September 8, 2005
COUNCIL MEMBERS PRESENT
Leon R. Kass, M.D., Ph.D.,
American Enterprise Institute
Benjamin S. Carson,
Johns Hopkins Medical Institutions
Rebecca S. Dresser, J.D.
Washington University School of Law
Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School
Francis Fukuyama, Ph.D.
Johns Hopkins University
P. George, D.Phil., J.D.
Ann Glendon, J.D., L.LM.
William B. Hurlbut,
Peter A. Lawler, Ph.D.
Johns Hopkins University School of Medicine
Gilbert C. Meilaender,
Diana J. Schaub, Ph.D.
WELCOME AND ANNNOUNCEMENTS
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
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
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
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
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
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
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
PROF. GEORGE: Give me the life span then. We're talking
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
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
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,
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
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
DR. HURLBUT: I did, but if somebody has an intermediate comment,
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
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
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
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
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
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
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
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
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
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.
SESSION 2: ETHICAL CAREGIVING IN
OUR AGING SOCIETY II: CAREGIVING PERSPECTIVES
CHAIRMAN KASS: On the record. This is our second session entitled
"Ethical Caregiving in Our Aging Society: Caregiving Perspective."
In this session and the next, we've invited practitioners and
students of caregiving to help us think about two general matters:
first, how our work to-date relating to the actual activities of
caregivings, caregiving for persons with dementia, this session,
and second, to the public policy aspects of the subject of giving
care for the elderly and the frail, the subject this afternoon.
All four of these guests have received the recent draft chapters
of our report for review. They're not primarily to be commenting
on the report. What they've been asked to do is to draw on their
own experience, a current research, their own or others, to identify
key areas that needed attention and/or reform. They've been
invited to suggest ways that what we have done in our work to-date
might relate to ongoing activities and practices, might be brought
into relation to those ongoing activities and practices or could
be developed further fruitfully in future work.
To speak from both clinical and research caregiving perspectives,
we're very fortunate in this session to have with us two people
who are long immersed in the care of the elderly and care of persons
with dementia. Both have been also keenly interested and active
in the development of ethical standards and teaching in this area.
Dr. Greg Sachs is the Chief of the Section of Geriatrics and Professor
of Medicine at the University of Chicago, also Co-Director for the
Center of Comprehensive Care and Research on Memory Disorders.
He's been a member and past Chair of the Ethics Committee of
the American Geriatrics Society. He's now still a member.
He's also on the Ethics Advisory Panel of the National Alzheimer's
Association and 25 years ago this fall, he reminds me, he was in
a class of mine on Science and Society at the University of Chicago.
Second, Dr. Peter Rabins who is the Co-Director of the Division
of Geriatric and Neuropsychiatry in the Department of Psychiatry
at Johns Hopkins, Principal Investigator of an NIMDS grant to assess
Care Decisions in Late Stage Dementia, co-author of "36 Hour
Day," a book called Getting Old Without Getting Anxious
and a guidebook Practical Dementia Care. Dr. Rabins has
taken special pains to get here from a meeting where they were in
fact working on the revision, if I understand, of a text in this
area. And if you'll forgive me for mentioning this to the group,
we'd like to wish you a Happy Birthday.
Thank you both for being here. We'll start with Dr. Sachs
and then Dr. Rabins.
DR. SACHS: Thank you very much. It's really a privilege
to be able to speak with you and I want to thank you for that and
also for your attention to this subject which is very near and dear
to my heart.
Just an outline of my remarks, I'm going to start with a case
because I'm a clinician and also because I think it's very
important to bring us back to the clinical realities in which these
decisions are made. And then my remarks will cover the major chapters
within the draft report though not commenting in any detail on the
The main points that I'll make to start with some of my conclusions
are what you call the "Mass Geriatrics Society" or what
those of us in the field call the "Demographic Imperative"
is very real. In fact, it may be even more scary than people are
currently projecting and we shouldn't be counting on cures or major
advances in treatment to change our preparing for the potential
Second, the section on advanced directives, I think that these
clearly are not exclusive for the problem of providing good end-of-life
care for people with advanced dementia, but they can be part of
a solution for some people and so should not discarded.
Third, on the issue of ethics in caregiving especially when it
comes to end-of-life care that dementia matters a great deal, that
it is not just a part of aging but it is something special and different
and is both clinically and morally relevant.
In particular, I think I'd like to emphasize that I am less
worried about the advancing number of people and smaller numbers
of caregivers about what may happen in terms of undervaluing and
undertreating people and much more worried about the propensity
to over treat, to not provide good end-of-life care, and in fact,
to have a healthcare system that is particularly ill-suited for
the ongoing care of people with dementia.
And finally, I'll conclude with some comments in which I think
that it's very important for this Council to be trying to focus
on these issues about chronic care, chronic disease and end-of-life
issues because I think many other bodies in the field have already
started to move towards focusing more and more so on issues around
cure and prevention of even things like Alzheimer's Disease.
So to start with my case, this was a 69-year-old woman who had
been living with advanced dementia in a nursing home for two years.
At the point at which I'm commenting, she was unable to recognize
family, only able to speak a few intelligible words and had had
multiple hospitalizations for things like pneumonia. Her agitation
and other problematic behavior has caused her to be restrained or
sedated on a regular basis. She died in that nursing home in that
state restrained with no particular palliative care efforts in place
and with no family around her.
So what's notable about that case is first of all it occurred
more than 20 years ago. Sadly, that's the way that many people
still die today with advanced dementia. Because it occurred 20
years ago, she was not tube fed. I guarantee you in most situations
today in most nursing homes that would have become a real issue
and there would have been a lot of pressure to put in feeding tube.
She was younger than most patients with Alzheimer's Disease
and finally, that patient was my maternal grandmother.
So I bring it up to also say something about my motivations both
in terms of improving end-of-life care and wishing that we had effective
treatments because of my increased risk of having this disease.
And also because of having already fielded my mother's advanced
directive of wanting me to shoot her if she should end up like her
mother which I told her that since I was already on record of being
against physician-assisted suicide and voluntary active euthanasia
that I couldn't carry that out.
My other disclaimers, one is that I have a nine-year-old son who
has some development disabilities and so I have an intense personal
interest as well as an professional one in looking at these issues
of how we value quality of life and taking great care not to project
what we see as value and quality and make decisions based solely
on those. And you've already made my final disclaimer about
our connection from 25 years ago and let other people draw their
conclusions as to whether or not that's important.
So to the demographic comparative, the numbers are very real and
we really should be scared by them. I'm not somebody who in
general is interested in apocalyptic tales but the numbers even
if you take the most conservative sorts of estimates are very scary
in terms of the numbers of people who have dementia and there's
a growing body of research looking at things like cancer survivors
and their increased risk of dementia, survivors of coronary bypass
surgery and their increased risk of dementia as well as the sort
of epidemic of obesity and how that is linked to hypertension, high
cholesterol, diabetes and all of those risk factors perhaps being
risk factors for dementia as well. So in a sense, there are many
things that we're doing either because of life style or because
of other medical treatment that may actually swell the numbers of
people with dementia even further.
Very quickly, I wouldn't count on cures. We don't have
very many of them, even the ones that were alluded to earlier today,
either cures are of very effective treatments whether it's HIV
or polio. We have done pretty well when it comes to infectious
diseases. We don't do well when it comes to late-onset, multifactorial
diseases. I think Alzheimer's Disease and other dementias are
going to be the kinds of things that aren't going to have a
I think also that the notion out there that if we could just delay
the onset of dementia by a few years that somehow that would solve
many of these problems that people would reliably die a few years
later without getting dementia is really a hope and there's
really little evidence to suspect that that will be true. That
in fact, in addition to the nine different medicines we now use
for congestive heart disease, we have things like Medicare now will
pay for implantable cardiac defibrillator in advanced congestive
heart failure. So it's even more likely, I think, that somebody
who gets advanced dementia will have other kinds of supportive care
that will keep them alive longer rather than allowing them to die
quickly whether it's from that arrhythmia or the pneumonia,
the friend of an old man.
So that's the tidal wave of people with dementia and our preparedness.
You've already talked and written about long-term care and the
inadequacies of the numbers of caregivers. But to flesh that out
a little bit, surveys still suggest that perhaps as many as one-third
of older patients say that they would prefer to die rather than
being in a nursing home and that's even though we've made
considerable leaps in care in the last 15 years.
The turnover in nursing homes of those people who made a little
bit more than minimum wage, the certified nurses' assistants
in many facilities, is 90 percent or greater per year. So it's
not like they have a stable body of employees where we can do quality
improvement and education and expect to make really big differences.
And we really aren't doing things that I think, whether it's
because of specialization or research or some of the incentives
within Medicare and other places where we are not supporting comprehensive
care, geriatric-type approaches, and in fact in many ways, there
are disincentives. When I started off as the Chief of Geriatrics,
our hospital counted on each of our patients providing a net $3,000
profit to their bottomline.
They now think of Medicare the way they used to think of Medicaid
that at best they break even or they lose money. They are not interested
in expanding the practice or hiring more geriatricians. That's
the way that we value things in American medicine is by paying for
it. We're not paying for the kind of care that we think we
want to get at the end of life.
So, to advanced directives now: For many practical reasons as
well as the conceptual ones that you cover very well in the report,
I would agree that they are not the answer as any sort of simple
solution to a complex problem would fail. But I think it is important
to point out that they can be a partial answer for some people.
So for the few who have them who have given it some thought in
making an advanced directive as part of a more comprehensive planning
process with their family and with their physician, they can be
helpful. It may not be that they'll be instrumental in making
individual decisions, but it will help the entire decision making
process along the line.
And we should take advantage of the fact that all states have
them. Most states do have laws in place of decision making for
families in the absence of advanced directives. And most importantly
for patients with dementia, family caregivers make decisions for
many years for them anyway, whether it's for where they live,
what they get to do during the day, the medications they take and
I think it's a little bit unfair in a sense to all of a sudden
cast a really harsh glance at how they would be making decisions
when it comes to end-of-life care.
I've always been amazed at the kind of care that the families
of my patients provide often for the best interests of the patient,
often at great cost to themselves, often under great duress. So
I think there still is a value to using them where people have them
but we should not be pushing them as a solution to this area.
Turning now to the larger portion about ethical caregiving and
focusing in particular on end-of-life care, I first want to do a
little bit of correcting what I think is a caricature out there
of Alzheimer's Disease or dementia in a sense where it may be
portrayed really as a memory disorder only and that one in which
people are aware when they start to get the illness, have anxiety
or depression and then sort of fade away over years, perhaps even
In truth, dementia is something that affects multiple cognitive
domains. Often individuals who are affected are unaware of the
process and do not have insight into it which creates its own complications
when you're trying to negotiate a care plan. It's frequently
accompanied by psychiatric symptoms and I know you're going
to mention many of those including things like delusions, other
kinds of psychotic behavior, anxiety and depression. In many of
those symptoms, the things that actually cause suffering for our
patients with dementia really have very limited treatments available.
I think that's actually an area where we need to be focusing
research and care.
Many kinds of dementia whether it's dementia with Lewy Bodies
or multi-infarc dementia do have physical symptoms where patients
will get them as the diseases progress. Furthermore, people with
dementia actually live for a lot shorter period of time than what
was once thought.
Even though I planned on not having any visual aids, this one
graph that was just passed out is based on the work Eric Larson
and colleagues in Seattle looking at the impact of Alzheimer's
Disease on remaining life expectancy and you can see for the middle
group, which is people of average health, if you take a 70-year-old
man, the average person would live about 12 years. The average
Alzheimer's patient at age 70 will live only about four years.
In fact, Alzheimer's Disease by itself has more an impact on
a life expectancy than most other chronic illnesses that would put
somebody in the lower quartile of health.
Furthermore, if you start looking at other kinds of prognostic
indications including nursing home residents, severe psychiatric
symptoms and hospitalization, you can start to come up with a prognosis
for some groups of patients such as Susan Mitchell showed in the
nursing home who may have a 70 percent six-month mortality. So
hearkening back (at least I learned something in college) that nasty,
short and brutish may actually be more applicable to the life of
somebody with dementia.
To flesh that out a little bit with even just in the last two
weeks while I was thinking about what I might say here, the kinds
of patients that I've seen have included a gentleman who is
just being diagnosed with Alzheimer's Disease but already his
wife was dealing with the fact that he was delusional, thought that
she had caused Alzheimer's Disease in his family and he had
been threatening her with a knife. Another patient with more advanced
disease who had been hospitalized for an ankle fracture, a blood
clot, dehydration on three separate occasions was returning home
to having care from a sister who is unable to care for her and essentially
three days a week help when she really needed 24 hour care.
Another patient who came to clinic with dementia and congestive
heart failure telling me that she was short of breath but her daughter
who was estranged from her because of abuse from a stepfather did
not accompany her to clinic. So I had no way of knowing whether
or not she was taking her medication and whether or not her symptoms
as she reported them to me in clinic were reliable.
Another patient with an altercation about telling him that he
wouldn't be able to drive because we have very limited options
in many areas over what they can do in place of that. Another patient
with a son struggling to keep his mother home alone but needing
to come over in the middle of the night to assure her that there
was nobody trying to break in needing to do things like checking
under her bed.
Another call from a hospice nurse about a patient with advanced
dementia and having a discussion about why we were not going to
use antibodies. In this case, there was no metastatic cancer or
severe pain but a patient with this limited life expectancy that
foregoing antibodies would be appropriate.
So I think, as I point out, these are many of the concerns as
we're approaching the end of life and the paper that I submitted
in advance from the Journal of General Internal Medicine
really goes into more detail about some of the ways in which providing
end-of-life care to people with dementia is particularly challenging.
I think it is very clear that people with dementia suffer more
than many other patients in part because it's more difficult
to tell when they are having pain. We do a very poor job of assessing
it. They're more at risk of having treatments of either no
benefit or unclear benefit including tube feeding which is something
where there's actually pretty substantial literature that we
haven't been able to prove that it's very helpful in a very
I think the other thing to emphasize from that paper was talking
about some of the system issues that really need to be addressed
because I think if you try and address the clinic individual decision
making without dealing with the system issue, it's not going
to go very far. Then we clearly have some misaligned incentives
when we start talking about people with advanced dementia who are
dying in the nursing home.
The sort of situation that I have in mind is where the nursing
home, when the patient is suffering more and they have a pneumonia
and is getting close to dying, they are having to provide more care.
It costs them more but they are not reimbursed more. Depending
on where they are and if the patient is on Medicaid, if they send
the patient to the hospital they can actually be paid a bed-hold
and they are actually making money while the patient is in the hospital
rather than losing money from having to provide additional care.
The physician instead of being paid at a lower rate and doing less
frequent visits hospitalizes the patient and makes more money by
seeing the patient on a daily basis and gets reimbursed at a higher
The hospital will make money because the patient is liable to
get out shorter than DRG for something like a pneumonia. All the
financial incentives are aligned for this patient to be transferred
to the hospital rather than being cared for in the nursing home
and being allowed to die peacefully.
In many of these situations coming back to the way in which the
report has framed things about the best care for patients who are
nearing the end of life with dementia, it really should not be conceived
of as the most care or the most treatment or the most medical treatment.
In fact, the best care for somebody who is dying with dementia is
like for most people who are nearing the end of life should be comfort
and company. That doesn't mean the defibrillator, antibodies,
stem cells or many other things.
In turning finally to some of the issues that I alluded to at
the beginning about where our society seems to be placing its emphasis,
there are ways in which I think whether it's in research or
in advocacy or the media that we've been turning away just in
the last few years from the needs of people with advanced dementia.
When you were talking earlier about the research agenda, we can
look at things like a $60 million NIA initiative on brain imaging
that's focusing on distinguishing aging, minor cognitive impairment
and early Alzheimer's Disease.
In contrast, a recent review by AHRQ found that there was really
no substantial evidence base for the palliative care treatment for
patients with dementia. Two major reviews about the treatment of
pain in patients with dementia said essentially the same thing.
We don't have the data.
We have a recent study using a drug for Alzheimer's Disease
and minor cognitive impairment which is thought to be the forerunner
of Alzheimer's Disease and it temporarily delayed the conversion
from minor cognitive impairment to Alzheimer's Disease without
affecting the eventual outcome. The same numbers of people got
Alzheimer's over three years.
There are going to be people who are going to be pushing for drugs
to be approved for treating minor cognitive impairment. It's
been estimated that this is $15 billion marketplace for the drug
companies. On the other hand when we were talking about the symptoms
of people with advanced dementia, we now have a warning from the
FDA basically pointing out that for all the drugs that we use to
treat psychotic symptoms in patients with dementia, they are essentially
not approved and now there's accumulating evidence that there
may actually be increased risk of death from these drugs. But we
have no substitutes. People are not exactly flocking to that market.
In the media, we have an autopsy study of 37 patients with minor cognitive
impairment that became front page news in the Chicago Tribune
which then went on to talk again about cures and about the need
for increased research. At the same time, we see little attention
to the potential impact of Medicaid cuts on nursing home care for
patients with Alzheimer's Disease.
Even though I'm very much aligned with the Alzheimer's
Association in many regards, one can even look there at the main
advocacy organization for this patient and caregiver population.
The old logo for the Alzheimer's Association was essentially
two people standing side by side and the slogan is "Someone
to stand by you." Now that may not be very catchy or raise
a lot of money but it was a lot about what the ethos of the organization
The new logo, I think, and maybe you know more than I do, Peter,
looks like to stylized connecting neurons and the new slogans included
things like "Our vision, a world without Alzheimer's."
They have a new program that's featured prominently on their
website entitled "Healthy Brain Aging" named "Maintain
Your Brain" and there was a recent conference on prevention
So I think the focus in many of these different areas in public
policy have really shifted to the well elderly, the people who have
mild memory impairment and things about prevention and cure and
we're getting precious little attention to the people that I
care for and care about. I think that anything that the Council
can do to refocus the public discourse and policy debate on these
issues would be really important.
On one hand, I think we need to avoid the extreme that people
are talking about in terms ending up with people who get all kinds
of treatment just because it's available, effective, perhaps
not burdensome, I doubt it won't be expensive, and the other
extreme of denying aging, death and dementia. I think that there
is a middle ground that we can be aiming for, both in terms of viewing
aging and dementia and end of life, of a place where comfort and
company should be the priority, and where we're guaranteeing
basic needs for patients with dementia rather than guaranteeing
them access to an ICU bed.
I think later on I would be happy to talk about some of the other
kinds of specifics that I think are very policy-oriented where we
can get away from some of the disincentives for end-of-life care
and realigning them towards matching up but would be financially
correct with what would be best for our patients.
I think that needs to be done and it needs to be done together
because I don't think you can rely on the virtue of families
and physicians indefinitely. We need to align the incentives and
the system to be able to make it happen more readily rather than
to make it an exception. Thank you.
CHAIRMAN KASS: Thank you very much Our usual custom when
we have two speakers is to allow a few minutes for questions of
clarification, not for full discussion. So we'll save the full
discussion of the two papers together, but questions of information
or clarification from Greg Sachs.
PROF. GEORGE: Leon, could I just ask the doctor to say just a
word more about that very interesting shift that you talked about
near the end which was exemplified by the change in the logo and
the slogan for the patient's advocacy organization. Can you
tell us what's going on behind that? What's the politics
DR. SACHS: I can tell you what I surmise.
PROF. GEORGE: Yes please.
DR. SACHS: Because I haven't been part of those conversations.
From talking to a communications company that was actually consulting
for the American Geriatric Society, they picked the Alzheimer's
Association as a successful case example for us to look at.
In fact, by doing that, the shift in the image was one of more
hope. Rather than someone to stand by you and sort of the solidarity
with people who are suffering, it was to raise more hope in the
minds of the public so as a more positive image. It actually has
translated into greater donations from the public, more engagement
of people as members of the Alzheimer's Association and has
actually allowed them to command greater leverage, I think, in the
marketplace in terms of the kinds of things they can do with the
other kinds of companies.
When I say at cocktail parties, "What do you do?" "Death
and dementia," people run away. So it's the same sort
of thing that, I think, the idea of having much more hope and some
of it is real in terms of the prospects for more effective therapies
is what's driving that. But I think it also has been one in
which people really don't want to have the image of the end-stage
patient, the patient where you're dealing with nursing homes
and a lot of those issues be the sort of thing that is out there
for the public.
PROF. GEORGE: Especially in view of your suggestion that
the Council might be able to do something helpful here, I gather
that you think that it comes with some serious baggage and creates
problems for the kinds of people, as you say, that you care for
and care about. Can you just say another brief word about how this
has impacted negatively your patients?
DR. SACHS: Sure. I think that when you look at the kinds of
treatments that we have available or even the things that are in
the offing, the amount of benefit that we get from drugs that are
available for Alzheimer's Disease for example are really modest
at best. So the kinds of hope though, the hype, that`s come with
that, has been one in which people really are expecting medicine
to make a really dramatic difference.
They expect, I've even had people ask about things like stem
cells which are pretty far off in terms of actually treatment, I
would say, for Alzheimer's Disease. I think it's falsely
raised the hopes of many patients and especially of many families
who often get very desperate when they're facing this sort of
picture of decline so that they may grasp at straws. I think it
makes it harder for people to even see Alzheimer's Disease as
something that's a terminal illness that is eventually fatal,
something for which a palliative care approach would be appropriate.
PROF. GEORGE: Thank you.
CHAIRMAN KASS: Dr. Rabins please.
DR. RABINS: First, I would like to thank the Council both
for inviting me here and also for focusing on this topic. I've
been interested in this for a long time and I think it's an
issue that has been unappreciated and your focusing on it, I hope,
will get people to think more about it in a thoughtful way.
I put my slides together before I had a chance to review the draft
and it turns out that in fact some of what I was going to say you
already know. So I will be able to go through it quickly.
But what I actually wanted to do first was to touch on a few of
the definitional and epidemiologic issues from a caregiver's
point of view rather than societal, second, talk a little bit about
caregiving and the emotional impact that it has on the caregivers,
and then finally, to talk a bit about my views on some of the ethical
issues, particularly some that I think are not addressed directly
in the report and I hope that you would able to perhaps pay a bit
more attention to it.
This is in a sense my disclosure statement. Obviously people
bring values to any topic like this and I just thought I should
say that these are a few of the things that are important to me
and have shaped my views on what I'll be presenting here today.
Again, as everyone knows, dementia, we're talking about adult
onset of multiple cognitive impairments in individuals who are normally
alert. I want to again repeat what Greg said and that is that
people still think of these diseases as primarily memory disorders
and in fact I think the irony here is that people who have memory
problems don't come to attention. I'll show you that in
a minute. So this second criterion I think is crucial and that
is that ultimately all the cognitive functions are affected and
it's usually the non-memory impairments that bring people to
attention and raise, I think, many of the particular difficulties.
Again, Alzheimer's Disease probably accounts for more than
70 percent of cases altogether because about half of people with
vascular dementia also have Alzheimer changes in their brain and
about half of people with Parkinson's dementia have Alzheimer's
Disease in their brain. But I do think it's worth pointing
out that each of these different illnesses, and these are the four
most common neuro-degenerative diseases, have different symptom
patterns and again, it's the non-memory symptoms that are often
For example in fronto-temporal dementia which only affects about
five percent of cases overall, the presenting symptoms very often
are changes in personality, behavior and social comportment. Intriguingly,
these individuals often have relatively normal memory. But a family
member trying to care for someone who at age 60 starts hitchhiking
for the first time, starts picking up children in a mall, total
strangers and then gets arrested, you can imagine the impact that
those kinds of behavior changes have without significant impairment
in memory. So I just think it's important to say that diagnosis
does make a difference even when we can't cure them.
Again, you know the symptoms of Alzheimer's Disease. What
I did want to emphasize again was that by definition every patient
with Alzheimer's Disease has a memory impairment. In addition,
they also need to have other problems in what's called praxis.
That is doing everyday activities and that means things like dressing
yourself, filling out your checkbook, driving a car.
See there, agnosia, really addresses perceptual problems. Alzheimer's
patients do not see the world the way we do. They can't see
the whole of things but also they have difficulty recognizing the
familiar. So this leads them to say things and experience things
such as "this isn't my house" or "you're
not my wife." Again, from a caregiver's point of view
to hear that statement, I think, is understandably devastating.
What's intriguing is that sometimes when the person speaks,
when the caregiver speaks, the patient can recognize them. That's
why this is not a memory disorder per se. It's an inability
to perceive the world accurately. This is the kind of information
that I believe is useful. It doesn't cure the disease. It
doesn't change anything. But it's this kind of knowledge,
I think, that can help care providers understand what's going
on and change something that sounds totally crazy, "What do
you mean this isn't your house? You've lived here 40 years"
to appreciate that it's part of the disease itself and that
sometimes changes the interaction.
The third symptom is aphasia, language impairment, and I think
most people have known someone who has had a stroke and developed
language impairment. Alzheimer patients develop the exact same
kinds of language impairments. But the reason that's particularly
crucial to the discussion today is that part of decision making
involves having a conversation with the person. And when an individual
has language impairment, that is they can't totally understand
what's being discussed or they can't express themselves,
the language impairments of Alzheimer's Disease get in the way
of having a meaningful conversation sometimes, even when the person
might have other abilities.
The one other point I wanted to make was that Alzheimer's
Disease is a relatively slowly progressive dementia and, in fact,
most people don't come to the attention of their families or
a clinician until they've been ill for two or three years.
Why might that be? Again, in the document, you talk about the
staging and it turns out that each of these stages, and again these
are really for our convenience, is about three years in length.
It's not generally until people start developing the second
stage of the illness, the language problems, the inability to do
self-care, the inability to perceive the world correctly, that other
people notice there's a problem.
My guess about this is that if you're retired, you live a
relatively routinized life, you don't really need to learn too
many new things. You do things the same. But when you get lost
in the neighborhood, when you stop paying your bills, when you don't
file your taxes, you come to family's attention. So people
are often ill for several years and it's not until the second
stage even today that they often come, I think, to our attention.
And I think that's important to keep in mind.
Now Greg has made this point, but I want to touch on it for a
bit. I'm a psychiatrist and I got interested in these diseases
actually when I was in medical school. I had an interest in psychiatry,
but I was rotating on the neurology service and started to see that
people with brain diseases had what were traditionally considered
psychiatric symptoms and that's how I personally got involved
in this field.
But one of the first studies that I did almost 25 years ago now
was to interview 55 consecutive families and just ask them what
kinds of problems are you having. Now the main thing I wanted to
impress you with here is how long this list is. We ask people both
the prevalence, how often, does this occur and you can see the numbers
are pretty high and are they a serious problem for you. If you
look at problems, catastrophic reactions refer to emotionally explosive
episodes, most families report those. Suspiciousness 63 percent.
Making accusations, 60 percent.
Greg mentioned a patient who made accusations towards a spouse.
In fact, Dr. Alzheimer's original patient presented with two
problems. The first was that she had always been an excellent housekeeper
and her ability to cook and keep the house up had been failing.
Remember that's second stage disease. And second, she was
accusing her husband of infidelity, a delusion of unfaithfulness.
So these symptoms are part and partial the disease. They are
not part of the definition of it and I think that's appropriate.
These are disorders of cognition. But I think it's very important
to appreciate that much of what caregivers struggle with are symptoms
that we would traditionally think of as behavioral or psychiatric
or I prefer the term, neuropsychiatric.
I also want to make the point that I'm probably not quite
as pessimistic as Greg, maybe because this is how I focus my clinical
work. But I, in fact, think that these symptoms are often more
treatable than the cognitive symptoms. I agree with Greg actually
that the drugs that we have are limited but I do think there's
good evidence that non-drug treatments for many of these symptoms,
change in the environment to address the patient's needs, actually
can diminish the impact of these symptoms. So that recognizing
and I would hope that the report might just pay a bit more attention
to this, that between 60 and 90 percent of patients have significant
neuropsychiatric symptoms and we can help patients and their caregivers
by treating those. I think that's an important positive point
to make. Again, it's a very long list here.
Now people had actually criticized that work saying, "Rabin,
you're a psychiatrist. This is an ascertainment bias. Either
you're looking for it so you find it or people come to you because
you're a psychiatrist."
So fortunately, my colleagues, Constantine Lyketosos and John
Breitner, have done a very important study in Cache County, Utah.
This is a county in Northeast Utah that has the longest life expectancy
on average in the country. They have been able to do an epidemiologic
study where they've interviewed more than 85 percent of the
65-year-olds in this county and have followed them longitudinally
since 1996. So these are mostly people living at home and these
are the prevalence figures that they've found. Twenty percent
have delusions. This is at one point in time when they did a single
interview. Fifteen percent hallucinations. Twenty-five percent
agitation. Was essentially wandering 15 percent. But again, this
is just to give you an idea of what caregivers are dealing with
on a daily basis. It's often at this behavior level rather
than "Oh, he's forgetful." Again, I do think we have
some treatments to offer that.
Finally, I just wanted to touch on just a few other points, some
of which are made in the report. First is, and Greg mentioned this
and I think this is crucial, that 75 percent of people with Alzheimer's
Disease are unaware that they have a significant problem even at
the beginning of the disease and this is absolutely crucial in thinking
about the ethical and moral dilemmas because you can't sit down
and have a meaningful conversation with a person about what they
would want when they have no insight into the fact that they're
Now 25 percent do have insight. As the disease progresses, ultimately
all individuals lose that insight. But even at the very beginning
as Greg said, the majority of people don't. This is more my
belief than backed up by research. But I believe this is actually
a peculiarity of Alzheimer's Disease rather than other dementia.
You don't see this in patients with Huntington's disease
to anywhere near this extent at the beginning of the disease. And
even patients with vascular dementia have much more insight.
So I think it's very important to appreciate that the caregiver
is struggling caring for someone, and as I'll say at the end,
making decisions with and for someone who can't participate
actively even in the beginning. And I think that's a tremendous
source of challenge and difficulty for the caregiver.
A second point I wanted to make is that about two-thirds of people
with dementia and Alzheimer's Disease live at home. So about
one-third are in long-term care and these numbers have not changed
since the mid 1980s when people started counting. So that nursing
homes in a sense really are in large part dementia care facilities.
However, there's been a very dramatic change in this country
in long-term care. In 1980, there was no such thing as an assisted-living
facility. A whole industry has grown up in the last 15 years called
assisted living. Probably about one million or so people now live
in assisted living and studies just completed by Adam Rosenblatt
and Constantine Lyketsos and I'm part of that as well show
just as in nursing homes about two-thirds of individuals in assisted
living have dementia.
What's intriguing is that these facilities were built and
the whole industry was established on the idea that they would treat
frail elderly individuals which is, I think, a very good motive.
But what's happened intriguingly is that as states have stopped
increasing the number of nursing home beds, there are fewer nursing
home beds today than there were in 1985, primarily because states
don't want to license them because of the economic issues that
are discussed in the report, this whole industry has built up which
is a private pay industry. But just because we haven't increased
the number of nursing home beds doesn't mean the institutional
care has gone away. Now we have one million people or so in assisted
living and two-thirds of them have dementia.
What's happened is that all the mild dementia cases, relatively
mild, are in assisted living and what's happened in nursing
homes is that they now treat the very advanced patients. So that
nursing homes have changed very dramatically. They used to be called
retirement homes like 25 years ago. When I started, they were called
retirement homes. Now the vast majority of people there have dementia
and 65 or 70 percent of people with dementia die in nursing homes.
I think that's very important to keep in mind.
Finally, I did want to mention that I'll come to the research
I'm doing at the end but you can measure quality of life in
people with dementia. At least, I believe you can and that we're
able to do it and that even in people with severe dementia, they
can have a positive measurable quality of life, but that quality
of life in advanced dementia is interfered with by not just disease
severity but by the presence of pain and by inactivity. Pain and
inactivity are two things that we can address. We can't change
the disease severity but even in advanced disease, we have some
things to offer people and I think that's important. So I just
think it's important to say that there's a range of quality
of life in individuals with dementia and with good care, it can
be improved. I don't want to be a Pollyanna but it can be improved.
So what we now have in a sense is a de facto dementia care system.
We have nursing homes and institutional care on one extreme, we
have the majority of people being taken care of at home and we have
a whole variety of services that are being developed and it's
a challenge to get them sometimes but that whose goal is primarily
to try to keep people at home as long as possible. I do think that
one of the important research agendas for the future will be to
see whether we can demonstrate first that these are effective in
improving quality of life and second, if they are, if they can keep
people at home longer and that has not been demonstrated and I think
that's an important research issue.
Now to switch to caregivers, again things that you already know,
about 80 percent of caregivers are women. I've already said
that about two-thirds of Alzheimer's patients and dementia patients
live at home. But the carers of the people with dementia, they
are women at all stages. That is at home it's 70 to 80 percent
women. In long-term care, my guess is it's 90 percent women,
if not more.
We have recently found and several other groups have found the
same thing. If you look at who are making the end-of-life decisions
for the person with dementia, in our study it's 70 percent women,
half spouses, a quarter daughters and daughter-in-laws and about
ten percent nieces interestingly enough. So throughout the course
of this illness, it's predominantly women who provide the care
and decision making.
I also though think it's important to point out, and I think
Greg has mentioned this as well, that long-term care and nursing
homes are an essential part of a dementia-care system. Ethel Shanas
who is a socialist, I think, at Northwestern in the 1970s made the
point that it's a myth that Americans dump their relatives in
long-term care and I think that's just as true today. The evidence
for that is if you look at people with dementia who's in long-term
care, who is at home. By far the strongest predictor of being in
long-term care is the severity of the disease. The most severe
people end up in long-term care. But in addition, people with greater
psychiatric/neuropsychiatric symptoms are in long-term care and
finally, people who have fewer available family care providers.
So I would hope that the report might be able to be a bit more
positive and perhaps it is already in saying that as a moral society
we want to develop a care system that meets the needs of people
and as long as we have diseases like this that severely impair people,
we will need long-term care. We just want to do it as good as we
can and the report does say that. But perhaps that could be highlighted
a bit more.
Then a few other things about caregivers, there's an extensive
literature that's been developed over the last 30 years that
show that people who care for individuals with dementia have about
doubled the rate of emotional distress as similar people in the
community. So if the standard rates of emotional disorder in the
community are 15 or 20 percent as some epidemiologic studies show,
about 40 percent of caregivers have significant emotional distress.
Of course, the other side of that is 60 percent don't. I
think one has to keep in mind that clearly being a caregiver increases
the likelihood. In one of the studies that I did a long time ago,
we looked at positive mood and we found that about one-third of
caregivers had a positive mood above the mean of the population.
Of course, it should be 50 percent above and 50 percent below the
But I think it's a mistake to be totally focused on the negative
aspects of caregiving. And when you talk with caregivers, they
will tell you the positive, many will tell you, both the positive
meaning they will get from providing it and the negative. As did
the cab driver who drove me over today asked me what I was doing
and from National airport to here, we talked about positives and
negatives of the care that he was able to provide. So I don't
think we want to dwell too much on the negatives.
But there are some surprises when you study caregivers. This
is a study that we did a number of years ago following caregivers
for two years and these are individuals who are caring for individuals
with dementia, the closed circles here, and individuals who have
metastatic or disseminated cancer. We found very few emotional
differences between the two groups.
But what I had not predicted was that over two years there were
not increases in the emotional distress. That is as the disease
got worse our prediction was that there would be more emotional
distress in the care providers. We found that either it stayed
the same or actually went down over two years. I think that's
The one difference that we found between cancer caregivers and
Alzheimer's caregivers was over here and that is that Alzheimer's
caregivers reported more guilt than cancer caregivers. I'm
going to come back to that at the end because I think that relates
to the ethical challenges that people face.
One other point I wanted to make about caregivers is that not
surprisingly if some caregivers are not doing well emotionally and
others seem to be doing relatively well, we ought to be able to
identify predictors of who's emotionally distressed and who
is doing relatively well. As you would predict, the severity of
dementia does correlate, albeit modestly, with the level of emotional
distress. This is a multiple regression so these are all independent
contributors to emotional distress.
We found that caregiver personality correlated with longitudinal
distress, not surprising. The way people have dealt with other
stresses in their lives predicts the way that they will deal with
this difficulty. And that caregivers that tend to be more flexible
tend to do a little bit better. We also found though on the positive
side that the strongest predictors as you can see of doing well
are (1) having a larger number of social supports and (2) saying
that your spiritual or religious beliefs explain this situation
in some way. The people who say yes to that statement do much better.
So again, I think this just points out that there are lots of things
that we can be doing to help caregivers do better in this challenging
I would conclude from some of these data that first adaptation
and resilience is actually the norm. Again, caregivers don't
get worse over time. They actually adapt to what is a very challenging
situation. Frankly, I think this is going to be true of any stressful,
traumatic situation. If we went out and studied the survivors of
the hurricane in New Orleans and Mississippi, I think we would find
a whole range of emotional responses and that many people will be
emotional causalities but many will do well and be surprisingly
The final point I wanted to make about caregivers is that there
are now more than 30 studies to show that directly intervening with
the caregivers, either providing information to them, education,
or providing emotional support, can improve the emotional well-being
of the caregiver, 30 studies. It's much more powerful than
the cognitive enhancing drugs. I don't know if you would agree
So again, just to emphasize, there is a lot that we can do. We
can't fix the biology but we can help caregivers with this high
level of emotional distress.
The last thing I wanted to touch on were some of the ethical challenges
and this really came from this chapter in the book. What I wanted
to point out was that what is emphasized in the report now are really
the bottom two issues. That is the challenges of medical decision
making for this advanced patient and a bit about feeding tubes,
not really all that much.
But I wanted to point out that there are a large number of other
issues that I think that the report doesn't address and I do
think at least need to be mentioned. Actually one of the things
that I included here was the day that I was putting these slides
together I got an email from a child of one of my patients. She
has given me permission to reproduce it. So it's in the packet
and I think if you read this, it's a very sensitive portrayal
of a challenge that this family is facing.
It turns out that about 20 percent of people with dementia live
alone, usually because that's what they want to do. Their spouses
die. This woman is still able to live alone with support, a lot
of support, from her two children because that's what she wants.
But what her daughter lays out in that email is that, by the way
the patient was a very successful business person, somehow she got
one of these notices in the mail that she won a lottery and all
she needed to do was give them some money. Once she got on one
of those lists, she now gets many of these a week and her judgment
is impaired and what they discovered because she was doing her own
checks was that she had sent thousands of dollars to these things.
The dilemma that the daughter lays out is how do we deal with
that. Do we stop the mail delivery at the house which seems to
be a pretty intrusive thing for an independent person? And we would
do that because we would want to protect her. I think she is asking
is it morally justified to do that. But then she goes on to say,
"But, Dr. Rabins, I can see this is only the first of lots
of similar challenges. If we say yes to that, we're going to
have to say no in a sense to many other things and that's going
to be very difficult."
These kinds of problems come up all the time. I get calls and
I give a lot of public talks. Every talk I give, two or three people
raise their hand and say, "My mom or dad is living alone"
and so and so and "Now that I've heard your talk I know
that he has early Alzheimer's. He denies he has a problem.
I can't get him to the doctor. What should I do?"
Again, I believe the challenge here is the person doesn't
have insight even at the beginning of the illness. So it's
not that this individual is making an informed decision that they
don't want to be medically evaluated. They don't want to
know if they have a problem. It's that because they can't
appreciate it then the challenge in the sense, the beneficent challenge,
to the family is to say "Should we `force' him or get
him to do it in some way?" That's an example.
Another example maybe I could touch on, and if there's time
for discussion we can talk about more, is the third from the bottom
and that's the issue of lying. Many people with these diseases
say things like I mentioned like "This isn't my home,"
"You're not my spouse." But even more important,
more difficult sometimes, is that they have a pattern when which,
and it's often every afternoon, they'll say, "Mom is
coming to get me" and they start getting agitated, "Where
is she? I know she's coming to get to me." Of course,
this is a 75- or 80-year-old individual.
And you can start to see that the challenges are (1) do you tell
the truth. Do you say, "But your mother's been dead for
30 years" and that would be truth-telling. I think most of
us would hold that as a very high value. But in this instance,
this serves no value for the sick person. Telling her the truth
or him the truth doesn't help them. Why? Because he cannot
grieve that loss. Every time you say, "But your mother's
dead" he's never heard that before and has an acute grief
response. So that's not helpful.
And sometimes you can distract them. Sometimes you can say, "Your
mother was one of the nicest people I know" and you get off
in a conversation and it goes away. But many times, the most effective
thing to do is to lie, is to say, "Don't you remember mom
went to the ocean? She's going to be back on Monday."
"Oh, yeah. I forgot." Then they're fine. Again,
is that morally justified?
I think you can see that even from the beginning of the illness
there's just a whole range of challenges like this. This goes
back to that finding that we had on guilt. I believe, and this
is really just a guess, the reason that there's more guilt in
Alzheimer's caregivers than in other caregivers is that they're
dealing with these kinds of issues all the time and it changes the
relationship in part that they've had life-long with the spouse,
a parent and uncle, whatever.
I do think it's important to say that Elaine Brody who was
doing a lot of this work 25 years ago made the point and I think
it's important that we should not call this a role reversal.
This is not that the children are now the parents and the roles
are reversed. That relationship is unchanged. It's still a
parent/child or spouse/spouse relationship. But the responsibilities
have changed and so the decision-making responsibility falls then
to the surrogate rather than that individual. I think it's
that conflict between role and responsibility that's such a
huge challenge for families. I would hope that you could highlight
that a bit more in the report.
Finally, if I can just very quickly run through some of the research
that I'm doing now. We've just finished a longitudinal study
of 125 individuals with late stage dementia. Ninety-one of them
died during the study and what we're focused on is what medical
decisions are made. But more importantly, how are they made and
how does that impact the family?
And we're not really even done entering the data but I ran
a few things just for this meeting. We had a very high percentage
of individuals who had advanced directives in the study. That's
not surprising because the subjects were ascertained in nursing
homes. So when they went in, they were offered one.
But I wanted to point out that in addition to the challenges that
are mentioned in the document, you can see that there's a real
difference in use by race and sex and that is that another reason
that these are not the sole answer is that they will be differentially
used by different groups of people. Individuals who are better
educated, more intellectual, think more about things are much more
likely to use these documents. So if we rely too much on them,
we will also exclude a large number of people
And I agree with Greg and I think the conclusion of the document.
They have a role to play and in fact, we have intensively interviewed
in a qualitative way one-third of these individuals and of those
individuals, the third who had had both an advanced directive document
and said that they had extensive discussions with the person, they
said that the document had helped get the discussion going. That
was the main value of it. So as you conclude in the report, I think
that is a value of them but we want to somehow get society to appreciate
that these issues need to be discussed.
Then finally, I did just want to say what kinds of decisions are
surrogates actually making since this is the bulk of your report.
This looks at the surrogates of 73 of the individuals who died during
our study. So this is in the last six months of life. Half of
them faced a decision about hospitalizing someone. About one-third
of them faced the decision about placing a feeding tube and in our
region, feeding tubes are actually very rarely used. You can see
that a high proportion of people decided against hospitalizations,
feeding tubes, ventilators. On the other hand, there were things
that people decided in favor of.
Now we also looked at were people in a sense satisfied with the
decisions that they made and how difficult were they. So I've
broken things down and these are in a sense decisions to do something,
to treat, and you can see that most people said when they decided
to do something that wasn't so hard and most of them were pretty
satisfied with the decision. But when people had to make decisions
to limit treatment, so I've even included comfort care here
as a treatment-limiting type of decision, people struggled much
more with them. They found these more difficult on average and
they were less satisfied.
Now I don't think that's bad. I actually think that this
is what we would hope. When people face difficult decision, they
struggle with them and they may never be totally satisfied with
that decision. But they made the decision, and I think as the report
emphasizes, someone has to make these decisions. But we should
not be holding out the idea that any approach whether it's a
discussion or an advanced directive is going to make everybody feel
good about making hard decisions. I actually think the report does
a very nice job of laying that point out.
I'm sorry I went on so long but I will stop there. Thank
CHAIRMAN KASS: Thank you very much. Could we get the lights
please at your convenience? Someone? Thank you. Thank you both
for very lucid and thoughtful and helpful presentations. The floor
is open for discussion of questions or comments to either Dr. Sachs
or Dr. Rabins. Frank Fukuyama.
DR. McHUGH: I just have a question for both of you combining
that 90 percent turnover in the professional caregivers and then
the data about the emotional distress and so forth. I was in Japan
over the summer and there was a front page article about how the
Japanese government was now importing all of these nurses from the
Philippines and giving them training to deal with their aging populations.
We're never as organized as some other countries.
I'm just wondering whether a higher degree of training, more
economic incentives, some kind of certification, whether any of
these would materially effect. What is the labor market in that
sector look like? My impression, for example, is that since it
is close to minimum wage like a lot of other minimum wage jobs,
a very high proportion of minorities represented in it. Can you
just say something about that, either one of you?
DR. RABINS: I can maybe and Greg can as well. I would make one
point which is again although I agree with Greg on those turnover
figures, again there's a wide range of turnover in facilities
and there's a little bit of research on looking at what are
the low turnover facilities like and what are the high turnover
facilities like and it is true that the low turnover facilities,
the pay is better.
But I think in fact the stronger difference is that the morale
is much better. I think that in the facilities that do better there's
a real effort to, in a sense, professionalize these individuals.
So I think that's part of the solution. I do think that this
is very hard work. I mean this is not just flipping a hamburger
at McDonald's. This is skilled labor in my opinion and I do
think that improving the pay would make a big difference. But I
think if we could change the attitude, partly of our society, and
say these are professionals and this is a needed part of our healthcare
system, I think that would help and then professionalize it through
recognizing that there's a real domain of knowledge that these
good caregivers have, I think those would all help.
DR. SACHS: I would agree with that, but I think if you look at
many nursing homes in areas that have a large percentage of Medicaid
patients, you'll find things like in one of our nursing homes
a lot of the nurses are Filipinos. It hasn't been because of
some concerted effort to go over and bring them. But it's de
There are big differences in facilities and I think that some
places, probably the kinds of places that people in this room would
have their relatives in, are going to be the places that are going
to be more private pay, higher standards, more involved in the family
and are more likely to be able to sustain that kind of staff and
have that good morale. I think for a lot of other facilities they're
trying to just get by and actually make their budgets in an era
in which they're getting less money and having to provide care
for sicker patients and still paying barely above minimum wage.
I think when people have looked at things like increasing the
hours of training required and things like that there's been
a real concern about whether or not you're going to be driving
people away from the position altogether given how hard it is and
how low paid it is.
DR. RABINS: I might add. I think this is an excellent example
of a topic where research, I think, actually could answer the question.
It's not very sexy. But supporting, engaging, the NIA to research
this kind of question would be very positive.
DR. FOSTER: The other issue just to answer that specifically
that I've just seen in a controlled situation where a very strongly
supported church-oriented nursing home was present, the change
of the director made a huge difference. This is a nursing home
that had the first Alzheimer unit in the State of Texas and so forth,
but the leadership is absolutely critical. I mean the new leader
really loves these patients and so forth and so on and he's
just transformed and the turnover has just dropped.
So it's like most things whether it's a department of
geriatrics or whatever. The leader is the critical person here,
not just the people that work under, I think, There's really
a dramatic change when you get the leadership. That's where
the morale really goes up.
DR. RABINS: Right. I think that's the point to make that
the leadership sets the tone and when it makes the caregiving the
central act and shows people that they actually make a positive
contribution to the quality of life for those people that trickles
down to every staff member and makes a huge difference.
DR. SACHS: But the pool of people who are going to be those leaders,
I mean there's a national nursing shortage. Geriatric nursing
practitioner programs are struggling to attract people just the
way we are in geriatrics and in general, these are positions that
pay less well than hospital positions. So you have a similar sort
of problem that when you're fortunate to get people who have
those sort of qualities. But to provide that for a nation that's
facing this sort of number of people aging, we have to do something
other than just hope that it's going to change.
CHAIRMAN KASS: Gil Meilaender and then Rebecca Dresser.
PROF. MEILAENDER: We around this table, some of us like to argue
with each other and I'd like to see if I could infect you with
that spirit just a bit. And what I mean by that is this. Though
clearly you agree on many things, just a very rough categorization,
I would say that the tone of Dr. Sachs' presentation was a little
more pessimistic and the tone of Dr. Rabins' a little more optimistic,
granting that those categories don't, they're very broad.
I was wondering. Dr. Sachs, where is Dr. Rabins a little wrong
or off-base and, Dr. Rabins, where is Dr. Sachs a little wrong or
off-base? Just take your own emphases and I'd like to see you
react to each other in that way.
DR. SACHS: I went to the University of Chicago. So I like to
argue. I would say that part of that has to do with the tone that
I took deliberately was to be a little bit pessimistic to help try
and motivate some of the kinds of attention and change that I think
is necessary. There are many stories of heroic kinds of care that's
being given. I didn't talk at all about the kind of model that
we've done with funding from the Robert Wood Johnson Foundation
to do palliative care for people with dementia. I think there are
models out there and there are lots of positive things that can
But the kind of demographic imperative that we have and how unprepared
we are, I think there should be people sounding an alarm about this
and it's not that what he said is not true or that these aren't
good examples and that there is a lot that can be done but many
of the examples of, like my program, your program and the kinds
of things that can be done for caregivers are rarely done outside
of funded studies, outside of special kinds of situations where
they are academically affiliated, VA affiliated, other kinds of
what I would call really top-of-the-line kinds of programs.
So yes, we can do that. But to think back to when you're
talking about the kind of doctor that you want or the kind of doctor
that's out there, the doctor can write a prescription for a
cholinesterase inhibitor. The doctor who is seeing patients every
eight minutes is not going to be equipped to do that sort of counseling
about caregiving. He doesn't have the staff. Medicare doesn't
pay for the social-working nurse practitioner to provide that kind
of comprehensive care. So there's a lot of stuff that we already
know we could do that we could do better, but I don't think
we have the infrastructure, the systems or the incentives in place
to make that happen more regularly for the vast number of people
who need it.
DR. RABINS: I guess I should disclose that perhaps since my psychiatry
training was under Paul McHugh, I both love to discuss and challenge
people but tend to be on the optimistic side too I think. But I'd
probably if there was one place that I would disagree with Greg
is I'm a bit more optimistic about biological advances. I don't
think these are going to ultimately change the issue, but I do think
that animal models suggest that there's a real possibility that
if this is an amyloid disease, if Alzheimer's Disease is an
amyloid disease, that some of that burden may be removed from the
brain, but that perhaps that will alter the neuro-toxicity of the
process. So I think that may happen.
But what I believe the implication of that is is that what's
happened with Parkinson's Disease is a very good model. L-dopa
has revolutionized the treatment of Parkinson's Disease and
now there are a whole other number of dopamine agonist medications.
They have probably doubled the life expectancy of people with Parkinson's
Disease (1) but (2) they have significantly increased the number
of years of good quality of life. However, they haven't diminished
the number of years of bad quality of life at the end because people
live much longer. So the severely disabling aspect of Parkinson's
Disease unfortunately, the brain keeps deteriorating.
And I think what may happen in the relatively near future is that
in fact we'll be able to modify the course of Alzheimer's
Disease and we will actually see a drop in the number of people
in the middle and later stages for awhile. Then after 15 or 20
years, of course, when it gets back in equilibrium, we'll be
right back where we are now.
Second, I do think that even if we could make a dramatic difference
or a preventive difference in Alzheimer's Disease. I do think
that the other great medical challenge that's barely been addressed
is the issue of frailty in the elderly. I mean that people who
don't have dementia that most individuals by the time they're
90 have multi-organ failure. This is mentioned in the report.
So I think in fact what will likely happen is even if we make
a big difference in Alzheimer's, something else will in a sense
come up. But what I do think is it will be a lot later in life
and I think that the 70s and the 80s, in fact, many more people
will have healthy lives. But we will have as many very debilitated
I do think that the ethical challenges will be different because
I really believe that as the report emphasizes that the cognitive
disorders have a rather unique aspect of ethical and moral decision
making because they remove the ill person from the conversation.
That doesn't happen, I think, with the nondementing illnesses.
So I think that will be a change. That may be a place that we disagree.
One of the reasons that I feel that supporting research is so
important is an optimist I guess. I think that things can be changed
and one way to change them is to have public fora like this. Another
way I believe is to have research where you can show people this
is cheaper than this but it's more effective. This is good
care and this is bad care. And I think that adds an aspect to the
conversation that is very powerful.
You'll never convince everybody, but I believe data can convince
a lot of reasonable people that there's a right way to do things
and a wrong way or a less right way. So I'm an optimistic in
that way, too and maybe we both are.
DR. SACHS: In different ways, I guess because I think frailty
is something that's at risk of becoming just like Alzheimer's
and minor cognitive impairment. There are people in basic research
in aging and geriatrics and gerontology who think that's sort
of the next target. So you find that there are certain genes and
interleukin-12 is elevated in people who are frail and then you're
going to get drug companies who are going to work on an expensive
So we're going to be doing all sorts of things like that instead
of providing basic home care needs, supportive care, long-term care
and palliative care because all the economic interests are for drug
companies for making profits to do those sorts of things. The researchers
have a very great interest in being funded to do their work and
the kind of research that you do, that I do, that other people should
be doing in this area isn't what gets funded.
DR. RABINS: I maybe have one more thing to add and I agree with
that, Greg. I would just say that I happen to believe that overall
this is very moral society and again one of the reasons I was very
glad that this Council is addressing this issue is that I believe
that if we can continually appeal to that side of this discussion,
things can get better. So I think biomedicine is part of it. I
think this part of discussion is part of it. And I think making
the points that Greg is making that we need to provide compassionate
care for very ill people as you say in the report is absolutely
crucial and we can do much better.
CHAIRMAN KASS: Rebecca Dresser please.
PROF. DRESSER: I would like to ask you both about, I guess, the
component of this that interests me the most which is getting better
at ascertaining how patients will experience treatment interventions
and continued life in that circumstance. I guess, I'm not a
physician, but my sense is there's under-appreciation of the
way that dementia affects how people experience various things even
things like a shot, but certainly a lot more ongoing things.
And I thought Dr. Sachs, Greg's article, in JAMA with
the case example of the woman, I forget the name of the medication,
but it was bone strengthening.
DR. SACHS: Bisphosphonate.
PROF. DRESSER: Right, bisphosphonate, how that didn't work
with her and that's a treatment that I think an ordinary person
would say, "Oh well. That's simple. No big deal."
So I guess I would like you to talk about those things and also
in the Journal of General Internal Medicine, Greg, you talk
about two cases, one where a family chose tube feeding and IV antibiotics
and one where a family didn't and the patients were similar.
I wonder if you thought one was better for the patient than the
other or they were both good care in a certain sort of way.
DR. SACHS: I'll start with the last one first. I think when
I was younger I would have been much more upset at and resistant
to participating in the care of a patient who had the repeated hospitalizations,
the tube feeding and the IV antibiotics over so much time. I would
have probably felt like I was inflicting more suffering upon that
But having worked with families with, as those two cases indicate,
a range of feelings about how they view the effect of the illness
on the individual, that family in particular, that was still mom.
They were very devoted to her, very much felt like this hadn't
been this great deforming sort of illness and that by doing all
of these things and taking all of this time to get to this point
of choosing hospice that they were really filling their obligation
to her and that felt right for that family and for that patient.
It felt sort of very genuine and reflective of what that family
and patient had been like. So I ended up feeling good about that
case on a level that I think I didn't think that was possible
10 or 15 years ago.
The other family was a very intellectual, high functioning, academic,
professional sort of person and it really was about the life of
the mind. They felt like he had been gone for quite some time.
So it really had to do with a very different view. I don't
think it was in a sense the value of life, but what it was worth
putting somebody through given those circumstances. I think those
stake out a range of options and as you get more towards things
that are more burdensome and that increase the suffering of an individual
or prolong suffering the more I have felt compelled to advocate
for foregoing those kinds of treatments.
The first one about the use of that medication, in particular
of bisphosphonate, the instructions if anybody isn't familiar
with it, you have to take the medicine like that on an empty stomach
when you first get up, drink it with an eight ounce glass of water,
stay upright, drink or eat nothing else for the next 30 minutes.
Now I have patients who are cognitively intact and 70 years old
who complain about that.
So if you can imagine some caregiver trying to get a patient to
do that or even for normal preventive things, doing a prep for a
colonoscopy, that is not something that's easy to do with an
uncomprehending, resistant and frightened patient. Many of the
things that we think of as being no big deal to do to people medically,
people tolerate because they understand it, they see the end, how
it's going to help them, they put up with the adverse effects,
they put up with the pain.
When somebody can't appreciate that and doesn't even appreciate
that they have an illness or why do I need a mammogram, you're
talking about another level of burden that you are inflicting upon
the patient and then trying to get the caregiver to actually put
somebody through that. You're actually adding to their suffering
in a sense. So I think there are ways in which much of routine
medical care should be reexamined when thinking about somebody with
dementia and look through those glasses as whether or not they're
DR. RABINS: If I can take two minutes. When Dr. Kass called
me to ask me to do this, I told him that I wanted to make sure that
the patient with the disease wasn't left out and I didn't
really address that. After I said that, then I thought how could
I possibly even do this and one of the things that I do educationally
is to make teaching video tapes and now DVDs.
It turns out that with a group at the University of Maryland and
the two that I've made this year, one is on end-of-life decision
making and care. The second is on what might it be like to have
dementia. And that might be part of this. So with indulgence,
if I can get this to work, I would like to show this. This is not
a patient of mine. This is someone that was made available, her
name is Shana, through the University of Maryland Geriatric Education
DR. RABINS: And I am sorry. I don't want to take too much
time but I think part of the answer to that, Rebecca, is that you
can empathize with people with Alzheimer's Disease. I think
you can imagine what it might be like as Greg said not to understand
why you need a medical test and even at the end-stage of the illness,
I don't think we can lose sight of the fact that these are individual
people just as these are individual families and so there isn't
one right way to do things. But that we can imagine that things
that for us are not upsetting or frightening would be extraordinarily
That does need to be taken into account. I think sometime both
on the positive side of deciding when somebody's trying to decide
whether they should do something or to not do that I inject that
into the conversation with the decision maker. Sometimes they don't,
I feel I can be a little bit more objective in a sense particularly
if it's a patient that I've known for awhile in capturing
their personhood a little bit.
CHAIRMAN KASS: Diana Schaub.
PROF. SCHAUB: Yes. I wanted to ask a question about one
statistic. You said that 75 percent of those with the disease are
unaware that they have the disease. Is that just because of the
point which diagnosis is made? That it's usually not until
the second stage and would that shift if diagnosis were made earlier?
Then a further question, would that be good? Is early diagnosis
something you want with Alzheimer's? It's certainly good
if you have cancer and we've made a real push for early diagnosis.
This may be related to the question about whether we want to focus
on prevention and cure or whether we are concerned with caregiving.
If we're concerned with caregiving, is a certain obliviousness
until things reach a certain point or not good?
DR. RABINS: Is that good?
PROF. SCHAUB: Is it better for patients and families to know what's
DR. RABINS: I think to your first question there's only been
a little bit of research on this insight issue. But both clinical
experience and a little bit of research that there is available
suggests that this loss of insight is from the very beginning.
That most people never can appreciate that they have a problem.
In a way, I think of it in two ways. One is if your memory is
bad how do you know you've forgotten something because you don't
know you were told it five minutes ago. I think that is actually
part of it.
I think part of it actually gets back to agnosia. I believe it's
neurological inability to appreciate a deficit. Again, the reason
I say that is that you don't see the same rates in other dementia.
Its loss of insight, I believe, is less.
You asked what I think is not only an interesting question but
actually I've just finished another study that I hope will answer
the question of whether early recognition makes any difference.
I'm enough of a skeptic to think that is a reasonable question
and it worries me that $60 million is being spent now to identify
people earlier when we don't have a treatment. On the other
hand, I can understand that if a treatment came along tomorrow we
would want to do it.
So again, my personal belief at this point is that in thinking
about this from a more ethical point of view if there are no problems
I don't see a good reason, a strong reason, to push everybody
to get evaluated. The one justification I actually can see for
earlier recognition of a problem is to get people to have conversations
about the very issues that you're discussing here. I think
most research shows that many people don't have those discussions
until they're faced with an issue. And if we could say "You
have a very mild memory problem and we would recommend that you
have these kinds of conversation," that to me would be a benefit.
I'm not sure that would happen. So I don't personally think
that screening everybody right now is a benefit.
The other thing you asked, is it good that there's no insight,
this probably gets to my own values. I think in the end the answer
is no. I believe that particularly in our society where we think
our medical information is our own, that to not know deprives people
of planning, having conversation. So I think people should be able
to know. I don't know if that's quite the question but
I think it's a tragedy in a way that they don't know and
yes, maybe it's nice that it protects them from the horror of
But people used to say that about cancer. In the early 1950s,
a survey was done in the United States in which 85 percent of doctors
said you shouldn't tell someone they have cancer. Of course,
now you would find 100 percent of doctors who would say you should.
That's a cultural change that hasn't happened in France
or Japan where you still don't tell people directly. So I think
at least in our culture knowing we value that and it's a tragedy
that people don't recognize it.
DR. SACHS: Since I've already been characterized as being
more skeptical or pessimistic, I actually remain worried about the
push for diagnosing people earlier. The U.S. Preventive Services
Task Force when they reviewed evidence for screening dementia, let
alone something earlier like NCI, said that there really was not
evidence currently to favor or really against doing it. We don't
have good screening tools and we don't have effective treatments.
So what they talked a little bit about in their report was being
concerned about that also don't know about the effects of labeling
people and there have been a few studies that have looked at the
impact of giving the diagnosis and some of them in the caregiver's
perception of what having a diagnosis did or did not do and some
cases it had negative impact on people, changed relationships.
They were more likely to end up questioning every sort of little
mistake that somebody made. They were drawn to the negative. So
I think that in a sense it's an empirical question and I'm
eager not to start labeling people unless we have more evidence
or unless they're coming to me for an evaluation.
I have my primary care geriatrics practice and my memory center
practice. People who come who want to be evaluated, we do the evaluation.
My own patients who like the coordinator at the front desk says,
"Oh, Mr. So and So is having problems with her appointments.
She's starting to slip." We look at is she managing okay
and if she's still getting by and has her family support and
stuff, I don't push right hard to make an early diagnosis given
our limited armamentarium.
So it really to me depends a lot on what they're looking for
individually as they come to me. For the policy society-wide, I
think we need to hold off.
DR. RABINS: If I could add one more thing if I may. I totally
agree with Greg. The one instance where I think screening may be
appropriate is when people come into a hospital because we know
that there are very high rates of delirium. The strongest risk
factor for delirium is having an underlying dementia and there's
good evidence that preventing delirium has a huge positive impact.
So that might be the one place where screening might be beneficial.
But otherwise I agree with Greg.
DR. SACHS: I agree with that actually.
CHAIRMAN KASS: We have to stop. We have a session that will
begin at 2:00 p.m. and it is already 12:30 p.m. I want to thank
you both for really just wonderful presentation and forthcoming
discussion. I want to stress my appreciation, Dr. Rabins, for your
reminding us what a small slice of the caregivers' concerns
we have taken up in this report and you, Dr. Sachs, for calling
our attention to the incentive questions and this larger thing.
You said you had things that you'd have to suggest. If we'd
asked you if this were half an hour earlier, I would ask you, but
I might ask you if you wouldn't mind if you would jot some of
these things down to make sure that these suggestions are put before
us as we begin to think of some of the public policy matters and
how to begin to shift some of these incentives in the service of
the better care not driven by these sort of perverse factors, I
think that would be very useful to share around the table. We're
adjourned until 2:00 p.m. Thank you both very much. Off the record.
(Whereupon, the foregoing matter went off the record at 12:30
p.m. and went back on the record at 2:13 p.m.)
SESSION 3: ETHICAL CAREGIVING IN
OUR AGING SOCIETY III: PUBLIC POLICY PERSPECTIVES
CHAIRMAN KASS: Thank you very much. Apologies to our guests
for this tardiness.
We reconvene on a session entitled "Ethical Caregiving in
our Aging Society: Public Policy Perspectives." We move in
this session from clinical practice to public policy. Once again,
we have invited two people very well-versed in the public policy
questions, both in terms of scholarship and in terms of practice.
Both of them have seen the recent draft of the report and have
been invited to reflect as they wish on our working relation to
ongoing activities and practices, possible suggestions for further
development and extension of this work, but also to help us identify
key public policy areas in need of attention and reform that we
might not have dealt with adequately at all.
We are very pleased to welcome Professor Robert Friedland, who
is the Director of the Center on an Aging Society, also Associate
Professor in Health Systems Administration at the School of Nursing
and Health Studies at Georgetown University, an economist by training
as I discovered. It's not absolutely clear from his writings
that he is only an economist, but he is an economist and then some.
We are also very pleased to have with us Monsignor Charles Fahey,
who is the Director of the Third Age Center and Professor Emeritus
of Aging Studies at Fordham University. As you can see from the
short and unduly modest biographical sketch that he has provided
us with, he has been in this business for a long time, was a charter
member of the Federal Council on Aging and was appointed by Presidents
Nixon, Ford, and Carter, the last of whom made him chair of this
council. He has done every conceivable thing. He has been working
on these matters.
Welcome to you both. We are grateful for your presence. The
procedure will be as follows. We will start with Professor Friedland,
and we will ask Monsignor Fahey to speak. If there are questions
for information in between the talks, we can have them then. Otherwise
we'll save the general discussion for the end.
Thank you very much. Professor Friedland, please?
DR. FRIEDLAND: Thank you very much. I am really delighted to
be here on a personal level. And from a professional level, it
is wonderful that you have decided to add this to your list of things
that you have taken on. This is an area that is neglected. And
it's terrific that an august body like you has decided to think
about these issues. As you know as well as I now, these are very
So I would say that most of the public policy attention on long-term
care has really been about the formal part of the care. And you
have taken on the informal part. The formal care.giving is approaching
$200 billion per year. And maybe three-quarters of that is for
institutional care, nursing home care.
The specific concern is really the sustainability of Medicaid,
which is sort of getting all of the political attention, which currently
finances almost half of paid long-term care services.
In a recent report on Medicaid reform, the National Governors'
Association concluded that "Medicaid can no longer be the financing
mechanism for the nation's long-term care costs and other costs
for the dual eligibles."
The dual eligibles are in many ways the most medically needy of
our society. They are people who are on Medicare and whose incomes
and assets are so low that they're also eligible for Medicaid.
And, believe me, they need both because they need a lot of long-term
care and they need a lot of prescription drugs.
And, heretofore, Medicare didn't cover prescription drugs.
And so Medicaid was critical to this population, very small population,
six million or so people. And, yet, it has been a major concern
for governors worrying about their Medicaid budgets.
Certainly the lay of the land has been changed a little bit or
altered, if you will, by the Supreme Court finding in Olmstead,
has affected and in some sense added important ammunition, if you
will, to the efforts of states to expand home-based community services.
In fact, they were moving towards doing it anyways, but they have
accelerated that effort.
Most long-term is not provided in a nursing home. Most long-term
care is not paid-for care. Most long-term care is provided by family,
friends, and volunteers. It's provided mostly in people's
homes, where people live. And a relatively small percent of the
long-term population lives in an institution. Yet, as I've
said, institutions represents three-quarters of the long-term care
But in some ways, as difficult and fragmented as the system is,
really, these are the best of times that we have ever had in the
system. There has been tremendous growth in public money for long-term
care generally. In the '90s, for example, from 1991 to 2001,
the Medicaid spending on long-term care almost doubled, from 44
billion to 76 billion.
There has been a tremendous growth in home and community-based
care; in particular, as states try and rebalance their systems.
The systems are out of balance in this sense. All state Medicaid
programs must cover nursing home care. So it is a mandatory service.
They are not obligated to come home and community-based care.
When they do do it, they can set it up as a program across the state.
Only a few states have done that in personal care services. Most
states have done it through what is called Medicaid waivers, waivers
meaning some change, asking for permission to do something different
than in the rules.
So because the institutional care is covered, there has been a
bias in the system because help was available through the institution
but help was not available outside the institution. So there have
been tremendous efforts on the part of states to move care out of
the nursing home, particularly when they think, if they think, which
they all do — and I'm not sure it's true, but they
all think that it's cheaper outside of the nursing home.
What is true, though, is cheaper outside of the nursing home is
that you can buy smaller increments of care. You can buy a few
hours of care, instead of having to pay for the whole day of care
in a nursing home.
But this rebalancing has meant that, even in this period from
1991 to 2001, the expenditures in home and community-based care
in Medicaid have more than tripled, from 6.2 billion to 22.2 billion.
Now, I will point out that makes a big difference in the community
infrastructures, but most of those programs are waiver programs,
meaning that the state doesn't have to open it up for everyone
in the state. It could be set for a special population in the state.
It could be set for a special area in the state. That is what the
waiver means. It doesn't have to be statewide. It doesn't
have to be population-wide.
Most of that money, 75 percent of that money, in these home and
community-based waiver programs are actually for the mentally retarded
and developmentally disabled population. A very small percentage
of it is for the population that you focused on, which was the older
long-term care population, unless they fit into one of those other
All states have reorganized or looked at or reaffirmed or at some
level looked at how they organize the information referral systems.
The money from the Older Americans Act has helped to do that.
And persons at greatest risk, people basically 85 and older or
75 and older, had on average more children from which to tap for
assistance. They are, of course, the parents or soon to be the
parents of the baby boom. And so by definition, they had more babies
per woman. So these might be in some sense the best of times, even
though there's a lot we can say that is difficult and wrong
and inappropriate in the system.
It's fragmented. It's inefficient. There are a lot of
aspects that are unfair. No one is happy with the current system,
you know, not the governors, not the Medicaid directors, not the
federal officials, not the families, not the caregivers. There's
just nobody happy. It is much too victim-based.
There is not a pooling of either the access to care or a pooling
of the financial risks, like what to do and how to find care and
never mind how to pay for it, even if you're not going to pa
for it, even if it's going to be through family arrangements,
what to do, how to set it up. But there is just not enough risk
sharing in that enterprise of learning what to do.
Certainly people are living longer with chronic conditions and,
hence, face an increase in their lifetime risk of becoming dependent
Informal care is critical. I would say it's critical in all
aspects of health care. No one is in charge of the long-term care
system, at least, rightly or wrongly, in the medical system. There's
someone in charge. It's the physicians that are in charge.
They're even in charge of the hospitals that they don't
run. You know, they have a lot of authority. And that is an important
glue that holds things together.
But health care, even health care, even in the confines of the
six walls of the hospital, it can be pretty chaotic. I would call
it maybe organized chaos, but even in those situations, families
find that they need an ombudsman, someone in the family to make
things happen, even in the confines of that walled environment in
which the physician is in charge. long-term care is just chaos
underscored by anxiety and guilt.
So I would say that you need a caregiver in the hospital setting.
And the further away you move from a hospital and certainly as you
step away from where the physician is in charge, it becomes even
more fragmented and more difficult to negotiate.
So the primary caregiver is critical in this arrangement. The
primary caregiver is the one, usually the one, could be two, but
the one who takes the responsibility to organize the care. Maybe
they provide all the care. Maybe they don't provide all the
care. But someone has to be in charge of organizing the 24 hours,
especially if you're talking about an Alzheimer's patient,
that one needs to cover for.
They're often the one who provides the most care. It's
usually the spouse or adult child, more likely to be the wife, daughter,
or daughter-in-law. The importance of caregivers is directly related
to our failure as a nation to focus on the risks in a very serious
We need caregivers in the health care system. And, yet, we recognize
the value of the medical care system. And we have a very elaborate
system of referrals and moving patients from one part to the other.
And, still, it's messy, but we don't have that in the long-term
care setting. And so we have put all of that pretty much on the
And not facing this risk does not diminish the need or the cost
of the care, it's there. We pay for it other ways. We pay
for it in more suffering. We pay for it in more anxiety. We pay
for it in the well-being of the caregiver. We pay for it in the
well-being of the person receiving the care.
Everyone is at risk of becoming a caregiver, but access to information
and services is not even. Sometimes who you ask as the information
you are going to get will matter. Actually, very often the physician
is not the right person to ask. They may not know, but it's
the right starting point.
There is a very steep and uncertain learning curve. It's
amazing to me how many of my colleagues enter this who are professionals
in this field don't know what to do when it's their own
parent. It is, in fact, I suspect because of the other aspects,
but it's also really making these decisions now. So there is
a huge learning curve.
The consequences of all of this are not insured or well-mitigated
in any particular way. So it's psychologically exhausting,
physically exhausting, financially exhausting.
The caregiver of today, like the caregiver of the past, tends
to over-extend themselves to provide the care, putting their own
health, their marriage, their relationships with others, their future
financial security at risk.
So what are the public policy options? Well, looking back, what
policy options had been on the table? And if you go back 20 years,
you find that they've all been on the table. Everything has
been on the table.
Just looking at past six to eight years, most of the tension has
been a little more focused. So when I say "everything,"
everything from national insurance program for long-term care; that
is, full, comprehensive coverage, to minor incremental things, all
aspects have been discussed but never taken very seriously. That
is, it was never on the table in a way that it looked like it was
The past six to eight years, most of the focus has been on tax
credits for caregivers, more public incentives for the purchase
of long-term care insurance. I say more because there are incentives
now in the Tax Code, but these are to make it even more explicit.
And in the meantime, families are really struggling to figure out
what to do, how to do it, whether they are doing the right thing.
So if we talk about building on the current structure, then we're
talking about providing tax incentives to encourage future generations
to purchase long-term care insurance.
What's also on the table at the moment is something called
the Partnership with Medicaid, which is a way of using public resources
to encourage the purchase of long-term care insurance without having
to actually up front spend those resources.
If you provide a tax credit for insurance, then you are foregoing
tax revenues the moment that the person buys the insurance. If,
instead, you say, "We'll make a deal with you. Buy insurance.
And we'll change the rules for you for Medicaid if you need
it," then you haven't put any up-front public money into
it. The money if there is any money .. and I think there is ..
it's in the back end when you become eligible for Medicaid easier,
faster because you bought this long-term care insurance policy.
Those who promote it believe very strongly that the private insurance
will save Medicaid money. I think that's an empirical question
that will depend on a lot of factors coming together. And my best
judgment is it will cost Medicaid money, but it won't cost any
money right away because you won't be selling the insurance
policy to someone who needs Medicaid tomorrow. You'll be selling
the insurance policy to somebody who passes the underwriting screens
and isn't likely to use it. And, therefore, you use public
money to leverage private insurance. But I think it will cost money
later. But even if it does cost money later, it's not going
to be scored by CBO, the Congressional Budget Office, in a way that
is going to cost a lot of money.
So the Partnership with Medicaid, whether you're doing it,
proposing it for that reason, because it's not up-front public
money but it may be back-end public money and perhaps the possibility
of no public money or whether you ideologically believe that's
the way to go is getting a lot of attention.
There are five states that had permission through the federal
Tax Code to do it. Four states went ahead and did it before the
Congress, particularly Congressman Waxman, put a stop on it, on
states being able to do it.
So there are four partnerships. There are five states with permission,
four states who are doing it. And there is a desire on some ..
and this is being debated or could be debated. I don't know
what the agenda is going to look like after the hurricane, but could
have been debated in the next session as a way of expanding private
Something that has occurred at times could occur in a bigger way
is teach Medicare beneficiaries about long-term care coverage in
Medicare. The notion is that most people think they have full coverage
for long-term care.
The simple answer is they don't. The more complicated answer
is they sort of do, but they don't because what health insurance
covers and what Medicaid covers is as opposed to acute care and
looks like long-term care because it's in a nursing home. But
it's really a substitution for acute care, inpatient care.
You've got to tell people that they don't have good coverage
for long-term care, and maybe that will encourage them to do something
I think the difficult part for the government is to say, "We
don't cover it but don't have an answer of what to do about
it." You know, I think the political answer is "Buy insurance."
It may not be satisfactory. I don't know. It's a dangerous
position to be in. And the government has tried to do that without
being very explicit about it.
Provide more funding for information referral programs. These
programs are often poorly funded, certainly provide tax credits
to caregivers. Often that's linked to the incentives to buy
insurance as a political we're going to give something to caregivers.
We're going to give something to people by insurance. And that
will take care of the future. But the problem is both of those
things cost money.
Another possibility that has not been really talked about is providing
respite benefits through Medicare, that hasn't been really talked
about lately is provide respite benefits through Medicare.
Another thing that has not been talked about lately is to expand
Medicaid coverage of home and community-based care in a way that
is more congruent with the way we treat nursing home care.
Another thing that has not been discussed in a long time is requiring
employers to pay for some of the leave employees take to provide
long-term care. As you may know, employers of 50 or more employees
are obligated to hold the job for someone who is providing care,
but they are not obligated to pay except in California. But there
are mechanisms that could be put into place to do that.
Well, I would say that incremental changes are just that. And
there is a long list of activities either underway or in discussion
that could help support caregivers and could make a big difference
in one person's life.
I guess the question is, how much more would make a significant
difference or do we need more fundamental structural changes? I
guess you know where I am heading. I think without structural changes,
it is likely to be harder for caregivers in the future.
And I think, just to make a side comment about the report, you
have a sense there is a crisis now. I don't think we have seen
anything yet. I would call these the best of times. I mean, I
think when we get to the real crisis, these are going to look like
the good old days.
I think potentially further declines in mortality rates, faster
than declines in debilitating morbidity rates may increase the lifetime
rates of dependency.
After 2015, the numbers of people needing services are likely
to begin to increase faster than the supply of workers available
to provide services. This will result in relatively larger price
increases for all payers. And, of course, the big payer is Medicaid.
Medicaid is going to have bigger budget constraints or concerns
than they have now.
The same decline in fertility rates that has caused a slowdown
in the labor force also means less children per mother. So the
decline in fertility rates since the mid 1960s will mean far fewer
adult children upon whom to turn for assistance.
So everything that is great about our current system or unfair
about our current system may be worsened by 2030, imposing even
larger risks on caregivers.
So I think we ain't seen nothing yet given the fact that we
have the baby boom here for their parents. As difficult as that
is, the next generation isn't going to have the baby boom of
children behind them.
I think the key is to think about what kind of long-term care
system we want for our grandparents. And I often think about my
children, what kind of long-term care system do I want for my children,
because I don't expect to be here to take care of them when
they are old and really have more of a public dialogue about how
to sort out the role in which caregivers as adult children to our
own parents and as children, as adult children, ought to participate
in the care.
What we know is that parents do not want to burden their children,
but parents want to do everything they can for their own parents
and to the extent that they even can harm themselves and also the
person they are caring for. I mean, it's not always a healthy
situation in all circumstances, in all that care.
Let me make a few words about the potential for private insurance.
I have been writing and thinking about long-term care insurance
before there was a national market for long-term care insurance.
I am not exceptionally happy about the way that market has developed,
even though I have been a long-time champion of the notion that
long-term care is an insurable event.
But when I started writing about it, the national companies, the
big companies, were publicly denying that long-term care is an insurable
event. They said, "We don't know if it is an insurable
Well, they got into the business. And some of them decided it
was a mistake. But the private voluntary long-term care insurance
market is growing like gangbusters, particularly for a couple of
companies that have done really well. They're making a lot
But it's not likely to provide the impetus for structural
change in the next 25 years. The population covered is too small,
not growing fast enough to really make a fundamental difference
in the financing of the long-term care.
I think, more importantly, long-term care insurance is not like
health insurance. Health insurance, you can have a debate about
what is medically necessary. You can have a debate about the protocols
that one needs to go through or what kinds of steps you have to
go through to get a referral.
But in long-term care insurance, you're not buying coverage.
You're prefunding a risk that you choose to cover. It's
a great device, mostly because of the tax benefits, because other
people drop coverage.
So it's a great device for prefunding. You can do better
prefunding and through this instrument than on your own, but it's
not necessarily going to cover long-term care. So it is not going
to have a large role.
It currently is in the national income accounts as spending part
of long-term care. Most of those dollars are health care dollars
paying for cheaper than nursing home care, which is cheaper than
So most of the dollars being spent in long-term care through health
insurance is through private health insurance, not long-term care
So there have been disparate but small steps. But, for example,
some of the nursing home industry realized that they really have
to change. There has to be a paradigm shift in how they deliver
care, how they organize care. But there are just a few places that
are trying to do that.
Most of it is being done I think for the right reasons. The main
thing they're worried about is turnover, staff turnover. They're
trying to retain staff. And that is good for quality care.
But their main focus is on delaying turnover, staff turnover,
which, as I said, is good for quality care, but there is no other
real attention outside of the nursing home on how best to deliver
The topic in the last 20 years has moved from the front page,
which was all about the disasters, mostly fire and safety code disasters,
in nursing homes to the style section, which provides opportunity
for a broader discussion, but it really hasn't taken off in
any meaningful way.
So far I don't think there's been enough of that kind
of discussion to provide permission in my view. What policy-makers
need is permission to lead on this. What they can easily say is,
"I care about it, but it costs too much money." And then
that is the end of the discussion.
I think if we really care about caregivers, we need to value them.
The starting point in a small way would be to talk about tax credits
in a different way.
Families with the same income should not pay the same taxes if
one family is providing care and the other is not. We should view
that as an equity issue, not as a sort of financial payment or incentive
for people to provide care. They're going to provide the care
as best they can.
And the $3,000 is not going to make a huge difference in whether
someone leaves their job or not. Okay? It will affect the low-income
person. I don't want to minimize it, but to talk about it in
the way it has been talked about doesn't value the caregiver.
If we talk about that it's the fair thing to do, it's
the right thing to do from an equity, tax equity, perspective, then
at least we're beginning a discussion in the right sort of tone.
There could be real meaningful expansion of resources for information
referral and training, training of the nonprofessional family caregiver,
how to lift without hurting yourself.
Another possibility or route for that could be a respite care
for caregivers of any age provided through Medicare. It will not
break the bank of Medicare and certainly perhaps a discussion with
employers about paid time off for work for caregivers. It could
be financed through taxpayers, but it's real money. But there
are ways of doing it.
And if we do these kinds of things, all of these are incremental
at some level. But they acknowledge that we do value caregivers,
what they're doing.
I appreciate what they do, and I very much appreciate having the
opportunity to talk to you about this topic.
CHAIRMAN KASS: Thank you very much.
Questions for information? Dan Foster?
DR. FOSTER: One question about the private long-term insurance.
You pointed out that the amounts are usually pretty small. What
is your assessment of given the financial viability of such insurance
plans and companies?
Do projections suggest that this really is viable or is this a
way of getting a significant amount of money and then coming up
six years, eight years, ten years from now saying, "Well, we're
bankrupt because we can't pay that"?
DR. FRIEDLAND: I think they are absolutely viable as a business
enterprise because of the way they are structured. The risk is
not on the company. The risk is on the individual. The risk is
inherent by what you decide to purchase.
You basically say, "I am going to buy a $200 a day policy."
And maybe it's going to have an inflation protection in it,
but the inflation is pre-prescribed five percent per year, regardless
of what the real inflation is.
So that is just money. And actuaries are very good. It is surprising
to me, actually. I went to one of the meetings with the actuaries.
And I was shocked that they had miscalculated the long-term federal
And, as a result .. here is an example of why this is a great
business model. As a result, they can raise the premiums. So if
you mess up on something as .. you know, I was shocked because I
would have thought the bond rates, maybe because I am an economist,
would have mattered a lot. Since you're talking about holding
on to this pool of money and investing in it for 30-40 years, the
long-term bond rate matters a lot. And, for some reason, they hadn't
sort of thought about that as much in their models.
But, at any rate, they have a way out. If they mess up, if the
bond rate turns out to be a lot lower than they expect, if the lapse
rate, which turned out to be; that is, the people who buy the policy
and drop it, if the people hold on to the policies longer than they
expect, which also occurred, they go out. They can raise the premium
for the class.
They can't raise it for you because they don't like you
or they don't like the color of your eyes. They can raise it
for the entire class of policy.holders.
So, in other words, if they mess up on the premium, they can charge
everyone who bought it and say 10 years from now, "You know,
we have to raise the premiums another $100 a year."
They do do that. There are some that have been raised. The belief
was they purposely lowballed the premium. I can't say that
they really did, but there were a couple of class action suits that
were settled when the premiums went up 700 percent.
CHAIRMAN KASS: Still questions of information, rather than expand
to discussion. Robby and then Frank.
PROF. GEORGE: Thank you.
Yes. I wanted to follow up on Dr. Foster's question about
the insurance companies; really, two quick questions asking for
clarification in your opinion.
The first is you noted that a couple of companies had made a lot
of money. have they made a lot of money because they are offering
a quality product to the consumer or are there other reason?
And the second thing is, there are I gather from what you said
a couple of companies making a lot of money, but a lot of other
companies found that they couldn't. What accounts for the shake.out
that leaves us with only a couple of companies that are really,
I gather, viable? And are we now going to have a monopoly effect
as a result of that?
DR. FRIEDLAND: Well, I think we do have a monopoly effect already,
even though there are more companies than I have portrayed. I
mean, there are many companies. Most of the market is dominated
by a couple of companies.
I think it is absolutely viable from their perspective. Your
question was, are they selling better products? You know, as you
know, when you buy this laptop computer today, it's obsolete
a couple of years from now. But you know that going on and you
don't really care because five or six years from now, you'll
buy another one.
It's a harder thing when you buy a long-term care insurance
policy and the policy design is changed because you only buy a long-term
care insurance policy once. It's a lifetime decision.
There are very few products that you buy for the lifetime. Even
your house, you probably buy more than once, buy more than one house.
You know, you use the equity in your house to buy another house.
But you can't do that with a long-term care insurance policy.
Are there good policies out there? I don't know what "good"
means. You're asking somebody to look at their current circumstances
and make a decision about whether their adult children will be alive,
whether they will still have a spouse, what their circumstances
would be 30 years down the road.
Can you buy more bells and whistles? Can you buy more comprehensive
coverage? Yes. Can you buy nonforfeiture coverage? Yes. All
of these things add lots of money to it. But you're basically
just buying money. You're not buying coverage. I'm going
to buy a $500 a day policy.
And what excludes Mayberry and whether or not you get any money
back if you stop making premiums may be a part of the policy. But
you pay for that money. So I think it's a good deal in the
sense that if other people drop the policy, then, and they bet that
correctly, then the premium isn't going to go up and those people
do very well.
So I can't answer your question. They are not insuring the
risk. They are insuring what you define to be the risk. And they
do a very good job at that.
CHAIRMAN KASS: Frank, still for information?
PROF. FUKUYAMA: Partly for information. Maybe
it expands the discussion a little bit, but from what you've
said, it just sounds like we are piling up a really large future
social liability that is unfunded currently given the sources of
how we pay for this.
Now, one it seems to me straightforward solution is .. you want
to expand the pool of risk. Some very straightforward way of doing
this would simply be to mandate a kind of means.tested mandate that
everybody buy insurance for this, which would drive down the average
cost for everybody. And it doesn't affect the balance sheet
of the government because it's all privately paid for. So it's,
in effect, forcing people to save.
Can you just talk through the politics of that? I elan, who is
going to object to that? What coalition of interest groups is going
to shoot that down? And what kinds of arguments are they going
to use against that kind of an approach?
DR. FRIEDLAND: Well, I think, actually, the insurance industry
would be opposed, I think, to a mandatory .. I think that, you know,
they have no desire to cover everybody. They just don't. They
want to cover those that are going to be able to continue the payments,
those that are lowest risk.
I mean, there are a lot of ways of doing very well and doing good
for people, too, without necessarily covering everyone. So I think
one aspect of the politics might be the industry itself being a
little frightened about the government saying, "You've
got to cover everyone, and you've got to have these rules about
I mean, can I exclude people who have had a heart attack? Is
there governmental oversight in the rates that I charge? So I think
they would be very nervous about a mandate for private insurance
that would involve government oversight about how they do their
business? Does it have to be a standard benefit package?
So they want to freedom to design it and sell it. On the other
hand, they want government effort in getting people to want to buy
it; i.e., the tax incentive. You know, give me more tax incentives,
and I can then make it easier to sell.
It's a very hard product to sell. It requires an agent sitting
down with a couple at their kitchen table. It's a very expensive
product to sell that way because you usually have to do a couple
of visits. And then, of course, you have to pay the commission.
I think from the public side, there may be groups that are opposed
to the mandate of private insurance. Why not use a social insurance,
they might say? Why run it through that commission system? Why
run it through those various structures, of which you would have
The commissions are not insignificant. If you've got salesmen,
they're competing with why my product, as opposed to another
product. And that might be good because it gives consumers choice,
but then if the government is forcing you to do it and subsidizing
the low.income people, I would imagine the government might want
to say something about what it is that is being sold and how it
is being sold. And the private sector might resist that.
CHAIRMAN KASS: Let's hold further discussions and turn the
floor over to Father Fahey. Thank you very much.
FR. FAHEY: I must admit to being almost speechless for the first
time in my life as I hear all of these things. And I have all of
these notes, and I say, "But I want to correct what he had
to say" or modify or whatever the case may be, never correct
but build upon.
And I would say at the outset I have been wandering around this
field since 1961. So I was there before Medicare and Medicaid and
actually was a participant in those discussions in one of my former
There are really a couple of things that tend to situate myself
at this moment. Some of you may know there is a relatively new
commission on quality and long-term care that comes out of the private
sector. It's chaired by, of all people, Newt Gingrich and Bob
Kerry. Present company excepted, it is a distinguished group of
The weakness of the commission is that few of them are really
into long-term care, but they are of such standing that if the commission
can get its act together, if we are able to, it could have significant
impact upon quality in the system as we know it or as our leaders
are very anxious to do, move forward to what should the system be
in the future.
The second, I work with the Milbank Memorial Fund as a program
officer. And among the things that fund does is try to bring together
decision.makers from the private and public sectors who would not
otherwise be able to come together. And one of the structures that
we have, we have a reforming state group, in which we have all 50
states, somebody from the governor's office, somebody from the
Legislative Branch, nonpartisan.
They create their own agenda. And we, in turn, program officers,
facilitate their conversations and try to follow through as they
define themselves of X states coming together to talk about the
cost of pharmaceuticals or what is on everybody's agenda at
this time: how do you pay for long-term care.
So all of those factors are a part of my being and thinking, in
addition to all the experience over time. But there is one other.
And I'm hesitant to do this, but I think I might. You've
got a piece of paper of 30 pages or something. I think everybody
has, at least what I was thinking at the time I wrote the paper.
It may not be what I think now but what I was thinking then.
I want to tell you another story, and that is of being a son.
I am 72 years old. Okay? When I go home tonight, I will write
a check to a long-term care facility for my mother, who is 97, had
her 97th birthday September the 3rd.
It will be the last time I write the check myself for the total
care because between my mother and my father, the cost has been
$400,000 in terms of their care throughout their lifetime. My father
died ten years ago, at 89, after a period of frailty.
So in a sense, it's atypical in that I am an only son and,
of course, atypical that I am a priest. But there are many times
that are so typical in this experience that it might be worthwhile
to talk about experience for a moment and abstract from it in terms
of some of the things that we are talking about but in flesh it,
if you will, just a little bit.
One of the first things, I'm not sure that you brought this
out in the report sufficiently, but you know we now have four generations
alive as normative and sometimes five. So we have two generations
Then you add on to that the change in the American family and
so on, divorce, remarriage, non.marriage, and you do a sociogram
through significant others in a lifetime. It really is fascinating.
Of course, that is part at the heart of all of this, who is responsible
for whom under what circumstances.
Honor your father and your mother. For heaven's sake, which
one? It's extraordinarily complex at the very most foundational
I suppose that's the second thing I want to state out of the
back. When I give talks, often the title of it is "It's
never been this way before." So the development of a third
age that is necessary neither for production or reproduction is
the first time in human history we have had it.
So neither culture nor social structures have kept up with the
realities. And, of course, public policy hasn't kept up with
the realities either.
So having commissions like your own is extraordinarily important
to delve into the very most fundamental aspects of this. Again,
we're in an epidemiological and demographic revolution caused
by all the stuff in public health particularly and so on.
So we're in a very different set of circumstances. And in
the broad sense, it's a huge economic issue, economics being
managing the household. So it's how do we manage the most fundamental
household, where the coin of the realm is love, guilt, responsibility,
and all of those things? And how dominant should that be in this
whole area of long-term care?
Of course, the second, economy is the mercantile, if you will,
the exchange of goods and services for money. What money does,
really, is to get somebody else to do something that they wouldn't
And so in this area particularly, what we do is we buy services
or places when the persons or the places to give care are not satisfactory
or not present.
So there is a great overlap between the two of formal,/informal,
paid/non-paid. And the great ethical issue is to some extent who
should bear the burden and under what circumstance, if you will.
Again, that is the third of the economies that we have to kind
of balance in all of this ethical reflection. And that is the political
economy in which the power is of the state to cause things to happen
through threat or through incentives or whatever they are. And
they are a huge actor in all of this.
So in our, your kind of reflection, here you have got the individual
and the socially significant people and their lives. Then you've
got state government overlapping. Then you've got federal government
overlapping. And then all of this is within culture.
And we have this changing scene of how are we going to sort all
of this stuff out with the change in the structure of the population,
which is extraordinary?
And, as Bob said earlier, what we're talking about is establishing
sustainable, predictable, fair structures that will be there over
time. Sometimes I think people sort of have in their mind we're
talking about those old people now. But what we're really talking
about is, how do we have just structures that are equitable and
adequate, through which we will all pass over time and that are
sustainable, if you will. And this is an extraordinarily complex
Now I want to go back myself for a minute, if I may. I grew up
in Syracuse, New York in a lower middle class area, older houses.
I remember when my parents bought it when I was in high school.
As we did things in those days, they paid $10,000 for it. I think
they had saved $9,000 through their whole lifetime before they bought
it, very small mortgage.
And they stayed there when I went wandering off to the seminary.
But a lot of their contemporaries died. But they were there. And
the younger families came in. That was in a sense good and bad
news. But they had sidewalks, and they had a front porch.
And they had a dog. And they loved the neighbors' kids.
And so as these younger families moved in, they didn't have
to worry about the kids coming home from school sick because Charlie
and Elizabeth were there. And they put the kids over their flowers,
and they loved to hold the kids. And they talk with the parents.
Geez, I came home one time. I was a priest. And here my parents
are talking with some couple about sex. Geez, they never talked
to me about sex. You know? And it just was amazing.
But my father began to become frail, multi-infarc dementia, many
TIA experiences, became less stable on his feet. Of course, this
is the same Charlie that would plow everybody's driveway and
everybody's sidewalk with his ancient snowblower in Syracuse,
which has more snow than any other big city in the whole world,
But what was then devolved was a sense of solidarity and reciprocity
because then as my father became more frail and would fall out of
bed, it would be the same tykes, now 18, 19, and 20-year-old, whom
my mother could call and they would come over and put him back in
Okay. Now, as my father becomes more frail, we have one bathroom
upstairs, to see him crawling down the stairs or, worse, crawling
up the stairs. You know? So then we got home care, home and community-based
That was great except when they didn't show up, you know.
And when you have a home care worker that doesn't show up for
somebody who is totally dependent, that's something else, especially
if that dependent person also has a frail wife.
So at some point I said autonomy be damned. And I said, "You've
got to move." Assisted living was the next, which was very
nice, lifesaver, very expensive but a lifesaver, if you will, because
they had cafeteria services and they had meals they could get, cafeteria
in the sense that they could hire just so much help as they needed.
It was good, but I remember being at an American Society for Aging
meeting in San Francisco, and I got a call. This is the long distance
caregiving. And the person says, "This is" so and so,
"Your mother fell and broke her hip."
"No. You mean my father."
"No. Your mother," my mother helping my father go to
the bathroom. He fell on her. So off I go, you know, to go through
And there was that period of my life when I'm running the
Third Age Center, being a world renowned professor and gerontologist.
And I'm sleeping on the couch with father in one room and my
mother in the other and me wondering who is going to have to go
to the bathroom first during the night and how I am going to manage
it. I learned a lot about being a certified nursing assistant.
It took the hard way. I almost broke my back doing it, but I learned
how to do it eventually.
Eventually my father became more and more frail. And we talked
about surrogate decision-making, here, there, in an institution,
frankly, that I started. He goes to a hospital, of which I am a
trustee. And he goes with a bowel blockage. And the wonderful
doctors there and I were looking. We said, "Geez, we'd
better admit him. And, you know, I don't know what we can do."
Then as they're wheeling him out on a gurney, having gotten
all of the information .. he's been in the hospital about ten
times, but, of course, they ask the stuff over and over again ..
they said, "Mr. Fahey, if your heart stops, would you like
to be resuscitated?" My father doesn't know whether it's
January or June or what it is. And he sort of mumbles, "Yes."
As they're wheeling him out, I, who am now in the Public Health
Council for the State of New York, knowing full well all of the
ramifications, say to the doctor, "If anybody touches him,
I'm going to break their arm." He doesn't read the
New England Journal of Medicine. Okay?
I could go through a whole series of experiences where I surrogate
decision-maker for mother and father, I a member of the Institute
of Medicine, I a trustee of all of these things, (a) psychologically
how hard it is; two, what knowledge you need; and, three, how you
have to negotiate the system at every step of the way, that in addition
to having surrogates, we have to have ways in which those surrogates
are able to be supported with knowledge, understanding, and how
they can be advocates for the people they're engaged and involved
My father was playing golf in his mid '80s. At least he was
going out with his little cart. And he and one of his buddies,
we never knew whether they were playing golf or whether they were
looking for golf balls because they loved to go around and look
in every ditch and so on and so forth.
He finally had to go in a nursing home and finally died. Mother
was able to be sustained but now for the past three years has been
in a long-term care facility.
I mention again the cost. These are middle class people. My
father worked for one company all of his life. The company went
bankrupt. He had a bond with the company. That went down the drain.
His pension went down the drain. I'm still paying to that company
for her health insurance. Of course, I pay for the whole damn thing.
You know, the company doesn't put a nickel into it. They just
are a conduit for the whole thing.
Now, all of that is to say we have to in some way redefine what
we are talking about. And I would like to use a phrase that was
used this morning. Frailty is really what we're talking about.
And it's progressive intermittent frailty that accompanies inevitably
the third age, third age being a biologically based phenomenon that,
frankly, doesn't exist in most living things except human beings
because we're able to defy Mother Nature with all of our stuff
that we intervene with.
Of course, that's the big issue ethically. Science is not
its own end but, rather, has to be morally justified in how you
use the things of science, but that is another story for another
But here in this third age now, we are developing this capacity
to continue to live but at enormous costs: psychological; emotional,
if you will; opportunity; and economic. And the question is, how
do we share the burdens? Just society is one in which burdens and
benefits are shared by equals equally, by unequals equally, in accord
with capacity and need. This is what you're about and we're
all about is how are burdens shared and what is the burden that
Now, I say this because economically frailty costs substantially.
I mentioned our own middle class, our lower middle class. My folks
never earned a great deal. But it was only because of the appreciated
value of their house that they were able .. Social Security being
underneath it all and Medicare paying for stuff, and then they paid
a lot out of pocket. I knew how to shield and transfer resources
and all of that, but we didn't do it. They wouldn't do
it, and it was for them and hooray.
But here is the huge issue that we have coming along the way from
an economic point of view. We at Milbank with EBRI, the Employee
Benefits Research Institute, that knows more about pensions and
all of that stuff than any other entity in the country and is supported
by both labor and business, we were able to go to Oregon, Missouri,
and Massachusetts and to have access to the retirement programs,
defined benefit and defined contribution, of every single employed
person in those states.
Also, there is a derivative study now just going to be reported
on if it hasn't been in the past week in Minnesota. In this,
we were able to project forward against Social Security, same, better,
worse, with inflation, disaggregated by gender and by family structure,
what is the probability of current employed persons to have X percentage
of certainty in regard to having enough for decency.
Of course, guess who comes out with extraordinary risks? Single
women, whether single because of divorce, never married, or whatever
it is. But virtually everyone to have decency has to save more
than they are saving, but, of course, they aren't.
The other side of that, we aggregated it all to see, if you will,
the unfunded liability, just using it broadly, of states and the
Medicaid systems. I'll tell you. Our people in the reform
state groups are scared out of their wits because they see what
is coming down the drain.
This is a huge issue for us as the nation of how do we generate
sufficient resources over time to deal with this prolonged period
of retirement in which assets are sold, are diminished for ordinary
stuff, to say nothing of being able to sustain people who are in
need of the need for others.
I want to make another point in this regard of frailty. Already
the default system, as Bob has mentioned, is family, friend, neighbors.
People cobble stuff together to have decency. Frailty involves
a disequilibrium between internal capacity and external demands.
It's disequilibrium between external demands and internal capacities.
External stuff can either be good or bad. Internal stuff can be
good or bad.
For example, the Americans With Disabilities Act, when we passed
that, all of a sudden, disability was greatly reduced de facto,
not just definitionally, because we change the way in which we would
do stuff. You know, every sidewalk in the country has a cutout.
It makes it easier for all of us to deal with those things.
Unfortunately, in the frailty issue, I mention, again, extracting
from our home, they had to move largely because of having a bathroom
on the floor and no practical way to put one on the first floor.
Frailty is generated by the death of a spouse. Frailty is generated
because of my father's frailty and my mother, therefore, became
frail. Frailty is generated because of a loss of income, if you
So there are all of these externalities that in one way if we
look through the third age from a population point of view, there
are predictable things. But the way they play out is idiosyncratic.
That makes it very difficult to create entitlements because of the
difficulty of defining that which would trigger a benefit, if you
So that's just kind of a thought. What we're really talking
about in terms of government is what is the role of government:
public good, common goods. When it gets down to individual stuff,
what is the role of government in that regard? And that is if they
are going to have benefits, for whom?
You know, we have two different tracks we go for in this country.
And it's a mix. The one track is social insurance, in which
we all have a risk; the other welfare benefits. This is true in
this area, in which ironically for health part of long-term care,
we have Medicare and everybody is covered, for that which is really
the essence of long-term care isn't medical. It's basically
sustaining people. It's hugs, and it's getting people to
the bathroom. It's cleaning them up. It's all of that
Again, a little incident. I'll never forget my mother saying,
"For heaven's sake, I never thought I'd have my priest
son help me put on my bra." But that's really what we're
talking about. It's that kind of stuff. Who cleans up the
shit? You know, these are the kinds of stuff that we have to face
and deal with over time.
So it's what is the burden that we're trying to assess
and when do we want to intervene in that. And when government comes,
what form do we want to give it? And do we want to give it in services?
Do you want to give it in money? And who should bear the economic
I'm going to conclude with this hopefully not too disjointed
presentation to address something that you addressed. If you ask
Fahey what you should do, I think ultimately we need a social insurance
program and it's based on disability and it's money. And
you give people based upon a level of disability income. And they
cobble together what they need.
It probably would de facto mean that there would be .. I'm
saying "de facto," not technically .. coinsurance and
deductibles as a result of this, probably wouldn't meet the
total cost. So, therefore, there is still the principle of subsidiarity,
if you will. People would still be able and challenged to get long-term
insurance when you really talk to the long-term care insurance people.
They would see in many ways that their role would be complementary
to a social insurance program, rather than being the basic element
underneath it all. But I think that's the kind of thing.
And it's somewhat being done in Germany. Somewhat it's
being done in Japan as well. Again, disability, the degree of it,
deciding what the benefit would be; and then, secondly, that depending
on where you got it, it would be discounted. But it could go to
We have an interesting experience going on now, as I think you
reference in your work, called Cash and Counseling, which in some
ways that's what it is. It's welfare, but, in effect, what
it is, it gives people money and lets them .. do they need a car?
Do they need a ramp? Can they pay somebody not to go to work?
And it seems to be providing some pretty good stuff in Arkansas
and Florida. And there is some research being done in it on those
kinds of things.
So, again, how do we establish things that have sustainability,
adequacy, equity, reflect social solidarity, reciprocity, all these
kinds of moral words that we use? But we have to do it.
And I'll conclude with this. In our Commission on Quality
in long-term Care, in which we're struggling and sloveling along,
we recognize that our funding is ephemeral in that who knows how
long we'll have it and never are we going to be able to address
all of the issues that need to be addressed. There is a need for
structures that will be over time that look at these things in a
passionate dispassionate way if I can put those two things together.
As Bob can tell you and I certainly after all the scars of 40
years in the field, this is a field of advocates and of lack of
civility of people. The field of aging has so many oxes that get
gored, so many people with economic and psychological states in
it it's extraordinarily hard to have a conversation that makes
Everybody thinks their piece of the action is the piece of the
action. If you ever want a validation of the point the excellent
is the enemy of the good, it's all the people on the side who
say, "Well, if you only do this, then this will be good."
So, anyway, there are a few thoughts that I hope that might be
of value to think about. And read the paper. You might find that
CHAIRMAN KASS: Thank you very much.
The floor is open for discussion; first, I guess, for specific
questions to Father Fahey, but both papers are really open for general
FR. FAHEY: By the way, I should say one thing. It was interesting.
This was a public committee. Newt Gingrich, of all people, said,
"You know, this long-term care stuff, maybe we ought to be
sure that everybody who is employed when they go be employed, that
somehow that we mandate long-term care insurance," Newt Gingrich,
no less, public. He said, "Oh, yeah. Not all poor people
can do it. We ought to subsidize the poor people, but maybe then
the risk pool is so big that it would be relatively inexpensive
to be able to deal with."
CHAIRMAN KASS: Questions? Comments? Robby had his hand.
PROF. GEORGE: Yes. Could I go back to the question that I raised
with Mr. Friedland earlier ..
CHAIRMAN KASS: Sure.
PROF. GEORGE: .. or do people have questions for Father Fahey?
PROF. GEORGE: No one. Mr. Friedland, if I could follow up on
the economic questions I was asking. Those companies who have done
well out of this, have they done well while others have failed because
of a more efficient way of operating the long-term care insurance
business or were they the beneficiaries of peculiar circumstances
that enabled them to succeed and I gather succeed handsomely while
others have failed?
DR. FRIEDLAND: I don't really know if I know the answer to
your question. There are certain toe holds that make a difference.
For example, if you have an association plan and you're with
AARP, that's a big marketing device. If you get the contract
itself to all employees of the federal government, it's a huge
employer. Those efforts to get that, book a business as an access
to it as a sole right makes a huge difference.
I suspect that there are differences in the distributional mechanisms,
both in terms of the arrangements they have with agents, whether
they are their own agents or whether they are independent agents.
I suspect that, to some degree, that has a bearing. If you have
independent agents who are not pushing long-term care insurance
because it's harder to sell than life insurance, that can have
I don't have a good answer as to what makes a TIAA-CREF decide
this is not a good market to be in. I don't want to get in
this. I want to get out of this market.
You know, that's a reputable company. They're in it for
the members. And they decided that they would offer it to members.
And whether it was simply because members didn't buy or whether
the costs were too high to sell it, I don't know the answer.
FR. FAHEY: May I offer a thought or two also?
CHAIRMAN KASS: Certainly.
FR. FAHEY: The state governments are very much enamored, some
state governments, of the notion of long-term care insurance as
being one of the ways of relieving the burden of Medicaid. So they're
looking into it rather extensively.
From the company point of view .. and here I'll have to be
careful because I have been on the road for Met Life, which is one
of the ones that are successful, although they don't like to
have me talk because I often say long-term care insurance doesn't
make sense except for a rather narrow band of people economically.
It just doesn't make sense. They don't like to hear me
But from the insurer's point of view, in fact, we have 50
different states with 50 different sets of regulations in terms
of the marketing. It makes it very difficult for them.
So the degree, as Bob said, if you can book the business one place
in one set of circumstances, then it becomes economically viable
to be able to do it.
Now, on the other hand, the National Association of State Insurers,
whatever they call it, State Insurance Commissioners, they have
all kinds of questions about all of the long-term care insurance
in terms of its long-term viability, marketing practices in a whole
variety of areas.
PROF. GEORGE: Do either of you have thoughts about what could
be done by way of public policy to create economic incentives and
let competition do its part to make long-term care insurance more
readily available and affordable or, no matter what we do, will
you take the position, Monsignor, that it will still only make sense
as private long-term insurance to a relatively small segment of
the public who will need care?
FR. FAHEY: No. It isn't so much who need care but who can
afford it, for whom it makes sense. Once you're above a certain
economic level, you might as well insure yourself.
Once you look at what long-term care means, who uses it, how long
it is, what's the risk, the risk is relatively short for the
most expensive. Now, I probably talked about with my parents one
of the more expensive things, where you have a husband and wife
who live to be 97 over a long period of time. And so they spend
all their money.
But still it's only now with my mother. I don't know
whether she's going to live another day or not, but she goes
on Medicaid. So they spent all the money. It would have made no
sense except to me if I wanted to pay their premium if that would
have made economic sense. But it doesn't make any economic
sense for them to have gotten it and for most people above a certain.
Below a certain economic level, it does make ..
PROF. GEORGE: You can't afford it. I assume you can't
afford it below a certain ..
FR. FAHEY: They can't afford it.
PROF. GEORGE: Yes, right.
FR. FAHEY: Exactly. So it's a relatively modest place.
The second thing is how you sell it. It is very uneconomic for
an insurer to sell this stuff unless .. you see, most companies
won't sell it as a group policy. They may have it as part of
their cafeteria plan and just be a pass.through, but they're
not going to contribute to it, nor would the employees save for
the federal government constitute a group of shared risk. That
risk goes into the total risk. So it doesn't make it much cheaper.
So they don't like to even sell it that way.
They are just a few ideas anyway.
DR. FRIEDLAND: As pointed out, the place to make this happen
would be in the employer market, the employment.based market. You
know, we don't really have large penetration rates of health
insurance unless it's employer.provided. I mean, there's
just not that many people buying individual policies. The individual
market has its own set of issues.
So the employer.based market would be the place. At this point
or up until this point, there are very few employers that have been
willing to pay for it. And so what are they doing? They're
paying for the administrative structure. They're shopping around
on the part of employees. They're negotiating it. They're
opening up the administrative structure so that it makes it easy
to sign up and pass your paycheck to that insurance company.
Of course, you're going to have to stay with that insurance
company when you change jobs because you have bought it for a lifetime.
And so if the next employer offers it, you're going to turn
Even in the best of cases, where the employer really believes
in this and is really behind it and puts a lot of effort and makes
it the forefront of the employee benefits fair and all of that stuff,
the best they have ever gotten is a sign.up rate of 15 percent.
It's usually around two or five percent.
PROF. GEORGE: Why? Why?
DR. FRIEDLAND: I think, (a) some people do the math and say,
"It doesn't make sense"; (b) it's too expensive
for some people; (c) there may be some elements of denial involved
in that "I'll never need that because I will never be dependent
on others." So it's a combination of factors.
FR. FAHEY: Well, of course, Medicare covers it.
DR. FRIEDLAND: And, of course, Medicare covers it and/or you
think you might be able to .. some people seem to think that people
know about all the Medicaid rules and, therefore, could gain Medicaid.
But there are a lot of reasons. We don't know the full reason.
It's a hard thing to buy. I mean, just think about it as
a product. It's a hard product to buy. If you buy and they
improve the product ..
PROF. GEORGE: You're stuck.
DR. FRIEDLAND: .. you're stuck.
Now, I would feel differently about this discussion if long-term
care insurance covered long-term care. If it weren't just prefunding
a fixed dollar amount that you chose, then I think it would be a
very different kind of discussion.
It wouldn't necessarily be cheaper. Even if the pool were
bigger, it may not be cheaper because long-term care can be very
expensive but if you really insured the risk, which is not something
the insurance companies have been willing to do.
In part, I understand why. In the beginning, they didn't
know what the risk really was. So they said, "We're not
going to take a risk." The risk will be that .. I mean, there's
very little risk. The risk is that they don't earn the rate
of return in the marketplace with the pool of money that they have
that they expected. That is the risk that they take. And they
are professional money managers. You know, they manage life insurance.
Now, getting back to your other part of the question about who
does better, you know, some of it has to do with relationships with
agents. In farm states, people have very good relationships with
their insurance agents. In less rural states, they don't have
an ongoing relationship with their insurance agents.
PROF. GEORGE: Is that reflected in the sales?
DR. FRIEDLAND: Yes, very much so. So in farm states, you find
that the larger proportion of the population has it because it requires
essentially an individual trusting that agent to help them, guide
them in both not just that they need it but which policy to get.
It's so complicated because it is the ultimate consumer choice.
You get to choose every aspect. Is it a 30.day waiting period or
90.day waiting period or zero.day waiting period? Is it one.year,
five years, lifetime? Is there an inflation protection adjustment
or not? Is it not for insurer benefit or not? You get to decide.
Is it $100 a day, $200 a day, $500? You get to decide, ultimate
So which one do you choose? When you buy auto insurance, which,
of course, you're required to in most states, I believe in all
states, you base it on the value of the car and whether or not you
want the collision. When you buy house insurance, you base it on
the relative value of the land and the house.
When you buy life insurance, you base it on current income standards.
And when your income changes or your dependents change, you change
your life insurance.
But you can't do that with long-term care insurance. You
buy it once. So I don't know if all the decisions not to buy
are rational or they're just so confused they don't make
the decision, but I don't know. I've been trying to understand
that myself, but I don't know the answer.
It's a very hard decision to make. It's a very expensive
decision. I'm not talking about the premium. You're paying
the premium for the rest of your life, assuming it doesn't even
go up. Of course, they have reserved the right in the small print
to raise the premium if they guess wrong on one of those factors.
And will you have the income when you're not working to pay
for the premium? Now, you're supposed to with the agents.
I mean, the National Association of Insurance Commissioners doesn't
dictate state law, but a lot of state legislatures have adopted
the kind of guidelines from the National Association of Insurance
Commissioners. So in most states, you have to talk to the client
or the customer about the feasibility of paying for the insurance
premium when you're not working anymore.
So they're supposed to go through a calculation of how much
they're going to be able to pay, but what if the premium goes
up and it's just a little more than you expected because you
didn't expect these other things to go up?
Some companies have done a great job in terms of marketing and
positioning and the relationship they have with their agents. And
maybe their distribution mechanism is more efficient and that's
why they stay in it.
I look at TIAA.CREF and say, "I think they got into it for
the right reasons, and I think they got out of it for the right
CHAIRMAN KASS: Rebecca Dresser?
PROF. DRESSER: I was wondering if each of you could give us
2 or 3 of your top priorities in terms of policy interventions or
maybe it's such a mess that you would have to have 20 priorities?
But you've given us a huge amount of information. And it's
really fascinating, but for people who aren't experts in this
field, what would you say is most important?
DR. FRIEDLAND: You know, there is a practical answer, and then
there is the pie in the sky answer. I think the practical answer
is to help change the language around the tax credit for caregivers.
You know, that is something that .. actually, I'm going to take
a big step back.
It has surprised me that the insurance industry has not gotten
the number one thing they want, which is above-the-line deduction.
What I mean by "above-the-line" is it's not itemized.
So it's above line 33 or so on your 1040 form for the insurance
I'm surprised in this Congress and this administration that
the insurance industry has had a tough time getting that passed.
I think part of it is because it's not a high priority, even
in a business-oriented Congress and White House.
It is very likely that will move. And it is usually tied to the
caregiver tax credit. And so maybe changing the language about
why we value caregivers might be a practical step that is doable
in terms of the discussion about that tax credit.
Will it change ..
CHAIRMAN KASS: I am sorry. I'm not absolutely clear. I'm
not absolutely sure I understand.
DR. FRIEDLAND: The credit?
CHAIRMAN KASS: No, no. What kind of language you were recommending.
Change the language from what to what?
DR. FRIEDLAND: I think it is being sold as a way of helping caregivers.
I think it should recognize that it will not help caregivers, that
it is an acknowledgement. Regardless whether the amount is any
different, we're talking nuance here.
It is an acknowledgement that caregivers deserve to be treated
differently if their income tax is the same as someone else who
is not a caregiver and we as a society recognize the value of caregivers
and, therefore, acknowledge it in the Tax Code and, therefore, provide
a tax break for being a caregiver.
That would be an easy first step. And it's a public discourse
of why caregivers matter. Then at least you could, at least through
this reporting mechanism, begin a dialogue about why caregivers
matter and why long-term care is in a mess. And, you know, caregivers
matter because long-term care is a mess.
And even if we did a better system of long-term care financing,
caregivers would still be a part of the picture. But we need a
desperate way. Desperately the next step would be more the pie
in the sky. I think the desperate issue is the nexus between paid
caregiving and family and how to figure that out in terms of meeting
the needs of families.
We don't do a very good job at that. Cash and Counseling
is an example where we can do a better job because we're not
relying on an agency where you're depending on someone bringing
someone in who does or doesn't show up.
But no one is really talking about expanding coverage in a big
way. And it doesn't seem like it's politically viable.
But maybe a discussion about why caregiving is so critical to the
system and why the system is so hard on caregivers could lead to
a discussion of why financing long-term care needs to be revisited
and needs to be improved.
DR. FOSTER: I wish that you would make it clear to me why
a $3,000 tax credit would in any sense really change the system
in terms of the discrepancy of the money that's needing. Do
you think that the caregivers would then enhance their care, spend
four hours taking care of mom, instead of two hours, because they
feel a sense? I mean, I'm just not following why.
I sense your love for caregivers, which I think is very, very
justified. I mean, I think a lot of them are heroines. I mean,
that's what they are. I guess most of them are women we have
heard, are heroines to do this.
But I think it seems to me that that would be a diversion from
the real problem. That is, the last point you made is how to subsidize
the care that cannot be given at home by having somebody come in
in real dollars, as opposed to a tax credit.
I just don't understand why you think that is so important
except to be sort of a slogan to say, "Well, we love caregivers."
DR. FRIEDLAND: Exactly. I don't think it's important
at all. I'm not in favor of it. But it's moving for political
reasons to placate certain parties.
DR. FOSTER: But then shouldn't our job be to say that's
not a very wise thing to do and we ought to go to the real issue?
What I'm afraid of is that it might be taken away from transcripts
here or something.
In fact, I got the impression that you were for this. You just
clarified that by saying, "Well, I'm for it in the sense
that it's moving ahead. It's moving ahead. Maybe we ought
to try to get it better."
But if what you just last said, you're not really for this,
and I just didn't want it to come out of here that the number
one priority would be that that's what we would work on, I would
say that your last statement would say we might notice that that
is something that is moving. And then that is not quite the way
that we ought to go.
DR. FRIEDLAND: It is moving because of what I find even more
difficult to accept, which is the public money to provide subsidies
for private insurance. That's the reason it is moving.
It is being put on the table as a way of placating those. And
I'm not one of those because I'm not a player that matters.
But for groups that care about providing a toe hold for the tax
credit, this becomes a starting point.
The reason it is being pushed on the table is because of what
I find even more difficult to swallow, which is giving people who
would have bought the insurance anyway the tax deduction or a subsidy
for their insurance.
DR. FOSTER: We have been talking about long-term care here
and Medicare. And there's a whole problem of Medicare, which
is not nearly as important the people who have spoken to us say
as long-term care. But if you were really just looking at the problem
as a social engineer, wouldn't you just say we ought to combine
these problems; that is, the failure of health care delivery in
the medical sense and the long-term care to say we need some sort
of a system that assures in this very wonderful and caring company
that people who can pay ought to pay and people who .. I mean, you
would expect somebody that was .. you know, somebody like myself
should not be funded for this because I could probably take care
of it myself, you know, long-term care, even if I live to be 97
or whatever, whatever it is.
I mean, it seems to me that even dividing up this issue is not
.. maybe it's just what you have to do, but it would seem to
me if you're looking at it, that it's bizarre if you're
trying to get the best possible solution for the country to say,
"Well, we have got a problem with people who can't get
Medicaid or Medicare. And we've got a problem with long-term
care" when I would say how can we reorganize society in such
a way that we can go through first age, second age, third age with
assistance to those who need it drastically and it probably in my
sense, even though the quantity of dollars may be higher, I'll
bet it would turn out to be cheaper than trying to do it broken
DR. FRIEDLAND: I couldn't agree with you more. I have always
been perplexed by the notion that if I have a heart attack, it's
fully covered and I don't have to worry about asset transfers
or anything but if I need the social support services following
that stroke or whatever that is, I'm in trouble. I mean, I
have never understood that. So I agree with you completely.
But the truth of the matter of the fact is that that is not the
way the public discussions are going. All of a sudden, the Congress
realized there was a risk that wasn't covered in Medicare called
prescription drugs. It wasn't a new thing, but it was discovered.
And, therefore, there was a movement because the timing was right
politically to expand Medicare into prescription drugs.
That time has not come for the other risk, which was long-term
CHAIRMAN KASS: Sorry. Father Fahey still wants to respond to
Rebecca's question and anything that has happened since or before.
FR. FAHEY: I think that this value of a commission like your
own is to help forward the public dialogue and as I in my halting
way was trying to even define what it is, the hurt, we're trying
to deal with.
We got to where we are, Bob averted to it, that the Medicare benefit
that is used partially for long-term care was merely to reduce hospital
days, kept people out.
When Medicaid was passed, they didn't have the vaguest idea
what it was going to do, you know, Curt Mills. Somebody said Mills
wanted to get his name off, Curt Mills. But it was very uncertain.
And then, of course, the states ticked it up and ran with it. But
it became overly medicalized right off the bat. So we have defined
long-term care, by and large, as a medical problem.
Nursing homes. What do they look like? You might as well have
had one architect make every nursing home in the whole United States.
Forty beds. Stack them up or make them go out long distances and
have nursing stations in the middle and so on and make sure they
have all of the characteristics and, again, make sure they're
safe. That's what the regulations say. And through the Medicaid
system, make sure people are rehabilitated. It doesn't say,
"make them comfortable" or "make sure they get hugs"
and things of that sort.
So I think it will take a while, but I think redefining what the
issue really is and how we try to address it is a .. and, as I say,
I think it is a question of progressive frailty over time that happens
differently to different people that ultimately gets to a point
where it is so costly that a person cannot reasonably be expected
to deal with it. And we ought to have a huge risk pool to deal
with that relatively small group of people who will be in that kind
of need over time.
So it's redefining, if you will, the problem and approaches
to it and not so much .. see, right now it's all provider-driven.
Who are the insurers? Who run the nursing homes? Who are the providers
of care? And it's their interests that tend to be paramount
in the political discussion, rather than the users of all of these
And it takes people of the knowledge, skill, commitment, and understanding
of yourselves to put this into the public domain for a different
kind of discussion.
CHAIRMAN KASS: Let me fumble my way to a question. Notwithstanding
the fact that family structures are not what they used to be or
neighborhoods of the sort that your parents lived in, at least for
lots of people, especially in big cities, not what they used to
be, it's still the case that not only our families, where the
families exist, the major providers, but that seems to be the ethos.
Jim Wilson, oh, it's four or five meetings ago, regaled us
with the social science study in which Americans were asked when
the elderly are incapable of looking after themselves, who do you
think is responsible for their care. In the United States, something
like 85 percent said it's the family's responsibility.
That same question in Sweden produced an answer of 11 percent.
Now, that has something to do with differences of culture but
also differences of expectation in terms of government provision
of health care and other social welfare programs.
I take it neither of you are inclined to say that .. well, are
you inclined to say that this particular kind of notion of Americans
for personal responsibility and familial piety and responsibility
and add to that, at least in some quarters, a kind of suspicion
that the government ought not to be doing things that turn us into
more like Sweden with respect to this sense of at least local solidarity.
But it seems to me you are saying that we should, as much as possible,
support those people inclined to give care with respite care and
funds and safety nets and things of that sort. You're not in
a way trying to undermine that. You're trying to strengthen
At the same time, though, you're trying to produce a sense
of communal solidarity that isn't somehow family-based and individually
driven but in which people are supposed to somehow understand that
there are lots of people without families, that there are lots of
people who can't afford care or can't get this insurance,
they're not all the beneficiaries of faith.based communities,
which will reach out and send in caregivers one day a week or do
something like that.
So the question I suppose is, how does one in this particular
community mobilize support to think of these things not family by
family, me in mind for ourselves, but to adopt this kind of view
of at least a communal obligation for .. let's speak modestly
.. those who simply cannot do this for themselves and don't
have the kind of resources to do what is minimally necessary or
We're not very good at this in terms of communal discourse.
It's not been our way, though. You know, you have a hurricane.
And the generosity of the American people is astonishing. And,
yet, for the things that are not presented as catastrophes and emergencies,
that are simply the enduring problems of the same magnitude, it's
very hard, especially if you're not trying to turn this over
to the impersonal providers but wanting to somehow keep the personal
and familial focus on this.
How does one go about generating the kind of interest and sense
of communal responsibility to do what is modestly decent, not pie
in the sky? And where would you see the ability to mobilize the
interests and the political will to do this?
FR. FAHEY: You know, I am inclined to think that it already
happens substantially in areas which already have a sense of community
in which there is propinquity of interest and so on. You know,
being a parish priest, as I am. And I don't mean just faith-based,
but in Liverpool, New York, where I keep a robe and a parish, it's
small enough and it's big enough. It's an amazing amount
of solidarity that is there.
And, frankly, you mentioned big cities. In some ways, big cities
aren't so bad either because, at least from people, they've
got a doorman downstairs and they've got all kinds of stuff
within relatively easy.
Suburbs are the disaster, where there is no sense of solidarity
that started up. There are no sidewalks. There aren't communal
places for people to come together. They go to school one place,
church to another. They go to the mall over here and all of that.
So in some ways, it's the great American suburb, I think,
that's the problem and the gated communities, where, instead
of having the .. again, the sidewalk and the front porch, you've
got the barbecue pit in the back and you've got the garage in
the front. And nobody ever sees one another.
This is idiosyncratic is my own experience in many different places
as a priest. Where you have relatively small areas and where people
do stuff together, it's an amazing amount of solidarity and
help for the older person or the frail person or the person with
the disabled child. An awful lot of good stuff goes on. There
is something evil about size.
CHAIRMAN KASS: Then is your counsel that these really are matters
for state and especially local government and not even local government
but some local .. how does one mobilize from the point of view of
the national government, the kinds of changes of incentives or the
development of the kind of either social insurance or welfare benefits
that would provide the things that are, in fact, needed in this
I think this is not unrelated to .. I'm trying in a more general
way to ask Rebecca's question, really sort of thinking more
FR. FAHEY: Is it a governmental issue? Is it a governmental
issue? You know, you separate out the functions of instrumental
health effective care and finances.
Obviously I think in terms of equity and adequacy that probably
the federal government with its ability to tax and do it across
states and so on is a place in which some sort of adequacy and equity
can be developed as far as finances are concerned, but in terms
of basic human interactions, I don't think that is the role
of government at all.
CHAIRMAN KASS: On the other hand, if you decide that Medicare
pays for this and not for that, you wind up having people brought
into .. we heard about this earlier. One changes the behavior of
people in terms of what it is that the community has agreed that
it will pay for in a system which was designed to deal primarily
with acute care, not terribly well.suited to the .. I mean, we are
aware of the problem.
The question is, how does one sort of mobilize the interests and
the political strength to provide these kinds of whatever it is
that the federal government can do unless one thinks it's really
not a federal government problem?
FR. FAHEY: I think the people are really going to push the state
government towards the federal government because they're getting
frightened to death.
The enormous liability of the states under these today, to say
nothing of tomorrow, I think it will see some realigning of the
notion, strictly the financial side of it, of states pushing very
hard for the federal government.
There have always been cross-subsidies. This is ironic. Medicare
has subsidized long-term care by paying more for those people that
are in long-term care. State government underpays for long-term
Now, Medicare is being .. they're taking away the subsidy
in the long-term care system. And the states are taking it away.
And, of course, all of this stuff about burdens, it's now being
shoved downward to families, to individuals, and so on, in a whole
variety of ways. Now, how we switch that around, I don't know.
DR. FRIEDLAND: I think in my mind, there is little question that
when it comes to the financing part, it has to be through the funnel
of the federal enterprise.
There's no question that the Medicaid programs now are on
the ground. They know who the players are. So they have the most
direct impact on the infrastructure.
But the infrastructure in home and community-based care is not
very well.developed, in part, because the way you get money as a
provider is to cater to Medicare, post.acute care, or post.acute
care in Medicaid.
So what the world could look like is not very clear because there's
been a very limited market for interventions that fuel .. my way
of thinking about it is for those with families, we're not going
to lose the family. The issue is, how can you sustain them to do
it longer and to do it right so that they don't give up or they
don't lash out, they don't inflict pain in their anxieties
or in their guilt or in their frustrations?
So I think in general, the family has to have control, but how
do we do that? We don't do this in federalism. If we give
money to the states from the federal government, we want a lot of
control over that from the federal government. If we give it from
the states to the family, we want a lot of control in it.
So I don't know how we get there. Cash and Counseling is
an example of where an experiment, a demonstration, for example,
where we have given the authority to spend the public money into
the hands of the family.
Now, perhaps the evaluations of that will be so successful that
families can be trusted and to use that money because it's really
about using money to integrate to the arrangements that you need
in your own family circumstances.
We don't have examples where that is. I concur. I don't
know that there is an easy answer. But I think given that we have
states with lots of effort but little resources and we have got
states with lots of resources and no effort, we need in terms of
funneling the money the federal government.
How the federal government can do it without putting their hands
on the rules on the state government completely and how the state
government can do it without putting all of the rules on the consumer
is an experiment in motion, in action now with Medicaid.
But there are very few examples of what where we let consumer
or family .. most of the focus, I think this is a big difference.
Most of the focus has been on the person who needs the care and
not the caregiver. So the beneficiary is never the caregiver,
but if we can change the language so that the beneficiary includes
the caregiver, then that helps.
FR. FAHEY: Let me make a comment, if I may. Also, must of the
help is through entitlements to individuals who are in need. In
some ways, what we are talking about are communities in need.
And while there have been some funds, community development funds,
or .. really, the Older Americans Act was meant to be this, but
it has never done that.
I know that several of the places that I am engaged in, upper
Manhattan, which is a Dominican sea, Dominican order, the country,
that much of what we're trying to do up in that area is to mobilize
that community as a community, sending a trustee down in the village.
Again, there is an amazing solidarity within the village of all
kinds of different people, all kinds of different backgrounds.
But what we're trying to do is get the bartenders and the
firemen and the postmen and the neighborhood stores and a whole
variety. And we're calling it the age.prepared community.
With Governor Kempthorne, we did some work out there in terms
of rural areas, which, again, using the word "cobble,"
that need to cobble stuff together that doesn't fit nice entitlements
but, rather, where somebody exercises leadership to facilitate people
coming together and do whatever needs to be done with whatever resources.
Again, it's not comfortable to give money out there with a
lot of strings attached to make that kind of thing happen.
CHAIRMAN KASS: Thank you very much. We are at the end of this
session. Thanks to both of you for an interesting and very, very
The Council members, all of us, who missed dessert, dessert is
upstairs in the Hospitality Room for anybody who would like.
Let's reconvene in 15 minutes, at 10 after 4:00. We'll
have an hour to have our last session.
(Whereupon, the foregoing matter went off the record at 3:55
p.m. and went back on the record at 4:24 p.m.)
SESSION 4: ETHICAL CAREGIVING IN
OUR AGING SOCIETY IV: CONCLUSIONS AND FUTURE IMPLICATIONS
CHAIRMAN KASS: This last session is devoted to our own
discussion amongst ourselves of the conclusions and further implications
of the report. A difficult task, to get a way to do so, without
referring to the document itself, which you have all read from the
comments that have been made apart from some particular difficulties
with certain passages.
I think I have sensed that the sort of provisional conclusions
that have been developed have met with general approval, but I don't
think one should simply rely on private communications, so we should
have a session where we talk this through.
I don't think I need to rehearse very much about the document
itself and the major findings. If we were starting on time, I would
do that, but in the interest of finding out where people in the
group are, I think we should throw the floor open for comments on
where we come out.
I think everybody understands that this is but a small portion
of the larger subject that we have been talking about. Our visitors
today have made that perfectly plain to us. As much as they approve
our taking up this subject and even see the value in this portion
of the subject that we have tackled, it's perfectly clear that
there is a need for much more work in this area and well.coordinated
at a higher visibility, both in terms of collecting reliable data,
commissioning empirical research and especially trying to think
through really carefully with the kind of expertise that this Council
does not now possess, including expertise in economics and insurance
and in institutional design and the like, what kinds of feasible
and possibly effective policy reforms might be available that could
increase the capacity of families to care and to provide a kind
of safety net for those who don't have families to care for
them at all.
And one of the things, as you know, that we will be encouraging
and speaking explicitly about, without at this point discussing
that particular part of our conclusion, is to acknowledge the limited
character of what we have done and to call for further work of this
sort, much to be hoped for with participation of an ethical and
humanistic and not merely an economic perspective but, nonetheless,
to do things that we have been able to call attention to, but I
don't think are ourselves in a proper position to take up.
With that, by way of introduction, I would like to open the floor
for comments and see where we are. Mary Ann?
PROF. GLENDON: I think this report .. and I think what
I am going to say is true of all of the reports that this Council
has produced .. I think it has vividly shown us the truth of de
Tocqueville's warning that something that would be very difficult
for a democratic republic would be to plan for the future.
And he said that it would be the task of moralists .. that was
his word .. and statespersons, to help democratic republics with
this problem. And if we could, broadly speaking, describe ourselves
as moralists, I think in this report and in the others that we have
produced, we have gone a long way toward living up to that exhortation.
But, of course, the other group that he invoked was statespersons.
We're not statespersons except perhaps Leon, the chairman, is,
but I think we have done a great deal in addressing statespersons.
And we hope that we have been helpful to them.
Planning for the future, I am so grateful to all of the people
who spoke to us today for emphasizing that it is not some remote
long-term future that we're talking about, nor are we talking
about some contingent future problem, something that like a storm
might seem to be headed in our direction but might veer away harmlessly
at the last moment.
It is absolutely certain .. and our speakers today have underlined
this .. that we are already, every American family is already, touched
by the problem. And we have only seen the beginning of it.
So I think we have done an important service. We have done what
we as a Council were constituted to do by calling attention to the
problem, by illuminating the human and ethical dimensions of a problem
that risks being treated simply as an economic problem or a problem
to be hashed out with the clash of competing interest groups.
So if we have done something to alert statespersons and persons
who will participate in the public discussion to the human and ethical
dimensions, we will have done a great deal.
What remains to be done, I don't want to repeat what Leon
said but just to underline it, there is a great deal of empirical
work that needs to be done. And there is a great deal of policy
thinking that needs to be done.
I would only add because I am involved in another body that has
taken up this range of questions, I would only add the hope that
the demographic situation that we're dealing with, that we would
remember that the demographic situation that we're dealing with
involves not only the greater longevity and the scarcity of caretakers,
what we have talked about today, but also the declining birth rate,
which means that there is another group that, like the elderly,
risks being marginalized and forgotten in our society. And that
is children, young people, and child.raising families.
So while underlining where there is a great deal of work yet to
be done, I think that we can congratulate ourselves on having produced
a document that I think — all credit to the people who did
the writing and the endless rounds of editing — that is a
real contribution to one of the most difficult social problems that
this country will face.
CHAIRMAN KASS: Peter?
PROF. LAWLER: With all due respect, I'm going
to correct Mary Ann on de Tocqueville in one respect. Here is what
de Tocqueville thought would happen. We would become apathetic,
docile, subhuman herd animals. We would lose all conception of
our individual futures and turn everything over to a schoolmarm
state or something like that.
Well, that hasn't happened. Americans are more obsessed with
their individual futures than ever before. The safety nets are
falling apart, including the safety net of government, the safety
net of pensions and so forth.
So what we're not so good at is planning for our futures insofar
as we can't take care of our needs as individuals. So the report
uses all kinds of terrible countercultural language, like solidarity
and common good.
As Frank pointed out this morning, this language is less fashionable
in America than ever before. It's not so much we should blame
conservatives, but we should blame the general libertarian drift.
There are conservatives who are not so libertarian and liberals
who are libertarian.
So this is what I worry about when reading this report. This
won't resonate in America the way it should because here is
one word that doesn't show up in this report hardly at all,
"rights." So Americans are being challenged to think
in a way that Americans don't ordinarily think. I hope it works.
I was mighty depressed all day because, first of all, every time
I hear about Alzheimer's, I think I have it but also because
of the problems brought up this afternoon.
I didn't hear any solution that was adequate to any of them.
All the solutions, I'm not going to go into all of them now
except there are two kinds of public policies the report points
to. Number one would be that decent health care for all Americans
somehow, especially long-term health care for the frail, demented,
people with dementia and so forth, but the other kind of program
is programs to help out families do what families are inclined to
do. So I hope this is in the transcript.
My wife runs a program which is basically day care for old people
with Alzheimer's, early and mid-stage Alzheimer's. It's
run partly off of Medicaid. And Medicaid is not nearly enough.
And under this administration, she has been cut big time.
It seems to me that lurking in this report is almost an American/Catholic
principle of solidarity. Insofar as we can, we should use the government
to encourage Americans to do what the unsaid Americans are inclined
to do: have families take care of these problems.
But that is going to cost some lot bigger bucks than we have spent
on that so far. So in terms of the common good, decent care for
everyone, in terms of the common good, we need programs to help
families do what families are inclined to do.
CHAIRMAN KASS: Robby?
PROF. GEORGE: Well, I am much more hopeful than brother Peter
Lawler about our report.
CHAIRMAN KASS: You are or are not?
PROF. GEORGE: Are.
CHAIRMAN KASS: Are.
PROF. GEORGE: Much more hopeful about how our report will be
received by the segment of the public that does pay attention to
these things. And that is not an insignificant segment of our public
I am pleased to say.
I don't think that Americans are so obsessed with rights and
laws that they have lost interest in right and wrong. And this
report is rooted in principles that I think are among the best that
we as Americans have historically affirmed and principles that we
have held up high, held aloft for the people of the world to consider;
above all, the principle of the inherent fundamental worth and dignity
of all human beings and, indeed, the equal worth and dignity of
all human beings.
This report begins, continues with a ringing affirmation of that
and on that basis is able to grapple with serious issues about death
and dying in the modern context, facing up to challenges presented
by modern technology, including biotechnology, and is able to deal
seriously with real problems of unreasonable over-treatment or relentless
or burdensome treatment and I think, therefore, will be taken seriously.
I think it is also remarkable, frankly. And here let me begin
by confessing that I was wrong at the beginning when we were contemplating
doing a report like this and I warned that we would simply fall
into squabbling over fundamental ethical questions and would not
be able to produce a useful report.
Reading this report, seeing how we have been able to join in a
set of conclusions and recommendations that we can all affirm or,
if not all, there may be some dissent but substantial, where we
have substantial unity, I think that we have accomplished what I
said we couldn't accomplish.
And given the pluralism on the Council, the diversity of opinions
on the Council, which became very clear in our first two years,
I think that the public who is interested, the segment of the public,
who is interested in these things will find that that is quite remarkable
So here we are, a very diverse group. The evidence is clear on
that, a very diverse group of people, people with a lot of different
ideas. Affirming a report built on a set of common principles on
which we have been able to move to a set of common conclusions and
recommendations and not because the conclusions and recommendations
are trivial, minor things but because we have been able, together
with the help of our staff .. and I particularly congratulate Eric
on this .. we have been able to think through the problems very
Now, it has been pointed out several times by Leon and others
that what we have produced here is something that is limited. We
only address a small portion of the problems. Well, yes, but, look,
the problems that we do address, while a small portion, are serious
problems. They're not easy to think through. And I think the
report thinks them through very well. So I think this is an accomplishment.
CHAIRMAN KASS: Gil?
PROF. MEILAENDER: What interests me is sort of what the report
grew into because it grew into something that I don't think
we originally had in mind. We started off with the notion that,
partly just for reasons of time, we would produce a rather modest,
small, focused report. And we began that way. But it has turned
into something that is considerably larger and goes beyond that.
So that the initial focus, really, on kind of procedural ways,
like advance directives, of dealing with decisions ballooned into
a much larger discussion of these things. Maybe that's instructive.
Maybe it has to. Maybe the large conceptual issues, in fact, must
So I think we have accomplished several things. I think in terms
of the larger issues that it ballooned into, we have reaffirmed
or rearticulated some principles that have been around for a long
time, some of which Robby just noted.
I myself think that if you once say that assisted suicide or euthanasia
are not the way to fix these serious problems, you will, in fact,
be driven to something like the principles that we reaffirm in the
last chapters of the report.
And I think that the stuff we say about a more modern focus, with
which we started, is also important and well-said. We call attention
to some degree to the scope of the problem, maybe not as if nobody
else ever saw it or thought of it or could do it, but we call attention
And we suggest that purely procedural ways of making these decisions,
though they may be useful in some respects on some occasions, cannot
really solve the kind of caregiving dilemmas that we face.
And then once you have said that and once you have ruled out for
yourself something like assisted suicide or euthanasia, it drives
you on, maybe inevitably, to the sort of larger .. to the reaffirmation
of the larger kinds of principles that we came to.
So it's, in my mind at least, a sort of circuitous route by
which we have arrived at the place we have arrived, but it may make
sense and may be understandable and I would hope useful.
CHAIRMAN KASS: Rebecca?
PROF. DRESSER: There are two dimensions of this report that
I find especially positive. One is that we have named this as a
I am one of the few people who sort of has a bread and butter
of bioethics, in my teaching and my work. And I get frustrated
with my field being so focused on cutting-edge research, future
possibilities, you know, designer babies, all of those things.
And I don't think we pay enough attention to the everyday
medical ethics problems that people are struggling with right now.
I think that the other problems are in some way more fun. But I
think it is irresponsible to pay disproportionate attention. I
think we do pay disproportionate attention to them. And I think
it is irresponsible.
So I am very pleased that our Council has put the stamp on this
as an ethical problem and a bioethical problem. And the second
thing I am pleased about is that we discuss the treatment issues
that are distinct for this population. I think that there has been
a lot of work in end.of.life care and decisions about treatment
for incapacitated patients, but I don't think it is focused
enough on this population. And the real subtleties, the individual
situations of the patients, the challenges of caring for someone
who is older, gets dementia, then gets all of the other problems
that come along with aging, can live for quite a few years...
Questions will come up and will primarily affect someone who remains
conscious and someone who really experiences these interventions
in a personal way. So it's not as if it's someone like
Nancy Cruzan or Terry Schiavo. These are conscious patients. And
we have to really keep that in mind.
So I think that it is a very complicated treatment decision.making
situation. And I think this report does a wonderful job of delving
more into the details than any other public document. And I am
very pleased by that.
CHAIRMAN KASS: Paul?
DR. McHUGH: Yes. I never want to come after Rebecca. I mean,
she says things that I want to sit and wait and just take them all
in because they're important.
I agree with what she is saying and what other people are saying
here. I want to come to talk about the conclusions and recommendations
here, some of them particularly, and why I like them and support
them, but I would also like to remind us of our previous reports
and the enterprises we have had because they are for me very characteristic
and embodied in this report.
This is something of a contrarian committee in ways even within
itself. And I am very happy about that as a doctor and as a person
who works with patients and wants to help them and families see
their way through various conditions, including these matters.
Certainly I spend much more time with what Rebecca refers to as
the "mundane" of the bioethics side than the esoterica.
I like that, and I like what we have done.
In fact, I was thinking of this just the other day when Leon asked
me to speak about this and said to myself, "Well, you know,
the great thing about this contrarian committee is that it confronts
something that Nathaniel Hawthorne has Hester Prynne say in the
Scarlet Letter, 'Beware of that which by long habit comes to
seem like nature.'"
What happens is that we start the habit by talking in certain
kinds of ways. Everybody is going to get so old. Alzheimer's disease
is going to kill us. It's going to be terrible and all of that.
But we’re not thinking about all the other things we have
in relationship to growing old. Positive things like family, grandchildren,
hobbies and friends.
And we have forever confronted these habits, some of which were
good and some of which were not so good, some of which we agreed
about, some of which we didn't agree, but made it so that it
couldn't just slip naturally into the practice and the thought
of Americans generally.
They may not like our reports altogether. They may stir up controversy,
as they certainly have. If I can come back to our old friend Hawthorne,
that is really what we have done.
Now, in the recommendations and conclusions here, again, I think
they speak to that matter. We, of course, as Gil said, have said
flat-footedly that we think that euthanasia and assisted suicide
are out. I agree with that, but I agree with that not only because
of what we are saying here, but I also agree with that, that this
is just an old idea that keeps cropping up again and again in this
And various people try it, and it always fails. It fails because
of the kinds of things we're talking about. It fails because
ultimately it loses itself, is abused in relationship to the kind
of people we are and we abuse it. And so we should speak out now
out of this experience.
The other thing that I like is we have our recommendation here
worrying about inflicting problems in the process of trying to extend
life. I certainly agree with that, too.
At a level of practical significance, the kinds of patients that
fundamentally come to think more often of euthanasia are the people
who burn out in the process of care. Very often the reason they're
burning out is simply because the doctors have been extending things
too far for them, asking more than they can deliver. And the burnout
case turns out to be a person who was just exhausted by the promises
and the suffering and all kinds of things, plus the idea that maybe
they feel they are a burden to other people. Never forget that
inflicting extra care on people is to ultimately burden them with
the burnout syndrome.
I like what we say about advance directives, and I like the fact
that we are more modest about it sometimes than I get. You know,
sometimes I get really zipped about them and wonder what is being
said. I don't like the term "living will." I think
that's too darn coy, and talk about dying here, but I agree
that we have voiced it in an eloquent and coherent way.
We don't, by the way, talk about that one advance directive
that I have begun to stamp my feet about, namely do not resuscitate
orders. We have data now that do not resuscitate orders fundamentally
means do not care. And the people suffer from that. Perhaps it's
just as well we don't put it in here right now because that
would do more damage than good perhaps.
Valuing the caregiver, as we come to speak about that, I thought
our speakers today were wonderful about that. We need to value
And those of us who grew up in families .. and almost all of us
did who are this age .. who were giving care in the process, I was
saying to Mary Ann, "Gee, people our age, when we were growing
up, gee, maybe one in three families, maybe even one in four, had
either an old, elderly, infirm, disabled person, or a disabled offspring
that they were caring for."
And the value that that was given .. by the way, that was given
value within the family. My wife and I have thought that much of
the good luck I have had in life has been given to me because of
the burdens my mother was prepared to take up in the care of elderly
people. And it worked in heaven, and they're giving it off
to me. Not only the sins of the fathers but also the goods of the
mothers live in the next generation. At least I've often thought
I would certainly like and support the idea that we should have
tax credits and tax benefits and make sure those things happen now
in this contemporary era.
What we're missing, of course, is we don't have enough
advocates, not simply for care but advocates that can put the flag
up there as a wonderful life. We don't have any Florence Nightengales.
We don't have the Mother Teresas that made people think that
this was a life that was wonderful to live.
As I was saying to Ben, you know, Florence Nightengale rejected
the idea of being a doctor. She really wanted to be a nurse and
transform the whole idea.
So valuing the caregivers is a wonderful theme in this. And then,
finally, I do think that if you are going to keep fighting habits,
particularly habits on the most vulnerable people, like we have
at this age, that we are going to have to have some kind of ongoing
commission that talks about what these issues are, does each one
in more depth than we have done it, and makes things happen.
I am very pleased with this report in every respect. And I have
full support for the specific recommendations that they offer at
CHAIRMAN KASS: Alfonso?
DR. GÓMEZ-LOBO: I wanted to add my voice to the chorus here.
I am deeply supportive of the report. I think that any reader would
come away from it having a sense of deep human compassion contained
in its pages.
And a way of facing a problem that does not turn its back on what
people really are, the demented people are really persons. In fact,
I would say underlying the report are some very important principles,
some very important principles about, first and foremost, a great
respect for the good of life, even in its diminished forms. And,
of course, there is the principle of equality, of treating equally
persons who may not be in their full display of their capacities.
On the other hand, I think that it is an important principle that
part of our lives, our lives with our relatives and with our friends,
et cetera, entails at some point letting go, letting die. And that's
a point where I sense that there is work to be done.
I think I hinted at this in the morning, namely that we have to
think more about the way of making the distinction between ordinary
and extraordinary means for the reasons I mentioned, that medicine
seems to be precisely working according to those principles, trying
to make treatments more beneficial, less burdensome.
I think this is not for this report but maybe for some future
thinking because if we stick to those criteria, I think we don't
have a reasonable way of arguing against medical obstinacy or the
burnout syndrome that Paul mentioned. And, again, I am pointing
to the future in that regard.
But it is important to affirm, on the one hand, the goodness of
life; on the other hand, the fact that it's not an absolute
good. It's a good that is frail and fragile and that there
are moments in which we just have to open ourselves to the fact
that we have to let go.
CHAIRMAN KASS: Peter?
PROF. LAWLER: Since everyone has been alluding to it, let me
say straight out the report recommends a presidential commission
on aging, dementia, and long-term care.
And someone might say the last thing America needs is another
commission. But let me make the strong point that this commission
is really set up here to be unique, understanding death not as a
problem to be solved but an experience to be faced.
It's not another Deweyian, New Deal pragmatic thing solving
pressing social problems, but it's kind of a neat and important
distinction that we as a people aren't particularly equipped
to think of death as an experience to be faced. But if a commission
can accomplish that, it would be quite a commission. And I'm
all for that. I was very heartened to see that.
CHAIRMAN KASS: Anyone else?
DR. FOSTER: I might make one comment and one comment only
before we adjourn to your house for a luxurious meal.
DR. FOSTER: I hope that the readers of this report outside
are at least ten percent as enthusiastic about our work as we are
enthusiastic about our own work.
DR. FOSTER: I know we had to exercise our deltoids so we could
pat our own backs, but I do hope that most people will look at the
report, rather than our own praise for the report, as good as it
I don't disagree with anything that anybody has said, but
it is kind of funny to listen here to everybody who says how great
we are, you know. And maybe it's because we're great.
CHAIRMAN KASS: Yes. It was making me uncomfortable. I thought
the only decent thing to do would be to offer some kinds of criticisms
of what we have accomplished, but the hour is late and that's
not the job of the chair.
I make one comment. Frank and Diana and Ben and Bill Hurlbut
may want to say something. The purpose of this was not to lavish
praise on the report but to make sure that we at headquarters have
not somehow misinterpreted silence from those quarters from which
we have had silence for profound disagreement that if we're
going to issue this thing, we want to make sure that indeed, although
some have had a larger hand in this than others, that this, in fact,
goes forward as the work of all of ours, knowing, of course, that
as this fractious bunch of professors is wont to do, there will
be people who will not leave well enough alone and will append their
I've even done that once on occasion. I think it adds to
the richness of a report which is produced by a group. And then
you have various kinds of personal takes for emphases and for enlargements
and for enrichments. And I am very proud of the fact that this
is a Council that has not submerged those kinds of differences and
I would say this. And before we adjourn, if the people who haven't
yet spoken want to say something and to be on the record on this,
by all means.
One thing, a comment that Gil made about how this little, tiny
thing mushroomed into something much larger. There was a certain
point where there was a great deal of skepticism after a discussion
of a very fine working paper that Eric produced. And, in fact,
he joined us for this, one of our number more given to skepticism
so he doesn't see how we're going to be able to do anything
with any of this.
At that point, Mary Ann was suggesting, well, we should write
a 20-page white paper on the looming crisis of long-term care and
be done with it, call attention to that problem.
Over here from this quarter, we have had the opportunity to give
voice to something for which Rebecca has been a pioneer for years,
calling attention to the limited wisdom of certain kinds of advance
instruction directives, wisdom but limited wisdom.
And then there were others who sat. And Bob Binstock in his presentation
to us said, "Look, if you can do something about talking about
medical decision.making to people who have impaired capacities and
show people how you might think about this seriously." I don't
know whether he's going to like what we've done, but he
certainly endorsed our taking this up as a serious problem.
At a certain point, the document looked like three disparate pieces.
And, in fact, even read in some way. There was something on the
dilemmas of an aging society. There was something sort of seemingly
freestanding on advance directives and then this stuff that sort
of followed on the ethics of caregiving.
But I do think that if one thinks it through, there really is
a kind of coherent argument in this work. And that namely is that
we begin, really, with the recognition of a certain kind of large
social problem, maybe not as large as it seems to the pessimists,
maybe larger than it seems to the optimists, but it's serious.
It's here. It affects most families. And it will affect more
families before it affects fewer.
Insofar as bioethicists have tended to talk about this problem,
they have tended along with the lawyers and following the precedent
set in the cases taken what's not simply a procedural solution,
but an attempt to get a substantive solution through this particular
legal procedure if Rebecca's corrections have been finally taken.
The insight is that, however useful that is, that is not going
to be a substitute for the necessity of caregivers, not least because
the caregivers decide not only the question about what treatments
the patient should not have, but what treatments the patient should
have every day of his life. And that, therefore, the need for day-to-day
caregiving requires one to think about, well, what are the goals
of caregiving and what are the boundaries that prevent the caregivers
from falling off the edge as they try to pursue and secure for the
patient his or her welfare, benefiting the life the patient still
has, no matter how reduced; and then to show the complexity of this
in action at not nearly the level of abstract principle to really
wrestle with cases, hard cases. They're admittedly schematic.
The doctors have been very helpful to keep us from falling off
the tracks altogether on those things, but to show that this doesn't
simply yield to principle. Principle sets certain boundaries, but
these are hard things. And the need for prudence and the difficulty
in the concrete define the right thing. Reasonable and conscientious
people are going to differ.
We have put that kind of picture together, limited though it is.
I think there is a kind of internal coherence. And there is a lot
more argument to be had about some of these things. Things that
were raised in previous meetings are still in the air, but that
we have been able to put together something like this and at least
make it a subject of wider concern and make it... people talking
about it is something that though I wasn't quite eager to do
this either, I'm very glad that we have done it and done it
And the last thing I want to say is that the massive credit and
thanks for this report belong to Eric, who is primary draftsman.
I hope he's not embarrassed to have that said. It was his vision,
the ability to see some of these things, and .. forgive me for saying
so in public .. with a kind of precocious gravity and extraordinary
human sensitivity that has found its place on every page of this
document. On behalf of all of us, Eric, a big thanks to you.
CHAIRMAN KASS: Ben?
DR. CARSON: I would add my congratulations because there
are so many very important points that have been brought up and
are well-discussed in the document.
I think it perhaps would be wise for us to acknowledge that it
is a work in evolution because our society is in evolution. And
clearly, as we note the actualities of the aging of our society
and integrate into that the technological advances, this document
will change as well.
CHAIRMAN KASS: Are we okay? Bill?
DR. HURLBUT: Just one little final note. When we started
doing this, I felt like we were in an awfully dreary field of thought.
And even the way we began our report with the term "mass geriatric
society" sounds kinds of ominous.
I just want to say personally, that in thinking about these issues,
as with the time when we thought about the issue of aging in our
"Beyond Therapy" report, I think there is something really
good about getting in, rolling up your sleeves, and dealing with
And I think currently our society has perhaps a disproportionate
fear of Alzheimer's disease, particularly. It's replaced
cancer as the great dread, serious problem. But in working on the
report, it became increasing clear to me, in spite of the fact that
we didn't come up with any direct solutions, it seemed like
a tractable problem.
It's not a problem where we're running out of oil or something.
We have the human resources to deal with this, I would think. And
in the process in mobilizing those forces, we may relocate a deeper
sense of hope in our lives and a deeper sense of meaning, both personally,
familially, and as a community.
I was struck by Peter Rabin's presentation this morning because
of the positivity of it, the hopeful dimensions that he brought
up. And I think we should release this report with a sense of hope.
CHAIRMAN KASS: Thank you very much. Excellent. Anybody,
I think everybody who wants to speak has spoken. Tomorrow morning
we start at 8:30. The plan will be to have the session, first session,
on "Taking Stock: Looking Back, Looking Ahead."
I hope all of you have received and read and should reread, if
you even read once, the substitute Richard Selzer's story, "Atrium,"
which will be the main focus of the discussion in the second session
tomorrow morning. We will have a small public session at the end
and adjourn around our usual time.
Adjourned until 8:30 tomorrow morning.
(Whereupon, at 5:07 p.m., the foregoing matter was recessed,
to reconvene at 8:30 a.m. on Friday, September 9, 2005.)