Pediatric Critical Care Nursing: Annie's Story
Critical Care Nurse, Vol 21, No. 5, October 2001
Danielle Rohde, RN, BSN
and Patricia A. Moloney-Harmon, RN, MS, CCNS, CCRN
Danielle Rohde is a registered nurse II in the pediatric
intensive care unit at The Children's Hospital at Sinai in Baltimore, Md. She is
also a member of the Synergy Committee at Sinai Hospital. Patricia Molonery-Harmon
is an advanced practice nurse/clinical nurse specialist at The Children's Hospital
at Sinai in Baltimore. She cochairs the Synergy Committee at Sinai Hospital.
The Synergy Model describes a nurse-patient relationship that
optimizes outcomes for patients and their families.(1) All patients, regardless
of age, have similar needs that they experience across a continuum from health to
illness. The dimensions of the nurse's competencies are driven by the needs
of patients and their families. When synergy exists between the needs of the patient
(and the patient's family) and the competencies of the nurse, the patient's
outcomes are optimal.
Annie was a 7-year-old girl with rhabdomyosarcoma. She was
well known to the nursing staff of the pediatric and pediatric critical care units.
During the course of her treatment, she had complications that required critical
care monitoring. After 7 months of treatment, her deterioration was rapid. The nursing
staff realized that her care would need to shift from obtaining cancer remission
to orchestrating death.
Annie's last admission was for neurological symptoms.
Her computerized tomography scan revealed metastasis to her brain. Shortly thereafter,
she could no longer see because the tumor was encroaching on her optic nerve. This
development was very difficult for the child, who had often entertained staff by
pretending she was a doctor and answering the phone at the nurse's station.
She became very demanding, constantly pushing the call button and asking for every
little thing. We realized that she wanted someone to be with her because she was
The nurses surrounded Annie with as much love and attention
as possible. We told her constantly that we loved her. We always responded to her
call bell even when we knew that her father was at her bedside. She always told
us that she wanted only her "nurse" to give her ice chips or a back rub.
Many of us would rub her back for hours even though our arms were often hurting
from rubbing; we would not stop until someone could relieve us. We heated her lotion
so her back rubs would be warm and relaxing. We always made sure that we soaked
her feet in warm water because she told us how good that made her feel. When she
was agitated or scared, one of us would sit next to her and whisper in her ear to
imagine herself on a beach and to listen to ocean waves hit the shore. We took turns
reading her books, taking her outside and throughout the hospital on her stretcher,
and just sitting next to her bed, holding her hand. Sometimes, if we were too busy
to sit with her, we moved her stretcher out by the nurse's station so she would
not be alone.
One day, Annie was especially depressed because she could
not see. I made up a game to get her mind off of being ill. She described what a
nurse looked like and I had to guess who she was describing. Then I described what
a nurse did or said and she would guess the person. We laughed - most importantly,
She had her tumor debulked a short time before she died. Fortunately,
she regained her sight. She made the most of her last days. She wanted us to sing
to her and then she recorded herself singing and played it for everyone. One of
her favorite recordings was played at her funeral. She also loved to eat tuna fish
sandwiches and potato chips at 1:30 AM - we always made sure she had her favorite
During her last few days, she constantly wanted her nurse
with her. Even though she did not require 1:1 care, with our manager's approval,
we made her a 1:1 assignment. Nurses worked extra shifts so that the nurse caring
for Annie did not have to take any other patients. I was able to hold her for 4
hours on the day before she died. After she died, all of the staff were comforted
by knowing that we were able to "orchestrate" her death, supporting both
Annie and her parents through this difficult time.
The Synergy Model describes patient characteristics, which
are unique to every patient and care situation. Annie was minimally stable because
she could not maintain a steady-state equilibrium as she continued to deteriorate.
She was complex because her emotional needs were very high and her family often
could not be there to support her. She relied upon the nurses to support and comfort
her. She was extremely vulnerable because of the psychological stressors; the adverse
outcome for her could be a lonely and painful death. She was minimally resilient
because her restorative capacity was no longer functioning. She did not have many
resources available to her; however, she participated somewhat in her care by identifying
her needs to the nursing staff. Her trajectory of illness was predictable; getting
better was no longer an option for her.
Nursing competencies also span a continuum that is based on
patient's needs. The Synergy Model describes 8 competencies that are essential
for contemporary nursing practice. Even though all 8 competencies are critical,
each competency assumes a higher or lower degree of priority for each patient, depending
on the patient's characteristics.(1) The competencies that were of highest priority
for Annie were caring practices, advocacy/moral agency, and systems thinking.
Caring practices are a constellation of nursing activities
that are responsive to the uniqueness of the patient and the patient's family
and create a compassionate and therapeutic environment with the aim of promoting
comfort and preventing suffering. Caring behaviors include, but are not limited
to, vigilance, engagement, and responsiveness.(1) The nurses were extremely responsive
to Annie's unique and changing needs. Our care created a compassionate environment,
which ensured her safety while providing her comfort. Vigilance was required in
this situation, especially during the period when Annie could not see. Our actions
prevented suffering brought on by loneliness, pain, and fear.
Advocacy and moral agency is defined as working on another's
behalf and representing the concerns of the patient, the patient's family, and
the community. Moral agency requires "knowing the patient," which creates
trust inherent in the nurse-patient relationship.(2) When a cure is no longer possible,
nurses take a leadership role in ensuring that death occurs with comfort and dignity.
Orchestrating death is describes as nursing's "most profound contribution
to humankind."(2) The nursing staff provided Annie with support and comfort
throughout her process of dying. We also supported her parents. Even though Annie's
parents could not always be there, we provided them with whatever they needed to
comfort Annie. Her parents wanted all of Annie's nurses to be at her funeral.
We made sure that we all attended.
The best outcome for Annie was death with dignity, love, and
comfort. Annie experienced this. Her death came peacefully and her parents and nurses
knew that everything possible had been done to accomplish this ending. Even though
safe passage often refers to the prevention of complications, providing Annie with
a good death was an optimal outcome.
The Synergy Model describes how synergy between patients'
characteristics and nurses' competencies optimizes patients' outcomes. The
Synergy Model is applicable across the life span and in all types of situations
with patients. Pediatric patients have special needs that mandate that certain competencies
take priority. Prioritization of competencies is also driven by the patient's
situation. When cure is not an option, providing compassionate end-of-life care
results in the best outcome for the patient and the patient's family.
The authors thank the pediatric and pediatric critical care
nursing staff who gave their hearts and souls to caring for Annie. They are shining
examples of the Synergy Model in action.
1. Curley MAQ. Patient-nurse synergy: optimizing patients'
outcomes. Am J Crit Care. 1998;7: 64-72.
2. Curley MAQ. The essence of pediatric critical care nursing.
In Curley MAQ, Moloney-Harmon PA, eds. Critical Care Nursing of Infants and Children.
Philadelphia, Pa: WB Saunders Co; 2001:3-16.