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FIRST-PERSON: ‘Persistent Vegetative State’ is often confusing

ST. LOUIS (BP)–The Florida case of Terri Schiavo, the brain-injured woman at the center of a controversy surrounding attempts to remove her feeding tube, has focused national attention on one of the bioethical problems of our day — the “Persistent Vegetative State.”

The unfortunate term was coined in 1972, when two neurologists declared that they had identified a condition of “wakefulness without awareness” in which a patient, due to head injury, lack of oxygen or degenerative disease, has lost all upper brain functions. In the years since 1972, confusion in diagnosis, treatment and ethical decision-making regarding these patients has been the order of the day.

For example, the term Persistent Vegetative State, or PVS, has come to be applied to people who actually do show some signs of awareness. PVS often is confused with “brain death,” although the two are not the same. (Brain death is defined as the irreversible loss of all functions of the brain.) Tragically, “right to die” advocates have used the PVS to rally people to their cause, to the point that some state laws have been changed to classify food and water as medical treatment.

Persistent Vegetative State is not easily diagnosed. Although accepted signs of PVS include the absence of awareness of oneself or one’s environment, we cannot measure thought or awareness — only behavior and movement. Today’s medical tests are not specific enough to make a certain diagnosis of PVS. As a result, the rate of misdiagnosis appears to be very high, approximately 40 percent in some studies. Physical disabilities experienced by many of these patients, such as blindness and paralysis, can keep them from exhibiting behaviors that could make their awareness known. Video footage of Schiavo smiling and appearing to respond to her surroundings leads many to question whether she is actually in the PVS.

In reality, the 1972 definition and other more recent attempts to define PVS are not nuanced enough to describe the true state of many patients who have suffered severe brain injury. Part of the reason is that consciousness is a continuum, not an all-or-nothing phenomenon. In general terms, human brains aren’t like light bulbs that are either on or off. Instead, they are more like irons, which, while turned on, may be anywhere from warm to hot. Unfortunately, medical treatment and ethical decision-making have not always taken into account that there are many things that are still unknown about severe brain injury.

Some of the most promising work with severely brain-injured patients is taking place outside the United States, where low insurance reimbursement for intensive, long-term rehabilitation discourages the development of specialized centers for the treatment of PVS patients. One diagnostic tool, developed at the Royal Hospital for Neurodisability in London, has enabled medical professionals to identify awareness in patients previously diagnosed as unaware, some for as long as seven years. Some of these patients have begun to communicate, to regain some physical function and — importantly for ethical considerations — to express a wish to live.
Cindy Province holds master’s degrees in medical surgical nursing and bioethics, and she is a cofounder and associate director of the St. Louis Center for Bioethics and Culture.

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  • Cindy Province