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 […]

2016-11-21T13:09:37-05:00July 25th, 2012|patient engagement, Public health|4 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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Losses: In Search of an Honest Prognosis

By Marcy Phipps, RN, a regular contributor to this blog. Her essay, “The Soul on the Head of a Pin,” was published in the May 2010 issue of AJN.

Several years ago I took care of a lady who’d suffered a small cerebral hemorrhage after falling and hitting her head. She was in the ICU for several days. Her husband stayed at her side constantly, and he became a part of a never-ending loop in which she would wake up startled to be in a hospital, and then notice her husband and ask him where she was and what had happened.  He’d hold her hand and gently relay the events of her injury, after which she’d react with mild surprise, every single time. Then she’d close her eyes and doze until she woke up to reinitiate the same conversation.

Her husband, after days of patiently playing his role in this repetitive scene, was clearly wearing down. He waited anxiously for the neurosurgeon, expecting explanations and hoping for reassurance.

When the neurosurgeon rounded later that day I heard him speak at great length about the details of her injury and the treatment plan. He ultimately advised that, although he thought she’d recover well, only time would tell.

Her husband wanted more […]

2016-11-21T13:10:27-05:00March 19th, 2012|patient engagement|1 Comment
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The Elusive Strict Diet

By Amy M. Collins, associate editor

Several days ago, we linked on our Facebook page to an abstract of a JAMA article that found that women hospitalized for myocardial infarction were more likely than men to present without chest pain. A few days later, my 59-year-old mother was told by her general practitioner that her ECG had shown an electric “blip” that could be due to scarring from an unnoticed heart attack. My mother—always too lax about these things (unlike her hypochondriac daughter)—calmly told me she always has random chest pains and it could have happened at any time.

A visit to the cardiologist a few days later eased our fears. She hadn’t had a heart attack, but was diagnosed with right bundle branch block and has to undergo further testing. With high C-reactive protein levels, elevated cholesterol, and a history of heart disease in the family, one can’t be too careful. A stress test and cardiac ultrasound have been ordered.

In discussing her cholesterol level, which had increased since my mother’s last wellness exam, the cardiologist suggested she start taking statins. Not keen on medication, and worried by recent reports of adverse effects from these drugs, she said she’d rather only start with that if there were no other options. His suggestion […]

2016-11-21T13:10:30-05:00March 14th, 2012|patient engagement, personal health practices, Public health|4 Comments
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‘Like an Origami Swan’ – Remembering Tea with Miss Elsie

“Hello,” I said. “I’m the nurse. I’m here to see Miss Elsie.”

“I know,” he answered, grabbing my wrist and pulling me inside.

The heat of the cramped house slammed into my face. The windows were closed and the shades pulled down. Without a word, my little escort guided me down a narrow hallway into a room not much bigger than a closet, then deftly released my wrist and slipped out of sight.

So starts “Tea With Miss Elsie,” by Claire Schuster, MSN, RN, APRN-BC, CWS, associate professor emerita in the nursing program at Berea College, Berea, Kentucky. The Reflections essay in the March issue of AJN is a subtle, quiet portrait of a moment and the gesture at its heart, and it’s well worth a read. (For the most appealing version, click through to the PDF version link in the upper right of the landing page.)—JM, senior editor  

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2016-11-21T13:10:32-05:00March 8th, 2012|Nursing, patient engagement|0 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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