We want to make it easier for parents, young people and healthcare professionals to bring the unspeakable to the table.
One of the goals of NPPZ II - Child and Adolescent is to enable open discussions about incurable illnesses in children and young people. It also aims to facilitate discussions about the ethical dilemmas and issues associated with these issues, both in healthcare providers' offices and at home. In this update: five questions for Laura Ruitenburg, project leader of "Making the Undiscussable Discussible," which contributes to this process.
The project emerged from the "Going for Hope with an Eye for Limitations" dialogue roundtables organized between 2020 and 2022 by the Children's Palliative Care Knowledge Center and the 2CU Foundation. Parents of children with profound intellectual and multiple disabilities (ZEVMB) and healthcare professionals discussed topics related to the quality of life and death, and the limitations thereof. They learned how important it is to be able to discuss topics openly and to bring the unspeakable to the forefront. Therefore, it was decided to include this topic as a priority on the knowledge agenda and to include the project as part of social awareness within NPPZ II - Child and Adolescent .
What is the aim of the project?
We want to make it easier for parents, young people, and healthcare professionals to discuss the unspeakable. The ultimate goal is to know which care and support is appropriate for the child and family, and which isn't. Or, as co-initiator and experienced parent Sarike de Zoeten puts it: "Only when we dare to face the dark side of all these wonderful medical developments and acknowledge that life isn't always controllable can we start working on care and policies that can also properly support these children and their loved ones in all their facets. Because children who cannot get better also deserve our attention for a good life and a kind death."
What is unspeakable can be different for everyone.
What is non-negotiable?
"What's unspeakable can be different for everyone. Often, we think of topics related to death and end-of-life decisions." "That's not without reason, but we shouldn't equate unspeakability with that. Feelings of guilt about what caring for and grieving for your child means for other aspects of your life—siblings, your relationship with your partner, your personal development, or your career, for example—can also feel unspeakable," says Marije Brouwer, a researcher involved in the project. Laura Ruitenburg: "That's why the project group decided that within this project, we'll encompass the unspeakable across the entire spectrum of pediatric palliative care, from diagnosis to aftercare."
Who is involved?
The project group consists of participants who participated in the dialogue roundtables and parents who are involved with NPPZ II - Child and Adolescent as experts by experience. Throughout the project, we will use the participation matrix to determine when and how they can utilize their expertise. We hope to involve more healthcare professionals in the project so they can contribute their experiences based on their expertise. This includes nurses, doctors, childcare workers, and spiritual caregivers. Anyone who feels comfortable sharing their experiences is welcome. The project group will report to the steering committee.
In this way, we are jointly planting more and more seeds to further improve pediatric palliative care.
What will happen in the near future?
During this first phase of the project, the exploratory phase, the project group will explore what has already been described on the topic in the literature. Together with the scientific committee, we will examine the insights gained from other researchers and how we can interpret the theme. Parallel to this, we will gather feedback from parents, young people, and healthcare professionals on what is considered unacceptable and why.
Marije Brouwer: "That's why it's important to look at why the conversation is stalling; is it unfamiliarity, stigma, embarrassment, or is it, for example, because we're simply not always talking about the same things when we discuss topics like quality of life? Is something undiscussable because it's not being spoken, or is it being said but not heard?" Laura Ruitenburg: "We're exploring the best methods to explore this. For example, through a questionnaire or one-on-one interviews. Later, we want to ask focus groups for their ideas. Experiences from all perspectives are important in this regard: from mothers and fathers, and from people with diverse religious and cultural backgrounds."
What do you hope for?
I hope this project will lead to parents, young people, and healthcare professionals seeing and hearing each other more clearly, giving them the courage to raise issues. It will also create a sense of space for differing opinions. I envision us developing guidelines or methods that help guide the discussion of complex topics, creating greater consistency in the subject matter and a framework for action. To achieve this, it's important that we collaborate with other projects that also address ethical dilemmas and share common ground, such as the active euthanasia program for children aged 1-12 . In this way, we will collectively plant more seeds to further improve pediatric palliative care and ensure that the total result will ultimately be greater than the sum of its parts.