Abstract
Background:
Although limitations in access to pediatric hospice care have been previously documented, factors have not been directly assessed at the level of individual agencies. This study seeks to better define the current state of pediatric hospice care in a midwestern state, Indiana, and describe the challenges that limit the quality and availability of care.
Methods:
We used hospice referrals originating from the two pediatric hospitals in the state, surveys of hospice agencies operating within the state, and case descriptions to demonstrate gaps in service, barriers, and requested support.
Results:
The most common barriers to care include a lack of pediatric-trained personnel or education, discomfort, low demand, and limited access to materials/equipment. Newborns (0–4 weeks) were underrepresented in referrals and in agencies that would accept infants. Rural regions are uniquely challenged with fewer hospice agencies providing services while receiving less-frequent pediatric hospice referrals, resulting in less experienced care.
Conclusion:
An opportunity for improvement identified was on-demand pediatric hospice education materials to address hospice provider workflow and infrequency of pediatric patients.
Introduction
In the United States, annual mortality is 29.5 per 100,000 children (1–19 years old) and 5.5 per 100,000 infants (<1 year old).1,2 In Indiana, rates are higher at 35.5 per 100,000 children and 7.0 per 100,000 infants.1,2 Although pediatric deaths are not as commonly due to the chronic conditions that may be associated with hospice in the elderly, a significant number of families each year are faced with caring for a dying child without the same access to the services that allow this to occur outside of a hospital. Hospice services provide such support, although they have developed into their current form largely based on the needs of the adult population. In effect, this leads to a system that is less familiar and adapted to the nuances of morbidity among the pediatric population. The 2010 Affordable Care Act led to increased access to hospice services for pediatric patients while allowing them to also receive disease-directed interventions, 3 a step toward bridging many of the unique needs of this population. Despite these efforts, only 10% of children who die in the United States receive hospice services 4 compared with 49% of all Medicare decedents. 5
Accessibility of pediatric hospice care has been examined on a national level, with an average pediatric hospice annual census of 16.5 patients. 6 Indiana has hospice services available to adults in all counties, with the smallest five counties containing a population or 6–10,000 and nearly 1 million in the largest county. 7 Nationally, barriers to pediatric hospice care are gaps in knowledge and skill, financial uncertainty, low volume, and lack of sustainability. 6 In this study, we strive to examine with greater detail the landscape for pediatric hospice care in Indiana and identify the barriers to provision of pediatric hospice care, many of which are translatable to other regions. We also highlight the importance of pediatric-specific hospice care through several cases, providing examples of how this knowledge has a direct impact on patient and family care. Through a more granular understanding, we propose opportunities to increase access through education, advocacy, and mentorship.
Design, Methods, and Sample Selection
Hospice referral data collection
The Pediatric Palliative Care (PPC) team at Riley Hospital for Children (RHC) maintains a database of patients referred to hospice, including date of birth, referral diagnosis, date of enrollment, date of discharge/death, hospice agency of enrollment, home zip code, and outcome. The PPC team at Peyton Manning Children’s Hospital (PMCH) tracks similar information except for duration of admission. Referrals from January 2022 to December 2024 were included. The authors categorized referral diagnosis by consensus. Patient zip codes were extrapolated to counties using unitedstateszipcodes.org on September 5, 2025, and were categorized as metropolitan or nonmetropolitan using the United Stated Department of Agriculture (USDA) 2023 Rural-Urban Continuum Codes. Figure graphics were generated using software from paintmaps.com and Adobe Photoshop.
Hospice agency survey
A descriptive cross-sectional survey was designed and validated by health care professionals across multiple disciplines. 8 This survey included eight questions with preset response options regarding: total and pediatric enrollment in the past 12 months, services provided, demographics of patients accepted, counties served, current knowledge of and willingness to accept pediatric patients, barriers, and preferred methods of support. Sixty-nine active hospice agencies in Indiana were identified by the Indiana Department of Health website, with coverage of all 92 counties. Contacts were identified by phone at 56 agencies. REDCap survey was then sent via e-mail with reminders weekly for 4 weeks. No financial compensation was provided.
Cases
The authors used consensus to identify representative cases that describe the unique benefits of hospice care and palliative care collaboration, including one where hospice was not available. Names were changed for privacy.
Results
Hospice referrals from two children’s hospitals
RHC and PMCH are the only children’s hospitals within the state, both located in Indianapolis. Both provide care for patients from throughout the state with services, including level IV neonatal intensive care units (NICU), level I trauma, cardiothoracic surgery, and oncology subspecialties. The PPC team at RHC sees patients both inpatient and outpatient and remains involved in hospice care as a consultant or physician of record (depending on hospice presence). At PMCH, PPC team sees patients inpatient only and does not continue to manage patients after hospice enrollment. Over 3 years, 131 patient referrals were sent with 81.7% from RHC (Table 1). Referrals were placed in 43 of 92 counties, with 26.2% located in nonmetro areas (Fig. 1). No differences in age group, diagnosis category, or outcome were observed between institutions.
Pediatric hospice referral distribution by county, 2022–2024. Referrals from the two PPC programs in Indiana were converted from zip code to county and mapped. Metro and nonmetro areas are defined by the USDA 2023 Rural-Urban Continuum Codes. PPC, Pediatric Palliative Care.
Hospice Referrals by Pediatric Palliative Care Teams from Two Children’s Hospitals in Indiana over 3 Years (2022–2024)
Hospice agency survey
Responses received from 22 agencies described pediatric hospice referral frequency, enrollment, and common barriers (Table 2). There was a disparity across hospice agencies, with >75% receiving 5 or less referrals per year. Of the three agencies that received >10 referrals per year, only one also enrolled >10 children per year. Another had no pediatric enrollment despite >10 referrals per year. This agency indicated a desire to enroll pediatric patients with barriers of staff with pediatric experience and access to specialized pediatric equipment. More than half of agencies indicated interest in expanding pediatric services. Agencies that expressed interest in expanding pediatric services were less likely to identify “Lack of pediatric trained personnel/education” as a barrier to accepting hospice referrals (38% vs. 73%). Most identified needs were staff with pediatric expertise, staff training and education, and pediatric protocols (Table 2). Five hospice agencies were unable to enroll infants <1 month old despite accepting children from all other age groups. No consistent barriers or needs were identified by this subset of agencies.
Hospice Agency Survey
a20 respondents.
b19 respondents.
c18 respondents.
Case 1: Medication hesitancy
Gio was a 7-year-old boy with a rare neurological diagnosis with increasing seizures, progressive feeding intolerance, and decreasing consciousness. He was a long-standing patient followed by PPC, and historically, his parents shared hesitancy with medications to treat neuroirritability, pain, and poor sleep, including gabapentin, clonidine, and topical creams, due to concern about side effects, resulting in suboptimal symptom control. The hospice agency he enrolled with had nurses who were experienced and comfortable with pediatric symptom management and medications. Hospice and the PPC team collaborated to explain each medication’s purpose and how to identify signs of discomfort. Hospice was also available to help parents closely monitor for side effects, which increased family comfort with new medications. For 3 months, Gio experienced improved comfort. After his death, his mother was grateful they had time to focus on memories.
Case 2: Location of death
Keyanee was a 2-week-old with severe brain injury from birth trauma who survived compassionate extubation in the NICU. Parents elected to forgo artificial nutrition due to poor prognosis. As days passed, his parents asked to explore a setting away from other infants, though reiterated their preference that Keyanee not die at home. PPC sought alternative locations and partnered with a local hospice house 30 minutes from their home. Despite no previous experience with a dying infant, the staff created a warm and supportive environment. PPC provided guidance on clinical changes. Following Keyanee’s death, the hospice staff shared that despite the emotional difficulty of caring for an infant, they found purpose and fulfillment in his care.
Case 3: Hospice agency inaccessible
Benny was a toddler with cerebral palsy, chronic respiratory insufficiency, and refractory epilepsy with vagal nerve stimulator (VNS) following drowning. After several hospitalizations, the family shifted their goals to keep him home and comfortable. Twelve hospice agencies serving his county were contacted, but none could offer home-based or inpatient hospice care. PPC provided anticipatory guidance, prescribed comfort medications, and completed a Physician Orders for Scope of Treatment form. After discharge home without hospice care, Benny’s respiratory status worsened with his parents managing symptoms. However, they did not remember to stop his VNS. Following his death, they contacted the county sheriff and emergency services to pronounce his death. PPC had a prolonged discussion with them before they facilitated pronouncement and contact with a funeral home. Without hospice or other in-home personnel, Benny suffered inappropriate VNS stimulations, and parents suffered the trauma of managing symptoms without support, confusion, and how and when to stop his VNS, and county sheriff involvement with uncertainty regarding coroner involvement and body disposition.
Discussion
This report demonstrates a need to improve hospice care for children with lifespan-limiting illnesses. The challenges are not unique to Indiana. The discomfort of hospice staff in caring for pediatric patients and the need for further training have been previously described.4,6 We also captured a desire from hospice agencies to expand access for children. Virtual or prerecorded education has become more popular and accessible and accommodates the workflow of hospice teams.
Another notable challenge is infrequent pediatric hospice needs. Since fewer children die per year than adults, it is less practical to maintain pediatric-licensed staff within most hospice agencies. Many agencies rely on hospice staff without a pediatric license to care for these children, and they face the challenge of maintaining skills for caring for pediatric patients while not utilizing them daily. In our experience, this also contributes to inconsistency in whether agencies can accept pediatric referrals, as hospice agencies may not consistently have pediatric-licensed or trained staff. A key component across all the presented cases was support from PPC teams to bridge the gap in knowledge and comfort. The presence and level of involvement of PPC as a resource vary greatly, 9 with variability even between the two PPC teams in this report.
The cases were chosen to highlight the benefits of collaboration between PPC and pediatric hospice teams. Gio’s case (Case 1) exemplifies that hospice care can improve comfort with pediatric patients when there are team members who have experience with caring for children. The longitudinal in-home relationship with families allows them to guide families through medication hesitancy to improve adherence and effective symptom management. 10
Keyanee’s case (Case 2) demonstrates the role a hospice house can provide, particularly for an infant who never lived at home. Increasingly, hospice facilities are becoming a preferred location of death for adults 11 and children. 12 Funding for these facilities often depends on philanthropic support due to limitations on general inpatient hospice Medicaid and Medicare reimbursement. 11 Infants are least likely to die at home with hospice care (Tables 1 and 2). While family preferences may contribute to fewer deaths with home hospice (Case 2), there are other unique barriers, including different DME needs, less experience with symptom assessment in infants, and discomfort around prognostication. 13
Benny’s case (Case 3) shows the consequences of limited access to hospice services: impaired symptom assessment and management and complicated postmortem experience. Rural areas account for 28.9% of Indiana’s population 14 and were similarly represented by 26.2% of hospice referrals in our data. These regions, known to have less hospice availability, 5 collectively represented 41.9% of the counties with hospice referrals from PPC teams (Fig. 1). This is not unique to Indiana, with 20.4% of the U.S. population living in rural areas, and 22 other states reporting 20–40% living in these regions. 14 When combined with limited staffing, infrequent exposure to pediatric patients, and a lack of alternative agencies, families are left with few options.
Limitations to this study include response rate, with only 20% of hospice agencies captured. Selection bias for those who are invested in pediatric hospice care may be present. However, most respondents had not cared for a pediatric patient within the last year, suggesting that this population is represented. Generalizability may be limited due to variations in regional approaches and available resources.
Conclusion
This study underscores the critical need for enhanced pediatric hospice care, revealing barriers such as insufficient pediatric-trained personnel, discomfort among hospice staff, and logistical challenges in accessing services. Despite these obstacles, the willingness of many agencies to expand their offerings is promising and the cases demonstrate the ability of some hospice agencies to provide high-quality care for pediatric patients. On-demand high yield education and materials for the hospice team are needed to increase access for pediatric patients.
Authors’ Contributions
Design: D.N., K.H., E.H., A.I.C., and J.A.Z.; Data collection: D.N., P.B., K.H., S.D., E.H., and J.A.Z.; Data analysis: D.N., I.A.C., and J.A.Z.; Article preparation: D.N., P.B., S.D., I.A.C., and J.A.Z.
Ethics
This study was reviewed and approved by the Indiana University Institutional Review Board (#20348). It was deemed exempt, and informed consent was not required.
Footnotes
Acknowledgments
The authors thank the PPC teams at RHC and PMCH and the families they serve throughout Indiana.
Author Disclosure Statement
No authors have a conflict of interest. Artificial intelligence was not used in the conduct of this research or preparation of this article.
Funding Information
No funding was provided for this research.