Fighting for Dear Life Read online

  I came into this case with the belief that it can be ethically permissible to discontinue artificially provided nutrition and hydration for persons in a persistent vegetative state. Having now reviewed the relevant facts, having met and observed Ms. Schiavo in person, and having reflected deeply on the moral and ethical issues, I would like to explain why I have changed my mind in regard to this particular case. . . .

  Terri Schiavo demonstrates behaviors in a variety of cognitive domains that call into question the previous neurological diagnosis of a persistent vegetative state. Specifically, she has demonstrated behaviors that are context-specific, sustained, and indicative of cerebral cortical processing that, upon careful neurological 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.

  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.

  Keep in mind, this observation was the only one permitted (due to a court order) in the last year of Terri’s life. In that sense it is critically important and underscores the dubious rationale for putting Terri to death due to PVS, coupled with hearsay evidence that prior to her collapse she had made general comments when watching TV programs about people on life-support machines that she ‘‘would not want to live like that.’’

  Notice Dr. Cheshire’s observation, similar to mine and others’, that Terri’s face brightens in the company of other people. Patients in a PVS condition do not respond to such stimuli.

  Some members of the press, however, have been critical of Dr. Cheshire’s report. They argue that Dr. Cheshire failed to conduct a full neurological examination of Terri, and therefore, they dismiss his review as being invalid. It’s true. Dr. Cheshire ‘‘observed’’ rather than ‘‘examined’’ Terri. Why? He was forbidden to do so by the court and by the guardian, Michael Schiavo.1 It’s worth pointing out that Dr. Cheshire’s observations were strikingly similar to what Dr. David Young noted in his affidavit. Dr. Young also personally observed Terri in 1998 when Michael first asked the court to have Terri’s feeding tube removed. He writes:

  I was there to determine several things, including if she could track moving objects, could she respond to verbal or physical stimuli, how did she respond, did she drool, and did she have any facial expressions. My findings were that she was not drooling, so she was handling secretions. . . . She did follow especially her mother across the room and focus on her.

  The behaviors I observed from Terri Schiavo are not consistent with someone in PVS. . . . She can be taught to swallow and if she was worked with she could handle oral feedings, which is what I testified in court.

  Let me summarize for you what several of the other doctors told me. Remember, these are not fringe doctors with outlandish theories. Many have been highly recognized in the field of neurology or have authored textbooks, while a number of these professionals have practiced at the finest hospitals and clinics around the world for more than thirty years.

  THE ALL - STARS

  In baseball terms, an all-star team of medical professionals volunteered to go to bat for Terri in early 2005, had Judge Greer welcomed their services. Take Dr. Ricardo G. Senno, who specializes in brain injury medicine. For years he served as the medical director of the Rehabilitation Institute of Chicago’s Brain Injury Medicine and Rehabilitation Program. He ‘‘strongly’’ recommended a fresh round of testing for Terri using the latest technology.

  Dr. Senno wrote, ‘‘Based on what I have seen, I believe that she is at least in a Minimally Conscious State; she does not appear to be in a persistent vegetative state.’’ In his affidavit, Dr. Senno states,

  I have developed rehabilitation programs for patients just like Terri Schiavo. Because of continued advances in medical testing and treatment, even within the past several years, I believe, from a medical point of view, Ms. Schiavo deserves another evaluation, even if she was examined just a year ago. . . . Just because Ms. Terri Schiavo couldn’t physically or mentally do something a year ago, doesn’t mean she can’t do it today, or tomorrow.

  Leaving all ethical, moral, and legal aspects aside, I believe it is a medical crime not to evaluate this person.

  Consider Dr. Rodney Dunaway, a board certified neurologist who trained at Walter Reed hospital during the Vietnam War. In his capacity Dr. Dunaway saw ‘‘literally hundreds of brain-injured young men.’’ He served as consultant in neurology to the NASA flight surgeon during a number of Apollo missions. In his professional opinion:

  The diagnostic studies upon which the decision to terminate her life have been based . . . were inadequate, and insufficient to allow a reasoned opinion by her physicians. In my opinion, further neurological studies are needed before a declaration of persistent vegetative state can be made.

  Time and again, many of the doctors we heard from believed Terri was at worst in a minimally conscious state (MCS). Unlike those who are in PVS, patients who are in MCS have a much greater possibility of improving with therapy. What’s more, modern advances in medical technology are such that brain function—not just brain anatomy—can be tested by using a brain SPECT, or imaging technology. So says Dr. J. Michael Uszler, an attending staff physician in nuclear medicine at the UCLA Medical Center. Dr. Uszler confirms my earlier point that the study of the human brain is constantly being refined.

  Many physicians felt there was sufficient doubt over the diagnosis of PVS to warrant reevaluation. The American Association of Physicians and Surgeons, representing more than four thousand physicians, requested Terri be reevaluated. All appeals to the court, however, were denied.

  The diagnosis of PVS had been made three years earlier in 2002. Much had changed since then. In particular, the minimally conscious state was just being recognized as a diagnostic entity. Before 2002, the minimally conscious state had never been formally defined. In addition, the full range of behavioral elements seen in the minimally conscious state was still being characterized. In the wake of these advances, Dr. James P. Kelly offered to reevaluate Terri so that her diagnosis would be based on up-to-date medical knowledge. Dr. Kelly is a highly acclaimed member in the neurology community. He is a diplomat in neurology in the American Board of Psychiatry and Neurology, a fellow of the American Academy of Neurology, on the board of governors for the International Brain Injury Association, and one of the authors of the seminal paper that defined the minimally conscious state. Despite his credentials, authority in the area, and expertise in rendering diagnoses concerning states of consciousness, his offer, as well as those from many other reputable neurologists, was flatly rejected.

  How could the court refuse that offer?

  Why didn’t the media report this?

  We also heard from speech pathologists who said Terri could be taught to swallow and speak using new techniques and advances in treatment. Dr. Jill Joyce, as both a psychotherapist and a speech/language pathologist, spent more than twenty years working with the severely brain-damaged. As with the other doctors who were not permitted by Michael to personally examine Terri, she studied the videotapes and related articles about Terri’s condition. She wrote:

  It is my opinion that Ms. Schiavo would be able to learn how to swallow if given the proper therapy. I have personally treated stroke patients, and other patients with severe brain damage similar to Ms. Schiavo’s that have regained their ability to swallow after being given the proper therapy . . . It is my opinion that Ms. Schiavo . . . would improve with aggressive swallowing therapy.


  When these declarations from medical professionals of this caliber were put before Judge Greer, we asked the court for a reassessment of Terri’s condition. The answer was always the same: No. All we were trying to do was to have the court allow Terri to be reevaluated in 2005 using the advances in medicine that had been made since 2000 and 2002. But we were rebuffed at every turn. I couldn’t understand why there was such a rush to kill Terri.

  I still don’t.

  Even though these compelling statements under oath by the aforementioned doctors and therapists—as well as many others we received—were ignored, I, for one, have had my confidence in the medical profession restored. This is, after all, a litigation-crazy world. The willingness of these doctors to volunteer their time, resources, and expertise for free, and to take the side of Terri against a husband who had already sued and won a medical malpractice suit, was nothing short of a real inspiration for those of us trying to save Terri.

  Why did they do it?

  They believe life is sacred.

  They believe life is worth preserving.

  ENDING LIFE IS NOW

  A LEGITIMATE MEDICAL PURPOSE?

  When Florida legislators passed a law in the late 1990s that permitted Michael Schiavo to go to court and ask a judge to discontinue his wife’s food and water, thereby causing her death, a line was crossed that had never been crossed before in America. This legislation declared that use of a ‘‘feeding tube’’ was a form of ‘‘medical treatment,’’ which any person who is terminal or in a persistent vegetative state has a ‘‘right’’ to refuse.

  But the law went even further in Florida.

  If the person who is terminal or in PVS never had a living will or an advanced care directive, and can no longer speak for themselves, the guardian or other family members may go to court and convince a judge that death is what this patient would have wanted. The evidence used to support that claim is evidence that is generally not admissible in court because it is hearsay— no one can prove with absolute certainty what the patient’s actual wishes would have been without a clear written directive.

  Many were shocked that causing the death of a disabled person who cannot speak for herself had become so easy in Florida. But the slippery slope toward a death culture in America has become covered with a slick layer of ice ever since Terri's death.

  Case in point.

  In January 2006, the United States Supreme Court, in Gonzales v. Oregon, upheld a 1994 Oregon Death With Dignity Act that will potentially permit doctors all across America to dispense or prescribe a lethal dose of drugs upon the request of a terminally ill patient. While Oregon is currently the only state to have such a law (as of this writing), barring a federal law to the contrary, this new Supreme Court decision opens the door for other states to follow.

  The main difference between the two pieces of legislation is that, in Florida, death is passive— the patient dies ‘‘naturally’’ over time, as any healthy person would do without food and water. In Oregon, on the other hand, death is actively induced instantaneously by the administration of a lethal dose of drugs.

  Is this really what we want in America?

  How soon will ‘‘permitting’’ patients to decline food and water or allowing them to ask for a lethal dose of drugs become an expectation placed upon them? The distance between those two positions is razor thin. Terri’s case showed all America that judges are now free to order a patient’s death at the request of a guardian or family member, even when the patient has no written directive requesting that end of life.

  Many hospitals already permit doctors to refuse to treat patients, no matter what their expressed wishes are, if the doctor thinks treatment will be ‘‘futile.’’ It’s now legal for any state to enact these pro-death laws and cause the deaths of the elderly and disabled either passively (like Terri) or actively (in doctor-assisted ‘‘suicide’’ ).

  Please let that sink in for a moment. We’ve crossed a line — a very dangerous one.

  Terri’s case and Oregon’s assisted suicide law have now set a dangerous precedent for all vulnerable Americans, especially those who are disabled, those who have terminal illnesses, those who can no longer speak for themselves, and perhaps one day even those who are indigent and unable to pay for costly health care. I believe these patients may become increasingly pressured to make the choice to die and ‘‘get out of the way’’ no matter what their true wishes might be.

  The Hippocratic Oath once required doctors to ‘‘cause no harm.’’ Returning to the centerpiece of that oath is an important first step in keeping physicians in the healing business— to be ministers of life rather than enforcers of death under the veiled guise of ‘‘dignity.

  ’’

  CHAPTER SEVEN

  IN SICKNESS

  AND IN HEALTH

  Michael claims he loves Terri and he has said it on numerous occasions, but he treats her in a way I don’t think most of us would treat our own pets.

  —BOBBY SCHINDLER, TERRI SCHIAVO’S BROTHER1

  This might come as a surprise, but I was deeply troubled after my initial visit with Terri on Christmas Eve, 2004. You’d think I should have been encouraged by her healthy appearance, by her fully animated behavior, and by the glowing interaction Terri shared with her parents. No question about it, she’d surpassed any expectation I had of her vitality. I came away from her presence renewed in my resolve to fight for her life.

  Still, as I headed for a Christmas Eve dinner with my family that evening, I felt agitated. I couldn’t stop thinking about the numerous injustices surrounding Terri’s case—from Terri’s initial medical malpractice award in 1992 to the sheer unfairness that Terri was not permitted home for her favorite holiday. The lack of basic human kindness toward this disabled woman by her husband and the court gnawed at my spirit and trampled on my sense of fairness.

  Come to think of it, one of my law professors at Duke University had cautioned me about getting too passionately involved in cases. Once, in my oral advocacy class, we were assigned to present arguments in a mock trial. When I was finished making my case, the professor said, ‘‘David, you’re acting like this really matters. If tomorrow you had to go to court and argue for the other side, as a lawyer you should be able to do that.’’

  He must have seen the look of surprise on my face. He continued, ‘‘Trust me, you need to disconnect yourself from the process. You cannot care—it’s not your problem. You’ll have a heart attack or an ulcer or a mental breakdown. Without a professional distance, the practice of law will destroy you.’’ I’m sure he thought he was giving me sound advice. I respected his opinion, and in practical terms it’s pretty good advice.

  However, I’ve never been able to do that. I cannot distance myself from what I believe. To me, when I go to court, I have to believe I’m on the side of truth. I could never stand before God—or even look myself in the mirror—and say, ‘‘Sure, I fought for Terri, but it was just a job. I could just as easily have represented the other side.’’

  These were several of the unsettling issues that grieved me as I left the hospice on Christmas Eve—concerns I still haven’t fully come to terms with.

  I SWEAR TO TELL THE TRUTH

  Two years after his wife’s disability occurred, Michael Schiavo sued Terri’s general practitioner and gynecologist for malpractice, claiming they had failed to realize that Terri was bulimic (though her autopsy did not reveal signs of bulimia). At the time of the trial, Michael told the jury and Terri’s family that he was committed to taking care of his wife for the rest of his life. Through what was at times an emotionally charged testimony, Michael made his intentions clear:

  1. He was committed to getting Terri treatment.

  2. He was committed to keeping her alive.

  3. He was committed to doing everything he could to help improve the quality of her life.

  On November 5, 1992, Michael Schiavo took the witness stand. Under oath and under direct examination by his own lawyer, M
ichael fought back tears as he affirmed his desire to care for his wife, Terri:

  QUESTION: Why did you want to learn to be a nurse?

  SCHIAVO: Because I enjoy it and I want to learn more how to take care of Terri.

  QUESTION: You’re a young man. Your life is ahead of you. When you look up the road, what do you see for yourself?

  SCHIAVO: I see myself hopefully finishing school and taking care of my wife.

  QUESTION: Where do you want to take care of your wife?

  SCHIAVO: I want to bring her home.

  QUESTION: If you had the resources available to you, if you had the equipment and the people, would you do that?

  SCHIAVO: Yes, I would, in a heartbeat.

  As you might expect, Bob and Mary Schindler were elated to know that their son-in-law was committed to caring for their daughter. They were especially heartened that Terri might finally have enough money to receive the professional rehabilitation and speech therapy she so badly needed. Naturally, the prospect of receiving funds to cover the mounting medical bills was a great relief too. No longer would the Schindlers have to initiate fund-raisers, hold bake sales, and scrape together money for Terri’s treatment.

  Originally, Michael sought $20 million in malpractice damages for Terri’s future medical care and therapy. This figure was based on the prediction that Terri’s life expectancy was another 51.27 years—a projection made by expert witnesses called by Michael’s legal team. Part of the money requested was also for his loss of companionship.

  Although Michael had already begun to move on in his personal life, during the malpractice trial his attorney asked specifically about Michael’s relationship with Terri: