Marie-José Brounen and Hilde Wielders of the Children's Comfort Team of Maastricht UMC+ know through their years of experience how valuable an Individual Care Plan (IZP) is. Marie-José works as a nurse in the children's intensive care unit and Hilde works at the Center for Respiratory Disorders in Children. Both also work as nursing case managers in the Kinder Comfort Team.

In the spring of 2020, a study was started into how the IZP can be improved and implemented. The ICP is there for a specific group of children with a life-shortening or life-threatening condition. Hilde was happy to hear that: 'I remember drawing up an ICP about ten years ago. It was already a nice plan then, but I thought I had to fill in way too much. That's why I rarely used it. Thanks to the improvements, the IZP now has an important role within our Children's Comfort Team (KCT).'

Method

1. When a child is registered, the KCT checks which doctor and nurse will help the family.
2. The nursing case manager makes a home visit, does an intake and tells parents about the IZP, among other things.
3. Back at the hospital, the nurse case manager makes a presentation about the child based on the five dimensions of pediatric palliative care: the medical, psychological, social, pedagogical and spiritual dimensions.
4. The dimensions are discussed during our multidisciplinary meeting. This includes doctors, a psychologist, a pedagogical employee and nurses. Anyone can ask the family's case manager questions about the family and together we will see what is needed, who we can deploy where and whether we should call in the Integral Child Care Network .
5. The case manager then draws up the IZP together with the main practitioner. Once the IZP is ready, it will be shared with the parents. Then they have time to think about this and possibly provide feedback.
6. The final ICP is placed in MijnKinderComfortNet . Then it is also shared with general practitioners and other healthcare professionals involved.

Draft
'It complements other care plans,' says Hilde. 'Most care plans only focus on the physical aspect. For example, we draw up an emergency plan at the Center for Respiratory Disorders in Children. This states what should happen when the ambulance arrives and contains treatment restrictions. However, it lacks depth. The IZP does contain that depth. In this, feelings are expressed, all dimensions are discussed.

Rest and openness
This depth can be confrontational for parents, but it offers tools to start a conversation. 'In general, people find it quite difficult to discuss sensitive topics. Yet I notice that they also get some rest once the IZP is there. After that, it is often set aside until needed or updated. Because both parents get to see the plan, I feel that the IZP gives them the opportunity to discuss certain topics among themselves. It contains subjects that they often think about, but that are not often discussed.'

Proactively discuss wishes and preferences
According to Marie-José, a case from the past clearly shows why an ICP is so valuable for all those involved: 'A slightly older boy came to the ICU. The parents were actually a bit surprised by the treating doctor, who very quickly asked the question: 'Do you still want to ventilate him?'. During our intake we discussed the wishes regarding ventilation and drew up an ICP. The parents liked to put their wishes on paper. Everyone knows about it and they don't have to have a discussion every time. There is a file in the hospital in which these kinds of treatment restrictions are recorded, but the entire reasoning behind such a decision can only be found in the IZP.'

The father did wonder if the treatment restrictions could be discussed again if things went well for a longer period of time. So after a year I called the parents to evaluate the IZP. The parents still stood by their wishes. Nevertheless, they were happy that it was discussed again because wishes can change or new insights can arise. This makes it clear that it is important to check with the family whether everything is still correct. For some, this has to be done every three months and for others it is enough to do it once a year. That depends on the situation and on the child and family.'

Work the same way
Because it was previously unclear who is responsible for the IZP, when it can be completed and for whom it can be of added value, concrete process agreements have been drawn up. Hilde is pleased with this: 'It is great that the agreements apply nationwide. It ensures that we work in the same way everywhere. And I think that's an important goal. As far as I'm concerned, we should work in Groningen in the same way as in Maastricht.'

Practice makes perfect
Marie-José already looks ahead to the future of the ICP: 'Nurses, and certainly also doctors and general practitioners, need to know what the ICP is and for which patients an ICP can be drawn up and that the ICP mainly revolves around Advance Care Planning . If we all start working with it, using the IZP will become easier for everyone. After you have completed an ICP a few times, you will automatically become familiar with it. Especially since it can be done digitally via MijnKinderComfortNet. Then it is much less work. It also helps to gain more experience in having conversations with parents. During such an in-depth conversation you get a completely different connection with the parents. You will then become more on the same page.'

More information
Do you have any questions about the national research project?   about the redevelopment of the Individual Care Plan, the IZP Project?   Please contact PhD student Chantal Joren via cyjoren@umcg.nl or view the website of the IZP Project: www.izpproject.com . Do you have questions about the implementation of the Individual Care Plan? Please contact Chantal van der Velden at c.vandervelden@kinderpalliatief.nl .

Read all about the IZP here .