The Persistent Vegetative State-Emerging Clarity

Cindy Province
Reproduced with Permission

The Florida case of Terry Schiavo, the brain-injured woman at the center of a controversy surrounding attempts to remove her feeding tube, has recently focused national attention on one of the quintessential bioethics problems of our day - the "Persistent Vegetative State" (PVS). Half a world away, in Rome, Italy, 400 people from 46 countries met in March of this year to examine and report on state-of-the-art medical progress in assessing, diagnosing and treating the patient in PVS.

The unfortunate term "Persistent Vegetative State" was coined in 1972, when neurologists Bryan Jennett and Fred Plum 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 cortical (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" has come to be applied generically and often inappropriately to patients who actually do show some signs of awareness. PVS is often confused with "brain death", although the two are not the same. Tragically, "right to die" advocates have used the PVS as a galvanizing point to rally people to their cause. State laws have been changed to classify food and water as "medical treatment". What is clear about this condition is that few human diseases or disabilities generate more uncertainty and dread than does the PVS. Health professionals who care for patients in PVS have called this "the ultimate curse".

PVS is not easily diagnosed. Although accepted signs of PVS include the absence of awareness of self or environment, we can only measure such things as behavior and movement, not "thought" or "awareness". Advanced radiologic studies, while promising, do not yet have the level of specificity required to make a certain diagnosis of PVS. As a result, the rate of misdiagnosis appears to be very high, in some studies, approximately 40 percent. Physical disabilities experienced by many of these patients -- such as blindness and paralysis -- can prevent them from engaging in behaviors which could make their awareness known. Video footage of Terry Schiavo smiling and appearing to respond to her surroundings has aired on NBC's "Today Show", leading many to question whether she is actually in the PVS.

Thus the need for the Rome conference, entitled "Life Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas", which was sponsored by the International Federation of Catholic Medical Associations. The conference featured neurologists, bioethicists, therapists and others involved in the care of patients with severe brain injury. Speakers addressed a number of mistaken assumptions and misunderstandings regarding the PVS. As it turns out, the 1972 definition and other more recent attempts at description of PVS are not quite nuanced enough to express 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 light bulbs with an "on" and "off" switch, but instead are more like irons, with "warm" settings all the way up to "hot". Unfortunately, medical treatment and ethical decision-making have not always adequately reflected the tension between what we know about severe brain injury and what we still don't know.

Conference participants offered proposals for improving the care of PVS patients including the development of more specialized coma care units, nationwide registries for severe brain injury, and standardized diagnostic and assessment procedures. Some of the most advanced work with severely brain injured patients is taking place internationally and not in the U.S, where low insurance reimbursement for intensive, long-term rehabilitation discourages the development of specialized centers for the treatment of PVS patients. One of the most important advancements reported on at the conference is the Sensory Modality Assessment and Rehabilitation Tool (SMART), developed at the Royal Hospital for Neurodisability in London, England. The SMART has enabled medical professionals to identify awareness in patients previously diagnosed as "unaware", some for as long as seven years.

Additional work at the Royal Hospital has enabled some of these patients to begin to communicate, to regain some physical function, and -importantly for ethical considerations-to express a wish to live.

Pope John Paul II chose the final day of the conference to issue a significant statement on the PVS in which he affirmed the care we owe these patients, including nutrition and hydration, and called for improved medical care and rehabilitation for patients with brain injury. People of all faiths --and certainly the medical profession-- can embrace the Pope's statement as a profound and patient-centered ethical document. The Pope's full statement, as well as proceedings of the conference, can be accessed at