Quality of life: does measurement help?

Abstract

‘Quality of life’ is a very frequently applied concept nowadays. One may doubt whether everyone has the same connotation in mind while using this expression and why ‘quality of life’ attracts so much attention. Is the idea a very old one or is it a new and noble value? It is argued here that changes such as in the number of aged people and of chronically disabled people, combined with spectacular developments in medical technology and with a rise in knowledge and assertivity, created an increased awareness of ‘quality of life’ and its interaction with medicine. Moreover, limitations to budgets and technological developments trigger an interest in new arguments. ‘Quality of life’ plays an increasing role in all sorts of medical decisions, be it in policy decisions or in individual clinical decisions, be it formally assessed or implicitly weighted. A number of examples is briefly described to illustrate the very broad and diffuse use of quality of life as a criterion. Subsequently we have tried to operationalize the concept on 4 levels: macro, meso, personal and physical. The macro level applies to the meaning of life in a society; assessments of quality of life play a role, for instance, in discussions on euthanasia and in political decisions on medical investments. Examples of the meso level are the hospital, with its internal processes and its ties to the rest of the world, but also the patient in his social environment. On the personal level the individual's frames of reference on health, illness, future, pain and hope - both of the patient and the doctor - are being considered. It is argued that legitimation of important decisions, investments and interventions requires measurement of quality of life in an objective way and on different levels. Quantifying quality, however, appears hardly feasible. Therefore ‘quality of life’ is frequently measured at the fourth level only, the level of physical activities. Confining measurement to the measurable induces the question of whether it really is ‘quality of life’ that is being quantified. Still, results from such measurements can be of help in decision making. Who decides in clinical situations and in what way should ‘quality of life’ be involved in decision making? In one solution, perhaps the old fashioned one, the doctor takes all responsibility, possibly from a paternalistic ideal. Conversely, should the doctor behave in a completely non-directive way, full autonomy is given to the patient. We advocate a third way, where mutual respect of patient and doctor may enable open consideration of objective and subjective elements of ‘quality of life’ so as to give it a central place in clinical decisions.