There are substantial barriers to initiate advance care planning (ACP) for persons with chronic-progressive disease in primary care settings. Some challenges may be disease-specific, such as communicating in case of cognitive impairment. This study assessed and compared the initiation of ACP in primary care with persons with dementia, Parkinson’s disease, cancer, organ failure and stroke.

Longitudinal study linking data from a database of Dutch general practices’ electronic health records with national administrative databases managed by Statistics Netherlands.

Data from general practice records of 199 034 community-dwelling persons with chronic-progressive disease diagnosed between 2008 and 2016.

Incidence rate ratio (IRR) of recorded ACP planning conversations per 1000 person-years in persons with a diagnosis of dementia, Parkinson’s disease, organ failure, cancer or stroke, compared with persons without the particular diagnosis. Poisson regression and competing risk analysis were performed, adjusted for age, gender, migration background, living situation, frailty index and income, also for disease subsamples.

In adjusted analyses, the rate of first ACP conversation for persons with organ failure was the lowest (IRR 0.70 (95% CI 0.68 to 0.73)). Persons with cancer had the highest rate (IRR 1.75 (95% CI 1.68 to 1.83)). Within the subsample of persons with organ failure, the subsample of persons with dementia and the subsample of stroke, a comorbid diagnosis of cancer increased the probability of ACP. Further, for those with organ failure or cancer, comorbid dementia decreased the probability of ACP.

Considering the complexity of initiating ACP for persons with organ failure or dementia, general practitioners should prioritise offering it to them and their family caregivers. Policy initiatives should stimulate the implementation of ACP for people with chronic-progressive disease.

Palliative cancer care is comprehensive, specialised medical care of patients that aims to alleviate physical, mental and emotional distress based on patients’ needs rather than on prognosis. In Ethiopia, the federal ministry of health started palliative care (PC) in 2016. Since then, services have been developed and integrated as important components of the Health Sector Transformation Plan II. However, there is a scarcity of nationally summarised data regarding PC service utilisation in Ethiopia. Therefore, this protocol describes a planned systematic review and meta-analysis that will evaluate utilisation of PC services and its predictors among adult cancer patients in Ethiopia.

The online databases of PubMed, Hinari, EMBASE, CINHAL, Science Direct, Scopus and Google Scholar will be comprehensively searched from inception to 31 February 2025. To assess the quality of included studies, the Joanna Briggs Institute critical appraisal tools will be used. The statistical software STATA V.17 will be used for data analyses. To examine the heterogeneity between studies, inverse variance (I²) will be used. To calculate the pooled prevalence of PC service utilisation, a fixed or random effects meta-analyses model will be used with a 95% CI, depending on the presence or absence of heterogeneity between included studies. To look for publication bias, a visual inspection of the funnel plot and Egger and Begg’s regression test and a 5% level of significance will be used.

Ethical approval is not applicable. The results will be disseminated to academic beneficiaries and the public.

The primary aim of this study was to assess the attitudes and practices of Chinese hospice physicians involved in palliative sedation, with an additional focus on exploring factors associated with the experience of palliative sedation.

A cross-sectional study using a web-based structured questionnaire.

With the support of the Hospice Committee of the Chinese Anti-Cancer Association, this study employed a convenience sampling method to survey hospice physicians nationwide. Subsequently, a total of 550 questionnaires were distributed via email.

Physicians’ attitudes and practices regarding palliative sedation.

The statistical analysis was based on 449 valid responses. Among them, 252 had no experience with palliative sedation, while only 197 had experience in this area. Notably, the study of relevant guidelines (OR=8.01, 95% CI (5.19 to 12.38), p

The findings indicate a relative scarcity of hospice physicians in China with experience in palliative sedation, with many encountering significant stress during its implementation. There is an urgent need to enhance professional training and establish guidelines for palliative sedation in China, which will provide a solid foundation for its application and foster the development of hospice care.

To gain an in-depth understanding of the real support priorities and perceptions of caregivers of individuals receiving care with end-stage heart failure regarding hospice care.

A qualitative descriptive approach was employed.

Using a purposive sampling approach, 16 primary caregivers of individuals receiving care with end-stage heart failure from a tertiary hospital in Hangzhou, Zhejiang province, were selected as interview participants. A semi-structured interview outline based on literature review was used to conduct face-to-face interview. Tape-recorded data with notes were transcribed, and the content analysis method was applied to analyse the data and distil themes.

After integration and analysis of 16 interview transcripts (n=16), the thematic analysis resulted in four themes supporting the overall findings, including seeking collaborative decision-making in palliative care, demand for appropriate healthcare resources, search for emotional respite and support in hospice settings and desire for knowledge and information about hospice care and heart failure. Each theme encompasses two subthemes.

Caregivers of individuals receiving care with end-stage heart failure have multiple care responsibilities and diverse support priorities. Medical personnel should be aware of the burden that family caregivers bear and provide more targeted and individualised assistance to the caregiver. At the organisational level, administrators support priorities to establish comprehensive, lifelong and compassionate hospice services to ensure that the quality of life for caregivers and the quality of care for individuals receiving care can be further enhanced.

Patients with metastatic oncogene-driven non-small cell lung cancer (NSCLC) are experiencing longer and uncertain trajectories of life-limiting illness due to advances in precision medicine. These advanced cancer survivors face new challenges related to living with uncertainty and desire more support to maximize their health and quality of life. Therefore, we developed a population-specific, blended palliative and survivorship care intervention to address the supportive care needs of patients recently diagnosed with advanced lung cancer and who are receiving targeted therapy for NSCLC with EGFR, ALK, ROS1 or RET driver mutations.

This study is a single-site, non-blinded pilot randomised controlled trial of an intervention for patients with metastatic oncogene-driven NSCLC, Patient-centred, Optimal Integration of Survivorship and palliative carE (POISE) versus usual care. POISE consists of a brief series of structured visits with a trained palliative care clinician to address coping with uncertainty, increase prognostic awareness and promote healthy lifestyle behaviours. We will recruit 60 patients from the Massachusetts General Hospital Cancer Center. Patients will be randomised into a 1:1 ratio to the intervention arm or the usual care arm. Patients randomised to the intervention arm will complete four 60 min virtual or in-person visits with a palliative care physician. The usual care arm will receive standard oncology care. Patients in both arms will complete survey assessments at enrolment, 12 weeks and 20 weeks after enrolment, and patients in the intervention group will complete an exit interview. The primary outcome measure of this trial is feasibility, which will be defined by ≥60% enrolment among eligible patients, ≥70% completion of all sessions for participants in the intervention arm and ≥70% completion of all surveys for all study participants. Exploratory outcomes include acceptability, emotional coping with prognosis, self-efficacy for chronic disease management, prognostic awareness, quality of life, anxiety, depression, intolerance of uncertainty and documentation of goals and values discussions in the electronic health record.

This study was approved by the Dana-Farber/Harvard Cancer Center’s institutional review board (protocol 20-722). The protocol is reported in accordance with the Standard Protocol Items: Recommendations for Interventional Trials guidelines, and the study will be reported in accordance with the Consolidated Standards of Reporting Trials statement for non-pharmacological trials.

NCT04900935.

To characterise neonatal intensive care unit (NICU) parents’ grieving process across time and to identify their perspectives on the healthcare providers’ actions that acted as facilitators or barriers to the grieving process in the short (3–9 months) and longer term (18–24 months).

Longitudinal mixed-methods study combining standardised grief and care satisfaction scales with qualitative data collected through semistructured interviews. The qualitative component was guided by an interpretive description approach, which is well-suited for generating clinically relevant insights into complex human experiences such as parental grief. Triangulating quantitative and qualitative data enhanced insight into how parental grief and perceptions of care evolved between 3–9 months and 18–24 months post loss.

Tertiary-level NICU hospital in British Columbia, Canada.

13 parents participated in the study, including 10 mothers and three fathers. Among them were two couples who participated as individuals. Their median age was 35 years (IQR: 32–38).

Quantitative data obtained through the application of the Perinatal Grief Scale (PGS) and care satisfaction scale and qualitative data collected through semistructured interviews. Data were collected at two points (3–9 months and 18–24 months post loss) to track parents’ grief over time.

The PGS scores indicated active grieving without complicated grief, while the Care Satisfaction Scale reflected high overall satisfaction with care. Thematic analysis identified two primary grieving stages: the initial traumatic event during NICU hospitalisation and the complex adjustment to life post loss. Key factors influencing parents’ coping mechanisms included respecting the infant’s dignity, enhancing communication and decision-making, preserving the bond between parents and the NICU team, nurturing enduring connections with the infant and aiding in finding meaning from the experience.

The study outlined the stages parents experience during and after infant loss, offering practical steps for NICU professionals to aid families in their healing process.

People with a learning disability face significant health and mortality inequalities as well as wider systemic inequities. Challenges in palliative and end of life care (PEOLC) include communication difficulties, lack of involvement in decision-making and multimorbidity. Early identification of PEOLC needs is challenging, impacting timely care planning. The study aims to (1) understand barriers and enablers to providing high-quality, accessible PEOLC for people with a learning disability, and identify effective service delivery models and interventions and (2) improve PEOLC quality and accessibility by developing robust guidance for health and social care services.

This is a mixed-methods study guided by the NHS England 2021 Ambitions Framework and adopting the Social Model of Disability. There are four workstreams: (1) a retrospective cohort analysis of the Clinical Practice Research Datalink; (2) a rapid scoping review; (3) field work in four study sites across England, involving (a) interviews with senior leaders and commissioners (n=up to 16) and informal stakeholder engagement conversations; (b) ethnographic case studies with people with a learning disability at the end of life (n=up to 20) and retrospective case reviews of people with a learning disability who have died (n=up to 40), using family and staff interviews and (c) development and piloting of methods for enabling systematic identification of PEOLC need, using experience-based co-design and (4) patient and public involvement (PPI) activities and a co-production group of 10 people with a learning disability to support data analysis and outputs. Data will be analysed using adapted framework analysis methodology. This is an inclusive, co-produced study with significant involvement of advisors and researchers with a learning disability as part of the study team.

Ethical approval has been obtained for workstreams 1, 3a and 3b. Significant attention has been paid to ensuring informed consent, making adjustments for capacity. Accessible information and consent forms will be used, involving consultees and adhering to the Mental Capacity Act for participants who lack capacity. Data security will follow General Data Protection Regulation rules. Dissemination will include patient exemplars, guidance and various resources, engaging stakeholders through multiple formats.

researchregistry10500.

Specialised outpatient palliative care (SOPC) is an important element of the palliative care concept in Germany. The aim of this study is to compare patient characteristics, care processes and outcomes of patients with heart failure (HF) and oncological diseases, using the latter as a reference group to identify disease-specific needs and support the adaptation of SOPC to non-oncological conditions such as HF.

In this cross-sectional study (22 SOPC providers), clinical data of all palliative care patients who were treated between 2017 and 2021 were retrospectively analysed.

Survival was estimated by Kaplan-Meier analysis. To further examine the relationship between patient survival time and various variables, a Cox proportional hazards model was used. Differences in symptom burden were tested for statistical significance using the McNemar test.

Data from 48 882 patients were analysed, with 5387 (11.0%) identified as having a primary HF diagnosis. This cohort was compared against a large oncological group consisting of 34 287 (70.1%) patients.

For HF patients, the mean number of days spent in SOPC was 30.5±67.7 days and for oncological patients 44.1±72.0 days. A significantly higher proportion of oncological patients died in hospices (14.0%) and hospitals (6.9%) compared with HF (2.9% and 2.2%). Age-adjusted Charlson Comorbidity Index at admission into SOPC was 9.4±3.1 in oncological patients compared with 6.7±1.7 in HF (p

HF patients in SOPC exhibit a different clinical profile compared with oncological patients, characterised by significant symptom burden and shorter survival times. These results emphasise the necessity for tailored palliative interventions to address the specific needs of HF patients.

The needs of patients in palliative care (PC) are multiple and changing. Several tools assess them, but there is a lack of homogeneity among them. A specific diagnostic tool to assess complexity in PC (IDC-Pal: Instrumento Diagnóstico de la Complejidad en Cuidados Paliativos, in Spanish) was created in community and hospital settings with 36 items to diagnose PC complexity, but its application in primary care is difficult.

(1) To generate an adapted version to primary care of the IDC-Pal tool to identify and stratify PC complexity in the adult population. (2) To determine face, content, criterion and construct validity and reliability of the new instrument.

There are three phases of clinimetric cross-sectional observational validation study: Phase 0: Review of the original tool structure suitability for its use in primary care setting by a committee (researchers and the original developer team). Phase 1: Expert consensus phase by Delphi technique with physicians, nurses and social workers from primary care and PC. Phase 2: Empirical validation of the resulting tool in primary care using a cross-sectional descriptive design involving physicians and case manager nurses from across Andalucia, who will recruit adult patients with PC needs from healthcare centres that accept to participate in the study. Reliability (Cronbach’s alpha, McDonald’s omega, interclass correlation coefficient) and construct validity (exploratory factor analysis) analysis will be carried out; convergent criterion validity will be assessed with the NEC-PAL (Necesidades Paliativas Questionnaire, in Spanish) instrument. Differences by gender, type of professional and place where it is administered will be explored. Interobserver reliability analyses will be carried out using intraclass correlation coefficient, Bland-Altman plots and concordance analysis. Phase 0–1 results were expected by 2025 and Phase 2 results by 2026. Reporting method: CRISP checklist. This protocol was conducted without patient or public participation.

This study evaluates a novel, co-designed tool to diagnose PC complexity to inform practice recommendations for a more efficient allocation of resources that may be included in future clinical practice guidelines. The study has been approved by the Provincial Research Ethics Committee of Málaga as of July 2023 and will be conducted in accordance with the principles established in the Declaration of Helsinki, the Council of Europe Convention on Human Rights and Biomedicine, and the requirements established in Spanish legislation. The study conforms to the norms of good clinical practice. All participants in the Delphi study must express their agreement to participate in the survey by providing informed consent (IC) before beginning the questionnaire. For the development of Phase 2, the primary care professionals who agree to participate will sign a researcher commitment, and the patients included in the study will sign a written IC before the data collection. Dissemination of the results will inform future research on the appropriate diagnosis of PC complexity in the primary care setting, which is of paramount importance due to its gatekeeper position. Dissemination will be aimed at academics and healthcare professionals through publications, presentations and training workshops on the use of the diagnostic tool.

There is evidence that talking about the end of life with patients facing a life-threatening disease is not upsetting, and in fact, it may even be beneficial. However, both patients and health professionals can find it difficult to engage in these conversations. The aim of this clinical trial is to explore whether proactively inviting people with advanced cancer to share their thoughts about death and dying is distressing for them, comparing the impact with usual clinical practice (ie, a reactive approach to these issues).

A stepped-wedge cluster randomised controlled trial involving six palliative care units in Spain will be conducted. Each unit will recruit participants for both the experimental and control groups. Units will be randomised to determine the order in which they will begin implementing the intervention: GO-TaD (Give the Opportunity to Talk about Death thoughts). The trial will involve six sequences and seven periods (steps), with four patients per period (patients in each period will be different). The primary outcome will be emotional distress, assessed with the Detecting Emotional Distress scale. The following secondary variables will also be analysed: hopelessness, using the Beck Hopelessness Scale; quality of the patient–professional relationship, with the Patient–Doctor Relationship Questionnaire (PDRQ-9); and quality of life, with the Palliative Outcome Scale . The trial will follow the CONSORT extension for stepped-wedge cluster randomised designs. The primary analysis will include all eligible patients, applying mixed-effects regression models for binary results and mixed linear models for continuous data. Results will be reported as risk differences and ORs, with 95% confidence intervals. Analyses by sub-groups of interest (eg, age, gender, type of palliative care unit) will also be conducted. All analyses will be performed using R.

Ethical approval has been obtained from the researchers' university and all participating centres. Results will be disseminated through peer-reviewed open access publications, academic conferences and presentations to clinical audiences.

NCT06420609.

To determine the factors influencing palliative care utilisation in patients with advanced cancer and to assess its association with the quality of death (QOD).

A cross-sectional study.

This study was conducted in tumour hospitals in the Hunan and Sichuan provinces of China. In 2021, the country launched a ‘palliative care standard wards’ project, identifying 16 medical institutions as the first pilot sites.

Deceased patients who met the admission criteria for a standard palliative care unit were the study subjects, and their caregivers were recruited for questionnaires.

No interventions were applied in this study.

A self-reported questionnaire survey was administered to caregivers of deceased patients with advanced cancer in mainland China. Binary logistic regression was used to identify factors influencing palliative care utilisation. The association between utilisation of palliative care and the QOD was tested using an independent samples t-test.

Of 947 patients, 342 (36.1%) received palliwiative care. Data were collected from 400 caregivers (42.2%). Palliative care utilisation was associate with intrusion operation (adjusted OR (aOR): 1.7, 95% CI: 1.05 to 2.92, p=0.032) and relationship with patients caregiver age (aOR=6.5, 95% CI: 3.6 to 12.7, p

Patient and caregiver characteristics influence palliative care utilisation, and use of palliative care contributes positively to most dimensions of the QOD. Future research should further explore multiple factors influencing palliative care utilisation and examine whether they contribute to the QOD.

Communication challenges are among the main barriers for people with intellectual disabilities in accessing palliative care. They include inadequate skills among staff and difficulties with confirming understanding and around the presentation and assessment of symptoms. In-depth analysis of interactions between people with an intellectual disability and staff may shed light on these communicative challenges as well as facilitators. However, no studies have closely analysed the interactions between people with an intellectual disability and professionals within palliative care settings.

This protocol describes a pilot study assessing the feasibility and acceptability of conducting a Conversation Analysis study involving video-recording palliative care conversations between people with intellectual disabilities and professionals.

Three conversations between patients with an intellectual disability, their companions and palliative care staff will be video recorded in a UK hospice. Recordings will be transcribed and analysed using Conversation Analysis. Communication phenomena of interest and worth further exploration will be identified in collaboration with key stakeholders.

The study received a favourable opinion by a UK research ethics committee in February 2025. All participants must provide informed consent to take part in the study. It will be carefully assessed that potential participants with an intellectual disability have capacity to consent to take part. Accessible study information materials for participants with an intellectual disability are available (ie, easy-read and video).

Study findings will be disseminated in academic papers and conference presentations. Progress and findings will also be shared via social media and with relevant groups of people with intellectual disabilities, family carers, service providers and academics.

Despite palliative care (PC) potentially improving quality of life, only a tiny proportion of patients with heart failure (HF) are receiving PC. Globally, PC for HF patients faces several challenges; however, a systematic assessment of the barriers and facilitators to PC of patients suffering from HF is lacking. We aimed to identify barriers and facilitators to offering PC to HF patients.

The mixed-methods systematic review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis statement.

PubMed, CINAHL, MEDLINE, PsycINFO, Web of Science were searched from onset of literature database to 24 March 2025.

We included both qualitative studies and quantitative studies addressing barriers and facilitators to offering PC to patients with HF reported by healthcare providers, patients, family members and caregivers.

Data extraction was done independently by two reviewers, and quality assessment was completed using the mixed-methods appraisal tool. The Capabilities-Opportunities-Motivations-Behaviour (COM-B) model and the Theoretical Domain Framework (TDF) were used to identify potential barriers and facilitators.

48 studies were included out of 4168. 289 items related to barriers and 88 items related to facilitators were categorised into 72 themes. These themes were found to align with at least one of the 14 TDF domains and the COM-B model. ‘Environmental context and resources’ (eg, lack of time, human, facilities and equipment resources; 77.2% of barriers vs 22.8% of facilitators), ‘knowledge’ (eg, insufficient awareness and knowledge of PC and/or needs; 91.8% of barriers vs 8.2% of facilitators) and "‘social influences’ (eg, limited communication and collaboration between healthcare professionals; 58.7% of barriers vs 41.3% of facilitators) were the three TDF domains that encoded the largest amount of data.

This review identified key barriers to PC for HF patients, primarily involving resource limitations, knowledge gaps and poor interdisciplinary collaboration. Findings highlight the need for targeted interventions addressing systemic and knowledge-related challenges.

CRD42023484807.

To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial.

We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1:1 allocation ratio, using convergent mixed methods.

Home-based care without 24/7 paid care provision, in three UK sites.

Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before the approach, including a known history of substance abuse or carer ability to be trained to competency.

Intervention-group carers received training by local nurses using a manualised training package.

Quantitative data were collected at baseline and 6–8 weeks post-bereavement and via carer diaries. Interviews with carers and healthcare professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures.

The secondary outcome measure was time to symptom relief, calculated using data items from the carer diary, after the patient had died.

In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting >30% of eligible dyads. The expected recruitment target (50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced (30% (6/20) usual care and 80% (16/20) intervention). The feasibility criterion of >40% retention was, therefore, considered not met. A total of 12 carers (intervention, n=10; usual care, n=2) and 20 healthcare professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The intervention group had a considerably shorter time to medication administration than the usual-care group (median time to administer medication in intervention=5 min, usual-care=105 min). Intervention group carers felt confident in administering medication. Healthcare professional support was sought by intervention group carers in 24 out of 147 (16.3%) medication administration entries. The context of the feasibility study was not ideal, as district nurses were overstretched, unfamiliar with research methods and possibly not in equipoise. A disparity in readiness to consider the intervention was demonstrated between carers, who were uniformly enthusiastic, and healthcare professionals who were not. Findings confirmed methodological and ethics issues pertaining to researching the last days of life care.

The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring healthcare professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial.

ISRCTN11211024.

People experiencing homelessness (PEH) often die at a younger age than the general population. Advanced ill-health often occurs late in its trajectory (if at all), leaving many PEH to die without adequate support from hospital-based, hospice-based or community-based palliative care services. Despite the high rate of bereavement and exposure to death among PEH, there are rarely opportunities for them to reflect on their experiences, thoughts and preferences around death or receive bereavement support. Death cafés are a global social franchise, providing a space for people to participate in an open group discussion about death, dying and bereavement. They are free to attend and unstructured but facilitated.

To explore the perspectives of PEH and the professionals that support them with regards to the potential acceptability, benefits and challenges of death cafes.

A qualitative study comprising of interviews with nine homelessness and/or palliative care professionals with experience of running death cafés for, or supporting PEH in other ways, and two focus groups with nine people with lived experience of homelessness. The research was co-produced with a lived experience co-researcher forming a core part of the research team. Reflexive thematic analysis was utilised to develop themes.

Five themes were developed to highlight the perspectives and experiences of death cafés for PEH: choice; expertise in facilitation: recognising risk and the unstructured nature; promoting safety against potential risk; potential benefits and potential practical considerations. Themes highlight the need for a trauma-informed approach. Death cafés could be impactful, where done well, but they are not without risk.

Death cafés for PEH pose risks that require comprehensive consideration and trauma-informed, expert facilitation. However, this research highlighted that a low-pressure space to explore thoughts around death, dying and bereavement is currently an unmet need within this population.

Globally, the demand for community palliative care, delivered within the home setting, is rising. Hospice support workers, also referred to as healthcare assistants, play a crucial role in providing this care, but evidence indicates they face challenges relating to inadequate training, isolation and emotional labour. This realist review aims to understand how peer support interventions can support healthcare assistants in delivering hospice care at home.

The realist review will follow a five-step process to explore the research question: (1) locating existing initial programme theories, (2) searching for evidence, (3) selecting and appraising evidence, (4) extracting and organising data and (5) synthesising evidence and drawing conclusions. Comprehensive searches of academic databases (CINAHL, MEDLINE, AMED, Scopus) and grey literature sources will be conducted between November and December 2024, with no restrictions on publication date applied. Search strategies will be iteratively refined, with evidence selected based on relevance and rigour. Data will be extracted and coded using a realist logic model of analysis. The review will develop an explanatory programme theory for peer-to-peer interventions which would identify what, how, for whom, why and in what circumstances peer-to-peer interventions may support delivery of hospice care at home. It will explore the contexts, mechanisms and outcomes of these interventions using context-mechanism-outcome configurations.

Ethical approval is not required as the review involves no primary data collection. This review aims to clarify research gaps, inform next stages of a wider study, policy and practice. Reporting of the findings will adhere to RAMESES publication standards for realist syntheses, ensuring transparency and rigour in reporting. Results will be disseminated through peer-reviewed publications, conference presentations and other strategies identified by the stakeholder group.

CRD42024606133.

Critically ill patients in intensive care units (ICUs) receive life-sustaining treatments aimed at restoring or maintaining organ function. ICU admission often involves substantial multidimensional suffering that can burden patients, their families and surrogates. Multidisciplinary palliative care support can help alleviate their sufferings. In South Korea, however, palliative care has not yet been integrated into critical care settings, highlighting the need to explore the feasibility of its implementation within the ICU.

This study aims to test the feasibility of a consultation-based palliative care intervention in the ICU. The study will include 20 patients admitted to the ICU of a tertiary hospital due to sudden severe acute brain injury or progressive organ failure, along with their family caregivers. A palliative care team, comprising a social worker and a palliative care physician, will provide consultations to the ICU healthcare professionals based on the palliative care needs, following family counselling. Additional family meetings will be held if necessary. The primary outcomes will include participation rates, family counselling rates and study completion rates. The intervention’s potential impact will be assessed by changes in surrogate decision-making conflict, self-efficacy, depression and anxiety, post-decision regret and the experience of patient-centred and family-centred care. The demand and acceptability of the intervention will be assessed through semi-structured interviews with family surrogates, followed by qualitative analysis.

This study will be conducted in accordance with the Declaration of Helsinki and applicable national laws and regulations. The clinical study protocol, along with any protocol amendments and the informed consent form, has been approved by the Institutional Review Board of the Hospital (2404-111-1532). We plan to submit the study results for presentation at conferences and for publication in international peer-reviewed journals. Data will also be made available on request to participants, funding agencies and interested researchers.

NCT06490835.

An important goal of advance care planning (ACP) is ensuring that patients receive care concordant with their preferences. High-quality evidence is needed about the effect of ACP on this and other outcomes.

Planning Ahead is a randomised controlled trial to test the effectiveness of facilitated ACP in community-dwelling older adults including those with normal cognition and those with Alzheimer’s Disease and Related Dementias (ADRD) who are at high risk of death. The primary aim is to determine the effect of the intervention on discordance between preferences for medical treatments and the treatments received in the year after the intervention. Secondary outcomes include decision-making quality, care at the end of life and cost. Eligible patients have a primary care provider at one of two Midwest health systems, have an approximate 33% mortality risk and do not have a POLST form at baseline. Patients with capacity can invite the person they would choose to be their healthcare decision maker to participate as a study partner. A surrogate decision maker enrols and receives the intervention for patients who lack capacity due to ADRD. The intervention uses the Respecting Choices Advanced Steps (RCAS) model of ACP delivered by a registered nurse and includes identification of the patient’s values and goals, education about ACP and the POLST form and the opportunity to complete a POLST form.

The study is approved by the Indiana University Institutional Review Board. Primary and secondary analyses will be published in peer-reviewed journals. We also plan dissemination through the media. We will construct a deidentified data set that could be available to other researchers. Survey data will be preserved and shared via the NIH-supported National Archive of Computerised Data on Ageing’s (NACDA) Open Ageing Repository (OAR).

NCT04070183.

Cardiovascular disease (CVD) is a major cause of death globally. In advanced stages, patients with CVD often require palliative care due to reduced health-related quality of life from physical, psychological and spiritual symptoms, along with physical disability.

To investigate (1) the symptom and function burden of patients with CVD on their first admission to specialist palliative care services and (2) how these care burdens, and other clinical characteristics, affected patients’ utilisation of community-based versus inpatient services.

A national population-based observational study using point-of-care outcomes sourced from the Australian palliative care outcomes and collaboration (PCOC).

Community-based and inpatient Specialist palliative care services across Australia registered in the PCOC.

Patients who required specialist palliative care principally for CVD, and whose death occurred between 1 January 2013 and 31 December 2022.

Five validated clinical instruments were used to collect point-of-care outcomes on each individual’s function (Resource Utilisation Groups - Activities of Daily Living (RUG) & Australia-modified Karnofsky Performance Status (AKPS)), symptom distress (Symptoms Assessment Scale & Palliative Care Problem Severity Score) and other clinical characteristics (Palliative Care Phases). Multivariable logistic regression was applied to evaluate how patients’ functional and symptom burden influenced their use of inpatient versus community-based palliative care services.

Our analysis included 17 002 patients with CVD, with 7539 (44.3%) receiving community palliative care services and 9463 (55.7%) accessing inpatient palliative care services. On admission to palliative care services, patients often exhibit significant physical functional impairments and substantial symptom burdens, particularly related to fatigue and breathing difficulties. In comparison, patients accessing inpatient services tended to have greater functional impairment (p

Patients with CVD frequently require support to manage decreased functional abilities, as well as symptoms like fatigue and breathing difficulties. With greater investment in community-based supportive services and a skilled palliative care workforce, more individuals with advanced CVD could potentially receive palliative care in community settings.

The objective was to explore treatment experience of hip denervation via PEricapsular Nerve Group block with phenol in non-operative management and end-of-life (EOL) care after hip fractures.

A qualitative study was conducted with semistructured interviews. The interviews were analysed using thematic discourse analysis.

The study was conducted in a large regional hospital in the Netherlands. Proxies (first-contact person, often a first-degree or second-degree relative) of frail older adults treated between January 2022 and June 2023 were included, as patients had either cognitive impairment or were deceased.

The process surrounding hip denervation was emotionally charged due to the EOL setting and preceding discussion on whether or not to operate. The EOL setting impaired information uptake in participants and complicated communication. Hip denervation was experienced as a partial source of comfort. Logistics and aftercare were described as suboptimal. Participants emphasised the importance of a dignified and autonomous EOL phase.

This study describes treatment experience from the patient–proxy perspective. It highlights the importance of a provider setting attuned to EOL care needs. Adequate pain management, effective communication and realistic autonomy for patients and proxies are warranted.