Perspectives on Paediatric Palliative Care through Yuri’s Story

Categories: Community Engagement.

‘We are grateful to Yuri’s family, the EAPC Children & Young People’s Reference Group for allowing us to share Yuri’s Story.  If you would like to learn more about palliative care for babies, see our latest enhanced e-learning modules on Neonatal Palliative Care HERE.

Short biography of Yuri

After an uneventful pregnancy, in the third trimester, Rebecca and Daniel were told that their baby had a diagnosis of a very complex, rare illness. Initially, they were given two options: the termination of the pregnancy,  or a highly-intensive treatment with a very high risk of mortality. However, they asked for a third option – that of letting nature take its course, in other words, palliative/comfort care. The options were discussed by the hospital ethics board and Rebecca and Daniel were referred to a specialised paediatric palliative care (PPC) team. Their baby’s birth took place at the tertiary centre and then, after a couple of days in the neonatal unit, they took their baby Yuri home, and care was provided by homecare nurses, the PPC team (medical, nursing, psychologist, social worker), the midwife and a bereavement care team. Thanks to clear advance care planning, transition to care at home from the hospital was facilitated within two hours. Yuri lived for 17 days and died at home peacefully in the presence of his family.

Interview

Thank you very much for taking the time for this interview. We would like to explore the meaning of paediatric palliative care for you, Rebecca and Daniel, as parents of Yuri, and his grandmother, Olivia.

Rebecca, can you share with us a special moment with your son?

Actually every moment was special and beautiful. Everything was equally beautiful. Especially, leaving the hospital, when there was a rainbow in the sky along with the moment that we entered our home together with Yuri. Having the normal experience of going home with our baby was the most beautiful moment for us, because, from then on, we were home with him.

Daniel, what would you like to share with us – what was a particularly beautiful moment for you with Yuri?

As a father, the bond is much stronger once you are holding your child in your own arms. As Rebecca said, every moment was beautiful, but when I was able to hold him in my arms for the first time, I really realised what it means to be parent of such a little person. Going home and experiencing daily life with him, such as walking to the village shop, strolling along the lake, showing him the garden, were also very beautiful moments we could share with him. We are indescribably grateful to the paediatric palliative care team that enabled us to experience this. If we had chosen one of the other two pathways, we could never have experienced this.

Olivia, how do you remember your grandson?

For me, he is like the most beautiful flower in the garden, a flower with a warm colour, like a sunflower with a strong radiance. To see how this flower grows, blooms and disappears again. That is my memory in a symbolic language. Other memories of Yuri are of him holding up his hand in his unique way, so powerful. Next, his charisma, his eyes, his gaze and the calm he exuded. That will stay with me forever and is what I remember the most.

The support of the paediatric palliative care team started even before your son was born and continues to this day. How did you experience that and what significance does it have in retrospect?

Daniel: It was like being in a cloud and not knowing where to go. As soon as the palliative care team became involved, we felt we were in good hands and were shown a path to walk on again. That was so valuable for us. The phase up until then was almost the worst of all, even though we knew Yuri was going to die, the uncertainty of what was going to happen was just about the worst. It was only once the paediatric palliative care team were there to support us, that we felt at ease and knew we could take the path that we felt was best for our son. It is very important to me that this kind of support exists, it is incredible. Throughout the whole time, so many skilled healthcare professionals were involved and have helped us so much.

How did you experience developing a palliative birth plan, which included various options, including the option to go home after delivery to care for Yuri?

Rebecca:  The birth plan was great. As a layperson, you are not familiar with this topic at all. We had no idea what was to come. With the paediatric palliative care option, we had a safe haven where we worked out a path together. All options, literally all, were on the birth plan, so we knew what would happen and in which scenario. It gave us a lot of security, because of the birth plan, but also because we knew the experienced paediatric palliative team was there for support. I also loved the fact that going home with our son was mentioned as an option, even though we both said before the birth of Yuri that it was not an option for us. However, with our permission, you made the necessary preparations anyway and didn’t just remove it from the plan.

What ultimately triggered the decision to quickly go home with your child?

Rebecca: Yuri was having a weak moment, was restless and had a bit of a fever, and the neonatal nurse was talking about Yuri leaving us at some point. We both had the same impulse: we had to take Yuri home immediately – it was inconceivable to us that Yuri would only get to know the hospital. We are so grateful for this moment, which prompted us to make this decision.

How did you experience the collaboration between the teams (midwives, nursing, medical from the three teams)? Did you experience it as a team effort and were there perhaps gaps?

Rebecca: The PPC team at the hospital, the paediatric home care nursing team, and the midwives, worked very well together and dealt with us very sensitively. Only, at the time of prenatal diagnosis was there initially a lack of referral to the other teams.

Daniel: We were also very well looked after during the three days of induction. Once at home, the paediatric home care nurse gave us space but was still always there when needed, maintained contact with the PPC team in the background without burdening us, which was very valuable.

Rebecca: It was very helpful that we could just be with Yuri and that the PPC team and paediatric home care nurses were in constant communication, including in-between home visits. The administrative support was also very valuable. Otherwise, it would have been far too much for us.

What key questions were you concerned about at home and what helped you?

Daniel: A key question was definitely whether or not we had made the right decision. I don’t think we could have done better, but this question always comes up. The paediatric palliative care team kept reassuring us that we were doing the right thing.

Another question came up when he was dying: was he experiencing pain?

We were accompanied and guided very well in the dying phase. We  constantly had healthcare professionals around us in the end for the last 15 hours, and every change in our son was explained to us, which helped us a lot.

Rebecca: We didn’t know how long Yuri would live. That was on our minds at every moment. Every time he took an unusual breath, we didn’t know what it meant and what was to come. It helped us a lot that we could always call the PPC team and paediatric home care nursing team and ask questions.

Olivia: I shared Daniel and Rebecca’s questions, but of course very much in the background. I didn’t go to Daniel or Rebecca with my questions. I tried to shield them from my worries. They kept me informed without me having to ask, for which I was very grateful.

I used to work in crisis intervention. When I realised that the paediatric palliative care team had some kind of crisis intervention plan, it calmed me down: I knew they were now in good hands. Their support and guidance made me feel very relieved, because at first I felt like I was carrying a lot. I could see how burdened they were and that they were not getting enough support initially. Thanks to the established support, I was able to step back, and that’s good.

Daniel, around birth, as during pregnancy, the child and the mother are the main focus. As a father, what was going through your mind when you received the diagnosis and what helped you categorise it all, possibly combined with concerns about the child and your partner?

As a man, such a diagnosis for your child before birth still hit me hard, even though the bond with the child differed to that of my partner. The planned path of life was completely destroyed. I switched to survival mode and had the feeling that I could not show any weakness now, as Rebecca had the baby in her belly and was additionally burdened by the excessive amount of amniotic fluid. I took on the role of organising everything. Unlike Rebecca, I could escape from this situation occasionally, but not completely, as I was always thinking and worrying about everything. I thought that showing weakness would have brought my partner down even more, so I tried to remain the stable factor.  At diagnosis, there was a lack of support, we were up in the air and I tried to bring calm. It became much easier when the paediatric palliative care team joined and I had much more support for myself, too. It would have been great for us to have support right from the beginning.

Olivia, you have been in close contact with your daughter and her partner – and continue to be so. Please tell us what you, as an affected grandmother, have initiated for other bereaved grandparents.

It didn’t come about so selflessly. I realised that such an experience separates us from the ‘normal’ grandparents who exchange photos, knit and have fun. I felt like I was on another planet and realised I needed contact with people who had also gone through this. Otherwise, I would feel more and more lonely. I was very grateful to learn that the psychologists of the paediatric palliative care team also offer counselling to grieving grandparents. This psychologist saved me. She supported me in the idea and put me in touch with others. Meanwhile, a group named ‘Storm Grandparents’ has been formed with five grandmothers and one grandfather. We meet every 2-3 months. We realise that such experiences also have long-term consequences. This doesn’t stop after a year and talking about it is very valuable for everyone.

I have also made contacts through the podcast, an article in a magazine for grandparents and a donation letter for the Child Loss Centre (editor’s note: links below). Further, bereaved grandparents get in touch with me who don’t want to join a group and I occasionally meet them separately. It is so good to realise that everyone feels the same. That’s the crazy thing.

Finally, what supported you the most in this journey and what would you wish for other parents/families in similar situations to have access to?

Rebecca: I definitely wish that the PPC team had been available to us sooner. At diagnosis, we were presented with the options of late termination of pregnancy or primary life-extending treatment options – we had to mention the palliative care option ourselves. Furthermore, I would like other people in similar situations to get information about the PPC team and receive a timely appointment with the PPC team. If those affected express the need to talk to the PPC team, this should be organised, even if it may not ultimately be an option due to the course of the child’s illness. Not like in our case, where we were put off for weeks and eventually had to organise an initial contact with the PPC team ourselves one evening via the emergency number.

Daniel: I can only agree with that.

Olivia: This is also very important to me. I think there should be immediate crisis intervention measures after such a diagnosis is communicated. It seems to me to be the most critical moment in the whole journey, and it should be ensured that the family members involved are asked what they need at that moment and they do not have to go home alone afterwards.

I know of a case where the three options were presented but without explaining what they meant. In my opinion, early guidance is also needed from a specialist trained in PPC.

Thank you very much for this conversation.

Plase find the original publication of this story HERE.

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