Creating equal opportunities for a better life and welfare of the members of vulnerable social groups is a precondition of modern society. In 2007, the United Nations Assembly declared 20 February the World Day of Social Justice, as a reminder of solidarity with and responsibility towards those who need support from a wider community, such as people who need palliative care. We talked to Vera Madžgalj, the CEO of BELhospice, about the position of BELhospice in the social and health care systems. Some of the topics we covered were the types of social services available in Serbia within palliative care, the challenges for professionals and ways of supporting the families of palliative care patients.
What is palliative care?
Palliative care is an approach that improves the quality of life of patients and their families facing an untreatable illness, by way of prevention and relief of suffering through early identification and precise assessment and treatment of pain and other issues – physical, psychosocial and spiritual. Palliative care starts at diagnosis but it does not end when the person dies. It continues by helping the family cope with the loss.
What is the current situation concerning palliative care in Serbia?
In Serbia, palliative care is increasingly recognised as a growing need. There has been a lot of progress in the past few years but we still cannot say that it is accessible to all citizens or that there is a systemic and organised continuity of care. For palliative care to make headway and become sustainable, cooperation at all levels is needed: cooperation between health and social care systems and the education system, cooperation at the republic, provincial and local levels, and cooperation between civil society organisations, which need strengthening, and public institutions. In our society, some categories of the population are still not covered, such as children and various marginalised groups.
What services are available in Serbia?
Healthcare and social care systems provide some services. However, they do not address the needs of the patients or their families and depend on institutional and community capacity. Services are not standardised nor aligned with international practices and they do not take into consideration the basic principles of palliative care. People often fail to differentiate between palliative care and palliative medicine, concentrating on the physical symptoms of illness and neglecting the social, practical, emotional and spiritual aspects.
What kinds of support do people battling a serious illness need?
Many patients need good control of symptoms (pain, difficulty breathing, sickness, etc.), which is provided by a medical team. All patients need psychosocial support in their daily function and exercise of various rights. They need assistance to resolve family communication and relationship issues, psychological support to get through various emotional states, and spiritual support. Yet the most important kind of support is establishing good, honest and open communication and a trusting relationship. This is a key task of palliative care professionals.
What kinds of support do the patients’ families need?
Family members, as informal caregivers, are often a neglected category in our society. They too need support, as in the majority of cases patients want to be cared for at home. Informing, educating and preparing family members for losing their loved one is a key task of a multidisciplinary team. Services connected to practical support are also very important, such as support with care and the provision of medical aids. Substituting immediate caregiving family members to enable them to catch their breath is an essential aspect of the support. Finally, support during grieving after bereavement is also an integral part of palliative care.
Palliative care is mostly provided by NGOs. What type of support do they need and what are their greatest challenges?
In the countries with the best palliative care models, NGOs are the providers of hospice/palliative care. Although the social care system recognises the pluralism of service providers, further progress will be made when institutional cooperation and the financing of these services are regulated to ensure their coordination and continuity.
Our key challenges are a system that is not flexible enough to recognise innovative services and the slow acceptance of regulatory changes, rulebooks and protocols, and most often cooperation between public services and the wider community. Realising that these people are helpless, lonely and invisible to our entire system is heart-breaking. You are able and want to help, and it would make a big difference if the way you can do it is better regulated.
You have held training for social care professionals. What are your impressions and what are the impressions of those who attended them?
With the support of the GIZ project Social Services for Vulnerable Groups over the past four months, BELhospice has held six courses for social care professionals, service providers and local governments from 19 Serbian towns and municipalities. We are proud to have recognised the need in time and helped our social workers acquire basic skills and relevant knowledge. Some of them had never heard of the terms ‘hospice’ and ‘palliative care’ despite their close daily contact with the terminally ill. The majority of social workers recognise the importance of training because they need palliative care skills and knowledge in their daily work.
What aspects of your work are you most proud of, and what gives you greatest professional satisfaction?
I am most proud of the fact that we have succeeded in persuading the relevant ministries that BELhospice is an organisation whose good professional practices contribute to changes in palliative care in Serbia. My biggest professional satisfaction is the realisation that BELhopsice helps alleviate the suffering of the seriously ill and their families. I am especially proud when I witness the solidarity of our volunteers, who are helping us organise and work with our patients. Donors and the wider community keep supporting us, giving us the strength to continue doing what we do because there is a purpose in it. All this is priceless.
What advice would you give your younger self just starting in palliative care?
Professionalism and believing that you are doing the right thing is a winning combination. No matter how good your mission is, society is slow to change. But if you choose your steps wisely, you will achieve your goal. The steps must be moderate and well thought out.