h1

More than ‘Just’ Fragile Skin and Loose Joints: A Nurse’s Guide to Ehlers-Danlos Syndrome

July 14, 2015

By Sylvia Foley, AJN senior editor

“Most of the local doctors … thought I was making this up.”—patient on online forum

Joint hypermobility is often characteristic of EDS. Photo © 2015 Suzbah / Dreamstime.com.

Joint hypermobility is often characteristic of EDS. Photo © 2015 Suzbah / Dreamstime.com.

You might not have heard of Ehlers–Danlos syndrome (EDS), but chances are you’ve had a patient with this hereditary connective tissue disorder, which affects an estimated one in 5,000 people worldwide. The real number is probably higher. There are six types of EDS with widely varying presentations—and given the lack of consensus regarding diagnostic criteria, underrecognition seems likely.

Primary symptoms can include skin hyperelasticity, joint hypermobility, and general tissue fragility; the effects can be disabling and even life threatening. In one of this month’s CE features, “Nursing Management of Patients with Ehlers–Danlos Syndrome,” author Linda K. Anderson offers nurses a clear guide to this condition. Here’s a short summary: Read the rest of this entry »

h1

The Huddle: A New Mother’s Experience of Discharge Planning

July 10, 2015

By Amy M. Collins, AJN managing editor

John Martinez Pavliga/Flickr Creative Commons

By John Martinez Pavliga/Flickr Creative Commons

Three months ago, I gave birth to my first child under somewhat traumatic circumstances. After a fast and furious labor onset, I was all set to be given an epidural when I was informed the baby’s heart rate had dropped dramatically and I needed to have an emergency C-section. Thankfully, everything turned out okay, and my son was born healthy.

Nurses changed shifts every 12 hours during my four-day hospital stay, and each of them provided excellent care. They spent massive amounts of time with me, helping me to get up and walk around, showing me how to expertly swaddle my baby like a burrito, and even helping me get the hang of feeding my child.

On my last day, two nurses were assigned to get me ready for my discharge. They had tons of printed information for me on postnatal care, wound care, postpartum depression, etc. I was told by one of the nurses that we were going to now have a “mother–child huddle.” She then said to the other nurse, with what I took to be a little irony in her tone, “Are you ready for the mother–child huddle?” Curious, I asked why the emphasis on the word.

“I just think the word ‘huddle’ is silly,” she said, adopting a mock football pose. I thought about this for a moment. Sometimes at work we also use the term instead of “meeting,” and I had to admit that it often gave me football visuals or made me picture my team in a circle with our arms around each other’s shoulders. I told her this—and added that I worked at AJN and thought the topic of word choice in this particular nursing context might be of interest to our readers.

They joked that they’d like to be interviewed and featured in the journal, but then they spoke more seriously about their ambivalence in using this term.

“Huddle doesn’t mean anything in this context,” one nurse said. “What does it actually mean to the patient? We use it because we’re told to by the hospital.” She mentioned patient satisfaction surveys and I wondered to myself if the hospital might provide nurses with various scripts or terminology in order to plant specific words and concepts into patients’ heads for when it came time to fill out these surveys. Read the rest of this entry »

h1

The Challenge of Bearing Witness to Patient and Family Suffering

July 8, 2015

“How do I honor this pain so that it teaches and blesses and does not destroy?”

By Jacob Molyneux, AJN senior editor

Illustration by Neil Brennan. All rights reserved.

Illustration by Neil Brennan. All rights reserved.

This month’s Reflections essay (Why?) is by a pediatric chaplain. As the title indicates, it’s about the questions we all ask in the face of suffering and loss. The precipitating event for the author is the baffled, enraged cry of a father who has lost a child, and her own struggles with the impossibility of giving an acceptable answer—to the child’s parents, or to herself as a daily witness of loss and suffering.

How does a chaplain, or for that matter a nurse, witness the pain of patients and their families time and again and keep from either shutting down or being overwhelmed by the stress and emotion? As we’re often reminded, self-care matters or there’s nothing to give the next time: yoga, gardening, humor, family, cooking, whatever works for a person. Is it enough? Yes, and no, says the author. Here’s an excerpt:  Read the rest of this entry »

h1

An Unending Series of Challenges: APIC Highlights the ‘New Normal’ in Infection Control

July 6, 2015

By Betsy Todd, MPH, RN, CIC, AJN clinical editor

Panelists to the Opening Plenary, Mary Lou Manning, Michael Bell, CDC, Russell Olmsted, Trinity Health, Phillip W. Smith, Nebraska Biocontainment Unit discuss various topics pertaining to infection control.

APIC panelists (APIC president Mary Lou Manning; Michael Bell, CDC; Russell Olmsted, Trinity Health; Phillip W. Smith, Nebraska Biocontainment Unit) discuss various topics pertaining to infection control.

At the 42nd annual conference of the Association for Professionals in Infection Control and Epidemiology (APIC), held in late June in Nashville, experts from around the world shared information and insights aimed at infection preventionists but of interest to nurses in many practice settings.

APIC president Mary Lou Manning, PhD, CRNP, CIC, FAAN, opened the first plenary with the observation that to be presented with an unending series of challenges is the “new normal” in infection control and prevention. Collaboration is more important than ever in health care, she said, and “there is strength in our combined efforts.”

Cathryn Murphy, PhD, RN, CIC, in accepting APIC’s highest infection prevention award, added that trust, friendship, and passion are essential if these efforts are to succeed.

‘I’m not at Ground Zero. I’m in Dallas.’ The highlight of the opening session was a fascinating conversation with key U.S. players in the Ebola crisis. Seema Yasmin, MD, a former CDC Epidemic Intelligence Service officer and now a staff writer at the Dallas Morning News, described how hard it had been to convey accurate information in the midst of rising public hysteria in the U.S.

As an epidemiologist, Yasmin became an interview subject as well as reporter. She recalled that, after months of worrying about colleagues at risk in West Africa, a reporter asked her, “How does it feel to be at Ebola Ground Zero?” Her reply: “I’m not at Ground Zero. I’m in Dallas.”

Later in the conference, Dr. Yasmin reminded the audience that every disaster drill should include a “public information” component and warned that “misinformation spreads much quicker than a virus” in today’s media environment, adding that we “can’t repeat the same [accurate, informative] message often enough.”

Practice drills vs. the real thing. Philip W. Smith, MD, medical director of the Biocontainment Unit at the University of Nebraska Medical Center, described the unit staff’s experiences in treating Ebola. UNMC’s special unit was built more than 10 years ago after the devastating SARS outbreak in Canada that left 33 dead, including several health care workers. Until Ebola cases arrived in the U.S., the unit had been used for training and occasional patient overflow. Dr. Smith emphasized that, even while the unit was not being used, their mantra was “drill, drill, drill” to ensure that staff would function expertly when this specialty care was needed.

Then, in August of 2014, “Suddenly, nine years of drills had to be translated into reality, and there was not much room for error.” He spoke of how inserting a central line while wearing three pairs of gloves, a face shield, and maximal personal protective equipment (PPE) topped by a sterile gown was a very different challenge from repeated practice runs of the same procedure.

Dr. Smith also noted that the transport of patients with Ebola—airlifting from West Africa, ambulance transport, and movement through the hospital to the unit—was “enormously complex and time-consuming.” A special incident command structure was set up just for transport, in addition to the main hospital incident command center.

A horizontal culture was also vital to their work. “There was no hierarchy,” he said. Cultivating a “classless society,” staff developed a strong sense of team under stressful conditions where they were responsible for each other’s safety.

Nonhierarchical work habits stayed with staff after the unit was closed and they returned to their regular assignments. However, when they continued to make “best practice” suggestions to coworkers, they were met with anger and pushback instead of the thanks and cooperation that had been the norm in the Biocontainment Unit. Read the rest of this entry »

h1

Have a Safe and Happy 4th of July Weekend

July 3, 2015

If you’re in the U.S., we hope you enjoy the long 4th of July weekend.

By Bob Jagendorf/via Flickr

By Bob Jagendorf/via Flickr

Wherever you are, and this blog’s readers are sometimes surprisingly far-flung, we will be back with new posts on Monday, the 6th of July.

h1

AJN July Issue: Hepatitis Update, Ehlers-Danlos Syndrome, Nursing’s Blind Spots, More

July 1, 2015

World_Hepatitis_Day_AJN_July_CoverOn the cover of AJN‘s July issue is the 2015 logo for World Hepatitis Day, which takes place on July 28. About 400 million people around the globe live with viral hepatitis, a disease that kills 1.4 million people every year—approximately 4,000 a day. While incidences of hepatitis A and B have declined in the United States in recent years, hepatitis C infection, formerly stable or in decline, has risen at an alarming rate. To learn more about hepatitis in the U.S.—and the role nurses can play in prevention and treatment—read our July CE, “Viral Hepatitis: New U.S. Screening Recommendations, Assessment Tools, and Treatments.”

The article reviews the epidemiology and diagnosis of viral hepatitis, new screening recommendations and innovations in assessment and treatment, and an updated action plan from the Department of Health and Human Services, in which nurses can play an important role in the coordination of care.

Some other articles of note in the June issue:

• CE feature: “Nursing Management of Patients with Ehlers–Danlos Syndrome.” An often debilitating condition, Ehlers–Danlos Syndrome (EDS) refers to a group of hereditary connective tissue disorders that has historically been misunderstood and underdiagnosed due to a lack of familiarity with its signs and symptoms. As awareness and recognition of the syndrome improve, nurses are increasingly likely to care for patients with EDS. This article gives an overview of the syndrome and provides guidance on ways to manage symptoms, recognize and prevent serious complications, and improve patients’ quality of life. Read the rest of this entry »

h1

Surveys Aside, One Crucial Precondition for Real Patient Satisfaction

June 29, 2015

callbellBy Amanda Anderson, a critical care nurse and graduate student in New York City currently doing a graduate placement at AJN

During this hospital stay, after you pressed the call button, how often did you get help as soon as you wanted it?
1. Never
2. Sometimes
3. Usually
4. Always
5. I never pressed the call button

Everyone is talking about patient satisfaction these days. Purposeful rounding, responsiveness, and customer service are discussed in meetings, on blogs, and in conversations at work. An entire science has been created out of satisfaction, with whole journals devoted to patient experience and paid officers tracking scores and strategies. Since hospital reimbursement is linked to how happy patients are, we’ve suddenly gotten serious about satisfaction.

But behind the sterile questions on the HCAHPS survey, real stories about real people reside. I find myself often forgetting the flesh and blood that’s represented by each checked box, and am learning to realize that, while satisfaction is something to be striven for, dissatisfaction is something to be learned from.

In a series of posts, starting with this one, I’ll share stories of my own missteps—ones that may have caused my patients to answer never instead of always to questions about my care. The events described here helped me realize that, score or no score, responding to call bells actually matters at the human level:

Sarah was a difficult patient. Not even five years my senior, she looked five times older than us both. Sarah had a cache of needs that most of my colleagues found infuriating, but she was also deathly ill from a congenital disease, and hooked up to the most complex monitoring devices the ICU had available, making it almost impossible for her to find a position of comfort. The other nurses whispered. They refused to take her as their assigned patient, and rolled their eyes at Sarah’s requests and her steadily ringing call bell.

As a young nursing student, I had a professor tell me that whenever a patient presses a call bell multiple times, they’re doing so for two reasons. If the obvious reason—bathroom assistance, pain medicine, thirst—were the only reason, they’d likely stop calling at some point. However, patients who constantly call may be using the call bell to say something their voice, and their tangible requests, cannot—that they are afraid, don’t trust their care, or feel better with a nurse present.

My professor gave an all-money-back-guaranteed solution: solve every physical need in a timely or upfront way, and then set care intervals: intentionally tell your patient you will return in a set amount of time, and then keep your appointment. Promise again, deliver on the promise, and repeat at increasingly longer intervals, until they no longer call.

As a new nurse, I tried this, and it worked like magic. It always worked, in fact, so it became how I always patterned my care. Patients like Sarah didn’t bother me—I knew her reputation for frequently calling, so I started my first shift with her by being overwhelmingly present. I pulled up a chair and introduced myself. I began by asking her what she wanted from me during our time together, what she expected, and what she needed.

She grew to trust me, not because I always came when she called, but because I made her an active part of her care, and I helped her to see that I was proactive in meeting her needs. Also following my professor’s advice, I set limits with Sarah, but they were soft limits–“I’ll come back in 15 minutes, okay?”

This didn’t mean she stopped calling me; it just meant she called me purposefully, because I also attended to her subliminal need to call.

She didn’t want her hair combed or her bed changed, as much as she wanted to sleep and be pain free. But her care expectations were rigorous, and I answered, and bargained, and advocated, and propped, and pulled up, to make sure that her pain was gone and she felt safe under my watch. So, after a time, when Sarah did call, I ran, because I knew she really needed me. Our agreed-upon schedule kept me in and out of her room so often that the unsolicited sound of her bell rang like an alarm.

Because I was able to push past her “neediness” and see it for what it was, I got assigned to her all the time, and I got to know her as a person. Sarah’s voice sung like a tiny yellow bird, and she was smart. We talked about real life things, joked about her stack of bills—“Last time you looked at those, you got tachycardic; please take it easy tonight”—and began to know and respect each other far beyond the nurse–patient level.

One night, I came in to find Sarah assigned as one of my patients. I said my hellos, asked her what was up, settled her in, sharing her hopes that she’d be able to sleep. My other patient, a change-of-shift admission, needed my minutes more urgently, so I couldn’t spend my usual time chatting at Sarah’s bedside to start my shift.

This new patient had a serious infection, was smothered under a bipap mask, and painfully anxious. She squirmed as I worked, swatting at the mask, confused about my instruction to relax and be still. My patience was slight with her—I had too much to do trying to save her life and little time for the tenderness I bestowed on sick-but-stable Sarah.

As I struggled with her confusion, which affected my ability to administer her ordered care, I ran through my new patient’s orders. Penicillin stuck out. I knew that an order for antibiotics was crucial, but I thought penicillin a rare choice to make in the land of high-powered antibiotics like vancomycin and Zosyn that I so frequently gave in the medical ICU. I checked her allergies and penicillin wasn’t one of them.

But this “hmm” moment shot up a tiny red flag in my mind—first dose, watch for reaction. I made a plan to stay in the room while the bag infused, even though it wasn’t required and I had plenty of other things I needed to run for.

My new patient was already confused, but her mood changed almost as soon as the penicillin hit her bloodstream. She flushed and scratched at her chest, and from under her bipap mask, I heard her moan. I knew what this was, and was glad for the extra caution I’d taken. I stopped the penicillin, broke the seal of the mask on her face, and she answered the question I was about to ask: “I’m itching! I’m itching!”

With saline flushing in its place, I pitched the penicillin. Benadryl, steroids, cool air, a break from the bipap, an assessment from the resident, and my new patient immediately improved. With oxygen running in a high-flow mask, she held my hand and we breathed together. I could still see the redness in the soft tissues of her neck, but its spread soon slowed. The worst was over, but there was no way I’d leave her side until I was sure that the reaction had fully subsided.
Read the rest of this entry »

Follow

Get every new post delivered to your Inbox.

Join 1,767 other followers

%d bloggers like this: