By Katrina N. Jirik, PhD
As health care resources grow increasingly scarce amid the COVID-19 pandemic, states, hospitals, and individuals are forced to make tough decisions about the rationing of care. These decisions are often framed in terms of medical and/or legal criteria. However, many people, especially the physicians who make the difficult decisions, realize they have a huge moral component related to perceptions of the value of an individual’s life.
Various states have triage guidelines in place, which differ somewhat, but primarily reflect a utilitarian goal of saving the most people with the least expenditure of finite resources. This is where the societal issue of the value of the life of a person with a disability comes into play.
Many of the guidelines state that the decision to treat needs to consider co-morbidities and anticipated resource use in the future. This is updated eugenic thought, whereby you have only the survival of the fittest, with an assumed understanding of what “the fittest” actually entails. These conceptions are based on a medical model of disability, something many people with disabilities find extremely problematic. It’s also based on the mainstream’s idea of what life with a disability is like, rather than the actuality. It ignores the societal discrimination and institutional barriers people with disabilities must deal with, things that are not an aspect of their disability, but of society’s belief about their disability.
People with disabilities have a long history of their lives being devalued and denied resources. The Nazis murdered over 300,000 people with disabilities, many of them children, calling them “useless eaters,” who consumed scarce resources without contributing anything of value back to society. By the 1950s, residents with cognitive impairments in institutional settings were routinely used as subjects for experiments that had nothing to do with their conditions. Sabin’s polio vaccine was field tested on residents of the Sonoma State Home in California. Salk’s vaccine was tested on the residents of the Polk State School in Pennsylvania. At Willowbrook State School in New York, 51 children were fed hepatitis infected fecal extracts in their milk in an experiment conducted by Dr. Saul Krugman, an infectious disease specialist at New York University Medical Center. Geraldo Rivera’s 1972 exposé, Willowbrook, documented that staff provided surveillance over residents who were treated like animals. Other examples abound.
Most people with disabilities can document at least one negative interaction with the medical community, so it should come as no surprise that people with disabilities find some of the stipulations in the guidelines terrifying.
The New York guidelines state that during a triage period, a person using their personal ventilator who enters into an acute care setting will be triaged like any other person and if they don’t meet the criteria for ventilation, they will have their personal ventilator removed. This will result in the person’s death. The guidelines do not address how the confiscated ventilator will then be used.
The Ontario Triage Protocol, dated March 28, 2020, which establishes guidelines for rationing potentially life-saving support in the province, was authored by Dr. James Downer, a prominent member of a Canadian euthanasia lobbying group.
Right now, people with disabilities are flooding social media with their concerns. Currently, several states are facing disability discrimination complaints, which have been filed with the US Office of Civil Rights by disability organizations. These complaints are over the states’ rationing of care guidelines, and claim they violate the civil rights of people with disabilities as outlined in the American with Disabilities Act, Section 504 of the Rehabilitation Act, Section 1557 of the Affordable Care Act, as well as the March 28, 2020 bulletin from the HHS Office of Civil Rights.
Most physicians and bioethicists involved in establishing rationing of care guidelines have not claimed disability status. This needs to change. Somewhere there must be physicians and bioethicists with disabilities who could offer their valuable perspectives. Guidelines set out by disability organizations, HHS, and other groups need to be incorporated into any rationing of care guidelines. These documents already exist; they just need to be utilized. Without this, the guidelines will remain controversial and be seen as just another form of discrimination.
As medical professionals and bioethicists deal with the conundrum involved in establishing rationing of care guidelines, the mantra of the disability community comes to mind. Nothing about us, without us.