Disablism in a time of pandemic (Repost) – by Jackie Leach Scully
This blog was originally published on the IJFAB Blog on 1 April 2020. It is republished here courtesy of Jackie Leach Scully and IJ FAB.
The COVID-19 pandemic is currently accompanied by a parallel outbreak of bioethical and clinical ethical discussion offering guidance for the difficult decisions that healthcare professionals and others face as the pandemic develops. Right at the moment there is a strong focus on the ethics of triage. In countries affected by COVID-19, healthcare professionals are having or will have to decide which patients get access to life-saving critical care – in the case of COVID-19 that means intensive care beds and ventilators — when there is not enough for everyone in need. They want guidance on how to make those decisions in the most morally justifiable way. Just as much, patients, families and the general public want to know the basis on which such decisions are being made.
In all the published guidance that has appeared over the past weeks, one thing is disturbingly clear. Many of these resources have shown a worrying degree of prejudice against disabled people, or disablism. Protocols from Alabama and Tennessee have been namechecked here. While it is easy to see in these evidence of a straightforward disvaluing of the lives of people with disabilities – and at worst, the seizure of a golden opportunity to get rid of burdensome people – in reality something more complex is going on. It’s equally unacceptable, but understanding offers better ways of challenging it.
Three overlapping but conceptually distinct disablist assumptions critically endanger people with disabilities in a situation of clinical care triage. First, there are assumptions about the overall health status of disabled people; second, assumptions about disabled people’s quality of life; and finally, assumptions about disabled people’s social utility, which in fact only becomes relevant if there is confusion about the role it plays (or shouldn’t play) in critical care decision-making.
“…bioethics and medical ethics have dismayingly bad track records of oversimplifying the diversity hidden in ‘disability’ to the point of uselessness.”
As background, it’s important to recognise that most triage protocols use probable clinical outcome as the primary decision-making criterion. In essence this comes down to the likelihood that the treatment will save the life of a person who would otherwise not recover. Being able to recover without it, or being pretty certain to die despite it, are both reasons for not receiving treatment. When there are many people who are equally in need of and likely to benefit from a treatment in short supply, we attempt to refine the clinical criteria, ie to make them more stringent, always in order to identify the core of people most likely to benefit from treatment, in the fairest possible way. (‘Fairest possible’ begs a lot of questions, and several different principles have been suggested in the bioethical literature: I won’t go into them here.)
A key factor is a person’s background health status, because some underlying conditions are already known to significantly decrease the chance of recovery from the severe form of COVID-19 – including hypertension, cardiovascular disease, chronic obstructive pulmonary disease, and cancer. But disability by itself, however, often has no impact on health. People with visual and hearing impairments for example, or intellectual disability, can be just as healthy and therefore as likely to recover with treatment as anyone else. In other words, disability shouldn’t automatically be used as a proxy for compromised health.
What makes the ethical terrain here more complicated is that some disabling conditions do involve health issues that are relevant to chance of recovery – if lung function is affected, for example, or if long-term medication has led to seriously raised blood pressure. But even here, it is important to recognize that individual differences mean global rules (of the “no one with cystic fibrosis to be placed on ventilation” kind) could easily be unjust. This is important because both bioethics and medical ethics have dismayingly bad track records of oversimplifying the diversity hidden in ‘disability’ to the point of uselessness.
The second set of assumptions concern predicted longer-term quality of life. Although there is general consensus that critical care decisions should primarily be based on predicted outcome, in many cases the wording of guidelines leave it unclear whether considerations about quality of life are implicitly or explicitly being drawn in as well. And using predicted quality of life to make allocation decisions in a broadly disablist society generates a profound bias against people with disabilities. We know from abundant empirical evidence that people without disabilities tend to take it as a given that disability inescapably leads to life being worse, while disabled people on the whole rate their own quality of life as at least as good as anyone else’s. One reason for this discrepancy is the simple difficulty of projecting oneself imaginatively into a very unfamiliar kind of life, without experiencing different as lesser. Triage guidance that, even implicitly, draws on assumptions about the quality of the saved life is in danger of codifying an unarticulated belief that “they can’t actually enjoy life like that”.
The third issue is even more complex, because it involves both prejudice and a slippage of triage criteria. Major ethical tensions arise when decision makers start to reach beyond the likelihood of benefit to the individual and towards some idea of ‘social utility’, in other words how valuable that person, if saved, will be to society. Triaging by social utility is the shift that should probably concern us the most: it’s also the one most likely to be resisted by patients and families, and to cause moral distress in healthcare professionals.
Even this is complicated, because many people nevertheless agree that in disaster or health emergency it makes moral as well as practical sense to prioritise the care of frontline medical staff, because it benefits everyone to have them healthy and working again as rapidly as possible. In situations of massive social collapse, there will be arguments for prioritizing people who can offer other vital services as well. (Of course, this would not necessarily discriminate against disability: a disabled person with experience in engineering or food production would be more socially useful than, say, a professor of bioethics.) But the SARS-CoV2 pandemic is not social collapse; and there is no ethical justification for making critical care decisions on the basis of factors like profession, or personal circumstances, or assumptions about the productivity or value to society of a disabled person.
The assumptions I’ve discussed above (about disabled people’s health, quality of life, and social utility) are formed by a framework of ideas about norms. Disability activism and scholarship have helped to identify and challenge the powerful biomedical, cultural, political and economic forces that delineate what modern western societies consider to be normal for human form, function and behavior. Nevertheless, it’s clear that often the reasoning of the published guidance on triage has been shaped by unacknowledged norms and unexamined assumptions about life lived with disability and the ‘value’ (for want of a better word) of disabled people.
For example, the UK National Institute for Health and Care Excellence’s COVID-19 Rapid Guidance was released on 21 March 2020, recommended prioritizing critical care resources based on something called the Clinical Frailty Scale. The Guidance said that the CFS was used because it helped “to identify patients who are at increased risk of poor outcomes and who may not benefit from critical care interventions.” However, as patient groups and representatives quickly pointed out, the CFS’s categorization of different levels of frailty used criteria that don’t necessarily play any role in clinical outcome for COVID-19 or, indeed, in overall quality of life, and could mistakenly be applied to people with stable disabilities otherwise in perfectly good health. For instance, the Guidelines suggest using CFS level 5 or more as one factor in making critical care decisions: yet the description of ‘frailty’ at CFS level 5 would apply to many healthy people with disabilities, including people with learning disabilities, autism, cerebral palsy and so on.
In response to criticism, four days after the original NICE guidelines were released they were modified to note that “The CFS should not be used in younger people, people with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism” and that assessments should be individualised and holistic. This swift response is admirable. Nevertheless, these and other guidelines show a worrying lack of awareness that norms aren’t universal: that a lot of people who don’t fit the social norm of independent ability to dress, move around, or make autonomous decisions – whose dependence is more obvious than other people’s – are nevertheless healthy and lead flourishing lives that are no worse or better than anyone else’s.
Despite the last half century of progress in recognizing disabled people’s rights, and irrespective of what public and policy might say openly, these problematic responses are an indicator of our ongoing inability as a society to consider people with disabilities as equal members of the community, with equal human and civil rights, equal claims to citizenship, and equal moral agency. This fundamental inability has potentially catastrophic consequences for disabled people in the COVID-19 global health emergency.
- In all cases, critical care guidance should include not just the criteria for triage decisions, but explanation of the reasoning behind them
- Disability status should not be used as a simple proxy for health status
- Critical care decisions should be based on knowledge of an individual’s personal medical history, not on assumptions about background health status or quality of life (and preferably not relying solely on medical records, which are notoriously error-prone)
- Critical care decisions should be scrupulous in excluding considerations of broad social utility
- And critical care guidance should acknowledge openly that disabled people are to be treated as equally valuable and worthy of care as others.
Jackie Leach Scully is Professor of Bioethics and Director of the Disability Innovation Institute at UNSW Sydney.