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Recovery from persistent vegetative state?: the case of Carrie Coons.

Recovery from Persistent Vegetative State?: The Case of Carrie Coons How reliable is a diagnosis of irreversible unconsciousness? In a unique case in New York, a state Supreme Court judge vacated an order allowing removal of life-sustaining treatment after Carrie Coons showed signs of recovery from a diagnosed vegetative state.

On April 9, 1989, Carrie A. Coons, an eighty-six-year-old Rensselaer, New York woman who had been diagnosed as being in a persistent vegetative state (PVS) regained consciousness, took small amounts of food by mouth, and engaged the next day in conversation. Only days before, a judge had granted her family's request that the feeding tube keeping her alive be removed. Mrs. Coons's unexpected recovery has left her doctor and family baffled. Medically, this case raises questions regarding the reliability of a diagnosis of irreversible unconsciousness. Legally, it raises questions regarding when, and on what basis, life-supporting treatment may be discontinued.

Mrs. Coons had a massive stroke in late October 1988. Initially, she had done well, but her condition deteriorated in late November. She suffered a major brain bleed, and entered a vegetative state, which persisted for several months. During that time she neither spoke nor showed any signs of alertness. She was able to breathe on her own, but could not take food orally. A gastrostomy tube (g-tube) was surgically inserted to give her fluids and nutrition; a computerized tomography (CT) scan and electroencephalogram (EEG) supported the clinical diagnosis of persistent vegetative state.

In late January 1989, Mrs. Coons's sister, Edith I. Gannon, with whom Mrs. Coons had lived, asked that the feeding tube be removed. She maintained that her sister never wanted to be kept alive in this condition. Dr. Michael L. Wolff, a gerontologist and nationally recognized specialist in geriatric medicine, was asked to evaluate the patient. Dr. Wolff suggested having another scan to confirm the diagnosis of PVS. He also thought that a scan might reveal hydrocephalus, in which case Mrs. Coons might need a shunt to drain fluid from her skull. The family expressed to Dr. Wolff their feeling that further procedures at this time were unduly invasive and unnecessary. Had they been offered a second, confirmatory brain scan in November, when they still had hope for her recovery, they would have willingly agreed. Under the present circumstances, Mrs. Gannon absolutely refused to consent to an operation. She asked Dr. Wolff not to perform any more tests, not to call in any more consultants, but just to "let my sister be."

In March 1989, relatives testified at a hearing that for fifty years before her stroke, Mrs. Coons had expressed a desire not to be kept alive artificially. Dr. Wolff testified that the family had refused consent for a shunt, and that he agreed that a shunt would not be in accord with prevailing medical standards. He told the judge the Mrs. Coons had been in a vegetative state for four and a half months, and that, in his opinion, her condition was irreversible. State Supreme Court Judge Joseph Harris ruled on April 4, 1989 that the tube could be removed, allowing Mrs. Coons to die. This makes Mrs. Coons the first New Yorker for whom a right-to-die petition was approved since the state's highest court, the Court of Appeals, authorized in 1988 the removal of feeding tubes in cases in which the prior wishes of an incompetent patient could be proved.

However, Mrs. Coons unexpectedly regained consciousness, apparently as the result of aggressive efforts by the nursing staff to stimulate and feed her. When Dr. Wolff visited Mrs. Coons on Monday, April 10, he explained that with a feeding tube, she could probably live two or more years. Without it she could die in two weeks. When asked what she wanted done, she replied, "That's a very difficult decision to make." Dr. Wolff telephoned the family's lawyer, Charlotte Buchanan, to alert her to the change in Mrs. Coons's condition and to suggest that she inform Judge Harris. A second hearing was held on Tuesday, April 11, at which Judge Harris vacated his order of April 4.

The medical testimony originally presented to Judge Harris had stated that Mrs. Coons's condition was "hopeless and irreversible." Obviously, that assessment of her condition was wrong. One possibility is that she was misdiagnosed. Although she showed classic signs of being in a persistent vegetative state, she was not examined by a neurologist. Nor was the recommended further scan performed in light of the family's opposition. Had Mrs. Coons been forty-six, instead of eighty-six, Dr. Wolff acknowledges that he probably would have insisted on further tests. In addition to CT scans, there are other, more high-tech tests such as the positron emission tomography (PET) scan or magnetic resonance imaging (MRI). These tests are sometimes used to confirm a CT scan, but it is not clear that they are necessary or more reliable.

Another possiblity is that Mrs. Coons did meet the criteria for persistent vegetative state, and that no further tests, or interpretation of the tests by a neurologist, would have yielded a different diagnosis. Current tests for persistent vegetative state are not 100 percent reliable, even when carefully performed and interpreted. There have been a few cases of patients who have recovered consciousness after a year of being in a vegetative state from hypoxia (lack of oxygen to the brain). Tests done on these patients indicated such severe brain damage as to make recovery impossible. Despite such cases, most neurologists are quite confident about their ability to diagnose PVS. They argue that a few diagnoses that proved to be wrong do not show either the criteria or methods of application to be unreliable, only fallible.

Legally, the case is unique in New York State: It is the first time a judge has thrown out an order allowing removal of life-sustaining medical equipment because the patient showed possible signs of recovery. However, her physician cautions that Mrs. Coons is not "up and dancing around." Her recovery may be very limited; she may lapse back into a vegetative state. At least for the time being, the legal situation is unclear. So far, psychological evaluation has found her to be not competent. If Mrs. Coons is determined at some future time to be competent, but permanently reliant on the feeding tube, she would have the right, under state law, to decide whether the tube should be removed. Her court-appointed lawyer, Raymond A. Kelly Jr. found her lucid and able to speak during a recent visit, but said that she would "like to wait" on any decision about the feeding tube.

Dr. Wolff does not think that Mrs. Coons has ever been "lucid." He characterizes her as "more or less communicative" and notes that her responses are often inconsistent. He worries whether it is fair to ask someone in her condition to make decisions about her future medical care.

At present, Mrs. Coons is still dependent on the feeding tube to stay alive. As long as she is conscious and responsive, there is no question of removing the tube, absent explicit directions from her that this is what she wants. Should Mrs. Coons lapse into a persistent vegetative state, her sister could again petition the court to permit removal of the feeding tube. It is likely that the court would consider such a request only if the diagnosis of PVS were made by an independent neurologist, on the basis of further tests. (It would seem reasonable to have this required by law.) In addition, a court could order the removal of the feeding tube only if there is "clear and convincing evidence" that this is what Carrie Coons would have wanted. Faced with a new petition, a judge will have to decide how to weigh Mrs. Coons's reported lifelong feelings about being artificially kept alive against her recently expressed ambivalence about having the tube removed. Which views are those of "the real Mrs. Coons"?

One could argue that her most recent statements should be given the most weight. It is one thing to say, hypothetically, "I would not want to live like that," quite another to refuse life-sustaining treatment in the actual situation. Any ambivalence now negates previously given evidence, however "clear and convincing," that she would want the tube removed.

In most cases, courts are forced to rely on past statements to hypothesize what the patient would want, because a patient in PVS cannot tell us. The Quinlan court, for example, maintained that there was no doubt that Karen Quinlan would ask to have the respirator removed, were she to become "miraculously lucid" for an interval, knowing that she would return shortly to a permanently unconscious state.

In my view, the Coons case reveals the limitations of the Quinlan test, as realistically applied. First, the Quinlan court imagined Karen becoming "miraculously lucid," something that is unlikely of someone who has been unconscious for several months. Second, the court imagined that Karen would know that she would shortly return to her permanently unconscious condition. Even if Mrs. Coons were completely lucid, she might have difficulty imagining this situation, having already once beaten the odds and regained consciousness. She is in a similar position to someone who has just survived an airplane crash, and is told that, statistically, flying is much safer than driving. Her views about airplane safety are not likely to be objectively rational. It is not even clear that what she says about flying, right after a crash, can be said to be her own true beliefs. Her capacity for assessing evidence has been affected by her own bizarre experience. Similarly, we cannot determine what Carrie Coons would want done by relying exclusively on statements she makes immediately on regaining consciousness. Such statements must be considered in the context of a lifetime of preferences, values, and choices.

There may be some people who would want to be kept alive in a persistent vegetative state, because of their beliefs about the sanctity of human life (even permanently unconscious life), or because of the chance of recovery. Others are appalled at the prospect, regarding such an existence as contrary to human dignity. They regard the extremely remote chance of recovery as insufficient to justify being artificially sustained under such conditions. It would be equally wrong to deny treatment to someone who wanted it, or to force treatment on someone who did not. Nothing can make easy the task of determining in which category a patient belongs. Courts should resist the temptation to oversimplify this job by treating a patient's utterances during brief periods of consciousness as determinative. Bonnie Steinbock is an associate professor of philosophy and public policy at the State University of New York at Albany.
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Author:Steinbock, Bonnie
Publication:The Hastings Center Report
Date:Jul 1, 1989
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