In recent years a number of commentators have discussed the importance of measuring quality of life in health care. We want to know whether an intervention will help people to live better, not just longer, and whether some treatments cause more trouble than they are worth. New technologies promise wondrous benefits. But when millions of people have no insured access to health care, and when many others face increasingly stringent limits on care, technologies’ high costs require us to choose what (...) we should do from the broader universe of what we can do.The challenges to measuring QL are formidable. Researchers debate whether to measure general QL or disease-specific QL; whether to focus on functional status such as the patient's ability to walk and dress himself, or on the value people ascribe to that functional status; whether to seek the values of the general public, or to concentrate on people actually affected by a given disease or disability. (shrink)

The British National Health Service (BNHS) was founded, to quote Minister of Health Aneurin Bevan, to ‘universalise the best’. Over time, however, financial constraints forced the BNHS to turn to incrementalist budgeting, to rationalise care and to ask its practitioners to act as gatekeepers. Seeking a way to ration scarce tertiary care resources, BNHS gatekeepers began to use chronological age as a rationing criterion. Age-rationing became the ‘done thing’ without explicit policy directives and in a manner largely invisible to patients, (...) to Parliament, and to the public. The invisibility of the practice, however, violates the publicity principle that John Rawls and other philosophers believe essential to fairness. BNHS invisible age-rationing practices are thus a test case of the principle that fairness presupposes publicity; they raise the question: is it possible to preserve equitability in a system that uses non-public criteria to allocate scarce resources? To seek an answer, published data on access to end-stage renal disease (ESRD) treatment in Britain and the European Community (EC) are analysed. Among the findings are: that BNHS age-rationing acts as an excuse for denying care to those most likely to need ESRD treatment; and is, moreover, arbitrary and inequitable. It is further argued that no age-rationing policy can sustain visibility, and that, if the BNHS is to be fair to its patients, it must reform its present age-rationing practices, replacing them by a publicly visible, outcome-based rationing policy that rations either in terms of QALYs or triage categories. (shrink)