Palliative care in Europe

After the opening of the Iron Curtain, many Central Eastern European countries transformed slowly, and often painfully, into a social health insurance system and have tried - on the advice of the World Bank – to strengthen primary care, to reduce the many hospital beds and to privatise health care delivery. At the same time they cut back taxbased costs in health care. These changes - or at least attempts - in countries such as Bulgaria, Hungary, Poland, Romania and Slovakia brought a lot of uncertainty, especially for old people. In addition, old habits remained (payment under the table, priority treatment through connections) as well as old traditions such as family care (Tambor, 2013).

Bulgaria, Poland and Romania have the lowest health care spending as a percentage of the gross national product (<7%) in Europe. There is a shortage of doctors and nurses (who, once educated, prefer to work abroad). In Bulgaria and Romania, the number of old people is growing fastest, whereas the share of young people decreases (Ghinescu 2014).

The health care system is malfunctioning in many Central Eastern European countries and particularly frail older people and those with a chronic illness, are its victims. The national health insurance only reimburses a limited number of medications and laboratory results. If patients need more, they need to supply these themselves. There is hardly any home care or respite care and palliative care is piecemeal, often made possible by support from foreign charities. It is up to the family to find a solution to the many problems that arise when someone needs long-term care.

The health status of the older generation in Central Eastern European countries is poor compared to that of Western European countries. Research among older people in Croatia, Poland, Romania, and the Netherlands showed that those who live at home in the first three countries have more difficulties in performing daily activities than the Dutch who live at home. Besides, the subjective and psychological health of the older generation in these three countries is worse than in the Netherlands and the number of self-reported chronic conditions were more frequent (Ghinescu 2014).

In Romania, for example, frailty of older people who live at home is significantly higher than in the Netherlands: an average frailty score of 5.5 and 3.4 respectively, as measured by the Groningen Frailty Indicator. A score of 4 or more is considered frail. The average score of frailty among older Romanians who live independently comes close to Dutch older people who live in a care home or nursing home (5.5 respectively 6.0; Olăroiu 2014). This is not surprising because there are only a few care homes and nursing homes in Romania, so frail older Romanians do not have much choice. Caring for ill and dependent persons is a family duty.

At the beginning of this century palliative care has been developed in Central Eastern Europe with funding from Western European countries, often through charity funds and non-profit institutions. Projects were funded to teach doctors and nurses competencies in palliative care. Many doctors, particularly general practitioners, acknowledged that their knowledge and skills concerning palliative care were inadequate. Moreover, with the help of the European Department of the World Health Organization, legislation was adapted in order to provide better access to resources for pain control in terminally ill patients.

Foreign grants also ensured that palliative care could actually be delivered, in general on a small scale, for example in a department of a hospital. In the last ten years, this development has continued, but there are still large differences between European countries, as is shown by the Global Atlas of Palliative Care (Connor, 2014; see Table 1).

Most palliative care services are available in Northwest Europe. The number of facilities per 1 million inhabitants amounts to approximately 15. Countries have different models of palliative care. In West-European countries various types of facilities are used. In Central-Eastern European countries, there is often either institutional care or home care. This partly depends on the foundations that helped set up palliative care, and partly on the presence of a well-organized primary care. In Central-Eastern European countries palliative care has (slowly) been developed over the last decade, with sometimes spectacular results such as in Poland. There is a clear correlation between palliative care provisions and the socio-economic development of a country. This is true in Europe as well as worldwide.

In Western European countries, palliative care is part of the medical curriculum. In Central Eastern Europe, it is not. However, there are ‘elective’ courses in some education programmes and there are training programmes for doctors and nurses – following their professional education - to gain competencies in palliative care. In Poland and Slovakia, palliative medicine is a sub specialisation.

The European Association for Palliative Care (EAPC) has developed a benchmark, the EAPC Index with a maximum score of 100, in order to compare palliative care between European countries. Given the above, it may be expected that there are clear differences within Europe. Western European countries score highest on the EAPC index. Sweden and the Netherlands, for instance, score 84 and 81 points respectively, Poland 77 points, and Hungary and Romania 44 and 40 points respectively. Romania comes in 22th place in Europe.

Another notable difference between Western and Central-Eastern European countries is the role of volunteers in palliative care. In Western Europe, volunteers play a major role in shaping palliative care and they are selected, trained and coached. In Central-Eastern European countries volunteers play no role in palliative care. Attempts to set up volunteer networks usually fail. It is up to the family to take care of the terminally ill.

Palliative care is slowly developing in most of the European countries that were formerly behind the Iron Curtain, but it is not (yet) part of the regular health (care) policy. The resolution of the Council of Europe remains without response in many of these countries. Because structural solutions fail to appear, the supply of palliative care is insufficient and the most vulnerable people in society, including many elderly people, suffer unnecessary. Major barriers are a lack of political support, the absence of training programmes in the regular professional training of doctors, nurses and social workers, limited reimbursement for drugs and inadequate funding for palliative care provisions.