The majority of hospice patients are seniors by far, but providers are recognizing and responding to a growing need for pediatric services. As more families learn about the nature of hospice — and as more health care moves into the home setting — demand is escalating. This presents both an opportunity and a challenge for hospices seeking to build up the number of families they serve while navigating the unique complexities of pediatric care.
Youth-specific hospice patients are among the most underserved demographics, and they face a variety of end-of-life care needs that are unique from those of adults. The majority of children with serious illness are cared for exclusively by primary care or subspecialty clinicians, according to research by the American Academy of Pediatrics (AAP).
Like their adult counterparts, children are often subjected to intensive and expensive treatments that may be unlikely to improve their condition or relieve their symptoms. While every person should be afforded the right to choose high-acuity care if that is their preference, more families also need to understand the full spectrum of services that are available to them.
Children with serious illness comprise less than 10% of the U.S. population but account for at least 50% of hospital resources for youth patients, according to the AAP study. This research indicated that childhood disease trajectories are often less predictable than those of adults, challenging the ability of physicians to predict the six-month prognosis typically involved in hospice care. This can lead to families avoiding hospice in favor of expensive and intensive medical interventions, though children are able to receive curative treatments concurrently.
Current data on pediatric hospice utilization are scarce, but indicators suggest that expansion of these services is underway throughout the hospice industry.
The 2015 Institute of Medicine report “Dying in America” identified a significant increase in the proportion of pediatric deaths that occur in the home. This is part of a larger shift towards home-based end-of-life care rather than hospitals.
“This increase may be due to a desire to have home be the place of death or to inadvertent deaths occurring to children who are medically fragile as a result of illness or dependence upon medical technology,” the institute’s report said. “Either way, this shift in location of death underscores the importance of having sufficient community-based capacity to provide care in the home for pediatric patients.”
A growing number of hospice providers are focusing on younger populations with serious or terminal illness, tailoring programs and services to these patients and their families.
Among them is Florida-based Trustbridge, which has seen the number of pediatric patients it serves more than quadruple from about five to 20 to 30 annually, leading 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 construction of a new support center. The center is tailored specifically to 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 in-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 distinct from those of adults. Providers need specialist knowledge regarding medication dosing, specialized equipment and assistance with family dynamics and support. As demand rises, more hospice clinicians will need this kind of training. This represents a challenge for hospices, many of which are struggling to ensure they have sufficient staff coverage to provide conventional care to adults.
Another complication that pediatric hospices must navigate is the availability of concurrent and curative care for children. Among U.S. states, 32 offer models for pediatric concurrent care — including services such as dialysis, chemotherapy, and medication, 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. Generally, these programs apply to patients 21-years-old or younger.
“Advocates of pediatric hospice care recognized that the strict choice between curative and hospice care was a significant barrier to enrollment in pediatric hospice services at the end of life,” the study authors wrote. “To overcome this barrier, in the 2000s several states demonstrated innovation in financing and care models and developed alternative pathways to enrollment in pediatric hospice that allowed children to continue to receive curative care.”
Concurrent care can provide much needed relief for patients and families, as well as reduce health care costs. The Center for Medicare & Medicaid Innovation’s Medicare Care Choices Model demonstration, designed to test concurrent hospice care, has yielded more than $26 million in savings. However, hospices must be careful when determining which treatments should be covered by the hospice and which should be billed as concurrent care.
Determining which treatments and services fall under the hospice benefit and which do not is a complex process for any patient, pediatric or adult. When it comes to concurrent care, strong relationships and consistent communication with state agencies that oversee these programs are essential to ensuring regulatory compliance and accurate billing. Conversations with suppliers and vendors about concurrent care coverage is key to compliance, including providers of pharmacy services and durable medical equipment.
It can be heartbreaking to consider that such need exists for pediatric end-of-life care, but the fact that hospice clinicians have the courage and compassion to provide those services is truly inspiring. I have seen first hand the benefits of pediatric hospice within my own family, and I hope that others in need will have greater access to that care. As pediatric hospice continues to grow, employers will have to ensure that staff who care for children have sufficient support to mitigate 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 rising turnover throughout the industry. The COVID-19 pandemic has only exacerbated this problem. It stands to reason that the risk of burnout could be higher for those working with children due to the sensitive nature of that work, and clinicians will need resources to help them process the emotional toll