Bringing It Home: When the Science of Caring Becomes More Than Words
Rob Slaughter – director of the Office of Research and Information Technology at UCSF School of Nursing since 1993 – thought he understood what nursing science contributes to patients’ health and well-being. Then he was diagnosed with a life-threatening melanoma, and abstract concepts assumed flesh-and-blood meaning.
When the phone rang on the morning of July 12, 2004, my physician said three words: “You have melanoma.” I don’t recall much of the conversation, but I knew that the journey ahead would be complicated, emotional and uncertain.
What I didn’t know was how naïve – even ignorant – I was. Despite having worked with Marylin Dodd and Christine Miaskowski, two of the world’s most prominent experts on the side effects and symptom management of cancer, I didn’t know very much at all about the disease. As I learned more than I ever wanted to know, these wonderful women would become dear friends and staunch allies in my fight.
They were there, for example, to advocate, translate and support when my wife and I went to the UCSF Melanoma Surgery Clinic. Though I didn’t realize it then, their presence would be my first lesson in what nursing science means in real-life care.
As a statistician, I heard the survival statistics, but Chris and Marylin translated the physician’s words into terms that had real meaning. I kept hearing the oncologist say, “Unfortunately, there is no cure for melanoma.” That sounded like a death sentence. But Marylin explained that I needed to begin thinking of myself as a person living with cancer. Most cancers these days, she said, are more like chronic illnesses. If they can’t be cured, they can generally be managed. That helped me evaluate my treatment options.
When I was rolled into surgery the following week at 6 a.m., Marylin and Chris were at my side.
Unfortunately, this surgery failed to stop the cancer. A recurrence in 2009 resulted in a recommendation to undergo biochemotherapy, a treatment strategy that combines traditional chemotherapy with immunotherapy.
When I arrived at California Pacific Medical Center (CPMC) for pretreatment counseling, Jody Hauser, a nurse practitioner who graduated from UCSF, went over the 10-page list of side effects and contraindications. She helped me understand that while the treatment was going to be rough, not all patients experience all the side effects, and the intensity varies. She didn’t sugarcoat things, but also was kind, informative and endlessly patient.
For the next 18 months, I spent time in five-day intervals in CPMC’s Transitional Intensive Care Unit. About three months into my treatment, the biochemotherapy began to shut down my kidneys. If things didn’t improve, the treatment might have had to be suspended or stopped. Another UCSF School of Nursing graduate, nurse practitioner Christine Kim, who was eight months pregnant at the time, sat with me (as she would often) and walked me through an exercise where I was to focus on times in my life that were fun and meaningful and healthy.
In my early years at UCSF, I had worked with some of our faculty, students and postgraduate researchers, including Sr. Callista Roy, on guided imagery and visualization. We found some efficacy, but, frankly, I didn’t believe in it. Though I should have known better because of the significant role that nursing research played in developing and operationalizing these techniques, I still wondered how an approach that is easy, noninvasive and doesn’t cost anything except time could possibly work. (And isn’t that the description of many nursing interventions?)
Yet as my vital signs and lab results started improving and I could feel myself getting better, I became a believer. As a result of my improvement, my treatment could continue, and I was able to get through all 18 months with very good results. There were many occasions during the low times in my treatment that I used imagery on my own.
There were many other instances where the role of nursing science suddenly became real. For example, as I sat in many different hospital beds, I noticed the common patient complaint about how “airless” hospitals are – the way the smells linger in your nose and mind. I thought about how I was constantly surrounded by chemicals, many of which were quite volatile: the cleaning products used by the janitorial staff, the alcohol, the latex gloves, the pungent ChloraPrep, the plastic packaging of the Huber needles, the Tagaderm, the IV lines.
But I also observed the consistently careful protocols the nurses used to access my implanted port and infuse the toxic chemo drugs, and the degree to which they protected me – and themselves – from the hospital’s hazards. I remembered the conversations I’d had with my ex-student and friend, Christina Foushee, about the exposure that nurses and patients have to dangerous chemicals and about the important work that’s being done by nurses in occupational health.
As I recovered, I began to fully grasp for the first time what a broad and holistic profession nursing is. I had always heard and believed that when put into the hands and minds of expert clinicians, nursing research manifests itself in many important ways. But I didn’t have a clue how important it would be for me as a patient whose life was in the hands of some extraordinarily skilled and educated nurses.
As they brought their skill, knowledge, care, understanding and humor to my bedside, it was invigorating to see nursing science deeply integrated into clinical practice. I get it now, and I’m more thrilled than ever to be a small part of it.
Sharon A. Lamb Endowed Chair in Nursing and associate dean at UCSF School of Nursing
I was with Rob when he went to see the docs here. I went as a nurse, not as a scientist. I remember him talking afterwards. He’s a statistician and he knows the numbers, and I was saying, “You’re not a number.” Marylin Dodd and I allowed him to talk through the options and helped him with a list of questions. Nurses do that really well.
What makes an expert? Nurses often have a conversation about that. To me, it’s walking into the room and figuring it out – the whole gestalt. You can walk into a room and know something bad is going to happen. That’s an expert, and it’s why you need a therapeutic nurse and not a robot.
A woman in our pain study arrived in incredible pain. The nurse asked, “Why didn’t you bring your short-acting medicine?” The woman said it was because “I might get stopped by the police and have medicines in my purse, and they might arrest me.” That’s the kind of symptom management we need to do. This nurse had a therapeutic relationship with the woman, who trusted her enough to reveal her true concern.
Sometimes it’s just the words you say to explain what a person is experiencing. We’re verifying the patient’s reality. Some of it is chemistry, human behavior. Some of it is education – you can teach people therapeutic communication, open-ended questions, that type of thing – but you can’t get away from experience, either. The gestalt is putting it all together and having a passion for doing it right.
Graduate of UCSF Geriatric Nurse Practitioner program (2005) who works closely with physician David Minor and his melanoma patients at California Pacific Medical Center
I usually see the patients first. I take a history, do a physical, write up notes. I make rounds with Dr. Minor. I take questions from nurses.
Rob was on probably the most intense chemo out there, one of very few that requires hospitalization for five days. The interleukin-2 causes multiple side effects that require frequent monitoring. He never complained. When people found out he was a professor, they wanted to call him Dr. Slaughter, and he would have nothing to do with that. Everybody who met him loved him. He was one of those patients – he exuded this kindness.
I have a little more time with patients than the interns and residents who used to do what I do. Because these patients are always on the same unit, I see them every month, and I develop a relationship with each one, which helps them tell me things. The therapy is so intense, so horrible, that this kind of relationship you develop with patients gives them a little incentive to come.
I do the medication ordering except the chemotherapy drugs. Dr. Minor and I will talk about what a patient is experiencing, what’s causing side effects. And as a nurse practitioner, I tend to do a lot more literature searches than I did as a bedside nurse. I try to find what is going on at that moment, maybe try to find what researchers have found is most efficient in terms of controlling something like nausea.
Day-shift charge nurse, Transitional ICU #3, California Pacific Medical Center
My role is to look at the flow of the unit and transfer people appropriately. We have a number of patients who need to come in, but it can be difficult to get a bed, so we’ve learned to give patients like Rob our phone number. Waiting outside for an hour versus waiting in the hospital is different.
We need to be proactive because if a patient doesn’t get in by a certain time, treatment might be delayed, so we do a lot of legwork that people don’t see. In the morning, my nurses and I have a little huddle to get a holistic and comprehensive picture about what’s best for patients.
Everything is evidence-based research now. Nurses are very professional and very smart. If you don’t tell them the reason behind a certain thing, they won’t do it. Research has shown that if patients are rounded every hour, you minimize call lights, control pain better, reduce pressure ulcers. Our hospital decided to initiate that, but at first everyone had a hard time adjusting their practice because they didn’t understand the rationale. No one really explained what it was. The PACE (Partners Advancing Clinical Excellence) Nursing Council realized the problem, showed the nurses the research, and now we’re doing a great job.
I did my master’s thesis on nursing boundaries. It’s a balance. You’re a professional, but you also have to be passionate to be a nurse. Sometimes patients become friends. But you have to remember that while friendship is important, your priority always has to be their medical needs.
One of our patients was complaining about the bed, the noise. We decided when that patient was gone, on a down day, to put a nurse in the room to see what they feel. The nurse picked up the noise from the bed, the stain in the corner of the curtain – interesting when you put yourself into the patient’s shoes.
Evening charge nurse, Transitional ICU #3, California Pacific Medical Center
I’ve had 11 years in the T-ICU. The biochemo – it’s a scary experience. We do a lot of explaining, reinforcing, reminding them of what to expect. That alleviates a lot of their anxiety about what can happen to them when they’re on this treatment. It all depends on the individual. With Rob, he was always positive – just a great attitude about the whole treatment – went along with vitals every two hours, waking up. He did really well.
It’s challenging for us in terms of trying to treat their side effects. It’s really about whatever symptoms are showing at the moment. With rigors (shaking), we might medicate, give warm blankets, turn up the heat.
You have to be really patient with patients going through this treatment because of what they’re experiencing with the side effects. Here we are pushing medications, but it can take a while because of the nausea. Some can’t even swallow pills. I’ve offered ice cream, applesauce. You have to experiment. If they’re willing, that’s great. Some aren’t. You just have to go back in and have them try again. There are a lot of psychological issues; they have so many fears of trying to take the pill and throwing it up. We have to read those cues and address them.
It’s hard to deal with the emotions sometimes. Sometimes it takes a lot out of us, knowing a person’s not doing well. We get really attached to our patients. I try not to take it home. I’m lucky; my husband is a nurse also and understands where I’m coming from.
Charge nurse, Transitional ICU #3, California Pacific Medical Center
I’ve been a nurse for 30 years and on transitional ICU for six. We deal, among other things, with the special therapy Rob got for melanoma.
IL-2 is a monster. You can get hypotension, tachycardia, swollen, tired, weak. Your temp can go up. You get chills and sometimes violent rigors where the whole bed will shake. There’s also irritability – although Rob never seemed irritable – and nausea and vomiting, of course.
Our job is to help with side effects. A lot of it is medication and standard actions like fluid boluses and adjusting dopamine and Q2-hour vitals. And part of what we do is anticipate, maybe ask, ‘Does Demerol work for you, and does it cause you nausea afterwards?’ Or little things, like at 9:00, they have a lot of pills to take. Sometimes I’ll give the vitamin a little later, when they’re eating, just to disguise the taste of it. Little things like that to try to dispel the nausea.
I try to empathize and imagine myself lying in bed with a large, flu-like syndrome, feeling weak and tired and nauseated all the time.
Rob is a very easy guy to talk to, and I’d try to talk with him whenever I could about whatever, like large-screen TVs, Disneyland, his new car – things that take his mind off where he is. Sometimes we’d go for walks in the hall. Diversion, that’s the word.
When I was first in oncology a long time ago, I kind of took to it, and I’ve never found it depressing. There are particularly stressful days, but I do what I can do those days and move on. My wife is a nurse and we can commiserate, so that’s a big help. Also, I play drums, and while my kids were growing up, I’d be so involved with them that I could forget work.