The Lemon of Illness and the Demand for Lemonade

GUEST: Dr. Jessie Gruman
AIR DATE: 07/04/2012
VTR: 05/24/2012

I’m Richard Heffner, your host on The Open Mind. And it’s been a number of years since I first joined at this table in a no-holds-barred conversation with Dr. Jessie Gruman, the founder of the Center for Advancing Health, a non-profit institute designed to translate health research into effective public policy and private practice.

I titled our first programs together “Rx for Health Policy and Practice”.

Later, we would discuss my social psychologist friend’s compelling After Shock – What To Do When The Doctor Gives You or Someone You Love a Devastating Diagnosis … which the late great physician Robert Butler called “a humane and immensely important book about coping with a catastrophic disease.”

Still later, we parsed my guest’s informative guide to the care we Americans could take of our health. She called it The Experience of the American Patient: Risk, Trust and Choice.

And since Dr. Gruman hasn’t been reluctant to talk about her own horrendous encounters with heart disease and cancer when they seem to be teachable moments in the public interest, I would ask her if risk, trust and choice have served her well enough.

And I wonder if she would also discuss her recent essay “The Lemon of Illness and the Demand for Lemonade”. What did you mean by that, first of all?

GRUMAN: As somebody who speaks and talks about being sick and what it takes to find good health care in this country, people often come up to me and say, “Oh, it’s so great that you’ve made such … you know … made so much of your illness … you really have benefited us by your illness, you’ve really made so much of it. And I, you know … I …

HEFFNER: Wanna kick them, Jessie?

GRUMAN: (Laugh) No, no, no. No I don’t want to kick them. I really do, I really think that people believe that and I often … also think that they don’t really know what to say to somebody like me who has been so sick so many times. And, and basically uses my experience to try to help others to understand what they need to do. What they might do to care for themselves.

But I think that … that the notion that somehow illness empowers us or makes us better people, or that illness is a particularly powerful teaching tool is really insidious.

I’ve found that when people say that to me that I feel like, “Well gosh, if I haven’t really learned something … if I’m not a better person, then it’s not only my body that’s failed, but it’s also me that’s failing.”

And I think when you, when you ask people who have been sick, like me, to, to talk about or feel courageous and decisive and like, we’re better people for our illness … you’re putting pressure on us that’s, that’s beyond what we often can handle, especially when we’re ill. Illness is not an ennobling experience. Some people learn from it … I certainly have learned from it. But, you know, if I had one … if I had any wish in the world, it’s that I wouldn’t have ever had to go through this in the first place.

So, you know, I’m not making lemonade of my various illnesses, I’m … ahem … trying to fashion the … what I’ve learned from that into something that would help somebody else. I don’t think that’s lemonade. I think that I’m, I’m fortunate to have the time and the resources and the interest to do that. But I would rather not have the lemon of this job. I’d rather … the lemonade of this job, I would rather have had a life without illness.

HEFFNER: Well, of course, I, I was thinking of your little essay … the series of them put out by the Center for Advancing Health … when one day … not that many months ago … you wrote “Another devastating diagnosis to face … I have stomach cancer and will undergo surgery to move … remove part or all of my stomach today”.

GRUMAN: Right.

HEFFNER: And I’ll be damned if I don’t wonder, “How the hell does she do it?”

GRUMAN: You know, I do it like all of us do it, you just put one foot in front of the other, in front of the other and, and, and you hope that you’re making the right step.

HEFFNER: Have you been making the right steps?

GRUMAN: You know … I … I think for the most part, yes. But, you know, as I write about in some of these essays, I don’t always know when I’m taking the next step that it’s the right step. I often am confused by the, by the research evidence. I’m confused by different doctor’s opinions. I’m confused because I have chemo brain or because I’m recovering from surgery. There are all sorts of places that I, that I get confused.

And I’m also confused often because so much of the health care that we receive now, we kind of have to figure out ourselves. Responsibilities are falling more and more onto patients … to chose the right doctor, to chose among treatments, to get the treatments, to recover from the treatments and manage those treatments. Those are all responsibilities that now fall to us.

And many of us, trying to do this when we’re ill, really struggle. And I’ve struggled, even though I have really good support from friends and family.

I find the burden that, that I’ve had to take on in caring for myself and getting good care, has been significant. And I am concerned, not only that, that I have … have made the right steps, but that others who are in similar situations with bad diagnosis, or even middling bad diagnosis, or even caring for themselves … will have good access to people who can make them sense of what it is they need to do to care for themselves.

HEFFNER: Well, Jessie … we, we’ve, we’ve gone through a period now where we have been saying to doctors the “father knows best/doctor knows best” approach is not acceptable.

GRUMAN: Right.

HEFFNER: You think we’re so right in that? Given the confusions that you talk about now?

GRUMAN: Well, you know, one of the gifts of modern health care is that there are often choices now for almost every thing. For almost every treatment, for, for many tests … you can have this test or this test. Or you can have this treatment or this treatment … there’s so many different ways that you can approach a given diagnosis.

And, and it … I, I think for most patients … most patients when we’re asked … say, “Yes, I want to be involved in making decisions about which treatments I get.” Because, you know, one treatment may make it impossible for me to drive, which I need to do for my job.

Another treatment may leave me incontinent, which I don’t want to have. And I need to be able to make choices about those things.

I think that sometimes that whole notion of people being involved in their decisions, though, is over estimated, both by physicians, who think that we want to know more than some of us do.

And by patients who … you know, when you ask me in the abstract … of course, I want to be involved in every decision about my care.

But, you know, when I’m lying in that bed … there’s some decisions that I don’t want to be involved in. I just want to be taken care of by somebody who has really good judgment.

And so, it’s this … I think it’s this really fine dance that requires sensitivity by both patients and physicians and one of the problems is that, that many physicians feel like they don’t have the time and really … to really understand the needs of each patient and their decision making process.

And patients find that their desire to learn the things that they need to know in order to make good decisions go in and out of their enthusiasm for joining in as a, as a kind of a partner in the, in decisions about our care.

And so, you know … I think what, what the whole notion of shared decision making has done, has put, has put both us and our clinicians in a position where we have to talk more. And to know each other better in order to trust each other sufficiently to make the choices.

And it’s really difficult at a time when there’s more information and less time for making those decisions.

HEFFNER: And less money to pay for the time to make those decisions.

GRUMAN: Absolutely.

HEFFNER: So where are we and what do we do?

GRUMAN: Who’s the “we”? (Laugh)

HEFFNER: You’re so much interested in public policy …

GRUMAN: Right.

HEFFNER: … and so you’re the one on the spot right now. What, what path do you think you would like to see medicine take in these terms.

GRUMAN: Well, I think that the … the answers are many. You know it, it goes … it goes on, on one end from recruiting physicians … students to become physicians who have a different orientation and who are trained in slightly different ways to be more, kind of, collaborative with patients. That’s one waaaay distant kind of strategy.

But there are, there are some kind of strategies on the table that are under consideration by the, the current health care reform effort.

For example, to make it possible for more people to get primary care and have a primary care medical home which would give them a place where they have a, a clinician who understands them, who shares care with nurses and P/Ts and other health care professionals who can kind of really help answer a given patient or family’s questions. And, and use the medical expertise available in a primary care practice, not only to answer all of the day to day questions that we have about our health, but also to help us to coordinate the specialty care that we have.

You know many people now, sometimes because we don’t have a primary care physician and sometimes because we’re older and we have more complicated care … have more than one physician.

And, you know, we’ve been in this situation until fairly recently … some of us still are … where (clears throat) … excuse me … our physicians … our clinicians … just don’t communicate with one another about our care … what medications we have, what tests we’ve had, what’s going on with us and so we’re in a position of doing that.

Technically, (clears throat) … excuse me … a primary care medical home … with an electronic health record would help to coordinate both our care and the information about us, something that at this point … we’re most of us doing on our own, which, for many of us is a burden.

You know, I have eleven active physicians. And it’s a rare thing when one of them communicates with another.

I am the sole mediator of information between those 11 physicians. And I can tell you, it’s not a good idea. My judgment is, is not always right about who needs to see what piece of information in order for me to be healthy.

HEFFNER: Yes, but I think even as you say that you’re sophistication, your level of knowledge, your understanding of medicine is great enough for you to be in a position that we poor slobs are not.

GRUMAN: Well, and you know that really is, is the insight that’s behind my commitment and the commitment of the Center for Advancing Health to really try to focus on what it is that we have to do in order to benefit from our health care. Because the burden of responsibility is shifting more and more to us.

Physicians are overwhelmed, they have a lot of work to do. They have new, new evidence, new approaches … they’re, they’re under a tremendous financial pressure and we … patients are often ignored … or the new responsibilities that we have are often ignored by systems and by our clinicians in terms of what do we have to know and actually do in order to benefit from our care.

Just knowing how to make use of a given hospital when one of your loved ones is in there is a tremendous task.

HEFFNER: What do you mean … making use of a given hospital?

GRUMAN: When can you go? Where is the person? How can you make sure that, that, that the … that all of the records are there … that are relevant … are there? How do you pay for it? When you go in the door, do you know where your person is? When they leave for a test, how can you find them? What kind of help do they need when the nurse is outside of the room?

My … I just wrote about this recently. I, I … my Dad has been in the hospital and I walked with my Mom into the beautiful new hospital. And there was … it was 8 o’clock on a Monday morning and there was a pianist playing Chopin in the lobby. It was just wonderful.

HEFFNER: Really ticked you off, didn’t it.

GRUMAN: It did tick me off, I just thought “Oh, man, you know, my Dad would really have liked to, to know about this. I mean I think he would have … he would have traded breakfast on Saturday … and a nurse looking in on him more than once a shift for this nice Chopin in the morning.

You now … even hospitals say you need to have somebody with you at all times when you’re in the hospital. I find this really … really interesting quandary.

You know, we hear all the time about how unsafe hospitals are. The last time I was in the hospital, every physician who came to visit me said, “You know, you gotta get out of here … hospitals are the most dangerous place in the country.”

And I’m going, “Well, yeah, but I can’t get out of here I just has surgery. What am I going to do?” So you know, my anxiety level is going up, “it’s not safe, it’s not safe, it’s not safe”.

And I know it’s not safe, I mean I read the IOM Report … I know that the, the prevalence of medical efforts is horrifying.

But, you know, my, my husband works. He can’t be with me 24 hours a day. And, and I’m not alone in not having somebody who can be with me to check that everybody who touches me has washed his or her hands. That everybody who shots something into my IV bag is shooting the right thing in there.

You know … it’s … we are in a funny position … we patients when we go into the hospital. When we’re told we need to have someone with us to make sure that we’re safe and to care for us, to be back up for the nurse who doesn’t come, the breakfast who doesn’t come … or the errors that might take place. But where do we get that person? How do we do this?

You know, and that’s just one of many situations where I feel like, you know, we are … we’re not equipped to fully benefit from the care available to us.

HEFFNER: Jessie … is anyone besides yourself and your organization taking on the responsibility to wave those flags and to give us that insight into what we must do?

GRUMAN: I think that there are lots of groups who say … there’s, there’s a group, for example, of, of, of people who have lost children, or spouses or sisters because of medical errors.

And they are fabulous advocates for people really understanding hospital care, asking questions, not taking things for granted, and they work really hard.

Many of them, independently … they form organizations and they are committed to, to patient safety.

There’s another group of people who, who are really interested in avoiding avoidable care. You know, you hear about “we get too many tests, we get treatments that we don’t need”.

And there’s a whole group of people heading by the … hmmmmm … ABIM? A new effort to try to clamp down on avoidable care and really to make sure that people don’t get unnecessary tests. Big effort on that. And that’s really important. But that’s just, that’s just one little piece of it.

There’s another effort by patients about “how can we get our medical information’, they’re very laser-light focused on getting access to their medical records.

So, you know there are groups out there and there are groups who are, who are really trying to make sure that people have, kind of the, you know the information about, you know, “how do I make a decision about whether to take hormone replacement therapy or not? Or how do I make a decision about whether to get spine surgery or not to how to … you know, give them the risks about that kind of stuff.

And then there’s all that information out there on the Web about like “where my pancreas is located?” .. so there’s lots of stuff out there .

Nobody, nobody besides us has kind of put it together and said “You have … we have to do all of these things. How are we going to concretely help every person in America … not just people like me and you … every person in America to be able to do these things.

Because you know what … the more people like me and you can kind of like muddle our way through with our fancy friends and our friendly doctors. You know, that means that we’ll do better and the people who don’t have friends as doctors and who don’t have the resources and don’t have the sophistication and the confidence that we have to find good care fall further behind.

HEFFNER: Jessie, what do you think about the, the web as a source for those of us who need information?

GRUMAN: I think the web is a fabulous source of all kinds of information … some of it good and much of it bad. I think that using it well requires real skill and attention and … actually some knowledge in, in order to be able to separate the wheat from the chaff.

But you know, it’s not only the web that we’re talking about as being important for, for people when they’re ill.

It’s, it’s websites when there’s information on it. But there are also all sorts of other … there, there are groups, like patients like me and, and disease … other disease groups where people get together who have similar conditions and they provide social support, they exchange information. They give each other information about doctors and treatments. Some of those groups are very powerful and very effective and very helpful to patients. So there’s, there’s that whole piece of it.

There’s a whole social media, a kind of tweeting piece of it where people get information and have conversations about …

HEFFNER: Pretty scary.

GRUMAN: … ah, it can be scary … it can be scary. I’ll tell you … I think that most people who are … when they’re really sick … don’t use any of it.

I, I …this basically was my experience. I had great expectations when I got sick this most recent time that I was …this experience was going to be different because I was going to have access to all this information, all these people, all this support and help online when I was sick.

HEFFNER: And?

GRUMAN: (Laugh) Well you know, for the first … for the first week it was great. For two reasons, one is because I could find (clears throat) a lot of information really quickly and easily, but it was pretty general.

And when I needed to get much more kind of specific information … it was behind academic pay-walls.

The other thing was that … at the beginning it was great … because I was able to tell people, you know, all of my friends all over the world and colleagues and people who knew me from, from my work that I was sick and I got the most … I can’t tell you … how heartening it was and how lovely it was to have that kind, kind of support as I was heading into this new adventure … you know … I would say, “First time you get cancer, you’re scared of the unknown. Second time, you’re scared of the known”. (Laugh) It was just fabulous to have all this.

But, you know, once you’re down that tunnel of treatment … I, I … it was months before I emerged. I wasn’t interested in email … email … even with close friends. I can barely talk on the phone to my family. I was so ill. I just … you know … so the web was really great for me to feel prepared and to feel like I was going in the right direction. But when it really came down to it, you know, there is no “app” for suffering. (Laugh) You just …

HEFFNER: Maybe we should have one. Good idea?

GRUMAN: You know … I just … it would be great. It would be great if there was such a thing. I, I … you know, I think … often times people who develop new websites and new apps and new social media things … think … they’re so focused on … they think … diabetes isn’t going to be a problem if people use this.

Or, you know, if people really have access to all those other people with breast cancer, they’re not going to need a … you know, you still … as a sick person … a person who has been sick … you still spend hours lying on the couch, you know.

HEFFNER: You know, I thought you were going to be much more negative, however, not talking about difficult it is to make use of what’s there. But, as I’ve come to feel and I think you’re contradicting me and you’re contradicting me from knowledge … I’ve come to feel that it’s a dangerous thing. That too many people pick up things that are not verified … maybe not verifiable

GRUMAN: I think that happens a lot. I, I agree. I think, I think there are dangers there. I think many people pick up weird stuff and then they go down these roads … and we’ve seen that in some of the, in some of the vaccine areas …

HEFFNER: MmmHmm.

GRUMAN: … areas where people have made these decisions that have health consequences not only for themselves or their children, but for the rest of the population.

There are dangers. There, there are very few things these days for which there aren’t dangers. I mean … consider that I am a person who’s had, you know, four different cancer related diagnosis, some of which have been caused by my first cancer treatment. You know, there are dangers of … there are consequences.

It’s not … there are no guarantees that it’s going to be perfect and that it’s going to be great.

I would say that it’s better that we do have access to information than we don’t. I think that as people become more accustomed to looking on line, I’m hoping that they get more confidence and better skills to separate the good information from the bad information.

It’s not like we can kind of close it down because we think it’s going to be dangerous (laugh) for people. It’s, it’s there.

HEFFNER: Jessie, when did you start your organization?

GRUMAN: I started the Center for Advancing Health in 1992 with support from the John D. and Catherine T. MacArthur Foundation and the Nathan Cummings Foundation.

HEFFNER: So, we’re talking about 20 years.

GRUMAN: Yes.

HEFFNER: As you look at us, at our nation today …

GRUMAN: Yes.

HEFFNER: … as you looked at it 20 years ago … you’re optimistic, or otherwise? In terms of what we as a people do about our own health, can do about our own health …

GRUMAN: I’m optimistic. When I … when we started the center for Advancing Health there was … the, the reason we started it was that there was no recognition, really in the public’s mind that behavior really effected how your own personal health was going to turn out.

And there was very little recognition from the research community that, that it’s not only individual behavior but how economics and social factors and political factors and environmental factors affect people’s health.

And there has been an absolute sea change in our understanding, our scientific understanding of how all of these factors affect our health.

Our ability to kind of capture those various streams of evidence in, in public policy is still lagging behind a little.

But I would say that in the past 20 years we’ve seen just, just, a dramatic change in our understanding of what causes disease and what do we do about it … from “it’s a germ”, it’s a defect, it’s a genetic thing to really there is a tremendous influence of environmental, economic and behavioral factors.

HEFFNER: I get the signal we have two minutes left. In those two minutes I want to ask you about public policy …

GRUMAN: Yes.

HEFFNER: … and where are we?

GRUMAN: Well, we are at a point where I think we’re stuck. (Laugh) Quite frankly. I think we’re stuck on a lot of issues that could make a, a difference in people taking … having support and taking on these new responsibilities.

I feel like on one side we have people who say, “You know what, people can figure it out themselves. Just give them the money, tell them it’s like a grocery store and you get your health care and you figure out what you want and figure out what you need.”

And on the other side we have people who say, “Here, we’ll do it all for you.” And I know it’s not reasonable for us to do either of these things.

I think we’re a resilient people and we’re a smart nation and I think that we’ll figure this out. We’re going to have to cobble this together and I worry that there doesn’t seem to be particularly on this issue of “how do we help us … individuals … you, me … our neighbors … the people in the grocery store … how do we help us define and really make use of our care so that we benefit from it?”

This is, in some ways, an, an afterthought … that people kind of think, “well, we’ll figure it out once the financing for medical care and access to care gets straightened out.”

I think that this is really important. I think that our health depends on our ability to make use of care … of our care … depends on our ability to get value from the health care that we pay for.

HEFFNER: Jessie, in saying “good bye” and thanking you … what’s the website …

GRUMAN: Ah, the website is www.cfah.org or www.preparedpatientforum.org … I write there every week and other people write about what it takes for us to find good care and make use of it.

HEFFNER: And that’s the point I bless you and thank you for being here again.

GRUMAN: It was my pleasure.

HEFFNER: And thanks, too, to you in the audience. I hope you join us again next time. Meanwhile, as an old friend used to say, “Good night and good luck.”

And do visit the Open Mind Website at thirteen.org/openmind to reprise this program online right now or to draw upon our Archive of 1,500 or so other Open Mind and related programs. That’s thirteen.org/openmind.