Fragile spirituality

Her doctoral research shows that parents attach great value to these non-coincidental events, which are experienced both during a treatment process and after the death of their child. Nette calls this form of spirituality fragile or fragile spirituality: “Spirituality is often perceived as floaty, religious or vague. You have religion – your beliefs – and that may include spirituality. But that is all too big for what I have seen and still see, with many parents. My research shows that there are also people who have nothing to do with religion, spirituality or philosophy of life, but who nevertheless have experiences that transcend ordinary, earthly life. Like a meaningful song on the radio at the right time, the sun shining on the grave or a bird singing every time you enter the cemetery. In the context of the palliative process, these are small events that connect parents with their child, but sometimes also with God. These are events that you cannot explain.”

Discomfort

“These events are difficult to explain to someone else, because people often say: you want to see this. What matters, however, is that this concrete event touches parents, offers comfort and connects them with their child. Someone else does not experience it the way you experience it. When I tell outsiders about it myself, they also become a little uncomfortable. That's exactly what makes it interesting. Of course it also has to do with emotions. That's not that difficult for me as a chaplain, but for a doctor who has to make decisions and have bad news conversations it's a bit more complicated. I can just let the emotions be. Even if the parents cry for an hour, that's fine. But for a doctor who needs permission, has to explain or who wants to hear that parents have understood, that is complicated.”

The meaning of fragile spirituality

Nette wants to make caregivers aware of the significance of these events for parents. A telling example is a situation in which parents indicated that their child was watching them, even though there was no longer any brain activity. “Care providers often take this literally and talk about the functionality of the body: the brain no longer functions, so it can no longer consciously look at you. For parents, however, there is a whole meaning behind it. Watching their child is an expression of contact and connection for them. Communication from healthcare providers often remains focused on providing information, but how people absorb this information and what meaning they give it is sometimes forgotten.”

Connection in the hospital

The doctoral research shows that not only spirituality is important, but also that a sense of connection with the child and with caregivers is essential: “Connection is actually the basis of all life. We are nothing on our own and that is all the more important when you are thrown back on yourself enormously. Parents in a hospital, especially in intensive care, end up in a world that is completely foreign to them.

So much is happening there that disrupts them, frightens them and makes them very lonely. Everything that is familiar is not there. The people, the environment, the situation, everything is strange and frightening. And then you really need it to be connected. The feeling of people standing next to you and seeing you. The feeling that you are being heard, that your child is being heard, that you matter. Those are of course the things that are important in life at all. You need people who connect with you with their warmth; these are the healthcare providers par excellence in the hospital. A big challenge for me is how to connect with people who don't speak the language. How can you make contact with them and how can you alleviate their loneliness a bit.”

The importance of physical closeness

In her research, Nette was surprised by the major role of physical connection for this form of spirituality. “It doesn't start with what you believe to be true, but with the physical aspect. It is important for parents to connect with their child. If a child is in Intensive Care, on all kinds of tubes and devices, then as a parent you cannot change diapers, give your child something to drink, cannot touch it, cannot hold it. That's when you need someone to help you connect. Someone who shows you how to hold your child, who encourages you to come close or talk to your child. Someone who is not at a distance and who helps you cross the threshold of a world that you do not really know. Sometimes the nurse is literally and figuratively at a distance on the other side of the incubator, but when they are next to you you feel the support, the connection and the warm attention of the nurse. Around the time of death, physical connection between parents and their child is very much emphasized, for example by placing their child in their arms or by placing two beds together so that parents can lie next to their child together.”

Attention to the parent

It is also important to take an interest in the parent, thinks Nette. “A parent said that she once sat with her child at the incubator. The mother had a cold and a runny nose. She held the child in her arms. Then a nurse took a handkerchief and wiped her nose. Without saying anything. That will be remembered. That's attention. That is something special that touches you and that you are briefly scammed by.”

We are all affected

“If you work in pediatric palliative care, the sadness, tension and fear become familiar territory. That's actually weird. That is something I would see as a follow-up to my PhD research. We as professionals must also deal with our own grief and the grief of the people we work with. It has an impact on us and we also give it meaning. It concerns different people: the child in question, the nurse, the parents, doctors and others involved. They are all affected by the situation, including the healthcare provider. He must be aware of this and be able to deal with it. Talk about it and be free about it. That's the other side of the story."