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Bioethics And The Obama Administration
TERRY GROSS, host:
This is Fresh Air, I'm Terry Gross. Health insurance, stem cell research, problems at the V.A. hospitals, a weak public health system, these are just some of the health-care-related issues facing President-elect Barack Obama. We asked bioethicist Art Caplan to take a look at some of the tough choices Obama will have to make. Caplan directs the Center for Bioethics and chairs the Department of Medical Ethics at the University of Pennsylvania. Last month, Discover magazine named him one of the 10 most influential people in science. The entry said, quote, "Caplan has sorted through the ethical traps of science for the United Nations, the National Institutes of Health, the President of the United States and the Olympics and has written or edited more than 30 books and 500 articles," unquote. A little later, we'll talk with Caplan about yesterday's announcement from the Cleveland clinic that doctors there had just performed the first face transplant in America and some of the important ethical questions that raises. Art Caplan, welcome back to Fresh Air.
Mr. ART CAPLAN (Bioethicist; Director, Center for Bioethics, University of Pennsylvania): Thanks for having me.
GROSS: So let's start with health insurance. A lot of people have lost their jobs this year, and most of those people lost their health insurance, too, because their health insurance was tied to their jobs. Obviously, that's really terrible for the individuals who've lost their health insurance. But it's pretty bad for us as a culture, too. What are some of the kind of larger problems that individuals losing their health insurance in this recession are creating for us as a society.
Mr. CAPLAN: They really do create big problems for all of us. It's not the case that if someone's laid off from one of the automobile companies or loses their job at a media organization that that's just sad, but it's a matter of indifference for me and my health insurance. For one thing, those people still need health care. So, they're still going to have babies. They're still going to get sick. They're still going to get in accidents. That means crowded emergency rooms. You know, there's no right to health care currently in the United States.
There is, however, a right to emergency health care. So you can go to an E.R. still and their duty or obligation by law is to stabilize you. Well, that's where a lot of people go who lose their health insurance. They wind up sitting in the E.R. That means it's crowded. That means a lot of that care is going to get paid for by charity or bad debt or state funds, as we know the states are not doing well fiscally these days. They're all - California, Pennsylvania, they're all running billions and billions of dollars of deficit that builds and adds on to that deficit.
When these people lose their health insurance, their children lose their health insurance. You don't go to the dentist, you put off the eye exam. It can affect everything from school performance all the way out to - is a child with a mental illness going to do harm to themselves or others because they can't get any type of care. When people lose their jobs, there's an odd impact - a very strange one. It's almost, something we don't think about, but the people in the ward force are relatively healthy. When they're losing their insurance, they're winding up leaving behind, if you will, a lot of people with big medical needs, but they're not in there putting their money into the system anymore. So the price of what goes on all of a sudden is raised because you're taking out, in a sense, the healthiest folks and now, who's out there who has needs? Medicaid, Medicare, but there's no one to bootstrap or cost shift to because the private insurance pool is shrinking because they're losing their jobs. So it's big.
GROSS: So what message do you think that the recession is sending about employer-sponsored health care?
Mr. CAPLAN: I think the message is pretty clear. Employer-sponsored health care doesn't make any sense. It never has made any sense. Getting your health insurance through your job is a system that is a historical accident of the United States. No else does it that way. If we went to Germany or Taiwan or England, they all have different health-care systems but none of them say, if you work, then you get health care as a benefit, if you will, of being a worker. Historically, health insurance got tied to jobs because unions were looking for ways to attract members. You know, back in the sort of beginning of the 20th century, you had all these different ethnic groups, people didn't get along, the unions weren't sure they could organize and grow so they offered health insurance as a perk. That's how it got connected up initially to work.
The AMA, early 20th century, the American Medical Association didn't like worker-based health insurance. They wanted universal health-care insurance. They were sort of on the left of this issue. But it all changed because of the linkage initially through unions and then it became a kind of condition in our society that you got health insurance because you earned it. You worked for it. To me, morally, it doesn't make sense to say you have to earn your health insurance. If you're sick, you're going to need health insurance. And either we're going to leave you out on the street or we're going to do something about it. So this notion of deserving this isn't, I think, correct to connect to health insurance. And then, literally, just attaching it to your employment, that means that Ford Motor and united widget and bananas of America all have to hire people to sort out your health insurance. What do they know about it? Or why should be presume that they're any good at it? It's a hugely expensive overhead cost for business. It's not something that businesses in industries outside of health care having any particular expertise at, why do it?
GROSS: So, President-elect Obama's going to be coming into the White House at a time when so many people have lost their jobs and health insurance, too. Is the health care plan that he proposed going to deal with that aspect of health care, the fact that so many people are unemployed now?
Mr. CAPLAN: Well, he's trying to make it possible for smaller businesses to purchase health care more cheaply. He will try to make it possible for people to join up health plans like the one that the Federal government runs for federal employees, who wants to, in a sense, open eligibility to that plan. He isn't taking the most radical option, which is to disconnect health insurance from employment. That isn't proposed. He still got it pretty tightly tied to businesses and trying to make it affordable. He also isn't taking a step that I think some people feared, which is to nationalize health care. We're not going to see single payer, meaning the government setting the rates and kind of handling the paperwork. That isn't part of his system either. It's opening the door to the federal system to more people and trying to encourage, through financial support, small business possibilities to pay for health insurance. So I think it'll help. Probably not going to get us to 100 percent universal coverage, though.
GROSS: So, under Obama's plan, what would it take to sign up with this federal health insurance plan?
Mr. CAPLAN: Basically, you'd come along and say, I picked this federal health insurance plan over the one my employer's offering because I think it's cheaper for me to go over there and you're be allowed to do it. Or you might be in a situation where you just lost your job and said, I had no place to go but out of my own pocket. I'm going to spend $4,000 or $6,000 and try to get to the federal plan. Now, clearly, people who were unemployed are going to need some help, tax subsidy or some kind of assistance to pay for some of these costs, but I think the idea is they'll make it free but make it affordable by subsidy for those who are unemployed and, I should add, underemployed.
The other big group of us Americans who wonder around the health care system or the 22-year-olds flipping burgers at McDonald's or the person who's an aspiring actress on Broadway. None of those people have health insurance, no. Either parents know this very well. They come off your health plan at the end of college and all of a sudden we get this big (unintelligible) of some people either working part time or jobs that don't offer health care or they just don't worry about it because they're self-employed or students but too old to qualify for benefits. So that's millions and millions of Americans there, too who he'd try to pull in through this Federal option.
GROSS: Is the federal option any cheaper than just going out and buying health insurance on your own?
Mr. CAPLAN: It would be, because - for a couple reasons. The pool of people is big, so I think there are currently 10 million people in the federal plans, so that gives you a lot of purchasing power. I think the federal government is willing to negotiate prices as a group a little bit more than some of the private insurance companies do, so that should drive cost down. It is a system that gets a little bit better drug prices because it bargains and lowers the cost there. And I think the federal plan tries to control cost a little bit by directing you toward doctors and hospitals and clinics that they'd prefer, and then charging you more for choice. So, in the sense, you're paying more than you might be if you bought a full-bore private plan that, said you could see anybody you wanted anytime. But they're really - you're going to pay through the nose for that.
GROSS: If you're just joining us, my guest is Art Caplan. He's the director of the Center for Bioethics at the University of Pennsylvania. And we're talking about some of the health issues that will be facing Barack Obama when he gets into the White House in January. Let's take a short break here and then we'll talk some more. This is Fresh Air.
GROSS: My guest is Art Caplan, he's a professor of Bioethics at the University of Pennsylvania where he also directs the Center for Bioethics. We're talking about some of the issues, the health-related issues, that will be facing Barack Obama when he becomes President Obama. If Obama's health-care plan does go through, and he makes some or most of the changes he wants to make, are there new funding issues that we're going to face about what interventions get funded and which ones are considered too high-priced or to unproven to be compensated for?
Mr. CAPLAN: Well, most politicians, and I don't think Obama is an exception to this, don't really want to face up to the fact that medicineâ¦
GROSS: Oh, I see the word rationing coming.
(Soundbite of laughter)
Mr. CAPLAN: You do.
GROSS: Word everybody hates.
Mr. CAPLAN: It's lurkingâ¦
Mr. CAPLAN: Over the horizon. But, you know, you have to go and make a confrontation with this reality at some point. And I think the day is here. Medicine continues to create new things. There are wondrous things, better drugs, better transplants, better medical devices. The cost is significant. And we have an aging society. They use more health care, and then age - we use it more in aging society. I think at some point in time, we're going to have to come to term, some time in the next eight years if he goes into a second term, with rationing. We're going to have to finally bite the bullet and say, are there any limits? Are we going to limit by age? Are we going to limit by some notion of effectiveness, if it doesn't get to a certain level, then that's it? We're not paying. Are we going to say the rich can get things that the poor can't get, not that that doesn't happen to some extent now but are we going to sort of admit to it and almost make policy? I don't see any way out of a confrontation with rationing under - in an Obama administration, if we're really going to contain cost.
GROSS: Where do you think he should start?
Mr. CAPLAN: Drug prices are out of control. It makes no sense at all. To Americans, we're spending double what the rest of the world does. The rest of the world engages in negotiations with the drug companies and gets the best price. France, Singapore, Enland, wherever. The government sits down with the drug companies and says, this is what we're going to pay for. The drug company says that's not enough. This is what you'll get. And they bargain to an end. There are friends and kin that do much the same.
We have prices set by what the free market will bear, depending on who the payer is and depending on where you live. We all know about this because that's why people are running up to Canada to try and buy drug or running down to Mexico or Costa Rica to try and get drugs, at least Americans are.
The drug companies will tell you flat out that we know these rates are unfair. But if we didn't have the Americans subsidizing these costs, then medical research would suffer. Well, OK, but why should the Americans bear the cost of medical research for the rest of the planet? It makes no sense at all. You've got to get drug prices under control. This is a little inside baseball comment, but even to have Medicare part D, the new benefit for elderly to - for drug coverage, the thing that people worry about with the donut hole, Congress explicitly forbid Medicare from negotiating the drug prices. Well, somewhere in that Obama administration, you've got to say, we're flipping that. We are going to negotiate. The drugs that you get in the V.A. or Department of Defense, half the price of what you'd buy at your drug store, it's all negotiation of price.
GROSS: You mean it's already that way?
Mr. CAPLAN: It's already that way. They're getting great rates in the government. And if you will, we've got to extend that through the systems. So I think the fight right over drugs, pricing, bargaining, maybe sometimes saying we're not going to get the newest thing. Maybe we're going to get the generic first before we get to the prescription. But you can't have these exploding drug costs. And they're getting worse every year.
GROSS: Now, Tom Dashell is Obama's choice for a new office, the White House Office of Health Reform to direct that, and also he's Obama nominee for Secretary of Health and Human Services. What's Tom Dashell's track record in terms of medical issues?
Mr. CAPLAN: He's been very, very thoughtful on medical issues. The first thing that needs to be said is, and I think it's important to keep this in mind, you know, we failed to get health reform in America, meaning we haven't got universal coverage or universal access, I guess, since Roosevelt began talking about this. I mean it's been talked about for a long, long time.
Dashell is aware that the key breakthrough on this actually isn't economists, and it isn't doctors, its ethics. That is to say, you have to make a more commitment to say there is the right to health care. Then we can to start to argue about, well, how do we implement that and who should pay for it and what's the best system and so on. If you don't get consensus on that point, and if you look at the book he had out, the name of which is escaping me, but that he has a book out on health care, you see that he understands very well that you have to talk right to health care to drive forward health reform to get universal access. Obama does too.
GROSS: Let me just back up and say you're a bioethicist, so you probably heartily concur with that premise, that the health care is an ethical issue.
Mr. CAPLAN: Health care is an ethical issue. I think you have to drive the ethics point home, get Americans to agree, and then conservatives and liberals, Republicans and Democrats, their feet can be held to the fire about how to implement it. If you don't agree that it's a right, then I think there's a lot of room to wiggle away and say, you know, I'm sorry that 40 million people don't have it. But they don't have a right to it.
I'm not sure my argument is the same as Dashell's. Dashell seems to think it's a right because it's something that, in a sense, Americans deserve. I might argue that it's a part of our commitment to equal opportunity. You can't compete; you can't be in a capital society if you don't have health. And to me, especially for children, mentally ill people who can't navigate the system, they have no opportunity ability unless you give them health care. So it's - to me, its goes back to an opportunity basis more than anything else about the right.
But be that as it may, Dashell get that he's committed to implementing that vision. And then I think he also understands it isn't prudent to set out and drastically change the trillions of dollar health-care system that we have in a radical way. You've got to move it slowly. That was probably the lesson of Clinton. He paid attention to that Clinton health-care reform. And you wind up saying, you know, they're sailing an aircraft carrier. It takes a long time to steer it in the direction that you want to go. So I think you're going to see some of the - let's reform the system we have. Let's try to build upon access through employment to extend it out to the small businesses. Modifying the system to include most of us is what really fuels the Dashell vision.
GROSS: One of the things Dashell said he wants to initiate is a federal health board that would be an independent entity, kind of like the Federal Reserve is. What would this board do?
Mr. CAPLAN: I am very, very enthusiastic about this notion of creating this board. I think it's about four decades overdue. If you think about what the FDA does now relative to health care, the FDA tries to regulate safety and it tries to establish efficacy. But what the FDA does not do and cannot do by law is compare treatment A to treatment B.
So, just to make this concrete: if there are 10 sleeping medicines out on the market and I come up with number 11, and my medicine isn't better than the other 10 but it does have some effectiveness, I can get it approved and try to sell it. In other words, I can sell an inferior product. If I get my advertising right, maybe I can fool you into buying it. This board would come out and say, look, we have to do comparative evaluation of what's out there. It needs to be independent; we can't rely on the drug company or the device manufacturer or some hospital to tell us what they do well. We've got to start the process of waiting and comparing and then using that to guide coverage.
I'm off for that. It would give us data for the first time that would be useful to see what's better than something else. And it would put us on a position to start to say, you know, drug company, device company, whoever you are as a health-care provider, what we want to see is not just things that work, but we want to make sure they work better than what we already have, and that's the guarantee we don't have right now on this system.
GROSS: Is there anything else this board would do?
Mr. CAPLAN: Board would probably try to understand prices. And that's a little bit of that Federal Reserve notions. I don't know how many listeners have had the joy of pulling out their bill from a hospital. So you look and see things that are mysterious, such as aspirin, $37. You think to yourself, gee, I know they're expensive, but if I go down to the drugstore I think I can beat that price. Why that much.
Well, pricing at the hospital and is all done by cost-shifting. They're picking up care for all those poor people in the emergency room, the uninsured. So prices are being tuned up to try and capture what the hospital needs to recover in the way of revenue. It is a murky abyss. We don't know how we get to these prices. They don't make any sense. They're set not by true cost but to recover revenue. This board, let us fervently pray, will take a look at pricing for the first time and say, how did you established this price for this particular thing, and is it reasonable?
GROSS: One of the things that Obama seems to be making a priority in terms of health care is computerizing medical records. And he sees this as, in the long run, a way of saving a lot of money and also just making doctors work easier. What will computerizing medical records consist of and what would it accomplish?
Mr. CAPLAN: Well, I think people hear about computerized medical records and they think, are they going to appearing over my shoulder? Will I have any privacy? Right now, too much of our health-care system depends on information systems that Charles Dickens would've been comfortable with. I mean the, you know, it's paper charts and guy - people writing in bad penmanship, give Terry X amount of Y. There are people dying in America because of penmanship errors. I mean it's beyond me that we haven't made that system electronic. So to make it concrete, your doctor should have a little Blackberry or a little handheld computer device that should have your medical information on it. It should be printed, so that everybody can see it. And it shouldn't matter when the nightshift comes on or the weekend shift comes on, they get the same information.
Also it should matter if we move you from the nursing home to the hospital. Got the records, shouldn't matter if we move you from the ER into the hospital and so on. The system we have now, if I got in the hospital, and I say, I want to see the chart on X, it may be there, it may not be there. Someone might have taken it out. And the other advantage of the electronic health care system is it will standardize data. So that we'll have it in the same format, that should help reduce billing cost, it should help do audits on the quality of the care, because it's all in the same way.
GROSS: Art Caplan will be back in the second half of the show. He directs the Center for Bioethics at the University of Pennsylvania where he also chairs the Department of Medical Ethics. I'm Terry Gross, and this is Fresh Air.
GROSS: This is Fresh Air. I'm Terry Gross. We're talking about some of the tough health-care-related decisions facing President-elect Barack Obama. My guest is Art Caplan, director of the Center for Bioethics and chair of the Department of Medical Ethics at the University of Pennsylvania. Last month, Discover magazine named Caplan one of the 10 most influential people in science. Now, let's take a look at the public health system. You've described it in colorful terms as a wheezing, uncoordinated, underfunded eye sore that needs to be rebuil- to face the challenges the 21st-century living pose to health, ranging from asthma to diabetes to the flu.
Mr. CAPLAN: Other than that, it's in pretty good shape.
GROSS: Yeah. Really.
(Soundbite of laughter)
GROSS: What's wrong with the public health system?
Mr. CAPLAN: You know, it's been allowed to collapse. States, basically, counties support it. It's what we talk about when we think about who is it that's going to keep an eye out for pandemic flu, who's going to make sure that our water's clean, who's going to make sure that if we have an outbreak of salmonella in our food, who's going to jump on this is usually the Public Health Department. Underfunded, completely low priority. Public health deals oftentimes with prevention. Politicians deal with crisis.
Mr. CAPLAN: Public health loses that battle every single time. Public health has traditionally taken a back seat in prestige to therapy. It's great to do a heart transplant. It might be nice if we could put in an exercise program or bring back recess or do the things that public health likes to promote in terms of healthy lifestyle. So we've shut a lot of the clinics. We have fired a lot of the people that work in there, and this system really has to be rebuilt. It has to be rebuilt for a couple of reasons. Diseases in the 21st century don't know state boundaries, they don't know national boundaries because of air travel and train travel. What's going on in Africa can be in Europe tomorrow very quickly. You need to have people monitoring and watching to see where these disease threats come from. It's not going to do us much good to have better vaccines and better medicines if we don't know how to deploy them in a reasonable way in response to an emergency. It just goes on and on in terms of setting out planning and preparation to deal with big health challenges.
GROSS: Has the public health system been affected by the Bush administration, has it been either bolstered or weakened in the eight years of Bush?
Mr. CAPLAN: I think the eight years of Bush did about as much as could be done to basically annihilate the public health system. Never - I don't remember anybody in the Federal government talking much about it. I don't remember any budgeting going toward it. I remember budgeting moving away, and when you return some of the control to the states, which tended to be what the Bush administration did to the poorer states, basically said, we can't afford this. So we're just going to cut it out.
GROSS: You didn't mention terrorism, but that can be a public health issue, too.
Mr. CAPLAN: Terrorism absolutely is a public health issue. In fact, you know, Terry, there's a funny way to turn around something about rights and entitlements in universal health care. One of the things I've been thinking about as a moral argument is - you know, we built the Veterans Administration System. We have a health care system. Abraham Lincoln started it after the Civil War. So we have to do what we can for those who fought and sacrificed for the nation. And since then, we've had a notion that veterans are entitled, if they get injured in a war or war-related activities, then we should care for them. The age of terrorism we're all combatants. Anybody could be subject to an attack or some terroristic event in Los Angeles or Minneapolis or Philadelphia.
GROSS: You mentioned the history of the Veterans Administration and medicine for vets, a system started by Lincoln after the Civil War. Many veterans have been complaining about the quality of care at the V.A. hospitals in our country.
Mr. CAPLAN: Yes.
GROSS: And I guess, I'm wondering from what you know, what needs to be fixed?
Mr. CAPLAN: Some of what the veterans complain about is the lack of benefits coverage, which isn't health care access, it's getting their disability payments. There's a huge backlog there and they're upset about that. Some veterans are also upset that, if their injuries and problems are not directly related to something they can prove happened in combat, they're not covered. So there is this eligibility battle. You may remember coming out of the first Gulf conflict, when we had the big debates about Gulf War Syndrome, part of the fight there was, prove to me that whatever your problems are is linked up to your service. You know, the Lincoln vision was you get covered if you served, and we're not going to do this so much by - is that bad arm or mental health problem linked up to service-related, combat-related activity or did it just kind of happen during the time you were in the service. I think we should lower some of these barriers and simply say, if you serve, you get coverage. Now that's costly. It's going to raise the cost, but I think it's more in sync with what veterans expect.
The other problem, and one that I am a little less sympathetic to, is some veterans complain and say, you know I came back, I have traumatic brain injury. I suffered some explosion, exposure caused terrible damage. I came back, I have PTSD. I now live in rural Alabama, and I can't get traumatic brain injury help. The reason I'm not quite as sympathetic to that is you're not going to build those specialized facilities in every single county in the United States. If you want some of that care, you may have to decide you're going to move to a more centralized location where those facilities are. You can't put them on every street corner. It's too expensive, it's not efficient. It isn't even good quality necessarily.
GROSS: Now, President Bush put Federal funding restrictions on stem cell - embryonic stem cell research.
Mr. CAPLAN: Yes.
GROSS: Barack Obama has said that he will reverse those funding restrictions. What do you expect to happen with embryonic stem cell research under President Obama?
Mr. CAPLAN: Well, there's a little inside baseball here, too, that I think people haven't been aware of because most people assume Bush came in and issued some executive order saying, don't do this and Obama will come in and reverse whatever Bush ordered. I'm not sure Bush actually ever issued an executive order about anything in stem cells. He just made it known that he was opposed, and the NIH and other places said, all right. Then if you have that opposition, you never ordered us not to do it, but we're not going to fund it unless it came from - unless the cells came from what he called the approved lines, stem cell lines that existed before he made his opposition known.
Obama, I think, will make it clear that he isn't opposed. And I think the NIH will set aside some money to permit embryonic stem cell research to go forward. Some states are already doing that: California, Wisconsin, Maryland. They're already saying, we're going fund it so, in a sense, it's just going to expand the possibility of funding to scientist in every state. They already have it in some states.
The tricky part is, there's Congressional legislation. Something called the Dicky Amendment, that does not allow for research on an embryo. And I'm not sure that people realize that that may need to be revisited if we're going to talk about embryonic stem cell research. It basically says, you can't experiment on embryos. The idea was, don't do things to embryos that might somehow come to fruition as people, or don't just take them out and grow them and do strange experiments on them. In stem cell research, no one's growing anything. You're going to take the embryo, probably one from a fertility clinic that was left behind, and destroy it to get the stem cell out. But this notion of not experimenting on the embryo is in Congress.
GROSS: That's already passed?
Mr. CAPLAN: It's already passed, and I think it's going to have to be looked at in a serious way if we're going to see stem cell research really expand because some opponents are likely to invoke it and say that stem cell research violates that Congressional mandate. It was done for a different reason, but opponents know that they could, if you will slide it over toward stem cell research. So I think that's where the battle is going to be. I think Obama will say, here's the money, and then opponents are going to say, oh yeah? What about this Congressional law or restriction. How you're going to get around that?
GROSS: When did that pass Congress?
Mr. CAPLAN: That's been around, believe it or not, it's at least five years old.
GROSS: I think it's fair to say not many people know about it.
Mr. CAPLAN: Yeah. So it's out there and there - I should add, there are also states that have passed laws, and some have been in the books for a long time restricting research on embryos. Pennsylvania's one, Louisiana's one, South Dakota's one. Even if Obama said tomorrow, here's money, it's not clear in those states that critics or opponents wouldn't say, you know you can't do that kind of research here even though there's no opposition from the president, because there's restrictions on what you can do to an embryo.
GROSS: We've talked about a bunch of issues that President-elect Obama faces. Name a couple of others that you think are important, that haven't been getting a lot of attention.
Mr. CAPLAN: You know, lost in the sort of amazement of electing an African-American president and the cultural impact of that on America. some other things did happen in the last election that I think are usually significant. Washington State joined Oregon in legalizing physician-assisted suicide and within a few days, the state of Montana had a court opinion doing the same thing. A judge said, this is going to be legal. Now, I'm trying to make a list in my head of political issues that no politician would ever go near - not just a third wheel but kind of a mountainous third wheel that would be avoided at all cost. Physician-assistance suicide is probably there, but it is starting to get some traction in the United States.
They experience in the state of Oregon has not led to abuse of physician-assisted suicide. In fact, it's relatively underused. People who are terminally ill asked for these medicines, but turned out not to use them. I think 50 people a year have ended their lives, which is tiny, in the state, but most people find it assuring that they could have the pills to do it but they don't do it. Are we going to see physician-assisted suicide in the next couple of years on more state ballots, are we going to see it moving forward, if you will. And I think the answer to that is yes.
Initially, I was opposed to legalization. I thought if you have a country that doesn't have health insurance for all, how are you going to start off by saying, you have physician-assisted suicide for all but sorry about that health care. Well, we're moving toward trying to do something about a universal health care insurance, if not access, than at least getting insurance. That cements the environment, I think, for a little more trust within the system that they're not going to send me off to oblivion because I can't pay. So I suspect we're going to see more states do this. I don't think it'll be a federal issue.
It'll be interesting to see if people in the administration â Dashell, Obama - have anything to say about this. Another issue is the battle over conscience. So a lot of health-care workers who have issues with birth control or day-after pills and so forth, they wanted the right to opt out of the system and not have to be involved. And the Bush administration has been doing what it can to support them. I suspect an Obama administration is going to not oppose conscience but at least no do things that make is easier for pharmacists or a doctor to say, I'm not giving you those pills. So I think we'll see that issue toned down if you will.
GROSS: If you're just joining us, my guest is Art Caplan, and he's the director of the Center for Bioethics at the University of Pennsylvania, where he's also a professor. We're talking about some of the medical ethics issues facing President-elect Obama. Let's take a short break here, and then we'll talk
GROSS: My guest is Art Caplan. He directs the Center for Bioethics at the University of Pennsylvania, where he's also a professor. We've been talking about health-care issues facing the in coming Obama administration and some of the tough choices they're going to have to make and that we're going to make as a nation. Now, there's something in the news right now that poses all kinds of interesting bioethical questions, and I'm talking about the face transplantation. Just sum up for us what the procedure was and why it was done.
Mr. CAPLAN: Well, every once in a while, you get reminded why it's interesting, fun and fascinating to do bioethics and this face transplant is right there. People get, unfortunately, sometimes terribly burned and their face gets disfigured. Sometimes they are in traumatic accidents, cut, bruised, injured, face gets damaged. Sadly, people in war, both military and civilians - explosive devices go off and do terrible damage to their face. There are even a few people, sadly, who are born with congenital malformations, birth effects of their face that are just horrendous.
So we're talking here about people with facial disfigurement that is so bad, they may not want to go out. They would only go out wearing a mask. They're almost cut off from society because of the damage with their faces endured. Scientists and doctors have basically gotten to the point now where, learning from heart transplant and liver transplant, they think they can marry the use of drugs to keep organs from being rejected and the surgical techniques that they've learned to rewire muscles and nerves to allow you to transplant a face. It has now happened for the first time that people are transplanting a face in the United States. We had a partial face transplant take place in France, this face transplant now is a nearly full face. It came from a cadaver. So you have someone who is newly dead, just as you would for a heart or liver transplant. You keep the person on life support, they are pronounced dead, when their brain stops functioning you then remove the face, literally, and put it on the face of the recipient who also has had their skin muscle tissue removed. It's almost unknown yet whether you should take some of the facial bones and move them for better outcome or...
GROSS: I've heard about that, yeah.
Mr. CAPLAN: Just the muscles and the tissues, and we don't know the answer to that yet. It looks as if if you move the bone, you're going to get a closer match to the face that the donor had. If you just take the tissues and the muscles and the material, it looks like it's not going to look quite the same when it gets on the new body. So, we'll have to see how that sorts out.
GROSS: What are some of the ethical issues surrounding face transplants, now that there are medical possibility?
Mr. CAPLAN: You know, I started off in bioethics with transplants. it's what got me interested initially. And I have to say the face transplant has oodles of tough fascinating questions that each one of us, in some ways, has a stake in. For example, I said that the face transplant came from a cadaver. Well, many of us assigned a donor card, a driver's licensing saying, yeah, I would be an organ donor. You can use my liver or my heart. I don't think many of us thought you would use my face. And the face is not the same as the heart or the liver. To put it bluntly, we don't identify one another, we don't have a psychological or emotional investment in our pancreas in the way that we do the face.
GROSS: We think of the face is our identity.
Mr. CAPLAN: The face is us. The only organ I can think of that's more intimately tied to our identity is the brain, second place: the face. So, who you are - you fall in love with people because of the appearance of their face, you establish who they are because of their face - it's crucial in our culture to, in a sense, have a face, have a face that is presentable and so forth. And it's certainly the part of the body that gets looked at the most day after day after day. So, there's certainly going to be some people out there who say, I don't think so, I don't want my face appearing on anybody else. There are going to be people who might even say, if that's a risk of carrying a donor card, then I'm not sure I'm going to do that. So we need to have a little public discussion very quickly about, do you require special permission if you're going to use something like a face? I give my consent to liver and kidney and heart, but there's an extra box here I'm going to consent explicitly in the face, and I would favor that. But I think we need to decide whether we want to have that discussion as a matter of public policy. This would happen at the state level, not at the national level.
GROSS: What are other ethical issues that a face transplant poses?
Mr. CAPLAN: When you transplant a face, there is always a danger that it could be rejected. We hear about this once in a while, someone gets a liver transplant or a heart transplant and the body rejects it. It's terrible, it's awful, it often can lead to having to go back on dialysis, in the case of a rejected kidney, in the case of a rejected heart, it can lead to death. Having a face reject is a whole other dimension of suffering. You can't breath, you can't eat, you're going to look bizarre, at best.
How are we going to manage failure? And I think that's one of the toughest ethical problems around face transplants. Would you say to the person who has and is going through rejection that's not working, the face is literally sloughing off, you don't have to accept any treatments, you can't simply allow yourself to die? Would you go further and say, you know, that is awful, so unbearable to even think about, we're going to give you something that accelerates your death? Those are some pretty tough questions but I think they have to get answered before you could really let somebody undertake this.
I hope they got answered in the face transplant that's underway, if you will, now. Major issue for face transplantation beyond managing a failure, what's the psychological and emotional impact on others who are intimately related to the people involved in the transplant? So, do the family and friends of the donor, do they accept that this person has this face and they're able to deal with that and are happy about it? Do they feel some need to intrude into the recipient's life because they say, you know, you remind me of my sister, or that still appears to be my dad?
And that's not literally true but, I think, emotionally and psychologically, people often are grasping for ways to redeem a death and maybe even say, you know, you're still here, you're still going on in another person's body. And I think the recipient may be saying, I didn't sign up for a new family, I just wanted a new face. I didn't want all of you around. I do think you may need to provide counseling, support, help over time to both the donor family and the recipient family as they try to adjust to this brave new world of transplant.
GROSS: Art Caplan, thank you so much for talking with us.
Mr. CAPLAN: My pleasure.
GROSS: Art Caplan directs the Center for Bioethics at the University of Pennsylvania, where he also chairs the Department of Medical Ethics. Coming up, the best books of 2008 as chosen by our book critic, Maureen Corrigan. This is Fresh Air.
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Maureen Corrigan's Best Books Of 2008
TERRY GROSS, host:
Our book critic Maureen Corrigan has made her list of the best book she's read in 2008.
MAUREEN CORRIGAN: If I had to pick the Michael Phelps of fiction for this year, the gold would go to Joseph O'Neill's novel, "Netherland," a story about post-9/11 New York City as viewed through the scrim of F. Scott Fitzgerald's masterpiece, "The Great Gatsby." Gatsby here is reincarnated in a Trinidadian cricket player, but O'Neill's novel is so much more than just an exercise in imitative gestures. Like Fitzgerald, O'Neill is a connoisseur of the lost, dusty places in New York and also a poet of retrospection, a mood that suits the city directly after 9/11.
Remember how Nick Carraway at the end of "The Great Gatsby," talks about when the "green breast" of the New World, Manhattan, first appeared before Dutch sailors' eyes, it was the last time in history when man beheld an object commensurate with his capacity to wonder. It's all over, Carraway is saying in that ending. The age of discovery, the roaring '20s promise of New York City, it's finished, kaput. We live in a permanent state of aftermath, which is where O'Neill's gorgeous, mournful novel begins.
Two short story collections also top my list. Jhumpa Lahiri's "Unaccustomed Earth" zeros in on characters whose natural tendency toward isolation is intensified by the immigrant experience, most are first or second-generation Indian Americans. As a writer, Lahiri is made of exquisitely stern stuff. And even though, as a reader, you quickly catch on to the fact that her characters won't be granted reprieve from their loneliness, you stick with them for the great pleasure of their solitary company.
The five electrifying stories in Uwem Akpan's debut collection, "Say You're One of Them," are narrated through the distinct voices of children in Africa who've seen too much. They've lost family members to prostitution, AIDS, slavery and genocide. Akpan's brilliance resides in the bewildered but resolutely chipper voices of these rough children, never overly endearing nor innocent.
Let's lighten the tone here a bit. Muriel Barbery's wry and erudite novel, "The Elegance of the Hedgehog," won the 2007 French Booksellers Prize. It was translated into English and published in paperback in this country this year. Barbery's tale of a middle-aged French concierge named Rene, who hides her hard-won education in the humanities from her building's wealthy tenants, astutely comments on class, presumption and power. As Rene says, "As always, I am saved by the inability of living creatures to believe anything that might cause the walls of their little mental assumptions to crumble."
Philip Roth's, "Indignation," may not be what one would call a comic novel, given that it's set in 1951 and that our narrator, a 19-year-old Jewish transplant from Newark, finds himself shipwrecked on the antiseptic, anti-Semitic campus of a Midwestern college. But Roth's vision is always alert to the absurd. "Indignation" is Roth's bow to Shakespeare's, "Twelfth Night," a play whose brutally humorous tone is explicitly carried forward throughout this tale.
Politics and history dominated nonfiction this election year, so I want to give a quick nod here to literary nonfiction. Elizabeth McCracken's memoir called "An Exact Replica of a Figment of My Imagination," is an intense and tough-minded meditation on loss, in this case, the loss of her first child who was stillborn. McCracken captures the confusion of being thrust into a nightmare that hasn't been quite categorized.
Brenda Wineapple's superb biography of the friendship between Emily Dickinson and her editor, Thomas Wentworth Higginson, complicates our understanding of the Belle of Amherst and gives her more juice.
Finally, The Library of America did readers a great service this year by reprinting A.J. Liebling's "World War II Writings." As this collection, which runs over a thousand pages, demonstrates, when the journalism gods made Liebling, they pretty much broke the mold. His style was forged by a classical education, and the Great Depression, and a vigorous print culture and fairy dust. And to any skeptics out there who think I'm being unduly sentimental, allow me to quote Liebling from one of the essays here in which here in which he's defending his own sentimental impulses. "Cynism," wrote Liebling, "is often the shamefaced product of inexperience." Not bad words to hold in our hearts as we look toward this coming year.
GROSS: Maureen Corrigan teaches literature at Georgetown University. You can read excerpts from the books on Maureen's year-end list on our website, freshair.npr.org, where you'll also find her list of the top five mystery novels of 2008. And, of course, you can also download podcast of our show on our website.
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