The majority of hospice patients are by far seniors, but healthcare providers are recognizing and responding to a growing need for pediatric services. As more families learn about the nature of hospice – and as more healthcare moves to the home – the demand escalates. This presents both an opportunity and a challenge for hospices looking to build the number of families they serve, while circumventing the unique complexities of pediatric care.
Youth-specific hospice patients are among the most disadvantaged demographics and they face a variety of end-of-life care needs that are unique to those of adults. According to research from the American Academy of Pediatrics (AAP), the majority of children with serious illness are cared for exclusively by primary care or subspecialists.
Like their adult counterparts, children are often subjected to intensive and expensive treatments that are unlikely to improve their condition or relieve their symptoms. While everyone should have the right to opt for high-acute care care if that is their preference, more families should also understand the full spectrum of services available to them.
According to the AAP study, children with severe illness make up less than 10% of the U.S. population but represent at least 50% of hospital resources for childhood patients. This study indicated that the course of the disease in children is often less predictable than that of adults, calling into question the ability of physicians to predict the six-month prognosis typical of hospice care. This can lead families to avoid hospice in favor of expensive and intensive medical interventions, although children can receive curative treatments at the same time.
Current data on pediatric hospice use is sparse, but indicators suggest that expansion of these services is underway across the hospice industry.
The 2015 Institute of Medicine report “Dying in America” identified a significant increase in the rate of infant mortality occurring at home. This is part of a larger shift to home care rather than hospitals.
“This increase may be due to the desire to have the place of death at home or to unintentional deaths in children who are medically vulnerable due to illness or dependence on medical technology,” the institute’s report said. “Either way, this shift in the place of death underscores the importance of adequate community-based capacity to provide home care for pediatric patients.”
A growing number of hospice providers are targeting younger populations with severe or terminal illness, tailoring programs and services to these patients and their families.
Among them is Trustbridge, based in Florida, where the number of pediatric patients it serves has more than quadrupled from about five to 20 to 30 per year, which has led the company to invest in expanding their program.
Likewise, the Denver Hospice in Colorado has ramped up its Footprint Children’s Services pediatric program, including the construction of a new support center. The center is tailored specifically for pediatric patients and their families and provides education, training and back office support for the hospice.
The Just 4 Kids Home Health & Hospice, Idaho’s first clinic to provide home and hospice care to children, opened in January. Organizations such as the Hospice of Michigan, Hospice and Palliative Care Buffalo, Bluegrass Care Navigators, ProCare Hospice in Nevada, and Connecticut-based Regional Hospice & Palliative Care have also made significant investments in pediatric programs in recent years.
Services like these recognize that the needs of terminally ill children are different from those of adults. Providers need specialist knowledge in medication dosing, specialized equipment, and help with family dynamics and support. As the demand increases, more hospice clinicians will require this type of training. This poses a challenge for hospices, many of whom struggle to ensure they have adequate staff coverage to provide conventional care to adults.
Another complication that pediatric hospices have to deal with is the availability of concurrent and curative care for children. Of the U.S. states, 32 offer pediatric concurrent care models – including services such as dialysis, chemotherapy, and medications, among others – in accordance with section 2302 of the Affordable Care Act, according to a Health Affairs study. The specifics of these models vary from state to state. In general, these programs apply to patients 21 years of age or younger.
“Proponents of pediatric hospice care recognized that the strict choice between curative and hospice care was a major barrier to enrollment in pediatric end-of-life hospice services,” the study authors wrote. “To overcome this barrier, several states demonstrated innovation in funding and care models in the 2000s and developed alternative pathways to enrollment in pediatric hospices that would allow children to continue to receive curative care.”
Concurrent care can provide much-needed relief for patients and families, as well as reduce healthcare costs. The Center for Medicare & Medicaid Innovation’s Medicare Care Choices Model demonstration, designed to test concurrent hospice care, has generated more than $ 26 million in savings. However, hospices must be careful in determining which treatments should be covered by the hospice and which should be billed as concurrent care.
Determining which treatments and services are covered by hospice benefits and which are not is a complex process for any patient, pediatric or adult. When it comes to concurrent care, strong relationships and consistent communication with government agencies overseeing these programs are essential to ensure regulatory compliance and accurate billing. Discussions with suppliers and vendors about concurrent healthcare coverage are key to compliance, including providers of pharmacy services and durable medical devices.
It can be heartbreaking to consider that there is such a need for end-of-life pediatric care, but the fact that hospice clinicians have the courage and compassion to provide those services is truly inspiring. I have seen firsthand the benefits of pediatric hospice within my own family, and I hope that others in need will have more access to that care. As children’s hospice continues to grow, employers will need to ensure that staff caring for children receive adequate support to reduce the emotional and psychological stress that comes with it.
Research shows that more than 62% of hospice clinicians have experienced burnout to some degree, and this has contributed to increasing sales across the industry. The COVID-19 pandemic has only exacerbated this problem. It goes without saying that the risk of burnout may be higher for those who work with children due to the sensitive nature of that work, and clinicians will need resources to help them deal with the emotional toll.