Pediatric palliative care: Building memories that last a lifetime

February 15, 2022 | by Stephani Monhollon
Pediatric palliative care: Building memories that last a lifetime

It is often presumed that an expectant mom will experience a routine pregnancy and delivery and take home a healthy baby. Unfortunately, that’s not always the case.

There are times when a developing fetus faces a sorrowing medical diagnosis with unlikely survival, such as anencephaly or chromosome abnormalities. The reality that their baby may not survive long outside the womb leaves parents and families devastated.

When babies are born under these circumstances, a pediatric palliative-care team can make a tremendous difference by helping parents navigate through the intricacies of the situation. They focus solely on providing continuous comfort and care to the babies and their families, helping ensure every moment they have together is memorable.

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Goals of comfort care

In the neonatal intensive care unit (NICU), palliative care means transitioning a baby from lifesaving critical-care interventions to “comfort care,” with the understanding that any interventions previously believed to be lifesaving will not change the outcome of survival, according to Melinda Hendrickson, M.D., a neonatologist with Mountain States Neonatology, part of the Pediatrix® family of practices, and member of the pediatric palliative care team at Saint Alphonsus Regional Medical Center in Boise, Idaho.

“Goals of traditional medical care are redirected to comfort care, which provides warmth, enteral nutrition, pain management and simple treatments, such as oxygen, for perceived distress,” said Dr. Hendrickson. “The emphasis of comfort care is unrestricted parent-infant interactions and bonding.”

The Saint Alphonsus pediatric palliative care team, known as PACT (pediatric advance care team), is multidisciplinary, primarily comprising a palliative care physician, palliative care and bereavement coordinators, maternal-fetal medicine specialists, neonatologists, pediatric hospitalists, labor and delivery and NICU nurses, case managers and social workers.

Once the baby is delivered, the PACT team’s primary objectives are to keep the baby comfortable while taking care of many stressors for the parents and family so they can focus on their time with the baby with as few external disruptions as possible.

A collaborative care plan

Prenatal PACT consultations are offered to families whose babies have life-limiting diagnoses. Typically, the maternal-fetal medicine specialist or a bereavement coordinator will contact the neonatology office to request a palliative-care consultation.

After an extensive chart review, the neonatologist will meet with the expectant parents, generally accompanied by a bereavement coordinator.

“My approach is to listen to the parents,” said Dr. Hendrickson. “I want to learn about them. I ask many questions to clearly understand what is valuable to them as parents and what types of memories they want to treasure for the rest of their lives regarding their unborn baby. I create a feeding/nutritional plan and support the mother if she wants to provide colostrum or breastfeed to comfort her baby. I try to discover if the parents want other family members involved or if they want photographs, handprints/footprints, hand casts, to give the baby a bath, a special outfit or blanket for the baby, spiritual/religious support and so on. Parents want reassurance that their baby will not experience pain, and I discuss options for pain and agitation management.”

After creating a plan with the family, the neonatologist connects with the pediatric hospitalist to share the comfort-care plan. Notes from the consultation are placed in the baby’s electronic medical record and sent to any referring providers to inform all involved parties of the situation and the family’s wishes. When the mother arrives at the hospital for delivery, the neonatologist and pediatric hospitalist are notified and begin preparing for the baby’s arrival.

Honoring parents’ wishes

While delivering a baby with little chance of survival seems incomprehensible for most, it’s a reality for many parents. Palliative care is another way medical professionals can make a significant difference for patients and their families. In addition to providing comfort care and support for the baby and family, palliative-care specialists help parents make informed decisions and give them ideas they may not have thought about during these overly stressful times, such as ways to make every moment with their child count regardless of the circumstances.

After discovering their baby has a life-limiting condition and survival is unlikely, many families want an opportunity to create some good memories during the time they have with their child. Learning what the parents value and creating a care plan to honor their wishes is essential to their journey and helping them find joy in a heartbreaking situation.

“The common goal for these families is to avoid separation from their baby after birth, forego any painful procedures and gain reassurance that their baby will not suffer or experience pain,” said Dr. Hendrickson. “Families can focus on their baby when they know the medical team is aware of their goals and a solid plan is in place to provide comfort care.”

Intensive-care providers are trained to save lives. They perform practice codes, resuscitations and medical-emergency drills in preparation for medical crises. Shifting the goal to comfort care requires a different skill set and mindset.

“It is emotionally draining for all involved with these babies and their families,” said Dr. Hendrickson. “Knowing that a group of people is committed to this type of care plan gives all of us the emotional support to do our very best work every day. It is very rewarding.”

During these difficult times, Dr. Hendrickson believes it’s essential to be open to parents’ emotions and honest about the situation they face with their unborn baby. They need a special kind of support and compassion that helps them through their darkest times and reassures them that palliative care doesn’t mean giving up on their baby.

“Comfort care is not giving up,” said Dr. Hendrickson. “It’s not meant to take away hope. Comfort care helps build happy memories and give hope to families who face the worst news about their unborn child. We don’t focus on the projected outcome; we provide unconditional care and support when our patients and families need us the most.”