The New Frontier in Pediatrics and Pregnancy: Perinatal Hospice Care

HealthBond - Sumner

The New Frontier in Pediatrics and Pregnancy:  Perinatal Hospice Care

San Diego Children's Program
Hospice care for children can extend far greater than just "Pediatric Patients" which is often perceived and misunderstood as children dying from the most obvious diagnoses of cancer or AIDS. There are others less obvious who need and deserve the special attention of those trained and committed to the experience of children.

A comprehensive program for children (The Children's Program verses a "Pediatric" Team) can include the following: infants and newborns, children, adolescents and even young adults (depending on the circumstances and needs); children experiencing the serious illness and anticipated death of an adult hospice patient or a sibling; children in school settings experiencing serious illness loss and grief.

Children's Program of San Diego Hospice:

Pediatric Hospice Patients
Serving infants, children and adolescents, young adults. 0 - 21 years of age.

"Early Intervention Program": Perinatal Hospice. Support to families during the pregnancy through birth. Their babies have life-threatening conditions.

Includes extended support system of patient - outreach to classroom, faculty, school.

Adults 21+ case by case based on circumstances.

Children of Adult Hospice Patients
Counseling, resources and consultation available for children in the adult San Diego Hospice patient's families.

For children experiencing the life threatening illness of a parent, grandparent, or other relatives. Guidance and education for adults who care for them.

Children's books, therapeutic games and activities

Play therapy.

Art therapy.

Memory making/ keepsake activities

Community Outreach and Education
Creating a bridge between hospice, the school community and families.

Individualized presentations or training based on a specific situation or a general request to support the students/faculty.

Collaboration with school nurses, teachers, counselors, school psychologists and other faculty on issues related to children experiencing loss, grief, serious illness-their own or a loved one.

Provide resources and access to materials on the needs and concerns of children experiencing serious illness, loss and grief.

Below is a model for the San Diego Children's Program:

Early Prevention Program is for families experiencing a severely troubled pregnancy in which the baby is not expected to survive long after birth (i.e. hours, weeks, or even months). The program is an extension of the successful hospice care already being provided to infants and newborns with severe congenital/chromosomal or cardiac anomalies, CNS disorders and rare syndromes.

Upon receiving a prenatal diagnosis, which confirms a life threatening or potentially life limiting condition, families have a small window of time to decide on their course of action; whether to continue the pregnancy or terminate it. Those who choose to continue the pregnancy, find themselves basically alone to prepare themselves, and other children in the family, for the baby's complications and probable demise. The Children's Program has the expertise and experience to assist the parents with this process. Families have found their way to us after days to weeks of searching for help, guidance and support in planning for the trying time of anticipation and concern ahead. They have discovered a great void in supportive services available to them after conferring with the women's physician/healthcare provider. The Children's Program will meet with expectant parent(s) to explore the needs and wishes of their families. Together with a nurse, social worker, and/or chaplain, a plan will be developed to meet personal goals for the pregnancy and the anticipated brief life of their baby. The emphasis is on counseling regarding psychosocial, spiritual, and educational needs of the entire family - including parents, other children in the family, and grandparents. Perinatal nursing care is excluded from this program. Some of the services available to these families include:

Assist parents in formulating a personalized plan for how to utilize resources and cope with the time of pregnancy.
Help create the "Birthing Plan" with parents and involved healthcare providers, which may include: their preferences on intervention for the baby at birth; information on our team's involvement with the family, rituals or activities they desire with their baby.
Discuss care options with parents and healthcare providers, which include: involvement during baby's inpatient stay, transfer to Inpatient Center, discharge planning whenever possible, to allow them to "welcome" baby home with our Hospice Program's assistance.
Help to address the emotional needs and concerns of other children in the family.
Assist in creating ways to celebrate and "welcome" the baby at home or in the hospital, working in collaboration with L/D staff.
Provide guidance and encouragement in finding hope and comfort amidst their uncertainty and grief.
Assist with planning final arrangements, memorial services and planning good-byes at hospital or at home, as appropriate.
Bereavement support for all family members and others impacted by baby's death.

The "Needs Assessment" process for implementing the Early Intervention/Perinatal Hospice Program should be reviewed to identify gaps in the existing community services and highlights the under-served populations of patient/families as well as professionals needing our hospice expertise or counseling services. Data should include death statistics by age and diagnosis and a review of services from other related healthcare and community providers.

Meeting the challenges of fitting this unusual program into existing hospice data/information systems, documentation, consents and actual covered services should be discussed. It forces the agency and team to take a step "out of the box" to generate new assessment, admission, and consent forms; delineate covered and non-covered services, seek avenues for potential funding sources for the psycho-spiritual counseling provided, prepare for on-call coverage and response, develop educational and resource materials; internal and external education on the program.

Landmarks for Memories is ways in which the team can assist families (and hospital staff when indicated) in creating as many keepsakes and treasures as possible in the time prior to, during and after the baby's birth.

When there are children in the families of our Hospice patients, it is important that we try to facilitate a supportive environment that will help them cope with the loss and grief they face. By creating some concrete and tangible reminders of that loved one, we can plant seeds for healing for the children in years to come. The activities listed may be appropriate if it is a child dying or an adult with children who will be impacted by their death. As a child goes through different developmental stages, they may face the loss again and need to integrate it into their lives in new ways. The ideas listed below may help you find personal ways to create "landmarks for memories" for the children who will live on after a loved one dies, whether it's a sibling, parent, grandparent or close friend, etc. By working on even one of these projects it helps them realize that their connection with that person is lasting through memories and tangible, concrete reminders. Please talk with your Hospice Team for ways to accomplish your individual goals and family needs. Everyone participating in these activities can benefit from them and find meaning in the experience.

Creative Ideas for keepsakes (click here)

Finally, address strategies to pursue funding through grants, restricted funds, and third party reimbursements. It is important to consider your own community's needs and get county data on deaths and specific needs first. There are statewide grants or smaller grants from corporations to cover cost of materials and activities with children, books, paints, paper, therapeutic games, activities, art materials, and puppets etc. Also Junior League may be a possibility or local groups who support activities for children are very useful relationships to build.

Download Sumner's Presentation - When Joy Turns to Sorrow:Brief Lives that Touch Many Hearts
Children's Program (click here)

Lizabeth Sumner graduated from Marquette University College of Nursing. She is celebrating over 21 years in the specialty of Hospice Care. Her hospice experience includes staff nurse and management roles in both Inpatient and Home-care settings, with a combination of adult and pediatric experience.

Sumner was instrumental in launching the Pediatric Program at San Diego Hospice, a pioneer program in the area of Pediatric Hospice, supporting children through grief and loss, program development, and pediatric pain and symptom management. She is the Children's Program Director, creating innovative services and programs to meet the needs of families with life-threatening children, as well as perinatal hospice and children of adult hospice patients.

Sumner has spoken at many local, regional, national, and international conferences and initiatives, and has been published in nursing journals, textbooks, several newspaper articles, and interviews. She is married and the mother of 2 young daughters.

September 14, 2000