Posts Tagged ‘end of life care’

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Year-End Take: A Hopeful Trend in U.S. Health Care?

December 27, 2011

Photo by James Russo, via Flickr

Less Is Sometimes More
A hopeful trend that’s gained some serious momentum this year—and may be connected to both the recession and some provisions of the Affordable Care Act—is that we’re beginning to question whether we really need quite so many tests and drugs. By ‘we’ I mean researchers, some journalists, some nurses and physicians, and of course patients. The answers aren’t always clear, and there’s plenty of room for disagreement on many such issues, but at least we’re asking the right questions more often, rather than retreating in fear and simply hurling around the word “rationing”:

Who really benefits from prostate and breast cancer screening and who is more likely to be harmed, and why? When are you too young or too old to be likely to benefit from a certain type of screening? When does aggressive care at the end of life cease to make sense? Are we confusing a risk factor with a disease, an association with causation, relative risk with absolute risk?

Does that drug you see relentlessly marketed in advertisements during breaks in the network news actually help you? Which physicians are being paid as consultants in support of various drugs, tests, or treatments, and does this compromise their objectivity? And so on. The latest example of this kind of analysis I’ve stumbled across can be found here: “Disease Creep: How We’re Fooled Into Using More Medicine Than We Need.”

The Many Faces of Nursing
So, that’s one good sign as the year heads toward its close. Another is that nurses are making their voices heard and finding new roles and new ways to use their knowledge and skills as our system begins to slowly transform itself. And they are also blogging and sharing ideas on Twitter, organizing in support of safe staffing and fair wages, getting elected to Congress and assuming major leadership positions in health care organizations, providing essential primary care as nurse practitioners, spearheading quality improvement initiatives, learning new technologies, volunteering in disaster zones, doing exciting new research, providing crucial and compassionate bedside care, advocating for patients, and much more.

This blog will probably be pretty quiet until the New Year. Be well.—JM, AJN senior editor/blog editor 

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Posted in health care reform, nursing perspective | Tagged , , , , , , | 3 Comments »

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Toward a Less Painful Death: ICD Deactivation at End of Life

October 14, 2011

By Sylvia Foley, AJN senior editor

A few years ago, in a letter to the editor of another journal, an NP described how one of her patients, a man on home hospice care, had suffered 33 shocks as he lay dying in his wife’s arms. The source of those shocks, his implantable cardioverter-defibrillator (ICD), reportedly “got so hot that it burned through his skin.” The device that had been implanted to save his life caused this man and his wife great distress in his final hours. Device deactivation at the end of life is an option; but in this case, apparently, it had never been discussed.

Stories like this one helped to inspire the research reported in this month’s CE feature, “Deactivation of ICDs at the End of Life: A Systematic Review of Clinical Practices and Provider and Patient Attitudes,” by James Russo.

Lightning by snowpeak, via Flickr

ICDs, standard treatment for people at risk for life-threatening cardiac arrhythmias, work to restore normal rhythm by delivering a high-energy, painful electrical shock. The devices are so effective that people with ICDs often die from causes other than heart disease. But once a person with an ICD begins actively dying, as in the case above, the device may cause needless pain and prolonged suffering. So it’s essential for providers and patients to talk about the possibility of deactivation, well in advance of such crises.

Russo, the coordinator of the pacemaker clinic at the Department of Veterans Affairs Medical Center in New York City, wanted to better understand why providers and patients weren’t discussing this possibility and to find ways to promote more timely discussions. Read the rest of this entry ?

Posted in audio interviews, continuing education, ethical issues, nurses, nursing research, pain control, palliative care, patient perspective | Tagged , , , , , | Leave a Comment »

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Bearing Witness: April’s ‘Art of Nursing’ and Cover Art

April 14, 2011

By Sylvia Foley, AJN senior editor

In “Palm Sunday,” the poem featured in this month’s Art of Nursing, nurse and poet Rachel Betesh evokes the prolonged anguish of those who tend the dying. A man lies “sick and stained” in a bed, leaves his food untouched, and “hardly speaks anymore.” His wife and sons lament “the sin of the too-long moment”; time does not heal, but gapes like an “open wound between sickness and dying.”

A lesser poem might have slipped into sentimentality. But Betesh’s characters are a lively, indomitable bunch. “Pop!” the man’s sons say, visiting; you can feel their vigor. His wife remembers a baked potato he’d once given her, and her response: “You gonna marry me or what?” Indeed, it’s through witnessing, hearing the family’s stories, that the nurses can offer some comfort. They cannot heal the man, but they can “pack the wound, and listen.” (Art of Nursing is always free online—just click through to the PDF file.)

Windows and Doors by Paula Giovanini-Morris

This month’s cover art, a work of embroidery by nurse and fiber artist Paula Giovanini-Morris, explores the concept of memory and illustrates its mechanisms, the neurons and synapses through which the brain registers, encodes, and retrieves events. The piece, titled “Windows and Doors,” was prompted by another kind of witnessing: the artist’s visits to her mother, who was suffering from the early stages of dementia.

AJN senior editorial coordinator Alison Bulman spoke with Giovanini-Morris, who explained, “As I watched [my mother] search for words to express herself and attempt to recall recent events, I was struck by a sadness, realizing that in a short period of time the mother I knew might be replaced by someone who had no idea who I was.” Giovanini-Morris also acknowledged that she faces the possibility that she might eventually suffer from dementia herself. For more on this artist and her work, read this month’s On the Cover.

If you’re interested in submitting your own work to Art of Nursing—we consider visual art, very short “flash” fiction, and poetry—send me an email (sylvia.foley@wolterskluwer.com) for more information.

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Posted in art and nursing, home care nursing, nurses, nursing perspective, palliative care, patient perspective, writing and nursing | Tagged , , , , | 1 Comment »

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Turkey, Sweet Potatoes, and Living Wills

November 24, 2010

By Christine Moffa, MS, RN, AJN clinical editor

by controltheweb/via Flickr

When I was growing up, my family spent Thanksgiving dinner at my grandmother’s house. She was a star in the kitchen, with cooking and baking skills beyond compare. However, while she made a chocolate cream pie to kill for, her knack for turning every conversation into a newsfeed of various neighbors’ illnesses, symptoms, and near-death experiences, if not actual deaths, stood out more. She did this so much that my brother began referring to her as Grandma Kevorkian.

It turns out that death-and-dying discussions on Thanksgiving might not be such a bad thing, according to Engage with Grace, a nonprofit organization that promotes end-of-life discussions. In 2008 they launched a blog rally timed with Thanksgiving weekend, for bloggers to get the word out about end-of-life discussions. The idea is to have the conversation when most of the family members are together, and the Thanksgiving holiday is a perfect fit. There’s a five-question tool available on the site that can be used as a conversation starter, as well as other resources.

While talking about these topics could potentially clear a room, it’s a lot worse to be sitting at a family member’s bedside in the ICU and not knowing what to choose for them because they didn’t let you know in advance.

For additional information on end-of-life discussions and options, see the AJN articles “Life-Support Interventions at the End of Life: Unintended Consequences,” by Shirley A. Scott, MS, RN, CT, and “Stopping Eating and Drinking,” by Judith K. Schwarz, PhD.

And if you raised this topic at your Thanksgiving meal this year, or at another opportune moment, write in and let us know how it went.

Happy Thanksgiving!

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Posted in legal issues, nursing perspective, palliative care, patient perspective | Tagged , , , , , , | 3 Comments »

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“I often feel anxious and nervous when I care for a dying patient . . .”

February 3, 2010

As a nursing student, I often feel anxious and nervous when I care for a dying patient. My classroom lectures have been similar to those given in medical school—death is an enemy to be conquered. We focus on treating the disease process and give very little attention to death and dying.

That’s from a letter to the editor now online in our February issue. The article the letter writer was responding to was “Stopping Eating and Drinking,” which we published back in September. The article is about an end-of-life option that is a choice available to patients who aren’t “actively dying” but who have experienced a radical diminution in their quality of life. It’s also about what a nurse legally and ethically should and should not discuss with a patient.

The notion of a nurse advising a patient on stopping eating and drinking is a potentially controversial one, but the responses we received were surprisingly unalarmed that we would publish such an article. Here’s another letter we got in response. We love to hear from our readers, whether in the old print format or here on the blog.


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Posted in ethical issues, home care nursing, palliative care | Tagged , , , , | Leave a Comment »

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Genomics, Technology, and Nursing: A “Focus on the Whole Person”

October 21, 2009
UK National DNA Infographic/ by blprnt_van, via Flickr Creative Commons

UK National DNA Infographic/ by blprnt_van, via Flickr Creative Commons

By Diana J. Mason, PhD, RN, editor-in-chief emeritus. Mason often writes for this blog about policy and research issues.

Last week, I attended the annual conference of CANS, the Council for the Advancement of Nursing Science, the “research-facilitation arm” of the American Academy of Nursing. The title of the conference was “Technology, Genetics and Beyond: Research Methodologies of the Future.” 

‘Genomics’ vs. ‘genetics.’ I’m not a genomics researcher but I found the sessions enlightening in two ways. First, I admit to struggling with the terminology (and jargon) of the field. I was reminded today that the correct term for the field is “genomics,” since “genetics” refers to the study of single genes and thus limits the focus of study mostly to rare diseases.  Genomics looks at associations among genes in the whole person—a shift in perspective that was enabled by the mapping of the human genome.

Targeted interventions. The second enlightenment came from keynote speaker and senior nurse researcher Christine Miaskowski, a dean and a professor of physiological nursing at the University of California at San Francisco School of Nursing. She noted that this shift to a focus on the whole person is what makes nurses and nursing research essential to the field.  She gave an example from her own research looking at fatigue among people with cancer. When all patients are grouped together, it looks as if there is little variation across time. But when you diagram each patient’s changes in levels of fatigue, there is actually huge variation. By looking at the genetic composition of individual patients, she’s been able  to determine who might respond best to a specific intervention that appears to have no effect when all patients are considered together. Such close examination of patient characteristics can help nurses and other health care providers to better tailor their interventions for the individual patient.

Ethical issues in research. That said, Suzanne Feetham, a nurse who has been a leader in advancing health care professionals’ understanding of genetics and genomics, talked about the ethical issues involved in conducting such research. Read the rest of this entry ?

Posted in Diana Mason, editor-in-chief emeritus, ethical issues, nursing innovations, nursing perspective, nursing research | Tagged , , , , , , , , , , , | Leave a Comment »

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‘I Can Still See the Fear in Her Eyes’: An ICU Nurse Faces a Surprising Reversal of Roles

October 9, 2009

It was a typical day in the ICU. I was wrestling with the numerous tasks I had yet to do, wondering how I would get them all done. I had three patients, I needed to draw blood gases and give my afternoon medications, and the charge nurse had just informed me that I needed to transfer one of the patients to the step-down unit-we were in a crunch for beds, and patients were waiting in the ED.

I still had a total bath and bed change to do, but the family members were in the room of the patient I needed to bathe. I had politely asked them to step out for a few minutes so I could finish my work. Now I gathered my supplies and went to the room, hoping they would take the hint.

I can’t remember her name, but I can still see her face and the fear in her eyes—and in the eyes of her family every time her cough triggered the alarm or she grimaced in obvious respiratory distress. She was on the ventilator—and much too young to be dying of breast cancer.

OctoberReflectionsSo begins the Reflections essay in the October issue of AJN. The essay is about how quickly roles can reverse themselves. It’s also about trying to strike a balance between efficiency and compassion; many nurses, we imagine, face some version of this challenge, if not so extreme, on a daily basis. Do you?

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Posted in nursing perspective, nursing shortage, palliative care, writing and nursing | Tagged , , , , , , , , , | Leave a Comment »

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