A 'miracle patient' — and now advocate — tells his story

Our inaugural Patient Advocacy Conference on June 16 brought together individuals and experts who are interested in improving the health care experience for everyone. I was particularly proud to have hosted Brad Schwartz, a Chicago-area attorney whose nightmare hospital experience gave him a new life's mission: helping patients and their families connect with private patient advocates.

Brad was an otherwise healthy 37-year-old when, one Mother's Day, he experienced the worst headache of his life. Paramedics put his symptoms down to wine he had consumed the night before, and the triage system in the emergency room evaluated him as a low-risk patient.

He spent nine hours in the ER. “My family and friends tried to help but they didn't know what to do,” he told our attendees.

His fever spiked to 105. He was moved to the intensive care unit and sedated. “I do remember the frustration and fear, knowing something isn't right,” he said. The medical staff were not the regulars, which we see lot today with staff shortages in hospitals. His blood work, which revealed elevated white blood cell counts and dropping platelets, came back during a shift change.

“Doctors and nurses are human,” Brad said. “They get overwhelmed like anyone else. But it may put people's lives at risk.”

He had bacterial meningitis, which was not immediately recognized by the medical staff. It turned into sepsis, a potentially deadly blood infection, which also went untreated. He was placed in an induced coma for a month until his hands and feet had to be amputated due to gangrene and necrosis. On top of that, his long hospital stay led to several hospital-acquired infections.

As his organs started shutting down, Brad was transferred to another hospital where he could receive life-prolonging dialysis for his failing kidneys. A doctor there looked closely at his records and found some pretty egregious errors and omissions. For example, it was written in his chart that he had refused antibiotics when, in fact, he had never been offered antibiotics.

The doctor even printed a copy of the records for Brad to review. “I'm not a doctor, but I know how to read a medical record,” he said. (By the way, the 21st Century Cures Act makes it clear that a patient's records belong to the patient. Never hesitate to ask for them.)

Having finally received correct treatment, Brad painstakingly recovered his health and went back to work as a litigator. He represents those who have gone into septic shock, have received poor medical treatment, are fighting with insurance companies and are dealing with other health care issues.

And he started a nonprofit, Greater National Advocates (GNAnow.org), where patients and their loved ones can find independent patient advocates in their area.

The National Academy of Medicine estimates as many as one-third of all hospitalized patients will suffer some form of preventable harm during their hospital stays. I know from personal experience as an advocate that miscommunication or lack of communication is a major source of medical error. Advocates fill the gaps in the system.

Loved ones have authority and strength to advocate, but when might it be time to consider an independent advocate?

“If you have more than two doctors, that's a great marker for when you should get an advocate,” he said. “That means your care is in the hands of more than one person, and communication problems can arise.”

Brad pointed out that when we have a complicated legal issue, we consult lawyers. When our taxes get complex, we find a CPA to help. It's the same with complex medical conditions.

He added several other considerations: “Anytime you don't understand the diagnosis, you don't understand your medications, or when you feel like you're getting the runaround. Advocates use what they know to help people. They're part of an alternative care team outside the system to make sure things don't fall through the cracks.”

Families and patients pay out-of-pocket for advocacy services. “That's good and bad,” Brad said. “I don't know that Medicare, Medicaid and private insurers will ever pay for an advocate to fight against them.” On the other hand, an advocate who's being paid by a family knows who they're working for and where their loyalties lie.

Not everyone needs a nurse advocate or doctor advocate. There are insurance experts, social workers and other professionals who can help. It's important to find the right fit and the right price.

Brad Schwartz is a hero to me. He survived a horrifying health care experience and has found a way to make the system work better for others. He turned lemons into lemonade for the whole country.

• Teri Dreher is a board-certified patient advocate. A critical care nurse for 30+ years, she is founder of NShore Patient Advocates (www.NorthShoreRN.com). Her new book, “How to Be a Healthcare Advocate for Yourself & Your Loved Ones,” is now available on Amazon. She is offering a free phone consultation to Daily Herald readers; call her at (847) 612-6684.