A Heart to Serve

by Bill Frist

  The Medicare drug story illustrates how major reforms can be led by the congressional branch. It’s a lesson that the Obama administration is likely to follow, when it comes to health-care reform. While President Bush supported prescription drug coverage, the White House’s main contribution was its help pushing the bill to passage, not crafting the specifics of the legislation. The Bush administration had not made health care a major priority, and thus was comfortable having Congress lead. Moreover, the Bush team was well aware of the Clinton administration’s mistake in attempting to foist specific health legislation on an unwilling Congress.

  So how has the 2003 law fared? Better than anyone expected.

  Seniors have flocked to the new program. By 2009 over 26.7 million seniors had enrolled in the new drug plans, 59 percent of the Medicare population.

  And costs have each year come in much less than predicted (which explains the about-face of fiscal hawks and conservatives who today embrace the results of the program). Competition works. The marketplace works: Seniors are prudent shoppers and the financial incentives have resulted in a massive move toward generic drugs, away from the more expensive brand drugs. In 2007 the five-year cost of the prescription drug plan was revised downward by 26 percent from 2003 predictions! In 2009 the CBO announced an additional $86 billion reduction in projected Medicare outlays, due mainly to lower-than-expected prescription drug outlays.

  Lawmakers originally worried that some regions of the country would have trouble attracting at least two competing plans from which a senior could choose, but there are currently several dozen plans offered in each enrollment area. Choice is guaranteed for seniors.

  And the program is popular and well-liked. The percentage of seniors with a favorable view of the program has jumped from 17 percent at the beginning of 2004 to 42 percent in 2006 to 83 percent in 2009.

  The prescription drug law represented a huge political shift for the United States. The social safety net of health-care security for seniors was strengthened with the addition of drug coverage. Ironically, the most conservative government in recent times had pushed through the largest increase in entitlements, including generous subsidies for low-income beneficiaries, since Lyndon Johnson. Private plans for the first time became major players in an entitlement program. Political alliances were transformed with the historically Democratic-leaning AARP strongly supporting a Republican-led initiative and market-driven, private health-care interests backing expansions in Medicare. The law was transformative.

  In 1994, I left the practice of heart surgery, dreaming that I could play a role through public service in healing more than one patient at a time. I never envisioned, however, that I would be in a position to help pass a bill that over time will contribute to the health, hope, and healing of every American.

  13

  When Push Comes to Shove

  We all make mistakes in life. Some play out in private, and some play out in public. Many consider my biggest mistake as majority leader was to act on the case of an incapacitated woman in Florida, Terri Schiavo. Looking back, politically and publicly, it may have been advantageous to have never addressed the issue. But morally? Let me share the full story of what happened, and you can be the judge.

  The Terri Schiavo story was difficult and heartrending. As a physician who has focused on preserving life and who spent my medical career in transplantation, a field that requires the certification of brain death before doing a heart transplant, I suppose it was almost inevitable that I would become involved, especially because of its implications for future sanctity-of-life issues. And in addition to the oath every senator takes to protect the country and support the Constitution, I had also taken another professional oath, the Hippocratic Oath, promising to “do no harm” and to protect life.

  Moreover, I knew something about disability policy at the federal level. I had strongly advocated and legislated for the rights of those with physical and mental disabilities—yes, even severe disabilities like those of Terri Schiavo. In fact, in the mid-l990s I served as chairman of the Subcommittee on Disability Policy, that focused on the rights of individuals with disabilities.

  The saga involving Terri Schiavo’s parents, Bob and Mary Schindler, and Terri’s husband, Michael Schiavo, had been going on for nearly fifteen years before I first learned of the case. On February 25, 1990, Terri collapsed in the couple’s St. Petersburg, Florida, apartment. She was twenty-six years of age. According to reports, paramedics who responded to Michael’s 911 call found Terri lying facedown and unconscious, not breathing and with no pulse. The emergency workers attempted to resuscitate her and rushed her to the hospital. The period without oxygen caused severe brain damage. The cause of her collapse has never been determined, though at the time, she was considered to have suffered a cardiac arrest, possibly caused by a potassium imbalance or a lack of electrolytes in her blood.

  In the months before her collapse, Terri had been striving to keep her weight down by dieting and drinking megadoses of iced tea to cause fluid loss. Terri remained comatose for two and a half months. When she came out of this coma, she was fed through a tube inserted through her abdominal wall.

  Though severely brain damaged, Terri was breathing under her own power, she maintained a strong heartbeat, and her blood pressure was stable. Her vision was impaired, but she seemed to be able to follow objects with her eyes. When Terri’s condition did not improve after nearly a year, the doctors who treated her in St. Petersburg diagnosed her as being in a “persistent vegetative state” (PVS), indicating that it was highly unlikely that Terri would ever get better. Michael Schiavo filed and won a malpractice suit against one of Terri’s fertility doctors, for failing to diagnose bulimia in Terri. He sought $20 million to cover the cost of her future medical care. The jury awarded $1.4 million to be used for Terri’s future care, and $600,000 to Michael for the loss of Terri’s companionship.

  In November 1990, Michael took Terri to the University of California in San Francisco in hopes that an experimental procedure involving the implanting of a thalamic stimulator in her brain might help. It didn’t, and in January 1991, Michael admitted Terri to Mediplex Rehabilitation Center in Bradenton, Florida. In July, she was transferred to Sabal Palms Skilled Care Facility, a nursing home, where she received neurological testing and therapy.

  Early on, Michael and the Schindler family worked together, doing everything possible to help Terri. But after the financial award in mid-1993, when Terri contracted a urinary tract infection, her husband halted treatment and entered a “Do Not Resuscitate” order. Terri’s mother and father and the nursing home protested, and Michael rescinded the order. Apparently, by this time, he had lost hope of Terri’s ever recovering.

  In May 1998, Michael filed a petition to disconnect his wife’s feeding tube. In response, Terri’s parents again took legal steps to block such actions against their daughter. Terri had no living will indicating her desires should she become incapacitated, so the family remained embroiled in a legal battle for years over whether Terri would want to remain alive in her current condition. Michael claimed that she had made statements to the effect that she would not, saying, “If I ever have to be a burden to anybody, I don’t want to live like that.” Terri’s parents disputed those remarks, unheard by anyone else, on the basis that as a devout Roman Catholic, Terri believed in the Church’s position on sanctity of life and would not agree to euthanasia by refusing food and water. The Schindler family insisted that despite her difficulties, Terri demonstrated a strong will to live. Her parents and siblings all wanted her to live; her husband felt otherwise.

  A trial was held in January 2000 to determine Terri’s wishes, and Judge George Greer of Florida’s Sixth Circuit Court in Clearwater, Florida, ruled that there was “clear and convincing evidence” that Terri would not want to be kept alive by artificial means. Based on Greer’s ruling, Terri’s feeding tube was disconnected for three days in April 2001 before a series of legal appeals halted the intentional starv
ation and dehydration. Michael Schiavo had not divorced his wife; he eventually fathered the child of another woman while Terri remained in various care facilities. The Schindlers questioned Michael Schiavo’s motives for wanting Terri’s feeding tube removed.

  Following the 2000 trial, the Schindlers gathered opinions from thirty-three medical experts who signed affidavits contesting the diagnosis that Terri’s condition was beyond hope of recovery. A three-judge panel of the Second District Court of Appeals ordered that five doctors—two chosen by Michael Schiavo, two chosen by the Schindlers, and one chosen by Judge Greer—conduct tests on Terri.

  Exact determination of the diagnosis was critical—the difference between Terri’s life or death—since the law would allow food and water to be withheld if so directed by her husband if she was definitely in a persistent vegetative state, a specific syndrome that must be distinguished from coma and minimally conscious state. Under Florida law, Terri’s next of kin—her husband and not her mother and father—could make the decision to withhold food and water, so it was essential to be absolutely accurate on the diagnosis.

  Dr. Ronald Cranford was one of the two neurologists solicited by Michael Schiavo’s attorney, George Felos. A neurologist, bioethicist, and known proponent of euthanasia, Cranford was a familiar face at “right to die” trials across America. He sometimes referred to himself as “Dr. Humane Death.” Dr. Cranford was also a member of the board of directors of the “Choice in Dying Society,” which supported doctor-assisted suicide. In addition to Cranford, Michael Schiavo chose neurologist Dr. Melvin Greer. The Schindlers selected Dr. William Maxfield, a radiologist, and Dr. William Hammesfahr, a neurologist. The judge chose Dr. Peter Bambakidis, also a neurologist.

  As part of the court-ordered exam, Terri was videotaped for nearly six hours. The five doctors studied the tape and Terri’s medical records and examined Terri as well. Michael Schiavo’s two doctors concurred that Terri was in a persistent vegetative state, as did the doctor appointed by Judge Greer. But both Dr. Maxfield and Dr. Hammesfahr testified that Terri was not in persistent vegetative state, but rather was in a minimally conscious state. Maxfield testified that Terri had shown improvements in brain tissue and would benefit from treatments increasing blood flow and oxygen to the brain.

  Neurologist Dr. Hammesfahr testified that Terri showed cognitive function and could benefit by treatment. In an interview, the doctor later told CNN, “I spent about ten hours across about three months [examining Terri], and the woman is very aware of her surroundings. She’s very aware. She’s alert. She’s not in a coma. She’s not in PVS.” Dr. Hammesfahr went on to say, “With proper therapy, she will have a tremendous improvement. I think, personally, that she’ll be able to walk, eventually, and she will be able to use at least one of her arms.”

  Video of Dr. Hammesfahr’s examination of Terri was shown to the court during the evidentiary hearing. In the court-ordered video, Terri seemed to interact with her mother. Reacting with smiles, she seemed to follow commands to open and shut her eyes and lift her limbs. At several points, she turned her head toward the person speaking.

  Dr. Cranford and Michael Schiavo’s attorney described Terri’s movements as nothing more than “involuntary reflexes.”

  Appearing on the Oprah Winfrey Show by satellite, Terri’s sister, Suzanne Vitadamo, said, “When you go in and say ‘hi’ to Terri, Terri will in a sense do her best to say ‘hi’ to you. Or there’s a lot of times where if you tell Terri you’re going to leave, she’ll cry. She doesn’t want you to leave. So her reactions are very purposeful.” In the same broadcast, Mary Schindler described Terri’s actions for Oprah and her audience, “She cries, she laughs, and she follows me around the room. She laughs at her dad’s jokes. Each day is different.” Terri’s brother and sister, her mother and father—all her immediate blood relatives—loved her and did not want her life terminated.

  Sarah Green Mele, a speech-language pathologist at the highly regarded Rehabilitative Institute of Chicago, studied Terri’s medical records, audiotapes of Terri and her dad, and the videotape presented at the evidentiary hearing. In a nine-page sworn statement Mele declared that Terri Schiavo was definitely not in a persistent vegetative state.

  Despite the conflicting testimony, in November 2002 Judge George Greer reaffirmed his original decision and ordered that Terri’s feeding tube be removed on January 3. Court appeals delayed the action until October 15, 2003, when for the second time the feeding tube was removed. For six days Terri Schiavo hung on even as she was denied food and water, but a groundswell of support arose in Florida, prompting the Florida legislature to pass what was called “Terri’s Law,” empowering Governor Jeb Bush to intercede and order Terri’s feeding tube be reinserted.

  In a public statement, Governor Bush said, “I understand the limitations cited by the judges who have declined to hear the later stages of this case. However, any life-or-death decision should be made only after careful consideration of all related facts and conditions.”

  Michael’s lawyers immediately appealed the ruling, calling it unconstitutional on the basis of the separation of powers, charging that Governor Bush had overreached his executive powers. The American Civil Liberties Union joined the fracas as co-counsel on the side of Michael Schiavo. Terri’s Law was subsequently declared unconstitutional by Circuit Court Judge Douglas Baird. Upon appeal, the Florida Supreme Court struck down the law by a 7–0 decision, opening the door for the third time so that Terri could be legally and intentionally starved to death.

  The case continued to draw national attention, with Michael and his attorney appearing on Larry King Live, and members of the Schindler family taking their case public on Fox News Channel’s Hannity & Colmes. Meanwhile, Judge Greer continued to reject scores of motions brought by the Schindler family, including tests to see whether Terri could swallow food and water and more modern functional radiological studies.

  Because of the lingering doubts and questions regarding personal agendas and conflicts of interest swirling around the case, calls to save Terri’s life came from a wide variety of people—from the Vatican after Pope John Paul II stated that health-care providers are morally bound to provide food and water to patients, including those in persistent vegetative state, to Focus on the Family founder Dr. James Dobson, wheelchair-bound Christian author, artist, and singer Joni Eareckson Tada, actor Mel Gibson, and thousands of others. Many Americans could not understand why the young woman could be forced to die when both her parents, her brother, and her sister all clearly wanted her to live and were willing to take care of her. She was not brain-dead or on mechanical artificial life support; how could our legal system allow one individual—her husband—to terminate her life when her parents and siblings objected?

  A California businessman offered Michael $1 million to leave Terri in the care of her family and walk away. Schiavo rejected the offer, stating that he had received other similar offers—for even more money. Talk show host Glenn Beck set up a pledge fund with over $6 million in hopes that Schiavo would back away from the decision to remove Terri’s feeding tube.

  Knowing my strong support of sanctity-of-life issues and my familiarity in dealing almost daily with the issues of brain death in the transplant field, constituents and colleagues alike repeatedly asked me about the various ethical and medical issues involved in the Schiavo case. But it was an interfamily issue, to be decided most appropriately locally—or so I first thought. But does government have the right to terminate life when a family objects?

  The questions intensified when Judge Greer continued to deny the Schindler family’s motions to nourish Terri orally, rather than through the tube. Instead Greer ordered Terri’s feeding tube to be removed at 1:00 P.M. on Friday, March 18, 2005.

  When I first heard about the situation facing Terri, I was curious to know more details from a medical standpoint. From my transplant work, I was well aware that for the diagnosis of persistent vegetative state the spouse can ultimately decide the fate
of the patient. So the critical issue from a legal standpoint is to make absolutely certain the diagnosis is solid. Simply watching the continuous stream of news stories and reading the deluge of conflicting media reports raised the question in my mind, Is she definitely in a persistent vegetative state? It can be a difficult diagnosis to make, and according to a 1996 British medical journal article, even experts are wrong nearly half the time.

  As a transplant surgeon whose work centers on the definition of death of the donor, I had spent many years studying and working through the various issues surrounding brain death, defined in a 1968 landmark article in the Journal of the American Medical Association. I knew the standardized clinical exams for the differing stages of incapacitation: coma, minimally conscious state, persistent vegetative state, and brain death. Making the diagnosis was often a tough call, and one that should never be made cavalierly. In addition, I knew from the medical literature that in the early weeks after injury (which Terri was not) there may be a progressively improving continuum from coma to persistent vegetative state and then to minimally conscious state.

  I was surprised that a judge had made the decision to remove the feeding tube from a woman who everyone agreed did not meet the criteria for brain death—a decision that would essentially lead to death by starvation—when her family objected. As a transplant surgeon, I would never remove the heart from an individual—even to give life to another—when both parents and all immediate blood relatives objected. Yes, the law says I could do so with consent of the spouse, but I wouldn’t. Although the parallel is not perfect, it’s close enough. How could I support active termination of a young woman’s life when her parents objected? The answer: I couldn’t.