The Individual Care Plan (IZP) has been updated. A lot of input was collected from care providers and parents about how the plan could be improved. Parent Johan van Zanden also contributed to this. His daughter Isabel was very severely mentally and multiplely disabled and died on December 25, 2019.

While taking lessons on pediatric palliative care, he came into contact with the IZP. 'I wanted to learn more, because I organized intensive care for my daughter together with my wife Brenda. When Jan told Peter Rake about the plan during his lesson, I was immediately interested. Until then, all organizations we worked with, such as the regional hospital, the UMCG and the expertise center, had their own care plan. I was done with that. The IZP was an answer to my search for a plan that we could all work with, but also to discuss issues aimed at Isabel's quality of life.'

Guidelines for a good conversation

Johan partially completed the IZP himself and took it to the main practitioner. "I wanted to start the conversation and think about some worst case scenarios together." Each time he tasted a threshold with the doctor to talk about it. "We'll do that next time," he would say. The care plan offered a guideline that Johan could use for a good conversation. 'This started a dialogue about, for example, treatment restrictions, when or not to resuscitate, administer oxygen or go to intensive care. Together we wrote down how we wanted to do it. With a pencil, because nothing was cast in concrete.' The plan brought peace and clarity, but was also confrontational because the scenarios involved the end of Isabel's life.

Extensive and readable

In addition to the more serious end-of-life topics, other themes related to quality of life were described, such as in the psychosocial domain. 'For example, we described how the care providers could best approach Isabel, what made her happy and what she liked to do.' All kinds of practical matters could also be found in it, such as the aids and medication she needed, her nutritional schedule, etc. Input was also requested from various healthcare providers. 'The aim was that no other plan was needed besides the IZP. And because it was written so comprehensively and legibly, anyone could use it. So not only the main practitioner, the Children's Comfort Team and the regional hospital, but also the nurses who came to our home.' Johan even noticed that the plan gave the GP confidence. 'She had minimal experience with this, so she found it exciting. The plan gave her support for certain issues, but also telephone numbers so that she could look up others with questions. She then went over the plan with someone at the hospital to familiarize herself with it.”

Include what's important

Johan did encounter a number of things with the IZP that did not work as well. These have been improved in the new care plan. 'The layout and language have been simplified. And there is more opportunity for customization. You can skip topics that do not apply to you (w child). There is also more room for your own things, such as a description of the child and how to deal with him or her, but also more information about the parents and any other children, so that care providers can take this into account. I also indicated that the document should be easier to find, so that everyone can quickly access the document, especially in acute situations.' Johan wants to advise other parents and care providers to include in the IZP what is important to them. Don't think of it as something heavy. You can put everything in it. Not only topics about the end of life, but also how to deal with the person who needs care. That can always be adjusted. This way you can use the plan as a tool to talk to each other about the quality of life of the child.'

Read all about the IZP here .