of the Law on Social Protection[2].
The Ministry of Health and the Ministry of Labour, Employment, Veteran and Social Policy shall inform the Commissioner for Protection of Equality on measures undertaken with a view to implementing this recommendation, within 30 days from the date of receipt of the recommendation on measures for achieving equality.
No appeal or any other judicial remedy is admissible against this recommendation on measures for achieving equality.
Statement of the Reasons
In 2017, citizens addressed complaints to the Commissioner in which they indicated that they were discriminated against on the grounds of their health status and age. Same as during the previous years, these two grounds were among the top four by the number of complaints addressed to the Commissioner.
During the procedure regarding the complaint of a citizen whose father was suffering from cancer, it was stated that she and her family were scared, insecure and confused because they wanted to help their father who was in the terminal stage of illness, that they were facing challenges of the illness every day, but that they had no support from the health institution where her father was being treated. The complainant pointed out the necessity to develop services both in terms of care and practical support, noting that it was necessary, for a start, to receive the most essential information from the doctor and other personnel.
In addition, the civil society organisation which has approached the Commissioner for Protection of Equality states that the health care and social protection system does not adequately recognise the needs of patients due to insufficient capacities of hospitals, as well as the insufficient sensitization of the society as a whole towards this vulnerable group. It is further stated that, in a number of cases, patients do not have family members to take care of them, while the expenses of palliative care at home are high, which is why it is necessary to develop such services in order to make them available to those in need. It has also been stated that it is necessary to point out the importance of palliative care with a view to improving the patients’ quality of life and protecting the patient’s dignity during the last days of their lives.
The Commissioner for Protection of Equality states that the Constitution of the Republic of Serbia[3], Article 21, prohibits any discrimination, indirect or direct, on any grounds, particularly on the grounds of race, sex, nationality, social origin, birth, religion, political or other belief, property, culture, language, age, psychological or physical disability.
The constitutional prohibition of discrimination is further elaborated on in the Law on the Prohibition of Discrimination, Article 2, paragraph 1, point 1, which defines discrimination and discriminatory treatment as any unwarranted differentiation or unequal treatment or omission (exclusion, limitation or prioritization) against persons or groups and/or their family members or persons close to them, in an overt or covert manner, on the grounds of race, colour, ancestry, citizenship, nationality or ethnic origin, language, religious or political belief, sex, gender identity, sexual orientation, property, birth, genetic features, health status, disability, marital and family status, criminal record, age, appearance or membership in political organisations, trade unions and other organisations and other real or assumed personal characteristics.
Also, Article 27 of this Law prescribes non-discrimination of persons or groups of persons in terms of their health status or the health status of their family members, and that discrimination occurs in particular if a person or group of persons are, due to their personal characteristics, unreasonably denied provision of health services, required to meet specific requirements which are not medically justified, denied a medical diagnosis or information on the current health status, treatment or rehabilitation measures taken or intended, ad/or are harassed, insulted and/or belittled during their stay in a health institution.
The principle of fairness in health care is also prescribed in Article 20 of the Law on Health Care,[4] which prescribes non-discrimination in the provision of health care on the grounds of race, sex, age, nationality, social origin, religion, political or other belief, property, culture, language, type of illness, psychological or physical disability. Furthermore, Article 88, paragraph 1, point 12) of this Law prescribes that primary health care includes palliative care, while Article 110, paragraph 6 prescribes that secondary health care in hospitals may have special organisational unit for palliative care of patients in the terminal stage of illness. Article 99 of the same Law prescribes that the selected doctor, among others, shall perform both home treatment and palliative care, as well as treatment of patients who do not need hospital treatment.
The Palliative Care Strategy and the Action Plan for its implementation[5] emphasize that the need for palliative care is becoming a priority problem, which requires the state, in collaboration with health care practitioners and medical associates, associations, patients, their families and the media, to develop a national health policy on palliative care, to define strategic goals and measures. The prescribed general strategic goals are as follows:1) inclusion of the palliative care into the health system of the Republic of Serbia, in order for it to become an inalienable element of the citizens’ right to health care, 2) improvement and achievement of the best possible quality of life for patients and their families. General goals are further elaborated on through specific objectives and measures for their achievement. One of the specific objectives (6.2.1.) is to define national standards of palliative care. The Strategy prescribes that a primary health care team for palliative care shall consist of a doctor of medicine/general practitioner, a nurse, a public-health nurse, a physiotherapist and a social worker, while the broader team for palliative care shall include a psychologist, a priest and a volunteer. On the level of secondary health care in palliative care institutions, the team shall consists of a doctor of medicine/general practitioner and a nurse, while the consultation team on the level of tertiary health care in palliative care institutions shall include a doctor of medicine who is a specialist in a specific field of medicine and a nurse. The Action Plan for the implementation of the Strategy for the period 2009-2015 prescribes the measure for achievement of this specific objective of amending and supplementing the Rulebook on detailed conditions on providing health care services in health care institutions and other health care providers[6] in terms of establishing a home health care service in all local self-government units with a population of over 25,000, and an increase of the number of staff and beds in health institutions in the light of the number of inhabitants. Further, another specific objective (6.2.4.) is to establish an organisationally and financially sustainable palliative care model.
The 2017 Rulebook on the content and scope of the right to health care arising from mandatory health insurance and on co-payment,[7] Article 11, point 9), prescribes that palliative care is a comprehensive and continuous care of an insured person suffering from a malignant tumour, obstructive lung disease, HIV/AIDS, consequences of a traffic accident or physical trauma, in the terminal stage of illness. The goal of palliative care of an insured person is less suffering, more dignity and better quality of life of the patient.
The World Health Organization[8] defines palliative care as an approach that improves the quality of life of patients and their families, addressing the problems 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. The term “life-threatening illness” refers to patients with an active, progressive, advanced illness and a limited life expectancy. This type of care also entails a philosophy of taking care of the patient and their family, as well as the very service of palliative care. It includes the period from the diagnosis of the illness, to the end of the period of bereavement due to the loss of a family member.
Palliative care is a holistic approach to the support for patients and their families from the beginning of the illness. It is important because it may improve the quality of life of a patient and their family. Palliative care is performed by a team consisting of, in addition to the family and the patient, medical doctors, medical technicians, a social worker, psychologist, priest, physiotherapist, and others as appropriate. The holistic approach strives to help the patient use all of their strength to endure their illness with dignity, and ultimately, die with dignity. Due to the patient’s state of health, i.e. stage of illness, the patient needs not just the medical treatment, but also additional support for eliminating physical and psychological pain, as well as for overcoming other difficulties of the terminal stage, such as fear and anxiety. Palliative care should provide the elimination of pain and other symptoms, affirm life and view death as a natural process, integrate psychological and spiritual aspects of taking care of a patient, provide a system of support and assistance to patients and their families in overcoming problems during the illness of a family member, as well as during the period of bereavement due to the loss of a family member. Thus palliative care should target patients of a certain state of health, regardless of their age.
On the basis of the European Union Enlargement Strategy[9], the European Commission has initiated a new process which will establish and monitor priorities relating to employment and social policy for countries in the process of accession. In that regard, in 2016, the Government of the Republic of Serbia adopted the Employment and Social Policy Reform Programme (ESRP) in the process of accession to the European Union,[10] which establishes priorities of Serbia in the process of accession to the EU. One of the prescribed objectives with regard to changes and measures in the field of social and child protection is objective 4: Improve the long-term care system. As a part of this objective, it has been pointed out that, for the purpose of improvement of long-term care, cross-sectoral cooperation of health care and social protection is necessary, which specifically entails defining a network of social welfare and health care institutions, as provided for in the 2011 Law on Social Protection, defining the role of residential care in the palliative care system, and establishing a protocol on the improvement of care for beneficiaries who need both social and health care services. Health care reforms are also prescribed under the objective 6: Better availability of health care to people aged over 65, which provides for the following measures: develop and strengthen work in the areas of home care and palliative care in the primary health care centres of all “elderly” municipalities in Serbia; continue the establishment of dedicated palliative care units within extended treatment and care wards in inpatient health care institutions with a stock of beds in line with the needs imposed by the health status of the elderly in the municipality, and equip the polyvalent community nursing service better to visit and assist the elderly suffering from chronic mass non-communicable diseases.
As far back as 2005, when the Social Protection Development Strategy was adopted,[11] the importance of the cooperation between the ministry in charge of social protection and the Ministry of Health was recognized, through an agreement on the cooperation plan, inter alia in the following area: home care and provision of health care in social protection institutions, palliative care.
The Law on Social Protection,[12] Article 60, prescribes that social welfare and health care institutions may be established for beneficiaries who, due to their specific social and health status, have a need both for social care and permanent health care or supervision. Paragraph 2 of this Article prescribes that special social welfare and health care organisational units may be established within social protection institutions or health institutions for beneficiaries referred to in paragraph 1. Furthermore, paragraph 3 of this Article prescribes that ministers in charge of social protection and health shall prescribe standards for provision of services in institutions referred to in paragraphs 1 and 2 of this Article. Above mentioned standards necessary for organisation and application of such specific services have still not been prescribed, although the deadline for establishment of such standards, as prescribed in Article 229 of the Law on Social Protection, has expired.
Demographic trends forecast a further growth of the percentage of elderly people, as well as an extension of the life expectancy, which will result in a significant increase of the percentage of elderly people of the 80+.age group. The population ageing is also increasing the percentage of elderly chronically ill people and functionally dependent people (atherosclerotic changes resulting in an increase of the number of people suffering from cardiovascular diseases, malignant diseases, chronic obstructive lung diseases, musculoskeletal disorders, osteoporosis as the main cause of disability of the elderly, neurological disorders). Having in mind the high percentage of elderly people who live alone, often without any support from their families, people aged 65+ will have a growing need for home care and palliative care services.[13].
Regardless of the possibility provided for by the law, social welfare and health care institutions for beneficiaries who, due to their specific social and health status, need both social care and permanent health care or supervision, so far have not been established.
National Strategy on Ageing[14], adopted for the period until 2015, prescribed General Goal 1: Sustainment and improvement of health condition and quality of life among aged individuals by means of healthcare service provision in appropriate scope, content and quality. Under this General Goal, Activity 1.3 inter alia stipulates that, in the forthcoming period, institutions for long-term care and palliative sheltering – sister centres – shall be established. The Strategy stipulates that the implementers of this activity shall be the Government, the Ministry of Labour, Employment and Social Policy, Ministry of Health, authorities of the Autonomous Province and authorities of local self-government units, in collaboration with the private sector relating to the health care and social care and non-governmental organisations and citizen associations. During the evaluation of this strategy, all defined strategic directions were assessed to be appropriate for the forthcoming period as well, with the recommendation on establishment of priorities for the forthcoming period, inter alia both for defining and legally regulating the field of ageing and for practically connecting and developing long-term care services.[15].
The National Programme for Palliative Care for Children[16] regulates the implementation of health care which includes activities for the improvement of palliative care for children on all levels of health care in Serbia. The situation analysis of this programme states that children with indications for palliative care are mostly placed in tertiary level institutions, often in intensive treatment and care units. These institutions are achieving an acceptable level of multidisciplinary approach of teams consisting of paediatricians, psychologists, social workers, representatives of parents’ associations, nutritionists. The multidisciplinary approach still does not entail specialists with special education in paediatric palliative medicine, and spiritual care is also considerably neglected. Care currently provided to children suffering from incurable diseases is still not organized in the optimal manner at the secondary, and in particular at the primary health care level. This results in a lack of continuity of care, which requires provision of support to the entire family, as well as care from the moment of diagnosis, for the duration of the disease, and during the period of bereavement after the death of the child. The National Programme for Palliative Care for Children prescribes the following main goals of the Programme: comprehensive care for children with pathological conditions or life-threatening and life-limiting diseases, with a view to achieving the highest possible quality of life for the child and their family, and integration of palliative care for children into all levels of the health system. The prescribed specific objective 7.2.2. is defining and harmonising national standards and rules for palliative care for children with the European standards.
Serbia has a legal and strategic basis for the implementation of palliative care, as well as for the development of social welfare and health care institutions. However, there are no established mechanisms for the implementation of these solutions, or those mechanisms are not fully established and implemented. Serbian health system is not capable of satisfying all needs of persons who need this service. Persons who need this type of support and their families are, in practice, often left to their own devices. Due to the lack of standards for provision of services, social welfare and health care institutions have not developed this form of support, in spite of the need for it.
When adopting this recommendation on measures for achieving equality, the Commissioner for Protection of Equality particularly had in mind the period of adoption of the Palliative Care Strategy (2009) and the fact that the validity period of the Action Plan for the implementation of the Strategy expired in 2015. A review of the situation and the current circumstances in Serbia in comparison to the needs for organizing palliative care would make it possible to undertake appropriate activities for improvement of the situation in this field, in line with needs and possibilities.
On the other hand, as stated above, Article 60(3) of the Law on Social Protection prescribes that standards for provision of services to persons who need social care and constant health care and supervision in adequate institutions will be prescribed by the ministers in charge of social protection and health. The existence of standards would allow a development of such services and evolution of new institutions, which would contribute to the improvement of the position of persons who need this service.
In view of all these circumstances, the Commissioner for the Protection of Equality, acting in accordance with the Article 33, point 9 of the Law on the Prohibition of Discrimination, recommends to the Ministry of Health and the Ministry of Labour, Employment, Veteran and Social Policy to undertake appropriate measures which will ensure observance of the principle of equality.
[1] Law on the Prohibition of Discrimination (“Official Gazette of the RS”, no 22/09), Article 33, paragraph 1, point 7 and 9
[2] ”Official Gazette of RS”, no 24/11
[3] ”Official Gazette of RS”, no 98/06
[4] ”Official Gazette of RS”, no 107/05, 72/09 – as amended, 88/10, 99/10, 57/11, 119/12, 45/13 – as amended, 93/14, 96/15 and 106/15
[5] ”Official Gazette of RS”, no 17/09
[6] ”Official Gazette of RS”, no 43/06, 112/09, 50/10, 79/11, 10/12 – as amended, 119/12 – as amended and 22/13
[7] ”Official Gazette of RS”, no 8/17 and 61/17, Article 11
[8] http://www.who.int/cancer/palliative/definition/en/
[9] http://www.mei.gov.rs/upload/documents/eu_dokumenta/strategija_za_prosirenje/strategija_prosirenja_15.pdf
[10] https://minrzs.gov.rs/lat/aktuelno/program-reformi-politike-zaposljavanja-i-socijalne-politike-u-procesu-prist447cd5bb31b5d1565483b1a42.html
[11] “Official Gazette of RS”, no. 108/2005
[12] “Official Gazette of the RS”, no 24/11
[13] Palliative Care Strategy
[14] “Official Gazette of RS”, no. 76/2006
[15] Older People in Rural Areas, B. Janković, G. Zarić, M. Vračević, N. Todorović, Red Cross of Serbia, 2016
[16] Regulation on the National Programme for Palliative Care for Children, “Official Gazette of RS”, no. 22/2016
COMMISSIONER FOR PROTECTION OF EQUALITY
Brankica Janković
