On November 2, Newsweek published an excellent op-ed by Matt Valliere, Executive Director of the Patients Rights Action Fund (PRAF), entitled The Brutal, Tragic, Consequences of Quality of Life Judgements. Though PRAF’s mission is focused on opposing assisted suicide laws, the op-ed does an uncommonly good job discussing other discriminatory and harmful medical practices that are largely based on quality of life judgments and devaluation of people with disabilities.
The article begins by describing the Alta Fixsler case and the role of QALYs and DALYs (Quality/Disability Adjusted Life Years), specifically in the UK.
Alta Fixsler’s death was a brutal tragedy caused by ableist, utilitarian assumptions about a young girl’s “quality of life” by non-disabled people. The removal of life-sustaining care from a child with disabilities, based on prejudices about her disability, is unconscionable. Hospitals in the U.K. deny care to some children in the name of “saving” them from a fate worse than death. . . .
The U.K. attacks the dignity of certain people’s lives through the Quality and Disability Adjusted Life Years (QALY/DALY) tool. Using this metric, health officials argue that people like Alta no longer have lives worth living, and death is preferred. The real-world consequences mean that a person with expensive treatment or care needs will not be covered for treatments, based on the idea that a year of his or her life is worth less than a year of an otherwise non-disabled person’s life.
Valliere notes that this better-dead-than-disabled attitude is not unique to medicine:
This prejudice is not unique to medicine. It is immortalized and even celebrated in movies like Million Dollar Baby and Me Before You, in which people with disabilities are portrayed as heroic for killing themselves, because they “save” themselves, their family and society from the “burden” of their disabling conditions.
The article ties these prejudices to the infamous Michael Hickson case involving a Black and disabled man denied treatment for COVID, discriminatory Crisis Standards of Care, and the ongoing debate over public policies for assisted suicide. To read the full op-ed, please go here.