We know that families look for different types of information at various stages of their children’s lives. One of the most difficult subjects is end of life care. It’s something that many parents feel afraid or guilty to even ask questions about. Having some information in advance can to help answer some of these questions.
That’s why we’ve put the information you need about end of life care together here. This includes advice, guidance and some links to further reading.
In our experience many families benefit from being able to ask questions and openly discuss issues with a professional. So, if you want to speak to someone after you’ve read the information here, please just talk to your CHAS keyworker, a member of the Family Support Team, or a Diana Children’s Nurse.
As changes happen in your child’s condition, it can be helpful to plan ahead. An Anticipatory Care Plan (ACP) lets you be fully involved in any decisions around your child. It focusses on what’s important to your child and your family, aiming to provide guidance around maximising their quality of life.
It offers clear guidance on how certain situations should be medically managed. This guidance can be updated or changed as and when required, in conjunction with the team supporting you and your child. When you feel the time is right, you can add to the ACP – advising where your child’s end of life care might be delivered. This includes preferences around the place of care, such as a hospital, hospice or at home.
You don’t have to complete all of the plan at once. And, you can ask to make changes to it at any time. We’ll always be here to help develop the document with you, your family and your multi-disciplinary team.
Known as a CYPADM, this form is designed to help guide professionals in the appropriate resuscitative management of your child if they suddenly deteriorate. It offers different resuscitative intervention options at various stages of your child’s condition. That’s because different levels of intervention may be needed for the best quality of life.
This form is completed by your lead consultant in conjunction with you and your child. It’s important that you feel that the form reflects what matters to you with your child’s care at that time. The CYPADM is a guidance document and it might need to be updated if your child’s condition changes. You and your child will be fully involved with any changes that are made.
When your child needs end of life care, we’ll aim to support this in the most appropriate setting. This may be in a hospital, a hospice or your home. If you’re in hospital, you may be able to transfer to one of our hospices, or to your home. It depends on the level of intensive support your child needs.
We always aim to support this care in your first place of choice, although sometimes this is simply not possible. But, whatever the setting, you’ll always have our support.
At this very difficult time, the Choices for Care booklet can help you and your family to consider all of the options. It’s been designed by the Diana Children’s Nurses and you can download it here.
It can be very difficult to think clearly about what’s right for your child and family at this time. You’ll be fully supported by all the professionals you’ve known in the community, hospital and throughout CHAS.
When a child dies in Robin or Rachel House, the families can use the Rainbow Room. This is a private suite in the Hospice with a cooled bedroom for your child. Families can use the Rainbow Room and all the hospice facilities from the day of death until the day of the funeral.
If your child dies at home or in hospital, arrangements can be made to transfer them to the Rainbow Room if you wish.
You may prefer to keep your child at home, or have them transferred there after they die. We can help with this process, giving you everything you need to care for your child at home until their funeral.
Here are some articles related to end of life care that you might find helpful.