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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Staff Nurses at the Center: Joyce C. Clifford’s Still Radical Notion

By Katheren Koehn, MA, RN, who is a member of the AJN editorial board

It was with great regret that I read of the passing of Joyce C. Clifford last week. She was a nurse whose career as a nurse administrator and leader was spent empowering nurses, from the bedside to the boardroom. Much has been written since her passing about her nursing leadership at the administrative level. I would like to take some time to recognize her as a nurse leader who empowered nurses at the bedside.

I first learned of the work of Joyce C. Clifford from a staff nurse who’d moved from Boston to Minneapolis in the late 1980s. The entire time this nurse and I worked together she was in mourning for the hospital and job she’d left behind in Boston. Almost every day she talked about how wonderful Beth Israel was and how great it had been to be a staff nurse there. She talked about primary nursing, nurse autonomy, and interdisciplinary respect. At the time, none of these terms were familiar to me, but I knew she was telling me that “my” hospital, where she now worked, could never measure up to the fabulous BI.

I next learned of the work of Dr. Clifford through the book Code Green: Money-Driven Hospitals and the […]

2016-11-21T13:11:32-05:00November 4th, 2011|career, nursing perspective|7 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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