Whether you have recently learned that your child is living with a serious illness (like cancer or a genetic disorder), or you received the diagnosis years ago, it is never easy to hear this news. Plus, running around from doctor appointment to doctor appointment is tiring and stressful. It can make you and your family feel out of control—at a time when you want to be in the driver’s seat.
Pediatric palliative care can help.
What is pediatric palliative care?
Pediatric palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people living with a serious illness. Palliative care focuses on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the child and the family.
A specially-trained team of doctors, nurses, social workers, and other specialists work together with the child’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage of an illness. It is appropriate for neonates, perinates, infants, children, adolescents, and young adults, and it can be provided along with curative treatment (like chemotherapy).
Palliative care is based on the needs of the child, not on the child’s prognosis. Getting palliative care early is best, to help the child and the family from the start.
What types of illnesses does it address?
Pediatric palliative care can help any child living with a serious illness, including genetic disorders, prematurity, neurologic disorders, cancer, heart and lung disease, and more. Pediatric palliative care specialists focus on the whole child and how your child’s illness and treatment affect the entire family. Working together with your child’s doctor, the palliative care team provides an extra layer of support through:
- Treatment of your child’s symptoms, including pain, fatigue, shortness of breath, stress, anxiety and more
- Communication and guidance throughout treatment decisions, making sure they are in line with your family’s values, traditions, and culture
- Communication and coordination with all other doctors
- Support for the family and the siblings every step of the way
At the end of the day, remember that including palliative care with concurrent treatment is very important, to provide your child and family with the most complete medical care possible.
How and where to get palliative care
Make sure to ask your child’s doctor (such as the oncologist or pediatrician) for a referral to palliative care. As a family, you will then meet the pediatric palliative care team at the hospital or at a clinic appointment. Follow-up visits can also take place in either of these locations. However, many palliative care teams will continue to offer care and support over the phone and with home visits. Home tends to be the most comfortable and safest place for children.
How Can I Learn more?
If you would like to learn more about pediatric palliative care, click here or visit getpalliativecare.org.
Also, click here to listen to parents talk about how palliative care helped their son, Ryan, and their family.
GetPalliativeCare.Org is an online resource for patients and families that focuses solely on providing information on palliative care from the point of diagnosis.