Taking care of a dying child

Ansfriede Zwaagstra (Portugal)

After attending several lectures by parents and professionals during the last ICCCPO meeting in Amsterdam about palliative care for children, I would like to react, very briefly, not  judging nor criticizing anyone, but just by giving my opinion and testimony.

I have this need because I’m a little worried that the participating non-European, non-North American parents (who very often take Europe and North-America  as an example) might think that the only way to prepare a child who’s going to die, is to tell the truth, the whole truth and nothing but the truth.

I would like to emphasize, though, that first of all, each case is different and that the sentence from the Australian father Mr. K. Liebke  during his lecture about “Palliative care needs of families” says it all: “ I don’t know if it was right or wrong, but it suited us.”

After “recovering” from the tremendous shock that  “nothing could be done anymore” for our daughter of seven (2nd relapse ALL) we had to sit down and decide what to do.

Me (40years), mother of two, nurse, North-European, living in southern Europe for 16 years, no religion, married to a South-European (42 years), T.V.-director, no religion. Our other daughter was 6 at the time.

We decided not to tell our child that she was going to die. We found the idea too cruel:  taking away her hope and make her feel afraid, anguished. We were unable and unwilling to tell her that this was it. I could not tell her that there’s a heaven if I myself don’t believe in such a thing. We don’t know what it is to be dead! For a child of her age the big fear is to be separated from her mother (and father).

We tried (and I think we succeeded) to continue a normal life as much as possible for her and her sister. And we never stopped planning for things and talking about the future.

Despite the infinite sadness we felt, we had a very good time together, the last 7 weeks. As a nurse I could care for her in terms of medication, morphine catheter, etc. at home in her own surroundings, meeting her friends, sometimes going to school, taking care of her animals, playing with her sister, eating Hamburgers at McDonalds, having her birthday party one day before she died, careless, without any worry, relaxed, and of course sometimes in pain, but for that we had painkillers.

To be able to take care of a terminally ill child at home we have to feel confident, sure and secure and in this field still a lot has to be done. I think this is a right everybody should have; to die at home with our dearest close to us. But unfortunately this is still a privilege for a few.

I would like to end in repeating the phrase:

“I don’t know if it was right or wrong, but it suited us.”