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Background: Blogging can help to maximise the impact of one's work in academia and beyond by making research findings accessible for multiple knowledge users, such as healthcare professionals and the public, as well as other researchers. As part of the knowledge exchange and dissemination activities of the Model for Dementia Palliative Care Project, this study explored stakeholders' views of blogs as a means to translate research findings. Methods: A web-based survey was developed, piloted, and revised. It was distributed electronically via key dementia and palliative care organisations websites, newsletters, social media platforms, and within the staff mailing lists of five Universities in Ireland. Data were analysed using descriptive statistics and content analysis. Results: Complete responses were received from 128 participants. The majority of respondents were healthcare researchers (n = 53), followed by healthcare providers (n = 46). The preferred methods of reviewing research findings were scientific papers, websites and news articles. Respondents read healthcare blogs "sometimes" (39.1%), with < 19% reading them "often" or "very often". Receiving an email notification might increase the likelihood of reading a new blog post for 83% of respondents. Barriers to engaging with blogs included lack of time, preference for other media, lack of awareness regarding available blogs, and concerns about the credibility and source of information. An appropriate length and the author of the blog were key features that encouraged engagement with a blog. Conclusions: Despite respondents choosing a scientific paper as their preferred method to consume research findings, many indicated an openness to reading blogs on their area of interest. Creating concise, relevant, and credible blogs, and suitably promoting them, could increase the impact and reach of healthcare research, such as in the emerging field of dementia palliative care, and thus promote translation of research findings into practice. [ABSTRACT FROM AUTHOR]

Background: Research has shown that routinely assessed, patient-reported outcome measures (PROMs) have positive effects in patients with advanced oncologic diseases. However, the transferability of these results to specialist palliative care is uncertain because patients are more impaired and staff doubt the feasibility and benefits. The aim of this study is to evaluate the feasibility of patient self-assessment of PROMs, their use by staff and the benefits in palliative care wards. Method: A multicentre observational study was conducted in the context of the implementation of the Integrated Patient Outcome Scale (IPOS) in three specialist palliative care wards at university hospitals in Germany. All admitted patients who screened positive regarding their ability to complete questionnaires were asked to participate and complete the IPOS on paper weekly, with assistance if necessary. Feasibility of questionnaire completion (e.g. proportion of patients able to complete them), use (e.g. involvement of different professional groups) and benefit (e.g. unexpected information in IPOS as rated by treating physicians) were assessed. Staff members' opinion was obtained in a written, anonymous evaluation survey, patients' opinion in a short written evaluation. Results: A total of 557 patients were screened for eligibility, 235 were assessed as able to complete the IPOS (42.2%) and 137 participated in the study (24.6%). A majority needed support in completing the IPOS; 40 staff members and 73 patients completed the evaluation. Unexpected information was marked by physicians in 95 of the 137 patient questionnaires (69.3%). The staff differed in their opinions on the question of whether this also improved treatment. A majority of 32 staff members (80.0%) were in favour of continuing the use of IPOS (4 against continuation, 4 no answer); 43 (58.9%) patients rated their overall experience of IPOS use as 'positive', 29 (39.7%) as 'neutral' and 1 (1.4%) as 'negative'. Conclusions: While most staff wished to continue using IPOS, it was a challenge to integrate the effort to support the completion of IPOS into daily practice. Digital implementation was not successful, despite various attempts. To explore the effects on care and patient outcomes, multicentre cluster-randomised trials could be employed. Trial registration: German Clinical Trials Register DRKS-ID: DRKS00016681 (24/04/2019). [ABSTRACT FROM AUTHOR]

Background: Withholding or withdrawing life-sustaining treatment in end-of-life patients is a challenging ethical issue faced by physicians. Understanding physicians' experiences and factors influencing their decisions can lead to improvement in end-of-life care. Objectives: To investigate the experiences of Thai physicians when making decisions regarding the withholding or withdrawal of life-sustaining treatments in end-of-life situations. Additionally, the study aims to assess the consensus among physicians regarding the factors that influence these decisions and to explore the influence of families or surrogates on the decision-making process of physicians, utilizing case-based surveys. Methods: A web-based survey was conducted among physicians practicing in Chiang Mai University Hospital (June - October 2022). Results: Among 251 physicians (response rate 38.3%), most of the respondents (60.6%) reported that they experienced withholding or withdrawal treatment in end-of-life patients. Factors that influence their decision-making include patient's preferences (100%), prognosis (93.4%), patients' quality of life (92.8%), treatment burden (89.5%), and families' request (87.5%). For a chronic disease with comatose condition, the majority of the physicians (47%) chose to continue treatments, including cardiopulmonary resuscitation (CPR). In contrast, only 2 physicians (0.8%) would do everything, in cases when families or surrogates insisted on stopping the treatment. This increased to 78.1% if the families insisted on continuing treatment. Conclusion: Withholding and withdrawal of life-sustaining treatments are common in Thailand. The key factors influencing their decision-making process included patient's preferences and medical conditions and families' requests. Effective communication and early engagement in advanced care planning between physicians, patients, and families empower them to align treatment choices with personal values. [ABSTRACT FROM AUTHOR]

Background: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses. Methods: We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia. Results: Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare. Conclusions: This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings. [ABSTRACT FROM AUTHOR]

Introduction: Terminal illness is an irreversible illness that, without life-sustaining procedures, usually results in death or permanent disability from which recovery is unlikely. When involved, family caregivers are believed to improve health outcomes, such as reduced hospitalization, and establishing a patient's initial access to professional treatment services. However, caring for a patient with a terminal illness is viewed as one of the most difficult aspects of providing care. This study aimed to identify the challenges, and coping strategies developed by family caregivers to cope with the care of the terminally ill person. Methods: An exploratory descriptive qualitative approach was used. Twenty (20) family caregivers voluntarily participated in the study from the Korle-Bu Teaching Hospital. Semi-structured interviews were conducted with the participants. The transcribed interviews were then analysed using thematic analysis. Results: From the analysis, three main themes emerged: challenges, coping strategies, and social support. These themes encompassed sixteen subthemes including financial burden, bad health conditions, faith and prayer, and support from health professionals. From the study, both male and female family caregivers narrated that providing care for sick relatives undergoing terminal disease is characterized as a daily duty demanding one's time and fraught with emotional strain. In addition, even though it was a difficult job, family members who provided care for ailing relatives never gave up, citing responsibility, the importance of family, and religious beliefs as the primary motivations for doing so. Conclusion: The difficulties and demands of family caregiving roles for terminally ill relatives are complex and multifactorial. The findings call for multidisciplinary professional attention for family caregivers and policies that will support their lives holistically. [ABSTRACT FROM AUTHOR]

Background: Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. Aims: To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. Methods: This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. Results: In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family's burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. Conclusion: The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults. [ABSTRACT FROM AUTHOR]

Background: The need for primary care physicians to be heavily involved in the provision of palliative care is growing. International agencies and practice standards advocate for early palliative care and the use of specialized palliative care services for patients with life-threatening illnesses. This study was conducted to investigate physicians' referral practices and perceived barriers to timely referral at the Korle Bu Teaching Hospital. Methods: A cross-sectional study design was employed using a convenience sampling technique to recruit 153 physicians for the study. Data on socio-demography, referral practices, timing and perceived barriers were collected using a structured questionnaire. Binary Logistic regression using crude and adjusted odds was performed to determine the factors associated with late referral. Significance was set at p < 0.05. Results: The prevalence of late referral was reported to be 68.0%. There were poor referral practices among physicians to palliative care services, and the major barriers to late referral were attributed to the perception that referring to a palliative care specialist means that the physician has abandoned his patient and family members' decisions and physicians' personnel choices or opinions on palliative care. Conclusion: The healthcare system needs tailored interventions targeted at improving physicians' knowledge and communication strategies, as well as tackling systemic deficiencies to facilitate early and appropriate palliative care referrals. It is recommended that educational programs be implemented, palliative care training be integrated into medical curricula and culturally sensitive approaches be developed to address misconceptions surrounding end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Clinical practice guidelines emphasize shared decision-making for kidney replacement treatment, yet little is known about the influence of cultural differences on that process. We undertook a retrospective chart review to explore the process and timing of dialysis decision making and initiation in Chinese American patients to provide quality kidney care for this population. Design: Participants received outpatient care at Tufts Medical Center and dialysis at Dialysis Clinic, Inc. Boston or Somerville, MA from 2001–2021. Clinic chart review sourced demographic, clinical, and end-of-life care information from 180 participants (82 Chinese American, 98 other) from stage 4 chronic kidney disease (CKD) and dialysis initiation. Results: Chinese American participants were older (mean 70 vs. 59, p < 0.0001), less likely to speak English (12% vs. 87%, p < 0.0001), and used interpreter services more (80% vs. 11%, p < 0.0001). Chinese American participants had more visits (median 14 vs. 10, p = 0.005); were more often accompanied by family members (75% vs. 40%, p < 0.001); and had significantly lower rates of healthcare proxy documentation (35% vs. 55%, p = 0.006). There was no statistical difference in months between first CKD 4 visit and first dialysis. Both groups started dialysis at the same average eGFR and with similar rates of permanent dialysis access. Chinese American participants had significantly lower serum albumin at dialysis initiation (mean 3.3 g/dL vs 3.7 g/dL, p = 0.0003). Documentation reflected a low number of conversations about non-dialytic care, end-of-life planning, or palliative care in both groups across all visits. Conclusion: The time between CKD 4 and dialysis initiation was the same in both groups, suggesting a similar overall outcome of care. Chart documentation suggests that Chinese American participants had a significantly higher number of visits with nephrologists where discussion about dialysis was noted and were more likely to have a family member present at the visit. Fewer Chinese American participants completed healthcare proxies. Among all study participants, healthcare proxy, code status, and palliative care discussions were reported less frequently than expected. These findings highlight opportunities for collaboration between palliative care clinicians and nephrologists. [ABSTRACT FROM AUTHOR]

Background: Pneumonia in cancer patients is often problematic in order to decide whether to admit and administer antibiotics or pursue a comfort care pathway that may avoid in-hospital death. We aimed to identify factors which are easily assessed at admission in Thailand's healthcare context that could serve as prognostic factors for in-hospital death. Methods: Regression analysis was utilized to identify the prognostic factors from clinical factors collected at admission. The primary outcome was in-hospital death. Data was collected from the electronic medical records of Chiang Mai University Hospital, Thailand, from 2016 to 2017. Data on adult cancer patients admitted due to pneumonia were reviewed. Results: In total, 245 patients were included, and 146 (59.6%) were male. The median age of the patients was 66 years (IQR: 57–75). A total of 72 (29.4%) patients died during admission. From multivariate logistic regression, prognostic factors for in-hospital death included: Palliative Performance Scale (PPS) ≤ 30 (OR: 8.47, 95% CI: 3.47–20.66), Palliative Performance Scale 40–50% (OR: 2.79, 95% CI: 1.34–5.81), percentage of lymphocytes ≤ 8.0% (OR: 2.10, 95% CI: 1.08–4.08), and pulse oximetry ≤ 90% (OR: 2.01, 95% CI: 1.04–3.87). Conclusion: The in-hospital death rate of cancer patients admitted with pneumonia was approximately 30%. The PPS of 10–30%, PPS of 40–50%, percentage of lymphocytes ≤ 8%, and oxygen saturation < 90% could serve as prognostic factors for in-hospital death. Further prospective studies are needed to investigate the usefulness of these factors. [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-stage renal disease (ESRD) is a major chronic illness worldwide, and Taiwan reports one of the highest incidence rates of ESRD with 529 cases per million population (pmp). A number of patients with ESRD patients might require lifelong hemodialysis (HD) or peritoneal dialyses (PD). Due to the progression of dialysis, patients are likely to experience other chronic comorbidities, anxiety and depression, frequent hospitalizations, and higher rates of mortality compared to patients with other types of chronic illnesses. As a result, dialysis patients are prone to experience advance care planning (ACP) needs, such as whether they withdraw from receiving dialysis while approaching their end-of-life (EOL). Yet, existing studies have shown that dialysis patients seldom receive timely consultation regarding ACP and there are limited studies examining ACP amongst Taiwan HD patients. Purpose: The purpose of this study was to examine ACP awareness, contemplation, self-efficacy and readiness; and factors influencing ACP readiness. Design: This cross-sectional descriptive study with convenience sampling was conducted in the out-patient HD unit at a regional teaching hospital in southern Taiwan. A total of 143 ESRD patients undergoing HD treatments were recruited. A 55-item ACP engagement survey containing the subscales of awareness, contemplation, self-efficacy, and readiness was employed. The data were analyzed with t-tests, one-way ANOVAs, Pearson's correlations and multiple regressions. Results: The results of our investigation revealed that approximately half of the participants (n = 67, 46.9%) were not informed of ACP. Although they reported considering their EOL, medical decisions and desired care, they demonstrated significantly low self-efficacy in discussing ACP (t= -5.272, p < 0.001). HD duration influenced all four ACP subscales; religious beliefs significantly influenced ACP-self-efficacy and readiness; and marital status, education, and primary decision-maker status significantly influenced ACP-readiness. The predictors of ACP-readiness were high self-efficacy and being the primary decision-maker (Adjusted R2 61%). Conclusion: Most of the HD patients in this study had low ACP-awareness, contemplation, self-efficacy, and readiness, and most had not completed any ACP-related advance directives (AD). Healthcare professionals should proactively provide HD patients with ACP-related information and answer patients' and medical decision-makers' questions in a timely manner, thereby improving the quality of EOL care. [ABSTRACT FROM AUTHOR]

Background: Using delirium clinical guidelines may align interprofessional clinical practice and improve the care of delirious patients and their families. The aim of this project was to adapt, implement and evaluate an interprofessional modular delirium clinical practice guideline for an inpatient palliative care unit. Methods: The setting was a 31-bed adult inpatient palliative care unit within a university-affiliated teaching hospital. Participants for the evaluation were interprofessional team members. Using integration of guideline adaptation and an education initiative, an interprofessional guideline adaptation group developed a face-to-face 'starter kit' module and four online self-learning modules. The mixed methods evaluation comprised pre-and post-implementation review of electronic patient records, an online survey, and analysis of focus groups/ interviews using an iterative, inductive thematic analysis approach. Results: Guideline implementation took 12 months. All palliative care unit staff attended a 'starter kit' session. Overall completion rate of the four e-Learning modules was 80.4%. After guideline implementation, nursing documentation of non-pharmacological interventions occurring before medication administration was observed. There was 60% less scheduled antipsychotic use and an increase in 'as needed' midazolam use. The online survey response rate was 32% (25/77). Most participants viewed the guideline's implementation favourably. Six key themes emerged from the qualitative analysis of interviews and focus groups with ten participants: prior delirium knowledge or experiences, challenges of facilitating change, impacts on practice, collaborative effort of change, importance of standardized guidelines, and utility of guideline elements. Conclusions: Guideline implementation warrants concerted effort, time, and management support. Interprofessional team support facilitates the modular approach of guideline adaptation and implementation, leading to a change in clinical practice. [ABSTRACT FROM AUTHOR]

Background: In Ghana, prostate cancer is more prevalent than all other cancers, with a mortality rate of 75% partly due to late presentation to the health care facilities. Limited health services provision across the country and shortages of skilled nurses place a significant demand on family caregivers who are often ill-equipped for the caring role, resulting in many challenges. As they are expected to provide complex care at home with little resources, information, and support, the healthcare system rarely addresses the challenging needs of these family caregivers. This study explored the challenges encountered by family caregivers of people with prostate cancer. Methods: We conducted interviews using a descriptive phenomenological approach. Twelve family caregivers of prostate cancer patients were selected through a purposive sampling technique at the Cape Coast Teaching Hospital. All interviews were recorded, transcribed, and analysed using Colaizzi's (1978) data analysis approach. Results: Three main themes were identified as critical challenges: education and training needs, resources and caregiver-nurse relationship issues. Under the three main themes emerged seven sub-themes that collectively hindered the family caregiver's ability to meet the care demands. Sub-themes that emerged were; lack of preparedness towards the caring role, lack of knowledge about condition/ treatment, misconception about the condition, lack of accommodation facilities, financial constraints, poor communication, and poor staff attitude. Conclusion: Caregiving is associated with significant challenges that hinder the family caregiver's ability to care for the patient effectively, further diminishing the caregiver's quality of life and patient care. Therefore, healthcare professionals, especially nurses, should consider these challenges family caregivers face and take measures to obviate them through education, preparation and support. [ABSTRACT FROM AUTHOR]

Background: Internal medicine residents are responsible for providing much of the direct care for palliative and terminally ill patients in teaching hospitals in the United Arab Emirates (UAE). To date, little systematic information is available on the prevalence of palliative care (PC) programs or faculty in UAE academic hospitals, or on the nature of PC education in internal medicine residency programs in the country. Methods: Semi-structured interviews were conducted with program directors of all 7 internal medicine residency programs in the UAE. Qualitative content analysis was conducted to identify recurring themes. Results: All program directors agreed that PC knowledge and skills are an essential component of training for internal medicine residents, but have had variable success in implementing the components. Three themes emerged, namely lack of structured PC training, perceptions of resident preparedness, and barriers to implementing a PC curriculum. Conclusion: Internal medicine residency programs in the UAE currently lack structured, mandatory PC curricula and have limited opportunities for formal teaching and assessment of PC knowledge and skills. The planned development of comprehensive oncology and palliative care centers and ongoing curricular reform in teaching hospitals in the country will provide important opportunities to train a cadre of competent health professionals to provide high quality palliative and end-of-life care to UAE patients and their families. [ABSTRACT FROM AUTHOR]

Background: Uncertainty has been associated with distress and poorer quality of life in patients with advanced cancer. Prior studies have focused on prognostic uncertainty; little is known about other types of uncertainty that patients and family members experience when discussing goals of care. Understanding the types of uncertainty expressed and differences between Black and White patients can inform the development of uncertainty management interventions. Methods: This study sought to characterize the types of uncertainty expressed by Black and White patients and family members within the context of information needs during inpatient goals-of-care discussions. We performed a secondary analysis of transcripts from 62 recorded goals-of-care discussions that occurred between 2012 and 2014 at an urban, academic medical center in the United States. We applied an adapted taxonomy of uncertainty to data coded as describing information needs and used an inductive qualitative analysis method to analyze the discussions. We report the types of uncertainty expressed in these discussions. Results: Fifty discussions included patient or family expressions of information needs. Of these, 40 discussions (n=16 Black and n=24 White) included statements of uncertainty. Black and White patients and families most frequently expressed uncertainty related to processes and structures of care (system-centered uncertainty) and to treatment (scientific uncertainty). Statements of prognostic uncertainty focused on quantitative information among Whites and on qualitative information and expectations for the future among Blacks. Conclusions: Black and White patients and families frequently expressed system-centered uncertainty, suggesting this may be an important target for intervention. Addressing other sources of uncertainty, such as prognostic uncertainty, may need more tailored approaches. [ABSTRACT FROM AUTHOR]

Background: Nurses must have spiritual competence to provide holistic patient care. Therefore, the designed instrument to assess nurses' competence could be a practical guide for health care professionals. This study aimed to evaluate the validity and reliability of the spiritual care competency scale (SCCS) for oncology nurses in Taiwan. Methods: This study used a convenience sample from a regional teaching hospital in Taiwan from November 2017 to February 2019, who were asked to complete the SCCS. We employed scale-content validity index (S-CVI). Exploratory Factor Analysis (EFA) was also used to evaluate the structural factor of SCCS. Confirmatory Factor Analysis (CFA) verified the construct validity of SCCS scale for oncology nurses in Taiwan. Test–retest reliability were also measured in this study at 2-week interval. Results: The average S-CVI of SCCS was 0.96. The EFA produced four factors of 27 items, such as professionalization, improving the quality of spiritual care, personal support, patient counseling and referral, attitude towards patient spirituality and communication, assessment, implementation providing and evaluation of spiritual care. Fitting the 27 items yielded an acceptable model fit; X2/df = 2.41, RMSEA = 0.08, GFI = 0.80, AGFI = 0.80, CFI = 0.92, IFI = 0.92, NFI = 0.90, RFI = 0.90, TLI = 0.91, SRMR = 0.06. Cronbach's alpha values were between 0.93 and 0.95, and the total Cronbach's alpha was 0.96. The intraclass correlation coefficient (ICC) scores were between 0.43 and 0.88. Conclusions: The result of this study demonstrated satisfactory validity and reliability for the SCCS in the nursing field in Taiwan. Implications for practice in this study serves as a reference for effectively evaluating nursing competency in spiritual care. [ABSTRACT FROM AUTHOR]

Background: The availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania. Methods: Four mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding. Results: For many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation. Conclusion: Significant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff. [ABSTRACT FROM AUTHOR]

Background: High quality serious illness communication requires good understanding of patients' values and beliefs for their treatment at end of life. Natural Language Processing (NLP) offers a reliable and scalable method for measuring and analyzing value- and belief-related features of conversations in the natural clinical setting. We use a validated NLP corpus and a series of statistical analyses to capture and explain conversation features that characterize the complex domain of moral values and beliefs. The objective of this study was to examine the frequency, distribution and clustering of morality lexicon expressed by patients during palliative care consultation using the Moral Foundations NLP Dictionary. Methods: We used text data from 231 audio-recorded and transcribed inpatient PC consultations and data from baseline and follow-up patient questionnaires at two large academic medical centers in the United States. With these data, we identified different moral expressions in patients using text mining techniques. We used latent class analysis to explore if there were qualitatively different underlying patterns in the PC patient population. We used Poisson regressions to analyze if individual patient characteristics, EOL preferences, religion and spiritual beliefs were associated with use of moral terminology. Results: We found two latent classes: a class in which patients did not use many expressions of morality in their PC consultations and one in which patients did. Age, race (white), education, spiritual needs, and whether a patient was affiliated with Christianity or another religion were all associated with membership of the first class. Gender, financial security and preference for longevity-focused over comfort focused treatment near EOL did not affect class membership. Conclusions: This study is among the first to use text data from a real-world situation to extract information regarding individual foundations of morality. It is the first to test empirically if individual moral expressions are associated with individual characteristics, attitudes and emotions. [ABSTRACT FROM AUTHOR]

Background: Patient participation is a key foundation of advance care planning (ACP). However, a patient himself/herself may be left out from sensitive conversations such as end-of-life (EOL) care discussions. The objectives of this study were to investigate patients' participation rate in the discussion of Cardiopulmonary Resuscitation (CPR) / Do-Not-Attempt-Resuscitation (DNAR) order, and in the discussion that the patient is at his/her EOL stage (EOL disclosure), and to explore their associated factors. Methods: This is a retrospective chart review study. The participants were all the patients who were hospitalized and died in a university-affiliated teaching hospital (tertiary medical facility) in central Tokyo, Japan during the period from April 2018 to March 2019. The following patients were excluded: (1) cardiopulmonary arrest on arrival; (2) stillbirth; (3) under 18 years old at the time of death; and (4) refusal by their bereaved family. Presence or absence of CPR/DNAR discussion and EOL disclosure, patients' involvement in those discussions, and their associated factors were investigated. Results: CPR/DNAR discussions were observed in 336 out of the 358 patients (93.9%). However, 224 of these discussions were carried out without a patient (patient participation rate 33.3%). Male gender (odds ratio (OR) = 2.37 [95% confidence interval (CI) 1.32–4.25]), living alone (OR = 2.51 [1.34–4.71]), and 1 year or more from the date of diagnosis (OR = 1.78 [1.03–3.10]) were associated with higher patient's participation in CPR/DNAR discussions. The EOL disclosure was observed in 341 out of the 358 patients (95.3%). However, 170 of the discussions were carried out without the patient (patient participation rate 50.1%). Patients who died of cancer (OR = 2.41[1.45–4.03]) and patients without mental illness (OR=2.41 [1.11–5.25]) were more likely to participate in EOL disclosure. Conclusions: In this clinical sample, only up to half of the patients participated in CPR/DNAR discussions and EOL disclosure. Female, living with family, a shorter period from the diagnosis, non-cancer, and mental illness presence are risk factors for lack of patients' participation in CPR/DNAR or EOL discussions. Further attempts to facilitate patients' participation, based on their preference, are warranted. [ABSTRACT FROM AUTHOR]

Background: General Practitioners (GPs) face challenges when providing palliative care, including an ageing, multimorbid population, and falling GP numbers. A 'public health palliative care' approach, defined as "working with communities to improve people's experience of death, dying and bereavement", is gaining momentum. 'Compassionate communities' is one example, with a focus on linking professional health carers with supportive community networks. Primary care is central to the approach, which has been incorporated into United Kingdom GP palliative care guidance. No research to date, however, has investigated GP perspectives of these approaches. Our aim, therefore, was to explore GP perceptions of a public health approach to palliative care, and compassionate communities. Methods: GPs working in the United Kingdom were recruited through university teaching and research networks using snowball sampling. Purposive sampling ensured wide representation of gender, level of experience and practice populations. Semi-structured, digitally audio-recorded interviews were conducted with nine GPs. Interviews were transcribed verbatim, and thematic analysis was undertaken, informed by a qualitative descriptive methodology. Interviews continued until data saturation was reached. Results: Most participants were unfamiliar with the term 'compassionate communities', but recognised examples within their practice. Three major themes with seven subthemes were identified: 1) Perceived potential of compassionate communities, including: 'maximising use of existing community services'; 'influencing health outside of healthcare'; and 'combatting taboo', 2) Perceived challenges of compassionate communities, including: 'patient safety'; 'limited capacity of the community'; 'limited capacity of general practice', and 'applicability of public health to palliative care', and 3) The role of the GP in compassionate communities. Conclusions: GPs recognised the importance of the wider community in caring for palliative care patients, however most were unfamiliar with the compassionate community approach. Participants held differing views regarding the application of the model, and the position of general practice within this. Further research into the approach's practical implementation, and exploring the views of other key stakeholders, would help establish the feasibility of compassionate communities in practice, and guide its future application. [ABSTRACT FROM AUTHOR]

Background: Lung cancer has a high impact on both patients and relatives due to the high disease burden and short life expectancy. Previous studies looked into treatment goals patients have before starting a systemic treatment. However, studies on relatives' perceptions of treatment at the end of life are scarce. Therefore, we studied the perspectives of relatives in hindsight on the achievement of treatment goals and the choice to start treatment for metastatic lung cancer of their loved one. Methods: We conducted a structured telephone interview study in six hospitals across the Netherlands, one academic and five non-academic hospitals, between February 2017 and November 2019. We included 118 relatives of deceased patients diagnosed with metastatic lung cancer who started a systemic treatment as part of usual care (chemotherapy, immunotherapy or targeted therapy with tyrosine kinase inhibitors (TKIs) and who completed a questionnaire on their treatment goals before the start of treatment and when treatment was finished. We asked the relatives about the achievement of patients' treatment goals and relatives' satisfaction with the choice to start treatment. This study is part of a larger study in which 266 patients with metastatic lung cancer participated who started a systemic treatment and reported their treatment goals before start of the treatment and the achievement of these goals after the treatment. Results: Relatives reported the goals 'quality of life', 'decrease tumour size' and 'life prolongation' as achieved in 21, 37 and 41% respectively. The majority of the relatives (78%) were satisfied with the choice to start a treatment and even when none of the goals were achieved, 70% of the relatives were satisfied. About 50% of relatives who were satisfied with the patients' choice mentioned negative aspects of the treatment choice, such as the treatment did not work, there were side effects or it would not have been the relatives' choice. Whereas, 80% of relatives who were not satisfied mentioned negative aspects of the treatment choice. The most mentioned positive aspects were that they tried everything and that it was the patient's choice. Conclusion: The majority of relatives reported patients' treatment goals as not achieved. However, relatives were predominantly satisfied about the treatment choice. Satisfaction does not provide a full picture of the experience with the treatment decision considering that the majority of relatives mentioned (also) negative aspects of this decision. At the time of making the treatment decision it is important to manage expectations about the chance of success and the possible side effects of the treatment. [ABSTRACT FROM AUTHOR]

Background: The Palliative Care Consult Service (PCCS) programme was among the first initiations in Hungary to provide palliative care for patients admitted to hospital. The PCCS team provides palliative care for mainly cancer patients and their family members and manages the patient pathway after being discharged from the hospital. The service started in 2014 with 300–400 patient visits per year. The aim of this study is to give a comprehensive overview of the PCCS programme guided by a conceptual framework designed by SELFIE ("Sustainable intEgrated chronic care modeLs for multi-morbidity: delivery, FInancing, and performancE"), a Horizon2020 funded EU project and to identify the facilitators and barriers to its wider implementation. Methods: PCCS has been selected by the SELFIE consortium for in-depth evaluation as one of the Hungarian integrated care models for persons with multi-morbidity. The qualitative analysis of the PCCS programme was based on available documents of the care provider and interviews with different stakeholders related to the programme. Results: The integrated, multidisciplinary and patient-centred approach was well-received among the patients, family members and clinical departments, as verified by the increasing number of requests for consultations. As a result of the patient pathway management across providers (e.g. from inpatient care to homecare) a higher level of coordination could be achieved in the continuity of care for seriously-ill patients. The regulatory framework has only partially been established, policies to integrate care across organizations and sectors and adequate financial mechanism to support the enhancement and sustainability of the PCCS are still missing. Conclusions: The service integration of palliative care could be implemented successfully in an academic hospital in Hungary. However, the continuation and enhancement of the programme will require further evidence on the performance of the integrated model of palliative care and a more systematic approach particularly regarding the evaluation, financing and implementation process. [ABSTRACT FROM AUTHOR]

Background: Early palliative care (EPC) is recommended but rarely integrated with advanced heart failure (HF) care. We engaged patients and family caregivers to study the feasibility and site differences in a two-site EPC trial, ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers). Methods: We conducted an EPC feasibility study (4/1/14-8/31/15) for patients with NYHA Class III/IV HF and their caregivers in academic medical centers in the northeast and southeast U.S. The EPC intervention comprised: 1) an in-person outpatient palliative care consultation; and 2) telephonic nurse coach sessions and monthly calls. We collected patient- and caregiver-reported outcomes of quality of life (QOL), symptom, health, anxiety, and depression at baseline, 12- and 24-weeks. We used linear mixed-models to assess baseline to week 24 longitudinal changes. Results: We enrolled 61 patients and 48 caregivers; between-site demographic differences included age, race, religion, marital, and work status. Most patients (69%) and caregivers (79%) completed all intervention sessions; however, we noted large between-site differences in measurement completion (38% southeast vs. 72% northeast). Patients experienced moderate effect size improvements in QOL, symptoms, physical, and mental health; caregivers experienced moderate effect size improvements in QOL, depression, mental health, and burden. Small-to-moderate effect size improvements were noted in patients- hospital and ICU days and emergency visits. Conclusions: Between-site demographic, attrition, and participant-reported outcomes highlight the importance of intervention pilot-testing in culturally diverse populations. Observations from this pilot feasibility trial allowed us to refine the methodology of an in-progress, full-scale randomized clinical efficacy trial. [ABSTRACT FROM AUTHOR]

Background: An advance directive (AD) is a written or verbal document that legally stipulates a person's health care preference while they are competent to make decisions for themselves and is used to guide decisions on life-sustaining treatment in the event that they become incapacitated. AD can take the form of a living will, a limitation of care document, a do-not-resuscitate order, or an appointment of a surrogate by durable power of attorney. The completion rate of AD varies from region to region, and it is influenced by multiple factors. The objectives of this study were to determine the proportion of terminally ill patients with AD and to identify the factors that influence the completion of AD amongst terminally ill patients at a tertiary hospital in Kenya. Methods: The study was a retrospective survey. All available records of terminally ill patients seen at Aga Khan University Hospital, Nairobi, between July 2010 and December 2015, and that met the inclusion criteria were included in the study. Results: In total, 216 records of terminally ill patients were analyzed: 89 records were of patients that had AD and 127 records were of patients that did not have AD. The proportion of terminally ill patients that had completed AD was 41.2%. The factors that were associated with the completion of AD on bivariate analysis were history of ICU admission, history of endotracheal intubation, functional status of the patient, the medical specialty taking care of the patient, patient's caregiver discussing the AD with the patient, and a palliative specialist review. On multivariate regression analysis, discussion of AD with a caregiver and patient's functional impairment were the factors with statistically significant association with completion of AD. Conclusions: The proportion of terminally ill patients that had AD in their medical records was significant. However, most terminally ill patients did not have AD. Our data, perhaps the first on the subject in East Africa, suggest that most of the factors associated with AD completion mirrored those seen in other regions of the world. Discussion between patient and their physician and patient's functional impairment were the factors independently associated with completion of AD. Therefore, physicians need to be aware of the importance of discussions of AD with their patients. [ABSTRACT FROM AUTHOR]

Background: Cachexia is defined as the on-going loss of skeletal muscle mass that cannot be fully reversed by conventional nutritional support. It is found in up to 80% of patients with advanced cancer and has profound psycho-social consequences for patients and their families. Previous studies demonstrate that many healthcare professionals receive little formal education in cachexia management leading them to feel that they have limited understanding of the syndrome and cannot intervene effectively. This study aims to examine the value of a dedicated cachexia clinic and its influence on staff understanding and practice. Methods: An exploratory qualitative study was conducted. The study employed semi-structured interviews with a range of healthcare professionals responsible for designing and delivering cancer care in a large teaching hospital in Australia. This hospital had a dedicated cachexia clinic. Results: In-depth interviews were conducted with 8 healthcare professionals and senior managers. Four themes were identified: formal and informal education; knowledge and understanding; truth telling in cachexia and palliative care; and, a multi-disciplinary approach. Findings show that improved knowledge and understanding across a staff body can lead to enhanced staff confidence and a willingness to address cancer cachexia and its consequences with patients and their families. Conclusion: Comparisons with similar previous research demonstrate the advantages of providing a structure for staff to gain knowledge about cachexia and how this can contribute to feelings of improved understanding and confidence necessary to respond to the challenge of cachexia. [ABSTRACT FROM AUTHOR]

Background: Medical errors have been recognized as a relevant public health concern and research efforts to improve patient safety have increased. In palliative care, however, studies on errors are rare and mainly focus on quantitative measures. We aimed to explore how palliative care patients perceive and think about errors in palliative care and to generate an understanding of patients' perception of errors in that specialty. Methods: A semistructured qualitative interview study was conducted with patients who had received at least 1 week of palliative care in an inpatient or outpatient setting. All interviews were transcribed verbatim and analysed according to qualitative content analysis. Results: Twelve patients from two centers were interviewed (7 women, median age 63.5 years, range 22-90 years). Eleven patients suffered from a malignancy. Days in palliative care ranged from 10 to 180 days (median 28 days). 96 categories emerged which were summed up under 11 umbrella terms definition, difference, type, cause, consequence, meaning, recognition, handling, prevention, person causing and affected person. A deductive model was developed assigning umbrella terms to error-theory-based factor levels (definition, type and process-related factors). 23 categories for type of error were identified, including 12 categories that can be considered as palliative care specific. On the level of process-related factors 3 palliative care specific categories emerged (recognition, meaning and consequence of errors). Conclusion: From the patients' perspective, there are some aspects of errors that could be considered as specific to palliative care. As the results of our study suggest, these palliative care-specific aspects seem to be very important from the patients' point of view and should receive further investigation. Moreover, the findings of this study can serve as a guide to further assess single aspects or categories of errors in palliative care in future research. [ABSTRACT FROM AUTHOR]

Background: During the past decade an increasing number of people live with advanced cancer mainly due to improved medical treatment. Research has shown that many people with advanced cancer have problems with everyday activities, which have negative impact on their quality of life, and that they spend a considerable part of their time at home. Still, research on interventions to support the performance of and participation in everyday activities is only scarcely available. Therefore, the occupational therapy-based "Cancer Home-Life Intervention" consisting of tailored adaptive interventions applied in the participant's home environment was developed. The objective of this study is to examine the effectiveness and cost-effectiveness of the Cancer Home-Life Intervention compared to usual care on the performance of and participation in everyday activities and quality of life in people with advanced cancer living at home. Methods: The study is a randomised, controlled trial (RCT) including an economic evaluation. The required sample size of 272 adults living at home will be recruited from outpatient clinics at two Danish hospitals. They should be diagnosed with cancer; evaluated incurable by the responsible oncologist; and with a functional level 1-2 on the WHO performance scale. The primary outcome is the quality of performance of activities of daily living. Secondary outcomes are problems with prioritised everyday activities; autonomy and participation; and health-related quality of life. Participants are randomly assigned to: a) The Cancer Home-Life Intervention in addition to usual care, and b) Usual care alone. Discussion: The trial will show whether the Cancer Home-Life Intervention provides better support for people with advanced cancer living at home in performing and participating in everyday activities, and whether it contributes to their health-related quality of life. The economic evaluation alongside the RCT will show if the Cancer Home-Life Intervention is cost-effective. The trial will also show the acceptability of the intervention to the target group, and whether subgroups of participants will benefit more than others. Trial registration: ClinicalTrials.gov Identifier NCT02356627. Registered 02/02/2015. [ABSTRACT FROM AUTHOR]

Background: There are a number of studies dedicated to characteristics of sedation, but these studies are mostly bound to western country practices. The aim of this study is to describe the characteristics of patients who suffered from cancer and who had been sedated until their death in Shanghai, China. Methods: Retrospective medical data of 244 terminally ill cancer patients including 82 sedated patients were collected. Data collected included demographic characteristics, disease-related characteristics and details of the sedation. Results: In sedated cases, patients and/or caregivers gave the consent to start palliative sedation due to unmanageable symptoms. On average, sedation was performed 24.65(±1.78)hours before death. Agitated delirium and dyspnea were the most frequent indications for palliative sedation. There was no significant difference in survival time from admission till death between sedated and non-sedated patients (p > 0.05). Conclusions: Palliative sedation is effective for reducing terminally ill cancer patients' suffering without hastening death. Prospective research is needed to determine the optimal conditions for Chinese patients including indications, decision making process, informed consent, cultural and ethical issues, type of sedation and drugs. [ABSTRACT FROM AUTHOR]

Background Music therapy is one of the most frequently used complementary therapies in different palliative care settings. Despite its long tradition and high acceptance by other health-care professionals, evidence on the effectiveness of music therapy interventions for terminally ill patients is rare. Recent reviews and health-care reports consistently point out the need of music therapists to provide an evidence-based rationale for their clinical treatments in this field. Therefore, the present study evaluates the psychological and physiological response of palliative care patients to a standardized music therapy relaxation intervention in a randomized controlled trial. Methods/design A sample of 84 participants from a palliative care unit in Heidelberg is randomized to either two sessions of music therapy or two sessions of a verbal relaxation exercise, each lasting 30 minutes. The music therapy sessions consist of live played monochord music and a vocal improvisation, the control group uses a prerecorded excerpt from the mindfulness-based stress reduction program containing no musical elements. Outcome measures include self- report data on subjective relaxation, well-being, pain intensity, and quality of life, as well as continuous recording of heart rate variability and blood volume pulse as indicators of autonomous nervous system functioning. Discussion To our knowledge, this study is the first clinical trial in Europe and one of very few randomized controlled trials worldwide to systematically examine the effects of music therapy in palliative care. [ABSTRACT FROM AUTHOR]

Background: Lung cancer is the leading cause of death from cancer in England. About 40% of patients with lung cancer are diagnosed following an emergency admission (DFEA) to hospital. DFEA is more common in women, and more likely with increasing age and deprivation. Most have advanced disease and survival is poor, but little else is known about this group. The aim of this study is to obtain a detailed understanding of the characteristics, needs, experiences and outcomes of this group. Methods/Design: This is a single centre study with quantitative and qualitative work packages (WP). WP1 gathers basic details about all patients diagnosed with lung cancer during a 12 month period, focusing on demographics, diagnostic and treatment pathways and selected outcomes. WP2 obtains information from those patients DFEA or, when unable, their carers, about their holistic needs and experiences, using the Sheffield Profile for Assessment and Referral to Care questionnaire and selected questions from the National Cancer Patient Experience Survey. WP3 uses in-depth qualitative interviews with patients and carers to obtain detailed accounts of their symptoms, help-seeking behaviours prior to admission and subsequent experiences of care. Discussion: Relatively little is known about the experiences of lung cancer patients DFEA and this study will provide detailed information about their needs, characteristics, experiences and outcomes. It should identify areas in the diagnostic and treatment pathway where there is scope to improve the care provided to this group of patients and their carers. The findings will also inform the need for further focused research. [ABSTRACT FROM AUTHOR]

Background: Under-diagnosis of pain is a serious problem in cancer care. Accurate pain assessment by physicians may form the basis of effective care. The aim of this study is to examine the association between late referral to a Palliative Care Team (PCT) after admission and the under-diagnosis of pain by primary physicians. Methods: This retrospective study was performed in the Teikyo University teaching-hospital for a period of 20 months. We investigated triads composed of 213 adult cancer inpatients who had coexisting moderate or severe pain at the initial PCT consultation, 77 primary physicians, and 4 palliative care physicians. The outcome of the present study was the under-diagnosis of pain by primary physicians with routinely self-completed standard format checklists. The checklists included coexisting pain documented independently by primary and palliative care physicians at the time of the initial PCT consultation. Under-diagnosis of pain was defined as existing pain diagnosed by the palliative care physicians only. Late referral to PCTs after admission was defined as a referral to the PCT at ≥20 days after admission. Because the two groups displayed significantly different regarding the distributions of the duration from admission to referral to PCTs, we used 20 days as the cut-off point for “late referral.” Results: Accurate pain assessment was observed in 192 triads, whereas 21 triads displayed under-diagnosis of pain by primary physicians. Under-diagnosis of pain by primary physicians was associated with a longer duration between admission and initial PCT consultation, compared with accurate pain assessment (25 days versus 4 days, p < 0.0001). After adjusting for potential confounding factors, under-diagnosis of pain by the primary physicians was significantly associated with late (20 or more days) referral to a PCT (adjusted odds ratio, 2.91; 95% confidence interval, 1.27 − 6.71). Other factors significantly associated with under-diagnosis of pain were coexisting delirium and case management by physicians with < 6 years of clinical experience. Conclusions: Under-diagnosis of pain by primary physicians was associated with late referral to PCTs. Shortening the duration from admission to referral to PCTs, and increasing physicians’ awareness of palliative care may improve pain management for cancer patients. [ABSTRACT FROM AUTHOR]

Background: The need for palliative care is increasing. Since almost every junior doctor will come across palliative care patients, it is important to include palliative care in the undergraduate curriculum. The objective of this research is to gather undergraduate students' views on palliative care in terms of its importance, their confidence in and knowledge of the domain. Methods: Final-year medical students at four Dutch medical faculties were surveyed. The questionnaire measured their views on the education they had received, their self-reported confidence in dealing with palliative care patients and their knowledge of palliative care. Results: Two hundred twenty-two medical students participated in this study. Students considered palliative care education relevant, especially training in patient-oriented care and communication with the patient. Students felt that several topics were inadequately covered in the curriculum. Overall, the students did not feel confident in providing palliative care (59.6%), especially in dealing with the spiritual aspect of palliative care (77%). The knowledge test shows that only 48% of the students answered more than half of the questions correctly. Conclusion: The students in this study are nearly junior doctors who will soon have to care for palliative patients. Although they think that palliative care is important, in their opinion the curriculum did not cover many important aspects, a perception that is also in line with their lack of confidence and knowledge in this domain. Therefore, it is important to improve palliative care education in the medical curriculum. [ABSTRACT FROM AUTHOR]

Background: Patients who engage in Advance Care Planning (ACP) are more likely to get care consistent with their values. We sought to determine the barriers and facilitators to ACP engagement after discharge from hospital. Methods: Prior to discharge from hospital eligible patients received a standardized conversation about prognosis and ACP. Each patient was given an ACP workbook and asked to complete it over the following four weeks. We included frail elderly patients with a high risk of death admitted to general internal medicine wards at a tertiary care academic teaching hospital. Four weeks after discharge we conducted semi-structured interviews with patients. Interviews were transcribed, coded and analysed with thematic analysis. Themes were categorized according to the theoretical domains framework. Results: We performed 17 interviews. All Theoretical Domain Framework components except for Social/Professional Identity and Behavioral Regulation were identified in our data. Poor knowledge about ACP and physician communication skills were barriers partially addressed by our intervention. Some patients found it difficult to discuss ACP during an acute illness. For others acute illness made ACP discussions more relevant. Uncertainty about future health motivated some participants to engage in ACP while others found that ACP discussions prevented them from living in the moment and stripped them of hope that better days were ahead. Conclusions: For some patients acute illness resulting in admission to hospital can be an opportunity to engage in ACP conversations but for others ACP discussions are antithetical to the goals of hospital care. [ABSTRACT FROM AUTHOR]

Background: There is a pressing need to improve end-of-life care in acute settings. This requires meeting the learning needs of all acute care healthcare professionals to develop broader clinical expertise and bring about positive change. The UK experience with the Liverpool Care of the Dying Pathway (LCP), also demonstrates a greater focus on implementation processes and daily working practices is necessary. Methods: This qualitative study, informed by Normalisation Process Theory (NPT), investigates how a tool for end-of-life care was embedded in a large Australian teaching hospital. The study identified contextual barriers and facilitators captured in real time, as the ‘Clinical Guidelines for Dying Patients’ (CgDp) were implemented. A purposive sample of 28 acute ward (allied health 7 [including occupational therapist, pharmacists, physiotherapist, psychologist, speech pathologist], nursing 10, medical 8) and palliative care (medical 2, nursing 1) staff participated. Interviews (n = 18) and focus groups (n = 2), were audio-recorded and transcribed verbatim. Data were analysed using an a priori framework of NPT constructs; coherence, cognitive participation, collective action and reflexive monitoring. Results: The CgDp afforded staff support, but the reality of the clinical process was invariably perceived as more complex than the guidelines suggested. The CgDp ‘made sense’ to nursing and medical staff, but, because allied health staff were not ward-based, they were not as engaged (coherence). Implementation was challenged by competing concerns in the acute setting where most patients required a different care approach (cognitive participation). The CgDp is designed to start when a patient is dying, yet staff found it difficult to diagnose dying. Staff were concerned that they lacked ready access to experts (collective action) to support this. Participants believed using CgDp improved patient care, but there was an absence of participation in real time monitoring or quality improvement activity. Conclusions: We propose a model, which addresses the risks and barriers identified, to guide implementation of end-of-life care tools in acute settings. The model promotes interprofessional and interdisciplinary working and learning strategies to develop capabilities for embedding end of life (EOL) care excellence whilst guided by experienced palliative care teams. Further research is needed to determine if this model can be prospectively applied to positively influence EOL practices. [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: Thoracic spine cancer metastases is frequently the cause of neurological deficits. Despite the availability of diagnostics, delays in treatment are still quite common. The aim of this work is to analyze the reasons for delayed diagnostics and treatment, in patients with neurological deficits in the course of metastatic spine disease. Methods: In our study patients medical data was analyzed from 2013 to 2015. The analysis covered the following aspects: symptoms of metastases, time of neurological deficits occurrence, where and when initial diagnostics were performed, time from diagnosis to proper surgical treatment in an oncological centre. In total, 411 patients were consulted and 287 were operated on. Of 112 patients with neurological deficits, 64 underwent surgeries. Women represented the majority of the patients. The most common primary neoplasms were breast cancer and myeloma. Results: In 75% of the patients neurological symptoms occurred prior to admission to a hospital. The average time between the onset of neurological symptoms and medical consultation was 4 days. The patients were diagnosed mainly at neurologic, orthopedic and emergency departments. The mean time between undergoing radiological examinations and receiving the examinations results was 2.4 days for CT and 2.8 days for MRI. The average time between a patients’ admission from the department where they were initially diagnosed, to the orthopedic oncology ward was 4.5 days. Conclusions: The most common cause of the delayed treatment of patients with neurological deficits, in the course of metastatic spine disease, is a combination of the lack of knowledge among patients and healthcare personnel regarding the necessity of early diagnosis. [ABSTRACT FROM AUTHOR]