The Terri Schiavo Case: An Exchange

To the Editors:

Ms. Didion brings the voice of the thoughtful social critic to the case of Terri Schiavo in her June 9 essay [“The Case of Theresa Schiavo”]. Nonetheless, she attributes a comment by me to bolster her argument that there were lingering doubts about Ms. Schiavo’s clinical diagnosis. Didion wrote: “According to Dr. Joseph Fins, chief of the medical ethics division at New York Presbyterian Hospital–Weill Cornell Medical Center, one study suggested that as many as 30 percent of vegetative patients studied were in fact minimally conscious.” Does this uncited point suggest that Ms. Didion and I had a conversation? That she had read a scholarly article?

In point of fact, Ms. Didion took this statement out of context from a New York Times article describing research done by colleagues on the minimally conscious state (MCS).¹ I was referring to the risk of misdiagnosis in patients who, unlike Ms. Schiavo, were not the object of heightened clinical scrutiny. Many patients with disorders of consciousness linger in nursing homes incompletely assessed or with a diagnosis that has evolved and improved since hospital discharge.

This was not the case for Ms. Schiavo, who was sufficiently evaluated by neurologists for the Florida Supreme Court to rule that there was clear and convincing evidence that she was in a persistent or permanent vegetative state.² This was substantiated by the assessment of the independent guardian ad litem, Jay Wolfson, appointed by Governor Jeb Bush.

I would hope that Ms. Didion would ascribe to the rule of law and the role of the courts in adjudicating divisive issues. Ms. Didion does a disservice to the standing of the courts—and the impartial process of clinical diagnosis—by omitting these impartial judgments from her piece. Although it is the role of the social critic to question legal authority and received medical wisdom, such skepticism comes with the cost of undermining the two learned professions upon which society depends. When the standing of the courts is questioned and clinical diagnoses are perceived as value choices and not the evidence-based assessments they are, civil society is weakened. Benjamin Cardozo summed this up in a talk to the New York Academy of Medicine while still Chief Judge of the New York Court of Appeals. He observed that medicine and the law were “united in common quest, the quest for the rule of order, the rule of health and disease, to which for individuals as a society we give the name of law.”³

As a society we should respect differences of opinion about life in a permanent vegetative state while not allowing these moral valuations to undermine an accurate diagnosis.⁴ Ethical discernment must begin with the clinical facts, lest misinformation augment the heartache of families touched by severe brain injury. Although my comments were taken out of context, they do point to the sad fact that there is the potential for patients who are minimally conscious to be misdiagnosed because of systemic barriers to proper assessment. While these obstacles were overcome given the particulars of the Schiavo case, they remain a public health challenge for other patients under less diagnostic scrutiny.⁵, ⁶, ⁷

The reasons for potential misdiagnoses of the minimally conscious state are multifactorial. First and foremost is the newness of the diagnostic category. MCS first found its way into the medical literature in 2002.⁸ The novelty of MCS is further complicated by how a patient’s diagnosis may evolve in the first months to a year after injury, depending upon the nature of the injury and its anatomy. It is now appreciated that a persistent vegetative state becomes permanent three months after anoxic injury (from oxygen deprivation) and a year following traumatic injury. In the window between the persistent and permanent vegetative states, patients can progress to the minimally conscious state (MCS).⁹, ¹⁰

Given the structure of our health care system, most patients with disorders of consciousness will be far from academic medical centers when—and if—they progress to MCS.¹¹ In those settings, the power of the initial—authoritative academic—diagnosis may be difficult to overcome in the face of episodic and inconsistent evidence of self, environment, or others which is characteristic of MCS. Notations by hopeful families who observe evidence of awareness can be too easily dismissed as wishful thinking or denial.

Such was the case of Terry Wallis, who was in a nursing home for nineteen years following traumatic brain injury before he began to speak. Though his family believed that he was aware, their requests for more complete neurological assessment were dismissed. It seems likely that he migrated from the persistent vegetative state into the minimally conscious state before it became permanent.¹² More recent examples include patients like Donald Herbert, the Buffalo, New York, firefighter.¹³

Ms. Didion’s implication that Ms. Schiavo was misdiagnosed does a disservice to some minimally conscious patients who, in contrast to the permanently vegetative, may harbor the potential for additional recovery. More nefariously, these conflations may engender false optimism for families who have loved ones who will remain permanently unconscious while fostering a therapeutic nihilism for the minimally conscious who might be helped.¹⁴

Joseph J. Fins, M.D.
Chief, Division of Medical Ethics
Professor of Medicine
Professor of Public Health
Professor of Medicine in Psychiatry
Weill Medical College of Cornell University

Director of Medical Ethics
New York Presbyterian Hospital–Weill Cornell Center
New York City

Joan Didion replies:

The New York Times piece cited, “New Signs of Awareness Seen in Some Brain-Injured Patients,” refers to Dr. Fins in the following two passages:

“This study [by a team of neuroscientists in New York, New Jersey, and Washington, D.C.] gave me goose bumps, because it shows this possibility of this profound isolation, that these people are there, that they’ve been there all along, even though we’ve been treating them as if they’re not,” said Dr. Joseph Fins, chief of the medical ethics division of New York Presbyterian Hospital–Weill Cornell Medical Center. Dr. Fins was not involved in the study but collaborates with its authors on other projects.

A better understanding of brain patterns in minimally conscious patients should also help cut down on misdiagnosis by doctors, Dr. Fins said. He said one study had found that as many as 30 percent of patients identified as being unaware, in a permanently vegetative state, were not. They were minimally conscious.

Given these passages, I am puzzled by Dr. Fins’s repeated assertion that I referred to him “out of context.” I am also puzzled by his statement that he was talking about “the risk of misdiagnosis in patients who, unlike Ms. Schiavo, were not the object of heightened clinical scrutiny.” Mrs. Schiavo was not the object of heightened clinical scrutiny. She was the object instead of heightened legal scrutiny. Until her death and subsequent autopsy she had not had a complete neurological examination in almost three years. She had never had a PET scan or an fMRI. The same New York Times piece quotes a professor of neurology at Dartmouth, Dr. James Bernat, who told the Times that “findings from studies like these would be relevant to cases like that of Terri Schiavo, a Florida woman with brain damage who has been kept alive for years against her husband’s wishes. In that case…a brain-imaging test—once it has been standardized—could help determine whether brain damage has extinguished awareness.”

Dr. Fins states that Mrs. Schiavo was “sufficiently evaluated by neurologists for the Florida Supreme Court to rule that there was clear and convincing evidence that she was in a persistent or permanent vegetative state,” a judgment “substantiated by the assessment of the independent guardian ad litem, Jay Wolfson, appointed by Governor Jeb Bush.” Jay Wolfson is not a neurologist, but a professor of law and public health at the University of South Florida.

As for the complaint that questioning “legal authority and received medical wisdom” undermines “the two learned professions upon which society depends,” and so brings about a “weakened civil society,” I would suggest only that the sturdiness of those professions rests not on any presumed infallibility but on their willingness to consider and address the very questions that Dr. Fins appears to consider best left unraised.

To the Editors:

Now that the autopsy report on this unfortunate young woman has become generally available, we wonder whether Joan Didion would care to revise the thesis she advanced in her recent article [“The Case of Theresa Schiavo,” NYR, June 9].

Briefly, the autopsy findings included extremely severe brain damage, incompatible with any desirable state of existence, and despite modern advances in management, incapable of rehabilitation or recovery. That she was also cortically blind illustrates the complexities that caring doctors encounter in helping families whose interpretations of brainstem activity are so often based on understandable hope rather than reality.

In the light of the autopsy findings, i.e., of a commonly observed bone pathology associated with prolonged immobility and bone loss—and all of this noted one and a half decades ago—we find it particularly egregious that Didion, if not asserting belief or disbelief in the accusations, repeated allegations of physical abuse against Schiavo’s husband.

Clearly Didion’s essay was an expression of a sincerely held view on life, but in the light of the facts, would she now care to modify her advice to doctors and families; or, like the unfortunate young woman’s parents, does she feel she has a sufficient command of complicated neurological conditions to refuse to accept the two pathologists’ findings?

T.A. Madden, M.D.
Emeritus Senior Attending
Rush University Medical Center
Chicago, Illinois

D.C. Bergen, M.D.
Professor of Neurological Sciences
Rush University Medical Center
Chicago, Illinois

Joan Didion replies:

My intention was neither to “advance a thesis” nor to give “advice to doctors and families.” I wanted instead to examine the way in which the inflammatory climate surrounding this case had led to a general hardening of convictions based on thin or no evidence. Such hardened convictions extend now even to the reaction to the autopsy findings, which were widely received as “proof” that Mrs. Schiavo’s brain damage had resulted in a persistent vegetative state, which was in turn “proof” that the decision to withhold food and hydration had been justified. As the pathologists who performed the autopsy stated clearly, the diagnosis of a persistent vegetative state is clinical, i.e., based on observation of a living patient, and so cannot be determined by autopsy. In a CNN interview on the day the autopsy results were made public, the chairman of neurosurgery at Emory, Daniel L. Barrow, M.D., addressed this point:

I think what the autopsy demonstrated …was that there was marked atrophy or shrinkage of the brain. And that really serves, I think, as a surrogate for determining the amount of brain damage. There is not a clear correlation at all between the size of a human brain and its function…. I think [the extent of atrophy] supports the clinical impression of those who felt that she was in a persistent vegetative state, but it certainly does not prove that.

Dr. Madden and Dr. Bergen describe Mrs. Schiavo’s condition as presented in the autopsy findings as “incompatible with any desirable state of existence.” This is not a judgment I would attempt to make, which is by no means to say that I “refuse to accept” the autopsy findings. Of course I accept those findings. They neither originated in a courtroom nor ventured to designate “desirable states of existence,” as did so much else in this case.