Political and ethical implications of using quality of life as an outcome measure

The issue addressed by this article has been the legitimacy of using quality of life as an outcome measure with the potential for use as a means of allocating health care resources. Serious problems that arise include the definition and measurement of quality of life and the related ethical dilemmas of sanctity of life versus quality of life, individual versus aggregate good, and autonomy versus paternalism. Two core questions remain: How do we use the concept of quality of life for the benefit of individuals and society without compromising the integrity of either? How do we make ethical decisions for the aggregate good without violating the rights of individuals and without devaluing life, either by forcing someone to live who does not want to or by refusing treatment to someone who wants it? Clinicians and researchers need to be alert to the purpose for which quality of life data are being gathered to ensure that appropriate measures are being used. Forrow et al argue that an "important barrier to the use of decision analyses for individual patients lies in the difficulty of developing reliable and quantifiable measures of patients' preferences for various treatment outcomes--including differences in mortality or life expectancy, various kinds of morbidity, burdens of taking medications, economic costs, and so on." If these limitations could be overcome, quality of life might hold some promise for individual clinical decision-making. The lack of consensus about its definition and the problems inherent in its measurement render quality of life a poor choice as a criterion for decision-making regarding health policy. Clinicians concerned about the issues raised in this article are encouraged to identify the resources available to help them examine the issues. Useful resources include other interested providers, ethics committees, risk managers, chaplins, social workers, and codes of ethics, standards, and position statements. The Oregon model should be studied carefully since it may provide a guide for other states and the federal government. Forums should be organized at multiple levels involving nurses, physicians, other health care providers and the general public. We should encourage careful inquiry and judicious consideration of findings. We should be aware of the political scene and the research scene to guard against the potential misuse of study findings in the establishment of public policy. We should seek information for ourselves and our patients; we should provide the highest quality of care we can that is aimed at providing patients the possibility of fulfilling their own goals for their lives.(ABSTRACT TRUNCATED AT 250 WORDS)