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October 1, 2009
Our speaker for today is Myra Christopher. Her lifelong mission is to improve the care for people with illnesses and to help with their families. Myra is president and CEO of the Center for Practical Bioethics. It is a national organization with its headquarters here in Kansas City. In addition to her work with the Center, Myra works with many boards and advisory boards between the Duke Institute, and ____ upstate , the National Associations of Attorneys’ General and the ABA Commission on law and aging. Mrs. Christopher has been honored by many leading local universities including KU, UMKC, Rockhurst and William Jewell. Myra Christopher has received many distinguished awards including the _____ award for outstanding … to improve palliative and end of life care for African-Americans. She had received the president’s award of the National Association of Attorneys’ General and later this month she will receive the distinguished heart/head award of the American Academy of Pain Management. Because of her involvement in the Nancy Cruzan right to die case, she has assisted Senator Danforth in drafting the Patient Self-Determination Act. Mrs. Christopher is currently a consultant with the Center for Disease Control . Myra Christopher and her husband ______ live in Fairway (KS) with Olive a rambunctious black lab who is losig her puppy teeth ad developing a full set of canine dentures. The Christopher’s have two adult daughters and the love of their life, George is their 12 year old grandso. Ladies and gentlemen, our speaker for today, Myra Christopher. 21:25 - Thank you ____. I think you took my notes (laughter). Olive is our first dog…proceeds to talk about dog... 22:55 - I’m delighted to be with you here this afternoon…I’ve lots of information about the Center for Practical Bioethics. I think when we spoke last we were the Midwest Bioethics Center, but when we celebrated our 20th anniversary we changed our name to the Center for Practical Bioethics because we had attained national recognition …and this year actually we celebrated our 25th year anniversary …It’s been a wonderful journey… If you'd be interested in knowing more about our organization, I'd be delighted to talk with you about that…. 24:16 – I agreed when I got the call from your program chairman to talk to you about health care reform - - and about a narrow niche of health care reform, and that is about the ‘kill granny’ pieces in health care legislation. The end of last year when after President Obama had been elected we talked a lot among our board and our leadership team at the center whether or not we ought to get engaged in health care reform. 25:00 - I made a decision that we should. We had been involved in health care reform in the past, at both the state and the national level. In fact the button I have on today which is about health care reform is 20 years old – I wear it every day whether there is anything going on or not. But, we made the decision that in fact we should let it be known that if it would be helpful that we would be glad to be of assistance, to provide technical assistance and knowledge to those on both sides of the aisle working on health care reform in this way—around end of life care, and the center, as Don indicated my personal mission and much of the center’s work is about improving care of the seriously ill and dying and the experience of your family. I don't really have to give you the –data because many of you have had these experiences personally – but end of life in this country is not a pretty picture – people die alone, in hospitals for the most part, isolated in intensive care units for long periods of time – on average for 14 days. Many are unconscious. Of those who are conscious, the majority are in moderate to severe pain and unable to get medication for their pain - although we can manage pain, we just don’t and their wishes are often ignored. In the midst of doing this support, families are bankrupted. 26:17 : You have heard frequently in the last few months that the major cause of bankruptcy in this country is medical indebtedness – and that’s true for people who have insurance as well as for those who don’t have insurance. Our focus is on improving access and quality. The reality is that 9 to 11% of the entire health care budget is spent on end of life care--nearly 27 to 30% depending on whose data you want to believe of the Medicare budget is spent on end of life care. Conservatively, conservatively, $6.1 Billion dollars every year of Medicare is wasted on what we refer to as futile care, care that everyone knows has no chance of having any positive effect. And about $4 billion dollars is spent in private dollars, and so $10 billion dollars is spent on futile care. And so we thought that people might actually be interested - and in fact they were. And we've had opportunities to speak to people on both sides of the aisle and with Senator Danforth’s assistance , and we’ve also had access to HHS and to the health care reform office. 27:41 We had a pretty good start and last summer we thought we were really on a roll – We'd been working for about a year – prior to Obama's election, actually under the Bush Adm. – It should be obvious but I will say that the center of practical bioethics is not a political or partisan organization. We work on these issues, it doesn’t matter to us who is in the White House. Under the Bush administration we had been asked to work with the Rand Institute on a report for Congress on advance care planning, and we had worked hard on that and got it completed under the Bush administration and it actually didn’t go to Congress until Secretary Sebelius was in office, and it went to Congress late June. We felt really good about that. I We thought it was very timely and could perhaps be very helpful. We also were very pleased. We worked on these issues locally and regionally and nationally. We were very pleased that that very same week, Tom Bowser--some of you may know is the CEO of Blue Cross/Blue Shield here, but also currently is chair of the federation of the Blues, and is also very involved in the reform conversation-- commented in the Kansas City Star that when you look at data have collected and is now reported in the document atlas which gets a lot of data it was noted that -- end of life costs of care in Kansas City are significantly less than comparable cities around the country. When asked about that Bowser said that it was because of the work of the Center for Practical Bioethics. And we were very grateful to him for him acknowledging that. In July project we had been working on with the Centers for Disease Control—Don alluded to that—and that we’ve been working on for several years that we could kind of get the attention of directors of departments of public health and directors of departments on aging studies to acknowledge that this is really a public health issue. You know the data here is really absolutely compelling. One out of one of all populations will die (laughter) – there is no question about this. So we do believe that this is a public health issue and all ought to be interested in it. In July then, the Institute of Medicine convened about two dozen people and said ‘you kow what--we gotta have a new model for this--the current model just is not working,’ and the Center was asked to be part of that. 30:24 - So we were really feeling like our time had come. We had been working on these matters for 25 years. My husband said geez, you might have made some difference –you know surprise, surprise. And then Congress took a recess and all of the sudden we have all of this ‘kill granny’ talk and the death squad talk. Now, I want to concede that there are 3 groups of people who have at the town hall meetings and have been on talk shows about whom we need to be concerned. One is people who are generally confused about the legislation. And the legislation was written and it was not very clear. And we have attempted with Nancy and Carl’s invitation and Mike Casher, deputy director to try to offer some clear language- we need to make it not so confusing. Those are legitimate concerns. There are people who genuinely are concerned – they are worried about this end of life stuff and we need to engage in conversation with people about that. And the third group are political opportunists and fear mongers – and I think that they just need to be called what they are (clapping) and that we need to (inaudible) The Center is very proud of our record of being a convener, of bringing people together who don't usually work together. We are not in the business of pointing fingers at one another. There is enough blame and trouble around these issues that all of us have a share of that. The people who have on one day spoken in favor of advanced care planning and on the next day and on the next day said it's just a way to get rid of old people. They ought to be ashamed of themselves. I have on occasion actually called names and pointed fingers about that. Now, at this point, we don't really know what damage has been done. I suspect because looking around this room that this is predominantly a well educated older group of people. You are also upper income, upper middle income or upper income . I know that about you. That the majority of you have probably already made a living will document or your have probably already named a durable power of attorney for health care in the event you have not the capacity to make your own decisions at the end of life. 33:00 - The data is that 85% of us, no matter where we are, what religion we are, how much money we have –85% will not make our own decisions about end of life. - - somebody else will make those decisions for us. Yet even post-Schivo, that tragic, tragic case which all of us saw played out in front of the media - - only 28% of us have actually made an advanced directive. So there is a huge gap between what we say we think we ought to do and what most of us do. 33:54 - Now we don't know what kind of damage has been done – we have gotten calls at the center from people who say, you know, I’m going to destroy my advance directive. And we have said to people ‘Would you please, please not do that.’ We are going to continue this work no matter what happens in the legislative process. But let me tell you what is happening in the legislative process. 34:20 - Both at the time that this silly conversation went on already (inaudible) we had HR3200. It was very comprehensive and thoughtful legislation about providing some incentives to get physicians to talk with their patients about advanced care planning. There was no provision for bureaucrats to step in and talk to anybody. There’s no provision for bureaucrats to make decisions. There were no death squads, I mean that was just something somebody made up because it gave them some air time on television. HR 3200 was sometimes referred to as the tri-committee legislation because it was the synthesis of a bunch of different pieces of legislation that Warner and Rockefeller and Blumenauer and some others had worked on. And while this was going on the Senate got scared and so they pulled out everything about end of life care—out of the Senate legislation. 35:18 - Now as you know they are continuing to work on this senate stuff. And we don’t have a piece of legislation yet. There is no such thing, so when people are saying ‘we’ve gotta kill this bill’—whether they’re talking about the Obama plan or whatever, there is no such thing. 35:40 - Now what has to happen is, that as what you know, because we all took civics in high school if no where else, we have to have – we have to go through a process in which the House legislation, which does still have provisions about end of life care—about improving end of life care, and the senate which just now does not, although it may, by the time that that is put together and people are hashed it out and argued about it, there may or may not be anything in the reform bill. 36:12 – Although Senator Rockefeller who has worked on this legislation, not this year, but for the last four or five years, he has had legislation in place to promote advance care planning and to improve end of life care, his staff has said that he plans to, at the 11th hour, to step in and try to use his influence to put it back into the legislation as an amendment. 36: 40 -- Now whether it is there or not, to be really honest with you, I don't know that I care. We have worked on this stuff for 25 plus years and we will continue to work on this stuff. It will take 25 more years I fear to try to change the way we care for the seriously ill and dying in this country. We are committed to doing that. Whether this passes or not, I want to encourage you, if you have not had these conversations to talk with your family about what your preferences are. Because it is not going to be you making these decisions more than likely. It will be someone that you love standing at your bedside trying to figure out what it is you would want them to do. I believe this is something that responsible people do. If you want to know more about these issues, the center is hosting in October, next week, we will begin a 4 part series that will be held at Community Christian Church where we are going to try to provide some real expertise and in-depth analysis on the different kind of pillars of the reform process. It is again, not a political program. It's an effort to get people information and insight from a variety of perspectives so that they can make judgments for themselves– all people are welcome – There is information at your table about that. 38:06 - I would be glad to take questions if any of you would like to ask questions or I’d be delighted to hear your comments if any of you would like to do that. Yes Sir. (Question) What specifically if you were writing the bill what specifically would you put in about end of life care? (Answer) I do think there should be incentives to try to promote these conversations. The bill currently, the house bill, does provide incentives to physicians. We know that time is money for physicians. I actually would turn it around. I would provide the incentive to the consumer. I would say that if you have these conversations and you bring this information to your physician, and you give this information to your insurance company whether it’s Medicare or the Blues or whoever, you might get an insurance premium benefit or you might actually get a cash stipend for that because we know from the data—the research again going back to the report—we know that what really matters is that families have the conversations, and that then they share that with physicians. Also - - in the legislation, in a project which we are doing here in Kansas City, which is called POLST, which stands for Physicians Orders for Life Sustaining Treatnent, that when people are in nursing homes, they often get bounced back and forth and back and forth and back and forth between from hospital to nursing home and hospital and nursing home and it is horrible because more than 80% of the people who are in nursing homes have cognitive deficits. And when you think about this, you’re frail enough to be in a nursing home and already confused – and you fall or something happens – and the send you--they throw you in the back of an ambulance—I shouldn’t say throw you in the back of an ambulance—place you gently in the back of an ambulance—that shows a bias—place you gently in the back of an ambulance—take you into an Emergency Room where you’re not going to be first on the list—you know people who’ve got gun shots and serious life-threatening injuries will be first (laughter) – you sit there until they can see you – and very often what they will do is stabilize you and send you back to the nursing home. 40:29 POLST is an initiative that was started in Oregon and has proven to be very, very effective to protect frail, elderly people without cognitive function from that experience. I would love, love to see that nationalized. We are working on it here in Kansas City without the legislation. Again I don’t think you have to have a legislative remedy for everything, but it sure moves things forward more rapidly. So those are 2 things I'd love to see. 41:00 - There's been a lot of talk about should you require, and frankly we started the conversation but backed off on it: Should you require people when they enroll in Medicare to have named a durable power of attorney? I don’t that we should require people to do it, because Don mentioned that according to the American Bar Association on Aging, there is a growing number of people who we refer to as under-friended. I hate that nomenclature but they’ve outlived their family and they’ve outlived their social support system—they don’t have anybody to name. So I think again, we ought to strongly encourage them to maintain their durable power of atty but not require it, and I think that we can accomplish what we want to do without mandating it, but I wouldn’t want to limit it to just Medicare, but for all people who are insured and I hope that very soon all of us are going to be insured or 98% of us. (Question): Are you comfortable with the language in the House? (Answer) Am I comfortable with the language in the House? We’ve actually proposed an alternative language so I can live with it but I’d like to see it tightened up. (Question): Woman asks about timeline (Answer): Yeah, well the denominator problem is how we refer to your question. The question is what does it mean to be at the end of life. You know most of us now die of advanced and multiple chronic illnesses. And I think we have to recognize - I’ve been working on this stuff for about 30 years now. And when I started working on it people died of cancer, of heart attach of pneumonia – that's not how we die now. We don’t go along and get cancer. Cancer is now a chronic illness. That’s the good news. You get sick, and you’re sick for a little bit and you just die. People get sick and die of longer over long periods of time and multiple serious chronic episodes and so I think that we have to admit that. I mean that’s just a reality of the miracles of modern medicine. So I think end of life care has to be defined by advanced age and by diagnosis. I don’t think it’s as crisp as it used to be and I think we can do it. It’s not easy but we can do it. (Question) Regarded money—in the last 5 years of a persons life? (Hard to hear) (Answer): The date I gave you is in the last year . That’s the date of one year, but the majority of the expense is in the last two years of an individuals life because we’re ill for a long period of time generally. Did you have a question? 44:30 – (Question) (very long –hard to hear) Counseling would have benefitted me. Um, language is being attacked by health care opponents, word for word championed by health care…Medicare part B had a provision… (Answer): Oh, that’s true and the leopard has changed his spots. As I said, there are people who I will not name who have one day argued for this and on this day argued against exactly that. 46:05 (Question): (very long – hard to hear) As a physician I would share with you that because of these sensitive issues …many of my colleague physicians are inept, unable or , unwilling or unable to …describe, answer and …talk about end of life. We don’t do a very good job, i.e. Children’s hospital. Very, very difficult to talk about end of life for children. What we did is incentivized the hospital. I would propose that as an alternative. We had an ombudsman that was paid by the hospital to act independently to (inaudible)…to have somebody to communicate with the family, with the doctor …and I like that better because hospital…trained social worker, someone or nurse… (Answer): Your comment is well taken and physician’s—we’ve gotten into physician bashing I this country which I think is dreadful, inappropriate and unnecessary. Physicians are not trained about end of life care, or are they trained for pain management. We’ve got to go back and do some adjustment to the curricula that our physicians are being trained with. The legislation does actually provide for incentives for the physicians, nurse practitioners or physician assistants. So it would allow the physician to do this. We do know the consumer is much more likely to do it if physician says this is a important issue– and interestingly, even though all of the scuttlebutt made it sound like patient’s were so skeptical of physicians motives and incentives – that's just malarkey – patients actually think much higher of the physician when he or she says this is an important conversation –we should have this conversation. I think a manageable model is for the physician to say to the patient ‘we need to have this conversation because perhaps your ____ disease has advanced to stage 2 and it’s time for this conversation and you can see how busy I am and I’d rather devote my time to your care and what I’m gonna do is ask my nurse practicioner or my physician assistant is to schedule some time for you. And then we can accomplish all of it. I really do appreciate this opportunity to spend this time with you. These are important matters and it is one to one, so please take the time to do this. Thank you so much. 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