Receiving the diagnosis of a serious or life-threatening disorder can be overwhelming. When such an event involves an infant or child, it can be devastating. The idea of numerous doctor visits, trips to the hospital, missed school and other activities, time away from family members, perhaps time away from work for the parents and caregivers, bills and on and on ... Even for those children who eventually recover and get well, this can be and often is a life changing event for those involved. For those children and their families who do not get better or for those who pass away, it can be an overwhelming tragedy.
"The recognition of the magnitude of the impact that these events have on children and their loved ones that led doctors at the Nemours Children's Clinic and others practicing at Sacred Heart Children's Hospital to develop additional and expanded support for those served by them," said Dr. Rex Northup, chief of pediatric critical care at Nemours Children's Clinic and co-medical director of Sacred Heart Children's Hospital. "It is intended that this model will evolve to better meet the needs of those served and will eventually expand throughout the region in order to be available to all those needing these services."
The pediatric palliative care program is more than simply hospice or end-of-life care. The program is based on service models developed and promoted by the Initiative for Pediatric Palliative Care and other organizations. The service at Sacred Heart Children's Hospital will partner with Nemours Children's Clinic, Florida Department of Health Children's Medical Services, Partners In Care/Together For Kids and other organizations as needed to help serve these families. It is intended to minimize the impact of any potentially life-threatening disorder by providing increased and expanded support for children and families as they contend with the demands of coping with and adapting to life with a seriously ill child. The intent is to realistically deal with the disease and its impact on the child and the entire family but to do so in a way that maximizes life beyond the boundaries of that illness. In short, to celebrate life to the fullest extent possible in spite of the limitations of whatever burdens placed by the disease and its management.
Unlike hospice, this service will be initiated early at the time a potentially life-threatening diagnosis is made. The service at Sacred Heart Children's Hospital includes full-time, specially trained pediatric palliative care nurses, nurse practitioners, social workers, therapists, physicians and others who will work with the children, their families and loved ones.
According to one of the participating physicians, Dr. Jeff Schwartz, a pediatric cancer specialist, "It is actually hoped that the majority of patients (such as those with childhood cancers) will be cured and will 'graduate' from the program. The reality is that not all children will be cured or even stabilized in their disease process and some children will eventually pass away. Even then, the palliative care service will continue to work with those children, their families, their doctors, hospice and others as appropriate during the time of end of life care and beyond to help provide support through this ordeal."
For more information on the Pediatric Palliative Care Program, contact Randal Hamilton at Sacred Heart Hospital, 416-2895, or Jeff Schwartz, MD, at Nemours Children's Clinic Pensacola, 505-4790.
