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Clinical research is undertaken to improve care for palliative patients, but little is known about how to support the broad uptake of resultant innovations. The objectives of this paper are to: (1) explore the uptake of the Edmonton Symptom Assessment System throughout the global palliative care community through the lens of a bibliometric review — a research method that maps out the journey of new knowledge uptake by evaluating where key articles are cited in published literature; (2) construct hypotheses on attributes of the global community of palliative care learners; and (3) make inferences on approaches that could improve knowledge transfer. While preliminary, results of the study suggest several specific approaches that could support widespread uptake of innovations in palliative care: targeting publication in high impact, international journals; explicitly focusing on how the innovation is applied to best practice; encouraging additional research to expand on early studies; consciously targeting key professional groups and organizations to promote discussion in the grey literature; and early translation and promotion within multiple languages. [ABSTRACT FROM AUTHOR]

Background: there is increasing interest in combining qualitative and quantitative research methods to provide comprehensiveness and greater knowledge yield. Mixed methods are valuable in the development and evaluation of complex interventions. They are therefore particularly valuable in palliative care research where the majority of interventions are complex, and the identification of outcomes particularly challenging.Aims: this paper aims to introduce the role of mixed methods in the development and evaluation of complex interventions in palliative care, and how they may be used in palliative care research.Content: the paper defines mixed methods and outlines why and how mixed methods are used to develop and evaluate complex interventions, with a pragmatic focus on design and data collection issues and data analysis. Useful texts are signposted and illustrative examples provided of mixed method studies in palliative care, including a detailed worked example of the development and evaluation of a complex intervention in palliative care for breathlessness. Key challenges to conducting mixed methods in palliative care research are identified in relation to data collection, data integration in analysis, costs and dissemination and how these might be addressed.Conclusions: the development and evaluation of complex interventions in palliative care benefit from the application of mixed methods. Mixed methods enable better understanding of whether and how an intervention works (or does not work) and inform the design of subsequent studies. However, they can be challenging: mixed method studies in palliative care will benefit from working with agreed protocols, multidisciplinary teams and engaging staff with appropriate skill sets. [ABSTRACT FROM PUBLISHER]

Objective: This review aims at gaining a broad overview of national approaches about Palliative care (PC) implementation into health care systems in countries that have PC identified within their national policies and strategies. Methods: Paper searching was conducted using both peer-reviewed databases and gray literature sources covering governmental reports with PC strategies from 2000 onward. Articles published in English that cited at least 1 category of the WHO's public health PC model were included. Qualitative content analysis was used for data analysis and synthesis of findings. Results: Thirteen reports met the inclusion criteria. Education and appropriate policies were the most frequent strategies covered by all countries included. Under education; information about training health care providers was needed for the effective introduction of a PC program. Reviewing standards of care required to deliver PC effectively, and financial support for PC service development were considered the central policies needed. Furthermore, partnerships and collaborations across the health systems as well as providing care based on patients' needs were required for the provision of a PC program. Conclusion: It is of the essence to learn from countries demonstrating enhanced PC practices before the implementation of a new PC program in a given country. Such practices could be used as a guide and to address barriers that may hinder the development of PC at a national level. Best practices can be achieved by focusing on educational and policy-based strategies through identifying patients' needs, assessing general public awareness, health care providers' knowledge and training as well as incorporating stakeholders' perspectives. [ABSTRACT FROM AUTHOR]

Background: The need for palliative care is rising globally with 76% of those who are in need living in low- and middle-income countries (LMICs). Digital health interventions (DHIs) have been identified as a means of making palliative care more widely accessible. This review summarizes the range and characteristics of DHIs used to deliver palliative care in LMICs and sought to identify factors that influence their implementation and utilization. Objectives: This review aims to summarize the range and characteristics of DHIs used to deliver palliative care in LMICs and identify factors that influence their implementation and utilization. Design: Mixed-method systematic review incorporating both quantitative and qualitative data. Data sources and methods: All studies focusing on DHIs for patients who need palliative care (adults/children) and their caregivers (patient and caregiver centred) in LMICs and published in English were identified through a systematic search of MEDLINE, EMBASE, PsycINFO and CINAHL databases. Data synthesis and analysis were carried out following the convergent integrated approach based on the Joanna Briggs Institute (JBI) methodology for mixed-methods systematic reviews. Results: Fifteen studies were included (three qualitative, four mixed-methods and eight quantitative studies). Telemedicine/mHealth was the most reported DHI utilized in LMICs in delivering palliative care. Patients and caregivers benefited from using DHIs in many ways including increased access to care with reduced discomfort, travel time and risk of health care-associated infections. Health care providers also reported that using DHI such as telemedicine enables them to provide care in a more effective and efficient way. Four factors were identified as the main barriers to implementation: resource constraints; literacy, training and skills; governance, operational and communication issues and technical issues. Conclusion: DHIs, such as telemedicine, have the potential to enhance accessibility to palliative care in LMICs, particularly in rural areas. Comprehensive strategies for their use are required to address the identified barriers. [ABSTRACT FROM AUTHOR]

Objective: Increasing numbers of Canadians living with complex, life-limiting conditions demand high-quality palliative care. Timely access to palliative care can help to reduce stress, improve quality of life, and provide relief for patients and their families. The purpose of this study is to explore the experiences of family physicians (FPs) regarding the decision and process of introducing palliative care to patients with chronic diseases. Methods: Interpretive description methodology was used to guide the investigation of the research question. Thirteen Calgary Zone FPs participated in individual interviews. Data was collected iteratively and analyzed using constant comparative analysis. Results: Analysis of interviews identified the overarching themes of dignity and empowerment, which describe the experience of FPs introducing palliative care to chronically ill patients. Four subthemes were woven throughout, including the art of conversation, therapeutic relationships, timing, and preparation of the patient and family. Discussion: While the benefits of palliative conversations are widely accepted, a deeper understanding of how FPs can be supported in developing this aspect of their practice is needed. Understanding their experience provides knowledge that can serve as a framework for future education, mentorship, and competency development. [ABSTRACT FROM AUTHOR]

Background: Groote Schuur Hospital is a large Academic Hospital in South Africa that is in the process of integrating palliative care (PC) via a vertical nurse-led doctor-supported (VNLDS) service that was initially established to deliver clinical care. PC integration should occur across multiple dimensions and may result in variable degrees of integration between levels of the healthcare system. This research evaluates the VNLDS through a theory-driven evaluation to describe how the service affected integration. Methods: A mixed-method sequential design consisting of a narrative literature review on the theory of integration and PC, retrospective quantitative data from a PC service delivery database, qualitative data from semi-structured interviews and document analyses. It was structured in three phases which assisted in confirming and expanding the data. Statistical analyses, deductive thematic coding and documentary analyses were conducted according to the conceptual framework of PC integration. Results: The PC integration process was facilitated in the following ways: (i) the service provided good clinical PC; (ii) it was able to integrate on a professional level into specific diseases, such as cancer but not in all diseases; (iii) developing organizational structures within the service and (iv) the observed benefit of good clinical care increased the value stakeholders assigned to PC, thereby driving the adoption of PC. However, there are still clinicians who do not refer to PC services. This gap in referral may be grounded in assumptions and misconceptions about PC, especially at the organizational level. Discussion: Observed PC service delivery is core to integrating PC across the healthcare system because it challenges normative barriers. However, the VNLDS could not achieve integration in leadership and governance, education and hospital-wide guidelines and policies. Whole system integration, foregrounding organizational commitment to PC excellence, is core to integrating PC. Conclusion: The VNLDS service has effectively linked PC in specific disease profiles and normalized the PC approach where healthcare workers observed the service. These integrational gaps may be grounded in assumptions and misconceptions about PC, especially at the organizational level. Plain language summary: How does a nurse led palliative care service affect palliative care integration in a big teaching hospital? This article evaluates a nurse led doctor supported service in providing palliative care and how it affected the integration of palliative care in an Academic Hospital in South Africa. This study will help us understand the goals of integration, the extent of integration achieved by this service and how and why it was achieved or not. [ABSTRACT FROM AUTHOR]

Background: Individuals with palliative care needs face increased risk of discontinuity of care as they navigate between healthcare settings, locations and practitioners which can result in poor outcomes. Little is known about interactions that occur between specialist and generalist palliative care teams as patients are transition from hospital to community-based care after hospitalisation. Aim: To understand what happens between inpatient specialist palliative care teams and the generalist teams who provide post-discharge palliative care for shared patients. Design: A constructivist grounded theory approach, using semi-structured interviews and constant comparative analysis, including coding, memo-writing and diagram construction. Settings/participants: Interviews (n = 21) with specialist palliative care clinicians and clinicians in other specialties providing generalist palliative care. Specialists had training in palliative care and worked in specialty palliative care practices; other clinicians worked in primary care or oncology and did not have specialised palliative care training. Results: A grounded theory of interdependence between specialist and generalist palliative care teams across healthcare settings was constructed. Two states of inter-team functioning were found which related to how teams perceived themselves: separate teams or one cross-boundary team. Three conditions influenced these two states of inter-team functioning: knowing the other team; communicating intentionally; and acknowledging and valuing the role of the other team. Conclusions: Teams need to explicitly consider and agree their mode of functioning, and enact changes to enhance knowledge of the team, intentional communication and valuing other teams' contributions. Future research is needed to test or expand this theory across a range of cultures and contexts. [ABSTRACT FROM AUTHOR]

This study aimed to evaluate health professionals’ views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice. [ABSTRACT FROM PUBLISHER]

This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in children where, because of their rarity, little is understood regarding the significant symptom challenges of families and care professionals who support them. In this initial phase, care professionals (n = 43) and families (n = 16) completed a survey to identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage. Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals’ rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirement for additional clinical evidence to support symptom management, and the progressive nature of these diseases where symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties, visual impairments and communication impairments as those being most difficult to manage and having most impact on quality of life for children and families. [ABSTRACT FROM PUBLISHER]

In economically developed countries there is a rapidly increasing number of older people living and dying in care homes. The relative isolation of nursing care homes from the development of palliative care, the poor retention and recruitment of staff, and the lack of medical cover, hinder the provision of quality end-of-life care. End-of-life care strategies internationally highlight the benefit of using tools to help improve end-of-life care in care homes. All seven private nursing care homes within one district in Scotland undertook to implement, as a package, two end-of-life care tools, namely, the Gold Standards Framework for Care Homes (GSFCH) and an adapted Liverpool Care Pathway for Care Homes (LCP). A model of high facilitation, visiting the homes every 10—14 days with significant in-house staff training, was used to implement the 18-month programme. The notes of 228 residents who had died prior to and during the project were examined, alongside a staff audit looking at the effect that the project had on practice. A nurse researcher undertook qualitative interviews of bereaved relatives, pre-/post-implementation. This paper reports the results of an in-depth evaluation of professional practices and residents outcomes. There was a highly statistically significant increase in use of Do Not Attempt Resuscitation (DNAR) documentation, advance care planning and use of the LCP. An apparent reduction in unnecessary hospital admissions and a reduction in hospital deaths from 15% deaths pre-study to 8% deaths post-study were also found. Further work is needed to assess the optimum input required for successful implementation. [ABSTRACT FROM PUBLISHER]

Action research in health care is a relatively new research approach, which is adopted when one aim of the research is to bring about change in practice and to research the process of that change. This paper describes the way action research, as a research methodology, can be used to develop palliative care knowledge in generalist care settings. An overview of action research is presented and its relationship to more conventional research paradigms. Two action research projects, undertaken to develop knowledge about end-of-life care for older people in care homes, are used to illustrate the key principles of action research, methods of data collection and data analysis. Finally, the challenges of such, utilising an action research approach and its strengths, are discussed. [ABSTRACT FROM AUTHOR]

Introduction: Using technology in the clinical setting where clinical alarms frequently occur, resulting in many false alarms, which is called alarm fatigue, alarm fatigue may increase nurses' distraction, and that might negatively affect patient safety. Objective: This study aimed to assess alarm fatigue among oncology nurses in Jordan. Methods: A descriptive cross-sectional design was used in a non-profit specialized cancer center. A self-reported questionnaire was answered by nurses who participated in the study. Results: A total of 222 questionnaires were analyzed with a more than 95% response rate. More than half of the sample (60.4%) were females. The participants were young nurses with a mean age of 25.18 ± 3.33 years. The total mean score of alarm fatigue was 31.62 ± 7.14 on a scale ranging from zero to 52. Post-hoc analysis showed that the palliative unit (25.73 ± 7.22) and emergency room (28.73 ± 6.62) had low scores of total mean alarm fatigue than remaining area of practice, such as the ICU (33.92 ± 6.99); p -value:.004. Conclusion: Alarm fatigue is a global issue affecting many practice areas. An educational program is recommended for nurses to learn how to deal with alarm fatigue. In order to effectively manage alarms, nurses' education and individual training are crucial. [ABSTRACT FROM AUTHOR]

Background: Broad consensus exists on the relevance of advance care planning in dementia. Although people with young-onset dementia and their family are hypothesized to have distinct needs and preferences in this area, they are hardly ever included in studies. Aim: We aim to explore the experiences with and views on advance care planning of people with young-onset dementia and their family caregivers. Design: A qualitative study was conducted, analyzing semi-structured interviews through the method of constant comparative analysis. Setting/participants: We included 10 people with young-onset dementia and 10 of their family caregivers in Flanders. Results: Participants lacked awareness about the concept of advance care planning, especially as a communication process. They had not or barely engaged in planning future care yet pointed out possible benefits of doing so. Initially, people with young-onset dementia and their caregivers directly associated advance care planning with planning for the actual end of life. When discussing advance care planning as a communication process, they paid ample attention to non-medical aspects and did not distinguish between medical, mental, and social health. Rather, respondents thought in the overarching framework of what is important to them now and in the future. Conclusions: Engagement in advance care planning might be hindered if it is too medicalized and exclusively patient-centered. To accommodate advance care planning to people with young-onset dementia's and their caregivers' needs, it should be presented and implemented as a holistic, flexible, and relational communication process. Policy and practice recommendations are provided on how to do so. [ABSTRACT FROM AUTHOR]

We conducted a feasibility study of sublingual methadone for breakthrough cancer pain, to determine whether a larger, randomized trial was warranted, and to identify a study design that would be likely to succeed. From approximately 1930 patients in the initial pool, nine patients were enrolled. Five patients completed the study, generating data on 83 discrete episodes of breakthrough cancer pain at optimal dose. Mean pain intensity dropped by 1.7 points (on a 10 point numerical scale) within 10 min of sublingual methadone administration, and by 3.2 points after 15 min. No serious or severe toxicity was encountered. Based on the results of this feasibility study, a larger randomized clinical trial of sublingual methadone for breakthrough cancer pain using this trial model would not be successful. Extensive information obtained from small numbers of carefully studied patients provides proof of concept that sublingual methadone is effective, safe, and well tolerated. [ABSTRACT FROM AUTHOR]

It is a challenge to ensure high-quality palliative care. The aim was to investigate the perceptions of health care professionals (HCPs) working in a combined acute oncology-palliative care unit regarding the quality of the palliative care received by the patients and how important the care was to the patients. A Swedish total-survey cross-sectional study including 41 HCPs (54% response rate) was conducted with the 52 items Quality from the Patient's Perspective – Palliative Care instrument, answered in two different ways: as actual care received and subjective importance. The STROBE-checklist was used. The areas for improvements were related to symptom relief, spiritual and existential needs, information, patient participation, continuity of care, care planning, cooperation and coordination of care, as subjective importance scores were higher than corresponding scores for care received (p ≤.025). Providing high-quality palliative care alongside curative treatments for cancer patients is known to be challenging and could explain the results in this study. Implementation of a person-centred palliative care model based on the hospice philosophy could be a solution. [ABSTRACT FROM AUTHOR]

Background: Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as 'palliative sedation'. Aim: To assess the use and labelling of 'continuous administration of sedatives within the last 7 days of life', based on objective operational criteria, on a palliative care unit. Design: Retrospective cohort study, using medical records. Explorative statistical analysis (SPSS 23). Setting/participants: Patients who died on a palliative care unit from August 2014 to July 2015. Sedatives recorded were benzodiazepines, levomepromazine, haloperidol ≤5 mg/day and propofol. Results: Of the 192 patients, 149 (78%) patients received continuous sedatives within the last week of life. The prevalence of delirium/agitation was significantly higher in patients with continuous sedatives compared to those without continuous sedatives at admission to the unit (35% vs 16%, p = 0.02) and on the day before death (58% vs 40%, p = 0.04). The term '(palliative) sedation' was used in the records for 22 of 149 (15%) patients with continuous sedatives. These patients had significantly higher total daily midazolam doses 2 days before death (median (range), 15.0 (6.0-185.0) mg vs 11.5 (1.0-70.0) mg, p = 0.04) and on the day of death (median (range), 19.5 (7.5-240.0) mg vs 12.5 (2.0-65.0) mg, p = 0.01). The dose range was large in both groups. Conclusion: The prevalence of delirium/agitation was associated with the administration of continuous sedatives. There was no consistent pattern regarding labelling the use of continuous sedatives as '(palliative) sedation'. Multicentre mixed-methods research is needed for a better characterization of sedation practices in palliative care. [ABSTRACT FROM AUTHOR]

Background: Effective patient--family communication can reduce patients' psychosocial distress and relieve family members' current suffering and their subsequent grief. However, terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other. Aim: To develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk, explore anticipated benefits and challenges of using Dignity Talk, and solicit suggestions for protocol improvement. Design: A convergent parallel mixed-methods design. Dignity Talk, a self-administered question list, was designed to prompt end- of-life conversations, adapted from the Dignity Therapy question framework. Participants were surveyed to evaluate the Dignity Talk question framework. Data were analyzed using qualitative and quantitative methods. Setting/participants: A total of 20 palliative patients, 20 family members, and 34 healthcare providers were recruited from two inpatient palliative care units in Winnipeg, Canada. Results: Most Dignity Talk questions were endorsed by the majority of patients and families (>70%). Dignity Talk was revised to be convenient and flexible to use, broadly accessible, clearly stated, and sensitively worded. Participants felt Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. Participants suggested that patients and family members be given latitude to respond only to questions that are meaningful to them and within their emotional capacity to broach. Conclusion: Dignity Talk may provide a gentle means of facilitating important end-of-life conversations. [ABSTRACT FROM AUTHOR]

A lack of knowledge and skills in pediatric palliative care may create hesitation in caring for children with serious life-threatening conditions and their families. Our research examined the effectiveness of pediatric palliative care training for pediatric clinicians. A pretest–posttest study provided educational training in pediatric palliative care to pediatric clinicians and used a pretest and a posttest to assess outcomes. Fifty pediatric clinicians attended this research with 83.3% response rate. After training, participants reported significantly increased confidence in a variety of areas, including providing emotional support to clinicians, personal knowledge, skills, and communication; ethical and legal concerns; and providing emotional support to dying children and their families. Results showed a significant main effect of training on confidence levels (p < .000). This suggests that education can effectively boost pediatric clinicians’ confidence regarding providing pediatric palliative care and therefore should regularly be provided to clinicians. [ABSTRACT FROM AUTHOR]

Background: The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease. Aim: To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease. Design: A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale–symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches. Setting/participants: Breathless patients with advanced malignant and non-malignant disease. Results: A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14–67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach’s alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met. Conclusion: Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness. [ABSTRACT FROM AUTHOR]

Background: The main measure to generate utility data for economic evaluations is the EQ-5D, but no study has tested whether or how to map from palliative care measures to the EQ-5D Aims: To assess the level of conceptual overlap between palliative outcomes and the EQ-5D, and the feasibility of mapping between them to obtain utilities for the Palliative care Outcome Scale Design: A cross-sectional secondary analysis of data from three studies. Setting/participants: Patients receiving palliative care and bereaved relatives, recruited from three tertiary National Health Service hospitals in South London Methods: The overlap between both measures was assessed using principal component analysis. The Palliative care Outcome Scale was mapped onto the EQ-5D using three regression models Results: Spearman's correlations between both instruments were low (mean rho = 0.11). The principal component analysis showed the Palliative care Outcome Scale is associated with only two EQ-5D dimensions (pain; and anxiety/depression). No Palliative care Outcome Scale items loaded onto the mobility, self-care and usual activities dimensions of the EQ-5D. The mapping models performed poorly at predicting utilities from Palliative care Outcome Scale data (mean absolute error >0.3 and R2 <0.10). Hence, none of the models can be recommended as acceptable for calculating utilities from Palliative care Outcome Scale responses Conclusion: Differences between the Palliative care Outcome Scale and the EQ-5D do not undermine the qualities of either instrument when used for their own purposes. However, due to conceptual differences, the EQ-5D does not capture some of the concerns measured by the Palliative care Outcome Scale, and therefore, mapping onto the EQ-5D is unlikely to provide an appropriate basis for estimating utilities for conducting economic evaluations in palliative care studies. [ABSTRACT FROM AUTHOR]

Background: Gathering clinical evidence data on patients’ palliative care needs is paramount to identify changes in outcomes over time and maintaining on-going quality improvement. Implementation of patient-centred outcome measures has been widely recommended. The routine use of these instruments in daily practice is challenging and not widespread. Aim: To implement a patient-centred outcome measure in daily practice and fulfil one quality indicator: improve pain during the 72 h after admission, in at least 75% of patients. Design: An observational prospective study. The Palliative care Outcome Scale was used at admission (T0), third day (T1) and weekly. Setting/participants: Hospital palliative care unit with 17 individual rooms. All patients admitted to the unit were included in the study. Results: Preliminary results (N = 84) revealed inconsistent and missing data (14%). Symptoms were sub-optimally controlled by T1. Processes changed, and only a team member could apply Palliative care Outcome Scale. Doctors were encouraged to grasp the meaning of Palliative care Outcome Scale results for each patient. The post-pilot included 317 patients. No missing data occurred. There was an improvement in most items between T0 and T1: ‘pain’ and ‘other symptoms’ presented statistical significant differences (p < 0.05). Conclusion: Implementing a patient-centred outcome measure in a hospital palliative care service is feasible and improves quality of care. Controlling high pain at T0 improved (>80%) by T1. Results became more consistent and symptom control was improved overall. Patients are evaluated based on holistic domains by an interdisciplinary team and we have added a much needed measure to help guide improvement of the quality of care provided. [ABSTRACT FROM AUTHOR]

Background: Enabling patients to die in their preferred place is important but achieving preferred place of death may increase the informal carer's risk into bereavement. Aim: To determine risk factors of family carers bereaved through cancer in Northern Ireland. Design: These results form part of a larger QUALYCARE-NI study which used postal questionnaires to capture quantitative data on carer's bereavement scores using the Texas Revised Inventory of Grief. Setting/participants: Participants were individuals who registered the death of a person between 1 December 2011 and 31 May 2012; where cancer (defined by ICD10 codes C00-D48) was the primary cause; where the deceased was over 18 years of age and death occurred at home, hospice, nursing home or hospital in Northern Ireland. Participants were approached in confidence by the Demography and Methodology Branch of the Northern Ireland Statistics and Research Agency. Those wishing to decline participation were invited to return the reply slip. Non-responders received a second questionnaire 6 weeks after initial invitation. Results indicated that risk factors positively influencing bereavement outcomes included patients having no preference for place of death and carers remaining in employment pre- or post-bereavement. In contrast, patients dying in hospital, carers stopping work, being of lower socio-economic status and close kinship to the deceased negatively affected bereavement scores. Family carers should be adequately supported to continue in employment; priority should be given to assessing the financial needs of families from lower socio-economic areas; and bereavement support should focus on close relatives of the deceased. [ABSTRACT FROM AUTHOR]

Background: Methicillin-resistant Staphylococcus aureus is a common organism in hospitals worldwide and is associated with morbidity and mortality. However, little is known about the prevalence in palliative care patients. Furthermore, there is no standardized screening protocol or treatment for patients for whom therapy concentrates on symptom control. Aim: Examining the prevalence of methicillin-resistant Staphylococcus aureus in palliative care patients as well as the level of morbidity and mortality. Design: We performed a prospective study where methicillin-resistant Staphylococcus aureus screening was undertaken in 296 consecutive patients within 48 h after admission to our palliative care unit. Medical history was taken, clinical examination was performed, and the Karnofsky Performance Scale and Palliative Prognostic Score were determined. Prevalence of Methicillin-resistant Staphylococcus aureus was compared to data of general hospital patients. Results: In total, 281 patients were included in the study having a mean age of 69.7 years (standard deviation = 12.9 years) and an average Karnofsky Performance Scale between 30% and 40%. The mean length of stay was 9.7 days (standard deviation = 7.6 days). A total of 24 patients were methicillin-resistant Staphylococcus aureus positive on the first swab. Median number of swabs was 2. All patients with a negative methicillin-resistant Staphylococcus aureus swab upon admission remained Methicillin-resistant Staphylococcus aureus negative in all subsequent swabs. Conclusion: Our study suggests that the prevalence of Methicillin-resistant Staphylococcus aureus among patients in an in-hospital palliative care unit is much higher than in other patient populations. [ABSTRACT FROM AUTHOR]

Background: Care relationships are crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost all studies on end-of-life care for people with ID have been conducted among caregivers. The views of people with ID about care relationships at the end of life have not been a specific focus of research. Aim: To explore relevant dimensions of the care relationships in end-of-life care from the perspectives of people with mild ID in the Netherlands. Design: Group interviews were conducted using nominal group technique. Interviews were inductively analysed by two researchers. Setting/participants: Seven groups participated (33 people). Inclusion criteria were as follows: having mild ID, being able to decide about participation and give informed consent, and not receiving end-of-life care. All groups were interviewed twice. Results: Two dimensions of care relationships were found: (1) ‘Ascertain, record and honour wishes’ of the ill person. Adequately dealing with care wishes, ‘last wishes’ and funeral wishes was of central importance: ‘it’s about their life’. We found an emphasis on control that seemed to reflect the participants’ experience that respecting autonomy does not always happen. (2) ‘Being there’: Ill people need people who are there for him or her, practically, as well as emotionally, socially and spiritually. Participants placed specific emphasis on providing positive experiences. Conclusion: The views of people with mild ID highlight the high demands which end-of-life care imposes on relational qualities of caregivers. This study shows the added value and potential of involving people with ID in studies on end-of-life care. [ABSTRACT FROM AUTHOR]

Background: The need for palliative care is growing internationally with an increasing prevalence of non-malignant diseases. The integrated care pathway was implemented in primary care by multidisciplinary teams from 2009 in a locality in the North East of England. Fourteen general practitioner practices provided data for the study. Aim: To find whether, how, and under what circumstances palliative care registrations are made for patients with non-malignant diseases in primary care. Design: General practitioner practice data were analysed statistically and qualitative data were collected from health care professionals and members of relevant organisations. Findings: A mixed-effects logistic model indicated a significant difference beyond the 0.1% level (p < 0.001) in registrations between the malignant and non-malignant groups in 2011, with an odds ratio of 0.09 (=exp(−2.4266)), indicating that patients in the non-malignant group are around 11 times (1/0.09) less likely to be registered than patients in the malignant group. However, patients with non-malignant diseases were significantly more likely to be registered in 2012 than in 2011 with an odds ratio of 1.46, significant beyond the 1% level. Qualitative analyses indicate that health care professionals find registering patients with non-malignant diseases stressful, yet feel that their confidence in treating this population is increasing. Conclusion: The integrated care pathway began to enable the reduction in inequalities in care by identifying, registering and managing an increasing number of palliative patients with non-malignant diseases. Consensual and inclusive definitions of palliative care were developed in order to legitimise the registration of such patients. [ABSTRACT FROM AUTHOR]

Background: As societies age and governments attempt to manage within constrained health budgets by moving care into community settings, women will be called upon to provide more palliative care in old age. However, little is known about gendered disparities for caregivers of people over the age of 65 years. Aim: To identify and synthesise the empirical literature between 1994 and 2014 that focusses on gender and family caregiving for people over the age of 65 years with a life-limiting illness. Design: Systematic review of qualitative and quantitative studies conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Supplemental review using a novel feminist quality appraisal framework. Data sources: Search of MEDLINE, CINAHL, PsycINFO, Sociological Abstracts and Gender Studies to find empirical studies on gender and family caregiving at end-of-life in the context of old age. Results: Of 19 studies identified, 9 presented thorough gender analyses. Gender themes included why people care, how they care, and the consequences of providing care. Women caregivers experienced a greater degree of mental and physical strain than their male counterparts. This was linked to societal expectation that women should provide a greater degree of care at the end-of-life for family members. Conclusion: Palliative family caregiving for older adults is gendered. Gender affects why people care and the consequences of providing care. Palliative care literature needs to incorporate a greater gender focus for future research and policy makers need to be aware of the gendered ramifications of providing more palliative care in the community. [ABSTRACT FROM AUTHOR]

Background: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. Aim: To determine the feasibility of completing ICECAP–Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. Design: Participants were asked to ‘think aloud’ while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. Setting/participants: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). Results: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. Conclusions: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete. [ABSTRACT FROM AUTHOR]

Background: Terminally ill patients at the end-of-life do transit between care settings due to their complex care needs. Problems of care fragmentation could result in poor quality of care. Aim: We aimed to evaluate the impact of an integrated hospice home care programme on acute care service usage and on the share of home deaths. Settings/participants: The retrospective study cohort comprised patients who were diagnosed with cancer, had an expected prognosis of 1 year or less, and were referred to a home hospice. The intervention group comprised deceased patients enrolled in the integrated hospice home care programme between September 2012 and June 2014. The historical comparison group comprised deceased patients who were referred to other home hospices between January 2007 and January 2011. Results: There were 321 cases and 593 comparator subjects. Relative to the comparator group, the share of hospital deaths was significantly lower for programme participants (12.1% versus 42.7%). After adjusting for differences at baseline, the intervention group had statistically significantly lower emergency department visits at 30 days (incidence rate ratio: 0.38; 95% confidence interval: 0.31–0.47), 60 days (incidence rate ratio: 0.61; 95% confidence interval: 0.54–0.69) and 90 days (incidence rate ratio: 0.69; 95% confidence interval: 0.62–0.77) prior to death. Similar results held for the number of hospitalisations at 30 days (incidence rate ratio: 0.48; 95% confidence interval: 0.40–0.58), 60 days (incidence rate ratio: 0.71; 95% confidence interval: 0.62–0.82) and 90 days (incidence rate ratio: 0.77; 95% confidence interval: 0.68–0.88) prior to death. Conclusion: Our results demonstrated that by integrating services between acute care and home hospice care, a reduction in acute care service usage could occur. [ABSTRACT FROM AUTHOR]

Background: Amyotrophic lateral sclerosis is a progressive debilitating and lethal disorder, characterized by degeneration of motor neurons that warrant palliative care. Pain is frequent in patients with amyotrophic lateral sclerosis and significantly impacts on quality of life. Aim: To describe pain and assess the prevalence of pain with neuropathic characteristics in patients with amyotrophic lateral sclerosis. Design: Cross-sectional survey from March 2009 to October 2013. Setting/participants: Amyotrophic lateral sclerosis patients underwent multidisciplinary assessment and completed questionnaires measuring the severity and impact of pain and anxiety. The Douleur Neuropathique–4 questionnaire was used to look for pain with neuropathic characteristics. Results: Of 96 clinical evaluations, 93 were usable for analysis (age at onset: 62 ± 12.5 years; disease duration: 34 ± 33 months). The overall pain prevalence was 66%, with 9% experiencing pain with neuropathic characteristics. Pain was most often located in the neck and shoulders (38% of pain patients). Neck and shoulder pain was associated with neck (p = 0.04) and proximal upper limb muscular weakness (p = 0.02), respectively. Pain was not associated with disease duration, respiratory or nutritional parameters, but with higher anxiety scores (p = 0.01). Patients with neuropathic characteristics pain did not differ significantly from patients with or without pain, except that they had higher minimal pain intensity score (p < 0.05). Neuropathic characteristics pain was frequently spontaneous (rarely evoked) and described as numbness, burning, electric shock, tingling, and pins-and-needle. Conclusion: Even if amyotrophic lateral sclerosis is a disease of the motor system, pain is frequent and can rarely have neuropathic characteristics. Pain must be always sought and appropriately treated to limit quality of life impairment. [ABSTRACT FROM AUTHOR]

Background: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual teleconsultations could be a method for integrating palliative care services. Aim: This study aims to describe (1) whether and how teleconsultation supports the integration of primary care, specialist palliative care, and patient perspectives and services and (2) how patients and (in)formal caregivers experience collaboration in a teleconsultation approach. Design: This work consists of a qualitative study that utilizes long-term direct observations and in-depth interviews. Setting/participants: A total of 18 home-based palliative care patients (16 with cancer, 2 with chronic obstructive pulmonary disease; age range 24–85 years old), 12 hospital-based specialist palliative care team clinicians, and 17 primary care physicians. Results: Analysis showed that the introduction of specialist palliative care team-patient teleconsultation led to collaboration between primary care physicians and specialist palliative care team clinicians in all 18 cases. In 17/18 cases, interprofessional contact was restricted to backstage work after teleconsultation. In one deviant case, both the patient and the professionals were simultaneously connected through teleconsultation. Two themes characterized integrated palliative care at home as a consequence of teleconsultation: (1) professionals defining responsibility and (2) building interprofessional rapport. Conclusion: Specialist palliative care team teleconsultation with home-based patients leads to collaboration between primary care physicians and hospital-based palliative care specialists. Due to cultural reasons, most collaboration was of a multidisciplinary character, strongly relying on organized backstage work. Interdisciplinary teleconsultations with real-time contact between patient and both professionals were less common but stimulated patient-centered care dialogues. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced cancer often have to make difficult decisions, such as how much to spend on moderately life-extending treatments. This and other end-of-life decisions are also influenced by their informal caregivers. Understanding the relative value that patients and their caregivers place on various aspects of end-of-life care can help clinicians tailor treatments to best meet the preferences of their patients. Aim: To quantify willingness to pay of patients with advanced cancer and their caregivers to extend the patients’ life by 1 year and to compare this result to their willingness to pay for other end-of-life improvements. Design: Cross-sectional survey using a discrete choice experiment. Participants: A total of 211 patients with stage IV cancer and their informal caregivers. Results: The willingness to pay of patients to extend their life by 1 year (S$18,570; 95% confidence interval: S$6687–S$30,542) was not statistically different from their willingness to pay to avoid severe pain (S$22,199; S$11,648–S$32,450), to die at home (S$31,256; S$21,249–S$41,391), not be a burden on family and friends (S$4051; −S$3543 to S$11,568), or to receive a high-quality health-care experience (S$16,191; S$9266–S$23,037). Consistent with our hypothesis, caregivers had a greater willingness to pay than patients to extend life (S$61,368; S$37,030–S$86,210) and for most other end-of-life improvements. Conclusion: Results highlight the importance of pain management, supporting home deaths, and addressing other end-of-life concerns, in addition to efforts to extend life. Differences in willingness to pay of patients and caregivers suggest the need for eliciting patient preferences during treatment decision making as opposed to relying on caregiver input. [ABSTRACT FROM AUTHOR]

The article presents a study concerning pharmacologic therapeutic futility during the palliative care transition of a cancer patient. The study found that the absence of clinical indication, incorrect dosage or posology and clinically significant drug-disease or comorbidity interactions are the main causes of pharmacologic therapeutic futility. Details on the results, design and methods of the study are given.

The article focuses on a study which reviewed the characteristics, interventions, and outcomes of lung transplant patients referred for co-management by palliative care to identify whether they safely received opioids and went on to transplantation. It notes that palliative care and opioids can be safely provided without compromising eligibility for transplantation. Details of the study, along with the design and participants and conclusion, are discussed.

The article discusses a study conducted to describe the use of goals of care meetings in patients with advanced or refractory cancer at risk for critical care interventions. Topics discussed include study design and analysis of study, goals of care meetings in providing usual care team and palliative care, and improving concordance between patients' preferences and health care utilization.

The article discusses a pre-test and post-test study of the physical and psychological impact of out-of home respite care on caregivers of children with life-threatening illnesses. The study included a consecutive sample of 58 parental caregivers of children who were admitted to a children's hospice for out-of-home respite. Results showed the effectiveness of out-of-home respite care in improving physical and psychological adjustment of caregivers.

The article discusses a study using mixed methods on ensuing selection bias and non-invitation of eligible families in an interview study of the experiences of parents about advance care planning (ACP). Authors of the study examined the differences between not invited and eligible families participating in the study. Results showed the evidence of selective invitation practices that could bias research outcomes.

The article discusses a study which examines the practices, expectations, and confidence levels of clinicians in discussing end-of-life (EOL) care to patients with heart failure (HF). Topics include conducting a multi-site clinician survey, the advocacy of the American Heart Association for EOL care, and the Mayo Clinic Institutional Review Board (IRB) which reviews the study protocol on EOL care.

The article discusses a study which investigates the perspective of health care professionals on pediatric advance care planning. Topics include conducting an interview with pediatric end-of-life care experts, the perceived problems and conflicts associated with such care planning, and identifying the barriers to the implementation advance care planning.

The article presents a study which evaluates the reliability and feasibility of a set of quality indicators (QIs) in palliative care settings and services across Europe. Among the methods used are descriptive statistics, chi-square analysis, and analysis of variance. It shows that the set of QIs seemed to measure four reliable domains including equipment and continuity of care, personnel training and appraisal, and availability of controlled drugs.

The article offers information on a study which explore the role of District Nurse (DN) in stating the patient's transition towards the dying phase. It mentions that qualitative focus group methodology was used to examine the perspectives of DNs. It shows that proper timing of conversation is the most significant preparation for a good death.

The article offers information on a study which describe the preparatory strategies of hospice clinicians in preparing family member for the final days of life of hospice patient. It mentions that qualitative descriptive study, individual interviews, and conventional content analysis were used to guide the study. It shows that careful listening to the family, engendering trust, and repetition of the preparation are among the effective strategy for hospice clinicians.

The article presents information on a study on the role of doctors in helping dying cancer patients to achieve peace. The study aimed at understanding the features of a peaceful patient and preferences of patients about the role of the doctor in facilitating peace. The study was conducted on 15 dying cancer patients. It is concluded that communication from doctors on prognosis can promote spiritual well-being in cancer patients.

The article presents a study which seeks to determine the determinants and indications of consultation for palliative care in trauma intensive care units. A survey of trauma surgeons was conducted to understand the indications, barriers and benefits perceived by trauma surgeons when consulting palliative care. The survey results showed that palliative care is underused, and the identified barriers give important opportunities to further appropriate use of palliative care services.

The article presents a study aimed to describe and evaluate the end-of-life care for Dutch patients who died from cancer, organ failure and old age or dementia by general practitioners. The study was conducted through a cross-sectional and a retrospective within a sentinel network of general practitioners. The results of the study reveal the need to integrate palliative care accompanied by optimal disease management.

The article discusses the results of the study on the participation in and evaluation of Dignity Therapy in advanced cancer patients who are undergoing palliative care. It details how the study was conducted which involved cancer patients with incurable cancer and who were informed of their prognosis. The results reportedly revealed that Dignity Therapy is an important palliative care intervention.

The article discusses the results of the self-completion post-bereavement survey on the reported preferences for place of death and experiences of end-of-life care in England. It details how the study was conducted which involved bereaved relatives who were asked to complete a questionnaire six to 12 months post-bereavement. The results reportedly revealed that only 13.3% of the 73.9% of deceased who wanted to die at their homes were able to achieve it.

The article discusses the results of the retrospective cohort study on the effectiveness of palliative home-care services in reducing admissions in hospitals and the factors that could predict possible hospitalization of terminally ill patients. It details how the study was conducted which involved 402 patients in Italy who were listed as dying of cancer in 2011. The results reportedly revealed that palliative home-care service is effective in reducing hospitalizations.

The article discusses the study which determines if increasing anticholinergic burden was associated with a delirium increased among palliative care inpatients. The study involves 217 veterans who were admitted to the Veterans Affairs Boston Healthcare System in Massachusetts and assessed through Anticholinergic Risk Scale. Result shows that delirium risk in patient with an Anticholinergic Risk Scale remained higher compared to patients without increase.

Background: Validated quality indicators can help health-care professionals to evaluate their medical practices in a comparativemanner to deliver optimal clinical care. No international set of quality indicators to measure the organizational aspects of palliativecare settings exists.Aim: To develop and validate a set of structure and process indicators for palliative care settings in Europe.Design: A two-round modified RAND Delphi process was conducted to rate clarity and usefulness of a previously developed set of110 quality indicators.Setting/participants: In total, 20 multi-professional palliative care teams of centers of excellence from seven European countries.Results: In total, 56 quality indicators were rated as useful. These valid quality indicators concerned the following domains: thedefinition of a palliative care service (2 quality indicators), accessibility to palliative care (16 quality indicators), specific infrastructureto deliver palliative care (8 quality indicators), symptom assessment tools (1 quality indicator), specific personnel in palliative careservices (9 quality indicators), documentation methodology of clinical data (14 quality indicators), evaluation of quality and safetyprocedures (1 quality indicator), reporting of clinical activities (1 quality indicator), and education in palliative care (4 quality indicator).Conclusion: The modified RAND Delphi process resulted in 56 international face-validated quality indicators to measure andcompare organizational aspects of palliative care. These quality indicators, aimed to assess and improve the organization of palliativecare, will be pilot tested in palliative care settings all over Europe and be used in the EU FP7 funded IMPACT project. [ABSTRACT FROM AUTHOR]

Background: Why do many patients not die at their preferred location?Aim: Analyze system-level characteristics influencing the ability to implement best practices in delivering care for terminally ill adults(barriers and facilitators).Design: Cross-country comparison study from a "most similar-most different" perspective, triangulating evidence from a scopingreview of the literature, document analyses, and semi-structured key informant interviews.Setting: Case study of Canada, England, Germany, and the United States.Results: While similar with regard to leading causes of death, patient needs, and potential avenues to care, different models ofservice provision were employed in the four countries studied. Although hospice and palliative care services were generally offeredwith standard care along the disease continuum and in various settings, and featured common elements such as physical, psychosocial,and spiritual care, outcomes (access, utilization, etc.) varied across jurisdictions. Barriers to best practice service provisionincluded legislative (including jurisdictional), regulatory (e.g. education and training), and financial issues as well as public knowledgeand perception ("giving up hope") challenges. Advance care planning, dedicated and stable funding toward hospice and palliative care,including caregiver benefits, population aging, and standards of practice and guidelines to hospice and palliative care, were identifiedas facilitators.Conclusion: Successful implementation of effective and efficient best practice approaches to care for the terminally ill, such as sharedcare, requires concerted action to align these system-level characteristics; many factors were identified as being essential but notsufficient. Policy implementation needs to be tailored to the respective health-care system(s), monitored, and fine-tuned. [ABSTRACT FROM AUTHOR]