Pediatric supportive care team gives guidance to families

“It’s 12:47 a.m. as I sit here and type the first words to a letter I have put off writing for one year to the day,” pens a grieving father. “In July 2012, my wife gave birth to our daughter. The following day, our baby girl died in our arms. I do not have words to explain our story, honor our daughter or even express how her passing has impacted our lives,” he wrote.

These are the words of an anguished father one year after the loss of his newborn daughter at WVU Children’s Hospital. Facing a situation that no parent ever deserves to be in, he and his wife were forced to make hard and fast end-of-life decisions about their daughter’s care. And they had a skilled, compassionate, and accomplished pediatric supportive care team, CUB Care, by their side every step of the way.

“Our job is to listen and to hear what families are saying and be guided by what their values, beliefs, traditions, and understanding are telling them,” said pediatric palliative care physician Joshua Dower, MD, a 2004 graduate of the the WVU School of Medicine. “We hear, we understand, and we explain the options after listening to what a patient’s family has expressed in advocating for their child. And all of the care and support should be what is best for the child — not always what is easiest. And it’s not always clear.”

Dr. Dower had a vision for what CUB Care could be during his residency when close friends lost their baby at birth.

“In searching for a way to help my grieving friends, I offered to write the death announcement as I thought that would be one of the most overwhelming things to have to do as a father,” Dower said. “I read the letter to my mother, and in the process she disclosed that she had suffered a miscarriage earlier in life. It was then so stark to me that my mom had carried that with her for more than 40 years not having a safe place to talk that through or to be supported.”

Following his fellowship training at Akron Children’s Hospital, one of the original, and few, pediatric supportive care programs in the country, Dower teamed up with family therapist Dolly Ford Sullivan, MPA, MSW, LICSW and nurse coordinator Christy Orndorff, RN, BSN, CHPPN, CPLC, to make up the CUB Care team at WVU Children’s Hospital.

“When Dr. Dower returned to WVU after his residency, I felt that I shared his vision, and I decided I would join him in creating a pediatric supportive care team,” said Orndorff. “I saw the unmet need of helping grieving families and how a bedside caretaker can only do so much during their eight or 12-hour shift.”

The close-knit team works with children and families who have been diagnosed with a life-limiting disease or illness such as cancer or cystic fibrosis. They provide children with comprehensive treatment of the discomfort, symptoms, and stress of serious illness. They also provide bereavement support when a loss is suffered.

Children with serious illnesses suffer from physical, emotional, social, and spiritual pain, and families suffer along with that child. The goal of CUB Care is to help patients with complex medical conditions and their families live as normally as possible, provide accurate and timely information, and support the family in decision making.

“Imagine the journey with a child born prematurely, who may have 120 to 160 days in an ICU,” said Dower. “Imagine what it would take to reframe your life for the next four to five months. And you would need ongoing support, practical advice, and wisdom transferred from other families. So, sometimes we’re the keeper of the wisdom. We check in with the families to see how they’re doing, what are they hearing, and how their transition is going.”

This can mean helping a family choose the right pain medications and care plan, assisting the care team by explaining complicated medical procedures, delivering information to the child and the siblings, and discussing and planning for end-of-life care with the family.

“I do not know what we would have done without Dr. Josh Dower and the rest of the supportive care team at WVU Children’s Hospital,” continues the distraught father. “Dr. Dower’s team was there to take care of all of those needs — even things we were afraid to ask, did not know how to do, or even know about. His team was there to explain things in everyday language, so decisions could be made. Moreover, when impossible decisions had to be made, ones that no parent can truly make under the duress of the unfair situation they are in, Dr. Dower’s team was there to offer objective opinions of what they believed was the right choice given the situation, thus taking some of the burden off of us.”

Not only does the CUB Care team provide support to patients and families, they also offer debriefings and therapy to staff such as physicians, nurses, and other clinicians. “When I started in my position as a clinical family therapist, one of the needs that also struck me was the lack of support for staff,” Ford said. “It was just unconscionable that a healthcare provider would suffer with feelings, and that there was no one to help them process that after a particularly difficult patient encounter. How do you help coach a nurse and let them know that even though it may have just been the most overwhelmingly emotional day of their career that they will be okay? My goal is to be someone who can fill that gap.”

The CUB Care program’s team does not replace the primary care team but works in tandem to provide the most comprehensive approach to the diagnosis. “We treat not only the patient, but the siblings, parents, grandparents, and those who are involved in the daily care needs,” Ford said. “And we see ourselves as not only here for our patients, but also here to support our colleagues.”

The CUB Care team has the support of hospital administration, fellow clinicians, and even of the adult supportive care program director, Alvin H. Moss, MD, medical director of Supportive Care Services. “The CUB Care team in the Children’s Hospital is filling a huge, previously unmet need to help patients, families, and even physicians and nurses deal with the enormous physical, psychological, and spiritual distress created by serious illness in children,” said Dr. Moss. “The team has exceeded all expectations for the number of patients and families it is seeing. It truly is providing an extra layer of support at Children’s Hospital.”

“We work to interlace the family and the healthcare team to weave the basket that will hold the answer to what the family should do,” Dower said. “And more importantly, we help with the why. If they can say that this choice was made because it was the best choice for their child, then they can look back in that mirror again and again and always come up with the same answer – they made the right choice.”