Journal of Palliative Medicine

Being the caregiver of a pediatric patient with a complex or serious illness can be emotionally intense and stressful. Caregiver burden significantly affects the biopsychosocial well-being of both the child and the caregiver. Interventions such as Narrative Medicine (NM) may help alleviate this burden by enhancing emotional resilience and strengthening support networks.

This review aimed to explore which NM interventions can reduce the emotional burden of caregivers of pediatric patients under the age of 18.

A systematic literature review was conducted to examine the benefits of NM interventions on caregiver well-being. Primary studies were included if they described NM interventions involving active written narration by caregivers (e.g., diaries, digital writing). Studies relying solely on oral storytelling or third-party facilitation (e.g., interviews, dignity therapy) were excluded. Only studies in English or Italian were considered; studies focusing on adult patients or targeting the patient rather than the caregiver were excluded. The review followed PRISMA guidelines. A comprehensive search was conducted in MEDLINE, Embase, CINAHL, Cochrane Library, and APA PsycInfo in July 2024 with no time limits. Study quality was assessed using JBI and NIH tools, and data were synthesized narratively and in tables.

The search identified 1078 unique references. After screening, four studies met the inclusion criteria. Interventions ranged from narrative diaries in pediatric intensive care units to online journaling. All studies showed feasibility and acceptability, with reported benefits including emotional expression, perceived support, improved coping, and greater self-reflection. Most participants were women (85%), although the review included all caregivers regardless of gender.

In conclusion, NM appears to be a promising tool to support caregivers of pediatric patients with complex or serious conditions. While preliminary findings are encouraging, further research is needed to assess long-term outcomes. Structured workshops and the involvement of NM facilitators may further support caregiver well-being and reduce psychological burden.

Music therapy (MT) and virtual reality (VR) are increasingly being used in palliative care for symptom management, though evidence quality remains low.

The aim of our study was to assess the effect of combined MT + VR on the main symptom in palliative cancer patients.

This study employed an explanatory sequential mixed methods design based on a randomized controlled clinical trial, integrating quantitative outcomes with qualitative patient experiences.

The main symptom was the symptom rated as most severe by the patient on the Edmonton Symptom Assessment System Revised (ESAS-r) scale. Secondary outcomes included the global ESAS-r score, anxiety (additionally measured with State-Trait Anxiety Inventory—State [STAI-S]), emotional distress (DME scale), and heart rate. All variables were assessed at three time points: baseline (T1), post-intervention (T2), and 24 hours post-intervention (T3).

Adult patients attended by palliative care with advanced cancer at a university hospital in Argentina.

Sixty patients completed the protocol. Significant differences between baseline (T1) and immediate post-intervention (T2) were observed when comparing the MT + VR condition to the control group for the main symptom (1.5 vs. 0, p < 0.001); global symptom score (9 vs. 0.5, p < 0.001); and anxiety (0.2 vs. 0.1, p < 0.001). No significant differences were found between groups at 24 hours post-intervention (T3) compared with baseline. Several categories of interest emerged: (a) affective states, (b) projections, and (c) transcendental experiences.

The combination of MT + VR improved the main symptom, as compared with the control group. Patient perceptions add valuable information about the factors that influenced this difference.

Dyspnea is a common and distressing symptom in patients with cancer, particularly in advanced stages and lung cancer. It is associated with poor quality of life and is often challenging to manage. The Respiratory Distress Observation Scale (RDOS) is a validated tool for assessing dyspnea in noncommunicative patients.

To assess the validity of the RDOS by comparing it with patient-reported dyspnea using the revised Edmonton Symptom Assessment System (ESAS-r) in patients with cancer receiving palliative care (PC), and to explore associations with functional status.

Observational, cross-sectional study.

The study was conducted at the National Cancer Institute (INCan) in Mexico City from October 2022 to February 2023. A total of 194 adult cancer patients with dyspnea receiving PC were included.

RDOS, ESAS-r, and Karnofsky Performance Status (KPS) scores were assessed. Analyses included Spearman’s correlation and comparisons across KPS groups.

Median RDOS score was 5 (interquartile range 3–9), with 36.1% experiencing severe dyspnea. Higher RDOS scores were observed in patients with KPS ≤40. RDOS scores correlated significantly with ESAS-r dyspnea, insomnia, and drowsiness. Agreement between RDOS and ESAS-r was higher in moderate/severe cases (79.08%) than in none/mild (63.41%). Notably, 36.59% of patients rated as mild by ESAS-r were classified as moderate/severe by RDOS.

RDOS is a valuable tool for detecting respiratory distress in cancer patients unable to self-report. Early identification and comprehensive management of dyspnea are crucial, particularly in patients with compromised functional status, or advanced disease, and those vulnerable to undetection because of inability to self-report distress.

Hospice care has expanded significantly in recent decades; however, few studies have systematically examined how research themes in this field have evolved over time.

This study aimed to explore the temporal dynamics of hospice care research using topic modeling, identifying emerging and declining areas of focus.

A total of 14,862 hospice-related articles published up to April 2025 were retrieved from PubMed. Topic modeling analysis was conducted using Latent Dirichlet Allocation to extract thematic structures across the corpus. The optimal number of topics was determined using perplexity, the elbow method, and coherence scores. Temporal trends were assessed across four stages defined by major World Health Organization milestones: the (1) Foundation (≤2001), (2) Expansion (2002–2013), (3) Institutionalization (2014–2019), and (4) Post-pandemic Transition (2020–2025) periods.

Ten major research topics were identified, including caregiver support, advance care planning, access to hospice care, and mortality trends. Topic prevalence shifted over time, with increased attention to caregiver support and advance care planning during the Expansion and Institutionalization periods and heightened focus on access to care and mortality trends during the Post-pandemic Transition period.

Hospice research has shifted from foundational and conceptual inquiries to more applied and policy-oriented themes. The findings reflect the field’s growing institutionalization and underscore the need for sustained research targeting underserved areas to promote equity and responsiveness in end-of-life care.

Complementary therapies are gaining interest in palliative care. This study investigated the implementation of a complementary and integrative medicine (CIM) service on a palliative care unit of a Tertiary Care Center in Switzerland.

This study aims to explore how health care professionals, patients, and family members perceive complementary medicine in specialized palliative care, identify related challenges and opportunities, and develop strategies for their effective and sustainable implementation into routine practice.

In a first step, to check acceptability, in 2016, an interview study was carried out by conducting qualitative interviews with nurses, physicians and patients, and their relatives. In a second step, based on the results of the structured interviews, CIM experts developed complementary nursing interventions followed by an educational program and establishing CIM service on the ward.

Eight nurses, six doctors, four patients, and three relatives were interviewed. The interviews revealed a generally positive attitude among all stakeholders with high acceptability. Key challenges faced by medical staff included time management, training needs, and interdisciplinary communication. Patients and relatives emphasized the need for CIM to alleviate symptoms, improve quality of life, and enhance confidence in integrated care. The developed nursing interventions include selected measures (wraps/compresses and rhythmic embrocations) targeting common symptoms like pain, nausea, anxiety, and respiratory distress. To ensure quality control and sustainability, the concept also features an organizational framework, regular specialist training, and a detailed manual and accessible videos, along with guidelines for documentation and quality assurance.

Medical professionals, patients, and relatives viewed the implementation of complementary nursing interventions as beneficial for enhancing symptom management in palliative care. Establishing appropriate framework conditions based on current implementation research is essential, and further research on effectiveness and long-term implementation is needed.

Hospitalized patients with serious illness often face delayed or limited access to palliative care. Embedded hospital primary palliative care (HPPC), led by social workers and nurse practitioners, may deliver more timely, needs-based support compared with referral-based specialty palliative care (SPC).

To compare demographics, clinical characteristics, acute care utilization, and sustainability of an embedded HPPC model versus SPC in hospital medicine.

We conducted a retrospective cohort study of adults receiving palliative care consults at a New York City academic medical center during two periods: March 2019–February 2020 (HPPC1 vs. SPC) and June 2021–May 2022 (HPPC2 vs. SPC). Variables included demographics, Karnofsky Performance Status (KPS), comorbidities, mortality index, goals-of-care documentation, ICU admission, length of stay, discharge disposition, and 30-day readmissions. Outcomes were compared across groups and periods.

HPPC patients were older (mean 69.6 vs. 65.2 years; 71.7 vs. 65.0 years), had higher KPS, lower predicted mortality, and more often pursued life-prolonging goals than SPC patients. ICU admissions and hospital stays were consistently lower in HPPC cohorts. Demographic diversity was similar, with ∼27% Black, 23% Latinx, and 30% Medicaid-insured patients in HPPC groups. Volume, patient mix, and utilization outcomes were consistent across HPPC1 and HPPC2, demonstrating sustainability.

An embedded SW/NP-led palliative care model in hospital medicine improves access, reduces acute care use, and is sustainable over time. This approach supports timely, culturally sensitive, needs-based palliative care and may be scalable for hospital-based delivery.

Adolescents living with serious illness have unique developmental and psychosocial needs that require special consideration and care. This population faces an increased risk of isolation, depression, and anxiety. Virtual reality (VR) may provide an opportunity for adolescents living with serious illness to interact with peers, mitigating loneliness.

We evaluated the feasibility, acceptability, and potential impact of a VR social support group for adolescents living with serious illness.

This research took place at a quaternary children’s hospital in Canada. Participants were nine adolescents with serious illness, who attended at least one VR social support group and four of their caregivers.

Interviews took place prior to the first session, then after the first, second, and fifth sessions attended, as well as at three and six months after the first session regardless of the number of sessions attended. At each interview, adolescents completed the UCLA Loneliness Scale, and both adolescents and caregivers answered questions about the adolescents’ experiences using VR.

We met five of eight a priori criteria for feasibility and acceptability of the intervention. While loneliness scores did not change, the opportunities for social connection and feelings of belonging were evident. Minor technical difficulties with the VR equipment were mostly resolved independently. Attendance varied, primarily due to illness. Feedback showed unanimous support and excitement for continuing and further developing this intervention.

VR technology is a new platform with promising opportunities for social support for seriously ill adolescents.

Adult frailty scales rely on performance tests that are rarely feasible in children. Quantitative muscle ultrasound (US) could provide an objective bridge, but its pediatric utility is untested.

To explore whether US-derived biomarkers Z-scores can cluster into recognizable patterns that serve as preliminary building blocks toward a quantitative definition of pediatric frailty.

Eight-month, single-center exploratory cross-sectional observational study in a pediatric palliative care unit.

Twenty-four consecutively enrolled children (1–18 years) with advanced but clinically stable, life-limiting conditions (83.5% neurometabolic, 16.5% oncologic), recruited with parental informed consent.

Rectus femoris and vastus intermedius were scanned with standardized presets (64 dB gain; 4 cm depth). Age- or weight-adjusted Z-scores for muscle thickness, echo-intensity (EI), and subcutaneous-fat were derived from a published pediatric dataset. Each child was plotted in 3-D “health cubes” (x = muscle-thickness z, y = EI z, z = subcutaneous-fat z).

All patients lay outside the ± 2 SD “normality cube” for at least one reference set.

In this modest, single-center cohort, pediatric palliative patients consistently deviated from normative muscle US ranges, forming a distinct cluster outside the “healthy” 3-D zone. While not diagnostic, these patterns support further, larger, longitudinal studies to develop composite US indices and formal cut-points for pediatric frailty. This visual framework may accelerate that process by highlighting multidimensional outliers at the bedside.

To identify differences in the number and characteristics of patients who completed a Medical Durable Power of Attorney (MDPOA) form through the patient portal during the COVID-19 pandemic compared to pre-pandemic.

Data, including portal-based MDPOA forms, were extracted from the electronic health record at one U.S. institution (July 2017–May 2023). The pandemic period was defined as March 26, 2020, or after.

397,682 patients added an MDPOA form during the study period. There was an increase in the proportion of portal-based MDPOA forms from 4.6% pre-pandemic to 5.1% during the pandemic (p < 0.001). Patients who used the portal to complete the MDPOA form during the pandemic were younger (p < 0.001) and had fewer comorbidities (p < 0.001) compared to pre-pandemic patients who completed a portal-based MDPOA form.

MDPOA completion is important for patients of all ages and health statuses. Having MDPOA tools within a patient portal can support uptake among younger, healthier populations.

Using time-limited trials of low-dose, sustained-release morphine to reduce chronic breathlessness to evaluate net effects may generate opioid withdrawal symptoms if medication is ceased. This sub-study of a larger randomized, placebo-controlled, double-blind trial aimed to evaluate if this occurred.

People with modified Medical Research Council breathlessness scores of 3 or 4 and chronic obstructive pulmonary disease were eligible for a dose-increment titration phase (≤3weeks) and blinded extension (<26 weeks). Participants filled out the Subjective Opioid Withdrawal Scale (SOWS) daily for three days after ceasing/completing study medication (score 0–60; scores >20/60 severe opioid withdrawal). Active therapy was compared with placebo, and then, for people on morphine, comparisons between higher doses (24 mg, 32 mg), and lower doses (8 mg, 16 mg) and duration were undertaken.

Data were available for 126/156 participants (47% female, median age 73). Placebo or active therapy (Days 1–3) showed no statistically significant differences in SOWS scores (p > 0.05 for all days; Day 1 median 3/60 [IQR 1, 5] compared with 2/60 [IQR 1, 6], respectively; p = 0.475). Neither morphine duration nor dose were significantly different. Two people in the lower dose group in the extension phase had scores >20 for all three days. Individual symptoms that may draw clinical attention to morphine withdrawal include anxiety, a runny nose, perspiration, shaking, hot flushes, or nausea.

This preplanned substudy quantified risks of people experiencing self-reported symptoms of opioid withdrawal using a validated tool to inform discussions between clinicians and people with chronic breathlessness.

Patients with advanced brain tumors often experience dysphagia and excessive drooling, leading to respiratory complications and a reduced quality of life. We evaluated the clinical utility of transdermal scopolamine (TS) in pediatric patients with brain tumors.

A 5.0% scopolamine ointment was prepared in-house and applied once daily to the mastoid regions behind the ears.

Five patients (four children and one adolescent) with brain tumors received TS treatment. All patients had low Lansky/Karnofsky performance status scores, ranging from 20 to 40. Within two weeks of treatment, four patients showed objective improvements, including reduced suctioning and oxygen requirements and alleviation of respiratory symptoms. No severe or unexpected adverse events related to TS were observed. Four patients were able to transition to home-based care.

The findings of this study suggest that TS may be a safe and effective option for managing salivation in this population.

End-of-life HIV research places emotional demands on staff, yet evidence for brief compassion training to enhance resilience is limited.

To assess the feasibility and impact of a four-week compassion training program on self-compassion and professional well-being.

Prospective, single-group, repeated-measures pilot with surveys at baseline (T1), post-program (T2), and 12-week follow-up (T3).

Twenty-four professionals from the UC San Diego Last Gift program (83% women, 63% aged 25–44 years).

Validated scales assessed self-compassion, compassion for others, professional quality of life, and work climate; changes were analyzed with Friedman and Bonferroni-adjusted Wilcoxon tests.

Over-identification (p = 0.002), workplace joy (p = 0.005), and supportive work environment (p = 0.003) improved. Meditation frequency increased from T1 to T2 (p < 0.001) and remained higher at T3 (p = 0.006).

A brief compassion program was feasible and improved over-identification and work-climate measures, supporting further evaluation of compassion support training in palliative and end-of-life research settings.