We Understand That Respite Services and Hospice Rooms Can Be an Alternative to Children’s Hospices

Anda: From my school years, I knew I wanted to dedicate my life to teaching or medicine. In high school, I joined a medical club. It was exciting. I even worked as a nurse’s aide at a regional hospital during the summer. That’s when I got to know a hospital from the inside. So yes, medicine was a conscious choice for me. However, I still wanted to work with children, so I enrolled in the paediatric faculty.Ira: What led you to palliative care?

Anda: More than 25 years ago, when no one knew anything about palliative care in Latvia, the head of the paediatrics department, Prof. D. Gardovska, told me that there was such a medical field in the United States and suggested that I explore it and think about how to develop this field in Latvia.

After the training, I asked myself: Does our country need paediatric palliative care? If it does, in what form do we begin to develop it? How do we design a plan for paediatric palliative care in Latvia?

I had other career opportunities, but I’ve always liked challenges and creating something from scratch. This was precisely the work for me; I am confident about it as the past 25 years have shown that the model we developed and adapted for Latvia works. At first, we aimed to establish a palliative care department in a hospital, but after we started working with the first families — as volunteers at the time — I quickly realised that our choice should be home-based care. The thing is, more than 90% of families prefer this type of care; they don’t want to stay in a hospital but instead want their child to be at home.

Over the past 25 years, we have trained three teams, mentored young specialists, developed informational and educational materials, and created educational and documentary films. I am proud of our work.

Ira: Please share what you are working on now.

Anda: For the past six years, I have led Latvia’s psychosocial sphere of paediatric palliative care. ICPCN has recognised me as a specialist expert in paediatric palliative care. This year, I was invited to join the working group developing the latest edition of the EAPC Atlas of Palliative Care in Europe. I will also undergo brief training there and gain the status of an international expert, which brings me great joy.

Ira: Starting from scratch is very impressive. What advice would you give to young specialists and palliative care enthusiasts who want to do the same for their country, city, or region?

Anda: First and foremost, we need people who are passionate about the idea. Secondly, they must undergo a training course, even if it’s not very deep, to help them navigate the field of palliative care. Young specialists need to understand the philosophy and fundamental principles of palliative care and how it differs from other areas of medicine. The interdisciplinary team is at the heart of palliative care, bringing together doctors, nurses, psychologists, social workers, and chaplains. Palliative care teams must be built step by step while allowing team members to develop their theoretical knowledge and practical skills.

Newly formed teams should begin by providing services to a few patients. This allows for better control over the workflow, gradual accumulation of experience and knowledge, and the ability to assess and improve the quality of processes.

The Children’s Palliative Care Society is open to collaboration. If you need assistance, feel free to reach out to us. We have provided consultations to colleagues in Lithuania and Estonia. In Georgia, we trained professionals in paediatric palliative care.

Ira: What new developments have occurred in palliative care in Latvia recently?

Anda: If something happens to a person at 22 and they need palliative care, they receive adult palliative care. Until recently, as paediatric palliative care specialists, we only worked with children up to 18.

So, if we have been caring for a patient since childhood, that patient stays in paediatric palliative care as a young adult until the age of 24.

There is a myth that children should be treated like small adults. This is entirely incorrect. Children have many distinctive features, including their developmental level, medical, physiological, and psychological status. Even in paediatrics, there are gradations.

Incidentally, I have an interesting observation. Specialists working with adult palliative care patients rarely, and with great difficulty, transition into paediatric palliative care. But those who have worked with children can, without a doubt, work with adults.

Now, we feel calmer when transitioning patients to adult palliative care. Of course, this transition doesn’t always go smoothly: the teams are new and still gaining experience. But I’m confident it will become easier over time.

Ira: How is palliative care structured in Latvia now?

Anda: Latvia has made significant progress in palliative care, but much remains to be done to integrate it into the healthcare system fully. Anyone can access primary palliative care from their family doctor. Outpatient consultations with specialists such as oncologists, neurologists, and others are also available. There are palliative care departments in five regional hospitals, and Riga hosts two: one at the Riga East Clinical University Hospital and another at the Pauls Stradiņš Clinical University Hospital. Starting in January 2024, mobile palliative care teams provide home-care for adults nationwide.

The paediatric palliative care model involves home-based care provided by an interdisciplinary team consisting of a doctor, nurse, social worker, psychologist, and chaplain. In Latvia, home palliative care for children is delivered by the Palliative Care Service of the Children’s Clinical University Hospital and the palliative care team of the Liepāja Regional Hospital in collaboration with the Children’s Palliative Care Society, which provides for social workers and chaplains for interdisciplinary paediatric palliative teams. Such teams operate 24/7, offering home visits, telephone consultations, online support, and outpatient care. Inpatient care is provided in specialised hospital departments, and every child has a family doctor.

A children’s hospice is still essential for us. In 2023/2024, together with the DžīvanagiSociety, we developed the project Comprehensive Implementation of Paediatric Palliative Care and Hospice Services in Outpatient Healthcare in Latvia. As part of this project, we have planned the creation of several regional paediatric palliative care teams, respite care services, and hospice wards for children in need of palliative care.

The State Health Service has given our project a very high evaluation. It has been approved in three stages. We are actively seeking funding to bring this initiative to life. Given the current economic situation, building a large-scale hospice like those in the UK or the USA is not feasible, making these services an excellent alternative.

Ira: You are developing various formats of palliative care, all of which involve spiritual support, which is very advanced in Latvia. Could you explain the role chaplains play in this?

Anda: Our form of spiritual support is based on the American method — chaplains provide clinical spiritual care. They can belong to any denomination: Catholic, Orthodox, or other.

It’s important to distinguish between religious and spiritual support.

Such support aims to identify the patient’s values, understand their worldview, assess their spiritual resources, and nurture them. It helps address existential questions such as: Why do I live? Why am I dying? Why is this happening to me?

In some ways, the work of a psychologist and a chaplain overlaps, but only partially. They may start working with the patient on the same issues, but each goes deeper into their speciality. Additionally, chaplains play an invaluable role as a bridge between the patient, their family, and medical personnel. If there is anything the patient or their relatives don’t understand, the chaplain explains it. They are there to help, clarify, and provide spiritual care.

To become a chaplain, one shall graduate from a theological faculty. Our very first team already had a chaplain. We all worked part-time: me as a doctor, a social worker, a nurse, and a chaplain.

Ira: Where do you think a student who wants to become a palliative care specialist in Latvia should start their journey?

Anda: If someone is studying to become a doctor in Latvia, their oncology course will include a few hours dedicated to palliative care. However, this is critically insufficient. Medical students often spend a lot of time working in hospitals — doing internships, practical training, and residency. I recommend starting by working as a nurse or orderly in a palliative care department or with a mobile palliative care team. After completing their higher education in Latvia, they can pursue an 11-month residency in palliative care at the Pauls Stradiņš Clinical University Hospital. This residency is also open to already licensed doctors who wish to obtain a second additional speciality. Upon completing the residency and passing the exams, the doctor qualifies as a palliative care specialist. Some universities offer palliative nursing courses. However, there is no separate speciality called ‘Palliative Care Nurse.’

Ira: What about international courses, programmes, or internships? Are there any you recommend?

Anda: The UK and the US offer many training programmes at different levels. ICPCNalso has an excellent programme for paediatric palliative care. But internships are the most important. Theory is good, but without practice, it’s meaningless. The best way to learn is by participating directly in the process.

Ira: What should be the primary focus when training a palliative care specialist?

Anda: The ability to listen.

It’s also essential to develop critical skills in our field: empathy and the ability to establish communication. ‘One person in the field is not a warrior’—this saying perfectly describes palliative care, which differs from other medical specialities precisely because of its focus on teamwork. People need to be taught this first. Only then should they develop professional skills and accumulate knowledge and experience.

Ira: Which organizations and palliative care experts have the most significant influence on the field, in your opinion?

Anda: It’s hard to name just one organisation. I use a wide range of sources when preparing a report or materials. If I need to understand standards or systematic development, I refer to the US National Health Service. The British paediatric palliative care portal has excellent programmes and information resources for professionals and families. Canadian colleagues also have a helpful website. As for international organisations, the most significant are IAHPC, EAPC, the Worldwide Palliative Care Alliance, the WHO, and other associations.

I always follow Katherine Pettus’s work and read about where she’s been and what events she’s attended. I also follow the work of Julia Downing and Joan Marston.

In the past two years, we’ve collaborated closely with Julie Ling, who heads the European WHO office. I’m interested in Stephen Connor’s work and the resources provided by specialists at the Maruzza Foundation in Italy. I greatly enjoy reading Stefan Friedrichsdorf’s papers on pain.