Archive for the ‘patient perspective’ Category

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Incomplete Combustion: Crohn’s, Motherhood, a New Normal

June 14, 2013

April Gibson is an essayist, poet, and ostomate. She holds an MFA in creative writing from Chicago State University. In her writing she seeks to address and renegotiate societal beliefs about motherhood, illness as alienation, beauty as a shell. Her work is published or forthcoming in Tidal Basin Review, Reverie, The New Sound, Aunt Chloe, AsUs and elsewhere. She lives in Chicago with her two sons. 

AprilGibsonTwenty-one days pass. I am a 90-pound bag of skin. Legs like peanut butter drapes thrown over femur bones, no muscle, no pronounced curve. A lover would look past me quickly in the street. I do not want these scars, or this strange body. I want to wear a red bikini. I want a kiss on my belly.

Three weeks felt like spans of small forevers. I didn’t believe my legs and arms were mine. My abdomen sunk to a cave, save for the rustling bag. My aunt hurled the word “unconscionable” on each visit, until the hospital knew her voice. My mother, grandmother, aunts, they stayed in mornings, my little brother stayed through late nights, nodding off once the drugs snatched my eyes to sleep. So many people, one could’ve mistaken my bed for a box. I can’t remember them all, or even all the days.

The nurses were there everyday, same ones. This is their wing. The doctors came in swarms, always hanging heads to pens unless speaking. I wore lipstick when we passed the vomit days, gave laughs to friends. My big sister gave me big twists in my hair.

A disease that had already stolen my youth, at 27 I lost my colon to Crohn’s. When they removed the sick parts, cut away the damaged pieces, they also took the one feeling my body understood. Pain is a tricky thing, illness a confusion of sense. A piercing touch, the sight of blood, a smell can make you puke. A sound can make your head bang. The metallic taste of medication can make you want to quit. I never knew what healthy felt like. It was all so strange.

The functions of me were foreign. I would never work the same.

At first I looked for clothes with ruffles and flares. I cried at the sight of a middriff top I’d purchased the summer before. I would never again wear low-rise jeans, or bikinis, or mesh articles of any kind. I would never undress myself with pride. There were vows to celibacy, thoughts of a hermit life—all sorts of ridiculous ideas. My best friend reminded me I never really wore middriffs much, anyhow. Old pictures reminded me a decade had passed since I’d worn a two-piece swimsuit, then there was the recollection that I couldn’t actually swim. A small step to recovery.

The same Band-aid stuck to my body for a lifetime. This is what permanency feels like. On the right side of belly, I carry the burden of desperation, the things we humans do to stay alive. My caramel skin sticky with adhesive and the color of someone else’s nude. The beige bag flattened under all that I wear, who could ever guess my unbalanced geometry. No one ever had to see the off parts of me, unless there was a man to love me despite, and still, there are ways to hide from the world. Wraps and lace, pockets of all kind. I can never truly be a naked girl. I live in a time warp of constant repair, fixing. Never fixed. My body working its way around the darkness that knows to fill a space. Read the rest of this entry ?

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Science and Suffering: My Two Months Battling the Aliens

June 12, 2013

By Ronald Pies, MD, professor of psychiatry and lecturer on bioethics and humanities, SUNY Upstate Medical University, Syracuse, New York; clinical professor of psychiatry, Tufts University School of Medicine, Boston; editor-in-chief emeritus of Psychiatric Times. Dr. Pies is also the author, most recently of, The Three-Petaled Rose, an exploration of the synthesis of Judaism, Buddhism, and Stoicism (iUniverse).

Doyle Alphabet by fdecomite, via Flickr

Doyle Alphabet by fdecomite, via Flickr

It all started suddenly: weird, creeping sensations in my forehead and between my eyes, especially when I lay on my back or bent my head forward. The expression “my skin is crawling” quickly came to mind. Over the next few days, I began to experience intense pressure in my forehead and a weird sensation on the bridge of my nose—as if a large clothespin had been clipped onto it. Within a few days, it felt like someone had poured a sack of concrete into my head.

My self-diagnosis was sinusitis—a term that covers many etiologies. But most cases of sinusitis begin with head or facial pain and nasal discharge—not the strange sensations my wife and I soon started calling “the aliens.”

Nevertheless, I began an aggressive self-treatment program: decongestants, aspirin, and something called a Neti pot—an ancient form of nasal irrigation using a vessel resembling a small, plastic teapot.

After a couple of days, my symptoms were considerably milder—but by no means gone. I saw my primary care doctor a few days later, and—despite the “alien” sensations—he concurred with my diagnosis. Antibiotics are notoriously overprescribed for sinusitis, and my very conservative PCP was not about to do so. Steroid nasal sprays are also used, and I asked Dr. G. if he’d consider a trial.

“Nope!” he replied, “I’d like you to see an ENT. If you have a nasal polyp, I don’t want to shrink it with steroids and miss the diagnosis.”

I nodded in agreement, but I was disappointed. My doctor was talking the language of science—“Don’t introduce extraneous variables into your investigations”—and I was wagging the tongue of misery. Read the rest of this entry ?

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‘The Nurse Who Changed My Treatment’

May 29, 2013
By Annalisa Ochoa, for AJN. All rights reserved.

By Annalisa Ochoa, for AJN. All rights reserved.

Two years ago, when I was diagnosed with advanced lung cancer in the ED of a large urban hospital, I asked a nurse if I could borrow her cell phone. Without hesitation, she handed me her Blackberry—this simple gesture was a first indication of the solidarity I’d come to feel with the nurses whose kindnesses have helped me heal.

We think it’s important to sometimes include a patient perspective in our monthly Reflections essay. “The Nurse Who Changed My Treatment,” the June Reflections essay, is by Nila Webster, who writes about the gestures by nurses, the little kindnesses and words of wisdom and encouragement, that helped her during her treatment for lung cancer and made her feel seen and understood. The essay is free, and short, so please click the link and give it a read.—JM, senior editor

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Finding Future Leaders – and a NICHE in Nursing

April 15, 2013

By Maureen Shawn Kennedy, AJN editor-in-chief

It has been a hectic few weeks, as I’ve been traveling to the early spring nursing meetings (with still more to come).

With John Gransbach at NSNA meeting

With John Gransbach at NSNA meeting

First I went to Charlotte, North Carolina, to attend the National Student Nurses Association (NSNA) annual meeting (April 3–7). AJN has had a long association with the NSNA, supporting it in various ways since its 1952 founding, from hosting board meetings at AJN offices to producing the convention newsletter to convention scholarships for key contributors. In recent years, we’ve sponsored travel expenses to the annual meeting for the winner of Project InTouch, the member incentive plan. This year, the winner was John Gransbach, who graduated from the Goldfarb School of Nursing at Barnes-Jewish College in St Louis. He recruited 228 new NSNA members—an achievement certainly worth recognizing.

Future leaders. As I told the audience when I presented the plaque to Mr. Gransbach, this award isn’t just about growing membership in the NSNA—it’s about contributing to the future of the profession. Students who join the NSNA are already demonstrating a commitment to nursing by going beyond what’s required of them. They’ve joined an organization that provides considerable resources to help them begin their careers. Not only does it provide practical help with passing the NCLEX exam, writing a resume, and finding a job, but it informs them about what it means to be a nurse. NSNA members are the future of nursing and likely the future leaders of nursing. We’re pleased to support this award and NSNA.

NICHE. And this past week I was in Philadelphia for a meeting of the Nurses Improving Care for Healthsystem Elders (NICHE) initiative, a program based at New York University College of Nursing that seeks to provide education and resources to improve care for hospitalized older adults. It provides training curricula and tools to the 450 hospitals that are members of the NICHE network. Much of the agenda focuses on initiatives that NICHE members have successfully implemented to improve care.

NichePhotoAJN partnered with NICHE in a joint initiative, “Professional Partners Supporting Diverse Family Caregivers Across Settings,” funded by the Jacob and Valeria Langeloth Foundation in collaboration with the AARP Foundation. (Pictured in the photo are, from left: Liz Capezuti, director, NICHE; Susan Reinhard, senior VP, AARP Public Policy Institute; Rita Choula, program manager, strategic initiatives, AARP; myself.)

Helping family caregivers. We worked with NICHE to develop a series of articles and videos designed to teach nurses concepts and skills to help them better support family caregivers in assuming care for loved ones after hospital discharge. These materials were used in training staff and as a basis for developing family-centered practices, which were then piloted in five NICHE hospitals. Dennise Lavrenz, the NICHE coordinator on the project, presented some initial results that were encouraging. Overall, as measured by Hospital Consumer Assessment of Healthcare Providers and Systems (HCAPS) scores, caregivers showed increased satisfaction with their experience and with staff communication and felt more prepared to care for family members.

At the meeting, presenters from Carolinas Medical Center-Mercy in Charlotte, North Carolina, discussed their success in improving caregivers’ experience through employing a caregiver assessment tool, paying closer attention to caregivers’ information needs, and providing the caregiver with a tote bag of personal items for their use when their family member was admitted to the hospital. What started as a nurse-driven pilot on two units was now being rolled out hospital-wide—certainly a success story for the nurses who spearheaded the project and and the hospital, but most of all, a win for the caregivers.

The NICHE Web site offers a wealth of information; you can also find AJN-produced, foundation-funded resources for caring for older adults at this Web page; or access AJN’s family caregiver videos here.

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Downsizing with Dementia

March 29, 2013
fence 2

Photo by Shawn Henning, via flickr.

By Amy M. Collins, editor

I’ve blogged before about my grandmother and her dementia, which has long since been staking a claim on her memory. A few years ago I wrote a post called “No Country for Old Women.” In it I tried to describe the feeling of helplessness that my family felt when a series of providers had failed to diagnose the cause of sudden delirium superimposed on dementia . . . a frustrating game of hot potato had ensued, with each physician passing her around to the next. It ended when a nurse finally diagnosed her with an impaction.

A similar sinking feeling strikes me as her dementia advances, and again, there seems to be no place for her to go. At her independent living center, we know she’s just barely scraping by. If it weren’t for the nurse we hired to keep an eye on her each day, her difficulty living there would be much more obvious.

Our nurse faithfully calls to let us know when my grandmother has forgotten to shower; when she’s been seen in the same clothes a few days running; when she won’t stop cleaning the break room, the distant memory of her long-standing career as a housewife stubbornly clinging to her; when she’s been found wandering the corridors at night. I think we’ve kept her there so long because everyone there loves her, she’s allowed to have a cat (the one thing she can remember), and for the family caregiver—my mother—the difficult decision of uprooting her and moving her again is an agonizing one.

But the independent living facility can only watch her so closely; these centers aren’t equipped to handle all of her health care needs. Their solution is to hire more outside nurse power, but that adds a lot of money to an already expensive situation. Now we are looking to move her to an assisted living home that has four “levels” of intensity of care—or as my mom joked, the four rings of hell—from just the occasional reminder to shower to full-fledged diaper patrol. A social worker at this new facility assessed my grandmother yesterday, and she didn’t necessarily pass with flying colors.

“Are you a widow?” the social worker asked.

“No,” my grandmother replied, despite the fact that my grandfather died 10 years ago. “I mean . . . I don’t see my husband all that often, but he’s not dead.” Subsequent questions got similar answers, her short-term memory loss painfully apparent. This isn’t to say she doesn’t still have a sharpness to her—when asked what year it is, she replied, “well, what year was last year?” When she was told that last year was 2012, she smiled and said “well then it’s 2013.”

The social worker said she was at “level 2” and wasn’t sure if the facility was equipped to deal with this kind of memory loss. Well, then, who pray tell is? Who else goes to live in assisted living, where many residents must be reminded to shower and eat, if not those who suffer memory loss? Perhaps there are places that solely deal with patients with dementia, but my grandmother is still social, physically fit, and active. The hard thing is to balance her particular health care needs with a place that still seems like a home, not a jail or some sad, dreary version of limbo.

If she does get the green light to live in this new center, she will need to have a roommate in order for Medicaid to contribute to the enormous cost of paying for assisted living. It was sad enough when she went from a house—with her many belongings and the beautiful paintings she executed before the disease took her artistic capabilities away too—to a small room with a faux stove and hospital-style bathroom. Now she must go from that to sharing a room with a complete stranger. She’s not allowed to bring her cat. As her dementia grows, she must downsize. It’s sad to think of what the next “level” will bring. The cruelty of dementia is that it only leaves you with the here and now, the right this second. It doesn’t only take away your memory, your dignity, your family and loved ones, who you stop remembering and can’t recognize. As in this case, it also takes away your sense of home.

Some resources for caregivers of people with Alzheimer’s disease and dementia can be found here:

The Alzheimer’s Association
http://www.alz.org

The Alzheimer’s disease Education and Referral Center (from the National Institute on Aging)
http://www.nia.nih.gov/alzheimers

Healthinaging.org
http://www.healthinaging.org/home-and-community

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‘Patient Activation’: Real Paradigm Shift or Updated Jargon?

February 7, 2013

By Jacob Molyneux, AJN senior editor

I attended a Health Affairs briefing yesterday in Washington, DC. Based on the February issue of the journal, it was called “A New Era of Patient Engagement.” A lot of research money appears to have been flowing to this area in recent years.

Our January article on "Navigating the PSA Screening Dilemma" includes a discussion of 'shared decision making'

Our January article on “Navigating the PSA Screening Dilemma” includes a discussion of ‘shared decision making’

The basic idea isn’t entirely new to anyone who’s been hearing the term “patient-centered care” for a long time: as Susan Dentzer writes in “Rx for the ‘Blockbuster Drug’ of Patient Engagement,” a useful article summarizing the main ideas raised in the Health Affairs issue: “Wherever engagement takes place, the emerging evidence is that patients who are actively involved in their health and health care achieve better health outcomes, and have lower health costs, than those who aren’t.”

One might add to these projected benefits: better experiences as patients.

Something’s got to change, so why not this? If many nurses feel they’ve heard all this before, the sense of a health care system in necessary flux is particularly acute right now, with mounting pressures from an aging Baby Boom generation with its full complement of chronic conditions, not to mention federal budget constraints and the influx of patients expected from the Affordable Care Act. It’s unlikely we’d be talking so much about patient engagement if we weren’t facing, perhaps as never before, the need to do something about the glaring gap between costs and quality in the U.S. health care system.

Patient activation. A term that got a huge amount of use at the briefing was “patient activation.” Hibbard and colleagues define it thus, in an article on the the evidence for cost reductions associated with patient activation: “understanding one’s own role in the care process and having the knowledge, skills, and confidence to take on that role.” Some examples of patient activation they cite are patients with type 2 diabetes performing regular foot checks and keeping a glucose diary, or patients who regularly exercise and get relevant screenings.

Don’t write off certain type of patients. Many of the presenters emphasized that it’s important to see patient activation as a possibility for every patient, whatever their socioeconomic level, disease severity, or cognitive limitations. As Hibbard put it, “there are more or less activated patients in every demographic.” Providers need to meet patients where they are and, as Marion Danis put it in an article on the ethical justification for getting patient activation right, set goals and have realistic expectations.

The physician problem. Many presenters noted that, without support from the health care system, individual efforts may not make much of a difference. In addition, physician resistance was mentioned repeatedly, whether attributed to their lack of time, their skepticism, or the overly common belief that more expensive care is always better. Bernabeo and colleagues observed that even those physicians who advocate shared decision making may not always engage in it. Their article on necessary competencies posits four crucial elements for true patient engagement: system support, providing patients with decision aids, collaborations and teamwork (can anyone say nurses?), and new reimbursement models.

Lin and colleagues, in looking at efforts to distribute decision aids in primary care practices, also noted physician-based problems with furthering patient activation, discovering that physicians

  • didn’t see a role for patients in their own care.
  • believed they lacked the time to give them decision aids.
  • didn’t see a potential benefit in doing so.

They also found, again unsurprisingly, that clinical support staff embraced the concept far more than the physicians did. Read the rest of this entry ?

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How Perioperative Medication Withholding Affects Patients with Parkinson’s Disease

February 4, 2013

By Sylvia Foley, AJN senior editor

The timing of antiparkinson medications has pro­found implications for motor and cognitive function.… If perioperative surgical staff aren’t sufficiently aware of the importance of minimizing disruptions to patients’ antiparkinson medication regimens, prolonged medi­cation withholding of several hours’ duration can occur. And patients with Parkinson’s disease whose doses are delayed may deteriorate quickly.

In January and again this month, we bring you a pair of CE–Original Research articles that describe the findings of two companion studies on how perioperative medication withholding affects patients with Parkinson’s disease. Here’s a short summary.

The quantitative study—what the EHRs said. The first article, “Perioperative Medication Withholding in Patients with Parkinson’s Disease,” discusses the results of a retrospective review by Kathleen Fagerlund and colleagues. The authors reviewed the electronic health records (EHRs) of 67 surgical patients who had undergone 89 surgeries unrelated to Parkinson’s disease. They looked at the duration of perioperative withholding of carbidopa-levodopa (Sinemet)—the gold standard treatment for Parkinson’s disease, it has a short half-life of just one to two hours—and at symptom exacerbations.

What they found was that medication withholding tended to be prolonged. The median duration of withholding for 32 inpatient and 57 outpatient procedures was more than 16 hours and more than 11 hours, respectively. They also found that for 56% of the inpatient procedures, the patient’s EHR contained a note referencing Parkinson’s disease symptoms or symptom management, which included increased agitation or confusion, increased tremors, and symptom management complicated by pain or pain medications. (Because outpatient EHRs contained minimal nursing notes and patients were discharged quickly, only inpatient EHRs were reviewed.)

figure_captureThe authors offer several recommendations, which include a call for improved nursing education about Parkinson’s disease; they state,

nursing education should stress the importance of patients continuing to take their antiparkinson medications with a sip of water up until shortly before the initiation of anesthesia, and of their resuming these medications as soon as possible after surgery.

The qualitative study—the patients’ take. The second CE, “The Perioperative Experience of Patients with Parkinson’s Disease,” discusses findings from a qualitative study by Lisa Carney Anderson and Kathleen Fagerlund. Read the rest of this entry ?

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Shared Decision Making and PSA Screening

January 23, 2013

PSA article screenshot“Should men get PSA tests to screen for prostate cancer?”

The Wall Street Journal posed the question in an informal, online poll last September. An accompanying article featured a debate between Richard Ablin, who’d discovered the prostate-specific antigen (PSA) in 1970, and an oncologist, Oliver Sartor. Ablin argued that the PSA test should be used only to screen men with a family history or active symptoms. For all other men, he said, a coin toss would be as effective. Sartor countered that the test finds cancers that can be treated early, acknowledging that for most men surveillance instead of active treatment is appropriate. Ablin retorted, “If we really could determine which cancers need treatment and which don’t, we wouldn’t be having this debate.”

The passage above is from this month’s AJN Reports by Joy Jacobson, “Navigating the PSA Screening Dilemma.”

The article gives a great overview of one of the big screening debates of the moment. Many of these debates are driven by changes in guidelines along with a dawning awareness in the medical community that certain tests we’ve assumed to be wholly beneficial, wholly necessary for most patients, may in fact be more harmful than not for many patients, leading to unnecessary treatment, anxiety, and waste of valuable resources.

The article also incorporates a discussion of the role being envisioned for “shared decision making” in helping patients make informed choices that are right for them. Let us know your take as a nurse or a patient, or both.—Jacob Molyneux, senior editor

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Original Research: Perioperative Medication Withholding in Patients With Parkinson’s Disease

January 18, 2013

Drawing of the face of a Parkinson's disease patient showing characteristic symptoms: mainly hypomimia, a expression-less mask-like face. Appeared in Nouvelle iconographie de la Salpétrière [Tome 1] : clinique des maladies du système nerveux / publiée sous la direction du professeur Charcot,... ; par Paul Richer,... Gilles de la Tourette,... Albert Londe,.... - 1888. Chapter "Habitude exterieure et facies dans la paralyse agitante". Plate XL1V

1888 drawing of face of a Parkinson’s patient revealing “characteristic symptoms: mainly hypomimia, a expression-less mask-like face.” Appeared in Nouvelle iconographie de la Salpétrière [Tome 1] : clinique des maladies du système nerveux./Wikimedia

Here’s the abstract of our January original research CE article, “Original Research: Perioperative Medication Withholding in Patients with Parkinson’s Disease: A Retrospective Electronic Health Records Review.”

Abstract

Background: Carbidopa-levodopa (Sinemet), the gold-standard treatment for Parkinson’s disease, has a short half-life of one to two hours. When patients with Parkinson’s disease are placed on NPO (nil per os, or nothing by mouth) status for surgery, they may miss several doses of carbidopa-levodopa, possibly resulting in exacerbation of Parkinson’s disease symptoms. Clear guidelines regarding perioperative symptom management are lacking.

Objectives: The goals of this study were threefold: to measure the perioperative duration of the withholding of carbidopa-levodopa in patients with Parkinson’s disease, to record the time of day surgeries were performed on these patients, and to record perioperative exacerbations of Parkinson’s disease symptoms.

Methods: We conducted a retrospective review of patient electronic health records at a Midwestern public medical center. After applying inclusion and exclusion criteria and evaluating the eligible records, we had a final sample of 89 separate surgical events for 67 discrete patients who had been diagnosed with Parkinson’s disease, had undergone any type of surgery excepting Parkinson’s disease surgeries, and were taking carbidopa-levodopa.

Results: The median duration of carbidopa-levodopa withholding was 12.35 hours, with most surgical procedures (86%) starting at 9 AM or later. The most commonly reported exacerbation of Parkinson’s disease symptoms was agitation or confusion.

Conclusions: For best symptom management, careful consideration should be given to scheduling surgery at the earliest possible time, administering medications as close to the patient’s usual dosing schedule as possible, and providing nursing education about optimal medication management for this patient population.

This will be the first of two CE articles we run on Parkinson’s disease. Following this report of findings from a quantitative study exploring symptom management and antiparkinson medication withholding times during hospitalization, the second article will report on “findings from a qualitative study of patients with Parkinson’s disease that focused on their hospitalization experiences, particularly with medication withholding.”


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Precarious Hope: A Hospice Nurse Balances Truth and Kindness

December 14, 2012

This couple might be your elderly neighbors: he helps his wife into the house as she moves slowly, step by unsteady step, in time with her four-point cane; at the same time, you know that he is recovering from recent chemotherapy treatments. Or they may be your aging parents: your mother’s role as primary caregiver hampered by her right leg weakness from a stroke and advancing heart disease, while your father needs more care from day to day as his renal failure approaches the decision to begin dialysis or not. They support and care for each other.

PrecariousHopeIllustrationThe December Reflections column in AJN, “Precarious Hope,” is by an RN case manager at a hospice. She describes a couple in which one partner has dementia and the other has cancer, their mutual dependency, and the challenge of knowing how best to care for them:

In hospice, I’m often confronted with the difficulty of balancing honesty with kindness. I love a quote often attributed to the Buddha: “When words are both true and kind, they can change our world.” It follows that sometimes what is true is not kind, and that truth must be cloaked in kindness—as in this instance, as I sit at the table listening to George, whose hopeful, unrealistic comments confirm that he simply can’t hear the truth.

It’s a sensitive portrait of love, the fine line between self-delusion and perseverance, and the way that sometimes simply bearing witness is the best way to help someone. The essay is short, and well worth your taking a moment to read in entirety. It’s also open access, so click on the article link above or on the illustration itself, give the essay a read, and let us know what you think. (For the best version of the article, click through to the PDF version.)—Jacob Molyneux, senior editor

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