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How to get your doctor to speak your language

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 live 5 years later. And the treatments can be debilitating and often leave lasting side effects.

A top priority for Concannon was to ask her oncologist detailed questions about her illness and what to expect. Fortunately, Concannon’s Doctor became a master communicator.

“I never left his office and questioned anything or felt that I did not understand the whole story,” she says.

Whether you have been diagnosed with heart disease, has injured your knee, or needs guidance on managing your diabetes, it is important that you and your doctor clearly understand each other. It lets you weigh the pros and cons of different therapies, know what you need to 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 be afraid of the risks of a treatment. Your doctor may be in a hurry, or throw away unknown anatomical terms or complicated statistics.

The input is high. Only 1 in 10 Americans, according to the U.S. Agency for Healthcare Research and Quality, is health literate. Translation: 90% of us do not know how to get, process and understand basic health information.

“Lack of health literacy can affect anyone, in any patient population,” said Patricia McGaffigan, RN, vice president of safety programs at the Institute for Health Care Improvement. This in turn can lead to misunderstandings, medication errors and lost opportunities to form the best care.

How to talk to your doctor

Clear conversations are easier if you have the right doctor. You may not always have a choice, especially if you have to see a specialist you may not be familiar with, such as a neurologist of a rheumatologist. But it’s worth it to look for a compatible doctor, even if they are further away or waiting longer for appointments.

A few years after being diagnosed with multiple myeloma at age 44, Concannon received a second devastating diagnosis: fast-growing breast cancer.

Concannon struggled with side effects from chemotherapy and a bone marrow transplant. All the while, she worked hard to educate herself and be her own advocate.

“It’s important to have a very good, caring and sympathetic doctor on your side, as I did,” Concannon says.

Yet some of Concannon’s interactions with her doctors fell short. She wishes that another oncologist, the one who informed her before the most difficult phase of her treatment for multiple myeloma – a transplant of stem selle of bone marrow – warned her about the severe sore throat and gastrointestinal distress she was enduring.

“I wish he had told me more about possible side effects,” she says. “Maybe he thought ignorance was luck, but I would like to be more prepared.”

Rose Gerber, director of patient advocacy and education at the Community Oncology Alliance, says perseverance is the key to getting answers to all your questions. Even if you are overwhelmed after an initial diagnosis, Gerber says you will get more out of your visit to your doctor if you show up prepared with questions and basic information about your health.

“Patients have an obligation not to be passive,” Gerber says. “You have to be actively involved.”

Daniel Morgan, MD, professor at the University of Maryland School of Medicine and head 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 if 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, another wants to know experiences the doctors have had with other patients,” said Teresa Schraeder, MD, clinical associate professor at Brown Alpert Medical School at Brown University in Rhode Island. “Doctors do not want to overload the patient with information that they do not need and that they do not ask for.”

You may be curious to hear how other people with your condition have fared with a particular therapy. Yet their experiences may not apply to you.

“Anecdotes are extremely compelling and greatly influence patients’ decisions,” says Morgan. But one individual’s story is simply not enough evidence to predict the same results for you.

Concannon agrees. When she underwent treatments for her breast cancer and multiple myeloma, she was not much interested in hearing from others in her situation.

“Everyone’s story is different,” she says. “I did not want to have false hopes or become discouraged.”

Yet experts say storytelling has its place. For one thing, stories humanize clinical interactions and provide context that can 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 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 formulate your questions matters. “You could say, ‘I would 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 can 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 had breast cancer, was offered a chance at a clinical trial for an experimental treatment.

“It was hard to understand all the details or know what questions to ask,” she says. “My husband came to many appointments, and his calm demeanor helped me to understand.”

Dangers of research

These days, even the most complex medical information is just a few keystrokes away. But Schraeder says it could backfire.

“‘Google can deceive and alert as much as it can inform and educate patients,” she says. “Patients and doctors can find themselves in rabbit holes with information they are not sure about.”

A better approach is to learn as much as possible about your condition and to arrive at your appointments with basic questions, such as what you should do and why it is important. It is also a good idea to bring a family member or friend with you who can digest information and help you remember details.

In turn, Concannon believes that education and perseverance were the key to navigating through two troubling diseases.

“No question is stupid or irrelevant or does not need to be asked,” she says. “Expect to get an answer for every question you ask.”

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