If That Ever Happens to Me

Making Life and Death Decisions after Terri Schiavo

Lois Shepherd

• Publisher: The University of North Carolina Press
• Year: 2009
• ISBN:
  9780807888643
• Topic: Medicine
• Subtopic: Ethics in Medicine

Every day, thousands of people quietly face decisions as agonizing as those made famous in the Terri Schiavo case. Throughout that controversy, all kinds of people--politicians, religious leaders, legal and medical experts--made emphatic statements about the facts and offered even more certain opinions about what should be done. To many, courts were either ordering Terri's death by starvation or vindicating her constitutional rights. Both sides called for simple answers. If That Ever Happens to Me details why these simple answers were not right for Terri Schiavo and why they are not right for end-of-life decisions today. Lois Shepherd looks behind labels like "starvation, " "care, " or "medical treatment" to consider what care and feeding really mean, when feeding tubes might be removed, and why disability groups, the faithful, and even the dying themselves often suggest end-of-life solutions that they might later regret. For example, Shepherd cautions against living wills as a pat answer. She provides evidence that demanding letter-perfect documents can actually weaken, rather than bolster, patient choice. The actions taken and decisions made during Terri Schiavo's final years will continue to have repercussions for thousands of others--those nearing death, their families, health-care professionals, attorneys, lawmakers, clergy, media, researchers, and ethicists. If That Ever Happens to Me is an excellent choice for anyone interested in end-of-life law, policy, and ethics--particularly readers seeking a deeper understanding of the issues raised by Terri Schiavo's case.

1

DISORDERS OF CONSCIOUSNESS AND THE PERMANENT VEGETATIVE STATE

Theresa Marie Schiavo was twenty-six years old when she suffered a cardiac arrest for reasons still unknown. Terri grew up in the suburbs of Philadelphia, Pennsylvania, the oldest of three children. She married her first boyfriend, Michael Schiavo, whom she met in college, and they moved to Florida in 1986. Her family followed them there. Terri worked as a clerk for an insurance company while Michael worked in restaurant management. One early morning in February 1990, Michael awoke, found Terri collapsed in the hallway of their apartment, and called 911. Twelve minutes later, at 5:52, paramedics begin resuscitation efforts and, after several attempts at defibrillation, restored her heartbeat. By this time, her brain had sustained severe injury due to lack of oxygen. She was taken to a local hospital. She never again regained consciousness.

Defining the Permanent Vegetative State

Initially, Terri entered a coma. During this time, she would have looked like she was asleep. A coma resembles sleep because the patient’s eyes are closed, but the patient is unresponsive and cannot be roused. A coma is typically a temporary condition; patients who initially enter a coma will either die without ever recovering consciousness, will recover either complete or partial consciousness, or will enter a vegetative state. This, after about a month, was how Terri’s coma ended—in a vegetative state.

Drs. Bryan Jennett and Fred Plum adopted the term “persistent vegetative state” in 1972 to describe patients who had, after trauma to the brain, entered a condition of unconsciousness that is marked by periods of apparent wakefulness,¹ where a cycle of “eyes-open, ‘wakeful’ appearance alternates with an eyes-closed ‘sleep’ state.”² As recently described by Drs. Nicholas Schiff and Joseph Fins, “In all other respects, the vegetative state is similar to coma. Patients in vegetative states demonstrate no evidence of awareness of self or response to their surroundings.”³

The term has been widely used by those inside and outside the medical community and is incorporated in a number of legal cases and statutes. While originally intended to signal a continuing, or persistent, condition from which recovery may or may not occur, the term has come to be widely used to refer to a permanent—not merely long-lasting—condition. Recently, experts have suggested that, to reduce confusion about the predicted duration of the condition, we should call patients who have recently entered the state as “vegetative” and call those patients for whom the condition is considered irreversible as “permanently vegetative.”⁴ In this book, I will, as much as possible, follow this recommendation (language quoted from other texts may still use the term “persistent” or the even more ambiguous “PVS”). How clearly the line can be established between the vegetative state and the permanent vegetative state will be covered later in this chapter. While there are no definite numbers of how many people live in a permanent vegetative state in this country, estimates range from 10,000 to 25,000 adults and 6,000 to 10,000 children.⁵ Approximately 4,200 new cases of vegetative state are diagnosed each year in the United States.⁶

There is some concern that the use of the term “vegetative” is demeaning because it suggests that the person is something less than a person, a mere “vegetable.” I am sympathetic to this argument. We need to understand and appreciate that all people, no matter their condition, are people and should be treated with respect and care. However, the terminology has become so widespread, with no alternative yet achieving any significant use, that to use a different term would cause confusion. My intention is to use the term itself with care—indeed, one concern I’ll raise throughout this book is that too often, people living in these highly dependent states too easily become objects or curiosities.

Diagnosis and Misdiagnosis

Recently—since Terri died, in fact—a number of scientific studies and articles have revealed new insights into the vegetative state and a related but very different condition, the minimally conscious state. Some of the popular press accounts of this research appear to cast doubt on issues highly relevant to the resolution of the Schiavo case and might appear to validate the concerns voiced by those who opposed the removal of Terri’s feeding tube. A reader of these accounts is led to wonder: can doctors adequately distinguish between patients with no consciousness and patients with some, even if minimal, consciousness? How reliably can doctors tell which patients have no hope of returning to consciousness and which have some potential of doing so? Is there really a complete loss of consciousness in vegetative patients?

The story of Terry Wallis—which hit the national news around the same time as Terri Schiavo’s case—is an especially alarming case of misdiagnosis. Following a severe traumatic brain injury, Wallis was diagnosed as permanently vegetative in 1989. He was discharged to a nursing home and, despite reported observations from his family that he could follow simple commands, was never reevaluated by a neurologist. His father’s requests for further evaluations were denied as too expensive and unhelpful.⁷ Nineteen years later, Wallis experienced a sudden, meaningful recovery that appeared miraculous. After nearly two decades of silence, he began speaking.⁸ In fact, a New Yorker article explained that when a medical researcher needed Wallis’s social security number in 2005 to help him receive assistance, Wallis himself provided it.⁹ Studying the brain imaging results from special MRIE techniques performed on Wallis, researchers have hypothesized that his brain developed “new connections between surviving neurons” that help explain his recovery.¹⁰ In other words, decades after entering what now clearly was not a permanent vegetative state but instead a minimally conscious state, Terry’s brain structures experienced new, unexpected growth that may help explain his recovery. Wallis appears to have transitioned from an initial coma, to a vegetative state lasting less than a year, to minimal consciousness and then ultimately, years later, emerged from a minimally conscious state. As Dr. Joseph Fins writes, “Wallis’s story is a cautionary tale.”¹¹ It reveals both the real possibility of misdiagnosis (some estimates put the error rate of diagnoses of minimally conscious patients as in a permanent vegetative state as high as 30 to 40 percent) and the consequent neglect of misdiagnosed patients, who are denied rehabilitative therapy as futile and given only “custodial care.”¹²

It is a horror we can all imagine. The parents of Terri Schiavo, like the family of Terry Wallis, insisted that she showed signs of consciousness, tracking objects with her eyes and following commands. Terri also was considered a hopeless case soon after she transitioned from her original sleeplike coma to a state of unconsciousness with sleep-wake cycles. Her parents have written that two weeks after Terri’s collapse, her doctors told them that she was “PVS” and that she was “never going to get any better.”¹³ She also, like Terry Wallis, received this grim diagnosis long before the medical community was aware that the early vegetative state could be a transitional condition to the minimally conscious state.¹⁴ Could she have also suffered from misdiagnosis and neglect?

The answer to that question, in short, is no. Nothing medical research has revealed since Judge George Greer’s original order in 2000 to remove Terri’s feeding tube has raised any real doubts about her diagnosis (vegetative state) or her prognosis (permanence of the vegetative state with no reasonable hope of recovery of any kind or degree). (The evidence about Terri’s condition will be covered later.) What the new research does reveal about other cases, however, is important to various issues discussed in this book.

Some people who work or study in the field of medical ethics have reacted to the new research into disorders of consciousness with disbelief and uneasiness—suspicious that the research may be motivated by a desire to diminish our rights to refuse treatment. A few whom I personally know were quick—too quick—during the pendency of the Schiavo dispute to dismiss the idea of the minimally conscious state as not a “real” diagnosis but something essentially “made up,” a category that was spliced so thinly from the condition of the permanent vegetative state that it was morally irrelevant. To them, the recently identified category served only to create doubt about the appropriateness of the removal of life support from patients who had no hope of any meaningful interaction with the world. Fins, an expert who has written extensively on vegetative and minimally conscious states, decried a similar reluctance to reckon with the minimally conscious state expressed in an e-mail forum of bioethicists. In an article in the American Journal of Bioethics, he writes, “Many of our colleagues cannot imagine life in a state of diminished consciousness and want to ‘protect’ patients and families from the horrors of severe brain injury. So disposed, they preclude the possibility that some patients may recover. . . . It is the mirror-image of those who sought to impose their religious beliefs on Terri Schiavo. Instead of imposing our views on families touched by severe brain injury, it is best to simply share what is known, and perhaps more critically at this early juncture, what is not known.”¹⁵

This chapter will examine what we know and are learning about the permanent vegetative state and the minimally conscious state and also the new, promising techniques to distinguish between the two. It will also review the evidence about Terri Schiavo’s condition.

Living Persons

One thing that is absolutely clear is that people in a permanent vegetative state are living. They are not dead under our current medical and legal understandings of death, which are the same because the legal definition of death draws from medical knowledge and practice. Despite a number of media references (even in such prestigious newspapers as the Wall Street Journal)¹⁶ that described Terri Schiavo as a “brain dead” woman, she was by all reasonable standards a living person during the controversy that surrounded her, mainly because her brain stem, which controls autonomic responses such as respiratory and cardiac activity, was still functioning. Someone who is brain dead is dead just like someone whose heart has stopped beating, but because the brain dead person’s breathing is maintained by a ventilator (to preserve organs for transplantation, for example), doctors cannot use signs of cardiopulmonary function to determine whether death has occurred.¹⁷ Brain function must be tested instead. If the ventilation of the brain dead patient were stopped, the patient’s breathing would also stop and ultimately so would the patient’s heart. Terri Schiavo could breathe on her own, without mechanical assistance, and was therefore, by all pertinent definitions, clearly a living, breathing person.

While not always appreciated during the Schiavo controversy, this distinction between permanent vegetative state and brain death is important. The duties we owe to the dead are weaker than those owed to the living. Indeed, our duties to the dead are often carried out because of concern, sympathy, and respect for the living—loved ones of the deceased. When people are alive, like Terri Schiavo was during the fight over her feeding tube, we owe them respect and care, beginning with as clear an understanding as possible of their situation.

Absence of Awareness

While people in a permanent vegetative state are not dead, their senses are absent—all of them. They have a “complete unawareness of the self and the environment.”¹⁸ In the short video clips that appeared on television and on the Web site that Terri’s parents maintained throughout their fight, Terri’s eyes appeared to be following a balloon, and she seemed to be smiling in response to her mother’s presence. But those tapes showed deceptively edited moments taken from hours and hours of videotaping in which Terri’s eyes wandered without purpose, without seeing, and in which her mouth might have appeared to show all sorts of expression, although they were not expressions relating to anything going on around her. Such “activity” is consistent with the diagnosis of a vegetative condition. According to expert Dr. Bryan Jennett, “What characterizes the vegetative state is the combination of periods of wakeful eye opening without any evidence of a working mind either receiving or projecting information, a dissociation between arousal and awareness.”¹⁹ Patients in a vegetative state exhibit some movements that may make them appear to be conscious. They may have startle reflexes, where the body reacts to a sudden stimulation. This is understandably very disconcerting to those around them.

Jennett provides this description: “The limbs are usually spastic and they may move in a nonpurposeful way and there may be groping movements. A grasp reflex may be set off by contact with bedclothes, the nasogastric tube or the hand of an observer and these may be misinterpreted as indicating voluntary movements or meaningful responses, especially by relatives seeking evidence for recovery. However, careful observation reveals no consistent movements that are voluntary or learned, or a response to command or mimicry.”²⁰

In addition, Jennett writes, “[m]ost patients show some response to painful stimuli. A stimulated limb may withdraw or there may be a generalized movement of all four limbs, sometimes accompanied by facial grimacing and perhaps a groan. There may also be a rise in respiratory and pulse rates and in blood pressure. It is generally held that these responses are all at a reflex level and do not indicate that pain is being experienced on a conscious level.”²¹

The report of Dr. Jay Wolfson, one of the independent guardians ad litem assigned by the court to protect Terri’s interests, reveals some of the difficulty laypeople have in comprehending the condition of the vegetative patient. Wolfson is not a medical doctor but a professor holding both a doctorate in public health and a law degree. He concluded in 2003, after reviewing the entire court file to date as well as clinical and medical records, that “highly competent, scientifically based physicians using recognized measures and standards have deduced, within a high degree of medical certainty, that Theresa is in a persistent vegetative state. This evidence is compelling.”²²

He also visited Terri almost daily for a month and observed nothing to call that conclusion into doubt. And yet he poignantly wrote in his report: “This having been said, Theresa has a distinct presence about her. Being with Theresa, holding her hand, looking into her eyes and watching how she is lovingly treated by Michael, her parents and family and the clinical staff at hospice is an emotional experience. It would be easy to detach from her if she were comatose, asleep with her eyes closed and made no noises. This is the confusing thing for the lay person about persistent vegetative states.”²³

For family members who love the patient, who seek any sign that the person they love is still able to perceive them, it can be very difficult to accept that the movements of the vegetative patient do not signal understanding or perception.

The Minimally Conscious State

Terri’s parents claimed that she was not in a vegetative state but rather in the recently recognized condition known as the minimally conscious state. Between 112,000 to 280,000 people in the United States are estimated to live in a minimally conscious state.²⁴ The critical difference between a minimally conscious state and a permanent vegetative state is that a patient in the former condition shows some level of cognitive function, while a diagnosis of permanent vegetative state means there is no evidence of cognition. The responses of a person in a minimally conscious state may be as simple as any intelligible verbalization or any purposeful behavior—such as reaching for objects—or any appropriate affective response to stimuli or the visual tracking of moving objects. Often such responses are inconsistent and infrequent, making it difficult to distinguish between the purposeful activity of a minimally conscious person and the random movements of the vegetative patient and requiring serial exam...

Table of contents

• Title Page
• Copyright Page
• Table of Contents
• Dedication
• Acknowledgements
• Introduction
• 1 - DISORDERS OF CONSCIOUSNESS AND THE PERMANENT VEGETATIVE STATE
• 2 - LEGAL AND POLITICAL WRANGLING OVER TERRI’S LIFE
• 3 - IN CONTEXT—LAW AND ETHICS
• 4 - TERRI’S WISHES
• 5 - THE LIMITS OF EVIDENCE
• 6 - THE IMPLICATIONS OF SURROGACY
• 7 - QUALITIES OF LIFE
• 8 - FEEDING
• 9 - THE PRESERVATION OF LIFE
• 10 - RESPECT AND CARE AN ALTERNATIVE FRAMEWORK
• APPENDIX: - THE NATIONAL RIGHT TO LIFE COMMITTEE’S MODEL STARVATION AND ...
• NOTES
• BIBLIOGRAPHY
• STUDIES IN SOCIAL MEDICINE