HONOLULU, HAWAII – Hospice Hawaii has introduced the first hospice care program in the state that addresses the specific needs of terminally ill children and their families. The Pediatric Hospice Care Program, which was formally launched this year, gives young patients and family members the necessary medical, emotional and spiritual support to cope with a life-threatening disease or condition.
“Dying children can’t wait,” said Kenneth L. Zeri, RN, MS, president of Hospice Hawaii, explaining his organization’s decision to develop the program. “The unique skills and experience that our medical and counseling staff gained over the years working with terminally ill infants, toddlers and teenagers helped us to build a solid foundation for the program.”
Hospice Hawaii has been providing end-of-life care for terminally ill patients – including children – for more than 30 years. It began developing a dedicated pediatric care program last year and has already provided pediatric hospice care to dozens of families.
In addition to medical care and pain management support, the pediatric care team also provides emotional and spiritual support to the child and the entire family unit, taking time to teach the young patient about death and illness, and helping parents cope with their imminent loss.
“The pediatric care team works through a lot of emotions with the patient, as well as their parents and other family members,” explained Debbie Clark, a social worker on the pediatric care team. “Often times there are feelings of guilt, blame and self-doubt, so we teach parents how to talk to their terminally ill child and help the child share their feelings with parents and siblings.”
Families in the Pediatric Hospice Care Program don’t have to choose between fighting the disease and making their child comfortable. Thanks to federal legislation passed in 2010, a child covered by Medicaid is eligible to receive financial support for both types of care at the same time. Because of this security, the child can receive the comfort benefits that Hospice Hawaii provides and the curative-based treatments offered by hospitals. UHA (University Health Alliance) also offers insurance coverage for concurrent end-of-life care for children who are not eligible for Medicaid.
“Saying goodbye to a parent, who you know has lived a long and happy life, is very different from saying goodbye to a child who has just begun to live,” added Zeri. “This is why it is important for us to provide a pediatric hospice care program for the community.”
Serving the community since 1979, Hospice Hawaii specializes in providing comprehensive, interdisciplinary care to patients with life-limiting illnesses and their families in the comfort of their own homes. Hospice Hawaii also offers care in its two home-like settings in Kailua and Palolo Valley. Created by the community and governed by a local board of directors, Hospice Hawaii strives to meet the physical, emotional, psychosocial, and spiritual needs of patients with quality end of life care. For more information about Hospice Hawaii, visit www.hospicehawaii.org.