Disability rights and disablism in a time of pandemic

Disability Innovation Institute at the University of NSW

Jackie Leach Scully

Professor of Bioethics and Director, Disability Innovation Institute UNSW

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 are facing as the pandemic develops in different countries, including of course Australia. At the moment there is a strong focus on the ethics of triage, although this is far from the only ethical issue that will have to be faced. In countries affected by COVID-19, healthcare professionals are confronted with deciding which patients get access to life-saving critical care – in the case of COVID-19 that currently means intensive care beds and ventilators, later on perhaps antiviral treatment or vaccine – when demand for these resources exceeds supply. Frontline medical staff 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 a situation like a pandemic, healthcare resource allocation generally follows a utilitarian and egalitarian logic: trying to be fair by maximizing the good for the greatest number of people, while remaining committed to equality. Many of the critical care guidelines that have appeared in recent weeks appear to show a worrying degree of prejudice against disabled people, or disablism. While it is easy to see in these evidence of a straightforward disvaluing of the lives of people with disabilities, in reality something more complex (but no less unacceptable) is going on. I think there are three overlapping but conceptually distinct disablist assumptions at play. Together, they critically endanger the rights of people with disabilities in a situation of clinical care triage.

Disablist assumptions

First, there are assumptions about the overall health status of people with disability; second, assumptions about their quality of life; and finally, assumptions about social utility, which in fact only become relevant if there is also confusion about the role it plays (or shouldn’t play) in critical care decision-making.

The majority of 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, always in order to identify the core of people most likely to benefit from treatment, in the fairest possible way.

A key factor is a person’s background health status, because some underlying conditions, including hypertension, cardiovascular disease, chronic obstructive pulmonary disease, and cancer, are already known to significantly decrease the chance of recovery from the severest form of COVID-19 [1]. But disability per se often has no impact on health. People with visual and hearing impairments, or intellectual disability, can be just as healthy and therefore as likely to recover with treatment as anyone else. In other words, it is crucial that disability, however severe it may be, is not automatically 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 from COVID-19 – 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 to the point of uselessness the conceptual and experiential diversity hidden in ‘disability’.

The second set of assumptions concern predicted longer-term quality of life. Although there is general consensus among ethicists that critical care decisions should primarily be based on predicted outcome, in many cases the wording of guidelines have left it very unclear whether considerations about quality of life are implicitly or explicitly being drawn in as well. And in an overwhelmingly disablist society, using predicted quality of life to make allocation decisions generates a profound bias against people with disability. We know from abundant empirical evidence that non-disabled people tend to take it as a given that disability inescapably leads to life quality being worse, while people with disability generally 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 covertly, draws on assumptions about the quality of the saved life is in danger of codifying an unarticulated sense that a life with disability can never be as good – however a ‘good life’ is defined -- as a life without.

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. Any move to 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.

But even this is nuanced. 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.  (This would not necessarily discriminate against disability: a disabled person with experience in engineering or food production would be rather more socially useful than, say, a professor of bioethics.) But the SARS-CoV-2 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.

Discriminatory norms

Over the past half century disability activism and scholarship have helped to identify and challenge the powerful biomedical, cultural, political and economic forces that delineate our current norms of human form, function and behavior. Nevertheless, it’s undeniable that unexamined norms have often influenced the reasoning of the published guidance on triage. For example, the UK’s National Institute for Health and Care Excellence (NICE) published its COVID-19 Rapid Guidance on 21 March 2020, which recommended prioritizing critical care resources based on the Clinical Frailty Scale[2]. In its original form, the Rapid Guidance stated 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”, and suggest using CFS level 5 or more as one factor in making these decisions. However, as patient groups and representatives quickly pointed out, the CFS was designed in the context of aged care: it characterises different levels of frailty using criteria like the capacity to dress or go shopping unaided, that don’t necessarily play any role in clinical outcome for COVID-19. The description of ‘frailty’ at CFS level 5 would apply to many people with disability, including learning disabilities, autism, cerebral palsy and so on, who are otherwise in perfectly good health and no less likely to recover with treatment.

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. The recognition of the error and the speed of the response were admirable. Nevertheless, these and other guidelines continue to show a lack of awareness that commonly accepted parameters of form and function aren’t necessarily universal: that a lot of people who don’t fit the social norms of independent ability to dress, move around, or make autonomous decisions are nevertheless healthy and lead flourishing lives that are no worse or better than anyone else’s.

It has been 16 years since the United Nations Convention on the Rights of Persons with Disabilities was adopted; Australia became a signatory in 2007. Yet despite widespread official progress in recognizing disabled people’s rights, these problematic responses are an indicator of an ongoing resistance to considering people with disability as equal members of the community, with equal human and civil rights. We also know from prior experience that in situations of emergency, human rights are too often simply forgotten or ignored. This fundamental problem has potentially catastrophic consequences for disabled people in the COVID-19 global health emergency.

Some recommendations:

  • 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.

[1] doi: 10.1001/jama.2020.2648.

[2] https://www.nice.org.uk/guidance/ng159