Thinking about the end of your child’s life is extremely difficult, and requires a lot of emotional strength. At some point after your child’s diagnosis however, it is something that you must address and plan for as a family.
A strong message we’ve heard from families over the years is that if you make choices in advance of your child’s death, it means that when your child does die, you can concentrate on supporting each other and dealing emotionally with the situation, rather than having to think about practicalities and make important decisions at this time. It also gives you time to think carefully about big decisions such as whether you want to explore the possibility of organ donation, or whether you want equipment such as feed tubes and IV lines removed to allow a natural death.
Planning ahead also means that you can explore all the options, and find out exactly what is possible, so you can make informed choices.
Planning for end of life early means that your child can be involved in the decision making if they want – you may find they have strong opinions about what they want for their funeral or they may want to give some of their belongings to certain friends.
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 questions they might have.
You should be supported by your child’s care team to write an end of life plan in collaboration with them, detailing all aspects of what you would like to happen at your child’s end of life, and any special wishes you or your child have. For example if your child dies in hospital you may want to take them home or use a local children's hospice service. It might also be important for you to have religious rituals performed. Having these things written down in an end of life 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.
Together for Short Lives publishes a family factsheet on Care planning in Advance which you may find useful; or you can have a look at the End of life and bereavement section of A Family Companion. We have also produced a leaflet to support parents when making Critical care choices for your child.