Patient inquisitiveness is the best way to reverse a lack of involvement in treatment decisions.

Excerpt from the program on September 30, 2011.

SHANNON BROWNLEE, M.S., Acting Director, New America Foundation, Health Policy Program; Author, Overtreated

 

I’m a reformed hope-pusher. Not dope – hope. I was a writer at US News and World Report for 10 years. I was the lead medical writer, and I wrote cover stories on all of the great medical breakthroughs that were often coming out of the NIH [National Institutes of Health]. I thought that what I was doing was really helping people. I was talking to readers, millions of readers, about all the great developments in biomedical research and all the great developments in medicine.

Then I came upon a story that in effect radicalized me and began my path to redemption. The story was about something called the PSA test. Many of the men in this room probably are well aware of the PSA test; it’s the Prostate-Specific Antigen test. It’s a blood test that’s used to screen healthy men for early signs of prostate cancer. The PSA test now is quite controversial and is in fact kind of a poster child for not such a great way to try to help people avoid dying of cancer. At the time, it was considered the new, great thing that was going to reduce prostate cancer deaths.

I reported a story that said maybe it’s not such a great test. There was no good evidence that the test was actually reducing the death rate from prostate cancer, but there was abundant evidence that the test was leading a lot of men to get treated unnecessarily for a cancer that would probably never have bothered them. That’s probably a radical notion to many people in the room, but there were real problems with the test, and the treatment had a lot of downsides. Incontinence and impotence: More than half suffered these two or at least one or both of these side effects from the treatment.

It was a pretty critical story, and my editor said, “I don’t believe you,” in effect. I’d written all these cover stories, I’ve won all these awards for my magazine, and I write a story that’s critical of something that he thinks is the right thing to do. I’ve reported it very carefully, and he slashes the story by two-thirds and basically says, “I don’t think this is right.” That’s what made me think, “Wait a minute.” It took a while for me to start to realize that I was part of a very big machine, an industry. My job as a reporter at US News and World Report to some degree was to act as free advertising for health care. That’s what I was doing. I was really good at it. I couldn’t do it anymore, I found I couldn’t push hope anymore. I needed to push more accurate information, and I found I needed to be more critical of medicine.

When I started my book, in 2003, people would ask, “What’s your book about?” I said, “It’s about unnecessary care,” and they looked at me like my hair was on fire. “What kind of idiot are you? We know the problem is that people aren’t getting enough care.”

That was the framework in which we thought about health-care reform pretty exclusively. I’m very gratified to say that the problem of unnecessary care has really come into its own. It’s now considered a part of the problem. It’s about how we fail to clue patients in to what’s really going on. I want to suggest a new way of being a patient, and in fact a new way of having an interaction with physicians. A new way for physicians, as well. It’s a quiet revolution in medicine, and you may have never heard of it, but at some point it will be a regular part of your interactions with your physicians.

How many [of you] have had an elective procedure? An elective procedure means that there are multiple ways to treat the conditions. Knee replacement is an elective procedure, bypass surgery is an elective procedure, a facelift is an elective procedure. It’s not necessary, but it’s one of multiple ways you can treat something. Most surgeries are elective procedures. PSA tests, mammograms – elective procedures. Elective procedures account for about 25 percent of what we spend on health care. Only 15 percent of what we spend is what’s called evidence-based medicine, effective care. That means that everyone who has the condition needs to get that particular treatment. You have a heart attack, you need to have aspirin or beta blockers or both upon discharge; this is sort of the classic [example]. You go into the hospital, you’re elderly, you need a pneumonia vaccine. Only 15 percent of the money that we spend is on clearly evidence-based effective care.

If you’ve had an elective procedure, you’re supposed to give something called informed consent. It’s a legal document; it lays out the risks, and signing it says you understand what the risks are and you still consent. It’s supposed to be a conversation between you and the provider, or you and multiple providers, where you really discuss and understand what the potential upside and downside is of the procedure. In the history of medicine, informed consent is a relatively new idea. If you go back to the time of Hippocrates, he introduced what was then a radical notion: That disease was caused by environmental factors, not divine punishment. That meant that treatment could be physical rather than spiritual. Today, physicians take something called the Hippocratic Oath. The standard way of translating is: First, do no harm. But the actual phrase in Hippocrates’ time was “physicians must do good and do no harm.” Another legacy of Hippocrates that is part of medical practice until very recently is don’t tell the patient what’s going on. When my grandfather died of brain cancer, he died never knowing he had brain cancer. The family and the physician decided that it was best for him not to know. This was thought of as part of the magic of medicine, and a lot of medicine until very recently was mostly magic; it was the belief in the physician’s power. Physicians had enormous autonomy and authority. 

Physicians have meant well all through history, but until very recently, a visit to the doctor was about as likely to cause you harm as to help you. In fact, I think the turning point came sometime in the 20th century.

The 20th century also saw this shift in the relationship between the doctor and the patient and this notion of informed consent, which is a real shift in where the power lies. This came out of a series of scandals in which physicians did unethical or harmful things to patients without the patients’ knowledge. One of the first cases was brought in 1917 against a New York hospital: A patient had a surgical procedure performed after she had refused the procedure. Justice Benjamin Cardozo concluded that every human being of adult years and sound mind has a right to determine what shall be done to his own body.

But here’s the thing: We know that patients in many, many cases don’t actually understand the first thing about the procedure. They don’t actually understand the first thing about the risks; they don’t actually know how small the benefits for many things are. They overestimate benefit a lot. They underestimate risk a lot. They’re not very well informed – and this is intelligent, well-educated patients as well as patients who don’t speak English very well. Just because you have a lot of education does not necessarily mean that you’re going to be well informed about your elective procedure.

So we know that patients are consenting to something that has been recommended, but the patient hasn’t really been engaged in the decision. We delegate a lot of decisions about what’s going to happen to us to this person who we know has superior knowledge, but who we also assume is going to make a decision that is in our best interests.

The other thing that we know is that different physicians have different opinions about what is the right thing to do for a different patient. If you have chest pains from angina, some cardiologists will do a really good job of giving you the right medications and really helping you control your chest pain through medication, and helping you understand what you need to do. You need to quit smoking, you need to get more exercise, know how to take your medications. All of these various things, changing your behavior, taking the drugs, can reduce your chest pain and reduce your risk of having a heart attack or a stroke. But other cardiologists will recommend right off the bat that you undergo an angiogram and that you undergo other procedures: maybe a bypass surgery, maybe a stent, maybe an angioplasty. If you have a hernia and you don’t have symptoms, some doctors will recommend that you repair it immediately, and others will say to wait if it isn’t bothering you: If it ain’t broke, don’t fix it. If it isn’t bothering you, we won’t subject you to surgery. Same condition, same patient, different physicians, different opinions about what the right thing to do is. If you have knee pain for arthritis, some orthopedics will recommend knee replacement right away; some will say, “Let’s do arthroscopic surgery,” which, by the way, has been shown not to be effective. Some will say, “Let’s try losing a little bit of weight,” “let’s try pain medication, and then if we need to, we’ll think about knee replacement.”

It turns out, when it comes to these elective procedures and elective tests like PSA and mammography and knee replacement and angioplasty, who you see is what you get. Patients often say, “What would you do, doctor? What would you recommend, doctor?” They don’t really get informed about what their possibilities are, what their alternatives are and what the trade-offs are in each of those alternatives.

I’ll bet that more than half the people in this room are tonsil free. Tonsillectomy was one of the most common surgical procedures when we were kids. It’s very interesting, because there was huge variation in what physicians thought about whether or not their young patients needed a tonsillectomy. The evidence for whether or not you ought to get your tonsils out was not there. It was nonexistent. It actually depended to a large extent on where you lived. Now we think, “That was then; now, medicine is scientific.” Modern medicine is scientific, and today, in fact, tonsillectomy is rarely done. It’s very easy to dismiss this as sort of a practice of a foolish, bygone era. But we are better at diagnosing disease, we have a lot more technology, we have CT scanners, we have ultrasounds, we have blood tests for diseases we didn’t even know existed 50 years ago, and we like to think that our doctors make decisions for us on the basis of sound evidence. But in fact, if that were so, why do we see so much variation in how patients are treated in different parts of the country, and in fact in different parts of California?

[A recent study funded by the California HealthCare Foundation on carotid endarterectomy found that] if you live in Santa Maria, which is near Santa Barbara, you’re four times more likely to undergo a carotid endarterectomy than if you live in Laguna Hills, which is in Orange County. If you live in Clear Lake, up in Napa, you’re three times as likely to undergo a carotid endarterectomy than if you live in Chino; and if you live in Modesto, you’re two and a half times more likely [to have one] than if you live in Los Angeles. Now, is that because patients need a carotid endarterectomy so much more often in Clear Lake, Santa Maria and Modesto? There’s no evidence for that.

I’ll give you an example from Berkeley: Women who live in Berkeley are 10 times more likely to have a vaginal birth after a cesarean section; 10 times more likely than women who live in Hanford, near Fresno. Is that because there’s something fundamentally different about women in Berkeley? No, probably not. Heart procedures, elective stents and angioplasty: once again, in Clear Lake [it] is 10 times as likely than if you live in Sonoma; if you live in Fresno, you’re nine times as likely to have angiography, and this is not being driven by differences among patients. It’s being driven by the fact that physicians in different parts of California have different practice patterns.

What does this mean for you, as patients? For some procedures, a very low rate in a region might mean you’re not getting care that could help you. If you live in Los Angeles, the rate of knee replacement – rate meaning how many knee replacements per the total population in the area – is remarkably low. It’s possible that there are people in Los Angeles who could actually benefit from knee replacement and would want it, if they understood that. But they’re not getting it. There are also probably people in Los Angeles who are getting knee replacement who really wouldn’t have wanted it if they’d really understood what their alternatives were. But by the same token, if you live in Lindsay, near Bakersfield, you have a much greater chance of having an angioplasty or a stent than in other parts of the state. That suggests that there are people who are getting these procedures that, if they had understood what the risks were and what the benefits were, they would have chosen not to do it. In other words, informed consent is broken. They were not well informed.

This has real consequences for us as patients. About three years ago, a 43-year-old woman had a whole series of events happening in her life. She’s a Brazilian immigrant, she came here to go to college and instead she got pregnant, had three kids, got married and never went to school. Her oldest son was about to go off to college, and she was studying to become a nurse’s aide, and her husband was beating her. She was having panic attacks. She was finding herself unable to breathe, feeling like she had chest pain. She knew she was having panic attacks, but she was scared. So she went to the emergency room, which checked her out and said, “There’s nothing wrong with you,” and sent her to her primary care physician. Her primary care physician sent her to a cardiologist, the cardiologist checked her out and said there’s nothing wrong. She ended up going back to the emergency room again and she went back to the cardiologist, and the cardiologist said, “Just to be safe, let’s do an angiogram. Let’s look at your heart.” So she went in to have the angiogram: she was semi-awake, she’s a little bit drugged and she could see on the screen that her heart was as clean as a whistle.

The doctor said, “See, you’re absolutely fine, everything’s OK,” and as he’s withdrawing the catheter out of her heart, he perforates her. It means he makes a hole in her coronary artery and her heart stops. She has to be defibrillated nine times. For the physicians in the room, they know what that really means; for the non-physicians, think ER with the paddles to get her heart going again, to get it beating in a regular rhythm. Nine times. She said to me, “You know, everybody thinks that when you die you see a light at the end of a tunnel,” she said, “No, when you die it’s really dark and then when you come back to life, it’s really light, because there’s this light over your head with all the doctors leaning over you.”

Now she really does have heart disease. She takes 13 different medications and, as you can imagine, one of them is an anti-depressant. She can’t walk up stairs, she can’t walk the dog, she can barely run her life. I think she was an inappropriate patient, physicians who’ve looked at her records think she was an inappropriate patient. She shouldn’t have had it. But let’s say she was appropriate. This might have helped her. She had no idea what the possible downsides were. She was not an informed patient. She was a passive patient. She was a scared patient. She, I suspect, is a patient that every physician should dread: not engaged, passive, not really paying attention, but also she was the kind of patient that none of us want to be, because she didn’t ask the critical questions and her physician did not really inform her very well.

It may seem that I’m beating up on cardiologists, but it’s a really convenient [position] to be able to talk about because there’s a lot of stuff going on in cardiology that’s not so good. It turns out that when patients are really informed, they make really different choices. We know this from trials, we know this from studies: Patients who are really informed tend to be more conservative. The evidence suggests that they are 20 percent less likely to choose an invasive option when they really understand.

How can we make sure that we as patients really understand what tradeoffs are involved in these elective procedures and tests? How can medicine, as a profession, make sure that patients are really involved and engaged?

One way is to give patients access to information that they can understand. One way to do that is something called a patient decision aid: the patient decision aid is not a person, it’s a thing. It’s often a brochure, it can be web-based, it may have a video involved; it helps patients really understand what the tradeoffs are. That’s the thing that’s involved. The process that we need to be pushing for, requesting, is shared decision making. We need to be asking our physicians to share those decisions rather than delegating the decision to the physician. This is the revolution in medicine that I’m talking about.

One way to think of it is perfected informed consent, if you’re a lawyer; another way to think about it is the democratization of the doctor-patient relationship. Your physician may have access to patient decision aids, if not, you may be able to ask your insurance company for a patient decision aid, and if not, I’m not sure what you’re going to do, because they’re not as available as they should be. But the more we talk to our physicians and say, “I want to really understand, and I need the information in a way that I can understand,” some of your physicians will welcome you asking these kinds of questions and some will not.

But this is what we really need as patients; we need to have really good information. A new way of doing medicine and a new way of being a patient is that we need to ensure that we get all the care that we need and no more, we get the care that we want, and no less. One of the ways to do that is to start thinking about sharing those kinds of crucial decisions.