Becoming an Empowered Patient

August 27, 2010, 11:13 am
Becoming an Empowered Patient
By TARA PARKER-POPE

As a longtime medical correspondent for CNN, Elizabeth Cohen understands the complexities of the health care system. But she is also a veteran patient, having coped with serious medical crises related to two of her pregnancies and having supported her mother after a misdiagnosis and later kidney transplant.
Elizabeth Cohen

It was the combined effect of these experiences, she says, that prompted her to begin her online column, “The Empowered Patient,’’ which she turned into a book published this month by Ballantine. This week I spoke with Ms. Cohen about her book and the potential for every patient to take charge of his or her health. Here’s our conversation.
Q.

How did your own experiences with the health system influence your decision to write this book?
A.

What these three experiences had in common is that it made me see that the Dr. Marcus Welby days are over, and you really have to advocate for yourself. This system doesn’t work perfectly. Sometimes it doesn’t even work very well. You have to step in sometimes and make things right. In the course of my reporting I have run into a lot of people in the same situation.
Q.

You write in the book about feeling helpless at the hospital in your effort to influence the care of your infant daughter. What happened?
A.

About 48 hours after she was born she had seizures. The doctors ordered spinal taps to assess whether she had an infection. But when they discovered she didn’t have an infection, the doctor said good news, no more spinal taps. I woke up the next morning to visit her in the NICU, and discovered she had just had another spinal tap, and they were about to give her another one. I told them, “No,” she wasn’t supposed to have any more, and they said, “We don’t have those orders.’’ I was insistent. I sat down and said, “I’m not moving.” I was crying hysterically, and they ushered me out. Back in my room, I finally calmed down enough to tell a nurse named Sarah what happened. She went up there and stopped them from doing an unnecessary spinal tap. It was terrible.
Q.

You were fortunate to find a nurse to help, but does a patient really have any power to make things better?
A.

Yes, you do have power. I should have said to the NICU nurse, “You do not have my consent or my husband’s consent to do another spinal tap.” I should have realized I do have the power to stop it. I should have written it down and handed it to them. I should have called the hospital ombudsman and said, “They are about to do a spinal tap on my daughter that they’re not supposed to do.’’
Q.

Does this mean you have to fight to get the right care for yourself or your family?
A.

You shouldn’t have to fight, and most of the time you don’t. But sometimes you do. The e-mails I’ve gotten since the book started have been unbelievable. I think most people have a story of something that hasn’t gone quite right. You do feel small. Especially in the hospital. It’s their world, and you’re just visiting. But there are things you can do, and there are people out there who can help you. There are nurses — even if it’s not your nurse, there may be another nurse in the hospital who can help you. When you have insurance problems, there are agencies out there to challenge an insurance company denial. The people in your benefits office are there to help you. There are people to go to when things aren’t working out. You just have to know how to do it and how to think through your options.
Q.

What are some of the ways your book helps someone become an empowered patient?
A.

The first chapter is called, “How to Be a ‘Bad’ Patient,” but the word “bad” is in quotes. I think too many people, especially women, want to please their doctors, and they are afraid of making doctors angry so they don’t ask questions or challenge the doctor. It’s important to learn how to be a bad patient sometimes. I think it puts people in the mindset to get the right kind of care.
Q.

How do you distinguish between being an assertive patient and being a difficult patient who alienates your doctor and staff?
A.

I know that you can be an empowered patient without being an annoying patient. I know because I myself have done it. It is sometimes a thin line, and you do want your doctor on your side. But you also want to make sure you’re getting the best care possible. I write in the book that doctors have saved my life and the lives of people in my family. I’m the daughter of a doctor, the granddaughter of two doctors. I’m not bashing doctors at all. I’m saying that when you’re sick, you need to think through your illness and all your options.

http://well.blogs.nytimes.com/2010/08/27/becoming-an-empowered-patient/