Family-centered care for children with complex, life-threatening, or chronic conditions
“Palliative care no longer means helping children die well, it means helping children and their families to live well and then, when the time is certain, to help them die gently.” - Mattie Stepanek
What is palliative care? Pediatric palliative care is a total approach to care for children, embracing physical, emotional, and spiritual elements.
How does palliative care differ from hospice care? Palliative care is appropriate at any time during an illness and can be provided at the same time as treatment that is aimed to cure. It focuses on quality of life for the child and support for the family during the course of illness.
Palliative care may be right if:
The family is feeling overwhelmed or are having trouble coping, or is grieving the loss of a healthy child
Usual treatments are not working or seem to be hurting more than helping
The child is in the hospital more and more or is becoming harder to care for at home
The child’s condition may be life-limiting
Who can benefit from palliative care? ChildServe’s unique facility, staff, and expertise are particularly suited for children with the following illnesses:
Life-threatening conditions for which curative treatment may be feasible but can fail
Cancer
Complex heart disease
Sudden severe illness
Extreme prematurity
Conditions where early death is inevitable but where there may be long periods of intensive treatment aimed at prolonging life allowing participation in normal activities
Cystic fibrosis
HIV
Chronic or severe respiratory failure
Kidney failure (non-transplant candidates)
Muscular dystrophy
Progressive conditions without curative treatment options
Progressive severe metabolic disorders (Tay-Sachs, leukodystrophy)
Chromosomal disorders (Trisomy 13 and 18)
Irreversible but non-progressive conditions with complex health care needs leading to complications and likelihood of premature deat
Severe cerebral palsy
Prematurity with residual multi-organ dysfunction or severe disability
Multiple disabilities following brain or spinal cord infections or injury
Severe brain malformations (holoprosencephaly)
A team approach The palliative care team’s purpose is to:
Palliative Care
