Ethical dilemmas and intervention strategies in doctor-patient-family communication in end-of-life pediatric oncology: a narrative review

Abstract

Background and Objective

Communication in end-of-life pediatric oncology involves ethically sensitive exchanges among healthcare providers, children, and families. The main dilemmas include how to disclose prognosis without abandoning hope, how to balance parents’ surrogate authority with the child’s evolving participation, and how to align treatment decisions with family values, developmental capacity, and the child’s best interests. This narrative review clarifies the conceptual scope of these dilemmas, synthesizes evidence on their psychological, institutional, and sociocultural determinants, and summarizes intervention strategies that may support shared decision-making, advance care planning, family-centered care, and goal-concordant care.

Methods

A narrative review was conducted using PubMed/MEDLINE as the core biomedical database, supplemented by citation chasing and searches of Web of Science, Scopus, PsycINFO, CINAHL, Google Scholar, and reference lists of key pediatric palliative care publications. The primary search covered January 1, 2015, to March 31, 2026; seminal pre-2015 literature was retained only when it provided foundational ethical or communication concepts. Search concepts included pediatric oncology, childhood cancer, pediatric tumors, end-of-life care, palliative care, communication, truth-telling, shared decision-making, advance care planning, parental decision-making, child autonomy, and ethical dilemmas. The evidence was synthesized thematically rather than statistically.

Key Content and Findings

The review identified three interrelated ethical communication domains: truth-telling and protective disclosure; parental surrogate decision-making and the child’s developing autonomy; and the timing and manner of prognostic and goal-of-care communication. Across the literature, communication challenges are shaped by clinician moral distress and avoidance, family grief and protective instincts, institutional barriers to early palliative care integration, and diverse cultural, religious, and socioeconomic preferences. Intervention evidence remains heterogeneous and is often derived from qualitative, observational, or small-scale training studies. Nevertheless, structured communication training, multidisciplinary family meetings, early pediatric palliative care involvement, ethics consultation, psychological support, and developmentally appropriate child participation appear clinically promising when implemented with attention to family preferences and local context.

Conclusions

Ethical communication in end-of-life pediatric oncology should be understood as a longitudinal, relational process rather than a single disclosure event. Current evidence supports cautious use of structured communication training, multidisciplinary collaboration, family-centered psychological support, shared decision-making, and advance care planning, but stronger longitudinal and culturally diverse studies are needed. Future work should avoid one-size-fits-all disclosure models and should develop tools that protect children’s data, respect developmental capacity, and promote goal-concordant care.

Introduction

Background and conceptual definitions

Children with advanced or incurable cancer face a clinical situation in which prognosis, suffering, treatment burden, and family hopes must be discussed under conditions of uncertainty. In this review, the terms end-of-life care and terminal care refer to the phase in which cure is no longer realistically expected, disease-directed treatment is unlikely to provide meaningful benefit, and communication increasingly focuses on comfort, quality of life, goals of care, and preparation for death. To improve consistency, pediatric oncology is used as the umbrella term for both solid tumors and hematologic malignancies in children and adolescents, unless a cited study is limited to one diagnostic group. Malignancy, cancer, and tumor are therefore not used as interchangeable conceptual categories; rather, they refer to the disease context in which end-of-life communication occurs.

An ethical dilemma is defined here as a situation in which two or more ethically defensible obligations conflict and no option fully satisfies all relevant values. In end-of-life pediatric oncology, such dilemmas commonly arise when clinicians must balance honesty with protection from psychological harm, parental authority with the child’s developing autonomy, hope with realistic preparation, and family-centered decision-making with the child’s own voice. These conflicts are not merely theoretical. They influence whether children are included in conversations, whether families understand the likely trajectory of illness, whether palliative care is introduced early, and whether final care aligns with the child’s values and family priorities.

The pediatric oncology setting deserves specific attention because end-of-life conversations occur within a triadic relationship among clinicians, parents or guardians, and the child. Unlike in adult oncology, decision-making authority is legally held by parents in most jurisdictions, yet many children and adolescents can understand aspects of their illness and express meaningful preferences. Family-centered care therefore requires more than parental consent. It requires clinicians to assess the child’s developmental capacity, emotional readiness, preferred level of involvement, and family communication style, while also supporting parents who may be experiencing anticipatory grief, guilt, fear, or decisional burden.

Contemporary pediatric palliative care frameworks further emphasize shared decision-making, advance care planning, goal-concordant care, relational autonomy, and progressive child participation. These models shift the focus from a binary conflict between truth-telling and protection toward an ongoing process of partnership. In this process, clinicians provide honest information in manageable steps, elicit family values, revisit goals as the illness evolves, and help children participate to the extent that they are able and willing. This approach also avoids simplistic cultural assumptions. Families within the same region or religious community may differ substantially in their expectations about disclosure, decision-making, and the meaning of hope.

Despite growing interest in communication and ethics in pediatric palliative care, the literature remains scattered across oncology, nursing, psychology, bioethics, intensive care, and palliative care journals. Prior work has examined truth-telling, parental decision-making, clinician moral distress, communication training, and family bereavement support, but these areas are often discussed separately. A clearer synthesis is needed to define the key ethical dilemmas, identify their determinants, evaluate available interventions cautiously, and highlight gaps in evidence quality, cultural adaptation, and child-centered outcomes.

Objective

This review explores ethical dilemmas in doctor-patient-family communication in end-of-life pediatric oncology, explains the psychological, institutional, and sociocultural factors that shape these dilemmas, evaluates current intervention strategies with cautious attention to evidence limitations, and discusses future directions for shared decision-making, advance care planning, goal-concordant care, family-centered support, and developmentally appropriate child participation. We present this article in accordance with the Narrative Review reporting checklist (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-0680/rc).

Methods

A narrative review methodology was used because the topic includes heterogeneous qualitative evidence, ethical analysis, clinical guidelines, communication training studies, and conceptual frameworks that are not suitable for quantitative pooling. Searches were structured around four concepts: pediatric oncology or pediatric palliative care; end-of-life or terminal care; communication or decision-making; and ethical dilemmas or intervention strategies. PubMed/MEDLINE was used as the core biomedical source, supplemented by searches of Web of Science, Scopus, PsycINFO, CINAHL, and Google Scholar, as well as citation chasing and screening of reference lists from key pediatric palliative care publications. The final synthesis included empirical studies, clinical guidelines, systematic or scoping reviews, narrative reviews, and consensus-oriented publications that were directly relevant to communication and ethical decision-making in pediatric oncology or closely related pediatric palliative care settings.

Search strategy and sources

The complete search framework is shown in Table 1. Search strings were adapted for each database because indexing terms differ across biomedical, nursing, psychology, and ethics databases. MeSH terms and free-text terms were combined where available. Citation chasing was used for key articles on pediatric palliative care communication, advance care planning, truth-telling, parental decision-making, and clinician moral distress.

Table 1. Search strategy and selection framework.

Items	Specification
Date of search	March 31, 2026
Databases and sources searched	PubMed/MEDLINE was the core biomedical database. To reduce single-database bias, supplementary searches and citation chasing were added through Web of Science, Scopus, PsycINFO, CINAHL, Google Scholar, and reference lists of key pediatric palliative care and ethics publications
Search terms and strategy	“Pediatric tumors”, “Doctor-patient communication”, “Ethical dilemmas”, “Intervention strategies”, and “End-of-life care”
Timeframe	From January 1, 2015, through March 31, 2026
Inclusion and exclusion criteria	Inclusion criteria: English-language empirical studies, qualitative studies, mixed-methods studies, intervention or training studies, consensus statements, clinical guidelines, systematic reviews, scoping reviews, and high-quality narrative reviews addressing communication, ethical decision-making, advance care planning, shared decision-making, truth-telling, family-centered care, or psychosocial support in pediatric oncology or closely related pediatric palliative care contexts
	Exclusion criteria: Studies were excluded if they were unrelated to pediatric end-of-life oncology or pediatric palliative care communication; focused only on adult oncology without transferable pediatric relevance; addressed general adolescent risk behavior without communication or ethical decision-making relevance; lacked accessible full text; or duplicated data already represented by a more complete report
Selection process	The search outcomes were meticulously scrutinized by two authors (J.Z. and D.L.), who adhered strictly to the predefined inclusion and exclusion criteria. In instances where discrepancies arose, a third reviewer (Y.B.) was involved to provide an impartial decision. All authors approved the final list of references

Eligibility criteria and study selection

Eligible publications addressed pediatric oncology or closely related pediatric palliative care and included at least one of the following topics: prognosis communication, truth-telling, parental surrogate decision-making, child participation, shared decision-making, advance care planning, ethics consultation, communication skills training, psychological support, bereavement-oriented family interventions, or culturally sensitive communication. Publications were excluded when their focus was unrelated to pediatric end-of-life communication or when pediatric relevance could not be established.

Data extraction and synthesis

The included literature was summarized in a thematic extraction matrix. Extracted information included author/year, country or setting, study design or publication type, participant group, communication or ethical focus, major findings, and limitations. Findings were synthesized narratively across conceptual and clinical domains rather than statistically pooled, because study designs and outcomes were heterogeneous.

Literature selection and characteristics of included evidence

The final evidence base consisted of key empirical studies, qualitative studies, mixed-methods studies, communication intervention reports, pediatric palliative care guidelines, systematic or scoping reviews, and narrative or ethics-focused publications. The literature was grouped into six domains: conceptual and ethical foundations; truth-telling and child participation; parental decision-making and family communication; clinician, team, and institutional barriers; intervention strategies; and future directions including digital or artificial intelligence (AI)-supported tools. Table 2 summarizes the major evidence domains and the limitations that informed the interpretation of this review.

Table 2. Characteristics and thematic contribution of included evidence.

Evidence domain	Representative references	Study types/settings	Participants or focus	Main contribution to this review	Main limitations
Conceptual and ethical foundations	(1-8)	Ethics analyses, pediatric communication studies, and narrative reviews	Children with life-threatening illness, parents, clinicians	Defines child participation, truth-telling, hope, prognosis communication, and ethical responsibilities in pediatric care	Several foundational references predate the primary search period but were retained because they establish core concepts
Truth-telling and child participation	(7,9-12)	Qualitative and mixed pediatric oncology/palliative care literature	Children, adolescents, parents, and clinicians	Supports developmentally appropriate disclosure, evolving autonomy, and triadic communication among child, family, and clinicians	Child self-report evidence remains limited, especially in terminal-phase settings
Parental decision-making and family communication	(10,13-16)	Qualitative studies, systematic reviews, and family communication intervention literature	Parents, caregivers, and family members	Shows that parental decisions are shaped by hope, grief, uncertainty, family values, and communication experiences	Evidence is heterogeneous and often relies on parent or caregiver reports
Clinician, team, and institutional barriers	(17-24)	Qualitative studies, ethics consultation reviews, guideline or implementation studies	Oncology clinicians, nurses, palliative care teams, and ethics services	Identifies moral distress, fragmented team communication, late palliative care referral, and lack of structured communication pathways	Findings are frequently single-center or context-specific
Intervention strategies	(12,15,16,20,24-28)	Training studies, guidelines, psychoeducational interventions, and pediatric palliative care frameworks	Clinicians, families, and interdisciplinary teams	Supports cautious use of communication training, structured family meetings, advance care planning, family-centered care, and psychological support	Intervention evidence is often feasibility-oriented and not consistently linked to long-term child or family outcomes
Future directions and digital tools	(12,29,30)	Reviews and contemporary framework papers	Palliative care systems, digital or AI-supported communication, and shared decision-making models	Highlights the need for culturally responsive frameworks, data-protection safeguards, and validated tools for pediatric communication support	AI-supported communication remains speculative and requires prospective validation and governance

AI, artificial intelligence.

Ethical dilemmas in end-of-life communication for pediatric oncology patients

Balancing truth-telling, hope, and protection from harm

The first ethical tension concerns whether, when, and how children should be told about disease progression, dying, and the limits of further treatment. A protective approach may be ethically motivated when clinicians and parents fear that disclosure will intensify anxiety, despair, or loss of hope. However, excessive withholding of information can also isolate children, reduce trust, prevent meaningful preparation, and exclude them from decisions that affect their remaining life. The ethically appropriate question is therefore not whether truth or protection should always prevail, but how information can be tailored to the child’s developmental level, emotional readiness, and expressed preferences. Older children and adolescents may want direct but compassionate information, whereas younger children may communicate understanding through questions, play, silence, or indirect cues. Clinicians should avoid both abrupt disclosure and prolonged concealment. A phased approach, supported by parents and the interdisciplinary team, can preserve hope while enabling realistic preparation (1,4,7,9).

Parental surrogate decision-making and the child’s evolving autonomy

The second dilemma involves the relationship between parental surrogate authority and the child’s evolving autonomy. Parents are usually the legal decision-makers and often have the deepest knowledge of the child’s values, fears, and family context. At the same time, children and adolescents may have preferences about symptom burden, hospitalization, experimental therapy, place of care, or conversations they wish to have before death. Ethical conflict can occur in multiple directions. Some adolescents may prefer stopping burdensome treatment while parents seek continued disease-directed therapy; conversely, some adolescents may wish to continue treatment while parents or clinicians believe further intervention is disproportionate. Parents may also advocate for withdrawal or comfort-focused care while a child expresses fear that this means abandonment. These bidirectional conflicts should not be framed as parents simply overriding children. They require careful exploration of values, misunderstandings, grief, prognosis, and the child’s capacity for participation. Structured family meetings, pediatric palliative care consultation, and ethics consultation can help clarify goals and support shared decision-making without reducing the dilemma to a simple autonomy-versus-protection conflict (8,10-13).

Timing and manner of prognostic and goal-of-care communication

The third dilemma concerns the timing and manner of prognostic and goal-of-care communication. Clinicians may delay end-of-life conversations because they fear destroying hope, damaging trust, or worsening parental distress. Yet late communication can leave families unprepared for rapid decline, emergency decisions, or bereavement. Contemporary guidance supports earlier, iterative conversations that revisit prognosis and goals as the illness evolves rather than relying on a single final disclosure. Cultural background may shape preferences for directness, family mediation, religious meaning, and the child’s involvement, but broad comparisons between Western and East Asian cultures are insufficient. Clinicians should ask each family how they prefer information to be shared, who should be present, what the child already understands, and what level of detail is desired. In this sense, ethical communication should combine honesty, compassion, and flexibility. Figure 1 summarizes the main ethical tensions and communication questions discussed in this section (2,4,20,25).

Figure 1.

Conceptual framework of ethical dilemmas in end-of-life pediatric oncology communication. The figure is intended as a simplified conceptual map linking truth-telling, child participation, parental surrogate decision-making, timing of prognostic disclosure, and contextual modifiers. It should be interpreted as a narrative synthesis framework rather than as a quantitative evidence model.

Causes and influencing factors of ethical communication dilemmas

Psychological and emotional factors affecting clinicians, parents, and children

Psychological distress is a central driver of communication difficulties. Clinicians may avoid direct conversations because of sadness, fear of causing harm, uncertainty about prognosis, lack of training, or moral distress when continued treatment appears burdensome. Families may respond to impending loss with denial, anger, bargaining, guilt, or hope for an unexpected recovery. These responses are understandable and should not be pathologized, but they can make it difficult to discuss palliative care, treatment limitations, or the child’s preferences. Children may also protect parents by remaining silent, while parents may protect children by requesting nondisclosure. The result is often mutual avoidance. Communication support should therefore include emotional assessment, acknowledgment of distress, and repeated opportunities for questions rather than a single information transfer. Evidence from pediatric oncology communication studies suggests that family preparedness and trust improve when clinicians combine honest information with empathic responses and attention to the child’s preferred level of involvement (4,7,11,13,18).

Institutional, professional, and system-level constraints

Institutional factors also shape ethical dilemmas. Time pressure, fragmented care, unclear team roles, late palliative care referral, and absence of standardized family-meeting procedures can delay conversations until a crisis occurs. When oncology, intensive care, nursing, psychosocial, and palliative care teams provide inconsistent messages, families may perceive uncertainty as conflict or abandonment. Ethics consultation is often used only after disagreement escalates, although earlier involvement may clarify values, consent, and proportionality of treatment. In addition, clinicians in resource-limited settings may have fewer opportunities for formal communication training, psychological support, or interdisciplinary reflection. These factors can increase clinician moral distress and reduce the likelihood of goal-concordant care. Institutional responses should include protected time for serious-illness conversations, standardized documentation of goals of care, early palliative care triggers, and routine access to psychosocial and ethics support (17-24).

Cultural, religious, socioeconomic, and family-specific influences

Cultural and social factors influence how families interpret illness, suffering, truth-telling, and decision-making authority. However, culture should not be treated as a fixed East-West dichotomy. Families from the same country, religion, or language group may differ in whether they prefer direct disclosure, parent-mediated disclosure, gradual information sharing, or limited child involvement. Religious beliefs may support hope, meaning, and endurance, but they may also influence views about withdrawal of treatment, suffering, or miracle expectations. Socioeconomic status, health literacy, prior medical experiences, and trust in clinicians can further shape whether families interpret palliative care as supportive care or as abandonment. Clinicians should therefore use culturally humble, individualized assessment: ask what the family understands, what they fear, what the child has been told, who should participate in decisions, and what outcomes matter most. This approach respects family-centered care while still advocating for the child’s best interests and voice (2,29,31-33).

Existing intervention strategies and evidence evaluation

Communication skills training and simulation-based education

Communication skills training and simulation-based education may improve clinicians’ confidence and behaviors in difficult conversations, but the evidence should be interpreted cautiously. Available studies often use small samples, pre-post designs, self-reported outcomes, or training feasibility endpoints rather than long-term patient- or family-centered outcomes. Training programs are most useful when they teach clinicians to elicit understanding, respond to emotion, discuss prognosis in manageable steps, avoid false reassurance, and introduce palliative care as an added layer of support. Simulation with standardized patients or role-play can help clinicians practice both verbal and nonverbal responses, but improvements in intention or confidence should not be assumed to translate automatically into improved bereavement outcomes or better quality of death. Current evidence supports communication training as a promising component of pediatric oncology and palliative care curricula, while also indicating the need for stronger longitudinal evaluation (14,20,25,26).

Multidisciplinary collaboration, palliative care integration, and ethics support

Multidisciplinary collaboration is most ethically useful when it creates a consistent, shared communication plan rather than simply adding more professionals to the family’s care. Family meetings that include oncology, palliative care, nursing, psychology, social work, spiritual care, and ethics support can reduce fragmented messages and help clarify whether ongoing interventions remain consistent with the child’s goals and interests. Early pediatric palliative care involvement can support symptom management, advance care planning, and family preparation while disease-directed treatment continues. Ethics consultation should be considered before conflicts become entrenched, particularly when disagreement concerns treatment proportionality, disclosure to the child, parental requests for nondisclosure, or uncertainty about the child’s expressed preferences. These interventions appear promising, but their impact depends on institutional culture, referral timing, documentation practices, and clinician acceptance (12,19-24,26,34,35).

Psychological support, family interventions, and bereavement-oriented care

Psychological and family-centered interventions should begin before the final crisis rather than only after death. Advance care planning conversations can help families articulate values, acceptable burdens of treatment, preferred place of care, and the child’s desired level of involvement. For children, developmentally appropriate approaches such as play, drawing, narrative work, memory-making, and guided conversations may allow fears and preferences to emerge indirectly. For parents and siblings, anticipatory grief support, psychoeducation, and structured family communication interventions may reduce isolation and improve preparedness, although evidence remains heterogeneous. Because available studies vary in population, intervention components, and outcome measures, this review describes psychological and bereavement-oriented strategies as potentially beneficial rather than definitively beneficial. Further pediatric oncology-specific, longitudinal research is needed to determine which components improve family experience, bereavement adjustment, and goal-concordant care. Figure 2 summarizes the main intervention categories and their intended targets (14-16,27,28).

Figure 2.

Existing intervention strategies for ethical communication in end-of-life pediatric oncology. The figure summarizes communication training, multidisciplinary collaboration, ethics consultation, pediatric palliative care integration, psychological support, family-centered interventions, and future research directions. It is a conceptual synthesis and does not imply that all interventions have equivalent evidence strength. AI, artificial intelligence.

Critical appraisal of the evidence

Overall, the evidence supports the clinical relevance of structured and family-centered communication but does not permit strong causal claims. Qualitative studies provide rich descriptions of family experience and clinician moral distress, whereas intervention studies more often assess feasibility, satisfaction, confidence, or documentation rather than long-term child and family outcomes. Guidelines and consensus documents offer practical frameworks, but their implementation varies across institutions and cultures. For this reason, this review interprets intervention strategies as promising and ethically justified rather than definitively proven.

Limitations of existing intervention strategies and future directions

Implementation-level barriers and challenges

Implementation remains uneven. Communication training may not be sustained if clinicians return to departments where avoidance of difficult conversations is normalized or where time pressure prevents family meetings. Multidisciplinary ethics committees may be unavailable, underused, or perceived as advisory rather than practically influential. Palliative care integration may also be delayed by misconceptions that it signals treatment abandonment. Cultural adaptation is another limitation, but the key challenge is not simply transferring Western models into East Asian settings. Rather, interventions must be flexible enough to accommodate individual family preferences, religious beliefs, health literacy, local legal expectations, and different understandings of child participation. Institutions should therefore combine training with workflow redesign, referral triggers, documentation standards, and leadership support for serious-illness communication (23,24,29,36).

Methodological limitations of the available evidence

The available evidence base has important methodological limitations. Many studies are qualitative, single-center, cross-sectional, or focused on clinician and parent perspectives rather than direct child-reported outcomes. This limits certainty about causal effects and long-term impact. Randomized trials may be ethically and practically difficult because communication interventions are complex, individualized, and embedded in relationships, but more rigorous designs are still needed. Future studies should report intervention components clearly, include culturally diverse settings, assess outcomes over time, and distinguish clinician confidence from family-centered outcomes such as understanding, decisional regret, preparedness, symptom burden, and bereavement adjustment. Reviews in this area should also avoid overclaiming effectiveness when evidence has not been formally appraised or pooled (24,37,38).

Future directions: child participation, digital tools, and culturally responsive frameworks

Future intervention strategies should strengthen child participation, longitudinal shared decision-making, and culturally responsive advance care planning. AI-supported communication tools should be treated as a future research area rather than as an established clinical solution. Potential applications include conversation summarization, prompts for empathic responses, or decision-support aids, but these tools raise substantial concerns about privacy, informed consent, data security, algorithmic bias, accuracy, transparency, and protection of children’s health information. Any AI tool used in pediatric end-of-life communication would require prospective validation, human oversight, safeguards against replacing clinician empathy, and clear governance for storage and use of recorded conversations. Future research should also develop triadic communication models that include the family, the child, and the healthcare team while adjusting the child’s participation to developmental capacity and preference (12,29,30).

Conclusions

Communication in end-of-life pediatric oncology is ethically complex because it involves the child’s developing voice, parents’ surrogate authority, clinicians’ professional duties, uncertainty about prognosis, and intense emotional suffering. This review identifies three recurring communication dilemmas: how to balance truthful disclosure with protection and hope; how to support shared decision-making when parental preferences, clinical recommendations, and the child’s wishes differ; and how to time prognostic and goal-of-care conversations in a way that allows preparation without overwhelming the family.

Current interventions should be viewed as promising rather than definitively proven. Communication skills training, structured family meetings, early pediatric palliative care involvement, ethics consultation, and psychological support may improve the quality of communication when implemented consistently and adapted to family needs. However, the evidence base remains heterogeneous, and many studies rely on small samples, clinician-reported outcomes, or observational designs.

The review also shows that ethical communication should move beyond simple binaries such as autonomy versus protection or Western directness versus East Asian family-centeredness. A more clinically useful framework is relational and longitudinal: clinicians should assess the child’s developmental capacity, revisit goals of care over time, elicit family values, and support parents without excluding the child’s perspective when participation is possible and desired.

Future work should develop evidence-based, culturally responsive communication pathways; evaluate advance care planning and shared decision-making interventions longitudinally; include child-centered outcomes when ethically feasible; and define appropriate safeguards for digital or AI-supported communication tools. These priorities can help align care with the child’s interests, family values, and realistic clinical goals.

In conclusion, ethically sound communication in pediatric end-of-life oncology requires honesty, compassion, developmental sensitivity, interdisciplinary collaboration, and careful attention to family preferences. Strengthening the evidence base and improving implementation are essential steps toward more consistent, goal-concordant, and humane care for children with life-limiting cancer and their families.

Supplementary

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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.