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

Understanding Trauma-Informed Care in Nursing Practice

When I first started my nursing career, I worked on the pediatric inpatient unit. I remember feeling sad and upset when getting report on my patients who had experienced terrible trauma in their young lives. I wondered how they would make it to and through adulthood after having survived abuse, neglect, witnessing violence, or serious illness or injury.

That was over 20 years ago, and now many of these patients are showing up in the health care system carrying their pain and bad memories with them. They may be the adult we meet with a substance or alcohol use issue, chronic pain, or help-rejecting behaviors. They might be the patient whom colleagues have labeled “difficult.” Or they might be chronically late for appointments or fail to show up at all. Frequently, people with a history of trauma can be further traumatized by an interaction with an uncaring health care system and choose to avoid getting the care they need. They may be experiencing symptoms of PTSD along with their other reasons for seeking health care.

Practicing trauma-informed-care (TIC) can help address this problem. June is PTSD awareness month, and we’d like to highlight our April CE feature, “Trauma-Informed Care in Nursing Practice.” Authors Elizabeth Dowdell and Patricia Speck point […]

2022-06-15T14:09:56-04:00June 9th, 2022|Nursing, patient engagement, Patients|0 Comments
Read More

When a Person with Type 1 Diabetes Goes to the Hospital

Photo by Susan Q Yin on Unsplash

I have always done everything I can to avoid hospitalization. Aside from concern about potential surprise bills, it’s a control thing: I’ve simply been afraid of turning over care of my blood glucose levels to anyone else. I’ve had numerous outpatient surgeries and procedures, but for the nearly three decades since I was diagnosed with type 1 diabetes in my mid-20s, I never spent a night in a hospital.

In retrospect, the one time I should have accepted hospital admission was immediately following the shock of the diagnosis, which followed close on several months of unexplained weight loss, increasingly unbearable thirst, blurring vision, and general disorientation. My blood glucose level had been off the charts, plus I needed time to reckon with the loss of freedom for my always more or less healthy and fit body and to begin to learn to balance insulin shots, glucose levels, food intake, physical activity, and much else. But I was in denial (with predictable consequences) for quite some time afterward, and had also turned down the cost of health insurance when entering graduate school.

In the hospital.

In any case, one frigid, iced-over night this early January, I […]

2022-06-07T09:32:16-04:00June 7th, 2022|Nursing, patient experience, Patients|2 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

The Particular Pain and Challenge of Educating Patients During a Worldwide Pandemic

Working in a rural community access hospital during the pandemic has been a struggle. Here as in many areas of the U.S., many in the surrounding community have not accepted the the existence of a virus like Covid-19. Against the backdrop of this widespread disbelief in the reality of the virus, the “government-mandated” vaccine was a final straw for many.

Many of these patients wholeheartedly believe that the vaccine is the “mark of the beast” mentioned in the Book of Revelation and that this is the beginning of the end of the world, with getting the vaccine understood as an expression of loyalty to Satan.

This belief is shared by various religious groups in other areas of our country. Many patients in our community also believe the vaccine is made with stem cells and fetal tissue and includes microchips. There are widely circulated rumors of tracking devices in the vaccine itself.

How do we as nurses and advanced practice registered nurses (APRNs) educate patients on the science of vaccinations in the face of the anger and passion we experience daily from a suspicious community?

The many other strains on nurses.

It hasn’t helped that nurses and APRNs alike have had to deal with more than they bargained for on many levels in […]

2022-02-24T14:38:16-05:00February 24th, 2022|Nursing, patient engagement, Public health|0 Comments
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