This article addresses some of the
scientific medical issues
surrounding brain damage and the labeling
of Schiavo's
condition.
Adrienne
In Sunday's Chicago
Tribune:
THE ISSUES RAISED BY THE TERRI SCHIAVO CASE
LINGER A
ND ARE AS COMPLICATED AS LIFE ITSELF
--Medical Facts are Cast Aside
By Lennard J. Davis, professor at the
University of Illinois at Chicago
in English, disability and human development and medical education
March 27, 2005
While she may be unable to help herself, Terri Schiavo has been immensely
useful to just about everyone else.
Progressives see any attempt to keep Schiavo alive as a plot by
conservative Christians and their Republican allies to push a "right to
life" agenda. Conservatives, for their part, think that Democrats are
shoring up their misguided position supporting physician-assisted
suicide, euthanasia, stem-cell research and abortion.
But how can legislators and citizens make decisions about this case when
they know little about the medical facts?
The most common misconception is that Schiavo is brain dead or
comatose--that is, completely unconscious without any chance of recovery.
In fact, she is not comatose but diagnosed as being in a "persistent
vegetative state."
This is a state defined as "wakefulness without awareness," and the
expectation is that there will be no recovery. Such patients may display
eye movements, laughter, crying, grunting or thrashing.
Yet this diagnosis is not just a simple, cut-and-dried category.
Persistent vegetative state is a diagnosis made by external observation
that infers a lack of consciousness.
No brain scan or MRI is used to confirm this neurological diagnosis.
Family and friends, who spend much more time with the patient, often make
a very different assessment, asserting that the patient has some minimal
consciousness.
Similar symptoms
A similar state, called "locked-in" syndrome, has very similar symptoms.
These patients have full consciousness, yet they cannot move or give a
sign that they are aware. Often, the only way they communicate is by
blinking their eyes. The only outward behavior that may separate
persistent vegetative state from locked-in syndrome is the patient's
ability.
The most famous of these cases was French author Jean-Dominique Bauby,
who wrote his memoir "The Diving Bell and the Butterfly" entirely by blinking
to indicate individual letters of the alphabet.
So it is possible that some people like Terri Schiavo actually may be
conscious but unable to signal that they are.
Doctors have a way of making us feel that medical definitions are
absolute. The rationale for starving and dehydrating someone like Schiavo
is that, because she is in a persistent vegetative state, she will never
recover. She is doomed to be "wakeful but unaware" for the rest of her
days.
in English, disability and human development and medical education
March 27, 2005
While she may be unable to help herself, Terri Schiavo has been immensely
useful to just about everyone else.
Progressives see any attempt to keep Schiavo alive as a plot by
conservative Christians and their Republican allies to push a "right to
life" agenda. Conservatives, for their part, think that Democrats are
shoring up their misguided position supporting physician-assisted
suicide, euthanasia, stem-cell research and abortion.
But how can legislators and citizens make decisions about this case when
they know little about the medical facts?
The most common misconception is that Schiavo is brain dead or
comatose--that is, completely unconscious without any chance of recovery.
In fact, she is not comatose but diagnosed as being in a "persistent
vegetative state."
This is a state defined as "wakefulness without awareness," and the
expectation is that there will be no recovery. Such patients may display
eye movements, laughter, crying, grunting or thrashing.
Yet this diagnosis is not just a simple, cut-and-dried category.
Persistent vegetative state is a diagnosis made by external observation
that infers a lack of consciousness.
No brain scan or MRI is used to confirm this neurological diagnosis.
Family and friends, who spend much more time with the patient, often make
a very different assessment, asserting that the patient has some minimal
consciousness.
Similar symptoms
A similar state, called "locked-in" syndrome, has very similar symptoms.
These patients have full consciousness, yet they cannot move or give a
sign that they are aware. Often, the only way they communicate is by
blinking their eyes. The only outward behavior that may separate
persistent vegetative state from locked-in syndrome is the patient's
ability.
The most famous of these cases was French author Jean-Dominique Bauby,
who wrote his memoir "The Diving Bell and the Butterfly" entirely by blinking
to indicate individual letters of the alphabet.
So it is possible that some people like Terri Schiavo actually may be
conscious but unable to signal that they are.
Doctors have a way of making us feel that medical definitions are
absolute. The rationale for starving and dehydrating someone like Schiavo
is that, because she is in a persistent vegetative state, she will never
recover. She is doomed to be "wakeful but unaware" for the rest of her
days.
But in the case of brain damage, things may
not be so simple.
The diagnosis of persistent vegetative
state was invented in 1972, but
Its utility has been questioned. According
to one study, 37 percent of the
time doctors incorrectly diagnosed
persistent vegetative states in
patients. If the diagnosis in Schiavo's
case was mistaken, perhaps she is
in a minimally conscious
state.
A recent study done by doctors at Columbia
Medical Center noted that
patients "who are treated as if they are almost completely unaware may in
fact hear and register what is going on around them but be unable to
respond."
Brain scans reveal that the language centers in these patients' brains
react like those of normal people to familiar voices. Recently, one
minimally conscious patient who had not talked for 20 years surprised her
caregivers by beginning to talk.
Another common error is that Schiavo is being kept alive by machinery,
and disconnecting it would end her life.
In fact Schiavo's body is fully able to carry out all the life processes
necessary to remain alive--all except the ability to swallow. The feeding
patients "who are treated as if they are almost completely unaware may in
fact hear and register what is going on around them but be unable to
respond."
Brain scans reveal that the language centers in these patients' brains
react like those of normal people to familiar voices. Recently, one
minimally conscious patient who had not talked for 20 years surprised her
caregivers by beginning to talk.
Another common error is that Schiavo is being kept alive by machinery,
and disconnecting it would end her life.
In fact Schiavo's body is fully able to carry out all the life processes
necessary to remain alive--all except the ability to swallow. The feeding
tube is not some high-tech device, but a
flexible, plastic tube that
permits food to pass to her stomach. Many people with full consciousness
make use of such an assistive device without thinking they are on some
high-tech form of life support.
Complex choices
A third misconception revolves around the complex choices people can make
about end-of-life decisions.
Many people have signed living wills that specify what they want to happen should they ever become unable to express their own will. In many states,
such documents require that you choose and approve a number of options,
including who will be your guardian and make decisions for you. But these
choices can be complex.
If you choose to be disconnected from life-support systems in New York
state, for example, you still have to indicate that you do not wish to be
fed and further indicate that you do not want to be hydrated.
In Schiavo's case there was no written directive. The court has therefore
relied on her husband's testimony. Since there are so many end-of-life
options, however, it is hard to know without written instructions exactly
what Schiavo meant. Did she mean that she didn't want to be on a
ventilator? Or did she mean that she wanted her life actively terminated
(which is against the law in all states)?
It is hard to imagine that she specifically meant that she wanted to be
dehydrated and starved to death. But maybe so.
Another area of confusion involves how we value life in a persistent
vegetative state, and whether such life is worth living. It is fair to
say that most people abhor the idea of being in such a debilitated state, and
many people say, "I'd rather be dead."
While such feelings are understandable, killing people in any debilitated mental or physical state is against the law in the United States. So, barring active euthanasia, is it really OK to sidestep the letter of the law by letting Schiavo die by indirect means over a couple of weeks?
Death by starvation and dehydration is long, uncomfortable, and
conceivably inhumane.
Public attitudes
Ultimately, Schiavo's case is most centrally about the attitude of the
public toward disability in general and severe disability in particular.
When both left and right operate with stereotypes and misconceptions, it
is hard to see the disability issue straight on.
But death is not a cure to be handed out lightly. This is not a case for
the left and right to haggle over.
It is more about the limits of our knowledge and the power of the
Hippocratic oath, which says, "Do no harm."
Copyright (c) 2005, Chicago Tribune
permits food to pass to her stomach. Many people with full consciousness
make use of such an assistive device without thinking they are on some
high-tech form of life support.
Complex choices
A third misconception revolves around the complex choices people can make
about end-of-life decisions.
Many people have signed living wills that specify what they want to happen should they ever become unable to express their own will. In many states,
such documents require that you choose and approve a number of options,
including who will be your guardian and make decisions for you. But these
choices can be complex.
If you choose to be disconnected from life-support systems in New York
state, for example, you still have to indicate that you do not wish to be
fed and further indicate that you do not want to be hydrated.
In Schiavo's case there was no written directive. The court has therefore
relied on her husband's testimony. Since there are so many end-of-life
options, however, it is hard to know without written instructions exactly
what Schiavo meant. Did she mean that she didn't want to be on a
ventilator? Or did she mean that she wanted her life actively terminated
(which is against the law in all states)?
It is hard to imagine that she specifically meant that she wanted to be
dehydrated and starved to death. But maybe so.
Another area of confusion involves how we value life in a persistent
vegetative state, and whether such life is worth living. It is fair to
say that most people abhor the idea of being in such a debilitated state, and
many people say, "I'd rather be dead."
While such feelings are understandable, killing people in any debilitated mental or physical state is against the law in the United States. So, barring active euthanasia, is it really OK to sidestep the letter of the law by letting Schiavo die by indirect means over a couple of weeks?
Death by starvation and dehydration is long, uncomfortable, and
conceivably inhumane.
Public attitudes
Ultimately, Schiavo's case is most centrally about the attitude of the
public toward disability in general and severe disability in particular.
When both left and right operate with stereotypes and misconceptions, it
is hard to see the disability issue straight on.
But death is not a cure to be handed out lightly. This is not a case for
the left and right to haggle over.
It is more about the limits of our knowledge and the power of the
Hippocratic oath, which says, "Do no harm."
Copyright (c) 2005, Chicago Tribune
Doyle Saylor writes,
...First and foremost, the disabled rights community sees Schiavo as disabled.
Those who support the right to pull the plug often argue this person is dead
already. Or more blandly 'not there'. However, the medical judgment
persistent vegetative state, is not the same as brain dead. In any case the
claim Schiavo is not there is a metaphysical construct rather than a realism
about what exactly we are dealing with.
...We can support the civic structures that give the husband the right to
choose. We can also support the parents were they legally given the right
to choose to let Schiavo continue to live this way. And we do not advocate
putting Schiavo to death because she is not there. And we have many
perfectly sound arguments in a scientific sense against the right to suicide
movement.
I would suggest that most of the left anger here has to do with personal
experience of some relative at the end of the life. And the family deciding
that some medical procedure should stop. That would naturally vary from
person to person when they stop that. This process is purposefully left to
the family to decide rather than the state. Doctors who take that into
their hands are consider mercy killers when they are found out. Though
there is fine line between some doctor who pulled a plug for the family and
someone who just thinks they are angel of mercy. And I would not condemn a
doctor who really is acting in the family's name.
The arena of unity between disability rights activists and the larger
progressive community is support of civic structures. The wedge issue is
the right to die versus disabled rights. It is obvious Bush wants to pull
down judges independent constitutional perspectives by using the blunt
instrument of religious solidarity against that. Defending the civic
structures is in the interests of all progressives.
...On the other hand, the science of consciousness is moving toward this area
in a definite sense. While some might claim right now a cure for these
things and be giving false hopes for bad reasons. There is already a part
of the democratic party that supports this view of offering hope for a cure.
Those who held up Christopher Reeves as a model of disabled persons. Reeves
often claimed the cure was just on the horizon. Stem cell research is being
promoted upon this hope.
Militant disabled rights groups advocate a different position than Reeves.
They advocate accepting people for who they are. So they eschew arguing for
a cure. So for them it is enough to give life support to a vegetable. That
vegetable to disabled rights folks is a disabled human being. The argument
they are not there is the crux of our differences with the right to die
argument.
One can then make a hypothetical strictly about the concept of being there.
Taking Reeves point of view, can we insert stem cells at some point perhaps
in Schiavo's life time? Can we in "Not Dead Yet's" terms say let them live
without a cerebellum? Why is this strictly a case of pulling the plug
versus disabled rights. Why is this the necessary dividing line to expel
the vile disable rights movement?
In most of this situation for the last few days defining this has been about
intense passion. Positions held to the death. Passion is an important part
of building progressive political movements. I'm not going to give up here
my disable rights position to go along with the pull the plug argument that
Schiavo is brain dead.
What I see is the lack of left institutions to even realistically address
the profound scientific issues that this brings up. The sense of national
unity and purpose that Venezuela might embody, or Cuba. Instead this is a
momentary rise of passions on the left in which the complexity of the
disable rights movement has hit the radar, but will subside soon, and we'll
still have not established a unified movement. Except a lot of people will
still be dithering about which side I'm on instead of knowing there are ways
to unite everyone without destroying the disabled rights community.
That's what is at stake here. Out numbered and facing reckless charges on
all sides from what ought to be friends, our enemies are bringing pressure
bear upon us to break away from our current disabled people are part of the
disabled rights movement to a position that is equally narrow and
unrepresentative of the left. The most civilized voice in my view who has
not agreed to the Disability Rights movements views has been Max Sawicky.
We can't just have one or two friends though. There has to be people like
Carroll Cox get down from the rigidity of their just kill them vegetables
perspective and admit this is a bit more complex than the attackers make it
out to be.
thanks,
Doyle Saylor
