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Article Excerpt
Sumner (2006) used a children s book to poignantly describe the life cycle of nature:
There are lots of living things in our world. Each one has its special lifetime. All around us, everywhere, beginnings and endings are going on around us all the time. So, no matter how long they are, or how short, lifetimes are really all the same. They have beginnings and endings, and there is living in between (p. 909).
When a child dies, this cycle seems unnatural. Suddenly, human potential is lost, and dreams quickly become shattered. Parents, siblings, and health care providers are left to grieve the loss of the child. This dilemma has encouraged many nursing leaders to explore methods of research and evidence-based practice to promote better outcomes for everyone involved in the palliative process.
Pediatric palliative care has become a topic of increasing study and discussion in the health care arena. In the past, most palliative care programs have focused on the adult population. Research has shown that pediatric palliative care programs and education are needed (Contro, Larson, Scofield, Sourkes, & Cohen, 2004). Further research shows that out of 3,000 hospice programs in the United States, fewer than 10% provide end-of-life care to children, and even fewer provide care for dying neonates (Romesburg, 2007).
Health care professionals face numerous obstacles and challenges while providing care to this unique population of clients and their families. Barnard, Hollingum, and Hartfiel (2006) suggest the care associated with terminal illness demands the qualities and skills that arise from compassion, reciprocity, professional commitment, and the ability to communicate with patients and their families. Professionals who witness the pain and suffering of children and their families may also experience pain and suffering themselves. Without comprehensive pediatric palliative care programs, nurses may lack the education and training needed to meet the challenges of this special care. Health care workers may experience emotions such as helplessness, anger, sadness, and anxiety while providing care to dying children. These feelings may quickly lead to nurse burnout and increase turnover rates in the hospital setting (Weigel, Parker, Fanning, Reyna, & Gasberra, 2007).
History of Palliative Care
The concept of palliative care originally evolved from the hospice philosophy of meeting gaps in care for seriously ill and dying patients. The Latin word palliate means "conceal or alleviate symptoms without curing" (Romesburg, 2007). The earliest recording of the word palliate can be traced to the late 14th century, where it originated in Elizabethan and Indo-European traditions (Morris, 1998). In 1967, Dame Cicely Saunders founded the first modern hospice program in the United Kingdom, which emphasized the importance of compassion and medical science (Georges, Grypdonck, & Dierckx de Casterle, 2002). Florence Wald, Dean of Yale University, invited Saunders to the U.S. to learn about her experiences, and in 1974, she founded the first home hospice program based in New Haven, Connecticut. In 1975, St. Luke's Hospice in New York was the first hospice in the U.S. incorporated into an existing medical center. In 1982, the first children's hospice center opened in England (Foster, 2007). Despite growth in hospice initiatives, researchers have only just begun to explore the unique aspects of pediatric palliative care
Palliative care was first introduced in 1990 by the World Health Organization (WHO) (2004) and is currently defined as "an approach to care which improves quality of life of patients and their families facing life-threatening illness through prevention, assessment, and treatment of pain and other physical, psychological, and spiritual problems." WHO (2004) further describes palliative care for children as the active total care of the child's body, mind, and spirit, as well as a means of providing support to the family.
To provide this type of palliative care today, hospitals throughout the U.S. have increased initiatives to meet the unique needs of both adults and children. Although there are some commonalities, pediatric palliative care differs from adult palliative care in several ways that preclude the extension of existing adult services into the pediatric world (Sumner, 2003).
Pediatric Palliative Care
Each year in the U.S., 55,000 children less than 20 years of age die, and many of these children experience a lengthy illness (Carter et al., 2004). Common diagnoses affecting the length of children's lives include prematurity, congenital anomalies, sudden unexpected infant death syndrome (SIDS), chromosomal defects, trauma, neurodegenerative disorders, acquired immunodeficiency syndrome (AIDS), and cancer. Cancer remains the leading cause of disease-related death in children and adolescents. It is estimated that 25% to 33% of children with cancer die; the average number of cancer deaths in children is 2,200 per year in the U.S. (Himelstein, Hilden, Boldt, & Weisman, 2004). However, even with these statistics, children's palliative care programs are not as prevalent as adult programs.
A possible reason for lack of pediatric palliative care programs may be that most people are just unaware of the need or just do not want to accept that children die. Children,...
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