BackgroundPerforming clinical trials in palliative cancer care is known to be challenging.ObjectiveThis study aimed to explore how patients with advanced cancer experienced their participation in a randomised, placebo-controlled trial while receiving palliative cancer care at end of life.MethodA descriptive design with a qualitative approach was used. 14 patients who had participated in the ‘Palliative-D’ study were interviewed. Data were analysed using content analysis.ResultsThree categories were identified understanding the study design, willingness to participate and collaboration with the research team alongside standard care. Being randomised, with the risk of receiving placebo, was perceived as non-problematic since it was understood as being important for the quality of the research. Patients showed a willingness to participate for the sake of others and also for their own sake, hoping for a cure or at least to live as long as possible. Patients felt proud of being useful and contributing to research. Consent to participate was made autonomously without discussing with others. Patients considered the study design uncomplicated and well-integrated into the standard care.ConclusionStudy participation in a randomised, placebo-controlled trial can be a positive and meaningful experience for patients despite advanced cancer in end of life. Participation may support patients’ autonomy and give hope, and therefore, might have a positive effect on quality of life. A carefully planned and simple study design, well integrated into standard care, can facilitate the feasibility of clinical studies in specialised palliative home care.

ObjectivesThis study examines trends in advance care planning (ACP) awareness, engagement, attitude and experiences among the public in British Columbia (BC), Canada, from 2012 to 2020. This time period is of relevance as it includes provincial education initiatives. We also explored demographic characteristics associated with lower ACP awareness and engagement, to inform future initiatives.MethodsLongitudinal data from two provincial polls in 2016 and 2020, along with BC-specific data extracted from a national poll in 2012, were analysed to investigate ACP awareness, engagement and attitudes. Demographic characteristics associated with ACP were examined using binomial and ordinal logistic regression.ResultsWe observed an increase in awareness of ACP between 2012 and 2020 (from 15.2% to 32.9%). A significant rise in engagement was also observed, with more respondents reporting ACP conversations with healthcare providers between 2016 and 2020 (8.8%–14%) and documenting their healthcare wishes since 2012 (11.6%–28.0%). Demographic analysis revealed that older, female and more educated individuals were more likely to participate in ACP activities.ConclusionsThis study highlights positive trends in ACP awareness and engagement in BC over the study period. Despite lower rates in some variables, the observed increases suggest increasing awareness over time, with potential for further improvement. However, disparities persist among different demographic groups, highlighting the need for targeted efforts to improve ACP knowledge and participation, especially among younger adults, males, single individuals and those with lower education levels.

BackgroundSocial media with real-time content and a wide-reaching user network opens up more possibilities for palliative and end-of-life care (PEoLC) researchers who have begun to embrace it as a complementary research tool. This review aims to identify the uses of social media in PEoLC studies and to examine the ethical considerations and data collection approaches raised by this research approach.MethodsNine online databases were searched for PEoLC research using social media published before December 2022. Thematic analysis and narrative synthesis approach were used to categorise social media applications.Results21 studies were included. 16 studies used social media to conduct secondary analysis and five studies used social media as a platform for information sharing. Ethical considerations relevant to social media studies varied while 15 studies discussed ethical considerations, only 6 studies obtained ethical approval and 5 studies confirmed participant consent. Among studies that used social media data, most of them manually collected social media data, and other studies relied on Twitter application programming interface or third-party analytical tools. A total of 1 520 329 posts, 325 videos and 33 articles related to PEoLC from 2008 to 2022 were collected and analysed.ConclusionsSocial media has emerged as a promising complementary research tool with demonstrated feasibility in various applications. However, we identified the absence of standardised ethical handling and data collection approaches which pose an ongoing challenge. We provided practical recommendations to bridge these pressing gaps for researchers wishing to use social media in future PEoLC-related studies.

BackgroundPrecise prognostic information, if available, is very helpful for guiding treatment decisions and resource allocation in patients with non-cancer non-communicable chronic diseases (NCDs). This study aimed to systematically review the existing evidence, examining prognostic models and factors for identifying end-of-life non-cancer NCD patients.MethodsElectronic databases, including Medline, Embase, CINAHL, Cochrane Library, PsychINFO and other sources, were searched from the inception of these databases up until June 2023. Studies published in English with findings mentioning prognostic models or factors related to identifying end-of-life in non-cancer NCD patients were included. The quality of studies was assessed using the Quality in Prognosis Studies tool.ResultsThe analysis included data from 41 studies, with 16 focusing on chronic obstructive pulmonary diseases (COPD), 10 on dementia, 6 on heart failure and 9 on mixed NCDs. Traditional statistical modelling was predominantly used for the identified prognostic models. Common predictors in COPD models included dyspnoea, forced expiratory volume in 1 s, functional status, exacerbation history and body mass index. Models for dementia and heart failure frequently included comorbidity, age, gender, blood tests and nutritional status. Similarly, mixed NCD models commonly included functional status, age, dyspnoea, the presence of skin pressure ulcers, oral intake and level of consciousness. The identified prognostic models exhibited varying predictive accuracy, with the majority demonstrating weak to moderate discriminatory performance (area under the curve: 0.5–0.8). Additionally, most of these models lacked independent external validation, and only a few underwent internal validation.ConclusionOur review summarised the most relevant predictors for identifying end-of-life in non-cancer NCDs. However, the predictive accuracy of identified models was generally inconsistent and low, and lacked external validation. Although efforts to improve these prognostic models should continue, clinicians should recognise the possibility that disease heterogeneity may limit the utility of these models for individual prognostication; they may be more useful for population level health planning.

ObjectivesMalnutrition is associated with poor quality of life and survival outcomes for patients with cancer, but is challenging to prevent or treat in pancreatic cancer due to the multifactorial drivers of nutritional decline. A novel application of percutaneous endoscopic gastrostomy with a jejunal extension tube to deliver supplementary nutrition may improve outcomes, and will be tested in a randomised controlled trial. This study explored the perspectives of people living with pancreatic cancer regarding the acceptability of this proposed intensive nutrition intervention, to elucidate appropriateness and anticipated barriers, and facilitate informed design of the planned trial.MethodsParticipants were patients with pancreatic cancer previously enrolled in a Pancreaticobiliary Cancer Biobank. Qualitative semi-structured interviews were conducted by telephone and transcribed verbatim for deductive thematic analysis. The Framework Model was used, with the Theoretical Framework of Acceptability as the analytical framework.Results10 participants were recruited. Four overarching themes were developed from interviews: (1) deterioration in physical and mental well-being are consequences of debilitating nutrition impact symptoms; (2) willingness to participate depends on an individual threshold for nutritional deterioration; (3) predicted perceived effectiveness outweighed anticipated burdens and (4) adequate dietetic support is needed for maintaining a percutaneous endoscopic gastrostomy with jejunal extension feeding tube at home with confidence.ConclusionsMost participants believed that the intervention would benefit people with advanced pancreatic cancer to maintain their nutrition throughout chemotherapy. Regular and ad hoc support was considered essential, and the degree of individual nutritional deterioration was identified as an important indicator for trial participation.

ObjectiveThis study investigated whether baseline or alteration in muscle mass affects complications during chemotherapy or overall survival (OS) in haematological malignancies.MethodsSkeletal Muscle Index (SMI) was evaluated by bioimpedance analysis before and after chemotherapy in patients with haematological malignancies, and the association between muscle mass and clinical data was retrospectively analysed.ResultsExactly 104 patients were enrolled, with a mean age of 62.2 years. SMI was 7.85 and 6.08 in male and female patients under 65 years and 7.10 and 5.92 over 65 years, before chemotherapy, respectively. Lower baseline SMI was not correlated with worse OS in total patients (p=0.915). After a median measurement interval of 30 days after chemotherapy (n=67), body weight and SMI decreased by 2.73% and 2.87% (mean), respectively. The decrease in body weight correlated with the loss of trunk muscle mass (R2=0.2107) but was more strongly associated with the loss of lower limbs muscle mass (R2=0.3985). The muscle mass of lower limbs significantly decreased in lymphoma patients who experienced febrile neutropenia (−0.42% vs −6.04%, p=0.040). OS significantly decreased in lymphoma patients with loss of lower limbs muscle ≥2.8% (p=0.0327).ConclusionsMuscle loss occurred following anticancer treatments, significantly contributing to worse outcomes. Body composition assessment and relevant multimodal prevention of muscle loss may be vital for patients receiving chemotherapy for haematological malignancies.

ObjectivesInterventions for patients with death rattle remain under consideration, and their families strongly acknowledge the need for improved care. However, few reports exist concerning specific and comprehensive nursing practices for them. This study aimed to clarify nursing practices for patients with death rattle and their families in hospital wards and examine each practice’s importance.MethodsWe used a modified Delphi method with expert nurses with extensive experience in end-of-life care. Participants were recruited using convenience and snowball sampling. First, we developed a list of nursing practices through a literature review and individual interviews. Second, we conducted the Delphi survey. Two rounds of judging were performed. Items were rated on a 9-point Likert scale (1=not important at all to 9=very important). An item was considered ‘important’ if at least 80% of the participants rated it ≥7.ResultsThe list comprised 40 items across 8 domains: assessment of death rattle and the distress felt by the patients, oral care, repositioning, adjustment of parenteral hydration, suctioning, administration of alleviating medications, communication with and assessment of family members who witness death rattle, and nurse’s attitude towards death rattle and the relevant interventions. Of the 46 recruited experts, 42 participated in both rounds. Participants regarded 37 of the 40 items as important.ConclusionsThis study specifically and comprehensively identified nursing practices for patients with death rattle and their families using a modified Delphi method to support clinical nursing practice and improve the quality of care.