Current situation, challenges and future trends of pediatric palliative care from a multi-dimensional perspective: a narrative review

Introduction

Background

Pediatric palliative care (PPC) is defined by the World Health Organization as active total care of the child’s body, mind, and spirit, together with support for the family; it begins when illness is diagnosed and continues regardless of whether disease-directed treatment is provided (1). International PPC standards, including Global Overview-PPC Standards (GO-PPaCS)/International Meeting for Palliative Care in Children, Trento (IMPaCCT), similarly emphasize early, family-centered, interdisciplinary care for children and adolescents with life-threatening or life-limiting conditions (2). PPC is not limited to children younger than 14 years; internationally accepted frameworks generally include children and adolescents up to 18 or 19 years of age, and transition care may extend support into young adulthood when serious illness continues beyond pediatric services. Compared with adult palliative care, PPC must account for developmental stage, disease spectrum, communication capacity, dependence on family caregivers, and evolving participation of the child in decision-making (3,4).

Service delivery is also shifting from a hospital-centered model toward a more flexible continuum that links tertiary hospitals, community resources, home-based services, and hospice programs. The central implication of this shift is not simply that more service locations are needed, but that children and families require continuity across changing illness trajectories. Parallel care, in which palliative care is delivered alongside disease-modifying treatment, can reduce the false choice between active treatment and comfort-focused support. However, referral pathways from hospital PPC teams to home hospice care or home-based palliative care remain inconsistent, and access is strongly affected by workforce availability, reimbursement, geography, and the clarity with which palliative care, hospice care, and end-of-life care are distinguished in each health system (5-10).

Taken together, the literature suggests that the main barrier to PPC development is not a single missing intervention, but the absence of an integrated system that combines shared definitions, individualized symptom management, family-centered decision support, professional training, and quality improvement. Studies on parental perceptions of safe care, professional judgments about appropriate care, home-based symptom control, and national quality-improvement networks illustrate complementary parts of the same problem: PPC must be clinically competent, ethically clear, emotionally supportive, and measurable as a service system (11-14). This review therefore interprets individual studies within a broader framework of concept formation, service accessibility, workforce capacity, policy support, and future implementation.

Previous reviews and consensus documents have clarified PPC definitions, standards, communication needs, and selected clinical practices, but many papers focus on one dimension at a time, such as oncology, hospice referral, communication training, or regional service mapping. A multidimensional review is needed because the barriers to PPC implementation are not isolated: definitions affect referral, financing affects home care, medicine access affects symptom control, and culture affects communication. The purpose of this review is therefore not only to describe global PPC practices, but to connect conceptual, clinical, service-system, workforce, policy, and digital-health evidence into an implementation-oriented framework.

Objectives

This narrative review is intended for clinicians, educators, service leaders, and policymakers involved in pediatric serious illness care. It addresses four focused questions: how PPC should be defined and distinguished from hospice and end-of-life care; how global PPC models differ across policy, hospital, community, and home-care settings; what structural, cultural, workforce, financing, and ethical barriers currently limit access; and which practice and implementation directions are most relevant for China and other diverse health-system contexts. Rather than presenting studies as isolated findings, we use a multidimensional framework to compare evidence across service models, education and training, policy and financing, family-centered practice, and digital health. We advocate that the future development of PPC requires both standardized core principles and locally adaptable implementation pathways (14-16) (Figure 1). We present this article in accordance with the Narrative Review reporting checklist (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0343/rc).

Figure 1 A multi-dimensional framework for pediatric palliative care improvement. The figure organizes PPC development across three linked layers: policy and service systems, hospital-based care, and community/home-based care. These layers are used in Section “The multi-dimensional connotations and global current situation of PPC” to compare how guidelines, financing, referral pathways, specialist teams, community resources, and family support interact across different regions and health-system contexts. PPC, pediatric palliative care.

Methods

A Scale for the Assessment of Narrative Review Articles (SANRA)-informed narrative review was conducted to synthesize literature on PPC across clinical practice, psychosocial support, ethics, policy, financing, workforce development, service delivery, and digital health. PubMed was used as the primary bibliographic database. To reduce omission of consensus and implementation material, supplementary targeted searches of the Cochrane Library and authoritative organizational sources, including World Health Organization (WHO), United Nations International Children’s Emergency Fund (UNICEF), International Children’s Palliative Care Network (ICPCN), and major PPC guideline documents, were also performed. The PubMed search was conducted on January 15, 2026 for studies published from January 1, 2010 to December 31, 2025, using the following title/abstract search string: (“pediatric palliative care” OR “paediatric palliative care” OR “pediatric hospice” OR “paediatric hospice” OR “pediatric end-of-life care” OR “paediatric end-of-life care”). This PubMed search identified 1,852 records. Titles and abstracts were screened for relevance to the review questions, and full texts were assessed when studies addressed PPC definitions, service models, access barriers, symptom management, psychosocial-spiritual support, family-centered decision-making, education, policy, financing, digital health, or regional implementation. Because this was a narrative review rather than a systematic review or meta-analysis, no quantitative pooling or formal risk-of-bias scoring was performed. Data were extracted narratively into thematic domains and synthesized by comparing recurring findings, implementation barriers, regional differences, and practice implications. Table 1 summarizes the search and synthesis process.

The multi-dimensional connotations and global current situation of PPC

Core concepts, principles and target audience

Conceptually, PPC should be distinguished from hospice care and end-of-life care while recognizing that these constructs overlap in practice. PPC is a broad approach that can begin at diagnosis and continue alongside disease-directed treatment, providing symptom management, psychosocial-spiritual support, communication support, decision-making assistance, and bereavement care (1,2,17). Hospice care usually refers to a service model for patients with limited life expectancy and often includes home- or hospice-based support, respite care, and terminal care. End-of-life care is a narrower phase of care near death. Confusing these terms can delay referral and reinforce the misconception that PPC means giving up treatment. The target population includes children and adolescents with cancer, congenital anomalies, genetic and metabolic disorders, neurodegenerative diseases, severe complications of prematurity, complex chronic conditions, and technology dependence after severe illness or trauma (2,17). This hierarchy of definitions is important because foundational claims should be anchored in WHO and international consensus standards, while regional studies and case reports should be used for service examples rather than for universal definitions (18).

Global development models and regional differences

Figure 1 provides the organizing logic for comparing PPC development across three interacting layers: policy and service systems, hospital-based care, and community/home-based care. At the policy and service-system layer, high-income countries such as the United Kingdom, United States, Canada, Italy, and some Western European countries generally have more established guidelines, specialist teams, funding mechanisms, and referral pathways (2,19,20). At the hospital-based layer, even resource-rich systems still face fragmentation, late referral, and variable family experience, showing that infrastructure alone does not guarantee high-quality PPC (21,22). At the community/home-based layer, middle- and low-resource settings, including Brazil, Pakistan, South Africa, and parts of Latin America, often face limited opioid access, shortages of trained professionals, weak reimbursement, and cultural misunderstanding of PPC (23-26). This layered comparison suggests that regional examples should not be treated as isolated anecdotes; they illustrate how system architecture, access, workforce, policy and funding, and cultural factors interact. In mainland China, PPC development remains emerging and uneven. Existing Chinese evidence emphasizes spiritual-care competence among nurses and the emotional growth and burden of pediatric providers caring for terminally ill children (27,28). These findings suggest that China-specific PPC development should prioritize professional training, culturally acceptable communication, family support, and integration of PPC into existing pediatric hospital and community-care pathways (29).

Analysis of the core challenges and obstacles currently faced

Across the reviewed literature, the core challenges of PPC can be understood as interacting barriers at three levels: meaning, access, and capability. Conceptual and cultural barriers shape whether families and professionals accept PPC early; service-system barriers determine whether support can actually be delivered outside specialized centers; and workforce, education, and policy barriers influence whether care is consistent, ethical, and sustainable. The following subsections therefore interpret the evidence by theme rather than treating each study as a separate observation.

Conceptual cognition and cultural and social barriers

Conceptual and cultural barriers often arise because PPC is incorrectly equated with therapeutic abandonment or imminent death. This misunderstanding delays referral, especially in oncology, intensive care, and other settings where disease-directed treatment may continue for months or years (30,31). Evidence from pediatric death audits and communication studies indicates that families and clinicians may avoid explicit discussions about prognosis, treatment goals, and end-of-life preferences, even when such conversations could reduce conflict and improve alignment of care (32,33). These barriers are intensified by cultural and religious differences, parental uncertainty, and differing expectations between families and professionals (34-37). In our view, the practical response is not to replace curative language with palliative language abruptly, but to introduce PPC as supportive, family-centered care that can coexist with active treatment and help clarify values over time. In non-Western settings, the term “PPC” may be unfamiliar or associated with abandonment, so culturally adapted language such as supportive care, comfort-focused support, serious-illness support, or family-centered supportive care may be more acceptable when it accurately preserves the core principles of PPC.

Challenges in service system and resource accessibility

Resource accessibility is uneven across and within countries, and the problem is best understood as a service-system gap rather than a simple shortage of individual programs. PPC services are often concentrated in large urban hospitals, while primary care, community services, and home-based support remain underdeveloped (23,26). Examples from Brazil, Luxembourg, Korea, South Africa, Pakistan, and the United States show different manifestations of the same structural issue: limited workforce, weak referral networks, inadequate reimbursement, restricted access to pediatric formulations of essential medicines, and insufficient community capacity (23,24,26,38-42). The evidence also suggests that high-income countries are not exempt from access problems; rather, they face different gaps, such as fragmented insurance coverage or uneven availability of home-based services. Therefore, improving access requires a tiered model in which specialist PPC teams support community and primary-care providers instead of functioning as isolated referral endpoints.

Professional competence and education and training gap

Workforce capacity is a recurring constraint across PPC systems. The available evidence does not merely show that training programs are scarce; it shows that PPC requires competencies that are difficult to acquire through routine pediatric training alone, including serious-illness communication, symptom assessment, spiritual care, cross-cultural practice, ethical decision-making, and interprofessional teamwork (2,39,43-47). Communication-skills interventions and simulation-based education appear promising, but studies remain heterogeneous and often use short-term confidence or performance outcomes rather than patient- or family-centered endpoints (44,48). We therefore interpret education and training as infrastructure for PPC, not as an optional professional-development activity. Sustainable PPC systems need standardized curricula, continuing certification pathways, and team-based learning that includes physicians, nurses, social workers, psychologists, spiritual-care providers, and community practitioners. The summary is shown in Figure 2.

Figure 2 A holistic care model for pediatric palliative care. The figure summarizes four practice complexes that structure the analysis in Section “The latest progress and evidence-based basis in key practice areas”: multimodal symptom management, psychosocial-spiritual support, family-centered care and shared decision-making, and healthcare staff capability. The model is intended to show that PPC quality depends on the integration of clinical care, family communication, emotional-spiritual support, and workforce capacity rather than on any single intervention or technology. PPC, pediatric palliative care.

Policy, financing and ethical legal dilemmas

Policy, financing, and ethical-legal structures determine whether PPC can move from professional aspiration to routine care. Many countries and regions lack national PPC plans, minimum service standards, sustainable reimbursement, and clear referral pathways (2,26). Funding gaps limit home care, respite care, essential medicines, and specialist consultation, and socioeconomic disadvantage is associated with lower access to end-of-life care services and higher-intensity hospital care near death (42,49). Ethical challenges include assessing minors’ evolving decision-making capacity, clarifying the limits of parental proxy decision-making, communicating about withholding or withdrawing life-sustaining treatment, and balancing nonmaleficence, best interests, and family values (32,50-52). These issues are especially complex when PPC intersects with organ donation, oncology quality measures, child protection concerns, or disagreements about treatment goals (50,51,53). The evidence suggests that PPC policy should therefore combine financing, legal clarity, ethics consultation, and communication training rather than treating ethics as a separate bedside problem.

The latest progress and evidence-based basis in key practice areas

The evidence base in key practice areas is uneven. Some areas, such as pain and symptom assessment, family communication, and psychosocial support, are supported by a growing body of pediatric evidence. Other areas, including digital legacy-making, selected non-pharmacological interventions, and technology-enabled monitoring, remain promising but less mature. For this reason, the following section synthesizes findings according to clinical function and implementation readiness rather than listing individual interventions sequentially. Figure 2 is used as the conceptual backbone for this section: multimodal symptom management is discussed in Section “Symptom management and comfort care”, psychosocial-spiritual support in Section “Psychosocial and spiritual support”, and family-centered care, shared decision-making, and healthcare staff capability in Section “Family-centered care and decision-making sharing” and the subsequent capacity-building discussion.

Symptom management and comfort care

Symptom management remains the most clinically concrete domain of PPC, but the evidence should be interpreted as support for individualized, multimodal care rather than as endorsement of isolated techniques. Pharmacological approaches, including opioid rotation and adjuvant analgesics such as methadone, may be useful for selected children with complex nociceptive or neuropathic pain, but they require specialist assessment, careful monitoring, and attention to age-specific dosing and adverse effects (54). Non-pharmacological approaches, including touch, music, art-based interventions, comfort positioning, and selected legacy-building practices, can complement medication-based care by addressing anxiety, comfort, memory-making, and family grief (55,56). Evidence from subcutaneous fluid use, extracorporeal membrane oxygenation (ECMO)-associated palliative care, pediatric neurology, and hospice settings illustrates the breadth of symptom needs, including dyspnea, nausea, hydration concerns, distress, and caregiver burden (57-59). The main conclusion is that PPC symptom care should be organized around repeated assessment and family goals, rather than around a fixed menu of interventions.

Psychosocial and spiritual support

Psychosocial and spiritual support are core PPC functions because serious pediatric illness affects the child, parents, siblings, grandparents, and clinical team simultaneously. The reviewed studies converge on three practical principles. First, communication should be developmentally tailored so that children receive information in ways that match their age, cognition, illness experience, and preferences (60). Second, support should extend beyond parents to include grandparents and other family members who may provide care while also experiencing anticipatory grief and emotional distress (61). Third, spiritual care should be understood broadly as attention to meaning, hope, connection, fear, legacy, and uncertainty, rather than as religious counseling alone (27,62). These findings indicate that psychosocial-spiritual care is not an adjunct to symptom management; it is one mechanism through which PPC preserves dignity and family functioning.

Family-centered care and decision-making sharing

Family-centered care and shared decision-making provide the ethical and operational foundation of PPC. Families are not only visitors or informal helpers; they are co-interpreters of the child’s values, symptoms, routines, and acceptable trade-offs. Evidence from end-of-life cancer care, British children’s hospice services, perioperative decision-making, serious-illness conversation tools, caregiver mental health research, and electronic health-record interventions points to a common need: communication systems that make goals, preferences, responsibilities, and care plans visible across teams (28,55,63-67). However, family-centered care should not mean transferring the burden of complex decisions to parents without professional guidance. A stronger PPC model combines honest prognostic communication, structured decision aids, psychosocial support, respite resources, and staff support so that families and clinicians can share decisions without abandoning either medical responsibility or family values.

Future development trends and strategic directions

Integration and extension of service models

Early integration is a central future direction, but its feasibility depends on system design. PPC should be introduced when a child is diagnosed with a life-threatening or life-limiting condition, when disease complexity increases, or when families face difficult trade-offs, not only when death is imminent. Evidence from complex chronic disease, hematopoietic stem cell transplantation, and screening tools suggests that early PPC can clarify values, support symptom planning, and identify families who need additional resources (36,68,69). However, early integration will remain aspirational unless referral criteria, community pathways, and reimbursement mechanisms are built into routine pediatric care. We therefore interpret early PPC as a service model requiring operational triggers, not simply as a philosophical recommendation. In low-resource settings where basic analgesics such as oral morphine may be unavailable, early integration should not be presented as immediate access to specialist services alone. A more feasible pathway is stepwise integration: basic symptom assessment, communication training, family support, referral triggers, access to essential medicines, and community follow-up should be built into existing pediatric and primary-care services before more specialized models are scaled.

Technological innovation and digital health applications

Digital health and artificial intelligence may support PPC, but they should be treated as enabling tools rather than substitutes for relational care. Symptom-reporting systems, remote monitoring, telemedicine, virtual reality, and decision-support tools may improve timeliness of assessment and continuity between hospital and home, particularly for children who live far from specialist centers (70,71). At the same time, digital tools may reproduce inequities if families lack internet access, digital literacy, language support, or trust in remote care. Big-data approaches can help identify research gaps and align resources with underrepresented regions, but their outputs must be interpreted within ethical, cultural, and implementation contexts (25). The key question is therefore not whether technology can expand PPC, but which technologies are acceptable, equitable, clinically meaningful, and sustainable for children and families.

Capacity building, research and advocacy

Capacity building, research, and advocacy are the conditions that determine whether PPC can move from isolated excellence to routine availability. Training should be embedded in undergraduate, postgraduate, nursing, and allied-health curricula, with continuing education for practicing clinicians and community providers (43,72). Research priorities should shift from describing need toward evaluating implementation, cost-effectiveness, family outcomes, symptom burden, and scalable service models, particularly in low- and middle-income countries (25). Advocacy is also necessary because PPC depends on policy decisions about essential medicines, insurance coverage, workforce recognition, data systems, and home-based care. These priorities are interdependent: research without policy influence will not change access, and policy without trained professionals will not produce compassionate care (73).

Limitations

There are several limitations in this study. First, it is a narrative review rather than a systematic review, and therefore the selection and interpretation of literature may be influenced by author judgment. Second, the search relied primarily on PubMed, supplementary targeted searches, and English-language or English-abstract sources; the absence of fully systematic searches in Embase, CINAHL, PsycINFO, LILACS, and other regional databases may underrepresent regional literature, non-English publications, and grey literature from low- and middle-income countries. Third, much of the available evidence comes from high-income settings in North America, Europe, and selected Asian contexts, limiting generalizability to health systems with fewer specialist teams, less stable financing, or restricted access to essential palliative medicines. Finally, the evidence base is heterogeneous across domains: symptom management and communication have stronger pediatric foundations than digital health, workforce models, cost-effectiveness, and implementation strategies. These limitations should be considered when applying the review findings to specific countries or service settings.

Conclusions

PPC should be understood as a core component of serious pediatric illness care, not as a late-stage alternative to treatment. This review synthesizes evidence for PPC through the same domains discussed in the main text: definitions and target populations, service models, cultural and access barriers, workforce capacity, policy and ethics, symptom management, psychosocial-spiritual support, family-centered decision-making, digital health, and implementation in diverse regions.

The evidence base is strongest where PPC addresses recurring clinical and family needs: symptom assessment, pain and distress management, communication, psychosocial-spiritual support, and shared decision-making. Nevertheless, a persistent gap remains between available evidence and routine access. This gap is produced by outdated perceptions of PPC, limited professional training, weak referral pathways, inadequate financing, medication-access barriers, and insufficient community-based services.

No single PPC model can be transplanted unchanged across countries. Specialist team models in high-income settings offer expertise but may be expensive and unevenly distributed, whereas primary-care, community, or volunteer-supported models may improve reach but require training, supervision, and quality safeguards. A realistic global approach should therefore combine universal principles—early support, family-centered communication, symptom relief, dignity, and continuity—with locally adapted pathways that reflect culture, resources, workforce, and policy capacity.

Future development should prioritize four linked actions that follow directly from the reviewed evidence: integrating PPC into routine pediatric care from diagnosis or recognition of serious illness; building tiered service networks that connect hospitals, communities, homes, and hospices; embedding PPC competencies in medical, nursing, and allied-health education; and strengthening policy mechanisms for financing, essential medicines, data collection, and quality evaluation. For China and other health systems undergoing PPC development, this means adapting international standards to local needs rather than copying a single external model.

Ultimately, PPC is a measure of how health systems respond when cure is uncertain, suffering is complex, and families need sustained support. Technological innovation, digital tools, and new service models are valuable only when they reinforce the central commitments of PPC: relieving suffering, respecting the child and family, supporting difficult decisions, and preserving dignity throughout the illness trajectory.

Acknowledgments

None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0343/rc

Peer Review File: Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0343/prf

Funding: This study was supported by the Zhejiang Provincial Medical and Health Science and Technology Program (No. 2025KY932B).

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0343/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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