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Thursday, December 2, 2004

Session 3: Aging and Care-Giving: Are there Objective Standards for Decision-Making in Caring for Patients with Dementia?

Council Discussion based on papers by Rebecca Dresser

CHAIRMAN KASS:  Can we get started? 

Okay.  This session, the last of our three sessions on issues connected with the aging society, is on the subject of aging and caregiving.  And the question is the question we started to discuss this morning as to whether there are objective standards for decisionmaking in caring for patients with dementia.

You'll recall that this was the major subject of discussion prompted by Eric Cohen's paper at the June meeting, and Rebecca has gone home and prepared a short working paper that's in your book — issues — it was kind of a summary of the issues for us to consider as we move forward in this discussion.

Let's assume for the sake of this discussion that we are beyond advanced directives, that we are beyond substituted judgment, and that we are talking about a situation where surrogate caregivers, whether court-appointed or in the better cases family members, and let's make the best case working in close consultation with physicians and nurses and all relevant parties.

Let's assume that we have arranged a procedure to optimize the consideration of the best interests of the patient.  Let's make that the starting assumption, that we've got the best procedure in place.

The question then is:  how do we want to think about the substantive issues of the judgment themselves, and, in particular, an issue that we raised last time — to what extent, and under what circumstances, should diminished capacity itself be part of the things that weigh into the process of making decisions? 

Should one simply content oneself with the fact that surrogate caregivers assumingly — assuming that they are the right ones and that we have the right settings, should have discretion to judge what is in the best interests here and now for those who are incapacitated? 

Or is it necessary to think in the abstract — and we heard Carl Schneider's answer to this question this morning — does it make any sense, not so much as a matter of law but simply thinking through the ethics of this, to try to think through in advance whether there are boundaries or standards to limit this discretion of the surrogate decisionmakers and caregivers that would protect the vulnerable against overtreatment, undertreatment, and active killing?

Should the people be free to decide whatever it is that they wish, or should there be any kind of boundaries or outlying guidance for those decisions?  Quite apart from the question of whether it makes sense a priori to do this, and I trust that the remarks this morning will meet some reaction from people who have further thoughts along that line.

If you assume that it might make sense to try to do so, one should recognize in advance the danger of trying to set forth such objective considerations, what degree of dementia might be grounds for treating a person differently than someone not similarly incapacitated. 

And one knows that at that moment one is introducing into ordinary discourse and with the blessings of practice, and perhaps even law, certain quality of life considerations that — just to repeat things that we talked about last time, that begin to suggest that some lives are not worth living or not worth sustaining.

On the other hand, as Rebecca suggests, not to do so explicitly, to pretend that we are simply having a procedural solution, is to ignore the fact that, in fact, such substantive choices are being made, and precisely with those kinds of values in mind — admittedly decentralized, admittedly people working it out on their own, and there is no opportunity to try to set certain kinds of limits where discretionary practice might, in fact, violate them.

So I think that's the first sort of dilemma that we face, and I think this Council ought to face the fact that at least one possibility looking forward is that if we do not think this thing through and work out some practice — some standards of practice, whether worked out in the common law manner or by some other means, we might very well find ourselves under circumstances with this increasingly aged and increasingly demented population that the absence of the willingness to grapple with this question through a decade of infirmity will lead to a great deal of increased pressure for assisted suicide, and these quick solutions for failure, actually, to grapple with the delicate decisions that people are making.

Second point by way of introduction, the last time we sort of tried to take this up in the light of the big questions, in terms of the categories of moral decisionmaking, but let me suggest that to see if we can put those intuitions to the test, to try this time not to sort of stay at the high level of abstraction and talk about whether dementia should count or not, but to take up the three sort of short cases that Rebecca has really in the — in the last paragraph — is it the last or the second-last paragraph of her paper on page — the bottom of page 8 and the beginning of page 9, and try to proceed somewhat casuistically through these different cases to see whether people's intuitions are such that, assuming that we had to take these things up cases by case, whether there are the beginning stirrings of what people might want to say by way of standards.

That I think might be an easier way to proceed, so let me read the paragraph aloud and put it on the record.  "An analysis similar to the one used in the discussion about the circumcision case could support classifying certain dementia treatment decisions as outside the limits of acceptable family choice.  One example would be family refusal of oral antibiotics for a patient with mild dementia who retains the ability to enjoy numerous activities and relationships.

"A much closer case is family refusal of major surgery or chemotherapy for a patient with moderate dementia.  In this situation, the patient may be unable to understand or remember the reasons for the restrictions and physical discomfort the interventions would impose.  Some people would see this treatment question as one that the family should be free to resolve; others would disagree, arguing that non-treatment would be too detrimental to the patient.

"A third case is family refusal of tube feeding for 'barely conscious' advanced dementia patients.  Although this option may not be covered by a narrow concept of the patient's best interests, it is often defended as a reasonable choice in light of the questionable benefit that tube feeding confers on such patients."

And Rebecca, in a way, invites us to try out some kind of robust, objective approach to treatment decisions, suggests that developing such an approach requires really public and professional debate over cases like this.  And we could multiply them.  I mean, in fact, one of the troubling things about trying to develop any kind of standards is the number of cases are really quite infinite, and the facts will govern.

But, nevertheless, since this is — this is where the last discussion and this paper have led the conversation, let's try it out and let's — if you're willing to simply follow an agenda where we take one case at a time, let's start with the middle case, and then work to the — either side.

We have a case of a patient — again, these are generalizations and we — probably each of us are filling in the details with mental images in different ways.  We have a case of a patient with moderate dementia unable to understand or remember why it is that what happens as a result of this intervention is happening to them.  And the question is:  might the family, under those circumstances, refuse major surgery or chemotherapy for such a patient?  And, if so, how would you justify it, or why or why not?

Jim, on the merits, or do you want to change the procedure?

PROF. WILSON:  I don't want to change the procedure.  I just want a brief introduction from one of our physicians here.  Would somebody try to explain to me briefly the differences between mild, moderate, and advanced dementia?

DR. FOSTER:  I think that's largely subjective.  I don't — I don't think that there are any defined, you know, rules like a DSM, you know, that you detest so much over there, Paul.  I don't —

DR. McHUGH:  I think there are real differences.

DR. FOSTER:  Well, yes, I think there are real differences.  I mean, they are trying to describe this subjectively.  The first case can enjoy things, and the other one can't remember anything, and the other is very — I mean, so they're just — it's just broad sweeps I think.  I don't know.  Paul may want to comment on —

CHAIRMAN KASS:  We had criteria — remember, was it Geri Hall who was here?  Her presentation?  David Shenke in his book goes through this with — in a kind of narrative and descriptive way.  But there were a list of criteria at least that the profession uses to more or less categorize people knowing that the boundaries are entirely gray.  Is that —

DR. McHUGH:  Well, it's a graded phenomenon.  But if you took a disease like Alzheimer's Disease, there's no question it falls into three stages.  The first stage, in which fundamentally the major problem is simply memory impairment, an inability to form new memories even though old memories and old habits and style and those kinds of things are fully intact, and the person is quite able to enjoy things. 

The second phase that comes after about three, three and a half years into Alzheimer's Disease, is a phase that begins with a gradual loss of language capacities for some and apraxic problems; that is, the ability to kind of dress yourself and do those things, depending upon which hemisphere has the dominant affliction. 

And associated with that is an advancing aphasia, language problem, or an advancing inability to use your arms/hands appropriately, and sometimes with it hallucinatory and delusional experiences, which are very, very distressing for the patient.  But, again, they often can enjoy things and obviously can continue to recognize people.

And then, the third phase is a phase of progressive paralysis, a total absence of essentially capacities of understanding, the development of Kluver-Bucy Syndrome, where people are putting everything into their mouths and fundamentally are bedridden and twisted into a spastic paralysis state.

So, and those three big stages.  And the Mini Mental Status Examination, which we wrote and now is the standard for the following of the decline of cognitive powers, would split it up into having the total Mini Mental score — the perfect one is 30.  In sort of the first stage the patient runs somewhere around down to 20.  In the second stage, they run down to about 12.  In the third stage, they're 11 and below.

CHAIRMAN KASS:  Anything else before we tackle this?  Granted, it's hardly — I mean, it's a barebones case.

DR. GAZZANIGA:  It might be an interesting exercise to before —


DR. GAZZANIGA:  — before those of us who are charged with dealing with these patient situations, to have our two physicians say what, in their experience, is their practice given — to start off with, on each of these cases.  So if you want to take the second case first, and that was your patient, how would that play out at Southwestern?  How would that play out at Hopkins?  How would it play out with an internist?  How would it play out with a psychiatrist?  As a place to start.

CHAIRMAN KASS:  Excellent, if they're willing.  Paul, would you start?

DR. McHUGH:  Yes.  And that's a good — that's a good approach.  By the way, though, I have to have a preamble —

CHAIRMAN KASS:  Professors always do.

DR. McHUGH:  — before I —


CHAIRMAN KASS:  That's your privilege.

DR. McHUGH:  The major problem for most of us, and for most onlookers, is that you don't — that we don't offer to patients with dementia and with Alzheimer's Disease in particular optimum care.  Nursing homes are fundamentally psychiatric hospitals, it turns out, but you can't call them that because if you call them that then they don't get appropriate Medicare services. 

But they are psychiatric hospitals, and they should have all the kinds of things that go into a psychiatric hospital, not only full evaluations but occupational therapy, social work, family work, and the like, and ultimately the implementation of a — the least restrictive environment that a person can live in.

And when Alzheimer patients live in such environments, everybody comes to appreciate how much they are enjoying life, how much they get from life, and things of that sort.  So that even in the categories that I was laying out for you, much would depend upon whether this person was fundamentally being warehoused in some nursing home that just did think of themselves as a repository for the demented, or whether they were living in the appropriate kinds of Alzheimer services that lots of us are trying to build and demonstrate that they are not beyond the powers of a reasonably prosperous country.

So a lot of that will determine a little bit about the way you look at these things.  But, you know, each one of them is progressively more problematic, obviously. 

Now, for me, you know, I do everything, but with — with explanations and work and appreciation with the family.  Oral antibiotics for somebody with mild dementia — I give it all the time, and I explain to people that, of course, I'm going to give this, and I tell my patients who worry a little bit about what I'm going to do, I say, "Don't worry, I'm going to be there with you.  We're going to get you through these various things.  It's not as bad as you think," and all of that.

The second one in which you think that you have a person, say, in the second phase of Alzheimer's Disease where they are prone to delusions and hallucinations, and the like, the issue of, well, would you go in and — let's say, because he as well suffered from Hepatitis C, had developed a hepatoma with metastases, would you go in and take his liver out, give him a liver transplant, replace the invaded inferior vena cava, and the like?  Would you do that to him and expect him to really make it and get through and understand it?  You probably wouldn't.

If, on the other hand, the person had a leukemia or a blood dyscrasia for which a short period of chemotherapy would be successful and might, again, give him a few more years of the life that was — everyone agreed he was enjoying, well, then, you would do that.

When it comes down to the last one, where it says when and where you put a gastric tube in, then you begin to wonder how much you're making this person suffer from the tube and from the fluids that you're going to give them.  And I probably would say at that point I wouldn't do a gastrostomy or put a tube in, but I might try to work with intravenous, recognizing that we're close to surrendering here.

Ultimately, this all comes back to my discussions with — that you've heard me say before, and the like, that I think that when you take on a patient with Alzheimer's Disease or other forms of dementia, you are taking a contract with that patient to fight for him against this enemy, this disease.  You and the patient have decided, we're going to work against this.

And we know that this is ultimately going to be a victorious enemy, but we're going to fight as long as we can.  But we're also going to agree that there's a point where we're going to surrender.  And my concern is that we betray the patient rather than surrender too early.

So being with the patient, having them know who you are, having them work for the best kind of environments that they can get with, and eventually surrendering, is my practice in general, and in these specifics would inform the decisions that I was making.

What do you think?

DR. FOSTER:  Well, I don't think that we're too different from this.  I would use a generalization that — in the first two cases that we — where medical procedures are indicated, that we would carry out the medical procedures regardless of the status of the dementia, taking into consideration — for example, if we took your case of Hepatitis with a hepatocellular carcinoma, well, the survival rate of that is so low that you wouldn't do it. 

It would have to mean that the intervention had some reasonable effect on allowing the patient to continue the sort of life that the patient had.  So that we would not — we would not back off, or really would not honor a family's position, I mean, once they — they came into this.  I guess we have to have permission to operate, if we did it, or chemotherapy.  But, I mean, we would try to argue that.

The third case of feeding is much more optional.  If you are near the end stage there, then that's not really a medical procedure.  That's a nutritional procedure that you're — that one is talking about.  And there one would make a decision in several ways. 

For example, if the patient was not wasted — that is to say, that if the person had adipose tissue on, lots of stored fuel, I mean, and most people in the country these days have lots of stored fuel, they don't need any calories to be fed anything, so it's only a matter of maintaining fluid, which could be done by a tube or not.

Now, but that's not a medical — that's really not a medical problem.  We'd have to go — go back to the other issues along this.  I would say that the — that for people who want to die for — you know, who are of their right mind and they want to die because of terrible diseases, and so forth, that starvation is a very good way to go.

Our former — used to be the former head of the Pharmacology Department at Yale, and was our Graduate School Dean, had ALS.  And towards the end — I wasn't originally his — didn't take care of him, but I took care of him at home, and so forth, and I'll never forget that he — he was perfectly bright, and so forth. 

But I got home from church one Sunday, and his wife called me and he could just barely speak, that she could read his lips, and he said, "Tell Dan Foster I'm going to die," you know, and so he chose the way to die was not to eat, because if you don't eat any calories what happens is that you lose hunger.  I don't want to get too technical, but you get accumulating in the blood what we call ketone bodies, and ketone bodies stop the hunger drive that's present in the hypothalamus there, and so it's a very peaceful way to go.

If you don't give fluids, it's not going to last too long.  If it's just — if you're giving fluids, it's going to last longer, because you then have to use up all of the calories that you've got stored in fat, you know, so that's a long procedure to do that.

So I would think that I would not have concern if the — and my judgment concurred with the family's judgment that this was not a meaningful life, that this would be a peaceful way to go, in contrast to, you know, shooting somebody with, you know, potassium or something like that that we're talking about.

So I think we'd be in agreement.  I would — we would treat both things, and it becomes even stronger if the mental retardation is at a young age, you know, where you don't — let's say you've got a Down's Syndrome that you have — have this.  Well, you know, that would just be unthinkable to not give therapy there; it's different.

So I don't know whether that's clear, what I'm saying.  I think it —

DR. McHUGH:  But I —

DR. FOSTER:  I think Paul and I are pretty much agreeable to most of these —

DR. McHUGH:  But I think what you've seen in action here is a kind of conversation that would take place between a good internist and perhaps a good neuropsychiatrist caring for the people.  We would talk back and forth exactly in this way, understanding what we're trying to do, weighing — because we would be on the patient's side and thinking in terms of what we were doing for him or her in this process.

And these ideas that Dan has brought out, and showing you what he appreciates and knows about these matters, would obviously enrich any actions that were being planned by the neuropsychiatrist.

CHAIRMAN KASS:  Does someone want to join either of these two beginnings?  Well, then, let me do it.  I'm sorry.  Peter?  Peter, would you turn on the —

DR. LAWLER:  It seems to me in the first case that it should simply be illegal to refuse the antibiotics.  There should be, and I'm sure there is, legal protection.  In the second and third cases, they regard prudential judgments, which I think are beyond the law, because chemotherapy, well, kind of depends. 

If it's a relatively light dose, but if it's a most — I've seen people with the most horrible kinds of chemotherapy, where I think you might withhold that for the reason that if you yourself, as a competent human being who didn't have all that long to live, were offered the possibility of chemotherapy, that would be a judgment you would make.  You might turn it down, or you might have it.

So someone who is — can't think for him or herself, someone has to make this judgment for them, and certainly you two seem very reasonable.  The presumption would be in favor of the treatment, I agree completely.  But I don't think it should be necessarily something — a legal matter necessarily, because of the great amount of prudence there, although I would be very much in favor of the presumption of treatment.

But, number one, I think it's a matter of the rights of the human being.  Number two, not so much.  Number three, again, it's a prudential judgment right.  They require many factors to be considered, if someone is going to die soon, who is severely demented and is going to die soon anyway.

So in the discussion this morning I was a little bit taken aback because the word "rights" is — in this best interest thing, I think there's a danger that the word "rights" never come into play at all. 

For example, someone who is the example Gil gave us, a baby who is retarded, I think it's a matter of rights that if there is a relatively routine operation that would allow that baby to live, the baby has the operation.  It's not a matter of anyone's prudence.  It's a matter of legal right.

So one thing we have to talk about is people, babies, people who are demented, and so forth, is this best interest thing I generally agree with, but there are limits to it, and the limits are the rights of the being involved.  I think we can get so caught up in prudence our rights disappears on us altogether.

I'm all for jettisoning autonomy as fundamentally an evil, unempirical word.  But I'm not so — I think maybe the danger of best interest talk is we jettison rights altogether, because I think in the first case here it would be — it should be simply illegal to withhold treatment.  Like for the baby who is retarded, it should be simply illegal to withhold routine treatment that would allow that baby to live.

DR. FOSTER:  Let me just respond.  You know, there actually are not legal rules about — of using antibiotics or not using.  That's left to the discretion of the physician.  And also, the use of a drug and something is not approved by FDA is at the discretion.  The remedy for that, if a person does not follow high quality, is actually vested in the courts from malpractice, and so forth. 

But there are no — there are not — you know, I mean, there are certain things you can't give narcotics, you know, without — and so forth.  But by and large, it's left to that, and sometimes because we overuse so many antibiotics, and so forth, if it was just a mild, you know, illness we just might, as a matter of practice, say, you know, they've got a cold and we're not going to give them anything. 

So I just wanted to say I don't — you know, it's not — I agree in principle with everything that you've said here, but there's not a — you know, it's not a governmental list of things that you can't —

DR. LAWLER:  Right.  But malpractice is a law, though, right?  You should be up on charges if you let that go.  And if anyone notices this, the person should try to bring you up on charges.  Not that you would ever do anything of this nature.

So, number one, it would be withholding of the antibiotics, or whatever, with the intention that the patient die as a result, not as a prudential medical judgment.

CHAIRMAN KASS:  Well, I mean, now there are several people to bother, starting with Peter.  I mean, you'll recall that in Eric's paper — and it consumed a lot of our discussion last time — was precisely such a case where you didn't have the surrogate decisionmaker, but the question was thinking it through for a person competent to refuse. 

And there was some discussion as to whether one was going to describe such refusal as opting to live a certain way while dying.  And a position I took, and was challenged by Charles amongst others, say, "That's just subterfuge.  This really is a choice to elect death by this means now rather than linger on with the other."  And there is a tacit sort of quality of life consideration that's there.

Even Dan, in his last remark — and by the way, I liked the comments, and I would happily place myself or anybody I loved in the care of both of these gentlemen — so I didn't dissent from things that were said.  But even in the very last comment that Dan made, talked about that there's not much meaningful life here, and when — the question was, whether there are these objective standards or values came up this morning, and Carl Schneider said, "Well, it all depends upon what they are."

Once you introduce the notion of the meaningfulness of life, then it's not clear to me that the judgment of that is the physician who is committed to making war on Alzheimer's Disease has the best perspective on what it means to live with that disease. 

So I'm going to use that as a transition to go back to — to Paul.  You are committed because you have a certain view of the worth of every human life, no matter how reduced.  You have a view of what your obligations as a physician are.  But I'm the spouse of this woman who has this terrible disease now, and let's put her in this immediate middle sort of condition, and you and I both know what's coming.

Do you want me to stop?

DR. GAZZANIGA:  No.  I'm going to answer your question.

CHAIRMAN KASS:  Oh, okay.  Good.


And I say, "Look, we've talked about this for a long time.  I know what she values about life.  I know what she thinks about her relation to her children.  I know what kind of memory she would like them to be left with." 

And I'm going to take a slight variation here on the case that Rebecca has given us, because chemotherapy — Rebecca has made it somewhat easy by saying the patient can't understand the restrictions or the physical discomfort that you're going to — we are going to subject her to by virtue of being — acting in her best interest.

But let's say she has a Stokes-Adams episode or something like that, and it's up to you and me to decide whether to put a pacemaker in.  And then I say to myself, you know what, if she didn't have the misfortune to be in our clutches, medically speaking, this might be a good way out.  I'm not wishing it.  I'm not trying to arrange for it.  It happened.

But we've now got a kind of new situation, which I want to say to you, you know what you're doing, Paul?  You're a good man, you're a good doctor, I like your values, you're going to make sure that people are not taken advantage of.  But in these circumstances, with this patient, you are, in a way, choosing not only to fight the disease but to make sure that the patient lives to suffer every last vestige of degradation that this disease is going to prove.  And I know my spouse, and she would hate me for acquiescing in that.

PROF. GLENDON:  What's Stokes-Adams?

CHAIRMAN KASS:  Just a heart block —

DR. FOSTER:  It's a loss of consciousness secondary to obstruction to the aorta.

CHAIRMAN KASS:  It's a brief arrhythmia of the heart which relieves itself, and for which the treatment is a relatively easy procedure.  You put a pacemaker in and a battery, and you can prevent it by and large from happening, unless — I'm all right so far, Dan, on — I'm okay?

Now, maybe Mike wants to solve this.

DR. GAZZANIGA:  Well, this gives you time to think, Paul, so I'll take a shot at it.  No, it's the exact middle ground question that is the harder one.  And so let me propose that what's emerging out of modern neuroscience, modern human neuroscience, are some remarkable findings that basically allow us to capture, using neuroimaging, whether someone in fact has a sense of self.

And so just to make it concrete, there are little tests that one can develop where you can see whether — I mean, it's a fact that if I give you things to remember that have self-reference to you versus reference to others, the ones that have self-reference to you are remembered better by you.

And these tests — and there are many, many of them like that — light up specific networks in the brain.  So one could imagine that you could take this profile, this new profile — before you're going to make this decision, your spouse has been worked up on these tests, which are going to show whether, in fact, any of the self-referential aspects of life are active, are working.  I mean, it's just going through.  There's no spark, there's no individual recognition, there's no evidence — and behaviorally, of course, that is apparent. 

But if that sort of biomedical aspect was brought to the table in this decision, would it not — and I don't know the answer to this.  I don't know what my position on it is.  But would it not add to the information people would want in trying to make this decision that this person simply no longer has active the neural networks that we know are crucial for recognizing new information related to the self versus others?  They're not there.  They're not working.

CHAIRMAN KASS:  You want that to count more than whether she smiles at me when I'm in the room?

DR. GAZZANIGA:  Those, as we all know, are tremendous — can be tremendous automatisms — automatic behaviors that are greatly fulfilling to you but have absolutely no meaning to the patient.  That's all we —

CHAIRMAN KASS:  But that's why — that's the point of introducing this.

DR. GAZZANIGA:  Yes, that's the heartache of the whole process.

DR. FOSTER:  I have a quick question.  In practice, I mean, to do that sort of imaging on everybody who is in this condition is going to bankrupt the country, right?  I mean, is what you would learn from that worth what the cost would be from, let's say, functional MRI or whatever you're talking about?

DR. GAZZANIGA:  Well, it just changes the flow of money.


It's the same dollar.  It's just, you know, where it floats through.

I mean, the fact of the matter is we're an affluent country.  There are people who would get the service, people who wouldn't.  So that — that point aside, I know that's a very complex issue.  But I'm just trying to think ahead to — I'm seeing what's in the tube here in terms of the neural networks that are going to be worked out. 

And someone is obviously going to say, well, should we apply these questions to the demented population to see if we should withhold medical care?  I mean, that's the only reason.  I mean, that's the only objective here.  But I don't know.  I don't know if it's a good idea or a bad idea at this point.

CHAIRMAN KASS:  You've had time to think.

DR. McHUGH:  Well, no.  I want — again, the real problem with these hypothetical questions is you can build a pig with wings, you know, and does it fly, or doesn't it fly, and how would you work with it?  And, you know, then I come back with other kinds of aspects of the hypothetical, well, you know, how has this person been doing?  How has she or he been enjoying the life that he's had so far up 'til now?  What was the original deal that we had together when we decided to engage in this battle?  And the like.

And most of the time I think that in these things the family turns out to, once again, follow the judgment of the doctor.  You said that, "I wanted to fight to the — into the third phase of Alzheimer's Disease," or something of that sort.  That's not necessarily true.  I might be prepared to surrender at an earlier time if things turned up.

But then you have to then — because you make this so personal, it becomes personal with me.  And, you know, I've watched the lights go out a lot, and let me just tell you it's — Dan will corroborate — it's not happy when the lights go out, and you don't like it, and nobody likes it.

And sometimes in certain situations, even though you have agreed that you're going to do one thing, at the moment you don't do one thing.  And I — I've gone over these stories before with this Council, so I won't bring my war stories back to you.

But for the most part, it seems to me in the situation that you put forward that if the doctor to whom you had entrusted this battle with, and whom had not only a relationship with you but a relationship with the patient after all because he has seen him or her since the beginning of this, that you and he — you might defer to his judgment, particularly if you came to agree that there were things that ultimately other than simply turning into a pretzel would — would get you — get the surrender to occur.

Now, but if you push your argument all the way to me and say, "Look, Paul, I want this done this way, and you want this done that way," given the social situation that we have, you dismiss me and take your patient home, and take care of her and you become the person.  And no longer am I — no longer am I the doctor/clinician in this situation.

I am not a waiter.  I don't bring you a menu.  I don't — I bring you a prescription.  I explain — I know I'm going on too long.  But this is what I do.  I bring a prescription that's based on my knowledge of you, the situation, the condition that we're in front of.  I want us to agree that this is going to be a 24/7 concern, I'm going to be thinking about, as you're going to be thinking about it — all the way.  We're going to take these judgments into account, but I'm going to do the prescribing. 

CHAIRMAN KASS:  With the Council's permission, may I go one more — one more round briefly to see if we can — this is not a question of who has ultimate authority.  It was really a question to your own thinking and how — it was, in a way, to wonder to what extent — and you partly gave — gave satisfaction in the course of that discussion where you say — when you say to the patient at the beginning, and it sounds like the tacit contract, "I'm with you through this disease thick and thin.  We're going to fight it together." 

That might be a very short conversation, or it might be a very long conversation in which the details of when we move from battle to surrender.  And it might be different in different patients.  I mean, you've indicated that in this reaction.

But it — I wonder whether it ever occurs to you as the physician in charge that you are, whether you know it or not, selecting this kind of death rather than that kind of a death for a patient, and whether that — whether these kinds of situations that Rebecca has elaborated for us don't somehow force that question in a way that it doesn't usually occur where you've got a sick person who comes for relief, you know they want to get well, you know they're going to be restored to their life, and the question is:  what's the most effective means to it?

We want to say — I think the group — so far no one in here has argued, so far, that we really want to say that the line between maybe allowing to die and deliberating killing should be fudged.  I think no one has dissented from the principle Eric laid down last time that there should not be an action which deliberately intends the death, elaborated by Robby and others.

But the questions about withholding for various kinds of reasons, without death being the simple choice, is a much more common decision than the circumstances that invite thoughts about assisted suicide and euthanasia.  And it seems to me that these kinds of cases in the middle are such, and we're trying to tease out the question of:  where one is in the presence of the kind of incompetence that, let's say, Alzheimer's, produces, especially in the advanced stages, to what extent that very condition and the life that the patient has is part of your consideration about intervening.

So far you and Dan have said, for the most part, not.  Dan said it quite explicitly.  The mental defect is no part of the consideration.  If it's medically indicated, it's medically indicated.  The last thing becomes optional, because it's not medical but nutritional.  And that, in fact, not doing so doesn't produce a painful death anyhow.

But I'm wondering whether it's too narrow to take a merely medical view of the kind of life that you are helping to sustain when you've got people who, if you act the way you normally act, you are, in effect, consigning them predictably to a kind of increased miserable conclusion.

I'm not arguing the opposite position, but I'd like to hear how you — how you would deal with a patient who has thought about this a lot, and who says, "Look, there is more here than just the body.  There is the life that this person had led and the relation to the children and the grandchildren, and I know what this person would like.  I know that the point of surrender for her would be a lot earlier than it would be for you or even for me."

And the best interests of this patient — of this patient might, in fact, permit one to forego treatment that the presumption, generally speaking, would be in favor of making.  And I think I spit that out tolerably well.

DR. FOSTER:  Let me try to answer this.  I mean, you know, all moral or ethical questions that are serious are gray.  Okay?  They're not black and white.  And most of the time the issues are not that complicated, and a prudential answer in the Aristotelian sense is just a common sense answer almost everybody will agree on.

So I'm not — if I'm taking care of you or Amy or something like that, and it looks like, you know, the Leon Kass that I used to know is — is not the same person, and that I know you don't want to be, you know, you're not going to find me fighting or Paul fighting to do that. 

If it's — I mean, it's pretty — it's not real hard, unless you have some mystical view that — that even though death is very near, that that — that every speck of sustained life has to be sustained to the last point, that's what you're arguing about.  Nobody wants to do that at all.  All we're trying to say — he uses the term "surrender."

You know, I mean, I — oftentimes, you know, we say, well, we're not going to do this.  It's not — in the first place, it's not medically indicated, and so forth.  So most of the time you don't — in big-city hospitals, which is where I work, I mean, we don't usually need ethics committees, and so forth.  I mean, these are — and they're not paralyzing things. 

I mean, occasionally they're paralyzing, but most of the time they're common sense that any — you know, you take 100 laypersons and show them — the person there, to look at them, and give them the facts, and they would almost always opt along the same line that the family or the physician want to do.

So I don't want to build this up as though this is some sort of a huge emotional problem.  Most of the time it isn't.  It will be if somebody feels radically that you have to sustain life to the very — you know, to the very end.  But day to day you don't see that, and most of the time it comes when there's a conflict within the family, where — you know, where a brother wants to do one thing and a sister wants to do the other.  We can't kill mom, you know.  Well, we're not killing; we're just not going to give her the chemotherapy, whatever.

I hope that's clear, what I'm trying to see here.

DR. McHUGH:  Well, and I want to kind of back that up, too, because that's exactly what usually happens.  It's a gradual process of understanding where we are, and we want the family, like Jim said he and his sister were, coming together about what these implications are and things move fairly smoothly.

The reason that I awoke to this idea of the Stokes-Adams, a sudden event, is that I've been in those situations when the promises that I had made, even I had made, I didn't carry out at that moment.  I might have mentioned this case before, but this was a case of a patient that I was taking care of who had advanced COPD; that is, difficulty in respiratory things.  And she as well had, as often is the case, serious psychological problems with it.

Now, I liked her very much, and I admired her husband and her family.  I knew them.  I thought the world of them.   And the one thing they had said is, and she had said to me is, "Don't put me on a respirator."  I said, "Don't worry.  That will be fine."

Well, this day she was with me on the psychiatric floor, and we were working on her emotional anxiety reactions.  And she just started to go right then, completely unexpected, her husband wasn't in town, nobody was there — just me, the resident, and her.  And it was like watching somebody carried out in the undertow, and I reached out, I got the code people, and I put the respirator on her.

That evening I went out thinking, holy cow, what have I done?  I've done all the things that are against what I wanted to do.  I had dinner with the Humanities Group at Hopkins, who I agonized — agonizingly told this little story to.  And I was savagely abused as a dirty rat, and I should have let her die.  Thanks a lot, fellows.

And then, the next day I came back, she was in the care unit and things.  Her husband said — I said, "Gee, I'm so" — he said, "I think you did the right thing."  I said I — and I went, "The respirator, I think we can get her off.  I think we can get her off.  It's going to take about three days to a week.  We can get her off."  And each day I would go and hold her hand, rub her shoulder, you know, "It's going to be okay."  And we got her off.

And when we got her off, it was clear now that everybody had now come to town, the children and everything.  She was very precarious, and we all agreed now that was it.  We had done it, but we weren't going to do it.  And in the next two weeks she slipped away, and everybody, including me, was pleased that I had reached for her at that moment.

Now, to come to your case, is the Stokes-Adams thing a sudden — well, I think if that happened right then, I was watching, I know I — I know what I'd do.  You just see them going, and you can't stop.  Then, after that, we could talk and all of us would be saying, "Okay.  This is not just a one-time event.  This is going to happen and maybe — let's decide whether we are going to put a pacemaker in, or maybe we won't."  And then, we would work it that way.  Okay?

PROF. WILSON:  Could I — what do you think of your colleagues in the Humanities Department who would attack you for having done this?

DR. McHUGH:  I just felt that — Jim, I just felt that they were part of the contemporary theory that, you know, autonomy is everything, the no sense of the community of which a doctor is a part, the relationship you have to somebody.  I just — well, I was zipped, of course, with them at the end, and I told my wife, "We're not going to have dinner with those people ever again."


PROF. WILSON:  Come over and have dinner with me.  I won't treat you that way.


DR. FOSTER:  A difference — the reason that you did I think absolutely the right thing is that she was not at the edge of life from her chronic obstructive lung disease.  And, therefore, this was a new thing, and she might have had six months or a year of good — relatively good quality of life.  So it was — your physician's instinct was absolutely correct here.

That might have been absolutely incorrect if this was case three who was lying there, you know, with nothing at all for you to intervene when, you know, your — so it's a different —

DR. McHUGH:  I just wanted to answer Leon's question in the experience.

DR. FOSTER:  It didn't negate your — what you had committed to do or anything else, because there was a new element that had entered into it, where you had to respond knowing that she might have — now she only lived two weeks afterwards, so it was close.  But a lot of times they're going to live for — so I'm saying, with Jim, that you got attacked in the wrong way for this one.  Okay.

CHAIRMAN KASS:  I have Gil, and then Peter, then Charles, in that order.

PROF. MEILAENDER:  I think this is becoming altogether too harmonious.


And I'd like to change that.  First — I have several different comments.  First, a comment on cases two and three as Rebecca has them here, not your reformulated one, which I'll come to.

I myself am inclined to think it easier to acquiesce in a family refusal in case two than case three.  In case two, at least in many circumstances, there might be some reason to believe that the patient found the treatment burdensome and was bothered by it in various ways, and it could not be explained to that person. 

And I would be inclined to take those sorts of reasons seriously.  I mean, I don't know if they're definitive in every case, but they'd certainly be powerful, and I wouldn't necessarily argue against them.

Case three, I think there was a kind of assumption in our discussion of it that this person was about to die, but I take it a person can be in an advanced state of dementia and live for — for some time.  And if that's the case, it's not clear to me that there is some reason in the best interest of this patient not to feed them.

You'll notice that it's also not clear to Rebecca, who says, "Although this option may not be covered by a narrow concept of the patient's best interest, it's often defended," etcetera, so that it's — I think in some respects it's harder to make a general case for refusing in the third instance than in the second that she cites.  So that's one comment I'd make.

A second one — Leon, you said that no one here had fudged the distinction between allowing to die and deliberately killing.  I don't think that's quite true.  I think you have fudged it.  in your discussion of — your reformulated case two, which I grant you is a different sort of case, but you'll recall that your — what you were going to say to, Paul, your doctor there, was that we know what's coming.  That is to say, what's coming is a period of time, a period of life, that we don't find very desirable, and would prefer not to — not to go through.

CHAIRMAN KASS:  That's an understatement.

PROF. MEILAENDER:  Yes, I understand that.  Which is to say, what you're saying is, so we will seize the occasion presented us here to — to decline to treat, so that she'll die now rather than at some other point.  That is to say, we'll seize the occasion to get this death right now.

Now, I want to notice that one could say exactly the same thing in case one with respect to the antibiotic.  There, too, we know what's coming, even though the person is in a mildly demented state.  And we don't find what's coming desirable, so we might well seize the occasion there also to — to see to it that that didn't happen.

So although I understand the — at least I hope I understand the difficulties of the kind of case you're talking about, I think that it's, at least in morality, much trickier in law I would certainly grant, but at least in morality there are certainly instances in which one can aim at someone's death by not doing something, or by withdrawing a treatment.

CHAIRMAN KASS:  Gil?  Just a tiny point, just a very tiny point.

PROF. MEILAENDER:  I've waited patiently.


PROF. MEILAENDER:  And my third point would be, if we're talking about boundaries, it seems to me that the furthest boundaries that we ought to set is to say that we ought never aim at someone's death.  We ought never deliberately aim at it, and we ought never make judgments about the comparative worth of other people's lives.

Now, it will be hard to know how to apply those boundaries in various cases.  They will leave room for all sorts of latitude in a lot of circumstances.  But that, it seems to me, is where we ought to start. 

So now you can make your corrections, Leon.

CHAIRMAN KASS:  Just a point of information, and then I — I really don't want to argue it.  I agreed — the case of the immediate fainting episode is very much like the patient — Paul's patient who turns — who stops breathing.  My question was:  do you then put the pacemaker in?  That's not somehow choosing death right now.  That's choosing to roll the dice on a cardiac death rather than a long, lingering death from Alzheimer's. 

And that, it seems to me, is not choosing death for the patient, but recognizing that I'm — by putting in a pacemaker, I'm in a way complicit in the very likely prognosis here.  And we don't know whether there's going to be another episode, whether it's going to be lethal.

The immediate episode, someone drops — stops breathing in front of me, I resuscitate them until I know otherwise.  So that was — it was just a factual difference, and, therefore, I don't think it's a case of electing death.

PROF. MEILAENDER:  I'd feel more comfortable about that answer if it were not for your formulation about we know what's coming.  It seems to me that that does imply certain kinds of judgments at work.

CHAIRMAN KASS:  Thanks for your indulgence, Peter.

DR. LAWLER:  All right.  I first want to say, case three, read the way Gil read it, he's right.  Case three is not really fleshed out enough to be read at all, I guess.  It's really information-short.

But I think I agree with Gil on — on Leon, too, being a little bit overwrought or Nietzschean about all of this or something.  For example, if you yourself have some horrible disease that has just started up, and you know what's coming, but meanwhile you need a pacemaker to get through the day, you can turn down the pacemaker, if you want, as a competent human being.  And we can divide up into small groups and argue whether you're courageous or wimpish about that.

But when you're deciding for someone who is moderately demented, it's quite different.  I think you would have to go with a pacemaker; it's a simple procedure.  And all your talk about "given the life this person led" — . , this person, as Rebecca points out so eloquently in her second article, this person is not living that life right now.

She points out people with Alzheimer's are a lot happier than they ought to be, given what's coming and everything.  So you're kind of imposing that person's, you know, kind of autonomous framework or something on the person's present being, which is really quite different and not nearly so anguished as your view of that person's present being.

So from my point of view, putting the pacemaker in, which I guess does not hurt very much and is relatively routine, would not be — especially in light of what's coming, would not be a close call at all, and shouldn't be regarded as a close call.


DR. KRAUTHAMMER:  First, to answer Jim Wilson's question about how Paul felt at the Humanities dinner, I think the appropriate answer would have been to go to Medical Records, pull the chart of every member of that group, and write in "DNR."


Poetic justice for them.

CHAIRMAN KASS:  Do you want this on the record, Charles?

DR. KRAUTHAMMER:  Absolutely, yes.


I've written a lot worse.


In answer to Gil's point, I think your trouble was with Leon saying, "We know what's coming."  What if he had said, "We know where you are"?  In other words, what if the criterion for the heroic intervention, or semi-heroic, or intervening at a point where it looked as if nature was going to act as the undertow, to quote Paul?

What if the criterion were not what's coming but the state that you're in?  And what if I were to propose that the decision you'd make is whether the person, in their present condition, were relatively happy or comfortable if unpleasant — in an unpleasant situation versus whether the person was either suffering or degraded?

That's not a projection of what's happening in the future.  It would be an assessment of where they are now.  And I think you could make a reasonable argument for making a decision about intervention of the kind Leon was discussing on the grounds of suffering and degradation — again, assuming that you're not — you're acting in what you perceive as the best interest of the person rather than a subjective projection of what that person would want, assuming we'd really have no idea what that person would want.

I think we can promulgate reasonable rules.  What I would like to suggest is that we ought to promulgate the rules with the understanding that there will be very little sanction for those who transgress.  For example, the bright line rule that Leon had suggested earlier, you don't kill, but under certain circumstances you withdraw treatment, which is exactly how we conduct medicine in the real world all the time.

I think there's a very bright line, and yet we know that we have a rule of secondary effect in which you'll give an overdose or a high dose of morphine to treat pain, knowing that it may have an effect, or it will likely have an effect of killing a patient.  I'm not sure any of us — at least in law as I understand it, it's permitted.  I'm not sure that ethicly it ought to be not permitted.

In other words, even the bright lines that most of us accept I think we also accept with the understanding that given the individuality of every case that it is impossible to make rules that are universal, and that we ought to have a high tolerance of those who will transgress them in particular circumstances.

CHAIRMAN KASS:  Do you want to respond, Gil?

PROF. MEILAENDER:  Just very briefly in terms of your question about, what if we simply asked what the person's current state is?  I mean, I think that's a good and a perfectly reasonable question to ask. 

But I believe, at least the formulation that I tend to use, that I would want to use in reply, is that I would say that I would want my decisions about what I did for that person to be based on whether there was anything I could do to benefit the life that person had, not on a decision about whether having that particular life was itself a benefit.

So I'm perfectly happy to think about their current condition, but even then I'm not prepared to make a judgment that they have a life that is itself not worth living.

DR. KRAUTHAMMER:  Well, the word "worth" I think is — is — it complicates, and I think it distorts.  If I'm in the presence of a loved one who is suffering and demented and can't act on their own, and the Leon event occurs, the Stokes-Adams attack occurs, I would be inclined to do nothing to end the suffering. 

It's not a judgment on the quality of life.  It's a judgment on whether — whether — it's not a judgment on whether it's a life worth living, that it's a matter of worth, it's a matter of humane fellow sympathy.  Would I want that — do I believe that a person ought to continue to suffer, which would happen if I were to rescue that person or not?

So I don't look — it's not as if — if you have a patient who's not suffering, but is incompetent, is essentially out of touch, I think that's a question of the value of life.  In the question of suffering, I think it's different.  It's not a question of worth; it's a question of the subjective experience.

CHAIRMAN KASS:  Well, let's stay with this exchange — I think this is fruitful — if Gil — if you and Charles would go one more round.

PROF. MEILAENDER:  Well, just a sentence in reply.  Obviously, I would — at least I would hope I would want to do whatever I could to relieve the suffering that that person was undergoing.  But I would not want to try to eliminate the suffering by eliminating the person suffering.

And there again, you see the question is whether what I'm taking aim at is the suffering or whether what I'm taking aim at is the person's life.  That's just another way of coming back to my same formulation, I realize, but that seems to me at least to be the boundary-making distinction within which, then, I want to leave as much latitude as I can for trying to make a whole range of decisions, and perhaps even for having people make different kinds of decisions.

DR. KRAUTHAMMER:  Well, then, if I could just add the one sentence, I think it's illuminating, because you would decide on that basis.  I would decide on the basis of the other rule, which would be that I would not actively intervene to kill under those circumstances.  However, in the presence of suffering, that was — I was not able to alleviate otherwise, I would allow nature to take its course in the event of a — of, say, a Stokes-Adams attack.

I think those might be two approaches of using a different set of rules to the same person.

PROF. MEILAENDER:  If I really thought that my moral obligation under those circumstances was not to intervene, so that the person would die and, hence, stop suffering, if that's what I really thought, then I hope I would have the courage to intervene more directly in order to end their suffering and not let them linger in it.

DR. KRAUTHAMMER:  And I would act —

PROF. MEILAENDER:  Because I don't think there's a moral difference.

DR. KRAUTHAMMER:  I would act exactly differently.  I would not implant the pacemaker.

CHAIRMAN KASS:  Robby, are you going somewhere else, or are you going —

PROF. GEORGE:  No, I just have a question about this, and it's —

PROF. GLENDON:  I think Robby is in a state of shock over here.


PROF. GEORGE:  Maybe puzzlement, because I'm with Gil; I don't see the distinction in — in terms of the intention, and, therefore, in terms of the morality of simply omitting to act or declining to intervene with the pacemaker and shooting them in the head.

DR. KRAUTHAMMER:  I think the reason for observing this line, or at least promulgating it, is a prudential one.  And that is that if you don't have the line, you will end up like — well, let's assume Holland is what we're reading about.  You will end up euthanizing people without limit.

I think the — look, we're having a discussion here in which we don't know where to draw a line.  We keep saying it's a matter of case after case.  I think a line has to be at least promulgated, if not a legal then at least a moral line.  And I think the distinction between active and passive is clear.  You're right that ultimately in terms of intent it's hard to make a distinction, but I think if you abolish that line then you've abolished all restraint on the euthanasia.

But I think if you were in the presence of such a case, I mean, it's easy to say, "Here, I would implant a pacemaker," I'm not sure how — I'm not sure you would, although I — if we're faced with the circumstance, I think there's an impulse in us to say there's no reason to impose endless suffering on — in a person in whom nature or providence has already intervened.


PROF. MEILAENDER:  Well, I don't know how to — how to make the point.  I would rather have the rule formulated, or the — just the boundary, the statement of the boundary, as it should never aim at a person's death, rather than your active formulation.

I grant you that your active formulation is much more conducive to — I mean, you could adjudicate it in a court of law, for instance, in a way that it's very difficult to adjudicate intention, and so forth.

But the reason I'd rather state the boundary the other way, not simply in terms of the active/passive distinction, is that I want us all at least to have to think about the fact that we might, on any number of occasions, deliberately seize occasions to get someone to die by not doing something. 

I mean, I want us to have to keep that moral question in mind at least, because, in fact, I think that at the moral level embracing the person's death as choice-worthy there isn't different... even though I grant you that in sort of public policy circumstances your rule is easier to apply.

But we need — we need to continue to think about and be faced by the fact that we might turn ourselves into people who are eager to seize occasions to get people to go away.

DR. KRAUTHAMMER:  If I could just add one thought.  The reason I would adopt it is not — the line I'm suggesting — is not only because it's easy to adjudicate and, of course, a law, but also because I have a sense that if I were the one who were the sufferer, and I had an attack of this sort, I would want no one to implant a pacemaker. 

So I am generalizing in sort of an act of human sympathy, if I can speak in those grandiose terms, from what I would want and what I would assume — starting with what I would experience and want, I'm assuming it would be an act of mercy on the part of anyone who was in that circumstance to deny me a life of further suffering.

PROF. MEILAENDER:  And if I were the person in case one, with the mild dementia and in need of the antibiotic, there is certainly a level at which I would want people not to keep me alive.  Okay?

DR. KRAUTHAMMER:  No, that's an easy call.

PROF. MEILAENDER:  Well, no, I — just in terms of what I would want, taking seriously Leon's comment about I know what's coming.  Okay?  There is certainly a level at which that's what I would want.

DR. KRAUTHAMMER:  You could talk about a 20-year-old person with depression and say you ought to listen to what they want.

PROF. MEILAENDER:  Well, let's eliminate the depression.  Okay?  Which is an underlying condition.  Let's just grant a rational deliberation.

The simple fact that I would want that doesn't settle the question of what I ought to want someone to do, or what I ought to do for someone else.

PROF. GEORGE:  Laying aside —

DR. KRAUTHAMMER:  And what decides what you ought to, if not that?

PROF. MEILAENDER:  Sound moral reasoning, which I have just offered.


PROF. GEORGE:  But have you?  Since if you're right, then — and by your being right, I mean, if it's right, if it's accurate to describe declining to go with the pacemaker as an act of sympathy and not an act of killing, then it would have to be also accurate to describe injecting him with a poison, shooting him in the head, as an act of sympathy rather than as an act of killing, even if as a prudential matter we would want in our medical practice and in our law to draw a distinction and to punish the latter, the active killing, and not to punish the omission or the passive, well, act of sympathy or whatever you want to call it. 

I mean, just in terms of the truth of the matter, laying aside —

DR. KRAUTHAMMER:  But that's precisely why I'm invoking two principles and two reasons.  One is sympathy, and the other is a prudential argument against erasing all lines and allowing unlimited actions of this sort.  Yes, if it were only sympathy, I mean, I can even imagine a case in which someone actively overdoses a patient in great suffering.

I'm sure it happens a lot.  It's probably written off as a double effect.  It probably isn't double effect, and I would appeal to my colleagues here as to whether I'm wrong — my medical colleagues — as to whether I'm wrong about whether or not this actually occurs.  I'm sure it does, but you don't want it as a rule and a principle.  You want to say it ought not be done, because once it's allowed, as in Holland, there is no end to it.

PROF. GEORGE:  I do understand the prudential judgment and the slippery slope argument.


PROF. GEORGE:  I'm just interested right now in the principle and the accurate description of the act.

DR. KRAUTHAMMER:  If it were only a matter of sympathy, yes, shooting would be allowed.  But it isn't only a matter of sympathy.

PROF. GEORGE:  No, no, not whether it's allowed.  I want to know, when we shoot him, are we doing anything morally different from what we're doing when we take advantage of the fact that he has just had the seizure and don't intervene?  Or when we don't put in the pacemaker, though we could, without — I take it, Leon, without great burden, right?  Without an extraordinarily burden.

DR. KRAUTHAMMER:  If someone is drowning and you decline to go in and save him, is that the moral equivalent of you drowning him in a bathtub?  Is that what you're saying?

PROF. GEORGE:  If the objective of my —

DR. KRAUTHAMMER:  I'm simply asking those — are they equivalent moral actions?

PROF. GEORGE:  It depends on the reason for the action.  But let's assume that the reason for the action in both cases is that he's my enemy and I want him to be dead.  Then they're the same.  If it's that I can't swim and would —

DR. KRAUTHAMMER:  I'm assuming you could swim.  Otherwise, it would be a lousy example.


CHAIRMAN KASS:  Alfonso, go ahead.

DR. GÓMEZ-LOBO:  I don't know if this helps, just a — one more effort to articulate this.  It seems to me that in cases of active euthanasia there is a necessary connection between that and the intention to kill.  In the case of omissions, surely there can be a connection.  They can be the sympathy intention.

But I do think it's contingent.  I think that there is room for omissions such that one can engage in the omission without the intention to kill, and that's the reason for Robby's question about burden. 

In other words, in certain parts of the world I'm sure that putting in a pacemaker is a huge investment and a big burden for the family, etcetera, etcetera.  And it seems to me that in cases like that, a possible interpretation would be that there was no intention to seize the occasion, that there was another reason for it.

CHAIRMAN KASS:  Let me try again.  Look, I'm — I'm very friendly to the morally scrupulous and high-minded arguments of Gil and Robby, and I'm very sensitive to the prudential worry of what comes when you start to open this up.  But I continually have this feeling that I'm being beaten around the head by morally superior reasoning, which flies in the face of common sense.


And so I think I know why you guys won't allow me to say, "Fellows, look, it's a new world — this world of mass longevity and 40 percent of it in frailty and debility."  And you can say, yes, it's true that we don't know the future, the future is — you could be run over by a truck before you can get the last stage of Alzheimer's Disease.  But this is a progressive disease, and in most cases it goes the way you know.

What's wrong with my saying to you — I've got two questions for the scrupulous.  One question is:  why is it that you are so quick to allow an exemption for a newly-imposed medical burden of the treatment, which is, after all, a burden to the life of the patient, but refuse to allow into consideration as an assessment what should be done, the burdens that the patient is suffering, that you haven't had?  From the point of view of existence, it seems to me, why — why make those distinctions?

Second question:  why is it — am I simply perverse when I say that there are some circumstances in whether — in which the true decision that you're making, whether you know it or not, is not a choice for death but a choice of which of the two paths to inevitable death you are forcing me to take, or inclining me towards, since there's no guarantee that I'm going to get to the end by either of these two paths?

And, in particular, what — well, that would be, I think, sufficient.  I could make it sort of vivid — in which you rescue or I rescue my spouse by putting in a pacemaker.  And assuming there's a next life, I can fully expect her to remonstrate with me in saying, "What kind of superior moral reasoning justified your condemning me to a decade of not being myself and of not having the kind of relation to my grandchildren that I want, rather than allowing me to live in the crap shoot of another cardiac arrest, which would take me off?"

What answer would I give to her as a result of having been persuaded by superior moral reasoning?

PROF. GEORGE:  Well, on the latter, I think you would say for the same reason that I didn't shoot you.  Or you could — you would have the same problem if the spouse in the afterlife said, "Why did you condemn me to 10 years when I asked you to shoot me?"

CHAIRMAN KASS:  I think there's a real difference here.  That is to say, look, I know we live in a new world, and those things can't be wished away.  But people didn't call pneumonia "the old man's friend" for nothing. 

There are these new things — there are ways in which — should the mere fact that I am in the clutches of a profession that can remove all of the immediate causes of death, can deal with all of these new episodes, enable those people to say that they will never somehow choose death and, therefore, they're not only going to rescue me when I fall on their doorstep — and, of course they're going to rescue me — but they're going to set up situations in such a way that I'm going to be compelled to live out this 15 years of degradation, some of which — I don't want to make it only in the future — some of which I am already suffering, and the intensity of that suffering I can see.

I'm not somehow arguing for early surrender in every case or in all cases.  But there's something in me that resists the claim that this sound moral reasoning has to govern here for the right choices to be made, where you consider the full human significance of the life. 

And part of that is I don't see why you should privilege just the fact that this operation that you're going to give me is going to leave me with chest pain for a few weeks or the chemotherapy is going to make me vomit for a while, when I'm scratching myself to pieces or cursing the nurses or engaging in wild sexual activity with the other patients in the nursing home.  And that's a terrible thing, terrible thing.

DR. KRAUTHAMMER:  Could I ask Robby and Gil, are you saying that there are no circumstances under which you would ever withhold treatment of an incompetent patient?  Is that right?  Am I reading you correctly?

PROF. GEORGE:  No, that's not correct, Charles.  I thought that Alfonso explained —

DR. KRAUTHAMMER:  Under what circumstances would you withhold treatment that would lead to death in a patient?

PROF. GEORGE:  Where the burdensome nature of the treatment was such that it provided an adequate reason to withhold the treatment.

DR. KRAUTHAMMER:  So only if the treatment itself is worse than the suffering already existing.  So if I give you a case of an easy treatment, you would always say that as long as that treatment, in and of itself is not terribly suffering-inducing, there are no circumstances under which it should ever be withheld?

PROF. GEORGE:  I think there are no circumstances under which you would want to treat the life as the burden to be removed, as opposed to the burdens of the treatment.  So if there are no burdens to the treatment, and the only thing you're inviting me to do is to treat the life as the burden to be removed —


PROF. GEORGE:  — then I —

DR. KRAUTHAMMER:  Then your answer is yes.

PROF. GEORGE:  — say it would go with the treatment.

DR. KRAUTHAMMER:  And you too, Gil?  Always yes?

PROF. MEILAENDER:  Yes.  I have more to say than just that, but —


The important reason behind this is I think an attempt precisely to — to treat human beings equally, never to make judgments about — comparative judgments about people's lives, and it's, of course, true, as Leon says, that he — he wants to know why we'd be willing to refuse the burdens that come with the treatment, but not as it were to refuse all the burdens that already may come along with a life. 

And it's a pretty rational question; I don't — I don't mean that it's not.  But it's a question of what it is that I'm — I'm thinking it's permissible to turn against.  And I'm not going to turn against your life.  I'm going to do whatever I can to benefit the life you have.  It doesn't mean that one must take any and all burdens that come along. 

I think the point is that — that at different points in life there are a different range of choices, but we all have a range of life choices.  You don't have to choose for yourself, or even necessarily for others, always the longest life.  You may choose a shorter life free of certain burdens, for instance.  That's possible, from among those range of choices.  But we — what we don't choose for other people is death.  We don't view that as choiceworthy.  So that's something of what I'd say in response to your first claim. 

With — or your first query.  With respect to the second one, I do think you have an inadequate understanding of the afterlife, Leon.


All will be forgiven at that point, and you don't have to — you don't have to worry that you'll be under attack in that way.


CHAIRMAN KASS:  I'm looking forward to the judgment.


PROF. MEILAENDER:  But there are always — I mean, it's true that in keeping us alive at any point along the way medicine is predictably keeping us alive for potentially worse deaths.  I mean, I don't know how to get out of that.  It's a terrible truth about life, actually, that that's the case.

But that's part of — that's part of sort of sharing the burden of human life equally, it seems to me, and I don't — I don't think there's anything very good to be done about that, except endure it together as best we can.

DR. KRAUTHAMMER:  So you and Robby would outlaw all DNR instructions in all hospitals.


DR. KRAUTHAMMER:  Well, I don't want to prolong this, but I'm puzzled.

PROF. MEILAENDER:  Well, in the first place, are you talking — many people might request such for themselves, and we haven't — I presume that you're not asking about that.

DR. KRAUTHAMMER:  For all incompetent patients, you would not allow DNR to be written on their charts?

PROF. MEILAENDER:  No, not necessarily.  It would depend on the circumstances.

CHAIRMAN KASS:  We're going to wind up shortly.  If anyone wants a last comment after Mike, let me know now and —

DR. GAZZANIGA:  I think I win if I don't say anything here.


CHAIRMAN KASS:  I'm sorry? 

DR. FOSTER:  Let me make one last —

CHAIRMAN KASS:  Dan will go after you, Mike.  Dan will go after you.

DR. GAZZANIGA:  Okay.  You know, if there was only one person in the world, there wouldn't be all this talk about morality.  Morality starts when there's a group.  And so if you take this incident, this situation of withholding the drug or shooting as being morally equivalent, you're looking at it from the perspective of the person doing the pacemaker placement or the shooting.

If you're looking at the exact same situation from the viewpoint of the person with the disease, it's two completely different things going on — one, withholding of activity; two, murder, being shot by this person.

So it seems to me that you're conferring to the — to the person trying to help there two totally different mental states.  And so I find it very difficult to view this as a unique — I mean, as only one way to look at the moral action going on in this particular problem.  It comes — there's two different — totally different viewpoints that are at stake in this one act.

CHAIRMAN KASS:  Dan Foster, and then we'll take a break.

DR. FOSTER:  I only want to cite psychiatrist Prakash Desai that I have cited I think on one other occasion here when in the midst of theories of bioethicists I was the only — I'm not a bioethicist, but I happen to be the trustee of the thing, and he — we were talking about end of life decisions when that was the big, hot subject, you know, a few years ago.

And Prakash Desai, who is of Hindu — his faith is Hindu, said to us as a group — and I want to remind everybody here, because I think it's a powerful lesson to remember.  He said, "You Westerners have it all wrong.  Death is not the opposite of life; it is the opposite of birth." 

And this conversation has lifted up in some sense the idea that there is some — that death is something special in life, and, therefore, must be protected at all costs and as a consequence that to allow — in the extreme, to allow it to occur is not an acceptable thing for us to do.

Now I know that's an exaggeration, but what I simply want to say is that death is not the worst enemy in life.  It's not the worst enemy in life for anybody.  We hate it when it's premature.  We hate it when it's suffering.  But we need to keep into context that at the very least, in terms of the universe, we live maybe — maybe a femtosecond — I don't know, I haven't made that calculation — but, I mean, it is a tiny flash. 

And to have — you know, not to accept that, and just to say this is a natural thing and we ought to do the best we can to be kind, and so forth, and not to make mistakes of killing somebody prematurely, or something like that.  I just think we need to keep this in perspective, rather than the whole conversation as saying the end of life, where there's not — which entropy itself is going on, you cannot stop entropy. 

We're going to all die, and all of us want to die healthy, with an intact mind, and to die rapidly, but that doesn't happen to all of us, or for most of us.  And so I think one of the things — I don't disagree with a lot of the arguments that are made, but I certainly don't want to make this the key issue of what we've been talking about, that we must keep people alive for all time, whether there's — I hate to use the word, whether there's any meaningful life or not.

But if you can't tell that a life is meaningless, except in some hidden view maybe of the creator of the world, that there is some spark there, then you don't know what it's — you know, where they're defecating against — they can't move, they can't do it, you're paralyzing the family, and so if you can't tell the difference, then I wouldn't pay too much attention to a Ph.D. degree or — a Ph.D. degree or an M.D. degree or anything. 

If you can't tell the difference between that, then really you and I have no conversation to take place, I mean, because it just — it just makes you park aside, it seems to me, the sensory realities that all of us say are of necessity to make decisions.

That may have come out mean, and I didn't mean it to come out mean at all.  I just wanted to say — if you live all your life either in fear of death or thinking that death is the most important thing to prevent in life, then it's pretty hard to have a happy and a mature and a normal life.

If that was too mean, strip it from the — strip it from the —

CHAIRMAN KASS:  Well, no.  Let me make — use the chair to just make one comment.  I don't — I think it's possible to hear the arguments, say, made by Gil and Robby as sounding like a kind of mere vitalism, in which death is the ultimate and the only enemy. 

But the more I listened — and I think this is an important point for all of us to take away — it's not so much that death has always to be opposed.  It's that one should resist the temptation to put oneself actively against a life on the grounds that one knows and can take the measure of its ceasing to have sufficient worth to be here, and that it's sort of — it's not so much the judgment that — that death is the evil, but that there is an evil in ourselves that would come from, I think, making ourselves the judge and executioner of a life because of our judgment that it is somehow not worthy — fit to be amongst us.

I'm not defending their view, but I didn't think I heard — I think you made this comment in a similar point in the last meeting, and I think it was very well received.  I don't think there's a person in this room that would dissent from what you've said.

PROF. GEORGE:  Yes, that's absolutely right, Leon.  I think either individually —

CHAIRMAN KASS:  Maybe I'm wrong.  If they dissent, they should.

PROF. GEORGE:  Individually and collectively, I think Gil and I have spoken and written against every single one of the propositions you warned against, against the idea that death is the worst possible thing, against the idea that you must struggle to keep alive at all costs, against all of those things.

And I just — I'm not going to accuse you of being mean at all, but I — I do want to put in a — register a concern that you not hear people who think that we have very, very good, indeed compelling reasons to stick to the traditional norm against direct killing of innocent human beings.  Don't hear that as an appeal to vitalism or as to the idea that — that death must be opposed always and at all costs.  That's most definitely not what we're saying.  In fact, we've written against that view.

PROF. MEILAENDER:  We belong to a —

DR. FOSTER:  But in answer to Charles' questions, I thought I heard yes and yes.  Look, I've spent my whole life along the — you know, I mean, I'm violently against killing people and euthanasia, and so forth. 

But I heard towards the end, when Charles pushed both of you, that it came out that under no circumstance, except the person herself deciding for a DNR, that the answer was yes, yes, and there were no qualifications on it.  That's what caused me to say what I said.  It was unequivocal, yes and yes.

And if that's wrong, then I need to be corrected.  And I — I'm really pleased with what you said.  I obviously have not read everything that — you know, you've written about it, and I'm sure you have.

But that's what prompted me to say it was these two unequivocal yes and yes, and —

PROF. MEILAENDER:  Well, I didn't say that unequivocally.  I believe I specifically said in response to —

DR. FOSTER:  For somebody else to — if the patient —

PROF. MEILAENDER:  No, I started with that, and then I said not necessarily always.

DR. FOSTER:  Then, give me.  Okay, it's —


CHAIRMAN KASS:  Okay.  I think —

PROF. MEILAENDER:  One more sentence.

CHAIRMAN KASS:  The very last sentence.

PROF. MEILAENDER:  Just to add to what Robby said, we belong to a tradition that honors its martyrs.  We can't possibly think that death is the greatest evil.

CHAIRMAN KASS:  On that theological note, we will take a 15-minute break.  Five minutes to 4:00 we have a presentation from Frank.

         (Whereupon, the proceedings in the foregoing matter went off the record at 3:40 p.m. and went back on the record at 4:00 p.m.)


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