The Withdrawal of Life-Sustaining Treatment

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The Withdrawal of Life-Sustaining Treatment

Persistent Vegetative State

Surrogate Decision-Makers

Karen Ann Quinlan

Artificial Feeding

Nancy Cruzan

Continued Debate

Terri Schiavo

The Government Steps In

Learning from Terri Schiavo

Need for Legislation

People who are terminally ill can consciously decide whether to continue or stop treatment. They are also able to choose whether to live out their remaining days with hospice care or to enlist the assistance of a physician to hasten their death. Likewise, members of certain religious communities are able to make conscious decisions about accepting or refusing potentially life-saving medical treatment. For some individuals, however, making such decisions for themselves is impossible.

The problem derives from the fact that in this modern age of medicine, patients can be kept alive, even though they are no longer conscious or have any chance of recovery. Life-prolonging treatment covers a span of many different options, including medication such as antibiotics, blood transfusions, respirators, artificial nutrition and hydration, and dialysis. With these kinds of treatments available, patients can be kept alive for an almost indefinite period of time. In these situations, the question then becomes whether keeping a patient with no hope of recovery alive is more detrimental to the person than not keeping them alive. Writer George Burnell asks the pertinent question: “Are we prolonging the dying or prolonging the living?”95

While opposing the use of assisted suicide, many major religions and other groups have agreed that withdrawing life-sustaining treatment for those who have no hope of recovery is an acceptable option. And yet, many others argue that even patients who are at death’s door should not have that life shortened by the withdrawal of treatment. They argue that life is sacred at every stage and should be prolonged until a natural death occurs.

Many doctors, as a result of this conflict, worry that they may be charged with malpractice or even wrongful killing if they stop potentially life-sustaining treatment. Physicians are so concerned about the possibility that they will be charged with murder that they often continue treatment, sometimes in defiance of the patient’s and family’s wishes.

Persistent Vegetative State

The controversy over withdrawing medical treatment came about because of a new medical condition. This new diagnosis was necessary because of the improvement in medical technology. Before the 1970s, when a patient experienced a cardiac arrest or cessation of heart function, they were simply declared dead. With the invention of cardiopulmonary resuscitation

(CPR), oftentimes patients who experienced a cardiac arrest were revived and placed on life-sustaining machines such as artificial respirators. In many cases, however, the patients had been without oxygen for an extended period of time, and their brains had suffered massive damage. What looked like a coma persisted for many months with no signs of improvement and was named a persistent vegetative state.

The term “persistent vegetative state” came into use for the first time in 1972. A coma or sleep-like state is usually limited in its duration, while a vegetative state is unlimited and usually persists until the death of the patient occurs. Patients in a vegetative state appear to be awake at times but are totally unaware of their surroundings. Their eyes may move around the room, and they might smile or make noises, but these actions are purely reflex and not indicative of any level of consciousness. Writers Paul W. Armstrong and B.D. Cohen elaborate: “They cannot, and will not ever again, be able to see, hear, speak, respond, think, or feel on even the most rudimentary level.”96

Fighting for the Defenseless

“We must work diligently to not only help Terri Schiavo continue her own fight for life, but to join the fight of all those who have lost the capacity to fight on their own.” —Representative James Sensenbrenner, commenting on government intervention.

quoted in neal conan, “analysis: terri schiavo case and end-of-life decisions,” npr, talk of the nation, march 21, 2005.

Problems immediately arose in these patients, who had such massive brain damage that there was no hope of recovery. In many cases, the patients were young and had suffered the injuries after an automobile accident or other catastrophic event. Families were torn apart with the need to make decisions about stopping treatment of their loved ones. The decisions were made more difficult by the age of many of the patients and the lack of any guidelines or laws that dealt with such situations. In addition, most young patients lack advance directives such as a living will or medical power of attorney. These documents clearly outline what treatment a person wants and does not want.

Surrogate Decision-Makers

In the absence of any advance directives, physicians are faced with the dilemma of approaching a family member about treatment. Some states have enacted laws that clearly define the order of preference in a family having to make decisions for a comatose patient. New York Times journalist Shaila Dwan elaborated in

Advance Directives

Many medical experts believe that the use of advance directives could potentially end the conflict surrounding the withdrawal of life-sustaining treatment. In 1969 human rights lawyer Luis Kutner proposed a new document to help patients retain control over those decisions: a living will. California was the first state to adopt his suggestion, but other states soon followed. In addition to the living will, many states also authorize the use of a durable power of attorney for health care. Together, the two documents are called advance directives.

A living will is a document that specifies the circumstances under which a person might not want continued medical care. A durable power of attorney names a surrogate, usually a family member, to make such decisions when a person is no longer able to do so. These documents are recognized in most states but are underused. Less than 25 percent of Americans, for instance, have made out a living will.

Editor James Haley has provided a sample of the California Advance Health Care Directive: “I do not want efforts made to prolong my life and I do not want lifesustaining treatment to be provided or continue: (1) if I am in an irreversible coma or persistent vegetative state; or (2) if I am terminally ill and the application of lifesustaining procedures would serve only to artificially delay the moment of my death.”

Despite the benefits of these documents, they still have many drawbacks. Unfortunately, many hospitals and physicians ignore them or do not know about them. In addition, the living will tends to be limited in scope and practice; it cannot predict or dictate treatment in every possible condition.

Quoted in James Haley, ed., Opposing Viewpoints: Death and Dying. Farmington Hills, MI: Greenhaven, 2003, p. 60.

October 2003: “Overwhelmingly, state laws and courts have granted the spouse the first right to make life-or-death decisions. … This reflects the view that spouses are better equipped to make proxy decisions because they share responsibilities and have known each other intimately in their adult lives, rather than in childhood.”97

Eventually, the court system came up with an answer in the form of surrogate decision-makers and the concept of substituted judgment. Colby explains: “Using this concept, a substitute

decision-maker exercises the right of the incapacitated person by trying to determine what the person would want.”98 In some cases, the court actually assumes this role.

A surrogate decision-maker has many legal obligations. He or she is required to follow a patient’s advance directives and, in the absence of such documents, must use what the court refers to as substituted judgment. Medical journalists Paul S. Mueller and C. Christopher Hook explain this concept: “Knowing the worldview, values, goals, and fears of the patient and making decisions as closely as possible to those the patient would make if capable.”99

The 1983 President’s Commission for the Study of Ethical Problems in Medicine further addressed this issue and concluded: “When making decisions about medical treatment for a seriously ill loved one, the decision-maker must take into account such factors as the relief of suffering, the preservation or restoration of functioning, and the quality as well as the extent of life sustained.”100

Doctors, however, are often in dispute with such surrogate decision-makers. Writer Burnell explains, “More often than not, doctors feel compelled to continue treatment once they have started it . . . even if it is futile in improving the patient’s condition.”101 In addition, physicians are bound by their medical oaths to act as their patients’ advocates. If, for instance, they believe that the surrogate is not acting in the best interests of the patient, they can challenge any decision that might work to their patients’ disadvantage. Many physicians and hospital administrators have used this principle and have asked the court to appoint an alternative decision-maker.

Many moral and ethical issues arose in the care of patients in a persistent vegetative state. Three major cases over a thirty-year period have helped shape public opinion about patients in a persistent vegetative state. And yet, to date, the issue of withdrawing life-sustaining treatment remains unsolved as each state wrestles with its own definitions and policies.

Karen Ann Quinlan

The first case that gained public recognition was that of Karen Ann Quinlan, a twenty-one-year-old woman. On the night of

April 15, 1975, she went to a local tavern in Landing, New Jersey, with friends. While there, she had several alcoholic beverages and then began to act oddly. Unknown to all concerned, Quinlan had also taken sedatives, or barbiturates, prior to her evening on the town. Her friends took her home and put her in bed, but when they checked on her hours later, she was not breathing. One of her friends started mouth-to-mouth resuscitation and called for an ambulance. Quinlan eventually started breathing on her own again but never regained consciousness. When she arrived at the emergency room, her pupils did not react to light, nor did she respond to pain. Both were physical signs of massive brain damage caused by the lack of oxygen. She was placed on an artificial respirator to help her breathe, and her parents were notified. She was eventually diagnosed as being in a persistent vegetative state.

After consulting with their priest, attorney, and other family members, the Quinlans asked the physicians to remove the artificial respirator and allow their daughter to die naturally. The hospital administrator advised Quinlan’s physicians not to comply with the parents’ wishes. The Quinlans then took the case to court, where a judge ordered the removal of the respirator. Still, the hospital refused to take action. Julia Quinlan, Karen’s mother, explained the family’s feelings: “We didn’t ask for Karen to die. We just asked for her to be removed from technology and be placed in a natural state.”102

Her physicians, however, were afraid that if they removed her respirator, they would be guilty of murder. In addition, Ralph Porzoi, the hospital’s attorney, argued: “If Karen Ann Quinlan has one chance in a thousand, if she has one chance in ten thousand, if she has one chance in a million, who are we and by what right do we kill that chance? Who are we and by what right do we kill that life?”103

Withdrawing Treatment in Infants

The withholding of treatment for infants with disabilities and other problems has long been a controversial issue. As smaller and smaller premature infants began to survive, the issue intensified. The death of one baby in the 1980s brought nationwide attention to the problem.

Baby Doe was born in April 1982 in Bloomington, Indiana, with Down syndrome and esophageal atresia. The infant’s esophagus was not connected to his stomach, meaning the child could not swallow or absorb food. Doctors recommended surgery and a temporary feeding tube to repair the problem. The parents refused, in part because of the Down syndrome, but also because surgeons offered less than a 50 percent chance of improvement. The parents also refused a permanent feeding tube and intravenous therapy. Hospital officials immediately went to court, demanding treatment for the infant. County prosecutors filed an emergency petition asking the court to take custody of the child. Before the issue could be resolved in the courts, Baby Doe died. Criticism of the parents began almost immediately. Pointing out that the baby was not comatose, a Washington Post editorial weighed in: “The Indiana baby died not because he couldn’t sustain life without a million dollars worth of medical machinery but because no one fed him.” Proponents of the right to life considered the incident an infanticide—the murder of an innocent newborn.

This case and others compelled then president Ronald Reagan to take action to prevent similar situations. On October 9, 1984, Reagan signed the Child Abuse Amendments of 1984, making it illegal for doctors to withhold nourishment or other medically indicated treatments unless an infant was comatose. The act specified that treatment was indicated unless “(1) the infant was irreversibly comatose; (2) if treatment would merely prolong dying; or (3) if the treatment would be virtually futile in terms of the survival of the infant and the treatment itself under such circumstances would be inhumane.”

Quoted in Peter G. Filene, In the Arms of Others: A Cultural History of the Right to Die in America. Chicago: Ivan R. Dee, 1998, p. 108.

Quoted in Meiling Rein, Abbey M. Begun, and Jacquelyn F. Quiram, Death and Dying: Who Decides? Wylie, TX: Information Plus, 1998, p. 56.

A court battle ensued that finally reached the New Jersey Supreme Court. On March 31, 1976, the court handed down a decision in Re Quinlan, finding that Quinlan’s right to privacy should include her right to be removed from the respirator. Chief Justice Richard Hughes spoke for the court: “We have no hesitancy in deciding . . . that no external compelling interest of the state could compel Karen to endure the unendurable . . . with no realistic possibility of returning to any semblance of cognitive . . . life.”104 The court further ruled that Quinlan’s parents could use their best judgment in removing the respirator. The respirator was finally removed, but Quinlan did not die. She would linger another ten years before finally succumbing on June 11, 1985.

Do Not Harm

“To demand that we impose unwanted treatments on a patient for whom there is no prospect of improvement, who has left verbal information expressing his or her life and health care values and goals but did not take the time to or could not complete an advance directive, is unconscionable and violates the oldest of ethical principles—nonmaleficence or do not harm.” —Paul S. Mueller and C. Christopher Hook.

paul s. mueller and c. christopher hook, “the terri schiavo saga: the making of a tragedy and lessons learned,” mayo clinic proceedings, november 1, 2005.

In the wake of the Quinlan case, several notable things occurred. The U.S. Congress passed a law in 1978 that established a presidential commission to study ethical problems in medicine and biomedical research. Even more importantly, many hospitals throughout the United States formed ethics committees. These committees were charged with arbitrating issues between patients and their families and their doctors.

Artificial Feeding

Quinlan’s lingering death after the respirator was removed brought up another highly controversial and emotional issue—the use of artificial feeding methods to sustain life. Modern medicine

has developed a method of surgically inserting a feeding tube directly into the stomach, which can be used long-term in feeding and hydrating patients. Armstrong and Cohen explain why this is important: “Further complicating the issue, is the fact that many persistent vegetative state patients survive for long periods of time without mechanical ventilation. Thus the question with these patients is whether the continuation of artificial nutrition and hydration is medically indicated.”105 Many pro-life supporters base their support on the presumption that even patients who would not want extraordinary life-sustaining measures would want basic hydration and nutrition.

The issue of hydration is thus fraught with emotional and psychological importance. Author Burnell explains: “Most people perceive food and water as a basic sign of nurturance and a minimum commitment to the well-being of another person.”106 This emotionalism revolves around the issue of the starving patient. Many right-to-life groups have focused on the belief that withdrawing nutrition and hydration will cause a painful and horrible death. St. Louis neurologist William Burke states: “A conscious person . . . will go into seizures. Their skin cracks, their tongues crack, their lips crack. … Death by dehydration takes ten to fourteen days. It is an extremely agonizing death.”107 Many other physicians argue that this is simply not true, claiming that as the muscle and tissue break down, the patient is generally too weak to feel thirst or hunger. They claim that, generally, such deaths are peaceful and quiet, with the patient slipping into an unconscious state and feeling no discomfort as death approaches.

Nancy Cruzan

The hydration and artificial nutrition of a patient was challenged in the 1980s by the parents of Nancy Cruzan, a twenty-six-year-old woman who was involved in an automobile accident in 1983.

Thrown from the car, Cruzan was found by paramedics lying face down in a water-filled ditch. Finding no heartbeat and no respirations, the medics began cardiopulmonary resuscitation and removed her to the nearest hospital. Emergency room physicians found her comatose but breathing on her own and admitted her to the hospital. After lingering in a coma for many months, her physicians diagnosed Cruzan as a persistent vegetative state patient with no possibility of recovery or improvement.

Quality of Life

“Engaging in life is the key to my assessment of my own quality of life. … If all medicine can do is sustain me in a vegetative state . . . without hope of living life again, then I believe the medicine or technology should be stopped, and earlier rather than later.” —Lawyer William H. Colby, attorney for Nancy Cruzan’s family.

william h. colby, unplugged: reclaiming our right to die in america. new york: amacom, 2006, p. 130.

In the meantime, doctors had inserted a feeding tube to provide nutrition and hydration. Cruzan’s parents, after long deliberation, eventually asked the doctors to remove the feeding tube and allow their daughter to die naturally. The hospital refused to comply with their request, leading to a number of court cases as the Cruzans fought for their daughter’s right to die.

The case drew nationwide attention. For the first time, television viewers saw a patient in a persistent vegetative state and were kept informed about her parent’s struggle. Public opinion polls in 1990 showed overwhelming support for the Cruzans: 88 percent of Missourians and 90 percent of Missouri physicians agreed that it was right to remove the tube.

After long deliberation and many court appearances, the Cruzan case was finally heard by the U.S. Supreme Court in Cruzan v. Missouri. The Court ruled for the state of Missouri, saying that the state had not violated the Constitution in denying the removal of the feeding tube. Chief Justice William Rehn-quist, on July 25, 1990, however, did leave the door open for a new trial should any new evidence of Cruzan’s actual wishes come to light. Three of her friends ultimately came forward and testified about several conversations they had had with Cruzan, during which she had indicated her desire for no life support. With this new evidence in hand, the Cruzans appealed the decision. This time, the Missouri attorney general chose not to oppose the family. The feeding tube was removed, and Nancy Cruzan eventually died a natural death in December 1990.

Political Versus Private Matters

“Do we really want to set the precedent of this great body, the United States Congress, to insert ourselves in the middle of families’ private matters all across America?” —Representative Debbie Wasserman Schultz, commenting on government intervention.

quoted in neal conan, “analysis: terri schiavo case and end-of-life decisions,” npr, talk of the nation, march 21, 2005.

Author Cox summarizes: “Nancy’s death intensified the intensive and bitter national debate between those who believe that people should be allowed to die with dignity and others who have argued that even life in a vegetative state has a meaning.”108 There was no easy answer, and it would be left to later courts to make their own determinations.

Continued Debate

Despite the various court rulings, the problems surrounding the removal of a feeding tube arose again in New Jersey when the parents of Nancy Ellen Jobes filed for the right to remove their daughter’s artificial nutrition. The issue was nearly identical to that of Cruzan. Authors Armstrong and Cohen explain: “Physicians and health care facility administrators were refusing to allow the withdrawal of life-supporting technology from a patient for whom the treatment offered no hope of improvement —to say nothing of recovery.”109 Ultimately, the court ruled in Jobes’s favor, enabling the family to have the feeding tube removed.

Despite this decree, other cases also went to court to settle the same basic questions: When can life-sustaining treatment be withdrawn? Do the patient and the family have the right to make these decisions? In Clearwater, Florida, for example, eighty-five-year-old Estelle Browning clearly specified in her living will that she did not wish to be kept alive by means of an artificial feeding tube. Despite her wishes, she died with a feeding tube after a stroke rendered her unable to voice her wishes.

Another case in Florida had a different ending. Abe Perlmut-ter was a seventy-three-year-old man with Lou Gehrig’s disease, a debilitating disease during which the patient loses all muscle control, including swallowing and breathing. He requested that his physicians remove his respirator. Unwilling to comply with his wishes, the hospital took the case to court, where an appellate court ruled that the patient’s wishes superseded those of the state. The court stated:

Abe Perlmutter should be allowed to make his choice to die with dignity. … It is all very convenient to insist on continuing Mr. P’s life so that there can be no question of foul play. … However, it is quite another matter to do so at the patient’s sole expense and against his competent will. … Such a course of conduct invades the patient’s constitutional right of privacy, removes his freedom of choice, and invades his right to self-determine.110

Terri Schiavo

As the debate continued over withdrawing life-sustaining treatment, another heart-wrenching case gained worldwide attention. Once again, the nation watched as a family fought in the courts to settle the end-of-life decision to withdraw tube feeding.

Terri Schiavo was twenty-seven years old in 1990 when she suffered a cardiac arrest at home. While paramedics were able to restart her heart, Schiavo never regained consciousness, although she did open her eyes. Eventually she was diagnosed with persistent vegetative disorder, given no hope of recovery, and discharged from the hospital to a variety of nursing homes and rehabilitation centers. Her husband, Michael, was immediately appointed Terri’s legal guardian. Terri Schiavo’s situation reached crisis stage in 1993.

The crisis resulted from a strong difference of opinion about Terri’s care between her husband and her parents, Mary and Bob Schindler. After consultations with various specialists, Michael sued the hospital to have Terri’s feeding tube removed. He had been told by Terri’s neurologist that his wife had, in fact, died in the first hours after her collapse and that there was absolutely no hope for recovery.

The Schindlers vehemently opposed this decision and fought to keep their daughter alive. They believed that their daughter was responding to them, smiling at them, following them around the room with her eyes, and trying to talk. They hired attorney David Gibbs to represent them in court. He met Terri in the hospital and described his experience: “I found Terri sitting in a recliner. … Absolutely nothing was hooked up to her [except the feeding tube]. No IV drip. No monitors. No ventilators. … It was clear that Terri understood who the different people were in the room. … At the sound of her mother’s voice, Terri squealed with delight. … She was clearly animated and responsive, and very much alive.”111

On May 11, 1998, Michael Schiavo filed a petition in probate court seeking authorization to remove all artificial life support, namely the feeding tube. Judge George Greer ruled on January 24, 2000, that the tube feedings could be stopped. The feedings stopped in April 2001 but, following a successful suit by the Schindlers, were restarted shortly thereafter. Other trials followed, and again Greer ruled on ceasing the life support, reordering the tube removed in October 2003.

The Government Steps In

In the meantime, however, the Schindlers had contacted Randall Terry, a strong right-to-life advocate. Right-to-life groups throughout the United States supported the Schindlers in their opposition to the feeding tube removal. The National Right to Life Organization stated: “Terri is not terminally ill. … To induce someone’s death by denying him or her nutrition and hydration is an act of starvation.”112 Terry and other right-to-life supporters contended that not all persistent vegetative states were permanent, and they cited numerous examples of patients who had fully recovered after being in such a state for long periods of time.

Terry appealed on the Schindler’s behalf to Governor Jeb Bush and the Florida legislature. On October 21, 2003, Terri’s Law was passed, allowing the governor fifteen days to order the feeding tube reinserted in any patient without a living will. Schia-vo’s tube was consequently reinserted. David Gibbs, attorney for the Schindlers, later explained the law: “Our bill would have protected the disabled from having a feeding tube removed when there was a family disagreement regarding the disabled person’s spoken end-of-life wishes.”113

It was at this point that the Schiavo case reached the front page on newspapers around the world. The media began treating the Schiavo situation as a death watch, keeping viewers informed on a day-to-day basis of the latest news and the latest court case. Pictures of a debilitated yet smiling Terri covered the front pages of newspapers and appeared nightly on television.

Terri’s Law was ultimately overturned and ruled unconstitutional on the grounds that the law was not in keeping with the separation of powers and that the executive and legislative branches of the Florida government could not overrule a decision of the judicial branch. The feeding tube was removed, per Judge Greer’s order, on March 18, 2005. This decision, however, did not stop the Schindlers or federal legislators who were determined to protect what they perceived as Terri’s right to life. Congressional leaders in both the Senate and the House of Representatives introduced bills to protect an incapacitated person’s rights, namely a Bill for the Relief of the Parents of Theresa Marie Schiavo. After passage by both houses of Congress, President George W. Bush rushed to Washington from his vacation to sign the bill into law, calling for the reinsertion of the tube.

Following the passage of this law, the Schindlers filed an appeal with the U.S. District Court in Florida for the reinsertion of the tube. Judge James D. Whittemore issued a thirteen-page decision denying the Schindler’s request. In his ruling, Whittemore wrote: “This court concludes that Theresa Schiavo’s life and liberty interests were adequately protected by the extensive process provided in the state courts.”114 Furthermore, Whittemore ruled that the federal government lacked the jurisdiction to overturn a Florida court decision. Governor Bush, still not satisfied with the rulings, then ordered the Department of Children and Families to take custody of Terri so that the tube could be reinserted. Greer issued a restraining order to prevent this, which Bush observed, and Terri Schiavo died on March 31, 2005, ending the family’s twelve-year struggle.

An autopsy showed, beyond a doubt, that Schiavo’s brain was profoundly damaged. Florida’s District Six medical examiner, Jon Thogmartin, reported, “The degree of brain damage Terri had sustained was severe and irreversible, and there was no hope of rehabilitation.”115 He also concluded that Terri was blind, thereby refuting the claims of the Schindlers that their daughter could see their movements.

Learning from Terri Schiavo

By the time Terri died, she had had her feeding tube removed and reinserted several times. In addition, there had been fourteen

Right to Life—Terri Schiavo

During the long battle between Michael Schiavo and the Schindlers, various groups made their feelings about the matter well known. Members of the right-to-life movement vehemently opposed the withdrawal of life-sustaining treatment for Schiavo. They spoke of the miracles that had occurred with such patients and specifically mentioned Carol Dusold, a young homecoming queen, who had been rendered comatose after a 1966 automobile accident. She spent four months in what physicians referred to as a persistent vegetative state. Her extremities drew up and contracted, and her weight dropped to 65 pounds, indicating a severely debilitated state with little hope of recovery. Physicians recommended the removal of life support, but Dusold’s mother refused. Sometime later, Dusold revived and began a period of extensive rehabilitation. She eventually married and had a child, living with only a limp and slightly slurred speech.

The Schindler’s attorney, David Gibbs, recounts another such story. In 1996 twenty-one-year-old Theresa de Vera lost consciousness and stopped breathing during a severe asthma attack. She ultimately settled into a deep coma that physicians diagnosed as a persistent vegetative state. Doctors told the family there was no hope of recovery, and yet four months later, she woke up. After rehabilitation, she relearned how to feed herself, speak, and use her upper body. She later graduated from college.

Right-to-life supporters cite many similar stories of people in lengthy comas regaining consciousness and, after rehabilitation, resuming a normal lifestyle. Some of those who have recovered contend that they were aware of everything going on around them, even conversations between family members and physicians.

different court appeals and numerous other motions and hearings in the Florida courts. In addition, five suits had been filed in Federal District Court, while the Supreme Court of the United States had ruled on four different occasions not to hear the case. In the end these cases settled nothing other than that Terri would be allowed to die.

Nor did Terri’s death end the controversy surrounding the removal of life-sustaining treatment. The most critical voice came from the Schindler’s attorney, David Gibbs, who stated, “Terri’s case . . . 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.”116

Many others believe that the Florida legislature, Governor Bush, the U.S. Congress, and President Bush had no business meddling in a private family matter. The majority of these critics believe that the case should never have gone to court in the first place. They stress that the removal of the feeding tube did not clash with the ethical guidelines of any medical or religious group. In fact, they argue, Florida law supported Michael Schia-vo’s right to have the tube removed, since he was her legal guardian.

Editors of the Orange County (CA) Register wrote: “The Schiavo case has underscored the nation’s deep distaste for what many regard as overbearing government intrusion, various polls show. 83% of respondents to a CBS News poll . . . said Congress and the president should stay out of such matters.”117

What Would Terri Want?

“I know that Terri doesn’t want to be like this. Almost every time I saw Terri, I’d think how she’d hate being this way, how she’d never want to be this helpless, this dependent.” —Michael Schiavo, Terri Schiavo’s husband.

michael schiavo with michael hirsh, terri: the truth. new york: dutton, 2006, p. 88.

Registered nurse Michele Mathes summarizes: “The case of Terri Schiavo was the most litigated medical case in history. It was the focus of legislatures and courts at both the state and federal level. Indeed, it spawned its own private law by Congress.” Mathes then offers her opinion:

For all that, though, can we say that Terri Schiavo was well served by the law? By the time she died, tens of thousands of words had been written about her life and death by attorneys, judges, journalists, advocates, pundits, health care professionals, ethicists, and ordinary folks. Most of it focused on determining . . . what Terri would have wanted in terms of end-of-life care. I believe it is safe to say that whatever Terri’s choices would have been . . . she would not have wanted what actually happened.118

Need for Legislation

The tragedy that surrounded Terri Schiavo highlighted the need for legislation and guidelines that physicians, hospitals, and courts can use to ease the complicated nature of these kinds of cases. Legislatures are inconsistent and do not have clear rules on the issue. Instead most have a collection of court decisions and opinions, none of which provide a consistent standard for dealing with a patient in a persistent vegetative state.

Writers Armstrong and Cohen give their opinion:

Beginning with the New Jersey Supreme Court in the Quinlan case, court after court, commission after commission, and even some legislators, have affirmed and reaffirmed the right of an incompetent patient—particularly those in a persistent vegetative state—through family members and guardians, to refuse life-sustaining medical treatment. Why then has it been necessary for [others] . . . to go through the same public hell endured . . . by the Quinlan family?119

“A Decision to End a Life”

“Make no mistake: Terri Schiavo was not terminally ill or near death. This case was not an end-of-life decision. This was a decision to end a life.” —David Gibbs, attorney for Terri Schiavo’s parents.

david gibbs with bob demoss, fighting for dear life. minneapolis, mn: bethany house, 2006, p. 30.

Many of the questions surrounding the right-to-die issue remain unanswered. Assisted suicide, for instance, while legal in the state of Oregon, remains against the law elsewhere. Proponents of legalizing assisted suicide continue to petition legislatures for the passage of laws that would allow the terminally ill to end their own lives. At the same time, family members of those on life-support systems and those in a persistent vegetative state continue to struggle to deal with the difficult decisions of ending life-sustaining measures.

With medical costs rising annually, the cost of end-of-life care continues to rise, placing a burden on families, insurance companies, and the tax-paying public, who are helping offset medical costs. As the population continues to age, the issue of end-of-life care continues to be a concern. In the meantime, the controversy surrounding right-to-die issues continues unabated.