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 […]

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 […]

Who’s Going to Smile at My Baby? When the Pandemic Comes to the NICU

From the doorway, I watched the mother gently stroke her newborn’s forehead. “I love you,” she whispered. “I’ll be back soon.”

As a resource parent in the neonatal intensive care unit (NICU) at a large children’s hospital, I am privileged with the task of offering support to families. This was a typical stop in one of many patient rooms. As I gingerly entered the room, the mother glanced up at me, tears welling in her eyes as she scrambled to adjust her mask.

“I’m sorry,” she stammered. “I didn’t want to cry.” A tear rolled down her cheek.

“Not at all,” I replied. “I understand. It’s hard being a mom in the NICU, now more than ever.”

I invited her to share her feelings, hoping to offer some help or comfort. Wiping her cheek with her sleeve, she explained that the pandemic visiting rules had made it difficult to be at her baby’s bedside.

“I have other children, and I need to go home to watch them. The hospital rules say I am the only person allowed to take off their mask in her room, but she needs to see faces for her development. Who is going to smile at my baby when I’m not here?”

Speaking from personal experience.

2021-02-08T09:43:44-05:00February 8th, 2021|family experience, Nursing, Patients, pediatrics|0 Comments

Hospital Visiting Policies in the Days of COVID-19

Last month, I watched a YouTube video with two physicians, ZdoggMD (Zubin Damania) and Vinay Prasad, both active on social media, discussing Prasad’s perspective that allowing patients “to die alone is a human rights violation.” He argued that clinicians should not accept blanket rules from administrators and believes there are ways around what seems to have been standard practice in hospitals during the COVID-19 pandemic.

So when we asked on AJN’s Facebook page (December 13), “Should hospitals allow patients with Covid-19 to have visitors?”, I was surprised that the comments were split. Many respondents supported the need for patients to be able to have loved ones with them, but many others felt visitors shouldn’t be allowed because PPE was scarce or because visitors didn’t follow rules and, as one commenter noted, “We don’t have time to be the PPE police.”

No one should die alone.

Nurses have been assisting patients to connect with family members by tablets or mobile phones, or in many cases filling in as surrogate family at the time of death. A colleague told me that in her ICU, nurses decided no one would die alone and made sure that one member of the staff was there with the patient. And while this was comforting to many families, I know […]

Those Special Moments Nurses Sometimes Talk About

Before I became a nurse, I heard that nurses have special moments with their patients and families that they never forget, but I never truly understood what that meant.

My first neonatal code occurred about six months after I completed my orientation in the pediatric emergency department. I remember that shift being a particularly busy one. In the midst of the hustling and bustling of assessing and medicating patients and reevaluating and discharging them, I heard banging on the triage door and saw a mother and father wheeling in their baby carriage, frantically crying out that their baby Skye was blue in color.

By S.Hermann and F.Richter/Pixabay

I remember quickly removing her clothing and seeing how cyanotic she was, all while an electrocardiogram was being obtained and she was placed on the cardiac monitor. I recall hearing the doctors paging overhead for pediatric respiratory and anesthesiology to assist with resuscitation. Other team members included a CNA and a medical student who tried to relax the parents but were understandably not successful.

There were multiple unsuccessful attempts to obtain peripheral vascular access in Skye. I can still see the look of terror on Skye’s parents’ faces as the drill gun used to insert the intraosseous access whirled into baby Skye’s […]

2020-10-23T10:48:41-04:00October 23rd, 2020|family experience, Nursing, Patients, pediatrics|0 Comments
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