Ripple in Still Water: Taboo Topic, Real Experience
BY SCOTT ADAIR COX, MSW, LCSW
Professionals working in hospice are familiar with how end-of-life conversations are difficult, frequently avoided, and often considered taboo. Directing this conversation around a pediatric patient tends to exacerbate discomfort. Parents are not ready to consider their child’s mortality; friends and extended family are unsure of what to say or how to support the dying patient and their families, and there are strong opinions on how to manage the siblings and close friends. Yet, several families are forced into these conversations every year as a result of their child’s medical condition. The Center to Advance Palliative Care (2024) indicated that approximately 700,000 children in the United States are living with a serious illness. The National Organization for Rare Disorders (NORD) found that 15,000 children in the United States have been diagnosed with a rare medical condition. NORD reported that 30% of those 15,000 children die prior to their fifth birthday. Rare Disease and Harvard University Review Board obtained similar data, finding that 35% of children with a rare condition will die before turning one year old. Additionally, the American Childhood Cancer Organization reported that approximately 15,500 children are diagnosed with cancer every year, with 41 families learning their child is diagnosed with cancer every day. While the National Cancer Institute found that 85% of children diagnosed with cancer are alive five years after diagnosis, this finding may be misleading. The City of Hope’s (2025) research indicates there are still childhood cancer diagnoses (i.e., Diffuse Intrinsic Pontine Glioma—DIPG) with a 2% survival rate five years after diagnosis. Families that constitute these statistics are forced into preparing for the loss of a child, engaging in end-of-life conversations, and learning a medical system regardless of readiness. This article will examine whether the medical system is able to meet these patients’ and families’ needs.
THE SYSTEM
Literature on pediatric hospice and palliative care identifies significant gaps in services. Murphy et al. (2017) reported that a low percentage of dying children receive hospice care. This was supported by Weaver et al.’s (2023) findings of limited pediatric program availability, low pediatric hospice enrollment, and a high percentage of pediatric deaths occurring in acute care settings. Aglio et al. (2022) indicated that over 40% of the children’s hospitals involved in their study lacked access to pediatric-specific hospice and that many patients were traveling long distances for specialty care. Turner, Ricketts, & Leslie (2020) found a large percentage of children resided over an hour from a pediatric specialist and often experienced limitations to the type of specialist in their region. Literature identifies many reasons for limited pediatric hospice availability. Weaver et al. (2023) found four major barriers to providing pediatric services, including gaps in knowledge and skill, financial uncertainty, low volume or poor program utilization, and lack of sustainability.
Davis et al. (2023) found that adult hospice organizations have been taking more pediatric cases over recent years. These findings are congruent with Illinois, where families in 91 of the 102 counties in the state receive services from adult hospice organizations because they do not have a pediatric hospice provider available in their communities. Utilization of pediatric hospice remains low despite an increase in adult programs accepting pediatric cases. The Center for Disease Control (CDC) indicates that there are almost 6,000 hospice care agencies in the United States, serving almost 2 million patients a year, with a low number of these patients being classified as pediatric. Weaver et al.’s (2025) research on nearly 300 adult hospice organizations found that pediatric patients make up less than 1% of their census.
Low pediatric hospice utilization is understandable when reviewing the data. The number of pediatric patients living with a serious illness is a small percentage of the population. Country, rural, and small metropolitan communities do not have the population density to constitute a high pediatric census, thus making a pediatric hospice team difficult to justify on the general operating budget. These organizations are forced to utilize adult providers to meet pediatric hospice needs. Additionally, operating costs and the shift from hospice being a non-profit dominate to a for-profit sector over the last several years appear to contribute to the limited number of providers in urban areas. Basically, the size of pediatric teams is a financial strain on organizations, especially in comparison to the low numbers of patients and current limits to pediatric palliative reimbursement that would supplement funding in most states.
The solution to the gaps in pediatric services is beyond the scope of this article. The following are suggestions for how to meet the patient and family’s needs and potentially increase utilization of pediatric hospice until larger, systematic changes occur.
BECOME FAMILIAR WITH CONCURRENT CARE
The word “hospice” is a potential barrier to pediatric hospice utilization. Parents of pediatric patients often view hospice in the traditional “adult” sense, subsequently perceiving the selection of hospice benefits as “giving up” on their child. Concurrent care allows patients and families to maintain hope and continue to fight for recovery through curative treatments while still accessing their hospice benefit. The Concurrent Care for Children Requirement (CCCR) has been around since March 2010, when President Obama signed section 2302 of the Patient Protection and Affordable Care Act into law. This federal law states that children and adolescents enrolled in Medicaid who qualify for and are enrolled in hospice can still receive curative treatment related to their condition. Concurrent care allows patients to receive hospice benefits, in addition to any service that is medically necessary under the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) requirement. Concurrent care can be used simultaneously with other programs, including HCBS waiver programs. Concurrent care’s success as a program is evinced in the increase in pediatric utilization since becoming a law, especially over the last ten years as the hospice profession has increased its knowledge of the benefit. However, it is important to note that concurrent care is focused on children enrolled in Medicaid or Children’s Health Insurance Program (CHIP). Concurrent care does not mandate services for patients and families with private insurance. Although pediatric patients with private insurance may possess a concurrent care benefit, this would need to be verified by billing, and parents should be encouraged to educate themselves on the content of their policy.
It is imperative that hospice organizations, especially adult hospice providers with the potential to serve pediatric patients, familiarize themselves with the tenets of concurrent care to ensure accurate implementation of this benefit. Increased knowledge of concurrent care will assist in conversations with families about entering hospice services and discussions with referral sources. Increased knowledge of concurrent care will also assist in providers’ ability to advocate for the proper use and explanation of benefits when necessary. Weaver et al.’s (2025) findings indicate that a large majority of participants in their study could not define concurrent care, creating gaps in the implementation of this benefit. These findings show that although the pediatric hospice and palliative care community has grown tremendously in its understanding of concurrent care, not all providers and organizations providing treatment to hospice patients possess fundamental knowledge of this benefit. This could result in a family being told their child cannot receive curative treatment because they are enrolled in hospice. The impact of a family being told their child cannot receive treatment because of their hospice designation could trigger or actualize all their suppressed fears for choosing this benefit and damage your rapport. It is important that hospice staff anticipate the possibility for the family to experience a provider with limited knowledge of concurrent care and have a plan to help them through barriers to curative treatment before they terminate involvement in their hospice program.
Readers of this article interested in learning more about concurrent care are encouraged to start with the National Alliance for Care at Home’s Concurrent Care for Children Requirement: Implementation Toolkit. This resource provides a comprehensive overview of the history, components of the program, and suggestions for implementation.
UNDERSTAND WHAT IS IMPORTANT
Increasing knowledge of concurrent care will help with the administration of pediatric hospice. Identifying and providing what is important to pediatric patients and families will ameliorate the implementation of pediatric hospice. Parents involved in the Boyden et al. (2021) study identified pain and symptom management and psychosocial support as the most important aspects of their hospice experience. Participants in this study also emphasized the importance of care coordination in their positive hospice experience. Pediatric hospice teams are built to excel in domains research identifies as important to patients and families. Many pediatric programs possess larger teams to accommodate these needs and embody family-centered care. These teams work together to understand, identify how to approach, and implement services that support the patient’s goals. An overview of a pediatric hospice team’s service delivery may provide adult providers with the knowledge for how to emulate the most important aspects of pediatric services.
Pediatric hospice medical staff (i.e., medical director, nurse practitioner, registered nurse) are tasked with managing pain, symptom progression, and end-of-life care. These professionals are familiar with rare pediatric disorders and walk patients and their families through signs of disease progression, what to expect, how to manage changes in functioning, and how to keep the patient comfortable at end of life. Pediatric clinical social workers exceed resource acquisition and end-of-life planning, often providing psychotherapy to address anticipatory grief, trauma and mood-related symptoms, and interpersonal needs families may possess. Social workers also engage in advocacy and coordination of care with outpatient rehabilitation, school districts, and governmental programs and help with activities that enhance quality of life. Child life specialists are critical members of the interdisciplinary team, providing age-appropriate interventions and legacy-building activities to the entire family. While child life specialists are often considered to be the “fun” staff, the scope of their profession is much more expansive, including helping siblings cope with their emotional distress, working with schools to teach classrooms about DME or how to talk to the patient about their illness, and teaching parents how to speak with siblings about dying. Pediatric hospice teams often possess a Certified Music Therapist designation to help manage patient and sibling emotional distress, assist with end-of-life anxiety symptoms, and engage in legacy activities. Certified Massage Therapists help the patient with pain management and teach family members techniques to utilize when no staff are present. Certified Nursing Assistants (CNAs) help with personal care. Chaplains support families in navigating their religious and spiritual needs, and help with funeral planning, emotional support, and bereavement services. Bereavement clinicians help families navigate anticipatory grief, as well as providing services for surviving family and friends once the patient has died. The power of this multi-disciplinary team is rooted in the ability to meet the physical and emotional needs patients, parents, and family possess when a child is nearing death. Small pediatric teams and adult providers likely do not have the staff to complete all of these roles. Organizations in these situations are given this overview to understand how a pediatric team functions, identify aspects of this process they can complete, and make efforts to excel at interventions focused on pain and symptom management, emotional support, and coordination of care.
According to the SAMSHA TIP 57 – Trauma Informed Care Manual, a trauma-informed organization trains all staff to realize the widespread impact of trauma, recognize signs and symptoms of trauma in patients and staff, respond by integrating trauma knowledge into policies and program procedures, and resist re-traumatization. Pediatric hospice teams utilize their size and multidisciplinary expertise to gather the patients’ and families’ narratives, learn what experiences they have and if they are considered traumas, and follow the tenets of a trauma-informed organization to address trauma symptoms in the families they serve. The reality is most parents, caregivers, and siblings describe losing their child/siblings as traumatic. Patients and families share devastating experiences associated with learning of a terminal illness and how every aspect of their lives has been adversely impacted since the date of diagnosis. These parents are speaking to the mental health definition of trauma, not medical trauma. The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition Text Revision (DSM-5-TR), identifies exposure to actual or threatened death or serious injury to a family member and repeated exposure to aversive details of this event as a qualification for a Posttraumatic Stress Disorder (PTSD) diagnosis. The DSM-5-TR (2022) is clear that “a life-threatening illness or debilitating medical condition is not necessarily considered a traumatic event” (page 678). However, later in the PTSD diagnostic features section, the DSM-5-TR (2022) states that witnessing a child or loved one experience a medical catastrophe during the course of their medical journey would classify as a trauma. Constant hospitalizations for medical emergencies, disease progression, monitoring the numbers of your DME for changes, and witnessing pervasive discomfort from your child would qualify for the DSM-5-TR’s criterion of repeat exposure to aversive details of the diagnosis. While the diagnosis of PTSD requires evidence of other criteria, this information suggests that the activating criteria (Criterion A) could be met in most cases and supports the language families use when describing a child’s medical journey to hospice.
DSM-5-TR identifies the other four main PTSD criteria as intrusive, avoidant, negative alterations in mood and cognition, and arousal symptoms. All of these secondary criteria manifest in cognitions, physiological symptoms, or behavior. These secondary criteria are the behavioral and cognitive patterns, ego defenses, arousal symptoms, and other tentacles of their trauma that hospice staff could encounter when working a pediatric case. The point of this information is to provide an overview of what adult and smaller pediatric programs could encourage. Programs that do not possess the specialist necessary to navigate trauma symptoms can still accept cases. Adult hospice and small pediatric programs are encouraged to refresh their knowledge and implementation of trauma-informed care, resource out those services that are beyond their scope of practice, and focus their interventions on pain and symptom management, emotional support, and coordination of care to support families. Adult providers and members of smaller pediatric hospice teams would also benefit from networking with pediatric providers to understand how this system works and learn methods to increase their comfort in pediatric cases.
EDUCATION AND KNOWLEDGE ARE POWERFUL TOOLS
Another important step in supporting adult programs working pediatric cases is to identify what staff believe would be most beneficial. Davis et al. (2023) found that economics, limited Medicaid knowledge, and staff comfortability of working with children were not the primary antecedents of adult providers’ reluctance to work with pediatrics. Rather, this study indicated that adult hospice providers believe more education and training on pediatric services and increased support in service implementation would elevate their comfort. The findings of this study are powerful in refuting several of the longstanding myths regarding adult hospice staff’s hesitation to take pediatric cases.
The findings also indicate that the answer for increasing the number of pediatric patients that receive hospice services may be easier than originally thought. There are numerous training options for providers who are seeking more knowledge on pediatric hospice. Trainings like EPEC and ELNEC have pediatric-focused modules that can increase staff knowledge. The Shiley Haynes Institute for Palliative Care offers expansive education opportunities, including certificate programs. There are numerous conferences available around the country that offer pediatric content to some degree. The Pennsylvania Pediatric Palliative Care Coalition offers monthly education sessions that are less time-consuming and are rich in content. Programs like HAP’s Lynda P. Bollman Pediatric Hospice and Palliative Care Program offer a free monthly learning collaborative for any professional working in or around pediatric hospice and palliative care in the state of Illinois. The Lynda P. Bollman program has also created a resource guide to provide family members, adult practitioners working pediatric cases, and pediatric staff with a quick reference tool to reduce the burden of researching resources. There are many other resource guides available to workers. Hospice organizations are encouraged to research these different options and work with staff to provide the education that would increase their comfort in working with pediatric patients.
The final aspect of education is related to advocacy and legislation. Pediatric hospice and palliative care is filled with individuals advocating for new legislation that will enhance services and support. While the expansive nature of federal and state laws can be overwhelming, it is important to know the changes that impact pediatric patients. For example, pediatrics has had important federal laws passed already in 2026, including the Mikaela Naylon Give Kids a Chance Act, the Accelerating Kids Access to Care Act, and HHS adding Duchenne Muscular Dystrophy (DMD) and Metachromatic Leukodystrophy (MLD) to the Recommended Uniform Screening Panel (RUSP). States also influence practice through legislation. Illinois is a great example, recently passing a DPH – POLST Training bill and a bill that will add equine therapy as a service option covered by insurance. Adult hospice organizations are encouraged to remain knowledgeable on legislation and public policy changes to accommodate their quest for more education on pediatric services.
CONCLUSION
Pediatric hospice has many gaps in service. This article highlights some barriers to service availability and reasons for low utilization. The article also focuses on the power of pediatric hospice services and the manner that adult providers are filling gaps in treatment. The multidisciplinary makeup of larger pediatric teams is providing trauma-informed, family-centered care to pediatric patients and their families. Ways to expand the number and reach of pediatric hospice programs will need future research, advocacy, and coordination. In the interim, adult hospice organizations are providing services in areas where pediatric hospice teams are not available. The article highlights the need to support these programs, as they are providing valuable services to an underserved population. Organizations will need to increase their understanding and implementation of concurrent care. This article identifies reaching out to pediatric providers for support and guidance, expanding knowledge of trauma-informed care, engaging in pediatric-focused education, and remaining up to date on legislation as additional methods to support the staff serving these families.
Scott Adair Cox, MSW, LCSW, is a Doctoral Student, ELNEC Trainer, EMDR and CCTP II trained, Grief Trained, RBT Trained, Triple P and Nurturing Families trained. He is the Executive Director of the Lynda P. Bollman Pediatric Hospice and Palliative Care Program at the HAP Foundation. He worked in outpatient pediatric hospice and palliative care upon transitioning to this field six years ago. Prior to entering pediatric hospice and palliative care, Scott worked in child welfare and juvenile justice for 22 years He is a trauma specialist who held leadership positions for 14 years prior to leaving child welfare. Scott was also a professor for those learning to provide psychotherapy for ten years. He earned his Masters in Clinical Social Work from New York University’s Silver School of Social Work. He is a dissertation away from a Ph.D in Counselor Education and Supervision.
