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Meeting Transcript
September 12, 2008

Council Members Present

Edmund Pellegrino, M.D., Chairman
Georgetown University

Benjamin S. Carson, Sr., M.D.
Johns Hopkins Medical Institution

Rebecca S. Dresser, J.D.
Washington University School of Law

Nicholas N. Eberstadt, Ph.D.
American Enterprise Institute

Alfonso Gómez-Lobo, Dr.phil.
Georgetown University

William B. Hurlbut, M.D.
Stanford University

Donald W. Landry, M.D., Ph.D.
Columbia University

Peter A. Lawler, Ph.D.
Berry College

Paul McHugh, M.D.
Johns Hopkins Hospital

Gilbert C. Meilaender, Ph.D.
Valparaiso University

Janet D. Rowley, M.D.
The University of Chicago



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 .


CHAIRMAN PELLEGRINO:   Our next speaker on the subject of medical futility, institutional and legislative initiatives is Thaddeus Pope, lawyer and philosopher, J.D., Ph.D., associate professor of law at Widener University Law School. Dr. Pope?

DR. POPE: Good morning. It's quite a privilege to be invited here to address this quite distinguished body and to be among the other quite distinguished speakers. Thank you for inviting me to speak, and it's nice to be back just a few hundred yards where I started the systematic study of ethics, in fact, as a teaching assistant for Prof. Gómez-Lobo.

I cut a few slides out. So on the hard copies that you have, you might have to skip ahead at just a couple of points. I want to proceed in just six steps. I want to first illustrate and define a futility dispute and then, second, identify the causes of futility disputes, and, third, while most are resolved through consensus, there is a significant and growing and subset of disputes that remain intractable. And the focus of my remarks is on those intractable disputes.

Fourth, in response to the intractable disputes, professional medical associations and individual institutions have developed policies on when providers could refuse treatment, but those policies lacked legal backing.

So fifth, many states passed statutes to give that backing, but those statutes were not well drafted and failed to provide safe harbor protection. So across the United States providers are legally chilled from practicing the medicine that they consider appropriate.

And finally, sixth, the one major exception to that is Texas.

So what's a futility dispute? And this is probably superfluous, but just to frame and orient things, this is a relatively high media profile case from Texas. Emilio Lee Gonzales was born generally healthy, but when he was about one year old Emilio was diagnosed with Leigh 's disease, a neuron metabolic disorder that affects the nervous system.

In December 2006 Emilio was admitted to the PICU at Children's Hospital of Austin, where his neurological status continued to worsen as his brain atrophied. He was dependent upon a mechanical ventilator, nasojejunal tube. He was semicomatose. He could not empty his bladder. He was having frequent seizures, and providers had great difficulty keeping his lungs inflated.

Emilio's heath care providers determined that his condition was irreversible and that the continued treatment “would only serve to prolong his suffering without the possibility of cure.” They felt that “the burdens associated with his current care plan outweigh any benefit Emilio might have been receiving” and that “his aggressive treatment plan amounted to a nearly constant assault on Emilio's fundamental human dignity.” But Emilio's mother, Catarina, refused to consent to the withdrawal of life-sustaining treatment. She insisted that Emilio's provider sustain him until Jesus takes him. During the winter of 2007 the care team and Catarina had multiple conferences to discuss his condition and his treatment plan, but they could not reach any consensus.

This is a futility dispute where the patient, whether herself or, more often, through an advance directive or through some form of substitute decision maker, wants to continue aggressive life-sustaining medical treatment. But the provider, on the other hand, thinks that that is inappropriate and does not want to give it. Now, that model presumes a certain unity among surrogates and a certain unity among providers. And, of course, certainly two daughters may disagree or two physicians may disagree, but the paradigm futility dispute is between the surrogate on the one hand and the provider on the other hand, and that's what I'm going to focus on.

I'm not going to address macro issues about how Medicare should make coverage determinations. I'll leave that to the Congressional Budget Office and ARC. In last month's archives, a surgery survey showed that 44.3 percent of physicians­ — of professionals — thought that patients have the right to demand care that their doctors think will not help. Many argue that that figure — 44 percent — is too high and that more physicians should cancel their subscription to the technological imperative.

I'm not focusing — let's go back to the same survey. I'm not focusing on whether physicians give too much inappropriate care. I'm focusing on the spread here. There are many more patients and surrogates who think that they have a right to demand inappropriate care than there are physicians who think that they have that right. And just another question from the same survey. Even where doctors believe there is not hope of recovery, 21 percent of people think that all efforts should continue indefinitely.

So to understand the causes of conflict we have to look at both the reasons surrogates insist on continued life-sustaining treatment and the reason that providers resist those demands. Religion is a big one. In many intractable disputes, including some of the most famous — Baby K and Emilio Gonzales — surrogates request continued treatment because it's called for in their religious or cultural tradition. Only God can give and take life. Another survey showed that a lot of people, 60 percent, believe in miracles, believe in divine intervention.

In addition to religion, in this study in Critical Care Medicine nearly 90 percent of participants expressed doubt in physicians' ability to prognosticate. With greater access to the information — on the Internet, for example — people have a greater awareness of uncertainty in medicine, and they're more confident in opposing health care providers. There's a substantial body of evidence that shows African Americans are more likely to request unconditional prolongation of life-sustaining medical treatment, less likely to agree with the health care recommendation to stop.

And today, where the incentives of managed care are well known, even non-minorities are distrustful. Grief, guilt, family dynamics, some of the other reasons that Prof. Emanuel had referred to. And it's easy for surrogates to act on all these reasons because the costs of their decisions are externalized largely to the payers and to the nursing staff.

Now, conflict requires two parties, so here it's not just that surrogates are more likely to insist on continued treatment, but it's also increasingly likely that providers will resist. And a key reason is they want to prevent a patient's suffering. They want to­­ — and Prof. Curlin really got into this yesterday — they want to preserve the integrity of the medical profession. They also want to prevent moral distress. Providing futile care is the highest and most significant source of moral distress among nurses. Providers want to be good stewards of health care resources.

And finally, providers want to honor patient wishes. Most futility disputes are between a provider and a surrogate, not the patient him or herself. But surrogates are often wrong about what patients would want. Therefore, to resist the surrogate's decision may actually promote, not thwart, the patient's preferences and the patient's interests. So that's the causes.

Now, the good news is that most futility disputes are resolved informally through good communication and mediation. Consensus is reached more than 90 percent of the time, but there's this core subset of disputes that remain intractable. In this study [referencing slide] four percent, two percent, seven percent, two percent. Now this range, this rate of intractability, will probably decrease, will probably shrink with better end-of-life communication, but it won't be eliminated. So there's always this range­ — even though we can achieve consensus most of the time, there's always this subset of intractable disputes.

So professional medical associations and individual institutions developed policies to address how to resolve the intractable disputes. And there's a whole bunch of them, but obviously for the sake of time I have to focus on just one, and I'll focus, as Prof. Emanuel, on the AMA's. A little over ten years ago the AMA recommended that all health care facilities adopt a futility policy, and it promulgated for them a model policy, a seven-step approach. The first five of seven steps were all directed at what lawyers refer to as internal dispute resolution, trying to resolve things informally and internally using deliberation, negotiation, communication. And if the care team can't do it themselves, then in Step 3 you bring in the assistance of consultants, bioethics mediators, social workers. If that doesn't work, even Step 4: use the ethics committee.

But in the intractable disputes, none of the first four steps work, and so you go to Step 6: try to transfer the patient to another institution that is willing to provide the requested treatment. If you can't find a willing provider — and you usually cannot, so this is a big contrast to the discussion yesterday in the contraceptive situation where you can usually find somebody else; here, you usually can't make a transfer. Then, the AMA writes, the intervention need not be offered. So for these two percent, four percent, seven percent of intractable cases that can't be resolved with internal mechanisms, the AMA says the provider can just refuse.

But — the very next line — the AMA writes that legal ramifications of this course of action are uncertain. And indeed, by the 1990s many damages had been paid in cases that had been litigated. Now, based on the outcomes of several particularly well-publicized cases and a big pile of medical journal articles, commentators conclude that the courts have almost universally sided with the family and against health care providers. In fact, when you look at the body of litigated cases, providers have won the overwhelming majority of litigated futility cases. But the salience of the reported cases combined with misinformation created a perception of broad liability exposure. Plus, providers aren't just liability averse; they're litigation averse.

This perceived legal risk had a material impact on provider behavior. In 1996 a group of researchers at St. Louis University — “SLU," as they refer to it — surveyed 2,000 large hospitals in the United States. Of 537 respondents, only 29 had futility policies. Moreover, most of these 29 envisioned primarily a consensus-building approach. So almost none included the AMA's seventh step.

So providers give in. They don't want to, but they do. In 1976, providers were reluctant to withdraw life-sustaining treatment with consent, with the authorized consent, because they didn't have clear legal authorization. Today they're reluctant to withdraw treatment without consent because they lack clear legal authorization for that.

So by the early 1990s protection was on its way, the legal protection that they wanted. Many states enacted statutory safe harbors, which basically — and this is pretty accurate. They basically tell the provider, “Look, if the surrogate is asking you to do something — aggressive life-sustaining treatment that you feel is inappropriate professionally — you don't have to do it. If you can't transfer the patient, you may unilaterally stop, and you have civil, criminal, and disciplinary immunity from doing so.”

At least ten states have very similar statutes because they adopted their statutes all based off the Uniform Health Care Decisions Act. And that act — this is New Mexico, which I'm using because I was just there, which basically — and this is true of most state laws, not just the uniform health care — that basically say the general rule is you, the provider, you should comply with decisions made by the patient or made on the patient's behalf. But there's an exception: except as provided in Sections E and F. So in F — I'll just read it. “A health care provider or health care institution may decline to comply with an individual instruction or health care decision that requires medically ineffective health care or health care contrary to generally accepted health care standards.”

And, importantly, if you're going to use that exception, you're not subject to civil or criminal liability or to discipline for unprofessional conduct. So it seems to be just what providers were looking for. But the safe harbors proved to be illusory. They have for the most part failed. Providers continue to accede to surrogate demands. They are chilled from doing what they want to do. Health care providers are very litigation averse, so in order to work, safe harbors have to be clear and precise so providers know what they need to do to be protected.

The safe harbors here, in contrast to, for example, peer-review safe harbors, are neither clear nor precise. The key language here is quite vague. What is a “generally accepted health care standard”? What is a “significant benefit”? Worse, this language basically folds into a malpractice standard, which means providers need not give care that is outside the standard of care. But since the care is provided and has been provided, providers are continuing to create the very standard of care from which they want to escape.

Vagueness means uncertainty, and uncertainty means no futility policies are written. And if they are written they're not used up to the point of the seventh step. Now, we can't fault the state legislatures too much because this vagueness — and we heard this earlier from Prof. Emanuel­­ — the vagueness was unavoidable. We can't agree. We have no consensus on what the standards of medical inappropriateness are. Maybe with these tiny exceptions — a brain death, although that may be collapsing as we speak, anencephaly and physiological futility. But even there, even with brain death, for example, we continue to have litigation, or threaten litigation, to keep dead patients on life support.

We can't agree on a quantitative standard, and we can't agree on a qualitative standard. And as we heard yesterday, we basically cannot agree on the very goals and ends of medicine itself. Is the mere prolongation of corporeal existence a goal of medicine? Therefore, we've basically arrived at the point where we've determined that futility must be identified as Justice Potter Stewart identifies pornography: “I know it when I see it.”

So in the intractable cases, providers cave in. Right? And do what the surrogate wants. And this may seem like a small circle, and maybe we should say, “Well, it's such a small circle. What's the harm?” Well, it's growing. Surrogates are increasingly likely to make demands that their providers determine are inappropriate. When we ask people, “Should we do everything to save a life?” fifteen percent said yes in 1990; 22 percent in 2005. Same thing from other studies. People are more likely to demand inappropriate care. Plus there are more and more elderly patients, and there's more and more technology available to sustain them. And again at the same time, on the other side of the equation again, providers are increasingly likely to resist these demands. They're more willing to stand up for what they believe is professionally appropriate.

So more surrogate insistence combined with more provider resistance leads to more intractability. So that's the general situation in the United States. And what I want to do is just note two exceptions to this general cave-in rule, and then I want to finish by describing how things work in Texas.

First exception is that if the provider thinks that the surrogate's request is inappropriate — really inappropriate — then maybe that person shouldn't be the surrogate. Now, famously in the Wanglie case, which was mentioned earlier, the patient's proxy would not consent to stopping life-sustaining medical treatment, which was the recommendation of Hennepin County Medical Center. So the providers petitioned the local probate court to appoint a professional conservator to make decisions on behalf of the patient instead of the person who was. But the probate court denied. Right? Because the current decision maker was the husband of 53 years and the probate court said, “He's a fine decision maker. I'm not going to replace him.”

But more recently courts have been more willing to replace surrogates. In one Boston case the court replaced — and there's a lot of Boston cases. The court replaced an agent because he was in denial about the deterioration in his mother. He did not give full consideration to acceptable medical alternatives.

And just a few weeks ago, a New York court replaced a daughter who was the — not only was she the daughter, but she was appointed in the advance directive as the agent — replaced her because she failed to appreciate her mother's true medical needs and lacked the objectivity to make the necessary decisions. So that's — if you don't like what the surrogate is asking you to do, find a new surrogate.

Second exception to the sort of general cave-in rule in the United States is that because providers perceive little legal authorization to resist surrogates openly, many do so clandestinely. Surveys indicate that many withhold or withdraw life-sustaining medical treatment without the knowledge of the patient or surrogate. And so this is a lot like the early 1980s where we had — the New York cases where we had the purple dots, where we indicated who was going to be DNR status. We didn't have DNR orders but that's the way we did it, and then take the purple dot off afterwards. And, of course, these things still persist even today: show codes, slow codes, Hollywood codes — secret, masked withdrawal and refusal of inappropriate treatment. Obviously very dangerous, but it's certainly happening.

Now obviously I'm painting with a really broad brush. I'm describing 49 different states altogether in one fell swoop, but the differences between and among those 49 states and DC pale in comparison to any of those in Texas. Texas providers recognized the vagueness problems in other states' safe harbors, so they abandoned any effort to define the circumstances under which treatment could be refused. Instead they defined a safe harbor — defined and earned solely by the satisfaction of procedures.

Texas 's act, the Texas Advance Directives Act, grants total and complete deference to the treating physician as long as the physician's recommendation is confirmed by an ethics committee. The surrogate is given 48 hours' notice of the ethics committee. The surrogate is given the committee's written decision, and the surrogate is given ten days to try to transfer the patient to another facility, assuming the ethics committee has decided that that facility is not going to give the treatment. Now, there's a section, 166.046, that defines those procedures that must be satisfied. And in the immediate prior section, 166.045 says if you use 166.046 you are not civilly, criminally liable or subject to review or disciplinary action. There's no substantive standards. It says all you have to is comply with the procedures and you're safe.

So in contrast to the approach in all the other states, the Texas act makes no reference to health care standards, only to procedures: 48 hours, meeting, decision, ten days. Right? These are concrete. They are measurable. Providers know when they've earned safe harbor protection. So let me just quickly illustrate this in operation, as used in the Gonzales case. So there's Emilio Gonzales. They had — the treatment team thinks it's causing suffering and there's all these patient care conferences, but the mother remains adamant. So the hospital invokes step one of the formal process. They give Catarina this letter telling her there's going to be an ethics committee meeting. The ethics committee has its meeting. Catarina attends. The committee decides to support the physician. It agreed that the suffering outweighed any benefit. The result of the ethics committee is usually agreement with the physician.

The decision of the ethics committee is memorialized into a written decision. That's handed to Catarina. And at this point, upon the service of the ethics committee decision, Catarina — the ten-day clock starts to run. So she has ten days to look for a transfer, some place that's willing to give the treatment that Children's Hospital of Austin is unwilling to give.

Usually the ten days comes and goes and families are unable to find a transfer facility. When that happens, on the eleventh day the treating facility can withdraw the life-sustaining treatment, and there's no other recourse for the surrogate. The Health Care Ethics Committee decision is final. You cannot go to court to question the ethics committee. The Texas mechanism has been involved thousands of times, often even in the face of intense negative press coverage.

The Texas statute is perceived as a success by the provider communities. Studies show that the Texas statute improves the rate of the informal resolution, the first five steps of the AMA process. Intractable disputes, when they are intractable, they get decided in favor of providers. And the health care ethics committees don't always — it's not a hundred percent. It's more like 80 to 90 percent. They don't always agree with the providers, so it looks like they are weeding out. The cases we're stopping is now truly inappropriate. For these reasons it's perceived as a success, and other states — including other countries — are looking to Texas as copying its statute.

Now, I just want to say a couple of things about Texas. This has all been descriptive, but this is a little bit of tiny normative point right at the end. Where you have fundamental and irreconcilable values the best you can hope for is process, but if process is all you have it has to be fair both for public trust but also it affects the very validity of the law.

In its current form, it's extremely unlikely the Texas statute will last another six months. First, it doesn't comport with the requirements of Constitutional procedural due process. Forty-eight hours' notice for the final life-and-death decision is too short, and the ethics committee is not sufficiently neutral. Apart from judicial challenges, it's likely that the legislation will either be amended or repealed in the last regular session of the Texas legislature in 2009. It almost happened in 2007, where they were at least going to make these changes.

A process-based approach may be the way to go, but we have to attend to procedural fairness. They've been around for 30 years, but health care ethics committees are not ready. They don't have the competence, they don't have the neutrality to exercise the sort of decision-making authority that the Texas statute has given them.


CHAIRMAN PELLEGRINO: Thank you very much, Dr. Pope. Prof. Peter Lawler has consented to open the discussion.

PROF. LAWLER: Thanks so much for a fabulous presentation. I learned a lot. I'm not a physician. I'm a mere political scientist. So — still a doctor, though. And there is a principle of political science here that you're calling attention to, and that is procedure can simply be a way of resolving a fundamental dispute when it comes to substance. When fundamental values disagree, it's still possible to have a process-based resolution. But in political science we say there are really definite limits to that. There can be some disagreement but not too much. So the Americans disagree on a lot of things, but the Americans have to agree on limiting government, freedom of religion, and all these things. So there has to be a whole lot of substantive agreement before you can turn it to process.

Too much substantive agreement can't be solved by process alone. And you've been telling us, as a lot of the other speakers we have had have been telling us, the medical profession is plagued by a lack of consensus and, in fact, an increasing lack of consensus. At the end of your fine article you say we don't have any consensus on the proper ends of medicine. And we heard yesterday this is getting worse. We no longer know what health is, and we're no longer even sure health is in the area of enhancement and catering to the patient's needs and so forth.

We no longer even know whether health, strictly speaking, is the end of medicine. So, A, we don't know what health is, and if we did know what health is we wouldn't be so sure health is the end of medicine. And your second point is we may have to ration medical care. We already are in some ways. But we have no consensus on the acceptable criteria for rationing. So can process really resolve that?

And we somehow know there should be legitimate restrictions, number three, on patient autonomy, and providers really want there to be restrictions on patient autonomy because, to speak plainly, sometimes providers think that patients are nuts, causing cruel and unusual suffering for no good reason. But we have no clear criteria for those limitations.

And not only that, you told us the situation is getting worse. The patients are getting more insistent that everything be done. The providers are getting more resistant. So you have kind of a culture war between patients and providers. And then you have this very word futility. We have no idea what that means, so we have this futile quest to define futility. Gil Meilaender said in the last session it's very questionable what futility means in this sense. Someone might says this: “It's never futile to sustain human life. In fact, it's a sign of emotional maturity to get over your personal suffering, your personal squeamishness, and go ahead to affirm the infinite value of the life before you by sustaining it.” But others would say it's very immature to sustain life that ain't never going to come back, that's always going to be unconscious. But then Gil might respond, “Futile becomes a little blurry the more you think about that because it might come back a little, or there might be a small chance it will come back.”

So with all this in mind and even real, radical disagreements about what existential maturity means and what cultural growth means, because you say even in your article that this consensus is not imminently forthcoming. That may be deep irony. Or you may agree with the presentation this morning that as cultural growth really starts to kick in these consensuses we're looking for will forth come. But I doubt it. I tend to think that the situation — as medicine gets more powerful, as Leon Kass well said, the purposes of medicine are going to get more blurry, as we've seen so many examples of the last day or two.

So I'm little bit doubtful that process can simply resolve all this, and process seems to me to mean, in the final analysis the physician in 80 or 90 percent of the cases backed up by the ethics committee, his view of futility or her view of futility and appropriateness is what triumphs. I forgot this was Jeopardy. I haven't put this in the form of a question, but let me just say a little bit more to show me that process can really overcome this problem of not only incompatible values, but values get more incompatible all the time.

CHAIRMAN PELLEGRINO: Thank you, Peter. Dr. Pope responds, and then we'll return to the Council for further comment.

DR. POPE: I'm not sure that I agree that there's a limit to what process — I mean, I'd be real interested to see that literature that suggests that when substantive agreement reaches a critical point that process —

PROF. LAWLER: For example, there are limits to toleration. You can't tolerate people who don't accept your fundamental principles. So Democrats and Republicans can have process-based solutions. Democrats, Republicans, communists, and fascists, and throne and altar monarchists, there probably can't be a process-based resolution to all their differences.

DR. POPE: Maybe we're not on the same page, because maybe when you say “process-based,” the object of the process — maybe what you're thinking is consensus, while the outcome of the process here is certainly not consensus. It's like the court system. It's process-based. We don't have ex ante standards that tell us the answers to lots of different sorts of disputes, but we're reasonably happy with the process.

And so I guess I think that a process-based approach is inevitable. The real question is really what the form of the process is. Are we going to create — are we going to empower ethics committees, or are we going to retreat from where we went to in the 1970s and send end-of-life disputes to the courts? We didn't think that was a good idea because we thought courts don't have the competence. They're too slow or they're too expensive. But maybe we trust courts. That's a process-based dispute resolution mechanism that's been around.

But I agree that given a lot of the points that you mentioned that it doesn't look real promising. In fact, for that reason it looks like this discussion about how providers and patients should resolve these sorts of disputes will probably in a temporal context be overtaken by the payers. In other words, since we are so slow — and you're right that the disputes are so intractable and growing in their ferocity that it's going to take us time to work that out. In the meantime, when Medicare starts to consume 90 to 100 percent of the entire federal budget, decisions will be made. So things may just end up being resolved that way.

CHAIRMAN PELLEGRINO: Thank you very much, Dr. Pope. Dr. Meilaender?

DR. MEILAENDER: I'd like to make — these aren't really questions. They're two comments, and they may seem perverse. You may make of them what you will. But I start by saying that I don't actually for a moment think — it's not that I think doctors must do whatever patients want. I don't think that at all. But I just want to note a couple of things that are puzzling to me.

You described — I don't have the exact thing, but I scrawled it down. When you were describing the notion of a safe harbor, it was that I'm asking you to do something that you think is inappropriate professionally. You don't have to do it, and we provide you with a safe harbor that protects you in that decision.

The strange thing to me — and I don't quite know what's going on — is that in our discussion yesterday about a different set of issues in reproductive medicine, the pressure seemed to be that if I ask you to do something that you think is inappropriate you should do it anyway. And now in the end-of-life decisions the pressure seems to be that when I ask you to do something you think is inappropriate you don't have to do it.

Now maybe there's an explanation to work that all out, but I think there's more going on here than has come to the surface and that there are, in fact, buried judgments about moral positions that are at stake that aren't going to be sorted out simply through an appealed process. That's my hunch. And I just noticed the kind of puzzling phenomenon of putting yesterday afternoon and this morning back-to-back.

Then the other thing that puzzles me is that when advance directives first came on the scene after perhaps an initial period in which physicians weren't too positive toward them, they gradually became much more positive, I think, and the working assumption was that patients would use them to refuse treatments. Now all of a sudden, when we have by your data an increasing number of patients or surrogates using them to ask for continued treatment, they're not so good anymore. But a process solution — the advance directive was a process solution from the perspective of the patient, and I don't think it's worked that well. Why should we assume that a process solution that kind of immunizes the physicians is going to work well?

Years ago in the early years of thinking about advance directives, Robert Burt wrote a book called Taking Care of Strangers, and the title had a double entendre in it. It was about patients whose condition makes us uneasy, and you say, “I'll take care of them.” And that can mean several different things. And one thing it can mean is “I'll see to it that they go away.”

Burt 's claim was that what one needed was to force conversation. And I realize that it can go on a long time; it can seem impossible. But these are all attempts, whether from the standpoint of the patient or now from the standpoint of physicians, all attempts to end conversation. And I don't know whether that's the best way to deal with these problems. Neither of those comment exactly, but they're just matters that seem puzzling to me, and I'd welcome anything you want to say about it.

DR. POPE: I think there' s a big difference between advance directives and calling that a process-based approach and calling this a process-based approach, because this is a process-based approach to conflict resolution. Advance directives may be a process-based approach, but it had nothing to do with conflict resolution. I mean, we always agreed on the goal, which is we want to do — or we will do (is it a matter of public policy?) — what the patient wants. And so advance directives were just a vehicle for us to understand what it is the patient would have wanted had she not lost capacity.

DR. MEILAENDER: I don't think so. It was a way of getting an over-bearing medical profession off of patients' backs. I mean, that's conflict.

DR. POPE: I guess my view of advance directives was that they came after the concept of informed consent. So we already have the principles. Advance directives were merely a vehicle for getting at it. It's an evidentiary vehicle but not really changing the principles. But one thing to note is, even in Texas the main defenders are very — it's not built into the statute, and it should be. But the main defenders ascribe to the AMA process, because that's where they got the statute from, and the statute in turn came from Texas. So it's a big loop. But they follow the first five steps of the AMA process, so it's not that we're jumping straight to the ethics committee invoking this formal dispute resolution.

There's a great deal, sometimes weeks or months of patient conferences, lots of communication, lots of mediation before the formal process even begins. So we're not preempting communication.

CHAIRMAN PELLEGRINO: Thank you. I am going to take the same approach I took with the last speaker since we have a time bind. We have three council members — Prof. Dresser, Eberstadt, and Gómez-Lobo — so, Dr. Pope, would you mind if we have them make their comment and you respond? First we'll ask Dr. Dresser.

PROF. DRESSER: Thank you. You have a great overview and really, I think, educated us on this. A couple of points. One is this Texas bill. It's interesting, to amend the statute. It's sort of — the idea of a process-based approach in the hospital is to avoid going to court, but in order to be acceptable as a process-based solution it has to get more like a court in that notice and five or more helpers. Is that really in the statute, five or more helpers — or the bill?

DR. POPE: The word may not have been “helper,” but it is sort of like the advocate. In other words, it doesn't need to be counsel. It could be a rabbi or anybody.

PROF. DRESSER: I see. I just wondered if you have any thoughts about what procedural protections are needed. If you were writing the bill, what would you put in there? And then secondly, just to observe that there is this overlap between conscientious objection and futility where the issue is whose view should prevail, the physician's or the patient or the patient's surrogate?

So yesterday we were talking about — some people were saying, well, the doctor's view should prevail, especially in reproductive decisions. And I think that view is influenced by a substantive view that — you know, a pro-life approach. And then today with futility we have a struggle, and the pro-life approach is against letting the doctor decide; it's going with the patient.

And so I just want to mark that. I'm not sure where to go with that, but I think certainly if we do a report on both of these issues we ought to point to the commonality and the differences and whether our views on who gets to decide are influenced by our substantive views on the particular issue they're arguing about.

CHAIRMAN PELLEGRINO: Thank you, Dr. Dresser. Dr. Eberstadt?

DR. EBERSTADT: First I want to commend you for that very informative and comprehensive presentation. I thought that was very useful. I wanted to make an observation to which you may or may not choose to respond. It's an observation about medical contraindication of food and water, which takes a theme from the previous section and which also comes up in your presentation.

In one of the slides you presented at the slide that says “Step 3: Hospital Ethics Committee Decision,” the recommendation is outlined here: “Treatment plan for the patient be modified to allow only comfort measures such as hydration, pain control, and other interventions designed to decrease the patient's suffering.” It looks to me like a striking oversight that food isn't mentioned in there, that hydration is mentioned but not food. If it is not an oversight, it seems to me to be even more troubling.

I am not a medical professional. I am a consumer of medical services, but I don't regard food and water as medical services. There are an enormous number of life-extending measures that have been developed by humanity's ingenuity over the past generations — antibiotics, dialysis, heart and lung machines, other sorts of life-support systems — but food and water existed before human ingenuity in medicine came in to open these sorts of options for the prolongation of life.

It looks to me as if we have a paradox confronting us today with this consideration of medical contraindication of food and water, and the paradox seems to me to be this: for convicted criminals in our penal system in the United States, the idea of sentencing someone to death by starvation or by dehydration would be absolutely inconceivable, yet that possibility is not entirely remote for people in certain sorts of medical extremes. I suggest that there ought to be a sort of an ethical line in the sand regarding food and water for patients in distress.

Thank you.

CHAIRMAN PELLEGRINO: Thank you. Prof. Gómez-Lobo?

PROF. GÓMEZ-LOBO: I'm looking at your article in the Tennessee Law Review. It's really very clear. You gave a very clear presentation of these mirror-image situations where the patients or the proxies of the patient want to continue treatment; the physicians think it's futile. On the other hand, we have the physicians wanting to carry on and maybe the patients wanting to let the person die. Now, both situations for me are very troublesome, of course, and they lead me to try to understand the force of technology and of medical technology, above all, sort of driving our culture at this very moment.

The question is a very simple one. Of those two situations, which is the most common one? The reason why I ask is because I think the popular perception is that there is more of the situation in which the technologist insists on using the technology, and it's the lay persons who want to resist that. I've been relatively close to two cases like that. So just an approximate sense that you might have of what's the more frequent situation.


DR. POPE: With respect to Prof. Dresser 's comment about how to fix the ethics committee without basically converting it into a court, first I think that completely apart from the futility dispute, they need to be significantly strengthened, as do IRBs in terms of their training and their competence, their composition, and their methods. But we have models. We certainly have models to make them more fair without making them into courts. Right? We have peer review in hospitals, which works perfectly fine. We allow judicial review but we only allow the courts to peek in. So we can sort of have our cake and eat it too, which is we can say to the critical care intensivists, who are typically the ones who bring these cases to the ethics committee — the ethics committee is basically the last word. We will allow some judicial review, but that need not chill you because they are only going to check a tiny bit to make sure the proper procedures were followed.

Same thing in the business context, right? We have the business judgment rule. If you are suing the directors of your corporation because you — for example, Disney because you think they shouldn't have paid Michael Ovitz this incredibly large golden parachute — “That should have been my dividend, not his paycheck.” — again we defer. The courts won't take that because they will say that was a business decision; that was for the board of Disney to decide, not for me to judge. They will peek into the decision but only to make sure: “Did you bring in the investment advisors? Did you bring in the economists? Did you have a basis? Did you deliberate and have some information to make the decisions?” I think there are models to look to to strengthen the ethics committee without basically converting it into a court.

For Prof. Eberstadt, I don't understand sufficiently the medicine to understand when artificial hydration is medically contraindicated. But your analogy with the convicted prisoners, I don't think that that's terribly informative because the difference, of course, here is that with the advance directives these are people who wanted this. They consented to being dehydrated. And so I don't think that there's a big difference when you consent to it and when you don't consent to it. I guess what you're now judging is the prisoner and the person you subject to this Texas mechanism so that they are both involuntarily being deprived, except again the difference is that there has been a great deal of multi — assuming a good ethics committee, lots of medical expertise and lots of multidisciplinary input that this is in their best interests, while if we did do that it would violate the Eighth Amendment if we did it in a prison context. But if we did do that for prisoners, that determination would never have been made. That wouldn't have been part of the conviction process.

I think the difficulty in answering Prof. Gómez-Lobo 's question is that you may be right that there may be — the bigger problem out there may be the aggressive doctor, not the aggressive surrogate. The problem is, to get data on that is very difficult because the aggressive doctor is going to get consent. So you don't have conflicts that are crystallized so that you can identify them. So if your oncologist says, “Look, we've had three rounds to achieve remission. Let's try a fourth round.” I mean, hardly any oncologist would probably do that, but then the patient says okay. So if you convince using — you pitch that to the patient, framing it in a way that's going to solicit an affirmative answer, you have a consensual situation, so you don't have any conflict.

So the problem is, I think there probably may be more futility conflicts than the classic right-to-die conflicts in today's world because we have such a good structure with our health clinician's laws, POLST, MOLST, and so forth that we understand that if the patient wants to stop they get a right to stop. And so when the physician is pushing, they get consent. So you don't actually have a conflict. We don't have numbers to compare there.

CHAIRMAN PELLEGRINO: Thank you very much, Dr. Pope. Are there any more comments? We have just a few moments left. If not, we'll move directly to the public testimony session.


(see also additional written comments)

CHAIRMAN PELLEGRINO:   In this part of the meeting, we proceed as follows. Each of you has registered, and only those registered will be called upon to comment. Because of time limitations, we customarily allow five minutes. I will call you your name and your affiliation and suggest, I hope, with apology, that brevity, focus, and clarity is the best way to get your message across. It will get into the record and will be available. Without further ado, we ask you to try to – not only try to but to keep the five-minute limit. First I will call on Gretchen Borchelt – forgive me if I've mispronounced the name – of the National Women's Law Center.

MS. BORCHELT: Thank you, and I will try to keep to five minutes, as requested. My name is Gretchen Borchelt, and I am a senior counsel with the National Women's Law Center here in Washington, DC. The center has been in existence since 1972, working to improve the lives of women and girls in this country. We're a nonpartisan, nonprofit organization.

A major focus of our work has been the issue of religious refusals to provide health care services. And our main goal is to ensure that religious restrictions on health care are not imposed to the detriment of women's health. And I did provide written comments which focus on the impact of religious restrictions on health care services for all patients, and in particular the impact on women's reproductive health.

But I was wanting to speak today about something else that is in my written comments, which is the legal landscape. I think it's particularly relevant given yesterday's discussion. We heard a lot of talk yesterday about the issue of accommodation and whether religious beliefs and patient's needs could be accommodated. And I think we could look to the law and find an answer there, which is that Title VII, which is the federal law that prohibits employment discrimination on the basis of religion, has been in existence. It's part of the Civil Rights Act of 1964. And what is says is that employers cannot refuse to hire or cannot fire employees based on their religious beliefs or practices. It also says employers cannot discriminate or treat employees in an unfavorable [manner] in the terms of employment, such as assignments and benefits, because of the employee's religious beliefs.

And so courts that have interpreted Title VII have said that an employer has a duty to provide a reasonable accommodation to employees who have religious beliefs as long as that accommodation does not constitute an undue hardship on the employer's business. So courts have said — it's very clear that Title VII is a working accommodation system that provides a careful balance between an employer's need to protect an employee's religious beliefs and the needs of the people that the employer serves.

And I would say that this accommodation system does work, and we heard yesterday from Dr. Brody, who said that in the Michigan legislature, when they were considering a very broad refusal bill, none of the legislators could actually come up with an example of someone who had been fired or discriminated against or forced to perform a service that he or she didn't believe in. And I believe that's because Title VII is working, and in the employment context you are seeing accommodations being made. So I would urge the Council to, when you're thinking about an accommodation system, to look at Title VII and how it's been used in the health care field, because it actually has been. There have been many cases about health care providers' religious rights to refuse and how the patient needs to be accommodated.

The other thing that I would like to mention today briefly is the proposed regulation that the Department of Health and Human Services put out last month, which I know is included in your briefing materials. And I would just say the proposed rule, according to HHS, is meant to inform providers about their legal obligations under three laws. And you heard about the laws yesterday. They're also in your background materials. They're the Church Amendment, the Coats Amendment, and the Weldon Amendment, and they give providers the right to refuse to provide abortion or sterilization services.

Now HHS says that the intent of this regulation is to clarify existing law, but in fact it would do just the opposite. The language is very expansive and very ambiguous, and in fact it would cause confusion for health care providers, for state and local governments, and for research institutions. And one of the problems is that the proposed rule doesn't include a definition of abortion, and it leaves the door open for insurance plans and hospitals and other entities to define abortion in any way they choose, and that could reach common forms of birth control.

Another problem with the proposed rule is that it doesn't talk about how it interacts with Title VII. It seems that it could even be meant to upset the kind of careful accommodation system that Title VII has put into place and which is working. And so it's very disturbing that Title VII isn't even mentioned in this rule at all, which, again, will lead to confusion in terms of how the system is already working.

The proposed rule also undermines patients' access to information, to counseling and to referrals, and it also says nothing about protecting patients in emergency situations. And I know those were all situations that were discussed yesterday.

And then finally, I should mention, just as troubling as that, the rule would expand the realm of who can refuse and on what circumstances. So Dr. Paris yesterday questioned how far the Church Amendment could go, and he wondered whether it should apply to, for example, staff stocking pharmacy shelves or staff who administer claims in the office. And this proposed rule would reach all of those types of employees and many more.

So we are very troubled by this proposed rule, and I urge the Council to consider it carefully and to make its views known to HHS in terms of how far-reaching and unnecessary this proposed regulation is.

Thank you very much.

CHAIRMAN PELLEGRINO: Thank you very much. Next on our list is –

PROF. ROWLEY: Can I ask a question? Did you say that you have a fuller statement that's been submitted to the Council?


PROF. ROWLEY: And I guess the question is, do we have it in our briefing books?

DR. DAVIS: It will be appended to the transcripts. We have a number of them, and they've been coming in in series. We couldn't get all in the briefing books. So what we're going to do is append them to the transcript. They'll be part of the official record. They'll be available to you as well as the public.

PROF. ROWLEY: Thank you.

CHAIRMAN PELLEGRINO: Next on our list is Lois Uttley. I'm sorry – again, I apologize if I'm wrong – of the Merger Watch Project.

MS. UTTLEY: Yes. It's Uttley. Lois Uttley. Thank you very much, Chairman Pellegrino. I'm the director of a project called Merger Watch, and the project is about protecting patients' rights and access to care in situations where religiously sponsored hospitals are merging with nonsectarian hospitals, and helping to devise ways of balancing these conflicting rights and obligations.

I've come this morning to talk mostly about the discussion you had yesterday about provider conscience and reproductive care, but I do second the comments of Dr. Dresser about how there are some interesting implications for end of life care as well in which providers may not wish to honor patients' wishes.

My written testimony, which I submitted, uses a case example to take you through the situation of a rape victim who goes to the emergency room and is not provided with even information about emergency contraception. I cannot go through that whole case this morning in my brief opportunity, but I recommend that you take a look at it.

I just want to hit a couple of key points, though. As your council discusses the issue of provider conscience, I really urge you to consider another imperative to protect the rights of patients to receive accurate medical information in need of treatment in a timely manner and to use their own ethical beliefs in medical decision making.

I was quite struck yesterday with a discussion about patient-centered care, which I had assumed was something that most of us agreed with and is an aspiration of the profession, but there was some suggestion yesterday that perhaps it would lead to the subjugation of a physician's clinical judgment to the uninformed demands of a patient or turn the physician into a mere technician filling consumer demands.

I think you might all agree that the Institute of Medicine definition of patient-centered care is more appropriate: health care that establishes a partnership among practitioners, patients, and families to ensure that physicians respect patients' wants, needs, and preferences.

So I want briefly to comment also on the health and human services regulations that have been issues that are in your packet. Secretary Levitt has insisted that he proposed regulation would not in any way change a patient's right to a legal procedure, would not limit patient access to care. And I think you'll see from the analysis I've presented of the rape victim case that that really is not the case. In fact, those regulations would allow health care practitioners and health care institutions to violate a patients' right to informed consent by refusing to tell the patient about those potential treatment options that the provider finds objectionable, would allow health practitioners to refuse to provide patients with any medical services or information the provider finds morally objectionable even for reasons that are completely contrary to medical science or based on discriminatory views.

Further, it would allow the health practitioner to refuse to even provide the patient with a referral to another practitioner. It would obligate nearly 600,000 health care institutions to certify that they do not discriminate against practitioners with moral objections to certain services but with no similar obligation to certify that patients' medical needs will also be met.

So I want to recommend that this Council carefully look at those HHS regs, and I would urge that you recommend maybe withdrawing and giving future consideration. And I want to recommend that you also, in drafting any white paper about provider conscience, put in some ways in which patients rights should be protected, including patients' right to informed consent must be considered paramount, acute care hospitals and other health care facilities that are licensed to serve the general public and receive patients needing emergency care must be expected to provide such care immediately.

I wish you would protect the ability of nonobjecting health practitioners to fulfill their duty to their patients when they are working in facilities that wish to gag them and prevent them from fulfilling their duties.

And, finally, I would urge that for nonemergency care referrals to alternative practitioners or facilities must be expected in situations in which the institution or provider disagrees for a moral reason.

So thank you so much for the opportunity to present this testimony.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Stephen Mikochik of the National Catholic Partnership on Disability.

MR. MIKOCHIK: Thank you, Dr. Pellegrino, for the opportunity to speak. Unfortunately I don't have a PowerPoint presentation. I want to speak for a few minutes, if I could, on the issue of futile care and the concerns that we disabled people have about the practice. And we're talking about care, particularly the withdrawal or withholding of life support by a physician contrary to the wishes of their patients or their surrogates.

Just to introduce myself, my name is Steve Mikochik, and I'm a professor of Constitutional law at Temple Law School in Philadelphia. I'm also the chair elect of the National Catholic Partnership on Disability. This is an organization that was established by the United States Catholic Bishops to implement their pastoral statement on the rights and needs of persons with disabilities.

We are – “we” meaning the 14 million American Catholics, who we represent – concerned about futile care. And, simply put, we're concerned that cost containment and the pressures to contain costs are going to have a strong influence on doctors in the future, as they do presently, to withdraw or withhold life support, not because they think it's futile in prolonging the lives of disabled people, but because they think the lives that such treatment prolongs are themselves futile.

Doctors are human, and they share to some extent the same negative attitudes that pervades society concerning disability. And if you couple that with cost containment, it poses a problem. I think it blinks reality to ignore or deny the fact that physicians in the future will make decisions about life support for disabled people based on the physician's perception of the quality of that life. And, more disturbing, I think, insurers are going to be, I think in the future, far less likely to pay for that support than they are now for disabled people to continue their lives.

I think particularly the problem of insurers less likely to pay might offset the reluctance physicians have – as pointed out by Dr. Pope – to resist the requests, particularly of surrogates. If insurers are less likely to pay for the continued life support, that's going to be an additional incentive on the part of physicians to decline, withhold, or withdraw it. The landscape legally is very receptive now to that type of decision by physicians.

I find it very uncomfortable to disagree with someone named Pope, but I do have to disagree to some extent with his characterization of the Texas law. This was a 1999 law that Texas passed. It as a compromise provision. We in the National Catholic Partnership on Disability were informally but substantially involved in 2007 with the Texas Catholic Conference on this issue. The reason is because the Baby Emilio case arose from a Catholic hospital in Austin.

Dr. Pope is right to say that there is no definition of appropriate or inappropriate care in the Texas statute, but he didn't mention that the statute only applies to the withholding or withdrawal of treatment if the patient is qualified. And the statute says to be qualified a patient either has to have a terminal condition or the patient has a condition that is permanent and prevents the patient from making decisions for herself or for caring for herself and would prove fatal if the life support in question was removed.

Now you can kind of sit back and think about horrible hypotheticals – you know, somebody who is profoundly developmentally disabled is unable to make decisions for themselves. Or somebody who is a quadriplegic and has problems breathing is unable to care for themselves. You'd say to yourself, “Well, the legislature never intended the statute to apply to that situation.” Except the Supreme Court of Texas has said if a statute is plain on its face – and this statute is – a court cannot look at the legislative history. Right? So the statute is to be applied on its own four terms. And obviously this is an open invitation to making quality of life decisions concerning futile care, concerning the perpetuation of life support for disabled people. And, as Dr. Pope indicated, it understates the broad flexibility given to physicians to withdraw life support because they consider it inappropriate or ineffective.

Now, I'm not trying to criticize Dr. Pope. I know he's making a good-faith effort to deal with these issues. But I gather from what he was saying, the less standards the better because the process should deal with it without any intervention of external standards. The problem with any process-based determination is that it perpetuates prejudices concerning what is reasonable. This is why, for example, historically we haven't let legislatures make decisions concerning the free exercise of religion, because their decisions would promote the exercise of a majority of religions, but religions like Jehovah Witnesses or Seventh Day Adventists that aren't majority religions wouldn't get the same accommodation because they don't fit into to the kind of basic notion of what is a reasonable religious practice. We don't let legislatures historically make those judgments. We require that they adhere to external standards. You shall not prohibit the free exercise of anyone's religion, majority or minority.

If we're talking about ethics committee decisions – and remember in Texas they're not subject to judicial review. Courts in Texas can review only whether there are alternative placements available. They cannot review whether the decision to withdraw treatment is inappropriate. An ethics committee is quite likely to carry forward the same prejudices concerning disability as are pervasive in the rest of society.

Now, we know this is a terribly difficult issue. We've submitted for your review a statement that we developed and approved this summer trying to lay out standards that call for a strong presumption in favor of continued life support. We're not experts in the area. You are. But we ask you, in considering what policies to recommend to the President on the issue of futile care that you recommend policies that strongly presume in favor of life support so that the decision to withdraw or withhold treatment is made not on the quality of the life involved but on the quality of the treatment at issue, because we think that it's not too much to say that the lives of countless disabled people hang in the balance.

Thank you very much.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Dr. Hanna Klaus of the National Family Planning Center of Washington. Dr. Klaus.

DR. KLAUS: Thank you very much. I appreciate the fact that I'm allowed to speak with you. I'm sorry that Dr. Lyerly is not here, because I want to comment on the ACOG committee decision, the ethics committee. I'm a life fellow of ACOG, a longtime obstetrician/gynecologist, and I've seen ACOG change completely from the focus on saving the mother and the child to disregarding the child entirely, even though ACOG still has the logo of a woman holding up her baby.

But listen to this. Obviously I think we've already said that if someone is opposed for any reason to doing an abortion, they cannot be forced to do it. But more and more people who are opposed to abortion are sort of forced out of this specialty, limiting the choice of doctors available to patients. Not a week goes by that I don't get asked, “Can you recommend a pro-life obstetrician/gynecologist?” And, by the way, I live in this metropolitan area. “Can you recommend someone who will treat natural family planning choices with respect?”

I wish there were far more people who are doing that. And that brings me to the question of “Who defines the standard of care?” We've shifted in the last half century from restoring health or at least alleviating disease and preventing death to providing technical support for lifestyle changes, some of which involve considerable long- and short-term risks to life and health.

Fertility is not a disease, yet we have attacked it as if it were. When treating pathology, the physician weighs the possible benefits against the possible risks, but there is no risk in possessing normal fertility, whose control can be managed easily with modern natural family planning methods.

Examples abound of instances where drugs with long-terms risks of pathology are prescribed or dispensed on demand. For instance, in Los Angeles a contraceptive steroid is given regularly to women of Mexican extraction even though it is known that they are quite likely to develop diabetes mellitus Type 2 within 15 to 20 years. Another example of that is the treatment of polycystic disease of the ovary. I realize I am getting into specialty areas here, but this is widely known and yet women and girls continue to receive contraceptive steroids because they might get pregnant, as I heard at a specialty meeting. Never mind that in 15 or 20 years they're going to be at high risk for diabetes and all the costs to them and to society, plus the fact that when contraception is made widely available the result is promiscuous behavior and tremendous rise in sexually transmitted diseases and also a lot of unplanned pregnancies.

Fifty-eight percent of woman who came for abortion, according to the last national survey of Family Growth, were using contraception during the month of conception. So that's no great triumph. The same thing happened in Scotland, when they gave women emergency contraceptive pills and the abortion rate didn't go down. And this is a very large study through a WHO.

I would also submit that the articles which the ethics committee selected were [strategically] selected [to support only one point of view]. They did not show anything, for instance, that would cause anyone to suspect that emergency contraception with Plan B was not the only way to go. In fact, it isn't. EC does not have that high a success rate either. It's only useful if it's given before the final phase of ovulation begins, and yet this is being put out as if it were a wonderful thing, frankly to profit many people who provide pills.

So I would suspect that we need to ask, first of all, for support for physicians to practice according to their conscience and to make sure that physicians who have that conscience position are available to women who want that same choice.

Thank you very much.

CHAIRMAN PELLEGRINO: Thank you very much, Dr. Klaus. Our next speaker is Dr. Sandy Christiansen of Care Net.

DR. CHRISTIANSEN: I think I can say good afternoon, Chairman and distinguished members. It is my privilege to be here.

As an obstetrician/gynecologist who has chosen not to perform elective terminations of pregnancy, I can attest to the difficulties and pressures that physicians face when attempting to practice according to their conscience. When I began my residency in 1986, I fully expected it to be physically and emotionally draining, but I wasn't prepared for the intolerance and hostility that I would face because of my faith. I was the only intern who elected to not perform abortions, and it was understood that it was because of my Christian convictions. One of my fellow interns was frequently given the opportunity to scrub in on gynecologic cases, and I approached my chief resident and inquired, “I would like the same opportunity.” And she said, “Well, this person was working hard at doing the abortions, and so she gained this privilege, which you refused to do, so you do not get the perk.” At the time, I did not question this injustice, believing I didn't have any recourse, but since then I've come to understand that I missed learning opportunities simply because of my values.

Another incident that occurred during my residency training is a flagrant example of discrimination and disrespect. I was chief resident at this time now. Several years have gone by, and I was in charge of the obstetrical service. A patient came to the labor floor who was to have a late mid-trimester abortion, and I approached my attending physician and explained that I was uncomfortable participating in this patient's care because of my beliefs, but I had made arrangements with another resident to take care of this patient. She proceeded to reprimand me loudly in front of my team of residents, interns, and students, accusing me of abandoning my patient, of shirking my responsibilities, and being insensitive to my patient. Not once did she acknowledge the legitimacy of my action or the fact that this patient was being well taken care of. I was stunned by this outburst, which not only denigrated my values but my character and professionalism as well.

Today, these are not isolated incidents, sadly, but part of increasing pressures that health care professionals are facing to conform to the socio-political dogma of reproductive rights, of which the November 2007 ACOG Ethics Committee Opinion is a good example. A recent survey from the Christian Medical and Dental Association noted that 40 percent of respondents had experienced some level of discrimination during their lifetime based on their pro-life views.

Recently I spoke to a group of students from the University of Maryland and Johns Hopkins School of Medicine. Our future health care providers, doctors, nurses, and scientists are also concerned about these issues, and that's partly why I'm here today — for them. My hope is that through Secretary Leavitt 's proposed regulations that our future health care providers will be free to practice according to their conscience without the fear of loss of learning opportunities, reprimand, or loss of their very jobs.

This is not just simply a religious issue nor simply a reproductive rights issue. I believe it speaks to who we are as a society and what we value. Last week Los Angeles Times included an op-ed from someone named Crispin Sartwell, who identified himself as a pro-choice atheist but went on to say that he supports Secretary Leavitt's proposed regulations, which I believe are designed to bolster existing laws supporting conscientious refusal. I couldn't agree more with his statement, and I quote:

The extent to which an institution seeks to expunge individual conscience and moral autonomy is the extent to which it is totalitarian and dangerous. The idea that I resign my conscience to the institution or to the state is perhaps the single most pernicious notion in human history. It is at the heart of the wars and genocides of this century and the last.

In closing, last week, I read about Randy Stroup of Oregon, who was diagnosed with metastatic prostate cancer and applied for health insurance, which the state denied because it was calculated that he had less than a five percent chance of surviving. But the State had an alternative solution for him: they were willing to pay for his physician-assisted suicide. Brave New World, here we come.

Lastly – I'm about to close here. I feel that we really have fallen so far from the ethical and moral principles that founded the practice of medicine, and I will close with a comment about Francis Schaefer 's and C. Everett Koop's 1979 book Whatever Happened to the Human Race. They wrote of society being on the edge of a great abyss, and from my view I feel that our ride on the slippery slope in fact is taking us into the abyss. And it is my hope that someone – and hopefully this group here – will throw us a big rope, because I believe that supporting physicians' First Amendment rights protects the First Amendment rights of us all.

Thank you very much.

CHAIRMAN PELLEGRINO: Thank you, Dr. Christiansen. Our next speaker – yes, sir?

DR. HURLBUT: Could I ask the speaker where your training took place, where those incidents took place?

DR. CHRISTIANSEN: I'll say Philadelphia.

CHAIRMAN PELLEGRINO: Our next speaker is Susan Fogel of the National Health Law Program.

MS. FOGEL: Thank you, Dr. Pellegrino and Council members for this opportunity to speak on this really critical issue of patient care and refusals.

I'm an attorney with the National Health Law Program. We're a national public interest law firm that works to improve access and quality of care for low-income people, minorities, people with disabilities, and the elderly. And we approach the issue of refusals and religious restrictions from that perspective.

I also want to echo some of the comments that have been made that raise concerns about the HHS regulations. I think everything that I want to say again emphasizes why those regulations really threaten quality and predictable delivery of health care. I have also submitted written comments, so I just want to make a few points.

We've already heard – and you all know – that the basics of modern health care delivery are evidence-based practice, patient centeredness, and prevention, which collectively are intended to ensure quality of care. Failure to adhere to prevailing standards of care and accepted medical practice really harm individual patients in very concrete ways.

I think too often the analysis of health care refusals becomes a debate that sounds like a moral contest between providers and patients, and what gets left out of the conversation is the real medical consequences to patients. There is real patient harm that needs to be considered in this analysis. Certainly the individuals for whom we advocate are the most vulnerable and really suffer the greatest consequences.

This debate often seems to rest on certain assumptions that we think really need deeper analysis. One is that the services to which people are objecting or refusing to deliver are optional elective lifestyle, not necessary to health or well-being, and are based on just whims and desires of women. The second challengeable assumption is that there only limited or acceptable burdens on people. And third is that the patient can obtain these services elsewhere.

I think that for low-income women in particular all of these assumptions are erroneous. Lower income women often don't have access to health care, they are locked into managed care plans, they perhaps can't afford to pay for treatment out of pocket, and they – even in urban areas, if they have health insurance we know that limits their treatment options. So we don't want to think about this as an abstract or philosophical debate but really something that has real impact on patients.

In addition to health care refusals there's been a lot of talk about individual providers. I want to make sure that we also look at the other side, which are institutional restrictions which prohibit providers from offering care that they and their patients may have decided is appropriate in accordance with medical standards of care.

There was an article in the American Journal of Public Health just last month, I think, looking at miscarriage management and real incidents of what has happened in hospitals that prohibit physicians from acting what they consider to be in the best interest of their patients.

There's a story about a doctor. All of the names in the study are anonymous, but he had a patient who was 19 weeks pregnant. She had a premature rupture of her membranes. The fetus was not yet viable. The patient was septic. She had a dangerous infection that was threatening her life, but the fetus had a heart beat, and the hospital refused to allow him to terminate the pregnancy. And, as he said, we were giving her medication to keep her blood pressure up, using a cooling blanket to keep her temperature down. The woman was dying before our eyes, and still the termination was not approved. The outcome is the patient was in the ICU for ten days. The fetus died in utero, and she suffered significant health — long-term health problems.

We also want to look at the fact that in a health care patient provider relationship there is an inherent imbalance of power. Part of that power is based on the knowledge and judgment of the health care provider. It is erroneous to suggest that patients come into this relationship in an equal balancing position. Also, restrictions on information services don't take place in an open marketplace. We know patients don't really have – often don't have good choices.

So contrary to the modern trends of health care delivery of evidence-based, patient centered, health care refusals and denials of care really are taking women's health backwards to a paternalistic health care system where treatment decisions are made by physicians and systems, not by physicians and patients.

Medical guidelines give us some really concrete guidance, I think, and ways to analyze the impact of these restrictions. I just want to give a couple examples, not of what medical associations say about refusals, but if we think about the fact refusals are permission to opt out of providing care that would otherwise be accepted medical practice.

So what do they say? We know they all talk about informed consent. Informed consent is intended to help begin to balance the relationship between providers and patients. The American Medical Association says the physician's obligation is to present the medical facts accurately to the patient. The physician has an ethical obligation to help patients make choices among the therapeutic alternatives. Obviously if providers are allowed to opt out of even discussing those alternatives, we really have to question whether there is even a possibility of real, informed consent.

There also are many medical conditions for which contraception and pregnancy termination can be medically indicated. I think a recent study showed there were 11.7 million prescriptions for potentially teratogenic medications filled every year by women of reproductive age. Now, needless to say those women need access to contraceptives to protect their health.

In fact, you may all know about Accutane. It's an acne medication. The impacts on a developing fetus are so significant for women taking Accutane that the FDA has a program called I Pledge where women actually – and physicians – are supposed to sign in and register. Women are advised, they have to be on two forms of contraceptive, and the FDA says that natural family planning is not an effective method of birth control.

In examples of pregnancy termination, even when there is an intended or a wanted pregnancy, there are times when pregnancies go awry. We know that women with serious cardiovascular conditions, women with lupus, women with epilepsy may face a difficult decision about whether or not to terminate a pregnancy. Premature rupture of membranes, preeclampsia. These are all conditions where women need to get good information, be well counseled, and she and physicians need to make good decisions about whether they want to continue a pregnancy to term by balancing women's health versus the potential for a viable birth outcome. But religious restrictions and refusals take those decisions away from women and away from providers and put those decisions back in the hands of – often in the hands of institutions that are making decisions based on religion and ideology and moral beliefs but that have nothing to do with evidence, have nothing to do with patient-centeredness.

So in conclusion, we just want to bring the conversation back to what happens to patients, real health outcomes, and look at those qualities when we're analyzing refusals.

Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Irum Taqi. Again, if I've mispronounced it, I apologize.

MS. TAQI: Good afternoon. You pronounced it correctly, actually. My name is Irum Taqi. I am Assistant Director of Public Policy at Physicians for Reproductive Choice and Health. Physicians for Reproductive Choice and Health is a national nonprofit organization based in New York City comprised of doctors who support evidence-based reproductive health care for every American. We work with governmental entities, the media, the public, and our colleagues to ensure that all patients have access to quality services as well as the knowledge and freedom to make their own decisions about their reproductive health.

Dr. Anne Davis is an associate professor of Obstetrics and Gynecology at Columbia Presbyterian Medical Center in New York City, and she is also the medical director of Physicians for Reproductive Choice and Health. Dr. Davis could not be here today, so I am going to read an abridged version of her written testimony on her behalf addressing the specific issue of conscientious refusal in the provision of reproductive health care.

“I am an academic obstetrician/gynecologist and specialist in family planning. In my practice, I provide the full range of contraceptive services, including birth control pills, patches, rings, injections, emergency contraception, IUDs, and surgical sterilization. I also provide medical and surgical abortions. I work with women who have commercial insurance and Medicaid, as well as uninsured women. When patients come for consultations, I provide complete and factual information about their options. Some talk to me about reproductive health issues as they relate to the practice of their religion. My practice includes Catholic, Jewish, and Muslim women. Others discuss their moral or ethical concerns. In every case, we decide together on the care that best meets their medical, religious, and moral needs. If they need a service I cannot or will not provide, I refer them to doctors who can. The principles I follow — helping my patients make informed decisions about their health and ensuring that they get what they need in a timely, sensitive manner even when I am unable to provide it — keep people safe. These principles are not unique to me, nor are they radical. They are the underpinnings of the medical profession.

“Yet recently the Department of Health and Human Services (HHS) has threatened to cast these principles aside. The department has proposed regulations that could allow hospitals, doctors, and other health care workers to deny women access to effective birth control, regardless of the consequences for their health. These regulations would protect clinicians who refuse to provide patients with factual information about or referrals for basic health care services like sterilization and abortion and would even protect workers who are not directly involved in patient care.

“The HHS regulations allow healthcare professionals to stonewall my patients whose chronic illnesses make pregnancy potentially lethal by withholding information about contraception or abortion. I am reminded of my patient Sara, an orthodox Jewish woman who has seven children and a diagnosis of breast cancer. In consultation with her husband and her rabbi, we chose an IUD as the appropriate contraceptive method to maintain her health and accommodate her religious beliefs. If the regulations go into effect, women like Sara could be left unprotected and at risk of worsening illness and even death.

“Physicians for Reproductive Choice and Health and I believe that individual physicians may refuse to perform medical procedures that conflict with their religious or moral beliefs. Existing law amply protects this right, allowing individuals to abstain from providing abortion and sterilization services while simultaneously honoring patients' rights to reproductive health care. The proposed regulations, however, would sacrifice the patient's well-being in favor of the provider's conscience.

“Physicians have a professional duty and obligation to tell their patients if their religious or moral beliefs might compromise the patient's access to comprehensive and timely reproductive health care — and yet the HHS regulations make no mention of this obligation. If a physician refuses to prescribe birth control pills, perform a tubal ligation, provide medical or surgical abortions, or discuss emergency contraception, women have a right to know this prior to accepting treatment by the physician. If doctors fail to disclose that they do not provide the range of family planning services, patients might face misinformation, additional costs, dangerous delays in care, unintended pregnancies, and less safe abortions. I have had patients whose medical problems are accompanied by enormous turmoil and pain, and I want to help them as quickly as possible. But the HHS regulations would only make these situations worse, adding to patients' confusion, frustration, and desperation.

“As an ob/gyn, my primary obligation remains with my patients. If I were a neurologist or a podiatrist, I would uphold the same standard. Physicians do not have the right to impose their beliefs on patients.

“Accordingly, physicians who refuse to provide health care must, at a minimum, be required to refer their patients to a doctor who can provide them with accurate information and medical care in a timely, appropriate, and respectful manner.

“Physicians for Reproductive Choice and Health supports the American College of Obstetricians and Gynecologists committee opinion issued last year.

“In conclusion, I'd like to say that women in the United States already face a host of legal, financial, and logistical obstacles in obtaining the full range of reproductive health care. We should make basic health services more accessible, not undermine the doctor-patient relationship and cause harmful delays in treatment.

“The HHS regulations would limit patients' access to medical information and basic services, and my conscience refuses to go along.”

Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Dr. Donna Harrison, President of the American Association of Pro-Life Obstetricians and Gynecologists.

DR. HARRISON: Members of the Council, thank you for allowing me to address you. My name is Dr. Donna Harrison. I'm a Diplomat of the American Board of Obstetrics and Gynecology. I am also president of the American Association of Pro-Life Obstetricians and Gynecologists. AAPLOG is one of the largest special interest groups within the American College of Obstetrics and Gynecology, and I address you on behalf of our membership of 2,000.

On behalf of the AAPLOG membership I am asking the President's Council to consider writing an opinion on three ethical questions pertaining to the attack on our rights of conscience as health care workers: number one, the attack on our right to conscientious refusal to perform or refer for abortions; number two, the use of the power of a professional licensing board to discriminate against physicians who do not comply with a controversial ethical position; and, number three, the use of flawed and biased ethical analyses as the basis for judgment of health care providers' ethical character.

All of these current issues arise from the continuous professional harassment which pro-life physicians experience from the American College of Obstetrics and Gynecology. Now in conjunction with the wording of the new maintenance of certification requirements of the American Board of Obstetrics and Gynecology, I have attached in paper format and electronic format – I've submitted to this council documentation of what I'm saying in this report.

ACOG's effort to eliminate pro-life obstetricians and gynecologists from practicing is long standing. We have been battling the right of conscientious refusal for the last twenty years, as illustrated by the past and current continuous effort to make participation in abortions mandatory for Ob/Gyn residents in training programs. I also experienced very similar harassment as Dr. Christiansen during my residency program.

However, the latest effort has been to officially attack the ethical character of pro-life Ob/Gyns who refuse to perform or refer for abortions. In January of 2008 the American Board of Obstetrics and Gynecology, which is the professional body determining board certification and which should be separate from ACOG, stated in writing that noncompliance with ACOG “ethical statements and principles” would be grounds for revocation of board certification. Board certification is necessary for an OB/Gyn to obtain hospital privileges nationwide.

Despite numerous letters from AAPLOG, pro-life physicians, and organizations across the country, the American College of Ob/Gyn has not rescinded its controversial ethical statement 385, which states that, number one, pro-life physicians must refer for abortion; number two, patient autonomy trumps physicians' conscience; number three, conscientious objections to abortion amount to subjective feelings on the part of the physician; and, number four, pro-life physicians should relocate next to abortionists to facilitate referrals.

As long as ACOG ethics statement number 385 holds and the wording of ABOG's maintenance of certification, which requires compliance at the price of board certification, pro-life ob/gyn's are at risk of bogus accusations of “unethical professional behavior,” and they risk their board certification suspension for years while under “investigation.”

AAPLOG appeals to the President's Council for Bioethics to investigate this abuse of power in the name of medical ethics. We have detailed our concerns and have electronically submitted them to you as well as submitted some of what I submitted electronically in writing. It should be attached.

Thank you on behalf of pro-life obstetricians and gynecologists.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Kimberly Goulart of Compassion & Choices.

MS. GOULART: Thank you, and I apologize ahead of time. I'm getting over a cold.

Thank you, Chairman Pellegrino and Council members. My name is Kimberly Goulart, and I have the honor of working with Compassion & Choices and its more than 35,000 members to improve end of life care options for Americans.  Compassion & Choices is the oldest and largest organization in the country focused on ensuring that Americans have access to the full array of end of life care options, including palliative care, improved pain care, hospice care, and legal aid-in-dying. Compassion & Choices has more than 25 years of experience in advocacy and service. Much of the work we do is accomplished through grassroots efforts of our members and volunteers, who generously give their time and support to strengthen communities through direct service to terminally ill patients and their families.  Compassion & Choices also works with policy makers on the local, state, and federal levels to ensure that the law facilitates an environment where patients are fully informed of all their options and are empowered to make their own decisions about their end of life care in consultation with family and medical providers.

Since its inception, Compassion & Choices has focused its resources on arming patients and their families with the tools to effectively and openly discuss the medical options available to them at the end of life.  As we encountered an increasing number of patients around the country, we have learned that dying patients needlessly suffer due to a lack of essential information. As a result, many spend their last days in agony. Too many patients make one of the most important decisions of their lives – how they will live their final days – without being fully informed of their legal rights and, in some cases, all of their medical options.  Doctors have a responsibility to put the information and power to choose in the patients' hands.

Refusal clauses, sometimes referred to as conscience clauses, can undermine the very basic principle of being fully informed of and having access to all of their medical options.  These clauses allow physicians and other medical professionals to refuse to perform a procedure for moral or religious reasons. Depending on how they are written, these policies can allow medical professionals to refuse to provide a referral to another medical professional that will provide a particular service or even to inform the patient of the option of that procedure.  While these refusal clauses frequently specifically address the religious and moral objections to sterilization procedures and abortion, they are often broadly drafted to extend to any procedure which may be controversial or viewed as morally objectionable.  In the area of end of life care, institutions and individuals opposed to withdrawing feeding tubes, aggressive pain care management, providing support to a patient choosing to voluntarily stop eating and drinking, or to the practice of  palliative sedation  could claim these are objectionable and are thus within the scope of refusal laws.

This is particularly worrisome for patients at the end of life who are often unaware of their options, hesitant to initiate conversations with their providers about certain options, and often unable to remove themselves from their current health care setting in order to seek treatment elsewhere. When dying patients are suffering in the final stages of terminal illnesses, they should be able to receive counseling on a full range of options. This thereby empowers them to make fully informed medical care decisions, including the legal and medically accepted options of refusing life-prolonging interventions, opiate pain management, palliative sedation, and voluntarily stopping eating and drinking.

It is well documented that pain is frequently undertreated despite requests by patients and families.  Some health care professionals, including those at the bedside, have personal and religious beliefs opposing pain relief, even in circumstances in which professional norms require it to be offered. These laws can remove any obligation on behalf of any employee of a health care entity to inform patients of all of their treatment options or to refer a patient to another provider. This very notion of denying patients access to any such information runs afoul to the fundamental healthcare principles of autonomy and informed consent.

Many patients trust their provider to give them the full range of information on all of their end of life options. Refusal clauses that empower providers to deny patients appropriate counseling and referrals leave many patients unaware that their options are even available or that they have a right to seek treatment elsewhere.  At a minimum, we would ask that in order to maintain at least some level of autonomy, patients should have the notice that a facility or provider might refuse to offer information or referrals regarding certain types of treatment based on the provider's personal moral and religious views.

The right of medical professionals to exercise their moral and religious beliefs should not be accommodated at the expense of the right of the patient to have access to a the full array of medical care, and in particular the right of dying patients to be given the information and access to services they deserve to be able at the end of life with as much self determination, peace, and dignity as possible. We at Compassion & Choices will continue to fight to ensure that all Americans have access to the full range of end of life care options, and we will continue to advocate against policies that limit patient access to information or services as they approach the end of life.

I thank you for this opportunity to address the panel.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Sondra Goldschein of the American Civil Liberties Union.

MS. GOLDSCHEIN: Nobody ever pronounces my name correctly, but you did. Thank you very much.

Good morning. My name is Sondra Goldschein, and I am the Director of State Advocacy for the American Civil Liberties Union's Reproductive Freedom Project. As you know, the ACLU is a nationwide nonpartisan, nonprofit organization of more than 500,000 members dedicated to protecting the principles of freedom and equality that are set forth in the Constitution and the various civil rights laws. I thank you for the opportunity to talk with you today about the issues raised when religious belief affects decision making about reproductive health care.

Now, the ACLU has grappled with this question for many years, and it is particularly important to us because of our long-standing commitment to both religious liberty and reproductive freedom. And to give you just a taste of our work in both areas, the ACLU was a founding member of the coalition that supported the Religious Freedom Restoration Act, which is a law to preserve or restore the highest level of Constitutional protection for religious exercise.

Across the country we have a full docket of cases where we represent persons challenging burdens on the exercise of their religious beliefs. For example, we have sued to protect the right of Jewish students to wear a Star of David pendant to school. We have sued to defend the right of conservative Christian activities to broadcast on public access television. We have sued to protect the right of a Christian inmate to preach in his correctional facility.

And we have been equally vigilant in our advocacy of reproductive freedom. The ACLU fought long and hard to persuade Congress to pass the Freedom of Access to Clinic Entrances Act, the FACE Act, to protect reproductive health clinics, patients, and professionals from deadly violence. We have participated in nearly every critical Supreme Court case protecting reproductive freedom, from Roe versus Wade to Planned Parenthood versus Casey to Gonzales versus Carhart.

And when we began to hear stories of religiously based refusals to provide reproductive health care, we quickly realized that we needed to develop a framework for analysis that would protect both of those core values to the greatest extent possible. And I will briefly describe our framework and then offer some concrete examples so you can see our framework in action.

So our framework centers around two key questions. First we ask whether the refusal places burdens on people who do not share the beliefs that motivate the refusal. And second we ask whether the objector is a sectarian institution engaged in religious practices or whether it's an entity, whether religiously affiliated or not, that provides services to the general public. The more that services are made available to the general public and the less the services relate to an institution's religious mission, the less acceptable an institution's claimed right to refuse.

What does this mean in application? Let's start with an individual health care provider's refusal. We think that an individual health care providers' refusal to provide a health service should be protected, but in order to lessen the burden on the patient, that individual health care provider should be required to give complete and accurate information, to give appropriate referrals, to effectuate informed health care decisions, and to provide care in an emergency. That is a true balance for us between reproductive freedom and religious liberty. And the same can be said of institutions whose primary purpose is to practice and teach religion, like temples, churches, and mosques. Those institutions should not have to provide health care coverage or health care that violates their religious beliefs. But when institutions, such as hospitals, health care plans, pharmacies or other corporate entities serve and employee diverse populations, their refusal can impact a wide number of people who do not necessarily share their beliefs. So when those institutions move into the public world, they have to play by public rules.

So some real examples. We believe that a doctor, nurse, or pharmacist who cannot in good conscience participate in abortions or contraceptive services should be allowed to refuse so long as a patient is ensured safe and timely alternative access to treatment, but a hospital shouldn't be able to refuse to provide emergency contraception to a rape survivor. A hospital employs people of diverse faiths, and it serves people of diverse faiths.

A church, though – an opposite – should not have to purchase contraceptive coverage for its employees, but an administrative assistant that's working at a Catholic university or a Catholic hospital shouldn't have to pay for her contraceptives out of pocket. So the factors that we identified, those two questions, will lead to these kinds of fair results.

And so I just want to briefly say that based on this framework, we've looked at the proposed HHS regs, and we do not think that those regs provide an adequate balance of reproductive freedom and religious liberty. The proposal suggests that religious refusals should trump patients' basic health care needs, and we do not think that's an appropriate balance of religious freedom and reproductive rights.

So thank you for your time today, and we recommend that the Council advocate for solutions that appropriately balance patient access to health care with religious liberty, and we have a report that I have back there if anyone is interested in learning about this framework in more detail. Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Our next speaker is Jonathan Imbody of the Christian Medical Association.

MR. IMBODY: Thank you, Dr. Pellegrino, and thank you, members, for staying around to hear from the grass roots. I appreciate that and postponing your lunch to do so.

The argument has been advanced that protecting the civil rights of health care professions will somehow decrease patient access to health care. In fact, the opposite is true, and an email recently received from a medical student helps illustrate why. Medical student Trevor K. Kitchens writes: “I am a first-year medical student in the beginning stages of deciding which specialty I would like to pursue. I am currently very interested in OB/GYN, but I am afraid of the relationship between this field and abortion.” Then he adds, “By the way, I am a hundred percent against abortion, and there is no way I would perform one. Moreover, there is no way I would tell a patient that abortion is an option under any circumstance, because I do not believe it is an option.”

And then he continues, “My concern is that I will start a residence and would subsequently be required at some point to give a patient the option of abortion, which I would refuse.” And Trevor says, “My fear is that taking this stand would cost me my residence position.” Now, if that is what it comes down to, he says, “I will be glad to take the stand for Jesus Christ and give up my position. However, I would really like to be able to avoid this situation and complete my residence so that I could go on and serve the Lord in that field.”

Now, Trevor is a medical student whose life-honoring values are consistent with the long-standing medical tradition of Hippocrates. Yet he senses that his life-honoring views will ironically disqualify him from a profession in obstetrics and gynecology because of the climate of discrimination, heavy-handed politics, and coercion in that field.

Well, Trevor 's fears seem well-founded. We've heard about the ACOG and the ABOG statements, which would essentially make obstetricians choose between following long-standing medical ethics codes or losing their board certification and essentially their careers.

Two out of five of the members of the Christian Medical Association report being pressured to compromise their adherence to ethical standards. Residents report losing clinical privileges for refusing to perform abortions. Physicians report losing their positions for refusal to participate in life-ending prescriptions and procedures.

Well, as life-honoring medical students, residents, physicians and other healthcare professionals are systematically forced out of the field of obstetrics and gynecology, their loss ultimately impacts patients. Their loss will impact life-affirming pregnant women who specifically seek physicians, as my wife did, who share their views and do not participate in abortions. Their loss will especially impact poor patients, since faith­-based and other conscientious physicians and institutions are among the most likely to be caring for the underserved. And their loss will impact the medical community, which is enriched by the reminder that time-tested objective standards of medical ethics protect patients and constrain the physician to first do no harm.

Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Our final speaker is Dr. Karl Benzio of the Christian Medical and Dental Association Lighthouse Network.

DR. BENZIO: Thank you very much, Chairman and Council. I am honored and humbled to be able to serve here today.

Right of conscience versus right of convenience. We are here because certain groups want to perform procedures or enact processes that are unconscionable, unethical, and convenient. They need to remove conscience in others, which they can't, or legislate against conscience to advance their agenda. There is so much evidence against this abolition of conscience from medical practice, I am going to present a few of those arguments.

Starting with the Hippocratic Oath, certainly in 400 B.C., there was erosion of health care, the doctor-patient relationship, and the action of physicians. Hippocrates made a moral pledge to his gods and to society to do no harm by not being complicit in abortions, killings by physicians, or breaking confidentiality.

Second point is, if you strip conscience rights, it's a mixed message to physicians. Society, professional organizations, and law makers want physicians to have a conscience, values, morals as evidenced by Stark laws that legislate against kickbacks, self-referrals, and other financial incentives that would potentially interfere with patient care. There's legislation that polices pharmaceutical and medical device company incentives for product use. There's rules against sexual conduct with patients. There's whistle blower protection laws against people that express their conscience.

Probably the most egregious event was Auschwitz where, because of unconscionable and unethical methods, we had a very hard time accepting all this unbelievable science that we garnered due to the horrible ways that we were able to come upon that evidence. Now, telling me that I can't practice because of my conscience sort of goes in the face of these other examples and messages.

We certainly want doctors that have a conscience and use their ethics, morals, and principles. If we were in a car accident an unconscious, we would certainly want a physician to be taking care of us that would have morals, values, and a code of conduct to be able to treat us. We wouldn't want financial incentives, insurance interests, medical device companies, research results, fame, political gain, or other people's finances or needs to interfere with a decision-making process that would be ethical and appropriate.

As a teenager in Northern Jersey as an Italian with friends involved in organized crime, I was approached to go to medical school for free, residency for free, undergrad for free, and have a very nice practice. In response, I would be able to give certain care to their constituency as well as cover up mistakes. Interestingly, they approached me because of my trustability, then asked me to practice unconscionably as a result.

When physicians do lethal things, it erodes the trust that doctors and patients have in each other. It interferes with the openness of communication that patients can have. It also opens the door wide open of the slippery slope that lead to other, more egregious behaviors in that, as Dr. Pope presented, that bubble of intractable cases grows and grows and grows larger.

To get an idea of what happens when you remove ethics and conscience from a profession or system, we just need to look at the terrible state of affairs of or legal system, where the goal is pursuit of truth and honest discourse, but there's laws and different elements that preclude against the evidence and the truth being presented clearly and openly. As a result, people don't trust lawyers, the legal system. There's ridicule of the system and attempts to circumvent the system. I would not want to see that happen to our medical system, which unfortunately is heading in that direction and/or some of those elements at this point.

The government is also another system where conscience is sometimes missing or at least perceived to be missing, and we see the contempt and the apathy by our society with regard to the government situations.

As far as my personal practice, I am a psychiatrist. As a parent we know that giving things isn't always the compassionate and loving thing. To give the 12-year-old the keys to the car certainly is not the loving, compassionate thing. As far as abortion, doing the compassionate, loving thing isn't always complying with the request for an abortion. I have treated women that have had abortions. I've treated fathers of aborted children and dealt with their sequelae of post-traumatic stress disorder and depression and suicidality.

Giving emergency contraception is another one of those convenient things that isn't necessarily the loving and compassionate act. I've treated rape victims that have had abortions and the negative outcomes from that. I've treated rape victims that have carried their child and have wonderful experiences with loving that child, the child loving them, and the trend is growth that happens relationally, psychologically, and spiritually by trying to figure out, well, why did this happen, then, if I had this positive outcome?

We talked about patient-centered medicine, but as a psychiatrist I unfortunately impose my conscience on patients at times because I stop them from committing suicide. That's their wish, and I either commit them or hospitalize them against their will to stop them from imposing what they would like to do. We're also called by law to – the Tarasoff law to stop people from killing others, and the duty to inform is again imposing my conscience on theirs.

Certainly legal commitments to hospitals and psychiatric settings again is me imposing my conscience. Finding people incompetent to then undergo procedures that are presumed in their best interest is another area where we impose our conscience values over the requests or the process of the patient.

People want to go to physicians with similar beliefs. Especially as a psychiatrist we're involved significantly in their decision-making process, in the values that move their life forward. So I had a patient referred to me who wanted to have an abortion or was on antidepressant, got pregnant, and her psychiatrist told her that she needed to have an abortion. And she was able to find me out through her church, and we were able to see the pregnancy through, a very healthy, very wonderful result.

Another patient was referred to me and was being called psychotic by their psychiatrist and was on medications that they didn't need to be on because the psychiatrist didn't understand their ability to communicate because of their faith, which some of this phenomena was.

Many patients haven't pursued addiction or mental health treatment because of the fear that the care they get or the counsel they get will be contrary to their beliefs regarding sanctity of life, marriage, and that man is made in three spheres, and all three spheres of spirit, mind, and body need to be addressed.

There is also much from a scientific standpoint that I won't be able to go into now because of time, but there is much information and evidence about SPECT scans. The evidence of SPECT shows us about the need for morals and values in decision-making and effective decision-making on brain chemistry and healthy brain chemistry production.

In summary, the conscience rights are the last wish for those who can't speak for themselves, such as unborn babies, the mentally retarded, terminally ill, disabled, incompetent, elderly, the unconscious, mentally ill, slaves, illegal immigrants, or those ignorant of the complicated system.

Society and our U. S. Constitution originally taught us to protect that voice, and physicians are often the last audible voice. Taking away conscience rights silence that voice. Please don't, because some day that voice could be the last advocate and morals between you, your spouse, your parents, your kids, and inhumane, unconscionable, and unethical actions or policies.

Thank you.

CHAIRMAN PELLEGRINO: Thank you very much. Thank you very much, Dr. Pope. Thank you to the members of the Council. And we will adjourn our meeting. Have a good trip home.

  - The President's Council on Bioethics -  
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