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Background: Palliative care is characterised by heterogeneous patient and caregiver populations who are provided care in different health systems and a research base including a large proportion of observational, mostly retrospective studies. The inherent diversity of palliative care populations and the often inadequate study descriptions challenge the application of new knowledge into practice and reproducibility for confirmatory studies. Being able to define systematically study populations would significantly increase their generalisability and effective translation into practice., Proposal: Based on an informal consensus process by active palliative care researchers challenged by this problem and a review of the current evidence, we propose an approach to creating more comparable cohorts in observational (non-randomised) palliative care studies that relies on defining the study population in relation to a fixed, well-defined event from which analyses are built ('anchoring'). In addition to providing a detailed and complete description of the study population, anchoring is the critical step in creating more comparable cohorts in observational palliative care studies. Anchoring can be done with respect to a single or multiple data points, and can support both prospective and retrospective data collection and analysis., Discussion: Anchoring the cohort to reproducible data points will help create more comparable cohorts in palliative care whilst mitigating its inherent heterogeneity. This, in turn, will help optimise the generalisability, applicability and reproducibility of observational palliative care studies to strengthen the evidence base and improve practice., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: To describe the current, real-world use of non-steroidal anti-inflammatory drugs for pain and the associated benefits and harms., Methods: A prospective, multicentre, consecutive cohort pharmacovigilance study conducted at 14 sites across Australia, Aotearoa/New Zealand and the UK including hospital, hospice inpatient and outpatient services. Pain scores and harms were graded using the National Cancer Institute Common Terminology Criteria for Adverse Events at baseline, 2 days and 14 days. Ad-hoc safety reporting continued until day 28., Results: Data were collected from 92 patients between March 2018 and October 2021. Most patients had cancer (91%) and were coprescribed opioids (90%). At 14 days, 83% of patients had benefit from non-steroidal anti-inflammatory drugs and 22% had harm. The most common harms were nausea (8%), vomiting (3%), acute kidney injury (3%) and non-gastrointestinal bleeding (3%); only 2% were severe and no patients ceased their non-steroidal anti-inflammatory drugs due to toxicity. Overall, 65% had benefit without harm and 3% had harm without benefit., Conclusions: Most patients benefited from non-steroidal anti-inflammatory drugs with only one in five patients experiencing tolerable harm. This suggests that short-term use of non-steroidal anti-inflammatory drugs in patients receiving palliative care is safer than previously thought and may be underused., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Migrant Australians with cancer have higher unmet needs and poorer health-related quality of life. Less is known about their palliative care experience. We aimed to assess comparative symptom distress and problem severity for culturally and linguistically diverse Australians with cancer in palliative care., Methods: This was a retrospective, consecutive cohort study using data from the Palliative Care Outcomes Collaboration, which routinely collects standardised symptom assessments nationally at point-of-care. Adults with a cancer diagnosis who died 01/01/2016-31/12/2019 were included. The presence/absence of patient-reported symptom distress and clinician-rated problem severity were compared between people who preferred English and people who preferred another language using logistic regression models. We also compared people who preferred English and the four most common non-English languages in the dataset: Chinese, Greek, Italian and Slavic., Results: A total of 53 964 people with cancer died within the study period, allowing analysis of 104 064 assessments. People preferring non-English languages were less likely to report symptoms (pain: OR=0.89 (0.84 to 0.94); all other symptoms except fatigue OR<1 and CIs did not contain 1). Except for family/carer problems (OR=1.24 (1.12 to 1.31)), linguistically diverse people were less likely to report problems. Variation was seen between non-English language groups., Conclusions: We did not find evidence of comparatively worse symptom distress or problem severity for nearly all scores for culturally and linguistically diverse Australians. Better symptom management or differential reporting may explain this. It is important to examine this further, including assessing differences within cultural and linguistic groups to ensure the delivery of high-quality palliative care., Competing Interests: Competing interests: JR reports personal fees from Amgen and consultancy with the University of Birmingham Enterprise, outside the submitted work., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: To describe the harms in all arms of six consecutive multi-site, double-blind, placebo-controlled randomised clinical trials. Background: Controversies surround conduct of phase III clinical trials in palliative care. Concerns include risks to participants' safety, use of placebo arms, participants' burden, and justification when therapies are already widely used. Methods: This study collates safety data of the first six studies of the Australian national Palliative Care Clinical Studies Collaborative. On an intention-to-treat basis, all harms are described using standard international definitions, their severity, outcomes, and level of attribution. Results: Studies recruited 1,232 participants: 65/1,232 (5.3%) participants had serious adverse events of which none had a definite (blinded) attribution, all of which settled with ceasing the intervention; 49/1,232 (4.0%) participants had adverse events. No participants on placebo arms had adverse or serious adverse events with definite (blinded) attribution. Discussion: These studies are safe for participants and generate knowledge to support informed patient decision making.

Background: Hospice/palliative care emphasizes excellent care for patients, but what about longer-term caregiver outcomes after their caregiving role? What is the role of services in working to ensure that caregivers can re-engage with all aspects of life, including paid employment given that this is an identified stressor for caregivers? Aim: This hypothesis-generating study aimed to explore self-reported, post-care workforce participation, and any association with hospice/palliative care contact. Design: Cross-sectional random population interviews. Setting/Participants: People in the general population were randomly selected for face-to-face interviews about well-being including end-of-life care in South Australia. Questions included experiences of people dying an expected death and whether interviewees provided care. Demographic data included current workforce participation. A regression model explored associations with workforce participation. Results: Of 8945 interviews over three years, 171 participants aged 20-60 years (working age) provided intermittent hands-on care: two in five were men and two in three had qualifications beyond high school; one in two decedents had accessed palliative care services. Reflecting the bivariable analyses, logistic regression models showed associations with workforce participation and: being male (odds ratio [OR] 6.71); use of palliative care services (OR 4.85); and higher levels of education (OR 3.54). Conclusion: An association between workforce participation after caregiving ceased and the use of palliative care services was described, controlling for key factors. Reasons may include continued working, greater rates of return to work, earlier return to work or that people in the workforce are more likely to access services.

Introduction: Persistent breathlessness (breathlessness persisting despite optimal treatment for the underlying condition and resulting in disability) is a prevalent syndrome associated with chronic and life-limiting conditions. Improving the clinical recognition and assessment of persistent breathlessness is essential to ensure people are provided with the best treatment for optimal symptom control., Areas Covered: This overview focuses on the impact of persistent breathlessness on patients, carers and the health system. It highlights the importance of identifying persistent breathlessness in clinical consultations, suggests steps to recognize this syndrome and discusses the evidence for non-pharmacological and pharmacological treatments in this context. Future research directions are also suggested., Expert Opinion: Persistent breathlessness is often invisible because 1) people may not engage with the health system and 2) both clinicians and patients are reluctant to discuss breathlessness in clinical consultations. Improving the recognition and assessment of this syndrome is critical to facilitate meaningful conversations between patients and clinicians and ensure patient-centered care. Non-pharmacological strategies are key to improving symptom management and health outcomes. Regular, low-dose, sustained-release morphine may help further reduce breathlessness in people who remain symptomatic despite disease-specific and non-pharmacological therapies.

There are several methodological challenges when conducting randomised controlled trials in palliative care. These include worsening function and high mortality, leading to treatment discontinuation, some of which will be unrelated to the intervention being evaluated.Recently, a new framework for handling postrandomisation events, such as attrition, has been released. This framework aims to align trial objectives, design, conduct and analysis by clarifying what and how to estimate treatment effects in the presence of data affected by postrandomisation events.The purpose of this paper is to introduce palliative care researchers to this framework and how it can guide trial design, and efficacy and safety analysis in a palliative care context where individual withdrawal from the trial is common.In this paper, we describe the estimand framework and the background for it. We also consider postrandomisation events that are frequently encountered in palliative care trials and how these might affect objectives of interest. We then construct efficacy and safety estimands for a trial in palliative care. Better trial design and alignment of objectives with analysis can improve our understanding of what treatments do and do not work in palliative care., Competing Interests: Competing interests: JR: Personal fees from Amgen, outside the submitted work., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: People with life-limiting illnesses experience a range of distressing symptoms. Appetite-related symptoms are common, but studies have found varied prevalence and the distress caused has had limited quantification. Objectives: To examine the clinicodemographic factors and trajectory of appetite-related distress in the last 60 days of life. Design/Setting/Subjects: Consecutive cohort of 109,385 patients (359,038 data points) using specialist palliative care services in the Australian Palliative Care Outcomes Collaboration (PCOC). Measurements: Patient-reported appetite-related distress using the PCOC Symptom Assessment Scale. Results: Diagnoses included cancer (75%), end-stage organ failure (11%), neurodegenerative disease (4%), dementia (3%), and other noncancer (7%). Fifty-eight percent reported some degree of appetite-related distress at least once in the last 60 days of life. Daily mean distress scores did not vary greatly by diagnosis and the distributions of symptom severity were not linked with performance status. There was a sharp decline in mean distress for all diagnostic groups around 7-10 days before death. Moderate to severe distress was associated with nausea-, bowel-, pain-, and breathing-related distress, controlling for key baseline factors. Conclusion: Appetite-related distress is prevalent and burdensome in the 60 days before death and is strongly associated with distress from other cardinal symptoms.

Background: Depression is prevalent in people with very poor prognoses (days to weeks). Clinical practices and perceptions of palliative physicians towards depression care have not been characterised in this setting. The objective of this study was to characterise current palliative clinicians' reported practices and perceptions in depression screening, assessment and management in the very poor prognosis setting., Methods: In this cross-sectional cohort study, 72 palliative physicians and 32 psychiatrists were recruited from Australian and New Zealand Society of Palliative Medicine and Royal Australian and New Zealand College of Psychiatrists between February and July 2020 using a 23-item anonymous online survey., Results: Only palliative physicians results were reported due to poor psychiatry representation. Palliative physicians perceived depression care in this setting to be complex and challenging. 40.0% reported screening for depression. All experienced uncertainty when assessing depression aetiology. Approaches to somatic symptom assessment varied. Physicians were generally less likely to intervene for depression than in the better prognosis setting. Most reported barriers to care included the perceived lack of rapidly effective therapeutic options (77.3%), concerns of patient burden and intolerance (71.2%), and the complexity in diagnostic differentiation (53.0%). 66.7% desired better collaboration between palliative care and psychiatry., Conclusions: Palliative physicians perceived depression care in patients with very poor prognoses to be complex and challenging. The lack of screening, variations in assessment approaches, and the reduced likelihood of intervening in comparison to the better prognosis setting necessitate better collaboration between palliative care and psychiatry in service delivery, training and research., (© 2022. The Author(s).)

Background: Missing data compromise the internal and external validity of trial findings, however there is limited evidence on how best to reduce missing data in palliative care trials., Aim: To assess the association between participant and site level factors and missing data in palliative care trials., Design and Setting: Individual participant-level data analysis of 10 phase 3 palliative care trials using multi-level cross-classified models., Results: Participants with missing data at the previous time-point and poorer performance status were more likely to have missing data for the primary outcome and quality of life outcomes, at the primary follow-up point and end of follow-up. At the end of follow-up, the number of site randomisations and number of study site personnel were significantly associated with missing data. Trial duration and the number of research personnel explained most of the variance at the trial and site-level respectively, except for the primary outcome where the amount of data requested was most important at the trial-level. Variance at the trial level was more substantial than at the site level across models and considerable variance remained unexplained for all models except quality of life at the end of follow-up., Conclusion: Participants with a poorer performance status are at higher risk of missing data in palliative care trials and require additional support to provide complete data. Performance status is a potential auxiliary variable for missing data imputation models. Reducing trial variability should be prioritised and further factors need to be identified and explored to explain the residual variance.

Oxygen therapy is frequently prescribed for the palliation of breathlessness, despite lack of evidence for its effectiveness in people who are not hypoxaemic. This study aimed to compare and contrast patients', caregivers' and clinicians' experiences of palliative oxygen use for the relief of chronic breathlessness in people with advanced life-limiting illnesses, and how this shapes prescribing.A systematic review and meta-synthesis of qualitative data was conducted. MEDLINE, CINAHL and PsycINFO were searched for peer-reviewed studies in English (2000-April 2019) reporting perspectives on palliative oxygen use for reducing breathlessness in people with advanced illnesses in any healthcare setting. After data extraction, thematic synthesis used line-by-line coding of raw data (quotes) to generate descriptive and analytical themes.Of 457 articles identified, 22 met the inclusion criteria by reporting perspectives of patients (n=337), caregivers (n=91) or clinicians (n=616). Themes common to these perspectives were: 1) benefits and burdens of palliative oxygen use, 2) knowledge and perceptions of palliative oxygen use beyond the guidelines, and 3) longitudinal trajectories of palliative oxygen use.There are differing perceptions regarding the benefits and burdens of using palliative oxygen. Clinicians should be aware that oxygen use may generate differing goals of therapy for patients and caregivers. These perceptions should be taken into consideration when prescribing oxygen for the symptomatic relief of chronic breathlessness in patients who do not quality for long-term oxygen therapy., Competing Interests: Conflict of interest: S. Kochovska has nothing to disclose. Conflict of interest: D.H. Ferreira has nothing to disclose. Conflict of interest: M.V. Garcia has nothing to disclose. Conflict of interest: J.L. Phillips has nothing to disclose. Conflict of interest: D.C. Currow is an unpaid advisory board member for Helsinn Pharmaceuticals, is a paid consultant and receives payment for intellectual property with Mayne Pharma, and is a consultant with Specialised Therapeutics Australia Pty Ltd., (Copyright ©The authors 2021. For reproduction rights and permissions contact permissions@ersnet.org.)

Background: Sleep, a multi-dimensional experience, is essential for optimal physical and mental wellbeing. Poor sleep is associated with worse wellbeing but data are scarce from multi-site studies on sleeping-related distress in palliative care populations., Aim: To evaluate patient-reported distress related to sleep and explore key demographic and symptom distress related to pain, breathing or fatigue., Design: Australian national, consecutive cohort study with prospectively collected point-of-care data using symptoms from the Symptom Assessment Scale (SAS)., Setting/participants: People ( n  = 118,117; 475,298 phases of care) who died while being seen by specialist palliative care services ( n  = 152) 2013-2019. Settings: inpatient (direct care, consultative); community (outpatient clinics, home, residential aged care)., Results: Moderate/severe levels of sleeping-related distress were reported in 11.9% of assessments, more frequently by males (12.7% vs 10.9% females); people aged <50 years (16.2% vs 11.5%); and people with cancer (12.3% vs 10.0% for other diagnoses). Sleeping-related distress peaked with mid-range Australia-modified Karnofsky Performance Status scores (40-60).Strong associations existed between pain-, breathing- and fatigue-related distress in people who identified moderate/severe sleeping-related distress, adjusted for age, sex and functional status. Those reporting moderate/severe sleeping-related distress were also more likely to experience severe pain-related distress (adjusted odds ratios [OR] 6.6; 95% confidence interval (CI) 6.3, 6.9); breathing-related distress (OR 6.2; 95% CI 5.8, 6.6); and fatigue-related distress (OR 10.4; 95% CI 9.99-10.8)., Conclusions: This large, representative study of palliative care patients shows high prevalence of sleeping-related distress, with strong associations shown to distress from other symptoms including pain, breathlessness and fatigue.

Context: Fatigue is the most commonly reported symptom in life-limiting illnesses, although not much is known about the distress it causes patients as they approach death., Objectives: To map the trajectory of distress from fatigue reported by an Australian palliative care population in the last 60 days leading up to death., Methods: A prospective, longitudinal, consecutive cohort study using national data from the Australian Palliative Care Outcomes Collaboration between July 1, 2013, and December 31, 2018. Patients were included if they had at least one measurement of fatigue on a 0-10 numerical rating scale in the 60 days before death. Descriptive statistics were used to analyse patients by diagnostic cohort and functional status., Results: A total of 116,604 patients from 203 specialist palliative care services were analyzed, providing 501,104 data points. Distress from fatigue affected up to 80% of patients referred to palliative care, with the majority experiencing moderate or severe distress. Malignant and nonmalignant diagnoses were equally affected, with the neurological cohort showing the greatest variability. The degree of distress correlated with a patient's functional level; it worsened as a patient's function declined until a patient became bedbound when the reporting of distress reduced., Conclusions: Distress from fatigue is high in this cohort of patients. Interventions to reduce this distress need to be a research priority., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Very few measures are used successfully as part of routine care within national palliative care outcome programs. Only a handful of studies examine these measures. The aim of this study is to evaluate the validity of a measure used in a national outcomes program: the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS)., Methods: A retrospective multi-site cohort study with secondary analysis of routinely collected patient-level data to assess PCOC SAS's internal consistency, construct validity, reliability, interpretability, acceptability and sensitivity. The analyses used two sets, with data collected by inpatient and community palliative care services registered with the Australian national PCOC., Results: Dataset one included 1,117 patients receiving palliative care from 21 services. Dataset two included 5,294 patients receiving palliative care from 119 PCOC services. PCOC SAS demonstrated the ability to detect and discriminate distress by palliative care phase, functional status and diagnosis. Excellent and good convergent and discriminant validity were demonstrated. Fair through to substantial inter-rater and intra-rater reliability levels were evidenced. Sufficient interpretability resulted along with necessary levels of acceptability and sensitivity., Conclusion: PCOC SAS is a valid and reliable patient-reported outcome measure suitable for use in routine clinical care with patients requiring palliative and or end-of-life care, including in national outcomes programs., Competing Interests: The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: SC and KE (with other colleagues) developed the PCOC SAS. Otherwise, the authors declare that they have no competing interests. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

Background: The corona virus disease 2019 (COVID-19) pandemic has required specialist palliative care (SPC) services to respond by: (I) integrating infection prevention/control measures into care for their usual caseloads and (II) providing consultations and/or care for people dying from a new disease entity. The aim of the current study was to learn about the response of Australian SPC services to COVID-19 and its consequences in order to inform pandemic practice and policy., Methods: A cross-sectional, anonymous survey was administered online from May to July 2020. Email invitations were sent to 160 providers delivering 503 SPC services listed in the Australian Palliative Care Services Directory. Survey questions asked about service responses to COVID-19, impacts on care quality, and perceived benefits/disadvantages for palliative care clients post-pandemic. Open-ended responses were thematically coded using an established framework that classifies SPC pandemic responses under: 'stuff', 'staff', 'space', 'systems', 'separation', 'sedation', 'communication' and 'equity'., Results: Complete survey responses were received from 28 providers on behalf of 100 SPC services (response rates of 17%/20% respectively): 29 consultative, 25 community home-based, 21 outpatient, 15 inpatient wards/units, eight inpatient hospice and two other services. Responses were reported across all framework categories except 'sedation'. Concerns centred on: inadequate support for self-management, psychosocial needs and bereavement for clients living at home; pressures on staff capacity and wellbeing; and a perceived lack of health system preparedness for a potential future surge. Rapid implementation of telehealth across Australia was perceived to offer potential benefits to palliative care in the longer term, if provided with ongoing support., Conclusions: Meeting COVID-19-related challenges requires SPC to be agile and responsive. Advocacy is required to ensure the needs of people dying and their families are supported as well as people requiring acute care for COVID-19. Expansion of telehealth during the pandemic presents an opportunity for leveraging to benefit palliative care longer term.

Background: Family meetings facilitate the exploration of issues and goals of care however, there has been minimal research to determine the benefits and cost implications., Aims: To determine: (1) if family caregivers of hospitalised patients referred to palliative care who receive a structured family meeting report lower psychological distress (primary outcome), fewer unmet needs, improved quality of life; feel more prepared for the caregiving role; and receive better quality of end-of-life care; (2) if outcomes vary dependant upon site of care and; (3) the cost-benefit of implementing meetings into routine practice., Design: Pragmatic cluster randomised trial involving palliative care patients and their primary family caregivers at three Australian hospitals. Participants completed measures upon admission (Time 1); 10 days later (Time 2) and two months after the patient died (Time 3). Regression analyses, health utilisation and process evaluation were conducted., Results: 297 dyads recruited; control ( n  = 153) and intervention ( n  = 144). The intervention group demonstrated significantly lower psychological distress (Diff: -1.68, p  < 0.01) and higher preparedness (Diff: 3.48, p  = 0.001) at Time 2. No differences were identified based on quality of end of life care or health utilisation measures., Conclusions: Family meetings may be helpful in reducing family caregiver distress and enhancing their preparedness for the caregiving role and it appears they may be conducted without increased hospital health utilisation impacts; although opportunity costs need to be considered in order to routinely offer these as a standardised intervention. Additional health economic examination is also advocated to comprehensively understand the cost-benefit implications., Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12615000200583.

Background: Many people are dying from coronavirus disease 2019 (COVID-19), but consensus guidance on palliative care in COVID-19 is lacking. This new life-threatening disease has put healthcare systems under pressure, with the increased need of palliative care provided to many patients by clinicians who have limited prior experience in this field. Therefore, we aimed to make consensus recommendations for palliative care for patients with COVID-19 using the Convergence of Opinion on Recommendations and Evidence (CORE) process., Methods: We invited 90 international experts to complete an online survey including stating their agreement, or not, with 14 potential recommendations. At least 70% agreement on directionality was needed to provide consensus recommendations. If consensus was not achieved on the first round, a second round was conducted., Results: 68 (75.6%) experts responded in the first round. Most participants were experts in palliative care, respiratory medicine or critical care medicine. In the first round, consensus was achieved on 13 recommendations based upon indirect evidence and clinical experience. In the second round, 58 (85.3%) out of 68 of the first-round experts responded, resulting in consensus for the 14th recommendation., Conclusion: This multi-national task force provides consensus recommendations for palliative care for patients with COVID-19 concerning: advance care planning; (pharmacological) palliative treatment of breathlessness; clinician-patient communication; remote clinician-family communication; palliative care involvement in patients with serious COVID-19; spiritual care; psychosocial care; and bereavement care. Future studies are needed to generate empirical evidence for these recommendations., Competing Interests: Conflict of interest: M. Ekström has nothing to disclose. Conflict of interest: D.C. Currow reports that he is an unpaid advisory board member for Helsinn Pharmaceuticals, is a paid consultant and receives payment for intellectual property with Mayne Pharma, and is a consultant with Specialised Therapeutics Australia Pty. Ltd. Conflict of interest: M.J. Johnson reports institutional payments for consultancy from Mayne Pharma, during the conduct of the study. Conflict of interest: M. Maddocks has nothing to disclose. Conflict of interest: A.K. Simonds has nothing to disclose. Conflict of interest: T. Tonia is an ERS methodologist. Conflict of interest: K. Marsaa reports personal fees from GlaxoSmithKline, AstraZeneca, Boehringer Ingelheim, Novartis, Roche, Bristol-Myers Squibb, Chiesi Pharma, Kyowa Kirin AB and Norgine, outside the submitted work. Conflict of interest: D.J.A. Janssen reports personal fees for lectures from Novartis, Boehringer Ingelheim and AstraZeneca, outside the submitted work., (Copyright ©ERS 2020.)

Background: The palliative care population is prescribed a large number of drugs, increasing as patients deteriorate. The cumulative effects of these medications combined with underlying symptom burden can result in significant morbidity. There is an urgent need to describe possible symptomatic events that could be exacerbated by commonly prescribed drugs in palliative care and their impact. Objectives: To trial the feasibility and acceptability of determining baseline symptomatic event rates for community palliative care patients from which a composite measure of symptomatic events can be developed. Design: This prospective pilot study of patient-reported symptomatic events recruited a convenience cohort of 27 community palliative care patients in a metropolitan specialist palliative care service in Australia. Results: This study has demonstrated a high prevalence rate of symptomatic events (total crude event/participant day rate 0.87) in the study population. Conclusion: Data collection of patient-centered symptomatic events was acceptable and feasible to participants. This pilot supports a fully powered study.

Background: For most people, the last 12 months of life are spent living in the community, with the support of family and friends for a number of caregiving functions. Previous research has found that managing medicines is challenging for caregivers. Currently there is little information describing which caregivers may struggle with tasks associated with managing a loved one's medicines. Aim: The aim of this study was to identify factors that flag caregivers who are likely to experience problems when managing someone else's medications. Setting/Participants: The annual South Australian Health Omnibus Survey provides a face-to-face, cross-sectional, whole-of-population view of health care. Structured interviews, including questions covering palliative care and end-of-life care, were conducted with 14,625 residents in their own homes. Results: Of the 1068 respondents who had provided care for someone who died of a terminal illness in the last five years, 7.4% identified that additional support with medicine management would have been beneficial. In addition, three factors were predictive of the need for additional support in managing medicines: aged <65 years; lower household income; and living in a metropolitan region. Conclusion: The findings of this study provide insights to inform the development of palliative care service models to support informal caregivers in the management of medications for people with a life-limiting illness.

Background: Some patients do not receive adequate pain and symptom relief at the end of life, causing distress to patients, families and healthcare professionals. It is unclear whether undertreatment of symptoms occurs, in part, because of nurses' concerns about legal and/or disciplinary repercussions if the patient dies after medication is administered., Aim: The aim was to explore nurses' experiences and knowledge of the law relating to the provision of end-of-life pain and symptom relief., Design: Semi-structured interviews with nurses were assessed using a six-stage hybrid thematic analysis technique., Setting/participants: Four face-to-face and 21 telephone interviews were conducted with nurses who routinely prescribed and/or administered pain and symptom relief to patients approaching the end of their lives in Queensland and New South Wales, Australia., Results: While many nurses had no personal experiences with legal or professional repercussions after a patient had died, the fear of hastening death and being held accountable was frequently discussed and regarded as relevant to the provision of inadequate pain and symptom relief. Concerns included potential civil or criminal liability and losing one's job, registration or reputation. Two-thirds of participants believed that pain relief was sometimes withheld because of these legal concerns. Less than half of the interviewed nurses demonstrated knowledge of the doctrine of double effect, the legal protection for health professionals who provide end-of-life pain and symptom relief., Conclusion: Education is urgently required to strengthen nurses' knowledge of the legal protections supporting the provision of appropriate palliative medication, thereby improving their clinical practice with end-of-life patients.

Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.

Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social, or spiritual nature. This document encourages the use of validated assessment tools to recognize such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person Care concept describes the inseparability of the physical, emotional, and spiritual dimensions of the human being. Addressing psychological and spiritual needs, together with medical treatment, maintains personal integrity and promotes emotional healing. Most PC concerns can be addressed by the usual care team, supported by a PC specialist if needed. During dying, the persons' needs may change dynamically and intensive PC is often required. Following the death of a person, bereavement services benefit loved ones. The authors conclude that the inclusion of PC within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying., (Published on behalf of the European Society of Cardiology. All rights reserved. © The Author(s) 2019. For permissions, please email: journals.permissions@oup.com.)

Purpose: Head-to-head comparison of reliability, validity and responsiveness of four patient-reported outcome measures (PROMS) suitable for assessing health-related quality of life (HRQOL) in palliative care settings: EORTC QLQ-C15-PAL, FACT-G7, FACIT-Pal and short-form FACIT-Pal-14., Methods: Secondary analysis of two phase III randomised trials: ketamine for chronic cancer pain, octreotide for vomiting in inoperable malignant bowel obstruction. Sub-groups were defined by Australia-modified Karnofsky performance status (AKPS) and participants' global impression of change (GIC). Two aspects of reliability were assessed: internal consistency (Cronbach alpha, α); test-retest reliability (intra-class correlation coefficient (ICC)) of patients with stable AKPS and those who self-reported 'no change' on GIC. Construct validity was assessed via pre-determined hypotheses about sensitivity of PROM scores to AKPS groups and responsiveness of PROM change scores to GIC groups using analysis of variance., Results: FACIT-Pal had better internal consistency (α ranged 0.59-0.80, 15/18 ≥ 0.70) than QLQ-C15-PAL (0.51-0.85, 4/8 ≥ 0.70) and FACT-G7 (0.54-0.64, 0/2 ≥ 0.70). FACIT scales had better test-retest reliability (FACIT-Pal 11/27 ICCs ≥ 0.70, FACT-G7 2/3 ICCs ≥ 0.70) than QLQ-C15-PAL (2/30 ICCs ≥ 0.70, 18/30 ≤ 0.5). Four scales demonstrated sensitivity to AKPS: QLQ-PAL-15 Physical Functioning and Global QOL, FACT-G Functional Wellbeing and FACIT-Pal Trial Outcome Index (TOI). Nine scales demonstrated responsiveness: three in the ketamine trial population (QLQ-C15-PAL Pain, FACIT-Pal-14, FACT-G7), six in the octreotide trial population (QLQ-C15-PAL Fatigue; FACIT-Pal PalCare, TOI, Total; FACT-G Physical Wellbeing and Total)., Conclusions: No PROM was clearly superior, confirming that choosing the best PROM requires careful consideration of the research goals, patient population and the domains of HRQOL targeted by the intervention being investigated.

Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life., Aim: To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life., Design: An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (⩾7 Numerical Rating Scale 0-10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months., Setting/participants: People living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics., Results: A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants ( n  = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point., Conclusion: A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness.

Objectives: Methotrimeprazine is commonly used for the management of nausea but never tested formally against other drugs used in this setting. The aim was to demonstrate superior antiemetic efficacy., Design: Double-blind, randomised, controlled trial of methotrimeprazine versus haloperidol., Setting: 11 palliative care sites in Australia., Participants: Participants were >18 years, had cancer, an average nausea score of ≥3/10 and able to tolerate oral medications. Ineligible patients had acute nausea related to treatment, nausea for which a specific antiemetic was indicated, were about to undergo a procedure or had received either of the study drugs or a change in glucocorticoid dose within the previous 48 hours., Interventions: Based on previous studies, haloperidol was used as the control. Participants were randomised to encapsulated methotrimeprazine 6·25 mg or haloperidol 1·5 mg one time or two times per day and assessed every 24 hours for 72 hours., Main Outcome Measures: A ≥two-point reduction in nausea score at 72 hours from baseline. Secondary outcome measures were as follows: complete response at 72 hours (end nausea score less than 3), response at 24 and 48 hours, vomiting episodes, use of rescue antiemetics, harms and global impression of change., Results: Response to treatment at 72 hours was 75% (44/59) in the haloperidol (H) arm and 63% (36/57) in the methotrimeprazine (M) arm with no difference between groups (intention-to-treat analysis). Complete response rates were 56% (H) and 51% (M). In the per protocol analysis, there was no difference in response rates: (85% (44/52) (H) and 74% (36/49) (M). Complete per protocol response rates were 64% (H) and 59% (M). Toxicity worse than baseline was minimal with a trend towards greater sedation in the methotrimeprazine arm., Conclusion: This study did not demonstrate any difference in response rate between methotrimeprazine and haloperidol in the control of nausea., Trial Registration Number: ACTRN 12615000177550., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Physical activity in palliative care patients is closely linked to independence, function, carer burden, prognosis, and quality of life. Changes in physical activity can also be related to service provision needs, including requirements for support and prognosis. However, the objective measurement of physical activity is challenging, with options, including self-report, invasive and intensive measures such as calorimetry, or newer options such as pedometers and accelerometers. This latter option is also becoming more viable with the advent of consumer technology driven by the health and exercise industry. Objective: In this article, we highlight our experiences of activity monitoring in palliative care patients as part of telehealth trial. We also highlight the strengths and limitations of activity monitoring in the palliative care population and potential applications. Conclusions: Although the advent of consumer technology for activity measurement makes their use seem attractive in clinical settings for palliative care patients, there are a number of issues that must be considered, in particular the reason for the activity monitoring and associated limitations in the technology.

Background: The Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF) was developed to identify and triage palliative care needs in patients with chronic heart failure. A Dutch version is currently lacking., Aims: The aim of this study was to investigate the feasibility and acceptability of a Dutch NAT:PD-HF in chronic heart failure outpatients; and to gain preliminary data regarding the effect of the NAT:PD-HF on palliative care referral, symptoms, health status, care dependency, caregiver burden and advance directives., Methods: A mixed methods study including 23 outpatients with advanced chronic heart failure and 20 family caregivers was performed. Nurses conducted patient consultations using a Dutch translation of the NAT:PD-HF and rated acceptability. Before this visit and 4 months later, symptoms, health status, performance status, care dependency, caregiver burden and recorded advance directives were assessed. A focus group with participating nurses discussed barriers and facilitators towards palliative care needs assessment., Results: Acceptability was rated as 7 (interquartile range 6-7 points) on a 10-point scale. All patients had palliative care needs. In 48% actions were taken, including two patients referred to palliative care. Symptoms, performance status, care dependency, caregiver burden and advance directives were unchanged at 4 months, while health status deteriorated in patients completing follow-up ( n=17). Barriers towards palliative care needs assessment included feeling uncomfortable to initiate discussions and concerns about the ability to address palliative care needs., Conclusions: The NAT:PD-HF identified palliative care needs in all participants, and triggered action to address these in half. However, training in palliative care communication skills as well as palliative care interventions should accompany the introduction of a palliative care needs assessment tool., Netherlands National Trial Register (ntr): 5616. http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5616.

Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications., Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis., Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex., Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included., Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts., Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.

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., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

The aim of the study was to explore trajectories of breathlessness intensity by function and life-limiting illness diagnosis in the last 3 weeks of life in palliative care patients.A prospective, consecutive cohort study obtained point-of-care data of patients of Silver Chain Hospice Care Service (Perth, Australia) over the period 2011-2014 (n=6801; 51 494 data-points). Breathlessness intensity (0-10 numerical rating scale) and physical function (Australia-modified Karnofsky Performance Status (AKPS)) were measured at each visit. Time was anchored at death. Breathlessness trajectory was analysed by physical function and diagnosis using mixed effects regression.Mean±sd age was 71.5±15.1 years and 55.2% were male, most with cancer. The last recorded AKPS was >40 for 26.8%. Breathlessness was worst in people with cardiorespiratory disease and AKPS >40, and breathlessness in the last week of life increased most in this group (adjusted mean 2.92 versus all others 1.51; p=0.0001). The only significant interaction was with diagnosis and function in the last week of life (p<0.0001).Breathlessness is more intense and increases more in people with better function and cardiorespiratory disease immediately before death. Whether there are reversible causes for these people should be explored prospectively. Omitting function from previous population estimates may have overestimated breathlessness intensity for many patients in the days preceding death., Competing Interests: Conflict of interest: D.C. Currow received an unrestricted research grant from Mundipharma, is an unpaid member of an advisory board for Helsinn Pharmaceuticals, has been a consultant to Specialist Therapeutics and Mayne Pharma, and received intellectual property payments from Mayne Pharma., (Copyright ©ERS 2018.)

Background: Translating research evidence into clinical practice often has a long lag time., Aim: To determine the impact of a phase III randomised controlled trial on palliative care clinicians' self-reported practice change., Design: Online survey about use of octreotide in managing inoperable malignant bowel obstruction due to cancer or its treatments distributed in November 2016, 2 years after the first publication of the study in a peer-reviewed journal. Demographic, self-reported practice and the reasons underpinning this were collected. Responses were aggregated to 'practice modified' or 'practice not modified'. A multinomial regression model explored predictors of practice change., Setting: Members of the Australian New Zealand Society of Palliative Medicine., Results: Response rate was 20.8% (106/509): 55.6% were aged >50 years, 56.5% were female and 77% had previously prescribed octreotide for this clinical indication. Out of 106 respondents, 52 (49.1%) indicated modified practice (60.9% of those who had previously prescribed octreotide in this setting). In those who reported practice change, most frequently octreotide was now used when other therapies failed; for not changing practice, 'more confirmatory evidence was needed' was most often cited. In the regression model, older age (clinician age = 50-59 years; relative risk = 0.147; 95% confidence interval = 0.024-0.918; p = 0.04) and having practices with lower proportions of people treated with octreotide (0%-20%; relative risk = 0.039; 95% confidence interval = 0.002-0.768; p = 0.033) predicted greater self-reported practice change., Conclusion: Clinician-reported change in practice in the survey is seen in the majority of respondents. This suggests that there is a cohort of 'early adopters' within palliative care practice as new evidence becomes available.

Background: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death., Aim: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care., Design: A cross-sectional community household population survey., Setting and Participants: Respondents to the Household Survey for England., Results: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related ( p < 0.001). Palliative care services reduced the proportion of deaths in hospital ( p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not ( p < 0.001). Respondents' income was not associated with palliative care access ( p = 0.233). Overall, respondents' income and home death were not related ( p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home ( p = 0.069)., Conclusion: For people who had someone close to them die, decedents' access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents' income was unrelated to care recipients' place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the end of life.

Purpose of Review: Health service planning requires demographic, clinical, and health systems data and is unique to each health system. Planning for palliative care in older people must include patients and their carers. This review explores literature from the last 24 months., Recent Findings: The proportion of people living in skilled nursing facilities is increasing and many residents require quality palliative care. Simultaneously, the complexity of care for older people is also increasing. Systematic approaches to improving palliative care in these facilities have shown benefits that are cost-effective.Although advance care planning is widely promoted, a randomized controlled trial failed to show the benefits seen in nonrandomized trials. This requires a reconceptualization of current programs that seek to increase uptake.Caregivers take on complex decision-making which can be stressful. By contrast, patients are often very confident that the people who are close to them will make good decisions on their behalf.Specific subgroups considered in this review include carers (and the challenges they face), the 'oldest old' and people with dementia., Summary: Excellent research is being done to improve the care of older people with palliative care needs. Ultimately, how can key findings be incorporated into clinical care?

Background: Medications for symptom management in palliative care have associated, but poorly understood, harms. Drug-related harms have important clinical implications, may impact on patients' compliance and contribute to symptoms., Objective: To explore the longitudinal relationship between oral morphine equivalent daily dose (MEDD) and oral diazepam equivalent daily dose (DEDD) with functional, cognitive, and symptom outcomes in patients receiving palliative care., Design: Secondary longitudinal analysis of cancer decedents (n = 235) was carried out from a palliative care randomized controlled trial with multiple outcome measures. At each time point, MEDD and DEDD were calculated. Multilevel modeling was used to investigate independent associations between MEDD and DEDD, and cognitive and gastrointestinal symptoms, quality of life (QoL), performance status, and survival., Setting/subjects: Participants were recruited from a specialist palliative care program in southern Adelaide, were expected to live ≥48 hours, had pain in the previous 3 months, and a baseline Folstein Mini-Mental Status Examination score ≥25., Results: Cognitive and gastrointestinal symptoms, performance status, and QoL worsened over time. In the adjusted multilevel analysis, statistically significant relationships remained between MEDD/DEDD and worsening performance status (p = 0.001), DEDD and gastrointestinal effects (p < 0.001), MEDD and QoL (p < 0.022)., Conclusions: Commonly used palliative medications were associated with deteriorating performance status. The lack of association between MEDD with gastrointestinal or cognitive symptoms underlines that these associations are not inevitable with close attention. This analysis highlights the importance of including other medications as confounders when exploring medication-related harms. An understanding of the risk-benefit balance of medications is needed to maximize net benefits for patients.

Benefits of case conferencing for people with palliative care needs between a general practitioner, the person and other key participants include improving communication, advance care planning, coordination of care, clarifying goals of care and support for patient, families and carers. Despite a growing evidence base for the benefits, the uptake of case conferencing has been limited in South Australia. The aim of this study is to explore the beliefs and practice of South Australian general practitioners towards case conferencing for people with palliative care needs. Using an online survey, participants were asked about demographics, attitudes towards case conferencing and details about their most recent case conference for a person with palliative care needs. Responses were received from 134 general practitioners (response rate 11%). In total, 80% valued case conferencing for people with palliative care needs; however, <25% had been involved in case conferencing in the previous 2years. The major barrier was time to organise and coordinate case conferences. Enablers included general practitioner willingness or interest, strong relationship with patient, specialist palliative care involvement and assistance with organisation. Despite GPs' beliefs of the benefits of case conferencing, the barriers remain significant. Enabling case conferencing will require support for organisation of case conferences and review of Medicare Benefits Schedule criteria for reimbursement.

Background: Red Blood Cell (RBC) transfusions are commonly used in palliative care. RBCs are a finite resource, transfusions carry risks, and the net effect (benefits and harms) is poorly defined for people with life-limiting illnesses., Objective: To examine the indications and effects of RBC transfusion in palliative care patients., Design: This international, multisite, prospective consecutive cohort study., Setting/subjects: Palliative care patients undergoing RBC transfusion., Measurements: Target symptoms (fatigue, breathlessness, generalized weakness, or dizziness) were assessed before transfusion and at day 7 by treating clinicians, using National Cancer Center Institute Common Terminology Criteria for Adverse Events. Assessment of harms was made at day 2., Results: One hundred and one transfusions with day 7 follow-up were collected. Median age was 72.0 (interquartile range 61.5-83.0) years, 58% men, and mean Australia-modified Karnofsky Performance Status (AKPS) of 48 (standard deviation [SD] 17). A mean 2.1 (SD 0.6) unit was tranfused. The target symptoms were fatigue (61%), breathlessness (16%), generalized weakness (12%), dizziness (6%), or other (5%). Forty-nine percent of transfusions improved the primary target symptom, and 78% of transfusions improved at least one of the target symptoms. Harms were infrequent and mild. An AKPS of 40%-50% was associated with higher chances of symptomatic benefit in the target symptom; however, no other predictors of response were identified., Conclusions: In the largest prospective consecutive case series to date, clinicians generally reported benefit, with minimal harms. Ongoing work is required to define the optimal patient- and clinician-reported hematological and functional outcome measures to optimize the use of donor blood and to minimize transfusion-associated risk.

Objectives: Assess (i) the quality of reporting and handling of missing data (MD) in palliative care trials, (ii) whether there are differences in the reporting of criteria specified by the Consolidated Standards of Reporting Trials (CONSORT) 2010 statement compared with those not specified, and (iii) the association of the reporting of MD with journal impact factor and CONSORT endorsement status., Study Design and Setting: Systematic review of palliative care randomized controlled trials. CENTRAL, MEDLINE, and EMBASE (2009-2014) were searched., Results: One hundred and eight trials (15,560 participants) were included. MD was incompletely reported and not handled in accordance with current guidance. Reporting criteria specified by the CONSORT statement were better reported than those not specified (participant flow, 69%; number of participants not included in the primary outcome analysis, 94%; and the reason for MD, 71%). However, MD in items contributing to scale summaries (10%) and secondary outcomes (9%) were poorly reported, so the proportion of MD stated is likely to be an underestimate. The reason for MD provided was unclear for 54% of participants and only 16% of trials with MD reported a MD sensitivity analysis. The odds of reporting most of the MD and other risk of bias reporting criteria were increased as the journal impact factor increased and in journals that endorsed the CONSORT statement., Conclusion: Further development of the CONSORT MD reporting guidance is likely to improve the quality of reporting. Reporting recommendations are provided., (Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: Feasibility and pilot study designs are common in palliative care research. Finding standard guidelines on the structure and reporting of these study types is difficult., Objectives: In feasibility and pilot studies in palliative care research, to determine 1) how commonly a priori feasibility are criteria reported and whether results are subsequently reported against these criteria? and 2) how commonly are participants' views on acceptability of burden of the study protocol assessed?, Methods: Four databases (OVID Medline, EMBASE, CINAHL, and PubMed via caresearch.com.au.) were searched. Search terms included palliative care, terminal care, advance care planning, hospice, pilot, feasibility, with a publication date between January 1, 2012 and December 31, 2013. Articles were selected and appraised by two independent reviewers., Results: Fifty-six feasibility and/or pilot studies were included in this review. Only three studies had clear a priori criteria to measure success. Sixteen studies reported participant acceptability or burden with measures. Forty-eight studies concluded feasibility., Conclusion: The terms "feasibility" and "pilot" are used synonymously in palliative care research when describing studies that test for feasibility. Few studies in palliative care research outline clear criteria for success. The assessment of participant acceptability and burden is uncommon. A gold standard for feasibility study design in palliative care research that includes both clear criteria for success and testing of the study protocol for participant acceptability and burden is needed. Such a standard would assist with consistency in the design, conduct and reporting of feasibility and pilot studies., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)