A contingent of health care providers across the country are making new investments in pediatric palliative care, but creating these programs is no small feat. Many face obstacles such as a shrinking workforce, limited access to training and a generally poor understanding of the specific needs of children.
Although a growing number of hospices and other providers have taken steps to improve pediatric services, most seriously ill children do not have sufficient access to palliative care.
According to a study by the American Academy of Pediatrics (AAP), much of the care pediatric patients receive is provided by primary or subspecialty care providers rather than palliative care specialists. Many of these children are frequently hospitalized and very few receive timely or home-based services, the AAP said.
Staffing issues occurring across health care are a critical barrier.
Union concerns go beyond simple 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 healthcare workers who believe they have the personal resilience to care for children who are suffering or dying.
“For providers interested in doing so, if you understand the importance of comprehensive end-of-life care for young children, [then] think about the education and support you might need and really consider that that’s so important,” Dado told Hospice News at the palliative care conference in Chicago. “You have to be invested and willing to identify your current staff who want to look after children and just need that training or maybe hire new staff.
Pediatric care providers also face the risk of burnout, a longstanding issue that has become even more common among healthcare workers during the pandemic.
A second AAP study, this one published last year, found that 63% of pediatric inpatient palliative care programs reported concerns about burnout. Additionally, 60% indicated an inability to meet clinical demand with available staff. The survey included 54 programs in 29 states and the District of Columbia.
A lack of trained staff can prevent pediatric palliative care programs like these from taking off. However, some providers do their best to provide this care to pediatric patients.
Benioff Children’s Hospital at the University of California, San Francisco (UCSF) launched the Stad Center for Pediatric Pain, Palliative & Integrative Medicine last year, funded by a $3 million philanthropic gift.
The center is not immune to the pressures of work, but is looking for ways to do more with less to ensure patients’ needs are met, according to the center’s medical director, Dr. Stefan Friedrichsdorf. This includes acute and chronic pain management for inpatients and outpatients.
“I often hear my colleagues nationally say that we don’t have enough staff. But our commitment at UCSF is to do everything we can to prevent and treat pain for every child, every time,” Friedrichsdorf told local news. “Children with unrelieved pain turn into adults with much higher rates of chronic pain, anxiety and depression.”
Over the past year, the center has managed the care of more than 8,000 pediatric patients, a number that is expected to increase with the arrival of eight new clinicians, including three physicians, nurse practitioners, acupuncturists, massage therapists, psychologists, social workers and specialists in the East. Medication.
The Hospices are also mobilizing.
West Virginia-based Hospice of the Panhandle is expanding its pediatric palliative care program. The organization recently added two additional staff trained by the Children’s National Medical Center in Washington D.C.
The team works with patients and their families throughout the stages of illness to address practical, physical, emotional, psychological and spiritual needs.
Now in its second year, the palliative care provider’s pediatric palliative care team has so far served 11 patients and their families and plans further expansion as its clinical team grows.
“We want our community to know that we are here for them,” Adaira Green, a nurse with the pediatric care team at Hospice of the Panhandle, said in a company announcement. “While it’s hard to imagine an infant or child needing palliative care, many don’t even know that the hospice even provides care for pediatric patients.”
However, anyone who comes to work in pediatric palliative care must understand the nuances of the difference between the needs of children and those of adults.
The needs and conditions of pediatric patients differ from those of adults in terms of diagnoses, disease trajectories, drug dosages and equipment, and family dynamics and support.
About a quarter of children ages 2 to 8 in the United States have a chronic illness, the US Centers for Disease Control & Prevention reported.
Some of the most common terminal diagnoses include cancer, birth defects, deformities and chromosomal abnormalities, according to the CDC.
The “worst mistake” a hospice can make is taking its adult palliative care team and anticipating that those skills will translate to pediatric patient populations, Dado told Hospice News, saying it would be “a recipe for disaster.