Friday, April 2, 2004
Session 6: Bioethical Issues of Aging II: The Wisdom
of Advance Directives
Council Discussion led by Rebecca Dresser
Guest: William F. May, Ph.D., Senior Consultant
CHAIRMAN KASS: Could we get started, please?
I forgot to mention that I've left at your place this
notice on a new exhibit at the Holocaust Museum called Deadly
Medicine: Creating the Master Race, on the eugenic practices
of Nazi Germany. This exhibit will open in April and will
be around, I think, when we next meet. And an inquiry was
raised whether members might be interested on the day before
the meeting or perhaps at the end of the meeting arranging
for some kind of special visit over there.
You don't have to let us know now, but we'll canvass
people if they would like to see this. I gather this is really
quite impressive. I know someone who works at the museum,
and although this is not an immediate problem for us, this
is in a way one of the events that helped found the whole
modern bioethics concern and I think worthy of our individual
attention, if not as a group.
The personal and existential and quasi-philosophical discussion
of the first session is now to be followed by a sort of more
legal and policy oriented question around the limited issue
of the wisdom of advance directives. And Rebecca has supplied
the background materials which include some really quite wonderful
things of her own. And I've asked her if she would be
willing to lead off the discussion with some prepared remarks
and help frame what we should talk about.
Rebecca, thank you.
PROFESSOR DRESSER: Thanks, Leon.
Well, I really welcome the opportunity to explore these
issues with such a thoughtful and accomplished group. And
I'm really looking forward to hearing your ideas.
I think bioethics so often focuses on the speculative, the
symbolic, the exotic developments that may have little direct
impact on people's lives, but this topic today is very
different. Many, many families face the confusing and difficult
situation of deciding about life-extending interventions for
older relatives unable to make their own treatment choices.
And many who are not now in that situation really worry that
it will happen at some future point, probably many of us.
Besides being a personal and family problem, it's a
big and expanding social problem. There already is a large
and soon to be larger population of people affected by dementia.
And I think we're really far from being ready to cope
So let me give you some observations on the situation with
a focus on treatment choices for dementia patients.
First I want to describe problems with the advance directive
or as it's also known, subjective approach to treatment
decision making, and then where I think some improvements
could be made.
So a bit of background. How did we get to this point where
advance directives became the favored approached in treatment
decision making? Well, in the '60s and '70s as modern
medicine was coming up with all these new technologies, these
ways to sustain human life such as respirators, the perception
was that doctors were using this technology indiscriminately.
That they didn't have good judgment about how to use this
new power. So people were very afraid about being kept on
life support for too long in what they perceived as an undignified
state. So this general legal rule emerged which holds that
in a contemporaneous treatment situation, a competent person
should be able to decide based on her individual values, whether
treatment would be worth it.
So then it seemed to follow naturally that if illness or
injury makes someone unable to decide, the best alternative
would be to decide based on instructions issued while that
person could still think about the choice. So living wills
and then advanced treatment directives developed so that people
could give these kind of instructions.
Now, the philosophical support for advance directives is
generally based on respect for individual autonomy. And this
approach, I think, has also been attractive because it seems
at least to put the decision in the hands of the patient as
opposed to the hands of others, such as the family and the
doctor. And this is seen as desirable because it's too
easy for families and doctors to subordinate the patient's
interests to their own concerns, whether this is conscious
or unconscious. But I think the philosophical and legal support
ignores serious obstacles to putting advance directives into
Studies of advance directives point to many practical problems.
First of all, most people don't make advance directives
despite many years of effort at education and promotion.
And the directives that are made tend to be quite general.
They often fail to offer very clear guidance to clinicians
and families at the bedside. They tend to be things such
as "I don't want extraordinary means if I'm ever
imminently dying" or something to that effect.
Now some advance directive documents are more specific and
they'll ask what would you want in a particular condition,
would you want feeding tubes, respirators, surgeries, all
these different things. But then the concern becomes whether
the person completing this kind of specific advance directive
has an adequate understanding of these specific treatment
decisions that are being made. And I'll come back to
this problem in a second.
Another general problem is that it's not clear that
advance directive accurately and effectively communicate a
person's wishes. So, for example, there is this study
of dialysis patients. These are competent people dependent
on a life-extending treatment. So in this study they asked
people to complete advance directives saying what they would
want if they got advanced Alzheimer's, I believe it was.
And then they went back to the people and said, "Well
how strictly do you want us to follow these?" And it
turned out only one-third of the people wanted their directives
strictly followed. One-third said they wanted their families
and doctors to have some leeway to override the directive
if they thought that would be in their best interests. And
another third said they wanted their families and doctors
to completely ignore the advance directive. So you might
say, "Well why would you make one in the first place?"
I don't know. I guess they were in the study, they had
So in any event, this advance directive did not really explain
the person's actual treatment preferences.
Another study, and this is a little complicated. It involved
older competent people. And they asked these individuals,
"All right, if you became incompetent who would you want
to be your decision maker?" And it was normally a spouse
or a son or daughter. And then they asked these older competent
people to fill out a questionnaire on life-sustaining treatment
preferences of four different illness situations and six different
treatment interventions. And then they went to these chosen
surrogate decision makers, the sons, daughters, and spouses
and said, "All right, fill out this questionnaire based
on what you think your older relative would put on it."
And there were five groups, one control group and four experimental.
To make a long story short, the relatives who were able
to look at an advance directive to try to fill out this questionnaire
on life sustaining treatment preferences did no better than
the control group that was just filling out the questionnaire
based on their familiarity with the older individuals. So
the advance directive did not increase the surrogate's
knowledge of what the older person would want if incompetent.
So not very effective.
The third general problem is that people making directives
often have a poor understanding of what they are deciding,
and so there are many questions here. First of all, if you're
just a healthy person and you're trying to think of all
the different things that could happen to you, it's very
difficult even for physicians to try to predict that. So
it's just factually complex.
And then another problem is do people completing advance
directives imagine what they would want in a future state
of dementia when their needs and preferences and interests
might be quite different from what they are now?
Even in competent persons treatment preferences change.
There have been studies where they go back to older people
every year and say, "Okay, what do you think now?"
And there is variation. However, many of these people do
not know that their preferences have changed. Social psychologists
have found that we think we're much more consistent than
we actually are in our preferences and values. So people
might not change their advance directives even though their
preferences have changed.
There are other problems such as some studies where half
to two-thirds of the advance directives never make it to the
bedside. They're left in the nursing home or they're
at home. And some evidence that advance directives are not
followed at the bedside if the doctors and families don't
think that they're a good idea.
If I haven't persuaded you, there's a forthcoming
article in the Hastings Center Report by a social psychologist,
Carl Schneider, who is a law professor, where they've
gathered all the empirical studies. It's called "Enough:
The Failure of the Living Will." And they say the following:
"Even if one assumes that living wills desirably serve
a strong version of patients' autonomy, living wills do not
and cannot achieve that goal."
So in sum despite its theoretical appeal to many people,
individual autonomy over future end-of-life treatment as an
incompetent patient may be too complicated to put into practice.
Besides these practical problems, there are moral and policy
problems with the conventional focus on advance directives.
Certain advance directives threaten the welfare of incompetent
patients. In these cases giving priority to the patient's
earlier choice would be detrimental to the patient in her
current state. So the conflict situations fall into two categories.
In one, the directive refuses a treatment that would effectively
relieve an incompetent patient's pain or discomfort or
would allow the patient to continue a life that appears to
have value to her. In the other one, a situation that's
less thought about, but people you know in advance directives
can say, "I want everything." So someone says,
"I want such-and-such treatment." Later on it appears
that giving the treatment would be extremely burdensome to
the patient in her current state and it would not confer a
countervailing benefit in the form of an extended life that
would appear to have value to her.
So in both of these cases the question is which should take
priority; the advance directive or the observers at the bedside's
idea of what seems to be in the patient's best interests?
Now, many would say that this prior "autonomous"
should prevail. But based on the empirical data I've described
a little bit, we could say, well, are the advance directive
instructions the informed considered choice we would want
in such an important situation? And then, how should we balance
the moral significance of this earlier, less than ideal choice
by the individual against what seems to observers to be the
patient's current welfare?
And then at a policy level this balancing has to take into
account the moral duty to protect vulnerable and competent
persons, and this is reflected in the parens patriae role
of the courts and the anti-discrimination provisions of our
So besides this moral and policy problem of threatening
harm to individual patients, advance directives have had a
second negative effect on patient care. And this is inadvertent,
but because scholars in bioethics and law and officials, legislatures,
and so forth, focus on advance directives as the way to resolve
future treatment dilemmas; that is for about 15 years the
notion has been we just have to get everyone to make an advance
directive and then we'll be set. But people don't
make directives. They're vague and so forth. So actually
the majority of treatment dilemmas don't involve an advance
directive. But scholars and the legal system haven't
done all that much to delineate what is acceptable care for
patients when you don't have an advance directive. The
standards that should govern care of patients without clear
directives remain relatively undeveloped, so there's not
much guidance. And as a result, incompetent patients are
exposed to ethically questionable decisions on either side;
both to give treatment and to withhold treatment.
So I think when we anticipate our possible futures as incompetent
patients we should accept that we cannot exercise firm control
over our later medical care. That for the most part we're
going to be dependent on others to protect us from harm and
indignities. But I don't think that accepting this means
that we're helpless to prevent what we're worried
about, that is undignified and burdensome care and burdens
on our family and so forth.
I think that many of the fears that motivate people to make
advance directives could be more effectively addressed by
changing the policy and clinical context in which incompetent
patients receive care. And there are two dimensions to this.
One, there have to be at the policy level efforts to clarify
the scope of permissible decisions by relatives and others
at the bedside. So the way I think about it is there is a
circle of permissible decisions for incompetent patients and
then what's beyond the pale? Either over treatment or
under treatment. And there hasn't been very much work
done on that, and I think we might be able to advance the
ball in that area.
This whole idea of what is in the patient's contemporaneous
interest, this is an essential element of many actual treatment
cases, but it's been inadequately explored. What is inhumane
treatment? What is pointless treatment? Those are the important
questions, I think.
The other dimension of this involves improving the background
conditions. So securing improvements in clinical care for
chronically and terminally ill patients in general. And this
has gotten a lot more attention in the last decade, so there's
been a big advocacy campaign and medical organizations have
been working on improving the care for dying people just in
general, whether they have an advance directive or not. And
among the goals are to furnish all incompetent patients with
treatment to promote their experiential well being and to
allow treatment to be foregone when this appears to families
and clinicians to be a reasonable option for the individual
patient. And here humane and dignified care is regarded as
something the community should provide, a mission for the
community rather than a matter for individuals to take care
of through making an advance directive. And this seems to
me a more sensible and defensible way to plan for our possible
futures as incompetent patients.
So, that's all I have to say right now.
CHAIRMAN KASS: Well, thank you very much, Rebecca.
Just a point of clarification on one of the first of the
suggestions at the end about clarifying the scope of decision-making.
Could you say just a couple of sentences? I'm not sure
I followed that.
PROFESSOR DRESSER: Okay. So the actual situation
at the bedside now and probably in the future, I don't
think we're going to see a huge increase in advance directives
that are very specific. The question is what should we do?
When would a decision not to treat be acceptable for this
patient, we wouldn't be harming the patient by forgoing
a feeding tube or some other kind of treatment? And when
does it seem beyond the pale and impermissible?
So take that case of Margo that I wrote about in one of
the articles and Dworkin wrote about, too.
So here's this woman with pretty advanced Alzheimer's
but she's still able to engage in low level activities
and seems to be enjoying life. She gets pneumonia, antibiotics.
Let's just say oral antibiotics to start with would be
probably effective. If a family says well don't give
it to her, we don't think it's in her best interest
or we don't think she would want it based on some vague
idea of the person she once was but kind of an—there's
no advance directive, so it's just here's what we
think. She wouldn't want to live in this degrading state.
Is that something that should be permissible or is that something
that law and policy should say no, families don't have
that much discretion? There has to be a better case for this
treatment being burdensome.
So say a person like Margo gets cancer and needs chemotherapy?
Well, in that case chemotherapy has side effects, isn't
effective in many cases. You know, may extend life for a
year or something; 50 percent chance of extending life for
a year. When somebody is as old as she is, 80 percent of
people get some sort of burdensome side effects. Now that's
a harder case. Is it better for her to get—I would say
it's probably not in her interest to get that kind of
a burdensome treatment.
So it's exploring those kinds of choices. And they're
always going to be somewhat fact specific. But I do think
that some general guidelines could be given that don't
CHAIRMAN KASS: Thank you.
So these were substantive and not just procedural suggestions
that you thought we should offer.
Let me call on Alfonso, but let me give—invite I suppose
is the right word, our one practicing clinician here to at
least think about a response from the bedside to this situation
and whether the problem is as stated and whether some of these
suggestions make sense.
But Alfonso is first in the queue.
DR. GÓMEZ-LOBO: This is a very simple and
elementary question, I think. The way you present things,
Rebecca, does this really mean abandoning the primacy of autonomy
for a very reasonable set of circumstances and going back
to sort of the old Hippocratic principle of doing everything
for the patient's good? Is that the shift I'm seeing
PROFESSOR DRESSER: Well the Hippocratic Oath says,
"Do no harm." And I don't think that that means
doing everything for the patient, because I think that can
DR. GÓMEZ-LOBO: I'm sorry.
I didn't mean do everything. But that the main focus
of the physician is the patient's good. Now if you go
against the good, it's harm.
PROFESSOR DRESSER: Right. Right.
DR. GÓMEZ-LOBO: But away from autonomy.
PROFESSOR DRESSER: Well, I guess not completely.
I think advance directives can be useful. In fact, I have
an advance directive, a pretty specific one because I think
it's a prudential thing to do. It gives your family members
more authority in the hospital; that is if you can wave this
piece of paper, the doctors are more likely to pay attention
to you. But I have a lot of question marks in my advance directive,
I'm not sure what I would want in various situations.
So I don't think future-oriented autonomy is going to
solve most of the bedside dilemmas. I think some situations,
the vegetative state is something we probably would want to
talk about. Because Alzheimer's — the very end
stage of Alzheimer's is the vegetative state. But, see,
in that case I would say the patient does not have sufficient
interest that the treatment would have to continue, but I
know people at this table would differ with me on that. But
it is going back to looking at what are the interests of the
individual in this current state because future-oriented autonomy
or "precedent autonomy" as Dworkin calls it, it
doesn't seem to be workable or practical even if you think
it ought to govern.
DR. FOSTER: Well, I really don't have much to
say. In the state of Texas, for example, it is state law
that a directive has to be obtained every time if the patient
comes into the hospital. It's not optional. One has to
do it. So, you know, discussion about it is irrelevant in
terms of that.
The problems that you've spoken about are very real
problems. Families decide at the end they don't want
to, you know, either way as you've pointed out.
Another thing very complicating for physicians is that even
though there is an advance directive, the fear of malpractice
suits about withholding treatment is such that patients in
nursing homes almost inevitably, no matter that they're
comatose and have no ability to compare are sent to the hospital.
And they're always admitted to the hospital and they end
up being treated for the things. I mean, we every single
day in Parkland Memorial Hospital we have people sent back
in who have advance directives that are clear in their intent
and are not paid attention to by the nursing homes because
nursing homes have been sued by families that have changed
their mind about doing that.
And even the hospital itself, sometimes because of beliefs
of the staff that override what the family wants. I'll
give you just one example. A patient who had a fungating
breast cancer through the wall of her chest. It was a massive
thing. Couldn't even bring it down to remove the mass.
And the family wished to follow the advance directive. And
a nurse on this floor who believed that this was wrong to
have any withholding of treatment, it was a form in her view
of—I don't want to use the term murder, but that's
what she thought. She, on her own over the weekend, when
I, as the attending physician, was out of the hospital, consulted
the hospital lawyer and said that she would do things. So
I came back in the next day and the feeding tube was back
in this person and was sent out, you know, to die a little
bit later because of a legal requirement in the hospital.
So it's a complicated thing.
I feel much better if I have an advance directive from a
person. You know, my own view is if a person does that when
in their own mind, it is correct. I mean, I have one, too.
And I would think that that would be more important than now
that the patient's 85 years old and dementia has taken
the place so there is no thought and now somebody says well
she would want to stay in this state. Well, I mean in one
sense that is violent assault on her autonomy because she
has said what she wants and now—I mean, they can you know
it's assumed autonomy because she's not present.
I mean, I know you could do that. But it seems to me that
that's a terrible thing to do.
I would be if I had any way, if my kids did that to me,
then I would probably try to send a little scary lightening
bolt not to hit them, but to give them a little scare.
I mean, I think it's a moral issue not to follow what
the patient says when they were mentally component.
Again, I think the things that you have talked about are
very real, but we don't have options about that in Texas.
Whether they're followed, but we have to have it done.
CHAIRMAN KASS: Could I ask you as a factual matter,
are these advance directive about end-of-life care when people
have terminal illness? Because I think one of the things
that Rebecca's papers have shown us is that while lots
of people have been doing things for end-of-life treatment
when people have terminal illness, the large population of
people who are demented who are not yet with terminal illness—
DR. FOSTER: Most of these apply to sort of end stage
CHAIRMAN KASS: End stage things?
DR. FOSTER: Although they're written in such
a way that treatment that is not expected to be of benefit
and so forth can be withheld. Most of it is end of life.
That's where the do not resuscitate orders come in.
CHAIRMAN KASS: Bill May.
DR. MAY: I may be incorrect, but I've heard
from some people that durable power of attorney may be actually
more helpful. How about advance directives plus durable power
of attorney to make more sure that institutions will not be
DR. FOSTER: Well, I think that's absolutely
right. I mean, most lawyers if you're getting your will
done and so forth, you have a durable power of attorney coupled
with—and that makes it much better to do that, yes. But
the problem is that poor people can't get that. I mean,
it's hard for them to get it in terms of getting legal
help and so forth. And if you take care of the poor, which
we do to a large extent in Parkland Hospital, they don't
have the advantage of advice about things of that sort.
CHAIRMAN KASS: Frank.
PROFESSOR FUKUYAMA: Well, I actually found Rebecca's,
the readings that were in the book quite helpful in thinking
about this. Because I guess my view of this had always been
the cases where the patient was vegetative or simply had no
will or autonomy whatsoever, which in a way is the easy case.
But the Margo case that you cited from Dworkin was actually
the much more challenging one where the choice is actually—so that autonomy is not something that's in a binary
state; it's either on or off, there are actual different
degrees of autonomy.
And so in the Margo case she had a reduced degree of autonomy
that might be compared to that of a child. And what Dworkin
was arguing in effect was that the will of the younger Margo
ought to supersede the will of the older Margo even though
the older Margo, even though probably would actually want
to be kept alive and have the antibiotics and so forth. And
so it really does seem to get back to this discussion which
I'm sorry I missed the bulk of in the earlier session
about where is the personhood there. I mean, do we have a
grounds for saying that the real person was the one with the
more fully formed adult will or if you have a reduced degree
of autonomy, you know are you somehow not a person and therefore
should one will bind the other. And that seems to be the
kind of interesting—the most more interesting case.
And actually after you walk through that case, it just seemed
to me that it really was not obvious at all, you know, which
autonomy we should respect.
DR. FOSTER: Let me just say one other thing very
quickly, and I don't want to sound self-serving about
a profession and so forth, but the courts have clearly held
that families and patients cannot require a physician to do
or not to do any things. These are advice. I mean, we're
not obligated for an 85 year old person to do chemotherapy.
The courts have made that clear.
There is a second issue of judgment that the physician may
have. The late Franz Ingelfinger, who was the long time editor
of the New England Journal of Medicine, himself a gastroenterologist
who worked on the esophagus developed esophageal cancer.
And he wrote an article in the New England Journal of Medicine
called "Arrogance." This was a time of the peak
of autonomy for patients. Women would be squatting over mirrors
to try to see if they could do their own pelvic examinations
and see if they could just see—because they had the autonomy
for their own health.
Because he was probably the most famous physician in the
world, the editor of the New England Journal of Medicine
usually is in terms of name, he received advice from all over
the world telling him radiation first, surgery this, that
and the other. And finally someone told him, he says "Franz,
what you need is a doctor." And so he chose an internist
and said, "I put myself in your care." And afterwards
he said it was like a huge burden off of his life. He got
back to editing the New England Journal of Medicine.
And, by the way, his two children were doctors and so forth
and so on. And he wanted somebody who was competent who cared
for him to make the decisions should we do this or should
we not do that.
Now, one could say that's a very arrogant position to
say that maybe the physician would be the best person to make
a choice as to whether this was good or helpful or not. And
I'm not defending that at all. But I think that most
physicians—I don't have statistics. But I think that
many physicians will always want to do what they would do
for their own family. That's a question that's asked
us all the time; if this was your wife or this was your mother,
what would you do. And when one answers under those circumstances,
almost always in my experience the family will go with the
judgment of the physician which is there. Because you try
to explain what the downsides are, what the upsides are, what
a treatment that might add two months, you know, but makes
one sick is usually not—there might be circumstances where
you would do that if somebody didn't have time to make
a will or something. I mean, I've done that. Do a treatment
that might be give me two or three months because of some
critical issue in the family.
So I do think that there's been an arrogance about doctors
who think they're gods, you know. But on the other hand,
we probably do have a better sense of what should be done
than the family does.
When my own father died of lung cancer—he wasn't
a smoker, he just had an endocarcinoma — he had not
wanted anything. He just had an IV glucose, just a glucose
to keep open so they could give, you know, if he needed anything
to do. And his granddaughter came in there and began screaming
that when that was taken out of the arm. It was just giving
fluids. She began to scream, "They're killing grandpa."
It was not killing grandpa, I mean it was just glucose and
water going in there. He had no need for it. And we just
took it out.
So, anyway, I think that there is sense where the physician
should have, you know, at least advice in these things and
maybe more than that. I don't know.
CHAIRMAN KASS: Rebecca, you want to—
PROFESSOR DRESSER: A couple of points.
One, I agree with you that having a supportive physician
can be the key to these cases. However, different physicians
have different values. So some physicians, for example our
former Surgeon General Everett Koop, there's a famous
book called The Long Dying of Baby Andrew about a premature
infant and one of their physicians was Dr. Koop. And at least
at that point in his life you had to do everything. And so
if the individual physician has these certain values and you're
a family with that physician, that's what will be proposed/imposed.
And maybe you're with a physician whose—well, what's
it worth to have a life with dementia? Not very much. So
let's not do anything.
So it's so ad hoc, that's the problem with that
The other, I don't know this Texas law specifically.
There is a federal law, the Patient Self-Determination Act
that says every patient going into a hospital, a nursing home,
an HMO is supposed to be asked whether they have an advance
directive and told their rights under state law to make one.
And this has been in effect since the early '90s. And
this was supposed to be the thing that would really push us
over the edge, you know, getting people to do these things
more frequently. And they haven't.
And part of that statute says no one should be forced to
make an advance directive. I'd be kind of surprised if
Texas forces you.
DR. FOSTER: Yes, I may be quoting it wrong at being
forced. It may be more close to what you—but the Texas law
is separate from the federal law.
PROFESSOR DRESSER: Right. Yes.
The other thing about the—I agree part of the problem
is defensive medicine and the legal—the conservative attitude
of hospital physicians and nursing home administrators. And
that might be something we could talk about. That they're
too worried about lawsuits. In fact, the expert on this,
Alan Meisel who has a treatise called "The Right to Die,"
he says there have been more lawsuits by families for over
treatment when treatment was given that either the patient
didn't want or the family didn't want and they were
so angry they went to court to sue for that. Then this whole
problem of families suing for under treatment. So I understand
that's a big perception among doctors, but I'm not
sure how much of it is actually true.
CHAIRMAN KASS: Gil and then Jim Wilson.
PROFESSOR MEILAENDER: I'd like to come back
to a version of the question Alfonso asked, Rebecca and just
sort of get you to think a little more about it.
I would have said from your comments here and certainly
from the reading as well, that you were tilting in the direction
of favoring what we might call an objective best interest
standard as opposed to a more subjective patient autonomy
standard. But then with your answer to Alfonso I wasn't
sure how far you wanted to push that. It turned out that you
got a very specific advance directive of your own and you
seemed to kind of back off a little bit from that.
And so could you clarify? I mean, the way I took your comments
here was really to say, well we've got these laws about
advance directives on the books and they're probably not
going to go away. I mean, you weren't calling for some
sort of full force attack on them or anything. But in fact
they don't get the job done, they don't really accomplish
in many cases what we want. And we'd be better off with
respect to many patients, in particular those cases where
our hands haven't been tied legally by an advance directive
that does exist, we'd be better off turning in the direction
of thinking simply about what is in the best interest of these
patients, trying to lay out at least some boundaries for detailing
that, then we would be thinking simply in terms of their autonomous
choices or putting our efforts to encouraging more of them
to express those choices through advance directives. That's
what I thought was the direction you were heading, but then
I wasn't so sure after your response to Alfonso. And
I wonder if you could just say a little more about just your
own thought on it?
PROFESSOR DRESSER: Sure. My view is that we do
have to focus on the patient's current interests. One
of the reasons I gave you, the two medical journal articles,
was I thought that they did a beautiful job of describing
the reality of these cases. And the struggle that many doctors
have, that's the other problem with just saying, oh well,
good doctors will take care of it. A lot of doctors really
are suffering with trying to figure out what they ought to
So, yes, I think we need to focus on that. But then the
other question is all right, you focus on that in order to
say okay if a family asks for X it's fine, we think that's
permissible. That's within the scope of best interests,
whatever you want to call it, or it's beyond the pale.
If an advance directive asks for nontreatment or treatment,
it's within the scope of acceptable treatment options,
so go with the advance directive.
If the advance directive asks for, I want active euthanasia
if I ever get Alzheimer's disease, you don't follow
that advance directive. It's clearly beyond acceptable
medical practice at this point in our—not even in Oregon
is it acceptable. But there may be other cases where somebody
says, "I don't want anything" in their advanced
directive where we would override it. Or "I want a heart
transplant if I have dementia"; we wouldn't follow
So in order to decide whether to give effect to the advance
directive, you have to pay some attention to the patient's
current interests. In order to decide whether to give effect
to the family's request, you have to pay some attention
to the patient's best interests. So they can work together.
PROFESSOR MEILAENDER: Just a quick follow up. But
if you're prepared to override an advance directive on
the grounds of current best interest, that means you really
do want to give primary weight to the objective best interest
PROFESSOR DRESSER: Right. But I would say that probably
in many cases the advance directive does not conflict with
the patient's current interest, such as I would think
in the vegetative state, but you would not think that, I don't
CHAIRMAN KASS: Jim Wilson?
PROFESSOR WILSON: I want to return to a statement
Dan Foster made about his experiences reinforced by Rebecca's
observation, with which I concur that the thrust of the culture
in which American hospitals and medical practice is now embedded
gives them, on the whole, a rather conservative view. That
is to say conservative in the sense that they want to supply
treatment because the risks of not supplying treatment not
only lead to more lawsuits, which they may win, but run against
the several state and federal court decisions about when treatment
can be withheld.
But now let's imagine this culture changes and let's
put ourselves in The Netherlands where assisted suicide is
legal and where it may increasingly become legal in some parts
of the United States. There the doctor's attitude, it
seems to me, will change, one saying we must do whatever is
necessary to preserve this person to doing whatever is necessary
to end the burdens on the system.
Now, at this point I had hoped to give you the exact social
science citation to The Netherlands' experience, and I
cannot remember it because I am in my pre-dementia stage.
But if you press me hard, I will get the citation and I think
it will show that altering the legal and cultural system alters
the behavior of doctors.
CHAIRMAN KASS: Peter and then Janet.
DR. LAWLER: Imagine there were a law requiring everyone
to have an advance directive and we all had to do it on the
same day. We would probably want to maximize our autonomy.
We would probably say rather than be incapacitated, I'd
rather die. Rather than be a burden on my family, I'd
rather die. And you can imagine the guys sitting around the
bar kind of competing over who has the most manly advance
directive. But this is a natural thing because human beings
really want to be willful in that way; they really want to
have control over their lives. They really wish they wouldn't
die and get incapacitated.
On the other hand, actually put in the situation that Dan
described, his answer is exactly right; I would want to have
a competent person who cares for me making the decisions.
Because at that point I'm not fit to be autonomous. How
could I be autonomous? I would rather have that burden lifted
from me, although it would seem in the nonsexist sense, unmanly
to sign something like that. Although now that I've heard
all of you speak, that's what I would do. If the law
required me to have an advance directive I would say I want
a competent person to care for me according to my objective
best interest. And it's hard for me to specify what that
might be. In any case, I'm not going to be in a position
to know at that point, so that's what I would do.
That doesn't answer that many questions, because it's
unclear for reasons that have been given how much my doctor
would really care for me. He might be more worried about legal
questions or whatever, although in principle I'd rather
have a philosopher-king doctor who loves me more than any
other human being at that point.
I may not be able to write all this down in my advanced
directive, right? But I think all this does point to the
objective best interest.
In the case Rebecca laid out of the woman who is child-like
and happy, I don't think it's a close call. I mean,
she gets the treatment because I think that is in her objective
best interest. You wouldn't withhold treatment from your
dog in that situation, your dog being child like and happy
and have some kind of problem that could be resolved.
So I think somehow I'm not against advance directives
in every circumstance. It's natural for people to want
to do something like that. I just don't think that for
reasons you gave, it would work out that often. And so legally
we really shouldn't allow them that much.
CHAIRMAN KASS: Excuse me, Janet, please?
DR. ROWLEY: Well, I have multiple different concerns
about the discussion, and I'm probably the closest to
having these problems come as realities. But I would like
to say that I think it is appalling that advance directives
that an individual who is thoughtful and considers what their
life is and looks to the future very uncertain of what their
life will become, that their advance directives when they
are thoughtful, intelligent individuals should be the prime
governance of how that person is treated in the future.
And I think that to override that by saying well the person
is still alive and happy, not the way the person was, but
not unhappy and that less competent state is going to persuade
us that we ignore the person's advance directive, I think
that's absolutely dreadful. And I think that we have
to come back to reality, which often doesn't have much
place in our discussions.
We heard yesterday about the needs for children and the
need for better, richer environments for many of our children
for them to be able to function at a level that they could.
We are a society with limited, restricted resources. Not
unlimited resources. And we're going to have to make
choices. And I think for the state to say that some person
in a vegetative state, that the state, the government has
an interest in seeing that that person is kept alive at thousands
of dollars a day, whereas we won't spend that kind of
money for helping children who are our future, is the most
unethical thing that I've heard of.
CHAIRMAN KASS: Rebecca, please.
PROFESSOR DRESSER: I totally agree with- well, I
have a lot of agreement with the last part of your statement.
So with Margo, the case, would you follow her directive not
to have the antibiotics? And then also, what about someone
whose advance directive says, "I want the doctors to
do everything they can as long as my body can keep on going.
It's God's decision. So give me everything."
Would you give equal respect to that, quote, autonomous choice?
DR. ROWLEY: Well, I guess I hadn't really realized
that many people in their advance directive do choose everything.
So, that's a more difficult question. And you're
right, if you are going to say one is absolutely supreme,
then you can't distinguish between those. And I haven't
thought about it enough to give you an answer in that.
I think in the case of Margo that I would withhold treatment
because I think one has to consider not only the individual,
but the family. And I was actually going to ask Leon about
his mother. If his mother had had a choice, would she want
to be the way she was for that period? Because, I mean, I
want my children to remember me as I am now. I don't want
them to remember as I may be in the future, substantially
less than I am now.
It's a question of controlling one's future. And
I think that as I watch my friends—this fortunately was
not my case, and my parents or my husband's case with
his parents, but I watch friends just agonize over the very
slow, painful demise of parents and the feelings of despair
that it engenders in the children to have to watch this and
to be, in a sense, subjected to this painful situation. I
would not want that for my children.
And so I think that under some of these circumstances, we
have to deal with our mortality. And we have to try to think
not only what our responsibility is to ourselves and our family,
but to society.
I think that we have gone overboard of trying to be concerned
about older individuals. They have political power. They
vote. Children have no power, no vote and yet they're
our future. If you ask a grandparent are you going to take
away from your grandchildren's resources to fully develop
because they don't have the educational opportunities,
no grandparent is going to say save me and spend thousands
and thousands on me and deprive my grandchildren. But that's
not the way society frames these issues. And yet I think
they're a critical way that the issues should be framed
because we live in a real world.
CHAIRMAN KASS: As it happens, I'm next in the
[At this point, Dr. Kass requested that transcription cease
while he related a story of a personal nature. The transcript
resumes about two minutes later, following the story.]
CHAIRMAN KASS: It does seem to me that when the
advance directive are being used as a substitute for the medical
judgment of the doctor at the bedside, then it seems to me
we substitute legalism and a kind of rigidity for the obligation
of prudence and for the obligation of care for people on the
spot. But it does seem to me also that as Dan Foster said,
the existence of the advance directive can't prescribe
for the details, but tells you something about the disposition
of the person. It's a rough guidance. And I think people
would be helped if we don't treat them as absolutely binding
documents because you have to leave a lot to the circumstances.
But it does tell you something about which way the patient
leans and at least with some specificity of what needs to
be done and what should be allowed to be done.
I don't think, however — I think most people don't
have their own doctors, so this sense that you're going
to be in the hands of somebody who knows you a long time who
can make this decision in the light of a long experience.
You know, it's the privileged people who have that, and
even fewer and fewer of those. And many, many of the hospitals
now simply turn these things over to ethics committees who
are now making these decisions as best they can. They're
hard decisions, but they don't make them with full knowledge,
concrete knowledge of the patients that they're dealing
So what to do here? I'm not unfriendly to trying to
develop certain kinds of guidelines, rough guidelines of the
kinds of considerations that ought to enter into whether treatment
is too much or when you might say, look, we don't know
what the patient really wants because the patient can't
tell us, so we have to somehow imagine the patient's best
interest and not simply project our own, by the way, which
is always a problem.
This is now a question for you, Rebecca. Do you think that
one could in general terms, given the tremendous variability
of what actually presents itself in clinical situations, do
you really think that a committee like this or a government
body could sort of say in certain kinds of objective terms
the Schiavo case goes this way, Margo case goes that way and
articulate the objective criteria? Now, I would like there
to be some kind of objective criteria, but I can't imagine
except perhaps with the same kind of efficacy that the advance
directive provides a kind of disposition or an orientation,
but I can't imagine that we could prescribe anything that
any person on the spot would feel somehow bound by.
PROFESSOR DRESSER: Well, I agree it's very daunting
and difficult, and that's one reason everyone just wishes
advance directives would solve the problem. But they're
not going to solve the problem. And so what to do then?
Well, courts actually have outlined some objective standards.
There's one called the "inhumane treatment"
standard, which is a New Jersey Supreme Court decision. If
there's no advance directive, life-sustaining treatment
is not required if the burdens of treatment would be so severe
and the benefits so small that imposing the treatment would
And so then you can talk about—and I have lots of legal
cases which are somewhat rich in facts that are good examples.
Where would most of us agree? This seems to be too much
inhumane. Where might we have different perceptions? And
it presents this interesting problem of other minds, that
is how can you ascertain what is going on in the mind of someone
with dementia? But this is done all the time in the clinical
setting. I mean, this very sort of informal judgment about
well, let's try to do what's best for the patient.
I've been involved in lots of ethics committee meetings
about patients like this. And we talk about the facts.
But an inhumane treatment. Other people have called it
an anti-cruelty standard. And then, you know, try to flush
it out; what does that really mean? What is within the scope
of acceptable decisions that one could justify with that kind
of a standard?
The more controversial one is "pointless treatment."
Now many people, and in surveys 80 some percent of people
in the U.S. say they would want their families to be allowed
to choose against a feeding tube or any other kind of treatment
if they were in a vegetative state. So many people in this
country would see that as pointless, not everyone. So we
might say that's where you might flip the presumption
and say if you want continued treatment in a vegetative state,
you have to make an advance directive asking for it.
But then how far away from vegetative permanent unconsciousness
would you go? Barely conscious, which is a sort of a second
to the end stage of Alzheimer's. And we have some legal
cases about that. And then, you know, up the scale.
When does treatment become pointless? Of course, the danger
is the slippery slope. Once you say on a conscious patient
who the treatment would not be extremely burdensome, but you
don't have to give the treatment because it's not
conferring enough of a benefit on the patient to continue
life, then you open up the door are we going to apply this
to people with mild dementia, people like Margo. You know,
where would you draw the line? And so that's another
When families or advanced directives say, "I don't
want treatment in that state," is that something that's
normatively acceptable? I think that you can say some things.
You can't, obviously, have a recipe.
CHAIRMAN KASS: Gil and Jim Wilson and we'll
take a few more. We've only got one request for public
comment, so we should be through by noon in any case.
PROFESSOR MEILAENDER: Well, I just wanted to make
a short comment. I mean, I think actually there's a lot
more we could say. It's very complicated. But one shouldn't
think—at least I wouldn't have thought that the kinds
of guidance that Rebecca has in mind would, as it were, solve
cases. See, I mean your move was to the infinite complexity
and difference between all sorts of cases. Guidelines like
that or moral norms even can't substitute for practical
wisdom. You still have to decide what the circumstances of
the case are and how they relate. But it's still true
that one could—for instance, I would say we should always
act in such a way that we attempt to benefit the life the
patient has, not ask whether the life is a benefit.
And that's arguable, of course. I understand that.
But there's an example. Now, that doesn't tell you
in any of the cases you had in mind what practical wisdom
would decide was benefiting the life the patient has. But
still, it's a relatively objective standard that tells
you kind of what you're supposed to think about and helps
you to understand that if I find myself beginning to think
just whether it's a benefit to have this life at all,
something's gone awry.
CHAIRMAN KASS: Jim?
PROFESSOR WILSON: I missed part of the conversation,
so I may be furrowing ground that should best be left unfurrowed.
But I do want to argue for the continuing effort to develop
some kind of legal standard. Not because I'm one of those
people who think a legal standard can settle such matters.
I do not at all think that. I am very impressed by statements
that have been made here this morning about how complex, how
difficult, how subtle and how subject to change the feelings
may be of persons who are in some kind of medical care. But
I worry about anything that we or others say that leaves it
at a standard to be judged by the people involved or by their
doctors, or by some combination of their doctors and their
people. Because although some may use the fine standards that
Gil has suggested, others may be preoccupied with ending pain
or ending discomfort or ending cost.
Requiring an advance directive, perhaps one substantially
superior than has now been prepared for people, the sort I
have signed, it seemed to me, constitute a rebuttal presumption,
and that this rebuttal presumption would be a general guidance
that would set kind of the outer limits. But then in interpreting
that rebuttal presumption, we would expect and the courts
would require that we have, insofar as we can, a careful conference
with the patient, if the patient is still conscious. Obviously,
the patient may not be. With the physicians and with family
members. And that we would set up differing legal standards
as Rebecca's essay in the Hastings Journal makes
clear that if the patient is conscious, though has no prospect
for improvement, the standard would be clear and convincing
evidence. If the person is unconscious and in a vegetative
state, the evidence would have to pass a standard of preponderance.
And there might even be cases where you would have to have
a settlement beyond a reasonable doubt, to which would be
the highest possible standard.
But requiring an advance directive as a condition for admission
to a hospital would set up a loose standard within which a
guided dialogue would take place that the courts would oversee.
And I say this not simply because I think it's a short
circuit to solving the problem. I don't think it's
a short circuit at all. I think it simply reinforces the
enormous complexity of the problem. But it does get the law
involved on the side of the right of the living person. And
I very much worry that as I look around the world, the law
in many countries is slipping away from preserving the life
of a person, and I don't want that to happen here.
CHAIRMAN KASS: Thank you.
Bill May and then Frank.
DR. MAY: Earlier I talked about a durable power
of attorney of strengthening advance directives. Now ideally
Dan had said it would be better to be able to make a choice
of a doctor you really trust to make the decision. But if
you go the route of advance directives and durable power of
attorney, there's one further issue that too often, this
is taken to be an instruction simply to the healthcare institution.
And it seems to me in the setting of the family, especially
as we think through the importance of prudence in reaching
specific decisions, that it shouldn't be understood to
be a private transmittal of instructions to the nursing home
or to the hospital or to the physician. It should be ideally
an occasion for discussion within the setting of the family.
Because you do have temporary caregivers, that is doctors
and nurses, but you have those people more permanently involved
with that individual, for whom this is an event that they
still live with, as all of us around the table surely do.
There's not simply the original decision, what you do,
but the decision also to live with that decision. And what
one might make at seven years along the line, may not yet
have been an appropriate moment for living with that decision.
And this, it seems to me, would be helped somewhat if we didn't
think of this as simply a legal instrument to deal with obvious
excessive zealous care on the part of the hospital, but an
occasion not only for that individual, but other family members
to come to terms with their own mortality. Because surely
in burying a child or burying a parent, derivatively there,
you have to come to terms with your own end.
CHAIRMAN KASS: Frank?
PROFESSOR FUKUYAMA: Well, I think that Janet actually
raised a—you can go, Janet. I'm going to say only complimentary
things. I do think you raised actually a real important issue.
Because we've been discussing this entirely in terms of
the moral considerations of an individual's or an individual
family's decision but there are these big externalities
to all of this. Because there's a social cost associated
with some of these decisions.
Now, actually, it seems to me that societies have made some
of these decisions for individuals by, for example, rationing
health care at later stages of life. This now tends to happen
primarily in Europe where you have national health plans and
you simply cannot get treatment past a certain age. You can't
get dialysis or you can't get a transplant or something
like this as a means—and I think we all recognize the fact
that there is a real disproportion between the amount of money
we spend for this last 6 months' care in people's
lives versus the way we allocate resources to other kinds
of pressing health problems. I would say two things about
this. One is that the political reality is that that kind
of rationing is being eroded everywhere that it exists so
that in Holland, for example, you know there are fairly strict
rules on who can get health care. But I think the direction
of the politics is pushing to offer more care to people later
in life. And so the political reality really goes very much
in the other direction.
On the other hand, and I think this might be an interesting
thing perhaps for the staff to look into, there's this
huge demographic crisis that is overhanging the western world.
By some estimates, I mean Nick Eberstadt has this estimate
that in 50 years the median age in Italy is going to be 60
years old. And the externalities are going to be so crushing
under some scenarios that are going to materialize in a generation
or two that it does seem to me that societies are going to
have to really be forced to take a kind of hard look at some
of these externalities. And I think it would be useful to
frame this discussion of the individual morality of these
decisions in the context of a broader economic analysis of
CHAIRMAN KASS: Thank you.
Let me declare this discussion at an end, even if there
are additional things that people want to say. In a moment
I'll ask for the one person who wants to make a public
Just a very quick sense of the house. My sense is that
we have a topic here. Not yet carefully defined about how
to proceed with it, but this is personally serious, socially
serious, only going to get more so if the demographics are
right and not yet obvious what our contribution to this matter
should be, but there's certainly enough for us to try
to develop some staff work and bring this to the next stage.
Have I read the reactions around the room? All right.
With Bill May's help and the staff's help between
now and the next time, we will move this project forward,
and we have some work to do on the other matter that we talked
about yesterday to see whether and how we can formulate that
to make it a more tractable matter for the Council.