THE DEVELOPMENT OF PALLIATIVE CARE PROVISION, GUIDELINES AND POLICY IN TWELVE COUNTRIES OF EASTERN EUROPE AND CENTRAL AS

1. OSI Palliative Care Policy Development Conference THE DEVELOPMENT OF PALLIATIVE CARE PROVISION, GUIDELINES AND POLICY IN TWELVE COUNTRIES OF EASTERN EUROPE AND CENTRAL ASIA Michael Wright International Observatory on End of Life Care Lancaster University, UK 16-18 October 2003 Budapest

2. Background: OSI commission

3. Palliative Care in Central/Eastern Europe and Central Asia, 2002 • Albania • Armenia • Azerbaijan • Belarus • Bosnia-Herz • Bulgaria • Croatia • Czech Rep • Estonia • Georgia • Hungary • Kazakhstan • Kyrgyzstan • Latvia • Lithuania • Macedonia • Moldova • Mongolia • Poland • Romania • Serbia • Montenegro • Russia • Slovakia • Slovenia • Tajikistan • Uzbekistan • Ukraine

4. Palliative Care in Central/Eastern Europe and Central Asia, 2002

5. Palliative Care in Central/Eastern Europe and Central Asia, 2002

6. The International Observatory on End of Life Care • Hospice and palliative care development in every country has much to gain from an international perspective… a vital spur to this could take the form of an International Observatory, based on the world wide web www.eolc-observatory.net

7. Aims of the International Observatory • To provide clear and accessible research-based information • To disseminate this information through the Observatory website and through other means • To undertake primary research studies and reviews to generate such information • To develop a small grants programme to support academic work relating to the aims of the Observatory in resource poor regions • To work in partnership with key organisations and individuals, nationally and internationally www.eolc-observatory.net

26. The survey The countries Bulgaria, Croatia, Czech Republic, Georgia, Hungary, Lithuania, Moldova, Mongolia, Poland, Romania, Slovakia, Slovenia (12) The regions The Balkans, Baltics, Central Europe, Eastern Europe, Trans-Caucasia, Central Asia (6) Method -cross-sectional, descriptive survey -email questionnaire -named individual -each of 12 countries -100%response rate

27. Common features Processes of transition -movement towards democracy -movement towards market economy -health systems de-centralising -insurance-based models of re-imbursement gaining ground -change in attitudes ‘We learned in [nursing] school that you are not allowed to touch if the patient has a wound or a fever. You have to try to keep yourself safe. So patients were really surprised when somebody comes and takes their hands, shares their grief. It was something new…’ Gabriela Ticu,(Romania)

28. Common features Processes of transition -movement towards democracy -movement towards market economy -heath systems de-centralising -insurance-based models of re-imbursement gaining ground -change in attitudes To the ‘ethos’ of solidarity as a social, economic and political movement was added the ‘ethos’ of the hospice movement, as a symbol of humanity’ Luczak J (1993) Palliative/hospice care in Poland. Palliative Medicine 7: 68

29. Common features Standardised death rates, all ages per 100,000 both sexes, 2001

30. Differences

31. Services: adult Key points Poland has the broadest range and greatest number of palliative care services. Home care features prominently in 9/12 countries. Lithuania has 82 nursing home services

32. Services: paediatric Key points Home care services feature most prominently, especially in Poland; 4/12 countries make no palliative care provision for children; only 4/12 countries have more than 1 paediatric palliative care service

33. Palliative care association Key point 11/12 countries have a national hospice/palliative care association

34. Certification program Key points 6/12 countries have a certification program for doctors; 4/12 for nurses. Only Hungary and Poland has programs for doctors, nurses and other professionals

35. Palliative care standards Key points Hungary and Poland are the only countries with standards in place for inpatient, home care and other palliative care programs. Mongolia has developed palliative care standards in the ‘other’ category. Inpatient Standards are being developed in 4/12 countries and home care standards in 6/12 countries

36. National guidelines Key points All countries except Romania have national guidelines for the management of acute pain; all except Romania and Bulgaria have for chronic cancer pain. Only Hungary has guidelines in place across all categories

37. National cancer control policy Key points 9/12 countries have a national cancer control policy, of which 4 include palliative care

38. National AIDS policy Key points 8/12 countries have a national AIDS policy, of which 3 include palliative care

39. Reimbursement Key points The health care system pays for home based palliative care in 4/12 countries; inpatient care in 5/12 countries

40. Legislation Key points 4/12 countries – Georgia, Hungary, Poland, Slovakia - have the necessary legislation for palliative care to be delivered in all four settings

41. Needs assessment Key points 6/12 countries have undertaken a palliative care needs assessment

42. Barriers to palliative care • Most frequently mentioned • -insufficient funding • -low social and professional awareness of palliative care • -poor pain control • -the lack of trained staff • -the absence of legislation.

43. Opportunities for palliative care Most frequently mentioned -the development of education and training programs -the support of ministers and a movement towards legislation -the development of national standards -the increasing number of palliative care services, professionals and volunteers -better pain relief and opioid availability .

44. Conclusions -A variable pattern of provision and progress (sparse provision for dying children) -much developmental work being undertaken -acute awareness of both the barriers and opportunities for palliative care development

45. Conclusions Significant developments Mongolian Palliative Care Society established in 1999 and organized basic education on palliative care for doctors, nurses, teachers of the Medical University and Colleges, translated and published main WHO guides on palliative care, wrote and published handbooks for basic and advanced palliative care education, organized Leadership Conferences on Palliative care, distributed materials to the parlament members, ministry of health, advocacy by TV and radio by financial support of Soros Foundation. Now all Medical Universities and Colleges have education program and curriculum on palliative care. Palliative Care Department was established in 2000 by financial support of Soros Foundation. Two home hospices established in 2002,2003 in Ulaanbaatar and Zuunharaa by activities of palliative care association members.