Barriers to the Development of Palliative Care in the Countries of Central and Eastern Europe and the Commonwealth of Independent States

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Original Article

Barriers to the Development of Palliative Carein the Countries of Central and EasternEurope and the Commonwealthof Independent StatesThomas Lynch, MA, David Clark, PhD, Carlos Centeno, MD, PhD,Javier Rocafort, MD, PhD, Luis Alberto Flores, BA, Anthony Greenwood,David Praill, BA, Simon Brasch, BA, Amelia Giordano, PharmD,Liliana De Lima, MHA, and Michael Wright, PhDInternational Observatory on End of Life Care (T.L., D.C., A.G., M.W.), Institute for Health

Research, Lancaster University, Lancaster, United Kingdom; Palliative Medicine Unit (C.C.), Clınica

Universitaria, University of Navarra, Pamplona, Spain; Regional Palliative Care Program (J.R.),

Extremadura, Spain; Centro de Salud de Medina del Campo (L.A.F.), Valladolid, Spain; Help the

Hospices (D.P., S.B.), London, United Kingdom; European Association for Palliative Care (A.G.),

Milan, Italy; and International Association for Hospice and Palliative Care (L.D.L.), Houston,

Texas, USA

AbstractDuring the years of communist rule in the countries of Central and Eastern Europe (CEE)and the Commonwealth of Independent States (CIS), there were few significant palliativecare developments. Since the political changes of the 1990s, however, there has been a steadydevelopment of palliative care services in this region. In 2005, the European Association forPalliative Care Task Force for the Development of Palliative Care in Europe undertooka qualitative survey among boards of national associations to identify barriers to thedevelopment of palliative care in CEE and CIS. By July 2006, 44 of 52 (85%) Europeancountries had responded to the survey, but we report here on the specific results from 22 of 27(81%) countries in CEE and CIS. Data were analyzed thematically by geographic regionand by the degree of development of palliative care in each country. Four significant barriersto the development of palliative care were identified: 1) financial and material resources; 2)problems relating to opioid availability; 3) lack of public awareness and governmentrecognition of palliative care as a field of specialization; and 4) lack of palliative careeducation and training programs. Despite huge variations in the levels of provision acrossthe countries of CEE and the CIS, data collected in the qualitative survey reveal that thedevelopment of palliative care in many countries continues to remain uneven,uncoordinated, and poorly integrated across wider health care systems, mainly as a result of

The EAPC Task Force on the Development of Palli-ative Care in Europe was partly supported byMundipharma International. The International Ob-servatory on End of Life Care, the International As-sociation for Hospice and Palliative Care, Help theHospices and EAPC also contributed financially orprovided other resources in support of this work.

Address correspondence to: Thomas Lynch, MA. Inter-national Observatory on End of Life Care, Institutefor Health Research, Lancaster University, Lancas-ter LA1 4YT, United Kingdom. E-mail: [email protected]

Accepted for publication: March 7, 2008.

� 2009 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

0885-3924/09/$esee front matterdoi:10.1016/j.jpainsymman.2008.03.011

Vol. 37 No. 3 March 2009 Journal of Pain and Symptom Management 305


inadequate investment and limited palliative care service capacity. J Pain SymptomManage 2009;37:305e315. � 2009 U.S. Cancer Pain Relief Committee. Published byElsevier Inc. All rights reserved.

Key WordsPalliative care, barriers, Central/Eastern Europe, Commonwealth of Independent States

IntroductionDuring the years of communist rule in the

countries of Central and Eastern Europe(CEE) and the Commonwealth of Indepen-dent States (CIS) of Central Asia, there werefew significant palliative care developments.Since the political changes of the 1990s, how-ever, there has been a steady development ofpalliative care services in this region, wherenow only a handful of countries have noknown palliative care provision. This is attrib-uted in part to initiatives, such as the PoznanDeclaration in 1998;1 the Eastern and CentralEuropean Palliative Task Force, which com-menced in 1999;2 and the European Associa-tion for Palliative Care (EAPC) Centre forPalliative Care in Eastern Europe,3 which be-gan in 2000. A vital source of financial supportto these initiatives and to the successful devel-opment of palliative care programs within CEEand CIS has come from the Open Society Insti-tute Public Health Program.4 Palliative caredevelopment in the region has also been stim-ulated by the Council of Europe (2003) Reporton Palliative Care (Recommendation Rec 24 ofthe Committee of Ministers to member stateson the organization of palliative care).5

Emerging research evidence has begun tohighlight the current state of development ofpalliative care in the region. In 2003, Clarkand Wright reviewed the state of developmentof hospice and palliative care in 28 countriesof Eastern Europe and Central Asia.6 Thestudy covered matters of service development,levels of provision, policy implications, educa-tion and training, opioid availability, and local,national, and international partnerships. Thisproject was the first step in providing the quan-titative and qualitative data needed to framepalliative care as a serious public health issuefor the countries of CEE and CIS. Since2003, however, only two comparative studiesof European palliative care development have

emerged, both from Germany. The first studyfocused on 11 European countries and was un-dertaken on behalf of the German parlia-ment;7 the only country reviewed from CEEwas Poland, whereas no CIS countries were in-cluded in the study. The second study focusedon 16 European countries and was carried outby a team of German sociologists at the Univer-sity of Giessen;8 the CEE countries of theCzech Republic, Estonia, Hungary, Latvia,Lithuania, Poland, and Slovakia were reviewed,as was Ukraine from the CIS.

Against this backdrop, the EAPC Task Forcefor the Development of Palliative Care in Eu-rope has produced a set of country reportsthat document the existence of palliative careservices country by country, using a commontemplate that facilitates cross-national and re-gional comparison, and they have been pub-lished as a European ‘‘atlas’’ of palliative care.9

The country reports also have been dissemi-nated through the web pages of the EAPC10

and through links from the web pages of otherparticipating organizations within the task force(International Observatory on End of Life Care,International Association for Hospice and Palli-ative Care, and Help the Hospices).

MethodsThe overall methods of the task force have

been documented in detail elsewhere.11 Thework of the task force has been able to produce,for the first time, comparative data on the statusof palliative care development across the wholeof the World Health Organization (WHO) Eu-ropean region, covering 52 countries and a pop-ulation of 879 million people. We report here inpart from a quantitative survey of key expertswithin each country who gathered data on theavailability, organization, and delivery of pallia-tive care. In particular, we draw on the resultsfrom a qualitative survey of national associations

306 Vol. 37 No. 3 March 2009Lynch et al.


undertaken to provide expert opinions and le-gitimate assessments of the state of palliativecare in each country, showing the achievementsand breakthroughs that have been made, in ad-dition to barriers to the development of the dis-cipline.12 The qualitative survey includedquestions relating to opportunities, strengths,and weaknesses as well as to the viewpoint ofthe national associations on current and forth-coming challenges. Some specific questionswere related to the national health policiesand the influence of the Recommendationson Palliative Care from the Council of Europe5

and issues relating to the availability of opioidsin each country.

ResultsKey experts in 44 of 52 (85%) European

countries responded to the quantitative survey,while national associations in 44 of 52 (85%)European countries responded to the qualita-tive survey. In total, 43 European countries re-sponded to both the quantitative andqualitative survey; one country responded tothe quantitative survey only (Slovakia) andone country responded to the qualitative sur-vey only (Tajikistan). We report here on the

specific results from 22 of 27 (81%) countriesin CEE and CIS. The data have been analyzedthematically by geographical region and by thedegree of development of palliative care. Eachcountry has made a specific contribution tothe findings of this paper (for a list of contrib-utors, please see the Acknowledgmentssection).

Table 1 draws on the quantitative survey andpresents data on the level of palliative care ser-vice provision in the region in 2005.

Although the majority of respondents in thequalitative survey suggested that there hadbeen some improvement in the developmentof palliative care in their country (for example,Bosnia Herzegovina), from the varied datacontained within the survey, we identifiedfour significant barriers to the developmentof palliative care in CEE and CIS: 1) financialand material resources; 2) problems relatingto opioid availability; 3) lack of public aware-ness and government recognition of pallia-tive care as a field of specialization; and 4)lack of palliative care education and trainingprograms.

Financial and Material ResourcesThe lack of financial and material resources

were referred to as the most significant barrier

Table 1Level of Palliative Care Service Provision in 2005

Inpatient PalliativeCare Units Inpatient Hospices

Consultant Teamsin Hospitals Home Care Teams Day Centers Total

Albania 0 1 0 4 0 5Armenia 6 1 12 9 5 33Belarus 1 3 2 6 0 12Bosnia/Herz. 0 2 0 1 1 4Bulgaria 0 16 0 25 0 41Croatia 0 0 0 3 0 3Czech Rep. 0 10 1 4 1 16Estonia 0 0 0 0 0 0Georgia 1 0 0 1 2 4Hungary 10 1 4 28 2 45Kazakhstan 0 5 0 2 5 12Latvia 6 0 0 0 2 8Lithuania 6 0 1 3 0 10Macedonia 1 2 2 2 0 7Moldova 0 0 0 13 1 14Poland 69 62 2 262 11 406Romania 2 12 4 16 2 36Russian Fed. 33 74 17 1 0 125Serbia/Mont. 0 0 2 3 0 5Slovenia 1 3 2 2 0 8Tajikistan d d d d d dUkraine 5 11 0 2 0 18

Total 141 203 49 387 32 812

Vol. 37 No. 3 March 2009 307Barriers to Palliative Care Development in CEE and CIS


to the development of palliative care in bothCEE and CIS. This had various causes, andwas often intertwined with other issues, suchas organizational and administration difficul-ties owing to excessive bureaucracy:

The laws have not been favourable for in-vestment into Croatia. In 1996, the Germanreligious order of Allexianer wanted to in-vest in the Hospice in Zagreb. Because ofthe Croatian laws, they switched to Russia.In 2000, there was new interest from Canada,again very favorable, to build the hospice, butthe interest got lost because of problems withthe law. (Croatia)

Others suggested that the lack of palliativecare funding arose from unstable govern-ments. For example, the absence of financialresources in Tajikistan was reported to be par-tially as a result of political instability:

Following the disintegration of the USSRand civil war in Tajikistan, there was a disor-der of the state system of rendering free-of-charge medical aid for patients, includingrendering of palliative care to incurable pa-tients. According to the World Bank, thestate pays only 13% of charges on healthcare. (Tajikistan)

This related in turn to a succession ofchanges in personnel in relevant governmentdepartments:

The most important problem is the instabil-ity of leadership. We had in four years fourministers of health, every one making,more or less extensive, personal and pro-gram changes. (Croatia)

In some countries, a wide range of pressingsocial problems (relating to unemployment,poverty, homelessness, war, and the plight ofrefugees) meant that palliative care was a lowpriority for attention. For example, in Serbiaand Montenegro:

Due to [a] large number of refugees, in-valids and homeless people, we could notpay sufficient attention to palliative care de-velopment.The political and economic sit-uation in the course of the past 15 yearsdidn’t make it possible for us to calmly, asa society on the whole, recognize the prob-lems of patients and make an effort to solve

them in the best possible way. (Serbia andMontenegro)

A number of respondents reported that a lackof finance often made it impossible to eitherstart or maintain palliative care programs (espe-cially inpatient units). Financial restrictions inKazakhstan resulted in the absence of a stateprogram for palliative care development,whereas in the Russian Federation, state fund-ing was limited, and there was little capacity toraise extra resources from other sources, suchas philanthropy or development programs:

. insufficient funding, with the state budgetas the only source merely covering only thevery basic hospice needs and not allowingfor many others, including computerisation,training for the staff, visits to conferencesetc. The budget financing is insufficientand rigidly structured, providing for certainnecessities and not providing at all for manyothers, whereas the status of a governmentalorganisation greatly impedes attracting anyadditional funding by the hospices them-selves. (Russian Federation)

A number of respondents suggested thatalthough palliative care was developing withintheir country, and had improved in recenttimes, there was still much work to be done,as services were often unevenly spread. The in-ability to provide comprehensive coverage wasperceived as a barrier to the development ofthe discipline in Albania, while in the CzechRepublic:

.quality care for the dying exists but it isavailable to a very small proportion of citi-zens only.Specialized, modern palliativecare in hospices is available to only 1% ofall the terminally ill and dying. (CzechRepublic)

Similar problems in relation to the distribu-tion of palliative care were being experiencedin Poland, where it was reported that therewere still many areas that did not have any ac-cess to services:

It may be assumed overall that on a nationalscale palliative/hospice care is being givento approximately 50% of all cases.in cer-tain provinces, the distribution of pallia-tive/hospice care is patchy. In 6 provinces



there are alarmingly large blank spots, ad-ministrative districts deprived of home careor with fewer residential hospices. (Poland)

The absence of state support in Armenia wasreported to severely affect the ability to provide‘‘necessary and appropriate’’ palliative care cov-erage, with the need for a wider range of pro-gram being of paramount importance:

Being a country with limited resources, Ar-menia is unable to organize a system of inpa-tient services for patients in need of painmanagement and palliative care, as well asto open hospices in all the regions of thecountry.At present, about 1,500 patientsneed daily palliative care and pain manage-ment services, but only 30 to 40% of themcan obtain it. (Armenia)

In the Russian Federation, palliative care de-velopment was occurring spasmodically acrossthe country, rather than according to any spe-cific strategy, and this often resulted in largeareas with little coverage; the absence ofa strong national association for palliativecare was seen as a related impediment:

Russia being a vast country, palliative care isdeveloped very unevenly throughout its ter-ritory, greatly depending on the means ofthe region and the understanding and good-will of its officials. The lack of a strong andeffective co-ordination centre, uniting thehospices and palliative care providers inthe country, giving necessary support andadvocating for their needs with the authori-ties of all levels, is deeply felt by many. (Rus-sian Federation)

A number of respondents mentioned theway in which lack of funding had affected spe-cific palliative care services, such as home-based palliative care (Republic of Moldova,the Czech Republic, and Croatia). In Poland,the special problems of pediatric and geriatricpalliative care were highlighted:

As regards home care, the criterion has beenonly partially fulfilled. In most provinces, itis present in between 70% and 80% of ad-ministrative districts, which means that inthese provinces, 20% to 30% of districts donot have any home care team, which createsso called blank spots.[relating to children]a marked tendency has appeared in the

Polish hospice-palliative movement to ‘‘hiveoff’’ care to paediatricians and to work onmethods of treatment and care on the basisof paediatric departments or home care withthe participation of a pediatrician.opti-mum conditions [need to be created] forthe development of geriatric palliative care,conditions which at present we do nothave.50% of terminally ill patients areover the age of 65. Too little attention ispaid to this. (Poland)

Some respondents were more optimistic,however, about their ability to improve the ac-cessibility of palliative care services in thefuture:

The main aim is to spread the hospice/pal-liative care in those regions of the countrywhere there is no hospice team now. Theyshould take care of about 50% of cancerpatients in 10 years. (Hungary)

Problems Relating to Opioid AvailabilityA second set of problems identified by the

survey related to the lack of availability andchoice of opioids. Inadequate regulatory andgovernment systems as an impediment to opi-oid availability were reported from a numberof countries: a lack of state policy on drugavailability in Georgia; a lack of normative doc-uments on the use of drugs in palliative care inBelarus; and an absence of Ministry of Healthrules relating to the registration and applica-tion of opioids in the Republic of Moldova. Avivid picture emerged from Bulgaria:

Strong opioids are supplied only by the Min-istry of Health but some bureaucratic obsta-cles make the supplies irregular.The strictrequirements from the police authoritiesfor the pharmacies selling strong opioids,the high price for the license for sellingsuch drugs and the risk from burglars arethe reasons for the unwillingness of the big-gest part of the local pharmacies not to sellsuch drugs. (Bulgaria)

In Belarus and Kazakhstan, there appear tobe complicated procedures relating to the pre-scribing of opioids, and it was reported to bevery difficult to obtain a license to prescribesuch drugs. Further difficulties relating to theprescription of opioids were reported from



Croatia, Latvia, and Poland. Similarly, in theRussian Federation, there was:

.strict and rigid regulation on strong opi-oids, very close control of their use involvinga lot of police requirements for their han-dling and much paperwork for those whoprescribe them [along with] bureaucraticdifficulties when introducing any new formsof opioids into palliative care practice. (Rus-sian Federation)

Another barrier to the development of palli-ative care relating to opioids was the prohibi-tive cost and the lack of available fundingstreams (Serbia and Montenegro; Russian Fed-eration). The cost of opioids was reported tobe very high in Armenia and Kazakhstan asthey are not produced in these countries,and it is difficult to import them owing to gov-ernment restriction. The prohibitive cost ofopioids in relation to the earning capacity ofthe patient was described by the respondentfrom Bulgaria:

The high price of the drugs compared withthe incomes of the patients: for example,morphine SR 60 mg/60tabl costs 248.95lev(127.66 Euro). Officially, the minimalmonth[ly] income is 125lev (63 Euro permonth). (Bulgaria)

A number of respondents also detailed thestigmatizing and taboo status of opioid use asa further barrier to the development of pallia-tive care in their country. In Hungary and Slov-enia, respondents referred to the fearsexpressed about tolerance and side effects ofopioids by physicians, patients, and their fami-lies. False beliefs about opioids were said to berife in Albania, where there is a long-standingperception that the use of morphine leads in-evitably to the death of the patient. In Serbiaand Montenegro, myths about the dangers ofopioid addiction had been prevalent formany years:

Opiophobia of health care professionals andpolicy makers as well as patients and theirfamilies.is the result of earlier establishedstrong prejudices towards opioids. (Serbiaand Montenegro)

A barrier to the development of palliativecare in Georgia was the ‘‘opioid mentality,’’both among health care professionals and in

the wider community, where there were closeassociations between the use of opioids in pal-liative care and the psychological or physicalproblems of drug addiction. Similarly, in Bela-rus, there was a lack of information about themain effects of morphine, which fuels the neg-ative stereotype that strong opioids result inev-itably in dependence. In Latvia, lack ofeducation about the use of opioids amongmedical staff and in society in general was a po-tential barrier to the development of palliativecare, and in the Republic of Macedonia, therewas a reported reluctance on the part of doc-tors to prescribe the necessary doses of opioidsto terminally ill patients. In the Czech Repub-lic, it was suggested that the main barrier isthe lack of information available to generalpractitioners (GPs) about the use of opioids,combined with their fear of prescribing:

Large numbers of the dying suffer from in-adequately controlled pain and from otherphysical symptoms, though modern medi-cine can effectively treat most such problems.The only barrier is the hesitation and lackof information about using opioids in paintherapy among GPs. They are mostly veryafraid about it and do not know how touse it in pain management. (CzechRepublic)

A lack of choice among different opioids wasreported from Albania, Georgia, the Republicof Macedonia, and Tajikistan. A similar storyemerged from the Ukraine:

Immediate and slow release oral morphineand similar forms are not accessible in ourcountry.Codeine and transdermal fentanylare not available. (Ukraine)

Lack of Public Awareness and GovernmentRecognition of Palliative Care as a Field ofSpecialization

Across the region, a number of respondentsreported that the general public was not wellinformed about palliative care. For example,there was a lack of public awareness aboutissues of palliative care in Romania, and alsoin Georgia where:

.palliative care is a new sphere for ourcountry. So, public awareness is rather ata low level. It is necessary to inform people



on the advantages that palliative care pro-vides to incurable patients and their familymembers. (Georgia)

It was suggested that a lack of public aware-ness in the Russian Federation is connected tolong-standing public prejudice about hospicesin the country:

[There is] still poor information, under-standing and support in the [wider] society.Even in St. Petersburg and Moscow, familiesand patients often are not aware that any ter-minal cancer patient is entitled to hospicecare, which is free of charge.Still lots ofprejudice exists, though hospices have longstopped being considered ‘‘houses of death’’as it has been in the beginning. Very littlevoluntary work for hospices is done in com-munities, and this is mostly by members ofreligious sisterhoods. (Russian Federation)

Even in countries where the public haddeveloped an awareness of palliative care,problems of public perception remained. Arespondent from the Czech Republic reportedon the results of a local study:

The public is unhappy with the current stateof care for the dying. Even the best evaluatedarea of care (treatment of pain) was judged[in our survey] as ‘‘good’’ by 7% of respon-dents only, and as ‘‘rather good’’ by 29%.There is an alarming discrepancy betweenpreferences of the public and the actual sta-tus of care provided for the terminally illand dying in our country: approximately75% of all deaths occur in health care or so-cial care facilities (hospitals, nursing homes,retirement homes), yet 80% of those who re-sponded to this question would not want todie in these institutions.The most criticalin their evaluation of care for the dying arethose who have most experience with it, i.e.,health care providers and social workers.And especially those who provide care forthe dying most frequently (oncologists,workers in nursing homes, retirement homesand hospices). (Czech Republic)

Another frequently reported problem wasthat lack of awareness resulted in a relativelysmall number of well-informed ‘‘activists’’ forpalliative care in countries such as Croatia,and also Slovenia where there are:

.insufficient numbers of palliative careexperts, willing to work in palliative care ascare providers and as palliative careteachers. (Slovenia)

The lack of public awareness relating to pal-liative care and the failure on the part ofgovernment and the health professions to rec-ognize the discipline as a medical or nursingspecialty was summarized by the respondentfrom Ukraine:

.one of the biggest obstacles for develop-ing the hospice system in Ukraine is thevery low level of public.awareness of pallia-tive care. Sources of information about hos-pices are limited. The general public simplyknows nothing about it or does not believethat it could be implemented.The ongoingeconomic crisis is a big problem for develop-ing hospice care in Ukraine, especially if itcomprises implementation of a hospice net-work ‘‘from the top’’ that is only by govern-ment authorities.there is no certaingovernment program for the developmentof palliative care in Ukraine.Governmentsupports the idea of palliative care, but it isstill not developed in our country and thereis a lack of legal basis for successful imple-mentation of hospice services.a few profes-sionals know about the existence of hospicesin other countries. Others easily admit hos-pice principles or have similar ideas.[yet]there is a considerable group of doctors,even among oncologists, who suppose theterm ‘‘palliative care’’ means ‘‘non-radicaltreatment’’ and comprises only non-radicalsurgery and complex active supportive ther-apy. But they don’t know about establishedpalliative care schemes of pain control andusing oral forms of opioids, etc. (Ukraine)

Palliative care lacks recognition among med-ical personnel in Estonia, whereas the negativeattitudes of many health professionals in Rus-sia continue to delay further development ofhospice care, and compounds a sense of isola-tion from the international hospice move-ment. A lack of political commitment to theconcept of palliative care was reported inBelarus:

.we will have a slow pace of hospice move-ment, until palliative care is recognized at



the governmental level. Without conceptualmachinery we move from the bottom to thetop. And in this case [our] palliative careservice could not correspond to world stan-dards. That is why we extremely need thatgovernment recognises palliative care asa branch of the public health service.(Belarus)

Lack of government recognition was also re-ported to exist in Georgia, where palliativecare had still to be fully embraced into thehealth care system:

It is very important that the development ofpalliative care is supported by the govern-mental structures.Government supportfor the development of palliative care was re-ally very important not only from the pointof financing, but also recognition of pallia-tive care as an integral part of the healthcare system. (Georgia)

There was a reported lack of government in-terest in the idea of palliative care in Lithuaniaand a failure to acknowledge the importanceof the discipline as a medical specialty inSerbia and Montenegro:

Palliative care has not been recognized asa specific discipline by the health care pro-fessionals and policy makers. (Serbia andMontenegro)

A further barrier to the development of pal-liative care relates to its position within abiomedical worldview and the tendency ofmainstream health services to focus on ‘‘cur-ing’’ disease rather than ‘‘caring’’ for patients.This was highlighted in Hungary and in thisextract from the Bulgarian respondent:

The medical society is still targeting their ef-forts towards disease treatment at any cost,still neglecting patients’ quality of life andthus palliative care. (Bulgaria)

The medical model was perceived as dom-inant according to most respondents in thesurvey, and was often seen to take priorityover care for the dying patient, as empha-sized in this quotation from Serbia andMontenegro:

.doctors are disease-oriented, focused oncuring the disease, instead of being patient-

and quality of life-oriented. (Serbia andMontenegro)

The lack of government recognition of palli-ative care as a medical specialty often coin-cided with a lack of national standards toregulate and determine palliative care plan-ning and development. For example, therewas reported to be a lack of palliative care leg-islation in Tajikistan and Lithuania, wherethere are no basic documents to regulate anddetermine the provision of palliative care; noclassification of palliative care standards atthe national level exist in Slovenia or Armenia;and there is no national policy or strategy con-cerning palliative care development in Serbiaand Montenegro or the Republic of Macedo-nia. Policy and reform changes had a negativeinfluence on the development of palliativecare services in the Republic of Moldova, whilein Russia there was an:

.absence of developed standards and fed-eral norms regulating the work of hospicesand palliative care practice. The regulationsinitially adopted have become outdated andneed serious modification. It is however vitalthat the new standards are developed not bybureaucrats but by reputed hospice practi-tioners who know the needs of palliativecare in Russia. (Russian Federation)

Lack of coordination was perceived to bea barrier to the development of palliativecare in countries where the principle of teamwork and collaboration in multidisciplinaryteams is not yet recognized as good practice.The inability to deliver an integrated palliativecare service was reported in Slovenia and alsoin Serbia and Montenegro where:

.there is no cooperation between healthcare and social care sectors [that is] neces-sary for good palliative care. (Serbia andMontenegro)

Insufficient planning also made it difficultto deliver homogeneous standards of palliativecare in the Czech Republic, largely owing tothe fact that a number of different bodies areresponsible for specific palliative care services:

Continuity and coordination of care for thedying are frequently poor. In the last weeksof their lives patients are frequently being



transferred between various health carefacilities. (Czech Republic)

Finally, there was no monitoring and evalua-tion of palliative care services in many of thecountries taking part in the survey:

No institution in the Czech Republic cur-rently monitors the quality of care for thedying.No criteria for this (palliative) carehave yet been developed. (Czech Republic)

Lack of Palliative Care Educationand Training Programs

A further barrier to the development of pal-liative care in CEE and CIS relates to a lack ofeducation and training opportunities. In theCzech Republic, specific concerns wereexpressed about the training of doctors incommunication skills:

Communication between physicians and pa-tients regarding diagnosis and prognosis variesand is generally inadequate.90% of youngphysicians interviewed feel that they are nottrained to communicate with the terminally illand their families. (Czech Republic)

There were reports of insufficient palliativecare education programs in Latvia and a lack ofeducation about palliative care for patients andtheir families in the Republic of Macedonia. InCroatia, the need for public education at alllevels relating to palliative care was emphasized,while in some of the countries in the survey, therewas no palliative care education of any kind:

There exists no education in the field and thissubject has not become a part of medicalschools’ curricula. (Serbia and Montenegro)

Shortages of skilled palliative care staffowing to lack of education and training werereported to be affecting the delivery ofpalliative care in a number of countries. Forexample, insufficient funding resulted ina lack of skilled/qualified palliative care staffin Belarus, Georgia, Hungary, and the Repub-lic of Moldova. This was also the case in Latviawhere difficulties were reported in recruitingdoctors, nurses, and allied health care profes-sionals with specialist palliative care training:

Complicated work conditions, lack of expe-rience, and inadequate salaries make medi-cal people avoid this field of care. (Latvia)

Palliative care services without professionalcertification for physicians and nurses were of-ten perceived by respondents as not being ableto guarantee the best quality of care for pa-tients. Inadequate training of doctors in stan-dards of palliative care was reported fromAlbania and Bulgaria, while inconsistencies inthe training of health professionals were alsoreported in Poland:

The training of postgraduate students in thefaculties, which train doctors and nurses, fol-lows very varied patterns in different teachingestablishments and depends on decisionstaken autonomously by the authorities ofeach institution. (Poland)

In Ukraine, it was reported that there was toolittle focus on palliative care within generalmedical education; palliative care was not inte-grated into the obligatory syllabus for medicalor nursing students, or other allied professions:

.there are no special courses on palliativecare for nurses, physicians and social workerson a regular basis.The existing under- andpost-graduate nurse and doctor educationdoesn’t include a palliative care course. Thatis why, unfortunately, there are no specialistsin palliative care and other health profes-sionals that can provide elements of palliativecare in their departments. (Ukraine)

Insufficient funding in Croatia had causeda number of postgraduate studies to be can-celled, with similar problems relating to thefunding of palliative care education and train-ing occurring in Poland:

Since 2003, when financial difficulties in ourcountry started, postgraduate training is[only] possible through the support of pri-vate sponsors and pharmaceutical compa-nies. The Ministry of Health is onlypartially financing training for physiciansspecializing in palliative medicine. (Poland)

Lack of finance for palliative care trainingand education at medical colleges and univer-sities was also reported from Kazakhstan:

Currently we as Pavlodar hospice representa-tives and our Almaty colleagues.developedand introduced a palliative training pro-gram for medical students. We are develop-ing a similar program, but due to the lack



of financing, its development and introduc-tion have been very much prolonged. Atthe moment we are planning a seminar fordoctors, hospice managers, and PublicHealth Ministry officers. It will include com-mon issues of hospice organizing and pallia-tive psychotherapy. A.V. Gnezdilov, a leadingRussian specialist in the palliative sphere,has agreed to carry out the seminar, but cur-rently we are concerned with the problem offinancing it. (Kazakhstan)

DiscussionDespite huge variations in the levels of pro-

vision across many countries, data collectedin the qualitative survey reveal many commonbarriers to development in CEE and CIS. Alack of financial and material resources result-ing from bureaucratic government systems orpolitical instability was referred to as themost significant barrier to the developmentof palliative care across the region. Many re-spondents highlighted organizational and ad-ministration difficulties owing to excessivebureaucracy, and a number of them saw thelack of funding in palliative care as a productof unstable governments within the contextof wider social transitions from communismto free market democracies. Inadequate invest-ment in palliative care services had a numberof different implications in the countries con-cerned, including what were seen as constantchanges to health ministry personnel, an in-ability to initiate and to maintain palliativecare programs, and an uneven spread of palli-ative care services that often resulted in a lackof comprehensive coverage.

Another major barrier to the developmentof palliative care in CEE and CIS was the lackof opioid availability, seen as a product of re-strictive procedures and practices, prohibitivecost, and negative cultural stereotypes heldby health care professionals and members ofthe community in relation to the stigmatizingand taboo status of ‘‘drug addiction.’’ A lackof awareness about palliative care on the partof the general public and other health profes-sionals was perceived to be a further barrier tothe development of the field, as was the failureto recognize palliative care as a field of

specialization, or to downplay its value in rela-tion to a more overtly disease-oriented modelof ‘‘cure’’ rather than patient-oriented ‘‘care.’’Other reported barriers to development in-cluded a lack of coordination and integrationof palliative care across health care settingsand services owing to poor national standardsto regulate and determine palliative care plan-ning and development, and a shortage of qual-ified palliative care staff resulting from a lackof education and training programs. In sum,the findings from the qualitative survey suggestthat the development of palliative care in manycountries within CEE and the CIS continues toremain uneven, uncoordinated, and poorly in-tegrated across wider health care systems,mainly as a result of inadequate investmentand limited palliative care service capacity.

AcknowledgmentsThe authors are especially grateful to the fol-

lowing respondents who participated in thequalitative survey:

Albania: Kristo Huta, President, AlbanianPalliative Care Association.

Armenia: Hrant H. Karapetyan, President,Armenian Pain Control & Palliative CareAssociation.

Belarus: Anna Gorchakova, Director, PCOBelarusian Children’s Hospice.

Bosnia and Herzegovina: Adnan Delibe-govic, Director, Hospice Tuzla.

Bulgaria: Nikolay Radev Yordanov, Secretary,Bulgarian Association of Palliative Care.

Croatia: Anica Jusic, President, Croatian So-ciety for Hospice and Palliative Care.

Czech Republic: Martina Spinkova, Vice-President, Civic Association Cesta dom�u.

Estonia: Inga Talvik, Children’s Clinic of Tar-tu University Hospitals.

Georgia: Ioseb Abesadze, Deputy-Chairman,Cancer Prevention Center.

Hungary: Csaba Simko, Vice-President, Hun-garian Hospice Palliative Association.

Kazakhstan: Valeriy Viktorovich Smola, Di-rector and Hospice Manager, NGO Solaris,Hospice of Pavlodar.

Latvia: Vilnis Sosars, President, PalliativeCare Association of Latvia.

Lithuania: Arvydas Seskevicius, President,Palliative Medicine Association of Lithuania.



Poland: Krystyna de WaldeneGa1uszko,President, Polish Association of PalliativeMedicine.

Republic of Macedonia: Mirjana Adzic, Na-tional Coordinator for Palliative Care.

Republic of Moldova: Elena Stempovscaia,President, National Hospice-Palliative CareSocieties of the Republic of Moldova.

Romania: Daniela Mosoiu, President, Na-tional Association for Palliative Care.

Russian Federation: The EAPC Eurobarome-ter respondent from the Russian Federationrequested anonymity.

Serbia and Montenegro: Natasa Milicevic,Executive Director, Center for Palliative Careand Palliative Medicine, BELhospice.

Slovenia: Tatjana Zargi, President, SlovenianHospice Association.

Tajikistan: Surayo Mirzoeva, Head, Group ofAssistance in the Development of PalliativeCare.

Ukraine: Alexander Zubov, President, Asso-ciation of Minimally Invasive & PalliativeTherapy.

The following countries in the CEE and CISwere invited to participate in the qualitativesurvey, but returned a nil response: Azerbaijan,Kyrgyzstan, Slovakia, Turkmenistan, andUzbekistan.

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Barriers to the Development of Palliative Care in the Countries of Central and Eastern Europe and the Commonwealth of Independent States

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