The Terri Schiavo Case: Legal, Ethical, and Medical Perspectives

On 25 February 1990, Terri Schiavo, 26 years of age, collapsed in the hall of her apartment and experienced severe hypoxia for several minutes. She had not executed a living will or a durable power of attorney. Four months after her injury, Mrs. Schiavo was judged incompetent and her husband, Michael Schiavo, was appointed her legal guardian without objection from her parents, Robert and Mary Schindler. Because she was unable to swallow, Mrs. Schiavo underwent placement of a percutaneous endoscopic gastrostomy (PEG) tube. By late 1990, Mrs. Schiavo was determined to be in a persistent vegetative state. Understanding the Persistent Vegetative State The Schiavo case rests critically on the concept of the persistent vegetative state and the certainty of the prediction that a patient in this state will have no meaningful recovery. The persistent vegetative state is distinguished from several other states of reduced consciousness. Brain death implies the loss of not only all higher brain functions but also all brainstem functions, including pupillary light reflexes, reflex eye movements, respirations, and gag and corneal reflexes. Determination of brain death is straightforward and is generally accepted as a criterion for death. Coma is a complete state of unresponsiveness to stimuli, although the patient may have brainstem reflexes. Stupor and obtundation refer to states of reduced consciousness in which meaningful responses are still possible, if the patient receives enough stimulation. Finally, the locked-in syndrome denotes the condition of a patient who is paralyzed and cannot move or speak but is completely awake. Such patients can often communicate by blinking their eyes or looking up and down. The American Academy of Neurology, along with representatives of the American Neurological Association, the Child Neurology Society, the American Association of Neurological Surgeons, and the American Academy of Pediatrics, set up a Multi-Society Task Force to establish criteria for diagnosing the persistent vegetative state. In 1994, the Task Force published its findings (1-3), which have been adopted as a practice guideline by the American Academy of Neurology. The Task Force estimated that 10000 to 25000 adults and 6000 to 10000 children in the United States are in the persistent vegetative state. The criteria for this diagnosis must be met at least 1 year after traumatic brain injury in young patients and at least 3 months after nontraumatic illnesses. The Task Force reviewed case series from the literature, which included 434 adults and 106 children with traumatic brain injury and 169 adults and 45 children with nontraumatic injuries, mostly related to hypoxia. Of the patients in the persistent vegetative state for more than 3 months after nontraumatic injuries, the probability of moderate disability or good recovery was 1% (99% CI, 0% to 4%), but for patients still in the persistent vegetative state at 6 months, this probability was 0%. No patient, even those with traumatic brain injury, has been reported to recover after a full year of being in the persistent vegetative state. Delayed recoveries after traumatic brain injury are more common than with nontraumatic brain injuries. Certainly, no patient has recovered after 15 years, the period during which Terri Schiavo survived in this state. The criteria make clear that the patient can have periods of sleep alternating with periods of an awake-like state, in which his or her eyes are open and may move about, and the patient may breathe, yawn, and open his or her mouth, but not interact meaningfully with others (Table 1). Table 1. Requirements for the Examination of Persistent Vegetative State The Task Force discussed several causes of the persistent vegetative state. After acute traumatic and nontraumatic brain injury, this state usually evolves out of an initial coma. In degenerative and metabolic disorders of the nervous system, the patient gradually sinks into this state. Severe developmental malformations of the central nervous system can produce the persistent vegetative state, but only in patients with anencephaly can this diagnosis be made before 3 months of observation. In all cases, the persistent vegetative state is a diagnosis based on observation over time. Diagnostic tests, such as computed tomography (CT) scanning or magnetic resonance imaging (MRI), can document the loss of much of the cerebral cortex (4, 5). Functional brain imaging methods, such as functional MRI, single-photon emission CT, and positron emission tomography scanning (6, 7), may show the cortex's lack of arousal to stimuli, but these tests are still investigational and have been validated only in small case series. In general, the position of the Task Force was that diagnostic tests may support the dx of PVS [persistent vegetative state], but none adds to the diagnostic specificity with certainty (3). This recommendation has not changed in the years since the publication of the Task Force guidelines. A related issue is the distinction between persistent and permanent vegetative states. In general, although a vegetative state can be diagnosed at 1 month after an acute brain injury or hypoxia, the permanent vegetative state can be diagnosed after 3 months in patients with nontraumatic brain injuries and after 12 months in patients with traumatic brain injuries. This renders the definition of permanent vegetative state identical to the definition given above for persistent vegetative state. The guidelines also state: A PVS [persistent vegetative state] patient becomes permanently vegetative when the diagnosis of irreversibility can be established with a high degree of clinical certainty, i.e., when the chance of regaining consciousness is exceedingly rare (3). A final provision of the American Academy of Neurology practice guidelines discusses the decision to withhold fluids and nutrition through a feeding tube (Table 2) (8). Table 2. American Academy of Neurology Practice Guidelines The Legal History and Commentary Throughout the early 1990s, Michael Schiavo and the Schindlers worked together coordinating extensive rehabilitation efforts for Mrs. Schiavo, including regular and aggressive physical, occupational, and speech therapies. Despite their best efforts and explorations of all potentially viable treatments, her condition failed to improve. By the mid-1990s, Mr. Schiavo's relationship with the Schindlers had chilled. Increasingly, Mr. Schiavo understood that his wife's condition was irreversible. In addition, he insisted that he knew his wife would not want to live in a persistent vegetative state. The Schindlers, however, insisted that Mrs. Schiavo be kept alive through artificial nutrition and hydration. Unable to reach a consensus with his wife's parents, Mr. Schiavo decided not to request withdrawal of the PEG tube. Instead, he petitioned the guardianship court to function as the proxy and asked the court to make an independent determination of Mrs. Schiavo's terminal condition and to make the decision to continue or discontinue life-prolonging procedures (9). In January 2000, Judge George Greer held a trial to resolve the dispute over the extent of Terri Schiavo's neurologic devastation and to determine how she would exercise her right of privacy, or liberty interest, to forgo life-supporting medical treatment, if she were able to communicate. The proceeding was adversarial in nature, with both Mr. Schiavo and the Schindlers presenting witnesses and making arguments pursuant to the rules of evidence and civil procedure. It is important to note that end-of-life guardianship controversies, such as those that emerged in this case, are resolved on the basis of state law, which varies throughout the United States. In Florida, both statutes and case law recognize the fundamental right of every individual to control his or her person, regardless of the capacity to communicate (10). In Terri Schiavo's case, where the inability to communicate directly was established and no written medical directive existed, Florida law considers previously made oral declarations, as long as they satisfy the standard of clear and convincing evidence (11). At the 2000 trial, the opposing parties presented Judge Greer with Mrs. Schiavo's entire medical history, numerous exhibits, and the testimony of 18 witnesses, including the parties, 2 physicians, and various family members. On the first issue of her medical condition and whether Mrs. Schiavo had the ability or potential to communicate her wishes directly, the court found that she met the statutory definition of the persistent vegetative state and that there was no hope of her regaining consciousness or the ability to communicate (12). The court's analysis then shifted to the issue of exercising Mrs. Schiavo's autonomy rights, independently of state, family, or public opinion. After hearing from all of the witnesses and observing their cross examinations, Judge Greer determined that testimony from the 3 witnesses recalling Mrs. Schiavo's prior oral declarations that she would not want to live like that satisfied the clear-and-convincing evidence standard (12). Accordingly, the court ordered that the PEG tube be removed. The Schindlers appealed Judge Greer's decision. The appellate court reviewed both the substantive evidence and procedural formalities at the 2000 trial and concluded that after 10 years in a persistent vegetative state with no hope of recovery, the ultimate issue was whether Mrs. Schiavo would choose to continue the constant nursing care and the supporting tubes or whether she would wish to permit a natural death process to take its course (13). The appellate court affirmed Judge Greer's conclusion that the clear and convincing evidence required removal of the PEG tube. Judge Greer ordered cessation of Terri Schiavo's artificial nutrition and hydration on 24 April 2001. Two days later, however, the treatment resumed when the Schind