搜索结果：Current opinion in supportive and palliative care

Integrated kidney care requires synergistic linkage between preventative care for people at risk for chronic kidney disease and health services providing care for people with kidney disease, ensuring holistic and coordinated care as people transition between acute and chronic kidney disease and the 3 modalities of kidney failure management: conservative kidney management, transplantation, and dialysis. People with kidney failure have many supportive care needs throughout their illness, regardless of treatment modality. Kidney supportive care is therefore a vital part of this integrated framework, but is nonexistent, poorly developed, and/or poorly integrated with kidney care in many settings, especially in low- and middle-income countries. To address this, the International Society of Nephrology has (i) coordinated the development of consensus definitions of conservative kidney management and kidney supportive care to promote international understanding and awareness of these active treatments; and (ii) identified key considerations for the development and expansion of conservative kidney management and kidney supportive care programs, especially in low resource settings, where access to kidney replacement therapy is restricted or not available. This article presents the definitions for conservative kidney management and kidney supportive care; describes their core components with some illustrative examples to highlight key points; and describes some of the additional considerations for delivering conservative kidney management and kidney supportive care in low resource settings. Integrated kidney care requires synergistic linkage between preventative care for people at risk for chronic kidney disease and health services providing care for people with kidney disease, ensuring holistic and coordinated care as people transition between acute and chronic kidney disease and the 3 modalities of kidney failure management: conservative kidney management, transplantation, and dialysis. People with kidney failure have many supportive care needs throughout their illness, regardless of treatment modality. Kidney supportive care is therefore a vital part of this integrated framework, but is nonexistent, poorly developed, and/or poorly integrated with kidney care in many settings, especially in low- and middle-income countries. To address this, the International Society of Nephrology has (i) coordinated the development of consensus definitions of conservative kidney management and kidney supportive care to promote international understanding and awareness of these active treatments; and (ii) identified key considerations for the development and expansion of conservative kidney management and kidney supportive care programs, especially in low resource settings, where access to kidney replacement therapy is restricted or not available. This article presents the definitions for conservative kidney management and kidney supportive care; describes their core components with some illustrative examples to highlight key points; and describes some of the additional considerations for delivering conservative kidney management and kidney supportive care in low resource settings. As part of its focus on integrated care of people with kidney failure, the International Society of Nephrology (ISN) brought together patients with kidney failure, health care professionals, researchers, academic and health care institutions, and policy makers to formulate a 5- to 10-year strategy to improve global access to safe, sustainable, and equitable integrated care for people with kidney failure. “Integrated kidney care” requires synergistic linkage between preventative care for people at risk for chronic kidney disease and health services providing care for people with kidney disease, ensuring holistic and coordinated care as people transition between acute and chronic kidney disease and the 3 modalities of kidney failure management: conservative kidney management (CKM), transplantation, and dialysis.1Harris D.C.H. Davies S.J. Finkelstein F.O. et al.Increasing access to integrated ESKD care as part of universal health coverage.Kidney Int. 2019; 95: S1-S33Abstract Full Text Full Text PDF PubMed Scopus (102) Google Scholar People with kidney failure have many supportive care needs throughout their illness; kidney supportive care (KSC) is therefore a vital part of this integrated framework to address these needs regardless of treatment modality. Action plans were categorized into 5 themes and workgroups: monitor, dialysis, resources, transplantation, and conservative kidney management and kidney supportive care.2Harris D.C.H. Davies S.J. Finkelstein F.O. et al.Strategic plan for integrated care of patients with kidney failure.Kidney Int. 2020; 98: S117-S134Abstract Full Text Full Text PDF PubMed Google Scholar The aim of the CKM/KSC Workgroup is to define key considerations for the development and expansion of CKM and KSC as core components of integrated kidney care. This will involve identification of countries with no or limited services and training programs and development of materials and pathways for implementation of sustainable CKM and KSC programs. Through a series of consensus meetings, the workgroup will perform its activities within 4 projects that have been revised since the initial publication of the strategic plan, outlined in Box 1.2Harris D.C.H. Davies S.J. Finkelstein F.O. et al.Strategic plan for integrated care of patients with kidney failure.Kidney Int. 2020; 98: S117-S134Abstract Full Text Full Text PDF PubMed Google Scholar,3Bello A.K. Levin A. Lunney M. et al.Status of care for end stage kidney disease in countries and regions worldwide: international cross sectional survey.BMJ (Clin Res ed). 2019; 367: l5873Crossref PubMed Scopus (0) Google Scholar Progress with these initial projects will define the direction of future activities.Box 1Activities of the ISN Conservative Kidney Management/Kidney Supportive Care Workgroup within the 5- to 10-year strategic plan for integrated care of people with kidney failure2Harris D.C.H. Davies S.J. Finkelstein F.O. et al.Strategic plan for integrated care of patients with kidney failure.Kidney Int. 2020; 98: S117-S134Abstract Full Text Full Text PDF PubMed Google ScholarTabled 1Project 1: Define and identify the core components of conservative kidney management and kidney supportive care to promote international understanding, awareness, and development.Project 2: Undertake an updated environmental scan of existing conservative kidney management programs (as part of the Global Kidney Health Atlas initiative)3Bello A.K. Levin A. Lunney M. et al.Status of care for end stage kidney disease in countries and regions worldwide: international cross sectional survey.BMJ (Clin Res ed). 2019; 367: l5873Crossref PubMed Scopus (0) Google Scholar that incorporates fully the considerations and elements in project 1.Project 3: Disseminate prognostic tools and information for patients and health care providers about the range of clinical outcomes of importance to people considering conservative kidney management.Project 4: Develop a global ISN (core) curriculum for conservative kidney management and kidney supportive care to promote training in these fields.Project 5: Support the development of conservative kidney management programs in places where they do not currently exist, particularly for low- and low middle-income countries. Open table in a new tab ISN, International Society of Nephrology. Tabled 1Project 1: Define and identify the core components of conservative kidney management and kidney supportive care to promote international understanding, awareness, and development.Project 2: Undertake an updated environmental scan of existing conservative kidney management programs (as part of the Global Kidney Health Atlas initiative)3Bello A.K. Levin A. Lunney M. et al.Status of care for end stage kidney disease in countries and regions worldwide: international cross sectional survey.BMJ (Clin Res ed). 2019; 367: l5873Crossref PubMed Scopus (0) Google Scholar that incorporates fully the considerations and elements in project 1.Project 3: Disseminate prognostic tools and information for patients and health care providers about the range of clinical outcomes of importance to people considering conservative kidney management.Project 4: Develop a global ISN (core) curriculum for conservative kidney management and kidney supportive care to promote training in these fields.Project 5: Support the development of conservative kidney management programs in places where they do not currently exist, particularly for low- and low middle-income countries. Open table in a new tab ISN, International Society of Nephrology. This article is the first deliverable for project 1, aimed at improving and standardizing descriptions of CKM and KSC; improving communication by stakeholders; promoting acceptance of CKM as a treatment for kidney failure; and promoting KSC as a core component of nephrology. Although we considered global issues across low- or middle-income countries (LMICs) and high-income countries, we prioritized LMICs and vulnerable populations in all countries. The specific goals of this article are to (i) define acceptable terminology to promote international understanding and awareness of CKM and KSC; (ii) describe key components of CKM and KSC; and (iii) discuss some key considerations for the development and expansion of CKM and KSC as core components of integrated care for people with kidney failure.4Davison S.N. on behalf of the Kidney Supportive Care Research GroupConservative kidney management care pathway.https://www.ckmcare.com/Date accessed: June 27, 2023Google Scholar, 5St. George Hospital and Community Health Services: renal supportive care.https://stgrenal.org.au/renal-supportivecareDate accessed: June 27, 2023Google Scholar, 6Brown M.A. Crail S.M. Masterson R. et al.ANZSN Renal Supportive Care Guidelines 2013.Nephrology. 2013; 18: 401-454Crossref PubMed Scopus (59) Google Scholar, 7Davison S.N. Levin A. Moss A.H. et al.Executive of the on Supportive Care in Kidney a to improving Int. 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PURPOSE: An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. CLINICAL CONTEXT: Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available. RECENT DATA: Seven published RCTs form the basis of this PCO. PROVISIONAL CLINICAL OPINION: Based on strong evidence from a phase III RCT, patients with metastatic non-small-cell lung cancer should be offered concurrent palliative care and standard oncologic care at initial diagnosis. While a survival benefit from early involvement of palliative care has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that palliative care-when combined with standard cancer care or as the main focus of care-leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden. Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel's expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, QOL, survival, health care services utilization, and costs) and on society, should be an area of intense research. NOTE: ASCO's provisional clinical opinions (PCOs) reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision making and identify questions and settings for further research. Because of the rapid flow of scientific information in oncology, new evidence may have emerged since the time a PCO was submitted for publication. PCOs are not continually updated and may not reflect the most recent evidence. PCOs cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any PCO is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances. ASCO PCOs describe the use of procedures and therapies in clinical trials and cannot be assumed to apply to the use of these interventions in the context of clinical practice. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's PCOs, or for any errors or omissions.

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

BACKGROUND: Clinical practice is not always evidence-based and, therefore, may not optimise patient outcomes. Opinion leaders disseminating and implementing 'best evidence' is one method that holds promise as a strategy to bridge evidence-practice gaps. OBJECTIVES: To assess the effectiveness of the use of local opinion leaders in improving professional practice and patient outcomes. SEARCH STRATEGY: We searched Cochrane EPOC Group Trials Register, the Cochrane Central Register of Controlled Trials, MEDLINE, EMBASE, HMIC, Science Citation Index, Social Science Citation Index, ISI Conference Proceedings and World Cat Dissertations up to 5 May 2009. In addition, we searched reference lists of included articles. SELECTION CRITERIA: Studies eligible for inclusion were randomised controlled trials investigating the effectiveness of using opinion leaders to disseminate evidence-based practice and reporting objective measures of professional performance and/or health outcomes. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data from each study and assessed its risk of bias. For each trial, we calculated the median risk difference (RD) for compliance with desired practice, adjusting for baseline where data were available. We reported the median adjusted RD for each of the main comparisons. MAIN RESULTS: We included 18 studies involving more than 296 hospitals and 318 PCPs. Fifteen studies (18 comparisons) contributed to the calculations of the median adjusted RD for the main comparisons. The effects of interventions varied across the 63 outcomes from 15% decrease in compliance to 72% increase in compliance with desired practice. The median adjusted RD for the main comparisons were: i) Opinion leaders compared to no intervention, +0.09; ii) Opinion leaders alone compared to a single intervention, +0.14; iii) Opinion leaders with one or more additional intervention(s) compared to the one or more additional intervention(s), +0.10; iv) Opinion leaders as part of multiple interventions compared to no intervention, +0.10. Overall, across all 18 studies the median adjusted RD was +0.12 representing a 12% absolute increase in compliance in the intervention group. AUTHORS' CONCLUSIONS: Opinion leaders alone or in combination with other interventions may successfully promote evidence-based practice, but effectiveness varies both within and between studies. These results are based on heterogeneous studies differing in terms of type of intervention, setting, and outcomes measured. In most of the studies the role of the opinion leader was not clearly described, and it is therefore not possible to say what the best way is to optimise the effectiveness of opinion leaders.

The European Society of Intensive Care Medicine (ESICM) has developed evidence-based recommendations and expert opinions about end-of-life (EoL) and palliative care for critically ill adults to optimize patient-centered care, improving outcomes of relatives, and supporting intensive care unit (ICU) staff in delivering compassionate and effective EoL and palliative care. An international multi-disciplinary panel of clinical experts, a methodologist, and representatives of patients and families examined key domains, including variability across countries, decision-making, palliative-care integration, communication, family-centered care, and conflict management. Eight evidence-based recommendations (6 of low level of evidence and 2 of high level of evidence) and 19 expert opinions were presented. EoL legislation and the importance of respecting the autonomy and preferences of patients were given close attention. Differences in EoL care depending on country income and healthcare provision were considered. Structured EoL decision-making strategies are recommended to improve outcomes of patients and relatives, as well as staff satisfaction and mental health. Early integration of palliative care and the use of standardized tools for symptom assessment are suggested for patients at high risk of dying. Communication training for ICU staff and printed communication aids for families are advocated to improve outcomes and satisfaction. Methods for enhancing family-centeredness of care include structured family conferences and culturally sensitive interventions. Conflict-management protocols and strategies to prevent burnout among healthcare professionals are also considered. The work done to develop these guidelines highlights many areas requiring further research.

IMPORTANCE: Patients with acute myeloid leukemia (AML) receiving intensive chemotherapy experience substantial decline in their quality of life (QOL) and mood during their hospitalization for induction chemotherapy and often receive aggressive care at the end of life (EOL). However, the role of specialty palliative care for improving the QOL and care for this population is currently unknown. OBJECTIVE: To assess the effect of integrated palliative and oncology care (IPC) on patient-reported and EOL outcomes in patients with AML. DESIGN, SETTING, AND PARTICIPANTS: We conducted a multisite randomized clinical trial of IPC (n = 86) vs usual care (UC) (n = 74) for patients with AML undergoing intensive chemotherapy. Data were collected from January 2017 through July 2019 at 4 tertiary care academic hospitals in the United States. INTERVENTIONS: Patients assigned to IPC were seen by palliative care clinicians at least twice per week during their initial and subsequent hospitalizations. MAIN OUTCOMES AND MEASURES: Patients completed the 44-item Functional Assessment of Cancer Therapy-Leukemia scale (score range, 0-176) to assess QOL; the 14-item Hospital Anxiety and Depression Scale (HADS), with subscales assessing symptoms of anxiety and depression (score range, 0-21); and the PTSD Checklist-Civilian version to assess posttraumatic stress disorder (PTSD) symptoms (score range, 17-85) at baseline and weeks 2, 4, 12, and 24. The primary end point was QOL at week 2. We used analysis of covariance adjusting and mixed linear effect models to evaluate patient-reported outcomes. We used Fisher exact test to compare patient-reported discussion of EOL care preferences and receipt of chemotherapy in the last 30 days of life. RESULTS: Of 235 eligible patients, 160 (68.1%) were enrolled; of the 160 participants, the median (range) age was 64.4 (19.7-80.1) years, and 64 (40.0%) were women. Compared with those receiving UC, IPC participants reported better QOL (adjusted mean score, 107.59 vs 116.45; P = .04), and lower depression (adjusted mean score, 7.20 vs 5.68; P = .02), anxiety (adjusted mean score, 5.94 vs 4.53; P = .02), and PTSD symptoms (adjusted mean score, 31.69 vs 27.79; P = .01) at week 2. Intervention effects were sustained to week 24 for QOL (β, 2.35; 95% CI, 0.02-4.68; P = .048), depression (β, -0.42; 95% CI, -0.82 to -0.02; P = .04), anxiety (β, -0.38; 95% CI, -0.75 to -0.01; P = .04), and PTSD symptoms (β, -1.43; 95% CI, -2.34 to -0.54; P = .002). Among patients who died, those receiving IPC were more likely than those receiving UC to report discussing EOL care preferences (21 of 28 [75.0%] vs 12 of 30 [40.0%]; P = .01) and less likely to receive chemotherapy near EOL (15 of 43 [34.9%] vs 27 of 41 [65.9%]; P = .01). CONCLUSIONS AND RELEVANCE: In this randomized clinical trial of patients with AML, IPC led to substantial improvements in QOL, psychological distress, and EOL care. Palliative care should be considered a new standard of care for patients with AML. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02975869.

BACKGROUND: The choice between palliative chemotherapy (defined as the use of cytotoxic medications delivered intravenously for the purpose of our study) and supportive care alone is one of the most difficult decisions in pediatric oncology, yet little is known about the preferences of parents and health care professionals. We compared the strength of these preferences by considering children's quality of life and survival time as key attributes. In addition, we identified factors associated with the reported preferences. METHODS: We included parents of children whose cancer had no reasonable chance of being cured and health care professionals in pediatric oncology as participants in our study. We administered separate interviews to parents and to health care professionals. Visual analogue scales were shown to respondents to illustrate the anticipated level of the child's quality of life, the expected duration of survival and the probability of cure (shown only to health care professionals). Respondents were then asked which treatment option they would favour given these baseline attributes. In addition, respondents reported what factors might affect such a decision and ranked all factors identified in order of importance. The primary measure was the desirability score for supportive care alone relative to palliative chemotherapy, as obtained using the threshold technique. RESULTS: A total of 77 parents and 128 health care professionals participated in our study. Important factors influencing the decision between therapeutic options were child quality-of-life and survival time among both parents and health care professionals. Hope was particularly important to parents. Parents significantly favoured chemotherapy (42/77, 54.5%) compared with health care professionals (20/128, 15.6%; p < 0.0001). The opinions of the physician and child significantly influenced the parents' desire for supportive care; for health care professionals, the opinions of parents and children were significant factors influencing this decision. INTERPRETATION: Compared with health care professionals, parents more strongly favour aggressive treatment in the palliative phase and rank hope as a more important factor for making decisions about treatment. Understanding the differences between parents and health care professionals in the relative desirability of supportive care alone may aid in communication and improve end-of-life care for children with cancer.

BACKGROUND: Despite the significant benefits of palliative care (PC) services for cancer patients, multiple challenges hinder the provision of PC services for these patients. Low- and middle-income countries (LMICs) are witnessing a sharp growth in the burden of non-communicable diseases. There is a significant gap between demand and supply of PC in LMICs in current health services. This review aims to synthesise evidence from previous reviews and deliver a more comprehensive mapping of the existing literature about personal, system, policy, and organisational challenges and possible facilitators on the provision of PC services for cancer patients in LMICs. METHODS: A systematic review of reviews was performed following PRISMA guidelines. PubMed, EMBASE, SCOPUS, PsycINFO, Web of Sciences, CINAHL, and Cochrane Library databases were searched to identify review papers published between 2000 and 2018 that considered challenges and possible facilitators to PC provision. A modified socioecological model was used as a framework for analysing and summarising findings. RESULTS: Fourteen reviews were included. The reviews varied in terms of aim, settings, and detail of the challenges and possible facilitators. The main challenges of personal and health care systems included knowledge deficits and misunderstandings from patients, families, the general public, and health care providers about PC; and inadequate number of trained workforce. Besides, limited physical infrastructure, insufficient drugs for symptom relief and lack of a comprehensive national plan for implementing PC were the core organisational and policy level challenges that were recognised. Furthermore, the main possible facilitators that were identified included provision of adequate training for health care providers and health education for patients, families and the general public to enhance their knowledge, beliefs, and attitudes to PC. Finally, involvement of policymakers and making drugs available for symptom relief should also be in place to improve the health care systems. CONCLUSIONS: Understanding challenges to the provision of PC for people with cancer could help in the development of a PC pathway in LMICs. This knowledge could be used as a guide to develop an intervention programme to improve PC. Political influence and support are also required to ensure the sustainability and the provision of high-quality PC.

BACKGROUND AND PURPOSE: The purpose of this statement is to delineate basic expectations regarding primary palliative care competencies and skills to be considered, learned, and practiced by providers and healthcare services across hospitals and community settings when caring for patients and families with stroke. METHODS: Members of the writing group were appointed by the American Heart Association Stroke Council's Scientific Statement Oversight Committee and the American Heart Association's Manuscript Oversight Committee. Members were chosen to reflect the diversity and expertise of professional roles in delivering optimal palliative care. Writing group members were assigned topics relevant to their areas of expertise, reviewed the appropriate literature, and drafted manuscript content and recommendations in accordance with the American Heart Association's framework for defining classes and level of evidence and recommendations. RESULTS: The palliative care needs of patients with serious or life-threatening stroke and their families are enormous: complex decision making, aligning treatment with goals, and symptom control. Primary palliative care should be available to all patients with serious or life-threatening stroke and their families throughout the entire course of illness. To optimally deliver primary palliative care, stroke systems of care and provider teams should (1) promote and practice patient- and family-centered care; (2) effectively estimate prognosis; (3) develop appropriate goals of care; (4) be familiar with the evidence for common stroke decisions with end-of-life implications; (5) assess and effectively manage emerging stroke symptoms; (6) possess experience with palliative treatments at the end of life; (7) assist with care coordination, including referral to a palliative care specialist or hospice if necessary; (8) provide the patient and family the opportunity for personal growth and make bereavement resources available if death is anticipated; and (9) actively participate in continuous quality improvement and research. CONCLUSIONS: Addressing the palliative care needs of patients and families throughout the course of illness can complement existing practices and improve the quality of life of stroke patients, their families, and their care providers. There is an urgent need for further research in this area.

BACKGROUND: Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion. METHODS: The guidelines were developed via the following methods: (1) A literature review; (2) Conceptual framework; (3) Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia. RESULTS: The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented. CONCLUSION: Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined.

Background: Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. Aim: To explore palliative care stakeholders’ views on what makes a patient more or less complex and insights on capturing complexity at patient-level. Design: In-depth qualitative interviews, analysed using Framework analysis. Participants/setting: Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). Results: 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services’ respond to needs and societal perspectives on care. ‘Pre-existing’, ‘cumulative’ and ‘invisible’ complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner’s Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Conclusion: Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target resource provision in specialist palliative care.

BACKGROUND: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers. METHODS: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis. RESULTS: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants' initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as "ongoing care" that improved their "quality of living" but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting. INTERPRETATION: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful.

BACKGROUND: Outpatient palliative care clinics facilitate early referral and are associated with improved outcomes in cancer patients. However, appropriate candidates for outpatient palliative care referral and optimal timing remain unclear. We conducted a systematic review of the literature to identify criteria that are considered when an outpatient palliative cancer care referral is initiated. METHODS: We searched Ovid MEDLINE (1948-2013 citations) and Ovid Embase (1947-2015 citations) for articles related to outpatient palliative cancer care. Two researchers independently reviewed each citation for inclusion and extracted the referral criteria. The interrater agreement was high (κ = 0.96). RESULTS: Of the 186 publications in our initial search, 21 were included in the final sample. We identified 20 unique referral criteria. Among these, 6 were recurrent themes, which included physical symptoms (n = 13 [62%]), cancer trajectory (n = 13 [62%]), prognosis (n = 7 [33%]), performance status (n = 7 [33%]), psychosocial distress (n = 6 [29%]), and end-of-life care planning (n = 5 [24%]). We found significant variations among the articles regarding the definition of advanced cancer and the assessment tools for symptom/distress screening. The Edmonton Symptom Assessment Scale (n = 7 [33%]) and the distress thermometer (n = 2 [10%]) were used most often. Furthermore, there was a lack of consensus in the cutoffs in symptom assessment tools and timing for outpatient palliative care referral. CONCLUSION: This systematic review identified 20 criteria including 6 recurrent themes for outpatient cancer palliative care referral. It highlights the significant heterogeneity regarding the timing and process for referral and the need for further research to develop standardized referral criteria. IMPLICATIONS FOR PRACTICE: Outpatient palliative care clinics improve patient outcomes; however, it remains unclear who is appropriate for referral and what is the optimal timing. A better understanding of the referral criteria would help (a) referring clinicians to identify appropriate patients for palliative care interventions, (b) administrators to assess their programs with set benchmarks for quality improvement, (c) researchers to standardize inclusion criteria, and (d) policymakers to develop clinical care pathways and allocate appropriate resources. This systematic review identified 20 criteria including 6 recurrent themes for outpatient palliative cancer care referral. It represents the first step toward developing standardized referral criteria.

BACKGROUND: Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families. OBJECTIVE: To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines. DESIGN: An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014-15), 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not. RESULTS: More people with cancer (64%) had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4-10%). The support for family caregivers before and after their relative's death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3-6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as "not personal" or "generic", or "just standard practice". CONCLUSIONS: Timeliness and consistency of relationship is crucial to building rapport and trust in the service's ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in assessing and supporting family caregivers during the pre-bereavement period and developing community capacity and referral pathways for bereavement care. Our findings suggest that bereavement support in Australian palliative care services has only a tenuous relationship with guidelines and assessment tools, a conclusion also drawn in studies from other countries, emphasizing the international implications of our study.

CONTEXT: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. METHODS: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. FINDINGS: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. CONCLUSIONS: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions.

BACKGROUND: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. AIM: To define optimal palliative care in dementia. METHODS: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. RESULTS: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. CONCLUSION: We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

BACKGROUND: Prognostic accuracy in palliative care is valued by patients, carers, and healthcare professionals. Previous reviews suggest clinicians are inaccurate at survival estimates, but have only reported the accuracy of estimates on patients with a cancer diagnosis. OBJECTIVES: To examine the accuracy of clinicians' estimates of survival and to determine if any clinical profession is better at doing so than another. DATA SOURCES: MEDLINE, Embase, CINAHL, and the Cochrane Database of Systematic Reviews and Trials. All databases were searched from the start of the database up to June 2015. Reference lists of eligible articles were also checked. INCLUSION CRITERIA: patients over 18, palliative population and setting, quantifiable estimate based on real patients, full publication written in English. EXCLUSION CRITERIA: if the estimate was following an intervention, such as surgery, or the patient was artificially ventilated or in intensive care. STUDY APPRAISAL AND SYNTHESIS METHODS: A quality assessment was completed with the QUIPS tool. Data on the reported accuracy of estimates and information about the clinicians were extracted. Studies were grouped by type of estimate: categorical (the clinician had a predetermined list of outcomes to choose from), continuous (open-ended estimate), or probabilistic (likelihood of surviving a particular time frame). RESULTS: 4,642 records were identified; 42 studies fully met the review criteria. Wide variation was shown with categorical estimates (range 23% to 78%) and continuous estimates ranged between an underestimate of 86 days to an overestimate of 93 days. The four papers which used probabilistic estimates tended to show greater accuracy (c-statistics of 0.74-0.78). Information available about the clinicians providing the estimates was limited. Overall, there was no clear "expert" subgroup of clinicians identified. LIMITATIONS: High heterogeneity limited the analyses possible and prevented an overall accuracy being reported. Data were extracted using a standardised tool, by one reviewer, which could have introduced bias. Devising search terms for prognostic studies is challenging. Every attempt was made to devise search terms that were sufficiently sensitive to detect all prognostic studies; however, it remains possible that some studies were not identified. CONCLUSION: Studies of prognostic accuracy in palliative care are heterogeneous, but the evidence suggests that clinicians' predictions are frequently inaccurate. No sub-group of clinicians was consistently shown to be more accurate than any other. IMPLICATIONS OF KEY FINDINGS: Further research is needed to understand how clinical predictions are formulated and how their accuracy can be improved.

BACKGROUND: Telehealth is growing and its application in palliative care is seen as a solution to pressures on palliative care services. A 2010 UK review reported growing awareness of telehealth in palliative care but a lack of evidence-based research to support its use. The primary aim of this review was to describe the current use of telehealth in palliative care in the UK and evaluate telehealth initiatives against a digital service standard. The secondary aim was to explore whether telehealth results in a reduction in emergency care access. METHODS: Systematic review of the literature with thematic synthesis. Records were screened and data extracted by two reviewers. EMBASE, MEDLINE, CINAHL, Psychinfo and Cochrane central register for controlled trials were searched using pre-defined terms. Hand searching of conference literature, thesis databases and citation tracking was also conducted. The protocol for this systematic review was registered with PROSPERO and can be found at http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42017080038. RESULTS: The search identified 3807 titles and 30 studies were included in the review. Telehealth was used to support patients and carers, electronic record keeping and professional education. Notably, the number of home telemonitoring initiatives for patients had increased from the 2010 review. Despite this variety, many studies were small scale, descriptive and provided little evidence of evaluation of the service. Ten papers were sufficiently detailed to allow appraisal against the digital service standard and only one of these met all of the criteria to some extent. Seven studies made reference to emergency care access. CONCLUSIONS: Although there is growth of telehealth services, there remains a lack of evaluation and robust study design meaning conclusions regarding the clinical application of telehealth in palliative care cannot be drawn. There is insufficient evidence to appreciate any benefit of telehealth on access to emergency care. Future work is needed to evaluate the use of telehealth in palliative care and improve telehealth design in line with digital service standards.