Psychosocial Factors Associated With Thoughts Regarding Life-Sustaining Treatment for Oneself and Family Members.

OBJECTIVE: This study aims to investigate the thoughts of the general population regarding life-sustaining treatment for both oneself and family members and to assess the factors associated with those thoughts. METHODS: A total of 1,500 individuals participated in this study by completing a questionnaire consisting of self-reporting items with some instructions, basic demographic information, thoughts on life-sustaining treatment, and psychosocial scales. The disease status was calculated using the Charlson Comorbidity Index. The psychosocial scales included the Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), Pittsburgh Sleep Quality Index, and Multidimensional Scale of Perceived Social Support. RESULTS: The majority of participants did not want to receive life-sustaining treatment for both themselves and their families. However, more people wanted life-sustaining treatment for their family members (35.9%) than for themselves (21.6%). Among the basic demographic characteristics, there were significant differences in age, sex, marital status, living arrangements, occupational status, religion, and disease status. Regarding the psychosocial scales, there were significant differences in the PHQ-9 and GAD-7 scores between the group that preferred life-sustaining treatment for family members and the group that did not. CONCLUSION: The findings suggest that life-sustaining treatment decisions for oneself and for one's family members can be different. We recommend a more clear expression of one's preferences regarding the last moments of one's life, including advance directives.

Anxiety and resilience in palliative medicine physicians.

OBJECTIVE: To identify the relationship between the degree of anxiety and the capacity for resilience in palliative care physicians. METHODS: Cross-sectional analytical study with non-probability sampling. We included 42 Colombian Palliative Care Physicians and administered a sociodemographic questionnaire, the Zung Anxiety Scale and the Resilience Scale. RESULTS: 42 palliative care physicians with an average age of 41 participated in the study. Anxious symptoms were present in 100% of the physicians evaluated. Mild or moderate anxiety was identified in 93.7% of the population and 6.3% of people with severe anxiety symptoms. Less than half of the participants considered demonstrated high levels of resilience. We found an inverse and significant correlation between the factors that make up the Resilience Scale and the manifestation of psychological and physical symptoms of anxiety. CONCLUSION: Our results reflect that the population of palliative care physicians has a higher risk and exposure to developing anxiety and its adverse outcomes. We found higher anxiety levels compared with other studies so this population requires greater vigilance and intervention in treating and preventing mental health difficulties.

Appropriate Timing of End-of-Life Care: A Dutch Policy Analysis and Opportunities for Improvement.

Background: The Exceptional Medical Expenses Act (EMEA) guaranteed public financing for the costs of end-of-life care in The Netherlands until 2015. A life expectancy shorter than three months was a prerequisite for a patient to qualify. Objective: To estimate survival and its potential predictors using the start date of EMEA funded end-of-life care as time origin, and to calculate the ensuing costs. Design: Retrospective observational study using data retrieved from multiple datasets of the national statistical office Statistics Netherlands (https://www.cbs.nl/en-gb/). Setting: Included were all adult patients, who received EMEA funded end-of-life care in hospice units in nursing homes and homes for the elderly in The Netherlands between January 1, 2009, and December 31, 2014. Results: In 40,659 patients (median age 79 years), the distribution of survival was extremely skewed. Median, 95%, and maximum survival times were 15 (95% confidence interval [CI] = 15-15), 219 (210-226), and 2,006 days, respectively. The 90-day and 180-day survival rates were 12.4 (12.1-12.7)% and 6.2 (6.0-6.5)%, respectively. Although age, gender, diagnosis, and start year of end-of-life care were statistically significant independent predictors, clinical significance is limited. End-of-life care was delivered for a total of 1,720,002 days, costing almost 440 million Euros. Fifty-nine percent of the costs was for barely 11% of patients, i.e., those who received end-of-life care for more than 90 days. Conclusion: The use of life expectancy is a weak basis for the appropriate timing of end-of-life care. Further research should evaluate potential tools to improve the timing of end-of-life care, while using available resources efficiently.

Fulfilling last wishes: improving the compassionate discharge process.

BACKGROUND: Compassionate discharges (ComD), commonly known as rapid discharges, are urgent one-way discharges for critically ill hospitalised patients with death expected within hours or less than 7 days, to die at their place of choice-usually in their own home. Challenges abound in this time-sensitive setting when multiple parties must work together to prepare medically unstable patients for discharge, yet healthcare staff are largely unaware of the process, resulting in delays. METHODS: Process mapping, an Ishikawa diagram and a Pareto chart were used to identify barriers, which included timely acquisition of home equipment and medication and poor communication among stakeholders. In May 2020, the Quality Improvement (QI) team embarked on a pilot project to reduce family caregiver anxiety and delays in the ComD process while maintaining a success rate above 90% over a 12-month period. INTERVENTIONS: Three Plan-Do-Study-Act (PDSA) cycles were used to refine a ComD resource package that was developed; this consisted of a checklist, a kit and caregiver resources. This was to support nurses, doctors and families during this difficult and emotional transition. Items in the ComD resource package were revised iteratively based on user feedback, with further data collected to measure its usefulness. RESULTS: The 12-month ComD success rate over 3 PDSA cycles were 88.9%, 94.2% and 96.7%, respectively, after each cycle. There was a consistent reduction in the level of family anxiety before and after caregiver training and resources. Reasons for failed ComD included acute clinical deterioration or delays in obtaining home oxygen support. CONCLUSION: The ComD resource package allowed collaborative work across different disciplines, strengthening the safety and utility of ComD and allowing patients to die in their place of choice. These are ubiquitous across settings; this QI problem is thus relevant beyond our local institution.

Exploring end of life care provision during medical imaging in hospitals: Analysis of survey data from the UK radiography workforce.

INTRODUCTION: Patients receiving end-of-life care often undergo medical imaging examinations in hospitals to inform symptom management and care. Yet little is known about the experiences of the radiography workforce who deliver it. This study aims to describe and explore experiences of the UK radiography workforce delivering medical imaging as part of patients' end-of-life care. METHODS: A mixed method cross-sectional online survey disseminated via social media and national organisations from September 2023 to January 2024. Diagnostic radiographers, assistant practitioners and radiology assistants involved in the medical imaging of patients receiving end-of-life care in UK hospitals. RESULTS: 120 valid responses were received. Most respondents received no education/training (91.6%) on the role of medical imaging in end-of-life care, despite 87.7% expressing a need for education, particularly around adopting supportive/palliative-centric communication techniques. Although most respondents (89.2%) had heard of end-of-life care, some had difficulty understanding the role of medical imaging in end-of-life care. Insufficient information provided on imaging requests hindered the workforces' ability to determine and understand the appropriate use of medical imaging during end-of-life care. These uncertainties exacerbated negative emotions, with 80.8% of respondents indicating that they felt emotional during or after imaging patients on end-of-life care. CONCLUSION: Educational and policy needs were identified around facilitating more supportive/palliative-centric communication techniques and providing the radiography workforce with the knowledge to better understand, explain, deliver and where necessary, challenge the use of medical imaging in end-of-life care. IMPLICATIONS FOR PRACTICE: This study has evidenced the important role the radiography workforce play in generalist end-of-life care. However, there is a need for training to support practitioners as well as appropriate policies to develop supportive and high-quality end-of-life care in medical imaging.

Living and dying between cultural traditions in African & Caribbean Heritage families: a constructivist grounded theory.

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.

Mapping Evidence in Teaching Palliative Care in Undergraduate Curriculum of Healthcare Professionals Qualification: A Systematic Scoping Review Protocol.

Background: Clinical Practice Guidelines recommend interprofessional collaboration in palliative care. However, healthcare profession educators lack clear curricular guidance, particularly for undergraduate programs, to adequately train future professionals for effective participation in such teams. Objective: This systematic scoping review protocol aims to address this gap by: (i) mapping evidence on key characteristics of teaching palliative and end-of-life (EOL) care to undergraduate healthcare and social care students, and (ii) identifying the nature and effectiveness of educational interventions for improving palliative care education in the undergraduate curriculum. Methods and Expected Outputs: The protocol adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol Extension for Scoping Reviews (PRISMA-P-ScR) guidelines, while the proposed systematic scoping review study will be conducted based on methods and steps identified by Arksey and O'Malley and experts in the field. We will conduct systematic searches across five EBSCOhost databases using relevant search terms. Additionally, a limited grey literature search will be conducted on the first 100 results of Google Scholar and Open-Grey. The selection process will follow PRISMA-Extension for Scoping Reviews. Two independent reviewers will screen titles and abstracts for eligibility. Data extraction will be done on standardized forms in duplicate with cross-checking by a third reviewer. Braun and Clarke's thematic analysis approach, combining thematic and directed content analysis, will be employed for analysis. Intervention effectiveness will be narratively summarized based on the TIDieR checklist. Meta-analysis will be considered if applicable and data is homogeneous. Discussion: Palliative care education (PCE) is a crucial element of undergraduate health professions education. This study's findings may aid educators in fostering optimal learning among healthcare students, who can then positively influence community health outcomes. Ethics and dissemination: The protocol was submitted for ethical clearance to the University of KwaZulu-Natal's Biomedical Research Ethics Committee and granted exemption from ethics review (00024289). We will disseminate findings through scientific journal publication and by sharing a summary with relevant institutions and attendees at health promotion and interprofessional education conferences.

Transition to end-of-life care in patients with neurological diseases in an acute hospital ward.

BACKGROUND: Transitioning to end-of-life care and thereby changing the focus of treatment directives from life-sustaining treatment to comfort care is important for neurological patients in advanced stages. Late transition to end-of-life care for neurological patients has been described previously. OBJECTIVE: To investigate whether previous treatment directives, primary medical diagnoses, and demographic factors predict the transition to end-of-life care and time to eventual death in patients with neurological diseases in an acute hospital setting. METHOD: All consecutive health records of patients diagnosed with stroke, amyotrophic lateral sclerosis (ALS), and Parkinson's disease or other extrapyramidal diseases (PDoed), who died in an acute neurological ward between January 2011 and August 2020 were retrieved retrospectively. Descriptive statistics and multivariate Cox regression were used to examine the timing of treatment directives and death in relation to medical diagnosis, age, gender, and marital status. RESULTS: A total of 271 records were involved in the analysis. Patients in all diagnostic categories had a treatment directive for end-of-life care, with patients with haemorrhagic stroke having the highest (92%) and patients with PDoed the lowest (73%) proportion. Cox regression identified that the likelihood of end-of-life care decision-making was related to advancing age (HR = 1.02, 95% CI: 1.007-1.039, P = 0.005), ischaemic stroke (HR = 1.64, 95% CI: 1.034-2.618, P = 0.036) and haemorrhagic stroke (HR = 2.04, 95% CI: 1.219-3.423, P = 0.007) diagnoses. End-of-life care decision occurred from four to twenty-two days after hospital admission. The time from end-of-life care decision to death was a median of two days. Treatment directives, demographic factors, and diagnostic categories did not increase the likelihood of death following an end-of-life care decision. CONCLUSIONS: Results show not only that neurological patients transit late to end-of-life care but that the timeframe of the decision differs between patients with acute neurological diseases and those with progressive neurological diseases, highlighting the particular significance of the short timeframe of patients with the progressive neurological diseases ALS and PDoed. Different trajectories of patients with neurological diseases at end-of-life should be further explored and clinical guidelines expanded to embrace the high diversity in neurological patients.

Nurses' engagement in advance care planning practices: A descriptive cross-sectional study.

AIMS: To describe and compare nurses' awareness of, attitudes toward, and participation in advance care planning, as well as related facilitators and challenges, in four types of healthcare settings. DESIGN: A cross-sectional descriptive study. METHODS: Four hundred and ninety-eight registered nurses from tertiary, secondary and primary healthcare institutions, along with long-term care centres in South Korea, participated in an investigator-developed online survey. The collected data were analysed using descriptive statistics, chi-squared test, one-way ANOVA, and binary logistic regression. RESULTS: Participants were on average 30.6 ± 7.3 years old, mostly female (95.4%), employed as staff nurses (95.4%), held bachelor's degrees or higher (84.1%), and had worked for less than 5 years at their current institutions (69.7%). Overall, 49% of the participants were familiar with advance care planning. While most participants supported nurse involvement in advance care planning with patients and surrogates, fewer were willing to engage or recommend it. Less than half were actively engaged in advance care planning practices. A notable challenge was the lack of time due to excessive workload. Compared to those from tertiary healthcare institutions, participants from secondary and primary healthcare institutions and long-term care centres were less likely to be aware of advance care planning. Participants from secondary and primary healthcare institutions had lower odds of checking for the presence of advance directives and the physician orders for life-sustaining treatment. CONCLUSION: Nurses demonstrated low awareness and participation in advance care planning. Nurses' insufficient time and competency to conduct advance care planning in their practice should be addressed. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Educational programs, initiatives (e.g. guidelines, position statements) and legal and policy-level efforts (e.g. nurse staffing, role clarification, reimbursement) are crucial to incorporate advance care planning into routine nursing practice. IMPACT: What problem did the study address? Nurses play an important role in advance care planning; however, limited is understood about their readiness and involvement in such practices. What were the main findings? Nurses' awareness of advance care planning practices and their participation in such practices is low across care settings. Although nurses have a positive attitude toward advance care planning, there are challenges (e.g. insufficient time to conduct advance care planning discussions and lack of relevant knowledge and skills) that impede their participation in practice. Where and on whom will the research have an impact? This study may serve as a foundation for nursing societies in countries, where advance care planning is emerging, to discuss strategies to increase nurses' competency in advance care planning and promote their participation in the practice. REPORTING METHOD: The STROBE checklist was followed. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Timely integration of palliative care. the reality check. a retrospective analysis.

PURPOSE: A large volume of literature suggests that timely integration of palliative care (PC) enhances the well-being, quality of life and satisfaction of patients and their families. It may also positively impact clinical outcomes and healthcare costs throughout the disease trajectory. Therefore, reviewing clinical practice to reflect real-life situations regarding timely PC integration is essential. METHODS: This study, conducted at the Vienna General Hospital between March 2016 and August 2022, retrospectively examined PC consultation (PCC) requests. It aimed to assess the timeliness of PC integration by analysing the duration between diagnosis and the first PCC request, as well as the interval between the first PCC request and death. RESULTS: This study included 895 PCCs. The median time from diagnosis to the first PCC was 16.6 (interquartile range (IQR): 3.9-48.4) months, while the median time from the first PCC to death was 17.2 (IQR: 6.1-50.7) days. The median time from diagnosis to first PCC was 10.4 months in females (confidence interval (CI): 6.0-14.8) compared to 10.6 months in males (CI: 8.1-13.1; p = 0.675). There were no gender disparities in the time from first PCC to death, with a median of 23.3 days (CI: 15.6-31.0) for females and 22.3 days (CI: 16.2-28.4) for males (p = 0.93). Fifty percent of patients died between 5 and 47 days after the first PCC. CONCLUSION: These findings highlight the discrepancy between the clinical perception of PC as end-of-life care and the existing literature, thereby emphasising the importance of timely PC integration.

What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study.

BACKGROUND: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. AIM: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. DESIGN: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. SETTING/PARTICIPANTS: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. RESULTS: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. CONCLUSIONS: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care.

Propofol for palliative sedation in catastrophic bleeding.

Catastrophic bleeds are life-threatening events. This case report describes the successful use of intravenous propofol infusion in order to facilitate palliative sedation in the context of a catastrophic bleed where traditional medications did not yield the necessary level of effect as the patient survived another 72 hours after the onset of the bleeding event. Given the prolonged period post onset of this patient's catastrophic bleed, this case demonstrates the effective use of an intravenous propofol infusion to facilitate comfort and sedation when drug classes such as benzodiazepines and barbiturates failed to do so. Given the successful outcome detailed in this case, we strongly advocate for the development of guidelines that incorporate propofol alongside other pharmacological measures when addressing palliative sedation.

Interprofessional interventions and factors that improve end-of-life care in intensive care units: An integratory review.

INTRODUCTION: The changes in health dynamics, caused by the SARS-COVD-2 pandemic and its consequences, generated a greater need to integrate palliative care in the ICU to promote a dignified death. OBJECTIVE: Identify interprofessional interventions and factors that improve the care of patients at the end of life. METHODOLOGY: Integrative review, including experimental, quasi-experimental, observational, analytical, and descriptive studies with correlation of variables, published from 2010 to 2021, identified in COCHRANE, CINAHL, CUIDEN, LILACS, SCIELO, Dialnet, PsychInfo, PubMed, PROQUES, PSYCHOLOGY, JOURNALS, SCIENCEDIRECT, with MeSH/DECS terms: "Critical Care", "IntensiveCare" "Life support care", "Palliative care", "Life Quality", "Right to die". 36,271 were identified, after excluding duplicate title, abstract, year of publication, design, theme, methodological quality, objectives, and content, 31 studies were found. RESULTS: It included 31 articles, 16.7% experimental, 3.3% quasi-experimental, 80% observational, analytical, and descriptive with correlation of variables, 38% published in the United States, 38%, and 19% in Brazil. The pooled sample was 24,779 participants. 32.2% of the studies had level of evidence 1 recommendation (c), and 25.8% level of evidence 2 recommendation (c). This paper synthesises evidence to promote Interprofessional Collaborative Practice in the ICU, improve end-of-life care, and interventions to achieve established therapeutic goals, implement effective care policies, plans, and programmes for critically ill patients and their families; factors that affect palliative care and improve with training and continuing education for health personnel. CONCLUSION: There are interventions to manage physical and emotional symptoms, training strategies and emotional support aimed at health personnel and family members to improve the quality of death and reduce stays in the ICU. The interdisciplinary team requires training on palliative and end-of-life care to improve care.

'I tried to get into their shoes and their culture'. Care worker experiences in cultural end-of-life care: Interpretative phenomenological analysis.

AIM: What are care workers' lived experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care? DESIGN: Interpretative phenomenological analysis METHODS: The lived experiences of 11 care workers within the Australian Capital Territory and region who have cared for someone of a culturally and linguistically diverse background during end-of-life care were captured. Each care worker was interviewed individually and answered a series of semi-structured open-ended questions. RESULTS: Using interpretative phenomenological analysis, three group experiential themes were derived: (i) navigating cultural shock and death, (ii) the hard work of communication and (iii) searching for deeper connections with client and self. Within these were key elements: Care workers worked hard to embrace cultural diversity, but struggled to meet cultural needs, particularly in relation to the unpredictable timeline of dying. Care workers relied on themselves and their improvisation, but experienced self-blame for inadequate care and unexpected challenges in communication. Blurred boundaries in relation to therapeutic relationships were apparent, and care workers felt alone with emotional burden, but also found belonging and joy in their work. CONCLUSION: Care workers' experiences are vital to understanding the barriers and challenges in providing culturally appropriate end-of-life care. Care workers repeatedly experienced an emotional burden and vicarious trauma throughout their work in this field. Care workers were self-reliant in all aspects of care including communication and consistently desired education, training, resources and support. There remains inadequate research on care workers and their role within the Australian healthcare context. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Care workers need access to support and resources including professional translators to provide culturally appropriate end-of-life care. Workplaces and registered nurses should facilitate training and provide guidance to care workers. A person-centred approach is required during all client encounters while maintaining appropriate therapeutic relationships including therapeutic use of self and professional boundaries. REPORTING METHOD: COREQ Checklist. PATIENT OR PUBLIC CONTRIBUTION: During this study, care workers were interviewed on their experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care. Patients were not directly involved within this study, but their views may have been expressed through the care workers' experience.

Small Steps, Big Vision: using multi-stage qualitative research to develop a grab-and-go guide to support utilisation of the Ambitions for Palliative and End of Life Care framework.

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.

Clinical features of audible upper airway secretions ("death rattle") in patients with cancer in the last days of life.

PURPOSE: Audible upper airway secretions ("death rattle") is a common problem in cancer patients at the end-of-life. However, there is little information about its clinical features. METHODS: This is a secondary analysis of a cluster randomised trial of clinically-assisted hydration in cancer patients in the last days of life. Patients were assessed 4 hourly for end-of-life problems (including audible secretions), which were recorded as present or absent, excepting restlessness/agitation, which was scored using the modified Richmond Agitation and Sedation Scale. Patients were followed up until death. RESULTS: 200 patients were recruited, and 186 patients died during the study period. Overall, 54.5% patients developed audible secretions at some point during the study, but only 34.5% patients had audible secretions at the time of death. The prevalence of audible secretions increased the closer to death, with a marked increase in the last 12-16 h of life (i.e. the prevalence of audible secretions was highest at the time of death). Of those with audible secretions at the time of death, 24 had had a previous episode that had resolved. Development of audible secretions was not associated with use of clinically-assisted hydration, but there was an association between audible secretions and restlessness/agitation, and audible secretions and pain. However, most patients with audible secretions were not restless/agitated, or in pain, when assessed. CONCLUSION: Audible secretions ("death rattle") are common in cancer patients at the end-of-life, but their natural history is extremely variable, with some patients experiencing multiple episodes during the terminal phase (although not necessarily experiencing an episode at the time of death).

Evaluation of the Concept of Value-Based Healthcare Applied to an Integrated Palliative Care Program in Colombia.

OBJECTIVE: This study aimed to evaluate the "Value-Based Healthcare" concept of an integrated palliative care (PC) program in Bogotá, Colombia, through the measurement of health outcomes and care costs in the last 3 months of life. METHODS: A multicenter, retrospective cohort study that included patients ≥18 years old who died in 2020 due to medical conditions amenable to PC. The measured health outcomes included pain, wellbeing, comfort, quality of life (QOL), and satisfaction. We analyzed the behavior of overall care costs during the last 3 months of the patients' lives and controlled for the effect of exposure to the program, considering the disease type and insurance coverage, using a linear regression model, nearest-neighbor matching, and sensitivity analysis. RESULTS: Among patients exposed to the program, the mean pain score was 2.1/10 (± 1.3) and wellbeing was rated at 3.5/10 (± 1.0), comfort at 1.6/24 (± 1.3), QOL at 3.6/5.0 (± 0.17), and satisfaction at 9.3/100 (± 0.15). The positive changes in these scores were greater for patients who remained in the program for over 3 months. Cost reduction was demonstrated in the last 90 days of life, with statistically significant and chronologically progressive savings during the last 30 days of life exceeding 5 million pesos per patient (P < .05). CONCLUSIONS: This study demonstrated the success of PC in reducing pain, improving wellbeing and QOL, providing comfort, and ensuring high levels of satisfaction. Moreover, PC is an effective value-based healthcare strategy and can significantly enhance the efficiency of healthcare services by reducing end-of-life healthcare costs.

Stress and sleep quality in palliative care.

OBJECTIVES: Palliative care patients experience problems in sleep quality due to stress, chronic diseases, and physical and psychosocial problems. Our aim is to determine the perceived stress and sleep quality levels of our palliative care patients and their related factors. METHODS: This cross-sectional, descriptive research was conducted between November 2023 and February 2024 at a palliative clinic located in Ankara, Turkey, that is affiliated with a training and research hospital. In the research, a data form, the Perceived Stress Scale and the Pittsburgh Sleep Quality Index were used as data collection instruments. Kolmogorov-Smirnov and Shapiro-Wilk tests, and Mann-Whitney U and Kruskal-Wallis H tests were used for the analysis. RESULTS: The total score on the Perceived Stress Scale was determined to be 35.81±7.45. The total score for Pittsburgh Sleep Quality Index was 13.20±3.20. Significant relationships were found between insufficient self-efficacy scores and habitual sleep efficiency, daytime dysfunction and total Pittsburgh Sleep Quality Index scores. Significant relationships were found between insufficient self-efficacy scores and sleep latency, habitual sleep efficiency, daytime dysfunction and total Pittsburgh Sleep Quality Index scores. CONCLUSIONS: This study determined that certain descriptive characteristics of palliative care patients affect their sleep quality and perceived stress level, as well as that some components of sleep quality and perceived stress level are related. Palliative care is holistic in nature, encompassing symptom management; therefore, the importance of patients' psychosocial integrity should not be overlooked. Consequently, identifying components that may hinder symptom management and addressing the patient comprehensively will be crucial.

Challenges in recognizing and discussing changes in a resident's condition in the palliative phase: focus group discussions with nursing staff working in nursing homes about their experiences.

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.

Knowledge and Perceptions of the End of Life among Tunisian Medical and Paramedical Staff.

Purpose: End-of-life (EOL) care is a vulnerable period in an individual's life. Healthcare professionals (HPs) strive to balance the preservation of human life with respect for the patient's wishes. The aims of our study were to assess HPs' knowledge and perceptions of EOL care and to propose areas of improvement to improve the quality of care. Methods: We conducted a single-center, cross-sectional study involving HPs from a university hospital who encountered EOL care situations. We used a questionnaire divided into four sections knowledge, practice, perception, and training. We calculated the rate of correct answers and the collective competence index. Results: Eighty-six questionnaires were analyzed, with 82.5% (71/86) completed by medical respondents and 17.5% (15/86) by paramedical respondents. Most of the respondents, 71.8% (51/71), were interns and residents. The study focused on palliative care, medical assistance in dying, aggressive medical treatment, and euthanasia, finding adequate knowledge in the first three areas. Respondents assigned to the intensive care unit and those with more than 8 years of experience had significantly higher correct answer rates than their counterparts. Seventy-five percent of respondents (65/86) reported feeling that they had little or no mastery of EOL care, primarily attributing this to insufficient training and the unavailability of trainers. Conclusion: Based on the findings of our study, which we believe to be the first of its kind in Tunisia, we can conclude that HPs possess an acceptable level of knowledge regarding EOL care. However, they require more exposure and training to develop expertise in this area.