Palliat Med
· 2026 Jun · PMID 41872740
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BACKGROUND: Circadian rest-activity rhythm disorders, affecting up to 60% of patients with advanced cancer, are associated with poor clinical outcomes. As disease severity correlates with circadian disruption, a multi-mo...BACKGROUND: Circadian rest-activity rhythm disorders, affecting up to 60% of patients with advanced cancer, are associated with poor clinical outcomes. As disease severity correlates with circadian disruption, a multi-modal approach may be necessary to improve circadian rhythmicity in this population. AIM: To assess the feasibility, primarily in relation to recruitment, retention, usability and acceptability, of a multi-modal, non-pharmacological intervention in patients with advanced cancer and a circadian rest-activity rhythm disorder. DESIGN: A prospective, single arm, outpatient feasibility study took place over 8-weeks incorporating a clinical review, daily bright light therapy, online cognitive behavioural therapy for insomnia course, and personalised physical activity plan. SETTINGS/PARTICIPANTS: Adult (⩾18 years old) outpatients from an acute hospital and hospice service with locally advanced or metastatic cancer and a circadian rest-activity rhythm disorder. RESULTS: Participants ( = 20) completed questionnaires (80%) and accelerometry (75%) and engaged with the CBT-I course (100%), bright light therapy (80%) and physical activity plan (100%). Participants reported acceptability and usability of the intervention, with no intervention-related adverse events noted. Preliminary improvements were seen in scores for fatigue ( = 0.003) and insomnia ( = 0.021), and symptom-related distress scores (all < 0.01). Scores also improved for social ( = 0.001), cognitive ( = 0.006), emotional ( = 0.012), and physical ( = 0.046) functioning. CONCLUSIONS: The study demonstrated acceptability, usability and preliminary efficacy for the intervention, and warrants further investigation with a definitive trial to assess the impact on clinical outcomes of interest.
Hirschinger H, Rémi C, Jäger E
… +14 more, Nittka S, Hetjens S, Saussele S, Merx K, Koch J, Abba M, Ghazal M, Hofheinz RD, Michaeli T, Sperk E, Kohlbrenner K, Hofmann WK, Gencer D, Boch T
Palliat Med
· 2026 Jun · PMID 41866851
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BACKGROUND: Terminally ill patients often have difficulty taking medications. Suitable, minimally invasive, fast-acting administration routes are particularly important. Trials on alternative drug administration routes i...BACKGROUND: Terminally ill patients often have difficulty taking medications. Suitable, minimally invasive, fast-acting administration routes are particularly important. Trials on alternative drug administration routes in palliative care are essential to base therapy decisions on evidence rather than experience. AIM: To evaluate the effectiveness of intranasal compared with subcutaneous midazolam for the initial management of terminal agitation in palliative care patients. DESIGN: Randomized, investigator-initiated open-label phase-II trial, August 2022-July 2024. SETTING/PARTICIPANTS: Monocentric trial at the palliative care ward of a German University Hospital. 180 patients were assessed for suitability, 60 patients (median age, 68 years (SD 12.3), 26 female) were randomized 1:1 and analyzed. Patients with terminal agitation fulfilling all eligibility criteria were randomized to midazolam 5 mg administered either intranasal ( = 30) or subcutaneous ( = 30). PRIMARY OUTCOME: Improvement of terminal agitation by midazolam administration assessed by RASS-PAL-score. SECONDARY OUTCOME: Midazolam plasma concentrations after administration. RESULTS: Median RASS-PAL-scores decreased significantly in both groups. Intranasal group: 2 at baseline, to -1 at 5 min and -2 at 20 min. Subcutaneous group: 1,-0 and -1. Within-group reductions exceeded the clinically relevant threshold of ⩾ 1 point at 5 and 20 min (all < 0.0001). Median midazolam plasma concentrations were significantly higher intranasal (5 min: 90 ng/ml, 20 min: 83 ng/ml) than subcutaneous (5 min: 15 ng/ml, 20 min: 24 ng/ml). No patients withdrawn due to adverse effects. CONCLUSION: Midazolam intranasal administration was effective in reducing terminal agitation and achieves higher plasma concentrations compared to subcutaneous administration. It is an alternative route of application to improve end-of-life care for terminally ill patients. TRIAL REGISTRATION: MinTU Study 173-01, Eudra CT No.: 2021-004789-36, DRKS ID: 00026775 (07.07.2022, https://drks.de/search/de/trial/DRKS00026775).
Jones KF, Wormwood JB, Becker WC
… +9 more, Gurewich D, Linsky AM, Meier DE, Merlin JS, Silveira MJ, Skarf LM, Pattison D, Wyse JJ, Schwartz AW
J Palliat Med
· 2026 Mar · PMID 41858238
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BACKGROUND: Buprenorphine is an underused opioid therapy for patients with serious illnesses. Using the principles of implementation science, we developed, distributed, and tested a Buprenorphine Pocket Card and Tool Kit...BACKGROUND: Buprenorphine is an underused opioid therapy for patients with serious illnesses. Using the principles of implementation science, we developed, distributed, and tested a Buprenorphine Pocket Card and Tool Kit (Bupe PC&TK). OBJECTIVES: We conducted an online survey to assess buprenorphine learning needs, confidence, and knowledge. We then tested the impact of the Bupe PC&TK using a pre-/poststudy design. SETTING/SUBJECTS: Palliative care clinicians located throughout the United States. MEASUREMENT: Investigator-initiated online mixed-methods survey at baseline and six weeks following distribution of a Bupe PC&TK. RESULTS: Among the 179 baseline participants, most were physicians ( = 114) with more than six years of opioid prescribing experience ( = 99). The majority rated buprenorphine prescribing as an important skill, but only 15 participants reported they were very confident in prescribing or managing buprenorphine, and inaccurate knowledge was common. Participants reported that information on buprenorphine dosing and initiation would be most helpful in a Bupe PC&TK. Fifty-six participants completed the follow-up survey; the majority were physicians ( = 33). Most participants used the Bupe PC&TK ( = 47) and rated it as helpful or very helpful ( = 45). A paired samples -test revealed that participants were significantly more confident after receiving the Bupe PC&TK ( < 0.001). Knowledge accuracy improved for buccal buprenorphine ( = 0.003) and formulations for opioid use disorder ( < 0.001). CONCLUSION: Palliative care clinicians ascribe a large degree of importance to prescribing buprenorphine but have knowledge and confidence gaps. The Bupe PC&TK can be readily implemented to increase clinician confidence and knowledge in prescribing buprenorphine to patients with serious illness.
J Palliat Med
· 2026 May · PMID 41858215
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Patients facing serious illness may respond to distressing medical information with avoidance or denial, limiting their ability to engage in values-based decision-making. Exposure therapy-an evidence-based psychological...Patients facing serious illness may respond to distressing medical information with avoidance or denial, limiting their ability to engage in values-based decision-making. Exposure therapy-an evidence-based psychological treatment for anxiety disorders-offers conceptual tools that can inform communication and therapeutic approaches with patients who struggle with avoidance in the context of serious illness. This article describes the care of a patient with advanced cancer who declined prognostic and hospice conversations due to death-related anxiety. Drawing on core exposure therapy principles-including safety, individualization, titration, and enhancement of coping-we illustrate how serious illness communication strategies can be intentionally adapted to support patient engagement, reduce distress, and strengthen psychological resilience. Through techniques such as progressive disclosure, calibration of language potency, and the "container" metaphor, clinicians can match communication to patients' emotional readiness, enhancing tolerance over time. Integrating exposures-informed approaches into palliative care practice helps bridge the gap between emotional avoidance and values-concordant care.
Tunnard-Johnson I, Chambers RL, May P
… +2 more, Jackson-Hill F, Higginson IJ
Palliat Med
· 2026 Jun · PMID 41851954
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BACKGROUND: Despite the growing older population with increased chronic conditions in rural and coastal areas, it is currently unclear how location impacts where people die. AIM: To compare where people with dementia and...BACKGROUND: Despite the growing older population with increased chronic conditions in rural and coastal areas, it is currently unclear how location impacts where people die. AIM: To compare where people with dementia and people with cancer die across rural, coastal and urban areas, and examine associated factors. DESIGN: A systematic review reported in accordance with PRISMA guidelines. DATA SOURCES: MEDLINE, PsycINFO, CINAHL, Embase and ASSIA databases were searched 2005-November 2024. RESULTS: Twenty-nine studies were included. Fifteen studies compared rural and urban populations, eleven urban only, two coastal urban and one rural. No studies considered the coastal context when examining place of death. 6,988,050 cancer and 3,517,909 dementia decedents were included across seventeen cancer studies, nine dementia, and three both. All studies were rated high quality. Rural, dementia decedents were more likely to die in residential care than urban residents, who were more likely to die in hospital. Large studies of cancer populations found trends towards home deaths for rural residents and hospital for urban, but this was inconsistent across countries. Thirteen studies reported factors associated with place of death for people with cancer, compared to four dementia. DISCUSSION: Hospital deaths appear more common in urban areas, with more home/care home deaths in rural areas. Coastal patterns are poorly described. Better understanding how these locations are associated with place of death, especially for people with dementia, is needed to guide more equitable, efficient service planning. Further work on associated factors will support a nuanced understanding of drivers of place of death.
J Palliat Med
· 2026 Jun · PMID 41849216
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Inpatient clinicians may experience distress when providing complex care for the millions of Americans with serious illness hospitalized yearly. Understanding the types and clinical impact of clinician distress when cari...Inpatient clinicians may experience distress when providing complex care for the millions of Americans with serious illness hospitalized yearly. Understanding the types and clinical impact of clinician distress when caring for seriously ill inpatients can inform supportive interventions to minimize burnout symptoms. This study aims to identify distinct distress trajectories among clinicians caring for seriously ill inpatients over time using mobile ecological momentary assessments (mEMAs).We performed latent class cluster analysis of clinicians' prospective serial mEMAs to identify unique distress trajectories and estimated univariate ordinal logistic regression models using generated estimating equations methods to explore the relationship between distress type and patient and clinician characteristics.We identified four distinct clinician distress trajectories from clinician responses ( = 142): low distress (23.2%), moderate distress (33.1%), high distress (23.9%), and variable distress (19.7%). The majority of patients had a primary malignancy (77.9%). Clinicians self-reported multiple symptoms: fatigue (59.3%), stress (57.4%), worry (47.2%), insomnia (33.3%), anger (13.9%), sadness (9.3%), and pain (4.6%). Clinicians' discipline (advanced practice provider [APP] vs. physician; = 9.11, = 0.0025) and emotions ( = 11.29, = 0.0008) were significantly associated with the distress trajectory. Clinicians who had an increase in reported emotions were likely to be in a higher distress trajectory (odds ratio [OR] 1.90, = 0.001), as were APPs compared with physicians (OR 6.16, = 0.003).Clinicians experience distinct trajectories of distress while caring for seriously ill inpatients. While all groups experienced degrees of distress, identifying clinicians with high distress may enable health systems to target supportive interventions and resources in a timely manner to mitigate potential burnout and other emotional states.
J Palliat Med
· 2026 Mar · PMID 41849215
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Survivors of human trafficking experience profound trauma with long-lasting psychological, physical, and social consequences that can complicate medical care, particularly in the context of serious illness. This case hig...Survivors of human trafficking experience profound trauma with long-lasting psychological, physical, and social consequences that can complicate medical care, particularly in the context of serious illness. This case highlights the palliative care approach to a 38-year-old woman with metastatic cervical cancer and a history of trafficking-related trauma. The clinical team encountered nuanced challenges, including disrupted trust, limited social support, high symptom burden, and distress related to bodily autonomy. A trauma-informed, multidisciplinary team-comprised of palliative care, gynecological oncology, psychiatry, and social work-prioritized safety, choice, and trust-building to align care with the patient's values and goals. Despite significant health inequities and psychosocial vulnerabilities, individualized care planning and intentional communication supported dignity, symptom control, and emotional safety during a prolonged hospitalization. This case illustrates the ethical and relational dimensions of caring for survivors of trafficking and underscores the importance of trauma-informed care principles, cultural humility, and interdisciplinary collaboration in palliative settings.
Alexander S, St Louis J, Rapoport A
… +4 more, Horan R, Korenblum C, Weingarten K, Widger K
J Palliat Med
· 2026 May · PMID 41849212
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BACKGROUND: 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 anxi...BACKGROUND: 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. OBJECTIVES: We evaluated the feasibility, acceptability, and potential impact of a VR social support group for adolescents living with serious illness. SETTING/SUBJECTS: 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. MEASUREMENTS: 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. RESULTS: 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. CONCLUSIONS: VR technology is a new platform with promising opportunities for social support for seriously ill adolescents.
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.
Patynowska KA, McConnell T, Finucane A
… +6 more, Maun E, Fantoni ER, Clemo J, Leone E, Wynne N, Hasson F
Palliat Med
· 2026 Jun · PMID 41848223
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BACKGROUND: Healthcare assistants (paid nursing support workers without professional qualifications) provide care for terminally ill patients but remain understudied in palliative care research. Working alone in patients...BACKGROUND: Healthcare assistants (paid nursing support workers without professional qualifications) provide care for terminally ill patients but remain understudied in palliative care research. Working alone in patients' homes presents a distinct set of intersecting challenges: decision-making in distressing situations, professional isolation and limited access to training and support. Despite growing recognition of the importance of staff wellbeing for care quality and workforce retention, little is known about factors affecting wellbeing and intention to leave among this workforce. AIM: To explore factors affecting wellbeing and intention to leave among lone working healthcare assistants providing palliative and end-of-life care in the community. DESIGN: Qualitative study combining free-text survey responses and semi-structured interviews, analysed using reflexive thematic analysis. SETTING/PARTICIPANTS: Healthcare assistants from a charitable hospice organisation in the United Kingdom. RESULTS: One-hundred and eighty-three participants completed free-text survey questions; 14 participated in interviews. A number of societal, organisational and individual factors impacting on wellbeing and intention to leave were generated. Healthcare assistants experience high job satisfaction from meaningful work alongside systematic undervaluation. Many factors that influence wellbeing and intention to leave fall within organisational control, particularly support systems, workplace culture, recognition, and training opportunities. CONCLUSIONS: Organisations have clear opportunities to improve healthcare assistants' wellbeing and retention through targeted interventions addressing support, recognition, and professional development needs.