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If She Yells ‘Help Me’ – Poster Therapy to Convey the Needs, Identity of an Ailing Parent

July 23, 2014

Joan Melton, MSN, lives in Indiana.

Photo by Ann Gordon, via Flickr

Photo by Ann Gordon, via Flickr

I am a geriatric nurse practitioner and have also been the daughter to an ill, aging parent. I felt well trained for my professional role but struggled with the latter.

I joked that, despite my logical understanding of what was going on with my mother, it could be hard to accept her physical and functional changes, which sometimes seemed to fly in the face of logic. There were days Mom’s hospice nurses spent more time with me than with my mother. They’d sit and allow me to vent my frustration at watching my mother slowly leave me, at feeling overwhelmed and “losing my cool” with her, at not being able to practice the advice I’d so readily handed out to so many other families over the years, not being able to “fix it” and successfully comfort all of Mom’s fears and ailments 24 hours a day, seven days a week.

Yes, I know how unrealistic that last statement sounds. Thank goodness for hospice nurses, who reminded me that I was “the daughter” and did not need to be “the nurse practitioner.” They reminded me that as the daughter I had amazing insight no one else had.

So, when Mom spent a week in the nursing home to give my family some long-overdue respite time, her hospice nurses suggested I share all of my rich, personal, daughterly insight.

Their idea was brilliant. It made me feel useful and allowed me to feel less guilty about taking Mom to the nursing home. Most of all, it reminded me of who my Mom really was behind the mask of her dementia.

Mom’s health issues had begun with chronic, recurrent atrial fibrillation. Placed on Coumadin for stroke prevention, she fell, hit her head, and had a cerebral bleed. She was taken off Coumadin, and during her recovery had another episode of atrial fibrillation, this time suffering a thrombotic stroke that left her with memory problems and expressive aphasia. In addition, Mom was blind from the effects of glaucoma and macular degeneration.

In summary, Mom was unable to walk by herself, couldn’t find words to say what she wanted to say, and could only see shadows. Naturally, she became fearful and frustrated as her world closed in on her. Confusion and anxiety were side effects of her condition(s). At times, she was so anxious that she became short of breath. Her oxygen levels would drop, and her confusion would get worse. In addition, her appetite changed. She lost weight, and like many elderly patients, she had recurrent urinary tract infections from not drinking enough fluids.

Two posters. Before it was time to take Mom to the nursing home, the hospice nurses suggested I make two posters to display in her room. They suggested that on the first I list who my Mom was behind the mask of her dementia. What did Mom love to do before she became ill? They also suggested I put photographs of Mom on the poster to show what she’d been like before she became so frail.

On the second poster they suggested I write things to help the staff at the nursing home take better care of Mom, tips that only I knew from my past experiences as her caregiver and her daughter. Seeing these things written on a poster and displayed in her room would serve as a reminder for the staff, and would provide an easy way to share important information about her to all the different staff members who would be involved with Mom’s care.

I took the nurses’ excellent advice and began making the two posters. The entire family helped. Mom’s posters were the talk of the nursing home. People would come into her room just to read them. Here are a few examples of what we wrote:

Poster #1
Mom loves flowers, especially zinnias.
Mom’s was married to Dad (name) for 51 years. Dad went to heaven eight years ago.
Mom had five children (we listed their names). Mom calls out for her oldest son.
He and his wife took care of Mom at home.
Mom loves to waltz and old-time country music.
Mom loves to talk to her sister (name) on the phone every day. Mom is extremely close to her sister. Their mother died when they were only four and six years old.
Mom loves cooking for her family. She makes the best fried chicken.
She loves listening to the Catholic mass on TV or praying the rosary.
Mom loves going to the country, raising cows and bottle feeding the baby calves. She would give the cows names like pets.
Mom loves having her hair fixed and putting on make-up and looking nice every day. Read the rest of this entry »

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Tragic Plane Crash, Truvada Concerns, Changing Infection Rates: AIDS/HIV Issues in the News

July 21, 2014
Truvada

Truvada / via Wikimedia Commons

By Jacob Molyneux, AJN senior editor

There have been a number of recent high-profile news stories as well as some notable new research related to HIV/AIDS and its treatment and prevention.

First, AJN would like to add its voice to those expressing heartfelt regret at the deaths of a number of prominent and widely respected HIV advocates and researchers in the Malaysia Airlines jet that appears to have been shot down over Ukraine last week.

The Truvada controversy. Those who who died on the plane had been heading to an international conference in Melbourne, Australia, where one of the hot topics under discussion would be the pros and cons of the continuing expansion of the use of the antiretroviral drug Truvada beyond the treatment of existing HIV infection to long-term prophylactic use by the uninfected.

The topic is particularly timely here in New York where Governor Cuomo last week announced that New York State would make Truvada a centerpiece of its HIV-prevention strategy. The drug, taken every day, is more than 90% effective in preventing infection, but, as an NPR story recently described, a number of experts have raised concerns about widespread long-term use of Truvada for HIV prevention, noting

  • serious potential side effects of Truvada.
  • the $1,300/a month cost of the drug.
  • the reduction in the use of condoms by some of those taking Truvada, which could lead to higher rates of other sexually transmitted diseases.

Read the rest of this entry »

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The Ethics of a Nurse’s Refusal to Force-Feed Guantanamo Hunger-Strikers

July 18, 2014

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.

Nasal tubes, gravity feeding bags, and the liquid nutrient Ensure used in Guantanamo force-feeding/ image via Wikimedia Commons

Nasal tubes, gravity feeding bags, and the liquid nutrient Ensure used in Guantanamo force-feeding/ image via Wikimedia Commons

The Miami Herald reported this week that a U.S. Navy nurse and officer refused to take part in force-feeding hunger-striking detainees at Guantanamo Bay.

There’s much we still don’t know about this story, but the force-feeding of prisoners at Guantanamo has been a contentious issue for some time. The practice has been compared by some to torture, and ethicists in the medical literature have urged the physicians involved to refuse to participate, while the U.S. government and President Barack Obama defend the practice on humanitarian grounds of preventing the deaths of the detainees.

Whether or not one feels that nurse participation in the force-feeding is justified, this officer, whose identity has not been released, appears to deserve the profession’s praise for taking a moral stand in an extraordinarily difficult circumstance. All nurses have the right of conscientious objection, of refusing to participate in practices that they find morally objectionable—assisting in abortions is another practice that some nurses have opted out of on moral grounds—and officers in the U.S. armed services are bound to consider the legality and morality of orders they carry out.

Much is at stake for this nurse. Not only do officers risk their careers when refusing an order on moral grounds, but they must breach a sacred principle of effective military operation: obedience to the chain of command except by an officer in extraordinary circumstances.

Further, the officer deciding to refuse an order must make this determination alone and accept severe consequences if the further consideration of the higher chain of command, the courts, or history does not support her or his assessment. Read the rest of this entry »

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Getting Patients Involved in Care Redesign: What the Research Says

July 16, 2014

By Sylvia Foley, AJN senior editor

“I think the whole thing is we’re trying to im­prove care. It’s all about [patients] anyways. So if we’re gonna make changes that impact them I think we have to get them involved.” —study participant

Although there is considerable support for increasing patient involvement in health care, it’s not clear how best to achieve this. And few researchers have specifically investigated the views of patients and providers on patient engagement. In this month’s CE–Original Research feature, “The Perceptions of Health Care Team Members About Engaging Patients in Care Redesign,” Melanie Lavoie-Tremblay and colleagues describe findings from their recent study. Here’s a brief overview.

Objective: This study sought to explore the perceptions of health care workers about engaging patients as partners on care redesign teams under a program called Transforming Care at the Bedside (TCAB), and to examine the facilitating factors, barriers, and effects of such engagement.
Design: This descriptive, qualitative study collected data through focus groups and individual interviews. Participants included health care providers and managers from five units at three hospitals in a university-affiliated health care center in Canada.
Methods: A total of nine focus groups and 13 individual interviews were conducted in April 2012, 18 months after the TCAB program began in September 2010. Content analysis was used to analyze the quali­tative data.
Findings: Health care providers and managers benefited from engaging patients in the decision-making process because the patients brought a new point of view. Involving the patients exposed team members to valuable information that they hadn’t previously thought about during decision making.
Conclusion: Health care teams stand to benefit from engaging patients in the change process. Patients contribute a different point of view, and this helps to ensure that the changes proposed and implemented address their needs.

Noting the importance of mindset, the authors concluded that “perhaps the most important facilitating factor in including pa­tients on care redesign teams is for all those involved to believe that their participation is crucial to im­proving the design and delivery of services.”

For more details, read the article, which is free online. What’s your take on patient engagement?

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Flight Nursing Notes – The Feel of a Homecoming

July 14, 2014

Observations of an experienced ICU nurse and long-time AJN blogger who recently made the transition to flight nursing.

clouds-photo-from-airplaneMarcy Phipps, BSN, RN, CCRN, ATCN, TNCC, is an occasional contributor to this blog. Some details have been changed to protect patient privacy.

“We’ve been married for 58 years,” my patient’s wife says. “Fifty-eight years…”

She turns her attention from me and gazes out the window of the plane.

We are on a medevac flight, 35,000 feet over the Pacific en route to an urban, American hospital near “home.” Her husband is being transferred to receive aggressive care for a grave illness.

We collected him hours earlier from a hospital on a foreign island. Local paramedics picked my partner and me up from the barren, windy tarmac. As we sped to the hospital in the back of an ambulance with a cracked windshield, the driver turned to warn us that we were going to “the worst hospital in the city.”

“It’s open-air,” he told us, as he dodged mopeds and swerved through narrow, crowded streets.

This didn’t surprise me. I’d been forewarned that hospital conditions on many of these remote islands could be shocking when compared to American standards. It was something I’d been curious to see firsthand.

Yet when we picked our patient up, we found him in a small and clean room in an intensive care unit. Despite the paramedic’s prediction and the visibly run-down hospital, he appeared well cared for and attended to. His wife told me later that she believed her constant presence at his bedside had guaranteed his good care.

And now it’s two in the morning and I sit in a private jet with the flight medic, tending our patient, who is remarkably stable and tolerating the flight with ease. We are also tending to his wife, albeit in less obvious ways. He’s secured to a stretcher; she sits in a bucket seat at his feet, nervously watching his chest rise and fall with the ventilator-delivered breaths. Each time I assess him or check his vital signs she looks at me anxiously. Read the rest of this entry »

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Preparing Patients to Care for Themselves After Discharge

July 11, 2014

Here’s your prescription. Don’t drive if you take it. Call your surgeon if you have a temperature or are worried about anything. See your doctor in two weeks. Want a flu shot? If you need a wheelchair to take you to the door, I’ll call. If not, you can go. Take care of yourself. You’ll do great!”

These were my nurse’s parting words before I left the hospital after a weeklong stay and surgery to remove my stomach and the tumor in it. I said goodbye. Then I panicked. What did I need to know about my new digestive system? What about that big scar? Until then I’d been closely monitored and checked on every 90 minutes.

Now it was 8:45 in the morning. My husband hadn’t arrived. I was supposed to move on.

Jessie Gruman

Jessie Gruman

That’s the start of our July Viewpoint column, “Preparing Patients to Care for Themselves,” written by Jessie Gruman, president and founder of the the Center for Advancing Health, a nonpartisan policy institute that’s played an important role in the growing patient engagement movement.

In this essay and elsewhere, Gruman draws on her own experience as a cancer patient as well as her public health expertise to bring insight and clarity to the often nebulous concept of patient engagement.

With greater success in treating certain types of cancer, and more and more people living with one or more chronic illness, patients increasingly need the tools and confidence to become partners in their own care. Such phrases, used too often, can becomes clichés that we no longer really hear—but the stakes are very high for both patients and institutions. Read the rest of this entry »

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VA Nursing Leadership Silent on Veterans’ Wait Times Scandal

July 9, 2014

By Gail M. Pfeifer, MA, RN, AJN news director

Audie L. Murphy Veterans Administration Hospital in San Antonio, TX / Wikimedia Commons

Audie L. Murphy Veterans Administration Hospital in San Antonio, TX / Wikimedia Commons

I’ve been trying to arrange an interview with a nurse in a leadership role at the VA’s Office of Nursing Services (ONS) for over a month now, with little success.

Granted, an excessive wait time for an interview pales in comparison with how long many veterans have had to wait for health care. Still, this has given me a tiny taste of what it must be like to enroll with the Veterans Health Administration for services: you can contact them, but you have to wait a really long time to even schedule a first appointment.

A substantive interview with AJN might have been a golden opportunity for the ONS to get out ahead of the story that has plagued the VA since the Phoenix scandal about lengthy waiting times at the VA broke in early May. (I did finally get a response of sorts. More on that below.)

To recap: The allegations in May that the Phoenix VA system had manipulated data about appointment wait times to hide the fact that veterans were not getting timely appointments galvanized public and Congressional attention.

But such problems in the VA health care system are not new, as a May 18th interim report by the VA Office of Inspector General makes clear, noting that since 2005 it has issued 18 reports on a local and national level identifying scheduling problems leading to long wait times and negative effects on veterans’ care. In 2010, the VA even established an Office of Specialty Care Transformation in the Office of Specialty Care Services to address veterans receiving “fragmented care and services, long wait times, and unaccepted [sic] delays,” according to that agency’s Website.

To be fair, it was widely reported this past week that long wait times have become “the norm” across the American health care system. Still, thousands of veterans are likely to have suffered, even in some cases died, because of the protracted wait times at Veterans Health Administration facilities.  Read the rest of this entry »

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