End-of-life planning is never easy, for anyone. However, there are some situations around end-of-life planning that shatter our preconceived notions of the process. Mostly, we try to ignore the topic. When we do think about it, we imagine that this will be something that we will need to help our parents navigate.
However, in some situations, a parent may find themselves in the position of coordinating end-of-life planning for their child. This difficult situation can turn unimaginable when a parent’s child is still an adolescent or younger.
While there is much discussion about how to best deliver cancer patients’ help and support in this time, end-of-life planning for childhood cancer is often something no one wants to think of. However, this does not mean that parents shouldn’t be prepared to support childhood cancer patients. Every family will deal with this struggle in their own way. Following is some advice on how to best support childhood cancer patients in these situations.
Children Deserve Their Voice Be Heard
Patients who are of legal age have many rights when it comes to making their own decisions about end-of-life planning. Children may not, under the law, be able to make major decisions, such as when to withdraw fluid or nutrition. However, children have a right to have their feelings and opinions heard and respected on these matters. In this case, parents serve as a vital link between their children and medical professionals. It’s important that parents not only communicate information from doctors but also help support childhood cancer patients in having their voices heard.
Avoidance Solves Nothing
The temptation with end-of-life planning with children is for a parent to take on all the information themselves, and to not open a discussion with the child. The parental instinct is to protect - while it may be impossible to give child cancer patients help or relief from cancer itself, they can be shielded from the full emotional understanding of what is happening.
However, it is better to be honest when trying to support childhood cancer. Children can often pick up on the emotions or subtext of adults around them. If the child feels a parent is not being honest about end-of-life planning, it can lead to resentment.
Besides resentment, children can sense that the parents are struggling with something and then they try to protect the parent by not discussing their fears. This leaves a young child to deal with the fear of death on their own leading to anxiety. Providing spaces for the children to voice their emotional concerns is important for their own mental health during this time.
Of course, how you broach this topic will depend on the age of the child. You may want to look into groups made to support childhood cancer to understand how to broach these topics.
Make Every Day Special
End-of-life planning is important, but you should not let this overwhelm everything else. The most important way to support childhood cancer is through love and attention. You need to focus on giving children a chance to find joy even in these dark days. What this entails depends on the age of the child, and how far their cancer has progressed. While they are still able, take the child out to the places they want to see, and the activities they want to do. Later on, try to bring people and things they want into the hospital or care room.
There are plenty of organizations that can help you with this. The best known is, of course, the Make-A-Wish foundation. Ronald McDonald House Charities also offers a home-away-from-home for children with cancer and St. Jude’s accepts all patients for treatment, working hard to develop research and find a cure.
