Essential Nursing: Lessons from the Infusion Room

Kenagy, David R.

Journal of Christian Nursing:
doi: 10.1097/CNJ.0000000000000131
Feature: practice
Abstract

Abstract: A patient's long-term experience receiving infusions on an outpatient basis for a serious illness leads him to understand and share insights about the essence of excellent, compassionate nursing care.

In Brief

“And what now, this nursing thing?” A long-term patient shares what makes for the best nursing practice, especially when nothing else can be done.

Author Information

David R. Kenagy is a Dean Emeritus of the Willamette University College of Law in Salem, Oregon, and an ordained Elder of the Evangelical Church of North America. Treatment for a chronic nerve disease puts him in the regular care of nursing professionals.

This article was previously published in the December, 2013 Portland Magazine under the title, “Honesty Spoken Here.”

The author declares no conflict of interest.

Accepted by peer review 1/3/2014.

Article Outline
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GET LAURA

It's a busy place, the nurse treatment room where I get my more-or-less weekly intravenous (IV) infusions. To keep things moving, a simple protocol follows the third unsuccessful attempt to start my IV: “Get Laura.”

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The year is 2003, not long after my nerve disease announced that keeping upright and functional required regular attendance to the infusion room. Enter Laura: a crisp white shirt with name tag, tidy IV travel kit, and big smile. Next, a confident arm positioning, disinfection, poke, click, tape down, and done. Another flawless IV start. Exit Laura.

“Who is she?” I asked my relieved and grateful attending nurse.

“Oh, she's our go-to IV starter. She works the hard ones.” The tone of gratitude disclosed not a drip of professional envy. No sense of competition or positioning, merely happy for the help.

“What does Laura do when she's not starting hard IVs?”

“Laura mostly treats our cancer patients. She follows them in our clinic's oncology department. She keeps ports open, schedules care, coordinates with the treating oncologists and gives IV hydration. Oh, and she sort of tends to all the other things that come up during chemo. She's terrific.”

I didn't need the “terrific.” Experience had confirmed it. But the “sort of tends to all the other things” gave notice. There's more to Laura.

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WE NEED TO MOVE YOU

Four years later my infusions began taking longer than the nurse treatment room could manage. Next stop: The Infusion Room: Nurse Laura's domain.

I've been an Infusion Room regular for over seven years. It's like a local coffee shop, only with needles, tubes, and dangling fluid bags. People who need medications pumped into their bloodstreams gather here, but not as hungry diners. Some have nerve diseases, others arthritis, and some cancer. Everyone knows that chemo has side effects. Some newer medications manage that better now than way back when. Still, folks in this room understand affliction.

We have three infusion stations in this windowless grotto. Stations One and Two are cushy, with light blue recliners, for infusions lasting only an hour or two. Station Three is a bed against the back wall. It is for the longer-term visitor. That's where I go. Hospital-style sliding curtains create the illusion of separation. We all hear everything.

An infusion pump the size of an average pumpkin looms over each station, clamped to a shiny metal roller-pole. Fluid bags and plastic tubes decorate four hangers branching out the top. In about six hours, the suspended liquids end up inside me.

I sleep most of the day, drifting in and out of a fuzzy stupor. Around me, Nurse Laura tends to her patients' needs. We hold in common the space, the time, and the hope of another day.

At the season of life when some careers are peaking, the infusion room became my office. Between headaches, sleep, and malaise, I do nothing the modern economy values. My career in law and legal education: kaput, replaced with days of sleepy-time, treatment, and side effects. Life's blimp is drifting sideways. Now what?

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BACK TO SCHOOL: HYDRATION 101

Ill people don't fuss with wimpy words. Truth trumps trivia. When folks come to the infusion room after days of vomiting and diarrhea they don't say “vomit.” They say “puke.” They don't bother with “diarrhea” either. They use other words. Honesty is spoken here.

Our uncensored candor stares into Laura's bejeweled half-glasses. Truth stares right back. No excuses, no diversions. Everything's business, but wrapped in the wisdom of experience.

Patients looking up from the infusion chair are needy and know it. And what is their reward? The pointy end of an IV needle aimed at a vessel tracing across the back of their hand. Vulnerability births teach ability.

“So, you've been hurting since night before last.” Nurse Laura's statement, half intoned as a question, lingers unanswered for a moment. Soft music, from jazz to classical, plays on the aging, but serviceable CD player. It calms and fills the awkward pauses.

“Yes,” comes the muted reply.

“Well, if we add some fluids back into your body, it should make you feel better. What do you think?” Even a remote chance to feel better, get the antinausea drugs on board, and again address the toilet bottom, easily outweighs the needle's greedy stab. Patients promptly and routinely consent to IV hydration.

Inserting the IV needle begins with gentle warming, cleaning, searching for veins, and reassuring words. Like a crossing guard, these words lead safely to school. “It's really hard to drink anything when it keeps coming back up, isn't it?”

“You bet, sister,” burps the emphatic reply.

“Well, what can we do about that?” asks Laura, now turned teacher.

“Nothing,” the patient responds. “The idea of drinking anything makes me sick.”

Class begins. “Which tastes better to you, juice or water?”

“Neither one,” replies a weary voice.

“Well, do you think you could hold down just one sip of either one?”

A resigned “Maybe” moves class along.

“If you could hold down a little bit, you wouldn't have to come in here for hydration.” It's the infusion room's blue light special: A chance to feel better without the needle.

“Oh, sure, I could take a sip, but nothing more.”

As if telling a friend where to find the best donuts in town, Nurse Laura moves in close. “If you just find a pitcher of water or juice, whichever you like best, and a very small cup, you can keep that cup full and near you all day. Then, every time you think of it, take a tiny sip from the little cup and refill it. Just keep sipping from that cup. It works.”

And it does.

And He took a cup and gave thanks, and gave it to them, saying, ‘Drink from it.’

Jesus never said how often.

Neither did nurse Laura.

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BOWEL CARE 201

Behind my curtain I heard all kinds of things. Just last year, however, we moved to the new infusion room. It keeps private things private. Class continues, of course, but now one student at a time. Still, from the old room, the tiny one with just four walls, a single door in and out, tile floor, and bathroom down the hall, I remember auditing three upper-division courses.

Pain management involves more than ingesting controlled substances. Vicodin and its drowsy cousins slow everything down. Everything.

“As you start these meds, you'll need to take care that your bowels don't slow down too much.”

“What?” comes the bewildered gasp of a patient with colon cancer. “I'm already backed up to Oshkosh; how can it get any worse?”

“Your surgery slowed down your bowel movements for a while. These pain meds can do the same thing. At this stage in your healing, it's really important to stay regular.”

“Sweet. So what am I supposed to do now?” Sarcasm discloses concealed fear.

With the patient's question and fear both in play, class begins. Nurse Laura explains the medical miracle of stool softeners. “Take half each morning, increase to a whole one, if needed. You can adjust up or down to keep yourself regular. Here, I'll go with you to the pharmacy so you buy the right one.”

“Okay, now I get it. If I take this like you say I'll be able to poop, and it won't kill me?”

“That's the idea, but it takes paying close attention. Can you do that?” Silence is usually what I hear next. Picture the bill on the patient's baseball cap nudging up and down with a faint smile of relief tucked underneath.

Next thing I hear, “Thank you, Laura. I'm ready to go home now.”

“Okay, I'll call your ride.”

Nursing care means caring enough to talk toilet. It means, Love your neighbor as yourself. It knows,

Perfect love casts out fear.

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HAIR CARE 301

The oncologist warns, “Your hair will probably fall out with this drug.” A couple of months later, you'll show up hairless and you're told, “Well, I see the drug is working.” That's about it. Not to demean the doctor's place in all this—just to say there's so much more to having your hair fall out than having your hair fall out. It's why Laura teaches Hair Care 301, another upper-division course.

Who talks to you through those months when you look like a molting bird, and worse, feel like one? No feathers, grounded, vulnerable, not yourself. And who's going to tell you the grungy details like, “When it first starts falling out you'll notice more hair in your brush.”? Or, “It won't come out all at once, but there'll be clumps in your fingers when you run your hands over your head.” Who covers all that? Who can you trust? Depends on your nurse.

If we measured tears like rain, we'd double the season's average when hair loss begins. But that's when Laura teaches best. “Oh, I'll tell you. Girlfriend, that's one gorgeous hat. Did you get it at the goofy shop we talked about on the phone?” Or, “Have you tried those big, patterned scarves? They're so ‘out there!'’ Or, “The best wig shop is by the old movie theater. Here, I'll draw you a map.”

But the Helper . . . He will teach you all things.

Nursing that helps always teaches.

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PARENTING 401

Serious. That's the word when scarcely detectable sobbing drifts out of Station One. Bad enough when a wife of 50 years stands near, unable to help her husband breathe. “Just lift up his arms a little and I'll get my hands under his chin. That should help.”

But when a mother stands over her inconsolable child, well, that's serious. The youngster's sob isn't anything you'd recognize. The suffering will seek life, but truth disagrees. Everything hurts too much to let out a good cry's flood. The sound I hear is what seeps out instead.

It's usually safe behind my curtain in Station Three. But the sound of another so weakened by disease that even sobbing is hard? That invades the heart. No matter my defenses, it gets through. The flimsy curtain's charade is over. We all know what's happening. I'm useless, empty. Inside myself, just this: “Lord, have mercy. Immediately.”

And what now, this nursing thing? Silence. Presence. A cool washcloth. Repositioning. Standing. Watching. Repeat. That's it. Gone are the happy plans for another special trip, if just “her strength will hold out.” Absent too: parents' plans for seeing another cutting-edge doctor in Atlanta, or St. Louis, or Mexico. All gone.

This is where patient education includes parent education. And it doesn't look like you'd imagine. Loving parents enter the unknown, but not alone. They watch and learn. Nursing, caring, is all by wordless movement. An odd dance to the cadence of muffled sighs.

Some call this the ministry of presence. That gets pretty close. There are no instructions left to give the child or mom or dad. No more calls. No pharmacy runs. The nursing plan is being there. It tells the parents, and most of all, the dying, that Nurse Laura knows you are there and knows you are hurting. You are important. Loved. Cared for. And she knows what's happening. She has earned the right to hold your hand. To be with you. That counts.

I am with you always, even to the end of the age.

That counts, too.

Class dismissed.

Keywords:

caring; chemotherapy; intravenous infusion; ministry; nursing; patient teaching; presence; spiritual care

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