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Friday, September 12, 2008

Session 4: Medical Futility in Context: End of Life Treatment and Care

Linda Emanuel , M.D.
Buehler Professor of Geriatric Medicine and Director, Buehler Center on Aging, Health, and Society, Feinberg School of Medicine, Northwestern University


CHAIRMAN PELLEGRINO:   Good morning. I usually say good morning several times, and that gradually will bring together the troops. Good morning. This is the final good morning.

This morning we turn our attention to a new subject, a different subject, a subject of futility, recognition that, as mortal beings, at some point in each of our lives we will be beyond medical rescue. And then the question comes, at least one of the questions, a clinical aspect of it, how do we approach that moment and how do we decide it and by what criteria and what are the ethical considerations and desiderata that one has to take into account.

Our first speaker on this subject is Dr. Linda Emanuel , who is the Buehler Professor of Geriatric Medicine and Director of the Buehler Center of Aging, Health, and Society of the Feinberg School of Medicine of Northwestern University .

I have known for many years. I alerted her to the fact that we would not give a long introduction, so she understands that. But she is a distinguished person in this field. Linda , it is all yours.

PROF. EMANUEL: Mr. Chairman and members of the President's Council, members of the participating group, I'd like to add my good morning to the several we've already had, and I would like to add my thanks for the privilege of addressing you at this point, a full 15 years since the President's Council addressed these issues once before, and I'm acutely aware, having arrived past the 50-year mark in my own life, that it is a rare privilege to mark some of the small steps in historical development of the human struggles with concepts in medicine and concepts in policy as to how we deal with them. So as we take this opportunity to mark some of the progress in the last 15 years, I stand before you with that degree of humility, which is profound.

What we would like to do is consider where have we come from in the issue of futility over the years and, also, where do we go from here? What we'll cover as we consider the question of where we have come from is a little bit of history and background. That will cover some of the technical capacity, its evolution, and also the patient/physician relationship and its evolution in significant part in response to the technical capacity's evolution.

We'll look at some of the conflicts that have fueled these developments, and we'll look at the place in which I think it's fair to say we have arrived, looking at the balance of excessive versus insufficient intervention towards that Twilight Zone of life. Once we have done that, we'll take a look at defining medical futility before we go on to consider where we should go from here.

So very briefly, the technical capacity is something that really requires, I think, only a few visual images to remind us of where we have come from, and I personally think that we can mark the beginning of the relevant technical development to the iron lung. And here's a picture of the top of a woman who is in the iron lung. I believe it's a woman. It's not entirely clear.

And I say that because this machine most remarkably engulfs the entire person except for the head and was a striking statement of the way in which our technical capacity took over the rest of our humanity in a really powerful fashion.

As we move beyond the iron lung, we came across the era in which we had discovered how we could start the heart up again that had stopped, and this was a method that was developed, actually, for use in the setting of the operating room with the idea that especially the young and healthy person who may have had a cardiac arrest due to a surgical procedure's intervention could be saved.

The methods, however, were used far more broadly than that. They were used in the emergency department, throughout the hospital, then in the field with EMT training, and now we see it throughout our hospitals and elsewhere. And that picture that is second in the cascade is an illustration of some of the extremely intense activity that happens around a person as they arrive in the emergency department.

Now, the next step was the evolution of our capacity to support life in an advanced life support setting, the evolution of the intensive care unit and in many iterations, first of the development of multiple disciplines within medicine: medical intensive care, surgical intensive care, pediatric/neonatal intensive care. These are all now very well-funded, very well-defined disciplines within medicine.

And, finally, we developed the capacity to sustain life not only in the instant and in the advanced life support setting but in the chronic condition, and the final picture is a picture of a dialysis unit, and there's somebody's kidney or many people's kidneys sitting right there next to an easy chair.

So, now, I'm fully aware that I am addressing people who are well advanced, indeed, national and international leaders in medicine, and I've chosen to describe these technical developments in lay terms not by way of reducing the importance or the sophistication of the understanding, but by way of raising us to a 30,000-foot level. These technical capacities had human meaning, and it's the human meaning that I'm seeking to emphasize in this description of our developing technical capacity.

So how did this correspond to a development in our understanding of the relationship between clinicians and sick people? Well, first of all, it evolved from being the physician/patient relationship to the patient/physician relationship. But then, in addition to that — and I think you had some considerable thought about the evolution of this relationship yesterday, so I won't dwell on it for long. But the models in which we thought about the physician/patient and patient/physician relationship really evolved.

Along the left-hand column, I've listed some of the models. Along the right-hand column I've listed some of the decision-making methods that illustrate that. So coming into the present era, we arrived with a paternalistic model of the physician/patient relationship in which the notion was that because of his superior technical understanding and medical understanding, the physician was supposed to find the best-interest decision on behalf of the patient.

But as we entered this era, we began to have a very strong push back in the medical profession from our fellow citizens, patients, and their families who wanted a lot more information. They wanted to share that information which had driven the paternalistic model.

So we came to the point where we had an informative model, and here we began to see that the physician was sometimes described as a plumber, even, a technical expert. Now, in today's world of information technology, IT people are not mere plumbers. They're not mere technicians. So we have a more exalted view of what technical expertise involves and don't say "mere" in that fashion.

But then we were looking at what seemed to be a demotion in the role of the physician and a promotion in the role of the patient and the family member. They wanted the information in order to be able to make directives, make the decisions themselves about their own healthcare, and that corresponded, also, to the development of making prior directives, so extending their ability to make decisions to include ourselves, since we will all be patients one day, if we have not already, into the future.

That model clearly had some deficits in that both patients and physicians felt the lack of interaction and discussion. Patients felt the lack of guidance, and physicians felt the lack of ability to discharge all of their duties. And we began to consider the interpretive model, in which the patient and physician would together work on how the information could be used to discern the best decision for that patient.

And here the new standard was substituted judgment, which can in some cases be significantly different from best interest judgment. The judgment to be rendered is a decision that is supposed to be the best possible interpretation of what that patient wants, what that person wants.

Even that model seemed a little inadequate to some folks, and the next model that became a subject of discussion was the deliberative model, in which the patient and the clinician would together discuss not only the information and its interpretation but what would be the best decision for medical health standards. And here the relationship seemed to epitomize a kind of decision-making that used a reasonable person's standard but still specified to that individual patient and their context.

So very briefly, that is a summary of the way in which our relationship evolved, the relationship between ourselves as patients, as family members, and ourselves as physicians and other non-physician clinicians: nurses, social workers, pastors, pharmacists, and so on — quite a different relationship.

And depicting where we have arrived in visual form, I think we can see it in this diagram, where the patient sits firmly at the center. And we talk a great deal now about patient-centered care. But the patient is also embedded in the context of family and of community, and the lines depict the clinician. And the notion there is that the clinicians provide a safety net and set of directions and a network of care that embraces not just the patient but also the context in which the patient lives. And this whole thing is embedded in a larger society context.

So I think that this is a fairly settled understanding, now, of the way in which we relate. I don't say it's a simple understanding, but I do say that at this point I think it is fairly settled.

So what were some of the conflicts that fueled the discussion and fueled this massive evolution, subtle, yes, but massive, also. Some of the landmark cases I'm just going to put biopsies, if you will, in front of you because you know these cases very well.

There's the case of Dax Cowart. He at the age of 25 was a — I believe a Navy but certainly a military enlistee, survived a fiery accident in which 60 percent plus of his body was burned, and he lost the sight of one eye and had a very, very difficult recovery in which he repeatedly asked for his treatment to be withheld and to be allowed to die. He was overridden. He recovered. He went to law school, where he continued to try to take his life and eventually became a lawyer who, while saying that he appreciated his life, still argues that it would have been more right to withhold his intervention and allow him to die back then.

Then there is Karen Ann Quinlan , a case in 1976, a young woman who, through mixing drugs, arrived at a cardiac arrest and was resuscitated and maintained in a persistent vegetative state until finally the Supreme Court said that a surrogate, the parents, could withdraw life-sustaining treatment.

So these prompted a great deal of discussion and debate, and shortly after that, the 1983 President's Council report on decisions to forego life-sustaining treatment was published.

This is a very brief summary of a report that you know perhaps better than I, but I wanted to highlight some features, all of which are in its own summary of itself because we all return to this at the very end.

The report definitely and firmly and persuasively put the individual's voluntary choice at the center, consistent with that visual that we've just seen. It did also outline some constraints on the individual's voluntary choice, including the physician's conscience, possible resource constraints, and the need to never abandon a person who has declined life-sustaining intervention.

It had what in retrospect was a heroic and almost beautiful attempt to summarize palliative care in one of its appendices. This was, looking back at it, a very touching synopsis of guidance to physicians as to how to provide care to patients who were declining life-sustaining treatment.

It was also an endorsement of the use of surrogates, proxy decision-makers for those who could not make their own decisions, and it endorsed the use of best-interest standards. As we've seen from the prior discussion and slide on the relationship, maybe those standards are by now a little dated. That is what the '83 Council report recommended.

It did also endorse advanced-care planning but clearly as a second best, saying that the surrogate has a better capacity to decide than advance directives. And, finally, it endorsed the use of a do-not-resuscitate order and indicated the importance of physicians assessing every hospitalized patient for what their status with respect to resuscitation should be.

And each one of these points except the first one has an update that I think the current President's Council may want to visit as we go forward. So that's the summary that I'd like to leave in your heads for just a moment until the end of my presentation.

So in the meantime the conflicts that fueled the discussion continued. We had the case of Cruzan . We had the case of Martin . And basically those cases were testing out whether states could limit the right of a surrogate to withdraw treatment, and, by and large, the ability to withdraw life support was upheld. But then we had an interesting turn of events. In '95 we had the case of Gilgunn and Wanglie, and then later on we had Schiavo - Terry Schiavo , and we were being presented with a situation where, although the Schiavo family was in disagreement amongst itself, basically the families were demanding continued life support.

So these were the cases that continued to fuel our discussions, and, in addition, for those of us who are in clinical practice, they were the day in, day out, every hospital, every clinician was confronted with a case of a similar kind that had perhaps less limelight but no less human suffering, no less tragedy, and no less sense of dilemma for all who were involved.

And I say "all" advisedly. It's not just the patient. In fact, the patient in a vegetative state was probably suffering the least. It was the family members, it was the people providing care, the nurses, doctors, and so on, as well as the institutions around them that were suffering.

So when all was said and done, I think that the grand realization that was staring the clinicians starkly between the eyes was that whereas those of us who had been raised on a diet of scientific enthusiasm, that we could save lives and stamp out disease, had to confront the possibility that excessive intervention is a real problem, but then also confronted with the possibility that too little intervention could be a real problem, as well.

So we were confronted with this very basic understanding that we somehow felt we had been freed from for a short while that both excessive and insufficient intervention are wrong. And so there we were in that Twilight Zone between life and death trying to navigate these narrow straits with appropriate care for the individuals.

And so with that backdrop it became very important to try and understand what is futility, when is something futile, and when is it not. And people valiantly came up with a variety of definitions. And they went something as follows.

There was the professional definition. And, in essence, the idea with the professional definition is that the medical profession can create standards as to what is futile and what is not because the medical profession knows what works and what doesn't work. Now, unfortunately, professionals didn't agree. We varied amongst ourselves as to what might constitute futility, and so that definition did not carry very much weight.

Nancy Jecker and her colleague, Schneiderman, came up with a numerical definition. Basically the idea there was that any intervention that has not worked for the previous 100 attempts can be considered futile. Again, that turned out to be not terribly helpful because we differed on the ways in which an intervention could be considered to have counted as one of the previous 100, and many of the interventions hadn't even been tried 100 times before. So it turned out just to be not terribly practical and therefore not very helpful.

Then the reasonable person standard was the idea that we could define what futility is by trying to put a hypothetical reasonable person into a scenario and decide whether that person would want the intervention or consider it futile. Now, the reasonable person, of course, is a hypothetical person, and in reality, individuals vary too much, and so that didn't hold very much weight for us, either.

There was some very worthy attempts to reach social consensus as to what is considered futility. Indeed, there was an attempt in Puget Sound to list interventions that should be reimbursed, and out of that is a somewhat implicit notion as to what would be considered not worth the social resources and therefore, perhaps, futile. That seemed to be impracticable. The process was very labor-intensive, fraught was disagreement, and didn't seem to help very much at the bedside in the end, either.

So what we ended up with was this patient-centered goal-guided — and we'll talk a lot more about goal-guided in a moment — definition of what constitutes futility. And, again, here's the visual. This is the decision-making model, and it was applied to futility, as well.

So at the end of the day, at the end of the debate about futility, we had people saying that the whole notion of futility is itself futile. It hasn't helped us. And a framework of understanding what this debate was really about was a psychological one, a relational one, in which it was discerned that the problem was that with these situations where people were sustained in a Twilight Zone there was an incursion on other people.

No patient goes into a state as dire as that without drawing people with him or her. Family members were drawn in. Physicians were drawn in. Nurses were drawn in. Social workers were drawn in. Lawyers were drawn in. The community was drawn in. This was making an incursion on other people, as well. It was also making an incursion on other values.

So the value of sustaining life was the value that was being honored where life support was continued. But the values of other things was being incurred on, and those values might be other people's ability to continue with life, a use of resources for other things, quality of life over quantity of life. Those were all values that people cared about, as well. Incursion on others' resources was another source of frustration, and incursion beyond patient boundaries that may have been unwelcome was another source of frustration.

So that's a story of where we came from in the futility debate, and where do we go, then, from here? And in this section I'd like to cover the following three topics: The notion that there might be such a thing as a differential diagnosis of futility claims was a very powerful one, and we'll go into that; the notion that we may be able to have approaches to it, therefore, that fall within the medical paradigm turned out to be quite powerful; and, thirdly, I'd like to spend a moment talking about whether there are persisting dilemmas and whether we can resolve them. I'd like to put before you the notion that, indeed, we can, and perhaps with the help of the President's Council going forward.

So first of all, what prompts assertions of futility? A wonderful, I think, definitive article by Susan Dorr Goold and her colleagues in JAMA that I have provided and I think is in your packets indicated persuasively that the vast majority of cases that were termed futile could be understood within the context of a differential diagnosis no longer than three long.

There were family features that were often driving futility cases, and those family features involved things like difficulty understanding or gathering appropriate information. So there were misunderstandings involved, things like guilt within the family, things like difficulty letting go, and things like different expectations about what was possible. Those were some of the family features that could drive futility cases.

Then she pointed out that this is not just about family. This is also about physicians. This was a physician group writing, and so pointing the focus on ourselves was a very important step forward and that some of the features that she pointed out is that we are not comfortable with the prognostic uncertainty at the Twilight Zone of life, and that's our issue; that we have our own attitudes and expectations about what should happen that we impose, and that's our issue; that we have inadequate skills or we had at the time inadequate skills for dealing with such cases, and those were our issues, as well, to say nothing of the stress of our day-to-day professional lives.

And then, too, she pointed out that there were social and organizational features such as resources, some of the way in which hospitals are set up, lack of visiting hours, and arrogation of decision-making that left out people with a great deal of interest in the decision-making, legal fears, things like that, which kind of set us up for controversial cases that became dubbed futility cases.

And I think a broader differential diagnosis really is consistent with that. I think we can see that for the most part futility cases can be considered either cases where there is a mismatch of expectations — perhaps personal adjustment is not complete, the difficult realities of our mortality and our disability, perhaps information. Perhaps it's cultural conflict. But one way or another there's a different set of expectations.

Or there are relationship problems. Communication is inadequate. The respect that we offer one another was perhaps inadequate or inadequately conveyed so that the trustworthiness was at stake.

But, too, in addition to that, there were genuine dilemmas — rare, but there were some where there were genuine differences in beliefs, genuine differences in values, and genuine differences in approaches to the phenomena of life, including perhaps whether or not miracles exist.

So how do we approach futility cases? With the understanding that if we can approach it with a differential diagnosis and we can apply, in the same way that we do with all of medicine, a preventative approach, we have suddenly a whole lot more power and capacity. And I would like to emphasize, especially for the President's Council going forward, that this preventative approach is absolutely characteristic of medicine, and I would suggest — I would hazard a guess that perhaps more than 80 percent of the success of medicine is attributable to preventive medicine.

So, too, here in the cases of futility, if we can predict what kind of situations come up, we can see what's coming down the pike, we can prevent most of them and manage others of them, we are going to be in a much, much better state.

So with an emphasis on communication we began to teach our colleagues about the term "realistic hope," and we began to experience and try and provide for ourselves and our patients and our community members something that I like to call existential maturity, an ability to live with the nature of our mortal condition that is mature as opposed to immature.

And advanced-care planning, including the use of thresholds — I'll spend a little bit longer on that in a moment — is one of those mechanisms. These are all preventive medicine mechanisms.

For those cases where there is, indeed, a genuine dilemma that is irresolvable, the Council on Ethical and Judicial Affairs came up with a report that's also included in your packet that provides a due process approach to managing these situations.

And basically the steps involved in this were to communicate ahead of time, to deliberate ahead of time so that all possible conflicts could be preempted. Then joint decision-making was encouraged as far as possible, and negotiation was encouraged, including with consultants as fitting.

If that's not possible, then the Ethics Committee was recommended. And, finally, if the Ethics Committee was not able to produce a resolution that all parties were comfortable with, then it recommended transfer of care, either transfer of care to a different attending physician within an institution, or if that's not possible, transfer to another institution.

Recognizing that that's not always possible, it did bite the bullet and ultimately said that if all of these features have been tried and it's still a question of whether or not life support can be withdrawn, it is permissible to withdraw life support. So that's the opinion of the Council on Ethical and Judicial Affairs in '96.

Okay, with that in mind, I'd like to spend just a moment longer talking about some of the other preventive mechanisms. We'll spend less time than more on this, not because it's unimportant but because I think by now it's very well promulgated. Teaching our colleagues how to communicate effectively has been clearly given a great deal of attention and clearly triggered, I think, by the seminal work by Susan Goold and others.

Robert Buckman has put out a six-step protocol for communicating effectively, and this is the framework that is variously adapted for various different settings now to help us communicate so that our patients — and ourselves if we're the patients — understand the necessary information in order to be a member of the participatory decision-making team making good decisions.

What I'd like spend a little bit more time on is advanced-care planning, or perhaps this title should have said "Advance Directives." Advanced-care planning is a discussion process, and I think that's motherhood and apple pie, and no one believes that that's a bad thing. Everyone believes that that's a good thing.

But the question of directives has been more controversial, and I'd like to make a case for an enhanced understanding and an enhanced role for directives, recognizing, of course, that a set of directives is not a panacea.

But the main problem with advance directives is that they are time bound. And I'd like to make the argument that being time bound is an intrinsic limitation but not sufficient to undermine the merit of advance directives. I would like to indicate that the data that we've gathered over the years make it clear that these commitments work at least as well as other future-oriented commitments.

One example is marriage. Not all marriages last, but we honor the commitment of marriage. And to perhaps make it more vivid, getting on a plane is also a time-bound commitment. In this era we all know that when we get on a plane, if a disaster happens in the middle of the air, we live with our commitment, and we die with our commitment. So I think that we should not cast out the notion of advance directives because of the nature of our existence in a time-bound reality.

The notion of advanced-care planning is a discussive process that aids in our ability to come to terms with and understand our mortality, our need for working in a team of decision-makers, and our need for communication is also a well-proven case and one that we need to give additional honor to.

What I'd like to spend just a little bit longer on now is an update for the Council on the use of personal thresholds and goals that are durable and interpretable in the medical context.

So here's an example of one way in which a person is being asked to think about what their goals for treatment would be. There's a well-defined situation, succinctly stated, and then there are goals that the person can select or further specify.

And in a study by Gary Fischer in '97, it was empirically determined that these goals are not only durable over time but that they can be accurately used to predict intervention preferences. Now, this is a very important concept because of the way in which it will allow us to relate proxy roles with directive roles.

So if a person can articulate their goals, they are durable over time, and they are consistent with the specific treatment choices that they make. And here's a worksheet that shows several different scenarios. It's a worksheet. It's got a pencil with an eraser at the top of it showing that it's a worksheet, and this particular worksheet has been filled out with two different scenarios with two different goals, indicating that people do change from one goal to another, depending on the circumstance. And then below are the different interventions, and this person has, as yet, not filled those out. But in the next depiction the person has filled them out, and, indeed, they are consistent. But, furthermore, it's quite clear that there's a threshold somewhere in the middle of that set of three scenarios.

Not only have the check marks moved from one to another for the specific interventions, there is a specific set of instructions added to one situation in the middle, and that person has indicated that that person's threshold is right there in situation E. That's where there's ambivalence. That's where there's a shift from one set of preferences but not yet the goal to another, and that's where specific modifiers are being put in place.

Empirically, the vast majority of people do reveal a threshold when they're given a set of scenarios to look at, and those thresholds and those goals, then, provide us with a sort of set of ordinates, kind of like the latitude and longitude in a global position, that allow us to understand something fundamental about the values and wishes of a person.

So I'd like to put that forward, then, as an argument that proxies and directives need to be understood as two sides of one coin. Proxies are enhanced by having directives, and directives are enhanced by having proxies.

We need to keep in mind that a proxy has a very, very burdensome role and is greatly assisted by having directives to help understand that person's narrative role, help understand that person's values and wishes.

And, similarly, the directive that sits there as a piece of paper, as an inanimate object, is incapable of doing the fundamentally important task of engaging in deliberation with the physicians and other members of the team who are making decisions. The two must go together is the point that I would urge upon the Council.

One way in which we see that this advanced-care planning discussion has moved forward is also in the area of the do-not-resuscitate order. Again, to remind you, the Council report of '83 focused on the do-not-resuscitate order.

I'd like to point out that empirically, the decisions that people make about a resuscitation order are the most unstable of all decisions made about life-sustaining treatment. And thinking about it, we can understand why. Personally, if I were asked if I wanted to be saved at the point of falling off the edge of a cliff, I would of course say yes. But if then I go back and think about the context of that decision and I realize that all kinds of other things are pertinent, I might return to my earlier decision of not wanting resuscitation.

So we can understand, I think, that we ask people a very unfair thing when we ask them to make decisions about resuscitation that are isolated from the full context of their healthcare. And, indeed, I personally teach physicians that whenever they see a DNR order that is isolated from other life-sustaining orders on a medical record, that is a flag for lack of having a palliative care plan. That is a flag for suboptimal quality of treatment and care.

An attempt to move us out of that quandary was a wonderful one by a group in Seattle . They proposed the physicians' orders for life-sustaining treatment, which is basically a bundle of key life-sustaining decisions. And the notion there is that one physician can make a POLST form, and then that POLST form, with suitable state sanction, can move with the patient and be considered valid and authentic even as they move from one place to another. So both it prevents the isolated DNR order and it overcomes some of the problem of discontinuity of care.

That POLST form has been advanced on by others. We call it a medical orders for life-sustaining treatment, or MOLST, form. And still more people are working on a palliative care pack or a bundle of seminal issues in key domains that need to be addressed for all patients.

The overall theme of this slide, though, is that the narrow focus on the DNR order is now out of date and we need to move forward to something that is a better preventive measure for futility cases.

So with that in mind, let's examine for a moment whether there are persisting dilemmas, and I'm going to list three. One may be the question of food and water — is it medical or is it ordinary? I think there's considerable consensus that both food and water become medically contraindicated for many patients during the last stages of their life.

And as this emerging consensus became widespread, all of us were a little surprised when the Pope's encyclical on the subject indicated an imperative to use food and water for comfort even in the persistent vegetative state.

However, the Pope's encyclical, I'd like to argue, did not undermine in any way the recognition that it's medically contraindicated in last stages for many people, nor did it undermine the consensus that incursion past a person's boundaries without consent is a violation.

So just to reinforce, medical contraindications to food and fluid are for the following reasons: Toward the end of life there is very often an extravasation, a leaking of fluid from the blood vessels in the lungs leading to fluid on the lungs, which leads to an extremely distressing inability to breathe.

It also is the same phenomenon in the periphery of the body, so that leakage of fluid into the tissues leads to swelling that can cause a breakdown in the skin and wounds that are very painful. So both of those clearly do not aid the comfort of a person near the end of life. There's also often nausea and vomiting, and there can be gastrointestinal paralysis and blockage, which makes food and fluid through the GI tract contraindicated.

Here's an excerpt from the encyclical, and I don't expect you to read this by any means in any detail. I just wanted to emphasize that at the top with the first question, "Is the administration of food and water to a patient in a vegetative state obligatory" includes the exception "when they cannot be assimilated by the patient's body or cannot be administered without causing significant physical discomfort."

And, similarly, in the second question there are these important writers that I think allow us to find a way that this, too, can be accommodated within the emerging consensus.

A word, too, on these personal boundaries. When a percutaneous endogastric tube or PEG tube or a tube is inserted past the body boundary directly into the gastrointestinal tract or when a central line is inserted into the blood vessels or even when a person with Alzheimer's is spoon-fed and they bite down on the spoon and don't let you put the food into their mouth, those are all transgressions of bodily boundaries, and if they're done without consent, they remain a violation.

So we have esteemed colleagues such as Kevin O'Rourke publishing as recently as this year on the subject, and I think that we should be optimistic that these issues of food and water are well on their way to being resolved.

Another persisting dilemma of whether a person changes who they are — and I'd like here to note that Rebecca Dresser is the person who really pioneered the philosophy and thinking behind all of this. What happens when a person is so changed by a mental illness such as Alzheimer's or by stroke that they are indeed no longer the person that they used to be?

What happens, for example — and I call it the sunset syndrome — when a person was in passionate belief that when they got to a certain point of advance dementia they wanted to be allowed the first possible natural exit from life but then discovered that they were quite happy to enjoy the sunset sitting on the balcony of the nursing home and that life did, indeed, have meaning? What happens then? What happens when Dax Cowart says, "Yes, I'm happy to be alive, but I should have been allowed to die back then because I wanted it and it was my right"?

I'd like to suggest that Dax Cowart's position can be internally coherent and that what we need to do — and I think this is consistent with Rebecca Dresser 's position — is honor the most recent iteration of the person, and the proxy is there to use substituted judgment, if necessary.

But nonetheless, very often we have to do the best we can, and we do want to make a construction for ourselves and for those for whom we're beholden of our narrative that takes into account the whole narrative and allows that we do live in a time-bound existence in which time-bound commitments is the best we can do. And so that there is a very real role for both the advance directive and the proxy that overrides them by use of substituted judgment, if necessary.

Finally, is there a slippery slope, and do we have to worry about futility with respect to this question? I think the worry is that a futility discussion might allow philosophical positions that would perhaps devalue life if it went in one direction or perhaps foster a kind of anticipatory desperation for those who have great worries about living in a state worse than death.

So at the end of the day I think that there may well be slipperiness, and there is always slipperiness, but it's not at all clear whether assisted suicide and euthanasia would be more likely or less, depending on how the futility debate is handled.

Rather, I think the answer to this question is palliative care's approach to physician-assisted suicide, which acknowledges that most requests come from nonphysical suffering, from psychological suffering and social suffering, and provides a stepwise, nonjudgmental approach to treating the root cause of suffering and that that approach can take care of the vast, vast majority of requests.

And palliative sedation, with careful adherence to the doctrine of double effect, is also a possibility, if necessary, especially for physical suffering. So I think that situation is also ready for update and close to full resolution.

So in closing, I would like to say a few words about the path forward and leave the rest, obviously, to the President's Council. What is not futile about futile? What has been productive about this debate? And I would think that we can agree a great deal has been productive.

One is the understanding that our goal is to find a very specific individual goal for all people for whom we care about their medical care. So a person-centered approach to goals is one important piece. Now, please note here that what we are saying, and it's implicit in this understanding, that we are not arguing about the preciousness of life, sanctity of life in some people's terminology. We can all agree about the preciousness of human life.

What we are talking about is the quality with which we accept our mortal condition. And we do not argue about our mortal condition. We're talking only about the quality of the way in which we approach it.

I don't think anyone from any religious tradition or from a nonreligious tradition would imagine that their life would be judged for its worth on whether they lived an extra day, an extra week, or an extra month or not, but on the way in which they handled the mortality that we have, complete with life, and complete with the necessary condition of letting go at our end of days.

So with that in mind, we can say that our medical standards are now new and improved. We have made progress and that we can also continue the progress we've made culturally as a society, and we can also look at our policy and law, most of which I'll leave for my next colleague, who will be speaking more about it.

So in finding a care goal for all people, I think that we are looking for something that translates differently for different people. Some people call it a state of holiness between life and death, others a state of settledness, peace, love, bliss.

Wherever we come from, I think we can understand that we're looking for the silver linings that come with our mortality. We're looking for a kind of transitional readiness, a kind of ability to complete the tasks of the dying so that we can become part of the continuum of the mortal multi-generational human condition, walking offstage in a suitable fashion when our time comes.

The medical standards that we're looking for are those that are free of unwelcome incursions onto other people, onto their resources, onto their values, and past people's boundaries, all of which can be done without ever abandoning a person. And we can do this by promoting palliative and hospice care even more than it's already promoted, and we're doing well in this.

We can do this by promoting preventive practices for futility where goals are continuously elicited and updated as part of routine medical care. Communication skills are considered essential, and advanced-care planning using proxies and directives is also part of routine care where conflict resolution and other parts of due process are also routinely institutionalized.

Our cultural growth is perhaps beyond the call of the President's Council, but I think that we can look for continued growth beyond our social death denial that we have lived in and struggled in, in the last 15 years. And by promoting more exposure to the process of dying, we can achieve a kind of social existential maturity that will be very helpful.

It was very striking. As I came in yesterday and went past the ceremonies marking 9/11 and reflected on our fall from power and our fall from prosperity and, most importantly, our fall from a sense of immunity, I think that we can find a silver lining in 9/11 which is our ability, perhaps through the media, perhaps through arts, to embrace our existential maturity.

So as we consider policy, I would promote the idea that the President's Commission thinks carefully about how to promote palliative and hospice care widely, to promote an ideal form of advanced-care planning that is updated from its previous iteration, that we should refine state laws so that not only are there proxy laws in every state but laws that enshrine the ability to have a combination of proxy and directives, and that the POLSTform is indeed legally honored in all states. Currently it's only honored in some and with the strengthening of due process at every hospital level.

So this is a summary of the recommendations. It's a repetition of what I have said before, and it's on your printed handout, so I won't go through it again. But I would like in closing, finally, with my last slide to go back to the '83 President Council 's report. And here I've highlighted in color some of the things that I think need attention and updating to go forward.

The individual's voluntary choice still remains central, but the constraints now need updating. It goes beyond physician conscience. It goes beyond resource constraints, and it goes beyond the need to not abandon, to all of the things that we have talked about, the need for palliative care in its fullness to be promoted, not as an almost now quaint and touching appendix that summarize the essence of it, but in its fullness as a full discipline as something that every member of the American society should be able to access.

Surrogates should still be endorsed, but they should use the standards that now reflect our more sophisticated understanding, not only best interest — best interest when it is relevant but substituted judgment more often and collaborative with directives not as a second best but as a co-equal.

The DNR assessment for all hospitalized patients needs to be expanded to a full bundle of palliative care considerations. So with those thoughts, I thank you for taking the time and listening to me, and I would like to close here. These are references for the work that I have cited in my comments.

CHAIRMAN PELLEGRINO: Thank you very much, . Dr. Ben Carson , member of the Council, has asked to open the discussion.

DR. CARSON: Well, thank you, , for that very thorough and thoughtful presentation. I, looking at the subject, thought I would have a lot of things that I would disagree with, but I really don't because it was really done in a remarkably thorough way.

I would say that a lot of these issues are a little more difficult to grapple with than perhaps they seem. And a lot of it has to do with our lack of complete knowledge as physicians.

I remember a few months ago a baby with Pfeiffer's 2 syndrome, and all the neonatologists and geneticists said, "They all die. There's really no point in doing anything." And I got into a fairly substantial argument, to put it mildly, and I said, "The reason they die is because you don't do anything. Maybe you should do something. Maybe we should be more aggressive." And after some significant discussions, we proceeded. We've had to do so far five operations on that baby, but the baby is thriving.

And a lot of times I think we have to put these things into context of our increasing knowledge and not allow ourselves to sort of stop and say, "Well, this is how it is and this is how it has been," recognizing that those things are going to continue to change.

As far as the proxies and advance directives are concerned, I'm a big advocate of those because we get into extremely complex situations. But one of the problems, of course, is that they don't take everything into account.

And perhaps a very well-known case involves the Bijani twins, the Iranian young women who were joined at the head. Their desire was to be separated. And I was involved in that case. And after doing the initial operations to create new vascular channels, which clotted off, it became very clear that they had another way of draining their brains because their brains remained healthy.

And I and a couple of other people felt that it was prudent that we stop the operation at that point, figure out what was going on because we had a pretty good chance. Well, they had a prearrangement that we would not stop. They would either be separated, or they would die.

So we went out to talk to the proxy who said, "I'm sorry, I can't change that," when, in fact, the clinical situation had dramatically changed. And that's a situation where sometimes their advance directives and proxies don't work, and we have to certainly integrate into that a mechanism to allow for the knowledge and skill of the medical profession to make adequate changes. And it's a very difficult thing to account for.

But in the long run, pragmatism I think is the thing that helps us resolve these kind of issues. We just have to look at them in a logical way. We have to integrate compassion into that. And I think utilizing the principles that you have articulated, we'll be well on the way.

CHAIRMAN PELLEGRINO: Thank you very much, Dr. Carson . Linda ?

PROF. EMANUEL: Thank you for your comments. I would just want to make one commentary on your comments with respect to the Bijani twins and the intraoperative decision that you were faced with. There's a sense of regret in me that it wasn't possible to have explained to the proxy that the role of the proxy is, indeed, to not apply directives rigidly but to apply them as one source of understanding as to what should happen in real time and to recognize that at some point substituted judgment does kick in and that the most important time when substituted judgment kicks in is when the reality has changed.

The person has changed, in the case of Dax Cowart, but the medical situation in the case of the Bijani twins. So had that been something they had understood ahead of time, you would have had a better deliberative partner.

CHAIRMAN PELLEGRINO: Thank you. Rebecca ?

PROF. DRESSER: As usual, you've given us a very clear, thorough presentation and a good overview of kind of the foundation situation for futility as an issue. We actually put out a report about three years ago called "Taking Care: Ethical Caregiving in Our Aging Society," and we kind of go through a lot of the general issues about directives and decision-making and so forth. And I'd be interested in your reaction to that part.

So I guess I'd like to get you to focus a little bit more on the futility situation because I understand that that's what our next report or White Paper will focus on, is that right?

So I wondered if you could talk about two things. One is what about the advance directive that says, "I believe decisions about my life are in the hands of God or whoever, and I want the doctors to do everything"? So following the directive would require doing some things that many professionals might disagree with.

And, secondly, it might be useful for you to maybe — if you have a case example of a futility case that you've been involved in, sort of how you worked through it. I think that would help educate us more specifically about this particular kind of dilemma.

PROF. EMANUEL: Thank you, Rebecca . As always, you go to the point of urgent need. And this is no exception. So when a person has an advance directive that says, "My life is in the hands of God, and that means do everything," you've already gone one step forward because you know a little bit about what that person means when they say, "My life is in the hands of God" because two people can say that same thing, and it might mean something very different to them. So you already know that that means to them that they want everything done.

The specific case that immediately comes to mind that is the second part of what you asked me to go through is not dissimilar, so I'm going to kind of fuse them. The specific case I was involved with that comes to mind was a young man who was in the terminal stages of HIV/AIDS, had had cerebral involvement, and was unconscious on a ventilator.

This was at a fairly early stage in the whole AIDS epidemic, and this was a homosexual young man with a stable partner, a sister who had previously died of HIV/AIDS from intravenous drug use, and a mother who was involved and devoted, but not very stable socially with respect to her son.

And the patient had had two different advance directives, and they didn't agree. And one advance directive said that he wanted everything done, and then the other one said that he wanted something short of everything done. The proxy did not understand that that's what the patient wanted.

The proxy understood that the proxy was doing the bidding of his mother, who wanted everything done. The proxy understood that, like his sister, he really would have wanted to have life support withdrawn. So in the context of that disagreement we engaged the discussion of what does it mean to do everything.

So the way in which that discussion went was initially there was a discussion about — and this is the good part. The rest of it didn't happen so well in that we had to go to the Due Process Ethics Committee portion. But that was part of it, and it went, and so perhaps it went well in that regard.

But the discussion part that was optimistic from my point of view is that we were able to say, "I fully respect your belief. It may not be all of our beliefs, but we fully respect it. We fully respect the sense that doing everything is part of honoring your religious relationship to God. We'd like to understand exactly what that means, because we also understand when you say `doing everything' that you don't mean doing things that are cruel and inhumane."

What would it mean to have gone beyond doing something desirable to doing something that's abusive? And so we were able to get some thresholds there that eventually brought consensus.

Now, we didn't reach consensus at that point, but eventually when we had gone to the Ethics Committee and there was discussion between the head of the Ethics Committee and the proxy and the mother, there was agreement that what they meant by doing everything short of being abusive involved not maintaining the respirator. So eventually the respirator was withdrawn, and he did die. He would have died shortly, anyway, but perhaps not for quite a while.

CHAIRMAN PELLEGRINO: Thank you very much. Yes , Ben ?

DR. CARSON: Two weeks ago I had a situation where there was a newborn baby who had about two dozen brain abscesses, MRSA. So this was not a good situation. And we all knew what the outcome of that situation was. But the parents said, "Well, there are miracles, right? God does work miracles. So we need to do everything. We need to drain all the abscesses. We need to put tubes into the ventricles," et cetera.

And I resolved that issue with them by simply saying, "Does God need us to do a miracle? He doesn't really need us, does he?" And as they thought more about it they said, "No, I guess not." And they backed off of that. So even in those situations I think sometimes you can reason with them if they truly do have a good concept of God.

CHAIRMAN PELLEGRINO: The time is a little short, so I'm going to do the following: I have three Council members who wish to comment, and I will ask them to do so, and then you can respond as you hear their questions. First to Dr. Meilaender and Dr. Landry and then Dr. Gómez-Lobo .

PROF. MEILAENDER: Yes. Let me just make a couple of comments, and you can respond to them or not as you wish. They mainly go toward suggesting that I wouldn't be as optimistic as your presentation couched it. I did want to note, as Rebecca did, that the history of national reflection on these matters did not end in 1983. And we, in that "Taking Care" report, had a somewhat different slant on the usefulness of advance directives, and I think it needs more attention and maybe would undercut the optimism a little bit.

I just wanted to point to a few things. What we've got is a process solution that I think doesn't finely overcome every substantive question, and I just note a few. I think you're way too optimistic that you've got a reading of that Papal allocution that will work. And I'm not a Roman Catholic, but, yes, the exception clause recognizes what I think one should recognize, that there may be moments near the very end of life when there's good reason to withdraw them.

But the kinds of cases that are really under controversy that exception clause is not going to solve at all. So I just don't see the optimism there. I think that buried deep in this argument and almost impossible to sort out is a distinction between a treatment that is futile and a life that is thought to be futile. And these get blurred together all sorts of times.

You know, you tell me this treatment is futile, but perhaps, in fact, what somebody thinks is that it's just not much of a life worth sustaining. And that constantly needs clarification, I think, and I just don't know that a process alone — a process of getting an advance directive — solves that.

And then you talked about sort of existential maturity in the face of death and used the phrase "completing the task of dying." I don't actually think that would be a sign of existential maturity, to think that I should complete the task of dying. I think it would be a sign of maturity to regard it always as an enemy, though it may be one that you finally had to admit had defeated you. There's a rather different attitude toward that.

There's just all sorts of important kinds of philosophical differences buried here that I just don't finely think a process solution is going to solve, and that's why I'd be a little less optimistic.


DR. LANDRY: I'd also like to echo thanks for a spectacular review. Professor Meilaender anticipated one of my comments, which is that many of the interventions are never futile. You know, dialysis works. Unless you've exhausted vascular access and the system is clotting very frequently and you really can't get a treatment completed, dialysis will work, and fluid will be removed, solids will be cleared.

The overall condition of the patient, however, will not change, and if death is imminent, that will not be altered. But the term futility is thrown out there, and it, strictly speaking, is not a futile intervention. Maybe the goal is futile, the overall objective is futile.

The other comment I have is the issue of psychiatric illness and depression as coloring the patient's perceptions. My experience caring for — I'm basically a basic scientist, but my clinical outlet is ICU nephrology. And in 20 years' experience, the role of depression coloring patients' desires and perceptions can't be underestimated.


PROF. GÓMEZ-LOBO:I really have an information question and perhaps a comment. I'm looking at your slide that has the text of the Congregation for the Doctrine of the Faith. I don't believe that's an encyclical. I think it's called a dubitum. A question was asked, and it was responded.

And my very narrow question is whether a patient in a vegetative state can feel discomfort or whether a patient in that condition can suffer in a way that a different patient would suffer in the case of starvation and dehydration. So that's a very narrow medical question.

The broader question I think coincides to a great extent with Gil 's worries. But my sense would be to talk about futility of a treatment towards a specific medical goal, and then I wouldn't talk about the futility of the life but perhaps the futility of the whole situation.

There was a recent case in Italy . I think the name of the woman was Eluana, who has been 16 years in persistent vegetative state. And do you see any way of dealing with that question? I know it's not a narrow medical question, but it is the question that leads the general public to think of the application of modern technology as leading to situations that have, I would say, a coloring of futility in them. What's the sense of this?


PROF. EMANUEL: That's a tall order, Dr. Pellegrino . They're all multi-part questions that are, of course, as profound as the qualifications of the people articulating them, so I'll do my best.

I do absolutely agree that you have picked up on the issues that we've dealt with in the report on aging. I took my cue from what I thought was my mandate to address the '83 report. So my apologies if I misunderstood that.

The point that process will not always overcome a disagreement I think is clearly correct, and I did not mean to sound such a note of optimism that all would be solved and controversies would never come up but rather that many of them now have a very adequate framework for thinking about them, most of them, indeed, and that for the remainder we still have to use due process.

Not everything will be solved, but those things that cannot be solved we do now have a well-articulated due process that if it were well-enshrined in institutions would be the best possible resolution that we can get. So that was my hope for that.

The distinction between whether a treatment is futile, a life is futile, or a situation is futile still seems to me to go backwards into the use of the concept of futile, in a futile way. So although I don't feel that the whole debate on futility was futile, I think it was very productive. I think it's moved us forward.

I do think, along with Susan Dorr Goold, that the concept of futility itself does not do adequate work for us, and that we need to take each situation as it presents itself and go for the differential diagnosis of its root causes, prevent as many root causes as we can, manage those that we can't, and use due process for the remainder.

So whether it's the treatment that's futile or the goal that's futile or the person that's futile or the situation that's futile is to me not the right question. The question is why are people using that word, why are they distraught enough to use that word, and what are those sources of depression.

So we could argue about whether or not assisted suicide is ever moral, and I can guarantee that half of us would find it sometimes moral and half of us would find it never moral. But palliative care has chosen not to engage that debate at all but rather to use a nonjudgmental approach to the root causes of someone being distressed enough to ask for assisted suicide. And I found that very helpful.

I have my own views about assisted suicide, but my views were not helpful. Neither were anyone else's views helpful in the patient/clinician context. And just to illustrate that a little bit more, in one situation where a patient asked for assisted suicide, imagine that I say, "Yes, I agree with that. I think that that's a good idea." That patient would probably feel that I just affirmed that patient's worthlessness, and I would have been way out of my appropriate role.

So what happened if the other way around I say to the patient, "No, no, I never do that. That's immoral"? I will have just made that patient feel morally unworthy. So I would have again stepped outside of my appropriate role as a healer.

So in the same sense that assisted suicide is not helped by the moral debate, as important as it may be in its own right, in the public and medical setting it's not helpful. In the same sense, I would urge on you that trying to figure out whether it's the person, the goal, situation, or the treatment that's futile is not helpful for us.

The question is why is anybody involved in that scenario using the term futility. The term futility is a marker for distress because something has been violated. The person has been violated. The values have been violated. Other people have been violated. Resources have been misused in someone's view. And the question is how to deal with that issue. So that's my hope for the use of the term futile is that it has seen its day.

The question of depression is always there. The question of the psychological state of the person is always there. And I think that we have to use a similar understanding of that in the non-pathological state that we've used for Dax Cowart and for transitions in personhood. So long as it's not a pathological state, then we consider it a form of thinking that we have to respect. If it's in the pathological state, as our colleagues in psychiatry would describe, we try and side on the side of a person's mentation that is healthy. And we try and treat the depression before we honor the directives. So there's nothing new about that position.

And people that persist in a vegetative state, as far as we know, cannot suffer because they're not sentient, but depending on one's definition of suffering, perhaps there can be controversy on that. But I think by definition if it's a true vegetative state and suffering is understood and here in the individual, then the patient is not capable of suffering. Those around that person are capable of suffering, and that's really what the discussion is about.

CHAIRMAN PELLEGRINO: I think we have reached the point of the break. We want to thank you, , very, very much.


CHAIRMAN PELLEGRINO: And we'll revise our schedule and reassemble at 10:45 .

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