This webinar brought together leading experts and professionals in paediatric palliative care in Latvia. We delved into the role of the Riga Children's Clinical University Hospital in shaping paediatric palliative care, explored the contributions of non-profit organisations, discussed the unique aspects of the work carried out by nurses, psychologists, and chaplains within interdisciplinary teams, and, of course, addressed the challenges faced by palliative services in the context of limited resources.

You can watch the video recording of the webinar in English or Russian on our YouTube channel.
You can read the Russian version by following the link
Content

Introduction
Ira Chernozhukova, Moderator, PACED Programme Director

Development of palliative care for children in Latvia took off exactly 25 years ago. On behalf of the PACED Foundation, I would like to congratulate you on this honourable anniversary and wish you inspiration and further professional growth.

Ira Chernozhukova / Weninar PACED
Today, our colleagues from Latvia will share how paediatric palliative care is organised in their country, along with the extensive professional experience accumulated over these 25 years.

My name is Ira Chernozhukova, and I represent the Foundation for Palliative Care Education (PACED). We are a charitable foundation that supports palliative care specialists in Eastern Europe, the Caucasus, the Baltics, and Central Asia. We assist them in acquiring professional knowledge and exchanging experiences.

I am pleased to introduce our speakers today:
  • Prof. Dace Gardovska. Head of the Children's Disease Clinic at the Children's Clinical University Hospital (Riga), Head of the Pediatric Department of the Medical Faculty of Riga Stradins University.
  • Dr. Anda Jansone. Founder of palliative care for children in Latvia, Chairwoman of the Board of the Society for Child Palliative Care, Head of the Service for Psychosocial Rehabilitation and Palliative Care for Children, International expert of the International Children's Palliative Care Network.
  • Sofia Tomase. Deputy Head of the Children's Palliative Care Service at the Children's Clinical University Hospital, Riga.
  • Irina Bisiniece. Psychologist of the Children's Palliative Care Service at the Children's Clinical University Hospital, Riga.
  • Dr. Yulia Cirule-Galuza. Head of the Liepaja Children's Palliative Care Service at Liepaja Regional Hospital.
  • Gundega Blizneca. Senior nurse of the children's department of Liepaja Children's Palliative Care Service at Liepaja Regional Hospital.
  • Janis Balodis and Varis Bogdanovs. Chaplains of the Society for Child Palliative Care.
I now give the floor to Prof. Dace Gardovska, who will discuss the role of the Children's Clinical University Hospital in the development of paediatric palliative care in Latvia.



Dace Gardovska

Prof. Dace Gardovska / Webinar PACED
Today, I will briefly speak on the role of the Children's Clinical University Hospital in the development of paediatric palliative care: the history, the experience we have gained, and how it inspires us to do more, sometimes more than seems possible in certain situations.
The Role of the Children’s Clinical University Hospital

There are at least 7 main areas of responsibility in paediatric palliative care.
  1. Before paediatric palliative care was officially established, we had already had an approach and an interest in providing such care to patients who were being discharged from the hospital when the hospital could no longer help them.
  2. There is, of course, the aspect of collaboration, namely, developing a network of contacts.
  3. Our hospital also plays a role in developing political programmes, lobbying the importance of paediatric palliative care.
  4. We focus on supporting families and providing consultations.
  5. We provide comprehensive care.
  6. Of course, education and training are essential aspects.
  7. Research and innovation are equally important.
Of course, all this requires funding and human resources. I believe that human resources are the most important aspect of the entire process.

Historical Overview

The history of paediatric palliative care in Latvia began in 1994 when U.S. President Bill Clinton visited Riga. During this visit, the First Lady of Latvia, Aina Ulmanis, hosted a reception at the House of Assemblies. Twenty women were invited to meet Hillary Clinton. The recommendations given to participants suggested discussing “women's” issues: movies, family life, and so on. I was invited to this reception. I realised that this was probably my only chance to meet and talk to the First Lady, and I should talk about the difficulties and barriers that paediatrics faces in Latvia.
This visit marked the beginning of a new era in paediatrics, an era of collaboration with the United States. With their help, we organised a healthcare partnership programme. A year later, we went to the White House and signed an agreement.
In the photo, you can see our team in Washington.
Medical team in Washington / Webinar PACED
We started with a general approach to education, to technology, and to development of new trends in paediatric care. The first lesson we learned was, “When you are armed with a righteous cause and a precise objective, take action–success might just be within your reach”.
“When you are armed with a righteous cause and a precise objective, take action–success might just be within your reach”.
I remember we were to St. Louis to visit a local hospital. We had a secondary task — negotiate with the St. Louis Zoo and suggest collaboration with the zoo in Riga. We succeeded. I remember standing with colleagues from the St. Louis Hospital by the giraffe enclosure and discussing: if we managed to unite two zoos, why can't we cooperate to establish paediatric palliative care in Latvia?

The second lesson from our experience, “Cultivate compassionate and meaningful connections with your partners; it is through collaboration that creativity flourishes”.
“Cultivate compassionate and meaningful connections with your partners; it is through collaboration that creativity flourishes”.
Returning from the U.S., I began searching for colleagues I could trust with our mission. That is when I found Dr. Anda Jansone. In 1997, we launched paediatric palliative care in Latvia. Doctors from the Children's Clinical University Hospital travelled for training, studying the discipline in-depth, and learning from colleagues in other countries. In 1998, a paediatric palliative care department opened at the Children's Clinical University Hospital.

Finally, the third lesson, “Remember that wisdom and talent abound in your surroundings – look for them and they shall emerge”. We found many people who have contributed immensely to our cause.

In conclusion, I wish us all the best on this journey. My only goal today was to inspire you to keep going in your work. Together, we can achieve a great deal. Thank you all, and good luck.
“Remember that wisdom and talent abound in your surroundings – look for them and they shall emerge”.

Dr. Anda Jansone
Anda Jansone / Webinar PACED
What have we accomplished in these 25 years of paediatric palliative care? As you already know, the idea appeared in 1994. In 1997, we founded the Society for Child Palliative Care, officially registered it in February 1998. By the end of that same year, the first palliative care team started working at the Children's Clinical University Hospital.
I like to joke that there were four and a half of us on that team because there were four specialists: me, as the doctor and leader, a social worker, a nurse, and a chaplain. And we all started working part-time (only half of a workday) because we needed to study.

Home palliative care only appeared in 2000. We took care of five patients, working as volunteers, without pay, because it was very important for us to understand whether our model was applicable.

That same year, the Children's Palliative Care Department was opened at our hospital. The photo shows the day of the department’s opening.
Chronology of Palliative Care Development in Latvia / Webinar PACED
We had three main areas of responsibility:
  1. service accessibility;
  2. education;
  3. lobbying for palliative care in government, because without a legal framework, it is impossible to develop and expand access to paediatric palliative care.
We chose a so-called “Hospice Based” model. Our model is quite complex because palliative care in Latvia is a unique legal field involving two ministries: the Ministry of Healthcare and the Ministry of Welfare. We receive funds from the Ministry of Healthcare for the medical team—doctors and nurses—in the two hospitals that currently have palliative care departments: the Children’s Clinical University Hospital and the Liepaja Regional Hospital. The second source of funding is through the Ministry of Welfare, which legally delegates this funding to the Society for Child Palliative Care, a non-governmental organisation, which enables the team to include chaplains and social workers.

Ours is a psycho-bio-social-spiritual model, a holistic model focused on the family and ensuring quality of life. The foundation of the model is home care. Palliative care teams in Riga and Liepaja work 24/7, any day of the year. There are also remote consultations, 24/7– by phone or online. We provide consultations in the hospital when patients are being discharged in terminal stages of illness to be transferred to a palliative care team. We also support grieving parents.
"Ours is a psycho-bio-social-spiritual model, a holistic model focused on the family and ensuring quality of life".
Statistics/ Webinar PACED
The slide shows a constant increase in the number of patients each year. You can see a sharp increase in patients in 2018, thanks to the launch of the Liepaja hospital team.

For the past five years, we have been surveying parents about their satisfaction with our care. We see that about 50% of children under our care have not been hospitalised even once in a year, which means that the team is working well, and children can remain at home and receive all the necessary care, even during exacerbations of their chronic illnesses. Therefore, there are less hospitalisations, emergency calls, and emergency room visits—saving healthcare costs.
Survey/ Webinar PACED
Families report feeling safe and supported by the team — 97.3% of respondents. 93.6% rate the services as good and trust the team. Trust is a crucial aspect. Parents know they can contact us anytime, day or night, and receive the help they need. 89.1% agree that attention is given not only to the child’s needs but also to the family’s needs.

The Society for Child Palliative Care ensures the integrity of the process so that patients and their families do not feel the impact of funding coming from different ministries and receive a complete package of care, regardless of which ministry we are under.

The Society for Child Palliative Care currently has 36 active projects — regional and international. The Society also develops strategic documents.
For the first 20 years, the Society, as a non-governmental charitable organisation, helped us with many things: transport, fuel, communication, nutritional supplements, and much more. We have worked long and hard to secure government funding for all this.

We have several educational programmes: for students, healthcare workers, politicians, and the general public. In 2017, we finally introduced a state-level residency programme in palliative care. The programme lasts 11 months and covers both paediatric care (one-third of the programme) and adult care (two-thirds of the programne). We have already trained three teams in different regions. The Liepaja team has been successfully working since 2013.

We also have programmes for volunteers, a guide for coping with grief after the loss of a child, and a training programme for chaplains, which is very new, introduced this year. The first chaplains are already being trained at the Latvian State University, where our chaplains are also teaching.

I want to say a few words about the educational programme for schoolchildren. We visited several schools where we explained to younger students what illness is and how we can help if there is a sick person in the family. It turned out that children are very responsive; they were happy to talk about this topic, asked questions, and shared their experiences.

We also have a publishing programme: brochures, booklets, books in Latvian and Russian. There are also documentary and educational films, a YouTube channel, and video instructions on DVDs that we can give to parents, such as how to care for gastrostomies, and much more. We also have a website with a lot of useful information for professionals, families, and anyone interested. Our social media platforms are active, we also share our data there.

An important part of our work is building a legal framework and securing funding. For example, in 2015, we succeeded in obtaining state funding for children's nutrition. There are many other projects and working groups we participate in to develop hospices and home palliative care.

We also work on international cooperation in palliative care. The photo below shows the Belarusian children's hospice.
Since 2015, we have actively used telemedicine. When we started, there was no WhatsApp or Zoom yet.

We have a Respite Care Programme, including camps and meetings. Support groups for parents, siblings, a grief programme, various charity events, concerts, and activities. Every year, we celebrate World Hospice Day. A unique project is “The Dream Bridge” with Angela Forker. Angela is an American photographer who came from the U.S. four years ago. Ten families have already participated in her project. She creates amazing pictures, each telling a story about a sick child. We held exhibitions in Latvia, Estonia, and Lithuania.

Of course, we also face challenges. The fact that we are under both the Ministry of Healthcare and the Ministry of Welfare complicates organisation. Another big challenge is that hospice services are not available to children. There are no children's hospices in Latvia, so if a child cannot stay at home, there is nowhere to go. Another challenge is the lack of human resources. Finally, there is insufficient awareness among doctors and social workers about what paediatric palliative care is and how it should function.

Sofia Tomase
Sofia Tomase / Webinar PACED
I have been working with children in the palliative care service for over ten years. I started as a nanny in a social care centre for children.

The Children's Clinical University Hospital is the only children's hospital in Latvia. 99% of all children are being treated here. The Children's Palliative Care Service at the hospital has existed since 1998. It is a department, but we are called the Children's Palliative Care Service. All patients are registered with us only by the decision of a medical council.
I will talk you through the path a patient takes.

Usually, our patient is born with a pathology. We assess the child according to five international categories of palliative care or three disease categories.

For example, a patient is in the neonatal department. The attending physician treating the patient at the time sees that palliative care is necessary, that the child meets these five categories of palliative care or three disease categories, and invites our doctor for an initial assessment to determine whether the child meets these criteria.

A medical council is held, primarily aimed at the parents. We explain the severity of the situation and the illness to the parents. They ask questions, and we develop a medical and care plan for the child.

When parents agree (and it is always the parent’s choice whether to accept palliative care), the patient is prepared for discharge. This is usually a very lengthy and meticulous process. We train patients and their families in managing individual needs. Typically, patients need about two to three medical devices. For those who have never encountered this before, it is difficult to accept, understand, and, therefore, difficult to learn. We train parents on how to care for nasogastric tubes, gastrostomies, and tracheostomies. The training process usually takes three to five working days. Occasionally, more time is required, for example, if artificial ventilation is needed at home.

Before discharge, usually a day before or on the day of discharge, we coordinate with the family doctor about cooperation: how and what to do, what are the boundaries of the family doctor's responsibility, and how we can help? There is a significant difference between a patient living in Riga or Liepaja and its surroundings, where there is a palliative care team, or living in a region of Latvia where such a team does not exist.

As we all know, there are 3 international disease categories:
  1. Life-limiting disease – a disease that leads to death, such as trisomy, Patau syndrome, or Edwards syndrome. Last year, 53% of our patients fell into this category.
  2. Life-threatening disease – premature death occurs, but there is a chance that children may reach adulthood. This accounts for 32%.
  3. Incurable diseases – a relatively small percentage, only 15%, which are terminal diseases where death is inevitable. So far this year, only 16 children have died. Most families of these children chose home as the place of death, which also speaks to the quality of palliative care and home support.
Statistics / Webinar PACED

A bit of statistics for the past year. I will only speak about the Riga team, as I have no data on the Liepaja team. 275 patients received our care. Of these, 47 patients live in social care centres. In our country, parents can get a break. Depending on the region, this can be up to 40 working days. Parents can transfer the child to this centre and take a vacation or attend to their affairs. Or if parents realise they cannot cope, the child remains in this centre. Parents are not deprived of any rights, they can take the child back at any time—permanently or temporarily—and visit at any time.

Also, of these 275 patients, we have 17 patients who have already reached the age of eighteen, between 18 and 31 years old. Currently, we provide care for youth up to 24 years old. However, if a child is on artificial ventilation, they remain under our care. The oldest patient is 31 years old, 16 of which have been on a ventilator. He has Duchenne disease; he is very intelligent, developed elaborate speaking skills. He remains with us.

We have programmes for patients on enteral feeding: children receive it at home completely free of charge, covered by the state. It is even delivered to their homes, so they do not need to go anywhere or order it from a pharmacy. The necessary portions are delivered for a whole month.

What services are available in paediatric palliative care?
  • Specialist consultations. The patient has access to a palliative care doctor, nurse, and psychologist.
  • We fully equip our patients with the necessary medical devices, such as a pulse oximeter, stationary oxygen, or a feeding pump.
  • Medical nutrition is provided throughout Latvia, in any region.
  • Disposable materials, such as catheters, tracheostomies, gastrostomies, and pump systems, are all provided free of charge, covered by the healthcare system.
  • Psychological support is vital. How do you cope with such a difficult situation? Probably the hardest thing in life is when your child is incurably ill, and our wonderful psychologists help parents cope with this. Psychological consultations are always free for our patients and their families, with no long waiting times. We provide support during crisis moments: at home, in the hospital, online, or by phone.

What are the benefits for employees? One of the important issues of our profession is supporting colleagues. Without internal motivation, it is impossible to work. The hospital also provides free psychological support, educational courses, and additional leave. We have the opportunity to study, for example, the English language or attend choir classes to reduce the risk of burnout. Remember, if you work in palliative care or are building it in your country or region, do not forget about the employees, the people who perform this challenging work.

There was a case when we organised an event for a family. It was canine therapy, that is, therapy with the involvement of dogs. The child smiled, there was an emotional response. And his mother said that she'd never thought her child could be so happy. This example shows the necessity of such therapy. Even if the child does not speak, even if they cannot say they are happy, they can still show positive emotions in other ways. All this is possible thanks to the palliative care service and our hospital.

Irina Bisiniece
Irina Bisiniece / Webinar PACED
I have been working as a psychologist at the children's hospital for six years. It is an immense experience that brings serious reflections. I am an existential psychologist, and this is perhaps the best approach for such work. You deal with many challenges related to the meaning of what is happening, the meaning of what is not happening, the meaning of life. Behind medical care, research, and meeting social needs, behind all these diagnoses is life.
One of the main challenges for a palliative care psychologist is constantly being in the unknown. If medical and social workers have some understanding of what to expect, for the psychologist, it is a constant confrontation with the unknown. I can never predict what I will encounter.

Primarily, the psychologist works with parents. Often, children in paediatric palliative care care are non-responsive. Parents sometimes say, “You work in a children's hospital, don't you? Shouldn't you work with the child?” My response is that much of a child's condition depends on the parents' condition, how they cope with themselves, their emotions, and their tasks.

When parents learn of their child's diagnosis, the first state is, of course, shock. The reactions, however, can vary greatly: intense emotions, emotional blocking, or complete absence of reaction. Here, I want to emphasise something very important: all parental reactions are appropriate, there are no inappropriate parents, there are no inappropriate reactions.

The first task of a psychologist is crisis support, observing to which extent is a parent in touch with reality. Contact with oneself usually weakens in such moments.
There was a case: a relatively grown-up child was found on the street, resuscitated, and had severe brain damage. His mother behaved so appropriately that it greatly concerned me. I visited her more often than I usually visit families, three times a week. I asked myself, “Why do you keep coming?” It was difficult for me to answer this question. But the mother did not push me away, although she sometimes looked at me angrily. Once I asked, “How do you feel about my visits?” She looked at me angrily again and said, “You know, I don't really like it, but I hope you'll notice it when I start losing my mind.”

I must note that especially in this initial work, we, as psychologists, often experience a lot of rejection from parents. They are not always ready, or more often, not ready at all, to engage in serious psychological conversations. Therefore, for a psychologist, it is very important to develop resilience to this rejection while remaining clear, empathetic, compassionate, accepting, and at the same time accepting rejection. This is not an easy thing to do.

At first, of course, the main role belongs to medical and social workers. At some point, a psychologist may step in to establish contact and prepare themselves and the family for future work, which will come in due time. At this stage, parents often do not understand what they need or are afraid to ask for something. Here, the psychologist can help them become aware of their needs, which they can address with other palliative care workers.

It is important for the psychologist to gently convey to the parents that a brighter future is possible. One case: the client looked very gloomy, with no hint of a smile. Her child was two months old. Later, much later, she recalled how much a phrase I said meant to her, “It may not seem like it to you now, but there will definitely come a day when you can smile.” She didn't believe me then, but she remembered. You have to be very careful with this though. There is a case that I often recall, thank God it’s not mine. A psychologist entered a ward where a mother was sitting, her child taken away to have another stoma installed, and said, “Dear mother, why are you crying? Look, the sun is shining outside! Everything is so good!” This is an absolutely wrong approach.

When parents have dealt with technical difficulties, a psychologist's work commences. They know how to live with it, but they don't know how to deal with it. That is when somatic problems begin: panic attacks, apathy, anhedonia, sleep disturbances, not only due to the children needing care at night but also due to their own psychological state. And, of course, internal conflicts, a loss of meaning. This is when long-term work begins, and it cannot be rushed — it shall be deep and slow.
Relationships between parents and within the family may change. Often serious problems arise with siblings, especially older ones, because one parent suddenly disappears from the family, usually – the mother. The mother was there, and suddenly she's gone. And she disappears not for two days but for a month, two, three months. Sometimes parents feel hostility towards their healthy older children. Questions may arise, such as “Why is this one sick and that one healthy?” Manifestations can be very different. And all of them are adequate, natural reactions. Also, it's often difficult to accept social isolation.

I remember one important question, hearing that I understood that my work was almost done there. It was the mother of the grown-up child, who asked this question. I mentioned her above. She asked herself, “Is my child dead or alive?” It was a question that no one but her could answer. And she answered it this way, “My child is alive because his presence changes the lives of those around him.” This is indeed what happens. Yes, these children are seriously ill, incurably ill. And they greatly change our society for the better. They make us more human, more understanding, more accepting of life in its various manifestations.

Another case that I will remember for life. I came to a girl who had been bedridden for 12 years—very small, very thin, ate little, no reactions, no contact. And suddenly, I felt as if I had connected to her and realised that this girl's life is full of events. She breathes. Who among you now feels how the air enters and exits through the nasal passage? She breathes, and I realise, she feels it. She feels the blanket touching her skin. She feels the movement of air. She feels how medicine or food enters her stomach through the gastrostomy, some intestinal movements, she hears sounds. In fact, she experiences many events that we ordinary people pass by without noticing. In our hustle and bustle, we forget that all this exists. The most advanced people in meditation take years to learn to feel their lives as this girl does. And my main conclusion: paediatric palliative care is certainly not about death. It's about life, very much about life. About the great possibilities and challenges of life. About how the entry of such a child into our lives prevents us from hiding anymore, how such interaction highlights and reveals all problems, not only in families but everywhere, including in us, the people helping these families. I can say that both from a professional and life perspective—this is probably the best experience that has ever happened to me.

“My child is alive because his presence changes the lives of those around him”.

Dr. Yulia Cirule-Galuza
Dr. Yulia Cirule-Galuza / Webinar PACED
I have analysed why it turned out in Latvia that, besides Riga, there is only one other children’s palliative team, and I shall explain this through theories of social intelligence and social development, whose author is the well-known international psychologist and coach Vsevolod Zelenin.
"In order to navigate the medical system, you need to be a very healthy person".
In Liepaja, we had many cases where, during the first conversation, parents said, “I almost never saw a child with a disability before. But now, when I have a sick child, I see how many of them are around.” This is true, focus shifts, and life is being perceived differently. This is why it is so important for palliative care to be accessible. Among colleagues and friends, we have a joke that in order to navigate the medical system, you need to be a very healthy person. It's challenging to manage everything without support.

Before paediatric palliative care, there were two camps: medics and parents. Parents did not understand what was happening. I was a young doctor whose son had recently died of leukaemia. I met Anda and Aina in Riga when I was a palliative care client myself. Then I returned to Liepaja. Gundega and I tried to help children who were in particularly severe conditions. Then we met Ilze Durneva. She was already running a non-governmental organisation “Dijvanagi” and also raising a special needs child. Together we discussed that a translator was needed, someone who would translate to parents what the doctor was saying, to explain to parents what they were being advised. Because often, during the 3-4 hours that parents drive home to Liepaja from the children's hospital in Riga, these parents are in a crisis state, they forget what they need to do, they stop understanding the recommendations. And we decided to perform that translator`s assignment.

Strangely enough, although several teams were trained, ours is the only one still working and continuing to develop. Until 2010, there was no official palliative care in the region, but we had several children in departments who needed palliative care. We managed to convince national health services that we could work as a day hospital, that is, to go to their homes and provide care. It was all more or less on a volunteer basis.

Gradually, we managed to gather a whole team of people interested in palliative care, although some did not quite understand what it was. We began visiting patients' homes, helping, consulting, and thinking on how to make it official. Because, of course, you cannot work long on just enthusiasm. Then we managed to get temporary funding to undergo training in Riga.

So, we had a trained team but no funding. We managed to create a palliative care office in the hospital, but again, the Ministry of Healthcare only pays for a part-time psychologist, a nurse, and a doctor. We didn't have chaplains then; sometimes we invited a priest. Of course, it was challenging because the role of a chaplain and the role of a priest are very different, although at first glance they seem similar.
Social workers worked with us as volunteers for a long time, simply helping. Since 2018, the Ministry of Welfare has been involved in collaboration with the Society for Child Palliative Care, and now we have a full-fledged team with medical services based in the hospital, funded by the Ministry of Health, while the social part and chaplains are funded by the Ministry of Welfare.

Every organisation, just like every person, goes through certain stages when implementing an idea. I will tell you how we went through them and how we are still functioning. The risks are very real. If the team fails at one of these stages, it simply ceases to exist, or the idea itself has to be transformed. It's very important to successfully navigate this journey.

  1. The very first stage is need, when we have an idea but nothing else. No resources, no money, no people. At this stage, people often stop, leaving it just an idea, a dream, saying, like Ostap Bender, that we have a great project, and we will implement it for sure, when Europe gives us money. Or like this: the world is unfair, we have such a wonderful idea, but no one`s helped us. Or: there will never be enough resources for everyone, who are we to ask? It's also risky to stay at this stage and never offer your services for money, continuing to work on a volunteer basis. Because: who are we to ask for funding? But assistance based solely on volunteer labour is not sustainable.
  2. Resources. When we already receive funding, technical assistance, and premises. At this stage, there is a risk of getting stuck. That is, we now only focus on finding resources. We are afraid that resources won't be enough. We try not to inform people about our existence so that there aren't too many patients because our resources are enough for only a certain number. And we might end up quarrelling among ourselves because there are as many resources as there are, and there are more people. We might compete with other similar organisations, or even, for example, with children's hospitals or palliative societies, fighting for funding. But you can't skip this step because every organisation needs to learn how to obtain the resources.
  3. If you manage to successfully pass the first two thresholds, then the awareness of values begins. These values are built on what we can share with others, not just physically, in terms of material things, but also emotionally. We talk about how important life is, how important each child is, how by helping others, you yourself become better. The risk is that by focusing on values, you might forget about resources.
  4. The next stage is information. It is important to create some informational content and share it, to let people know about us. In Liepaja, even municipal deputies could not pronounce “palliative care.” But over these years, we have created a lot of content that allows people to learn a lot about what we do. Information is already spreading from person to person on its own. We have published many brochures, frequently appeared on television, radio, and in newspapers.
  5. The next stage is status, when you need to exert influence on the entire field of activity. This is the stage of gaining recognition from political structures and decision-makers. At this stage, we managed to create a centre. Ilze then became the Person of the Year in Liepaja, receiving many different certificates from ministries. Status does not provide any financial resources, but if you reach this stage, it's already a guarantee that you will be able to maintain the organisation, sustain the work, and obtain the financial resources necessary for development.
  6. And the final stage is commitment. Rarely do individuals reach this stage; it’s more common for organisations. This stage is when you start influencing the entire world. It is important for an organisation to be able to change people's minds. When we started working, there were attitudes in society like “we don't have sick people, we don't have disabled people.” But then it turned out that we do have them, quite a few actually. Another attitude was “your family has this child because you sinned, this is karma.” No, on the contrary, such children exist to make all of us better. And it is important to convey this to everyone. If the organisation succeeds in shifting such attitudes, it is very likely that this organisation will stay and really be able to exert a beneficial influence on the world. I believe that through palliative care, society will change so much that people will understand that if a child's birth is a value, then death—whether of a child or an adult—is equally a value. These last, sometimes short, sometimes not so short, months need to be made as comfortable as possible, allowing a child to reach their purpose and change the world.
When a diagnosis leading to palliative care is found, in addition to the patient, their family appears in our lives. The family has to go through many stages, accepting their own vulnerability. But gradually, the family also becomes an expert, integrates into the agenda, and such a family becomes a resource. Parents begin to bond with each other, and often helping each other is decisive, especially when making difficult decisions. Gradually, in communication with the family, the focus shifts from “cure the child, perform a miracle” to “how can I reduce the child's suffering, how can I make their life happy?”


Family Support System / Webinar PACED
Our team consists of many people: a doctor, a nurse, a social worker, a psychologist, and chaplains. We currently supervise just over 140 families, but this number is constantly changing. Usually, there are 20-30 active families. Many families need consultation, help or support maybe once or twice a year. But it is equally important for them to know that if something happens, they can come to us. If we count medical consultations with doctors and nurses, it's from 2,000 to 2,500 per month. The psychologist has from 7 to 77 consultations per month.

It's important that our performance is of high quality. Firstly, individual relationships with the family should be formed, so that the family trusts the team. Secondly, the family should feel respected, accepted, and supported. Thirdly, the family should have the opportunity to express their emotions and experiences. Very often, this is what is lacking when the team consists only of medical professionals.

It is necessary to remember the perspective from the child's point of view. The child needs to be given the opportunity, if they are ready, to discuss issues related to death. Especially considering that most often the child passively receives care and rarely has the chance to express themselves. The palliative team helps parents build such relationships with the child, that they are more willing to open up.

We shall not forget to take care of the staff, so that people don't forget about burnout prevention, as well as about rest, communication, and other ways to stay resourceful.
It's important to discuss existential questions. Searching for answers about the meaning of life and the meaning of their work really helps with burnout. According to research, those workers who think about such things and discuss them, are less likely to suffer from work-related depression and burnout.

We invest a lot of effort into educating our team members. We regularly hold conferences, and we organise a Summer School every year, which specialists from all over Latvia attend. Sometimes we even have international events. Every month we have a journal club, and I also invite everyone to join us. We have courses for families, practical sessions once a month, where family members can practise changing a gastrostomy or tracheostomy on a doll, for example. There are informational seminars organised by social workers and chaplains. There are integration camps, support groups for parents. Once a year, we hold a memorial evening for children who have passed away.
"Child's birth is a value, then death—whether of a child or an adult—is equally a value".

Gundega Blizneca
Gundega Blizneca / Webinar PACED
I will speak about my work as a nurse in the palliative care office in Liepaja.

I'll start with the specifics of paediatric palliative care. Compared to adults, there are fewer oncological patients among children. We currently have only one child with an oncological disease. The number of children who die is small compared to the number of dying adults. Many diseases in children are extremely rare, especially diagnosis specific to paediatrics. Many of these diseases limit a child's lifespan. Finally, the duration of a child's illness usually differs from that of an adult and varies greatly. Palliative care may take only a few days, several months, or even years.
Area of operation / Webinar PACED
We work in the Kurzeme region, this is our region, it's green on the map. In this region, palliative care is provided jointly by specialists from the palliative care office. That's me, along with Dr. Cirule. We have two nurses, both part-time, one doctor, a psychologist, and a psychotherapist, both part-time. We also have two societies in our city: “Dijvanagi” and the Society for Child Palliative Care. There are 277,130 residents in the Kurzeme region. Of these, we have 148 children in palliative care, quite a lot.

What services do we offer?
  • Planned consultations at home with palliative care team specialists for patients living in Liepaja and the Kurzeme region, daily, by prior arrangement over the phone. For example, today we arranged three consultations for tomorrow.
  • Consultations by the palliative care team specialists by phone 24 hours a day, 7 days a week. This is quite interesting because the office works from 8 am to 4 pm, but we consult via phone 24/7.
  • Outpatient consultations by palliative care team specialists in the premises of the Baltic Rehabilitation Center or in the palliative care office at the regional hospital by prior arrangement.
  • Outpatient consultations by a psychologist and psychotherapist, also by prior arrangement.
Children's Palliative Care Unit / Webinar PACED
Here you can see what our children's palliative care office looks like. We try to make it comfortable for children, so they are interested, so the doctor can talk to the parents calmly, while the child has something to occupy themselves with: these are usually quite long conversations. Importantly, we do not perform any medical procedures in the office, so the child is not afraid to enter. If needed, we perform the procedures in the department. The children's department is on the same floor as the office.

On this slide, you see the number of consultations by month; these are data for 2023. Usually, if we see more consultations, it means a new patient has appeared. Such reporting is needed for all the institutions we are connected to: for the hospital, for the government, for the grantors.
Число консультация / Webinar PACED
What is the role of the nurse in palliative care?
When we started working, we had to do a lot and figure things out ourselves, and overall—we needed to understand how we would work. My main role as a nurse is to provide care.

The most important thing for me was to gain practice with medical equipment: oxygen machines, feeding machines, suction devices, and so on. This equipment also needs to be found and ordered, and it should be convenient for a patient. I remember a mother coming to me with a small child in a stroller, with a huge suction device on her shoulder. And I look at this mother and think, my God, what are we doing? The suction device is heavier than the child! We realised: everything should be small, convenient, so parents can put it all in the stroller or the car. The same goes for oxygen machines. Some need a large, stationary one. Others need one they can walk with. And we try to buy more of those.

I remember when we had to change the gastrostomy for the first patient who came to us from Riga. The doctor said, “Gundega, I will invite the surgeon.” And I replied, “If you invite the surgeon, I won't be able to do it myself. We must learn to do it ourselves.” We found instructions, studied them, and did everything ourselves. And that’s how we learned everything.

Another role of the nurse is to be a teacher. To teach colleagues, to teach parents, to tell school children that we can be different. Last week, children aged 5-6 from kindergarten came to visit our children’s palliative care office. I showed them the doll in the photo, explaining that we are not all the same, that we can get sick, that we may have a tube in our throat, a tube in our stomach, that a person can breathe differently. They looked at me like: “Oh, really?” Frankly, one little boy felt sick when he looked at the doll, but only one. At the beginning of the meeting, the children said that they would never be doctors, they all wanted to be psychologists. But later, when they were leaving the office, one girl said she wanted to be a doctor who not only listens and talks but also does things. And I realised that she wanted to be a nurse or a doctor — a person who physically helps a child.

Doll for working with patients / Webinar PACED
When it became clear that everything would be official, that we would have an office, a team, social workers, and chaplains, we created a project on home care training. Social workers, medical staff, and chaplains taught there. We decided that absolutely all palliative care workers should know how to care for a sick child at home.

The next project was training people with disabilities in enteral feeding. We trained people who work in nursing homes, children's homes, our colleagues, and even the patients' family members. We implemented this project together with the children’s clinical hospital. We even made a training film. As a result, now, if we have a patient, for example, in a children's home, we no longer need to go there to change a gastrostomy or tracheostomy, or specially explain something, since the workers there have already been trained and do everything themselves. This project really worked well.

Another very important role of the nurse is implementing collaboration. Anyone who has ever worked in palliative care understands that one person is not a player. The team is the main thing, and we must know how to cooperate. We are always in communication, making calls. Almost every third day, one of us has questions for a colleague.

Charitable organisations help us a lot. None of the equipment was purchased by the state. The funding allocated to the office is only for the premises, consultations, and utilities. So, we purchase all the equipment with the help of sponsors. Sometimes it’s donated.

Palliative care is work where you must constantly learn. This is especially true for paediatric palliative care. There are such diagnoses that you see a child, hear their diagnosis, and go to read scientific publications. Because there are many rare diseases, it’s impossible to know everything.

Janis Balodis
Janis Balodis / Webinar PACED
My topic today is the role of medical professionals in the interdisciplinary team working with families of terminally ill children.
We have heard a lot about the word “team”. A team is the most important component of palliative care. There is a multidisciplinary team in a hospital setting, and there is an interdisciplinary team, without which it is impossible to provide palliative care, to help seriously ill children and their families.
Why is an interdisciplinary team a great value?
  • The team works together on goals focused on the patient’s well-being. The most important thing is the patient, the child, and their family.
  • A person-centred approach, taking into account the individual situation. Even in a situation where the illness is completely incurable, we look for realistic goals and work towards them together. Parents going through this difficult journey need some stability, some certainty. They need to adjust to the new reality.
  • Communication within the interdisciplinary team. I want to emphasise that the interdisciplinary team is decentralised. We know that in a multidisciplinary team there is a hierarchy, and this is necessary because there has to be someone who takes the main responsibility—this is the doctor who is responsible for the child’s life. But in an interdisciplinary palliative care team, it is necessary for everyone to play their separate role, and it takes a lot of skill to stay in tune with colleagues, so that tasks and any other information flow freely from one team member to another.
  • In an interdisciplinary environment, the team implements new ideas, alternative recommendations, not just conventional knowledge, but something someone gained, for example, during some training, and shares with the rest.
  • Teamwork is the philosophy of palliative care. Some people think that an interdisciplinary team is just when you manage to get a doctor, a nurse, a psychologist, a social worker, a chaplain, and maybe some volunteers together. And now each of them will do their job, and you don’t have to worry about anything. This is not true. This is a philosophy, an idea on which the interdisciplinary palliative care team is based. The life of each child who comes under our care, as well as their family, has changed radically. We need to find a foundation on which people can build new dreams to replace those that were shattered when they heard the bad news. And in an interdisciplinary team, all members are involved in this work, interacting with each other. We share information with each other within the team — this is very important and necessary. This way, we can quickly respond to the patient’s needs and help.
  • You can read more points on the slide, they are all important. But I don’t have much time, so I’ll move on.
Support for the Multidisciplinary Team / Webinar PACED
How to manage an interdisciplinary team?
You see a scheme of an interdisciplinary team. The main idea is that the whole team, all these people are on the same level of responsibility. Of course, the centre is the doctor. The doctor accepts the child, the doctor passes on further information that there is such a child, these will be these symptoms, this illness, this family. The doctor outlines the tasks, sets the direction for how everyone will work. But the doctor also understands that together with medical issues and social ones it is necessary to address psychological and spiritual. Social issues need to be resolved soon because otherwise, a family cannot function. It often happens that one parent can no longer work, so how to support the family if one breadwinner is lost? This is just one example. And then there may be a spiritual need. Usually, parents say, “I want a chaplain, I want to baptise my child.” This is already our area of responsibility.
Multidisciplinary Team Working Model / Webinar PACED
I think the most important thing for a team is balance. I outlined on the slide the qualities of an interdisciplinary team that need to be maintained:
  • unity;
  • realistic goals;
  • openness;
  • democracy;
  • respect;
  • subordination;
  • and others.
Egoism, love of power, and careerism have a very negative impact on the team. It is important to take care of the internal rituals of the team, some traditions: to celebrate some holidays together, for example. So that people feel part of a community.
Multidisciplinary Team / Webinar PACED

Varis Bogdanovs
Varis Bogdanovs / Webinar PACED
Today, we will discuss the role of spirituality in paediatric palliative care. For me, like for the Society for Child Palliative Care, this is the 25th anniversary of palliative care, because 25 years ago I started working in the palliative care department for adults. And for the last six years, I have been working with children.
The first big question is: what is spirituality? Of course, each person interprets spirituality in their own way, and this is very important. Over a lifetime, this interpretation may change, develop, or deform after significant life upheavals. Every person has a personal approach to spirituality.

Spirituality is also based on worldview, vision, and value systems. The value system is an especially important aspect.

Spirituality or worldview deals with beliefs and convictions. For example, there is a movement called Jehovah’s Witnesses, which forbids blood transfusions even in life-threatening situations. This is the belief and conviction of this movement, this is their values, their sanctity. We might shrug and think, where did they get this? But this won’t change their views, they will insist on their beliefs, and we will have to find another solution or accept the inevitable.

Spirituality or worldview involves ideas — individual dogmas and sacred things. The very word “dogma” can scare us, but in fact, we have as many dogmas as fleas in a barnyard. A dogma is a principle established by authority, accepted as an unquestionable truth. For example, our parents constantly instilled different norms and values by their example, as a result, we have many inviolable views and habits: some useful, some not, but they stay with us throughout our lives. They can develop, but they only change drastically when confronted with major life challenges or directly — in which case it is possible to discard some unnecessary dogmas.

Spirituality also involves interest in fundamental existential questions, often seen as a search for the meaning of life.

Every person believes in something. Many people have a common understanding of faith and shared values.

Goals of Palliative Care / Webinar PACED
A person is an indivisible unit in all life situations. It seems simple, and we all understand this, but it turns out — not all, and not always. A person can never be partially present in any part of their “self.” Even when we ride a bus and, for example, dream of a vacation—if the bus hits a bump, the bus will jump, we will jump, and our fantasy about the vacation will jump with us. There is no process that affects one part of the body but not the entire person. In any process, the whole person is involved — body, soul, and spirit. We all know only one process where a person “literally” divides dying. Life leaves the person, and the body rapidly begins to decompose. But as long as we are alive, we are an indivisible unit in all life situations.

Taking painkillers is a relatively simple process, but we all know how many problems it can cause. What could be simpler? You just give a painkiller, and the person gets relief. But at the same time, how many questions arise from this process. Won’t the child become addicted to the medicine ? Won’t it harm the child’s liver? And these questions arise not only for the parents of children with a distant prognosis but even if it’s a matter of months or even weeks. Behind such questions, a lot hides: fear, guilt, even shame. Parents are afraid to tell other relatives that they agreed to give the child strong painkillers. They feel like they failed to resist, like they gave in under the pressure of doctors. Of course, they are driven by misunderstanding and false stereotypes. Often, even a long explanatory conversation with a doctor doesn’t help. And it’s not about the painkillers themselves. It’s just that in the minds of many people, such medicines are often a harbinger of death. And we see once again how values, dogmas, beliefs, and fears come into play when making decisions.

When a person experiences pain, it’s no longer just a medical problem. It’s a psychological, social, and spiritual problem. The essence of palliative care is holistic care. Previous speakers have emphasised this. For ensuring the best possible quality of life for the child and their family, cooperation within the palliative care team is especially important. It’s easy to prescribe medication, but how difficult it is to ensure that the family systematically gives the child painkillers at the prescribed time and dosage!

In such life changing situations, parents’ perception of the world changes. One mother told me after her child died that all that was left in her was emptiness. Of course, while the child was alive, they absorbed all the attention; she didn’t think about anything else. Then the child died, and with them, her entire life died. And she said that nothing remained, only emptiness. I asked her what was there before the child was born? She said, that was another time, other values, that it doesn’t concern her anymore, it’s all just not important. Then I told her that she needed to build a new life based on the values she acquired on this new and difficult path. She needed to think, “what is important now?” And that is the work of the chaplain. Not only the chaplain, but also other palliative care specialists are involved. This is difficult, but it brings incredible results if we all work together, as a team.
"There is no process that affects one part of the body but not the entire person".

Anda Jansone (on behalf of Ilze Durneva)
Anda Jansone / Webinar PACED
Dear colleagues, according to the original plan, the final speaker was to be Ilze Durneva, Chairperson of the “Dijvanagi” Society and Head of the Baltic Rehabilitation Center.

I want to say that I am proud of such partners. The Baltic Rehabilitation Center has become the largest in the region and the only one in Latvia that combines social rehabilitation and paediatric palliative care, as well as medical services and rest, that is, respite care. This year, together with the Baltic Center, we outlined a project in which we plan the next steps for developing the palliative care service in the regions: both respite care and hospice services, as well as home palliative care services.
Development of Palliative Care / Webinar PACED
What are our future plans? Of course, we will work on establishing a legal framework. Currently, a statute on adult palliative care is being developed. I hope that children will be included in it. A national strategy and a plan for inter-ministerial cooperation are also needed.

Educational programmes are in development, covering all our audiences—not just doctors, but all specialists involved in the process. We plan to expand international cooperation, exchange experiences and information, hold conferences and congresses, and, of course, create educational programmes and informational materials for the community.

Improving the accessibility of services is a crucial goal. Expanding outpatient services and creating a hospice along with a respite care service—this I have already mentioned. The hospice will likely first appear in Liepaja as a pilot project. It will be a room where a child can stay if the parents still feel insecure and need to spend a couple of days in this hospice room before being discharged home. Or if there is a family afraid or not ready for the child to die at home.

We will assess the available resources, see where we can develop, and what projects and funds to seek. So I hope that by the next anniversary, in five years, we will have new achievements to share with you.

Questions and Answers
Question: Which specific department is responsible for providing patients with home equipment — the Ministry of Healthcare or the Ministry of Welfare? And could you please explain how they are provided: free of charge, for rent, under what conditions? Did we understand correctly from the presentation that the state covers the cost of care and nutrition?

Sofia Tomase: I will probably answer this question. All this — nutrition, disposable materials, and devices—is fully funded by the state, meaning the Ministry of Healthcare. Devices are provided to patients at home. This year, we have a new provision that if a patient needs, for example, a ventilator, two devices are purchased. If it’s life-critical equipment, it is provided in duplicate. The same goes for tracheostomies.
Under what conditions is the equipment provided? As long as the patient needs it. In most cases, it’s permanent, until the end of life. It is provided based on a medical council’s decision, during which doctors prescribe the specific equipment the patient needs at home. Both equipment and consumables are provided to parents in full by the ministry. Of course, there are some specific items, for example, if the patient or parents find it easier with a different type of catheter or syringe than what is in the central purchases, they can buy them on their own. If we don’t have something, there are children’s aid funds. Sometimes we can ask them to purchase some rare, specific device.

Question: Anda, this question is for you. During your presentation, you mentioned that the Ministry of Healthcare did not initially take on the responsibility of providing patients with enteral nutrition, covering transportation costs. How did you manage to get this included in the legislation? How did you manage to negotiate for the state to take on these costs?

Anda Jansone: In short, it’s a long-term job. Simply asking doesn’t work. It takes a lot of work: meetings, letters. It took us 10 years to negotiate enteral nutrition. We started working on home ventilators in 2008, and it all came together only in recent years. It’s painstaking and patient work: negotiations with government representatives, officials. It’s bureaucracy. Nothing else. That’s why we need funds, non-governmental organisations, as Gundega said. While all this is being done, you can turn to an NGO, ask them to purchase what’s needed. There, help comes much faster. Through the state, through lawmaking — it’s a long road.

Question: Someone mentioned in the presentation that telemedicine support started back in 2015. I was amazed because it was so long before COVID-19 when such an opportunity became available everywhere. But I think we all know that there are opponents of this method of working with patients. Indeed, there are risks. I wanted to ask those specialists who practise such care — what are the limitations by diagnosis, by condition; in what cases is it acceptable, and when is it not, and a patient visit is urgently needed, or not urgently, but only face-to-face meetings are possible?

Yulia Cirule-Galuza: I can speak about our region. We didn’t start so early. In 2015, only the Riga team practised telemedicine. We had the technical capability later. And this was “the merit of the deficiency.” Because if I’m the only one in the Kurzeme region, I can’t get to everyone. And as soon as we learned how to use Zoom, video calls, we started explaining to parents what and how to do via online calls.
Our psychologists also sometimes work remotely. Some parents are against it, some parents, on the contrary, are very happy about it. On the one hand, the pandemic was very scary and difficult; on the other hand, it allowed us to do many things that we prohibited before.

Anda Jansone: I wanted to add that during COVID-19, our chaplain colleagues started organising parent support groups via Zoom. And it showed good results.
And secondly, from my experience, it’s good if we can alternate remote online consultations with home visits. This fits well and smoothly into the palliative care process.

Question: We have a question for Irina — to tell us a bit about how you came to palliative care. And also, how do you find approaches to parents who clearly need a psychologist’s help but are not ready to accept it?

Irina Bisiniece: My path to palliative care started when I began studying to become an existential psychotherapist, and I needed practice as a psychologist. The children’s clinical hospital was one of the places where I could get this practice, a colleague suggested it to me. My first reaction was fear. I was scared that it would be very hard. Sick children in various states—how would I cope with this? When I was a teenager, I visited an orphanage, where there were children in need of palliative care. And at that time, I felt physically ill, and I was afraid of some similar reaction. But no, it was completely different. It was rather difficult to get involved in this process: new terms, all these stomas, gastrostomies, tracheostomies, pulse oximeters. All this technical stuff was hard because I have little relation to medicine. And in general, you need to “immerse” yourself in this. That is, for one or two years, you need to be constantly involved, to go on home visits with nurses, see how the work is done, absorb the spirit of this care, and then it becomes much easier to help.
As for parents who do not want to start working, you can’t force them. You can be there, inform them of your presence, and wait. Patience is necessary. It’s also not necessary to start with deep issues. Initially, it’s about practical matters. Sometimes the first acquaintance is you coming to sign an agreement or delivering some device, just passing by. This is also a way to make contact. Sometimes you’re lucky and manage to enter into long-term relationships with very difficult, rejecting patients or parents. But it’s always a challenge, and it doesn’t always work out. This also fosters an understanding of your own limitations.


Ira Chernozhukova (Moderator), Question:
Thank you very much, Irina. I have another question from me, which will probably be more interesting to those specialists working in non-profit organisations. First, I understand and agree that comprehensive palliative care is impossible without the cooperation of state and non-state organisations. Both are highly professional in their field, but non-state, non-profit charitable organisations and foundations are usually more flexible, more responsive. At the same time, state organisations are usually more stable, with more resources and opportunities. I would like to clarify, Anda, probably with you: what other fundraising methods, besides state funding, does your Society for Child Palliative Care use? For example, donations from individuals?

Anda Jansone: We organise charity events, very different ones: exhibitions or concerts at Christmas, or on Mother’s Day, for example. We have grantors who have been supporting us for years. People have the opportunity to help us by making donations through online banking. Very varied. We try to speak more often on who we are, what we do, and why we do it.

Ira Chernozhukova (Moderator): If this is open information and you can share it, please, tell us what percentage of funding comes from donations, that is, non-state funding?

Anda Jansone: Very little, maybe 10%. This is a small share because, if we look at the overall budget, the most expensive thing is employee salaries, and that is covered by the state.

Conclusion
Ira Chernozhukova (Moderator): I want to thank our wonderful speakers, the PACED team, and translators Anna Akmaeva and Ksenia Ruzova. I would also like to express special thanks to Dr. Yulia Cirule-Galuza, who provided tremendous assistance in organising today’s meeting and introduced us to such brilliant professionals from Latvia.


Yulia Cirule-Galuza: Thank you for this event. It would be great to make palliative care education more accessible and understandable to those working in medicine, social work, spiritual spheres, but who are not palliative care professionals, because it is very important for everyone in society who encounters families with a palliative child to have some general understanding. It was valuable to listen to each other; I also learned things from my colleagues that I didn’t know, such as the history of palliative care development. It is also useful for each of us to look back and assess what we have done, to survey the path we have travelled. This gives perspective, and that is also very useful.

Ira Chernozhukova (Moderator): Thank you very much. Colleagues, I once again congratulate you on such a wonderful date — quarter of a century — and wish you many more years of personal and professional growth. May paediatric palliative care in Latvia continue to develop and foster the growth of colleagues from other countries, so there is always something to share. Thank you very much.