Pediatric Hospice Care
Hospice care is a way to care for your child when curative therapy is no longer effective, when comfort and quality of life becomes the focus.
Pediatric Hospice Care Services & Resources
Hospice is a bundle of services delivered by the same interdisciplinary team as your Pediatric Palliative Care team with some additional resources and is an extension of palliative care with a special attention for end-of-life planning and care. Hospice most commonly provides care in the home and scheduled visits can be more frequent to meet the needs of child and family. Hospice benefit provides any medications related to comfort and terminal illness, supplies and medical equipment needed to keep the child comfortable and as functional as possible.
When a child has a life-limiting illness, the Lightways Pediatric Hospice and Palliative Care Team can help.
About Pediatric Hospice Care Enrollment
For Hospice enrollment, and to qualify for insurance coverage (private or Medicaid) a physician must certify that a child’s life expectancy is 6 months or less if the disease follows its natural course. However, this 6-month time limit can be, and is often renewed because there is much uncertainty about predicting life-expectancy for children with advanced illness. Children often outlive their original prognosis, and pediatric hospice teams are prepared to meet the needs of children and families facing end of life over the longer term.
When a child is enrolled in hospice care, our specialized hospice team takes on a more primary role in a child’s care. Families can choose to have their child’s primary subspecialty doctor or the pediatric hospice doctor as the child’s managing doctor but either way, there is close communication between the hospice team and a child’s subspecialty team about the plan of care.
How Pediatric Hospice Care Supports your Family:
- Continues all aspects of pediatric palliative care, with attention to the physical, emotional and spiritual needs of children and families facing advanced serious illness.
- Provides medications, supplies and equipment for all aspects of comfort focused care.
- Central and primary role is comfort and symptom management with weekly (sometimes daily) nursing visits to meet the child and family needs.
- Access to CNA, Child Life Therapy, Social Work, Chaplain, Music Therapy and Massage Therapy.
- Access to respite care services in our Inpatient Unit.
- Access to grief and bereavement support.
Lightways Pediatric Care FAQs
What is pediatric palliative care?
Pediatric Palliative Care is frequently confused with end of life or hospice care. Actually, palliative care is a resource for any child living with a serious illness and involves support for the sick child and the entire family. The goal of pediatric palliative care is to help a child live as well as possible for as long as possible.
Pediatric Palliative Care can be helpful as early as diagnosis and at any point during a child’s life with serious illness. The term “Palliative Care” refers to a wide-range of care that complements disease-directed care by addressing physical, emotional and spiritual needs of a child and family. Pediatric Palliative Care providers do not take the place of a child’s primary medical team. They work alongside a child’s family and primary treatment team and provide an extra layer of symptom management and communication support for a child and family in the home.
How is Pediatric Palliative Care different from hospice care?
Pediatric Hospice Care is a way to support and care for your child when cure for your child’s disease is no longer possible, and their life expectancy will be shortened. Hospice is a bundle of services delivered by the same interdisciplinary team as an extension of palliative care, with special attention to end of life planning and care. The mission of hospice is to maximize your child’s comfort, control of symptoms and enhance their function and quality of life.
Can my child continue with their doctors and treatment plans if they are in Palliative Care or hospice?
Children in palliative care programs continue with their same doctors, clinic visits and subspecialty care. Pediatric Palliative Care Teams work in partnership with a child’s treatment team. Palliative Care Teams can help be the ‘eyes and ears’ at home for your doctors to help keep your child’s symptoms controlled and in some cases help take care of issues before they require a clinic or emergency department visit.
Children enrolled in hospice can continue to see their regular doctors, and families often choose to have their doctor or the pediatric hospice doctor be their primary doctor. In some cases, children can also continue to pursue disease treatment while in hospice. No matter what choice you make for your child, there is always close communication between the hospice team and your child’s treatment team about how your child is doing and what they need.
If my child has hospice care, won’t that mean we are ‘giving up’?
Hospice does not replace your child’s medical care. Hospice becomes an important addition to your child’s care, and can improve their comfort, mood and energy. When children feel better, they can live better. Studies show that when symptoms are controlled and patients have their physical, emotional and spiritual needs met, they tend to live longer.
PEDIATRIC CARE QUICKLINKS: Pediatric Palliative Care | Pediatric Hospice Care | Pediatric Care | Child Life Specialists