Pediatric Palliative Care Research Articles

Outpatient Pediatric Palliative Care: A National Survey of Clinic Structures and Operations.

The Development Status and Five-Year Evolution of Pediatric Palliative Care in Mainland China.

Impact of Palliative Care on Psychosocial and Spiritual Outcomes in the Neonatal Intensive Care Unit.

Phase 1 trials may expose pediatric oncology patients to potential adverse effects beyond drug-related toxicity, including delays in advance care planning and suboptimal quality of end-of-life (EoL) care. Pediatric palliative care (PPC) can provide symptom management support and assist with EoL planning and care for patients and families enrolling in Phase 1 trials; however, little is known about children with cancer who enroll in Phase 1 studies. A retrospective medical record review of pediatric oncology patients enrolled on a Phase 1 clinical trial over a 9-year period was completed at an academic cancer hospital. Data collected included sociodemographic, clinical, and EoL-related variables. Descriptive analyses were performed. A total 539 patient charts met the inclusion criteria for review; 53% (n = 285) were male, 76% (n = 411) were Caucasian, and 82% (n = 442) were deceased. Central nervous system (CNS) tumors were the most common diagnosis (44%, n = 237), followed by leukemias (33%, n = 179), solid tumors (20%, n = 108), and lymphomas (3%, n = 15). All patients enrolled in at least one Phase 1 study, with 15% (n = 83) enrolling in two or more. The median length of time on study was 62days, with time on study decreasing for subsequent Phase 1 trial participation. Two-thirds of patients (68%, n = 368) had PPC consultation; however, only 21% (n = 76) had PPC consulted prior to Phase 1 trial enrollment. Although most patients enrolled in Phase 1 studies have PPC involvement, referrals are typically made far beyond trial enrollment. Earlier and systematic PPC integration in this high-risk patient population may offer the potential benefit of maximal EoL support, care, and planning.

Standardized Assessment of Patient Experience in Pediatric Palliative Care: A National Collaboration.

Growing through experience: A phenomenological study of pediatric healthcare providers' experience of caring for terminally ill children in mainland China.

Subspeciality pediatric palliative care (SPPC) team consultation is an integral component of comprehensive care provided to critically ill children. Little is known about the utilization of SPPC following out-of-hospital cardiac arrest (OHCA) in the United States. Our objectives were to examine SPPC utilization following OHCA and compare characteristics between children who did and did not receive SPPC consultation. Retrospective cohort study. Forty-seven U.S. children's hospitals participating in the Pediatric Health Information Systems database. Children younger than 21 years old with PICU admissions from 2013 to 2023 following OHCA. None. The primary outcome was receipt of SPPC consultation, as identified by International Classification of Diseases codes. Patient characteristics and outcomes were compared between those with and without SPPC consultation. Multiple logistic regression models were fitted to identify factors associated with greater odds of receiving SPPC. Of 1530 pediatric patients hospitalized after OHCA, 198 (13%) received SPPC consultation. SPPC consultation, vs. not, was more common among patients with complex chronic conditions (CCCs; 97% vs. 85%; p < 0.001) and was associated with longer hospital stay (median 4 vs. 2 d; p < 0.001), new medical technology (feeding tube 8.1% vs. 3.8%; p = 0.006 and tracheostomy 8.6% vs. 3.2%; p < 0.001), and in-hospital mortality (82% vs. 66%; p < 0.001). Multivariable analysis suggested the odds (using odds ratio [OR]; 95% CI) of SPPC consultation increased by 21% for each additional CCC (OR, 1.21 [95% CI, 1.11-1.32]) and by 12% annually between 2013 and 2023 (OR, 1.12 [95% CI, 1.06-1.18]). Despite the high morbidity and mortality associated with pediatric OHCA, SPPC consultations were used infrequently and disproportionately concentrated among children with preexisting medical complexity or imminent death. Since all PICU children post-OHCA may benefit from SPPC consultation, future studies should focus on barriers and opportunities for SPPC integration into standard care.

Caregivers of a child with a serious medical condition are often confronted with difficult and stressful medical information. While they commonly seek out health-related information to better care for their child and help with their decision-making, sometimes caregivers engage in healthcare information avoidance. Healthcare information avoidance is the decision to prevent or delay the acquisition of available, but potentially unwanted, health-related information. We begin by defining the construct of healthcare information avoidance and exploring key theoretical frameworks that illuminate its underlying mechanisms including emotion regulation theory, attentional and cognitive models, approach-avoidance coping strategies, and dispositional theories. A lack of validated measures to assess caregiver healthcare information avoidance was noted as contributing to the dearth of empirical work in this area. Common areas of caregiver healthcare information avoidance were identified at various points throughout the pediatric palliative care illness trajectory. The review concludes with directions for future research and practical recommendations for clinical care, highlighting the importance of identifying the occurrence and reasons for caregiver information avoidance as well as optimizing approaches to information provision.

Background: Although the pediatric intensive care unit (PICU) is associated with life-prolonging therapies, greater than 80% of families elect to forego this treatment within 24 hours of a child's death. The value-based factors that influence this decision remain unclear. Objective: To contextualize elements of decision-making when a child's family declines cardiopulmonary resuscitation (CPR), using holistic values and ethical principles and standards as a framework. Design: A complementary qualitative analysis of mixed-methods data collected retrospectively from the electronic medical record. Setting/Participants: The PICU of a Midwestern U.S. quaternary pediatric hospital. Participants were family decision-makers and medical providers of 19 purposefully selected children and adolescents who died after 24 hours in the PICU from 2013 to 2022. Measurements: We utilized thematic analysis to inductively identify themes contextualizing elements of end-of-life decision-making during the child's terminal PICU admission. Narrative documentation in PICU and pediatric palliative care (PPC) medical progress notes was analyzed by three coders. Emergent themes were defined, consolidated, and discussed until achieving consensus. Results: We present Factors Affecting Decision-Making: Sources of family support, Personal values and conflict, Spiritual beliefs and values, Ethical values and standards, and Rhetoric/Language. The final theme includes idioms, accepted and unaccepted terminology, and the use of interpreters. Conclusions: Psychosocial, ethical, and spiritual factors may impact a child's or family's decision to forego high-intensity care like CPR at the child's end of life. Providers should invite consideration of value-based factors when guiding family decision-making, which may be further facilitated by consulting PPC, patient advocacy, and/or ethics.

The highest percentage of our patients referred to Pediatric Palliative Care (PPC) are those with brain tumors. Of these, we analyzed PPC activation modes and timing, occurrence of acute events during the period of PPC activation, and the time between acute event and death.MethodsDuring the period 1 January 2010 to 31 October 2023 approximately 1000 Cranial Nervous System (CNS) tumor patients were treated at Fondazione IRCCS Istituto Nazionale dei Tumori in Milan. All records of patients with CNS tumors who were treated and who died during this period were retrieved and retrospectively analyzed. Data on 107 patients were retrieved. At the time of being taken over by PPC service, 32 patients were at diagnosis stage and 75 were beyond first-line of treatment. At diagnosis, 31 patients had already undergone surgery for placement of a ventriculoperitoneal shunt due to acute intracranial hypertension (IH). Twenty-nine out of 107 patients suffered an emergency while already managed by PPC service. In 18 out of 29 cases, emergency was an acute IH episode. Median time from diagnosis to PPC activation and from diagnosis to death (Overall Survival) were 12.1 months (6.2-27.3) and 16.7 months (10.8-31.1), respectively. Sixty-two patients died at home, 32 were admitted to and died in the referring hospice, 13 died in different hospitals. Management of a "complex" pediatric patient with an unfavorable prognosis requires early activation of PPC, with a seamless continuation of the already existing partnerships between family, pediatric-oncology team, referring neurosurgeon and palliative care teams.

If recent medical advances have positively impacted children's lives, access to this new knowledge and technology raises ethical questions. Medical progress has also contributed to prolonging suffering in those afflicted with life-limiting conditions. Despite the growing tension between the need to discuss end-of-life issues, particularly advanced directives, and the widespread discomfort in engaging in such discussions, the question of death remains frequently evaded. The transition from curative to palliative goals is fraught with misunderstandings and moral distress. This transition of care is complex, and there is limited knowledge about the best approach to proceed. However, when not done effectively, the process carries risks of trauma for patients, families, and healthcare providers. In this article, common pitfalls during the care transition from curative to palliative goals are identified and deconstructed in light of the most recent evidence-based references in the field, along with the input of pediatric palliative care experts, to guide healthcare providers in addressing these challenges. Effective communication models exist and should be taught and utilized. Understanding how children perceive illness and death can guide the delicate task of including them in care planning. Shifting the goals of care from curative to palliative is not giving up on hope. It is about establishing a shared-decision approach to goal-concordant care that considers the non-curative nature of the illness and ensures that children receive compassionate and personalized care. Lastly, healthcare providers must engage in self-monitoring to remain present while delivering care in such a unique and emotionally challenging context.

BackgroundPediatric palliative care (PPC) in neonatal intensive care units (NICU) presents ethical and emotional challenges for healthcare professionals. This study explores perceptions, experiences, and needs of NICU staff concerning PPC in the context of implementing collaboration with a pediatric palliative care reference center (PPCRC).MethodsA qualitative descriptive study using a semi-structured questionnaire was conducted among NICU professionals. Among 91 staff, 26 complete responses were thematically analyzed. Results were compared with international literature.ResultsRespondents highlighted emotional distress, communication challenges, need for ethical guidance, training gaps, and a desire for stronger integration of PPC teams. The collaboration with PPCRC was perceived as helpful by many, although underutilized by some.ConclusionNICU professionals face significant moral and emotional burdens in PPC. Strengthening training, enhancing team cohesion, and promoting earlier PPC integration may improve both care quality and staff well-being.

Background/objectives: Transferring pediatric palliative care patients nearing the end of life (EOL) between care locations is clinically and logistically complex, potentially causing significant stress for families and patients. This study aimed to determine how frequently such transfers occurred in the last two weeks of life, noting the documented reasons for these changes. Methods: A retrospective medical record review was conducted for pediatric palliative care patients known to two palliative care services in Sydney, Australia, who died between January 2017 and May 2024. All medical records from the last two weeks of life were reviewed for any transfers that occurred, noting the reasons for these transfers. Results: Of 457 patients with available medical records, 44.1% of patients had at least one change in location of care in the last 2 weeks of life: 34.1% had one, 7.0% had two, and 3.1% had three or more changes in location. The most common reason for the final change in location was to receive a higher level of medical care (54.3%), often triggered by a sudden medical event. However, 37.8% of changes involved moving a patient to a less medicalized setting. A smaller proportion of transfers (8.0%) were due to psychosocial reasons. Conclusions: To our knowledge, this is the first study to quantify pediatric EOL transfers in the last 2 weeks of life, identifying reasons for these transfers. The findings offer valuable insights to improve planning, reduce unnecessary and potentially stressful transfers, and guide the management of necessary transfers.

Children with complex and life-limiting (CLLC) conditions require holistic care that supports not only symptom management but also their emotional, developmental, and relational well-being. Despite growing evidence on multidisciplinary approaches in pediatric palliative care (PPC), there is little focus in literature on specific role of educational therapy (EdTx). This paper explores how EdTx can contribute to dignity-centred palliative care through the case of a seven-year-old girl diagnosed with Mosaic Trisomy 13. Drawing on theories of emotional development and relational care, the case illustrates how educational therapy can enhance communication, agency, and legacy-building across home, school, and clinical settings. Educational therapists (ETs) are essential partners in co-creating meaning and preserving the identity of children with progressive decline in cognitive and physical functions. This case also offer practice-based insights into how educational therapy bridges psychosocial, developmental, and pedagogical dimensions of pediatric palliative care. The insights advocate for an integrative, relational approach that centres the child’s presence, voice, and dignity throughout the palliative care journey.

BACKGROUND AND OBJECTIVES In neonates for whom prognostication is complex or uncertain, it is critical to carefully consider how best to apply principles of palliative care. As subspecialty pediatric palliative care has become more readily available within children’s hospitals, neonatologists and palliative care teams collaborate with increasing frequency. Exactly how the two specialties share this work, however, is unknown. We thus set out to assess the perceptions of neonatologists and palliative care physicians on various aspects of palliative care consultation for neonatal patients. METHODS Neonatologists and palliative care clinicians at 35 academic children’s hospitals were invited to complete an anonymous online survey. Survey questions explored current practice patterns related to palliative care consultation, perceptions of consultation for specific neonatal diagnoses, and specific palliative care skills utilized by both neonatologists and palliative care providers. RESULTS There were 66 responses (total response rate = 66%) returned. Survey participants reported wide variation in palliative care team composition and function. Across neonatal diagnoses, respondents indicated that consultation ought to occur with increased frequency. Respondents identified specific skills as primary to neonatology, palliative care, or shared between the two. Qualitative analysis of open-ended questions identified multiple themes that may impact the culture of collaboration between neonatology and palliative care. CONCLUSIONS Palliative care consultation for critically ill neonates continues to evolve. There is marked variation in consultation practices reported among large children’s hospitals. Neonatal and palliative care teams should work together to identify opportunities for improving collaboration, whether based upon specific diagnoses or through focused educational efforts.

This study explores the integration of home-like design elements in paediatric/adolescent palliative care inpatient units, drawing on perspectives from both medical and architectural professionals. Recognising the unique developmental and psychosocial needs of young patients, this research explores how the spatial and emotional qualities associated with 'home' are interpreted and operationalised in palliative care environments. A multimethod approach was employed, including a targeted literature review, analysis of seven international paediatric hospice design and semistructured interviews with 22 experts from the medical and architectural fields.The findings identify two central themes in the design of supportive palliative care settings: (1) Supporting Moments of Normalcy, which highlights the importance of daily routines, social connections and familiar activities in fostering emotional well-being, and (2) Architectural Features of Home, which addresses spatial layout, materiality and aesthetic elements that evoke comfort and familiarity of home.A key divergence was observed between the disciplines: medical professionals emphasised the emotional and social aspects of care, while architects prioritised spatial configuration and material considerations. Additionally, the study discusses how design approaches may vary between younger children and adolescents in creating home-like environments. The contrast points to the need for more integrated design strategies that balance clinical functionality with emotional and social well-being. Limitations include the lack of direct input from young patients and families, as well as a limited exploration of cultural interpretations of 'home'. Future research should address these gaps to inform more inclusive and holistic design approaches in paediatric palliative care.

IntroductionHealthcare professionals caring for children with life-threatening illnesses face frequent bioethical conflicts, often leading to moral distress. In pediatric palliative care (PPC), this can compromise both professional well-being and quality of care.ObjectiveTo analyze moral distress among professionals in PPC and identify associated factors.MethodCross-sectional study using the Measure of Moral Distress for Healthcare Professionals - Brazilian Version (MMD-HP BR) scale, applied online to PPC professionals.ResultsA total of 112 professionals participated, mean age 41years (±9.1), predominantly female (90.2%) and from the Southeast region (49%). Average professional experience was 15years (±9.2), with 6years (±4.3) in PPC. Most participants were physicians (55.4%) and nurses (13.4%). The mean MMD-HP BR score was 104.2 (±74.8), significantly correlated with profession (P = 0.045). Nursing technicians had lower distress compared to nurses (P = 0.014), physiotherapists (P = 0.02), physicians (P = 0.002) and psychologists (P = 0.014). Higher scores were found among professionals who had considered leaving, had left, or were considering leaving their jobs. The most impactful items were: "I observe health professionals communicating 'false hopes' to the patient or family" and "I observe poor quality care due to lack of communication between team members".ConclusionMoral distress in PPC is strongly linked to communication difficulties, a critical factor in professionals' experiences. The scarcity of studies in pediatrics, especially in Brazil, highlights the need for further research to develop strategies that support team well-being and improve the quality of care provided to children and families.

BackgroundThe pediatric palliative care (PPC) team’s mission is to assist and promote the highest quality of life for children with life-threatening and life-limiting illnesses and their families. The whole care of these patients implies sometimes challenging clinical and emotional situations. PPC providers may be exposed to psychological distress.AimsThe study’s objectives were to evaluate the psychological well-being of healthcare providers working in the Regional Center for Palliative Care and Pediatric Pain Therapy, including their stress levels, levels of depression, anxiety, and risk of burnout, and to determine whether practicing mindfulness through virtual reality can improve these items.MethodsThe mindfulness intervention was delivered twice a week for four weeks in this prospective, non-randomized clinical study. Each participant received a 10-minute mindfulness-related session in 3-D virtual reality, for a total of eight exposures. Measures of emotional depression, anxiety, stress, and risk of burnout were assessed using the DASS-21 and Mini-Z questionnaires. Participants’ respiratory and heart rate were also monitored throughout each session. The treatment was evaluated using the DASS-21 at each timepoint, the Mini-Z at T0 and T3, and vital parameters at T1, T2, and T3 (T0 before the treatment, T1 at the end of the first week, T2 at the end of the second week, and T3 after completion of the last week’s treatment).ResultsPediatricians, nurses, allied healthcare professionals, and pediatric residents made up the 27 PPC healthcare practitioners enrolled. The median age was 47 years (IQR 36–50), and 85% of the participants were female. At the time of recruitment (T0), around 25% of individuals (n = 7; 25.93%) acknowledged a risk of burnout. Between T0 and T3, there was a significant shift in the DASS-21 scores for depression, anxiety, and stress (p <.05), indicating an improvement in the overall scores. The study of vital signs revealed that over the weeks, the heart and breathing rates had significantly decreased. It has also been demonstrated that the candidate’s mood significantly improved at T3 compared to the study’s beginning.Relevance to clinical practiceAccording to the current research, using virtual reality in a PPC team is a potential technology that may be helpful in lowering stress levels and the risk of burnout, resulting in significant improvements in the well-being of the healthcare personnel.

In the Field: Visiting Peer Institutions to Inform Pediatric Palliative Care Program Redevelopment.

Children with medical complexity are a growing population with multiple conditions, medical device dependency and frequent need for emergency department (ED) visits; their care and management in an emergency setting may be challenging. The pediatric palliative care (PPC) network aims to address the needs of these children and their families to improve their quality of life.The purpose of this retrospective single-center study was to determine the prevalence and reasons for visiting the ED, the management, outcome, and quality of care received in a Tertiary Care Pediatric Hospital, where the PPC facility is strongly integrated and cooperating with the ED. We collected data on the 775 pediatric ED visits performed in Padua Pediatric ED between 2006 and 2023 by 85 children under the care of the regional center for PPC in Veneto, Italy. Median number of visits per patient was 2.0 per year, 33.4% resulting in hospital admissions. Most frequent reasons for ED visits were respiratory conditions (28.9%), followed by medical device malfunctions (18.3%). Other data included PPC specialist involvement, ED referral, time of arrival, color code, and type of assistance required. Over the years, there has been an increased number of ED visits, admissions, medical device malfunctions, hours spent in the ED, and involvement of PPC specialists. No significant influences were noted during the COVID-19 pandemic period. These data highlight potential areas of intervention to enhance emergency care management for CMC, such as early PPC specialist involvement with the home care network activation, a specific training of ED providers, and a dedicated service for the management of device malfunctions.