Editor’s note: During the International Symposium on Pediatric Pain 2023 (ISPP), five pain researchers participated in the PRF-ISPP 2023 Correspondents Program – made possible by generous contributions from Solutions for Kids in Pain (SKIP) and the Centre for Pediatric Pain (CPPR). As we prepare for ISPP 2025 – taking place 17-20 June 2025 in Glasgow, UK – we’re taking a look back at some highlights of ISPP 2023, and some of the people that made them possible.
Hazel M. Gutiérrez – pediatrician and professor of pediatrics at the University of Costa Rica – has continued to work tirelessly in clinical healthcare settings to create awareness about the prevention, assessment, and management of acute and chronic pain in children and young people.
Transcribed here, Gutiérrez speaks with PRF-ISPP Correspondent Lisa-Marie Rau (German Paediatric Pain Centre, Datteln, Germany) about her background, interest in advocacy work, and home-care services in Costa Rica following her plenary lecture at ISPP 2023 in Halifax, Nova Scotia, Canada.
Could you tell our readers a bit about yourself and what you’re doing?
I did my medical [training] in Costa Rica, at the University of Costa Rica. When I finished pediatrics, I got very interested in pediatric palliative care and I found out that there was no pediatrician in my country doing this kind of job. There were a lot of people working with adults, there was even a great team at that time in Costa Rica working with children, but none of them were pediatricians. So, I got interested and I was really looking to learn how to apply that [to] my practice.
I learned a lot from them. They have this wonderful expertise; they have been doing this kind of job for many years. Then, I realized that it was very important for the next generation to have more pediatricians get involved in that area, so I started to look for fellowships around the world.
Fortunately, I found this wonderful two-year fellowship program in pediatric palliative care at the Canuck Place Children’s Hospice in Vancouver. I applied with Dr. Hal Seiden, the medical director at the time, and he accepted me. It was a more hospice-oriented program, and in Costa Rica, we didn’t have a hospice center. Generally, there are different care scenarios for providing pediatric palliative care: at home, in hospice, or the hospital care setting. In Costa Rica, we had the privilege and opportunity to visit our patients in their homes.
Then, I came back to Costa Rica and I have been working with the Pediatric Palliative Care Program and Pain Control Clinic at the National Children’s Hospital in San José. A few years ago, I became the head of the service after the previous one – the founder of the program more than 30 years ago, Lisbeth Quesada Tristán – retired. We have a wonderful, interdisciplinary team there with five physicians, three psychologists, two nurses, one dietician, one physiotherapist, and one respiratory therapist.
I also work with pediatric residents’ fellows, and I am a professor in the Pediatrics Department at the University of Costa Rica. Education for us is very important, [so we can give] future healthcare providers [an idea of] what pediatric palliative care is all about.
You’re really taking care that the voices of the children are heard. What are some challenges connected to that?
I was part of an amazing certificate program in Pediatric Bioethics at the Children’s Mercy Center for Bioethics in Kansas City. What I realized there was [a connection] to one of [the] biggest dilemmas inside my practice, inside my heart, and in all my daily clinical work: when you are working with children, you’re working with these people who are very vulnerable and sometimes their voices are not heard because you only hear the parents’ voices.
What I learned from that course was that you have to respect the child. Being their healthcare advocate, you have to make them a priority. So, let’s say a child says something and the parents are not able to, or don’t want to, listen. You advocate for your patient’s wishes – the patients, the minors, are developing their autonomy, and they are able to participate more as they are getting older.
The patient needs to be listened to because it’s their body. They are experiencing pain; they’re experiencing frustration, and sometimes it’s the desire of the parents to save the child and to do more procedures. We can understand that because they love them, and they want them to have more time. But what palliative care does is prioritize the quality of life, not the length of their life. If the child said, at the end of [their] life, “I don’t want more chemotherapy,” and if, as a clinician, you know that chemotherapy is not going to cure [them], why would you give it to [them]? It doesn’t make sense.
It’ll create more pain, more complications, more secondary effects, and more admission to the hospital instead of being at home with their friends, going to school, and having at least a bit of a normal life. In the meantime, the trajectory of their disease is ongoing. So, this kind of communication is something that all clinicians need to develop and know that the parental consent is not absolute, that you need to advocate for your patients first and then the parents. And usually, after many meetings with the parents and a lot of communication, you are able to do it, but it requires a lot of work.
Can you explain how the healthcare system in Costa Rica works? Who are the children that come to you?
In Costa Rica, we have a wonderful privilege: the Caja Costarricense del Seguro Social (CCSS). It’s an open healthcare system for everybody. Plus, women who are pregnant and every child who lives inside in the country receives free healthcare. Typically, you give an amount of your salary to the government to pay for your healthcare, but for vulnerable populations like pregnant women and children, healthcare is always available despite your family’s ability to pay or not. The healthcare system is a right for every single child, and we can assure the equity of care for all children living in the country. Most of the population that we have in our program are low- or middle-income families.
If you have a child with a complex care condition – we also use the term life-limiting condition – they really require a lot of specialists around. These pediatric specialists are not all available in a private hospital, which middle-high income families might be able to afford. So, even they need to go to the public healthcare system. You treat everyone in the same way. Sometimes, we deal with families with a very low income, social problems, or from otherwise vulnerable populations. For example, immigrants from Nicaragua or citizens from other countries of Latin America come looking for a second opinion. So, we provide these kids with the same care that they would receive if they were Costa Rican children. It’s lovely.
Of course, it’s not perfect. Sometimes you need to wait, maybe the infrastructure is not suitable, maybe not all the treatments are available. But at least in my hospital, I have realized that our children receive a treatment very close to the treatment that they would receive in high-income private hospitals or in developed countries, even though Costa Rica is a developing country. So, the standard of care, I have to say, is wonderful.
Sometimes the family asks me, “Oh, should I go to the private service?” I say, “No, Mom, just keep your child with us here.” I always say to the parents of my patients or my little patients themselves to please save their money for the expenses of your child, the regular expenses. Having a child with a complex care condition is very challenging from an economic point of view for every single family in the world. Even if you are high-income, it’s a lot of care. You need to have all these resources for the needs of that child or even an adult. It’s challenging!
We never say, “No, we are not going to see you.” We don’t do that kind of thing. It’s not like, “Oh, you have this kind of insurance or not, just go away.” Never. Never. So even people who are [homeless] can go to the emergency department and they will receive their treatment. Most of the time, they can’t pay for it, but they will receive proper care.
It’s like a big umbrella. We pay – everyone, every professional in Costa Rica, every person who is working – they pay the same rate. The social security healthcare system is for everyone. So, you pay and sometimes you are not going to request the services, but at some point, you are paying for another person to go there if they really need it.
What’s especially challenging about working in Costa Rica?
If you are an advocate for your patient, you are going to do the things that are needed for them. In lower- and middle-income countries, sometimes there is a lack of resources or limited access to analgesics for children. It’s wonderful how people will do extraordinary things for their patients, even in very challenging and difficult circumstances.
Also, in Costa Rica, when we do home visits, we have just a few highways, and sometimes we have roads that are not as developed as in other countries. This can make just going to the hospital challenging for us. It could even take you five to seven hours just going to the home of the patient. But we do it, and we do it because we know it’s important for the child and their family.
This is a wonderful opportunity that we have in our hospital. We receive the help of a non-government organization, and they pay for the drivers and the cars. For us, it’s wonderful to take our standard of care to that child living in a remote area of the country, despite where they’re living, whether they’re poor or middle-income families, or if they are part of a vulnerable population. The families really feel this trust and this communication that we are behind them in this process, that they are not alone, even if we are in the capital and they are in a rural area in the country, we are there for them.
Lisa-Marie Rau is a PhD candidate at the German Paediatric Pain Centre in Datteln, Germany. You can follow her on Twitter/X – @Lisa_Marie_Rau.