Talking About Death: Not Nice, But Necessary

Photo by Eliza Peyton, via Flickr

By Amy M. Collins, editor

Our recent blog post on “death panels” triggered a memory of my own first real experience with the death of a loved one. It was a little over 10 years ago. I was living overseas when my mother called to tell me my grandfather had liver cancer and had been given maybe a year to live.

The physician had given my family three choices: the aggressive choice, chemo; a less aggressive treatment with an experimental drug that had moderate success; or to let him live out the rest of his numbered days. We chose the middle ground.

At the time I worked in medical publishing and thought I knew everything. Over the weeks that followed I would call home to get progress reports, usually putting my two cents in about what my family should be asking the physician. Finally, when things seemed to be getting worse, I flew home to help.

Nothing could have prepared me for the emaciated man I found sitting up in bed when I went to my grandparents’ house to visit. I hardly recognized my grandfather. It hadn’t been that long, but the cancer had already ravaged him. Despite this, he was cheerful and had high hopes. He didn’t seem […]

2016-11-21T13:09:37-05:00July 25th, 2012|patient engagement, Public health|4 Comments
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Forward or Back? Some Personal Notes on Why the Affordable Care Act Matters

By Jacob Molyneux, senior editor/blog editor

So today the U.S. Supreme Court did something a little surprising in upholding the individual mandate provision in the Affordable Care Act (here’s the text of the full decision). It was the right thing to do, given judicial precedent, but it still comes as a surprise that Chief Justice Roberts was the swing vote rather than Kennedy, or that they actually did this. Justice Roberts must have looked to his conscience and seen how history would judge him. Or it’s nice to think so.

This is good for many reasons: those under 26 on their parents’ plans can now stay there. A bunch of money earmarked for nurse education will not suddenly disappear. Health care exchanges holding insurance companies to minimum standards will be implemented. Accountable care organizations can continue to experiment in an effort to replace the disastrously expensive fee-for-service model with one tied more closely to outcomes. And a great deal more.

But now we should ask ourselves: Do we go forward or back? This is the real question when it comes to the American health care system. Going back isn’t an option, though many are sure to go on pretending it is (the Republicans will make repealing the Affordable Care Act a centerpiece […]

2016-11-21T13:09:47-05:00June 28th, 2012|health care policy, nursing perspective, Patients|9 Comments
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The Kiss: Hope in the ICU

By Marcy Phipps, RN, a regular contributor to this blog. Her essay, “The Love Song of Frank,” was published in the May issue of AJN.

by limegreeen9, via flickr creative commons

I always look forward to interdisciplinary rounds. I’ve worked with most of the team members for years and enjoy the differing perspectives and collaboration. Today is no exception; I know my patient very well, as he’s been in the ICU for months. As the interdisciplinary team moves through the ICU like a small mingling mob, pausing at each room for a brief nursing report and lingering for discussion, I stand in anticipation, ready to present my patient’s case.

My report, though, is politely cut short by the medical director.

“What’s changed?” he wants to know.

And I feel pressed to produce some crumb of improvement. 

“Well…” I say. “He kisses his wife. His GCS* remains eight, but he kisses his wife.”

A few people smile, and I hear a few chuckles.

“It’s a reflex!” I hear someone say as they move away.

I know, of course, how little the kisses mean from a medical standpoint. His initial injury was neurologic, and his neuro status is quite compromised, but stable. His cardiovascular, gastrointestinal, and genitourinary systems are stable, as well. It’s respiratory insufficiency that keeps him in the unit. Puckering his lips in response to his wife leaning towards him is not significant […]

2016-11-21T13:09:58-05:00June 4th, 2012|Nursing, nursing perspective, nursing stories, Patients|4 Comments
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The ‘Inexhaustible Well’: Notes from a Trauma Nurse on Mortality

By Marcy Phipps, RN, a regular contributor to this blog. Her essay, “The Love Song of Frank,” will be published in the May issue of AJN.

Years ago, long before I was a nurse, I read The Sheltering Sky, by Paul Bowles. He speaks of the tendency of people to take life for granted, and says that in the unpredictability of death there lies a presumption that everything is limitless:

“Because we don’t know when we will die, we get to think of life as an inexhaustible well. Yet everything happens only a certain number of times, and a very small number really. How many more times will you remember a certain afternoon of your childhood, an afternoon that is so deeply a part of your being that you can’t even conceive of your life without it? Perhaps four, five times more, perhaps not even that. How many more times will you watch the full moon rise? Perhaps 20. And yet it all seems limitless.” 

Lately, especially at work, that quote has edged forward and lingered with me. The ICU I work in is primarily devoted to trauma, but there’s been a recent shift in patient demographics. Last week I took care of only one trauma patient—an athlete who’d had […]

2016-11-21T13:10:16-05:00April 19th, 2012|Nursing, Patients|7 Comments
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“Let Patients Help”: Nurses and e-Patients

Joy Jacobson is a health care journalist and the poet-in-residence at the Center for Health, Media, and Policy at Hunter College, where she teaches writing to nursing students.

In the March issue of AJN, a letter writer responds critically to my news report, “Leveling the Research Field Through Social Media,” published last October. My report summarizes some recent trends in medical research, including patients using Facebook and other social networking sites to push for the funding of research into treatments that the science may not support. I go on to discuss PatientsLikeMe, which describes itself as “a health data-sharing platform” designed to “transform the way patients manage their own conditions.”

The letter writer objects to the idea of patients sharing their own data online. Can vulnerable, mentally ill patients, she asks, consent to participate in online research? Is enough being done to safeguard them? “I suggest we disseminate information to nurses that helps them steer patients away from Web sites such as PatientsLikeMe,” she concludes, “until programs and processes are in place to better protect the public we’ve pledged to serve.”

Several PatientsLikeMe researchers responded to this nurse’s points; a synopsis of their responses was included along with the reader’s letter in the March issue. “What we are doing is new and as such should be scrutinized frequently and rigorously by peers to ensure we are meeting the ethical standards one would expect for our patients,” they write. “We believe our […]

2016-11-21T13:10:25-05:00March 30th, 2012|digital health, healthcare social media, patient engagement, patient experience|3 Comments
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Views expressed on the blog are solely those of the authors or persons quoted. They do not necessarily reflect AJN’s views or those of Wolters Kluwer Health/Lippincott Williams and Wilkins.
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