In the 'Passion for the profession' section, we ask (care) professionals what drives them to dedicate themselves to pediatric palliative care. This time we speak to medical ethicist and researcher Marije Brouwer. With her PhD research 'At the boundaries of life', Marije has made an important contribution to the introduction of the active termination of life scheme for children aged 1 - 12 who are suffering seriously and with no prospect of improvement.

How did you get into pediatric palliative care?

During my bachelor's degree in philosophy, I rolled into medical ethics via an internship on end-of-life decisions in very premature babies. So the fact that I work in pediatric palliative care is actually quite a coincidence. After my studies I immediately started as a PhD student at the UMC Groningen. Under the supervision of Eduard Verhagen and Els Maeckelberghe, I conducted research into suffering and decision-making in children with a life-threatening condition.

In recent years, as a researcher in Utrecht, together with Marijke Kars, among others, I have investigated how parents give meaning to their reality of caring for their child who is life-threateningly ill or who may die. Meaning and purpose is always there. Not only during difficult moments or for religious people. The same also applies to ethics. We mainly think about this in terms of very important and big questions, but ethical considerations are always there. What something does to you and what is important to you translates into the choices you make. This affects the care process for your child.

Being a medical ethicist and researcher in the field of pediatric palliative care is great fun. As a researcher I am allowed to listen to the experiences of parents and doctors and as a medical ethicist I am allowed to think about difficult problems. The more difficult the questions, the more fun it is for me as a medical ethicist. The issues that play a role in pediatric palliative care are very important and from the first moment I came into contact with them, I knew I wanted to do more with this.

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

I have been interviewing parents and caregivers in pediatric palliative care for almost ten years about, for example, quality of life, decision-making or how children understand death. That's hundreds of conversations! And yet I remembered many specific details. That also shows how important I think this topic is. In these conversations, parents quite often indicate that they feel that their child understands what is going on. A five-year-old girl said to her mother: 'I don't think dying is so bad for me, because I'm not there to feel anymore. It is especially bad for you and for my girlfriends, because they are left behind'. Or a three-year-old girl drawing a ladder and saying, 'I'm going up. I'm going to live with the stars." I must add that this is of course interpreted by us in this way, we cannot look into their heads. Still, it is impressive how children can put complex subjects into words. I'd like to do some research on that.

Stories about serious suffering also stay with me enormously. Parents who say that their child has continuous epileptic seizures and is stiff all day long due to muscle tension. Children who can no longer even lie on a bed, because every stimulus is too much. Children who self-injure to drown out that physical suffering. But also the stories of parents who try with their young child and each other to move towards the end of life in a dignified way. Families who make decisions together about what is best for their child.

'You have a responsibility for the child and the suffering that exists'

In the conversations with parents, I found it very moving that the suffering of a child really does not always increase simultaneously with the seriousness of the circumstances. Children can be very limited in what they can do and yet give many signals of well-being, because apparently they can feel comfortable in their little world. Suffering and pain are not the same. If you are suffering you cannot be a person. Physical well-being is important, but also psychological well-being, the social part, being able to relate to a future and human dignity. Suffering is on all those aspects. At the same time, it is not a checklist.

The government recently decided that a scheme will be introduced for active termination of life in children aged 1 – 12 who suffer serious and hopeless suffering. Quite often I get the question whether the scheme will mean that we no longer want all children with disabilities because they suffer. No that's not true. Having an illness or disability does not necessarily mean that the child is suffering. It can be a reason that suffering will arise. The adaptability of children is also something that sometimes surprises me. They sometimes find very nice ways to deal with a difficult situation. But unfortunately there are also situations where it is not possible to get a child comfortable. These are very exceptional cases, but you have to take them very seriously. You also have a responsibility for that. You cannot say: 'we can do nothing more'. You have a responsibility for the child and the suffering that exists.

The great thing about Dutch doctors is that they talk very openly about the end of life. They want to be transparent and verifiable in this regard. This openness and carefulness also applies to this age group. I think it's commendable that they're bringing these difficult issues into the open.

What is your next step in pediatric palliative care?

Focusing on the scheme for active termination of life for young children, the next important step is to invest in education. You can now see that the relevant professional field is already quite well informed about pediatric palliative care. However, the group of professionals who occasionally come into contact with pediatric palliative care is much larger. Consider, for example, general practitioners. We need to think carefully about how we are going to ensure that not only a small group is very well informed, but that attention is also paid to the wider field. We cannot provide everyone in the Netherlands with extensive training on decision-making and conversation in pediatric palliative care. We can, however, think about how we can train as large a group as possible and make information and support accessible. There are some plans for the future.