The biomedical revolution has given doctors many new tools tools like the anime one respirator and exotic machine that keeps the heart beating and patient breathing, even though the brain has stopped sending signals consider the revolutions taking place in genetic engineering genetic counseling test tube babies and psycho-surgery. Those are all new tools that medicine and patients have to cope with and we're just beginning to realize the current and future ethical legal and social implications of those medical tools.One need only mention the name Karen Ann Quinlan to dramatize the fact that medical technology is fast outstripping our ability to deal with it. There exists in this country or group of people who are trying to deal with the science fiction like advances being made in medical science. They're called bioethicists one such person is Bruce Hilton a Methodist Minister Hilton has worked with the civil rights movement and as a journalist, and he's now founder and director of the national Center for bioethics in Berkeley, California. He spoke recently at North Dakota State University. a couple came to a obstetrician in Boston and the woman said Doctor, you know that I'm over 40. I've become pregnant. I know that I have a greater risk of burying a retarded child a child with Down Syndrome. Then I would have if I were younger and I understand there's a test for this so I can find out whether in fact the fetus that I'm carrying is a Down syndrome fetus and the doctor said yes, as a matter of fact, there is a fairly new test and we can find it out. He perform the test throwing out some of the amniotic fluid around the fetus and call them back in three weeks because that's how long it takes to culture the cells. And call them into his office and he said that a couple I'm glad to tell you that this is not a Down syndrome or Mongoloid child that you're going to have. And the woman said never mind that What's the sex of the fetus? And he said well, it's obviously, you know enough about the test to know that that's a side effect to find out what the sex is its female. She said I want a therapeutic abortion. Because we have three girls at home. We weren't really worried about Down syndrome. We just decided that if this was a boy would have it but that if it was a girl we wouldn't. a bioethics issue that is an issue created by an advancement in biology. But an issue with that you can settle out of biology an issue that requires laws and requires ethical decisions, unhappy choices that we didn't have to make before molecular biology is given us. this test that we can tell in the womb early enough for a safe abortion tell us whether there's a birth defect there and yet already the ethical issues that biology can help us decide at all. I want to talk tonight about that kind of case about how the biological Revolution kind of quietly like a quiet atom bomb built piece-by-piece while we weren't looking. Has given us not only great Boons and great advances in health. But is requiring you and me as lay persons to make decisions. That are ethical decisions that are philosophical decisions. What is happening it seems to me is that we are being given growing control over birth over life and over death. And we are anywhere near ready to exercise that control. So let's talk about it under those three headings birth life and death. growing control over birth you're going may I went to England to Cambridge to talk with a man who is doing test tube fertilization of human eggs? Now you started this with the idea of just finding out what happens in that miraculous moment when the sperm penetrates the membrane of the female that the ovum and there is fertilization conception different kind of Life takes place. But as he was doing these experiments over the years and learning the proper medium the proper temperature and timing and so on and obstetrician name Steptoe. And said Edwards. Do you know that there are 10,000 women in England alone who can't have babies because their tubes are blocked. He said let's do an end run. So here's what they were doing when I was there. They would take a large gauge needle. Prepare the woman with one of the fertility drugs so that the eggs were ready. Go right in through the abdomen with the needle and draw out of the ovaries three or four of these eggs over. Fertilize them with the husband's sperm and let them start to divide Andre divide until they got to that stage the blastocyst stage at which normally they would begin to implants in the wall of the womb. but this is taking place in a test tube, then they would take one of those little pinhead-sized embryos those potential human beings 64 cells put it on the end of a plastic cannula inserted up the birth canal end of the woman hopes that it would implant and then develop and grow determine the way that a normal embryo would That's going around the tubes that were blocked. Well when I was there, they had failed with 27 British subjects, but they were having 50% success with chimps and with rabbits and they were convinced that it was just a matter of months until they solve that question. I just let's take that for a minute. And the reason I went to England was to talk with RJ Edwards about the ethical issues just to show you how we bioethicists. Can find problems in one procedure? Let me mention some of the dilemmas that come out of that specific one. first of all there the dilemmas that have to do with our rights to have children. I think we've assumed that this is a basic inherent right in the in the atmosphere in the universe. Some people are saying do we have so much right to have children that it justifies going to this kind of end. Is not being able to have children a sickness and has to be cured by all kinds of medical means. Well, that's one question. Another kind of question has to do with the idea that many people believe that that conceptis of that fertilized egg is a human being the moment conception takes place many people believe that for theological or other reasons. If you believe that what happens when you take four of them. Insert one into a healthy mother and wash the other three down the drain. Are you committing murder? If you believe that's a human being what are you doing? When you take the pipette and move it around and a glass slide potentially may be creating damage. That won't show up for 5 years. If that's a human being where is the signed consent form for experimentation on human being? Ideally, you would get it from that person 18 years from now. Obviously that's impossible. So that's another set of questions the damage in the consent and so on. The set of questions that interests me most however is has to do with the misuse of this technology. I firmly believe that will be doing this in this country. That is successfully implementing the embryo. And having it come to term as a child in 9 months later. We'll be doing that within a year in this country. And when that happens, first of all, it will be used for people who can't have children for physical reasons, but it'll next be used. With the surrogate mother that is with somebody who's unrelated to the people who furnish the sperm and the Egg suppose that that my wife and I want a baby that's ours. Whatever that means. We have this strong impulse to have our own genetic child can adopt but that my wife is just physically unable to Bear the child to term. With this procedure will be able to with my sperm in my wife's egg. Have an embryo implanted in the wife's a of my sister in the womb of my sister-in-law. Who will bear the child? There's nothing in the rejection mechanism of the human body to stop that from happening so bad, but what if you know, I felt the baby move and I'm realizing that I'm going to love it so much that I'm not going to be able to give it up. And we say we'll wait a minute. That's our baby. And she says what do you mean you are baby? I'm burying the baby. And we say what we're going to get the law on you and she said show me the law. We're dealing here with realities not something off in the philosophy Department II retire and yet as a society either in the law or in the way that we make ethical decisions were not ready. For these things that I wear this right now, that's just one little example of one kind of biological development this speeding Full Speed Ahead and so driving down a country road with the lights are not good at knowing where it's going. Another example that is Father alone yet. A procedure I think we'll change our society more than test tube fertilization ever will. And that's call amniocentesis many of you know about it that's prenatal diagnosis of genetic disease. It comes together with a couple of other developments first of all, As of about four years ago, there's no way to tell whether you carry the single Gene for an inherited disease. Used to be no way to know. And you it didn't make you sick. There was no impact from that single-gene except that if you happen to marry somebody. And the Chance is like one in 900 or something like that. Unless you happen to marry somebody who had that same gene. Then one and every for pregnancies on the average, you would have a child with that inherited disease mentally retarded or crippled or whatever. The manifestation was if it would have a recessive disease. No way to know until the baby was born and then suddenly you were both carriers. Now. There is a test simple test that tells you if your a carrier. not only that if you know, you're both carriers and you got pregnant you can have this amniotic tap that I spoke about it the start that the couple in Boston got That is drying out a little of the fluid around the fetus which convened the fluid contains cells that slept off the skin of the fetus culture those cells and then I'm either chemically or physically. And you can detect about 75 inherited diseases including some of the most common and some of the most common birth defects. How that little development which came on the scene not more than 5 years ago. Which is now available in every Major Medical Center across the country is changing the nature of being a parent. Is changing the nature of raising children is changing our society. In the first place. It's laying a burden on your generation that thank God my never had to face and inescapable kind of question. Some of you in this room will face. The question is the best thing we can do. for our potential child It's The End its life Now that's one heavy question. The Polynesians used to take their defective children and throw them over the cliff in the Spartans used to put them out on the hill to die. But we think of ourselves as a society that doesn't do that and yet some of you will face the question at at about 17 weeks in pregnancy. You'll be told. Yes, your child will be born severely mentally retarded. Or will be born severely crippled or with lesch-nyhan syndrome where it eats its own flesh bites off its fingers and it slips and toes and so it won t Sachs disease where it begins to die after 6 months of normal life becomes blind and deaf and paralyzed and yet can Linger on for next year. All of these kinds of diseases. Somebody here will be told and we'll have to then way the question live or die you say there's no cure for genetic disease. So what's happened is that we science has given us this technology this test. And two choices neither one with which is happy to allow the child to be born or to stop the pregnancy. Not only that but it's it's tougher than that is if that weren't difficult enough. It may be easy enough to decide for a Tay-Sachs baby child will live for only six months of normal life and then begin to die wither away. And if you can get past the abortion question, which is the first ethical issue maybe you can decide in this case. It would be better. Would be morally right to end the pregnancy for a lot of people that would be acceptable. But what about the cystic fibrosis where it isn't six months of normal life, but where the life expectancy is up now around 18 years. and couples of your generation are going to have to say Shall we bring into the world this child with cystic fibrosis is the most common genetic disease among whites in this country. Shall we bring into the world a child? I probably won't get out of high school, but can live a relatively normal life till then. Or what about Huntington's disease for which there is not now a test, but looks as though there will be where you have 45 years of normal life. And then in the mid-forties begin to die in a particularly terrible way with mental deterioration and then physical deterioration wasting away over maybe 10 years. Would you decide knowing that your child had a 50/50 chance of developing Huntington's disease later? That's a decision that my generation didn't have to make because we didn't have that wonderful bun of amniocentesis prenatal diagnosis. And in addition to the individual decisions that you'll be making Society is going to be making some decisions whether we like it or not. Think about it. What's going to happen in your neighborhood now days. When a child with let's say Down syndrome what we used to call mongolism retardation some physical characteristics suppose such a child is born today in your neighborhood people sort of gather around and sympathy and support the family and feel for them. It's like a lightning strike through an act of God. But what's it going to be like 5 years from now when everybody knows that there is a test a prenatal test for Down syndrome and that older mother is it at least would know that it would be wise to have that? And human nature being what it is. I'm not advocating this. I hope you understand but human nature being what it is. People are going to be muttering. Why did they do this? Why did they have such a child when they could have stopped why you know it cost $150,000 to institutionalize a retarded child for life. I'm paying for that what right did they have delay that on the taxpayer? And then somebody else will be saying there ought to be a law. Requiring every mother over 40 to have amniocentesis. And if it turns out that is every potential mother over 40 is pregnant. Have amniocentesis. There's a 1 in 40 chance that the child will have Down syndrome and the test will identify that one in 40 and it should be required to have an abortion. That's what some people are saying. We have a tendency in this country, you know, if we got a test we got to use it. We have a medicine we've got to use it. We have a procedure we must use it. and without much thought we we are rushing pell-mell. I think I am a doomsayer if you think I'm too cynical. Let me tell you that after that screening test for the single. Gene was developed nine states rush to make it mandatory that you be screened for some of these single-gene before you're allowed to get a wedding license. The next step of course would be a limited wedding license. Like I limited hunting license, I guess I mentioned that to somebody and they said can you get a three-day out-of-state license? I don't think it's too far-fetched. People are talking about you know developing the perfect person lets weed out the undesirables. This crazy idea we have it will somehow create for ourselves super race. And so I see that happening. and just just to make it all the tougher. Let me add one more thing two more things in this area growing control over birth dating. I really think it is. This is fun to think about but it's it's going to change that when for some of you when your daughter brings home her first boyfriend. You're going to want to know not what church he belongs to or what kind of family comes. What jeans does he carry? Five years ago. It would have been irrelevant. We have no way of knowing now. There's a test and you see each of us carries six to eight. lethal genes play some 2000 of these inherited diseases. So the odds aren't great that will marry somebody who has one of those same six to eight but each of us carries six to eight on the average. And believe me one of these days descendants of ours probably only a few years or no will wear a charm bracelet or a dog tag. And instead of comparing wallet photos the kids in high school are going to they're going to want to know. What genes do you carry already? It's happening. The black kids with sickle cell is happening to Jewish kids with Tay-Sachs because those groups are much more at risk. We might wish that we could take can stuff it all back into Pandora's box and put the lid on it and say we didn't want to know that. But it's here and there's no way to do that. What we must do is say who's in charge here who's going to decide will society decide which kids can be born. Will there be a committee at the state capitol? Who decides which disease is not my disease as yours? Get passed down to further Generations, or will there be such a discussion among the public that the kind of public policy is set which protects individual rights? I said I'd tell you two things one other thing that's going to come up. We hear a lot about the right to life and I think that's an important discussion. But at Yale law school, they tell me they're starting to talk also about a right not to life. He said before there was a prenatal test for some of these severe crippling diseases like say spina bifida. What are the chances 80% that you will be paralyzed from the neck down confined to a wheelchair unable to move arms and legs unable to control bodily functions, but with the mind that's average or above-average. Before there was a test. It was again like a strike of lightning. Nobody could be blamed know as a 14 months ago. There is a clear safe accurate prenatal test for spina bifida. And one of these days the law school Prophet tell me a young woman will sue her parents for having allowed her to come into the world. the tort of wrongful life and the lawyer will stand up and say If I take a two-by-four and bit a little child, so terribly that it's paralyzed from the neck down and confined to a wheelchair for life. I'm the most terrible kind of fiend and I should be locked up. If I deliberately bring into the world with knowledge of forethought a child which will be in such a position. What am I? I understand. That's not my argument. But that's what some of the people are saying about this new skill this new technology that biology has given us growing control over life over birth. Now if that doesn't cheer you up enough. Let me talk a little bit about the growing control over life and here I'm thinking about the increasingly sophisticated pile of Technology. Which helped us to get other people to do what we want them to do. Behavior control there's a whole series of them. It showed of a spectrum from hard to soft starting with direct manipulation of the brain with electricity with chemicals or with the surgeon's knife. Then the drugs the psychotropic drugs mood-altering drugs, very powerful relatively new then the psychotherapeutic techniques always more sophisticated then behavior modification sort of the dime-store Psychotherapy many of you know about Behavior mod and how it's being used very widely often without the subject's knowledge. And then there's add to that the boob tube and the media and then in the institutions through which all of this is filtered including the colleges in the high schools and you see a whole constructive ways that our behavior is being changed. Psycho-surgery I mentioned this is not cutting out a part of the brain that's disease a tumor. This is cutting or causing an electrical shock to a part of a healthy brain. So that a scar is made there. So that behavior will be changed quote abnormal to quote normal behavior. And that incidentally is the heart of my question who's in charge here as far as the growing control over life. The basic philosophical question. What is normal behavior? And the one that goes along with it who is going to decide? Because in psychosurgery, you can leave through the medical journals. Here's a guy who is a claims to cure depression by cutting away a piece of the amygdala. Here's another guy who claims to cure schizophrenia by cutting out another part of the brain. Here's a man who claims to cure for genital and women and homosexuality in men by cutting in a part of the brain. I was part of a investigative team that went to Jackson Mississippi to talk to one of the finest good old boys. You never want to meet just a glad-handing go to the epitome of southern hospitality one of the top 10 Brain surgeons in the country and he had written in a medical journal that he had been able to cure 9 of 12 teenage boys of by cutting on their brains stealing truancy running away from home incorrigibility and antisocial Behavior Oh God, help us. What is normal? And who decides? Three of these boys have been so badly affected that they had to operate again and then they were so bad off. They had to be criminal and institutionalized so many claimed it been help. Some psycho surgeons in this is being done about a thousand people a year some psycho surgeons can point to real help in stopping certain intractable rages. People that drugs in Psychotherapy could not help at all. Who would once or twice a year flying too terrible blind rage has Tara Furniture threaten their loved ones and so on and be unable to remember afterward and Sona psycho surgeon say they've been able to help people in this condition. But they'll admit that there are unpredictable side effects. A couple of the people have been operated on word helped and in addition hear music all the time. Others have found at the critical faculty has been dealt. I don't mean the critical faculty at this college, but the they the ability to judge a painting to judge music that they said you'd just come out kind of dumb and happy it's not so bad. But there no control studies of psychosurgery. It's being down on anybody who's willing to agree to it and often there is pressure from the family and the doctor and so on. Let me lay this on you. 80% of all psycho-surgery patients are women. And why would that be? We could kid around about it so on but the fact is at least as I believe firmly. And I'm faded hair by Phyllis Chesler has excellent book called women and Madness which I recommend to you. It's a paperback women and Madness which points out how our society defines as normal. For some people what it defines as abnormal for others. Aggression, for example, he's aggressive. He's a go-getter. He's in there fighting. He's moving up the ladder. He's getting 10-year. He's a real gun. He's aggressive. Plus she's aggressive. So are you know, otherwise not a bad person but it is she's an aggressive woman. 2 - we as a society and it's so important in considering the growing control over others lives. We as a society Define for men one side of things is acceptable and unacceptable for women. These powerful tools are wielded with a bias Psychotherapy is one. Do it with electric wires sometimes with knives and so on we can put a wire down and touch a part of the brain that will apparently turn off aggression. And I've sat with Jose Delgado the famous guy who stopped the ball with it a little radio transmitter and a receiver planted in the Bulls head with electrodes going down to the aggression Center in the Bullring the cameras wearing, of course the bull charging him. He presses a button in the bull stops and forgets why it's there. I spend a weekend with Jose Delgado and he showed me that the kind of thing that implants in the human skull. For certain kinds of again intractable rage related to a very rare kind of epilepsy. And when in this person's mind and the patient's mind an attack begins, it sends electric sign up one electrode to the little transmitter goes to a computer by radio the computer radios back another thing which goes down another wire and turns off the aggressive impulses before the patient even knows that it was coming. That's fine. Except that Jose said he's already under pressure from law enforcement people. Doing plant these in the heads of people on probation. You see his research and that of others has also found centers of the brain that produce ecstatic beautiful pure pleasure if stimulated with tiny electric current. And sections of the brain that give you the worst kind of pain you've ever felt in your life if stimulated. So, all you have to do is put in the head of a parolee ice time of silver with a couple of wires. When did the pleasure Center and when do the pain center? He doesn't show up for his appointment parole officer leaning back in his chair with his feet on the desk just presses a button and wherever the parolee is Fang terrible paint. He comes in regularly and he gets a shot of the Good Feeling. We have the technology. I've seen it and held it in my hand now those things. I don't think so mad scientist. It's going to take over the world using those although it's fun to read Kurt Vonnegut Sirens of Titan and read how he trains the army that way. But you have to catch the people and get them to agree to have it installed first. And that might be tough. although the promise of the pure pleasure might be one way to do it when you think of the amount of money we spend just on booze and on grass. You know Millions that's a possibility but a thing that's more, it seems to me. more likely to lead to danger is The use of the psychotropic drug. I'm not against the psychotropic drugs. I remember when there were no trying to call isers. And as a matter of fact, I don't think I would have made it to last night without one because I was on an airplane all night and I took a tranquilizer in an aspirin and prescribed for me by my nurse wife and it helped a lot of us here can remember when there wasn't such a thing. We know that as many as a third of the people who are in Middle institutions 15 years ago. I know out functioning in society because of antidepressants anti-psychotics and Other mood-altering Drugs. It's a great thing. I have a friend who eight years ago by her own testimony. Was a gibbering idiot that's her words sitting each day on the floor against the wall dressed in a sack in the backboard of a mental institution babbling away. Today she is one of the four top editors of an Ivy League press. And the thing that made the difference is that daily? She takes one of these antidepressant drug just playing has to be wonderful biology has really done something there. but of all of the drugs that a physician could prescribe for all of the people in the United States ranging from penicillin to the pill or anything else. You know, what the drug is its most prescribed? volume Do you know the drug that second most prescribed of all the drugs in the doctor's bag Librium? We're popping these things like candy corn. That's one concerned with the concern. I'm here to talk about tonight is that these very powerful drugs the antidepressants and antipsychotics and especially Are prescribed by human beings for other human beings? And it's not like giving an aspirin. These are drugs that not only can change how we Act. But how we want to act? A friend of mine who's in the health unit on a big West Coast Campus known for its disruption. This friend was one of the developers of some of the psychotropic drugs and he told me he said one day that came to me the leader of the current campus revolt. And he was shaking and his eyes were bloodshot and he said doc. You got to help me, you know, we've got the administration building captured and we think we're about to win our demands from the administration except that my troops are beginning to fight with each other the way we haven't had sleep for three nights, and I'm so tired. I don't know how to be a leader in the situation. You got to help me. And my friend Lou said to me. I could have given him one dose of a powerful psychotropic drug and send him out of there just really ready to go back into that situation. And to get his act together and to bring the administration to his knees some people thought that's what was needed on that campus said I could have done that if I thought that was normal behavior. He said I could have given him twice the dose safely and the same drug and send him out of my office at the cheerful smiling dropout. I didn't give a hoot about what they were doing in the ad building. It would go out and sit down against a tree and watch the first one. If I thought that was normal behavior. You see what I mean? Biology has given us the tools not only to make people act a certain way but to determine how they want to act. And these tools are prescribed by a human being usually a physician. And human beings have biases. What I'm here to say is that we as laypersons as patients when it begins to get from the medical over into the more. How we want to act what is normal who decide we need to be in on that part of the decision? another example more homely one Across the country, they did a double blind study carefully controlled random sample of Physicians and patients. And they found a clear significant difference when a man came into a doctor's office with an aching back. The doctor would examine the back and treat the back. When a woman came into the doctor's office with an aching back there was a clear difference in the direction of examining the head and prescribing a tranquilizer. the women's movement had been telling this us this for a long time and it's no surprise and a sexist society that doctors are sexist to but here again with a powerful more powerful drug than before it's more and more important that we begin to say, what are the biases with which these are prescribed. Another example you may have read about there may or may not be a an illness in grade school boys called MBD minimal brain dysfunction. If there is such a thing it hits as a maximum 1% of all grade school boys the man who discovered the thing told me 1% of all grade school boys in the way it manifests itself as in hyperkinetic activity. That means Johnny can't sit still around bugging the other kids bugging the teachers running around in the classroom. Just can't sit still. And Paul Lindner discovered that Ritalin. Yeah in the proper dosage would help these boys settle down and function in the classroom environment. Okay, except that one day they woke up in a major Midwestern City and found it 30% of all the teenage boys wear on riddle. Because the teacher wasn't going to say Johnny can't sit still because I'm a bum teacher. Or even Johnny can't sit still because of the pressures at home or God help us set Johnny can't sit still because 7 and 1/2 year old boys weren't designed to sit still for 5 hours. Instead it's easier for us to say there's something wrong with Johnny. And you call for the school psychologist in the psychologist sends a note home in the parents are all worried and the psychologist recommends that they get the doctor to prescribe Ritalin and you had 30% Who decides what's normal? What is normal behavior anyway? growing control over life and finally throwing control over death. This is a subject that not only has amazing new technology, but it suddenly proper to talk about it. This was the last of the great taboos. And we could all talk about sex even with our parents Around The Breakfast Table long before we can talk about death. But I think this is one thing that Karen Quinlan has done for us. Has made it possible. It has made it urgent for us to talk about death. And here the dilemmas are great, too. Because it used to be you knew what death was you had a little mirror and your doctor's bag and you put it up to the nostrils of the patient and when there was no longer any fog on the mirror, you knew the patient had stopped breathing and he was dead. And then the definition change because we developed the stethoscope. Until you listen to the heart and as long as you could hear that hard bump bumping you knew that the patient was alive and when it stopped the patient was dead. And then Along Came the ma1 respirator. And here you can have a patient breathing normal color blood circulating heart pumping. And the minute you turn the respirator off at all stops. So now when is that? Well a committee got together at Harvard in 1968, and they said will develop some criteria and they said when there's no reaction to pain. 4% of the respirator no reaction to loud noises. No reflexes. No eye movements couple of other things like that. Then if you want to you can wheel in an electroencephalogram that's only for confirmatory reasons. Incidentally. It's not the basis of the diagnosis, but you bring in the brain wave machine and hook it up and you got a flat brain-wave you turn off the respirator for a minute minute and a half and the heart stops. I just showing that it can't get along without it. You turn it back on no damage will be done in that time. And then you go through this whole rigmarole 24 hours later. You do that the Harvard committee said and you get the same results, then you can pronounce the patient dead and you can turn off the respirator. Are there several reasons for this one was the fudging is a line between life and death but we always could let the Philosopher's argue that up on the third floor the philosophy building but suddenly it was right there in the sick room and people weren't able to to deal with another reason for the Harvard committee. Was that the heart and lung transplant had become possible and there was some beginning to be some if he cases where the people eagerly awaiting the kidneys the team the team we're getting a little too eager and judgment. Sometimes was not exactly clear as to whether the other patient was absolutely clearly and by all accounts that So they set up those criteria. Well, that's all very fine. Except. She had some reaction to pain you poker in the leg and arm would twitch it wouldn't be the right reaction, but it was reaction. Her eyes did move one goes down one goes up, but they do move. She doesn't meet the criteria and yet all agree that she's an irreversible coma So what do you do? Well in Karen's case the family after talking at length with their Pastor or priest praying about it. They went to the doctors and they said our daughter is dead. It's clear. She'll never come back. She'll never feel see hear. She's dead and it highlighted one of the problems that we have in our society. Which is that we put doctors in a box. They not done it themselves. They've adapted to it. But we as a society are to blame we made them the last of the high priests. We look to them for answers far beyond their medical competence. So that well this neither of these doctors had had any kind, of course in ethics. good competent medical man, when the Quinlan family said to them what will happen if you turn off the respirator the doctors gave them a medical opinion if you turn off the respirator the heart will stop. Okay, then the Quinlan said please turn off the respirator and then the doctor said it would be wrong to turn off the respirator. That's where I believe the Physicians went beyond their competence. left medicine and went into the ethical are I believe it was an abuse of professional power. I've been involved in the case. I know nearly everybody involved in it. But the basic problem then we're to she didn't meet the height of a Harvard criteria the conservative criteria for being dead and we have endowed the doctor with such power that when he said no, I want turn it off and they said we want to change doctors and the doctor said no, we won't let you. Then there was no recourse but to the law and that was a tragic mistake. It never should have got to the courts. The Court's weren't equipped to deal with the Karen Quinlan case. And so you had that it would be I think another tragic mistake and we thought Karen Quinlan we're all alone. Because there are people on respirators. Dead people by my definition Harvard criteria by the hundreds. Maybe by The Thousands across the country. My wife comes home from the night on the Intensive Care Unit. There's a nurse and she said all for respirators were busy tonight. They were all elderly terminally ill cancer patients all unconscious. And into the emergency room came a 35 year-old man has been in a car crash and he desperately needed to get on the respirator right away. Do you think anybody blocked got a court order and stop them from taking somebody off the respirator? A decision was made that night. I don't know how it was made. I don't know who made it. We don't have a procedure for making that decision. But you can be sure that one of those old folks was Zapped off the respirator and the young guy was on. Expressing one of the biases of our society incidentally young versus all but what I'm trying to say is that Karen Quinlan is by no means alone in this happens every day and every night. In Texas, there's a 15 year old boy on the respirator got into a fight with a friend in the schoolyard the friend hit him with a baseball bat and caused irreversible damage to the brain. The boys on the respirator. They know the parents have accepted that he's legally dead, but they've asked the respirator not be turned off. Because the boy who hit him is in the juvenile detention center charged with attempted murder. The minute you turn off that respirator the charge changes from attempted murder to murder. Did you see it in the papers last week young woman in a car crash rushed into the emergency room heart had stopped to put her on the respirator. I found that the brain damage was irreversible did the tests were about to turn it off when they discovered a fetal heartbeat. She was carrying a fetus alive fetus. And then suddenly the question and it was about four and a half months along. Shall we keep this dead woman on the respirator for four and a half months so that the fetus can grow determined be born. growing control over death and yet I hope I've convinced you that we haven't begun to do the homework. The homework to decide these cases. Uncle Joe Is on the respirator? The family accepts that he's dead. My father was out on the west coast and who doesn't like to fly is coming back on the train you be heartbroken if you came back and find Uncle Joe in his coffin already doctor. Would you just keep him pumping there for two more days? Now that's happened. And I don't think that's a big problem for most of us. If it isn't keeping somebody who needs it off the machine. But what about the other case that's happened. I've changed this just a little bit to protect the guilty but The case where father is on the respirator the family accepts that he's dead. But he's their natural color heart pumping breathing and they come to the doctor and they say doctor is the 31st of December. And father was even though he was a multi-millionaire. He was an eccentric one and the will he left says that if he died in this year. All of his money goes to the cat and dog hospital. But if he dies next year, which is just 24 hours from now. The money comes to us. And we've always wanted to endow a wing on the hospital here. If it just keep him going. Decisions given to us which were not ready to deal with. Now they're there isn't time unless you want to do it in the question. In time to get into a lot of the other questions that surround life and death but the question of who is in charge here looms large. Because with increased technology not only the respirator. But with the so-called Wonder drugs with the Pacemakers and so on. The Physician is now able to keep people going beyond the point where it might make sense. Just a few years ago. He could do everything that he could and not seem to cross that line. I think maybe the question of pneumonia was where it first really became tough. Pneumonia was called the old man's friend. And that was because often when you had a patient dying of cruel cancer terrible pain near death. Pneumonia would come and strike the patient and take the life earlier than the cancer wouldn't. And in a much less painful way. And the doctor could do nothing but say well there's the pneumonia and sort of to himself. Thank God. And then suddenly we gave the Physicians the tools to fight pneumonia. Just after World War II. and all of a sudden when his patient is hit with the old man's friend The Physician had to say do I violate my oath and not treat and let him die more merciful death, or do I treat knowing that it'll extend an agonizing life? And we suddenly find that because of their own inability to deal with death many Physicians are striving against death striving long after life is cease to have any meaning I rarely give one of these talks. Without somebody coming up afterward and saying my dad my grandfather my mother, so I'm pleaded with the doctor. To stop the chemotherapy stop the radiation. Stop the IV feeding. Let me die in peace and the doctor refused. I'm not painting all doctors with this, but it happens a lot. And some more and more people are saying wait a minute. I'm in charge here. It's me that's going out. It has been accepted over the years that you have a right to refuse medical treatment if your wish and yeah dies in Karen's case that right was abrogated. So what it's brought us doing a lot of cases is the living will and you've heard about it. I'll letter that you write follow a certain form leave it for your doctor saying if I'm unconscious. Clearly dying clearly terminally ill death is imminent. I don't want you to go on with a lot of Extraordinary Measures. Let me go that's my wish. And a lot of people in fill those out and have them notarized and signed. So on the problem is we still given the doctor the power. Hey medical Tribune did a survey? And they said to a random sample of Physicians. Would you like to be able to leave a living will for your own physician in case you're unconscious at the time of your debt and 90% of those doctor said yes, I want to be able to leave a living will for my physician then another questionnaire. It said would you obey a living will from one of your patients if you disagreed? And only 40% said they would obey the living room. So we are in a bag here. Now my state, California. About a month-and-a-half ago finally passed and got signed a bill. It said the living will is a legal document. The Physician either mustoe bad or refer to a physician who in good conscience. Can OBET takes the position off the hook for malpractice? And you can write out such a document lots of protections. It lapses every 5 years. So you have to redo it case you change your mind. You can revoke it verbally. A lot of different kinds of protections, but basically it says the patient is in charge here. The patient is the one who has the right to say. And then I believe if the patient is not competent and didn't leave a living. Well, then the next of kin are the least worst people. They're the people most likely to know what the patient would have wanted. It brings back. I hope to you the fact that we must be discussing these things with our loved ones with our doctors with our lawyers deciding since this kind of choice control over death has been put in a hands deciding how we want to do it one final warning though. It all maybe moots we might discuss all we want to but we are a cash-only ended society and Healthcare in this country is in a CLD deliver. And one of these days the third party payers the health insurance companies are going to come along and say 90 days on the respirator no more. And all of our talk about who ought to be on and who ought to be off and everything else will be taken care of the way all too many things are by the Greenback. Growing control over birth over life and over death and in each of these cases I said who's in charge here? I hope you've heard me make the same answer in each case. We have left to the professionals. until the lawmakers into a small handful of the people who were sold on the inside. too many decisions in the new era where we have growing control over birth life and death you and I are generals too and have not only the right but the duty were these decisions become ethical ones to inform ourselves and to have a hand in making those decisions. Thank you. Bruce Hilton founder and director of the national Center for bioethics in Berkeley, California Hilton Hill United Methodist, clergyman is a former journalist and a civil rights worker. He's also a member of an international group that drafted a statement on genetics in the quality of life in Zurich Switzerland and a member of the task force on human life and the new genetics sponsored by the National Council of churches the American Society of human genetics, the National Association of science writers and the task force on the masculine Mystique of the National Organization of Women. This recording was made during a recent visit Hilton made to North Dakota State University. I'm Dennis Hamilton.