Not only was that wrong of me, but it’s the sort of thing I usually try hard to avoid. Again, I apologize to Robert Johansen, and I’ll try to do better in the future.
I know I said that I wouldn’t be posting about Terri Schiavo again. Well, I was wrong. I’ve seen so many references to Rev. Robert Johansen’s National Review article about Terri Schiavo – and the article itself is so irresponsible, full of distortions, outright lies and character assassination – that I can’t resist commenting on it.
At the start of the article, Rev. Johansen claims that Terri has been badly cared for. The proof? She’s had decubitus ulcers (or, as most of us call them, “bedsores”), which Rev. Johansen claims are “a classic sign of neglect.” But in fact bedsores are difficult to prevent absolutely; even a patient receiving excellent care can occasionally develop a bedsore (Christopher Reeve died from a bedsore-related infection). In just a single year, 13% of nursing home patients develop bedsores, and it’s been 15 years for Terri.
If anything, Terri’s relative lack of bedsores prove that she’s been well-cared for. From the neutral guardian ad litem’s report (pdf file):
[Terri's parents] made allegations that [Michael] was not caring for Theresa, and that his behavior was disruptive to Theresa’s treatment and condition. Proceedings concluded that there was no basis for the removal of Michael as Guardian Further, it was determined that he had been very aggressive and attentive in his care of Theresa. His demanding concern for her well being and meticulous care by the nursing home earned him the characterization by the administrator as “a nursing home administrator’s nightmare”?. It is notable that through more than thirteen years after Theresa’s collapse, she has never had a bedsore.
Rev. Johansen also suggests that the fact that Terri needed dental care (she’s had a few teeth pulled) proves she’s badly cared for. But Terri was a bulimic (although Rev. Johansen doesn’t mention this) ; bulimics can have have tooth rot problems for years to come, due to having destroyed teeth enamel. Even ordinary adults can have tooth problems; given Terri’s history, that she’s had teeth pulled isn’t evidence of anything.
Terri’s diagnosis was arrived at without the benefit of testing that most neurologists would consider standard for diagnosing PVS. One such test is MRI (Magnetic Resonance Imaging).
That Terri has never had an MRI is Johansen’s major complaint. Johansen goes on to quote a number of hand-picked neurologists who say that they’d never diagnose without an MRI, and wrings his hands a lot over the moral horribleness of ever making a diagnosis without an MRI.
The problem? Johansen appears to have bungled his research. Two separate sources – one from a doctor who has examined Terri, and one from a right-wing website strongly opposed to letting Terri die – confirm that an MRI was performed on July 24, 1990. According to the right-wing website’s timeline, the MRI showed “Profound atrophy w/ very atrophic appearing cortex. Mild white matter disease, anoxic/hpoxic injury.” Nothing in that makes a diagnosis of “permanent vegitative state” surprising.
It’s true that no more MRIs have been conducted since 1990. One reason for this is that Terri had experimental implants put in her brain in 1990, which make it impossible to perform another MRI. Rev. Johansen implies in his National Review article that there’s no good reason not to remove the implants, but this is questionable. As an internet writer argued on Metafilter:
Taking out a thalamic implant involves going deep into the brain (the thalamus is basically located right in the middle) to take the implant out. Going to the thalamus means going through brain tissue on the way to the thalamus…which usually involves destroying some tissue on the way to the thalamus. It’s likely that tissue would be destroyed in this surgery…and if the whole point is to keep whatever is left of her brain intact, this seems like a mistake.
Obviously, I’m not claiming some writer on the internet is a medical authority (neither is Rev. Johansen). But what this writer says is both logical and consistant with what I’ve read elsewhere. More importantly, there is no such thing as risk-free brain surgery; and few responsible doctors would recommend brain surgery that was not necessary. And this surgery simply isn’t necessary.
As Dr. Cranford wrote, explaining why no MRI or PET scan was recommeded after 1990:
An MRI was never recommended because, in this case and other patients in a permanent vegetative state, the CT scans were more than adequate to demonstrate the extremely severe atrophy of the cerebral hemispheres, and an MRI would add nothing of significance to what we see on the CT scans. Plus the MRI is contraindicated because of the intrathalamic stimulators implanted in Terri’s brain. A PET scan was never done in this case because it was never needed. The classic clinical signs on examination, the CT scans, and the flat EEG’s were more than adequate to diagnose PVS to the highest degree of medical certainty.
At this point, based on an MRI, years of CT scans, multiple EEGs, and their own neurological examinations of Terri, eight different board-certified neurologists (Dr. James Barnhill, Dr. Garcia Desousa, Dr. Thomas Harrison, Dr. Jeffrey Karp, Dr. Vincent Gambone, Dr. Melvin Greer, Dr. Ronald Cranford, and Dr. Peter Bambakidis) have concluded that Terri is in a Permanent Vegitative State.
Although other neurologists – usually based on nothing more than seeing out-of-context video clips of Terri – have questioned this diagnosis, or suggested that further examination might be useful, these doctors have never done a neurological examination of Terri; and they have not looked at her MRI, her CT scans, her EEGs or her medical records. Of those who have made public affidavits, none address Terri Schiavo’s medical issues in any serious manner (Rivka, who has a doctorate in clinical psychology and has completed a year-long practicum in clinical neuropsychology, has a detailed critique of the affidavits).
Considering only the opinions of board-certified neurologists who have examined all of Terri’s medical records and who have given Terri a neurological examination, eight have determined that she is in a persistant or permanent vegitative state (PVS). Only one – Dr. William Hammesfahr – has said otherwise. However, Dr. Hammesfahr appears to be something of a con man. For example, he frequently claims to be a nominee for the “Nobel Peace Prize in Medicine,” a claim that’s simply not true. He has repeatedly claimed that he has cured patients with conditions similar to Terri Schiavo’s – but he was unable to name a single such patient when put under oath. In 2003, the Florida Board of Medicine found that he had charged a patient for providing medical services he hadn’t actually provided, and fined him over $50,000 (mostly in adminstrative costs). Although he says he can perform cures other neurologists would find miraculous, he has never published evidence of his amazing results in a peer-reviewed journal. (His theories have, however, earned Dr. Hammesfahr his own entry on quackwatch.org). Nor has he ever explained how it is that a MRI, multiple CAT scans, and multiple EEGs of Terri’s brain can all be so mistaken.
This is not the record of a doctor whose opinion should be taken above the opinion of eight of his peers. And aside from Dr. Hammesfahr, every doctor who has personally given Terri a neurological examination has found that she’s in a PVS.
Of course, Rev. Johansen might respond that in his article, he showed that Dr. Cranford, a highly-respected neurolgist who testified that Terri is in a PVS, has a record just as checkered. There are two essential differences. First of all, Dr. Cranford is just one of eight neurologists who have examined Terri and diagnosed her PVS, whereas Dr. Hammesfahr’s opinion stands alone. More importantly, what I’ve said about Dr. Hammesfahr is actually true, while what what Rev. Johansen said about Dr. Cranford is not.
First of all, Rev. Johansen points out that Dr. Cranford has been involved in many legal cases involving the question of withholding medical treatment (including feeding) from PVS and other severely incapacitated patients. That’s meaningless; Dr. Cranford is a prominant expert, so of course he’s been a witness multiple times. Rev. Johansen also points out that lawyers don’t call doctors as witnesses if the doctor’s diagnosis doesn’t suit their case, but that doesn’t say anything one way or the other about a testifying doctor’s credibility. (My father has frequently been hired as an expert medical witness in lawsuits involving hearing loss; he examines the patients and makes his diagnosis, and then the lawyers decide to call him to the stand or not. Nothing about this process means that expert witnesses are being dishonest; this is simply how our legal system works).
Rev. Johansen’s misinformed attempts at character assassination aside, is Dr. Cranford’s diagnosis unreliable? Rev. Johansen says it is:
In cases where other doctors don’t see it, Dr. Cranford seems to have a knack for finding PVS. Cranford also diagnosed Robert Wendland as PVS. He did so in spite of the fact that Wendland could pick up specifically colored pegs or blocks and hand them to a therapy assistant on request. He did so in spite of the fact that Wendland could operate and maneuver an ordinary wheelchair with his left hand and foot, and an electric wheelchair with a joystick, of the kind that many disabled persons (most famously Dr. Stephen Hawking) use. Dr. Cranford dismissed these abilities as meaningless. Fortunately for Wendland, the California supreme court was not persuaded by Cranford’s assessment.
If true, this would be a very serious charge, and a legitimate blow against Dr. Cranford’s credibility. But it doesn’t appear to be true. According to Dr. Cranford:
The record is very clear that I did not testify that Robert Wendland was in a PVS, and the same applies for the case of Michael Martin in Michigan. Both these patients were clearly not PVS (see Broder AJ, Cranford RE. Mary, Mary, Quite Contrary, How Was I to Know? – Michael Martin, Absolute Prescience, and the Right to Die in Michigan. University of Detroit Mercy Law Review, 1995; 72:787-832. and Nelson LJ, Cranford RE. Michael Martin and Robert Wendland: Beyond the Vegetative State. Journal of Contemporary Health Law and Policy, 1999;15:427-453). In all the major right to die cases on a national level in which I have testified or been heavily involved with (including Brophy, Rosebush, Torres, Cruzan, Busalacchi, Ellison, Butcher, Martin, Wendland, and now Schiavo), my neurological diagnosis and the final opinions of the courts were identical (except for some legitimate differences of opinion on the degree of cognitive functions in Wendland). So my record stands for itself.
I’ve found and read a copy of Dr. Cranford’s 1999 article about Robert Wendland. Reading the article, it is perfectly clear that Dr. Cranford considered Mr. Wendland to be in a minimally conscious state, and not in a PVS. Consider this quote from Dr. Cranford’s article:
In other words, being kept alive in the minimally conscious state may be far worse for the individual than being maintained in the vegetative state. Judge McNatt was painfully aware of this aspect of his ruling: “It still can be debated whether [Mr. Wendland's] life is being preserved or he is being sentenced to life [by my order].” In Mr. Wendland’s case, the “life sentence” is to an indefinite term in a prison of solitary confinement, unable to reach out to other persons, unable to express himself, unable to even move, possibly deeply frustrated by being stranded in a diminished life he never wanted, yet able to suffer to an extent ultimately known only by him. With the minimal degree of awareness that gives him the capacity for pain and suffering–the precise extent or nature of which is unknown to others–the minimally conscious patient potentially poses a much stronger case for allowing death than the vegetative patient does due to the principle of mercy.
Dr. Cranford is an expert, well aware of the difference between a “minimally conscious” patient and a patient in a PVS. Nor would Dr. Cranford ever describe a PVS patient as “frustrated” or “able to suffer.” Contrary to Rev. Johansen’s claim, it’s clear that Dr. Cranford described Mr. Wendland as being in a minimally conscious state, not PVS.
In addition, I’ve read both California Supreme Court decisions relating to Mr. Wendland’s case; neither one supports Rev. Johansen’s implication that there was controversy over if Mr. Wendland was in a PVS. Neither one of them supports Rev. Johansen’s implication that Dr. Cranford’s diagnosis was disagreed with by the Court.
In short, Dr. Cranford’s claim is consistant with the available evidence, whereas Rev. Johansen’s is not. Unless Rev. Johansen can produce real evidence to back up his claims about Dr. Cranford, it appears that Rev. Johansen’s most serious accusation is either incredibly irresponsible reporting or a flat-out lie.
Rev. Johansen also cites a medical review article:
Because of these difficulties, the American Academy of Neurology has made it clear that it can take months for a physician to establish with confidence the diagnosis of PVS. A 1996 British Medical Journal study, conducted at England’s Royal Hospital for Neurodisability, concluded that there was a 43-percent error rate in the diagnosis of PVS. Inadequate time spent by specialists evaluating patients was listed as a contributing factor for the high incidence of errors.
The main factor – listed in “key points” at the top of the article – that led to misdiagnosis was a severe loss of eyesight: “Many patients who are misdiagnosed as being in the vegetative state are blind or have severe visual handicap; thus lack of eye blink to threat or absence of visual tracking are not reliable signs for diagnosing the vegetative state.” There is, as far as I can tell, no evidence at all that Terri Schivo is blind or near-blind.
Nor is there any evidence that any of the patients discussed in the British Medical Journal article have CT scans or EEGs that look anything like Terri’s; none of the cases discussed in the article are described as including a misreading of scans or EEGs. Nor were any of the misdiagnosed patients examined and diagnosed by eight different neurologists, and in turn examined by at least two Courts. In short, Ms. Schiavo’s case is not at all comparable to the cases discussed in the BMJ article.
It’s notable, however, that the article – an extremely expert discussion of diagnosing PVS – no where supports Rev. Johansen’s claim that PVS cannot be diagnosed without a MRI and a PET scan. Apparently, it doesn’t bother Rev. Johansen that his hand-picked “experts” are out of harmony with the British Medical Journal article Johansen himself cited.
* * *
Reading though this article, I’m stunned by the amazing indifference to truth Rev. Johansen displays. Maybe he’s convinced himself that it’s moral to bend the truth (or to lie) in service of a higher cause; maybe he’s simply so dedicated to his cause that he’s convinced himself of things which simply aren’t true. But even if his motives were good, all he’s done is to further lower the debate into lies, half-truths, and character assassination. Nice job, National Review.
UPDATE: And also check out Riffle’s thorough post on Dr. Hammesfahr. Apparently, the good doctor has created his own “journal,” in which he publishes articles by himself.