There's a wonderful Seinfeld episode where Elaine grapples with being labeled a "difficult" patient. She's on the examining table, waiting for her doctor, when she sneaks a peek at her medical chart. She discovers that she is described as "difficult" in her record. Elaine reacts to this harsh reality in later scenes: her difficult label is passed from one physician' to the next via her patient history. Her reputation precedes her, and she gets crummy care as a result.
Turns out we're a nation of doctor pleasers when it comes to health care. A recent study conducted by the Palo Alto Medical Foundation Research Institute and the Dartmouth Center for Health Care Delivery Science found that patients avoid challenging their physicians because they're afraid of getting the "difficult patient" label.
Researchers conducted six focus groups, with mostly Caucasian, well educated and above average income patients. All characteristics that might make you assume they would be comfortable and self-confident dealing with physicians. The researchers were surprised to discover that participants reported that they frequently hold back from sharing their preferred care choices with their physicians and from asking questions out of fear that it might damage their relationship with their doctor.
Have you ever felt this way?
Here's an example of a common health care experience and some suggested replies:
You want to hear more about the pros and cons of a recommended diagnostic treatment, procedure or surgery. You're interested in getting more information or maybe even a second opinion. But you're concerned that pushing back a bit to get more information' might hurt your relationship with your doctor.
Say something like this: "I need more time and information to help me understand and make my best choice. How can you help me learn more about my options?
Or 'This is a big decision for me. I want to get more information and talk to my family and other experts before I decide what to do next. How quickly do you think I need to make a choice?
The answers you get will provide you with some insights about how likely it is that this clinician will be comfortable with helping you make choices about your care that are best for you.
If your physician steps back, grumbles, resists, or worse, scribbles "difficult patient" in your chart, you might consider finding another physician.
There's an effort underway, supported by organizations like the Informed Medical Decisions Foundation, to increase comfort with and skills in what's called Shared Medical Decision-Making. The Foundation (and others) is advising physicians that patients often find it difficult to express their preferences to their doctors. They suggest doctors need to explicitly tell patients that their opinion matters and that it's "OK to disagree." In addition, the Foundation is creating patient-physician decision support tools that help both walk through the pros and cons of many common medical procedures.
Changing patterns of patient-physician behavior is going to take time. In the meantime, try to see your physician as your consultant. Develop your questions in advance when possible and do ask them. Listen. Interact. And then, ultimately, decide.
Try not to worry about being called "difficult." Your questions can help you make the best choices for you and your family. That's worth it.