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Despite the high frequency and severity of fatigue among patients with advanced cancer receiving immunotherapy, there are limited treatment options available. The aim of the study was to explore the effects of the methylphenidate (MP) with standardized physical activity (PA) on cancer related fatigue (CRF).
Methods
In this pilot study, patients with advanced cancer with clinically significant CRF (<34 on Functional Assessment of Cancer Illness Therapy – fatigue scale, FACIT-F), on anti-PD1 immunotherapy were eligible. Patients were randomized to standardized PA with either patient-controlled MP 5 mg (MP + PA arm) or matching Placebo (Pl + PA arm) twice daily for 14 days. The primary outcome was the change in the FACIT-F score. Secondary outcomes included changes in fatigue dimensions (Multidimensional Fatigue Symptom Inventory-Short Form (MSFI-SF), Functional Assessment of Cancer Therapy – General (FACT-G), Patient-Reported Outcome Measurement Information System-Fatigue (PROMIS-F), and hospital anxiety and Depression Scale (HADS).
Results
Of the 40 randomized patients, 34 were evaluable. The FACIT-F scores significantly improved in both the arms with mean (SD) change, effect size (ES) of 11(14), 0.87(P < .001); and 9(12), 0.74(P = .04) in MP + PA, and Pl + PA arms respectively. We also found significant improvements in PROMIS-F, ES − 1.05(P = .003), MFSI-SF(global), ES − 1.32(P < .001), and HADS-depression, ES − 0.92(P = .004) in the MP + PA arm; There were no significant differences in adverse events between groups.
Significance of results
Our preliminary study found MP + PA was associated with significant improvement in CRF scores. The fatigue dimensions and depression scores significantly improved in the MP + PA arm. Further comparative studies using MP + PA for CRF are justified.
Most people at the end of life wish to die at home. Lay carers are crucial to supporting a home death and key to a good death is management of symptoms; this may prevent unwanted hospital admissions. If a dying person is too weak to swallow, regular medicines are administered continuously via subcutaneous (SC) cannula. When symptoms “break through,” additional (or as-needed) doses can be given, usually by a visiting healthcare professional. Delayed symptom control can occur due to time taken for healthcare professionals to arrive at the home.
Lay carers can be trained to administer as-needed SC medicines; the practice is safe and legal in the UK, although not widely used. The “CARer-Administration of as-needed SC medication for breakthrough symptoms in people dying at home” (CARiAD) feasibility trial of lay carer administration in the UK was the first to conduct in-depth interviews with carers trained in the practice.
The objective of this paper is to give voice to carers and show how experiences reflect benefits and challenges of lay administration at the end of life.
Methods
Qualitative interviews with carers trained in the practice. Interviews were analyzed using Interpretive Phenomenological Analysis.
Results
Caring for a loved one at home during the last days of life is complex. Accounts reveal a desire to fulfill a loved one’s wishes by keeping them at home and having the death they wanted. Carers were afraid of uncontrolled symptoms, especially pain, empowered by the ability to help and grateful to avoid long delays. Potential for carer burden and fears of hastening death require careful reassurance from health care professionals.
Significance of results
We learned that carers endorsed and embraced the opportunity to do more to keep their loved ones comfortable and at home. This is significant in making the case for wider access to the practice in the UK.
Patients with advanced cancer, their caregivers, and healthcare professionals can differ in their preferences for patient treatment and care. The objectives of this study were to (1) identify what healthcare professionals in specialist palliative care feel aids or challenges patients with advanced cancer and their caregivers to manage their discordance, and (2) decipher what is helpful or challenging for healthcare professionals themselves to manage discordance between patients with advanced cancer and their caregivers.
Methods
A qualitative study was conducted comprising online focus groups with 19 healthcare professionals from different professions in specialist palliative care. Participants were purposively and snowball sampled, and recruited from specialist palliative care settings, including hospital, hospice, and community-based care. The data were member checked and analyzed using thematic analysis.
Results
Trust and consistent communication between the patient, caregiver, and healthcare professional, were considered by participants as helpful for patients and caregivers to manage discordance. Emotional and psychological burden for both the patient and caregiver together with preexisting conflict between the patient and caregiver, were perceived as barriers for patients and caregivers to manage their discordance. Knowledge and expertise gained from practice combined with professional resilience and peer support enabled participants to help patients and caregivers navigate discordance. Relational conflict between the patient and caregiver combined with participants’ own uncertainty about ethical and legal connotations of helping the patient and caregiver resolve their differences, were barriers to helping the patient and caregiver manage their discordance.
Significance of results
Interventions focused on assisting patients with advanced cancer in palliative care and their caregivers manage their differences in decision-making could serve to alleviate emotional burden for both the patient and caregiver. Healthcare professionals in specialist palliative care value the perspective of both patients with advanced cancer and their caregivers when helping them manage their discordance in decision-making.
End-of-life dreams and visions (ELDVs) and delirium frequently occur near death but differ in core features. Clinical differentiation becomes challenging when they co-occur. This case report illustrates the interplay between ELDVs and delirium, examines the limits of current diagnostic criteria in mixed cases, and outlines a nuanced approach to distinction.
Methods
We report the case of an elderly Brazilian woman with metastatic cancer who exhibited both ELDVs and delirium. Mental status was serially assessed using the Confusion Assessment Method (CAM). ELDV accounts were prospectively triangulated across patient, family, and clinician reports to enhance reliability and contextual understanding.
Results
The patient’s experiences showed ELDV hallmarks – vivid, realistic encounters with deceased relatives, biographical relevance, and preparatory themes – yet many were affectively distressing and occurred alongside fluctuating attention and consciousness consistent with delirium. CAM effectively identified delirium but could not, on its own, distinguish ELDVs within delirious states. When co-occurring, ELDVs often emerged during “windows of lucidity” marked by preserved autobiographical context, intact recall with subsequent coherent narration, and insight, despite intense emotional valence. Distress alone was not discriminatory, probably being shaped by psychosocial and cultural factors. These observations indicate the need to supplement CAM with qualitative and phenomenological criteria, including content, vividness, biographical meaning, insight, cultural fit, and acuity/recall.
Significance
To our knowledge, this is the first case to map evolving end-of-life mental status using serial CAM while prospectively documenting ELDVs via triangulated reports. The findings highlight the complexity of differentiating co-occurring ELDVs and delirium and challenge the sufficiency of CAM alone. An integrated approach – combining CAM screening with structured ELDV assessment – may prevent misclassification and support holistic, dignified palliative care. As a single case in an underexplored domain, these insights require confirmation in larger, prospective studies to assess generalizability.
This study aims to examine the awareness, attitudes, and acceptability of medical aid in dying (MAiD) among healthcare professionals in Pakistan, a predominantly Muslim country where cultural and religious values heavily influence medical ethics and end-of-life decisions.
Methods
A cross-sectional survey was conducted online among 70 healthcare professionals, including physicians, nurses, and allied health workers in Pakistan. Data were collected via a structured, self-administered online questionnaire assessing knowledge, attitudes, and willingness to participate in MAiD-related actions. Descriptive and correlational analyses were conducted to identify patterns and associations.
Results
Participants demonstrated moderate knowledge about MAiD (M = 17.13, SD = 3.42) and moderate support for its legalization (M = 18.89, SD = 4.99). However, levels of negative attitudes (M = 32.21, SD = 6.11) and legal and ethical concerns (M = 24.73, SD = 3.66) were high. Behavioral willingness to engage in MAiD-related actions remained low (M = 2.42, SD = 3.38), with limited intent to assist (M = 0.39), refer (M = 0.64), or approve physician-assisted MAID (M = 0.81). A significant negative correlation emerged between knowledge and support for legalization (r = − .25, p = .037), while no significant associations were observed between knowledge and willingness to participate in MAiD. Gender and profession did not significantly influence attitudes or willingness.
Significance of results
While Pakistani healthcare professionals display a conceptual understanding of MAiD, their readiness to participate remains low, primarily due to ethical, legal, and religious concerns. These findings highlight the need for creating awareness regarding MAiD and for providing culturally sensitive education, structured training in palliative care, and the development of clear legal frameworks to guide end-of-life decision-making in Muslim-majority contexts.
Existential distress is a debilitating condition in end-of-life cancer patients. The Psycho-existential Symptom Assessment Scale (PeSAS) was developed to screen psycho-existential symptoms in palliative care, but limited research has examined its use. This study aimed to implement the Italian version of the PeSAS in palliative care services and to evaluate changes in healthcare providers’ (HCPs) competence after experiential training. It also aimed to estimate the frequency of psycho-existential symptoms and explore the scale structure using network analysis.
Methods
Two-hour experiential workshops were conducted in 5 Italian palliative care services by a clinical psychologist specialized in psycho-oncology and palliative care. Training covered psycho-existential distress, role-play, and feedback. Pre- and post-workshop questionnaires assessed clinicians’ self-efficacy in evaluating physical, psycho-existential, and suicidal symptoms, managing distress, and providing psychosocial support. Patient cross-sectional data were analyzed with descriptive statistics, t-tests, chi-square tests, and exploratory graph analysis.
Results
One hundred one clinicians from 3 services participated. Significant results were found in HCPs’ self-efficacy, with the largest effect in assessing suicidal symptoms (Cohen’s d = 0.54), followed by managing distress (d = 0.47) and evaluating psycho-existential symptoms (d = 0.40). Of 210 patients screened, 194 were included. PeSAS scores were strongly associated with Hopelessness (strength = 1.30) and depression (1.18), while being trapped by illness (−1.64) and wishing to die (−1.12) had weaker associations.
Significance of results
The Italian PeSAS is feasible for integration into palliative care. Strong associations highlight targets for interventions, while weaker associations suggest the need for additional approaches. PeSAS enhances HCPs’ ability to address the psycho-existential needs in end-of-life care.
Cancer patients may suffer negative consequences; however, they also report positive aspects of psychological adjustment, such as posttraumatic growth. One of the most widely used instruments for measuring this is the Posttraumatic Growth Inventory (PTGI).
Objectives
Cross-cultural adaptation and Mexican validation of the PTGI-X in the palliative oncology population.
Methods
A prospective cross-sectional study was conducted in 2 phases: the first involved translation and cross-cultural adaptation (expert judgment/piloting), and the second involved validation of the scale. In the latter, the sample comprised 236 advanced-stage oncology patients, and the following analyses were performed: 1) items under the classical test theory, 2) discrimination and internal consistency indices, 3) confirmatory factor analysis, and 4) convergent and divergent validity.
Results
Discrimination coefficients (pBis) ranging from 0.32 to 0.72 were obtained from the translated and adapted version. Cronbach’s alpha was 0.94. The 5-factor theoretical model was assumed; the confirmatory factor analysis yielded a scaled χ2 of 749.01 (df = 265; χ2/df = 2.83), CFI = 0.93, TLI = 0.93, RMSEA = 0.088, and SRMR = 0.065. Bivariate correlations were employed, showing moderate positive associations between the scale factors (r = 0.60 and 0.79) and low-magnitude positive correlations between the factors of posttraumatic growth and perception of quality of life (r = 0.14 and 0.18).
Significance of results
The PTGI-X-Mx showed satisfactory psychometric properties in patients with advanced oncological disease receiving palliative care.
There is a lack of family-based psychosocial support interventions in palliative care when a parent of children or youths has a life-threatening illness. One intervention that has shown positive effects is the family talk intervention (FTI). This study aimed to describe the influence of contextual factors on FTI sustainability, as perceived by healthcare professionals (HCPs), after a median of 18 months of implementation in clinical practice in cancer and palliative care when a parent of children or youths has a life-threatening illness.
Methods
Focus groups and individual interviews were conducted with 15 HCPs working with FTI. Data were analyzed using conventional qualitative content analysis.
Results
HCPs identified contextual factors that facilitated or hindered the use of FTI. The analysis resulted in 3 categories, Trying to prioritize FTI and coordinate families in a complex context is challenging, Working alone without FTI-educated colleagues hampers sustainability, the satisfaction of seeing families become stronger contributes to a receptiveness for change.
Significance of the results
This study shows that organizational support and resources, alongside the individual’s facilitating factors, such as receptiveness for change, are crucial for sustainability after the initial implementation. Witnessing a positive impact is motivational and also supports the sustainability of an intervention despite contextual constraints.
Patients with a life-threatening illness and their family caregivers are often affected by biopsychosocial factors that contribute to suffering and burden-sharing and affect quality-of-life.
Objectives
To compare anxiety and depression levels between patients with incurable cancer and caregivers, investigate the association between perceived burdensomeness and psychological outcomes over time, and evaluate factors associated with perceived burden.
Methods
Secondary analysis of a larger prospective, longitudinal study. Patients with incurable cancer and their family caregivers were interviewed every 3 months, from study enrollment to 12 months, to assess psychological factors. Anxiety and depression were measured with Hospital Anxiety and Depression Scale (HADS) and perceived of burden was assessed using distinct questions directed to patients and caregivers about feeling or perceiving caregiving as a burden. For the data analysis, generalized estimating equations were applied to assess the impact of patient and family caregiver related variables on HADS over time, considering anxiety and depression scores as binary variables.
Results
A total of 190 patient-family caregiver dyads were included. Anxiety was more frequent among family caregivers than patients across all follow-up moments. No significant difference was found in mean depression scores. Feeling like a burden to their family (32.6%) was significantly associated with higher anxiety [odds ratio (OR) = 4.45] and depression scores (OR = 2.73). Poor health perception increased the likelihood of anxiety and depression for patients (OR = 11.00; OR = 38.81) and FC (OR = 2.73; OR = 4.30). Family caregivers demonstrated higher psychological distress, with active employment reducing anxiety (OR = 0.54) and depression (OR = 0.43).
Significance of results
The perceived burden experienced by patients with advanced cancer and their family caregivers over time were factors relevant in the disease process. The feeling of being a burden and poor health perception were key factors contributing to psychological distress, underlining the need for specific interventions in palliative care.
Although prior research has identified common attributes of a Good Death across cultures, few studies have simultaneously incorporated the views of patients, family caregivers, and physicians – particularly in Latin America, where structural barriers to palliative care persist. This study examines how these stakeholders in Mexico perceive and designate what constitutes a Good Death, aiming to identify its core components and cultural particularities.
Methods
Qualitative interviews were conducted with 14 advanced-stage oncologic and nononcologic patients receiving home-based palliative care, 12 family caregivers, and 21 physicians. Data were analyzed using principles of generic purposive sampling and thematic analysis.
Results
The most frequent designation for a Good Death was “Dignified and Peaceful Death,” perceived as a multidimensional and multitemporal process. Five core domains emerged: physical, psychological, interpersonal, spiritual, and structural. These dimensions manifested across distinct phases – before death (as preparation), during death, and after death.
Significance of results
A Dignified and Peaceful Death begins when individuals become aware of their mortality and encompasses cultural, emotional, and structural elements that transcend physical death. This perspective suggests that end-of-life care should respond not only to biomedical needs but also to broader existential and relational dimensions that shape patient and family experiences in resource-limited settings.
Futile treatment is defined as maintenance of organ function without achieving meaningful goals of care. Poland is characterized by low prevalence of introducing limitations of treatment in intensive care units (ICUs). The aim of the study was to conduct a questionnaire study to evaluate the approach of Polish medical personnel to futile treatment in the ICUs.
Materials and Methods
We conducted an anonymous questionnaire study during a national intensive care conference in April 2023. We collected data on participants’ experiences with limiting futile treatment and their demographics. Statistical analysis comparing the responses between respondents with shorter (less than 10 years) or longer (10 years or more) work experience was conducted with a chi-squared test with residual analysis and Bonferroni correction.
Results
354 respondents completed the questionnaire. Most participants (94.5%) found discussing end-of-life care with patients important. Additionally, 81.6% believed that the medical personnel should be more decisive than the patient’s family regarding end-of-life care decisions. While 81% were aware of the existence of futile treatment protocol, only 35% used it regularly. Fear of legal consequences (61.9%) or family’s reaction (55.6%) were the most common reasons for not adhering to existing guidelines. Improving hospital procedures (83.6%) and proper legislation (67.2%) were commonly suggested measures to improve end-of-life care. Respondents with shorter work experience more often reported no awareness of futile treatment protocol (28.7% vs. 6.9%, p < 0.001) as well as no experience discussing treatment limitations with patients (24.6% vs. 8.2%, p < 0.001) or their families (20.0% vs. 3.8%) compared to the clinicians with longer work experience.
Significance of results
Despite widespread recognition of the unethical nature of futile treatment, it remains controversial among Polish ICU clinicians. Improvement of legislation and hospital procedures could contribute to improvement of clinicians’ and patients’ well-being when facing end-of-life care decisions.
Persons living with dementia (PLWD) and their caregivers (CG) face a complex disease trajectory, which includes a multitude of challenges related to identifying credible health resources, access to services, and securing emotional support. Scalable, sustainable interventions that guide recently diagnosed PLWD and CG are desperately needed to minimize unnecessary burden and improve quality of life. This article describes the feasibility and acceptability of an early virtual palliative care intervention (SUPPORT-DTM) for use among PLWD with mild Cognitive Impairment or Alzheimer’s disease and their CG.
Methods
Using a quasi-experimental design, this 6-week prospective feasibility study was conducted among 28 (PLWD/CG) dyads and 2 individual CG. Eligibility criteria for PLWD included those with mild cognitive impairment (FAST score ≥4). SUPPORT-DTM comprises 4 main areas of guided support: 1) understanding the disease, 2) caring for myself, 3) caring for the caregiver, and 4) planning for the future. Outcome data were collected pre/post and during the intervention. Semi-structured interviews were conducted post intervention with 10 dyads. This study was approved by the Medical University of South Carolina IRB and data were collected from January 2023 to March 2024.
Results
Seventy-six percent (23/30) of enrolled dyads successfully completed the study. PLWD and CG scores on validated measures of acceptability, appropriateness, and feasibility indicated SUPPORT-DTM was acceptable, appropriate, and feasible. Post-intervention interview feedback further evidenced the acceptability, appropriateness, and feasibility of SUPPORT-DTM.
Significance of results
Delivery of this virtual nurse-led early palliative care intervention (a Program of SUPPORT-DTM) was feasible for both PLWD and their CGs. A Program of SUPPORT-DTM has potential as a feasible intervention to provide anticipatory guidance to community-dwelling PLWD and CG. Participants endorsed inclusion of additional content specific to physical activity, stress management, and social support as helpful refinements for future delivery.