As a bioethicist, much of my work has shifted during the Covid-19 pandemic. Perhaps more than anything else, it has got me thinking about how I can work for systemic change in healthcare. The pandemic has put in stark relief what I, as well as many others working in healthcare, have always known – our current system is discriminatory. There is ample literature on health disparities [1] experienced among racial and ethnic minorities in this country, but I want to draw attention to another group that has disproportionality been effected by the Covid-19 pandemic: persons with disabilities. As a disabled Christian, I am particularly sensitive to the ways disabled people continue to experience barriers and prejudicial attitudes in healthcare, which was evidenced recently when Michael Hickson’s [2] physician determined his quality of life was too low to receive lifesaving treatment after he contracted Covid.
It is not merely physician bias that needs to be corrected, however. Even public health guidance can discriminate unfairly against the disabled. In the early days of the pandemic, a great urgency was placed on hospitals to create emergency triage protocols that would guide teams of clinicians to ethically distribute critical resources if they became scarce. Who, for example, should get access to a ventilator, a potentially lifesaving technology, in the event that a hospital experienced a shortage? Public health guidance focuses on a utilitarian calculus, asking “how do we save as many lives as possible?” Of course, many pushed back on this logic, arguing instead lifesaving medicine should be based on a first-come first served basis, or perhaps on a lottery. Yet, few bioethicists or public health officials agreed; one does not have to be a thoroughgoing utilitarian to believe it is not prudent to give patients with little prospect of survival access to technologies that could be lifesaving to others during a shortage. To my mind, it is ethical to prioritize patients who will experience the most benefit from scare resources.
In practice, however, such determinations are fraught. Almost immediately, it became clear that triage guidance from several state public health departments [3] was full of discriminatory criteria that had less to do with survivability and more to do with subjective quality of life assessments. Alabama’s rationing recommendations excluded people with severe or profound intellectual disabilities from receiving intensive care and Washington’s excluded people with “loss of reserve” in energy, physical ability, or cognition. Due to the swift work of disability advocacy groups who filed complaints to the Office of Civil Rights [4], many state recommendations were later amended, yet they have revealed what people with disabilities have known all along – the healthcare system is stacked against them.
Disability advocates, whether religious or not, are calling institutions to account for neglecting the vulnerable.To bear witness to a compassionate God, we must attend to their prophetic pleas for reform.
Recently, a colleague likened his work combating health disparities with Martin Luther King Jr.’s insistence that he no longer wanted to be a Good Samaritan. King was tired of merely tending to battered and bruised individuals, he wanted to fix the Jericho Road to make it safe for everybody. In my work as a clinical ethicist, I have honed my ability to interrogate physicians’ decisions to deny treatment to individuals based on their quality of life, but I no longer believe that is enough, I want to help fix a broken healthcare system.
For persons of faith working healthcare, we cannot merely advocate for our individual patients. We must combat the system that allows for health disparities to occur in the first place. We ought to use our knowledge and power to work on behalf of those who are systemically vulnerable to the pervading believe that a disabled life is not worth living. And while many Christians are loath to do it, this might mean we need to get political. We have to develop relationships with our elected officials, state health departments, and local advocacy groups to encourage systemic reform. This may be a difficult process to begin with so many of us using up all the energy we have to tending to the crisis at hand, but we must resist going back to “normal” when the waters calm. Those of us in the disability community have never been fans of normal anyway.