Archive for the ‘patient perspective’ Category


Strong Nurse and Patient Voices On the Blogs This Week

February 20, 2015

By Jacob Molyneux, senior editor/blog editor

Photo by mezone, via Flickr.

Photo by mezone, via Flickr.

Here’s a short Friday list of recent smart, honest, informative blog posts by nurses, as well as a couple of interesting patient perspectives on prominent types of chronic illness and the ways they are talked about by the rest of us.

At Head Nurse, in “Yes…No. I’m Having Some Thoughts About BSNs,” an ADN-prepared nurse makes some familiar and some more surprising observations about the effects of the new policy of hiring mostly BSN-prepared nurses at her facility as it tries for Magnet status. For example, one of the effects she notes is “a massive drop-off in terms of the diversity of our nursing staff.” The move toward BSNs is obviously the trend in nursing, and is supported by research, but this doesn’t mean that there aren’t still two sides to the issue, or real unintended consequences to address as this change is gradually implemented.

At Hospice Diary, the blog of hospice nurse Amy Getter, there’s a post called “Hearts, Flowers, and Bucket Lists.” Reflecting on the imminent death of a patient, the author puts the popular notion of bucket lists into perspective:

“I think about some of the things I would still like to do in my life, and realize . . . . most of those wish-list items would be swept away in a moment, if I only had a little time this week. I would hug my kids harder and love more, and want to squeeze every last drop of time to put into my relationships that I will have to leave behind. “

Staying with the end-of-life theme for a moment longer, you’ll find at Pallimed, a very good hospice and palliative medicine blog, a new post with a to-do list that some of us or our loved ones really can’t put off until next month or next year: “10 Practical Things to Do When Diagnosed With a Serious Illness.”

Two consistently good nurse bloggers, both of whom have written for this blog or for the journal itself from time to time, happen to have reviews of books about aspects of nursing on their blogs this week. Read the rest of this entry ?


A Little Levity to Ease the Family Caregiver’s Burden

February 2, 2015
Illustration by Hana Cisarova for AJN/All right reserved.

Illustration by Hana Cisarova for AJN/All right reserved.

According to the CDC, almost 21% of households in the U.S. are affected by family caregiving responsibilities. The pressures and costs of this unpaid labor of love have been well documented.

This month’s Reflections essay, “Swabbing Tubby,” is written from the family caregiver perspective rather than that of a nurse. It’s about the wife and two adult daughters of an ailing older man as they are coached in one of the skills they will need to care for him at home.

It’s a tough situation, but one in this case leavened by the ability of these three women to laugh a little at the more absurd aspects of their predicament. Here’s the beginning:

In retrospect, I can’t help feeling sorry for the earnest young woman who tried so hard to show my mother, my sister, and myself how to hook up our brand-new, at-home, IV feeding device. She was all of 25, with the freshly scrubbed look of a young schoolgirl. Her youthful perkiness was no match for the trio of exhausted, crabby women who faced her across the empty hospital bed. Dad was down in X-ray having yet another CT scan, and the three of us were awaiting instructions on do-it-yourself intravenous feeding.

It’s not that they don’t take what they’re doing seriously or appreciate the training they are being given, or care for their suffering husband or father. But nurses know as well as anyone that resilience in the face of round-the-clock responsibility for another’s health and comfort demands more than just strong will—humor can be a crucial tool of those with real staying power. Read the rest of this entry ?


So You’re a Nurse With a Story to Tell…

January 30, 2015

Madeleine Mysko, MA, RN, coordinator of AJN’s monthly Reflections column, is a poet, novelist, and graduate of the Johns Hopkins Writing Seminars who has taught creative writing in Baltimore for many years.

karindalziel/ via Flickr Creative Commons

karindalziel/ via Flickr Creative Commons

Whenever I meet someone new who happens to be a nurse—in both clinical and social settings—I wait for the right moment to mention my work at AJN on the Reflections column. It’s not only that I’m proud of the column. It’s also that I’m forever on the lookout for that next submission—for a fresh, compelling story I just know is destined to shine (accompanied by a fabulous professional illustration) on the inside back page of AJN.

“I imagine you have a story or two to tell,” I’ll say to a nurse I’ve just met—which is the same thing I say, whenever I have the chance, to nurses I’ve known for years. I mean it sincerely; given the vantage point on humanity that our profession affords, I actually do believe that every nurse is carrying around material for a terrific story.

The response I usually get (along with a wry smile, the raising of eyebrows, or a short laugh) is, “Oh yes. I have stories.”

But then—even as I’m mentioning the Reflections author guidelines, even as I say warmly that we’re eager to read—I can sense the backing away.

“Sure,” the nurse will say. “I’ll check it out . . . but the thing is, I’m not exactly a writer.”

Photo by mezone, via Flickr.

Photo by mezone, via Flickr.

How to explain it?—how to explain that we aren’t so much looking for nurses who are good writers as we’re looking for essays well written by good nurses.

If you’re still with me in this scenario (and especially if you’re someone not exactly inclined to sit down before breakfast on your day off and pen a gem of an essay) maybe you could let me know what you think of this pitch: Read the rest of this entry ?


Cassandra’s Refusal of Chemo: Nurse Ethicist Ponders Ethics of Forcing Treatment

January 21, 2015

Douglas Olsen is an associate professor at the Michigan State University College of Nursing in East Lansing and a contributing editor of AJN, where he regularly writes about ethical issues in nursing.

scalesThe case of Cassandra, a 17-year-old female in Connecticut being compelled by the court to undergo chemotherapy for Hodgkin’s lymphoma, has aroused interest in the media and among bioethicists, who have offered mixed conclusions. (Here’s a recent update on Cassandra’s legal status.) For example, Ruth Macklin concludes that the actions taken to force the treatment were not justified, while Arthur Caplan concludes that compelling her to have the chemo is justified. Both are scholars of the highest order.

I agree with Caplan that she should be given the chemotherapy, but my purpose here is to illustrate that perspective plays an often unacknowledged role in ethical analysis. When feelings and personal perspective go unacknowledged, the analysis loses credibility and depth.

The principles in conflict in this the case are straightforward for ethicists: respect for autonomy versus beneficence.

As a society, we value control over personal choice, that is, autonomy, which would mean honoring Cassandra’s decision to forgo the chemo. The chief justification for overriding a patient’s autonomy is that the patient lacks decision-making capacity because she is a minor.

However, we also value doing what is best for patients—beneficence —and this means giving the chemo. Within the principle of beneficence, the “best” course of action is the one my training and experience as a nurse tells me will result in improved health, more function, and better quality of life.

The chief justification for overriding beneficence is that a patient with decision-making capacity chooses to do otherwise. The ethically relevant controversies of this case include:

  • the nature of Cassandra’s decision-making capacity
  • the degree of benefit expected from the treatment
  • the degree of harm expected as a result of honoring her refusal

The law considers Cassandra, as a minor, to lack decision-making capacity. However, she would probably pass a clinical assessment of her decision-making capacity. Cassandra is about nine months from being 18, the age at which she would be assumed to have capacity. In similar cases, the law sometimes invokes the ‘mature minor’ doctrine and allows a teen with clinically determined decision-making capacity to make the decision. (Editor’s note: A 2007 AJN article by the author discusses a similar case; it’s free until February 28.)

Other facts supporting a choice to respect her autonomy are that her mother agrees with her refusal and that the patient published an articulate essay (log-in required) in the Hartford Courant describing her situation.

Arguments that might be made against choosing respect for autonomy over beneficence are that the reasons for refusing chemotherapy given by Cassandra and her mother, while understandable in terms of the desire to avoid chemotherapy’s side effects, seem shortsighted in terms of scientific facts about this disease and its treatment.

Read the rest of this entry ?


Long-Distance Coaching

January 9, 2015

Patrice Gopo is a writer living in North Carolina.

The author

Patrice Gopo

Moments ago I’d been crouching on my bed, but now I lay wrapped in a thick duvet. My panting began to slow to a normal cadence. Then a sharp rush. My midsection hardened, followed by intense cramping. With a swift motion, I moved from lying on the bed back to all fours.

“Find your point and focus.”

I heard my mother’s words through the speakers of the computer. My eyes locked on where the edge of the metal curtain rod met the white wall.

Around me, voices and images drifted away.

Before I gave birth to my first child, I didn’t know that between a tightening abdomen and waves of pain, Skype conversations were possible.

While I appreciated that technology could bring someone distant close, my mother wasn’t supposed to be a face on the computer. She was meant to be by my side and not in a living room 10,000 miles away. But my daughter had decided to slide down the birth canal 12 days before expected.

My mother describes herself as a practical person. “I’m a nurse. It’s in the job description,” she often says. When pregnant with her own firstborn—my older sister—her contractions began in the midst of an overnight shift in the labor and delivery unit. She completed the night’s job before calling to admit herself as a patient.

Three decades later, I asked her to be with me when I gave birth for the first time. As a nurse, my mother held expert knowledge about supporting the birthing process. In her lifetime, she had helped more laboring mothers than she could remember.

“I will come early,” she’d said about flying halfway across the globe from my hometown in Anchorage, Alaska, to my married home in Cape Town, South Africa. “I’ll help you finish last-minute preparations.”

What better birth coach could there be? Probably a birth coach in the same room as me. Just before the scheduled beginning of her 36-hour journey crossing the world, she called. “They won’t let me fly. My passport is expired.”

“What? But are you still coming? When are you coming?” I paced back and forth in an attempt to slow my building anxiety.

“Not to worry. Five days. I will be there in five days,” she said in a calm voice that reflected her even temperament.

After the call ended, I threw myself on my bed and put a pillow over my head as if the slight weight might soften my distress. Hours later, my Braxton Hicks contractions escalated to something with greater force.

That night—when my mother should have been 30,000 feet above the Atlantic Ocean—I squatted on the bathroom floor, the phone cradled against my ear. After another debilitating contraction left me with a whisper in my voice, I said, “Mom, I don’t think I can do this.”

“Yes, you can.” My mother’s positive, commanding words came through the phone line. “Your body is doing exactly what it should.”

The heightened adrenaline made it difficult for my husband and me to recall and implement skills from birth class. As each contraction seized me, I couldn’t visualize any relaxing image. During the one minute that my body tensed, I wanted to—and often did—curl myself up, as I envisioned my baby folded inside of me.

“Let’s talk on Skype,” my mother suggested.

Her solution meant we could see each other. She could watch my body language for clues to my pain level and readiness. Her coaching could be more directed. Across continents, she chatted as if this were a normal day and not the middle of the night during my first, and unexpectedly early, labor.

When the next contraction began, I heard her confident, steady voice telling me to choose a single point to focus on. Just stare there. I picked where the curtain rod butted up against the wall. Read the rest of this entry ?


‘Tables Turned': When the Patient’s Family Member Is a Nurse

January 7, 2015

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

Illustration by Eric Collins. All rights reserved.

Illustration by Eric Collins. All rights reserved.

Nurses are not always comfortable when a patient’s family member is also a nurse. In AJN’s January Reflections essay, “The Tables Turned,” a critical care nurse describes her attempt to navigate the role change from nurse to family member when her sister is hospitalized with multiple injuries after a bike accident.

Her sister is in obvious pain, but pain management is complicated by a low blood pressure. The author asks her sister’s nurse about alternative analgesics. She writes:

“The nurse, perhaps caught off guard by my question, answered abruptly: ‘I don’t think so. We don’t do that here.’ There was a pause. ‘Don’t do what?’ I asked. ‘We don’t do IV Tylenol,’ she repeated. She did not offer an explanation, an alternative, or say she’d ask another provider… I felt helpless, both as a critical care nurse and as a sister.”

As if to reinforce that the patient’s sister is not welcome to participate in care discussions, the charge nurse soon comes by and suggests that the author “step out to get some rest.”

Of course we don’t know the nurse’s side of the story; perhaps she had already fielded questions from many families that night. In stark contrast to the situation depicted in this essay, when my friend Stella was recently hospitalized after anaphylaxis and cardiac arrest, I was kept well-informed by a terrific team of critical care nurses. They treated me like a colleague, offering detailed updates about my friend’s progress and always listening to my concerns. I felt respected and supported, both as a nurse and as Stella’s friend. Read the rest of this entry ?


A Lasting Gift for a Nurse’s Holiday Shifts and Lost Family Time

December 19, 2014
Illustration by Lisa Dietrich for AJN.

Illustration by Lisa Dietrich for AJN.

As we know, gifts come in many forms, and often are as valuable to the giver as to the receiver. The best ones come at times when we least expect them. Readers will find that the start of AJN‘s December Reflections essay, “A Change of Heart,” describes a frustration that may be familiar to many nurses. In this case, it’s Christmas Day, and a nurse is kept by the urgent demands of her job from spending time with family. She writes:

I’ve been a nurse for more than half of my life . . . I love my career and consider myself blessed to have found my calling. But we all experience times when our long hours and the rigorous demands of this job make us feel that we sacrifice too much of our personal and family time to care for strangers.

The author had planned to be home for Christmas dinner. But, she tells us, “we had four back-to-back emergency CABGs starting at 8 am and stretching long past my scheduled 3 pm end of shift.” The essay develops from there as the hours pass. And then we meet a patient with everything at stake. The author is not the only one in danger of missing Christmas with family, and not just this year but for all the years to come.

We are reminded again and again that nursing has its truly redeeming moments of connection, those reminders that the work you do can be the difference between life and death for a patient. So it happens in this short, engaging essay. We encourage you to click the article title above and give it a read. It’s free, and it might put the various challenges of the holidays into perspective.—Jacob Molyneux, senior editor/blog editor 


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