People with high-grade brain tumours are frequently excluded from qualitative research due to assumptions regarding cognitive capacity, prognosis, and the complexity of symptoms such as fatigue and communication difficulties. Yet their perspectives are vital to understanding the lived experience of advanced neurological illness and to informing person-centred palliative care. This paper outlines key ethical and practical considerations for involving individuals with high-grade brain tumours in qualitative research. It discusses issues of consent, timing, communication, and researcher sensitivity to fluctuating capacity, highlighting the importance of flexibility and preparation. Strategies for adapting interview methods, supporting participant wellbeing, and maintaining ethical rigour are explored. The paper argues that with thoughtful design and clear ethical safeguards, the participation of people with high-grade brain tumours in qualitative research is both feasible and essential. Enabling their voices to be heard can enhance the quality, inclusivity, and humanity of palliative and supportive care research.
Emergency ambulance personnel are commonly the last health professionals to care for people in the moments before death and the first to provide families with bereavement care, particularly when death is sudden or unexpected. Despite this, paramedic training seldom discusses, simulates or assesses termination of resuscitation, or breaking bad news to family. This paper describes paramedicine students' experiences of a dedicated learning module designed to prepare them for patient death and caring for bereaved families. A lecture, small-group case studies and actor-led simulations were embedded into paramedic degree students' final year of study. Students shared their perspectives on learning about death, dying, and bereavement through focus groups or an online survey. Students found talking about death and supporting acute grief unfamiliar and uncomfortable. Eager to provide reassurance in a crisis, many expressed ongoing concerns about saying the wrong thing. Participants wanted greater integration of challenging communication and cultural responsiveness throughout their degree, noting opportunities for learning during clinical placements were precious but limited. Actor-led simulation of patient death and family grief presented an important but unfamiliar divergence from standardized, action-packed resuscitation scenarios. Greater acknowledgement of death, dying and bereavement throughout training could better prepare paramedics for the realities of emergency ambulance work.
Electronic Palliative Care Coordination Systems (EPaCCS) were developed to improve information-sharing and coordination for people approaching the end of life. Despite longstanding policy support, uptake across England remains highly variable, and their real-world impact is uncertain. This realist mixed-methods study evaluated the introduction of an EPaCCS within one clinical commissioning group (CCG) area, combining stakeholder focus groups, healthcare professional interviews, patient and carer interviews, and cross-sectional analysis of 1723 deaths across general practices. Our findings show that the EPaCCS did not embed into routine practice due to limited consultation during commissioning, inconsistent leadership, poor interoperability, unclear purpose, and minimal perceived added value for clinicians with access to comprehensive electronic health records. New national evidence highlights similar concerns around digital advance care planning (DACP), with persistent gaps in engagement, workflow alignment and system interoperability. Our refined programme theory indicates that successful EPaCCS implementation requires clear communication of purpose, multidisciplinary editing rights, shared digital infrastructure, stakeholder ownership, and ongoing evaluation. Lessons remain highly relevant as integrated care systems continue to expand DACP initiatives and adopt shared care records nationwide.
Background and AimAdolescents and young adults (AYAs) with advanced cancer experience significant physical, psychological, and existential distress, often compounded by developmental challenges. In low-and middle-income countries, there is a paucity of contextually relevant, low-cost psychosocial interventions within palliative care. Journaling has shown promise in improving emotional well-being but remains underexplored in this population. We aim to evaluate the effectiveness of guided journaling on person-centered outcomes among AYAs receiving specialist palliative care (SPC) and to explore their experiences with journaling.MethodsWRITE-in-AYAs is a phase 3, non-blinded, mixed-methods randomized controlled trial from a tertiary care centre in India. AYAs with advanced cancer will be randomized (1:1) to guided journaling plus usual SPC or usual SPC alone. The intervention will include guided journaling over four weeks. The primary outcome will be the change in quality of life, measured using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being at day 7. Secondary outcomes will include changes in quality of life at one month and psychological distress, measured using the Hospital Anxiety and Depression Scale at day 7 and one month. Qualitative findings will explore perceived benefits, challenges, and meaning-making associated with journaling. Qualitative data will be obtained through semi-structured interviews and analysed thematically.DiscussionThis study will generate contextually relevant evidence from quantitative data and AYAs' lived experiences to inform a scalable, low-cost psychosocial intervention. This will inform patient-centred psychosocial care specific to AYAs receiving palliative care in resource-constrained settings.
Context: Cancer pain affects approximately 50% of patients with cancer, significantly reducing quality of life. Opioids remain first line for treatment however many patients report inadequate pain relief or intolerable side effects. Recently cannabis-based medicinal products (CBMPs) have become increasingly promising but are marred by low-quality evidence. Objectives: To evaluate the effectiveness and safety of CBMPs in treating cancer pain using data from the UK Medical Cannabis Registry.Methods116 patients were followed in a prospective observational study. Patient-reported outcome measures (PROMs), comprising of pain-specific and general measures of health-related quality of life, were collected at baseline, 1, 3, 6, 12, 18 and 24 month intervals. Adverse events were graded using the Common Terminology Criteria for Adverse Events. Longitudinal changes were evaluated using repeated-measures analysis of variance with Bonferroni-corrected post-hoc pairwise comparisons. Results: improvements were observed across all PROMs (p < 0.050). At 24 months, clinically meaningful improvements (MCID) were achieved by 50.00% (n = 58), 47.41% (n = 5), and 54.31% (n = 63) of patients for Pain VAS, BPI-Severity, and BPI-Interference, respectively. EQ-5D-5L index value improved from 0.38 +/- 0.36 at baseline to 0.62 +/- 0.26 at 24 months (p < 0.001). Fifty-five adverse events were reported by five patients (4.31%), of which 78.18% (n = 43) were mild-to-moderate in severity; no life-threatening or fatal events occurred. Conclusion: This study highlights the potential of CBMPs as an alternative to opioid treatment. Though this study builds on the limited body of evidence through strong external validity, future clinical trials is still required to conclusively determine the efficacy of CBMPs.
Many people who are bereaved would benefit from effective bereavement support, yet timely access to this is limited. We developed My Grief My Way, a prototype online bereavement support resource based on Acceptance and Commitment Therapy, to facilitate access to evidence-based bereavement support, irrespective of geography or time. We sought to explore the acceptability of My Grief My Way for people who have been bereaved. We conducted a convergent mixed-methods study involving online interviews with bereaved individuals and questionnaires administered at baseline and approximately 8 weeks after accessing the My Grief My Way website. Participants were 27 bereaved individuals (23 female) recruited from two not-for-profit organisations providing bereavement support in the UK. Mean age was 51 years (range 23-77). Most participants perceived the website as acceptable (user-friendly, flexible, attractive and varied), and a positive experience (supportive and caring, provided a sense of community, helped develop coping skills). Exploratory quantitative analysis suggested improvements in participant mental wellbeing over time. Most who used the website said they would access it again in the future (72%). Our preliminary findings suggest that My Grief My Way is acceptable to bereaved individuals and may be associated with improvements in mental wellbeing. It has the potential to increase access to evidence-based bereavement support in a timely manner. Further research is needed to evaluate impacts in a larger, more diverse, sample.
Logic models are simplified graphics that guide the development and evaluation of complex interventions. This paper describes a logic model for an online intervention to improve coping and quality of life after bereavement. A combination approach to intervention development was used. Evidence was synthesized in iterative cycles from: (i) research literature; (ii) interviews with therapists; (iii) workshops with bereaved people; (iv) workshops with bereavement support professionals; and (v) expertise of the research team. The logic model illustrated the links between: risk factors for and indicators of grief support needs, contextual considerations for online interventions, intervention components, change mechanisms, short and long term intended outcomes at the individual and organizational level, as well as broader impacts. The logic model guided the intervention development process, fostering collaboration and synthesis of multiple sources. The description of the process will be useful to other intervention developers.
Antibiotic prescribing remains common in terminally ill patients despite limited evidence of benefit. This study investigates the prevalence, clinical outcomes, and cost implications of antibiotic use in end-of-life patients receiving inpatient palliative care. A retrospective cross-sectional study was conducted, reviewing the medical records of 155 end-of-life patients who received palliative care consultations and died between January 1, 2021, and December 31, 2021. Of the 155 patients, 69.68% were diagnosed with cancer, and 94.84% had documented advance care planning. Antibiotics were prescribed in 83.23% of cases, with 71.61% continuing use during the last seven days of life. Respiratory (41.94%) and urinary tract infections (20.65%) were the most frequently identified infection sites, and Klebsiella pneumoniae (16.77%) was the most commonly identified pathogen. Fever was the most common symptom (69.03%) and showed the highest response rate to antibiotics (69.23%), whereas dyspnoea demonstrated limited improvement (13.92%). Gastrointestinal disturbances were the most reported adverse drug reactions (4.52%). The median total cost of antibiotic prescriptions and related care was 16,132.63 THB (IQR: 7,427.15-74,740.39 THB), equivalent to 1,203.93 international dollars (IQR: 554.26-5,577.64). These findings highlight the frequent use of antibiotics in terminally ill patients, often extending to the final days of life, with considerable economic impact. Given the limited symptomatic benefit and high costs, these results emphasise the need to re-evaluate antibiotic prescribing practices in end-of-life care to align with patient-centred goals and cost-effective strategies.
Designating a surrogate decision-maker and discussing end-of-life preferences are essential steps to prepare for a potential future loss of decision-making capacity. Yet, little is known about the factors associated with better surrogate understanding of a person's end-of-life preferences. We aimed to examine which sociodemographic factors, values related to end-of-life care, and decision-making-related factors were associated with perceived surrogate understanding of end-of-life preferences among adults who had designated a surrogate. This cross-sectional study entailed a secondary analysis of data from the Public Awareness of Hospice and Palliative Care Study 2018, a nationwide, web-based survey conducted in Japan. The survey included 1000 adults aged 20-79 who were registered with a market research company. Participants were asked to evaluate the extent to which their designated surrogate understood their end-of-life care preferences. The participants had a mean age of 50.3 years (SD = 15.7), and 51% were female. Among the 873 participants who had designated a surrogate, 57.4% had never discussed their end-of-life preferences with that person. Only 19.9% (n = 174) believed that their surrogate understood their preferences sufficiently. Perceived surrogate understanding was associated with several factors, including age, living status, preferences regarding diagnostic disclosure to family, preferences for end-of-life treatment goals, and the extent of prior end-of-life discussion. The results emphasize the value of end-of-life discussions and the influence of individual characteristics on perceived surrogate understanding.
BackgroundPolicy and employment legislation are key for supporting employed end of life family caregivers. The Canadian Compassionate Care Benefit is one example of a benefit which supports employed family carers, but the potential transferability of the Benefit to other countries has not been explored.AimThe aim of this study was to explore the implementation and impact of the Canadian Compassionate Care Benefit and assess its potential transferability to comparable countries.MethodsA multi-method design was used, incorporating an integrative review of published literature and qualitative interviews with stakeholders who had expertise with the Compassionate Care Benefit, from across Canada. The findings from the two phases were analysed separately and were integrated at the stage of interpretation.ResultsFourteen interviews were conducted with stakeholders, and sixteen relevant articles were identified from the integrative review. Whilst the CCB was viewed as an important support for carers, problems were highlighted which would need to be addressed to improve access and ensure equity in other countries or settings. The results highlight the importance of a receptive socio-political landscape in driving policy change, noting political incentives and individual champions as key for negotiating policy prioritization. The lack of evidence on cost-effectiveness may impede international transferability or policy expansion.ConclusionWhilst the Compassionate Care Benefit has been conceived and implemented specifically for the Canadian context, there may be potential for it to be adapted for other comparable countries. Further research on the Compassionate Care Benefit, particularly around cost-effectiveness, would support international policy transfer.
RationaleThere is a lack of knowledge on symptoms and problems among non-cancer patients with life-threatening disease and how they differ from symptoms and problems experienced by cancer patients. It is important to use Patient Reported Outcome Measures (PROM) to get the patients' own experience of their symptoms and problems because clinicians may overlook symptoms.Aim and ObjectivesTo compare symptoms and problems reported on the PROM - questionnaire 'PRO-Pall' by patients with life-threatening cancer to patients with life-threatening kidney-, heart - and lung diseases.MethodThe PRO-Pall data was gathered in real world practice by health professionals and it was used outside specialist palliative care among patients with life-threatening kidney-, heart-, lung, and cancer disease in three municipalities, three general practices, a research clinic, and eight hospital departments. Multivariate logistic regression assessed the odds ratio of symptoms and problems for non-cancer patients compared to cancer patients, adjusted for age and gender.ResultsThe study included 310 patients (8% kidney, 14% heart, 41% lung, 37% cancer,) with a mean age of 70.3 years. The initial results indicated that non-cancer patients had less severe physical symptoms, better emotional functioning, and better quality of life compared to cancer patients.ConclusionThe study offers initial insights into the symptoms and problems experienced by patients with life-threatening kidney, heart, lung, and cancer diseases. The initial results showed that cancer patients experienced more severe levels of various symptoms and problems compared to patients with life-threatening lung, heart, and kidney diseases.
The purpose of this retrospective study is to examine the impact of a rehabilitation and blood pressure monitoring training program for community health workers in a resource-limited setting over a 10-year period. Participants were home-based palliative care community health workers at St. Gabriel's Hospital in rural Malawi (n = 139). Data were collected from knowledge tests, skill competency tests, observations of skills in the home setting, and surveys of the community health workers. Descriptive and comparative statistical methods were used to analyze the results. Over the 10 years of training, attendance exceeded 90%. Participants demonstrated a significant increase in knowledge between the post-test and pretest in 9 of the 10 years of annual training (overall p < 0.001). 100% of the participants exhibited competency in all skills across all 10 years of training (averaging 14-5 skills per year). The community health workers reported that the acquired rehabilitation skills benefited the patient, the caregiver, and themselves (> 85% 'some' or 'a lot'). Through a collaborative partnership approach, our study highlights the potential for a community health worker rehabilitation and preventive care training program to build capacity and sustain over a decade.
Aim:The aim of the present study was to translate, culturally adapt, and analyze the psychometric properties of the Demoralization Scale (DS) for the Brazilian context.Methods:This was a cross-sectional study, carried out from May 2022 to October 2023, in two stages, namely: (1) translation and cultural adaptation of the DS; and (2) evaluation of the preliminary psychometric properties of the Brazilian version of the DS (DS-BR). The European Organization for Research and Treatment of Cancer - Quality of Life Group Translation Procedure protocol was used for the translation and cultural adaptation process. Principal Component Analysis was used to assess the scale's dimensionality. The reliability of the extracted factors was assessed through Cronbach's alpha coefficients.Results:In a cohort of 171 patients with cancer, validity was demonstrated based on content and internal structure, with three factors: disheartenment & loss of meaning (alpha = 0.78), sense of failure and coping (alpha = 0.72), and self-esteem with dysphoria (alpha = 0.55). The DS-BR showed concurrent validity with the mini-MAC and FACIT-Sp.Conclusion:This body of evidence indicates the pertinence of using the instrument in Brazil and prompts new studies to be carried out with the DS-BR in order to follow-up on the process of validating this measurement instrument.
General practitioners (GPs) play a central role in the delivery of palliative care. Many GPs desire to improve their palliative care skills. Education resources, such as electronic resources (e-resources), that are easily accessible and validated for local use, are one recommended clinical learning tool. This observational, cross-sectional questionnaire study (1 July to 30 September 2022) aimed to investigate the frequency of use and perceived usefulness of palliative care e-resources by Australian rural GPs. Forty-seven GPs and GP registrars in southern NSW, Australia were invited to participate, with 44 questionnaires distributed; 35 were returned (response rate 80%). Thirty-three (94%) of respondents preferred electronic vs print-based resources and 27 (77%) used e-resources daily in their general clinical practice. Therapeutic Guidelines - Palliative Care was the most well-known and frequently used palliative care e-resource (86%, n = 30; 66%, n = 23) followed by Opioid Calculator (74%, n = 26; 66%, n = 23) and HealthPathways (71%, n = 25; 31%, n = 11). The remaining palliative care e-resources were largely unknown and underutilised. Barriers to use included GPs finding them difficult to use (49%, n = 17) or access (40%, n = 14), being unaware of available e-resources (40%, n = 14) and there being too many e-resources (29%, n = 10). This study suggests that rural GPs are unaware of and do not use most palliative care e-resources, and instead use palliative care sections/volumes within familiar general medical e-resources. Rather than continuing to develop a wide range of e-resources for GPs, efforts may be better placed by improving access and efficiency for time-poor GPs, such as centralising e-resources to one website.
