THURSDAY, September 8, 2005

Session 4: Ethical Caregiving in Our Aging Society IV: Conclusions and Future Implications

Council Discussion

 

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 and reassuring.

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 carefully.

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 emerge.

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 to that.

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 bioethics problem.

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 society.

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 our caregivers.

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 that way.

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 the end.

Thank you.

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.

Thank you.

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.

(Laughter.)

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.

(Laughter.)

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 is.

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 personal remarks.

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 those views.

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 this well.

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.

(Applause.)

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 these questions.

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.)