On September 16, ABC News in Oakland, California reported on a hospital’s threat to remove breathing support from six-month-old Kingston Holmes. The infant needed a ventilator due to a brain injury following a cardiac arrest at home.
The first thing I ask when I read a story like that is when did the cardiac arrest occur? According to the news report:
Kingston Holmes, just 6 months old, has been at UCSF Benioff Children’s Hospital in Oakland, on a breathing machine since last month. The infant suffered a severe brain injury from cardiac arrest while at home on Aug. 5.
His parents said the child was perfectly healthy right before the incident. (Emphasis added.)
So, slightly less than six weeks after the brain injury, the hospital gave a letter to Kingston Holmes’ parents, “stating ‘his breathing machines will be turned off on Monday, September 17 at 1pm’ due to irreversible brain injury.”
Six weeks is too early to render a prognosis on an “anoxic” brain injury, the type that occurs when something like a cardiac arrest deprives the brain of oxygen.
Recently, the American Academy of Neurology (AAN) issued new clinical practice guidelines for assessing disorders of consciousness. Here are some relevant excerpts from recommendation 7 concerning “vegetative state” (VS) [BTW – We strongly object to that term, which seems designed to influence people to think of the individual as a plant rather than a human.]:
The 1994 AAN Multi-Society Task Force defined VS as “permanent” three months after a nontraumatic insult leading to VS and 12 months following a traumatic injury, acknowledging that unexpected recoveries will occur after these times but that these cases will be rare and typically associated with severe disability.
So the old guidelines set the minimum at three months, not six weeks. But the new guidelines go much further:
A reanalysis of the Task Force data completed by nonaffiliated authors concluded the estimated rates of late recovery for traumatic and nontraumatic VS were unreliable. . .
When considering patients with nontraumatic VS/UWS for at least one month, recent studies suggest that some patients may experience ongoing recovery after three months. Meta-analyses performed in this systematic review found it is possible that 17 percent … will recover consciousness (emerge from VS/UWS) at six months, and that after six months, it is possible that an estimated 7.5 percent …may recover consciousness from nontraumatic VS/UWS. . . .
Although the majority of patients who remain in VS/UWS across the first three (after non-TBI) and 12 months (after TBI) post injury will remain in this condition permanently, a substantial minority will recover consciousness beyond this time frame. While most of these patients will be left with severe disability, functional outcome ratings indicate that some will regain the ability to communicate reliably, perform self-care activities, and interact socially.
To read more from the guidelines, go here.
So the “irreversible” prognosis given to Kingston Holmes’ parents six weeks post anoxic brain injury was not remotely consistent with the American Academy of Neurology guidelines. Perhaps that is one reason why UCSF Benioff Children’s Hospital capitulated to the parents’ objections to the early removal of life support and transferred him to Stanford Children’s Health, as reported by local ABC News on the Monday his breathing support had been scheduled to be stopped.
I haven’t been able to find out what happened since then. But I wanted to share the information from the American Academy of Neurology, because we read other stories and even receive calls from families in similar situations. All too often, doctors and hospitals make pronouncements that someone is permanently unconsciousness that are not at all consistent with AAN guidelines. This has been true under the previous guidelines which called for waiting periods of “three months after a nontraumatic insult leading to VS and 12 months following a traumatic injury,” and will be even worse going forward unless doctors and hospitals stop rushing to judgment. It’s bad enough when they ignore the disability rights perspective, but no one should ever defend doctors who ignore the experts in their own field.
I have two more things to share for those who are interested in this subject. First, one of the leading neurologists on this topic, Dr. Joseph Fins, wrote a book called “Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness”. Dr. Fins brings up the Americans with Disabilities Act in this context.
And here is a 5-minute video explaining in very understandable terms how brain imaging technology can be used to establish communication with people previously thought to be in a “vegetative state”. According to the video, out of 200 people tested, 20 percent were reportedly found to be conscious and able to communicate.
—Diane Coleman
Thank you so much for this post! I have a brain injury and know many people with TBI and Stroke who were supposed to be dead but luckily were given the change to recover and are still very much alive now. The brain is very slow to heal so I believe we must give people with brain injuries as much time as possible to recover. I see a disturbing trend where people with brain injuries are treated as almost non humans by medical professionals simply because they do not respond to us in the “typical” way and this has to stop immediately. A lot of people with brain injuries are much more aware than they are given credit for.