Everyone looking to expand their family hopes and dreams of giving birth to a healthy child. No one has a child with the expectation of that child being born with, or developing, a life-limiting condition.
When a child has a life-limiting illness, Lightways Pediatric Hospice and Serious Illness Care Team can help.
Hospice and serious illness care for children, from birth to 21 years old, incorporates specific principles and values for the care of seriously ill children and their families. The goal is to enhance the quality of life for your child and family as defined by each child and family unit. Lightways includes the child and family in the decision-making process regarding services and treatment choices to the fullest degree that is possible and desired. It addresses, in a comprehensive and consistent way, the physical, developmental, psychological, social and spiritual needs and issues of children and families through an individualized plan of care. It ensures continuity and consistency of care in all settings where services are provided.
Pediatric hospice and serious illness care provide coordinated home care through an interdisciplinary team which is coordinated by a physician and registered nurse. The team provides medical, nursing, psychosocial, and spiritual care as core services, along with trained volunteers and other services as appropriate. Hospice care for children is also attentive to the needs related to loss and grieving for all concerned both prior to and following death. Nursing services are available 24 hours a day as needed regardless of the setting. Services are increased or decreased depending on your child’s needs.
The Pediatric Hospice and Serious Illness Care Team Includes:
- Primary Care Physician
- Parents & Family
- Pediatric Nurse
- Hospice Medical Director
- Social Worker
- Certified Nursing Assistant
- Medical Equipment Supplier
- Complementary Therapy Services
The grieving process may begin as families deal with the loss of the healthy childhood they anticipated for their child, the potential suffering the child may endure, and the overwhelming difficulties to be faced. These emotions inevitably weigh heavily on the most optimistic of parents. The strain often takes a heavy toll on family life. Brothers and sisters may compete for attention with the life-limited child; parents may disagree about the degree to which the special child deserves their attention. Dealing with a child that can’t speak, hear, breathe properly, walk or achieve many of the milestones parents always look forward to adds to the pressure.
There are people who understand these pressures. Lightways Pediatric Hospice and Serious Illness Care Teams help the family get a break from the relentless needs of a child with a life-limiting condition. Hospice does not take the place of the parent/caregiver, but is available to provide assessment of the child’s condition, work with the physician to provide pain and symptom control, and teach, support, and assist in whatever way will help to lighten the load for the child and family.
Lightways will provide support and education for your family, friends, your child’s schoolmates and teachers. Spiritual support can be provided, as well as contacting the clergy of your choice if that is your wish.
All that is needed for your child to be admitted to the hospice and serious illness care program is a physician’s referral. This allows the team to provide your child and family with as many services as possible.
The care for your child includes:
- Home visits available 7 days/week.
- Pediatric care service area includes the Illinois counties of Will, Grundy, Kendall, LaSalle, Livingston, southern DuPage, southwest Cook, and northern Kankakee counties.
- Expertise in pediatric pain and symptom management and end of life care for infants, children and adolescents.
- Proactive approach to symptom control using the least invasive methods possible.
- Management of enteral (tube feedings) therapy.
- Interdisciplinary Pediatric Team.
- Caregiver education in the care and treatment of your child by the pediatric team.
- On-Call RN available 24 hours a day for questions, concerns or crisis intervention.
- Individualized care plan for each patient & family.
- Interpreter services for non-English speaking family members.
- Coordination of spiritual support by Lightways chaplain and community clergy.
- Continuity of care if your child is hospitalized by communicating with hospital health care team.
- Psychosocial support provided at school when requested for your child’s peers & teachers.
Common Questions About the Pediatric Hospice and Serious Illness Care Program
What type of life-limiting illness is appropriate for care?
There are numerous illnesses/conditions that can be life limiting, such as: cancer, severe genetic disorders, end stage diseases of an organ system (heart, lungs, kidneys, liver, etc.), neurological degenerative diseases (Battens Disease, Spinal Muscular Atrophy, etc.). In other words, any disease or condition (including conditions from traumatic injury) that is so serious, your child will most likely not survive to adulthood may be appropriate for care.
When should care begin?
Care by the Lightways Pediatric Hospice and Serious Illness Care Team should be initiated as soon as it is recognized that your child has a life-limiting illness and the physician has determined the need for comfort care for symptom management and pain control. This early intervention is essential to promote your child’s comfort, as well as to provide spiritual and emotional support to your child and family.
Can my child continue to see the same doctor?
Yes, your child can continue to be treated as before, with the addition of the expertise of the Pediatric Hospice and Serious Illness Care team to assist with pain and symptom control, psychosocial and spiritual needs.
Can my child continue to attend school?
Yes, Lightways encourages the child and family to continue activities (school, vacations, etc.) to promote quality of life.
Is a DNR required to be a pediatric patient?
No, it is not necessary to have a DNR (Do Not Resuscitate order) or POLST (Physicians Order for Life Sustaining Treatment) form in place to be in our care.
How do we get started with care?
Call us at 815-740-4104. We require an order from your child’s physician and we will make that call for you.
How is the program paid for?
Medicaid and many insurance companies will pay for hospice and palliative care. We do not turn away ANYONE because of inability to pay.