Re: cruzan v schiavo what a difference a decade makes

Really sorry to jump in on this over-long thread that seems to have
passed onto other things. It's only this morning, when on leave from
work, that I had the time or energy to get through it all. Like most
people, I'm bewildered by it all, and moved by the tragedy of it.

My one observation is that this has generated a lot of rhetoric, and
emotional argument, rather than rational discussion. This is always
going to happen in fraught situations like this. As often happens
here, arguments are twisted, and straw-men erected and emphatically
destroyed. A good example of this can be found on the website at
http://www.terrisfight.net . The home page has a side box that asks
the question

"Is Terri in an unresponsive coma and hooked to life support machines?"

The answer given is as follows:

"Absolutely not! Terri is purposefully interactive, alert, curious,
lovely young woman who lives with a very serious disability. She
lives free of any life support machines and receives nutrition through
a tube that is connected only at meal times. "

The problem I have with the question and answer is that the issue of
whether Terri is in a coma is not at stake. As I understand it,
"coma" and "persistent vegetative state" are different in that one
implies unconsciousness, and the other one implies consciousness.
These definitions from
http://healthlink.mcw.edu/article/921394859.html (the first hit from
Google that gave me a definition of the two states - I'm not expert
enought to know if it's right).

 A coma is a profound or deep state of unconsciousness. The affected
individual is alive but is not able to react or respond to life around
him/her. Coma may occur as an expected progression or complication of
an underlying illness, or as a result of an event such as head trauma.

Quote:
A persistent vegetative state, which sometimes follows a coma, refers
to a condition in which individuals have lost cognitive neurological
function and awareness of the environment but retain noncognitive
function and a perserved sleep-wake cycle.

It is sometimes described as when a person is technically alive, but
his/her brain is dead. However, that description is not completely
accurate. In persistent vegetative state the individual loses the
higher cerebral powers of the brain, but the functions of the
brainstem, such as respiration (breathing) and circulation, remain
relatively intact. Spontaneous movements may occur and the eyes may
open in response to external stimuli, but the patient does not speak
or obey commands. Patients in a vegetative state may appear somewhat
normal. They may occasionally grimace, cry, or laugh.
End Quote:

So the question/answer box on the terri's fight website fails because
it gives the right answer to the wrong question. Is Terri in a coma?
Irrelevant question - she sleeps and wakes etc. But the rest of it is
more interesting. The answer claims that she is "purposeful and
curious".

As to whether her responses are purposeful or if she is indeed in a
PVS is difficult to tell. The occasional grimace, cry or laugh
doesn't, according to the above quote, make you purposeful.

So I offer instead the following article on the same web-site, from
the Schindlers' attorney. I think a lot of the article is again
emotionally motivated - the author does not help her case (for me) by
describing how beautiful she looks (as if that mattered in this issue
- ugly people have just as much right to live as beautiful ones).
However, the more objective narrative about her interactions with her
parents, the little game of "lemon face" when her father kisses her
with his tickly moustache, and the observations or her interaction and
response to the environment, seem to tell me that this is somewhat
more than a "Persistent Vegetative State" with the occasional grimace,
laugh or cry.

Perhaps, Jack, as a neurologist, you could offer your opinion on this?
 Obviously I'm not an expert here, and may be being manipulated by the
article. I can sort out the obvious misleading stuff ( how beautiful,
the stuff about the inner light in her face), but when that filter is
applied, what stands out to me is still a real person with emotions
etc.

Sorry, it's a long post with the article etc. Hope I haven't fanned
the flames once more.

Iain

A Visit With Terri Schiavo

Attorney Barbara Weller

This past Christmas Eve day, 2004, I went to visit Terri Schiavo with
her parents, Bob and Mary Schindler, her sister, her niece, and
Attorney David Gibbs III. The visit took place at the Woodside Hospice
for about 45 minutes just before noon.

When I knew I was going to visit Terri with her parents, I had no idea
what to expect. I was prepared for the possibility that the Schindlers
love their daughter and sister so much that they might imagine
behaviors by Terri that aren't actually evident to others. The media
and Mr. Schiavo clearly give the impression that Terri is in a coma or
comatose state and engages only in non-purposeful and reflexive
movements and responses. I am a mother and a grandmother, as well as
one of the Schindlers' attorneys, and I could understand how parents
might imagine behavior and purposeful activity that is not really
there. I was prepared to be as objective as I could be during this
visit and not to be disappointed at anything I saw or experienced.

I was truly surprised at what I saw from the moment we entered the
little room where Terri is confined. The room is a little wider than
the width of two single beds and about as long as the average bedroom,
with plenty of room for us to stand at the foot of her bed. Terri is
on the first floor and there is a lovely view to the outside grounds
of the facility. The room is entered by a short hallway, however, and
there is no way for Terri to see out into the hallway or for anyone in
the hallway to observe Terri.

From the moment we entered the room, my impression was that Terri was
very purposeful and interactive and she seemed very curious about the
presence of obvious strangers in her room. Terri was not in bed, but
was in her chair, which has a lounge chair appearance and elevates her
head at about a 30-degree angle. She was dressed and washed, her hair
combed, and she was covered with a holiday blanket. There were no
tubes of any kind attached to her body. She was completely free of any
restraints that would have indicated any type of artificial life
support. Not even her feeding tube was attached and functioning when
we entered, as she is not fed 24 hours a day.

The thing that surprised me the most about Terri as I took my turn to
greet her by the side of her chair was how beautiful she is. I would
have expected to see someone with a sallow and gray complexion and a
sick looking countenance. Instead, I saw a very pretty woman with a
peaches and cream complexion and a lovely smile, which she even
politely extended to me as I introduced myself to her. I was amazed
that someone who had not been outside for so many years and who
received such minimal health care could look so beautiful. She
appeared to have an inner light radiating from her face. I was truly
taken aback by her beauty, particularly under the adverse
circumstances in which she has found herself for so many years.

Terri's parents, sister, and niece went immediately to greet Terri
when we entered the room and stood in turn directly beside her head,
stroking her face, kissing her and talking quietly with her. When she
heard their voices, and particularly her mother's voice, Terri
instantly turned her head towards them and smiled. Terri established
eye contact with her family, particularly with her mother, who spent
the most time with her during our visit. It was obvious that she
recognized the voices in the room with the exception of one. Although
her mother was talking to her at the time, she obviously had heard a
new voice and exhibited a curious demeanor. Attorney Gibbs was having
a conversation near the door with Terri's sister. His voice is very
deep and resonant and Terri obviously picked it up. Her eyes widened
as if to say, "What's that new sound I hear?" She scanned the room
with her eyes, even turning her head in his direction, until she found
Attorney Gibbs and the location of the new voice and her eyes rested
momentarily in his direction. She then returned to interacting with
her mother.

When her mother was close to her, Terri's whole face lit up. She
smiled. She looked directly at her mother and she made all sorts of
happy sounds. When her mother talked to her, Terri was quiet and
obviously listening. When she stopped, Terri started vocalizing. The
vocalizations seemed to be a pattern, not merely random or reflexive
at all. There is definitely a pattern of Terri having a conversation
with her mother as best she can manage. Initially, she used the
vocalization of "uh'uh" but without seeming to mean it as a way of
saying "no", just as a repeated speech pattern. She then began to make
purposeful grunts in response to her mother's conversation. She made
the same sorts of sound with her father and sister, but not to the
same extent or as delightedly as with her mother. She made no verbal
response to her niece or to Attorney Gibbs and myself, but she did
appear to pay attention to our words to her.

The whole experience was rather moving. Terri definitely has a
personality. Her whole demeanor definitely changes when her mother
speaks with her. She lights up and appears to be delighted at the
interaction. She has an entirely different reaction to her father who
jokes with her and has several standing jokes that he uses when he
enters and exits her presence. She appears to merely "tolerate" her
father, as a child does when she says "stop" but really means, "this
is fun." When her father greets her, he always does the same thing. He
says, "here comes the hug" and hugs her. He then says, "you know
what's coming next---the kiss." Her father has a scratchy mustache and
both times when he went through this little joke routine with her, she
laughed in a way she did not do with anyone else. When her father is
ready to plant the kiss on her cheek, she immediately makes a face her
family calls the "lemon face." She puckers her lips, screws up her
whole face, and turns away from him, as if making ready for the
scratchy assault on her cheek that she knows is coming. She did the
exact same thing both times that her father initiated this little
routine joke between the two of them.

The interactions with her family and our appearance in her room
appeared to require some effort and exertion from Terri. From time to
time, she would close her eyes as if to rest. This happened primarily
when no one was paying particular attention to her, but we were
talking among ourselves. After a few minutes or when one of the
visitors approached her and started to talk directly to her again,
Terri would open her eyes and begin her grunting sounds again in
response to their conversations. Although I approached her, leaned
close and stroked her arms and spoke to her, she did not verbally
respond to me.

Terri's hands are curled up around little soft cylinders that help her
not to injure herself. I understand that these contractures are likely
very painful, although there was a time when Terri was receiving
simple motion therapy when her hands and arms relaxed and were no
longer as constricted. When the therapy was discontinued by order of
her guardian and the court, the contractures returned. These
contractures would apparently be avoidable if Terri were given the
simple range of motion therapy she previously received. It is very sad
to observe firsthand these conditions that make her life more
difficult, but that would be correctable with little effort.

When we were preparing to leave, the interactions with Terri changed.
First, she went through the joke routine with her father and the
"lemon face." When her niece said goodbye to her, Terri did not react.
Nor did she react to me or to Attorney Gibbs when we said our goodbyes
to her. When her sister went to her to say goodbye, Terri's
verbalizations changed dramatically. Instead of the happy grunting and
"uh uh" sounds she had been making throughout the visit, her
verbalizations at these goodbyes changed to a very low and different
sound that appeared to come from deep in her throat and was almost
like a growl. She first made the sound when her sister said goodbye
and then, amazingly to me, she made exactly the same sound when her
mother said goodbye to her. It seemed Terri was visibly upset that
they were leaving. She almost appeared to be trying to cling to them,
although this impression came only from her changed facial expression
and sounds, since her hands cannot move. It appeared like she did not
want to be alone and knew they were leaving. It was definitely
apparent in the short time I was there that her emotions changed—it
was apparent when she was happy and enjoying herself, when she was
amused, when she was resting from her exertion to communicate, and
when she was sad at her guests leaving. It was readily apparent and
surprising that her mood changed so often in a short 45-minute visit.

I was pleasantly surprised to observe Terri's purposeful and varied
behaviors with the various members of her family and with Attorney
Gibbs and myself. I never imagined Terri would be so active, curious,
and purposeful. She watched people intently, obviously was attempting
to communicate with each one in various ways and with various facial
expressions and sounds. She was definitely not in a coma, not even
close. This visit certainly shed more light for me on why the
Schindlers are fighting so hard to protect her, to get her medical
care and rehabilitative assistance, and to spend all they have to
protect her life.

I realize that Terri has good days and bad days. There are obviously
days when she does not interact with her family, as they had
previously told us. There are also apparently days when Terri is even
more interactive and responsive to them than she was on the day I
visited. Since this visit I am more convinced than ever that the
Schindlers are not just parents who refuse to let go of their
daughter. There really is a lot going on with their daughter and
potentially, it seemed obvious to me, Terri could improve even more
with appropriate care and 24 hour a day love that can only come from a
dedicated family. As I watched her, my foremost thought was that on
the next day, Christmas, Terri should not have been confined to her
small room in a hospice center, nice as that room was, but that she
should have been gathered around the Christmas dinner table enjoying
the holiday with her family.

On Sat, 19 Mar 2005 16:44:42 -0700 (MST), gordon brown
<gbrown@euclid.colorado.edu> wrote:
> After less than 24 hours away from my computer I returned to find nearly
> 60 messages from this list. I thought that one of the purposes of the rule
> of a limit of four postings per person per day was to prevent this sort of
> thing.
>
> Gordon Brown
> Department of Mathematics
> University of Colorado
> Boulder, CO 80309-0395
>
>

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