A Lesson on the Persistent Vegetative State and
RIGHT TO DIE
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.
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,
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.
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
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
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.
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
"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):
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
* 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.
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:
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.
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"
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.
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)
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.
CONSCIOUNSESS STATE (MCS):
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.
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.
IN SYNDROME (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
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's website at:
are the links I promised you:
channel's info on coma:
highly informative paper that debates the PVS issue: http://www.thalidomide.ca/gwolbring/pvsilm.htm
Brain Injury Site - PVS: http://www.neuroskills.com/index.shtml?main=/tbi/coma.shtml
Brain Injury Minimally Conscious State: http://www.neuroskills.com/index.shtml?main=/pr-brainactivity.shtml
of Internal Medicine – Comprehensive Ethics Positions: http://www.annals.org/cgi/content/full/128/7/576
Article on Terri Schiavo; also includes 2 other famous cases:
CBS News.com Story – 3/22/05 - Vegetative State Gives False Hope:
Hospital for Neuro-disability's Definition of the Minimally Conscious
Royal Hospital for Neuro-disability's Comprehensive Definition
of PSV: http://www.rhn.org.uk/institute/doc.asp?catid=1268&docid=251
Federation of Right to Die Societies: http://www.worldrtd.net/faqs/tnd/?id=56
Opposing Viewpoint - A Catholic Fundamentalist's Perspective: