"Taking Care": teleconference transcript

Participants present:

Dr. Leon Kass, Chairman
Prof. Rebecca Dresser
Dr. Daniel Foster
Prof. Mary Ann Glendon

Kevin O'Reilly, American Medical News
Shirley Haley, Research Policy ALERT
Ed Davidson, Insight Therapeutics
Andrew Ferguson, Weekly Standard
Don Reynolds, Center for Practical Bioethics
Janet O'Keeffe, RTI
Nancy O'Brien, Catholic News Service
Claudia Kalb, Newsweek
Dan Vergano, USA Today

September 29, 2005
12:15 p.m. CDT

Coordinator: Hello and welcome to the "Taking Care Ethical caregiving in Our Aging Societ" conference call. Our speakers for today's conference will be Dr. Leon Kass, Professor Rebecca Dresser, Dr. Daniel Foster, and Professor Mary Ann Glendon. Online today, we are joined by Richard Roblin of President's Council on Bioethics' Staff Member; Kevin O'Reilly, American Medical News; Shirley Haley, Research Policy ALERT; Ed Davidson, Insight Therapeutics; Andrew Ferguson, Weekly Standard; Don Reynolds, Center for Practical Bioethics; Janet O'Keeffe, RTI; Nancy O'Brien, Catholic News Service; Claudia Kalb of Newsweek, and Dan Vergano of USA Today.

At this time, all participants are in a listen-only mode. After the presentation, we will conduct a question and answer session. At the request of the company, this conference is being recorded, Should anyone object, they may disconnect at this time.

It is now my pleasure to turn the meeting over to your host, Dr. Leon Kass. Sir, you may begin your conference.

Leon Kass: Thank you very much. Thanks to all of you for your interest in the work of the President's Council and in your interest in our latest report, our 7th report. This one, "Taking Care Ethical caregiving In Our Aging Society."

The plan for this conference call is that I will begin with a synopsis of the report, highlighting at least one person's view of some of its main findings and recommendations. And then, we will go directly to comments from my three Council colleagues: Rebecca Dresser, who is the Daniel Noyes Kirby Professor of Law and Professor of Ethics and Medicine at Washington University in St. Louis; and Dr. Daniel Foster, who is Professor of Internal Medicine and for many years, the chair in the Department of Medicine at the University of Texas, Southwestern Medical School; and Mary Ann Glendon, who is Professor of Law at Harvard. These three colleagues have been especially helpful in the framing and development of this report. Professor Dresser, especially on the materials, having to do with advance directives, Dr. Foster on the medical and clinical aspects and the ethical aspects of clinical medicine, and Mary Ann Glendon on the larger social policy as social dilemmas of an aging society, that’s the subject of chapter one.

The purpose of this report is to focus public discussion on a not very cheerful, but increasingly important topic, the topic of aging, dementia and long-term care. We'd like to encourage policymakers to take up the large social questions that we have identified here and we would like to try also to articulate certain ethical principles and to offer guidance for the caregivers, both professional and familial, who struggle now to care for those who can no longer care for themselves. And throughout this report, as in our other reports, we strive to emphasize the larger humanistic and ethical dimensions of this public policy questions and not just their institutional, economic and political ones.

The report is basically in three parts and could be presented as three separate reports, though they are, as we indicate, linked by a certain kind of logic. The first part is in the first chapter on the dilemmas of an aging society, tries to paint the big picture. And it suggests that we are on the threshold of an unprecedented mass geriatric society with more and more people living into their 70s and 80s, many well into their 90s, already the largest, the most rapidly growing segment of the population that are people over 85, and their number amongst us expected to quadruple before mid-century. This is, by and large, good news for all of us because it's being accompanied with an improvement in the health of the elderly. People are not just living longer, but they are living longer in a healthy condition and enjoying these golden years. This is a great blessing and we can expect further improvements along these lines.

However, less well-known is the fact that these blessings of greater longevity are bringing us profound new social challenges, most particularly as a result of the fact that people are living long enough to suffer serious age-related chronic diseases including dementia. Already, the most common trajectory towards death, afflicting about 40% of us, is a period of prolonged dwindling, enfeeblement, frailty and dementia lasting up to a decade. There is a graph on page 14 of this report, which is pretty quite striking. And in particular, in addition to this general dwindling, there is the special challenge for patients with dementia. Alzheimer's, the most common form of dementia, already afflicts over four million people in this country. That number is expected to triple by mid-century.

So here we have a situation with a huge increase in the number of people needing long-term care, not for months, but for years: costly care, demanding care, everyday care. But it comes at a time when the number of available caregivers is dwindling: smaller families, less stable families, geographical mobility, men and women both caught up in their responsibilities at work, and a great difficulty in keeping, preventing the turnover of the professional caregivers who are underpaid and under appreciated. So the first message of this report is to declare that we are on the threshold of a looming crisis in long-term care. This is the theme of the first chapter and I think it serves as a healthy counterweight to all of the talk that we hear, perfectly reasonable talk that we're hearing about the importance of healthy aging, people 85 playing tennis, enjoying their vigorous sex life. That is all true and much to be appreciated. But there's another part of this picture, which we ought not to neglect and is coming upon us. It's already here and it is affecting almost every family.

Second, is a discussion not so much of the social question, but of a particular form of addressing the anticipated dangers of such an outcome for individuals, the use of advance directives, advanced instruction directives, the specification of conditions regarding when this treatment should onebecome incapacitated, advance proxy directives to name people who make decisions in one's stead under those circumstances. And without rehearsing all of the details, the Council has come to the conclusion that while they play a useful role in some circumstances and should be considered in all circumstances, the Living Will, the written instructive, instruction directive is impractical, an often misguided way to try to deal with this problem in advance. It does not substitute for the need for human caregivers on the spot who are regularly called on to make numerous and very difficult decisions under evolving everyday circumstances and there is no way in the world that these things can be specified in advance. Written instructions to issue heroic measures does not substitute for that day-to-day caregiving. That would be the second conclusion of the report from the second chapter.

On the other hand, we do endorse as very beneficial the advance proxy directives where people do, after suitable discussion, named love ones or friends who can in fact step in when they can no longer make decisions for themselves, and we also emphasize the importance of advance care planning, not so much the writing of legal documents, but a serious discussion among the patient's family members, healthcare providers, social workers, members of the community, to actually think through these things which are coming and how best to care for the individuals in need.

Since we've identified the primacy of caregiving and the unavoidable necessity of devoted caregivers, we then raise the question which occupies the rest of the report, of all the report. How should caregivers decide and act when they care for people with dementia? The general principle, which is the basis of these reflections, is that human beings who are dwindling, enfeebled or disabled in body or in mind, remain equal members of the human community. We are obliged to treat them with respect and to seek their well-being here and now.

And this means that the goal of care should be, under all circumstances, the well-being of the patient here and now, not necessarily the instructions written long ago, but the person who has particular and evolving needs in the present. And the goals we articulate uniformly affirm is to serve the life of the patient still has, regardless of its diminution. So that's the goal of care. Other things, family considerations, previous wishes of the patient that are enter in, but the major obligation is to give the best care for the person right before us.

We set down, since it's impossible to write an algorithm or prescriptions for what that best care would be case-by-case... We do, however, indicate that there are certain ethical boundaries that should give guidance in the search for best care. On the negative side, euthanasia and assisted suicide are antithetical to ethical caregiving for people with disability and we call for the opposition to these practices in all circumstances.

On the other hand, because the goal of ethical caregiving is the well-being of the patient here and now and not necessarily the extension of that life for the postponement of its end, as long as medically possible, we also articulate certain conditions that would justify the forgoingof life-sustaining treatments when such treatments are unduly burdensome to the patient or where they are not efficacious or whether they would interfere with a comfortable death of a person already irretrievably dying. These are boundaries. They do not just tell you what to do, but they simply set certain kinds of outer limits and rules of thumb.

The fourth chapter is in fact, all about the hard cases in which we try to see how ethical principle on the one hand and loving prudence, on the other, really grapple with some extremely difficult cases. And while there might be some differences amongst us as to where those cases come out, I think all of us are reasonably pleased with a kind of moral seriousness in which we try to show how reasonable people appealing to these goals and these boundaries, which struggle their way to this conclusion to find a conclusion that serves the best needs of the patient before them.

In the recommendations, which form a fifth chapter, Conclusions and Recommendations, we go beyond the ethical considerations of individual care to return in very small compass, to the larger social questions that we addressed in chapter one, recognizing that we have ourselves not offered any particular remedies or solutions to any of them. But insist that they believe that we can somehow muddle through with legal documents or the advance directives or by simply giving ethical guidelines to caregivers that this is inadequate. The ability of family caregivers to give care to persons with dementia will depend greatly on the economic, social, and communal resources available to them and we indicate a whole series of topics that need public policy attention, including insurance that meets the special needs of people under these circumstances, long-term care insurance, respite care for caregivers, attention to the appropriate kinds of institutional housing, home care services, technologies to assist giving basic bodily care, the importance of specific and faith-based support groups, etc. These are on page 218 of the report.

And finally, because we recognized that we have taken an early step in looking at this larger problem in a synoptic way, we call for the establishment of a Presidential Commission on Aging, Dementia and Long-Term Care. This is a national problem. It deserves national attention at the highest level. We need to collect reliable data on the demographic, economic, and policy realities of the present to make reasonable projections regarding the challenges of the future to review what resources we have and to identify whatever model programs are working that could be replicated on a larger scale. We need a federal attention to develop targeted and achievable reforms that would help support the caregivers in giving their care and to provide safety nets for those people who have no caregivers to speak of or don't have the resources. And finally, we need someone to help catalyze and pull together the activities of various relevant agencies: state, federal and local, and the various organizations that are working in this area.

That, I think, is a synoptic view of what we have done and what we are recommending. Let me just then turn next for her comment to Rebecca Dresser.

Rebecca Dresser: Thank you. I'd like to mention some of the reasons why we expressed reservations about instruction advance directive, living wills. Some of them are general, general shortcomings. One is that, relatively few people complete instruction directives. Another is that, people who do complete directives usually make general statements in these like, "I don't want any heroic means if I'm dying." So these statements don't often answer the specific treatment question at the bedside. Unless someone has the precise diagnosis such as advanced cancer or advanced AIDS, it's very difficult to predict all of the different treatment issues that could later arise.

Another problem is that, when people do make specific choices in a living will, they may not be based on a good understanding of the treatment situation that later exists. Imagine, sitting here now and trying to figure out probably 200 different treatment scenarios that could arise and a future period of dementia. It’s very difficult and there’s no way that we could possibly understand the information that we like people to understand when they make medical treatment decisions.

And finally, our last general problem is that the instructions can be difficult to interpret. It's often difficult to figure out what the author of this document really meant when you're trying to apply it to a specific treatment situation. A practical problem is that these papers get lost. They don't get transferred with the patient and they're just not available.

Some specific problems with dementia arise because people who are diagnosed with dementia are obviously older and they are vulnerable to all of the other health problems that can go along with aging. They can live for many years after they lose the ability to make their own medical decisions. So a number of different kinds of treatment issues may come up. And for most of this time, they are not unconscious. They are very conscious. They are very aware of pain, distress, discomfort, as well as pleasure. And they're also vulnerable to special distress because they often don't understand why a particular procedure is being imposed on them. You can't explain, "Well, this will make you feel better later."

Example, the cancer diagnosis for someone with Alzheimer's. Should someone receive treatment? What kind? Chemo with the side effects? If you withhold treatment, will the tumor grow and make the patient uncomfortable in that way? Heart disease: Imagine all the different treatment issues that may have to come up. So these are an array of complex choices that can't be easily or fully resolved in a set of instructions given before dementia occurs. So as a result, this report focuses on different choices that can arise at the bedside with examples of reasoning that families, doctors and nurses, could apply to reach a treatment decision. And I think Dr. Foster will carry on with this theme.

Leon Kass: Thank you very much. Dr. Daniel Foster?

Daniel Foster: Well, during the course of the discussion on this volume, I made the point that I did not think that those directly involved in care of the elderly or elderly demented, in real time, would likely be immediately influenced by the reasoned arguments contained therein. That's not disturbing, I think. An oncologist may be a terrific oncologist without understanding the molecular biology of a tumor suppressor gene or an oncogene.

But as the basic science information seeps down about how these genes work and so forth, she’ll get it, read it and will learn from it. I think this volume will be initially read by bioethicists or people who are interested in bioethics and argued if people will agree with it or disagree with it. But I think the intent of Leon and the rest of us is that these general principles will seep down so that those who are operationally taking care of real patients in real time will be influenced by some of the insights and decisions.

In general, at the present time, I think the physicians will continue to follow the ancient requirements of being a true physician. They’re pretty simple. One, to be competent, that's the first ethical rule. If you're not competent, you're not ethical. Second, to prevent premature death and cure disease when that's possible, to allow to alleviate symptoms when cure is not possible and to comfort always. That's what the ancients called the priestly function of the physicians, the sort of singular beneficence that Dr. Osler talked about a year ago. I think these work pretty well, these practical rules. By the way, I'm just going to talk about physicians real quickly here and not about the nurses and all the other important people there.

At the beginning of chapter four, there's a sentence down, which I thought is pretty profound. It says, "Every clinical case is unique within numerable medical and personal factors that need to be considered, factors that are always changing.” Let me just illustrate that with a couple of quick cases I was involved in, both in the hospital in the last five weeks. Both of them were with named emeritus professors of medicine in our medical schools, all the people who get obituaries in major papers, things of that sort. It shows that the first case was 89 years old, the second one, 92 years old. Both of them turned out to be different, but fairly not that complicated. The 89-year-old had had a diagnosis of cancer four years ago and when the oncologist ran out of weapons, I took over his care and I admitted—as he began to go downhill, I admitted him to hospice about two weeks ago and expecting his death within six months. It occurred much more quickly.

About two weeks before he entered the hospice, his wife told me about this. He said to her, "Honey, I think it might be better if I just go ahead and die now." I neglected to mention both of these persons had mild dementia, but were conscious and recognized people and so forth. His wife in response said, "Well, it might be better for you to die, but that's not in our hands. That's in the Lord's hands." They were religious people. And whereupon, he broke into laughter and he said, "That Lord has really been good to me." I saw him about 30 hours before he died, he just turned over and went to sleep and he died. That was a wonderful exit and we had his service a week ago.

Now the 92-year-old spent his last nine days in the hospital. And I want to make a comment after this, a final comment. He came in with a bladder infection that got into his bloodstream. He got pneumonia and then heart failure, and a terrible heart failure. We could hardly keep his heart going. The only thing that could have saved him would have been a heart transplant. I mean there was nothing that could be done. We were driving it with drugs and so forth. His wife and his two Ph.D. sons wanted full treatment, which we gave. He got steadily worse. He told me he did not want to die, but the family had said in conversations they didn't want him intubated as a vegetable and they had a written directive with DNR enclosure, as Rebecca was talking about.

Sort of miraculously, he had a respite. He turned around in about three days. So much so that he came out of the ICU and was put into a room and the next morning, had a cardiac arrest at 6:30. He was resuscitated. It was a tough, long resuscitation. When I got there, because I wasn't at the hospital at that time, it was clear that he had been intubated and he was clearly—there was nothing left; he was brain dead. Fortunately—and I worried about how long am I going to deal with this person on an intubator like this. Fortunately, he died spontaneously four hours later.

Now this second case leads me to a statement, which I can't prove, but I think is probably right. The volume has a central theme of respect for life. And it sort of has, unwritten, a concern that the elderly and particularly the elderly demented will sort of end up neglected, sort of tossed on a trash heap, if you will. I think that's wrong.

In fact, I think the more common error is doing too much, that physicians do too much with family things. It's not the neglect, but it's doing too much, I think, that worries me. I'm telling you in a teaching hospital, if you have a code blue or whatever it is, the residents run to the room, they don't take time to ask if there's a DNR. They just resuscitate the person. That's what happened here. We had a DNR. The family did not want him intubated. But they, as doctors, and particularly young doctors, they want to save the life. They forget about the premature death. I think that that's an issue.

The last thing I want to say is that these people were in educated families. They were well off. I take care—most of the time, take care of the poor in Parkland Memorial Hospital and it's awfully hard to talk about the issues that we've been talking about these recent dilemmas in this volume. When you’re poor and lonely and have no place to go and some of those – when you get down to that, about the only thing we have left is mercy.

Anyway, my bottom line is that these things are all different. The individual cases are all different. You have to adjust to them. But if you follow the principles that physicians is always—you’d probably make the right decisions most of the time. So, I'm ready for Mary Ann to take over.

Leon Kass: Thank you. Mary Ann Glendon, please.

Mary Ann Glendon: Thank you. I’d just like to say a few words about why the Council felt the need to address this subject just now and why we thought this subject was appropriate for a bioethics council to address.

By coincidence, our report appears just as the country is absorbing a painful lesson about the need for advanced planning in the wake of the recent hurricanes on the Gulf Coast. And with that heightened awareness of the importance of thinking ahead about problems that you can see coming down the pike, the moment seems opportune to ponder the challenges of an aging society. In fact, it was the hope of avoiding hasty and ill-considered solutions to those challenges that prompted the Council to prepare the report.

The report sounds a warning about the perfect demographic storm that will make landfall in the United States about six years from now as the baby boomers begin to reach retirement age. And unlike a hurricane that might veer off harmlessly at the last moment, the approaching strain on our caregiving, healthcare, and Social Security system seems virtually inevitable. Its worst effects can be mitigated, but only if we begin planning now as individuals and families and as a society. The report explains how the combination of greater longevity and low birth rates is bringing into being a society that will be quite unlike anything we have ever seen before.

As the chairman has explained, an unprecedented proportion of the elderly will face lengthy periods of disability before death and at the same time, the supply of caregivers is dwindling and the ratio of active workers to dependent persons is declining. At present, the country is quite unprepared to deal with those challenges. There has been very little public discussion of them. And what discussion there has been has been mainly by experts who tend mainly to focus on the economic implication.

A major purpose then for a bioethics council to prepare a report is to make sure that we do not lose sight of the important ethical, medical, psychological and social issues that are involved. The stakes are very high. Unless we develop adequate, prudent and humane responses, the risk of divisive intergenerational competition will be great, and ethical concerns may will be brushed aside in the scramble to adjust to the new situation. The only question is whether the adjustments will be made in haste or proceeded by adequate study and deliberation. Katrina and Rita have reminded us that the lack of planning is costly, both in human and economic terms.

Back to you, Leon.

Leon Kass: Thank you very much. Thanks to my dear colleagues for your expansions and additions and developments of things in the report. Let me simply throw the conversation open to our friends from the media and the four of us will keep our mikes open and you can address questions to individuals, but we will chime in with where we think we have something useful to say. Please.

Coordinator: Thank you. Kevin O'Reilly, American Medical News.

Leon Kass: Hello.

Kevin O'Reilly: Hello. Would you elaborate a little bit on why you came out against any kind of physician-assisted suicide? What ethical principles does that contradict?

Leon Kass: Well, a couple of things should be said. First of all, whatever one might think ofphysician assisted suicide in general, it is largely not really relevant for the care of these millions of people with diminished capacity and dementia. They cannot make an informed choice to request such a matter. And indeed, even if one would make an argument for its utility in some rare cases, it's a dramatic and publicly exciting topic to debate, but it's very, very, very marginal to the problem that we are here talking about, unless of course, people have in mind to soften up the country to actually dispatching people first by saying, "Well, let them request it," and then as we’ve seen in Holland where you’re supposed to have merely voluntary physician-assisted suicide. The government's own report show that people are being dispatched without their knowledge or consent, even some of them fully conscious and capable of making decisions.

So the first thing is to say that this is not front and center in the subject of long-term care. But second, I think the Council 's view was that whatever might be said about requests made by individuals early in life, that it's very, very difficult as a caregiver charged with care for somebody else, to devote yourself whole-heartedly to their well-being if you can always think of easing them out or engineering a decision to ease them out as a so-called therapeutic option. When people begin to do that, especially in diminished populations, what they're in effect doing is pronouncing the kind of adverse judgment on the life the patient has.

And our view is that, disability is not a disqualification from life and appropriate care. To be sure, certain disabilities make certain kinds of treatments, burdensome and even torture and should be foregone and report doesn't say that. In fact, the report endorses the view that one should sometimes step aside and let nature take its course. But the active dispatching of the patients is incompatible with the medical vocation and sets what seems to us a very dangerous precedent and really doesn't have a much of our role to play in this particular subject if people are on the up and up.

Rebecca Dresser: May I just add that, remember, we're talking about people who have a diagnosis of dementia. So even people in an early stage who hear the diagnosis and then say, "Well, I want to commit suicide," I mean, one serious question would be, "Are they mentally able to make a decision like that?" Their reasoning capacity is already impaired. So for the most part in this population, you'd be talking about active euthanasia without clear consent. And I think that's a practice that many people agree is ethically impermissible.

Kevin O'Reilly: Yes. So for this—just to follow up on that.

Leon Kass: Is this still Mr. O'Reilly?

Kevin O'Reilly: Yes. It is. Kevin O'Reilly, American Medical News. So for the purposes of this report and the Council 's view on physician assisted suicide, you're limiting or narrowing that view just to the mentally diminished population with dementia or is it a view across the board or for people with other diagnoses?

Leon Kass: Well, I think I suspect there would be—it’s not unanimous agreement. There wouldn't be a unanimous agreement with respect to all cases. But that was not the theme of this report. Look, it's very important that the dramatic end of life decisions, heroic measures questions or suicide questions, they capture public attention and not wrongly. But we have focused all too much of our attention either on writing instructions in advance or on these last ditch questions of pulling a feeding tube or discontinue a respirator or giving some kind of lethal dose.

The real question—and it’s the question that this report wants to focus on is, we've got people who are going to be living for a protracted period, incapable of caring for themselves, sometimes severely incapable and eventually bedfast and needing absolutely every basic need attended to by others. The questions are daily care. The questions are the everyday decisions and not just the heroic ones. Unless people are suggesting the assisted suicide means as a kind of beginning, a stocking horse for removing from our roles these burdensome lives that seem not to be all that worthy and that are very costly to maintain, it's not relevant to this discussion. I think if we wanted to have a paper on assisted suicide and euthanasia, we would issue a separate report and argue it through. But for this particular document, the conclusion is, euthanasia and assisted suicide are antithetical to ethical caregiving for people with disability. Some of us think it's antithetical to ethical caregiving period, but this report confines itself to that subject.

Kevin O'Reilly: Okay. Thank you.

Coordinator: I am showing no other questions at this time, sir.

Leon Kass: Give them a moment. Some of these people I know they are not shy. Mr. Ferguson, are you there?

Coordinator: We have another question from Kevin O'Reilly of American Medical News.

Kevin O'Reilly: Since no one else seems to be taking advantage, my question is for Dr. Foster. Would you expand a little bit on -- I write for physicians on physician ethics -- what is happening now? What should be happening that the physician community should be paying attention to these issues and the complicated ethical questions involved in them? You talked a little bit about the three principles that are played for physicians under all circumstances. What more should be added to that, to these, you know, complicated circumstances?

Daniel Foster: Well, there are always—there are complicated things that come up that are hinted at in the volume. What the argument that I was making for the—if you’re correct at this, that the number one rule that I add is not in the one from antiquity, that is that you have to be competent and that's the most important thing to do, which means that you're a live student.

One of the huge ethical problems that we have now for physicians all over is the enormous increase in medical knowledge that is occurring. Last year, there were over 500,000 papers published in the 4,000 journals that the National Library of Medicine archives or Pub Med or … and so forth. That's a paper a minute and nobody can read those things. I read all end. Much of it is trivially new, but you have to dissect out what is importantly new. That means that physicians have got to be able to alter the way that they get new information that changes things that happen in order to remain competent because, as I’ve said, if you're not competent, whether it’s a demented person who doesn't know anything about what you're doing or whether it's somebody early in life and mature, I think that is one of the really critical issues that's facing American medicine.

Now, the science keeps increasing. Medicine is now based almost entirely on science. The new things in both clinical science, clinic trials and so forth, and how to manage that is a huge problem. I just gave a lecture on this yesterday to the pediatric residence at Southwestern Medical School about how to read and you have to change how you read journals and so forth. So I think that is a huge issue.

The other issues are sort of standard and the only thing that changes is that the tools that we have, I don't think there are major changes there. I had said that we are charged with preventing premature death and curing when that's possible or alleviating symptoms when we can't cure and then to comfort always. I think those things are not markedly changed by the changes in medical science.

Now, we also do have the issues that physicians can't control. They can comment on, but they can't control. That is the cost of drugs, the cost of modern imaging, all of these costs. I don't know of the Gross National Product gets up in a percent of 16% or whatever it's going to get to, then we have to decide what we can afford to do and I think that we do, sometimes we do too much. It's a long answer to your question, but this is the second thing I want to say we have to worry about.

Many people as they age are on nine or ten drugs; we oftentimes have recommended nine drugs for one disease, congestive heart failure. And they're all based on studies that show a little bit of an increment in the quality of life or the length of life. But the question is, can we afford to make these small changes or you get a new anticancer drug and for colon cancer. What it does is on average, adds two months of good life. Is that worth a billion dollar drug? It's not for us to decide that. The society has to decide if they’re going to pay for everything or not. But those are two great problems, I think, in terms of that impact to the care of patients that are really a part of the new things that are going on. I don't know whether that answers your question or not.

Coordinator: Our next question comes from Claudia Kalb, Newsweek.

Leon Kass: Hi.

C. Kalb: Hi. Thank you. I wanted to ask two questions. One is a sort of big broad question about historical context and sort of how did we get into this fix and why are we here? And the second question, a little more specifically: What can be done for caregivers to alleviate some of the burden on them?

Leon Kass: Yes. I'm going to have some help on the historical question. But I think in a certain way, this is a problem born of success. Fewer and fewer people die of acute illnesses. More and more of us die of chronic illnesses. And that figure on page 14, which draws on the RAN Study shows the three most common courses of illness leading towards death in this country. That covers about 80% of us. They're all chronic illness, cancer less chronic than chronic obstructive pulmonary or cardiac disease and certainly, less long lasting than this. It's very hard to dissect dwindling and much of it neurological, but multisystem. I mean the dream I think of medicine is to enable people to live out the natural life span with as little disability as possible.

Our Council colleague, Paul McHugh, likes Oliver Wendell Holmes’ image for the one-horse shay in which it finally goes "poof." But it hasn't worked out that way and what we managed to do as a result of caring forthe more immediate causes of death and being very, very good at rescuing people from the acute episodes, cardiopulmonary and other, is when we do finally get around to dying, it is by—it is only as a result of a protracted period of disability.

Some of the disabilities are being dealt with; hip replacement, knee replacement, other kinds of things do produce a certain healthier old age along with the relief of various diseases. But this is really the result of more and more people living longer and living longer to now suffer from these chronic diseases and disabilities for which we have as yet have no remedies. Some people who optimistically placed all their trust in research and research will be very, very useful. But that would be wishful thinking not to prepare ourselves for—even if there were a cure for Alzheimer's discovered in a decade, that still leaves a very large number of people for whom the disease is not reversible and who are on the caregivers’ doors.

The second major thing has to do with changes in fertility rates, and family size, and family structure, geographical mobility, women in the workforce and not working at home, a certain kind of decreased respect for mere caregiving in the culture, and a certain kind of illusion that these things are just not going to happen. It's astonishing to discover when—people are astonished to discover that other people are also in the midst of caring for one or two aging parents and that this is really ubiquitous, but we've just not collectively, as a society, noticed this phenomenon until fairly recently. Someone want to chime in on this historical thing?

Daniel Foster: Yes, Leon. This is Dan again. I just want to point out that the life expectancy was around 40 years at beginning the 1900’s and it's going up. One of the things that really we talked about this during the discussions and during our enhancements studies is the science of anti-aging, which is progressing extraordinarily rapidly. We now understand the genes, a number of the genes that maybe involved with the anti-aging process. Just this week in Science, a new gene from the report, this is called the Klotho gene, K-L-O-T-H-O, appears to have powerful anti-aging effects and it works through common genes that are present in humans. It's not something that’s just in a fruit fly or something of that sort.

So on the one hand, we've got this aging population, and on the other, we have a major component of science looking at the anti-aging effects and particularly, because oftentimes, we use experimental anti-aging procedures result in a healthy aging. In other words, if you prolonged the life of a rat by not feeding them enough calories, in the third year, they exercised better, then in the two years, the second year of their normal life expectancy. So that's another problem that conceivably may render this issue even greater in the future.

Mary Ann Glendon: Can I try to add another complication?

Leon Kass: This is Mary Ann Glendon.

Mary Ann Glendon: Yes. This is Mary Ann Glendon. Which is that, if we think about how we got into the situation and what the situation is, it's aluminating to think that 100 years ago, we had a very large dependent population that was largely composed of children and very few elderly for the reasons that have just been explained. Now, the situation is almost exactly reversed. The dependent population is predominantly elderly and getting more so all the time. And so one more problem to add to those arising out of this particular confluence of demographic trends is that, children and child raising families, because they are a diminishing proportion of the population, are likely to lose public attention. The poverty population is largely composed of women and children, but they don't have the visibility and the political cloud that the elderly population have.

Leon Kass: Claudia Kalb, could you repeat the second question, which we never got to?

C. Kalb: Sure. Thanks. I was interested in how to alleviate some of the burdens with the caregivers.

Leon Kass: Right. This is, as people who are close to the subject know, almost as big a problem as the problem of the care recipients themselves. Dr. Peter Rabins of Johns Hopkins spoke to the Council at the last meeting is the author of this really marvelous book, The 36-Hour Day, which sort of documents what that experience of caregiving is like.

There are token programs for respite care to provide financial resources and some kind of relief to ease the burdens somewhat. Many of the caregivers, especially the spouse caregivers, are of the same age as the people they are caring for, are not in good health and a toll in their own health often rises simply as a result of this kind of strain. And I think it's really, in a way, unreasonable to—it's unreasonable to expect the caregivers simply to try to go it alone, and partly it's an economic question. Partly, it's the lack of familial support. But there are places where faith-based communities and other small civic groups have begun to do community service using the elderly, in fact, to care for the less healthy elderly, to come in and be present. And we really haven't seriously attended to this enormous need.

If we believe as a nation, as we continue to believe that the main responsibility for the care of our aging parents belongs really to the family, and that still is the dominant American view, unlike other countries where they've already come to believe that it's the state's responsibility. Then even with the family is not in great shape and lots of people who have no children or are estranged from their children and who are going to need other kinds of caregivers. But even within the situation of family caregiving, unless we do something to provide them with communal resources, respite care, and some other kinds of social networks of support, they're not going to be able to hold out going down the road.

Look, if this figure is right, and it's on, I think, page 15 of the report in the footnote where we simply—just to the statistics. If it's true that even before the baby boomers come on line, 40% of the people die after only a prolonged period of frailty and dwindling. That means a married couple with four living parents, roughly half of them will be involved in the care of two of those four aging parents in this condition of dwindling up to a decade. And only one family in 40 is going to escape this problem altogether. The problem on the caregiving side is every bit as much, is every bit as great as the problem for the patients and it is one of the defects of this report, Claudia, and it was pointed out by Gail Hunt of the Alliance for Caregiving this morning, that we haven't—we've not really focused on the society's ethical obligations to the caregivers. But it is a topic deserving of much, much greater attention.

C. Kalb: Thank you.

Coordinator: Janet O'Keeffe, RTI.

J. O’Keeffe: Yes. Hello. I kind of was a little surprised that the down playing of living wills because I really think that if used properly and people are educated in their use, that they can actually be a great help because I have worked as a nurse. I have worked with terminal patients and when there is no living will and there's no guidance and people haven't talked about things, it's always much, much worse when they have, and that you can do a lot of educating certainly, for example, when people have dementia. When people, before they have dementia, you can ask them—if you have dementia and then you wind up developing diseases, cancer or whatever, do you want treatment and people can say, “Absolutely not. I certainly would not like want my life prolonged, I simply want to be made comfortable.” So I was kind of surprised that the down playing of that and I'd like you to maybe comment a little more on that.

Leon Kass: Okay. I'm going to let Rebecca also in on this, too. But let me say first, we are very strongly in favor of advance care planning and if the execution of the living will produces the kinds of conversations in which people make their wishes known, still remembering all of the caveats that Rebecca indicated as to how clearly people can actually understand the circumstances that they might find themselves in, but never mind. The occasion of having to execute such a document produces conversations that would be absolutely salutary and we discussed tha, and, in fact, talked about that as one of the strengths of this procedure.

But look, people are now obliged—the law now obliges hospitals to inform people when they come in of their right to draw up a living will than to write these documents. How much time is actually spent executing these sorts of things? Very often, five minutes with a lawyer and very often, without the kind of careful thought and it turns out all kinds if empirical studies show that you don't necessarily get better decision-making as a result. But Rebecca, why don't you pick up and go where you will with this.

Rebecca Dresser: I would say the main theme of this document about instruction advance directives is that, they can be useful, they can help families with the horrible guilt that they face in deciding the result—there is, excuse me, a long discussion of the virtues of these documents. But there is also a discussion of how they often fall short and they are, by far, not a panacea. And the national misperception of living wills as the way to handle end of life problems, particularly in dementia, results in a lack of attention to the real decisions that people face at the bedside.

So the reality is, most people with dementia don't make a directive even if they are educated. Those who do make a general one, that may be helpful at the bedside, but often doesn't clearly apply. And often, the clinicians and family at the bedside deal a different intuition about what would be best for the patient now, so they are torn and we take the position that it's not necessarily right to go with the previous uninformed choice. It might be right to go with the previous choice, but this procedure does not really begin to provide adequate guidance in most cases of decision-making for dementia. I'm not talking about cancer and advanced age and those sorts of things, but dementia.

Coordinator: I am showing no other questions at this time, sir.

Leon Kass: All right. If anybody has an epiphany in the next – while I'm winding up. Otherwise, let me thank you, one and all, for your interest and your attention. If you do, I would certainly urge you to read the report and the summary given here. Certainly, the summaries that I gave don't really begin to touch some of the subtleties in the discussion of these early individual cases or even as Rebecca just pointed out, the very nuanced way in which we do deal with the strengths, as well as the weaknesses of living wills and other forms of advanced directives. We hope you will read and think about the issues that we’ve raised. You are absolutely crucial to our efforts to educate the public about these kinds of important questions. And if you have questions down the road, feel free to be in touch with us. We look forward to seeing what if anything you do with this and make sure we see copies.

Thank you very much. Thanks to my dear colleagues for joining me this afternoon.

Rebecca Dresser: Thank you, Leon.

Mary Ann Glendon: Thank you.

Daniel Foster: Leon, Mary Ann and Rebecca, bye-bye.

Leon Kass: Bye-bye.

Mary Ann Glendon: Bye, everybody.

Leon Kass: So long.

Coordinator: This concludes today's conference. Thank you and have a good day. Bye.

September 29, 2005/12:15 p.m. CDT