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On "humility": the limited effect of disability.

To the Editor: We were disappointed that John Freeman concluded, based on two anecdotal reports, that he should not provide life-sustaining treatment to some newborns with disabilities ("On Learning Humility: A Thirty-Year Journey," HCR, May-June 2004). Early in his essay, he acknowledges the uncertainty of medical prognosis and the uncertainty of family and individual adjustment to spina bifida. However, by the end of the article, he appears to favor non-treatment for some newborns with spina bifida. While he acknowledges "the depths of the biases and prejudices that underlie (his) personal ethics and (his) decisionmaking" and the limitations in understanding "other people's quality of life," we encourage Dr. Freeman to reconsider his views and evaluate the research literature on how impairment, disability, and handicap affect quality of life.

A recent study of young patients with spina bifida found no linear inverse correlation between quality of life and level of disability, as measured by daily activities, functional abilities, and walking ability (Padua et al., "Health-related Quality of Life and Disability in Young Patients with Spina Bifida," Archives in Physical Medicine & Rehabilitation 2002). In fact, in this sample, patients with "low disability" reported lower quality of life than patients with "high disability." How then can the medical and functional Factors translate into an estimate of an individual's quality of life with spina bifida? Moreover, the authors suggest that parents greatly influence the child's quality of life, particularly in the emotional domain. This suggests that the physical manifestations of spina bifida may not be as important to quality of life as the individual, familial, and social reactions to it. These findings were supported by K.J. Sawin and colleagues in their work with adolescents with spina bifida, and by T.C. Edwards and others in their work with adolescents with perceived disabilities. Similarly in studies of adults with disabilities, the participants judge their quality of life to be good, on average.

Societal attitudes about people with disabilities need to change. Quality of life is a complex, multiply determined phenomenon, and it is dangerous to base one's perception of another's quality of life on a few casual conversations. We encourage Dr. Freeman, given his life-long commitment to children, to reconsider his conclusion.

Teresa A. Savage Kristi L. Kirschner Rebecca Brashler Debjani Mukherjee Center for the Study of Disability Ethics Rehabilitation Institute of Chicago

Freeman replies:

I would like to thank the authors of the letter for calling attention to my article. They write that at the end of the article 1 appear to favor "non-treatment of some newborns with spina bifida." Initially I was convinced of treatment for all. Through my early years of practice I became increasingly paternalistic and dogmatic in those beliefs. However, toward the end of my journey, I have questioned the correctness of my opinions. After my discussion with the two patients I was even less sure that I knew the answer to the question of whether to treat or not to treat.

Two patients do not make a survey, but they can raise concerns and make one re-think one's opinions. As the Letter states, disability does not necessarily correlate with quality of life. Family and social reactions clearly influence quality of life for children with disability, but as the two young women to whom I spoke suggest, families do not reliably determine quality of life, as I once thought. My journey led to increasing concerns about my paternalism. I no longer advocate treatment for all; nor do I advocate no treatment. Rather, I call for more thoughtful questioning of our recommendations to families. I would like to re-state my commitment to children with disabilities, and particularly to those with spina bifida. I just am no longer happy about what I and their families may be committing them to.
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Title Annotation:letters
Author:Savage, Teresa A.; Kirschner, Kristi L.; Brashler, Rebecca; Mukherjee, Debjani; Freeman
Publication:The Hastings Center Report
Article Type:Letter to the Editor
Date:Nov 1, 2004
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