Exploring the contextual assumptions, interventions and outcomes of digital advance care planning systems: A theory of change approach to understand implementation and evaluation.

BACKGROUND: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation. AIM: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems. DESIGN: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation. PARTICIPANTS: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities). RESULTS: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated. CONCLUSIONS: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation.

Palliative Care and the Self-Fulfilling Prophecy in Stroke Patients: is There Anything to Fear? A Retrospective Study of Patients Who Died During Hospitalization in a Quaternary Care Hospital.

BACKGROUND AND PURPOSE: Primary palliative care (PC) aims to improve the quality of life for patients with acute ischemic stroke but is often misinterpreted as withdrawal of care. The self-fulfilling prophecy withdrawal bias is feared in this context of PC's early implementation. This study evaluates stroke patients who died in the hospital to determine the impact of PC evaluation. METHODS: A retrospective descriptive analysis of patients who died from acute ischemic stroke was conducted. The study included patients aged ≥18 years admitted to the Stroke Unit of a quaternary hospital in Brazil from January 2017 to December 2018. The impact of PC assessment on outcomes was analyzed, with significance set at 5%. RESULTS: Among the patients who died during hospitalization as a result of an ischemic stroke (n = 77), 39 (%) were assessed by the palliative care team. There was no difference in the total length of stay or duration of antibiotic therapy. Logistic regression corrected for significant variables from the univariate analysis revealed that PC evaluation was associated with a 31-fold increase in opioid use (P < 0.001), a nearly 14-fold increase in discharges to the ward, and a threefold reduction in ICU length of stay (P = 0.011). CONCLUSION: PC team involvement was associated with higher rates of discharge to the floors, inferring more time spent with family and increased opioid use, suggesting better symptom control, without reducing the overall length of stay or duration of antibiotic therapy. This underscores that PC does not equate to withdrawal of care.

Adopting a 'community of practice' between palliative and dementia care nurses.

Dementia usually occurs as a result of brain disease and, while it is usually chronic or progressive in nature, it has not traditionally been conceptualised as a terminal or life-limiting syndrome. However, the median survival time for people with dementia is between 3.5 years and 4.5 years from symptom onset to death, although this varies depending at which stage the dementia is diagnosed and its cause. As such, it has long been recognised that people with dementia and their family carers have palliative care needs equal to those of patients with cancer. However, a palliative approach to dementia care requires both the dementia and palliative care workforces to fully understand the needs of people with dementia and their families towards the end of life. This article describes the development of a 'community of practice' where healthcare professionals from dementia and palliative care services shared their practice and learned from each other in a safe and supportive environment.

Differences in Timely Goals of Care Discussions in Nursing Homes Among Black Residents.

BACKGROUND: In the United States, disparities persist in end-of-life care outcomes between Black and White nursing home (NH) residents, particularly concerning infection-related management. Timely goals of care (TGOC) discussions are crucial for improving end-of-life outcomes but exhibit racial variations within NHs that are not well understood. OBJECTIVES: Examine the association between the proportion of Black residents within NHs and TGOC discussion related to infection management. DESIGN: A national analysis of palliative care survey data from NHs with the Minimum Dataset 3.0 and administrative data. SETTING/SUBJECTS: 892 NHs representing a weighted sample of 14,981 facilities. MEASURMENTS: TGOC discussions related to infection management were quantified using an index score from the palliative care survey (range: 0-18). Multivariable analyses assessed the association between the proportion of Black residents (≤2%, 2.1%-15%, >15%) and TGOC index scores. RESULTS: The majority of NHs were for-profit, chain-affiliated, urban facilities with fewer than 100 beds, serving both Medicare and Medicaid beneficiaries. In stratified analyses, NHs with 2.1%-15% (-0.97 score; 95%CI -1.86, -0.07; P < .05) and 15% or more Black residents (-3.86 score; 95%CI -6.62, -1.10; P < .01) showed lower TGOC index scores compared to NHs with 2% or fewer Black residents in the West. NHs with 2.1%-15% Black residents had 1.29 lower TGOC index scores compared to NHs with 2% or fewer Black residents (95%CI -2.51, -0.07; P < .05) in the Northeast. CONCLUSIONS: TGOC discussions in US NHs are influenced by the proportion of Black residents, highlighting the need for targeted interventions to address regional disparities and improve end-of-life care equity.

Uncovering pathways towards sustainable transportation: Investigating factors influencing societal acceptance of end-of-life vehicle management in Indonesia.

Addressing the critical environmental challenge of end-of-life vehicle (ELV) management in Indonesia's transportation industry, this study investigates the complex interplay between societal factors and technical adoption. We use a comprehensive survey and path analysis to investigate the relationships between demographic characteristics (gender, age, income and education) and ELV acceptance, revealing complex preferences and concerns across several population groups. Comparative analyses with previous research reveal gender-specific inequities and age-related problems, emphasizing the importance of customized measures. Our findings indicate that environmental concerns exhibit a significant positive relationship with community acceptance (path coefficient = 0.426, p < 0.001). Moreover, technological familiarity (path coefficient = 0.352, p < 0.001) and infrastructure availability (path coefficient = 0.518, p < 0.001) demonstrate noteworthy positive associations, emphasizing the role of knowledge and accessible infrastructure in promoting acceptance. Conversely, the cost of adoption exhibits a negative relationship with societal acceptance (path coefficient = -0.269, p < 0.001), suggesting potential challenges that must be addressed. Mediation analysis uncovers the mediating roles of information exposure, perceived safety, as well as convenience and accessibility. Total effects analysis validates the collective influence of crucial factors while acknowledging the potential hindrance posed by the cost of adoption. Our findings contribute to inclusive policies and initiatives for sustainable ELV practices, offering insights to address a critical environmental issue in Indonesia. Although acknowledging limitations in scope and methodology, our research advances the discourse on sustainable transportation transitions and guides strategies to promote responsible ELV management in pursuing a greener and more socially equitable future.

Meeting social welfare legal needs in end-of-life care: co-creation of a system-wide research partnership.

Background: Social welfare legal needs (matters of daily life, such as finances, housing and employment with legal rights, entitlements or protections) are prevalent towards end of life, creating significant difficulties for both patients and carers. Most people do not know where to go, although a range of services provide advice and support for addressing social welfare legal problems. Navigating this complex and fragmented system across health, social care and social welfare legal support is very challenging. Healthcare professionals are often the first contact for social welfare legal needs, although these are often overlooked and their impact on health and well-being unrecognised. Interprofessional learning can increase awareness of social welfare legal needs and build connections between service providers, offering a more holistic and cohesive multiagency response to the complex needs around end of life. The aim of the research was to co-create a robust foundation for cross-agency research investigating the impact of interprofessional learning on social welfare legal needs towards end of life in the North East England region. Objectives: Convene a research partnership group across academics, multiagency service providers and members of the public with lived experience. Consider and agree key issues for successful place-based multiagency research in this area. Co-create a complexity-appropriate research proposal with interprofessional learning as an intervention. Methods: A series of research activities was implemented to convene a multiagency partnership group and consider the key issues for successful place-based multiagency research. Data were collected from two online workshops, an optional reflective workbook, and a modified Delphi technique. Initial participants were selectively recruited from our established stakeholder and patient and public involvement groups. Increasing diversity of the partnership continued throughout the project, using contacts provided by group members. Representation of services supporting underserved groups was a priority. Results: All invited participants were recruited to the partnership, although contribution to research activities was variable. The partnership bridged knowledge gaps between services and united diverse perspectives, expertise and experience. A greater understanding of the barriers and opportunities for place-based multiagency working was generated, such as considering the importance of language in facilitating collaboration and responding to concerns around capacity. A non-hierarchical partnership was meaningful, with both personal and professional insights viewed as equally important. Facilitators to engagement with interprofessional learning were identified including the need for leadership endorsement. A non-traditional, mixed-method approach to interprofessional learning evaluation was favoured, with both qualitative and quantitative measures at three levels: patient and carer, professional learners and organisations. Important outcomes included raising awareness, connectedness and space to reflect. Limitations: The partnership group expanded throughout the course of the project. While this extended diversity, variable participation hindered depth of discussion, with participants engaging at different points and with different understanding levels of the project. Supplementary materials provided some mitigation. Capacity and funding constraints limited engagement for some participants. Conclusions: Convening a multiagency partnership generated insights into the benefits, barriers and facilitators to research co-design and potential measures of success of interprofessional learning. Future work: Learning from this project has informed a complexity-appropriate research proposal to evaluate the impact of interprofessional learning as an intervention across different stakeholders. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR135276.

Social welfare legal issues, such as unsuitable housing, job difficulties and money concerns, are common in the last 12 months of a person's life and they affect carers too. Getting the right help can be difficult as it is hard to know where to go. Organisations and services often work separately from each other. Healthcare professionals are often the first contact for social welfare legal needs, but they may not be able to provide the required support. Interprofessional learning brings professionals together to learn from each other and connect services better. We think this will make it easier for people to get the help they need when the same is required. We set up a group of professionals and four people with personal experience. This partnership group started with people and organisations we knew already but more joined during the project. By the end, 37 different services, representing a range of health, advice and community services, had joined the research group. All services had experience of social welfare legal issues in the last 12 months of life. The group discussed running research together and how interprofessional learning could be tested in our next research project. Research activities were: two online meetings to discuss key questions a workbook which gave time to think about the questions we were asking a survey which asked participants their views about measuring success of interprofessional learning. Group members brought a variety of experiences and opinions. Some had difficulty taking part, mainly because of time. We learnt that professional and personal experiences are as important as each other and that it is important to avoid jargon. Testing if interprofessional learning makes a difference needs to look at people using services, professionals and organisations. We have written a funding application, based on what we have learnt in this project.

Coaching doctors to improve ethical decision-making in adult hospitalized patients potentially receiving excessive treatment. The CODE stepped-wedge cluster randomized controlled trial.

PURPOSE: The aim of this study was to assess whether coaching doctors to enhance ethical decision-making in teams improves (1) goal-oriented care operationalized via written do-not-intubate and do-not attempt cardiopulmonary resuscitation (DNI-DNACPR) orders in adult patients potentially receiving excessive treatment (PET) during their first hospital stay and (2) the quality of the ethical climate. METHODS: We carried out a stepped-wedge cluster randomized controlled trial in the medical intensive care unit (ICU) and 9 referring internal medicine departments of Ghent University Hospital between February 2022 and February 2023. Doctors and nurses in charge of hospitalized patients filled out the ethical decision-making climate questionnaire (ethical decision-making climate questionnaire, EDMCQ) before and after the study, and anonymously identified PET via an electronic alert during the entire study period. All departments were randomly assigned to a 4-month coaching. At least one month of coaching was compared to less than one month coaching and usual care. The first primary endpoint was the incidence of written DNI-DNACPR decisions. The second primary endpoint was the EDMCQ before and after the study period. Because clinicians identified less PET than required to detect a difference in written DNI-DNACPR decisions, a post-hoc analysis on the overall population was performed. To reduce type I errors, we further restricted the analysis to one of our predefined secondary endpoints (mortality up to 1 year). RESULTS: Of the 442 and 423 clinicians working before and after the study period, respectively 270 (61%) and 261 (61.7%) filled out the EDMCQ. Fifty of the 93 (53.7%) doctors participated in the coaching for a mean (standard deviation [SD]) of 4.36 (2.55) sessions. Of the 7254 patients, 125 (1.7%) were identified as PET, with 16 missing outcome data. Twenty-six of the PET and 624 of the overall population already had a written DNI-DNACPR decision at study entry, resulting in 83 and 6614 patients who were included in the main and post hoc analysis, respectively. The estimated incidence of written DNI-DNACPR decisions in the intervention vs. control arm was, respectively, 29.7% vs. 19.6% (odds ratio 4.24, 95% confidence interval 4.21-4.27; P < 0.001) in PET and 3.4% vs. 1.9% (1.65, 1.12-2.43; P = 0.011) in the overall study population. The estimated mortality at one year was respectively 85% vs. 83.7% (hazard ratio 2.76, 1.26-6.04; P = 0.011) and 14.5% vs. 15.1% (0.89, 0.72-1.09; P = 0.251). The mean difference in EDMCQ before and after the study period was 0.02 points (- 0.18 to 0.23; P = 0.815). CONCLUSION: This study suggests that coaching doctors regarding ethical decision-making in teams safely improves goal-oriented care operationalized via written DNI-DNACPR decisions in hospitalized patients, however without concomitantly improving the quality of the ethical climate.

South African palliative care provider perspectives on emergency medical services in palliative situations.

Introduction: Due to the frequent intersection of Emergency Medical Services (EMS) with palliative situations and the increasing global need for palliative care, there has been increased recognition of the need for palliative care integration with EMS. However, EMS and palliative care systems remain segregated in many Low-to-Middle Income Country contexts, as in South Africa (SA). The aim of this study was to gather perspectives of palliative care providers in SA concerning EMS in palliative situations. Methods: A qualitative design employing individual semi-structured interviews was implemented. Ten interviews with experienced doctors and nurses holding post-graduate palliative medicine qualifications were conducted. Verbatim transcriptions of interviews were subjected to content analysis with an inductive-dominant approach to develop codes and categories. Results: Four categories were developed: (1) Disposition towards EMS, (2) Perceived EMS challenges, (3) Positive EMS impact across patients' palliative care journeys and (4) Methods of EMS and palliative care system integration. Participants maintained an overall positive view of EMS and palliative care integration, noting the beneficial impact of EMS and suggesting various methods of integration, while also highlighting challenges and concerns. Conclusion: EMS and palliative care integration would be mutually beneficial to both systems while benefiting patient well-being and the broader healthcare system. Potentially low-cost, high-impact interventions suggested by participants, such as palliative care cards for patients and enhancing EMS and palliative care system communication, represent efficacious and judicious use of limited resources within the SA context. Pilot studies investigating these suggestions should be conducted.

Experiences and access of palliative and end of life care for older people from minority ethnic groups: a scoping review.

BACKGROUND: Many older people from minority ethnic groups experience inequalities towards the end of life, including barriers to accessing palliative care. With levels of international migration increasing, there is a need to understand these differences and consider the needs of minority ethnic groups in healthcare policies. This review aimed to map evidence on how older people from minority ethnic groups access and utilise palliative and end of life care, preferences for palliative and end of life care, experiences of palliative and end of life care, and how this varies between minority ethnic groups in different countries, and with different health conditions. METHODS: Scoping review, following Joanna Briggs Institute (JBI) guidance. Searches of eight online databases (MEDLINE, Embase, Web of Science, CINAHL, PsycInfo, Assia, Scopus, and the Cochrane Library) and grey literature were undertaken in 2024. Qualitative sources that focused on older people from minority ethnic groups' and carers' access to and use of palliative and end of life care were included, as well as those focusing on healthcare professionals' experiences. RESULTS: Twenty-three sources were included in the review, the majority of which were interview studies from the USA. Findings reflect a range of preferences, inequalities, facilitators and barriers to accessing palliative and end of life care, with themes relating to: (1) Knowledge of hospice and palliative care, (2) societal and structural issues, (3) language and health literacy, (4) migratory experiences, (5) trust in healthcare services and professionals, (6) religion and hope, and (7) cultural values. CONCLUSIONS: This review identified areas for healthcare providers to consider developing more culturally appropriate palliative and end of life care practice, including building trust and improving communication, sharing information, reducing language barriers, addressing stigma, and, if relevant, acknowledging the importance of culture and religion. Further qualitative research from an intersectional perspective, such as geographical location or socio-economic status, rather than race, ethnicity, and culture alone, is needed in more diverse geographical settings and on specific health conditions.

"Veterinary medicine is not finished when I have diagnosed an incurable disease, that's when it starts for me." A qualitative interview study with small animal veterinarians on hospice and palliative care.

In the wake of recent medical developments in small animal practice, curing animals of their illnesses and restoring their health can be realized better than ever before. However, the growing medical possibilities are also leading to an increase in demand for better care for patients suffering from terminal illnesses. Consequently, the field of animal hospice and palliative care has become increasingly available, enabling veterinarians to optimize the quality of life of patients, such as dogs and cats, who no longer have a prospect of full recovery. Using qualitative, semi-structured interviews with 20 small animal veterinarians involved in hospice and palliative care, we investigated the factors that motivate veterinarians to become involved in hospice and palliative care and explored the importance of relationships, communication, time and infrastructure in this area. Findings show that personal experiences with their own pets or during training or work life motivated veterinarians to provide this service. Although veterinarians highlighted the importance of empathetic-driven relationships, they were aware that keeping an emotional distance from the patient and caregiver is significant to provide successful care. Further, veterinarians emphasized their high investment of time that resulted primarily from the increased frequency and provided opportunities to communicate with caregivers. The overall conclusion is that having time for patients and the patients' caregivers is one of the most important aspects of work in this field. However, as it will be also shown, veterinarians must consider aspects of self-care management by reflecting on their own time and energy resources while caring for animals and their caregivers.

An Authentic Learning Experience for Medical Students on Conducting a Family Meeting.

BACKGROUND: Medical schools often lack training for serious illness conversations with patients and caregivers. We developed a curriculum in our elective Transitioning to Residency medical student course, focused on end-of-life discussions. This paper provides an overview of the curriculum and outcomes from an advanced preparation assignment and student evaluations. METHODS: The curriculum included a "hands-on" skills session delivered via Zoom. Small groups of students (3-4) assumed roles on an interprofessional team (Intensivist, cardiologist, nurse, social worker). They met with two adult children, played by palliative/geriatric clinical staff, of a 79-year-old patient with a complex cardiac history and on ventilator support to address: (1) the patient's status, (2) goals of care, and (3) withdrawal of ventilator support. Using a flipped classroom format, students reviewed the case, role assignments, a family meeting webinar, and other materials in advance. They completed a survey reflecting on the upcoming family meeting. Afterwards, students evaluated the session. RESULTS: Eighty students (19.6%) participated in 2021 and 2022. The reflection survey shows students agreed the patient's prognosis was poor and decision-making should be shared. They anticipated difficulty accepting prognosis, discordance between family members and/or the team, and challenging emotions. Results show a difference between the anticipated roles of the assigned physicians compared to the other disciplines. Post-session evaluations ranged from 4.7 to 4.9/5 (1 = strongly disagree, 5 = strongly agree). CONCLUSION: The pre-session reflection helped students prepare for their roles. The training was well received, and we hope it prepares students to take on serious illness discussions during residency.

The gap between expectations and reality in advance care planning in long-term care settings.

BACKGROUND: Advance care planning (ACP) is an integral part of good quality end-of-life care. This study aimed to explore the role and practice of ACP among health and social care professionals (HSCPs) in a community long-term care facility. METHODS: This was a mixed-methods study. The study purposefully sampled 12 HSCPs from one community long-term care facility in Macao, China. All data were collected in November 2022. RESULTS: Some participants had discussed with terminally ill residents or with families in terms of end-of-life care preferences, the average correct rate of ACP knowledge was 67.4%. Interview data showed that HSCPs were primarily concerned with information-giving. The responsibility of decision-making was found to have been placed predominantly on family members of the residents. CONCLUSION: Study findings raised awareness in that the execution of ACP has remained in discord with the expectations in practicing ACP. The study illuminated that the perceived sense of responsibility among HSCPs was influenced by the potential legal risks involved and consequentially impacted on the adherence to individual's decisions.

Nurses' attitude toward futile treatment and its relationship with missed care at the end of life.

BACKGROUND: Avoiding futile treatment for patients at the end of life is among one of the care challenges of nurses in intensive care units (ICUs). AIMS: This study aimed to determine the attitude of intensive care unit nurses toward futile treatment and its relationship with missed care for patients at the end of life. METHOD: This cross-sectional study was conducted on 307 ICU nurses. Eleven teaching hospitals were selected from three Iranian provinces, Zanjan Province, East Azerbaijan and West Azerbaijan, in 2021. The data were collected using The Attitudes Toward Futile Treatment Scale (ATFTS) and The Missed Nursing Care Survey (MISSCARE Survey) as self-reports. RESULTS: According to the obtained results, 94.8% of the nurses agreed that futile treatment should not be performed. However, 97.7% of the nurses reported that missed care occurs less for patients at the end of life. The correlation between the MISSCARE Survey's total scale and the ATFTS's total scale was positive and statistically significant (r =.11). CONCLUSION: This research contributes to understanding nurses' attitudes toward futile treatment. Nurses oppose futile treatment, so obstacles to avoiding it should be eliminated. This attitude does not have a significant impact on nursing care quality or missed care for patients at the end of life, but it can lead to enduring distress for nurses. It is recommended to study the reasons for futile treatment, and its link to nurses' mental and physical health.

Exploring Sustainable Approaches for Electronic Textile Products and Prototypes.

This research investigated the sustainability of textile garments with integrated electronics and their potential impact on the environment. The electronic textiles (E-textiles) sector is booming, with many advancements in E-textile product designs and construction methods having been made in recent years. Although there is a rapidly increasing interest in the reusability and sustainability of textiles, work towards E-textile sustainability requires further attention. Vastly different components are combined when constructing an electronic textile product, which makes it challenging at the end of the life of these products to dispose of them in a responsible way. In this study, a teardown analysis was conducted using a structured method, which first mapped out the interactions between each component of the product with the environment, followed by using Kuusk's sustainable framework to analyze sustainable strategies. The research provides a unique contribution to transitioning sustainability theories into practical applications in the area of E-textiles, and the method proposed in this work can be employed in modifying electronics-embedded textiles to improve longevity and reduce the negative environmental impact. The work has highlighted key points of improvement that could be applied to a series of commercial E-textile garments, as well as a prototype E-textile device. Beyond this, the work provides a systematic approach for implementing new E-textile product designs that can evaluate overall product sustainability from the design stage to material selection, construction, and the planning of the commercial approaches of a product.

Paying for advance care planning in medicare: Impacts on care and spending near end of life.

Spending at end of life (EOL) accounts for a large and growing share of healthcare expenditures in the US, and often reflects aggressive care with questionable value for dying patients. Using a novel instrumental variables approach, we conduct the first study on the causal effect of Medicare reimbursement for advance care planning (ACP)-the process of discussing and recording patient preferences for goals of care-on care utilization, spending, and mortality outcomes for critically ill Medicare patients. We find that billed ACP services substantially increase hospice use and hospice spending within a year, accompanied by corresponding increase in one-year mortality. The impacts of ACP services on hospice use and spending are especially prominent among patients with dementia and those of lower socioeconomic status. Among decedents, death is significantly less likely to occur in the hospital, and total and inpatient spending within the last 30 days of life fall significantly. Our findings suggest that paying for ACP services can be effective in improving hospice use for critically ill Medicare patients, with the (possibly intended) consequence of increased one-year mortality.

Racial, Ethnic, and Socioeconomic Differences in Critical Care Near the End of Life: A Narrative Review.

Patients from groups that are racially/ethnically minoritized or of low socioeconomic status receive more intensive care near the end of life, endorse preferences for more life-sustaining treatments, experience lower quality communication from clinicians, and report worse quality of dying than other patients. There are many contributory factors, including system (eg, lack of intensive outpatient symptom management resources), clinician (eg, low-quality serious illness communication), and patient (eg, cultural norms) factors. System and clinician factors contribute to disparities and ought to be remedied, while patient factors simply reflect differences in care and may not be appropriate targets for intervention.

"You close the door, wipe your sadness and put on a smiling face": a qualitative study of the emotional labour of healthcare professionals providing palliative care in nursing homes in France.

BACKGROUND: Palliative care provided to frail and dying older persons in nursing homes results in intense emotions for residents and their relatives as well as for healthcare professionals. In France, scant attention has been given to how nursing home professionals manage their emotions when providing palliative care. This study analysed the emotional demands of providing palliative care in the nursing home context, the emotional strategies used by healthcare professionals to navigate such demands, and how these demands affect their emotional wellbeing. METHODS: This qualitative study used a multiple case study approach. We purposively selected nine nursing homes from three geographical provinces in France with diverse ownership statuses (public, private, associative). Individual interviews and focus group discussions were held with 93 healthcare professionals from various occupational groups employed in the participating nursing homes. Data was collected from April 2021 to September 2022 and was analysed using thematic content analysis. RESULTS: Data revealed that providing palliative care to dying residents within the nursing home context results in intertwined rewarding and exhausting emotional experiences for healthcare professionals. Professionals have to utilize multifaceted emotional strategies to navigate these experiences, including suppressing and modifying emotions and distancing themselves emotionally from residents to protect themselves from emotional suffering. Participants noted a lack of formal space to express emotions. Unrecognized emotional labour undermines the wellbeing of healthcare professionals in nursing homes, whereas acknowledging emotions enhances satisfaction and gives enhanced meaning to their crucial role in resident care. CONCLUSION: Acknowledging emotional labour as an inevitable component of providing palliative care in nursing homes is critical to supporting healthcare professional wellbeing, resilience, and retention, which may ultimately improve the quality of care for dying residents. Ensuring quality care and supporting the emotional wellbeing of nursing home professionals requires an organisational culture that considers emotional expression a collective strength-building resource rather than an individual responsibility, in hopes of shaping a new culture that fully acknowledges their humanity alongside their professional skills. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT04708002; National registration: ID-RCB number: 2020-A01832-37, Registration date: 2020-12-03.

Registry study of cardiovascular death in Sweden 2013-2019: Home as place of death and specialized palliative care are the preserve of a minority.

Background: Palliative care needs in patients with cardiovascular diseases (CVD) are expected to increase. For the planning of equitable palliative care, it is important to understand where people with CVD die. The aim was to examine trends in place of death, associated factors including utilization of specialized palliative services, and to what extent longitudinal development is influenced by national policy. Methods: A population-level registry study of place of death for adults deceased due to CVD (n = 209 671) in Sweden 2013-2019. Linear regression analysis was applied. Results: The predominant place of death was nursing home (39.1 %) and hospital (37.6 %), followed by home (22.0 %). From 2013 to 2019 home deaths increased by 2.8 % and hospital deaths decreased by 3.0 %. An overall downward trend was found for dying in hospital compared to dying at home. With variations, this trend was seen in all healthcare regions and for all CVD types, except Stockholm and cerebrovascular disease, with no significant trend. Overall, but with cross-regional variations, 2.1 % utilized specialized palliative services, while 94.2 % had potential palliative care needs. Other variables significantly influencing the trend were age and having had an unplanned healthcare visit. Conclusion: Despite a slight positive trend, only a minority of people with CVD die in their own home. Regional variations in place of death and the low and varied utilization of specialized palliative services indicate inequity in access to palliative care. Hence, the impact of current national policies is questionable and calls for strengthening through inclusion of early palliative care in specific CVD policies.

The association of compassion with dignity and symptoms in end-of-life cancer patients.

OBJECTIVES: Compassion is essential in palliative care; however, there is a lack of evidence of the association between this construct and patients' dignity-related distress. The present study aimed to investigate the association between end-of-life cancer patients' sense of dignity, the level of compassion of the healthcare professionals (HCPs) noticed and perceived by the patients, and levels of compassion that HCPs felt they had toward patients, investigating through specific attitudes and behaviors. Furthermore, the relationship between compassion and patients' physical and psychological symptoms, such as levels of anxiety and depression, was also investigated. METHODS: The study was cross-sectional. The sample consisted of 105 end-of-life cancer patients and 40 HCPs. Patients had a Karnofsky Performance Status of 50 or lower and a life expectancy of less than 4 months. For each patient, sociodemographic data were collected, and a set of rating scales assessing compassion, dignity as well as physical and psychological symptoms were administered. RESULTS: The results showed significant negative associations between patients' perception of compassion and dignity-related distress as well as significant negative associations between patients' perception of compassion and patients' symptoms. SIGNIFICANCE OF RESULTS: Compassion seems to be involved in diminishing dignity-related distress and alleviating physical and psychological symptoms. Other studies are needed to understand whether patients' symptoms or whether specific HCPs' conditions influence compassion. Exploring compassion and at the end-of-life could encourage a dignity-conserving care.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients Under Guardianships.

Palliative care clinicians often help facilitate coordination of care, complex serious illness, and end-of-life medical decision-making. However, the clinical and legal issues related to guardianship can complicate the decision-making process, care delivery, outcomes, and the role of the palliative care clinician. Adult patients who have a guardian have been found by a court to be unable to make some or all decisions for themselves. Providing care for patients under guardianship is where medicine overlaps with legal rights. It is crucial to be familiar with the patients' rights and the guardians' responsibilities to clarify medical decision-making processes and identify necessary authorities. This article uses an interprofessional approach to leverage the expertise of physicians, nurses, lawyers, and guardians and to guide palliative care clinicians to optimally support patients under guardianship.