Challenges in Pediatric Home-Based Hospice and Palliative Care: A Case Series

Abstract

Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and palliative care, there remain barriers to its optimal development, implementation, and dissemination as well as best clinical practice knowledge gaps. This case series presents specific examples of ubiquitous challenges in pediatric home-based hospice and palliative care in hopes of guiding future research, education, advocacy, and program development efforts.

Introduction

Pediatric home-based hospice and palliative care (HBHPC) has been described as a “field within a field” because of its unique setting and care delivery capabilities.¹ HBHPC is no longer uncommon, with over half of hospice organizations in a survey by the National Hospice and Palliative Care Organization (NHPCO) in 2020 reporting they provide home-based pediatric hospice services and one-third reporting they deliver home-based pediatric palliative care services.² HBHPC significantly improves patient and family quality of life, decreases caregiver burden, provides effective symptom relief, and facilitates peaceful death at the end of life.^3–5 Pediatric HBHPC is systemically beneficial, with significant cost savings and decreased length of inpatient stay.^6,7 Community-based programs can also reduce unwanted readmissions and facilitate care delivery at an individual’s preferred care location, often at home.⁸ There are ongoing research efforts to determine and prioritize provider, caregiver, and patient-defined quality domains in HBHPC^9–13 and to explore novel HBHPC delivery models, including telehealth.¹⁴

Despite the growth of HBHPC, there remain challenges to its optimal development, implementation, and dissemination as well as unknowns regarding clinical best practices. We present a series of three composite cases, each an amalgamation of children with severe, life-limiting illnesses, to highlight these challenges in HBHPC in an effort to guide future research, advocacy, education, and program development efforts. Institutional Review Board approval was not required by the authors’ institutions for case series of three or fewer persons.

Case 1

Ally* was a two and a half month-old girl referred to pediatric palliative care (PPC) for pain/symptom management, family support, and care coordination due to chromosomal deletion with cardio-pulmonary and neurological manifestations. Ally resided in a rural community with her parents, who understood that she would die within weeks to months. Though willing to treat reversible conditions, they stated that Ally’s comfort via hospice care was their goal, and they did not want advanced respiratory or cardiopulmonary resuscitation. They named a particular hospice with which they had had a positive adult family member experience. The PPC team advised the family that finding an accepting hospice could take time, so if Ally were to die at home, they were instructed to call local emergency services to pronounce her death with the support of the on-call PPC team. The PPC team contacted the hospice, who declined the patient, stating they were “neither licensed nor insured to care for persons under 18 years old.” The PPC case manager identified and contacted nine other hospices within a fifty-mile radius before finding one to accept her. The hospice that assumed care of Ally primarily serviced adult patients and did not provide child life and art therapy in the home nor were they comfortable making medication recommendations for an infant. The PPC team remained involved in Ally’s care to provide child life and art therapy services as well as to provide symptom management support.

Case 2

Julia was a 17-year-old female with multiply relapsed, refractory leukemia referred to PPC for pain management, coping, and elucidating goals of care. Initial PPC consultation was in-person, but subsequent PPC encounters largely occurred through telemedicine due to the COVID-19 pandemic. Initially, Julia wanted to focus on comfort and maximize her time at home while her mother wanted to pursue all available life-sustaining therapies. Over time, PPC was able to facilitate meaningful discussions between Julia and her mother that resulted in a mutually agreeable advance care plan involving home-based comfort care while continuing oral chemotherapy. As Julia’s disease progressed, she was referred to a primarily adult home hospice to provide medications, equipment, and end-of-life support. Julia was uncomfortable with several of the hospice’s recommendations, including medication administration per rectum and taking multiple sedating medications simultaneously, which persisted despite Julia asking for alternatives. Julia often refused or hid medications, which caused conflict between the family and the hospice. “I feel like I’m making her (the hospice nurse) mad, but it’s my body,” Julia shared.

PPC referred Julia to a different hospice and remained involved to assist with patient and family-centered clinical recommendations and care coordination.

Case 3

Mateo was a four-year-old with multiply relapsed alveolar rhabdomyosarcoma referred to PPC for symptom management, care coordination, and advance care planning. Mateo’s family wanted to pursue a mostly home-based comfort care plan but were worried about distressing end-of-life symptoms (e.g. pulmonary hemorrhage) that might be difficult to manage at home. Thus, the family wanted blood and platelet transfusions continued to mitigate this risk and for Mateo to remain Full Code so that intubation was possible. PPC referred Mateo to hospice and intake assessment occurred, but he was declined due to parental desire to remain Full Code. PPC provided education to hospice regarding typical timing of code status changes in pediatrics, and Mateo was admitted to hospice; however, he was subsequently discharged after he was hospitalized for a reversible illness and blood transfusion as the hospice stated that the family “does not have hospice goals.” PPC provided education on concurrent hospice care for children and agreed to remain available to support the patient, family, and hospice. Hospice re-admitted the patient and provided at-home care for Mateo’s end of life as well as bereavement support for the family.

Discussion

This case series highlights evolving challenges for pediatric patients and their families seeking to receive home-based hospice and palliative care (Table 1). All three patients were not only terminally ill with significant symptom burden, but they and their families also encountered substantial emotional distress relating to gaps in HBHPC services. These gaps are largely driven by access to and delivery of pediatric HBHPC services as well as unique aspects of pediatric patient and family-centered care.

Table 1.

Pediatric Home-Based Hospice and Palliative Care Gaps Exemplified by Case

Case	Gaps
Case 1	• Finding hospices that service children • Finding hospices that service rural areas • Hospices unaware of regulatory statutes around pediatric care • Hospices unable to provide full pediatric interdisciplinary compliment • Hospices lack knowledge/comfort in pediatric symptom management
Case 2	• Telemedicine as an effective means of providing HBHPC • Need to amplify pediatric/adolescent voice in provision of HBHPC • Hospice providers lack knowledge or comfort in adolescent/young adult care
Case 3	• Timing and implementation of pediatric advance directives • Lack of understanding of Concurrent Care • Frequent lapses in care/coverage by hospices • False dichotomy between PPC and hospice

Access to and Delivery of Pediatric HBHPC

Access. There are fewer than 40,000 pediatrics death per year in the United States,^15,16 yet an estimated 500,000 children need palliative care.¹⁷ The 2020 NHPCO Pediatric Needs Assessment identified that 71.5% of US counties lack access to home-based pediatric hospice and 81.2% are without pediatric home-based palliative care.¹⁸ Similarly, The Children’s Hospital Association 2020 registry notes that more than 50% of children’s hospitals report no access to home pediatric hospice services. All this informs the estimate that less than 30% of eligible pediatric patients have access to hospice services.¹⁹ Of those with access, most receive services through adult hospices.^20,21

These cases highlight that diminished pediatric access to hospice is exacerbated by several variables: geography, knowledge of and comfort in caring for pediatric patients, and understanding of regulatory statutes related to pediatric hospice provision. Previous research has established that children in rural areas lack access to end-of-life care.²² Indeed, there is less pediatric HBHPC in nonmetro compared to metro counties based on the 2020 NHPCO survey of hospices in the United States.¹⁸ The reasons for this are largely unclear, especially given the overall increase in access to hospice care for children over the past decade,²³ and do not mirror the geographic trends in adult hospice care.²⁴ Individual hospices’ organizational and administrative policies, poor reimbursement, as well as lack of pediatric-trained clinical staff, have been cited as possible reasons for the scarcity of rural pediatric HBHPC.²²

Care Delivery

Lack of knowledge, training, and comfort in pediatric-specific issues has been cited as a barrier to providing pediatric HBHPC in multiple areas of the country, regardless of rurality.^2,25,26 Cited sources of discomfort include pediatric pain and nonpain symptom management, sibling support, spiritual assessment, and bereavement care for children and families.²⁶ These areas of discomfort may lead to the issues highlighted in Cases 1 and 3, whereby hospices defer, believing they are unable to accept pediatric patients or acknowledge their lack of resources to do so in an interdisciplinary fashion.

Telehealth

Telehealth is an important adjunct to HBHPC. There is ample data to support that telehealth is feasible and acceptable to patients and families in HBHPC.^14,27,28 Recent research suggests that telehealth may benefit this population as it can provide support for patients, families, and hospice nurses in the end-of-life setting²⁹ and may be particularly beneficial in “conversational” palliative interventions such as discussing goals of care and assessing caregiver well-being.³⁰ More research is needed to determine the optimal role and efficacy of telehealth in HBHPC and in all of PPC.^31,32

Policy Interpretation

Another barrier to patients and families receiving pediatric HBHPC is the variable understanding of pediatric hospice eligibility. Children are often required to meet the hospice eligibility criteria created for Medicare beneficiaries: a terminal diagnosis with a prognosis of 6 months or less “if the disease runs its normal course.”^33,34 This standard is very difficult to apply to seriously ill children as their diagnoses are many and varied with prognoses that are often impossible to predict. Strict interpretation of the benefit or lack of information about what describes the “normal course” may mean that many children are ineligible for hospice services. Reformation of pediatric-specific hospice eligibility is greatly needed.

Similarly, lack of understanding of “Concurrent Care” hospice can impede pediatric hospice initiation. Section 2302 of the Patient Protection and Affordable Care Act of 2010 opened the option for hospice care to many more children with serious illness by allowing patients under 21 years of age with public insurance to receive hospice services “concurrent” with curative therapies.³³ This statute, often referred to as “Concurrent Care,” is frequently misunderstood,³⁴ and patients and families are denied hospice services if they wish to continue to pursue disease-directed therapies, as in Case 3. Hospice providers and payers need further education to ensure children are offered appropriate hospice services.

Partnering of Adult Hospices With PPC

Given that population numbers and reimbursement issues will likely never support widespread specialty pediatric hospice programs, a clear need exists for increased partnerships between adult-centered community hospices and hospital-based PPC programs. Research is needed to identify knowledge gaps within adult-centered hospices, family- and patient-perspectives on their needs from community-based programs, and the role of telehealth in mitigating pediatric HBHPC access issues.^23,29,31

Unique Aspects of Pediatric Patient and Family-Centered Care

In HBHPC, pediatric as well as adolescent and young adult (AYA) patients may have specific physical needs as well as communication needs that are important in decision-making and advance care planning (ACP).

Clinical Care

In PPC, patients may require certain medications, medication dosing, or equipment determined by their age, developmental stage, and/or size. As demonstrated in Case 2, medication administration route may also need to be carefully considered in pediatric and AYA patients due to the patient’s ability to take medications or patient and family preference. In this case, Julia did not want to take medications rectally, as advised by the hospice nurse who was presumably used to caring for adult patients. Unique pediatric issues such as these should be considered carefully as HBHPC teams develop their medication formularies and nursing protocols and assemble their care teams.

Decision Making

Current research reveals the unique decisional needs of the AYA population facing end of life. Simply put, they want to have their wishes known. AYAs also have wishes that parents may be unaware of or in disagreement with, especially regarding code status.^35,36 What is less known is how this unfolds in the home and the role of home HBHPC to support these conversations. Case 2 showcases the unique decisional space comprised of the AYA voice, the caregiver, and the provider when making end-of-life decisions. It also highlights their need to be involved in care decisions. Future research needs to capture the AYA voice specific to the home setting so that processes, including staffing and metrics, can be determined to optimize their home palliative care and hospice experiences.

Advance Care Planning

Advance Care Planning (ACP) is different in pediatrics than in adult hospice and palliative care due to the variable prognoses inherent in pediatric diagnoses and the family unit as the patient, many times with the parents as proxy decision makers. As pediatric patients provide assent rather than consent, ACP is a triadic, shared decision-making process among the patient, caregivers, and provider, the outcomes of which may change over time as the patient’s clinical condition or the family’s goals of care shift.

Advance Directives

Another important distinction between pediatric and adult ACP is advance directives. Typically, adult hospice admissions are accompanied by a Do-Not-Resuscitate (DNR) order.³⁷ While reversible and not legally obligatory, a DNR confers an assurance that the patient understands his/her mortality and is unlikely to utilize hospital-based life-prolonging interventions, giving hospices confidence that the patient and family embrace a hospice model of care. In pediatric ACP, there has been a shift away from advance directives and toward family engagement, as focusing on the former may contribute to family reluctance to participate in ACP discussions and may not be predictive of end-of-life care choices.³⁸ Case 3 highlights the dissonance that can occur when home hospice is sought for pediatric patients lacking a DNR at the time of referral and/or whose goals of care include seeking hospital support. More research and education are needed to improve the understanding and expand the practice of ACP in pediatrics throughout the HBHPC continuum.

Funding and Financing

Current payment models, including the Medicare Hospice Benefit, preclude widespread availability of palliative care teams specializing in pediatric home-based care. Most PPC programs have lengths of stay that far exceed hospice eligibility. To engage at diagnoses of a life-threatening condition and offer the full complement of services necessary to guide families through goal-concordant care along a fluctuating and unpredictable trajectory, teams depend on fee-for-service coverage for a few select members of the team (e.g., physicians, psychologists, and, in some states, dietitians and social workers), philanthropy, and/or creative funding models, such as waivers, state plan amendments, or even insurance-based programs, among other strategies. These provisions are neither consistent across states or even counties, nor widely available. Further, they significantly undervalue the crucial expertise brought by “nonreimbursed” members of the team such as child life specialists, chaplains, expressive therapists, bereavement professionals, case managers, and other professionals on whom families and even care outcomes depend.

Summary

This case series highlights the significant physical and emotional distress endured by patients and families with life-limiting conditions who experience difficulty in obtaining continuous, comprehensive, and high-quality HBHPC. In an effort to develop quality domains and best practices in HBHPC, we recommend further research, particularly into the efficacy of telehealth as a mode of delivery of HBHPC, optimal ways to partner adult hospices with PPC, and regarding the AYA voice in treatment and care decisions relating to HBHPC. In addition, we advocate for widespread educational efforts for adult hospice providers on the care of and communication with pediatric patients and families as well as current statutes pertaining to HBHPC. Lastly, we encourage continued conversations about pediatric hospice reform and payment models that enable creation and sustainability of interdisciplinary pediatric HBHPC in the United States.

Key Message.

This case series highlights the current challenges in pediatric home-based hospice and palliative care (HBHPC) driven by a dearth of access and pediatric-specific hospice knowledge. Access issues arise for several key reasons: lack of pediatric and adolescent-focused care teams in communities; insufficient comfort and knowledge of adult teams to care for pediatric patients; and inadequate reimbursement. Lack of knowledge about hospice regulations (i.e., concurrent care hospice; if an adult program is “allowed to care for a child”) compounds the issues. Research, education, and advocacy are necessary to promote high-quality, continuous, and comprehensive HBHPC for children and families.