KU Kids Healing Place Supportive Care provides the next step in care for youngsters with chronic or life-limiting diagnoses.
KU Kids Healing Place Supportive Care
Meeting the family's needs
The diagnosis of a serious or life-limiting condition, illness or injury in a fetus, infant or child affects the entire family. KU Kids Healing Place Supportive Care is a program that focuses on the needs of everyone affected, and works to ensure that the child's and family's wishes guide the care that they receive. Cultural and religious preferences are identified and honored. A strong emphasis is placed on comfort and quality in each person's life. Children are living longer and better with serious illnesses. And, despite medical outcomes, there are many opportunities to support the mind, body and spirit, encouraging healing in each family member. The care we provide is child centered and family focused.
The following services are provided.
Prenatal and perinatal supportive care
It is confusing and devastating when expectant parents are told that their unborn baby has a serious or life-limiting condition. Often, decisions must be made rather quickly and in the midst of sudden onset of grief. If parents choose to continue pregnancy, KU Kids Healing Place services are started immediately and follow the family throughout pregnancy, delivery, and the baby's life. Some of the available services include: assistance with developing birth plans that reflect the parents' wishes during labor, delivery and the baby's life; help contacting the family's clergy or hospital chaplain; ensuring photographs are taken if desired; helping siblings understand what is happening; making hand and foot molds; and providing information about funeral homes and services. If the baby lives and has ongoing needs, then services follow baby and family. In the event that the infant dies in the first minutes, hours or days of life, bereavement support is offered to the family.
Pediatric supportive care
Being a kid with a chronic or life-limiting illness or injury is not easy. Fatigue, chronic injuries or disability, medication side effects, and the disease process itself may affect a child's family life, school work and social activities. During this time, children and family need support, understanding and action. Excellent medical care is the first step; caring for the whole child and family, however, requires much more.
Palliative care includes ensuring that the physical, psychological, social-emotional and spiritual needs of the child are addressed. Palliative care is needed long before end of life and also throughout life with a serious diagnosis. At KU Kids Healing Place, we begin to provide care for the child and family at the time of diagnosis/injury or when a disease progresses and requires frequent hospitalizations or outpatient care. Growing up is difficult when it is accompanied by pain, physical limitations, frequent school absences, inability to spend time with friends and family in social activities, and worries about what may happen next. Children need support from many people to ensure that they are able to continue the activities that contribute to a healthy self-concept and success throughout life.
There are times when hospice or end-of-life care is necessary. KU Kids Healing Place helps the family with communicating their goals of care for their child. Children and families may want to be closer to home and eliminate frequent trips to the hospital. Hospice care or in-hospital end-of-life support is initiated when the child would benefit from that type of care. Support is geared not only to the child, but also to parents, siblings, grandparents, cousins, friends and all who care about, and for, the ill child.
Children experiencing the loss of a loved one
KU Hospital cares for the most seriously ill patients in the region. As a result, children who are experiencing the loss of a parent, sibling, grandparent or other significant person in their life may be visiting that person for the final time. The child(ren) may need support and guidance in how to handle the visit or in assuring the child's wishes are acknowledged. KU Kids Healing Place provides real-time support for grieving children in the hospital, and resources for families to ensure that bereavement needs of the child are recognized and addressed weeks, months or years in the future.
Supporting the support systems
Sometimes, the best medicine for a child is being back in school, at their place of worship, or in activities with their friends. It may also seem daunting to the caring adults in those environments to consider the child's return. Providing education and support to teachers, school nurses, clergy, coaches and others working with the child may enable those partners to successfully include the child in the environments where they are most comfortable. With education and support, the care that is initiated at KU Kids Healing Place can follow the child to his/her community. Pulling together all of the child's and family's supports can result in a very healthy and happy reintegration into life!
In addition to direct patient and family support, KU Kids Healing Place also offers educational opportunities to KUMC faculty, residents, nursing staff, other health professionals, KUMC students, and community partners who care for the child and family at home. Educational opportunities include:
• Patient specific education to the child's school, daycare, place of worship, coaches, activity directors, Girl Scout or Boy Scout leader, etc.
•End-of-Life Nursing Education Consortium (ELNEC) pediatric training. This training is for nurses and other health professionals, both at KUMC as well as in the community.
•Annual Infant Loss course for KUMC nurses.
Bereavement follow-up support is offered to all families who have an infant or child loss at KUMC. Individual grief support, psychology services for siblings, and two annual Celebrations of Life (the Saturday before Mother's Day and the second Tuesday in December) are offered. In addition, information is available for families who may be seeking grief/bereavement support closer to home.
Sessions are held for residents, students, nurses and faculty after the loss of a child in the hospital. Creating an opportunity for active grief work enables caring professionals to continue providing the best support for infants, children and families.
Pediatric Palliative Care and Infant Loss Committee
This committee meets monthly and is multidisciplinary including physicians, nurses, child life specialist, music therapist, occupational therapist, speech and language therapist, lactation consultant, pediatric education specialist, hospital chaplain and others. The group works to continuously improve supportive care services and to develop educational opportunities for the committee members, as well as hospital-wide. The committee also plans and hosts both annual Celebration of Life services.
Kansas Pediatric Hospice and Palliative Care Coalition (KPHPCC)
The KU Kids Healing Place staff, with the assistance of medical students in the Community Health Project, developed a coalition of pediatric palliative care and hospice providers from across the state of Kansas. The coalition meets monthly, and is committed to improving hospice and palliative care access and services for Kansas children. The initial membership includes a wide variety of professionals. We hope to soon include parents, insurance executives, and state Medicaid staff.
For more information, please contact
Kathy Davis, PhD