How to tell a child they have a terminal illness?

[Double-Helix, BSN, RN]

On our floor recently we had a 6yo with a Pontine Glioma on the brainstem. It's a new diagnosis and she is undergoing radiation therapy, but all treatment for this type of tumor is essentially palliative, as the survivial rate is virtually 0%. The patient knows very little about the prognosis at the moment, but I know there will come a time when it has to be explained in terms that the child can understand. The child is very smart, but the parents are baffled about how/when to talk about the diagnosis and death.

Can you all lend some advice about discussing issues like this with children? What guidance do we give the parents in terms of beginning/leading the discussion? Are there any analogies that you use to describe certain illnesses in child-terms?

Bonus question- what's your experience with the length of survival following diagnosis of a Pontine Glioma?

[NeoPediRN]

I have cared for several children with terminal brain tumors, including a pontine glioma. They usually get proton beam radiation as palliative care. We avoid using talking about death in terms of going to sleep. If they are age appropriate/young we bring in child life and the chaplain services. We talk about heaven and get a sense of what they think it's like. Sometimes the parents are present but most times it's not a conversation they feel brave enough to be present for. We talk about beliefs and God if the family is religious. Sometimes we have them draw pictures of heaven. It's never an easy conversation but kids as young as 4 have known that they were dying and most are so sick by the time we have the conversation that they are rarely fearful of death. Their biggest fear tends to be separating from their parents. We tell them mom and dad will always be close by and that the child will get to watch them from heaven and be like a guardian angel for mommy and daddy. Once they get close to active death they get heavy pain medication and sedation for anxiety if necessary. They are very comfortable and usually don't express fear. If they can't go home (some parents don't want their child dying in their home, it's too haunting for them), then we make their room inviting and happy. We use their bed linens and stuffed animals and put lots of happy colorful art up. Telling a child they're going to die is one of the hardest, most gut and heart wrenching things you'll ever have to do as a nurse...but easing their fear about death will also be one of the most fulfilling.

[littleneoRN]

A good child life specialist is a must in this situation!

[llg, PhD, RN]

It's not something a newbie should handle alone. This is a time for the team to work together -- with the experienced professionals taking the lead. Also, don't be afraid to talk with your teammates about your feelings and needs as this situation progresses.