Healthcare rationing—are additional criteria needed for assessing evidence based clinical practice guidelines?

In 1995 the case of “Child B” reached the headlines of British newspapers and stirred public debate about the decision to withhold a second bone marrow transplant from a child with acute myeloid leukaemia. 1 2 The decision was based on the weakness of scientific and clinical evidence of the treatment's efficacy. It was also argued that the decision was in accordance with guidelines for patient selection that were already in place for such specialised treatment. A central issue is why judgments such as this are not perceived as legitimate, even when they are based on clinical guidelines. The explanation may lie partly in the fact that the guidelines used have not been developed through a process considered as legitimate. Why should the patient, her parents, or the public accept some little known guidelines developed within the closed communities of medical experts? This issue is valid for all types of clinical practice guidelines. In this article, I examine guidelines as a mechanism for rationing and argue that this mechanism can be improved by involving the patient and the public.