Stephanie Gilbertson-White

Research
The support I received in 2006-2007 from Nurses Educational Funds, Inc. was put toward my attendance at the Summer Genetics Institute at the National Institutes of Health. This in-residence program is geared toward nurse scholars interested in developing a genetic component to their research.

During the 2 months of the course I studied molecular genetics, included research design and laboratory methods. I was particularly interested in biological mechanisms associated with "sickness behavior" and symptom clusters. The specific aim of my final research proposal is to explore the genetic variants associated with multiple symptoms and increased symptom distress for people nearing the end of life.

The results of this research have the potential to increase understanding of symptoms at the end of life, improve identification of high risk individuals, as well as generate targets for symptom management interventions.

Background
I will never forget the first patient that died on my shift. "Mr. Erickson" had become well known to our floor over the preceding 6 months, with increasingly frequent admissions for respiratory distress and ventilatory support secondary to end-stage COPD. Earlier that day he, along with his family, and the physicians had decided to fore-go future CPR or artificial ventilation and take a palliative care approach. They came to this decision because his respirtory status was declining fast and it looked like he would need to be re-intubated and placed on a ventilator for the N-teenth time. The likelihood of him getting off this time was slim-to-none; he had reached the end of reasonable treatment options. He died comfortably with his family at his side within 6 hours of starting palliative care. Mr. Erickson was the first person I watched die - and when I first heard of palliative care; I recall his family's shock by the prognosis of "terminal" and by speed of his death that day - though the nurses saw it coming for days if not months; and even as an inexperienced nursing assistant I was surprised and confused by the lack of symptom management, the needless suffering and the recurrent admissions over all those months - the palliative care seemed to come too late.

For over ten years, my nursing practice has revolved around the care of hospitalized adults with chronic or terminal diseases, frequently at end-stage. Though the settings have changed, I have developed a passion for easing suffering through symptom management and have come to see the principles of palliative care as being entirely aligned with the core philosophy of nursing. I answered the call to nursing during my undergraduate education at the University of Wisconsin-Madison. I wanted to make a difference in the world and felt that providing direct patient care, as a nurse was the best way for me to accomplish that goal. After several years of clinical nursing, I was drawn to advanced nursing education with a desire to influence patient care beyond those I directly encountered at the bed-side. My goal then, as it is now, was to generate and disseminate knowledge and eventually become faculty in a school of nursing. My master's program had a dual role focus, educator and med-surg. CNS with an emphasis on palliative care. Upon graduation in May 2003, I began work at the University of Wisconsin School of Nursing with a dual appointment as a Research Specialist for NIH-funded cancer pain management study and an Undergraduate Clinical Instructor. This dual appointment allowed me to simultaneously participate in nursing research and clinical education as well as become a member of the community of scholars in nursing.

Since moving to San Francisco to pursue a PhD in 2005, I have simultaneously been working at University of California Medical Center as a Clinical Nurse Specialist in Pain Management. My practice involves direct patient care through nursing consultation, staff development, and system level leadership for the care of patients with both acute and chronic pain. Maintaining a clinical practice while in school has its challenges, but I am committed to remaining clinically competent and in-touch with the challenges, questions, and ideas of bed-side nurse clinicians.

I have been touched many times by the struggles experienced by chronically ill patients with end-stage disease and their families. The vast majority of Americans turn to the health care system at the end-of-life and rely upon nurses to help them manage the symptoms associated with advanced disease and dying. All too frequently the aggressive symptom management falls secondary to aggressive disease management. I plan to conduct research that will result in practice changes that includes the integration of palliative care throughout the disease trajectory for chronically ill individuals.

In addition, there has been significant publicity and study of the nursing shortage, which is in no small part due to the growing nursing faculty shortage. I know that I can have the greatest impact on the nursing shortage and consequently improve patient care through nursing education. My experiences in the clinical care setting, research, and nursing education have prepared me for the challenges and rewards ahead of me as doctorally prepared nurse. In pursuing a PhD. in Nursing, I am preparing myself for a career as a nurse scientist and a nursing educator.