Why Read This Book

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You might be asking why nurses should read this book. After all, I’m not a nurse. In fact, I’ve not taken an actual nursing course, although in graduate school I took numerous courses with nurses.

That’s because my formal medical training isn’t in nursing. It consists of mountaineering first aid courses, Emergency Medical Technician (EMT) training at a community college, and graduate work in medical ethics in the University of Washington’s medical school. I like to call the last, “studying law in the medical school.” The latter was good enough I won a lengthy dispute in Seattle federal court.

Of course, that’s not the full story. I parlayed that EMT training into a nursing assistant position (then called a pediatric aide) at one of the country’s top-ten children’s hospitals. There I worked nights alongside a nurse in the hospital’s specialized Hem-Onc unit. My patients ranged from three months until their tenth birthday. Most had leukemia, so I know what it’s like to work as a nurse under stress.

I worked Hem-Onc for sixteen months, seeing three sets of nurses move on to less grueling shifts, before I too moved on. I then worked for another ten months on hospital’s adolescent unit, caring for patients from ten and up with every imaginable illnesses, including leukemia. That’s a total of twenty-six months on the nursing staff of one of the nation’s premier children’s hospitals. Counting the times I floated, my patients had almost every imaginable illness, and their ages ranged from babies just released from the NICU to those in their early twenties with cystic fibrosis or needing heart surgery.

So, while I’ve not worked as a nurse, I have spent over 4,000 hours working alongside nurses. You might consider me a well-positioned observer of nursing—close enough to understand but distant enough to bring different point of view. That’s what this book offers—a look at how nursing might benefit from a new type of nurse. I also suspect it’ll delight many younger nurses and appeal to older nurses who’ve been asking themselves “What should I do next?” You’ll also soon pick up on the sorts of nurses that won’t be happy with these ideas.

While I have adapted an oft-used term for that new nursing position—nurse mentor—keep in mind I’m referring to someone with far more powers and responsibilities. That’s why I refer to her as a senior nurse mentor. It’s a position that can be achieved only after years of nursing experience.

Now back to what I did on nursing staff. Keep in mind that on night shift the nurse/assistant line blurred dramatically. When the nurse went on break, Hem-Onc was all mine. Even more significant, a lengthy staffing crisis I’ll describe later meant that for almost a month I bore the ultimate responsibility for caring for Hem-Onc’s seven very sick children. Like it or not—and I didn’t—I became a critical-care nurse with only that paltry EMT training. Yes, that was scary. Preventing situations like that is precisely why I’m writing this book. No one should be placed in a position that far removed from their training and skills.

Although I wasn’t that aware of its importance at the time, I was also a first-hand witness to two dramatic transformations in the care of children with cancer. Bone marrow transplants (BMT) had taken place as far back as the 1950s, but they were rare, experimental, and held no chance of success. At that time, childhood leukemia was a death sentence, so almost any treatment, however doubtful, could be justified.

By the early 1980s, that had changed. In cooperation with a world-class cancer treatment center nearby, our unit did some of the first BMTs on children that were genuine treatments rather than futile experiments. The procedure was so new, when I told a friend who worked in radiation therapy that my latest patent, a fourteen-year-old boy, had received 600 REMs of whole-body radiation, she turned to me with a shocked expression and said, “That’s a lethal dose.” So it was, I replied. I then explained why a bone marrow transplant began with a radiation dose that would kill within a few weeks if the transplant did not take. A few years later, I wouldn’t need to explain. She’d know. Bone marrow transplants were that new.

I also a witnessed another transformation with a far broader impact. Our children needed IVs for their chemotherapy, antibiotics, and other treatments. Every two or three days, the needle would slip out of their soft little veins and infiltrate into tissue. The child would complain to a parent about pain. The call light would go on, and either the nurse or I would discover the bad news. 

Soon afterward that child would be screaming as yet another IV had to be started. I’d hold, while the nurse did the poke. We hated it. Given everything else that the child was going through, it was a rotten, terrible, miserable, vile procedure. Still worse, after several weeks of hospitalization, we often ran out of places to poke. What we was did good medicine, but it felt more like torture.

Often there was a discussion about whether starting another IV made sense. If a child was getting medications, it was. But what if he or she wasn’t? Our kids had endured so much, did we have to start another IV just in case? While the decision was technically the responsibility of the resident on duty, nursing experience usually trumped rank. In the middle of the night, the nurse and I usually decided, and the resident followed. It wasn’t a pleasant decision.

Thankfully, I soon saw that horror fade. Central lines changed everything on Hem-Onc. As with those bone marrow transplants, we were the pioneers. One of our physicians had invented a still-popular central line about two years earlier. It used a soft Silastic (rubbery) tube inserted into the upper-right chest and placed into a major vein just before it returned to the heart. When our nurses complained that the line didn’t spare a child the misery of daily pokes for blood samples, he modified it so it could be used to draw blood as well as give fluids. For us—and especially for those children—that was utterly wonderful.

When I started, central lines were the exception. Within a few months they’d become the rule. After diagnosis and workup, treatment would begin with the insertion of a central line. Properly cared for, that line could stay in place for months, sparing a child numerous pokes. Caring for that line and doing the daily blood draw about 5 a.m. became part of the regular routine for night shift.

Unfortunately, the leading edge of technology is also the bleeding edge. It’s when the worst mistakes are made. For our Hem-Onc specialists, the learning curve centered on those early bone marrow transplants. Two of the boys I cared for who received a BMT died. One died of an infection that fell into a narrow gap between two broad-spectrum antibiotics. The other died of graft-versus-host disease (GVH) despite the fact that the donation came from his twin brother. 

GVH strikes when the donated blood regards the recipient’s body as if it were an infection. Without realizing it, I saw that boy’s first symptoms. When I took his temperature a few days after the transplant, he complained that merely putting the probe under his arm hurt. My first reaction was that he was just being a brat. His behavior made no sense. What I was doing should not hurt. Then I caught myself. “Never blame patients. Take them seriously,” was one of my rules. Unfortunately, I failed to report that problem. Only when his GVH was diagnosed a day later did I remember that a hypersensitive skin is one symptom of GVH. That became part of my own BMT learning curve.

This book stresses the lessons that flow from that other learning curve, the one connected with those then-new central lines and the risks associated with them. That experience and the accompanying failures—which quickly spread with the central lines from Hem-Onc to the entire hospital—may have also contributed to a final climatic experience which I’ll discuss, a clash between the hospital administration and its nurses so intense, some twenty percent of the hospital’s nurses quit and replacing them became almost impossible.

All those experiences provide the foundation for suggesting a new nursing position, a senior nurse mentor who is independent of most administrative controls and tasked with playing a critical role in nurse training and patient care. She and the possibilities she offers are why you should read this book. My experiences merely provide the backdrop. She’s the one you should be thinking about.

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