Elizabeth Cohen’s publishers call her book, The Empowered Patient, a “rallying cry.” They’re right. For years, both as CNN’s senior medical correspondent and as the author of the Empowered Patient blog on CNN.com, Cohen has repeated a simple and powerful message: ask questions.
Cohen believes that we, as patients, have the power to influence our health and medical care. Unlike many books and blogs on medical care, The Empowered Patient steers almost entirely clear of ideological debates and focuses on how to get the care you want.
When Cohen introduced her new book on her blog this summer, she told her story of why she writes the blog. Her daughter, Shir, was admitted to the NICU at 48 hours old after having seizures and turning blue while in her arms. In what she calls her own postpartum fog, Cohen shuffled the hallways and elevators of the hospital to be with her baby, who had been examined by a team of specialists trying to pinpoint the cause of her seizures. The Cohens agreed to a spinal tap for Shir to retrieve fluid from her spinal column to rule out a life-threatening infection as the cause of her seizures.
Luckily, the seizures were determined to be a fluke and the Cohens were informed by one of Shir’s doctors that there would be no more spinal taps. He ensured the anxious parents that they could see a brand-new Shir the next morning in the NICU without all of the needles and no longer doped up on barbiturates.
Elizabeth Cohen made her early morning jaunt up to the NICU, excited to see her beautiful baby awake for the first time in two days. She walked into the NICU and was horrified to find the Shir was in the same state as the night before. She wrote on her blog:
The nurse checked the chart. “There were no orders last night,” she told me. Then it got even worse. “That spinal tap they just gave her didn’t work. They got the needle into her spine, and they tried, but they couldn’t get any fluid out because she’s dehydrated. They’ll try again in an hour.”
I couldn’t believe what I was hearing. Not only had my baby had one unnecessary spinal tap, but now she was about to have another. I had to stop them. I had to become an empowered patient.
In her postpartum fog, Elizabeth Cohen rose to the challenge and advocated for Shir. In her book, she wrote:
Nothing has prepared me for this moment: the moment I would have to protect my daughter against a system bent on doing the wrong thing. Not my public-health degree, not my twelve years as a medical journalist at CNN, nothing.
A few years later, Cohen also aided her mother in advocating for herself, which was difficult for her mother given the cultural attitudes toward doctor infallibility with which she grew up. Cohen’s “why” extends beyond her family, as it is clear from her book, her documentary premiering this weekend on CNN and from our phone call. Her personal experiences merely opened the door to deep empathy for the struggles of the patient, some of which could be somewhat resolved with a deep breath, a commitment to being assertive, researching and asking questions.
When I received her book in the mail, I was surprised by how short it was. After I read it, I was amazed at how much information was packed into those 216 pages, especially with all of the personal stories carefully interwoven with solid advice.
Like many women fortunate enough to count on good health throughout life, Cohen’s only hospital admissions have been for her four pregnancies. Coming face-to-face with the health care system during pregnancy can provide anyone with a crash course in patient advocacy. Cohen and I discussed the unique challenges of being an empowered pregnant patient, which is transcribed below.
Jill: Evan Handler has found strength in being a self-described “bad patient”. You are a proponent of asking questions and being what might be viewed as a “difficult” patient. How do you think that we can get to a place in the U.S. and beyond where pregnant women can feel confident that their autonomy will be respected while pregnant, during labor and during their postpartum hospital stay? Do you see this something as systemic with maternity care or is this something across the board in just health care in general?
Elizabeth: You know, I’ll tell you… I’ve been writing the Empowered Patient column for over three years, since July ‘07. We offer solutions. We don’t just talk about problems rather than solutions. And solutions for what to do in the emergency room when the doctor says it’s time for a c-section and you want to make sure it really is time for a c-section. Of all the topics that I’ve written about, empowering yourself in the labor and delivery room is among the most difficult because these are decisions that have to get made quickly. You’re giving birth and the temptation to just believe what your doctor says and to go with whatever your doctor says… the pressure to do that is enormous. It’s very difficult to say, “What do you mean I need a c-section? I don’t think I do. I want to keep pushing.”
When a doctor is looking you in the eye and saying, “For the safety of your baby, I think you ought to have a c-section,” it’s very difficult to challenge that, and in some cases you shouldn’t challenge that! In some cases a cesarean really is necessary, but in many cases, it’s not. I’ve had four children and I think it’s very difficult to — when someone says the safety of your newborn baby is at stake how do you argue that?
Jill: You don’t! In my case I had the benefit of having time, you know. They wanted to plan a cesarean and I said, “let me research it” and found that it wasn’t really [necessary] but in the moment, there’s no way I would have said no. It’s so rare to say no or to question.
Did you find that there was a difference being a pregnant patient and a non-pregnant patient?
Elizabeth: You know, I think the only time I’ve ever been a patient was when I was pregnant. Thank God I’ve been blessed with this health. I’ve never been to the hospital except to deliver my children. I’ve never been seriously ill except for the pre-eclampsia I had when I was pregnant. I’ve never thought of this before but, except for relatively small things, the only times I’ve really been a patient were when I was pregnant.
In the book I tell the story— I don’t know if you remember this one— of having an IV in my hand and my hand got very swollen. It was very painful and I was having trouble lifting up my hand and the nurse said, “Oh, that just happens. Don’t worry about it.”
This was my second child and I learned from my first experience to say, “This is not okay. This is not normal. Please get me someone from the IV team.” I knew about IV teams from my first experience. I think that I really learned to be firm. She harrumphed but eventually she did get someone from the IV team who came in and said, “Oh my goodness! Look at that hand!” and fixed it in a minute.
Jill: That was a terrifying story, honestly. [Note: I later realized that I had mixed up this story with Cohen’s story in her book about almost dying in 1997 after a twelve hour delay in receiving IV calcium. IV swelling is not terrifying.]
Elizabeth: I think what it was… it wasn’t dangerous. I wasn’t going to implode. Probably nothing terrible was going to happen but it hurt and I couldn’t move my hand and that is not okay, especially when there is such an easy fix.
Elizabeth: I think she was covered by a local station or newspaper and I thought, “Wow, this woman is going to have to drive— I forget what it was— six hours? It may have even been on your blog. That might have been how I found it because you had it up on your blog before I did the story, right?
Elizabeth: OK, then it was through your blog. That was how I found it.
Jill: Oh, wow.
Elizabeth: I just couldn’t believe that she was going to have to drive six hours to have a vaginal delivery. One of the things that it showed me is that people sometimes hear something from a doctor or a hospital and think that it’s the way it has to be. Joy was empowered enough to know that there were probably other people who felt differently.
Her doctor and her hospital might have said, “You’ve got to have a c-section,” but she knew enough to check around and she found a doctor at a very reputable hospital who said, “No, we’ll do it.” And, you know, everything went smoothly.
Her story taught me a lot about the need to look around. When a doctor tells you, “This is the way it is,” you need to take a moment except in a case of true emergency. You know, if you’re bleeding to death, you’re not going to get into this. But if it’s not a true emergency, you have time to go out and look around and check out your options and see who does things differently.
Jill: What did you think about the reactions to Joy’s story?
Elizabeth: I remember that some people were like, “Yeah, go Joy!” and others said “You should get a c-section.” It is interesting to me and I’ve seen this with other stories. People have very strong opinions about how other people handle their own medical care and that’s especially true with pregnancy and delivery. People get very opinionated about how other people have their babies. I guess I didn’t really understand that.
Jill: I don’t understand it, either, because I know people have tried to pigeonhole us— me and my co-bloggers. We’re more concerned about people who are seeking a vaginal birth or seeking something and can’t find it.
Elizabeth: Birth is… it’s a very disempowering experience to be in a delivery room and have the doctor say, “You need a cesarean section.” And maybe you do, but you what? Maybe you don’t. It’s just not a great time to start asking questions, but in some cases, you really should.
Jill: That makes a lot of sense. The time to start asking questions is when you’re pregnant… or before you get pregnant.
What has the reaction been to your book? Has everyone been pretty positive about it?
Elizabeth: I think there are some doctors who don’t like my message. I think there are some doctors who prefer the patriarchal system that we all used to work under. And then I think there are other doctors who fought it. I get a lot of wonderful e-mails from doctors and nurses who say thank goodness you’re saying what you’re saying.
I definitely hear from doctors who say, “Why are you encouraging patients to disregard what their doctors tell them! And I say, “I’m not doing that. I’m encouraging people to ask questions.”
Jill: What are some of your favorite books on patient advocacy?
Jill: Were there any pregnancy and birth books that you were drawn to when you were pregnant?
Elizabeth: I liked Your Pregnancy Week by Week. I enjoyed reading that one because I was very interested in knowing what does this little thing look like at week 15 and what is it doing and not doing. I loved learning about that. I also enjoyed The Girlfriends’ Guide to Pregnancy. I just howled through that book.
Jill: Obviously writing this book entailed a huge amount of research. Did you come across anything in the process that surprised you?
Elizabeth: Until I started dong the research, I didn’t realize how strong the influence of medical marketing was. I knew medical marketing existed— I’ve sat next to the drug reps in the waiting room. I didn’t realize the extent to which it influences doctors’ decision making and I didn’t realize quite how much money the drug industry is spending on influencing doctors. That part was definitely interesting.
I loved listening to all of these patients and loved hearing how they handled their particular situation. There was a woman I wrote about named Suzanne Atryzek whose daughter, Molly, had cancer at 15, and just to hear that she had to fight to make sure that her daughter got the pain relief that she needed… the pain medication that she needed for certain procedures. You know, I pictured her in the hospital fighting for her daughter and I thought what a hero she is.
Jill: Yes. What a hero she is. When you’re advocating for someone, it can become all-consuming. It’s huge.
Elizabeth: It’s a huge role, it is. I’ve had to do it here and there but the real heroes are the ones who do it for people with long term illnesses. I mean, Molly was in and out of the hospital for months and months and months. That was the most inspiring part of the book was listening to people who had advocated for their spouses or children for many months or many years.
You think that when you tell the story that she fought to make sure that her daughter got the pain medication that she needed for certain procedures, you might think, “Well, of course you’re going to advocate for your child!” But in reality, it’s a lot harder to do than it sounds. When a doctor is telling you, “This is the way we do it” or when several doctors and several nurses are saying, “This is the way we do it,” it’s hard to speak up and say “No, we’re going to do it differently.”
Jill: Why do you think that is?
Elizabeth: I think hospitals are like any other place. They have ways of doing things and they do it day in and day out, year after year, and it usually goes well, so when you’re pointing out something that’s not going well…
For example, when I said to the nurse that my daughter was not supposed to get a spinal tap, this was a nurse who had been working there for years, reading charts and following orders that she’s supposed to follow. Usually things go right and I think it’s hard for them to imagine that sometimes things go wrong. Something that you’ve been doing day in and day out, year after year after year successfully— sometimes it won’t go right and I think it’s hard to get yourself out of that routine.
Jill: That’s very insightful. I’ve talked to care providers in hospitals and it’s the same thing: it’s hard to change practice.
Elizabeth: It is. I did a story about at Intermountain Healthcare in Utah about how they saved money. They managed to drop their c-section rate to 20%. In order to do that, you have to change the way doctors practice and the leadership there told me it’s hard. It is hard to say, “The way you’ve done things your entire professional career? You’re changing it. You’re going to do it differently now.” That’s hard to do. One of the things they changed is that they don’t have inductions for first time moms. They have specific rules about when you can induce and when you can’t and the doctors have to follow them. It’s hard to change practice.
Don’t miss Elizabeth Cohen’s documentary, The Empowered Patient, on Saturday, October 2, 2010 at 7 p.m. and 10 p.m. ET on CNN. The program will also air on Sunday, October 3 at 2 a.m., 7 p.m. and 10 p.m.
Disclosure: The author of this post received a free copy of the book from the publisher.