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Your Life, Your Choice

Working as an active partner with your doctor will help you live the way you want.

Michele Cohen Marill

For years, Kim O’Neill felt ignored when she tried to talk to her doctors about her pain. One doctor told her she had a “mild” case of rheumatoid arthritis (RA) because she didn’t have the classic symptoms of redness and swelling – even though O’Neill could barely hold a pen to write.

“I used to be a real marshmallow when I would see a doctor,” says O’Neill, 67, whose symptoms began in her 30s. “They would say, ‘Do this,’ and I would say ‘OK.’”

O’Neill, an accountant, decided the conversations might improve if she had some medical knowledge, so she took extraordinary measures: She took classes in anatomy, physiology, chemistry, biology and even occupational therapy – and then told the doctor what she needed. It was a long journey, but O’Neill eventually found a rheumatologist who listened and was willing to partner with her. She had surgeries on her wrist and switched medications, and today she feels stronger than ever.

“To be able to feel empowered enough to take an active role in the way you’re treated is just amazing,” says O’Neill, a member of the patient advisory board for the University of North Carolina at Chapel Hill’s Thurston Arthritis Research Center.

But most people can’t go back to school just to learn how to talk to their doctor – and they shouldn’t have to. “Shared decision-making,” a concept that’s gaining traction among patients and health care providers, is making it easier to have these conversations and to find doctors who are more willing than in the past to ask and listen.

Doctor-Patient Partnership

Shared decision-making involves a patient fully in decisions about his or her care and gives his priorities and values weight in those decisions. A growing body of research shows that this approach to care results in better health outcomes, and it is reshaping health care.

“Every other industry, no matter what it is, starts with the end user in mind. We just haven’t done that in health care,” says Suz Schrandt, director of patient engagement at the Arthritis Foundation, which is committed to putting the patient’s needs first. It has launched an initiative, called the Live Yes! Arthritis Network, to help people with arthritis take a more active role in their care and treatment decisions.

In shared decision-making, you, the patient, tell the doctor about symptoms that bother you and the relief you hope to get. The doctor shares information about treatments, including the benefits and risks of different options. But since you are the expert in how arthritis affects your life, you have important information to share, which makes it easier to have that kind of balanced conversation with your doctor. Together, you can tailor the approach most likely to meet your goals.

No Silver Bullet

Shared decision-making is especially important in arthritis care because there are many choices: There is rarely one single treatment that is clearly most effective, and the various medications and modalities all have different side effects and rates of success. For example, people with osteoarthritis (OA) can choose among options including nonsteroidal anti-inflammatory drugs, corticosteroid injections, surgery or alternative and complementary treatments.

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March/April 2019

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