It was a dark day in 2011 when Karen Concannon learned that she had multiple myeloma, a deadly blood cancer. Only about half of the people diagnosed with it are alive 5 years later. And the treatments can be grueling and often leave lasting side effects.
A top priority for Concannon was to ask her oncologist detailed questions about her disease and what to expect. Luckily, Concannon’s doctor turned out to be a master communicator.
“I never left his office questioning anything or feeling like I didn’t get the whole story,” she says.
Whether you’ve been diagnosed with heart disease, injured your knee, or need guidance on managing your diabetes, it’s important that you and your doctor understand each other clearly. That lets you weigh the pros and cons of different therapies, know what you must do to get better, and get a realistic sense of your long-term prognosis.
But, too often, complications cloud that conversation. You may be anxious about your illness or leery of risks of a treatment. Your doctor may be rushed for time, or toss out unfamiliar anatomical terms or complicated statistics.
The stakes are high. Only 1 in 10 Americans, according to the U.S. Agency for Healthcare Research and Quality, are health literate. Translation: 90% of us don’t know how to get, process, and understand basic health information.
“Lack of health literacy can affect anyone, in any patient population,” says Patricia McGaffigan, RN, vice president of safety programs at the Institute for Healthcare Improvement. That, in turn, can lead to misunderstandings, medication errors, and lost opportunities to shape the best care.
How to Talk to Your Doctor
Clear conversations are easier if you have the right doctor. You might not always have a choice, especially if you need to see a specialist you might not be familiar with, such as a neurologist or a rheumatologist. But it’s worth searching for a compatible doctor, even if they’re farther away or have longer waits for appointments.
A few years after Concannon was diagnosed with multiple myeloma at age 44, she got hit with a second devastating diagnosis: fast-growing breast cancer.
Concannon battled side effects from treating her two cancers. All the while, she worked hard to educate herself and to be her own advocate.
“It’s important to have a really good, caring, and sympathetic doctor on your side, as I did,” Concannon says.
Still, some of Concannon’s interactions with her doctors fell short. She wishes that another oncologist, the one who briefed her before the most difficult phase of her treatment for multiple myeloma -- a transplant of stem cells from bone marrow -- had warned her about the severe sore throat and gastrointestinal distress she endured.
“I wish he’d told me more about possible side effects,” she says. “Maybe he thought ignorance is bliss, but I would’ve liked to be more prepared.”
Rose Gerber, director of patient advocacy and education at the Community Oncology Alliance, says persistence is key to getting answers to all your questions. Even if you’re overwhelmed after a first diagnosis, Gerber says you’ll get more out of your visit with your doctor if you arrive prepared with questions and basic information about your health.
“Patients have an obligation not to be passive,” Gerber says. “You have to be actively engaged.”
Daniel Morgan, MD, professor at the University of Maryland School of Medicine and chief of epidemiology at the VA Maryland Healthcare System, advises people to connect with their doctor on a deeper level.
“Let your doctors know what kind of person you are,” he says. For example, “let them know whether you want aggressive treatment even for a small health benefit.”
Storytelling vs. Statistics
Your preferences and ways of learning should shape the conversations with your doctor.
“One patient wants to know research statistics, others want to know experiences the doctors have had with other patients,” says Teresa Schraeder, MD, clinical associate professor at the Warren Alpert Medical School of Brown University in Rhode Island. “Doctors don’t want to overload the patient with info they don’t need and aren’t asking for.”
You might be curious to hear how other people with your condition fared with a particular therapy. Yet their experiences might not apply to you.
“Anecdote is hugely convincing and greatly influences patients’ decisions,” Morgan says. But one individual’s story simply isn’t enough evidence to predict the same results for you.
Concannon agrees. When she was undergoing treatments for her breast cancer and multiple myeloma, she wasn’t much interested in hearing about others in her situation.
“Everybody’s story is different,” she says. “I didn’t want to get false hopes or be discouraged.”
Still, experts say storytelling has its place. For one thing, stories humanize clinical interactions and offer context that may help guide treatment decisions.
“When cancer patients have that first conversation with an oncologist, they want facts, and they want compassion, too,” Gerber says.
Some doctors and patients are more comfortable with hard data. Statistics may be able to tell you the chances of success with a treatment or the likelihood of side effects. But numbers can be misinterpreted or not applicable to a person with your age, health, and family history.
How you phrase your questions matters. “You can say, ‘I’d like to see information about patients like me,’” Morgan says. “Out of 100 people like me, how many will benefit, how many will have side effects?”
Or you can ask your doctor to translate the numbers into words. So instead of percentages, they might describe an event as extremely rare, rare, common, and so on.
A family member or friend can be valuable companions during medical visits.
Gerber, who has had breast cancer, was offered a chance to join a clinical trial for an experimental treatment.
“It was hard to comprehend all the details or know what questions to ask,” she says. “My husband came to many appointments, and his calm demeanor helped me understand.”
Perils of Research
These days, even the most complex medical information is just a few keystrokes away. But Schraeder says that can backfire.
“‘Dr. Google’ can mislead and alarm as much as it can inform and educate patients,” she says. “Patients and physicians can find themselves down rabbit holes with information whose source they aren’t sure about.”
A better approach is to learn as much about your condition as you can, and to arrive at your appointments with basic questions, such as what you need to do and why it’s important. It’s also a good idea to bring along a family member or a friend who can digest information and help you remember details.
For her part, Concannon believes that education and persistence were key to navigating through two harrowing illnesses.
“No question is dumb or irrelevant or doesn’t need to be asked,” she says. “Expect to get an answer for every question you ask.”