Oslin E, Baumgarten NE, Julian E
… +2 more, McDermott A, Bogetz J
J Palliat Med
· 2026 Mar · PMID 41849198
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BACKGROUND: Children with severe neurological impairment (SNI) and their families face many challenges in the hospital setting, where there is limited time to understand the child's full quality of life. Photo-narratives...BACKGROUND: Children with severe neurological impairment (SNI) and their families face many challenges in the hospital setting, where there is limited time to understand the child's full quality of life. Photo-narratives use images to share personal perspectives and may facilitate understanding between families of children with SNI and clinicians. OBJECTIVE: This study aimed to examine the potential impact of photo-narratives in the inpatient setting. DESIGN: Semi-structured audio-recorded interviews were completed with parents after their child's recent hospitalization, as well as with clinicians involved in their child's care. SETTING/SUBJECTS: Parents of children with SNI and clinicians at a single U.S. children's hospital. MEASUREMENTS: In the first part of the interviews, parents discussed their child's hospital care. In the second part, they created a photo-narrative for their child and discussed its potential impact. Photo-narratives were then viewed by the child's clinicians during similarly structured interviews. Data were analyzed by a multidisciplinary research team using thematic analysis. RESULTS: A total of 56 participants included 27 parents (23 [85%] mothers and 4 [15%] fathers) and 29 multidisciplinary clinicians. Forty-five percent of parents self-identified as having a minoritized racial/ethnic background. Clinicians included 12 (41%) attendings, 10 (35%) nurses, 5 (17%) medical trainees, and 2 (7%) respiratory therapists. Before creating the photo-narrative, themes focused on clinicians' limited perspectives and assumptions. Themes after the photo-narrative focused on its use for medical/developmental applications, understanding the child's full life, and catalyzing humanistic care. CONCLUSION: Photo-narratives have the potential to promote humanistic care among parents of children with SNI and inpatient clinicians.
Peñafiel JF, Mingorence AN, Mrtín VP
… +1 more, Martino Alba R
J Palliat Med
· 2026 May · PMID 41848680
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BACKGROUND: 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. OBJECTIVE: To...BACKGROUND: 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. OBJECTIVE: 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. DESIGN AND SETTING: Eight-month, single-center exploratory cross-sectional observational study in a pediatric palliative care unit. PARTICIPANTS: 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. PROCEDURES: 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). RESULTS: All patients lay outside the ± 2 SD "normality cube" for at least one reference set.Median (IQR) muscle-thickness z = -4.9 (-5.6 to -4.1); EI z = +3.7 (+2.1 to +5.8).Thickness and EI were inversely correlated (ρ = -0.62, = 0.002); lower thickness modestly predicted shorter time-to-death (ρ = -0.55, = 0.01). CONCLUSIONS: 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.
Bottussi A, D'Andria Ursoleo J, Sullivan DR
… +16 more, Kohn R, Haines KJ, Applebaum AJ, Byrne-Martelli S, Hadler R, Hiser S, Maguire JM, McCall M, Mehta A, Tolchin DW, Bruera E, Mercadante S, Tolchin B, Voigt LP, Rosa WE, Monaco F
J Palliat Med
· 2026 Mar · PMID 41848674
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Intensive care unit (ICU) mortality rates have substantially declined over the past few decades. Accordingly, there has been an increase in the number of ICU survivors, who are often burdened by long-term sequelae and hi...Intensive care unit (ICU) mortality rates have substantially declined over the past few decades. Accordingly, there has been an increase in the number of ICU survivors, who are often burdened by long-term sequelae and high morbidity following their discharge. The term postintensive care syndrome (PICS) was first coined in 2012 to describe this constellation of physical, psychological, and cognitive sequelae, which may persist long after acute care hospitalization and may also affect family members. In this context, the timely integration and delivery of palliative care has the potential to alleviate the suffering experienced by both ICU survivors and their families. In this article, an interdisciplinary team presents ten tips to describe PICS and enhance the quality of care for palliative care clinicians caring for people with PICS.
J Palliat Med
· 2026 Mar · PMID 41848669
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BACKGROUND: Palliative care improves quality of life for patients and families. More research is needed to understand how care delivery and patient and family experiences have changed in the 5 years since the COVID-19 pa...BACKGROUND: Palliative care improves quality of life for patients and families. More research is needed to understand how care delivery and patient and family experiences have changed in the 5 years since the COVID-19 pandemic onset. OBJECTIVE: To systematically review the delivery of palliative care and patient and family experiences in palliative care since the COVID-19 pandemic onset. METHODS: The search examined articles indexed in Medline, Science Direct, and Scopus, published between January 2020 and April 2025. Articles were included if they were peer-reviewed and included hospital and home-based palliative care for pediatric and adult patients and their families and examined changes in (a) patient experiences, (b) family experiences, or (c) aspects of service delivery regarding palliative care since the COVID-19 pandemic onset. RESULTS: Of 529 abstracts screened, 10 met the inclusion criteria for review. The most common patient and family experiences among the studies included caregiver social isolation (80%) and increased distress (70%). Among the studies, delivery changes included precautions on infection control (100%) and telehealth (90%). Most studies focused on adults (70.0%), typically cancer or COVID-19 populations (20% and 30%, respectively), and heterogeneous, seriously ill populations (50%). No study commented on the impact of COVID-19 using data collected after 2022, 10% were prospective, and 20% of studies reported on participants' race or ethnicity. CONCLUSIONS: This systematic review shows that since the COVID-19 pandemic onset, studies of palliative care programs have found that caregivers experience more distress and isolation, and programs have modified infection control precautions and increased the availability of telehealth. Implications for the future of family-centered palliative care are discussed.
Williamson B, Merrill G, Slomoff T
… +3 more, Brenner KO, Gamble A, Chammas D
J Palliat Med
· 2026 Jun · PMID 41841463
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Acceptance and commitment therapy (ACT) is a psychotherapeutic model that focuses on developing psychological flexibility by encouraging patients to attune to their present moment experience, cultivate openness to those...Acceptance and commitment therapy (ACT) is a psychotherapeutic model that focuses on developing psychological flexibility by encouraging patients to attune to their present moment experience, cultivate openness to those experiences, and respond to those experiences with committed action that is rooted in their values. By combining the six core processes of ACT (attention to the present moment, self-as-context, defusion, acceptance, values, and committed action) with serious illness communication skills, palliative care clinicians can nurture psychological flexibility for patients facing uncertainty and difficult internal experiences common in serious illness. This article reviews a case study with examples of language and tools clinicians can use to bring these core processes into their work with patients.
Lawton AJ, Zehm A, Dow LA
… +9 more, Webb JA, Malhotra S, Strand JJ, Berns SH, Buss MK, Santivasi WL, Newport KB, Jones CA, Lindenberger EC
J Palliat Med
· 2026 Mar · PMID 41841451
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Most palliative care (PC) physicians will change jobs over the course of their career, yet few supports exist to guide them through this often unfamiliar process. Job transitions frequently elicit stress and uncertainty,...Most palliative care (PC) physicians will change jobs over the course of their career, yet few supports exist to guide them through this often unfamiliar process. Job transitions frequently elicit stress and uncertainty, as individuals balance personal and professional priorities, navigate complex negotiations, and assume the inherent risks of pursuing new opportunities. Yet, when approached intentionally, a job transition can also be a transformative process that allows for self-discovery, cultivation of new skills and connections, and reshaping of one's professional identity. This article, written by a team of PC physicians who have made job transitions themselves, offers 10 tips for navigating this professional step successfully. With emphases on authentic communication, skilled mentorship, relationship building, and exploration of local culture-the article offers practical advice to help PC physicians navigate a job transition confidently, while staying grounded in their personal values and the work they find most meaningful.
Ng SL, Wei Tan FK, Woo YY
… +3 more, Goh SSL, Neo SH, Murugam V
J Palliat Med
· 2026 Mar · PMID 41817184
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Seizures are common at the end of life. Seizures can be especially distressing if they are refractory to conventional antiepileptic treatments. We present the histories of two terminally ill patients with refractory stat...Seizures are common at the end of life. Seizures can be especially distressing if they are refractory to conventional antiepileptic treatments. We present the histories of two terminally ill patients with refractory status epilepticus who did not respond to standard antiepileptic protocols. Seizure control was eventually achieved with the use of parenteral ketamine infusion dosed at 1 mg/kg/hour. Parenteral ketamine infusion is not traditionally used in palliative care for seizure management. However, our experience shows there is promise that it can be a viable option for refractory status epilepticus. For one of the patients, ketamine was initiated in the general ward setting. This highlights that seizure control can be achieved without a transfer to intensive care as such a transfer may not be consistent with a dying patient's goals of care. Further studies should be conducted in palliative care settings to evaluate the use of ketamine for terminal refractory status epilepticus.
Clapham S, Ayalew AA, Redwood L
… +4 more, Yates P, Auret K, Clark K, Currow D
J Palliat Med
· 2026 Jun · PMID 41817176
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Understanding how symptom outcomes vary by care setting helps optimize care.To compare trajectories of severe symptom distress in the final week of life across community and hospital settings.This retrospective consecuti...Understanding how symptom outcomes vary by care setting helps optimize care.To compare trajectories of severe symptom distress in the final week of life across community and hospital settings.This retrospective consecutive cohort study used point-of-care data from the Australian Palliative Care Outcomes Collaboration, which includes the Symptom Assessment Scale and Palliative Care Problem Severity Score. Mixed-effects logistic regression models were adjusted for clinical, demographic and temporal factors.Australian palliative care services ( = 165) contributed data for people who died between July 1, 2019, and June 30, 2024.Of 141,691 patients,73.6% were inpatients; 61.0% had a cancer diagnosis. Severe symptom prevalence was generally low (<5%). After adjusting important factors, inpatients had higher relative odds of severe pain-related (aOR: 1.20, 95% CI: 1.10, 1.30) and breathing-related distress (aOR: 1.55, 95% CI: 1.40, 1.70) compared with community patients; the corresponding absolute risk differences (ARDs) were minimal (pain: +0.36 percentage points; breathing: +0.79 percentage points). Conversely, inpatients had lower relative odds of severe fatigue (aOR: 0.86, 95% CI: 0.79, 0.94) and insomnia (aOR: 0.74, 95% CI: 0.66, 0.84), with small ARDs (fatigue: -0.32; insomnia: -0.26). Over time, severe breathing-related distress increased significantly as death approached, while pain-related distress increased slightly. Inpatients were also less likely to experience family/carer issues (aOR: 0.78, 95% CI: 0.72-0.84), or other symptoms (aOR: 0.57, 95% CI: 0.53-0.61), with small ARDs (family/carer: -0.56; other symptoms: -0.26).While some relative differences were noted between settings, absolute differences were minimal, suggesting clinically comparable outcomes. These national data show that severity of symptoms in the two care settings are similar, reassuring patients, families, and health care professionals.
Pelz S, Kobelt I, Schettle M
… +2 more, Hertler C, Blum D
J Palliat Med
· 2026 Jun · PMID 41804819
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BACKGROUND: Palliative care patients often experience sarcopenia, which can cause overestimation of kidney function by creatinine-based estimated glomerular filtration rate (eGFR) and inappropriate drug dosing. Data on c...BACKGROUND: Palliative care patients often experience sarcopenia, which can cause overestimation of kidney function by creatinine-based estimated glomerular filtration rate (eGFR) and inappropriate drug dosing. Data on cystatin C (CysC) use are scarce. OBJECTIVES: To examine intra-individual differences between creatinine- and CysC-based eGFR in palliative patients and assess the frequency of renally eliminated drugs prescribed. DESIGN: Retrospective, single-center cohort study. SETTING/SUBJECTS: All patients admitted in 2023 to the palliative care unit of the University Hospital Zurich, Switzerland. Of 206 patients, 178 had eGFR data, and 144 with consent were included. MEASUREMENTS: Data including creatinine, CysC, and prescribed medications were extracted from electronic records. eGFR was calculated using Chronic Kidney Disease Epidemiology Collaboration (CKD-EPI) 2009 (creatinine) and CKD-EPI 2012 (CysC, combined). Intraindividual discrepancies >15 mL/min/1.73m were defined as clinically relevant. RESULTS: Paired values were available for 85 patients; 53% showed clinically relevant discrepancies (median 17 mL/min/1.73m). In 22% of patients the discrepancy exceeded 30 mL/min/1.73m. Diabetes was the only factor associated with differences. Acute kidney injury (AKI) occurred in 32% and was strongly linked to mortality, whereas discrepancies were not. Patients received a median of 19 drugs; of the 20 most frequently prescribed, 7 were renally eliminated. Over one-third with relevant discrepancies received two such drugs. CONCLUSIONS: Clinically relevant eGFR discrepancies are common in palliative care patients and may cause misclassification and dosing errors. CysC testing should be used selectively when prescribing renally eliminated drugs with toxicity risk, underscoring the need for individualized prescribing and prospective validation.
Ito S, Morita T, Mori M
… +10 more, Maeda I, Hatano Y, Yamaguchi T, Otani H, Yamagiwa T, Kizawa Y, Tsuneto S, Shima Y, Masukawa K, Miyashita M
J Palliat Med
· 2026 Jun · PMID 41804809
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BACKGROUND: Sudden unexpected death can occur even among patients with advanced cancer receiving hospice and palliative care. How bereaved families perceive this remains unclear. OBJECTIVES: To investigate the prevalence...BACKGROUND: Sudden unexpected death can occur even among patients with advanced cancer receiving hospice and palliative care. How bereaved families perceive this remains unclear. OBJECTIVES: To investigate the prevalence of sudden unexpected death from bereaved family perspectives, the level of agreement with physician perspectives, and their association with bereaved families' mental health. DESIGN/SETTING/SUBJECTS: We analyzed longitudinally linked data from a prospective cohort of advanced cancer patients in 23 palliative care units in Japan and a nationwide survey of bereaved families. MEASUREMENTS: Sudden unexpected death was assessed using previously reported definitions: (1) "surprise death" and (2) "rapid decline death," evaluated from both physician and bereaved family perspectives, and (3) "performance status-defined sudden death," evaluated only by physicians. Agreement among definitions was analyzed using kappa statistics. Bereaved families' mental health was evaluated using the Patient Health Questionnaire-9. RESULTS: Among 611 cases, "surprise death" and "rapid decline death" were more frequent from bereaved family (46.5% and 51.2%, respectively) than physician (8.2% and 16.5%, respectively) perspectives. Agreement between family and physician perspectives was low (κ = 0.04-0.14). The bereaved family-perceived "rapid decline death" was significantly correlated with depression (adjusted odds ratio = 1.75, = 0.028), whereas physician-perceived sudden unexpected death showed no significant correlation. CONCLUSIONS: Compared with physicians' perspectives, bereaved family members perceive death to be sudden or unexpected more frequently and differently, and their perceptions are associated with postbereavement mental health. Further research is needed to explore strategies to improve communication and support families' psychological preparedness when a patient's death may be sudden and unexpected.
Horowitz RK, Rosa WE, Zarrabi AJ
… +1 more, Swogger MT
J Palliat Med
· 2026 Mar · PMID 41783943
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BACKGROUND: Psychospiritual distress (PSD) causes profound suffering in people with serious illness, yet treatment options are few and evidence of their efficacy is modest. Although high-level evidence is limited, decade...BACKGROUND: Psychospiritual distress (PSD) causes profound suffering in people with serious illness, yet treatment options are few and evidence of their efficacy is modest. Although high-level evidence is limited, decades of preliminary research suggest that psychedelic-assisted psychotherapy (PAP), including ketamine-assisted psychotherapy (KAP), may alleviate the anxiety, depression, and existential distress associated with PSD. However, clinical examples and published implementation frameworks for integrating these interventions into palliative care are scarce. To help bridge this gap, we describe the development and delivery of a palliative care-embedded KAP program at an academic medical center. OBJECTIVE: To describe the design, implementation, and clinical experience of Pal-KAP, a safety-centered and equitably accessible KAP program embedded in outpatient palliative care. METHODS: We detail the program's origins, team composition and training, operational model, patient selection and consent process, session structure, safety protocols, and financial model. We summarize patient characteristics and treatment patterns and share illustrative clinical vignettes from the program's first 28 months. RESULTS: Between May 2023 and September 2025, 59 patients were referred for Pal-KAP screening; 43 met the eligibility criteria, and 30 elected to participate. Patients (age 19-76, mean 53) completed a median of 1.5 medicine sessions (range 1-5). Most had cancer (80%) or neurological disease (13.3%). Ketamine dose averaged 0.93 mg/kg intramuscularly, with minor adverse effects (anxiety, headache, nausea, insomnia, dizziness) and no serious adverse events. CONCLUSION: To our knowledge, this is the largest published cohort of KAP in an academic palliative care context. Our Pal-KAP experience suggests that KAP can be delivered safely and ethically, providing a practical blueprint for programs exploring innovative ways to address PSD.