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Background: Effective medication management is crucial for ensuring timely pain and symptom control at the end of life. Dying in pain is a major concern for patients, yet some find less effective pain control at home. Family caregivers (FCGs) play a vital role in managing pain and symptom control for dying patients. However, the experience of administering medications at home for terminal-stage patients has not been widely recognized or understood. Our study aimed to explore the experiences of FCGs in administering medications to adult dying patients. Methods: We conducted a directed content analysis of data from 73 semi-structured interviews with FCGs across 19 Chinese provinces from 2021 to 2023. FCGs were recruited through the Voluntary Cooperative Network Research. We asked, "Could you recall the end-of-life care process for the patients?" We aligned the themes with the five issues identified by Wilson et al. (2018): administration, organizational skills, empowerment, relationships, and support. Results: FCGs in China exhibit concerns about over-engagement and empowerment in medication administration, concealing medication information from the patient, and medication accessibility. FCGs faced significant challenges in accurately identifying and addressing pain and symptoms, determining appropriate dosages, accessing effective medications, and managing the emotional stress associated with potential medication errors. Financial burden, medication regulatory restrictions, geographical inequality, and travel restrictions during COVID impeded patients and FCGs from accessing medication. A culturally specific finding is the use of alternative medicine at the end of life. Conclusion: Our findings build upon Wilson et al.'s framework and extend their insights on empowerment, highlighting the need for policies to support home-based palliative care professionals in training FCGs for effective medication administration. [ABSTRACT FROM AUTHOR]

Background: Through advocacy initiatives such as roadshows during "National ACP Week", the Agency for Integrated Care (AIC) had increased advance care planning (ACP) engagement since 2011. Project Happy Apples (PHA), a community initiative project led by medical students from the National University of Singapore, also conducted a public exhibition to raise ACP awareness during this period. This study aimed to investigate and identify predictors of attitudes towards ACP documentation among 'ACP Week' respondents which may be used to formulate strategies to increase ACP documentation in Singapore. Methods: A cross-sectional study on ACP documentation attitudes of 262 respondents during local roadshows were conducted. Multiple logistic regression models were built to investigate the associations between demographic variables and attitudes toward ACP documentation. Results: The mean age was 43.5 years (SD = 17.4), 79 (30.15%) were males and 49 (18.7%) were healthcare professionals (HCP). 117 (44.66%) respondents had prior experience with serious illness and 116 (44.27%) had heard of ACP. Age was a significant predictor of readiness to sign official papers naming nominated healthcare spokesperson (NHS) (OR = 1.04, 95%CI: 1.02–1.07). Experience with serious illness was a significant predictor of readiness to discuss end-of-life (EOL) care with healthcare professionals (HCP) (OR = 3.65, 95%CI: 1.36–11.61). Being female was a significant predictor for readiness to speak to their nominated healthcare spokesperson about EOL care (OR = 7.33, 95%CI: 2.06–46.73). Subgroup analyses revealed that those aged 20–39 were less likely to speak to their healthcare professional about or sign official papers regarding EOL care. We also found that being a healthcare professional does not necessitate better or worse attitudes. Conclusion: Advocacy programs tailored to targeting respondents of different age groups and prior experience with serious illness may improve the efficacy of advocacy efforts. [ABSTRACT FROM AUTHOR]

Background: Journeying with patients throughout their cancer trajectory and caring for them at the end of life can lead to emotional and moral distress in oncologists, negatively impacting their personal and professional identities. A better understanding of how transitions in care goals affect oncologists can shed light on the challenges faced and the support required. This study explored the impact of care transitions on oncologists' professional identity formation (PIF). Methods: From September to December 2023, semi-structured interviews were conducted with oncologists in a palliative care center in Singapore. The Ring Theory of Personhood (RToP) was used as a framework to capture the effects of experiences with patients transitioning from curative to palliative care on the oncologists' sense of self and identity. Data were analyzed using both inductive and deductive qualitative analysis. Results: Participants included six female and six male physicians, aged 30 to 53 years (mean 38 years), with an average of 9.75 years of experience as oncologists. The main domains identified were 1) challenges faced in transitioning patients to palliative care, 2) the impact of dealing with dying patients on oncologists, and 3) coping mechanisms. Conclusion: Oncologists experience self-doubt and moral distress as they manage transitions in care. The PIF of oncologists can be supported through reflection and introspection, peer support, and interventions to promote self-care — ultimately enabling them to make meaning of their experiences, renew family ties, and reaffirm their commitment to the profession. [ABSTRACT FROM AUTHOR]

Background: French laws governing end-of-life medical practices forbid euthanasia and affirm patients' right to deep and continuous sedation until death. Cultural traditions and disparities in health care provision, as in overseas France, could limit the enforcement of such laws and modify end-of-life medical practices. Aim: This research aims to describe end-of-life medical decisions in overseas France and to compare with those described in mainland France. Methods: A retrospective study of a random sample of adult patients who died between March 2020 and February 2021 was conducted in four overseas French departments. Physicians who certified the deaths were asked to describe end-of-life care and medical decisions in a questionnaire. Results: A total of 1815 deaths were analysed over 8730 questionnaires sent. Withholding treatments was the most frequent decision (41%), treatment for pain or symptoms was intensified for a third of patients, Deep and continuous sedation until death was implemented in 13.3% cases. The use of drugs to deliberately end life was mentioned in 1.3% deaths. At least one decision was made in 61.6% deaths. More decisions that may hasten death were made before predictable deaths. Intensification of pain and symptoms treatment was more frequent in 2022 than in 2010. Deep and continuous sedation was introduced by law in 2016 without prejudice to other decisions. Conclusion: Physicians in overseas France have implemented recent changes in end-of-life laws, including deep and continuous sedation. Comparisons with 2010 mainland France survey show a better implementation of palliative medicine in 2022, with higher proportions of treatment withholding. [ABSTRACT FROM AUTHOR]

Background: While home is frequently expressed as the favorite place of death (PoD) among terminally ill cancer patients, various factors affect the fulfillment of this wish. The determinants of the PoD of cancer patients in countries without healthcare system-integrated palliative and supportive care have not been studied before. This study aimed at identifying the predictors of the PoD of patients who suffer from advanced cancer by developing a reliable predictive model among who received home-based palliative care in Iran as a representative of the countries with isolated provision of palliative care services. Methods: In a cross-sectional study, electronic records of 4083 advanced cancer patients enrolled in the Iranian Cancer Control Center (MACSA) palliative homecare program, who died between February 2018 and February 2020 were retrieved. Multivariable binary logistic regression analysis as well as subgroup analyses (location, sex, marital status, and tumor topography) was performed to identify the predictors of PoD. Results: Of the 2398 cases included (mean age (SD) = 64.17 (14.45) year, 1269 (%52.9) male), 1216 (50.7%) patients died at home. Older age, presence and intensity of medical homecare in the last two weeks and registration in the Tehran site of the program were associated with dying at home (P < 0.05). Gynecological or hematological cancers, presence and intensity of the calls received from the remote palliative care unit in the last two weeks were predictors of death at the hospital (p < 0.05). The model was internally and externally validated (AUC = 0.723 (95% CI = 0.702–0.745; P < 0.001) and AUC = 0.697 (95% CI = 0.631–0.763; P < 0.001) respectively). Conclusion: Our model highlights the demographic, illness-related and environmental determinants of the PoD in communities with patchy provision of palliative care. It also urges policymakers and service providers to identify and take the local determinant of the place of death into account to match the goals of palliative and supportive services with the patient preferences. [ABSTRACT FROM AUTHOR]

Abstract Background While home is frequently expressed as the favorite place of death (PoD) among terminally ill cancer patients, various factors affect the fulfillment of this wish. The determinants of the PoD of cancer patients in countries without healthcare system-integrated palliative and supportive care have not been studied before. This study aimed at identifying the predictors of the PoD of patients who suffer from advanced cancer by developing a reliable predictive model among who received home-based palliative care in Iran as a representative of the countries with isolated provision of palliative care services. Methods In a cross-sectional study, electronic records of 4083 advanced cancer patients enrolled in the Iranian Cancer Control Center (MACSA) palliative homecare program, who died between February 2018 and February 2020 were retrieved. Multivariable binary logistic regression analysis as well as subgroup analyses (location, sex, marital status, and tumor topography) was performed to identify the predictors of PoD. Results Of the 2398 cases included (mean age (SD) = 64.17 (14.45) year, 1269 (%52.9) male), 1216 (50.7%) patients died at home. Older age, presence and intensity of medical homecare in the last two weeks and registration in the Tehran site of the program were associated with dying at home (P

Abstract Background Most nursing home residents have complex care needs, require palliative care and eventually die in these facilities. Timely recognition of changes in a resident’s condition is crucial for providing appropriate care. Observations by nursing staff play a significant role in identifying and interpreting these changes. Methods Focus group discussions were conducted with nursing staff from ten nursing homes in the Netherlands to explore their experiences and challenges in recognizing and discussing changes in a resident’s condition. These discussions were analysed following the principles of thematic analysis. Results The analysis of the challenges nursing staff face in identifying and interpreting changes in a resident’s condition, resulted in three themes. First, that recognizing changes is considered complex, because it requires specialized knowledge and skills that is generally not part of their education and must partly be learned in practice. This also depends on how familiar the nursing staff is with the resident. Furthermore, different people observe residents through different lenses, depending on their relation and experiences with residents. This could lead to disagreements about the resident’s condition. Lastly, organizational structures such as the resources available to document and discuss a resident’s condition and the hierarchy between nursing home professionals often hindered discussions and sharing observations. Conclusion Nursing staff’s experiences highlight the complexity of recognizing and discussing changes in nursing home residents’ conditions. While supporting the observational skills of nursing staff is important, it is not enough to improve the quality of care for nursing home residents with palliative care needs. As nursing staff experiences challenges at different, interrelated levels, improving the process of recognizing and discussing changes in nursing home residents requires an integrated approach in which the organization strengthens the position of nursing staff. It is important that their observations become a valued and integrated and part of nursing home care.

Abstract Background The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework. Methods A multi-stage qualitative methodology involving four stages of data collection: (1) case study interviews, (2) focus groups, (3) interactive workshops, and (4) Evidence Cafés. From initial interviews, ongoing thematic data analysis informed the design and focus of subsequent stages as part of a process of knowledge transfer. Results A practical resource to support service provision and development was produced; a grab-and-go guide called “Small Steps, Big Visions”. It focuses on the eight foundations in the Ambitions Framework, with additional guidance on collaboration and partnership working, and sharing learning. Each foundation is presented with a ‘what’ (definition), ‘ask’ (prompt questions), and ‘examples in action’ (drawn from case studies). Conclusions Research can contribute to policy implementation to advance palliative and end of life care. The engagement and input of those responsible for implementation is key.

Background: Despite increasing interest in quality end-of-life care (EOLC), critically ill patients often receive suboptimal care. Critical care nurses play a crucial role in EOLC, but face numerous barriers that hinder their ability to provide compassionate and effective care. Methods: An integrative literature review was conducted to investigate barriers impacting the quality of end-of-life care. This review process involved searching database like MEDLINE, Cochrane Central Register of Controlled Trials, CINAHL, EBSCO, and ScienceDirect up to November 2023. Search strategies focused on keywords related to barriers in end-of-life care and critical care nurses from October 30th to November 10th, 2023. The inclusion criteria specified full-text English articles published between 2010 and 2023 that addressed barriers perceived by critical care nurses. This integrative review employs an integrated thematic analysis approach, which combines elements of deductive and inductive analysis, to explore the identified barriers, with coding and theme development overseen by the primary and secondary authors. Results: Out of 103 articles published, 11 articles were included in the review. There were eight cross-sectional descriptive studies and three qualitative studies, which demonstrated barriers affecting end-of-life care quality. Quality appraisal using the Mixed Method Appraisal Tool was completed by two authors confirmed the high credibility of the selected studies, indicating the presence of high-quality evidence across the reviewed articles. Thematic analysis led to the three main themes (1) barriers related to patients and their families, (2) barriers related to nurses and their demographic characteristics, and (3) barriers related to health care environment and institutions. Conclusion: This review highlights barriers influencing the quality of end of life care perceived by critical care nurses and the gaps that need attention to improve the quality of care provided for patients in their final stages and their fsmilies within the context of critical care. This review also notes the need for additional research to investigate the uncover patterns and insights that have not been fully explored in the existing literature to enhance understanding of these barriers. This can help to inform future research, care provision, and policy-making. Specifically, this review examines how these barriers interact, their cumulative impact on care quality, and potential strategies to overcome. [ABSTRACT FROM AUTHOR]

Background: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. Aim: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. Design: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. Setting/participants: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. Results: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59–4.97, p = 0.33; large – aOR 0.65, 95% CI 0.18–2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. Conclusion: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes. [ABSTRACT FROM AUTHOR]

Background: Oral fluid intake decreases in advanced cancer in the dying phase of illness. There is inadequate evidence to support the assessment, and management, of hydration in the dying. Bioelectrical impedance analysis (BIA) is a body composition assessment tool. BIA has the potential to inform clinal management in advanced cancer, by examining the relationships between hydration status and clinical variables. Aim: BIA was used to determine the association between hydration status, symptoms, clinical signs, quality-of-life and survival in advanced cancer, including those who are dying (i.e. in the last week of life). Materials and methods: We conducted a prospective observational study of people with advanced cancer in three centres. Advance consent methodology was used to conduct hydration assessments in the dying. Total body water was estimated using the BIA Impedance index (Height – H (m)2 /Resistance – R (Ohms)). Backward regression was used to identify factors (physical signs, symptoms, quality of life) that predicted H2/R. Participants in the last 7 days of life were further assessed with BIA to assess hydration changes, and its relationship with clinical outcomes. Results: One hundred and twenty-five people participated (males n = 74 (59.2%), females, n = 51 (40.8%)). We used backward regression analysis to describe a statistical model to predict hydration status in advanced cancer. The model demonstrated that 'less hydration' (lower H2/R) was associated with female sex (Beta = -0.39, p < 0.001), increased appetite (Beta = -0.12, p = 0.09), increased dehydration assessment scale score (dry mouth, dry axilla, sunken eyes - Beta = -0.19, p = 0.006), and increased breathlessness (Beta = -0.15, p = 0.03). 'More hydration' (higher H2/R) was associated with oedema (Beta = 0.49, p < 0.001). In dying participants (n = 18, 14.4%), hydration status (H2/R) was not significantly different compared to their baseline measurements (n = 18, M = 49.6, SD = 16.0 vs. M = 51.0, SD = 12.1; t(17) = 0.64, p = 0.53) and was not significantly associated with agitation (rs = -0.85, p = 0.74), pain (rs = 0.31, p = 0.23) or respiratory tract secretions (rs = -0.34, p = 0.19). Conclusions: This is the first study to use bioimpedance to report a model (using clinical factors) to predict hydration status in advanced cancer. Our data demonstrates the feasibility of using an advance consent method to conduct research in dying people. This method can potentially improve the evidence base (and hence, quality of care) for the dying. Future BIA research can involve hydration assessment of cancers (according to type and stage) and associated variables (e.g., stage of illness, ethnicity and gender). Further work can use BIA to identify clinically relevant outcomes for hydration studies and establish a core outcome set to evaluate how hydration affects symptoms and quality-of-life in cancer. Key message: What is already known about this topic? - Oral fluid intake decreases in people with advanced cancer, especially when they approach the dying phase of their illness. - There is inadequate evidence to support hydration assessment and decision making in the dying phase of illness. - It is important to understand which clinical factors are associated with hydration status in advanced cancer, to enable healthcare professionals, to evaluate hydration status and support clinical decision making. - Bioimpedance is a non-invasive technology, which has potential to identify clinically relevant variables for cancer hydration assessment. What this paper adds. - This is the first study to use bioimpedance to report a model (using clinical factors) to predict hydration status in advanced cancer. - The variables with combined significance for predicting hydration status were biological sex, appetite, dry mouth, dry axilla, sunken eyes, breathlessness and oedema. In the dying phase, hydration status did not significantly change compared to baseline, and hydration status was not significantly associated with survival. Implications for practice, theory or policy. - Further work can use bioimpedance to identify clinically relevant outcomes for hydration studies, to establish a core outcome set to evaluate how hydration affects symptoms and quality-of-life in cancer. [ABSTRACT FROM AUTHOR]

Background: Withholding or withdrawing life-sustaining treatment in end-of-life patients is a challenging ethical issue faced by physicians. Understanding physicians' experiences and factors influencing their decisions can lead to improvement in end-of-life care. Objectives: To investigate the experiences of Thai physicians when making decisions regarding the withholding or withdrawal of life-sustaining treatments in end-of-life situations. Additionally, the study aims to assess the consensus among physicians regarding the factors that influence these decisions and to explore the influence of families or surrogates on the decision-making process of physicians, utilizing case-based surveys. Methods: A web-based survey was conducted among physicians practicing in Chiang Mai University Hospital (June - October 2022). Results: Among 251 physicians (response rate 38.3%), most of the respondents (60.6%) reported that they experienced withholding or withdrawal treatment in end-of-life patients. Factors that influence their decision-making include patient's preferences (100%), prognosis (93.4%), patients' quality of life (92.8%), treatment burden (89.5%), and families' request (87.5%). For a chronic disease with comatose condition, the majority of the physicians (47%) chose to continue treatments, including cardiopulmonary resuscitation (CPR). In contrast, only 2 physicians (0.8%) would do everything, in cases when families or surrogates insisted on stopping the treatment. This increased to 78.1% if the families insisted on continuing treatment. Conclusion: Withholding and withdrawal of life-sustaining treatments are common in Thailand. The key factors influencing their decision-making process included patient's preferences and medical conditions and families' requests. Effective communication and early engagement in advanced care planning between physicians, patients, and families empower them to align treatment choices with personal values. [ABSTRACT FROM AUTHOR]

Background: Person-centred care is becoming increasingly recognised as an important element of palliative care. The current review syntheses evidence in relation to transitions in advanced cancer patients with palliative care needs. The review focuses on specific elements which will inform the Pal-Cycles programme, for patients with advanced cancer transitioning from hospital care to community care. Elements of transitional models for cancer patients may include, identification of palliative care needs, compassionate communication with the patient and family members, collaborative effort to establish a multi-dimensional treatment plan, review and evaluation of the treatment plan and identification of the end of life phase. Methods: A scoping review of four databases (MEDLINE, EMBASE, CINAHL, PsycINFO) was conducted to identify peer-reviewed studies published from January 2013 to October, 2022. A further hand-search of references to locate additional relevant studies was also undertaken. Inclusion criteria involved cancer patients transitions of care with a minimum of two of components from those listed above. Studies were excluded if they were literature reviews, if transition of care was related to cancer survivors, involved non-cancer patients, had paediatric population, if the transition implied a change of therapy and or a lack of physical transit to a non-hospital place of care. This review was guided by Arksey and O'Malley's framework and narrative synthesis was used. Results: Out of 5695 records found, 14 records were selected. Transition models identified: increases in palliative care consultations, hospice referrals, reduction in readmission rates and the ability to provide end of life care at home. Transition models highlight emotional and spiritual support for patients and families. No uniform model of transition was apparent, this depends on the healthcare system where it is implemented. Conclusions: The findings highlight the importance of collaboration, coordination and communication as central mechanisms for transitional model for patients with advanced cancer. This may require careful planning and will need to be tailored to the contexts of each healthcare system. [ABSTRACT FROM AUTHOR]

Background: Heart failure (HF) is a debilitating disease with worsening symptoms and family caregiving burden. HF affects more than 8 million Americans. West Virginia has the highest HF death rate in the U.S. and limited healthcare services. This study tested whether the family HF palliative and end-of-life care intervention (FamPALcare) improved patient and caregiver outcomes at 3- and 6-month study endpoints. Methods: This study used a randomized controlled trial design. Patients with HF and their caregivers were randomly assigned together to the intervention (n = 21) or control (n = 18) group. The intervention included five telephone coaching sessions on the HF home, palliative, and end-of-life care. The outcome data collected at baseline and at 3 and 6 months were from the patients' (a) HF-related health status and depression/anxiety scale scores; and from caregivers' (b) caregiving burden and depression/anxiety scale scores; and (c) anonymous ratings on the 11-item FamPALcare helpfulness scale, completed by the intervention participants. Results: The mean age of the patients was 65.66 (SD = 13.72) years, and 67% were White males. The mean age of the caregivers was 62.05 (SD = 13.14) years, and 77% were White females. Compared to the controls, patients in the intervention group had significantly greater scores for HF-related health status (p <.05) and lower depression/anxiety scores at 6 months, the study endpoint. The family caregivers in the intervention group had significantly lower scores on caregiving burden (p <.05) and depression/anxiety (p <.01) at 3 months. The mean helpfulness rating was M = 4.46 out of 5 (SD = 0.49). Conclusions: The FamPALcare intervention was found to be effective at improving patient HF-related health status and reducing caregiver burden and improving both patient and caregiver depression and anxiety scores. The FamPALcare HF intervention was found feasible and consistently delivered (fidelity). The FamPALcare intervention's cost-effectiveness and helpfulness ratings information will be used to plan for subsequent clinical trials. Trial registration: ClinicalTrials.gov NCT04153890, Registered on 4 November 2019, https://clinicaltrials.gov/ct2/show/NCT04153890. [ABSTRACT FROM AUTHOR]

Background: Deaths in paediatric intensive care units (PICUs) are not uncommon. End-of-life care in PICUs is generally considered more challenging than other settings since it is framed within a context where care is focused on curative or life-sustaining treatments for children who are seriously ill. This review aimed to identify and synthesise literature related to the essential elements in the provision of end-of-life care in the PICU from the perspectives of both healthcare professionals (HCPs) and families. Methods: A systematic integrative review was conducted by searching EMBASE, CINAHL, MEDLINE, Nursing and Allied Health Database, PsycINFO, Scopus, Web of Science, and Google Scholar databases. Grey literature was searched via Electronic Theses Online Service (EthOS), OpenGrey, Grey literature report. Additionally, hand searches were performed by checking the reference lists of all included papers. Inclusion and exclusion criteria were used to screen retrieved papers by two reviewers independently. The findings were analysed using a constant comparative method. Results: Twenty-one studies met the inclusion criteria. Three elements in end-of-life care provision for children in the PICUs were identified: 1) Assessment of entering the end-of-life stage; 2) Discussion with parents and decision making; 3) End of life care processes, including care provided during the dying phase, care provided at the time of death, and care provided after death. Conclusion: The focus of end-of-life care in PICUs varies depending on HCPs' and families' preferences, at different stages such as during the dying phase, at the time of death, and after the child died. Tailoring end-of-life care to families' beliefs and rituals was acknowledged as important by PICU HCPs. This review also emphasises the importance of HCPs collaborating to provide the optimum end-of-life care in the PICU and involving a palliative care team in end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Ethnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage. This is a voice not well represented in the current debate on improving end-of-life outcomes. Methods: Using Charmaz's constructivist grounded theory approach, a purposive sample of elders, adult-children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted and analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction. Results: Elders (n = 4), adult-children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created. The constructs are (a) Preparing for death but not for dying (b) Complexity in traditions crosses oceans (c) Living and dying between cultures and traditions (d) There is culture, gender and there is personality (e) Watching the death of another prompts conversations. (f) An experience of Hysteresis. Discussion: African and Caribbean cultures celebrate preparation for after-death processes resulting in early exposure to and opportunities for discussion of these processes. Migration results in reforming of people's habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and related decision making. Conclusions: Recognising the impact of migration on the roles of different family members and the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families of minority ethic heritage facing serious illness. A public health approach focusing on enabling adult-children to have better end of life conversations with their parents can inform the development of culturally competent palliative care. [ABSTRACT FROM AUTHOR]

Background: Despite pain control being a top priority in end-of-life care, pain continues to be a troublesome symptom and comprehensive data on pain prevalence and pain relief in patients with different diagnoses are scarce. Methods: The Swedish Register of Palliative Care (SRPC) was used to retrieve data from 2011 to 2022 about pain during the last week of life. Data were collected regarding occurrence of pain, whether pain was relieved and occurrence of severe pain, to examine if pain differed between patients with cancer, heart failure, chronic obstructive pulmonary disease (COPD) and dementia. Binary logistic regression models adjusted for sex and age were used. Results: A total of 315 000 patients were included in the study. Pain during the last week of life was more commonly seen in cancer (81%) than in dementia (69%), heart failure (68%) or COPD (57%), also when controlled for age and sex, p < 0.001. Severe forms of pain were registered in 35% in patients with cancer, and in 17–21% in non-cancer patients. Complete pain relief (regardless of pain intensity) was achieved in 73–87% of those who experienced pain, depending on diagnosis. The proportion of patients with complete or partial pain relief was 99.8% for the whole group. Conclusions: The occurrence of pain, including severe pain, was less common in patients with heart failure, COPD or dementia, compared to patients with cancer. Compared with cancer, pain was more often fully relieved for patients with dementia, but less often in heart failure and COPD. As severe pain was seen in about a third of the cancer patients, the study still underlines the need for better pain management in the imminently dying. Trial registration: No trial registration was made as all patients were deceased and all data were retrieved from The Swedish Register of Palliative Care database. [ABSTRACT FROM AUTHOR]

Background: Despite the availability of guidance for the provision of good end-of-life care, there are significant variations across the UK in its delivery. This study sought to identify the influences on end-of-life treatment and care planning across several areas where deficiencies in evidence-based practice have been identified, and to develop consensus among healthcare providers and users for recommendations on how to address these deficits. Methods: An online survey (106 responses), qualitative interviews (55 participants) and a consensus-building exercise (475 participants in the initial round) were undertaken. Participants included people approaching the end of life, people important to them, and health and care practitioners who help people plan for the end of life or provide end-of-life care. Recruitment was via online methods, including social media and online newsletters of relevant charities and professional organisations. Thematic analysis using the framework method was used to analyse qualitative data. Synthesis of qualitative and quantitative data led to the development of statements regarding recommendations for advancing implementation of good practice. A two-stage consensus-building exercise asked respondents first to rate these statements and then to rate and rank further sub-recommendations in three areas. Results: Results from the consensus building exercise confirmed that end-of-life care planning conversations are to be welcomed and encouraged, and that the priority should be to have the conversation (which could be initiated by a range of professionals, or people planning end-of-life care themselves), rather than to wait for an ideal time to have it. Further rounds identified specific components of a standardised record of end-of-life treatment and care preferences that should be prioritised, specific health and care staff that should be empowered through training in advanced communication, and aspects of communication most important to include in training for healthcare professionals. Conclusions: Our study has identified opportunities for action to improve end-of-life treatment and care by combining multiple stakeholder perspectives and building consensus among them: the resulting recommendations have sufficient granularity to be implemented and evaluated. They are of relevance to policy makers, those who train healthcare professionals, and those looking after patients approaching the end of life. [ABSTRACT FROM AUTHOR]

Context: 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. Objectives: 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)). Conclusion: 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. [ABSTRACT FROM AUTHOR]

Background: The countries of the world are becoming increasingly multicultural and diverse, both as a result of growing migration, of people fleeing countries at war but also due to increased mobility related to labour immigration. Culture is a broad concept where the definitions focus on learned and shared values, traditions, and beliefs of a group of individuals. People's culture affects health and perceptions of illness as well as treatment, symptoms, and care. Moreover, people who are at the end of life, live and exist within all levels and contexts of care. Specialized palliative care requires that the nurse has sufficient knowledge and skills to be responsible for meeting the patient's nursing needs also on a cultural level, regardless of cultural affiliation. The aim of the study was to highlight nurses' experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care. Methods: The study was conducted with a qualitative design and inductive approach. Semi-structured interviews were conducted with twelve nurses in western Sweden. Data were analysed using qualitative content analysis. Results: The nurses had an awareness of culture as a phenomenon and how it affected palliative care at the end of life. The results showed two categories, Awareness of the impact of culture on nursing and Culture's impact and influence on the nurse's mindset and approach, consisting of seven subcategories that highlight the nurse's experience. It emerged that there are differences between cultures regarding notions of dying and death, who should be informed, and treatments. There were also challenges and emotions that arose when cultural preferences differed among everyone involved. A person-centred approach allowed for recognition of the dying person's culture, to meet diverse cultural needs and wishes. Conclusion: Providing culturally competent care is a major challenge. There are often no routines or methods prescribed for how nurses should relate to and handle the diversity of cultural notions that may differ from the values and cornerstones of palliative care. Having a person-centred approach as strategy can help to better manage the situation and provide equitable care on terms that respect cultural diversity. [ABSTRACT FROM AUTHOR]

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. Conclusion: The aggressiveness of EoL care in stage IV cancer patients showed an overall decrease during 2012–2018 in Korea. [ABSTRACT FROM AUTHOR]

Background: Advance care planning is a way of facilitating conversations with patients about future health care, values, and preferences at end of life. Nursing home physicians have the medical responsibility and the main obligation to facilitate planned meetings with patients. Although there has been a great deal of focus on establishing advance care planning in Norwegian nursing homes, it has yet to be widely implemented. Stated reasons are that the work routines in a nursing home do not include such meetings or that implementation seems complex due to frail patients. The aim of this study is thus to explore how physicians understand and experience advance care planning and follow-up of care plans in Norwegian nursing homes. Methods: The study has a qualitative research design with a phenomenological-hermeneutic approach based on interviews of twelve nursing home physicians working in community care. Interviews were conducted in February 2023 to May 2023, using a semi-structured interview guide. All interviews were recorded on audio files, transcribed, and analyzed using structural text analysis. Results: The findings are presented based on the following themes: (1) advance care planning is a dialog and a process, (2) advance care planning implies clarifying mutual expectations, and (3) advance care planning that brings relief and hope to patients is a medical art. Conclusions: Advance care planning is a complex and dynamic process that implies medical treatment, decisions on treatment level, pain relief, and formulation of care plans where the patient's self-determination and personal values are respected. It implies an ongoing dialogue between physicians, patients, and their relatives about values such as dignity, self-understanding, social relations, and existential questions at end of life. Advance care planning requires a holistic approach that meets patients' psychological and existential needs such as comfort, trust, hope, and respect as well as their preferences and concerns. [ABSTRACT FROM AUTHOR]

Background: Cancer is a disease that transcends what is purely medical, profoundly affecting the day-to-day life of both patients and family members. Previous research has shown that the consequences of cancer are greatly aggravated in patients at the end of life, at a time when they must also grapple with numerous unmet needs. The main objective of this study was to obtain more in-depth insight into these needs, primarily in patients with end-stage cancer nearing death. Methods: Semi-structured interviews were conducted in Spain with cancer patients at the end of life (n = 3) and their family members (n = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach. Results: Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance. Conclusions: A lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life. [ABSTRACT FROM AUTHOR]

Background: Only four centers in Egypt provide Palliative Care (PC) for adult cancer patients and one provides care for pediatric cancer patients. While PC is not widely utilized in Egypt, this study aims to assess patients' need for PC from the providers' perspective. The primary objectives were to assess providers' knowledge about PC, understand patients' needs, and compare children's and adults' needs for PC. Methods: A descriptive exploratory design was utilized. Patients were recruited from a cancer center in Qena Governorate, Egypt. All 108 nurses and physicians in the cancer center were interviewed to assess their perspectives about PC and patients' need for it. Results: Of the 108 care providers, more than 60% of the providers were not familiar with the concept of PC and did not participate in related activities, and more than 77% did not receive any training on the topic. All the providers reported there is no specific policy for end-of-life care. More than 60% of the providers responded that their patients do not need PC as the providers believe that PC provided only for end-stage patients. 50% of the providers see that PC has benefits such as pain relief and symptom management. No major differences were noted between pediatric and adult PC needs. Conclusion: The results of this study provide foundational evidence of providers' lack of experience with and understanding of palliative care. This deficit is creating a barrier to providing palliative care in Egypt. [ABSTRACT FROM AUTHOR]

Background: The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework. Methods: A multi-stage qualitative methodology involving four stages of data collection: (1) case study interviews, (2) focus groups, (3) interactive workshops, and (4) Evidence Cafés. From initial interviews, ongoing thematic data analysis informed the design and focus of subsequent stages as part of a process of knowledge transfer. Results: A practical resource to support service provision and development was produced; a grab-and-go guide called "Small Steps, Big Visions". It focuses on the eight foundations in the Ambitions Framework, with additional guidance on collaboration and partnership working, and sharing learning. Each foundation is presented with a 'what' (definition), 'ask' (prompt questions), and 'examples in action' (drawn from case studies). Conclusions: Research can contribute to policy implementation to advance palliative and end of life care. The engagement and input of those responsible for implementation is key. [ABSTRACT FROM AUTHOR]

Abstract Background In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. Aim The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. Methods In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. Results From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. Conclusions Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.

BackgroundInitially developed in the intensive care unit (ICU) at St. Joseph's Healthcare Hamilton (SJHH) the 3 Wishes Project (3WP) provides personalized, compassionate care to dying patients and their families. The objective of this study was to develop and evaluate 3WP expansion strategies for patients cared for on General Internal Medicine (GIM) wards in our hospital.MethodsFrom January 2020-November 2021, we developed a phased, multicomponent approach for program expansion. We enrolled patients on the GIM wards who had a high probability of dying in hospital, then elicited, implemented, and documented wishes for them or their families. Data were analyzed descriptively.ResultsFrom March 2020 to November 2020, we implemented staff education and engagement activities, created an Expansion Coordinator position, held strategic consultations, and offered enabling resources. From March 2020 to November 2021, we enrolled 62 patients and elicited 281 wishes (median [1st, 3rd quartiles] 4 [4, 5] wishes/patient). The most common wish categories were personalizing the environment (67 wishes, 24%), rituals and spiritual support (42 wishes, 15%), and facilitating connections (39 wishes, 14%). The median [1st, 3rd] cost/patient was $0 [0, $10.00] (range $0 to $86); 91% of wishes incurred no cost to the program.ConclusionsThe formal expansion of the 3WP on GIM wards has been successful despite COVID-19 pandemic disruptions. While there is still work ahead, these data suggest that implementing the 3WP on the GIM wards is feasible and affordable. Increased engagement of the clinical team during the pandemic suggests that it is positively received.

Introduction: The COVID-19 pandemic had a significant impact on care at the end-of-life due to restrictions and other circumstances such as high workload and uncertainty about the disease. The objective of this study is to describe the degree of various signs experienced by healthcare providers throughout the first 18 months of the pandemic and to assess what provider's characteristics and care circumstances related to COVID-19 are associated with distress. Methods: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic's first 18 months. Data of four time periods were analyzed using descriptive statistics, logistic regression analysis and Generalized Estimating Equation. Results: Of the respondents (n=302) the majority had a nursing background (71.8%) and most worked in a hospital (30.3%). Although reported distress was highest in the first period, during the first wave of COVID-19 pandemic, healthcare providers reported signs of distress in all four time periods. Being more stressed than usual and being regularly exhausted were the most common signs of distress. Healthcare providers working in nursing homes and hospitals were more likely to experience signs of distress, compared to healthcare providers working in hospice facilities, during the whole period of 1.5 years. When HCPs were restricted in providing post-death care, they were more likely to feel more stressed than usual and find their work more often emotionally demanding. Conclusion: A substantial amount of healthcare providers reported signs of distress during the first 1.5 years of the COVID-19 pandemic. A cause of distress appears to be that healthcare providers cannot provide the care they desire due the pandemic. Even though the pandemic is over, this remains an important and relevant finding, as high workload can sometimes force healthcare providers to make choices about how they provide care. Given that this can cause prolonged stress and this can lead to burnout (and HCPs leaving their current positions), it is now especially important to continue observing the long term developments of the well-being of our healthcare providers in palliative care and provide timely and adequate support where needed. [ABSTRACT FROM AUTHOR]

Objectives: To better understand the type of care offered to Italian patients with advanced breast cancer at the End-of-Life (EoL), we conducted a retrospective observational study. EoL was defined as the period of six months before death. Methods: One hundred and twenty-one patients with advanced breast cancer (ABC) treated at IRCCS San Martino Policlinic Hospital who died between 2017 and 2021 were included. Data about patient, disease, and treatment characteristics from breast cancer diagnosis to death, along with information about comorbidities, medications, imaging, specialist evaluations, hospitalization, palliative care and home care, hospice admissions, and site of death were collected. Results: 98.3% of the patients received at least one line of active treatment at EoL; 52.8% were hospitalized during the selected period. Palliative (13.9%), psychological (7.4%), and nutritional evaluations (8.2%) were underutilized. Palliative home care was provided to 52% of the patients. Most of the patients died at home (66.1%) and fewer than one out of five (18.2%) died at the hospital. Among the patients who died at home, 27.3% had no palliative support. Conclusions: Our findings indicate that palliative care in EoL breast cancer patients is still inadequate. Only a minority of patients had psychological and nutritional support While low nutritional support may be explained by the fact that typical symptoms of ABC do not involve the gastrointestinal tract, the lack of psychological support suggests that significant barriers still exist. Data on the site of death are encouraging, indicating that EoL management is increasingly home centered in Italy. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) describes the process of supporting individuals at any age or stage of health to consider and share their personal values, life goals, and preferences regarding future health care. Engaging in ACP is associated with better-quality of care in which people receive care in lines with their wishes, values and preferences. Direct translations of ACP guides and resources do not attend to the considerable inter- and intra-ethnic variations in cultural and religious or spiritual beliefs that shape preferences among people from culturally and linguistically diverse (CALD) backgrounds. ICanCarePlan is a three-year project that aims to determine the prevalence of ACP documentation among people from CALD backgrounds with cancer, identify resources available and their use to support ACP among CALD communities, identify barriers and facilitators of person-centred ACP, and to develop, through co-design with consumers and clinicians, approaches that enhance the process ACP for people from CALD backgrounds. Method: A mixed-method sequential approach will be used comprising of four studies. Study one is retrospective medical record review of approximately 1500 medical records to establish the prevalence of ACP documentation among CALD patient records in cancer services. Study two is a document analysis synthesising the resources available in the Australian health system to support ACP. Study three is a qualitative study with healthcare staff and consumers to explore barriers and enablers of person-centred ACP. Evidence generated from studies one to three will inform the conduct of co-design with stakeholders to develop approaches to improve ACP processes among CALD communities. Language, technical and financial support for meaningful involvement with consumers from CALD backgrounds throughout this project is outlined. A plan for distress management is also made due to sensitive nature of the topic. The research project has also established a project steering group consisting of three consumer members who are from CALD backgrounds. Discussion: The project will address a national priority issue for a growing population of CALD communities in Australia. The project will provide novel evidence of ACP among CALD communities and novel strategies developed with stakeholders to enhance uptake and experiences of ACP. [ABSTRACT FROM AUTHOR]

Background: Indigenous palliative persons and their families often have different values, spiritual traditions, and practices from Western culture and Canadian health systems. Additionally, many healthcare policies and practices have been established without adequate consultation of the Indigenous populations they are meant to serve. This can result in barriers to Innu receiving culturally safe end-of-life care. Innu community leaders from Sheshatshiu, Labrador, have identified a need for further research in this area. The purpose of this study is to: (1) describe the cultural and spiritual practices related to death and dying of the Innu in Sheshatshiu; (2) identify aspects of current end-of-life care delivery that serve and/or fail to meet the cultural and spiritual needs of the Innu in Sheshatshiu; and (3) explore ways to integrate current end-of-life care delivery practices with Innu cultural and spiritual practices to achieve culturally safer care delivery for the Innu. Methods: This qualitative patient-oriented research study was co-led by Innu investigators and an Innu advisory committee to conduct semi-structured interviews of 5 healthcare providers and 6 decision-makers serving the community of Sheshatshiu and a focus group of 5 Innu Elders in Sheshatshiu. Data was analyzed thematically from verbatim transcripts. The codebook, preliminary themes, and final themes were all reviewed by Innu community members, and any further input from them was then incorporated. Quotations in this article are attributed to Innu Elders by name at the Elders' request. Results: The findings are described using eight themes, which describe the following: relationships and visitation support a "peaceful death"; traditional locations of death and dying; the important role of friends and community in providing care; flexibility and communication regarding cultural practices; adequate and appropriate supports and services; culturally-informed policies and leadership; and Innu care providers and patient navigators. Conclusions: The Innu in Sheshatshiu have a rich culture that contributes to the health, care, and overall well-being of Innu people approaching end of life. Western medicine is often beneficial in the care that it provides; however, it becomes culturally unsafe when it fails to take Innu cultural and spiritual knowledge and traditions into account. [ABSTRACT FROM AUTHOR]

Background: In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. Aim: The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. Methods: In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. Results: From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. Conclusions: Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages. Key message: What is already known on this topic? • The SPICT™ was developed to assist clinicians to screen patients for palliative care needs. What this review found. • The SPICT™ assists conversations about advance care planning and facilitates changes in documented goals of care. • The SPICT™ is available in at least eight languages (and used in many countries. How the findings of this review may affect practice and research. • Evidence suggests that formalising screening for palliative care needs using the SPICT™ is advantageous for advance care planning; clinicians should consider using the SPICT™ to initiate discussions with people with life limiting conditions. • Further research is required to validate the tool in different languages and extend its use in acute care settings and with other patient cohorts. [ABSTRACT FROM AUTHOR]

Background: Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families. Methods: A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life. Results: Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to "live for the day" due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in 'selective decision-making' related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make 'timely decisions' as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often 'defaulted' to others, especially once capacity was lost. 'Proactive decisions', including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options. Conclusions: The study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND. [ABSTRACT FROM AUTHOR]

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). Conclusion: 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. [ABSTRACT FROM AUTHOR]

Background: The Hospice and Palliative Care Act of 2015 aimed at developing and regulating the provision of palliative care (PC) services in Germany. As a result of the legal changes, people with incurable diseases should be enabled to experience their final stage of life including death according to their own wishes. However, it remains unknown whether the act has impacted end-of-life care (EoLC) in Germany. Objective: The present study examined trends in EoLC indicators for patients who died between 2016 and 2020, in the context of Lower Saxony, Germany. Methods: Repeated cross-sectional analysis was conducted on data from the statutory health insurance fund AOK Lower Saxony (AOK-LS), referring to the years 2016–2020. EoLC indicators were: (1) the number of patients receiving any form of outpatient PC, (2) the number of patients receiving generalist outpatient PC and (3) specialist outpatient PC in the last year of life, (4) the onset of generalist outpatient PC and (5) the onset of specialist outpatient PC before death, (6) the number of hospitalisations in the 6 months prior to death and (7) the number of days spent in hospital in the 6 months prior to death. Data for each year were analysed descriptively and a comparison between 2016 and 2020 was carried out using t-tests and chi-square tests. Results: Data from 160,927 deceased AOK-LS members were analysed. The number of patients receiving outpatient PC remained almost consistent over time (2016 vs. 2020 p =.077). The number of patients receiving generalist outpatient PC decreased from 28.4% (2016) to 24.5% (2020; p <.001), whereas the number of patients receiving specialist outpatient PC increased from 8.5% (2016) to 11.2% (2020; p <.001). The onset of generalist outpatient PC moved from 106 (2016) to 93 days (2020; p <.001) before death, on average. The onset of specialist outpatient PC showed the reverse pattern (2016: 55 days before death; 2020: 59 days before death; p =.041). Conclusion: Despite growing needs for PC at the end of life, the number of patients receiving outpatient PC did not increase between 2016 and 2020. Furthermore, specialist outpatient PC is being increasingly prescribed over generalist outpatient PC. Although the early initiation of outpatient PC has been proven valuable for the majority of people at the end of life, generalist outpatient PC was not initiated earlier in the disease trajectory over the study period, as was found to be true for specialist outpatient PC. Future studies should seek to determine how existing PC needs can be optimally met within the outpatient sector and identify factors that can support the earlier initiation of especially generalist outpatient PC. Trial registration: The study "Optimal Care at the End of Life" was registered in the German Clinical Trials Register (DRKS00015108; 22 January 2019). [ABSTRACT FROM AUTHOR]

Background: The practice of continuous palliative sedation until death is the subject of much medical and ethical debate, which is reflected in the inconsistency that persists in the literature regarding the definition and indications of palliative sedation. Aim: This study aims to gain a better understanding of palliative care clinicians' experiences with continuous palliative sedation. Design: We conducted a qualitative study based on focus group discussions. Setting/participants: We conducted six focus groups with a total of 28 palliative care clinicians (i.e., 15 nurses, 12 physicians, and 1 end-of-life doula) from diverse care settings across Canada, where assisted dying has recently been legalized. Results: An interpretative phenomenological analysis was used to consolidate the data into six key themes: responding to suffering; grappling with uncertainty; adapting care to ensure ongoing quality; grounding clinical practice in ethics; combining medical expertise, relational tact, and reflexivity; and offering an alternative to assisted death. Conclusions: Interaction with the patient's family, uncertainty about the patient's prognosis, the concurrent practice of assisted dying, and the treatment of existential suffering influence the quality of sedation and indicate a lack of clear palliative care guidelines. Nevertheless, clinicians exhibit a reflective and adaptive capacity that can facilitate good practice. [ABSTRACT FROM AUTHOR]

Background: Advanced cancer patients with good Eastern Cooperative Oncology Group (ECOG) performance status (score 0–1) are underrepresented in current qualitative reports compared with their dying counterparts. Aim: To explore the experiences and care needs of advanced cancer patients with good ECOG. Design: A qualitative phenomenological approach using semi-structured interview was employed. Data was analyzed using the Colaizzi's method. Setting/Participants: Purposive sample of terminal solid cancer patients on palliative care aged 18–70 years with a 0–1 ECOG score were recruited from a tertiary general hospital. Results: Sixteen participants were interviewed. Seven themes were generated from the transcripts, including experiencing no or mild symptoms; independence in self-care, decision-making, and financial capacity; prioritization of cancer growth suppression over symptom management; financial concerns; hope for prognosis and life; reluctance to discuss death and after-death arrangements; and use of complementary and alternative medicine (CAM) and religious coping. Conclusions: Advanced cancer patients with good ECOG have distinct experiences and care needs from their dying counterparts. They tend to experience no or mild symptoms, demonstrate a strong sense of independence, and prioritize cancer suppression over symptom management. Financial concerns were common and impact their care-related decision-making. Though being hopeful for their prognosis and life, many are reluctant to discuss death and after-death arrangements. Many Chinese patients use herbal medicine as a CAM modality but need improved awareness of and accessibility to treatment options. Healthcare professionals and policy-makers should recognize their unique experiences and needs when tailoring care strategies and policies. Key statements: What is already known about the topic? • Even in their advanced stage, cancer patients with good ECOG performance status are capable of self-care and less reliant on care provided by other. • Existing qualitative research mainly focuses on advanced cancer patients with poor ECOG, emphasizing pain management, emotional distress, and palliative care. What this paper adds? • Our findings reveal distinct experiences and care needs of advanced cancer patients with good ECOG performance status from their dying counterparts. Implications for practice, theory or policy. • Healthcare professionals should recognize and address the patient group's distinct needs. • Future research should further investigate their symptom trajectory, influencing factors, and care needs to fill the gap in their cancer journey. • Policy-makers should develop tailored policies that consider good ECOG performance status. [ABSTRACT FROM AUTHOR]

Harmful use of illicit drugs and/or alcohol is linked to life-limiting illness and complex health and social care needs, but people who use substances and have complex needs do not receive timely palliative care and fail to achieve quality standards for a good death. They and their families often require support from multiple health and social care services which are shown to be poorly integrated and fail to deliver interdisciplinary care. This study aimed to identify the existing barriers and facilitators within and between services in providing this population with a good death. Using a mixed methods approach of survey, focus groups and semi-structured interviews, we explored the perspectives of practitioner and management staff across a range of health and social disciplines and organisations in one combined authority in a large city in the north west of England. Our findings indicate that practitioners want to provide better care for this client group, but face structural, organisational and professional boundary barriers to delivering integrated and shared care. Differences in philosophy of care, piecemeal commissioning and funding of services, and regulatory frameworks for different services, lead to poor and inequitable access to health and social care services. Ways forward for improving care are suggested as bespoke hostel-based accommodation for palliative care for this client group, and specialist link workers who can transcend professional and organisational boundaries to support co-ordination of services and support. We conclude that it is no longer adequate to call for more training, better communication and improved joint working. Complex care at the end of life requires creative and cohesive systemic responses that enable multi-disciplinary practitioners to provide the care they wish to give and enables individuals using substances to get the respect and quality service they deserve. [ABSTRACT FROM AUTHOR]

Background: As many patients are spending their last days in critical care units, it is essential that they receive appropriate end-of -life care. However, cultural differences, ethical dilemmas and preference practices can arise in the intensive care settings during the end of life. Limiting therapy for dying patients in intensive care is a new concept with no legal definition and therefore there may be confusion in interpreting the terms 'no resuscitation' and 'comfort care' among physicians in Middle East. Therefore, the research question is 'What helps or hinders effective end-of-life care in adult intensive care units in Middle Eastern countries?' Methods: The authors conducted a comprehensive systematic literature review using five electronic databases. We identified primary studies from Medline, Embase, CINAHL, Psycinfo and Scopus. The team assessed the full-text papers included in the review for quality using the Joanna Briggs Institute checklist (JBI). We completed the literature search on the first of April 2022 and was not limited to a specific period. Results: We identified and included nine relevant studies in the review. We identified five main themes as end-of-life care challenges and/or facilitators: organisational structure and management, (mis)understanding of end-of-life care, spirituality and religious practices for the dying, communication about end-of-life care, and the impact of the ICU environment. Conclusions: This review has reported challenges and facilitators to providing end-of-life care in ICU and made initial recommendations for improving practice. These are certainly not unique to the Middle East but can be found throughout the international literature. However, the cultural context of Middle East and North Africa countries gives these areas of practice special challenges and opportunities. Further observational research is recommended to confirm or modify the results of this review, and with a view to developing and evaluating comprehensive interventions to promote end-of-life care in ICUs in the Middle East. [ABSTRACT FROM AUTHOR]

Background: The World Health Organization identifies pharmacists as a key resource in palliative care. However, the roles of these professionals in end-of-life care at home remain poorly understood, and community pharmacists themselves sometimes struggle to recognize their true role in this care. The aim of our study was to analyze community pharmacists' representations of their roles in palliative care at home in France. Methods: The methodology was qualitative and based on semi-structured interviews with community pharmacists (n = 26). The analysis of the interviews was carried out using a qualitative content approach with thematic and lexical analysis. Results: Three main elements of the community pharmacist's role were identified: drug expertise, care management, and psychosocial support for patients and their families. Conclusions: This study highlights a wide variety of roles adopted by French community pharmacists in palliative care at home. Some of these roles, which are in line with WHO recommendations on palliative care, have been little described to date. These roles of community pharmacists in home-based palliative care could be better recognized, and the players better integrated into end-of-life care systems at home, in order to improve such care. Trial registration: This work was carried out within the framework of a call for projects from the Fondation de France and has received the approval of the University Clermont Auvergne Research Ethics Committee (no. IRB00011540-2021-60). [ABSTRACT FROM AUTHOR]

Objectives: This study was conducted to characterize the need for palliative care and its effect on patients with end-stage disease in the emergency department (ED). Design: This was a prospective cohort study. A questionnaire survey was administered to patients with end-stage disease who were admitted to the resuscitation room of the ED and expected to live less than 6 months. Results: A total of 82 of 2095 patients admitted to the resuscitation room were included. Only 1 (1.22%) patient had ever received palliative care before admission. Nine patients received palliative care consultation after admission, and they were more likely to select medical places of death accompanied by their families and do not resuscitate orders at the end of life after consultation (P < 0.05). Whether the disease had previously been actively treated and the number of children impacted the choice of treatment at the end of life (P < 0.05). Conclusions: Among patients with end-stage disease admitted to the ED, knowledge of palliative care was lacking. Palliative care could help them avoid the damage caused by pointless resuscitation. [ABSTRACT FROM AUTHOR]

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. Method: 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. Conclusion: 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. [ABSTRACT FROM AUTHOR]

Background: Spain currently lacks a competency framework for palliative care nursing. Having such a framework would help to advance this field in academic, governmental, and health management contexts. In phase I of a mixed-methods sequential study, we collected quantitative data, proposing 98 competencies to a sample of palliative care nurses. They accepted 62 of them and rejected 36. Methods: Phase II is a qualitative phase in which we used consensus techniques with two modified nominal groups to interpret the quantitative findings with the objective of understanding of why the 36 competencies had been rejected. Twenty nurses from different areas of palliative care (direct care, teaching, management, research) participated. We conducted a thematic analysis using NVivo12 to identify meaning units and group them into larger thematic categories. Results: Participants attributed the lack of consensus on the 36 competencies to four main reasons: the rejection of standardised nursing language, the context in which nurses carry out palliative care and other factors that are external to the care itself, the degree of specificity of the proposed competency (too little or too great), and the complexity of nursing care related to the end of life and/or death. Conclusions: Based on the results, we propose reparative actions, such as reformulating the competencies expressed in nursing terminology to describe them as specific behaviours and insisting on the participation of nurses in developing institutional policies and strategies so that competencies related to development, leadership and professional commitment can be implemented. It is essential ​​to promote greater consensus on the definition and levels of nursing intervention according to criteria of complexity and to advocate for adequate training, regulation, and accreditation of palliative care expert practice. Locally, understanding why the 36 competencies were rejected can help Spanish palliative care nurses reach a shared competency framework. More broadly, our consensus methodology and our findings regarding the causes for rejection may be useful to other countries that are in the process of formalising or reviewing their palliative care nursing model. [ABSTRACT FROM AUTHOR]

Background: Barriers to accessing hospice and palliative care have been well studied. An important yet less researched area is why people approaching the end-of-life decline a referral when they are offered services. This review focused on synthesising literature on patients in the last months of life due to a cancer diagnosis who have declined a referral to end-of-life care. Methods: Six academic databases were systematically searched for qualitative literature published between 2007 and 2021. Two researchers independently reviewed and critically appraised the studies. Using meta-ethnographic methods of translation and synthesis, we set out to identify and develop a new overarching model of the reasons patients decline end-of-life care and the factors contributing to this decision. Results: The search yielded 2060 articles, and nine articles were identified that met the review inclusion criteria. The included studies can be reconceptualised with the key concept of 'embodied decisions unfolding over time'. It emphasises the iterative, dynamic, situational, contextual and relational nature of decisions about end-of-life care that are grounded in people's physical experiences. The primary influences on how that decision unfolded for patients were (1) the communication they received about end-of-life care; (2) uncertainty around their prognosis, and (3) the evolving situations in which the patient and family found themselves. Our review identified contextual, person and medical factors that helped to shape the decision-making process. Conclusions: Decisions about when (and for some, whether at all) to accept end-of-life care are made in a complex system with preferences shifting over time, in relation to the embodied experience of life-limiting cancer. Time is central to patients' end-of-life care decision-making, in particular estimating how much time one has left and patients' embodied knowing about when the right time for end-of-life care is. The multiple and intersecting domains of health that inform decision-making, namely physical, mental, social, and existential/spiritual as well as emotions/affect need further exploration. The integration of palliative care across the cancer care trajectory and earlier introduction of end-of-life care highlight the importance of these findings for improving access whilst recognising that accessing end-of-life care will not be desired by all patients. [ABSTRACT FROM AUTHOR]

Background: Variation persists in the quality of end-of-life-care (EOLC) for people with cancer. This study aims to describe the characteristics of, and examine factors associated with, indicators of potentially burdensome care provided in hospital, and use of hospital services in the last 12 months of life for people who had a death from cancer. Method: A population-based retrospective cohort study of people aged ≥ 20 years who died with a cancer-related cause of death during 2014–2019 in New South Wales, Australia using linked hospital, cancer registry and mortality records. Ten indicators of potentially burdensome care were examined. Multinominal logistic regression examined predictors of a composite measure of potentially burdensome care, consisting of > 1 ED presentation or > 1 hospital admission or ≥ 1 ICU admission within 30 days of death, or died in acute care. Results: Of the 80,005 cancer-related deaths, 86.9% were hospitalised in the 12 months prior to death. Fifteen percent had > 1 ED presentation, 9.9% had > 1 hospital admission, 8.6% spent ≥ 14 days in hospital, 3.6% had ≥ 1 intensive care unit admission, and 1.2% received mechanical ventilation on ≥ 1 occasion in the last 30 days of life. Seventeen percent died in acute care. The potentially burdensome care composite measure identified 20.0% had 1 indicator, and 10.9% had ≥ 2 indicators of potentially burdensome care. Compared to having no indicators of potentially burdensome care, people who smoked, lived in rural areas, were most socially economically disadvantaged, and had their last admission in a private hospital were more likely to experience potentially burdensome care. Older people (≥ 55 years), females, people with 1 or ≥ 2 Charlson comorbidities, people with neurological cancers, and people who died in 2018–2019 were less likely to experience potentially burdensome care. Compared to people with head and neck cancer, people with all cancer types (except breast and neurological) were more likely to experience ≥ 2 indicators of potentially burdensome care versus none. Conclusion: This study shows the challenge of delivering health services at end-of-life. Opportunities to address potentially burdensome EOLC could involve taking a person-centric approach to integrate oncology and palliative care around individual needs and preferences. [ABSTRACT FROM AUTHOR]

Background: In 2020, the Global Cancer Observatory reported 280,000 cases of childhood cancer worldwide, with a higher burden of disease and mortality rates in low- and middle-income countries. In 2022, the National Institute of Health reported 1708 new cases of childhood cancer in Colombia and an overall survival rate of approximately 55%. The aim of this study is to compare outcomes in children with cancer in the hospital setting during the last 72 h of life who received concurrent Pediatric Palliative Care (PPC) versus oncology care alone. Methods: An observational descriptive study was conducted between January 2013 and June 2022 in a center for pediatric patients with oncological diagnoses. In 2017, the PPC team was created. Patients between 28 days and 17 years of age who were hospitalized at least 72 h before death were included. A retrospective review of the medical records of patients in the last 72 h of life was performed. Two cohorts were established: oncology-alone group received exclusive management by oncology, and oncology and PPC received concurrent oncology and PPC management since the diagnosis. Results: We evaluated 257 medical records of deceased pediatric patients with cancer diagnoses. For the first cohort (2013–2017), 136 patients were included; for the second cohort (2018 and 2022), 121 patients were evaluated. The most frequent diagnosis was leukemia [47.1% (n = 121)]. No significant difference was found in either group between dyspnea, pain, and seizures. Dyspnea was the most frequent symptom in both groups. Agitation and anxiety were reported more frequently in children from the oncology-alone group (22.1% and 13.2%, respectively). The oncology and PPC group received more psychology and social work consultation (94.2% and 70.2% vs. 84.6 and 54.4% in the oncology alone group) and had a higher percentage of advance care planning (79.3% vs. 62.5% in the oncology alone group). Conclusions: This retrospective study highlights that PPC at the end of life (EoL) offers a holistic approach to the physical and psychosocial symptoms experienced by children with cancer; these patients received more comfort through symptom management and less aggressive treatment at the EoL. The availability of a PPC team may contribute to improvements in the quality of end-of-life care. Trial registration: retrospectively registered. [ABSTRACT FROM AUTHOR]

Background: Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and preferences for support and whether the preferences change during the patient's illness trajectory. Therefore, the aim was to explore family caregivers' preferences for support from home care services over time when caring for a family member with cancer at the end of life who wished to die at home. Methods: A qualitative method was applied according to Grounded Theory. Data was collected longitudinally over the illness trajectory by means of repeated individual interviews (n = 22) with adult family caregivers (n = 11). Sampling, data collection and data analysis were undertaken simultaneously in line with the constant comparative method. Results: The findings are captured in the core category "hold out in duty and love". The categories "having control and readiness for action" and "being involved in care" describe the family caregivers' preferences for being prepared and able to handle procedures, medical treatment and care, and to be involved by the healthcare personnel in the patient's care and decision making. The categories "being seen and confirmed" and "having a respite" describe family caregivers' preferences for support according to their own needs to be able to persevere in the situation. Conclusion: Despite deterioration in the patient's illness and the increasing responsibility family caregiver struggle to hold out and focus on being in the present. Over time together with deterioration in the patient's illness and changes in the situation, they expressed a need for more intense and extensive support from the home care services. To meet the family caregivers' preferences for support a systematic implementation of a person-centred care model and multicomponent psycho- educational interventions performed by nurses can be proposed. Moreover, we suggest developing a tool based on the conceptual model generated in this study to identify and map family caregivers' needs and preferences for support. Such a tool can facilitate communication and ensure person-centred interventions. [ABSTRACT FROM AUTHOR]

Background: The consensus among Canadians with regards to end-of-life preferences is that with adequate support the majority prefer to live and die at home. Purpose: To compare quality indicator (QI) rates for home care clients receiving palliative and end-of-life care prior to and after the onset of the COVID-19 pandemic. Methods: A retrospective population-based cohort design was used. Sixteen QIs informed by existing literature and a preliminary set of QIs recently evaluated by a modified Delphi panel were compared. Data were obtained from the interRAI Palliative Care instrument for Ontario home care clients for two separate cohorts: the pre-COVID (January 14, 2019 to March 16, 2020) and COVID cohort (March 17, 2020 to May 18, 2021). A propensity score analysis was used to match (using nearest neighbour matching) on 21 covariates, resulting in a sample size of 2479 unique interRAI Palliative Care assessments in each cohort. Alternative propensity score methods were explored as part of a sensitivity analysis. Results: After matching the pre-COVID and COVID cohorts, five of the 16 QIs had statistically significant differences in the QI rates (change from pre-COVID to COVID): decrease in prevalence of severe or excruciating daily pain (p = 0.03, effect size=-0.08), decrease in prevalence of caregiver distress (p = 0.02, effect size=-0.06), decrease in prevalence of negative mood (p = 0.003, effect size=- 0.17), decrease in prevalence of a delirium-like syndrome (p = 0.001, effect size=-0.25) and decrease in prevalence of nausea or vomiting (p = 0.04, effect size=-0.06). While the alternative propensity score methods produced slightly different results, no clinically meaningful differences were seen between the cohorts when effect sizes were examined. All methods were in agreement regarding the highest QI rates, which included the prevalence of shortness of breath with activity, no advance directives, and fatigue. Conclusion: This study is the first to examine differences in QI rates for home care clients receiving palliative and end-of-life care before and during COVID in Ontario. It appears that QI rates did not change over the course of the pandemic in this population. Future work should be directed to understanding the temporal variation in these QI rates, risk-adjusting the QI rates for further comparison among jurisdictions, provinces, and countries, and in creating benchmarks for determining acceptable rates of different QIs. [ABSTRACT FROM AUTHOR]

Introduction: Advance directives (ADs) has recently been considered as an important component of palliative care for patients with advanced cancer and is a legally binding directive regarding a person's future medical care. It is used when a person is unable to participate in the decision-making process about their own care. Therefore, the present systematic review investigated the factors related to ADs from the perspective of cancer patients. Methods: A systematic review study was searched in four scientific databases: PubMed, Medline, Scopus, Web of Science, and ProQuest using with related keywords and without date restrictions. The quality of the studies was assessed using the Hawker criterion. The research papers were analyzed as directed content analysis based on the theory of planned behavior. Results: Out of 5900 research papers found, 22 were included in the study. The perspectives of 9061 cancer patients were investigated, of whom 4347 were men and 4714 were women. The mean ± SD of the patients' age was 62.04 ± 6.44. According to TPB, factors affecting ADs were categorized into four categories, including attitude, subjective norm, perceived behavioral control, and external factors affecting the model. The attitude category includes two subcategories: "Lack of knowledge of the ADs concept" and "Previous experience of the disease", the subjective norm category includes three subcategories: "Social support and interaction with family", "Respecting the patient's wishes" and "EOL care choices". Also, the category of perceived control behavior was categorized into two sub-categories: "Decision-making" and "Access to the healthcare system", as well as external factors affecting the model, including "socio-demographic characteristics". Conclusion: The studies indicate that attention to EOL care and the wishes of patients regarding receiving medical care and preservation of human dignity, the importance of facilitating open communication between patients and their families, and different perspectives on providing information, communicating bad news and making decisions require culturally sensitive approaches. Finally, the training of cancer care professionals in the palliative care practice, promoting the participation of health care professionals in ADs activities and creating an AD-positive attitude should be strongly encouraged. [ABSTRACT FROM AUTHOR]

Background: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life. Methods: A scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0–19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death). Results: Of the 7377 studies identified, 12 were included for data extraction and content thematic analysis. The themes and subthemes include: 1) valuing the whole person; 2) living while dying; 3) authentic death talk; 4) a supportive approach (with lack and presence of support as subthemes); and, 5) a personalist approach. Conclusions: There is a pressing need for research into the meaning of dying and death for children, their carers and families in Canada. Lack of holistic care, authentic death talk, specialized pediatric palliative care providers, a personalist approach and communities of support present major gaps in care for Canadian children. Research is urgently needed to address these knowledge gaps to generate policy and support practice for dying children in Canada. [ABSTRACT FROM AUTHOR]