Taking Palliative Care to New Heights

Anonymous donors’ gift will help families facing the unimaginable

Parenting a child with a complex medical condition is all-consuming. For many families, it means spending countless hours with specialists and therapists, managing medications and frequent hospitalizations – all while juggling work, home responsibilities and the needs of other children. For others, it means learning to let go of hopes and dreams and embrace life with a child whose journey will look vastly different from what you had imagined.

It’s not an easy path – in fact, it can feel downright unbearable at times. And that’s exactly why the Children’s Hospital Colorado Palliative Care program exists – to help families manage the pain, stress and struggles of having a child with a chronic or terminal illness.

“Palliative care encompasses many different domains,” says Dr. Brian Greffe, a pediatric oncologist who holds the Tanner and Ellie Seebaum Endowed Chair for Palliative Care at Children’s Colorado. “A robust program isn’t only taking care of the physical piece – pain and symptom management – but also the spiritual, the psychosocial, the emotional needs.  All of those elements play a role in supporting quality of life, and we tailor them according to what each family needs.”

Dr. Greffe explains that families facing a difficult diagnosis need more than expert pediatric medical care. They need comprehensive support for mind, body and spirit — a team of caregivers, mental health providers, social workers and care coordinators – all working together to assist with medical decision-making while addressing both mental and physical health needs.

Children’s Colorado first began offering Palliative Care services in 1999 through a partnership known as the Butterfly Program. Since then, it has become a stand-alone program staffed by five medical providers and a full-time care coordinator, known as the “Reach Team.” The group partners with Children’s Colorado social workers, chaplains, art therapists, specialists and, when needed, hospice care to give families the tools and resources they need to better manage their child’s treatment journey.  

Dr. Jeffrey Darst, a Children’s Colorado pediatric cardiologist, explains the importance of these services to the patients he serves: “When a teenager tells me that he wonders every single day if he’s going to die from his heart issue, I know I have to do more than just treat his illness. We need to lessen that child’s fear and help him regain a sense of control over his life.”

Tremendous growth, tremendous need

Over the past five years, the Children’s Colorado Palliative Care program has seen an explosion in demand for services – growing from around 5-6 monthly consults to serving nearly 40 families every month. The program is staffed by a highly dedicated and experienced team. But as patient volume has grown, palliative care services at Children’s Colorado have lagged behind other peer hospitals in terms of program size, scope and care integration.

“Palliative care needs to remain an intrinsic part of our service delivery and culture as an institution,” said Dr. David Brumbaugh, Chief Medical Officer at Children’s Colorado. “This is a critical specialty practice that can dramatically improve quality of life for our patient families.”

Dr. Brumbaugh notes that thanks to medical advances, more babies and children are now surviving well into adulthood with illnesses and diseases that were once considered terminal early in life – and that means there are now more kids living longer with complex conditions.

“It’s wonderful that more children are surviving these conditions, but that also increases the complexity of their care,” said Dr. Brumbaugh. “We have to make sure we have the support services these families need for as long as they need them.”

Anonymous donor makes a difference

Recognizing the critical importance of these services and the tremendous need for funding, a patient family recently made an anonymous donation of $1 million toward palliative care at Children’s Colorado. This family has first-hand experience with an unexpected diagnosis and its many ensuing struggles. They learned how much this situation changes the lives of patients and families moving forward, and they wanted to make the path easier for others facing a life-altering medical condition. Their gift is already making a transformative difference.  

Thanks to this generous family, the Children’s Colorado Palliative Care program will soon become its own stand-alone department with a designated section head to spearhead the program’s development and facilitate full integration of its services across the hospital’s full continuum of care.

“To elevate Palliative Care at Children’s Colorado, it needs to be its own section,” said Dr. Greffe. “Our hospital leadership truly believes in this program, but it’s just a matter of finding the funding so that our team can grow.”

Creating a stand-alone Palliative Care department with its own dedicated leader is an important first step, but additional funding is needed to grow the program to the scale that Dr. Greffe feels is needed to provide optimal support to all patient families. With donor support, the Palliative Care team could fund additional staff positions such as social workers, dedicated pediatric palliative care physicians, psychologists, care coordinators and chaplains.

Dr. Greffe also plans to develop a pediatric palliative care fellowship program at Children’s Colorado. He explains that most palliative care training programs focus on adults. By creating a pediatric fellowship track, Children’s Colorado could train the next generation of palliative care providers, elevating the standard of care and support services for children nationwide.

It’s a bold ambition, and one that will only happen with the help of philanthropic support. While Children’s Colorado believes palliative care is critically important, many of the program’s services are poorly reimbursed by insurance, leaving a funding gap that can only be filled by donors. “To be effective, this team must be integrated into every aspect of a child’s care, so that families have the tools and resources they need to cope and support their child in the best way possible – and maybe even celebrate moments of joy along the way,” says Dr. Greffe.