A Pediatric ICU Nurse Finds Relief in Not Compartmentalizing Hard Emotions Like Grief

Editor’s note: Hui-wen Sato is a pediatric ICU nurse in California and a regular writer for this blog who has gone deeply into the topic of grief, her own and that of patients and their families. Her insights reverse our usual ways of understanding grief, finding a generative energy instead of a wasteland. Here is a key passage from a TED-style talk (see video below) she gave at the last End Well Project conference in November 2023. End Well is “a nonprofit on a mission to transform how the world thinks about, talks about, and plans for the end of life.”

“And so I realized that what I was going to need to learn how to do was not compartmentalize, but integrate all of my experiences into all of who I am. And as I started to learn how to integrate all of my experiences, there came a curious relief and freedom with this integration. Because I no longer had to pretend that I didn’t grieve for my patients. I could just grieve. And I could then get in closer and actually learn more about who they were, who their families were, and I could start to provide a kind of care I think I perhaps had always wanted to provide, but perhaps was a little too scared to get close enough to learn how.”

2024-03-28T14:03:14-04:00March 28th, 2024|end of life, Nursing, pediatrics|0 Comments
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Why I Practice Dying: A Nurse’s Perspective

author Diane SolomonI’ve been fascinated by death as long as I remember.

Just before I turned eight, my Grampa Lewis died. The event left a lasting impression on me. He had gone to the hospital, puffy and deteriorating from kidney disease, at age 56. I remember that Dad parked the station wagon with faux wood paneling in the hospital lot and we all got out and stood there in cold December sunlight. Strict visiting hours prevailed then, and no kids were allowed, period. Dad pointed up to Grampa’s window, where he waved down at us through the glaring glass as we waved back. The youngest of four children, I was too embarrassed to admit I couldn’t locate him in the anonymous grid of windows.

At the funeral, I grappled with whether or not to look into the casket. Both available options seemed horrible—be forever haunted by a vision of dead Grampa, or guilt-ridden because I hadn’t respected him enough to look.

As a parent, I know no child should feel alone with that type of decision. But this was the 60s, when feelings weren’t discussed. Although neither an open casket or an embalmed body are traditionally Jewish, Granny must have decided she wanted it this way. At the last minute, as […]

2023-07-19T11:42:15-04:00July 19th, 2023|end of life, Nursing, nursing perspective, palliative care|1 Comment
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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 for […]

2023-06-21T13:06:54-04:00June 21st, 2023|end of life, Ethics, family experience, Nursing|1 Comment
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Crumbled Walls: A Transformative Caregiving Journey

Confronting fragility: a perfectionist father’s illness.

“Nurses make horrible patients,” my dad’s words echoed in my mind as I stood beside his hospital bed. Confined to this cold and sterile room, he, once a seasoned nurse, now teetered between worlds, fighting to maintain control of his crumbling body and the walls that had always surrounded him.

My father took pride in his immaculate exterior wall. He kept a well-manicured lawn and showcased three exemplary children and a life partner we referred to as our “uncle” when outside the wall. The inside structure was sharp and less forgiving. Within the confines of his perfectly controlled life, I was subjected to restrictive diets and forced to starve myself, all in pursuit of fitting his external vision of a perfect 16-year-old girl. I didn’t match his mural, but at least I had “a pretty face.”

In this hospital bed, my father’s wall became brittle and translucent. Machines whirred, extending their tentacles, both charging him with life and subtly stealing it away. Weakened by the long-term use of prednisone, his body bore the weight of cancer’s progression, leaving him moon-faced and unrecognizable. His once unblemished mural, now in ruins, left him dependent and vulnerable, requiring nursing assistance for basic tasks like toileting and bathing.

In his time of greatest […]

2023-06-13T07:28:49-04:00June 6th, 2023|end of life, Nursing, nursing career|4 Comments
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Preventable and Aggressive Care for Cancer Patients: To the Bitter End

There have been a couple of recent studies that confirm what I have observed as a palliative care nurse practitioner (NP) in an academic medical center: that there’s still a tendency to pursue very aggressive care with older people with cancer. While every situation is different, the evidence shows that people with cancer could also benefit from palliative care and advance care planning to make sure they’re getting the best and right care for them.

Palliative care could prevent many ED visits.

The first study to catch my eye as a former ED nurse was Trends and Characteristics of Potentially Preventable Emergency Department (ED) Visits Among Patients With Cancer in the US. This study reviewed data on almost a billion (854,911,106) ED visits, of which 4.2% were made by patients with cancer. The mean age of those patients, not surprisingly, was 66. The study found that more than half of ED visits among patients with cancer, 51.6%, were identified as potentially preventable, with the absolute number of potentially preventable ED visits increasing substantially between 2012 and 2019.

The authors concluded that this highlights “the need for cancer care programs to implement evidence-based interventions to better manage cancer treatment complications, such as uncontrolled pain, in outpatient and ambulatory settings.”

This […]

2023-04-07T09:34:11-04:00April 7th, 2023|end of life, Nursing, palliative care, patient experience, Patients|2 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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