Handbook For Mortals, Part I
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 the other evening, as I was preparing for today’s program, I couldn’t help but realize that I never could have, would have, even thought about dealing with its subject matter back 43 years ago when I began The Open Mind.
For death and dying then still seemed too “down” a topic for the massest of the media. And I guess I wonder if in truth it may prove so even today.
But a couple of months ago I was invited by friends at the Project on Death in America to attend a Conference on the subject at which I encountered one of the most “upbeat” medical doctors and experts on end-of-life issues one could possibly imagine: my guest today, geriatrician Dr. Joanne Lynn, Director of the Center to Improve Care of the Dying at George Washington University Medical Center.
Now, Oxford University Press has just published Dr. Lynn’s Handbook For Mortals: Guidance For People Facing Serious Illness, written with Dr. Joan Harrold.
And it begins, pointedly enough, “Just two generations ago, serious illness and death were everyday occurrences, experienced within the family and the community. Most people died quickly after an accident or after the onset of serious disease. Now, most people have little experience of dying, and serious illness commonly lingers for years before causing death.
“Social arrangements and understandings have not yet caught up. Our health care system, our housing, our family expectations, our newspapers and television stories, and even our language have yet to make sense of our new situation.
“This book aims to help you as you face serious illness or death, your own or that of someone dear and near to you.”
Well, let’s see if we can talk about all of this today, and so … I turn to you Dr. Lynn to ask what the response is, usually, when you deal with the question of our mortality.
LYNN: Well, you know, Americans have not been comfortable with it. On the other hand, we’re often proud of mostly getting to grow old. And one of the things that comes with a world in which we mostly get to grow old, is that we mostly get the chance to die of a long, slow illness. And people are gradually coming to recognize that. It’s not ordinarily just sort of a bolt out of the blue when you’re 92 and golfing that’s going to see the end of you. Most of us are going to have a serious illness. Heart disease, lung disease, cancer, stroke that’s going to limit our possibilities in our last couple of years. It used to be that we pretty much threw that away. Now, I think we’re much more saying, “Wait a minute, that’s not a piece of time that’s short enough to throw away.” We could live well, we could have meaningful life, we could live comfortably while waiting for the end.
HEFFNER: But you’re suggesting here that our myths haven’t caught up with that reality as yet.
LYNN: Yeah, not even … just our myths … our very stories. We’ve almost no shared stories of how people live well while dying slowly at 86. Think about it. Do you have anything you can refer to, you know? I have elderly patients in nursing homes who say, “I don’t want to die like that girl in New Jersey”. They mean Karen Quinlin. It’s not at all likely to happen to them. But they have such a paucity of stories … we have nothing to say. It seems we need to learn what it would be to live wonderfully well while limited by arthritis … while unable to walk very far due to heart disease, you know. How long could you watch evening television before you’d see somebody who was very sick and disabled, but living a wonderful life and going to show up next week, and next week and next week. We don’t have any such characters yet.
HEFFNER: Do other peoples around the world?
LYNN: Well, not really. This is a new phenomenon for all of humanity. At the turn of the century the average age of death was 46. The average woman died of a complication of childbirth. Think of a world in which the usual child did not grow up with both parents alive. That was our world just a hundred years ago. So, it’s really a new phenomenon since World War II that there are whole populations who mostly will get to live past 65. 70% of us now die in Medicare. It’s expected to get up to 80% in the next ten to 20 years.
HEFFNER: And I guess I feel like pointing to you and saying, “And what are you doing about this?”. I know, indeed, because you’ve written this Handbook For Mortals, but what is the profession, what is the medical profession doing about this that you consider sufficient and applaudable?
LYNN: Well, there’s a lot that’s applaudable, it’s not sufficient yet. There’s a major effort by the American Medical Association to train every doctor in the country on at least the medical aspects of managing symptoms. The American College of Physicians has a group working on basic standards and stating what really good care might look like. There’s … the Project on Death in America has three or four dozen scholars now working full time on research and education issues. It’s a small start, you know. If you go to the National Institutes of Health and ask, “what are you sponsoring in the way of research on end of life care”, at least at some of the Institutes they will look at you quite quizzically. “We’re trying to avoid that, you know, our whole mission is to avoid dying”. But you know we’re gradually coming to some maturity. You know, if you completely eliminated all of cancer in adults, you’d get on average, only a year longer survival.
HEFFNER: A year longer?
LYNN: On average. Now there are some people, of course …
HEFFNER: No, I understand …
LYNN: … who get much longer.
HEFFNER: … I understand.
LYNN: But you would greatly increase the number of people dying of complications of Alzheimer’s and heart disease. You know, it’s a zero sum game, something is going to get you at the end. And we haven’t been used to thinking about it that way. You know, we sort of have this sense that we can be temporarily immortal for most of our lives and kind of put off the thought that there really is a death in store, and then somehow we’ll have this very confined piece of time when we come to terms with life and death and God and meaning and all sorts of things. And wrap it up and go. And unfortunately most of us won’t get that piece of time. Most of us instead will be sick and then sicker and then sicker yet. And we’ll be astonished at how many stages of sickness we can find before we finally find our way to the Pearly Gates. And the point of what we’re working with is to figure out how people can live well in that piece of time. When yes, of course, you have the disease that’s going to be on your death certificate. Okay, we’re finished with that. Now how do you live well despite a heart that no longer pumps real well? Despite having had a stroke? What would it mean to live meaningfully in the shadow of death? It used to be you could ignore that, cause the shadow of death was there only about enough time to say a confession and good-bye. But now you’re going to live that way for a long time. And it can’t just be shunted aside and assumed essentially to be a private matter. Deal with it however you will. Because much of it … for one thing, much of it’s in a Federal payment system. Your 70% right off the bat’s in Medicare. Another large chuck is in Medicaid. And then all the Veterans Administration and other ways that we pay for it. The way you take care of dying people is very heavily a tax-supported endeavor. You don’t think about it that way. We think about, you know, supporting long-term care and so forth. But in fact, it’s people who have the illness that they will die from … and they could live better or they could live worse. And if we ignore what’s going on they’ll live worse.
HEFFNER: You know, that’s so interesting that you say that. Because I realized at the beginning, as I began to read this book, and listen to you at that Conference, that…..very positive, and then slowly, but surely the notion of the years of what I interpret as declining capacity … intolerable to me. I shouldn’t say “intolerable” … I’m going to have to tolerate it. But I would think that the major problem that you face is keeping up people’s morale in the realization that they’re not just going to go with the snap of a finger.
LYNN: Well, maybe. A lot of what we aim to do is actually to learn more about ourselves in our new reality. I don’t know what the answers are going to be. I find it a marvelous field in which we’re learning so much new about ourselves, about what it means to be a people together, a community. What it means to come to the end of a life. I’m not sure how people are going to come to interpret long, slow declines. I know an awful lot of individuals … individual patients and families find tremendous meaning in a piece of time in which now maybe you don’t have to go to work every day. And you can actually watch that flower open or read the Bible, or be in touch with friends that you’ve long forgotten. Even some who died think through what their life meant. Bring your life to a close in a rather gracious way. You know we may come to think of it more as, you know, ballet rather than as, you know, short three minute acts.
HEFFNER: Of course …
LYNN: It’s a long endeavor.
HEFFNER: Of course, when my friend Dan Callahan sits at this table, he says it’s the medical profession with its constant search to prevent this final act, if you will …
LYNN: I find it hard to find easy targets for who is at fault. The medical profession’s so closely allied with its patients. You know …
HEFFNER: What do you mean?
LYNN: … the medical profession can’t be way out of sync with its community, or the community stops going. You know, it’s the whole culture that doesn’t understand how to deal with the fact of long, slow decline and eventual dying. It wasn’t just doctors, who in 1965 and ‘70 were enthused with these marvelous new ways we had to avert what had previously, just within ten or 15 years, been certain death. We all were enthused about it. How can we still write headlines in the newspapers that say, “New Drug Promises to Save 20,000 Lives Next Year”. No drug saves a life; it changes how you die. It makes it later, and lets you die of something else. What a humbling way to put it. But if we were really mature about thinking about how … you know, how we come to the end of life … a new cardiac … a new heart drug … wouldn’t be put in the newspapers that way. It would be put in the newspapers as “Small Gain Made in Life Threatening Arrhythmia, or Rhythm Irregularity in Heart Disease”. And it’d be a much more humble statement. But we like our pridefulness. The doctors like it, too. You know, so doctors need to change. But so does the culture.
HEFFNER: Would the statements that you would have made relate to the pain of dying, the discomfort that we all identify with dying.
LYNN: Well, I think we need to be very realistic, and I’m not anyone to sugarcoat what people face. It is very difficult to face the end of life and very often for very practical reasons. There are a lot of arrangements that can be made to make it easier. When you look at advertisements for apartments and houses, I bet in ten years or 15 years they’re going to say, “already adapted for handicapped living”. Why do we build houses that routinely have two or three steps here and there? We should almost never have that. Why do we build school buildings in suburban settings that aren’t already planned for retro-fitting for senior housing. Everybody’s going to grow old there. They’re all going to age in place, we know what we’re going to need 40 years later. Why don’t we plan for it? We’ll come to that, but it’s going to take us a while to do it. So, I think there’s a whole lot of adjustments that make it much easier. Physical pain, straight forward physical pain …
LYNN: … we can almost always relieve. I mean it’s very important that people recognize that we’re not mostly talking about the anguish of just being terribly wracked with pain. Our pain medications are good enough now that between medications and other interventions, you can get most people to a level where the patient will say, “I’m comfortable enough”.
HEFFNER: But you don’t believe that most of us understand that, do you?
LYNN: Oh, no, most people don’t understand it. And many people actually fear much more the disability; the denigration of not being able to take care of yourself, of not being able to be effective in the way you used to. That’s actually much more difficult for people. Even just to become impoverished … I mean the most common cause of becoming poor is growing old and getting sick. And, people, I think, are quite reasonably terrified of watching their savings dwindle, and, you know, can they possibly manage to make it out of life before they are out of funds. Those are the sorts of things that are much more difficult. You know, as a doctor I can sit and say to a patient, “You will never need to be overwhelmed by physical pain. I can … I know I can keep you comfortable enough that you’ll never feel that your life is overwhelmed by that. Now that doesn’t mean that you going to feel like you felt when you were 21. But you’ll at least be comfortable enough to do the things that you otherwise can do that really matter to you. To read the paper. To visit with the grandchildren. To go about your daily activities.” But it’s much harder to say that you can find a reason to bother to keep going.
HEFFNER: In terms of what you do? In terms of work? In terms of friends?
LYNN: In what kinds of things count as being of value. You know, we are in a culture that has counted your value as being, you know, a successful person on a television show. My value is being an effective doctor. If we are denied those things, then where do we find our own self-worth? And it requires a good deal of soul searching for some people. For some people it’s not as difficult. But some people really find it quite anguishing. No longer to be able to run their business or run their household, or whatever it was that defined them. And we haven’t done very much in terms of as a society supporting people to have meaning, to have a place in our hearts, a central place in our thinking, when they aren’t making a difference in the world in sort of conventional ways. There are cultures that have done better at that.
HEFFNER: That’s what I …
LYNN: But I think we’re learning to. I mean people are coming around to it, where we come to value people who can tell old stories. Who, you know, I had a wonderful patient …
HEFFNER: I can do that.
LYNN: … I had a wonderful patient once who rode the buckboards in the Oklahoma Land Rush. And I remember medical student after medical student having their eyes opened to how wonderful it was to take care of very old people because she could tell these marvelous stories of actually being on the frontier. [Laughter] I mean, we are, I think, learning to respect some of that. I think it is much more difficult when people have dementia. And I think that that in many ways is our toughest large group of people. How do you truly love and cherish someone who can’t remember you from minute to minute? Can’t remember themselves from minute to minute. That, I think, is quite challenging. But a person who stays alert to the world … sure some will become quite depressed and some will become very afflicted with what they face. But most people who can stay engaged do a lot of personal growth, they tremendously value that time. Now, what I would say to a person who’s facing a serious illness … one of the things we recommend in the Handbook is to think through what would be left undone if your time were to be short. It’s a marvelous way of prioritizing things. And almost everybody who still can do some things, that has some relationships, has some things they want to do.
HEFFNER: Is it just my own persnickety nature, or are there others who react as I reacted when I read Handbook For Mortals, with “Don’t tell me that … come on now, I … that’s not something I can do.” It’s very difficult to think of the unfinished business and of finishing it then, or even making an inroad upon it. Now is that my peculiarity?
LYNN: Oh no. I think most people feel that way some of the time. And that’s fine. You don’t have to spend all of your life worrying about the fact of mortality. But it does make your life different to have worried about the fact of mortality.
LYNN: And so …
LYNN: It’s a real value to the present. It reminds you that the time is short. That every day counts. You know, the reason we do anything in a sense is because we don’t have all the time in the world. You know we only have the time we are in the world. And it creates a certain urgency. If you’re going to have been a good father, if you’re going to have been a good, you know, mail delivery person or clerk or whatever, you’ve got to do it now. Because you don’t have hundreds and hundreds and hundreds of years to come back and do it right. You’ve got this chance.
HEFFNER: You mean carpe diem always was a good idea.
LYNN: Yeah, yeah. But it’s also that we have an idea in this culture, and in most of the Western world that in a sense you’re living indefinitely until you hit a point when you’re dying, and from then on you’re dying. And you cross some divide. You’ve gone from what I call “the world of the temporarily immortal” … you won’t cognitively know that there’s going to be a mortality out here somewhere. We don’t really live every day that way. And then you hit a transition … this is our idea … this is our image … that … and after that you’re in the world of the dying … and it’s as separate in our minds as salt and pepper or men and women. There are almost no ambiguous cases. And we’re actually quite coercive about what you’re allowed to do, when you’re among the dying. What you’re allowed to do is to say some good-byes, make peace with God, give away your possessions, wrap up your life … you’re not allowed to plant gardens, or buy puppies. You know … it’s inappropriate. You can’t stay at the helm of a business. That very model is real trouble for us, because most of us aren’t going to die that way now. Most of us are going to die by inches. And now all of a sudden we’re going to be gone. So we’re going to be very, very sick … and then get a pneumonia, get an infection, have a heart attack … something that kills us within just a few days. But you couldn’t have told at the beginning of the week before that this … you’re right up against it now. Probably 70% of us die that way … only 20% or so die with this “Love Story” sort of scene in which you have a few weeks of saying good-bye and fading away, you know, rather elegantly. Most of us are going to live a long time with a bad disease, and then die suddenly. So there’s never a piece of time that you can carve out and say, “Well, now’s when I do the dying stuff”. So we have to learn some new models … how is it that a person with bad heart disease, or just a person who is 92 and is realizing that, you know, probably up against it sometime soon. How can we, in a sense, wrap up our life, but continue with it. Do what would have been done in the 1800’s when a ship captain went off to sail, and really say good-byes, but hope to be coming back. This living with dying over a long time is … requires some new creative energies. We don’t know how to do that well. But that’s the divide that we need to face in the next ten or 15 years. Is how to build even care systems … medical care systems and nursing homes and so forth, in which it’s supported and okay to talk about dying, to talk about coming to the end of life, to wrap up your life, but still to live it. One of the worst things that happens in our present model is for a doctor to say, to someone you love, “You know, Mrs. Smith, you really are dying now, you only have a few weeks left”. And then for Mrs. Smith to still be there a year later. You know she sort of wrapped everything up, said good bye, gave everything away … including, you know, who cooks the Thanksgiving turkey. And all the little things that were her job, and then she’s still there. And no one knows what to do with her. We need to get over that discomfort, because it’s most of us. Most of us are going to die that way. We need to learn new models, and to do that we need a lot of stories, we need people talking about how their mother handled it that was clever, or how their uncle handled it that really didn’t work so well. And start figuring out what is it that in the relationship of children and parents, of communities, of churches, of you know how the news media and the televisions are going to portray this piece of life. It’s such a big piece of life now … three years, on average, men will spend unable to care for themselves every day. Five years for women because we have less heart disease and more arthritis … so, you know, that’s a big piece of time. And yet, it’s completely absent in our popular culture. It’s as if it doesn’t exist. So every family that comes up against it, comes up against it as if it’s their own problem, and it’s new, no one’s ever seen this before. Part of why we wrote the Handbook for Mortals” is to assure people that others have traveled this path, they figured out some things that are better to do and some that are worse. And then there are some that we really don’t know yet. You know, try out some things and see how it works.
HEFFNER: Why was I crying at so many points in reading this book? Why do you think?
LYNN: The end of life should be touching. And … I still cry at almost every time I hear the stories of a child being born, too. Or of people making a commitment to marriage. These are important emotional events. And of course it’s sad that a person should have to die, but it is built into our nature. We don’t have a choice about that. We only have a choice to do better or worse with it.
HEFFNER: Of course, there’s that wonderful little bit … a dying man obviously, asks the nurse … have I died? No. How will I know? And I think that is a thought that passes through the minds of all of us. The Handbook for Mortals … you think we can, we’re able to change … I used the word “myth” before … that we’re able to change the sum and substance of our approach to death and dying?
LYNN: Oh, of course. We have to. Our demographics are going to make us come to, at least more serviceable stories, myths, sources of meaning. They have to. We’re going to have so many people, so old and so sick at the same time, we can’t just pretend it doesn’t exist. And we’ve done it before. You know there was a time when people truly thought that slavery was all right. Well, we really turned that on its head. No one thinks that’s all right. There was a time when we really thought that women shouldn’t vote. We’ve really turned that on its head. You know, it’s just one more, you know, cultural-social revolution that is brought on us by the force of insight and the force of demographics.
HEFFNER: You know, it will be interesting to see, I started the program by saying that 43 years ago when I began The Open Mind I don’t think I could have … I don’t think I would have dealt with A Handbook For Mortals. And then I raised the question in my introduction to the program … I wonder if I can get away with it now. You’re saying, we must. We must deal with this subject.
LYNN: Well, I think that in fact, I mean I’ve been working in this sort of an arena for, oh, 25 years or so now, and there’s been an enormous revolution. You know, when I first started in medical school … every patient had a resuscitation attempt … the 92 year old with 16 illnesses would have a resuscitation attempt. The intensive care unit patient that you had done everything you knew how to do still had the chest open and the heart massaged. We didn’t know how to stop anything. Now that’s just seen as outrageous. I mean nobody would do those things now. We’ve come a long way. When I first started working in hospice in 1978, patients routinely came to our hospice in Washington … from leading, teaching institutions and so forth, never having been treated for pain. Now there are very few cancer patients who don’t get some treatment for pain. In 1965 a study showed that almost no cancer patients were honestly told their diagnosis. By just ten years later, the same proportion … almost all … were told their diagnosis and their prognosis. We’re coming to terms with things and there’s a good deal more public attention … we show it in some odd ways at times … I mean the interest in Kervorkian and suicide, and so forth, are all parts of this. But it’s also a sense that we really do owe it to one another to do better than we’re doing now. It’s wonderful to work in a field in which no one defends the status quo. Everybody is ready for some kind of improvement.
HEFFNER: But you know, you’re such a wonderfully upbeat person … that I wonder if the extent of these changes is correctly measured by you. And, we’re reaching the end of our program now, and you’ve agreed to sit still and let us do another program, I want to ask you about some very specific areas in which, it seems to me that your own researches have indicated that we’re not yet dealing with the phenomenon that you describe. Is that fair enough?
LYNN: Sure, although remember, when you look at the boat’s wake, you don’t necessarily know where it’s heading.
HEFFNER: [Laughter] I should have known that you’d come up with that. Thank you so much for joining me today, Dr. Joanne Lynn. Stick around, let’s continue to discuss this. And thanks, too, to you in the audience. I hope you join us again next time. And 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.