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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A Sense of Meaninglessness and Disconnectedness: Addressing Spiritual Distress Among Cancer Survivors

“I lost a critical year of my life, and now I can’t move forward. I feel stuck. My life is passing me by, and I don’t know what I’m supposed to do anymore.”

This quote is from a composite case example that focuses on the spiritual distress experienced by some cancer survivors. Treatment may be over with, and the prognosis may be excellent. All signs may point to the probability of a cancer-free future. But after confronting a potentially life-threatening diagnosis, many survivors struggle with a sense of meaninglessness or disconnectedness.

In “Assessing and Managing Spiritual Distress in Cancer Survivorship” in the January issue of AJN, Timiya Nolan and colleagues explore the concept of spiritual distress and its impact on a person’s quality of life.

A topic that often goes unaddressed.

The authors emphasize the need for clinicians to actively screen for this problem and learn how to initiate conversations with patients. Clinicians are often reluctant to raise the issue of spiritual well-being, and thus wait for survivors to voice any spiritual concerns. While this approach is effective in some cases, if the conversation never occurs, the survivor’s spiritual needs may be unmet. […]

2020-01-16T10:15:37-05:00January 16th, 2020|Nursing, patient experience, Patients|0 Comments
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Morphine in Hospice Care: Why Family Members May Resist Its Use

Underlying his concerns was a strong sense of moral responsibility. He was his mother’s protector. He was her voice. He had a duty to keep her safe…

Morphine’s essential place in hospice care.

When I began work in a hospice, I quickly came to see morphine as a wonder drug. It was used so much more effectively in palliative care than with the med-surg patients I had cared for in the hospital!

Morphine can be given via multiple routes, it’s easy to titrate, its side effects are well-known and therefore easy to manage, and it can bring dramatic pain relief as well as markedly improved breathing.

It was common for us to admit patients to hospice whose pain had never been controlled, and they were often dumbfounded at how easily their pain could be managed. The proper medical use of morphine was literally life changing for them.

Addressing family members’ concerns.

As a result of my hospice experience, I’ve always been a big believer in patient and family education to debunk myths and highlight the optimal uses of this drug. And yet education alone isn’t always what family members need when morphine is prescribed for their loved ones. Especially when the patient is at home and it’s a family member, not a nurse, managing […]

2019-11-12T15:36:45-05:00August 21st, 2019|family experience, patient experience|3 Comments
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A Health Care Proxy and an Act of Moral Imagination

“What would Joanna have wanted?” the ICU fellow (Dr. Smith) asked Sam, Joanna’s nephew and health care proxy, for the second time this week. Sam considered the question, furrowed his brow, and said, “I still don’t know, doc.”

The human costs of indecision.

Uncertainty can at times be better than false certainty. This may even be so, up to a point, when a loved one is on life-support and subject to invasive and painful procedures. It takes time to absorb the reality of a situation.

But any nurse can tell you that, at some point, indecision becomes a decision in itself, one that can lead to many unwished-for consequences.

Seemingly unanswerable questions.It

The quotation at the start of this post is from this month’s Reflections essay, “What Joanna Would Have Wanted” (free until July 15). The story, by nurse Jennifer Chicca, MS, RN, evokes the overwhelming sense of responsibility faced by a thoughtful young man in the role of health care proxy to a beloved aunt.

How is possible to be sure what someone would want, or not want, when their end-of-life wishes have not been clearly spelled out ahead of time? […]

2019-07-01T15:50:47-04:00July 1st, 2019|Nursing, nursing stories, patient experience|1 Comment
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Does Everything Happen for a Reason? One Oncology Nurse’s Perspective

Does Nature Argue Fate? The Acorn Contains The Tree/
charcoal, pastel, and ink on paper/ Julianna Paradisi 2019

The human need to find meaning.

“Everything happens for a reason” is a saying I hear a lot in my nursing practice, from patients and coworkers alike.

The need to find meaning in the events of our lives, good or bad, appears to be a distinctively human trait. Ancient Greeks believed Clotho, one of the Three Fates, spun the lives of humans. In medieval times, Anglo-Saxons may have believed in wyrd, a concept similar to fate in our modern language. Elsewhere, the idea of karma teaches a cause and effect perspective on this life, and on future lives. These are only a few examples.

Learning to ask ‘why’ as a pediatric ICU nurse.

I began questioning if everything happens for a reason as a pediatric intensive care nurse at the beginning of my career. Asking “why?” is a natural response to watching a child suffer. Why is a baby born without a functional left ventricle? Why does an infant contract leukemia or a brain tumor?

Certainly genetics or environmental factors cause some cases. Regardless, it’s difficult to […]

2019-06-27T09:53:05-04:00June 27th, 2019|Nursing, nursing stories, patient experience, 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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