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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 with this.

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 practice.

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 to.

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 disability laws.

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 exist now.

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 here?

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 be harmful.

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 things.

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 intimidated?

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 situation.

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 do.

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 that directive.

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 standard, right?

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 think.

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 queue.

[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 with.

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 be inhumane.

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 challenge.

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.

Gil?

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 the problem.

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 comment.

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.

 


  - The President's Council on Bioethics -  
 
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