A blueprint for high-volume, high-quality lung cancer screening that is detecting cancer earlier—and helping to save lives
Theresa Brown earned her PhD in English from the University of Chicago and taught writing at several universities before switching to a career in nursing about 10 years ago. She is a prolific writer, contributor to the New York Times, and a speaker on nursing, health care, and end-of-life issues. Her most recent book, The Shift, is her stirring, first-person account of working a 12-hour shift at an oncology unit at a teaching hospital. Brown now works as a hospice nurse. She lives in Pittsburgh with her husband and three children.
You quote a William Blake poem in The Shift. Was your dissertation on Blake?
No, actually it was on 20th Century American women writers. But I love poetry. I love romantic poets. And I was talking to a friend about the idea for the book, and she said, “Oh, it’s like that Blake poem—‘a world in a grain of sand’ and ‘eternity in an hour.’” She quoted the lines to me that I end up quoting in the book. And I looked at it and thought it was perfect.
Theresa Brown, RN
How did she pick up on that?
It was the idea that in one 12-hour shift, you can find the whole world. I wanted to find a way to tell longer stories, and paradoxically, I realized that I could do that by telling the story of one shift, because so much happens in every single shift. It would be a way for readers to get to know a small number of patients pretty well and also get this slice of each of their lives, and then, together, it adds up to a whole picture of life in the hospital. And the big questions, too: life, death, what does it mean to survive? What does it mean to have someone you love not survive?
And also the notion of working a shift. That you leave it behind and hand it off to someone else and then pick it up tomorrow.
That’s right, yeah. We try to leave it behind. We don’t always succeed. But that’s the goal.
One thing that struck me is your observations about the little things—blood billowing like silk into a saline solution when you are testing a PICC line. Nursing would seem to be great material for a writer. You get this up-close relationship with all sorts of corporeal things like blood and body parts. Is there a thrill there?
I think everyone starts with that, but then it wears off or mellows into respect. I don’t know if it’s that I have affection for blood as much as I really appreciate it now. I appreciate everything that it does, and how important it is in a very detailed way for our survival. And I have this incredible respect for the complexity of the human body and all the things that go right all the time. And then, one thing goes wrong, and what does that mean?
I do think everyone in health care is a little bit of an adrenaline junkie. For me, I think that mostly wore off. Your first few codes you’re like, ‘Oh, it’s a code,’ and you get this adrenaline rush. But then, you realize that it’s a person’s life on the line. So, that whole idea of drama in real life is a lot more complicated because there’s pain, and there’s suffering, and questions about whether can we save them and how much we can do.
Let’s talk about the nurse’s role in health care. In The Shift, you quote articles by Leonard Stein, one in the ’60s in which he says the unwritten rule was that the nurse had to make sure that everything she suggested seemed to come from the doctor, and then a second one in the ’90s in which he writes about the nurse being a kind “corrective agent” to the doctor. How do you see it now? Do you see the relationship as being different in 2016?
Ideally, yes. I think we are moving toward more of a model where nurses and doctors are colleagues, so you don’t have to play these games. But, depending on the physician, and to be fair, depending on the nurse, you can still get all these permutations.
How much is gender a factor? An increasing number of physicians are women and a minority of nurses are men.
I would have said it’s getting more gender-neutral, but I gave a talk recently to a group of physicians who said that women residents have a much harder time with the nurses than the guys do. The male residents seem to interact socially with the nurses more easily, and that nurses are less likely to see the men as bossy, whereas with the residents, the women almost have to prove themselves to the nurses. Then the nurses will trust them and work with them and be friends, and it’s very collegial.
That was very hard to hear—that, for a variety of reasons, women nurses may tend to give these physicians who are women a much harder time at the start of their careers as doctors.
We occasionally lapse into jargon at Managed Care and talk about nurses and other people being ‘physician extenders.’
I hate the term physician extender. I feel it is insulting to nurse practitioners and physician assistants who are licensed, trained professionals and have their own responsibilities.
The really odd thing about it is that there just aren’t enough doctors in the U.S. right now, especially in primary care. And there are a lot of NPs who would like to do that work, and data show that NPs are just as good at delivering primary care as physicians. And yet, there’s such resistance among some quarters of MDs to allow that to happen. So, it’s just a bad and sort of stupid situation where there aren’t enough doctors to do the work that doctors need to do, and yet, we can’t just acknowledge that and give these people credit for the work that they’re doing. They have to somehow be like, you know, the doctor’s third arm or something.
I think calling a person a physician extender is really insulting. I really don’t like it. I understand why people use the term, but I really don’t like it.
You get funny, in kind of a dark way, in the book when you got into a rant about charting and the time it takes away from providing care. But all this charting does create information and data that presumably can have some benefit. Do you have any thoughts on how the charting and the electronic health record could be improved?
We need across-the-board interoperability, because right now, we have all these charts, but oftentimes systems can’t speak to each other. So then you have the worst of both worlds. You’re spending all this time putting information in a computer, and if that patient goes to a different hospital, or sometimes a doctor’s office, no one else can look at that. So, you constantly have patients repeating their history, you have med lists that are inaccurate that don’t get transferred from place to place. To me that’s just a real mistake.
Also, I think there’s a lot of charting that gets done to meet regulatory requirements, and I completely understand the importance of that. But I don’t think the people making the regulatory requirements ever think about, how can we have the charting be more clued into what the clinician needs to be doing with the patient?
So, for example, I know with physicians, they say you just get a lot of cut and paste now because there’s a requirement of every x number of days, there has to be a history and physical. It sounds like a good idea, right? “Let’s always have a history of a physical, or history of present illness.” But, because no one has the time to do it the way the regulatory people are imagining, you end up with a document that really doesn’t mean that much because it’s just pieces of all the documents that went before it.
This is something I’ve heard about from MDs. It’s been written about, too. It’s not a secret.
Any thoughts on solutions?
One thing that occurred to me is just to have tablets. They tell us there’s a computer in the room, so can you chart in the room, but my experience is that patients find that very alienating to have someone standing there, talking to them—not just someone, but the nurse—and looking at the computer. And I think most of us don’t like that.
If nurses could have tablets, if you could just pull up, for example, a fall assessment on an iPad, and just make it something so simple that you could just tap, tap, tap while you’re talking to the patient. And then you could be doing the fall assessment while you’re talking to them instead of having to get your cursor on this little tiny thing that registers a drop-down menu, that then gives you another drop-down menu.
There’s no sense of how can we make this software so that people can use it in real time while they’re interacting with a real person so that it works for everyone. It seems like that would be possible. We make little computer games for a 3-year-old to play with, right? There’s got to be a way to make the human interface better.
Sometimes the answer seems to be the portability of the gadget. And it’s like what you wrote about hospitals, using the title of the Hemingway story: The interface should be a clean, well-lighted place.
That’s excellent. I like that.
You also talk about work-arounds. I saw that there’s a book out now about the ethics of work-arounds. Work-arounds, you’re kind of breaking the rules, right?
Yeah. I mean, it depends on what the work-around is. I try to be very strict with myself.
When we instituted barcode scanning at my hospital, huge numbers of work-arounds sprang up because the software wasn’t that good, and the scanners didn’t often work. So, the work-arounds were put in place because we were given equipment to work with that couldn’t really do the job. That ended up becoming feedback that management needed to hear—and was not always happy to hear, or going to fix with alacrity. But yeah, were people breaking the rule? Yeah, they were.
There was a point where you could have lied on the chart, but I guess you didn’t.
People lie on the chart all the time, right?
I cannot answer that. [Laughs.] I think there are a lot of situations in the hospital where, again, there’s certain regulatory requirements or things that are done for safety, and at times they just make doing the work incredibly challenging. So, I think the example for me was hanging the Rituxan, and I’m supposed to be in there at specified times and take vital signs. I was able to do it that day. But you’re not always able to get in there at the right time, and then, the question is, do you write down the real time? The time you were supposed to be in there? I write down the real time. It’s tough.
Opiates are in the news a lot. You discuss pain—the mantra about keeping ahead of the pain but also an undercurrent of suspicion about people with pain. Where do you think things stand in terms of the medical system dealing with pain and what seems to be a swing against opioid medication?
I think on this a lot because, for example, my daughter recently had emergency surgery, and she’s fine, but she’s 15, and the resident had prescribed an IV narcotic, and the nurse really didn’t want to give my 15-year-old a narcotic. She found a substitute that worked.
IV Tylenol. But then they sent her home with oxycodone. So, there I am as a mom, and I’m like, “What is going on here? This is so strange.” Because here’s my daughter, not really getting fully the level of pain relief that would have made her the most comfortable, but enough that she could sleep and she wasn’t miserable. On the other hand, there’s this worry about using a narcotic if we don’t need it because there are so many risks associated with it. And I find it so difficult that there are patients in pain who don’t get pain relief.
I see that with hospice care, too, when families have a hard time giving their loved ones narcotics. But at the same time, we have this explosion of addiction to prescription pain killers, and even heroin. So, I’ve been thinking about this a lot. I don’t really have anything smart to say about it yet. [Laughs.] For now, I find it a very troubling paradox.
One thing you write about in your book is the separation of outpatient care and inpatient care. There’s a passage where you talk about when people come to the hospital, the oncologist that they may have been seeing all along is left out of the picture. The intensity and isolation of the hospital from the rest of the health care system seems to be growing.
That’s a very smart observation. It is like a divide, and I think it is growing as hospitals become more and more complex. And the whole idea of the doctor who does rounds and sees all of his patients, and it’s six in the morning, and then he goes and does clinic, and consulting phone calls, really looking after people while they’re in the hospital. I think it gets harder and harder for people to make that work. That’s why the hospitalist came into being.
Maybe it doesn’t make sense anymore...?
I don’t know. It’s very hard for patients to have a relationship with a physician they know and trust, who knows their history, and then go in the hospital and have a new doctor come in and take care of them. I don’t know if the public has to outgrow this idea of, you know, you have “your” doctor. I mean, I certainly know with my children and the practice we took them to, there were a number of clinicians and you sort of got whoever is on call. You just have to be prepared for that.
But I think, especially if it’s something like cancer, it’s very hard to not have that person you trust be there with you in the hospital. That model may just not work any more. It may be like what you’re saying, that the difference between hospital care and outpatient care is now so large that you need to have a physician or a nurse practitioner or PA looking out for you who really knows how the hospital works, because they’ll know how to order the tests, they’ll know who to call. They’re just such complex systems now.
There’s a lot of attention being paid to the patient experience, that it can be measured and reimbursement rates are being adjusted according to patient experience scores. How do you view the efforts to factor in the patient experience into health care?
I think it’s very, very important. I object to how we’re doing it. I wrote a column for the New York Times about this and called it, “Hospitals Are Not Hotels.” For a hotel, you can answer questions like “Were you satisfied with the room service?” or “Was the bed comfy?” But those kinds of questions aren’t appropriate for a hospital. You might have things done to you that hurt. You maybe can’t eat because your body is not going to be able to digest food. You might get cut open and have part of your insides removed, which I think is fundamentally unsatisfying. So, I don’t see us having a sophisticated way to evaluate those things about care that are really, really difficult.
One question that is asked is whether you recommend this doctor or hospital? That seems to get beyond satisfaction to experience, maybe.
Right, and I definitely think a lot of the questions they ask are very important. “Did you know what was going to happen?” “Did you understand the things that were said to you?” All that stuff is very important. But, when you get into, you know, “Rate this hospital on a scale of 1 to 10,” I don’t like that because there could be reasons why people feel like, I hate this hospital, and it’s because that’s where their husband died. And in oncology, we have patients who love the care they got, but they feel like, “I never want to come back here again. Everything bad in my life happened here.” So, how do you evaluate our competence while still allowing them to be angry—if they are angry? That’s the challenge.
In your book, you write about hospital administrators needing to get “heads in beds” and wishing for a slower pace in the hospital but that the situation won’t change until caring becomes as lucrative as tests and procedures.
I’d love the idea that there’s a way you could chart for caring.
That seems to be where we are headed when we’re allowing doctors to code for end-of-life discussions—it kind of gets at that.
There’s a lot of patient education that nurses do. If you have a new diagnosis of leukemia, I’m going to tell you a lot about that, which is intense and occurs over days and weeks, or, here’s how to take care of your wound when you go home post-operatively. And we’re required to do that, but there’s no specific charting for that. Wouldn’t it be great if we could? You know, what did you talk about? How long did you talk for? But that’s it. It needs to be simple. It can’t be that you have to do a multiple drop-down menu of assessment of your patient education because then you’re doing that instead of doing the education.
Value-based care—what do you think of it?
What I know about it, I like it. I think it doesn’t communicate that well to people who don’t know what it is, unfortunately. Of course, a clinical person would say it depends on who is defining the value. When you talk about patient satisfaction, people can get really into that, especially patients: “Yeah, it is about my experience.” And when we say value-based care, they’re like, “What’s that?” It sounds like you’re cutting coupons for the grocery store.
But the whole idea of looking at everything that happens in a hospital and saying, “Does this benefit the patient?” Fabulous.
Now you’re involved in hospice care. Why the switch?
The truth is, after working in hospitals and writing a book about hospitals, I felt like we never see people at their best in the hospital. We’re always telling them what to do, and when to do it, and so many rules. I wanted to see people in their homes, to see what that’s like and what I could learn from that which could, maybe, be applied in the hospital. It’s just been incredibly rewarding to see people in their homes and have to go in and be a guest. That’s the best piece of advice I got from a long-term home care nurse. I said, “What’s the one thing I should know?” And he said, “Always remember that you’re a guest in their home.”
Not nearly as exciting, right?
It is. It’s just a different kind of exciting. Hospice has its own deep kind of excitement because you’re always dealing with the fundamental questions. You don’t get the adrenaline rush of coding someone, but it’s really a sense of grace that can come with doing that work, contemplating mortality, and helping people contemplate mortality. It’s difficult and very rich.
Are you writing a book?
Everyone keeps saying that to me. I have some thoughts. That’s about as far as I am right now.
Editor’s Note: Transcript of interview was edited for length and clarity.
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