Information for the public
Support during the final days
Support during the final days
If your care team believe the end of your child's life is near they should be open with you about this. It might not be easy to judge this accurately, even for an experienced professional, and they should be honest if they are unsure. They should prepare you for what to expect in the next few hours or days.
You know your child best, and sometimes parents or carers are the first to recognise that their child will die soon – the team should respect and listen to your feelings.
What should we expect from our care team at this time?
At such a painful time your care team should treat you and your child with empathy and compassion and help you address your fears and worries. They should recognise that:
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both you and your child may feel a huge range of emotions that might be difficult to express
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your child might want to ask if they are dying but need support to do this
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you and other family members might also need support to talk to each other, and to your child
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you and your child may need some private time together.
Following your wishes
It's important to check that your care plan is up to date (see making a care plan) so that you and your child's wishes can be followed. The care team may suggest changes to your child's treatment plan if they feel they are in your child's best interests, but they should also support your choices.
The care plan should state clearly what plans you and your care team have agreed for resuscitation if your child's heart or breathing stops. The professionals looking after your child should never assume that you do not want resuscitation. Talk to your care team if you think the resuscitation plan needs to change.
Eating and drinking
Your care team should support your child to eat and drink for as long as they are able to. If they can't or don't want to eat or drink they should be given ongoing mouth and lip care to stop any dryness and keep them comfortable.
Your care team should talk with you about the options that could help your child. This could involve giving food and fluids through a tube or, in very rare situations, through a drip (intravenously). You may have already made choices about this in advance, but the care team should discuss regularly with you whether you would like to continue. It is important to remember that continuing with intravenous feeding may affect where your child can be looked after towards the end of their life.
Stopping treatments that aren't helping
If your child becomes seriously ill, some treatments they are having may no longer be in their best interests. This might be because they are painful or uncomfortable for your child, or they may not be helping very much. If this is the case, your care team should discuss stopping these treatments with you. They can help you think about what is right for your child.
What if we disagree with our care team?
Professionals and families usually agree on what care is needed, and when to stop treatments that aren't helping. However, you may find that you disagree with your care team on a particular part of your child's care. If this happens they should discuss it with you so that you can decide what is best for your child together. You may want to get a second opinion from another healthcare professional, or involve someone like a chaplain who can help you to discuss the problem with the care team.