Chapter 11 - Terminal

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In the case of 'Doctor Shopping' there is always the question of whether this is a driving or driven child. To what extent does the decision lie with the child? How much are the interests of the child swamped by the ultimate parental quest for survival. Above all there is issue the of child's quality of life. With every procedure there is risk. With most treatments the risk is quantifiable to some degree. With 'Doctor Shopping' there is the balancing of say a minimal chance of another year's survival against the pain and suffering endured by your child in surviving that long haul.

There is also a problem when taking a child abroad for new wondrous experimental treatments. In many countries, Britain included, there are structured and carefully assessed protocols which are used to determine whether a new treatment should be used in treating childhood cancer. These protocols exist to determine if any, and exactly which, subclasses of a particular cancer may benefit from a particular treatment regime. The drive for this type of controlled treatment is the well being of the patient. In some countries medical services are driven by financial gain. Procedures are tried in the hope that a hospital can claim a miraculous treatment.

Unfortunately in some cases the choice of trial patients for the treatment may be biased. The choice of trial patient may be biased towards a subclass within the illness which stands a better chance of survival in the hope that the flood of subsequent patients based on that data will bring large financial rewards. In some cases, after a lifesaving treatment has been announced, the children who are subsequently treated do not fall into the correct subclass and should not be receiving the new procedure. There is a very real need to be objective about the claims made for new treatments which have not been widely tested.

There is also a need to assess the benefits of experimental treatment. Treatment of a terminal child should not be a case of survival at any cost. Time is not a good yardstick. Quality of life is paramount. In my opinion three months of quality life far outweighs a year of further protracted intense treatment and pain.

These words may seem distant and lacking emotion. They are not. When you have watched the costs incurred by chemotherapy on your own and other children, you realise that there comes a point where it is not practical nor realistic to extend treatment to the bitter end. You are doing the child no favours and ultimately you do none for yourself, although it may not appear that way at the time. It is a far far harder decision to accept the reality than to continue with treatment until death.

Sara and I had lived under the shadow of childhood cancer for many years. We had seen the devastation caused by the disease and treatment alike. I had read a lot about cancer, its treatment and genetics in general. We were honest with ourselves and knew what we were facing. We had no illusions.

Sara and I had talked about 'Doctor Shopping' years before Max became terminal. We agreed then and we agreed at the time of taking the decision. There would be no futile last dash and we would not take Max to his last days with interminable treatment.

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