ABSTRACT
The chapter starts by explaining the somewhat unfamiliar idea of guidelines as tools for rationing. Healthcare rationing is an issue being increasingly discussed within the field of ethical theory. The conflict between the rights of individuals, clinical autonomy and the recommendations given by guidelines is illustrated by a clinical example: the case of guidelines for reducing the risks of cardiovascular disease. Such guidelines have the potential for improving practice and saving lives, but current guidelines typically also exclude some patient groups from such benefits. Next, the ethical implications of implementing coverage exclusions through clinical guidelines are examined. Coverage exclusions might violate some fundamental principles of medical ethics and health law. In particular, coverage exclusions limit personal autonomy (for the patient), clinical autonomy (for the health carer), and they might be in conflict with rights to health care, either seen as moral or legal rights as enacted in many countries’ healthcare laws. Next, the chapter includes a broader perspective. From the perspective of distributive justice – within systems with an acknowledged obligation to provide universal access to healthcare for all its citizens (such as the NHS) – exclusion of marginal benefits may be required in order to secure access to more important services for others. From this perspective, rationing might be seen as fair, even if this implies some infringements of individual autonomy and rights. The challenge is how to evaluate practices from a normative and political perspective: the use of guidelines as rationing tools must exclude only benefits of very low priority – and such practices must be perceived as fair by the general public. This raises the issues of legitimacy and accountability. The ethical framework of Accountability for Reasonableness, developed by Norman Daniels and James Sabin, is explained in detail, and its relevance for guidelines is outlined. Finally, the practical implications of applying this ethical framework for the design and development of practice policies are illustrated with reference to the work of the National Institute for Clinical Excellence (NICE). It is argued that guidelines used as tools for excluding marginally beneficial treatment are only legitimate if the criteria for exclusion are made explicit, reasons for exclusion are given, and a reasonable and transparent process decides the threshold of exclusion.
