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Background: Modeled after the Physician Orders for Life Sustaining Treatment program, the Veterans Health Administration (VA) implemented the Life‐Sustaining Treatment (LST) Decisions Initiative to improve end‐of‐life outcomes by standardizing LST preference documentation for seriously ill Veterans. This study examined the associations between LST documentation and family evaluation of care in the final month of life for Veterans in VA nursing homes. Methods: Retrospective, cross‐sectional analysis of data for decedents in VA nursing homes between July 1, 2018 and January 31, 2020 (N = 14,575). Regression modeling generated odds for key end‐of‐life outcomes and family ratings of care quality. Results: LST preferences were documented for 12,928 (89%) of VA nursing home decedents. Contrary to our hypothesis, neither receipt of wanted medications and medical treatment (adjusted odds ratio [OR]: 0.85, 95% confidence interval [CI] 0.63, 1.16) nor ratings of overall care in the last month of life (adjusted OR: 0.96, 95% CI 0.76, 1.22) differed significantly between those with and without completed LST templates in adjusted analyses. Conclusions: Among Community Living Center (CLC) decedents, 89% had documented LST preferences. No significant differences were observed in family ratings of care between Veterans with and without documentation of LST preferences. Interventions aimed at improving family ratings of end‐of‐life care quality in CLCs should not target LST documentation in isolation of other factors associated with higher family ratings of end‐of‐life care quality. [ABSTRACT FROM AUTHOR]

Background: Racial and ethnic minorities often receive care at different hospitals than non‐Hispanic white patients, but how hospital characteristics influence the occurrence of disparities at the end of life is unknown. The aim of this study was to determine if disparities in end‐of‐life care were present among minoritized patients during terminal hospitalizations, and if these disparities varied with hospital characteristics. Methods: We identified hospitalizations where a patient died in New York State, 2016–2018. Using multilevel logistic regression, we examined whether documented end‐of‐life care (do‐not‐resuscitate status (DNR), palliative care (PC) encounter) differed by race and ethnicity, and whether these disparities differed based on receiving care in hospitals with varying characteristics (Black or Hispanic‐serving hospital; teaching status; bed size; and availability of specialty palliative care). Results: We identified 143,713 terminal hospitalizations in 188 hospitals. Across all hospitals, only Black patients were less likely to have a PC encounter (adjusted odds ratio (aOR) 0.83 [0.80–0.87]) or DNR status (aOR 0.91 [0.87–0.95]) when compared with non‐Hispanic White patients, while Hispanic patients were more likely to have DNR status (aOR 1.07 [1.01–1.13]). In non‐teaching hospitals, all minoritized groups had decreased odds of PC (aOR 0.80 [0.76–0.85] for Black, aOR 0.91 [0.85–0.98] for Hispanic, aOR 0.93 [0.88–0.98] for Others), while in teaching hospitals, only Black patients had a decreased likelihood of a PC encounter (aOR 0.88 [0.82–0.93]). Also, Black patients in a Black‐serving hospitals were less likely to have DNR status (aOR 0.80 [0.73–0.87]). Disparities did not differ based on whether specialty PC was available (p = 0.27 for PC encounter, p = 0.59 for DNR status). Conclusion: During terminal hospitalizations, Black patients were less likely than non‐Hispanic White patients to have documented end‐of‐life care. This disparity appears to be more pronounced in non‐teaching hospitals than in teaching hospitals. [ABSTRACT FROM AUTHOR]

LGBTQ+ people experience higher burdens of life-limiting illnesses, poorer health outcomes, and multilevel barriers to accessing palliative, end-of-life, and bereavement care. High quality evidence is needed to inform interventions to address these inequities, and inform inclusive practices and policies. Despite global initiatives to improve availability of peer-reviewed journal articles, the minority of research is open access (OA). We aimed to evaluate accessibility of literature related to LGBTQ+ inclusive palliative, end-of-life, and bereavement care. A rapid review of the evidence regarding LGBTQ+ inclusive palliative, end-of-life, and bereavement care was conducted; OA status of identified articles was assessed. Articles from three published systematic reviews were included (2012, 2016, and 2020). Review articles were updated using the original search and inclusion/exclusion strategies. 66 articles related to LGBTQ+ inclusive palliative, end-of-life and bereavement care were identified between 1990-2022. Of these, only 21% (n =14) were OA. Of the OA articles, 79% were published between 2017 and 2022, and 50% were published between 2020-2022, reflecting more recent shifts towards OA publishing. Health and social care professionals and policy makers rely on access to high quality evidence to inform their work. Failing to make articles related to the needs of LGBTQ+ people and populations OA risks further marginalisation and worsened inequities. Innovative journal policies and funding are needed to enable access, particularly for research that foregrounds the needs of marginalised communities. Where articles are currently behind paywalls, there is a need for accessible summaries or policy briefs to inform inclusive policy and practice. [ABSTRACT FROM AUTHOR]

Delirium is a significant concern in end-of-life care. Continuous monitoring of agitation levels using objective methods may have advantages over existing measurement scales. To examine whether an objective measure of activity scores measured using a sheet-type non-wearable sensor (Nemuri SCAN [NSCAN]) was correlated with agitation levels measured using the modified Richmond Agitation-Sedation Scale (RASS) in terminally ill patients with cancer. We conducted a single-center, prospective, observational study in a palliative care unit using the NSCAN to measure activity scores and the RASS to assess agitation levels. RASS scores were prospectively measured by ward nurses blinded to the NSCAN variables. A database was created to pair the RASS scores and activity scores at night on the same day. During the observation period, 1209 patients were hospitalized, and 3028 pairs of assessments of 971 patients were analyzed. The NSCAN activity scores significantly increased with increasing RASS scores (Jonckheere–Terpstra test, p < 0.001). The mean values of the activity scores for each RASS score were RASS −5, 28.9; RASS −4, 36.4; RASS −3, 41.7; RASS −2, 57.4; RASS −1, 58.8; RASS 0, 62.6; RASS 1, 79.6; RASS 2, 106.5; and RASS 3, 118.7. The NSCAN activity significantly correlated with modified RASS agitation scores. Real-time NSCAN data on agitation may aid timely interventions for optimal symptom control. To improve outcomes for patients suffering from terminal delirium, more research on monitoring tools is warranted. [ABSTRACT FROM AUTHOR]

As patients approach the end of life, discussion of their treatment goals is essential to avoid unnecessary suffering and deliver care in a manner consistent with their overall values. Implement a multipronged approach to improve the rates of advance care planning (ACP) documentation among providers admitting patients with cancer to the intensive care unit (ICU) from the emergency department (ED). We developed multiple interventions including the development of a best-practice advisory to alert providers when patients had previous do-not-resuscitate orders; standardization of ACP documentation; early oncologist involvement in goals-of-care conversations with patients; a survey of ED providers to identify barriers to success; and positive reinforcement strategies aimed at improving the rates of ACP documentation in patients admitted from the ED to the ICU. Prior to our interventions, only 13% of patients admitted to the ICU from the ED had ACP notes. This percentage increased to 90% by the last month of our project. Through our multipronged approach, we significantly improved the rates of ACP documentation among providers admitting patients from the ED to the ICU. [ABSTRACT FROM AUTHOR]

The article focuses on the effectiveness of the Preference-Aligned Communication and Treatment (PACT) project in increasing goals of care conversations for hospitalized patients. Topics include the impact on alignment between patient preferences and received care, reduced end-of-life resource use and costs, and the significant engagement of diverse healthcare staff in facilitating these conversations.

Progression of ill health and death trajectories is different for children with a non-oncology diagnosis. As previous research has focused primarily on children with cancer diagnoses, this scoping review explored what factors influence the parent and/or child's choice of place of death for a child with a non-oncological complex care condition, when death is expected. Eighteen papers were identified considering the preferred place of death. The findings were themed into 1. Diagnostic Factors; 2. Home Factors; 3. Socio-economic Factors; 4. Parent Factors. In conclusion, informed discussions with families that recognize the reason for, and the impact of their choices, are necessary not only for the preferred place of death but also end of life care. [ABSTRACT FROM AUTHOR]

With advances in medicine, HIV has evolved into a chronic condition for people living with HIV (PLWH). However, many PLWH do not engage in advance care planning (ACP), and it occurs primarily in acute situations. ACP may improve preparedness for end-of-life care and increase advance directive (AD) documentation. Searches of PubMed, PsycInfo, and CINHAL were conducted to synthesize current ACP-related randomized controlled trials on two separate populations: (1) PLWH and (2) older adults without HIV. Two articles met inclusion criteria for PLWH, and the intervention had a significant improvement in ACP engagement. For the latter population, thirteen of fourteen articles had interventions that led to statistically significant increases in ACP engagement. This review underscores the need to further investigate the best strategies to improve ACP among PLWH and provides insights from existing ACP interventions for the general population to be adapted to the needs of PLWH. [ABSTRACT FROM AUTHOR]

Quality of life has become a central value in the provision of healthcare for patients with chronic conditions. This has engendered debates in critical medical sociology on the non-neutral effects that valuing health and illness, medical interventions, and health care delivery in terms of quality of life yields. Focusing on the case of nephrology, this paper presents qualitative data collected in Austria of two dialysis units in which nephrologists initiated projects aimed towards 'the improvement of patients' quality of life'. Whereas the first involved nurses supporting patients in the administration of peritoneal dialysis at home, the second implied the provision of treatment and care exclusively focused on a well-being 'in the here and now' to patients. By conceptualising physicians as actors within networks of relations and values enacted in practices, it analyses how in both dialysis units reference to quality of life enabled nephrologists to problematise the provision of standard haemodialysis treatment to multi-morbid, elderly patients, to develop a new treatment protocol, and to interest and enrol others in the provision of healthcare according this new protocol. Valuing medical interventions in terms of quality of life not only leads to a governmentalization of living and an economisation of health. It also allows physicians to articulate a socio-medico-ethical problem – the availability of life-prolonging technologies for a growing population of elderly, multi-morbid patients – and develop solutions locally. What the solutions consist in may fundamentally differ, however. [ABSTRACT FROM AUTHOR]

Purpose: Oral alterations are frequently observed in patients undergoing palliative care and are linked to the direct or indirect effects of the primary medical condition, comorbidities and medical management, leading to oral pain, impacting oral intake, and affecting quality of life. This systematic review aims to assess the prevalence of oral disease in palliative care patients. Methods: The protocol was registered at the PROSPERO database, and a systematic review of the literature was performed based on the PRISMA statement. A thorough evaluation of studies from five databases and gray literature was conducted. The risk of bias in each study was assessed using the Joanna Briggs Institute checklist for cross-sectional and case-control studies. A quantitative analysis was conducted on five studies using meta-analysis, and the degree of certainty in the evidence was determined using the GRADE tool. Results: The sample consisted of 2,502 patients, with a slight male predominance (50.43%). The average age was 66.92 years. The prevalence of oral diseases among palliative care patients was as follows: caries 32% (95% CI, 0.11-0.56; I2 = 93%), and oral candidiasis 17% (95% CI,0.11-0.25; I2 = 74%). Gingivitis and stomatitis were also reported, but with less frequency. Conclusion: Dental intervention should take place as early as possible, ideally from the time of the patient's initial admission to palliative care, with regular monitoring of oral health. This approach can enhance the patient's comfort and quality of life and help prevent more severe complications in the future. [ABSTRACT FROM AUTHOR]

Objective: To explore district nurses' experiences in providing terminal care to patients and their families until death in a private home setting. Design, setting and subjects: Qualitative study. Data derived from focus group discussions with primary nurses in The Faroe Islands. Results: Four themes were identified: 'Challenges in providing terminal care', 'The importance of supporting families', 'Collaborative challenges in terminal care' and 'Differences between rural districts and urban districts'. The nurses felt that terminal care could be exhausting, but they also felt the task rewarding. Involving the family was experienced as a prerequisite for making home death possible. Good collaboration with the local GPs was crucial, and support from a palliative care team was experienced as helpful. They pointed out that changes of GP and the limited services from the palliative care team were challenging. Structural and economic conditions differed between urban and rural districts, which meant that the rural districts needed to make private arrangements regarding care during night hours, while the urban districts had care services around the clock. Conclusion: Our findings underline the complexity of terminal care. The nurses felt exhausted yet rewarded from being able to fulfil a patient's wish to die at home. Experience and intuition guided their practice. They emphasised that good collaboration with the GPs, the palliative care team and the families was important. Establishing an outgoing function for the palliative care team to support the nurses and the families would increase the scope for home deaths. Working conditions differed between rural and urban districts. KEY POINTS: District nurses are key providers of care for people dying in a home care setting. Collaboration with family is essential for making home death possible. Taking care of dying patients is experienced as exhausting but also meaningful. There is a need for an outgoing palliative care team to include all patients regardless of disease. [ABSTRACT FROM AUTHOR]

Registered nurses report the experience of delivering end of life care in emergency departments as challenging. The study aim was to understand what it is like to be a registered nurse providing end of life care to an older person in the emergency department. A hermeneutic phenomenological study was conducted in 2021, using semi-structured interviews with seven registered nurses across two hospital emergency departments in Queensland, Australia. Thematic analysis of participants' narratives was undertaken. Seven registered nurses were interviewed; six of whom were women. Participant's experience working in the emergency department setting ranged from 2.5–20 years. Two themes were developed through analysis: (i) Presenting the patient as a dying person; and (ii) Mentalising death in the context of the emergency department. Nurses providing end of life care in the emergency department draw upon their personal and aesthetic knowing to present the dying patient as a person. The way death is mentalised suggests the need to develop empirical knowing about ageing and supportive medical care and ethical knowing to assist with the transition from resuscitation to end of life care. Shared clinical reflection on death in the emergency department, facilitated by experts in ageing and end of life care is recommended. [ABSTRACT FROM AUTHOR]

Objectives: The Supportive and Palliative Care Indicators Tool (SPICT™) has been used to identify patients at risk of deteriorating and dying within 1 year. Early identification and integration of advance care planning (ACP) provides the opportunity for a better quality of life for patients. The aims of this study were to identify the number of patients who were SPICT™ positive; their mortality rates at 6 and 12 months of the SPICT™ assessment; and level of adherence to ACP documentation. Methods: A retrospective audit of the Supportive and Palliative Care database was conducted at an acute aged care precinct in a major metropolitan tertiary referral hospital in New South Wales, Australia. Data comprising demographics, clinical conditions, SPICT™ positivity and compliance with ACP documentation were collected. SPICT™‐positive patients and mortality were tracked at 6 and 12 months, respectively. Results: Data from 153 patients were collected. The mean age of the patients was 84.1 (±7.8) years, and the length of hospital stay was 10 (±24.7) (range 1–269) days. Approximately 37% were from residential care, and 80% had family deciding on their care. About 15% died during hospitalisation, and 48% were discharged to a care facility. The ACP documentation showed various levels of completion. Mortality rates at 6 and 12 months were 36% and 39%, respectively. Most patients (99%) were SPICT™‐positive, with indicators correlating with higher mortality rates at both follow‐ups. Conclusions: The study emphasises the critical need for addressing ACP and palliative care among older patients with life‐limiting conditions. It underscores the importance of timely discussions, documentation, and cessation of futile interventions. [ABSTRACT FROM AUTHOR]

Introduction: Little is known about the identity and moral experience of clinicians who provide the option of aid in dying to terminally ill Americans. Methods: In May 2023 we distributed an email survey to clinicians registered for the American Clinician's Academy on Medical Aid in Dying listserv. Results: Of the 72 clinicians who responded, 90% were of white race, 50% were over 60 years old, and 47% had been in practice for over 20 years. Most clinicians report practicing primary care (39%) or hospice/palliative care (33%); 25% of clinicians had training in palliative medicine. 22% described their practice as a specialized "aid-in-dying practice" and 26% either "rarely" or "never" cared for the terminally ill outside the context of aid in dying. A majority (56%) of clinicians were either affiliated with an independent practice or unaffiliated. Before they began aid-in-dying work, 26% of clinicians reported having felt "somewhat" or "very" morally conflicted; after having written an aid in dying prescription, 96% felt "hardly" or "not at all" conflicted. On average, clinicians felt that aid-in-dying laws balance protection of patients with access; 39% believed that the laws were "somewhat" or "overly" protective. Conclusion: Many responding clinicians report caring for patients considering aid in dying in specialized practices or otherwise in unaffiliated or independent practice. Clinicians report that providing aid in dying (and writing an aid-in-dying prescription) resulted in less reported moral conflict toward aid in dying. [ABSTRACT FROM AUTHOR]

Study Design: Literature review with clinical recommendation. Objective: A concise curation of the latest spine literature exploring the relationship between expectations and satisfaction for patients with metastatic spinal disease (MSD). Deliver recommendations to practicing clinicians regarding interpretation and utilisation of this evidence. Methods: The latest spine literature in the topic of factors affecting the expectations of patients with MSD was reviewed and clinical recommendations were formulated. Recommendations are graded as strong or Conditional. Results: 5 articles were selected. Article 1: risk factors for the development of dissatisfaction from a cohort of 362 MSD patients. Strong recommendation to incorporate risk factor assessment when considering treatment. Article 2: systematic review assessing the relationship between pre-operative patient expectations and subsequent satisfaction in allied disciplines. Conditional recommendation to optimize patient expectation to positively modify patient satisfaction. Article 3: qualitative study of how clinicians, from different specialties, counsel patients with MSD pre-treatment. Strong recommendation to use a multidisciplinary approach. Article 4 qualitative study of how MSD patients experience their pre-treatment counselling and how that affected their appreciation of treatment success. Conditional recommendation to furnish patients with tailored, expected outcomes in the context of systemic progression. Article 5 Design and validation of a pre-treatment questionnaire specific to MSD. A conditional recommendation to incorporate this questionnaire in clinical and research MSD practice. Conclusion: Patients with MSD are approaching end of life care and high levels of treatment satisfaction are crucial at this juncture. The role of expectation management and comprehensive counselling is critical. [ABSTRACT FROM AUTHOR]

Comprehending the significance of legacy in end-of-life (EoL) situations helps palliative care professionals enhance person-centered outcomes for those with a life-threatening illness and their families. Our purpose was to conduct a concept analysis of legacy in EoL care. By employing Walker and Avant's approach, we identified the concept's defining characteristics. Subsequently, we established the antecedents, consequences, and empirical referents. After conducting a thorough review of titles and abstracts, a total of 30 publications were analyzed. These articles were sourced from three databases (CINAHL, Medline via PubMed, and Scopus) from 2002 to 2023. Our analysis identified several core attributes of legacy: (a) leave behind something of value that transcends death; (b) determine how people want to be remembered; (c) build and bestow across generations; (d) integrate advance care planning through EoL conversations and shared decision-making; and (e) develop strategies of dignity-conserving care. The consequences are related to improvements in spiritual and subjective well-being; coping with inevitable EoL existential issues; decreases in EoL suffering; engendering self-awareness, hope, gratitude, and peace; achieving and maintaining dignity; creating good memories; promoting mutually constructive and transformative relationships; and fostering the adjustment of bereaved people. Nevertheless, further effort is required to implement the key attributes of legacy that form the basis for creating legacy-oriented interventions near the EoL. [ABSTRACT FROM AUTHOR]

The aim of this study was to qualitatively describe, from a practitioner's perspective, the process by which nurses struggle to support a patient with end-of-life cancer with frequent nurse calls and gain positive insights through two methodologies: AR and the case study method. The participants were four ward nurses who supported a patient receiving end-of-life cancer in his 80s. The participants engaged in monthly group work and practical training sessions, which included facilitators, to reflect on and develop care plans. Based on these activities, care was provided to the patient. After the intervention period, the patient's course and practice was documented and analysed qualitatively. The intervention significantly improved the nurses' ability to support inpatients with many needs through careful observation, enhancement, and practical skill improvement. This process resulted in a better understanding of patient needs, proactive skill development, enhanced team performance, and an innovative care-delivery system that resonated throughout the ward. This study demonstrated a successful strategy for nurses to improve support for high-need inpatients, emphasising the importance of attentive care, proactive skill improvement, and a team-based approach to healthcare innovation. [ABSTRACT FROM AUTHOR]

Background: Comfort‐focused nutrition orders are recommended to manage eating changes among long‐term care (LTC) residents nearing the end of life, though little is known about their current use. This investigation aims to describe current practices and identify resident‐level and time‐dependent factors associated with comfort‐focused nutrition orders in this context. Methods: Data were retrospectively extracted from resident charts of decedents (≥65 years at death, admitted ≥6 months) in 18 LTC homes from two sampling frames across southern Ontario, Canada. Observations occurred at 6 months (baseline), 3 months, 1 month and 2 weeks prior to death. Extracted data included functional measures (e.g. cognitive performance, health instability) at baseline, formalised restorative and comfort‐focused nutrition care interventions at each timepoint and eating changes reported in the progress notes in 2 weeks following each timepoint. Logistic regression and time‐varying logistic regression models determined resident‐level (e.g. functional characteristics) and time‐dependent factors (e.g. eating changes) associated with receiving a comfort‐focused nutrition order. Results: Less than one‐third (30.5%; n = 50) of 164 participants (61.0% female; mean age = 88.3 ± 7.5 years) received a comfort‐focused nutrition order, whereas most (99%) received at least one restorative nutrition intervention to support oral food intake. Discontinuation of nutrition interventions was rare (8.5%). Comfort orders were more likely with health instability (OR [95% CI] = 4.35 [1.49, 13.76]), within 2 weeks of death (OR = 5.50 [1.70, 17.11]), when an end‐of‐life conversation had occurred since the previous timepoint (OR = 5.66 [2.83, 11.33]), with discontinued nutrition interventions (OR = 6.31 [1.75, 22.72]), with co‐occurrence of other care plan modifications (OR = 1.48 [1.10, 1.98]) and with a greater number of eating changes (OR = 1.19 [1.02, 1.38]), especially dysphagia (OR = 2.59 [1.09, 6.17]), at the preceding timepoint. Conclusions: Comfort‐focused nutrition orders were initiated for less than one‐third of decedents and most often in the end stages of life, possibly representing missed opportunities to support the quality of life for this vulnerable population. An increase in eating changes, including new dysphagia, may signal a need for proactive end‐of‐life conversations involving comfort nutrition care options. Implications for Practice: Early and open conversations with residents and family about potential eating changes and comfort‐focused nutrition care options should be encouraged and planned for among geriatric nursing teams working in LTC. These conversations may be beneficial even as early as resident admission to the home. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic significantly interrupted the grieving experiences of bereaved families and drastically changed their ways of dealing with loss. Our study aims to gain an in-depth understanding of the experience of bereaved relatives of patients who died in palliative care units during the COVID-19 pandemic. The phenomenological research design included sixteen family members of hospitalized palliative patients who died from November 2021 to June 2022. The study involved conducting qualitative in-depth semi-structured interviews with family members 12–24 months after the death of their loved ones. The interviews aimed to gather information about the experiences of the families both before and after the death. The COREQ guidelines were applied in the study. Participants were mainly female (n = 13) with a mean age of 47.25 (SD = 12.58). Data were analysed using the Interpretative Phenomenology Analysis (IPA). The following three categories were identified: (1) navigating loved ones' final weeks and days (troubled deaths); (2) the last farewell was robbed; (3) looking for adjustment after loss. One overall main theme emerged, which was as follows: "Struggling between stolen moments and painful losses to get back into the flow of life". This study provides novel insights into end-of-life care and bereavement from the perspectives of family. Our findings suggest that developing and promoting family-centred culture can lead to compassionate palliative care focused on a myriad ways of affirming that their loved one matters. [ABSTRACT FROM AUTHOR]

This systematic review of art psychotherapy literature explored how art therapy or artmaking may support patient identity after a life-limiting diagnosis. Background: Previous research shows the value of art therapy and artmaking in reducing physical and psychological symptoms at the end-of-life. Recent reports indicated that disruption to identity is a key challenge to this group of individuals. Aims: This systematic review investigated art therapy and artmaking and examined and built upon previous research undertaken with patients facing identity concerns after a terminal diagnosis. Methods: A robust and rigorous framework of criteria (PRISMA), was followed to select and review suitable research papers in order to gain new insights. Results: The results indicate that many patients struggle to cope with a changing identity alongside the demands of a terminal illness. The key findings are threefold: art therapy and artmaking can help maintain or reconstruct a pre-illness identity and art therapy in particular can help enable a positive identity transformation. Conclusions: Art therapy and artmaking hold benefits for positive identity support such as the re-evaluation and reinstatement of pre-illness roles, psychosocial-interventions and adjustment to major life changes. Implications: It is recommended that art therapy and artmaking are offered to terminal patients at diagnosis, in order to support identity concerns promptly and allow patients to focus solely on their quality of life and limited time left. It is anticipated that the findings of this systematic review will be of benefit to patients, healthcare workers, art therapists and others within the palliative care community. Plain-language summary: This review of art therapy literature explored how art therapy or artmaking may support patient identity after a life-limiting diagnosis. Previous research has showed the value of art therapy and artmaking in reducing concerns at the end-of-life. Many reports indicated that changes to identity are one of the main challenges to this group of individuals. This review aimed to compare art therapy and artmaking. It examined and added to earlier research with patients struggling with identity concerns after a terminal diagnosis. A set of standards were followed to select and review appropriate research papers. Results showed that many patients struggled to cope with a changing identity alongside the difficulties of a terminal illness. Patients tried to keep an identity that was separate from their illness and also maintain their pre-illness roles. The main findings of this systematic review are that art therapy and artmaking can help keep or restore a pre-illness identity. Art therapy in particular can help bring about a positive identity change. The conclusions are that art therapy and artmaking are beneficial for supporting identity and help patients think about and recover their pre-illness roles. Art therapy and artmaking are also seen to help patients cope with major life changes. Recommendations are that further research is undertaken with larger, more varied groups of people, particularly males. It is recommended that art therapy and artmaking are offered to terminal patients when they are diagnosed. This would allow patients to focus on their wellbeing and their limited time left with loved ones. It is likely that the findings will be helpful to patients, healthcare workers, art therapists and others within palliative care. [ABSTRACT FROM AUTHOR]

BACKGROUND: Physician Orders for Life Sustaining Treatment (POLST) document instructions for intensity of care based upon patient care preferences. POLST forms generally reflect patients wishes and dictate subsequent medical care, but it is not known how POLST use and content among nursing home residents is associated with inpatient utilization across a large population. OBJECTIVE: Evaluate the relationship between POLST use and content with hospital utilization among nursing home residents in California. DESIGN: Retrospective cohort study using the Minimum Data Set linked to California Section S (POLST documentation), the Medicare Beneficiary Summary File, and Medicare line item claims. PATIENTS: California nursing home residents with Medicare fee-for-service insurance, 2011-2016. MAIN MEASURES: Hospitalization, days in the hospital, and days in the intensive care unit (ICU) after adjustment for resident and nursing home characteristics. KEY RESULTS: The 1,112,834 residents had a completed and signed (valid) POLST containing orders for CPR with Full treatment 29.6% of resident-time (in person-years) and a DNR order with Selective treatment or Comfort care 27.1% of resident-time. Unsigned POLSTs accounted for 11.3% of resident-time. Residents experienced 14 hospitalizations and a mean of 120 hospital days and 37 ICU days per 100 person-years. Residents with a POLST indicating CPR Full treatment had utilization nearly identical to residents without a POLST. A gradient of decreased utilization was related to lower intensity of care orders. Compared to residents without a POLST, residents with a POLST indicating DNR Comfort care spent 56 fewer days in the hospital and 22 fewer days in the ICU per 100 person-years. Unsigned POLST had a weaker and less consistent relationship with hospital utilization. CONCLUSIONS: Among California NH residents, there is a direct relationship between intensity of care preferences in POLST and hospital utilization. These findings emphasize the importance of a valid POLST capturing informed preferences for nursing home residents.

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

This study aimed to determine the needs of end-of-life cancer patients' and their nurses' perspectives and experiences regarding end of life period. A qualitative descriptive phenomenological study design was adopted comprising face-to-face, semi-structured interviews with patients and their nurses. Content analysis was conducted using the 'Induction' approach. 15 patients and 15 nurses participated in study. This study emerged three categories, nine themes for patients, and seven themes for nurses. Categories were determined according to the Donabedian model. The interviews revealed that although the nurses wanted to provide the necessary care, they could not accomplish it because of excessive workload, inadequately informed patients, and less than desired knowledge and education levels of the nurses and healthcare team. Improved care coordination and partnership working are essential for supporting both patient and their nurses at the end of life. [ABSTRACT FROM AUTHOR]

Introduction: Palliative home care is essential for terminally ill patients. This integrated approach is not limited to physical care, but also embraces the psychological, social and spiritual aspects of the patient. This model of care, focused on the patient and their family, aims to ensure quality health care during the advanced stage of a disease. In addition, by reducing the need for hospital admissions, palliative home care reduces costs, providing a sustainable alternative for the health system. Objective: To describe the knowledge related to the clinical, emotional and economic impact of palliative home care in cancer patients Materials and Methods: A narrative review was conducted using databases such as PubMed, Cinahl and Cochrane Library between December 2023 and March 2024, using the Population, Intervention, Outcome (PIO) methodology. The survey generated 551 articles, of which only 6 were relevant to the study. The selection of studies was guided by inclusion and exclusion criteria, with a quality assessment using the Dixon Woods instrument. Results: The studies included in the review have demonstrated a positive and significant impact of palliative home care on the well-being and quality of life of terminal cancer patients. Some of these studies have examined the clinical efficacy of such treatments in mitigating the patient's symptoms, with conflicting results: while some have shown positive efficacy, others have not found the same result. Regarding the cost-effectiveness, the analysis highlighted a lack of definitive evidence on the possible economic advantage of palliative home care compared to hospital care. Conclusions: Palliative home care emerges as a crucial element in the nursing care of the terminally ill cancer patient: it offers essential psychological support, enabling patients to feel understood and listened to with regard to their needs and requirements. However, there are some discrepancies, particularly with regard to economic effects and symptom control.

Objective To explore district nurses’ experiences in providing terminal care to patients and their families until death in a private home setting.Design, setting and subjects Qualitative study. Data derived from focus group discussions with primary nurses in The Faroe Islands.Results Four themes were identified: ‘Challenges in providing terminal care’, ‘The importance of supporting families’, ‘Collaborative challenges in terminal care’ and ‘Differences between rural districts and urban districts’. The nurses felt that terminal care could be exhausting, but they also felt the task rewarding. Involving the family was experienced as a prerequisite for making home death possible. Good collaboration with the local GPs was crucial, and support from a palliative care team was experienced as helpful. They pointed out that changes of GP and the limited services from the palliative care team were challenging. Structural and economic conditions differed between urban and rural districts, which meant that the rural districts needed to make private arrangements regarding care during night hours, while the urban districts had care services around the clock.Conclusion Our findings underline the complexity of terminal care. The nurses felt exhausted yet rewarded from being able to fulfil a patient’s wish to die at home. Experience and intuition guided their practice. They emphasised that good collaboration with the GPs, the palliative care team and the families was important. Establishing an outgoing function for the palliative care team to support the nurses and the families would increase the scope for home deaths. Working conditions differed between rural and urban districts.

Abstract 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.

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]

Introduction: Geriatric fracture is a pressing global health issue, marked by elevated mortality and morbidity rates and escalating health care costs. The evolving health care system from fee-for-service to quality-based reimbursement has led to externally driven reward and reimbursement systems that may not account for the complexity of caring for older adults with fracture. Significance: The aim of this review is to highlight the need for a shift towards meaningful metrics that impact geriatric fracture care and to issue a call to action for all medical societies to advocate for national reimbursement and ranking systems that focus on metrics that truly matter. Results: Traditional metrics, while easier to capture, may not necessarily represent high quality care and may even have unintentional adverse consequences. For example, the focus on reducing length of stay may lead to older patients being discharged too early, without adequately addressing pain, constipation, or delirium. In addition, a focus on mortality may miss the opportunity to deliver compassionate end-of-life care. Existing geriatric fracture care metrics have expanded beyond traditional metrics to include assessment by geriatricians, fracture prevention, and delirium assessments. However, there is a need to further consider and develop patient-focused metrics. The Age-Friendly Health Initiative (4 Ms), which includes Mobility, Medication, Mentation, and what Matters is an evidence-based framework for assessing and acting on critical issues in the care of older adults. Additional metrics that should be considered include an assessment of nutrition and secondary fracture prevention. Conclusion: In the realm of geriatric fracture care, the metrics currently employed often revolve around adherence to established guidelines and are heavily influenced by financial considerations. It is crucial to shift the paradigm towards metrics that truly matter for geriatric fracture patients, recognizing the multifaceted nature of their care and the profound impact these fractures have on their lives. [ABSTRACT FROM AUTHOR]

Background: Innovative small-scale facilities for dementia focus on providing quality of life and maintaining the functional abilities of residents while offering residents a home for life. To fulfill the home-for-life principle, palliative care approaches are necessary to maintain quality of life in these facilities. Few studies have reported on how palliative care is provided to residents in small-scale facilities. The aim of our review is to determine the extent to which palliative care approaches are reported in small-scale facilities. Methods: A scoping review of the literature using recommended methods from the Joanna Briggs Institute. Four databases, CINAHL, PubMed, PsycINFO, and Web of Science, were searched for studies published from 1995 to 2023. One reviewer completed the title, abstract and full-text screening and data extraction; two additional team members piloted the screening and extraction process and met with the main reviewer to make decisions about article inclusion and ensure consistency and accuracy in the review process. The extracted data was open-coded and analyzed using thematic analysis. The data was then synthesized into themes using palliative care domains for dementia. Results: Of the 800 articles obtained in the search, only ten met the inclusion criteria: six from Japan, two from the Netherlands, and one each from Austria and the United States. In most small-scale facilities, palliative care is important, with facilities prioritizing family involvement and person-centred care, minimizing resident discomfort and enhancing residents' remaining abilities until the end of life. The included studies did not discuss palliative care policies or professional staff training in depth. Conclusions: This study provides an overview of the literature on palliative care in small-scale facilities for individuals with dementia. Most facilities focus on residents' wishes at the end of life to enhance comfort and provide a home-like environment. However, more research is needed to further understand the quality of palliative care approaches in these homes. [ABSTRACT FROM AUTHOR]

Background: Advance care planning has been advocated as a way for people to have their wishes recorded and respected in relation to types of treatment and place of care. However, uptake in England remains low. Aims: To examine the views of older, well, adults towards Advance Care Plans (ACPs) and planning for end-of-life care, in order to inform national policy decisions. Methods: A mixed methods approach was adopted, involving individual and mini-group qualitative interviews (n = 76, ages 45–85), followed by a quantitative survey (n = 2294, age 55+). The quantitative sample was based on quotas in age, gender, region, socio-economic grade, and ethnicity, combined with light weighting to ensure the findings were representative of England. Results: Knowledge and understanding of advance care planning was low, with only 1% of survey respondents reporting they had completed an ACP for themselves. Common reasons for not putting wishes into writing were not wanting/needing to think about it now, the unpredictability of the future, trusting family/friends to make decisions, and financial resources limiting real choice. Conclusion: Whilst advance care planning is seen as a good idea in theory by older, well, adults living in the community, there is considerable reticence in practice. This raises questions over the current, national policy position in England, on the importance of written ACPs. We propose that policy should instead focus on encouraging ongoing conversations between individuals and all those (potentially) involved in their care, about what is important to them, and on ensuring there are adequate resources in community networks and health and social care systems, to be responsive to changing needs. [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]

Aim: To describe the development of a shared decision making intervention for planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services. Background: End‐of‐life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End‐of‐life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end‐of‐life conversations. Health professionals report needing more skills to raise the issue of end‐of‐life care options within consultations and patients want to be able to discuss issues important to them about future care plans. Methods: The development design was guided by the UK Medical Research Council's framework and a user‐centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved. Results: Areas considered significant to a shared decision making intervention were training of health professionals, conversations about end‐of‐life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations. Conclusion: An intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria. Implications for practice: DESIRE is intended to support shared decision making about planning end‐of‐life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care. Impact: What problem did the study address?: International guidelines recommend health professionals involve patients with kidney failure in making decisions about end‐of‐life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conversations about end‐of‐life care. What were the main findings?: The study resulted in the development of a complex intervention, called DESIRE, about shared decision making and planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services, including a training programme for health professionals, shared decision making conversations and a patient decision aid. Where and on whom will the research have an impact?: The research contributes a shared decision making intervention to patients in the later stage of kidney failure, their relatives and health professionals. We believe that the DESIRE intervention could be introduced during consultations with health professionals at an earlier stage of the patient's illness trajectory, as well as being applied to other chronic diseases. Reporting Method: This intervention development research is reported according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist and the DEVELOPTOOLS Reporting Checklist. Patient or Public Contribution: Patients, relatives and health professionals have been involved throughout the research process as part of the research team and advisory board. For this study, the advisory board has particularly contributed to the development process of the DESIRE intervention by actively participating in the four workshops, in the iterations between the workshops and in the preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Aims: To investigate the level of adoption of evidence‐based family engagement and support during end‐of‐life cancer care and subsequent bereavement and its contextual facilitators and barriers from health professionals' perspectives, and to explore differences between professional groups. Design: Contextual analysis using an online cross‐sectional survey. Methods: This study was conducted in four Swiss hospitals and three home care oncology and palliative care services. Non‐parametric testing was used to investigate the level of adoption and differences between nurses, physicians, occupational‐ and physiotherapists and psychosocial professionals (chaplains, onco‐psychologists and social workers). The STROBE checklist for cross‐sectional studies was followed. Results: The majority of the 111 participating health professionals were nurses. Adoption was statistically significantly higher during end‐of‐life care than bereavement, with nurses and physicians reporting higher levels than the other professional groups. Guidance on end‐of‐life family care was available in about half of the cases, in contrast to a quarter for bereavement care. Self‐perceived knowledge, skills and attitudes were moderate to high, with nurses and physicians reporting higher levels than others, except for general skills in working with families. Organisational structures were experienced as rather supportive, with the psychosocial group appraising the organisational context as significantly less conducive to fully implementing end‐of‐life and bereavement care than others, particularly during the end‐of‐life phase. Conclusion: Evidence‐based family engagement and support were better adopted during end‐of‐life care than bereavement. Overall, nurses and physicians felt better enabled to care for families compared to other professional groups. Patient or Public Contribution: No patient or public contribution. Protocol registration: https://osf.io/j4kfh. Implications for the profession and/or patient care: Implementation and quality improvement efforts should focus particularly on the bereavement phase and be tailored to professional groups. Impact: The findings show that evidence‐based family engagement and support practices during end‐of‐life were rather well adopted in contrast to subsequent bereavement care, with nurses and physicians better enabled than other professionals to provide care. A better understanding of health professionals' contributions and roles in family care is important to build interprofessional capacity for evidence‐based end‐of‐life and bereavement support. Reporting Method: The STROBE checklist for reports of cross‐sectional studies was followed (von Elm et al., 2007). [ABSTRACT FROM AUTHOR]

Background: The need for palliative care is ever-increasing globally. However, it is least developed or not available in most low-and-middle-income-countries including Bhutan. Objective: This study was aimed at exploring the perspectives of Bhutanese healthcare professionals on the need for palliative care in the country. Design: This is a cross-sectional, mixed-method study. Setting/subjects: The study sites included all levels of healthcare in Bhutan and involved doctors, nurses, physiotherapists, pharmacists, health assistants and Drungtshos (traditional physicians). Data were collected through surveys, focus group discussions and in-depth interviews. Results: While the majority of the participants were directly involved in taking care of terminally ill and dying patients, only 14% had received some form of palliative care training for a duration ranging from 1 day to 6 weeks. Ninety-five percent of the participants reported that they faced challenges related to lack of palliative care knowledge and skills; limited resources including analgesics; shortage of doctors and nurses and lack of a palliative care team; issues with low illiteracy and financial challenges among patients; and policies and other systemic issues. The qualitative data generated four major themes: past adverse experiences; unique and complex needs for palliative care; challenges faced while caring for terminally ill and dying patients; and the urgent need for palliative care in Bhutan. Conclusion: Bhutanese healthcare professionals had very limited exposure to palliative care. This study identified a crucial need for palliative care and informs the development of an appropriate palliative care model for Bhutan. Plain language summary: 'There is no such word as palliative care for us at the moment': A study exploring the perceptions of healthcare professionals on the need for palliative care in Bhutan Palliative care is least developed in most low-and-middle-income-countries. This study was aimed at exploring the perspectives of healthcare professionals on the need for palliative care in Bhutan. Utilising both quantitative and qualitative approaches, the study sites included all levels of healthcare in Bhutan and involved doctors, nurses, physiotherapists, pharmacists, health assistants and Drungtshos (traditional physicians). Data were collected through surveys, focus group discussions and in-depth interviews. While the majority of the participants were directly involved in taking care of terminally ill and dying patients, only 14% had received some form of palliative care training for a duration ranging from one day to six weeks. Ninety five percent of the participants reported that they faced challenges related to lack of palliative care knowledge and skills; limited resources including analgesics; shortage of doctors and nurses and lack of a palliative care team; issues with low illiteracy and financial challenges among patients; and policies and other systemic issues. The qualitative data generated four major themes: past adverse experiences; unique and complex needs for palliative care; challenges faced while caring for terminally ill and dying patients; and the urgent need for palliative care in Bhutan. Bhutanese healthcare professionals had very limited exposure to palliative care. This study identified a crucial need for palliative care and informs the development of an appropriate palliative care model for Bhutan. [ABSTRACT FROM AUTHOR]

Background: End-of-life care raises ethical, moral, legal and economic dilemmas, especially when physicians have to decide whether to initiate or to stop treatments that may be considered disproportionate and futile. Aim: To explore the opinion of health care professionals involved in end-of-life patient care on interventions considered disproportionate and futile at this stage of care, the causes and factors of pressure leading to such situations, and possible solutions to reduce the phenomenon. Material and method: The study used an adapted, designed questionnaire intended for health professionals caring for patients at the end of life. The 128 respondents were physicians, nurses, psychologists and social workers who expressed their opinions about therapeutic obstinacy in end-of-life care. Results: The results of the research highlight the role of the family as a pressure factor, the causes related to the non-acceptance of the prognosis and diagnosis of a terminal condition, fear of death and ignorance of the patient's wishes. Interventions considered disproportionate at the end of life were cardiopulmonary resuscitation, mechanical ventilation, transfusion of blood derivatives, complex diagnostic investigations and the establishment of gastrostomy/jejunostomy in the last days of life. Conclusions: End-of-life therapeutic obstinacy is a reality in end-of-life care, and healthcare professionals face many ethical challenges in this process. Care decisions must be made together with the patient and their family, respecting the rights, dignity and respect of all parties involved in the process. [ABSTRACT FROM AUTHOR]

Background: Spiritual care for patients at the end of life is an important element in their holistic care. The aim of this study is to assess the opinions of cancer patients with limited prognosis about the importance of faith in fighting illness and the factors contributing to a better adjustment to illness and to their self-reconciliation and spiritual well-being. Material and Methods: This study used a specially designed questionnaire for cancer patients with limited prognosis. The 30 respondents were patients with an estimated prognosis of less than 1 month, cared for in a unit with palliative and home care beds. Results: The patients emphasized the importance of family as a supporter in the fight against disease (90%), followed by faith (66.7%) and a care team (63.3%). The most common concerns expressed were related to the course of their disease, family distress, fear of death, and the Russian–Ukrainian war. Conclusion: Family and faith represent important factors in supporting and caring for a patient at the end-of-life. Patients who felt spiritually at peace and were supported in their faith by family and a priest had a better spiritual state. [ABSTRACT FROM AUTHOR]

(1) Background: Nursing homes (NHs) face unique challenges in end-of-life care for their residents. High rates of hospitalization at the end of life are frequent, often for preventable conditions. The increased clinical uncertainty during the pandemic, the high symptom burden of the COVID-19 disease, and the challenges in communication with families and between care teams might impact the option to hospitalize NH residents at the end of life. (2) Materials and methods: The study covered a 3-year period and compared the hospitalization rates of the NH residents of a sample of Portuguese NH during the last year of life before and during the pandemic. A total of 387 deceased residents were included in the study. (3) Results: There were fewer hospitalizations in the last year of life during the pandemic period, although the proportion of deaths at hospitals was the same. Hospitalizations occurred closer to death, and with more serious clinical states. The lower rate of hospitalization was due to lower hospitalization due to infection; (4) Conclusions: The data suggest an improvement in end-of-life care practices during the pandemic period, with the decrease in hospitalizations being due to potentially burdensome hospitalizations. The importance of the role of physicians, nurses, and caregivers in this setting may be relatively independent of each other, and each may be targeted in end-of-life care training. Further study is recommended to clarify the implications of the results and if the changes can be sustained in the long term. [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: Mental health is an issue of social and economic importance. Sociocultural and scholarly attention has largely focused on the negative aspects of mental health. That is, on mental disorders and illness and how they adversely impact our lives. In contrast, this paper forms part of a recent alternative empirical perspective in discourse-based research, by focusing on the positive aspects of mental health. In this article, we investigate how end-of-life care workers construct their positive psychological states. Methods: Our data are 38 audio-recorded and transcribed semi-structured interviews with end-of-life care workers from Hong Kong and the United Kingdom. We utilized thematic analysis to identify common categorial strands across the data and discourse analysis to identify the linguistic strategies that these interviewees used to talk about their mental health. Results: Our thematic analysis generated a superordinate theme across the interviews—namely, that of end-of-life care workers talking about their positive psychological states. We identify three generic ways that end-of-life care workers talked about these psychological states; by "foregrounding the positive," "reformulating the negative," and "dismissing the negative." Our analysis also explicates how interviewees connected social and organizational support to being a benefit to their psychological states. Conclusions: Our work contributes to existing discourse-based and sociolinguistic research on mental health by turning their focus towards a consideration of its positive dimensions. We also identify recurrent linguistics strategies used by people to construct their mental health. Our analyses point to the importance of investigating mental health as a multidimensional concept that considers participants' own reflections on their mental health. [ABSTRACT FROM AUTHOR]

Aims International studies have examined patients' views concerning the discussion of deactivating an implantable cardioverter defibrillator (ICD). Findings reported that many patients were either not informed about the subject or were informed late in their illness trajectory. This study aimed to explore healthcare professionals' perspectives on discussing ICD deactivation and identify priorities for clinical practice and future research. Methods and results Eleven interviews were conducted, involving heart failure nurses, physicians, and an allied professional. All were responsible for the care of patients with an ICD, from the UK or Sweden. A semi-structured guide was used. All interviews were audio-recorded, transcribed, translated (as applicable), and analysed independently by experienced researchers, using framework analysis. Findings were presented, along with published work at a stakeholder meeting, and a consensus agreement was reached on priorities for clinical practice and future research. Four themes emerged from the exploratory interviews. Healthcare professionals described the discussion about deactivation as challenging, requiring compassion and involvement of family members. They agreed that the topic should be initiated prior to, or shortly after, device implantation. This was reflected in the priorities to improve communication, through the increased availability and implementation of prompts and tools, as well as the provision of tailored information to patients and family members. Stakeholders recognized the future potential of digital technology in device education. Conclusion Discussing deactivation remains challenging. Healthcare professionals recognized the need to initiate the discussion early, with compassion and involvement of family members. Priorities were agreed by stakeholders, which require clinical implementation and further research. [ABSTRACT FROM AUTHOR]

Purpose: This study investigated the factors influencing attitudes toward end-of-life care among nurses at a tertiary hospital in Korea. Specifically, it examined the roles of nurses’ characteristics, death perceptions, terminal care stress, and life satisfaction. Methods: The participants included 150 nurses working at a tertiary hospital, who were recruited between August 15 and September 19, 2023. Data were collected through an online survey and analyzed using descriptive statistics, the t-test, analysis of variance, Pearson correlation coefficients, and multiple regression analysis with SPSS/WIN 28.0. Results: Nurses’ attitudes toward end-of-life care were positively correlated with death perceptions (β = .28, p < .001), 3 years or more of clinical experience (β = .25, p = .001), the experience of an acquaintance death (β = .22, p = .002) and life satisfaction (β = .20, p = .004). These variables explained 34.0% of the total variance in attitudes toward end-of-life care. Conclusion: It is essential to develop and implement individualized end-of-life nursing education programs, particularly utilizing simulations, for nurses with limited clinical experience and low levels of death perceptions. Further research should explore attitudes toward end-of-life care among various healthcare providers with a broader regional scope to improve the overall quality of end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nurses spend a significant amount of time at the child's bedside and have an acknowledged role in helping patients and families understand the information that they have been given by a doctor. Hence, the ethical role of the nurse in truth disclosure to children is worth exploring. Methods: A systematic academic database and grey literature search strategy was conducted using CINAHL, Medline Psych Info, and Google Scholar. Keywords used included truth, children, nurse, disclosure, serious illness, and communication. A total of 17 publications of varying types were included in the final data set. Ethical Considerations: As this was a review of the literature, there were no direct human participants. Empirical studies included in the review had received ethics approval. Results: Of the 17 articles included in the review, only one directly reported on the experiences of nurses asked to withhold the truth from patients. Empirical studies were limited to HIV-positive children and children diagnosed with cancer and the dying child. Conclusion: A paucity of literature exploring the experiences, attitudes, and beliefs of nurses with regard to truth-telling to seriously ill children is evident. Little consideration has been given to the role nurses play in communicating medical information to children in a hospital setting. The 17 articles included in the review focused on cancer, and HIV, diagnosis, and end-of-life care. Further research should be undertaken to explore the experiences and attitudes of nurses to clinical information sharing to children hospitalised with a wide range of serious illnesses and in diverse clinical scenarios. [ABSTRACT FROM AUTHOR]

Background: End-stage renal disease (ESRD) is the final stage of chronic kidney disease. Yet dialysis is not suitable for all ESRD patients. Moreover, while shared decision-making (SDM) is the preferred model for making medical decisions, little is known about SDM between nephrology nurses and ESRD patients in Israel. Research Objective: Assessing the views, attitudes, practices, and ethical dilemmas of nephrology nurses in Israel regarding SDM with ESRD patients. Methods: Using the descriptive quantitative approach, questionnaires were completed by 444 nephrology nurses in Israel. In addition to conducting descriptive statistics, t-tests for independent samples, f-tests for analysis of variance, and both tests for independence were also performed. Ethical Considerations: The research aims, expected advantages and risks have been explained to respondents before completing the questionnaire to secure informed consent. Anonymity and confidentiality were ensured throughout the study. The study was approved by the Research Ethics Committee at the University of Haifa (Approval # 411/21). Results: About one-third (30%–36.5%) of nurses reported discussing quality of life issues with ESRD patients, asking about their advance directives/power of attorney, exploring cultural/religious beliefs in end-of-life care, and ask about their preferred place of death. Nurses who convey high levels of patient-centered care (68.9%, p <0.0001), have high end-of-life training (76.2%, p <0.0001), and report cooperating with interdisciplinary teams (63.8%, p = 0.0415), also reported higher SDM practices than others. Nurses who refer less patients to palliative care (70%, p <0.0001) reported higher involvement in SDM compared to other nurses. Conclusions: Nephrology nurses in Israel do not tend to implement the SDM model, despite its potential for improving quality of life for ESRD patients and their families and increasing conservative care options. Policy makers and educators in Israel should develop and implement training programs and support in the workplace, to enhance SDM between nephrology nurses and ESRD patients. [ABSTRACT FROM AUTHOR]

Interest in voluntary assisted death (VAD) has been growing among researchers, policy makers and the public. This study aimed to explore older adults' perspectives on VAD in Australia. Using purposive sampling, 15 adults ≥65 years participated in in-depth semi-structured interviews. Interpretative phenomenological analysis identified four themes: cultural reflections; beliefs and worldviews; health aspects; and fabric of life. Participants expressed a desire to have control over end-of-life options, challenged by religious beliefs. Participants expressed concern that VAD legislation could leave people vulnerable to coercion and saw a need for safeguards. Reasons for and against supporting and utilising VAD were discussed. Physical illness was seen a more compelling reason for VAD than mental ill-health. Finally, connections to life and other were discussed, and being able to do the things one loved were named aspects of what it meant to live a good life. Implications are discussed along with future research directions. [ABSTRACT FROM AUTHOR]

While trying to protect themselves from COVID-19, intensive care nurses saved many patients by providing care during the pandemic. The aim of this study is to determine the anxiety levels of nurses working in intensive care units about COVID-19, attitudes toward and approaches to end-of-life care, and attitudes toward dying with dignity. This cross-sectional descriptive study was carried out with 144 nurses. The Attitudes and Behaviors of ICU Nurses Intended for End-of-Life Care Scale, Attitudes towards Principles about Dying with Dignity Scale and COVID-19 Anxiety Scale were used to collect data. The mean age of the nurses was 30.02 ± 6.02. 63.80% of them were women and 62.20% of them worked in the internal intensive care unit. While the participants supported the principles of dying with dignity, their attitudes and approach to end-of-life care were at a good level, and COVID-19 anxiety was at a low level. Participants mostly adopted the protection of human dignity and privacy principles. Attitudes and approaches to end-of-life care and attitudes toward dying with dignity were not affected by COVID-19 anxiety. [ABSTRACT FROM AUTHOR]

Western society is in an era of death awareness, its most recent salience: A Positive Death Movement. This article traces the evolution of American death culture by describing key periods of change, starting with the 1700s and going through the 21st century, and overviews contemporary movement scholarship. Experts suggest our current epoch is one in which a diffuse collection of individuals and organizations advocate for approaching death differently. Movement proponents aim to modify society's "conventional" death framework, which is characterized as medicalized, institutionalized, impersonal, and lacking psychosocial emotional preparation and engagement. [ABSTRACT FROM AUTHOR]