From the Publisher

Based on court records, personal interviews, and a firsthand vantage point, Unplugged chronicles the extraordinary medical advances that allow us to live longer, healthier lives, but can also make it confoundedly difficult to die. Colby discusses current laws and proposed legislation that affect our ability to make end-of-life decisions and provides insights into decisions we may face about elderly family members, including resuscitation, feeding tubes, and dementia. A portrait of the overwhelming pain that often engulfs families confronting end-of-life decisions, his book also offers tips for writing living wills and an overview of hospice care.

Lancet

William Colby…has written a timely, comprehensive book exploring the legal, medical and ethical questions surrounding this complex issue…In a surprisingly personal narrative voice.

JAMA

Given our continuing denial of death in the United States and the pervasiveness of the illusion of medical immortality… Unplugged is a necessary book….Unplugged is clearly written, engrossing, and understandable by all, yet at the same time well researched and replete with scholarly references—no mean feat….Unplugged is warmly recommended.

Publishers Weekly

In 2005, the Terri Schiavo case galvanized millions to think about end-of-life decision making and question when life ends and how to define a good death. Colby, the lawyer for Nancy Cruzan, whose 1988 case was one of the first to raise such questions, writes elegantly about these issues. He reminds us that the right to die is a new subject because the technology that allows us to keep patients alive is recent. Cardiac defibrillators, as he points out, were first used to resuscitate patients in 1959. The term "persistent vegetative state" was defined only in 1972, as a result of the Cruzan case. Colby discusses briefly the major issues in three high-profile right-to-die cases-Cruzan, Schiavo and the first, that of Karen Ann Quinlan in 1976-to highlight the difficult medical and legal questions surrounding the end of life, including the advantages and disadvantages of a living will, appointing a legal guardian and "do not resuscitate" orders. He takes no ethical position regarding the removal of feeding tubes or respirators but urges us to talk to our families about our wishes in this regard. Although many other books have covered these topics, few possess Colby's engaging style and judicious insights. (June) Copyright 2006 Reed Business Information.

Library Journal

Many books have been written about right-to-die issues, but this one stands out for its reasoned, accessible approach. The lawyer for the landmark right-to-die case of Nancy Cruzan, Colby (Long Goodbye: The Deaths of Nancy Cruzan) describes medical and legal concerns carefully and without bias; he discusses the Karen Ann Quinlan, Cruzan, and Terri Schiavo cases, using the issues raised by these tragedies to help readers think about what they would want done should they ever face similar decisions. Colby covers living wills, the healthcare power of attorney, feeding tubes, the rights of the disabled, hospice, and euthanasia. He also addresses the concept of institutional glide-i.e., when processes become standardized and move through the system by default if a health advocate doesn't feel empowered to step in and examine the decisions more carefully. New issues arise constantly because of the rapid advance of medical technology, and serious discussions need to continue at both the individual and the societal levels. Essential reading for anyone who wants to leave loved ones with the ability to make informed right-to-die decisions, this book is very highly recommended for all libraries.-Tina Neville, Univ. of South Florida at St. Petersburg Lib. Copyright 2006 Reed Business Information.

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Table of Contents

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Unplugged

AMACOM Books

Chapter One

THE LAW GROWS out of the needs of society. Our environment grew polluted from factories and cars, so Congress studied the issue and passed the Clean Air Act of 1970 and the Clean Water Act of 1972 to address the problem. As society has grown more complicated and dependent on technology, the laws needed to govern that society have expanded. Like the rapid developments in the medical technology, the complexity and sheer volume of new laws has increased exponentially in the last thirty years.

The laws that govern death and dying provide a perfect case study of this exponential growth. These laws also help illustrate how the law is intertwined with the technology that it seeks to regulate; the law does not exist in a vacuum. The case of Terri Schiavo is the most recent and most public example, but advances in medical technology have required the law to come up with many answers. The best way to understand the law, as with medicine, is to examine it in its historical context.

DEFINING DEATH AND THE LAW

For most of human history, when we were dead, we were dead. Our hearts, lungs, and brains all stopped at roughly the same time. There wasn't a need to define death, in the law or otherwise; it just was.

Then in 1967, the world heardabout Dr. Christiaan Barnard in South Africa transplanting a human heart. Closer to home, Dr. Thomas Starzl in Colorado performed the first successful liver transplant that same year from one human to another. In Boston, doctors had also started work in the new world of surgical transplants. These transplant doctors and their anesthesiologists wanted guidance on a profound question: At what moment could they remove organs from a patient whose heart was still beating?

In response to that question, Dr. Henry Beecher wrote a letter to the dean of the Harvard Medical School, suggesting the need for a committee. Patients in need of new organs were dying, and other patients with no hope of recovery had such organs. Medicine and society needed to create new criteria for death. The Harvard Brain Death Committee formed, and this group gathered around a conference table in Cambridge, Massachusetts to discuss another extraordinary question: Was man's understanding of the meaning of death, essentially unchanged through all of recorded time to that point in 1968, now obsolete?

The committee published their conclusions in an article in the Journal of the American Medical Association (JAMA) that year titled "Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. A Definition of Irreversible Coma." The report explained the purpose of the Ad Hoc Committee:

Our primary purpose is to define irreversible coma as a new criterion for death. There are two reasons why there is need for a definition: (1) Improvements in resuscitative and supportive measures have led to increased efforts to save those who are desperately injured. Sometimes these efforts have only partial success so that the result is an individual whose heart continues to beat but whose brain is irreversibly damaged. The burden is great on patients who suffer permanent loss of intellect, on their families, on the hospitals, and those in need of hospital beds already occupied by those comatose patients. (2) Obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.

Dr. Henry Beecher understood the inexact nature of their mission. "At whatever level we choose to call death, it is an arbitrary decision. Death of the heart? The hair still grows. Death of the brain? The heart may still beat. The need is to choose an irreversible state where the brain no longer functions. It is best to choose a level where, although the brain is dead, usefulness of other organs is still present. This we have tried to make clear in what we have called the new definition of death." Dr. Beecher also understood that their inquiry went well beyond the medical and scientific: "Can society afford to discard the tissues and organs of the hopelessly unconscious patient when he could be used to restore the otherwise hopelessly ill, but still salvageable individual?" he asked.

Of course, change and progress-in law or medicine or any field- are not delivered seamlessly to all states and cities at one time. In fact, it's quite the opposite. The JAMA article about the Harvard committee helped launch the discussion in society. But not all doctors, or all laypeople, understood the issues in the detail presented in the report-and the conclusions in the report were certainly not written into the law in any states yet. Transplants simply began to happen in hospitals with no laws in place, just as there had been no law telling Dr. Lown that he could shock the chest of a patient to try to restore a heartbeat in 1959. Transplant doctors, like Dr. Lown, simply practiced medicine that made good sense and took some reasonable experimental risks in otherwise hopeless situations.

In 1970, Kansas became the first state whose legislature passed a law defining death to include brain death. A physician-legislator proposed the law, and it passed without much discussion. In 1972, law professor Alexander Capron (now director of ethics at the World Health Organization in Geneva, Switzerland) and Dr. Leon Kass (appointed by President Bush in 2001 to chair the President's Council on Bioethics), wrote a law review article that proposed a model statute that was shorter and less confusing than the new Kansas law. Over the next ten years, many states debated these issues in their state legislatures and passed a variety of laws defining death.

Courts were involved, too, shaping the common law in places where statutes did not exist. The common law is judge-made law that grows as judges resolve disputes in society and write opinions explaining what law or rule they applied to resolve a particular dispute. In Virginia, a man suffered head injuries in a workplace accident and was taken to the hospital, unconscious. Doctors attempted surgery on the head injuries without success. They concluded the man was brain dead, turned off his respirator, and then removed his heart and kidneys for transplantation. His brother later sued the doctors for damages under Virginia's wrongful death act. (Wrongful death laws basically allow survivors of a person killed either intentionally or due to negligence to sue the wrongdoer for money.)

The doctors initially filed a motion asking the judge to dismiss the case. He refused. In the opinion denying the motion to dismiss, the judge wrote that the "definition" of death was the "all vital bodily functions" test found in the few other common law cases that existed. Since the injured worker's heart was still beating when the doctors turned off the respirator, his brother might have a claim against the doctor for wrongful death.

The case went to a trial and ultimately to a jury. The testimony during the trial apparently altered the judge's understanding of the definition of death. He gave the jurors this rather lengthy instruction to apply in reaching their verdict:

You shall determine the time of death in this case by using the following definition of the nature of death. Death is a cessation of life. It is the ceasing to exist. Under the law, death is not continuing, but occurs at a precise time, and that time must be established according to the facts of each specific case. In the facts and circumstances of this case, you may consider the following elements, none of which should necessarily be considered controlling, although you may feel under the evidence, that one or more of these conditions are controlling: the time of the total stoppage of the circulation of the blood; the time of the total cessation of the other vital functions consequent thereto, such as respiration and pulsation; the time of the complete and irreversible loss of all function of the brain; and, whether or not the aforesaid functions were spontaneous or were being maintained artificially or mechanically.

A fairly weighty question for a jury of laypeople in 1972. Not so easy today, either. The jury ruled in favor of the doctors. More common law was created.

This ten-year mishmash of laws is what led the previously mentioned President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, established by an act of Congress in 1978, to tackle first the task of defining death. Ultimately, the commission decided to write a completely separate report on that question alone, which it delivered to Congress on July 9, 1981.

From that first meeting of the Harvard brain death committee in 1968 to the 1981 report of the President's Commission to the public dying of Terri Schiavo in 2005, American society has learned something of brain death. In many ways, though, any full understanding of this concept is in its infancy. Over and over on the nightly news, both local and national, commentators called Terri Schiavo brain dead. Even a publication with editorial control as rigorous as The Wall Street Journal made this mistake. Of course she was not, because if a person is brain dead, she's dead. By law. Unless she's in New Jersey or New York.

As recently as 1993, the legislature in New Jersey struggled with the question of defining brain death differently for groups in society whose religious beliefs vary. Under New Jersey law today, a doctor can have two human beings in exactly the same medical condition, lying on beds next to one another in an emergency room-and one patient is dead, the other alive if the second patient meets the religious exception to brain death under state law. When does the soul leave the body? When do we enter Heaven? Do we? The law has no great wisdom for answering these mysteries of death.

It's not just the law, though. We don't even have the words in our dictionaries to describe this technological no man's land. Consider Phillip Rader. In the fall of 1988, the Missouri Supreme Court had actually scheduled two arguments dealing with death for the same morning: the first was the case of Nancy Cruzan, which would take control of my own professional life for the next three years, and the second was the case of Phillip Rader.

On the Tuesday before Thanksgiving in 1987, 17-year-old Phillip Rader entered a south Kansas City hospital for the third and final corrective surgery to repair a cleft palate. The family expected that the hospital would discharge him that weekend, and that he would be back in school the following week, driving his brown, mint-condition 1979 Trans Am, his face already healing, the final vestiges of his cleft palate gone.

Phillip's surgery went well according to the doctors, but his recovery was difficult. Pain and nausea kept him awake much of the night Tuesday. At some point in the early morning hours Wednesday, he stopped breathing. A respiratory technician found him and called a "Code Blue" over the hospital intercom. Doctors rushed in and Phillip was resuscitated. The length of time he went without oxygen, however, was unknown. His electroencephalogram (EEG) taken immediately after the incident was abnormal but showed signs of some electrical life in the brain. Five hours later, his heart stopped again, and this time the EEG after the event found no electrical activity, described in Phillip's medical chart as electrocerebral silence.

That day the doctors told Phillip's family the horrific news, that Phillip was brain dead. They discussed organ donation and an autopsy. "They were very emphatic that he was dead and there was no hope for recovery," John Rader, Phillip's father, said. The problem was that Phillip was still breathing, and his heart still beating, albeit with the assistance of a respirator, feeding tube, medicine, and monitors. His parents believed their son was alive and refused permission to withdraw the machines. "We look at him and we still see Phillip," Mr. Rader said. "There might be something that they've overlooked."

The hospital complied, and with aggressive nursing care and careful monitoring, Phillip's body persisted. By June, more than six months later and still with no resolution, the frustrated medical team had had enough. They brought the issue to court. Kansas City judge Tom Clark held an emergency bench trial (no jury, only a judge). Seven doctors, including two brought in by the parents, told the judge that Phillip met the Missouri statutory definition of brain death, passed by the state six years earlier in 1982.

His mother still did not believe it. She testified that Phillip's blood pressure elevated 95 percent of the time when she entered the room. His face flushed. "I know he knows we are there," she told Judge Clark. Phillip's father testified, "It is a matter of time before he will awake and rise. We believe that Phillip can hear us. Parents, they can perceive these things where medical authority can't."

On July 7, 1988, Judge Clark issued a reluctant opinion, which began with the words, "With sadness and regret." He ruled in favor of the hospital, concluding it could turn off the respirator, and he gave the family ten days to appeal. Within days, the Missouri Supreme Court had set the morning of September 29 to hear arguments in Cruzan and Rader, one after the other. The irony the court would face in the two cases on September 29 was amazing. Phillip Rader's doctors said he was dead, but his mother told the judge, "I know he knows we are there," and she asked the judge to leave the respirator and feeding tube in place. Nancy Cruzan's doctors (and state officials) said she was alive, but her father told the judge, "My daughter died the night of the accident," and he asked the judge to remove her feeding tube.

As the argument date approached, the Rader case took some strange twists. By August 3, 1988, the day the court announced it would hear arguments in Cruzan and Rader on the same morning, Phillip Rader had been brain dead for over eight months, and still his heart pumped on. The Kansas City Times reported that the longest previous case of someone being sustained after brain death was four and a half months. One doctor told me that parts of the young man's body had actually started to decompose even though his heart somehow continued. No one knew how much longer he could go.

On August 5, Phillip Rader turned eighteen (unless he was already dead as the hospital contended). That event added an interesting legal question. Under Missouri law, Phillip was by definition emancipated on that date, and his parents no longer spoke on his behalf. Did the parents now need to seek a guardianship in probate court to continue speaking for him? Did the parents have rights as parents any longer, or were they now limited to the narrow powers of the guardianship laws? Had Phillip's accident somehow "frozen him in time" for purposes of decision-making by his parents? We actually made exactly this argument to the Missouri Supreme Court two years later in the Busalacchi case.

Things grew stranger. On August 16, Mr. Rader came into Phillip's fourth floor hospital room and found that Phillip's life-support systems had been sabotaged; the feeding tube was in a trash can, and bruises were evident around Phillip's neck where someone apparently tried to jerk out his breathing tube. Police were called, and they discovered that a mentally-disturbed patient from another floor had ventured into Phillip's room. The police detective told Phillip's mother that the police could do nothing about the woman, though, because under Missouri law Phillip was already considered dead. Doctors reinserted the feeding tube.

Two weeks later, on August 31, Phillip's heart stopped again. This time efforts to revive the heart failed. That left Nancy Cruzan and her family and me, their lawyer, on our own to tell the Missouri Supreme Court about the elusive line between life and death, to try to explain a world where a newspaper could run a headline on the day Phillip's heart stopped: "Brain-Dead Youth Dies." (The role of the Cruzan case in this societal evolution is discussed in the next chapter.)

THE BIRTH OF THE LIVING WILL

Luis Kutner began practicing law in Chicago in 1930. By the 1960s he was one of the best-known human rights lawyers in the country. He co-founded Amnesty International in 1961, and founded the World Habeas Corpus project to fight unwarranted imprisonment around the world. Kutner was also a member of a group called the Euthanasia Society of America. A prolific writer, Kutner in 1969 published an article in the Indiana Law Journal, which proposed a new document that he named "the living will."

(Continues...)

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Excerpted from Unplugged by William H. Colby Copyright © 2006 by William H. Colby. Excerpted by permission.
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