This post is different from what I usually blog about as I have many friends with loved ones who are experiencing serious medical issues. In these situations, besides being present, it’s hard to know how to be helpful, especially when sitting in on conversations with doctors. My brother, who has been a practicing physician for twelve years, recommended a book that I found incredibly useful for facilitating conversations between doctors and patients. So whether you’re a patient or the loved one of a patient, here are my takeaways on how to communicate with your doctor from Jerome Groopman’s How Doctors Think:
1) The doctor wants to help: People tend to have a polarized view of doctors. On one hand, I’ve noticed people who have a deep mistrust of health care providers. They’ve had a past negative experience that casts a long shadow. They believe doctors are lazy, dismissive, condescending, and withhold crucial information. However, one study suggests up to 83% of diagnoses came from the patient’s history. This means your ability to communicate the past is tremendously important in helping a doctor figure out what’s wrong with you. In order to talk with doctors effectively, you need to trust them. If you don’t see your cooperation with your doctors as paramount to successful care, you’re severely handicapping your chances. Help them help you.
2) The doctor is human: There are also people who worship medical professionals and see them as salvation. Patients are often intimidated by doctors because they’re highly educated, intelligent, and are held in high social esteem. But a doctor is human. This means he or she is limited and suffers from bias just like anyone else. One of Groopman’s key themes is the fact most clinical misjudgment is rooted in cognitive error. His book discusses heuristic errors of anchoring, attribution, and availability. One aspect of this is how doctors stereotype people and are sometimes wrong. Stereotypes are valuable because the ability to instantly recognize patterns saves time and money. But sometimes a disease or condition doesn’t fit a presumed pattern. For instance, a doctor may jump to alcoholic cirrhosis as a diagnosis because he stereotypes the patient as a drunkard but in the case of Charles Carver, his enlarged, hardened liver was caused by Wilson’s disease, an inherited disorder. Patients with substance abuse issues can trigger a doctor’s disgust reflex. In this case, the intern assumed the patient’s stated “one drink a day” was an intentional deception.
3) Acknowledge your fears: People love to do research on the internet. I know I do. I remember getting a poison oak reaction in high school and insisting the doctor prescribe me a corticosteroid. I wanted to prove to him that I was capable of diagnosing myself. I’m sure he bit his tongue as he worked around my arrogance. Research often masks fear (and in my case, pride). It’s vital to be honest and vulnerable about the fear rather than assuming you know better than your physician. Groopman suggests the following sample phrasing:
“I’m most worried that what seemed like acid reflux could be the first sign of cancer.”
That’s a candid, vulnerable, and courageous statement. That’s not an easy thing to say but it’s so important to put out there so the physician can reassure you.
4) Work to answer the doctor’s questions with precision: Every doctor is trained in a system. They eliminate different possibilities by asking questions in order to arrive at the most likely diagnosis. About a year ago, my mom went to the hospital due to symptoms of severe dizziness when she tried to stand up. At the urgent care clinic, I remember the physician asking “Does the room spin when you stand up?”, “Do you feel nauseous?”, “What happens when you turn your head to the side?" and “Is the feeling in your head or stomach?”
In retrospect, it was clear the doctor suspected vertigo but was trying to eliminate more serious possibilities. In response to every question, my mom replied,
“I feel dizzy”
I could tell the doctor was getting frustrated because my mom’s responses were not helpful. I also know my mom was extremely flustered. But I just sat there watching because I didn’t know how to interject in a calm and respectful way. The doctor doesn’t need every possible detail when you answer the question but you can always ask,
“Can you help me understand what you’re looking for?”
5) Help your doctor slow down by asking questions: Doctors are extremely busy and under considerable stress. It’s easy for them to rush through a visit or consultation. You can help the doctor slow down by asking questions. The number of questions should correlate with the severity of the symptoms. If you’re having minor cold symptoms, it’s probably not helpful to pepper him with interrogatives. Here are some questions to help a doctor think about your condition from a different perspective:
“Could two things be going on to explain my problem?”
“Is there anything that doesn’t fit?”
In instances like this, it might be helpful to voice some of the distracting realities and stereotypes. Take the case of Maxine Carlson, a young woman with irritable bowel syndrome (IBS) who made repeated visits to the emergency room (ER) and was labeled “functional” because doctors couldn’t find anything wrong related to the IBS. After the third visit, she collapsed on the way home and was rushed by ambulance to the ER. She suffered from internal bleeding due to a ruptured ectopic pregnancy. It was missed after three tries. In retrospect, Groopman imagines Carlson might have said something like:
“Yes, I know that I have irritable bowel syndrome and that I’ve been here many times and been told it’s my chronic condition. But if the pain is something new, on top of that long-standing problem, what body part might be causing the symptom?”
Or simply “What else could it be?”
6) Learn the values informing a medical decision: Everyone, especially in times of stress and uncertainty, wants to be told what to do. However, doctors, like pastors, often refrain from giving advice on medical decisions because they recognize the limitations of medicine but more importantly, they often don’t share the same values as their patients. A doctor may value quality of life over pure longevity. Another physician may be risk-averse to new treatments. A doctor's value system will inform how she makes decisions on care. The patient and his family need to have tough conversations to think through these values. Here are some ways to get guidance on making difficult medical decisions:
"If you were in my position, how would you think about this?”
“What criteria would you use to make this decision?”
“I know we probably have different values but if you were me, what would you do and why?”
This last question is less dangerous than simply asking for a list of instructions because you’re acknowledging the potential value conflict. You're likely in an unprecedented and scary situation, which naturally leads to a certain thought process. But think about the doctor who confronts life and death on a daily basis--it might be helpful to hear what she thinks and values
7) Write down what the doctor says and when necessary, ask for definition or repetition: "What’s multiple myeloma? How do you spell that?” People are afraid to look stupid in front of doctors. Let go of that shame because it’s your or loved one’s life at stake. Get the doctor’s name, ask how to contact him/her, get the doctor to spell the name of the condition, and write it down. It’s hard to do this in the emotion of the moment but try to prepare yourself and bring a friend or family who will go with you and help you ask questions. Pick someone who is calm, gentle, and wise. That’s what I aspire to be. The next time my mom goes to the hospital and she’s flustered from dizziness, I might put my hand on her shoulder and say something like:
“Mom, I’m here and Dr. Gupta is here to help you. She’s asking you these questions so she can better understand what’s going on. I know you’re feeling dizzy. What she’s looking for is other words to describe how you’re feeling. I know it’s hard to talk when you feel like this but you can do it."