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 Poland.

Welcome back.

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 aging.

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 follow directions.

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.

Thank you.

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 Burt.

The meeting is adjourned.

(Whereupon, at 12:10 p.m., the meeting was concluded.)