Compassionate support by PatchSA

Thinking about the end of your child’s life is extremely difficult, requires a lot of emotional strength and individuals and families differ in how they deal with it. At some point after your child has been diagnosed and their condition appears to be deteriorating, it is something that you may want start thinking about, and when the time is right, to address.

It is important to try as much as possible to prepare for a peaceful, comfortable and dignified death in an environment best suited to the needs of your family and child. As the end-of-life approaches, some children and their families feel more reassured in the hospital environment surrounded by staff with which they have developed a close bond. Others prefer to have the child at home or in a hospice. It is important to talk to your child’s primary health care professional (or the palliative care team if there is one in place) and decide which option works best for you and your child.

Advance Care Plans

An Advance Care Plan is a document in which the goals of care to be provided during this period are clarified and you decide which treatments may or may not be appropriate in terms of reaching those goals. This is a collaborative effort between yourself and the team of caregivers looking after your child in which you are given some time and space to think about the options before you finalise your decisions.

As well as covering the practical issues, planning for end of life gives all family members the time to mentally prepare for this event, and the opportunity to talk about things that are worrying them or deal with any questions they might have. Having these things written down in an Advance Care Plan means that any professional caring for your child at the time of their death will know exactly what to do in order to carry out your family’s wishes. It also gives you space to be there for your family and to give each other emotional support, rather than having to deal with the added stress of having to make difficult decisions under pressure.

Some families may want to start thinking of ideas and collecting items for memory boxes if they have not done so already. Creating a legacy of memories, and in particular, involving the siblings in this process, will help the families during the bereavement period.

During the end-of-life stage, some parents may also want to start thinking about, and planning the funeral, others not.

If you have any comments or questions that you would like one of our experts from the network to respond to, please send an email to