"I returned to Yerevan, went to the Ministry of Health, knocked on the door, and said, 'There is a speciality - palliative care.' No one knew about it."

Interviewed by Ksenia Pominova, PACED.

We met Anush at the Paediatric palliative care department at the Hematology Center, named after Professor R. Yeolyan. Anush shared what life events led her to palliative care, why young professionals under 35 should not work in this field, and what future she dreams of in paediatric palliative care.

Version in Russian you can read by following the link

"They asked, 'Do you work in palliative care?' This was the first time I had heard this term"

Ksenia: Anush, thank you for agreeing to answer a few questions. Tell us how you came to palliative care. Where did your journey begin? What was your education, and where did you work before?

Anush: Thank you, Ksenia. By profession, I'm a paediatrician. I graduated from the paediatric faculty. After our graduation, it closed. Then, I became a paediatric rehabilitologist: I worked with children who had various problems — physical and mental.

Later, I found myself at the Mother Teresa Children's Home in Yerevan, Armenia. I used to volunteer there. There was a case when parents brought a child with severe problems from birth. It was the family's fifth child, a long-awaited boy. The other four were girls. They lived in a village far from Yerevan, with no medical facilities. They could not take care of the sick child. So, the boy ended up in the Mother Teresa Children's Home. The parents did not abandon him; they could not organise the necessary care for their son. That is when I started thinking that perhaps this family was not the only one; there are other families like this.

"Sometimes it's impossible to keep a distance"

Ksenia: You can understand them; they wanted the best for their child.

Anush: Yes. At that time, specialists from Poland who were involved in palliative care came to this children's home and asked me, 'Do you work in palliative care?' It was the first time I heard this term.

Ksenia: Wasn't this even mentioned in medical school?

Anush: No, nothing was mentioned. There was nothing back then. It was 2008. Colleagues invited me to Poland to get acquainted and learn about palliative care so that I could start working on it here. I went to Poland with my daughter, who was ten months old at the time.

For a month, I observed what it was, what they did, and how their mobile service worked. Then I returned to Yerevan, went to the Ministry of Health, knocked on the door, and said, 'There is such a speciality, such a service in many countries.' No one knew about it except one working as a lawyer at the Ministry of Health then. He said he had recently been to a conference where they discussed it.

When palliative care programs were launched in 2010, that lawyer gave my phone number to the staff and said: 'Call this girl, (that is me), she knows about paediatric palliative care.' And this is how our work began
Ksenia: You worked as a paediatrician. How did you decide to make such a transition to palliative care? Was it difficult to take this step?

Anush: As a paediatric rehabilitologist, I worked every day with seriously ill children and their parents. This transition wasn't difficult for me; I continued to work in rehabilitation as well. When I heard from parents that I was helping them (already within the framework of palliative care), it was inspiring.

Ksenia: I understand this is a vast resource that supports you.

Because it is a challenging profession, let us be honest.

What happened next after you 'knocked' on the Ministry's door? How did you end up at the City of Smile—in the paediatric palliative care department at the Hematology Center, where we are now?

Anush: I wanted to work as a palliative care physician but always thought it would be children with non-oncological diseases. When the department opened at the Hematology Hospital, I was the only paediatric palliative care specialist, and I had the certification to do this then. And the hospital invited me. It wasn't easy to work. I was invited here not for the first time: when I finished medical school, they asked me to do a residency here in oncology. I declined at that time. And a few years later, I ended up here again.
Ksenia: Did you decline the first time because it was emotionally difficult?

Anush: Yes.

Ksenia: Because you are "processing" patients' stories through yourself, I know that sometimes doctors can set boundaries between patients and themselves, but this seems more complicated in palliative care.

Anush: It is tough, sometimes impossible, to keep a distance. I cry a lot with my parents, and I think it's normal. The parents feel that I am deeply concerned along with them. But I try to leave everything behind when I leave this department. I closed the door, left here, and just became a paediatrician, a mother of three children, and that's all.

Ksenia: So, you manage to switch like an "on-off" button?

Anush: I try, I work hard with it...

Ksenia: How does your family feel about your work? Do your older children understand what you do? And the younger ones? Do you tell them that you're a doctor?

Anush: The youngest one does not understand; my eldest daughter is 16 years old and she is a future doctor, following in my footsteps. She is currently studying at a college affiliated with the medical university. I don't think she will become a palliative care physician. But she understands. My family greatly supports me because sometimes I can be here until late at night if needed. Or they could call me late because we need doctors on duty at the clinic. Sometimes I come here very late if required. I couldn't have done so much without my family's support.

"Many couldn't work; they realised it wasn't their field"

Ksenia: This is my second time here, and you have an excellent team of empathetic, caring people. Tell me how such a team came together.

Anush: When the department opened, many specialists, nurses, and orderlies wanted to work there because it was new and beautiful. But almost 90 per cent of the specialists have changed since then because many could not work here; they realised it was not their field.

Ksenia: Because it is a heavy topic?

Anush: It is a heavy topic; it is hard with parents and hard with relatives. It is hard to see a child dying...

Ksenia: So, doctors spend many years learning to save lives, but in palliative care, on the contrary, they help to let go.

Anush: Yes, and this is hard for many. I told the director, who ultimately makes personnel decisions that people should be at least 35-40 years old so they somehow know what life is like and have children. We have many nurses and orderlies who often have their own stories in the family: some have a disabled child, others have lost sons or husbands in war...

Ksenia: People often come to the nonprofit sector precisely because of their personal stories. How many people are on your team now?

Anush: Our team includes:

  • One doctor
  • One senior nurse
  • Six duty nurses
  • Four orderlies
  • One physiotherapist who comes to work with children
  • One spiritual mentor

Ksenia: Tell me a bit about the spiritual mentor; where does he come from?

Anush: The mentor was already in the Center; he was integrated into the treatment of children in the haematology and oncology departments. Then, when the palliative care part opened, he already knew these children and started coming here. The parents wanted the chaplain to come, and the children too, especially the older children with whom he had already interacted.

Ksenia: Is there a psychologist on the team, and how does their work function? Do you and everyone working here seek psychological support?

Anush: The hospital has a psychosocial team - three psychologists and a social worker. They work with children during treatment (in haematology and oncology). If a child ends up here (in the palliative care department), they come here and continue to communicate with them. And it happens very quickly because they are not new people; the children already know them, and so do the parents. Psychologists help us, too, because psychological support is also needed for the staff. We always discuss any problems at the end of the day; if there are any, we pass them on to the psychologist, who then conducts individual or group therapy.

"To reach a day when no child needing palliative care needs anything"

Ksenia: What moments in your practice bring the greatest satisfaction and sense of strength?

Anush: Parents, even when a child is dying, say "thank you." They say it many times. Then we stay in touch; they always send cards and congratulate us on birthdays, International Women's Day, and the New Year. This means a lot to me. I think I truly helped them.

Ksenia: Do you have any rituals that help you when a child passes away? Do you do something together with parents?

Anush: Yes, we release lanterns into the sky; our psychologist came up with this idea. Parents choose a day when they want to do it. They all come to the department, with relatives or whoever they want, and together with the whole team, we release these lanterns. If it happens in the evening, it is very beautiful.

Ksenia: Yes, it is like a little star lighting up somewhere... It is also about "letting go." What are your hopes for the development of paediatric palliative care in Armenia? What do you dream of?

Anush: Reach a day when no child needs palliative care or anything. So parents don't have to think about how to organise everything if their child wants to stay at home; they don't have to think about who will pay for it, so they have everything they want. I hope we have the means to provide them with all of that. That's my dream today.

Ksenia: What recommendations would you give young or aspiring professionals who want to transition into palliative care? If there is a doctor who learned about palliative care just like you did once, what advice would you give them?

Anush: Not everyone can work in palliative care, it is difficult. But when you think about the quality of life of a particular person, when you have examples of doctors who work in this field, then the decision to work in palliative care is easier to make.

Ksenia: If someone like Anush, who once went to Poland to study all this, came to you, what would you say to her?

Anush: I would be surprised if there is another "abnormal" person who truly wants to help.

Ksenia: How do you think young specialists can be attracted to palliative care in Armenia?

Anush: Very young specialists shouldn't be attracted; there should be some life experience. There should be a good salary so that people have financial motivation. That's important. Only some people can become surgeons, dentists, or microsurgeons. The work of palliative care specialists should also be part of that category and be well-paid.