Bioethics Forum Essay
Structural Racism, White Fragility, and Ventilator Rationing Policies
It’s been painful to watch health leaders twist themselves into moral knots denying that recently created ventilator rationing guidance will differentially affect Blacks, Latinx, and other people of color. On television, in newspapers, and on listservs, when the predicted disproportionate impacts of these policies are raised, some bioethicists-often white, stonewall. Or repeat a policy’s assertions that race, ethnicity, disability, etc. are irrelevant to care decisions. Or default to the intent of the policymakers.
“White fragility” is the term educator Robin DiAngelo coined to describe such behavior. This avoidance of dealing with race and racism stems in part, she says, from whites not understanding themselves as raced, not owning up to being the dominant racial group in the United States and to having racial privilege. White fragility is not new to bioethics, but it is highly visible now.
The inequitable racial landscape of the United States is hardly deniable. The effects of racism on health status and on access to health care are well documented. Comprehensive race/ethnicity data relevant to Covid-19 will likely affirm inequitable patterns in exposure, testing, and treatment, patterns that are already being observed by practitioners in some facilities and officials in some states.
Other bioethicists have been clear, at least in professional circles, that social inequities including structural racism do in fact shape crisis standards of care, that ostensibly “objective” measures of the likelihood of short and long term survivability depend at least in part on comorbidities that disproportionately affect people of color. And they acknowledge that such criteria will have life-threatening consequences when ventilators are scarce. To do otherwise would be to deny the very presence of racism in health care and medicine.
Last week I watched “Edge of the City,” a 1957 film starring Sidney Poitier, John Cassavetes, and Ruby Dee. At the movie’s end, white man after white man denies witnessing their white boss’s racist murder of a black co-worker. Denial of this man’s death was a denial of his life as well as a denial of the racism that led to his death. This interpersonal racism has a corollary in structural racism, which also kills.
What to do about structural racism in health care is a critical conversation that requires white people, as members of the dominant racial group, to sit with the uncomfortable reality that we have benefited from a racial hierarchy that has harmed others. It requires us to acknowledge that structural racism is present in health care, health policy, and public health; to understand that the intent of policymakers is less important than the effects of their policies. And to trust that those most affected by structural racism have crucial knowledge about effective strategies to reduce and end it. To begin that conversation, bioethicists must, at the least, stop denying that structural racism exists in health care policy and that it can kill.
Charlene Galarneau is a senior lecturer in the Department of Global Health and Social Medicine at Harvard Medical School’s Center for Bioethics and associate professor Emerita at Wellesley College’s Department of Women’s and Gender Studies.
Racism is not new. Just a few decades ago, in Europe, racism against Jews, gypsies and gay people was led by Aryan supremacists, while much of the world remained silent. Now it is not just about non-Aryan people, but older people, sick people or just economically non-productive people, except children. A good excuse is to live fully or live to be completed, but it is not as simple as the elderly against children. youth vs. old people. But far from this problem: Who is this older man? How is your health? Does he / she have any illness? Is it a terminal illness? And on the other hand: How is this young boy? How is your health? Does he / she have any other comorbidities?
While in the Commonwealth and in the United States, utilitarianism and autonomy are the most frequent guide used, and are a good way to solve many problems in everyday life and for some ethical or bioethical problems, as we can identify in published articles, but in IberoAmerica (Latin America + Spain), solidarity and social justice is the way we prefer to tackle these problems. Not only, this person we give access to the machine and not this person (the respirator).
All people deserve treatment for who they are, the people, the human beings, the members of the world community, the country, they are also our neighbors and they want to be treated in the same way. It would be worth remembering Levinas and seeing how “the committee” denies his respirator and sentences him to death for CoviD-19.
Children are very important in our society, they are our future, but older people are our past, our history. They are guardians of human culture. Yes, they are not economically active, but they were. They already paid for their access to the machine.
So who’s going to go to the breathing machine? The one that requires it. Who asked for it first? Who is sicker? And, of course, this not an randomized clinical trial, so, not use a coin to solve this.
The right to health needs to be recognized as something universal. As Tom Beauchamp and James Childress framed in 1979 with the 4 principles of Bioethics, in this case we need a principle of consequentialist and positivist Justice that benefits everyone equally (equality) but that more who needs it (equity). Humanity is the word we need these days with the COVID-19 health emergency. Health is everything, without the first the rest of the interests have no place.
DiANgelo in her referenced work makes the comment, “White supremacy is more than the idea that whites are superior to people of color; it is the deeper premise that supports this idea – the definition of whites as the norm or standard for human, and people of color as a deviation from that norm.” So to address racism, we must first acknowledge that we operate under white norms. Continuing to operate in this way allows us to convince ourselves that we are “objective,” but when supposed individual objectivity is expressed within the context of a white normative framework, we cannot claim objectivity when it derives from the collective subjectivity inherent in that framework.