THURSDAY, September 8, 2005
Session 1: Ethical Caregiving in Our Aging Society I:
Larger Issues
Council Discussion
CHAIRMAN KASS: Good morning. Welcome Council members,
welcome members of the public to this, the 21st meeting
of the President's Council on Bioethics, the last meeting of
our second term, which concludes September 30th of this
month. Recognize the presence of Dick Roblin, the Designated Federal
Officer, in whose presence this is a legal meeting.
A couple of matters of personnel. Since we last met there's
been one change in the membership. Our colleague, Jim Wilson, resigned
earlier this year, having served long and well. I relied on him
for his sage advice, his great good sense, especially in the tough
times. I appreciated very much his skepticism about mere speculation,
and the attempt to turn speculations into prediction without doing
proper research. I think I speak not only for myself but for all
of us in expressing our gratitude for his excellent service and
for his wonderful collegiality.
Second, I want to put on the record my own personal gratitude
to my friend of longstanding, Dick Roblin, who was our scientific
director until he retired last January to be Senior Consultant for
scientific matters, but when Yuval was summoned to work in the White
House on the Domestic Policy Council, Dick kindly agreed to come
forward and serve as the acting Executive Director to steer us through
to the end of this term, and my deep gratitude to you, Dick.
The plan for this meeting is simple. Today we will try to finish
old business, and tomorrow we will look forward to the future on
the Council's third term. Our old business is the conclusion
of our work on "Ethical Caregiving in Our Aging Society,"
with special attention to questions of caregiving for persons with
dementia.
This is a process in which we've been engaged really since
April of 2004. I was surprised in reviewing things for this meeting,
we actually had 17 prior sessions on this topic over the last year
and a half. I won't review all of them, but we've had guest
presentations and numerous discussions amongst ourselves on the
whole range of topics, and eventually settled on some we thought
could be rendered manageable, and about which comments from us might,
in fact, be useful. And since our last meeting, a report has taken
shape with heavy lifting by Eric Cohen, who's been spearheading
this in the office with assistance from others, notably Adam Schulman
in the drafting. And from Council members, especially Gil, Rebecca,
Paul, Dan, and Mary Ann. You've seen drafts of earlier chapters.
We've had comments. We are moving towards the final stages
of this work, and I'm happy to announce that we scheduled a
date for the release of the report on the 29th of September.
And there will be a meeting of the National Press Club in the morning,
and a teleconference in the afternoon, where the press that cannot
be here will be able to speak with myself and other members of the
Council. And I'll be in touch with you, hoping I can elicit
some volunteers to participate in these events.
The plan and purpose for today's meeting is for the Council
to, in part, take stock of what we've done and to think about
certain kinds of larger residual questions that might occupy us,
or someone else going forward. And at the end of the day, to review
the provisional conclusions of our work together. In between —
in order, in fact, to enrich that last discussion — we will
have presentations from four invited guests, two from the perspective
of caregiving, two from the perspective of public policy, people
who have seen an earlier draft of the report, and who will be asked
to comment on how what we have done relates to their own activities
or the activities about which they are especially interested in,
and to offer some suggestions for possible research, and improvement
and reform in practices, both in caregiving and in terms of public
policy.
In this session, I wanted to flag, at least a few questions that
are at least still puzzling to me, and are questions that have come
up but that we've not, I think, properly addressed both philosophical
and practical individual, and cultural. And then to highlight one
or two of them that I think might pay us to have some discussion
about. And this comes, in part, out of comments from some of you
in earlier drafts.
The first two are things that we've had a fair amount of discussion
about. The report has in a way taken a position on these things,
so I don't think we should be discussing them at this point,
but I don't think we've heard the last word on these matters.
The first is the general question about how to think about dementia
in relation to the human person and the life cycle. It was, in
fact, the subject of our very first meeting in response to a paper
by Gil on the subject of dementia and identity. Is this really
one way of being old, or is this affliction, which is though age-dependent,
better seen as a disease or an assault on the human person?
And related to that, the question is, is this a very special kind
of disability, especially devastating to human possibility, or is
this, however much we might be inclined to think that, rather a
paradigmatic case and the foreshadowing of loss of human control
all together? And the report basically has a take on that, but
it makes that question still open in some ways for further reflection.
And I think it should be something that we want to continue to ponder.
Second, the report affirms the longstanding distinction in discussing
what kinds of treatments are to be regarded as optional, rather
than obligatory, makes much of the distinction between the burdens
imposed by added treatment and the burdens of the life being cared
for. And that we have affirmed the ethical importance of this distinction
for decisions about the uses of life-sustaining technologies. So
it remains somewhat puzzling, at least to some of us, if the burdens
that are now accrued to life are in some measure owed to the choices
made in previous treatment decisions, like the man who rescues someone
from the river who has jumped in to take their lives. You pull
a man out of the river and you somehow have a kind of responsibility
for his life thereafter. And in one of the topics that I do want
us to discuss, I think the question of what happens when technology
continues to provide new and additional means that are not themselves
burdensome, that are not especially risky, that are efficacious.
Can we continue to uphold this distinction which we have at least
for the time being rightly upheld.
The two questions that we've touched on; one we've given
almost no attention to. I know it's of great concern, but not
to Frank alone, is the resource allocation question. Mary Ann taking
the lead, Janet speaking forcefully on this subject, and quite concerned
about the potential inter-generational conflict that proper attention
to the care of the elderly might create. And we talk about the
need to set priorities and to balance our obligations, but we haven't
taken up the ethical task of doing that.
There is, of course, a political way to settle this question,
and it's not clear that ethical reflection is going to be very
efficacious in this matter, but it seems to me an ethics council
ought to be willing to try. And a question we've raised from
time to time is what do the old owe the young, not just individually
but collectively, and how thinking about this in terms of the common
good would one speak about what it is that we owe future generations,
and more narrowly, are there any limits that could properly be set
on expenditures, and care for those at the end of life, either on
the basis of age, or on the basis of massiveness of intervention
or the like, or is doing that implicitly to declare certain kinds
of lives second-class. It's a tough question. I'm not
sure that work on it will be useful to policymakers, but it does
seem to me, if we're going to speak about the conflict amongst
the generations, some attempt to articulate the common good along
those lines I think would be very welcome.
One topic which is closer to what we've done, and yet we haven't,
I think, faced up to this fully: we focused in our ethical analysis
largely on decisions to accept or forego life-sustaining treatments
for frail patients, especially those with dementia, when they get
sick with other problems. And we have emphasized in this discussion,
I think absolutely rightly, the ethical goal to benefit the life
that the patient still has, but I think we've all recognized
that this is a rather narrow focus of the subject of long-term care
for the frail, elderly, and people with dementia. Those questions
are driven by the advent of disease and decisions made in extremis,
but they don't touch those questions that we're going to
hear something about later today. They don't touch the questions
about taking away driving privileges, putting people in institutions,
all of those every day kinds of questions, which are perhaps not
the subject for a Council such as this, but certainly at the heart
of the obligations and dilemmas of care givers. And, moreover,
that focus on the end of life decisions, while it rightly focuses
on the goals of caregiving at the end of life, doesn't really
discuss the question about what are the reasonable goals for the
end of life all together? What is a good old age, what is a good
death in modern times? Thomas Cole raised this question for us.
We've had a little discussion on it, but not very much. And
it's not clear to me to what extent this particular question
is proper concern that ought to enter into the ethics of caregiving.
Dan and Paul, when they take care of patients who come to them
sick don't sort of sit back and try to ask themselves well,
what's a good old age, or what's a good death? They deal
with the suffering and the problems that present themselves, but
culturally speaking, these questions do inform. They inform our
practice of medicine, and our practice of medicine helps shape the
cultural views of what should happen here.
Now with this, I'm going to come to the end and open this
for discussion. It's the special role of the advances in technology
that I think deserve more attention than we've paid to it.
Peter and others in their comments have written about this. We
talk about the best available care as an obligation, regardless
of disability. But best available care here and now is not a static
matter, and because of the progressive character of medical technology,
this standard best care for the person as she or he is now, is always
going to be in flux.
Saving interventions that are today optional at best because they're
either burdensome or risky will, as technology advances, likely
become increasing safe and routine, so there seems to be a ratcheting
effect in what turns out to be not only acceptable, but perhaps
even obligatory under the standard of best care.
Today we say in most of our cases in ethical analysis of best
care, we'll say yes to antibiotics in most cases, but no to
organ replacement or dialysis. But what happens if these other
things become more proficient in these matters? Are we really going
to be obliged always to say yes to these things, regardless of the
condition of life, the people who have it?
If regenerative medicine begins to pay off in the way in which
its prophets are predicting, does that really mean that we're
obliged to offer and consider morally obligatory the provision of
replacement of organs or replacement tissues if those replacements
are not themselves burdensome, and are efficacious? I know, again,
this is not the question that comes up in the clinic, but it is,
I think, for people who have taken a stand on the best care standard,
have to pay some attention to what the changing technologies do,
I think, to our moral thinking about this. So that's, I think,
one question that I would like to pose. And perhaps we could start
with that, and then devote some part of the time to the resource
question and the ethics of inter-generational obligation. Was that
too long-winded and not a sufficiently clear question at the end?
Do you want that formulated as a question? We are now more or less
collectively agreed that the obligation to seek the best care of
the patient, to serve the life the patient now has, is not obligated
to introduce treatments that are inefficacious, are excessively
burdensome. Those are optional, and sometimes even should be not
foregone. But what happens when technologies to further and further
extend life, and further and further rescue become available, become
non-burdensome, if that's the case, and become common? Can
we simply say that we're under a kind of moral imperative to
continue, and to continue, and to continue? Or is there some kind
of built-in limit connected with the view of what is a proper end-of-life
kind of finitude, or are we constantly on the treadmill or on the
escalator going up? Alfonso.
DR. GÓMEZ-LOBO: I have no position to solve the
problem, but I would like to emphasize some of the problems that
you mentioned, particularly the following; that the traditional
criteria to distinguish between ordinary and extraordinary means,
of course, is the benefit/burden deliberation, but it seems to me
that that's precisely what the medical practice tries to achieve.
In other words, more benefit, being more efficacious, and less burdens,
less side effects. You'll correct me if I'm wrong, Dan,
but if that's the case, then we're on a collision course
here because on the one hand exactly the criteria that are supposed
to allow us to figure out when treatment should be stopped are exactly
the criteria that are compelling, that are driving forward the medical
progress. So we have a need to step back and re-think the criteria,
it seems to me, in ways that are not clear.
Now it's one thing to talk about serving the life of the patient.
Now there there's a possible pitfall, as well, and that's
something I think I learned from Gil; namely, that we should not
come to the point of thinking that the life itself is the burden
because, of course, that puts us into another quandary, so it seems
to me that there's a need for conceptual clarification in two
areas; one is on re-thinking benefit/burden criteria. And two,
re-thinking the question well, ultimately I didn't want to use
this expression but I have to use it, the quality of life issue.
I think that those are exactly the two points where we are facing
these problems.
CHAIRMAN KASS: Gil.
PROFESSOR MEILAENDER: I'm really going to
reply to your question with another one in a way, and I don't
know how helpful that is, but I have a hard time thinking about
the question in just general terms. I think about it in the specific
instance, but I have a very hard time figuring out kind of what
it means in general terms. Just by hypothesis, if organ replacement
became as simple and non-burdensome as getting a shot, your comparison
was with antibiotics, it became as simple as that, then why wouldn't
you do it?
See, the hypothesis is that technology will make this every bit
as helpful and every bit as non-burdensome to the patient as receiving
antibiotics. Okay. If that were really the case — see, I
have some doubts whether that will ever happen — but if that
were really the case, then I'm hard-pressed to figure out exactly
why one would decline it, except for maybe some larger questions
about it. I mean, I could see if someone who didn't want organ
replacement for other more kind of philosophical reasons.
CHAIRMAN KASS: See, this ties into one of the larger questions
I raised at the beginning, which is to say what is, in a way, the
tacit teaching about what it means to have old age, to be part of
a life cycle, and what kind of view of a good end of life, as opposed
to good end of life care, are we talking about? And by the way,
lest I run afoul of the practitioners who will correct me if I don't
correct myself, no one is going to say that organ replacement is
going to be like taking a shot. I mean, this we think would be
difficult things, even if you're just squirting in heart muscle
cells, which are going to go to... it's going to be much more
complicated. But the general point is that more and more things
are going to become easier to do, and relatively less burdensome
than they now are. And if the point is that there's no such
thing as enough, because anything which is possible and relatively
burden free becomes obligatory, then this particular moral principle,
coupled with the technological imperative produces a kind of continual
ratcheting up of what it is that we owe, and what it is that is
obligatory. And that seems to be a limitless enterprise, which
is very much at odds with notions that you and others around the
table have expressed about the shape of the life cycle, the accepting
of limits and so on, so I'm wondering whether we can in the
long term sustain the kind of moral principle that we have held
here.
I mean, I'm not trying to make it — I can make matters
worse by saying, and by the way, what that is that's going to
produce 20 years of people with dementia rather than 5 or 10. I
want to treat it without that further complication. Mary Ann.
PROF. GLENDON: Burdensome not only means burdensome in
the physical sense, but also these treatments are likely to be very,
very expensive, so I don't see how we can get away from the
other question that you raised about allocation of resources. Our
report focuses on one set of problems that are likely to arise in
the aging society, but let's not forget that another dimension
of the demographic change is a lower birth rate, and children become
less and less visible, and their needs become less and less the
subject of political attention, so I don't think we can discuss
your question without discussing how somehow this debate could be
structured so that it won't head toward conflict between the
generations, but toward finding ways to expand the pie, to emphasize
social solidarity, what the old owe the young, and what the young
owe the old.
You're right, politicians may pay no attention to it, but
if there's a role for this Council, it certainly is lifting
up that dimension of the problem.
CHAIRMAN KASS: Rebecca.
PROF. DRESSER: One concern I have is you mentioned the
technological imperative, and I think if we can agree that best
care does not always mean treatment, and that treatment doesn't
have to be given if it's inefficacious and excessively burdensome.
Then the question becomes well, how do you define that, and there
are lots of ways to define that. And my concern is in our society
and medical system, we tend to define it in a more narrow way than
I would prefer to define it. And there's a tendency to think
that these emerging technologies ought to be tried on everybody,
when one could make a good argument that it really is not efficacious
for the patient, and it's excessively burdensome. Sometimes
no one is there to make that case, and so I think one area where
we need to work is to enrich this notion of what does it mean to
be inefficacious?
I mean, virtually no treatment is 100 percent successful, and
so what are the percentages we're talking about in a particular
aging population? What are the success rates, what are the complication
rates? I think in many cases that are good questions about whether
using these things are best care for the patient, and that's
a way to set some limits on use of these new technologies without
getting into age-based rationing, or rationing on the basis of dementia
and that sort of approach.
CHAIRMAN KASS: Dan.
DR. FOSTER: I want to support a view that Mary Ann has
just made about the economic arguments. This doesn't justify
to the aged or — we treat congestive heart failure with about
nine drugs today, and you might add there's no question that
you live longer if you do this, but the costs are enormous for these
drugs, so even in the non-aging or the poor, we have this problem
that many physicians are very nervous about. We have to deal with
this every day. I mean, what percent of improvement do you get
from these nine drugs? It's pretty small. Same thing for the
treatment of cancer. A big advance from — well, I won't
mention any companies. And what it does, it adds two months to
the life of somebody who's got lung cancer and so forth at enormous
cost, so I don't see how you can avoid the economic argument.
And it's not immoral to consider the economic argument of the
cost.
Look, all we focus on is the United States, the richest nation
in the world and so forth. We make the argument in Africa all the
time, we'll give one drug of AIDS, if we can do that at all.
I mean just to give a drug so that a mother doesn't have a kid
with AIDS, and we just blithely think that the rest of the world,
it's okay for them to have this economic argument and so forth,
but it's immoral for us to consider it. That's just crazy.
There's not enough pie to support everybody in the world, or
even in the United States with the optimal treatment for everything,
and so I think it's just silly not to look at the fact that
most of what we spend for Medicare, for example, is at the end of
life. We spend millions and millions, and billions of dollars to
essentially prolong for a short time, or I don't know what a
short time is, so I think this is — if you really want to
get serious about what to do, we've got to consider the costs
of modern medicine.
I mean, if you just take a Levaquin pill for pneumonia, it's
$10 a capsule, so you get six pills and that's $60. Well, I
can afford that, or if you're insured I can do that, but many
people can't do it, so it's sort of a long-winded answer
to say I'm very much concerned about the economic costs of medicine
across the board, and that is particularly going to become important
in terms of if you're going to try to apply everything to somebody,
let's say whose life is valuable, is not purely vegetative,
but does not recognize anybody else and so forth. I don't see
how you can't play those things into the case.
We went through — I think I mentioned this at some council
before — medicine did. When dialysis first became available,
the U.K. decided they would not dialyze people, it was too costly.
And as a consequence, about 3,000 or 3,500 patients a year died
in the U.K. Now public pressure made them reverse this, but that
was an economic decision. But I remember a specific case in Dallas
where there was a vibrant chair of a big bank in Dallas, and an
SMU student at 18, and there was only the resource to dialyze one
of those, so you had to make a choice. Do we do the potential of
this 18-year old person, or do we preserve the CEO? I mean, we
don't do that any more, but those kind of issues have to come
into play. And to avoid them in the sense that every life is of
equal value, that's a moral principle that's true, but the
practical principle of the larger good has to be made by politicians
and so forth. What is the best good you can get out of the thing?
You said it better than I did, but I just want to say that I feel
strongly that that has to be taken into consideration. And I also
want to say publicly, I'm sort of embarrassed that the only
thing that we think about in the country about the sick, dying,
poor, and starving, or even catastrophes, is the United States of
America. And in some sense, I would like to have the President's
Council on Bioethics to consider the world. Are we meeting as the
richest and I think finest, I shouldn't say that, but I'm
very proud of the country, finest. I shouldn't say that; that
we ought to consider the moral obligations of the world maybe as
something that would be — I know you're going to immediately
turn to me and say oh do-gooder, you know.
CHAIRMAN KASS: No one will say that. I won't recognize
them to say that. Robby.
PROF. GEORGE: I want to go back to Leon's question
and try to address it head-on. I can't propose an answer, but
to stick with the question in all its difficulty. Let's imagine
that it would be possible fairly easily through the use of easy
organ transplantation or other forms of regenerative medicine, to
enable people to live to 250, 350. Is this not what you had in
mind, Leon?
CHAIRMAN KASS: I don't want to turn this into a science
fiction question.
PROF. GEORGE: Give me the life span then. We're talking
about 150?
CHAIRMAN KASS: I wasn't even projecting a particular
age. I was simply saying we've got people now die of organ
failure. One of the promises of regenerative medicine is at least
some of those organs that fail can be repaired when they fail.
The way in which you now repair hips, you might be able to repair
defective heart muscle, or a kidney. You might be able to do something
about Parkinson's Disease with stem cell research and various
other sorts of things.
PROF. GEORGE: We do — I mean, Dr. Carson and others
do transplantation now. Right?
CHAIRMAN KASS: Right.
PROF. GEORGE: Okay. So we've got that problem now.
We think we can handle it with the ethical principles that have
traditionally been affirmed in medicine for now, so it seems to
me what makes your challenge interesting is looking at a situation
where we're not simply concerned with heart transplants for
62-year-old people that will enable them to live to 78. I think
the question only becomes interesting if we're talking about
forms of regenerative medicine that are going to enable people to
live to much older ages, or am I wrong about that?
CHAIRMAN KASS: Well, let —
DR. FOSTER: Let me interrupt. You're not going to
make great changes in life expectancies with modification of transplantation
or things of that sort. If you're going to do that, it's
going to be manipulation of genes. As you know, as we've heard
here, we know the sirtuins and the genes that are involved in aging.
We know that. We know the genes are the same in the flies or the
slime mold, or in the worms. You remember that we heard that manipulation
of simple genes in the insulin pathway can cause a hermaphroditic
worm to live six times the normal pathway, so you could be — if
you altered that in humans, I don't that we'd be like the
worm, but you could conceivably live to be a Methuselah if you did
that, but that's not going to happen with drugs or things of
that sort, unless the drugs change the genes, so I just wanted to
try to answer that specific question.
I don't think any of the scientists that work on aging and
the prevention of aging, think that technical advances like transplant
or something like that are going to have a big effect on it, Robby.
I just wanted to interrupt to make that point.
PROF. GEORGE: No, I appreciate that, Dan, and I do remember
that being reported to us, but I think that Leon's problem only
becomes an interesting problem if we're talking about significant
life extension.
CHAIRMAN KASS: No, let me see if I can help.
PROF. GEORGE: Unless you — then the alternative would
be to build-in the problems that I thought you wanted to factor
out at least for now in order not to ratchet it up of dementia and
other — the extension of life in debilitated circumstances.
CHAIRMAN KASS: Well, we've talked in here before making
use of Osler's remark about pneumonia being the friend of the
aged.
PROF. GEORGE: Yes.
CHAIRMAN KASS: And, in fact, it's in drafts of what
we've got here, and there's a question as to whether in
that sense the old man has any friends at all, partly thanks, in
fact, to the great gifts that have given him a much longer life.
And the question is, is tech — and Dan Callahan, for example,
tries to write not by thinking about the lifespan extended to 150
or 200, but think about the decisions now made, and he has —
I think Gil will correct me on this — he's got sort of
two ways of trying to decide whether something is optional or not,
and its use.
One would be to say would you have invented a feeding tube so
that you could use it in Terry Schiavo? If the answer to that is
no, it's not obligatory to use it. And the other one has to
do with mourning. Do you have it? I don't want you to become
a defender of it, but there are two kind of criteria as you try
to decide — he's trying to repair to some view of a natural
life span, and to say certain kinds of things — we've
somehow changed the capacity of us to have a certain shaped life,
and it's partly the result of the new choices that technology
has produced.
Now if we're already at that kind of stage where those things
are questions, and the doctors will tell you those things are questions
for them right now, you don't have to imagine a life span to
150 to say what happens when we've got new and additional things
which are relatively burden-free physically. The expense question,
I haven't forgotten. I'm going to bring it back shortly,
but bracketing the expense question, how does the teaching benefit
the life the patient now has? Do not somehow set yourself against
that life. How is that going to play out? Are we're going
to have to, in a way, adopt the view that whatever is available
and efficacious, and not too burdensome is somehow morally obligatory?
Otherwise you get accused of trying to orchestrate the end of
your life, or setting yourself against the life the patient has.
Right now I think the moral categories — this is to underscore
Alfonso's point — right now I think the moral categories
still work, though people are nervous about it. And some of the
people who are nervous about it run to write living wills because
they are afraid they're going to wind up in circumstances that
they don't like the life that these benefits will purportedly
benefit. That's, I think, our complication. Now I don't
know if I've helped you or hindered you, but I don't want
to put this —
PROF. GEORGE: No, I think you've made me more confused
about the question. If it's essentially the same question we
have now in the case of an elderly person whose life can be extended
with antibiotics, it's essentially that case, but the number
is being increased by an additional 20 or 25 percent because of
advances in regenerative medicine, that would be one thing, and
it seems to me that it's less of a challenge, at least for people
who think that the antibiotics generally ought to be given, which
I gather we've as a Council committed ourselves to. Then it
doesn't seem to me to be the kind of big problem that you wanted
us to think about. If you alter it so that we're not talking
about a higher percentage of people facing the same challenge that
we face with a certain percentage of the people now into the area
of life extension, then I think it does become a big problem, in
part for reasons that Mary Ann and Dan have already articulated,
and not just the economic ones, but also the demographic ones, and
that it's going to shift how one leads a life, and our whole
understanding of our relationship to our work, to our education,
to other generations.
I mean, it's going to have a huge social impact, some of which
might reasonably be regarded as so negative as to warrant the judgment
that we ought not to make it a project to go into that life extension,
to try to accomplish that. And I think that judgment could be made
without violating any of the ethical norms that we've affirmed.
But then that raises, I think, the Callahan problem.
What if it happens anyway, and we do find ourselves in a situation
where we face the option of very long lives without great burdens
from the means that enable us to extend life in that way. Could
there be a legitimate reason for declining in individual cases the
use of those means? And what I would take to be a legitimate reason
in light of the principles lying behind the criteria that we've
identified as the ones to be focused on in making life and death
decisions, could such decisions be made without the reason for the
decisions being the proposition that the life in question was not
worth living, a life unworthy of life, and that the person facing
the decision, or the surrogate making the decision for the person
regards that person as better off dead. It seems to me there may
be. I have trouble, and here's where I find your question so
interesting, I have trouble articulating what that other reason
would be in the precise circumstances I've outlined. But somehow
I share your intuition that yes, the decision a person would be
making if the person made the decision to decline that care would
not necessarily be rooted in his affirmation of the proposition
that this life I've got is a Leben unwertes Leben.
CHAIRMAN KASS: I think you've captured, in part, the
nub of what I'm worried about. The intuition of Osler seems
to be somehow right, especially if you think there's such a
thing as a shape and a terminus. And the language — we have
to find some way to speak about that, I think, without declaring
what it is that is offensive and wrong, simply taking the question
on your terms. I think it's a challenge for those of us who
have tried to formulate the ethical principles in the way in which
we have. Dan, to this point?
DR. FOSTER: Yes, to this point. The practical things,
it seems to me — I've tried to argue this in a debate
on the volume that's coming out — is that, that the intuitive
feeling that you described of Osler said pneumonia is quick and
it's a peaceful friend to do that, is a principle I think we
ought to hold on to, rather than an absolute continuation of life.
Remember — I don't want to try to get theological here,
but remember that the demand to love neighbor as self — let's
say in the biblical view. You remember early in the Hebrew lessons
where we were to love God and love neighbor as self, the love for
God was absolute, but the love for neighbor was restricted. It
was as self. You shall love your neighbor as self. It was not
absolute and continuing everything. It was restricted as self,
and I believe that most of us, and certainly those of us who take
care of the dying, internists like myself and so forth, or somebody
is dealing with dementia, like Paul, intuitively know that they
themselves would not like a lot of the things that we do for themselves.
And so one of the things that we need to ask is, if I'm the
one lying there vegetatively, and my family is there, would I want
them to apply all these things, give me a new organ or anything?
The answer to that is of course not. Of course not, and so I think
that intuitive sense about this — I mean, I think you've
criticized me once about this thing helpfully that we needed even
if you're a good-hearted physician, let's say you need moral
guidance about what to do, and I think that principle is right,
and I'm glad that we're giving moral guidance and so forth,
but the intuitive sense about this, the common sense about this
seems sometimes to get lost with some devotion to a principle that
life always, either in the earliest of phases or in the latest of
phases is the highest demand that is made on the moral human, and
I believe that's wrong.
CHAIRMAN KASS: You'll have some takers on this. Peter
was in the queue from before. I'm not sure people around the
table are going to disagree with the last formulation.
PROF. GEORGE: No, what we're going to disagree with
is whether that is an accurate account of the position that Dan
is, in fact, I think going to criticize since nobody actually, or
at least nobody I know actually affirms the vitalism that Dan has
there characterized. Dan obviously has somebody in mind, or some
people in mind, who actually advocate a view. I think we would
want to articulate the view we actually hold, and then Dan can take
a crack at it. But what Dan has there criticized is a view I certainly
don't hold, and I think others who've defended the positions
that I've defended here don't hold it.
DR. FOSTER: Robby, let me say, I had nobody in mind.
I certainly did not have Robby George in mind, or anything else.
But it can be — sometimes it can be read that way, and all
I'm arguing for is a very simple principle; that all of us want
to be common sense against the general medical rules that we don't
want to have some standard that is unrealistic. That's all
I'm saying. It was not aimed at anything, and I was just teasing
him about telling me that I needed moral guidance. I need, terribly,
moral guidance.
CHAIRMAN KASS: Peter. You've been very patient.
PROF. LAWLER: Robby and Gil, I think, radicalized the
question. Regenerative medicine is highly speculative, especially
if it's considered in the full sense of both the rejuvenation
of organs and genetic manipulation, so Paul said in his comments
on the report that our lives, the average human life never gets
much beyond 80, and when the report speculated otherwise, Paul wrote
"No way, Jose." But that seems to be what distinguishes
physicians from scientists, because scientists do hold open the
possibility through genetic manipulation, organ rejuvenation that
the average human life might get a lot longer, so let's assume,
number one, these treatments are not burdensome. Let's assume,
number two, these treatments are not expensive, and we can easily
afford it. Not at first, these problems will exist at first, but
as science develops these problems will become less important.
Let's assume that this will absolutely break the life cycle.
Right now our report says thoughts about breaking the life cycle
are an exaggeration, but let's say people can live well into
three digits. Safe, reliable, inexpensive treatment. I don't
think — what would be the objection to giving it, even if
it messed up our lives, or put us into a whole new dimension of
human living, which is more or less childless, and requires a wholly
new kind of virtue. I mean, if we can't articulate why we shouldn't
do this, why shouldn't we do it?
CHAIRMAN KASS: Frank, are you going to take this up?
You'll respond to Peter?
DR. McHUGH: Right now?
CHAIRMAN KASS: Not if you don't want to. I mean,
Peter has raised a question, and someone might want to simply have
a bit of a response on this formulation of the question. Go ahead.
DR. FUKUYAMA: Yes. Okay. Well, I do think that it is
possible to articulate what a good death is that will help answer
this question; which is that a good death is probably one in which
you want a few months warning for the preparation, psychological
preparation for the family, and then when the end finally comes,
all of the systems ought to shut down pretty much simultaneously
within a relatively short period. All right? And it seems to me
the real problem that we've got now is that medicine, whether
it's regenerative or organ transplants, or just curing pneumonia
is that it keeps some of those systems going, and others it has
no effect on, and the whole crisis over Alzheimer's is that
we figured out how to keep the body going, but we don't have
a similar treatment, and I don't think anyone is going to do
brain transplants in any of these futuristic scenarios. And so
I think the general — and this is not an ethical problem,
it's just a utilitarian problem — is that most of the
kinds of treatment decisions that we're likely to confront are
ones that are actually not going to keep all of the systems going
simultaneously, but they're going to put people in this debilitated
state where the body is going, but the other things are not. So
that's, I think, the general — so it leads to something
that is not my definition of what a good death ought to be, so that's
just my simple-minded way of looking at it.
CHAIRMAN KASS: More to Peter on this? Ben. Thank you.
DR. CARSON: I just want to briefly address a couple of
things. I think, first of all, what Peter was talking about in
terms of general prolongation of life, we do have to keep in mind
that it does have significant implications in terms of population,
and in terms of jobs for the next generation. I mean, it's
not just an issue sitting on the table by itself. It has many interlocking
parts that we have to bear in mind. But back to what Dan was talking
about in terms of the economics. I resonate very, very strongly
with that, because we spend an enormous amount of the percentage
of money that we spend in a lifetime in the last months of life
trying to prolong people with relatively little benefit, particularly
in terms of quality of life.
At the same time, I think we have to be very, very cognizant that
there's a difference between prolongation of life and alleviating
suffering. For instance, one group of patients that I deal with,
patients with trigeminal neuralgia, and some of these patients are
very elderly and have Alzheimer's disease, have a very difficult
time articulating the excruciating pain that they're in. But
there are procedures that we can do that can eliminate that pain.
We should never, I think, hesitate to do those kinds of things in
those people, but I think that's a very separate issue from
just prolongation of life.
CHAIRMAN KASS: Paul, sorry.
DR. McHUGH: This isn't just to address, I guess, Peter's
points, although they are important. I want to come, as well, back
to what Dan and Mary Ann said in relationship to the economics of
things, and the services that we offer patients, and should ultimately
offer all human beings.
I lived with this woman for 46 years who keeps reminding me about
the importance of the poor almost every day I wake up, and says
you ought to remember the poor. And if I'm not remembering
the poor in Baltimore, she reminds me of the poor in Africa, and
there's other places; and so, therefore, I resonate vibrantly
with these concerns that we have about what we're doing.
On the other hand, I also am aware, as Dan has expressed, as all
doctors of Dan and my age remember, the dialysis issue — I
remember John Merrill at the Brigham walking down the hallway planning,
because there was no dialysis machine, not enough dialysis machines,
and we hadn't yet gotten to this kidney transplant, to shut
the machine off on a young man at age 18, and his head was down,
and it was really awful. But we have expanded that, and the economics
now of doing dialysis has become less and less because of our capacity
to concern ourselves with extending the care of those patients.
So the economic burden, the one, by the way, that Dan Callahan keeps
raising — my response often is to say we do well in our kind
of country, and our kind of organization as we make things less
and less expensive when we say we're going to have to have it
for everybody. But it's not only in relationship to the dialysis
experience, we've had it in all kinds of others.
The Polio epidemic of 1955, we decided we were going to take care
of all those patients, and we had them in iron lungs. You remember
that. And now that process of having these very awkward machines
in play has now been replaced with these remarkably less expensive
and more effective ventilator systems, which are extremely useful
in all kinds of other ways that we have organized.
Even the AIDS epidemic — all of you must remember that when
AIDS first appeared, the doctors and many of the sciences said look,
this is a virus. We're not good at curing viruses, correcting
viruses. Everybody, even at great centers like Hopkins, was very
hopeless about the ability that we were going to have, but we were
pushed hard by the particularly afflicted community, the gay community
in particular, to do something and stop sitting around. And now
we've changed that. We have these — I absolutely agree
with you, they're expensive treatments. And when you see the
poor children in Africa who have lost their parents to it, it breaks
your heart.
On the other hand, having them and accomplishing it was expensive,
has made it possible for us eventually to get things which will
be less expensive, and could go to other countries, and the process
also of encouraging other countries also to develop the social system
that could generate these things for themselves.
I'm less concerned, in other words, by the advances of science
here as they will reorganize our care, and bring certain kinds of
conflicts to the fore, conflicts that will have economic and population
significance, but I also agree with Dan that the life span is the
life span. I'm a doctor, and I'm not interested in increasing
it. Within the life span, I'm interested in removing disabilities,
and directing my attention towards the correction of disabilities
as they turn up, and eventually to have what Frank has mentioned,
and I think Mary Ann once mentioned before, the One-Hoss Shay phenomenon,
out to the thing where all of the things tend to fall apart together.
What concerns me, in other words, in fact, is not the science.
What concerns me about the best available care for patients if you
go and talk with them, is that they tell you they can't get
a doctor any more. They can go from specialist, to specialist,
to specialist, and get the unique science of today directed or not
directed to them, but they can't get a doctor who begins with
them at the beginning and walks the walk with them, and tells them
what they're going to expect, takes them back from the specialist
and decides what's going to happen further, and has the kind
of meaningful relationship with that person that permits the decisions
that will ultimately be made for the benefit of that patient who
you lived with.
Now it used to be that there were plenty of such doctors around,
but they're harder and harder to get. Now it's not that
I don't know plenty of people who do it, people like Dan are
rare, but they're not as rare as hen's teeth. There are
a lot of people who do it. The oncologists, for example, neuro
psychiatrists, and plenty of other people do it, but we're not
encouraging that in our specialist-oriented and science-oriented
way, and we may not be supporting it. We may not be supporting
it either out of the culture, or out of the finances and the like,
and I think that best available care more than anything else is
going to demand us reminding people again of that.
CHAIRMAN KASS: I want to say one tiny thing to you, Paul,
and then use the occasion to turn to this other question which Mary
Ann and Dan had started with, and I know Frank is interested.
I'm not sure that — I'll put it bluntly since we're
friends. I'm not sure that you feel sufficiently the force
of the degree to which the very science that you rightly embrace
is responsible for the kind of disappearance of the doctor that
you are calling for. That is to say, the specialization is precisely
the result of the advance of knowledge, and the ability, in fact,
to really do lots of things for people in a specialized way, and
the Oslers, they're not absolutely gone, and he was rare as
a hen's tooth in his time.
DR. McHUGH: By the way, I agree with you on that. I'm
not disagreeing with you about that. In fact, I for a number of
years ran the Professorial Promotions Committee at Hopkins, and
one of the questions that was often asked was would Osler get promoted
today? And the real question was well, you better go back and look
at what he did for exactly that reason.
No, I'm not disagreeing. I'm certainly not disagreeing
with anything that anyone has said here in one sense. I'm only
trying to give it the context in which the practice puts it forward.
The scientists work with regularities. Doctors work in the disorder
of experience, where all kinds of factors, scientific, meaningful,
cultural, economic are in play. And if they have a relationship
with the patient, the individual patient, they can carry people
through with a sense of meaning, and a sense of the art of ultimately
living the kind of thing that we hope for ourselves with their help.
CHAIRMAN KASS: Someone want in on this? Bill, did you
have a hand before?
DR. HURLBUT: I did, but if somebody has an intermediate
comment, I'm okay.
CHAIRMAN KASS: I was about to turn us to the other set
of questions, the effects of resource.
DR. HURLBUT: Then I'd like to speak before that.
CHAIRMAN KASS: I'm sorry. You want to comment before
that?
DR. HURLBUT: Yes.
CHAIRMAN KASS: Please.
DR. HURLBUT: Well, I just want to raise a rather vague
notion, that maybe our problems with regard to the specifics of
care and the over-extensions of technology will best be solved by
keeping in mind the integrated whole. After all, ethics is not
just about preservation of life, but about living well. And if
we keep in the forefront of our mind all the goods of living well,
then that will keep in balance a lot of things that could be exaggerated
out of proportion. And specifically, it seems to me that those
are communal goods, and individual goods.
When I think of medical interventions of the kind we've been
talking about here, I think maybe Dan would agree with me on this,
oftentimes a medical intervention actually does some good for the
patient, but also does something bad for the patient, since it alienates
the patient from himself. And the most obvious example might be
making us increasingly into what's been called cyborgs with
artificial parts.
You can imagine that if you have an artificial heart, you may
be pumping okay, but you may be slightly less than yourself. You
don't have quite the integrated endocrine responses to fear,
for example. Your heart doesn't start beating fast in response
to the other indicators and signals from your body.
We could repair certain organs, but they're slightly less
integrated to the whole of the person. And slowly but surely the
integrated physical being of the person is eroded. There's,
likewise, a parallel phenomenon, the psychological nature since
we're a psycho physical unity. The person gets alienated from
himself to some extent, to the point where you could imagine producing
a technological life extension that was, as you said, like an escalator
that is continuing to roll but is getting nowhere in terms of personal
process, and maybe even doesn't involve a memory or continuity
of being with the person. And the same thing, of course, can happen
to the role of a person within the society.
I think what's going on here is a strange question that anybody
who is involved in medicine is constantly asking himself; how do
we balance the good of the given, of the natural world, with the
obvious imperative of healing and life extension? And I think
we have a big problem with that in our current society. We tend
to go on all fronts along with our immediate and superficial goals,
often driven by pleasure and fear, but these can be superficial
goals that if pursued with undue emphasis can alienate us from our
deeper goods.
The question is how at the end of life do we keep in mind the
larger over-arching integration and purposes of life in relationship
to intervening powers of medicine? Technology can certainly break
the integrated connection that we're after, so then we have
to ask ourselves that very, very hard question that we struggled
with in this report. Is there such a thing as a natural good in
aging and death? And although it's very hard to speak of, especially
in a public document, what is the relationship to suffering in all
that?
None of us, at least I, for one, and I don't think anybody
in this room would want to have our society turned what "Brave
New World" did, where people live in these kind of 25-year-old
mentalities and then drop off the edge of a precipice. We feel
like there is a process to our lives. We feel like there's
meaning and purpose, that there's a source and significance
to our lives, and a significance of our lives that transcends life
itself, so what I want to say actually is maybe unhelpful, but I
want to say that I think Dan's comment "I don't want
to get theological", is maybe exactly the problem. Maybe
we don't specify this for an entire pluralistic society, but
frankly, I think that that's what we need to do, is at least
individually get theological in the broadly construed sense of theological,
that we have to ask ourselves where did we come from? What are
we for? How does our technology play into those purposes?
We certainly are in a love affair with technology, and it's
certainly crucial that we try to preserve and sustain the mystery
of life from being mowed down by the juggernaut of technology.
CHAIRMAN KASS: Thank you. I want to turn to the other
question, but I want to also thank Bill. I think we are trying
to do something very useful, albeit limited, in this particular
document, but if part of our aspiration really is richer bioethics,
we might, in fact, be in danger of contributing to some extent to
deflecting the attention from this. That was probably why I wanted
this discussion to be had; questions of the meaning of the life
cycle, the question of what is a good death is not the same as the
question about when you should refuse life sustaining treatments,
important though that latter question is. And to the extent to
which the ethical considerations are driven by those very pressing
concerns, we miss an opportunity, in fact, to flag these larger
kinds of questions, so I very much appreciate and sympathize with,
and I'm concerned about whether what we've done, however
useful, is actually adequate to the larger task, though it's
not clear to me that those larger things are — we can legitimate
such conversations, whether anybody but the people in the room would
find them welcome is another matter, but I'm very grateful for
that.
Let me turn to the question of — everybody is intuitively
bothered by the inequities, not just of medical care, but of inequities
generally. What to do about it is another matter, and how to deal
with it without making certain other kinds of things worse is a
long subject. They are political questions. There are people who
have been very critical of this Council for not taking up the subject
of the effects of the distribution of medical resources. Though
they were not primarily interested in our actually exploring the
ethical issues, they were interested in our taking a particular
side on this and becoming advocates.
I happen to think that this is a very important and difficult
ethical question, but I'm not really sure how you set about
doing it. And if I were to say turn to my friend, Mary Ann, who
is I think prescient on this subject of tension amongst the generations,
a kind of forgetfulness that after all, all of us, God willing,
get a chance to be at all stages of the life cycle and, therefore,
declaring war on one stage against the other is just deeply dumb.
Yet, you have the AARP but you don't have the comparable equivalent
for the children under five. Even the ones with resources don't
have people to speak for them, so the question is how might this
Council set about trying to think about the ethical way, the kind
of ethic for speaking about these things, and to do so not in a
language you should be nice to your neighbor, but do so in some
way that could actually — but to make it concrete and useful.
Is it possible to speak about the obligations between the generations
in a way that has some kind of bite? Is there a way to speak about
the more limited question about how to set limits, more modest limits
on the expenditures that here have been discussed in which lots
of money seems to be spent for very little gain, and that robs funds
that could be better used for other things. If Janet were here,
she would say so in spades.
Now it's one thing to sort of issue a cry for the problem.
It's another thing to say how could careful reflection be actually
helpful on this subject besides raising your hand and saying this
is a terrible situation? Paul.
DR. McHUGH: Just a very minor qualification, but I think
your formulation right near the end actually makes it way too easy.
You said lots of money spent for very little gain. There's
lots of money spent for a lot of gain, but nevertheless, the kinds
of problems that we have. I think that —
CHAIRMAN KASS: Let me take the correction completely.
And since you have the floor, and since ethics is your field, may
I invite you to put your toe in this water? Can a body like this
actually say something on that subject?
DR. McHUGH: Even though I wasn't named as one of the
people for whom this was a primary concern, I'm supposed to
say something. Well, yes, a body like this can say something, but
my own view and, of course, all views on this question are arguable
and disputed. My own view is that the question is to some considerable
extent a political one; that is to say, there are always many more
things that we need to spend our resources on than the resources
will cover. And it's very hard to find the level of reflection
from which to say this is the way it must be done. And I think
to some degree these things do have to be fought out at a political
level.
Now that does mean that your five and under category will not
be speaking for itself, of course, in that political argument, and
somebody else is going to have to do it. Maybe part of the role
of ethical reflection is to be alert to that fact, and be aware
that somebody else will have to do that, so in that sense it seems
to me there would be a kind of moral role to play. But for me,
anyway, I don't think it's possible to delineate what the
right distribution of our resources would look like. I think that
has to be argued out.
The other thing I'd say is that however you work it out, you
have to have some kind of micro/macro distinction. In other words,
I don't want my physician pondering whether providing care for
me is the best way to serve the larger common good. I would like
my physician to think that I'm the patient, and that's
my doctor, and there's a certain kind of relationship at work
there.
It's a different matter whether at the macro level we ought
to think about ways of allocating resources such that maybe there's
some kinds of care my physician just can't provide for me.
He does me no wrong if he doesn't provide for me what we haven't
made possible to do. But if it's possible and it's there,
and it's within my means, or my insurance means, or whatever,
I'm very reluctant to have physicians begin to think of themselves
simply as servants of the larger good, and not of particular patients,
so those are the several kinds of ways into the question that I'd
take.
CHAIRMAN KASS: Let me lean on you just slightly, if you
don't mind. I like the distinction between the macro and the
micro, and I think these kinds of questions in so far as they're
questions of policy really have to be social questions, and socially
everybody understands that. But if someone were to say to you,
Paul, look — society has basically decided that we are misallocating
our medical resources, and we want this Council to offer us ethical
advice on Dan Callahan's theme setting limits. Is there an
ethical way to have a discussion? I grant that the political process
might not pay any attention, but would you think that there is a
way to have a serious discussion, and to develop some kind of ethical
norms or guidance in general terms that might help people to figure
out what's too much, without saying so-and-so's life is
not worth living or not extending, but as a matter of social policy,
or if somebody came to you and said look, that's not for ethicists
to talk about, and we shouldn't try.
DR. McHUGH: Well, I never accept someone telling me that
something isn't for me to talk about, so I wouldn't take
that route. I don't find the "how much is too much?"
a very fruitful question at the level of particular patients. And
I wouldn't use the language of medical care here. I'd want
to talk about research.
Dan Callahan has also pointed out that the NIH research budget
is the one thing that we keep pumping more and more money into year
after year, and that's part of what generates our problem, because
if you got a new and better treatment, and you're my doctor
and my insurance will pay for it, I think you better give it to
me, not decide that there's somebody younger and healthier,
and nicer who the community would be better served by our keeping
alive. So yes, I think we can talk about it, but I would start
talking about research priorities rather than start talking at the
level of medical care and how much is too much for particular patients
in particular circumstances. I want to start talking at the macro
level.
CHAIRMAN KASS: Or what Medicare should pay for.
DR. McHUGH: I mean, certainly that's a legitimate
topic, or at least some kind of lexical ranking of what it should
pay for certainly there.
CHAIRMAN KASS: Mary Ann, then Ben.
PROF. GLENDON: So given that these questions are going
to come up in the framework of interest group politics with some
groups not represented at all, we've always said on this Council,
I think, that one of our aims is to try to enrich political discussions.
It's a very ambitious aim, and the question of allocation of
resources, I think one very useful question that almost never gets
asked, but that can be raised by a group like this is addressing
each contending party for a piece of the pie. Ask them to explain
what kind of society their program is likely to bring into being,
and ask them if that kind of society is the one that they really
want to live in. I think it's just a very helpful question
to draw things out a few steps. What probabilities are you setting
in motion with these decisions, especially at the macro level?
But what are we going to do research on, just things that are of
interest to the elderly, or other matters? So just a way of framing
the question I think is something that — we can't solve
the problem. We can't make the political decisions, but we've
always said that we're trying to raise the level of the national
conversation.
CHAIRMAN KASS: Ben, and then Frank.
DR. CARSON: Leon, I think it's not only a legitimate
topic for us to consider, I think it would almost be negligent not
to do so, because it's such an important issue for our society.
We have certain norms and expectations in our society. For instance,
we feel that everybody is entitled to shelter, to a roof over their
head. And we, as a society, go through great lengths to make sure
that that occurs for the vast majority of people. However, there
are some people who go beyond that, and perhaps live in very luxurious
accommodations. We don't begrudge them that. And by the same
token, we need to begin, I believe, to look at certain types of
care that are provided, and that are available.
Certainly, there needs to be a basic level of care that is given.
If people want to go beyond that, just like if they want to go
beyond basic shelter, then that should be their responsibility.
It shouldn't be the responsibility of the society, number one.
Number two, I wonder if at some point there is a way that we can
integrate into this whole cost issue the concept that one-seventh
of our economy is based on healthcare. I personally think that's
way too much, but the reason that it is, is because we tend to be
oriented towards sickness. We want to fill up the hospitals, we
want to fill up the ICU beds, we want to treat this, and this, and
that. And we don't spend anywhere near an appropriate amount
of time dealing with wellness, which would save us an enormous amount
of money. I wonder if we have some obligation to bring that out?
CHAIRMAN KASS: Very nice. Frank.
DR. FUKUYAMA: Well, I'm the one that thought that
we ought to have a statement, which I'm glad has got into the
report, that there's actually a moral case to be made for the
government mandating the socialization of the costs and risks of
long-term medical care. We'll see if that survives in the draft,
and I think it's a perfectly legitimate topic for a moral or
an ethical discussion for the following reasons, and it really gets
to the whole question of the moral arguments between the left and
right in this country over the legitimacy of the welfare state.
And in this case, I believe that this particular extension of the
welfare state is perfectly justified, for the following reasons.
Americans are much more inclined than Europeans to not like social
solidarity provided through central government. Americans believe
that for moral reasons, it is better to have people and families
be self-reliant, and so when FDR introduced Social Security, one
of the conservative arguments against it was that this would relieve
families of a sense of obligation towards their parents or older
people to care for them. And, in fact, that is one of the consequences
of state-provided Social Security. However, I think that if you
think about that, so in a sense a lot of the model that people have
is that people ought to think ahead, save money for their own debility
and take care of themselves without the government stepping in.
Now I think that that just doesn't work under present circumstances
for a lot of reasons. First of all, it's dependent on an old
model of the family that just does not exist any more. Privately
provided healthcare was dependent on the uncompensated labor of
basically women up until the revolution that took place in the 60s
and 70s, and it is simply not realistic — and even in these
Confuscian societies in Asia where that was actually built into
the ethical structure of the society, that's all breaking down
because of the changes that Mary Ann referred to in family structure,
this dramatic drop in fertility, plus the greatly extended life
times, and then the need in the case of Alzheimer's, 24-hour-a-day
care over an extended period, five to ten years. It is something
that families simply cannot — I mean, the idea that families
could provide this I think is just completely unrealistic.
The other moral case that is made by conservatives against these
kinds of government mandated benefits is the moral hazard one, that
if you insure against something, you're going to get more of
that bad behavior. That was the case against Aid to Families with
Dependent Children. It insured against the risk of a single woman
raising a child, and it encouraged more out-of-wedlock births because
you now knew that you could raise a child without having to marry
the father. And I would say that this simply does not apply in
this case. There is no moral hazard involved in mandating the socialization
of the risk against long-term medical care. Nobody is going to
get Alzheimer's deliberately because they know the government
is going to protect them economically from doing this. It's
a pure genetic lottery as to who does it.
Now I think that there is a public policy dimension to this that
we do not have to address, because there's lots of different
ways of taking care of this. The government could provide — right
now, the current policy is really pretty defective, because right
now what everyone does is they try to figure out how to strip all
the assets out of their parents' bank accounts so that they
can declare themselves bankrupt, and then qualify for Medicaid.
So, in fact, we are providing government insurance for this, but
through a way that was never intended. It's through a gaming
of the system, so it's a very dysfunctional way of going about
it, but you could either have the government provide this insurance
directly. You could do it as we do in the case of automobile insurance,
where we mandate that everybody must insure themselves against the
risk of liability and so forth. Or at a very minimum, you can prevent
the private market from doing what it would do without this kind
of intervention, which is to try to cherry pick; use, for example,
genetic information on who is likely to get Alzheimer's, and
then raise insurance rates for people with that propensity. And
certainly at a very minimum, I would say that you should not permit
private insurance to make those kinds of discrimination, so I don't
think it's up to us to say what particular public policy ought
to fix this problem, but it does seem to me that you can make a
pretty straightforward moral case that this is one instance where
there's a kind of public good that needs to be addressed that
the private market and private individuals simply are not going
to be able to take care of on their own.
CHAIRMAN KASS: Peter, take the last comment, and we'll
take a break because we have guests.
PROF. LAWLER: Let me just say something very quickly.
I agree with about 90 percent of what Frank said, and this afternoon,
because we have guests, I will even say that our report points to
certain kinds of public policies over others, but let's let
that go until this afternoon.
CHAIRMAN KASS: Okay. Look, I think obviously we didn't
exhaust any of the things we've talked about here, but I think
there were things that were raised in this discussion that could
come back tomorrow morning when we talk about future directions,
and future activities of the Council, and be thinking about that
and other things when we reconvene on that. We've run five
minutes over. We'll take 15 minutes. We'll start at 10
minutes to the hour. Please be prompt because we have guests.