Honoring the Personhood of Brain-Dead Patients: A Delicate Approach

A dandelion alone in a field suggests the fragility of life. Photo by RIDVAN AYRIK/ Pexels

In the past month, we had a couple of patients in our pediatric ICU who had suffered tragic neurological injuries and were declared medically brain-dead. In the state of California as in most states, a pronouncement of brain death is equal to a legal pronouncement of death, and the medical team then possesses legal permission to remove mechanical support from the physical body that has remained under intensive care.

In both of these cases in our ICU, the parents struggled to accept the terminal implications of brain death and pushed back to varying degrees for more time to see if their children might still somehow find a way to recover. In these types of cases, the actual moment-by-moment practice of bedside nursing care becomes complicated. How do we honor the personhood of the patient as we provide intensive care for the body prior to removing mechanical support, and at the same time gently help the parents accept that their child has medically died?

The potential for misunderstanding nursing care

The interactions nurses have with family members as we care for their brain-dead child present many opportunities […]

2023-06-21T13:06:54-04:00June 21st, 2023|end of life, Ethics, family experience, Nursing|1 Comment
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Pediatric Mental Health Tops ECRI’s 2023 Top 10 Patient Safety Concerns

Photo by Eric Ward on Unsplash

Each year, the ECRI Institute creates a list of top 10 patient safety concerns along with actionable recommendations for institutions to reduce these risks.

Some years, the list includes repeat offenders such as medication errors and concerns surrounding staffing. In the past few years, the list has reflected the reality of living during a global pandemic, with 2022’s top 10 concerns including clinician’s mental health, supply chain disruptions, and vaccine coverage gaps. This year’s list moves away from the pandemic somewhat, but still includes some fallout from COVID-19, with the number one concern reflecting a crisis among our youth: pediatric mental health.

According to the report:

“Concern for pediatric mental health was already high during the 2010s due to the growing use of social media, limited access to pediatric behavioral health providers, drug and alcohol use, gun violence, and socioeconomic impact, among other stressors. However, pediatric mental health issues have been exacerbated by the COVID-19 pandemic, with a 29% increase in children age 3 to 17 experiencing anxiety and a 27% increase in depression in 2020 compared with 2016.”

The report lists some recommendations to confront this issue, including securing leadership support and resources to evaluate the organization’s pediatric […]

2023-04-05T12:25:54-04:00April 5th, 2023|patient safety|0 Comments
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Respiratory Illness Surge: Differentiating and Treating RSV, COVID, and Flu in Children

Concern about a respiratory ‘triple-demic.’

Electron micrograph image of respiratory syncytial virus (RSV)/Image source: CDC

Take a walk through many of the country’s pediatric emergency departments (EDs) and inpatient units right now and you will be greeted with the sounds of pinging monitors, suction, and coughing as “respiratory season” settles in.

This will be the first fall and winter that many young children have been back at schools and day cares, largely unmasked, in nearly three years. While respiratory syncytial virus (RSV) and influenza are yearly problems in pediatrics, an unseasonably early and severe surge in RSV is causing an unprecedented number of hospital admissions that is already straining many health systems.

Public health officials are already warning of a “triple-demic” this year as the current RSV surge coalesces with expected rises in influenza and COVID cases. This, of course, does not include the dozens of other respiratory viruses that affect children each winter, including the atypically severe cases of rhinoviruses/enteroviruses and parainfluenza that have already been reported this year.

RSV, influenza, COVID have subtly different symptoms.

While RSV, COVID, and influenza are all viral infections that cause acute respiratory symptoms, they can present with subtly different symptoms. The […]

2022-11-07T11:09:33-05:00November 7th, 2022|infectious diseases, Nursing, pediatrics, Public health|0 Comments
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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 care […]

2022-09-14T10:01:23-04:00September 14th, 2022|family experience, nursing roles, pediatrics|1 Comment
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A Mother’s Argument for Patient Self-Advocacy in Rett Syndrome Using an Eye-Tracking Communication Device

Kalika using her eye-tracking augmentative and alternative communication (AAC) device. Photo courtesy of the author.

I jerked awake at 1 AM to the sound of frenzied footsteps and insistent beeping in my five-year-old daughter Kalika’s hospital room. She lay in deep slumber, recovering from gastrostomy surgery. Two nurses hovered at the foot of her bed with deep frowns and voices betraying concern. Kalika’s blood pressure had plummeted alarmingly, and she appeared unresponsive.

After several minutes of prodding, she opened her eyes. The head nurse turned to me and said, “We need to see if she’s alert. Can you get her to respond on her device?”

I nodded and grabbed Kalika’s eye-tracking communication device. Holding the device over her, I asked her how much pain she felt. Kalika scanned the “Pain” page in her speech software and said: “Some pain.”

The nurse turned to me and said: “Can you ask her another question? Ask her how she feels.” I flipped to the “Feelings” page and asked, “How do you feel?” Kalika surveyed the screen and said: “Tired, tired.”

Satisfied that Kalika was in fact responding appropriately and consistently, the nurse said, “We’re good. Great job!”

Incorporating patient […]

2022-02-17T10:51:23-05:00February 17th, 2022|Nursing|0 Comments
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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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