Persistative Vegetative State:

The Right to Die

Article One

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Tina Steele, MA

Tina Steele is a Science and Medical correspondent who will help you to understand the roles of conventional and alternative, or complimentary, medicine in creating and maintaining health and wellness.
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A Lesson on the Persistent Vegetative State and

THE RIGHT TO DIE

As a parent, I cannot imagine how devastating it must be to witness your child, no matter what age, slip beneath the cloth of consciousness into a world that few will mercifully ever know: Be it a coma, minimal consciousness, or, as in Terri Schiavo's case, a Persistent Vegetative State (PVS), the patient can be temporarily, but on occasion permanently, lost to us. We need to discuss this issue, not in the glare of a media feeding frenzy, or in the clamor of political grandstanding, but together, quietly, and rationally. This month we will do just that, and I will give you tools to make an informed choice, should you ever find yourself with a difficult decision to make.

The tragedy that has befallen Terri Schiavo and her family will likely resonate with us long into the future, and so it should. It could even be said that perhaps she was sent to give us a life lesson … we can only hope that we will eventually get it, and that she and her loved ones will find their own peace. One thing is for certain, not one of us should let another day go by without writing a living will (it can eve be done online at http://www.uslegalforms.com/living-will-forms.htm, or http://www.legaldocs.com/htmdocs/livin_st.htm, among others), and making our last wishes known in the event that we too should find ourselves thrust into the darkness, only to leave those we love with a terrible decision to make….I have my wishes in writing. In my family we are all in agreement; not one of us wants to live if severely mentally or physically impaired. It is not just that we believe that it would be nothing short of a living hell to be trapped inside a body broken immeasurably beyond repair, or a mind lost into the space of infinity with no way back, we believe that it is a shameful waste of resources, which would be better spent on those who have a chance to live a more full and joyous life.

Imagine how many children could have received life-saving treatments with the money that has been spent on keeping one woman in a Persistent Vegetative State, with no hope of recovery, for the past 15 years, not to mention all the lawyers' fees and court filing fees, the police and media personnel's paychecks. The amount is obscene. For the most part, Ms. Schiavo's care has come from a trust fund, formed as part of a million-dollar malpractice settlement, but that money has dwindled. Mr. Schiavo received $300,000.

Congress has been plotting to cut $14 billion in Medicaid funding for the poor and disabled, yet the hospice where Terri Schiavo has been treating her with funds used to treat the poor. This hypocrisy is indicative of how politicians have used this issue as a diversionary tactic, and another attempt for the religious right to hog the limelight. We even witnessed a president, who could not rouse himself to respond in a timely manner to the horrendous loss of life in South Asia, following the 9.0 quakes and tsunamis, was able to interrupt his vacation to fly to our Nation's capitol to sign into law a piece of legislation designed to limit even further our right to choose what happens to our bodies, in life and at its end. It has backfired, I am delighted to say. America is slowly waking up to the fact that politics has no place in our private and personal lives. Religion is also a highly personal issue and we should never seek to inflict our own spiritual beliefs upon others.

And just to clarify where so much of the firestorm surrounding this issue has come from, the Schiavo case has spawned a tidal wave of right-to-life rhetoric and a plethora of extremist blogs, not least of which is the highly distasteful and offensive online Empire Magazine, which claims to provide "News and Issues Every New Yorker Must Know". It is in fact published by a controversial ex-convict June Maxam, and Ginger Berlin, who, according to the Yonkers Tribune "…. lives in New York …In 2002 she served as Press Secretary for [arch-Conservative] Louis Wein, the Republican gubernatorial challenger to George Pataki." She has recently acceded to the chair of The Constitution Party of New York, which seeks to, among other distasteful efforts, "Restore the Second Amendment & Refuse to Enforce Federal Gun Control Laws That Infringe on the Right to Keep & Bear Arms, Abolish the Department of Education and End All Federal Funding of Local Education, [and] End "Legal" Abortion". Personally, I would not wish to rely upon their likes for ANYthing, but sadly they exemplify a trend towards fanaticism, which masquerades as social or political commentary, and is the sources of far too much misinformation.

The highly vocal, headline-grabbing and camera-hogging founder of Operation Rescue, Randall Terry, he of the early 90's abortion clinic perimeter-busting anti- choice movement, has resurfaced outside the Pinellas Park hospice where Terri Schiavo has been cared for. His presence yet another indicator of the appeal this case has had to the fringe element, which thrives on controversy, not to mention the politicos who owe their election to the religious-right. In reality, what this is and SHOULD be about, is the very private issue of personal choice and the jurisdiction of family members ONLY. Not fodder for the voracious lions waiting in the arena of public opinion.

Despite innumerable reports to the contrary, there are those, not least of whom being the parents and siblings of Terri Schiavo, who have repeatedly sought to refute the findings of the many medical doctors and the clear medical evidence showing that Ms. Schiavo is in a Persistent Vegetative State, without hope of rehabilitation. Perhaps it has been born of nothing more than the hope that it could be different, but the misguided belief that she has been responsive to them is at best na∑ve. Thus, it is my goal to provide you with some reliable and pertinent facts on the differences between the states of unconsciousness, and also the diagnostic criteria with which you may make informed decisions and dispel some, if not all of the myths that have surrounded this polemic issue. You will find a link to the World Federation of Right to Die Societies, and I am also giving you the link to another perspective, that of the Catholic Church, which I personally find to be divisive, discriminatory and intolerant - you be the judge though.

COMA: This is a state of profound, persistent unconsciousness, wherein the person is unaware of themselves or their surroundings. It is often the result of severe illness, stroke, or trauma, and the outcome will be largely dependent on the extent of the neurological damage and location in the brain where the damage occurred. In fact, according to the PBS show 'Nova' (http://www.pbs.org/wgbh/nova/coma/) "Head trauma is the number one cause of death and disability among people between the ages of one and 44." Coma can result in death; conversely recovery may be spontaneous and complete, or it may leave residual complications that require extensive rehabilitation. At times, the patient may recover only minimal bodily function. A coma may be of brief duration, but will not normally extend beyond 4 weeks. Conversely, the PVS can endure for many years, and may even follow a coma.

THE PERSISTENT VEGETATIVE STATE (PVS):

There is when the patient has lost cognitive neurological function. It is a syndrome comprised of a collection of reflex reactions, described by the two professors (Jennett and Plum) who first named the state as being without meaningful response. The patient maintains a sleep-wake pattern, but remains unaware of their surroundings, or stimuli. The Multi-Society Task Force on PVS, with the approval of the American Academy of Neurology, Child Neurology Society, American Neurological Association, American Association of Neurological Surgeons, and the American Academy of Pediatrics, arrived at the following definition:

 

* No evidence of awareness of self or environment and an inability to react with others.
* No evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile, or noxious stimuli. *No evidence of language comprehension or expression
* Intermittent wakefulness, manifest by sleep-wake cycles
* Sufficiently preserved hypothalamic and brain-stem automatic functions to permit survival with medical and nursing care
* Bowel and bladder incontinence
* Variably preserved cranial nerve reflexes (pupillary, occulocephalic, corneal, vestibulo-ocular, and gag) and spinal reflexes.

In short, a person in a PVS can breathe on their own, will experience sleep and waking cycles, and open and close their eyes, but will not react voluntarily to another person, temperature, pain, bad smells, sounds or other stimuli. They will not be aware of anything going on around them, and be incapable of expressing or understanding language. They will, however, have certain reflexes that can make them look almost normal, but these are part of the autonomic nervous system, which takes care of certain bodily functions without any interference or thought from us, an example of this would be the gag reflex (swallowing ). The Royal Hospital for Neuro-disability, in the UK (http://www.rhn.org.uk/institute/doc.asp?catid=1268&docid=251), explains some particularly confusing and misleading occurrences for the loved ones of someone in a PVS, for example:

"Changes in facial expression is an important part of human communication. Inevitably any change in facial expression suggests that there is awareness. However, the Multi-Society Task Force1 recognised that "They may occasionally smile, and a few may shed tears; some utter grunts or, on rare occasions, moan or scream." These features are, understandably, difficult for the inexperienced to accept as not indicating awareness.

One not uncommon finding is the patient laughs in response to statements by the family, and yet there is no other evidence of awareness. In these cases it is very common to find that the family are talking in a higher pitched voice, usually with rising tone – very similar to the 'goo-goo' language tone used with a baby to make it laugh. Indeed one of the diagnostic tests is to talk to the patient in nonsense language or with a very sad tale but told in the high-pitched, rising tone method of talk and see whether the patient still laughs"

PVS is diagnosed using several methods, not least of which would be visual clues and the criteria set forth by The Multi-Society Task Force. There is also the Positron Emission Tomography (PET) scan, which shows significantly lower glucose metabolism in PVS patients. CT scans and MRIs are also used.

There can be no doubt that PVS can and has been misdiagnosed, reportedly in some 17% of cases, but again, The Multi-Society Task Force consider data on 434 head injury patients and note that :

* Three months after injury, 33 percent of the patients had recovered consciousness; 67 percent had died or remained in a vegetative state. Recovery had occurred in 46 percent of patients at 6 months and in 52 percent at 12 months. Recovery after 12 months was reported in only 7 of the 434 patients. (Multi-Society Task Force, 1994)

After several years, the PVS patient is more likely to die of old age or pneumonia than to regain consciousness. Those who do regain some level of consciousness, after an extended period of time in a vegetative state, will probably be permanently and severely brain damaged. There are other states wherein the patient does retain some cognitive function, one is Minimal Consciousness, the other is Locked-in Syndrome.

MINIMAL CONSCIOUNSESS STATE (MCS):

The minimally conscious patient will demonstrate certain characteristics similar to those in a PVS, with the difference that they will show some occasional signs of cognition, in other words they will have some ability to understand language and have the ability to say a few words. They will also show some awareness of themselves and their surroundings.

"The Aspen Consensus Group define Minimal Conscious State as " a condition of severely altered consciousness in which minimal but definite behavioural evidence of self or environmental awareness is demonstrated" (http://www.rhn.org.uk/institute/doc.asp?catid=1268&docid=249). MCS requires a diagnosis where the patient demonstrates some functional awareness, interactive communication using verbalization, writing or signals, and the ability to differentiate between 2 objects. Using sophisticated imaging technology, Columbia University Medical Center, New York Presbyterian-Hospital-Weill Cornell Campus, and JKF Johnson Rehabilitation Institute in New Jersey found that severely brain-damaged MCS patients will show significant brain activity while listening to speech, which offers increased hope for rehabilitative processes.

Terri Schiavo has not demonstrated any of the criteria to suggest that she may be in a minimally conscious state, versus that of a vegetative one. Nor has she been in a locked in state.

LOCKE- IN SYNDROME (LIS):

LIS is invariably caused by a localized and specific trauma to a deep part of the brain; usually a stroke in the brain stem. Unlike PVS, wherein the patient has some involuntary movement but no cognitive function, someone who is locked-in is paralyzed, unable to move or speak, yet they usually maintain full mental alertness, which can be easily diagnosed using imaging techniques. Someone who is locked-in may be able to communicate using computerized adaptive technology.

So there you have it. I hope that you have been able to find some clarity and answers here, or at least been able to see the bigger picture…I also hope that you have taken the first step towards making out your living will. At this time of writing, Terri Schiavo is still alive, and still in a persistent vegetative state, but she cannot have much time left, provided that Nature is left to take her course. It is my deepest wish that she be allowed to pass on in peace and dignity, without further interference from the well, and not-so-well, intentioned. It remains to be seen if that will happen.

Tina Steele, MA

Visit Tina's website at: www.myhealthnavigator.com

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Here are the links I promised you:

Neurology channel's info on coma: http://www.neurologychannel.com/coma/

A highly informative paper that debates the PVS issue: http://www.thalidomide.ca/gwolbring/pvsilm.htm

Wrong Diagnosis.com: http://www.wrongdiagnosis.com/p/persistent_vegetative_state/intro.htm

Traumatic Brain Injury Site - PVS: http://www.neuroskills.com/index.shtml?main=/tbi/coma.shtml

Traumatic Brain Injury Minimally Conscious State: http://www.neuroskills.com/index.shtml?main=/pr-brainactivity.shtml

Annals of Internal Medicine – Comprehensive Ethics Positions: http://www.annals.org/cgi/content/full/128/7/576

CBC Article on Terri Schiavo; also includes 2 other famous cases: http://www.cbc.ca/news/background/schiavo/vegetative_state.html

CBS News.com Story – 3/22/05 - Vegetative State Gives False Hope: http://www.cbsnews.com/stories/2005/03/22/health/main682190.shtml

Royal Hospital for Neuro-disability's Definition of the Minimally Conscious State: http://www.rhn.org.uk/institute/doc.asp?catid=1268&docid=249

Royal Hospital for Neuro-disability's Comprehensive Definition of PSV: http://www.rhn.org.uk/institute/doc.asp?catid=1268&docid=251

World Federation of Right to Die Societies: http://www.worldrtd.net/faqs/tnd/?id=56

An Opposing Viewpoint - A Catholic Fundamentalist's Perspective: http://www.catholicculture.org/docs/doc_view.cfm?recnum=6388

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We are honored to have Tina Steele's participation and contributions to Pathfinders and look forward to learning of the ways our readers have benefited from her articles and guidance on healthcare.
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