The Empowered Patient

When you or a loved one enters a hospital, it is easy to feel powerless. The hospital has its own protocols and procedures. It is a “system” and now you find yourself part of that system.

The people around you want to help, but they are busy—extraordinarily busy. Nurses are multi-tasking. Residents are doing their best to learn on the job. Doctors are trying to supervise residents, care for patients, follow up on lab results, enter notes in patients’ medical records and consult with a dozen other doctors.

Whether you are the patient or a patient advocate trying to help a loved one through the process, you are likely to feel intimated—and scared.

Hospitals can be dangerous places, in part because doctors and  nurses are fallible human beings, but largely because the “systems” in our hospitals just aren’t very efficient.  In the vast majority of this nation’s  hospitals, a hectic workplace undermines the productivity of  nurses and doctors who dearlly want to provide coordinated patient-centered care.

At this point, many hospitals understand  that they must streamline and redesign how care is delivered and how information is shared so that doctors and nurses can work together as teams. But this  will take time. In the meantime, patients and their advocates can help improve patient safety.

Julia Hallisy’s Story

Julia Hallisy learned about patient safety the hard way. 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.

“My husband and I spent years of our lives in hospital hallways, waiting rooms, and emergency rooms,” Hallisy recalls. “We became savvier and more educated the longer my daughter’s illness went on. . . .

“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.”

Kate was treated at some of the finest hospitals in the San Francisco area.

She died in 2000. Kate was eleven years old

                             Empowering a Patient,  an Advocate, or a  Survivor

How could a mother handle such unspeakable grief? Hallisdecided to write a book that might help others. In 2008,  I reviewed it on HealthBeat.

At the time I wrote: “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.”

Recently, Hallisy emailed to tell me know that the book has now become a non-profit foundation: The Empowered Patient Coalition.

Go to their website and you will find fact sheets, checklists, and publications including, A Hospital Guide for Patients and Families that you can download at no charge. I found the Hospital Guide eye-opening. I have read and written a fair amount about patient safety in hospitals, but it told me many things that I did not  know.

For instance, did you realize that it is perfectly appropriate to ask your surgeon how many times he has performed this particular operation?

Are you aware that you (or your advocate) can—and should—read your medical records while you are in the hospital? (This may be the only way you will find out that your doctors disagree with each other about your treatment.)

Do you know what to do if you if you request a consultation with a more experienced physician because you have serious questions about the decisions made by residents –and hospital staff don’t agree that you need to talk to someone higher up on the ladder?

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