'Vital need' of comfort care for chronically ill children

[cougarnurse]

Hospice is often over looked, but especially in Ped's!

The Karen Ann Quinlan Hospice hosted Sarah Ur, director of Outreach for the Circle of Life Children's Palliative Care Center, who spoke to hospice nurses and staff on the topic of palliative care for pediatric patients.
Hospice leaders say there is a vital need for children with chronic and life-limiting illnesses and their families to be cared for and comforted through the course of their sickness, and the center provides a centralized program that serves all eligible children throughout their disease.

They speak to all aspects of the child's well-being and quality of life with full culturally sensitive support services that are also made available to the family.

Of the 50,000 chronically ill children in the U.S. who died in 2003, studies have shown that only one in ten received palliative (comfort) care. At the time of Circle of Life's inception no pediatric specific palliative care hospice program existed. The center was the vision of James Oleske, MD, a caring pediatrician and an internationally renowned leader in the fight against pediatric AIDS, and Episcopal Deacon Lynn Czarniecki, a former advanced practice registered pediatric nurse. Through their work in Newark treating children afflicted with AIDS, they recognized an unmet need in the current health care system.

Today, the center provides programs for children under the age of 21 and their families, both at home and in-patient. The programs include pain and symptom management, child life activities and nontraditional medical therapies, while helping to maintain the highest quality of life for each child as long as possible.

Their future goal is to establish the "Magnolia House", a special home for these children, where parents and siblings are always welcome, even the family pet.

For more information on the Circle of Life Children's Center, log onto Circle of Life Children's Center - NJ. They are located at 274 South Orange Ave, Newark.

Karen Ann Quinlan Memorial Foundation is passionately dedicated to providing hospice care for the terminally ill, bereavement for those who have lost loved ones and home care assistance for recovery patients. For northern New Jersey, call (800) 882-1117 to reach any of the services at Karen Ann Quinlan Hospice, 99 Sparta Ave., Newton; Karen Ann Quinlan Home Health Care, 755 Memorial Parkway, Phillipsburg; and Karen Ann Quinlan Hospice, 315 West Harford St., Milford, Pa. Further information can be found online at www.karenannquinlanhospice.org.