Respecting Disability Rights During a Pandemic and Other Emergencies
Disabled patients must not be categorically excluded from access to treatment during a pandemic or at any other time of national emergency, writes Stanford Health Policy's Michelle Mello in the New England Journal of Medicine.
Michelle Mello writes in this New England Journal of Medicine perspective that in times of emergency — such as the COVID-19 pandemic we are living through right now — legal structures get flexed.
"For example, to enable hospitals to respond to Covid-19, the Department of Health and Human Services (HHS) recently waived a swath of federal regulatory requirements. But though officials’ emergency powers are extensive, the ability to discard antidiscrimination protections is not among them. A hallmark of our legal system is that our commitment to prohibiting invidious discrimination remains steadfast even in times of emergency.
"Pressure is put on that commitment when the need arises to triage patients to receive scarce medical resources such as ventilators and intensive care unit beds. As states and hospitals plan for surges of Covid-19 cases, they have had to make difficult choices, some of which have prompted criticism. In March and April 2020, disability rights advocacy groups and persons with disabilities filed complaints with the HHS Office of Civil Rights (OCR) alleging that guidelines put forth by Alabama, Kansas, New York, Pennsylvania, Tennessee, Utah, and Washington illegally discriminated against persons with disabilities (see table). Guidelines from Massachusetts have provoked similar concerns. Analysis of these complaints suggests that policymakers and hospitals can take several key steps to honor commitments to antidiscrimination principles while appropriately stewarding scarce resources during a public health emergency.
"In the bull’s-eye of complaints by disability rights advocates are policies that base triage decisions on quality-of-life judgments or exclude patients with specific conditions that constitute disabilities. For instance, Alabama’s now-rescinded guidelines called for hospitals to withhold ventilators from patients with 'severe or profound mental retardation,' 'moderate to severe dementia,' or 'severe traumatic brain injury.' Utah’s guidelines recommend excluding patients with advanced neuromuscular diseases 'requiring assistance with activities of daily living or requiring chronic ventilatory support.'”
