LEXINGTON, Ky. (Aug. 7, 2019) – Most parents don't want to think about the unthinkable. The image of their child suffering from a debilitating injury or serious illness is a harrowing one, and unfortunately for some parents, the unimaginable becomes a reality. When parents have more questions than answers and face an uncertain future, the Pediatric Advanced Care Team (PACT) at Kentucky Children's Hospital can step in to assist families during a difficult time.
PACT provides palliative care, focusing on improving quality of life and relieving symptoms for patients with serious illnesses. The diagnosis of an illness can upend the life of not only the patient, but the lives of the whole family. In conjunction with the patient's care team, the palliative care team helps families understand the diagnosis, the long-term impact of the illness, and talks them through any major decisions parents would need to make.
"We do a lot of listening, that's the crux of what our team does," said Dr. Lindsay Ragsdale, head of the PACT. "We sit down and listen, and ask the families, what do you know of the diagnosis so far? What have the doctors told you about what the future looks like? What are your biggest worries? Your hopes? What do you hope for a year from now, or five years from now? If you have a short time with your child, what do you want that time to look like? We help paint the picture of what things will look like, and families can plan for what they will need for the long term."
Ragsdale's team — nurse practitioners Adrienne Johnston and Anna Fields, social worker Anna Bullard, chaplain Kathryn Perry and pediatric psychologist Meghan Marsac — can be available to families as early as the first diagnosis to answer questions and help them come up with a treatment plan that aligns with their goals and values. It's important, Ragsdale says, to make families part of the care team. Families can ask for advice or a recommendation and the PACT helps them understand the different options and what services are available.
For Brandon and Jill Embry, the unthinkable became a reality 20 weeks into Jill's pregnancy. A routine ultrasound revealed a significant birth defect in their unborn baby, a daughter to be named Claire. Devastated by the news and facing an impossible decision, the Embrys consulted with Dr. Ragsdale and her team about their options. Would Claire's new life be a series of surgeries interventions that would likely cause her suffering without possibility of sustaining her life or would they let her live as long as she could, peacefully with her parents and brother?
After prayer, deliberation and many discussions with Dr. Ragsdale, the Embrys chose the latter. Claire lived just nine hours, and passed away in her mother's arms.
"Sometimes, after they're born, you don't have all the information you need to make decisions," said Brandon. "If we had intervened with Claire, we might have regretted that. We wouldn't have been able to hold her or spend time with her, she would have suffered, and it would have been all for naught."
"I am so proud of our team, each member stays focused on our families and uses their individual skill sets to help them.," said Ragsdale. "If the families want every medical treatment available, we let the medical team know to please do all the things you know that will help this baby. Or, if there is no cure, and parents don't want the baby to undergo painful procedures, then we focus on family togetherness, take pictures, do art projects and really focus on what those moments are and making memories while we have them."
There can be misconceptions about palliative care and how it differs from hospice care. Hospice care is true end-of-life care, where the focus is on making a patient's passing comfortable and pain free. Palliative care can be implemented at any point in a patient's treatment and focuses on how the patient can have the best quality of life. There was a time, Ragsdale says, when doctors would make the decisions without the input of families. Now, doctors have a better understanding that they aren't just caring for their patients, but for the families as well.
"She didn't tell us what direction to take, but based on her advice, we feel like we made the right decision," said Brandon Embry. "In a situation like that, the decision can be so overwhelming, you need someone looking in that you trust."
"Now the real goal is shared decision making," said Ragsdale. "We say, these are the medical recommendations, these are the family's values, let's do our best to find some middle ground."
Ragsdale's path to palliative care was an unintentional one. During her residency at Kentucky Children's Hospital, she found that she sometimes struggled with finding the right words in situations where she needed to counsel parents through difficult times.
"It's hard, as a human, to say the words to another human that will completely wreck their lives," said Ragsdale. "I didn't feel well-equipped to talk to families when their child was dying. I remember this moment distinctly, of being on-call and thinking, 'There's got to be a better way.'"
After completing a palliative care fellowship at Children's Hospital of Philadelphia, Ragsdale returned to KCH where she helped establish the PACT and worked with other doctors to give them the tools they need to talk to families.
"We have the duty to be honest, and we found that honesty, and telling people what the realities are helps them plan," said Ragsdale. "It doesn't take away hope. Most families appreciate that people are being honest with them so they know how to plan."
The Embrys are among those appreciative families. After the passing of their daughter, they looked for a way to honor Claire as well as support Dr. Ragsdale and her team. An avid cycler, Brandon had the idea of doing a memorial bike ride as a fundraiser.
"After Claire had passed and we had time to process it, we realized that Dr. Ragsdale and her team played a big role in making that as good as it could possibly be," said Brandon. "So we wanted to do something to repay them and thank them. Initially it was a fundraising effort for people to give to a memorial fund, or give to KCH. I wanted to ride to honor my daughter."
They established the Claire Foundation, and held the first Ride for Claire on the day after what would have been Claire's first birthday and raised $15,000 for PACT. The ride is now an annual event to raise money for genetic testing so families can know if they are at risk for birth defects and determine the risk of reoccurrence of birth defects in future pregnancies.
Other families felt moved to support Ragsdale and the advanced care team. Jennifer Mynear, whose son Jarrett created the famed Joy Cart at KCH, started a foundation in his honor and recently endowed the palliative care program with funds to create a program to support the siblings of sick children. Often during a child's illness, so much of the parents' time, energy and attention are diverted away from their other children.
"Dr. Ragsdale wants to provide materials and start support groups for the kids, not just the ones that are losing or have lost a brother or sister, but those who have a sibling who is facing a traumatic situation," said Jennifer. "[My daughter] lived the first 10 years of her life getting shuffled from pillar to post among friends during Jarrett's treatment. Then there's the planned chemo, the radiation, the surgeries, the hospital stays. We've seen thousands of patients and the impact it has on the siblings."
The palliative care program at KCH offers a unique type of support not found at all children's hospitals, and it is designed to align treatment with the family's values and needs. But in an area where happy endings are few and far between, Ragsdale and her team find their inspiration and motivation in the people they serve.
"This job can be difficult, but we draw strength from the families we meet," said Ragsdale. "Their stories, their grace and their resilience is so inspirational to us. They go through what they go through, and they are still so wonderful and gracious, and that's what helps me with my job."