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Thursday, November 20, 2008

Session 3: Medical Futility

Susan B. Rubin , Ph.D. The Ethics Practice, Oakland, California

CHAIRMAN PELLEGRINO : [Everyone is] arriving on time, or at least moving in the direction of the Council meeting. And as long as the trajectory is in this direction, we'll go ahead.

I'm going to start with our first speaker this afternoon. We're continuing our discussion of the subject of futility. And our next speaker will be Dr. Susan Rubin, who is in [an ethics consultation] practice from Oakland, California , and I might add, if she'll allow me to, a graduate of Georgetown. And we're glad to have you here. Susan, it's all yours.

DR. RUBIN : Thank you so much. It's a pleasure and honor to be here today. And I want to thank especially Dr. Pellegrino and Dr. Davis and council members for the opportunity to discuss with you what I find is one of the most challenging ethical dilemmas that we face in the clinical setting today: How healthcare professionals respond when patients or surrogate decision-makers request treatment that the professionals view as futile, when there is a conflict over the values and goals that ought to guide treatment.

It's a particular pleasure to join my esteemed colleagues, Larry Schneiderman and Bob Troug , who both have made such important contributions to this debate. And it's a treat to be back in D.C. As Dr. Pellegrino mentioned, this is where I began my own systematic study of ethics and bioethics under the guidance of Dr. Pellegrino and others at Georgetown and the Kennedy Institute of Ethics. So thank you very much for the invitation to be with you today.

Contrary to the impression I get — and you might have had, as well — from reading the academic literature on futility, I want to share with you from my vantage point as a front-line clinical ethicist, I am finding that the concept of futility is alive and well on the clinical front lines despite the fact that the underlying conceptual and practical issues surrounding its use are anything but resolved. I want to argue today that the concept of futility cannot do the work its proponents think it can, and further, that the answers to their concerns do not lie in futility policies, futility professional position statements, or even in futility statutes. Instead, what we need and what has been sorely missing in the futility debate, is frank discussion of the underlying values and goals themselves that are in conflict when a patient or family insists on a treatment that the healthcare team thinks is futile. And what we need is a genuinely fair process for addressing such conflicts when they arise.

I was thrilled to get the invitation to come and present to the council because it signaled to me that you too shared my sense of the importance of this issue. And I am really hopeful that you in your discussion, and perhaps even recommendations, on this issue will be able to have an impact on the future direction of the futility debate and on our understanding of an approach to so-called futility cases at both the clinical and public-policy levels. So I'm really, really happy to be joining you in the conversation.

Let me give you a sense of where I'm going to go today in our time together. First I want to describe the impact that the concept of futility is having on communication and decision-making in the clinical setting. Then I want to outline the fundamental problems I think are associated with the appeal to the concept of futility. Third, I want to offer what I find a more fruitful and defensible approach to so-called futility conflicts. And last I want to highlight the unresolved issues in need of public discourse and which could benefit tremendously from the council's input.

It wasn't long ago — and we got a sense of this from Bob Troug's presentation — it really wasn't long ago that patients and families were struggling to assert their right to say no and finding themselves in conflict with healthcare professionals who felt a very strong moral obligation to continue what the patients and families would describe as unwanted or unduly burdensome treatment.

Now the roles are reversed. And it's almost as if the scripts that the patients and families used to say were handed over the table to the physicians and healthcare professionals, and the scripts, the things, the arguments that healthcare professionals used to make were handed over the table to the patients and families, and they're now making their counterpoint's arguments. We can see this as we notice the shift in the fact patterns in the evolution of cases from the Karen Ann Quinlan case to Cruzan and more recently Terri Schiavo, on the one hand, which represent in my mind, really, the first paradigm case in foregoing life-sustaining treatment in bioethics, and then moving to what I want to identify as a new paradigm case in foregoing life-sustaining treatment characterized by a few cases you've heard referenced to already today, the Wanglie case, the Baby K case, and the Gilgunn case.

Now, thanks to the first line of cases, even though at the margins we may not have perfect compliance, I would argue we now have pretty broad consensus about what to do when a capable, competent patient voluntarily asserts her right to say no to a treatment against the recommendations of her physicians, or when her surrogate decision-maker does so on her behalf. That's the first paradigm case.

I want to argue, contrary to the impression one might have from reading some of the futility literature or listening to the proponents of the concept of futility, I don't think we have the same degree of consensus. In fact, I would argue we have very little consensus about what to do in the counter case, the subject of our discussion today, when it is not the patients or surrogates but the healthcare professionals asserting their right to say no.

Now, at stake in both of these paradigm cases is the weight that should be accorded to a physician's assessment of what is best for her patient and what that physician ought to be authorized to do based on her value assessment. I want to argue the answer's pretty clear in the first paradigm case. We understand that physicians cannot impose their values on patients and force unwanted treatment on them.

The second paradigm case — and I want to acknowledge it's not the exactly flip side — there are some important philosophical and conceptual differences. The second case admittedly turns on a patient's request for treatment. And we'll, I'm sure, get into a discussion about that. But still, it's not evident to me why in this newer paradigm case around foregoing life-sustaining treatment, why we are hearing arguments that physicians ought to have any more warrant to impose their values on patients than in the first line of cases.

So what we see in this new line of cases is a new face to an old conflict. Really, there's been a shift in who's saying no, and there's been a shift in the approach that is recommended that is appealed to in decision-making. What we see now, contrary to the first paradigm case, where healthcare professionals were generally guided by the technological imperative, "If we've got the technology, we ought to be using it. There is an obligation to use all available means," and when healthcare professionals were guided by an acute sense of an obligation to save life, to preserve life.

Now instead we find healthcare professionals being convinced that they're justified in making unilateral — and, yes, I do use the word "unilateral" to describe this perspective — unilateral decisions to withhold or withdraw treatment they deem futile even over the objections of patients and families. And I want to give you a really clear sense from my clinical vantage point of what that actually comes down to, what that actually means. We are having, and I see routinely in my clinical practice, physicians argue that they have a right to deny treatment based on their assessment that the treatment is futile and over the objections of the patients and families, even when the patients and families are guided by a very different set of values and goals, even when patients and families may have a very different interpretation of the clinical facts, a different idea of risks worth taking, lives worth living, a different sense of what constitutes harm and benefit, the cornerstone of the physician's obligation to do good and to avoid or minimize harm. These patients and families have a very different sense, a different definition of what's beneficial and harmful to them. They also may have a different sense of what would constitute a good or an acceptable outcome. They may have a different valuing of cognitive capacity, a different vision of a good death, or a different perspective on the relative importance of sanctity versus quality of life.

Now, despite the fact that patients and families embroiled in futility conflicts come from these different perspectives, physicians are in the habit of saying, "If this treatment's futile, then I have no obligation to provide it," even though the term and its applicability are in fact highly contested. We can't blame them. Their professional societies have told them as much. Some of the professional societies have position statements that go so far as to suggest it's not something that the physician even need discuss with the patient or family or even need to get their consent for. The dominant view is that these are ultimately medical decisions, medical determinations, that should be made by physicians on behalf of the patient. The problem is, these decisions all turn fundamentally on values. And there's a conflict between the physician's values — and I want to argue not just the individual physician, but perhaps in some instances the medical profession at large — and the patient's values or the lay population's values.

So part of the question the futility debate calls on us to examine, and what I look forward to discussing with you today is, how do we want to respond to genuine conflicts of value when they arise in the clinical and public-policy arenas? And these are the questions to which we now turn.

I think the core questions at issue in the futility debate really are, who should decide when to stop and when to proceed with treatment, what sort of values and whose values should be determinative, and what kind of decision is it anyhow, a medical decision or a moral decision?

Now, how we each answer, particularly this last question, really reveals which side of the futility debate we're on and why. If we think that the decision about whether to go forward with treatment or whether to stop is an exclusively medical decision, then it makes absolute sense to assign decision-making rights and responsibilities to the physician. The physician should be able to set limits based on their assessment of medical futility. But if we think it's primarily a value decision, we're going to not be so comfortable with physicians unilaterally overriding the patient's value perspective.

Now, I'm going to come back to this next point later, but I do want to say at the outset, lest I be misunderstood on this point, I do want to clarify that by posing the question in this way, I am not by any means suggesting that medicine is devoid of moral values.

DR. McHUGH : Thank God.

DR. RUBIN : Thank God, right. Rather — and I want to be careful about this, and I'll have to argue this, and I'm prepared to do so — rather, I am signaling the need to highlight the value dimension of decision-making and the moral values on which a physician's recommendations depend. So we'll get back to that point in just a little bit.

Now, in the current climate, the answers heard most often to these core questions are that physicians should be empowered to decide when to stop and when to proceed because it's ultimately a medical assessment, a medical decision, not a moral one. It wasn't that long ago that we were answering the question differently. And I really take tremendous guidance from the Imbus and Zawacki article which Dr. Schneiderman referenced as well. Imbus and Zawacki wrote this very important article in the late '70s in the New England Journal of Medicine, and it was entitled, significantly, "Autonomy for Burned Patients When Survival is Unprecedented."

Now, they didn't use the word "futility." It preceded the current futility debate. But they were talking about a similar fact set. When no one has ever made it with that particular degree of total body burn, what do you do? What values ought you be guided by? And it's significant that they entitled their article "Autonomy" for patients in that condition, not "beneficence or nonmaleficence," try to do good, try to avoid or minimize harm from the vantage point of the physician's value; and not "justice," not be careful about the just allocation of our limited healthcare resources.

They argued quite differently from the argument that we hear today and that we heard from Dr. Schneiderman, that the decision about whether to go forward with full aggressive measures or to pull back and pursue comfort measures, or what we now call palliative care, was fundamentally a moral decision and not a medical decision, and they developed a protocol around that conviction. So what they did is, when a patient came in with that specified certain degree of total-body burn, they didn't presume that their knowledge of the medical facts and statistics ought to entitle them to know what the right course of action was. Rather, they argued it was imperative to engage the patient in dialogue, a very different approach than many of the position statements on futility take today. They argued that they needed to engage in dialogue with the patient and fashion a treatment plan around the patient's values and goals.

Now, like William Knaus, the developer of the APACHE scoring system, they argued quite explicitly that the medical facts themselves and all the outcomes data in the world couldn't tell you what the right thing to do in a particular patient's case was without knowledge of the patient's values and goals, a very different understanding and definition of medical indication and contraindication — [you] cannot come to a conclusion about what's medically indicated or contraindicated based on the science and the medical facts alone. You need to get the values data about the patient to understand what the patient's goals are and how they would value different potential treatment courses.

They understood — and I want to call for a return to this — Imbus and Zawacki understood the need to bring the values data into conversation with the medical data, the "S" and the "O" from old SOAP notes that medical students learned originally. The "S" is the subjective, the "O" is the objective; you can't make an "A," an assessment or a plan with a "P" unless you bring the "S" and "O" into conversation with one another. And that's exactly what Imbus and Zawacki advocated for, and that's what they did.

They would enter into conversation with their patients. They told them everything they knew clinically. They assumed — and this is really significant, and something I don't see routinely happening — they assumed a posture of curiosity in these conversations and an openness to hearing how the patients valued and interpreted the medical data.

Now, the majority of patients in the Imbus and Zawacki study chose what we would now call palliative care. But a few of them chose full aggressive measures, saying things like, "I don't want to go gently into the night. Isn't that a defensible viewpoint?" Or, "I've always been the one to beat the odds. I want to take the chance; I want to buy that lottery ticket." And for those patients — and they were the exceptional, rare patients, as I will suggest would be the case in our current futility dilemmas — for the rare patients who wanted the full aggressive measures, they agreed to provide it.

Now, this approach is not so antiquated; it's not such an anomaly. It has and should continue to be the practice of medicine to take into account the subjective values and goals of patients to determine what treatment plan would be most appropriate for them.

I like to use an example of two women diagnosed with the exact same metastatic cancer. Everything about their cancers is identical diagnostically and prognostically. What's really different is their values and their goals. We could describe one of these women as having cared for several family members with the exact same kind of metastatic breast cancer. She knows exactly what she's up against, she knows what it looks like, she doesn't want to take the first step down that path. She would rather choose to have a shortened lifespan than endure the burdens of the treatment that she saw up close and personal with her family members. She wants to die quickly and peacefully.

The other woman with the exact same diagnosis and prognosis is awaiting the birth of a first grandchild seven months away, let's say. She's willing to endure anything just to get to that point. However horrific, however burdensome, it doesn't matter; she has a very clear goal.

Now, these two patients, I would argue, would appropriately be treated differently based on their different values and goals. For one, palliative care would be appropriate, just like the vast majority of patients in the Imbus and Zawacki study. But for the other full-court press would more likely serve the values and goals of the patient. That's what we call shared decision-making, not unilateral decision-making.

Proponents of futility would have us move away from that model of shared decision-making. They would presume that we can make uniform assessments of which treatments are indicated and contraindicated irrespective of the goals and values of the individual patient. They assume that the goals and values of medicine are universal and determinative. Now, we see this in the futility position statements, in futility policies, in futility statutes. What they all attempt to do is carve out an exception to the existing framework for decision-making.

Now, generally in our country, and somewhat uniquely so, patients and surrogates are understood to have a central role in the decision-making process. There's a fundamental right to informed consent or informed refusal. We would present the capable, competent patient with their diagnosis and prognosis and treatment options, and we would engage in discussion with them, and we would allow them to choose to pursue or reject the clinician's recommended treatment course, and we would allow their surrogate decision-makers to do that on their behalf. What we have found in the futility debate is physicians arguing, yes, that's true unless the treatment's futile. We're carving out an exception to the already-established framework for decision-making. But the key question, of course, is, futile from whose perspective and according to whose definition?

The other thing that's really striking about the way in which our answers have shifted from shared decision-making to professional position statements, hospital or community futility policies, and futility statutes is that, unlike the open-ended approach, the posture of curiosity advocated by Imbus and Zawacki, in a lot of these other approaches in the position statements or policies or the Texas statute there's a foregone conclusion, which is not our typical way of responding to a genuine ethical dilemma, a genuine conflict of values. There's a foregone conclusion that if the patient and family persist in requesting futile treatment, bottom line, the physician will ultimately prevail. The family, the patient, will lose. Now let's take a look at actually how that works.

There's been a number of professional position statements, and I've described them in the article that you received in advance. But as you know, The American College of Chest Physicians and The Society of Critical Care Medicine, way back in 1990 came out with a recommended stance for their physicians. The American Thoracic Society has weighed in; The American Medical Association has weighed in twice; The Society of Critical Care Medicine [has also weighed in].

And what I think these position statements all have in common are these three points: They work very hard to stipulate the goals of medicine and the scope of professional obligation; they share in common an assertion that there's no obligation to provide futile treatment; and now, in contrast to the very, very early professional position statements which actually talked about not even needing to discuss or inform the patient, most professional societies have dispensed with that and have acknowledged there is at least a duty to make what is called in the literature "courteous disclosure" that the physician feels that the treatment is futile.

And now most of the professional societies have moved in the direction of recommending procedural solutions. We can't get the answer on the substantive level, so we're going to move to a procedural approach.

So some additional things that I think are worth noting here are, when you read each of these professional position statements, and particularly reading them one after the other, what becomes really evident is the degree to which they all depend on the correlativity theory of rights and obligations. You can't have a right unless someone else or some entity has a correlative obligation to meet the right. So what I've noticed as I look at these professional position statements is that they each quite deliberately define the obligation of the professional in such a way as to inevitably knock out the right. So the obligation is defined in a narrow way so there won't be a right of access to patients who have a different perspective.

There also is in the professional position statements a resistance to the idea — and I think this comes largely as a contribution, Larry , that you and your colleagues Drucker and Johnson made — to produce — the idea that there is an obligation to produce an effect which they don't think is beneficial. There's a resistance to that. We don't have obligations to just make things happen in people's bodies; we have an obligation only to do things that are actually going to benefit patients. And you'll see that throughout the professional position statements.

Let me just read one, which is also in the article from The American Thoracic Society. And this is, I think, really thematic. You see this kind of approach in the other position statements as well.

"The purpose of a life-sustaining intervention should be to restore or maintain a patient's well-being, and it should not have as its sole goal the unqualified prolongation of a patient's biological life."

Now, they don't address the fact that the very effect of prolongation of life is a goal some patients would define as tremendously beneficial and absolutely serving their well-being, even if they can't appreciate it on a cognitive level. Now, it characterizes, this statement and so many others like it, is a conflation of the physician's role, from telling us what treatments are effective, which I would concede as properly within the scope of medical expertise, to telling us what treatments will be beneficial, which I would say is beyond the scope of the physician's expertise. This is one of the fatal flaws in the appeal to futility, which I will return to in just a bit.

So that's a little description of the professional position statements. Let me say a few words about these hospital futility policies. They follow a remarkably similar format. And here is the basic template: There now in most policies is the instruction that the physician can't do this secretively; they need to actually tell the patient. So this is good. Step 1, if you think a treatment's futile, you got to say it, you have to disclose it to the patient or their surrogate.

If the patient or family disagrees, offer a second medical opinion. That's in most of these policies. And if the patient or family still disagrees, bring in the other resources of the hospital. Try social work, chaplaincy, even ultimately the ethics committee.

And finally, if the patient or family continue to disagree, offer the opportunity for them to find some other healthcare professional who's willing to take on the case for transfer, or tell them they can go to court if they disagree.

Now, these templates that are used I think by many hospitals I think have some fatal flaws, and I just want to reference a few of them. They strike me as surprisingly imbalanced. Every step along the way, the language in these policies that I've reviewed suggests if the patient or family persists in their disagreement with the physician, here are the next procedural steps to follow. I've never seen a policy that says if the physician persists in her disagreement with the patient or family, here's the recourse that the physician can follow. I've never seen a policy that says if a physician feels so strongly that the treatment is futile and the physician persists in her disagreement with the patient, the physician can go to court, the socially sanctioned arbiter for intractable conflicts in society, and let that body which actually has the power to adjudicate render an opinion. That is — the imbalance is I think a significant problem.

Another significant problem — and others have noted this — is these final options — and we see this also in the Texas statute — the options of transfer and court are just not realistic options for most patients. And it's not just because physicians might tend to see this in similar ways and it might be hard to find a willing provider. I don't know about you, but where I come from, people can't just go to any doctor they want or any hospital. It's not the way our private insurance system works. So there isn't really the opportunity for free access that this would suggest.

We've already heard some about the Texas Advance Directives Act, so I'm not going to make much comment here. What I want to do is to suggest it follows the basic standard template of the hospital policies, but it adds an additional step; it adds the step of immunity. It gives the physicians immunity if they follow this policy.

Now, Bob Troug has already noticed this. The statute explicitly directs the courts to not consider the actual substantive dispute itself, to not comment on the question of is the treatment futile or not. They are only authorized to comment on whether successful transfer would be likely if additional time was granted.

We've already heard some of the problems with that use of the ethics committee, no specification of the composition, the skill of the ethics committee, or the nature of the ethics committee review process. There's also real concerns about bias. And we've heard already about how many times the ethics committees have actually sided with physicians, and the kinds of patients and families who tend to be differentially impacted in futility dilemmas, the absence of a meaningful appeals process. All of these I think should give us significant pause and not to mention the fact that this statute has been at risk of being repealed numerous times. So I don't think that we can hold it up as an example of emerging social consensus on the proper resolution to futility conflicts.

So, again, just to underscore the point, what all of these different approaches — the futility position, professional position statements, the policies, hospital or community policies on the statute — they all have in common this attempt to carve out an exception to the existing framework for decision-making. If it's futile, the physician ultimately gets to not just say no, but the physician gets to impose no.

So a heck of a lot is riding on this word "futility." And there's been lots of discussion in the literature about the fact that there's no agreed-upon definition. This has even been more recently in professional position statements actually acknowledged. The AMA statement in 1999 acknowledged a fully objective and concrete definition of "futility" is unobtainable.

Why is this the case? Futility is an instrumental concept. It all depends on the goal, the end we are seeking. It can never be defined in the abstract or without reference to the goal. And keeping that in mind, I think it should give us pause to consider the tremendous opportunity for bias. We already know there is a growing empirical literature on health disparities in this country. There have been studies that have clearly demonstrated patients being treated differently based on demographic factors of race and gender. They present with the exact same diagnosis and prognosis, and there's differential treatment of patients. We see this in studies showing bias about diagnosis.

There was a study in the early 90s out of UCSF showing that patients with AIDS or lung cancer were more likely to receive DNR orders than patients with cirrhosis or severe congestive heart failure, even though they had nearly identical prognoses. The physicians perceived these patients and these diseases differently, and they made different clinical judgments about the appropriateness of DNR.

So I'm worried. Once we acknowledge there's no agreed-upon definition, I'm worried about what factors will lead physicians or the medical profession at large to define a treatment as futile or not futile.

There's also a tremendous risk, of course, of uncertainty. I've seen futility judgments turn out to be wrong in so many different cases. Now, not only is there no agreed-upon definition of futility, there's also no agreed-upon — there's no agreement on the goals. Who ought to select the goals? Whose values ought to prevail?

Now, Dr. Schneiderman and colleagues Drucker and Johnson have argued that the goal of medicine is not merely to produce an effect, pretty powerful argument. They suggest there has to be a benefit, and they've added it has to be a benefit that can be appreciated by the patient. On this basis they define as futile continued treatment for a patient in PVS precisely because such patients are incapable of experiencing the effects of the interventions, and for patients who can't survive outside of the ICU, or now the acute-care hospital, patients who are permanently dependent on intensive medical care. But it's not at all clear that these treatments are futile or that the patients or families would view them as such. And I would argue it certainly can't turn exclusively on the scientific facts. It has to turn on the goals and values one has. Is getting out of the hospital the most important goal? It better be if we accept these criteria. Is being unconscious always a deal-breaker? It better be uniformly and universally if we accept these criteria.

And I am concerned about the slippery slope. You've mentioned, Larry , that you were very careful just to have PVS and not dementia. But I have seen the hospital policies, and you know those of which I speak, [which] are modeled after the Schneiderman, Drucker, Johnson approach and have expanded these criteria to include patients with dementia, with severe dementia. So I'm worried about what this means.

Futility is inescapably an instrumental concept. It depends on the values and goals that we have and the ends that we seek. Which brings us back to the fundamental question: Whose goals, whose values ought to guide decision-making, and what ought we do when the patient's and physician's goals conflict? And here we have to acknowledge the goals and values of healthcare professionals don't necessarily correlate with the goals and values of the broader lay population who may tend to be guided more by faith than science, who may tend to rate the importance of productivity and cognitive capacity differently, and who may be willing to accept greater degrees of impairment or dependence.

Even if patients deferred to their physicians' goals, even if there was agreement between the goals of the lay population and the goals of the medical profession, that's not going to solve this problem because the goals on which physicians rely themselves conflict. The traditional goals of medicine, preserving life, curing disease, restoring function, alleviating suffering, they may conflict when applied to a particular case. And the goals that are explicitly stated or implicitly relied upon in the futility position statements or policies may conflict as well. In fact, there's nothing in medicine, per se, that can tell us how to prioritize the goals of medicine or which to select in a particular situation. Better to preserve life or alleviate suffering? There's nothing in medicine that can give us the answer.

Now, this highlights the fact that there's always a value choice to make in deciding on a particular treatment course, and it brings us back to that ever-vexing question, whose choice ought it be? As it stands now, value choices are being made without being explicitly named. And this is a tremendous problem both clinically and on the public-policy level.

Let me give you one case in point. There's a whole literature on CPR and whether CPR is effective or futile in patients with metastatic cancer, with unwitnessed arrest, babies of a certain birth weight, and the list goes on. And there is clear empirical documentation of when we cross the threshold and when an attempt at CPR is futile.

Now, if you look really carefully at this literature, there is a uniform implicit assumption about the definition of futility, and there is an implicit selection of a particular goal informed by particular values. The goal that is measured to determine whether CPR, attempts at CPR, were successful or not is whether the patient was successfully discharged to home. In none of the studies are they measuring did the attempt at CPR restore heartbeat. So there is an introduction of a new value perspective without adequate exploration as to whether that would be an appropriate end or goal.

I was involved in a discussion just last week, as it turns out, involving an 83-year-old woman with a history of bradycardia, slow heart rate, renal failure, a stroke from — she had a very difficult brain hemorrhage, pneumonia, and anoxic encephalopathy. So she had suffered some significant damage to her brain from a loss of oxygen secondary to a recent cardiac arrest.

Prior to this her physician had placed an AV fistula in anticipation of needing to start dialysis. That was before the arrest. Now she's in intensive care and the staff is up in arms. So I was doing my regular ethics rounds with this clinical team, and passions ran strong, as they always do in these cases. There was a profound sense of outrage and indignation that dialysis might even be considered.

Here's some direct quotes from the physician: "What would be the purpose of dialysis? It won't add anything meaningful except to prolong her life. Dialysis will be of no benefit. It will have no meaning. Dialyzing this patient would be tantamount to malpractice." Direct quotes.

The physician saw the question as clear-cut. There was no ambiguity; there was objective scientific fact. They had a hard time seeing that a particular set of values and goals were operative in their declarative statement and that those might be values and goals the patient wouldn't share. For the physicians, dialysis wouldn't make sense. It could only produce an effect on her kidneys. It would have to offer the possibility of what they would define as real tangible benefit such as waking up, being able to interact with her environment, being able to demonstrate some baseline cognitive capacity.

But is that how the patient would have defined "benefit"? Were those her goals? Are those the minimum conditions she would have set? Would she have agreed with the physician's assessment? Obviously prolongation of life might be extraordinarily meaningful to the patient. She might have viewed continued life as a unqualified benefit. She might not have put the same premium on intact neurocognitive capacity or relatability. But to the physicians it was absolutely clear. Dialysis would be futile and should not be offered. There was nothing more to discuss. This family just needed help understanding this objective truth.

Given the possibility, in fact, even the likelihood, of conflicting goals in so-called futility cases, a key corrective is always to ask, "Futile with respect to what goal?" and "Whose goal is it?" And there should and will always be an important role for physician judgment and input, but as part of the equation, not as the presumptive solution.

Larry Schneiderman and colleagues have great insights, and they're absolutely appropriate to share in dialogue with the patient or family, but they cannot be the start and end of the conversation. In my experience, physicians and other healthcare professionals are often too quick to label treatments as futile and meaningless before they have a chance to learn more about the patient so that they can effectively bring the "S," subjective, into conversation with the "O," objective, rather than entering into the conversation with a posture of curiosity like Imbus and Zawacki. I hear physicians make sweeping declarations that shut down the prospect for a meaningful exchange. Time and time again I've seen families dig their heels in when they hear a doctor say there's no point in continuing; this treatment's offering no benefit; this treatment is futile.

These statements are present as self-evident truths, not as the physician's opinion based on her particular values or goals or the values and goals of her profession. It's not to say that physicians shouldn't have an opinion or that the medical profession isn't fundamentally a moral enterprise with its own foundational moral commitments, or that there isn't a place for moral assuasion in the clinical encounter. There absolutely is, particularly if the physician feels the treatment in question is causing harm. But when physicians express their opinions, it should be transparently clear that they are doing just that, and that they are arguing for a particular position based on a particular set of stated values and goals.

Now, I want to turn to offering an outline of what I would argue is a more fruitful and defensible approach to so-called futility conflicts. Too often physicians present patients and families with their foregone conclusion in what amounts to a monologue and not a dialogue. What I would call for is a return to the Imbus and Zawacki model early on in the clinical course, not just at the eleventh hour, in an effort to explicitly explore and establish the values and goals that are guiding the patient and the physician.

The physician would be encouraged to articulate her values and goals. The physician would be able to identify which treatment options might help achieve those goals and be consistent with those values and which might not. There would be an opportunity to discuss competing values and goals. There would be a possibility of genuine shared decision-making all along the way, assuming a posture of curiosity and engaging in genuine dialogue would set the stage for decision-making throughout the patient's course and create real opportunity to check in throughout to see if the agreed-upon goals are being met, if it makes sense to continue, or to try a different course.

To make these conversations constructive and to ensure the operative values were made transparent, it would be important to remember the generalization of expertise argument offered so long ago by Bob Veatch   , one of my mentors. Physicians would need to be careful not to generalize from one area of expertise, making clinical assessments, to another area of expertise, making value assessments.

Now, how does this apply to futility? Surely the physicians would be in the best position to tell us that our 83-year-old patient had anoxic encephalopathy. But I would argue it would be beyond their expertise to tell us whether continued life with anoxic encephalopathy is worth living. They could tell us whether dialysis would correct the renal insufficiency, but it would be beyond their expertise to tell us that dialysis would be meaningless or that continued life in this patient's condition would not be worth pursuing.

The unconscious conflation of facts and values is an endemic feature of the futility debate. And what I'm calling for is more discipline and skill in distinguishing which kind of statements physicians are making when making more transparent the values and goals that are guiding them. We need to find ways of bringing the medical data into conversation with the values data. And this would involve asking a series of questions about the patient and his values and goals to establish the frame of reference — and I've outlined this extensively in the article that you received in advance — asking things like what kind of person was the patient; what was important to him; had he ever faced a health crisis before; what kind of decision did he make; did he ever watch a made-for-TV movie or read a novel where these questions came up, and what kinds of things did he say? That's bringing the "S" into the conversation. Then the physician can bring up the medical information and ask the surrogate decision-maker, if it's an incapacitated patient, "What do you think the patient would want now?" and "What makes you say that?"

Now, so often in futility cases, physicians complain the family's saying they want them to just do everything, and they're at an impasse. I would say there's so much more that we can do in these cases to move beyond the intractable conflict, not to stop with, "I want you to do everything" or "I think the patient would want you to do everything," but to really dig deeper. What does that actually mean, "everything"? And then the patient, if you think the patient would want everything done, do you think he would want us, the doctors, to continue doing something if the doctors thought it wasn't helping or if it was actually causing harm, if it was increasing suffering or if it was burdensome? Is that what he would mean? Did he mean he would want us to do everything to keep him comfortable? So I think there's so much more that we can do when we hear from a family in an intractable futility conflict, "Do everything."

And there's a place to address the angst and the moral distress and the burnout that the members of the healthcare team feel as independent moral agents. There's a place for moral suasion. There's a place to make their best case for what treatment they think is appropriate. There's a place to say, "We feel like we're torturing your loved one," but not to stop there, but to be able to explore what definitions of torture, what presumptions of torture are shared or not shared by the family and the healthcare team.

In the vast majority of cases, assuming a posture of genuine curiosity, asking open-ended questions, being willing to really listen and being willing to share one's concerns I think will result in constructive rather than adversarial discussion. And I think if we did a better job with these kind of conversations, we would have a shrinking pool of actual futility cases. There may be some patients who would continue to request treatment, or surrogates on their behalf, just like in the Imbus and Zawacki study, but they would be the rare cases.

Now let's return to the case of the 83-year-old woman with the anoxic encephalopathy. This was very striking to me and not at all uncommon. As it turns out, with all their preoccupation with futility, the physicians in this case missed the chance to delve deeper into an exploration of who this patient was, what her values and goals were, what perspective she might have had about dialysis.

It turns out that the patient had told her daughter previously, "If there's no hope for anything, I wouldn't want to be treated." This little fact had been buried. And even when it was uncovered, no one registered the significance of it, no one took the initiative to explore with the daughter what her mom might have meant by that statement.

What did "anything" mean, a certain kind of life? Would her current status qualify? Would dialysis be consistent or inconsistent with her values and goals? What made the daughter think that? If the team had taken more care with these kinds of conversations, asked the right questions approached in the right way in this case and others, I think it's unlikely that they would have gotten embroiled in a futility conflict in the first place. By leading off and ending with their own assessment of the treatment's futility, they left no room for exploring what the patient's assessment of her condition would be, no room for genuine dialogue, and no room for a mutually agreed-upon resolution.

So just as in the Imbus and Zawacki study, there will be some rare cases even after following what I think is a more defensible approach where a patient wants a treatment and the physician still feels troubled by, perhaps even compromised by, being asked to provide it. What should we do in these very rare cases?

One is I think we need to avoid physician unilateral decision-making. I'm putting this on the table knowing I'm going to get questions about this or reactions. I happen to be an advocate of ethics committees but not of ethics superheroes or as a substitute for decision-making but rather as broadly and diversely constituted committees with strong community representation who understand the scope and limits of their role and who make very careful recommendations that they understand to be advisory only and with an open-ended process where the ethics committee comes in not knowing where they're going to end up, and contrary to, I think, the template futility policies and remembering the role of the courts without shifting the burden of proof.

We have a socially sanctioned body that does have the socially sanctioned authority to impose decisions. That's not the medical profession. That's the judicial system. And I think that's where the rare exceptional futility conflicts need to go.

Now, let's return to the case of the 83-year-old patient. What if she had a different set of values and goals that led her to value the intrinsic sanctity of her life irrespective of its apparent quality to outsiders that led her not to need to be awake or to have the ability to talk in order to have a sense of connectedness with her maker and her loved ones, that led her to view every breath as precious? Why would it be any more a violation of professional integrity for a physician to honor that belief system than it would be to honor the belief system that led a capable patient to refuse a treatment her physician felt was absolutely medically necessary? That's a tough spot for physicians to be in, too.

Why is this alternative approach to the rare futility dilemma superior? One is, I think, futility dilemmas cannot be resolved by merely stipulating the superiority of one set of values or goals or by predetermining a default outcome in cases of intractable conflict.

What's been problematic is the undefended privileging of the medical profession's perspective without the necessary investigation into the deeper question of the degree to which society shares respect or endorses that perspective. There are issues about which reasonable people can and do disagree, and what we need is a more defensible way of responding to these genuine ethical dilemmas.

We need public discourse not just medical discourse about a number of key questions. And there's a place I think the President's Council could really take the lead. Rather than having the medical profession have these insular discussions with itself, we need to find opportunities to engage the very population that might find itself embroiled in these futility debates and whose perspectives have often been marginalized and even pathologized.

If there's time in discussion I want to share two examples that I know of where this has taken place, both actually in California, where there was a very different outcome, not an endorsement of futility policies but, in fact, an abandonment of that effort.

But here's the key questions that I think we need to focus on at the public discourse level: Which values and whose values do we want to be guiding medical decision-making? What protection, if any, will be accorded to individuals who have a minority of perspective, for example, those who make religiously motivated requests? How will the need for a credible appeals process and the availability of meaningful options be addressed? What does it mean for medicine to be not only a moral enterprise but also a social practice?

It's incredibly important in this debate to acknowledge the moral tradition of medicine. But medicine is not practiced in a vacuum. There is accountability. There's a need for responsiveness to the broader community. And we can talk about ways in which that ought to go. Do we want futility to really represent an exception to the established framework for medical decision-making? This is a discussion not just to have within the medical profession but with the public at large.

And we need to be honest about the real motivations at stake. And here I think there's a need to separate out the justice question from the futility question. It would be very different to set limits based on consensually agreed-upon standards regarding how we want to spend and prioritize our collective healthcare resources.

It would be a very different thing to turn to the family of this woman with anoxic encephalopathy and to say, "We've decided collectively after much thought and discussion and a very inclusive public policy process"—Pollyanna as that may sound, but it happened to some degree at least in one state, in Oregon—"We are deciding where to spend our resources, and we've decided in that case," or let's say in the case of persistent vegetative state, "to only fund treatment for patients in a persistent vegetative state," let's say, "for three months." I'm picking that arbitrarily.

It would be a very different thing to turn to the family and to make that claim than to turn to them and say, "Treating your mother in a persistent vegetative state is futile." And what actually happens in the real world is futility is being used as cover for the justice concern.

I would argue we need to have the moral and political courage to address the justice issue head-on. And I want to suggest for my clinical colleagues who are routinely up in arms about the amount of resources they're throwing down the toilet when they provide what they think is futile treatment, if we took the time to have the right kinds of conversations and reduced the end, the sample size of these cases to what it really would be with a better, skillful approach, these rare futility cases are not where the economic savings are going to be, and we've already seen some data to support that.

If we focused on eliminating waste in the system, if we focused on making sure we weren't giving people treatment they didn't want in the first place, which turned out to be the case with my 83-year-old patient, there are places where we could really save money. Why are we focusing on these cases of so-called futility? This is not where the economic saving is going to be.

In closing, futility is not the answer. What we need instead—and this is both at the clinical level and the public policy level—more dialogue, less monologue; more transparency about underlying values and goals; more openness to perspectives different from our own; and more public and not just medical discourse. Thank you.

CHAIRMAN PELLEGRINO : Thank you very much, Dr. Rubin . I'm going to ask Rebecca to go first.

PROF. DRESSER : Well, thank you, Sue . I really think you make a very articulate case for respecting pluralism in these decisions. So I have some questions. I'm mindful of the time. I don't want to ask too many and give my colleagues a chance.

One question was to give us an example from your practice where you approached this or adopted a posture of curiosity and took your own message, and I think you've given us one, so I won't elaborate on that.

You don't address differences in two situations that I think may merit some differential treatment. So in the case where a patient is not making the request for a so-called futile treatment, but the family is or the surrogate on behalf of a patient who is still capable of experiencing pain and distress—there was an example reported in the press—it didn't go to court—called the Baby Rena case. I'm sure you're familiar with it: Eighteen-month-old patient suffering from AIDS, heart and lung disease, pneumonia, excessive cerebral spinal fluid in her brain, and kidney abnormalities, breathed only with the help of a respirator, was in so much pain she was kept constantly sedated, and when even the simplest procedure was performed such as weighing her, would cry, although a tube in her throat prevented her from making any noise. And she had some foster parents who believed God would work a miracle.

So for me that is a more difficult case in that the people who are insisting on the treatment are not bearing its burdens, and there is a more, I think, legitimate role for someone to come in and, certainly in your system, present the case on behalf of the patient, the best-interest argument. So I wonder if you have any further thoughts about that kind of a case?

And then I am interested in your call for community debate. How does that work? You mentioned the Sacramento project. Again, I don't want you to spend too much time so my colleagues can ask their questions.

And then, finally, what about the triggering event for having to bring something up? Bob Truog mentioned ECMO as a situation where a treatment that would appropriately not be raised as a possibility in every case. You must have some line where you would say it's not even incumbent on the clinicians to raise the use of a particular intervention as a possibility. So how do you draw that line? Thank you.

CHAIRMAN PELLEGRINO : Thank you, Rebecca .

DR. RUBIN : Thank you very much. The issue of the status of surrogate decision-making is a very important one, particularly as you've articulated when the patient might still have the capacity to experience pain or suffering. And I want to say a few different things about that.

One is I don't accept without challenge the claim that a surrogate decision-maker would make, and I want to second what I heard Bob Truog say. I would challenge the surrogate decision-maker, absolutely. But I would probably challenge them in a slightly different way, and it might depend on whether we were talking about an adult case or a baby case.

Let me give you two clinical examples. I had a case not that long ago of an adult patient in the intensive care unit dying of metastatic cancer and literally writhing in pain. And the nurses in ethics rounds were just up in arms. They couldn't conceive of the fact that this was happening in a modern hospital in this day and age and couldn't they do something about it. Well, it turns out that this patient was a practicing Buddhist. And for her it was far more important at the end of her life to be as alert and present and conscious as possible even if that meant enduring pain that others would have found intolerable. And she was refusing the pain medication.

So what would be interesting in that case is if she slipped into a point of incapacity. If we're turning to surrogate decision-makers to make genuine substituted judgment, for them to then override what they know she would want because it was uncomfortable for them or the staff might put them in a problematic situation.

So I want to leave open the possibility that a surrogate might be faithfully representing the patient's perspective. And I also want to say in these cases if we're willing to accept the surrogate's agreement with the medical recommendation it puts the burden on us, I think, to reject their refusal of the recommendation. In other words, in a lot of these cases there's a tendency to question the surrogate, but if they only agreed with us we wouldn't question them at all.

So I think we have to look at the question of what gives either the patient or the surrogate decision-maker status in the decision-making process. Is it because of the role that they occupy or because of the position that they're taking substantively?

And I would argue in bioethics we've said it's the role they're occupying, not whether they agree or disagree. It may be different in some baby cases because we wouldn't have had the benefit of the baby telling us that he was going to grow up to become a Buddhist.

And I've had cases like this in the NICU where the staff has felt like they're really causing tremendous harm. And I've had parents say a variety of things, and let me share a couple of them, because they were very poignant. One family member turned to the staff in the ethics consultation meeting and said, "Everywhere I look in this NICU there's pain and suffering, and you're causing it. And it's okay for you in your mind and in your hearts to do it for some babies because you believe the outcome that you're pursuing is one worth pursuing. And the reason you're saying no in this case is you don't think my baby's life is worth it like this or where he's going to end up? And I would challenge you."

And she actually said to them—it was quite powerful—"If it's too hard for you, maybe this isn't the right line of work for you to be in." It was a very bold statement. But I think she was right on some level to say, "You're doing chest tubes and needle sticks, and it's kind of ugly all around."

So the burden of proof is on the physicians and the team to say, "Why is it worse in this case than that case?" And I think she was exactly right to call to question and say, "It's because you don't agree that the goal is worth pursuing, but I think it is." So I think that that is one thing definitely to take into account.

In terms of the triggering event—I'm going to skip to the third question. I think the line—and this is a really hard argument to make, much less win, and I'm very aware of that. The best that I've come up with is relevance and irrelevance.

So if a patient comes in with a headache and they want the physician to chop off their arm, there's no plausible cause and effect as far as we know—maybe there will be some randomized clinical trial that establishes this—between loss of the limb and resolution of the headache. So I think that's a clear place to draw the line.

I'm not so sure with ECMO, although I'm persuaded by the reasons that would lead you to draw the line. If ECMO can sustain life and there's a relevance, a cause and effect between the technology and the goal, I think we need to find a different way of having the discussion about the goals, and I'm not sure that the technology itself can create the triggering event.

And, lastly, in terms of community debate, there's not a lot of good models for this. But I think that it can absolutely happen, and the two examples that were in the article include one local hospital [that] was contemplating instituting a futility policy, and they did this incredibly bold thing: They held a community forum. And the community came, and the staff came, and they put it out, the proposal, what they were contemplating. And it was met with unbelievable resistance, and they disbanded the effort.

In the Sacramento health decisions experience, that began as an example to establish futility guidelines, and they eventually abandoned it in favor of a focus on improving end-of-life care when they came to the conclusion that there was no fair and defensible way to implement and impose such guidelines. And they involved the lay population in those discussions.

CHAIRMAN PELLEGRINO : Dr. Rebecca Dresser , any further comment?


CHAIRMAN PELLEGRINO : I had the following who wish to speak: Dr. Foster , Dr. Elshtain , Dr. Meilaender , and Dr. Landry . Dr. Rubin , would you for a moment leave the answers and put them together, if you can, because I think it's going to take awhile for them to give you the answers and put them together, okay?

DR. RUBIN : Okay.

CHAIRMAN PELLEGRINO : And I'll ask first for Dr. Foster , who was first on the list.

DR. FOSTER : I want to make a statement first, and then I want to ask you one question. I'm following Rebecca 's view not to ask many questions. I think you can be very confused about the CPR issues. You stated or implied that if one was a minority that one would have less CPR and so forth. I work in an 800-bed public hospital in Dallas , which, by the way, just passed an 83-percent approval of this bond to build a new $1.3 million hospital across the street even bigger than this. Grady in Atlanta is bankrupt. So Dallas wants to have a first-class hospital.

Most of our patients are minority. Now in Texas , like California , Latinos are more than African-Americans there. And we have about 500 beds in the university hospital. We do far more CPRs in the hospital at Parkland than we do in the university hospitals.

Now, one could argue that that is because they're sicker patients, and I'm sure that has some sense in it. But in big hospitals—I'll see if Dr. Landry has the same experience—the codes are called and the minute they're called then the house—they know nothing about the patient.

If the attending physician is there on the ward they can say, "Well, we have a DNR here." But there's not a shred of evidence that I know of, at least in our hospital, that there's some discrimination that you wouldn't attempt a resuscitation if somebody was a minority, which was clearly the intent that you made.

And very often in CPR you get a heartbeat for a little while. So the issue of whether it's done anything except to live for an hour or 30 minutes—I mean, you sort of pooh-poohed that, too, that getting out of the hospital is an issue.

So that's my statement. And then I want to ask you a question. I thought that was a very unsustainable—at least universally unsustainable thing. Now, maybe in the United States that's the case, but I just wanted to make that point. When that bell rings, whatever the residents are doing, they leave where they are and go to code.

The question that I want to ask you has to do—I read your interesting paper, and at the end of it and as you've hinted here, the curiosity about the patient and talking with the patient—the first thing I would say is that I don't know of many physicians that are going to have the time to psychoanalyze a patient.

But the question is, does a woman with a dementia encephalopathy—can she validly make a decision about what she might do before she was sick, or did the surrogates usually have gone into detail about whether this person wants to do something?

I'm just worried about the practicality here and whether or not these assessments are valid. You know, we talk about dialysis. Well, you die in dialysis from heart disease, not from the renal failure. So how do you proceed?

And particularly since most people don't have long relationships with doctors—you know, if I diagnose you with cancer early on, it looks like it's a melanoma and it's not much, I mean, you and I would talk, and we would come to a conclusion about what you wanted to do and so forth. But in the short-term it's pretty hard. So the question is—if I've made myself clear—what about people who, under stress, assess answers to questions about life and particularly with surrogate persons?

CHAIRMAN PELLEGRINO : Thank you, Dan . I will now ask Profession Elshtain.

PROF. ELSHTAIN : Thank you very much, Dr. Rubin . That was admirably clear, and I read your paper, as well, and especially appreciated your argument against what you call paternalistic proposals in support of unilateral decision-making. And the question that I have follows from that argument in your paper.

It's a bit of a dilemma, and I don't expect you to have a developed answer to it. I certainly don't. But in your presentation and in your paper you talk about the importance of taking account of the patient's subjective views—values, if you will.

Now, I'm assuming that you would agree—you may have stated this and I missed it, so forgive me if I did, but I think it's consistent with your argument—that the physician's views when you get into the area of questions about what kind of life is worth living and so on and so forth—when you get into that area of values, those are equally subjective.

This is again outside the physician's area of direct expertise. So what you wind up with, then, if I'm understanding you correctly, would be a clash or some tension between two subjective statements of value.

Now, we know well enough that when that happens, when you—let's assume this scenario, that it tends to be those who have the power to impose their views that tend to prevail in those kinds of situations and that physicians in these circumstances and the whole sort of apparatus of the hospital has more power than the patient. Now, your solution to that or way to try to work through that is, again as I understand it, what you call genuinely open, inclusive public discourse. You really bring all this to bear. People have these discussions.

And what you often find out as a result of this is that the futility policies are sort of quietly put off to the side and something more appropriate to this particular case tends to emerge and will not necessarily always be decided in favor of the physician's views.

Now, so far so good, let's say. But as you well know, there are many who would argue that, in fact, we do not have a situation where you have equally subjective statements of value, that, in fact, some value claims have greater, stronger truth warrants behind them than other claims of value.

And that's always going to be implicit, it seems to me, in these kinds of discussions. In fact, there are some of us who would worry about talking about values as subjective claims in the first place because it seems to suggest that there's no strong truth warrant behind these claims. And that's why you wind up with power being the final adjudicator.

So probably the hospital and discussion about it is not the best place to settle these very complex kinds of statements of value, but one way or the other I think someone is going to say, "But my values—there's more support for them. There's more evidence for them. There's a stronger set of truth claims behind them than yours."

I mean, let me just—and then I'll end with this. Very briefly, over the span of Western history, for example, we've moved from the view that was accepted that there are some people who are slaves by nature—let's take that as a statement of value—to the view that that view is anathema.

We don't regard these as equal statements of value. We believe that there's been tremendous moral progress in moving from the one position to the other. So you can see a sort of fundamental shift in favor of a stronger truth claim behind a statement of value.

Now, that seems to me to be lurking in some of these debates, as well, because you're getting right to the heart of what life itself means, and there are all kinds of issues that are going to attach to that. So you're always going to have this very volatile mix, it seems to me.

Suppose that in this discussion that you're talking about—let's make it from the side of the patient, that someone steps forward and says, "There's"—and I'm prepared to make the case—"much stronger warrant for the truth of what I'm saying than what you're saying, even though you're the physician and I'm not." How do you sort that? How do you sort that out?

CHAIRMAN PELLEGRINO : Thank you. Let's have two more Council members comment, and then we'll give her a chance to respond to all four. Prof. Meilaender ?

PROF. MEILAENDER : Thank you. I'm very sympathetic to some of the moves you make, although I find myself starting to worry that in order to correct for one kind of problem you're going to create another one. I have two questions, really, that in some respects follow up on some of Rebecca Dresser 's questions.

You did say at one point that we could distinguish between treatments that are effective, which you characterize as a medical judgment, and treatments which are beneficial, which you characterize as a judgment that includes questions of values and so forth. Would you have any problem with a notion of futility based on effectiveness, then, which would make it a medical judgment? That's the one. And then the other, the fifth of your key questions was, "Should futility represent an exception to the established framework for medical decision-making?"

That seems to assume that the established framework for medical decision-making is a sort of dialogueical process in which nobody has the final say or so forth. But do physicians have to engage in those discussions about everything that patients wish or propose?

I mean, I have in mind, admittedly, their unusual circumstances with the person who says, "Doctor, I've always thought that I'm really a double amputee, and I'd like you to do that for me." I mean, is there no place in your system for that kind of medical judgment?


DR. LANDRY : I'd also like to pick up on something mentioned by Prof. Dresser , and that was the ECMO case. I don't think that the conflicts that we think will be minimized through further discourse will actually be minimized at all if you don't recognize that there can also be a certain tyranny to patient autonomy.

Every patient who expires in respiratory failure on a ventilator could in principle be offered ECMO. It would be cruel, actually, to raise that as a possibility. It would just be cruel to the family. And I think that it's an abdication of physician responsibility to simply offload everything that is possible without any consideration for what is reasonable. And so I think that, while I was with you for much, I was lost when you went that way.

CHAIRMAN PELLEGRINO : Thank you. Dr. Rubin ?

DR. RUBIN : Let's see if I can capture all of this. First, Dr. Foster , I think I was misunderstood, so let me correct that. I was by no means suggesting that when the code blue is called that the house staff would try to determine the race or ethnicity or gender of the patient.

What I was referring to is the empirical data that shows—you might recall this. I think it was in JAMA and other journals where there are photographs of standardized patients who come and present and are treated differentially in terms of a workup and proposed treatment. And I just was pointing out to the reality of health disparity on a general level.

In terms of will doctors really have the time to have these conversations and, I might add, much less the skill to actually do it, yeah, I think they do, and I think they must, and I have seen it done beautifully by hospitalists who have no prior relationship with the patient or the family.

I think we need to stress this more in medical education, and I think we can very effectively in very short order get to the heart of the matter in a conversation with either the patient if they're well enough or with the surrogate decision-maker.

DR. FOSTER : The last part, you talked about coming back for another session when the first session didn't work, and I thought that's what you said.

DR. RUBIN : And then, Prof. Elshtain , thank you very much for your comments. And obviously as you acknowledge, these are enormous issues. And let me try to do my best to respond to some of them. So what to do if someone says, "Well, my value claim has stronger support." There's a strong truth warrant behind that.—How would I sort that out?

There's a couple of things. I agree actually with Dr. Truog . When we get people together—and I say this anecdotally based on my own clinical experience—I think when people really hear each other there are almost always profound shifts that take place.

And this sort of digging in of heels and "My claim is better or has more support than yours" softens when we are real people grappling with a painful choice because there is loss on both sides. Whenever we make a decision we're choosing not to go down that path as opposed to this one.

So I'm less worried that that will be actually the dominant reality. And then I think there's a couple of things to say about it. Ultimately what we're talking about—and I don't mean anticipating the next question here to suggest the tyranny of autonomy should carry the day.

And I'm often misunderstood for making an argument that I'm not making, which is that whatever the patient wants the patient gets. So that's not what I'm suggesting here. But I think it ought to give us pause in these so-called intractable futility conflicts that while the physician and the other members of the healthcare team feel very deeply about this, ultimately, while it may have profound implications for them in terms of their own conscience, it's not ultimately their body or their life or their dying process.

And I want to suggest that that at least needs to give warrant to the patient or surrogate having an important status in the conversation, not trumping in all circumstances. And the hard situation will be to answer, "So where do you draw the lines, and when can patients be told no?"

And I think that we do have examples of that. Dr. Schneiderman talked about providing the anabolic steroids. Well, I would say that's a great example of the medical profession setting socially sanctioned limits, so really as a gatekeeper on behalf of society at large, which has chosen to draw lines in certain ways. And I think that that's going to be our best bet as we go forward in trying to sort this out.

We do turn to physicians. Going back to your question about the distinction between the effective and the beneficial, we turn to physicians, rightly so, for information about which treatments are effective, but I want to distinguish whether we should be turning exclusively to physicians in the selection of the goals themselves.

So in the clinical scenario that I presented, it's the physician that can tell us the diagnosis but not whether it would be beneficial to treat. So I don't know what I might be giving up by—you were suggesting that I might be weakening the argument by making that distinction between the effective and the beneficial, would I have a problem with futility judgments based on effectiveness.

I think if we have an agreed-upon goal that's consensually agreed upon between the patient/family and the physician, then I would turn to the physician to say, "Is that an achievable goal?" And I think that would be an appropriate exercise of the physician's expertise.

On the issue of the double amputee, which I think is similar to the anabolic steroids, I don't think that we have to—I mean, there actually are physicians who are offering this, as you know. There's some very interesting literature that Carl Elliott brought to the front in the Atlantic Monthly, and there are a couple of physicians who are treating these requests to become amputees the same as some physicians treat requests for gender reassignment. So it's a very complicated issue.

I don't think that physicians have to put every imaginable treatment option on the table. I think the patient comes with a presenting concern. And, again, I would turn to the relevant/irrelevant distinction as one way of helping the physician draw lines about what to put on the table or not. I think there's a lot more to say, and it's an incomplete answer to some really pointed questions, which I'm happy to follow up on.

And then, Dr. Landry, about ECMO, it very well may be ultimately cruel to put ECMO on the table for every patient, and it may be that we could achieve broader social consensus about that and that based on our vision of what most people view as a good death, it wouldn't be the thing that would be routinely offered.

But what I wanted to suggest is there might be exceptional cases where the sustaining of life would be the overriding goal for an individual patient and where the team might actually be persuaded in the exceptional case of the worthiness of that goal for that particular patient. And we could only know that by having the conversation. And if we could never entertain the thought of potentially offering an intervention like ECMO, we might miss those exceptional cases.

DR. LANDRY : But then you would have no problem with a physician paternalistically withholding the knowledge of ECMO from someone.

DR. RUBIN : I think it depends on the context. I think I would imagine the conversation going something like this: "In my clinical opinion, it looks like your mom is coming to the end of her life, so let's talk a little bit more about how you think she'd want that to go."

And if the surrogate starts representing things that are like the exceptional patients in the Imbus and Zawacki study, it might go one direction, and I think those will be very exceptional cases. And I wouldn't accept as stated the surrogate's description of "Oh, my mom would want you to do everything."

I would, as I've described, dig deeper, and I bet there would be very few patients who would sign up for that. But there might be the exceptional few. And if the answer is, "Oh, my mom's Aunt Mary died the most peaceful, wonderful death at home," like that cartoon we saw earlier with everyone gathered around with the chimpanzee. And this is what she would wish for, then obviously based on the subjective data, there would be no relevance to bringing up ECMO.

So I don't want to take off the table universally the possibility that we might introduce ECMO in an exceptional case, but I think in most cases it would end up being not relevant to the goal.

CHAIRMAN PELLEGRINO : Thank you very much. I think to keep the schedule we'll have to call this part of the session over for the next 15 minutes. A little bit of a break and then Dr. Carson and Dr. Foster.

  - The President's Council on Bioethics -  
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