A Life That Matters (17 page)

One day I noticed that there were goose bumps all over her. The thermostat in her room had been turned down to sixty-five degrees, and there were no covers over her. She was freezing.

And she was being fed too quickly. The velocity of her intake, which was continuous from 6:00 p.m. to 6:00 a.m., and the position in which she received her food were crucial to her digestion. Yet time after time, I’d see Terri lying horizontally while she was being fed, and the monitor of her intake showed 60 when it should have read 45. I’d push the bed up so she was sitting straight, listen to the gurgling in her throat, an indication she was getting too much food at once, and go to the nurse to complain.

“She’s supposed to lie at that angle,” was the response. But I’d prop her up all the same. In fact, no one did anything when I complained. Each time I visited, it was the same: the thermostat was down, and Terri lay or sat uncovered, as if she weren’t human, weren’t alive. Finally we went to Pat Anderson, who notified the hospice attorney. The implicit threat of a lawsuit made them raise the heat and slow the feeding.

Bob and Bobby thought the mistreatment signified more than mere lack of concern. By now, we had been receiving information from all over the country about cases similar to Terri’s. One such patient was Robert Wendland, whose lawyer had shepherded his case up to the California Supreme Court before Wendland died from pneumonia. As Bobby put it, “There are things they can do to expedite someone’s death.”

“Yeah,” Bob agrees. “Textbook. Euthanasia 101.”

Pat urged us to have someone in Terri’s room at all times—difficult to do since Michael cut down the visitors’ list and ordered no visitors unless a family member was there. One of us would have to monitor Terri—no “outsiders,” even if their names were on the list, could drop in to see her.

Then, on one horrendous day, August 14, 2003, we couldn’t see her, either. She’d been taken from the hospice. Where? We weren’t told.

Here’s Bob’s account:

“I go into the hospice. Terri’s not there. And I ask the nurse, ‘Where’s Terri?’

“‘I can’t tell you.’

“‘What do you mean you can’t tell me? My daughter’s not here. Where is she?’

“‘I’m not
permitted
to tell you.’”

“I literally pleaded with her. ‘
My God. Is she dead
?’

“‘Well, I can’t tell you.’

“‘If you had a child’—which I know she did—‘wouldn’t you want to know where she was?’

“‘I’m not permitted to tell you anything.’

“‘Where’s the administrator?’ I shouted.

“The administrator appeared. ‘What’s the problem?’

“‘I want to know where Terri is.’

“The administrator stared at me. I think I was so angry she got scared. ‘Where would you send somebody if they needed emergency treatment?’ she answered—and fled.

“I called Pat and told her Terri was in a hospital, but I didn’t know which one. I was shaking. I don’t remember being so terrified, or so angry, in my life.”

Bob and I agreed to meet at Morton Plant Hospital in Clearwater, our best guess of where she was. She had been sent there once before when her feeding tube slipped out. Suzanne picked me up, and Bobby said he would meet us there.

Pat had called Felos, who told her Terri was bleeding internally; she had pneumonia and a urinary tract infection. But that’s all he would say.

We got to the hospital around 6:30 p.m., went to the admittance office, and asked if Terri Schiavo was a patient there. They wouldn’t tell us. “Well, then,” Bob asked, “was a young woman just admitted to the hospital?”

“Yes,” they said, but wouldn’t give her name.

Suzanne stormed out of the room, demanding to go to the executive offices. “I just started to scream:
‘Somebody’s going to tell me where Terri Schiavo is and what room she’s in. I’m her sister.’
I was going in and out of the executive offices. They were all kind of whispering among themselves. ‘Just wait here,’ they said.

“I was furious. ‘No, I’m not waiting another second. My family needs to know what room she’s in. She’s ill.’ You know, just ranting and raving and yelling. I probably went into two or three more offices before I found a woman who said, ‘Hold on.’ She took my driver’s license and made a photocopy of it, then closed the door so I wouldn’t hear her conversation. When she came out, she told me what floor Terri was on, but not what room.”

The floor nurses wouldn’t tell us anything, either.
¹
Michael had banned information of any kind; not even the number of Terri’s room could be given to us. Imagine the frustration! But finally we found her room and went in.

Terri was pale and very weak, totally unresponsive.
I’ve lost her,
I thought.
All the hearings, all our battles, all our prayers. Useless.

The scene stays with Bobby like a scar. “Terri looked horrible. She was struggling. Her breathing was very labored. And I said to myself while I’m looking at her,
You know, for somebody who supposedly can’t respond, who’s been labeled PVS or brain-dead, she’s not acting like that at all. She’s clearly in extreme duress and suffering terribly from her condition.

“I felt so bad for her. I didn’t think she’d make it through the night. And part of me was, in a way, hoping that if she was suffering this much, she
would
die. But she fought like hell.”

Terri survived the night. Her breathing grew stronger. We took turns keeping her company and making sure that she was well taken care of. Bob called the doctor whose name was on the bottom of Terri’s chart, and we were able to get some information—maybe the doctor was unaware of Michael’s orders, maybe he was just a good guy. And the next day, we finally got the details from Terri’s primary doctor. The diagnosis: UTI; aspirated; pneumonia; collapsed lung; esophagus bleeding; kidney stone.

Pat immediately filed a petition in Judge Greer’s court for an emergency hearing to gain us physical access to Terri and access to information concerning her condition. Greer agreed to hear the arguments on August 21.

Then, for no apparent reason, Michael banned Suzanne and Bobby from Terri’s room. The nursing staff wouldn’t even allow Suzanne to peek in from the hallway. And he banned Terri’s spiritual adviser, Monsignor Thaddeus Malanowski, from ever seeing her again.

Monsignor Malanowski, six foot two with carefully groomed white hair—a statesman—was a weekly visitor to Terri’s hospice room for the five years she had been a patient there. A retired military chaplain, he was the only priest in the diocese who made the effort to comfort Terri and us. He was, of course, on our visitors’ list but he could not go into Terri’s room when we weren’t there.

Without our telling him, he heard that Terri was sick, and he went by himself to the hospital. The staff got hysterical and almost literally threw him out. They told him Michael had specifically banned him, claiming that he was getting medical information during his visits and was passing it on to us. Can you imagine? A monsignor! A general! Of course he wasn’t passing us information. He was simply there as a compassionate man of God who loved Terri and wanted to minister to her. The police threatened to arrest him because he wanted to administer to Terri the sacrament of Holy Communion.

The day after Terri’s doctor updated us on her condition, a second doctor told us he had received a warning from Hospital Risk Management for disclosing Terri’s medical condition—and was told never to do so again. The next day (August 19), Pat filed charges with Greer that Michael was in contempt of the 1996 court order that forced him to release Terri’s medical information to us.

On August 20, without any previous notice, Terri, who was still under treatment and very sick, was released from Morton Plant and returned to the Woodside Hospice. She shouldn’t have been.

She still had pneumonia and the UTI. Her coughing racked her body so violently I could feel it in my heart. But on August 21—and it seemed to us it couldn’t have been a coincidence—Judge Greer canceled the emergency meeting he had agreed to, on grounds that Terri was no longer in the hospital.

Four days later, she was rushed back to Morton Plant with a white-cell count of 22,000 and raging pneumonia. Pat, who told us the news, was afraid Terri would die.

Terri’s condition grew worse. Bob and I went with her to Morton Plant. Watching her was agony. She was clearly suffering; the coughing prevented her from getting any sleep; her moans were heartbreaking. Her needs were so acute we barely took note of the fact that the Florida Supreme Court announced they would not give Terri a “stay,” nor would they hear her case.
²

On August 29, though Terri was only slightly better, we were stunned when paramedics came to take her back to the hospice. We told them Terri was still seriously ill. Mr. Schiavo’s orders, they said. We were powerless to prevent them.

This time, she was in hospice for less than a day. A night nurse noticed that her oxygen level was low and sent her back to the Morton Plant emergency room. Bobby, who stayed overnight with her, told us she had trouble breathing. A few hours later, Michael again had her returned to the hospice. The cruelty of it—keeping her away from treatment—astonished us. She was like a rag doll shuttled back and forth between hospice and hospital.
She’s a human being
, I cried out. Nobody seemed to notice.

Bob and I stayed with her for an entire week. All that time she was unresponsive. But this time, she was at least given antibiotics, and her condition gradually improved.

The antibiotics were restored not on Michael’s orders, but, in effect, on Florida Governor Jeb Bush’s. With the date of the removal of the feeding tube approaching, we had stepped up our public relations efforts. Glenn Beck had been airing the facts about Terri in hospice, so the case was now an issue across the country, though it was still mostly Florida-based, a fact that could not have escaped the governor’s attention.
³
In addition, Pamela Hennessy, the invaluable organizer of Terri’s Web site, had organized a petition on the Web site, asking the governor to intervene. Within days, more than 30,000 people signed it (that number later increased to over 150,000) and also sent e-mails and faxes to the governor’s office pleading for Terri. Their phone calls shut down the circuits. And Pat, who had contacts with the governor’s attorneys, applied what pressure she could.

The result was a letter from Governor Bush:

August 26, 2003

Dear Judge Greer:

I appreciate the challenging legal and ethical issues before you in the case of Terri Schiavo . . . Our system of government has committed these decisions to the judicial branch, and we must respect that process . . .
I normally would not address a letter to a judge in a pending legal proceeding. However, my office has received over 27,000 emails reflecting understandable concern for the well being of Terri Schiavo . . . I feel compelled to write in the hopes that you will give serious consideration to re-appointment of a guardian ad litem for Mrs. Schiavo before permitting the removal of her feeding tube or other actions calculated to end her life.

This case represents the disturbing result of a severe family disagreement in extremely trying circumstances. Emotions are high, accusations abound, and at the heart of this public and private maelstrom is a young woman incapable of speaking for herself.

I am disturbed by new rumors about the guardian’s actions related to the current care of Mrs. Schiavo. It has come to my attention that Mrs. Schiavo has contracted a life threatening illness, and that she may have been denied appropriate treatment. If true, this indicates a decision by her caregivers to initiate an “exit protocol” that may include withholding treatment from Mrs. Schiavo until her death, which would
render this Court’s decision ultimately moot. While the issue of Mrs. Schiavo’s care is still before the Court, I urge you to ensure that no act
of omission or commission be allowed to adversely affect Mrs. Schiavo’s health . . .

It is a fine balance between Mrs. Schiavo’s right to privacy and her right to life, both of which are co-equal in our Constitution. To err on one side is to prolong her existence, perhaps against her wishes, and continue the debate. To err on the other is an irrevocable act that offers no remediation . . . I urge you to err on the side of conservative judgment to ensure that all facts can be uncovered and considered before her life is terminated.

I appreciate your compassion for Mrs. Schiavo’s plight, and that of her family members locked in dispute in these tragic circumstances . . .
I hope that you will consider appointing a guardian ad litem to ensure that the ultimate decision is based on facts presented clearly, unclouded and uncolored by personal interests of litigants.

Sincerely,
Jeb Bush

According to two reporters who were with Greer when the letter arrived, the judge read it, then crumpled it and threw it in the wastebasket. To us, it didn’t matter what he did with it. Terri’s medicine was once again given to her at the hospice.

And because of Jeb Bush’s involvement, the nation took notice.

The legal battle continued on other fronts. More and more attorneys were taking interest in Terri’s case. The national disability community joined our fight, filing amicus briefs on our behalf. Pat contacted Chris Ferrara, the lead attorney for National Catholic Attorneys, an expert in constitutional law used to arguing in federal court, who agreed to act for us on a pro bono basis. We thus had another important ally.

Chris is five-six or five-seven, young looking—in his late forties—and neatly dressed. Bob met him in Pat’s office and heard his own words coming from Ferrara’s mouth. “The case is an abomination,” Chris declared. “The whole thing is absolutely outrageous. When they see what Greer’s been doing, when they hear what the appellate court has said, not a federal court in the world will uphold them.”

I wished I could be as optimistic as he was. We’d heard the same kind of assurances before, only to be knocked down by whatever court was involved, including federal court. Still, Chris was dynamic and self-assured, and we watched him expectantly.