UNASSIGNED: Care home residents often lack access to end-of-life care from specialist palliative care providers. Palliative Care Needs Rounds, developed and tested in Australia, is a novel approach to addressing this.
UNASSIGNED: To co-design and implement a scalable UK model of Needs Rounds.
UNASSIGNED: A pragmatic implementation study using the integrated Promoting Action on Research Implementation in Health Services framework.
UNASSIGNED: Implementation was conducted in six case study sites (England, n = 4, and Scotland, n = 2) encompassing specialist palliative care service working with three to six care homes each.
UNASSIGNED: Phase 1: interviews (n = 28 care home staff, specialist palliative care staff, relatives, primary care, acute care and allied health practitioners) and four workshops (n = 43 care home staff, clinicians and managers from specialist palliative care teams and patient and public involvement and engagement representatives). Phase 2: interviews (n = 58 care home and specialist palliative care staff); family questionnaire (n = 13 relatives); staff questionnaire (n = 171 care home staff); quality of death/dying questionnaire (n = 81); patient and public involvement and engagement evaluation interviews (n = 11); fidelity assessment (n = 14 Needs Rounds recordings).
UNASSIGNED: (1) Monthly hour-long discussions of residents\' physical, psychosocial and spiritual needs, alongside case-based learning, (2) clinical work and (3) relative/multidisciplinary team meetings.
UNASSIGNED: A programme theory describing what works for whom under what circumstances with UK Needs Rounds. Secondary outcomes focus on health service use and cost effectiveness, quality of death and dying, care home staff confidence and capability, and the use of patient and public involvement and engagement.
UNASSIGNED: Semistructured interviews and workshops with key stakeholders from the six sites; capability of adopting a palliative approach, quality of death and dying index, and Canadian Health Care Evaluation Project Lite questionnaires; recordings of Needs Rounds; care home data on resident demographics/health service use; assessments and interventions triggered by Needs Rounds; semistructured interviews with academic and patient and public involvement and engagement members.
UNASSIGNED: The programme theory: while care home staff experience workforce challenges such as high turnover, variable skills and confidence, Needs Rounds can provide care home and specialist palliative care staff the opportunity to collaborate during a protected time, to plan for residents\' last months of life. Needs Rounds build care home staff confidence and can strengthen relationships and trust, while harnessing services\' complementary expertise. Needs Rounds strengthen understandings of dying, symptom management, advance/anticipatory care planning and communication. This can improve resident care, enabling residents to be cared for and die in their preferred place, and may benefit relatives by increasing their confidence in care quality.
UNASSIGNED: COVID-19 restricted intervention and data collection. Due to an insufficient sample size, it was not possible to conduct a cost-benefit analysis of Needs Rounds or calculate the treatment effect or family perceptions of care.
UNASSIGNED: Our work suggests that Needs Rounds can improve the quality of life and death for care home residents, by enhancing staff skills and confidence, including symptom management, communications with general practitioners and relatives, and strengthen relationships between care home and specialist palliative care staff.
UNASSIGNED: Conduct analysis of costs-benefits and treatment effects. Engagement with commissioners and policy-makers could examine integration of Needs Rounds into care homes and primary care across the UK to ensure equitable access to specialist care.
UNASSIGNED: This study is registered as ISRCTN15863801.
UNASSIGNED: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128799) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 19. See the NIHR Funding and Awards website for further award information.
Care home residents often lack access to end-of-life care from hospice teams and so may experience distressing symptoms at end of life if care home staff cannot fully meet their needs. We examined how an approach which worked well in Australia called ‘Palliative Care Needs Rounds’ (or ‘Needs Rounds’) could be used in the United Kingdom. We interviewed 28 people (care home staff, hospice staff and other National Health Service/social care professionals in the community) about their understanding of the United Kingdom setting, what might help trigger change and what results they would want. We discussed these interviews at online workshops with 43 people, where we started to develop a theory of ‘what would work, for whom, under what circumstances’ and determine what United Kingdom Needs Rounds would look like. Six specialist palliative care services, each partnered with three to six local care homes, used Needs Rounds for a year. We collected information on care home residents, staff experiences of using Needs Rounds, relatives’ perceptions of care quality, staff views of residents’ quality of death, and on their ability to provide a palliative approach to residents. We found that Needs Rounds can provide care home staff and specialist palliative care staff the opportunity to work together during a protected time, to plan for residents’ last months of life. Needs Rounds build care home staff confidence and can strengthen relationships and trust, while using each services’ expertise. Needs Rounds strengthen understandings of dying, symptom management, advance/anticipatory care planning and communication between care home staff, families, specialist palliative care staff and primary care. This improves the quality of resident care, enabling residents to be cared for and die in their preferred place, and also benefits relatives by increasing their confidence in care quality.

OBJECTIVE: The prevalence and mortality of chronic liver disease has risen significantly. In end stage liver disease (ESLD) the survival of patients is approximately 2 years. Despite the poor prognosis and high symptom burden of these patients, integration of palliative care is reduced. We aim to analyze the agreement between palliative care and hepatology physicians of clinical scenarios that could require palliative care intervention.
METHODS: A cross-sectional study was conducted. Palliative care and hepatology physicians were surveyed. Using a five-point Likert scale, their perceptions of palliative care in ESLD were rated. Their agreement in clinical scenarios that could require palliative care intervention were evaluated. Analyses were conducted to assess any differences by primary role (hepatology vs. palliative care) and length of practice (<10 years vs. 10 years).
RESULTS: A total of 123 responses were obtained: 52% from palliative care and 48% from hepatology. The majority (66.7%) work in the field for up to ten years. There was a great consensus in 4 of the 8 clinical scenarios. In scenarios with less consensus, the area of activity and length of practice influence the reliance of physicians on palliative care. Involvement of palliative care in ESLD was considered \"rare\" by 30% and 61% consider difficult to predict the prognosis. More than 90% support medical training in both areas of activity.
CONCLUSIONS: The current involvement of palliative care is considered low, but there are clinical conditions that reveal a clear consensus and there\'s a unanimous view of the relevance of training.

BACKGROUND: Advance Care Planning (ACP), as a process for expressing and recording patients\' preferences about end-of-life care, has received increasing attention in recent years. However, implementing ACP has been challenging in Iran.
OBJECTIVE: To assess the readiness for advance care planning and related factors in the general population of Iran.
METHODS: This cross-sectional study was conducted on the general population of Iran in 2022. The data was collected using demographic information questionnaire and The RACP Scale. The purpose and methodology of the research was explained to all participants, and upon their agreement an informed consent was obtained. Participants were invited to fill out the questionnaires wherever is more convenient for them, either alone or if needed, with the help of the researcher to protect their privacy. Chi-square, fisher exact test and multiple logistic Regression model were used to assess the effective factors on the RACP. The data were analyzed by SPSS software version 26.
RESULTS: A total of 641 people with an average age of 36.85 ± 12.05 years participated in this study. Of those, 377 (58.8%) had high RACP. The logistics model showed an association between the chance of readiness for receiving ACP with participants\' education level, such that the chance of readiness in those with Master\'s or Ph.D. degrees was three times higher than those with a diploma (p = 0.00, OR:3.178(1.672, 6.043)). However, the chances of readiness in those with bachelor\'s degrees was not significantly different from those with a diploma (p = 0.936, OR: 0.984 (0.654, 1.479)). Moreover, the chance of readiness was 1.5 higher in participants over 40 years of age compared with participants under the age of 40 (P = 0.01, OR: 1.571(1.10, 2.23)).
CONCLUSIONS: According to the findings of this study, it can be concluded that there is a relatively RACP among people in Iranian society. The readiness of individuals for ACP increases by their age and education level. Therefore, by holding appropriate training intervention, we can increase the readiness of the public for ACP to improve their end-of-life outcome.

BACKGROUND: This study aimed to investigate the trends of aggressive care at the end-of-life (EoL) for patients with advanced cancer in Korea and to identify factors affecting such care analyzing nationwide data between 2012 to 2018.
METHODS: This was a population-based, retrospective nationwide study. We used administrative data from the National Health Insurance Service and the Korea Central Cancer Registry to analyze 125,350 patients aged 20 years and above who died within one year of a stage IV cancer diagnosis between 2012 and 2018.
RESULTS: The overall aggressiveness of EoL care decreased between 2012 and 2018. In patients\' last month of life, chemotherapy use (37.1% to 32.3%; p < 0.05), cardiopulmonary resuscitation (13.2% to 10.4%; p < 0.05), and intensive care unit admission (15.2% to 11.1%; p < 0.05) decreased during the study period, although no significant trend was noted in the number of emergency room visits. A steep increase was seen in inpatient hospice use in the last month of life (8.6% to 26.6%; p < 0.05), while downward trends were observed for hospice admission within three days prior to death (13.9% to 11%; p < 0.05). Patients were more likely to receive aggressive EoL care if they were younger, women, had treatment in tertiary hospitals, or had hematologic malignancies. In the subgroup analysis, the overall trend of aggressive EoL care decreased for all five major cancer types.
CONCLUSIONS: The aggressiveness of EoL care in stage IV cancer patients showed an overall decrease during 2012-2018 in Korea.

UNASSIGNED: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 \'A\'s test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking.
UNASSIGNED: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients.
UNASSIGNED: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment.
UNASSIGNED: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years.
UNASSIGNED: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%-98%) and a specificity of 94% (95% CI 90%-99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94-1).
UNASSIGNED: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings.
UNASSIGNED: ISCRTN 97417474.

BACKGROUND: Patients with palliative care needs live with the reality of limited time due to illness or age, eliciting emotional and existential responses. A failure to address their existential needs can lead to significant suffering. A person-centred approach is paramount to effectively address these needs, emphasising holistic care and effective communication. Although existing communication models focus on predefined frameworks, a need exists to explore more spontaneous and confidential conversations between patients and nurses. Confidential conversations have the potential to build therapeutic relationships and provide vital emotional support, highlighting the need for further research and integration into palliative care practice. This study aims to more deeply understand the meaning of confidential conversations for patients with palliative care needs.
METHODS: In-depth interviews were conducted with 10 patients in the context of specialised palliative care. A hermeneutic analysis was used to gain a deeper understanding of the meanings of the conversations.
RESULTS: The patients had varying experiences and wishes concerning confidential conversations. They strived for self-determination in finding confidants, seeking trust and comfort in their interactions with nurses. Trust was crucial for creating a safe space where patients could express themselves authentically. In shared belonging, confidential conversations with a nurse provided validation and relief from life\'s challenges. Experiences of feeling unheard or rejected by a nurse could intensify loneliness, prompting individuals to withdraw and remain silent. Regardless of the motives behind their choices, it was crucial that patients felt respect and validation in their decisions. Their autonomy could thus be recognised, and they felt empowered to make decisions based on their unique preferences.
CONCLUSIONS: Patients value trust and understanding, particularly in confidential conversations with nurses, which offer solace, validation and empowerment. However, indifference can increase patients\' suffering, fostering self-doubt and reluctance to engage further. To address this, health care can prioritise empathic communication skills, offer ongoing support to nurses, and promote continuity in care through investment in training and resources. Additionally, adopting a person-centred approach in confidential conversations is crucial, considering patients\' varying preferences.

BACKGROUND: In response to the rapid aging population and increasing number of cancer patients, discussions on dignified end-of-life (EoL) decisions are active around the world. Therefore, this study aimed to identify the differences in EoL care patterns between types of hospice used for cancer patients.
METHODS: In this population-based cohort study, the Korean National Health Insurance Service cohort data containing all registered cancer patients who died between 2017 and 2021 were used. A total of 408,964 individuals were eligible for analysis. The variable of interest, the type of hospice used in the 6 months before death, was classified as follows: (1) Non-hospice users; (2) Hospital-based hospice single users; (3) Home-based hospice single users; (4) Combined hospice users. The outcomes were set as patterns of care, including intense care and supportive care. To identify differences in care patterns between hospice types, a generalized linear model with zero-inflated negative binomial distribution was applied.
RESULTS: Hospice enrollment was associated with less intense care and more supportive care near death. Notably, those who used combined hospice care had the lowest probability and frequency of receiving intense care (aOR: 0.18, 95% CI: 0.17-0.19, aRR: 0.47, 95% CI: 0.44-0.49), while home-based hospice single users had the highest probability and frequency of receiving supportive care (Prescription for narcotic analgesics, aOR: 2.95, 95% CI: 2.69-3.23, aRR: 1.45, 95% CI: 1.41-1.49; Mental health care, aOR: 3.40, 95% CI: 3.13-3.69, aRR: 1.35, 95% CI: 1.31-1.39).
CONCLUSIONS: Our findings suggest that although intense care for life-sustaining decreases with hospice enrollment, QoL at the EoL actually improves with appropriate supportive care. This study is meaningful in that it not only offers valuable insight into hospice care for terminally ill patients, but also provides policy implications for the introduction of patient-centered community-based hospice services.

In the German context, research is lacking on the support experiences and unmet needs of informal caregivers in end-of-life situations who are geographically distanced from their ill relatives. The current study aimed at deepening our understanding of the specific end-of-life support experiences and needs of informal long-distance caregivers. The study employed an explorative design, applying qualitative interviews. Thirty-three long-distance family caregivers participated in the study (December 2021-October 2022). The results showed that long-distance caregivers relied on close exchange and cooperation with local family and non-kin caregivers. They also expressed the wish to be considered more proactively by professional caregivers, with respect to their specific geographic situations. They further recommended that local care networks be built to support patients. Hypotheses were deduced from long-distance caregivers\' recommendations for support interventions. The results may be useful for the development of an online information resource for long-distance caregivers in end-of-life situations.

Background: Music therapy (MT) offers benefits of improved symptom relief and quality of life at the end of life, but its impact on hospice patients and caregivers needs more research. Objective: To assess the impact of MT intervention on symptom burden and well-being of hospice patients and caregivers. Methods: A total of 18 hospice patients, selected based on scores ≥4 on the revised Edmonton Symptom Assessment System (ESAS-r) items on pain, depression, anxiety, or well-being, participated in MT sessions provided by a board-certified music therapist. Over a period of 2-3 weeks, 3-4 MT sessions were conducted for each. Patient Quality of life (QOL) was assessed using the Linear Analogue Self-Assessment (LASA). Depression and anxiety were measured with the Patient Health Questionnaire-4 (PHQ-4). For the 7 caregivers enrolled, stress levels were measured using the Pearlin role overload measure and LASA. Results: Patients reported a reduction in symptom severity and emotional distress and an increase in QOL. All patients endorsed satisfaction with music therapy, describing it as particularly beneficial for stress relief, relaxation, spiritual support, emotional support, and well-being. Scores on overall QOL and stress were worse for caregivers. Conclusion: This study provides evidence that MT reduces symptom burden and enhances the quality of life for hospice patients. Hospice patients and their caregivers endorsed satisfaction with MT. Given the benefits observed, integrating MT into hospice care regimens could potentially improve patient and caregiver outcomes. Larger studies should be conducted to better assess the impact of MT in this population.

BACKGROUND: Several studies deal with the question of what constitutes a \"satisfactory death\". A smaller number of studies deal with unsatisfactory dying processes. And only a few shed light on unsatisfactory deaths that take place in hospices and palliative care units, which see themselves as places conducive to a \"good\" death. What also remains largely undiscussed are the ethical aspects that accompany the observation of an unsatisfactory course of death.
METHODS: The research was carried out as an exploratory and qualitative study. The data collection and analysis were based on the methods of the \"grounded theory\".
RESULTS: Notions of a bad death are articulated here, though hardly by the affected persons and their relatives themselves, but rather by the professionals. Principally, descriptions of unsatisfactory dying processes refer to deficient success in symptom control, whereby the principle of autonomy is of particular importance. The focus here is not only on the needs of patients, but also on the needs of staff. The manifestation of such notions is related to the requirements arising from a practice that apparently evokes a need for accountability in the form of communicative reassurance.
CONCLUSIONS: An idealised definition of \"dying well\" is in danger of losing sight of the contextual specifics of the practice involved, which can lead to ethically problematic situations.