Care for the Neglected 20%

In this week’s “Shots” on NPR, I wrote about the barriers to care faced by patients with disabilities. Some of these barriers can be directly attributed to the lack of education healthcare providers receive about caring for people with disabilities.

Doctors' Ignorance Stands In the Way of Care For the Disabled

I was shocked to learn that though nearly 20% of the American population have a physical or mental disability that causes significant life impairment, studies show that less than 20% of medical schools have curriculum that discuss the needs of patients with disabilities. More than half of medical school deans report that their students are not competent to treat people with disabilities.

As someone who grew up with a severe and often debilitating stutter (see TEDxFoggyBottom talk where I discussed this in depth), caring for people with disabilities is a topic very personal to me. As a child, I had to visit the doctor several times a month for asthma attacks. When I had trouble getting out my words, doctors would ask my parents if I were mentally retarded. Sometimes, they initiated far more aggressive treatment because they thought my stutter was from difficulty breathing.

When I was a medical student, I recall an attending physician ordering a head CT on a patient who had a severe stutter just to make sure he wasn’t having a stroke. Had he listened to the patient for a few more minutes, he would have found out that this was how the patient always spoke, and that he was there for a completely unrelated issue. This is just one of many examples of how lack of understanding and training present a significant barrier to care.

In response to the NPR article, some readers have written about the burgeoning field of Physical Medicine and Rehabilitation. This is a much-needed specialty in medicine—but all doctors, nurses, and other healthcare providers need to be educated about how to take care of 20% of our patients.

I’d love to hear from you. What can we do to better educate healthcare professionals? Are there other areas that are neglected in medical training?

Are Medical Checklists Bad for Your Health?

Using checklists in medical care sounds like common sense. We’ve all heard the stories of the man who had the wrong leg operated on, and the woman who had a sponge left in her belly. Checklists are routine in other professions to standardize management, and we know they can prevent hospital infections and surgical error.

But can there be a downside to checklist medical care? Consider these two examples:

Scenario 1

You come into the ER after you dove to catch a softball. You’re pretty sure you have a bruised rib, but because you said the magic words of “chest pain”, you get whisked away to get blood drawn and then to get an EKG and a chest x-ray. You’re told this is all part of the “chest pain protocol”. But did you really need all of these tests done?

Scenario 2

You tell your doctor you’re tired and feeling run down. Your doctor does “routine blood work”, again following a checklist of things to look through: anemia, thyroid problems, and so forth. Everything is “normal”. The checklist is complete, so your doctor assures you that you’re OK—even though you know you’re not.

In my work as an emergency physician, I know that checklists can be helpful. They ensure complex procedures are done thoroughly and provide an extra assurance for safety. However, before undergoing the procedure or any treatment, you must first have a diagnosis. This diagnosis, and the subsequent treatment, needs to be personalized to you. A “cookbook” approach where you get the same recipe of tests and medications as anyone else will result in expensive, unnecessary care, and even misdiagnoses and harm.

Here are five tips to make sure you get the best, personalized care for you:

#1. Insist on telling your story. Studies have shown that 80% of all diagnoses can be made based just based on the story of your illness. Doctors have limited time to listen to your story, so you must make sure your doctor understands why you’re there. Don’t just say that you have “chest pain”; explain when it started, what you were doing, and how it felt. Write down key elements. Practice until you can tell it in 30 seconds or less. Then tell it to your doctor the moment you see her to make sure the doctor focuses on your individualized story.

#2. Give open-ended responses to close-ended questions. If you suspect that the doctor is going through a checklist of yes/no questions, try to get her to focus on you by adding personal elements to your answers. If you’re asked, “when did you start feeling so tired?”, don’t just say “two weeks ago.” Add that you’re normally very energetic and run 5 miles a day, but for the last two weeks, you can barely get out of bed to work. These answers help provide context to who you are.

#3. Ask about your diagnosis before you consent to tests. If you’re told you need to get blood drawn, ask why. Sometimes, that’s enough to stop the “cookbook” from taking over. Every test should be done for a specific reason, not just because it’s what’s done in this protocol, but because it helps focus the diagnosis. Also ask about what to do if the tests are negative. Just because they’re negative doesn't mean there isn’t anything wrong, so what should be next steps?

#4. Inquire about treatment options. In very few situations is there only one test that could work or one protocol that must be followed. If your doctor says you need to do this one set of tests, ask what your other options are. Often, watchful waiting is a perfectly acceptable alternative. Discussing options helps to remind your doctor to tailor the treatment to you.

#5. Let your doctor know that you want to be a partner in your decision-making. If you still think that your doctor is following a recipe rather than individualizing care, ask her to explain her thought process to you. Say that you respect her expertise, and you want to learn what it is that she is thinking. Your doctor may be so busy or so used to checklists that your request can help her to refocus on you and your individual needs.

This article was previously published in Women's Health Magazine (posted here with their permission).

My "Coming Out" Story at TEDxFoggyBottom

Have you ever had a shameful secret, something you hid from the world, something you wished more than anything that you could get rid of?

I did. Growing up, I had a severe stutter that was often so bad I couldn’t get out any words at all. One of my earliest memories is hiding in the janitor’s closet during recess so I didn’t have to talk to anyone. In second grade, I stabbed myself with a pencil so I could get out of answering in class. That piece of pencil lead is still in my leg as testament to my shame.

If only I could get over my deepest shame, my terrible fear! Surely fear is something bad, something that prevents us from reaching our goals. Yet, books and movies are filled with stories of success that only come after overcoming fear and facing adversity. So how do you select for the good parts of fear that build character rather than destroy confidence?

In February, after more than 30 years of hiding, I finally “came out” and talked about my stuttering in this TED talk. Becoming open about your deepest, darkest secret—it’s not easy. Actually, it’s downright scary to open that closet door when you spent your whole life keeping it shut. A part of me still cringes when I think of the little girl hiding in the closet with the pencil lead in her thigh. A part of me wishes I were never that little girl. Yet, I also recognize that being a person who stutters is part of my identity, like being a woman, a sister, a wife, a doctor, an Asian-American.

 

In the talk, I discuss three lessons that have helped me the most:

#1. Separate fear from shame, and take shame head on. It took me many years to learn that fear different from fear. Fear is when you are afraid of something, afraid of doing or trying something. Shame is when what you are afraid of is yourself. Hiding feeds shame, and openness is its antidote. To overcome fear, we have to first overcome shame.

#2. Tackle your “what if?” with “so what”. There are four words that plague us and feed shame and fear: what if I fail? Instead of avoid them, answer with two more: “so what?”. If there’s something you want to do, what’s the worst that will happen if you go for it? We know the answer, right? We’ve all been there. Nobody will laugh. You won’t die. As Tina Fey says, you can't be that kid standing at the top of the waterslide, overthinking it. You have to go down the chute.

#3. Ask yourself, what’s the worst that could happen if I DON’T do it? Who will it hurt? If you want to be a doctor and don’t become one because you’re too afraid, who will serve your community? If you’re afraid of speaking up to help someone in need because you’re afraid of stuttering, who will do it instead? All of us are here today because other people made sacrifices, because they faced fear head on for us. Now it’s our turn, for those who follow.

Please share  your stories: have you brought something you're ashamed about into the open? How have you turned your fear inside out?