Hospices, Health Systems Expand Pediatric Palliative Care, Hit Staffing Barriers

A contingent of health care providers across the country are making new investments in pediatric palliative care, but building these programs is no easy feat. Many hit obstacles such as a dwindling workforce, limited access to training and a generally poor understanding of children’s specific needs.

Though a rising number of hospices and other providers have taken steps to better scale pediatric services, most seriously ill children lack sufficient access to palliative care.

Much of the care pediatric patients do receive is done by primary care or subspecialty providers rather than palliative specialists, according to research by the American Academy of Pediatrics (AAP). Many of these children experience frequent hospitalizations, and very few receive services in a timely manner, or in the home setting, AAP indicated.

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The staffing issues occurring throughout health care represent a critical barrier.

The labor concerns go beyond mere numbers. Few clinicians have the specialized training to provide pediatric palliative care, according to Sara Dado, senior director of clinical programs for Lightways Hospice and Serious Illness Care.

Another consideration is the number of health care workers who believe they have the personal resilience to care for children who are suffering or dying.

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“For providers out there interested in doing this, if you understand the importance of comprehensive end-of-life care for young children, [then] think about the education and support that you might need and really consider that is so important,” Dado told Hospice News during the Palliative Care Conference in Chicago. “You have to be invested and willing to identify your current staff that want to care for children and just need that training or maybe hiring new staff.”

Pediatric providers also contend with the risk of burnout, a longstanding issue that has become even more commonplace among health care workers during the pandemic.

A second AAP study, this one released last year, indicated that 63% of surveyed inpatient pediatric palliative programs reported concern for burnout. Additionally, 60% indicated an inability to meet clinical demand with available staffing. The survey included 54 programs in 29 states and the District of Columbia.

A lack of trained staff can curtail pediatric palliative programs like these from taking flight. Nevertheless, some providers are doing their utmost to bring this care to pediatric patients.

University of California San Francisco (UCSF) Benioff Children’s Hospital last year launched the Stad Center for Pediatric Pain, Palliative & Integrative Medicine, financed with a $3 million dollar philanthropic donation.

The center is not immune to the labor pressures, but seeks ways to do more with less to ensure patients’ needs are met, according to the center’s medical director, Dr. Stefan Friedrichsdorf. This includes rehabilitative inpatient and outpatient acute and chronic pain management. 

“I often hear from my colleagues nationwide that we don’t have enough staff. But our commitment at UCSF is to do everything possible to prevent and treat pain for every child, every time,” Friedrichsdorf said in an interview with a local news outlet. “Children with unrelieved pain turn into adults with much higher rates of chronic pain, anxiety and depression.”

In the past year, the center has managed care of more than 8,000 pediatric patients, a number expected to grow as eight new clinicians come on board, including three physicians, nurse practitioners, acupuncturists, massage therapists, psychologists, social workers and specialists in Eastern medicine.

Hospices are also stepping up.

West Virginia-based Hospice of the Panhandle is growing its pediatric palliative care program. The organization recently added two additional staff members trained by the Children’s National Medical Center in Washington, D.C. 

The team works with the patients and their families throughout the illness stages to address practical, physical, emotional, psychological and spiritual needs.

Now in its second year, the hospice provider’s pediatric palliative care team has thus far served 11 patients and their families and anticipates further expansion as their clinical team grows.

“We want our community to know that we are here for them,” Adaira Green, a nurse on Hospice of the Panhandle’s pediatric care team, said in a company announcement. “While it is difficult to imagine that an infant or child may need hospice care, many are not even aware that Hospice even provides care to pediatric patients.”

However, anyone who comes to work in pediatric palliative care must understand the nuances of how children’s needs differ from those of adults.

Pediatric patient needs and conditions differ from adults in terms of diagnoses, illness trajectories, medication dosing and equipment, as well as family dynamics and support.

Roughly a quarter of children ages 2 to 8 years old in the United States have a chronic health condition, the U.S. Centers for Disease Control & Prevention reported.

Among the most common terminal diagnoses are cancer, congenital malformations, deformations and chromosomal abnormalities, according to the CDC.

The “worst mistake” a hospice can make is to take their adult palliative care team and anticipate that these skills will translate to pediatric patient populations, Dado told Hospice News, stating this would be “a recipe for disaster.”

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