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's Story


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 frightened.

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 laughed.

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 snack then.

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.

Patient Characteristics


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.

Nurse Characteristics


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.

Nurse-Patient Outcomes


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.

Conclusion


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.

Acknowledgements


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.

References


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.
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