“Patients at Front and Center” & Other Dispatches From Stanford Medicine X #MedX

I have a confession: I was anxious about attending this week’s Stanford Medicine X conference. While I’m hardly anti-science, I advocate for the return of listening and a refocusing on the art of medicine. I write regularly about the low-tech revolution to healthcare reform—and here I was about to speak at a conference that’s “the intersection of medicine and technology".

My fears turned out to be unfounded. Rather than being a tech-fest, Medicine X sets itself apart from all the hundreds of medical conferences I’ve attended because patients are front and center. Patients formed the advisory panel; patients presented during every session; and, in fact, patients were the VIPs seated prominently at the front of the room. As multiple attendees noted, when there was a question, everyone turned to the patient—not the physician—for the answer.

Halfway through the conference, I had a realization: isn’t this how every medical conference should be? In fact, isn’t this how medicine is supposed to be, with the patient as an integral partner—and driver—of healthcare?

The three days of Medicine X were filled with dramatic examples of this. E-patient and cancer survival Liza Bernstein discussed the importance of dignity in healthcare: “It’s invisible, but just as important to us as oxygen.” Marble staircases and fancy furniture can’t make a good healthcare experience if respect and empathy are missing. “No matter how dire things are, you can’t let your dignity be taken away,” she urged.

Sam Gordon, an e-patient with terminal pancreatic cancer, shared his goals in health. “When the outcome is known, when curing isn’t possible, doctors have to heal,” he said. “My doctors are comfortable with ‘scientific time’, but how about let’s talk about my pain?”

There were many poignant moments when people shared their stories. They are reminders that in the often-sterile and detached environment of healthcare, it’s OK to show emotion. Emotion allows us to bond. Designer Amy Cueva contends that emotional intensity can be indicators of unmet need. “You must pay attention to pain, frustration, and anger,” she said. Our responses to the many authentic, emotional voices are testament to the critical importance of the story.

Both patient and providers discussed how the root of so many problems is miscommunication and lack of understanding. Stories help us connect, inspire, and heal, and Medicine X provided the venue to share our stories. It offered the space for disparate groups to break down our silos and work towards a mutual understanding.

Towards the end of the final day, I had another realization. I looked around the table I was sitting at. There was another provider, two patients, a hospital administrator, a software developer, and a researcher. We were attending the same sessions and participating in the same discussions—we were literally, in Katie McCurdy’s words, walking in each other’s shoes.

At the end of Medicine X, I feel invigorated. I’ve met some amazing advocates in the U.S. and internationally who are working towards the aim of participatory medicine and patient-centered care. I’ve listened to many stories and shared my own. 

More than anything, I am thinking, what an honor it is to be a physician! As Jason Albrecht says, what a great privilege it is indeed to “walk alongside, to guide, and to follow our patients.”

Goldilocks Medical Care: Not Too Little, Not Too Much….

In my last two blog posts, I discussed the harms of a new epidemic: too much medical care. We also don’t want the opposite, of enough care care. In fact, much of the driving force leading to overdiagnosis and overtreatment is this fear of rationing.

So what can you do to ensure that you obtain just the right amount of care?

It isn’t easy—if it were, if there an algorithm that would give us the answer, then we wouldn’t have the Goldilocks problem (“Is it too little? Too much?”).

Here are 5 suggestions that may help:

First and foremost, work in partnership with your doctor. The most critical key to getting good medial care is a trusting relationship between you and your doctor. This is not to say never question your doctor; but rather, develop a relationship of mutual respect such that you are the expert when it comes to your body, and the doctor is the expert when it comes to medicine.

Second, make sure your doctor listens. Study after study shows that the patient history will reveal the diagnosis in 80% of the cases, without the need for any tests or further interventions. If your doctor orders tests instead of listening to your story, that leads to unnecessary testing—and potential misdiagnoses. Prevent this by telling a good story, and making sure it’s heard.

Third, ask about your diagnosis. Understanding what you have is key to figuring out what should follow. Before you get any tests done, ask your doctor what he thinks you might have. This gives you some idea of what tests may be necessary, and also focuses your doctor to remember the important tests and have a justification for tests ordered.

Fourth, ask about every test done. Every single test has risks, so make sure you understand why each test is done. Ask about the risks. Ask about how it would change management: what happens if it’s negative? What happens if it’s positive? And, importantly—what happens if nothing is done at all? This helps you gauge how emergent (and also how necessary) a particular test is at this point in time.

Fifth, do your own research. This is particularly true when it comes to treatments. Look on the Internet and ask your friends and family. Be aware that not all information is equally credible, but at least this helps you formulate questions to ask your doctor. It might also help to look up your doctor and see if she has conflicts of interest that you may not be aware of: information about drug company affiliations, for example, can be found online. Write down questions, and ask them.

None of these suggestions are foolproof. These five steps can help begin the process for you and your doctor to work together to identify the right tests and treatments for you. If you have other thoughts or ideas that work, please write your comments below.

Where to Begin the Conversation on Overdiagnosis

One of the many takeaways from the recent Preventing Overdiagnosis Conference is that it’s hard for doctors to tell their patients that too much care is bad.

For so long, the rhetoric has been about the danger of too little care. Newspapers brim with stories of death from missed diagnosis and lack of access to care. TV shows glorify the detective-doctor who doesn’t give up and persists on ordering test after test in order to solve an esoteric case.

Over the last decade, there is mounting evidence illustrating the harms of overdiagnosis and overtreatment. Risk factors have been turned into diseases, and diseases are being created for the purpose of selling medications. Dartmouth’s Dr. Lisa Schwartz told the story of how GlaxoSmithKline created a new disease entity—restless leg syndrome—to find a new use of an existing medication that was going off patent. American Cancer Society’s Chief Medical Officer Dr. Otis Brawley discussed how hospitals offer “free” screening tests knowing that they will lead to false positives, thus creating a market for further testing and more care.

Who is to blamed for “selling sickness”? No doubt, big pharma and hospital corporations are culpable. They feed into patients’ fears. Maybe your doctor hasn’t heard of this “new” disease. Maybe she has financial incentives to prescribe you the rival medication. Why not take control of your health, and heed the advertisements to “ask your doctor about” the latest medication and the full-body CT scan?

There is another party that is just as guilty in the crime of disease mongering. It is doctors who are complicit with drug companies by speaking about “new” diseases and prescribing unnecessary medications. It is doctors who are complicit with hospitals by ordering unnecessary tests. It is doctors who instilled in our patients the blind faith in technology and the boundless optimism in treatments.

Combating overdiagnosis must begin with doctors acknowledging that we are part of the problem. The foundation of medical care is trust, and this trust is being eroded by financial incentives and conflicts of interest. We need to address this and reassure our patients that we are fully on their side.

Just as our profession stepped up to address critical issues such as access to care and medical error, we must have the courage to admit our contribution to the growing health threat of too much care. This will not be easy—but we must have the courage to reinstill trust, and do what’s right by our patients and our society.

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This article previously appeared in and reposted with permission from British Medical Journal's blog.

“Winding Back the Harms of Too Much Care”

I just returned from a thought-provoking conference at Dartmouth. Entitled Preventing Overdiagnosis: Winding Back the Harms of Too Much Care, and co-sponsored by Dartmouth University, British Medical Journal, Consumer Reports, and Australia’s Bond University, the conference raised many points that are rarely discussed.

Here are some of my favorite quotes:

“Risk factors have been turned into diseases.” Dr. Steve Woloshin discussed the absurdity of labeling us all with a “pre-disease”: doesn’t everyone all have some version of pre-hypertension, pre-diabetes, or even pre-death? More insidious is the promulgation of testing people who have no symptoms, despite of evidence of harm. American Cancer Society’s Chief Medical Officer Dr. Otis Brawley discussed how hospitals offer “free” screening tests knowing that they will lead to false positives, thus creating a market for more testing and more care.

“Diseases are being created for the purpose of selling medications.” Dr. Lisa Schwartz told the story of how GlaxoSmithKline created a new disease entity—restless leg syndrome—to find a new use of a Parkinson’s disease medication that was about to go off patent. Roy Moynihan showed his class spoof video of a new and dangerous epidemic.

“Ordinary experience is medicalized.” Dr. Allen Frances, a psychiatrist and Chair of the DSM4 task force, rails against the psychiatric profession for labeling people with diseases they don’t have. If you are grieving two weeks after the death of a spouse, you have depressive disorder; if your child is inquisitive and energetic, he has attention deficit disorder. Of course, watchful waiting is never the solution, but fortunately, there is a new and expensive medication for this disease.

“Language corrupts thought.” A diagnosis of “carcinoma-in-situ” brings up scary connotations and fuels the desire for aggressive treatment. However, our technologies have gotten so advanced that we are detecting many early cancers that, if left alone, may never grow or harm the patient. The National Cancer Institute recently proposed a change in terminology for cancer, and other conference speakers proposed other disease definitions that should be changed.

“We are practicing faith-based medicine that ignores the harms and exaggerates the benefits.” It is well-documented that medical journals bias in favor of positive results, and that there are many financial interests to promote the newest, latest medication or treatment. Stories abound about people who survived because of early detection of disease and new, experimental treatment. However, there are also many stories of people who experience serious side effects and fatalities from overdiagnosis and overtreatment. These counternarratives need to be told, and evidence for harm needs to be published.

“Overdiagnosis is a symptom of the same problem that drives underdiagnosis and misdiagnosis.” In the discussion of overdiagnosis, it’s important not to forget that there are other pressing issues too, including medical error and lack of access to healthcare. The medical industrial complex is at fault here, too, and doctors need to assume our social responsibility and moral imperative to do what’s best for our patients.

“More care isn’t better care; it’s just more care.” In the words of my hero, cardiologist and Nobel Peace Prize winner Dr. Bernard Lown: “Overtreatment harms patients, thereby negating the first principle of doctoring, primum non nocere.” Our goal in medicine should be to do “as much as possible for the patient, as little as possible to the patient.”

There will be many challenges ahead for conference attendees, including the difficulty of framing and discussing the problems of overdiagnosis and overtreatment. Much of this conversation will continue at the Lown Institute's Right Care Alliance conference in December. My next few blog articles will address these difficulties. Stay tuned, and please feel free to contribute your thoughts below!

"Don’t Just Do Something, Stand There!"

My last blog post discussed why medicine is so intolerant of uncertainty and inaction, and how this has resulted in a culture of overtesting and overtreatment.

All of us as patients and doctors are at fault for feeding into this system of waste and harm. However, there are some active voices of resistance. Here are some examples:

Dr. Jerome Groopman, internist and author of the excellent book, How Doctors Think, writes about how he teaches medical students to “don’t just do something—stand there.” Very few situations in medicine require immediate action. It may be uncomfortable to apply the tincture of time as a treatment, and many doctors find it easier to order a test than to discuss the pros and cons of the test with a patient.

However, we need to remember our first principle, primum non nocere: first do no harm. Dr. Abraham Verghese writes about the importance of restraint and self-awareness in his novel, Cutting For Stone. Here is the protagonist, a doctor himself, speaking about his father:

My father, for whose skills as a surgeon I have the deepest respect, says, "The operation with the best outcome is the one you decide not to do." Knowing when not to operate, knowing when I am in over my head, knowing when to call for the assistance of a surgeon of my father's caliber--that kind of talent, that kind of "brilliance," goes unheralded.

Doctors: think carefully. Engage in thoughtful discussion with your patient, and decide together what’s best for him. Remember that no testing and no treatment may be the best course of action.

If you have to do something, consider a novel treatment that Dr. Aaron Stupple coins “a listening infusion.” During his internship, Dr. Stupple faced resistance when he questioned his supervisors on the necessity of costly tests and invasive treatments. As the most junior person on the team, he couldn’t override their decisions, but he could add his own treatment. He made it a routine to visit patients and talk to them, often staying hours after everyone else to finish his “listening infusion”. He didn’t obtain more test results, but somehow he knew more about his patients than anyone else. He didn’t give them a pill, but somehow his patients felt better at the end of the day.

This is what doctoring should be about. A recent study of resident doctors found that only 12% of their time was spent interacting with patients, versus 40% interacting with the computer. The doctor may find everything about a person’s laboratory tests, but nothing about her family or values. “Personalized medicine” and “patient-centered care” are hot buzzwords, but it’s not just about finding someone’s DNA and redoing the waiting room area. Improving medical care must begin with personalizing care to the patient and listening to her story.

We must bring back the art of medicine and the art of healing, and treat all of our patients with a “listening infusion”. Then, “don’t just do something—stand there”! Changing any deeply-entrenched culture is hard, but it can happen: one doctor at a time, one patient at a time.

When More Isn’t Better

It was the beginning of my third year of medical school. I had just started my first clinical rotation. My very first patient was Ray, a middle-aged man with pancreatitis.

I presented his case to the team. “What are Ranson’s criteria?” the attending physician asked.

My mind went blank. “Uh, I’m not sure,” I said.

“Next time, you’d better be sure,” the attending said. He turned to my colleague, who promptly gave the correct answer.

On that first day of medical training, I learned that “I don’t know” is not an acceptable answer. If you don’t know, look it up. Make it up you have to. Whatever you do, never admit that you don’t know.

Not surprisingly, doctors end up not tolerating uncertainty. In our high-tech era, this means more is done. A patient has seemingly vague symptoms, so the doctor orders some laboratory tests “just to get a baseline”. A doctor doesn’t know what’s causing the headache, so she orders a CT or MRI “just to see”. Medical students are rewarded for pursuing obscure diagnoses, so they order increasingly esoteric tests “just in case”.

This insidious practice has resulted in a culture of overtesting and overtreatment. Studies show that 30% of all medical care—at the tune of $700 million per year—is waste. Not only does this impose a heavy financial burden on society and on patients, it also results in avoidable harm. Every test has risks and potential side effects. A CT scan has a risk of radiation, for example, that may lead to cancer later in life. And one test often leads to another, even riskier, test.

Recently, my husband had an itchy rash on his arms. He mentioned this to a dermatologist friend, who recommended that he come into the office for a skin biopsy. I asked how the biopsy would change my husband’s management: regardless of what it showed, wouldn't he still use a steroid cream? Sure, the dermatologist said, but at least we’d have more information.

Nothing against our well-intentioned friend, but this is a case where more information isn’t better. Why get a biopsy—an invasive procedure with risks including bleeding and infection—when it wouldn’t change the management or the outcome? Yet, tests are done all the time to quench the insatiable curiosity inherent in medicine: we just have to know.

Here’s another common scenario. A young woman comes in with abdominal pain. She’s able to eat and drink and looks well, but has a pain in her belly that’s bothering her. Many doctors would order a CT scan of her abdomen to make sure there’s not something bad going on. But what is this bad thing—how likely is it? How does the patient feel about the risks of the test, versus the risks of watchful waiting? If she’s fine waiting, then why expose this young person to unnecessary radiation, when it would be just as reasonable to wait to see if she gets better the next day?

More tests and better technologies are not the solution to improving clinical care. In fact, we know that 80% of diagnoses can be made without any tests at all, but by carefully listening to the patient’s story. I’m an emergency physician, yet even in the emergency setting, it is rare that a patient requires one particular test, and that test must be done right now.

Here’s what to do instead. Doctors: talk to your patients. If you’re not sure, tell them. Patients prefer honesty to false reassurance. Instead of reflexively ordering a test, discuss the benefit of the tincture of time. Remember that our first principle is to “Do no harm”. I just met two doctors, Tanner Caverly and Brandon Combs, who started an educational initiative to encourage doctors-in-training to write vignettes of medical overuse. To them, and to a growing number of physicians including the Lown Institute’s Right Care Alliance (of which I'm a proud member), preventing overuse is an ethical imperative.

Patients: insist on being an equal and active partner in your care. Ask “why” and “how”. Why is this test ordered? How will this test change my management? Make sure you know your diagnosis. Assure your doctor that it’s OK if she is not 100% sure; you don’t demand certainty, but you do expect transparency.

It’s taken me nearly ten years to unlearn the bravado I acquired in medical training and to learn that uncertainty isn’t bad; more isn’t always better; and less can be more. As the great cardiologist and humanist Dr. Bernard Lown says, you should always feel better after having gone to your doctor. We need to focus on healing by teaching and practicing the art of listening, compassion, and kindness.

The Low-Tech Revolution To Healthcare Reform

Steve is a 52-year old father of four. Soon after losing his job as a carpenter, he begins to have sharp stomach pains. His primary doctor examines him for a few minutes and then sends him to specialists: a GI doctor, who performs an endoscopy, and a cardiologist, who performs a cardiac catheterization. Both tests are normal, but he develops an aneurysm and a bad pneumonia, and has to spend the next week in the hospital. His medical bill is over $75,000, and Steve has to declare bankruptcy—all because of tests he never needed to begin with.

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Sandy is a 46-year old grade school teacher who has been feeling unwell for a couple of months: she’s short of breath, feels tired all the time, and has a cough that wouldn’t go away. She goes to her doctor, who tells her it’s just a cold. Her symptoms get worse to the point she can longer go to work, and her doctor diagnoses her with depression and prescribes her some Prozac. That doesn’t help, so her doctor prescribes her Valium for her “anxiety”. It’s not until nearly a year later that she is finally diagnosed with breast cancer—cancer that, by then, has spread to her livers, her lungs, and her brain.

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Science has brought about many importance advances, but also contributed to costly, harmful, and dehumanized medical care. Of the $2.7 trillion our country spends on healthcare every year, 30%--over $700 million—is wasted on unnecessary tests and treatments. Two out of every three families who declare bankruptcy do so because of excessive medical bills. Overtreatment isn’t just expensive, but it’s bad care. As Steve experienced, every intervention—even a simple blood test—has potential side effects. This doesn’t mean to never get tests, but rather to be certain that the test or treatment is needed.

At the same time medical costs are ballooning, healthcare has become more fragmented and less coordinated. The idea of having “your” doctor is becoming a relic of the past, and patients are shuttled to more and more specialists who have their own incentives. And medical care isn’t becoming safer: according to the Institute of Medicine, 100,000 people die every year because of medical error. The number one cause of medical error is misdiagnosis, which is evident in Sandy’s case: if the diagnosis is wrong, then the tests and the treatment will be wrong as well.

 

Politicians and administrators have proposed many solutions to these current system ailments. They are all based on the premise that more has to be done. More checklists. More tracking. More accountability. More technology. While some of these efforts may be beneficial, there is a far simpler and more fundamental reform that is needed: for patients to tell their story, and for doctors to listen.

The story is a core element of all human cultures. We all know what makes a good story: it is personal; it engages emotion; it has meaning; it grabs your attention from the start. Understanding each other’s stories is the basis for establishing connection, relationship, and trust. In medicine, the story is key to sound medical care. Studies have shown that 80% of diagnoses can be made just based on the story alone. That’s better than any test or combination of tests!

Listening to your story is also a critical aspect of healing. If your doctor didn’t listen to you, how can you be sure that he understood what you have, much less how you can develop a trusting partnership? Yet, doctors are listening less and less. A 1984 study found that patients are interrupted after just 18 seconds. A more recent study found that patients now have just 10-12 seconds to speak.

Over the last year, I have traveled to 48 cities across the U.S. to talk to people about their healthcare. Nearly everyone had a story of how not listening led to a bad outcome. That’s how I met Steve. Like many others, Steve considers himself to be lucky to be alive, but is he so lucky? He feels no better after having gone to his doctors, and now has lost his savings and his home. He suffered complications from tests he never needed in the first place, and he has no trust that doctors will do the right thing for him and his family the next time.

As for Sandy, I know her well too. You see, Sandy was my mother. I was a medical student when she called me to tell me about her symptoms and how her doctor wasn’t listening. I knew that something was wrong. My mother was an immigrant who worked hard all her life, who never complained about anything. Yet, I didn’t know how to help her communicate with her doctor so that he would really understand the gravity of her situation.

It took me a decade—first as a caregiver to my mother, and then as a practicing physician and patient advocate—to figure out that the story is absolutely fundamental to medical practice. Indeed, it can save your life.

Imagine, how different would it have been if Steve started out his story to his doctor by talking about his financial concern and his recent unemployment, how it was making him anxious and have stomach pains. How different would it have been for my mother to say that she’d never sought medical care for anything, but now she was feeling so poorly she could barely get out of bed any more.

And how different would it have been if their doctors listened. Some argue that doctors don’t have time to do so. While doctors are under more time pressure than ever before, it doesn’t take any longer to listen—in fact, it saves the time that’s wasted instead on asking endless close-ended questions and ordering unnecessary tests. Others insist that these tests have to be done because of fear of malpractice. Yet, the number one cause of malpractice is lack of communication, and patients should not have to pay the price for doctors’ fear.

I wish I learned this critical lesson a decade earlier. Not a day goes by that I don’t think about how things could have been different if my mother and I knew what I know now. As a physician and medical educator, I teach my patients and my students that what will really change medicine isn’t the latest IPhone app or newest genetic test, but rather a return to medicine as a healing art.

This requires action by both patients and doctors. Patients, tell your story. Know what goes into a compelling story. Practice it before going to your doctor, then make sure your doctor hears it. Doctors, know that you have to listen. Not just type on your computer and nod your head, but really listen.

Ultimately, transforming healthcare doesn’t require more politics or more technology. Rather, it requires refocusing on the most basic part of ourselves—our story and our human connection. This revolution, the low-tech revolution, is the real solution to healthcare reform.