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tv   The Miller Center National Debates  PBS  July 11, 2010 2:00pm-3:00pm EDT

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narrator: this program was made possible by the generous support of frederic w. scott, jr., anne r. worrell and the lumina foundation. the economy has changed. workforce needs have changed. and in the 21st century skills must change. higher education is a key to solving these challenges. the lumina foundation for education is committed to graduating more students from college because education beyond high school is the best investment we can make in the future. and additional support from engaged citizen donors to the miller center foundation from across the nation.
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the world, our nation, education, society, the miller center of public affairs at the university of virginia presents the miller center national debates. susan dentzer: welcome to the national press club in washington, d.c. and to the miller center national debates. tonight we focus on the question of whether the united states should ration costly end-of-life care. i'm susan dentzer, editor in chief of "health affairs," the nation's leading health policy journal, and an on-air analyst on health issues for the pbs newshour. joining us tonight are four participants with broad knowledge of the topic at hand. arguing that the united states should ration
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end-of-life care is ira byock, a doctor, a professor at dartmouth medical school and a director of palliative medicine at dartmouth-hitchcock medical center in lebanon, new hampshire. his teammate is arthur caplan, director of the center for bioethics and a professor at the university of pennsylvania. arguing that rationing is a bad idea is ken connor, chair of the center for a just society and a lawyer in private practice. he represented former governor, jeb bush, in defense of terri's law, the legislation name for terri schiavo. he's a former president of the family research council. and his teammate is marie hilliard, director of bioethics and public policy at the national catholic bioethics center. she's also a registered nurse. well, welcome everyone. thanks for being with us this evening. before we begin our debate, let's look at some background. narrator: every day families face wrenching decisions about end-of-life care for
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elderly grandparents, premature infants, family members with terminal cancer or victims of extreme trauma, and sometimes individuals face those decisions about their own care. some say because the u.s. has the best medicine in the world, americans are entitled to take advantage of all of it. but often families bankrupt themselves in their struggle to keep loved ones alive a week or month longer. religious and spiritual beliefs also play a role in their decisions. many believe that if they have health insurance they can spend at will, even if it means higher premiums are passed on to their fellow workers. a recent gallup poll noted that 93 percent of americans say it is either extremely or very important for their health care plan to cover any medical test or treatment they and their doctor think is necessary. medical costs at the end-of-life are especially
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high with more than one-fourth of medicare expenses in 2009 about $143 billion going to treatment in the last year of life. and without changes the current medicare program will be insolvent in seven years. the enormous costs have led some to ask if health care should be rationed at the end-of-life. and who should make such decisions, insurance companies, the medical community, the government or a panel made up of representatives from each of these groups. many argue that rationing already takes place. insurance companies limit the number of paid hospital days, emergency rooms triage patients, and the recent h1n1 swine flu vaccinations available in limited amounts at first were prioritized for health care workers and those at most risk. others argue that rationing is a slippery
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slope and that health care decisions should be made by patients, their doctors, their families and perhaps a religious or spiritual adviser. they believe that rationing care is unethical, that it could unfairly impact the poor, can be arbitrary and would only result in small cost savings. others argue for what they see as a more rational approach to end-of-life care, with greater use of advance directives and hospice care and better information about treatment options and their success rates. while cases such as karen ann quinlan and terry schiavo make headlines, most people don't have to deal with such extreme situations. but end-of-life care is an issue everyone will have to face. dentzer: and now to our debate. each participant will have a three minute opening statement, starting with arthur caplan and alternating between teams. first, then excuse me, then we'll move to
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rebuttals and a wider discussion that i'll moderate. the debate will conclude with two minute closing statements from each team. again our debate resolution is the u.s. must ration costly end-of-life care. up first arguing in favor of the resolution is art caplan. arthur caplan: thank you. you know, it's difficult to go to the doctor. we get news we don't like. sometimes we get told to do things we don't want to do, lose weight, wear a helmet when you ride your motorcycle. i'm here to tell you some news that's difficult. we are in a situation where we are going to have to ration health care. it's not news we like to hear, and when i say rationing, i mean pretty simply that we can't get everything we want when we're dying. i think we have had in this society until very recently a technological blitzkrieg for the dying,
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almost anything and everything that we can imagine is applied to those who are in the final days of dying. it becomes difficult to move them away from that technological assault. it's hugely expensive, until very recently, we paid for it by a hedonist form morally of rationing. and that was to exclude 40 million of our citizens. we helped pay for the dying and what we do by leaving many people uninsured. well we've made some progress and started to repair that. but the question now is how are we going to afford to continue doing what we do at end of life? the situation is going to get worse. we have a situation where the population is aging. people over 65 consume three to five times as much medical resources as those under. we all know what the statistics look like in that medicare program where huge sums of money are being spent on the final days.
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and there is more technology coming in the pipeline, more things to spend on more things that people want. so i contend, and our team contends, that rationing is something we do. we can't give everything to everyone even now. we only did it in the past by excluding people. every nation on earth has to ration, they all do. we will too. we're going to have to make some hard choices at the end of life and the demand curves indicate that that's just a necessity. the issue isn't whether we're going to ration, the issue is how. how will we be fair? how will we be just? how will we not pick on particular groups and discriminate against them? and can we allow people to have the kind of dying that they want? i don't believe they want that technological blitzkrieg in their final days, many do not, and one form of rationing is to ask people to forgo. but we can't continue the way we are. we rob our young to treat our dying. we don't educate.
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we don't do the infrastructure. we don't do the community justice by pouring resources into the final days of life when there are more possibilities open to us for the young, for the next generation, for those to come. so i think the issue is not should we ration, it's how will we ratio? dentzer: thank you, art. now arguing against the resolution, ken connor. ken connor: art, the very last thing the american people want is to have a bunch of bureaucratic bean counters in washington, d.c. dictating to them how medical decisions are going to be made at the end of life. medical decisions are best made by people who at the bedside, families, physicians, the patients themselves. they should be made by the people who have their feet on the ground and who are in touch with the real world conditions and whose primary motives are not to save money. americans don't want cookbook medicine. they don't want one size fits all solutions that don't take into account their particular situations.
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they want their doctors to be able to make judgments about things that are in the best interest of their patients, and they don't want their doctors straight jacketed in a bureaucratic straightjacket. now let's not kid ourselves, folks, about what rationing at the end of life means from a government standpoint. it's an embrace of a philosophy that was advocated by governor richard lamm, who said that the elderly have a duty to die and got out of, out of the way. rationing at the end of life will inevitably wind up leading to a devaluation of human life. it's a euphemism for your useful life is over and the cost-benefit ratio is now skewed against society. that mindset i would submit endangers not only the elderly but also the infirm and handicapped of any age. indeed, anyone who costs more to maintain than they produce.
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government simply can't be trusted to make life and death decisions for the infirm. it's already shown itself to embrace a utilitarian disposable man ethic. the folks who brought us the disposable man mentality of roe versus wade and the tuskegee experiments won't hesitate to apply the yardstick of inconvenience to those whose quality of life is diminished or who costs more to maintain than they produced. there are better ways to balance our budget than on the backs of the sick and the dying. estimates are that the medicare and the medicaid programs are being defrauded of over $60 billion a year. why not turn the screws on the perpetrators of the fraud rather than on the patients who are supposed to be the beneficiaries of such programs? something is profoundly wrong in america i would submit when we can spend trillions of dollars bailing out banks and brokerage houses and the big dogs on wall street who are the victims of
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their own greed and selfishness, but we're going to deny medical care to those who are sick and dying. and so to the proposition that government bureaucrats should have veto power over the reasoned decisions of physicians and patients and their families as to what treatment is necessary at the end of life. i maintain that we should just say no. dentzer: thank you, ken. and now we'll hear from ira byock. ira byock: rationing is such an emotionally charged word, which may well serve for an exciting debate tonight but i think there's actually a more exciting opportunity available to us. it's to transcend the divisive terminology of rationing and reframe and refocus on the core challenges we all face and the goals we share. at the most basic level, we human beings live on the earth, less than 25,000 miles at its widest circumference, less than many of us drive every year, hurdling through deep space protected from the frigid galactic void by the thinnest layer of air.
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the fundamental question that confronts us all is how then shall we live? within this encompassing question, the focus of tonight's discussion is how shall we care for one another through the end of life? on this small, green planet we have finite resources and our challenge is to allocate them fairly, justly, wisely and humanely. as has been pointed out, we already ration. we just don't do so very well. some rationing of course is embedded within the morals of our culture. when a ship is sinking, the call goes out for women and children first. and few of us would call that immoral. both as a father and as a citizen, i would readily accept some rational limits on treatment for my own far advanced condition, heart disease, lung cancer, liver disease in order for my daughters and their children to have access to health care that they need.
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one would think that mortality would be the ultimate unifying force that brings all people together. instead ironically mortality has recently become a polarizing, political topic. a cultural chasm of distrust threatens to divide americans. some allege that in allowing people who are approaching the end of life to die gently, without subjecting them to cpr and breathing machines and dialysis and feeding tubes. doctors and nurses are guilty of promoting a culture of death. in truth, the professionals who work in america's icus, cancer centers, hospice and palliative care programs are the most pro-life segment of american society. a reverence for life permeates the work that we do. but to truly affirm life, one needs to affirm all of life and that includes the part we term dying. in upholding the inherent value of human life, we cannot act as if dying is optional.
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both as individuals and collectively as a society, we must understand that some treatments are, when they are intended to save or prolong life, make no sense at some point. we need to decide when they do and when they don't. since we are mortal, more treatment is not always better. sometimes it makes things worse. sometimes, it actually hastens death. and asking how shall we care well for one another, it is also proper to ask how can we help people to die well? although debates depend on heated differences of opinion, my hope is that we can transcend hyperbole and come together to recognize common challenges and, as influential voices in our national community, help lead constructive dialogue. dentzer: and now we will have an opening statement from marie hilliard. marie hilliard: like dr. byock, i am a health care provider, and there are some sacrosanct principles for the health care provider, autonomy, consent,
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beneficence, justice. and i think we agree upon those. from the time of hippocrates, the role of the physician has been separated and distinct from the sorcerer, the sorcerer, the person who helped people die. that was affirmed by the geneva declaration in 1948 that said the primary function of the physician, the first priority, is the beneficence toward his or her patient. rationing violates that. it violates consent and autonomy. as the largest provider of non-governmental health care in this country, the catholic church, we're intimately aware of the need for health care reform. but this reform must be based in justice, non-discriminatory, not discriminating against the disabled or those who are vulnerable because of their stage of development early or late in their development. government clearly has a role in our society
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in making sure that affordable and quality health care is available to all persons and we do that in a number of ways. we do that through our licensing laws to prevent negligence, quality assurance standards. we also can do it through mechanisms where we study comparative effectiveness as long as the results in those studies aren't used discriminatorily, i.e. discriminating against younger women in terms of mammographies. we have to make sure that we don't discriminate and that's what the baby doe law was all about. the baby doe law, preventing discrimination to newborns born with disabilities, and rationing would violate those laws. if we look at the last forty years and what has been used in terms of medicare, in terms of dollars in that last year of life, it has remained stable and consistent with western europe, except for the country of switzerland. that has remained stable. where we need to focus it seems in the age groups between 65 and 85 years of age.
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we need to do better education like robert wood johnson sponsors. and i was a cofounder of a coalition in this state where we continue to provide education to providers, medical students and to consumers so good dialogue will occur. so autonomous decision making can be made with the professional so that consent isn't violated and that other people aren't determining our quality of life, saying for us what our dignity is, that we allow the physician to be operable in our best interests, for our beneficence, not making arbitrary decisions because with rationing, the physician becomes the gatekeeper. he becomes the agent of the state, he or she, and it does violate that sacred role of those four principles i started out with. dentzer: now, we'll get rebuttals from each team starting with the team in favor of the resolution,
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so we'll hear from you, art. caplan: well, i have to say i find it shocking that ken, our lawyer friend, believes that humanity is of such a nature that we would be able to fund the future by eliminating fraud. this level of optimism is rare in debate. i believe that the numbers speak for themselves. we have hard choices to make, difficult choices to make. and in the sense that not everyone can get everything they want, i believe that the case is clear. the numbers just don't stack up. we're not going to be able to act as if they do. that said, i hear the worry about government. people do not like it when government said we're going to intervene in the terri schiavo case. people don't like it when government intervenes at the bedside at different levels. they don't want governors and congressmen and bureaucrats telling them what to do. fair enough, but that isn't the only way to ration. we should be looking, in the spirit of marie's
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comments, toward not rationing people, not the disabled, not the weak, not the vulnerable, but procedures. what's marginally effective? what doesn't do very much good at all? and then, if we can start to explain this to people, i believe we will see some forgo the marginal, the hyper-expensive, the painful and burdensome. the dying often do not want to be burdened by everything that medicine has to offer and we may be able to contain resources not so much by bureaucrats telling us what to do but by people saying "i forgo that, i waive it, i don't want to have it and do not force it upon me." dentzer: and now, from the team against the resolution, ken connor. connor: look, no one is suggesting that we shouldn't be good stewards of scarce resources in this country. what we're suggesting very simply is that there is nothing that equips government bureaucrats to make quality of life decisions about people who are dying. and the reality of our experience in washington
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and the real world, art, is that there is not a one-for-one exchange when it comes to saving money on a particular area and applying it to be used in a related area. in washington, when savings are made, there are 535 members of congress who are eager to pounce on that savings so that they can put it in pursuit of some special project in peoria or perhaps award a favored campaign contributor with an earmark or something else of that nature. what we're suggesting to this audience very simply is that end-of-life decision making ought to be made by the physician at the bedside, by the family of the patient and by the patient themselves. and that some bureaucrat who is remote to the bedside who doesn't have a feel for the real world conditions and who isn't in touch with the exigent
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circumstances at the bedside ought to be dictating in advance on the basis of objective set of criteria what ought to happen in a given situation. that's not the way medicine ought to be administered in the united states of america. dentzer: all right, let's move now to a broader discussion and in general only one member of the team need answer each question, but you should all feel free to jump in at any time. so let's start with this proposition that we're already rationing health care. what is wrong with deciding that we do have some limits on resources even as we bring everybody into the town, why should we not make some reasoned judgments about how to allocate our resources most effectively? connor: well, i think the reality is that there is a form of implicit rationing that goes on in this country. sometimes decisions are based on a denial of care or a delay in receiving care or to people who can't afford care. there's no question about that and no question about
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the fact that i think that there's a better way to skin the cat in this arena. but the reality is that when we put government in charge of picking winners and losers with respect to end-of-life decision making, i think we're making a profound mistake and we already know from past experience that government embraces a utilitarian disposable man mentality. dentzer: isn't government us? connor: well, government, i think the american people would say right now that congress is not representing the views of the american people in the main. we have a spirit of hyper-partisanship. we have a sense of zero sum calculus on capitol hill, and the american people want to see members of congress come together and represent all of america and what's good for americans. but what's happening, frankly, in washington, d.c., is that the interests of the special
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interests are being represented in the main and wall street trumps the interests of main street virtually every time. dentzer: ira, you're a palliative care doctor. first of all, for the audience, just explain briefly what palliative care is and then i'll ask you a question? byock: palliative care is a team-based approach to care for people who are facing life-limiting illness and their families, and we focus on people's comfort and quality of life, decision making often in difficult circumstances such as we're talking about now and follow them through the end of life. dentzer: so you've been a doctor at the bedside of many dying patients. byock: i'm a practicing physician these days. dentzer: do you want the government getting between you and your patient? byock: well, i have to say that we physicians don't want to be making these decisions on a case-by-case basis. it's wrenching. you know, doctors love their patients. they want the best care possible for their patients and it's really impossible to limit in any rational way care for a patient who's demanding or
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just wanting to live as long as possible, whether that is a heart transplant or a liver transplant or the fourth or fifth line chemotherapies for a cancer that we know is incurable. i think the large majority of physicians would say we want this decision to be made on a communal level. maybe it's not the faceless bureaucrat, i would agree with you on that and i don't have a lot of faith in congress myself these days to wrestle with these decisions. but somehow a process that's transparent and it involves people from many walks of life including clinical, clinicians or ethicists, theologians, people who really can represent the broad variety of americans need to set communal standards alleviating the responsibility for physicians to make these decisions. it's much easier to care well for people and to provide them with the best care possible when the limits are being set in a rational way beyond us.
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dentzer: that sounds like a pretty good decision making team, marie hilliard, what would be wrong with that? hilliard: no matter what those decisions would not be taken out of your hands in rationing. actually, you would become the gatekeeper. you would move from the hippocratic role to either the entrepreneurial business role, where money counts, or the social service role, where decisions are going to be made because you're the one who's going to be determining whether that person's quality of life is minus 25 as is done in great britain now. so you are going to be put in the position of i think deciding with the government over the patient in terms of what care will be provided. dentzer: art, there is an old saying american's behave as though death were only an option, a kind of a lifestyle choice, if you will, that we could pass up. you basically frame it as we only have so much in the way of resources. by the way we would like to leave something to our children. is it fair for us to be able to say i want
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everything all the time? caplan: absolutely not. a community must make provision for those to come. a community also has to educate, a community needs infrastructure and if you look at the community we're in we're spending a ton of money on health care, 17 percent last time i looked, a huge sum of money. we have lousy roads, broken schools, some people going to bed at night hungry. we have a lot of priorities out there. i understand the desire to do what we can for the dying. but when it's marginally useful, when it's uncertain in terms of outcome, and when it's very expensive, when the next generation of drugs start to show price tags of $100,000 to gain two weeks. i don't want a person in washington saying ok, you can't get that, but i would like standards set up by doctors that say here,
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as an experimental intervention or a hugely expensive intervention, the standard of care does not require you to do this. here, at our hospital, we're going to offer it to you but you are free to decline it, respecting autonomy even though the desire is to be beneficent. i think we have to come up with an approach to rationing. particularly in light of the huge costs that are around the cusp of starting to see with the next generation of interventions that involves the public. not congress, i mean what's congress good for? maybe the victims of rationing, i don't know, we should try rationing them first. but short of that, we need to come up with a transparent open discussion, out, no star chambers, no hidden committees, where people say this is what the decent minimum is. maybe if you have some more money you can buy it. and other things, the new, the experimental, the hugely expensive, we're just not going to make those available to everybody by the way because we can't. we've got to have a school. we need a road. we've got to make sure that we have other,
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even recreation, the quality of life is not just set by what happens in a hospital. dentzer: now, what's wrong with that ken conner? you say you're not a utilitarian. you don't want to spend all kinds of money on futile medical care. conner: nobody on our side is advocating that anything and everything goes at the end of life. what we're saying is that government bureaucrats ought not to be the ones to make those decisions. dentzer: i think you got buy-in on that. conner: and doc, i know that doctors may not be comfortable playing such a prominent role in that kind of decision making but the american people trust their doctors to guide their decision making. they don't trust their congressman. they don't trust somebody who serves on a committee in washington, d.c. they believe that their doctor has their best interests at heart. they believe that their doctor has a fiduciary relationship with them pursuant to which the doctor seeks the best interest of the patient. not their own economic interests,
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not the interests of the broader society, but the best interest of the patient. can you imagine me as a trial lawyer saying, you know, if i'm asked to represent somebody accused of robbing a bank, and i decide well, you know, i'm not really sure it's in the best interests of society that this guy not go to jail. so i'm not going to afford him a zealous defense. the legal system would be in a shambles. and if we take the role of the doc out in a central role and we substitute government bureaucrats for decision making that ought to be made at the bedside, we're headed for big trouble. dentzer: now, this debate is so abstract. i want to make it a little bit more concrete. let's get to some actual hypothetical situations so that we can get a sense of how doctors and others actually make these decisions. so here's my hypothetical example. a man has an 86-year-old grandmother who has terminal cancer. she's got less than a year to live. she falls and breaks her hip.
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she needs a hip replacement that will cost about $45,000. what do you tell him to do? ira? byock: well, this is not an uncommon situation at all. often when people fracture a hip, for one thing as a palliative care doc, i try to get that hip fixed because it's extremely painful. it makes nursing care difficult, and it may shorten her life quiet a lot less than that year. so here's a place where high tech, if you will, and operative palliative care is certainly appropriate. dentzer: ok, now let me introduce another fact into this scenario. it turns out medicare is going to pay the cost of that $45,000 which means everybody as taxpayers is going to pay for this woman getting her hip even though she's probably not going live a year. ken? connor: look, if my doctor thinks it's reasonable and necessary and has therapeutic value and is going to provide me with pain relief and improve the quality of my life during the remaining year that i have, i want to go with that decision. i don't want somebody back in washington, d.c.
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to view me as a category or a commodity rather than as a person and to presume to dictate what my course is going to be and to say, no, 86, sorry. thanks for the memories, but be on your way. dentzer: ok. now another fact, it turns out that in order to keep feeding the medicare program they're going to have to stint a bit on child health care, marie. so what should happen? hilliard: well, it's not an either or and a number of the models that we look at in terms of the role of the physician that's one of the models is the social service model where we look at how we allocate resources. and we're not looking at how we can make sure we have better acquisition of resources. it shouldn't be an either or. dentzer: can we do it all? hilliard: we cannot do it all. but we have to make sure good education is done and good decisions are made autonomously, with families, with physicians who are not made to feel uncomfortable
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in telling people that this is not going to be in their best interests. we think that this treatment, this procedure really is not only not in your best interests, but might even be harmful. it's hard for physicians to do that, for healthcare providers to do that, but we have good programs funded by robert wood johnson that help physicians to learn those skills, to work with families. dentzer: all right, well, let me go back to my scenario. so we've told this man go ahead and get your grandmother a $45,000 hip. it turns out she dies a couple of weeks later. it also turns out that this man was barack obama because this actually happened. art, did he make the right decision? caplan: i'm not sure because i know barack obama said "i would pay for this out of my own pocket," but i'm not sure whether he knew whether it would work or not. my partner ira says you can keep people going and really extend their lives in useful and important ways by giving them that hip. but let me add one twist to your case,
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what if she has advanced alzheimer's? so she needs the hip, but now where are we? i think i might engage in a discussion if i was doing the ethics counsel that said look you're mom is, even if we give her the hip i'm not sure she's going to be able to function well with it. i think ira's scenario will change. did she say anything about was there a time at which she would want to forego anything or not have this kind of operation done if she couldn't enjoy her life, communicate with others. and i think that some would answer that yes, and i don't consider that immoral or unethical. what i think it is, and i'd tell barack obama this, too, is be informed by data. don't worry about the bureaucrats in washington. let's really pull apart, what does it mean to get an 86-year-old with a hip replacement who's severely demented? what's their future going to hold? dentzer: all right. so now i bring on you, ken connor, as the ethics consultant in this case, what do you say, that case that he proposed? connor: look, my professional life is spent representing victims of abuse and neglect in
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nursing homes, and i can tell you that america's dirty secret is the way it takes care or doesn't take care of the elderly in nursing homes. and the demented and those who suffer from alzheimer's are treated as second class citizens. i don't believe there's a sliding scale of dignity. i don't believe simply because your faculty's decline that somehow you should be relegated to the back of the bus. that's wrong. i also think the basic flaw, frankly, in the proposition that you're advancing, susan, is either. dentzer: i'm not advancing. i'm the moderator. connor: is that either we ration or we go bankrupt. those are the only two alternatives that are being advanced. i don't think those are the only two alternatives. we can allocate more resources to health care. for heaven sakes, we spent tens of billions of dollars on aging sclerotic car companies who had lost their competitive edge and infused them with billions in an attempt to resuscitate them. we spent billions more for cash for clunkers,
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for heaven's sakes. caplan: but they lost their edge because they died on their health care costs. that's what killed them. connor: what you're saying is, art, what you're saying is that if you're a human being who's a clunker you're out of luck. caplan: i'd say if you're a human being who doesn't see a future with an artificial hip if i'm demented, make room for that person to forego those resources. connor: well, here's a news flash. my experience has been that the perceptions that people have about the quality of life of the frail and the elderly and the vulnerable and the handicapped aren't necessarily shared by those people who are (inaudible). caplan: why don't you talk to them before they make their decision? dentzer: let's turn this back to somebody who lives this. byock: well, i really agree with you in many regards. that lady should get her hip, but she doesn't necessarily need a titanium hip that's designed to last 50 years. maybe a stainless steel hip that's designed to last 15 years is good enough. but there's another stakeholder here and that's industry. industry keeps pushing on doctors the latest and greatest, the implantable cardiac defibrillators
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that can cost up to $90,000 per person. if this woman with terminal cancer has an arrhythmia, should she have an implantable defibrillator? should she have the titanium hip? these are decisions that doctors don't want to make without a societal framework and that societal framework, as you rightly said and you know it from your work, disadvantages those of, those in nursing homes. the staffing level in nursing homes is a national disgrace. sometimes 15 people who need help in eating for one aide. there are people starving in nursing homes, not because they can't eat or don't want to eat, but because they need help in eating. so the way we staff nursing homes, the way we underpay the aides and nurses who work there who are heroes in america today, is a national disgrace. and on just paying for anything that a patient wants at the end-of-life, there is the consequence that some people don't get into the life raft. connor: well, i don't disagree at all with that,
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but again, you're much quicker than i to try to take the doctor out of the loop. byock: i don't want him out of the loop. i just want the society framework. connor: and to have your decision making dictated by someone remotely. and what i'm saying is the american people want the informed decision recommendations of their doctors. and that the people and their patients and their families, along with the physicians ought to be the ones making that decision. we don't want somebody a thousand miles away saying, "sorry, 89 years old, demented, end of story. no further discussion." dentzer: all right. so let's go back to my scenario. we've added the notion that the woman has alzheimer's. let's say the family gets together and says, "you know, mom's lived a long good life. we know she wouldn't want to stick around in this situation. so even though maybe it'll be painful for her to suffer from not having her hip repaired, that's ok.
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let's save those resources for society." is it ok, marie, for them to make that decision? hilliard: it depends on whether or not they have been delegated that by her, and that's where health care agents and advanced directives come into place. where the person, when they're competent, should have a very good discussion, usually with a family member who hopefully is not overly vested in what could happen after the death, but someone they really trust who they can have a conversation because you can't put in a document all the variables. but what are the principles? what kinds of things would i want, would i not want because one size does not fit all. and one of the basic decision making tools is to look at an individual treatment in terms of its benefit to burden. what you're proposing, susan, is very painful. dentzer: you all keep accusing me of proposing these things. i'm trying to get you to discuss them. hilliard: the scenario you're proposing is very painful and it is, it might be unlikely that
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when this woman was competent that she went through all the permutations of what could happen. so a general framework with someone one trusts about what one would want to engage in in terms of benefit to burden. never in terms of their human dignity. we never lose dignity as human beings. never in terms of this artificial quality of life which is imposed by others. but if a treatment is going to be more burdensome than beneficial, then it can be refused very much so. but it should be done autonomously or by a surrogate who has got the mind of the patient and the best interest of the patient. dentzer: some people have said we should dispense with the word rationing and just start to talk about rational care. do you think we could ever agree as a society on what rational care is? art? connor: it would be nice to try. caplan: well, i would hope so. i mean some of the themes that we're circulating tonight are ok, then let's take a look at what works.
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let's understand rationally how to handle decision making authority if you're not competent. can we set up an understanding that we don't want meddling in direct bedside care, that the beneficence of the doctor should be the ethic that we want to see? but we don't have much evidence right now about what works and what goes on in health care. i would venture to say we don't even know what prices are. we don't know what we're paying for most of the time. anybody who's looked at a hospital bill has been through an experiment in some kind of astrology. there's no decoding it. no one knows what's going on. so could we get more rational than we are now? that would be very easy to achieve. would that spare us rationing? i don't know. i don't think so, but i think it would help guide, again, the decisions that we're going to have, the tougher decisions that are looming out there. dentzer: ira, you were perking up there.
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byock: well, we're just not rational at all as a society, as a culture. avoidance of death is pervasive in our society. "i don't want to think about it" really captures the american approach to dying and denial of death doesn't get easier as people get sicker, sometimes it gets more entrenched. you know, superstition is alive and well in america today. we don't even want to talk about it as if, "oh, don't talk about that, dad," as if talking about it will make it happen. so we have to get over it. we're mortal. we're going to die. let's get over it and start talking about how we can make the best use of the resources that we have available to them, to us including the best medical care possible. but we ought to do that as a moral society with the stakeholders, the governmental stakeholders or the ethicists, the marketplace, the pharmaceutical companies. durable medical equipment companies need to be part of this, not free agents. you know, and their investors and their stakeholders can't just be looking at the bottom line in terms of finances. there's a moral ethical bottom line that they have to join us in as a society in deciding what makes sense.
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but we need to do that with the full acknowledgement that we're mortal, and we need to make the best use of our resources for the time that we are given this gift of life. dentzer: one approach that many people think could be one that would make medicine more rational is comparative effectiveness research. now ken connor, when this discussion came up in the congress about comparative effectiveness research, people pronounced it those would be the death panels, those would be the ones that would decide what you can get and what you can't get. connor: it shows you how little people trust their government. they don't want government bureaucrats making these decisions. you asked the question about rational care. i think that makes a lot of sense. the kinds of questions we ought to be asking i think is, is the procedure within the generally accepted standard of care? is it necessary for the patient? is it clinically appropriate?
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is the cost reasonable compared to similar services? these are the kinds of questions i think we ought to be asking. but we shouldn't relegate to the faceless bureaucrats the discretion to decide who lives and who dies, who gets treatment and who doesn't based on things like quality adjusted life years or quality of life calculus or functional capacity studies. old folks with dementia don't score well using quality of life calculus. people who are disabled don't score well using functional capacity studies. but their dignity is not diminished and their life is not worth any less than any other person. and we shouldn't have some bureaucrat in washington deciding they don't have a life worth living, end of story, no more care. dentzer: so there seem to be pretty broad agreement that we don't want bureaucrats making these decisions but government has to have some role,
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doesn't it, ira? what should government's role be in this? byock: well, i do think government can convene a process. you know, the president's commission on bioethics helped a lot in the early '90s. you know, government can be a convener and provide some standards. it was ken said, i think very appropriately, that there are standards of health care that we all ought to abide by and that should not be an individual physician's discretion. we all act within professional standards and that's an important part of the infrastructure of good health care. dentzer: art, what do think the role of government should be? caplan: i think what government really should do, beyond sort of playing with the coverage benefits thing, is supply the forums for getting data. we don't have information on what works. we're blind when we operate around end-of-life care as to what's really going to succeed. pharmaceutical companies, device manufacturers, business interests push the newest and the latest.
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they say, "it's so new we don't understand how it works. nobody does, but you can only get it here." that kind of attitude isn't going to help us be prudent, wise and just in terms of resource allocation. so i agree with ira. convene the forums. dentzer: that sounds pretty non-threatening. and we probably could agree about a forum in which people could reach these decisions. we don't want the government bureaucrats doing that but a broader construct with priests and rabbis and individuals who are affected. all of those folks could probably come up with a rational way to frame these decisions. art? caplan: i think in a system where we don't why it costs what it does, we don't know whether it works and we don't know what good quality is, we could make some improvement toward more rational care. but that said, just a comment about what really happens in dying and my colleague, ira, knows this better. but i'll say i hear many people say i must accept
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every treatment because i don't want my family to think i'm a coward. i hear people say we must do everything for mom, even if she's demented and 89 and wouldn't want to be in that state because i feel guilty that i never visited until she got too sick to recognize me. there are a lot of things going on around how we die and being mortal where the technology and the medicine substitute for spiritual doubt, for psychological, family, emotional frictions and the need to pull together. i think our culture is using too many ventilators and too many feeding tubes to repair other problems. religion has let us down. the place where many people turn when they want to talk about dying and answering questions about their character, their virtue, what will happen, how should they depict themselves,
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what do they owe one another, is to religion. and time and again i find people who come to our hospitals who say, "i'm not well educated at this. they haven't prepared me at the seminary. i never had a course in death and dying. i haven't had a bioethics course." whatever it might be, although they should come to penn, but whatever it might be. i don't think we're getting the kind of spiritual support, despite being a very religious country, around dying that, and i don't mean to impugn every hospital chaplain with this, but in general we could do better. i think we can do better if we start to introduce, as ira was saying, the notion of mortality might be ok to talk about in high school, wouldn't necessarily get a big listening audience, but at least you could start softening up people to the idea, you know, karen ann quinlan was 22 and terri schiavo was 24 and nancy cruzan was 23. and these are not issues that just are for your grandparents. they're for different people and you're going to
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want to talk about how to manage that so make it part of the education system, i think, is important. and then i think the media could do better. you know where is the best place to get resuscitated in america? it's on television. about 90 percent of people walk out of the hospital post cardiac arrest and respiratory arrest. an observed arrest in hospital has a success rate of about eight percent. an unobserved arrest has a success rate of about five. you get a lot of hope and craziness coming out of sort of movies and, you know, some of it's entertainment. i know that "repo man" is not trying to be. dentzer: people love those paddles. caplan: they love the paddles, and "repo man" is not really an, you know, a movie about organ transplant. it's a little entertainment for those of you looking for the latest nutty medical movie. but we could do better. dentzer: well, we now have two minutes for a closing statement from one member of each team. marie, you have two minutes. hilliard: all right, susan.
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i'll start again with hippocrates and those sacrosanct principles of autonomy, consent, beneficence and justice. and rationing violates these principles. it leads to labeling of persons in categories based on perhaps the quality adjusted life year that we see in england, where a person in a wheelchair automatically is determined to have 25 percent of a quality of life. and therefore, the allocation of resources for their health care is diminished as such. if we look here in the united states in terms of our actual spending, and we talked about how much the elderly consume, if we look at the percentage of elderly in our country right now and the percentage of federal dollars that are allocated the elderly, it's almost identical almost to the decimal point. so we are doing some things that are quite good. but we need to look at the broader picture. this is a society where we shouldn't have to make choices in terms of the elderly or the young.
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it's a bigger problem than that. we can fix things through looking more at how can we acquisition things, not how can we diminish allocation. and one thing we haven't talked about, which is really hurting medicare and social security is the birth rate in this country, the bigger picture. in the last 50 years, the birth rate in this country has plummeted more than 40 percent. it's the percentage of the elderly that's the problem, and we have to look again as a society at the bigger picture. we can do that. and education also is key, programs where health care providers learn to have those discussions with family members. family members have discussions so they can assuage guilt, know that there are times when benefit to burden needs to be looked at because this is actually detrimental to their loved one, so that they're not relinquishing to government decisions about their quality of life and their dignity which they never lose.
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dentzer: thank you. and now the last word for the side in favor of the resolution, that goes to you, ira byock. byock: as a physician, caring for individual patients, i really wish we didn't have to have limited resources. i wish we could do everything for everybody. as a citizen, i realize however that resources are limited and must be allocated fairly, justly and wisely. these are hard subjects. understandably, this is a wrenching decision and wrenching topic for people to discuss individually and collectively. when someone you love becomes severely injured or ill, perhaps your mother, father, sister, brother, even a child, the idea that he or she might die is the worst thing one can imagine. but i know from my years of practice that there are worse things than having someone you love die. most basically, it's having someone you love die badly, suffering as they die, feeling undignified, feeling a burden to their families.
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perhaps the only worse thing is realizing later that the suffering was largely unnecessary. despite what our friend sanjay gupta has written about medical miracles, people remain mortal. and upholding the value of life, we must acknowledge that extending life cannot be our only value. as individuals making decisions for our own care or the care of someone in our family, there may come a time when more treatment is not better. and we have to talk about that individually and collectively. that's not philosophy, it's just biology. sometimes treatment actually shortens peoples' lives and not uncommonly, the things that are, we're told that people should say yes to, like artificial nutrition and hydration, can actually shorten their life and make the last days of their life miserable. so i do think that we need to come and continue this conversation as influential voices in a moral society and through a transparent process that
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is broad-based, wide representation. come together to talk about how we can make moral use of limited resources. and to do so wisely, to provide care that's the best care possible but also that is tender and loving, allowing people to die well. dentzer: well, that will have to conclude our debate. our debaters have given us a good deal to think about. thanks to all of you for a really provocative discussion. for more information about this debate and future debates, please go to the miller center web site. and for our broadcasts check the listings of your local public television stations. on behalf of the miller center, i'm susan dentzer, thanks for watching.
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narrator: for transcripts, lesson plans and issue papers for this debate and others in the series, log on to this program was made possible by the generous support
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of frederick w. scott, jr., ann r. worrell and the lumina foundation. the economy has changed. workforce needs have changed. and in the 21st century, skills must change. higher education is a key to solving these challenges. lumina foundation for education is committed to graduating more students from college because education beyond high school is the best investment we can make in the future. and additional support from engaged citizen donors to the miller center foundation from across the nation.
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