Friday, November 9, 2007

Session 6: The Ethical Foundations of Health Care

Council Discussion

I'm going to simply throw this paper open [for discussion]. [It] has been given to all of the members of the Council for their discussion.  Council members will recall, I'm sure, that yesterday afternoon we had quite an extended discussion of this topic, and I [hope I did not] read the mind of the Council... erroneously—that most of the members of the Council would be willing and think it important, as I do, to pursue the question of healthcare or medical care. 

We discussed it under several rubrics yesterday as a topic to enter into future agendas.  We also decided that the question of professionalism qua professionalism is not one we thought we could contribute to in any substantive way, but you also would perhaps not object, at least, when I suggest that if we pursue the question of healthcare and medical care generally, the impact of whatever we suggest on the physician and the other health professionals would be a legitimate topic to look at [as well]. 

So some of the things that were included under the rubric of professionalism could legitimately be discussed.  That remains for development and presentation before the Council in the future.  So this morning—the remainder of the morning—let's look at the paper that was prepared for us by Tom Merrill.  Anyone want to open the discussion on that paper?

...

PROF. SCHNEIDER:  My trouble is I know that what I'm going to say is going to be disagreed with by Peter, so I thought he ought to go first.

Well, what makes me nervous is I know he's going to call me un-American, along with quite a few people far more distinguished than I.  I thought that the paper seemed to be suggesting that what we might do is to talk about the various bases on which you would build a proposal for what you would crudely call universal access to healthcare.  I certainly think it would be unwise to try to resolve any dispute about what the best basis is.

My own inclination would be to imagine that there might be several bases, starting from all kinds of points, but which wound up at pretty much the same place.  And I think the way that you usually make policy in a country like this is not that you agree that there is a principle which ought to be implemented but that you agree that you have several different reasons for implementing something that you all agree on and in a morally pluralistic society, that's a very welcome and unusual sort of thing.

I think I've now set you up, Peter.

CHAIRMAN PELLEGRINO:  Peter?

PROF. LAWLER:  Well, at that level of abstraction, I agree with you, but there are two problems here.  In general, it's a very well-done paper.  It drew upon the great work of Dr. Pellegrino.  And so often we've come out against commodification, and surely healthcare shouldn't be considered a commodity like any other commodity like your split-level or your Explorer van or whatever.  But on the other hand, we heard a wonderful presentation yesterday that said healthcare probably should be more consumer-driven than it is now. 

So in a certain sense healthcare shouldn't be a commodity like any other commodity.  On the other hand, if consumers were better informed and took more ownership of their health, we'd probably have healthier people and costs would probably be less and so forth.  So somehow the commodity thing doesn't work for me.  The Rawls thing really doesn't work for me in understanding healthcare. 

For example, I agree with the disagreement with Dr. Daniels that we don't have an equal right to health.  Well, what does this even mean, to have an equal right to health, especially since the most important determinants of health apparently have little to do with healthcare.  We'd have to rearrange all society to make everyone equally healthy and so forth and have an equal opportunity for health. 

So I am really in favor of pursuing the issues raised in this report because the MDs on this Council were so moving in the need to do this.  And Dan, unfortunately, had to leave, so this is the last important issue we would consider.  We could end on a high note if we took on this issue. 

But I do wonder what we agree on finally, and this is sort of not a small problem, even though I am technically in political philosophy able to come down to Earth and say, "What exactly do we agree on in terms of what's wrong with the present system?"  I can only find three things we would agree on for sure. 

Everyone should be covered.  The defense of people not having insurance—I think our speaker was right yesterday.  Only certain Republicans and Libertarians would defend that.  There is, I think, an overwhelming national consensus on that. 

Number two, we have to disconnect insurance from employment, insurance from jobs, eliminate the perverse tax incentive that does this.  And this is why, to be partisan for a moment, the Democrats are winning on this insurance thing right now.  It's not because of concern for the poor, even though I and our great doctors here are very concerned for the poor; it's your average upper middle class American that I aspire to be someday who in our dynamic, increasingly individualistic society wants to be able to take risks, as Paul is always doing, with jobs but without taking a risk with insurance.  But when the job is connected to insurance, you really can't do this.  So most Americans are very open to a plan that would disconnect health coverage from employment.  And our development with this deep connection is perverse, inefficient, as we heard so eloquently yesterday.  So that's number two, disconnect health protection, health coverage from job.

And number three would be this problem of risk or risk factors that we heard from Mike yesterday and so forth.  As we get more and more genetic information it could be that more and more people would be basically uncovered.  So I have to have some way of spreading out that risk.  I have to admit, I don't fully understand this Swiss cartel method we heard about yesterday.  But if we keep insurance private, then we'd have to have some way of dealing with this, and I think perhaps we could keep insurance private and have some way of dealing with this.  Or if we went public at a single payer, then the whole country would share in this risk. 

So everyone has to have access to health coverage, disconnect from jobs, and everyone has to be covered even though they're covered with risk factors, genetic or otherwise.  Do we agree on anything more than that, and how can we wax philosophic on these minimalist things we agree on?

CHAIRMAN PELLEGRINO:  Thank you very much, Peter.  Dr. Bloom?

DR. BLOOM:  Well, I would like us to at least think about going beyond universal access.  It seems to me that if we were to suddenly have universal access, we'd have to be concerned that the capacity of our medical care system isn't up to having 45 million new patients brought into it and that we have consistently undereducated nurses for the last 15 years.  Schools of nursing have closed.  As we enter the 21st century and genome medicine, the ability of the physicians to keep up with both meaningful biomarkers of vulnerability to disease has to be devolved to another professional member of the team that will care for patients. 

I had communicated to Dan and to Tom the idea of hearing from Ralph Snyderman, who has come up with one such plan, but it's a way of maintaining the education of the physician and the care team and the patient and giving the patient responsibility for part of their own health.  It seems to me all of those have to be part of what we would call for in whoever the next leadership will be to create a new American healthcare system.

CHAIRMAN PELLEGRINO:  Thank you very much, Floyd.  Further comments?  Ben?

DR. CARSON:  Well, I definitely think that this is probably more than a one- or two-session topic.  When you look at the political landscape in this country, you know, everybody talks about the need for healthcare reform, but no one comes up with any meaningful solutions.  And that's not to say that we will come up with one, either, but I think we certainly have the firepower and the intellect to be able to make some very meaningful suggestions.  And I guess the real question is going to be how do we make sure that those are really paid attention to. 

I did a few years ago have the opportunity to talk to the President about healthcare reform, and before 9/11 he was extraordinarily interested in it.  But, of course, he's a lame duck now.  We don't know who's coming in next.  But we need to do it in a way that is absolutely nonpartisan, recognizing that this is such a huge issue and will become a much bigger issue as our population ages, and it's not something that we're going to be able to react to.  We have to be proactive in dealing with it or we will have an enormous crisis upon our hands.

And I think we're going to have to deal with the whole concept of personal responsibility, as Floyd said, when it comes to health versus health by government.  And I'm not even sure it has to be all one or all the other.  There could be some way that we could talk about a basic package of care that is available to every citizen of the United States and the possibility of people to purchase something a little more extensive if they so care to do that. 

You know, I was touched by the statement yesterday that 25 percent of the uninsured have incomes of over $75,000 and they decide that other things are more important.  Now, I'm not necessarily blaming them for that because everybody thinks that until they're in that situation.  That's sort of human nature.  We don't tend to think ahead and plan ahead. 

But I think a large part of our emphasis needs to be—and perhaps this is where Nick might be helpful.  We need to concentrate on ways of getting the cost of healthcare to a reasonable level.  There's no reason that a family making $75,000 a year should not be able to afford a good healthcare policy.  And, you know, the amount of money, as I've said before, that's already invested in our healthcare system is far more—far more—than enough to provide everybody with excellent care. 

So part of the ethical issue, as far as I'm concerned, is the enormous waste.  You know, someone made the statement that there really isn't that much waste.  That's a bunch of—well, there is.  And we need to bring in appropriate people to deal with that issue.  We need to document it, and then we need to come up with some real practical solutions that the average Congressman can understand.

CHAIRMAN PELLEGRINO:  Thank you very much, Ben.

PROF. SCHNEIDER:  You're one of the people who most powerfully persuaded me that the access issue was an important one to deal with.  And I think that's an issue that is so important that to try to accompany the discussion of that issue with all of these other kinds of issues will first be extraordinarily difficult just to do and second will dilute the message that you articulated so powerfully several times in the course of the meetings that I've attended.

There is a huge industry of people who are debating exactly these kinds of questions.  They disagree radically.  They draw on disciplines that almost nobody here understands.  I certainly include myself.  I am fully persuaded that it is better for us to understand more than to understand less.  I would certainly welcome hearing a wider range of healthcare economists, for example. 

But we all have our views about some things that it would be really good to change about the healthcare system.  Often those views are spottily informed, and I think that it's just not possible for us to acquire that kind of expertise.  We had dinner last night with Art Frank, our speaker from yesterday morning, and he was speculating on how different the conversations that we've had yesterday might have been had, for example, we had somebody who actually ran a hospital as one of the members of his committee or somebody who actually ran a drug company or and so on. 

And so I would think that what your goal really is is to try to persuade people of the single most important thing that you feel, which is access.  And that the goal would be then to try to write something that had some persuasive force to lots of kinds of people, and I would be inclined to move partly to our old friend of yesterday, narrative.

I think that we have no very clear idea in our minds, most of us, of who exactly these people are and what exactly it means not to be insured or not to be fully insured.  I don't think we have an idea—it's not true that these people never get any healthcare.  What they get is rather erratic healthcare.

They go to their doctor, and their doctor says, "This is what you need," and the patient says, "Well, that's a joke.  I can't afford it."  And at that point in my observation, what usually happens is the doctor becomes a social worker and the doctor begins to hunt around for ways in which the patient could find some kinds of funding:  "Well, we'll get you in this drug company's program, and then we think we know this clinic over here that will do this for you, and maybe we can arrange an extended payment plan for that."

I think some more concrete sense of how that world actually works would be an important persuasive addition to the more general kinds of ethical principles that we've been talking about.  But I would be very nervous about saying, "And if we just do this, then the healthcare system will become more rational," because we have been trying to do lots of sensible things to make the healthcare system more rational, and it's very difficult to make rational.

CHAIRMAN PELLEGRINO:  Thank you very much, Carl.  I'm sorry I wasn't at your dinner last night because it turns out that one of the Council members has had administrative experience.  I've run three large health sciences centers.  But I did not wish to enter the conversation from that point of view...  Next?  Rebecca?

PROF. DRESSER:  A couple of suggestions.  I think it would be important, probably in an early part of our report, to do a little bit of a survey of different philosophical foundations one could establish for access and briefly point out the strengths and weaknesses of each and probably acknowledge that none of them is a slam dunk, but if we look at all of them as a whole, there is substantial evidence or substantial argument to say there is a reasonable philosophical argument for moving forward with this from many different perspectives. 

And then I think you mentioned Dan Callahan's work in the White Paper.  I think a tough question for us is whether we want to talk about limits, whether one of the trade-offs for universal access is the acknowledgment that we can't give everyone everything and every new thing and every expensive thing that's coming down the pike. 

Now, you know, this gets us into some sort of rationing questions, and those are very difficult and controversial.  I mean, the strength of our system is that a small number of people can get amazing cutting-edge care.  And then there are other people who get very substandard care.  If we are going to try to address the problems of people getting the substandard care, does this mean that we have to compromise on the cutting edge?  Do we want to try to have it both ways?  Is that really possible and realistic? 

It's, again, a hard question, but it seems to me important for a bioethics report to at least acknowledge that as a possible issue.  And, really, deep down in there are questions about how we think about mortality in this country and what kinds of life-extending measures do we think are appropriate and beneficial and ought to be available and what kind do we think are perhaps less fundamental or mandatory.  Those are certainly ethical questions that we could get into and could be part of this, but it could be difficult.

CHAIRMAN PELLEGRINO:  Thank you, Rebecca.

DR. GAZZANIGA:  Again, I guess we're just mentioning things that we might like to see covered and examined on this topic.  And over the course of the Council various ideas have popped up, and just to mention a couple of them, I guess one question that's always at the back of my mind is what is it medicine actually does?          So the context of that is you can explain 80 percent of the variance of longevity by a clean water supply.  And so you go into a country, you clean up the water supply, and, boom, longevity jumps a huge amount.  So to some extent medicine's hugely expensive deal is dealing with a small part of the variance of our longevity. 

And then a part of that is how much of that should be—when you actually look at going to the doctor and so much, how much of it might be called—I've heard the term "boutique medicine."  In other words, it's not really serious disease medicine.  It's sniffles and colds and that kind of thing, flu, and all the rest of it.  

And so what would seem to be helpful for me to discuss this is to actually know where we are.  Where is the disease?  Where is medicine really making the difference in all of our lives?  And to separate that out from boutique, from other issues that are explaining the variance of longevity to me would just be clarifying as we approach and begin to approach how we might deal with this as a culture.

CHAIRMAN PELLEGRINO:  Thank you.  Peter?

PROF. LAWLER:  So Mike reminded me, as if I needed it, how little I really know about any of this except to say when Carl said that every time we try to make institutions rational we really mess them up more.  This is a sound principle of political science.  So that causes me to think about the advantages of our present chaotic, no doubt excessively commodified and perversely regulated system, which would be its propensity to generate unprecedented technological innovation on which the whole rest of the world is parasitic, in effect. 

So in thinking about technology we have to think about these reforms, especially if they involve more government centralization, how would they affect technological progress.  And this is a real issue.  And then thinking about this, too, you have to think about the issue—our speaker dismissed, I think maybe too quickly yesterday, the issue of federalism. 

Given our inability to make things rational in some comprehensive way, don't we cut our losses by having a variety of experiments going on in different states with minimalist standards they cannot go below.  So I'm not against my top three I mentioned last time.  On the other hand, a centralization will cost a real price. 

You know, number one, I may not—every time I hear Dr. Callahan speak, I'm semi-persuaded.  But, you know, we're a modern technological, keep-them-alive, self-preservation-is-the-bottom-line country.  We're Libertarians, except when it comes to health and safety, and then we're paranoid and Puritanical and all of this stuff. 

And so it's unclear that we can change our country on these fundamental issues.  We can call attention to, as we've done in so many reports—call attention to the downside of our individualism.  But when it comes to rationing, if rationing is required, I'm not so thrilled about the government in Washington doing the rationing or setting these standards, making these tough calls. 

And, number two, it could be that technology and biotechnology is going to cause all kinds of creepy things that might become compulsory like prenatal screening and all the implications of that and so forth. 

So I want a country where people can choose to opt out of certain things that they may not want to do for whatever reason of conscience.  So when I hear the—political science in me, when I hear about rationalization, centralization, rights, Rawlsian rights, I run, actually, while at the same time agreeing on these issues of access and equity and the problem of the risk factors and even the problem of personal responsibility.  I think these are real problems, but the political science in me says there's got to be one country in the world that doesn't go single payer, and it's got to be us.

CHAIRMAN PELLEGRINO:  Paul?

DR. McHUGH:  Well, I want to reiterate what appeals to me about this move, and that is to somehow learn more about what could be done to preserve what we do in medicine today with a new system that makes more of it available to the American people.

I'm very aware of the fact that doctors and all kinds of other administrators don't get along very well.  And they don't get along not simply because of the restrictions or other kinds of things that people want to put in, but they don't get along because they don't think at all in the same realm.  They're an entirely different culture.  And, by the way, I hope—the only thing I ask for is if we go on on this that we don't have Dan Callahan come again because I've spent enough time fussing with Dan not to want to do it again.

In fact, it's a nice example of what the problem is between doctors who are involved with individual patients and individual families and wanting to work and somebody who can sit by the side of the Hudson and think about what things would be better.  I don't want to hear him again.

CHAIRMAN PELLEGRINO:  I will take your message to Dan.

DR. McHUGH:  Yes, right, but I'm afraid Dan knows this.  I admire him in many ways, but I don't want to hear that message again.  I've been hearing it for a long time.

But what I need to learn and what yesterday was a beginning of is just a variety of people coming in and telling us what kinds of things really go on at the level of possibilities in economics and things of that sort that would permit me to be more informed about these matters.  In this way, it would be rather like we did with all our other issues.

The great thing about this program, this Council, is that we brought in world-class experts giving us their opinions, informing us, getting us to be better informed about the issues, and then we could discuss them, even disagree about what we thought the implications were.  But we did it from a much more informed base and less from the position that I'm in now of seeing this kind of culture war going on between administrators and doctors.

If that could happen, I could even imagine someone coming in and saying, "The system we've got now, with all the things you complain about, let me just tell you, if it were tweaked this way or that way, it would work perfectly better."  I might be willing to at least listen to that.  But without those kinds of opportunities, I just find myself railing in the dark, and I'd like to be able to enhance at least the ethical stance with which I propose to my patients, to my administrators, to my hospital administrators, in particular, the kinds of things that I would like to see happen.

CHAIRMAN PELLEGRINO:  Thank you, Paul.  Carl?

PROF. SCHNEIDER:  Sorry.  I have what is I hope more of a question.  Whom is this to be written for?  Who is supposed to be reading this?  At what level of sophistication are we supposed to be pitching all of this?  Would we expect that it would be short enough that ordinary citizens might be willing to take a look at it, or are we writing at the much more exalted level that in some ways is a lot easier?

CHAIRMAN PELLEGRINO:  To what level would you like to see it go?

PROF. SCHNEIDER:  I think we've served all kinds of elites very well, and I think that on this particular kind of question trying to write more demotically would be a good idea.

CHAIRMAN PELLEGRINO:  I certainly think that one of our tasks is the education of the public in the issues, and I think it should be, at least in my point of view, directed to the general public.  What are the issues? How do we see them? And if we have recommendations, make them.  If not, at least lay out the issues, which I think all of you have been discussing...

I think one thing that should be in it is a point the Rebecca made, starting from... the question that has not been discussed, namely, do we have some kind of obligation as a nation and what is it, and where does it come from, and are we [agreed] on that and so on and then [we can] go on to some of the more particular questions you're talking about. 

But I certainly agree with you, Paul, that it's got to depend on fact presentations.  I would say that poor facts make for poor ethics.  And so I think you need certainly to have that.  Comments?  Peter?

PROF. LAWLER:  Well, I think Carl is right.  We have two reports that are models, the caregiving one—I can't remember the exact name of it—and Beyond Therapy, which I think were written for broad audiences, compared to the more technical White Papers and the stuff on the embryos and all that.  So those papers may have—those books, really, may have failed to turn America around, but I think they are written in a very accessible way, and it should be our model again on this.

And in thinking about the philosophical foundation, I think we are going to have to follow the pluralistic line on this and say there are minimal things on which his variety of approaches would agree, including old-fashioned Lockean liberalism, to tell you the truth.

CHAIRMAN PELLEGRINO:  But at least those—excuse me, Peter.  At least those points of view should be expressed and laid out.

PROF. LAWLER:  No, no, it's fine to express them, but we can't really take a deep philosophical stand.

CHAIRMAN PELLEGRINO:  Oh, I doubt that we would agree.  Yes, you're right.  Further comments?  Bill, you haven't asked a question.  You generally do at this point, usually.

DR. HURLBUT:  I feel the compelling weight of this subject, but I also worry that if we take this up we really have to do it adequately—

CHAIRMAN PELLEGRINO:  Absolutely.

DR. HURLBUT:  —and be very, very, very careful not to play into one side or another of a political debate.  Here's a suggestion:  If we do it, how about agreeing that we will not release it until after the election?  How's that for starters?  And that we will hear a full spectrum of opinions on this. 

I just—I mean, intuitively I feel like this is such a huge subject, and we meet, what, four or five times a year.  Do we really have the adequate time and resources and personal energy to take this subject up and do justice to it?  That would be my worry, not that there's not a serious matter here. 

I personally would prefer to take on this as an ancillary—if we're going to take this subject up, take it up as an ancillary dimension and a very central, important one but as a—maybe "ancillary" and "central" are contradictory—as a theme wrapped inextricably from the issue of the role of the physician.            

That would seem to make a more balanced sense to me because down at the bottom of this issue are questions like the role of medicine in relationship to personal responsibility and the role of a country as a nation versus a society and how the society relates to the individual.  So I'm not speaking in a very unified coherence, but I'm just saying what some of my concerns are here.  Well, that's enough.

CHAIRMAN PELLEGRINO:  Thanks, Bill.  I think your points are well taken.  It is an enormous, complicated topic.  And one of our tasks seems to be to discern somehow within that large complexity what it is we can contribute. [W]e can only do that if we start looking at it and trying to put some of the issues into priority relationships... 

And I think there are very few groups that have been sitting and thinking about this perhaps as long as [this group].  I certainly agree with all of your reservations, but I think we could move ahead and at least give it a try, and the way we do that is by beginning to take a look at it. 

Last comment, Rebecca, and then we'll move to our public part of the meeting.

DR. DRESSER:  On the step where we try to learn more about practical ideas, I think given our time limits, we are going to have to ration the speakers on that for that step.  I wonder if it would be better to invite speakers who could review different ideas on how reform should be approached as opposed to true believers who think they have the right answer.  This might be more efficient and more suitable for what we're interested in.

CHAIRMAN PELLEGRINO:  I think that's a very good suggestion.  I want to invite all the Council members, given the complexity of the issue and your own involvement and positions, to make suggestions to Dan [Davis] and to me about whom you believe you would like to hear.  That would be most helpful to us.  We haven't done that in the past as much as we should have, it seems to me.  So I would invite you please to do so.