Abstract
Health-related quality of life measures aim to assess patients’ subjective experience in order to gauge an increasingly wide variety of health care issues such as patient needs; satisfaction; side effects; quality of care; disease progression and cost effectiveness. Their popularity is undoubtedly due to a larger initiative to provide patient-centered care. The use of patient perspectives to guide health care improvements and spending is rooted in the idea that we must respect patients as self-determining agents. In this paper I look at the two main orientations to quality of life measurement: standardized and individualized measures. I argue that while these measures are attempts to provide for patient self-determination, they both fail to do so. In their place I suggest a new approach which overcomes their respective difficulties: a dialogic approach.
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Notes
For characterizations of the notion of quality of life and welfare see Griffin (1986), Sen (1993), Nordenfelt (1993) and Sumner (1996). The concern of these authors is whether quality of life or welfare is ‘subjective’ or ‘objective’; related to happiness or capabilities or preferences. In this paper I am less interested in how we should define quality of life and welfare than whether the quality of life measures that clinicians already use promote self-determination. Indeed, as I argue in other work, I think the meaning of quality of life can only be determined dialogically and in an open-ended, developmental way.
The most recent aspect of healthcare to be affected by patient-reported outcomes is hospital compensation. See NHS (2008, pp. 41–42).
For a different interpretation of Kant and the importance of choice see, O’Neill (2002).
To be sure, some standardized measures of health-related quality of life combine functional assessments with questions regarding personal satisfaction and health perception. But in standardized measures answers to the latter kinds of questions cannot wholly override the results of the former although they are often taken into account. The Short Form-36 (SF-36), for instance, gives questions regarding satisfaction and health perception the same priority as functional ones.
For instance, giving people the right to vote, but only placing one person or party on the ballot; giving women the right to make choices concerning their lives, but making it materially difficult for them to work outside the home.
Amartya Sen has recognized this point with respect to the capabilities approach to quality of life. For his discussion of the topic see, for instance, Sen (1999).
Ron Amundson makes a similar point in Amundson (2005).
On the contrary, the inability to bear children has historically improved men’s quality of life and we could argue that this too is the result of certain notions of the good that prioritize independence, detachment and individuality.
Dieter Birnbacher also raises a similar point (Birnbacher 1999). His idea seems to be that by taking an individual’s assessment of quality of life at face value we avoid evaluative bias and thus individualized measures are independent of social and cultural ideals. Part of what motivates this point is Birnbacher’s conviction that quality of life outcomes ought to be understood descriptively—we ought not attempt to evaluate them. As a result he is not concerned with the social and cultural factors that influence respondents’ answers. Because I will argue that evaluating quality of life outcomes is part of what is required to promote self-determination, I am concerned both with evaluative bias and, as I discuss in this section, the social and cultural factors that frame respondent answers.
On a dialogic account of quality of life research, it is not the job of the researcher to pronounce what is or is not a good quality of life. Rather it is her job to further our understanding of quality of life. Even when researchers criticize certain accounts of a good life, for instance FGM, these criticisms would ideally occur in the form of further research that challenge proponents of FGM to reflect on the coherence of this view.
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McClimans, L. Towards self-determination in quality of life research: a dialogic approach. Med Health Care and Philos 13, 67–76 (2010). https://doi.org/10.1007/s11019-009-9195-x
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DOI: https://doi.org/10.1007/s11019-009-9195-x