Patients urged to 'partner' with caregivers & doctor

Patients urged to 'partner' with caregivers & doctor

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When Sarah Head first came to Emory University Midtown Hospital in 2010, she felt like her health was falling apart.

She says, "I went from stumbling, to walking with a cane, to not walking at all."

The Atlanta native, who’d moved to rural Tuskegee, Alabama, with her husband Otis in 2006, found herself in and out of the hospital, falling down, getting hurt. It took about year to get a diagnosis. A doctor told her it was Polymyositis, inflammatory disorder that causes muscle weakness on both sides of the body. But, Head was also developing kidney and heart issues, and her situation seemed to be growing more and more complicated.

Head says, “When I went to Emory, I had 21 medications."

At Emory, Head was assigned a team of doctors, who took another look at the drugs she’d been prescribed and offered different treatment options. She peppered them with questions, asking, “What was the risk? What would be the benefits? Would it make me walk? You know, all of the above."

Head’s husband Otis says, finally, they had some answers. He says, “It was refreshing to hear it wasn't doom. 'Oh, we don't know what to do, we don't know what's happening.’ They gave us hope again."

This give-and-take between patients and health care providers is something Dr. Wylin Wilson, Ph.D., studies closely, as Associate Director of Education for the National Center for Bioethics in Research and Healthcare at Tuskegee University.

Dr. Wilson really encourage patients to take an active part in their care. She says, “One of the things that we suggest that people do is that they have a healthcare advocate. And it can be as simple as a family friend. It can be a family member. But someone who is there with you, who, they can also ask questions."

Wilson suggests making a list of the questions you want to ask your doctor before your appointment. When you’re meeting with the doctor, take notes. She says the best choice is a physician who will listen to you and take the time to make sure you’re understanding your diagnosis and care options. Wilson says, “If you are not clear on any of those things: why it's being done, what is being suggested to be done, what the alternatives are, then that is a red flag. And it should not be language that's over your head."

She says patients need to think about how they can partner with their provider, “Because I know sometimes it's hard. But looking at our healthcare as a partnership with the physician is important. And, therefore, as a partner in this relationship, I can ask you questions. I can demand clarity."

Sarah Head finally has some answers. And she feels like - at long last - she's getting better. She says, :Once I had doctors I could trust what they were saying, and they could communicate with me, then it was left up to me to do the rest of the work."

The “rest of the work” means taking care of herself, and sticking with her care plan.

If you’re facing a diagnosis that is serious, or being told you will need surgery, Wilson suggests getting a second opinion. This will help you get a more clear understanding of your options. Check with your insurance provider to make sure a second opinion is covered. Before you go, have your doctor’s office send a copy of your records to your consulting physician. Then, make a call to make sure the records are there before your appointment day.

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