If your child cannot be cured
When you are told that the doctors do not expect your child to get better, you enter a difficult and often frightening phase. Questions and emotions can build up while, at the same time, you have many practical decisions to make. This is when the Children’s Comfort Team is there to support you.
In the final stage of life, the Children’s Comfort Team focuses on your child’s quality of life and on making the end of life as comfortable as possible. Together with you, we look at what matters to your family. Which symptoms should we relieve as much as possible? What are your wishes for saying goodbye? Which rituals and memories are important to you? What helps you feel as much calm and closeness as possible? We focus not only on your child, but on your whole family.
If your child would like to die at home, we work closely with your primary care physician and home care providers to organize your child’s care as well as possible. We agree on who does what, make sure the right medication, equipment and support are available, and remain involved, including from a distance. The Children’s Comfort Team is available to primary care physicians and home care providers 24 hours a day, seven days a week. This helps ensure that your child receives the best possible care and support, both in the hospital and at home.
During this phase, you may find the brochure If your child cannot be cured (Dutch) or the book Koesterkind (Dutch).
Koesterkind
When you hear that your child will not get better, you and your family have a lot to deal with. You may wonder how to talk to your child and their brothers and sisters. How to make difficult decisions, what school can do to help, or how to involve the people around you. You may also have questions about saying goodbye and living with the loss of your child.
The book and website Koesterkind cover these and other questions. You will find practical information, stories you can relate to, and experiences from other families. Healthcare professionals also share their knowledge and advice.
Ask your treatment team about Koesterkind or contact the Children’s Comfort Team via kctu@prinsesmaximacentrum.nl). You can download the book at www.koesterkind.nl (Dutch). The website also has more information and stories.
Koesterkind is a joint publication by the Dutch National Childhood Cancer Association and the Princess Máxima Center, made possible in part by the Princess Máxima Center Foundation.