FRIDAY, September 10, 2004
Session 7: Public Comments
CHAIRMAN KASS: We have one person who has asked
to speak in the public session, and if I'd ask Council members
simply to stay put, we'll have a public comment from Susan
MS. POLAND: Thank you.
I'm here again speaking just for myself.
In the last six months or so I haven't been here because
I've been taking care of my mother who has dementia, and I
find it appropriate to talk today about this.
First, I'd just like to say that Alzheimer's is not
synonymous with dementia, and dementia is not synonymous with
I'm sorry I've missed so many of the sessions earlier
because I think a lot of the stuff I may be saying might be repeating.
Let me start with a vignette. As you know, I work in bioethics
and have been in and around it since 1979, and I had prior experience
in law enforcement, giving Miranda which is like informed consent,
and having worked in IVF down in Norfolk.
And in May I was with my mother and brother and my sister who
were living in Portsmouth, Virginia, taking care of my mother
because my sister thought something was wrong and they had picked
her up around Christmas time and brought her down there.
We were sitting in the office in Virginia Beach of Tom Pellegrino,
the oldest son and head of neurology, and son of Ed Pellegrino
whom I also had met when I was down in Norfolk working. He was
being consulted because she had been diagnosed with having a frontal
temporal dementia, which is relatively rare. The statistics are
that if you reach 80, you have a one in two chance of getting
a dementia or a 39 percent, depending on what you read. Most
of the people who reach that age are women, which I have not heard
many gender issues regarding this discussion, but just so you
know, there is a lot of gender issues out there around this.
And if you do get dementia, probably 75 percent of those do
have Alzheimer's. The press and the public both think Alzheimer's
and dementia are the same thing, and they are not. You become
demented. It is a process where you have abnormal or absent,
i.e., reduced mental functioning which had existed previously.
It's a loss caused by disease or trauma, not by age. If it
was by age, we'd all be demented, and that's not the case.
So given the fact that we're sitting there, the question
with Dr. Pellegrino having been diagnosed with this frontal temporal
dementia or possibly vascular dementia because she was a heavy
smoker since the age of 16, I wanted a more pinpointed diagnosis.
So we were referred to Dr. Pellegrino.
And my brother and my sister, at this point they had put her
on Aricept for four weeks, and they were considering whether to
put her on Namenda, which had not been proven for this particular
dementia. The diagnosis was probably Pick's, but that could be
only diagnosed upon autopsy.
And my brother and my sister were saying no, no, no, no, no,
and Dr. Pellegrino was sitting there where he and I — well,
he has a medical background; I have a legal background. We both
see eye to eye pretty much on ethics, having been around that
for so long. So the philosopher-king with a caring family scenario
that you would probably hope for.
We had asked earlier if she goes on this, how are we going to
know that this is working. Is it subjective or objective?
And he said, "Good question. We don't know."
My mother said, yes, she felt better on this particular drug,
and I felt, yes, let's go ahead with an Namenda. My brother
and sister-in-law felt no. They were having problems with incontinence,
problems due to hallucinations because in this disease with the
frontal temporal lobe, it's all black on an MRI, and what
happens is the sense work. So the body is working. It is sending
messages up through the eyes that you're seeing light, but
the brain can't translate because it is broken off because
of pic bodies. That's the theory.
She also was having problems with her legs. This is another
issue of bioethics I have no heard you talk about, which is public
health issues. We didn't want her driving because she couldn't
control her legs, and therefore, I didn't want to hear about
her hitting a bunch of people and killing them like out in California
because she hit the wrong pedal or something.
And I understand that the DMVs do test for Alzheimer's,
and my mother will score 28, 29 or 30 on the mini mental states,
but she cannot hold thoughts in terms of execution. That is what
this whole area of the brain has destroyed, is her ability to
And so consequently it's a difference in memory, and the
public, I believe, doesn't understand memory. We all as we
age lose the ability to recall. We're all saying, "What's
his name? What's his face?" and all of that.
And with Alzheimer's you lose the ability of cognition.
You don't know who you are.
Just a couple of weeks ago I was up there with my mother, and
I asked her who's in this picture, and she said, "Oh,
this is Aunt So-and-so from the '40s," and she has no
problem with that. She cannot remember if you give her a new
microwave how to do three-step directions.
And so what I'm trying to say is when we were with Dr. Pellegrino
and we had this informed consent problem, it was one I hadn't
seen before in the reading or the writing, and since decision
making is so central to bioethics, it has to do sort of like advanced
directives. What do you do when the person can't remember
they gave consent. It's not that they're going in and
out of capacity, and it's not that they can't comprehend,
although that's an issue, too, but what happens when they
just can't simply remember?
Regarding the body and the person, in this case the neurologist
said, "This person in front of you is no longer your mother.
Her personality has been destroyed." So she still has a
mind. She still has a body, but no personality. Is that a person?
And then there's the whole genetics issue. We were looking
at donation, and there's three kinds of donation. There's
donation of the whole body and donation of the parts, of which
there are two: organs or brain. If you donate the brain, you
cannot donate organs and vice versa. If you donate organs, you
cannot donate the brain.
So we would laugh and say, "Ma, Dartmouth doesn't want
your body, but Harvard sure wants your brain."
So that was interesting because people say are you afraid about
getting this disease, and I said no because I know that the funding
at the federal level is going into genetics, and people who have
the funding are looking at this link, but we really don't
know what's causing this.
So basically my real complaint is that there's not enough
out there with education with the public and with the medical
profession or, as you said, the legal profession because even
as a lawyer — and I was a young lawyer at 35, but not 25
— and even then it wasn't until I went through this
that I understood what my co-workers who had people who were doing
elderly caregiving were giving up.
And we had considered, you know, would we have my mother live
with us, and the chances of that happening where I'm the primary
caregiver for our 14 year old daughter and in addition to that
the primary breadwinner. I wasn't going to give up our health
insurance because we don't have universal health insurance.
So it wasn't a question of just economic costs. It was a
question of costs for the whole family.
CHAIRMAN KASS: Thank you very much. Unless there's
any further comments, we should adjourn.
I think one has heard at various times during this meeting a
request for continued clarification of the questions under discussion.
Some people are more discontent with the lack of an absolute clear
definition than others, but I think we certainly as we go forward
would like to have these things more carefully defined.
And I would be very much interested in having oral or written
reflections from all of the people who are here, as well as the
people who are not here, to whom I will send a written invitation,
to supply such comments reflecting on this meeting and the things
that we've heard so that we can proceed appropriately.
Thank you all very much for coming. Thanks again, Professor
The meeting is adjourned.
(Whereupon, at 12:10 p.m., the meeting was