When your child is very unwell and difficult treatment decisions are necessary, it can be helpful to think about what is most important to you and your family at this time.
Health professionals will often refer to this as ‘your goals of care’ or ‘priorities’. Every family is unique and there are no right or wrong answers when deciding your goals of care.
They can often be influenced by your personal beliefs and experiences, culture or religion. We encourage you to talk to your child’s medical team to ensure there is a good understanding of what is most important to you and your family.
Examples of goals of care
The following are some examples of goals of care that have been identified by parents and carers:
- We want to take Kate home and care for her there
- We don’t want Mary to suffer
- We don’t want any more painful procedures or appointments
- We want to spend time together as a family
- We don’t want to come to hospital for treatment
- We want to go on a family holiday
- We don’t want Jayden to be sleepy all the time
- It is important that Leo gets back to school, to enjoy being with his friends.
I want to ensure my child has the best quality of life
When we focus on a child’s quality of life we try to minimise suffering by planning ahead; this can be helpful to prevent and manage difficult symptoms and pain.
Your feelings about what gives your child the best quality of life may change as the illness progresses. More thought will be given about certain treatment options that may help your child live longer, but will also limit their involvement in activities that bring enjoyment and happiness. Your thoughts and feelings about these may change from week to week or day to day.
You are not 'giving up' if you are focusing on the quality of life of our child
It is important to understand that you are not ‘giving up’ when you begin to make choices that are focused on giving your child and family the best quality of life instead of choosing treatment options aimed at making their life longer
This does not mean you will be asking to withdraw or withhold treatment; there will always
be options available to keep your child comfortable so that they are able to do things that
they enjoy.
The paediatric palliative care team have lots of experience in supporting families through this difficult decision-making process and are available to help you. The palliative care team’s role is not to make your decisions but rather to listen and help you reach decisions that are right for your child and family.
Knowing what treatment is best for your child
It can often be difficult for both you and the health professionals caring for your child to know what treatment is “best”. This can create added pressure for parents/carers.
Extended family members and/or friends may also have strong views about what treatment interventions are best for the child; these beliefs may differ from parents/carers which can create more stress within the family.
Every child will respond differently to certain treatments. It is important to gather as much information as possible by talking with your child’s medical team. You know your child best and you can decide what treatment is right for them when you feel you have been given all the information.
It is ok to stop some treatments and continue others
Some treatments will offer great benefits for your child while others may have negative side effects that cause discomfort and may increase suffering.
Telling your family, other children and friends
Palliative care teams believe that truth and honesty are what makes both children and adults feel safe. You can, however, give as much information as you feel able to or comfortable with.
This will often depend on the relationship you have with the person or child. If you need extra support, it can often be helpful to talk with a staff member from your child’s palliative care team.