Learning from patients on a speaking tour

One year ago, my book, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests, was published. My goal in this last year has been to travel around the country and talk about the book and its message of advocating to improve your health. I planned a 48-city itinerary where I’d crisscross the U.S. from Massachusetts to California and back. I’d speak at bookstores, libraries, nursing homes, universities, and community centers.

What I didn’t anticipate was that this speaking tour would turn into a listening tour.

From Boston to Los Angeles to Lexington to Cincinnati, people told me about their experiences with health care. Some, like 62-year-old Annie from San Francisco, thought of themselves to be “e-patients,” or empowered patients.

“I have a rare rheumatological illness that very few doctors have encountered,” she told me. “I bring research articles and educate my doctors.”

Others avoid doctors, like Janet, a 48-year-woman from St. Louis who believes in “prevention, prevention, and prevention.” However, like many others I met, she sees health care providers nearly every week because she’s a caregiver to her elderly parents and her three children.

Over 2,000 people shared with me their frustrations with doctors, insurance companies, hospitals, and the health care system. I listened and learned.

Here are the themes that emerged:

People don’t know that they have options, especially when it comes to saying no. They are used to doctors telling them what they need; they are surprised when I mentioned that patients always have a choice to NOT get a test or NOT take medications. Few interventions are so emergent that patients need to obtain them immediately. Watching and waiting, discussing it further with the doctor, and obtaining a second opinion are reasonable alternative.

People want to please their doctors. In general, people like their doctors. Many feel they have to do what the doctor wants out of fear of displeasing them. “I lie and say I take medications I can’t afford,” 75-year-old Tony from San Antonio said. Others expressed their need for doctors to support their decisions. “Give me real choices and mean it,” says 38-yea-old Teresa. “Don’t judge me as being non-compliant just because I have a different value system.”

People don’t want more care — they want right care. People recognize the harms of overtesting and overtreatment, and know that more care isn’t always better. They know to be wary of industries with ulterior motives. “Drug companies and insurance companies aren’t operating out of the goodness of their hearts,” says Joseph, a 55-year-old from Providence. “There’s a lot of money to be made money from health care.” They also fear rationing, and caution that less isn’t more either. What they want is the right care, without commercial interests getting in the way.

People don’t expect perfection, but they demand transparency. They know that doctors aren’t omniscient; they just want them to share what they know. Uncertainty is fine, as long as they are told the truth. Also, people accept that doctors are human and that medical errors occur. They don’t aim for retribution, but they do want disclosure of the mistake and to know that the doctor is committed to addressing it.

People want more information to choose doctors and hospitals.“It’s disgraceful that I can find all types of information on choosing a coffee shop but I know next to nothing about my doctor,” 35-year-old Jenny from Cincinnati says. People want to know about their doctors, not only their credentials, but also any financial conflicts of interests, their values, and who they are.

People know that hospitals aren’t hotels. They don’t expect valet parking and 3-course meals, but they do want to be treated with respect. If they’re cold, they want a blank. If they’re thirsty, they want some water. Without compassion and addressing basic human needs, marble staircases and fancy MRIs are worthless. The same goes for doctors’ offices. Forget the fancy carpeting, but find staff who treat people with humanityand dignity.

People will wait if they get what they need. The dogma based on patient satisfaction survey results is that higher wait times leads to unhappy patients. However, the people I spoke with are unhappy not because they had to wait, but because they did not get what they expected despite the wait. “I waited two hours, and the doctor just spent five minutes with me,” said 49-year-old Sophie from Plymouth. Studies show that patients are interrupted in about 12 seconds; it’s no wonder people feel ignored and not listened to!

People aren’t lazy when it comes to their health, and don’t always want the quick fix. Most people don’t want to go to their doctor at all, and prefer to find ways to improve their lifestyle and prevent disease. The popularity of diet and fitness books is case in point. Many do not want “the easy way out” in the form of drugs or surgery, but would rather discuss fitness, diet, and use of alternative therapies with their doctor. “It’s my doctor who doesn’t want to discuss these therapies with me,” says 22-year-old Sandra.

People know that the current system is unsustainable. No matter the politics, people saw the health care system as being broken, and all of them as victims — and future change agents. “It’s just like the environment: there are finite resources,” I heard over and over. Since “free” and “cheap” weren’t synonymous with good care, people are willing to pay out of pocket for better value (as long as it doesn’t bankrupt their family). They are willing to share in the cost to society, because they recognize they already are.

People crave connection and caring. They want face-to-face interaction with “their” doctor. They want to be listened to and heard. Knowing their medical history is only the start; they also want their doctors to understand and connect with them emotionally, physically, and spiritually. This requires a sustained relationship; people do not want to go to “minute clinics” or use smartphone apps to access their doctor, but rather long for a long-standing relationship with an accessible, trustworthy provider.

By no means is this list meant to be exhaustive or intended to represent every one of the individuals I met. The very nature of health care is that it is personal and individual. These findings represent the thoughts and wishes of a broad spectrum of people across the U.S. They challenge conventional wisdom when it comes to what is needed in health care. For example, the rise of urgent care centers and smartphone apps should be seen as failure, not progress. Similarly, reducing wait times or adding fancy office furniture is not the fix for patient dissatisfaction.

Reform proposals tend to target policy changes that become mired in rhetoric and statistics. What people want is more basic, and more achievable. Doctors need to be transparent and honest with patients. They need to move away sick care towards health care. In the words of the great humanist and cardiologist Dr. Bernard Lown, we need to “do as much as possible for the patient, as little as possible to the patient.” Medical students need to learn shared decision-making and integrated care. Patients — people — should be part of every health care debate. Ultimately, we must restore medicine to being a caring partnership that prioritizes basic human dignity and respect.

Leana Wen is an emergency physician who blogs at The Doctor is Listening. She is the co-author of When Doctors Don’t Listen: How to Prevent Misdiagnosis and Unnecessary Tests.  She can also be reached on Twitter @drleanawen.

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  • Suzi Q 38

    “People know that the current system is unsustainable.”

    How about the specialist’s salaries over the long term are unsustainable.

    That being said, Dr. Wen received some interesting feedback.
    I also want to add that as a patient, I want more say as to what is ordered for me, and how much it will cost.

    I have asked doctors if they know the prices of the various MRI’s and other tests. The doctor usually looks at me as if I am crazy to ask.
    I am usually told something like this: “You shouldn’t care about the money, as you have PPO insurance.” I have nicknamed my insurance “the gold card,” as the medical staff finds out I have it and wants more tests and referrals. I have gotten rid of a couple of doctors prone to this practice.

    I am a responsible spender. I have been all my life. If it is really necessary, I will go get the tests. I just like to “shop around” first.

    This includes “shopping around” to find doctors that are more caring, good at what they do, confident, and don’t order a slew of unnecessary tests.

    This isn’t just limited to doctors. My daughter’s dentist (a cousin) referred us to a specialist for her TMJ. She grinded her teeth at night, and experienced pain during the day. The specialist ordered us a mouthpiece for her to wear at night that cost over a grand. It didn’t work and didn’t fit right. Next, he ordered another mold for another mouthpiece and it cost another $700.00. He saw the “fool” in me. I actually believed him. After all, he worked at a well-known university as a professor at the dental school.

    After that didn’t work, he suggested jaw surgery for my 14 year old.
    He wanted me to see the oral surgeon THAT DAY. I nicely told him I had to think about it and get another opinion. He got red and angry. He said the oral surgeon was waiting upstairs for our consultation and I was being difficult. I told him: “Have a nice day,” and walked out.

    Two weeks later, he wrote me a scathing letter.
    He pointed out how wrong I was not to follow his recommended course of therapy (surgery) as the solution for my daughter’s TMJ. He actually thought that I should have returned and allowed him to continue to treat my daughter.

    I wish I was stronger, older, and wiser back then to save the letter he wrote me. It would have been fair to give him a bad review on one of the dentist’s sites and quote the letter.

    Anyway, I went back to my cousin (our regular dentist) and told him what happened. He was so angry, he told me to never go back. He said that he never referred another patient to him, and he ordered a mouthpiece for my daughter…a much cheaper one, for $400.00.

    The cheaper one worked.
    True story. It is hard to make this stuff up.

    • JPedersenB

      Very sad story but unfortunately, too common….

  • Suzi Q 38

    Thank you for commenting.

    You are right about the new trend for doctors marrying doctors. I think it is great.
    There were more and more women over the last 30 or 40 years in medical school, residency, and whatever, so why not?
    It was bound to happen, as so many physicians spend most of their waking hours at work.
    They would also be understanding about each other’s time spent at the clinic or hospital.

    I am curious about who is caring for their kids, and Whose career is primary when family needs have to be met.
    I remember waiting to speak with a physician at his office when his wife called. They were arguing as to who was picking up dinner that night, LOL.

    He didn’t need to explain to me, but he explained what her profession was, and that he was proud of her, but sometimes he needed a wife and she needed a husband who would happily make or pick up dinner…..LOL.

    When you like working and pull in that kind of money, something’s got to give…
    Be happy.

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