One Patient’s Quest to Be Heard

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CMS’ 2014 QualityNet conference featured a series of Master Classes, including Real Talk: A Patient and Family Engagement Experience.” Jeanine Pilgrim, the National Learning and Action Network (LAN) Coordinator and Patient/​Family Engagement Project Manager for the End-Stage Renal Disease (ESRD) National Coordinating Center (NCC), introduced one of many patients whom the NCC is seeking to empower through education and involvement in their own care. That patient, Jasper Travis, shared his story and gave a powerful message to providers and patients.

One morning, like so many others, Jasper Travis was at dialysis for his kidney disease. He felt that something was amiss, so he informed his nurse that he didn’t feel well. Unfortunately, she dismissed his claim and told him that she would come back later to check on him. 

Four hours later, Jasper still didn’t feel well, but the nurse’s shift had ended, and she had gone home. Without any further medical examination, Jasper went home with a lingering question in his mind about whether nurses really hear patients – or if they just listen.

Later that afternoon, Jasper had chest pain, and his wife took him to the hospital. They put him in a wheelchair and rolled him to intensive care, where doctors informed him that he had pneumonia.

Jasper’s message to providers was simple: Start truly hearing your patients. Get to know the patient, not the disease. Since renal disease patients spend so much time at dialysis, providers should use that opportunity to get to know their specific needs.

For patients, Jasper’s message was equally important: Get involved in their own care to improve their quality and length of life.

The best advocate is you,” he concluded.