After a recent expansion of its pediatric palliative care program, Phoenix Children’s now offers customized, coordinated care to expectant parents who learn their baby has a serious congenital anomaly.

The new perinatal palliative care team connects these parents to specialists who provide education, counseling, medical or surgical treatments, or — when loss is unavoidable — comfort care or hospice care. Their efforts are making a difference among families who previously wouldn’t have had access to resources for coping with the stress, anxiety and fear that often come with an unexpected diagnosis or uncertain outcome.

Refining the Role of Palliative Care

Because perinatal palliative care is a relatively young subspecialty within the field of medicine, its purpose is sometimes misunderstood.

“Contrary to common misconceptions, palliative care is not limited to end-of-life care,” says Billie Winegard, MD, MPH, a fellowship-trained pediatric hospice and palliative medicine specialist who leads the Phoenix Children’s perinatal palliative care team. “It also supports families facing congenital conditions that are survivable but likely to impact their child’s long-term quality of life.”

Dr. Winegard says the concept of perinatal palliative support has grown with advancements in prenatal testing.

“Because we can identify possible life-threatening or life-limiting conditions during pregnancy, expectant parents now have time to prepare and make choices,” she adds. “And while many families want to have a plan in place prior to birth, that process can still cause them to feel distressed and overwhelmed. That’s where our team can really make a difference.”

Providing Meaningful, Multidisciplinary Care

Thanks in part to its renowned fetal imaging team, specialists at Phoenix Children’s often confirm devastating diagnoses ranging from congenital heart defects and central nervous system abnormalities to chromosomal disorders.

From this point forward, families have access to the perinatal palliative care team. Its members include attending physicians, a nurse practitioner, a licensed psychologist, a counselor, social workers and bereavement coordinators.

“Our job is to help people better understand their baby’s diagnosis and prognosis, so they can make medical decisions that honor their family’s unique values, beliefs and cultural traditions,” says Dr. Winegard. “We are here to listen, find out what kind of support they need and then — in collaboration with our Center for Fetal and Neonatal Care — coordinate that support.”

The perinatal palliative care team offers services to suit each family’s goals and preferences. These services include:

• Coordinating information and communication with Phoenix Children’s specialists to learn more about the baby’s condition, potential treatment options and possible outcomes.
• Guidance and support for medical decision-making that align with what is most important to the family.
• Birth planning in collaboration with the mother’s obstetrician or maternal-fetal medicine specialist.
• Mental health support for family members struggling with depression or anxiety.

• Emotional or spiritual support, family counseling, comfort care and goal setting. 

For some families, perinatal palliative support may also require challenging but crucial conversations about end-of-life care, and coordination of services such as hospice care or bereavement counseling.

Making the Most of Limited Time

Although modern treatments help many babies survive congenital defects, sometimes there are limited options — or none at all. When parents can’t, or choose not to, pursue aggressive treatments, the perinatal palliative care team helps them explore their comfort care options and other needs.

“It’s important for families to make the limited time they have with their baby as meaningful as possible, and we help them think through that,” says Dr. Winegard. “Together we create a birth plan that may include a baptism, professional photos or time for siblings to meet the baby. We also make sure the obstetrician and delivery hospital are aware of the parents’ requests.”

Because of her additional role as a pediatric medical director for the nonprofit Hospice of the Valley in Phoenix, Dr. Winegard and her team can also coordinate referrals for in-home hospice care or admission to Ryan House, a pediatric palliative care facility that provides end-of-life care.

Providing Prenatal to Postnatal Support

At Phoenix Children’s, the perinatal and pediatric palliative care teams aim to connect families with the support they need through pregnancy and birth, and beyond.

“Even though we meet and begin helping families during pregnancy, their access to our team doesn’t go away at birth,” says Dr. Winegard. “We know some babies never get to go home, but there are many others whose journey is just starting. And many of those babies eventually come to Phoenix Children’s for medical treatment, surgery or other therapies. When that happens, we’re here to make sure that child has the best quality of life possible, and their family has access to support services that matter.”