Vol. 37 No. 3 March 2009
Journal of Pain and Symptom Management
305
Original Article
Barriers to the Development of Palliative Care
in the Countries of Central and Eastern
Europe and the Commonwealth
of Independent States
Thomas 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, PhD
International 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.), Clı́nica
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
Abstract
During 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 palliative
care developments. Since the political changes of the 1990s, however, there has been a steady
development of palliative care services in this region. In 2005, the European Association for
Palliative Care Task Force for the Development of Palliative Care in Europe undertook
a qualitative survey among boards of national associations to identify barriers to the
development of palliative care in CEE and CIS. By July 2006, 44 of 52 (85%) European
countries 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 region
and by the degree of development of palliative care in each country. Four significant barriers
to the development of palliative care were identified: 1) financial and material resources; 2)
problems relating to opioid availability; 3) lack of public awareness and government
recognition of palliative care as a field of specialization; and 4) lack of palliative care
education and training programs. Despite huge variations in the levels of provision across
the countries of CEE and the CIS, data collected in the qualitative survey reveal that the
development 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 Palliative Care in Europe was partly supported by
Mundipharma International. The International Observatory on End of Life Care, the International Association for Hospice and Palliative Care, Help the
Hospices and EAPC also contributed financially or
provided other resources in support of this work.
Ó 2009 U.S. Cancer Pain Relief Committee
Published by Elsevier Inc. All rights reserved.
Address correspondence to: Thomas Lynch, MA. International Observatory on End of Life Care, Institute
for Health Research, Lancaster University, Lancaster LA1 4YT, United Kingdom. E-mail: t.lynch2@
lancaster.ac.uk
Accepted for publication: March 7, 2008.
0885-3924/09/$esee front matter
doi:10.1016/j.jpainsymman.2008.03.011
306
Lynch et al.
Vol. 37 No. 3 March 2009
inadequate investment and limited palliative care service capacity. J Pain Symptom
Manage 2009;37:305e315. Ó 2009 U.S. Cancer Pain Relief Committee. Published by
Elsevier Inc. All rights reserved.
Key Words
Palliative care, barriers, Central/Eastern Europe, Commonwealth of Independent States
Introduction
During the years of communist rule in the
countries of Central and Eastern Europe
(CEE) and the Commonwealth of Independent States (CIS) of Central Asia, there were
few significant palliative care developments.
Since the political changes of the 1990s, however, there has been a steady development of
palliative care services in this region, where
now only a handful of countries have no
known palliative care provision. This is attributed in part to initiatives, such as the Poznan
Declaration in 1998;1 the Eastern and Central
European Palliative Task Force, which commenced in 1999;2 and the European Association for Palliative Care (EAPC) Centre for
Palliative Care in Eastern Europe,3 which began in 2000. A vital source of financial support
to these initiatives and to the successful development of palliative care programs within CEE
and CIS has come from the Open Society Institute Public Health Program.4 Palliative care
development in the region has also been stimulated by the Council of Europe (2003) Report
on Palliative Care (Recommendation Rec 24 of
the Committee of Ministers to member states
on the organization of palliative care).5
Emerging research evidence has begun to
highlight the current state of development of
palliative care in the region. In 2003, Clark
and Wright reviewed the state of development
of hospice and palliative care in 28 countries
of Eastern Europe and Central Asia.6 The
study covered matters of service development,
levels of provision, policy implications, education and training, opioid availability, and local,
national, and international partnerships. This
project was the first step in providing the quantitative and qualitative data needed to frame
palliative care as a serious public health issue
for the countries of CEE and CIS. Since
2003, however, only two comparative studies
of European palliative care development have
emerged, both from Germany. The first study
focused on 11 European countries and was undertaken on behalf of the German parliament;7 the only country reviewed from CEE
was Poland, whereas no CIS countries were included in the study. The second study focused
on 16 European countries and was carried out
by a team of German sociologists at the University of Giessen;8 the CEE countries of the
Czech Republic, Estonia, Hungary, Latvia,
Lithuania, Poland, and Slovakia were reviewed,
as was Ukraine from the CIS.
Against this backdrop, the EAPC Task Force
for the Development of Palliative Care in Europe has produced a set of country reports
that document the existence of palliative care
services country by country, using a common
template that facilitates cross-national and regional comparison, and they have been published as a European ‘‘atlas’’ of palliative care.9
The country reports also have been disseminated through the web pages of the EAPC10
and through links from the web pages of other
participating organizations within the task force
(International Observatory on End of Life Care,
International Association for Hospice and Palliative Care, and Help the Hospices).
Methods
The overall methods of the task force have
been documented in detail elsewhere.11 The
work of the task force has been able to produce,
for the first time, comparative data on the status
of palliative care development across the whole
of the World Health Organization (WHO) European region, covering 52 countries and a population of 879 million people. We report here in
part from a quantitative survey of key experts
within each country who gathered data on the
availability, organization, and delivery of palliative care. In particular, we draw on the results
from a qualitative survey of national associations
Vol. 37 No. 3 March 2009
Barriers to Palliative Care Development in CEE and CIS
undertaken to provide expert opinions and legitimate assessments of the state of palliative
care in each country, showing the achievements
and breakthroughs that have been made, in addition to barriers to the development of the discipline.12 The qualitative survey included
questions relating to opportunities, strengths,
and weaknesses as well as to the viewpoint of
the national associations on current and forthcoming challenges. Some specific questions
were related to the national health policies
and the influence of the Recommendations
on Palliative Care from the Council of Europe5
and issues relating to the availability of opioids
in each country.
Results
Key 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 qualitative survey. In total, 43 European countries responded to both the quantitative and
qualitative survey; one country responded to
the quantitative survey only (Slovakia) and
one country responded to the qualitative survey only (Tajikistan). We report here on the
307
specific results from 22 of 27 (81%) countries
in CEE and CIS. The data have been analyzed
thematically by geographical region and by the
degree of development of palliative care. Each
country has made a specific contribution to
the findings of this paper (for a list of contributors, please see the Acknowledgments
section).
Table 1 draws on the quantitative survey and
presents data on the level of palliative care service provision in the region in 2005.
Although the majority of respondents in the
qualitative survey suggested that there had
been some improvement in the development
of palliative care in their country (for example,
Bosnia Herzegovina), from the varied data
contained within the survey, we identified
four significant barriers to the development
of palliative care in CEE and CIS: 1) financial
and material resources; 2) problems relating
to opioid availability; 3) lack of public awareness and government recognition of palliative care as a field of specialization; and 4)
lack of palliative care education and training
programs.
Financial and Material Resources
The lack of financial and material resources
were referred to as the most significant barrier
Table 1
Level of Palliative Care Service Provision in 2005
Inpatient Palliative
Care Units
Inpatient Hospices
Consultant Teams
in Hospitals
Home Care Teams
Day Centers
Total
Albania
Armenia
Belarus
Bosnia/Herz.
Bulgaria
Croatia
Czech Rep.
Estonia
Georgia
Hungary
Kazakhstan
Latvia
Lithuania
Macedonia
Moldova
Poland
Romania
Russian Fed.
Serbia/Mont.
Slovenia
Tajikistan
Ukraine
0
6
1
0
0
0
0
0
1
10
0
6
6
1
0
69
2
33
0
1
d
5
1
1
3
2
16
0
10
0
0
1
5
0
0
2
0
62
12
74
0
3
d
11
0
12
2
0
0
0
1
0
0
4
0
0
1
2
0
2
4
17
2
2
d
0
4
9
6
1
25
3
4
0
1
28
2
0
3
2
13
262
16
1
3
2
d
2
0
5
0
1
0
0
1
0
2
2
5
2
0
0
1
11
2
0
0
0
d
0
5
33
12
4
41
3
16
0
4
45
12
8
10
7
14
406
36
125
5
8
d
18
Total
141
203
49
387
32
812
308
Lynch et al.
to the development of palliative care in both
CEE and CIS. This had various causes, and
was often intertwined with other issues, such
as organizational and administration difficulties owing to excessive bureaucracy:
The laws have not been favourable for investment into Croatia. In 1996, the German
religious order of Allexianer wanted to invest in the Hospice in Zagreb. Because of
the Croatian laws, they switched to Russia.
In 2000, there was new interest from Canada,
again very favorable, to build the hospice, but
the interest got lost because of problems with
the law. (Croatia)
Others suggested that the lack of palliative
care funding arose from unstable governments. For example, the absence of financial
resources in Tajikistan was reported to be partially as a result of political instability:
Following the disintegration of the USSR
and civil war in Tajikistan, there was a disorder of the state system of rendering freeof-charge medical aid for patients, including
rendering of palliative care to incurable patients. According to the World Bank, the
state pays only 13% of charges on health
care. (Tajikistan)
This related in turn to a succession of
changes in personnel in relevant government
departments:
The most important problem is the instability of leadership. We had in four years four
ministers of health, every one making,
more or less extensive, personal and program changes. (Croatia)
In some countries, a wide range of pressing
social problems (relating to unemployment,
poverty, homelessness, war, and the plight of
refugees) meant that palliative care was a low
priority for attention. For example, in Serbia
and Montenegro:
Due to [a] large number of refugees, invalids and homeless people, we could not
pay sufficient attention to palliative care development.The political and economic situation in the course of the past 15 years
didn’t make it possible for us to calmly, as
a society on the whole, recognize the problems of patients and make an effort to solve
Vol. 37 No. 3 March 2009
them in the best possible way. (Serbia and
Montenegro)
A number of respondents reported that a lack
of finance often made it impossible to either
start or maintain palliative care programs (especially inpatient units). Financial restrictions in
Kazakhstan resulted in the absence of a state
program for palliative care development,
whereas in the Russian Federation, state funding was limited, and there was little capacity to
raise extra resources from other sources, such
as philanthropy or development programs:
. insufficient funding, with the state budget
as the only source merely covering only the
very basic hospice needs and not allowing
for many others, including computerisation,
training for the staff, visits to conferences
etc. The budget financing is insufficient
and rigidly structured, providing for certain
necessities and not providing at all for many
others, whereas the status of a governmental
organisation greatly impedes attracting any
additional funding by the hospices themselves. (Russian Federation)
A number of respondents suggested that
although palliative care was developing within
their country, and had improved in recent
times, there was still much work to be done,
as services were often unevenly spread. The inability to provide comprehensive coverage was
perceived as a barrier to the development of
the discipline in Albania, while in the Czech
Republic:
.quality care for the dying exists but it is
available to a very small proportion of citizens only.Specialized, modern palliative
care in hospices is available to only 1% of
all the terminally ill and dying. (Czech
Republic)
Similar problems in relation to the distribution of palliative care were being experienced
in Poland, where it was reported that there
were still many areas that did not have any access to services:
It may be assumed overall that on a national
scale palliative/hospice care is being given
to approximately 50% of all cases.in certain provinces, the distribution of palliative/hospice care is patchy. In 6 provinces
Vol. 37 No. 3 March 2009
Barriers to Palliative Care Development in CEE and CIS
there are alarmingly large blank spots, administrative districts deprived of home care
or with fewer residential hospices. (Poland)
The absence of state support in Armenia was
reported to severely affect the ability to provide
‘‘necessary and appropriate’’ palliative care coverage, with the need for a wider range of program being of paramount importance:
Being a country with limited resources, Armenia is unable to organize a system of inpatient services for patients in need of pain
management and palliative care, as well as
to open hospices in all the regions of the
country.At present, about 1,500 patients
need daily palliative care and pain management services, but only 30 to 40% of them
can obtain it. (Armenia)
In the Russian Federation, palliative care development was occurring spasmodically across
the country, rather than according to any specific strategy, and this often resulted in large
areas with little coverage; the absence of
a strong national association for palliative
care was seen as a related impediment:
Russia being a vast country, palliative care is
developed very unevenly throughout its territory, greatly depending on the means of
the region and the understanding and goodwill of its officials. The lack of a strong and
effective co-ordination centre, uniting the
hospices and palliative care providers in
the country, giving necessary support and
advocating for their needs with the authorities of all levels, is deeply felt by many. (Russian Federation)
A number of respondents mentioned the
way in which lack of funding had affected specific palliative care services, such as homebased palliative care (Republic of Moldova,
the Czech Republic, and Croatia). In Poland,
the special problems of pediatric and geriatric
palliative care were highlighted:
As regards home care, the criterion has been
only partially fulfilled. In most provinces, it
is present in between 70% and 80% of administrative districts, which means that in
these provinces, 20% to 30% of districts do
not have any home care team, which creates
so called blank spots.[relating to children]
a marked tendency has appeared in the
309
Polish hospice-palliative movement to ‘‘hive
off’’ care to paediatricians and to work on
methods of treatment and care on the basis
of paediatric departments or home care with
the participation of a pediatrician.optimum conditions [need to be created] for
the development of geriatric palliative care,
conditions which at present we do not
have.50% of terminally ill patients are
over the age of 65. Too little attention is
paid to this. (Poland)
Some respondents were more optimistic,
however, about their ability to improve the accessibility of palliative care services in the
future:
The main aim is to spread the hospice/palliative care in those regions of the country
where there is no hospice team now. They
should take care of about 50% of cancer
patients in 10 years. (Hungary)
Problems Relating to Opioid Availability
A second set of problems identified by the
survey related to the lack of availability and
choice of opioids. Inadequate regulatory and
government systems as an impediment to opioid availability were reported from a number
of countries: a lack of state policy on drug
availability in Georgia; a lack of normative documents on the use of drugs in palliative care in
Belarus; and an absence of Ministry of Health
rules relating to the registration and application of opioids in the Republic of Moldova. A
vivid picture emerged from Bulgaria:
Strong opioids are supplied only by the Ministry of Health but some bureaucratic obstacles make the supplies irregular.The strict
requirements from the police authorities
for the pharmacies selling strong opioids,
the high price for the license for selling
such drugs and the risk from burglars are
the reasons for the unwillingness of the biggest part of the local pharmacies not to sell
such drugs. (Bulgaria)
In Belarus and Kazakhstan, there appear to
be complicated procedures relating to the prescribing of opioids, and it was reported to be
very difficult to obtain a license to prescribe
such drugs. Further difficulties relating to the
prescription of opioids were reported from
310
Lynch et al.
Croatia, Latvia, and Poland. Similarly, in the
Russian Federation, there was:
.strict and rigid regulation on strong opioids, very close control of their use involving
a lot of police requirements for their handling and much paperwork for those who
prescribe them [along with] bureaucratic
difficulties when introducing any new forms
of opioids into palliative care practice. (Russian Federation)
Another barrier to the development of palliative care relating to opioids was the prohibitive cost and the lack of available funding
streams (Serbia and Montenegro; Russian Federation). The cost of opioids was reported to
be very high in Armenia and Kazakhstan as
they are not produced in these countries,
and it is difficult to import them owing to government restriction. The prohibitive cost of
opioids in relation to the earning capacity of
the patient was described by the respondent
from Bulgaria:
The high price of the drugs compared with
the incomes of the patients: for example,
morphine SR 60 mg/60tabl costs 248.95lev
(127.66 Euro). Officially, the minimal
month[ly] income is 125lev (63 Euro per
month). (Bulgaria)
A number of respondents also detailed the
stigmatizing and taboo status of opioid use as
a further barrier to the development of palliative care in their country. In Hungary and Slovenia, respondents referred to the fears
expressed about tolerance and side effects of
opioids by physicians, patients, and their families. False beliefs about opioids were said to be
rife in Albania, where there is a long-standing
perception that the use of morphine leads inevitably to the death of the patient. In Serbia
and Montenegro, myths about the dangers of
opioid addiction had been prevalent for
many years:
Vol. 37 No. 3 March 2009
the wider community, where there were close
associations between the use of opioids in palliative care and the psychological or physical
problems of drug addiction. Similarly, in Belarus, there was a lack of information about the
main effects of morphine, which fuels the negative stereotype that strong opioids result inevitably in dependence. In Latvia, lack of
education about the use of opioids among
medical staff and in society in general was a potential barrier to the development of palliative
care, and in the Republic of Macedonia, there
was a reported reluctance on the part of doctors to prescribe the necessary doses of opioids
to terminally ill patients. In the Czech Republic, it was suggested that the main barrier is
the lack of information available to general
practitioners (GPs) about the use of opioids,
combined with their fear of prescribing:
Large numbers of the dying suffer from inadequately controlled pain and from other
physical symptoms, though modern medicine can effectively treat most such problems
.The only barrier is the hesitation and lack
of information about using opioids in pain
therapy among GPs. They are mostly very
afraid about it and do not know how to
use it in pain management. (Czech
Republic)
A lack of choice among different opioids was
reported from Albania, Georgia, the Republic
of Macedonia, and Tajikistan. A similar story
emerged from the Ukraine:
Immediate and slow release oral morphine
and similar forms are not accessible in our
country.Codeine and transdermal fentanyl
are not available. (Ukraine)
Lack of Public Awareness and Government
Recognition of Palliative Care as a Field of
Specialization
Opiophobia of health care professionals and
policy makers as well as patients and their
families.is the result of earlier established
strong prejudices towards opioids. (Serbia
and Montenegro)
Across the region, a number of respondents
reported that the general public was not well
informed about palliative care. For example,
there was a lack of public awareness about
issues of palliative care in Romania, and also
in Georgia where:
A barrier to the development of palliative
care in Georgia was the ‘‘opioid mentality,’’
both among health care professionals and in
.palliative care is a new sphere for our
country. So, public awareness is rather at
a low level. It is necessary to inform people
Vol. 37 No. 3 March 2009
Barriers to Palliative Care Development in CEE and CIS
on the advantages that palliative care provides to incurable patients and their family
members. (Georgia)
It was suggested that a lack of public awareness in the Russian Federation is connected to
long-standing public prejudice about hospices
in the country:
[There is] still poor information, understanding and support in the [wider] society.
Even in St. Petersburg and Moscow, families
and patients often are not aware that any terminal cancer patient is entitled to hospice
care, which is free of charge.Still lots of
prejudice exists, though hospices have long
stopped being considered ‘‘houses of death’’
as it has been in the beginning. Very little
voluntary work for hospices is done in communities, and this is mostly by members of
religious sisterhoods. (Russian Federation)
Even in countries where the public had
developed an awareness of palliative care,
problems of public perception remained. A
respondent from the Czech Republic reported
on the results of a local study:
The public is unhappy with the current state
of care for the dying. Even the best evaluated
area of care (treatment of pain) was judged
[in our survey] as ‘‘good’’ by 7% of respondents only, and as ‘‘rather good’’ by 29%.
There is an alarming discrepancy between
preferences of the public and the actual status of care provided for the terminally ill
and dying in our country: approximately
75% of all deaths occur in health care or social care facilities (hospitals, nursing homes,
retirement homes), yet 80% of those who responded to this question would not want to
die in these institutions.The most critical
in their evaluation of care for the dying are
those who have most experience with it, i.e.,
health care providers and social workers.
And especially those who provide care for
the dying most frequently (oncologists,
workers in nursing homes, retirement homes
and hospices). (Czech Republic)
Another frequently reported problem was
that lack of awareness resulted in a relatively
small number of well-informed ‘‘activists’’ for
palliative care in countries such as Croatia,
and also Slovenia where there are:
311
.insufficient numbers of palliative care
experts, willing to work in palliative care as
care providers and as palliative care
teachers. (Slovenia)
The lack of public awareness relating to palliative care and the failure on the part of
government and the health professions to recognize the discipline as a medical or nursing
specialty was summarized by the respondent
from Ukraine:
.one of the biggest obstacles for developing the hospice system in Ukraine is the
very low level of public.awareness of palliative care. Sources of information about hospices are limited. The general public simply
knows nothing about it or does not believe
that it could be implemented.The ongoing
economic crisis is a big problem for developing hospice care in Ukraine, especially if it
comprises implementation of a hospice network ‘‘from the top’’ that is only by government authorities.there is no certain
government program for the development
of palliative care in Ukraine.Government
supports the idea of palliative care, but it is
still not developed in our country and there
is a lack of legal basis for successful implementation of hospice services.a few professionals know about the existence of hospices
in other countries. Others easily admit hospice principles or have similar ideas.[yet]
there is a considerable group of doctors,
even among oncologists, who suppose the
term ‘‘palliative care’’ means ‘‘non-radical
treatment’’ and comprises only non-radical
surgery and complex active supportive therapy. But they don’t know about established
palliative care schemes of pain control and
using oral forms of opioids, etc. (Ukraine)
Palliative care lacks recognition among medical personnel in Estonia, whereas the negative
attitudes of many health professionals in Russia continue to delay further development of
hospice care, and compounds a sense of isolation from the international hospice movement. A lack of political commitment to the
concept of palliative care was reported in
Belarus:
.we will have a slow pace of hospice movement, until palliative care is recognized at
312
Lynch et al.
the governmental level. Without conceptual
machinery we move from the bottom to the
top. And in this case [our] palliative care
service could not correspond to world standards. That is why we extremely need that
government recognises palliative care as
a branch of the public health service.
(Belarus)
Lack of government recognition was also reported to exist in Georgia, where palliative
care had still to be fully embraced into the
health care system:
It is very important that the development of
palliative care is supported by the governmental structures.Government support
for the development of palliative care was really very important not only from the point
of financing, but also recognition of palliative care as an integral part of the health
care system. (Georgia)
There was a reported lack of government interest in the idea of palliative care in Lithuania
and a failure to acknowledge the importance
of the discipline as a medical specialty in
Serbia and Montenegro:
Palliative care has not been recognized as
a specific discipline by the health care professionals and policy makers. (Serbia and
Montenegro)
Vol. 37 No. 3 March 2009
and quality of life-oriented. (Serbia and
Montenegro)
The lack of government recognition of palliative care as a medical specialty often coincided with a lack of national standards to
regulate and determine palliative care planning and development. For example, there
was reported to be a lack of palliative care legislation in Tajikistan and Lithuania, where
there are no basic documents to regulate and
determine the provision of palliative care; no
classification of palliative care standards at
the national level exist in Slovenia or Armenia;
and there is no national policy or strategy concerning palliative care development in Serbia
and Montenegro or the Republic of Macedonia. Policy and reform changes had a negative
influence on the development of palliative
care services in the Republic of Moldova, while
in Russia there was an:
.absence of developed standards and federal norms regulating the work of hospices
and palliative care practice. The regulations
initially adopted have become outdated and
need serious modification. It is however vital
that the new standards are developed not by
bureaucrats but by reputed hospice practitioners who know the needs of palliative
care in Russia. (Russian Federation)
A further barrier to the development of palliative care relates to its position within a
biomedical worldview and the tendency of
mainstream health services to focus on ‘‘curing’’ disease rather than ‘‘caring’’ for patients.
This was highlighted in Hungary and in this
extract from the Bulgarian respondent:
Lack of coordination was perceived to be
a barrier to the development of palliative
care in countries where the principle of team
work and collaboration in multidisciplinary
teams is not yet recognized as good practice.
The inability to deliver an integrated palliative
care service was reported in Slovenia and also
in Serbia and Montenegro where:
The medical society is still targeting their efforts towards disease treatment at any cost,
still neglecting patients’ quality of life and
thus palliative care. (Bulgaria)
.there is no cooperation between health
care and social care sectors [that is] necessary for good palliative care. (Serbia and
Montenegro)
The medical model was perceived as dominant according to most respondents in the
survey, and was often seen to take priority
over care for the dying patient, as emphasized in this quotation from Serbia and
Montenegro:
Insufficient planning also made it difficult
to deliver homogeneous standards of palliative
care in the Czech Republic, largely owing to
the fact that a number of different bodies are
responsible for specific palliative care services:
.doctors are disease-oriented, focused on
curing the disease, instead of being patient-
Continuity and coordination of care for the
dying are frequently poor. In the last weeks
of their lives patients are frequently being
Vol. 37 No. 3 March 2009
Barriers to Palliative Care Development in CEE and CIS
transferred between various health care
facilities. (Czech Republic)
Finally, there was no monitoring and evaluation of palliative care services in many of the
countries taking part in the survey:
No institution in the Czech Republic currently monitors the quality of care for the
dying.No criteria for this (palliative) care
have yet been developed. (Czech Republic)
Lack of Palliative Care Education
and Training Programs
A further barrier to the development of palliative care in CEE and CIS relates to a lack of
education and training opportunities. In the
Czech Republic, specific concerns were
expressed about the training of doctors in
communication skills:
Communication between physicians and patients regarding diagnosis and prognosis varies
and is generally inadequate.90% of young
physicians interviewed feel that they are not
trained to communicate with the terminally ill
and their families. (Czech Republic)
There were reports of insufficient palliative
care education programs in Latvia and a lack of
education about palliative care for patients and
their families in the Republic of Macedonia. In
Croatia, the need for public education at all
levels relating to palliative care was emphasized,
while in some of the countries in the survey, there
was no palliative care education of any kind:
There exists no education in the field and this
subject has not become a part of medical
schools’ curricula. (Serbia and Montenegro)
Shortages of skilled palliative care staff
owing to lack of education and training were
reported to be affecting the delivery of
palliative care in a number of countries. For
example, insufficient funding resulted in
a lack of skilled/qualified palliative care staff
in Belarus, Georgia, Hungary, and the Republic of Moldova. This was also the case in Latvia
where difficulties were reported in recruiting
doctors, nurses, and allied health care professionals with specialist palliative care training:
Complicated work conditions, lack of experience, and inadequate salaries make medical people avoid this field of care. (Latvia)
313
Palliative care services without professional
certification for physicians and nurses were often perceived by respondents as not being able
to guarantee the best quality of care for patients. Inadequate training of doctors in standards of palliative care was reported from
Albania and Bulgaria, while inconsistencies in
the training of health professionals were also
reported in Poland:
The training of postgraduate students in the
faculties, which train doctors and nurses, follows very varied patterns in different teaching
establishments and depends on decisions
taken autonomously by the authorities of
each institution. (Poland)
In Ukraine, it was reported that there was too
little focus on palliative care within general
medical education; palliative care was not integrated into the obligatory syllabus for medical
or nursing students, or other allied professions:
.there are no special courses on palliative
care for nurses, physicians and social workers
on a regular basis.The existing under- and
post-graduate nurse and doctor education
doesn’t include a palliative care course. That
is why, unfortunately, there are no specialists
in palliative care and other health professionals that can provide elements of palliative
care in their departments. (Ukraine)
Insufficient funding in Croatia had caused
a number of postgraduate studies to be cancelled, with similar problems relating to the
funding of palliative care education and training occurring in Poland:
Since 2003, when financial difficulties in our
country started, postgraduate training is
[only] possible through the support of private sponsors and pharmaceutical companies. The Ministry of Health is only
partially financing training for physicians
specializing in palliative medicine. (Poland)
Lack of finance for palliative care training
and education at medical colleges and universities was also reported from Kazakhstan:
Currently we as Pavlodar hospice representatives and our Almaty colleagues.developed
and introduced a palliative training program for medical students. We are developing a similar program, but due to the lack
314
Lynch et al.
of financing, its development and introduction have been very much prolonged. At
the moment we are planning a seminar for
doctors, hospice managers, and Public
Health Ministry officers. It will include common issues of hospice organizing and palliative psychotherapy. A.V. Gnezdilov, a leading
Russian specialist in the palliative sphere,
has agreed to carry out the seminar, but currently we are concerned with the problem of
financing it. (Kazakhstan)
Discussion
Despite huge variations in the levels of provision across many countries, data collected
in the qualitative survey reveal many common
barriers to development in CEE and CIS. A
lack of financial and material resources resulting from bureaucratic government systems or
political instability was referred to as the
most significant barrier to the development
of palliative care across the region. Many respondents highlighted organizational and administration difficulties owing to excessive
bureaucracy, and a number of them saw the
lack of funding in palliative care as a product
of unstable governments within the context
of wider social transitions from communism
to free market democracies. Inadequate investment in palliative care services had a number
of different implications in the countries concerned, including what were seen as constant
changes to health ministry personnel, an inability to initiate and to maintain palliative
care programs, and an uneven spread of palliative care services that often resulted in a lack
of comprehensive coverage.
Another major barrier to the development
of palliative care in CEE and CIS was the lack
of opioid availability, seen as a product of restrictive procedures and practices, prohibitive
cost, and negative cultural stereotypes held
by health care professionals and members of
the community in relation to the stigmatizing
and taboo status of ‘‘drug addiction.’’ A lack
of awareness about palliative care on the part
of the general public and other health professionals was perceived to be a further barrier to
the development of the field, as was the failure
to recognize palliative care as a field of
Vol. 37 No. 3 March 2009
specialization, or to downplay its value in relation to a more overtly disease-oriented model
of ‘‘cure’’ rather than patient-oriented ‘‘care.’’
Other reported barriers to development included a lack of coordination and integration
of palliative care across health care settings
and services owing to poor national standards
to regulate and determine palliative care planning and development, and a shortage of qualified palliative care staff resulting from a lack
of education and training programs. In sum,
the findings from the qualitative survey suggest
that the development of palliative care in many
countries within CEE and the CIS continues to
remain uneven, uncoordinated, and poorly integrated across wider health care systems,
mainly as a result of inadequate investment
and limited palliative care service capacity.
Acknowledgments
The authors are especially grateful to the following respondents who participated in the
qualitative survey:
Albania: Kristo Huta, President, Albanian
Palliative Care Association.
Armenia: Hrant H. Karapetyan, President,
Armenian Pain Control & Palliative Care
Association.
Belarus: Anna Gorchakova, Director, PCO
Belarusian Children’s Hospice.
Bosnia and Herzegovina: Adnan Delibegovic, Director, Hospice Tuzla.
Bulgaria: Nikolay Radev Yordanov, Secretary,
Bulgarian Association of Palliative Care.
Croatia: Anica Jusic, President, Croatian Society for Hospice and Palliative Care.
Czech Republic: Martina Spinkova, VicePresident, Civic Association Cesta dom
u.
Estonia: Inga Talvik, Children’s Clinic of Tartu University Hospitals.
Georgia: Ioseb Abesadze, Deputy-Chairman,
Cancer Prevention Center.
Hungary: Csaba Simko, Vice-President, Hungarian Hospice Palliative Association.
Kazakhstan: Valeriy Viktorovich Smola, Director and Hospice Manager, NGO Solaris,
Hospice of Pavlodar.
Latvia: Vilnis Sosars, President, Palliative
Care Association of Latvia.
Lithuania: Arvydas Seskevicius, President,
Palliative Medicine Association of Lithuania.
Vol. 37 No. 3 March 2009
Barriers to Palliative Care Development in CEE and CIS
Poland: Krystyna de WaldeneGa1uszko,
President, Polish Association of Palliative
Medicine.
Republic of Macedonia: Mirjana Adzic, National Coordinator for Palliative Care.
Republic of Moldova: Elena Stempovscaia,
President, National Hospice-Palliative Care
Societies of the Republic of Moldova.
Romania: Daniela Mosoiu, President, National Association for Palliative Care.
Russian Federation: The EAPC Eurobarometer respondent from the Russian Federation
requested anonymity.
Serbia and Montenegro: Natasa Milicevic,
Executive Director, Center for Palliative Care
and Palliative Medicine, BELhospice.
Slovenia: Tatjana Zargi, President, Slovenian
Hospice Association.
Tajikistan: Surayo Mirzoeva, Head, Group of
Assistance in the Development of Palliative
Care.
Ukraine: Alexander Zubov, President, Association of Minimally Invasive & Palliative
Therapy.
The following countries in the CEE and CIS
were invited to participate in the qualitative
survey, but returned a nil response: Azerbaijan,
Kyrgyzstan, Slovakia, Turkmenistan, and
Uzbekistan.
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