The Experience of the American Patient

GUEST: Dr. Jessie C. Gruman
AIR DATE: 03/27/10

I’m Richard Heffner, your host on The Open Mind … and once again my guest is Jessie C. Gruman, Founder and President of the Center for Advancing Health, an independent, nonpartisan, Washington-based policy institute funded by the Annenberg, the W. K. Kellogg and other foundations.

Since 1992, the Center has worked to prepare Americans to make good choices about their health and healthcare.

And now Dr. Gruman has written a brief, enormously readable and quite extraordinarily informative guide to the care we Americans could take of our health. She calls it “The Experience of the American Patient: Risk, Trust and Choice”

Reminding us of Ronald Reagan’s wise advice to “trust, but verify”, my guest writes about what seems to be the number one issue before Americans today that “Answers to two basic questions could provide major momentum toward reforming America’s healthcare system.

The first is: Who do we trust?

The second is: How do we verify that trust?”

And I, of course, would ask the good doctor what her own answers are to both questions. What are they, Jessie?

GRUMAN: I think it’s important to start by, by thinking about how our … the extent to which we trust our healthcare providers has shifted over time, and I think that it’s part of a larger sense of who, who we trust in the world. And how, how has that changed.

I think, you know the Internet has democratized information and made it so possible for all of us to be experts. And so among many people there’s a real sense that “Well maybe my doctor doesn’t know best. Maybe there’s a better answer online. Maybe there’s a better answer not only on a website online, but in the community of people like me online.”

So there’s this, I think there’s a kind of disruption in the original trust that we had in the people who care for us … cared … care for us … our doctors and our nurses. You know from a long time ago, physicians and other healers have been well respected, highly authoritative voices in the community.

And I fear that that trust is being undermined, rightly or wrongly, by what’s going on right now with both … with, with the democratization of information, but also the assault, basically, on authority by various parts of American society that says, you know, people who are experts are elites and they’re trying to pull the wool over our eyes or they don’t have our best interests at heart.

It’s so important for us to be able to trust the people who are going to cut open our chests and fiddle with our hearts. But how, how do we square the need to really trust our physicians with all of the information out there and all of the currents out there in our society that tend to undermine our ability to trust the person who’s actually caring for us.

HEFFNER: You know, it’s interesting … before you said, making the same point, you said … the people who care for us. And then you said you meant … “who cared for us”.

GRUMAN: (Laugh)

HEFFNER: But it seems to me that there’s something important there. Do all those people on the Internet, all those people who are providing all that information give two hoots in hell about us? Do they really care for us anything like those to whom we turn, or used to turn for care?

GRUMAN: Well, first of all I think it’s … I think that many people continue to see all of healthcare through the eyes of the physician who they trust. And, and have known.

Eighty percent of the American public says that they have a regular doctor. And many of those people have a doctor who they’ve known for a while and who they … you know … it just doesn’t, doesn’t enter their mind that this person wouldn’t have their best interests at heart.

But the news media is filled with stories of physicians who have a conflict of interest, or who don’t … or who are doing well by doing good by referring them to their own X-ray or diagnostic facility.

So, you know, there’s, there’s this kind of undercurrent of mistrust or reason to mistrust … the physician who’s been caring for you for a long time.

And then there is this notion out there that, you know, if it’s online, you know, you … you look at it and believe it at your own risk.

There are many people who still believe …it’s, it’s a funny contradiction that’s going on right now. There are many people who believe, despite the fact that they may be violently anti-government (laugh) … they still believe that the government wouldn’t let us have it if it wasn’t good for us.

And that includes, to some extent, what they … what’s allowed to be advertised on the Internet.

There’s a sense that, that the danger is not as real as it perhaps is. That some place that there’s regulation … someplace there’s control, someplace that somebody is protecting us. That there’s a safe playground within which we can make these decisions. And, and we can make all of these choices about, you know, food supplements and alternative providers and regular providers and that somewhere someone has kind of made it, made it possible for all of those choices to be within the realm of normal and safe.

HEFFNER: And you’re saying there really isn’t safety in numbers … in the numbers of inputs we have relating to drugs and doctors and procedures.

GRUMAN: No. And I … you know, this is really one of the fundamental things that I’m concerned about. And that is that as … as, as medical knowledge progresses … one of the paradoxes is that we know more, but in order to realize the promise of those advances we, as patients, or as people, sick or well, have to do more.

It means that we have to do more in terms of caring for ourselves and it means that we have to do more in terms of making choices about our healthcare, about our doctors, about our health plan, about the hospital that we go to, about the, about what kind of surgery we have.

Before there weren’t … (laugh) … first of all there weren’t that many choices. And secondly, many of the choices were made for us, within the hospital, by our physician. But now we have to make all of these choices and to me making a choice without really good solid knowledge, is not making a choice at all, it’s guessing, you know.

And, and I’m concerned that increasingly people are in a position to make choices where they can’t find the information, they don’t know the stakes of the, of the decision that they’re making and are kind of on their own in making these decisions that can powerfully influence their health.

HEFFNER: So the word “choice” doesn’t have that wonderful attractiveness for you that it does, let’s say for certain Congressmen, even the President of the United States?

GRUMAN: Yeah … we are a nation that’s built on, on the Abrahamic faith … that, that say that, you know, Adam was ejected from … or chose … chose … to leave the Garden of Eden because he chose to eat from the tree of knowledge.

A choice … the idea of choice … the idea that we determine our destiny is so ingrained in our, in the American way of being … so, choice really resonates with us. It’s something that we want to have.

It’s interesting that people … if you ask people if they choice in their healthcare, they will, of course, say “Yes, I want choice. I want choice on everything”.

But when you say, “Well, would you like to choose which treatment you want for your breast cancer?” They say, “No, I’d like to do what my doctor wants me to do.” Or what my doctor thinks best.”

You know, in the broad sense we’re very, very interested and demand choice. But in the, in the actual personal immediate sense, we’re often … we often feel … rightly so, that we are just not qualified to make a lot of these choices.

HEFFNER: But we aren’t, are we?

GRUMAN: No, we’re not qualified. No.

HEFFNER: Can we become qualified? Is that what you’re pushing?

GRUMAN: I, I am not … I’m not pushing anything. What I’m saying is …

HEFFNER: Advocating. Forgive me.

GRUMAN: I’m advocating … no, I’m recognizing that in order to get safe, decent healthcare we have to make choices. We are making choices all the time right now.

And what I’m advocating is that for people to understand that these are choices that they’re making, that not making a choice is also a choice. People to understand that they have a choice. And to have enough information and guidance to make a choice that’s right for them.

Some people will never be able to kind of pull in … pull together all of the information that they need to make a really … a choice that takes, takes into account all of the different trade-offs. Some people just won’t be able to do that.

And some people don’t want to do that. And I think we need to recognize that there are many of us who, once we know that it’s our responsibility and its our choice, we’ll just go ahead and do it.

But there are also some people who will never be able to do that. And, and what are they going … because they can’t make a good choice, are we going to punish them?

HEFFNER: Jessie, you know, I have the feeling and I had the feeling as a read “The Experience of the American Patient: Risk, Trust and Choice” that you were talking, writing less about choice than about “doing the right thing”.

GRUMAN: Well, yes. (Laughter) Because I believe that we have a choice to, to … we often have the choice to do the right thing. But I think in, in my discussion about choice and doing … and choice … of the choice … a good choice that takes into account good information or a choice that is just made on the spur of the moment from the gut.

I was … I was trying to focus on the notion that there are always going to be people who can’t do … who can’t follow through on the choice. Who can’t, who can’t do the behaviors that the choice entails.

And I, I think that couching the notion of all of healthcare is a bunch of choices and we just choose … we choose our doctor, we choose our treatment … all of this … disproportionately affects people who are vulnerable.

HEFFNER: Well, your Center has been dedicated to advancing health.

GRUMAN: Right.

HEFFNER: Would you advocate pulling back on the degree to which we have encouraged … tolerated perhaps is the better word … the proliferation of commercial reaching out to the American public to choose “this” medication rather than “that” medication. And the opposition is there. I mean it’s been that kind of advertising. You’d think we’re just buying cars here. Or frying pans.

GRUMAN: Right. Well, I think, I think you’re right to distinguish the choices that we make in healthcare from the frying pans and the flat screen televisions.

We often make choices about our healthcare under conditions when we are feeling vulnerable, when we’re feeling panicked, when we’re feeling really emotional, when we’re feeling pressed for time. And, and, and that’s just one of many reasons that many of the choices that we make are not like consumer choices. Not to mention that we don’t have sufficient information that our … comparable information to the information that we have about flat screen televisions, for example, for doctors.

HEFFNER: Would you limit the …

GRUMAN: So … what I …

HEFFNER: … advertising …

GRUMAN: … I, I would limit not only the advertising … but I would limit the public diffusion … the, the media coverage of the disagreements in science about very, very minor issues, which look … which are reported as news, which are irrelevant to the public.

Many of us … about many of these things … really want binary information. We want a simple answer. We want many of our healthcare answers to be the same as “Should I smoke? No. Should I get a mammogram? Yes.”

We don’t want … “Well, it depends on whether you’re twelve … if you’re 42 and whether you’re healthy…”. I mean it’s not … I’m not saying that people aren’t capable of managing these decisions. I’m just saying that in the meantime many of us can’t pay attention to them and because, because we can’t or we can’t or we won’t pay attention to them, we are … we increasingly are put in a position of doing worse. Because we are in charge.

HEFFNER: Why aren’t you willing to say …

GRUMAN: No.

HEFFNER: … flat out … many of us are not capable of making the decisions?

GRUMAN: I am.

HEFFNER: You are?

GRUMAN: I am … many of us are not …

HEFFNER: That many of us are not capable … okay … now what would you do about it?

GRUMAN: Well, I mean I think … I think you need to, to provide … start … if you look at, at the place closest to individuals … I think we need to provide individuals who can’t or struggle with making those decisions with, with personal guidance to help them walk through that.

Or to help them figure out with their caregivers what it is that they really want. But taking a broader look at this … I think we’re talking about a change in what we think about our role is relative to our heath care.

You know there’s a lot of information out there and a lot of kind of rhetoric around the empowered consumer and, yes, active, active patients. And, you know, we really haven’t seen that empirically when we measure the … when we look at the population in general.

Still, you know, less than a quarter of us feel like “Oh, yes, we really are in charge of our health”. The rest of us are somewhere along the lines of “Well, you know, I kind of know some things. And maybe I’ll do it, but I don’t think I know enough to really take care of myself under conditions of stress.”

So, in a … the, the American public is not yet at the point where it really recognizes what’s at stake in its own participation in its care.

Now, I think the really critical thing is that we can exhort the, the American population all we want to be engaged and participating consumers in their healthcare. But when we are met by physicians and nurses who had little interest in our participation, are not willing to support us or work with us … when healthcare institutions are not set up to provide the kind of guidance and support that we need … this is a cultural change that’s going to take more time than we thought.

This, this tail, us patients, are not going to wag that healthcare institutional dog.

HEFFNER: You don’t think we’ve got that power now rather than in the long run.

GRUMAN: Well, I’ll tell you … you know, my experience … you know I’m a person who’s been sick a lot. I’ve had three cancer diagnoses and a really bad heart condition. And my experience, as a patient, has, has shown me that when I’m a … when I really am a patient … I don’t have time to be politically active. I don’t have time to be socially engaged in, kind of, changing larger social norms.

And when I’m not a patient, I want to do other stuff. You know. (Laugh) So, and this is coming from someone …I, I have devoted my, my, my career to these issues. To making sure that people can understand this and, and have the support that they need to, when they’re sick. And when they’re well to make their right decisions. But I’m very well aware of the reality that most of the American public is just not that interested in their health.

You’ve got to take the kids to karate, they want to eat dinner, they’ve got a report, it’s Little League, whatever, they gotta take care of their Mother. You know, we’ve got other stuff to do. I mean health is a proximal goal, we want to be healthy because we want to do other stuff. And so most of us would like to skip over fiddling around with our healthcare in order to do the other stuff.

HEFFNER: It sounds as though … almost as though you’d like to go back to the old paternalistic doctor-patient pattern.

GRUMAN: No. I think when, when you said, “Well why don’t you just say … you, you don’t want commercial advertising.”

What I’m trying to do is, is to say “Listen this is the situation that we have. We gotta deal with it.” I can want it to be different, I can want there not to be, you know, direct to consumer advertising. But that’s not going to happen.

What is going to happen is that we are going to not realize our … the potential of medical advances to improve our health unless we are able to change things. And we can’t change these things alone.

We’re not necessarily inclined to do so. Many of us don’t know that we have to do so. We, we encounter difficulties all the way along the line. Because our physicians and our, our hospitals are not particularly interested in us, in us taking more of a role in our health.

I mean … I feel like, you know, the situation … we’ve been dealt these cards. We patients, right now and the, the difference between now and ten years from now is that the medical technology will be so much better. That so much more of the things that we need to do in order to take advantage of it will be ours …we’ll be us dialyzing ourselves at home. And us infusing our chemotherapy drugs at home.

We have to get our act together on this and we need some help doing so.

HEFFNER: Two things, though. One I beg to differ with you because we have seen in our own time the proliferation of the advertising campaigns, the permission for the drug companies … I mean we said “Yes”, we can say “No”.

You say, “Well, are you suggesting that we’re too far gone? The vested interests are so entrenched now that we’d never be able to go back to the time when we didn’t permit prescription drugs to be advertised the way they are today?”

GRUMAN: I think it probably will be a great thing for prescription drug ads to be curtailed. Just like I thought it was a great thing when cigarette ads were curtailed.

HEFFNER: MmmHmm.

GRUMAN: I think that that requires a concerted effort on the part of a lot of advocacy groups. I was part of the, of the tobacco ad work. And I know the army of people that it took to make that happen. I don’t see the army rising up and saying, “Oh, we don’t want those … those drug ads.”

HEFFNER: Okay, what is your army, which has to rise up, going to do about living in a society where all of these inputs are present. As confusing as they are. How do you take command of your own medical destiny when you’re confronted by the world of the advertiser?

GRUMAN: Are you asking “what do you do as an advocate? Or what do you do as an individual?”

HEFFNER: Well, I’m asking what can be done?

GRUMAN: What can be done?

HEFFNER: You pick it.

GRUMAN: Okay. I, I think that, that the … a recognition of the demands that are placed on individuals right now … recognition by health professionals and health institutions would be really helpful.

I mean and, and there are some very simple things that can be done in terms of telling people what the expectations are, what it is that they need to do in order to get safe, decent care.

HEFFNER: All right, what do I need to do?

GRUMAN: Well, for example, when you go to the … when you go to your doctor, does you doctor give you a piece of paper that says, you know, here’s, here’s who works here, if you have a problem with this, call this person. Here’s how we handle medical tests. Here’s where you go if you need care after hours. Here’s how we deal with, you know, emergencies in the practice. If you need to see me right away …this is where you … is all of that information available to you?

HEFFNER: Sure and I don’t read it.

GRUMAN: They actually give it to you because, you know, in most places in this country people don’t have that information …

HEFFNER: Hospital?

GRUMAN: No. Not in hospitals and not in, not in medical practices. Just the very basic things that would allow people to say, “Okay, well, if I had this I know how to do all of these things.”

Very simple. Very straightforward. You know … another very simple thing and I, I don’t mean to minimize how complicated this is, but I’m, but I’m trying to talk about … look at just how, you know, in, in some ways we don’t use even the wonderful technologies that are available to us right now because we can’t kind of get our arms around what it is that we’re supposed to do.

And another thing is, you know, many people go to the doctor and the doctor … and they have a conversation with their doctor and then, and then they leave and they’re not sure, really, what was the drug for and how are they supposed to take it and are they supposed to take it like … and are they supposed to be moving around or staying still and how …

Because they don’t ask questions because they figure if the doctor had wanted them to know, the doctor would have told them. And this is … for many people this is leftover from a previous era. This is from the era when, when, when physicians were kings and queens. For many people this is cultural. This is just something that just hasn’t been part … where you have a kind of an ongoing partnership relationship with your physicians … just has not been part of the way that they see the world.

And, and some people are too ill. Some people just, you know, feel intimidated. There are many reasons why people don’t ask questions. But, but the physician is expecting that if you don’t understand, that you’ll ask a question.

Well, so how do you, how do you make just something as simple as that part of the expectations that we have and the expectations that physicians have that we’ll ask … you are expected to ask questions if you don’t understand and the doctor will respond to you … it’s okay.

For, for many people the interaction is that kind of granular and that, that simple. You know we are in the midst of this large healthcare reform discussion which in, in reality is health insurance reform discussion.

And people are all kind of taken by these large ideas of … you know, I’m not going to get this care, someone else is going to make choices for me and all this kind of thing.

But, but for most of us … first of all most of us are awfully well most of the time and we don’t have that much experience with our doctor, that we forget from time to time. Thank you very much.

But, but secondly what … (laugh) … what really is the, what really is the experience of being ill. It’s a very personal and intimate experience and this relationship that you have with your doctor and the things that you say to your physician are private and they’re personal and it’s an, it’s … it’s the small interaction.

We don’t … and it’s that lens through which the American public sees this big world of healthcare reform. It’s no wonder that the discussion is kind of all over the place. At least the discussion that the public is having. Because, because healthcare itself is so technical and so complex and our experience of it … for most of us … is just really very straightforward and intimate and it has to do with my knee hurting. So …

HEFFNER: You think … we have a minute left, or so …

GRUMAN: Okay.

HEFFNER: … you think you’re going to be able to make progress along those lines.

GRUMAN: I think that the American public is incredibly resilient. I think that technology, you know, the online technology … the electronic side … is making a really concerted effort to make this happen.

I think that eventually people are going to start asking questions … as younger people who, kind of haven’t grown up with that kind of reverence for authority are going to start asking questions.

I think that this is a cultural thing that will happen over time. And like most cultural changes it won’t happen in the way that we expect it to happen, but it will happen. And my concern is while it’s happening I don’t want people to be left behind. I think that this is the kind of change that will take place over 25 or 30 years.

HEFFNER: Well, I think, Jessie Gruman, that one way to advance on it … is for everybody to read The Experience of the American Patient, your little book that you’re going to elaborate upon, I know, on “Risk, Trust and Choice” because it’s brilliant. And thank you for joining me again on The Open Mind.

GRUMAN: Thank you, it was my pleasure to be here.

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.”

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.