NRL News

New “game-changing” findings and recommendations offer new hope to brain-injured patients unfairly labeled “vegetative”

by | Nov 1, 2018

By Dave Andrusko

In his post for the Catholic Phily, Richard Doerflinger calls new findings and recommendations from a prestigious group of medical organizations nothing short of “game-changing.”

Doerflinger, who worked for 36 years in the Secretariat of Pro-Life Activities of the U.S. Conference of Catholic Bishops, is referring to new guidelines from the American Academy of Neurology, “developed along with other experts and the National Institute on Disability, Independent Living and Rehabilitation Research” to the treatment of and understanding about people who for decades have been dismissively described as being in a “vegetative state.”

Doerflinger reminds us that as far back as 1983, Daniel Callahan, arguably the most significant bioethicist of the 20th Century, “said many of his colleagues were interested in withdrawing food and fluids from these helpless but medically stable patients because ‘a denial of nutrition may in the long run become the only effective way to make certain that a large number of biologically tenacious patients actually die.’”

Get that? The only way you can be sure these patients get dead is to starve and dehydrate them. I remember reading that (and commenting about it) at the time and a chill still runs up and down my spine thinking about it.

You want to read Mr. Doerflinger’s post in its entirety , so let me just highlight a few of the group’s findings.

To begin with, the all-important importance of words. “Vegetative state” will be replaced by the far more accurate description of “unresponsive wakefulness syndrome.” As the headline to Doerflinger’s post reads, “They’re not vegetables, they’re people.”

There is an acknowledgment that there is a huge degree of misdiagnosis—roughly 40%. “This includes cases where patients diagnosed as ‘vegetative’ actually had locked-in syndrome, where they cannot respond but are fully aware (so presumably they can hear their doctors calling them vegetables).”

Then there is this very sobering observation. A third of patients with severe traumatic brain injury died in the hospital . But why?

Turns out, Doerflinger writes, “70 percent of the deaths were due to withdrawal of life support, and such withdrawal had more to do with the facility where care was provided than with the severity of the symptoms.”

But what about rehabilitation? Good news there, too. “There is a significant chance for rehabilitation (sometimes allowing patients to return home and resume employment) even in patients who have been in this state for a year or more, so ‘continued use of the term ‘permanent vegetative state’ is not justified.’” Doerflinger writes. “The term ‘chronic’ should be used, as it does not imply irreversibility. Protocols are recommended for enhancing the prospects for recovery.”

It is amazing how initial conclusions become set in concrete, even though subsequent research ought to act like a jackhammer to break the consensus. A new understanding often takes decades and is typically the result of dedicated researchers.

We have written more than a dozen posts on the work of one, Dr. Adrian Owen. He and men and women like him have methodically shown that (a) not all severe brain injuries are the same; (b) by using advanced equipment such as electroencephalography and positron-emission tomography you can help give patients “their voice back”; and, to quote Doerflinger once again (c)”In short, our medical system has been giving up on far too many of these patients, prematurely ensuring their deaths based on faulty diagnoses and self-fulfilling hopeless predictions.”