Every so often something reminds me that medicine, as it is now practised, engages in what the late medical critic Dr Robert Mendelsohn once referred to as “holy war on the family”.
This latest reminder came from Paul Clark of Cardigan, in an update about his 10 year old daughter Sarah. Sarah had leukaemia, and Paul and his wife wished to pursue alternative treatment for her, but they were being bullied by their oncologist at every turn.
Any time the Clarks had challenged an aspect of Sarah’s treatment, the doctor drew in his horns and charged. At one point, when he thought (wrongly) that the Clarks were subverting his decisions, he had hauled them in for a meeting and made it clear that if his treatment decisions weren’t carried out, he would get a court order making Sarah a ward of the court, thus removing custody from the Clarks and giving himself a free rein to administer orthodox treatment in this case, powerful doses of chemotherapy.
The Clarks soon learned that the most politic response was overt compliance, but with covert measures to minimise the damage of the powerful drugs. At our suggestion, they had consulted with Dr Patrick Kingsley of Leicestershire, known for his highly successful, holistic approach to cancer. Kingsley provided them with a regime for Sarah that was designed to minimise the effects of the chemo. Under this programme, Sarah was thriving and seemed better able to withstand the effect of the powerful drugs being pumped into her. The Clarks were encouraged. They were convinced the battle against cancer was won.
Despite Sarah’s progress, her oncologist insisted on one final high dose blast of chemotherapy. The Clarks were against it, but remembering his earlier threats, once again they caved in.
Sarah was extremely weakened by this final treatment. Nevertheless, the hospital sent her home, says Paul, because her temperature was normal. Many hospitals rigidly adhere to the ludicrous practice of discharging any chemo patient who registers a normal temperature, no matter how poorly they appear in every other regard.
In a few days, when Sarah had deteriorated further, Paul phoned the hospital and begged them to readmit her. Again, no one listened to him. Finally taking matters into his own hands, he phoned an ambulance and rushed Sarah to hospital.
It was too late. The high dose chemo had basically left Sarah without an immune system. She had caught a simple infection, and with no resources to fight it, she slipped into a coma and died.
Sarah’s story is not simply about how doctors underappreciate the danger of peripheral infection to patients undergoing chemo. If patients must have this type of murderous treatment (and there is much good evidence to argue against it), at the very least they should be kept in “clean rooms” in hospital to minimise their chances of dying from a cold.
The moral here is about the right of parents to self determination on health care issues involving their children. Backed by the power of the court room and the threat of custody, doctors now possess a greater right to make decisions about the health care of minors than parents do.
There might be an argument to support this in extreme instances if medicine could offer a sure fire cure, but not when the treatments are nothing short of experimental, as they so often are in cancer. Unless Sarah’s oncologist could virtually guarantee that he could cure Sarah, he had no right to force them into subjecting her to a treatment that they and she didn’t want.
Medicine of whatever persuasion is not a certainty, but a belief system, like a religion. Without certainty, it should never be placed above the will of the family.