There’s a scene in the movie “50/50” in which Adam, played by Joseph Gordon-Levitt, is about to be told he has a cancerous tumour on his spine. His hopelessly insensitive doctor begins by droning on about the tumour, and it’s clear Adam doesn’t have a clue what’s being said. Then the doctor says the word “cancer.”

Suddenly, the camera pans in on Adam and he zones out in shock as the rest of his doctor’s words are lost in a muffle. He doesn’t hear a word of what’s said next.

Adam’s experience is not that unusual. Many patients have trouble understanding their doctors, especially in times of crisis. And it doesn’t help when the medical professionals use language patients can barely understand.

In the medical world, a patient’s ability to understand medical language is called “health literacy” and most of us are pretty low in it. In fact, the U.S. Centers for Disease Control and Prevention estimates that nearly nine out of 10 adults have difficulty handling medical information, advice and health product labels.

It isn’t just a problem for the uneducated either. Even people with advanced educations can be stumped when confronting illnesses they know nothing about.

“Just because someone’s a lawyer doesn’t mean they understand the language of a doctor,” says Colleen Young, a health communications expert who helps patients understand medicine’s often complex language.

Young says the anxiety that comes with a trip to the doctor can make it hard for even the most intelligent person to grasp everything they’re told. And since most doctor’s appointments are short, the rushing can make it worse.

“It’s not intelligence that governs whether people understand their doctor; it’s often stress,” she says.

For many years, Young helped write the pamphlets the Canadian Cancer Society routinely offers to newly-diagnosed cancer patients. She says while most patients think they want their condition explained to them in the simplest of terms, it’s also important for them to learn the “jargon” of their illness. Do your own reading after visiting the doctor, she advises, and arm yourself with an understanding of the terminology of your condition.

Young also suggests that patients should let doctors know when they’re lost, no matter how difficult admitting it might be.

“I’d have a hard time doing that myself,” Young says, explaining her go-to talk-back method. “So that would mean saying, ‘Let me see if I understand what you’re saying it…’ and then use your own words to see if you have things right.”

Sholom Glouberman, of the Patients’ Association of Canada, thinks the problem of “doctor jargon” is actually beginning to improve. Part of the change comes from younger doctors’ “bedside manner” training. But Glouberman says patients are playing a part, too.

At one time, people only went to the doctor for emergencies. Now, we live with treatable, chronic diseases that require regular appointments and more face-to-face time with our physicians.

“The culture has changed. It used to be that doctors intoned; they didn’t speak. But now, people are starting to form relationships with their doctors. That’s very different from the way it used to be,” he says.

“Certainly, younger doctors aren’t taking up the old paternalistic model. “

Glouberman also has some tips for those who can’t cut through the medical jargon.

“If you’re having trouble understanding what the doctor says, the first rule is to not go to appointments alone. And the second rule is to write down your questions before you go, of what you want to talk about and understand,” he advises.

“And if you don’t get a good answer, then go to the Internet to see if you can get your answers.”

Both Glouberman and Young say the Web has changed everything for patients. And, it’s giving them access to a key resource that was previously hard to tap into: each other.

Peer-to-peer sharing on patient discussion websites is changing everything, says Young. Certain sites -- such as CancerConnection.ca or the discussion forum she manages at VirtualHospice.ca -- allow patients to get the answers to the questions that are most important to them.

She says doctors might be good at explaining what’s going to happen during treatment, but they can’t tell you what it might feel like. It’s patients who can explain to other patients how to prepare for hair loss during chemotherapy, for example, what questions to ask of their care team, and how to talk to children about illness and fears.

What’s more, both Young and Glouberman say the information is often quite accurate, especially on the larger, well-known patient forums.

“It’s quite self-regulating, in a way,” says Young, noting patients tend to correct bad or misleading information on the forum, much in the same way readers tweak Wikipedia.

“And studies show that peer-to-peer networking is quite good for getting information on the actual experience of living with an illness or a new diagnosis.”

Finally, “patient navigators” and mentors are proving invaluable in helping guide patients throughout an illness. This is particularly true in cancer, in which the average patient might meet with an oncologist, a surgeon, a radiologist and their own family doctor. The navigator remains the constant contact, offering guidance and support and helping to make sense of the whole experience.

 

Tips for better understanding your doctor:

  1. Prepare a list of questions. Write down your questions and concerns about your condition and treatment before your next medical appointment.
  2. Write down your doctor’s answers. Taking notes will help you remember your doctor’s responses and instructions. This is vitally important in the case of new medications.
  3. Bring someone with you to your appointments. Bring someone along who can serve as a second set of ears and can offer moral support. Glouberman says in the case of seniors or those with language barriers, an adult child can be an invaluable resource.
  4. Keep a "health history" journal. This is important if you’re concerned about how your condition changes from day to day, or to record what effect any medications or treatments are having. It’s often hard to recall these changes when we’re under stress so keep the list current.
  5. Make sure you’re clear on what will happen next in your treatment. Should you call back for test results or will they call you? Are they arranging the appointment with a specialist or are you? Make sure you’re clear on your role.
  6. Seek out the advice of other patients. Many health chartites offer forums and mentorship programs to allow patients to help patients. It’s even a concept that Glouberman says it being put to use at the long-term care facilities at Baycrest, where families of long-term residents help to welcome and answer the questions of new residents.
  7. Find out who else to go for help. “An essential answer that all patients should have before they leave an appointment is: What is my next step? And if I have questions afterward, who can I call?” says Young. Often, the doctor will offer a nurse who might have more time to answer your questions fully. And asking to speak to someone else is a great way to work around a doctor who’s making no sense to you, without risking insult them.