Children’s hospitals don’t advertise their palliative care programs. Nobody wants to think about children living with chronic conditions or dying. Yet being comfortable and surrounded by family is such a crucial part of living, no matter how long that life lasts.
Doernbecher’s palliative care team helps seriously ill children and their families make seemingly impossible decisions. They talk with families about options for their child’s treatment and comfort. They help kids leave the hospital and transition back to their communities – to be home, surrounded by loved ones, and living each day to the fullest.
And they don’t do it alone. Doernbecher’s palliative care program, called Bridges, has received longtime support from Cambia Health Foundation. Thanks to a recent $4 million investment from Cambia, the Bridges Program is growing to support more patients and families facing the difficulty of chronic conditions and end-of-life care.
Why has Cambia been so passionate about pediatric palliative care?
“Nowhere is the field of specialized care more needed than when a child – and his or her family – faces serious illness,” says Peggy Maguire, the president and board chair of the Cambia Health Foundation. “Serious illness is a human issue, not a medical issue, and palliative care impacts all members of the family – how they experience care and grief and growth.”
BORN FROM A NEED
Bridges is the brainchild of Kathy Perko, M.S., C.P.N.P., the program director, who founded it 17 years ago when she started at Doernbecher in pediatric oncology. Perko learned from families who had lost a child that the relationships they built with caregivers at the hospital were important – and those connections were lost when the children went home. What’s more, most community palliative care and hospice providers are trained to work with adults, not children. There was an opportunity to bridge the experience from hospital to home for the youngest of patients.
Perko went on to build the program into an award-winning model for others around the country.
Cambia Health Foundation made its first gift to the program in 2004. The foundation’s biggest gift was in 2015 during OHSU’s Knight Cancer Challenge, when its leaders directed $2.5 million to establish an endowed chair for the program and $1.5 million to establish an innovation fund.
Doernbecher and Cambia Health Foundation leaders celebrated in January 2018 when Robert Macauley, M.D., F.A.A.P., was named the inaugural Cambia Health Foundation Endowed Chair in Pediatric Palliative Care. Macauley, the program’s first medical director, joined Doernbecher from University of Vermont Children’s Hospital, where he established a similar program.
Macauley says most hospitals don’t have such well-established programs. “Between the philanthropic support, the credibility within the institution, the team members, and the thoughtful planning that has gone into the program’s expansion,” he says, “this is a rare place that combines a rock-solid foundation and limitless potential.”
Macauley hopes to work with other hospitals to expand the team’s work in partnering with home health and hospice agencies across Oregon and southwest Washington.
“When these children are discharged from Doernbecher, we’re here for them, and we effectively co-manage or manage those patients at home in concert with the hospice medical director,” he says.
To get a sense of the person OHSU Doernbecher chose to expand the Bridges program, a man trained in both divinity and pediatrics, look no further than YouTube. In an impassioned TedX Talk, Macauley talked about what palliative care is.
“Treating for comfort is just as intensive as treatment for survival,” he said. “And it drives me crazy in my work where someone says we could be aggressive or we can ‘just’ focus on comfort. That ‘just’ is an incredibly insulting and inappropriate word. Because, in palliative care, we focus on advanced care planning, we focus on goal setting, we focus on family support, and we focus on impeccable symptom management for physical, social, emotional, and spiritual symptoms … And it requires expertise and it requires intensive care – focused on a different goal.”
PRENATAL PALLIATIVE CARE
The Bridges team is an integral part of OHSU Doernbecher’s Fetal Therapy Program. In fact, Macauley says, because of its longstanding partnership with neonatal intensive care, more than half of the cases the Bridges team sees involve the NICU.
The Fetal Therapy Program brings together pediatric specialists from multiple areas – neonatology, perinatology, cardiology, neurology, nephrology and more – to talk with parents before a child is born. For children in utero with the most complicated congenital heart problems or issues with brain development, or tiny babies who are born far too early, the Fetal Therapy Program can work with parents to address challenges and establish a treatment plan.
Sometimes, though, no amount of treatment will save a child. It’s those times when the Bridges team is so important to the conversation. To illustrate this, Macauley recalls the case of a mother of triplets who went into labor at 21 weeks – about half term. After talking at length with the parents, he says, discussing data and numbers and probability was not helping them. So he changed the conversation and talked about what treating for survival looks like compared to treating for comfort. Because of that, the parents made a courageous choice – treating for comfort. In the end, he says, instead of having the triplets hooked up to tubes and monitors and getting CPR, “their three children were born one after the other, and they survived for between 21 and 43 minutes, and their parents held them the entire time for their entire lives.”
Maguire says the Bridges program is already one of the best in the country and a source of pride in the community, and she looks forward to what it can become.
“All of us at Cambia Health Foundation are excited to see Dr. Macauley build upon Kathy’s phenomenal contributions to the Bridges program,” she says, “while collaborating with her and other national leaders to seize upon opportunities that will advance the field of pediatric palliative care.”
Read a Q&A with Kathy Perko, M.S., CPNP, Program Director of the Bridges Palliative Care Program and Peggy Maguire, President and Board Chair of the Cambia Health Foundation
Watch Dr. Macauley’s TedX Talk about the importance of pediatric palliative care