Navigating the health-care system can be like running an obstacle course. All aspects of the process, including doctor appointments, hospital visits, rehab stays, prescriptions, and calls with insurance companies, present potential hazards. In How to Be a Patient (Harper Wave, Mar. 2019), Goldberg, a public health advocate and nurse with a background in clinical research—her TEDxHarvardCollege talk, “What If You Became a Nurse?,” has been viewed more than 250,000 times—offers advice on advocating for oneself and getting the best care possible.
Have you seen, firsthand, patients struggle with the health-care system?
When I was working in geriatric care, I noticed this trend wherein people would interface with the health-care system—whether it was a routine medical encounter or something like a surgery or an emergency—and come out of it really confused. There’s a general sense that medicine can go over the head of a layperson. But the system had become so disorganized that people would leave these encounters and not even understand the diagnoses.
Have you personally experienced this sort of confusion?
Almost at the time I was in that role, my grandfather had a cancer diagnosis and was in the hospital. Even with my educational background and my investment in the proceedings, I felt really in the dark.
Why do you think the system has become so hard for patients and their families to navigate?
First, it’s time. As we’re attempting to care for more and more people, the average length of a medical encounter has been drastically cut. It’s that combined with technology, such as electronic medical records, which can streamline things and protect against medical error but which also has sidelined human relationships and person-to-person communication. I don’t think anyone is really taught, as a patient, what they can do to advocate for themselves in that kind of model. To get better care, it requires more agency on the part of the patient.
What are some things patients can or should do that they often don’t?
Look at health care as preventative rather than reactive. Having a primary care provider, for example, is something you can do to advocate for yourself, because they’re your entrée into the medical system. If you’re trying to see a specialist, often you need a primary care provider. If you have a chronic illness and you’re going to different clinics and specialists, you need somebody who can work with you to coordinate all that care. That’s a big issue: we show up and expect that Doctor A talked to Doctor B and that they’re all on the same page. In reality, that’s not happening.
What role can nurses play in helping patients to navigate health care?
As a nurse, so much of my education was about how to advocate for patients. Nurses are typically spending significantly more face time with a patient than the provider is. They’re the gatekeepers of all the information coming from the medical system.