Information for the public
Making a care plan
Making a care plan
The care team should involve you in writing a care plan for your child. This is called an Advance Care Plan. It is a written record of your wishes – and your child's wishes – and includes everything that professionals who support your family need to know. It is often known as a 'passport to care', and can help you get the support you need. Helping to write it gives you a chance to decide what is right for your family, and to prepare for things ahead that might be difficult. It is also a chance to talk to your care team about the pros and cons of different care options.
Your care team should start thinking about the care plan as soon as possible after your child is diagnosed with a life-limiting condition. If you find out during your pregnancy that your baby has a life-limiting condition, your doctor, midwife and any relevant specialists (such as specialists in your baby's condition) should begin discussing the care plan with you before your baby is born. This gives you time to think carefully about important decisions.
What should go into a care plan?
The plan should have information about your child's medical condition, outlook (prognosis) and treatment. It should also include:
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who can give consent (you might need to consent on your child's behalf)
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what information about your child will be shared with other professionals
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your child's ambitions and wishes, and information about their life, like school and social activities
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any religious, spiritual or cultural beliefs your child has and how these affect their care
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decisions you have made, like where your child will be looked after at the time of their death, what happens if they need emergency treatment, and any wishes you have on organ and tissue donation.
Can we change the plan?
You can change it whenever you need to. It should be updated whenever something new happens. It should be checked regularly to make sure it is up to date and you should have your own copy.
Who will see the plan?
Your care team should think about who needs to see the care plan. For example, professionals in the ambulance service, your child's school, and at your hospice or respite centre (if you have one) might also need to see it so they know how to care for your child. Everyone should be given a new copy when the plan is updated.
Questions you or your child could ask
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What kind of decisions should we record in our care plan? What if we don't feel ready to think about some of these decisions?
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Can you help us decide the best care options for my child?
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Who do we speak to if we want to make changes to the care plan?
Thinking about organ and tissue donation
For some children and young people, it is possible to become an organ or tissue donor (tissue includes things like heart valves and the cornea of the eye). Deciding to donate an organ or tissue can mean giving the gift of life to another person.
Your care team should choose a time when you feel ready to talk about donation to ask you and your child how you feel about it. They should explain which organs or tissues your child may be able to donate. If donation is not an option, they should explain why.
If organ or tissue donation is something you or your child would like to consider, your care team should give you some written information about what's involved and answer your questions. You will need to decide on your child's behalf if they can't give consent.
It's important to remember that being a potential donor may affect where your child can be cared for at the end of their life. You should be given more information about this. You can change your mind at any time.
NICE has written advice for people who are potential organ and tissue donors here.