Medical systems all over the world are overwhelmed by the sudden increase of COVID-19 patients. The numbers overburdened hospitals that now has to choose which lives to save and which ones to let go of. This ongoing dilemma is worrying about disability advocates because medical experts might think that their lives won't count.
The value of a life
Contemplating the value of life during a pandemic may be brutal to those who are not in the medical field, but these ethical calls are done by hospitals with more patients than ventilators and equipment who now have to identify which patients get priority. Dr. Douglas White, a professor of critical care medicine at the University of Pittsburgh, has created one system for patient prioritization.
White's framework is called "A Model Hospital Policy for Allocating Scarce Critical Care Resources," and it operates under two large sets of criteria: save the most lives and save the most number of life years the patient is expected to have should they receive treatment and survive.
White said that the Model Hospital guidelines had been adopted in hundreds of hospitals around the United States, including Johns Hopkins and Medstar. He said that although tragic choices are inevitable, the only thing worse than developing a clear allocation framework is not developing one, because without a framework the decisions made during a crisis will be biased.
When it comes to the number of life-years a patient may have left, White's framework de-prioritizes patients with medical conditions linked with a life expectancy of less than one year, and then two to five years. His triage guidelines do not take into account a person's disability status as blindness or h do not have a direct bearing on a person's expected lifespan.
Disability advocates fear discrimination
Alice Wong, an activist and editor of the book "Disability Visibility: First-Person Stories From the Twenty-First Century" said that American culture worships youth, health, productivity, and independence and leaves out so many people who do not fall into any of those criteria.
Wong is bound to a wheelchair and has two family members who serve as her caregivers, but she said that her needs do not stop her from pursuing a fulfilled life of purpose and she sees her situation as an opportunity to advocate for others who are facing similar challenges.
Wong added that policies that devalue the worth of those with disabilities also devalue the diversity of lived human experiences that can constitute a fulfilled life. She also said that policies thinking that those with disabilities only drain health care resources are those who objectify disabled people as consumers of precious goods and services rather than being human beings who are valued by communities.
Advocacy groups have filed lawsuits against states that have discriminatory guidelines. Global Down Syndrome Foundation is part of a coalition of disability-related organizations monitoring state guidelines that could discriminate against certain groups with disabilities.
According to Michelle Sie Whitten, the CEO, and co-founder of the Global Down Syndrome Foundation, during the first wave of coronavirus infections, she acknowledged that it has been rare for the emergency triage guidelines to be used in real-life situations. But she said it was important to talk about discriminatory procedures now especially a second wave of infections is already predicted to happen later this year.
This is the reason why The Arc and the Center for Public Representation have filed complaints against some states to the US Department of Health and Human Services' Office for Civil Rights.
So far, they have reached resolutions with two states, as Alabama removed old 2010 triage guidelines after it showed discrimination based on disability and age, and Pennsylvania is now revising guidelines that had de-prioritized people for medical treatment based on certain disabilities.
