A Heart to Serve

by Bill Frist

  My next question was: If indeed Terri Schiavo clearly had no hope of being rehabilitated, did she have a living will, a written directive describing her wishes? I discovered that she did not. My interest piqued, I asked my staff to pull all of the court documents so that I could review them. I also called Dr. Hammesfahr, who had been the last neurologist to examine her, and he reiterated his expert opinion that Terri was definitely not in a persistent vegetative state. I talked with Terri’s family members and met personally with her brother, and they told me of her reactions when they were with her. They told me that despite their willingness to care for Terri, physically and financially, their efforts had been blocked by the courts, thus leaving them no more options.

  As the clock ticked toward the time when Terri’s feeding tube would be removed, I consulted with Senators Mitch McConnell, Rick Santorum, and Democratic senators Harry Reid, Tom Harkin, and Kent Conrad. House Majority Leader Tom DeLay and his leadership team had led on bringing the Schiavo case to the level of congressional consideration. A bipartisan group of senators agreed the case warranted Senate consideration. Senator Conrad of North Dakota said of Schiavo, “Her parents want to give her a chance. I think of my own daughter. We ought to give her a chance.” Democratic senator Bill Nelson said he supported the Senate bill “so that this case can be reviewed and decided in a timely manner.” And Democratic senator Tom Harkin, an advocate for the rights of people with disabilities and the author of the original American with Disabilities Act, said, “It is my belief that people with disabilities and those who are incapacitated deserve the utmost dignity and respect. I plan to work with my Senate colleagues on both sides of the aisle to give cases like this an opportunity for further review in federal courts.”

  On Wednesday evening, March 16, I spent more than an hour in my Capitol office reviewing copies of the videotapes—the same ones that the court and doctors who evaluated Terri had seen, and not the clips shown again and again on the cable networks. These were not Schiavo or Schindler family home movies; the portions of video I watched included a neurologist conducting clinical tests to determine Terri’s condition. After reviewing the video footage and after talking with the neurologist who had carefully examined her and concluded the diagnosis of persistent vegetative state was wrong, I was unconvinced that Terri was definitely in a persistent vegetative state. When the data is unclear, you err on the side of life.

  On Thursday morning, I opened the Senate for business and made a statement regarding Terri. The members of the House of Representatives had for several days been considering a bill that would allow the case to be heard by a federal court, thus paving the way for Terri to be re-evaluated clinically by independent neurologists using modern structural imaging techniques. This would answer the questions raised in my mind. I knew that the Senate could pass something similar. Speaking to my colleagues about the fast-track debate regarding the Schiavo issue, I said:

  As most people know, this is coming to the floor very quickly, and the real, fundamental reason is, if we do not act, there is a good chance that a living human being would be starved to death in a matter of days. That is why the action now. That is why we are not rushing things, but deliberating quickly, so we can get it to the House of Representatives.

  She will be starved to death next Friday. I had the opportunity to look at the video footage upon which the initial facts of this case were based. And from my standpoint as a physician—I would be very careful before I would come to the floor and say this—that the facts upon which this case were based are inadequate. To be able to make a diagnosis of persistent vegetative state—which is not brain-dead; it is not coma; it is a specific diagnosis and typically takes multiple examinations over a period of time, because you are looking for responsiveness. I have looked at the video footage. Based on the footage provided to me, which was part of the facts of the case, she does respond.

  That being the case, and also recognizing she has not had a complete neurological exam by today’s standards—allegedly, she has not had a PET scan or MRI scan; not that those are definitive, but before you let somebody die, before you starve somebody to death, you want a complete exam and a good set of facts of the case upon which to make that decision. All we are saying today is, do not starve her to death now—forever, I would argue—but establish the facts based on medical science today, and then make a determination in the future. That is what we will accomplish with [the] passage of this bill.

  Fully aware that the U.S. Senate should rarely if ever get involved in private-action cases, I pondered what we might do. Florida senator Mel Martinez and Pennsylvania senator Rick Santorum worked to design a narrow bill, aimed specifically at the Schiavo case, which would allow Terri to be evaluated by independent neurologists with modern imaging techniques before a final decision was made. Essentially the bill said, “Let’s make absolutely sure the diagnosis is correct before terminating her existence.” This approach was rejected by the House, where the call for action was growing to a fevered pitch.

  Later that night, I returned to the Senate floor as usual to close the business day. As leaders often do in the Senate, I took the opportunity to make remarks of my own. I quickly pointed out that I was speaking more as a physician than as a senator, as I outlined the Terri Schiavo saga as I understood it. At several points in the speech, I raised the question of whether we were sure she was in a persistent vegetative state. And then, in a portion of the speech that would be quoted, paraphrased, and distorted, I said:

  Persistent vegetative state, which is what the court has ruled—I say that I question it, and I question it based on a review of the video footage which I spent an hour or so looking at last night in my office here in the Capitol. And that footage, to me, depicted something very different than persistent vegetative state.

  One of the classic textbooks we use in medicine today is called Harrison’s Principles of Internal Medicine. In the sixteenth edition, which was published just this year, 2005, on page 1625, it reads: “The vegetative state signifies an awake but unresponsive state. These patients have emerged from coma after a period of days or weeks to an unresponsive state in which the eyelids are open, giving the appearance of wakefulness.” This is from Harrison’s Principles of Internal Medicine. This “unresponsive state in which the eyelids are open”—I quote that only because on the video footage, which is the actual exam by the neurologist, when the neurologist said, “Look up,” there is no question in the video that she actually looks up. That would not be an “unresponsive state in which the eyelids are open.”

  Skipping on down to what the Harrison’s textbook says about vegetative state, I quote: “There are always accompanying signs that indicate extensive damage in both cerebral hemispheres, e.g. decerebrate or decorticate limb posturing and absent responses to visual stimuli.” And then, let me just comment, because it says: “absent responses to visual stimuli,” once again, in the video footage—which you can actually see on the website today—she certainly seems to respond to visual stimuli that the neurologist puts forth.

  And lastly—I’ll stop quoting from the classic internal medicine—one other sentence: “In the closely related, minimally conscious state, the patient may make intermittent, rudimentary vocal and motor responses.”

  I would simply ask, maybe she is not in this vegetative state and she is in this minimally conscious state, in which case the diagnosis upon which this whole case has been based would be incorrect. Fifteen neurologists have signed affidavits that Terri should have additional testing by unbiased, independent neurologists. I am told that Terri never had an MRI or a PET scan of her head, and that disturbs me only because it suggests that she hasn’t been fully evaluated by today’s standards. You don’t have to have an MRI scan or a PET scan to make a diagnosis of persistent vegetative state, but if you are going to allow somebody to die, starve them to death, I would think you would want to complete a neurological exam. She has not had an MRI or PET scan, which suggests she has not had a full
neurological exam.

  I continued by quoting the British medical journal article concluding there was a 43 percent chance of error in diagnosing persistent vegetative state. “If you are going to be causing somebody to die with purposeful action, like withdrawal of the feeding tube, you are not going to want to make a mistake in terms of the diagnosis. At this juncture, I don’t see any justification in removing hydration and nutrition. Prudence and caution and respect for the dignity of life must be the undergirding principles in this case.”

  The extraordinary measure of the U.S. Congress intervening in a private case was controversial even among some of my own staff members. As we discussed it, I emphasized, “Let’s find a way to give Terri’s parents one more shot to keep their daughter; that’s all we’re saying. We are not dictating the results; we are simply saying ‘Let’s be sure of the diagnosis.’”

  On March 20, I spoke again on the Senate floor about the bill intended to give Terri another chance at life. The bill we passed centered on the sanctity of human life. It was bipartisan and bicameral legislation, passing by unanimous voice vote in the Senate and by a vote of 203 to 58 in the House. President Bush was in Texas at the time, so he flew back to Washington and signed the bill at 1:11 A.M.

  The decision evoked a lot of discussion because the bill forced Terri’s case to be heard in a federal court. This legislation simply permitted a federal district judge to consider a claim on behalf of Terri for alleged violations of constitutional rights or federal laws relating to the withholding of food, water, or medical treatment necessary to sustain her life.

  While the bill guaranteed a process to help Terri, it did not guarantee a particular outcome. Once the new case was filed, a federal district judge could issue a stay at any time, allowing Terri to be fed once again. The judge had discretion on this decision. I fully expected a federal judge would grant a stay of the state court’s order to remove the feeding tube under these circumstances because for the court to even consider the case Terri had to be alive. If the new suit went forward, the federal judge would have to conduct a de novo review of the case, which means the judge could look at the case anew, not relying on the decisions of previous judges. The judge could also make new findings. Practically, this meant that in a new case, the judge could re-evaluate and reassess Terri’s medical condition.

  Almost immediately after my statements on the Senate floor, my office was inundated with responses from the public, mostly positive, but some scathingly hostile. Nick Smith, in my communications office, was dogged by perverse e-mails, showing ludicrous photos and taunting, “Senator Frist, diagnose this!” Others accused us of pandering to conservative right-to-life groups: “It’s just a Bush play to consolidate the Republican base,” some cynically declared.

  In the midst of passing this legislation, an unsigned memo was circulated to a number of Republican lawmakers describing the Schiavo affair as “a great political issue” for our party to exploit. I publicly condemned the content of the memo and reaffirmed that my interest in the case, and that of the many Democratic and Republican Senate members who supported action, was to assure that the woman be given every chance to live—not to score political points.

  Several aspects of this bill are worth noting. First, it was a unique bill passed under highly unusual circumstances, and it was not intended to, and should not, serve as a precedent for future legislation. Second, the bill did not impede any state’s existing laws regarding assisted suicide. Third, the bill recognized that an accurate diagnosis, using current behavioral testing with structural imaging and neurophysiological findings to measure accurately a patient’s level of consciousness, had not been performed in this case. Finally, in this bill, Congress acknowledged that we should take a closer look at the legal rights of incapacitated individuals in the future. Should we as a society always allow next-of-kin decisions to prevail when parents object?

  The level of cooperation and thoughtful consideration surrounding this legislative effort was remarkable. Harry Reid and I remained in contact during the process. A few senators, including my close friend John Warner and Michigan senator Carl Levin expressed reservations but allowed us to move forward without opposition nonetheless. A strongly bipartisan group of senators—Republicans Mel Martinez and Rick Santorum, and Democrats Tom Harkin and Kent Conrad—shepherded the legislation through the Senate quickly.

  But it was all for naught.

  In the federal courts, the Schindlers’ petitions and appeals were denied, and the U.S. Supreme Court declined to review the lower court’s decision. Terri Schiavo and her family members who loved her had run out of options. The feeding tube was removed, and the world sat back to wait as Terri Schiavo died after fourteen days of no water and no food.

  In June, Terri’s autopsy report came back showing that she had, as expected, extensive, anatomic brain damage. This added nothing new. We’d already known she had a severe brain injury (the diagnosis of persistent vegetative state is not an anatomic diagnosis but rather a clinical one). Almost gloating over the pathologist’s conclusions, some members of the media excoriated me following the release of Terri’s autopsy report, saying that I had tried to diagnose her condition based on the television videotape of Terri, as some put it “from the floor of the U.S. Senate.” That, of course, was totally false; I never made a diagnosis. I did want an accurate diagnosis confirmed. But the media was on a roll, fed aggressively by the partisan left, who saw an opening to challenge the credibility of the Senate majority leader of the opposite party. By undermining my credibility as a doctor, they thought they could destroy my credibility as Republican leader. And they threw arrows where it hurt—at my profession of medicine.

  Many friends, physician colleagues, and critics said that Congress’s involvement in the Schiavo case was a mistake. They thought that we should never have gotten involved, that I should never have stuck my neck out and worked with the House to bring this case to a resolution. Some went so far as to label it as the worst decision during my tenure as majority leader.

  In retrospect, it’s obvious that the Schiavo case was not a public relations victory for the Republican political cause or right-to-life values. Many Americans accepted the Democratic spin on the case—that the Republicans rushed for political reasons to interfere in a situation that should have remained purely a family matter. Our actions reflected the sometimes necessary conflict and tension between the rule of law (under which, in this case, the husband would have sole power over the woman’s life) and the considerations of ethics and morality. The press conferences and other acts of political “grandstanding” around the Schiavo matter were principally on the House side, where frankly I think things got way out of hand. (I held no press conferences on the matter.) Emotions on the issue ran high and probably overwhelmed reason at times. The Schiavo case was a lot more complicated and nuanced than most people realize.

  Still, I can’t bring myself to believe that, knowing what we knew at the time, the actions we took in the case were inappropriate. Politically it might have been wise to ignore the plight of the innocent woman and the cry for help from her parents and family. But what about that Hippocratic Oath to protect life and to do no harm? To this day, morally, I believe it was the right thing to do.

  THE MOST PAINFUL EPISODE DURING MY TIME SERVING IN THE Senate was one that was even more personal. It struck at my family, tore at my spirit, and even caused me for a time to lose faith in our legal system. Lasting for more than eighteen months, it cost me and my family personally more than we will ever admit. And it explains why many successful people today don’t even consider spending a part of their life serving in Washington, D.C.

  Hurricane Katrina hit on August 29, 2005. The levies were topped, and three days later I chartered a small twin-engine plane to New Orleans to offer my medical expertise in the chaotic, overwhelmed airport, then housing more than a thousand stranded individuals. Two weeks later, I returned to New Orleans for three days, this time with Franklin Graham and a
relief team from Samaritan’s Purse. And a week later I returned with a delegation of U.S. senators. Besides addressing the myriad problems raised by that natural disaster and the need for immediate relief funding, we were also monitoring the Senate Judiciary Committee hearing for the Supreme Court chief justice nominee, John Roberts. With all that going on, I wasn’t surprised when Amy Call, my tenacious and thorough communications director, came into my office wearing an expression of consternation on her face. But I was surprised when she explained the reason for her concern.

  “Senator, a writer for the Congressional Quarterly, was hanging around the office the other day, wanting to ask you some questions about a sale of some of your HCA stock. He missed you, so he approached me. He said that he had seen the financial disclosure information on file in the Senate Ethics Committee office.”

  I removed my glasses, leaned back in my chair a bit, and looked at Amy. A petite woman with an enormous passion for the truth and a keen ability to cut through fluff, Amy’s eyes drilled into mine as she continued.

  “I talked with him, and it seems he had some questions about why you would sell now, at this particular time, after putting up with all the critics’ complaints of supposed conflict of interest all these years.”

  “Yes, that’s right, Amy,” I said. “Back in April, I initiated actions so the trustees of my stock could sell any final amounts of HCA stock remaining in the blind trust accounts they manage for me. Years ago when we set the trust up, the trustees were instructed to diversify me out of HCA, and I want to make sure they get me all the way out as we look to the future. The Senate Ethics Committee automatically receives notice of the final sale. It’s all public information.”