When a child is seriously ill, each person in the family is affected differently. That is why it is important that you, your child, and your family get the support and care you need during this difficult time. A special type of care called palliative (pal-lee-uh-tiv) care can help. Palliative care is a key part of care for children living with a serious illness. It offers an added layer of support based on your unique needs. Whether you are having difficulty managing your child’s condition and care or simply want extra support, palliative care can help.
Palliative care can ease the symptoms, discomfort, and stress of serious illness for your child and family. Palliative care can help with your child’s illness and give support to your family. Your child can get palliative care wherever they receive care: in the hospital, during clinic visits, or at home.
- Ease your child’s pain and other symptoms of illness.
- Provide emotional and social support that respects your family’s cultural values.
- Help your child’s health care providers work together and communicate with one another to support your goals.
- Start open discussions with you, your child, and your health care team about options for care.
Many children need more than relief from symptoms. Palliative care can also help your child:
- Understand a diagnosis
- Communicate effectively with doctors
- Cope with concerns about school and friends
- Find ways to relax and play
Pediatric palliative care addresses serious medical conditions, including genetic disorders, cancer, prematurity, neurologic disorders, heart and lung conditions and others. It relieves the symptoms of these diseases, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping, anxiety and depression. In short, it helps the child and the family improve their quality of life. In Pediatrics, Palliative and Hospice Care are interrelated and the main goal is to help each family define and achieve the best quality of life for them.
Your child does not need to be in hospice to get palliative care. Hospice care focuses on a person’s final months of life, but palliative care is available to your child at any time during a serious illness. Some children receive palliative care for many years. Some hospice programs require that patients are no longer getting treatments to cure their illness, but palliative care is different—it can be given at the same time as other treatments for your child’s illness.
At St. Bernards, we started our Pediatric Hospice/Palliative Care Program in 2018. Our team has a dedicated Medical Director, two full time nurses, a social worker and a Chaplain which, together with the Hospice Director, work with families, PCPs and pediatric specialists to provide the best care at home for our patients. If needed, the team will work with the Neonatologists and Pediatric Hospitalist team to offer inpatient services as needed.
How can our family get palliative care?
If you are currently pregnant and are facing a difficult prenatal diagnosis, please ask your obstetrician about Palliative care and they can refer you to our team. Otherwise, the process can begin when your child’s health care provider refers you to palliative care services. Or, you or your child can ask your provider for a referral if you feel that palliative care would be helpful for your child, your family, or yourself.
For further questions or for a referral, please contact us at 870.207.7655 .