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Young people deserve to live independently with good palliative care

Jacqueline Bouts is founder and director of Xenia Hospice Leiden. She explains why it is important that a house like Xenia exists.

Jacqueline Bouts is founder and director of Xenia Hospice Leiden. A guest house and hospice for young people between the ages of 16 and 40 who need intensive nursing and medical care. Jacqueline explains why it is important that a house like Xenia exists. And she talks about the new care apartments, an important addition for the 18+ group.*

Which case from the past motivates you to this day to dedicate yourself to pediatric palliative care?

“Oh, there are many! But if I go back in time – Xenia Hospice had just opened for a few days – a woman whose partner had just been admitted to us said to me: “I feel the love for my husband coming back”. That is exactly what we want at Xenia. We are there for our guests, but also for their loved ones. They must be able to be together again. When such an experience is spoken, I know: that is what I want. Family and loved ones must also experience care. They now regularly say to us: we just have to be with our friend, partner or child and you take over the rest. Our guests and their loved ones should feel at home in our house. That is my biggest motivation.”


How did you get into pediatric palliative care?

“I am originally a pediatric nurse. I worked at the VU on pediatric oncology. At one point I moved to Leiden. There I worked with children who needed a bone marrow transplant. Then in the Academic Hospital Leiden (AZL), now the current Leiden University Medical Center (LUMC). I experienced quite a lot there and saw many children die. Fortunately, that happens much less now.

Jacqueline Bolts (1) As a pediatric nurse, I always loved teenagers; a challenging group to look after. When I worked at the children's outpatient clinic, I also visited families at home. There I saw moving situations, because the care was sometimes so intensive. Without childcare for teenagers. No respite care or hospices for that age. It was then that I came up with the idea of starting a house like Xenia. I shared this with the Adult Palliative Network Coordinator. She was immediately very enthusiastic and wanted to participate. In 2009 we became a foundation and in 2014 we opened Xenia in Leiden.

In the beginning I was often told: “It is not necessary for young people to open such a house. They go to their relatives, not to such a house. Not even during the last phase”. You then have to hold on to your own feeling. Of course I had seen a lot in practice, so I knew that this care would be necessary.

We started with the target group 16 to 35 years old. We soon expanded that to 40 years. That age really suits us. You look at a person's life stage. If it suits Xenia and the other guests, they are welcome. Our guests are all young and all have a life-threatening or life-shortening illness. That's pretty broad. We also provide bridging care. Then someone comes all the way from Enschede, for example, and is with Xenia during all treatments in the LUMC. Sometimes for nine months. They are often life-threateningly ill.”

What is your biggest challenge?

“We still see that it is difficult to get intensive care properly financed if someone is not yet in the terminal phase. For every guest who falls under the Long-Term Care Act (WLZ), it takes us a lot of time to obtain reasonable financing from this.

In addition, the majority of overnight guests suffer from Duchenne muscular dystrophy. In the past, this target group did not reach the age of 18. Now often, thankfully. We do see that the care is only getting heavier. As a result, the previously obtained indication from a care office (Wlz) is no longer sufficient if you look at the care they need at that moment. It only gets more intense. That is almost impossible to explain to a care office. They then say: Is he still terminal? How is that possible?

It is also a target group for which it is very difficult to predict how things will develop. You can see it getting progressively worse. But you can't announce that they're really working on the last bit now. You do not know. I must say that I am surprised with almost every guest with Duchenne when they die. That you don't realize how sick they actually are. They are so vulnerable. It does make me a little angry. It is also such a small target group. I think a care office is afraid to set a precedent.”


What is your next step in pediatric palliative care?

“The limit of 18-/18+ is quite exciting. The 18+ guests suddenly experience being independent without their parents. It is a whole process for the young people (and their parents) to be alone with us and to declare everything themselves. At some point there will be a moment of 'I really like it here at Xenia'. They taste the independence and then want to stay with us. That was not possible in the past, because we were not a residential facility. But due to the persistent demand, we came up with the idea of realizing four homes next to Xenia. A separate foundation has been set up for this purpose. Young people can live here and also receive 24-hour care from Xenia. These four care apartments will be ready in October. The apartments are located in the center of Leiden. That is of course a great place to live.

The guests who live there require intensive care. They cannot have serious personal or psychiatric disabilities, because we have not focused our care on them. They must be able to live independently. For example, a guest may need night ventilation and then it is of course perfect that we have that at Xenia. You walk out the door here and into their apartment. What does already exist are focus houses. That is a very nice facility. But they don't care. You see parents sleeping with their child. Then they are not independent, even though they would like to be.

I think more care apartments will be needed in the future. That is why we are going to build four extra homes in both Tilburg and Zwolle. They are actually just old-fashioned sheltered housing. We see that there is a huge demand for it. There is already a waiting list for it. That has to do with the good care we give to these young people. But also with the fact that young people more often pass the age of 18. I think we should continue to care for this target group. It doesn't stop at 18."

*Jacqueline Bouts received on April 21, 2022 during the symposium 'Collaboration makes stronger! Next step in pediatric palliative care' an Award for her dedication to young people in guest house and hospice Xenia.

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