The Empowered Patient: How to Protect Yourself From Hospital Errors

Julia Hallisy recently sent me her book, The Empowered Patient (PatientsafetyCA.org, 2008). It is at once one of the most pragmatic and one of the most moving health care books that I have ever read.

Hallisy's daughter, Kate, was diagnosed with an aggressive eye cancer when she was five months old. Over the next decade, she went through radiation, chemo, reconstructive surgery, an operation to remove her right eye, a hospital-acquired infection that led to toxic-shock syndrome and an above-the-knee amputation. Kate died in 2000. She was eleven years old.

Remarkably, The Empowered Patient is not an angry book. It is not maudlin. To her great credit, Hallisy manages to keep her tone matter-of-fact as she tells her reader what every patient and every patient's advocate needs to know about how to stay safe in a hospital.

First she reminds us of the mind-boggling number of errors that occur in our hospitals every year. "As many as 95,000 people die annually" as a result of adverse events ranging from infections to fatal drug reactions. It's hard to grasp just how many people are dying until Hallisy gives us what she calls "a tragic reference point." The number of lives lost to medical error is roughly equivalent to a World Trade Center attack occurring every two weeks during the year.

Hallisy's 300-page book is eminently readable, and filled with enormously useful detail. As she points out "the media and the government do try to warn us against the dangers we are up against with admonitions such as, 'Make sure all your healthcare providers wash their hands before touching you,' or 'Don't sign blanket consent forms,' or 'Check your medication ... '

"Good advice," writes Hallisy, "but what exactly are you supposed to do to ensure that these things actually happen? Many of you reading this right now don't know that you have a right to customize your consent form."

I certainly didn't.

Hallisy and her husband learned how to keep their daughter safe the hard way. Although Kate was treated in some of the finest hospitals in the San Francisco area, "During all those years of interacting with physicians and hospitals, I encountered virtually every problem a patient and their loved ones can face ... My husband and I became more savvy and educated the longer my daughter's illness went on. As we progressed, we slowly came to realize that the quality of healthcare she was receiving, as mediocre as it sometimes was, was actually far superior to the care other families around us in the hospital were receiving. They began to notice this discrepancy as well, and they wanted to know how we knew the things we did and who had given us such valuable 'inside' information. We had to explain to them that we had come across everything we knew ... by watching our daughter suffer through medical errors, misdiagnoses and inexperienced medical providers, and investigating the mistakes and taking steps to make sure they didn't occur again."

Begin with the consent form. It turns out that if you want to be certain that you know who will be caring for you while you are in the hospital, you should look carefully at the "Terms and Conditions of Service" on your consent form. It may well say:

"Attending physicians may be assisted by medical students, interns, residents and postgraduate fellows during the care of each patient. The patient agrees to treatment by these persons while under the direction or supervision of the attending physician."

Hallisy explains that "direction" and "supervision" have distinct meanings. If the attending physician is "directing" that only requires that he be available for questions. When "supervising," by contrast, he should be physically present and personally overseeing the proceedings.

Of course residents need to practice on someone. Hallisy is not recommending that you "refuse all outright care by medical residents." But she is suggesting that you "not give away blanket permission for inexperienced or unsupervised medical personnel to take care of your health care when a lot is at stake." [my emphasis]