Unplugged: Reclaiming Our Right to Die in America

Overview

Medical technology has helped mankind conquer tuberculosis, polio, and countless other once certain-death diseases. It has given us hope against cancer and AIDS, allowed heart and brain surgeries that have saved untold numbers of lives, and delivered us from the pain and crippling legacy of injury. Medical technology, it seems, is a never-ending string of miracles.

But it is also a double-edged sword. More often than not, death today happens because of a decision to stop doing ...

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Overview

Medical technology has helped mankind conquer tuberculosis, polio, and countless other once certain-death diseases. It has given us hope against cancer and AIDS, allowed heart and brain surgeries that have saved untold numbers of lives, and delivered us from the pain and crippling legacy of injury. Medical technology, it seems, is a never-ending string of miracles.

But it is also a double-edged sword. More often than not, death today happens because of a decision to stop doing something, or to not do it at all. As the tragic life and death of Terri Schiavo so poignantly illustrated, universal definitions of life, death, nature, and many other concepts are elusive at best. Unplugged addresses the fundamental questions of the right-to-die debate, and discusses how the medical advances that bring so much hope and healing have also helped to create today’s dilemma.

This compelling book explores recent high-profile cases, including that of Mrs. Schiavo, and illuminates the complex legal, ethical, medical, and deeply personal issues of a debate that ultimately affects us all. Compassionate and beautifully written, the book helps readers understand the implications of current laws and proposed legislation, various medical options (including hospice), and the typical end-of-life decisions we all must face in order to make informed decisions for ourselves and our loved ones.

The hardcover edition of Unplugged was chosen by The Library Journal as one of the Best Consumer Health Books of 2006.

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Editorial Reviews

From the Publisher

“[Colby] conveys a sensitivity and compassion about a subject that many find extremely difficult to discuss….a fascinating and well-written book.”

-Health Progress, November 2007

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Product Details

  • ISBN-13: 9780814401606
  • Publisher: AMACOM
  • Publication date: 12/12/2007
  • Pages: 288
  • Sales rank: 528,834
  • Product dimensions: 6.00 (w) x 8.90 (h) x 0.70 (d)

Meet the Author

William Colby (Kansas City, MO) is the lawyer who represented the family of Nancy Cruzan in the first right-to-die case heard by the U.S. Supreme Court. He has appeared on Larry King Live, Hardball, Frontline, Today, CBS This Morning, and many national news network programs. He is a Senior Fellow with the National Hospice and Palliative Care Organization in Washington, D.C. , and the author of Long Goodbye: The Deaths of Nancy Cruzan.

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Read an Excerpt

C H AP T E R 5

The Law and the Right to Die

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 heard about 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.1 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.2 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.’’3 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) Im-

provements 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.’’5 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.6

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.7 A physician-legislator pro-

posed the law, and it passed without much discussion.8 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.9 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.10

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, 1981.11

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.12 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 excep-

tion to brain death under state law.13 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.’’14 (The role of the Cruzan

case in this societal evolution is discussed in the next chapter.)

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Table of Contents

CONTENTS

FOREWORD vii

ACKNOWLEDGMENTS ix

INTRODUCTION xi

PART ONE

1

Terri Schiavo's Private Years 3

2

Terri Schiavo's Public Years 21

3

The Autopsy of Terri Schiavo 47

PART TWO

4

The Ascent of Medical Technology 57

5

The Law and the Right to Die 73

6

The Case of Nancy Cruzan 87

7

How We Die in America Today 95

8

Dying on the "Institutional Glide Path" 109

9

In Terri Schiavo's Shoes 125

10

My "Living Will" 141

11

Feeding Tubes—The Hardest Question 149

12

But I Believe in the Right to Life! 165

13

Special Concerns of the Disabled Community 175

14

Oregon v. Ashcroft/Gonzales and Physician-Assisted Suicide 185

15

Hospice: The Hidden Jewel 201

16

Where Do We Go from Here? 217

APPENDIX 221

NOTES 227

BIBLIOGRAPHY AND

ADDITIONAL READING 249

RESOURCES 253

INDEX 259

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  • Anonymous

    Posted August 6, 2006

    Offers a broader perspective on the topic

    The right-to-die debate is once again tackled this time by a lawyer who represented Nancy Cruzan in the first right- to-die case heard by the Supreme Court. While Nancy Cruzan's struggles were chronicled in a prior book by Colby, Unplugged: Reclaiming Our Right To Die In America offers a broader perspective on the topic, moving beyond Cruzan's struggle to offer answers to legal, ethical, medical and personal issues involved in the debate. Court records, interviews and the authors' own experiences lend to the discussion of current laws, proposed changes, and their effects on society.

    Was this review helpful? Yes  No   Report this review
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