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Establishment and development of palliative care in Ukraine

A glimpse of the health situation in Ukraine today

The population of Ukraine is about 47,000,000. Kyiv, with its 4,000,000 inhabitants, is a powerful pole of attraction for the population of the surrounding countryside, who flock into the city in search of work. The weakening of the Ukrainian social fabric – broken families, large numbers of street children (about 200,000 in the country as a whole), and the loss of bearings following the collapse of the Soviet régime – is particularly visible in Kiev. Ukrainians are trapped in ambivalent feelings, where nostalgia for the stability of the Soviet regime conflicts with dislike for the so-called “Soviet” mentality that has left its mark on officialdom, hospitals and medical practitioners. Omnipresent advertising has replaced the propaganda of the past: posters and video screens in public transport and in the street show a lifestyle and a standard of living that is inaccessible to the average Ukrainian. The official language is Ukrainian, but both in private and in official meetings, Russian is just as likely to be used.

The health situation is catastrophic: at present the country is in the grip of a tuberculosis epidemic, and the AIDS epidemic is one of the worst in Europe. A major programme to help drug addicts is under way, implemented by the French Red Cross. According to the WHO, the volume of internet purchases of counterfeit pharmaceuticals in Ukraine is considerable. Public advertising of pharmaceuticals is widespread. Statistics are scarce, and what is available is unreliable. Public health institutions lack adequate budgets for the financing of internal documentation, let alone information campaigns to target the public. In fact, most public health information is published by charities or NGOs.

In Ukraine, 98% of hospitals are public institutions. The health service collapsed along with the Soviet regime. There are about 100 public hospitals in Kiev. The maximum stay tends to be two weeks. Hospitals do not try to keep patients in – on the contrary, they do their best to get rid of them according to a Professor of the medical academy who claims not to know where people die: at home? somewhere else? One of the preoccupations of the NGO All-Ukrainian Council for Patients’ Rights and Security is the control of nosocomial (hospital acquired) infection. During my stay, it was announced on television that there had been no hospital deaths for five years. This was apparently part of an effort by the authorities to allay people's fear of going into hospital. One of the doctors in charge of implementing palliative care remarked: “We are not able to give our patients the means to survive; the least we could do is to give them decent conditions for dying.”

There are approximately 20 palliative care insitutions and 422 palliative care beds in Ukraine. A pilot project is under way in Kharkiv. There is no adequate access to morphine and it is available just in one form – injections. Indeed the collapse of the Soviet régime has led to a legal vacuum in health matters, especially in the field of palliative care. Hospice staff have not yet acquired the palliative care mind-set, or rather philosophy. Although some palliative care professionals have been trained abroad, hospices are still just places to die. According to one Orthodox theologian patients are still subject to a Soviet approach to medical practice, where they are regarded as passive rather than active. This is one of the major issues for the NGO (All-Ukrainian Council for Patients’ Rights and Security) which is seeking to establish an approach to palliative care and a hospice philosophy where the patient is an active partner.

The Pan-Ukrainian Council for patient rights and safety

The Pan-Ukrainian Council for patient rights and safety is an NGO with two main objectives: to improve the rights and safety of patients in Ukraine and to develop and establish a palliative care programme. The Council would like to reform the public health service, introduce a comprehensive view of public health, and persuade the authorities and legislators to modernise the relevant legislation. Under a Ministerial Order of 6 July 2006, the Council is officially responsible for establishing palliative care.

The status of the Churches

The Ukrainian constitution clearly stipulates the separation of Church and State. It is not always easy to obtain authorisations for the Churches' work. Because of the administrative problems posed by ecumenical projects, each Church pursues its own deaconry programme. Relationships between State and Church are of judicial order. Political instability does not make the work of deaconry bodies any easier. It is difficult to obtain authorisation for projects put forward by Church foundations. (A distinction is made that is possibly comparable to that made in France between associations governed by the 1905 Act on the one hand and the 1901 Act on the other). Churches can collaborate on logistics and financial matters. For example, the deaconry of the Orthodox Church has the legal status of Charity Foundation and therefore is considered non ecumenical. This status gives it some margin for manoeuvre and in reality it is an inter-Church programme. It is important to remember that the Churches have been growing for only about fifteen years. There is some competition, but also attempts at cooperation. But the term “ecumenical” is shunned, as its connotations are too theological, both for the authorities and for the Church representatives.

The role of the hospital chaplain in Ukraine

The role of chaplain in Ukrainian hospitals is very traditional, and may even be a mere formality. Frequently, a parish and a chapel will be associated with a public hospital. The chaplain is usually appointed as a function of affinities between the priest and the hospital director, regardless of denomination. Chaplains are unpaid. There are no legal provisions governing patients' rights to spiritual or religious support.

The Ukrainian doctors who are members of the NGO (Pan-Ukrainian Council for patients’ rights and safety) have quite a different vision. They expect a chaplain to be trained, capable of working in an interdisciplinary situation and attentive to respect for patients' rights.

Conclusions

One of the present aims of the NGO (Pan-Ukrainian Council for patient rights and safety) is to elaborate guidelines and hospital documents for palliative care that could then be applied to other areas of hospital practice. They are also interested in setting up training programs for doctors and other hospital professionals as well as for hospital chaplains.

We are hoping for a French – Polish –Ukrainian cooperation in these different areas.


Anne Miller-Lauprete
22 August 2007