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 implicit constants of unaddressed biases and obstacles, the entire process can only result in a limited access to life-saving care and a disregard for accessibility.
On top of all of this, there also exists a blatant disregard of the opinions of people with disabilities that do not fit the narrative. For example, 99% of people with Down syndrome state that they are happy with their lives, and yet doctors push for their termination in the name of quality of life. This leads to a common trauma among the parents of children with Down syndrome – common, but far from being justly documented in the research papers arena. Disability advocates have a long record of pointing out their satisfaction even in the face of pain and discomfort, and despite tremendous social obstacles, with little or no impact on quality of life calculations.
All these issues demonstrate that the QALY apparatus results in an almost non-negotiable standardization of the medical model of disability, enshrining it within the decision-making processes from top to bottom, totally putting out of action the social model of disability that minds the intricate way in which the society constructs and governs the concepts of disability that hover over people’s impairments.
It is undeniable that some kind of rationale will always be required when it comes to distributing health-related resources, but why not focus on quality of care rather than on “quality of life”? From the very beginning, the quality of life construct has been deployed to shift the system’s responsibility for providing quality care onto care-requiring people themselves, according to their biomedical “quality." The utility of intervention or treatment will remain a factor, but less discriminatory tools for addressing it have already been proposed.
Ideological foreground and background: utilitarianism and biopower
Today, there is an entire array of lethal medical practices associated with quality of life, revealing it as a loose cannon of systemic bias: pressure to abort children with disabilities, denying medical care to congenitally affected infants, denying organ transplantation to disabled babies, neonatal euthanasia, giving unconsented do-not-resuscitate orders, denying medical care to disabled people, unconsented euthanasia.
Ever since quality of life gained traction in the medical sphere, it has been enmeshed with the tropes of “needless suffering” and “maximization of quality." Both of these concur with the core principles of utilitarianism, a moral doctrine bent on achieving the greatest happiness for the greatest number of people. Happiness is defined as pleasure or lack of suffering.
So the pursuit of utilitarian aggregate happiness via hedonic calculuses finds its medical counterpart in the production of aggregate biomedical quality via assessment tools, both revolving around the “minimization of suffering." However, in these epistemologically limited frameworks, suffering has seldom been analyzed minding how human beings relate to, reflect on and process suffering. Both are marked by substantial disregard of everything we know or intuit about human ability to find meaning and joy despite or precisely because of our suffering. Moreover, when it comes to unavoidable or pre-given circumstances such as imperfect health or impairment, deeper analysis reveals one of the most distinct blind spots of these approaches: human beings often get equated with suffering, and their existence with moral wrong. Meaning: humans are constituted as subjects of quality through reduction of the sufferers to suffering objects. This objectification is precisely why medical rendering of utilitarianism results in such lethality, from prenatal eradication to systemic discrimination in other stages of life.
Both frameworks are also epistemologically incapacitated to address the issue of how suffering assumes its semantics through various vectors of power that govern the processes of forming the expectations from our bodies and minds. In other words, how we construct disability and create notions of suffering through bias, stigma, ableism and ageism. It’s ironic, almost to the point of travesty, that utilitarian pop-stars (for instance, Richard Dawkins, and the slightly more sophisticated, but equally careless Peter Singer) have caused palpable suffering throughout the disability community.
What is the ultimate purpose? It is not to control the costs of medically defined quality – that’s just part of the mechanics. It is not to maximize happiness or minimize suffering – that’s just a smoke screen. In these calculuses, the ultimate bearer of happiness/quality is no one, anyone and everyone: social order itself. This insight empowers us to see these frameworks for what they are, and for that, I’ll have to borrow some more from Foucault: these are modes of biopower. This is power over people’s lives and bodies: it either shapes, upholds and invests in life, or disinvests in it to the point of death, according to the criterion of systemic suitability. Individuals are not simply subjected to biopower, they also produce and channel it. This is not some empty theorizing, it’s very concrete. Parents who terminate pregnancies because of disability, persons who request assisted suicide, people who slap do-not-resuscitate orders on the beds of cognitively impaired persons, people who assess others to see if the quality of their life is sufficiently poor for euthanasia, random people who offer pity on disability, philosophers who make up criteria of intraspecies moral statuses, and so on.
Pleading for equality will not do against the workings of biopower; it subverts the relevance of equality in at least two ways: by dispersion of lethality to individual decisions, and by creation of sub-groups that possess different moral statuses. Pointing out the original ethics of medicine will not do – as we speak, it is being rewritten to adjust with the times. Laws are already being bent to the production of “vital population” by processes of absolute exclusion at both poles of human life.
However, of this I am certain: the path to liberation begins by dissolving the notion of the functional uniformity of humankind. Yes, we have relevant abstract traits, but we all embody them to various degrees, while our mutual dependency actualized in the culture of justice allows for the widest possible range of individual modes of functioning. The imaginary line between biomedical normality and abnormality has to be erased if we are ever to achieve a culture that provides radical acceptance instead of controlled inclusion. This path will be paved by honoring “not self-sufficiency but self-determination, not independence but interdependence, not functional separateness but personal connection, not physical autonomy but human community”, as Longmore brilliantly put it. Then we will be ready to handle someone else’s mode of existence instead of evaluating the quality of other people’s lives.