Friday, February 5, 2010

Politics and the Persistent Vegetative State.

The big news in medicine this week is the anticipated release of a study, published in the New England Journal of Medicine, that looks at brain activity in persistent vegetative state patients, showing that in - let's admit - very qualified cases a patient shows adequate brain activity to respond to questions via brain scan.

This communication works accordingly: A patient who shows normal or close to normal brain activity is told to visualize two separate activities, playing tennis or walking around at home, as correlating to yes or no answers to questions. The patient's brain was then monitored for the proper response (activity representative of tennis or home) to six yes or no questions. One example cited that a patient "answered" 5 of the 6 questions properly. In other words, their brain, a majority of the time, acted out the activity associated with a yes or no answer in response to a question.

It's a very encouraging study, one that shows opportunity to "reach" patients who have heretofore been thought inaccessible, locked-in, in a coma or "brain dead."

A glimpse of the study and how it would be received was had in January when the media ran away with the story of Rom Houben, a Belgian man who was said to be "discovered" after 23 years in a coma. Steven Laureys, one of the primary writers of the study, has displayed some bashfulness regarding the initial overblown reaction to Houben's media attention. TV and newspapers overplayed the drama - no one could resist the feel-good "discovery" of a man thought to be brain dead, of a mother remaining hopeful for 23 years, of disabilities overcome to where Houben could type on a keyboard. Houben's means of communicating, however, have since been seriously questioned. Yet, Houben's story, however questionable, is one of hope and when it comes to caring for a loved one - for 23 years! - the hope that they are still "in there," is what keeps one going.

What the study is not is an indictment of current policy regarding the decision-making process for patients in persistent vegetative states. But politics are at play and the findings are being used to promote a particular agenda, with various politicized groups and noise-makers working to play it for their own purposes.

GeriPal has already commented on what the media interpreted the study to mean, citing the following headlines as examples of the exaggerated spin:

Take a guess though what the media headlines focus on:
*Scientists read the minds of the living dead (New Zealand Herald)
*Patients in 'vegetative' state can think and communicate (The Telegraph)
*Brain scan shows awareness in vegetative patients (BBC News)
*Brains of vegetative patients show life (LA Times)
*Study Finds Cognition in Vegetative Patients (Wall Street Journal)

These headlines are just wrong. They give the impression that all patients with PVS are aware and can communicate. In truth, this study showed that a minority of patients with PVS showed some signs of awareness, and those happened to only be in those who suffered from a traumatic brain injury (not from other causes such as anoxic brain injury).

As I noted earlier this week, using the example of Terri Schiavo, the media reports were rather over the top but consistent (despite their titles and spin) in their description of what ramifications the study had for patients like Terri Schiavo: None. Hers was an anoxic brain injury caused by lack of oxygen, not a traumatic injury as those who showed brain activity and response to the study's tests.

The media's objective is clearly to convey an attention-getting, emotional, sensational story of hope. Use the cultural ignorance of scientific studies to inflame the cultural divide. It gets ratings. Other's have another purpose.

Bobby Schindler, brother of Terri Schiavo, full time "pro-life" speaker, and co-founder of the Terri Schindler Schiavo Foundation, has long called for a reexamination of the persistent vegetative state diagnosis because he wishes to prevent removal from artificial nutrition and hydration of any PVS patient, despite their living will (advance directive) or the wishes of their medical proxy. At the foundation website today is a story that claims more tests should have been done on Schiavo before the court upheld her husband's wishes to remove her from ANH. It's a disingenuous position, a case of hope perpetuated too long, used only to prevent other patients from having a say in their medical decisions.

Then there's the conservative Discovery Institute Fellow Wesley J. Smith, amusingly called a "top bioethicist" by Catholic blogs, who was wrong about Rom Houben's media attention, too blinded by the report's ability to support his "pro-life" case to see the junk science parlayed by the media. Smith, a close friend of the Schiavo family, specializes in demonizing those who desire a science- and patients' rights based approach to end of life decisions as the "culture of death." Want to remove your loved one from ANH? You must be a killer. The judge in the Schiavo case? He wasn't using judicial precedent to determine who should choose Schiavo's medical options, he was, as Smith says, eager to let the bad people "kill" her:

"Indeed, when it was clear that Terri would be lying in bed for a year pending appeals, the family begged Judge Greer to permit sophisticated brain scanning that had never been used on her before," he recalled. "It couldn't have hurt her, and it might have shown something. But stubbornly, he refused. I will go to my grave believing the judge knew what he didn't want to know."

And then you have the Catholic Church, powerful, organized, rich in resources, motivated as the aid in dying movement brings end of life decisions to the forefront around the globe, to increase its efforts to oppose patient's rights.

In November the Church changed its Ethical and Religious Directives - which govern treatment of 1/5 of patients in the US - to prevent patients or their families from requesting removal from artificial nutrition and hydration. In fact, those who do not want the insertion of feeding or hydration tubes would now only be abided by when the Church decided.

The media may be looking for good ratings, but other constituents like the Schindlers, Smith and the Catholic Church are working for something much more nefarious: to take away your rights.

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Blogger Bill in NC said...

Schiavo was so debilitated after over a decade lying in bed I doubt any of her guardian ad litems would have allowed her to be moved from her facility for any type of scan.

That's even if you could even find a facility willing to do a brain scan, considering the proclivity towards litigation on both sides of the PEG tube battle.

BTW, inserting a PEG tube is not an emergency procedure so any hospital would need permission from the patient or their guardian/health care proxy to place one.

February 6, 2010 at 5:29 PM  

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