Nina Kiknadze of the Open Society Georgia Foundation (OSGF) writes about the journey that has led to the building of a new children’s hospice which will be opened in Tbilisi as a joint project between OSGF, the medical corporation EVEX and the president’s reserve fund.
“Gaining knowledge about palliative care has made me … see that not having dresses and shoes is not a tragedy, but a real tragedy is when your child is terminally-ill with an incurable illness and there is nothing you can do about it – you can’t even ease the pain in the 21st century!”
A few years ago I became acquainted with the concept of palliative care. This happened when I started working at Open Society Georgia Foundation (OSGF). At that time, I had not had a clue what ‘palliative care’ meant, moreover, that such service even existed for terminally-ill patients.
Later on I learned from the materials published by the Foundation that ‘palliative care’ is care provided by specially-trained people, including family members, to improve quality of life of patients with serious illnesses. I became familiar with the practice after I started visiting Transfiguration Convent Mercy Center Hospice, which is located in Tbilisi, the capital city of Georgia.
There I met a girl who led a completely different life than me and my friends. I observed how unselfishly she took care of patients to ensure they did not suffer from pain or unpleasant symptoms like nausea, vomiting and severe bed sores. Even though palliative care cannot substantially prolong life, it can significantly change a patient’s condition. I was surprised to see how warmly she treated patients; how she explained advantages of hospice care to a patient’s family members, not to mention the psychological support she provided.
In short, after I’d had a chance to visit many hospices worldwide and had an opportunity to study the principles of palliative care, I understood that Transfiguration Hospice that I first visited in 2007 was in full compliance with all international standards. This made me even more proud to work at OSGF that had contributed much to the establishment and advancement of palliative care in Georgia.
Palliative care in Georgia
The introduction of palliative care to Georgia was first supported by the Open Society Foundations in 1999. At present, there are two adult hospices in Georgia, the Transfiguration Convent Mercy Center Hospice with 7 beds for women and the Department of Palliative Care at the Universal Medical Center with 18 beds. In addition about 2000 patients receive home care annually through the home care service, established by OSGF.
Through the support of the OSF an NGO, Children’s Hospice homecare services, was established for children between 0 – 18 years, but at present an in-patient children’s hospice does not exist in Georgia.
Paediatric palliative care – a difficult topic
When I speak about the need of establishing a children’s hospice people interrupt me saying ‘it’s a harsh topic, I can’t stand it…”, but I don’t quit and continue talking about how calmly children approach the end of their lives in hospices; how the ‘last will foundation’ works; how those children suffer whose physical and spiritual pain cannot be relieved; their last wills, where they write how it feels to hear the noise of the high heels that the nurse is wearing when something really hurts … It is definitely difficult to face the reality and identify solutions for the approximately 840 children in need of paediatric palliative care annually to receive adequate services.
“Mappa Mondo”, “Shooting Star Chase”, “Beyond the Rainbow”, “House of Hope” – these are the names of hospices in different countries, the very same hospices where 0-18 year-old children with life-limiting illnesses can go for respite and end-of-life care. People often mistakenly believe that a hospice is like a hospital. However, the basic principle of the hospice is not to resemble a hospital but rather to look like a palace for princes and princesses. For example, in one of the 350 sqm hospices (supported by businesses together with the parents of deceased children) wards are arranged according to the child patient’s wishes. Through the day the ward can transform from SpongeBob’s house to Superman’s fortress. Moreover, Johnny Depp, dressed up as a clown, often visits children’s hospices and entertains patients. Julia Roberts, Bono, Bruce Willis, Sara Gilbert, George Clooney and Paul Newman and many other celebrities are patrons for a number of different hospices.
Rome Conference on Paediatric Palliative Care – November 2014
In my favourite city the weather is fantastic, it is sunny, cheerful and fragrant but this is no comfort to me. Soon I will have to listen to different stories about children’s palliative care. I think gaining knowledge about palliative care, together with other factors, has changed my values for the better, made me more passionate and made me see that not having dresses and shoes is not a tragedy, but a real tragedy is when your child is terminally-ill with an incurable illness and there is nothing you can do about it – you can’t even ease the pain in the 21st century!
So many things could be done to support people with serious illnesses but unfortunately, in Georgia, people concentrate more on opening restaurants or shops. Donor organisations also restrain from financing service projects.
We plan to establish a Children’s Hospice in Georgia by the end of 2016. From 2013 the OSGF put special emphasis on analysing the barriers to the provision of effective paediatric palliative care and identifying potential solutions. The Foundation prepared a situational analysis and determined that about 839 children need palliative care in Georgia. Based on these findings, the OSGF together with the International Palliative Care Initiative Grants (IPCI) started developing and promoting the broad availability of paediatric palliative care services in Georgia.
Approach to the business sector
After two years of unsuccessful negotiation with state institutions, their vague position motivated us to begin cooperating with the business sector. Research findings, an action plan elaborated with the support of the Foundation and trained personnel helped create a solid background and eased the communication process with the business sector. In January 2015 the Medical Corporation “EVEX” (a spinoff of Commercial Bank) renovated an office for domiciliary care and handed it over to the Children’s Hospice. A team of ad hoc trained nurses and doctors received the first patient on March 16, 2015.
As well as home care, the Foundation laid the groundwork for setting up the first Children’s Hospice in Georgia, planned to provide 24/7 in-patient care.
As a result of negotiations with potential donors the medical corporation “EVEX”, its partner medical corporation expressed the desire to contribute to the construction of buildings for the Hospice. In April 2015 “EVEX” purchased the land in one of the most wonderful and ecologically attractive areas of the capital Tbilisi, Georgia.
Soon after hearing about the hospice development initiative the Administration President of Georgia expressed the desire to become involved the process, promising to pledge funds for the construction of the hospice. With “EVEX” and the president’s administration involvement, OSGF succeeded in raising the remaining funds from individuals employed in or managing big business.
On 29 May 2015, OSGF, Medical Corporation “EVEX” and the NGO “Children’s Hospice” signed a memorandum to start building the Children’s Hospice in Georgia. Our sincere hope is that the project will manage to gain more donors in order to build the kind of children’s hospice that every child would dream of visiting.
An article on the opening on Georgia’s first children’s hospice recently appeared in Democracy & Freedom Watch which you can access at http://dfwatch.net/new-childrens-hospice-to-be-opened-in-tbilisi-36054