Based on my review of extensive medical records documenting Terri’s case over the years, on my personal observations of Terri, and on my observations of Terri’s responses in the many hours of videotapes taken in 2002, she demonstrates a number of behaviors that I believe cast a reasonable doubt on the prior diagnosis of PVS. These include:
1. Her behavior is frequently context-specific. For example, her facial expression brightens and she smiles in response to the voice of familiar persons such as her parents or her nurse. Her agitation subsides and her facial demeanor softens when quiet music is played. When jubilant piano music is played, her face brightens, she lifts her eyebrows, smiles, and even laughs. Her lateral gaze toward the tape player is sustained for many minutes. Several times I witnessed Terri briefly, albeit inconsistently, laugh in response to a humorous comment someone in the room had made. I did not see her laugh in the absence of someone else’s laughter.
2. Although she does not seem to track or follow visual objects consistently or for long periods of time, she does fixate her gaze on colorful objects or human faces for some 15 seconds at a time and occasionally follow with her eyes at least briefly as these objects move from side to side. When I first walked into her room, she immediately turned her head toward me and looked directly at my face. There was a look of curiosity or expectation in her expression, and she maintained eye contact for about half a minute. Later, when she again looked at me, she brought her lips together as if to pronounce the letter “O,” and although for a moment it appeared that she might be making an intentional effort to speak, her face then fell blank, and no words came out.
3. Although I did not hear Terri utter distinct words, she demonstrates emotional expressivity by her use of single syllable vocalizations such as “ah,” making cooing sounds, or by expressing guttural sounds of annoyance or moaning appropriate to the context of the situation. The context-specific range and variability of her vocalizations suggests at least a reasonable probability of the processing of emotional thought within her brain. There have been reports of Terri rarely using actual words specific to her situational context. The July 25, 2003 affidavit of speech pathologist Sara Green Mele, MS, on page 6, reads, “The records of Mediplex reflect the fact that she has said ‘stop’ in apparent response to a medical procedure being done to her.” The Adult Protective Services team has been unable to retrieve those original medical records in this instance.
4. Although Terri has not consistently followed commands, there appear to be some notable exceptions. In the taped examination by Dr. Hammesfahr from 2002, when asked to close her eyes she began to blink repeatedly. Although it was unclear whether she squeezed her grip when asked, she did appear to raise her right leg four times in succession each time she was asked to do so. Rehabilitation notes form 1991 indicated that she tracked inconsistently, and although did not develop a yes/no communication system, did follow some commands inconsistently and demonstrated good eye contact to family members.
5. There is a remarkable moment in the videotape of the September 3, 2002 examination by Dr. Hammesfahr that seemed to go unnoticed at the time. At 2:44 p.m., Dr. Hammesfahr had just turned Terri onto her right side to examine her back with a painful sharp stimulus (a sharp piece of wood), to which Terri had responded with signs of discomfort. Well after he ceased applying the stimulus and had returned Terri to a comfortable position, he says to her parents, “So, we’re going to have to roll her over…” Immediately Terri cries. She vocalizes a crying sound, “Ugh, ha, ha, ha,” presses her eyebrows together, and sadly grimaces. It is important to note that, at that moment, no one is touching Terri or causing actual pain. Rather, she appears to comprehend the meaning of Dr. Hammesfahr’s comment and signals her anticipation of pain. This response suggests some degree of language processing and interpretation at the level of the cerebral cortex. It also suggests that she may be aware of pain beyond what could be explained by simple reflex withdrawal.
6. According to the definition of PVS published by the American Academy of Neurology, “persistent vegetative state patients do not have the capacity to experience pain or suffering. Pain and suffering are attributes of consciousness requiring cerebral cortical functioning, and patients who are permanently and completely unconscious cannot experience these symptoms.” And yet, in my review of Terri’s medical records, pain issues keep surfacing. The nurses at Woodside Hospice told us that she often has pain with menstrual cramps. Menstrual flow is associated with agitation, repeated or sustained moaning, facial grimacing, limb posturing, and facial flushing, all of which subside once she is given ibuprofen. Some of the records document moaning, crying, and other painful behavior in the setting of urinary tract infection.
The neurologic literature has traditionally distinguished between, on one hand, the patterned reflex response resulting form mere activation of spinal and brain stem pain circuits in PVS and, on the other hand, conscious awareness of pain which requires participation by the cerebral cortex, including interpretation, felt emotional awareness, and volitional avoidance behavior that would not be expected to occur in PVS. Recent studies suggest, however, that such a distinction may not be the clear bright line previously imagined. Laureys and colleagues demonstrated, for example, neuronal processing activity in the primary somatosensory area of the cerebral cortex in response to noxious stimuli in patients with PVS.
Regardless of what objective measures may be available, the conscious experience of pain remains a phenomenon directly discernable only trough introspective awareness, which means that one cannot directly know with certainty the pain another person experiences. If, as the authors of a consensus statement on PVS wrote in 1994, there are some cases in which “the absence of a response cannot be taken as proof of the absence of consciousness,” then should not the clear presence of pain be given serious consideration as possibly indicating conscious awareness of Terri Schiavo? The fact that Terri’s responses to pain have been context-specific, sustained, and in the taped example I cited, in response to a spoken sentence, all suggest the possibility that she may be at some level consciously aware of pain.
Terri has received analgesic medication as treatment for her pain behavior. This seems to be appropriate medical treatment if one cannot know with certainty whether her behavior indicates conscious awareness of pain. If a patient behaves as if in pain, then the clinically prudent and compassionate response, when in doubt, is to treat the pain. If a patient behaves at times as though there may be some remnant of conscious awareness, then the clinically prudent and compassionate response, when in doubt is to treat that patient with respect and care. If Terri is consciously aware of pain, and therefore is capable of suffering, then her diagnosis of PVS may be tragically mistaken.
7. To enter the room of Terri Schiavo is nothing like entering the room of a patient who is comatose or brain-dead on in some neurological sense no longer there. Although Terri did not demonstrate during our 90-minute visit some compelling evidence of verbalization, conscious awareness, or volitional behavior, yet the visitor has the distinct sense of the presence of a living human being who seems at some level to be aware of some things around her.
As I looked at Terri, and she gazed directly back at me, I asked myself whether, if I were her attending physician, I could in good conscience withdraw her feeding and hydration. No, I could not. I could not withdraw life support if I were asked. I could not withhold life-sustaining nutrition and hydration from this beautiful lady whose face brightens in the presence of others.
The neurologic signs are in many ways ambiguous. There is no guarantee that more sophisticated testing would definitively resolve that ambiguity to everyone’s satisfaction. There would be value, I think, in obtaining a functional MRI scan if that is possible.
This situation differs fundamentally from end-of-life scenarios where it is appropriate to withdraw life-sustaining medical interventions that no longer benefit or are burdensome to patients in the terminal stages of illness. Terri’s feeding tube is not a burden to her. It is not painful, it is not infected, is not eroding her stomach lining or causing any medical complications. But for the decision to withdraw her feeding tube, Terri cannot be considered medically terminal. But for the removal of food and water, she would not die.
In summary, Terri Schiavo demonstrates behaviors in a variety of cognitive domains that call into question the previous neurologic diagnosis of persistent vegetative state. Specifically, she has demonstrated behaviors that are context-specific, sustained, and indicative of cerebral cortical processing that, upon careful neurologic consideration, would not be expected in a persistent vegetative state.
Based on this evidence, I believe that, within a reasonable degree of medical certainty, there is a greater likelihood that Terri is in a minimally conscious state than a persistent vegetative state. This distinction makes an enormous difference in making ethical decisions on Terri’s behalf. If Terri is sufficiently aware of her surroundings that she can feel pleasure and suffer, if she is capable of understanding to some degree how she is being treated, then in my judgment it would be wrong to bring about her death by withdrawing food and water.
