Primary Nursing of Medically Complex Children in the ICU Increases Parental Trust

Differing views about quality of life.

Photo by Pat Smith/Pexels

As medical care has become increasingly advanced in its ability to prolong life in the face of serious, chronic illness, it has also presented complicated challenges for both the caregivers and care-receivers alike. This holds especially true when we venture into the thorny, subjective realm of “quality of life.”

Sam was a patient with serious chronic illness and severe developmental disability who had been in and out of our pediatric ICU for many years. His most recent nine-month hospitalization had been the most frightening and uncertain thus far, and the gap between the perspectives of the medical team and Sam’s mom had became more apparent. The medical team speculated whether Sam was approaching the end of his life, while his mom asked us to continue doing all we could to maximize Sam’s physical longevity.

Unspoken questions also involved our struggle to measure what exactly comprises “enough” quality of life to justify the continued offering of health care resources. It’s an inevitable struggle with scarce resources and the monetization of quality of life, particularly with a chronically ill, severely disabled child who can feel so “other” to those of us living “normal” lives.

Parents come to our unit seeking […]

2022-09-14T10:01:23-04:00September 14th, 2022|family experience, nursing roles, pediatrics|1 Comment
Read More

Giving Back: The Heart of a Nurse

The Importance of Community Engagement, Volunteering, and Why Nurses Should Get Involved

Many of us became nurses because we wanted to heal and help others, and we believed that there is no greater honor and privilege than aiding another human being.

Nurses can offer so much to communities. People trust us, and we bring a health lens to everything we do. We know that people need safe places to exercise and play, a comfortable place to call home, clean air to breathe and water to drink, grocery stores with healthful food in our neighborhoods, and human connectedness. When we join boards or volunteer with organizations, we make our communities healthier.

During the pandemic, nurses volunteered at vaccine clinics and distributed food to people in need. Nurses served as a voice of reason when community members did not know who to turn to for health advice. Nurses are the backbone of disaster-relief efforts, and we teach our neighbors how to get and stay healthy.

A sense of empowerment and fulfillment.

My experiences serving as a disaster nurse with the Red Cross have […]

2022-05-23T16:53:37-04:00May 23rd, 2022|Nursing, nursing roles|0 Comments
Read More

Psych Nursing: When the Goal Becomes ‘Simply Caring, Not Curing’

“As nurses we all care. It’s what we do. We care until our hearts hurt like an overused muscle. To find myself presiding over a void of trapped souls was not what I thought I was getting into…”

Ben Blennerhassett/ Unsplash

The above passage is from the Reflections essay, “The Suffering of Simone,” in the April issue of AJN. The author, Eileen Glover, is a psychiatric RN in New England, and her one-page essay reflects on the arc of her relationship with a patient who much of the time seems unreachable.

The essay brings to life the question of how a nurse, trained to heal or at least to soothe, can find an attitude of acceptance with patients whose psychiatric disorders defy all treatments and—most of the time—prevent meaningful contact between nurse and patient. […]

2022-04-04T10:46:45-04:00April 4th, 2022|mental illness, Nursing, nursing roles, nursing stories|0 Comments
Read More

How Should a Nurse Support Patients in Choosing a Time to Die?

Two of my six aunts died from Alzheimer disease (AD). They didn’t live nearby, so when I saw them every few months, the deterioration from the illness was evident. Both showed the same behavioral trends: some mild forgetfulness and repetitive questioning at first, then what seemed a prolonged period of incessant questions and bewilderment and anxiety over not understanding where they were or why they were there, who others were. Wandering outside at all hours, agitation and resistance to hygiene, eventually disappearing into a nonverbal, nonresponsive state.

It was painful to watch these formerly active, smart, and vibrant women decline in such a way. The most painful part was when they still understood that they were becoming confused and how frightened that made them.

Now there are alternatives available for those who don’t want to go down that road—but they are hard to come by, especially if you live in the United States.

People with dementia face particularly high hurdles.

A special feature in the March issue, “Medical Aid in Dying: What Every Nurse Needs to Know,” covers medical aid in dying and the nurse’s appropriate role in many end-of-life circumstances, including the ethically and logistically challenging situations of those with dementia who seek some agency over how […]

2022-03-28T09:59:28-04:00March 28th, 2022|Ethics, Nursing, nursing roles, patient experience|0 Comments
Read More

No Country for Old People

In my editorial in the March issue, I ask, “Where do we go from here?’” in thinking about what’s next for nursing. In particular, I wonder if we’re going to make any strides in improving the quality of how we care for older adults who need long-term care.

Disasters give rise to assessments of what went wrong.

After prior disasters like hurricanes, heat waves, and flooding, there has often been a flurry of initial concern, with many committees convened to look at the deaths that occurred.

More recently, the New York Times has reported on the fate of nursing home residents during the Covid-19 pandemic in relation to the deterioration of quality in nursing homes once they are owned by for-profit entities—as 70% of nursing homes now are. So here we are once again, this time decrying the conditions revealed by Covid-19. Will things change this time?

In answer to this question, I’m especially pleased with the article in our March issue by 22 nurse gerontology experts. They issue a call (a challenge?) for the Centers for Medicare and Medicaid Services (CMS) Coronavirus Commission for Safety and Quality in Nursing Homes to rewrite standards to finally address under-resourcing and ensure residents get the care […]

2021-03-15T15:33:48-04:00March 15th, 2021|COVID-19, nursing roles, patient safety, Patients|1 Comment
Read More

Comment ground rules

1. Please be respectful.
2. We moderate all comments.

Content disclaimer

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.
Go to Top