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Few studies have applied Benner's nursing theory in evaluating psychiatric nursing care for patients with schizophrenia and the complication of cancer. Further study and training are needed in the management of these diseases. (1) To elucidate and categorize psychiatric nursing expertise in schizophrenia and cancer according to the five stages of Benner's nursing theory. (2) To identify stage-specific learning needs for the psychiatric nursing care of schizophrenia and cancer, and to propose tailored educational programs. (3) To clarify the differences in the roles and training of psychiatric nurses in Malaysia and Japan. A qualitative descriptive design was adopted. Semi-structured interviews were conducted with a total of 20 psychiatric nurses in Malaysia and Japan. The data were thematically analyzed and categorized with Benner's theory. Benner's five stages of proficiency were: Novices followed pre-established routines; advanced beginners focused on psychiatric symptoms and behavior; competent nurses determined and prioritized methods of care; proficient nurses flexibly adjusted care to the patient's condition; and experts lent extensive experience to the team and patients. The following learning needs were identified: Novices struggled with identifying physical and psychiatric symptoms; advanced beginners had difficulties understanding ambiguous patient statements; competent nurses needed to improve emergency response skills; proficient nurses faced ethical challenges; and experts sought to pass on their knowledge. Stage-appropriate educational programs, such as a Visual Pain and Psychiatric Symptoms Evaluation Sheet, were proposed accordingly. Further investigations should assess the effectiveness of these educational programs, Japanese–Malaysian cultural differences, and psychiatric liaison nursing. • Benner's theory clarified nurses stages of expertise relative to co-occurring diagnosis of schizophrenia and cancer. • Psychiatric nurses need stage-appropriate training on schizophrenia and cancer. • Novices, Advanced beginners lacked assessment skills of pain, psychiatric symptoms. • Competent to expert nurses faced emergencies, ethical dilemmas, end-of-life care. • A comprehensive evaluation sheet for schizophrenia and cancer symptoms is proposed. [ABSTRACT FROM AUTHOR]

Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language. We conducted a cross-sectional study of patients who died at Texas Children's Hospital from 2018 to 2019. Demographics, date of death, and final code status were extracted. Medical complexity prior to admission and mode of death were obtained from chart review. We included 433 patients. Over one-third were Hispanic (39.3%) with 42.3% preferring Spanish. The majority were White (61.4%) or Black (21.0%). Most patients had significant medical complexity (52.0%) or were infants in their birth admission (29.4%). Half (52.4%) received palliative care; patients with increased medical complexity were more likely to have palliative care involved (P <0.001). There were no differences in palliative care, code status, or mode of death by race. Hispanic patients were less likely to have a full code status (OR 0.42, 95% CI: 0.25–0.73). Spanish-speaking patients were more likely to have palliative care involvement (OR 2.05, 95% CI: 1.21–3.46) and less likely full code orders (OR 0.24, 95% CI: 0.1–0.63). Palliative care services are engaged with most children at end of life and is accessible to marginalized patient groups. Spanish-speaking patients have different code status orders and modes of death at end of life. Further studies are needed to elucidate explanatory factors for differences revealed and multicenter studies are needed to characterize more widespread experiences. [ABSTRACT FROM AUTHOR]

With the aging population, there is an increased need for nurses with competence in chronic illness and palliative care management particularly in long-term care settings. The incorporation of palliative care education in nursing curricula has been explored previously. This review aimed to appraise the current literature on the state of palliative care education in academia and how it impacts the preparedness of nurses to enter long-term care post-graduation. There has not been an integrative review exploring curriculum-based palliative care education for long-term care. This review was guided by the method of Whittemore and Knafl using critical appraisal tools. The CINAHL, Cochrane, EBSCO, ERIC, Journals@Ovid, Medline, PsycINFO, and ScienceDirect databases were searched for peer-reviewed literature from 2017 to 2022. Sixteen items met the search criteria for appraisal, and 11 items were retained for discussion. There is a gap in nursing curricula in preparing nurses for the situations faced by long-term care nurses. Long-term care nurses develop strong bonds with residents and families and often lack time, space, and resources to cultivate the confidence and competence as palliative situations arise. More research is needed to determine the best placement in nursing programs for palliative-based long-term care education. • More nurses with competence and confidence in palliative care delivery are needed. • Nurses who enter long-term care practice do not feel prepared to deliver palliative care. • Stronger palliative education initiatives are needed in nursing programs. [ABSTRACT FROM AUTHOR]

End of life care in the emergency department is environmentally and culturally challenging. The aim of this study was to determine Australian emergency department doctors and nurses' perceptions of their roles in providing end of life care in this environment. Perceptions of end-of-life care roles were identified through semi-structured interviews with doctors and nurses using Dieklemann's seven interpretative stages of analysis guided by phenomenological interpretive underpinnings (hermeneutics). Nine nurses and seven doctors were recruited using purposive sampling. Organisations for emergency doctors (Australasian College for Emergency Medicine: ACEM) and emergency nurses (College of Emergency Nursing Australasia: CENA) were approached to advertise the study and recruit participants across Australia via email. Results were categorised into four themes namely: role perception; the intensive nature of the role; emotional burden; and role integration. The participants stated that end of life care was provided according to their professional roles and responsibilities. Doctors and nurses had distinct tasks, some of which overlapped. The accounts of the participants in relation to their understanding of each other's roles highlighted differences in how nurses perceived the role of doctors, and vice versa. The participants spoke about aspects that had an impact on their role of practicing end of life care in the emergency department setting. In this study, all participants expressed concern for dying patients in the emergency department. The delivery of quality end of life care was believed to be paramount and required staff to work together to achieve the best outcome for the dying patient and their families. Regardless of the similarities and differences that were perceived within their roles, the nurses and doctors believed that their main objective was to ensure that comfort care was provided to dying patients. [ABSTRACT FROM AUTHOR]

With the geriatric population in the United States growing rapidly, the prevalence of dementia is expected to rise concomitantly. As dementia is an invariably progressive and terminal illness, planning for and managing end of life care in dementia is an important part of the overall process of dementia care. Unfortunately, this is often neglected outside of formal palliative and hospice medicine training programs and geriatric psychiatrists are left without preparation on how to manage, as well as counsel patients and families on, this important phase of dementia care. This review aims to explore the potential contributors to this historic disparity in geriatric education and care delivery, as well as its impact, while also attempting to shift the field's focus toward a palliative approach to dementia care. To begin to accomplish this, this review explores the natural illness history/disease trajectory of the various dementing illnesses, as well as the topic of prognostication as it pertains to the end of life for patients with dementia and how this information can be used in advanced care planning and symptom management. [ABSTRACT FROM AUTHOR]

End-stage liver disease (ESLD) is the culmination of progression of chronic liver disease to cirrhosis, decompensation, and chronic liver failure, featuring portal hypertension or hepatocellular failure-related complications. Liver transplantation offers improved long-term survival for these patients but is negatively influenced by donor availability, financial constraints in developing countries, active substance abuse, progression of disease or malignancy on wait-list, sepsis and extrahepatic organ involvement. In this context, palliative care (PC), an interdisciplinary medical practice that aim to prevent and relieve suffering, offers best possible quality of life and is not limited to end-of-life care. It also encompasses achievable goals such as symptom control and aggressive disease-modifying treatments or interventions that beneficially alter the natural course of the disease to offer curative intend. In this narrative review, we discuss the prognostic factors that define disease course in ESLD, various indications and challenges in PC for advanced cirrhosis and management options for major symptom burden in patients with ESLD based on evidence-based best practice. [ABSTRACT FROM AUTHOR]

• Families support antibiotic stewardship but feel responsible for RACF resident's best interests. • If infection is suspected, regular communication and evidence of high-quality care reassures relatives. • Antibiotics are not viewed as a life-sustaining treatment for resistant and refractory infections. • Advanced care planning involving families should be promoted with antibiotic use a specific focus. Antimicrobial resistance makes the misuse of antibiotics in residential aged care facilities (RACFs) a significant concern. Family members influence antibiotic prescribing for RACF residents, but there is limited understanding of the beliefs and knowledge that drive their involvement. Drawing on a fictional scenario, forty-six participants with a parent aged 75 or over took part in eight dialogue groups exploring family members' perspectives on antibiotic use and risks in older relatives. Main themes were identified using framework analysis. Participants supported judicious use of antibiotics in RACFs, but perceived vulnerabilities of older people, both structural and physiological prompt family pressure for antibiotics. Empirical antibiotic use became more acceptable when pathways to a prompt diagnosis are not apparent or confidence in RACF monitoring and care is lacking. The role of antibiotics in end-of-life decision-making was significantly under-recognised. Overall, elevation of discussion around antibiotics and end of life care are required. [ABSTRACT FROM AUTHOR]

This paper addresses nutritional challenges in advanced cancer and at the end of life and implications for oncology nursing practice. Recent literature and position statements regarding nutritional support in advanced disease and at the end of life were reviewed and case studies were developed to illustrate the nutritional issues facing patients and family members. The literature and case examples illustrate the many issues confronting patients, families, and clinicians related to nutritional support including balancing the goals of comfort versus prolonged survival. Patients and families often face difficult decisions regarding the use of medically assisted nutrition and hydration while considering potential burdens and harms. Principles of ethics can be applied in the process of making these decisions. Providing nutrition is one of the most important aspects of care provided by families for patients with advanced disease with deep meaning in these relationships, especially at the end of life. Oncology nurses provide valuable guidance in these decisions and offer support to both patients and families to ensure quality of life across the trajectory of cancer. Nurses can apply skills in patient and family caregiver education, communication, and support to help navigate nutritional decisions. [ABSTRACT FROM AUTHOR]

• Doctors faced moral distress from decision-making responsibilities, while nurses felt it from enacting care against moral beliefs. • End of life treatment decisions can pose dilemmas for emergency clinicians, but ethical principles offer guidance. • Participants suggested collaborative decision making with nurses in treatment plans to improve ethical dilemma experiences. The integration of end of life care into emergency work is gaining momentum, especially in Australia. Emergency doctors and nurses are increasingly required to make decisions regarding the provision of end of life care. The importance of end of life care for patients and their families in the emergency department is well documented, but ethical dilemmas that arise in end of life care provision are not widely researched. A qualitative interpretative design and phenomenological approach were used to create an understanding and meaning about ethical dilemmas faced by emergency nurses and doctors in end of life care. Sixteen doctors and nurses were purposively recruited through professional organisations. Data were collected using semi-structured in-depth interviews. Interviews were audio-taped, transcribed verbatim, and thematically analysed using a qualitative seven stage thematic analysis. The overarching constitutive pattern 'decision making processes' was conceptualised within the two identified major themes including: 1) Short-term (ST) versus Long-term (LT) ethical dilemmas and; 2) Individual versus community ethical dilemmas. These themes were uncovered using the phenomenological hermeneutic concepts of epoche (openness) to construct meaning and understanding for participants. In this study, the frequent experiences of ethical dilemmas by emergency doctors and nurses demonstrated that end of life care in the emergency department was challenging. The stated experiences were related to barriers that contributed to the complexities reported in making ethical decisions at the end of life. Therefore, an understanding of ethical principles is needed to navigate care for patients and their families for the best possible outcomes. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced illnesses are often admitted with acute surgical emergencies. There is currently no evidence characterising such admissions. We aimed to evaluate emergency patients, managed non-operatively, who died during the same admission.Methods: This single-centre retrospective, observational study collected data points for a 12 month period including age, prior documented do not resuscitate order (DNAR), existing cancer, Charlson Comorbidity Index, frailty, surgical diagnosis, interval from admission to death and care given. Patients who underwent surgical intervention were excluded. Non-parametric tests were used for statistical analysis.Results: A total of 72 patients were included in this study, of which 68.1% died within 6 days of admission (median 4.0 days). Patients with visceral perforation, obstruction, bowel ischaemia or known malignancy were more likely to die within 6 days than those with pancreatitis, sepsis or new malignancy (median 2 vs 7 days, p < 0.001). Patients with frailty (2 vs 4 days, p = 0.017) and existing DNAR (3 vs 4 days, p = 0.048) died more rapidly than those without. Age and comorbidity index did not impact time to death.Conclusion: Frailty, surgical diagnosis and existing DNAR were predictors of shorter admission to death interval, while age and comorbidity index were not. This has implications on inpatient palliative care service planning. [ABSTRACT FROM AUTHOR]

objective: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is tailored to the parents' needs, thus highly varying. To better understand the nature of preloss care, this study aims to gain insight into the challenges HCPs encounter while providing care for parents during their child's end-of-life. Methods: Exploratory qualitative research using semistruc-tured interviews with physicians and nurses working in neonatology and pediatrics in 3 university pediatric hospitals and 1 child home care service. A multidisciplinary team thematically analyzed the data. Results: Twenty-two HCPs participated in this study. From the HCPs' inner perspective, three dyadic dimensions in preloss care delivery were identified that create tension in HCPs: sustaining hope versus realistic prospects, obtaining emotional closeness versus emotional distance, and exploring emotions versus containing emotions. Throughout preloss care delivery, HCPs weighed which strategies to use based on their perception of parental needs, the situation, and their own competencies. HCPs remained with lingering uncertainties on whether the preloss care they provide constituted optimal care. Conclusions: As a result of the experienced tension, HCPs are at risk for prolonged distress and possibly even compassion fatigue. In order to maintain a positive emotional balance in HCPs, education should focus on adapting positive coping strategies and provide hands-on training. Furthermore, on an institutional level a safe environment should be fostered and well-being could be enhanced through learning by sharing as a team. [ABSTRACT FROM AUTHOR]

Objective: End-of-life care is often overlooked in the dialysis unit despite high mortality rates. This study aimed to understand the diverse subjectivity of opinions on end-of-life care preferences, feelings, needs, value and goals in life among a haemodialysis population.Methods: The Q methodology was used where 37 opinion statements were ranked in order of importance in a unimodal shaped grid. Results were explored using the Centroids factor extraction and Varimax rotation.Results: Four-three persons living with haemodialysis, mean age± SD= 56.58 ± 10.22 years, participated in the study. Five-factors were identified: living in the present, family preference, self preservation, power vs. control and autonomy in decision making, loaded by eleven, four, four, three and three participants with 16 individuals not loading significantly and two were confounded. Preferences for remaining positive in the face of illness through a healthy lifestyle and preserving relationships and autonomy were demonstrated.Conclusions: End-of-life discussions are potentially inhibited by preferences to live for the present which should be explored in future studies.Practice Implication: Statement sets may be used to help facilitate end-of-life discussions through identification of opinion groups. Establishing preferences may guide identification of those willing to initiate discussions. [ABSTRACT FROM AUTHOR]

Context: Patients can prepare for end of life and their forthcoming death to enhance the quality of dying.Objectives: We aimed to longitudinally evaluate the never-before-examined associations of cancer patients' death-preparedness states by conjoint cognitive prognostic awareness and emotional preparedness for death with psychological distress, quality of life (QOL), and end-of-life care received.Methods: In this cohort study, we simultaneously evaluated associations of four previously identified death-preparedness states (no-death-preparedness, cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) with anxiety symptoms, depressive symptoms, and QOL over 383 cancer patients' last six months and end-of-life care received in the last month using multivariate hierarchical linear modeling and logistic regression modeling, respectively. Minimal clinically important differences (MCIDs) have been established for anxiety- (1.3-1.8) and depressive- (1.5-1.7) symptom subscales (0-21 Likert scales).Results: Patients in the no-death-preparedness and cognitive-death-preparedness-only states reported increases in anxiety symptoms and depressive symptoms that exceed the MCIDs, and a decline in QOL from those in the sufficient-death-preparedness state. Patients in the emotional-death-preparedness-only state were more (OR [95% CI]=2.38 [1.14, 4.97]) and less (OR [95% CI]=0.38 [0.15, 0.94]) likely to receive chemotherapy/immunotherapy and hospice care, respectively, than those in the sufficient-death-preparedness state. Death-preparedness states were not associated with life-sustaining treatments received in the last month.Conclusion: Conjoint cognitive and emotional preparedness for death is associated with cancer patients' lower psychological distress, better QOL, reduced anti-cancer therapy, and increased hospice-care utilization. Facilitating accurate prognostic awareness and emotional preparedness for death is justified when consistent with patient circumstances and preferences. [ABSTRACT FROM AUTHOR]

Context: The goals of care discussion (GOCD) has been positioned as an improvement strategy to address discordance between care decisions made by seriously ill patients and care received. Interventions aimed at improving GOCDs however have had limited success. This may in part be due to the considerable variation in views on the essential components and expected outcomes of a GOCD. This variability, and consequently clinical approaches to GOCDs, may reflect fundamental differences in how the GOCD is conceptualized.Objective: To identify and characterize differing conceptualizations of the GOCD.Methods: Critical discourse analysis was used to qualitatively examine GOCDs documented for inpatients of 35 Canadian palliative medicine (PM), critical care medicine (CCM) and general internal medicine (GIM) physicians. Patterns in the ways the GOCD had been constructed were characterized by identifying different aspects of the approaches used by clinicians.Results: GOCD notes varied in the predominant style and tone (from narrative to biomedical), predominant information source (patient/family to physician), and contribution of the patient's perspective. Notably binary differences were also found in the locus of goals and located either with the patient or with the broad concept of treatments. Although not exclusively, locus of goals tended to be with the patient among PM physicians and with treatments among CCM and GIM physicians.Conclusion: These findings offer clinical evidence for differing conceptualizations of the GOCD and orientations to goals as either person-centered or treatment-centered. This phenomenon may be in part discipline-based and has important implications for both clinical practice and training experiences. [ABSTRACT FROM AUTHOR]

End-of-life-care (EOLC) simulation is a new concept preparing student nurses for clinical practice. The aim of this study was to explore the experiences of undergraduate children's nursing students participating in simulation of the imminent death of a child. A sample of 39 third-year children's nursing students participated in an open-ended questionnaire and five students participated in a focus group. Data was analysed using thematic analysis. Four themes were identified. (a) 'Learning how to communicate in an end-of-life situation' including challenges faced by participants in communicating with parents. (b) 'Emotional impact of end-of-life simulation' demonstrating significant emotional impacts on participants. (c) 'Value of simulation for teaching end-of-life care' with all participants reporting the simulation training as useful and providing a positive experience for learning despite the emotive nature. (d) 'Preparation for practice' reporting that simulation has prepared students to deliver EOLC in practice. The findings support the use of simulation as a method of teaching EOLC. There is a need to ensure the emotional safety of student nurses engaging in EOLC simulation. • Communicating with parents during end of life care for children generates anxiety for student nurses. • Simulation provides safe space to explore communication with family during end of life care. • The use of high-fidelity simulation offers an opportunity to witness some of the deteriorating symptoms in the child at end-of-life. [ABSTRACT FROM AUTHOR]

Context: Hospitalization provides an opportunity to address end-of-life care (EoLC) preferences if patients at risk of death can be accurately identified while in the hospital. The modified Hospital One-Year Mortality Risk (mHOMR) uses demographic and admission data in a logistic regression algorithm to identify patients at risk of death one year from admission.Objectives: This project sought to validate mHOMR and identify superior models.Methods: The mHOMR model was validated using historical data from an academic health system. Alternative logistic regression and random forest (RF) models were developed using the same variables. Receiver operating characteristic (ROC) and precision recall curves were developed, and sensitivity, specificity, and positive and negative predictive values were compared over a range of model thresholds.Results: The RF model demonstrated higher area under the ROC curve (0.950, 95% CI 0.947 - 0.954) as compared to the logistic regression models (0.818 [95% CI 0.812 - 0.825] and 0.841 [95% CI 0.836 - 0.847]). Area under the precision recall curve was higher with the random forest model compared to the logistic regression models (0.863 vs. 0.458 and 0.494, respectively). Across a range of thresholds, the RF model demonstrated superior sensitivity, equivalent specificity, and higher positive and negative predictive values.Conclusion: A machine learning RF model, using common demographic and utilization data available on hospital admission, identified inpatients at risk of death more effectively than logistic regression models using the same variables. Machine learning models have promise for identifying admitted patients with elevated one-year mortality risk, increasing opportunities to prompt discussion of EoLC preferences. [ABSTRACT FROM AUTHOR]

Context: There are few international studies about the continuous use of sedatives (CUS) in the last days of life.Objectives: We aim to describe the experiences and opinions regarding CUS of physicians caring for terminally ill patients in seven countries.Methods: Questionnaire study about practices and experiences with CUS in the last days of life among physicians caring for terminally ill patients in Belgium (n = 175), Germany (n = 546), Italy (n = 214), Japan (n = 513), the Netherlands (n = 829), United Kingdom (n = 114) and Singapore (n = 21).Results: The overall response rate was 22%. Of the respondents, 88-99% reported that they had clinical experience of CUS in the last 12 months. More than 90% of respondents indicated that they mostly used midazolam for sedation. The use of sedatives to relieve suffering in the last days of life was considered acceptable in cases of physical suffering (87%-99%). This percentage was lower but still substantial in cases of psycho-existential suffering in the absence of physical symptoms (45%-88%). These percentages were lower when the prognosis was at least several weeks (22%-66% for physical suffering and 5%-42% for psycho-existential suffering). Of the respondents, 10% or less agreed with the statement that CUS is unnecessary because suffering can be alleviated with other measures. A substantial proportion (41%-95%) agreed with the statement that a competent patient with severe suffering has the right to demand the use of sedatives in the last days of life.Conclusion: Many respondents in our study considered CUS acceptable for the relief of physical and psycho-existential suffering in the last days of life. The acceptability was lower regarding CUS for psycho-existential suffering and regarding CUS for patients with a longer life expectancy. [ABSTRACT FROM AUTHOR]

• Simulation course may educate healthcare professionals human factors skills. • Simulation course improved knowledge and confidence on dementia care • Simulation course improved knowledge and confidence on palliative care Dementia care is a serious public health concern. Many healthcare professionals lack education in providing quality end of life (EOL) care and advance care planning (ACP) for those affected. Simulation-based education (SBE) is suggested as an educational tool to practice human factor skills through simulated clinical settings. 21 healthcare professionals volunteered from an EOL pilot simulation education course. : A one-day simulation course with The Human Factors Skills for Healthcare Instrument and a course-specific questionnaire completed at pre- and post-course for evaluation. Participants' human factor skills, confidence, and knowledge on EOL care and ACP significantly improved after the SBE course, p <.001. This study suggests SBE as a viable tool to improve healthcare professionals' human factor skills and confidence in and knowledge of EOL care and ACP for dementia care. Further research should aim to investigate SBE's direct impact on clinical practice. [ABSTRACT FROM AUTHOR]

Background: Although mortality rates associated with burns have decreased, there is still a significant number of persons who may not survive severe forms of the injury and thus, undergo comfort/end of life care. The experiences of family members of persons whose injuries are deemed unsurvivable remain minimally explored and there is a general lack of practice guidelines and recommendations to support them at the end-of-life period.Aim: To explore the experiences of family members whose relatives died in the burn unit to inform the development of practice recommendations.Methods: Qualitative description was employed for this study. Convenience sampling was used to recruit 23 family members of injured persons who died in the burn unit. Face to face semi-structured interviews were conducted and followed up with telephone interviews. The interviews were audio-recorded, transcribed verbatim and thematic analysis performed inductively.Results: Three themes emerged: reactions following injury occurrence, navigating through the experience, and managing uncertainties about survival. The sudden nature of the injury led to feelings of self-blame, guilt, helplessness, and grief and these escalated at the end of life. As the family members journeyed through their uncertainties regarding the outcomes of care, they had a feeling of being a part of the patient's suffering. Family members received little professional support in coming to terms with their loss in the post-bereavement period.Conclusions: Family members experience distress following the occurrence of burns and at the endof-life period. Practice recommendations should focus on communication, bereavement, and post-bereavement support. [ABSTRACT FROM AUTHOR]

• Pediatric critical care nurses feel underprepared to provide End of Life (EOL) care. • Although EOL care is often incorporated into undergraduate nursing education, there is a gap in education for critical care bedside nurses on caring for patients during this difficult time. • An in Situ simulation based educational initiative can improve nursing comfort and confidence in providing EOL care. • Nearly 100% of nurses surveyed felt the EOL simulations would help current and future nurses in this pediatric Cardiac Intensive Care Unit provide EOL care. Although undesired, death is a real potential outcome in any critical care unit, and end of life (EOL) care is a necessary nursing skill. While this can be an overwhelming experience for all medical providers, bedside nurses most frequently perform these difficult, but necessary tasks. Preparing newly hired nurses for this experience is challenging. This pediatric cardiac intensive care unit found that many nurses struggled with the emotional reactions, EOL tasks, and family support during their first EOL experience. An EOL simulation curriculum was developed and implemented, and a survey was administered to better understand the EOL educational needs of the newly hired nurses. After completing the simulation experience, the participants noted subjective increased comfort during EOL experience, and their peers noted a perceived increase in competence. [ABSTRACT FROM AUTHOR]

Background: It is important to document the domains surrounding end-of-life (EOL) care in the electronic health record (EHR). No pediatric navigator exists for these purposes.Measures: Medical charts were reviewed for documentation surrounding code status and care at the time of death from January 2017 to June 2019.Intervention: Creation of a navigator in the EHR to consolidate advance care planning documents, code status orders and notes and EOL flowsheets.Outcomes: After implementing the navigator, 96% code status changes had supporting documentation, an increase of 35%. The percentage of deaths supported by a psychosocial team (social worker, chaplain and certified child life specialist) increased by 25%. Post-mortem documentation became electronic. Patient level metrics began to be electronically collected.Conclusions/lessons Learned: Little has been published regarding use of the EHR to consolidate EOL documentation in pediatrics. Development of a systematic approach to documentation is critical to providing EOL care and standardizing care delivered. [ABSTRACT FROM AUTHOR]

Context: Systematic data on the care of people dying with COVID-19 are scarce.Objectives: To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors.Methods: We surveyed palliative care and hospice services, contacted via relevant organizations. Multivariable logistic regression identified associations with challenges. Content analysis explored free text responses.Results: A total of 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world; 81% cared for patients with suspected or confirmed COVID-19, 77% had staff with suspected or confirmed COVID-19; 48% reported shortages of Personal Protective Equipment (PPE), 40% staff shortages, 24% medicines shortages, 14% shortages of other equipment. Services provided direct care and education in symptom management and communication; 91% changed how they worked. Care often shifted to increased community and hospital care, with fewer admissions to inpatient palliative care units. Factors associated with increased odds of PPE shortages were: charity rather than public management (OR 3.07, 95% CI 1.81-5.20), inpatient palliative care unit rather than other settings (OR 2.34, 95% CI 1.46-3.75). Being outside the UK was associated with lower odds of staff shortages (OR 0.44, 95% CI 0.26-0.76). Staff described increased workload, concerns for their colleagues who were ill, whilst expending time struggling to get essential equipment and medicines, perceiving they were not a front-line service.Conclusion: Palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics. [ABSTRACT FROM AUTHOR]

Context: To identify caregivers' death-preparedness states by combining cognitive and emotional preparedness for their loved one's death as well as their evolution over cancer patients' last 6 months, which have never been explored.Methods: Death-preparedness states and their evolution were examined by hidden Markov modeling among 393 caregivers of cancer patients.Results: Four death-preparedness states were identified: no death preparedness, cognitive death preparedness only, emotional death preparedness only, and sufficient death preparedness. Caregivers in the no-death-preparedness state had neither accurate cognitive prognostic awareness (PA) nor adequate emotional preparedness for death. Caregivers in the sufficient-death-preparedness state reported accurate PA and adequate emotional preparedness for death. In the cognitive- and emotional-death-preparedness-only states, caregivers were accurately aware of the patient's prognosis and adequately emotionally prepared for his/her forthcoming death only, respectively. Prevalence of the sufficient-death-preparedness state fluctuated within a narrow range (40.8%-43.2%) over the patient's last six months. Proportions of caregivers decreased in the emotional-death-preparedness-only (19.5%-6.5%) and no-death-preparedness (21.0%-8.2%) states, whereas prevalence of the cognitive-death-preparedness-only state increased substantially (16.3%-44.4%) to become the most prevalent state as death approached.Conclusion: Caregivers of cancer patients heterogeneously experienced combined cognitive and emotional preparedness for death. About 40% of caregivers consistently had sufficient death preparedness over their loved one's dying process. Evaluating these different aspects of death preparedness could be an important approach in high-quality end-of-life care by not only cultivating caregivers' cognitive PA, but also facilitating their emotional preparedness for the patient's death, thus helping caregivers prepare well for their loved one's forthcoming death. [ABSTRACT FROM AUTHOR]

Hospitals can be challenging environments for nurses when providing palliative and end-of-life care. Understanding hospital nurses' experiences of their application of palliative and end-of-life knowledge could help direct future education to support such challenging care. To understand how hospital nurses use knowledge in palliative and end-of-life care situations. Interpretive phenomenology was used to understand 10 hospital nurses' experiences and ability to apply palliative and end-of-life knowledge. The hospital nurses' experiences of knowledge in palliative and end-of-life care was like Crossing Antarctica: unpredictable due to the changing demands and life course leading to uncertainty with knowledge and feeling helpless. Two themes emerged; Knowledge and uncertainty describes feeling unprepared, lacking in knowledge; knowledge and empowerment describes the nurses experiences of applying their knowledge in clinical environments. The nurses' sense of uncertainly could be attributed to their palliative and end-of-life knowledge being systematic, making it difficult for them to manage uncertain situations. Some nurses were empowered to apply knowledge, others were disempowered, suggesting the ability to apply their palliative and end-of-life knowledge is not determined by knowledge alone but also by the position they held. • Palliative and end-of-life care is like crossing Antarctica; unpredictable. • Nurses' uncertainty could be attributed to systematic and technical rational knowledge. • Nurses' power to apply their knowledge is determined by knowledge and by their position. • Visual metaphors were used to explore experiences that other methods may not achieve. [ABSTRACT FROM AUTHOR]

• Alternative models are required to meet the palliative care needs of our ageing population. • EMPallA is a trial comparing nurse-led telephonic care to outpatient palliative care. • Early data indicate that seriously ill patients are willing to engage within the program. • Within the program, nurses have had success in achieving goal-concordant care. • This innovative program is an important model for bringing palliative care directly to patients. The COVID-19 pandemic has resulted in a profound transformation of health care delivery toward telemedicine models. We present the structure of a nurse-led telephonic palliative program and operational metrics to influence further development of tele-palliative programs. The nurses engage with seriously ill patients for 6 months with the goal of discussing advance care planning (ACP) and addressing self-identified issues related to their illness. Of the first 100 program graduates, 78% were actively engaged and 51% named a health care agent and/or engaged in ACP. Of the 18 patients who died during the study, 13 (72%) were enrolled in hospice services. Our preliminary results indicate that seriously ill patients are willing to engage with nurses and to participate with discussions on ACP. Given the gaps in health care exposed by the COVID-19 pandemic, this innovative program serves as an important model for bringing palliative care directly to patients. [ABSTRACT FROM AUTHOR]

Context: Fatigue is the most commonly reported symptom in life-limiting illnesses, although not much is known about the distress it causes patients as they approach death.Objectives: To map the trajectory of distress from fatigue reported by an Australian palliative care population in the last 60 days leading up to death.Methods: A prospective, longitudinal, consecutive cohort study using national data from the Australian Palliative Care Outcomes Collaboration between July 1, 2013, and December 31, 2018. Patients were included if they had at least one measurement of fatigue on a 0-10 numerical rating scale in the 60 days before death. Descriptive statistics were used to analyse patients by diagnostic cohort and functional status.Results: A total of 116,604 patients from 203 specialist palliative care services were analyzed, providing 501,104 data points. Distress from fatigue affected up to 80% of patients referred to palliative care, with the majority experiencing moderate or severe distress. Malignant and nonmalignant diagnoses were equally affected, with the neurological cohort showing the greatest variability. The degree of distress correlated with a patient's functional level; it worsened as a patient's function declined until a patient became bedbound when the reporting of distress reduced.Conclusions: Distress from fatigue is high in this cohort of patients. Interventions to reduce this distress need to be a research priority. [ABSTRACT FROM AUTHOR]

Context: The pandemic has substantially increased the workload of hospital palliative care providers, requiring them to be responsive and innovative despite limited information on the specific end of life care needs of patients with COVID-19. Multi-site data detailing clinical characteristics of patient deaths from large populations, managed by specialist and generalist palliative care providers are lacking.Objectives: To conduct a large multicenter study examining characteristics of COVID-19 hospital deaths and implications for care.Methods: A multi-center retrospective evaluation examined 434 COVID-19 deaths in 5 hospital trusts over the period March 23, 2020 to May 10, 2020.Results: Eighty three percent of patients were over 70%-32% were admitted from care homes. Diagnostic timing indicated over 90% of those who died contracted the virus in the community. Dying was recognized in over 90% of patients, with the possibility of dying being identified less than 48 hours from admission for a third. In over a quarter, death occurred less than 24 hours later. Patients who were recognized to be dying more than 72 hours prior to death are most likely to have access to medication for symptom control.Conclusion: This large multicenter study comprehensively describes COVID-19 deaths throughout the hospital setting. Clinicians are alert to and diagnose dying appropriately in most patients. Outcomes could be improved by advance care planning to establish preferences, including whether hospital admission is desirable, and alongside this, support the prompt use of anticipatory subcutaneous medications and syringe drivers if needed. Finally, rapid discharges and direct hospice admissions could better utilize hospice beds and improve care. [ABSTRACT FROM AUTHOR]

Women with a gynaecological malignancy often suffer significant symptom burden, both physically and psychologically, throughout the course of their disease. Despite advances in treatment, up to 25% of women diagnosed with a gynaecological malignancy will die from recurrent disease. Early palliative care involvement provides a holistic approach to care with the benefit of improving symptom control and quality of life for the patient and their carers, as well as lowering resource utilisation at the end of life. Palliative care can be offered alongside curative or life prolonging treatment as well as at end of life. This article reviews the management of common physical symptoms and complications experienced by patients with advanced gynaecological malignancy. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) and completion advance care directives (ACDs) is recommended for patients with cancer. Documentation needs to be available at the point of care. To describe the prevalence of ACDs in health records and the self-reported awareness of and engagement in ACP as reported by older Australians with cancer, and to examine the concordance between self-reported completion of and presence of documentation in participants' health records. Prospective multi-center audit of health records, and a self-report survey of eligible participants in 51 Australian health and residential aged care services. The audit included 458 people aged ≥65 years with cancer. 30% had ≥ ACD located in their record. 218 people were eligible for survey completion; 97 (44% response rate) completed it. Of these, 81% had a preference to limit some/all treatments, 10% wanted to defer decision-making to someone else, and 9% wanted all treatments. Fifty-eight percent of survey completers reported having completed an ACP document. Concordance between documentation in the participant's record and self-report of completion was 61% (k = 0.269), which is only fair agreement. Whilst 30% of participants had at least one ACD in their record, 58% self-reported document completion, and concordance between self-reported completion and presence in records was only fair. This is significant given most people had a preference for some/all limitation of treatment. Further ACP implementation strategies are required. These include a systematic approach to embedding ACP into routine care, workforce education, increasing community awareness, and looking at e-health solutions to improve accessibility at the point of care. [ABSTRACT FROM AUTHOR]

Patients receiving left ventricular assisted device (LVAD) require the expertise of specialty trained nurses referred to as VAD coordinators. The long-term use of these devices has created morally distressing situations for VAD coordinators. This pilot study sought to explore the association between ventricular assistance device (VAD) coordinators' unique roles and responsibilities and moral distress. An online survey was distributed to VAD coordinators through a listserv. The non-probability sample consisted of 36 nurses across the United States. Bivariate analyses identified a number of areas of difference in respondent's levels of moral distress based on specific responsibilities associated with their role as a VAD coordinator. These findings indicate team communication, competence, and location of VAD discontinuation may be important factors related to VAD coordinators' distress. Future research is needed with larger sample sizes and continued exploration of the impact of specialized training and curricula content. [ABSTRACT FROM AUTHOR]

Objectives: To describe individual views, wishes, and preferences for end of life care and to report UK anaesthetists' personal perspectives.Methods: The 'bigconversations' questionnaire was developed by modifying an existing framework for end of life discussions. An online cross-sectional survey of UK anaesthetists was then conducted using the questionnaire in January 2019.Results: The bigconversations questionnaire was validated as measuring the important aspects of end of life care by an expert panel and was found to have moderate test-retest reliability. Responses were received from 760/1913 (40%) of those invited to take part. Overall, 698/760 (92%) of respondents wished to be well informed about their condition and prognosis and 518/760 (68%) wanted to be heavily involved in decision-making about their health. Meanwhile, 639/760 (84%) of respondents would choose to forego treatment aimed at prolonging life should that life be of poor quality. The desire to spend time with family was a theme which arose from the qualitative analysis.Conclusion: This study provides the first systematic description of UK doctors', specifically anaesthetists', personal preferences for end of life care. Broad trends were identified: to be well informed; to avoid high-intensity medical treatments if terminally unwell; to spend remaining time with family and friends; and to be symptom-free and well cared for. However, a substantial minority expressed different, indeed opposite, opinions. This variation highlights that good quality end of life care must be driven by discussion of an individual's values, wishes, and preferences. [ABSTRACT FROM AUTHOR]

There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current international evidence base relating to children's EOL care at home. A systematic scoping review was conducted in accordance with PRISMA-ScR reporting guidelines. Seven databases were searched to identify papers published between 2000 and 2018. Eligibility criteria included papers reporting children's EOL care with specific relation to: home being the preferred place of death; services providing EOL care at home; family experiences of receiving support when their child died at home and professionals' experiences of delivering this care. Twenty-three papers met the eligibility criteria and were included in the review. Engagement of families in EOL care planning discussions was identified as a key factor to facilitate choice of setting. Consistent themes from the data suggest that providing access to care in the home 24/7 by a team of professionals with specialist pediatric palliative care knowledge is an essential aspect of any model of home-based EOL care. This is the first comprehensive review of home-based EOL care for children which offers a valuable contribution to policy, practice and research. The evidence mapped and synthesised in this review can inform the development of services to facilitate the provision of EOL care at home in line with the unique wishes and needs of children and families. • There is a requirement to share best practice in how to provide EOL care at home for children and their families. • Existing evidence suggests that home-based EOL care services must be able to provide access to care and support 24 h a day and seven days a week. • Parents want support from specialist palliative care professionals and be enabled to remain in their role as 'parents' at their child's end of life and through death. [ABSTRACT FROM AUTHOR]

Due to low levels of planned care, older adults of underrepresented communities tend to experience higher rates of unwanted treatments at end of life (EOL). The purpose of this review was to identify factors that may explain differences in EOL care preferences and planning between older adults from the general population and ethnically diverse populations. We hypothesized that culture-specific factors may be fundamental. To describe similarities and differences, we conducted a comprehensive literature search using keywords and subject headings. Findings from 14 studies were critically examined, grouped, and compared across studies and populations. While studies on general populations showed the significance of health and sociodemographic factors, studies on underrepresented groups frequently cited the importance of spirituality, belief systems, acculturation, healthcare system distrust, and social networks. [ABSTRACT FROM AUTHOR]

The prescription of injectable anticipatory medications ahead of possible need for last-days-of-life symptom relief is established community practice internationally. Healthcare teams and policy makers view anticipatory medication as having a key role in optimising effective and timely symptom control. However, how these medications are subsequently administered (used) is unclear and warrants detailed investigation to inform interdisciplinary practice and guidance. To identify the frequency, timing and recorded circumstances of the administration of injectable end-of-life anticipatory medications prescribed for patients living at home and in residential care. A retrospective mixed-methods observational study using general practitioner (family doctor) and community nursing held clinical records. Community-based care in two English counties. 167 deceased adult patients (aged 18 +) registered with eleven general practitioner practices and two associated community nursing services. These were patients prescribed anticipatory medications, identified from the 30 most recent deaths per practice. Patients died between 1 March 2017 and 25 September 2019, from any cause except trauma, sudden death or suicide. Patient characteristics, anticipatory medication discussions, recorded administration contexts and decision-making, medication details, recorded symptom control and comfort at death were collected from clinical records. Data analysis combined quantitative and qualitative analyses in a mixed methods approach. Anticipatory medications were administered to 59.9 % (100/167) patients, commenced between 0 and 586 days before death (median 3 days). Their usage was similar for patients who died from cancer and non-cancer conditions. Anticipatory medications were almost universally started and titrated by visiting nurses. Eleven patients had medications started between 59 days and 586 days before death for recorded reversible non-end-of-life care conditions. Only 5 % (5/100) of patient records contained detailed accounts of patient participation in decisions to start medications: four were recorded as being reluctant to commence medications but agreed to trial injections to relieve symptoms. Crucially, there was recurrent under-recording of the effectiveness of injectable medications and patient comfort. Prescribed medications were commonly administered by visiting community nurses to help manage last-days-of-life symptoms. However, patient records infrequently referred to the effectiveness of administered medication and perceived patient comfort. Most recorded references to patient and family preferences for involvement in anticipatory medication decision-making and their experiences of care were brief and perfunctory. More detailed information should be routinely recorded in clinical records to enable assessment of the appropriate and effective use of anticipatory medicines and how inter-professional collaboration and services could be developed to provide adequate twenty-four-hour cover. Effectiveness of injectable end-of-life symptom control medications and patient comfort often under-recorded @Ben_Bowers__ @PELi_Cam @TheQNI. [ABSTRACT FROM AUTHOR]

Objective: End-of-life communication has been largely recognized to promote quality end-of-life care in nursing home (NHs) by increasing residents' likelihood of receiving comfort-oriented care. This scoping review summarizes what is known about the potential mechanisms by which end-of-life communication may contribute to palliative-oriented care in NHs.Methods: Using the framework proposed by Arksey and O'Malley and refined by the Joanna Briggs Institute methodology, five literature databases were searched. We extracted 2159 articles, 11 of which met the inclusion criteria: seven quantitative, three qualitative, and one mixed-methods study.Results: Three mechanisms were identified: a) promotion of family carers' understanding about their family member's health condition, prognosis, and treatments available; b) fostering of shared decision-making between health care professionals (HCPs) and residents/family carers; and c) using and improving knowledge about residents' preferences.Conclusion: Family carers' understanding, shared decision-making, and knowledge of residents' preferences contribute to palliative-oriented care in NHs.Practice Implications: Discussions about end-of-life should take place early in a resident's disease trajectory to allow time for family carers to understand the condition and participate in subsequent, mindful, shared decision-making. HCPs should conduct systematic and thorough discussions about end-of-life treatment options with all cognitively competent residents to promote informed advance directives. [ABSTRACT FROM AUTHOR]

Paediatric palliative care and neurodisability are two relatively new, evolving paediatric sub-specialities that have increasing relevance in the current paediatric landscape. For many people palliative care has been synonymous with end of life care, but in paediatrics it encompasses much more and is for all children with life-threatening or life-limiting conditions, from the point of diagnosis. This breadth of focus is demonstrated well through the interface between paediatric palliative care and paediatric neurodisability. In this article we explore this unique interface through the three domains of complex symptom management, advanced care planning and end of life care. We describe the practicalities involved in all three areas and highlight the importance of early referral and the process of "dual" or "parallel" planning. We cover in more depth the specific management of the symptoms: dystonia/abnormalities of muscle tone, seizures, pain, agitation, secretions, respiratory failure, and gut failure. [ABSTRACT FROM AUTHOR]

The provision of appropriate end of life care for patients who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare, can be difficult and stressful for the nurse. To date, research has focused predominately on nurses' experiences of end of life care for the Muslim patient who is an immigrant in another country. To critically review the literature related to the lived experiences of non-Muslim expatriate nurses providing end of life care for Muslim patients in their home country. Integrative Literature Review Comprehensive online search of Library Databases: Ovid, CINAHL, EBSCOHost; MEDLINE; Science Citation Index Expanded; PubMED; Web of Science; PROQUEST, and Scopus. An integrative review of literature published within the dates January 2000 – July 2017. Included articles were published in the English language, peer reviewed/refereed, and focused on nurses' experiences. Both qualitative and mixed method studies describing the experience of non-Muslim nurses providing nursing care to Muslim patients in a country that was predominately Muslim were included. Initially 74 articles were found of which nine met the inclusion criteria. Research has been conducted predominantly within the Kingdom of Saudi Arabia, with one article from Bahrain and one other jointly from Kingdom of Saudi Arabia and the United Arab Emirates. The research indicates that expatriate nurses view themselves as powerless patient advocates, are hindered by the nurse-patient-family-physician quadriad structure, language and differing beliefs about communicating death, and negotiating culturally safe care is emotionally challenging. This review highlights that the stressors associated with misalignment of expectations cause emotional and physical distress for the nurses. When nurses were focused on clinical care, they were unable to accommodate cultural practices that were important to the patient and family, contributing to increasing stress. Researchers have sought to capture this distress and make some sense of its impact. How nurses can provide culturally safe care, in countries with cultural practices quite different from their own, bears further investigation. [ABSTRACT FROM AUTHOR]

Objective: The goal of palliative care is to improve quality of life when recovery is no longer possible. The study's objective was to widen our vision of potential (unspoken) needs at the end of life with patients, close relatives, nurses, and general practitioners to aim at more versatile but personal care. The question asked was how important patients, close relatives, and healthcare providers considered the 11 core themes in defining a good death, as described in the 2016 article "Defining a good death" by Meier et al. METHODS: Specific questionnaires for general practitioners, nurses, patients, and family members were distributed in the working area of the regional palliative care network, Aalst-Dendermonde-Ninove, with the cooperation of five local quality groups, two nursing homes, and two groups of home care nurses, and data were analyzed.Results: Questionnaires were completed by 67 nurses, 57 general practitioners, 16 patients, and 8 family members. Although the 34 subthemes were generally considered important for classifying a death as a good one, there were still significant differences between general practitioners and nurses, men and women, and different age groups. Nurses found 9 of the 34 themes significantly more important than general practitioners. All groups believed a pain-free death was most important. General practitioners, nurses, patients, and close relatives found the following themes important: support of family, respect for patient as an individual, being able to say goodbye, and euthanasia in case of unbearable suffering.Conclusion: In agreement with the patient, medical care should focus on a pain-free situation during the last phase of life and not on exhausting possible treatments to prolong life unnecessarily. Appropriate care at the end of life can be broader, and all 34 subthemes can be important in early healthcare planning. Significant differences between general practitioners and nurses deserve attention because patients and family members expect that healthcare providers will work together as a team. [ABSTRACT FROM AUTHOR]

Background: Chronic heart failure is a complex and multifaceted syndrome characterised by an unpredictable trajectory, high symptom burden and reduced quality of life. Although palliative care is recommended, patient, provider and system factors limit access.Aim: To examine the knowledge, attitudes and perspectives of health care professionals towards end of life care and palliative care for patients with chronic heart failure.Design: This is an integrative review.Data Sources: CINAHL, Academic Search Complete and SCOPUS were searched. Specific inclusion criteria and search terms were used. The integrative review method entailed analysing data from primary articles using the constant comparison method and then synthesising data.Results: Twenty-six (26) articles were selected that explored health care professionals' perspectives towards end of life care and palliative care. The categories that emerged were grouped into patient, provider and system issues. Most health care professionals involved in providing care to heart failure patients have misperceptions of palliative care, often confusing it with end of life and hospice care. This hinders patients' access to palliative care as determining the end of life period in heart failure is difficult.Conclusions: Exploring health care professionals' perspectives towards the delivery of end of life care and palliative care is important for understanding how their practice influences the delivery of palliative care for heart failure patients. Emphasis on increasing awareness of the principles of palliative care in the health care community, as well as addressing organisational issues will improve the care delivered to these patients. [ABSTRACT FROM AUTHOR]

All of us, without exception, must sooner or later face the inevitability of death. However, as comparative studies of different cultures show, the idea that death is something to be feared, denied or hidden away is far from universal. Undeniably, many people do not have a 'good' death, and those with a terminal illness experience suffering, pain, and even despair, a sense of dignity lost. But is this the onlypossible narrative? In 2014, and again in 2019, I had the opportunity to spend time as an observer in a palliative care unit. I hold a BA, a PhD in Humanities, and since 2014 my research has focused on end of life care. Even though I work in a clinical lab, the day to day activity in a clinical setting is a distant reality. However, at no other point in my life have I experienced a stronger sense of 'reality'-the reality of life, of death, of what it means to love someone, of one's own life entwined with that of another person. Witnessing the end-of-life can be a profound experience-what Kant would call the sublime-and it can unsettle, in a good way, anyone who comes to encounter it while unaware of its potential. My aim in this paper is to explain why I believe that the end of life in a palliative care context is an opportunity to experience the sublime and an authentic transformative experience. Finally, I describe four short stories to better understand what the experience of the sublime might be in the context of clinical practice. [ABSTRACT FROM AUTHOR]

Goals of care conversations can promote high value care for patients with serious illness, yet documented discussions infrequently occur in hospital settings. We sought to develop a quality improvement initiative to improve goals of care documentation for hospitalized patients. Implementation occurred at an academic medical center in Pittsburgh, Pennsylvania. Intervention included integration of a 90-day mortality prediction model grouping patients into low, intermediate, and high risk; a centralized goals of care note; and automated notifications and targeted palliative consults. We compared documented goals of care discussions by risk score before and after implementation. Of the 12,571 patients hospitalized preimplementation and 10,761 postimplementation, 1% were designated high risk and 11% intermediate risk of mortality. Postimplementation, goals of care documentation increased for high (17.6%–70.8%, P < 0.0001) and intermediate risk patients (9.6%–28.0%, P < 0.0001). For intermediate risk patients, the percentage of goals of care documentation performed by palliative medicine specialists increased from pre- to postimplementation (52.3%–71.2%, P = 0.0002). For high-risk patients, the percentage of goals of care documentation completed by the primary service increased from pre-to postimplementation (36.8%–47.1%, P = 0.5898, with documentation performed by palliative medicine specialists slightly decreasing from pre- to postimplementation (63.2%–52.9%, P = 0.5898). Implementation of a goals of care initiative using a mortality prediction model significantly increased goals of care documentation especially among high-risk patients. Further study to assess strategies to increase goals of care documentation for intermediate risk patients is needed especially by nonspecialty palliative care. [ABSTRACT FROM AUTHOR]

Abstract Background A need for improved education and training for hospital staff caring for patients in the last year of life was identified at an urban UK hospital. Sequential Simulation (SqS Simulation ™) is a type of simulation that recreates a patient's journey, considering the longitudinal element of care and how this might impact on the patient's experiences, wishes and needs. Objectives The aim of this study was to investigate a new end of life care training intervention for multi-professional hospital staff, and its effect on their confidence in managing patients at the end of their life. Setting/Participants Based on the results of a formal Training Needs Analysis, four SqS Simulation™ specialty-based courses were designed for general medical and surgical multidisciplinary teams in an acute UK hospital. Methods Over three months, seven SqS Simulation™ sessions were attended by fifty-seven multidisciplinary healthcare professionals. A quasi-experimental mixed-methods study was conducted using open and closed-ended questionnaires, pre and post-intervention. Changes in course attendees' confidence levels were analysed and qualitative data from free-text answers informed potential reasons for any differences identified. Results Confidence improved for all professional cohorts (p < 0.001). The differences were found to be highly significant for 'doctors' (p < 0.001), significant for 'therapists' (p = 0.02) and not significant for the 'nurses' cohort (p = 0.238). This was explored further using a qualitative explanatory framework. Categories included: Communicating with Families; Teamwork; Goal Planning; Do Not Attempt Cardiopulmonary Resuscitation; Course Usefulness; Prior Training; and Clinical Experience. Conclusion This study has shown an overall improvement in confidence across disciplines after attending a SqS Simulation™ course. The differences in quantitative results between disciplines were explored through the qualitative data and revealed a difference in what the professionals gained from it. Further studies are required to assess its effectiveness in maintaining confidence of end of life care in practice, as well as its benefit to patient outcomes. [ABSTRACT FROM AUTHOR]

Prison populations across the world are increasing. In the United Kingdom, numbers have doubled in the last two decades, and older prisoners now constitute the fastest growing section of the prison population. One key reason for this shifting prisoner demographic is the growing numbers of men convicted of ‘historic’ sexual offences, many of whom are imprisoned for the first time in old age, and housed in prisons not suited to their needs. These demographic changes have profound consequences, including increased demand for health and social care in prison, and rising numbers of anticipated deaths in custody. Using the findings from a recently completed study of palliative care in prison, this paper proposes that older prisoners face a ‘double burden’ when incarcerated. This double burden means that as well as being deprived of their liberty, older people experience additional suffering by not having their health and wellbeing needs met. For some, this double burden includes a ‘de facto life sentence’, whereby because of their advanced age and the likelihood that they will die in prison, they effectively receive a life sentence for a crime that would not normally carry a life sentence. There has been little popular or academic debate concerning the ethical and justice questions that this double burden raises. Drawing on the work of Wacquant and others, the paper proposes that these changes are best understood as unplanned but reasonably foreseeable consequences of neoliberal penal policies. Although the paper focuses on the UK (which by comparison with other European countries has high rates of imprisonment), many of the challenges discussed are emerging in other countries across the world. This paper illustrates starkly how neoliberal policies and discourses have shaped the expansion and composition of the prison population with its consequent implications for health and justice. [ABSTRACT FROM AUTHOR]

ECMO has proven to be a life-saving intervention for a variety of disease entities with a high rate of survival in the neonatal population. However, ECMO requires clinical teams to engage in many ethical considerations. Even with ongoing improvements in technology and expertise, some patients will not survive a course of ECMO. An unsuccessful course of ECMO can be difficult to accept and cause a great deal of angst. These questions can result in real conflict both within the care team, and between the care team and the family. Herein we explore a range of ethical considerations that may be encountered when caring for a patient on ECMO, with a particular focus on those courses where it appears likely that the patient will not survive. We then consider how a palliative care approach may provide a tool set to help engage the team and family in confronting the difficult decision to discontinue ECMO. [ABSTRACT FROM AUTHOR]

Families who perceive themselves as prepared for an impending death experience reduced psychological burden during bereavement. Understanding which interventions promote death preparedness in families during end-of-life care in intensive care will inform future intervention development and may help limit the burden of psychological symptoms associated with bereavement. To identify and characterise interventions that help prepare families for the possibility of death in intensive care, incorporating barriers to intervention implementation, outcome variables and instruments used. Scoping review using Joanna Briggs methodology, prospectively registered and reported using relevant guidelines. A systematic search of six databases from 2007 to 2023 for randomised controlled trials evaluating interventions that prepared families of intensive care patients for the possibility of death. Citations were screened against the inclusion criteria and extracted by two reviewers independently. Seven trials met eligibility criteria. Interventions were classified: decision support, psychoeducation, information provision. Psychoeducation involving physician-led family conference, emotional support and written information reduced symptoms of anxiety, depression, prolonged grief, and post-traumatic stress in families during bereavement. Anxiety, depression, and post-traumatic stress were assessed most frequently. Barriers and facilitators to intervention implementation were seldom reported. This review provides a conceptual framework of interventions to prepare families for death in intensive care, while highlighting a gap in rigorously conducted empirical research in this area. Future research should focus on theoretically informed, family-clinician communication, and explore the benefits of integrating existing multidisciplinary palliative care guidelines to deliver family conference within intensive care. Intensive care clinicians should consider innovative communication strategies to build family-clinician connectedness in remote pandemic conditions. To prepare families for an impending death, mnemonic guided physician-led family conference and printed information could be implemented to prepare families for death, dying and bereavement. Mnemonic guided emotional support during dying and family conference after death may also assist families seeking closure. [ABSTRACT FROM AUTHOR]

Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like caregivers of adult patients, struggle to initiate this conversation. Building Evidence for Effective Palliative/End of Life Care for Teens with Cancer is a longitudinal, randomized, controlled, single-blinded clinical trial aimed at evaluating the efficacy of FAmily CEntered disease-specific advance care planning (ACP) for teens with cancer (FACE-TC). A total of 130 dyads (260 subjects) composed of AYAs 14–20 years old with cancer and their family decision maker (≥ 18 years old) will be recruited from pediatric oncology programs at Akron Children's Hospital and St. Jude Children's Research Hospital. Dyads will be randomized to either the FACE-TC intervention or Treatment as Usual (TAU) control. FACE-TC intervention dyads will complete three 60-minute ACP sessions held at weekly intervals. Follow-up data will be collected at 3, 6, 12, and 18 months post-intervention by a blinded research assistant (RA). The effects of FACE-TC on patient-family congruence in treatment preferences, quality of life (QOL), and advance directive completion will be analyzed. FACE-TC is an evidenced-based and patient-centered intervention that considers QOL and EOL care according to the AYA's representation of illness. The family is involved in the ACP process to facilitate shared decision making, increase understanding of the AYA's preferences, and make a commitment to honor the AYA's wishes. [ABSTRACT FROM AUTHOR]

Women with a gynaecological malignancy often suffer significant symptom burden, both physically and psychologically, throughout the course of their disease. Despite advances in treatment, up to 25% of women diagnosed with a gynaecological malignancy will die from recurrent disease. Early palliative care involvement can provide a holistic approach to care with the benefit of improving symptom control and quality of life for both the patient and carer as well as lowering resource utilisation at the end of life. Palliative care can be offered alongside curative or life prolonging treatment as well as at end of life. This article reviews the management of common physical symptoms and complications experienced by patients with advanced gynaecological malignancy. [ABSTRACT FROM AUTHOR]