When treatment is no longer curative

When you hear such difficult words, feelings of shock are very common. You may find yourself ‘switching off’ as you hear things that you do not want to hear. This is a natural reaction, and it is absolutely fine to ask for information to be repeated at a later time if you have not been able to fully take in all that has been discussed.

Often parents feel fearful. You may be scared and worried how you will cope or how others may react. You may feel incredibly angry (with yourself, with life, with relatives, with life or even with your child’s medical team).

Often you will feel more than one emotion at once. This is completely natural, and each person reacts in a different way. When you feel ready, it can help to share how you feel with someone that you trust, such as a family member, a friend, or a health professional.

Telling other people can be daunting, but by letting friends and family know, it can help you cope with the news and also give them the opportunity to support you. If letting a number of people know is too daunting, it may help to ask a trusted friend or family member help guide you and to wait until you feel ready to do so.

If there are other children in the family, how you tell them depends on what they already know, their age and their level of understanding. The most important thing is to be clear, simple and honest.

In certain situations, it can be possible choose where your child may pass away but in other situations, it may not be possible, especially if there is little time to plan.

You child’s care team will be able to talk to you more about this. It is not always possible to choose the place that your child dies, but if it is your child’s care team will do all they can to support your decision where possible.

If it is possible to choose, some families prefer for their child to be at home, where if feels familiar and safe. Others decide that they would prefer a hospice that is calm, homely reassuring place where the family can be involved. A hospice means that families have the support of professionals who can give nursing care and advice and enable them to concentrate on being there for their child.

Other families prefer the security of the hospital ward where their child has received their care. Whatever the location, care teams will do their utmost best to support you and your child. Remember you may change your mind about these difficult decisions and that is okay.

In some cases, it may not be possible to be with your child, or you may choose not to be with them when they die. Every family is different, and you should never feel guilty or under pressure to do things in a certain way. 

If your child asks you this, then usually it means that they are ready to hear the answer to this question.

However, rather than immediately answering, it can be useful to ask your child if there is something they are worried about or something that has changed that has made them ask this question. This can help open up the conversation

Families who we have worked with in the past have told us how much they valued the opportunity to make memories, make keepsakes and say goodbye where this was possible.

Ideas include making a memory box with the child if they know that they know that their life is limited. Also making hand and fingerprints, foot prints, saving locks of hair where possible, making hand casts, taking photos, making videos, making artwork and even writing memory notes to relatives.

Try to create a calm environment to make your child feel as comfortable as you can. Depending on what’s possible, you might consider playing soothing music, playing their favourite film, holding their hand or reading to them.

If you feel your child is in pain, then it is important to say as there are things that their care team can do to help them feel as comfortable as possible. If there has been time to prepare, your child’s care team will have put in place plans for different eventualities to make sure that your child is well looked after. If things happen more quickly, care teams are used to reacting to the situation and responding appropriately so they can provide the support your child needs.