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.

The Inner Stretch of Nursing

There is a level of discomfort nurses are pushed to that goes beyond tight staffing, busy 12-hour shifts, and mental tracking of our patient’s disease process. It is the inner stretch of our emotional, relational, and spiritual muscles. We are pushed to wrestle with questions and issues beyond what we find comfortable, and then we must learn to live with a certain unresolved level of discomfort. We can’t go back to a perhaps safe naïveté about life as we knew it before we saw how indiscriminate some forms of suffering and death could be. Our own theological wonderings come to light, and our capacity for vulnerability and intimacy is tested when certain patients find a way past the self-protective walls we put up. Sometimes, all the big questions of life loom over us in the course of one 12-hour shift.

We are stretched in how we think about quality of life.

My everyday thoughts about quality of life usually revolve around the quality of my relationships, how much free time I had to enjoy my hobbies, what delicious food or special coffee treat I might enjoy today, how much traffic I encountered, and whether my kids seem to have everything they need. I’ve had my share of personal trials and tribulation, but overall I live a life […]

2018-01-18T10:06:13-05:00July 14th, 2017|Nursing|4 Comments

Dialysis Patients’ Very Different Life or Death Choices

Illustration by Barbara Hranilovich. All rights reserved. Illustration by Barbara Hranilovich. All rights reserved.

This month’s Reflections essay is called “Sitting with Death.” The subtitle provides a little context: A social worker on a dialysis unit bears witness to patients’ life or death choices. Despite the sad stories the author tells, this remembrance doesn’t leave a reader feeling disheartened.

Retired social worker Linda Converse writes that starting work at a dialysis center was at first daunting. How could she talk to patients about such an ultimate choice as whether or not to give up dialysis?

But over time she began to understand that there was usually no right answer. For each person, there was a different personal algorithm that guided the choice, one based on such factors as quality of life, obligations to loved ones, values, and much else. Writes Converse:

I’ll never forget some of the patients who chose to stop dialysis, nor will I forget those who chose to hold on for as long as possible. There was no consistent logic when it came to an individual’s choice. What one person considered an impossible quality of life, another wouldn’t.

[…]

Patients Change Us: A Formative Nursing Experience

From boliston, via Flickr From boliston, via Flickr

Many years ago, I was given the greatest gift by a patient who had no idea he would change my life and define my professional outlook as a nurse. While not every nurse will be fortunate enough to have such an explicit experience of the effect of the care they provide so early in their career, I believe that each patient you come in contact with is changing your life as much as you are changing theirs.

Quantity of Care vs. Quality of Care

Nursing has evolved into a highly technical profession grounded in scientific evidence, a profession that works to improve patient outcomes and shorten hospital stays. Research and technology support this work in innumerable ways.

But while nurses must be technical experts, drug experts, and efficiency experts, they must also do their best to alleviate the suffering of those in their charge. These many concurrent demands can result in high burnout rates among nurses as well as fragmented care for patients.

The quantity of care today’s nurse provides must go hand in hand with the quality of care. My own definition of quality care is focusing on patients as more than just a set of signs, symptoms, numbers, and processes in need of monitoring and adjustment. Recognizing […]

The Dangers of Loneliness: Findings from a Study among Appalachian Elders

By Sylvia Foley, AJN senior editor

Arrow and mountains by taberandrew, via Flickr Arrow and mountains by taberandrew, via Flickr

Writing for AJN in 1955, Hildegard Peplau described the complexities of loneliness, observing that “often loneliness is not felt; instead the person has a feeling of unexplained dread, of desperation, or extreme restlessness.”  Fast-forward to 2009: nurse researchers Laurie Theeke and Jennifer Mallow wanted to better understand the health implications of loneliness, and decided to conduct a study. This month’s original research CE, “Loneliness and Quality of Life in Chronically Ill Rural Older Adults,” reports on a data analysis of their findings.

One of the most striking findings was that 97% of the sample reported significant loneliness, an extremely high prevalence rate. Here’s a quick overview of the study:

Background: Loneliness is a contributing factor to various health problems in older adults, including complex chronic illness, functional decline, and increased risk of mortality.

Objectives: A pilot study was conducted to learn more about the prevalence of loneliness in rural older adults with chronic illness and how it affects their quality of life. The purposes of the data analysis reported here were twofold: to describe loneliness, chronic illness diagnoses, chronic illness control measures, prescription medication […]

2017-07-27T14:50:14-04:00September 4th, 2013|nursing research|2 Comments
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