I have dysautonomia and Hypermobile Ehlers Danlos Syndrome (hEDS), which has multi-system effects including heart rate and blood pressure dysregulation, partial digestive tract paralysis and unrelenting chronic pain. When I’m not in my wheelchair, you wouldn’t know that I was disabled — most of my symptoms are invisible. And if I fell ill with covid-19 and had to go to the hospital, we would want to keep it that way for as long as possible. My disability does not naturally shorten my life expectancy, but I’m afraid that medical rationing could.
We decided that I definitely wouldn’t take my large power wheelchair to the hospital; I would instead rely on the manual options that they would provide. That way, any mobility issues could be blamed on the virus, and not my disability. We would certainly exaggerate just how many tasks of daily life I can do on my own. (I can’t grocery shop, cook or clean, and there have been times when even getting to the bathroom was more than I can manage alone, but I definitely wouldn’t mention any of that.) David and I thought through my different identities — writer, mother, social worker — and decided that the last vocation was the most valued by society; I’d lead with that.
My family’s urgent planning session was prompted by my reading about the NICE Clinical Frailty Score, used by the United Kingdom’s National Health Service (NHS). During the coronavirus pandemic, doctors may encounter shortages requiring them to triage patients, and this scale — scored from 1 through 9, with 9 being the most frail, or “terminally ill” — would help determine who receives critical care first, or at all. I’m between a 5 and a 6, and the document indicated that health-care providers should deprioritize those at 5 or above.
Though we live on the other side of the Atlantic, and British medical authorities eventually revised these guidelines, their mere existence sent us into a panic. I’m not proud that I was willing to lie, or to abuse my privilege as someone who can pass as able-bodied. But, facing this example of potentially life-threatening discrimination, I felt terrified that, should I seek medical care at a hospital, I might not see my toddler grow up.
My husband and I scoured the Internet for clues indicating what metrics our local hospitals might use. What we found disturbed us: In the United States, the most widely accepted form of triage, often called the “utilitarian” approach, seeks to save the most people for the most years, taking into account a patient’s condition upon entering the hospital plus preexisting conditions. For example, one Alabama triage document indicated that in the case of “severe mental retardation,” doctors should carefully consider whether critical care could benefit the patient. Washington’s exclusion criteria, meanwhile, instructs physicians to consider a patient’s “baseline functional status,” based on reduced energy or reliance on assistance, when allocating resources. And Pennsylvania tells doctors to consider excluding patients with cancer and a life expectancy of fewer than 10 years.
But mortality predictions, even made in the best of times, may not be accurate. In fact, the Sequential Organ Failure Assessment (SOFA), which some states use to rank a patient’s chances of survival and priority of treatment, was not developed as a rationing tool or even a survival predictor, but rather, as a way to determine appropriate treatment for patients with sepsis. In fact, the National Academy of Medicine has specifically warned against using the SOFA to predict mortality in medical rationing and triage. Even if we could perfectly predict mortality, this would be far from a neutral principle: Due to our society’s health-care disparities along lines of race and class, prioritizing patients most likely to survive would probably have discriminatory impacts.
State metrics often also consider age, quality of life, functional status and social usefulness, in addition to mortality, but this offers little comfort: Quality-of-life assessments are particularly dangerous to disabled people because we aren’t the ones rating our own lives, and patients’ and doctors’ perceptions often diverge. Relying on medical providers with unacknowledged bias to assign our lives value is, at best, terrifying.
Publications including the New York Times, Vox and the Wall Street Journal have reported on the ethical dilemmas that doctors may confront in the face of bed or equipment shortages. These scenarios are rapidly becoming more than theoretical: At Columbia University’s hospital, for example, doctors are already jury-rigging ventilators to allow two patients to use just one. Experts predict that New York and New Orleans will experience ventilator shortages this week. Health-care providers are already working in harrowing conditions, and they haven’t seen the worst of it. I admire their service, and do not envy the burden they carry.
But these narratives largely miss the perspective of the people who will die because of these decisions. In response, disabled activists are speaking out, declaring, like we have so many times before, “nothing about us without us.” And those of us on the losing end of ethical dilemmas have something else to say to the presumptive winners: This kind of illness may be the first time you are truly present in your body and feel that presence as torture. At some point, you may be certain that it’s more than you can handle. You may have moments in which the entire world becomes a tiny pinhole and the only thing you feel is pain. Then, you’ll realize that you crave food. Or want to watch TV. What felt impossible becomes tolerable, and eventually fades to the background. Incredibly, you will adjust; that adaptation is survival. If, after your encounter with covid-19 or any other disease, your functional status is altered long-term, your disabled brothers and sisters will be here to welcome you. You’ll find, as I have, a community that is resilient, inclusive, thoughtful and powerful. Many of us have already been where you are headed. If you let us die, who will show you the way?
I’m not tugging on your heartstrings so that you’ll reject logical medical rationing. I’m drawing you back to the bone-deep truth: We all have value, no matter how much care we require or what equipment is needed to prolong our lives — and inequality has a way of hurting all of us. When we reduce one another to social usefulness, life expectancy, daily function and time spent in the ICU — when we feed those factors into some kind of algorithm to determine who is worthy of care — all of us become less human and less humane.
Amid this pandemic, disabled people like me are glued to their screens, worrying about the decisions that others will make for us were we to fall ill. We are listening when you talk about us. We hope you will listen, too.