Ksenia: Irakli, thank you for agreeing to this interview. Can you tell us about your journey? How did you get into palliative care? Did you join Firefly World Hospice right away?

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, the founder of Firefly World, 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, organisational 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?

Irakli: I spend every day at the hospice 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 programme was that?

Irakli: It was a public administration programme 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 programme 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 organise your work is remarkable. You mentioned working with both private donors and organisations 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 organised 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 else. Not only medical personnel went for these training sessions but also architects who planned the building. They 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.

Ksenia: Irakli, you mentioned sending people for training in Europe. The first time we met, you talked about the possibility of your hospice functioning as a hospice and as an educational centre for palliative care specialists. Tell us more about this idea.
Irakli: This idea came to me the first days I joined this hospice.

Irakli: This idea came to me the first days I joined this hospice.

By resources, I mean experience and knowledge. I think, why not share this experience we have? There is a demand for this experience and expertise.
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 stabilises, the family often desires to return the children home. But in this case 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 difficult massages, for example. We have a highly professional rehabilitation specialist, Luka 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, we can serve many more children in the hospice.

Our chief physician and head nurse have incredible experience. This is currently concentrated in one place and needs to be spread. Creating a structure where this knowledge and skills can be transferred will make working much easier and more efficient.

We don't need enormous resources for this: we have our own building, and we have our knowledge. 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 and 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. With due permission, we can also showcase our work on-site; we have a home care service. You can participate in a visit tomorrow. We are always happy to share such experiences when we have an 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, her name is Natalia Gogitashvili. 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.

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, a mother of a child or a grandmother lives with us. All our staff, except the driver, the rehabilitation specialist, and myself, are female, so they are more comfortable having women — a mother or a grandmother of a child — stay 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 for people to feel at home, to the possible extent.
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 literally couldn't find a common language for a long time. After a while, I realised 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 here on their own and continue their life at home. It took a lot of time and help from a translator to explain them the situation. This was the most challenging case in my practice. People who had a 100% hope for recovery had to be explained in another language what hospice means.

Felix: Here, the issue was not only whether the people knew what palliative care was, but the language barrier as well. And you must have encountered patients who knew nothing of palliative care.

Irakli: Yes, that's also a big task for me. 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 just don't know we exist.

Ksenia: What would you dream of doing in Tbilisi or Georgia that could help you advocate for 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. What format could be the most effective?

When we first met, and you suggested making a presentation about our hospice, it turned out that we had different small presentations, but no general presentation. We made it then; it is long but 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 talk to chief physicians. Remind them that we exist and ask them to refer patients to us.

Ksenia: You can leave some materials for them to 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 is a voice actor, voicing Pikachu and 19 other Pokémons in English. It's a very familiar voice to the people. I told her about the hospice, and she said she could say any phrase in that recogniszable voice. I'm still thinking about what message she could tell.

Different creative people and one advertising company are ready to collaborate with us. They need instructions to gain experience advertising palliative care. And we need it to work not only for us but also abroad. It's not right to limit ourselves 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 such experience. Unfortunately, in Georgia, there is no volunteering system yet. People still look at volunteering as an opportunity to benefit from an activity rather than give and share. 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. I have a small skiing school for children.

It's difficult for young people to be here in the hospice. Emotionally challenging. And for adults, too. We must create the volunteering system, we must explain it to the people: why one should volunteer, how one can help another.

Ksenia: This fits well with your educational centre concept.

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 required. 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 in these two hours.’ Will you find something for them to do? I don't know how your household is organised; I mean the simplest help, like washing windows, collecting rags for cleaning, or moving bags, such things. If a person comes from the street, there is undoubtedly some work in your big beautiful house that you can delegate to them. You have a garden, for example.

Ksenia: Water the flowers!

Irakli: 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 kinds of work for volunteers. We have many things to do. For example, did you see the wheelchairs placed there? I asked Manana Kometiani, our Chief Nurse, to distribute which wheelchairs we don't need and can give to other centres, 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 can take pictures and sell some unnecessary equipment via the Internet, to gain us some coins. This is a specific work, and I think we could gladly delegate it.

Felix: I saw up there, you have a hospice resident, a cat! Does it 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 as I passed by. But now he seems to get used to me. Rodami Gogohia, the hospice coordinator, is a big cat lover. She has several at home. Tsutsal is a very domestic cat. Every time he goes for a walk outside, Rodami has a mini-heart attack; she waits until the cat returns.

Ksenia: Is your team more focused on training relatives or organiszing palliative hospitals and centres?

Irakli: For now, we focus more on training relatives, but 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 donor covers these payments for now, but it can end at any moment.
Another point: traffic jams in Tbilisi make it impossible to travel from one address to another.

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 planning to negotiate with 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 — our employees in their clinics. Such an approach will allow us to reach more people per day.

Ksenia: You can train employees in your training centre; everything fits with your idea.

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 it is possible. 5-10 years ago, before the idea of corporate social responsibility had emerged, it would have been much more difficult. It is a part of the European Union philosophy. 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 programme 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?

Irakli: Our nurses develop unique relationships with parents of the children. Many children are no longer with us, but our nurses continue to communicate with the parents. They even attend birthdays of the children they care for.

Some parents provide financial assistance, while others maintain the connection.
We strive to create the most comfortable conditions for our staff, professionally and emotionally: organiszing trips and vacations, and various donors assist us with that.
We recently had a staff meeting, where we discussed a programme to support our employees, so that people can take a break, relax, and distract. 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, such an impossible task!’ That's a very wrong perception.

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, help people. 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.