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Alexander Wolf

Perspectives of civil society activities and volunteering in palliative and hospice care in Ukraine

Introduction The urgency of the development of modern humanistic approaches of social policy towards terminally ill is to be explained by the fact that this social problem affects almost every family in Ukraine. Within 90 years of the last and the first decade of the XXI century in Ukraine there is domination of extremely negative demographic trends, the most destructive is the unprecedented increase in mortality. According to our research, over the past five years every year in Ukraine die about 800 million people, almost 90 thousand of them from cancer. Thus, about 600 thousand terminally ill patients in the final period of life need professional palliative and hospice care. In addition, family members of palliative care patients also need professional palliative care, because when the family faces the problem of terminally ill person, especially in end-stage disease, it causes a decrease in quality of life for the whole family and causes severe psychological, social and economic disorders of operation. Thus, each year, in Ukraine there are about 2 million people in need of palliative and hospice care (Y.Gubski, V.Chaykovska, A.Tsarenko, 2010; A.Tsarenko, 2010, Y.Gubski, A.Tsarenko, H.A.Baranovska and al., 2011).

To provide care for them, in Ukraine there are around 30 facilities called “hospices”, which are mostly medical units, administrated under the Ministry of health and local health care authorities (O.Babijchuk, A.Wolf, I.Gavryshewa et al., 2013). The constant paradigm for Ukraine is the struggle between two trends – grass-roots initiatives (when some hospices have been established with the support and on initiative of civil society) and “from the top” initiatives (when hospices are being established by the Order, Resolution, or Recommendation of Minister of Health in the frameworks of the reform of health care. However, the headquarters’ Resolution or Order could not have the force as most of them cannot be realized (A.Wolf, 2012-2013).

This leads to the necessity of study of the civil society activities and volunteering in the process of development of palliative and hospice care in Ukraine.

It is worthy to mention that until now, the topics of medical, public administration, sociological, psychological issues of palliative and hospice care are rather underdeveloped on the scientific level: in Ukraine, since 1991 to 2014, there are just 4 PhD researches on medical issues of palliative and hospice care, 1 on public administration aspects of care to incurably ill, and 1 on making the state policy more human-oriented.

While exploring the role of volunteers in Ukraine, we developed and described, firstly in Ukraine, the phenomenon of «humanization of social policy». However, we have faced, firstly, the terminological uncertainty and different approaches to its definition in domestic and foreign studies, and, secondly, the lack of relevant Ukrainian political, sociological, psychological, and social work studies of social policy towards the terminally ill. After analyzing the existing international and national scientific publications on the subject we proposed our own definition of the phenomenon of the humanization of social policy: «the provision of person-centered policy, which is realized by the strengthening of democracy in society, the increasing role of civil society, and leads to the improvement of people's lives».

Short Methodology System analysis enabled us to determine the basic principles in the field of voluntary work for the terminally ill in Ukraine. Our research have been made in the form of semi-standarised observations and interviews with over 20 volunteers active 1) in innovative hospice and palliative care program on the basis of elderly social center in Kyiv and 2) in the support to severely ill children on the basis of central children hospital in Kyiv.

Results and Discussion We have established that one of the main principles of human-oriented policy is multidisciplinary and multisectoral approach when professionals with medical education, social workers, psychologists, representing various agencies and facilities as well as representatives of civil society unite together in order to eliminate and alleviate the comprehensive physical, psychological and spiritual suffering of the terminally ill and his family. Volunteers can play essential role in making the care to the dying more human-oriented and humanised. Accordingly to Rev. P.Krakowiak, (2014), volunteers are the “salt of hospice movement”. Volunteers can provide psychosocial support of dying and their relatives, in some cases preventing euthanasia (Y.Engels, 2014), providing bereavement support and emotional support to dying patients and their caregivers. Role of volunteers can be crucial in involvement of financial and material resources. The multi-channel financing in which the cooperation of public and state organizations is envisioned, is an important prerequisite for the development and care for the terminally ill. Being representatives of the community, volunteers can involve other peers to the support programs thus being the key factor of the process when hospice or other facility serves to community, answering all it needs.

The particular relevance to the theoretical understanding of ways to improve social policy in this field has the research into the possible interaction between state institutions and civil society in Ukraine and the role of civil society in the formation of such a policy. Volunteers can be regarded as active and essential part of civic society which pushes the civic society “from idea to action”.

Our research shows that the role of civil society in shaping social policy for the terminally ill in Ukraine and around the world is leading. This is evident from the fact that the first hospices in Ukraine have been established in first years of independence, and then it were civic society structures that pushed state to recognize palliative care. In 2006, Ministry of labour and social policy declared that hospice and palliative care is the domain of just health care. But in 2012-2013 after the 6-years advocacy work of civic society organizations it had established new type of social services – palliative care which is to be provided mostly at home.

One of the crucial points during this process was the advocacy voluntary campaign organized by the Association of palliative and hospice care for development of the first home hospice care facility (on the basis of social center) within the structure of Ministry of social policy. For that, the special series of cultural events, mostly charitable concerts in Kyiv with the title “Artists support hospices” have been organized by volunteers. The purpose of the campaign was to attract additional financial resources (charitable donations) for hospice and palliative care on the basis of social center in the Pechersk district. Materials of research suggest the following conclusions.

To organize an average charitable concert the group of artists (4-8 people), designers (2 persons), volunteers (3-7 people) spent about 100 hours. The preparation starts 2 months before the event. Maximum operating time was devoted to advertising the event. Professional designer produced posters in Ukrainian and English in the amount of around 20 pieces. They are going to be distributed among the four bookstores located in the central part of Kyiv. Work was carried to attract, select and train volunteers who were collecting donations during the event. The motivation of participants was "to help seriously ill people", "compassion for these people", "desire to participate in good event", "desire to help". Total number of visitors to the concert was about 130 people, and to the performances - about 420 people. At the same time, the amount of donations in the first case was 3.5 times more than the second. It can be explained by the fact that concerts have been attended by people of different ages, and performances mostly by young people. Other conclusions are that the age of action volunteers who contributed to charitable concerts varied from 23 to 61, they are mostly females. The final goal of the event (collecting donations for the hospice that works in Pechersk district) did not influence the sum of donations raised. In addition, despite the offer for observes to stay the palliative and hospice care volunteers in Kyiv, just one person out of 420, (in 2010-2014) agreed to. From this we can assume that the main motivation for the audience of the event was rather satisfying spiritual needs than support hospice movement. Desire to support hospice care program was the secondary need.

The special support had been provided through the NGO which supports former drug-addicted persons. Participation and voluntary support for these persons meant additional psychosocial rehabilitation. We should also mention that the greatest role in the decision-making about the volunteering for hospice charitable concert played the decision of the coordinator of the rehabilitation program so we can not mention the motivation of these volunteers.

All volunteers mentioned that they do need to undergo the special trainings, where they can raise their communication and administrative capacities. Anyhow, Association of palliative and hospice care could not manage to provide such a training for them.

Organization of fundraising programs have shown that volunteers are crucial point to support the innovative program. In 2010-2013 the program have been developed with the support of volunteers. They have helped to raise funds, attract public attention, and keep interest to the program. The list of institutions involved in assisting the terminally ill and their families, have been widened in 4 years. The program united local organization of the Red Cross (coordinates patronage nurses involved in the program), Association of palliative and hospice care (helps to find volunteers, attracts additional funds for the implementation of the project), the Synodal Department of Ukrainian Orthodox Church (coordinates providing spiritual care to palliative patients).

But the realization of the project in the 2010-2014 showed some difficulties associated with the voluntary service in the field of palliative and hospice care. As mentioned above, hospices, including these in Kiev, are “medicalized” institutions that do not have social workers and volunteers. This immediately reduced the possibility of experience exchange between the hospices and the new program, which started to operate on the basis of the social center.
The program showed the unwillingness of clients to accept volunteer assistance. Clients at home hospice programs are elderly (65 years and above) who are very wary of new people. Even the coordination of the social worker and the psychologist did not help to establish a regular home support . Thus, more than 10 volunteers from the local church community were not able to provide their services.

Other difficulty was connected to the fact that in 2012 the law about volunteering was passed in Ukraine. However, its statements, according to experts of the YMCA and other NGOs, suggests that it was adopted hastily, in order to strengthen state control over the NGO and volunteers which suspected to be “the foreign agents”. It requests a number of unrealistic provisions (eg, obtaining the status of the “volunteer” organization), but, on the other hand, does not provide the mechanism to monitor the implementation of this policy.

At the same time, Association of palliative and hospice care realizes the program of support for severely ill children who are in the central children hospital in Kyiv. It have shown that volunteers in children's hospitals in which they work in departments where are palliative patients (dialysis department, blood cancer, AIDS / HIV) are significantly more active. It should be noted that in Ukraine there is no children's hospice and palliative care for children. Although mortality in the aforementioned departments is very high, these units are not considered as palliative and have no special rights, responsibilities and privileges. Volunteers in these offices operate on such two areas: the organization of raising funds for medicines and other necessities and psychosocial support.

The realization of this program shows that because of the lack of strong motivation, training, and other forms of support for volunteers, more volunteers prefer to devote themselves rather to unregular activities such as charitable actions and fundraisers aiming to either support of elderly or children.

So this can be the solution for Ukraine, which has rather undeveloped civic society: creating of the possibilities to realize different actions which could be the sphere where volunteers can be active and trained, with less attention for volunteering at bed-side of severely ill person facing the challenge of incurable disease.        

In general, the implementation of the volunteer program in the 2010-2014 showed that the volunteers at the hospice are a sign of the openness of the institution. In Ukraine, hospices, as a product of the overall health system, remain to be closed, so there is no organized groups of volunteers, their coordinator, social worker, and supervisor. The most promising form of organization of the volunteer movement in palliative and hospice care in Ukraine is the action volunteering, helping to raise funds and draw attention to this issue.

References

1) Губський Ю., Царенко А., Шевчик А., Бабійчук О. Діяльність Інституту паліативної та хоспісної медицини МОЗ України у 2010 році щодо удосконалення нормативно-правового бази паліативної та хоспісної медицини в Україні / Ю.Губський, А.Царенко, А.Шевчик, О.Бабійчук // Медичне право, 2011. – №2. – с. 4-16.

2)  Звіт за результатами дослідження щодо дотримання прав тяжкохворих (невиліковних) громадян і членів їхніх родин в Україні / О. М. Бабійчук, О. О. Вольф, І. І. Гавришева, Н. В. Говда та ін. – К.: ВМУРОЛ «Україна», 2013. – 100 с.

3) Materials of the BMBF study week on volunteering in hospice and palliative care.

 

 



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