Quality of Life? Whatever the Patient Believes It Is

Illustration by Eric Collins / ecol-art.com

“What kind of life is that? That’s not how I would want to live.”

In AJN‘s September Reflections essay, “His Wonderful Life,” nurse Elizabeth Buckley interrogates her own judgmental response to a patient with a bluff, abrasive personality (he calls her ‘Nurse Ratchet during their first encounter) who requires nearly nonstop care to stay alive.

The patient has little hope of a meaningful recovery even if he survives the current hospitalization. The reader is surprised when, after a first grueling night of touch-and-go care, the author decides to take him on as her primary patient because she thinks it might be “a good learning opportunity.” (“I texted my friend who worked the day shift to sign me up; she replied that I was crazy.”)

A good life is in the eye of the beholder.

‘Philip,’ obese and with progressive dyspnea and multiple comorbidities, is sure he’ll soon be able to return to his bedbound existence at home watching old movies and chatting on Facebook; the physicians and other nurses are less hopeful. Gradually, over the course of five nights, the author’s respect and affection for the patient grows. He loves his life, however narrow it may seem to an outside observer.

2018-09-19T08:49:44-04:00September 19th, 2018|Nursing, patient experience, Patients, personal health practices|1 Comment
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Is This Child in Pain?

When the child is nonverbal.

Nurses regularly assess patients’ pain. It’s a much more difficult task when the patient is unable to articulate what they’re feeling or even where they hurt. How much more difficult is it when the patient is a nonverbal child with a complex medical history?

In this month’s AJN, Brenna Quinn and colleagues share their research on pain in these children. They define “children with medical complexity” as “those having a cognitive-chronological age mismatch, profound developmental delays, limited or no verbal abilities, and multisystem diagnoses, and who are completely dependent on others for care.” These kids tend to experience pain more frequently (often, daily or weekly), and are more likely to be hospitalized than are neurotypical children.

A ‘wide range of pain-associated behaviors.’

While it is often harder to assess pain in children than in adults, most children have a narrow range of “pain behaviors” that are easily identifiable. This isn’t true of children with medical complexity; some may even seem, from their expressions, to be laughing when they are in pain.

“More than 40 pain assessment tools have been developed for use in infants and children who cannot provide self-report. Despite the availability of these tools, the evaluation of pain in children with medical complexity remains challenging, in […]

2018-08-13T08:09:58-04:00August 13th, 2018|family caregiving, Nursing, Patients, pediatrics|0 Comments
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Holding Space for Integrative Medicine in Oncology Care

When the patient distrusts the treatment.

Explaining why chemotherapy is indicated for their treatment to a newly diagnosed cancer patient is part of a day’s work for oncology nurses and physicians. Oncology nurse navigators are no exception—I am relied upon to reinforce patient education and answer questions.

While many patients come to us with the attitude “I’ll do whatever you say, let’s fight this cancer!” others present with a deep distrust of health care. Some of their distrust is justified, a result of corporate greed, Big Pharma, and federal regulations, coupled with misunderstandings of the treatment approval process of insurance companies. Depending on the intensity of these patient conversations, it sometimes feels as if we, the oncology team, are under attack, when it is our intent to help.

Despite good health habits, a cancer diagnosis.

Held / Julianna Paradisi / colored pencil and ink on watercolor paper 2018 – adapted from image author drew during cancer treatment

I was a pediatric intensive care nurse when I was diagnosed with breast cancer. My oncology experience was limited to monitoring young patients with a high risk of tumor lysis syndrome during induction of chemotherapy. The actual chemotherapy was administered by pediatric oncology–certified nurses who knew how to keep the patients […]

2018-07-02T13:26:59-04:00July 2nd, 2018|Nursing, nursing roles, patient experience, Patients|3 Comments
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In Colorado EDs, ‘Alternative to Opioids’ Pilot Project Exceeds Goals

Ashley Copeland talks to her mother in the Swedish Medical Center ED. Copeland was treated for a severe headache with a nerve-blocking anesthetic, but no opioids. (John Daley/CPR News)

Last year, in an effort to address the state’s acute opioid abuse problem, several Colorado health care organizations—including the Colorado Emergency Nurses Association—worked together on an intervention to target patients admitted to the ED with pain. The plan? Implement a pain management program to promote alternative strategies, with a goal of decreasing opioid usage by 15% in the participating EDs.

As discussed in a June news article, the program, which was piloted in 10 hospitals and involved heavy involvement from nurses, surpassed its goal: opioid usage during the intervention period (as measured in morphine equivalent units) was 36% less than in the previous year.

The pilot project […]

2018-06-14T09:29:35-04:00June 14th, 2018|Nursing, patient experience|1 Comment
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Who’s Listening to Hospitalized Patients with Hearing Impairment?

In my early years in nursing, attention to patients’ hearing deficits was a big deal. It was assumed that we couldn’t properly care for someone if that person couldn’t hear us. Every admission assessment included an appraisal of the patient’s hearing: “Hears ticking watch eight inches from each ear,” or “hears quiet conversation at three feet without difficulty,” or “patient states deaf in right ear,” or some other specific description.

When hearing difficulties were evident, a sign was prominently posted over the head of the bed, a note in red ink was written in the Kardex (those quick-reference summaries of key points on all patients that were updated daily), and a special label was affixed to the front of the (paper) chart.

A communication impediment, often ignored.

Why don’t we do these things anymore? I see little indication that the needs of a hearing-impaired patient are a clinical priority. The deficit is not noted on the whiteboards that seem to be standard issue in patients’ rooms today. As a hospital visitor, I watch with dismay as staff fail to acknowledge acutely obvious hearing impairments.

A family member has tumor-induced hearing loss in one ear, and I explain on every admission that people need to speak up when addressing him. I ask them to make use of his intact hearing […]

2018-06-12T12:53:06-04:00June 12th, 2018|Nursing, nursing research, patient experience|1 Comment
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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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