The dangers in dying of ignorance

Moved by the case of `Child B', the mother of a boy who fought cancer says the truth is crucial

The case of the 10-year-old child whose parents felt she should have further chemotherapy despite doctors' advice to the contrary highlights the dilemma facing medics and families.

We were told our 17-year-old son had a chance of survival if given a second six-month course of chemo- therapy, administered intensively in three weeks. We were told he would be ill during it, but not how ill. The hours I spent by his bedside while he drifted in and out of consciousness - it was felt better to drug him to help himthrough it - were appalling. Once, he begged to be allowed to die.

He recovered somewhat, but never regained the strength he had had before the course. The disease returned; his was non-Hodgkins, a particularly virulent form of cancer attacking the lymph glands.

Doctors then advised complete body radiation followed by a bone transplant from his sister. We were not told how traumatic that would be, just that it took a long time. It was so bad that our son, laying close to death, shook with horror when complete body radiation was mentioned.

Afterwards, we asked the doctors why they had appeared anxious during this treatment as presumably they knew how it would affect him. They admitted they had no personal experience and had feared "it would scramble his brain". We had not been told this beforehand.

People had apparently been treated this way before but, when pressed, our consultant confessed not one had survived. This information was hurried over and it was only afterwards that we managed to decipher from the medical jargon thrown at us what was actually said.

Worse was to follow. We were told our son was to have a bone marrow transplant despite not being in remission. His care during the three weeks he lay dying became fragmentary. The consultant was now never available.

Our experience has taught us there has to be a time when the treatment is far, far worse than the illness. While we were in the hospital, another family's son died after his third bone marrow transplant. The brother who donated each time looked as ill as he. We felt experiments were being done without the family's fully informed consent and treatment was being given long after it was responsible to do so. Patients need to be informed not only of the risks but also of what the effects of the treatment mean in ordinary language.

At 17, our son was old enough to make up his own mind, but he was not given the full facts on which to base his decision. A slim chance, if it is the only one, is the straw you cling to, but not if you are told the risks so that ordinary people can understand them. Doctors inform you in a way that seems to give you a choice, but without the full facts, it is no choice.

Our prayers are with the parents of the little 10-year-old. I fear for them and what they must be going through.