FAQs
Welcome to the Community PēdsCare® FAQ page for answers to commonly asked questions about our pediatric palliative and hospice care services.
We understand that navigating care for children with life-limiting conditions can bring many questions. Whether you’re exploring our services for the first time or seeking clarification on specific aspects of care, our FAQ section aims to provide clear insights and support. Below, you’ll find detailed responses to frequently asked questions, designed to help you better understand how we can support your family through compassionate and specialized care.
Community PēdsCare® FAQ
I've known adults in hospice who are enrolled and die in a few days. Does this enrollment in this hospice program mean my child is dying?
Abraham Lincoln once said, “And in the end, it’s not the years in your life that count. It’s the life in your years.” This is our philosophy of ensuring children and families are living their best lives despite a medical diagnosis.
No, hospice is an insurance benefit election. Due to the Affordable Care Act of 2008, children enrolled in Medicaid and Tricare can receive concurrent care hospice, which offers families the insurance benefit of increased support from a community-based team while your child can still pursue treatment and comfort care customized to your situation. Due to private insurance regulations, Children enrolled in traditional hospice only qualify when a prognosis of six months or less is made, when all treatment options have been exhausted, and the Community PēdsCare® team assumes care for comfort measures and ensures a peaceful end-of-life. Most families vocalize how they wish they had enrolled in our services sooner, but stayed away because of the stigma attached to the word “hospice.”
Who is on the interdisciplinary care team?
This support comes from an entire interdisciplinary team which includes but is not limited to a social worker who helps parents navigate resources and process stressors, nurses, nurse practitioners and physicians who collaborate with your child’s hospitalists, clinicians and primary care doctors to ensure comfort and side effects are managed, child life specialists who engage the patients, siblings and their friends in developmentally appropriate play and activities to provide normalcy, education, and memory making opportunities customized to the family. Child life specialists also ensure that the patients’ and families’ wishes are honored and that fun is had. Chaplain support is also available to journey alongside families regardless of religious affiliation or beliefs to find comfort, meaning, and peace during a profoundly difficult time. Music therapy and massage therapy are also available. Pediatric Hospice is not about dying but about living!
What is pediatric palliative care?
It is a specialized medical care for children with serious, life-limiting, or medical complexities. We focus on improving quality of life by helping families in all aspects of their lives, from care coordination with other providers, being a sounding board and resource, and advocating to navigate stressors and unknowns, so that patients can continue to receive curative treatment. Over 80% of our Community PēdsCare® patients are enrolled in palliative care. Most children and young adults attend school, join us at our special events, and live lives to the fullest while gaining support from our interdisciplinary care team and, even more importantly, other parents and patients experiencing similar circumstances.
Where are services offered?
Children do not live in the hospital, and while there is excellent support, Community PēdsCare® services are typically offered in families’ homes for many months and years. We still have several patients who enrolled in Community PēdsCare® when they were born or at the time of diagnosis who age out and graduate at 21 years old, or when families are in a stable place that they no longer need our support. Additionally, our medical staff can accompany you to important clinic appointments, have providers follow up with our patients while hospitalized to ensure family’s goals of care are honored, and through monthly support groups offered at our Mandarin office or online. Child Life Specialists also offer school re-entry support to ensure that the patient, parents, teachers, and students understand how to work together best. Our chaplain often collaborates with faith communities, while our social workers collaborate with community resources.
How much does this cost?
Community PēdsCare® believes that all families are entitled to support. Due to our generous Foundation, families will never receive a bill for any service Community PēdsCare® provides. We receive a per diem for children enrolled in hospice care and a small reimbursement for services rendered from CMS and Sunshine Health, but never out of the family’s pockets. Community PēdsCare® is one of the few programs in the country offering community-based pediatric palliative care to families with private insurance.
We’re here to support you every step of the way. Together, we can ensure your family receives care and support.
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