1. Kavanaugh, Karen PhD, RN, FAAN
  2. Bowden, Vicky R. DNSc, RN

Article Content

In 2003, the Institute of Medicine published a landmark report outlining the current state of pediatric palliative and end-of-life care (Field & Behrman, 2003). This report discussed the importance and impact of quality palliative and end-of-life care and illustrated that our current system of healthcare often falls short of what we can and should be doing to help these children and their families. It also offers recommendations for improving care in five major areas: providing and organizing child- and family-centered care, financing, legal and ethical issues, education of health professionals, and directions for research. In the last 3 years, researchers have begun to make great strides in exploring and improving care in several of these areas, yet much more needs to be done.


Our goals in preparing this special issue of MCN were twofold. First, we wanted to highlight the progress being made in the following areas: (a) development and implementation of clinical practice guidelines and institutional protocols for bereavement care, (b) development of community-based, regional information programs and resources to assist local clinicians and families, (c) development and implementation of continuing education programs for providers, and (d) restructuring insurance benefits to include hospice benefits for children. Second, by making providers aware of successful clinical and educational programs, it was our hope that nurses would take this information and work within their own institutions to develop and expand palliative care.


Scholars have begun to examine the implementation, use, and success of hospital-based pediatric palliative care programs. In their article in this issue, Leuthner and Jones describe a perinatal palliative care program designed to provide palliative care from the time of initial prenatal diagnosis of a life-limiting condition. Duncan et al. have written about the work of an interdisciplinary pediatric care consultation service at the Dana Farber Cancer Institute and Children's Hospital in Boston, and Kobler et al. offer clinicians a thoughtful analysis of the concept of ritual and practical guidelines for incorporating the use of ritual into nursing care to help children and families create lasting and meaningful memories at the end of life.


Others have begun to change this area of care by better preparing future generations of clinicians through improved nursing education. In her article, Malloy provides an overview of a national educational program, "End-of-Life Nursing Education Consortium-Pediatric Palliative Care (ELNEC-PPC)," and highlights some of the exemplar clinical activities that have emerged as a direct result of nurse participation in the ELNEC-PPC programs. Andreoni and colleagues provide an overview of published policies, guidelines, and educational resources that can be used to promote the implementation of palliative care services in a variety of clinical settings. The development of the Children's Hospice and Palliative Care Coalition in Northern California is highlighted in an article by co-directors Lori Butterworth and Devon Dabbs, with consultant Elinor Hall. You cannot help but be inspired when you learn how two concerned mothers used their talents to build a statewide coalition to improve pediatric palliative care services and change state legislation to support funding for pediatric palliative and hospice care.


Although understanding the need for improvement is critical, we must all work toward making the IOM guidelines a reality. In other words, we can all contribute to helping these children and families receive the care they deserve. This issue provides clinicians and educators with a place to begin.




Field, M. J., & Behrman, R. E. (Eds.). (2003). When children die: Improving palliative and end-of-life care for children and their families. Washington, DC: The National Academies Press. [Context Link]