Frequently Asked Questions
What is Palliative Care?
Palliative Care Mission
To provide compassionate, comprehensive and consistent care to children living with serious illnesses, and their families.
Palliative Care (pronounced pal-lee-uh-tiv) offers active support for patients and their families who are faced with a life-threatening diagnosis. 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. The goal is to enhance quality of life.
Pediatric Palliative Care Team is composed of but not limited to: family member, pediatric palliative care doctors, nurses, social workers, chaplains, child life specialists, music therapists, physical and occupational therapists, pharmacists, and nutritionists to ensure the child and family receive as much support as needed and desired.
When can I know if Palliative care is right for my child?
Palliative Care might be right for your family if:
- Your child is in the hospital more and more or is becoming harder to care for at home
- Usual treatments are not working or seem to be hurting more than helping
- You are feeling overwhelmed or are having trouble coping
- The doctors have told you that your child’s illness could or will lead to an early death
Who besides my child can benefit from Palliative Care?
Everyone is involved. Families are the focus of Palliative Care. The team will work with you, your child, and your child’s brothers and sisters. They can even work with your child’s school or with other people that are important to your family.
Who provides Palliative Care?
A team of experts includes pediatric palliative care doctors, nurses, social workers, chaplains, child life specialists, music therapists, physical and occupational therapists, pharmacists, and nutritionists. Others may also be involved.
Do I have to change doctors?
No. The Palliative Care Team works with your primary care doctor and the specialists involved in your child’s treatment.
Does insurance cover Palliative Care?
Most insurance plans cover all or part of Palliative Care, and many of the services are free. If costs concern you, a social worker can help.
Where is Palliative Care provided?
Palliative Care is provided wherever it works best for you. Visits are made to your child and family in the hospital, at clinic appointments and also in the home.
Palliative Care another name for hospice?
No. Though hospice can be one part of Palliative Care, Palliative Care can begin at the time of diagnosis of a serious illness. It is not limited to end-of-life care.
Clinicians keep asking me the same questions over and over;
what can I do instead of screaming at them?
Continuity of Care/Teamwork
It takes a village caring for our medically fragile children. Each change of shift or new environment we encounter we have to answer the same questions. We have designed a medical history template (MS Word file) to help keep medical teams on track with health history as well as alliviate stress placed on parents who are struggling to keep it all straight.
Prepare a medical background on your child. The doctors will LOVE you and more importantly, they will RESPECT you as part of the medical team.
- Keep the allergies in bright red so there are no mistakes.
- Make multiple copies for home and hospital.
- Incorporate pictures to encourage everyone to view your child as a person, not just a patient.