I recently attended my first AMS Phoenix Project Conference as a new grant recipient. It was a treat to be amongst a talented group of people who are collectively dedicated to infusing compassionate care into healthcare, and who are doing so from diverse perspectives. As someone who identifies as a critical researcher I was especially intrigued by some of the comments provided by speaker Arno Kumagai related to the problem of evaluating compassion. Dr Kumagai mentioned a somewhat disturbing trend in healthcare towards measuring compassionate care utilizing reductive approaches such as tick boxes or forced response questions on patient satisfaction surveys. He noted that surveys tap only surface knowledge and not the deeper knowledge we learn from engaging with patient stories. Moreover he suggested that clinicians would do well to shift the focus of our practices from solving problems and providing answers to posing new questions. Questions like “Who is the other in front of me?” and “How do I work for him/her?”
Resisting the tendency to reduce complex issues to simplistic measures is something that has held my interest for many years, particularly in relation to quality of life (QOL) assessment. I have a new book coming out in January (Gibson 2016) in which one of the chapters is dedicated to examining how the concept of quality of life is used in health care, particularly in regards to measurement. My field of rehabilitation has always been focused on enhancing well-being rather than curing disease, and in contemporary practice has rather enthusiastically embraced quality of life measures in research and the clinic. I argue in the book that conceptualizations of quality of life are so diverse that the concept has been rendered almost meaningless. Moreover there is a dangerous conflation of function and quality of life that reproduces some of society’s most entrenched assumptions regarding disability.
Measures of quality of life (and/or ‘health related quality of life’ and ‘health status’ measures) in some form or another assume that function is either equivalent to QOL or is one of its major determinants. So, for example, use of a cane will produce a lower QOL score even though, depending on the circumstances, walking with a cane may be more efficient and more enjoyable than independent walking (Amundson 2000; Metts 2001). The SF36 provides another example. This is a well-respected, “valid and reliable’, and pervasively administered measure wherein the ability to climb stairs, walk, carry groceries, or dress oneself all produce higher scores indicating a better HRQOL. The measure thus both relies on and perpetuates a view that life quality is always and necessarily reduced because of disability. This is an enormous and unsubstantiated assumption; and one that signals to disabled people that healthcare professionals and systems consider their lives to be somehow lesser and of poorer quality. Measurement tools and their use thus perpetuate the view that life quality is directly determined by degree of impairment. In so doing they fail to acknowledge the interconnectedness of life quality with myriad other aspects of life such as personal relationships, security, expectations, spirituality, self-worth, emotional wellbeing, socioeconomic status, and/or social inclusion (Amundson 2000; Koch 2000).
Quality of life measurement has exploded in the last several years. Myriad tools have been devised to measure the quality of life of populations, groups and individuals; and quality of life arguments are advanced in momentous decisions such as withholding or withdrawing ‘futile’ medical treatments. These developments have not only changed research and health care practices, they have helped structure how we think about what it means to be ‘healthy’ and ultimately what it means to be human (Gibson 2016; Rapley 2003). Quality of life is a useful concept that has contributed to moving healthcare away from a disease model but QOL judgements are always necessarily relational, reproducing social ideas of what constitutes a good or deficient life. Given the complexity of life quality, it is crucial that we tread very carefully with measurement and its interpretations. As Annemarie Mol (2008, p.75-6) notes:
‘It is important to do good, to make life better than it would otherwise have been. But what it is to do good, what leads to a better life, is not given before the act. It has to be established along the way. It may differ between lives, or between moments in a life.’
Doing good is (or should be) the business of healthcare. It encompasses both the delivery of compassionate care and the intended goals of care. Both Mol’s quotation and Dr Kumagai’s remarks remind us that we cannot know in advance how to act towards the other. This makes measurement a tricky business indeed. Thus while I do not suggest s complete abandonment of QOL measures, I would suggest that we stop assuming that they capture or represent the ‘quality of life’ of any person or persons. We would do better to limit our discussions to the items, scales, and domains and call them what they are i.e., function, symptoms, activities of daily living etc. Such a move ceases to assume a direct relationship between individual capacities and the goodness of a life. Nor would I suggest that we discard the concept of ‘quality of life’, but rather might use it more as a ‘sensitizing concept’ to guide the design of programs or interventions, but one that would need to be unpacked, specified, and researched in each application. This I think is Annemarie Mol’s point and one that I would venture aligns with the goals of compassionate care.
– Barbara Gibson, December 2015
Barbara Gibson is the Bloorview Children’s Hospital Foundation Chair in Childhood Disability Studies; Associate Professor, Department of Physical Therapy, University of Toronto; and Senior Scientist, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital
Amundson, R. 2000. Against normal function. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 31(1): 33–53.
Gibson, BE. (2016, forthcoming) Rehabilitation: A post-critical approach. Boca Raton (United States): CRC Press
Koch, T. 2000. Life quality vs ‘quality of life’: Assumptions underlying prospective quality of life instruments in health care planning. Social Science & Medicine 51(3): 419–427.
Metts, R.L. 2001. The fatal flaw in the disability adjusted life year. Disability & Society 16(3): 449–452.
Mol, A. 2008. The logic of care: Health and the problem of patient choice. New York: Routledge.
Rapley, M. 2003. Quality of Life Research. London, U.K.: Sage.
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