As the COVID-19 pandemic quickly moved across the nation this spring, state governments and health systems rushed to create or revise their crisis standards of care that contain medical rationing guidelines. In light of the crisis, how can we distribute health care resources equitably and without discrimination or bias when they are in short supply?
During a podcast interview, Kim Justus, host of Brain Injury Radio, asked me an important question: “What is an underlying condition, and does it include brain injury?” The Centers for Disease Control and Prevention (CDC) uses the term “underlying conditions” to refer to chronic conditions that might put people at risk for more severe disease or death with COVID-19. Kim was worried because she has a history of a cerebral aneurysm rupture and a concussion from a fall and is in good health.
Gina Biter-Mundt, Adaptive Sports Consultant at the Kaiser Foundation Rehabilitation Center in Vallejo, California, is also worried. She voiced a collective fear: “Conversations I’ve had with friends are pretty depressing. Many of us are concerned that if it comes down to who will have a better outcome and survive if infected, and if there’s a shortage of ventilators, we’ll be passed over, and the vent will be allocated to someone else.” Gina has a mobility impairment due to a cervical spinal cord injury and uses a wheelchair and is in good health.
One in four Americans lives with a disability, defined by the Americans with Disabilities Act (ADA) as “a physical or mental impairment that substantially limits one or more major life activities.” Each of us grows a list of medical conditions over a lifetime, some of which are associated with a disability. A disability is not synonymous with poor health, however. And an underlying condition is not necessarily associated with a disability.
Disability organizations have pushed back against the crisis standards in a growing number of states. Alabama’s 2010 plan singled out people with mental retardation, dementia, and traumatic brain injury as poor candidates for ventilators. Although now removed from the website, this plan was still on the state’s website when the pandemic arrived. In March, Washington State began to develop a medical rationing plan based on age and underlying conditions. In response to complaints, the U.S. Department of Health and Human Services Office for Civil Rights (OCR) ruled that “…persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities.”
After the OCR ruling, the Disability Rights Education and Defense Fund (DREDF) and other organizations argued that California’s newly written were discriminatory. California plans to revise the standards with stakeholder and partner engagement. In Massachusetts, experts pushed for acknowledgement that disparities contribute to underlying conditions and disabilities in their state’s standards.
Crisis standards typically use prediction tools such as the Sequential Organ Failure Assessment (SOFA) scoring system. SOFA’s predictive accuracy varies across scores and populations. Experts argue SOFA was not intended for individual assessment and could be inaccurate for people with disabilities. We have only preliminary experience using SOFA scoring during this pandemic. Disease-specific COVID-19 biomarkers such as laboratory data about inflammation or clotting may be more important predictors.
It’s a very confusing situation because of what we don’t know about the virus and how it behaves in each of us. Epidemiologic reports add to the confusion. Male sex is thought to be a risk factor, although perhaps not in Massachusetts? Advanced age is a supposed risk factor, although people over the age of 100 have survived? A substantial number of young people have died without any risk factors? What genetic factors or environmental factors play a role? The bottom line is that there is no risk calculation that can accurately forecast outcomes for an individual person infected with this novel virus.
There is also another major problem with mortality statistics during this pandemic. Medical rationing decisions are almost never reported, although they obviously affect statistical outcomes.
The need for medical rationing may continue to be required with new spikes in COVID-19 cases during 2020 and beyond. Few would argue that precious resources be used for a patient who has little or no chance of survival. Saving more life-years, the use of random selection in cases of “similar patients”, and prioritizing front-line health care workers have support from bioethicists.
Let’s not base decisions on flimsy science or bias. Being human is an overriding condition that makes us all vulnerable. The virus doesn’t discriminate in seeking out its victims and neither should we. We must address the fundamental problems in our inadequate health care delivery and public health systems that have created a situation that necessitates rationing.
Elizabeth Sandel is a physiatrist and author of Shaken Brain: The Science, Care, and Treatment of Concussion.
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