I love the insider information. I didn’t know about Voice Care, for example or that nurses don’t get paid for lunch and usually work through it anyway, that you say Happy Birthday to all transplant patients. What is the one other thing you wish people knew about nurses?
A: That our intentions to do good are usually outstripped by how overly busy we are. Because of that we often don’t have time for what we call “the little things” that patients, and we, find so meaningful.
How did the writing of this book develop? Did you take notes? What was the writing process like and how on earth did you have time?
A: The time question is the easiest one to answer. I work part-time clinically so that I have time to write. Also, I love the writing so I’m very motivated to do it. As to how I actually wrote the book, I wrote from memory and I have a good memory, but I keep reading articles about how fallible memories are so I know that the book is reality as I remember it. That said, it’s all based on real clinical experiences. Everything in the book is true, but there may be small details I misremember, or even that I changed to protect patient or staff confidentiality.
I sort of agree with Sheila, in your book, who is disheartened that a doctor tells she has a 20 percent chance of surviving an operation. She prefers not to know. I wonder if there is a way to tell which patients want to know and which don’t? Would or could a hospital ever ask beforehand? I realize that knowledge is power, but isn’t there also a mind-body link? In your experience, do optimistic patients do better than ones who are more negative about their chances?
A: This is a hard question, because for a patient to consent to a treatment or operation they have to give “informed consent,” which means they understand the risks. However, learning that the odds are not in one’s favor can create anxiety and fear, which is fundamentally disempowering. As I portray in my book, if the patient’s nurse can soothe worries about risk that can really help, but nothing can totally take away anxiety about a risky operation. In terms of recovery, though, I haven’t seen that optimism or pessimism makes a difference in how people do, at least not when people are as sick as our patients.
This one day in your book is so completely intense. The responsibility that nurses have is extraordinary. In this twelve-hour shift, it seems that lifetimes are lived. I found myself gripping the pages and feeling tense and anxious. How do you deal with the exhaustion? Is it possible to shut off the hospital when you leave?
A: Just so people know, this is a busy day with the exceptional stress of the two patients who ended up doing much differently than I expected, but this level of busyness was not unusual and I’ve definitely had harder days than this one. How do we deal with the exhaustion? Riding my bike to and from the hospital helped me shut off work after I left. Getting home and seeing the kids is important as is my glass of wine with dinner. The best medicine is sleep and camaraderie; getting enough rest and venting to friends when I need to help keep me on an even keel.
I love the way you talk about the relationship between doctors and nurses, and how it’s changed. It always seemed to me that the nurses, who were always around me, knew more about how I was doing than the doctors, who sometimes whisked in and whisked out. Do you think this will continue to change, and that nurses will have more power?
A: I do think the nurse-doctor dynamic is changing as patients get sicker and care gets more and more specialized because nurses are becoming much more expert. It would help if nurses had more power, but what nurses need even more is consistent respect from physicians. Some MDs just are not willing to listen to what nurses have to say about patients and that’s hard for nurses, but can be really bad for patients.
You talk about how “pain is what the patients say it is.” I realize you have to be suspicious of people wanting to score drugs, but can’t you gauge pain level by the condition? Or is there a vast difference between people’s pain thresholds?
A: You can gauge a patient’s pain level pretty accurately if you listen, look closely and pay attention. I try to always believe the patient’s assessment of her pain and medicate accordingly because the experience of pain is so individual and subjective. The worry about addiction is institutionally very present, though, so I have to keep it in mind even if I don’t feel it’s an issue with any particular patient of mine.
At one point, you talk about how a patient is trying “to turn his pain into a story.” Does making a narrative of illness help a patient feel more controlled? Does that narrative also help nurses to know the care the patient should receive?
A: Illness is scary and as humans we try to make stories of our experiences, especially the difficult ones, because it makes them seem more understandable and yes, more controlled. The patient’s narrative of his illness can be helpful to nurses, but can also be full of red herrings because some portion of the story that is very important to the patient may not matter that much clinically. That is, patients may stress the wrong details because something that stood out for them emotionally may be trivial in terms of their condition or prognosis. The challenge is understanding and acknowledging the patient story while helping the patient understand what we are trying to say to him.
I loved when Ray, healthy and robust, came back to the hospital after having a bone marrow transplant. You said it was proof that people do make it. How do you deal with the knowledge that what you are doing really is life and death? Do you worry about making mistakes? (I’m projecting—I would be worried all the time that I had screwed up!)
A: There’s a lot of worry about screwing up. The trick is knowing we will all make mistakes, but some mistakes are much more serious than others. That means that as much as possible we need to titrate our attention. If I’m checking and hanging chemo I need to be at the top of my game. Helping someone walk to the bathroom takes a different level of attention. What’s hard is that our patients can change on a dime so we always have to be ready to kick our attention into high gear.
I have to ask, is Nurse Jackie (outside of her drug addiction) an accurate portrayal of nurses?
A: Nurse Jackie is a really great portrayal of nursing if you exclude her drug addiction. She’s confident, she’s knowledgeable, she’s a good teacher to younger staff, and she goes all out for patients. I’ve always defended the show and people have told me they started watching it because of my columns about it and were impressed with the representation of nursing on the show.