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Background: Palliative care evolution focuses on education and medication accessibility. As little as 12% of palliative care needs are met. Assessment of the domains of Palliative care and patients' and families' experience are essential in life-limiting conditions. The Lagos University Teaching Hospital (LUTH), have the National Cancer Centre without offering palliative care services. Aim: The aim was to examine pattern of admissions and needs assessment for palliative services among patients admitted into LUTH wards. Materials and method: Responses were entered into a data sheet inputted into Epi info version 7.2. Descriptive characteristics of the participants were presented as frequencies and percentages for age, sex, pattern of disease, domains of Palliative care, Advance care Plan, Preparation for home care, death and Education about the illness and category of medical conditions (palliative and non-palliative conditions). Together for Short Lives (TfSL) tool was used to categorize respondents' conditions into Palliative and Non-palliative conditions. Chi-square test was used to determine association between independent variables (pattern of diagnoses, stage of disease, advanced care plan, preparation for home care/ death and education on illness) and dependent variables (category of medical condition). Chi-square test was also used to explore the association between specialty of the managing doctor (independent variable) and Advance care plan (dependent variable). The level of statistical significance was P-value < 0.05. Results: 80.6% of the respondents had palliative care conditions, 83.7% had family members as their caregiver while 13.2% of the participants had no caregiver and 65.9% had no advance care plan. There was no preparation for home care or death in 72.1%, 70.5% had education about their illness, and 68.2% were in the advanced stage of their disease. Participants attending the surgery non-trauma unit (51.6%) were more likely to have advance care plans. Adults were more likely to have palliative care conditions (79.8%) compared to children (20.2%), and was statistically significant. Conclusion: Majority of the participants need palliative care services but are unavailable and unmet and the most predominant condition was cancer. Majority had no advance care plan or preparation for home care or death despite having advanced stage of the disease. This survey emphasized the need for symptom management, communication and provision of support. [ABSTRACT FROM AUTHOR]

Background: Thirst is the body's natural urge to replenish fluids in response to a deficiency in hydration. Patients at the end of life gradually lose their independence and reach a point where they become unable to express their needs and can no longer drink on their own. In palliative care, the main advice is to provide regular oral care to relieve symptoms such as dry mouth and thirst. However, according to previous studies the prevalence of thirst and dry mouth remains. Aim: The aim of this study was to describe palliative care, nurses' views and experiences of thirst in end-of-life care in specialist palliative care units. Methods: A qualitative interview study with an inductive approach was conducted. Eighteen nurses working in six different specialist palliative care units in different hospitals in Sweden were interviewed. The interviews were transcribed and analysed with a content analysis approach according to Graneheim and Lundman. Results: When nurses discuss thirst, they perceive thirst as a problem for the patient. This is attributable to various factors, including the patient breathing with an open mouth, a reduced level of awareness, and negligence on the part of the nursing staff. Signs of thirst are dry mouth, and frequently and intense sucking on the oral care stick during oral care. It also emerged that not all nurses perceived that dying patients experienced thirst. They believe that thirst is something that is reduced in the dying patient in the same way as hunger. The most important thing to them is to relieve the dry mouth by providing good oral care. Several issues, such as a lack of guidelines paired with the patient's reduced consciousness and hence his/her lack of communication, make assessing thirst problematic. Conclusion: Nurses have different thoughts and experiences about thirst, where some perceive patients as thirsty while others perceive them as having a dry mouth. Nurses expressed that both evidence and guidelines are lacking. [ABSTRACT FROM AUTHOR]

Aim: To describe nurses' experiences of ethical challenges in relation to thirst in terminally ill patients in specialist palliative care units. Research design: A qualitative, reflexive thematic design with an inductive analysis was used. Participants and research context: Eighteen qualitative interviews with nurses working in six different specialist palliative care units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results: This study identified four themes that reflect ethical challenges experienced by nurses in the palliative care regarding thirst: Harmful infusions interfere with peaceful dying; conflict between tradition and personal experience; What is the right intervention to quench thirst? and; Lack of standard procedures, competence and interest among team members. Conclusion: Palliative care nurses experience a number ethical challenges in relation to thirst in dying patients. The main challenge is the provision of fluids to dying patients via artificial infusions, which nurses struggle with, as they do not want to interfere with a peaceful dying process. [ABSTRACT FROM AUTHOR]

Background: France allows deep sedation for pain relief, but not for euthanasia. In anticipation of an increase in home-based palliative care, the role of general practitioners is central to the design of outpatient palliative care services. This study aimed to describe the knowledge, attitudes, and practices of general practitioners in mainland France regarding palliative and end of life care. Methods: This was a national descriptive cross-sectional study within the Sentinelles network. Self-report questionnaires were distributed to general practitioners between November 2020 and November 2021. A descriptive analysis was carried out. Results: Out of the 123 participating general practitioners, 84% had received academic training in palliative care (n = 104). While a significant majority (69%) expressed comfort in pain management, only a quarter (25%) declared that they were competent at indicating deep and continuous sedation for pain relief. Awareness of outpatient palliative care facilities close to their place of practice such as hospitalization at home was over 97% (n = 117/120). Awareness of hospital facilities, including identified palliative care beds on hospital wards and palliative care units, was lower (75% (n = 59/79) and 86% (n = 86/100), respectively). Conclusions: Our results suggest that French general practitioners are reasonably aware of palliative care resources available. However, there is room for improvement, particularly in understanding hospital-based facilities. Furthermore, a quarter of the general practitioners expressed discomfort with deep and continuous sedation for pain relief, highlighting the need for increased training in this specific aspect of palliative and end of life care. [ABSTRACT FROM AUTHOR]

Background: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. Aim: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? Methods: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. Results: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher". Conclusion: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices. [ABSTRACT FROM AUTHOR]

Background: Symptom assessment is key to effective symptom management and palliative care for patients with advanced cancer. Symptom prevalence and severity estimates vary widely, possibly dependent on the assessment tool used. Are symptoms specifically asked about or must the patients add them as additional symptoms? This study compared the prevalence and severity of patient-reported symptoms in two different versions of a multi-symptom assessment tool. In one version, three symptoms dry mouth, constipation, sleep problems were among those systematically assessed, while in the other, these symptoms had to be added as an "Other problem". Methods: This retrospective cross-sectional study included adult patients with advanced cancer at an inpatient palliative care unit. Data were collected from two versions of the Edmonton Symptom Assessment System (ESAS): modified (ESAS-m) listed 11 symptoms and revised (ESAS-r) listed 9 and allowed patients to add one "Other problem". Seven similar symptoms were listed in both versions. Results: In 2013, 184 patients completed ESAS-m, and in 2017, 156 completed ESAS-r. Prevalence and severity of symptoms listed in both versions did not differ. In ESAS-m, 83% reported dry mouth, 73% constipation, and 71% sleep problems, but on ESAS-r, these symptoms were reported by only 3%, 15% and < 1%, respectively. Although ESAS-r severity scores for these three symptoms were higher than on ESAS-m, differences did not reach statistical significance. Conclusion: We identified significant differences in patient symptom reporting based on whether symptoms like dry mouth, obstipation and sleep problems were specifically assessed or had to be added by patients as an "Other problem". [ABSTRACT FROM AUTHOR]

Background: Most patients in specialized palliative care units need nursing support to perform activities of daily living (ADL), such as using a toilet or transferring out of a bed or chair. To deliver high-quality ADL support that facilitates patients' movement and protects nurses' musculoskeletal health, nurses need appropriate knowledge and skills. The objective of this study is to investigate the impact of education based on the "Advanced Kinaesthetics in Palliative care (AdKinPal) program" on the competence in Kinaesthetics, self-efficacy regarding ADL support in end-of-life care and musculoskeletal complaints of nurses from specialist palliative care units. Methods: A pretest–posttest repeated measures design was applied. The study took place in three specialised units for palliative care in Switzerland between June 2018 and April 2020. All the nurses who worked in participating wards (n = 62) and fulfilled the inclusion criteria were asked to participate. The intervention – the AdKinPal program – is an education-based training program conducted for six months. We took measurements using self-administered questionnaires at three points before and after the intervention. Using descriptive statistics, repeated measurement analysis of variance (ANOVA) and independent-samples t-tests, we analysed the participants' demographic characteristics as well as developments over time and relationships between the three outcome variables: Kinaesthetics competence, self-efficacy regarding ADL support in end-of-life care and musculoskeletal complaints. Results: Fifty-nine nurses and one physiotherapist participated, and 38 participants (63%) responded to all three questionnaires. The AdKinPal training improved the nurses' perceived Kinaesthetics competence and self-efficacy regarding ADL support in end-of-life care. Participants who reported lower back, neck or shoulder pain had a significantly lower Kinaesthetics competence. Conclusions: The AdKinPal program can raise nurses' Kinaesthetics competence. Thereby, patients' autonomy and quality of life could be supported, and symptom management could be enhanced in a holistic manner. Furthermore, the AdKinPal program fosters nurses' self-efficacy in ADL support in end-of-life care. A strong sense of self-efficacy enhances professional well-being in many ways. Additionally, the nursing staff's musculoskeletal health can be promoted by enhancing their Kinaesthetics competence. Trial registration: DRKS00015908. Registration Date 23.11.2018. [ABSTRACT FROM AUTHOR]

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

Background: Terminally ill patients often experience exacerbations of diseases that render mainstream medicine ineffective in relieving symptoms, prompting attempts at complementary and alternative medicine (CAM). This study collected data from terminally ill patients and their relatives to determine differences between CAM use, behavioral patterns, and perceptions of health information about CAM. Methods: A cross-sectional design using a self-administered questionnaire was adopted. Eight medical institutions in Taiwan with inpatient hospice palliative care units were chosen. Ninety-two terminally ill patients and 267 relatives met the inclusion criteria. The questions concerned the experience of CAM use, the kinds of products/services CAM provided, the purpose of CAM use, the source of CAM information, and the perceptions and attitudes toward CAM. Results: Both terminally ill patients and their relatives have a high proportion of lifetime and one-year prevalence of CAM use (88.0% vs. 88.4%; p = 0.929). CAM use for musculoskeletal and neurological discomfort is higher among terminally ill patients than among their relatives. Relatives/friends are the most frequent sources of information on CAM (53.3% vs. 62.2%; p = 0.133). The percentage of terminally ill patients who discontinued mainstream medical treatment because of CAM use was higher than that of their relatives (18.5% vs. 9.3%; p = 0.026). More than half the terminally ill patients and their relatives had never been asked about CAM by medical staff (64.1% vs. 66.7%), nor had they informed medical professionals about the use of CAM products and services (63% vs. 66.9%). Random inquiries by medical professionals may be associated with increased disclosure of CAM use (terminally ill patients: odds ratio, 9.75; 95% confidence interval, 1.97–48.35 vs. relatives: odds ratio, 5.61; 95% confidence interval, 2.66–11.83). Conclusions: The high prevalence and concealment of CAM use in terminally ill patients should be considered. Medical professionals should establish a friendly and barrier-free communication model, encourage patients to share CAM experiences, and provide evidence-based information on the use of CAM products and services, to reduce the potential damage caused by harmful use. [ABSTRACT FROM AUTHOR]

Background: The role of the resource nurse aims at bridging the gap between the specialist nurses and the nurses who work in non-specialist wards. The role is established internationally and used in a wide area of clinical settings. The resource nurse is promoting evidence-based practice. Patients with life limiting conditions including cancer and other chronic diseases will likely need palliative care during the trajectory of illness. Due to the complexity of palliative care, both interprofessional help and cooperation between levels of healthcare are considered necessary. Aim: The aim of this study was to explore the perceptions and experiences related to the role of the resource nurse in palliative care in the setting of home health care services and hospitals in Norway, from the perspectives of the resource nurses and the ward nurses. Design: The study has an explorative design with a qualitative approach. Methods: Eight individual interviews were conducted. Audiotaped interview material was transcribed verbatim and the data were analysed using systematic text condensation. The encoded data material provided the basis for writing analytical texts that in turn resulted in meaningful descriptions of the different categories. Results: Four resource nurses and four ward nurses participated in individual interviews. Analysis of the data yielded three categories: 1. Expectations of better competence in the ward. 2. Expectations of better cooperation between professions and different levels of healthcare services. 3. Improvements and hindrances. Conclusion: The resource nurse role is underutilized due to heavy workload and inefficient organization of care. Improvements such as sufficient time resources, support from the ward nurse and cooperation with staff nurses, the resource nurses' role could contribute to increased competence and cooperation interprofessionally and between levels of healthcare. [ABSTRACT FROM AUTHOR]

Background: Patient awareness plays an important role in integrating palliative care into the patient care process. Lack of awareness can create a negative attitude towards palliative care and affect patients' decisions during the treatment process. The present study was conducted to determine the level of knowledge about palliative care in Iranian patients with cancer. Methods: The descriptive study was conducted with a convenience sample of 103 cancer patients admitted to an oncology center in Yazd, Iran, A three-part questionnaire including demographic information, sources of palliative care information and the Palliative Care Knowledge Scale (PaCKS) was used to collect data. All statistical analyses were performed using software SPSS 21. Results: The mean age of patients was 36.2 ± 13.5 years. Of the total, 38.8% of patients received information about palliative care through the media and 36.9% from the treatment team. On a scale of 0 to 13, the mean PaCKS score was 6.7 ± 3.7. A 'good' level of knowledge was reported by 29.1% of participants; however 84.5% stated that they should leave other doctors at the time of receiving palliative care, 71.8% considered palliative care for patients in the last six months of life, 84.5% considered palliative care for patients with cancer, and 70.9% stated that palliative care encourages people to discontinue treatments aimed at treating their disease. Conclusion: Our study found most cancer patients have a moderate to weak level of knowledge and considerable misinformation about palliative care, which highlights the importance of providing palliative care education. The development of training programs in this area could play an effective role in improving patients' knowledge of palliative care. [ABSTRACT FROM AUTHOR]

Background: Acute care and palliative care (PC) are described as different incompatible organisational care cultures. Few studies have observed the actual meeting between these two cultures. In this paper we report part of ethnographic results from an intervention study where a palliative care consultation team (PCCT) used an integrative bedside education approach, trying to embed PC principles and interventions into daily practice in acute wards. Purpose: To study the meeting and interaction of two different care cultures, palliative care and curative acute wards, when a PCCT introduces consulting services to acute wards regarding end-of-life palliative care, focusing on the differences between the cultures. Methods: An ethnographic study design was used, including observations, interviews and diary entries. A PCCT visited acute care wards during 1 year. The analysis was inspired by Spradleys ethnography. Results: Three themes were found: 1) Anticipations meets reality; 2) Valuation of time and prioritising; and 3) The content and creation of palliative care. Conclusion: There are many differences in values, and the way PC are provided in the acute care wards compared to what a PCCT expects. The didactic challenges are many and the PC require effort. [ABSTRACT FROM AUTHOR]

Background: In the last decade, access to national palliative care programs have improved, however a large proportion of patients continued to die in hospital, particularly within internal medicine wards. Objectives: To describe treatments, symptoms and clinical management of adult patients at the end of their life and explore whether these differ according to expectation of death. Methods: Single-centre cross-sectional study performed in the medical and surgical wards of a large tertiary-level university teaching hospital in the north of Italy. Data on nursing interventions and diagnostic procedure in proximity of death were collected after interviewing the nurse and the physician responsible for the patient. Relationship between nursing treatments delivered and patients' characteristics, quality of dying and nurses' expectation about death was summarized by means of multiple correspondence analysis (MCA). Results: Few treatments were found statistically associated with expectation of death in the 187 patients included. In the last 48 h, routine (70.6%) and biomarkers (41.7%) blood tests were performed, at higher extent on patients whose death was not expected. Many symptoms classified as severe were reported when death was highly expected, except for agitation and respiratory fatigue which were reported when death was moderately expected. A high Norton score and absence of anti-bedsore mattress were associated with unexpected death and poor quality of dying, as summarized by MCA. Quality of dying was perceived as good by nurses when death was moderately and highly expected. Physicians rated more frequently than nurses the quality of dying as good or very good, respectively 78.6 and 57.8%, denoting a fair agreement between the two professionals (k = 0.24, P < 0.001). The palliative care consultant was requested for only two patients. Conclusion: Staff in medical and surgical wards still deal inadequately with the needs of dying people. Presence of hospital-based specialist palliative care could lead to improvements in the patients' quality of life. [ABSTRACT FROM AUTHOR]

Background: Spiritual well-being is increasingly investigated in relation to patients' perceived quality of life and is generally thought as having the potential to support patients with cancer who receive palliative care. Until recently, questionnaires used to assess spiritual well-being were developed mainly in the US. The purpose of this study was to translate and use the EORTC- SWB32, a newly developed tool, validated recently in 4 continents, 14 countries, and in 10 languages, to explore relationships of spiritual well-being with quality of life in patients with cancer. Methods: One hundred four patients participated in this study with an average age of 59 years. Of those, 79% were dealing with metastatic cancer. Data collection took place in three oncology centers from two large cities in Cyprus. The acceptability of the translated items was tested. Two questionnaires were employed for the assessment of quality of life and spiritual well-being, developed by the same organization: the EORTC QLQ-C30 and the EORTC QLQ-SWB32. The scores for each tool were analyzed separately and correlations between the two measures were explored. Results: Patients found the items of the SWB32 tool easy to understand and answer. They attested that filling the questionnaire prompted thoughts about their own spirituality. The mean score for Global Spiritual Well-Being was 60.4 (SD = 23.7) and it was associated with the mean scores in the scales "Emotional functioning" and "Cognitive functioning" of the EORTC-QOL-C30 (0.42 and 0.40 respectively, p < 0.01). The mean score for the "Relationship with God" scale (74.9, SD = 29.7) reported by the Cypriot patients is high and compatible with the homogenous spiritual orientation of the island's population. Conclusions: All subscales of the SWB32 tool demonstrated good internal consistency in this study. Significant associations were observed between dimensions of quality of life and spiritual well-being. Additionally, the participants found the items easy to answer consistent with the tool's suggested clinical utility which lays the ground for the application of targeted interventions to enhance spiritual well-being. [ABSTRACT FROM AUTHOR]

Background: Dignity is a basic principle of palliative care and is intrinsic in the daily practice of professionals assisting individuals with incurable diseases. Dignity Therapy (DT) is a short-term intervention aimed at improving the sense of purpose, meaning and self-worth and at reducing the existential distress of patients facing advanced illness. Few studies have examined how DT works in countries of non-Anglo Saxon culture and in different real-life settings. Moreover, most studies do not provide detailed information on how DT is conducted, limiting a reliable assessment of DT protocol application and of its evaluation procedure. The aim of this study was to assess the feasibility and acceptability of a nurse-led DT intervention in advanced cancer patients receiving palliative care. Method: This is a mixed-method study using before and after evaluation and semistructured interviews. Cancer patients referred to a hospital palliative care unit were recruited and provided with DT. The duration of sessions, and timeframes concerning each step of the study, were recorded, and descriptive statistical analyses were performed. The patients' dignity-related distress and feedback toward the intervention were assessed through the Patient Dignity Inventory and the Dignity Therapy Patient Feedback Questionnaire, respectively. Three nurses were interviewed on their experience in delivering the intervention, and the data were analyzed qualitatively. Results: A total of 37/50 patients were enrolled (74.0%), of whom 28 (75.7%) completed the assessment. In 76.7% of cases, patients completed the intervention in the time limit scheduled in the study. No statistically significant reduction in the Patient Dignity Inventory scores was observed at the end of the intervention; most patients found DT to be helpful and satisfactory. Building opportunities for personal growth and providing holistic care emerged among the facilitators to DT implementation. Nurses also highlighted too great of a time commitment and a difficult collaboration with ward colleagues among the barriers. Conclusions: Our findings strongly support the acceptability, but only partially support the feasibility, of nurse-led DT in advanced cancer patients in a hospital setting. Further research is needed on how to transfer the potential benefits of DT into clinical practice. Trial registration: Retrospectively registered on ClinicalTrial.gov NCT04738305. [ABSTRACT FROM AUTHOR]

Background: Palliative care phases (stable, unstable, deteriorating, terminal and bereavement) are routinely used in Australia and the UK to describe the clinical situation of patients and their families and to evaluate the associated care plan. In addition, it serves as a benchmark developed by the Australian Palliative Care Outcome Collaboration (PCOC) and is used nationwide for comparisons between services. In Germany, the concept is not used consistently due to various translations. Furthermore, there is no nationwide systematic approach to routinely assess clinical outcomes in palliative care. The study aims to develop a German version of the palliative care phase definitions by adapting them culturally, and to examine the inter-rater reliability of the adjusted definitions with healthcare professionals. Methods: Mixed-methods approach: Cognitive interview study using 'think aloud' and verbal probing techniques and a consecutive multi-center cross-sectional study with two clinicians independently assigning the phase definitions. Interviewees/participants were selected through convenience and purposive sampling in specialist palliative care inpatient units, advisory and community services and in three specialist palliative care units with doctors, nursing staff and allied health professionals. Results: Fifteen interviews were conducted. Identified difficulties were: Some translated terms were 1) not self-explanatory (e.g. 'family/carer' or 'care plan') and (2) too limited to the medical dimension neglecting the holistic approach of palliative care. (3) Problems of comprehension regarding the concept in general occurred, e.g. in differentiating between the 'unstable' and 'deteriorating' phase. Inter-rater reliability was moderate (kappa = 0.44; 95% CI = 0.39–0.52). The assignment of the phase 'deteriorating' has caused the most difficulties. Conclusion: Overall, the adapted palliative care phases are suitable to use in the German specialist palliative care setting. However, the concept of the phases is not self-explanatory. To implement it nationwide for outcome measurement/benchmarking, it requires further education, on-the-job training and experience as well as the involvement of healthcare professionals in implementation process. For the use of international concepts in different healthcare systems, a deeper discussion and cultural adaptation is necessary besides the formal translation. [ABSTRACT FROM AUTHOR]

Background: Caring for individuals and their families with a life-limiting, symptomatic illness and those who are dying has long been an integral role of palliative care nurses. Yet, over the last two decades, the specialty of palliative care has undergone significant changes in technology and medical treatments which have altered both the disease trajectory and the delivery of palliative care. To date, there is little evidence as to the impact of these medical and nursing advancements on the role of nurses working in palliative care and how in clinical practice these nurses continue to uphold their nursing values and the philosophy of palliative care. Methods: An integrative review was conducted searching seven academic databases from the time period of January 2010 – December 2019 for studies identifying research relating to the role of the palliative care nurse working in specialist palliative care units and hospices. Research articles identified were screened against the inclusion criteria. Data extraction was completed on all included studies and the Crowe Critical Appraisal Tool was utilized to appraise the methodological quality and thematic analysis was performed guided by Braun and Clarke's framework. The review was conducted and reported in lines with PRISMA guidelines. Results: The search yielded 22,828 articles of which 7 were included for appraisal and review. Four themes were identified: (1) enhancing patient-centred care (2) being there (3) exposure to suffering and death (4) nursing values seen but not heard. The findings highlight that while palliative care nurses do not articulate their nurse values, their actions and behaviors evident within the literature demonstrate care, compassion, and commitment. Conclusion: These findings suggest that there is a need for nurses working in specialist palliative care units to articulate, document, and audit how they incorporate the values of nursing into their practice. This is pivotal not only for the future of palliative nursing within hospice and specialist palliative care units but also to the future of palliative care itself. To make visible the values of nursing further practice-based education and research is required. [ABSTRACT FROM AUTHOR]

Background: The children's agency and that exercised by parents and health professionals in palliative care, along with structural limitations imposed by the conditions of inequality, will provide a new perspective from medical anthropology and biomedicine to improve pediatric palliative care in complex therapeutic scenarios. The main purpose of the study was to analyze the ways in which pediatric patients have agency in relation to their parents and palliative care (PC) professionals within the hospital setting, as well as the structural circumstances that constrain said agency. Method: A hospital ethnography (by means of non-participant observation and interviews) of the palliative care (PC) unit in a children's hospital was conducted over the course of six months. A thematic analysis was performed using the ATLAS.ti software. Results: Thirteen cases were reconstructed of underage patients of both sexes patients together with their families; five health professionals were interviewed. The analysis identified the following 6 thematic axes, around which this article is organized: 1. The relationship between the exercise of proxy agency and the medical decisions concerning underage patients. 2. Negotiating agency and support in decision-making. 3. Child autonomy. 4. The experiences of health professionals. 5. Limitations of palliative care. 6. Bureaucratization of palliative care. Conclusions: In pediatric palliative care, agency is a process whereby different agencies intertwine: lack of pediatric patients 'agency, the parents' agency, the parents' agency as representatives of their children (proxy agency), and the agency of health professionals. The concept of relational agency is proposed, defined as a set of group actions and decision-making centered around the pediatric patients's agency and the proxy agency. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers (IC) are often overshadowed by the attention required by the terminally ill. This study aims to reveal the estimated proportion of caregiver burden, psychological manifestations and factors associated with caregiver burden among IC in the largest specialized Palliative Care Unit (PCU) in Malaysia. Methods: This was a cross-sectional study involving IC attending a PCU. Caregiver burden and psychological manifestations were measured using previously translated and validated Zarit Burden Interview and DASS-21 questionnaires respectively. Two hundred forty-nine samples were selected for analysis. Result: The mean ZBI score was 23.33 ± 13.7. About half of the population 118(47.4%) was found to experienced caregiver burden whereby majority have mild to moderate burden 90(36.1%). The most common psychological manifestation among IC is anxiety 74(29.7%) followed by depression 51(20.4%) and stress 46(18.5%). Multiple logistic regression demonstrated that women who are IC to patients with non-malignancy were less likely to experience caregiver burden. IC who were highly educated and spent more than 14 h per day caregiving were at least twice likely to experience caregiver burden. Finally, those with symptoms of depression and anxiety were three times more likely to suffer from caregiver burden. Conclusion: Caregiver burden among IC to palliative patients is prevalent in this population. IC who are men, educated, caregiving for patients with malignancy, long hours of caregiving and have symptoms of depression and anxiety are at risk of developing caregiver burden. Targeted screening should be implemented and IC well-being should be given more emphasis in local policies. [ABSTRACT FROM AUTHOR]

Background: Many deaths in Norway occur in medical wards organized to provide curative treatment. Still, medical departments are obliged to meet the needs of patients at the end of life. Here, we analyse the electronic patient record regarding documentation of the transition from curative to palliative care (i.e. the 'turning point'). Considering the consequences of these decisions for patients, they have received surprisingly little attention from researchers. This study aims to investigate how the patient record denotes reasons for the shift from curative treatment to palliation and how texts involve voices of the patient and their families. Methods: The study comprised excerpts from electronic patient records retrieved from medical wards in three urban hospitals in Norway. We executed a retrospective analysis of anonymized extracts from 16 electronic patient records, searching for documentation on the transition from curative to palliative care. Results: In the development of the turning point, the texts usually shift from statements about the patient's clinical status and technical findings to displaying uncertainty and openness to negotiation with different textual voices. This shift may represent a need to align or harmonize the attitudes of colleagues, family, and patient towards the turning-point decision. The patient's voice is mostly absent or reported only briefly when, in their notes, nurses gave an account of the patient's opinion. None of the physicians' notes provided a detailed account of patient attitudes, wishes, and experiences. Conclusion: In this article, we have analysed textual representations of patient transitions from curative to end-of-life care. The 'reality' behind the text has not been our concern. As the only documentation left, the patient record is an adequate basis for considering how patients are estimated and cared for in their last days of life. [ABSTRACT FROM AUTHOR]

Background: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit. Methods: A 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre- and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records. Results: One hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding life-sustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn. Conclusions: The main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization. This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families. Methods: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis. Results: Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients' openness to their own needs). Conclusions: To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals' communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged. [ABSTRACT FROM AUTHOR]

Background: Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death.Methods: We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors.Results: One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40-9.90) and living with someone (OR 2.19, 1.33-3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14-5.03). Conversely, functional independence (OR 1.05, 1.04-1.06) and valuing quality of life (OR 3.11, 2.89-3.36) were associated with dying at home. There was a mismatch between preferences and achievements - of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference.Conclusion: Although home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply 'achieved preferences'. [ABSTRACT FROM AUTHOR]

Background: Confinement to an in-patient hospital ward impairs patients' sense of social support and connectedness. Providing the means, through communication technology, for patients to maintain contact with friends and family can potentially improve well-being at the end of life by minimizing social isolation and facilitating social connection. This study aimed to explore the feasibility of introducing internet-based communication and information technologies for in-patients and their families and to describe their experience in using this technology. Methods: A cross-sectional survey design was used to describe patient and family member experiences in using internet-based communication technology and health care provider views of using such technology in palliative care. Participants included 13 palliative in-patients, 38 family members, and 14 health care providers. An iPad or a laptop computer with password-protected internet access was loaned to each patient and family member for about two weeks or they used their own electronic devices for the duration of the patient's stay. Quantitative and qualitative data were collected from patients, families, and health care providers to discern how patients and families used the technology, its ease of use and its impact. Descriptive statistics and paired sample t-tests were used to analyze quantitative data; qualitative data were analyzed using constant comparative techniques. Results: Palliative patients and family members used the technology to keep in touch with family and friends, entertain themselves, look up information, or accomplish tasks. Most participants found the technology easy to use and reported that it helped them feel better overall, connected to others and calm. The availability of competent, respectful, and caring technical support personnel was highly valued by patients and families. Health care providers identified that computer technology helped patients and families keep others informed about the patient's condition, enabled sharing of important decisions and facilitated access to the outside world. Conclusions: This study confirmed the feasibility of offering internet-based communication and information technologies on palliative care in-patient units. Patients and families need to be provided appropriate technical support to ensure that the technology is used optimally to help them accomplish their goals. [ABSTRACT FROM AUTHOR]

Background: Inpatient palliative care is important for patients with terminal pancreatic cancer. However, the differences between inpatient palliative care and acute hospital care for inpatients with pancreatic cancer have not been explored in a population-based study. Methods: This population-based nationwide study was conducted using data from the Taiwan National Health Insurance database to analyze the differences between inpatient palliative care and acute hospital care for inpatients with pancreatic cancer. We identified 854 patients with terminal pancreatic cancer, who had received in-hospital end-of-life care between January 2003 and December 2006. These patients were then sub-divided and matched 1:1 (using propensity score matching) according to whether they received inpatient palliative care (n = 276) or acute hospital care (n = 276). These groups were subsequently compared to evaluate any differences in the use of aggressive procedures, prescribed medications, and medical costs. Results: Inpatient palliative care was typically provided by family physicians (39 %) and oncologists (25 %), while acute hospital care was typically provided by oncologists (29 %) and gastroenterologists (24 %). The inpatient palliative care group used natural opium alkaloids significantly more frequently than the acute hospital care group (84.4 % vs. 56.5 %, respectively; P < 0.001). The inpatient palliative care group also had shorter hospital stays (10.6 ± 11.1 days vs. 20.6 ± 16.3 days, respectively; P < 0.001), fewer aggressive procedures, and lower medical costs (both, P< 0.005). Conclusions: Compared to patients in acute hospital wards, patients with pancreatic cancer in inpatient palliative care units received more frequent pain control treatments, underwent fewer aggressive procedures, and incurred lower medical costs. Therefore, inpatient palliative care should be considered a viable option for patients with terminal pancreatic cancer. [ABSTRACT FROM AUTHOR]

Background: The goal of the study was to assess perceived level of satisfaction with end-of-life care, focusing on the last 48 hours of life. Methods: A previously validated instrument was used in a telephone survey with bereaved family members (n=90) of patients who died within an organization in British Columbia. Results: Bereaved family members had many unmet needs for information about the patient's changing condition, the process of dying, how symptoms would be managed and what to do at the time of death. In addition, many bereaved relatives felt that the patient or resident had an unmet need for emotional support and that their own emotional needs were not addressed adequately. The last place of care had the most significant effect on all of these variables, with acute care and residential care having the most unmet needs. Hospice had the fewest unmet needs, followed by the palliative and the intensive care units. Conclusions: We discuss these findings in relation to overall satisfaction with care, focus on individual, ethnocultural and diversity issues, information and decision-making, symptom management and attending to the family. We conclude by offering possible practices address the end-of-life needs of patients and family members. [ABSTRACT FROM AUTHOR]

Background: Many patients with advanced, serious, non-malignant disease belong to the population generally seen on medical wards. However, little research has been carried out on palliative care needs in this group. The aims of this study were to estimate the prevalence of distressing symptoms in patients hospitalised in a Department of Internal Medicine, estimate how many of these patients might be regarded as palliative, and describe their main symptoms. Methods: Cross-sectional (point prevalence) study. All patients hospitalised in the Departments of Internal Medicine, Pulmonary Medicine, and Cardiology were asked to do a symptom assessment by use of the Edmonton Symptom Assessment System (ESAS). Patients were defined as "palliative" if they had an advanced, serious, chronic disease with limited life expectancy and symptom relief as the main goal of treatment. Results: 222 patients were registered in all. ESAS was completed for 160 patients. 79 (35.6%) were defined as palliative and 43 of them completed ESAS. The patients in the palliative group were older than the rest, and reported more dyspnea (70%) and a greater lack of wellbeing (70%). Other symptoms reported by this group were dry mouth (58%), fatigue (56%), depression (41%), anxiety (37%), pain at rest (30%), and pain on movement (42%). Conclusion: More than one third of the patients in a Department of Internal Medicine were defined as palliative, and the majority of the patients in this palliative group reported severe symptoms. There is a need for skills in symptom control on medical wards. [ABSTRACT FROM AUTHOR]

Background: Early provision of palliative care, at least 3-4 months before death, can improve patient quality of life and reduce burdensome treatments and financial costs. However, there is wide variation in the duration of palliative care received before death reported across the research literature. This study aims to determine the duration of time from initiation of palliative care to death for adults receiving palliative care across the international literature.Methods: We conducted a systematic review and meta-analysis that was registered with PROSPERO (CRD42018094718). Six databases were searched for articles published between Jan 1, 2013, and Dec 31, 2018: MEDLINE, Embase, CINAHL, Global Health, Web of Science and The Cochrane Library, as well undertaking citation list searches. Following PRISMA guidelines, articles were screened using inclusion (any study design reporting duration from initiation to death in adults palliative care services) and exclusion (paediatric/non-English language studies, trials influencing the timing of palliative care) criteria. Quality appraisal was completed using Hawker's criteria and the main outcome was the duration of palliative care (median/mean days from initiation to death).Results: One hundred sixty-nine studies from 23 countries were included, involving 11,996,479 patients. Prior to death, the median duration from initiation of palliative care to death was 18.9 days (IQR 0.1), weighted by the number of participants. Significant differences between duration were found by disease type (15 days for cancer vs 6 days for non-cancer conditions), service type (19 days for specialist palliative care unit, 20 days for community/home care, and 6 days for general hospital ward) and development index of countries (18.91 days for very high development vs 34 days for all other levels of development). Forty-three per cent of studies were rated as 'good' quality. Limitations include a preponderance of data from high-income countries, with unclear implications for low- and middle-income countries.Conclusions: Duration of palliative care is much shorter than the 3-4 months of input by a multidisciplinary team necessary in order for the full benefits of palliative care to be realised. Furthermore, the findings highlight inequity in access across patient, service and country characteristics. We welcome more consistent terminology and methodology in the assessment of duration of palliative care from all countries, alongside increased reporting from less-developed settings, to inform benchmarking, service evaluation and quality improvement. [ABSTRACT FROM AUTHOR]

Background: In the absence of extant recommendations, the aim of this study was to formalise support practices used by an interdisciplinary team in a palliative-care unit (PCU) for the relatives of patients in the agonal phase preceding death. The secondary objective was to understand the expectations of relatives during this phase in terms of the support provided by professionals and volunteers. Methods: Thirty-two people took part in this study; all were interviewed through focus groups (FGs). Each FG comprised one category of individuals working in the PCU: nurses, care- assistants, doctors, psychologists, other professionals, palliative-care volunteers, and relatives. Groups were surveyed using an interview guide, and the interviews were recorded and transcribed to enable identification and characterization of all practices. Care practices were classified into four categories: current consensual practices (i.e. performed by all team members), occasional consensual practices, non-consensual practices (performed by one or a few participants), and practices to be developed. Results: In total, 215 practices were mentioned by professionals and palliative-care volunteers: 150 current consensual practices, 48 occasional consensual practices, 1 non-consensual practice, 16 practices yet to be developed, and 29 practices for relatives. Many practices were mentioned by different categories of participants; thus, after cross-checking, the number of practices decreased from 215 to 52. A list of practices deemed desirable by all was drawn up and then validated by the entire interprofessional team. These practices were organised around four themes: providing care and ensuring comfort; communicating, informing, and explaining; interacting; and mobilising interdisciplinary skills. Conclusions: These results underline the importance of the quality of care provided to patients, the attention given to the relatives themselves, and they highlight the importance of the helping relationship. Following this study, which established a list of varied practices aimed at supporting the relatives of patients in agonal phase, it will be important to set up a broader study seeking to establish a consensus on these practices with an interprofessional group of experts from other PCUs using broad surveys and an adapted methodology. Such studies will make it possible to develop training modules for teams working with relatives. [ABSTRACT FROM AUTHOR]

Background: Although rehabilitation is recommended for terminal cancer patients, the specific components and methods of such programs are poorly documented. No studies to date have examined the effectiveness of rehabilitation for terminal cancer patients. This study aims to evaluate the efficacy of a new intervention for rehabilitation therapists, using the Op-reha Guide (Guide to Optimal and Patient-Centred Rehabilitation Practice for Patients in Palliative Care Units [PCUs]) in rehabilitation practice. This guide consists of recommended actions and attitudes for rehabilitation therapists and aims to optimise therapists' actions according to the patient's needs and condition. It shares goals with terminal cancer patients to maintain their activities of daily living (ADL). Methods: This study uses a multicentre, prospective, randomised controlled trial (RCT) design with two parallel groups in PCUs where specialised rehabilitation will be routinely performed for terminal cancer patients by rehabilitation therapists. Participants will be randomised (1:1) to intervention (the Op-reha Guide) and control groups (usual rehabilitation). We will then conduct an observational study in PCUs that do not perform specialised rehabilitation for terminal cancer patients; this will be considered the usual care group, and the efficacy of usual rehabilitation will be quantitatively evaluated. Inclusion criteria are hospitalisation in PCU, European Cooperative Oncology Group Performance Status of 2 or 3, and clinical estimation of life expectancy of 3 weeks or more. Patients with severe symptom burden will be excluded. We hypothesise that the Op-reha Guide will be more effective in maintaining the ADL of terminal cancer patients hospitalised in PCUs than usual rehabilitation. The primary endpoint is defined as the change in (total) modified Barthel Index from baseline to Day 22. Quality of life will be a secondary endpoint. In total, 135 patients will be recruited from 16 Japanese sites between July 2019 and December 2021. Discussion: This will be the first trial to evaluate the efficacy of specialised rehabilitation for terminal cancer patients hospitalised in PCUs, and will contribute to the evidence on the efficacy of implementing rehabilitation for terminal cancer patients. Trial registration: UMIN-CTR, UMIN000037298 R000042525 (date of registration 7 July 2019). [ABSTRACT FROM AUTHOR]

Background: Training in medical ethics aims to educate health care professionals in dealing with daily care ethical issues. To guarantee quality of life and spiritual and emotional support, palliative care professionals have to develop ethical and relational skills. We propose the implementation and evaluation of a specialized training programme in medical ethics dedicated to a hospital-based Palliative Care Unit. Methods: This study is a mixed-method before-after evaluation with data triangulation. Results: The results highlight that participants developed their ethical knowledge, and a deeper ethical awareness. They also felt more confident and motivated to widely apply ethical reflections and reasonings in their daily practice. Conclusion: The participants appreciated the innovative structure of the training, especially regarding the integration of the theoretical-interactive and practical parts. However, they recommended increasing the number of concrete occasions for ethical supervision and practical application of what they learned during the programme. The training programme also has some potential practical implications: the development of advanced ethical skills within a hospital-based PC team may improve the quality of life of the patients and their families. In addition, health care professionals with advanced ethical competencies are able to educate patients and their families towards more active participation in the decision-making process. [ABSTRACT FROM AUTHOR]

Background: The impact and consequences of cancer on the patients and their family caregivers (FCs) are closely intertwined. Caregivers' burdens can be increased due to the patients' unmet needs and unresolved problems. Additionally, the caregivers' unmet needs may adversely affect their own well-being and the patients' health outcomes. This study aims to determine the palliative care needs and the factors associated with these needs in patients with advanced solid cancer and their FCs.Methods: In a cross-sectional survey, 599 patients with advanced solid tumours and 599 FCs were recruited from the largest ambulatory cancer centre and the inpatient ward of the largest hospital in Singapore. Determinants of patients' and FCs' needs were assessed by the Comprehensive Needs Assessment Tool (CNAT) and CNAT-C respectively. Clinical characteristics of patients were obtained from medical records.Results: The FCs (median age 51 years) were younger than the patients (median age 62 years), and were mostly female (62.6%) whereas the gender distribution of patients was quite balanced (49.2% male and 50.8% female). Both patients and FCs had "information" and "practical support" in their top three domains of palliative care needs. The second highest domain of needs was "psychological problems" (16.4 ± 21.5) in patients and "health-care staff" (23.4 ± 26.5) in FCs. The item that had the highest need score in "information" domain for both patients and FCs was "financial support for patients, either from government and/ or private organizations". Under clinical setting, the inpatients (19.2 ± 16.4) and their FCs (26.0 ± 19.0) tend to have higher needs than the outpatients (10.5 ± 12.1) and their FCs (14.7 ± 14.3). In terms of palliative care, higher total CNAT score was observed in both patients (16.6 ± 12.9 versus 13.3 ± 15.2) and their FCs (25.1 ± 18.6 versus 17.7 ± 16.7) who received palliative care. In terms of patients' KPS scores, patients with lower KPS scores tend to have higher needs.Conclusion: Overall, the findings confirm that patients with advanced cancer and their FCs have many palliative care needs irrespective of their clinical settings. Initiatives and interventions for the development of a comprehensive support system for both patients with advanced cancer and their FCs are warranted and can be derived from these findings. [ABSTRACT FROM AUTHOR]

Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals. Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate). Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support. Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative's priorities for EoLC in acute hospitals and can advance care providers', policy makers' and educationalists' priorities for service improvement. [ABSTRACT FROM AUTHOR]

Background: End-of-life (EOL) conversations in hospital should serve to give patients the opportunity to consider future treatment options and help them clarify their values and wishes before it becomes relevant to make decisions about treatment. However, it is known that EOL conversations are not performed systematically in hospital. This may mean that patients and their relatives do not address EOL issues. There is a lack of knowledge about who is responsible for conducting these conversations, and when and under what circumstances they are conducted. The aim of this study was to explore the existing practices regarding EOL conversations in an acute care hospital setting. Methods: The design was Interpretive Description and the methods for the data collection included: 1. Participatory observational studies in a pulmonary medical and surgical ward (a total of 66 h); 2. Four focus group interviews with healthcare professionals (n = 14) from the wards. The analysis followed Spradley's ethnosemantic analysis. Results: The results revealed three cultural categories related to: 1. The physical and organizational setting; 2. The timing of EOL conversations and competencies and roles in addressing EOL issues and 3. Topics addressed in EOL conversations. The EOL conversations were part of daily clinical practice, but there was a lack of competencies, roles were unclear and the physical and organizational environment was not conducive to the conversations. The topics of the EOL conversations revolved around a "here-and-now" status of the patient's disease progression and decisions about the level of treatment. To a lesser extent, the conversations included the patient's and relatives' thoughts and wishes concerning EOL, which allowed long-term care planning. Conclusion: This study demonstrates that there are several barriers to talking about EOL in an acute care hospital setting, and future strategies must address an overall approach. In order to provide patients and their relatives with better opportunities to express their EOL wishes, there is a need for clearer roles and guidelines in an interdisciplinary approach to EOL conversations, alongside improved staff competencies and changes to the organizational and physical environment. [ABSTRACT FROM AUTHOR]

Background: The implementation of standardised, valid and reliable measurements in palliative care is subject to practical and methodological challenges. One aspect of ongoing discussion is the value of systematic proxy-based assessment of symptom burden in palliative care. In 2011, an expert-developed proxy-based instrument for the assessment of symptom burden in palliative patients, the Palliative Symptom Burden Score (PSBS), was implemented at the Specialised Palliative Care Unit of the University Medical Centre in Dusseldorf, Germany. The present study investigated its feasibility, acceptance and psychometric properties. Methods: The PSBS was rated by nursing staff three times a day over 5 years (N = 820 patients). Feasibility and nurses' acceptance of PSBS were analysed. Structural validity was investigated by principal component analysis. Construct validity was examined via cross-validation with the Hospice and Palliative Care Evaluation checklist. Discriminative validity of the PSBS was analysed by means of Kruskal-Wallis test of patients' performance score. Reliability of the PSBS was evaluated by internal consistency analysis, test-retest and split-half-reliability. Inter-rater reliability was investigated by observer agreement of nurses' ratings of symptom burden within a day. Sensitivity to change was analysed by Wilcoxon test with repeated measures of the PSBS before and after palliative complex treatment. Results: A high degree of acceptance and the feasibility of a high-frequency proxy-based symptom burden assessment approach were demonstrated. There were low rates of missing values and no indications of the adoption of prior ratings. PSBS in its present form demonstrates good structural and construct validity (rs =.27–.79, p's <.001) and high sensitivity to changes in symptom burden (p's <.01, except sweating), but unsatisfactory reliability (α =.41–.67; test-retest: rs =.30–.88; p's <.001; split-half: rs =.69; p <.001; inter-rater: n.s.). Conclusions: The study presents a framework for the post hoc validation of an already existing documentation tool in palliative care. This study supports the notion that PSBS might not be reflective of an overall construct and will therefore require further development and critical comparison to other already established symptom burden instruments in palliative care. [ABSTRACT FROM AUTHOR]

Background: Due to increasing life expectancy, more and more older people are suffering from dementia and comorbidities. To date, little information is available on place of death for dementia patients in Germany. In addition, the association of place of death and comorbidities is unknown. Methods: A population-based cross-sectional survey was conducted in Westphalia–Lippe (Germany), based on the analysis of death certificates from 2011. Individuals with dementia ≥ 65 years were identified using the documented cause of death. In this context, all mentioned causes of death were included. In addition, ten selected comorbidities were also analyzed. The results were presented descriptively. Using multivariate logistic regression, place of death was analyzed for any association with comorbidities. Results: A total of 10,364 death certificates were analyzed. Dementia was recorded in 1646 cases (15.9%; mean age 86.3 ± 6.9 years; 67.3% women). On average, 1.5 ± 1.0 selected comorbidities were present. Places of death were distributed as follows: home (19.9%), hospital (28.7%), palliative care unit (0.4%), nursing home (49.5%), hospice (0.9%), no details (0.7%). The death certificates documented cardiac failure in 43.6% of cases, pneumonia in 25.2%, and malignant tumour in 13.4%. An increased likelihood of dying in hospital compared to home or nursing home, respectively, was found for the following comorbidities (OR [95%-CI]): pneumonia (2.96 [2.01–4.35], p = 0.001); (2.38 [1.75–3.25], p = 0.001); renal failure (1.93 [1.26–2.97], p = 0.003); (1.65 [1.18–2.32], p = 0.003); and sepsis (13.73 [4.88–38.63], p = 0.001); (7.34 [4.21–12.78], p = 0.001). Conclusion: The most common place of death in patients with dementia is the retirement or nursing home, followed by hospital and home. Specific comorbidities, such as pneumonia or sepsis, correlated with an increased probability of dying in hospital. [ABSTRACT FROM AUTHOR]