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OPTMISM
Bruce T. ADORNATO
Optimism in the face of conflict, tragedy and suffering is a virtue. While we experienced the daily media barrage of the case of Terri Schiavo and the strong opinions of commentators, politicians, judges, ethicists, clergy, blogsters, family, friends, experts (real and self-imagined), presidents, popes and pretty much everyone else with a pen, a keyboard or a microphone, I believe something good can come out of all this.
As a neurologist, it is often my role to examine, document and comment on prognosis and treatment options. Too many times to count, I have been called to the bedside to review for families and their physicians, the condition of the unresponsive and minimally responsive in the setting of brain injury. It might be useful to review some fundamentals.
Coma is a condition of unresponsiveness to stimulation, be it visual, auditory or tactile. It is due to permanent or nonpermanent impairment of the brain from any cause, e.g. drug overdose, hypothermia, infection-inflammation, hypoglycemia, hypernatremia, hyponatremia, hypoxia, ischemia, status epilepticus, etc., etc. How you measure and interpret unresponsiveness is often key and may be subject to interpretation, as we have seen in the Schiavo matter.
At one extreme is "brain death". With preserved cardiopulmonary function, brain death is actually relatively rare. Brain death is defined as complete cessation of brain function without respiration or any reflex including papillary responses, gag, or any reflexive motor movement and an isolectric (flat) eeg or other technical demonstrations such as absent cerebral blood flow. "Brain death" was defined more than 40 years ago at Harvard to protect patients in the setting of the newfound technology of organ transplantation.
The persistent vegetative state (PVS) was defined by Dr. Bryan Jennett, a Scottish neurosurgeon, and Dr. Fred Plum, an American neurologist in 1972. The definition, to quote the special two-part article published in The New England Journal of Medicine in 1994 (available www.NEJM.org), is "a clinical condition of complete unawareness of the self and environment, accompanied by sleep-wake cycles, with either complete or partial preservation of hypothalamic and brain-stem autonomic functions. In addition, patients in a vegetative state show no evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile or noxious stimuli; show no evidence of language comprehension or expression; have bowel and bladder incontinence; and have variably preserved cranial nerve and spinal reflexesÉ".
The article goes on to define the diagnosis' validity only after one month in this state, and further distinguishes the traumatic from nontraumatic causes by stating that recovery is "unlikely" after 12 months after a traumatic cause and "exceedingly rare" after 3 months in nontraumatic PVS in both adults and children.
The NEJM website PVS citation and full text is well referenced and includes many thoughtful subsequent articles and letters that discuss the diagnosis of consciousness, the possible misdiagnosis of PVS, the ethics of tube feeding and nutritional support, and the neuropathological findings in PVS. As these two articles are the approved statement on PVS of a joint task force of the American Academy of Neurology, Child Neurology Society, American Neurological Association, American Association of Neurological Surgeons, and the American Academy of Pediatrics, they are landmark papers, although 10 years old.
The problem in the Schiavo case and in virtually every case of PVS I have personally been involved with is that there is always the question raised of how do you know for certain that a muscle movement or an eye flicker or groan or a grimace or a tear or some other sign is not a reflection of some underlying partial, minimal or transient form of consciousness? The answer is that a judgment is made. A clinical diagnosis is a judgment based upon the preponderance of evidence - the history of the inciting events, the clinical course, the physical and neurological examination in seriatim, the MRI scan, the EEG, the lab studies and whatever other facts which can be brought to bear. And this evidence is considered in the light of what we know neuropathologically about similar cases with similar clinical settings, similar examinations, laboratory results, EEGs and MRI findings.
In my experience, most neurologists and neurosurgeons who daily deal with brain injury accept the concepts of PVS and its ramifications. A few do not, and there is a concept of "minimal consciousness" which is ultimately untestable and a matter of individual belief. What is demonstrable and tangible is that after months and years in this state, the prognosis - be it unconscious or "minimally" conscious - is permanent by any medical standard or measure of which I am aware.
One condition which gets to the heart of the matter is the locked-in syndrome. It is a condition you never wish to misdiagnose and if you see, you will never forget. The usual setting is a basilar artery thrombosis destroying all the motor outflow tracts below the level of eye movement control, leaving the cerebral cortex intact. The victim loses all motor responsiveness including voice, facial expression, and limb movement but retains consciousness to be manifest only by the ability to signal by eye movements. It is permanent.
We can divide ourselves into two distinct camps: those of us who would wish to be maintained in this state or PVS and those of us who would rather be without a heartbeat. Making your opinion about this known and documenting your wishes in writing is crucial.
In California, we have an Advance Health Care Directive which is the legally recognized format to state your desire not to receive life-sustaining treatment if you are terminally ill or unconscious (or minimally conscious) and also to state your desires about your health care in any situation in which you are unable to express your own opinion. It also allows you to designate someone you trust to speak for you when you are incapable to do so yourself. You can get all the information you need (including a "kit") by going to the California Medical Association website (www.cmanet.org/) or googling (www.google.com) - "california advance care directives". And while you are planning your future, also consider signing up with the California Transplant Donor Network (www.ctdn.org). Do it today. You never know. Optimism has its limits. Foresight has virtues.
