For more than 30 years, children with life-threatening or life-limiting illnesses have received special care at Hospice of the Bluegrass. Since 1997, children have also had access to Daniel’s Care, a robust and nationally recognized Hospice program that helps infants, children, adolescents, and their families deal with the day-to-day struggles of living with a life-threatening illness or condition.
Hospice of the Bluegrass is a nationally recognized program that began with home visits and expanded to include collaboration with the Kentucky Children’s Hospital and the UK College of Medicine to help develop pediatric palliative services.
Some common diagnoses for Daniel’s Care patients include neurodegenerative disorders, cancer, inoperable heart defects, and severe birth defects. Because Daniel’s Care is affiliated with Hospice, parents are sometimes concerned that participating in the program means giving up hope. That is never the case. With Daniel’s Care, all current treatments may be continued, and do-not-resuscitate orders are not required. This was also recognized by the Patient Protection and Affordable Care Act (PPACA), which became effective in 2010. The PPACA requires state Medicaid programs to pay both curative and hospice services for children under the age of 21.
Pediatricians or primary care physicians refer patients to Daniel’s Care. Each child is served by a team of professionals. Each member of the Daniel’s Care team has received specialized training to care for pediatric patients. Team members may include a physician, pediatric nurse, chaplain, social worker, expressive therapist, bereavement counselor, home care aide, and volunteers. Daniel’s Care nurses will come to the patient’s home and help with medical care. Social workers and therapists work with the child and other family members on coping with the illness. Chaplains are available to discuss spiritual questions and issues. Home care aides help with patient care and light housekeeping, and volunteers are available for everything from companionship, running errands, and providing transportation to providing a break for the parent or caregiver.
Daniel’s Care may also provide specialized medical equipment like wheelchairs and oxygen monitors, medicines, and emergency funds for food, rent, and utilities. Daniel’s Care is the only end-of-life pediatric program in northern, central and southeastern Kentucky providing this vital care and support to children with life-threatening illnesses and their families.
In 2010, Daniel’s Care went through its biggest change since its inception – the addition of longer-term palliative care. The change expanded access to children’s hospice care for Kentuckians throughout the north, central and southeastern parts of the state. Daniel’s Care is now able to see children earlier in their prognosis and can offer a continuum of care from labor and delivery to NICU, PICU, and beyond.
Approximately 50,000 children die in the United States each year, but the dynamics of pediatric care are changing as children are living longer with chronic illness. Pediatric palliative medicine is growing as we look to evidence-based and measurable ways of handling complex cases.
Daniel’s Care is available to families with or without health insurance, and services are provided with no out-of-pocket expense to the family. While individual donations and grants have enabled Daniel’s Care to provide for the needs of these children when private insurance, Medicare, and Medicaid are insufficient, additional funding is always needed to ensure that these families continue to receive the medical care, medicines, equipment, and support they need.
For more details or to make a referral, visit www.hospicebg.org or contact Donna Armstrong, Daniel’s Care director, at (859) 276-5344 or (800) 876-6005.
Todd Coté, MD, is Chief Medical Officer of Hospice of the Bluegrass