10:00 a.m.-noon
National Press Club
Washington, D.C.
Sponsored by The Pew Forum on Religion & Public Life, The Federalist Society, and The Constitution Project
End of life decisions have been much in the news lately, with the Schiavo case and the late Pope’s medical treatment dominating recent headlines. Interest in this issue is likely to continue, as the Supreme Court is planning to hear a challenge to Oregon’s 1997 Death with Dignity Act next term. Congress and state legislatures also are poised to consider various bills aimed at addressing end of life issues.
These and other developments raise a host of questions. Under what circumstances should an end of life decision be taken out of a family’s hands? What happens when a patient’s wishes are disputed? What role should the federal and state governments play in making or enforcing these decisions? Please join our distinguished panel of experts as they discuss these and other questions.
Speakers:
Daniel W. Brock, Charles Burgess McGrath Professor of Medical Ethics and Director, Division of Medical Ethics, Harvard Medical School
R. Alta Charo, Professor of Law and Medical Ethics & Associate Dean, University of Wisconsin Law School
Robert P. George, McCormick Professor of Jurisprudence and Director of the James Madison Program in American Ideals and Institutions, Princeton University
Carlos Gómez, M.D., Ph. D., Associate Director, The Institute for Education and Leadership, Capital Hospice
Moderator:
David Masci, Senior Fellow, the Pew Forum on Religion & Public Life
Survey from the Pew Research Center for the People & the Press:
Strong Public Support for Right to Die
DAVID MASCI: Good morning. My name is David Masci and I am a senior fellow at the Pew Forum on Religion and Public Life. On behalf of the Pew Forum, the Federalist Society for Law and Public Policy and the Constitution Project, it’s my great pleasure to welcome you today to a discussion on end-of-life issues.
Today’s event is the first in what will be an ongoing series of discussions on law, ethics and religion. We plan to have many more of these types of events in the future and hope that all of you will be able to join us when we do. Before I get to the issue at hand, let me just take a minute to tell you about the three groups that are sponsoring today’s discussion.
The Pew Forum, which is the organization that I work for, is part of the Pew Research Center. Its mission is to provide timely information on important issues at the intersection of religion and public affairs. We are non-partisan in nature, which means that we take no positions on any topics or issues, including the ones we will be discussing today.
The Federalist Society is a group of conservatives and libertarians interested in law and public policy. It is founded on the principle that the state exists to preserve freedom and that it is the province and duty of the judiciary to say what the law is, not what it ought to be. The Society seeks to promote an awareness of these principles and to further them through its activities.
Finally, the Constitution Project, based at Georgetown University’s Public Policy Institute, conducts national bipartisan public education on controversial constitutional law and governance issues. These include the balance between liberty and security after 9/11, the death penalty, judicial independence, criminal sentencing and the constitutional amendment process.
While I am on the subject of our partners, I would like to thank Dean Reuter and David Ray of the Federalist Society, and Virginia Sloan and Spencer Boyer of the Constitution Project for their outstanding efforts and hard work in helping to organize this event.
We are here today to talk about the legal, ethical and public policy implications of end-of-life issues. I don’t have to tell anyone that this topic has been in the news lately. The case involving Terri Schiavo dominated headlines for weeks before and after she died, leading to a public discussion on this issue that stirred the passions of people of all political stripes. The subsequent death of Pope John Paul II, coming just a few weeks later and after a long bout with debilitating illness, also helped to stoke this debate.
What is more, the focus on end-of-life issues is likely to continue. In the aftermath of Schiavo case, a number of state legislatures are considering new guidelines to govern end-of-life decisions. Moreover, the Supreme Court in its next term is slated to review the federal government’s efforts to curtail Oregon’s 1997 Death With Dignity Act. Oregon is the only state law so far that allows for assisted suicide in cases involving the terminally ill.
These events – past, present and future – throw up a host of questions, certainly too many for me to list here. On a very basic level, you might ask what principles should govern end-of-life decisions, and what role should the federal and state governments play in making and enforcing these decisions? Here with us to answer these and other questions is a truly distinguished panel of experts. We have provided relatively detailed biographies of each of the speakers for you, but let me just briefly introduce each of them in the order in which they will appear.
First up today will be Dan Brock, a professor of medical ethics in the Department of Social Medicine at Harvard University’s Medical School, where he is also director of the division of medical ethics. Throughout his distinguished career, Dr. Brock has written numerous articles on bioethics and moral and political philosophy. In addition, he served on the President’s Commission for the Study on Ethical Problems and Medicine in the early 1980s, and in 1993 was a member of President Clinton’s taskforce on national healthcare reform.
Following Dr. Brock is Dr. Carlos Gomez, who is the associate director of the Institute for Education and Leadership at the Capital Hospice, located in Northern Virginia. As one of the nation’s foremost experts on palliative and terminal care, he has been a regular media guest, including appearances on shows like the PBS series, “On Our Own Terms: Moyers on Dying.” Dr. Gomez has received a number of important grants and honors, including the 2002 Humanism in Medicine Award.
Next up we will hear from R. Alta Charo, who is a professor of law and bioethics at both the law and medical schools at the University of Wisconsin at Madison. In addition to serving on the editorial boards of bioethics journals and on a number of medical ethics advisory panels, Professor Charo has served on the Human Embryo Research Panel at the National Institutes of Health and was a member of the President’s National Bioethics Advisory Commission from 1996 to 2001.
Our final speaker today is Robert George, who is a professor of jurisprudence at Princeton University where he also directs the James Madison Program on American Ideals and Institutions. Like our previous guests, Dr. George is frequently quoted in print, and on radio and television; he is author of a number of critically acclaimed books and many articles; and is the recipient of a number of awards including most recently the 2005 Bradley Prize for Intellectual and Civic Achievement. He is also a number of the President’s Council on Bioethics.
Now, before I hand things over to our first panelist, I would like to ask everyone to please turn off their cell phones and pagers so that the speakers and other audience members are not distracted during the presentation. Thanks very much.
And now, without further adieu, let me give you Dan Brock.
MR. BROCK: It’s a pleasure to be in the First Amendment Room. I left Washington a year ago for Harvard because of encountering censorship in my job at NIH, so the First Amendment Room has special meaning to me. (Chuckles.)
I think this panel is here, as David mentioned, in large part because of the Terri Schiavo case. And probably a number of you are here in large part because of that and the political storm and controversy that it generated, and also because what it brought out was that there are some who see end-of-life decision-making as either broken or at least in need of revision from what has been the consensus that has developed.
As David mentioned, Congress is considering acting in this area – it has been holding hearings in this area – and a number of states are considering acting in this area. I want to argue that it is not broken and we certainly don’t need Congress intervening in this area.
So I think what I want to do is to start with what the consensus is and that may be useful for the whole panel. This is a consensus that has developed over the last 30 years, beginning with the Quinlan case, through a number of presidential commissions. We have three different commissions I realized – (chuckles) – represented up here through a series of court cases and through a lot of bioethics literature and professional statements on this.
So what is that consensus? In its core it’s that the patients have a right to decide about and to refuse any treatment. They have a right to select from among available alternative treatments or medically acceptable alternative treatments, but to refuse any treatment. And that consensus has rejected a number of limits, which over the last several decades have been thought by some to qualify that right. For example, it was thought certainly in the ’80s that while it was permissible not to start life-sustaining treatment, it at least was a more weighty matter and sometimes impermissible not to stop it.
That distinction has been largely rejected, and it’s now held that there is no moral or legal difference between stopping and not starting a life-sustaining treatment. It has often appealed to the distinction between ordinary and extraordinary measures, where ordinary measures were thought to be obligatory and extraordinary measures were permissible to forego.
That distinction too was interpreted many different ways, and so it led to confusion. That distinction has largely dropped out of the public policy literature; it still has important weight within particular religious traditions, most prominently the Catholic religious tradition, but it has largely dropped out as a constraint on public policy and moral permissibility.
Another distinction that had some weight during this time was whether the patient was terminally ill. It was thought by some that terminally ill patients could refuse life-sustaining treatment but non-terminally ill patients couldn’t. This is obviously relevant to the Schiavo case because she was not terminally ill by the ordinary understanding – the ordinary understanding being expected to die within six months no matter what treatment is provided. That too has been rejected and it has become accepted that a patient, whether or not terminally ill, has a right to refuse any treatment.
And finally, a distinction that was made between different forms of treatment, with some being permissible to forego, others not, has largely dropped out of the consensus – in particular here, and again relevant to the Shiavo case, but other cases as well. Some thought that artificially provided nutrition and hydration couldn’t be foregone in circumstances where other life-sustaining treatments also providing basic needs – meeting basic needs such as respirator treatment could be foregone. And now I think the consensus largely holds that any treatment including artificially provided nutrition and hydration can be foregone.
What is that consensus based on? One can put it in several different ways. I think the way I prefer to put it is that it’s based in the importance we give to individual self-determination or autonomy. If you look at the legal cases with regard to informed consent, there are ringing appeals to self-determination that go back to the early part of the last century if not even into the late 1800s. And the law is based on the right to privacy or a right to bodily integrity, and also a right to liberty and a right not to have one’s body imposed on without one’s consent.
Now, that is for a competent patient. What about – what is commonly the case – an incompetent patient where surrogates have to decide for that patient? In the Quinlan case in 1976, it was established that one didn’t lose the right to decide about treatment and to have one’s wishes honored with regard to treatment when one became incompetent, but rather that a surrogate could decide for an incompetent patient. In that case it was Karen Quinlan’s parents.
One issue that then arises when one moves to surrogate decision-making is who ought to be the surrogate, and that was obviously a central issue in the Schiavo case. Here again I think the consensus is correct. Fundamentally it ought to be who the patient let us know she or he wanted to be the surrogate or would have wanted to be the surrogate. One let’s someone know with judicial effect or with legal effect by formulating usually a durable power of attorney for healthcare, which names who your surrogate will be. And in the absence of such naming, which is usually the case, then who ought to be the surrogate is the person that the patient would have wanted to be his or her surrogate.
Now, what is important about that is sometimes it’s that it ought to be a close family member simply because the close family member will know better what the patient would have wanted than anyone else. That certainly is one of the reasons for a close family member being a surrogate, but not the only reason. And so, if that were the only reason, then every time we had any evidence that this isn’t what the patient would have wanted, we would have reason to dislodge that surrogate from decision-making authority. But I think what most patients want is for a close family member to be their surrogate with at least some range of discretion.
If there is an advance directive, the consensus says that that directive should be followed if it contains instructions that are relevant to, or determinative of, the decision that needs to be made. Probably most of you in this room don’t have advance directives, my guess would be. If most of you do, you are an unusual group. Most Americans don’t have advance directives and in a number of studies it’s been shown that even when people do have advance directives, they usually don’t provide very clear guidance for the actual decisions that have to be made in end-of-life circumstances.
One important point here is that in the absence of an advance directive, there should be no presumption in favor of treatment as opposed to against treatment. There are different reasons for those of you in this room who don’t have advance directives. The reason you don’t is not that you want every treatment that would be possible. You haven’t gotten around to it, you don’t like to think about this stuff, so forth and so on, but it’s not because you have a clear preference to always get any treatment. So in the absence of an advance directive, what do we need to do? We need to proceed by attempting to determine what the patient’s wishes were, not by accepting a presumption in favor of treatment.
Now, the other piece of this consensus is that there are also procedural safeguards – processes which also surround the decisionmaking of either patients, physicians or surrogates about end-of-life care. Typically most Americans now die in hospitals or sometimes in hospices. That means that they are surrounded by a number of health professionals who will be involved in decisionmaking and provide some safeguards to the kinds of decisions that can be made and will be accepted.
It is also the case that in every hospital, they are now required to have an ethics committee to which decisions can be referred when there is uncertainty or controversy about them, and the courts stand ready to take these decisions as well if there is irresolvable disagreement among parties, as the Schiavo case illustrated. So the point is we already have consensus about some of the distinctions that bear on the decisionmaking. We have a consensus about who should be surrogates, which I think is basically correct, and we have a number of institutional procedures which safeguard that process and, if you like, scrutinize that process.
I think Schiavo shows the importance of leaving these decisions with family members probably better than any other way we could have shown that. I think the decisions should be taken away under the following circumstance: when a family member acting as a surrogate, or for that matter a non-family member acting as a surrogate, is making a decision that is clearly contrary to the expressed wishes of the patient, or, if those wishes aren’t known, clearly contrary to the fundamental interests of the patient.
And that is a restriction on the authority of surrogates that is built in to most durable powers of attorney statutes in the states. It’s in the first one of those that came from California, which was copied by a number of other states. That standard was clearly for removing Michael Schiavo in the Schiavo case. I think that standard was fairly clearly not met. So that is when the decision ought to be taken away from a surrogate.
I think there is no role for external zealots or ideologues that were so prominent in the Schiavo case, or for that matter for Congress intervening. I take it to be some solace about that case that a number of polls during and after it indicated that the public was soundly opposed to the kinds of intrusions that other parties, and in particular Congress and other political individuals, undertook in that case. If Congress gets involved in this they will likely treat it as a political issue and will use it to play at this point to the religious right. I think that is almost a foregone conclusion with what I would take to be pernicious effects.
So let me finally finish up with a point that there is no basis for a presumption for treatment in the face of disagreement or uncertainty about the patient’s wishes. There was certainly disagreement about the patient’s wishes again in the Schiavo case. What should take place is the best assessment by the patient’s surrogate and physician of the patient’s wishes, or, absent knowledge of the patient’s wishes, of the benefits and burdens of alternative treatments, including the alternative of no treatment; this assessment should be done without any presumption for or against treatment.
In the case of PVS, persistent vegetated state, which was Terri Schiavo’s condition, there are a number of studies that show that very large majorities – upwards of 90 percent of Americans – say they wouldn’t want life-extending treatment if they were in that state. So if anything, in the case of uncertainty with PVS patients, the presumption should be against treatment because that is what most people have told us would be their wishes – not in favor of treatment.
And then I would finally add that I think there are not grounds for a higher standard of evidence for artificial nutrition and hydration than for other life-sustaining interventions such as respirator support. Thank you.
MR. MASCI: Thank you very much, Dr. Brock. Dr. Gomez.
DR. CARLOS GOMEZ: I want to thank David Masci and the Pew Forum, and the Federalist Society for the event for a couple of reasons. One is it’s nice be invited to something like this, but the second is that during the Schiavo case, one of the things that I was asked to do as an expert was to provide medical information about not just advance directives but about hospice care, end-of-life care generically and the clinical conditions under which people die.
And one of the things that I found alarming, in fact stunning, was the degree to which the press – and I apologize to my colleagues in the press – is grossly misinformed or uninformed. It was a time for there to have been general public education and I think we missed it. I think we missed it on a number of different grounds. I do think that the information that actually got out was inappropriate, and in fact false to a huge extent, and I’ll give you one small example.
The hospice that took care of Terri Schiavo did a superb job from a medical standpoint to be able to take care of a woman who is in a persistent vegetated state or a minimally conscious state or whatever we choose to call that state for 15 years without decubitus ulcers, etc. That speaks to the care that the nurses and the physicians took with this particular woman. And so the first thing that I want to suggest is – and I say this with some self-interest – that the knock that hospices got in this case was grossly misinformed and very inappropriate.
The second thing I want to say is that I agree with Dan Brock – in fact, I agree with everything that Dan Brock said – except the part that came after I’m honored to be here in the First Amendment Room. (Laughter.) And I actually can say that because the last time that Dan Brock and I met was on a PBS show and he roundly whipped my behind. So turnabout is fair play.
What I want to suggest here is a couple of different things. One is that this debate does not have a consensus unless you want to say that settled law is in fact a consensus that’s unchanging. And the analogy that I would make is to civil rights: there was in fact settled law in this country about what we could and couldn’t do vis-à-vis white people and people of African descent, and in fact those laws were challenged on a variety of different levels, including theological levels, including cultural levels, and in fact a new consensus evolved, and the courts and the legislatures lagged behind.
So the first thing that I want to suggest is I wouldn’t use the word “consensus”; I would use the word “settled legal doctrine,” and that may or may not be useful at this point. My guess is that it’s not going to be useful and the Terri Schiavo case may in fact be just one instance of it.
The second thing that I want to suggest is that if you look around this room – and I don’t know everybody in this room – I’m going to guess that the medical profession and the nursing profession are grossly underrepresented. We are the people who actually take care of these human beings, and in fact, with the exception of my colleague Mary Baylor, who is a nurse by training, and myself, my guess is that there just aren’t that many people who have any clinical experience. I don’t say that to denigrate the work that the rest of you do, but I want to suggest that a panel that has two lawyers and a philosopher while useful, important, and actually extraordinarily articulate, misses the point all together.
And I blame my profession for this, and I blame the nursing profession for this because the clinical voice in these decisions has been grossly left out. You are talking about decisions that have to do with life and death, and they also have to do with the uncertainty that comes with clinical practice. The people who are looking for certainty in these decisions are always going to be disappointed irrespective of where you come down on the Schiavo case.
So the first thing that I want to suggest is, number one, the information out there is atrocious, and, number two, I don’t think that there is a consensus and in fact the Schiavo case to me suggests that if there was a consensus, it’s slowly breaking down. Whether that is a good thing or a pernicious thing, Dan, I don’t know; actually, I do know, at least from my perspective.
And without this sounding like an ad hominem attack – and it really isn’t intended to be because I probably would put myself in this camp – the consensus that has developed around end-of-life care is a consensus among white liberals. And the reason I say specifically talk about race and politics is that if in fact you look at who objected to Terri Schiavo’s discontinuation of nutrition and hydration, there was a heavy, heavy preponderance of African Americans and Latinos. Whether those were based on theological precept decisions or not is not clear to me because the surveys aren’t in yet.
But what I want to suggest is that there are cultural norms from which people act that may in fact say that the consensus isn’t appropriate, that there is an evolving consensus, and that if in fact we are going to protect minority rights, however we choose to define those, something else needs to happen, or at least some other process needs to happen. And, by the way, I wasn’t happy with what either President Bush or Congress did in this particular instance. I thought that was wrong-headed, inappropriate, and I think it just muddied the waters, and that is probably the only completely political statement that I’ll make.
A couple of other things – we talk about the notion of nutrition and hydration as medical treatments, and they have been discussed exactly as medical treatments since the Cruzan case in the Supreme Court. Without going into all of the fine details, one of the things that the Supreme Court held in that particular decision was that in fact food and water could be likened unto other forms of medical treatment, which we had already agreed could be discontinued – whether it was a ventilator, antibiotics, pressers and so on.
I think that is wrong-headed for a couple of reasons. One is that there are instances in which hydration and nutrition are clearly medical treatment, in which one is trying to achieve a therapeutic effect on behalf of the patient – somebody who comes in with dehydration, shock, etc., is clearly somebody who needs rehydration. Somebody who has been burned or had a proximal gut illness is somebody who needs nutrition.
The distinction here – and I don’t know how to solve it – is whether one considers cognition per say to be an issue of human-hood or personhood, or whether the question is the human being all by themselves is, what I would say the supporter’s of the Schindler family would say, simply a gesture of human hospitality. We don’t allow people to lie in their own feces whether or not they are awake and we don’t allow people to go un-bathed, whether or not they are awake. We provide a modicum of care which I would say has nothing to do with medicine or nursing per say but with the way human beings ought to treat one another.
So I’m going to suggest that if there is a consensus on this, it is going to be a consensus that has to do with nutrition-hydration as medical treatment. And I would make a distinction between nutrition-hydration as medical treatment and nutrition- hydration as therapeutic intent.
A couple of other things that Dan said – and I’m doing something unfair here, which is I’m playing off of his remark, but again, you know, tough – (laughter) – If there isn’t a consensus – and I think that there isn’t a consensus in the way that we think about a consensus – I’m also going to suggest something else and that is that there isn’t a presumption against treatment in this country, nor should there be for a variety of reasons. It’s not to say that I haven’t discontinued ventilators many, many times or removed feeding tubes many, many times, or stopped any sort of life-sustaining treatment in my patients because I have. That is not a presumption in favor of withdrawing treatment. That is a presumption in terms of the fact that I’m dealing with a human being and if I make a mistake, they are dead. It’s that simple. A mistake which is a presumption on behalf of withdrawing treatment isn’t reversible; a mistake on behalf of continuing treatment is in fact reversible.
Now, 15 years, I would agree with you, is an awfully long time to figure out whether one is making a correct or incorrect presumption. And, you know, again, without commenting specifically on the Terri Schiavo case, I would say something quite trite here, but I’m going to say it anyway: hard cases make bad law. And I think that if the Schiavo case is useful in any way at all it is to bring up this question of how in fact we want to live our lives in what has been called “the in-between.”
And this comes to my final point. The idea of terminal illness as a function of what rights one has in terms of withdrawal of life-sustaining treatment or nutrition or hydration or anything else, for that matter, is a fiction. Terminal illness was defined in this country precisely so that the hospice Medicare benefit could be used. And the reason that six months was used was a historical accident. It was based on the experience in England with hospice after World War II when in fact the national health service had very few options for treating tumors – solid tumors. And it was Cecily Saunders, God bless her, who said there is an alternative way of caring for these human beings because we cannot cure them, and she invented the modern hospice movement.
If you look at the epidemiology of a solid tumor that is palpable and advanced, 95 percent of people die within six months. That part is simple. There is an epidemiologic certainty about that – as certain as one can be epidemiologically. Some people will survive up to a year, some people will survive even longer, because we’re not perfect in terms of our diagnosis. But to talk about terminal illness and say that there is a consensus of six months, I think, is to pay homage to pretty crummy thinking on the part of Congress, and I would also say an abdication on the part of medicine and nursing as to what it is that actually happens.
And the reason that I want to say this is that if in fact we are moving towards this idea that there is a presumption against treatment, and that if the presumption is that this is only something that is going to be offered to terminally ill people, the logical end of this is, quite frankly, no where in sight. I think that the argument here has very little to do with clinical medicine; it has very little to do with intervening in human beings who are sick, and it has a lot to do with fundamental questions as to who we are and what rights actually pertain to us irrespective of our medical condition.
As a physician, I can’t see the distinction between not treating somebody who is terminally ill and not treating somebody who simply doesn’t want treatment. And quite recently, I had a woman with recurrent breast cancer who probably had years to live decline treatment for a variety of reasons, one of them being that she didn’t want to burden her family; the second one of which was she simply didn’t want to go through this therapy.
Is she terminally ill or not? – not a useful question. Should she have been eligible for hospice care even if she had survived for a year, a year-and-a-half? Absolutely. It was an appropriate response to a human being who was suffering and we could have taken better care of her. So, again, I want to suggest that whatever consensus seems to have developed, I think, is based on a number of fictions.
Now, the final question – and I’m going to leave this for Alta – by the way, we decided to address one another by first names; it’s not disrespectful, it’s a consensus, right? (Laughter) So here’s the question: if advance directives have been established in law – and they have been – and if in fact there is a consensus about making one’s wishes available – and there is – there is something really curious that has happened here.
We have been talking about advance directives and living wills for at least 30 years. The courts have approved of them, legislatures have passed legislation, the medical profession and the nursing profession have talked about how this is done – it’s supposed to be a conversation that occurs in the clinician’s office; it’s supposed to be something that one does when one is discussing this with one’s significant other, be it a spouse, a child, or a parent, and yet it doesn’t happen. It simply doesn’t happen.
I think it would be useful to ask the question of why it doesn’t happen, and I’m going to offer one potential answer: because there is no way that a human being can ultimately predict how they are going to die; it simply is beyond our human possibilities, including mine, including the nursing profession’s, including epidemiologists. We are alike, alike, alike, and yet uniquely different. And I think that what lurks in the back of people’s mind is not just the idea that death is a difficult topic – because it is – but that it is very difficult to make a decision 10, 20, 30 years down the road.
Does that suggest that advance directives and living wills aren’t useful? Absolutely not, but I would suggest that the purpose of living wills and advance directives has less to do with enshrining a choice in the law and more about beginning a conversation with one’s physicians and one’s loved ones about the sort of life that one likes to lead or should lead or would like to lead. So let me stop right there.
MR. MASCI: Thank very much. Professor Charo?
R. ALTA CHARO: I’m going to add my thanks to the Pew Forum, to the Constitution Project, and to the Federalist Society, not only because I always like coming into D.C., but because it is always interesting to discover how very much agreement there really is. I’m listening to both Dan Brock and Carlos Gomez and finding I agree with easily 95 percent of what both of them are saying, because in fact I think the areas of dispute lie somewhat deeper than people have expected in this debate.
And so I would like to turn my remarks to something that is perhaps less directly pertinent to the Schiavo case but I think picks up some of those themes that may reveal the other areas of discussion that I think are driving how we approach what we agree are questions about what to do in areas of inherent uncertainty, for example.
And I would like to start those remarks by focusing on the role of biology in the construction of legal categories, legal definitions and legal rules. I think we’re pretty familiar with the more common uses of biology, which are called a kind of socio-biological uses. I mean, just to liven up what is otherwise a fairly sober discussion, let me share with you a quote from Slate in 1996 that was talking about the Clinton-Dole distinction:
“Consider the extreme thirst for status and power found in male homo sapiens in general and Clinton and Dole in particular. According to evolutionary psychologists, this thirst exists because during evolution, it led to lots of offspring. Those of our male ancestors who most doggedly climbed to the top of the local status hierarchy were often rewarded with sex partners, either multiple wives – the Dole approach – or multiple lovers – the Clinton approach.” (Laughter.)
See, I knew you guys needed just a little relief. (Laughter.)
“Hence the cruel irony facing Clinton, and to a lesser extent Dole, from nature’s point of view: a central purpose of pursuing status is to convert it into sex. Yet demonstrated success in making this conversion is now deemed a disadvantage in the quest for the highest status slot in the world.” (Scattered laughter.)
This is, however, despite how hilarious it is, really the most traditional kind of use of biology – an attempt to use it, particularly in an evolutionary context, to justify legal rules that seem to reify what apparently some people think nature has dictated by our biology. But there is actually another set of ways in which biology is used that I think goes less noticed, and that is the way in which there is a perception that biology is truthful, immutable and unambiguous, and that its definitions and categories must be adopted into law and used as the basis for legal regimes.
And yet, when we actually step back and think about this, we recognize that many of these biological truths are neither true nor unambiguous nor immutable, and that in fact we frequently employ legal fictions because we recognize that there are social goals that are going to be answered only by the construction of a social regime. For example, we use legal fictions even when we absolutely know that the biological category is false, and the classic example would be adoption, where we absolutely know to a certainty that the child is not the biological offspring of these parents, but we pretend that the child is and we create a legal fiction in which this child’s relationship to the adoptive parents is identical.
We also can allow ourselves to make legal inferences when biology is uncertain; people who are absent for a period of years without explanation can be declared dead. We don’t know if they are biologically dead, but we permit ourselves to infer that from the absence, saying this is the most likely biological truth out there. But we don’t even limit our inferences to those things that are probable. Sometimes we use legal inferences that are absolutely improbable.
Those of you in the audience that are lawyers – and I do accept the fact that we are irrelevant and there are too many of us, Carlos. (Laughter.) But those of you that are lawyers and can remember back to your trust and estates course will remember the whole phenomenon of simultaneity of death statutes in which accidents would take place, but you didn’t know who actually died first. Who died first determines how the will is probated. It seemed rather pointless to probate a will so that, you know, Jane’s money went to John before John’s money went to Tom, because John wasn’t alive long enough to enjoy Jane’s money.
And so the legal inference of simultaneous death was adopted to simplify the probate, and indeed, it took place even when we knew to a biological certainty it was not simultaneous, where, for example, if one person was declared dead at the accident scene and another one wasn’t declared dead until after an attempt to resuscitate in the emergency room, so the declaration of death was manifestly hours later, nonetheless under statute would be considered a simultaneous death because socially the biological categories seemed pointless, and they would drive us to social customs and rules that seemed equally pointless.
Biology also is often ambiguous, but the law can’t afford to be. Here I refer to the phenomenon of so-called intersex. People who have a Y chromosome but are presenting as female, including in things like muscle strength, are nonetheless, because of a Y chromosome, alleged to be ineligible to compete as women in the Olympics, or in the case of one British election, ineligible to stand on the women’s list for a special parliamentary election.
And of course the converse exists – men with double X chromosomes but nonetheless presenting as men, and we don’t know whether or not to call them men or women because we don’t know whether to use chromosomes or genitalia or some other characteristic. Here we know the biology is ambiguous, but we can’t afford the ambiguity; we refuse to have a legal category called “ambiguous” and we force people into boxes so that we can categorize them for everything ranging from which bathroom they get to use to which kinds of social goods they are eligible for to whether or not they are listed as the mother or father on a birth certificate.
And finally, sometimes because of this – despite all of these legal fictions – because of this kind of collective amnesia about the imperfections of biology and the insistence that biology is truthful, unambiguous, clear, and a kind of anchor, a clear beacon in the storm of confusion – sometimes we actually invent biological truths to bolster social constructions that need bolstering and to which we are politically wedded.
And I talk here about the notions of race that have for years been recognized at a genetic level as being flawed and representing more than anything else simple geographic origins, and to a lesser extent, degrees of reproductive isolation in generations past, but in no way represent clear delineations within the human species that would correlate to things like subspecies or breeds. Yet the use of biology to create racial categories was crucial to sustaining the kind of political and social constructions around race that were used in settings as varied as the United States and South Africa.
Now, to me, the connecting threads between the Schiavo case and Roe v. Wade and even Dolly the Sheep (the first animal embryo demonstrably created with nuclear transfer from an adult somatic cell), the connecting threads consist of the phenomenon of sheer biological life. And we tend to concern ourselves mostly when it is sheer biological life with what we call a human genome (and I’m going to put that aside because of course most primate genomes are substantially similar to the human genome) and biological life most particularly that is non-sentient, forcing us to join a debate about the significance of sheer biological existence in the absence of cognition, as Carlos was talking about.
The second thread that connects these cases to me is the degree to which various people and religions accord specific kinds of moral value to non-sentient biological human life. And then the degree to which there is a call for the law to (A) accept the primacy of biology in constructing a definition, and then, because of that, (B) to then attach a particular dominant moral value that correlates with each biological definition that is in play concerning the nature of the life.
One of the ironies I find here that doesn’t seem to be noticed often is the intriguing way in which the debate is often portrayed as religion versus science or religious people versus scientists, or people of faith versus people of empiricism, or however it’s phrased. One of the interesting things is the degree to which, in some sense, there is a reversal of positions. That is, among people who call themselves religious, a frequent argument that will be made is to resort to biology and say, “Look, this embryo has a human genome, or this body in the hospice is a human woman,” and from that biological fact one draws ineluctably the conclusion that certain kinds of human rights accrue from sheer biology. And it’s even in some ways a very limited notion of biology when you get to the abortion and embryo research areas because it’s not even about the embodiment; it’s about just the presence of DNA, and just the presence of a very small amount of DNA that distinguishes this embryo from the embryo of a chimpanzee.
So in some ways, people of faith often are calling upon biology to explain and justify and defend their position, ironically in ways that scientists themselves would never do, because the scientist will say, “Yeah, the DNA explains (or sort of explains because we’re not quite there yet) exactly how tissues arise and how they organize, and what they consist of.” But the origin of consciousness and the origin of a soul to a scientist remains the ultimate mystery. So isn’t it ironic that it’s the scientists who discount the so-called scientism and those people who call themselves religious often adopt it far more passionately than the scientists themselves?
Now, nonetheless, regardless of the source of these kinds of views, I think that the so-called Religious Right (and I say so-called because I think there is not only a shattering of consensus around death and dying, but far less consensus among people who are religious about political views than one might expect, and I hate the phrase “religious right” because it lumps so many people together, although I am impressed by Pew’s attempt to begin to characterize what is really going on), that is, those who come from a religious point of view, are in fact instigating I think a very healthy, very needed fresh debate about the role of government and the meaning of the public square. In the public square, in many ways feels like a lot of the debate is whether or not we are still a “Christian nation.” I will confess here that I am not a Christian, so it may be that this is because of my particular views. You know, in the critical legal studies world you always have to talk about yourself in order to let people understand your point of view. Now, we’re not the only country going through this. Europe just went through paroxysms over whether or not to make references to Christianity in the new European Union Constitution. But we are having that debate too, and we are asking, “If we are a Christian nation, what does that mean?”
Now, in the past, our public culture was indeed very Christian; not only did we have openly Christian prayers in schools or invocations at public events and religious displays; we also had open discrimination against non-Christians or even against the wrong kinds of Christians, such as Catholics, for many years in our history.
In recent years, I think we have begun to move toward an approach in which dissenters are not merely tolerated, which was the great advance in the 18th and 19th century under the U.S. Constitution, but now we are asking to have dissenters made to feel welcome and to feel equal in the public square, which is exactly why the withdrawal of Christian symbology – some forms of Christian symbology – has been felt to be important in order to make that public square more open and more equal to the dissenters.
And this I think accounts for why it is that people who do not subscribe the dominant Christian sects in the United States can feel like the victims. And at the same time, the people who are in those dominant Christian sects themselves equally feel like the victims and feel like they are under attack and under siege because what is happening is that they are, in fact, in a state of retreat from the public square, a public square that they have long felt they are entitled to, with only tolerance of dissenters as opposed to equality of dissenters.
And so I think emotionally we have got a debate in which everybody is feeling victimized, and it is not at all clear that any group feels like it is in charge of the debate or in control. And when people are victims, they begin to act like dogs in a corner and I think you all know what that looks like.
So the question becomes: Is the public square, which in my mind includes the way in which we adopt and formulate public policy, indeed going to be a place in which we are all equal? Because if it is, it not only has to do with whether or not we have crèches on our municipal properties, which I think is kind of ludicrous proxy for what is really going on. What is deeper is whether or not we are going to accept that equality means a degree of restraint on the part of the government when it comes to morals regulation, because people from different faiths and different perspectives have such fundamentally different notions of what personal morality requires. And if that is the case, it is going to lead us next quite clearly to the role of government.
Now, in the case of death and dying, the question is whether the government is supposed to set uniform rules or facilitate individual choice, and we have seen this debate before. In one of the more vivid debates within the Supreme Court, we have the old abortion case Pennsylvania v. Casey. Language from Sandra Day O’Connor about the meaning of liberty, in which she talks in rather poetic terms about the mystery of life and the privilege of determining for yourself the meaning of life, is coupled with Scalia just berating her in his dissent – actually ridiculing the language, saying, “If you have this degree of liberty, then, well, you are also equally free to engage in adultery or polygamy, or homosexuality.” Which of course was prescient, because those were exactly the next debates that followed.
It is indeed a debate about the role of government in dictating, determining and defining personal morality versus stepping back and simply facilitating personal choice while protecting third parties from concrete harm.
Now, there is for many people a belief that death and dying are biological categories that are fixed, immutable, clear, unambiguous, and that these categories must correspond one by one with a particular legal response. Now, not only is Carlos right but these things are rarely as clear cut as we would like them to be, and we also know that they are not immutable even if we accept the blurry edges.
For example, we have watched the United States move from a definition of death that focused on heart-lung function to one that focused on the function of the lower part of the brain or the brain stem, and that is the so-called brain-death definition. And we have also seen how the definitions can vary from country to country, where in Japan death might not be determined by neurological criteria but only by heart and lung criteria. And indeed this is a debate that continues to go on.
I heard on CNN this morning – and I only caught part of it so I don’t know the full story – some dispute up at Montefiore Hospital – I always catch Montefiore because I worked there as a student for a while – in which there is a family apparently objecting to the discontinuation of a ventilator for a child who is brain dead, and one of the debates is over how to characterize the ventilator. Montefiore kept saying “we’re not disconnecting it, but please don’t call it life-sustaining; this is a corpse; this is a dead child with a ventilator. We’re essentially respirating a corpse.” And then the next thing that happens after they ran that clip from the Montefiore people saying “It’s misleading and confusing to call this life-sustaining technology” is that the CNN anchor said the parents are going to go to court to force the hospital to continue the “life-sustaining technology.” It’s an example of how we don’t know clearly how to create these categories.
And furthermore, we worry about some of them because we recognize the slide that is within them. When we moved to a neurological definition of death, we claimed that lower brain function was crucial because it controlled integrated functioning of the body. Essentially, once that was gone, the body was terminal because even with maximal mechanical support, the vast majority of these bodies would eventually wind up disintegrating because the mechanical support was incapable of integrating function as well as a functioning brainstem.
But more and more people began to realize that this was kind of a silly thing to be worried about. Really what was going on was the permanent cessation of consciousness, the permanent cessation of self-awareness, and the permanent cessation of anything that gave this previously occupied body a sense of itself in the world and a purpose in life, which got people nervous about the potential move to redefine things like an anencephaly or indeed persistent vegetative state as forms of death.
Those who oppose what has been going on here often say that their concern is procedural, that they are worried about the criteria and the level of proof needed and not so much about the changes in these definitions.
And to the extent that that is true, I think it is a debate about the tolerability of error. For many years, as was being talked about, we did not tolerate any error that might lead to the discontinuation of treatment that might lead to death, and we therefore forced treatment upon people. But then we began to move toward a change in which we began to be more attentive to the cost to people and their families of unwarranted or unwanted treatments, and began to tolerate the possibility of an error that caused a death in order to avoid a great deal of suffering.
And this shift from a presumption that is based upon what we do in uncertainty, from a presumption against allowing death to a presumption toward allowing it, is what I think is part of this discussion about the move from what is called a “culture of life” to a “culture of death.” And, again, I think people of religion often feel like they are under siege because of that shift in what is broadly called this culture of life and death.
But I don’t think that was all that was going in the Schiavo case, because I think for many people demonstrating outside that hospice in Clearwater, there was no level of proof that would have satisfied them when it came to the discontinuation of nutrition and hydration. Bishop Morlino in Wisconsin recently said that no practicing Catholic ought to have a living will that calls for discontinuation of nutrition or hydration when they are not terminally ill because it is an act of suicide, and therefore it is not permitted according to doctrine.
The challenge here for me is whether or not that kind of view or any view that is similar to that needs to be adopted into law based upon some categories that we claim are clear and unambiguous like alive and dead, terminal and not, or whether these are, as Sandra Day O’Connor would suggest, purely personal decisions because there is nothing immutable and it is fundamentally a social construction that can devolve down to the individual.
The challenge is to discuss moral libertarianism. Without the anchor of biological truths and revealed moral rules, moral libertarianism to some people can feel more libertine than libertarian, and it forms the abyss of relativism. But biology in my view is a false anchor and moral rules are not revealed in the same way to all. For me it is not just a question of whose life is it anyway, but also whose country is it anyway? Thank you.
MR. MASCI: Thanks very much, Professor Charo. And finally Dr. George.
ROBERT P. GEORGE: Thank you very much. When a lawyer, even one who has reduced himself to the status of a mere legal philosopher – (scattered laughter) – looks out and sees not one but two distinguished federal judges sitting in the front row, he impulsively or instinctively wants to begin by saying “May it please the court.” (Laughter.) But I’m honored that Judge John Kern and Judge Tony Cotter are here with us, and we will all await their ruling in the case.
Let me add my thanks to the sponsors of this event. It’s a wonderful opportunity for me personally to be on the panel with my three distinguished co-panelists. I promise to break the consensus.
There is a spectrum of positions on end-of-life issues and on life issues generally; however, a crucial line of division is between those who affirm and those who deny that the life of each human being possesses inherent and equal worth and dignity, irrespective not only of race and ethnicity, and age, sex, and so forth, but also irrespective of stage of development, mental or physical disability, and condition of dependency.
People who deny this proposition frequently distinguish what they refer to as “mere biological human life” from the life of a “person.” It is “personal” life, they say, that has value, even intrinsic value and dignity; “mere biological life” itself does not. And “personal” life is a life of a being who possesses self-consciousness and perhaps developed capacities for characteristic human mental functions or activities such as conceptual thinking, deliberation and choice.
So some people argue that there are human beings who are not yet persons, namely those in the embryonic, fetal, and at least early infant stages of development, and other human beings who will never become or are no longer persons – the severely retarded, the seriously demented, those in permanent comas or persistent vegetative states. For people who hold this view, the question is not when does the life of a human being begin, but when does a human being qualify as a person and not a mere biological human life – and as a person, therefore a creature with a serious right to life.
Those human beings whom they regard as non-persons – human individuals possessing merely biological life – do not possess such a right on this understanding though it may, depending on a variety of possible factors, be wrong to kill them for some reason other than respect for the inherent dignity of persons. Since they are not persons, they can’t have that dignity, but it might be wrong for some other reason.
In contemporary discourse, the view I am describing is often allied (though it need not be) to a sweeping belief in the value of autonomy as a core right of persons. Centrally, the right of autonomy immunizes individual choice against interference by others – including the state – in matters having to do with how one leads one’s own life, especially where one’s actions do not directly impinge negatively upon the interests or rights of others.
So, the thought goes, if a woman wishes to abort a fetus or parents wish by act or omission to terminate the life of a severely disabled newborn, or a person wishes to end his own life by act or omission with the assistance of other willing persons, respect for autonomy demands that others, including public officials acting under color of law, refrain from interfering with these choices and perhaps even take positive steps to facilitate them.
Now, those who oppose abortion, infanticide, assisted suicide and euthanasia, as I do, oppose them because we reject the idea that there are or can be pre-personal or post-personal human beings, or human non-persons of any description; and we do not accept the sweeping view of the value of autonomy. We affirm a doctrine of inherent and equal dignity that acknowledges all living human beings as persons, excludes the direct killing of innocent human beings and demands respect for every individual’s right to life.
Most of us also believe that the law should honor the principle of the sanctity of human life and not privilege the belief in autonomy over it. We view human life, even in developing or severely mentally disabled conditions, as inherently and unconditionally valuable; and though we regard individual autonomy as an important value, we understand it to be an instrumental and conditional one that is morally bounded by a range of ethical considerations. These include, but are not limited to, the autonomy of other people. Many of our opponents take precisely the opposite view: autonomy has intrinsic worth and so-called biological life is of instrumental or conditional value.
I have elsewhere and at length stated my reasons for believing that the life of every human being has inherent and equal worth and for rejecting the proposition that some living human beings are not persons and therefore lack a serious right to life. I have also stated at book length my reasons for rejecting the doctrine of the priority of autonomy and the political principles following from it. I won’t try to rehearse these arguments in a 10-minute presentation.
What I will do, however, is try to give some indication of how I think someone on my side of the debate on these matters ought to think about issues of the sort that came to the fore in the Schiavo case. The position was summed up a few years ago in a statement by the Ramsey Colloquium of the Institute on Religion and Public Life in New York entitled, “Always to Care; Never to Kill.” We are to maintain solidarity with those in disabled conditions, seeking to heal their afflictions when we can and making every effort to relieve their suffering and discomfort.
At the same time, we should bring encouragement to anyone who is tempted to regard his life, currently or prospectively, as valueless or merely burdensome to himself and others and discourage such persons from committing suicide or regarding their lives as worthless. We should certainly not cooperate in suicidal choices or support the practice of assisted suicide or euthanasia.
Now, does this imply vitalism, that is, the view that human life is not only inherently valuable but that it is the supreme value that trumps all others? Does it mean that we must struggle to keep dying patients alive at all costs? Well, no. The key distinction, however, is not between killing and letting die – though I have come to think that that distinction is not always morally meaningless – nor is it between killing by a positive act and killing by not acting, which is sometimes run together with the distinction between killing and letting die or allowing to die; nor strictly speaking is it between the use of “ordinary” as opposed to “extraordinary” means of life support, at least where “ordinary” and “extraordinary” are defined in terms of the complexity or novelty of the technologies employed.
Rather, the key is the distinction between, on the one hand, what has been traditionally called direct killing where death – one’s own or somewhat else’s – is sought either as an end in itself or as a means to some other end, and, on the other hand, accepting death or the shortening of life as a foreseen side affect of an action or omission whose object is something other than death – some good or the avoidance of some evil that cannot be achieved in the circumstances in ways that do not result in death or the shortening of life.
Of course, I should add that the norm against direct killing of innocent human beings is not the only norm that can be relevant to end-of-life decisions; there are norms such as obligations of fairness and equity that apply even in cases of accepting death as a side effect. To show that an act that causes death or a shortens life is not an act of direct killing – is not necessarily to show that it is a morally legitimate act.
Now, there are some classic examples of the distinction that I think that are central. A soldier jumps on a grenade that has been rolled into his camp in a life-sacrificing effort to save the lives of his comrades in arms because his own death, while foreseen and accepted, is outside the scope of his intention. No one regards this act as suicidal or an act of direct self-killing.
More immediately relevant to the issues bringing us together this morning is the case of a patient suffering from a painful condition who takes palliative drugs of a type that he knows (let us assume, for the sake of argument) will result in his dying sooner than he would otherwise. Again, death, though foreseen and accepted, is not the object of the patient’s act; it is outside the scope of his intention, and (we may assume) his willingness to accept death is not incompatible with any obligation he may happen to have to others (though if he does happen to have an obligation to other’s children or family members that is incompatible with that, the moral equation obviously changes).
Now, there are a lot of reasons people in extremis or who anticipate being in extremis may have for declining life support that do not, as reasons, implicate the person in willing his own death either as an end in itself or as a means to some other end. Particular forms of life support may be painful, burdensome, expensive. Where they are, people can certainly choose to forgo them without necessarily willing their own deaths.
So someone who thinks as I do may support, as I in fact support, giving people broad latitude to decide whether to accept life support and whether to maintain it. This is one of the places where respect for autonomy makes a valid claim in the ethical framework I have sketched.
Of course in giving people this latitude, it is to be expected that some people will act on it for reasons that are morally legitimate within that framework. But this is itself a foreseeable but acceptable bad side effect of a policy that has as its aim something perfectly good and legitimate: respecting people’s autonomy to choose among morally acceptable even if tragic but incompatible options bearing on their lives and futures.
But this does not mean that we should accept a right to assisted suicide or conceive the right to decline life support or life-saving medical care generally as a right to commit suicide or to assistance in committing suicide. Nor should we accept policies or practices that are implicitly premised on belief in a right to suicide or assisted suicide or euthanasia.
Terri Schiavo died of dehydration; her death was not the result of brain damage or any other affliction. It was chosen as the precise object of a decision to deny her fluids. She was not “allowed to die,” for she was not dying; contrary to what I heard Al Franken claim on television, she was not brain dead; she was not even terminally ill. The choice to deny her fluids was a choice to cause her death. Those who supported that choice said it was right either because she wasn’t really a person any more – she was “mere biological life” – or that death was what she herself wanted as she allegedly made clear in comments later recalled and placed into evidence by her husband.
Either way, the killing of Terri Schiavo cannot be justified under the moral understanding I defend, and that has traditionally governed medical ethics despite whatever erosions it has suffered in recent years. Under that understanding, Terri was a person with a right to life. She was neither a non-person – “mere biological life” – nor a person with a right to commit suicide. The obligation of others toward her was always to care, never to kill.
Now, does this mean that it is never morally acceptable to withhold food or fluids from a patient? (Let’s lay aside the legal question here – I’m sure we’ll discuss that in the Q and A – and just focus on the moral question.) Is it never right for a patient or individuals making medical decisions on behalf of a patient to decline food and fluids?
Well, some people on my side of the debate have argued that food and fluids must always be administered, that they are hospitality rather than life support, and are part of ordinary care rather than extraordinary means. Now, I agree that food and fluids are in most cases part of ordinary care, but there can be cases – and Carlos has already made reference to them – in which they can legitimately not be administered. That is because there can be cases in which the reason for not administering them is a goal or purpose other than the desire to bring about death.
These are cases, comparatively rare as I understand it, but Carlos can correct me, in which food and fluids are themselves medically contra-indicated because they cannot be administered without causing harm to the patient. Sometimes the problem will be in the administration of the food and fluids and sometimes it will be a consequence of the food and fluids themselves. In either type of case, whether the administration of food and fluids will cause or contribute to morbidity or even hasten death, which I understand can happen, plainly a decision to withhold them need not be a choice to kill.
Now, obviously what I have in mind here was not part of the picture in the Schiavo case. The point of withholding food and fluids from Terri Schiavo was precisely to bring about her death. The problem was not that she could not tolerate the food and fluids or that the administration of them would damage her health; on the contrary, food and water would sustain her in life – a life that some judged to be in itself burdensome both to Terri herself and to others; a life, they believe, she would have wanted to end were she in a position to decide the question for herself.
From the perspective of those who supported removing her feeding tube, doing so was a means of ending her life; it was not a side effect of a choice whose object was something else. It was a choice justified in their view (but not in mine) to kill – a choice the moral logic of which is indistinguishable from a choice to have ended her life a little more quickly by, for example, administering a lethal dose of the sort permitted in some circumstances under the assisted suicide laws of Oregon and the Netherlands. Thank you.
MR. MASCI: Thanks, Dr. George. Thanks to all of the panelists for their excellent presentations.
Now I would like to bring the audience into the discussion. Before I do that, though, let me remind everyone that we have quite a few people here today. We don’t have as much time as I would have liked for Q and A, and I would like to give as many people a chance to ask questions as we can permit. So I would like to ask folks who do get up to ask questions to please refrain from making long statements or comments, and to limit their remarks to questions, and finally, to try to keep those questions as brief as possible. Thanks very much.
ED WHELAN: Ed Whelan, Ethics & Public Policy Center. I have a question for Professor Brock and Professor George, and this really goes to how far the autonomy principle ought to extend, and how reconcilable an aggressive version of that profession is with our foundational principles and the values that we have come to embody in our Constitution and in the law. And what I mean specifically by that is if you take the autonomy principle seriously as an overarching principle, you would have to justify not only suicide but also selling oneself into a slavery, also my right to sell my heart to someone who needs a heart transplant in order to raise money for my family.
Now, we of course have at the outset in the Declaration a statement that certain rights are inalienable, which is a statement that we ourselves may not alienate them; that same principle is embodied in the 13th amendment, which prohibits me from selling myself into slavery. So once we get behind this sort of consensus that so-called experts have and examine how far this principle of autonomy really ought to go, what limits do we see on it?
MR. BROCK: just to break the consensus down further, I told Robby when he sat down I withdraw the claim about consensus. (Scattered laughter.) I don’t withdraw the claim about consensus in public policy but I certainly withdraw the claim about consensus – (chuckles) – in the front of this room.
I would write and have written on a number of occasions in support of permitting physician-assisted suicide, so I would extend it to that. In fact, I would extend it as an ethical matter – I think as a public policy matter, the question is more complicated – to euthanasia.
Now, in what sense is the right inalienable? Well, one could make the argument that selling oneself into slavery – if what one means by that is one gives up every capacity and authority to make decisions about one’s life – is to give up one’s autonomy. Not many people have ever tried to sell themselves into slavery as far as I know, even when slavery was around as a possibility, but it could be argued that it would be an exercise of one’s autonomy to give up that status as an autonomous being for something of greater value.
Robby gave the example of someone who gives up future autonomy by falling on the hand grenade to save his fellow soldiers. Well, he has given up his life and he has certainly given up his future exercises of autonomy, but I would take it that that is an exercise of autonomy. Robby would say the intent is to save his comrades, knowing that the consequence of that will be the loss of his life, but in any event, it’s a known and expected giving up of one’s life and future possibilities of exercise of autonomy.
So I think the right shouldn’t be understood as inalienable – take the right to life as the right to autonomy. The right to life shouldn’t be understood as inalienable where by that what one means is that one can’t justifiably take actions that you know will lead to the end of your life or even in my view that you intend to lead to the end of your life. And likewise with regard to the right to autonomy, it shouldn’t be understood to foreclose actions that would lead to the end of your future exercise of autonomy by ending your life.
Now, I think we might have public policy reasons to put constraints of one sort or another on individuals’ exercising their autonomy, and I think we need to take those cases one by one and see what the public policy grounds are. But I would give I think more weight to that claim to autonomy than anyone else on this podium – well, maybe not to Alta. (Chuckles.)
MR. GEORGE: Well, I’m sure that’s true, and as I say I have written a book that is devoted to criticizing contemporary liberal theorists who have made arguments in favor of a sweeping idea of autonomy, or treating autonomy as a master value in political theory in the sense that I think Dan does.
Now, having said that, and having stated at book length my reasons for rejecting the sweeping value of autonomy, let me say that there is no such thing as a political theory that doesn’t have its difficulties and problems. It’s one thing to criticize somebody else’s theory; it another thing to present a theory that is really immune to criticisms and puzzles and dilemmas. So I don’t want to announce that liberal autonomy theory is not only terminally ill but dead and that I have killed it with a stake through the heart.
MR. BROCK: Killing would be wrong. (Scattered laughter.)
MR. GEORGE: Well, maybe not for liberal theories! Perhaps I would make an exception there. (Chuckles.) So the challenge I think for the liberal theorists – for Dan and people on his side – is to come up with plausible moral reasons (consistent with their own ethical premises) for constraints on autonomy that they hold are justified. When Dan talks about public policy reasons and going case by case, yes, I can go along with that, but at the end of the day, those public policy reasons are going to have to be morally informed. It will be moral considerations that are going to shape the public policy reasons – reasons that will justify impositions on autonomy, whether by the state or by private parties impinging upon other people’s autonomy.
I do think this is a problem for liberal theory, a problem to which some of the finest minds in the liberal camp have devoted their attention. People like the late Professor Rawls and Professor Dworkin and others have put their shoulder to the wheel here and tried to come up with a way of justifying those constraints that they think ought to be placed on autonomy in view of the fact that they do give to autonomy such a central role. Of course, they don’t always put it in terms of autonomy. Professor Rawls, for example, generally did not. Professor Dworkin makes autonomy derivative of a right to equality; his approach is more along the lines of what Alta endorsed.
I myself think those efforts have been unsuccessful; and here, too, I’ve stated my reasons for thinking so in various writings. But those guys think that efforts by guys on my side have been unsuccessful, so people who are interested will do best simply to read the writings of people on both sides and decide for themselves who is right. In any event, I think there is a big problem at the moral core of contemporary liberalism.
And one final thing: liberal theorists really do need to provide some moral justification for the priority of autonomy. It is not self-evident. At the end of the day, those on Dan’s side do have to provide a compelling moral argument for treating autonomy as the master value in the way that they do. The problems are not simply that they’ve got to come up with ways of justifying constraints that they and everybody else think have to be placed on autonomy. I should also mention here that the late Joel Feinberg, a superb liberal theorist, noticed this problem and struggled in a Herculean way to meet it. But he did not succeed.
In any event, liberals have to come up with a justification for placing autonomy in the central position in the first place, and that requires the defense of a moral proposition. They can’t (and sophisticated liberals like Rawls, Dworkin and Feinberg know they can’t) appeal to moral relativism or to doubt or anything like that. It’s a moral proposition that people deserve to have their right to autonomy respected in that way. That proposition requires a defense.
MR. MASCI: Do either of the other panelists want to respond to that question?
MR. GOMEZ: Sure. Let me just say a couple of brief things, being the lone non-philosopher lawyer on the panel. These are elegant, and in fact useful, theories up to a point. When you actually see the theory walk it stumbles in some fairly dramatic ways.
I’m much, much closer to Robby’s position; in fact, almost identical to Robby’s position for a variety of reasons. But let me make a couple of comments about autonomy and the reality of autonomy. Autonomy is actually a fiction. Now it may be a useful fiction and it may be a fiction that’s prudentially appropriate for how a society with varying degrees of beliefs ought to conduct itself.
Patients don’t exercise their autonomy when they come to me. They come to me for a variety of reasons; typically because they are quite ill, or in my particular case because they are dying and in pain, or symptomatic. That may or may not be an exercise on autonomy, but it’s not the driving force, and to give it that sort of weight strikes me as missing the point altogether. There’s a different phenomenology here; there’s a different interaction. And to talk about what happens between physician and patient, or between nurse and patient as an exercise in autonomy, or as a transaction, if you prefer, misses the point altogether. It may be useful in the law, it may be useful in public policy, but it misses something quite essential.
The second thing that I want to say – and this goes a little bit to what Robbie said – is that there is a gross, gross, gross mistaken belief that palliative care shortens the life of patients with opiates and other medications. I mean, it is so grossly inappropriate that there’s an article in the Lancet – I can give you the reference if you want – where they looked at patients with end-stage COPD – end-stage lung disease – and they treated one group, quote, “normally,” and they treated another group with palliation – palliation including morphine. Guess who survived longer? Guess who did better in terms of their perception of their own quality of life?
And so what I want to suggest is that this idea that we are invoking the principle of double effect with palliation or hospice care is just flat-out wrong. It is just flat-out wrong, and again, it’s I think a piece of misinformation that goes out there. When Mr. Schindler was talking about the death of his daughter, one of the things that he said, which I bristled at, was, “Well, the hospice is giving her morphine, which is going to bring about her death.” And again, irrespective of how one comes down on that position, let’s make sure that we have the facts and argue the facts appropriately here.
MR. MASCI: Actually, before we go to the next question, when you said autonomy misses something essential in this sort of doctor-patient relationship, would you elaborate a little bit more on what that means in the real world?
MR. GOMEZ: Yeah, I’ve never had a patient knock on my office door, come in, sit down, and say, “I’m here to exercise my autonomy.” Now I may be a little too glib there, but what I’m suggesting is that one of the reasons that they are coming to me is precisely by nature of what I profess as a physician, by nature of what I know in terms of my skills, and also by nature – and on this I think Robby is dead on – by nature of the fact that there is a moral construct to what it means to be a physician or a nurse, or any other professionals that professes publicly what they’re going to do. You come to me not to exercise your autonomy; you come to me because of something that I have, that I have professed publicly is necessary for you. Now within that constraint, do I give autonomy a tremendous amount of latitude the way Robby suggested? Absolutely. I can’t force my decisions on patients. I think that is a form of violence.
But to talk about this as an exercise in autonomy, I think, quite simply misses the psychology of what happens between people who are ill and people who are trying to take care of people who are ill.
MR. BROCK: They never say I’ve come to you to exercise my autonomy –
MR. GOMEZ: For a reason.
MR. BROCK: Of course. Because it would be pointless. But in choosing to come to you, they have made a choice, an exercise of their autonomy in choosing to come to you, understanding you are a professional of a certain sort who will do various things for them as opposed to not coming to you or as opposed to going someplace else. So there is an exercise of autonomous choice there, and –
MR. GOMEZ: Let me just – and I apologize for interrupting you, but let me just suggest something that the evidence is very much against you. I would defy anybody who is uninsured in this country to talk about an autonomous decision to go see a physician or a nurse. They come, again, not in terms of exercising autonomy; they come because of very specific need. How that is exercised within the context of what they chose to do – and I’ll give you that; that they chose to do it – is in fact an exercise in autonomy.
But to suggest that everybody in the United States, or that people generically, have enough information to make autonomous decisions is a fiction, and you are imputing something to people’s actions which simply, I would say, doesn’t exist.
MS. CHARO: Because of this last exchange, I just wanted to emphasize something that actually Robby George said, which is that there is a different way of discussing this, which has to do with equality doesn’t premise itself on a kind of assertion on an unfettered right of people to do everything they want all the time – whenever they want and however they want it. It asks to what extent must we tolerate individual choice because it helps to further equality among people and participation in a democratic society.
And the reason I wanted to emphasize it after this exchange is that Carlos himself had emphasized that some of the opposition to the withdrawal of food and water in the Schiavo case came most dramatically from the Latino and African-American community, and he himself said it’s not clear exactly why. It’s not absolutely clear that it has to do with religious views, and I’d like to suggest another one that goes back to equality issues, and that is that in a community that is disproportionately uninsured or underinsured, or where “insured” is insured in the least attractive medical systems, through Medicaid, it is unlikely that those people are going to interpret the autonomous right to decline treatment as something that furthers equality because they have yet to experience equality and are still looking to get treatment, and are far away from the moment at which autonomy is relevant to the question of equality through the refusal of treatment. It’s kind of like asking starving people to worry about the problem of bulimia, right? And so I do think that there’s a link in these conversations that is worth exploring in our understanding.
MR. MASCI: Thank you. Let me jump to the next questioner. Why don’t we please Dr. George and let a judge ask a question.
JOHN KERN: My name is John Kern. I’m a senior judge on the D.C. Court of Appeals. My question is directed to Dr. Gomez, following up on a point he made, that he guessed – I think correctly – that very few people in this audience are doctors or nurses, and my question is why do you think that the medical and nursing professions do not appear to take such an active part in the important discussion that we’re having today? Hopefully I’m not maligning those professions, but it just strikes me that since this all revolves around medical care and care toward the end of our lives, I would think that the nurses and physicians would want to express their views based on the hard evidence of watching these people live and die, and watching all of us ultimately live and die. So that’s my question: why don’t those professions speak out more directly and more visibly? – and maybe I’m missing it, and maybe they are.
MR. GOMEZ: I think that’s a wonderful question for a couple of reasons. One is there is this thing called invincible ignorance, and the question of whether physicians are teachable or not is still up in the air, as far as I’m concerned, and that’s my own profession, and I can say that. (Laughter.) I mean, I’ve tried for 15 years. I’m a physician, but I speak on public policy all the time, and you know, when I do it in front of a medical audience, their eyes tend to glaze over. So you know, one reason may be that it’s a self-selected group – perhaps. Or maybe we beat that out of them in medical school and residency trainings, and I would suggest that’s another possibility.
The last possibility here – and again, this is going to sound more cynical than it actually is – is because we’re professional cowards. And when Robby talked about the idea of erosion of medical ethic, there is another way of thinking about that. But if in fact there is a medical ethic intrinsic to the profession of medicine or nursing, if in fact what we do has inherently an ethical basis, and I would say that it does – at least, traditionally it has – not to opine on these things is an abrogation. It’s an abdication of our role in society. It is in fact not to behave well as a physician.
And one of the things that I would go even further to say is if you look at the etymology of the word “doctor,” it comes from the Latin “duco,” which is where we get the word “education.” Part of the function of a doctor, which is what we are, is in fact to educate, not just our patients, but the public at large. Not to do that is a disaster, and one last comment – the group that ought to be doing this it the AMA. And my opinion of the AMA is only slighter higher than of Enron. (Laughter.) There have been opportunities for the last 40 years for the AMA to opine and to influence policy in what I think would have been some excellent ways, and we have simply stepped back.
MR. MASCI: Thank you.
BRADFORD WILLIAM SHORT: Bradford William Short, Catholic Family and Human Rights Institute. This is all very interesting, but I want to go back to one of the first questions that was raised, because all the comments didn’t really speak to his question. Kant in his lectures on ethics states that to kill oneself is to use a choice to destroy the power of choosing itself. What the questioner is alluding to is the fact that even if you assume a kind of primacy of autonomy, you don’t get to a view of these issues different than the one that Dr. George puts forth.
And I just want to also point out that Dr. Brock, your response about people not selling themselves is to some degree rather glib. It was radically important to the people who overthrew tyranny in England, in the Glorious Revolution of 1688 and to the people in America in 1776 that they disprove the notion that people would voluntarily give themselves to their kings as slaves because if they could have done that, revolution became impossible to justify. And you can say that’s a very meaningful decision because very many people wanted to be slaves for all sorts of religious and, shall we say medieval reasoning, before the Age of Enlightenment, before the Age of Revolution.
And furthermore, many people argued that a great many black Africans and kingdoms had also given themselves to their kings, and historians think that there is some degree of truth to that. And if those kings then sold themselves and sold their subjects into slavery to the people who became the European slave traders, so when the first questioner brings up the 13th Amendment, he’s bringing up the culmination of a fundamental principal in Anglo-Saxon thinking, running back to 1688. And the question is, Dr. Brock, do you even have autonomy on your side? – it’s not whether or not Dr. George and other Thomists are right to put autonomy down or up or to the side or in the back.
MR. MASCI: Dr. Brock.
MR. BROCK: I think that question is directed to me. (Laughter.) I wouldn’t interpret autonomy in the way that you quite correctly said Kant would. You said my view was – I forget exactly, but it was subject to Robbie George’s challenge. Suppose we believe that autonomy should be understood as never permitting us to take actions that we know will eliminate our capacity for autonomous choice. And so for example, as you correctly noted, Kant opposed suicide on this ground.
Look at the far-reaching consequences of that view. When a patient decides to stop a life-sustaining treatment, the patient typically says to himself or herself – certainly implicitly invokes – the following judgment: “The best life possible for me with treatment is sufficiently poor that I take it to be worse than no further life at all.” And that means the person is choosing death now as opposed to continued life of the best form then possible to them. Now that is to choose to end one’s capacity for autonomous choice. If we understood autonomy as incompatible with that, then we should never accept patients’ rights to stop life-sustaining treatment in my view, at least never when what they are invoking is that judgment.
Now I would not – without going back to the sort of historical parts which I wouldn’t especially want to challenge you on – I think that there are at least two sides to Kantian thinking. One side to Kantian thinking emphasizes autonomous choice. Another side to Kantian thinking – and this is too glib as well – but another side to Kantian thinking is to think of individuals as ends in themselves, having intrinsic value and having to be respected as having that value. If you emphasize that second side to Kantian thinking, then you will put limitations on autonomous choices that would destroy that intrinsic value. I would move in the direction of that first thread of Kantian thinking and away from that second thread of Kantian thinking.
MR. MASCI: Thank you.
MR. GEORGE: And I agree with Dan’s basic account of Kant’s thought here, but I’ll take it in the direction of the second thread – I’ll of course. May I briefly just go back to a previous question? As much as I love disagreement and dissent, I think that on one point on which Carlos and Dan thought they were arguing, there’s not actually a disagreement. If I’m wrong about this, and there actually is disagreement, I’d like you guys to tell me where the disagreement is. I don’t think, Dan, you were arguing that the norms of the medical profession themselves are shaped by the overarching commitment to autonomy. Maybe you were, but I didn’t hear you say that. And Carlos, I gather you don’t dispute that when a patient comes to you, that patient is exercising autonomous choice and when that patient speaks with you about options and you present to the patient options, you are interested in him exercising his autonomy to choose among those options, right? So there’s no disagreement there.
I’ll just make one final point here. I think what that means is that it’s important to understand that when a patient exercises his autonomy to come to the medical profession and to collaborate with the medical profession in care, he is coming to a profession that has its meaning and significance and self-understanding and structure shaped by a set of moral commitments in which autonomy figures, but not as a master principle. So, there’s no disagreement about that.
MR. GOMEZ: I don’t think there’s any disagreement about that theoretically. The way that I responded, though, was that when you make this theory walk, it stumbles because that’s not what happens in the transaction. I’ll give you one example that’s going to be very unpopular, but I will bet you that 99.99 percent of decisions in ethics committees in hospitals, which include nurses, physicians, social workers, chaplains, etc., use the principle of autonomy as the exclusive or almost exclusive principle to use in making these decisions. And what to me is very interesting, having served on ethics committees for a long time, is that when in fact you actually go and talk to the patient or talk to the family, that’s not what’s being talked about at all.
If what we really want to get to is better care of human beings rather than the prudential question of how should public policy shape this, I go back to what the judge said a little bit earlier: there is something else at work here. Is it ultimately going to resolve these problems? I don’t know, but it may contribute something much, much more useful than whether we’re autonomous beings or not. I still think autonomy is a fiction for a variety of reasons. I think there are ways in which we have self-will, self-determination. I think that is true to some extent, but it’s more contingent than you would ever, ever want to believe. And the more we understand about the psychology of human beings and the more we understand, in fact, about neuroscience, the less and less convinced I become that we are always acting, quote, “autonomously,” whether that has implications for public policy or law or not, I’m not qualified to answer.
MR. BROCK: I’ll accept Robby’s reconstruction. (Laughter.)
MR. MASCI: Let me move this discussion on. The gentleman right here.
CARTER SNEAD: Thank you. Carter Snead. I’m with the President’s Council on Bioethics. I have just a general question and I don’t mean to keep the trend of every question being directed to Professor Brock going. If one begins with the notion that autonomy is the most important value to be vindicated in making determinations for now incompetent patients, what sort of safeguards should be in place to make sure that their wishes are in fact vindicated, rather than having – under the guise of vindicating their wishes – others imposing their own wishes?
And you admit in some cases in certain states, Florida and others, there’s a clear and convincing evidence standard in place: if a surrogate wishes to exercise the now-incompetent patient’s right to refuse life-sustaining measures and there’s no advance directive and there’s no memorialized expression of the now-incompetent patient’s intentions regarding that, the burden is on the surrogate to demonstrate by clear and convincing evidence that that would have been the decision that the now-incapacitated person would want to make under the circumstances.
Now you proposed an alternative which I think is an inversion of that, namely the surrogate can act and will only be restrained from acting if it’s shown that they are acting against the interests or wishes of the individual. So do you regard the clear and convincing evidence threshold as overly restrictive? Or what sort of formal rules should be in place to avoid the possibility of abuse where there are people who can’t speak for themselves and we’re trying to divine what their intentions would have been?
MR. BROCK: Yes, I do regard that standard as mistaken. In particular I oppose applying it to withholding or withdrawing of care as opposed to providing a particular treatment. The evidence I spoke about in particular referred to patients in persistent vegetative states and the large majority of the public said they would not want treatment under those circumstances. What I think the standard ought to be – well let me back up one step. The way in which some people give authority to others, and a significant number of Americans do this, is either to fill out a health care proxy — in Massachusetts where I now am, there’s a Massachusetts health care proxy law, by which you can name who you want to be your surrogate – or durable power of attorney statutes which now exist in most states. You can name a surrogate, and those statutes typically specify what the limits on the surrogate’s decision-making authority are and I mentioned them in my earlier remarks. They specifically say that the surrogate has no authority to make a decision which is contrary to the known wishes of the patient.
So that means that if there’s evidence that the patient wanted X, the surrogate isn’t authorized to make a decision for not X. That I think is appropriate, because the patient has told us that is who he or she wants to make the decision. So that seems to me to create some presumption for respecting those decisions, except if the decision is contrary to evidence that we have of what the patient wanted, or – and the second qualification to the authority is, in the absence of evidence about what the patient wanted – if the decision is and it’s usually put in terms of, contrary to the fundamental interests of the patient.
So that means, I think, that there ought to be a rebuttable presumption to accepting the surrogate’s decision. And that means there shouldn’t be a clear and convincing evidence standard in order to make a decision to forgo a life-sustaining treatment. The standard should at best be something like the preponderance of the evidence, but even that is in a sense stronger than I would want, because most people, if they tell you, “Well why would you want your wife to decide for you? Why would you want your wife to be your surrogate?” Well, in some ways, the initial answer is going to be, because she’s my wife, right? (Chuckles.) And you know, that speaks to the whole relationship of the way in which you know each other, the way in which you have commitments to each other and so forth and so on, the significance of the family. Now also I would want my wife to be my surrogate because I think she knows my wishes better than others and because she would care about me and care to get a decision that would best serve my interests and wishes. But in significant part it’s because she’s my wife, and I want her to have some discretion in making that decision. So the preponderance of the evidence standard to some extent is itself too high. And that certainly means the clear and convincing standard in order to only forego treatment, not to institute it, is too high.
MR. GEORGE: Well, I certainly disagree with Dan about the clear and convincing evidence standard when it comes to the presumption issue. And it doesn’t make a lot of difference to my argument (although it figures in Dan’s argument here) what the polls tell us about the American public’s preferences. But to the extent that it matters to anyone, I would encourage you to read Noemie Emery’s article in the current Weekly Standard reviewing the polling data on the Schiavo case and on people’s opinions on end-of-life issues, and see how the author of that article is able to show that it really does depend on how the question’s asked and on the degree of information that’s provided by the poll taker on the question. So I myself, if any of my argument were vested in or dependent on the polling data, would want to be really careful about how much credibility I give to the polls.
MR. MASCI: Professor Charo, you wanted to comment on this as well?
MR. CHARO: Yeah. Carter, I think the question actually has two pieces in it, one is the standard and the other is how one proves that the criterion for the standard has been met. And we haven’t really talked about the latter, but certainly a big part of what was going on in the Schiavo case was an argument made by many people that the Florida state courts either had gotten it wrong or were the wrong place to try to get it at all. And of course, we have traditionally looked to courts for fact-finding and adjudicatory functions in the area of family law and this kind of personal life regime; we have traditionally looked at state courts. Nobody can claim that they are infallible. They certainly make mistakes. It’s a little bit like the democracy problem. It’s the worst of all systems except for all the others, right? I mean, who else in that picture – the unreviewed beliefs of the parents, the governor of the state, the president of the United States, the U.S. Congress – who is truly in a better position than the courts, given that all of those are fallible in terms of assessing?
But going to the direct standard, I appreciate why it is that people want to be very cautionary: because they don’t want to have incompetent patients have life support discontinued against what would have been their desires. But I also find myself in a quandary here because I, taking a page I think out of both Dan Brock and Carlos – I don’t believe that many people want to fill out these forms the way they’ve been set up. You know, I hold a durable power for somebody and somebody else holds mine, right? But for the person I hold it for, what she said to me was, “When my mind goes, let me go.” Well, what does that mean? I think it’s pretty clear in persistent vegetative state, but it’s not at all clear to me if we had a decline for Alzheimer’s and it was a steady erosion.
But there’s no clear demarcation of the mind going and there’s some perception of the world, and I don’t know exactly what it means. And in addition, people sometimes talk not about the particular treatments, but about their particular fears, right? She said, “I’m claustrophobic and the thing that scares me more than anything else is having a ventilator tube stuck down while I’m confused.” Which again is not the way that these things are written. And so what’s happening is she’s trying to communicate to me, right? And this is somebody who’s older, so she’s really thinking hard about these things. She’s trying to communicate to me how she would go about making these decisions. And what I would like in an ideal world is to be able to take that very inchoate information and act on her behalf, trying my hardest to do whatever I think she would have done to think it all through.
The dilemma here is that the very person who is in the best situation to do that – who would take this very confused, very idiosyncratic information and parse it through a lifetime of experience with this person – is also going to be the person most likely to have fundamental conflicts of interest, whether it’s being an heir or it’s simply the emotional devastation of having to care for or simply witness somebody else’s long-term suffering. And this is the quandary that I’m in. I would love to be able to loosen these things up, not for some of the technical reasons but simply because the criteria has been made inappropriate for the way in which people think, but I don’t really know yet how to completely get out of the conflict-of-interest problem. And conflict of interest is usually solved either by removing what in this case would be the best decision-maker or by imposing very strict, rigid, categorical criteria that hamstring the potentially conflicted decision-maker. And if somebody has a good solution for this, I am open to discussion.
MR. MASCI: The gentleman right there.
EDWARD GRANT: Edward Grant, I’m a judge on the Board of Immigration Appeals in the Department of Justice, but nothing I say has anything to do with my job. Those of us who have been at this for a little while, as the Schiavo case moved along, I think we’re, at least speaking for myself, somewhat startled at a case which, had it been decided in Massachusetts or New Jersey or indeed Florida in the 1980s, would have turned out the way that this case turned out. Now there were obviously other factors here in terms of family conflict which were not present in the precedent cases from the aforementioned jurisdictions that were litigated 20 years ago, so, getting back to the notion of consensus, it was sort of odd that this came up. And I think we went back to some of the reasons why this case, despite the fact that we decided feeding tube issues for PVS patients seemingly a long time ago, why this issue rose again with such ferocity.
What I’m more interested in though is had we had this forum without the Schiavo case having occurred or been as prominent, I would have expected we’d be talking about some other things that perhaps were more prospective, that have been tried in one place in this country and other places in the world and maybe getting a sense where the panel sees or individual members see that debate going with regard to assisted suicide and euthanasia and perhaps conveying some information which I don’t think many of the people in the room have. I don’t feel I do, even though I follow this stuff, exactly how far things have gone in some jurisdictions with regard to these practices. I think that would be very useful.
MR. MASCI: Anyone like to address that? Dr. Gomez first?
MR. GOMEZ: Two thoughts. One is, I have studied the situation in the Netherlands and theoretically, if one were a proponent of autonomy – in other words, if one said that the choice to participate in assisted suicide is what ought to reign – I would argue that there are enough cases there that would give lie to that, that that in fact, is the dominant philosophy. Now whether we would follow along the same pattern or not, only God knows. But there is some data that suggests to me that what looks again like a theoretical exercise in autonomy becomes something else in practicality. So it’s a prudential question for me. Whether it’s a theological matter or a philosophical matter again, is beyond my ken, but as a prudential question, I’ve watched this evolve, and it’s not the way it works itself out.
But let me give you something that I think is going to be much tougher for this country to decide, and I think it’s what Alta referred to with durable power of attorney or the proxy that she has for her friend. There is a demographic wave that is hitting us now that has to do with elderly patients, elderly people. And epidemiologically we know that the older one gets, the likelier one is to have a dementing illness. So we are having 75, 80, 85-year-old people with extraordinarily strong hearts, kidneys and lungs where their decline has to do specifically with their cognition. At what point, if ever, does one say, “You don’t do X, Y, or Z”? Forget tube feeding for just a second. When does one not treat urosepsis? When does one not treat congestive heart failure? When does one not do X, Y, and Z? We haven’t even touched on that. We haven’t even come close to thinking about that. And once again – (chuckles) – and I know I sound like Johnny One-note here, but autonomy ain’t going to be useful.
MR. MASCI: Dr. Brock.
MR. BROCK: Well Carlos and I first met on a PBS show about assisted suicide I guess 15 years ago, was it, Carlos? And we disagreed then roughly the way we do now, so –
MR. GOMEZ: I’m unteachable.
MR. BROCK: So am I. But I think, at least in identifying the underlying ground for assisted suicide, the Ninth Circuit Court back in its decision in Washington v. Compassion, I guess it was, had it right. I do see a right to obtain assisted suicide from a willing practitioner to be, in a way, the last extension of people’s rights to make decisions about how and when they will die. And its underlying moral basis, at least in my view, is the same underlying moral basis that supports what we have – I’m hesitant to say anything about what we have come as a consensus to accept, but what I think public policy has accepted, which is patients’ right to decide about life-sustaining treatment and to refuse life-sustaining treatment. So I do think the underlying world basis is the same. Now I know the others up here won’t agree with that.
I have in my briefcase behind me, and I’ll make this brief for the Drug Enforcement Agency to rule that it’s against professional practice of physicians to prescribe medications for the purpose of patients ending their lives. That’s where, as you say, the coming issue will be decided in the next term of the Supreme Court. Obviously it’s clear which way I hope that decision goes. I think that’s an inappropriate use of the drug control statutes to intervene when Oregon has adopted as a matter of public policy in its state that assisted suicide should be permitted.
Just one other comment with regard to Carlos’ references to the Netherlands. We do have some evidence in this country – assisted suicide has been legal for, I believe, seven years in Oregon. It’s carefully studied. The Department of Health in Oregon each year provides a report on the exercise of the practice, including numbers – the numbers have not grown. In the last year, there were approximately 60 prescriptions written by a physician under the authority of this act. People haven’t been flooding in. As far as I know, even among opponents to the practice, there aren’t at this point any credible claims that the kind of abuses that were feared initially have in fact come to pass. Maybe you disagree, but I would read Oregon’s experience over the past seven years as telling us that at least at the public policy level, the practice can be carefully controlled so as to do essentially what the citizens of Oregon said they wanted to permit to be done. Now whether other states will join in Oregon, none have certainly up till now. I’m not a good predictor. I thought Clinton’s health care plan might go through. (Laughter.) I would support that extension as an extension of people’s rights to control the time and manner of their death.
MR. MASCI: Now quickly, Dr. George.
MR. GEORGE: First of all, I don’t think that it’s accurate, looking at it now as a sociologist might, to understand the Schiavo case as a case that’s just about autonomy and the question of autonomy and its scope. I don’t think one can account for the outcome in the case unless one factors in the fact – what I regard as the fact – that key decision-makers in the case not only were interested in Terry Schiavo’s autonomy as it was allegedly expressed to the husband in earlier conversations, but also their judgment that her life was a life just so debilitated and in such a poor condition that it really was non-personal life and not worth preserving or protecting. I think you need both features of this: the autonomy feature and the idea of a life that really doesn’t have value to get the outcome that we actually got in that case. Another case might be different, but I think looking back at it from a sociological standpoint, you would have to reach that conclusion.
A second point: is this relevant to the debate over assisted suicide? Yes, I think it actually is. I think a lot of what’s going on in the Schiavo case is about the debate over assisted suicide, and here’s how. I think the parties in a kind of subterranean way were trying to argue for their respective points of view on the question of how to conceive the right to decline or withhold treatment. Put simply, the question was whether the right to decline life-saving care is or is not to be conceived in such a way as to make it logically indistinguishable from a right to assisted suicide. In other words, should it be conceived in the way that Dan would like it to be conceived (so that it would implicitly include a form of assisted suicide), or should it be conceived, as I would argue it should be conceived, in such a way as to make clear that the right to decline care isn’t rooted in a right whose logic takes us to assisted suicide, but in a different set of ethical and practical considerations?
MR. MASCI: Finally and briefly, Professor Charo.
MS. CHARO: Well, I think it’s a wonderful segue from what Robby George was just talking about because I think that there’s another under-discussed aspect to this which is that there’s something cruel about the way in which we have decided that withholding and withdrawing care or withholding and withdrawing nutrition and hydration, even if you think of it as a hospitality right, is somehow less problematic than suicide. I mean, after all, let’s think about this for a second. What is easier for people – to be given a quick and merciful death, or to have an agonizingly long death because they have to somehow do it in a way that conforms with this theory of autonomy that lets you refuse things as opposed to getting to what you’re trying to get to?
And here, I must confess, I find Dan Brock’s explanation of what’s going on more accurate in terms of my perception of how people approach these questions, which is, given my choices, I would rather be dead than live this way – you know, having cared for somebody with Lou Gehrig’s for a long time, it wasn’t that I want to avoid this pain, even if death is the cost. It’s that I would rather die than live like this. It’s a decision reached after a very long time. And cruelly, the only option for her was the withdrawal of a ventilator, and she was terrified of suffocation. Whereas you know, the kind of merciful shot – this is what she wanted – was denied. And so, in a way, we have boxed ourselves in through legal theories to a situation that is unbelievably cruel and quite contrary to any kind of care of person.
And although I appreciate that there are these Kantian arguments about why suicide is impermissible, I believe that a lot of people are not approaching this from Kant because they’ve never read Kant. I think a lot of people are likely approaching this out of a whole lifetime of religious teachings that are premised on the idea that life is a gift from the divine and it is inappropriate to decline the gift or waste it or in any way disrespect it.
But going back to my theme about equality, there were many of us that were not raised in that tradition, who see life not as a gift from the divine but as an opportunity to do good for others, and it’s about duty and service. And therefore when you become incapacitated, that suicide is not disrespectful of the divine gift, but it is a natural, logical conclusion to the inability to further your purpose on this earth. And I would ask why any one particular moral, religious or even just idiosyncratic vision that happens in 1999 or 2005 to be shared by the majority of Americans should be embodied in public policy that renders those who have different views functionally less equal and less entitled to pursue their own vision of life?
MR. GEORGE: (Off mike) – equality itself requires some justification and we wouldn’t want to rule out a justification that began along these lines: We hold these truths to be self-evident, that all men are created equal, endowed by their Creator with certain unalienable rights . . . . So a simple rootedness of a moral view in a religious tradition is far from a knock-down case against its validity as a universal principle or a ground of public policy.
MR. MASCI: I’m afraid that that’s going to have to be the last word. I want to thank all of your for coming and I also want to apologize to the people who didn’t have a chance to ask questions. Most especially, I want to thank our four wonderful panelists for their clarity of thought and insight today.
(Applause.)
(END)
