Individuals with Parkinson’s disease (PD) often experience delays in initiating advance care planning (ACP) and palliative care (PC) which can impact their autonomy as cognitive function declines. Because patient autonomy and decision-making in ACP and PC for individuals with PD is insufficiently explored, this systematic review with narrative synthesis aims to fill this gap by reviewing the existing literature on these topics. It examines how awareness and timing influences ACP and PC implementation, how illness narratives shape decision-making and autonomy perceptions and the roles of caregivers and neurologists in supporting patient autonomy.

We conducted a systematic review with narrative synthesis of original research investigating ACP and PC in individuals with PD in accordance with PRISMA guidelines. The methodological quality of included studies was assessed using the Critical Appraisal Skills Programme checklists. Illness narrative types were categorized according to Arthur W. Frank’s framework (chaos, restitution and quest narratives). Findings were synthesized narratively and organized thematically in line with the review objectives.

We included 42 studies using quantitative and qualitative methodologies involving 4154 individuals with PD and 2191 caregivers. Several themes were identified. Limited knowledge of ACP and PC explained its lower occurrence. ACP is often delayed due to uncertainty and misconceptions leading to late or crisis-driven discussions. Narrative medicine shows most individuals with PD share chaos narratives reflecting a focus on motor symptoms over autonomy. Lastly, individuals with PD expressed a need for greater autonomy support while ACP counseling is well received and improves understanding of care needs and end-of-life decisions.

Delays in initiating ACP and PC are associated with diminished autonomy in individuals with PD. Narrative medicine could help neurologists start ACP and PC discussions earlier, supporting autonomy and thereby aligning care with patient preferences.

The growing demand for palliative care (PC) services and the need for standardized approaches to patient identification highlight the importance of having validated tools available in Brazilian Portuguese. The absence of culturally adapted instruments may hinder appropriate patient assessment, delay referral to PC services, and ultimately compromise the quality of care delivered. This study aims to translate and adapt the Identification des patients nécessitant des soins PALLiatifs généraux et spécialisés (ID-PALL©) instrument into Brazilian Portuguese.

Herdman’s recommendations were followed, which include conceptual, item, and semantic validation stages. After authorization from the ID-PALL© developers, the translation, synthesis of the translated versions, and back-translation of the instrument were performed. Subsequently, a committee of 11 experts evaluated the semantic, idiomatic, conceptual, and cultural equivalence between the versions, resulting in the development of the pre-final version. To validate the instrument’s content, this version was pre-tested (n = 30) with the participation of physicians and nurses. For statistical analyses, the content validity coefficient (CVC) was calculated.

The cross-cultural adaptation demonstrated the suitability of the translated versions after semantic and cultural adjustments. The pre-final version showed satisfactory comprehension and semantic (CVC), idiomatic (CVC), conceptual (CVC), and cultural (CVC) equivalence, which enabled the development of the final version, named IDPALL-BR. The data obtained in the pre-test demonstrated content validity among the target audience, with a CVC = 0.909.

The Brazilian Portuguese version of this instrument has semantic validity and, therefore, shows potential for screening general and specialized PC needs.

Advanced pancreatic and gastric cancers are associated with high symptom burden and psychological distress, potentially threatening patients’ sense of dignity. Although Dignity Therapy (DT) has mainly been used in end-of-life care, its potential role earlier in the disease trajectory is emerging. This exploratory study investigated the feasibility and potential impact of DT during active chemotherapy on emotional distress, dignity-related distress, and quality of life (QoL).

Thirty patients with advanced pancreatic or gastric cancer undergoing chemotherapy received a 3-session DT intervention over approximately 3 weeks. Emotional distress, dignity-related distress, and QoL were assessed at baseline (T0), post-intervention (T1), and 1-month follow-up (T2) using the Distress Thermometer, Patient Dignity Inventory, and EORTC Quality of Life Questionnaire-Core 30. Exploratory analyses assessed changes over time.

Emotional distress decreased significantly from T0 (M = 6.67, SD = 1.47) to T1 (M = 3.13, SD = 1.43; p < .001) and remained lower at T2 (M = 3.50, SD = 1.53; p < .001). Dignity-related distress also decreased from T0 (M = 37.1, SD = 3.03) to T1 (M = 27.9, SD = 1.79; p < .001), with sustained improvement at T2 (M = 25.4, SD = 12.86; p < .01). QoL remained stable. Participants reported high acceptability of the intervention.

DT during chemotherapy appears feasible and may improve emotional and dignity-related outcomes. Results should be interpreted cautiously due to the small sample size, attrition, and lack of a control group.

Individuals living with advanced pancreatic cancer (APC) face a poor prognosis and high symptom burden. Although exercise training is an evidence-based approach in improving physical and psychological health outcomes in those living with and beyond a cancer diagnosis, there is limited research exploring its role and integration within advanced pancreatic care. The aim of this study was to explore the exercise experiences and perspectives of individuals living with APC in Canada.

Using a qualitative interpretive description methodology, we conducted semi-structured interviews with 6 individuals diagnosed with advanced (stage III or IV) exocrine pancreatic cancer from across Canada. Interviews were transcribed verbatim, and transcripts were analyzed using reflexive thematic analysis. Inductive and deductive analysis was conducted using the Behaviour Change Wheel and Theoretical Domains Framework as guiding lenses.

Three themes were identified impacting how individuals living with APC perceive and experience exercise: (1) Taking control of my journey; (2) Building the motivation; and (3) If it was a program for me.

This study highlights aspects of the perception of exercise in pancreatic cancer care among individuals living with advanced disease in Canada. Integration of progressive programming, realistic goal setting, and fostering of a supportive environment were identified as important considerations for the care context.

End-of-life care for persons living with dementia in home hospice relies heavily on coordination between family care partners (FCPs) and clinicians (e.g., hospice social workers and nurses). FCPs and clinicians have reported support and knowledge gaps in end-of-life dementia care. Interventions are needed to improve FCPs’ support and clinicians’ educational gaps.

A pilot randomized controlled trial was designed to examine implementation outcomes for a dementia-focused end-of-life intervention for FCPs (n = 37) and clinicians (n = 15). Data on survey completion and acceptability were collected at baseline, during 4 follow-up visits, and at the conclusion of the study.

Twenty-eight (75%) caregivers completed the post-study survey, and 10 (27%) reported using the structured worksheet. Thirteen (87%) clinicians completed the post-training survey, 8 (53%) completed the post-study survey, and 8 (100%) used the worksheet. Clinicians (n = 8) were satisfied or highly satisfied with the instructional videos, and half (50%) used the information frequently with patients. Both groups reported the worksheet helpful, easy to use, and satisfactory, though clinicians rated helpfulness slightly higher (mean = 3.88 vs. 3.70 for FCPs). Clinicians liked the worksheet’s structured guidance and the enhanced collaboration.

This study provides preliminary evidence for implementation outcomes of a dementia-focused end-of-life intervention in home hospice. Findings suggest the intervention can be implemented in a hospice setting, with moderate worksheet uptake and perceived value among FCPs and clinicians.

Women with cancer who live in medically underserved areas could benefit from behavioral pain interventions, but access is limited. A randomized trial reported that a 4-session virtual program incorporating pain coping skills training (mPCST) was effective in improving pain outcomes compared to an attention-control condition. We performed a cost-effectiveness analysis of mPCST vs. control.

Data on medical resource use, therapist time, and participants’ attendance at intervention sessions and time associated with travel and using a mobile app were collected. The 5-level EuroQol 5-Dimension (EQ-5D-5L), a preference-weighted measure of health-related quality of life (HRQOL), was administered at baseline, after the intervention period, and 3 and 6 months later. Medicare payments were used to value medical resource use and therapist time to deliver mPCST. Patient time was valued using the average US wage.

Medical resource utilization was similar for both groups, but hospitalizations trended higher in the mPCST group. EQ-5D-5L preference weights were higher by an average of 0.066 (p = 0.04) with mPCST across the follow-up period, representing an incremental gain of 0.04 quality-adjusted life years (QALYs) (95% CI: 0.00–0.08). When including the base-case cost of mPCST of \$500 vs. \$0 for the control group, the incremental cost-effectiveness ratio (ICER) was \$12,725 per QALY (95% CI: 5,566–69,343). Including the value of patient time added \$303 to mPCST costs resulting in an ICER of \$20,438 per QALY (95% CI: 9,051–111,403).

mPCST is a cost-effective program that improves HRQOL for women with cancer living in medically underserved areas.

This study examined the associations among supportive care needs, perceived social support, and quality of life among family caregivers of patients with advanced cancer and explored caregivers’ lived experiences of the caregiving process.

A convergent mixed-methods study was conducted at a university oncology center in Türkiye. Quantitative data were collected from 328 family caregivers of patients with advanced cancer using the Supportive Care Needs Survey–Caregivers (SCNS-C), the Multidimensional Scale of Perceived Social Support (MSPSS), and the SF-12 Health Survey. Qualitative data were obtained through semi-structured interviews with 22 caregivers and analyzed using Colaizzi’s phenomenological approach.

Higher supportive care needs were significantly associated with poorer physical and mental quality of life, whereas higher perceived social support was significantly associated with better quality of life. Supportive care needs demonstrated negative correlations with both physical and mental health-related quality of life, while perceived social support demonstrated positive correlations with these outcomes (all p < .05).

Impacts of the Caregiving Process and Emotional and Psychological Dimensions of Caregiving. Caregivers described disruptions in family and social life, financial strain, unmet support needs, emotional distress, reliance on family and community support, religious coping, and fluctuating feelings of hope and despair.

The findings suggest that supportive care needs and perceived social support are associated with caregiver well-being. Integrating caregiver assessment, psychosocial support, and interventions into palliative care services may help address unmet needs and improve quality of life among caregivers of advanced cancer patients.

The aim of this study was to examine how Swiss palliative care (PC) clinicians learn key communication skills, their perceived proficiency and comfort, and how often they perform different communication tasks.

Between October and November 2021, we surveyed Swiss PC clinicians on 22 communication tasks via an online survey.

Of 242 respondents, 231 provided complete data. Participants were mostly nurses (64%), female (79%), and on average 50 years old. Most reported learning communication through practice (89%) or observation (70%). Overall, perceived proficiency was moderate to high and slightly higher than comfort, but both varied considerably across tasks. Highest scores were for explaining PC and discussing physical symptoms, while lowest were for addressing spirituality and supporting patients who are parents in communicating with their children. Training showed moderate positive associations with perceived proficiency and comfort, though some tasks (e.g., prognosis, spirituality, and dying phase) were unrelated to training. Perceived proficiency and comfort were strongly correlated and both increased with experience. Physicians reported higher scores in illness-related discussions, whereas nurses reported more training in emotional and spiritual communication.

PC clinicians showed strong communication competence, but gaps remain in emotionally complex areas. Integrating technical, emotional, spiritual and family-centered communication training into core curricula may enhance care quality, and clinicians’ confidence and satisfaction. Strengthening experiential learning, reflective practice, and skills for managing emotionally demanding conversations may improve clinicians’ comfort and preparedness. Tailored training for nurses and physicians could optimize communication quality and support sustainable PC practice.

To investigate the relationship between pain (including neuropathic pain [NP]), functional impairment, and anxiety/depression among Nigerian cancer patients.

This cross-sectional study enrolled 126 adult cancer patients at a Nigerian teaching hospital. Pain intensity, NP (painDETECT), functional impairment (Sheehan Disability Scale), and anxiety/depression (Hospital Anxiety and Depression Scale, HADS) were assessed.

Prevalence rates were 37.3% for anxiety and 35.7% for depression. Pain was reported by 82% of patients (predominantly mild), while NP occurred in 23%. Bivariate and correlation analyses showed no significant association between pain (including NP) and anxiety/depression (p > 0.05). However, functional impairment was strongly correlated with both outcomes (HADS-A: r = 0.470; HADS-D: r = 0.675; p < 0.001). Multivariate regression identified functional impairment as the strongest independent predictor of anxiety (odds ratio [OR] = 7.537) and depression (OR = 8.625). Pain intensity and NP were not retained as significant predictors.

Functional impairment, not pain nor NP, independently predicts anxiety and depression in Nigerian cancer patients. Routine functional screening may be more clinically useful than pain-focused assessments for identifying psychological distress in resource-limited oncology settings.