In the thick of the COVID-19 pandemic, demand for vital resources has surpassed supply. Already, COVID-19 tests, protective gear, ICU beds, ventilators, experimental interventions, and healthcare personnel are scarce, and experts are anticipating limited access to any therapeutics or vaccines developed for COVID-19 in the near future. As some experts have put it, “rationing is already here.”
This shortage has attracted sharp attention to a long-standing debate in bioethics about how to allocate medical resources fairly, without giving short shrift to people with disabilities. To provide some background on this debate, the practice of triaging in the United States traces its origins to pre–Civil War times and was largely developed through periods of war. As medicine, transportation, and drug development evolved, so too did public ideas of how and whom to treat first. Despite the lengthy history of triage in the United States, we are still grappling with how people with disabilities will weather not just COVID-19, but the next pandemic too.
In response, bioethicists and medical experts have started to develop triage protocols for COVID-19 in order to help frontline healthcare workers make swift decisions about patients’ level of care, give healthcare workers clear rules to follow, spare them moral distress, and minimize suffering to patients. Part of what makes triage especially challenging is that the role of “triager” is usually played by frontline healthcare workers who lack prior experience with allocating resources under conditions of extreme scarcity. This is all the more reason to have a protocol already in place for time of mass disaster: one that is fair both procedurally — having a clear protocol and sticking to it — and substantively — conforming to principles of justice that have been debated and vetted by experts across fields.
Although triage protocols for COVID-19 vary by institution and jurisdiction, most have centered on the Sequential Organ Failure Assessment (SOFA) score, which predicts patients’ probability of survival to hospital discharge based on their lab results and other clinical data. The SOFA score is appealing to many experts because of its clinical objectivity, which, experts hope, will facilitate “a fair allocation of resources divorced from other socially-constructed determinants that could introduce bias and disadvantage [to] those on the margins of society.” By the same token, these experts caution against rationing based upon disability, so as to “ensure that no one is denied care based on stereotypes, assessments of quality of life, or judgements about a person’s ‘worth.’”
Yet, troubling triage protocols have also emerged, and many activists are worried that people with disabilities will be abandoned to “second-class medical status.” For example, Washington State’s triage guidelines have encouraged frontline healthcare workers to deprioritize patients with low baseline functional status, namely patients with “loss of reserves in energy, physical ability, cognition and general health,” even when it is unlikely to affect their response to COVID-19 treatment. Similarly, Tennessee’s triage guidelines exclude from ventilation certain people with dementia, traumatic brain injury, and advanced neuromuscular disease who require “assistance with activities of daily living.” As a result of these guidelines and others, the Department of Health and Human Services’ Office for Civil Rights has launched investigations in Washington State, Alabama, Kansas, Tennessee, Utah, and Oklahoma.
Most disability activists and op-ed writers have appropriately focused their efforts on critiquing the most extreme and egregious triage protocols. But an unfortunate byproduct has been that productive discussion of moderate triage protocols, which are most likely to prevail, is largely missing (with some exceptions).
To help fill that gap, let us return to the triage recommendation advanced by most bioethicists and medical experts. Most experts start from the premise that rationing decisions should maximize benefits, defined in terms of the number of lives saved, the number of years of life saved, or some combination of the two. From this, experts conclude that triage guidelines should consider disability when and only when it affects patients’ probability of short-term survival and intensity of resource needs, a conclusion that also follows disability law. Some experts have suggested that this recommendation would deprioritize disabled individuals who need more of a limited resource to survive. But, on the whole, this type of guideline would not negatively impact people with disabilities, given that most people with disabilities — such as those with visual or hearing impairments — are equally able to benefit from medical care. In other words, even though triage would systematically disadvantage patients with certain disabilities, the majority of patients with disabilities would be left unscathed (or perhaps even better off than they would be under alternative triage protocols). These experts emphasize that triage should be thought of as a tragic, but necessary outgrowth of the pandemic; in conditions of absolute scarcity, the goal should be to save more rather than fewer lives.
Although we generally agree with triage protocols that seek to maximize the number of lives saved, we have two practical concerns with the implementation of these protocols that deserve more attention.
First, because survival data on COVID-19 is still forthcoming, and the SOFA score and other objective clinical tools to predict mortality have not yet been validated in the COVID-19 context, it is possible that these tools could have low predictive accuracy. There is evidence from H1N1 that use of SOFA might lead to premature withdrawal of life support in critically ill patients who could have survived with a short stay in the intensive care unit (ICU). And there is emerging evidence from COVID-19 that other tools might perform better than SOFA. The result is that tools like SOFA might systematically deprioritize people with certain disabilities, disproportionately increasing their mortality without maximizing the overall number of lives saved.
Second, triage decisions will likely involve some combination of objective tools like the SOFA score and bedside judgements by individual healthcare workers, raising the concern that biases will influence judgements about survival and resource need. Without some kind of safeguard in place, generalizations about whose life is worth saving and who is likely to have a longer life are likely to play a role in triage. Disabled advocates have sounded the alarm about how this bias could mean their death.
As a result, many people with disabilities are caught between a rock and a hard place: they can be left at the mercy of clinical measures that deprioritize their disabilities; at the mercy of individual healthcare workers who may inadvertently introduce prejudicial attitudes about disabled people’s quality of life; or both. Triage protocols that allow significant leeway for individual discretion can yield the wrong decision in individual cases, but triage protocols that rigidly adhere to objective clinical measures can, too.
So — how should the healthcare system address these concerns?
A relatively simple recommendation is to fold medical specialists, clinical ethicists, and disability advocates into the process of making individualized judgements about survival and resource need whenever possible. Already, the most accepted triage guidelines require individualized assessment of patients by an independent committee located within hospitals and directed by an acute care physician. Clinical ethicists, patient representatives, ethics committee members, and on-call specialists who already belong to hospital staff should be incorporated into these committees. A further step would be to include community members with disabilities (or university faculty working in disability studies programs). Each state has at least one protection and advocacy agency (P&A) charged with protecting and advocating on behalf of disabled people. Hospitals can draw from P&As for disability representation.
Meanwhile, low-resourced and under-staffed hospitals that cannot establish their own committees should try to outsource triage decisions to committees at other hospitals rather than rely primarily on frontline healthcare workers. If peak shortages are staggered across the country, triage committees might not be overwhelmed by their volume of cases at a given time and could assist in cases at other hospitals.
Additionally, given that we are living in a time where pandemics may become more commonplace, incorporating triaging practices and disability-informed ethical considerations into the training of all healthcare workers is necessary. Helping healthcare workers work through their own biases in determining the values of human life is more important now than ever, for people with disabilities, and for all people who live on the margins. Black people and other minority groups are already disproportionately getting sick and dying from COVID-19; discriminatory treatment and disparate impact by race, ethnicity, and class is likely to be compounded by bias against disability.
Relying on frontline healthcare workers should be a last resort. Those frontline healthcare workers who do have to make triage decisions should not presume that an individual patient will fare poorly in the ICU because of her diagnosis, without seeking expert opinion from someone who is more familiar with the disenfranchised disability in question. At the very least, the treating physician of a patient with an underlying diagnosis should be consulted.
These safeguards are necessary because patients with the same diagnosis can show a wide range of disease manifestations, meaning that it would be scientifically inaccurate and unethical to stratify risks on the basis of diagnosis alone. Some patients might have a low probability of near-term survival from COVID-19, whereas others might have a probability of survival that is commensurate with that of the general population. It would be easy for a frontline healthcare worker to be influenced by outdated perceptions and to misestimate an individual patient’s likelihood of surviving COVID-19.
For example, as the subject of a formal complaint filed about triage explained, “I am concerned that a doctor will see my diagnosis of cystic fibrosis in my chart and make lots of erroneous assumptions about me. Cystic fibrosis often comes with significant breathing difficulties and a life expectancy of 30 years. . . . . However, tests show that I have better breathing capacity than most people without cystic fibrosis and although I am 28 years old, I have never been hospitalized and I am not anywhere close to dying.” Cystic fibrosis is a disease for which scientific knowledge, available treatments, and survival outcomes are rapidly evolving. In this context, consulting outside experts would do some work toward minimizing bias and confusion as difficult triage decisions are made.
Overall, we need a united front when it comes to developing triaging practices in the time of crisis. We are seeing through this pandemic that we are far from where we want to be, and the lives of folks who are already disadvantaged within the American healthcare system may be only further neglected.
The views herein are those of the authors and do not represent the views or policies of the Department of Health and Human Services, the National Institutes of Health, or the National Council on Disability. The authors would like to thank Joseph Millum and David Wasserman for their valuable input on COVID-19 and triage.