Pediatric Palliative Care: Hope and Hoping for Something Different

For Debbie Lafond, Sojourns Scholar and award-winning nurse practitioner at Children's National, a simple question guides the interactions she and her team have with seriously ill and injured children: “What can we do to make every day the best it can be for these patients and their families?”

Lafond's simple question portrays a deep understanding that a child's diagnosis of serious illness is more than a medical issue. It's a human issue that impacts the entire family. By providing an extra layer of support, members of an interdisciplinary palliative care team work together to ease pain and suffering, and enhance the quality of life for everyone in a child's life.

Twenty years ago, there were no such services for children. Today, programs like the one Dr. Lafond leads help ensure children and their families live each day with quality, according to what that means for them.

Due to advances in medicine and technology, seriously ill and injured children are living longer and the need for pediatric palliative care is growing faster than the number of programs or practitioners can provide. Making services more accessible requires a common understanding that children have different needs than adults. It also demands collaboration from policy makers, public funders, hospitals, insurers and others to deliver the expert, multi-faceted care that children and families need.

A Different Kind of Care

Pediatric palliative care is a specialty that spans multiple phases of childhood development, from perinatal through young adulthood. Similar to adult palliative care, an interdisciplinary care team consisting of doctors, nurses, social workers, chaplains, and other specialists works together to relieve suffering, slow disease progression and improve the patient's quality of life at all stages of disease.

Children experience serious illness differently than adults do due to developmental changes and disease ranges and thus require different support, especially when it comes to decision-making, advance care planning and life-prolonging therapies. Through its interdisciplinary approach, pediatric palliative care addresses these needs, from time of diagnosis throughout the course of disease, focusing on family relationships and making daily life better for the child.

Kathy Perko, M.S., C.P.N.P. and program director of the Bridges Palliative Care Program at OHSU Doernbecher Children's Hospital, stresses that pediatric palliative care isn't a one-time consult. It's an ongoing relationship, with practitioners often caring for patients from infancy into adulthood. During that time, they're also building relationships with others in the child's circle, including parents and siblings, who all view serious illness and death differently. In this way, the specialty requires a broader spectrum of expertise to support adults and children of all ages.

Areas of Opportunity

Thanks to the leadership of Lafond and Perko, many seriously ill children and their families have lived each day to the fullest. We should build on their progress by addressing the following areas of opportunity:

• Funding: Hospitals, public funders and private payers play an essential role in funding therapeutic services adjacent to medical services. They can also invest in leadership and innovation to advance the field. For example, the Cambia Health Foundation established an endowed pediatric palliative care Chair at OHSU Doernbecher—one of only three such chairs in the United States. In this role, Robert Macauley, M.D., FAAP, FAAHPM, is collaborating with Kathy Perko and other national leaders to accelerate change in the field.
• Home care: There should be better benefits to cover in-home caregiving. Before Perko established Bridges, 80 percent of the children they cared for with cancer died in the hospital. Today, 80 percent die at home. “That's a win, because that's most often what the family wants,” she says.
• Workforce: With skilled clinicians in short supply, the field needs more faculty to prepare providers, and fellowships and initiatives like the Cambia Health Foundation's Sojourns Scholar Leadership Program to train members of the interdisciplinary team.
• Evidence-based research: Most research in this field has been based on data from treating adults. While initiatives such as the Pediatric Palliative Care Research Network (PPCRN) are helping ensure that decision-making is driven by more than anecdotal evidence, more investment is needed here.

A Call to Action

Serious illness is a human issue that impacts all of us. Stakeholders at all levels must step up to carry forward the progress forged over the last two decades to ensure that pediatric palliative care is readily accessible to patients and their families who need an extra layer of support.

Peggy Maguire provides leadership and strategic direction to several key areas at Cambia Health Solutions, including ethics, compliance, strategic planning, corporate performance, enterprise risk management and corporate social responsibility. She also serves as president and board chair of Cambia Health Foundation, where she works with a wide range of stakeholders to improve palliative care leadership, quality, access and understanding through Sojourns, the Foundation's signature program. Peggy joined the company in 1997 as an associate general counsel and has held several posts at the company.