Pain Management for the Child with Cancer in End-of-Life Care: APON Position Paper

Abstract

Although there have been major advances in the treatment of childhood cancer with an overall survival rate of more than 70%, cancer continues to be the leading cause of death in children resulting from disease. In 1998, 2,500 children in the United States died of cancer-related causes. Each year cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, and acquired immunodeficiency syndrome combined. The Association of Pediatric Oncology Nurses (APON) is the leading professional organization for nurses caring for children and adolescents with cancer and their families. The highest standards of nursing practice are achieved through education, research, certification, advocacy, and affiliation. It is the position of APON that pain in the child dying of cancer can be effectively managed. This can be accomplished by making the prevention and alleviation of pain a primary goal, partnering with the patient and parents, and aggressively using appropriate pharmacologic and non-pharmacologic interventions. The pediatric oncology nurse has an essential role in the child's pain management at the end of life through nursing assessment, identifying expected outcomes, and performing and evaluating interventions.

Coping With Cancer: A Web-Based Educational Program for Early and Middle Adolescents

“…Although there have been improvements in the care of these children with overall cure rates approaching 80%, cancer continues to be the leading cause of diseaserelated death in childhood (American Cancer Society, 2005;CureSearch, 2008;Smith & Hare, 2004). In fact, more children die from cancer than asthma, cystic fibrosis, congenital anomalies, diabetes, and AIDS combined (Hooke, Hellsten, Stutzer, & Forte, 2002).…”

Experiences of Pediatric Oncology Patients and Their Parents at End of Life

“…Hendricks-Ferguson (2008) and Hongo et al (2003) evaluated the use of multimodal approaches to pain management during EOL, including pharmacologic therapies (opioids, other analgesics, chemotherapy, and radiation therapy) as well as nonpharmacologic therapies (physical presence, comfort activities, and physical closeness). Only 3 of the studies reviewed specifically discussed outcomes of pain management (Anghelescu et al, 2010;Hooke et al, 2002;Schiessl et al, 2008). Hooke et al (2002) identified strategies for determining outcomes, including partnering with the patient and family.…”

“…Schiessl et al (2008) defined daily dose changes, daily patient-controlled analgesia boluses, and pain scores as outcomes for pharmacologic interventions. Anghelescu et al (2010) and Hooke et al (2002) identified patient pain scores as key outcome indicators for evaluating pain interventions.…”

Development of an in‐home standardized end‐of‐life treatment program for pediatric patients dying of brain tumors

“…Research has shown that providing EOL care for a dying child in the home can be stressful for some healthcare providers. In one study, investigators reported that the most difficult aspect of providing home EOL care for the dying child was having the family continuously witnessing the child's physical decline and the healthcare providers' stress related to monitoring the child's care during the nighttime (Hooke, Hellsten, Stutzer, & Forte, ). Other reported difficulties of healthcare providers included fears related to what may happen at the time of the child's death and unexpected physical symptoms and nursing responsibilities in caring for the dying child and his/her siblings (Collins, Stevens, & Cousens, ; Theunissen et al., ).…”