Handbook For Mortals, Part II
VTR Date: March 9, 1999
Dr. Joanne Lynn discusses her book for dying patients.
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GUEST: Joanne Lynn, M.D.
I’m Richard Heffner, your host on The Open Mind. And this is the second of two programs based on the assumption that “modern medical technology has changed not only the way we live, but also the way we die. Until two generations ago, people usually died suddenly, after an accident or serious illness. Now, most of us may expect our dying to take longer, to require more care, and to demand more forethought than ever before”.
So, once again, my guest is geriatrician Dr. Joanne Lynn, Director of the Center to Improve Care of the Dying at George Washington University Medical Center.
Oxford University Press has just published Dr. Lynn’s Handbook For Mortals: Guidance For People Facing Serious Illness, written with Dr. Joan Harrold. Again, it will provide the basis for much of our discussion today, and you know, I’d like to continue by asking you something that has to inform your book and that is the work you did on the project called “Support”. What was “Support”?
LYNN: It’s a wonderful acronym for the “Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment”. And we studied almost 10,000 patients who were in one of five hospitals all around the country and learned a great deal from interviewing them, their families and their doctors. And following them for six months and seeing how decisions got made, how they died, what they understood … gathered a lot of information. It’s been quite an important set of work because people just hadn’t asked these questions before.
HEFFNER: And you had a, a series of things you wanted accomplished, didn’t you?
LYNN: Yeah, well we thought that we would learn how to improve decision-making. We thought we would learn how to have people carry on better conversations, make decisions a little earlier in the course of illness. We were not successful at doing that. And we learned a great deal from not succeeding at, at that. But along the way we also learned a lot about prognostication, how accurate doctors and statistical models can be. We learned a lot …, which is not very accurate … we learned a lot about how patients’ families and doctors don’t see the world in the same way. And the doctors can actually be pretty accurate about something like prognosis, or what the patient’s experience is. But patients stay very much more optimistic till very late. And, even though patients know that “well, patients like me … there’s a fifty-fifty chance to live two months”. They all think they’re in the right fifty. [Laughter] They don’t have a sense of themselves being among the statistics, they’re some how outside of the statistics. We’re still learning a lot from this … we have probably on the order of three or four dozen more articles to pull from that one study. So, we’re still learning.
HEFFNER: But what I didn’t understand though was the point at which you say we weren’t successful.
LYNN: We weren’t successful in changing how decisions got made. So, in the population we were looking at, which were all people who were identified because they were in the hospital and very sick, it turned out that the decisions, for example, not to try resuscitation … ordinarily did get made, but they got made in the last few days of life. Essentially while the person was dwindling and visibly dying. They weren’t made a week or two earlier. Therefore usually they didn’t involve the patient any more, because the patient was too sick to be involved … maybe comatose or delirious or just asleep, or whatever, but they were no longer making their own decisions, the family was making decisions.
HEFFNER: But …
LYNN: We thought we could move that decision making a few days earlier so the patients could be involved and so it could be done in a sense, more thoughtfully. And we didn’t, we were not successful in doing that.
HEFFNER: But I … I gather that you felt that the decisions that were made were the right decisions …
LYNN: Well very few people …
HEFFNER: Appropriate decisions.
LYNN: … very few people this sick are well served by having a try at resuscitation at the end. In a sense everything’s being tried, and if it’s … if their heart stops despite all that, you almost never succeed in getting them back out of the hospital. They’re never going to make it. So, yeah, the decision to stop resuscitation is correct. But it seems unfortunate that in so many cases it was done in the last day or two, thereby leaving a person at risk of an erroneous, in a sense, resuscitation earlier, just because no one had dealt with it. And denying the person the opportunity to be in command of their own ship at the end. To say, “yes, I recognize I’m dying and there’s something I’ve really been meaning to tell you” … to their son or the chance to say some last prayers, or whatever. But to realize that they are now up against it.
HEFFNER: But we could make those decisions for ourselves, couldn’t we?
LYNN: We could.
HEFFNER: And we don’t choose to … generally.
LYNN: Yeah. Although there’s now one really illuminating example of a community that’s done it somewhat differently. In LaCrosse, Wisconsin all of the medical care providers agreed to work together with the community on trying to get advanced care planning done with patients who are very sick or very old. And they actually manage now to have 85% of the people who die in their area … have a written down plan as to what they want to have happen at the end of life. 85%. And most of them are written more than a year ahead of the death. So this is real planning. It, it illuminates where we could get to if many parties, the churches, the community groups, the news media, the doctors, the nurses, everybody said, “You know it is important that people get a chance to shape what’s going to happen to them”.
HEFFNER: Dr. Lynn I know it seems … I know from the way you talk now, that it must seem strange to you for me to ask why is this important?
LYNN: Well, as I was saying in the earlier show, I guess, the … we have a lot to learn and we don’t know yet what our community is going to settle on as our understanding. My sense is that we won’t walk out on human meaningfulness, that we will realize just how valuable that last piece of time can be. I’ve taken care of a few thousand people who’ve died. I work with people who’ve taken care of thousands … we had sixty people working on this book … thousands of people. And over and over again you see people who initially push it aside, don’t want to deal with it, and then when they really have to deal with it, incredible humanity comes forward. Things that are so valuable that it would have been a shame to have walked out on them. The need to have reconciliation in a family. The need to go back and re-ask those questions you pushed aside at 16 or 17 about the nature of human existence and the meaning of a life. And to go back and re-think that a little. To give some advice to the great-grandchildren … remember, the age at which people are now dying, they usually have great grandchildren, but to leave some advice. Many traditions are turning to what in the Jewish tradition was called a … well, with regard to your, with regard to your meaning … you see you write down things to be left for future generations. I think we’re re-discovering a number of things that are very important about what it is to be a person. You know we don’t really like that image of … the George Orwell novel where the people who lived above ground just sort of vanished when they started getting a little sick. I think we’re going to find some ways to make either religious or secular meaning from the experience of living with declining health.
HEFFNER: You in a sense … tell me … stop me if I’m wrong … you’re making demands upon us that we die and live, perhaps in that order, in a better way. Because when I asked you whether the right decisions were made about “do not resuscitate” or whatever … using extraordinary measures at the end … you say “yes”. But you want us to have participated in them. You wanted the people in that study to have participated, and it shouldn’t have been a matter of happenstance. You’re making demands upon us aren’t you? And I’m not saying you shouldn’t. But it is a philosophical …
LYNN: Remember I’m saying that we need a period of time in which to innovate and try things out. I have been with enough dying people to be pretty confident that almost everybody does end up finding a reason to live well at the end of life. They don’t think they will when they first realize they’ve got a bad disease. They think that it’s all over, they think they should “make it end’, you know stop things and so on. But they do end up in … humans are marvelously creative and also, it isn’t that I make demands of our community. It’s this is our biology now, we’re going to live this way. We can choose to live well, or we can choose to walk out on it and let people be warehoused and ignored and, you know, no one to hold their hand or hear their story or anything. And I think we’re going to choose something a little better than that. I don’t know that’s the case. I mean we might find enormous stores in us of the ability to be cold and callous and ignore our parents, but I don’t think so. I mean I think as we … as we start … maybe it’s rather like the natural childbirth movement. Where for decades obstetricians thought that how to serve women well was to have them be unconscious at the time of birth [laughter], and meet the baby some hours later. And that that was a good thing to do. And along came a different orientation that said, “No, you know, families are born at the time of that birth”. And it’s important for the mother to be present and the father to be present if possible. And, and to have a chance to, in a sense, re-define, yourself almost in the moment. And we have built a care system that has learned to support a very different vision of what childbirth is about. Maybe in much the same way we’re searching for how to put together the end of life in a way that does honor to the whole life.
HEFFNER: Do …
LYNN: And I don’t know if we’re going to do it, we might walk out on it.
HEFFNER: Do you think that your techniques for bringing about a better end to life are a function of a less highly populated civilization. You talk about a community … was it LaCrosse … in which the medical profession had an objective, and achieved it.
LYNN: Well, with the community.
HEFFNER: In a very small community. And I wonder whether you’re not spitting against the wind here in terms of population. The thought crossed my mind as we spoke in the last program. Is this an upper middle class conceit? Is this something, an objective that can be obtained, achieved by a certain kind of population, rather than by the numbers and numbers and numbers that confront us now.
LYNN: We should be very concerned about that … I’m not sure. It certainly is the case that people who, as a community, are facing starvation or abject poverty … real problems for children are not going to see the problems of the declining years as a high priority. On the other hand, we’ve already, as a society in these United States, we’ve already said that we’re taking care of the old. We’ve already put our money there. We may as well get good value for it. Why do we build a care system that can deliver, on the spot, right away, all money paid, a heart surgery. But we can’t deliver an in-home-health aide? How is it that we can manage to serve up high-tech medical diagnostics … you can get a CAT scan for a bad headache. But don’t need Meals on Wheels on Sunday … we don’t know how to do that. And we have our priorities sort of all fouled up. You know, one of the most important things for the very sick is continuity … their doctor, their nurse, their home care provider … stay with them through to the end. And yet we build a care system in which discontinuity is much better paid. We need to have the incentives … financial incentives … the regulatory apparatus lined up behind what people really need. Now is that only a middle class issue? No. An awful lot of poor people make it to the age where they could benefit from these things.
HEFFNER: Oh, I didn’t mean an issue … I meant a solution.
LYNN: Yeah. See, I don’ t have one vision of how of everybody should die. And people can turn their backs on, on making a meaningful existence and people can, you know, make all manner of different choices. I’m just saying that we should have the chance to live well. That the usual care system should support living well right up to the time of death. And then if somebody says, “Look, it’s fine for you, but not for me. Me, you know, I’m stopping my insulin, I’m checking out early. I can try to talk them into it, but I can’t in fact tie them down and make them take their insulin. People have all kinds of ways out of this life. But we ought to as a community make it possible to live reasonably well, reasonably satisfying lives, despite bad disability. That’s our challenge.
HEFFNER: Okay, I’m going to be the bad one again. And I’m going to ask you whether we have the resources to do so.
LYNN: I think we’re already paying for it. We’re already paying for more than enough to do a good job …
HEFFNER: You mean the heroic measures are so expensive.
LYNN: Well, the heroic measures, the discontinuity, the chaos, the lack of planning … you know … right now Medicare will pay for an implantable defibrillator in almost anyone’s heart that shows an arrhythmia. Those doggone things end up costing on the order of $50,000 each year for the first two years. That’s enormously expensive. Why don’t we learn to say, “Well, wait a minute [laughter], not everybody is well served by that. If we are willing to spend $50,000 surely there are a lot of people who would be more well served by having in-home health aides for three hours a day, seven days a week. Or having Meal on Wheels on a Sunday. Or getting their drugs paid for. But we don’t sort of put everything that a person would need to live well into … on one table and say, “okay, now how are we going to figure out what to afford”. Instead we have these ways of assuring that certain things get paid for … surgeries, devices, diagnostics, and so forth. And other things we’ve learned to keep our blinders on, we don’t notice that we aren’t paying for those … in-home health aides, drugs, continuity … you know, you can be very rich and you can’t get a good way out of, you know, at the end of life. It isn’t a matter of just being able to buy it … it’s that the system just doesn’t know how to deliver it up. You can’t, you can’t with all the money in the world say, “well, I want a doctor who knows … I want to be in the system in which the usual doctor knows how to work in a nursing home, the nursing home’s good, knows how to work in home care, and the home care’s good; knows how to make sure that the drugs I need are available anywhere that I am … the hospital, the home, the nursing home … you can’t make that happen for one person. It has to happen for everybody or it happens for nobody.
HEFFNER: What do you think is going to happen? For one person or for no one?
LYNN: I think we’re going to do it for everybody. We’re not going to do it perfectly, but we’re going to get there. It’s just too many people. We can’t have … 20% of the population’s going to be over 65 within just ten or 15 years. We’re going to have huge numbers of people all coming to the end of life together. You know, we aren’t going … really be willing to walk out on our parents.
HEFFNER: Suppose that ogre on the other side of the table from you then says … but all the more reason to assume that we’re not going to do it. There are going to be so many demands …
LYNN: Well, we’d need some real creativity. It’s almost like a Manhattan Project.
LYNN: I mean, we need as a society to say “this is a real priority” … everybody who’s going to be 85 in ten years is right now 75. You know, it’s not a surprise. We know, we know who’s there. We could be getting ready for that. We could be learning how to arrange services, we could really have a period of robust innovation, lots of evaluation, expecting the Medicare program to be sponsoring lots of demonstration projects. But we could hold them to the fire on holding down costs. You know if we’re talking about serving such huge numbers of people, we can’t build high-end service. We have to build a service that really can be delivered for everybody.
HEFFNER: In the meantime it occurs to me, when I read your new book, Handbook For Mortals, more importantly it’s subtitled “Guidance for People Facing Serious Illness”, or who are close to people who are. It seems to me to be so important that many of the things that you write here, the guidance that you offer be widespread. I noted … I couldn’t help but realize how important it was. You write here “Words To Try” for families talking with a sick person. And you write: “when you think you want to say, ‘Dad you are going to be just fine’, try this instead, ‘Dad are there some things that worry you?’, or you think you want to say, ‘Don’t talk like that, you can beat this’, what you really ought to be saying, ‘It must be hard to come to terms with all of this’. It occurs to me, it occurred to me as I read your book that if these pages could be plastered around the world, around our country, we’d be so much better off. And I despair of finding the wisdom that you offer here on just about every page, offered widespread.
LYNN: Oh, I think we can do that. In 1978 and ‘79, when I first started working in hospice, the usual patient came through the door never having received any opioid drugs for pain. They no longer were bothering to cry out, they were in such pain. Now you never see that. There aren’t cancer patients who don’t get at least a first round try at pain relief. We’ve learned so much. Now can we learn it at a reasonable pace, that, you know, you or I could be confident that it will be in place by the time we need it. I don’t know. But we’re certain to get farther along than we have now. The only … there are a number of real risks. One is that we will learn to turn our backs on large numbers of people; that we will relearn … you know, sort of unlearn what we learned with Medicare and say, “No, no, we’re going to just worry about letting the rich take care of themselves and we’re going to learn to turn our ears so we don’t hear the cries of the poor”. If we can just keep this, really, as a community endeavor, you know, the one core lesson in the Medicare endeavor was that we all agreed we were all going to look after the old. And, if we can stay with that, we’ll learn to do it so much better. And we will learn how to do it less expensively. When you talk about community, you’re mentioning LaCrosse and how it’s a small city and maybe everybody gets along together. I work in Washington, DC. We’ve put together some of the most extraordinary communities, among people who didn’t even know each other before. I remember one night, putting up in elevators, in a, well, one of those big high rise apartment building … “There’s someone in your building who wants to stay home while she dies. But she no longer knows anybody here. What we need is some people who will volunteer to come by and check on her. And if we can find eight or ten people, she can manage to stay at home”. There were dozens of people volunteering. They formed an instant community. Many of them didn’t know each other, probably did a good thing for that apartment building for a long time. I think churches may find a new definition. Synagogues, community groups. You know, we may learn to support careers in this work in a way we don’t now.
HEFFNER: What do you mean?
LYNN: Well, ten years ago, 20 years ago, when I first started working in nursing homes, people would say, “why are you going to work in a nursing home, you’re a good doctor”. As if no good doctor would work in a nursing home. No longer do people quite say it with that edge to it … they recognize that there are some, you know, good doctors in nursing homes. But they … if they hit me with that, imagine what they hit an Aide with who’s making the same salary she would make at McDonalds. If your community says to you that that kind of work is worthless, then the very best people don’t stay with it. We need career ladders for people who do hands on service to people. We need ways of providing health insurance for people who are going to spend their lives taking care of other peoples’ illnesses. There are a thousand adjustments that we need to make in order to be able to confidently come to the end of life feeling sure that our community is going to do okay by us.
HEFFNER: And …
LYNN: They aren’t costly … they’re a matter of reorienting our thinking. It’s like we’ve been looking at the world this way, and now we’re going to shift our perspective and look at it a somewhat different way and say, “Oh, there are opportunities here”. Yeah, there’s something really good to come from this. And if we can manage to make that turn, to recognize this is a political issue, it’s a public health issue. It’s not basically a rights issue, it’s not really something mainly to be litigated in the courts, whether I have the right to do X, Y or Z. It’s a matter of whether we, as a community, are going to help one another in the time when we routinely have tremendous needs.
HEFFNER: It’s an attitude issue. And the question I want to ask, and get you to answer in the few minutes remaining … what, what informs that optimism, and it is optimism in you? What …
LYNN: Just learning from my patients. I didn’t know anything about how people died until I worked with all these people. And in the worst of conditions, in incredibly impoverished immigrant families or people who’ve lived on the streets all their lives … there’s still such a spark of humanity. And over and over again you’re just struck with how wonderful this human existence is. And if people just allowed themselves some experience of that. We would want that to happen in our lives, and in the lives of our spouses and our parents, and our children. And we’d be willing to make the little bit of adjustment it takes to move from where we are now to a much better array of services and attitudes, movies. You know a culture that can support the fact that most of us are going to die old, of a disease that kills us slow. And that’s built into our physiology. I mean that’s a given. It’s how we’re going to live with it. And I think we can get there. The alternative is so grim, we don’t want the system we’ve got now. We don’t want to just refinance Medicare to exactly what it does today. We want it to do much better stuff. We want to be able to grow old confident that our care system’s going to be there for us, that symptoms are never going to be overwhelming, that we have a chance to plan ahead and know what’s coming at us, to make what happens to us fit, what it is that really matters to us. We want our families to be considered. We want every day to count, we want to really make something of that limited time we’ve got here. You know we’re going to be dead a long time.
HEFFNER: You really feel that you could say to a young person, “this is the way it can be, this is the way it’s going to be”.
LYNN: I actually go one further, when I talk to medical students or nursing students, I’ll say, “I can’t tell you how good it can be”. I can tell you that I can’t show you today where we ought to be in ten years. We ought to be dedicated to a pace of change that is such that today’s best practices should be routine or less than good practices within ten or 15 years. We need a pace of change that’s just truly driven because we have so many people growing old together who all got born after World War II that we have to be in a better position to take care of them before they need it. So this is the time … we have a little gap here in which we really can innovate and learn, learn new things. How can we manage to make a promise to a person who has just has their first round of a serious illness, say with heart disease, and say you need to understand that we know how to take care of the physical parts of this illness. And we know how to let you live as best you can in the time you have left. And here’s what we know how to do. And we’re here for you, you can lose us, you won’t lose us in the care system. And it’s affordable. We need to do a lot of work to get there. But we can get there. If we don’t, I mean the kinds of things we’re handing out now are just so miserable. How many people have horrible stories. Even people who have a good story tell me, but my family was lucky. Lucky!?! We ought to demand good care. We don’t say that we were lucky that we got through even a heart surgery, with it being technically done correctly.
HEFFNER: Dr. Lynn, I have the … I have the solution. It’s replication. We’re going to replicate you … we’re going to duplicate you, we’re going duplicate that optimism and that scientific skill. And I want to thank you because one way of doing that is for everyone to read Handbook For Mortals”. Dr. Joanne Lynn, thank you so much for joining me today.
LYNN: Thank you very much for having me here.
HEFFNER: And thanks, too, to you in the audience. I hope you join us again next time. If you would like a transcript of today’s program, please send four dollars in check or money order to: The Open Mind, P. O. Box 7977, F.D.R. Station, New York, New York 10150
Meanwhile, as an old friend used to say, “Good night and good luck.”
N.B. Every effort has been made to ensure the accuracy of this transcript. It may not, however, be a verbatim copy of the program.