The Loom

Consciousness and the Culture Wars

It’s never pretty to see journalism transformed into propaganda, especially when you’re the one who wrote the journalism. I recently did an article for the New York Times Magazine about the grey zone between coma and consciousness. The National Right to Life web site then posted a long “News & Views” piece by one Dave Andrusko that pretended to recount my article. It was annoying enough to see careless mistakes–adding quotation marks to a passage from the article, so as to put it into the mouth of a doctor, for example. But it was really unpleasant to see my article distorted to serve a political purpose.

Here’s some background. The National Right to Life Coalition is opposed to witholding care from people with chronic, severely impaired consciousness. Karen Ann Quinlan’s parents went to court for the right to take her off a ventilator in 1976; since then, families have won the right to have feeding tubes withdrawn from patients. Currently there’s a case in Florida over a woman named Terri Schindler-Schiavo, whose husband wants her care terminated.

My article was primarily about scientists who are doing basic research on the biology of consciousness, trying to figure out what’s going on in the brains of people who cannot tell them anything about their own inner life. In some cases, people with seriously impaired consciousness–who cannot talk, who can barely follow a command to blink an eye–turn out to respond to language and other stimuli with brain patterns that are surprisingly like those of conscious people. It might even be possible some day to give them drugs or electrodes to help them become a little more conscious.

In retelling this story, Andrukso of the National Right To Life Coalition snipped up the story and turned it into a collage to suit their agenda. And in the process, he spread some serious misinformation that could confuse families and cause them unnecessary grief.

In the Times article, I describe the spectrum of states that exist below the level of full consciousness. If you get in a car crash, you may come into a hospital in a coma. In other words, your eyes are closed and you have no signs of consciousness at all. If you survive for a few weeks, you may come out of the coma but still not be conscious. Your eyes open and close in a wake-sleep cycle, you may move your eyes, you may squeeze someone’s hand. But that’s about it. This is known as a vegetative state. (VS) You may stay in this state for the rest of your life–in a chronic vegetative state, in other words. Or you may begin to show more signs of consciousness. If you show signs of consciousness that are unreliable–touching your nose once on command and then not touching it in later examinations, for example–then you may be diagnosed as being in a minimally conscious state (MCS). From MCS, you may gradually show more reliable signs of consciousness until you recover fully, or you may stop at MCS for the rest of your life.

The doctors I portray have done two different studies. One they did on chronically vegetative patients, some of whom showed strange behaviors–like shouting a curse word every couple days in one case. In those studies they found that isolated parts of the cortex are still active in some patients, like fragments of mind. The more recent study (still ongoing, actually) is on MCS patients. In response to the sound of a familiar voice or a scratch on the arm, the brains of these patients become active in much the same way conscious brains do. And yet, between these responses, their brains use less energy than someone under full anesthesia. It suggests a real biological difference between chronic VS and MCS, and hints at some ways to bring more awareness to people with MCS (a few hundred thousand Americans are in MCS, by the way).

Here’s what you get in the National Right to Life piece: MCS supposedly “identifies people who are in a condition somewhere between a pvs [persistent vegetative state] and a coma.”

That’s like saying 3 is somewhere between 1 and 2.

By mixing up the differences between MCS and VS, Andrusko performs a sleight of hand with the results of the scanning work, making it seem as if vegetative patients actually have these remarkable reserves of mental activity. And then comes the political twist: “With the Zimmer article,” he, “we can hope that the rag-tag army of family, friends, and volunteers who have stood by Terri Schindler-Schiavo has been provided with some reinforcements.” And he then adds, “How ironic that it should come from the New York Times!”

I see another irony in all this. It is absolutely untrue that people accurately diagnosed in chronic vegetative states–who have not shown signs of consciousness for years–have shown any evidence of consciousness in brain scans. Only those in MCS do. The distinction is crucial–particularly because in the past some people with MCS may have been misdiagosed as being in a vegetative state.

I’m not writing this to attack the National Right to Life Coalition for their political positions. Frankly, in the narrow confines of a blog, I don’t even want to get into the vastly complicated issue of withdrawing care from these patients. (Except to point out that so far, the courts have refused to come down in favor of withdrawing care from MCS patients when their wishes were not clearly stated before they lost consciousness.) But shuffling facts to suit your political needs–particularly when it concerns the most agonizing experience a family could ever go through–is pretty awful.

I’m reminded of Mark Twain’s reaction to seeing a ridiculous translation of one of his stories into French. “I think it is the worst I ever saw,” he wrote, “and yet the French are called a polished nation. If I had a boy that put sentences together as they do, I would polish him to some purpose.”

Comments

  1. #1 Juan Schoch
    May 20, 2004

    Please sign and if you have others who would care to sign please forward to
    them.

    What we are asking for here is a geometrical progression.

    Send to 10 or more caring people in your circle of friends who will
    do the same and so on.

    http://www.petitiononline.com/Felos518/petition.html

    Carefully read the Florida Bar petition online before signing, requesting
    the Florida Bar bring described formal action involving attorneys George
    Felos and Deborah Bushnell, for reasons described in the petition.

    FLORIDIANS AND NON-FLORIDIANS accepted. This is going straight to the
    Florida Bar. Count is around 131 at this time. Please send this to as many
    caring individuals as you can with the message to others to take the same
    actions.

    Refs:

    http://www.sptimes.com/2004/03/30/Tampabay/Doctors_examine_Schia.shtml

    You can view the police report, concluded May 14, 2004 here:
    http://zimp.org/pr/. By clicking the thumbnails, you can view a full-size
    scan of each page. Additionally, you can download the entire package for
    offline viewing (requires Winzip) here: http://zimp.org/pr/pr.zip.

    The above report not only indicates that absolutely nothing suspicious was
    found as the result of this exhaustive investigation, but also that the
    ‘marks’ and ‘needle cap’ (which turned out to part of an irrigation kit)
    were found PRIOR to Terri’s parents visiting that day.

    Additionally, I encourage you to read the press release issued by Mr. Felos
    the night of the alleged incident here:
    http://zimp.org/documents/felospr032904.pdf in which he states that a
    forensic team was investigating the matter. In speaking personally with the
    Clearwater Police Department, I have learned that they don’t even have a
    forensic team.

    Be creative, do take action.

    “Petition for State protective custody for Terri” (please get the petition
    information out to as many peoples as possible)
    http://www.PetitionOnline.com/chisana7/

    “Saving Terri Schiavo”
    http://www.PetitionOnline.com/19461949/

    Laws being broken:
    http://zimp.org/

    Connect the Dots … for Terri
    http://www.freerepublic.com/focus/f-news/1130771/posts?page=11#11

    http://www.terrisfight.org

    http://bellsouthpwp.net/p/c/pc93/terri_schindler_life_ribbon_campaign.htm

  2. #2 Juan Schoch
    September 12, 2004

    http://www.prweb.com/releases/2004/9/prweb154415.htm

    FL AHCA Cover-Up Forces Schoch to Issue Public Writ of Mandamus

    A cover-up by the Florida AHCA (under Jeb Bush) in regards to the treatment and care of Theresa Schindler Schiavo, etc. forces Juan Schoch to issue a Public Writ of Mandamaus to various City, County, State and Federal officials.

    Tallahassee, FL (PRWEB) September 2, 2004 — The following public writ of mandamus was sent via Express Mail and certified letters to all parties in the letter on 8-28-04. It was also passed out to the media in Tallahassee the day before and on the day of the oral arguments before the Florida Supreme Court regarding the constitutionality of HB 35-E/S 12-E (Public Law 03-418). This is my Public Writ of Mandamus. Each letter came with a mini cd of the AHCA documentation and other information which proves there is a cover-up. (Note: If you would like to represent or know someone who would like to represent this case please call Juan Schoch at 407-925-4141):

    August 28, 2004

    James D. Boyd
    Inspector General of AHCA
    2727 Mahan Drive
    Tallahassee, FL 32308-5403

    Re: All information, CCR#s, and yet to be assigned CCR#s contained
    and referred to in CIG#200406030002 and AHCA Tracking #05-003, etc.,
    other cases yet to be generated and your duties to set Theresa
    Schindler Schiavo on the road to her recovery (much can be found in
    the enclosed mini compact disc)

    Dear Mr. Boyd:

    Thank you for your letter of August 13, 2004 regarding my August 9,
    2004 e-mail requesting public records and copies of various agency
    documents. In your response you write “…the issues raised in your
    June 3 letter and July 20 e-mail did not show evidence of possible
    violations of statutes, policy or procedure that could constitute
    misconduct or wrongdoing on the part of agency staff…” to which I
    make the following statement and request:

    I demand as a United States citizen and a Florida resident
    sufficient corrective actions, remedies, redress, relief, etc. to
    what I perceive and know to be illegal actions of AHCA, facilities,
    etc. I hereby request AHCA and any other government agency or
    entity, local, county, state or federal invested with investigative,
    enforcement and prosecutorial powers who may be reading this, or
    others of whom it is within their purview of being able to contact
    said powers, etc. to do their jobs of investigating, enforcing or
    assisting in getting the laws enforced in regards to valid
    allegations of acts of felony neglect and attempted murder, etc.
    perpetrated against the person of Theresa Schindler Schiavo.

    While it is my duty (when it has come to my knowledge) as a resident
    of the State of Florida and a United States Citizen to report
    abuses, neglect or exploitations against vulnerable people who can’t
    speak for themselves it is NOT my job to site book and page. One
    would think that the competency level of all persons in agencies
    serving the public who by statute are to receive, properly review
    and survey complaints for violations of statutes, criminal
    violations, disregard for policies and procedures that are in fact
    evidence of misconduct or wrongdoing on the part of agency staff and
    facilities, persons, etc. would be much higher then heretofore
    displayed.

    I have provided, while perhaps to some seemingly disconnected or
    incongruent, sufficient, overall and comprehensive evidence to
    illuminate within the average persons mind and their reasonable
    ability to piece together and comprehend pertinent data, more than
    enough evidences of illegal conduct, which point to statute
    violations on the part of agency staff and facilities, etc. and it
    has become painfully clear that people in your and other agencies
    are spending more time sending not just me, but most complainants,
    relating to the matters presented, far afield from the matter at
    hand, of which there is or are:

    * Non-delivery of all 15 retained rights of this incapacitated
    person pursuant to Florida Statute 744.3215(1)(a-o) both
    individually and collectively as a whole

    * State licensed facilities bowing to the abuse of power by the
    guardian, his attorneys, local law enforcement, the state attorneys
    office, and other public officials to facilitate and further the
    denial and withholding of this citizens statutory and constitutional
    retained rights

    * Illegal acts and or omissions by many supervisory level personnel
    in many agencies and facilities, in non-fulfillment of their duty by
    those personnel pursuant to Florida Statute 415.1034 mandatory
    reporting to invoke and call upon protections under the
    whistleblowers act when their employment is threatened. Such and
    other failures are enabling, promoting and facilitating what appears
    to be an overall agenda of their various supervisors (and others)
    who indirectly and/or directly are working collectively (knowingly
    or unknowingly) pursuant to a directed agenda by the recently
    exposed many in positions of public trust

    In light of the fact that AHCA Complaint Administration Unit intake
    operator Justina told me that they “didn’t want to hear about what
    particular statute violations were occurring as it is the AHCA’s job
    to know these things,” and as I have stated above it is not my job
    to point out the specific violations of statutes, policy, or
    procedure that could constitute misconduct or wrongdoing on the part
    of agency staff, facilities, etc. (your words in bold), it should be
    obvious to you that while I am perfectly capable of seeing and
    reporting specific violations I was being told not to do this by the
    Complaint Administration Unit intake personnel. Now I am being told
    by you to the contrary that I must do your jobs. This in and of
    itself is evidence of an agency and a system that continues to
    notoriously exhibit incompetence in this matter, and only proves a
    limited ability to send the very people who you serve, on endless
    tail-chases and endless non-productive rabbit trails.

    While all of this energy is expended, the primary matter at hand,
    the FS825.102 and FS825.103 abuse, neglect and exploitation of
    Theresa Marie Schiavo continues at the liable hands of all agencies,
    various personnel and public officials, etc. to the detriment of not
    only her but all vulnerable adults, elderly and disabled persons
    throughout the State of Florida by the acts and omissions of every

    one of these negligent persons who are entrusted with the Public’s
    Trust.

    BE IT KNOWN, that everyone is officially on notice, that to continue
    to obey these illegal and subversive directives, of persons who wish
    to continue to further the obvious and blatant efforts to
    intentionally cause the death of this very conscious, self-aware,
    cognitive, disabled and vulnerable adult (who has been actively
    prevented from getting better) as defined by Florida Statute 415,
    744, 825, 400, 782, the ADA Act, and CFR42 rises to the level of
    felony crimes and is unlawful, collectively, pursuant to Florida
    Statute 876.22 through FS876.31 known as the Subversive Activities
    Act, in that the collective efforts, whether knowingly or
    unknowingly, of all the involved including medical professionals,
    public servants, facilities, guardians, caregivers, and others, is
    ultimately resulting in the destruction of all that we as free
    citizens enjoy as our constitutional protections, which are there to
    guarantee our inalienable right to life, liberty to that life, and
    the pursuit of happiness through our FS744.3215 retained right to be
    restored to capacity at the earliest possible time, which has no
    time limit.

    An Inalienable Right is particularly defined as: That which cannot
    be given or taken away. Thusly, a person cannot Give their Life away
    nor can it be Taken away. Both are crimes, and protections of life
    are networked rather thoroughly throughout our Laws and our
    Constitution.

    Consider this my public Writ of Mandamus to all (with various media
    as my witness) who will be receiving this letter, to cease and
    desist your acts or omissions which are felony crime statute
    violations, which may lead ultimately to this woman’s death by your
    incompetency, complacency, malfeasance, misfeasance, obedience to
    personal or collective agendas, disobedience of mandatory reporting
    of abuse, neglect and exploitations. This will require your
    proactive efforts in conjunction with other agencies and persons, to
    go against those who draw you in and only use you as pawns in a
    bigger agenda, by this case, to create a constitutional Right To
    Make You Dead. Investigate and prosecute the guilty parties. It is
    your obligation to set Theresa on the road to her recovery.

    Do your jobs or suffer the consequences in the long run for your
    participation in blatant, in your face, felony crimes.

    Sincerely,
    Juan Schoch / Lake Mary, FL

    P.S. I was never issued new CCR#’s per my written complaints (June
    3, 2004) and yet you have done nothing but obfuscate that fact. I
    find this more than just a little reprehensible and believe it shows
    the complete and total incompetence, if not outright obstruction of
    justice, by you, your staff, the AHCA Complaint Administration Unit
    and others in your agency. It would be smart to stop digging
    yourself a hole and get back on the right track.

    cc: Jeb Bush, Governor
    c/o Christa Calamas, Governor’s General Counsel,
    Charlie Crist, Attorney General,
    Lee Constantine, Senator, District 22,
    Derry Harper, Chief Inspector General, Executive Office of Governor,
    Dawn Case, Director of Investigations, Executive Office of Governor,
    Guy M. Tunnell, Commissioner, Florida Department of Law Enforcement,
    Lance Newman, Director, Tampa District Office, Florida Department of
    Law Enforcement,
    Cynthia Schuler, District Administrator of District 14, Department
    of Children and Families,
    Bernie McCabe, Pinellas Pasco State Attorney,
    Dorene Thomas, Chief of Police, Pinellas Park Police Department,
    Sid Klein, Chief of Police, Clearwater Police Department,
    Everett Rice, Pinellas County Sheriff,
    Carl Whitehead, Special Agent in Charge, FBI Tampa Division,
    John L. Wodatch, Chief, Civil Rights Division, Disability Rights
    Section, U.S. Department of Justice,

    Representatives of House Committees Elder Affairs and Long Term
    Care, Family Health, Health Care and Health Services: Rep. Hugh
    Gibson / Rep. Dorothy Mindingall / Rep. Tom Anderson / Rep. Joyce
    Cusack / Rep. Carole Green / Rep. Richard Machek / Rep. Sheri
    McInvale / Rep. John Quinones / Rep. Dave Russell / Rep. Heather
    Florentino / Rep. Sandy Adams / Rep. Aaron Bean / Rep. Faye Culp /
    Rep. Nancy Detert / Rep. Matt Meadows / Rep. Sandra Murman / Rep.
    Nan Rich / Rep. Frank Farkas / Rep. Ed Homan / Rep. Holly Benson /
    Rep. Gus Bilirakis / Rep. Marty Bowen / Rep. Susan Bucher / Rep.
    Larry Cretul / Rep. Rene Garcia / Rep. Gayle Harrell / Rep. Arthenia
    Joyner / Rep. Stan Mayfield / Rep. Dave Murzin / Rep. Joe Negron /
    Rep. Ralph Poppell / Rep. Manuel Prieguez / Rep. Julio Robaina /
    Rep. Yolly Roberson / Rep. Ray Sansom / Rep. Eleanor Sobel / Rep.
    Shelley Vana / Rep. Roger Wishner / Rep. Juan Zapata

    Kate O’Beirne, Washington Editor, National Review / David Sommer,
    Reporter, Tampa Tribune / Brendan Farrington, Correspondent,
    Associated Press / Jim Witters, City Editor, Bradenton Herald / Mike
    Vasilinda, Bureau Chief, Capitol News Service / John Lucas, Bureau
    Chief, Florida News Network / Marshall Griffin, News Director,
    Florida Public Radio / John Baker, Bureau Chief, Florida’s Radio
    Networks / Rick Flagg, Bureau Chief, Florida Radio News / Jim
    Saunders, Bureau Chief, The Florida Times-Union / Paige St. John,
    Bureau Chief, Gannett News Service / Marc Caputo, Reporter, The
    Miami Herald / Lloyd Dunkelberger, Bureau Chief, New York Times
    Florida Newspapers / John Kennedy, Bureau Chief, Orlando Sentinel /
    Shirish Date, Bureau Chief, The Palm Beach Post / Lucy Morgan,
    Bureau Chief, St. Petersburg Times / Linda Kleindienst, Bureau
    Chief, Sun-Sentinel, South Florida / Nancy Cook Lauer, Bureau Chief,
    Tallahassee Democrat / David Wasson, Bureau Chief, Tampa Tribune /
    Georgia Davis, News Director, WFSU-TV/The Florida Channel / Jim
    Lehrer, NewsHour w/, PBS / Diane Sawyer, ABC News / Dan Rather, CBS
    News / Larry King, CNN/Atlanta / David Shaw, Media Critic, Los
    Angeles Times / Richard S. Newcombe, Creators Syndicate / Reed
    Irvine, Chairman, Emeritus, Accuracy in Media

    # # #