Friday, April 01, 2005

The Case of Terry Shiavo -- What Can an Autopsy Resolve?



What's the value of an autopsy of the Theresa Schiavo case? What can it show? What can’t it show?

Two areas of forensic science will be most at play here: (1) Forensic neuropathology – this involves both an overall and a microscopic examination of the brain; and (2) Any other injuries to Terry’s body which will or will not rule out (prove or disprove) the question of whether Terry was abused.

The bottom line is that forensic science is limited in the role it can play in the case of Terry Schiavo. Because satisfaction is related to expectations, it's wise to appreciate at the outset what an autospy can and cannot reveal about Terry's life.

(1) Injuries to Terry’s brain – Forensic Neuropathology:

Will an autopsy of Terry Schiavo's brain prove that Terry Schiavo was in a persistent vegetative state (PVS) and/or had reached a point of no return? The answer is, "Probaby not." The examination of Terry’s brain, either by the naked eye or under a microscope, will not reveal anything about her level of, or experience of consciousness. And, as discussed below, PVS is all about consciousness.

What will happen to Terry's brain? To begin the investigation, the brain will be removed from the skull, fixed or ‘set’ in formalin (formaldehyde) and, later, it will be cut into sections. What can be seen or learned? Usually, in cases where patients have been diagnosed as being is a persistent vegetative state (PVS), there is damage to the cortex of the patient’s brain, that is, the ‘surface’ of the brain where many of the higher functioning skills are located.

Higher functioning skills, for example, include language, abstract thought, and the ability to organize thought and control emotions. But, Jan E. Leestma, M.D., the nation’s leading forensic neuropathologist, tells us in his text books that no single injury to a PVS patient's brain (such as damage to the surface of the brain) is associated with PVS. Instead, Dr. Leestma explains, there is a group or collection of injuries. More importantly, this collection of injuries differs from person to person. One injury, alone, will not be diagnostic or dispositive of PVS.

It is important to appreciate that PVS is a diagnosis of people who are still breathing. What the pathology looks like may not have anything to do with what the person did or did not do in life. It is still not scientifically possible to correlate some physical injuries in one part of the brain to the clinical symptoms a person displayed in life. Clinical symptoms are the behaviors and actions and conditions seen in the patient when the patient is still alive. Persistent vegetative state (PVS) is based on those behaviors, actions and conditions. PVS is a state of mind and, perhaps, a state of consciousness. (Since the definition of consciousness differs this, too, is a grey area.)

The forensic bottom line is that, based on an examination of the physical injuries to the brain, alone, no one knows why some brain-injured people are said to be in persistent vegetative state (PVS) while others are not.

The physical cause of PVS is poorly understood. It is critcial to appreciate that diagnosis and causation are two entirely different phases of medical and forensic analysis and just because there is a diagnosis does not mean that there will be a definitive finding of causation. Many suggest that PVS goes beyond the physical injury and is more related to the physiological processes of the brain. In a New York Times Sunday Magazine article entitled, "What if there Is Something Going on In There?"writer Carl Zimmer relates that some doctors believe that PVS may occur because the brains of PVS patients are getting less sugar than those of us who are healthy -- note that I have not confused the issue by using the word "sane."

Is PVS caused by a biological process? Questions like these are still being studied and there are no clear answers, yet. It is true that forensic neuropathologists can look at a brain and see, for example, that speech and vision centers are damaged. But, none are able to look at a brain and say why one person, versus another, is in PVS, that is, why one person versus another is in any particular state of consciousness - or not. Consciousness is at the heart of the PVS-Schiavo-autopsy debate. Jan E. Leestma, M.D., a leading forensic neuropathology expert told me the day after Terry Schiavo passed away:

"This issue [of consciousness] has been the subject of a great of deal of science and . . . we still have a long way to go in defining consciousness and being able to correlate by external means and even "internal" (pathology) means what is there and what isn't."

Dr. Lesstma continued: "I think the neuropathological examination [of Terry Schiavo's brain], if done properly by someone who is fully aware of the literature and issues and who has the technical skills and histology laboratory back up will be quite interesting.

"Hannah Kinney, I think of Mass General, did a really good examination of the Karen Anne Quinlan brain and wrote quite a nice scholarly article on the brain pathology. I would hope that some one with those kinds of skills would work up this brain . . . but I worry that this will not happen. There are probably only a handful of neuropathologists who should examine this brain. I stress that this should be done at a place where really high quality histology -- perhaps using large window-pane sections of the brain -- is possible. Such places would be Massachusetts General Hospital or Brigham & Women's Hospital in Boston, Massachusetts, and possibly a few other places. I don't know anyone in Florida that has these facilities or capabilities.

"Whoever has the brain I hope will collaborate with somebody good. One would need many many smaller sections and fewer larger sections of the brain stained with myelin and probably axonal stains and GFAP (to show areas where glial scarring is) and be prepared to spend a hell of a lot of time with brain atlases and the microscope using sketches and computer graphics to make sense of all the information and where the lesions are. Not many folks out there are willing or able to do this."

Dr. Leestma adds: "The big issues are going to be, pathologically or physiologically, what is connected to what?"

For those just entering the PVS debate, Karen Anne Quilan was diagnosed as being in a persistent vegetative state and her parents won the right to remove her from a ventilator in 1976. Ms. Quinlan died in 1986.

What is PVS?

The diagnosis of Persistent Vegetative State (PVS) is a clinical diagnosis, meaning that it is made only for those people who are still breathing. In the U.K., the term "permanent vegetative state" is used, but it means the same thing on both sides of Atlantic.

In the U.K., unlike the U.S.A., the diagnosis of PVS is not made for up to a year. In the U.S.A., the diagnosis is made in about two weeks. According to neurlogists Adams and Ropper, it is "difficult to predict, even in the second week after onset, which patients will fall permanently into this category. " Adams and Ropper and Victor, who authored what is often called the "Bible of neurology," explain that "Plum and Posner have reported that of 45 pateints with signs of the vegetative state at 1 week, 13 awakened and 5 had satisfactory outcomes; there were 8 patients who were vegetative at 2 weeks but later awakened. However, after 2 weeks, the prognosis was uniformly poor . . . .. Nevertheless, the occurence of rare instances of late recovery in adults must be acknowledged." (See, Adams, R.D, Victor, M., Ropper, A.H., "Principles of Neurology," McGraw-Hill (6th ed., 1997, p 347, et seq.)

The clinical features are:

· Spontaneous respiration
· No life support machinery
· Body functions normally
· Sleep/awake cycles (shown on EEG and by observation)
· Swallowing, but not safely or sufficiently (hence tube feeding)
· No intellectual activity
· No rational responses
· No sentience

What do patients who are diagnosed as being in a persistent or permanent vegetative state look like? How do they act? Drs. Adams, Victor and Ropper explain:

"For the first week or two after the cerebral injury, these patients are in a state of deep coma. Then they begin to open their eyes, at first in response to painful stimuli and later spontaneously and for increasingly prolonged periods. The patient may blink in response to threat or to light and intermittently the eyes move from side to side, seemingly following objects or fixating momentarily on the physician or a family member and giving the erroneous impression of recognition. However, the patient remains inattentive, does not speak, and shows no signs of awareness of the environment or inner need; responsiveness is limited to primitive movements of the limbs. In brief, there is arousal or wakefulness, and alternating arousal-nonarousal cycles are established, but the patient regains neither awareness nor purposeful behavior of any kind. . . ."

Others believe that some in PVS are conscious and that their movements are purposeful. Clearly, that is what the parents and sister of Terry Schiavo believed. Their position is not without support in the clinical setting.

Nicholas D. Schiff, an expert in consciousness disorders at Weill Medical College of Cornell University, and his collegaues, published some remarkable research in the nurology journal Brain in 2002. Using positron emission tomography (PET), Schiff and his colleagues measured how much energy was used by the brains of some PVS patients. One woman, a 49-year-old who have been in a vegetative state for 25 years, would say something, often a curse word, every few days. While overall her brain was using less energy than the brain of a patient under deep anesthesia, some regions of her brain were running at close to normal, including the neural network that facilitates language. (See, Zimmer, C., "What If There Is Something Going on In There?", New York Times Sunday Magazine, Sept. 28, 2003, from which this description borrows heavily and is adapted for use here.)

Apparently, those words were strill producing words long after she was assumed to have lost her consciousness. Zimmer relates another of Schiff's cases:

"Another subject was a 42-year-old man who had been in a vegetative state for seven years; he would groan and clench his teeth when he was touched or heard a loud noise but appeared to be soothed on occasion by his mother's voice or soft music. Schiff discovered that one area still functioning in the man's brain was associated with listening to music and recognizing a voice's emotional inflections. And in the truly exceptional case of one 25-year-old man who exhibited no physical responses at all, Schiff found that the patient's brain used almost as much energy as that of a conscious person." Id.

What might this mean? Higher level thought exists at the surface of the brain, that is, at the "cortex." Functions such as language and memory are 'up there' in the form of layers of neurons. These neuronal networks form 'loops' and these 'loops' dip deep within the brain where they converge and return to the surface. Rodolpho Llinas of New York University theorizes that a special set of neurons deep deep in the brain synchronizes the activity of the loops of higher thought and the harmony of this synchronization creates a coherent state we call 'consciousness.' When these networks are disrupted, Schiff and his colleagues believe that the brain slips into a vegetative state. Schiff argues that even after brain damage, some of the 'loops' may still fucntion, perhaps in isolation, like fragmennts of the mind.

Despite much research, neither medical nor forensic science can describe what the "mind" is, what "consciousness" is, or what "awareness" is in the human form. And, some theologians are not moved by any attempts to define these states. For some, the soul is embodied or the body is the place of the soul, and that's all that matters in the eyes of the Creator as he sees His Creation.

Despite the existence since 1972 of diagnostic criteria for PVS, it is estimated that 43 percent of those diagnosed with “PVS” are misdiagnosed.

Schiff and his colleague, Joy Hirsch, tracked the responses of PVS patient, 24-year-old Daniel Rios, by taking MRI's while Daniel's sister spoke to him. They found that in Daniel's case sometimes his brain looked normal, and other times it did not, depending on the stimuli, and the technology used.

Daniel Rios' tragic tale, as related by NYT's writer Carl Zimmer, began when he fell into coma after a blood vessel ruptured in his brain in 1999. After three weeks, he finally opened his eyes, but he couldn't speak or move his body and his head just lolled. Daniel was taken to the Center for Head Injuries at the J.F.K. Johnson Rehabilitation Institute in Edison, New Jesery. The people who cared for him there saw little sign of meaningful mental life. Sometimes, it seemed, Daniel was crying. His best days were those when he could close his eyes on command. For the most part, writes Zimmer, Daniel "lay unresponsive, adrift in a neurological twilight."

Then, one morning about a year after his accident, Daniel was taken to the Sloan-Kettering Institute on Manhatten's East Side. Zimmer related what happened next:

"There, in a dim room, a group of researhers placed a mask over his eyes, fixed head phones over his ears and guided his head to the bore of an M.R.I. machine. A 40-second loop of a recording made by [Daniel's] sister Maria played through the headphones: she told him she loved him and that she was there with him, that she loved him. As the sound entered his ears, the M.R.I. machine scanned his brain, mapping changes in activity. Several hours afterward, two researchers, [Schiff and Hirsch], took a look at the images from a scan. They hadn't been sure what to expect -- [Daniel] was among the first people in his condition to have his brain acivity measured in this way -- but they certainly weren't expecting what they saw. 'We just stared at these images,' recalls Schiff, an expert in consciousness disorders at Weill College of Cornell University. 'There didn't seem to be anything missing.'

"As the tape of his sister's voice played, several distinct clusters of neurons in [Daniel's] brain had fired in a manner virtually identical to that of a healthy subject. Some clusters that became active were those known to help process spoken language, others to recall memories. Was [Daniel] recognizing his sister's voice, remembering her? 'You couldn't tell the difference between these parts of his brain and the brain of one of my graduate students,' says Hirsch, an expert in brain imaging at Columbia University. Even the visual centers of [Daniel's] brain had come alive, despite the fact that his eyes were covered. It was as if his sister's words had awakened his mind's eye.'"

Whether these “imaging” studies of the PVS patient’s brains are actually pictures of consciousness remains to be seen. Currently, there are an estimated 25,000 people in the United States, alone, who are diagnosed with PVS. With the advent of seat belts and air bags -- making it possible for more people to actually suvive serious car crashes -- and with improved medical technology for keeping people alive, we can expect those numbers to increase.

And, as the PVS-patient population has expanded, technology has advanced to new frontiers.

For the first time in history, we are able to look inside a person's brain using, for example, MRI's and PET scans, to measure the responses of the brain to external stimuli. For the first time in history, we have the chance to study a large sample of people who are said to be in PVS. These are the people about whom we say, "the lights are on, but no one is home." But, the truth is less clear because the question still remains: Are PVS patients mentally conscious in some way?

The definition of ‘consciousness’ differs greatly between the philosophers and theologians from east and west, it differs among neurosurgeons and it differs among neurologists, psychologists, neuropsychologistrs, psychiatrists, believers, atheists and agnostics. And, it differs between you and me.

A related question in addressing questions about how to care for PVS patients is whether consciousness is the sole, defining characteristic of human life. Medical and forensic science is not capable of answering that question. It is a question that is inherently not subject to scientific inquiry.

Terry Schiavo’s case has served to make us all aware of the need to study PVS and, hopefully, get some answers for others who are in this condition. But, the autopsy cannot take us where we want and, indeed, need to go.

What is our Duty of Care to PVS Patients?

Andrew Ferguson, M.D., who is the head of Policy, Centre for Bioethics and Public Policy, U.K., spoke about duty-of-care issues for PVS patients at a seminar in Portugal in November 2000. Here's an excerpt of what he had to say about duty of care:


  • There can be serious difficulties in diagnosis and prognosis of PVS patients. Of 40 patients in a rehabilitation unit in the U.K. who were referred to as being in the vegetative state, 17 of those (43 percent) were considered as having been misdiagnosed. . .Most were blind or severely visually impaired . . .All patients remained severely physically disabled, but nearly all were able to communicate their preference in quality of life issues -- some to a high level. . .Recognition of awareness is essential if an optimal quality of life is to be achieved and to avoid inapproriate approaches to the courts for a decelaration for withdrawal of tube feeding. (See, Andrews, K, Murphy R, Littlewood C. "Misdiagnosis of the vegetative state: retrosepctive study in rehabilitation unit ' British Medical Journal, 1996; 313:13-16.)

  • THREE KEY STANDARD-OF-CARE ISSUES NEED TO BE ADDRESSED FOR PVS PATIENTS:

  • 1. Is tube feeding medical treatment?
  • 2. Are PVS patients dead already?
  • 3. What is the intention behind the withdrawal of food and fluids?

Let's talk about these issues:

  • 1. Is tube feeding medical treatment?

Dr. Ferguson explains that the following arguments have been advanced that tube feeding is a medical treatment and, therefore, can be stopped without breaching the standard of medical care:

a. It is a medical response to pathology, namely the patient's ability to swallow or to swallow safely.

b. It uses artificial means.

The following arguments have been proposed that food and fluids are part of the basic nursing care that all patients deserve.

a. Tubes can be passed and operated by people other than doctors (e.g., nurses and family caregivers).

b. The concept of 'artifice' is potentially misleading: we bottle feed babies and use knives and forks, oursleves.

One of the nation's leading forensic pathologists told me on the day that Terry Shiavo died that he and some of his colleagues believe that the removal of feeding tubes, which caused Terry to die from starvation and dehydration, was a homicide and should be treated as such by Jon R. Thogmartin, B.S., M.D., the medical examiner with jurisdiction over Pinellas Park, Florida, where Terry died at the Woodside Hospice. This brings us to the next question.

2. Are PVS Patients Dead Already?

a. The two presently accepted concepts of death are:

1. Cessation of cardiorespiratory function

2. Brainstem death (which is completely different from PVS).

It is important to appreciate that Terry Schiavo was not brain dead. Of this topic, leading forensic neuropathologist Jan E. Leestma, M.D., observes:

"Clearly some parts of [Terry Schiavo's] brain stem were working otherwise [she] would have appeared unconscious, with eyes closed and no eye movements. Clearly she has to have major cerebral tissue loss (total paralysis of extremities) . Clearly the diencephalon and other parts of brain stem are damaged; but, how much? She might actually be like some of the chimps years ago that had their cerebral cortexes essentially removed bit by bit; Heinrich Kluever at University of Chicago did this and was amazed by how much function remained in a chimp named Lucy (this was back in the 1950s or before). "

The cases of PVS patients come to the courts, as did Terry Schiavo's case, precisley because they are not dying. If one wishes to discuss the question of whether a patient is "dead already," Dr. Ferguson lists topics that are helpful to consider:

a. Theological issues. One Law Lord commenting on the famed case of PVS patient Tony Bland, whose feeding tubes were removed by court order in 1993, stated, 'His spirit has left him and all that remains is the shell of his body.' But, Dr. Ferguson points out, "theology teaches 'ensouled bodies' or 'embodied souls.'

b. Quality of life issues.

c. 'Best interests.'

d. Whether PVS patients should be used for organ harvesting or drug testing. (Note that the U.S. Department of Health and Human Services (HHS) has a new procedure under which a patient may be induced to suffer cardiac death. Once declared dead, the patient is revived -- organs must not be deprived of oxygen if they are to be any good to an organ recipient -- and their organs are harvested.)

The time period required for diagnosis becomes critical in organ-donation cases. DCD donors are ventilated patients with do-not-resuscitate (DNR) orders where a decision has been reached by the physician and the family to withdraw life support. Organ donation does not occur until after cardiac arrest, hence the term “donation after cardiac death.” But, as we know, some people come off respirators and go into PVS. With the passage of time, the organs of a person on a respirator are no good to those who need them.

If, as HHS Director Tommy Thompson says, we are to "close the gap between organ supply and organ demand" by using the donation after cardiac death (DCD) procedure, the need to understand when PVS is permanent (spiritual debates aside) is critical. Up to the time before the DCD procedure was approved, only those who were diagnosed as being brain dead were organ donors. The DCD procedure has changed all that, and not many people, even physicians and medical examiners, are aware of its use. Last year, alone, more than 2o such cardiac deaths were induced in Boston and the organs of those people were harvested. Got to http://www.hhs.gov/news/press/2003pres/20030909.html for more information about this new procedure.

One cannot recover from brain death, but one may recover from coma, deep coma and even PVS. The DCD procedure may be used on those who are not yet brain dead and I am aware of one such case in Boston.

e. Explotation of PVS pateints -- a woman in a coma who was raped in the USA gave birth. (See, "Baby born to raped coma victim.' British Medical Journal. 1996; 312;796. )

3. What is the intention behind the withdrawal of food and fluids?

Euthenasia has been defined as the 'intentional killing by act or omission of a person whose life is felt not to be worth living,' Dr. Ferguson explains, adding, "Intention is the critical ethical and legal concept. "

In the case of Terry Schiavo, was it a question of, "Let poor Terry die," or was is a case of "Let's kill poor Terry"? It's the "Let's-kill-poor-Terry" view that some people believe has pervaded our culture transforming it into a "culture of death," where the most vulnerable -- the mentally and physically disabled -- are not being protected by our courts and legislatures.

It's a thorny issue. "From an experienced clinician's point of view," explains Dr. Ferguson, " a patient who develops pneumonia which is not treated and dies (foreseeably but not certainly), dies of pneumonia and PVS. If a patient simply has tube-delivered food and fluids withdrawn, he dies (foreseeably and certainly) of dehydration/starvation and PVS. There is an ethically significant difference."

The autopsy of Terry Schiavo cannot answer any of the above issues regarding her PVS, her consciousness or her spiritual existence.

Is it worth doing?

Yes. We can learn from this, but only if it is done thorougly, as explained by forensic neuropathologist Dr. Leestma. We know as much about the brain as we do about outer space. We know it is there, but we are not certain how it all works together. We don't know if it is orderly or chaotic, driven by sugar or by soul, or both. But, as with outer space, every small step we take is one step closer to the knowledge we need to make the right decisions -- and that is the greatest power for which we can hope.

(2) Injuries to other parts of Terry’s body -- Forensic Pathology:

Terry may have injuries to other parts of her body. Indeed, there have been allegations of abuse. This is an area not necessarily of forensic neuropathology -- although that could be relevant science here -- but most like of forensic pathology. The forensic pathologist looks at the body as a whole, usually with less of a specialized view of the brain.

The location of the injuries will be important in determining whether they are related to medical care, or not. There will be some areas that are clearly related to medical care, such as the location of any IV’s or feeding tubes. (These are termed 'iatrogenic injuries.')

Questionable injuries are those that are not located at obvious points of invasive medical care.

Let’s say, for example, that there is an injury to the sub-intimal lining of the carotid artery, an injury which would suggest an attempted strangulation. First, one would need to show, by reference to special charts that ‘date’ injuries by how much they have healed to determine approximately how old such an injury was.

Unfortunately, there is no clear science of the timing of injuries based on reference to the degree to which they have healed. One might be able to say, “days,” “weeks,” or “months.” But, one cannot point to a specific time when the injury occurred. Given that many people had access to Terry, the question of “when it was done,” cannot be clearly answered and, therefore, “who dunnit” (if there is an ‘it’) cannot be identified.

If there are any questionable injuries, one may be able to characterize injuries to Terry’s body as “abuse” injuries simply by virtue of their location. Forensic pathologists do this routinely where a person dies in a nursing home or in other long-term-care facility. But, proving who did it will be most likely impossible.

If there are any blunt-impact injuries, these could just as well be accidental as intentional. Unless there is a "pattern" injury, such as the shape of the heel of a shoe, a belt buckle, or an iron, that's one thing. But, if there's an injry in a place where Terry might have fallen, slipped or been accidentally dropped, there will be little hope of proving intentional abuse or non-accidental injury (NAI).

Thank you for reading, and I hope to write to you again soon. If you would like to e-mail me, please do so at elainesharp@sharplaw.biz but please call your e-mail "Forensic Blog Comment" or something like that so I will know what it is about.

Elaine Whitfield Sharp

Attorney at Law

196 Atlantic Avenue

Marblehead, MA 01945

781.639.1862

elainesharp@sharplaw.biz

www.sharplaw.biz

www.bostonstrangler.org

Member

American Academy of Forensic Sciences

New York Academy of Sciences

American Association for the Advancement of Sciences

American Trial Lawyers Association

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