Minimally Conscious State, Research, and the Elephant in the Living Room

In early August, before we started this blog, there was a flurry of attention given to the latest research showing an intervention that brought about remarkable improvement in a man who was in a “minimally conscious state.” This is not the first development in this area to make the news, but it might have created more of a stir since the technique used probably resonates with the kind of “cure” story the public seems to like so much:

NEW YORK — He was beaten and left for dead in a robbery while walking home one night in 1999. His skull was crushed and his brain severely damaged.

For six years, the man could not speak or feed himself. On occasion he showed signs of awareness, and he moved his eyes or a thumb to communicate. His arms were useless. He was fed through a tube.

But researchers chose him for an experimental attempt to rev up his brain by placing electrodes in it. And here’s how his mother describes the change in her son, now 38:

“My son can now eat, speak, watch a movie without falling asleep,” she said Wednesday while choking back tears during a telephone news conference. “He can drink from a cup. He can express pain. He can cry and he can laugh.

“The most important part is he can say ‘Mommy’ and ‘Pop.’ He can say, ‘I love you, Mommy’ … I still cry every time I see my son, but it’s tears of joy.”

As I said, this wasn’t the first report that there might be more cognitive ability in some people with labels of “minimally conscious state” (MCS) and even “persistent vegetative state” (PVS) than commonly believed. Some of the research isn’t even that new. For example, in 1996 BMJ published an article by Andrews et al reporting the findings that 43% of the patients transferred to a rehabilitiation facility between 1992 and 1995 with a PVS diagnosis were misdiagnosed.

But that didn’t study didn’t make much news in the U.S. Increasingly, though, attention is being given to the uncertainty surrounding the degree of consciousness people with severe brain injury may have and what the future might hold for them.

What’s really gotten my attention, though, is what is not being asked or talked about in American media and bioethics circles. Questions are being asked about the fates of people being “written off” and left without therapy in nursing homes. But I can’t find any discussion in the American press talking about the life and death consequences that go with the PVS and MCS diagnoses, even in articles that include a mention of Terri Schiavo.

Isn’t it obvious that should be part of the discussion regarding the implications of research into consciousness and recovery? As mentioned in an earlier blog entry, 43 bioethicists signed onto a “friend of the court” brief in the Wendland case wanting to make it easier for families to end the lives of people with a diagnosis of MCS. It’s impossible to know just how many people with varying labels and degrees of cognitive disability die as a result of treatment withholding or withdrawal. Between the people with labels of both PVS and MCS whose lives have been ended through removal of feeding tubes, it’s virtually certain that at least some people have faced that end, silent and aware of what was being done to them.

So what’s going on here? Is this a classic case of the elephant in the living room? I’m not a big conspiracy theorist myself, so I doubt there’s collusion among medical professionals, bioethicists and the press in this country to avoid the topic. Although in the case of medical professionals and bioethicists, I suspect the silence may be similar to the uncomfortable silence you get when you talk to a Christian conservative about the virtual certainty that innocent people have been killed for being convicted of a capital crime.

The parameters surrounding the discussion aren’t shared by others outside this country. In 2004, Laura Spinney of The Guardian covered both the emerging research on misdiagnosis and the life and death consequences that hinge on an individual showing signs of consciousness soon enough in “Blink and You Live”:

When a 39-year-old Belgian woman suffered a stroke and fell into a coma, doctors concluded that she was unlikely to regain consciousness and, after a time, diagnosed her condition as persistent vegetative state (PVS). One of the criteria on which they based their decision was her inability to blink or track a moving object with her eyes. It was only when they discovered that the stroke had damaged a cranial nerve, preventing her from opening her eyes, that they realised their error. If they opened her eyes for her, she followed their instructions. Having regained full consciousness soon after her stroke, she revealed she had overheard all the bedside discussions as to whether it was worth keeping her alive. At no point had she wanted to die.

Others might not be so lucky. Research suggests that many patients left to die after being diagnosed as in PVS might have eventually recovered. They may have been in a twilight condition called minimally conscious state (MCS), which has until now proved difficult to identify. In recent years, MCS has muddied the waters further on what it means to be alive, and confused the debate over when is the right time to pull the plug.

See? The Brits can tackle these issues head on instead of sticking their heads in the sand. Surely we Yanks can do the same, can’t we? Can we talk about these research developments and talk about what it means in terms of “pulling the plug”? –Stephen Drake