THURSDAY, MARCH 3, 2005

Session 2: Aging and Care-Giving: Long-Term Care and New Patterns of Decline

Joanne Lynn, M.D., Director, The Washington Home Center for Palliative Care Studies

CHAIRMAN KASS:  Could we get started, please?

Session two of Aging andCaregiving: Long-term Care and New Patterns of Decline.  And in this session we go back explicitly to the issues of long-term care that we have been considering for some time.  And we're very, very fortunate to have with us Dr. Joanne Lynn, who for more than 25 years has been among the nation's most vigorous physicians, researchers and advocates for proper care for the elderly and dying.

Joanne was actually an Assistant Director for Medical Studies in a previous Presidential Commission on the study of ethical problems in medicine; was for a dozen years the Medical Director of hospice of Washington; has been working as a clinician in the care of elderly and dying patients; and is now the Director of the Washington Home Center for Palliative and Care Studies.  She is also a senior researcher of the RAND Corporation at the Center to Improve Care for the Dying, and the co-author of the RAND Report, which you have in your briefing book.

Joanne gave a presentation to the staff, oh it's several months ago I guess, which was really quite eye opening.  And for that reason, among many others, we were very eager to get her to come and make a presentation here. And she's, I think, going to be the first physician ever to present to this body who is going to actually talk to us without slides.

So welcome to you, Joanne, and we look forward to your talk.

DR. LYNN: Thank you.

It's a pleasure to be among you.  I've certainly worked more on the staff end of these sorts of endeavors than at the table.  So I really thought that this would be an opportunity for you to try on some ideas.

I'm very pleased to be in the company of three distinguished thinkers and leaders with well-honed ideas and bodies of work that you will spend the rest of your day with.

I must tell you that at least with regard to the things that I'll be guiding you through, I am something of a junior scholar, having put these things together pretty much in the last decade.  These are ideas that have not had the merit of longstanding in the society or a lot of data behind them.  They do have the merit of being consistent with all the data, and I think better ideas than we have mostly been working with.  But I would expect that one of the things that I'll end up with here is charging you all to carry them forward and keep working on developing them.

One of my themes is that we need better ways to think about the end-of-life and better categories, better language.  And to that extent, I've given you just a two-page outline and you have the RAND White Paper.  Those of you who want to get into any of these ideas in further detail could use the bookSick To Death And Not Going To Take It Anymore! where these ideas are developed a little further.  But to a large extent there isn't a lot out there beyond this, so I'm looking to you to help to do that.

I'm going to walk you through some facts and ideas and then try to save lots of time for discussion of what this Council's role could be in shaping how the United States faces the challenge of large numbers of us coming to the end-of-life and aging at the same time, and having the opportunity to live to old age.  That's the first theme.

Do you all have the two page handout?  Okay. 

So the first thing that I wanted to take up was just the obvious demographic shift, but I think that there are some facts about it that we mostly dodged and we don't really quite take account of.  One is that almost everybody who makes it to 65, makes it to 80 or 85.  And that now about 4 out of 5 of us make it to 65.  This wasn't true even when Medicare passed.  We had lost so many people from the depression and the wars and so forth that even though the life expectancy wasn't a whole lot less, there were just many fewer people who made it into old age.  Now almost all of us around the table not only expect to make it into old age, we will feel quite thwarted and unfairly treated if we don't do that.  But it means a very different way of coming to the end-of-life. 

And if you have a glance at the table on page 2 of the White Paper you'll see the kind of extraordinary shifts that this means.  At the turn of the last century, the average woman who made it through infancy died in a complication of childbirth or at least in her middle years.  The average man died in the complication of his employment.  And we've forgotten just how many people died at work.

The people who escaped those, there were only two major chronic illnesses:  tuberculosis and mental illness.  We mostly pushed those folks out of the heart of the community into some other setting.

So the community was pretty much made up of able bodied people. Dying was quick from the onset to death, was ordinarily very rapid.  If you read Osler's textbook from the turn of the last century, you'll see the chilling statement that an adult who presents with full blown diabetes will ordinarily be dead within a month.  Think of diabetes as an acute illness.  You know, it's just so far beyond us now.

But it does mean that we now mostly get to die with very serious chronic illness. And it's only a very small number of patterns.  We basically either have cancer, we have heart or lung disease, a few other organ system failures although numerically they're much smaller, or we have various combinations of frailty including dementia.

Half of the people who make it to 85 will die with serious cognitive failure as part of their final course.  Nineteen out of 20 people who make it to 85 will have serious mobility problems as part of their final course.

The degree to which we are facing large numbers of people with serious disability, we really haven't really quite come to terms with.  The average woman now will have three years of self-care disability. The average man about two. Men don't live as long and they have somewhat more heart disease.  Women live a little longer and have more arthritis, so we end up with a little more disability.

But think about that.  That is as long as you spend in preschool.  Can you think of any character on television in this phase of life?  Any character who has been on TV two weeks in a row?  There are two or three counterexamples.  They almost all have cancer.  There's essentially nobody with frailty, nobody with stroke, nobody living with this part of one's life.  It's not been part of our public life, it's been closeted away, we mostly haven't talked about it in part because we just don't even have the stories to tell.  We've lived with this such a short time that we don't even know how to raise the issues.

We will have much more disability and we will have much more poverty, even without any changes in Social Security such as now are being contemplated.  The fact that woman will live so long with deficient pensions guarantees that we will have the onset of poverty before illness in old age in a way that we have not seen since the depression.  At the present time most women become poor at the time they're in long-term care.  I say women because it almost doesn't matter for men.  In our society men marry younger women.  The woman takes care of them during their illness.  A woman faces an average of seven years of widowhood at an income of just slightly more than half of the shared income the couple would have had.

As we have more and more people with short marriages and more and more men who are unemployed for long periods, we actually have a crisis of pension income. And, again, these are the kinds of things that we just haven't thought about as part of end-of-life care.  What are we going to do with large numbers of our mothers having no way to pay the rent?  And in large part because of the wage differentials throughout their life span and because they're the ones who provide the hands-on care.

Women now provide about a year longer hands-on care to adults than they do to children. It's already a dominant part of our lives, not a minority part of our lives, and expected to become much more substantial.  Men provide care almost entirely to spouses. There're very few men taking care of their mothers, their cousins, their sisters, their brothers.  Women, on the other hand, take care of all those other family relations, not just their spouse.

So family caregiving tends to be an economic reality for women much more than men, which was fine in the Ozzie and Harriet world in which everybody was in a couple and they all stayed together.  In a world in which there's mix and match marriages and in which men are not so reliably employed, it turns out to be disastrous.  And disastrous especially to communities of color or communities that have traditionally been impoverished.  Because in those arenas the opportunity for spousal attention is really diminished.

So I know this sounds very different than the conversation about physician assisted suicide and sort of rational choices in medical care.  But it's the kind of thing it seems that we have to start uncovering and realizing what we're up against.  Because all of us who are going to be 80 in 20 years are today 60.  You know, it's not an unknown group of people. And we only have a relatively short period of time in which to recreate a society in which you could count on growing old and living comfortably.  And right now with no changes, you cannot count on that. Most people will become impoverished.  Many will get inadequate medical care.  You will not be able to count on being comfortable or comforted.  And yet it's within our control.  I mean, this is a predictable calamity we could readily rally to take steps.

One of the things that we're really deficient in is stories.  I had a wonderful elderly lady who I was making rounds on at Christmas a few years ago.  And she was in the hospital.  And she was 86. And she said, "You know, Dr. Lynn, I've always turned to the Bible in times like this, and the Bible has always shown me a story of how to get through a tough time in my life.  But no one in the Bible died like this."

And I was in a hurry, and you'll forgive me, but I was not really thinking my theology through and I said, "How about Job?"  And she looked at me in that wonderful way 86 year olds have of looking at whippersnappers and said, "Job lived."  And she's right.  There are no stories in the Bible of long-term disability, of people living with a fatal illness for 5 and 10 years knowing that it will take their life, not knowing exactly when, and expecting to get worse and dependent upon the community because you couldn't live that way in a time in which you had to make it out to the outhouse, you had to build your fire.  You know, life was harder and you didn't have medical care to get you through pneumonias and all those sorts of things.

So we've created our trap, but we don't have any stories of what it is to live well in that circumstance.  What is it to be a good husband, a good father, a good mother, a good child in the circumstances of very long-term disability?

We have this sense that we can talk about end-of-life care as if those who are dying are separate from the rest of us as, you know, men from women; there are almost no ambiguous cases.  Where if a doctor was just honest, you could tell who was dying.  That has to be one of the most pernicious myths going because it has this sense that we could just do just the right thing for the hospice population and we can walk out on long-term care, we can walk out on serious long-term disability and all those sorts of things and just do the right thing for the dying person.

Well, maybe that would turn out to be the case.  But we did some work on prognostication and how well we can prognosticate.  And, again, this is one of the toughest truths to take to heart.  The average person who dies today of heart failure, yesterday had a 50/50 chance to live six months.  Heart failure is our biggest single diagnoses in Medicare.  The average person who dies today of heart failure, yesterday had a 50/50 chance to live six months.  So yesterday they were just barely qualified in a statistical sense for hospice care.

How could that be?  I mean, people say that can't be true.  Well, it turns out that the usual way of dying now is to be living on thin ice and to have a rather unpredictable event spell the end.  So the person is living with bad heart failure.  They can't climb steps, they can't get the groceries in, they can't eat any salt, they're on all kinds of medications but they're looking kind of stable.  They aren't looking any worse on Thursday than they were on Wednesday.  They're not a dynamo; they're not 20 years old, but they're getting along.  And then they get a pneumonia, they get an arrhythmia, they go off their diet, they run out of their pills or whatever, some calamity happens.  And the course to being dead is very fast.  But the background was that of serious chronic illness. 

So you could say for 100 people with bad heart failure, I can draw you a curve of what the survival span is going to look like.  I can be very accurate on that curve.  What I can't tell you is whether Mrs. Jones is going to die early or late.  And the idea of unpredictable dying in the context of serious chronic illness is now our dominate way to live out the end-of-life, whereas our dominate myth is sweet young thing — now remember I'm a geriatrician so young is anything under 80 — gets terrible disease, almost always cancer, does something stupid, rails at fate, tears up her family, brings it together, talks with God, dies in her bed, lily on breast, one hour and 45 minutes.  You know, it's convenient for the movies and it's the only story we know how to tell.  It's Love Story, it's Steel Magnolias, it's Tuesdays with Morrie.  It's every story we tell with just a couple of exceptions.  It is a minority way to die.  Very few people have just 4 to 6 weeks of a real dwindling course at the end and before that they were really doing okay.

Now it's much more common to live a long time.  In many ways the major success of modern medicine is the opportunity to live a long time with a disease that used to be fatal.  I mean, I remember when people — when I first was in training, people would come into the hospital all the time with a heart attack and be dead.  I mean, they would be dead that day.  Now we have almost nobody who makes it to the hospital who dies in front of us.  And we have such good revascularization, such good ways of restimulating the heart that they almost all make it out of the hospital that time and have the opportunity to live with serious heart disease on downstream, which is a whole lot better thing to do.  I mean, I'm not saying we should all go back on this.  It just means we need a different kind of thing for the downstream illness and we haven't thought that through.  We thought we were doing just such hotshot stuff to save the life up front that we didn't think we had any obligation to life downstream.  And we do, that's still us.  You know, it's still us in the future of these people with serious long-term illness that will eventually be fatal but will live with a long time.

So it's a very different image of what it is to come to the end-of-life. Most of us will have a very serious disability for a substantial period of time.  We will have a label of an illness that we know to be fatal including just being very, very old.  I mean at some point just frailty catches up with you without a terribly important specific diagnosis.  And in a sense we'll know what's coming but we won't know exactly when. And what we need are social arrangements and health care arrangements that makes sense of that piece of our lives and help us to live meaningfully and comfortably at a price the community can sustain, a way that we can dish up the right kind of services over and over again, be reliable about it, make sure that the community can sustain that and have it be the kind of thing that patients, that those of us who are going to get old, can rely on.

That's a very different image of what end-of-life care is than rescuing people from bad pain or just providing hospice care. It means we have to take this phase of our life as a population and figure out things like housing and transportation, and pain  management and family support that we ordinarily sort of marginalize out of the health care system.

So my point is that living well with fatal illness is different from what we've called dying.  I want to just stress that one of the important calamities awaiting us is family caregiving.  I've mentioned some of the kinds of dysfunctions that face family caregivers.  I bet if we went around the table here, how many people on the Council have more than three daughters or daughters-in-law?  How many of you have more than three daughters or daughters-in-law?  No one?  No.  One. Very good.  Oh, two.  Very good.  Okay.  So two of you have a better than 50/50 chance of never needing institutional long-term care. 

The rest of us were imprudent enough not to have large families.  We also were imprudent enough to shut down much of immigration of the kinds of people who would do this work.  In Washington, D.C. here the average nursing home aide or home health aide is so poorly paid that they are on food stamps.  It is not plausible that in the future era that can be the economics of direct caregiving.  It is very hard work.  Almost nobody in the room would do it at a good wage, much less at a wage that doesn't afford you the opportunity to rent an apartment in Washington.  So we face an enormous crisis in direct caregiving.

Who is going to spoon feed us?  We didn't raise enough daughters and we didn't train our sons.

So family caregivers have very difficult work. Every other country in the world has a family caregiver policy. Most provide income.  Virtually all provide inflation index pensions.  Virtually all provide health insurance. We provide none of that.  We provide no respite care, no training.  And as if to make it even harder, we provide no honor so that we do not think of the woman who took off work to take care of a mother as a hero.  And we don't have ordinary patterns in which we reach out to make that person still part of the community and someone of value.  We instead just ignore them.  It is as if we set out to see how hard we could make family caregiving, and yet half of all the direct care in the country is given for free by families.

So we are going to have to really rethink what we need to do to support family caregiving.

So then there are a couple of other facts there, because one that I wanted to — because the costs came up before.  Just have a look at the graph in figure 1 which is on page 3 of the White Paper.

Almost everything we graph in health care, health care costs, uses age as the X axis and Y as costs or hospitalization or something of the sort.  A very interesting thing happens if instead you try graphing it from zero to 100 percent of a life span.  So a life span of 50 years goes across the whole X axis and so does a life span of 100 years.

It turns out that almost all the costs of health care in your life span are in the last tenth, no matter how long you live. Now obviously there's some infants and so forth where this starts not behaving well.  But for almost all of us if you die at 50 of breast cancer, your biggest expenses will almost all be in your last five years.  If you die at 100 of frailty, it will be in your last ten years.

We have concentrated the costs of care and this period of disability so extensively, and yet we don't see it in the ordinary ways we graph things and look at the facts.

I think once we started seeing this kind of relationship, we'd say oh but wait a minute what are we buying here.  And we'd say we aren't buying what we want.  We aren't buying confidence.  We aren't buying reliability. We aren't buying symptom management.  We aren't buying good things for our families. We're buying desperate efforts to correct a physiology in the hopes that it will give us a little longer life.  And while that is a good thing to do in general, it may well be a disproportionate cost so that many of my older patients will turn to me and say why is it that I can get any surgery that I want and I can't get Meals on Wheels on a weekend?  Why is it that I can get any intensive care unit treatment that I want or now shortly any drug that I want as soon as Medicare Part D comes on board, but I can't get someone to help me with my dentures?

You know, if we looked at the priorities of 88 year old women living alone, we would have built a very different care system.  We built a care system around the hopes and fears of 50-year-old men in suits.  We did not build a care system around the hopes and fears of 88-year-old ladies desperate with three or four illness and scared about their incomes.  And we now have lots and lots of us who are going to be those old ladies, so we need to, I think, rethink where the priorities are in the care system.

So, those are sort of the facts that I wanted to make sure were on the table.  But I'll break in here and encourage you to raise any questions of clarification, and then we'll go on to try to build the care system that we want to have.

Anyone?

CHAIRMAN KASS:  Janet?

DR. ROWLEY:  You may be going to deal with this later on, but what impact is increasing obesity in children and young people on young/ middle aged adults, and the dramatic increase in diabetes; what impact is that going to have on longevity, life expectancy and, of course, again some of these end-of-life issues? But they may happen much earlier than 65.  Now you're sort of saying if you make it to 65, you're going to make it to 85.  But is this going to change demographics?

DR. LYNN: Yes.  And it's a very complicated iteration that we haven't really sorted out terribly well.

On the whole I think the evidence is that the increasing obesity will slightly diminish our life span and greatly increase our disability.  That on the whole we will be pretty good at patching up the damaged heart and letting the person live almost as long as they would have lived as a lean and fit person, but they will have much more arthritis and they will have much more muscular conditions, and they will have much more renal failure.  And so I think that the disability rate will be expected to go up with a modest diminution of survival time and a bigger increase in the period of time with disability.

The degree to which that actually has an impact in the next 20 years is relatively modest, because most of us have sort of cast our lot by — you know, people who are going to be 80 in 2025 are already old enough that their life span experience with obesity is not going to have much impact.  What the impact will be in 2060 is what we need to be worried about right now. But in the short run it isn't going to make much difference.

DR. MCHUGH:  Yes.  I was fascinated by what you were saying, but I just have one specific question.  You have there in figure 1 an interesting graph that talks about America's current health care expenditures over a life span. But you mentioned, of course, that what's happened over time is that our life spans have extended.  Would that graph have been any different if it were a 100 years ago?  Wouldn't we then also be expending most of our resources on the dying patient?

DR. LYNN: Well, actually, it appears not to be.  And I would love to have the opportunity to really delve into the data and see if I could build this up.  But if you think about how people came to the end of their lives in 1900 and how they lived their lives, actually health care was a very small piece of your total costs.

DR. MCHUGH:  I mean just relative to overall health care services.

DR. LYNN: I understand.  But I'm saying on the whole people got sick and died all in one sentence.  You know, they were run over by the horse, maybe lived three days.  They got appendicitis and died that week. They had diabetes and died in a month.  There was very little long-term care.  There was very little long-term disability.  As I say, except for tuberculosis and mental illness we did not have very much long-term disability in the community.  And I mean those weren't in the community, those were put off in other institutions.

At the turn of the century in New York City the average woman died as a complication of child birth. And think how rapid that was.  The average man of a complication of his employment.

So I remember growing up in West Virginia where there were lots of my classmates with parents who died in the mines or fathers who died in the mines or fathers who died of black lung disease.  And you know dying at 45 with black lung disease was a fairly rapid dying.  We don't have very many of those anymore.

So one would guess that the curve was substantially flatter, that there were more of a proportion of your lifetime expenses were scattered throughout as you had an injury or, you know, a complicated childbirth or something of this sort. And that the end of the life didn't add a lot to the costs because there just wasn't much opportunity to throw much at you.

DR. MCHUGH:  I see.  So this is an advantage? This is a positive thing because we are able to do more at this stage.

DR. LYNN: Yes, it's more what we are buying with it.  I mean, I think fundamentally there are four health care systems that we need to think about:  One is reproduction and childbirth. One is the long term in which most of us are reasonably healthy and what we need then is prevention and emergency services.  One is this small number of people with long-term disability throughout a normal life span or at least a prolonged life span who need lots and lots of services in order to be enabled to live well, but who are going to need that service all the time.  And then there's all of the rest of us who get old and frail and sick and need extensive services to live reasonably well for a relatively short period of time, that is on the order of 3 to 6 years, that during which we are getting sicker with a fatal illness. 

And the reason I say the four different kinds of care systems is because there are very different priorities in them.  You know, it is really different to be at 92 and have had a stroke and to be frail to have your muscles failing and to feel as if your life has come to completion.  And maybe there are important spiritual issues to do or family issues to do, but living a few more months is a nice thing, but it's not a terribly high priority like it is for the 45-year-old guy who has just found he has colon cancer.  Well, yes, he has a fatal illness, but his living 3 to 6 more months would be really important for a chance to make things right with his family.

So the kinds of priorities and where we want to put our emphasis I think is different in these different pieces of one's life.  As you get to serious chronic long-term illness at the end of life, continuity becomes terribly important and yet we build a care system with "doc in the boxes," you know, where continuity is just not valued.  I think that we should probably come to a care system in which a doctor really couldn't provide care for a patient with emphysema unless they're going to be with them through to the end.  I mean, that team at least.  Not necessarily that individual doctor. But just like we do with obstetrics, you'd have a small team that would stay with the person throughout.

The idea that you can take good care of a patient with emphysema by meeting them in the emergency room for the first time is just silly. Of course it's different to know the person over time to know how they look, to know what their labs have been, to know how their family reacts and what they've got at home. Of course it's different and better.  So why do we build "doc in the box" care systems in which there are silos in which we shuttle patients from one to the other and we put no value on continuity?  So I think the priorities are a little different.

CHAIRMAN KASS:  Let's get a couple of short questions, because Joanne I think would like to fill out the rest of the time. So these should be questions I think for information about the facts rather than —

DR. LYNN: That's okay.  People have to make it their own, so I'll take it.

CHAIRMAN KASS:  Michael?

PROF. SANDEL:  This is just about a fact that was very striking that you gave early on. You said that women on average spend a year more caring for the elderly than for children?

DR. LYNN: Caring for adults, yes.

PROF. SANDEL:  For adults.

DR. LYNN: Yes.

PROF. SANDEL:  What is the actual finding?

DR. LYNN: It's about 18 years now that the average woman spends taking care of children and it's about 19 years that the average American woman spends taking care of a dependent adult.  That dependent adult, obviously, can be a grown-up child or a spouse who got injured at 32.  But numerically the large numbers are people taking care of old people.  You know, of people who have their fatal illness and are going to die.  So large numbers.  And family caregiving has now become — you know, Rosalynn Carter was fond of saying there are only three kinds of people, people who are currently caregivers, people who have been caregivers, and people who will be caregivers.  It's going to be just a dominate part of all of our lives and yet we don't see ourselves in that role.

People take care of family members for years and years and you say well aren't there some political issues around family caregiving.  And they said do I know anybody who is a family caregiver.  Well, you say well wait a minute your mother has been living with you for the last 7 or 8 years.  You've been getting the groceries in.  Well, unless they're providing kind of diapering, they don't think of it as caregiving.  They think of it as just what families do for each other. And yet the fact that somebody had to leave work and has cut into their retirement income and has greatly altered their social life doesn't  register as being part of a group of people who are spending a lot of time in family caregiving.

Anyway, should I go on.  Gil, did you want to—

PROF. MEILAENDER:  This was a follow-up on Paul McHugh's question, though I'm not sure whether I'm going in the same direction Paul was. But there's a certain tendency to kind of pit the medical system we've created against what we need to deal with the kind of problems you're talking about.

I took Paul's question to be pointing to the fact, though, that we wouldn't have these problems if we hadn't accomplished something good.

DR. LYNN: Oh, yes.  Sure.

PROF. MEILAENDER:  In other words, as opposed to suggesting that we've created something bad, we've created something that's very good in a lot of ways. Then a new set of problems ensues and you have to figure out to do about them.

DR. LYNN: Sure.  I would heartily endorse that framing.

PROF. MEILAENDER:  Okay. 

DR. LYNN: I've already had two fatal illnesses in an earlier era.  I'm delighted to be alive.

No, I think that this is the kind of problem we should celebrate, but it is a problem.  It's a whole lot better to have automobiles in the city than to have everybody getting around by horseback.  Can you imagine the sanitation problem we'd have moving people around by horseback?  But it still is a different set of problems and we need to, it seems, to confront the challenges that we've created.  Maybe it's better to call them challenges than problems.

I think it's a very good thing that we mostly get to live long lives.  I mean, mostly get to live lives that are valuable and meaningful and comfortable. I think that's a major triumph of public health and medicine and our lifestyles.  But it does carry some challenges that we need to confront.

Let me go on then to there are some better arrangements.  Many of you will be familiar with hospice, PACE, the programs of all inclusive care of the elderly.  

In some managed care plans I think there are some extraordinary models being developed.  I'm especially fond of Kaiser in the west where there are areas where their penetration is so high that they can afford to serve the community rather than being worried about adverse selection of disproportionate pulling in very sick people.  And, you know, so you have to get to the point of managed care where you have a lot of people in the community in that in order to be able to provide optimal services.

The VA I think has really stepped out in front.  The Veterans Administration now has care in every hospital. They're the major trainer of doctors, nurses and social workers in care programs.  They've greatly moved from an institutional-based care to much home- and community-based care.  So they try to think through how a whole system would look for a group of veterans.

So we have some interesting models out there.  Why can't we get to really good care?  Well, the first thing is we have to have an image of what it is.  And you'll see in the White Paper a figure that sort of outlines these. But the important element here is not the specifics of the things I've listed, but the reliability; that the care system would get good enough that you didn't think you were on the roulette wheel and that your family might be nailed or you might be bankrupted or your doctor might not come through with good pain management but that you could count on good care.

Many of us are old enough to remember when obstetrics was something of a roulette, or worse and there was really quite a revolution of women saying we are simply not going to put up with being schnockered to deliver and meeting the baby sometime later and having no support for breast feeding and all those things.  We're going to take it back in our hands and it was the "our body ourselves" movement and so on.  And we really have changed how obstetrics care is provided.  But the change is not that women still have to run that gambit.  The change is that if you showed up and said not a word you know, and I think I'm pregnant, you'd get just about the right care.  I mean the extraordinary revolution in obstetrics is you no longer have to fight for what you want to have happen because obstetricians have said — and the whole obstetric delivery system has said here's what really makes sense in good obstetrics care.  And that's what we're basically going to offer. And the woman who shows up and wants something a little different, sure we'll make room for some differences, but fundamentally we're going to expect that people want decent pain management and good bonding with the baby and the significant other to be taken care of.  You know, there's a set of things that count.

Well, in end-of-life care what are the set of things that count and could we build a care system that would be reliable in making those available?  So the family caregivers were supported.  So you're never in terrible pain. So that the effects upon family finances would be accounted for.  You know, could we build a care system in which early in the course of illness a doctor or a nurse or whoever could sit down with a patient and say it's very unfortunate that you face serious heart disease or lung cancer, or whatever it is that is your particular burden, but at the very least your care system can be counted on to do the following things?  We've thought these through, we know they work.  You cannot be in a setting in our community that won't be good at managing pain.  You can't be in a setting where you couldn't get sedation at the end-of-life.  You won't be in a setting where your family won't be honored and taken care of.  Because we've thought this through and we've put together a care system that works.  That's what we need.  We need the revolution that makes it reliable so that people can stop worrying about the foulups and errors in the care system and live their life that's left.  And we're going to live years in this shadow of heart failure.  If what matters is that you get to write the great American novel or go fishing, you need to be enabled to go do those things; you know, figure out how to get the oxygen down to the river bank, and get medical care out of center stage.

It's not primarily about medical care. It's primarily about the life to live.  But that's a set of stories we don't know how to tell.  We know how to bring the story to life on ER, but we don't have sitcoms about people who are living with fatal illness.   I keep waiting for Golden Girls to come back.  I want Maude in a wheelchair from a stroke and now facing some other fatal illness, you know renal failure or something, cracking jokes about sex, being just as irreverent as ever, being quite a character and being realistic about the fact that she's going to die with this illness and that she's not going to be out of her wheelchair and she's going to get sicker, and that's okay.  It's still wonderful to be 88 years old and living this way and being among friends and having a life that would be valued.

We need to have that sense that you can drop your guard and live your life rather than being worried that the care system is going to end up hurting you.  How could we get to that?

Well, it seems at first blush as if it's just hopelessly complicated.  Everybody comes with their own family array and their values, and their different physiologies and their different panoply of illnesses.  How could you build a care system that would work?

Well, one of the most important ideas you'll see on page 8 of the White Paper is that first we have to think about the piece of time when you are very sick with a fatal illness as being worthy of a different kind of care system, and it would have characteristics like continuity, like being responsive to a number of human concerns. And then it turns out that there are roughly three major trajectories.  That if we could build a care system that would work for each of these three, we would leave very few people out.  That's a very powerful idea in thinking about how to organize care.

The first is the classic Love Story scenario where the person, you'll see the Y axis here is sort of doing well versus doing poorly and the X axis is time.

The person goes along really doing pretty well.  They may have a terrible diagnosis.  But they're still taking care of themselves, they're still in their apartment or their house, they're still seeing the grandchildren, they're still taking care of their ordinary life activities until finally the illness becomes overwhelming and they take to bed and do badly, and in a sense kind of die on time.  This is the classic course with colon cancer, lung cancer, certain kinds of AIDS goes this route.  Not very many other illnesses.  But where there's a piece of time where you really could see the person is now dying.  They're really fading now. There's less energy this week than they had less week. They're losing week. And this was the model behind hospice.  So you can see how you could put together good medical services, good supportive services and then good hospice care, integrate them better and you could serve this population pretty well. Unfortunately for planners, it's only about 20 percent of us who have a course anything like this. 

Slightly more of us have a course like the second one where you go along with substantial limitations and intermittent terrible exacerbations.  Heart failure, emphysema.  You go into the emergency room terribly sick and we're so good at rescuing you that the person after a couple of rounds of this thinks that this is just going to go on forever. They're waiting for cancer.  And the doctors don't ever quite get around to saying this illness will kill you just as surely as cancer, but your dying will be sudden.  You're dying will be within, at most, a few days of your fatal set of complications.

So we should always have a standby plan for what we're going to do when this illness becomes overwhelming.  Do you want to be on a ventilator?  Do you want to be in intensive care?  Do you want to be at home?  Do you want to have a trial of treatment with aggressive treatment and then if it seems as though we've really lost ground, to have those withdrawn?  Let's have the plans in place. So you want to limit the rate of exacerbations, improve the life between exacerbation and then always have a plan for the set of exacerbations that's going to take the life.

And so you can see how you could put that together also, but it's a different rhythm, a different set of services than the first one.

Already most of us face the third trajectory.  Already it's long-term progressive disability.  We can label it as heart failure, we can label it as stroke, we can label it as dementia, we can label it as frailty and old age.  But fundamentally, it's inability to take care of one's self on an everyday basis from a set of conditions that are progressive. It will get worse and worse over time, not necessarily on an every week basis but that in six months from now you're very likely to be in worse condition than you are today.

Here it's much more family caregiving, hands-on caregiving, endurance. Can you manage just to stay with the person, honor their existence, support their family for what turns out to be years and years?

To the extent that we are good at delaying onset or preventing cancer and heart disease, we will have more of us traversing this course.  This is the most challenging.  We don't know how to ascribe — really how to talk about this course yet, to acknowledge that it's fatal, to acknowledge that on the whole we don't have ways of turning around frailty and we aren't likely to.  What would we substitute?  There's not sort of an easy illness to substitute.  But nevertheless, you can see how the kinds of services would be different here.

There would be a lot of family caregiver support.  Very good nursing home care when you must use nursing homes.  Always having a plan for how to handle the final complications. You can see, though, how the rhythm of the services, the kind of people providing them are going to be somewhat different.

There are now cities in Sweden that are using these models in city planning for paradigmatic cases. They call them the three Esthers: Esther with colon cancer, Esther with heart failure and Esther with dementia.  And the idea is that if any Esther in my city can count on good care, then almost everybody can count on good care. It's a powerful idea.  It's like that of revolution in obstetrics where you say well if this is the kind of thing you face, let's have a set of services, know how to interdigitate them, know how to support them so that you can count on this level of care.

It's a very powerful idea it seems in organizing how we could think about good end-of-life care. And so that's sort of the core of the pitch here.  How we would get from here to there, I've given you a short list.  I think we need a political force in the family caregivers.  We need to aggressively change our language and stop talking about saving lives and stop talking about how devices and so forth are all, you know, these wondrous things because they save lives. But instead talking about how we're going to live well with the illness that will take our lives.

We need to tell stories.  We need to try them on, figure out what it is we're going to learn to value in family behavior, in our own behavior.  They're taking every last opportunity to live a little longer or being willing to cut short that kind of pursuit.

We need to try out substantial reforms in demonstration mode.  We have done almost nothing of this.  We have been so high bound that we just aren't willing to let people try out very dramatically different ways of organizing care.

We need to do quality improvement work in existing programs so that we learn how to make sure we can provide the things that matter. 

And then we need to make success and failure visible. We need to be monitoring this on a population basis.  You do not know today whether Washington's doing better than Baltimore, or for that matter whether Washington's doing better than they were five years ago because we don't think about this as an epidemiologic issue.  And I think that would be an easy thing.

So these are things I think that would be really strong as a national endeavor, and then we can turn to what I think the Council could do.  But first I know Dr. Rowley and maybe some others have some comments or questions.

DR. ROWLEY:  In your diagram that you have here on page 8 you told us that the top figure or top part of the figure included about 20 percent of individuals.  Could you give us some data for the middle and the bottom part?

DR. LYNN: Yes. These are very rough estimates.  But on the order of 20 percent for the top and maybe 25 percent for the middle and then the bottom one gets 40 or 45 percent.

There are only now about 6 percent of people — this is Medicare data on the rates, which is not far off because 83 percent of us now die on Medicare.  But there are only 6 percent of people who appear to due suddenly in Medicare. Probably half of them are in the VA, so their expense stream doesn't exist in Medicare.  So one of the things that people have to really come to understand is that it is now very uncommon to die without a substantial prior illness.  So we're basically sorting among major illnesses.

DR. ROWLEY:  Thank you.

CHAIRMAN KASS:  Gil Meilaender?

PROF. MEILAENDER: Could you just give me an example of the sort of thing you might have in mind when you refer to a substantial reform in demonstration mode?  What sort of thing might we try out that you say we're just not doing?

DR. LYNN: Well, I've got my favorite dozen.  We've been trying for the last five years here in Washington to put in place a program, it would be under a Medicaid waiver, a medically complex program.  And this would be once a person was at a certain stage of serious illness, and we've got them all outlined, and they had a provider of care that was a team provider who could answer the phone and access the patient's records, could get to the home within an hour day or night, could take care of the person in the hospital, the nursing home, home care, hospice, you know, so they're a continuity provider. Then Medicaid would pay the provider on the order of about $8,000 extra per year.  I mean it's a complicated formula, but it basically ends up that on top of fee for service billing.  But in return, obviously what they're doing is mobilizing excellent care to where the person lives, lots of family support, always being in touch with somebody who knows you and has your record.

And it turns out that by our estimates we would save in the first 100 patient years, that's first 100 people in the program for a year, we would save Medicaid three-quarters of a million dollars and Medicare three-quarters of a million dollars.  What's in the way of doing this?  And this is a win all the way around.  The patients get better care, everybody saves money.

There are so many forces that keep that from happening.  You know, it requires a whole different way of thinking about what is going to be quality care and how you're going to pay for it, and how you're going to regulate it, and who is going to be eligible to play the game.  It's not every doctor who can get into this.  It's going to have be people who are committed to a very different model of care.

And those are the kinds of things that have been very hard to get implemented.  You can't do it on a randomized basis.  Every demonstration that Medicare has put in place for the last probably ten years has required randomization at the patient level. You cannot do this kind of change and randomize patient-to-patient. You know, every patient in a particular environment has to be eligible for the program or you can't change how people think.

You know, instead of a person as soon as they run a fever call 911 and send them to the hospital.  Instead you have to be thinking, no, actually we mobilize the nurse practitioner out to see them where they are and see if they really have to come into the hospital or if we can take care of them well right where they are. But you can't do that if you're doing it differently for Mrs. Smith and Mrs. Jones in the same doctor's practice. 

So we have a thousand influences that make it hard to do these demonstrations.  We need a sort of an energy in this, a sort of willingness to let people try things out with protections for the patients.  I mean, I don't think that in anyway we want to put ourselves, afterall it's us in the future that are going to be the patients in these schemes.  But more to be willing to take bigger bites of what kinds of things would be possible.

The risk adjustments that we put in place in Medicare so that managed care plans could offer these things are so paltry as to be laughable. You can't put excellent care into this community on a managed care basis because everybody who's sick in the community would come to the managed care program and it would be belly-up after the first 100 people that signed up.  You have to have a risk adjustment that's much more robust.

We're talking about in a D.C. proposal, we're talking about targeting patients who cost $35,000 a year to Medicare and an equal amount to Medicaid, or even more in some cases.  So these are $70,000 a year lives, you know, just on an economic basis.  The risk adjustments now available in reimbursing managed care organizations don't get anywhere close to that level.  So we need to be willing to develop the fortitude to try some things out in bigger ways, in communities that are willing to try them out.  You know, it might be geographic communities, it might be communities of concern in other ways.  But those are the kinds of things I'm thinking of.

I think that we should also try some sort of radical shaking the world up kind of proposals.  Like the second time a person comes back to the same hospital with the same serious chronic illness and there's been no discussion of advanced planning, nothing is documented from the first hospitalization or the time between, then I think the hospital should take a major blow for their reimbursement on this second hospitalization as payment for their error the first time.  I mean, they blew it, you know, so they ought to pay for it.  I think it would take about a day before that became a priority, you know.  This is not hard to do.  It's just that we've been willing to tolerate widespread error.

How is it possible that the usual person coming to a hospital in this city today from a nursing home has no advanced care plan?  In Oregon now, it's about 80 or 90 percent.  Why can't we achieve the rates that are achieved in Oregon?  Because we're use to tolerating error.  And so we have to find ways, I think, to pull individual sort of examples like that out of the murk and make them poster children for change.

And then we also need to figure out how to change the capacity of the care system and the reimbursement kind of bit-by-bit, you know 20 small steps, to get to a way in which very good providers doing very good jobs can make a living without having induced major disruptions in the care system in the process of reform.  And that's going to take some creative work, but first it takes a will.  First it takes a drive of a body like this that would say we ought to get there.  We ought not to be the most developed country that's simply blowing money and blowing resources on irrelevant things and failing to provide the ones that count.  We ought to learn how to realign our priorities.

You know, this didn't come down off the mountain with Moses.  You know, this is a human creation from the last 50 years.  We can recreate it to match the population we now have.

So that's the kind of thing I have in mind.

CHAIRMAN KASS:  Rebecca Dresser?

PROF. DRESSER: I just want to push you to get to your last part because just for a background, and you may have heard, one of our struggles — we've had I think two major struggles with this report.  One is how to organize it and what to cover.  The other is what can we as a bioethics council add.  We're not a council of health policy makers or economists and we don't have that expertise. So what can we do?  And I guess just looking at this list I see related points, but I wonder if you could incorporate this point into your presentation.

What frustrates me is the lack of political and social appreciation for the seriousness of the problem. And I know as an advocate throughout your life I'm sure you've had that frustration a hundred times more.  So have you thought about a specifically ethical argument to make about why the current situation is disturbing, wrong, morally inappropriate and so forth that might help us to frame our report?

DR. LYNN: I certainly can try.  I mean, the experience of being on the staff of a similar group some years ago at least leads me to trying to figure out some of the things that you might do.  I've actually added a ninth one while thinking on this since I wrote this up, but let me just run down these a little bit.

I think that in direct answer to Rebecca's comment, I'm not sure that there are the kind of ethics issue that we thought constituted medical ethics 20 years ago.  I think it's much more questions of values, questions of what stories are we willing to tell, what myths are we willing to promulgate, what categories are we willing to use, what serves us best.  It's not as much the ethical dilemma, you know to stop or not stop a feeding tube or something of this sort.  It's much more what kind of people do we want to be.  And when we look kind of deeper than we usually look at what we value in our community and in our heritage, how does that speak to us in creating the social arrangements of the future?

And that actually brings us to the point of the one that I added on that isn't written on here yet, which is I think one of the most fundamental challenges, is whether we are largely facing these issues one-by-one or at most in tiny communities, in families or are these largely shared issues?  You know, no matter what we could say about your virtues and wealth during the middle of your life, when you come up against it at the end and you're facing mortality, is the commonality among us what speaks to us or is it sort of what you deserve?  Fundamentally are we willing to let old ladies die in ditches?  Are we willing to walk out on one another in serious illness and old age in a way that we haven't been in the last 60 or 70 years?

When we face enormous numbers of people who are quite dependent and impoverished, are we going to learn to have it be their own problem in the way that we commonly do for homeless men at 45 or are we going to instead say no, actually, this one's a community problem?  This one's one we've got to solve altogether.

And I think that's a real problem area in our society at the present time.  To what degree are we all one another's keepers and obliged to at least work out housing, food, decent care, skin care which turns out to be, contrary to Herb's claim last time, by far the most expensive part.

The ICU, yes, the ICU is more expensive on a per-day basis.  But survival is what's expensive at the end-of-life.  So you can't really sort of duck out on this by saying, oh well we'll cover ICU care but we won't cover long-term care.  I mean, it is the long-erm services that really amount to the biggest community commitment. And so we're going to have to at some point bite that bullet.

So to the extent that this Council could bring to bear observations from our literature, observations from the sources we turn to in theology, in grand myths, in the way we think about ourselves; what kind of nation do we want to be?  Do we want to be a nation in which if you lived the life in which you didn't save enough, you will face a grim old age or do we want to be the kind of society in which we say well, you know, there's going to be a limit to how grim that can be?  We really are going to see to it that people can be fed and clothed and housed and not in terrible pain and their families supported. We're going to share that burden, at least at that point.

So that I think is the kind of thing that you could speak to, not necessarily with a conclusion, but just what kind of sources can we draw from, what kinds of activities could we undertake to help guide us into a better future rather than a more thoughtless future that one that we kind of arrived at willy-nilly without having particularly thought it through.

So that gets back, I guess, to the first one:  Draw upon our heritage to find the metaphors and stories that would help grant meaning and language to the challenges of serious disability before death, of caregiver burden and personal growth.  You know, what kinds of things are we going to come to value in caregiving?

And I think the most complicated one is how we're going to come to understand and value lives afflicted with serious and progressive dementia.  In what way can we come to express a love and comradeship with people who can no longer, in many cases, even acknowledge us?  We've written a lot on this sort of thing.  But, you know, that's not in common parlance.  We don't know how to even talk about these things.  Go look at the news stories on Ronald Reagan and see just how little was ever said about what the lived experience is of coming to the end of life with dementia.

Give us more historical perspective on how we're changing.  I mean, I've given you one view. It's certainly not the only view, and it may not even be a correct view, but it's also something we don't spend much time on.  We don't think about who it is we are becoming and what kinds of histories we could call on.

I think we must give voice to the serious concerns for grinding poverty in old age.  We have mostly been spared that.  We have very little poverty in old age that the person is not impoverished at the time they enter old age or becomes impoverished because of illness.  And we really do have the likelihood of large numbers of women and virtually all women of color who have spent their lives in poverty who will be in poverty before becoming ill in old age within the next 15 or 20 years.  What will that mean to us as a community when we can't just say well Medicaid will pick it up in a nursing home?  Because the person's actually still quite capable but has no way of making a living, no way of paying the rent.

Provide images of value for caregiving, paid and volunteer caregiving. You know, shall we make heros of the family caregiver?  Shall we find ways to reach out and keep those folks involved in a community life or is this just a cross you must bear in silence and we don't particularly want to hear about it?

Likewise for paid caregivers.  You know, paid caregivers are treated as the lowest level of labor. They ordinarily have no disability insurance, no health insurance.  They have no union rights, they have no severance pay.  They have very little training.  They are treated, you know, right in there with migrant workers.  And is that the way we want to think about the people who are going to take care of us when we need help with our toothbrushing?

We need to reach out for community support of the frail persons and the caregivers.

We need to find ways to discuss accepting dying, resisting dying, treating symptoms when gains are small and other culturally loaded topics so that our political leaders or people who speak in public don't just get nailed with anything they say.  You know, I hear over and over again in this town how you just can't talk about that.  You say, yes, but if you can't talk about you can't ever solve it. You can't ever come to better solutions.

All of our economics work in health care policy presumes just as a matter of the woodwork that the person would have lived just as long with or without this intervention.  As soon as you get to end-of-life care you realize that the biggest variable in play is how long the person lives and we are barred from even talking about it.  We count Medicare on cost per hospitalization, cost per month, cost per year; not that it actually affects how  long you live.  And that interplay of how long one lives and what the experience is like has just been a third rail of public communication.

Again, I don't have easy answers to this. I'm calling on you as a body that can take on tough issues and help us see what the array of possibilities are, not necessarily to say here's the one right way of going at it.

I think we need to call for more leadership from political and other public figures.  Two weeks ago an article came out saying that influenza immunization might not save lives.  The CDC very promptly issued a whole bunch of press releases saying immunizations saves lives.  Well, my point would be why don't we say "delays dying"?  Why don't we say what it really is doing?  I mean, we're talking about people 80 and up living in nursing homes.  Saving lives is a metaphor drawn from the polio epidemics.  It is a prolongation of life and it might be a very good thing.  But it is a very different thing to spread out the mortality curve across a year by reducing the rate at which people die of influenza in a concentrated way as compared to saving lives for some robust other existence.

Our language is so disappointing in regard to these sorts of things.  We need a serious investment, it seems, in demonstrations, innovations, data, monitoring how the population does, epidemiology.  We are working on such thin data.  I mean, the things I presented to you here, not a single fact that I'm relying on has more than one or two studies behind it.  We have just not invested in this.

We should go to the National Heart, Lung and Blood Institute as the Institute of Medicine did a few years ago and ask the NIH agencies what they were doing in end-of-life care.  National Heart, Lung and Blood came back with that is not in our mandate.  That's the illness that kills a third of us:  It is not in their mandate. 

The National Institute on Aging talks about healthy aging and prolonging life. Well, by damn, I'm going to die old and my National Institute on Aging ought to be doing research on how I can live well in the shadow of my dying.  And we just simply haven't invested there.

So we could speak to those sorts of things from this base.   And we could encourage consideration of these kinds of issues rather than just allowing ourselves to be pulled off in these terribly alluring debates over Terry Schiavo or physician assisted suicide, or any of these sort of numerically smaller issues.  They can be symbolically terribly important.  I don't mean you shouldn't address them.  But you shouldn't only address them.  You should call people to really focus on the issues that matter to lots and lots of people. And, yes, of course also talk about physician assisted suicide and also talk about euthanasia and also talk about Terry Schiavo and so forth, but I would want the core of your report to speak to how the usual one among us is going to come into old age and serious age and have at least a decent shot of being in a care system, being in a social system, being in a community in which you can count on living meaningfully and comfortably right through to the end-of-life at a cost the community can sustain.  And that is quite a challenge and we've only got about 15 years to get it right.  If we don't get it right within the next 15 or 20 years, we are going to learn to walk out on one another.  We're going to have such widespread poverty, so many people sick at the same time that we're going to learn to turn our eyes.

We've got this little piece of time here where we could innovate, learn, build a better care system, build the stories, try things on. And if we don't use it well, we'll reap the harvest of our own insecurities. And those of us who are now still young enough to face old age in 15 or 20 years will get the benefit of our having dodged the tough question, which is that we'll have the care system that we have now or worse.  And that's not enough.  So that's what I want you all to do.

CHAIRMAN KASS:  Thank you very much, Joanne.

Let's open up for general discussion and we'll take another 10 or 15 minutes.

Dan Foster?

DR. FOSTER:  I think that no one would argue that the issues that you address need to be addressed and are very frightening.  You used a phrase a little bit about Washington, but it may be for the larger society that nobody wants to talk about this.  And it's a multiple problem.  I'm not an economist or a sociologist and I may be saying things wrong, but we really have two countries.  You know, we have sort of a third world country which is really at very great risk and then we have a developed country which has high life expectancy and all those things and is pretty satisfied with the way things are. 

I used to run a program on the streets of Dallas for the poor. And, you know, the concept of delayed gain was just, you know, I'll give you a quarter now but if you'll wait to Saturday I'll give you a dollar.  And the kids would always take the quarter now because they didn't know if they were going to be alive at that time or not.  But it's not just street kids that do this.  If you look at American business, you know, there used to be all this discussion about well we ought to plan and do research for what the company's going to do five years down the line.  But CEOs get killed if their stock drops, you know, they know that they ought to be doing this but it drops. 

So the question I'm really wanting to ask here is do you think that in a large country like our own as opposed to let's say a small country like Sweden or so forth, is there any sense of getting a consensus for long-term planning when it seems like everything is determined like the street kid who will take the quarter now rather than the dollar later?  And I'm convinced.  We've been struggling with how to get a system of medical care for a very long time. And so I'm wondering — I mean, the Council — the plans would be sort of a universal plan just like your plan in Washington for complex care. It would save $750,000 the first 100 year life for Medicare and Medicaid. But to get that through, is that more reasonable than to try to say let's take a section of the problem and try to address it rather than sort of a universal dream?    I'm not saying one way or the other. But I'm saying I'm quite skeptical that in the place where I live, and I'm sure it's true everywhere else, there are these huge houses being built and so forth and people who have the money to do that, and I don't think they're going to be really caring about Mrs. So-and-so from the third world or even at the end of their life.  So is this realistic or should we focus more on trying to settle one or two or three small problems even though we ought to be planning 2040 for all of these things?  I mean, that's a long question, but it's the realism of the idea that you can change society by saying this is a moral or ethical and economic and common sense way to do it.  I mean, I'm just not sure that society in a large country of different things it's going to be possible to do. I doubt that the Congress or anybody else, or the President or anybody else is going to buy into that.

DR. LYNN: Yes, it certainly is possible to sort of throw up one's hands and expect the worse.  I guess as a long time practitioner among those who are sick and dying, I've been blessed with an eternal optimism.  You know, if all that list of the arguments we're giving, you know economic and social and moral and so forth isn't enough to move us, then we really are doomed.

There aren't many other forums in which these issues can have a voice right now. They're not going to come up in Congress, you know.  They aren't going to come up in the business environments that you speak of.  So this is one that really could say, you know, think about these framings, think about these alternative framings, think about the kinds of data you could bring to bear.  You know, why don't we have a Labor Department report on family caregiving?  Why don't we have a Labor Department report on paid caregiving?  You know, we simply have shown the light in that corner.

You know, I don't think that you can go from here to some very good reliable, efficient care system in one swoop.  I think it's going to be a whole lot of small steps. No matter how we think about it it's going to be a lot of small steps. But either we can make a whole lot of small steps and have some shot of getting there or we could say it's just never politically convenient, it's never expedient.  You know, we're going to take the issue of the day and not see how it really adds up.

The Medicare debates last year made a blank check for the drug companies. The Medicare coverage decisions make a blank check for device manufacturers.  I want to see the first time we make a blank check for Meals on Wheels.  I mean, you know we just have our priorities so out of kilter with this population.  And who can speak to that?  It seems that this is the kind of place that could at least try to find the sort of cultural spots where we could find some traction.

And I don't have a nice simple, you know, here's the roadmap to nirvana.  You know, it's much more couldn't we start finding the points of leverage, and they aren't going to be in physician assisted suicide and they aren't going to be in something like that that's largely a highly emotional, personal commitment issue.

The points of leverage for the kinds of change I see are things like the financial issues, the effects upon families, the realistic characterization of what we face in terms of disability farther out.  You know, almost everything we can do for preventing serious illness increases disability because it gives you the chance to live into old age, which I think is a good thing.  I mean, as you were saying it's a good thing to get the chance to live into old age. But we should then be figuring out how we're going to have housing codes that don't let us build bathrooms that don't have handrails.  I mean it's a thousand simple things that we need to put in place in order to live well when we have a large proportion of the population very sick at the same time.

So could we get there?  There are a couple of things that work in our favor for reform.  One is that disparities of the sort that you describe in your work in Dallas actually become less in old age and in serious illness. It's a very interesting, and I think rather wonderful fact, that we spend almost as much as a community on the rich and the poor at the end-of-life. The last year of life has almost no disparities.  There's some disparities on exactly which services, but there aren't disparities on the aggregate — or not big ones, on the aggregate investment because the need is so overwhelming.  You know, at the time that people are sick enough to die we actually do rally and support one another.  At this time we might lose that, but we right now do. That's a leg up, and so is the fact that all of us face it.  It's never somebody's minority problem. It's our problem. It's my mother's problem.  It's your mother's problem. It's my problem after she's gone.

So the fact that we are in a sense all in it together maybe gives us a point of political leverage. I'm not sure if that'll be enough.  But, you know, when casting about desperately for a lifeboat, you know, I can find a few that might get us somewhere.

DR. FOSTER:  Listen, I'm 100 percent in favor of everything you say.  But, you know, you could do what you're going to do if you let's say don't have to spend billions of dollars in a war, for example, and you got the medical care at 16 percent.  I just don't believe the political system at this moment is such that you can do the whole thing.  So I'm much more in favor of trying to say, well, what would be some — I don't want to say this over and over again.

DR. LYNN: Yes.  But our cultural —

DR. FOSTER:  But I think that if we could come and say if we did these three things now, that this would help a whole lot whereas for 2020 we need to do something much more.

One of the things that I think I've learned in medicine and everything else, if you have too gigantic a thing, then everybody throws up their hands and says well I believe what she's saying and I really want that to happen, but it's not going to happen. So it's much more helpful to get, let's say if you got a problem in your community, to get an ambulance system that works than to say well we've got to have good care for everybody who is there.

So all I'm asking for is if you could help advise us in terms of priorities of what you say that might be accomplishable in the shortrun while we try to look forward to the things.  That's all I'm trying to say.

DR. LYNN: But we need to set, it seems, both the structures that give us the possibility for that long-term planning.  Why don't we set up somebody?  The Institute the Medicine or somewhere that is responsible for trying to lay out the 20 year plan, you know.  But then in addition nurture the things that are happening right under our noses.

Medicare has come out with a whole set of quality criteria for hospitals.  They have come out with a set of quality criteria for nursing homes.  They may not be perfect, but they are the kind of small thing.  You know, could we get the rate of restraints in nursing homes down to effectively zero?  Could we get the rate of pressure ulcers down to some tiny, tiny number?  You know, those are sort of the low hanging fruit.  Could you go after some of those things while working toward — can we find a way to keep family caregivers from being utterly impoverished in old age, which I agree with you is a much more intractable problem.  But can we try to do both, the planning ahead and setting up some ways in which the society can hear about the bigger changes that we might want to contemplate while also making the small steps we can make this year?  And it seems that any kind of intelligent reform is going to have to do both.  We're going to have to figure out how to change how the money runs, how the human resources run and are developed and also set some standards, declare some errors, you know create some priorities.

You know, effectively last year or two years ago now when Congress passed the Prescription Drug bill, they inarticulately stated that we're going to have a priority in a blank check approach to prescription drugs.  So a $30,000 drug is going to be covered, and we have many of them coming on line.  There's no similar statement about the prevention of pressure ulcers.  You know, a person does not have a right to a pressure reducing mattress because they can't get out of bed.

And so we're saying things as we move along about our priorities, we just need to maybe call them into question.  Surely it is more important in a nursing home to have pressure relieving mattresses than to have cholesterol reducing drugs.  And yet within a year I'm going to have free access to cholesterol reducing drugs and not free access to pressure reducing mattresses.

There are many such examples we need to bring to bear and have people debating them and find the ways in which they can grab the public imagination.  That's why I think we need to have the Golden Girls out there talking about what it is to live in a wheelchair or to face dying with a fatal illness. Because those are the kinds of things that people can try on and figure out — well, is that how my family would react? Iis that is how I would want them to react?  And make a whole lot of small steps.

And again, it might not work.  I might come to old age and realize that it's all been for naught and we have only the inadequacies of the care system exploded by further investment in devices and drugs and medical treatment and perpetual under-investment in hands on care that we were inadequate to alter.  But if we do that, I do think we'll learn to walk out on one another.  We will learn how to let old ladies be homeless.

CHAIRMAN KASS:  The hour is late. There are three people in the queue.  And let me ask that the three make their questions short or comments and then we'll let Joanne just finish as a comment.  Hold off on responding. We'll just get brief comments from Gil, Peter and Ben. Let me ask you be brief with them.

PROF. MEILAENDER:  I'm just going to pass.  It would follow up on Dan's, and I think we've taken it as far as we need to take it right now.

CHAIRMAN KASS:  Okay.  Peter?

DR.LAWLER:  Our first speaker this morning got me all optimistic, which was truly out of character.  But you have described what you said is a predictable calamity and you're frustrated because we can predict what's going to happen, but despite your best efforts as Dan pointed out we probably won't be able to stop it all that well because here's the problem very quickly.  We live in a society which due to our great medical success more and more people will die of chronic illness or require a large amount of caregiving at the end-of-life. Meanwhile, this same society is eroding the reliable foundations of caregiving, which are two. One's the family, and the other is people willing to work for subsistent wages in a job we don't value all that much because we kind of regard it as merely custodial that any fool could do.  So, given this, given that there's a broader cultural problem here, answer one of these two questions because we don't have much time.

One, when President Bush gives his next State of the Union on the ownership society, how would you work this stuff in?  Or, number two, what kind of compelling narrative about honor would move Americans in terms of caregiving?  Pick your favorite.

CHAIRMAN KASS:  Let's get Ben's comment and then, Joanne, you're not obliged to write the next State of the Union.

DR.CARSON:  Well, I very much sympathize with everything you've been saying, and obviously they're issues that concern us all and the lack of conversation about it. And I very much understand the pragmatic point that Dan Foster is making also.

But I wonder if you think it would be possible maybe to bring these things — because we are a crisis-oriented society and we only do things when it's a crisis — to advocate maybe a partial solution such as a government pay for catastrophic health care which would then force us to examine issues which we neglect at this point?

DR. LYNN: I'll take up Dr. Carson's comment first, I think.

I guess I am perpetually humbled by how little I know and how unpredictable major policy shifts end up being.  So maybe catastrophic coverage, especially if it covered long-term care as well, is the right direction to go.  And, boy, would I love to free a state to do it or a region, or a population of people who signed up within a region.  You know, maybe everybody who signs up in Iowa or Nebraska or something.  Let's see how it works. Let's learn.

I have some skepticism about the way we now put together catastrophic coverage which doesn't include long-term care. I think we are hiding lots of the costs in the burdens we're imposing upon women without taking account of the economic value of their service.  And the catastrophic coverage as we've mostly talked about has only been doctor stuff. So, if we get seriously into long-term care, then we're going to have to figure out how to deal with personal wealth.  And I'd love to see some substantial groups of people trying to figure out that.

So, I couldn't write exactly what I'd like to see put in place, but I'd like to see a dozen very smart people or groups trying it out in populations willing to try to be the pioneers.

And in the same way in answer to a couple of your comments, you know how would I deal with the ownership society and write a compelling narrative about caregivers.  I mean, I think that we have to be very careful what metaphors we put forward and maybe to just deliberately try to put forward a multitude of metaphors that we could try on.  You know, what got Medicare passed and what got us into the idea of their being social insurance was a sense that we were all in it together and that we were not going to let the weaker, the poorer or the people with fewer opportunities, whatever, among us fall farther than this, you know whatever the "this" was.  That we were going to guarantee at least this level of income or at least this level of opportunity.

So that's a different idea than the ownership society.  I mean, we commonly hold conflicting ideas in our minds.  One of my colleagues used to say the reason the good Lord gave us big minds is so that we could hold conflicting ideas far enough apart that we could still function. 

So, yes, we do want to be an ownership society and have an investment in our community and some control over our assets. And we also want — it isn't just my mother that I want taken care of; I want your mother taken care of. I want anybody's mother taken care of.  And we also feel ourselves to be part of communities and communities that to our credit have extended beyond narrow bonds of relationships or ethnicity or religion, we have in general been a reasonably generous society in wanting there not to be grinding poverty in our communities and being troubled by the persisting pockets of grinding poverty and lack of opportunity.  When it's also up against the end-of-life, I think it even tugs at us more because now the person really couldn't just be a virtuous person and go out and get a job, but now they really are up against mortality which is one of those grand leveling forces, you know.  No matter how rich or poor you've been, you go to your grave without assets.  So there's a certain opportunity it seems to maybe find some metaphors.

I mean, I've been a family caregiver myself.  I've certainly taken care of lots and lots of family caregivers.  I think there are compelling narratives.  But they engage in the community in some ways that we have not been familiar with engaging them.

I was the first hospice doctor here in Washington.  We used to sometimes put signs on the elevators saying there's someone in your building who doesn't have any friends in the building and has lived here 30 years, a common occurrence, who wants to try to stay at home to as close to the end-of-life as she could do.  If there were 8 or 10 people who would volunteer to help, she could stay here a lot longer. And, boy, there was never a time we didn't get 8 or 10 people. 

There are sources of community spirit that we have just not even started tapping into. But we have to work with this. We have to figure out how we're going to make this work for us and what the balance is between those and our sentiments that we own what we own and we should have authority to control it.

But, again, this is the kind of group that can bring those to bear and can find some pros that might move some people, might help us frame things in some better ways.  There aren't very many such places.  There aren't very many forums that can say risky things, that can call on us for our deeper moral commitments and our long-term interests in a way that this kind of group can.

So, I guess the reason I'm delighted to have been asked to come here is to call on you to take that chance and to help us find the stories, the language, the constructs, the way of thinking that might help us meet these challenges in ways that a 100 or 200 years from now our descendants can look back on that and say boy, weren't they a special group of people.  You know, they really found the things that were of value. And we've lived those out rather than saying they let things happen just willy-nilly, they got caught in the sweep of events, never really stood back from it, never really figured out where our commitments lie and, therefore, terrible things happened.

You can't stand against the tide, but a whole lot of people standing against the tide can turn it a little. So that's what I hope you'll do.

Thanks for having me here.

CHAIRMAN KASS:  Thank you very much. Joanne, like most prophets, throws down a large challenge to the rest of us. Dan Foster, Dan and myself, all of us, face the difficult task of how to translate that into a kind of language that might get a fair hearing for the things that we all care about.

Joanne I think exhorts us not to sell ourselves short.  Dan Foster reminds us that if we try to do everything at once, we will be ignored.  And I think it remains our task to figure out, to negotiate between the best and the possible, holding out a vision and doing what we can.

So thank you very much for this very pointed challenge to the Council. We will do our best.

We're adjourned until — lunch is a little short, but we have a guest at 2:00. Let me urge you to be prompt.

(Whereupon, at 12:43 p.m. the meeting was adjourned to reconvene this same day.)