Patient Advocate Urges Providers to Teach Patients how to be ‘Effective Rather than Offensive Advocates’ for their Care

Institute for Healthcare Improvement faculty member, Duke University Medical Center patient advocate and life-long patient Tiffany Christensen offered what she called a “bed’s eye view” to the Oregon Patient Safety Forum on how to create an “authentic partnership” between patients and providers.

Tiffany Christensen describes herself as “born with the gift of cystic fibrosis,” learning and growing from her disease. But by age 21, she was sick all the time; she was on oxygen, weighed 95 pounds and had 25 percent lung capacity when she got the call for a lung transplant.

Only after her operation had begun did her surgeon realize the tubing was cut too short on the donor lungs. He couldn’t proceed with the surgery. Instead, he closed her back up and hoped for the best.

“I got an apology from the surgeon,” Christensen said. “He was not a warm person but the only word I could use to describe him was humble.”

That was enough. Had he attempted to minimize or deflect blame, she said “trust would be lost.”

Christensen waited another year for her second attempt at a double-lung transplant. “The day you have your lung transplant, they get you up for a walk,” she said. Three people were involved: “one holding me up by a belt, one pushing along 10,000 things connected to me and one guy bagging me – all talking about a party they’d gone to that weekend. I was not so worried about the belt holder or 10,000 thing pusher but what if the guy bagging me gets off rhythm?”

She said the level of vulnerability made her relieved to get back to her ventilator “because it didn’t have friends or go to parties.”

“For him, bagging and having a conversation is like me driving a car and having a conversation,” Christensen said. “But for the patient, it does not feel mundane.” Her recommendation: provide reassurance.

Then two years after the lung transplant, she heard two words: “chronic rejection.” She has no memory of any words spoken after those words. Recommendation: follow-up after big news.

“I had to mourn all I’d been through. I was 30 years old and unable to walk to my own mailbox. I had to mourn all the things I thought was going to be part of my life, all the dogs I’d never rescue,” she said.

Recommendation, maybe not entirely in jest: “Get another dog. There is nothing more fun than having a pack of dogs.”

But eventually, she did a second transplant, although she was told it would be harder than the first. Christensen said she was wheeled into the operating room in “full-on panic mode,” babbling to distract herself from fear about American Idol.

“Not one person acknowledged I was speaking. It was the most alone I’d ever felt,” she said. Recommendation: No matter how focused you think need to be on the task, take two minutes to talk to the patient.

The second transplant turned out easier than the first. She was out of the hospital in two weeks. “In ICU, I found what I wanted to do: help other patients and families.”

She joined the Duke Patient Advisory Council, wrote three books and took a job at Duke Hospital as a patient advocate – all aimed at getting patients to trust themselves and to help providers and patients work in what she calls “authentic partnership.”

Recommendation: Teach patients to use the language of TeamSTEPPS or other common safety models and to call a time out so that patients can be effective rather than offensive advocates for their care.

“We’re in the business of communication,” Christensen said. “We can trust the education and skills of the provider. Now the provider needs to help the patient trust himself or herself.”

Jan Johnson can be reached at [email protected].

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