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It was a dark day in 2011 when Karen Concannon found out she was multiple myeloma, a deadly blood cancer. Only about half of people diagnosed are alive 5 years later. And treatments can be strenuous and often leave permanent side effects.
The main priority for Concannon was to ask her oncologist detailed questions about her illness and what to expect. Fortunately, Concannon’s doctor proved to be a top communicator.
“I never left his office questioning anything or feeling like I didn’t understand the whole story,” she says.
Whether you have been diagnosed heart disease, injured your knee or need guidance on managing your diabetes, it is important that you and your doctor understand each other clearly. This allows you to weigh the pros and cons of different therapies, know what you need to do to be better, and gain a realistic sense of your long-term prognosis.
But all too often, complications obscure that conversation. You may be worried about your illness or you are aware of the risks of treatment. Your doctor may rush with time or will throw out unfamiliar anatomical concepts or complicated statistics.
The stakes are high. Only 1 in 10 Americans, according to the U.S. Health Care Research and Quality Agency, are health literate. Translation: 90% of us do not know how to obtain, process and understand basic health information.
“Lack of health literacy can affect anyone, in any patient population,” says Patricia McGaffigan, RN, vice president of security programs at the Institute for Health Improvement. This, in turn, can lead to misunderstandings, treatment errors, and lost opportunities to shape 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 need to visit an expert you may not be familiar with, such as e.g. neurologist or a rheumatologist. But it is worth looking for a compatible doctor, even if they are distant or waiting longer for appointments.
A few years after Concannon was diagnosed with multiple myeloma at age 44, she received another devastating diagnosis: fast-growing breast cancer.
Concannon struggled with the side effects of treating her two cancers. All the while, she struggled to educate herself and to be an advocate for herself.
“It’s important to have a really good, caring and compassionate doctor on your side, as I had,” Concannon says.
Still, some of Concannon’s interactions with doctors have failed. She wants another oncologist, the one who informed her before the most difficult phase of multiple myeloma treatment – transplantation Stem cells from the bone marrow – he warned her of the severe sore throat and gastrointestinal disturbances she had suffered.
“I wish he had told me more about the possible side effects,” she says. “He may have thought ignorance was bliss, but I would like to be more prepared.”
Rose Gerber, director of patient advocacy and education at the Community Oncology Alliance, says perseverance is key to getting all your questions answered. Even if you are overwhelmed after the first diagnosis, Gerber says you will get more out of your visit to your doctor if you arrive ready 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, a professor at the University of Maryland School of Medicine and head of epidemiology at the Maryland VA Health 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 versus statistics
Your preferences and ways of learning should shape conversations with your doctor.
“One patient wants to know research statistics, others want to know the experiences doctors have had with other patients,” says Teresa Schraeder, MD, a clinical associate professor at Warren Alpert School of Medicine at Brown University in Rhode Island. “Doctors don’t want to overload the patient with information they don’t need and don’t ask for.”
You may be curious to hear how other people with your condition have gone through a particular therapy. However, their experiences may not apply to you.
“The anecdote is extremely compelling and greatly influences patients’ decisions, ”Morgan says. But one person’s story is simply not enough proof to predict the same results for you.
Concannon agrees. While she was on breast cancer treatment and multiple myeloma, she wasn’t too interested to hear about others in her situation.
“Every story is different,” she says. “I didn’t want to get false hopes or be discouraged.”
Still, experts say storytelling has its place. First, the stories humanize clinical interactions and offer a context that can help make treatment decisions.
“When cancer patients have their first conversation with an oncologist, they want facts, and they want compassion,” Gerber says.
Some doctors and patients are more comfortable with solid data. Statistics can tell you what the chances are of successful treatment or the likelihood of side effects. But numbers can be misinterpreted or not applied to a person with your age, health and family history.
The way you formulate your questions is important. “You can say,‘ I’d love 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 could describe the event as extremely rare, rare, common, and so on.
A family member or friend can be a valuable companion during medical visits.
Gerber, who suffered from breast cancer, was offered the opportunity to join Clinical trial for experimental treatment.
“It was hard to understand all the details or know what questions to ask,” she says. “My husband came to many meetings, and his calm demeanor helped me understand.”
Research hazards
These days, even the most complex medical information is just a few presses away. But Schraeder says it can be turned on its head.
“Dr. “Google can deceive and alarm as much as it can inform and educate patients,” she said. “Patients and doctors can be found in rabbit holes with information whose source they are not sure about.”
A better approach is to learn as much as you can about your condition and come to your meetings with basic questions, such as what you need to do and why it is important. It is also a good idea to bring a family member or friend with you who can digest the information and help you remember the details.
For his part, Concannon believes that education and perseverance were key to navigating through two torturous illnesses.
“No question is stupid or irrelevant or should be asked,” she says. “Expect to get an answer to every question you ask.”
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