Chronically Ill Patient Speaks to a Disconnect in Healthcare

Swapna Kakani was diagnosed with Short Bowel Syndrome, a chronic rare disease, at birth, and for 27 years she has lived with supplemental intravenous nutrition and a feeding tube. Onstage, at the 2019 Patient Experience Summit, Swapna detailed her experiences in both the inpatient and outpatient settings, and underscored a systemic issue she found in healthcare—a lack of shared, patient-provider decision making.

“At the age of 10, I was in my endochronologists office—just one of the many subspecialists I saw growing up—and he did something I’ve only had one doctor do since. He walked into the clinic room, sat on the exam table, put the chart to the side, leaned to me—not my dad to the left—and said ‘What is your goal? What do you want out of this? How can I help you get there?’ I was shocked! He cared. He was meeting me where I was.”

In 2012, she made the difficult decision to have her dysfunctional bowel removed and as a result, was not able to eat solid food for almost three years. In those three years, despite her constant hunger and craving to eat, Swapna went back to college, graduated with top honors, and gave the commencement address. In 2014, Swapna received a small intestine transplant and she is presently doing well. She remains busy advocating for other rare disease patients.

Her goal is to help people understand the depth of the problem—how a gap in understanding a patient's personal preference can lead to larger healthcare problems. Swapna explains what matters most to chronically ill patients. What do healthcare providers do right? What do they do wrong? Where wasn’t she included in the decision-making process that she wanted to be?


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