PACED coordinators Ksenia Pominova and Felix Pinto Bakeriso visited the Firefly World children's hospice in Georgia a few months ago. As part of the international PACED project (support for palliative care education in the Caucasus, Central Asia, Eastern Europe, and the Baltic countries), one of our tasks is to get acquainted with leaders in the field of palliative care and support them. We observed the hospice's operations, talked to staff, and had a conversation with Irakli Vetsko, the hospice's director.
Irakli Vetsko is the Executive Director of the first children's hospice in Tbilisi, Georgia – Hospice Firefly World. He is an entrepreneur and a professional in international development with experience in the Caucasus, Cambodia, the Dominican Republic, and the USA. His expertise includes organizational development, finance, administration, internal control systems of organizations, conflict resolution, peacebuilding, and education.
Irakli: Hello, Ksenia. Thank you for coming to our hospice again, and thanks for this opportunity. My experience in the palliative field started with Firefly World. I met Nina Kiknadze (founder of Firefly World Hospice) when we studied for our master's degree together many years ago. We became friends and often discussed possibly working together in this field. It happened that I wasn't geographically in Georgia until last year. I worked more remotely, focusing on fundraising, organizational matters, volunteering, and doing what could be done from a distance. Then, when I settled in Georgia last year, I officially started working at the hospice in January.
Ksenia: How often do you come here now?
Ksenia: Every day?!!
Irakli: Yes, that's right. There's work that requires a full-time commitment. I also engage in other activities, but during this period, I spend the majority of my time at the hospice.
Ksenia: So, it has become the main focus of your life now?
Irakli: Yes, it turned out that way. It wasn't planned like this; I intended to work at the hospice and also pursue other things, but at the moment, I spend five days a week at the hospice.
Ksenia: You mentioned studying together with Nina. What program was that?
Irakli: It was a public administration program unrelated to palliative care. But in my line of work, it certainly helps. I'm not a doctor; I'm an administrative worker. I've been trying to gather more information in this field in recent years. My job involves developing various aspects of Firefly World, including finding funding so that we can operate. Our services are free for our patients; we don't have a structured program that provides regular government or non-governmental funding. So, fundraising is something we constantly have to do.
Ksenia: You communicate well; I know you have many private donors.
Irakli: Yes, our main donors are private individuals or companies. We are constantly in communication. The majority are Georgian companies, with a small percentage of international donors who assist us, but they also operate locally. They know us because we work here in Tbilisi, not because we've entered some international orbit and received significant funding from there. Unfortunately, not yet.
Ksenia: Your hospice has tremendous potential, and the way you organize your work is remarkable. You mentioned working with both private donors and organizations that donate money. What other resources and infrastructure do you have to provide palliative care?
Irakli: We are privileged because we own this fantastic building. It was built in 2017 entirely through mass donations. Companies bought and gifted the hospice the land. We also secured funds from the Presidential Fund during Margvelashvili's presidency. The Soros Foundation also provided financial assistance, as did private individuals. We managed to build the building where we are currently located and working.
In addition to technical resources, we have significant human resources. We organized training for nurses, sending them to various European countries for particular training in palliative care, qualifying them. Unfortunately, at that time in Georgia, there was no real experience in this field, and we had to gain that experience somewhere. Not only medical personnel went for these trainings but also architects who planned the building. They went and visited many hospices worldwide to understand the specifics. As you can understand, the building has many peculiarities; we needed to plan the entrance, elevator shaft, places where children bathe, and so on. We were very fortunate to have the opportunity to send people who then built the building correctly. This house is the hospice's property. And everything you see in this house is as well. Many companies also helped with equipment: beds, chairs, wheelchairs – all were donated to us for free.
Ksenia: Irakli, you mentioned sending people for training in Europe. The first time we met, you talked about wanting your hospice to function as a hospice and as an educational centre for palliative care specialists. Tell us more about this idea.
The idea can develop in two directions: first – sharing experience and knowledge, and second – if we manage to create a real training centre, it will help the hospice generate additional financial resources.
Another equally important point: our hospice is for children, so parents always live here. Parents often lack the skills to care for their children in this situation, and we try to teach them. Children stay with us for some time, and when their condition stabilizes, the family often desires to have the children return home. But for us to help them at home, our medical staff must prepare parents for various procedures – how to properly care for children, how to bathe them, and so on.
These can be both simple manipulations and massages, for example. We have a highly professional rehabilitation specialist, Luka (Luka Mgeladze – hospice rehabilitation specialist, physiotherapist), who can teach the simplest things. Professional services are costly. If we pass on knowledge and skills to parents, firstly, we save them money because they won't have to hire personnel, and secondly, in the hospice, we can serve many more children.
We don't need enormous resources for this: we have our own building, and we know. We only need administrative decisions, paperwork, and approvals to invite other specialists and facilitate exchanges. Getting acquainted with the "PACED" foundation is also an excellent opportunity for us to connect with other professionals; thank you for that.
Ksenia: Irakli, tell us about specialists from different countries who want to visit to see how your hospice operates. I know you recently had a request from Armenia, for example.
Irakli: Yes, visitors from Armenia have already come to us. Usually, they spend several days here and observe the work in progress. If permission, we can also showcase our work on-site; we have a home care service. You will have the opportunity to visit tomorrow. We are always happy to share such experiences when we have a temporary opportunity.
Ksenia: How do you work with the families of patients? You mentioned that you and your staff train families to care for their children. I can't even imagine how... It's a huge task, especially when parents are under stress. How else do you help parents cope with the situation they find themselves in? I know you have a psychologist at the hospice.
Irakli: I would start with the psychologist's work (Natalia Gogitashvili – hospice psychologist). She works not only with the children and our patients but also with the parents and siblings of the children because it's clear that this is a tremendous stress for the whole family. Situations vary greatly... It turns out that most of the time, she works specifically with family members.
In addition, we provide parents whose children stay in the hospice the opportunity to live close to their children by providing a bed. Recently, there was a situation where our patient's brother was living here. We allocated a room for him to live here and do his homework. There was such a request from the family. Usually, the mother of the child or the grandmother lives with us. All our staff, except the driver, the rehabilitation specialist, and myself, are female, so they are more comfortable having women – the mother or grandmother of the child – stay here.
When it's an "off-life" situation, there are no restrictions here; we allow all family members to be here. They have a kitchen to cook in and a separate shower. We prepare food for the children ourselves. We try our best to create conditions so people feel at home as much as possible...
Ksenia: It's possible here!
Felix: Irakli, tell us a story that has particularly touched your heart during your time working here.
Irakli: Every case stays in memory... because every case is very special. Once a family came, representatives of one of the ethnic minorities in Georgia brought their child. They didn't speak Georgian, Russian, or English. We couldn't find a common language literally for a long time. After a while, I realized the family didn't understand where they were. They came to us from another hospital, and they were directed correctly. After two hours of communication, I understood that they thought we would perform some procedure here, and the child would walk out of there on their own two legs and continue their life at home. It took a lot of time and help from a translator to explain all this. In my practice, this was the most challenging case. People who had a 100% hope for recovery had to be explained in another language what hospice means.
Felix: Here, the issue was a language barrier and whether people know what palliative care is. You must have encountered patients who needed to be aware of palliative care in your work.
Irakli: Yes, that's also a big task for me. If we go out on the street now, stop people, and ask, 8 out of 10 people will not know what hospice or palliative care is. At most, a hospice is a hospital.
Felix: Do your neighbours know, those who live near the hospice, what you do?
Irakli: Some do, and some don't.
Felix: How do they perceive it?
Irakli: You know, there's no feeling among them like, "Oh, you can't approach that building" – thankfully, we don't have that here. However, educating and enlightening our local community and telling them what hospice is is a big task for me. That's one. And secondly, many people don't know that we exist.
Ksenia: What would you dream of doing in Tbilisi or Georgia that could help you tell about your hospice and palliative care in general?
Irakli: Many different approaches can be chosen. I've been on television several times, talking about what we do. It's challenging afterwards to understand what the result is. How do you count those who understood? Like everyone else, we could conduct several campaigns related to the day of palliative care.
Ksenia: Palliative Care Day is coming up on October 14th. Irakli: Doing something on that day would be good. Appearing on television is possible to talk about it. What format would be the most effective?
When we first met, and you suggested making a presentation about our hospice, it turned out that we have different presentations, by directions, but no general presentation. We made it then; it may have been long, but it was comprehensive. Our chief physician also works in one of the large children's hospitals in Tbilisi, and many medical directions go through this hospital. The first step is to visit all the hospitals and present to the chief physicians. Remind them that we exist and ask them to refer patients to us. They don't need to explain palliative care; they must be reminded that we are here.
Ksenia: You can leave them some materials that they can show and share with parents.
Irakli: I would also run some simple TV campaigns to explain to people straightforwardly what hospice means. Give this information in small portions and break it down.
Recently, at a festival in Tbilisi, I met a girl who voices Pokémon. She works as the "voice of Pokémon," voicing Pikachu and 19 other Pokémon in English. It's a very familiar voice to people. I told her about the hospice, and she said she could say any phrase in that recognizable voice. I'm still thinking about what message she could tell us.
We have resources from creative people and an advertising company ready to collaborate with us. They need direction to gain experience advertising palliative care and discussing the hospice. And we need it to work not only for us but also abroad. It's not right to limit geographically. People's desire to help exists everywhere; we need to ignite and provoke that desire.
Felix: What if volunteers came to you and said, "We know how to do advertising, design brochures, or do something else?" – is Firefly World ready to welcome volunteers? Are you prepared to work with them?
Irakli: I am very open and ready to work with volunteers; I have experience working with them. Unfortunately, in Georgia, there is no volunteering institute yet. People still look at volunteering as an opportunity to get some benefit from the activity rather than from a position of giving something. Recently, I had the experience of working with 500 volunteers at the World Ski Championship; I supervised all the volunteers who served at the championship. (Irakli has a small school for skiing for children).
Indeed, you can recruit excellent guys, but how do you keep them afterward and motivate them? It's difficult for young people to be here in the hospice. Emotionally challenging. And for adults, too. We must create a volunteering institute and explain what it is. We need to explain why one should volunteer and what it is for.
Ksenia: This fits well with the concept of your educational centre.
Irakli: We, as a hospice, are ready to work with volunteers, especially in the areas you are talking about – in training and education. Helping the nurses is more challenging; particular skills are needed there. Felix, you know about this very well and have extensive experience.
Felix: You are now talking about professional volunteers. But if, for example, a person comes to you and says, "I have two hours; I can do something useful for these two hours." Will you find something for them to do? They just came and wanted to do something helpful for the hospice. I don't know how your household is organized; I mean the simplest help, like washing windows, collecting rags for cleaning, or moving bags, they are lying over there... If a person comes from the street, there is undoubtedly work in your big beautiful house that you can give to them. You have a garden.
Irakli: Yes, you noticed. Yes, we have a garden. For some reason, I can't care for plants; they die at my place. I love them, but for some reason, they don't grow at my home. Of course, we can find various work for volunteers. We have many directions. For example, did you see the wheelchairs placed there? I asked Manana (Manana Kometiani - Chief Nurse) to distribute which wheelchairs we don't need, what we can give to other centres if they need them, and which wheelchairs are broken and need repair. She has arranged it all now, put stickers of different colours – what to throw away, what to give, what to repair. This is an excellent job for a volunteer who likes to take pictures and can then post it all on "MyMarket.ge" (an online service in Georgia for posting ads for selling goods) and get a few coins there. The hospice would gladly direct them for some needs. Yes, I think we can find someone for such specific work.
Felix: I saw up there – you have a hospice resident - a cat! Does he live here all the time?
Irakli: This is Tsutsal! He lives in the hospice all the time and very rarely goes outside. He was afraid of me; he would jump away and run away immediately. But now he seems to be used to it. Rodami (Rodami Gogohia - hospice coordinator) is a big cat lover. She has several at home. We feed the cat; he is very domestic. If he goes outside, Rodami has a mini-heart attack; she waits until the cat returns.
Irakli: To date, we focus more on training relatives, but now we are starting to work towards the development of palliative care in general. Despite owning the building, it is still costly for us. We pay utilities at a commercial rate. One company helps us pay them for now, but we must find out. They pay today or tomorrow - it needs to be clarified. Our rate is commercial.
Another point: today's traffic jams in Tbilisi make it impossible to travel from one address to another. We only have one car that can go out to homes. If these patients live near the airport and then here nearby, it's a long distance. We can serve a maximum of two addresses. Therefore, if our hospice has representative centres in the so-called "district polyclinics," it will be easier. Today, they are no longer state-owned, but they exist.
I am now working in this direction to negotiate with the owners of these clinics. They are represented not only in Tbilisi but throughout the country. In cooperation with them, we can have our nurse in each district; she can serve one district at home. The employee will be ours; the building will belong to the clinic. Such an approach will allow us to reach more people per day.
Ksenia: You can attach employees and train them in your training centre; everything fits in at your centre.
Irakli: Yes, that's true, but let it still be a centre with some satellites so that with minimal financial resources, we can serve a maximum number of people. The path is long but possible. 5-10 years ago, it would have been much more difficult until "corporate social responsibility" emerged. It is part of the philosophy of the European Union, and since we are aiming there, Georgian companies should do it. Many do it sincerely, some just because they have to. But both of these suit us. We plan to launch a pilot program in this area quickly and see what the result will be.
Ksenia: Do you and your team have anything that particularly supports you in your work and life? After all, you're dealing with a challenging job... Perhaps some rituals?
We strive to create the most comfortable situation for our staff, professionally and emotionally: organizing trips and vacations, and various companies assist us.
We recently had a staff meeting, and I mentioned that we need to create a program to support our employees to strengthen this even more so that people can take a break, relax, and distract themselves. It helps a lot.
Since working at Firefly World, I have often heard such a comment from my acquaintances and friends: "What a difficult job!" The same goes for fundraising: "Oh, how is it possible to do such work?" That's a very wrong comment and a very wrong perception. This work is necessary. This work must be done. It's part of our life. It's part of the world we all live in. Taking the ostrich position is useless. If we hide our heads, this part of life won't disappear. A person who desires to work here gets some positive energy because they understand that we, in the hospice, can help someone. If you look at it from this perspective, it's the most vital motivation - people know that they can invest their resources in a good cause.
Here you can find more information about the Firefly World children's hospice in Georgia.
If you want to contact Irakli Vetsko please email to email@example.com