FRIDAY, September 10, 2004
Session 5: Aging and Care-Giving: The Ethics of Therapeutic Interventions
in Patients with Advanced Dementia
CHAIRMAN KASS: The title of this morning's
session is "Aging and Care-Giving: The Ethics of Therapeutic
Interventions in Patients with Advanced Dementia," and the
discussion will be built around a really quite remarkable paper
in my opinion written by Eric Cohen, whom I've invited to
join us at the table for this discussion.
When persons with dementia get sick, the caregiver's dilemma.
We move in this session from the questions of ethical attitudes
and dispositions to a particularly vexing set of concrete ethical
questions involving patients with advanced dementia, how vigorously
to intervene medically in the event of their supervening additional
illnesses or infirmities.
And Eric's paper has laid out — it's in sort of
two parts, the beginning a kind of analysis of this topic in terms
of questions of what are the moral boundaries within which such
decisions should occur; what are the goals that should guide the
caregiving decision-makers; what are the relevant particularities
that enter into such decisions; and then finally, because he felt
that it would be perhaps cowardly to have a kind of an analysis
without offering some kind of pointers or directions, he offered
toward the end his own provisional conclusions. And I think I
won't rehearse that. I trust the paper has been carefully
By way of introduction I want to say only a couple of things.
First of all, for the purposes of this discussion, I would like
to treat this in the spirit of Eric's paper as an ethical
question, not yet a policy question, a public policy question.
We treat this as the caregivers' dilemma partly because it's
the concrete point of departure, partly because as Gil admonished
us yesterday, it's unlikely that one is going to think terribly
well at the public policy level about these things if we can't
think through carefully enough the ethical dimensions of the
Second, there is a long tradition about the ethics of foregoing
lifesaving or life extending interventions once upon a time handled
by the distinction between ordinary versus extraordinary means
or obligatory versus optional treatment.
And the question for us is to what extent does that traditional
analysis still function adequately under the conditions which
were not envisioned by the development of that tradition, namely,
circumstances in which, as Joanne Lynn's paper pointed out,
for some people they are in the process of dying for a very, very
long time, and perhaps the choice is not to live or not, but to
choose amongst the various ways of living while dying or to choose
amongst the various ways of dying that such decisions necessarily
The third point, I think everybody is aware that this is an
extremely delicate and morally complicated problem not only because
it's poignant for the people in the circumstances, but because
I think we sense that there are Scylla and Charybdis confronting
us from the very start.
On the one hand, to treat dementia as by itself a criteria for
saying no to life saving interventions is to be in danger of defining
a category of persons not worthy of being kept alive, and the
Council at the last meeting afterwards had some experience with
a culture that came to the conclusion that there were such things
as life unworthy of life.
At the same time, on the other side, there is a kind of vitalism
which says whenever there is an effective means of interventions
intervene, and this would be a vitalism that could, in fact, degrade
and dehumanize all in the name of upholding human dignity and
And I think one sails in these waters at great peril, but it
seems to me terribly important that we face this question. If
we don't face it, it is certainly going to be faced by individuals
and by the community at large, and it begs for a kind of thoughtful
analysis of the sort that I think Eric has started us out on.
I've asked several people if they'd like to make comments,
and Rebecca Dresser has agreed to lead off.
PROF. DRESSER: Thank you, Leon.
I, too, thought this was an extremely impressive paper. I will
make three comments on it and then raise a couple of questions
about the problem of decision making in these patients.
It's tough for me not to talk about policy. So you'll
have to forgive me. The paper discusses the situation in which
there's a loving family or a proxy making decisions for patients,
and we have to remember that this does not exist for many patients
today, and in the future that will probably be a more common situation.
So in terms of thinking about how to decide for people with
dementia we have to factor in the situation where there is no
family intimate, and someone else will be deciding and how should
that be approached.
The paper tries to make a clear distinction between a legal
rule that would, say, forbid a certain kind of treatment for dementia
patients at a certain stage, and a failure to cover that treatment
by an insurance policy or a government Medicare policy.
And I agree there's a distinction, but I think in reality
so many people are dependent on and will be dependent on Medicare
that a government decision not to pay for something is going to
be equivalent to a denial of access to a certain kind of treatment
for a patient.
So I think there is a line, but I don't think it's as
a practical matter very bright.
And a third point is that in the discussion of why there might
be reservations about giving full effect to an individual's
past wishes about treatment, the paper doesn't mention another
consideration that I think is important, which is when you ask
in studies — when people are asked about whether they want
their advanced directives to be strictly followed — I need
some competition here — people say, "I want my family
and my doctors to have some leeway to override my advanced directives."
So another reason for not giving full weight to advanced directives
would be the judgment that many people actually want to give their
families and doctors some flexibility at the bedside. so that
would be consistent with an autonomy perspective on handling these
Now, a couple hard questions regarding this issue of how and
when to treat a supervening illness in a dementia patient. These
are both questions that courts have struggled with.
One is that when you're evaluating the benefits and burdens
of different medical approaches, including foregoing treatment,
is it appropriate to consider not just the burdens and benefits
of the treatment intervention itself? So, say, it's a feeding
tube, you know, the pain involved in putting that in or any restraints
that might be necessary if the patient is uncomfortable with the
But is it also appropriate to consider the kind of life that
a successful treatment will bring the patient? So this gets into
the quality of life consideration.
A couple of situations that I think present this in a compelling
way, these are taken from an article by Nicholas Rango that we
read for our April meeting. He talks about some patients with
severe multi-infarct dementia. For them the very activities of
daily living, such as bathing, add considerable pain and exhaustion.
It's often impossible to feed, move or lift such patients
without unintentionally tormenting them.
So that might be a case where you would say, well, the very
life that treatment could provide is certainly of questionable
benefit to the patient.
He also mentions people with advanced Alzheimer's where
the condition manifests itself in incorrigible acts of self-mutilation
or intractable states of paranoia and hallucinations. So that's
another hard case.
This second question is should this evaluation consider only
the benefits and burdens the patient herself can experience.
So that would involve pain, distress, disorientation, those sorts
of things, or may it also consider factors that the so-called
reasonable person would consider relevant?
So that a good example of that is, say, a patient in a persistent
vegetative state. Now, that patient is not suffering, and that
would be also advanced Alzheimer's at the very end stage.
That patient is not experiencing burdens as far as we know because
the patient is unconscious.
But the majority of people in this country, at least in surveys,
say that they find that a sufficiently undignified existence that
they would want their families to have leeway to forego treatment
in that situation.
So this notion of dignity that maybe the patient herself is
not experiencing should be taken into account, but then how far
would that go because many people would say that they find the
situation of, say, the person with moderate dementia as undignified.
Would this reasonable person notion of dignity be sufficient to
justify nontreatment if that's what the family wants in that
sort of a case?
So it's this difference between subjective burdens and burdens
that others in the society might believe in, but the patient herself
is not experiencing. Should both of those be taken into account?
If the latter is taken into the account, how far are we going
to go with that?
CHAIRMAN KASS: Dan Foster, do you want to enter at this
point? No. Okay. Thank you.
PROF. GEORGE: One who embraces a utilitarian or other
consequentialist approach to ethical decision making need not
favor euthanasia or its equivalent, though many utilitarians today
Someone who rejects consequentialism won't necessarily reject
euthanasia, though it's fair to say that most of the leading
opponents of euthanasia among moral philosophers and legal scholars
are also opponents of consequentialism and ethics. And by "consequentialism"
here I mean an approach to ethical decision making which recommends
as the correct decision the decision which will overall in the
long run promise to produce to the net best proportion of benefit
The key thing to note about this kind of approach to ethical
decision making in light of Eric's fine paper is that it
eliminates the distinction in the theory of human action that
is central to the classic tradition of medical ethics to which
Leon alluded in his opening comments, in which Eric's paper
is rooted, namely, the distinction between intending death whether
that death is one's own or someone else's death, and whether
one intends death as a means or as an end in itself, an end in
itself or a means to some other end. That's on the one side,
And then on the other side accepting death as a side effect
of an action whose object, that is to say, whose aim, goal, justifying
point, is something other than death. The good or the avoidance
of some evil, such as the avoidance of pain or the avoidance of
bankruptcy or something like that, some evil judged sufficiently
weighty to justify accepting death or the shortening of life.
Some classic examples are, one, a soldier who heroically jumps
on a grenade that's been rolled into the camp in a life sacrificing
effort to save his buddies.
Second, a patient suffering from a painful condition who takes
palliative drugs that he knows will result in his dying sooner
than he would otherwise.
And, third, the bombing of legitimate military targets despite
the foreseeable harm, perhaps including death, to some innocent
Well, if the distinction makes sense, it's because human
life has a kind of value that renders it impossible to weigh and
measure in line with the utilitarian or other consequentialist
calculus and which makes it wrong ever to say, again, to recall
Leon's opening remarks, that this life or that life constitutes
"lebensunwertes Leben," life unworthy of being alive.
But human life could be valuable in this sense, intrinsic sense,
only because we can't account for all we perceive in life
as valuable in instrumental terms. And, indeed, this belief in
the intrinsic value of human life is at the heart of the classic
tradition, but it's a belief that has been eyed by many people
today and not just by utilitarians.
Well, let me be a little more precise. What the non-utilitarian
deniers deny is that mere biological human life has intrinsic
value, and they ascribe to the contrary position the vitalism
that Leon has this morning criticized.
What does have intrinsic value according to this competing view
is not biological life in itself, but the life of a human being
in possession of at least a modicum of self-awareness and intellectual
and other mental functioning. As dementia erodes mental functioning,
eventually in some cases destroying even self-awareness in any
meaningful sense, the question arises for people who deny the
intrinsic value of biological life, do we have a life here with
value at all? Is the severely demented individual a person who
has any real interest in life or any real right to life?
And here there's, of course, a very big debate, a very accessible
piece of work that in these cases you don't have a person
with a right to life, as Ronald Dworkin's 1993 book called
Life's Dominion, which lays out a nonutilitarian case
for euthanasia. He argues, for example, might it be rather in
the interest of such a human being in this stage to be dead rather
than alive and whether or not death can be viewed as being in
his interest, may he be killed whether by act or omission for
the sake of the broader social interest.
Of course, for those who hold fast to the classic tradition,
these are the wrong questions. There's no class of human
beings who are not persons because every human life is intrinsically
valuable. Every human being, even the severely demented, has
an interest in and right to life and right and interest in being
Within the constraints of our resources, all must be cared for
with what Eric calls in the paper "loving prudence."
I think that does capture the thought of the tradition very much.
Yet this does not solve every question even in theory. Now,
let me raise some.
First of all, it's not always easy to distinguish between
intending death and accepting death as a side effect. Sure, there
are clear cases. The examples I cited a moment ago are clear
cases at least in the tradition's own terms, but some cases
simply aren't clear.
This is not always because factual uncertainties or ambiguities
attend the cases, though these are certainly capable of generating
exquisitely vexing dilemmas.
At the margins and the real problem, there is a certain fuzziness
in the criteria by which we distinguish intending from accepting
side effects, although I myself employ this distinction as best
I can in my own work. I have to concede that there are points
when I find it breaks down.
I can't give you the criteria with the kind of clarity that
would enable me to give a very hard and fast answer to a very
hard case. So that's number one.
Beyond this question of criteria, there is an issue about death
and what it is. Now, I have in mind here not the standard debate
about the definition of death, though that, of course, is in the
background. In the foreground is the question whether in certain
circumstances the omitting of treatment or of certain kinds of
treatment so that a patient is, quote, allowed to die constitutes
not an intending of death, but a declining to keep a patient in
the process of dying indefinitely suspended between life and death.
Is there, in fact, a state of affairs properly described as
the process of dying if it can somehow be possible to interrupt
that dying by intervention or interrupt death by intervention
so that the patient is dying, but is suspended in that dying?
Is the state of affairs described as being suspended between
life and death really distinguishable from a state of affairs
described simply as being alive, but being in very bad shape as
a result of, say, a severe dementia or some other conditions?
If so, then there may be a certain relevance in a very limited
set of circumstances, to be sure, to the ordinarily, in my view,
irrelevant distinction between acts and omissions. Perhaps by
omitting to intervene in these circumstances we are not intending
not that is to say willing death, but it's not clear to me
how we can know for sure.
A third matter is the question of the relevance of quality of
life considerations to the assessment of accepting death as a
side effect in cases such as severe dementia, what Rebecca raised
for us. It's important to note that the classic tradition
demands the application of moral norms even in cases in which
death is a side effect, and the norm against what the tradition
calls direct killing is, therefore, not in issue.
These norms, in general, do not exclude in principle choices
that embody a preference for a richer but shorter life to a longer
but poorer one, which is why in my judgment it's not accurate
or fair to attribute to the tradition the perspective Leon called
There is such a thing as vitalism. There have been people who
have embraced that, but I don't think it's fair to say
that the tradition is vitalistic that way precisely because it
does allow for choices that embody a preference for a richer but
shorter life to a longer but poorer one.
The broad sweep of ethics is concerned, according to this tradition,
not only with the death we die, but with the life we live, and
of course, with a connection between the two.
A brief word in concluding about the familiar distinction that
Leon did introduce a moment ago between ordinary and extraordinary
means of preserving life, familiar but in some ways obscure.
What does it mean to say that such-and-so means must be employed
because they are ordinary and others may be omitted because they
are extraordinary. The trouble with the terminology, in my judgment,
is that it virtually invites an inference that has to be wrong,
namely, that the moral obligation depends on how fancy or elaborate
or newfangled the technology is.
For people who joined me and Eric in affirming the classic tradition
of medical ethics, I think the key is to keep the focus on the
object of the act, and the question whether death is within or
beyond the scope of one's intention and not to try to solve
these problems in terms of these categories or ordinary and extraordinary.
Although the answer, alas, will not always be clear, at least
in that case I think we're going to be asking the right questions.
CHAIRMAN KASS: Thank you very much.
DR. GÓMEZ-LOBO: This is just a footnote to Robby's
wonderful exposition, I think. I'd like to suggest that we
try to keep very clear certain distinctions in the discussion.
For instance, I think it's very important to distinguish between
dignity, in the expression human dignity, from dignity as entailed
when we speak about undignified condition. I think they are two
radically different things that I mentioned by these expressions
because by dignity in the first case, we mean something intrinsic
to human beings which demands from us a certain kind of moral
And I would reaffirm the idea that a severely incapacitated
person, even a person in a vegetative state does retain that dignity.
I mean we have no reason to just dismiss that person because of
a certain incapacitation.
Now, undignified in the other sense has more to do precisely
with the impediments the person is suffering, and the confusion
there may be that someone might say, well, because this is undignified,
because the person needs certain kinds of care, et cetera, that
therefore, there is no dignity there.
I would not base, for instance, important moral decisions with
regard to that person on the fact that the person is in a hospital
room full of tubes, et cetera. People consider that to be undignified,
but it may be precisely the way to protect the dignity of that
person, that the person be intubated because the person needs
So I think it's very important to keep that distinction
clear. The other distinction which seems to me very important
is the different senses in which we employ the expression "quality
of life." Why? Because sometimes poor quality of life or
poor imagined prospect of quality of life has been invoked as
a reason for lethal intervention.
Now, quality of life may mean incapacitation in which case,
again, it may not justify certain interventions.
On the other hand, it is doubtless the case that there may be
a medical judgment on quality of life such that, for instance,
certain medical interventions may prove to be futile because the
condition of the patient is so weak, let's say, that to continue
to provide certain forms of treatment and even of care may be
in vain and, therefore, in moral terms be rightly considered extraordinary,
therefore, not required, not obligatory.
So that was just a couple of suggestions.
CHAIRMAN KASS: Thank you very much.
DR. CARSON: Obviously, you know, in the field of neurosurgery,
dealing with end of life issues is unfortunately a common occurrence,
and you know, we see a lot of people who are severely head injured
or who have terminal conditions emanating from the brain, and
you know, questions come up in terms of how much intervention
And you know, one thing that we look at is we never want to
torture people, and what is torture? It's keeping someone
who is suffering with no hope of recovery alive. That is torture,
and we have to be ever cognizant of that in these discussions
at the same time. If we ever see a ray of hope of recovery, you
know, we're going to pull out every stop possible.
So I think that has relevance in this discussion as well.
CHAIRMAN KASS: Gil.
PROF. MEILAENDER: I want to make one comment and then
ask a question to see if we can pursue it.
The comment is: this is not really a matter of kind of moral
theory, I don't believe, but it still seems to me something
to keep in mind always. With respect to at least some of the
sorts of patients that we're talking about here or some of
the sorts that Eric's paper takes up, I think it's important
to acknowledge in the conversation as we think about them that
their presence or being in their presence makes us very uneasy.
I mean, speaking for myself, I mean, I hold the theories which
would suggest that we should never aim at their death. We should
do whatever we can to benefit the life they have.
But there's a part of us, there's a part of me that
inevitably wishes they'd go away not because it's such
a problem, but because they're one of us. They show us our
future, and they make us very uneasy.
And it seems to me that that tendency, if you agree with me
that that's the case, that that suggests a tendency that we
need to guard against. One needs to be conscious of it all the
time and take it into account.
So that's the comment. In other words, with respect to
what Ben said, I mean, I'm sure there are circumstances in
which you could torture someone. On the other hand, one might
often want to think whether we're quite certain it's the
patient who's being tortured or us, and we know, in fact,
from studies that doctors aren't any better at dealing with
this phenomenon than the rest of us along the way.
So it's important to keep that in mind.
Then the question I wanted to pursue, and since we've got
Eric here, I hope we don't just have him sit there, but we
do allow him to speak somewhere along the way; the question I'd
like to pursue about the paper a little bit, it suggests at several
points, and I think it doesn't do more than suggest, it suggests
that what we might call the standard sort of categories that the
tradition has given us, namely, that you ought never aim at somebody's
death, but that there are circumstances in which you don't
have to do everything possible to keep someone alive, and we can
at least to some degree delimit those circumstances even though
they're fuzzy at the edges; it suggests that those categories
might be inadequate, and that's the word, I think, that is
used a couple of times in the paper, in the circumstances in which
we find ourselves.
But I didn't myself find anything in the paper other than
the simple assertion explaining to me what that inadequacy might
be. I have thought about those categories on a number of occasions,
and I don't myself think they're inadequate, as best I
can tell, although it's certainly true, as Robby said, it's
hard to know how to apply them sometimes, but that's always
true in moral prudence.
So could we maybe get Eric to say a little bit more about that
as a starter, just about in what sense one might suppose these
categories are inadequate?
It would help me to think about whether there's some reason
that they are.
CHAIRMAN KASS: Eric.
MR. COHEN: Well, I think Gil is very right in reminding
us that the experience of dementia both for the patient and for
the caregiver is not new. It's not simply a creature of our
new medical technologies that have kept people alive. People
have always lived long enough to live through dementia.
David Shenk's book describes this in his opening anecdotes,
but there are some things that are new. A capacity to intervene,
even to cure simple things like pneumonia, is somewhat novel,
and more profoundly looking ahead, the scale and the number of
people that are going to be living with dementia and the place
of this in family life is going to be much greater. It will touch
every family in some way.
Now, maybe that doesn't, and I suspect I'm inclined
to believe it doesn't actually finally change the ethical
analysis; maybe it is more a matter of our uneasiness becoming
greater precisely because the number of people who are going to
be living with dementia is going to be greater.
But I do think it's at least worth thinking about the question
whether when dementia becomes a normal part of family life and
when the trajectory of life and the relationship between the generations
has changed in a way for everyone, as opposed to this being a
kind of rarity where people in the past might have lived to 80
or 90 and suffered decades of demential maybe because they had
genes good enough to get them through heart disease or not to
have it at all as opposed to Lipitor to keep them going; is there
something different that we're facing?
Now, I suspect upon hard reflection that the categories will
not prove inadequate, but that said, the challenge of living the
categories as a society and choosing the good, acting in a loving
and prudent way will be harder.
So maybe simply suggesting their potential inadequacy is a way
to actually recover their significance for us even when it seems
like it's going to be a very hard road ahead because there
will be so many people living with dementia.
CHAIRMAN KASS: Can we stay on this question that Gil
has raised? Because I think there are other people that want
to get on.
Peter, on the same question?
DR. LAWLER: The big distinction of your paper is what
has to be done as a matter of personal ethics and what has to
be done as a matter of law. So Bill Clinton as a matter of personal
ethics should have had the bypass operation. As a matter of law,
he didn't have to.
Just like if I have pneumonia, I should take the antibiotics,
but as a matter of law in a free country, I don't have to.
But here you have a situation where people are choosing for
others, and so the matter of law becomes much more important.
So I'm a little troubled by the idea that society might not
pay for treatment for people with moderate or advanced Alzheimer's,
although people who want to could choose this, pay for it themselves
in loving prudence.
And isn't it true that the only way to resolve this problem
and to make sure these decisions aren't made according to
some cost benefit analysis is for society, that abstraction, to
provide for everyone a situation where decisions are made according
to loving prudence? And how do we do this with a large number
of people who are going to be dying in this way or have this sort
of situation who don't have someone available to make a choice
according to loving prudence?
MR. COHEN: Well, I think it's an important point.
I think it in a way connects to a fundamental point in question
that Robby raised, which is clarifying the distinction between
intending death and accepting death, and I think a different way
to ask that same question is: what human goods give us reason
to legitimately accept death both as individuals and in the personal
situation, and in that abstraction, society?
Now, there are some ones that seem kind of obvious, a sort of
heroic diving on the grenade to save other people, although we
probably as a society wouldn't tolerate someone — and
this is an example of medical ethics — a perfectly healthy
person who said, "I want to give all my organs away because
that will help other people."
So the puzzling question, I think, in both the personal kind
of existential case where families or even doctors or nurses or
whoever is left to be the loving proxy has to make these caregiving
decisions. I think the first question always has to be what is
best care for this person, and I would say the best care is actually
slightly different than best interest. It denotes the relational
dimension of this as opposed to simply trying to discern the patient
and what would be best for them.
But I think the puzzle is to try to see what is best care demand
and, therefore, what other goods can legitimately be taken into
account, and I think that's going to be a puzzling question.
Society can only provide what society can provide, and it can't
provide a perfect, ideal situation for everybody. That's
a kind of tragic limitation inherent in being human and inherent
in living together in society, it seems to me.
But the question is: how do we set certain kinds of limits
if society has at some point forced us on certain kinds of limits,
and I think that's a puzzling question which you put in a
CHAIRMAN KASS: Still on this very same point, Gil, did
you want to come back?
PROF. MEILAENDER: If it's okay.
CHAIRMAN KASS: Please.
PROF. MEILAENDER: I think I agree with the answer Eric
just gave. I think we need to fill it out a little bit though
just in the terms of the paper itself.
The meaning of best care in terms of the way the paper said
it is always to find within that boundary, the boundary being
you never intentionally aim to bring about someone's death,
and what that means is that in terms of all of these goods that
you're talking about if you say to me, "And why don't
you want to treat your aged father here?" or something like
that, if my answer is to you, "So that he'll die,"
there's at least a prima facie case for thinking I've
transgressed the boundary, and we're not talking about care
in that sense any longer, even though I might be a very caring
So I think the language of care in terms of the way the paper
sorts it out does not correspond to the way we talk about being
caring always, and one needs to see that.
CHAIRMAN KASS: Well, look. I want to press now from
the other side because Eric seems to have retreated from the way
in which the paper leaves a kind of dilemma for us. On the point
most at issue in this discussion, namely on the question of whether
dementia matters in deciding how to care for persons with dementia,
we, meaning he is uncertain.
I'm reading from the penultimate paragraph. "In short,
should we regard a person who is physically dependent on the activities
of life for the activities of life differently if they are also
mentally unaware? The presence of the body is too real to deny
the presence of the person, but the loss of the soul, the memory,
and the possibility of mutual recognition, this is too real to
deny the loss of something profound about the demented self.
Whether this loss means the person is more ready to die or whether
it means that the caregiver has a special obligation to care,
an obligation to dance both parts of the dance, we are torn."
Now, that seems to suggest that there's a real question
about whether the presence of dementia is or is not relevant to
thinking about the choice before us. Now, I think that the attempt
to force this question into are you choosing death or not, as
Robby has indicated, is in a way a natural temptation, but I'm
not sure that it is phenomenologicly correct to describe that
that's the choice that's being made.
PROF. GEORGE: If I could just come in briefly to interrupt
you on that, the way I was trying to conceptualize the matter
was to just assume, because I think it's a very reasonable
assumption in many cases, that we've gotten past the question
of whether we're intending death or accepting death here.
CHAIRMAN KASS: Right.
PROF. GEORGE: And that the real issue that becomes interesting
now is, okay, we now need to focus on what are the norms that
apply in the case of accepting bad side effects, and those are
norms that have been thought about, but have to be thought about
more all the time when it comes to circumstances where you're
not intending the deaths of noncombatants, but you have to consider
whether this or that action which is going to result in deaths
and injuries to a lot of noncombatants are fair to them.
CHAIRMAN KASS: But look. I do think that maybe I'm
wrong in thinking that the circumstance before us is one for which
the tradition hasn't really, you know, come to grips with
those examples I'm not sure hold. It does seem to me that
with the kind of knowledge that we have about the trajectory of,
let's say, advanced Alzheimer's, that it might be proper
to describe the decision to intervene or not as a decision about
either how to live while being in the process of dying or which
kind of path to death one would prefer.
And Eric gives us in the middle of the paper an example of a
person in the early stages of Alzheimer's who makes a choice
to live this way rather than that way and forego even at an early
stage a relatively unburdensome intervention, namely, antibiotics,
and he raises the question in that case is this person somehow
morally obtuse or culpable, or whether one could say this is not
a choice. At least he raises the question: is that a choice
to die or is that a choice not to die in this way, but to say
if it be now, let it be now?
Now, I don't want to try to settle the moral question, but
it seems to me we should try without the intervention of theory
to try to get the feel of what the concrete human situation is
and the kinds of choices that are there. It's not the question
of if you forego a certain kind of procedure at, say, an early
stage of life that you are — I'm sort of second guessing
myself in midstream.
It looks as if at an early stage of life the decision not to
treat a pneumonia when one is in perfectly good health or seems
to be, you could argue that that's sort of close to a decision
in favor of death.
But it's not clear to me that the decision to forego certain
kinds of lifesaving interventions for oneself when one is already
on the course to die .- I mean, I'm not sure that if I refuse
kidney dialysis or refuse some kind of cancer surgery in the midst
of my moderate Alzheimer's that I'm somehow opting, that
I'm somehow electing to die, and that this is the same as
a choice of suicide.
PROF. GEORGE: Well, at the risk of intruding theory
into the problem, I guess at this point without myself trying
to resolve the problem in the case that Eric put before us, I
guess I'm just saying we should try to keep clear about whether
we're trying to figure out whether a particular case falls
on this side or that side of the intending accepting side effects
divide and that's the appropriate way to analyze this problem,
or whether this very same problem, this very same set of facts
is properly analyzed not in view of that distinction, but in light
of whatever the norms are that apply when we're in the realm
of accepting side effects.
And that's not going to be as clear cut. That will very,
very frequently not be as clear cut a proposition.
I think there's a real question. It might not be your question.
It might not be the question you're putting before us now,
although I thought it was, but even if it's not the question
that you're putting before us now, I think there is a very
real question. I tried to highlight it in one of my three problem
areas, and Rebecca highlighted it, too.
It's a very real question about whether the fact that the
person is severely demented should bear and how it should bear
on the question whether it's okay to accept death even as
a side effect, albeit as a side effect, in these circumstances.
Because the life the person is going to lead is this kind of impoverished
DR. KRAUTHAMMER: I think the real question is whether
dementia creates a special case. We're going to have rules
about how you deal with people in the process of death. How much
do you assist it? How much do you resist it?
The question here is is it different in the case of dementia.
So we have a separate set of questions.
I think the answer is yes. I think intuitively and empirically
if you ask anybody who practices, anybody who has had a parent
in these conditions, the answer obviously is yes, and I think
there might be some wisdom in trying to understand why most people
decide, yes, it is relevant, and it makes you more lenient in
I just want to make one point in answer to what you said, Leon,
about the person in early dementia who might decide not to treat
a pneumonia. Are you merely aiding the process of death or are
you choosing death or choosing, as you say, to control or change
the circumstances under which it happens?
Of course he's choosing death. I think it's an obfuscation
to talk about the process of dying. There is a very small number
of cases in which people are actually in the process of dying.
Otherwise all of us are in the process of dying. Dementia doesn't
put you in the process of dying. It might slightly accelerate
it, but you could have 20 years of dementia. So in what sense
is that a terminal illness, except that life is a terminal illness.
So, I mean, it's a way to avoid the question. I mean, if
you have a 20 year old standing on a bridge, he can also argue
that we're going to die anyway. I want to control the circumstances
of my death. So I'm not sure it really helps us to talk about
the process of dying. It creates distinctions which I think are
unimportant, except in a very small number of cases in which people
actually are within hours or days of the massive organ failure.
the question is: do you want to accelerate death or choose it
instantly or not?
We ought to face it directly and not hide beside, well, we're
in the process of dying, and that's a way of fudging the issue.
If you have a person in the early stages of dementia who forgoes
pneumonia treatment, obviously he's saying, "I want to
die." The question ought to be: ought that be allowed or
CHAIRMAN KASS: Let others get in. I'll hold.
DR. McHUGH: I do want to get in this discussion, but
perhaps at several levels. The main point, of course, that we're
trying to do here as a council is to decide whether the process
of thought in bioethics are really a help to doctors and patients
who are dealing with these things at this time, and I want to
bring us back to that kind of situation, that doctors are, like
me and Ben and Dan, are in a lot of times in life.
I suppose I might be the only one in this group who has literally
pulled the plug. I am also probably the only one in the group
who has controverted an advanced directive and put a person on
life support things that she had explicitly asked me not to do.
I'm probably the only person who has voted at one time for
DNR orders and then decided in his department that he wouldn't
allow DNR orders to be carried out, and also probably the only
person who has opposed the patient that wanted to do just what
you said, not had antibiotics, and persuaded her to take the antibiotics
when she had an early dementia.
How did all of those things happen to one person? Well, they
happened in part out of the developmental process that goes into
building doctors in the way Dan and Ben and I have been built
from the beginning.
At first, when I was a person beginning in an internship and
all, I wondered why they were making me work so damned hard.
You know, I was up all night and I was tired and all of that,
and people kept saying, "Well, you know, you've got to
learn what it's like to really be there with the patients,
and you've got to be with them all of the time."
And also it was early on in my life when I did pull a plug on
somebody who had a total brain destruction, but then afterwards
I realized in that situation with that family, that we didn't
have enough time together to understand and with the person who
I changed the advanced directive policy, it worked out well in
the long run because, although she had asked me not to put her
on respiratory support, I was in midst of a discussion with her
when she had COPD, this obstructive pulmonary disorder, and I
was taking care of her for other things. She suddenly began to
slip away, and I just couldn't let her. I mean, the tide
was carrying her out, and I couldn't let her go. I just had
to grab her. It was just, you know, natural that you brought
By the way, it worked out okay because we got her on the respiratory
machine and week or two later we were able to get her off, and
then she had about three more weeks in which her family could
come from around the country and see her, and we talked about
how that happened.
Listen. I felt bad about all of these situations. DNR orders,
you know, it happened in theory in the medical board of the Johns
Hopkins. Shouldn't we have these DNR orders?
And I said, "Oh, yes." I was head of the Medical
Board at the time.
Then I began to realize that these DNR orders were fundamentally
leading to the neglect of the patients. The residents would come
onto the ward and they would say, "Well, who has a DNR order?"
And these people. "Oh, we don't have to worry about
them," and then the patients wouldn't get good nursing
and wouldn't get good care and wouldn't get—
So it really comes back to this idea that Peter brought up.
I want medical ethics if it's going to do anything new in
bioethics to really help us develop something more than simply
the intelligence and skill of doctors to their character and their
understanding of situations, and I'm not sure that we're
getting to that point very easily if we abstract ourselves from
the personal experience of carrying patients along where I want
to have available to me from the society all of the tools that
I and the family and my understanding of this situation feels
are appropriate at this time.
That means not only that I'm thinking about life and death
decisions. I'm also thinking about the psychological states
from which these decisions are developing, and often the psychological
states are the very psychological states in this situation that
I'm dealing with in other situations where death is not at
That woman whom I put on antibiotics, who had early Alzheimer's
disease and didn't want it, and had very rational reasons
for saying, "Paul, you know what it's going to be like,
and I read your book," but she had a very clear depressive
disorder that goes along with the conditions that she was suffering
from, and I persuaded her to, first of all, take the antidepressants,
that we could hold off a little bit on the antibiotics, and persuaded
her to see that her decision was being made in this combination
of problems of the dementia, the depression, and this other infectious
I want a society that says we need doctors in this situation
who have matured over time, who have listened to the philosophical
side, who have listened to the scientific side, but ultimately
in the art of doctoring express the particularities of this situation
and need to have for their power the right to give these treatments
as they occur or withdraw them with the understanding of the family
In the long run we're going to have to trust that we are
building a profession in doctoring that is able to manage these
matters and that they are informed by the kinds of things that
go into these decisions from philosophers, from scientists, but
very much from personal experience.
And so what does this come down to? In the long run I'm
against a lot of rules that become laws because bureaucrats get
into this situation. I want this to be a decision between me,
the patient, and the family that they're in, and I don't
want somebody else to be saying no or yes. I've seen that
in so many other ways, and they don't belong there, and we
ethicists ought to be talking about that side of it.
CHAIRMAN KASS: Mary Ann, go ahead.
PROF. GLENDON: Just a question for Paul.
You say you hope and trust that we're building a profession
of doctoring that will be able to attend to these new challenges,
and it would be, I think, really important and interesting for
us to know whether medical education as it exists right now is
preparing itself for this new situation, whether existing medical
education is up to the challenges that are certainly going to
DR. McHUGH: One never knows about that about anything,
I suppose, in relationship to a profession, even the legal profession.
Is it up to dealing with the problems of autonomy and the like
that is occurring now in our country?
But let me just tell you I am a member of an educational program.
Ben is a member of education. Dan is a member of an education
program. I think we are all in our various ways talking the forming
of character as well as the development of skill, and in that
process of talking about what character is, we oppose certain
policies and explain them in relationship to what we expect doctors
to be able to do in a sense in the front line.
I think that in the process of real education it occurs in medicine
as it does in other professions in the front line event, in the
laboratory, at the bedside, and that's where I think we have
wonderful teachers that are informing medical education at the
time. I do.
CHAIRMAN KASS: Gil.
PROF. MEILAENDER: Yes, I want to come back to some of
the questions you were raising, Leon, to make just a couple of
One, it suddenly occurred to me this actually goes back to a
slight disagreement we had and I don't even remember what
the issue was, an earlier occasion. You had said before if we
could just kind of start with the experience and bracket theory.
I don't want to do that. I actually don't want to bracket
rules entirely either, Paul, although I agree with you that there's
no substitute for wise doctors thinking carefully.
But I want theory to be there from the start just in the very
simple sense, in the sense of the boundary that Eric's paper
established related to the very first thing I said because I think
it protects us against certain impulses that are just very near
at hand and natural for all of us in some ways.
And so in that minimal sense, I least, I don't want to eliminate
theory, but now to the larger question you raised.
The first extended Christian discussion of suicide comes in
Book 1 of the City of God, and St. Augustine in his characteristic
way takes up all sorts of things, and he discusses whether, in
fact, given the fact that he grants at least that one might be
baptized and then fall away from the faith and that that would
be a terrible thing to have happen; he asked why we shouldn't
just baptize people and then dispatch them to heaven immediately
before they have a chance to fall away.
And Augustine, as I say, in his typical way he kind of thinks
about this and so forth, and concludes that, well, you can't
do that because you have to live out the course of this temporal
life. Nonetheless, you can't just jump ahead, in a sense.
You can't seize the occasion to get there.
And I think that in a way that relates to the question you were
raising. I mean, I think Charles is right to say that there's
a certain sense in which you could say we're just, I mean,
dying from the time we're born. Actually that's another
thing Augustine says.
Even not going that far, you can be terminally ill and live
for a very long time in the sense that you can have something
that your physician can say, you know, this will kill you in 36
months if a truck doesn't run over you in the meantime.
I mean, I think that's the kind of circumstance you're
raising, and what we need to think about is what it is that we're
doing, what kind of an action we're undertaking if I say,
well, I'll seize the occasion that has presented itself with
some supervening illness to die, and it's precisely with that
kind of question in mind that I thought that nothing in Eric's
good paper demonstrated that the standard categories didn't
That is to say there are reasons why I might not treat, but
they have to be reasons that don't transgress the boundary.
They have to be reasons that have something to do with the fact
that this would just be too burdensome a treatment, you know,
and I'd rather forego the burdens of it, something like that,
but not just seizing the occasion to die.
And it seems to me that's the kind of issue that needs sorting
out here somehow.
CHAIRMAN KASS: Well, let me come back. Would you like
to go first?
Let me respond to Gil. I'm not sure I can adequately respond
to the way Charles put it, but part of the difficulty, I think,
with the categories, there is a traditional argument. You've
made it recently again strongly that there are in a way two grounds
for foregoing life sustaining treatment. The treatment itself
has to be too burdensome or it has to be inefficacious.
We're here talking about interventions that are presumably
efficacious, else they wouldn't be recommended. So that particular
And the doctrine of burden is one that Rebecca's comment
actually invited us to lift up to view.
You, I think, take a very narrow view of what the burden is,
namely, well, open heart surgery or coronary bypass surgery in
an 85 year old person with advanced dementia or with terminal
cancer, even if it could produce a few extra months of life, would
seem to be a great burden.
But your way of thinking about it doesn't regard the way
of life for which you were rescuing such a person as itself burdensome.
That doctrine doesn't embrace that particular view. And I
think there's good reason for thinking in those terms because
the alternative seems to say, "I turn my back on that kind
of a life. Therefore, I am electing better to be dead than to
live in that way, and that I think is the way Charles heard what
I had to say.
But it does seem to me that with various kinds of interventions
we are very often choosing which way we want to live the rest
of our lives as we are on our path toward death. I don't
mean in the specific sense in the immediate process of dying.
If my physician tells me — and I have a strong family
history of Alzheimer's disease — and the tells me, "Leon,
get your cholesterol down," and I'm telling him, "You
know what you're doing? If you have your way with me, you're
going to save me for 15 years of a miserable disease."
Now, my physician finally persuaded me, especially when it turned
out that the drug actually is alleged to have certain kinds of
minimal effects in retarding the possibility of vascular contributions
to dementia and the like, but we're making these kinds of
choices. We are in a way making choices about the way we are
going to be living.
And I'm not sure. I'm not sure that the intuition that
a condition of advanced dementia doesn't somehow enter into
a decision about which way we choose to live out the rest of our
I'm not sure I'm doing this precisely enough, and I'm
open to complaint, but I think the intuition that we have is not
simply that this is disgusting or repulsive, but that these are
not simply choices to die now, but choices to live this way rather
than that end. If the time be now, let it be now, but we're
not electing that exactly.
PROF. MEILAENDER: If I may say just a word to that,
I mean, in that formulation I do not disagree at all with the
formulation. Now, how we sort it out is important, but just think
about a couple of things.
If you say to me, "I want to let my cholesterol ride as
high as possible so that I'll die pretty soon," then
I'd kind of like as your friend to talk with you about that,
whether that's the kind of intention you should form.
If you say, "I want to let my cholesterol ride high because
I would rather live five years with french fries than 15 without,"
I've got no quarrel with that. I mean, people live in risky
ways all the time, and it would be foolish to try to eliminate
Now, of course, we can't translate that distinction into
law. I understand that. We're speaking simply about kind
of what's morally wise, but one kind of meaning you might
give to the formulation would worry me in a sense, and I'd
like to talk about it. The other would seem to me just perfectly
appropriate and nothing wrong with that at all.
Now, to translate it into the language of burden, I jotted down
here in your formulation you said, you know, a way of life as
itself burdensome, and I mean, I understand the formulation, but
if the idea behind the position that Eric sketched with the boundary
in place and then with all sorts of latitude within the boundary
for different people to make different decisions, if the idea
is that you're not supposed to just reject life, but there's
nothing wrong with rejecting burdens of treatment and choosing
a way of life that's shorter rather than longer, then if you
say the burden in this case is the way of life I'm going to
have, what exactly is it that you're rejecting?
That's the problem.
PROF. GEORGE: Leon, can I come in just to ask one question
quickly? Because I think it will bring us right to the point.
Gil, is it okay if my choice to go ahead and eat the french
fries is made in view of the fact that I'm looking at 15
years of dementia, if I've got these additional 15 years,
where although I love french fries, if I were looking at 15 healthy
years rather than 15 demented years I'd forego the french
If that's Leon's question, if it's that really,
then I think the tradition can handle it, but is that it?
PROF. MEILAENDER: Well, that's a twist on it I hadn't
been thinking about, but presumably you shouldn't eat french
fries just so that you'll die.
PROF. GEORGE: that's not the question here. No,
that's not the question. The question is this. Look. I
love french fries, but if my doctor said, you know, "You've
got 15 healthy years ahead of you if you don't eat french
fries," all right, I'll give them up.
But the doctor didn't say that. The doctor said, "Look.
If you give up french fries, you can live 15 more years, but most
of those years will be in dementia," now, it seems to me
that you wouldn't be violating anything in traditional norms
or traditional ethics if you said, "Well, in view of that,
I mean, I'd rather eat the french fries not because I'm
trying to get dead, but because I prefer the life with french
fries, even though shorter, to a longer life without french fries
in this demented state."
PROF. MEILAENDER: Well, I take it that I
agree with that.
CHAIRMAN KASS: I have Dan, Peter, Michael, Eric. Do
you want to accumulate?
Let's give the author privilege and then we'll continue.
MR. COHEN: It seems, Leon, what you're trying to
do is to ask a somewhat different version of Robby's question.
Robby wants to say are we intending death or are we accepting
death with a view to other goods.
The question as it has been reframed is: am I choosing a life
that's good by not taking the antibiotic or am I living a
life that is morally obtuse?
And it seems if you're going to make the case that you're
choosing a life that's good by giving up the antibiotics,
you've got to, in the concrete case and in the particulars
of it, give the reasons why that's a good life. Is it because
not being treated is a way to be a true blessing to your children?
Yes, it's good for children to learn the lessons of care and
to learn how to live well with unchosen obligations, but that's
not the only good.
There are other kinds of human flourishing that are at stake
here, and we'd be blind to the facts that some of those things
may be compromised, given the road ahead that you can foresee.
And so if death has chosen you by giving you pneumonia at this
point, your choosing to live a life that is noble till the end
as opposed to choosing death is the issue that you're choosing
to preserve a certain kind of relationship between parents and
children; that something fundamental would be compromised if the
adult child is changing the diapers of the demented parent. Is
that what's at issue?
And that your choices for a life that preserves and upholds
and ennobles a certain kind of relationship between parents and
children, even if it means living that way till the very end,
is that what you're choosing is a life of a certain character;
that the prospect of losing self-command completely and for a
humble person to become demented and a demanding person in the
nursing home or for a modest person to make sexual advances or
something in the nursing home because it's now beyond your
control, and what you're choosing is a life of character even
to the very end, I think one can make that case, but then those
reasons and arguments can be examined and challenged.
And it seems to me that what looks like nobility may actually
be a kind of cowardice, and what looks like trying to be a blessing
to the children may actually burden the children in ways that
you can't fully foresee.
And so I think dementia does matter, though I think it's
often hard to articulate exactly why and why it's different
from other disabilities that people endure through life. And
I think perhaps the nobility of not being treated for the sake
of others or for the sake of a certain kind of life, my intuition
is that that claim perhaps increases as the stage if dementia
gets later, but I think that's hard to articulate, and I think
the challenge that Gil and Robby and others would put to us is
that we need to examine closely the reasons that you would give
for saying that this life is good rather than its opposite.
CHAIRMAN KASS: Dan, Peter and Michael.
DR. FOSTER: Well, let me just make a couple of unrelated
comments to things that have been said.
First, current practice in medicine. The duties of a physician
have traditionally been defined as three. I think I may have
said this here before. I don't know, but it won't hurt
to hear it again. I've added one.
I always say that the first duty of a physician is to be competent.
I don't care how kind and loving you are. If you're not
competent you're unethical. So I add that on.
But the three traditional duties, as you will recall, for the
physician are, one, to prevent premature death and to cure disease
when that is possible. Note the term "premature."
Now, how one defines "premature" varies, but it's
to prevent premature death and to cure disease when that's
Second, it's to alleviate symptoms when cure is not possible.
And, third, it is to comfort always. This is the priestly function
of the physician, the beneficent function of the physician.
And those rules, in my observation, are pretty common sense.
I think Aquinas, you know, once said that wisdom was what could
be commonly known. And what one sees — and I can only speak
to my hospital. I can't speak to Johns Hopkins, but I suspect
it's the same, which is that most of the time physicians,
including myself, err, if they err, on the side of treatment and
not withdrawal of treatment.
And that's the case with people who have dementia and come
in from the nursing home, I mean, and particularly with the young
people. I'll come back to Mary Ann's question about that.
If somebody has a urinary tract infection, which is the most common
thing they do, we tend to treat it with antibiotics and send them
home, send them back to the nursing home.
So I would say that in my experience oftentimes the error is
on treating when one might not have. That might not be the best
thing for the patient, but that's what we do.
The question that Paul raised about the young people in medicine,
my view is that they hold to a really rather astonishing way,
both to the need for competence, but also for the need for compassion.
One of the paradoxes is the fact that medicine has become not
so lucrative these days. In fact, many physicians, (neurosurgeons,
for example, Ben) can't practice because of the malpractice,
you know, and we just lost three because the rates were $300,000
The income of physicians in general has steadily gone down because
of the cost of things, and the paradoxical consequence of that
is that people who are in medicine are not there primarily for
the rewards which are monetary, and therefore, more interested
in the rewards for which no payment could be given in terms of
gratitude and response and so forth.
So I would say that there are always pirates in any system.
There are pirates in any system that disgrace it, but I'm
very optimistic about the young people and find more and more
their emphasis on the great things that make it a noble profession.
Now, that may change.
The third thing I want to say just very quickly is that there
is a sense in the discussion today and maybe even in Eric's
paper a little bit that in some sense death is always a horrible
thing, and that what we have to fight above everything else is
And I think that's wrong. We don't talk too much about
religious expressions here, but it depends on what you think is
the consequence of death. I mean, all of us fear death, but whether
you think it's the most awful thing in the world and, therefore,
we must preserve life under any circumstance, even as I said yesterday
somebody who is like a mausoleum, that there's nothing there
except to observe the living corpse. I mean, that's the worst
It's kind of interesting. I mean, I don't want to bring
too much into religion, but just to illustrate, the greatest teacher
in the Christian faith was Paul the Apostle, and you know, he
at one point says when he's under great distress, he says,
"I don't know what to do. Really I'd rather die
and go to be with God, but I'm going to try to stay here to
try to help you through this crisis," you see.
I mean, so here one would say that in its highest levels is
a very ethical religion. A person says, "I'm healthy,
but I'd rather go," you know.
And conversely, I think I quoted Prakash Desai one time. I
spent a long time as a trustee of the Park Ridge Institute and
hung around with people like Richard McCormick and Karen LeBacqz
and these ethicists and so forth, and we used to talk all the
time about end of life decisions. This was the day before the
courts had decided that you could turn off things.
And we were arguing about this. We were sort of taking the
view that, you know, death really should be fought, Prakash says
— I know I've said this at some meeting somewhere here
— he said, "You Westerners have it all wrong. Death
is not the opposite of life. It is the opposite of birth."
"Death is not the opposite of life," he said. "It
is the opposite of birth." It's a natural thing, and
so to elevate this as the greatest enemy seems to me to be a wrong
way to look at it, and that we ought to accept death as being
And then if you have a religious faith, that may elevate it.
I remember taking care of the mother of one of our faculty members
who was the House Officef at the time. I carried her through
— I think I may have told this, too — I think seven
or eight years with breast cancer, and so in the end there was
just nothing left. I mean everything was gone, and she was in
the intensive care unit, her family and everybody else. I said,
"I'm going to remove the respirator from her."
If I told this, forgive me. I can't remember what I said,
but when I told her, I said, "Jackie, we're going to
turn this off. We're just going to put you on oxygen here."
And she had been begging me day after day after day, perfectly
alert, day after day, and when I did, she looked at me with these
bright blue eyes. They never changed throughout this death struggle.
They never changed, and she winked at me.
I mean, I've taken her off the respirator, and she winks
at me. Now, she was a woman of strong faith, and I'm sure
she was saying, "So long. See you later," you know,
I mean in the tradition, but we need to get away from that.
And the final thing, I want to come back to something Peter
said a little bit earlier about law. Even in very sophisticated
countries you're going to face the issue — developed
countries — you're going to face the issue of resources.
As Eric said, we're going to have to make decisions.
You remember that the United Kingdom made two decisions early
on. They made a decision early on that they would not dialyze
patients with renal failure, whereas Medicare did this here in
this country, and they doomed 3,000 to 3,500 patients a year,
young and old, to death because they said, "We can't
And if you're rich enough, you could go to the United States
and so forth, but they did that. And they also, you remember,
put on at 65 — made it against the law to resuscitate somebody,
and you remember on the card it was written "NTBR,"
not to be resuscitated when you came into the hospital at 65.
Remember the late Malcolm Baldridge said it was quite sobering
when he got his 65 year old card to see NTBR. He didn't know
what it meant, and he asked his doctor what it meant. "Not
to be resuscitated."
And he says, "Well, that's quite sobering to the mind,
you know, that you can't do that."
So there are rules that are going to probably have to be done,
but this was done only — this was not in a great thing like
dementia. It was just for an economic savings that wasn't
And finally, we need to be cautious as everybody said about
what's going to hold and what recommendations we make for
the future in terms of the Alzheimer's problem, for example.
Science is really moving, moving on this. I mean, I think that
we may be able to not prevent multi-infarct dementia, the dementia
of aging and the vascular disease, but you may have been a recent
paper in Science in which the idea was that you could immunize
against the — remember as you get Alzheimer's, you have
this little 4A2 amino acid thing called "the alpha,"
you know, the amyloid beta peptide. You know, that's what
gives you the plaques, and then the second thing is you get these,
you know, neurofibrulatory tangles. You remember when we had
that talk before, but you get that.
Well, it turns out that a trial, a human trial of immunization
was stopped because of the possibility that patients might get
worse, but on the other hand, in animals it has been clear that
if you immunize against the amyloid beta peptide, that the plaques
disappear. And if you get it early, that prevents the tangles
There were four people who died who had participated in the
initial trial with immunization from things that were not related
to Alzheimer's disease, and at autopsy, it was fascinating.
They had been vaccinated against the amyloid beta peptide, and
at autopsies their brains, they had proven Alzheimer's, I
mean, so far as you could prove. Their brain had no amyloid plaques.
They had their neurofibrulatory tangles because it didn't
have them before, but what that says is that at least in four
humans it was reproduced.
The scientific paper about rodents and the removal of this,
and so we may not — I mean, the one thing that's I think
steadily good is science, and I think that we may be able to actually
prevent this one of these days.
And so the dementia part of this is important now, but we might
do better on it. In other words, there's an optimism here
on my part and many scientists that that's good.
So we had commented on three or four of those things, and I
just wanted to make those points as we go ahead.
CHAIRMAN KASS: Thank you.
Peter and Michael, and then we'll break.
DR. LAWLER: I can't top what Dan just said, but
in our discussion based on Eric's paper, it seems to me we're
collapsing distinctions. Some of the things we have been talking
about are, to repeat what I said before, merely ethical and have
no legal significance, like whether or not to eat the fries.
And in the same way, the man in the early stages of Alzheimer's
who's still clearly competent can choose or not choose treatment
as he pleases under the law. Paul should try to talk him out
of it or her out of it, but if he fails, that person dies and
that person is not considered to have committed suicide or anything
like that. Any of us can refuse treatment. That's one distinction.
The second distinction Eric calls to our attention is someone
in the mid-stages of Alzheimer's who, say, needs dialysis.
Can society deny dialysis to that person or at least deny paying
for dialysis to that person along, say, the British model? This
is a tough question.
Then the third distinction is the person in the final stages
of Alzheimer's who cannot choose for him or herself, and there
are two questions there. How should the decisions be made for
that person in terms of life sustaining treatment and so forth,
but secondly, how should that person be protected under the law?
I agree with Paul and Dan. The solution in principle is always
the philosopher-king-doctor with the loving family, but we don't
always have philosopher-king-doctors and loving family, and given
that, as Gil pointed out, we still need law. We still need rules
to protect these people to some measure or another.
So in the first case, there's no legal coercion at all involved.
In the second case it's not quite legal coercion, but if you
deny payment for treatment, that's pretty close to coercion,
and in the third case it's in a certain sense all coercion
because a person involved no longer has any choice.
CHAIRMAN KASS: Michael.
PROF. SANDEL: I'd like to go back to Charles'
and Leon's intuition that dementia makes a difference in deciding
whether to withhold treatment, and I'd like to explore the
moral force behind that intuition.
At the risk of reconvening the President's Council on Metaphysics,
but it has to do with the sentence that Leon highlighted in Eric's
paper in that second to the last paragraph, where Eric writes
that the loss of the soul, the memory, and the possibility of
mutual recognition, this is too real to deny the loss of something
profound about the demented self.
That's as close as we've come in this discussion to
giving an account of the intuition Charles said he had and that
Leon seems to share, that dementia makes a difference.
So that's the key sentence, the key suggestion so far in
this discussion. I would like to sharpen that by putting this
as a question to Robby and Gil and Alfonso and whomever else would
like to take it up.
Is it possible that the reason dementia matters is that advanced
dementia may amount, as Eric suggests, to the loss of the soul,
and if not, is that because you think that the death of the body
and the departure of the soul are guaranteed to coincide?
PROF. GEORGE: I think the soul is the substantial form
of the body. So the body is the person. Death is the death
of the person. It's the physical disintegration of the organism.
DR. FOSTER: But, Robby, in one sense I make the point
all the time, and I've been at the death bed a lot, that there's
sort of a sense that we always talk about people leaving, that
the breath of life sort of goes, and yet I can transplant the
heart. It works perfectly fine. I can transplant the kidneys.
I can use the corneas. The body has not disintegrated.
It has left there, and something is gone. It works fine. I
mean, you know, this is just plain science. It has not deteriorated.
There's something beyond the body.
I mean, I'm not one to get into a dualist thing and so forth,
but I'm just talking about simple observation that, you know,
the person is there and in one breath the person is not there,
and it's somber and sobering when you realize that something
has gone, but lying there, and in the case of advanced dementia
it was lying there before but it was still breathing and so forth.
I mean, I'm uneasy to say that, what you just said, and
more inclined to follow what Michael said about this. I mean,
as I say, don't get me into — I don't know about
this dualist stuff or triplets stuff and so forth, but that body,
it can still generate ATP. I mean, that heart can last for a
long time, well, when transplanted, not a long time; five years.
PROF. GEORGE: I don't think that the transplantable
nature of the organs is going to sustain the proposition that
we have integral organic functioning of the body there. So I
don't think that's any evidence that will work for what
you had in mind or what Michael has in mind.
DR. FOSTER: Well, I may not have understood what you
had in mind.
PROF. GEORGE: Yeah, I'm not saying that no organ
can be made functional.
DR. KRAUTHAMMER: As I understand it, Michael's question
is you can sell your soul but can you lose it before you die in
some other way, apart from selling it.
PROF. GEORGE: Right. I mean, I often in answering —
DR. KRAUTHAMMER: I'm embellishing his question really.
PROF. GEORGE: Yeah, I don't think I evaded the question,
Michael. Did I? I mean, you got my answer, didn't you?
PROF. SANDEL: Which is no.
PROF. GEORGE: Yes.
CHAIRMAN KASS: Gil, very quickly if you want since you
were challenged, and then we're going to really have to break.
PROF. MEILAENDER: Well, I'd just say two things.
One, I actually think that the view Dan articulates is one that
Christians have often been tempted to and that the tradition that's
best has always resisted, namely, that there's some real me
separate from the bodily existence. That's one thing.
And the other that, you know, I can't make any sense out
of the notion that there's a living self separate from the
living body. That I could not. I don't actually think the
soul language is very helpful, but if the body dies, the self
CHAIRMAN KASS: Yes. Eric, would you like a last word?
MR. COHEN: Very quickly. I'm torn in the middle
of this argument, but it seems to me you don't say a eulogy
for the person in the nursing home even at the very advanced stages
of dementia. And so even though in some ways they may be like
a corpse, they're not fully a corpse.
And corpses can, of course, never wink. At the same time, when
you give the eulogy, arguably, you eulogize the person that they
were at the best, in the height of their character, and that's
a part of their soul. Whether that's the best language I
don't know, but there is something missing in that person,
and so it seems to me the answer is both, as unsatisfying as that
CHAIRMAN KASS: Well, let me come in —
DR. FOSTER: But when I say something like that, I'm
speaking symbolically. I mean, I know the person is alive. I'm
still going to treat that person, and so forth. I mean, but I'm
talking about symbols here, like what I think you are, too, when
you say something is missing.
CHAIRMAN KASS: Let me commend to people's attention
just for further thought Eric buried in a footnote part of an
answer to the question of whether dementia should be considered
in treating people differently, the footnote on page 5. I won't
If you believe that it counts, he suggests that you must believe
one of those three things, and when we return to this topic, should
we do so, I think we really have to think this through, whether
these intuitions that some of us have that it counts can be sustained
depends, on the bottom of page 15, footnote 5.
I think this is a conversation well launched, but hardly concluded.
Let us break. Professor Burt is with us. We look forward to
Please try to be prompt. We'll take 12 minutes.
(Whereupon, the foregoing
matter went off the record at 10:08 a.m. and went back on the
record at 10:24 a.m.)