The Bittersweet Reality of a Nurse’s Limits in Providing End-of-Life Care

Three young patients on the same trajectory.

Image by strikers/pixabay

I have recently spent time with a few young patients all on the same sharp trajectory towards their final day of life. All had different diagnoses, and on the days I had the privilege of being their nurse, they were each at different points on that trajectory.

M. was just four days away from dying, though he and all his medical caretakers thought at that point that he had at least a few more weeks.

J. was a couple of months away from dying, and on my shift with her, she knew her situation was bad but remained hopeful for some last-ditch interventions.

R. was well-appearing outside of an unsteady gait and slight sideways drift of her eyes. She maintained levity and a hopeful innocence in the first few hours of my shift with her before I took her to her MRI scan. As I watched her MRI images appear with a clear and tragic diagnosis, I heard the physicians outside of earshot from the MRI table discuss the inoperable, inevitable turn this would take for her in the very near future. R. didn’t know yet that her budding dreams for adulthood would not come to pass, and it […]

2021-04-02T15:27:22-04:00March 31st, 2021|Nursing|1 Comment
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Putting Down Her Burden: A Patient’s Final Choice

‘goodbye, inhaler!’

Chronic illness as a Sisyphean bargain.

Sisyphus was a legendary king of ancient Greece who was condemned by the gods to eternally roll a rock up a hill, only to have it roll down again each time as it neared the top.

Many people with chronic illness today may be able to relate. Chronic illness can mean years or even decades of worsening symptoms and ever more complex medication and treatment regimens, side effects of treatments, treatments for side effects, monetary pressures, activity limitations, a sense of separateness from the legions of the merely ‘walking worried’ around us, and the subtle pervasive tension and vigilance of never quite knowing what might come next.

The ironies of advanced medicine.

The assumption, of course, is that all the effort is worth it. And it is: many of us benefit from, or know people who benefit from, drugs that keep them alive when 50 or 100 years ago they would have died long ago, or keep them able to walk, or breathe without a struggle, or sleep without excruciating nerve pain or the itching of terrible skin sores, and so on. Life has always been about compromise; these are simply new refinements of a universal equation.

2020-01-23T10:03:01-05:00January 23rd, 2020|Nursing, nursing stories, patient experience|1 Comment
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‘No Illusion of Forever’: A Mother and Nurse Makes Every Day Count

As a nurse in my early twenties, I worked with kids with cystic fibrosis (CF). At that time, we were just beginning to see some teens and young adults in our CF clinic. I was close to them in age, and friendships naturally developed. Some never even reached their twentieth year. I had never seen people my age die, and although as a nurse I knew this was possible and even likely because of their illness, every death was shocking to me.

It’s hard, then, for me to imagine how it must feel to have siblings with a terminal disease. It seems to me that losing just one brother or sister early in life would be devastating. What if you watched six die?

A childhood punctuated with loss.

In this month’s Reflections column, “No Illusion of Forever,” author and nurse Elizabeth Bruno shares her memories of her time with the brothers she lost to agammaglobulinemia. The earliest death was a brother who died at ten years of age; the longest living was her oldest brother, who lived to the age of thirty.

Part nurse, part mother—always remarkable.

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2018-12-06T14:38:20-05:00December 6th, 2018|family caregiving, Nursing|0 Comments
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The Present: What This Visiting Nurse Has to Give

Illustration by Barbara Hranilovich for AJN. Illustration by Barbara Hranilovich for AJN.

It can be daunting for a visiting nurse to enter a patient’s home, especially if the patient seems less than receptive to the nurse’s efforts. In this month’s Reflections essay, “The Present,” Pia Wolcowitz describes one of her first assignments as a visiting nurse. She’s sent to assess a woman newly diagnosed with lung cancer. Here’s an excerpt:

I rang the bell and heard a voice, but couldn’t make out what she said. I rang again. This time I heard her loud and clear. “If you wanna come in, come in! Door’s open!” Entering, I found a woman in her mid-60s sitting hunched at her kitchen table, surrounded by bottles of medication and a bowl of cereal. It was way past noon.

She had cropped blue-black hair with accents of white. She studied me a moment, then her gray eyes examined my ID. “So, you’re the nurse?”

[…]

2016-11-21T13:02:10-05:00August 10th, 2015|narratives, Nursing, nursing perspective, patient engagement, Patients|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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