Anastasia Gulyavina, Chief Strategic Officer, PACED (Moderator)

PACED Foundation is a British organisation that promotes the improvement and accessibility of palliative care through education, training, and development of palliative care professionals in regions of interest. Currently, these regions include Central Asia, the Caucasus, Eastern Europe, and the Baltic States.
Almost a year ago, we launched a series of thematic webinars on the state of palliative care in various countries within our sphere of influence. It turned out that most specialists, speakers, and experts currently within our network are focused on paediatric palliative care. Therefore, as a summarising event, we decided to hold a roundtable discussion to address issues, challenges, and potential points of collaboration within the professional community that could contribute to the development of paediatric palliative care at a regional or national level. I am delighted that thirteen speakers from over six countries have joined this roundtable. Today, we have a special guest representing an entire community of paediatric palliative care specialists.
I am pleased to introduce our experts for today. Let’s start with our colleagues from Uzbekistan. Today with us are Rustam Norbaev, head of the children’s hospice "Taskin" and Nodir Rakhimov, director of the Samarkand Regional Interregional Hospice.
Our colleagues from Armenia, you can find our interview with them on our website, are Narine Movsesyan, an anesthesiologist, lecturer at the Yerevan State Medical University, palliative care and pain management specialist, and an international leader of the Palliative Care Leadership Development Initiative. Narine’s colleague from Armenia is Anush Sargsyan, a paediatric rehabilitation specialist and Head of the paediatric palliative care department at the Hematology Center named after Prof. Yeolyan.
Colleagues from Latvia are Anda Jansone, founder of paediatric palliative care in Latvia, chairperson of the board of the Children’s Palliative Care Society, head of the Psychosocial Rehabilitation and Pediatric Palliative Care Service, and an international expert with the ICPCN. Julia Cirule-Galuza, head of the Liepaja Children's Palliative Care Service at the Liepaja Regional Hospital.
Our colleagues from Belarus: Anna Gorchakova, director of the Charity Children’s Hospice, head of the palliative medicine course at BelMAPO, and Olga Skorbenko, chairperson of the board of the Public Association of Parents of Premature Babies "Rano".
Experts from Georgia: Irakli Vetsko, director of the children's hospice "Firefly World". You can read a separate interview with Irakli on our website. Nino Kiknadze, founder of the children’s hospice "Firefly World".
Finally, our colleagues from Kazakhstan are Yulia Streletskaya, an anesthesiologist-resuscitator and head of the Centre for Respiratory Support, Palliative Care and Rehabilitation of the Public Foundation "Өмірге сен", and Nurila Maltabarova, head of the department of paediatric anesthesiology, intensive care, and emergency care at Astana Medical University, chief freelance paediatric anesthesiologist-resuscitator, and coordinator of palliative medical care for the public health department of Astana.
Our special guest is Professor Julia Downing, Executive Director of the International Children’s Palliative Care Network.
We have four questions prepared for discussion today. Each country, each group of experts will be able to share their perspective on each question. We will start with a general question to ensure everyone is on the same page, at least concerning the region represented here today. Here is the first question.

Anastasia Gulyavina (Moderator)

What is the level of development of each of the 4 components of palliative care (medical, psychological, social, spiritual) in your country in relation to paediatric palliative care? Of course, any component may be in a more developed state or still developing in accordance with cultural characteristics or history of paediatric palliative care in a country.

Next, let's talk about psychological support. There is no field of psycho-oncology in Uzbekistan. We have one psychologist who studied in Moscow, but she struggles with the Uzbek language, and most of our population speaks Uzbek. Therefore, she mainly provides methodological support. Another psychologist studied general psychology in her master’s program, so this is not her primary field. Therefore, psychological support is almost non-existent here. It might have improved slightly over the past two years as we have been learning through experience, but it remains minimal.
Thirdly, there is social support. We recently established the Agency for Social Protection under the Presidential Administration. They are just starting to develop standards for providing palliative care to incurable patients. We have seen part of these standards and helped edit them, but they are not yet published. Social workers and the entire system do not yet provide adequate support. We hope that within a month, when these standards are published, we can start working with them.
Regarding spiritual support, most of our population are Muslims, so parents often request an imam or a mullah. But even for them, it's very challenging. They have not been trained for this. Yes, they know their field, but even for them, it’s shocking. Sometimes they cannot answer the questions children ask them. So, I believe they would also benefit from some training and preparation. Overall, palliative care in Uzbekistan is just starting to develop and gain attention, but it remains at a very basic level.
I also forgot to mention another issue related to medical care. We were supposed to receive morphine tablets today, but unfortunately, there was an issue at customs, so they will only arrive in ten days. Currently, we only have injectable morphine for both adults and children. Tramadol is also frequently used. We have now started the informational campaign on tramadol not being recommended for children. We hope to have fentanyl patches by December. After that, we plan to import and register other forms of pain relief.

Anda Jansone
Paediatric palliative care has existed in Latvia for 25 years, and our system is well-established. We have a palliative care system for both children and adults, provided by a multidisciplinary professional team consisting of doctors, nurses, chaplains, psychologists, and social workers. Currently, paediatric palliative care in our country is funded by the government.

Social support is more or less adequate. The problem with our social workers is that the conditions at the state and local government levels are continuously changing. What was guaranteed two months ago might not be guaranteed two months later. Social workers constantly have to actively work with all the families because the situation keeps changing.
I think spiritual support is our strong suit. Chaplains have gradually learned and found a way to connect with people's hearts. Initially, people were afraid of the word "chaplain" and the idea of spiritual care. Now, chaplains are perceived more as friends and helpers, guiding the entire family on their spiritual journey.
We still have much to strive for and improve, but we have already accomplished a lot.

Anda Jansone
I would like to add to what Julia said about our chaplains. Our advantage is that our chaplains are not limited to any single religion. They are interfaith workers who provide support regardless of the family's faith, even if they are atheists. Families accept them as spiritual support, and I think this is very important. We also have a project supporting people who have lost children. For up to two years after losing a child, families can receive spiritual support.

Julia Cirule-Galuza
It's also very important that chaplains can collaborate with a family and do many things that others might not have time for. Often, their contact with the family starts with physical assistance, and from there, a spiritual connection is formed.

Anastasia Gulyavina (Moderator)
Thank you very much, Julia and Anda. I have a quick question. Regarding what Rustam mentioned about the lack of preparation for spiritual care specialists, was there any specific training or education for your chaplains, or did their approach to working with families develop naturally over time? Additionally, do they involve any community or group in providing physical assistance to the family, as you mentioned they have this resource?

Anda Jansone
Our chaplains are trained based on American methodology. Currently, there is a chaplaincy course at Riga University for those who want to become chaplains in palliative or other medical care.

Julia Cirule-Galuza
Initially, it was difficult because when we first started, our chaplains had not yet undergone this training, and we had to manage on our own. So, when the course became available, it made things significantly easier. Regarding involving communities, yes, this is very important. Unfortunately, there is not always an active community available everywhere, so sometimes there's no one to involve.

Regarding the medical component in palliative care, especially paediatric palliative care, we are making progress, but we face significant issues. Primarily, these are related to the shortage of specialists trained specifically for paediatric palliative care.
Another challenge is the lack of necessary medications and medical equipment. This issue extends beyond just drugs to include essential items like furniture required for providing paediatric palliative care. Pain relief is a particular problem. The process of obtaining and administering pain relief, especially liquid morphine, is heavily restricted. Overall, these are problems that other countries represented here today might also encounter.
However, there are positive developments in the field of medical palliative care. We are currently trying to integrate palliative care into the medical system. We are organising training sessions and material bases for those currently working in palliative care. But as I mentioned, we are still at the beginning of this journey.
Regarding the psychological component and the support for children and their families, we face similar problems: a lack of personnel specifically trained in this field. For instance, we have a specialist in psychological support for palliative patients and their families, but this is a rare case. Other institutions face a significant shortage of professionals trained specifically for this field.
I must note that at least there is a recognition of the need to continue developing this field. We need to take more significant steps to work in this direction in the future. Just as in the medical aspect, we see support from international organisations, especially through various training sessions and seminars held locally. These are often initiated by various NGOs involved in educational, psychological, and other forms of support.
The social component presents a huge challenge, which I believe is common in other countries as well. This challenge is related to economic issues and the lack of financial resources, especially when people enter hospice care. For example, in our institution, we provide assistance completely free of charge. I think this is crucial for the continued development of palliative care in Georgia. Another point is that we have a social program for providing free wheelchairs. However, these need to be adjusted and customised, and again we face the problem of a shortage of personnel. We lack access to the materials needed to train people for this work.
There are improvements in the social aspect. We have developed a new program—a platform for home care assistance. Social workers can register on this platform, but it is still not fully functional. The payment for social workers is very low, and we see that there is no full access to multidisciplinary teams on this platform, which is crucial.
Regarding the spiritual component, we also face problems. There is a lack of recognition of the importance of spiritual support within the healthcare system as a whole. There are very few specialists, and people often wait a long time to access them. They work across various religions. It is necessary to incorporate spiritual support into the system. Most of this work is carried out by NGOs, but it is important to understand that stigmatisation of this topic is still quite prevalent in our society.
To summarise, the main challenges are the shortage of trained personnel, often linked to the fact that people leave the country in search of better-paying positions. There is also a lack of access to resources: medications, pain relief drugs, and special equipment. Finally, there is insufficient integration of palliative care within the overall healthcare system.

Regarding psychological support, there are psychologists in hospitals and medical centres, but they rarely focus on families with palliative children and almost never work with families after a child's death. There are also issues with language proficiency, as we lack psychologists fluent in Kazakh.
Spiritual support is even more challenging. Life-threatening illnesses always raise questions about the meaning of life and death, which is a complex aspect, especially in paediatric palliative care. We do not equate spirituality strictly with religiosity, but we do have prayer rooms for Orthodox Christians and Muslims in a palliative care department in Astana. Unfortunately, there are no organised spiritual communities, so this aspect of palliative care is underdeveloped in the country.
Non-governmental organisations bear many responsibilities, with most of the burden falling on them.

Nurila Maltabarova
I am the coordinator of paediatric palliative care in Astana. I partly disagree with Yulia regarding the medical aspect. Currently, we have a standard for organising palliative care, which is currently general for both adults and children. However, we have the Kazakhstan Pediatric Palliative Care Association, an NGO, which is advocating in the parliament for a separate standard for children because paediatric palliative care has its distinct features, differing from adult care. Adult care mainly deals with oncology, whereas paediatric palliative care includes children with orphan diseases, severe central nervous system disorders, and, of course, oncology.
We are actively working on creating a registry, which we have lacked for many years. Together with the Kazakhstan Pediatric Palliative Care Association, we are developing this registry, starting with Astana.
Regarding medical care, there have been instances where we provided intensive treatment because these children were and still are in intensive care units in many regions. When they are in intensive care, there is a misunderstanding from parents about why we are not treating them, and we are compelled to treat. Currently, we have initiated a project with the Kazakhstan Pediatric Palliative Care Association to research the pharmacoeconomic justification of the medications these children receive in intensive care as palliative patients and whether it would be more cost-effective for the state to open palliative care centres. Today, we have palliative care centres in Astana, Shymkent, and Karaganda – three cities.
Regarding social support, parents receive certain allowances, which provide some support. The Kazakhstan Halkyna Fund, in collaboration with the Kazakhstan Pediatric Palliative Care Association, is developing a list of equipment and supplies for palliative care centres. We are on the right path. We have made a significant turn towards addressing this issue, if not 360 degrees, then at least 180 degrees.

Listening to colleagues from Uzbekistan, I was surprised. In our case, it's the opposite. I come from oncology, but now, you know, 80% of our palliative care is non-oncological. Every child undergoes medical check-ups four times a year, with full integration. The remaining 20% related to oncology seems to have disappeared. The answer lies in the absence of oncologists in palliative care. No oncologists, no palliative care. Our palliative care is excellent, but only on paper.
Regarding social support, everything is free. A large amount of equipment, including ventilators and cough assist devices, is provided free of charge. It's available, though sometimes challenging to secure.
Psychological support is also abundant. Psychologists are as common as lawyers – they are everywhere. So, it seems everything is good in this regard.
Concerning spiritual support, we have only one Father Roman for all of Belarus. I know Anda well, and we tried to establish chaplain training based on the American or British system. But it won't work here, just as it wouldn't in a Muslim country. This is my personal opinion. People need a priest, preferably one who is visibly clergy.
Father Roman is very accommodating and works with people of all religions, including Muslims and Catholics. So, it seems everything is fine.
However, stepping down from this optimistic level, I'd like to address the issue of education. Who works in these offices and centres? This is the first question. The second question concerns integration. We claim to be highly integrated, but I can no longer distinguish between paediatric and palliative services; they have merged. For example, a child with a chronic condition like SMA receives more services than a child needing emergency care.
Regarding rehabilitation, we are also leading. Our rehabilitologists have completed training worldwide.
But I have grown to be criticall. I must mention that we do not have palliative care; we have palliative medicine. The Ministry of Health oversees everything. Social protection and education are separate, leading to a lack of a holistic approach, which is unlikely to change.
Finally, the human factor is crucial. Without specialists providing palliative care, we can't achieve anything, no matter how well we plan. Now, my colleague will talk about the human factor. She works in a public organisation. We are well-integrated, starting from birth. Olya will explain how it works.

Olga Skorbenko
I deal with a specific segment of population – parents and premature babies. Unfortunately, I must agree with Anna Georgievna. Our medical system is quite good. We effectively care for babies born at 23-24 weeks gestation. Our statistics align closely with the official statistics. But many issues arise with communication with parents and routing for services, especially for newborns who have never been at home and stay in intensive care for up to six months or more. How do we explain palliative status to families? There are many gaps in communication, leading to further consequences because parents often have limited choices and do not always understand what leaving a child in an orphanage means.
The farther a child is from a regional centre, the harder it is to get an oxygen concentrator. There are also issues with documentation, as newborns lack official papers. Parents cannot formalise disability status to receive social benefits, like disability pensions.
There are many questions, but we are trying. Our parents, if I may say so, are lucky because we work closely with the hospice, although it is not a state structure. We have issues with systematic communication with the state.
The staffing issue is critical. Much depends on the human factor – who communicates with the parents and who approaches the non-profit organisations.

Anush Sargsyan
I will be brief. Things are not very good. We have two centres. One is ours, named after Yeolyan, where I work, and it is only for oncology patients. In 2021, we got just five beds for palliative patients. This centre is well-organised in terms of medical, spiritual, and other aspects. We have Oramorph. No fentanyl doses for children, but we have adult doses in the country. Oramorph meets this need. We do not have a registry.
There is another centre in the Children's Hospital with three beds, which only covers the medical part. This is where children who became palliative after treatment stay, so they are not sent home. They live there until the end. The social, spiritual, and psychological aspects are absent.
We do not have a mobile service. Children receive nothing at home. If they are in Yerevan, the capital, I can visit them on my initiative, but if they are in the regions, there is nothing for them. Support allowances for care and nutritional support are insufficient. Sometimes non-governmental organisations buy what is needed.

Anastasia Gulyavina (Moderator)
Thank you very much, colleagues. Now I would like to ask a question to Julia.
There are very different spectrums and stages of development of paediatric palliative care in different countries. Some have had it for thirty years, others for twenty-five, and some are just seeing positive changes. In your opinion, observing the global development of paediatric palliative care in various countries, do you think there are any common trends and vectors? Can you perhaps reassure us that it has been this way everywhere?

I also noticed that many mentioned the lack of staff and personnel. Education and training of such specialists is insufficient. There are issues with general education for all social workers, doctors, and nurses. Many of them lack basic training in palliative care, and this is very important.
Another crucial aspect is integration. How can we integrate paediatric palliative care into the general healthcare system so that it becomes accessible to everyone? Many colleagues have already emphasised that in some countries, support is available at home, while in others, it's only available in hospitals. Several specialists mentioned that if you live in the capital, you can receive more support, whereas if you live in a rural area, significant problems arise.
You also touched upon the holistic nature of social-medical care and psychological support. Bringing all these aspects together is very challenging. We see the same picture in other countries worldwide. Often, when we look at the development of paediatric palliative care, there is a tendency to start with either medical or social support, and then other categories of support follow. This is normal.
There are two more important aspects I would like to highlight: access to medical drugs and standards. In some countries, there is access to opioid drugs in child-appropriate proportions, while in others, there is not. For example, morphine is available, but not in paediatric doses. Access to medical drugs remains a challenge for many countries. We hear this very often worldwide. At ICPCN, we work a lot on this issue.
Lastly, several colleagues mentioned working on standards and recently noticed updates in the global standards for paediatric palliative care. I think we can provide good support in this area. It is important to learn from the experience of those countries that have successfully integrated paediatric palliative care into their general healthcare system. Again, we have so much to learn from each other.

Anastasia Gulyavina (Moderator)
What are the fast growth areas in paediatric palliative care in your country, what can be improved tomorrow with a little effort (low-hanging fruits)? And what, on the contrary, is almost impossible at this stage of development? If we take the most difficult areas that are still virgin land, what do you see as the main barriers? What fundamentally prevents you from at least starting to move in this direction?

Anush Sargsyan
Firstly, there is insufficient funding. Secondly, there is no specialised paediatric palliative care specialty. Even those doctors who wish to become such specialists – cannot because there is nowhere to obtain this specialty.
This year, we are launching a mobile palliative care service because the government has allocated funding for it. We will see the pros and cons of this service and test it in the capital. Expanding this service to other regions will be challenging, but it is an area of rapid growth.
Another serious problem is the development of perinatal palliative care.

Narine Movsesyan
I would like to add that the Ministry of Health needs to realise the necessity of paediatric palliative care services. No matter how much we take on this burden and responsibility, they must be interested because the significant burden of unnecessary and unjustified treatments for these children should prompt our ministry to fund these services so they can be represented in the regions. But there is no awareness from their side. They are more focused on curative and preventive treatments. They do not recognize that this part of the population is suffering and that the medical system is overloaded. No matter how much we try to explain this to them, they do not understand.

Julia Cirule-Galuza
The second question is what would be easier to change. Like the rest of the world, our IT sector is developing. We really need a secure computer system that can maintain a registry of palliative patients. This would allow any specialist anywhere to enter a child’s ID-code and see what is happening with him or her and all the procedures that have been performed. It would eliminate the need to dig through piles of papers and search for what has been prescribed to whom. This would make the work much easier and more convenient for any specialist in the field, whether they are in an office or on a visit. It would also relieve a significant burden from parents, who often get confused and lose documents. This seems like a simple step and could be done relatively quickly, but it requires funding, and it is not yet in place.
What hinders development and is a major barrier. I see this worldwide, not just with us: the fragmentation between institutions, funding on a residual basis, and a lack of resources and people. The lack of cooperation between institutions is a big problem. To improve this, we need to change the paradigm. Just as attention to childbirth care has increased and is now seen as a critical medical field, society and ministries need to recognize both adult and paediatric palliative care as a priority, as a natural part of the overall healthcare system, and as an indicator of the healthcare system's quality. If we can change this perception, more resources will become available to organise care properly.
It is necessary to establish multidisciplinary associations and promote the policy that palliative care is a multidisciplinary service. It cannot be just healthcare or welfare alone; the Ministry of Education also needs to be involved. Through this, we need to organise cooperation between different countries so that such care becomes standard. It should be considered abnormal if palliative care is unavailable somewhere.
Cooperation between ministries and society is needed, so this issue is not treated as an occasional campaign but as a regular, understandable, and accepted problem. Currently, when people in the ministry are replaced, newcomers start everything from scratch each time.

Anna Gorchakova
What I find relatively easy is standardisation, as our country has all the necessary components: we have a registry, home visiting services, and inpatient facilities. I can't think of anything we lack; it seems we have everything. We love paperwork. Although the legislative process is slow, it is quite successful, so I would say this is an easy aspect for us. This is something that goes smoothly, and thank goodness for that.
Now, what is difficult for us. The first challenge is to ensure that all these standards are implemented and reach the people. This involves communication and education—not just of doctors and nurses, but of society as a whole. This is a very pressing issue in our country. We are all afraid of death; we don't even say the word. It’s strange to talk about palliative care in a country where the word "death" is avoided. When asked what happened to their father, people say, "My dad left." One wants to ask, "When will he return?" How can we develop palliative care if, as a society, we are afraid of death? I was just providing psychological support to a colleague whose mother passed away at 101 years old. The colleague demanded resuscitation and wrote complaints to the ministry. Her mother was tied to the bed to be fed through a tube. Her children couldn`t let her go peacefully, and the doctors couldn't do anything because of the complaint. This is an example of society's unpreparedness for the changes we are bringing. This is a difficult issue. Period.

Olga Skorbenko
I will add some specifics. Standards, I agree, are our growth point. But there are issues that could be resolved. For example, it could include communication with peer consultants, as is common worldwide in psychological support services. Peer support could be a significant help for parents of palliative children, especially at the beginning of their journey. This works very well with our patients` parents.
An important issue is psychological help, which should be easily accessible in public clinics. Unfortunately, qualified specialists in institutions are always lacking. They are not always good at communication. Non-profit organisations could partially address the psychological support for such parents.
Regarding insurmountable issues, as Anna Georgievna and I have discussed, parents currently have no choice: children born at 23 and 24 weeks gestation are intubated and resuscitated, which pertains to perinatal palliative care. I don't know if this will ever change because parents have no choice. It's the law. Children are mandatorily intubated and resuscitated, and they then stay in intensive care for a very long time.

Anna Gorchakova
This includes dying and oncology patients on machines. I want to add something about government contracts. We operate under government contracts. I want you to know that the cost of one hour of work for a social worker, doctor, or anyone else under a government contract is exactly two dollars. Who will work for that wage? That's it. That's the cost of one hour. That's concerning government contracts.

Anastasia Gulyavina (Moderator)
Thank you very much, Anna and Olga. It’s a very interesting insight that we live in an era where we are supposed to be eternally young and beautiful, and our parents are old and dying. This creates a huge gap of promotion of eternal life and the denial of death. This is a very interesting communication area that we haven't explored yet. It’s worth thinking about.

Nodir Rakhimov
What have we managed to achieve easily? We have so far opened two general hospices in Uzbekistan with 70 beds. Another 100 beds are planned in Tashkent and Samarkand. Additionally, we successfully opened a children's hospice, as Rustam already mentioned.
What are the problems? The primary issue is medications. We are collectively working towards obtaining tablet forms of morphine and hope to have applicators by the end of the year.
What have we struggled with? We have significant problems with staffing. We simply do not have enough personnel. We undergo some training here and there, read whatever we can, but there is no formal education available, not only for paediatric but also for adult palliative care.
Another sensitive issue is legal regulations. There is a lot of work to be done in this area. We are taking the first steps. Our first children's hospice opened only a year and a half ago, and the first adult hospice just a year ago. We have started developing programs for medical universities to at least train mid-level medical personnel; we are not yet considering doctors.

Anastasia Gulyavina (Moderator)
Nodir, thank you very much. I would like to clarify regarding the staffing issue. Does the problem with personnel arise from the fact that there is no opportunity to study, and now you are launching such an opportunity? Or is it because people are not interested in going into palliative care?

Nodir Rakhimov
Palliative care has only been functioning in Uzbekistan for about a year and a half to two years. We did not have this specialty before. Now that we have opened two hospices, the staffing issue arises because we still do not fully know whom and what to train for. This leads to the second question: who will come? I have been working in a regional hospice with 50 beds for a year and a half. Often, a doctor or nurse will join, work for a year and a half to two years, and then say, "This is not mine". Because, as you understand, it's a challenging work. Not everyone is suited for it. Those who stay are gathered for seminars and round tables, where we build our experience.

Rustam Norbaev
A lot has been done in this short period, but there is much more to do. Firstly, as my colleague mentioned, the staffing issue is critical. We are trying to address this, but it seems we do not need to reinvent the wheel. There is experience to learn from. Our legislation across the post-Soviet space is very similar, almost identical in some aspects. And so are the programs.
We are fortunate that our people are ready to talk about death. Today, I even have a television appearance to discuss this topic. Death was once a taboo subject, but now we are working successfully to ensure that not only the public but also decision-makers understand and support us.
Regarding what we can do, it is to train personnel. As I mentioned before, there is a shortage of Uzbek-speaking psychologists and doctors. So, this is our first task – to train them.
Otherwise, in terms of legislation and public awareness, as I said, there is growing recognition of the importance of palliative care, and we are moving in the right direction. In two to three months, we will have a separate law on palliative care. We hope that this law will bring significant changes. So, there is good progress here.

Yulia Streletskaya
In terms of growth areas, a paediatric palliative care department was recently opened in Astana. They have a good understanding of what palliative care is and its essence. However, there is a lack of financial support.
Regarding standards, the paediatric palliative care standard is still in the development and approval stage. This is a significant problem because, without this standard, we have no foundation to build upon.
The second issue, similar to our colleagues in other countries, is the shortage of specialists. We do not have a specialisation such as a palliative care doctor, nor do we have the necessary educational programs to launch full-fledged support. We also need to create at least minimal infrastructure.
These are the aspects that, in my opinion, can be addressed because we can influence them. Non-governmental organisations play a significant role in this, in the development of palliative care in the country overall. Probably, it is largely thanks to NGOs that we have palliative care.
What can be considered insurmountable? Probably everything is surmountable. With the desire and funding, mountains can be moved. I agree with colleagues from Uzbekistan and Belarus that a lot of work is needed to accept death on a social level. We cannot simply change people's mindset about doctors, the value, and the usefulness of palliative care, including its economic and social benefits for the population. This is a pivotal issue, and it's hard to get through to people.

Nurila Maltabarova
How can we grow? We want to extend the experience of three cities to the entire country. It is crucial that government bodies understand the necessity of palliative care, so we have not just isolated beds in intensive care units but actual palliative care centres. We are currently working on this.
Another important aspect is understanding who a palliative care doctor is and what their specialty should be. Our university is already incorporating palliative care training hours into its programs, not just for paediatric care but overall. Today, most of our paediatric patients are in outpatient settings, meaning in clinics. A paediatrician should understand, upon graduation, that they will encounter this category of patients.
These are the two growth points we are currently working on, and I hope we'll manage to organise this successfully.

Irakli Vetsko
I will start with the areas where we demonstrate good growth. However, I must say that there are no aspects of palliative care in Georgia that develop quickly. There are some areas showing the most rapid growth, particularly home care services. Hospital palliative care departments are also well-developed. But I must mention that we face the same challenges already voiced by my colleagues from other countries. The political program exists, but on paper everything works significantly better than in practice. Specialists providing home care services have very low salaries.
The platform I mentioned earlier is still not fully developed. There is much work to be done. But these are the directions that are developing.
What is difficult to change? The main issue here is the training of personnel. We have many training programs, for example, for those who would like to register and provide home care services. We have also participated in such training, it was mandatory for us. But the training is only 62 hours, which is not enough. We need more comprehensive education, providing more details and practical experience, to have a more holistic approach to home palliative care. Our staff needs to be better prepared, especially given the realities I mentioned today, such as many people leaving the country.
We also need to rethink the approach to the payment for such services at the most general level. Another aspect that needs development is providing support to children in the regions of our country. This is mainly related to the lack of financial resources, the equipment of hospitals in the regions, and the number of staff working there.
I would also like to mention the awareness of the population, including those working on these programs. Of course, there are professionals in palliative care, but often we see that people developing such programs are administrative workers, lawyers, sitting in offices and working on documentation. They are not palliative care professionals.
It is important to mention culture—how we approach the issue of death and hospices. In palliative care, we see a very close connection between culture and social approaches.

Prof. Julia Downing
Thank you very much. It has been a pleasure to listen to your speeches. It’s great that all the countries have identified what are known as “low-hanging fruits”—quick wins that can be achieved. However, there are challenges that seem to be widespread across many countries.
Let's start with what is known as public understanding, not just of palliative care, but of complex healthcare issues in general. This includes the cultural and social attitude towards death, the tendency to avoid this topic, and the unwillingness to discuss it. It’s clear that we will all die one day, but the issue is that society is not ready to talk about it. Different parts of the world have used various campaigns to address this. For example, in Malaysia, they tackled the "elephant in the room" by placing numerous elephant models in a large shopping centre and talking to shoppers about death and palliative care. In the UK, a recent study examined how we communicate the topic of palliative care to children and how we can change societal attitudes towards it. Three conclusions from this study were:

1. We try to share as many stories about palliative care as possible.
2. Children continue to be children within palliative care.
3. We talk about life. Palliative care is not just about death but also about life. We try to shift the focus of our attention from dying and death to living.

This is just one of many examples of how to work with this topic. There are numerous such initiatives. By doing this, we can influence society and change its perception. This involves engaging with the media, press, and so on.
Secondly, political will is always a challenge, to be honest. This work always requires a tremendous amount of lobbying efforts and time, often – many years. I remember travelling in a taxi with a colleague when his phone rang. It was the minister calling. His mother needed palliative care. This wasn't about paediatric palliative care, but the important point was that the minister had a personal experience with the need for such care. We`d realised that this minister could become our advocate, our pioneer, and our spokesperson on this issue. Of course, governments change, and there is a constant shuffle in some countries with new national strategies and political courses. Navigating through them is challenging. However, there are examples from various countries that show how well people have managed to change legislation and work systematically with the government, providing us with some motivation.
Another important point is education and training. We don’t need to reinvent the wheel. For example, there are currently about 120 training programs on palliative care worldwide. Instead of reinventing the wheel, let’s share existing training programs and experiences with each other through workshops and seminars, including at the level of general practitioners.
Finally, funding and resources. Obviously, in many countries, the salaries of people working in palliative care are insufficient and should be significantly higher.
Access to medications is another critical issue. These are the problems I have identified.
The comment about reinventing the wheel struck me as particularly important. Clearly, we can’t simply Ctrl C-Ctrl V, copy and paste key points from one country to another. But we can rely on standards. We don’t need to start from scratch. Each country has different cultures, social institutions, and societal preferences, but nevertheless, there is no need to start from a baseline, it is crucial.

Anastasia Gulyavina (Moderator)
What assistance from the international community (and from whom?) could support the development of paediatric palliative care in your country? Here you can suggest some specifics or even wild ideas. Sometimes we do not understand how an international community can be of help, it can be something beyond the evident like education or experience exchange. I welcome you to answer as detailed as you find convenient, or event to fantasise. Sometimes from such ideas that seem the most ridiculous the most effective solutions are born.

Yulia Streletskaya
I agree that there is no need to reinvent the wheel when everything has already been invented, but it would be helpful to have research results that we can use for advocacy with higher authorities to make the government and the ministry understand the importance of establishing such criteria.
It would also be beneficial to conduct a needs assessment with international involvement. Involving international specialists to help us conduct various studies would be valuable. Although such assessments have been conducted in many countries, if we can provide Kazakhstan-specific data, with Kazakhstan figures and realities, it will be more impactful for the parliament and the ministry.

Irakli Vetsko
I think we all agree that there are many available resources that do not need to be recreated. However, as I mentioned in one of our earlier meetings with PACED, it would be extremely useful for us to have something like a comprehensive database accessible to all palliative care institutions. What do I mean?
We need a section for financial resources, for example, organisations that provide grants for palliative care. We also need physical resources, such as used equipment and specialised furniture that other hospices are willing to donate and transport to us. And we need access to these resources. Additionally, we need resources in the form of knowledge and experience. I know that all of us, all the centres represented here, produce and accumulate a certain amount of materials, such as brochures for parents or guardians written in simple and understandable language. It would be great if our organisers here, PACED, could work with us to create a platform where we could collect, translate, and share these materials with each other. There is also the volunteer resource. There are many large international organisations like WHO, ICPCN, and PACED, all of which are public organisations distributing resources. Yet, honestly, sometimes it is very difficult to access, obtain, and find these resources.
Therefore, I believe that consolidating all these resources in one place would be an incredible help from international organisations, structures, and the community.

Anna Gorchakova
Everything my colleagues have discussed is very useful, and I agree with all of it. Specifically, in Belarus, we need what I have already mentioned. Palliative care is not about death; it’s about life. For me, palliative care is always about balance. This balance is disrupted here. We live to the end; we do not die; we treat until the last moment. Age is not a barrier, nor are illnesses. We will resuscitate at 24 weeks gestation. And we will resuscitate a child with metastatic osteosarcoma because we have to. We have mortality and survival indicators. We need clear guidelines: where palliative care ends and where resuscitation begins. Who should not be resuscitated? Why not resuscitate? This is the first point.
Secondly, who is a palliative care patient? I no longer understand; it seems anyone can be included. I have had a cough for four months; should I be in a palliative care group? We need research, a clear document, and an evidence base. We have become so inclusive that it is hard to see the difference between curative and palliative care.
Finally, my sensitive topic. I come from oncology, and oncology is very important to me. We have lost oncology in our country. As I mentioned, we treat people until the very end. If we can't help in Belarus, we go to Russia for treatment. We continue chemotherapy until the last moment. But where is palliative care? So, a child has first stage cancer; how do we help the child? Psychological support? Let’s learn how to talk to such patients. Yes, they are dying; they will not survive, but targeted chemotherapy helps them temporarily. When they leave the hospital, what should we talk to them about—death or life? This is unclear. We need to learn this somewhere.
Olya will talk about her concerns regarding the youngest of children. Here, too, the issue is resuscitation and information. It is crucial for us to learn communication. Doctors need algorithms. They need to know how to communicate in different situations. During a training course, they ask me: “Give me algorithms. I have fourteen visits a day, and by the end of the day, I’m losing my mind. Give me an algorithm, even if it’s approximate”. We need to find a way to address this.

Rustam Norbaev
First of all, thank you very much for this roundtable. I hope we have a long collaboration ahead of us, as we have much to learn, especially us, because we are the newest in the field. Perhaps soon Tajikistan will join us; we are also supporting them in this direction.
International organisations can primarily help us with training. Sharing standards. We will translate and integrate all of this ourselves. Additionally, we have a four-year plan with WHO, and we finally have funding for palliative care development. So, we will have funds for training, and we need to find places to send specialists for training that are close in terms of legislation and mentality. I don't like this word, but it plays a significant role, especially in palliative care. Probably, training is the main thing. Everything else—we have people and the government starting to listen to us. We hope that if we train well and perform well, everything will work out.
We will show the government that palliative care is not as expensive as they imagine; it is much more economical than other types of medical care, meaning it is even beneficial. I hope we can fight for this. So, the main thing is education.

Anastasia Gulyavina (Moderator)
Nodir, thank you very much. I see almost everyone has their cameras on, could you please raise your hands if you also attract funding from commercial organisations to support palliative care projects?
Latvia, Armenia, Georgia, Belarus, yes, thank you very much. It was just mentioned that there is enough money to maintain but not to develop. As far as I know, some countries have experience in collaborating with businesses. This is also one of the topics we wanted to address in the fall, namely fundraising.

Anda Jansone
I've highlighted three main blocks of needs. One is the exchange of information, which would be useful for all countries, including those represented here. Sharing practices in innovation is crucial. As Julia mentioned, there are 120 training programs and standards we can use.
Since we are all striving to prove that paediatric palliative care is necessary and that what we have already started is beneficial and needs to be developed, we need to understand how to develop it and do so collaboratively between countries. Maybe we could conduct a small joint research project that would lay the groundwork for fruitful cooperation. If the research project is collaborative, the findings can be integrated into all participating countries. It’s better to undertake such projects together. These could be various projects that allow each country to prove why certain aspects are necessary with their own examples.
It's important to hold conferences where representatives from ministries, WHO, ICPCN, and other organisations are invited. This way, all officials can see and hear everything firsthand.
Lastly, advocacy and lobbying are crucial for me. Maybe we could organise a roundtable or a training course on this. These issues are relevant in every country, regardless of the level of palliative care. Thank you.

Julia Cirule-Galuza
I agree with Anda. Additionally, besides innovations per se, it would be interesting and useful to look at how criteria for evaluating the work and quality of palliative care are formulated in different countries. I know that the USA is currently undergoing significant changes in this area. This is something we can use to prove to our ministry that we are indeed working. We cannot prove this solely through the number of visits or contact hours. It's important for palliative care to be recognized by the state and globally.
Regarding innovations, it would be beneficial to have a centre that helps include our children in research studies. When we look at palliative care research, the problem is always the small number of participants. Such research is very useful. Additionally, if our children participate in these studies, it helps us stay informed and learn new things, and it gives the patient and parents some solace knowing that their child's life contributes significantly to global knowledge and processes. This way, the child leaves a mark in history.
Educational meetings are important. It would also be useful to conduct interdisciplinary events, including representatives from the ministries of different countries. These could be online, offline, or in various formats, so that the issue of paediatric palliative care, the possibility of death, and the fact that death is a normal part of life, becomes a norm for society. Just as we are born, we also do die.
I was very pleased to hear today about the work being done in other countries and to see so many enthusiastic people, full of energy to improve palliative care in their countries.

Anastasia Gulyavina (Moderator)
Julia, thank you very much. Regarding interdisciplinary meetings, we are ready to initiate, support, and organise them. Of course, your feedback and understanding of which colleagues can be involved are crucial. We have already formed a community, but there are gaps and people we simply don’t know yet, whom we might want to invite but lack access to.


Prof. Julia Downing
Thank you very much. Like all of us, I find it quite challenging to share knowledge and collaborate to avoid reinventing the wheel.
For example, the topic of research frequently came up during today’s discussion. Colleagues mentioned the importance of demonstrating the impact of palliative care on society. Currently, a paediatric palliative care impact scale is being developed in various parts of the world. This is something we can join, try to develop, and adapt it to our regions. Of course, this scale needs to be used in the local language of a region. This is an area of research that you can join.
It was also mentioned today—perhaps by Anda—that we need to show the necessity of paediatric palliative care and that we can do something about it together. We are already doing this in some countries. First, we conduct an assessment of the need for paediatric palliative care in a country. Based on this assessment, we provide recommendations and can demand commitments from governments to develop certain services. We have protocols for this, and they can be adapted for different countries.
We also need to determine the number of children in the country who need palliative care. Here, we work with colleagues from the relevant commission and several people who are trying to assess the need for paediatric palliative care worldwide and in specific countries. We plan to publish this research, and when it happens, we will be happy to conduct such a study for you.
The issue of costs and expenditures was raised. We, at ICPCN, in collaboration with the University of Edinburgh, are conducting research to develop a so-called palliative care package for a childб and an extended package, and we are calculating its cost. So, work is being done in this direction as well. We would be happy to collaborate with you to make our calculations more accurate.
Regarding education—there is a wide range of training programs.
The problem of resources is a very good question, as we think about how we can combine our resources for the common good. It seems that the speaker from Georgia raised this question. At ICPCN, we can organise a central hub to collect resources in different languages.
This is what is happening now. It is wonderful to have forums like this where we can learn from each other and understand how the international and regional communities can cooperate to support and develop paediatric palliative care, share experiences, and promote beneficial initiatives.
We are advocates for children in need of palliative care. Therefore, it is crucial to collaborate with international organisations like PACED and our ICPCN. The question is how we will collaborate and how to make it most beneficial for our wards.