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
- 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.