PACED Team: Julia, you have worked in palliative care for many years. Can you tell us how you came into this field?

Julia: I first encountered palliative care as the mother of a child with leukaemia. My child passed away when he was 6 years old. This was in 2001 when palliative care was only just emerging here. I met Dr. Anda Jansone and Chaplain Aina Briede as a recipient of palliative care. Before then, I didn’t even know palliative care existed. From that moment, I started learning more and more about it.

A colleague introduced me to Ilze Durneva who also had a palliative child, only with neurological problems, and we became friends. She started a support group for other parents and siblings of ill children, and we became close. Once, it came to our mind that what was needed was a kind of “translation bureau.”

Reports were still handwritten in those days. Parents often couldn’t decipher the writing, and even if they could, they didn’t understand what was meant.

For the first two years, we visited homes in our spare time, talked with parents, provided some support and social assistance, and sometimes held lectures for parents. This was considered a volunteer-based support group.

About 4-5 years later, we began working to establish an in-hospital palliative service. Liepaja is a small town about 200 km away from Riga. We had situations where children with cancer or other serious illnesses needed home care, but we couldn’t provide it because medical assistance was only available in hospitals then.

Initially, it was a semi-official activity with minimal state funding. We joked that they gave us a “gasoline allowance” so we could at least do something beyond funding it ourselves. Even now, we have to fight for funding.

By 2017, we had gradually become an official paediatric palliative care team—the second one after Riga. My friend established a non-profit organisation Dižvanagi, which now provides most psychosocial rehabilitation. We created a format in which the medical and non-medical aspects work together, even though they are officially in different locations.

Virtual connections allow us to achieve a lot, and getting somewhere by car is only a 30-minute drive, so we don’t feel constrained by having everything in one place. We work where needed: most often in children’s homes. We also support groups. We work in various formats, choosing the most effective in each case, allowing us to continue doing what we do.

Even in 2011, when our team was just forming, we decided our primary focus would be patient care. We do what the patients need. Figuring out how to formalise it comes later.

Almost everyone who trained with us is still on the team. One colleague moved to Riga but now works as a nurse in a perinatal centre, which often involves palliative care; another left for family reasons.

PACED Team: What was your profession before you entered palliative care?

Julia: I was a paediatrician. I would call it social paediatrics, though this speciality doesn’t officially exist. Even before I entered medical school, I worked in a children’s home. During my studies, I worked extensively with children with developmental disorders. As a paediatrician, I participated in a working group of the Paediatric Association dealing with diseases that worsen neurological conditions. We tried to understand what was happening with such children and how to help them. I also worked a lot with American families who adopted children from us. Once considered almost hopeless, some children are now living fulfilled lives abroad.

PACED Team: Looking back, how would you assess the development of palliative care in your country over the last 15 years?

Julia: I’d say that, like any progress, it’s a spiral. The good news is that our spiral is moving upward, not downward.

When we started, most government representatives who helped us couldn’t even pronounce “palliative care,” let alone fully understand it. Now it’s a common topic with extensive literature, guidelines, and government documents.

Most of the legitimacy and foundation we work on have been built by palliative care leaders in Riga. Oddly enough, 200 km from the capital feels like a lot. We rarely get the chance to attend major meetings and conferences in person. We participate virtually and submit proposals, but to have a real impact, you need to be in Riga.

Palliative care in Latvia started with adult support. The Association gave lectures and issued guidelines. Thanks to colleagues in Riga, public attitudes towards palliative care and pain management have changed drastically. However, the availability of palliative care was stagnant for a long time.

During this period, pediatric palliative care developed. In theory, it was thought that child support teams were needed in each region. But practically, only our team in Liepaja and, for a time, the Kurzeme region was actively working. Mobile teams did travel to distant areas like Daugavpils, Pļaviņas, or Vidzeme when needed, but this can’t be considered regular, accessible care.

Teams were formed and trained, but they struggled to implement what they’d learned. We succeeded thanks to pure enthusiasm, and our hospital management provided great support. Without them, perhaps we wouldn’t have endured either.

PACED Team: Does the support continue today?

Julia: Yes, it does. A young and proactive palliative care leader emerged in Latvia about five years ago - Kristians Davis. He was studying to become a doctor but didn’t complete his residency. His father passed away from a serious illness when Kristians was a teenager, and this experience led him to devote himself entirely to establishing accessible adult palliative care.

He started by travelling around the Kurzeme region, meeting everyone working in this field, and began organising a palliative and social care centre for adults Rūre. It was a pilot project, but he proved its effectiveness, even though I know how difficult it is to demonstrate the return on investment in a project's early stages.

Thanks to Kristians, as of early 2024, mobile palliative care teams for adults are operating across Latvia. Sometimes, when we have severely ill children in remote areas, we collaborate with these teams. The problem is that we officially have funding only for chaplains and social workers. Medical care is funded through the palliative care unit in the hospital, which, in theory, operates from 8 am to 4 pm. But we’ve been going out at night and on weekends for years. Of course, it's exhausting if you need to go out three nights a week. So, when a child in the final stage of life appears, we often rely on collaboration with adult palliative care.

We need a strategic approach to unify all the parts into one cohesive system before presenting it to the ministry.

Unfortunately, funding is particularly challenging this year due to the geopolitical situation. Much of the budget is directed to the Ministry of Defense, leaving little for healthcare. There’s not enough even for emergency care in hospitals, let alone for us, who receive only what’s left.

Another factor holding us back is competition. Palliative care is placed in a competitive environment: a project competition is announced whenever a grant appears. If you want to win a grant, you can’t share your developments with others because, if you do, others might win, leaving your team without funding.

This would bring together everyone working in palliative care into one organisation. We have an organisation for medical professionals—the Palliative Care Association—but it’s for doctors only, not even nurses. There’s also the Physiotherapists

Association, where some specialists deal with seriously ill patients, and we have the Chaplains Association, which unites all hospital chaplains, not only those working in palliative care.

So, I decided we needed the Palliative Care Alliance to discuss emerging issues, draft documents, and go to the ministry as a unified force.

Right now, it’s just a concept on paper, but all the colleagues I’ve spoken with agree we need it. There’s a lot of work to be done, and I don’t have time to accelerate the process.

PACED Team: Julia, it seems that uniting people is your superpower. Can you tell us about your experience with the journal club? Where did the idea come from?

Julia: The idea came to me after one of our Palliative Care Summer Schools, which we’ve been holding for about five years. Initially, these schools were just for our team, but now they’ve reached an international level—participants from other countries. Although we conduct the sessions only in Latvian, foreigners must use translators. But participation in the Palliative Care Summer School is now considered an honour. We organise these events practically without funding; they are completely nonprofit.

While receiving medical education (applicable to other specialities as well), you’re forced to write summaries, reports, etc., while studying. But once you finish, you breathe a sigh of relief and forget about it. Yet research continues! And we miss a lot of exciting information!

I asked a lecturer at the University of Latvia how to encourage professionals to continue their education, find time to read scientific journals and stay updated on industry developments. She said that discipline and setting aside a specific time each month—at least an hour—are needed to engage with science, no matter what.

So, I decided we could allocate one hour a month. We now have one hour a month in Latvian and another hour in Russian or English—whatever works best for people. It’s an international club. We discuss two articles at each meeting. Attendance varies a lot; sometimes there are 20 people, sometimes just two. I try to choose studies that interest me.

Starting this year, we began reviewing complex clinical cases. I try to ensure that these are not only medical studies. For example, one session might cover paediatric palliative care, another a medical case, a third might focus on a social worker's perspective, and a fourth on the challenges of spiritual support. This way, different members of the palliative care team can participate.

In doing so, I achieve three goals: first, it keeps me engaged and reading scientific literature; second, I get to study what my colleagues suggest; and third, I get to see colleagues I otherwise wouldn’t. My team members also try to support me by participating.

In November, one of my colleagues prepared a review of several articles on the post-treatment effects of oncology that need consideration after a patient’s recovery. Another colleague from Riga prepared an analysis of an article on communication assessment with a non-verbal child—how it can be done and the global trends. As for the clinical case we had planned to discuss—unfortunately, shortly before the meeting, I was informed that the child had passed away, so we had to choose another case.

PACED Team: How do you handle your primary work and still find the energy to think of ways to unite people? Where do you see your resources, and what gives you a sense of purpose?

Julia: First, if a person is on their destined path, they’ll find time and energy for everything. Second, working with children brings a lot of satisfaction—whether they come to me for consultations or I make home visits.

I work in palliative care and as a paediatrician in a clinic. Sometimes, parents of palliative children bring in their other children, and I can see the stress it causes them—they experience heightened anxiety until the healthy child surpasses the age at which their other child’s illness was diagnosed. They constantly need reassurance, and I help them with that, which is inspiring.

I also work in rehabilitation. We use the Floortime method, which promotes communication through play. Watching children develop brings immense satisfaction.
Here are a couple of examples.

I have a 16-year-old patient with severe epilepsy and spine issues. I’ve known her since she was three and greatly enjoy watching her learn and overcome challenges. Her mother shares stories about how her daughter tries to speak or help around the house, despite her health issues.

Another patient of mine is a visually impaired girl with autism, epilepsy, and aggression. I arranged for a visit to a farm with ponies. We went there, touched, and explored everything, and she got to ride a horse. She didn’t try to harm it; instead, she stroked it. She even spoke that day, which is not common for her. She felt happy, and her mother, who usually worries a lot, smiled and took pictures.

It’s essential to find new approaches because we have older children who have been in rehabilitation for many years. They’re used to coming, sitting down, and doing tasks. I call them “over-rehabilitated.”

PACED Team: Julia, what would you like to achieve in palliative care in Latvia?

Julia: I have two specific dreams. First, I want to create a large portal that will gather all information about palliative care in Latvia and be intuitively user-friendly.

There will be an AI feature that helps people find answers to their questions: How do I act? Where can I get help? Whom can I call, and when? Where is the nearest place to find help? Or, if you’re a palliative care specialist, you can post about any supplies you need, and others can share resources if they have a surplus. It can also host educational materials and lectures and organise the data we already have. There will be a community section where people can support each other. This way, mutual aid can come into play when funding is insufficient.

I even have ideas on where to look for funding. I think it’s worth approaching producers of painkillers, bandages, and so on, with whom we already collaborate—they could become our partners. I believe it would be beneficial for them, too: They could support our website, and we could help them distribute their products. It’s feasible, but it requires time and someone skilled in IT and website promotion. For me, it’s technically challenging.

Each patient would have a separate file that couldn’t be lost or accidentally deleted.

Currently, we face an issue: when a patient moves, we don’t know anything about them because they received care in a different region. If the patient doesn’t have printed documents, we’re left guessing. For instance, a patient from another region comes to us, and we don’t know what they’re being fed or the type of gastrostomy they have. We end up guessing, which can lead to mistakes. A database would also help with tracking, so we could know how many children with gastrostomies or on tube feeding are currently in Latvia. It would make ordering supplies easier and aid collaboration with ministries, including the Ministry of Education.

If we had an electronic system, we could indicate educational challenges in advance and plan accordingly. We’d know how many children in a region would likely need home or integrated learning rather than standard classes at age 7. Schools wouldn’t be shocked, and we could address these issues six months before the school year instead of at the last moment.

PACED Team: What recommendations would you give young and beginning palliative care specialists? And are there enough such specialists?

Julia: There’s always a shortage of palliative care specialists, partly due to the lack of job openings. Even if there were enough specialists, there would often be no funding to pay them and no positions.

At first glance, attracting experienced individuals with life experience seems logical. But in palliative care, medicine is only part of the work. Listening, understanding, and communication skills are crucial and require constant development.

We must attract people who value an individualised approach, not just routine work. When residents come to me, I try to spark their interest in palliative care. Future family doctors need to be familiar with this field, as they’ll also provide primary palliative care.

Each time, you learn new things, consult with colleagues who’ve encountered similar cases, and together we develop new ways to help. It’s a true collaboration with colleagues and parents. That’s why it’s always exciting and never routine.

PACED Team: How do you think communication skills can be learned?

Julia: Some people are naturally gifted communicators. But even then, there’s a risk—someone who thinks they have a natural gift for communication might talk a lot but listen little.

I’m still learning communication myself. There are books and guides, but the main thing is personal work—gradual practice and the development of qualities needed to listen, understand, process information, and express yourself clearly.

There are techniques not only in medicine but in any field. Mastering them helps people overcome their fear of public speaking. If you can communicate with a family in crisis, you’ll undoubtedly manage to speak before an audience that’s come to hear you.

I was fortunate to attend two courses in Salzburg: one on maternal and child health and another on pediatric palliative care, which became a solid foundation. I also studied neurolinguistic programming, Ericksonian hypnosis, and similar techniques. Currently, I’m in an online school of psychology and philocosphy studying ancient philosophers. Oddly enough, the thoughts of Socrates and others are still relevant today. It gives a broader view of the world.

I’ve also read a lot about burnout prevention.

We constantly learn to work on the self. It may not be as noticeable as developing new technologies or drugs, but it’s equally refined work. And you need to work with others and, above all, with yourself to help patients effectively.