by David Gibbs
Terri appeared to be enjoying her interaction with Suzanne and Barbara. She laughed at all the right times and was paying close attention to what was going on in her room. I could see that this was one of Terri’s ‘‘good’’ days, as the family often rated them.
After a number of minutes of encouraging Terri not to lose hope, that we were doing everything in our power to prevent the feeding tube from being removed, and that millions of people around the world were praying for her, her spiritual advisor of many years arrived for what I sincerely hoped would not be his last visit. Satisfied that he had been able to gain entry, I moved into the hallway to confer with other arriving family members and with Michael’s attorney. I promptly retraced my steps through security and the crowds to my car and then raced back to the office.
When I arrived, the attorneys from Congress were waiting for me in our conference room. With the morning rapidly slipping away, we pored over last-minute preparations to present the congressional subpoenas in what we had hoped would be a hearing with Judge Greer. One problem: Nobody could locate the judge. The best we could figure was that he was out of town for his own safety and security. Someone suggested that we conduct the hearing by phone rather than in court. But that still required us to find Judge Greer.
Rather than risk not being able to discover his whereabouts in time, we contacted Chief Judge David Demers of the Sixth Judicial Circuit Court. We explained our predicament. Judge Demers, in turn, ruled that Terri’s food and water could not be removed until we had a hearing on the matter in light of the congressional subpoenas. For the moment, it appeared that we had a much needed late-morning victory with this new judge. The feeding tube would stay in—for now.
Lunch was brought in for our guests. As we talked, ate, and worked, the phone rang. Judge Greer was on the line. Clearly, he didn’t sound happy. I couldn’t tell if he was upset that Judge Demers had temporarily blocked his orders to remove Terri’s food and water or if he was merely displeased about the need for another hearing.
Whatever the reason for his unsettled demeanor, he allowed the attorneys from the House of Representatives to argue their case. As they presented the subpoenas and the basis and rationale for a stay, I prayed. We needed a break and we needed it right then. I thought they did a fantastic job laying out the facts. I believed we might just have a shot at protecting Terri.
After this hearing I later heard rumors that Judge Greer had been encouraged to take his time with this hearing and to go along with the congressional subpoenas. After all, there were big issues on the table, not the least of which was the matter of states’ rights versus federal rights. With the entire world watching, what would be wrong with taking a few more days? But Judge Greer was not inclined to allow anyone else to take charge of his case; instead, he called us and conducted the hearing by telephone himself.
When the Washington, D.C., attorneys had finished making their legal presentation, Judge Greer unloaded both barrels: He rendered a scathing judgment against them. He made it absolutely clear that he would not wait another day, let alone a week, before her feeding tube was removed just for Terri to go to the nation’s capital for a hearing. Judge Greer was insistent. He said, ‘‘My order will be upheld. The feeding tube will be removed at one PM,’’ and then he abruptly hung up.
My heart sank.
As if that setback wasn’t damaging enough, we also received devastating news on another front: The DCF was not going to send marshals to take Terri into protective custody. That meant the D.C. attorneys sitting across from me now had an urgent decision to make: Would they hold Judge Greer in contempt of Congress for ignoring their subpoenas? Could he, in fact, go to jail for ignoring a legitimate congressional subpoena?
As we were starting to discuss those issues, my phone rang. It was Barbara Weller at the hospice. To say she was excited would be an understatement. Her words ran together as if she couldn’t spit them out fast enough. She said, ‘‘David, you’ve got to hear this—you won’t believe what just happened!’’
‘‘Sure, Barbara. What’s up?’’
‘‘Not long after you left, I went over to Terri’s chair and—’’ Noticing the time, I interrupted her. ‘‘Is she being fed right now?’’
‘‘Yes, they started feeding her around eleven. But listen, David,’’ she said. ‘‘I leaned over and took Terri’s arms in both of my hands and said to her, ‘Terri, if you could only say I want to live, this whole thing could be over today.’ ’’ Barbara continued. ‘‘I pleaded with Terri to just try to say those words. You’ll never believe what happened. Terri’s eyes opened real wide. She looked me square in the face. She had this look of intense concentration—’’ I found myself inching toward the edge of my seat.
‘‘David, Terri actually said, ‘Ahhhhhhh.’ And then, seeming to summon up all of the strength that she had, she virtually screamed, ‘Waaaaaaaa’ . . . She yelled so loudly that we all heard her—even Suzanne’s husband and the police officer standing outside of Terri’s door heard her.’’
Was this the breakthrough we had been praying for? I found myself gripping the phone in my hand. ‘‘Barbara, did she finish the sentence?’’ Barbara took a moment to collect her thoughts. ‘‘All I can say, David, is that she had this terrible look of anguish on her face. I can’t say I’ve ever seen her appear so troubled. She seemed to be struggling to form the next word, but the word wouldn’t come out. It was a consonant. You know Terri can’t say consonants.’’
My head pounded with the implications. I removed my glasses and massaged my temples. I could imagine the scene back in Terri’s room. A fully alive, spirited yet handicapped woman, who had been thrust into the center of the world’s attention, was trying to speak. Yes, there was no doubt in my mind that what Barbara had just witnessed was Terri’s last-ditch effort to communicate her own wishes. But given the tone of the conversation with Judge Greer, I was convinced even this event wouldn’t change his heart.
‘‘What happened next?’’
Barbara fought to control her emotions. ‘‘Terri became very frustrated and started to cry. I didn’t mean to cause her such anxiety—I just thought . . .’’
Her words drifted off. ‘‘Look, Barbara, you did the right thing.’’ At this point, the others in the conference room searched my face for some clue as to what was transpiring.
‘‘While Suzanne and I comforted Terri,’’ Barbara continued, ‘‘I promised Terri I’d tell the world that she did her best to say, ‘I want to live.’ ’’ Barbara then asked if I thought it would be okay for her to hold an impromptu press conference with the hundreds of reporters waiting outside the hospice. She thought retelling her encounter with Terri might do some good. I couldn’t see a downside, so I encouraged her to do whatever seemed best at her end.
In fact, a few days before Terri died, we even presented this information to Judge Greer in one last hearing, arguing that Terri had been trying to express her own wishes about her feeding tube. George Felos argued that Terri was in PVS and, therefore, incapable of that sort of purposeful interaction. Judge Greer bought his argument and denied our motion.
After Barbara and I had finished our phone conversation, heaviness settled on my spirit. Doors were being closed faster than we could find new ones to open. While I knew Barbara would be holding a press conference to share what had just happened, I turned my efforts to what I felt was our best bet: getting the lawyers to agree to hold Judge Greer’s feet to the fire. In my view, for a judge to ignore the wishes of the federal government demanded a firm response. They asked me to give them some privacy while they called Washington, D.C., for direction.
I stepped outside the conference room and attempted to catch up with the endless stream of phone messages. Ten minutes later the attorneys waved me back to the table. Even before they spoke I could tell by their body language that the news wasn’t going to be good. It wasn’t. Rather than initiating a contempt process, they had been instructed to go through the regular appeals process.
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I argued that the appeals pathway would be slow and most likely not effective in saving Terri’s life.
I argued in vain.
With all of our current options exhausted, Terri’s feeding tube was removed at 1:45 PM.
CHAPTER TWELVE
THE BIG LIE
When I close my eyes at night, all I can see is Terri’s face in front of me dying, starving to death. Please, someone out there, stop this cruelty. Stop the insanity. Please let my daughter live.
—MARY SCHINDLER1
Acurious thing happened the moment Terri’s feeding tube was withdrawn: I call it starvation spin control. As they had done twice before when Terri’s feeding tube had been removed, Michael Schiavo and George Felos worked overtime to put a happy face on this uncivilized practice. Eight days after Terri had been without food or water, Mr. Felos emerged from the hospice and gushed, ‘‘In all the years I’ve seen Mrs. Schiavo, I have never seen such a look of peace and beauty upon her.’’2
What was his implication? That Terri was better off being starved than being fed?
Michael, during an appearance on Nightline, glibly dismissed the notion that starvation is painful, saying, ‘‘That’s one of [the Schindlers’] soapboxes they’ve been on for a long time.’’
Soapboxes?
Then, in what can only be viewed as a desperate rationalization, Michael claimed, ‘‘This happens across the country every day.’’ Unfortunately, that is true. But what Mr. Schiavo and those who use that excuse fail to grasp is that medical treatment decisions made for patients do not make the practice of dehydrating and starving an otherwise healthy but disabled woman morally right. He quickly added, ‘‘Death through removing somebody’s nutrition is very painless.’’3 Anxious to lend their endorsement of this highly controversial, public starvation, the New York Times sided with Michael Schiavo’s efforts. Two ‘‘medical experts’’ were lined up to bolster their editorial position, namely, that withholding food and water ‘‘is relatively straightforward, and can cause little discomfort.’’4 How can the Times be so sure starvation is pain free? They cited a Dr. Linda Emanuel, who founded something called the Education for Physicians in End-of-Life Care Project at Northwestern University. Dr. Emanuel made a vague reference to ‘‘the data that is available’’ and concluded that starvation ‘‘is not a horrific thing at all.’’5 Really?
It might be interesting to test out her theory in Rwanda, Ethiopia, Sri Lanka, Uganda, or any one of the world’s impoverished lands ravaged by drought and famine. I’m sure those suffering with empty stomachs and parched lips would be astonished to hear that anyone could think their daily plight is not ‘‘horrific.’’
Adding insult to injury, the Times quoted a professor from Mount Sinai School of Medicine in New York as saying, ‘‘They generally slip into a peaceful coma. It’s very quiet, it’s very dignified—it’s very gentle.’’ Again, I’m fairly confident most compassionate persons would not call the photos of starving people around the globe—nor what we saw of Terri as her body shriveled away—‘‘dignified’’ or a ‘‘gentle’’ way to die.
Why, then, apply such disingenuous adjectives?
I believe there are dual purposes at work here.
First, the Times wanted to assuage our social conscience for what was being inflicted upon this disabled woman. In other words, if Americans could be convinced that Terri felt no discomfort, we might be willing to accept the barbaric method of her death. Which plays perfectly into one of their frightening positions: advancing the pro-euthanasia, or so-called ‘‘death with dignity’’ movement.
Whatever their motivation for running a ‘‘news’’ story that failed to introduce an opposing point of view, the question remains: Does starvation lead to a ‘‘painless’’ or ‘‘gentle death’’ as argued by the Times?
Dr. James H. Barnhill would think so. He’s the neurologist and ‘‘expert witness’’ used by attorney George Felos in this and other ‘‘right-to-die’’ cases. The first time Terri’s feeding tube was removed in 2001, Dr. Barnhill explained his belief that Terri felt no pain to Greta Van Susteren on CNN’s Burden of Proof:
VAN SUSTEREN: To the best of your medical knowledge, can she feel pain?
BARNHILL: Not feel pain in the sense that she has consciousness of it, but react to pain in the sense that there are reflexes that will be provoked in response to pain. Similarly, if you step on a nail, you will move your foot before you have awareness that you have pain.
VAN SUSTEREN: If you remove this feeding tube, in essence, she will starve to death. Is that a kind of pain that she could feel in her state?
BARNHILL: Actually, she won’t starve to death. What will happen is there will be initially dehydration. There will be chemical changes in the electrolytes— the sodium, the potassium. And generally, death will ensue from complications related to the dehydration and the chemical imbalances before someone starves to death.
VAN SUSTEREN: Okay, dehydration, I assume, is some level of pain to someone who is—I mean, unless you’re in a particular state. Is she likely to feel the discomfort from that?
BARNHILL: No. As people dehydrate—and unfortunately I’ve seen this many times—they just kind of go to sleep. They become less conscious— or since she’s not conscious, that’s maybe not the right [word]—they’re less alert and gradually become unresponsive.6
You can almost feel Greta’s exhaustion from Dr. Barnhill’s verbal gymnastics after three attempts to get a direct answer. Perhaps a more credible—and certainly a more compelling—viewpoint would be to hear from someone who, like Terri, was once diagnosed as being without hope of recovery and who, like Terri, had experienced eight days without sustenance, but who differs from Terri in that she lived to tell about it.
I’m referring to the incredible testimony of Kate Adamson.
NOTHING BUT SHEER TORTURE
At age thirty-three, Kate Adamson, a remarkable, healthy young mother of two, was in the prime of her life. Without warning, a near-fatal and massive stroke left her categorically unresponsive. She was rushed to the hospital, placed on life support, a feeding tube, and a ventilator. After performing an emergency tracheotomy, her doctors gave Kate no hope of surviving. Her husband, Steven, disagreed. He insisted that his bride would recover despite seemingly impossible odds. In fact, a notation was made in Kate’s medical records suggesting Steven was delusional. Why?
Because he wouldn’t give up on Kate.
Completely paralyzed, Kate remained in the intensive care unit for approximately seventy days. Each day initially brought with it a contest of wills: Husband Steven valiantly fought for medical treatment. The hospital and the insurance company pushed to cut their losses. After all, she was nonresponsive, unable to communicate. Nothing would change that. Ever. But Steven refused to walk away and, instead, literally set aside his successful legal practice to remain at her side. Likewise, their church rallied behind them, providing an around-the-clock prayer vigil in the hospital waiting room as well as sacrificial help with meals and other obligations at home.
Several months passed.
Still no progress.
The doctors initially pressured Steven to let Kate die. They predicted— on the off chance that Kate should beat the one in a million odds of survival—she’d remain a vegetable hooked up to machinery for the next fifty years. Steven wasn’t buying what they were selling. His faith was unwavering. As he hovered close to pray over his comatose wife, something happened.
She wiggled the tip of one finger.
At first the nursing staff and doctors insisted Steven was just seeing what he wanted to see. Kate was incapable of responding, her doctors maintained. Incidentally, doctors told Terri Schiavo’s parents the same thing—that they were only imagining Terri’s responsiveness. (I saw it with my own eyes, and I know she was responsive, as did my colleague Barbara Weller.)
The medical team was completely baffled when, in time, Kate regained the ability to eat, speak, and walk. Tod
ay, Kate travels widely to address crowds of thousands with her inspirational message of hope. One of her opening statements is this: ‘‘The only difference between me and Terri Schiavo is I had a husband who loved me and wouldn’t give up on me.’’
As you might expect, Kate has deep feelings about the tug-of-war over Terri Schiavo. She should. Like Terri, Kate had been diagnosed as having no chance of recovery—let alone a meaningful life as a nationally acclaimed public speaker. Like Terri, at one point in her ordeal Kate had her feeding tube removed for eight days. What’s more, Kate reports that not only did she endure unspeakable pain, she was totally aware of everything going on around her.
In her book, Kate’s Journey: Triumph Over Adversity, Kate reveals what went through her mind while her doctors discussed her fate with husband, Steven:
I’m treated as if I’m a dead person already. Why are people talking in front of me as if I’m not here? I can hear and understand everything being said.7
Unfortunately, like Terri, Kate had no means of vocalizing her thoughts or wishes. Come to think of it, at least Terri was able to make her ‘‘lemon face’’ when anticipating the tickle of her dad’s mustache and cry when her mother left the room. Kate was paralyzed and had no outward contact with her world. She was ‘‘locked in,’’ utterly alone with her thoughts, her feelings, and her fears.
What about the question of pain?
Did Kate feel anything after the doctors suspended her nutrition? Was she thirsty? Did she crave food? Or are Michael Schiavo, George Felos, and the New York Times right when they claim starvation is a ‘‘painless,’’ ‘‘gentle’’ way to die? Here’s Kate’s exchange with Bill O’Reilly, host of The O’Reilly Factor:
O’REILLY: When they took the feeding tube out, what went through your mind?