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Optimal EOL care addresses the physical, practical, psychosocial and spiritual needs of dying patients and their families. Effective EOL care can readily be provided by the patients’ usual care team and delivered in the community, as an inpatient or in a nursing home setting. Initiating EOL care is dependent on clinicians’ timely recognition that the patient is dying, and sensitively communicating this reality to the patient, their family and other members of the interdisciplinary care team. Recognition of dying focuses the goals of care on comfort and dignity in accordance with the patients and their families’ wishes. It acknowledges the importance of assessing and managing the patient’s symptoms, as well as their psychological, social and spiritual care needs.

Introduction: Delirium has a high mortality rate. Understanding predictors of prognosis in patients with delirium will aid treatment decisions and communication. This study aimed to explore variables associated with death during an established episode of delirium in palliative care when haloperidol treatment had been commenced. Methods: A consecutive cohort of palliative care patients, from 14 centers across four countries, is reported. The outcome of interest was death within 14 days from commencement of haloperidol treatment for delirium. Clinicodemographic variables explored were delirium severity, age, gender, primary life limiting illness, body mass index (BMI), total daily haloperidol dose at baseline (mg), functional status, and comorbidities. Results: One hundred and sixteen palliative care patients where vital status was known were included in the analysis; 45% (n = 52) died within 10 days, and 56% (n = 65) died within 14 days. In multivariate analyses no clinical or demographic variables predicted death, apart from lower BMI in noncancer patients. Conclusion: This study has shown a very high mortality rate within two weeks of commencing haloperidol for delirium in palliative care, with no clear clinical predictors for those with a higher chance of dying. Having a higher BMI offered some benefit in survival, but only in noncancer patients. When delirium occurs in advanced illness, discussion should be initiated about the gravity of the clinical situation.

Background: Internationally, delirium prevalence in palliative care is reported to range between 26-88%, yet little is known about the occurrence of delirium in Australian palliative care inpatient populations. Aims: To: 1) ascertain 24-hour delirium point-prevalence in an Australian palliative care inpatient population; 2) test the feasibility and acceptability of the delirium measurement methodology. Methods: This was a prospective cross-sectional study. Delirium was measured in patients of two palliative care units using the Nursing Delirium Screening Scale, Memorial Delirium Assessment Scale and DSM-5 diagnostic criteria. Descriptive statistics were used to report patient demographics, palliative care phase, function, delirium measure completion, and proportion of patients with a positive screen and diagnosis. Results: Patients (n=47) had a mean age of 74 years (SD+10) and mostly malignant diagnoses (96%). All patients were screened for delirium, but few were capable of completing the Memorial Delirium Assessment Scale (n=2). One-third of patients (34%) screened positive for delirium and 19% were diagnosed as delirious according to the DSM-5. Conclusion: The Nursing Delirium Screening Scale and physician application of DSM-5 proved feasible and acceptable, while the Memorial Delirium Assessment Scale did not. Patients' advanced age and proportions screening positive for delirium and diagnosed as delirious attest to the need to rapidly recognise, assess and respond to patients experiencing this distressing disorder while being cared for in palliative care inpatient settings.

Introduction: Breathlessness remains a highly prevalent and distressing symptom for many patients with progressive life-limiting illnesses. Evidence-based interventions for chronic breathlessness are limited, and there is an ongoing need for high-quality research into developing management strategies for optimal palliation of this complex symptom. Previous studies have suggested that selective serotonin reuptake inhibitors such as sertraline may have a role in reducing breathlessness. This paper presents the protocol for a large, adequately powered randomised study evaluating the use of sertraline for chronic breathlessness in people with progressive life-limiting illnesses. Methods and analysis: A total of 240 participants with modified Medical Research Council Dyspnoea Scale breathlessness of level 2 or higher will be randomised to receive either sertraline or placebo for 28 days in this multisite, double-blind study. The dose will be titrated up every 3 days to a maximum of 100 mg daily. The primary outcome will be to compare the efficacy of sertraline with placebo in relieving the intensity of worst breathlessness as assessed by a 0–100 mm Visual Analogue Scale. A number of other outcome measures and descriptors of breathlessness as well as caregiver assessments will also be recorded to ensure adequate analysis of participant breathlessness and to allow an economic analysis to be performed. Participants will also be given the option of continuing blinded treatment until either study data collection is complete or net benefit ceases. Appropriate statistical analysis of primary and secondary outcomes will be used to describe the wealth of data obtained. Ethics and dissemination: Ethics approval was obtained at all participating sites. Results of the study will be submitted for publication in peer-reviewed journals and the key findings presented at national and international conferences.

Free to read on journal website (may need to create free account first) Summary - About 9% of Australians aged 65 years and over have a diagnosis of dementia. - Clinical practice guidelines aim to enhance research translation by synthesising recent evidence for health and aged care professionals. - New clinical practice guidelines and principles of care for people with dementia detail the optimal diagnosis and management in community, residential and hospital settings. The guidelines have been approved by the National Health and Medical Research Council. - The guidelines emphasise timely diagnosis; living well with dementia and delaying functional decline; managing symptoms through training staff in how to provide person-centred care and using non-pharmacological approaches in the first instance; and training and supporting families and carers to provide care.

Australian clinical trials are planned to evaluate medicinal cannabis in a range of clinical contexts. Aims: To explore the preferences, attitudes and beliefs of patients eligible and willing to consider participation in a clinical trial of medicinal cannabis for poor appetite and appetite-related symptoms from advanced cancer.

Introduction Phase II studies and meta-analyses support using regular low-dose oral morphine to safely reduce chronic breathlessness when underlying causes are treated optimally. Aim To determine efficacy and safety of ER morphine for relieving chronic breathlessness and predictors of response. Methods Opioid-naïve participants with modified Medical Research Council scores (mMRC) 2-4 despite optimal treatment of the underlying cause(s) were randomised to double-blinded placebo or 20mg ER morphine daily for 7 days. The primary outcome was reduction in breathlessness intensity (0-100mm visual analogue scale; a clinically meaningful reduction is >5.5mm.). Secondary endpoints were adverse events. Results 282 participants (mean age 73.7, SD 9.5; 162 (57%) with COPD) were randomised in 12 sites in Australia. There was no difference in average breathlessness over the previous 24 hours, but worst breathlessness in people with COPD and mMRC 3 or 4 was significantly reduced in the intervention arm (response rate 54% vs 33%; p=0.035). Using an adjusted mixed model with daily scores, worst breathlessness improved on morphine compared to placebo (4.57mm; 95% CI, 0.31 to 8.83; p=0.036); in patients with COPD (6.30 mm; 95% CI, 1.36 to 11.24; p=0.012); and COPD with mMRC 3,4 (11.47mm; 95%CI, 5.21 to 17.73; p <0.001). Withdrawals were similar between arms (time to event, event rate). Constipation and drowsiness were more frequent on morphine. There were no treatment-emergent episodes of respiratory depression. Conclusion People with COPD and more severe chronic breathlessness gain symptomatic benefit safely from daily ER morphine.

Many people in our communities live with symptoms for years or decades, something of relevance to hospice/palliative care clinicians and researchers. The proportion of people in the community at large who have a chronic symptom is likely to approximate the proportion of people referred to hospice/palliative care services with that same chronic symptom that pre-dates their life-limiting illness. Such patients may have different responsiveness to, and expectations from, symptomatic therapies, thus requiring more advanced approaches to symptom control. For researchers evaluating the impact of hospice/palliative care services, failing to account for people with long-term refractory symptoms pre-dating their life-limiting illness may systematically underestimate services' benefits. Observational symptom prevalence studies reported in hospice/palliative care to date have not accounted for people with long-term refractory symptoms, potentially systematically overestimating symptoms attributed to life-limiting illnesses. Cross-sectional community prevalence rates of key chronic refractory symptoms largely unrelated to their life-limiting illness reflect the likely prevalence on referral to hospice/palliative care: fatigue (up to 35%); pain (12%-31%); pain with neuropathic characteristics (9%); constipation (2%-29%); dyspnea (4%-9%); cognitive impairment (>10% of people >65 years old; >30% of people >85 years old); anxiety (4%); and depression (lifetime incidence 2%-15%; one year prevalence 3%). Prospective research is needed to establish (1) the prevalence and severity of chronic symptoms that pre-date the diagnosis of a life-limiting illness in people referred to hospice/palliative care services, comparing this to whole-of-population estimates; and (2) whether this group is disproportionately represented in people with refractory symptoms.

There is consensus that survivorship care should be integrated, risk or needs stratified, individualised, coordinated and multidisciplinary. But further research is needed to determine the service models that can best deliver optimal outcomes in the most cost-effective way. Model heterogeneity and diversity is needed to address issues that are disease, treatment or symptom specific, and account for other modifying influences such as comorbid illness and lifestyle. Further work is needed to determine the key elements within models of care configured to support cancer survivors that positively influence outcomes, and how these elements can be best delivered across a diverse range of care settings. In the meantime, adopting a needs based approach to care at the individual patient level will ensure that those in most need have access to relevant support and care from specialist palliative care services. Fortunately, current Australian health reforms provide a climate of plasticity and innovation that is conducive to the paradigm shifts required.

Background: Models of palliative care need to address the unmet needs of children, young people and families. Objective: To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of children and young people with palliative care needs and their parents. Data sources: Electronic databases including CINAHL, Medline, PsycINFO and AMED searched using combined terms for palliative care, service models and children along with reference lists of included studies. Study selection: Peer reviewed empirical studies reporting on evaluation of paediatric palliative care by children and young people with palliative care needs (0-19 years), or their families, published in English, between 2000 and 2013. The views of health professionals and grey literature were excluded. Quality appraisal completed by two researchers, consensus reached following discussion. Data extraction and synthesis: Data extracted by two researchers, entered into an electronic proforma and synthesised using a narrative approach. Results: Seven studies were identified of which two were quantitative, one was qualitative and four were mixed methods. Synthesis highlighted the need for tailored support enabling flexibility in care, with specific reference to location of care and access to psychosocial support, 24. h specialist support, respite care and sibling support. Conclusions: Paediatric palliative care should be flexible, responsive and tailored to the needs of children and their families. Robust evaluation of models of care that incorporate these elements is required to inform optimal care.

Background: Cancer pain remains a major public health concern. Despite effective treatments being available to manage the majority of cancer pain, this debilitating symptom is frequently under treated. As cancer has becomes a chronic disease a range of health professionals, including community nurses in Australia are increasingly caring for people living with cancer related pain. Yet, little is known about community nurses capacity to assess and manage cancer pain in accordance with best available evidence. Objectives: This study aimed to: identify the barriers and facilitators to adult cancer pain assessment and management as perceived by Australian health professionals; identify if cancer pain guidelines are currently used; identify barriers and facilitators to guideline use; and establish the need for Australian cancer pain guidelines. This article reports on community nurses' perceptions of managing cancer pain in the community setting. Methods: A cross-sectional survey was administered online. Invitations were circulated via peak bodies and clinical leaders seeking the views and experiences of health professionals involved in caring for people living with cancer pain. Descriptive statistics were used to summarise the quantitative data, and thematic content analysis were used to describe the qualitative data. Results: Sixty-two community nurses responded to the survey, representing 29% of the total sample. These participants reported high levels of adherence to accepted cancer pain management practices in their workplace, with 71% nominating the Palliative Care Therapeutic Guideline V.3 as being most frequently used to manage community patients' cancer related pain. Key barriers to effective cancer pain management in the community were: difficulties accessing non-pharmacological interventions (89%), lack of coordination by multiple providers (89%), and impact of distance on ability to access pain-related services for patients (86%). Conclusion: A range of sys

Objectives. A drive to promote advance care planning at a population level has led to a proliferation of online advance care directive (ACD) templates but little information to guide consumer choice. The current study aimed to appraise the quality of online ACD templates promoted for use in Australia. Methods. A systematic review of online Australian ACD templates was conducted in February 2014. ACD templates were identified via Google searches, and quality was independently appraised by two reviewers against criteria from the 2011 report A National Framework for Advance Care Directives. Bias either towards or against future medical treatment was assessed using criteria designed to limit subjectivity. Results. Fourteen online ACD templates were included, all of which were available only in English. Templates developed by Southern Cross University best met the framework criteria. One ACD template was found to be biased against medical treatment - the Dying with Dignity Victoria Advance Healthcare Directive. Conclusions. More research is needed to understand how online resources can optimally elicit and record consumers' individual preferences for future care. Future iterations of the framework should address online availability and provide a simple rating system to inform choice and drive quality improvement. What is known about the topic? Online availability of ACD templates provides consumers with an opportunity for advance care planning outside of formal healthcare settings. While online availability has advantages, there is a risk that templates may be biased either for or against medical treatment and may not elicit directives that are appropriately informed by reflection on personal values and discussion with family and health professionals. What does this paper add? This is the first attempt at monitoring the quality and bias of online ACD templates designed for use in Australia. What are the implications for practitioners? The results of this review provid

Introduction: High-grade glioma (HGG) is a rapidly progressive and debilitating disease. Primary carers experience significant levels of distress which impacts on their experience of caregiving, the quality of care received and the community in terms of the increased reliance on healthcare due to the potential development of complicated grief. This paper describes the protocol for testing the efficacy and feasibility of an intervention for primary carers of patients with HGG in order to improve preparedness to care and reduce carer distress. Methods: Randomised controlled trial. The target population is carers of patients with HGG who are undergoing combined chemoradiotherapy. The intervention consists of 4 components: (1) initial telephone assessment of unmet needs of the carer, (2) tailoring of a personalised resource folder, (3) home visit, (4) ongoing monthly telephone contact and support for 12 months. The control arm will receive usual care. Primary hypothesis: This intervention will improve preparedness for caring and reduce carer psychological distress. Secondary hypothesis: This intervention will reduce carer unmet needs. The longer term aim of the intervention is to reduce patient healthcare resource utilisation and, by doing so, reduce costs. Assessments will be obtained at baseline, 8 weeks post intervention, then 4, 6 and 12 months. Participants will also complete a healthcare utilisation checklist and proxy performance status which will be assessed at baseline and monthly. 240 carers will be recruited. The sample size is 180. Multilevel mixed effects regression models will be applied to test the effect of the intervention. Ethics: Ethics approval has been gained from Curtin University and the participating sites. Dissemination: Results will be reported in international peer-reviewed journals.

INTRODUCTION: Comparing multiple, diverse outcomes with cost-effectiveness analysis (CEA) is important, yet challenging in areas like palliative care where domains are unamenable to integration with survival. Generic multi-attribute utility values exclude important domains and non-health outcomes, while partial analyses-where outcomes are considered separately, with their joint relationship under uncertainty ignored-lead to incorrect inference regarding preferred strategies. OBJECTIVE: The objective of this paper is to consider whether such decision making can be better informed with alternative presentation and summary measures, extending methods previously shown to have advantages in multiple strategy comparison. METHODS: Multiple outcomes CEA of a home-based palliative care model (PEACH) relative to usual care is undertaken in cost disutility (CDU) space and compared with analysis on the cost-effectiveness plane. Summary measures developed for comparing strategies across potential threshold values for multiple outcomes include: expected net loss (ENL) planes quantifying differences in expected net benefit; the ENL contour identifying preferred strategies minimising ENL and their expected value of perfect information; and cost-effectiveness acceptability planes showing probability of strategies minimising ENL. RESULTS: Conventional analysis suggests PEACH is cost-effective when the threshold value per additional day at home ( 1) exceeds $1,068 or dominated by usual care when only the proportion of home deaths is considered. In contrast, neither alternative dominate in CDU space where cost and outcomes are jointly considered, with the optimal strategy depending on threshold values. For example, PEACH minimises ENL when 1=$2,000 and 2=$2,000 (threshold value for dying at home), with a 51.6% chance of PEACH being cost-effective. CONCLUSION: Comparison in CDU space and associated summary measures have distinct advantages

CONTEXT: Does octreotide reduce vomiting in cancer-associated bowel obstruction? OBJECTIVES: To evaluate the net effect of adding octreotide or placebo to standardized therapies on the number of days free of vomiting for populations presenting with vomiting and inoperable bowel obstruction secondary to cancer or its treatment. METHODS: Twelve services enrolled people with advanced cancer presenting with vomiting secondary to bowel obstruction where surgery or anti-cancer therapies were not indicated immediately. In a double-blind study, participants were randomized to placebo or octreotide (600 μg/24 hours by infusion). Both arms received standardized supportive therapy (infusion of ranitidine [200 mg/24 hours], dexamethasone [8 mg/24 hours], and parenteral hydration [10-20 mL/kg/24 hours]). The primary outcome was patient-reported days free of vomiting at 72 hours. RESULTS: In a study that recruited to the numbers identified in its power calculation, 87 participants provided data at 72 hours (45, octreotide arm). Seventeen people (octreotide) and 14 (placebo) were free of vomiting for 72 hours (P = 0.67). Mean days free of vomiting were 1.87 (SD 1.10; octreotide) and 1.69 (SD 1.15; placebo; P = 0.47). An adjusted multivariate regression of the incidence of vomiting over the study showed a reduced number of episodes of vomiting in the octreotide group (incidence rate ratio = 0.40; 95% CI: 0.19-0.86; P = 0.019); however, people in the octreotide arm were 2.02 times more likely to be administered hyoscine butylbromide (P = 0.004), potentially reflecting increased colicky pain. CONCLUSION: Although there was no reduction in the number of days free of vomiting, the multivariate analysis suggests that further study of somatostatin analogues in this setting is warranted.

Background Care for people with advanced dementia requires a palliative approach targeted to the illness trajectory and tailored to individual needs. However, care in nursing homes is often compromised by poor communication and limited staff expertise. This paper reports the protocol for the IDEAL Project, which aims to: 1) compare the efficacy of a facilitated approach to family case conferencing with usual care; 2) provide insights into nursing home- and staff-related processes influencing the implementation and sustainability of case conferencing, and; 3) evaluate cost-effectiveness. Design/Method A pragmatic parallel cluster randomised controlled trial design will be used. Twenty Australian nursing homes will be randomised to receive either facilitated family case conferencing or usual care. In the intervention arm, we will train registered nurses at each nursing home to work as Palliative Care Planning Coordinators (PCPCs) 16 h per week over 18 months. The PCPCs’ role will be to: 1) use evidence-based ‘triggers’ to identify optimal time-points for case conferencing; 2) organise, facilitate and document case conferences with optimal involvement from family, multi-disciplinary nursing home staff and community health professionals; 3) develop and oversee implementation of palliative care plans, and; 4) train other staff in person-centred palliative care. The primary endpoint will be symptom management, comfort and satisfaction with care at the end of life as rated by bereaved family members on the End of Life in Dementia (EOLD) Scales. Secondary outcomes will include resident quality of life (Quality of Life in Late-stage Dementia [QUALID]), whether a palliative approach is taken (e.g. hospitalisations, non-palliative medical treatments), staff attitudes and knowledge (Palliative Care for Advanced Dementia [qPAD]), and cost effectiveness. Processes and factors influencing i

Aims: Guidelines recommend targeted use of antipsychotics in delirium for specific symptoms however this approach has not been evaluated in randomised trials. To compare the efficacy of risperidone relative to placebo in the control of specific delirium symptoms in palliative care patients (communication, behaviour and/or perceptual disturbances on Nursing Delirium Screening Scale) at 72 hours after study commencement. Secondary aims were to compare haloperidol and placebo; and risperidone and haloperidol.

Context Does octreotide reduce vomiting in cancer-associated bowel obstruction? Objectives To evaluate the net effect of adding octreotide or placebo to standardized therapies on the number of days free of vomiting for populations presenting with vomiting and inoperable bowel obstruction secondary to cancer or its treatment. Methods Twelve services enrolled people with advanced cancer presenting with vomiting secondary to bowel obstruction where surgery or anti-cancer therapies were not indicated immediately. In a double-blind study, participants were randomized to placebo or octreotide (600mcg/24hours by infusion). Both arms received standardized supportive therapy (infusion of ranitidine [200mg/24hours], dexamethasone [8mg/24hours] and parenteral hydration [10-20mls/kg/24hours]). The primary outcome was patient-reported days free of vomiting at 72 hours. Results In a study that recruited to the numbers identified in its power calculation, 87 participants provided data at 72 hours (45, octreotide arm). Seventeen people (octreotide) and 14 (placebo) were free of vomiting for 72 hours. (P = 0.67). Mean days free of vomiting were 1.87 (SD 1.10; octreotide) and 1.69 (SD 1.15; placebo); P = 0.47). An adjusted multivariable regression of the incidence of vomiting over the study showed a reduced number of episodes of vomiting in the octreotide group (IRR = 0.40; 95% CI 0.19, 0.86; P = 0.019); however, people in the octreotide arm were 2.02 times more likely to be administered hyoscine butylbromide (P = 0.004) potentially reflecting increased colicky pain. Conclusion Although there was no reduction in the number of days free of vomiting, the multivariable analysis suggests that further study of somatostatin analogues in this setting is warranted.