Managing your health care in the face of a serious illness

July 10th, 2019

Shannon Brownlee

When you’re facing a serious illness, navigating the health care system can be just as difficult as managing your physical health. As stories from frustrated health care experts have shown, even those with plenty of knowledge about health care can struggle to work within our fragmented and confusing system.

But don’t despair–in the latest edition of NPR‘s Life Kit series, Lown Institute Senior Vice President Shannon Brownlee, patient advocate Liz Salmi, and Johns Hopkins surgeon Marty Makary offer some tips on how patients can maintain control over their health care in stressful situations. The segment was hosted by Georgetown University family medicine physician Mara Gordon and general internist and President of the University of Oklahoma John Schumann.

Listen to the radio piece on NPR here!

Salmi used her story of receiving a diagnosis of brain cancer to illustrate some of the challenges in dealing with the health care system. “The words of what you have are delivered in really technical speak. They don’t say, you have brain cancer. They say… you have a grade two astrocytoma,” said Salmi. Other challenges include not knowing which doctor to contact about which issue, getting access to doctors’ notes, and learning all of her options before making treatment decisions.

“Any doctor who doesn’t want you to get a second opinion is a doctor you shouldn’t be seeing” — Shannon Brownlee

The panelists emphasized the importance of having a primary care doctor be the center of your care team. “We have primary care doctors who want to be in the loop of everything that happens with that patient. You want someone who’s fighting for you like that,” said Makary.

However, when making a major treatment decision, getting another doctor’s opinion is key. “Any time you are told, you need a seriously invasive procedure, you need a second opinion,” said Brownlee. “Any doctor who doesn’t want you to get a second opinion is a doctor you shouldn’t be seeing.”

Taking your time to weigh these options once you know them is extremely important; you should not feel rushed into surgery if it’s not an emergency. Brownlee suggests questions to ask your doctor before embarking on a major procedure: What happens if I don’t get treated? What are the chances this treatment will work for me? How will this affect my quality of life? And in general, a doctor’s outright dismissal of your concerns without an explanation should be a red flag. 

For more tips, listen to the full piece on NPR.

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