A friend from Linkedin, Carol Harris, RN, wrote an excellent response to my quest for further information. I have included it below:
"I was a pediatric oncology nurse at Johns Hopkins Hospital in Baltimore, so this is a subject near and dear to my heart. We practiced primary care nursing and every patient I had died. I had three children of my own, ages 7, 13, and 15 at the time, and could see first hand the differences between the dying children and healthy ones. My experience and comments are about children dying of cancer and leukemia.
"I met most of my patients on the day of diagnosis. I was frequently at the meeting with a pediatric oncologist and the parents where they learned of the diagnosis, sometimes in the middle of the night. What the parents are told about dying is just as relevant as what the children are told. Some didn't want to know the prognosis, or very clearly wanted some hope. I saw marriages destroyed by the stress of having a dying child, some parents succumbed to substance abuse to quell the pain of what they were facing. Many times it was the child who knew dying would be their outcome and their parents forbade conversation about it from doctors and their dying child.
"Seriously ill children are 'wise' in a different way than others, they are conversant about the procedures and test results and want to know what everything means. We had Child Life on our unit and the leader spent a lot of time role playing with dolls and medical equipment. I saw 3 year old children attaching 'IV tubes' to dolls, reassuring the dolls that it would only hurt for a minute, but would make them feel better. I kept Kleenex in business while I worked there. The youngest children, up to age 5 or so, seldom asked about death, and many didn't really grasp the concept.
"The older children, about 6 to 12 years old, saw what their 'friends,' the other children they got to know through the clinic visits where they often had their chemo infused, or from Child Life play sessions, went through. They became aware that others were dying. Many asked their parents, 'Am I going to die?' or TOLD their parents that they were dying themselves, often in a matter of fact tone. Those children, ironically, would sometimes realize that their outcome was death if they got their 'Wish' trip to Disney World. One 10 year old girl told me, 'I guess I'll die pretty soon because they are sending me to meet Mickey', and laughed. (Where are those Kleenex???)
"The teens were the hardest, in a way, they ALL knew. They were ALL more realistic than their parents. Most of them felt strongly that they wanted to LIVE until they died. They wanted to 'look good', not be tethered to medical equipment, and they were invariably the ones who decided when to call it quits. THEY had to convince their parents that it was time to stop the treatments.
"There's no one answer to the question of what a child or PARENT should be told, just like there isn't one conversation we have with a terminally ill adult. You tell them what they are ready to hear, and answer questions honestly. Often the parent(s) need more support and guidance than their child does. I'd tell parents to involve their religious guide (If they have one) or refer a chaplain if appropriate (it almost always is), involve Child Life (bless them!!!), get pediatric hospice involved, and PAY ATTENTION to the dying child's siblings. Often siblings are suffering as much as the dying child. There's an excellent book, 'A Taste of Blackberries' by Doris Buchanan that is about a child whose friend dies that is helpful for siblings and friends of a child who's dying."