June 22, 2006
COUNCIL MEMBERS PRESENT
Edmund Pellegrino, M.D., Chairman
Floyd E. Bloom, M.D.
Scripps Research Institute
Benjamin S. Carson, Sr., M.D.
Johns Hopkins Medical Institutions
Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School
Michael S. Gazzaniga, Ph.D.
University of California, Santa Barbara
William B. Hurlbut, M.D.
Leon. R. Kass, M.D.
American Enterprise Institute
Peter A. Lawler, Ph.D.
Paul McHugh, M.D.
Johns Hopkins University School of Medicine
Gilbert C. Meilaender, Ph.D.
Janet D. Rowley, M.D., D.Sc.
University of Chicago
Diana J. Schaub, Ph.D.
Carl E. Schneider, J.D.
University of Michigan
WELCOME AND ANNOUNCEMENTS
CHAIRMAN PELLEGRINO: Good morning, this is one to
signal for those who are finishing their coffee that the time has come
to begin the meeting. We like to begin on time in deference to our
speakers, so they may address you fully. Good morning, if other
members of the Council will come in, we have a few more to go.
Good morning. Thank you, Alfonso, we're waiting for
you. Good morning, welcome to the 25th meeting of the
President's Council on Bioethics. My first official task which is
required each meeting is to note the presence of Dan Davis, Dr. Dan
Davis, the Executive Director of the Council. He's everybody's
boss, including mine and he is the official government representative
and, therefore, that gives the meeting its official status.
I want to welcome also a new council member, Dr. Carl
Schneider, Professor Schneider, who is Chauncey Stillman Professor for
Ethics, Morality and the Practice of Law at the University of
Michigan. In keeping with our custom, we do not go into long
introductions because the accomplishments of all those around the table
and the speakers far exceed any time we might have available to us in
one and a half days. So I hope they'll forgive me for this modesty
and it's no attempt to downgrade their accomplishments, I assure
I also want to introduce two members of our research staff who
have just joined the council, Sam Crowe, who is a policy analyst
and Alan Rubenstein, who is a research analyst. Would those gentlemen
just stand so members of the Council — oh, they're coming
in. They're coming in together. It's not the Marx Brothers.
They don't have enough hair.
I would like also to indicate to you that the Council has
seven interns for the summer who work with various members of the
research staff, and perhaps they will be kind enough just to stand
briefly so we can see you and thank you very, very much. These young
interns come from various universities around the country and we're
delighted to have them. We're also pleased to have with us a
medical student from Georgetown, Paul Hutchison, who has spent a few
hours with me in tutorial but I assure you he's still in good
health. Paul, thank you very much.
SESSION 1: ORGAN TRANSPLANTATION AND PROCUREMENT—THE EMPIRICAL CONTEXT
We have a very full agenda and we don't want to cut
into the speakers in any way. So that I think we'll jump right
into the middle of the play. Our first speaker is Dr. Laura Siminoff,
who is Professor of Bioethics, Oncology and Family Medicine at Case
Western Reserve University. Dr. Siminoff.
DR. SIMINOFF: Okay, I use a Macintosh computer so
let's see if I can figure this — oh, somebody will figure it out
for me. So while they're figuring that out for me, what I wanted
to do today, what I was asked to do, was to summarize the issues in
organ donation. And essentially what I want to do is summarize what we
really know, what we empirically know and what you need to know, I
think, about how this process unfolds and what are important in terms
of consent and decision-making so that you can consider what I think is
a very important issue.
So I was told to do that with not too many slides, and I
was told to do that with not too many numbers. So I hope that I can
succeed. I want to assure you that everything I talk about actually is
backed up with numbers. So I'm going to talk about the — about
three factors that really impinge on what people decide to do about
organ donation and then the other thing I would like to do just really
briefly, if I have time and I think I'll have time, is to talk a
little bit about minorities and organ donation, because it's a
really critical problem in this country and I think it deserves some
very special attention from you.
And the other thing I want to talk about very, very quickly
is policy issues that we've sort of tried in this country and just
give you a little idea about how the general public feels about those
policies. So just to give you an overview, as you all probably know,
most Americans, if you ask them in a public opinion poll, you know,
"What do you feel about organ donation, are you positive, are you
negative, are you for it," at least 85 percent will say that they
personally are willing to donate organs.
Now, unfortunately, the numbers of people who actually
sign donor cards is much smaller, around 40 percent, if that. And what
we do know is that most people who become donors are brain dead
deceased patients, and no more than 50 percent of those eligible to do
so actually become donors. So you can see at each step of the way, we
lose people. So the other thing we know is that certain segments of
the population are less enthusiastic about donation. African Americans
and other minorities report that they're less positive about organ
donation than the majority white community, but I want to emphasize
even though they are not as enthusiastic, still the majority of African
Americans, Hispanics and Asians report that they would donate their
So the component to obtaining consent to organ donation are
the following. People have prior attitudes, knowledge and behaviors
about donation. There are issues around what happens between hospitals
and organ procurement organizations, that's the initials OPO and
I'll always be saying OPO so you'll know what that means. And
that's an issue because we have to recognize donor eligible
patients in order to actually consent somebody to donate.
And then the other big issue is what happens during the
request process. So the first component that we need to look at are
prior attitudes, knowledge and behaviors. Remember, people have two
different levels of thinking about this. It's ahead of time, what
would I do, as an individual? Should I sign a donor card, shall I mark
it off on my driver's license, so in that respect I can signify
formally my wishes. And the other issue is, should I tell somebody
what my wishes are? Should I tell my husband, my wife, my children
what I want to do? And most people have feelings about this.
We know from doing many, many surveys that when you talk to
the American public about organ donation, they don't say,
"What is that." Most people know what it is, 95 — at least
95 percent have heard of it and most people have given it at least a
little bit of thought. So there are a number of sociodemographic
factors that are associated with donation attitudes. As I mentioned,
minorities actually donate at half the rates of whites. Women, who act
as surrogate decision makers and remember, even though we may designate
ourselves as a donor on a driver's license, most of the time
it's our family surrogates, our families who are making decisions
about whether or not we will actually donate. So that women who act as
surrogate decision makers for patients who are brain dead in hospitals,
donate more frequently than men when they're asked. The families
of younger patients donate at higher rates than the families of older
So we know that consent for pediatric donors is considerably higher
than that for adult donors and as the age of the potential donor
rises, the consent rate falls. And individuals who discuss donation
with their families are more likely to become donors. So looking
at these factors, what does the public really know about organ donation?
The interesting thing is that because most people are going to be
brain dead when they donate, one of the critical factors has been,
well, what do people understand about brain death. And one of the
things that we found out in doing a variety of surveys is that less
than half of the general public understands that patients are on
respirators when the organs are removed, therefore, most of the
public does not understand the process of organ donation. Most
people think they take the patient off of support when they obtain
organs and we know from research with families who actually donated
that this is also the case. Not just the general public, families
who actually donated also have these misconceptions.
Over a quarter of respondents believe that brain dead
people can hear, for example. And about half —and I think that
reflects the fact that about half of the general public believes that
people who are brain dead are not quite dead. So when we talk to
people what they say is, "Well, they're not really alive the
way I'm alive right now but they're really not quite dead,
they're somewhere in the middle." And many Americans are
concerned that organ donation results in the mutilation of the body.
And this is a particularly interesting and significant belief because
we are the only developed country in the western world that currently
practices open casket funerals by a majority of the public so this is
clearly a real concern for people.
Over a quarter of Americans believe that if doctors know
they're willing to donate organs, they wouldn't do as much to
save their lives. Three-quarters of Americans believe that rich and
famous people are more likely to obtain a transplant, and most
Americans believe, though, that patients will be correctly diagnosed as
dead when the time comes. So there's a certain amount of
mistrust. There's a bit of mistrust about, if I actually designate
myself on my driver's license as a donor, will they just look at me
and say, "Oh, they're a donor, let them die, we'll take
And minority communities in particular are very mistrustful
of this issue. And the other thing is that there's issues around a
belief in the equity of the system, so that three-quarters of
Americans, including when we do this with health care providers,
believe that if you're rich or if you're famous, you really are
more likely to be transplanted than you or I.
Now, in terms of people's prior behaviors about organ donation,
as I mentioned, we know that about 40 percent of Americans have
signed a donor card or signify that they're donors on their
driver's license. And about half of Americans have actually
their families that they want to donate and again, these particular
behaviors are very important. They're very important because
when people know that somebody is a donor, wants to be a donor,
they're far more likely to donate. In fact, we've passed
in this country a number across, I think about two-thirds of the
states, laws called first person consent in which those signifiers
on your drivers' licenses are binding. In other words, you
don't have to ask that family any more whether or not they would
be willing to donate.
And I think this is actually a good thing because one of
the things that — one of the reasons that we passed this legislation
is that people had a misperception that families countermanded
patients' wishes and this is actually an example of what had been
a successful policy being passed for the wrong reason. In point of
fact, very few families ever do that, but what they do do is they
really want to know what their family members want and when they
don't know, they tend to err on the side of caution, which is
non-donation rather than donation.
The second component which may be less interesting to you,
but I thought you should be aware of, is what happens between hospitals
and organ procurement organizations. This is a very important
component to organ donation because remember, people are brought into
the hospital, mostly — 99 percent of potential donors are located in
the intensive care unit. Somebody has to recognize that that patient
is potentially a donor and the current regulations stipulate that then
the OPO needs to be called by the hospital and the OPO needs to come
out and make an assessment and is responsible for making a request to
the families of the patient. So obviously, if the hospitals don't
do their part, there are no calls to the OPO. Therefore, there is no
So you can't ask family if nobody knows they're
eligible and what we've seen in our studies is that hospitals, at
least level 1 trauma centers where most of these donors are located,
are reasonably good at it and between 70 and 100 percent in our studies
actually will correctly identify potential donors. However, the next
step is that somebody needs to call the OPO on a timely basis.
It's not enough to call the OPO after the patient has been removed
from supports and that happens quite frequently, where they'll call
and say we have a potential donor, however, the family has left the
hospital. However, the family has already decided to remove the
patient from life support, or we already have, too.
So you may be at the letter of the law, because the law
doesn't stipulate, but you're certainly not complying with the
spirit of the law because if you don't refer in this way, again,
the family doesn't have the opportunity to consider this. Now, we
could consider this from a purely utilitarian thing, which is that, you
know, we want people to recognize donors because we have a utilitarian
purpose for it, but we could also consider it from a consent issue,
which is that this should be something that all families have an
opportunity and a right to consider. They have a right to refuse but
they should have a right to consider it if it's pertinent. So what
we've found is that timely referrals are even more variable than
identification and there are actually some hospitals that never refer
on a timely basis and some hospitals are very, very good and about 90
percent of the time they will refer on a timely basis.
Now, the last component, and in some ways what may be the
most important component, is what happens during the request process.
In other words, who asks the family, when do they ask, how do they ask,
how much time is asked and I group that under the rubric of what I call
effective communication and I've given you a definition of
effective communication which is truly essential for obtaining
consent. It entails discussing the option to donate with families in a
way that provides them with sufficient information to make an informed
decision within an environment that maximizes their ability to consider
the request. Requests can be persuasive but not coercive. And of
course, I'll leave you all to debate that issue. I'm not going
to do it myself.
So what happens during the process? Well, again, we're
looking at critically ill patients, patients who are terminally ill.
They're on complete life support. Their brains are either ceasing
to function or no longer functioning. So clearly, there's a lot of
things that have to happen and one of them is preparing the family for
the patient's inevitable death and also trying to make a donation
request while that all is occurring. What I want to talk about and
sort of point out to you is the things that can happen during that
process that make it more or less likely that families will donate.
Families are more likely to donate when they understand
that the patient's condition is hopeless. They're more likely
to donate when the possibility of donation is raised once the likely
terminal nature of the patient's condition is known, not after
they've declared the patient dead, brain dead, not after the family
has decided that they want to remove life support but before that, once
they know that the condition is futile.
Now, the interesting thing is that I believe the family
should all have a good explanation of brain death for them. However,
what you should know is that understanding brain death is not
associated with consent to donation. In fact, in our studies of
families who've considered requests for organ donation, what we
found was that more than half of those families really did not
understand the concept of brain death, didn't really understand
whether the patient's organs were taken before or after they had
technically died, and were more likely to donate when they said that
they were unclear when the patient had died. And I can discuss that
further, I see some people's knitted brows about this, but those
are the results.
And again, people make their own judgments about life and
death. They often don't use our medical concepts of death. We
often would hear families say things like, "I know that they said
they were dead at this time, but the minute I saw them in the hospital,
I knew they were gone." For them, that's when the patient
died. The other thing is that we talk about the use of relational
communication techniques to make those requests and these are the sort
of things that always should happen in healthcare settings with
families of patients, whereas you have to build rapport with the family
and the family's values and the patient's preferences
concerning organ donation have to be solicited and actively listened
Certain types of information are very important to actually
making an informed decision, and this list is from empirical data,
where we know that understanding these issues makes a difference as to
whether somebody donates or not. So for example, it's very
important for families to understand and know what can happen in terms
of the funeral arrangements for the patient if they donate. They want
to know and need to know how the body is treated. They need to know
what the benefits of donation are. It's hard to make decisions
about things if you don't know what are the good things that could
happen because you donated and there's often an assumption that
everybody knows this but it's not, there's an assumption that
people that know that there's only about 12, 15,000 individuals in
the United States that die, are brain dead every year. They don't
know that. A lot of people believe that if they don't donate,
well, the person in the bed next to them can donate and that's
simply not true. So we need to give people real information for them
to make a really informed decision. They need to know that if they
choose to donate but they don't want to donate certain organs, that
they have the right. The need to know what the monetary cost will be
for them if they donate.
The need to have reputation of certain myths about
donation, such as that the body is mutilated as a result of donation
and we need to actively solicit again, the patient's wishes and if
it's a first person consent state, to check the donor registry.
The time spent with the family is very important and families need a
lot of time to consider this request; hence, again, it's really
important to ask earlier rather than later and they need to have
emotional support provided. So we know that the more time you spend
with the family, the more likely they are to donate.
We know that OPO staff have superior consent rates as
compared to other health care providers and you need to be trained to
do this. It shouldn't just be anybody doing this. And they have
to be provided with a comfortable environment, again, providing them
time and emotional support. I thought you might be interested to see
why people decide to donate and why they don't donate. What we
found from real families who made these decisions is that for people
who donated, 78 percent donated because they felt that it would help
other people, 75 percent because the patient communicated a wish to
donate, 62 percent because they were just kind of generally
pro-donation, 32 percent because it would help them cope with the loss
of the patient and 22 percent because they felt the patient was gone
and they didn't need the organs anyway.
I want to point something out about this list, which is
that it's not a linear list. Everybody who donated had at least
two reasons, mostly three reasons for why they donated and actually,
although altruism beat out patient communication, a little, and I'm
not bringing the really complicated analysis we did on this, what you
should know is that the two reasons that were actually more important
than altruism was knowing the patient's wishes, again, acting as a
good surrogate and being generally pro-donation.
Now, why do people refuse? And here the interesting thing
is that many people actually had a single reason for not donating, and
they were much less complicated about why they didn't donate than
why they did. And again, this whole issue about being the good
surrogate, 51 percent didn't donate because they thought the
patient wouldn't have wanted to donate. Now, sometimes that's
because they had an explicit conversation. Other times, they were
casting back and just thinking about everything they knew about the
patient to come to that decision. Forty-four percent was something
that we call family stamina. The family just didn't have enough
emotional energy to go through the donation process. They had had
enough. They felt they had been through enough and they just
didn't want to go forward with it any more. And again, I think it
speaks to the issue of providing the family with a real environment
where they can actually do this.
Forty-three percent had disfigurement concerns, a quarter
mistrusted the health care system, 19 percent thought the patient was
ineligible. They were incorrect in that judgment, but they made that
judgment themselves and in 14 percent of cases there was disagreement
amongst family members. So technically there is a legal next of kin
that can make those decisions, but frequently these are family
decisions and most family members will not override other family
members, so if a son wants to donate but his other siblings do not, it
usually means that they don't donate.
The last — so those are essentially, I think the real
issues around organ donation. That's really a summary of what we
really know about why people do or don't donate and the components
that are important to donation. The last two things I wanted to talk
about were organ donation in minorities and policy issues.
As you probably all know, minority groups have a pressing
need for transplantable organs, particularly kidneys, and just to show
you a little poll data, probably the best data we have that compares
three different ethnic groups, we know that this one poll said that 87
percent of whites expressed support for organ donation, compared to 69
percent for African Americans and 75 percent for Hispanics. Donation
rates, as I mentioned, are half that of whites and minorities are also
less likely to have made a decision of organ donation for themselves
and they're less likely to have communicated that decision to a
family member. All those things mean that when we look at this, we
should see lower donor rates, and, indeed, we do.
Why doesn't the African American community donate, and
I'm going to concentrate on the African American community, because
it's the community we know the most about. They're the most
studied and it's also the community that has an incredible need for
kidney donation. Despite a lot of work, there is still a lack of
knowledge about the need for organs in the African American community.
There's also a mistrust of the health care system. When you look
at that quarter of people that say they mistrust the health care system
and they didn't donate or don't want to donate because of that,
if we look at those numbers for African Americans, it looks more like
40 percent for African Americans, and it's not just around
transplantation, it's around the health care system in general.
And then what we know is that African Americans experience
different donation requests than white families and I'll just go
into that a little more. What we know happens in the hospital with
African American versus white donors is that if you're African
American or a member of an ethnic minority, you are actually less
likely to be identified by the health care team as a technically
eligible donor. You are less likely to be asked as a family about
organ donation if you are an African American family and in another
study what we found was when we asked health care providers to assess
whether or not families were pro, wanted to donate, didn't want to
donate, or were undecided, they were markedly more likely to
misconstrue the intentions of African American families as not wanting
to donate even when they did want to donate. So, again, I think
there's a lot of stereotyping going on.
And then finally, I wanted just to talk a little bit about policy,
and of course, I don't have to tell all of you the procurement
system is voluntary and it relies on the public to give gifts to
a publicly regulated and funded system for organ donation and the
system has only sort of minimal oversight for tissue donation.
I think there's an assumption, is that we can all be asked to
donate for the public good and there's a community based organization,
those organ procurement organizations, that are responsible for
procurement. I think some of the issues that need to be considered
are that there are significant numbers of people who actually donate
in this country, who if they themselves needed an organ could not
receive one because of financial issues. So that we do have a system
that's publicly funded. We do want everybody to donate for
the common good but not — everybody can give but not everybody
Over the years, there's been all sorts of policy and legislative
approaches and usually I start most of my talks with noting the
number of people on the waiting list. There's currently about
93,000 people on the waiting list at UNOS. When I first started
working in this area in the 1980s, there were 25,000 people on the
waiting list, it was considered a crisis. As a result, we passed
required request laws that said that the hospital is responsible
to make sure that they asked all the families of donor eligible
patients. Those laws did not really result in the increase in donation
that we had hoped.
The next set of legislative responses was routine
notification which is our current system. It basically says that the
hospitals need to call the OPO who need to come in and request organ
donation. That has bumped up the rates of notification and
identification so that we've been able to get more organs but the
actual consent rates are still the same, they're about 50 percent.
There have been some hospitals that belong to something called the
collaborative that have done much better but still, overall the rates
are a little better but they're not great.
The next thing has been state initiatives for first person
consent where we have binding registries. Those registries are great
as long as when we request those, people are given complete options
about what they want to donate. So for example, in the state that I
live in, in Ohio, you just have a blanket check and a lot of people
don't realize that that includes tissues as well. A lot of people
never thought about that, so that could be a problem in registries.
There have been suggestions for mandated choice, that everybody
is required in this country to choose. They tried that in the State
of Texas. It didn't work very well. Everybody just opted out.
Presumed consent, which is a European system, which presumes that
everybody wants to donate unless they actively opt out. They tried
to pass that in Pennsylvania in the 1990s. That failed legislatively
and as I will show you, it doesn't have a lot of public support
and then financial incentives which the Institute of Medicine dealt
And just a last slide and I'm done, just to give you an
idea, most Americans do not favor presumed consent laws. The majority
of Americans are against those types of laws. They think they go
against people's sense of autonomy and again, there's fears and
mistrust about the health care system. The overwhelming majority of
Americans though did agree with first person consent laws so
they're comfortable with those laws as long as you can document
that somebody really does want to donate. Half of the Americans
believe that it's acceptable to provide donor families with money
for funeral expenses and many more African Americans than whites favor
such a policy, which is interesting.
And only a third of Americans don't favor any other
type of financial incentive. So in terms of financial incentives,
funeral benefits actually is an acceptable financial incentive for most
Americans. Anything else is not proven to be. And then lastly, less
than half of Americans believe that donors should be able to designate
a recipient. Most Americans are uncomfortable with that idea, that you
should be able to say, "Well, I want to give my relatives organs
to this person rather than this person or this type of person rather
than that type of person." So, thank you very much. I'm sure
you'll have some questions and I believe my time is up, thank you
CHAIRMAN PELLEGRINO: Thank you very much, Dr.
Siminoff for this fine overview of the socio, cultural and ethnic
dimensions of the process and the perspectives on organ donation. Next
we will hear from Dr. Neil Powe —
DR. POWE: Powe.
CHAIRMAN PELLEGRINO: Powe, thank you very much,
Professor of Medicine and Epidemiology and Director of the Welch Center
for Prevention, Epidemiology and Clinical Research, Johns Hopkins
University Bloomberg, School of Public Health. Following Dr.
Powe's presentation, we will open up the discussion.
DR. POWE: Well, I want to thank you for the
privilege to come before you today to talk about a subject that's
near and dear to my heart. I was asked to come to address the need for
organs, whether there actually, truly is a crisis in this country or
even in the world in relation to the need for organs. So that's
what I intend to do. I'm sure you've seen statistics like
this. And I am going to show some slides today. I cannot ever do a
presentation without data. I live in data every day, but I hope
it's not too — these statistics are not too troublesome.
This shows the number of people on the wait list. As Dr.
Siminoff has said, there's about 90,000 people now on the waiting
list but only 26,000 transplants and 14,000 donors in the country. And
you can see there's a widening gap over time. So what I'm
going to talk about is the growing prevalence of chronic disease.
I'm going to talk about kidney failure, an area that I've
worked in a lot and a little about heart failure; the prevalence and
incidents, the causal — something about the causal factors driving
this, treatment and prognosis, quality of life and cost, and show you
data by different transplants of the waiting list and then summarize
So chronic disease is a disease that lasts a long time. Chronic diseases
are unlikely to be cured in the near future. Progression can lead
to organ failure, that is what we often refer to as end stage disease.
And this is true in conditions like diabetes, hypertension, heart
disease and kidney disease. You can see there are about 58 million
total deaths in the world each year. And it's believed that
35 million people die from chronic disease. That's 60 percent
of all these deaths. And that chronic disease accounts for about
75 percent of health care spending and, in fact, that's due
to increase even more because of the older — the aging of
And some chronic diseases and their antecedents are
increasing, so you all know that obesity is increasing. Obesity, then,
is a determinant in the increase in diabetes and diabetes is a
principal cause of chronic kidney disease. So when many look at the
causes of chronic disease, they are multi-factorial. They include
underlying socio-economic, cultural and political and environmental
determinants, and then common modifiable risk factors such as health
behaviors, other healthy diets, physical activity, tobacco use, and the
non-modifiable risk factors, age and genetics. They also include
intermediate risk factors, such as blood pressure — rise in blood
pressure, blood glucose, abnormal blood lipids, and then overweight and
obesity as I mentioned and these are determinants in many of the
chronic diseases that we see today.
But we don't know what those — how those determinants
interact or even how to best intervene. This shows again, data on —
current data on the number of transplants and waiting lists. You can
see the kidneys are far the group that is one of the largest in terms
of transplants and in terms of the waiting list and then followed by
liver and then smaller numbers for pancreas, heart and lung.
So let me talk about kidney disease, an area that I've
worked in the last 15 to 20 years in my career at Johns Hopkins. And
there's a huge public health burden in chronic kidney disease.
There's over 400,000 people in this country are treated for end
stage renal disease and the cost of that treatment is about $50,000.00
per patient per year, an aggregate cost to the Medicare program of $17
billion a year. And you can see this graph that I've put together
for you that shows in 1972, our Congress decided to pay under the
Medicare program for patients to receive dialysis or transplantation
for end stage renal disease, probably the only disease in the history
of our country that was paid for particularly on a disease specific
basis and there were about 17,000 patients in the first year of the
program and that's now grown, as I said, to 400,000 patients. And
you can see this is a growing chart and the cost associated also
Well, this 400,000, this is a little old slide, it was
300,000 when I did this a couple years ago, is fuel. It's only the
tip of the iceberg because recently we've been able to show in the
population by one of my colleagues, Joe Korsch, that there's a
large number of patients who are in earlier stages of kidney diseases,
about 8 million individuals in this country who have what we call Stage
3 chronic kidney disease and this is marked by something that we call
glomerular filtration rate which we measure through blood
measurements. So this is something that we haven't seen yet and
probably what's fueling this 300 or 400,000 patients who have end
stage disease. And so when people try to project this out, this is
what we end up with. By 2010, it's thought that there will be
about 600,000 patients in this country. This has been a two-fold
increase of prevalence over just a decade and it continues to rise.
Well, what's the reason for this, well, the aging of the population
as I mentioned. Kidney disease is associated with age. The most
common cause of kidney disease is diabetes and we know diabetes
is fueled by obesity, another epidemic in our country. And as
Dr. Siminoff said, the racial characteristics of who gets these
diseases is also staggering. African Americans are about somewhere
between three to seven times more likely to develop chronic kidney
disease. What's less certain is whether there's been improved
survival of individuals treated by therapies like dialysis and transplantation
or whether, in fact, we're seeing people with kidney disease
because we're saving them from other diseases like heart disease,
cardiovascular disease treatment. Some of my colleagues and I have
tried to tease that out but it's very difficult. This shows
the epidemic in the minority community. African Americans have
a much higher incidence than whites and also Native Americans because
of high rates of diabetes in Native Americans. That's also
true that Hispanics have a large degree of ESRD.
Some of my colleagues and I, we've tried to explain why there
is this excess risk of chronic kidney disease in African Americans.
I think it offers some illustrations of the causal factors that
may be at play. This slide shows the relative risk of blacks versus
whites, greater than — Blacks are almost two to three times
more likely to develop end stage renal disease. What we control
— that's controlling for age and sex. If you control
for socio-economic status you can explain 12 percent of the excess
risk. If you control for lifestyle, about 23 percent of the excess
risk and if you control for the care they receive, medical care
they receive, about 32 percent of the excess risk. But all these
factors together, you can explain almost 50 percent of the excess
risk. That's good news because lifestyle and care quality we
can do something about but there's still 50 percent of the excess
risk that we don't have a clue as to why. And so more work
needs to be done to understand that.
Well, what is it like to have end stage renal disease?
These are some pictures. There's two ways to treat this. One is
dialysis and one is transplantation. If you get hematolysis, this is
what you get. You spend 12 hours of your week, four — three times a
week visiting a dialysis facility, tethered to a dialysis machine. You
can sit, watch TV, read but you're there for 12 hours for the rest
of — 12 hours a week for the rest of your life. Some patients choose
peritoneal dialysis where they — instead of getting their blood
filtered — the impurities filtered from their blood, they do it
through their abdomen and they do it at home on their own, and hooking
a bag of solution that goes into their abdomen and then we drain that
out by gravity.
Some patients do it at night using a machine that actually
cycles the fluid into the belly and out. I've studied a lot of the
quality of life and mortality of different types of dialysis and there
are differences but the main difference is that if you're lucky to
get a transplant, you're much more likely to live, 80 percent
survival over five years versus if you're on dialysis less than 50
percent of patients who undergo dialysis are alive in five years. So
really getting a transplant makes a difference. And the risk
is not — it's different over time. There's a higher risk of
death in the early stages of transplant. There's the risk of the
operation but over time, the risks of death go down.
What's quality of life like? Well, we've studied
chronic kidney disease in patients, asking them about their quality of
life. And it turns out on average, about 30 percent — on average,
they're willing to sacrifice 30 percent of their remaining life
expectancy for good health. So they're willing to trade off some
time for an improved quality of life, a significant amount of time.
They also had many other comorbid diseases and complications which go
with kidney disease, meaning they're hospitalized about two times
per year and they take on an average seven to 14 different medications
a day. This also shows what it is in expenditures comparing dialysis
to transplantation and actually transplantation here is cadaveric and
living related transplantation costs more in the early part due to the
operation but over time — this is the dialysis cost, about $50,000.00
per year, but over time, you can see that actually transplantation is
less expensive in the long run than dialysis.
And so this is — this epidemic of kidney disease is why we
have this disparity of people waiting on the waiting list, 60,000
patients waiting for a kidney and only 15,000 transplants being
available, most patients, as I said, being relegated to dialysis.
Let me say a little bit about heart failure. Heart failure
statistics are very hard to come by. Part of the reason is that
because Medicare has paid for kidney disease in this country, we have
very good statistics on who gets — who has the end stage disease.
It's not as true for heart failure, but this is what people have
been able to glean and put together. There's about five million
people with heart failure in the country. That's heart failure of
any severity, about a half a million people who develop it each year,
57,000 patients who die each year. It accounts for about a million
hospital discharges. In fact, it's the number one reason in the
Medicare population for hospital discharges at a cost of about $30
billion to our country.
The prevalence of heart failure varies by age, about 10
percent in those over age 70 compared to two percent if you're less
than age 60. And the determinants of heart failure are largely those
who have ischemic heart disease or coronary heart disease, accounting
for about 70 percent of cases of heart failure. In fact, most people
believe what fuels this is that we've developed very good
therapies, kind of half-way technologies for treating heart disease,
revascularization therapy, whether that's thrombolytic therapy,
clot busting drugs, or coronary artery bypass graft surgery or stents,
that actually save people's lives but they actually leave the heart
muscle still damaged and so that leads then to progressive heart
failure. And because of that, we can keep people alive but patients
are going to go on to develop heart failure. In fact, we see deaths
from heart failure increase over the last few decades.
The prognosis for heart failure can be poor. It's a
progressive disease. Yearly survival depends on what class of heart
failure, kind of stages of heart failure that we use. If you're in
a mild class, it's — the yearly survival is about 85 to 90
percent, but it goes down to 50 to 70 percent if you're a Class 4
and this is about a quarter of patients. Those patients that have
refractory symptoms at rest meaning they're short of breath at
rest, they would be candidates most likely for transplant, have a 50
percent survival of just six months. So their survival is really
poor. And as I mentioned, it's the number one reason for hospital
admissions in the Medicare program.
How do we treat heart failure? We can treat through
medications, a lot of emphasis in the last few years on disease
management, education, case management, prevention efforts, exercise
training and then our technology. Implantable defibrilators are now,
biventricular pacing is shown to give hearts a boost in their pump
function. And then mechanical support devices mostly now used as a
bridge to transplantation but not in and of themselves long-term
therapy. And then transplantation, which has been really reserved for
less than five percent of those with advanced heart failure get
transplantation but I expect this actually will grow.
This is what the heart waiting list looks like. We're
seeing a little decline in the waiting list, probably because we're
getting a little bit better at the eligibility characteristics for
those who are eligible for transplantation. Patients with heart
failure at least Class 4 heart failure, have a miserable life. If you
ask that same question I said to dialysis patients, those with end
stage renal disease, the Class 4 heart failure patients are willing to
sacrifice about 70 percent of their remaining life expectancy to have
perfect health, trade that amount of time off.
So back to this slide, this 90,000 people on the waiting list,
I think it's real. I think there is a crisis of chronic disease
an end stage disease in this country fueled by a variety of factors
that we don't understand and they're increasing. We, as
well as others, are trying to understand why this is. I think preventive
efforts are extremely important but they're unlikely to immediately
address the loss of life and suffering by several hundred thousands
of persons each year and as Dr. Siminoff said, the problem is particularly
important for some disadvantaged groups in this country.
So I think this is real, I think it is a crisis and I think
we need to do something about it.
CHAIRMAN PELLEGRINO: Thank you very much, Dr. Powe, for your
very, very concise summarization of the very critical clinical data
that must figure in any consideration of an organ donation program
as well as the data we heard from Dr. Siminoff. I'm going to
ask one of the members of our Council, Dr. Daniel Foster, to open
the discussion of both these papers and then all the rest of the
council members, we hope will contribute their observations and
questions. Dr. Foster.
DR. FOSTER: Well, I'm sure I speak for the
Council in appreciation for both presentations. Let me begin with the
first presentation to ask a question in what might be called a reality
response to the summary of all the things that lead to and lead away
from donations and that question has to do with the issue of time.
Almost everything that you said focused in terms of preparation for
time, we have to start early if we think that there might be an illness
that would lead to a donor. We have to spend much time with the family
at the time of the event and one of the absolute realties that all
physicians deal with now is the lack of time because of payments and
all sorts of things that — follow-up visits in the office which might
have been 15 minutes are now five minutes. It's standard
for a new patient work-up in internal medicine which for years was an
hour is down to 30 minutes or 15 minutes or less. So hovering over
everything that you have talked about is the pressure of time. Most
physicians, even really caring physicians, are not going to be able to
spend an hour or two hours with a family regarding donation. I mean,
it might take — I'm actually involved in one myself right now.
There's just not time to go over all of these issues, to talk to
the siblings, to do all of those things.
Another matter of time is that many of the deaths come
quickly, if it's trauma, you're riding a motorcycle without a
helmet and so forth, and so there's a time element which is
involved there. And finally, there is the issue that most of the time
the trust is involved if there is an ongoing relationship with the
physician, for the physician to be there, but in most hospitals, death,
even — certainly random deaths come with the physician of record not
being there at all, so it's going to be a resident or something of
So I think that what I'd like to open the discussion
with is your response to how do you think that we're going to have
time and resources to do all these things, not to mention the proposals
which we'll talk about later, the IOM report and so forth, for
starting education very early in life and so forth. I wonder if you
would just comment on that reality factor.
DR. SIMINOFF: Yeah, and I agree with you and I
think one of the reasons in our studies physicians have the worst
consent rates of any health care professional is because they do not
have the time to sit with the family and do what really needs to be
done. Required request laws failed because they gave that
responsibility essentially to the hospitals and to the physicians to
do. The current regulations, however, don't really stipulate that
the physicians or even the hospital staff have to have that
Currently, what is supposed to happen is that somebody from
the hospital needs to tell the organ procurement organization that
there is a potential donor. It then becomes the responsibility of the
OPO to do that, to spend the time with the family. So really what
really needs to happen and the most successful hospitals, the most
successful models of this are when the health care providers call
early, the organ procurement organization staff that's trained to
do this comes early. The health care providers are then responsible
for making the introduction. They do not have to stay for the entire
thing, In fact, mostly they do not and then they leave and the OPO
staff are then the people that will spend the hour, the two hours,
sometimes the 12 hours with this family. Otherwise, you're
absolutely correct, there's no way physicians could do this, and
they weren't doing it and they weren't able to do it.
And so now really, what I think needs to happen in
hospitals and particularly for a lot of intensivists who care for their
patients, they really need to start becoming comfortable with doing
this, with saying, "We really can't do this, it's just
impossible for us. We need to give this responsibility to somebody
else understanding that we have hopefully a good relationship with
these people," and that was sort of the second element of
developing that relationship of trust between the hospital and the OPO
and then feeling that when I introduce this staff — this OPO staff
person to the family, I can feel confident that they will treat this
family with respect and with sensitivity and that they will do a good
job. So that is really where things are going and I think need to go
given the constraints.
And again, when you mentioned sometimes things happen very
quickly medically with these patients, again, that's the other
reason why it's very important for the OPO to be called quickly.
Now, there are some different models. For example, in some very, very
large level 1 hospitals they've put in what they call in-hospital
coordinators. These are people from the OPO and their job is to be in
that hospital 24/7 and that's what they do. So basically, the OPO
always has somebody on call at that hospital.
Now, as a model, that works very well in extremely busy
trauma centers. It's not a financially feasible thing to do in
level 1 trauma centers that have maybe some donors a year but not on a
regular basis, then we're back to the calling early thing.
DR. FOSTER: Well, the teaching hospital that I work
in, in Dallas takes care of the poor and largely minorities and so —
and the people that — the OPO people that come are actually very good
and so forth. Nevertheless, often times if it's a patient
that's under the physician's care, they in responding to that
kind still say, "I want to talk to my doctor, you know, to do
that." So that it's pretty hard to eliminate that. Also, I
didn't mention the fact that, of course, in most major hospitals
now, hospitalists are there and many of the internists and, you know,
family practitioner has turned it over to a strange doctor who is
there, which makes it a difficult thing. But I think your answer is
probably the best way we can go as to have that sort of training and to
— and big trauma centers, which we are, to have a full time group
which would be present. So I think that's something we're
really going to have to think about and the cost.
I don't want to dominate things, but I want to ask Dr.
Powe one question about his presentation then we'll throw it open.
The issue of the increasing number of patients with end stage renal
disease and as you point out, almost all of them do die of heart
disease, they've all got endothelial dysfunction. I mean,
we're going to have to figure out what's going on with that.
The estimates of how many physicians one needs in the country vary.
You know, we go through these cycles, well, we have too many physicians
and therefore, we have to stop training programs and now the estimate
is, well, there's going to be a great shortage of physicians. Our
own State of Texas has mandated that the medical school increase their
entering classes much to my distress, 20 percent to increase the
residencies and so forth, just to increase the doctors in Texas.
We're coming to a time where the nephrologists are
reaching retirement age, the people who have gone — you know, when you
first started this specialty and so forth, and so there is also, I
believe, a considerable concern about having enough nephrologists to
deal with this massive increase in renal failure, which, like you, I
think will continue to increase. I wonder if you would comment about,
not the need of an organ which we're going to discuss, but the need
for somebody to care for all these persons who live longer and
they're more sick and go into the hospitals much more frequently if
they're on dialysis than those who have had a transplant.
DR. POWE: I think actually, it's not really the
patients who have end stage disease. I believe actually the numbers —
there have been, actually a person power estimates or workforce
estimates for nephrologists but I'm a primary care physician, a
general internist, and it's true that there probably are enough
nephrologists in the projections to take care of patients with end
stage disease. The problem comes more of those 8 million that are
under the iceberg. And if all those were to land in nephrologists'
office, nephrologists would be overwhelmed so they couldn't take
care of the sicker patients.
And so I've actually been doing a lot of work in
educating primary care physicians about patients with less degree of
renal function in managing where now we are beginning to have drug
therapy that can slow the progression of disease, can't eliminate
it but slow the progression, things like ACE inhibitors and ARBs when
patients are properly chosen for those therapies. So that's where
I think the workforce issues are and probably even more acute for
primary care physicians since less people are going into primary care
at this time.
DR. FOSTER: Well, just personal experience, I
don't have national data on this but at least in Dallas we often
times are having to keep patients in the hospital on dialysis because
there's no slot for chronic dialysis and if you're a
nephrologist in Dallas, I mean, every group is looking for additional
people and having some difficultly in finding them. Maybe they
don't want to live in Dallas. After all the Mavericks lost, but I
mean, I do think that there may be even apart from the internists and
family practitioners who take care of the earlier stages, that this may
be a potentially difficult problem because I don't believe that the
renal — I could be wrong about this and maybe Dr. Hippen will want to
talk about that, but I don't believe that the number of slots for
nephrology training programs are actually increasing and it seems to me
that that might be a problem.
DR. POWE: They're maintaining but then it's
what nephrologists do. If they were to shift more to taking care of
the end stage patients more and that was their major role versus the
earlier patients, so I think that's the issue of where they work.
I don't want to give the impression — the availability of dialysis
is wonderful today. Most of the units in 1990 were in-patient units
but by the end of the early 1990s most of the units are outpatient. So
most of the units are not even affiliated with hospitals but
free-standing dialysis units in the community and they have doubled to
tripled over the last couple of decades so the availability of dialysis
treatment is very good in community centers, often started by now
for-profit dialysis facilities. It's become a for-profit business
in this country. About 80 percent of patients are taken care of
for-profit facilities, so the capital to build dialysis buildings and
facilities has been there through this for-profit market.
CHAIRMAN PELLEGRINO: Other questions, comments?
PROF. SCHAUB: Yeah, I have a question for Dr.
Siminoff. Has there been a generational shift in the willingness to
donate? I mean, are young people more likely to check the driver's
license box than older generations?
DR. SIMINOFF: I don't think we have good data
on that, so I really can't answer your question definitively. What
I do know is that when we speak to potential donor families, that as I
said, the families of younger patients do tend to donate more
frequently. And those family members tend to be younger. They are
usually making decisions about young adults or pediatric patients.
They, themselves, are younger and they do tend to have more positive
views and they've heard about it and they discussed it in school.
So my guess would be if somebody actually did the study and looked at
the data, that there is somewhat of a generational shift in this and
there has been a consistent rise so that about 20 years ago, I
don't think any more than 20 percent of the population had checked
something off on their license and that number has doubled. So there
definitely has been an educational shift in the country as people
become increasingly aware about this issue.
PROFESSOR SCHAUB: Do families themselves ever
initiate the process? You mentioned sometimes —
SIMINOFF: Absolutely they do.
PROFESSOR SCHAUB: — in hospitals —
DR. SIMINOFF: About a quarter of donor families
actually initiate it themselves.
CHAIRMAN PELLEGRINO: Dr. Rowley?
DR. ROWLEY: I have two questions for Dr. Siminoff.
The first question has to do with that data that we got that I think is
not from you that indicated that individuals over 65 are now donating
organs where they didn't used to or another way of putting that is
that transplant services are realizing that older donors may be of
value. The question is, is there any data available on say the
survival of individuals transplanted with organs taken from older
individuals as compared with younger.
And so the question — there are two questions, one of
which is related to the enormous increase, more than three times, in
the period for which we were given data in use of older individuals as
donors and the second is the viability of organs taken from older
DR. SIMINOFF: I'm going to somewhat answer your
question and then I may punt to Dr. Powe about the medical aspects.
What you're talking about is the expanded donor criteria. And so
that is not so much a consent issue as it just is a willingness on the
part of transplant surgeons now to accept donations from people who are
older. And the interesting thing, I think I showed you is that about
19 percent of families deny donation because they don't believe
that their relative was eligible. Those tend to be the families of
these older donors who, when you talked to them say, "I know they
asked me but they were mistaken. They don't understand, you know,
my dad was a smoker or my uncle drank a lot and nobody would really
want their organs, they're too old."
So we do need to educate the public at this point that
donors are not simply 20-year old men who ride motorcycles without a
helmet like in Pittsburgh. They are many, many other people. I
believe that those organs are viable although I'm not sure they do
as well and I think there's been discussion about whether we really
should be talking about if we are going to be taking organs from this
expanded donor pool, would it be better to preferentially transplant
those organs into older recipients, but maybe Dr. Powe has some
thoughts about that.
DR. POWE: Yeah, there's been a lot of work on
what we call marginal donors or expanded criteria donors. Some of
those are donors that have high blood pressure, that have been obese,
that might actually even for themselves, if they give a kidney, have to
worry about their own health in the future, and then whether the
actual, you know, kidney will survive. So the premise with this is
that, yeah, with older age a kidney, renal function does deteriorate
over time so one, in fact, would think that a kidney from an older
recipient may on average not do better than someone from a younger
recipient. That's probably true. But because we look at the
kidney function, you know, and look at eligibility, you know, not every
older person is the same in terms of the disease that they have, so
that has to be looked at and that's what surgeons do and transplant
nephrologists do when the select someone for an organ.
The other thing is that this is a moving target because
immuno-suppressive therapy has gotten so much better over the last
decade that, in fact, the rejection of organs has gone down and
we're getting better and better at that. So we're extending
the life of organs at the same time.
CHAIRMAN PELLEGRINO: Dr. Kass.
DR. KASS: Thank you. This is a question for Dr.
Powe. And it goes to your sort of projections of what's in store
for us even as early as 2010 in terms of the growing number of people
with end stage renal disease and presumably, the growing, therefore,
number of people on the waiting list unless there is some kind of
radical solution to the so-called transplant shortage. It seems to me
that if these numbers are right, we are, in fact, facing this
shortfall, the shortfall that we face now is nothing compared to what
we are likely to see going forward.
And that raises for me
the question of whether it's right to begin to think of this in
terms of a crisis even now, because a crisis calls for really sort of
major and heroic kinds of interventions. Thirty percent AIDS incidents
in the male population in sub-Saharan Africa, that's a crisis for a
community. The fact that the mortality rate in the United States is
exactly 100 percent is not a crisis. All of us are going to die of
something and I notice from the figures that we were given that on the
waiting list already, 60 percent of the people on the waiting list for
all organs are over age 50 and 14 percent of them are over age 65. A
sixth of the people on the waiting list for kidneys are 65 and older.
If we manage some of these other symptoms, lots more old
people are going to be transplant eligible as the only way to avoid a
demise. So I guess I would invite you to tell me why you think this is
a crisis and a crisis for whom. It's sad, I don't deny that,
but if we start talking about this in terms of a crisis and going
forward, nothing short of some kind of radical measures would somehow
meet that kind of need. And I wondered if — that was a bit
long-winded, I'm sorry, but I would like to sort of like to invite
your reflections, especially thinking ahead.
DR. POWE: Right. Well, this is a philosophical
issue. And, you know, as to — you know, when you speak to should all
— should those who are older be in the waiting list, have they lived
long enough? And I don't think our society has grappled with that
very well and is willing to refuse treatment especially for older
individuals that have the means to pay for that therapy. So I'm
not sure I can answer that question. This is a big issue for our
society. Other societies aren't in the position around the world
where they can offer marvelous and wonderful treatments to individuals
that we can in this country and so we're faced with this dilemma.
I mean, it used to be that in the advanced stage renal
disease industry people in Canada and the United Kingdom, if you were
over age 65, forget about getting dialysis, but now that's opened
up in other countries, too. Other countries are going to face this
issue in the future, too. I don't know how to solve it. It's
a rationing issue and an issue about how we deliver health care
politically, financially and philosophically.
CHAIRMAN PELLEGRINO: A small one.
DR. KASS: No, I appreciate the drift of the
conversation but one thing that is in your power is whether or not to
call this a crisis and since you used the term, I'd like to hear
you tell me why you want to call this a crisis especially if we
ain't seen nothing yet.
DR. POWE: I think it is a crisis. When I see, you know, organs
being sold over the Internet on E-bay, people desperate to get an
organ. Individuals that I know who have end stage renal disease
will do anything to get a transplant from their own family members,
too. That's something we really didn't talk about. I think
Dr. Siminoff's presentation was focused a lot on the cadaveric
group but also the living — related living, unrelated. At
Hopkins we're doing a lot of issues around people, if they're
not compatible swapping organs with others even if they're unrelated
to each other. These are the kind of things that are going on
today because the pressures of individuals who are — and more
individuals that are in this circumstance vying for this scarce
organ. So I think it is going to be a crisis.
It also depends on where you stand. You know, if you have
a family member that's effected by this or you're effected by
it, it is a crisis, there's no question about it. And the more of
us that are effected by it, I think the more it will be a crisis.
CHAIRMAN PELLEGRINO: Dr. Lawler? You're on the
list, Bill, I'm sorry. We have to remind you all that we have six
more to speak and we have a limited time. Peter?
PROFESSOR LAWLER: Let me get the elementary medical
facts down right. In this country we have millions and millions of
people who have kidney disease. Kidney disease is progressive. It
can't be stopped. It can be slowed down some basically through
blood pressure medications, but maybe not all that much in many cases.
So as we improve medical treatment, fend off heart disease and other
complications, more and more people are just going to live through this
thing and progress to end state or renal failure, right?
So this is the character of the time bomb that this is a
disease that many, many people have. As medical technology improves,
more and more people are just going to see it all the way through.
That is they're not going to die in the process, they're going
to die in the end of it, and is that really the nature of the crisis?
DR. POWE: Well, that's part of it. We really
don't actually understand that. And I tried to elude to that, part
of this is — in kidney disease is driven by the aging and we know that
age is associated with kidney disease. The number one cause, 50
percent of the cases of kidney disease, over 50 percent are due to
diabetes, okay. And we know there's an epidemic of obesity. So if
we could do something about the epidemic of obesity, we might, then
slow down diabetes, the whole pathway, but that's going to take
years. It's going to take years and I don't think we know how
to do that.
And then this other issue of technologies that we save
people's lives has been less proven although it certainly is a
plausible, you know, hypothesis. I actually believe that as we extend
life that's what we're going to be doing but the evidence for
it is not ironclad compared to where our efforts should be in terms of
other prevention efforts, for example.
CHAIRMAN PELLEGRINO: Dr. Meilaender?
PROFESSOR MEILAENDER: I have a question for each of
you. For Professor Siminoff, I just wondered with respect to these
first person request laws, you know, as it were a mandate that a
person's consent is simply overriding, I go into my license bureau
to renew my driver's license and they ask me, you know, what color
my hair is and I say, well, you know, (laughter) and they say, "Do
you want to be an organ donor," and I say, "Yes." In
what sense does that constitute consent? That's my question for
For Dr. Powe, this may not be an answerable question, if
you want to just tell me that, that's okay, because —
DR. POWE: I'm used to those.
PROFESSOR MEILAENDER: — you deal with — you think
about sort of data we have about what has happened. But I just found
myself wondering, I don't know if there's any way for you to
think aloud about this question, if in 1972 Congress had not decided to
fund dialysis, what would our situation look like today? I'd just
like to hear you think about that if you're willing.
DR. SIMINOFF: I'll answer the simpler question
first. I agree with you that in terms of we — and again, I live in
the State of Ohio. I took my son to get his driver's permit and I
watched what went on and I was appalled. Now, he's thought about
this issue for years because of me but he's a somewhat unusual
16-year old. The real problem is, is that the driver's bureau is
not a very good place to make these decisions.
Presumably for most people they will have thought about
this and had other information. There certainly are pamphlets that are
given to people, whatever. That's why I eluded to the fact that we
need to make sure that we have registries that are; A, accessible to
people so that if they change their mind, they can easily do that, that
we have good, at least educational literature that gets handed out and
that people are able to see all the different things that they could
donate and are forced to tick them off one by one. That will make
people really think about what they're doing, you know.
And there are states that do this; they say organs, and they list,
hearts, livers, kidney, so you're forced to say to yourself,
"Do I want to donate my heart, do I want to donate my kidney,"
and then it lists all the tissue. That's why, for example,
it's not very good because it's just a very blanket sort
of thing. So I agree, I believe that most people need to give it
more thought than they would normally get in the bureau. I think
the presumption has been is that people have thought about it beforehand,
that this isn't really where they're consenting, per se. It's
where they're just designating their wishes from a prior thought
And there are many people that choose not to do this,
obviously. They either haven't thought about it so they're
uncomfortable checking, or they're uncomfortable checking it and
they really prefer to sort of say to their family, "If something
happens to me, I would like to donate so now you know." And
I'll let Dr. Powe project the future.
DR. POWE: Well, there actually is some evidence on
the issue. There was a researcher, Roger Evans, who did an interesting
study in the late 1970s and early 1980s and what he did is he looked at
the demographics of individuals who received dialysis for end stage
renal disease before the passage of the Medicare program and after the
passage of the Medicare program about five years later.
And what he found is that before passage, older
individuals, those that are unmarried, separated, or divorced, lower
income and minorities were much less likely to receive dialysis care or
transplantation. And then five years after the passage of the program,
the demographics, those disparities had actually decreased as a result
of the offering of health insurance. You could say this is much the
dilemma like the issue of the uninsured in this country today, but at
least from an equity issue, if that's important to you, that study
would probably tell us what the demographics would look like of
individuals if we had not had passage of it who would receive dialysis
CHAIRMAN PELLEGRINO: Dr. Carson.
DR. CARSON: Thank you both for that very
provocative presentation and Neil, it's good to see you here. I
have several questions but in the interest of time, will limit myself
to one. Dr. Siminoff talked a little bit about something that seems
counter-intuitive and that is that the more information families had
about brain death, the less likely they were to donate. Have you found
that, in fact, where the primary decision maker is a physician, that
the number of donations tends to decrease?
DR. SIMINOFF: When you say, you mean people who are
in health care who have to make those decisions? We've never had
enough data to really — to look at people in that way and divide it
out. It's not necessarily whether people had more or less
information. A lot of those people had the same amount of
information. It was what they took away from that information. So
there were lots of people who just, despite the fact that they had
these discussions about brain death and what it was and they saw
things, you know, x-rays of blood flow and this and that, it just
didn't mean anything to them. They just didn't understand it.
And they may not have understood it because it's
complicated, and a lot of physicians don't understand it. So it
may be that they didn't understand it because they were very
stressed at the time and it was just too much for them to take in.
What seemed to really be important to people was that they understood
not the technical issues of brain death, but they understood that it
was hopeless for this person and this person would never recover. That
was the bottom line, for people whether they understood that, you know,
brain death or not.
Now, it was an interesting finding that when you didn't
really understand brain death and you didn't really know the moment
of death, you were somewhat more likely to donate. And that may have
been a result of the fact that that was just not an important issue for
people. And we actually did a very interesting study which we
published that showed that when we asked the general public about 1300
people what they understood about brain death, they didn't
understand a lot and then when we gave them various scenarios ranging
from people who are classically brain dead, people who are in a —
they're neurologically impaired and they're on life support,
but they're not going to ever be brain dead and then people who are
in persistent vegetative state, at least a third of the public is
willing to donate for people that they know are not technically dead
and that was a very, very interesting finding because in reality there
is a significant number of people that don't care about these
medical definitions. They have personal definitions of personhood and
the soul and a lot of other things that go into it, and so the
medical/technical stuff is just irrelevant for them. So that's the
best answer I can give you.
DR. CARSON: Okay, thank you.
DR. POWE: I know of one study, it's not quite
related, of an individual, I forget his name, who did a study, did a
study of focus groups of physicians about organ donation. He was
interested in disparities, yeah, but what he found is that many of the
physicians and health care professionals had some of the same beliefs,
surprisingly, that the general public did. Now, I don't think he
asked specifically about brain death but it was surprising that they
held some of the views that the general public even though they were
more knowledgeable, you know, about health.
DR. CARSON: And maybe that's the reason that
physicians have such poor procurement rates.
DR. SIMINOFF: That may be.
CHAIRMAN PELLEGRINO: Thank you very much, Dr.
Carson, for your sensitivity of the time constraints under which we
operate. We have now gotten to the point where I think we have to do
some limitations. We have one, two, three, four speakers on the
council who would wish to comment. May I suggest the following; if you
would put forth your questions and ask the respondents to hold off
until you're finished and then you take one or two of those.
We're not going to be able to cover all of them, otherwise we will
cut into the next session after the break.
So if you'll allow me to make an executive decision, I
will do so. We won't have a discussion about it, we will do it
that way. So let us have in order, Dr. Bloom, Dr. Hurlbut, Dr.
Gazzaniga and Dr. McHugh and then you folks respond as you see fit but
brevity is the soul of wit.
DR. BLOOM: I will just make a comment and not ask for a response
because you've spoken to it in partiality but the bottom of
your iceberg concerns me more than the tip that we see. And it
seems to me that the bigger ethical issue for the Council at some
point to consider is when do we begin to campaign for preventive
medicine and self-responsibility in health and avoid to the degree
we can, crises in the future?
CHAIRMAN PELLEGRINO: Thank you, Dr. Bloom. Dr.
DR. HURLBUT: Well, actually, I'd like to return to the question
that Leon raised about the crisis and, perhaps we can do that in
later discussions. But it does strike me, looking at the statistics
that it's interesting the particularly the live donations that
they come primarily from people under the age of 50 and yet there
are — the crisis seems to be largely people over 50. And
I just intuitively feel there's something a little worrisome
in that relationship, that the young are being asked to donate to
sustain the elderly population. And being over 50 myself, I —
you know, I feel the weight of it but still something strikes me
But I do want to make one comment, and that is since your
statistic said that only 40 percent of people actually have indicated a
willingness to donate, it seems to me there's a place where you
really could make a difference and just a thought, in California we
have driving school. If you get an infraction, you can either pay a
fine or go to driving school. That might provide an opportunity for a
much more comprehensive and sensitive discussion and reflection.
Driving school goes on for something like eight hours and they could
prepare a very well documented case for donation and give people an
opportunity to reflect on both the need for donations and also how the
fact that they're in the driving school indicates that they have
not been driving carefully and that if they reflect on the fact that
they may someday too be disaggregated to save somebody's life, they
may drive more carefully as well as donate more frequently.
CHAIRMAN PELLEGRINO: Dr. Gazzaniga?
DR. GAZZANIGA: I would like to represent the over
65 pro-life group (laughter). One man's crisis is another
man's statistic. Since we have you here, and since you represent
the side of medicine that seems to be seeking increased organs for use,
what I did miss was your specific, if you have, specific
recommendations for how that might come about and then tied to that
question is, do you find various OP organizations at odds sometimes
with UNOS and other organizations that have adopted a different public
view of the nature of this situation?
CHAIRMAN PELLEGRINO: Dr. McHugh.
PROFESSOR McHUGH: I was very interested in what
both of you had to say from the data and I'm very appreciative of
it, but I missed something in your understanding of the problem, not
just this issue of the crisis but it's a very similar issue that we
used to face when people really cared about autopsy rates. When I was
an intern and a resident, if you didn't get an autopsy the chief of
the service was extremely cross with you and he presumed an important
thing, namely that you didn't care enough about that family to win
them over to understand the anonymous benefits that were going to come
from the autopsy were, in fact, part of the relationship that you had
with that family and worked with that family to have them understand.
It wasn't simply a matter of information, in other
words. It was a matter of relationship. And a lot of things that
you're saying today about this issue being a crisis, but also the
idea that there are people out there that are buying and selling these
matters, show me, anyway, that there are problems in recognizing the
personhood that's going on here rather than simply the machinery
that could be replaced like you replace a transmission.
You said for example, somebody said here that nephrologists
don't work with end stage renal disease, so the best people, the
people most interested in this condition of renal disorders aren't
working with the serious patients who could be their best advocates
because they knew them, not just that they knew their kidneys. And
that likewise we also say that the doctors are so busy now that they
can't stop long enough with the persons in the families to give
them — so we bring in these advocates for organ procurement.
I don't think that unless there is an understanding
that you're grappling with matters of personshood, and personhood
here, both from the giver and the receiver, that you're going to do
much better than you already have done. At this rate, I would have
thought it's probably what you're going to get for kidneys and
probably the best you're going to get with livers, until you stop
looking at this in machinery ways, appreciate that the distrust of the
health system has certain coherent reasons for it, people have lots of
reasons for seeing the depersonalizations that are going on in there,
and I don't think that's so much a philosophical matter as a
matter of the system itself and the way we're thinking about these
matters like cars. What do you think about that?
CHAIRMAN PELLEGRINO: Thank you, Paul. Would you
respondents pick one or two of those questions?
DR. SIMINOFF: I guess the last question which gets
the grease, I guess. I think what you said is interesting and
certainly there — the first question or mention, the issues of time,
and those are very real issues and I think that even though there are
many physicians who really would like to sit down and have these
discussions with families, they simply are unable to. I mean, if you
look at what goes on in an ICU, I think there's a tradeoff here.
They say here is a patient that I can't do anything
more. They're dead or they're about to be dead and they need
to make certain decisions. Now, I know that we have traditionally
thought that it's physicians that really have to do with families
and patients, but there are many, many other health care workers.
There are nurses and social workers, and yes, these people from the OPO
that are well-trained, do really care about people and really can
perform these functions.
So I guess when I understand physicians who say to me,
"I care about this issue, I don't really have time for it and
I'm sorry but I just don't," what we've found is that
when you have physicians who are that pressed for time, you're
better off not having them do it, because they don't do a good job
and I mean, I've seen physicians who sort of say, "You know,
here's what's going on, they're brain dead. They could
donate, let me know." Well, that's not a conversation,
that's doing an injustice. So I do think we need to seriously
think that there are other health care professionals that can show
caring and compassion and provide good care to these families in lieu
CHAIRMAN PELLEGRINO: Thank you very much. Dr.
DR. POWE: I'd just build a little on that. I
don't think it's been in physicians' training to get much
training in doing this so a lot of them are even uncomfortable with it
and when they're uncomfortable with it, that makes it even more
difficult. The issue you raised about autopsies benefitting, one of
the issues that's not clear that if I donate whether I actually
benefit. I think in the living related one there is more of that,
"I'm benefitting my family." And I think that's one
of the things to consider, you know, is should there be incentives if I
donate and I need something in the future, is somebody going to, you
know, step up to the plate, you know, for me or for my family. And I
think that's one of the issues around incentives.
You know, I guess the other question that has been raised
is how might we make available more organs. Well, I think people have
looked at this, you know, in the cadaveric issue and the living
donation. A lot of people think we should push living donation as far
— that's not even as far as it should be, that, in fact, when
families have an affected individual, they can't find anyone in
their family who would step up or feel comfortable. And so there's
been interventions now that have been tested, trying to be tested in
the living donation category.
And you know, as you know, the biggest thing now is really
whether there should be incentives, whether it's non-monetary or
monetary incentives for cadaveric donation is a big issue and
something, I think, the Committee has to wrestle with.
DR. SIMINOFF: Just one thought about that, for the
first time, living donors surpass by just a little bit the numbers of
donors from deceased donors. So deceased donors is actually a smaller
component. I actually believe that living donation, it's not that
it's not a good thing, but we have to recognize that there are real
risks to the people who are donating and so it seems to me that
we're morally obligated to make the deceased donor system the best
we can so that we can maximize the donors that we do have from the
deceased who, after all, at least according to most of our
understanding do not need those organs any more, so that we can
diminish the risk that we're asking people who are living to
So I actually personally believe that although I'm
certainly not against living donors, I think we actually have a moral
obligation to maximize the deceased donor pool so that we can put as
few people at risk as living donors as we can.
CHAIRMAN PELLEGRINO: Dr. Powe, one more, we have just a few
seconds. Go ahead.
DR. POWE: Okay, let me see if I can — the first
comment was a comment about should we be campaigning for more
preventive help and that's what I do, but — and I would applaud
that. However, I don't think that's going to do much in the
next 10 to 20 years. I mean, maybe we can get there. By then we
should do that. We should be looking forward. I think we need a
multi-pronged approach here but there's going to be a lot of
problems between now and when we get there. So I think we have to do
something here and now.
The other comment was about live donations in the younger,
kind of subsidizing the older's health. Interesting. I think in a
live donor it's a different issue because it's often family
members and yeah, you know, my mother just turned 80 if she needed an
organ, would I step up to the plate? I probably would step up to the
plate. So whether that's true in the deceased donor or whether you
even have control over that is an issue. So I think — I'm not
sure there's anything wrong with that in the living donation
CHAIRMAN PELLEGRINO: Dr. Siminoff, one more.
DR. SIMINOFF: Yeah. In terms of that whole issue
about the people who are over 65, I think that being over — as I get
closer to it, I think being over 65 now is surely not what it was 50
years ago. I think people are certainly — despite chronic disease, I
think people are certainly healthier and are leading more active
lives. I think those are issues about rationing. When we initially
rationed dialysis, we had huge problems. We had huge inequities and
I'm uncomfortable with the idea that just because you're 55 or
60 that you're somehow less worthy than if you're 12.
I mean, of course, the death of a 12-year old is a tragedy
but for the family of a 60-year old, the death of a 60-year old can be
equally a tragedy. I don't know how we weigh that and I guess
that's why we have a President's Commission to do that.
DR. POWE: Yeah, and the system today, I mean,
children are preferred. They're more privileged in the current
system in terms of getting transplants and many of the children — most
of the children who have end stage renal disease, you know, eventually
gets transplants. The waiting time is much less for those individuals
and I think that's appropriate.
DR. SIMINOFF: And remember, there are size issues.
So you can't take the kidney or the heart of a six-foot man and put
it in a six-year old child.
CHAIRMAN PELLEGRINO: Dr. Powe, Dr. Siminoff, thank you very,
very much. Council members, thank you also.
CHAIRMAN PELLEGRINO: I want to thank you all for
your forbearance on the time limitations. We will extend the rest
period until 11:00 o'clock.
(A brief recess was taken.)
SESSION 2: ORGAN TRANSPLANTATION AND PROCUREMENT—LITERARY AND PHILOSOPHICAL-ANTHROPOLOGICAL PERSPECTIVES
CHAIRMAN PELLEGRINO: Attention. All right, thank
you very much, those of you who are seated. Thank you very much.
Thank you for reassembling, thank you very much, all the Council
We move to the second session from the empirical data, the
sociological and the numerical and clinical data, we move to another
area from the literary and the anthropological and the philosophical
sense, views of organ transplantation. And I'd like to call on our
first speaker for this next session, Mr. Thomas Lynch, the author of
"The Undertaking, Life Studies from the Dismal Trade and Bodies at
Motion and at Rest." Mr. Lynch.
MR. LYNCH: Well, thank you, Doctor, and thank you for
the invitation to be here. I want to thank Dr. Davis for that invitation
and I was asked to hold court for about a half an hour and then
there will be questions and answers. I'll endeavor to hold
court for a little bit and on the subject of questions and answers,
I should say that I look forward to them so that we can go in the
direction of your interests as well as mine.
I should also say that I cannot be offended. I've
raised teenagers, so I'm thin-skinned, but amply padded so ask
away. (Laughter) I embalm and do sonnets and I'm happy to
entertain conversation between those subjects and if I don't have
an answer, I'll make something up.
But I thought I'd take advantage of the audience and start
by reading a poem since we are considering literary aspects of organ
procurement. And some years ago I was asked to — as part
of my indenture to a British publisher, to do a reading at Guy's
Hospital in Central London in what was called the Old Operating
Theater. It was, I think an 18th Century amphitheatric
room with, you know, few props. The only thing that they had there
was you know, a wooden table with some sawdust, a bucket and blades.
I think maybe this is familiar to the medicos among us but for me
they thought it was particularly apropos, because I'm a funeral
director, they thought I'd be really comfortable there. Don't
you just love them for those types of considerations. So this is
a piece called, "The Old Operating Theater, London, All Souls
Night." It's taken — there's a part of it taken
from that lovely passage in Genesis where Abraham has that
dream about becoming the father of a nation, you'll remember
this. There's the good news, A, he's going to be the father
of a nation, and then the bad news, at least if you're one of
his tribe's people, that everyone must be circumcised, at least
the men. And I always tried to imagine the number of them running
off into the desert on that morning when he first announced this
Old Testament to them.
"To rooms like this old resurrectionists return the bodies
they had disinterred. Fresh corpses so fledgling anatomists could
study origin and insertion points of deltoids, pecs, trapezius and
count the vertebrae, the ball and socket joints and learn the private
parts and Latin names by which the heart become a myocardium, the high
cheekbone a zygoma, the brain less prone to daydream is a cerebellum,
and squirming in their stiff unflinching seats apprentice surgeons
witnessed in the round new methods in advanced colostomy, the
amputation of gangrenous limbs and watched as Viennese lobotomists
banished the ravings of a raving man but left him scarred and drooling
in a way that made them wonder was he much improved. But here the
bloody masters taught dispassionate incisions, who to suture and
In rooms like this the Greeks and Romans staged their early
dramas. Early Christians knelt and hummed their liturgies when it was
held that prayers and penance were the only potions. Ever since
Abraham guided by God first told his tribesmen of the deal he'd
made, their foreskins for that ancient covenant. Good medicines meant
letting human blood. Good props include the table and the blade. Good
theater is knowing where to cut."
So I read that in part because it introduces us to this
morning's considerations of bodies and body's parts, their uses
and abuses, the issues of function and dysfunction, mortality and
vitality, pathology and personhood, the living and the dead. These are
topics that have always interested me. And the language of these
issues, words like harvest, procurement, consent, donor, recipient and
more lately, seller, buyer, agent, this is the language of the farm and
market, of the foundation and institution and suggests a set of long
established guiding principles or corporate policies and longstanding
We talk now of future in the cadaveric tissue and organ markets as if
we were talking about crude oil or soy bean futures, and suddenly
we seem, we human beings, to quote from the songwriter Rufus Wainwright,
"to be so many cubic feet of bone and blood and meat and nothing
more." My experience as a funeral director for the past 35
years, as the son of a funeral director for the years before that,
as the brother and — brother of funeral directors and father
of funeral directors now has taught me just the opposite. That
we are more than the sum of our parts. And furthermore, our parts,
our limbs and organs and remains represent more than remnant or
accessory or fragment. When speaking about human bodies the part
is an essential portion, not an accessory, of the whole and it's
precious to the owner whether the owner is the body in its current
incarnation or the surviving bereaved family.
My experience with bodies and the parts of bodies over the past
35 years has taught me that our dead are precious to us because
ours is a species for better or for worse, that has learned to deal
with death, the idea of the thing, by dealing with our dead, the
thing itself. I'm borrowing here, I think from Wallace Stevens
who makes the distinction between the idea of the thing and the
thing itself. And it casts me back in imagination to, depending
on what channel you're watching at night, 40 or 50,000 years
ago when the first human widow awakened in that cave to the dead
lump of protein next to her and said something on the order of,
"My he's very quiet this morning," or words to that
But depending on the season and the weather, sooner or later she
would begin to sense, actually, she'd being to smel,l that this
stillness was a different stillness than he or she had ever experienced
before. She knew she'd have to do something about it. Ours
is a species that deals with the idea of death by dealing with its
dead. She knew she'd have to leave the cave to him in which
case, I suppose, it would become his tomb. Or maybe she thought
she'd drag him out by the ankles and kick his sorry self over
the cliff, in which case we could call him "consigned to that
oblivio" or maybe she'd build a fire and burn his body,
or maybe she'd scratch a hole in the ground and tip him into
Whatever she did, whatever oblivion she consigned him to 40 or
50,000 years ago, it was the questions that quickened in her looking
into that void that became, I think, the signature of our species
that separates us from rock bass and rhododendron and cocker spaniels
and other living things that die. As someone quite rightly pointed
out and you can try this at home, the numbers are convincing on
this, hovering as they do around 100 percent. But that is a sadness,
whether it's a crisis is for us to discuss. But looking into
whatever oblivion she consigned that first dead thing to, she asked
the standard questions. I hear them asked by widowed people today:
"Is that all there is? Can it happen to me? Why is it cold?
What comes next?"
So ours is a species that for better or for worse, while
the dead do not care and you can try this at home, too. I've spent
a fair amount of time around cadavers, corpses, dead neighbors, dead
friends and family and never once has one of them said anything like,
"I want the blue pinstripe suit or the cherry casket or the mum
plants, please in my behalf." They say nothing. They are mum on
the subject. The dead don't care, you can take that to the bank.
But the dead do matter.
They matter to the living in ways that we're only beginning
to understand. And so part of the considerations here as you discuss
bodies and the parts of bodies, I would encourage you to take on
more of the notion that whether we are talking about the parts of
bodies of dead gangsters, buried maybe in Milford, Michigan, as
we found out last month when they went digging for whatever is left
of whatever remains, whatever might be there of Jimmy Hoffa, at
Hidden Dreams Farms, or whether we are looking for our dead at fresh
kill landfill site after their murder is commingled, their bodies
are commingled with the act of their murderer on September 11th
in our great cities, that the dead are with us. We are all haunted
— properly and happily in some cases — by not only their
memories, but by their remnants. I have seen this not only in consideration
of organs transplanted or tissue donated, I have seen this in how
we consider fetal deaths, expectancies, the whole notion that has
fueled the... our concerns over the abortion and reproductive rights
conflicts in this country over the past 30 years, just like the
ones that are fueling the ones about so-called "assisted suicide,"
are based on the notion of when death happens and when life is.
And there is a difference, as one of your panel pointed out, between
the notion of medical death, metabolic death and the notion of social
death and spiritual death and actual death as far as your family
is concerned, and those are the things this council must wrestle
with when you seek to set forth useful policy. I might know, for
example, that at the end of a process with cremation, we end up
with say 14 pounds of bone fragment and dessicated tissue that we
can put in a box and hand to the family. But when you see the elderly
sister come to claim the ashes of a sister whose own children couldn't
come and get her, when she bears that box like Viaticum, when she
walks out the door, flips the button to open the trunk and then
reconsiders and goes to the back door and opens it up and then thinks
better of it and closes it again, when she goes to the passenger
— front seat passenger door, opens it up, places the box on
the front seat and then clicks a seatbelt around it, you can see
that whether we are remnant or icon or relic is not up to you or
me. It's up to the living that bear us in their memory and
in fact, that bear our mortality because we are mortals, we are
humans. We are tied to this humus, this layer of earth from which
our monuments and our homes and our histories rise out of.
The dead are everywhere. When my father died in Florida many
years ago, my brother and I got on plane to go down and prepare
his body to bring him home to Michigan. And I can remember thinking
as we saw him laid out on the embalming table of the Myers —
or the Anderson Funeral Home in Ft. Myers, Florida, thinking at
first, "This is what my father will look like dead," and
then, "This is my father dead," and then, "This is
maybe what I'll look like when I'm dead," because we
dispose of our dead and then become them. And we do not dispose
of their parts easily.
The market, the retail event involved in organ and tissue procurement
is something that may have medical consequence but to most families
it remains a mystery, tied up, as your Council has rightly put forth,
in issues of personhood, not parts. There's this "just
a shell" theory of how we should relate to dead human bodies.
You hear a lot of it from young clergy and old family friends, well-intentioned
in-laws, folks who are unsettled by the fresh grief of others.
You hear it when you bring a mother and a father in for the first
sight of their dead daughter killed in a car wreck or left out to
rot by some mannish violence. It is proffered as a kind of comfort
in the teeth of what is a comfortless situation, consolation to
the inconsolable. Right between the inhale and exhale of the bone-wracking
sob such hurts produce, some frightened and well-meaning ignoramus
is bound to give out with, "It's okay, it's not her.
That's just a shell."
I once saw an Episcopalian deacon nearly decked by the swift slap
of a mother of a teenager dead of leukemia to whom he had tendered
this counsel. "I'll tell you when it's just a shell,"
the woman said. "For now and until I tell you otherwise, she's
my daughter." The woman was asserting the longstanding right
of the living to declare the dead, dead. Just as we declare the
living alive through baptisms and lovers in love by nuptials, funerals
are the way we close the gap between the death that happens and
the death that matters. It's how we assign meaning to our little
remarkable histories. And the rituals we devise to conduct the
living and the beloved and the dead from one status to another have
less to do with performance than they do with meaning. In a world
where dysfunction has become the operative adjective, a body that
has ceased to work has, it would seem, few useful applications beyond
those we are talking about here this morning. It's dysfunction
more manifest than the sexual and familial forms that fill our tabloids
and talk shows but a body that doesn't work is, in the early
going, the evidence we have of a person who has ceased to be and
a person who has ceased to be is as compelling a prospect as it
was when the neanderthal first dug holes for his dead and set our
species apart from the others.
The bodies of the newly dead are, therefore, not debris or remnant,
nor entirely icon or essence. They are rather changeling, incubates,
hatchlings of a new reality that bear our names and dates, our images
and likenesses, as surely in the eyes and ears of our children and
grandchildren as did words of our birth in the ears of our parents
and their parents. It is wise to treat such new things tenderly,
carefully and with honor.
So I encourage the council as you go to work wrestling with
these difficult issues, that you consider the traffic between the
living and the dead because in most of these situations, there is no
medicine or math, no bottom line or Bible verse, that will explain the
mystery that we behold when we behold someone we love dying or dead. I
know this for a fact, not only because of my professional and personal
experience, because I sense it in the lives of people all around me.
Today as we speak, my sons are conducting the funeral of a
man who died on Sunday in a car wreck near Milford. He has a son who
is two years old and his wife is pregnant with their second son. They
have decided to name this new thing, this yet to be born son after his
dead father. Before he was brought to the funeral home, an OPO quite
properly asked his family, his widow, his newly widowed wife if she
would make what is called the gift of life. She decided yes. That
would assist her. The notion that he was ongoing there in the
intensive care ward. That he would want that, that he was always full
of life and he would want life, such as he knew it, to be given to
anybody else who could get it from him.
So we don't have to wonder the comfort that that wife
and family feels in knowing that somebody out of the sadness that has
occurred to that family, will be saved or lengthened in their lifespan
or returned to their family in a way this man will never be, but those
are mysteries. And when she holds her new son five months hence, named
for the dead man he'd be named for, she'll know that mystery.
It's about living and dying and ceasing to be.
Let me close with one more poem so that you can tell your
adult children or teenagers tonight that you, among other things, went
to a poetry reading. It's like being the President of the Rotary
Club, you only have to do it once and it goes in your obituary, so
(laughter) once you've heard this, you are a raconteur of literary
events. I give it as thanks, in part, for your listening to our
conversation. To have a room full of experts and studious people
consider these things, is like going to the shrink and not getting a
bill for it, so I'm very grateful. (Laughter)
A Death, it's called, I mean, it's an occupational
hazard for the likes of me. In the end you want the clean dimensions
of it mentioned, to know the thing adverbially while asleep after long
illness, tragically in a blaze as you would the word of any local
weather where it gathered, when it got here, how it kept the traffic at
a standstill, slowed the pace, closed the terminals.
Lineage and issue, names and dates, the facts you gain more confidence
in facing, histories and habitats and whereabouts. Speak of it,
if you speak of it at all in parts. The CVA or insufficiency or
growth that grew indifferent to prayer or medication, better a tidy
science for a heart that stops than the round and witless horror
of someone who on a dry night in perfect humor, ceases measurably
to be. Thank you, God bless.
CHAIRMAN PELLEGRINO: Thank you very much, Mr.
Lynch. We will proceed —
DR. FOSTER: Mr. Chairman, point of interruption for
a second. I wonder if you would ask that the little poem be printed
out for us as a gift for your very gifting speech.
CHAIRMAN PELLEGRINO: Thank you very much. We will do
as we did this morning and have our second speaker, Dr. Stuart Spicker
and then a member of the council will open the discussion of both
papers. Dr. Spicker is Professor Emeritus of Bioethics, Philosophy,
at the University of Connecticut. Stuart?
DR. SPICKER: That cliche about a hard act to follow, A,
it's not an act and it was wonderful that you preceded me because
you said so many things, the shortness of time wouldn't even
let me introduce, never mind develop. So out of the blue, we're
kindred spirits and we have never met and perhaps, not read much
of one another either. Who would have presumed that?
On May 14th, 1964, I met Dr. Edmund Pellegrino for
the first time at the VA Hospital in Lexington, Kentucky. As coincidence
would have it, I turned, oh, dear, 27 that day. We were both attending
the opening session of the Second Lexington Conference on pure and
applied phenomenology. I promised I wouldn't use that word much
with the Council, which was the second of five Lexington conferences
all organized and their proceedings published by Dr. Erwin Strauss,
eminent psychiatrist, philosopher and gentleman. Indeed, the Lexington
conferences were the true birthplace of what later became the trans-disciplinary
symposia on philosophy and medicine and the subsequent book series
"Philosophy and Medicine," which continues today under
the competent authorship and editorship of my close lifetime friend
Dr. H. Tristram Engelhardt, Jr. of Rice University, Texas.
Having formally studied in — with Hans Jonas at the New
School for Social Research in New York City from 1959 to `62, I
came to appreciate the work of one of his disciples, Dr. Leon Kass,
whose "Teleology and Darwin's The Origin of Species:
Beyond Chance and Necessity?" Do you remember that Leon? (It)
was published in the Festschrift honoring the 75th
birthday of Hans Jonas in 1978 on May 10th and that became
Philosophy and Medicine Number 7, and a joy to do.
Today, therefore, is not only a personal honor, but also a very
special occasion for me, to be reunited with these distinguished
two gentlemen and you the other learned members of the President's
Council on Bioethics. I come here as disciple, therefore, having
followed the paths first pressed down by my predecessors, principally
philosophers and physicians. I recall, as you students may, and
you should, that the philosopher, John Dewey had published a book
and that book was titled "Experience and Nature." He
provides there in the opening section, precisely such an image.
As humanity walks the earth everywhere making new paths, nature
becomes transformed into experience. It's a wonderful idea
and hence, his metaphysics. That's what this book is.
Well, today it's time to begin another, though surely
shorter, Dr. Pellegrino is in the chair, a shorter walk, this time to
transform better to, may I say, incorporate one man's experience,
not mine, as patient and research subject during the years leading up
to his receiving a heart transplant from a young woman donor. That is
I'm coopting this man, Mr. Ed Linz into the philosophy of medicine
as well as philosophy in medicine, that's bioethics, to borrow a
distinction made salient by Dr. Pellegrino some years ago.
I have to apologize to the audience, not to the Council
because the paper is not distributed for you to read ahead of time as
it was for the Council since it's pretty dense and probably would
serve more to embarrass me than to get my ideas across, so we've
all agreed, I would not read it and it's readable, I hope and
it's only a draft still, nothing ever is finished. And so it
should be online. I've been promised that as with all the
proceedings and transcripts and so on, so if you're interested, it
can be read at some later time when the staff is prepared to put that
out online. And I thank you and the staff for all that work.
The title of the presentation I gave is "A Transplant Recipient
as Patient and Research Subject," subtitle, "Exploring
the Zones of Corporeality Between Leib and Körper." I purposely
used the German words "Leib" and "Körper" because
the English, soul sometimes and body, are nothing but misleading,
confusion as prevalent all the time and what I'm about to say,
I hope will begin to clarify some of this Cartesianism which is
still with us in everyday speech. With respect to my deep respect
for American jazz, may I say that my favorite jazz tune is still
"Body and Soul," but by the time I'm done, soul will
be like "it" in "it is raining." It will refer
So for the moment, let's do a little slow reading in my case
of the German from Nietzche. I want this quotation right up front
today. I'll translate it only because my German is weak and
I must be clear about what I am saying. Many of you know many languages
but the German is important because of Leib and Kopor and the fact
that Körper is not used in this quotation from Thus Spach Zarathustra
penned by Nietzche or published by Nietzche in 1891.
In fact, the first part of that work is called "On the Despisers
of the Body." We'll get to that in greater detail. So
it goes like this in German, (Speaks in German). Translation: "Body
am I and soul," thus speaks the child. And why should one not
speak like children? But the awakened and knowing say, "Body
am I entirely, and nothing else and soul is only a word for something
about the body." At this point, may I say, and this is important,
staying with the Germans for the moment, who've given us through
Wittgenstein another insight, he defined philosophy as the overcoming
of the bewitchment of our intelligence by means of language. Isn't
I think of the toolkit. You build something with it and when
it breaks down all you have are the tools that helped you build
it. So we are in a paradoxical situation of finding that we abuse
and confuse our intelligence because of the use of language, and
we can only save ourselves from that abuse by the use of language
in the creation of neologisms and all the rest that goes with using
a language. Typical Wittgenstein, but terse and to the point, but
signals a tremendous obligation and danger, since only language
can help us clarify what we muddle up in intelligence. It all began
with language, even Zoleta Tas Kint (phonetic) even the language
especially of the child and we still speak like children, how else
can we speak.
Now, just a few words about these words. Talk about what I
saw in the literature some time ago, that famous F word, since it's
polite to use that expression. Well we've got some beautiful
four-letter F words, body and mind for example and soul another F
word. We're being forewarned, I think, of what's coming,
namely I hope in the remaining time I can talk about three things at
once, so to speak without being too confusing. We have one man
who's both a patient for a long time, and he still is, and a
Secondly, we have to tiptoe in and out of the philosophy of
the body for lack of a better phrase in English and finally, I have a
little to say, not very much, about organ transplantation, since Dr.
Pellegrino gave me the assignment to, perhaps, mention what I saw as
one, perhaps, two but only one issue of bioethics as I see it in the
context of organ transplantation if time permits, because that, indeed,
is the next session and it would be at least a transition.
So let me proceed with these three general themes coming in and
out of them, especially the first two, as I proceed without reading
you this paper. First, this word in English, "subject,"
is, to say the least, ambiguous. We use it when we're serious
as the center of what it means to be human as the being who's
the source of his or her moral choices. This however, is not quite
what became the meaning of the word as we began to use human beings
as research subjects. We kind of threw them under, yes? That is,
we have to look at them, if you're the researcher now from your
perspective, how do you see these people you're trying to co-op
into with informed consent and the rest to be subjects for your
— participants in your study.
I should tell you that due, I think, to political correctness,
even at the Hastings Center, the subtitle of IRB, their Journal,
changed from "subject" to "participant." I
caught that, I was looking more carefully one day. And so it's
not an accident, the idea being it looks too dehumanized, sounds
too dehumanized. Participant, I'm almost consenting already,
it's in the word, but it's hard to talk about this one man,
Mr. Linz, who's his own research — well, what is he?
Is he a participant? Well, he's not in a study. He's participating
in his heart transplant situation and we will see when eventually
you read this, as some of you of course have, you'll see that
— I like this expression — this man, lo and behold,
this man went through the entire American armamentarium of medicine
if it was a medicine cabinet that's in there. You name it,
he had it from the very beginning of the diagnosis to finally that
heart transplant of the young lady. There is nothing virtually
that didn't happen, and that will include, as I hope to get
to briefly, all kinds of prosthesis, not to mention the drugs.
They have to somehow be incorporated.
By the way, by the way, this is very, very important. Allow me,
because I can't help it, I'm going to speak like a child,
too, and you can catch me every time and you'll be really sharp
because I'm going to slip into Cartesian language when I don't
intend to, when I reject it, I'm going to do it all the time.
It's that powerful, it takes hold of you. It's impossible
to avoid it. For example, embody, that doesn't sound like one
entity, it sounds to me like two. Embodiment, a word Dr. Zaner
used in his work and so on, embodiment, is that speaking with forked
tongue when I talk about soul doesn't refer to anything, but
there's only body? But don't think you know what I mean,
when I talk about body because I'm going to mean something much
broader than what your anatomists mean or certainly your brain surgeons
mean or certainly your neuro-scientists mean by "brain"
or "body." In any event, you can feel the worry about
language, that's what maybe all we philosophers have to contribute
if anything, and Wittgenstein knew it and when we get it straight,
we can throw away the ladder because we've clarified how language
is constantly bewitching us but you can never let your guard down.
Now, from subjective and objective and then objective science,
that is mathematicize whatever it is you're working on that
comes out of the Galilean tradition as far back as Pythagoras, all
of you know the history of science and quantification. So we take
our move now to the other words. The term "human body,"
"physical body," for those who have studied enough Decartes,
at least got into the Meditations at least got to read Meditation
1 and 2, you've gone far enough. That is to say, well, because
he's so powerful he'll just overwhelm you and you'll
wind up like the rest of us. Maybe you can avoid it. It's
so powerful and such a genius.
Let me digress, I'm backing away. Again, don't confuse
Cartesianism with Descartes' philosophy. The man is not the
followers of the man. This was a very special time. I looked this
up to get the exact date. Galileo's trial, and you know the
tribulations and trial and the recent book, Galileo's Daughters,
wonderful book, 1633, the trial, 1633, Descartes' Meditations
in another country, he's in France, 1641. That's not very
much time, even then. So I maintain when Descartes writes in his
notebooks, Larvatus Prodeo, "I come forward in a mask,"
in quick form, ladies and gentlemen, I've always held and still
hold and I have people who join me, like La Mettrie he was not being
straightforward. He was disingenuous in the Meditations
and Descartes is not a Cartesian.
He does not hold to the strict form of his own res extensa,
res cognans distinction but it's fantastic. However,
Princess Elizabeth of Bohemia, it takes a woman to found him out,
and not let go and she doesn't let go. Well, Descartes, how
is it possible that these two entirely different substances could
possibly come together to make one unified human being if we are
both of two totally different substances? Answer, Galileans are
already smart, they know their anatomy, in the pineal gland. Well,
wait a minute Descartes, that's material. So, I'm back
to my first question, sir. And answer, well, God must intervene
there and God intervenes in the pineal gland and that's where
you become a unified person until you have some brain pathology
and you guys all know the rest. The rest of that trip is the history
So I just wanted that little interlude. I didn't want to
fail to mention it. It gives me a little confidence that this ruse
that's coming forward as an amass, we've inherited that.
I call that Cartesianism rather that Descartes because I think Descartes
knew exactly and precisely what he was, so to speak, putting forward
in his historical moment. Well, then we have the res extensa
famous example, I don't have to teach Descartes here to you
today to you eminent folks, but he gets pure body out of that.
And that, no matter how a block of wax needed changes, one thing
doesn't change, it is the same wax, he says, when melted down
and cooled as what we started with. So we've got physical universe,
everything, including the human body, okay, that's what that
looks like. And then secondly, of course, his argument in the first
Meditations that the mind or soul or psyche exists. He
proves that by his immediate connection to cogitations as he calls
them. Enough of the history of philosophy.
What now has to happen to come forward to the 19th,
20th Century is to see the transition by those eminent
psychiatrist philosophers, Binswanger and many, many others we could
name and Erwin Straus, namely the Leib-Körper distinction that I
already have mentioned and why the German is better than the English,
it helps us to do it. A fast footnote here, Körper is not corpse.
It's not the dead body for autopsy. We will see it as an extreme
condition of still unanimated human. I'm going to use that
word. And Leib, to give you this other extreme, my favorite example
is playing the piano after some years without the sheet music.
You really aren't mistaken to say the body knows how to play
the piano if it's the piano. You call it memorize but the fingers
seem to know it too. There's a strong sense in which the fingers
know and the hands know and the whole being knows that work that
you're playing. Or the athletes, since we have always references
to sports and other teams, these people are purely fully-lived bodies
in their activities of their sport. They don't think about
their illness at the time or whatever they're undergoing. They
are immediately and totally fulfilling and living through the moment
and the motion and the self-motility and the uprightness and all
the things that go with the current philosophy of the body of those
psychiatrists I mentioned.
So what I've tried to say that's different in this paper
than my older papers and other older papers, is I think we can distinguish
certain and slightly different, I'm calling them zones of coporeality
for lack of a better way to put it. The first is "Leib,"
the fully lived personal being in action. The second is "Leib-Körper,"
a lived thing body. The third is "Körper-Leib" and "Körper-Leib"
is sort of what happens, you're experience as you're quite
ill. I find it's almost paradoxical. I think that's the
Cartesian distinction almost, because I don't buy that he bought
either. But that's getting close. Your body is just the burden,
In fact in asomatoagnosia as you may know this case the psychiatrists
often deal with, in asomatoagnosia the doctor has his hand on the
table on the patient and the patient says that this arm, the doctor
points to the patient's arm says, "That's not my arm,
that's yours, doctor," and he means it. It's not duplicity,
fabrication. It's not lying, it's not self-deception.
It's really this doesn't belong to me, yet it's fully
attached. You know, interesting disturbance and it probably has,
it usually always has some neuro-correlate which is something is
awry and that's so the specialist, we philosophers don't
argue with the scientists with good science and with good neuro-science.
There's no grounds for that. It's just — it's
not the whole story.
If we could just get these people in this field to
understand, I say this. It sounds like such arrogance, I know, but it
just came, you want to shake them up, the Churchlands, with all due
respect and the others. You know the brain and central nervous system
are the necessary conditions for certain, perhaps all kinds of
experience, but they aren't the sufficient condition to unravel
what that experience means. And I believe members of the Council, I
know Dr. Kass has spoken to that, I think, in response I'm trying
to tie this back into your meeting with Dr. Churchland at the time,
which he did not — as I reread the transcript could not answer the
question because the intellectual position on it is just indefensible,
but enough of that.
I just wanted to tell you as an aside that this is so stressing
and distressing to continue to see all of this going on today in
the 20th century. I was telling Dr. McHugh I have this
kind of simple-minded theory, Dr. Pellegrino will remember when
he taught this in medicine and he taught that in many other things,
when surgery — the surgeon using the hands, these are menial.
No status in that, they are your earth and mud and knife and blood
and all the rest, and now brain surgeons get the highest pay in
medicine, I think so. I think they're the highest paid certainly
in surgery. Okay, that's happened. Is it an accident historical
that we are now in a situation where philosophers like Professors
Churchland and many others are themselves sort have been totally
taken over — have taken over the neuro-science. They review
neuro-scientists' books. What's happening here? Is it
purely accidental? How did the kind of brain get back into philosophy?
It's kind of weird question to put it that way because I don't
think philosophy is based on brains.
It's based on brains being a condition for anything
human but no more philosophy than walking, that crawling. Well, in any
event, it's for me a fascinating time to see really this rise and
the way this has all happened within philosophy and philosophy
departments, which it wasn't like that when I began my own
studies. Well, I don't have time to take you through — I wrote
here page 17 for the sake of the council members where I do quote the
— I do quote Mr. Linz. Fortunately, Mr. Linz wrote a book about his
entire experience and he calls it "Life Row." Isn't that
a great title, trying to stay alive till he got that heart transplanted
in him at the very end and he's alive and well, by the way, and
lives in Virginia. And he was a — just for the sake for a moment, out
of respect to him, he was a commander at the Rickover of a nuclear
submarine and he got out of the Navy, he got enough and he's
teaching high school and he was a coach, math teacher, and he's
doing okay. I called him a few weeks ago and said, "I'm going
to the President's Council and you're the star, so I want you
to know I'm using your name one more time."
He actually corrected this paper for me in places, the one the
Council has because there were certain quotations and things about
his experience. Well, they're wonderful. Maybe I can just
— I see I have a few minutes, don't I? We can go to —
the Council and I, at least, can go to page 17. Just take these,
some of it may not be quite right. I'm still working on this.
It's when he's in Leib mode, Leib zone, okay, he's not an
athlete at this point, Leib. "I feel lousy, not so hot."
The surgeon told Linz, "You won't even know that it's
here, there. It's the ICD," the implanted cardio defibrilators.
"My donor's heart is part of me," you get the picture,
fully incorporated, living a life, doesn't think about it any
more. Now and then he may, but he's doing what we all do with
our hearts up and running as they are.
This is Leib, now Leib-Körper: "I felt no sensation from
the actual high frequency sound waves that were mapping my heart,
my heart," do you hear the distancing about his own internal
organ? Let's see, "mapping my heart. It was never the
physical pain, but the immediate fear that my heart would not respond
to the shock and I would die immediately." There's a kind
of detachment going on is what I would claim. Now, Körper-Leib,
"The right ventricle of my heart was not working well and both
my right atrium and right ventricle were enlarged due to the sarcoidosis
that started all of this, but the sarcoidosis did not spread throughout
my body. I now had two metal encased computer systems inside my
body keeping me alive." I'm calling that a description
under Körper-Leib. Do you see he's getting more Bionic Man-like
in the language. Do you see what I'm driving at? A show of
hands, class. That's the routine and maybe I didn't say
And here's Körper, remember it's not corpse,
"The doctor" he said, he gets a female doctor, this is
great. "The doctor, she said, might stick fingers in various
embarrassing places in my body. I was repaired by a laptop," he
said later. "I could lift virtually nothing. Getting up from a
chair was always an adventure." What I'm trying to say there
is, I'm taking those as descriptive of being much more thing like
than living thing like. Do you see my drive? I could be a bit wrong
on that last one. But do you get this picture?
Here's this male going to a female doctor and you kind of
have your eyes closed. What are you hoping? I mean, I've been
there. What are you hoping? Geez, will I not, first of all, get
off on this, think of the transcript. You know, I'm not supposed
to get excited from this. This is just, you know, I've got
to objectify this. I don't know what else to say, right? She's
got to do it, I have to go through it, I want this over with. I'm
going to thingify (sic) myself. Have we all been there? Do you
know what I mean? I'm going to thingify myself, hopefully for
as short as possible. And you cannot live in the body. It's
very hard to do but we do it better — that's not the best
example, but you know, we can do it. And I have it in the paper
for the Council which I will get to in my time.
I have the Weltanschauung where it's Plotinus and maybe
with the time I have, not to — not to fail to mention this, I think I
have to now that I've set you all up, I have to find that on page
— if someone would help me, the Plotinus, 19, thank you. I think I
almost have it. Well, 19 and 20, let me find 19. I hope I can in the
time I've got. Well, if I can't someone else — I've got
these pages all mixed up here. Oh, 19, having said about this
detachment, and making — putting aside, okay, putting aside body,
okay, just putting it aside, here it comes right from Plotinus himself
from the fourth Ennead, the soul's descent into the body and so
on. Listen to this theological experience, not a medical exam.
"Many times it has happened lifted out of the body into
myself." We've got a soul and body here, this is clear
dualism, Plato, right?
"Becoming external to all other things and self-encentered,
beholding a marvelous beauty, then more than ever assured of community
with the loftiest order. Enacting the noblest life, acquiring identity
with the divine," after all this is third century A.D. "Stationing
within it by having attained that activity, poised above whatever
within the intellectual is less than the supreme, yet there comes
the moment of descent from intellection to reasoning and after the
sojourn in the divine, I ask myself how it happens that I can now
be descending and how did the soul ever enter into my body, the
soul which even within the body is the high thing it has shown itself
to be. Plotinus' account of his soul's assent from and descent
into the body reflects not only his disdain for matter," and
in our context it's the thing body is limiting case, Körper,
"but an ontology or world view that is throughout sternly non-worldly.
Indeed, even the zone of corporeality, Leib, is nothing more for
Plotinus than a prison and all the heavenly bodies, the cosmos,
nothing more than a denigrated "evil empire." This is
"Everywhere we hear of it, the human soul is in bitter and
miserable endurance in body. A victim of troubles and desires and
fears and all forms of evil, the body, its prison or its tomb, the
cosmos its cave or cavern." Furthermore, as matter is absolutely
evil, absolute deficiency of good, and vice and body are one, he
adds," and I'll close with this, "for weakness in
the body is not like that in the soul. The weakness be in the fallen
souls, neither cleanse nor clean and in them the weakness will not
be in any privation but in some hostile presence like that of phlegm
or bile in the organs of the body.
"This is the fall of the soul, the entry into matter. Thence,
it's weakness, thus the cause once of the weakness of the soul
and of all its evil is matter. The soul would never have approached
matter but that the presence of matter is the occasion of its earth
life." So the human body, its earth life is like dirt or mud,
whereas the soul, the high thing, is like a perfect, I hate to say
diamond, that's material but you get the idea by metaphor.
So we have it, I think, but there is another Weltanschauungen
that stands this third century Platonism on its head and that's
the one where soul, Nietzche and others is just another name for
the body, that's not Plutonus, that's not the Cartesians,
and may not even be Descartes, if pushed. It's in Wittgenstein
one more time and I don't know if I can find that page, but
(speaks German), the human — now that's Wittgenstein using
Körper not Leib unfortunately. The human body is the best picture
of the human soul. Well, that's I think — except for
my concluding word, that is all I would have time for today except
to signal to you just that one little problem in bioethics that
maybe needs consideration when looked at from the point of view
of the Council on transplantation, organ transplantation, to be
specific. Let me see if I can locate that.
But I know the problem so I'll just say it in the few minutes
I have left. And it goes like this: Ed Linz and thousands more
if we consider all organ transplantations of all types of organs
including intestines which I tend to fail to mention some time and
of course, livers and the rest, if we consider all of these organs,
these people who receive them are on immuno-suppressants and they're
on them forever. They're very expensive, someone is paying,
insurance or the individuals or what have you. Question or point
of fact, they're beginning to organize, these people, and they're
making a certain claim. The American pharmaceutical companies
and industry have an obligation to do research and to find ways
that we can be taken off these immuno-suppressants, for this reason.
We are far more prone to cancer and infection and early death once
again, because the immuno-suppressive drugs, you know the general
biochemistry and the pharmacology, because we have been saved and
now we have another risk not of the organ rejection but of dying
or acquiring and dying of cancer and other infections like, of course,
the AIDS patients and so on or people who acquire these diseases.
So the question I think the Council might consider and I'll give
you one answer some people are giving, they say, no, no, this is
not the obligation of the pharmaceutical industry. But maybe it
is the obligation of NIH researchers. I haven't thought this
one through myself at this point. You know, I believe in China
and you can check this and we should check it, the staff, if you
wouldn't mind. That's the only thing I'm requesting.
I haven't found it. You can save someone's life, then you
must continue to save it, if it's in jeopardy. They don't
owe you. You continue to owe them. It sounds a little like that.
Here are the people who have been saved through the organ transplantations
and the immuno-suppressive drugs saying there's a societal obligation
to find new ways to take them off these drugs because they're
more prone to cancer and other infectious diseases.
Question, is there such a societal obligation and if so,
how do we fulfill it. Another expansive demand. Now another answer
is, well, let the drug companies get ahold of this who don't make
immuno-suppressants, right, and let them compete and put those other
guys out of business because they'll find what's cheaper and
what will get you off those drugs and these will not have the same side
effects and make you — have you in greater danger of acquiring and
dying from cancer and other infectious diseases. I'm just
beginning to think about this problem.
I defer to the Council. I don't know if you've
taken this one up. I haven't read all your transcripts. Have you
actually dealt with this particular problem? Okay, well, I thought I
would end with just this one concern that's arisen. I first heard
about it some months ago and heard about it again when I spoke to Ed
Linz, who is a member of such a group and so I thank you for the time
and look forward to the question period as my colleague does.
CHAIRMAN PELLEGRINO: Thank you very much, Dr.
Spicker. I've asked Dr. Meilaender if he'd be good enough to
open up the discussion on both of these papers, Gil?
PROFESSOR MEILAENDER: Yes, thanks to each of you.
There's an awful lot more in not only what you had to say here but
also in the written materials we got from you in advance than I can
possibly pull together here. But I want to make my way toward a
question, a separate question for each of you.
Professor Spicker is interested in the lived body, sort of
a complicated concept that he has there, that can move through these
various zones in which it become progressively more a thing and
although it never is corpse as lived body, I mean, the corpse would, in
a sense be the limiting case when it would cease to be that and then it
would be what Mr. Lynch deals in at that point. Now, we're
interested in thinking about taking organs for transplant from living
bodies and also from corpses. I mean, both of these are done. And
what I'd like to see is whether I can get each of you to help us
think from your own particular angle the sorts of things that
you've taken up, about that question.
So for Mr. Lynch, I'd ask you to respond to something
like this; you said in your talk and it's a refrain in one of the
pieces of yours that we had to read, "ours is the species that
keeps track of our dead," that's very nice. I like that a
lot. You never precisely tell us why and that may be okay. I
don't say that as a criticism at all but what I'm wondering is
this; if we — if we begin to manage death in such as way as to make
organs more available for transplant, if that becomes the primary
structuring — the primary concern that helps us to structure dying, or
if we ask families as they are in the process of letting go of a dying
loved one to consider consenting to organ donation, or if, perhaps, we
even offer them some kind of financial incentive to listen more
receptively to our request, are we doing anything that in anyway
undermines our ability to be the species that keeps track of our dead
or if we're not, say a little bit about why you think we're
not? That would be the question for you.
And for Professor Spicker, you deal primarily in thinking about
these zones of corporeality with the transplant recipient, that's
your example of Mr. Linz. I'd like to get you to think a little
bit about the donor. Although it's sort of complicated on your
understanding and I may not even have it fully sorted out, which
is okay, though, I think since you said you didn't have it fully
figured out either. You do say that sort of in terms of this process
of being sort of pure — in which we experience ourselves as
just lived body to increasingly thingafied in some ways that you
say that the sicker we are, the more likely we are — you hypothesize,
the sicker we are the more likely we are to be willing to think
of ourselves in more and more thing-like ways and that on the other
hand, the sort of healthier we are, the more we're just pure
Leib and little or no Körper, the less we're going to do that.
What I'd be interested in hearing you respond to is
whether there's any reason why a healthy person, when I'm
experiencing myself as Leib in your strong sense, whether there's
any reason that such a person should or should not donate an organ,
should, in a sense move into — move into and through that increasingly
thingafying process that I think would be required in order to do
that. You know, is there some reason that that would be appropriate
for one who is Leib or inappropriate. I'd like you to think about
that. So from those two perspectives, I'd be interested in
listening a little bit to what you say about donation.
CHAIRMAN PELLEGRINO: Mr. Lynch, please.
MR. LYNCH: Thank you, Doctor. I don't see this as
an either/or, either we take care of the needs of people in need
of organs or we downsize the honors or obsequies done for our dead
or the record we keep for them. I don't think that a concern
for the living needs to be trumped by honors or things done for
the dead. I see this as a constant traffic because as more than
a few of us have pointed out, every one who is living is going to
be dead and everyone dead was formerly living. So this is a human
condition, not a medical condition, not a retail event, not —
it's an existential problem and our culture is, as we might
have guessed, at odds in this. We do things that are — well,
for example, we spend a fortune on bringing our dead home, recovering
our dead from hurricanes and tsunamis and wars and other acts of
God and human nature, and yet, we are part of a species, part of
a culture that often times wants to look the other way. We don't
see our dead coming home from war. We are prevented from it. We
don't watch executions. We are — I see often times people
who constantly are in the market for what they — you know,
for a commemorative event at which, you know, the finger food is
good, the talk is uplifting, the music is life affirming, someone
can be counted on to declare closure, usually just before the merlot
runs out, and everyone is welcome but the corpse.
The corpse has been dispatched, downsized, disappeared by
usually someone like me who is called in the middle of the night with
a, you know, cell phone and a Gold Card and disappeared. We live in a
culture where in the space of a generation we have gone from two or
three percent cremation to 40 — well, 30 or 40 percent cremation and
all to the good because we are not, like our grandparents, grounded
geographically or parochially to a place. We are more divided and a
bit more scattered. So cremation suits us. And yet nobody sees
cremation, nobody wants to.
Everybody is in favor of cremation but nobody is in favor of crematories.
We don't like the burning part. And more and more people will
say, for example, speaking of their own deaths, "When I'm
dead, just cremate me," and the operative word in that is not
"cremate," it's "just." And the emphasis
is on the minimalization of bother and in many ways minimalization
of the body in such a context. The uses of the body become almost
entirely a matter of performance, extra parts. We become, you know,
the rag and bone shop of the heart as Yates called it. We become
just the parts.
I think the fully engaged — to take Dr. Spicker's
metaphor, the fully engaged species does both. They respond not only
to the apparent need, the manifest need for more donors, but they
respond to the — you know, to the human need to keep track of our
dead, to give them their due.
DR. SPICKER: I'm not sure I have the question
clear. Were you asking me about — first you distinguished corpses and
living bodies as the sources of the donation, so we can leave out
corpses because I thought you were asking me about the timing. Was
that the force of your question? That is, what — the zone of
corporeality one is in would this effect the timing of when you would
more likely get a yes than a no for donation or did I miss your
PROFESSOR MEILAENDER: No, I don't think
that's what I was asking. What I want to know is, is there
anything troubling or inappropriate or problematic about a person who
is experiencing himself as Leib in your sense, farthest removed from
pure body or thing or something like that, is there anything
inappropriate about such a person deciding to donate an organ in the
process of which he will inevitably have to come to think of himself
largely as thing? Is there any reason we shouldn't do that or is
that perfectly compatible with your understanding of these zones?
DR. SPICKER: Well, I'm glad you — zones,
right. I also tried — I didn't have the time to do what I did in
the paper, I was also signaling almost you could jump zones and you
could go in the reverse direction. There was no intrinsically logical
order to this business about one zone to another. I was just trying
to give a — let me call it a crude of the patient, the kind of crude
phenomenological description through his English account of his various
moments in his illness and when he's feeling better, both of those,
I was just trying to give sort of what I call idea types of statements
to capture and help me see the differences between these different
zones. So there's no logical distinction in a sense, between
So I don't quite see — I think I understand your question
better, that you — in consideration that you would be treating
yourself as some contributor of part, but this kind of comes back
to how I wish to construe this and I think it's something even
Leon pointed out in some other context, and I can view — I
can become such that I can — and that's the worry we have,
that we will, indeed view ourselves as just replaceable —
German has Teil and Stuck you know, just the replaceable Stuck are
pieces of cake as opposed to integrated where I give you four matches
and it's a Gestalt okay. You can't help but see the square.
You can't help it. You can't see it as four matches. You
can try to cover your — do what you can do. It's so demanding.
Do you see what I'm getting at? It's another — it's
the way we want to normally see ourselves as a totality.
But we can certainly do all the breakdown and there's
even a modern word for going the other way to the gestalt, called
emergence. That's a word that's kind of the opposite of
reductionism. You could also use that word for me and what I'm
talking about, reductionism but I avoid it for obvious reasons. No, I
guess my answer to your concern is I'm not so sure — let me put it
another way; I think I can by persuasion and the language I use effect
the way someone is going to view himself or herself as a donor of a
particular organ of their body, whatever that organ is. Quite
different when it's one organ, which you could conceivably spare,
certainly not the heart, or where you have two as in the case of the
kidney or one where you're going to lose part — or give up part of
your liver where there's only one liver. You can tell a different
— Wittgenstein I think would say, you can draw the picture you want to
the other two to adopt. You can — it's like when we get informed
consent in the West, we can write that up a certain way. We could
write it up another way and what we're looking for is some
understanding of approval of participation and, of course, the legal
worry we have about not having such a signed document, all of that.
I don't know if I'm answering this very well.
I'm sorry. I just see a lot more arbitrariness in this than
anything rigorous from what I said.
CHAIRMAN PELLEGRINO: Dr. Kass?
DR. KASS: Thank you very much. I think the theme
of this session, at least I would like to think that the theme of this
session is absolutely - might seem remote from the questions of organ
transplantation. I would like to think that Council members would
share my sense of the primacy of these anthropological reflections
before one takes up either the ethical questions or the particular
policy proposals. We get sort of two different approaches to this
anthropological question; one from the side of the corpse, the other an
argument for renewed — a different understanding of what the living
body is and the strong emphasis on the notion of Leib. And I'm
not — my own inclination is somehow to think that it is with the
latter that we get the greatest kind of mileage and sort of thinking
about what the living human person is, though Mr. Lynch, I was just
very deeply moved both by what you've submitted and the way in
which you spoke.
So my question is actually really for you. You say that
the dead don't care. And there's a certain sense in which that
is obviously right, yet you say also that the newly dead are somehow
changeling and I think you mean that they are somehow changeling for us
more than they are in themselves. And yet, I wonder whether it's
— this has some bearing on the question of how we think even about
extracting organs from cadavers which is not the heart of the matter
for the current discussion.
I'm not sure I — I want to press you on the suggestion
that they cannot be harmed in any way. There's a certain sense in
which they obviously can't be harmed. They're beyond feeling
and so on. On the other hand, a corpse can be disgraced. The
beginning of the Iliad makes that very clear. "The wrath of
Achilles sent the strong souls of heros to Hades but left themselves to
be the delicate feasting of the birds and dogs."
And therefore, I guess the question is, how do we have to think about
even the newly dead human body in such a way that we overcome the
sense that even the removal of the organs from such a body for wonderful
human good isn't somehow a violation? Because I think we need
to sort of deal with those intuitions before we can talk about going
further down this road or introducing incentives and I wondered
if you'd comment to that.
MR. LYNCH: Well, thank you for the question because I
think it goes to the heart of this matter or to the liver or to
the kidney or to the face or whatever else we endeavor to retain
and we don't have to go to third — you know, to ancient
Greeks for what can be done to bodies. We can go to the daily news
and the current war to find out how abhorrent it is. We can take
a death count but the bodies would be brutalized, beheaded, undone
in this way is despicable in a way that is hard for us to articulate
although we all sense and you are absolutely right to understand
that while the dead don't feel it, the living who are in custody
of the dead, either by kinship or by legal responsibility or by
neighborliness or by nuptials, whatever it is, the one who is responsible
feels custodial about the body and we ought to.
So I have seen for years as a funeral director in a small town,
I have seen how the body changes, how the dead change to the living.
And one of the reasons why wakes and funerals and their cross-cultural
variance throughout our history work is because it gives time for
the living to take on board what has happened to the dead. So that
you see, for example, on the first day when a family comes into
the funeral home to pay their, as we call them, final respects and
say their goodbyes or whatever we call that confrontation between
the living and the dead, the dead are still often spoken of in the
present tense. They are said to have the wrong hairdo as if it
mattered to them. Or they don't look exactly like themself
and the stillness is absolutely unnatural because there is no stillness
in life that is anything like the stillness of death. Anybody who
sees dead bodies knows this.
And a day later or two days later or three days later, when we
place that body in a hole in the ground or in a fire, you have to
take on board that that body has changed for the living. It hasn't
changed for the dead. There are some post-mortem changes but they
are a matter of boredom to everybody. But for the living, what
has changed is that it has ceased to be, so that you can put this
loved thing in the ground or in the fire. And we have to understand
that one of the reasons — I mean, one of the things that the
OPOs, if that's what we're going to call them, they have
to find some framework in which in the setting, the medical or bioethical
setting, that they are giving people the same time to connect those
dots so that they can say when it's okay for the organ to be
taken, when it's all right, when there's enough death resonant,
when the change is sufficient that that difference can be done.
And if we don't take that onboard, I think we do so at our
peril and we can keep looking at these low rates of authorizing
It is not mystery why few people in this culture witness
cremation. If you're body is burned in Calcutta or Bombay, it is
done publicly and ritually and the retort is open 24 hours a day and
the fire that lights the body's toe is brought from the home fire
by the first born and the whole thing is given a religious and
spiritual and cultural surround. And then the ashes are placed in the
river and the geography and metaphors and everything works together.
But here we don't see fire as purifying. We don't
see fire as releasing. Here we don't — we see fire in the Western
World as punitive and wasteful because when you're in trouble with
God, you go to hell where you're not freeze-dried, by the way, you
burn. That's what we were brought up with and so people have this
problem with fire, which is why everybody wants to be cremated, they
just don't want to see a body burn. But it's the same fire,
which is why we don't watch executions. We're all in favor of
whether it's justice or revenge or come-upins, whatever it is, we
want it, we just don't want to see it because of the changes we
But take onboard the fact that for the living in care of a
dead body they are already thinking those things, they are already
thinking, can they feel it? They're still worried about can they
feel the fire that — that's why they don't go.
DR. GAZZANIGA: Follow-up question; your colleagues
in the pet cemetery business, do they speak of similar mental
reactions? I'm trying to get to the fundamental mental mechanisms
here. Do they speak of similar kinds of grief and transcendent ideas
when they're dog dies and they go through this process?
MR. LYNCH: I haven't — I don't know much
about the pet cemetery business but love hurts, I think it was Bodolu
Bryant wrote for Roy Oribison to sing, famously, love hurts. Who was
it that wrote those three items on attachment, separation and loss that
we all stopped our doors with in undergraduate school? If you boil
them all down, love hurts is what he was trying to say. So whether you
love your AKC registered pain in the ass Burmese Mountain Dog or your
grandmother, or your spouse, love hurts.
CHAIRMAN PELLEGRINO: Dr. Hurlbut and Dr. Lawler.
DR. HURLBUT: Basically what I want to ask but I
want to frame it other words is, which zone are we in when we make a
donation or receive a donation and a live donation, but I want to
premise it by asking something a little deeper. You spoke in both your
presentation and in your writings in a way that both I felt was
clarifying and troubling about this question of the meaning of the word
"soul." Now, I mean, it's clear the word soul is a word
really for a mystery, for a sense of significance we have.
In my own tradition as a Christian, the word soul really
means the sense that we come from a benevolent source, that we have an
intrinsic dignity and that we have an eternal destiny. It isn't
really an explanation of things, of something so much as it is an
affirmation of something and it isn't a thing at all when properly
seen in deep theological discourse. I found it a little bit troubling,
the emphasis where the soul is only a word for something about the body
unless it is qualified slightly because I would, in another sense, see
the body as a word for something about the soul, in the sense that
there's some kind of an affirmation missing if you say the soul is
only something about the body. It implies that there's only
materiality and there's where the problem with this — you spoke in
I think a very interesting way about the transformation from
mathematical thought to biological thought. That's good insight
that historically has been — it seems to me now the danger in this
territory of transplantation is moving from biological thought to
molecular thought where we really are reduced to parts.
And just one final comment before you tell me which zone
we're in, it seems to me that the interesting analogy that might be
salutary in this overall reflection on the meaning of transplantation
would be to recognize that at least in the case of a live donor, well,
in the case of any donor, actually, live or dead, it's essential
that we harvest, so to speak or remove the organ and strangely suspend
its living nature by cooling it, if we have to transport it. We kind
of take it out of the zone of the living, but we know very well that
it's a part that cannot sustain itself without its presence in the
whole and so, it's almost as though you kind of take the organ out
of Leib and put it into Körper and then bring it back in Leib, and you
— anyway, you get my point. There's a question here of whether we
need to rethink something about what a body really is in relationship
to what we've been calling the soul and how transplantation might
be re-envisioned as something more in keeping with our sense of these
mysteries of the source and significance of our being in a transcended
DR. SPICKER: Well, I didn't have — I warned
over and over again, you see I'm warning myself, not to accept, buy
into or use the descriptive account of matter or body that's so
prevalent right down to that word you just used, molecular, I think you
DR. HURLBUT: In the sense of molecules aren't
warm and they aren't alive.
DR. SPICKER: Yeah, I understand but I guess what
I'm trying to convey is what la Mettrie really understood and he
wasn't the best telling of it either. It has to do with the notion
of organization. He finds — in one place he says, he finds no, we
would say contradiction or problem with the thought that matter
thinks. Not Descartes or the Cartesian picture that there's
thinking and one sense of being in matter body and another, but
there's no problem conceiving of a certain kind of organization of
matter that thinks and a certain kind of conceiving of the
reorganization of matter that gets buried or then later after it's
buried or that gets cremated and fired with or without additional —
The first thing, I mean, this is the center objection that
— so to speak, I'm not accusing you of an objection, it's
natural. You can come in here as a philosopher and expect it,
especially with theologians in the room. Right away there's
challenges to my way of thinking with others. It challenges, you know,
what must go on, must go on beyond the earthly material life, whatever
that former shape is. If there is something other than that, and
you've described that in the beginning of your comments when you
said things like eternal and affirmative and so on.
You know, I don't mean to digress but you remind me of
the same problem Darwin had. Isn't it the same thing? He was such
a good man and it's so sad about the impact of his theory on his
sister and her strong religious views. And we have people who accept,
of course, or we wouldn't have had this whole debate with creation
and getting it out of the science class and so on if we really
didn't see there was sound evidence for the Darwinian side of it
not a mere theory. It's just a bad way to put it.
So I see that analogy. For me it's exactly the same kind of worry.
But the Darwinian position still allows us theos — it allows
for divinity in the universe, perhaps not the monotheistic God,
perhaps not the gods of the Greeks, but some kind of transcendent,
a force in the universe if we can use this word. You used the word
mystery, I use it right back at you. You know, what's good
for the goose is good for the gander. What we don't know, we
have to sometimes respect that we won't know. But it doesn't
force — it just doesn't have the force to compel me to
capitulate to anything like the Cartesian position. It just simply
doesn't may more than Darwin had to somehow abandon his view
because the theologic expected a lot of problems.
God was supposed to intervene at different times to produce different
species. He was able to show us it just doesn't make any sense.
It's not necessary. I mean, it made sense but it wasn't
necessary and that, of course, is the heart of the debate with the
creationists. That's really the heart of the debate or discussion.
So I'm not trying to pontificate, an interesting choice of words,
not trying to pontificate on this position, just that one needs
to be prepared for much better thinking about what we mean by body
and that's why I like Leib. I don't like our English word
because it draws us back to this narrow or naive or simplistic view.
I say that that living human runner is Leib and I say
that's what there is, and there isn't some cognitive entity, a
machine grinding it. This was Kant's problem. You know, Kant is
genius, he's genius. In other places he give way to — I've
got some great quotes I think in one of the papers, some of you read
it, where Kant says if we weren't left and right-sided, if we
didn't have asymmetry, we couldn't know where we were with
respect to the astronomy, we couldn't tell, east, west, north and
We might get two but we wouldn't get the other two if there
wasn't a feeling of difference, he says, left and right. That's
the philosophical anthropology, that's the body, the living
body. Even in Kant, see, Kant — I've just got to say
this for a minute but here's that tripod, there's one, see
it there, see this little tripod, that's all you are. This
stuff, this — what's that word they used in that movie,
pulp, which is — you said it in your talk, we're real
simpatico, we're just pulp. Dig a little hole here, see and
just lift out the brain and all the central nervous system and that's
Stuart Spicker, see? That's the modern view, that's really
what's driving these guys, okay. That's absolutely crazy.
It's the runner that's who he is. That's the full runner
and right down to his fingertips not just the nerves in the fingertips.
And none of this — this is all getting lost. If you want
to call it the self or the person I'm watching those words,
too, because they're fully loaded back into Cartesianism that
really worries me deeply, but I'm really worried about the neuro-sciences
of the 21st Century, they've really got me crazy.
Okay, they've got me really crazy because they're going
to really finish this off, except for our esteemed colleague here.
I thought he was the enemy until I read his book and then I realized,
no, we — by the way, what will go down in infamy is his page
101. It's the one about responsibility. It has to do with
being human, it has nothing to do with brains so to speak.
CHAIRMAN PELLEGRINO: Excuse me, Dr. Lawler.
PROFESSOR LAWLER: Everything you just said made me a lot
more confused. I agree with you that we shouldn't think about
the body and soul as separate things in some Cartesian way. I can
go along with that. On the other hand, isn't it true that Mr.
Lynch is a very poetic and moving and beautiful writer who is expressing
his soul. That is it's a mystery, that one animal and one animal
only is born to die.
DR. SPICKER: Is what —
PROFESSOR LAWLER: Is born to die.
DR. SPICKER: You mean, knows will die.
PROFESSOR LAWLER: Knows will die and so understands
life in terms of death and so forth. And so has — is moved by and has
opinions about the dead and so forth and what's wrong with Darwin
is, he has no account of either the importance of a particular human
person or why particular human persons think particular human persons
are important or something along those lines. So from this point of
view, Mr. Lynch and his great presentation and his great writings, I
think is not value neutral on cremation finally because it's a form
of modern death denial.
As TV screens get bigger, cemeteries get smaller and just
like with baseball games, we now need to be entertained between
innings, cemeteries have to have some other things to attract us
besides dead people. So I think his —
MR LYNCH: Can I respond to that for just —
PROFESSOR LAWLER: Yes.
MR. LYNCH: Actually, with regard to cremation I am value
neutral and proper disposition is proper disposition, whether you
burn, bury, blow out of a cannon, leave it for scavenger birds,
I'm indifferent to that. What I'm interested in is what
happens to the — not what happens to the dead guy, once he's
disposed of but how the living get him to the brink of that disposition,
that's what —
PROFESSOR LAWLER: So you're value neutral on
the literal fact of the burning, which is perfectly reasonable, but
you're not value neutral on how we look at cremation.
DR. SPICKER: How we do it.
PROFESSOR LAWLER: That's exactly right. So
there would be a way in which it could be done well.
DR. SPICKER: Yes, yes, done well elsewhere.
PROFESSOR LAWLER: Right, and there might be
something in fact, creepy about open caskets that's unique to us
but that's not the subject for today, except to say I sort of agree
with you that perhaps we can't harm the dead but it harms us not to
be moved by and think about the dead in the proper way. So it harms us
to think in terms of procurement and harvesting and all that with
respect to organs but we need not think of organ transplantation that
way. We can think of it in terms of a gift of the person that we
remember in terms of the life of someone else and no doubt there are
other ennobling ways of thinking about it. So finally, a lot of our
concern of transplantation would be in terms of the way we think about
human beings in general now and the scientific ability of transplant
being sucked into that. And so what we have to do is understand our
scientific ability to transplant to save lives or to extend lives to be
fundamentally a good thing as long as we think about it in the proper
CHAIRMAN PELLEGRINO: Thank you, Peter. I think we
have reached the end of our time so that you'll have a lunch
period. We would be back here at 2:00 o'clock, please. Thank you
both very much, Dr. Lynch and Dr. Spicker.
(Whereupon at 12:43 p.m. a luncheon recess was taken.)
SESSION 3: ORGAN TRANSPLANTATION AND PROCUREMENT—THE ETHICAL CHALLENGES
CHAIRMAN PELLEGRINO: I think
we're ready to go. For those of you who have been good enough to
come on time, we will start as close to on-time as possible. We're
still a little bit late. Can I have some quiet in the back of the room
please. Thank you very much. I'm glad my voice is carrying
there. Thanks for the power.
This afternoon, we're going to have a
discussion of two papers which are in the procedure book. We'll
start by having one member of the Council, our newest member, Professor
Schneider, open up the discussion of both of these papers and then
we'll spend the rest of the time with the Council making comments
or queries as they see fit. Professor Schneider.
PROFESSOR SCHNEIDER: Thank you. I
was just looking around. There is one author and the other author I
assume is soon to be here.
CHAIRMAN PELLEGRINO: He'll be
back. He promised to be beamed down.
PROFESSOR SCHNEIDER: With a name
like Meilaender, I assume he's very prompt ordinarily.
PROFESSOR MEILAENDER: I'm
PROFESSOR SCHNEIDER: There you
are. I'm sorry.
PROFESSOR MEILAENDER: I just
didn't bring my thing along.
PROFESSOR SCHNEIDER: I kept
looking at the empty chair. I was enormously stimulated by both papers
because they were so thoughtful and they made me think and I want to
talk very quickly about some of the things that they made me think
about and to ask for your help in understanding the papers better.
The first thing that struck me about the
papers was how enormously powerful they were rhetorically. There is
language that is mobilized here that seems to be at the outer limits of
the serious. There are phrases like "destroying ourselves in
seeking to do good," the possibility of "our being
diminished, dehumanized and corrupted" and so on. And I'm not
entirely sure that I understand where problems at that extremity are
actually materializing in the debate about transplantation.
As I looked at the arguments, I could see
that carried to some possibly imaginable extreme problems like this
might be arising, but I couldn't see that they were anywhere near
to actually arising. For example, there was considerable discussion
about the consequence of our being embodied and the fear that
transplantation somehow endangered the meaning of that. But it was
never possible for me to understand how the factor bar being embodied
in the actual context in which transplantation occurs has actually
created any kinds of problems.
To take another example, I agree that death is ultimately not
preventable and that you can't try to exert all of your social
resources for solving all of the problems that death presents.
But it seems to me that we're a long way from reaching the point
at which we would say to people "Well, you're dying; death
is inevitable and we need not agitate ourselves about preventing
it in this case."
Finally, I'm happy to agree that there
are limits on altruism, but it's not clear to me why those limits
on altruism are being approached here. In fact, if I were to try to
think about the problems the country has, reaching the limits of
altruism does not seem to me to be very high on the list and a
situation in which it is possible for the country to agree that
altruism is a good thing and to see people practicing it in a fairly
dramatic way I think is a socially very desirable sort of thing.
I'm certainly enthusiastic about the
idea of looking, as Dr. Kass was saying, at these questions
anthropologically. I think my difficulty is that I don't
understand the anthropology in the same way that I think a lot of the
people who have been talking so far today do. My own contact with
these issues comes partly from having done research with dialysis
patients and partly from familial experience and I guess I see a lot of
these kinds of questions in a much more cheerful light.
For example, there was a good deal of concern in the papers about
the prospect that people would be coerced into donation. My reading
of the empirical literature suggests that coercion has turned out
to be far less of a problem than one might in principle anticipate
and there are a lot of reasons for this. One of them is that when
people make decisions about donating organs, they don't think
long enough to be coerced. They tend to make their decisions with
such rapidity that they've decided what to do by the time the
question has been posed. Informed consent doesn't work with
donation of organs because people have already decided one way or
the other to donate their organs and the fear of intrafamilial pressure
according to the empirical literature that I've looked at also
does not suggest that very much of this coercion goes on. I have
to say that if a certain amount of pressure goes on to recognize
your obligations to help members of your family, it doesn't
unduly concern me a priori.
One more issue along these lines of the
facts of the anthropological situation: far from feeling that
they've been coerced into doing something, the record suggests to
me that people who have donated organs feel that they have benefitted
enormously from it, that they very often feel that it's the most
important thing that they have done. I'm talking about living
donors and the empirical studies of them suggest that they wind up
being happier people than the average of the population because of
their donation which has changed the way that they think about
And I do think that it's also worth
saying that one reason you might be interested in transplantation,
whether it's a crisis or not, and I must say I don't have any
idea what the word "crisis" means and I propose not to use it
if possible. But one reason you might be in favor of transplantation is
because of the evidence that in many kinds of transplantation at least
the transplantation is cost effective. That is, that you get more
effective treatment of patients for less money.
So I appreciated the rhetorical and
argumentative force of the papers, but I'm still not sure that the
papers ever actually go to the point of saying not it is possible to
imagine a world in which things have come very badly apart, but in
which we are actually in any danger of reaching that point.
CHAIRMAN PELLEGRINO: Thank you
very much. Eric and Gil, how do you wish to respond?
MR. COHEN: Thank you very much for
the comments. The most forceful point I take, and let me see if I can
respond, is not seeing as clearly as you would have liked perhaps the
dilemma that we confront in the current practice of organ
transplantation and even more deeply I think the dilemmas we confront
as we think about possible reforms and way to try to boost the organ
supplies. Let me see if I can quickly paint a clearer picture of the
dilemma than I did perhaps for you in the paper and hoping that Gil
will help me out.
I want to focus on the issue of living
donors because I think, to be frank about it, that's where the
action is. We've done a very good job in as much as our goal is to
increase the supply of organs with the collaborative that's been
going on over the last few years and improving the rate at which we
retrieve organs from the deceased who are eligible to be organ donors
and there is frankly simply a limit to the number of deceased owners
that we'll ever have. So inasmuch as we face the prospect of
hundreds of thousands or even millions of people in end-stage renal
failure who are in need of organs and if we think that is a crisis that
needs to be ameliorated, the only place we can look to ameliorate that
crisis short of finding other alternative medical approaches to it is
to living donors.
Even before you begin to think about financial incentives and
the issue of commerce, the practice of procuring organs from living
donors "test the outer limits" to take a phrase that you
began with of the medical ethic. I think it's a testing of
the outer limits that is frankly justified in many situations.
But it is a novel case where the doctor is cutting into a healthy
patient and where the person only becomes a patient in the first
place because of the action of the doctor. It's kind of an
inversion of the typical encounter between the patient and the doctor.
Usually patients arrive on the scene sick and wants the doctor's
hands to help them. Here the patient arrives on the scene healthy
and it's only the doctor's hands that put them into any
kind of a jeopardy.
Now in the kidney case, the risks are fairly limited, more severe
as I understand it in the liver case, but Dr. Arthur Matas who came
and spoke to the staff who is a very accomplished kidney transplant
surgeon and also a very articulate defender of the case for having
financial incentives with a view to trying to increase the organ
supply described the surgery of procuring the kidney from the healthy
living donor as the most terrifying surgery he's ever done.
He said it's not the most complicated. It's not the most
technically difficult. But it's the most terrifying.
Now I think it's in general and in
many cases a very good thing that he does this terrifying surgery, but
I think it's at our peril that we ignore the fact that we do
something a little bit terrifying or something that should terrify us a
little bit when we see the healthy as a potential source of rescue for
When you begin to move to where we are,
which is people calling for potentially significant changes in the way
we do things - namely, going from a system that is organized around the
principle of gifting to a system that is driven to some degree by the
financial incentives that might be given to living donors, we simply
can't ignore the fact that the sellers are going to be the poor,
predominantly. Most well-off people are not going to sell their organs
as a way to buy a third car. The people who are going to sell their
organs are going to do it largely, I think, as a kind of act of
Now, there's something strange about
worrying about the exploitation of those whose situation is already so
desperate that in a certain sense they live in a state of
exploitation. But to talk about financial incentives of the poor to
sell their organs changes something which now in many cases and
hopefully in most cases is a kind of act of magnanimity - an act as it
confers, as you say, great benefits on the donors to an act of
It's clearly been sort of free market
conservatives who have made a rigorous case for the buying and selling
of organs, some even saying that this would simply be a way of improve
the quality of life of the poor. But even from a conservative
perspective, even from the perspective that takes self-reliance
seriously as a virtue that all of us need, but the poor, where it's
possible, need especially - one is not self-reliant by selling a piece
of one's body. Right? The constant critique that everyone profits
in some way from the organ transplantation system except the donors is
certainly true and can't be ignored and the commercial dimension of
this certainly exists.
But those who are compensated are
generally compensated for professing something. They're
compensated as professionals, as doctors, as nurses, as professionals
working for the organ procurement organizations. The donors who might
potentially be compensated are not being compensated for any profession
they have, but for a part of themselves, a part of themselves that has
turned into a piece of alienable property.
So I guess the point of this and I'll close and turn it over to
Gil is: we can't ignore the dilemma in the practice as it currently
exists. We can't ignore obviously the great hardship of those
who suffer for organs, the great virtue and goodness of the physicians
who give them hope, of the family members or generous donors who
give them the organs that make that hope possible and in general,
I think organ transplantation including the living donors is better
rather than worse. But we also ought to still be a little terrified
at the practice as it currently is and we ought to recognize how
much more terrifying it might become if we turn it from an active
magnanimity into an act of desperation. I think that's really
what the heart of the debate at least about the issue of financial
incentives turns on.
PROFESSOR MEILAENDER: Let me add
just a couple things and then we can see where you want to go. The
"outer limits of the serious" is exactly what I would
encourage you to think harder about, not in the sense of where we might
go, but what the inner meaning, the true meaning, of certain events is.
Let me just comment on a couple particular
things that you said, but then come back to what I took to be the
central thing that I was trying to accomplish which I may have failed
to accomplish because it didn't seem to come through very clearly
to you. But I think a slightly more careful look at some of the things
I said in my paper would be useful. For instance, you moved very
quickly from saying for someone death is not preventable to hence we
need not agitate ourselves over that, whereas I tried to take some care
to work through the two angles from which we must always look at death,
the one angle from which of course it is always an existential,
deeply troubling problem, another angle from which that simple fact
can't become in and of itself a crisis, so that there wasn't
any easy move from the one to the other. I think the trick is to learn
when and where we need to talk in one way and when and where we need to
talk in the other. I'd say that.
The limits of altruism issue is not a
question about whether we have so many people performing altruistic
acts in our country that we should sort of worry that maybe we need to
tamp it down a bit or anything like that. That wasn't the issue.
The issue is whether there might be some acts which, though altruistic
in spirit, nevertheless undermine the integrity of the body, the lived
self in the body. That's the issue. It's not a question about
whether there's a large percentage of altruistic people around in
our society or anything like that. So that's the issue and I think
once again your way of reading it missed the kind of question that I
was concerned about.
And that would bring me back then to what
I thought at any rate I was fundamentally trying to do which I think
does make contact with what people are currently talking about and
arguing about in connection with transplantation and that is: I was
trying to understand why one might turn in the direction of gift rather
than commerce and why in fact we have in the past turned in that
direction because the pressure to turn in a more market direction is a
recurring pressure and it's a fairly strong pressure right now.
That's what I was trying to understand
and I don't think it will be sufficient just to say this is what
we've done, here is how we've done it in the past, here are
what some authorities say. I wanted to try to understand why it is
that thinking in terms of gift might retain a certain sense of the
organ. It's not just a sort of part or a thing, but the self that
is given there and why that's lost in some ways if we think in
terms of commerce. That doesn't seem to me to be out of touch with
where discussions are going with respect to transplantation. On the
contrary, it seems to be right at the heart of one central point.
Now I may have done a lousy job of trying
to do that. That's all possible, but that seemed to me to be the
chief point that I was trying to get at and to be honest to suggest
that that's not at the nub of some important issues in
transplantation right now, I would really find that astonishing. I
just don't believe that. I think that would be mistaken. So my
apologies for not getting it clear, but that's the point and it
seems to me that that's a point which unless we think through and
try to understand we really won't be a position to say much
that's useful about the commerce issue.
PROFESSOR SCHNEIDER: If I may ask
one question, I did not understand either paper to be about the
specific question of selling organs. I understood it to be much more
directly about the very idea of transplantation itself. Did I
PROFESSOR MEILAENDER: Yes, but
there's an important — No, you did not misunderstand what the
paper was about in one way, but there's an important part where
having talked a little bit about what Richard Epstein had to say at our
last meeting. I note from something that he wrote elsewhere that he
points out that the strongest arguments against turning the organ, it
wouldn't be organ donation anymore, but the organ donation process
into some kind of market system are arguments that in fact might be
taken to be arguments against transplantation more generally and that
therefore that's why I turn to thinking through transplantation
more generally and trying to think through the way in which the idea of
gift is at the heart of preserving some sense of the self that's at
work there in a way that it wouldn't be preserved if we turned in
the direction that Epstein was recommending. So, yes, I turn to a
discussion of transplantation more generally, but out of that
PROFESSOR SCHNEIDER: Out of the
concern about the effect of turning this into a market?
PROFESSOR MEILAENDER: Out of the
sense that you can't answer why you shouldn't turn it into a
market without asking some more basic questions than just that.
PROFESSOR SCHNEIDER: Let me just
say one other thing. It's not at all clear to me that compensating
people for, and this is to respond to what Eric said, that compensating
people for organs means that you're getting organs sold by poor
people. I realize that's the way it works in India. But as
I've been looking at some of the literature on the difficulties
that donors face, the difficulties they face are often economic
difficulties. They're the difficulties that arise out of not being
able to work for whatever time it takes them, sometimes a fairly large
amount of time, to recover from the surgery and I take it that one of
the possible responses is to say we're not paying you for your
organ, but we are trying to keep you from suffering economically for
the gift that you've given.
MR. COHEN: I think that that's
an important distinction to keep in mind between ensuring that those
who want to give as a generous act don't incur insurmountable
economic burdens in giving the generous gift. That's different
from paying people a price for their organ as a way for them to benefit
themselves economically. I think that's a distinction that can be
preserved and I think they have different meanings.
CHAIRMAN PELLEGRINO: Other
comments? Questions from the Council? I have two people, Peter and
PROFESSOR LAWLER: I agree that
buying and selling is where the action is and I agree that buying and
selling is a terrible idea and you don't have to get way
metaphysical in order to reach that conclusion. It's — I guess I
can't see how it could be done without avoiding horrible abuse. To
give a dumb and flip example, our country has lots of undocumented
aliens and states are electing to give them welfare. You can imagine a
scenario where someone would say "Welfare? You've still got
two kidneys!" There would be the expectation that your kidney
might be understood as part of your net wealth or something.
But having said that, Gil's paper in particular, I agree with
you, does seem to be an argument that causes us to reflect upon
all transplantation and maybe collapses one distinction I would
want to preserve. He says on page 14 that especially with reference
to the footnote that criticizes a great thinker that if I give my
dead kidney, my cadaver kidney, in advance I'm giving a gift
of my very person as if I can't separate my dead kidney from
my being. It's a tough question whether I can separate my live
kidney from my being, but my dead kidney is not me. So in a certain
sense, one of the smallest gift I will ever give in my life will
be my dead kidney because it's of no use to me.
So we were talking at length in a certain way I'd be more
generous if I'd bought you dessert than donated my dead kidney.
Although when I read this, Gil's reflections, I think a donation
of a live kidney has to be an act of love and nothing short of an
act of love. I don't think I would do it otherwise. So I might
step up to the plate like the speaker said this morning for one
of my own relatives, but in general, I don't think I would do
it because I think it's a powerful argument that it is a gift
of my very being. My dead kidney, I want someone to tell me what's
the big deal.
CHAIRMAN PELLEGRINO: Dr. Hurlbut.
DR. HURLBUT: The issue that keeps coming back to me was
brought up this morning by Leon in the sense that there's the
word "crisis" and "shortage" that should be
introduced into this equation and it relates in a special way that
a personal element of what is involved in donation.
I mean I think you bring it out, but maybe you could say more
about this. The idea that there's a shortage or a crisis, it
seems to me those are the wrong words. It seems to me it should
be presented as more an extraordinary new possibility or an opportunity
to engage a new relationship between healthy individuals and those
who are in need of cure. And to me, that implies the difference
between the word "opportunity" and "obligation"
and as soon as you start saying there's a shortage or a crisis,
there's a kind of obligation that seems to violate the very
source power of the goodness of this that is the actual lack of
an obligation but the act of super abrogation that's implied
It engages a different part of the person and in that sense, it
carries a certain beauty, truth and coherence of what we see a person
to be. As soon as we start walking the world feeling guilty because
we haven't donated, I think we're going to weight down natural
life with a new sense of obligation that would not be good. But
if we don't do that we could still lift up that notion that
there's an opportunity for a free act of genuine giving and
that seems to me not to use a bad pun but the heart and the soul
of this whole matter that there is an engagement of the best of
a person in this somewhat unnatural process.
PROFESSOR MEILAENDER: I didn't
know if you wanted us to respond at all.
CHAIRMAN PELLEGRINO: Yes, I do.
PROFESSOR MEILAENDER: Okay. Just a
quick comment. First, a quick comment to Peter Lawler. Again, you
said my dead kidney is not me. How can a man who sat here and listened
to Tom Lynch this morning say that quite so straightforwardly? I mean
obviously in some senses it's not, but there are other senses in
which it seems to me you ought not quite say that. Then, Bill —
PROFESSOR LAWLER: Could I ask what
PROFESSOR MEILAENDER: Pardon me?
PROFESSOR LAWLER: Could I ask what
those senses are?
PROFESSOR MEILAENDER: Yeah. They
want that kidney from you while you're a changeling in the eyes of
your loved ones and it is some sense therefore you that they want.
PROFESSOR LAWLER: But they
don't want, in some alien sense, that they're coming after my
PROFESSOR MEILAENDER: No, I
don't think I said that.
PROFESSOR LAWLER: No, but I have
given this thing.
PROFESSOR MEILAENDER: Yes, I
understand that and I didn't say that you shouldn't. I just
was uncomfortable with the — Well, I was originally uncomfortable as
you know with your sovereign authority language with respect to it.
But in general, I would just want to be careful and cautious about
disassociating one's self too much from those remains.
But then I was just going to say, Bill, I
think I agree with the direction you're going, though worry that I
had in the paper was that on the one hand medical progress makes
possible something's that remarkable for people. Then because it
has done that, we begin to think of it as a kind of entitlement that we
ought to have and then it's a crisis if we can't have it and
the use of that language, the reason, I mean there may be a lot of
reasons, the reason I back off from the crisis language is that I just
think that that language encourages us to do things, at least to think
about doing things, that we would not think about otherwise, tinkering
with definitions of brain death in order to get what we want, seeing
the death of patients becoming, as I said in the paper, a technicality
that we need to see to in order to get there, restructuring death in
ways that seems less than humane. Maybe any or all of these are okay.
I'm happy to argue about any of them, but I think that that
language that turns it into an obligation begins to encourage all those
things in ways that I think one ought to at least worry about.
CHAIRMAN PELLEGRINO: Dr. Rowley.
DR. ROWLEY: I have three questions and comments. The
first is a whole lot of this involves insurance and health insurance
in one way or another. And as has been commented on this morning,
it was clear that the poor and, if you will, the minorities of various
sorts and the financially disadvantaged are the ones that are, I'm
not saying this correctly, but are disproportionately on the waiting
list and the people who can afford to take care of themselves are
amongst the advantaged and less constrained by what they have to
do and the kinds of problems that they face. So I think we have
to be straightforward in understanding that the lack of universal
health insurance in this country complicates the whole situation
enormously and I don't think we've faced that issue very
And the third, not the second, issue that
I have is with Dr. Pellegrino and just where are we going with this
discussion of transplantation because I remember being part of the
Council under Dr. Kass and I think it was in 2003, but I can't be
confident about the timing, but we did have a discussion about
transplantation. So you may not be prepared to answer and I understand
that, but I think that as a Council member I wonder about that.
And the specific question I have for Dr.
Cohen particularly because in his paper he refers to the IOM report is
the IOM was mainly concerned with organs from deceased individuals and
as I recall just a chapter and I realize we're going to have a
report this afternoon from the Chairman of the committee that wrote the
IOM report, but the IOM report is mainly about organ donation from
deceased individuals and, Eric, you made the statement just now that
the only place to procure additional donors of kidneys is from the
living and I think the IOM report mainly focused on how we could
improve donations, if you will, of kidneys from the deceased. So they
seem to be in direct conflict. So I wonder if you would clarify your
statement as to why you think that the only way to increase organs,
kidneys, to be specific is from the living rather than from the
MR. COHEN: Let me see if I can be
clearer than I was before. I don't think there's no room to
procure more organs from the deceased. I do think we probably can by
improving the procedures, by considering some of the recommendations in
the IOM report which we'll obviously hear more about later today.
We might be able to increase the number of organs available from the
deceased. The point I was trying to make is that I think we're
already, different people have different numbers, but over 50 percent
is what's called a conversion rate which is the number of eligible
deceased donors whose organs we actually procure.
Now presumably there is going to be some
portion of people for their own reasons, perhaps good, perhaps not
good, who actually have substantive reasons why they don't want to
be donors which means, while there's room for improvement,
there's limited room for improvement and there's a limitation
that is grounded in how people die which makes them eligible or not
eligible to be donors. So when we take that fact and then juxtapose it
with the numbers we saw this morning about the size of the population
that has or might have or will have end stage renal disease, the point
I was trying to make is that inasmuch as we see this as a crisis that
needs to be ameliorated the only way we'll ameliorate the crisis is
to not only try to increase the organs we can get from deceased donors.
But to try to increase significantly the
organs available from living donors and that's an area where there
isn't as much of an inherent limit because any healthy person in
theory could donate a kidney. We're talking only in the kidney
case and to some degree in the liver case. So I didn't mean to
suggest that there's no room to get more organs from deceased
donors, but I think the real debate that we're going to confront,
not the most important debate ethically, but the biggest practical
debate, is going to be about policies regarding living donors.
DR. KASS: Excuse me. I wanted to
speak primarily to Gil's paper and begin with my praise for the
form of it and the shape of the argumentation leaving aside some of the
details. First to say, I think Gil is absolutely right that this
Council at least ought not to — The discussions that we're having,
Janet, may very well be triggered by the fact that even in the three
years since we first talked about it, the "shortage of organs and
the need to do something about it" has become really a much more
lively topic. There are articles about it in lots of places. The
passion that was generated by this discussion that we had at the last
meeting indicated this seems to be a problem that you would have to be
an ostrich with your head in the sand to ignore these days.
Nevertheless, if this Council wants to do
its job, I think Gil is right in saying that we might take that as the
point of departure for our reflections, but we have to step back and
begin to think about the human significance of what these innovations
produce so that the place that he would like us to begin is not to
simply begin in the middle of the things taking the shortage for
granted and its place, but to begin prior in an earlier place. And he
tries to do that for us by thinking, to begin with, about the limits of
how we think about mortality as such. Carl Schneider's
qualification, I think, Gil would probably accept and then to encourage
us to think about the strangeness of having started down this road in
the first place of what it really means to start to look upon the
embodied whole which is our life as also a source of resources in part
to benefit other people and the reluctance to start by thinking about
the living body as such a resource naturally to go in the direction of
And there I think he does well, forgive me if I'm simply rehearsing
what strikes me as the important parts of this, reminds us that
in the first instance the dead body is not rightly seen if it's
seen only as a natural resource for the benefit of others, but is
the mortal remains with which the family and associates have to
deal and that in all kinds of ways even if you can't harm the
dead person, there is at least and especially in this limited period
of what Bill May beautifully called "the newly dead,"
I don't know whether we've all read that article or not
but it should be out amongst us for rereading, that this all too
much resembles the person whose life this once was for us to abstract
from those considerations and say "Ah, here is a kidney to
save Patient X down the road."
How have we managed to get ourselves to
the point where we've, as a culture, accepted this practice
overcoming certain kinds of scruples and reluctances? Gil gives a kind
of an account that we've done so not because we think natural
resources in the absence of objections we will harvest them or collect
them, but we've done so because we see that there is the
possibility of gifting, even under these circumstances. And that the
giving of the organ is in a way a gift of oneself even when one is no
longer here to present that gift and I think it's terribly
important when we think about the new proposals to remember why it was
we've adopted the practice of giving as opposed to the practice of
routine salvage, which is what the French and the other Europeans
Now faced with a kind of critique of this
practice because these moral scruples seem to be the major obstacle to
finding the necessary organs to shorten the list, there is I think a
great deal of pressure to encourage living donation and since living
donations are odd, I mean for a loved one it's easy but how to get
more people to come forward, that's where it seems to me where the
major push of the financial incentives is today. They're modest
proposals for funeral expenses and things of that sort to try to
increase donation from the deceased, but in public meetings and in
publications, we will hear from Dr. Hippen I think later today, more
and more people are thinking that the only way you're really going
to address this shortage is to begin really to offer financial
incentives and even a market in organs.
I guess I'm inclined to say that
unless we go through a kind of an analysis of the sort that's here
and see if we can either defend or find fault with the justification
for the system which has been in place from the beginning of
transplantation and codified in the 1984 Act, we will not be in a
position to justify or think clearly about these new proposals which
begin not with anthropology or not with these larger questions but
begin with the simple fact people are dying on the list. What are we
going to do about it?
So I would like very much to endorse the
paper. I have some minor difficulties with this or that, but as a form
for us to think about this question, I think this is the right shape
and I guess my invitation, Mr. Chairman, would be to my colleagues not
so much to Gil whose paper this is. Are there weaknesses in the
development of this argument which seem to me to be primarily a
justification of the practice we now have made with some fear and
trembling and worrying about that there are too many potential
transplant surgeons hovering over the family close to the time of death
and all of that. He worries about those things, but he's not
asking us to go back on that. But are there difficulties with the form
of the argumentation and in particular with the substance of it? But
that would be my encouragement to my colleagues to see whether he
hasn't provided us with at least the beginning of a framework with
which to stand before the new proposals one way or the other.
CHAIRMAN PELLEGRINO: Thank you.
DR. KASS: Sorry to be so
CHAIRMAN PELLEGRINO: Any further comment on Dr. Rowley's
question? To me which I think depends very much on what the Council
thinks about the question mark at the present moment, as Leon has
pointed out, you've started a lengthy discussion, a good discussion.
As we look back at the record, it's kind of unfinished business
in view of the fact so much has happened since the things you've
So the question really is is there
something that we can contribute of a positive nature that has not been
approached and that's the question before us and the reason for the
papers for the rest of the program after which I think we'll take a
fresh look at it and try to give you a more specific answer. But I
think I'd like to hear what the Council members feel about this.
It is a very urgent, ethical and social problem and it's going in
directions Leon has very capably and eloquently outlined that will
change the atmosphere and I think I would like to know how more of you
feel about it and I think the two papers we've had were meant to be
a stimulus to you to see in what direction perhaps we ought to go. One
has one's own ideas, but I'd like to hear yours.
I want to emphasize our doing that this
afternoon and the rest of today if we can because we look forward to
the summer if we're going to make this a major project to trying to
get it in its final form so that in the fall you can have something
very concrete to look at or we may not undertake it if we decide that
after we hear the internal medicine report or something that there
isn't anything significant that we can add. I happen to think
there is, but I'd like to open it up to your comments, Members of
PROFESSOR LAWLER: I agree with the
DR. KASS: And excuse me. I just
want to be sure I get both of you.
PROFESSOR LAWLER: Okay.
DR. KASS: Go head, Peter.
PROFESSOR LAWLER: I agree with the general sentiment expressed
by Leon and Gil that the metaphor of the crisis produces the thought
that there needs to be an immediate response, decisive action, executive
action. But when you think about it, this is a crisis if it is
a crisis specific to a very definite stage of medical technology.
Not so long ago, we couldn't do transplants and presumably,
and I'm no expert on this, somewhere not that far down the line,
we will no longer need to do transplants because we'll have
xenotransplantation, some kind of regenerative medicine, artificial
kidneys and things I'm not capable of even imagining, but will
surely be there.
And so the danger is in crossing boundaries now that would apply
to other areas reacting to a crisis is relatively, although real,
it's a real problem of people who will die because of end stage
renal failure and the inadequacy of dialysis and all that, but there
is the danger in over reaction without sufficient reflection and
we may be the guys to do the reflecting on that. For example, a
rough parallel is an issue of euthanasia. The two arguments for
euthanasia that were nontrivial would be tremendous depression and
horrible physical pain. We can now deal with the depression and
the physical pain and the same way to cross the boundary and enter
into the buying and selling of body parts in response to this alleged
crisis I think in the long term we would regret because of this
uncertain applicability down the road and the inability of preventing
abuse and all that.
I think you can reach those conclusions
with some reflection, with deep reflection, and the character of
embodiment and all that, but there's a lot of good common sense
that falls short of deep reflection which is also in Gil's paper.
So I agree with Leon that this is something we are well equipped to
take up and we should take it up.
CHAIRMAN PELLEGRINO: Dr. Bloom.
DR. BLOOM: Unless there was some a
priori decision that you all made to look at this focused issue, I
would want us to take a broader look because it seems to me that while
there is certainly a shortage of organs to transplant than there is to
people who have end stage renal disease, if we only look at that piece
of the puzzle, there is always going to be a shortage and it seems to
me we have to look at the causative upstream events that we should
speak out about with equal vigor which is obesity, Type II diabetes and
secondarily renal disease which are items of self-responsibility.
These people got themselves into this problem. Maybe they had genetic
vulnerabilities that got them further down the path than others facing
the same metabolic and environmental circumstances might have.
But if we only patchwork this issue
without taking a look at the bigger issue of what causes them to start
down this road to disease and even broader issues than that in terms
of, to me, self responsibility for your own health, is a major thing
that we should speak to because it's unethical for us to pretend
that medicine is going to solve all bodily ills and we have to start to
convince people or it's always going to be 20 plus years down the
road before preventive medicine pays its due bills on this society. If
we learn anything from the genome in terms of vulnerability factors,
it's not going to eliminate self responsibility and there's not
going to be always a magic pill or a magic organ or a magic cell
that's going to make somebody well again after a life of abuse. So
in response to Leon's comment about the form of Gil's paper, I
would see an equal stream be devoted to the upstream events for which
this is a partial solution downstream.
CHAIRMAN PELLEGRINO: Thank you
very much. That's very helpful. Other Members of the Council?
DR. GÓMEZ-LOBO: I want to back up
a little bit again, but in another sense, not in the medical sense as
Dr. Bloom wants to. Many of these issues were completely new to me in
many ways. So I'm trying to think through the arguments and the
reasoning behind them. Now I think that the Council has helped me a
lot in this discussion of the crisis language because surely it's
one thing to say there's a crisis and we should do anything to
solve it and a different thing to say there's a shortage here which
may be caused by other reasons, but on the other hand, that may not
generate entitlements or rights, the kind of thing that Bill was
pointing to. So I found it very useful to tackle these problems from a
Now what have I gained from this
discussion right now? At least the following. The death of people on
the waiting list is of course deeply painful to me, but equally
worrisome is the cutting through the healthy body as Eric has pointed
to. So it seems that the altruistic motive at the moment is the only
thing really morally holding the practice in place and that's why
it seems to me that that should be a matter of further reflection
because that's exactly where the big differences are going to arise
when we get to the issue of buying and selling of organs because I
think that's where the pressure is going to go.
Now as a minor contribution in that regard
and I'm probably jumping ahead of what Jim Childress and Dr. Hippen
are going to be saying I think the question of the freedom of an agent
who doesn't have resources and therefore sells a part of the body
as a form of income that there is also a crucial issue. Is there the
alleged freedom in that transaction or not? Because of course, that
impinges on the American ideal of autonomy and of course if autonomy is
assumed in that case, we may have a justification for the free markets
or the regulated markets that would not exist if we questioned that
CHAIRMAN PELLEGRINO: Thank you
very much. Other comments on this subject? Dan?
DR. FOSTER: I just want to make
one clarification about I've heard all morning people talking about
doctors cutting on living bodies that are not ill. I think that most
people in the room might have forgotten that we have a huge occupation
of doing that right now in plastic and reconstructive surgery. We cut
into these bodies all the time. We do liposuction and all of these
things in normal healthy people and many times with great risk and we
don't have — I mean there have been a lot of deaths here and so
forth. So we shouldn't try to set out that there's something
magical about cutting into a living body when we're doing that all
the time now and it's one of the fastest growing things.
One of the things that was said this
morning is the most lucrative salaries in medicine are not
neurosurgeons. They are plastic surgeons and they're paid in cash
and I'm talking about the fact that there are huge amounts of money
there. So I just want to clarify here that that is not a valid
argument about saying that we shouldn't do this.
CHAIRMAN PELLEGRINO: Thank you.
DR. KASS: You're not using
that as an endorsement I trust.
DR. FOSTER: No.
DR. KASS: Thank you.
DR. FOSTER: I'm not
CHAIRMAN PELLEGRINO: Dr.
DR. GAZZANIGA: Yes, just a point of information and maybe
the staff can dig this out, but we've heard about how various
European countries handle this problem differently by almost conscription
by the Dutch by the assumption the state owns the body and so forth
and we also have a number of those countries that have basically
one payer socialized medicine. Can we look at their organ transplantation
numbers just as an experiment to see whether the things we're
puzzling here in fact move to solve the problem? There must be
data on that. I don't know it.
MR. COHEN: I certainly don't
have it at my fingertips the data on other countries, although I think
this would be a very beneficial thing for the Council to hear an expert
come and talk about. Obviously different countries have different
systems, some with a kind of conscription system. Iran has some system
of regulated payment in fact. So I think it would certainly be very
important for the Council to hear either through a staff paper or an
invitation of an expert how things are working in other countries.
Could I respond quickly to Dr. Foster
whose comment I've very grateful about? One has to begin with an
important distinction between plastic surgeons who are trying to
restore a body that has been disfigured in some way, work that I think
is heroic, and plastic surgeons who are being paid in cash to perform
changes on the body that are optional at best. It seems to me that
should only further awaken us to the problem here. I mean the fact
that doctors are doing this doesn't mean it's a good thing for
us to do.
Now I think certainly in the case of kidney donation and certainly
in the case where the living donor is doing this as an act of love
to a family member, one in a certain sense could praise the courage
of the doctor who is performing such a terrifying surgery precisely
because he knows the life of a healthy person in certain sense is
in his hands. But I don't think we can ignore that there is
something that should give us pause here and that there's a
reason why, as I cited Dr. Matas before, doctors see these surgeries
that are not the most technically difficult as the most terrifying
and this is not saying that we ought not be performing them, but
it does invite us to think about the different human meaning of
that surgery and how that meaning might be changed even further
if the person upon whom the surgery is being conducted is doing
it for pay as opposed to as an act of love or as an act of magnanimity.
CHAIRMAN PELLEGRINO: Dr. —
DR. FOSTER: I want to make one
other caution. I think one, Eric, ought to be very careful about the
big point you made of an expert that came to talk to you and said this
was terrifying surgery. I would say that if you looked at 1,000
transplant surgeons that you would be very lucky to find five that felt
the same way, I mean, in the sense that every surgery is at risk.
But I was astonished to hear that this was terrifying surgery.
I guess what you meant was that because this was a person who didn't
have to have surgery and I suppose that's why that was there.
But I know the person who is the most involved in living liver transplants
out in Dallas and so forth and so on and I don't get any sense
that this, they want to be very careful about this and so forth.
But I wouldn't want to put too much
statement in one person's feeling about doing this, surgeons. I
mean we think we always talk about evidence-based medicine. If
we're going to quote something that is meaningful, then we ought to
have evidence for it rather than a singular statement by one transplant
surgeon. Okay? I mean if we're going to be a serious council we
need to look into that as well is the only point, the only response, I
want to make.
MR. COHEN: I'll respond only
quickly. I'm not trying to use this one surgeon's remark as a
way to have you see how every surgeon thinks about this. I will simply
repeat that the human meaning of a surgeon performing surgery on a
patient for whom the surgeon can do no good for that person's body,
he can only do harm, and especially in the liver case, there's a
fairly high rate of complication, not serious complications, and again
I'm not saying that the surgeon isn't doing something heroic by
performing the surgery.
But I think we need to be at least willing
to think about the fact that we have a different kind of encounter here
between a patient and a doctor; when someone arrives not as a patient
but becomes a patient because of the doctor's action. I'm not
suggesting that doctors are terrified because they're worried about
their competence and that was precisely the point I was trying, perhaps
failing to make which is that the point here is that the greater pause
is not because the surgery is technically more difficult but because
the meaning of the encounter between the surgeon and that patient is
different and I'm simply trying to make note of that.
DR. FOSTER: Gil, as long as I have
this microphone for one second, I mean to get back to what has been
approached here, we have a pretty straightforward problem. Now if
you're worried that taking an organ out somehow diminishes human
dignity as I think probably Gil thinks even from the dead, then
that's not going to address the problem here. We take organs out
of people all the time and spleens and everything else. We don't
think they're demeaned or it's undignified. We do it for
health and so forth but there's not something magical in my view
for doing it.
The problem is a very simple one. That is
we have a lot of people whose lives we can save and save money if we
transplant and that number of people is increasing very dramatically
and we may be able to increase 50 percent in deceased donor things with
incentives of one side or the other. Our first speaker this morning
said that she preferred to do that first of that. So I don't know
how and Dr. Hippen is probably going to tell us that in some advanced
hospitals, he told me this this morning, that the conversion rate is as
high as 70 percent with some things. But over all, we could probably
double the number of kidneys which are there.
Then we have to ask ourselves the problem, I don't want to
sound, the philosophers, Robby George is not here, saying I'm being
utilitarian and so forth. We have to decide is the loss of these
people who could be saved such that we take the risk of doing living
donor transplants and that has to do with the percentage risk that's
there statistically. If you get in a car, you're going to have
much more chance of dying from within a few blocks of your house
than you are from doing the surgery.
Now it sounds like I'm speaking for
this. I'm not. I'm not at all sure that I think that we ought
to expand this. That's what I'm trying to understand, but
that's the problem and I think it's maybe one thing to go back
and look to say what it means to be a human or what a dead body is.
But I'm interested in the practical
problem that we have 93,000 people that are on the waiting list. Some
of them are dying. Can we do anything about it or do we simply say as
a society that's tough luck that that's their problem that we
can do that? And that's what I think we ought to focus on and we
may say we don't think that we should do that or we could say that
we think the risk is minimal enough that an informed patient might be
willing to do that along those lines.
I'm not against these discussions. I
always enjoy reading Gil's papers. I mean they always make me
think even when I don't agree with them. But that's where to
get down to the core, Mr. Chairman, that I think that we can really say
something about it. Now that doesn't mean that we can't couple
that with philosophical discussions along the lines we did with
enhancement and other things, but it's the practical final answer
that we have to - I think that people want to hear from us as a
PROFESSOR MEILAENDER: If I could
just make two quick comments sort of intervening in the exchange you
and Eric have had. One, I do not believe you're just interested in
practical questions at all, Dan. You're interested in what it
means if a human being suffers and what our obligations are to those
who suffer and how we ought to think about them and so forth. These
are by no means only practical questions and I just want to —
Don't shortchange what you yourself are interested in.
The other is with respect to the business
about a doctor finding doing the transplant surgery a terrifying thing
in a way. I would like to put the point normatively. I haven't
made any studies about whether a 1,000 transplant surgeons do or do not
feel that way but they'd better. They should and if they don't
feel that way about it, then we need to ask ourselves what's gone
wrong, what have we lost that they've lost all sense of the
trepidation they ought to have in simply cutting into a living body in
order to help another one.
I don't mean that it's wrong to do
that necessarily, but I think we can only understand what's going
on if we have a certain kind of sense of something very peculiar there
and it's very peculiar for medicine. That's all. That's a
normative claim. I have no surveys to back it up but they ought to
think that way.
DR. FOSTER: Last thing. I do
want to say one other thing before this conference is over, but in one
sense I couldn't agree with you more about both things you've
said. Of course, I'm interested in a lot of other things besides
the practical problem, but right now, the practical problem is before
But a terrified surgeon or a terrified
internist is not a good doctor. If you're terrified, then you
don't make the right decisions. You want somebody who's
concerned about the thing, but if you're shaking about the
implications, I think that the guy ought to be worried about how
he's taking out the kidney rather than worrying about the
implications along these lines. I talked about the Dallas Mavericks.
They worried so much about what was happening to them that they
couldn't shoot shots and that's all I'm trying to say.
PROFESSOR MEILAENDER: But he
shouldn't — Of course, you're right. We don't want his
hand trembling while he's cutting, but we also don't want him
to come to think of what he does as such a matter-of-fact thing that
important and deep questions about it can no longer be raised.
CHAIRMAN PELLEGRINO: Dr. Hurlbut
and then Dr. Carson.
DR. HURLBUT: I was just going to
make a very obvious comment, but since you just made that comment, I
would like to add that your comment about the plastic surgery does
raise, it doesn't just argue for the similarity here on the
positive sense of transplantation surgery, but it argues for the
strangeness of quite a few things we're doing in medicine today and
I think we're all a little, as a physician I'm a little, uneasy
about the trend toward plastic surgery and I think we should reflect on
that as the larger arena of the way we're disposed toward thinking
about the body.
Now even as I agree with the central point
you were making, there is something a little strange when you read an
account of somebody who had plastic surgery and then died. You feel
like why did they do that. There's something about the natural
body that remember Galen said, "The physician is only nature's
It seems to me that you have to take some beckoning from the way
nature is organized. I know there's a big so-called heresy
in modern world, the naturalistic fallacy, that you're not supposed
to look to nature to get any sense of how things should be ordered.
Nonetheless, there is a certain order in the arrangement of being
and eminent powers within the being that we should keep as part
of our guiding principles in medicine and plastic surgery does raise
some challenging new questions that we should take seriously.
Having said that, I want to get back
something much more pedantic or more procedural. When Mike brought up
the question of the scope of our inquiry and made, I think, the
important contribution that we should look to the experience of
comparative cultural approaches and different social practices and
starting assumptions, that's a really good idea.
I think we should also extend that a
little bit within our own sphere because it struck me this morning as
we were hearing about the number of organs versus the number of
transplants, that there's something implicitly nonequal about those
two statistics. The yearly transplants are not the same as the number
of people on the transplant list. Those people live for years. So we
need to do a sort of statistical analysis that show how many people
really are not receiving organs who rightly could receive them.
Obviously, the — I think that's maybe obvious what I just said.
It's just simply a matter of kind of a magic of numbers. If
somebody is on the list for five years, you don't compare the
yearly rate of donation to the actual need on the year-to-year basis.
Second, it would be useful if we're
going to do this kind of inquiry to request perhaps for the organized
bodies some kind of an analysis of outcomes, true added years and how
they relate to the age of donor and recipient and I think this
isn't a very popular comment to make because I don't want to
dissuade anybody from donating if it's a positive thing to do.
But I think in all honesty we have to ask ourselves the question
of: Are there any adverse outcomes? We've heard a little bit
about that in previous presentations, but let's be honest about
it. You have two kidneys. Why do you have two kidneys? Is it
because people historically or all antecedent animals had some ongoing
kidney damage from infections? We now have antibiotics. We have
probably much more healthy kidneys at 50 years old than in people
in the past who were not treated for a urinary tract infections
But we should ask ourselves and we should all honestly look if
there are any downsides before we make any recommendations. That
should be an honest part of our inquiry. Does donation at once
involve some risk to the individual who makes the donation and that
wouldn't necessarily preclude it? It might actually increase
the dignity of the donation and the depth of the gift, but we should
And finally, we should explore more of
what Eric was mentioning in the positive outcomes and somebody should
do some kind of analysis on that as part of the scope of our inquiry.
Because if it really is a really deep engagement of another possibility
like an invitation not an obligation, it might be a very positive
invitation to our civilization. But let's not start with the
assumption that there are superfluous parts that are just there that we
don't really need. It might be a genuine sacrificial gift, a very
high invitation, to our deepest humanity.
CHAIRMAN PELLEGRINO: Thanks Bill.
DR. CARSON: First, I would like to thank Dr. Foster for
putting the salary of neurosurgeons into the proper perspective.
You know as a surgeon I would like to say that certainly we're
not terrified when we go into the operating room, but certainly
there's a healthy respect for what's being undertaken and
the degree of urgency of the situation I think plays into it. If
you're going in to do something that's lifesaving and there's
no question about that, you're probably going to enter that
perhaps with a little less trepidation than something that's
questionable not only for ethical reasons, but for legal reasons.
But recognizing that surgery tends to be
something that works very well for people, I don't particularly
like surgery to be honest with you. But it's something that the
Lord gave me talent to do. I don't like the sight of blood. Some
people find that very amazing. They say, "You're a
surgeon" and I just say, "Would you rather have a surgeon who
likes to see blood?"
But the fact, the other thing, I wanted to
bring into play here is there have been several mentions of paying
people for the procurement of organs and of course, it's usually
mentioned in a negative light, but I think we also need to recognize
that this is not something that hasn't been done for a long period
of time with blood transfusions. We've been paying people for
blood for a very long time. We pay people for sperm donations. These
are things that in one case can be lifesaving and in another case life
creating. So there is certainly plenty of precedence for that.
It's not to say that it's right or wrong. It's to say that
we need to make sure that we keep all of these things in perspective.
CHAIRMAN PELLEGRINO: Thank you very much. Other comments.
I'm glad we're getting into the situation or giving us some
advice here which is very helpful. I can at least make this passing
comment. The intensity of the discussion almost answers some of
PROFESSOR LAWLER: According to
this theory of surgeon terror and I agree you guys shouldn't be
reading Kierkegaard or anything like that, but the most terrified
surgeon should be the cosmetic, plastic surgeon because he in fact does
no one any good. Yet he's cutting on people. Yet my limited
experience, these are some of the happiest and self-confident people
around, not to mention well paid or anything.
CHAIRMAN PELLEGRINO: As long as we're talking about terror,
I don't want you to exclude us internist either, risk out of
everything. Okay. Sorry. I keep forgetting. (Turns microphone
off.) I very much appreciate any comments you want to make.
DR. FOSTER: Since nobody else is,
let me make one other comment in response to Floyd's issue of
prevention which is a huge problem and as all of you know, but I just
want to tell you, it's become a little more complicated and that
has to do with the worldwide epidemic of obesity and its capacity to
induce diabetes which is the leading cause of renal failure in the
world and the interesting thing is that this whole epidemic does not
require medicines, surgery, anything else. It just requires eating
fewer calories. That's all. I mean, Type II Diabetes is curable
right now and you don't have to get pancreas transplants. Yet the
epidemic is hugely increasing in countries that you never thought to be
able to see obesity, France and so forth. It was just us and so forth.
So the problem is that Gazzaniga is going to hop all over me,
but at least the people who are working on addiction that I know
about now begin to talk about hedonic. I think they also say hedonistic,
but hedonic neurons where there's pleasure and fulfillment involved.
They're coupled with all of these things. So you can't
— I've talked to I can't tell you how many people
who weigh 400 pounds and who have renal failure, early renal failure,
and I say, "Miss So-And-So, if I were you I would have my mouth
wired together and not eat another bite until I had lost 200 lbs.
You don't have to get back to normal weight. You just have
to do it."
So we have a problem there and it's
not just because McDonald's is there. It's not genetic in the
sense. It's too fast for genetics to be here. So it's we just
can't get people to quit smoking or to quit eating and so forth.
So it's going to be a real problem, but it's a little more
complicated than that. Although I should say that many of you know
about new drugs like rimonabant. Rimonabant binds the canniboid
receptor I which is where marijuana hooks in, but we now know that
there are normal canniboids. The universe doesn't give us
receptors so we can take opium, the opiate receptors. It doesn't
give us a canniboid receptor so you can smoke marijuana.
But one of the side effects we've
known is that the canniboid receptor then crosses over to the
micro-opiode receptor. It hooks in. That's why it enhances the
pain release with marijuana. But if you block this, it must have some
effect on the hedonic pathways because 25 percent of people who are
smoking quit cold on this and there's a significant weight loss
with that. So there may be some possibility that the scientific
approach would be a way that we could begin to bring this in an
increase in fatty acid oxidation. So we can't do it by what the
self-responsibility should be to just cut down on what you eat, but we
have to look at this and we usually treat lung cancers even though
they're due to smoking.
Now here's the complication and
it's really quite new. The reason that obesity makes you get
diabetic if you have diabetes as a gene is that it gives you insulin
resistance so insulin doesn't work. All Type II patients have
insulin resistance. They have a high levels of insulin in the blood
but it doesn't work because you have resistance and then if you
become obese too, it moves the time. That's why the leading cause
of diabetes in pediatric practice now is Type II diabetes which
didn't used to start until you were 40 years old and so forth.
Here's the problem. Gerald Reaven at
Stanford University was the one who described what's called a
metabolic syndrome. This is a syndrome that predisposes to diabetes
associated with diabetes and so forth. This obesity by the way is now
the leading cause of liver disease in the country, more than alcohol,
more than anything else. Fatty livers due to obesity is the leading
cause just like it is leading to kidney failure with diabetes.
What Reaven has discovered is that 25
percent of us that are normal weight and have no diabetes have insulin
resistance and he has now followed a group of these people for ten
years. They are normal people and they have the same increase in
vascular disease, stroke and atherosclerosis as diabetics and so forth
do. So it gets more and more complicated. We don't know what
causes this, but even if we cut the weight loss down, it will help. We
still may have a problem with some of these other things going on.
Professors like to tell you about new
stuff in science. So I thought that that's not very well known.
There's a new paper in cell about this, about the insulin
resistance, in and of itself being the cause of vascular disease that
goes on. I hope that's clear.
CHAIRMAN PELLEGRINO: Professor
PROFESSOR SCHNEIDER: And before we
leave that topic because I've spent a good deal of time with kidney
patients, I do want to say that there are a lot of them who have
inherited their disease and got it for reasons that have absolutely
nothing to do with the virtue of their behavior. But I wanted to obey
the request to comment on this as a topic and I'm not quite sure
how to do that because it's not clear to me what you exclude as
another topic by choosing this as a topic and I certainly can think of
a number of topics that are equally interesting. But it's obviously
a topic of social importance that is directly relevant to the kinds of
questions that we're talking about.
I would like to say two things. First, we
are not the first people to think about this. Socially, we have not
leapt into this unthinkingly. We have actually moved very slowly in
making transplants more available and in assaying small experiments,
very incremental kinds of experiments to try to increase the pool and
each step has been taken I think actually quite thoughtfully. So I
hope that we don't neglect in our anxiety to think about things
basically, the considerable amount of social thought that has already
gone into this.
Second, I confess that I am still failing
and I have no doubt that it's my failure and not the failure of my
preceptors to understand all of the reasons that it is disturbing to
cut into a healthy body in order to help another person. I sometimes
wonder whether it helps to think in the language of all things of
economics. If you have interdependent utility functions with somebody
else, it's perfectly easy to understand why cutting into your body
to help somebody else is no big deal and the idea that it's
possible to understand it if you're doing it for somebody you love,
but almost inhuman to quote from one of the papers "to do it for
somebody whom you don't know" just reminds me of what I read
some years ago about the Good Samaritan and the question who was your
So to come back to where I started the
discussion off, I am still very much at a loss, while granting that
it's important to ask these questions, I'm still very much at a
loss to understand what it is particularly about the donation of your
organs that is in some way interfering with your integrity as a person
and with the function that doctors ought to have.
CHAIRMAN PELLEGRINO: Mr. Cohen.
MR. COHEN: I wonder if I might
quickly try again to respond first just very briefly on the issue of
the almost inhuman. That cuts in both directions. There is both
better than human and then less than. I mean there's a certain
sense in which giving an organ to a stranger simply as an act of
charity or altruism or even love is in some sense better than perhaps
most of us are willing to do. But there's also something strange
about it and that's why people who are purely anonymous or
altruistic donors go through a kind of rigorous psychological screening
in fact to decide to whether this is a freely made decision and a
decision that is truly informed.
But on the deeper question about how do we
understand the meaning of doing surgery on the healthy, introducing now
that it's a theory of terrified physicians. But presumably we have
to think about the acceptable level of risk. Right? In the kidney
case, it seems pretty clear to me that this is an acceptable level of
risk. There are some outcomes that are bad. There's a fairly low,
but a real risk of mortality for the healthy donor. But it seems to me
both morally justifiable and in many cases morally heroic to do the
surgery that removes an organ, a kidney, from the living donor to put
it into someone who is sick and whose very life hangs in the balance.
At the other extreme, it would be the case
of the parent who wants to donate a heart to his dying child. One can
understand the nobility of the motive and the desire for the parent to
save the child and perhaps give the rest of his organs to other people
who might be saved. You could save many lives at the cost of one, but
obviously no surgeon would even contemplate performing such a surgery.
Somewhere in the middle we have to decide
what is the acceptable level of risk. I think that's something
that probably has to be made a judgment case by case, family by family,
doctor by doctor. I don't think there's one formula. But
again, I don't think we should ignore the moral dilemma here, the
dilemma that exists even in the low risk cases. It gets even more and
more complicated for us as you go from removing a kidney to removing a
part of the liver and I think we can't ignore the moral difference
in that kind of surgery compared to other kinds of surgeries where the
patient is sick and the medical intervention is the best effort to try
to help them.
CHAIRMAN PELLEGRINO: Thank you.
I think we are at the time for the break.
PROFESSOR McHUGH: You just asked
that we should all volunteer. Now you're going to shut me off.
You're a tough chairman.
CHAIRMAN PELLEGRINO: We'll
watch you, Paul.
PROFESSOR McHUGH: Anyway, let me just make the simplest
points that I had made somewhat before that first of all our issues
of getting the organs and getting them from both loved ones and
from the deceased will really depend upon doctors themselves being
more engaged on both the donor and the recipient or it's going
to be a cash market thing. Those are the two things that are going
to go if human organs are going to be the only way. And I said
it the last time. I believe that the major solution here ultimately
is going to be xenotransplantation and we need to know where we
are in that arena.
I absolutely agree though with what was
said by Gil and what was said by Eric and also it was said by Peter
that I don't want to find us in a situation where poor people are
exploited and are forced into it and led to believe that they must do
this as an act of desperation. That's not a new idea by the way.
In literature, that's spelled out. I think Les Miserables has a
description of that similarly not with anything so serious as an organ
So I think that one of the places that this Council should be since
it's discussed the importance of research both in what Floyd
says going backwards. I think it should also talk about the very
great importance of cultivating xenotransplants as the solution
really for these things.
CHAIRMAN PELLEGRINO: I think
we're at the point now of our break. Return at 3:45 p.m. Again, a
comment. Almost everybody has commented on this and again we'll
take that under serious consideration. Off the record.
the foregoing matter went off the record at 3:31 p.m.and went back on
the record at 3:52 p.m.)
SESSION 4: ORGAN TRANSPLANTATION AND PROCUREMENT—POLICY PROPOSALS
CHAIRMAN PELLEGRINO: On the
record. We're ready to go. For the last point of the afternoon,
we move to the IOM report and various other aspects Dr. Childress will
talk about. I think it's especially important again in view of
your question of what the IOM is doing and where we fit and I've
asked Dr. Childress if he's be kind enough at the end of his
comments to tell us where he thinks we might make a contribution
knowing what he does about the IOM report and other aspects of this
from his many other experiences.
Dr. Childress is the Hollingsworth Professor of Ethics, Professor
of Medical Ethics and Director of the Institute of Practical Ethics
at the University of Virginia and Chairman of the Institute of Medicine
Committee on Increasing Rates of Organ Donation, a rather focused
assignment, Jim. We're going to ask Jim to take off and then
we will ask Dr. Hippen to speak. He's a transplant nephrologist.
We'll do what we've done in the
past this day. After they've made their presentations, then
we'll ask one of our Council members, Dr. Schaub, to initiate the
DR. CHILDRESS: Thanks very much.
It is a pleasure to be with you again and I very much appreciated the
discussion that occurred in the last couple of hours and I've been
asked to talk about the IOM report which just came out in May and then
offer some comments at the end about some things having heard the
discussion earlier today and having also looked at the transcripts from
previous sessions of where I think there are some real opportunities
for the President's Council of Bioethics to make real
contribution. Indeed, you may need to correct several things in this
report, but there are some other things that you could also do as well.
I've been asked to limit my slides to 15. So I have 45 and you
have a handout before you that gives all of those. The reason that
I included all those is I wanted you to see the whole picture.
I'm not going to talk about the whole picture. I'll give
you a sketch of it, but then I've been asked to concentrate
on a few particular areas that are more important for your considerations.
So this committee was sponsored by these
institutes and received funding from them. This is the makeup
committee and again that's in your PowerPoint, our timeline. Now
the statement of task is more important, so I'll linger on that for
a moment because any committee including the President's Council on
Bioethics will end up in part doing something either directly related
to or contravening the task that was given.
We did try to follow the task and that was
to examine issues surrounding different proposals that have emerged for
increasing the supply of organs from deceased persons in particular to
look at ways to increase rates of organ donation. We were asked and
this is not part of the slide to distinguish those that were
controversial from those that were not so controversial and how do you
determine what's not controversial and not. They asked us to think
about it in relation to basic American principles and values and once
we identified something that was controversial to ask whether it would
be possible to modify or alter those proposals in ways that might make
them less problematic and then to consider specifically the impact of
these different proposals on the nation's efforts, on public
perceptions and especially on disadvantaged and disproportionate
affected groups and to make recommendations about cost effectiveness,
feasibility, practicality and the like.
Now we had several guiding perspectives
and principles that we came up with early in our deliberations. These
are very broad, but I think important nevertheless and they are not so
different from some of the appeals that came out in your earlier
discussion, but your earlier discussion did focus more on some of the
more fundamental or you might call richer ethical perspectives. If we
didn't start in the middle of things to use Gil Meilaender's
language, we at least started thinking about sort of mid-level
principles and values and how they might play out in assessing the
different policies that have been proposed. So first the common stake
in a trustworthy system that we view this as something that's
significant for everyone in the national community, it should be
effective and it should be trustworthy and if the organs remain scarce,
then the issues about fair distribution become very important.
In relation to your earlier discussion which emphasized altruism
a lot, we emphasized a variety of acceptable appeals to organ donation
for organ donation and our society has tended to focus on altruism
as a primary category. But I'll emphasize later, particularly
in relation to living donors, that we actually don't know that
much about motivation. I'll come back and explain why that's
the case. Altruism is certainly one important motive, but there
are a lot of other motives as well and we suggest that it's
important or appropriate to appeal to all of those.
Then certainly one that's played a
role in your discussion already, a notion of respect for persons, it
can be stated in different ways but includes respect for the moral
worth and dignity of each human being, the individual's right to
govern what happens to the body after his or her death including a
voluntary choice to donate or not, respect for the remains of human
beings as represented in different cultural and religious traditions
and practices and respect for the wishes and feelings of the family of
deceased individuals. All of those are relevant concerns. We would
like them in a particular way, but they are relevant concerns for
thinking about different policy proposals.
And then finally a fairness, this has to do in part with background
conditions but also a fairness in the policies both in the what
we used to think about in terms of distribution of the benefits
but also distributions in the burdens of decision making and I think
that becomes important when we think about, for example, a possible
policy of presumed consent with particular attention to the impact
on disadvantaged groups, a concern that was stated clearly in the
task that was laid before us.
Now only a word about this one since this was not one that I was asked
to focus on but I think it's important to see the role this
plays and why we did not make certain other recommendations. This
report can be seen in many ways as a conservative report. It basically
builds on existing practices and policies, progress has been made
in practices and then suggests ways to move forward with those making
various adjustments here and there. The one area where it's
radical is in calling for great increases in the use of non-heart
beating donors as they are often referred to or those declared dead
at using circulatory standards.
Now there has been as you've already
heard earlier in the discussion considerable improvement in the
breakthrough collaboratives in increasing the supply of organs in the
institutions, some getting as high as 70 to 75 percent of donations
from individuals who die in those institutions. Now that's an
important part of our perspective. If we'd been able to achieve
that much with the systems that we, that is those that have been
involved in this have been able to develop over time, then it may make
the need for, say, a regulated market involving organs from deceased
individuals less important or some of the other proposals less
important. At least, we can make a lot of progress here. So you have
those in your handout.
Now the area where I think our report is
radical and I'm presenting this in terms of the order in the
report and I believe you have a copy of the full report, at least a
hard copy perhaps or on the CD, is we tend to limit our pool to those
who are declared dead by neurologic standards and one estimate is
12,000. They range from 10,500 to 16,800 but that's roughly the
range. So even if all of our practices were to great increase the
rates of organ donation limited to this pool, we may still have
problems given the kinds of increases that we can expect over time in
the need for transplantation.
So you've already heard there are several ways to go. We'll
come back and talk about living donors later. Our report did not
address xenotransplantation or stem cell research or other technological
possibilities of the future, though they are obviously important.
So we are in the United States using some donors who are declared
dead by circulatory standards but these tend to be cases of controlled
dying and we don't really know how many potential donors there
For the committee, the largest area that
was untapped since so many people die the old-fashioned way, cardiac
arrest, they're according to one conservative estimate, would be an
estimate each year of about 22,000 individuals several of whose organs
could be salvaged after individuals had been declared dead by
circulatory standards and in 2003, the possible number, it's not
very clear, from that group was limited to 17.
So what do we recommend in this? Here you have the terminology
and you can look at that in your report. We are focused, we said,
on a continued controlled recovery order and where possible, from
controlled or expected cases of dying but to try to get this untapped
area of uncontrolled or unexpected deaths occurring outside the
hospital setting and there's a lot we don't know about this
area and so in part, we're recommending demonstration projects.
Now they ethically will choose their
rights. I will not focus on those related to controlled DCDD. That is
donation following circulatory determination of death. That's the
language we propose. There is a lot of variety in the language
relating to this area and others and whether this language will catch
on or not is unclear.
But just to say a few words about
uncontrolled DCDD and clearly from an ethical standpoint, it's
important that resuscitation efforts proceed in the field on the street
until you're clear that the person cannot be resuscitated. When
you're transporting a person to the hospital, one of the big
questions is going to be once you've determined that you cannot
resuscitate this person what kind of consent is needed for beginning
procedures to try to preserve the organs for transplantation. If there
is a registry and an individual is in it, if there's a signed donor
card, then you can take that as consent to starting the procedures that
will preserve the opportunities for donation.
If there's not, then there are a few
states, Virginia and Florida for example, and the District of Columbia
that do allow beginning procedures that could preserve opportunities
for organ donation if you are able to locate the family and get
consent. If not, then of course those procedures stop. But you can
see the complexity here both logistically and ethically.
There are several steps we recommend and
clearly this will include public education, professional education as
well as critically excellent emergency and resuscitation care. We
proposed demonstration projects in large urban areas where there are
excellent emergency and trauma services and facilities to see really
whether it's feasible to actually obtain and transplant
successfully a number of organs from these cases as well as again
thinking about this in terms of maintaining opportunities for organ
Now in terms of individual and family
decisions to donate, one that I know some attention has been paid to
here is the question of mandated choice. At least, that's
discussed in Eric's paper and we came to the conclusion while
supporting various ways to increase public understanding and support of
donation, increasing opportunities for people to record their decisions
to donate and even stressing the role of statewide donor registries
with nationwide access to those, that on the controversial topic of
mandated choice in which you force individuals to choose yes or no or
presumably you can do maybe or in a proposal that came out a number of
years ago you could ask individuals if they wanted to designate a
potential decision maker in your place, there would be a lot of
But we felt that it is not appropriate at this time to pursue
mandated choice. Obviously, there are some concerns about individual
autonomy though you could argue that this is a way to get individuals
to exercise autonomy about what would happen to the organs after
their death. Timing of a current situation is that we tend to ask
the wrong persons at the worst possible times questions they've
never been asked and should never have been asked in our current
approach. So this would at least require on the part of individuals
decision making up front.
Now we know that forced choice decisions
often lead people to choose what they take to be the safer route. I
think there are good reasons here to think that if we instituted
mandated choice at this time, we would actually reduce the number of
organs from deceased donors for transplantation. Now part of that
argument is that if you ask why people do not currently sign donor
cards, some of those reasons have to do with inertia, with not having
thought about it, but some of them just have to do with trust and
mistrust of the system. Insofar as those reasons are present, to force
individuals to make a choice where they're worried about that sort
of thing will tend to lead them to say no. If they say no, they block
familial decision making even though they might not have objected to
the family making the decision. So it becomes a block in terms of what
might happen later and in our current context, it's not at all
clear that this would be an effective way.
The first question the IOM Committee
asked about any proposal was would it be effective in increasing the
supply of organs for transplantation. Because if it wouldn't, then
it doesn't pass the first test. There are other questions
obviously that have to be raised but this was the first one. If you
informed and educated the public to the point where this was
acceptable, you probably wouldn't need to adopt it all anyhow as
you probably through just the ordinary approaches we have would be able
to get enough individuals to sign their donor cards or in a registry.
So our recommendation was not enacting legislation at this time
requiring people to choose whether or not to be an organ donor.
Now presumed consent is another important
topic and that language varies a lot. You've heard from Robert
Beech at an earlier session and you heard some of the discussion
today. I'd like to draw the distinction in the way the Institute
of Medicine Committee drew it knowing that this is a contested
distinction. But I think one can distinguish a policy of presumed
consent from a policy of routine removal or I believe as Leon used the
language today "routine salvaging" or language used in
Eric's report of "conscription." And I think you can
distinguish them in at least the following ways.
In routine removal, salvaging, conscription, the view is that
the state or the society has ownership or dispositional authority
over the organs of deceased individuals and it may take those organs
unless, and in most cases, there is an option to opt out, it may
take those organs unless there is objection. Now that clearly is
a top-down approach based on depositional authority over organs
by the state or the society.
And that would be different from another approach which would be individuals
and family members having the right to make the decision, having
the dispositional authority those organs, determine access to those
organs. But in a situation where the society has made a determination
that a silence, that is the failure to opt out, will count as consent.
Now there are a lot of contexts in which we do have silence or a
silent consent or a tacit consent but in our judgment as a committee
even though this could be ethically acceptable in principle, we
lack the social/cultural conditions in the United States to implement
this and so Bob Beech is right.
If you were to simply implement this
tomorrow in the United States, then you have the kinds of ethical
problems he noted. It's not clear you would have those in all
kinds of systems. Furthermore, there are different versions of
presumed consent and a list too there that weaken the strong versions.
It turns out in practice even the law in most countries where there is
presumed consent even if the law doesn't require consultation with
family members, in practice the procurement teams tend to do so in part
to make sure that the individual did not opt out in circumstances not
noted in some appropriate way.
And for this to be acceptable, we
basically argue the last point on the last bullet here that you would
have to have clear, easy, nonburdensome, reliable ways for individuals
to opt out. So if this were to be enacted at this time, it would be in
many ways contravening personal autonomy. We don't have the
social, cultural conditions for this and we don't have the kinds of
mechanisms that would be important. But in addition, it would be
Like mandated choice, it would lead to a
reduction in the number of organs available for transplantation is the
best judgment we could come to. Now that's based again on putting
individuals in a situation where they don't fully trust the system
that apparently exists and that would exist here with just the changes
in the direction of presumed consent and it would be quite reasonable
for them. Indeed, you'd be very surprised if they did not choose
to opt out in order to protect what they take to be important personal
interest. So we argued against adopting presumed consent at this point
though we left open the possibility that you can move the society in
this direction over time. So that was our recommendation.
Now in terms of financial incentives and so there are two more
parts to this, financial incentives and living donors, and clearly
a number of proposals have emerged and you've looked at this
in part directly, but also in part through Eric's analysis.
And our basic conclusion I'll present now, and then talk a little
bit about some of these, is that we should not adopt financial incentives
at this time. Now committee members clearly differed in part as
to whether they viewed it as intrinsically wrong to adopt such incentives.
Others of us did not hold the view that it's intrinsically
wrong, but felt that it could not be adopted in our society at this
time because of a variety of other ethical concerns related to fairness,
respect for persons and the like. And furthermore, it's not
necessary to go that direction for obtaining organs from deceased
individuals. We have the other systems in place that can be further
extended to basically do the best we can do with relation to those
who are deceased. And so we tried it by analysis of direct and
indirect in ways that would let us see the possibilities ethically
speaking as well as the limitations and again came to the conclusion
that we should not promote financial incentives direct or indirect
at this time. We left open the possibility of future consideration,
Now nonfinancial incentives can go a couple of ways. One, you
could do it in terms of eligibility for a future transplant. If
you want to be eligible for a future transplant, you need to indicate
that you are a donor, join a the club as it were. The Life-Sharers'
model is a little closer perhaps to the preferred status and it's
a private club within the large club. The other possibility would
be giving some priority points for future transplant to individuals
who have documented their decision to donate.
The conclusion we came to here while
obviously keeping open the nonfinancial incentive or community
recognition, we came to a recommendation not to go forward with this
type of incentive as well other than community recognition in part
because in our society at this time, we believe that the conditions of
unfairness and injustice are such and that related in part to the
allocation of organs that they are in the words of the report
"insurmountable obstacles to instituting a program of nonfinancial
incentives." And I won't go through the details of the
recommendation. We can come back and talk about any of these points
To stay within my time limit, let me turn
to the living donors. So `88 to 2005, you can see the shift. You can
see the increase in all donors. You can see the increase in deceased
donation, gradual and you can see the more dramatic increase in living
donation. But that's not the only important point and you can see
in 2001, we actually had more acts of living donation than we had of
But something else interesting that's
happened in the period, this is just from `95 to 2004, and that is the
relationships between living donors and recipients and what I would
note is other unrelated, unrelated other than the categories here, in
1995 4.7 percent. In 2004, 21.1 percent.
Now what I would emphasize again in
relation to a point that was made in the discussion earlier is actually
the studies have been conducted of decision making including the
motivations for the decisions among living donors, those studies
focused especially in the early `70s and late `70s, Roberta Simmons and
colleagues, focused on those in special kinds of relationships. It was
actually a long time before it really moved out to including more
spouses. So there were special kinds of relationships.
We don't even know now whether the same kinds of patterns of decision
making persisted for individuals in those relationships and we certainly
don't know it for these new relationships. So we don't
know whether to talk about altruism or some other kind of motivation.
We simply don't know. So that's one of the things that
certainly needs to be done. You see I'm going to come to some
kind of recommendation for the President's Council in a moment
And we ended up also saying the following
that since we don't know a lot about this area that we need to
ensure voluntary informed decision making or recommend as the HHS
Secretary's Advisory Committee has also that there be an
independent donor advocacy team and a lot of transplant centers have
those. But and most importantly, to go back to the discussion of risks
that occurred earlier, we actually don't know the risk even of
living kidney donation past the short-term complications.
There will be a study coming out in a
medical journal in the next few weeks that indicated in terms of
followup that as a matter of fact in studies where you put them
together, studies related to subsequent increasing blood pressure and
hypertension you have to do them actually, you have to bring all the
studies together in order to even see a statistical difference but then
it does show up that even in those studies that over 30 percent of the
people were lost to followup. So there's a lot we don't know
here and so we're recommending that there be registries of living
donors to follow up over the long term. But also we don't know
about the psychosocial outcomes. Again, we've had over 80,000
living donors of kidneys. So we know a lot about short-term
complications. But we don't know a lot about the long-term
implications for health and for psychosocial factors.
Now I would note that this was, the living
donation which I've just mentioned and the final chapter is a brief
chapter and it was not the core of our report as someone rightly noted
in the previous discussion. We were asked to look at increasing the
rates of deceased organ donation. This is an area that I think cries
out for further attention and is an area that would actually build very
nicely on the sort of work that's already been done in the papers
that Eric and Gil have provided and the discussion we've already
We've mentioned in the report, we
don't make it a formal recommendation, that this area is ripe now
for some committee, whatever it is, to give this really serious
attention and it becomes important because this is varied when you look
at the various proposals for introducing some kind of market that you
can actually get traction. Our argument is that you're not going
to make much difference, probably none at all. It may even be
counterproductive. You may even crowd out altruism in the deceased
But, yes, you can get an increase in the number of living vendors
as they would then be called. But the question is whether we should
go that direction and given our reservations about living donation,
you can see that had we addressed this, there probably would have
been reservations. We did not address that. So I think the President's
Council on Bioethics, there is a lot of ways that it can contribute
to it. I've mentioned two. The kind of philosophical, ethical
work that is being done does move this to a deeper level than what
we even considered because we again took it at a different level
in trying to address the policy questions. That would be an important
A second one would be to do something with
living donation and connect it with the problems that would arise if a
move in the direction of a market. So those are just two quick
thoughts and I thank you very much for your attention.
CHAIRMAN PELLEGRINO: Dr. Hippen is our next speaker.
DR. HIPPEN: Thank you, Dr.
Pellegrino. I'd like to thank the members of the Council for
inviting me here today to speak in defense of a regulated market in
organs from living vendors and I wish to begin by addressing some
points made by Dr. Meilaender in his essay for the Council and although
I'll register several disagreements of the ways in which Professor
Meilaender has framed the questions, I endorse entirely his view that
to distinctly start with the defense of a market in organs is to
presume that a number of proceeding metaphysical questions have already
been asked and answered.
So without getting too far afield, I'd
like to address three points. First, in his essay, Dr. Meilaender
argues that the belief that the organ shortage is to be understood as a
crisis to be solved is ultimately to imply in slippery slope fashion
that death is a problem to be solved.
I've never met anyone in the course of
my medical training nor have I come across in the literature the belief
expressed by medical professionals that death is a problem to be
solved. My dialysis patients certainly do not believe that either
dialysis or transplantation makes such extravagant promises. For them
the endurance of thrice weekly dialysis for three to four hours a
session, the insertion of two 15-gage needles into their arm or thigh,
is a painful reminder of how death is not a problem solved but merely
averted on a day-to-day basis.
When things are working well, dialysis is tolerable and indeed
is stoically tolerated by hundreds of thousands of people in this
country every day. But when things aren't working well, when
a dialysis patient's tether to life is comprised whether by
a Permacath infection, a clotted access, a mistreatment or worse,
they can expect unscheduled disruptions of everyday life often of
unpredictable durations. Here antibiotics, catheters exchanges,
access declots, emergency room visits for pulmonary edema, hypertensive
urgency, life threatening hyperkalemia, myocardial infarction, stroke
are not unusual.
But perhaps it's not news to many that
life on dialysis is a fragile, vulnerable existence. Does kidney
transplantation then offer the promise of solving the problem of
death? On average, my patients with kidney transplants take six
medications a day, though often their medication lists extend to 10 or
15 different pills a day. In their first year after transplantation,
they see someone like myself some 30 times in clinic assuming the
transplant proceeded without complication.
Some develop side effects from the
medications like hypertension, diabetes, high cholesterol, mouth
ulcers, hirsutism, significant wakening, diarrhea, skin cancers, etc.
And some are a prescription refill away from a hospitalization. But
even absent these problems, transplant recipients are committed to a
lifetime's worth of lab draws, doctor visits, medication
adjustments and occasional setbacks. To be sure, most all of them will
tell you they are far better off than they were, but I can assert with
confidence that no one seriously mistakes this kind of a life as a
solution to the problem of death which brings me to my second point.
I think Professor Meilaender is correct
when he objects that to conceive of the disparity between the demand
for and supply of organs as a crisis is to move ahead too quickly in
the argument. The concern I gather is that to view the organ shortage
as a crisis to be averted is to insist on the medicalization of generic
suffering that is an unavoidable component of all human life. Fair
enough insofar as it goes.
But those who argue for a market in organs, unlike those who advocate
increasing donation only, need not insist that others view the current
system or its eminent failure as a crisis. Market proponents need
only insist on the moral permissibility of a market in organs in
the lack of a moral justification for a legal ban, not a broad moral
endorsement of such a market. In a free society whose hallmark
is irreducible moral pluralism, this more modest view partially
shifts the burden of proof to those who insist on maintaining the
current legal proscription on a regulated market in organs.
One, if it's not reasonable to expect that human beings will
continue to voluntarily suffer and die for moral precepts to which
they ultimately do not subscribe, it follows that the predictable
consequence of failing to address the shortage of organs is and
will be the multiplication of needless and unwanted suffering and
a few examples of this include an expansion of time on the waiting
list which effectively excludes the vast majority of patients on
dialysis without a living donor, recipients who are older and sicker
when they come up for transplantation as a consequence of their
extended vintage on dialysis, increasing emotional pressure on any
available donor to donate and the consequent strain on the altruistic
features of donor motivation, an upsurge in the practice of international
organ trafficking, traveling to a developing country for the purpose
of purchasing an organ in which the incentives for vendors are to
avoid disclosing co-morbid conditions, brokers to suppress any information
which might interfere with a successful transaction and recipients
not to disclose the transaction for fear of prosecution or ostracism
by health care professionals and finally, a proliferation of the
chaotic pathos inherent in the desperate public solicitations of
organs on the internet and elsewhere. These are the entirely predictable
consequences of shortage and so these reasons that I believe the
transplant professionals are in the position to shape public policy
on this issue bear a moral responsibility to offer plausible solutions
to the problem.
A final point critical to Meilaender's
argument is that the exchange of organs for valuable consideration
somehow limits the value of an organ to its exchange value.
Conversely so the argument goes, when organs are gifted the value of
the exchange is wholly determined by the fact that it is a gift. The
vendors may sell or exchange their organs for any number of reasons.
Such reasons are by his argument studiously rendered irrelevant if the
only value attached to the exchange is its exchange value.
Consider some possible reasons why someone might sell or exchange
their organs. Someone exchanges their organ for a $25,000 donation
in their name to a charity to which they are morally attached.
Someone exchanges their organ for a $50,000 deposit in their child's
529 tax sheltered college account. Someone engages in an organ
swap with another donor recipient pair so that their loved one might
receive a transplant. Someone exchanges their organ for a lifetime
health care and prescription drug benefit or a deposit in a health
savings account for which they may or may not have had before or
someone exchanges their organ for $50,000 and purchases a sports
As best I understand Dr. Meilaender's
categories that is organs either are a commodity or they are a gift
with no more salient differences between these possibilities. The view
I endorse might permit any of these exchanges but would morally endorse
rather fewer of them. The point is that a generous interpretation
would concede that organ vendors might vend for a great many reasons,
some of which really do embody a species of moral valor, some rather
less so and some not at all. As the above examples show, the
conceptual elegance of the term "valuable consideration" is
that it has far more interpretative flexibility than exchange value
which just implies cash money.
And the value of an organ can be assessed along many different
axises of value. An inexhaustive list of values of organs include
the value to the recipient of the organ in terms of the extended
quantity and quality of life gained, the value of the recipient's
family, friends and loved ones from his improved condition and the
value of the valuable consideration to the vendor whether that consideration
is destined for the vendor or someone else. So an aggressively
uncharitable consideration is required to understand all of these
means of valuing an organ procured in a market transaction as simply
or nearly reduced to its exchange value.
Furthermore, as Renee Fox and Judith Swayze poignantly taught
us in their travel log through transplantation the moral significance
of a donated organ is not exhaustively understood by conceiving
of donation as simply a gift. Complex interactions of guilt, residual
resentments on the part of the recipient for persistent feelings
of indebtedness to the donor, family pressures on both the donor
to donate and the recipient to receive the donation and justifiably
or not accept the moral responsibility for the transplantation's
success or failure all contribute to what Fox and Swayze termed
"the tyranny of the gift" and to quote from their book,
Spare Parts, "the psychological and moral burden is
especially onerous because the gift the recipient has received from
the donor is so extraordinary that it is inherently unreciprocal.
As a consequence, the giver, the receiver and their families may
find themselves locked in a credit/debtor vise that binds them to
one another in a mutually fettering way."
If by the expansion of the waiting list
and waiting times for organs the availability of a living donor becomes
the only plausible means of receiving a transplant, the desperation of
recipients will strain the gift relationship to its breaking point. In
my view regardless of one's views of the market in organs, that
state of affairs is properly understood as a crisis.
So then what is it that I'm arguing
for? In the paper submitted to the Council for their review, I argue
in favor of a regulated market in organs from living vendors. I
don't discuss a market in organs from the deceased. I don't
have any in-principle objections to such a market. Rather I think for
empirical reasons it would simply be inadequate to the challenge at
The United States is facing an epidemic of
end stage renal disease. By 2010, the number of patients with ESRD is
expected to nearly double to 650,000 and the waiting time for deceased
general organs will increase to 100,000 to 120,000, nearly double the
current waiting list of 65,000. Patients without a living donor with
blood types O or B now face median waiting times that exceed their
median life spans.
The average mortality rate of a patient
who initiates dialysis is 60 percent. That's 60 percent dead at
five years. The current national median waiting time for a kidney for
recipients with blood type O is fives years and for recipients of blood
type B the median wait time exceeds five years but we don't yet
know by how much. But 2010 the waiting times for deceased general
organs will double and in short of a radical restructuring of the
procurement system, this state of affairs will exclude the vast
majority of recipients from ever receiving a transplant simply by
attrition from death.
For those without a living donor, the list
will degenerate into an equal opportunity to die waiting and at the
current rate of growth the number of living and deceased donor
transplants of 10 percent per year by 2010 we'll be able to offer
about one in 20 patients with ESRD a transplant though the waiting time
may approach nine or ten years unless a living donor can be identified
and those few still alive will have endured the physiologic toll of a
decades worth of dialysis rendering many simply untransplantable.
Since the recent Institute of Medicine
report focused primarily on a market of organs from the deceased, let
me briefly address this point. First, the organ donor collaborative
has successfully improved to procurement rates of organs from eligible
deceased donors up to 70 percent or higher in a number of organ
procurement organization areas. But even if the procurement rate was
100 percent, the increased number of organs from the deceased is far
outstripped by the growth in demand for organs since the best estimates
of the number of eligible deceased donors by brain death criteria is
about 10,500 to 13,000 annually.
Spain which sets the international
benchmark for successful organ procurement strategies from deceased
donors only has a procurement rate of 75 percent of eligible deceased
donors after brain death. An increase in the number of organs from
so-called "controlled donors" after cardiac death has been an
important component of the rate of growth in the number of organs
available for transplantation. But again, the HRSA estimate is that
the number of DCDD donors available by the year 2013 will be 2,018
additional donors. This would represent an important contribution but
will not approach the coming demand and a reliance on so-called
"uncontrolled donors" after cardiac death which the IOM
report suggested might identify an additional 22,000 donors per year is
fraught with moral and logistical difficulties and yields organs which
will likely result in higher rates of complications in the post
operative period. I have an extended criticism of uncontrolled
donation after cardiac death which is the in the footnote which will
Among the many advantages of a regulated
market in organs from living vendors in contrast with the market in
organs from the deceased are an increase in the number of organs
available for transplantation on a scale that more plausibly approaches
the current and future demand, a concomitant reduction perhaps even
elimination of the root cause of international organ trafficking and
unregulated internet solicitation. The opportunity for truly
altruistic living donors to donate largely free of the incessant moral
and emotional pressures of the desperation of their designated
recipient, an increase in the frequency of preemptive transplantation
which confers graphs of rival benefit that exceeds transplantation
after any amount of time on dialysis, the identification of a cohort of
living vendors who are at the very lowest risk for long-term adverse
outcomes eliminating another competing pressure on current and future
living donors with comorbidities which are relative contraindications
to donation, organs which on the whole are transplantable with fewer
operative and immunologic complications as well as vastly improved
long-term outcomes, the leisure of time to carefully undertake all
forms of vendor screening, organs from deceased donors are procured,
screened and allocated under nontrivial time pressure, the opportunity
and this is very important for highly sensitive patients who are
immunologically ineligible for the vast majority of available living
and deceased donors to be transplanted without undergoing a highly
morbid procedure of desensitization. Some 30 percent of people on the
waiting list have some titer of antibodies against human antigens which
excludes them from getting many kidneys even when their blood type is
common. And for the organ vendor, an opportunity to improve the lives
of others through an agreed-upon exchange for consideration that the
vendor deems valuable in a manner that is safe and respectful of the
agent's moral agency.
As a condition of moral defensibility, I
argue that a market in organs from living vendors must fulfill four
sides constraints: first, the priority of safety for the vendor and the
recipient; second, transparency regarding risks to the vendor and the
recipient and regarding institutional outcomes for followup care;
institutional integrity with regard to establishing guidelines which
broadly reflect the conditions under which a given institution will and
will not participate in organ vending including a mechanism of
mediating institutional financial conflicts of interest; and finally
operation under a rule of law providing an avenue of enforceable
redress if contractual obligations are violated.
Before discussing these in detail, I want
to emphasize that a regulated market in organs does not pretend to
exhaust the list of obligations owed to donors, vendors and recipients
just as the law does not exhaustively catalog one's moral
obligations to one's self or others. Nor does a market ignore,
dissolve or rationalize away the manifest, deep moral differences
between those who find cooperation with the regulated organ market
acceptable and those who judge it a grave moral violation. Just as
there will always be physicians who will not cooperate with vendors
under any circumstances, there will also be recipients who hold similar
moral commitments. The salient difference is that in a market these
forms of cooperation need no longer take place under the conditions of
desperation fostered by shortage.
A living vendor market first and foremost
must be safe. Safety has both moral value and market value. The moral
value of safety is an extension of the commitment to the medical
professionals to non-maleficence. That is to avoid causing harm to
those under one's care. Meeting this obligation entails treating
donors, recipients and vendors in a manner consistent with the current
state of knowledge regarding best practices and standards of care. In
accepting this responsibility, individual physicians are therefore
under no moral or legal obligation to participate in a vendor exchange
if it is their considered opinion that either the vendor or the
recipient is medically or psychologically unsuitable. Evidence-based
guidelines regarding the pre transplant evaluation of donors should
apply equally to the evaluation of vendors ironically.
A favorable consequence of prioritizing
safe practices in evaluating potential living vendors is that the
standards of vendors will likely be far more stringent than those
currently applied to donors. Since valuable consideration can be
anything that vendors identify as valuable to them, incentive
structures can be designed so that the priority of safe practices
directly intercepts with the valuable consideration exchanged.
Morally speaking, very little terms on
what the valuable consideration actually is. Rather the moral
defensibility of the consideration is predicated on whether or not the
exchanges satisfies the side constraints. Example and this is just an
example, imagine that the Federal Government puts up for competitive
bid a contract for lifetime health insurance for donors and vendors
alike awarded immediately upon donating or vending an organ. Part of
the responsibility of the insurance company that wins the bids is a
commitment to provide annual physicals, routine medical screening and
long-term followup in addition to standard medical coverage for
non-donating and vending related health issues.
Such an arrangement would serve a number
of interests. First, it would provide donors and vendors with
long-term health insurance, by any measure a valuable consideration.
Second, it provides the transplant community with a funded mechanism
whereby the long-term outcomes of donors and vendors can be carefully
studied and aberrancies can be identified, analyzed and addressed. And
third, it structures the incentives for the insurance companies in a
number of mutually-attractive ways. The donor and vendor pool
represents a cohort of people who at the lowest risk for future medical
problems and who are therefore the least expensive to insure.
Interestingly, for those concerned about a
market exploiting only the poorest among us, an incentive structured in
this fashion may actually exclude from vending those in the lowest
socio-economic strata since there is good evidence that membership in
this strata increases the risk of developing chronic kidney disease and
I include in some footnotes a handful of references to document data.
The second side constraint, transparency
is an extension of the physician's obligation to truth-telling, a
component of respect for the moral agency of donors, vendors and
recipients and by transparency, I mean a forthright disclosure of the
risks involved to donors, vendors and recipients insofar as they are
known as well as the disclosure of what is pertinent but as yet is not
known. Included under the rubric of transparency is an obligation on
the part of the transplant community to extend our knowledge of
long-term outcomes for donors, vendors and recipients.
The third side constraint is that of
institutional integrity by which I mean establishing procedural
assurances whereby institutions can cooperate or not with vendors
according to the dictates of their stated mission. As a matter of
policy, a health care institution might abjure any cooperation with
living vendors with perhaps modest exceptions for emergencies.
Alternatively, an institution might cooperate with vendors on a limited
basis and individual practitioners might be given the choice to
cooperate or not with living vendors similar I might add to current
arrangements with living donors.
The point is that the specific content of
individual institutional policies would be less relevant than that
institution's formulated policies that accurately articulate the
moral commitments of the institution and that such policies may have
side constraints. Formulating such policies as an extension of the
side constraint of transparency, recipient candidates are not neutral
on the subject of organ vending and some will find it inconsistent with
their moral commitments, but the genius of an organ market is that it
permits like-minded donors, recipients and health care professionals
committed to donation and opposed to organ vending to freely cooperate
mutually attaching moral value to certain ways in which organs are or
are not procured commensurate with their common moral commitments.
Of course, individuals and institutions
constituent of these donor-only communities would benefit indirectly
from an organ market by reducing the overall demand for organs. Still
recipients who choose to abstain from cooperating with organ vendors
for moral reasons could do so even unto death. Conversely, recipients
who are willing to cooperate with organ vendors are also entitled to
know a priori the position of their transplant institution on the
subject of organ vending since a failure to disclose this would be a
grave violation of respect of the moral agency of the recipient in
At this point, it's useful to explain
what I mean by the "right" to vend an organ. I conceive of
the right to vend as a right of forbearance which is to say a
noninterference right. The right to vend understood in this way does
not imply a correlative obligation on the part of individuals or
institutions to cooperate with any individual vendor. Instances in
which cooperating with a vendor would in the judgment of a transplant
professional violate the side constraints of safety, the obligation is
explicit. No cooperation.
After all, the only value of a market
relationship is instrumental. The primary purpose of an organ market
is not to enrich vendors or solve the problem of the uninsured or
anything else except relieving the suffering of recipients without
transferring that suffering or harm to donors or vendors in the
process. In this sense, a regulated market in organs represents what
is best and morally nonnegotiable in the current system of organ
The final side constraint is the creation
and application of the rule of law to a market in organs. Legislative
oversight of a organ market is necessary to ensure that the standards
of safety are met, to ensure good faith enforcement of contracts
between vendors and other entities and to protect against fraud.
Ideally, the law should serve as a side constraint on other means of
assuring institutional integrity such as the accrediting powers of
professional organizations with voluntary membership.
In this, I endorse an argument made by
James Buchanan wherein the rule of law should have two basic functions,
first a productive function which facilitates freely agreed-to
arrangements between individuals and institutions and a protective
function which protects the contractual and forbearance rights of
vendors, donors, recipients, professionals and institutions. The
productive functions of law include provisions for a common market in
which potential vendors and institutions can meet and negotiate
transactional terms. The protective functions of the law might include
designing sample contracts that satisfy the side constraints of safety
and transparency, offering adjudication and mediation mechanisms for
resolving a range of contractual disputes and mediating conflicts of
interest like financial inducements to increase vending through the
subversion of safe practices.
Now I know this all sounds rather
legalistic and so it is. Ideally, the rule of law permits those with
the best intentions to cooperate without interference and sharply
proscribes the activity of those with the worst intentions. But to
repeat an earlier point, the rule of law in no way exhausts obligations
physicians owe to donors, vendors and recipients. However on some,
hopefully very infrequent occasions, the rule of law prescribes the
bare minimum of obligation.
So how would all of this work in
practice? For those expecting an endorsement of a particular set of
financial incentives for organ procurement, I will disappoint you on
purpose for two reasons. First in my view the specific nature of the
incentive is only morally relevant insofar as the exchange of an organ
from a vendor for the incentive is commensurate with the moral side
constraints I've outlined and, second, to endorse the single
example of a morally-permissible valuable consideration would be to
engage in the economic equivalent of price fixing with all the pitfalls
which follow. Again, the elegance of the concept of valuable
consideration is that it is indexed to what individual vendors conceive
of as valuable to them what you or I or someone else presumes to be
valuable to them.
So as to the structure of an organ market,
I think the best approach is to permit a variety of different types of
valuable consideration to be exchanged subject to meeting the moral
requirements of the side constraints. The virtue of this approach is
that by giving wide latitude to the specifics of valuable consideration
the resulting plurality of arrangements are also the most likely to be
After all, any incentive structure however
mortally defensible must actually work. That is to say it must
actually substantially increase the number of available organs.
Incentives which don't work should be discarded and a simple way of
doing this is to offer a list, some types of valuable consideration and
prevent the vendor but to choose from among them. Determination as to
whether specific arrangements and incentives fulfill the side
constraints is a judgment best made a priori with oversight from a
separate entity held responsible for tracking defined outcomes of
Ultimately, I think that the list of
possible vendor-recipient exchanges which are also practically feasible
and which also meet the side constraints will be finite and that
institutions cooperating with vendors will be able to rapidly generate
a fairly standard list of options. As to the side constraints, the
most recent decree by Health and Human Services empowering UNOS and the
OPGN to generate evidence-based guidelines for the evaluation and
long-term followup of living donors and assume a modicum of regulatory
responsibility for its implementation could easily be tailored to
vendors as well.
There have been several proposals for
pilot studies of financial incentives for organ procurement and here I
would insert a caveat. It's quite easy to design a pilot study of
financial incentives that is certain to fail. Any incentive regardless
of whether it meets the side constraints which fails to increase the
number of organs fails as an incentive as well. The failure of a
single incentive to increase the number of organs does not imply a
failure of a market to increase the number of organs.
Concerns have been raised in many quarters
about who organ vendors would be and specifically whether vendors would
inevitably come from the poorest or otherwise most vulnerable among us
and here I would like to make a few distinctions. First, by
definition, the forbearance right of vendors qua right of forbearance
cannot supercede the side constraint of safety and institutional
integrity. As previously mentioned, the poorest among us are also at
higher risk for the development of kidney disease as well as the risk
factors for cardiovascular disease which would be accelerated in the
setting of unilateral nephrectomy and this epidemiologic fact alone may
be morally sufficient for to exclude the poorest among us from
eligibility for organ vending.
Second, it would be clear that
justification for excluding the poorest among us would not be because
vendors are somehow rendered incapable of autonomous decision making by
virtue of their poverty. The justification is that cooperating with
them as vendors violates the side constraints.
Third, a regulated market subject to side
constraints should be sharply distinguished from the current practice
of organ trafficking which is subject to no constraints whatsoever.
And finally, vulnerability is not limited
to those who are impoverished. Those concerned about the vulnerability
of vendors should be equally concerned by the magnified vulnerability
of living donors in the absence of a plausible solution to the shortage
So to conclude, public policy in renal transplantation is at a
crossroads. There is not serious disagreement regarding the forecasted
increase in demand for organs in the next decade nor about the fact
that current strategies and proposed reforms for organ procurement
are vastly insufficient to meet this demand. As the waiting lists
and waiting times expand, the hopes of transplant recipients are
fading. This is not a hope for eternal life, but a hope that they
might be spared a life cut short too soon.
It's a hope that was dashed for the
3,500 who died on the list last year waiting for a kidney as well as
all who cared about them and who cared for them. None of this
justifies policies that treat people as spare parts or any other
epithet denoting organ vendors as less than the moral agents that they
unmistakably are. But taking the moral agency of organ vendors
seriously entails abandoning the easy but ultimately false
generalizations about the moral and psychological makeup of vendors and
work-a-day dismissals of a market solutions.
These generalizations reduce vendors to
characters in a passion play about exploitation and greed rather than
understanding them as human beings capable of fashioning and acting on
their own moral commitments, hopes and aspirations. Mine is not an
argument that the ends justify the means. The argument is that the
means themselves as I have argued for them here do not warrant legal
prohibition. Thanks you.
CHAIRMAN PELLEGRINO: Professor
Schaub, one of our Council members, will now open the discussion on
both papers. Thank you.
PROFESSOR SCHAUB: It's been a
long day. We've gone over the data, the philosophy and the ethics
of organ transplantation and procurement and now it's time to look
at policy proposals. At the end of the day, we must face the question
"What is to be done?" To help us out, we have two
well-developed and thoughtfully articulated proposals on the table, one
which focused on deceased donation, the other on living donation. I
want to thank both presenters for their appearance here and even more
for their work that they've done on this issue.
The first report from Dr. Childress and
his committee at the Institute of Medicine stays largely within the
current framework. As he says, it might be described as a conservative
contribution. It specifies a number of ways by which the rate of
deceased donation might be increased without departing at least for the
near term from the ethical norms and assumptions of the existing
By contrast, Dr. Hippen along with an
apparently growing number of others calls for a radical departure from
previous practice. He calls for a shift from deceased donors to living
vendors. In his article and here today, he's argued for the
morality of a regulated market in organs.
I have a couple of questions for each of
you. Dr. Childress, I very much appreciate the thorough attempt your
group has made to improve the procurement system and increase the rate
of deceased donation, but even if all that you recommend is done, how
much difference will it make?
Dr. Hippen seems to begin from the
assumption that any system dependent on donation is simply inadequate.
Do you disagree or if you agree that the donation numbers will
inevitably fall short of demand would you also move eventually toward
quality firm market solution?
On page 201 of the report, the committee recommends against financial
incentives in the case of deceased donors, and the report reiterates
that opposition even more strongly opposition to the sale of organs
in the chapter of living donation, but that negative judgment does
not seem to be made on principle. The report says "the use
of financial incentives to increase the supply of transplantable
organs from deceased individuals should not be promoted at this
time." Why the qualifier "at this time"?
I was particularly interested in this locution which turned up at other
key moments in the report. For instance, and you went over this
today, the report recommends that "at this time, the current
system of voluntary express consent should not be replaced with
either a system of mandated choice where individuals must indicate
yes or no for organ donation or a system of presumed consent where
individuals are presumed to have said yes unless they actively say
However, the committee clearly, your
committee clearly, would like to move toward a system of presumed
consent in the future and to that end they recommend a campaign to
change public opinion. I'm sure you're right to focus on
public sentiment for as Abraham Lincoln said, "Without it, nothing
can succeed." But I'm not altogether certain about the
goodness of the reform that you propose.
The report states that the education of
public opinion mostly involves relieving people of their fears and
misconceptions about organ donation and transplantation and then
further presenting donation itself as a decision to be made from a
combination of self interest and social responsibility. Basically,
it's in one's own long-term self interest to be willing to
donate parts of oneself or at least parts of one's former self to
one's fellow citizens.
How would you respond to the arguments
laid out by Leon Kass and Gil Meilaender that there may be more at work
in resistance to organ donation than fears and misconceptions? That
there may be instead some deep-seeded wisdom about the body and its
Finally, if people's lingering
hesitancy or reluctancy did disappear as a result of the
attitude-changing efforts that you recommend, why would a presumed
consent policy be necessary? At that point, wouldn't a policy of
expressed consent be working just fine and producing high donation
rates? Might there not be reasons to prefer expressed consent, reasons
that go considerably beyond the question of organ donation?
We modern folks out of the best of motives
might be able to forget about or overcome our natural antipathy to the
violation of corpses but I would hate for Americans in particular to
forfeit their stubborn insistence on real consent. Certain elements of
national character may serve as constraints upon our policy options. I
happen mostly to admire those elements of the national character, but
even if I didn't, I'm not certain I would want to challenge
My appeal to national character or the
general spirit of the nation as grounds on which to reject a system of
presumed consent and even more a system of organ conscription might
suggests that Dr. Hippen's route is the way to go. The commercial
spirit is surely a big part of the American spirit, but respecting
national character does not require us to give the commercial spirit
completely free reign particularly if the case can be made that both
reason and the commercial tradition itself disallows certain types of
Dr. Hippen says in his paper that "an
organ vendor in a regulated market would be treated as an end in
himself inasmuch as his safety and contractual rights would be
protected by the rule of law." Are those the only items, safety
and contractual rights, that must be protected in order for the demands
of human dignity to be met? Are there any regulated markets that you
would find morally impermissible, say legalized state supervised
prostitution? In other words, how far does the right to vend go? Is
there anything about the human body that makes gift rather than sale
the proper course to follow?
CHAIRMAN PELLEGRINO: Thank you
very much. Do we have a response from the presenters.
DR. CHILDRESS: Yes. Thank you
very much. I'll join Ed in thanking you for the presentation and
for the questions. I think they are very important ones. Let me just
address a few of them.
First of all, we approached this from the
standpoint of trying to formulate ethically acceptable and even in
places ideal public policy in a particular society and culture at this
time. We felt on the basis of the evidence that we had seen that
indeed a lot of progress was being made in several different areas
including the kinds of systems that have generated in a number of
institutions up to 70, 75 percent of consent rates from potential
donors, donors and/or their families for donation. That this is
something that can really help us get a substantially large number,
larger number, of those who within our current pool have been declared
dead by neurological standards.
So we think that considerably more
progress can be made there as well as putting more emphasis on
education and yes, we did talk about some of the myths and
misconceptions and it's not clear, and this is a matter for the
study, it's not clear how many of the conceptions that work that
people have and I won't characterize them here as misconceptions
would actually be close to the sorts of concerns that both Gil and Leon
and then also in Eric's paper have identified. I think that merits
Actually in the context of discussions I
have with individuals inside and outside organ transplantation and
members of the public, those concerns may be below the surface. They
rarely get raised. The other kinds of concerns get raised and I think
this is one of the important things about the kind of analysis that the
President's Council may be able to undertake and that is to dig
more deeply into some of those fundamental, philosophical, and here
I'm going to use a term, mythological not in a pejorative sense
because they in part have to do with some of the fundamental myths that
we have that structurally we think they could well be at work and I
think we might well look more closely at that.
Now in add to the current policies and
practices that seem to be making considerable progress, again our
radical proposal was to move toward, and you wrote this and addressed
this in your comments, move toward getting more donations from those
who are declared dead by circulatory standards. That is a radical
departure from current practice. It is a very promising one and I
think it's actually one the public would be more inclined to accept
Professionals have grown very comfortable
with the notion of brain death. It's a fairly orderly way to
perceive, fairly set and so forth. It's not as messy as dealing
with uncontrolled donation starting outside the hospital setting. So
it may well be that this is one where after all people are quite
familiar with people dying according to circulatory standards.
That's the way most of us are declared dead.
Now that's not to say that there are
issues and there are several that would have to be addressed to go in
this direction and we identified some of those, but I think at least
pilot studies could establish whether indeed this is the way to go. At
this time then is our indication that we have some confidence that what
is already in place and being further developed and then with this
expansion of the donor pool could help to alleviate but probably not
eliminate the shortage.
Then the question really is whether we want to go in the direction
of living market and I have serious reservations about that, ethical
reservations. Some of them do relate to concerns about comodification
and what happens when we move this direction and start thinking
about ourselves as potential sources of organs that can be bought
and sold and I'm concerned and I've raised this with Ben
whose work I very much appreciate and Sally Satel whose work I also
appreciate that the Kaiser regulatory mechanisms that are put into
place even if we don't think they are intrinsically wrong to
go in the direction of a market haven't yet convinced me that
there aren't still serious ethical problems relating to if not
coercion at least exploitation and so I would need to be, receive
a lot more information about and have a much more serious and sustained
discussion before I would be convinced that we've been able
and what's being proposed to avoid those sorts of things.
So I guess those would be my main
comments. One last point which actually has to do with your more
negative comments about presumed consent. I think that the discussion
of presumed consent among the Council got off to a bad start by virtue
of Bob Beech's discussion. Bob is talking about implementing that
sort of policy in our society as it stands where indeed it would be
problematic for precisely the reasons he indicates.
But a society could move in directions
that would say on the basis of reciprocity which we've taken here
to be an important consideration in which we're all members of a
system and so forth that society could well move in that direction and
we have all sorts of default mechanisms in which we will accept silence
or tacit consent or approval as a basis for operation, but it would
have to be very careful developed. So in suggesting at this time for a
number of these possibilities, I'm not suggesting that everyone on
the committee would indeed say if we don't obtain enough organs
than we ought to move in these following directions. But rather it
would be a matter for reconsideration and that would be true for
presumed consent. It would be true for mandated choice. And it would
be true for financial incentives as well.
Thank you and I hope that partially
addressed the important points you raised.
CHAIRMAN PELLEGRINO: Dr. Hippen.
DR. HIPPEN: Thank you. I guess
I'll first take the question of whether what I endorse is free
reign for an unrestrained market and I would say it's certainly
not. I think that the side constraints that I outlined are as my
mentor, Tristam Engelhardt, might say thick in the sense that they
sharply curtail a number of different vendor relationships that would
be out of bounds.
I also think I should reiterate that the
side constraints that I argue for are the conditions for moral
permissibility but they do not exhaust our moral obligations to donors,
vendors and recipients. I can talk a little bit more about that in the
subsequent discussion, but I think one also has to be careful of the
hazard of excluding by omission. The obligations to vendors in this
case are perhaps best not cataloged but identified and may well arise
relative to whatever arrangements are being made. So in that sense,
no, the side constraints do not exhaust what physicians would owe
vendors in such a system.
I also want to talk a little bit about analogous systems like
prostitution and here again, I think a certain conceptual care needs
to be taken to avoid equivocating prostitution with vending. Now
some will actually equivocate that. I would sharply disagree, but
on the issue of prostitution as a regulated market, we do in fact
have legalized prostitution in at least one state in the Union.
But the permissibility and regulation under law in no way, I think,
entails its moral endorsement and I want to cling to that distinction
between what the law permits and what morality requires.
And along those lines, you quoted me to
the effect of saying that I believe that we should treat organ vendors
as an end in themselves and that is correct. I believe that is the
beginning of how physicians and the rest of us live up to the
obligations we have to one another which is to treat each other as
observed as an end in oneself. But that is the beginning, certainly
not the sum total of what we owe to each other.
CHAIRMAN PELLEGRINO: Leon.
DR. KASS: Thank you. Thanks to
both of you for really an excellent presentation and very stimulating
things. Let me make a couple of comments on terms and then move to a
question for each of you if I might.
We had some discussion this morning about
crisis. I would simply at least personally flag for similar attention
the notion of epidemic that's been tossed around here a few times.
Unless I'm wrong, there's still a element of communicability
with respect to epidemic. Things could be on a very large scale and
very worrisome, but you produce a different kind of social response if
you're thinking of a plague than if you're thinking of a
massive set of diseases.
Similarly, on the business of altruism, I
don't think I've used the term. I don't think Gil's
paper uses it partly because it really does deal with motives and I
think Gil and I are not so much interested in the complicated motives
why people might give, but more interested in the fact that as between
a gift and a sale we're on the side of giving. And that goes also
to your comments about there are multiple kinds of values subjectively
held by the people who might nevertheless engage in a sale. I think
psychological things are true and I think very important, but they
don't finely cut the ice on the final question.
And lastly, on the subject of terminology,
I know why vendor is a replacement for donor because we begin with the
language of donor, but I find it already an interesting slip when we
begin to refer to people as "living vendors" as if that is
somehow the way they come to regard themselves at least for these
purposes. Those linguistic terms have moral freight and we should be
attentive to them.
Two questions. For Jim, I think you
partly answered this in your response to Diana, but if you were moving
in the direction of presumed consent as you've nicely distinguished
it from salvage, could you state what the sort of political, social,
anthropological theory is that would lead you to support this other
than the utilitarian argument it's going to get us more organs
because the burden of proof is on people to sort of opt out? What the
ground of saying the organs belong to the community unless you object
and I'd like to hear you say something on that.
And for you, Dr. Hippen, it's your libertarianism that I want to
press. The notion that moral permissibility does not require, does
not translate into approval. That's correct. But if you somehow
went from a system which said we outlaw prostitution to a system
which says it's legal but we don't approve of it or if you
go from saying we're now going to allow people to sell themselves
into bondage, absolutely voluntary, we'll set up a nice hospital
committee to check them out to make sure we know what they're
doing because they want to pay for their children's education,
that would be a transformation of the societal view on what it means
to own another human being even if with consent.
So when you say that the burden of proof lies with those who would
stand in the way of the rights of individuals to vend if they so
wished, in other words to get out of the way, you're not looking
for approval, you just want these restraints relaxed, (a) I think
it's tantamount to a kind of approval if you go from a system
which says that something is outlawed to saying it's now tolerable,
but (b) I don't see why my side has the burden of proof since
I think what's being protected in the proscription of buying
and selling is something deep and you have to, I think, show why
that should be overturned and to say that lives will be saved isn't
a sufficient reason. That would be a challenge to you.
DR. CHILDRESS: Thanks Leon as
always. A couple of comments on terms and I was here this morning for
the discussion and I don't recall any discussion this afternoon how
the term altruism appeared, but I would at least note that in
Eric's paper, it seems to me that a lot of it is used in a way that
captures a lot of that. So I was probably running too many things
together at that point when I was talking about it and thinking I very
much agree that we can have all sorts of motives within a donation
system and that keeping those distinguished is very important. You can
just have altruism operative in the kind of system that Ben has
Second, living vendors, I was one of those
a number of years ago who started pushing the term "vendor"
in part because it seemed to me to be for those who were proposing some
kind of market mechanism that in effect they were mixing worlds by
talking about basically those who sell as donors, but donation does
have as you rightly said and it seems to me it's with your model
that donation does have some things to characterize it and then to talk
about those who are selling their organs as donors, paid donors, is
already to mix worlds. So by pushing vendor, it was trying to say then
you have to argue for this in terms of the nature of the transaction.
In terms of presumed consent, and I
didn't I realize address part of Professor Schaub's comment as
well, I guess I would suggest and I'll try to do both in response
to Leon's comment and Professor Schaub's why I would say the
organs belong to the community unless you object. I guess the way I
would think about this is you have transferred the organs to the
community unless you object. A simple example I use with my student I
think actually makes the point very well that we have a variety of ways
we accept certain possibilities by doing so tacitly. I mean love is
used to get the notion of tacit consent that may be problematic, but
it's a way to start thinking about this.
I tell my students I'm going to cancel
the final exam unless you object. Their silence I think can be
appropriately counted as consent, but there has to be understanding,
there has to be voluntariness, etc. before we find it. Now it seems to
me that that would be an idealized model of presumed consent, but
nevertheless and presumed consent, I think we stayed with that term,
but in many ways it's an inappropriate term.
It would be better just to talk about it
as tacit consent or silent consent and that means in response to your
earlier comment this is real concept. What Bob Beech was talking about
was hypothetical consent and what people would do if they were asked
and they know that many would not and so forth. This is talking about
it in the context of social practices where people understand and they
know that they have express or silent and a variety of other way of
responding. That may not be realistic and you're right perhaps
that if it were possible it might be an unnecessary parallel to the
point made about mandated choice.
Then the last observation I would make in
distinguishing routine salvaging and routine removal and the like from
the model of presumed or tacit consent, I focused on the ownership
side, but there is another way. That is who actually owns the organs
and thus who is involved in the transfer. But there is another part
that's important and that really is a system of silent consent or
presumed consent. Then there's a heavy educational burden on the
part of the state of society, not so if there is routine salvage or
conscription. That may not even be part of it. There's a
possibility of opting out in both, but it really is a presumed consent
that is going to make sure it's understanding and voluntary consent
even if expressed silently.
Then you need probably need more even than
you have in the expressed consent model because at least there you take
the action of expressing it as better evidence of the person's
choice than the silence and the silence is worrisome in part.
That's why most of the systems that have this and it's not
clear whether they have routine removal or presumed consent tend to
check with the family just to make sure.
DR. HIPPEN: Thank you.
That's a beautiful question actually and I have two points in
response. First, I think again it's important to be careful before
making analogies between a regulated market in organs from vendors and
other kinds of markets because any other sort of markets in things like
prostitution or what have you have lots of connotations and if
we're going to make such comparisons we need to follow through on
On the strictly legal versus permissible
or permission versus endorsement point, I would suggest that the fact
that in Nevada prostitution is legal has not widely, broadly increased
moral support for prostitution. So the level on which introduction a
regulated market in living vendors would damage something deep and
metaphysical may be the case, but I really don't know how to
adjudicate that claim because I just don't know what the terms of
the debate are. That's neither here nor there. We can perhaps
that discussion at greater length.
But I would want to emphasize though a market in organs from vendors
is so that people don't have to unnecessarily suffer and die,
but there are other reasons as well because this all occurs within
a larger social context. Last year, the Federal Government alone
not counting private insurance spent $17 billion on the care of
patients with end stage kidney disease. But 2010 that's going
to be in Federal dollars only $28 billion and to spark my latent
libertarianism, $28 billion of tax money from people who earn it
and pay the Federal Government this money. It's going for the
care of these people and I think it should. I feel that these patients
are a part of my moral community, so conflict of interest.
But the other issue there is that as the waiting time increases
there will be damage to altruism. I do care about altruism. I
think it's a privilege of what I do. It's the opportunity
to interact with living donors. These are a remarkable group of
people and some of them remind me of Kierkegaard's Fear and
Trembling when he talks about the knight of faith.
The knight of faith is the guy who goes
and hears the sermon on Sunday about Abraham and Isaac and Isaac being
taken up in the mountain and God commanding him to be killed and
Kierkegaard marvels at that fact that here's this guy. He's
drinking his Starbucks coffee and he's eating his bagel and the
moral import of what God has commanded Abraham to do he just kind of
lives with it.
And that's remarkable to me in
interacting with living donors is how unremarkable it is for so many of
them. "Well, of course, I would donate my kidney. Of course, I
would. It's my mother. It's my sister. Of course, I
would." And so amidst everything that's been written about
living donors and lionizing them and rightly so, they really sort of
take it stride. But I think that is being damaged. I think that is
being strained to its limits by this problem and for that reason I do
think it's a problem and I do think it is a crisis because that is
a deep moral reflex that is being challenged and stretched to its
And the other issue here is that with the increase in demand for organs
and with the knowledge we are no longer in Eden when it comes to
transplantation with the knowledge that this is an opportunity for
people to live longer and better lives a failure to address this
in an plausible way will increase the manifestly immoral practice
of organ trafficking, a practice which is unsafe for vendors, unsafe
for recipients, something I have no difficulty categorizing as exploitative.
All of these are consequences of a failure to address this issue
in the most plausible way. I do not believe any of the suggestions
made by the IOM address this in a plausible way and I feel a moral
responsibility based on knowing this to advocate something that
I think can be done in a morally permissible way that will address
And the last thing I want to just say and then I'll turn it
back over is you know to characterize organ vendors as selling themselves
is I think phenomenalogically inaccurate. Vendors aren't selling
themselves. They are selling a nonessential organ and that is different.
To sell one's self is to in a sense abdicate one's own moral
responsibility. That is manifestly not the case in the sort of thing
that I'm talking about and by the way, they are not selling
their kidney to make soap. They are selling their kidney to help
somebody else, possibly also themselves and I stipulate that some
people who do this may do it for reasons that have no moral value
whatsoever, may even be immoral. But I believe this is the only
way we can truly and plausibly address this problem [which will
have] multiple consequences if we don't [solve it], not just
CHAIRMAN PELLEGRINO: I have three
requests for comment, Schneider, Meilaender and Gomez-Lobo. We have
exceeded our time but we will extend it in the following way. I will
ask them to present their questions. I will ask the respondents to
hold off until the questions have come through and then I'll give
you an opportunity to pick one or two of them lest we go on for too
long. So we'll begin with Professor Schneider.
PROFESSOR SCHNEIDER: With
extraordinary self-discipline, I will stop myself from commenting on
the presumed consent question which lawyers have a lot to say about and
instead say that what I've missed in a lot of the conversation is
the point I made earlier in the day that very often when we have people
from whom we want something but do not want to actually pay them for it
and when those people are giving up something in order to give us what
we want we pay them for their trouble and the expenses and their
genuine difficulties that they have and not for the item that we're
So with foster parents, we pay foster
parents because it's a lot of expressed cost to be a foster
parent. We don't necessarily pay them an extra profit on top of
that and with many other kinds of goods as well.
CHAIRMAN PELLEGRINO: Thank you.
PROFESSOR MEILAENDER: I'll
just for Jim Childress mainly I would thank you for the directions you
offered. I thought that was helpful. I had a couple questions I
wanted to ask you. I'll just ask one about the IOM report that
I'd be interested in hearing what you had to say with respect to
the category in which you suggest if we push on it, these uncontrolled
So I'm at work. My wife keels over at
the library say. They call 911. They come. They pick her up. They
try to resuscitate her on the way, but decide that it just is
impossible. So they start injecting her with stuff to preserve the
organs and it takes them an hour and a half to track me down wherever I
am and I finally get over the hospital. Don't you think I ought to
just kind of sit at her bedside for awhile without answering a bunch of
questions about whether they should continue with this procedure to
preserve her organs and whether it's okay to donate them and so
I understand that here is an unexploited
possibility and yet it just seems that it goes the wrong direction
contrary to what — I mean we've worried about inhumanity in dying
in so many other ways and now in order to get these organs you
recommend that and I'd just be interested in hearing how you would
respond to that.
Dr. Hippen, I don't even know if I can
make this question entirely clear, but you're sort of interested in
the tyranny of the gift which you think is the Fox-Swayze notion and
you put that forward as it were as support for your own move in the
market direction though Fox and Swayze certainly didn't think of
it. That was just one of the complications of the gift system as far
as they were concerned.
But could you just think about this a
little bit that you're right that the tyranny of the gift is
experienced in certain relationships that are inherently unreciprocal,
whereas it were one can almost never get back to an equal position with
somebody who gave you that gift of life and I suspect it's true
that one could overcome the tyranny of the gift by commodifying the
relationship in a way which would as it were look for a way to get back
There's a real tyranny of the gift in
the parent-child relationship. That's why children so often resent
their parents. You can never get back to an equal starting point with
your parents. We could commodify that relationship. That would be a
way of overcoming that the sort of natural resentment that that gift of
life builds in require children to provide over time certain kind of
reimbursement or something that attempted to bring them back to
equality. That would seem to be destructive of something fundamentally
human in a way.
So, yes, commodifying can overcome the
tyranny of the gift phenomenon but it's not clear we always want to
do it. Now that doesn't settle whether we want to do it in the
organ question or not, but it takes a little of the sting out of it it
seems to me and I would just like to hear your comment on it.
CHAIRMAN PELLEGRINO: Dr.
DR. GÓMEZ-LOBO: This is
something of an information question for Dr. Hippen. If we move to a
regulated market of organs for transplantation and if we consider that
we're in a global situation, how would it work in terms of the
purchase at a very low price of certain organs in certain countries?
That's exactly where I'm very scared about the exploitation
question. Thank you.
CHAIRMAN PELLEGRINO: Dr.
Childress. Dr. Hippen.
DR. CHILDRESS: Let me respond
quickly of three points. First of all, in relation to Carl
Schneider's comment, there has been a clear move toward providing
compensation for expenses, etc., for living donors. Now some talk of
this is removal of disincentives to donation and it can be viewed that
way. Others talk about it in terms of expression of gratitude to those
who are donating. Both in effect are important and that would be
separate from and not move as far as actually providing financial
incentives to donate.
Second, Gil's example, the way he
framed the question I thought was very interesting relative to his wife
and he asked me whether I thought he ought to go by the bedside and
just be there. And that seems to me to depend actually on your
wife's prior wishes and if you don't know those, what you think
would be appropriate in that context. So what I would say is that you
ought to have the right to make that choice in those circumstances and
that all starting the procedures before do is in effect preserve the
opportunity for you to make that choice. Now if she has a signed donor
card and is part of a registry if this were to be widely adopted, then
that would kick in and obviously be determinative and there are many
different ways to grieve and to mourn and this removal of an organ does
not eliminate all those but obviously the time factor is one that they
were focusing on and it's an important one.
And then if I might even though it was not addressed to me, I
would like to say a word about the global because I think that those
who are offering the regulated market don't pay enough attention
to that and second, I've heard this from for example a pediatric
surgeon in Pakistan who did a Ph.D. in religious studies and has
studied living donation is her worry about what despite the view
that what is legal is not moral as a matter of fact is symbolically
very significant and despite the criticism of the U.S. and the world
adopting a market would have profound ramifications for the world
and would set a kind of model that might be even more problematic
in other settings.
So I'm sorry to jump in on that one,
but it seems to be me a big issue that we've not talked about
DR. HIPPEN: Right. So let me start
with Dr. Meilaender's point. To go back to the example I gave by
Fox and Swayze, the tyranny in gift, the purposes and certainly not, I
should clarify this so that I do not get in trouble, to suggest that
all donor-recipient relationship are subject to the tyranny in the
gift. My suggestion was merely that to understand the relationship
between donor and recipient as a gift relationship is to miss the moral
ambiguities that come out in relationships between individuals and that
kind of plurality of experience is what makes humans rather more
interesting than molecules.
So the tyranny of the gift certainly
doesn't exhaust — So the idea is that the fact that an organ from
a donor is a gift does not exhaust or completely explain the moral
relationship between donor and recipient. It doesn't imply that
it's always a tyranny and hopefully is mostly not a tyranny. But
if the choice is between death or that person, I would suggest that it
may well become a tyranny and I do think that that's a real
I want to address the issue of reimbursing
parents and here I'm going to be shameless for a moment because one
of my parents is in the audience and I would like to trade a little bit
on the term that I used "valuable consideration." Again, the
virtue of valuable consideration rather than exchange value for
repaying a debt, in this case a moral debt, a familial debt, would be
grotesque if it were simply a cash payment. It would be something that
none of us really would recognize as in any way a filial obligation.
I'd like to think that what I'm doing here is in a sense a
reimbursement although that's a really crude way of putting it.
But it is in a sense fulfilling a filial obligation.
Likewise, in a market and you know I think part of the problem
is and I should have paid a little more attention to Dr. Kass's
linguistic hygiene here, market does imply cash money, but it need
not. It never has. Markets imply a protected area of exchange.
That exchange could be a swap as is done in recipient swaps which
Dr. Delmonico was instrumental in creating in this country and that's
a remarkable relationship. I would hate to think that — I
mean I do attach the label "market relationship" to that
but again, I really don't have the baggage that I think perhaps
others do and maybe it's just because I am in fact a libertarian
and so I perhaps have disabused myself of that.
To Dr. Gomez-Lobo's question, how would this work internationally,
I think that's a critically important question and I think Jim's
point about the United States being in some sense making things
permissible by going forward with it is one that has to be handled
with a little bit of care. And here I would sort of point out the
work of a fellow by the name of Vivekanand Jha, who is a remarkable
fellow, a nephrologist, in India and he and his colleague, K. S.
Chugh, have documented in some detail some of the horrors of organ
trafficking in India and one of the things that Dr. Jah observed
is that, a couple of things really.
One is that the underground market in
organs has removed the impetus for the state to create a deceased donor
program in India and the deceased donation is essentially at least when
I last read Dr. Jah's stuff was not up and running. Secondly, it
is not unusual even among family members in some of these countries to
exchange money. It's not understood that one is paying for an
organ. It is a consideration in the broader sense of the word
But let me get back. I'm sorry. The issue as to international
protections and globalization is one that needs to be addressed
in two ways. One is the way in which this debate got framed 20
years ago in testimony before the Senate of the National Organ Transplant
Act was that there was a physician named H. Barry Jacobs who told
a Senate subcommittee that he intended to start a business whereby
he would import people from developing countries, harvest their
organs and ship them back after paying them a pittance and that
subsequently relegated all arguments about organ markets to a reductio
ad absurdum like that and the struggle has been to crawl out
of that morass.
In my view any such arrangement would
violate the side constraints because there would simply be no — And
not just the side constraints but moral obligations to others that
physicians would have to vendors and I can dilate on that if you want,
but we're running out of time.
I do think that a regulated market in
organs can only take place within a political system and political and
economic system which is sufficiently developed to generate a rule of
law that is plausibly followed although there is only one country in
the world, Iran, where buying a kidney is legal and incidentally
it's illegal to engage in international organ trafficking in Iran.
What is conspicuous about countries in which organ trafficking takes
place regularly both within borders and between borders is that that
law is not enforced. It's the joke and the practitioners will tell
you that it's a joke and no regulated market in anything could take
place in which the rule of the law is a mockery. So that's my
CHAIRMAN PELLEGRINO: Thank you very much to both speakers.
I thank all of the members of the Council that (microphone turned
off.) And tomorrow will be at 8:30 a.m. Yes, I have my days confused.
Thank you. It's that birthday syndrome.
(Whereupon, at 5:36 p.m, the
above-entitled matter concluded.)