Global Pediatric Palliative Care Lynn Clark Callister, PhD, RN, FAAN
T
he World Health Organization (WHO) promotes holistic care for children who have congenital conditions that limit survival to adulthood, who have a terminal disease that does not respond to curative treatment, or who experience severe life-threatening trauma. Although pediatric palliative care in the United States, Canada, and the United Kingdom focuses on care that includes the promotion of physical, emotional, mental, and spiritual well-being in dying children and their families, in many other areas of the world pediatric palliative care is uncommon. Comprehensive international guidelines for nurses and other healthcare providers do not exist. It has been estimated that two-thirds of adults and children who need palliative care live in developing countries that have less than 10% of the world’s resources (Rajagopal, Mazza, & Lipman, 2003). Children’s Hospice International (www.chionline.org) estimates that globally, 7 million children could benefit from palliative care. In some countries in Asia and the Middle East, children are often not told of their diagnosis of a terminal disease and their prognosis. For example, 6-year-old Yoko was diagnosed with an inoperable brain tumor but told by her parents she had a “lump on her head” (Kato et al., 2004). Support services for siblings and parents may not be available in many countries. In Yoko’s situation, her brother suffered deep-seated feelings of grief and loss when she passed away. Internationally, community healthcare palliative care offerings may be designed to treat elderly persons, but few such services are provid2
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ed for dying children and their families. Healthcare services developed for the elderly population are clearly not congruent with the developmental and chronological age of children. Because home pediatric palliative care is uncommon in some countries, family members, especially mothers, have a high level of caregiver burden. School services in homes, pediatric hospitals, and hospice units are generally not available for children globally. One of the many issues of concern is pain management for dying children, and not surprisingly it is common for such children to be undermedicated. Although we know that children could be relieved of suffering with appropriate pain assessment and increased availability of pharmaceutical resources, the cost of medications becomes a perceived problem. {CO1}It is estimated, however, that generic immediate-release morphine tablets or morphine solution costs about 1 cent US for 10 mg, so with a modest investment of financial resources, palliative care medication could be provided in the developing world and relieve much pain and suffering. WHO has begun palliative care projects for persons with cancer and HIV/AIDS in Botswana, Ethiopia, Tanzania, Uganda, and Zimbabwe. The Foundation for Hospices has generated services in Morocco, Egypt, the Congo, Ghana, Namibia, Nigeria, Sierra Leone, the Gambia, and Swaziland. These services do not focus specifically on pediatric palliative care, however. In 2002, a review was conducted on palliative care in 28 countries; subsequently, the International Observatory on End of Life Care was formed to foster global partnerships and collaboration.
Children’s Hospital International was established in 1983 to promote palliative and hospice services throughout the world, and the Initiative for Pediatric Palliative Care (www.ippcweb. org) was established as an educational and quality improvement effort to promote family-centered care for children at the end of life in 27 countries. Such efforts are inspiring, but more effective pediatric palliative care that is sensitive to the ethical, cultural, spiritual, and age-appropriate needs of dying children is needed throughout the world. In facilitating a “good death,” the Qu’ran suggests, “May you be wrapped in tenderness, my brother, as if in a cloak” (Shakir, 1998). In such tender times of passing, we are reminded that “We are not human beings having a spiritual experience; we are spiritual beings having a human experience” (Lancaster, 1997, p. 72). ✜ Lynn Clark Callister is a Professor, College of Nursing, Brigham Young University, Provo, UT, and an Editorial Board Member of MCN. She can be reached via e-mail at
[email protected] References Kato, Y., Yano, I., Ito, F., Yanagisawa, T., Hoshi, Y., & Eto, Y. (2004). Home-based palliative care for children with cancer in Japan: Present issues and future prospects. Pediatrics International, 46, 478-479. Lancaster, R. (1997). Spirituality: The heart of nursing. Victoria: Ausmed Publications. Rajagopal, M. R., Mazza, D., & Lipman, A. G. (2003). Pain and palliative care in the developing world and marginalized populations: A global challenge. New York: Haworth Medical Press. Shakir, M. (Ed.). (1998). Holy Qur’an. New York: Tahrike Tarsile Qur’an. Zerwekh, J. V. (2006). Children facing death. In Nursing care at the end of life: Palliative care for patients and families (pp. 265-288). Philadelphia: F.A. Davis.
September/October 2007
