1. Lee-Ribas, Kenna BA, BSN, RN

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I know you are busy. I know your work is emotionally draining. And I know that taking on a student requires energy and time, both of which may be in short supply. Your type of nursing is not task-based, and perhaps when you were learning to be a nurse, the focus was on learning task skills, so you are not sure what to do with a student. Hospice nursing uses task skills as the base on which to build something bigger: trusting relationships with patients and families. While the tasks remain essential, it is the relationship that brings the sense of caring, the presence, the essence of nursing into the lives of families during this time. How do you teach that?


As a student wanting to learn about pediatric hospice nursing, I became frustrated with the lack of instruction available. The standard pediatric nursing curriculum covers treatments for health conditions but not the predicted trajectory of the dying process if those treatments fail. Nursing textbooks, like American society in general, tend to relegate issues of death and dying to one thin chapter, one you might not even have time to get to before the end of the semester.


When I sought out learning materials specifically about pediatric palliative care, I was greeted with the same information repeated over and over again: communication with families, ethical decision making, bereavement, psychosocial and spiritual issues, and above all, a call for more and improved services, for better pain and symptom management for children at the end of life. So, how do I learn that?


I was fortunate to have a faculty advisor who encouraged me to broaden my horizons beyond my immediate geographic area. I drove down to spend some days at George Mark Children's Home in San Leandro, CA, which provides respite and end-of-life care for any child with a life-limiting condition. This amazing organization provided me with wonderful experiences, but their patient census was low-I needed to see more, do more. I attended conferences, seeking out learning opportunities. I asked many people for advice, but the responses of "come to our master's program" did not fit with my intuitive sense that what I needed was simply clinical experience, hands-on education.


Then, at a conference in Michigan, I heard Jody Chrastek and Stacy Remke of Minneapolis Children's Hospitals and Clinics' Home Care and Hospice give a presentation about their training sessions for hospice providers interested in serving pediatric patients. Eureka!! And they were willing to take on a nursing intern: "Write us a list of what you want to learn, and we'll arrange a schedule for you." What more could I ask?


Studying adult hospice care was simple enough to do in my own area-I spent half of two semesters teamed with wonderful and generous nurses in local home hospices. By the time I was heading out from California to Minnesota, I had decided that I needed to spend the bulk of my time in direct patient care, with a few days spent in learning about the systems, protocols, and team function that make it all work. In Minnesota, I was able to spend days with nurses doing home visits, learning about blood draws, port accesses, G-tube management, and other tasks, as well as observing the relationships the nurses formed with the clients and families. I spent days with the pain and symptom management nurses doing rounds in the children's hospitals, learning about titrating doses, medication interactions, pain syndromes, and the interpersonal skills needed to adequately juggle physicians, nurses, and patient needs. I even had the privilege of spending a day in the Integrative Medicine Clinic learning about nonpharmacologic symptom management.


I expected the patient care to be the most exciting part of the trip-that is what it is all about, right? But as a visiting intern, I was outside of the relationship, looking in more than I was taking part in it. What turned out to be most exciting was watching the team members function, providing support for each other, dividing up roles and discussing families' needs, all the while keeping a clear eye on the best interests of the children. This model of excellent teamwork pushed me to dream past my own limitations in thinking about what kind of services we may be able to provide in my own California area some day.


Checking in with my nursing class via the Web, I read, "You must not be frustrated, you must be inspired." This emphatic command was posted by our faculty advisor in response to a fellow senior BSN student's journal reports about her boredom in her senior preceptorship. As students, we are responsible for seeking out learning experiences to move us forward in our personal processes, yet I also feel that there was an element of plain good luck in my ending up where I could see theory in action. After reading for years about the need for palliative care to be integrated into clinical practice before children reach the terminal phase of their illness and hospice services, it seemed amazing to see this being done through the Minneapolis Karuna program, which provides a full range of palliative care services to children who have life-threatening or life-limiting conditions, but who are not yet ready for hospice. Inspiration, indeed.


Halfway through my trip, my partner called me from California: "How are you? Every time I tell someone where you are and what you are doing, they're just devastated." I do not yet know how to explain my work to people who think pediatric hospice is just too "depressing." This work for me is a true calling, and as I meet more and more colleagues in the field, I see that many of us are doing it because it is written in our hearts, in our souls.


I think I can count on one finger the number of times I heard the word "soul" in a nursing classroom. So for those of us who are called to this soul work, please, give us a chance to learn. Accept a student nurse for his or her senior preceptorship. We will not let you down. I am grateful that I had that chance.


Kenna Lee-Ribas, BA, BSN, RN


Kenna Lee-Ribas, BA, BSN, RN, was a home-birth midwife in Tennessee, Kentucky, and California for more than a decade, and now works for Hospice of Pentaluma, Pentaluma, CA. She hopes to help, create and sustain a formal children's hospice program in Sonoma County, CA.