Nurses in palliative care are intimately involved in the human experience of serious illness, death, and bereavement care. This care is at times complex and at other times profound in its simplicity. I was reminded of this while at an ELNEC-Pediatric course. The course included a panel of bereaved parents who had been invited to share their experiences in having a child with terminal illness. At this particular course, I had rushed into a meeting room to be sure I did not miss the parent panel, always a highlight of the course, as we are reminded of what really matters in patient care.
Parents had presented their stories, all incredibly moving as they recalled memories from initial diagnosis of serious illness in their beloved child, the trauma of treatments, hopes, family struggles, remissions and reoccurrences, and finally, the last days of life and the death of their child. As always, I stood in awe of these parents who now have the strength and commitment to share their stories to help advance palliative nursing.
The panel was then open for questions from the audience. After a few specific questions from the participants asking about the details of a child's illness, a participant asked a mother of a 6-year-old who had died from leukemia after a few years and many hospitalizations a very important question: "Of all your years of encounters with the health care system, what is the 1 thing you remember most that helped or offered support to your family?" I held my breath waiting for the mother to respond. What would she say? What could possibly be the most important thing to a mother after years of illness and death of a child?
The mother paused, very thoughtfully, but then responded with great certainty. She said, "Each time my son was hospitalized, it was important for his brother and sisters to come visit, both for him and for them. When we came to the hospital, the nurses called my children by their names."
That was it. The nurses called her children by their names. I was stunned, but over time, I realized the message she conveyed. The nurses humanized this family's experience of illness. They remembered that this was a family, real people, real lives, and these nurses honored the sacred nature of life-threatening illness and the profound opportunities each of us has to create a comforting memory for a bereaved mother.
The articles in this issue of the journal speak to the simple yet profound nature of our work. These articles describe a system of supporting nurses through a tool for caring for the imminently dying, research projects that critically examine our care and address often ignored aspects of care, such as bereaved fathers' experiences. These articles ask probing questions: When is it that patients should not die at home? Why do African Americans decline hospice? These articles bring the voice of patients and families, even voices that challenge us to change systems of care, as Metzger and colleagues report, because "That Don't Work for Me."
For every issue of the journal, I have dealt with each manuscript separately through the process from submission, review, revision, acceptance, proofing, to publication. And then when it is time to assemble the next issue's collections of papers, I am in awe of the collective-the diversity of research and practice in palliative care yet the collective voice that speaks to nurses' meaningful life- and death-altering work.
As you read the articles in this issue, I hope that you are also inspired by the ever-growing, maturing, important evidence that is occurring related to palliative nursing. And after reading this issue, go back to work and do something profound. Call the children by their names.
Betty Ferrell, PhD, MA, FAAN, FPCN, CHPN
Editor-in-Chief
[email protected]
The author has no conflicts of interest to disclose.