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These Society of Critical Care Medicine 2026 guidelines provide evidence-based recommendations to improve end-of-life (EOL) care for critically ill infants and children in PICU (including cardiac ICU) and neonatal ICU. Using rigorous Grading of Recommendations, Assessment, Development, and Evaluation methodology, including a systematic review through November 2025, and a multidisciplinary expert panel, the guidelines focus on five Patient, Intervention, Comparator, and Outcome (PICO) questions (Table 1), emphasizing patient- and family-centered outcomes, implementation feasibility, and attention to health equity. Five conditional recommendations and one good practice statement were developed (Table 2). The strength of these recommendations was severely limited by the very low certainty of evidence related to several factors, including risk of bias, indirectness of the interventions, nonstandardized outcome measurements, and imprecision. The full guidelines, including all five recommendations and supportive evidence, may be accessed via the Society of Critical Care Medicine's Guidelines (1). These online resources also include a toolkit developed by a subset of the writing panel, designed to help ICU leaders effectively implement the recommendations in their local environments. A visual abstract of the guidelines is included in Figure 1 in (1). Key recommendations highlighted below are those with the greatest direct impact on patient and clinician experience. TABLE 1. - Patient, Intervention, Comparator, and Outcome Questions In these two populations: 1) Parents of infants and children (prenatal or older) who die during or following a stay in the PICU, cardiac ICU, or NICU 2) Neonatal and pediatric patients with life-threatening or life-limiting illness who receive care in an ICU before death PICO 1: For pediatric patients and parents of infants and children with life-threatening or life-limiting illness, do advance care planning conversations with clinicians improve EOL care? Intervention Comparator Outcomes Advance care planning discussion, with any clinical team member at any time No advance care planning or goals-of-care discussions Satisfaction with EOL symptom management for patients Satisfaction with goals-of-care communication, decision-making Parent/caregiver experience Intensity of care/healthcare utilization at EOL and alignment of care plan with patient/caregiver goals Quantity/quality of goals-of-care conversations Completion of patient-/family-desired bereavement/grief support interventions PICO 2: For pediatric patients and parents of infants and children with life-threatening or life-limiting illness, does palliative care team consultation/collaboration in PICU and NICU, compared with no palliative care consultation or usual care, improve EOL care? Intervention Comparator Outcomes Specialty palliative care consultation (any model of palliative care consultation) No specialty palliative care consultation Satisfaction with EOL symptom management Satisfaction with goals-of-care communication, decision-making Parent/caregiver experience Healthcare provider/staff coping/resilience, moral distress and burnout, satisfaction, and confidence in providing EOL care Intensity of care/healthcare utilization at EOL Quantity/quality of goals-of-care conversations PICO 3: For children and infants admitted to PICU or NICU with life-threating or life-limiting illness, does the use of a systematic, patient-centered symptom assessment/management plan, compared with usual care, improve patient symptoms, family satisfaction with care, and family mental health symptoms? Intervention Comparator Outcomes Systematic (not necessarily protocolized but based on best practice/evidence-based) patient-centered approaches to symptom assessment or management and withdrawal of life-sustaining therapy Usual care Satisfaction with EOL symptom management Parent/caregiver experience Healthcare provider/staff coping/resilience, moral distress and burnout, satisfaction, and confidence in providing EOL care Satisfaction with overall ICU and EOL care PICO 4: For staff working in PICU and NICU, do education programs in palliative care skills (including symptom management, communication, psychosocial and spiritual care), compared with no such education, improve patient and family satisfaction with care, symptom management, rates of conflict, staff mental health symptoms, staff burnout symptoms, and self-efficacy for EOL care? Intervention Comparator Outcomes Education programs (any kind—including seminars, simulation) in palliative care skills (including symptom management, communication, psychosocial, and spiritual care) No education program in palliative care skills Satisfaction with EOL symptom management Satisfaction with goals-of-care communication, decision-making Parent/caregiver experience Healthcare provider/staff coping/resilience, moral distress and burnout, satisfaction, and confidence in providing EOL care Patient/family healthcare team conflict Satisfaction with overall ICU and EOL care PICO 5: For children and infants admitted to a PICU or NICU with life-threatening or life-limiting illness, does the use of bereavement/grief support programs/interventions during or after ICU stay (including memory/legacy making interventions) improve family satisfaction with care and family mental health outcomes? Intervention Comparator Outcomes Bereavement/grief support programs/interventions during or after ICU stay (including memory/legacy making interventions, bereavement/grief support follow-up) Usual care Satisfaction with overall ICU and EOL care Parent/caregiver symptoms Parent/caregiver preparedness at child’s EOL Involvement of psychosocial support EOL = end-of-life, NICU = neonatal ICU, PICO = Patient, Intervention, Comparator, and Outcome. TABLE 2. - Recommendations and Good Practice Statement Recommendation No. Recommendation Strength of Recommendation 1 We suggest implementing an advance care planning process for pediatric patients and parents of infants and children with life-threatening or life-limiting illness Conditional recommendation for, very low certainty evidence 2 We suggest pediatric palliative care consultation for children and infants with life-limiting or life-threatening illness Conditional recommendation for, very low certainty evidence 3 We suggest using a systematic approach to symptom assessment and management to meet patient and family goals for EOL care vs. an ad hoc approach to symptom management Conditional recommendation for, very low certainty evidence 4 We suggest palliative care education for staff caring for children and infants with life-limiting or life-threatening illness Conditional recommendation for, very low certainty evidence 5 We suggest implementing a bereavement care process for children/infants and their families/caregivers during or after death Conditional recommendation for, very low certainty evidence Pediatric and neonatal clinicians should actively address disparities in pediatric EOL care by eliminating barriers to high-quality palliative care for all patients and families with particular attention to communities and/or populations that have been marginalized based on race, ethnicity, preferred language, country of origin, gender identity, sexual orientation, religious, and spiritual identity, etc. through: 1) recognition and mitigation of personal biases with an attitude of cultural humility, 2) identifying and addressing structural racism and institutionalized discrimination, and 3) engagement of patient, family, and community perspectives and experiences in the care process Good practice statement EOL = end-of-life. SYSTEMATIC SYMPTOM ASSESSMENT AND MANAGEMENT We suggest using a systematic approach to symptom assessment and management to meet patient and family goals for EOL care vs. an ad hoc approach to symptom management (conditional recommendation for, very low certainty evidence). Among all the recommendations in these guidelines, implementing a systematic approach to symptom assessment and management, is likely the most feasible to implement as a core practice across a wide range of resource settings. Standardized protocols can improve the consistency and comprehensiveness of symptom evaluation and management, enabling clinicians to proactively identify and address the physical and psychosocial needs of patients and families. This approach may also promote health equity by reducing the risk of missed or undertreated symptoms, especially for infants and nonverbal or neurologically impaired children who cannot easily express discomfort, or patients and families whose language of care is not English. Given variability in EOL care preferences, such protocols should be tailored to align with the unique values and goals of each patient and family. PEDIATRIC PALLIATIVE CARE CONSULTATION We suggest pediatric palliative care (PPC) consultation for children and infants with life-limiting or life-threatening illness (conditional recommendation for, very low certainty evidence). PPC specialists leverage expertise and focused attention to elicit patient/family goals and palliative needs, supporting goal-aligned care and optimizing patient and family experience related to symptom management and emotional support. Although the evidence comparing PPC consultation to no consultation is of low certainty, a substantial body of qualitative research underscores its perceived value in supporting continuity of care before, during, and after ICU hospitalization, enhancing communication, and providing emotional support to seriously ill children and their families throughout the illness trajectory, including early in the course and even before a diagnosis is confirmed. Many patients and families would benefit from PPC, yet for some patients and families it may be more appropriate or feasible for that care to be provided by their ICU team. PPC specialists are disproportionately located in urban academic centers in the United States and Western Europe, and access remains limited in rural regions and in low- and middle-income countries (2). This geographic variability reinforces the need for ICU-based primary palliative care skills. Even in well-resourced settings, some children die after very brief ICU stays, and some families do not want to have a new subspecialty team introduced as their child nears the EOL. At the same time, ICU providers may miss opportunities to include PPC and inadvertently contribute to known disparities in PPC for marginalized and minoritized patients and families. Considering the significant variability of PPC resources in different ICU settings, the variable timing of each child’s death, and the specific palliative needs of individual dying patients and their families, ICU and PPC teams should collaborate to optimize consultation practices in balance with the development of primary PPC skills for ICU clinicians. PALLIATIVE CARE EDUCATION FOR ICU STAFF We suggest palliative care education for staff caring for children and infants with life-limiting or life-threatening illness (conditional recommendation for, very low certainty evidence). Given the shortage of PPC specialists relative to the number of infants and children who die in ICUs, equipping ICU clinicians with foundational palliative care skills is essential in providing EOL care. Education in this area can enhance clinician confidence and competence in delivering EOL care, including communication, pain and symptom management, ethical decision-making, and family support. There is currently no single education model established as best practice across multiple ICU settings; however, publicly available online resources recommended by the guidelines panel are included in the implementation toolkit. While implementation feasibility may vary depending on institutional resources and training models, PPC education is generally well-received and may also help reduce moral distress and compassion fatigue among ICU providers. ADDITIONAL CONSIDERATIONS These guidelines underscore the importance of a core practice of initiating early advance care planning (ACP) conversations to ensure that medical care aligns with patient and family values and preferences throughout the course of serious illness. Pediatric ACP is defined as a process that supports parents, surrogate decision-makers and, when developmentally appropriate, pediatric patients with serious illness in sharing their goals, values, and treatment preferences to ensure that future medical care is goal-concordant. Although the evidence is limited, existing studies suggest that ACP may raise parental satisfaction with EOL symptom management, communication and decision-making, improve the patient-caregiver experience, and increase documentation of goals of care. Because ACP centers on exploring patients’ and families’ lived experiences of illness, it also holds promise for advancing healthcare equity by helping clinicians identify and address barriers to goal-concordant care, including those related to racism and other forms of discrimination. Of note, increasing opportunities for ACP does not in itself ensure more equitable ACP; to be effective, ACP must be delivered in a manner sensitive to the patient and family needs (i.e., language, cultural, spiritual), recognizing that EOL preferences vary widely across individuals and communities. In recognition of the multiple barriers that patients and families from disadvantaged, minoritized or marginalized populations face, these guidelines also include a good practice statement, emphasizing the importance of intentionally assessing for and addressing barriers to high-quality EOL care by: 1) recognizing and mitigating personal biases with an attitude of cultural humility, 2) identifying and addressing structural racism and institutionalized discrimination, and 3) engaging patient, family, and community perspectives and experiences in the care process. See Table 3 for recommended research priorities to address disparities. TABLE 3. - Research Priorities Topic Research Priorities Advance care planning conversations Develop and validate clinically meaningful patient and parent/caregiver outcome measures, in particular goal-concordant care, for studies of ACP and EOL in pediatric and neonatal critical care settings Determine the impact of ACP on staff outcomes (e.g., moral distress, burnout, job satisfaction and attrition) Determine the effectiveness of different ACP approaches related to the timing/setting, type of intervention (e.g., conversation guide, documentation activity, patient/parent/staff education), follow-up, and evaluation Evaluate patient and parent/caregiver preferences around the provision of ACP Evaluate interventions to overcome barriers and the effects of these interventions on patient, family, and clinician outcomes Characterize drivers of inequitable access and delivery of ACP with potential solutions Examine optimal timing and developmental adaptation of ACP conversations across pediatric age groups Evaluate effectiveness of culturally and linguistically tailored ACP materials and processes Pediatric palliative care team consultation and collaboration Evaluate processes for timely and appropriate consultation and integration of PPC for children with life-threatening or life-limiting illness Identify models of specialty and primary palliative care that may fit the needs of institutions with a variety of resource capabilities Characterize drivers of inequitable access and delivery of PPC consultation with potential solutions Conduct more causal studies (whether using historical data/controls or RCTs) to assess impact of palliative care Assess implementation outcomes (feasibility, fidelity, sustainability) of PPC consultation models across diverse ICU settings Explore family perspectives on PPC team involvement across illness trajectories and points of care Systematic patient-centered symptom assessment/management planning Standardize approaches to symptom management and other supportive care for patients and families at EOL in pediatric and neonatal critical care Define optimal assessment and treatment strategies for symptoms at EOL to address evidence of variations in care in medications and doses used Develop processes to elicit patient/family goals for EOL care symptom management and strategies to meet those goals Develop standardized assessment tools for symptoms and other care needs, evidence around frequency of assessments, and medication choices for different symptoms Define optimal processes for withdrawal or withholding of life-sustaining therapies (e.g., terminal weaning vs. direct extubation, location of withdrawal, patients with chronic ventilatory support, chronic circulatory support, and extracorporeal membrane oxygenation) Identify strategies for management of symptoms refractory to conventional treatments (e.g., palliative sedation) Expand studies of noninfant populations Identify best practices for managing symptoms such as dyspnea, agitation, and pain at EOL Develop symptom assessment tools tailored for nonverbal or neurologically impaired pediatric patients HCP palliative care education Evaluate impact of HCP education on patient-and family-important outcomes (e.g., satisfaction with communication, satisfaction with symptom management, parental mental health and grief) Evaluate impact of education on outcomes for HCP (e.g., wellbeing, burnout, workforce retention) Conduct longitudinal follow-up of outcomes (e.g. sustained self-efficacy, longer term patient-and family-impacts) Examine cost-efficacy of various educational interventions Standardize educational interventions and assessments using standardized frameworks for reporting impact Explore the use of simulation and digital platforms to deliver scalable palliative care education Bereavement support programs and interventions Conduct more causal studies (whether using historical data/controls or RCTs) to assess impact of bereavement care on bereaved family outcomes Evaluate optimal processes, including timing of bereavement care, involvement of siblings, cultural tailoring Examine cost and cost-effectiveness considering impact on parent/sibling outcomes (mental health, social outcomes, employment/education, etc.) Evaluate how the timing and personalization of bereavement outreach impacts family outcomes Assess the impact of legacy-building and spiritual care practices on bereaved families Addressing disparities in EOL care for PICU/cardiac ICU/neonatal ICU patients and families Conduct qualitative and mixed-methods research that highlights the experience of marginalized populations during pediatric and neonatal EOL care in the ICU Evaluate and describe the impact of systemic disadvantage and structural inequities on key outcomes in EOL care (e.g., urban vs. rural, high-income vs. low-income countries) Identify drivers of disparities in EOL ICU care (e.g., disparities in access to and delivery of services like ACP, child life, bereavement care) Test interventions to address disparities Address underrepresentation of historically marginalized populations in PPC intervention research Promote community-engaged research to co-develop culturally responsive EOL interventions Evaluate strategies to increase palliative care exposure and improve palliative care mentorship for underrepresented minority students Evaluate strategies to improve diversity among PPC scientists ACP = advance care planning, EOL = end-of-life, HCP = healthcare provider, PPC = pediatric palliative care, RCT = randomized controlled trial. In conclusion, the 2026 guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of Life underscore the critical need to strengthen the evidence base for EOL care in pediatric, neonatal, and cardiac intensive care settings. Key research priorities identified by the panel include the development and validation of better tools to assess symptom burden and patient/family experiences, the use of longitudinal and implementation-focused study designs to generate causal and pragmatic evidence, and the evaluation of cost-effectiveness, equity, and adaptation of interventions across diverse healthcare settings.