Pediatric & Perinatal

The Subspecialty of Perinatal & Pediatric Palliative Care

Definitions

Palliative Care:

Specialized medical care that is provided to a patient of any age, with a serious illness at any stage. It is designed to improve a patient’s quality of life, and that of the patient’s family by providing relief from the symptoms and stresses of the patient’s illness. It may be provided alongside curative treatments in primary and specialty settings, and is based on the needs of the patient, not the prognosis. It is delivered collaboratively in any setting, by a specially trained interdisciplinary team that includes healthcare practitioners, nurses, social workers, spiritual care providers, and other patient support providers.

Perinatal Palliative Care:

Perinatal Palliative Care (PPC) is interdisciplinary coordinated services offered to women who continue the pregnancy with a life-limiting or life-threatening fetal diagnosis from the time of diagnosis through the neonatal period and beyond1. The goal of this team is to provide support and continuity of care throughout pregnancy, delivery, and the postpartum and neonatal periods 2 . The focus is on maximizing quality of life and comfort for newborns. It focuses on alleviating suffering and honoring patient values. It can be provided concurrently with life-prolonging treatment2.

Pediatric Palliative Care:

The active, comprehensive care of a child’s body, mind and spirit along with support for the family. It begins when illness is diagnosed and continues regardless of whether a child receives treatment directed at the disease. Health providers evaluate and work to alleviate a child’s physical, psychological and social distress. It is provided by a broad interdisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centers, and wherever a child calls home3.

According to the National Hospice and Palliative Care (NHPCO) 2023 Pediatric Facts and Figures report4, of the 148 children’s hospital in the 2020 Children’s Hospital Association registry, 119 reported having a pediatric palliative care program. Finding a program whose culture is trained in this subspecialty improves child directed care, family directed care, healthcare provider directed care, advance care planning, and shared information5.

How it Differs from Adult Palliative Care

(While) the broad definition of palliative care encompasses the care provided to perinatal and pediatric patients, this subspecialty delivers palliative care differently because of1

  • Varied cognitive abilities and emotional maturity of the child or adolescent
  • Differences in emotional and psychological issues regarding seriously ill children
  • Necessity of dealing with the child, the parents/caregivers, and, in some families, siblings, grandparents, or other close family members
  • Authority for decision-making about care resides with the parents, not the child
  • Differences in the causes of life-threatening illness, with related differences in palliative care needs

The Pediatric Palliative Care Continuum

Perinatal Palliative Care

Most pregnancies will result in a healthy newborn, however, with modern prenatal diagnostics, there are times when concerns are identified. In these cases, the mother will be referred to Maternal Fetal Medicine (perinatology) for specialized care of the mother and fetus. When a life-limiting condition is identified, a perinatal palliative care team may be consulted to work with the perinatologist, the pregnant patient, and their support person throughout the pregnancy. This specialty interdisciplinary team generally consists of a provider, nurse, social worker and chaplain.

They will share the diagnosis, likely prognosis and options for care with the mother. Options for care may range from pregnancy termination to curative treatment after the birth. In getting to know the mother, her hopes, fears, worries and values will be discussed to create goals for care for the fetus and newborn that reflect what matters most.

The perinatal team will have ongoing contact to offer physical, emotional, spiritual and psychosocial support to the mother and her support person(s) throughout the pregnancy and immediately after. This includes bereavement care when appropriate.

Goals for care of the mother and fetus will be identified and written in a birth plan. The birth plan is a communication tool for all the healthcare professionals working with the mother during the pregnancy and birth- a playbook of sorts on what matters most to the mother for her baby’s care. This plan will be reassessed as new information becomes available during the pregnancy and after the baby’s birth. Plans vary but some common components of a birth plan may include2:

  • Preferred terminology- baby, pregnancy, fetus, name (if known)
  • Does the mother want fetal monitoring
  • Care of the newborn-provisional (subject to reassessment if a different diagnosis or prognosis results from birth)
    • Skin-to-skin contact
    • Hydration
    • Feeding and Lactation
    • Managing respiratory distress
    • Pain control
  • Who will attend the birth and their role
  • Rites or Ceremonies
  • Rooming in

Once the baby is born, a smooth transition of care occurs. Just as the baby transitions from perinatologist to neonatologist to pediatrician, the palliative care team turns from perinatal to pediatric palliative care.

Pediatric Palliative Care

As with any palliative care intervention, pediatric palliative care is best when integrated into the care of any child with a potentially life-threatening condition at the time of diagnosis. Conditions to consider a referral to pediatric palliative care may include6:

  • Progressive conditions for which curative treatment is possible but may fail like cancer
  • Chronic progressive conditions for which long-term palliative care can help maintain quality of life like Duchenne muscular dystrophy
  • Nonprogressive, irreversible conditions with extreme vulnerability to health complications like severe cerebral palsy
  • Progressive conditions without a curative option like trisomy 13

Pediatric palliative care is provided by an interdisciplinary team of physician, advance practice provider, nurse, social worker, chaplain and child life specialist who help ensure the physical, emotional, spiritual needs of the child and support people are met.

Individualized care plans are documented and may include6:

  • Goals of care and how these goals guide decisions
    • Conversations are with parents/guardians and the child as is appropriate to their developmental stage
  • Health care and symptom management plans including:
    • Pain
    • Dyspnea
    • Sleep disturbance
    • Nausea and vomiting
    • Anorexia and weight loss
    • Fatigue
    • Depression and anxiety
    • Delirium and agitation
    • Anemia and bleeding
    • Seizures
  • Location of health care for acute illness
  • Resuscitation status
  • Care plans for a life-threatening event at home and school
    • MOST
    • Comfort One
  • Contact information for individuals with expertise and availability to assist at time of acute events.

Pediatric Hospice Care Reimbursement

40% of South Dakota’s children will be covered under Medicaid during their first year of life8. Overall, 63% of South Dakota’s children are covered under Medicaid4. Many children will be eligible for the concurrent coverage, meaning to get the comprehensive support that the child and family may need to live well with their diagnosis, they may elect to receive hospice while pursuing curative treatment7.

Pediatric hospice is reimbursed differently:

  • Private insurances may differ for palliative care and hospice coverage. Check benefits for each individual situation.
  • There is no specific Pediatric Medicare Hospice Benefit like there is for adults.
  • Children under the age of 21 who are covered under Medicaid can receive hospice care while also receiving curative care- also called concurrent care. This is a federal mandate under the Patient Protection and Affordable Care Act of 2010 allowing the child and family to receive the support of an interdisciplinary team wherever that child calls home while receiving curative treatment. Working with a palliative care team should not determine hospice enrollment.

Referrals

Referrals for Perinatal Palliative Care

  • Sanford: Referral for perinatal palliative care will come from the Maternal Fetal Medicine Clinic- contact Shelby Ellwein, RN 605-328-4600
  • Avera: Embrace Coordinator contact Sarah Christie, RN 605-322-4428
  • Monument Health: Home Plus Home Health and Hospice- Contact Michelle Sieveke, RN, MSN, Rapid City 605-755-7710; Spearfish- 605-644-4444

Referrals for Pediatric Palliative Care

Sanford Health’s Pain Relief, Integrative medicine, Support and Management of symptoms (PRISM):

  • Dr. Daniel Mark- Board Certified/Fellowship Trained Pediatric Palliative Care Physician
  • Dr. Paulo Niño- Board Certified/Fellowship Trained Pediatric Palliative Care & Pediatric Critical Care Physician
  • Pam Koepsell, APRN, CNS PRISM/Pediatric Palliative Care
    • Consults can be made through the Children’s Specialty Clinic 24/7 on call provider: 605-321-1000

Resources

  • South Dakota Department of Health
  • South Dakota Parent Connection
  • LifeScape Children’s Specialty Hospital
  • Department of Social Services Medicaid Coverage Programs
  • Disabled Children’s Program- Intended for children with disabilities who have medically fragile conditions requiring skilled nursing care in a medical facility if they were not being cared for a home.
  • Family Support 360 Waiver-  Provides personal care 1, respite, support coordination, supported employment, personal care 2, companion care, environmental accessibility adaptations, nutritional supplements, specialized medical adaptive equipment and supplies, specialized therapies, and vehicle modification services to individuals with intellectual disabilities or developmental disabilities ages 0 or older who meet an ICF/IID level of care.
  • Choices Waiver- Provides assistive technology, career exploration, case management, day services, group supported employment, individual supported employment, residential habilitation, shared living residential habilitation, small group vocational support, and specialized medical equipment and drug services to individuals with intellectual disabilities or developmental disabilities ages 0 or older who meet an ICF/IID level of care.
  • Birth to Three- South Dakota’s Early Intervention Program
  • Children with Special Health Care Needs- South Dakota’s Title V program (Department of Health)
  • Strengthening Families Program- state-based program with flexible funds for HCBS services (Department of Human Services)

References

  1. McCarthy, F. T., Kenis, A., & Parravicini, E. (2023). Perinatal palliative care: Focus on comfort. Frontiers in Pediatrics, 11, 1258285. https://doi.org/10.3389/fped.2023.1258285. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10562587/
  2. American College of Obstetricians and Gynecologists. (2019). Perinatal palliative care. ACOG Committee Opinion, (786). https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2019/09/perinatal-palliative-care
  3. World Health Organization. (n.d.). Palliative care for children. World Health Organization. https://www.who.int/europe/news-room/fact-sheets/item/palliative-care-for-children
  4. National Hospice and Palliative Care Organization. (2023, June 28). 2023 NHPCO pediatric facts and figures report released. National Hospice and Palliative Care Organization. https://www.nhpco.org/2023-nhpco-pediatric-facts-and-figures-report-released/
  5. Dombrecht, L., Chambaere, K., Beernaert, K., Roets, E., De Vilder De Keyser, M., De Smet, G., Roelens, K., & Cools, F. (2023). Components of perinatal palliative care: An integrative review. Children (Basel), 10(3), 482. https://doi.org/10.3390/children10030482.https://pmc.ncbi.nlm.nih.gov/articles/PMC10047326/
  6. https://www.uptodate.com/contents/pediatric-palliative-care?csi=d1655a95-94e9-4939-a5c6-b507b1539e4d&source=contentShare
  7. UpToDate. (n.d.). Pediatric palliative care. UpToDate. Retrieved February 19, 2025, from https://www.uptodate.com/contents/pediatric-palliative-care?csi=d1655a95-94e9-4939-a5c6-b507b1539e4d&source=contentShare
  8. South Dakota Department of Social Services. (2023). 2023 Medicaid report. South Dakota Department of Social Services. https://dss.sd.gov/docs/medicaid/reports/2023_Medicaid_Report.pdf