Archive for the ‘patient perspective’ Category

h1

The Cruel Irony of Alzheimer’s Disease

February 6, 2012

Photo by 50 Watts, via Flickr.

By Amy M. Collins, associate editor

As I watch my grandmother navigate the murky waters of her Alzheimer’s disease, it continues to surprise me that parts of her brain work at warp speed, while other parts seem to be completely defunct. For example, although she can’t remember what she’s done from one minute to the next, she can make up a lie to compensate for the memory loss in less than 30 seconds.

“Where did you get that new necklace, Grandma?” I recently asked at a family party. “Oh I bought it at the place where I work, you know, I type at a school,” she said, with certainty. Or when asked where she got a new sweater, she told my mother she went to the store. “How did you get there?” my mother asked. “I drove,” she said. “But you don’t have a car.” “Oh, well then I must have walked.”

She no longer remembers my name unless prodded, but she does remember that she has a cat in her room at the independent living center, and worries about it constantly. “I have to get back to take care of my cat,” she says when she visits us, becoming increasingly stressed the longer she’s away. Yet it’s hard for her to remember to care for herself, and she often forgets to shower or eat.

She still has a sense of humor, making fun of the “old” people at her facility and bragging about how great her own paintings are. She once complained about a photo of her that hangs in her independent living center’s entrance, together with photos of all the other residents. “Maybe it’s just the lighting, because nobody’s photo looks good,” my aunt said. “Yes, but the other residents really look like that,” my grandmother quipped.

But sometimes even her ability to laugh at things is heartbreaking. She recently called because she was worried about my grandfather—she couldn’t find him in the home. “Dad’s been dead for eight years,” my mother told her, worried at what my grandmother’s reaction might be in revisiting this particular pain. “Oh, well, then that explains it,” she said. “I was wondering how we both fit in a single bed!”

Another unexpected acuity is her ability to outwit her nurses. When it’s time for them to dispense her pills, she sometimes convinces them she’s already taken them. She’s also managed to sidestep nurses’ intervention in her diet. After my grandmother had gained weight over the past few months, the nurse we hired to keep an eye on her told the waiter at her facility not to give her any more ice cream after dinner or bacon for breakfast. While “in her right mind,” she would never have eaten these foods, even once denying my dying grandfather eggs because of “high cholesterol.” But the day after the nurse intervened with the waiter, we found out my grandmother had switched tables, got a new waiter, and got the bacon. Read the rest of this entry ?

h1

Tilting the Earth

January 30, 2012

Elizabeth R. Plumer, PhD, JD, is a biochemist and intellectual property attorney. She lives in Saco, ME.

When an MRI revealed that my four-year-old daughter’s brain cancer had returned, I took the only action possible: I bought a dog. I scoured the Sunday papers and found just the puppy I was looking for, a Rottweiler. No deep psychological analysis was necessary to decipher my choice. I wanted a dog to protect my daughter from external threats, even if it could not protect her from the one threat that mattered most.

We named our puppy, Maggie, after Rod Stewart’s Maggie May, because from the moment she entered our lives, she stole our hearts. Maggie whimpered through that first night until I fell asleep on the couch with her gently snoring on my chest.

It was like having a newborn in the house again, and just as I had filled photo albums of my daughters, I took pictures of Maggie and my girls together. In one, taken the first summer we had her, Maggie lies in the shade beneath the swing set as if on sentry duty for my four-year-old and her seven-year-old sister. My girls hold steady on their swings and smile into the camera. The younger one wears one of my husband’s T-shirts over her bathing suit and sports a pixie haircut, the short hair a legacy of her recent surgery and radiation treatments. In my mind, the still photograph morphs into action as my daughters jump off their swings and pounce on Maggie, who luxuriates in the attention and rolls over to request a belly rub.

My younger daughter was 18 months old when she was first diagnosed with brain cancer. Her tumor was an astrocytoma, named for the star-shaped cells from which it had originated. Her tumor was benign, a meaningless term since benign brain tumors can be just as deadly as malignant ones, if left untreated. The location of my daughter’s tumor made it impossible to completely excise without risking paralysis. Radiation treatments were not recommended for children under six because of their harmful effects on a child’s developing brain. The surgeon removed as much of the tumor as possible. The rest was left behind until a second operation became inevitable.

When my daughter turned four, an MRI showed that the tumor had increased in size, she underwent a second operation to reduce the mass as much as possible. This was followed by daily radiation therapy for eight weeks. The doctors gave my daughter a one in three chance of surviving five years. Read the rest of this entry ?

h1

Magnet Hospitals: It’s About the Process, Not the Designation

January 23, 2012

By Shawn Kennedy, AJN editor-in-chief

When I had a recent medical emergency, I went to the local community hospital near my home in northern New Jersey. I had been there before for outpatient testing or to the ER with a child and found the care attentive and efficient and the staff friendly and professional. Besides, it was a Magnet-designated hospital, so I was confident that I’d receive good care.

The ancillary staff was wonderful, but I found myself disappointed with the nurses on the acute med/surg unit where I was located. There was no rounding that I was aware of, and they seemed to only show up when it was time to administer meds. Only a few nurses introduced themselves, and only two nurses over three days really engaged me in any conversation. Nurses seemed to respond to call lights only for those patients to whom they were assigned. The unit clerk who promptly answered the call light intercom would say, “I’ll let your nurse know and she’ll be in soon”—when I asked for pain medication, she told me “your nurse is giving report; I’ll let her know when she’s finished.” I waited uncomfortably for more than half an hour.

There were whiteboards, but often the information—especially regarding the date and the name of the nurse—was unchanged from day to day and no longer accurate. (This was annoying, in that they kept asking me what date it was and I kept getting it wrong!)

The worst, though, was the noise level at night. I’ve worked nights, and I know it’s easy to forget to keep conversations hushed. But this unit was a good example of those that are as “noisy as chainsaws” (see our recent post on this). I was two doors down from the nurses’ station and I could hear every conversation, people singing holiday carols, detailed discussions of patients (forget HIPAA!). Requests that they reduce the noise made no difference. One night, I learned every detail about one nurse’s vacation plans while she and a colleague spoke in normal, conversational tones, occasionally laughing, while providing care to the elderly woman in the bed next to me at 2:30 am.

When I asked if they could speak a bit more quietly, one of the nurses angrily pulled back the curtain and told me that I had to understand that they needed to take care of the woman and would be done shortly. She then resumed talking about her vacation. I barely slept at all the three days I was there. It was exhausting, and I was happy to get home.

A few days later, I was admitted to a large teaching medical center in Manhattan, where I stayed for 10 days. The contrast was startling. The ICU nurses were incredibly attentive and supportive; they made me and my family feel that I was safe and in excellent hands. On the med/surg unit, the nurse manager introduced herself when I arrived. My assigned nurse for each shift would introduce herself and ask me if I needed anything; she came by frequently, even if only to poke her head in the room and say, “Everything OK?” Nursing assistants likewise introduced themselves and would inquire if I needed anything. Read the rest of this entry ?

h1

Poll: What Can We Actually Do About Hospital Room Noise?

January 17, 2012
By ArtsieApsie, via Flickr

Fierce Healthcare reports this week on the latest findings about hospital room noise: ”hospital rooms can be as noisy as chainsaws, according to a new study [subscription required] published this week in the Archives of Internal Medicine….The average noise level in patient rooms was close to 50 decibels….The noise disruptions mostly come from staff conversation, roommates, alarms, intercoms and pagers….Loud hospital rooms are associated with clinically significant sleep loss among patients and even may hinder recovery.”

So, nurses (and patients, MDs, others): can anything be done about this? Does your hospital do anything? Take our poll, and also of course feel free to leave a comment on this post.—JM, senior editor


Bookmark and Share

h1

Those Who Wait: Recent Work in ‘Art of Nursing’

December 19, 2011

By Sylvia Foley, AJN senior editor

Beach Stone Found by mscaprikell, via Flickr

“I held that stone / in my hand for hours while they split your bones,” says the narrator of Janet Parkinson’s poem “Talisman,” which appears this month in Art of Nursing. The poem speaks to the tremendous strain of waiting for the outcome of a loved one’s emergency surgery. It’s about the  need for connection over great distances, for a “stone constant” in the face of grave uncertainty. The poet’s voice is unsentimental and steady, and the poem, just seven lines, itself feels almost talismanic. (Art of Nursing is always free online—just click through to the PDF file.)

In Roger Davies’s poem “Preparing to Pretend to Knit at the Chemotherapy Clinic,” featured in October’s Art of Nursing, a husband also waits, feeling helpless. “I’ll choose the long, elegant needles,” he says, imagining homespun wools dyed in autumn colors. Recalling his mother’s “nonchalant / competence” at the craft, he longs for the solace found in knowing what to do—even if it’s only how to hold the needles. In the poem’s last lines, the narrator says, “I could look out the window / to this fading autumn day.” But it’s clear that he’s not quite ready to see that view yet.

The Waiting Room: Norma, copyright 2010 Rebecca Thomas

Rebecca Thomas’s painting “The Waiting Room: Norma,” featured in November, depicts the artist’s grandmother, who gazes out at us, her expression both yearning and fierce. She seems to lean forward slightly into a blurred foreground, much as one might lean into an unknown future. About her grandmother, Thomas writes:  “She lived through lymphoma. Her husband didn’t. Now, the cancer and my grandfather are gone from everywhere but her face in this moment—her ‘waiting face,’ right before the smile.”

We invite you to pause with these works for a few minutes and listen for what resonates within you. And if you’re interested in submitting your own work to Art of Nursing—we consider visual art, “flash” fiction, and poetry—email me for guidelines: sylvia[dot]foley[at]wolterskluwer.com.

Bookmark and Share

h1

Reading Between the Whiteboard Lines in the ICU

December 15, 2011

By Marcy Phipps, RN, a regular contributor to this blog. Her essay, “The Soul on the Head of a Pin,” was published in the May 2010 issue of AJN.

My hospital uses dry-erase whiteboards as a tool to communicate with patients and family members. Mounted to the walls in the patients’ rooms, the boards are prominent and concise.  Aside from a lot of basic information, notes get added to the board when diagnostic tests are completed, when complementary therapies have been implemented, and when housekeeping staff visit. The “meat” of the board, however, is the section that addresses plans and goals for the day. The plans and goals are updated and modified continuously by nursing staff. They’re specific to each patient, yet, despite their personalization, the goals for ICU patients tend to fall into distinct categories.

The first category includes goals which are often set by the patients themselves. They tend to require a certain amount of collaboration and active participation. These types of goals, which include things like “maximize incentive spirometer use,” “ambulate,” and “advance diet,” imply a relatively healthy state and tend to predict transfer orders.

The next type of goal is aimed at restoring health and stability. These goals don’t necessarily require patient participation and often focus on pathophysiologic processes. On the whiteboards of these rooms, the listed goals are likely to include things like “wean ventilator,” “control agitation,” “control fever,” or “increase level of consciousness.” In these cases, the goals are often of more interest to the family members than the patients.

The most critically ill and unstable patients are the hardest people for whom to establish goals, and sometimes the immediacy and focus required to support these patients preclude the time required to formulate and write goals on a dry-erase board. The more pressing the needs of the patient, the briefer the goals tend to be, and the brevity often portends the gravity of the situation: “oxygenate,” “ventilate,” “perfuse.” The goal “live” also belongs to this category, although decorum discourages writing “live” as the plan for the day.

Overall, the whiteboards are excellent communication tools. Although they’re not always utilized or appreciated by the ICU patients themselves, they often serve as touchstones for family members, who take comfort in written updates and established goals. They provide a different kind of communication to the nurses, though. In a unit where stability can be as fleeting as a dry-erase marker, the whiteboards sometimes provide a snapshot of general direction—especially for those reading between the lines.

 Bookmark and Share

h1

Health Care Work and Hypochondria: When Knowledge Equals Fear

December 14, 2011

Photo by Morrissey, via Flickr

By Amy M. Collins, associate editor

This Thursday I will graduate. Not from college—sadly, that was many years ago. Rather, I will finish a health anxiety class, taken in desperation when untimely hypochondria struck. I admit it. I’ve always been a bit of a worrier when it comes to health and illness. Working as a health care writer/editor doesn’t always help. I just have too much information at my fingertips, and a brain that jumps to the extreme (a pain in the side can mean cancer, and so on).

Before getting a degree in writing and journalism, I studied human biology with the intention of going into some type of health care work. But reading about diseases made me start to self-diagnose with fervor, so I decided to switch majors. And this was before the advent of the Internet, where one can constantly consult “Dr. Google.”

Years ago, while working at a medical publishing company in Spain, things got worse. I was put on the cardiovascular beat, which only increased my health fears. Diagnosed with mitral valve prolapse as a child, and on medication for arrhythmia at the time, reading about this particular disease made my heart literally flutter. My boss, recognizing my discomfort, took me off the topic and asked me to instead write about prostate cancer, benign prostatic hyperplasia, and erectile dysfunction—all conditions I could never get myself. Read the rest of this entry ?

h1

‘A Passing Shadow’: The Abiding Uncertainty of Cancer Survivorship

December 5, 2011

My husband and I wake into the narrow December dark. He brushes his teeth, dresses, then busies himself as I eat breakfast. His packed suitcase sits by the back door. It’s 5 AM, two days before Thanksgiving. At precisely 9 AM, the surgeon will remove my husband’s right kidney, the one he is 99% sure is cancerous.

That’s the start of “A Passing Shadow,” the December Reflections column in AJN. Written by Gail Lukasik, a poet and the author of several literary mysteries, this hopeful but tonally nuanced piece vividly evokes the uncertainty that all cancer survivors and their loved ones must live with. Click the link or the image above to read it in entirety.—JM, senior editor

Bookmark and Share

h1

Thanksgiving in the ICU: Woven into the Tapestry of Traditions

November 22, 2011

By Marcy Phipps, RN, a regular contributor to this blog. Her essay, “The Soul on the Head of a Pin,” was published in the May 2010 issue of AJN.

cranberries

I’ll be working this Thanksgiving. I’ve worked so many Thanksgivings that the ICU feels woven into the tapestry of my own traditions. I don’t really mind; the cafeteria serves a fitting feast that’s embellished by the homemade treats we bring in, and although we won’t actually be watching it, the Macy’s parade will be on. Somehow, the smells and sounds I associate with the holiday will mix and mingle with the usual bustle of critical care, and it’ll feel like Thanksgiving. It’s actually a nice day to be at the hospital—for the nurses, that is.

For our patients and their families, I know hospital holidays fall far short. We have one patient, in particular, who’s been with us for a while. Her husband’s been a fixture at her side throughout her stay, and I expect to find him stationed there this Thanksgiving. Hospital turkey and television won’t give him the comfort or peace that he seeks, and I don’t know that he’ll be giving thanks. For many weeks I’ve watched him skirt a fine line between gratitude and despair; things could always be worse, but they could certainly be better.

When I stop to count my blessings, I’m overwhelmed. I belong to a profession that I’m passionate about—one that brings me great joy. I work with people I care about and like so much that I look forward to spending a holiday with them. And at the end of the day I’ll be going home, where my family will be waiting for me, and I’ll hug my kids and count my blessings all over again.

Bookmark and Share

Editor’s note—some AJN Thanksgiving posts from past years:

Brief Notes on Thankfulness (and the Nursing Profession)

Turkey, Sweet Potatoes, and Living Wills

h1

Staff Nurses at the Center: Joyce C. Clifford’s Still Radical Notion

November 4, 2011

By Katheren Koehn, MA, RN, who is a member of the AJN editorial board

It was with great regret that I read of the passing of Joyce C. Clifford last week. She was a nurse whose career as a nurse administrator and leader was spent empowering nurses, from the bedside to the boardroom. Much has been written since her passing about her nursing leadership at the administrative level. I would like to take some time to recognize her as a nurse leader who empowered nurses at the bedside.

I first learned of the work of Joyce C. Clifford from a staff nurse who’d moved from Boston to Minneapolis in the late 1980s. The entire time this nurse and I worked together she was in mourning for the hospital and job she’d left behind in Boston. Almost every day she talked about how wonderful Beth Israel was and how great it had been to be a staff nurse there. She talked about primary nursing, nurse autonomy, and interdisciplinary respect. At the time, none of these terms were familiar to me, but I knew she was telling me that “my” hospital, where she now worked, could never measure up to the fabulous BI.

I next learned of the work of Dr. Clifford through the book Code Green: Money-Driven Hospitals and the Dismantling of Nursing by Dana Beth Weinberg. In this book, Ms. Weinberg described the nursing environment that had been created under Dr. Clifford’s leadership:

When Beth Israel Hospital adopted primary nursing on its inpatient floors in the 1970s, the hospital also adopted a host of new organizational arrangements. The architects of Beth Israel’s professional nursing practice argued that by meeting nurses’ needs, the hospital simultaneously met those of patients. Beth Israel organized itself around nurses’ work, supporting and encouraging the work that nurses did with patients.

Organizing a hospital around nurses’ work, encouraging the work that nurses did with patients! Those are sweet words to a staff nurse’s ears. No wonder my nurse colleague was mourning the job she’d left when she moved to Minneapolis! Read the rest of this entry ?

Follow

Get every new post delivered to your Inbox.

Join 259 other followers