Sunday, September 28, 2003

The Times got it wrong.

An article in today's New York Times follows up on research first published last year in the medical journals Brain (abstract only; full text requires subscription) and Neurology (abstract). The gist of the research is that many "permanently unconscious" patients are in neither a coma nor a permanent vegetative state; instead, they may be experiencing some degree of consciousness:
The implications of this research, both for medical ethics and practical policy, are potentially huge. Traumatic brain injuries are a significant health problem in the United States, but the study and treatment of them are clouded with a sense of hopelessness, a feeling that consciousness is too mysterious to be understood. When faced with patients in a vegetative state, doctors can do little more than wait to see if they wake up. No treatment has ever been definitively shown to help patients recover consciousness, and doctors can't predict which patients will emerge from a vegetative state and which won't. If patients don't show signs of recovery in a few weeks, they usually wind up at home with their families or in nursing homes, and they rarely see a neurologist again. In 1976, in a famous court case, the parents of Karen Ann Quinlan, a woman who had been in a vegetative state for about a year, won the right to take her off a ventilator (after which she lived until 1985). ''There's a point where people give up'' and discontinue aggressive treatment, says Joseph J. Fins, chief of the division of medical ethics at Weill Medical College. ''The question is, Are we giving up too soon on the ones who might become more functional?'' Schiff and his colleagues say that the answer, in too many cases, may be yes.
Indeed, some of the patients may be able to recover, however fleetingly, quite remarkable levels of conscious interaction with others, through deep massage:
Giacino works hard to tease out hints of awareness in a patient. Sometimes he can actually coax patients into consciousness by working his fingers deep into their muscles. Neurologists have found that the stimulation of the nerve endings in the muscles can be powerful enough to arouse activity in networks of neurons in the brain. Giacino has a particular knack for the technique, and after a few seconds of muscle work, he can get some minimally conscious patients to speak. Some tell him their names, others tell him to leave them alone. As soon as he removes his hands, they slip away again.

Marie Conniff has seen Giacino work this transformation many times. On New Year's Day in 1998, her son Scott was on duty as a New York policeman when a drunken driver rammed his car. Today, Scott sits in a wheelchair, his gaze often drifting across the room. Sometimes he laughs, sometimes he growls like a bear. He gives hard kicks to a big orange beach ball hanging from the ceiling. When Giacino begins to work her son's muscles, Conniff finds herself startled at how well Giacino can bring Scott back, in the look on his face, the clarity of his movements. ''I see a lot of what I had before he got hurt,'' she told me.
Until now, I have been very skeptical of claims that patients in a persistent or permanent vegetative state were "disabled" patients in need of protection against discriminatory policies that give up on the disabled as if they were already dead. The accepted paradigm for PVS is that the neocortical hemisphere is, for all intents and purposes, dead. This article -- quite misleadingly -- suggest that it is quite plausible that some number of such patients, diagnosed as PVS in accordance with protocols published by the American Academy of Neurology, experience relatively high levels of functioning, some of which might be recovered through appropriate therapies. Some of researchers whose work is discussed in this article have written to The Times to dispute any such implication. (I'll provide a link when and if The Times publishes their letter.) They want to clarify that PVS is and continues to be a valid diagnosis from which there is no return to sentience.
posted by tommayo, 1:15 PM

Health care law (including public health law, medical ethics, and life sciences), with digressions into constitutional law, poetry, and other things that matter