Leon Kass, MD, chairman of the President's
on Bioethics, hosted a conference call with three
and reporters on Thursday, May 12, to discuss the
issued report, "Taking Care: Ethical Caregiving
in Our Aging Society."
"Taking Care": teleconference transcript
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
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
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
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
felt the need to address this subject just now and
why we thought this subject was appropriate for a
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.
Thank you. Kevin O'Reilly, American Medical News.
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.
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
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
Kevin O'Reilly: Okay. Thank you.
I am showing no other questions at this time, sir.
Give them a moment. Some of these people I know they
are not shy. Mr. Ferguson, are you there?
We have another question from Kevin O'Reilly of American
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
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
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
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.
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’
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
Mary Ann Glendon:
Can I try to add another complication?
This is Mary
Mary Ann Glendon:
Yes. This is Mary
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.
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.
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.
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
Thank you very much. Thanks to my dear colleagues for joining
me this afternoon.
Thank you, Leon.
Mary Ann Glendon:
and Rebecca, bye-bye.
Mary Ann Glendon:
Coordinator: This concludes today's conference. Thank you
and have a good day. Bye.
September 29, 2005/12:15 p.m. CDT