(RNS) — The very concept of “persistent vegetative state” is, first of all, deeply offensive. No living, breathing human being is a vegetable, regardless of how disabled they are. Second, the concept was always a profoundly sloppy category into which many folks with different kinds of brain injuries and diseases were shoved. If it wasn’t brain death, and it wasn’t a coma, well, maybe it was a vegetative state? Despite this medical and scientific shoddiness, thousands of doctors have told family members that their loved one is in a vegetative state and that, essentially, he or she was no longer there.

Indeed, at the conclusion of the most public fight over this idea — that of Terri Schiavo’s parents vs. her husband — her legally victorious husband (who wanted Terri to stop getting food and water despite her parents wanting to care for her) wrote on her tombstone that she “departed this earth” on Feb. 25, 1990, when she had her massive brain trauma and was “at peace” March 31, 2005, when she was starved and dehydrated to death.

Joe Fins, one of the most influential secular bioethicists in the world, wrote a seminal book on the topic of vegetative state back in 2015. Titling it “Rights Come to Mind,” Fins masterfully uncovered the big lie about so-called vegetative state. He not only highlighted that about 25% of those deemed to be a vegetable are able to demonstrate consciousness (something we knew well before 2015), but also — with the right therapies — Fins demonstrated that people who cannot demonstrate consciousness in this state often do get better and become conscious again. As you read the book, you can almost feel Fins being stunned by all of this — especially in his being moved to aggressively call for a new civil rights movement for those with these types of brain injuries.

Fins’ calls went unheeded, however. There was still what he called “prognostic pessimism” and “therapeutic nihilism” in response to patients slapped with the “vegetative state” label. Indeed, the push to hold onto the outdated way of thinking about this kind of brain injury was so strong, Fins wrote with clear frustration, that “the vegetative state has become something of a catechism in North American bioethics.”

What might it take for these facts to finally break through the almost religious level of commitment to the old way of thinking? How about the recent feature article in The New York Times Magazine titled, “Vegetative Patients May be More Aware than We Knew”?

This insanely well-reported piece (the author spent a year interviewing neuroscientists, ethicists, families and other players in these debates) deftly moves from emotional storytelling to the facts those in the story found from their own research. Tabitha Williams, for instance, was doing research after her husband Aaron was diagnosed as being in a vegetative state and came across a very important August 2024 New England Journal of Medicine study by Yelena Bodien and colleagues. It found that of 241 unresponsive patients tested with fMRI and EEG, a quarter were found to be “covertly conscious” and able to follow commands internally.

The article, like Fins’ work, notes that this science goes all the way back to 2006 and Adrian Owen, a Cambridge neuroscientist, who discovered that a vegetative woman could imagine playing tennis, and a brain scan picked up this activity. The article also noted that, in 2018, the American Academy of Neurology dropped the use of “permanent” vegetative state and replaced it with “chronic.” The reason? The notion of permanence implies irreversibility, which, they said, “is not supported by the current research.”

The New York Times Magazine piece also confirms what Fins found: Despite 20 years of data on this question that challenges the practices, the practices have largely not changed. Once “vegetative” is written on someone’s chart, there is largely no coming back. No rehab, no reassessment, insurance authorization stops. Families who claim their loved ones are conscious are ignored or dismissed as irrational. Nurses sigh, expressing exasperation that such patients are still on their floor. Physicians turn away from video taken by a hopeful family.

But now an impeccably researched and reported feature-length piece, published in perhaps the most widely read periodical of our time, directly contradicts the bad medicine our health care institutions have been practicing. Could this be a pivot point in how we engage people with massive brain injuries and diseases?

Maybe. But maybe not. If the judgment is made that those with such injuries and diseases have lives that are simply not valuable, then things are unlikely to change. This is, after all, not a clinical judgment based on bad facts but rather an ethical judgment based on bad morals.

And this judgment continues to have wide and deep implications for people with other medical issues: locked-in syndrome, later-stage dementia, even brain death. We know so little about how consciousness works (the best accounts of it, at least today, don’t locate it in a single organ like the brain), but the laughably bad science used to evaluate most people deemed to be in a vegetative state suggests that most of those who hold power in our current health care system simply don’t care.

If they think you don’t matter, then you don’t matter. 

This is where Fins’ call for a new civil rights movement becomes so important. The New York Times Magazine mentions his view that people with massive brain injuries have a right to be recognized — not as the “it” of an empty body from which the soul has departed — but as a fully human being. This kind of cultural shift, says the article, could be “emancipatory.” Indeed. And not just for human beings who have previously been deemed vegetables — for all human beings with profound disabilities.

We are coming up on the 250th anniversary of the Declaration of Independence, a document that claims human equality comes from the way we are created by God, not the various traits we do or do not happen to exhibit at any one point in our lives. It is an open question how many people still believe in this theological source for fundamental human equality, particularly in health care. The fact that Fins’ call for a new civil rights movement has gone unheeded suggests an answer that, at least for me, is deeply uncomfortable. But let’s hope that the new attention this issue is getting could turn the tide in favor of authentic human equality.