That is the conclusion of the Kings Fund's report on the case of Jaymee Bowen. Of course it is hard to disagree with the idea that there should be more information about the way the National Health Service reaches its decisions. In its fifty years of existence the NHS's rationing of health care on clinical grounds has been, mostly, accepted but not comprehended. An educative process might indeed improve public understanding of the more unpalatable decisions; it cannot answer the crucial question of what body should be charged with making these most difficult choices in the first place.
The case of Jaymee Bowen revolved around whether the Cambridgeshire Health Authority, on the advice of doctors, was right to refuse to spend about pounds 75,000 on a second bone-marrow transplant for her cancer. They judged that it had only the very slimmest chances of success. But there was an alternative opinion available which Jaymee's father naturally pursued. A private doctor agreed that the chances of ultimate survival for Jaymee were low, but thought that she would live longer and that the operation was thus "worth it". In the end the matter was decided by the courts, who agreed with the authority. An anonymous donor paid for the treatment to be done and Jaymee lived for another year or so.
The controversy arose because medical opinion diverged. It became acute because of the cost of the treatment. Circumstances were complicated by the rivalry between the two camps of doctors, who sometimes appeared to treat the case in a political rather than a clinical fashion. Medics are, after all, as prone to factionalism as any of us.
The important question is what is the best forum for the arbitration of the difficult, exceptional cases like Jaymee's. A court of law cannot be ideal. But neither is the "court" of public opinion. The patient or the patient's close family cannot be the ultimate arbiters: they will always look to any hope, even if it is not a realistic hope. Such emotive, complex and technical issues demand that the debate be carried out privately and deliberatively by competent people who enjoy the confidence of all those involved. It must be a high and independent body specifically charged with reaching a medical consensus. But the final decision about the commitment of public resources must remain with health service managers, who ought to be accountable to the public. Given the pace of the development of new, expensive drugs and procedures there will be more and more cases like Jaymee. Of course, as the Kings Fund says, health service practitioners should make clear the reasons for the decisions they take. But if that system is to work well we need also to confront the emotional impulse that every treatment, however expensive or unproven, should always be provided by the NHS.Reuse content