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Palliative care in Eastern Europe 

Palliative care in Eastern Europe
Chapter:
Palliative care in Eastern Europe
Author(s):

Nicoleta Mitrea

and Daniela Mosoiu

DOI:
10.1093/med/9780199332342.003.0080
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This chapter is divided into several sections, including a general introduction, where demographic data, cultural aspects, and common characteristics of countries in Eastern Europe are presented, as well as a review of individual countries in the region with examples of success stories presented by leaders from those countries.

In the process of implementing palliative care in Eastern Europe a commonly used framework has been the World Health Organization’s Model for Public Heath.1 According to this model there is a need for specific policies supporting palliative care integration into national strategic plans, including:

  • educational programs for healthcare providers as well as authorities, media, family caregivers, and the general public,

  • implementation programs to bring care to those in need

  • available drugs with special attention given to opioids as essential medications to relieve pain

Description of the Eastern European region

There are different perspectives regarding the countries that belong to Eastern Europe, depending on numerous factors: geographic, political, economic, and cultural.

Geographically, Eastern Europe is the eastern part of the European continent, between the Ural and Caucasian Mountains at the eastern border, with an arbitrary line chosen to define the western border (Figure 79.1).

Politically, for almost 30 years, the Berlin Wall represented the barrier between East and West in Europe. After its fall in 1989, countries under the communist regime fought to obtain independence from the influence of the United Soviet Socialist Republic (USSR) and to become democratic republics.

Economically, most of these countries have an agricultural background, with industry and factories collapsing after the fall of communism, as the USSR was the primary market for their products. The impact of communism is now seen in these countries through the industrial architectural style of the blocks of flats in urban cities, the economic decline resulting in significant poverty and unemployment, and centralized politico-administrative systems that go hand-in-hand with rigid bureaucracy.

Culture is what makes us strangers when we are not at home.2 Some authors describe Eastern Europe from a cultural perspective as the region in Europe with influences of Byzantine, Orthodox, and some Turk-Islamic cultures.3,4

Eastern Europe is a region where ethnic, national, social and political, religious, and cultural diversities have led to tensions, hostilities, and clashes, and also to wars, massacres, deportation, and “ethnic cleansing”; diversity in all its richness has been the target of deliberate destruction here.5 Fifty years of communism put a strong mark on the lives of generations that lived under the principals of dictatorship, in centralized systems characterized by a lack of freedom of speech, spiritual belonging, and cultural inheritance, and complete prohibition of ownership.6

The Eastern European nations share several cultural and economical behaviors:

  • A long-term orientation, which means they are more likely to save and value thrift

  • A hunger for new products and learning new skills

  • A preference for communication involving nonverbal cues

  • A tendency to pay attention to social branding and personal recommendation

  • A keenness toward self-service.7

According to the United Nations Statistic Division, the following 10 countries were classified as being located in Eastern Europe: Belarus, Bulgaria, Czech Republic, Hungary, Republic of Moldova, Poland, Romania, Russia, Slovakia, and Ukraine.8,9

For this chapter we use the above classification and have added three other countries: Albania, Greece, and Serbia. The long-term collaborative relationship between the authors and palliative care leaders in these countries in southeastern Europe, and their obvious commitment to the relief of suffering in patients and families, are reasons for presenting their situation and accomplishments.

The 13 countries included in our discussion here have a population of approximately 318 million inhabitants, with 4.3 million deaths per year (Figure 79.2). Noncommunicable diseases as a cause of death represent between 82% of deaths in Russia and 94% in Bulgaria. In this region cancer mortality is higher in countries like Greece, Czech Republic, Poland, and Hungary.

From a socioeconomic point of view, these countries are not a homogeneous group. Health expenditure ranges from $386 per capita in Moldova to $2918 per capita in Greece. However, palliative care in these countries has frequently developed outside the public system (through donations and private funding) and as a result, there is no linear correlation between health expenditure and advancement of palliative care in these countries (Table 79.1).

Table 79.1 Demographic and epidemiological data

Country

Population 2012a

Number of deaths 2008b

NCD* proportional mortality 2008c

Cancer proportional mortality 2008d

Number

(%)

Number

(%)

   1

ALBANIA

3,227,373

27,978

24,900

89

5,036

18

   2

BELARUS

9,527,498

131,379

114,300

87

17,097

13

   3

BULGARIA

7,397,873

110,425

103,800

94

15,460

14

   4

CZECH REPUBLIC

10,565,678

103,000

92,700

90

27,810

27

   5

GREECE

11,418,878

97,363

88,600

91

27,262

28

   6

HUNGARY

9,949,589

127,419

118,500

93

31,855

25

   7

POLAND

38,317,090

382,921

340,800

89

99,559

26

   8

REPUBLIC OF MOLDOVA

3,519,266

45,172

39,300

87

6,324

14

   9

ROMANIA

21,387,517

248,901

226,500

91

47,291

19

10

RUSSIA

142,703,181

2,095,488

1,718,300

82

272,413

13

11

SERBIA

9,846,582

123,895

117,700

95

24,779

20

12

SLOVAKIA

5,480,332

53,000

47,700

90

12,190

23

13

UKRAINE

44,940,268

754,535

648,900

86

82,999

11

* NCD—noncommunicable diseases

a Centeno C, Pons JJ, Lynch T, Donea O, Rocafort J, Clark D. EAPC Atlas of Palliative Care in Europe 2013—Cartographic Edition. Milan: EAPC Press; 2013.

b http://www.who.int/nmh/countries/en/, accessed August 13, 2013. The figure for deaths has been calculated by the authors from the WHO mortality database and is not attributed to the WHO.

c http://www.who.int/nmh/countries/en/, accessed August 13, 2013. The figure for NCD (noncommunicable diseases) mortality has been calculated by the authors from the WHO database and is not attributed to the WHO.

d http://www.who.int/nmh/countries/en/, accessed August 13, 2013. The figure for cancer mortality has been calculated by the authors from the WHO database and is not attributed to the WHO.

Impact of Communist heritage on the development of palliative care in Eastern Europe

The common communist background has had a direct influence on the development of palliative care services in these countries. The centralized systems, including healthcare decision-making, are still in place today, more than 20 years after the fall of the Berlin Wall. As a result, some countries in the region, like Moldova10 and Russia,11 have taken a top-down approach in the development of their services by putting into place regulations for the development of services based more on international expertise than on the needs and realities of the country.

Social and medical services are split and exist under distinct umbrellas: the Ministry of Social Welfare and the Ministry of Health provide different funding for social and medical aspects of care, making it difficult to provide holistic care. Some programs, like day care and bereavement services, fall between these two funding streams.

The old Semasko communist healthcare model was heavily reliant on inpatient care, with little attention given to community care.12 Even today these countries have a high percentage of beds/1000 inhabitants13 and are struggling to reform their healthcare to make it more efficient. This model of delivering healthcare becomes a barrier in developing home-based palliative care services, a very valuable setting of care for societies where home is the preferred place for death14 and where traditional values require that the family be involved in the care of their dying relative.15

Another trait inherited from communism is the hierarchical structure of medical and healthcare professions. It is common for health systems in all the countries included in this chapter to have nurses subordinate to physicians. This is partially related to the different educational levels for these professionals, but even in countries where nurses are educated at a university level, the recognition of each role remains an issue. For palliative care, where teamwork is a core principle, overcoming this attitude is a huge challenge.

Overview of palliative care development in Eastern Europe

The World Wide Palliative Care Alliance characterizes global development of palliative care into six categories as follows16:

  • Level 1: No Known Activity

  • Level 2: Capacity Building (countries where there is no palliative care service established but there is evidence of wide-ranging initiatives designed to create the capacity for hospice-palliative care services to develop)

  • Level 3a: Isolated Provision (the development of palliative care is patchy, often home-based in nature, and not well supported, with limited availability of morphine)

  • Level 3b: Generalized Provision (the development of palliative care in a number of locations with the growth of local support in those areas, multiple sources of funding, availability of morphine, provision of some training and education initiatives)

  • Level 4a: Preliminary Integration (the development of a critical mass of palliative care in a number of locations, a variety of palliative care providers and types of services, availability of morphine and some other strong pain-relieving drugs, limited impact of palliative care on policy, provision of a substantial number of training and education initiatives by a range of organizations)

  • Level 4b: Advanced Integration (the development of a critical mass of palliative care in a wide range of locations, comprehensive provision of all types of palliative care by multiple service providers, broad awareness of palliative care, unrestricted availability of morphine and all other strong pain-relieving drugs, substantial impact of palliative care on policy, in particular on public health policy, the development of recognized education centers, academic links forged with universities, the existence of a national palliative care association)

The countries in the Eastern European region are included in following categories:

  • Level 3a: Bulgaria, Greece, Moldova, Russia, and Ukraine,

  • Level 3b: Albania, Belarus, Czech Republic,

  • Level 4a: Hungary Serbia, Slovakia

  • Level 4b: Poland, Romania

Palliative care services in the region

The numbers of specialized palliative services in the countries in this region are represented in Table 79.2. The information in the table combines data from the European Association of Palliative Care Atlas17 and responses from questionnaires provided by key persons in the respective countries. In all countries, services are directed toward both cancer and noncancer patients.

Table 79.2 Palliative care services in the region

Services

Country

Inpatient units

Palliative home care teams

Ambulatory

Day centers

Palliative care hospital teams

No.

Location

Members of the id team

Eligible diagnoses

No.

Location

Members of the id team

Eligible diagnoses

No.

Location

Members of the id team

Eligible diagnoses

No.

Location

Members of the id team

Eligible diagnoses

No.

Location

Members of the id team

Eligible diagnoses

BELARUS

15 for adults, 5 for children

Minsk and 6 other regions

Physician, nurse, psychologist

Cancer & noncancer

5

Minsk

Physician, nurse, psychologist

Cancer patients

BULGARIA

48

Cancer & noncancer

11

3

CZECH REPUBLIC

17 (430 beds)

_

Physician, nurse, social worker, psychologist

Cancer & noncancer

10

Physician, nurse, social worker, psychologist, volunteers

Cancer & noncancer

_

9

Phisician, nurse, social werker, psychologist

Cancer & noncancer

2

Phisician, nurse, social werker, psychologist

Cancer & noncancer

HUNGARY

11

A total of 1541 persons in Hungary

Cancer & noncancer

72

A total of 1541 persons in Hungary

Cancer & noncancer

3

A total of 1541 persons in Hungary

Cancer & noncancer

4

A total of 1541 persons in Hungary

Cancer & noncancer

POLAND

145

Multiprofessional and voluntary

Cancer & noncancer

408

Multiprofessional and voluntary

Cancer & noncancer

8

Physician, nurse, social worker, psychologist

Cancer & noncancer

7

Phisician, nurse, social werker, psychologist

Cancer & noncancer

8

Phisician, nurse, social werker.

Cancer & noncancer

REPUBLIC OF MOLDOVA

2

  • Chisinau

  • Zubresti

Cancer & noncancer

5

  • Chisinau

  • Zubresti

  • Taraclia

  • Ocnita

  • Cimislia

Cancer & noncancer

5

  • Chisinau

  • Zubresti

  • Taraclia

  • Ocnita

  • Cimislia

Cancer & noncancer

1

Zubresti

Cancer & noncancer

1

Chisinau

Cancer

ROMANIA

36

Freestanding or hospital departments, charitable/public/private

Physician and nurse

Cancer & noncancer

19

Freestanding or hospital departments, charitable/public/private

Physician, nurse and social worker

Cancer & noncancer

3

Free-standing or hospital departments, charitable/public/private

Physician and nurse

Cancer & noncancer

4

Freestanding or Hospital departments, charitable/public/private

Nurse, assistant nurse, volunteers

Cancer & noncancer

2

Freestanding or Hospital departments, charitable/public/private

Physician, nurse and social worker

Cancer & noncancer

RUSSIA

62 (1763 beds)

Physician and nurse

Cancer & noncancer

_

_

_

_

_

_

_

_

_

_

_

_

_

_

_

_

SLOVAKIA

11 (277 beds)

Physician and nurse

Cancer & noncancer

_

_

_

_

_

_

_

_

_

_

_

_

_

_

_

_

UKRAINE

58

Most of the regions

3–5 members

Cancer & noncancer

8

Zhytomir, Ivano-Frankivs, Mykolaiv, Ternopil, Kharkiv, Cherkassy, and 2 other regions (no specific confirmation)

3–5 members (depending on the region)

Cancer & noncancer

in all regions of the country

1 nurse and often either a general practitioner or family doctor who is responsible for first visit

7

Volyn, Zhytomir, Zaporozhie, Ivano-Frankivsk, Lviv, Kharkiv, Kherson

3-5 members

Any, except pediatric care

ALBANIA

1

KORCA

15

Cancer

1

KORCA

6

1

KORCA

4

Cancer

GREECE

2

ATTICA AREA

Nurse, physician, social worker, physiotherapist, occupational therapist, psychologist, priest, and Volunteers

  • a) Adult patients with cancer

  • b) Children and teenagers with cancer & noncancer chronic patients

2

ATTICA AREA

Nurse, physician, psychologist

Adult patients with cancer & non-cancer chronic diseases

1

ATTICA AREA

Nurse, physician, social worker, physiotherapist, occupational therapist, psychologist, priest, and volunteers

Adult patients with cancer

SERBIA

3

  • Sombor

  • Zrenjanin

  • Leskovac

  • doctor,

  • nurses,

  • social worker (where available)

All patients in need of PC

57

  • Belgrade

  • (BELhospice)

  • 56 HC services in different cities of Serbia

BELhospice: doctors, nurses, social worker. Psychologist and chaplain are available if needed. Other services mostly consist of doctor and nurses, occasionally a social worker is available

All patients in need of PC

1

  • BELGRADE

  • (Institute for Oncology and Radiology of Serbia)

  • Doctors,

  • nurses,

  • social worker,

  • psychologist

Cancer

Bulgaria: Vratsa—a designated European Society for Medical Oncology (ESMO) center for integration of oncology and palliative care

Vratsa, although not one of the largest cities in the country, has made significant contributions to the development of palliative medicine in Bulgaria. The Vratsa Comprehensive Cancer Center was founded in 1952 and is an important part of the specialized oncology network in Bulgaria. In 1996 the first hospital team and outpatient clinic for the treatment of cancer pain was established, and, based on the work of these teams, the first hospital palliative care department was founded in the country in 1998. The palliative care team comprises doctors, nurses, a psychologist, social worker, lawyer, priest, and volunteers. These individuals provide specialized care for patients with uncontrolled symptoms, especially pain, and management of patients in crisis. The department consists of an inpatient unit with 13 beds, a day center, an outpatient consulting unit, and a center for psychological and social support for patients and families. A school for cancer patients and their families was organized in the palliative care department in 2010, and in 2011 a hotline was established to provide support for crisis management of cancer patients and their families.

From January 7, 2007, to March 6, 2013, there were 2952 hospitalizations with 28,728 hospital days; the average length of a hospital stay was 9.75 days. During this period 372 patients died in the department, and the hospital mortality was 12.6% for the period.

Through a joint international project between Bulgaria and Holland, a postgraduate education program for nurses in palliative care was developed and the department became a place for clinical training for medical students and also a training ground for postgraduate education for nurses studying for a master’s degree. Beginning in 2013 the Palliative Care Department in Vratsa became the main organizer of courses for postgraduate training in palliative care for the country. Clinical trials of drugs, especially for the treatment of pain and other symptoms common in advanced cancer, are conducted in this center. As a result of these efforts the Comprehensive Cancer Center in Vratsa was accredited as a designated center for integration of oncology and palliative care by ESMO in 2011. (Personal communication from Nikolay Yordanov.)

Romania: Hospice Casa Sperantei—a beacon center in the region

Started in 1992 as a palliative care home-based service in Brasov at the initiative of Graham Perolls, Hospice Casa Sperantei (HCS) has quickly moved toward developing and delivering education programs by building in 1997 the Princess Diana Study Centre for Palliative Care. This was possible due to a European grant that has fostered transfer of expertise from British partners at the University of Greenwich and the Ellenor Foundation to HCS and by preparing not just educational materials and curricula but also clinical training to future palliative care trainers. The educational program has been subsequently supported by the Open Society Foundation. Presently, HCS is playing a major role in education in palliative care not just in Romania but also in the whole Eastern European region.

In 1998, HCS was the initiator of the Romanian National Association having the vision of uniting the voices of the few existing palliative care services at that time and building a network and support group for those interested in palliative care.

In 1999, HCS organized the first consensus palliative care meeting, inviting all relevant stakeholders in education (medical university representatives, nursing school leaders, representatives of the education department in the Ministry of Health), media, regulators, authorities, representatives of professional bodies (college of doctors, nursing association). The meeting addressed steps necessary to the development of palliative care in Romania according to the WHO model for public health approach. As a result of the meeting, palliative care was recognized as a medical subspecialty in 1999.

In 2001 through a USAID grant, with support from National Hospice and Palliative Care Association in the United States, the first Romanian standards for palliative care were developed.

In 2002 HCS opened the first comprehensive palliative care service, comprising inpatient services, outpatient clinics, and day centers for adults and children in Brasov. These services were added to the existing home-based services and the education programs.

In research conducted evaluating palliative care services in Eastern Europe,18 Romania was found to be fulfilling the criteria for being a beacon country for palliative care development, and HCS was named as one of the five centers of excellence in palliative care in Eastern Europe. This role has continued over the years through the active involvement of HCS in the support of developing services throughout Romania, but also assisting programs in surrounding countries (e.g., Moldova), as well as advocating for legal changes to allow access to pain medications and inclusion of financial provisions for palliative care within the funding system.

At present HCS offers services to around 2000 patients annually in both Brasov and Bucharest and in the rural area of Brasov County, has trained over 12,000 professionals, and is in the process of opening a new hospice in Bucharest while working with the government to advance a national palliative care program.

Slovenia: milestones in the development of palliative care

The development of palliative care in Slovenia goes back as far as 1995, when the first hospice was created. In 2004 the first palliative hospital teams and first inpatient units were opened. With the help of WHO experts, a draft of the National Program of Palliative Care was produced in 2007 and was later tested in 2009 with support from the Ministry of Health in a pilot project in three Slovenian regions. In 2010 the successful results of this pilot project led the government to adopt the program for the entire country. This was followed by the formation of the Slovenian Palliative Medicine Society in 2011.

Together with education of health professionals, public awareness about the importance of and advances in palliative care has risen. There are many nongovernmental organizations (NGOs) that support the development of palliative care in Slovenia. Internationally two units have been granted the Certification for Excellence in Medical Oncology and Palliative Care. (Personal communication from Maja Ebert Moltara, Mateja Lopuh.).

National policies

For the countries in the region, except Greece, Ukraine, and Slovakia, a national palliative care strategy is approved or in the process of approval. New legislation and policies have been developed to include palliative care in the public healthcare system. Provisions were made for education of both doctors and nurses, approval of service regulations and standards, and funding of services. Belarus is the only country in the region that has developed special provisions for pediatric palliative care.

Serbia: toward a national strategy

The Ministry of Health recognized the need for the development of palliative care services as one of the priorities in the healthcare sector and asked for European Union (EU) support, which materialized through the project Development of Palliative Care Services in Serbia, begun in March 2001. The project is implemented by an international consortium led by Oxford Policy Management (UK), along with BELhospice (Serbia), Hospices of Hope (UK), and Casa Sperantei (Romania).

As a result of the work conducted by members of this project, many changes have happened to advance palliative care in Serbia:

  • Continuous medical education (CME) training in palliative care (Level I—two days and Level II—four days) has been developed and accredited by the Serbian Health Council. To date 1023 staff employed in health institutions and gerontology centers have received Level I and Level II training provided through the scope of this EU-funded project. The Level III clinical training is planned for newly opened palliative care units (PCUs) and started for some units in April 2013.

  • A curriculum has been developed and accepted for undergraduate medical training. A student handbook for the undergraduate medical curriculum for the course has been developed, accepted by four medical schools in Serbia (Belgrade, Nis, Novi Sad, and Kragujevac) as a handbook for undergraduate students, and launched on March 26, 2013.

  • Similarly, an academic curriculum for undergraduate nursing training has been developed and approved. Training materials were translated and sent to higher nursing schools for comments and endorsement. Four of the higher nursing schools have confirmed that they officially agree with the proposed teaching materials and will introduce the course. The palliative care course will be provided to nursing students starting in the next academic year.

  • The first specialty course for social workers involved in the delivery of palliative care services was accredited by the Republican Institute for Social Protection and delivered to a number of social workers working in health institutions. This is currently the only European government-accredited course in palliative care for generalist social workers. Work has also begun with the faculty of political science to integrate palliative care into the undergraduate curriculum for social workers.

  • The process of developing a comprehensive design for the model of care and service delivery appropriate to Serbia began in August 2012. The work is focused on a detailed specification of the model of palliative care delivery including resource and organizational requirements. The final documents will address issues such as assessment of human and other resource input requirements, assessment of workload, operational procedures, quality standards, referral protocols, performance indicators, etc.

  • Government funds for refurbishment of PCUs were disbursed in December 2011 to seven of 13 sites planned for the first phase of funding as per the palliative care strategy. Three of these institutions (Sombor, Zrenjanin, and Leskovac) are open and caring for patients. An additional five institutions were scheduled to receive the funds by the end of July 2013.

  • The essential medicines list for palliative care based on recommendations from the WHO and the International Association for Hospice and Palliative Care (IAHPC) has been developed by the Republican Expert Committee for palliative care and is being put forward for adoption by the Health Insurance Fund.

  • A review of legislation governing palliative care service provision was completed and recommendations for change drafted. In February, the Ministry of Health established a palliative care working group to work on the legislative changes required for the improvement of palliative care services in Serbia.

  • An assessment of the need for children’s palliative care was undertaken, and the first training program on children’s palliative care took place in April 2013. The International Children’s Palliative Care Network developed an online e-learning module on pain in children, linked to the new WHO pain guidelines; this has been translated into Serbian and is now available online.

(Personal communication from Natasa Milicevic, Julia Downing.)

Russia: palliative care for children

On December 24, 2012, an order of the Government of the Russian Federation (№2511-p) was approved, called Program: Development of Health, including Subprogram 6—Palliative Care, Including Children.

Since 2012, there has been a working group for the development of the Order of Provision of Palliative Care for Children; the group includes representatives of the Ministry of Health and various community organizations. The draft of the Order has been uploaded onto the website of the Ministry of Health for public comment.

As a result, in the regions of the Russian Federation there are approximately 30 services that currently provide palliative care for children in hospital and at home (palliative care units, children’s hospices, and palliative care centers for children).

In 2013, for the first time, the Committee of Public Relations of the Moscow government allocated a grant for the provision of palliative care for children and young adults. The recipient was the Foundation for the Development of Palliative Care for Children, created in 2011. Currently, under the patronage of the Foundation there are more than 50 children with terminal illnesses in dire need of palliative care. The Foundation provides professional palliative care for children, aimed at improving their quality of life, and addressing the negative effects of the disease while supporting the entire family. The mobile team of palliative care services for children and young adults includes certified physicians, nurses, a psychologist, and social workers. The Foundation also implements a number of research projects and social development programs for children in Russia. (Personal communication from Kumirova Ella, Savva Natalia.)

Access to medication

The types and formulations of pain medication are variable in the countries in the region. Oral morphine, especially in immediate-release formulations, is not available in Belarus, Moldova, and Russia. Cost is a significant barrier, along with prescribing regulations that limit access to these medications for patients in need (Poland is a notable exception). See Tables 79.3 and 79.4. The total morphine equivalent dose per capita is as low as 1.6 mg per capita in Russia and goes up to 91 mg per capita for Greece.

Table 79.3 National policies

Country

Palliative care (PC) part of the national health program

Funding available to support PC delivery

Y/N

Details

Y/N

Details

BELARUS

YES

PC is part of the Public Health Law: PC for adults with cancer is included in the National Program of Oncology for 2011–2015; PC for children is included in the National Plan for the Advancement of Children’s Rights for 2012–2016.

YES

BULGARIA

YES

PC is part of national anticancer policy and strategic planning and a national program for HIV/AIDS.

YES

Funding from national health insurance fund only for cancer patients

CZECH REPUBLIC

YES

National Strategy for Palliative Care

YES

HUNGARY

YES

YES

POLAND

YES

  • Since 1981, voluntary hospices; in 1998 the Program for Palliative Care was introduced by the Ministry of Health; in 1999 palliative medicine was introduced as a medical specialty; since 2004 palliative nursing has been a nursing specialty.

YES

In 2008, based on the Ministry of Health Order, public expenditure on palliative care increased by approximately 30% (in 2011, by approximately 4%–8%). Since 2004 each citizen is allowed to donate 1% of their annual tax for nonprofit organizations (including hospice-palliative-care-related ones).

REPUBLIC OF MOLDOVA

YES

  • *Order nr. 234 on June 9, 2008, about development of palliative care service in the Republic of Moldova

  • *Order nr. 154 on June 1, 2009, about organization of palliative care services

YES

  • *Order nr. 875 on December 27, 2010, about cost approval of an assisted case in medical palliative care provided in hospital/hospice for 2011

  • *National Insurance Company from Moldova for inpatient units and home-based palliative care services

  • *Order nr. 884 on December 30, 2010, about approval of the National Standard in Palliative Care

  • *Other projects and grants

ROMANIA

YES

New legislation was adopted concerning prescribing of opioid medication, patients’ rights to include access to palliative care, recognition of palliative care as a medical subspecialty, compulsory palliative care module for nursing schools, funding for palliative care as part of the National Frame Contract. Palliative care is in the process of being introduced in the National Health Care Program.

YES

Inpatient units and home-based palliative care services are funded through the insurance fund. Services offering day care can apply for funds for the social services they provide. 2% of taxes can be directed toward charitable work by citizens. Funding is also through charitable donations and international grants.

RUSSIA

YES

The federal law of the Russian Federation, number 323, on November 21, 2011: “On the basis of health protection in the Russian Federation”

YES

The budget and extrabudgetary funds

SLOVAKIA

NO

YES

There is no payment required for palliative care consultation or hospitalization.

UKRAINE

NO

YES

Minimal funding is available at the regional level. No funding at the national level

ALBANIA

YES

The organization is part of National Working Group for Palliative Care

YES

The donators are LCM (Little Company of Mary), DAI (Dorcas Aid International), SOROS Foundation, VAF (Vodafone Albania Fondation).

GREECE

NO

NO

SERBIA

YES

Palliative care strategy was adopted by government in 2009

YES

For patients treated by governmental services. HIF does not fund BELhospice (charity organization) and its work.

Table 79.4

Country

Drug availability

Opioid name

Form of presentation

Do patients pay? (Y/N)

Limitation to prescribing? (Y/N)

Total morphine equivalence mg/capita (1)

BELARUS

  1. 1. Tramadol

  2. 2. Morphine

  3. 3. Fentanyl

  4. 4. Hydromorphone

  1. 1. Short-acting tablets, vials

  2. 2. Vials

  3. 3. Patches, sublingual tablets

  4. 4. Sustained-release tablets

NO

YES

15.8736

BULGARIA

  1. 1. Morphine Ampules

  2. 2. Morphine Tablets

  3. 3. Oxycodone Tablets

  4. 4. Oxycontin

  5. 5. Targin (Oxicodone /Naloxone MR) MR

  6. 6. Victanyl (Fentanyl TDS) Patch

  7. 7. Tramadol Caps; AMP

  8. 8. Dihidrocodeine Tablets

  9. 9. Methadone (for substitution)

  10. 10. Buprenorphine

  11. 11. Lydol (Pethidine)

  12. 12. Fentanyl Injection (for acute therapy)

  13. 13. Sufentanyl Injection (for acute therapy)

  14. 14. Tilidine Injection

  15. (synthetic opioid, in a fixed combination with naloxone)

  16. 15. Paracetamol + Codeine

  17. 16. Paracetamol + Tramadol

  1. 1. Vials—10 mg, 20 mg;

  2. 2. 10 mg, 30 mg, 60 mg, 120 mg

  3. 3. 10 mg; 20 mg;

  4. 4. 10 mg; 20 mg; 40 mg; 80 mg

  5. 5. 10/5; 20/10; 40/20 mg

  6. 6. 20 mcg; 50 mcg; 75 mcg; 100 mcg

  7. 7. 50 mg

  8. 8. 60 mg, 90 mg

  9. 9. Solution

  10. 10. Tablets

  11. 11. Vials

  12. 12. Vials

  13. 13. Vials

  14. 14. 1 mL/50 mg

  15. 15. Tablets

  16. 16. Tablets

  • NO—opioids are free of charge for the treatment of pain in cancer and HIV/AIDS patients.

  • YES, for terminally ill patients with diagnoses other than HIV/AIDS and cancer, opioids are not free of charge; therefore patients are forced to pay full price of the drugs.

YES. There are no limits on the type and amount of prescribed opioids; however, there remain some limitations. Opioids are still prescribed on a special form and may be obtained only from a pharmacy that has a license to dispense opioids.

57.3825

CZECH REPUBLIC

Most opioids are available.

YES

YES

78.2486

HUNGARY

  1. 1. Morphine

  2. 2. Hydromorphone

  3. 3. Oxycodone

  4. 4. Fentanyl

  5. 5. Buprenorphine

  6. 6. Methadone

  7. 7. Codeine

  8. 8. Tramadol

  9. 9. Dihydrocodeine

  10. 10. Dextropropoxyphene

  1. 1. Vials, Tablets

  2. 2. Tablets

  3. 3. Tablets

  4. 4. Patch

  5. 5. Patch

  6. 6. Tablets

  7. 7. Tablets

  8. 8. Tablets, vials, solution, suppositories

  9. 9. Tablets

  10. 10. Tablets

  • NO

  • Cancer patients pay only box fee (about 1 €)

  • YES

  • *Lack of short-acting opioids

  • *Legal regulations has changed—easier prescribing

67.8719

POLAND

  1. 1. Morphine

  2. 2. Oxycodone

  3. 3. Buprenorphine

  4. 4. Fentanyl

  1. 1. Vials, tablets, controlled-release tablets

  2. 2. Vials, tablets, controlled-release tablets

  3. 3. Patches, tablets, vials

  4. 4. Patches, transmucosal formulations

Oxycodone; Fentanyl—those medications received full reimbursement status. Other drugs: copayment by patients at very low level

NO

33.0828

REPUBLIC OF MOLDOVA

  1. 1. Tramadol

  2. 2. Morphine

  3. 3. Omnopon (also Pantopon, a mixture of hydrochlorides of opium alkaloids, containing about 50% morphine)

  1. 1. Immediate-release tablets (50 mg); slow-release tablets (100 mg); solution (100 mg) for parenteral administration

  2. 2. Long-acting tablets (10 mg) and immediate-release solution (1%–1 mL containing 8.6 mg of pure substance) for parenteral administration

  3. 3. Immediate-release solution (2%–1 mL containing 13.4 mg of pure substance) for parenteral administration

YES

YES

7.9308

ROMANIA

  1. 1. Morphine

  2. 2. Hydromorphone

  3. 3. Oxycodone

  4. 4. Dihydrocodeine

  5. 5. Codeine

  6. 6. Pethidine

  7. 7. Fentanyl

  8. 8. Pentazocine

  9. 9. Tramadol

  10. 10. MethadonE

  1. 1. Vials: 20 mg/1 mL; immediate-release tablets: 10 mg, 20 mg; slow-release tablets: 10 mg, 30 mg, 60 mg, 100 mg, 200 mg

  2. 2. Vials: 0.02%/1 mL

  3. 3. Slow-release tablets: 10 mg, 20 mg, 40 mg, 40 mg

  4. 4. Long-acting tablets: 60 mg, 90 mg, 120 mg

  5. 5. Tablets: 15 mg

  6. 6. Vials: 10 mg/2 mL

  7. 7. Patches: 20, 50, 75, 100 µg/h; sublingual tablets: 100, 200, 300, 400, 600, 800 µg/h; amp: 0.05 mg/mL

  8. 8. Vials: 30 mg/mL; tablets: 50 mg

  9. 9. Vials: 50 mg/mL, 100 mg/2 mL; immediate-release tablets: 50 mg; slow-release tablets: 100 mg, 150 mg, 200 mg; suppositories: 100 mg

  10. 10. Tablets: 2.5 mg

NO for cancer patients where cost is 100% or 90% covered by the state. YES for noncancer patients, where just tramadol and oxycodone can be prescribed 50% compensated

Major improvement with the changes in legislation that have taken place since 2007

RUSSIA

  1. 1. Morphine

  2. 2. Tramadol

  3. 3. Trimeperidine (analog of prodine, related to pethidine)

  4. 4. Fentanyl

  5. 5. Codeine in combined preparations

  1. 1. Vials and sustained-release tablets

  2. 2. Vials

  3. 3. Vials

  4. 4. Patch, vials

  5. 5. Tablets

NO

YES

1.6015

SLOVAKIA

Essential medications are generally available throughout Slovakia

YES

YES

67.2112

UKRAINE

  1. 1. Morphine

  2. 2. Buprenorphine

  3. 3. Omnopon (papaverine, morphine, codeine)

  4. 4. Methadone

  5. 5. Fentanyl

  6. 6. Thiopental

  7. 7. Propofol

  8. 8. Tramadol

  1. 1. Vials and tablets

  2. 2. Vials and tablets

  3. 3. Vials

  4. 4. Tablets and syrup

  5. 5. Vials and patch

  6. 6. Vials

  7. 7. Vials

  8. 8. Vials and capsules

YES

9.0964

ALBANIA

1. Morphine

  • 1. Morphine sulfate tablets 10 mg;

  • morphine hydrochloride 10 mg/mL

  • NO

  • Free of charge only for cancer patients

YES

7.3623

GREECE

  1. 1. Morphine

  2. 2. Codeine (+ paracetamol)

  3. 3. Tramadol

  4. 4. Fentanyl

  5. 5. Pethidine Hydrochloride

  6. 6. Nalbuphine Hydrochloride

  1. 1. Powder, vials

  2. 2. Tablets, suppositories

  3. 3. Tablets, oral solution, suppositories, vials

  4. 4. Patch, sublingual tablets, inhaler

  5. 5. Vials

  6. 6. Vials

NO

  • YES

  • Morphine tablets (slow and immediate release) are not available. All opioids need special prescriptions and permission from the local prefecture. Morphine and fentanyl have limitations, by law, in the maximum daily dose.

91.5176

SERBIA

  1. 1. Morphine

  2. 2. Fentanyl

  3. 3. Tramadol

  1. 1. Morphine hydrochloride vials 10 and 20 mg/mL; morphine solution 20 mL (20 mg/mL); morphine unit dose vials 10 mg/5 mL and 30 mg/5 mL

  2. 2. 25 mcg/h, 50 mcg/h, 75 mcg/h and 100 mcg/h

  3. 3. Vials: 50 mg/mL, 100 mg/2mL; capsules: 50 mg; SR tablets: 100, 150, 200 mg

NO

  • YES

  • SR oral morphine is not available. The total amount of controlled substances to be prescribed is limited; designated controlled substances can only be prescribed for a period of 14 days.

37.1569

Greece: reviewing Access to Opioid Medication—the ATOME Project

Greece participated in the Access to Opioid Medication in Europe (ATOME) project, aiming to improve opioid legislation in 12 European countries with low morphine consumption rates. At the National ATOME Conference that was conducted in Athens, palliative care forces in Greece joined their efforts to promote the rights of patients with chronic illnesses. Representatives from scientific societies, palliative care services, and patient organizations agreed on amendments to the law on controlled substances and presented them to the Ministry of Justice and the Greek Parliament. Some of the suggestions were endorsed and, for the first time, there has been a distinction in the law between opioid use for medical reasons and drug abuse. Additionally a physician specialized in palliative care was included in the National Drugs Committee, a government body responsible for developing regulations regarding opioid availability and other restrictions. Finally, an amendment was passed permitting doctors to prescribe, on an emergency basis, opioids at a dose higher than the one defined by the law. (Personal communication from Patiraki Elisabeth, Katsaragakis Stylianos, Tserkezoglou Aliki.)

A win for palliative care in Ukraine

In order to prescribe morphine to a terminally ill cancer patient, a physician in the Ukraine needed a panel of three additional doctors to confirm this need. In May 2013, terminally ill patients and their families in Ukraine received a long-awaited piece of good news. After decades of restrictive drug policies severely limiting access to opioids for pain relief, the Cabinet of Ministers finally lifted burdensome prescription procedures. Decree #333 is a lesson in how doctors, patients, families, and advocacy organizations can work together to improve end-of-life care. The idea of drug control has driven drug policies in Ukraine since Soviet times. Authorities focused on illicit drug use, paying little or no attention to access to opioids like morphine for pain and symptom control. With each new piece of legislation, the doctors and patients faced more and more restrictions and requirements making pain control and management next to impossible in the country.

Doctors were only allowed to prescribe patients 50 milligrams of morphine per day—an arbitrary amount with no basis in medical evidence. In fact, in countries where access to pain relief is a reality, a typical patient with late-stage cancer might get 2,000 mg or more of morphine per day, or whatever is needed to manage his or her pain symptoms. To address these unnecessary restrictions, in mid-2010 the Open Society Foundation launched a joint campaign aimed at reviewing the Ukrainian legislative and regulatory barriers that limit the supply of opioids in health facilities and pharmacies. The review found that in order to prescribe morphine to a terminally ill cancer patient, a physician would need a panel of three additional doctors to confirm this recommendation. Any change in dosage or route needed to be verified by the same panel. Burdensome regulations also surrounded the process for destroying empty morphine vials. Once again, a commission of officials including police officers had to verify that every single vial was accounted for and destroyed.

In effect, these requirements prevented many terminally ill patients from receiving any pain relief. Patients were told that it was too early to start morphine or that by starting morphine they were risking addiction. Doctors resorted to relying on weak analgesics to treat chronic pain. As a result, many terminally ill patients in Ukraine lived with uncontrolled severe pain.

Despite these hurdles, NGO’s working in palliative care and human rights were determined to find a solution that could bring about change quickly and prevent patients from experiencing inhumane and degrading treatment. The Ministry of Interior and State Service for Drug Control were attentive to these concerns and soon joined a working group to review and develop changes to the existing legislation. The working group quickly decided that rather than change old documents it would be more strategic to push for a new policy that would override the old policies and establish new, more progressive norms.

This work was backed up by two reports: a 2010 publication from the International Narcotics Control Board called Availability of Internationally Controlled Drugs: Ensuring Adequate Access for Medical and Scientific Purpose, which highlighted the disproportionately small use of opioids for medical purposes in Ukraine, and the World Health Organization’s Ensuring Balance in National Policies on Controlled Substances, which called on governments to ensure balance between control and access measures. These publications informed the draft legislation, but it still took more than 2 years of intensive advocacy at different levels to push the ministries and other state bodies to agree to these fundamental regulation changes.

During this time advocacy efforts continued, including the Human Rights Watch report Uncontrolled Pain, which sparked national and international media interest. The short film 50 Milligrams Is Not Enough was launched as part of a larger awareness campaign featuring a 27-year-old cancer patient in terrible pain whose mother went to extreme effort in order to get pain relief for her bed-ridden son. This work culminated in the All-Ukrainian League for Palliative Care continually lobbying government officials to change the existing law. Finally, on May 13, 2013, the Cabinet of Ministers passed Decree #333, lifting burdensome procedures for prescribing and accessing opioids. Now:

  • individual physicians can prescribe opioids to patients without panel review;

  • empty vials can be destroyed without commission oversight;

  • per the discretion of chief doctors, facilities can stock up to 1 month’s supply of drugs;

  • physicians must ensure that a patient receives an adequate supply of opioid medications through a prescription that can be filled in local or hospital pharmacies;

  • patients and/or family members can pick up their medication directly from healthcare facilities and store these at home.

This huge change came on the heels of another recent win where the government signed MOH Order #77, allowing use of oral morphine in Ukraine. Of course, this new legislation is not perfect, especially for Ukrainians living in rural areas. In a country that is home to almost 2.4 million people, there are only four pharmacies certified to carry controlled medications such as morphine. Healthcare providers also need education on how to prescribe morphine and other controlled medications, in addition to education for pharmacists about filling such prescriptions. Finally, there is still much work to be done in order to dispel myths about opioid use among patients and families. But at least for now, the realization of true palliative care has made great strides in Ukraine. (Personal communication from Victoria Tymoshevska and Kseniya Shapoval.)

Education in palliative care

Poland and Hungary have palliative care recognized as a subspecialty both for doctors and nurses, whereas Romania and Czech Republic have it officially accredited just for doctors, and Bulgaria and Greece only for nurses. There are more training programs available for continuous medical education for doctors and nurses; countries in the region, excepting Moldova and Russia, are able to provide local continuing education courses. All countries run awareness campaigns for the sensitization of the general public (Table 79.5).

Table 79.5

Education

Country

PC a specialty/subspecialty

CME Courses

PC module included in basic training

PC in media & public advocacy programs

For physicians

For nurses

For other professionals (please name)

For physicians

for nurses

For other professionals (please name)

For physicians

For nurses

For other professionals (name it)

(Y/N)

BELARUS

NO

NO

NO

YES

YES

NO

NO

NO

NO

YES

BULGARIA

NO

YES

  • YES

  • 40 h for psychologists

  • YES

  • 40 h postgraduate training

NO

NO

NO

  • YES

  • 40 h

NO

YES

CZECH REPUBLIC

YES

NO

NO

YES GPs and oncologists

YES, ELNEC courses

NO

YES, oncologists only

NO

NO

YES

HUNGARY

  • YES

  • Licence exam

  • YES

  • Specialty 1 year, 1200 h

NO

YES

  • YES

  • Postgraduate courses 40 h

  • YES

  • Psychologist

  • YES

  • Elective subject in basic training

  • YES

  • (20–40 h)

  • YES

  • Psychotherapist (20 h)

YES

POLAND

YES

YES

YES—Psychologists

YES

YES

YES

YES

YES

YES—Social workers

YES

REPUBLIC OF MOLDOVA

NO

NO

NO

NO

NO

NO

  • YES

  • 40 h

YES

NO

YES

ROMANIA

YES

NO

NO

YES

YES

YES

YES

YES

NO

YES

RUSSIA

NO

NO

NO

NO

NO

NO

NO

NO

NO

YES

SLOVAKIA

NO

NO

NO

YES

YES

NO

NO

NO

NO

YES

UKRAINE

NO

NO

NO

  • YES

  • Varies from 16 to 80 h of training, both clinical and theoretical, in some cases up to 168 h

  • YES

  • Varies from 16 to 80 h of training, both clinical and theoretical

  • YES

  • Social workers, psychologists—varies from 8 to 40 h of training, both clinical and theoretical

YES

YES

  • YES

  • Social workers, psychologists

YES

ALBANIA

NO

NO

NO

  • YES

  • 40 h

  • YES

  • 40 h

NO

  • YES

  • 10 h

  • YES

  • 10 h

NO

YES

GREECE

NO

YES

YES

YES

YES

YES

  • YES

  • Elective 26 h

  • YES

  • 26 h

NO

NO

SERBIA

NO

NO

NO

YES

YES

  • YES

  • Social workers

  • YES

  • 30 h

  • YES

  • 45 h

  • NO

  • Accreditation in progress for social workers

YES

Poland—social education about end-of-life care and call for volunteering

Social support of hospice and palliative care through volunteering are important parts of the modern hospice movement in Poland, but with professionalization of palliative care there was less attention given to voluntary and nonmedical aspects of holistic care.

In 2004 the National Chaplain of Hospices, along with the Hospice Foundation, started a national awareness campaigns regarding end-of-life care, called Hospice Is Life, Too. With participation of the main TV stations and most of the national and regional media, during one month there were around 1000 media events regarding hospice-palliative care and end-of-life issues. Collaborating with over 100 hospice-palliative care centers, all the hospices noticed the following: breaking the taboo of discussing end-of-life issues; promotion of voluntary services for those in need; and increasing fundraising at the national and local levels. As a result of this first campaign, a website was created, serving as the first source of information regarding hospice and palliative care in Poland (www.hospicja.pl).

The second campaign was developed through the participation of 118 hospice-palliative care units, focusing on conversations with patients and families regarding wishes at the end of life. This campaign included public debates and concerts, and was launched during the first International Day of Hospice and Palliative Care Around the World in 2005. Subsequent nationwide campaigns have addressed loss, grief, and bereavement in the mass media and in local meetings. Every campaign has concluded with practical textbooks and monographs regarding the discussed issues, and these have been donated to all hospice-palliative care centers and have been made available for students and the general public.

From 2007 to 2010 educational campaigns have been devoted to hospice volunteering. Hospice Foundation received a grant to train volunteer coordinators from hospices throughout Poland, and more than 100 centers have started this program. Most of them were from rural areas, which wanted to improve the level of their service by involving more trained volunteers.

“I Like to Help”—the training of hospice coordinators—has helped to return vital elements of hospice-palliative care to the existing system in Poland. Information, promotion, and regular recruitment to the voluntary service have been proposed along with training of volunteer coordinators. One of the results of this program has been a number of publications for the coordinators and hospice volunteers. They have been recognized as a great help for volunteers but also for family members and other people who help elderly and handicapped people in their homes. This program has connected schools and universities with local volunteer coordinators and has reached out to these young students. Coordinators have created educational programs with teachers, training about end-of-life issues and recruiting candidates for hospice volunteers. Important volunteer groups, called Volunteers 50+, have emerged while hospice-palliative care centers have reached out to local communities, parishes, and organizations for pensioners with information about possibilities for voluntary service. Centers have noticed an increase in the number of volunteers from this age group, adding their knowledge and experience to existing teams.

The “I Like to Help” program has been a success in teaching local communities and the entire society in Poland about end-of-life issues and also about the need for unifying formal and informal care. In 2012 two books were published analyzing the various activities’ impact on patients and their families, the hospice-palliative care teams, and the local communities. The influence of these efforts on the general public has also been researched. Findings of these scientific publications demonstrate the positive effects of the “I Like to Help” program, regarding hospice-palliative care in Poland, especially nonmedical care, teamwork, and volunteer engagement.

The book The Role of Volunteering in Care at the End of Life reveals possibilities for further development of care for people at the end of life in Poland, using good practices of hospice-palliative care in Poland, that can be extended toward all people dying in institutions and in home care. Expertise in palliative care and a tradition of social support, volunteering, and holistic care could be an answer to the future challenges of an aging society and limited resources for health and social care in Poland and Eastern Europe. (Personal communication from Piotr Krakowiak.)

Romania: education is a drive for change

Palliative care education started in Romania with the opening in 1997 of the Princess Diana Study Centre as part of Hospice Casa Sperantei. Since its founding, this education center has played a pivotal role in preparing the workforce in palliative care in Romania and in the region. Over 12,800 participants from Romania and 18 other countries in the region have attended introductory courses, advanced training programs, and subspecialty courses at the Centre (Figure 79.3).


Figure 79.3 Participants in the palliative care education program.

Figure 79.3 Participants in the palliative care education program.

The education center works with over 100 accredited trainers from all over Romania and is a partner with the University of Transylvania in running the multidisciplinary palliative care master course since 2010.

Since 2012 an online program has been launched for general practitioners with the aim of spreading palliative care approaches within the community. Courses are available in Romanian and in Russian (http://www.studiipaliative.ro/educatie/cursuri-on-line-ro) and an information center offers access to written and video material to lay caregivers (www.infopaliatie.ro).

Conclusion

Eastern Europe is a diverse group of countries, most having been under the rule of the Soviet Republic until the early 1990s. Each country has faced unique challenges in the provision of quality hospice and palliative care, ranging from limited opioid availability to economic hardship. Programs are developing through the dedication and extraordinary efforts of committed professionals. Patients and their families are benefiting from these efforts and many more will continue to receive excellent end-of-life care as education, policy, and clinical advances progress.

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