People with a health condition, chronic illness or disability — even people like me, who have a child with a disability — are all too well acquainted with the concept of quality of life. These three words pop up constantly: in doctors’ offices, in literature on particular health issues, in everyday conversations. Like electrons around the core, they buzz around our intimate dealings with dependency, forming a tacit system that governs the way we conceptualize the fragility of our existence. However, the concept seems quite elusive: it appears both as a noble goal and an insidious criterion in medical practice; it serves as an all-purpose term for how well individual people are doing, and also as a means of rating how a society is functioning. What exactly is quality of life?
History: 50 shades of progress
The concept rose to prominence in the 1960s when post-WW2 society’s love affair with material progress began to profess some dystopian streaks. Social scientists and interested parties from the technocratic realm aimed to formulate a response to the sharply protruding disparities between technological and economic advances on the one hand, and various social issues on the other. There were many areas of concern. Alienation, civil unrest, cults, crime rates, drug abuse. Just like in today’s imaginarium of impending doom, overpopulation and pollution were prominent among the mainstream’s hot topics. Quality of life was thus a response to the disillusionment of pseudo-affluent society, formulated as a truer aim for socioeconomic development, often reduced to happiness stemming from financial and social stability, health-related wellbeing, education, cleanliness, resources, etc.
From there on, the concept split into two streaks: one gave rise to various measurements of social indicators to be piled on the desks of benevolent technocrats, while the other gradually assumed the form of a medical decision-making tool known as health-related quality of life (HRQoL).
Today, the first streak is present in numerous forms of general population measurements. For instance, those provided by OECD, World Health Organization, and the European Union all assess factors like education, wealth, physical safety, natural and living environment, etc.
In the “first, do no harm” realm, the concept started gaining momentum in the 1970s. Some authors bluntly advocated for abortion and sterilization towards improving the overall quality of life, while others shared their concerns about low-income families birthing children with disabilities and other “dysfunctions.” The lives of people with Down syndrome, spina bifida, dementia, diabetes, and mental health issues were unblinkingly framed as “failures of success.” The fact that technological breakthroughs in medicine apparently resulted in an uncontrolled number of people whose lives depended on healthcare troubled many.
Medical practice entails hard decisions, especially when it comes to the issue of prolonging patients’ dying. The dilemma of whether to proceed with aggressive and painful treatments or commence palliative care instead has been around at least since the Medical Renaissance. The Catholic Church articulated a sophisticated doctrine of ordinary and extraordinary means of care, the latter referring to treatments that imply “physical or moral impossibility” for the patient. The proponents of health-related quality of life sometimes brushed against these issues when spreading out their rationale. However, the concept of quality wormed its way into the broader practice by simultaneously appealing to empathy and implying a tolerance threshold for biomedical abnormality. So it quickly became a general framework for tackling the purpose of a medically supported life, which is very different from the purpose of clinically prolonged dying.
Practice: scores that score you out
Not long after the rise of health-related quality of life, the construct became formulated as an explicit numerical devaluation of a care-requiring life, packed and sold as “quality-adjusted life years,” abbreviated as QALY.
Today, QALY serves as a decision-making tool for the allocation of health-related resources. This bizarre apparatus bends the time-space continuum to shrink a life year of people who require care in order to survive. It’s very intuitive: if a technology (medication, treatment, devices) is predicted to give you one additional year of life at total wellness, your life is then one quality-adjusted life year long. But all 365 days of your year may not amount to one quality-adjusted year if your wellness during this period has not been absolute. In that case, your year is not a healthy person’s year – it gets amputated into a decimal between 0 (dead person) and 1 (absolutely healthy and utterly happy person). As the year gets shorter (for instance, your year might be 0.36 of an ideal persons’ year), the less chance there will be for a specific health technology to enter into general practice.
QALY numbers are first generated via patients’ confessions collected through various questionnaires, combined with monitoring in clinical trials, and are then grouped into databases published for the decision-makers’ use. From there, QALY numbers enter a formula of cost-effectiveness for a particular health technology, and the result is compared against a financial threshold of tolerable costs. This threshold is set arbitrarily, in regard to the country's health budget, its social policies and socioeconomic politics, etc.
Generally, health-related quality of life, along with the tools that yield its scores, has often been promoted as giving the patients their voice. But this voice is heavily pre-articulated, containing a clearance of the social bias account. There are many measurements and models. For example, the SF-36 questionnaire and the Health Status Index (HSI) produce scores depending on how people function, feel, socialize, move, etc. They all contain an implicit assumption that a limited scope of activities necessarily lowers the quality of life. In addition, the unassessed but pre-existing state of the environment – lack of resources, lack of accessibility, lack of available treatment, lack of acceptance, lack of support, pervasive ableism and ageism, including internalized discrimination – constitutes an enormous but normalized slice in the pie chart of the reasons why people might score lower, and the scores largely differ in relation to these factors.
From the standpoint of disability, people’s own voices are used as amplifiers of bias and stigma; this doubly predetermined lowering of scores demonstrably diminishes the chance of people receiving bias-free or affordable care — which means that this tool makes a bad environment even worse. Ultimately, with many iterations of the formula that contains the impli