Pediatric Palliative Care – Frequently Asked Questions
What is palliative care?
Palliative care can ease the symptoms, discomfort and stress of a serious illness for your child and family. It can also help:
- Ease your child’s pain and other symptoms of illness.
- Help your child’s healthcare providers work together and communicate with one another to support your goals.
- Provide emotional and social support that respects your family’s cultural values.
- Start open discussions with you, your child and your healthcare team about options for care.
Palliative care surrounds your family with a team of experts who work together to support all of you. It is a partnership with people who listen to your preferences and help you think through the care options for your family. They will work with you and your child to make a care plan, and can also help when your child moves from one care setting (e.g., the hospital) to another (e.g., outpatient care or care at home).
Does accepting palliative care mean our family is giving up on other treatments?
No. The purpose of palliative care is to ease your child’s pain and other symptoms and provide emotional and other support to your entire family. Palliative care can help children, from newborns to young adults, and their families at any stage of a serious illness. Palliative care works alongside other treatments your child may be receiving. In fact, your child can start getting palliative care as soon as you learn about your child’s illness.
How do you know if your child or family needs palliative care?
Children living with a serious illness often experience physical and emotional distress related to their disease. Emotional distress is also common among their parents, siblings and other family members. If your child has a genetic disorder, cancer, neurologic disorder, heart or lung condition, or another serious illness, palliative care may help reduce pain and enhance quality of life.
Ask your child’s doctor about palliative care if your child or any member of your family (including you):
- Experiences physical pain or emotional distress that is not under control.
- Needs help understanding your child’s health condition.
- Needs support coordinating your child’s care.
How can our family get palliative care?
The palliative care process can begin when your child’s doctor 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.
If we start palliative care, can my child still see the same primary healthcare provider?
Yes. Your child does not have to change to a new primary healthcare provider when starting palliative care. The palliative care team and your child’s doctor work together to help you and your child decide the best care plan for your child.
What if my child’s healthcare provider is unsure about referring us?
Some parents are afraid they might offend their child’s current healthcare providers by asking about palliative care, but this is unlikely. Most healthcare providers appreciate the extra time and information the palliative care team provides to their patients. Occasionally, a clinician may not refer a patient for palliative care services. If this happens, ask for an explanation. Let your child’s doctor know why you think palliative care could help your family.
Who pays for palliative care?
Many insurance plans cover palliative care. If you have questions or concerns about costs, you can ask your healthcare team to put you in touch with a social worker, care manager or financial advisor at your hospital or clinic to look at payment options.
How can my child’s pain be managed?
The palliative care team can bring your child comfort in many ways. Treating pain often involves medication, but there are also other methods to address a child’s discomfort. Your child may feel better with changes like low lighting, comfortable room temperatures, pleasant smells, guided relaxation and deep breathing techniques. Your child may welcome additional activities like video chats, social media, soothing music, and massage and art therapy that may help decrease pain and anxiety.
If your child has an illness that causes pain that is not relieved by drugs like acetaminophen (Tylenol®) or ibuprofen (Motrin® or Advil®), your child’s palliative care team may recommend trying stronger medicines. There is no reason to wait before beginning these medications. Should your child’s pain increase, the dose may be safely increased over time to provide relief.
Pain relief can be offered in a hospital, at home or in other healthcare settings. Your palliative care team will partner with you and your child to learn what is causing discomfort and how best to handle it.
Need more information?
Call 321.841.2245 to contact the palliative care team.