Finding support

Not long after Katie Tharpe’s infant son died, she reached out to clinicians at Monroe Carell Jr. Children’s Hospital at Vanderbilt to express her gratitude for their care and support and to explore ways to give back.

For months after he was born in 2013, Bryan Tharpe struggled with one health problem after another. He spent his final weeks at Children’s Hospital as doctors searched for the cause of his declining condition.

In addition to intensive care physicians’ efforts to save her son, Tharpe was impressed with the care and attention of a special team at Vanderbilt charged with managing the symptoms of patients with life-limiting illnesses with a focus on improving quality of life.

Tharpe felt helpless as she watched Bryan’s health worsen. But the palliative care team at Children’s Hospital helped her take a step back and understand the bigger picture.

“It was a turning point for me as far as feeling hopeful, hopeful for him not to be in pain,” Tharpe said. “As a parent you never want to see your child suffer. Seeing him like that was the most horrible part of the experience, and they’re not supposed to feel pain if you can help it.”

While patients undergoing palliative care at Children’s Hospital could have a wide range of illnesses, one thing they all have in common is the potential that the condition will take the child’s life.

Although the range of services offered by the team includes working with families on end-of-life care, the scope of the palliative care team’s role goes beyond that.

“A referral to pediatric palliative care is often confusing to families. Many think it means focusing on the end of life or hospice,” Longo said. “A consult to palliative care is appropriate for any child with a serious illness —no matter what age or stage.”

The team typically approaches each family the same way: starting a conversation that helps illuminate the family’s goals and providing a sounding board for families to express their thoughts, fears and emotions. That provides social support and a starting point to help guide families through complex medical decisions.

“We want to hear the parents’ stories,” said Tisha DesPrez Longo, LMSW, the palliative care coordinator at Children’s Hospital. “Tears are OK here.”

Longo works closely with Carey McDonald, MSN, a nurse practitioner on the team who helps devise a treatment plan to address a patient’s symptoms and coordinates with the care provided by other physicians at Children’s Hospital.

For Tharpe, the team’s care and service provided a measure of comfort as she and her husband, Bryan Sr., faced difficult decisions involving end-of-life care.

“Looking back on it now, everyone knows that there was nothing that we could have done to save him,” Tharpe said. “So having palliative care involved was the absolute best thing we could have done.”

After the initial conversation with the team about how she could give back, Tharpe began meeting with fellows and resident physicians rotating through with the team to give them her perspective on losing a child.

“It’s not like I feel like I have any answers for them on how to approach such a sensitive subject,” Tharpe said. “My main goal is just to share the story with them so a new family can benefit from the residents who hear the story.”

Earlier this year Tharpe faced the unthinkable prospect of losing a second child. Soon after her son, Jackson, was born in March, he struggled with breathing and feeding problems.

And for a second time, Tharpe found herself in conversations with the palliative team about end-of-life care in the weeks before he died.

“I can’t say enough nice things about Carey and Tisha,” Tharpe said. “They made so much happen to make sure our family made the most of our time together with Jackson.”

While Jackson was still intubated during his final days, Carey and Tisha arranged for Katie to spend time lying next to her son and holding him.

“I am so thankful for that,” Tharpe said. “Because of them, I have a bit of peace knowing we did all we could to make sure both boys didn’t suffer and that they were so loved.”

Her most recent experience losing a child hasn’t deterred her desire to continue sharing her story with residents and fellows.

“Vanderbilt gave me so much, I wanted to give back,” Tharpe said. “It made me feel like my son wasn’t gone, and he could give back and help.”

The team’s goal is to help patients and their families, like the Tharpes, to get the most out of the time they have while dealing with the illness.

“We work closely with the patient’s primary providers to improve communication, ensuring that all are on the same page in terms of goals and care plan,” McDonald said.

The team takes a holistic approach to care, counseling parents on issues as varied as providing support to patients’ siblings and arranging hospice care if needed.

“The palliative team can get involved at any stage, but we like to build rapport with the family early,” Longo said. “No one wants their child to suffer, and it is our goal to work with a family to lessen suffering from physical as well as emotional pain.”

– by Josh Brown