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Psycho-existential symptoms are common yet often missed or neglected in palliative care. Screening can be an effective way to recognize and respond to this need.We aimed to implement routine use of the Psycho-existential Symptom Assessment Scale (PeSAS) as a screening tool in Australian palliative care services and discern the symptom prevalence identified.In a multi-site rolling design, we established implementation site committees and embarked on experiential workshops to train clinicians in the tool's efficient use. Patient symptom prevalence data were collected to compare uptake across sites. Descriptive statistics were applied.Over one year, we trained 216 clinicians across six palliative care services in the use of the PeSAS as a screening tool and collected data from 1405 patients. Clinicians reported significant growth in their sense of efficacy in assessing psycho-existential wellness. Services using electronic records implemented most easily. Psycho-existential symptoms with clinically significant prevalence (scores ≥ 4/10) included anxiety 41.1%, discouragement 37.6%, hopelessness 35.8%, pointlessness 26.9%, depression 30.3%, and the wish to die 17%. The precision of measurement within 3% was found for severe ratings (score ≥ 8/10) including anxiety 10.6%, depression 10.2%, the wish to die 7.6%, and confusion 3.6%.Clinicians can be trained to screen with the Psycho-existential Symptom Assessment Scale, which serves as a valuable measure to better recognize symptoms of psycho-existential distress among palliative care patients. Implementation barriers included the prior ethos of the service, confidence in talking about these themes, electronic data entry, and perceived time pressures.

Background With increasing use of medicinal cannabis for symptom management, clinical trials nurses need to consider the various legal, social, ethical, and interdisciplinary care issues of implementing these clinical trials, especially in a palliative care population. Aim To define the trials nurses’ role in operationalising a medicinal cannabis pharmacokinetic inpatient trial in an advanced cancer population. Methods A qualitative, descriptive design incorporating case study methodology was used. Data were collected from minuted meetings, field notes, telephone, and email discussions involving trials nurses at two palliative care sites. Data were integrated and synthesised to identify the key considerations required to operationalise the trial and define the trials nurses’ role. Findings Three key considerations were identified: (i) Normalising the trial, (ii) Creating the environment to undertake the trial, and (iii) Managing the complexity. The trials nurses’ role was explored through subthemes of these considerations including: their understanding of the purpose of the research and training in the protocol; organising inpatient resources, pharmacy requirements and managing the external scrutiny; participant recruitment, staffing requirements, safety, and supporting caregivers. Discussion This study emphasises the multifactorial role of the trials nurses in managing a complex palliative care trial, and the importance of their early involvement and recognition as the vital link between all parties. Conclusion Defining the trials nurses’ role, within the confines of the protocol, the context of efficient nursing processes and ensuring a patient-centred approach enabled the operationalisation of a Phase I/II medicinal cannabis trial which will have global impact.

Research describing patients using medicinal cannabis and its effectiveness is lacking. We aimed to describe adults with non-cancer diagnoses who are prescribed medicinal cannabis via a retrospective medical record review and assess its effectiveness and safety. From 157 Australian records, most were female (63.7%; mean age 63.0 years). Most patients had neurological (58.0%) or musculoskeletal (24.8%) conditions. Medicinal cannabis was perceived beneficial by 53.5% of patients. Mixed-effects modelling and post hoc multiple comparisons analysis showed significant changes overtime for pain, bowel problems, fatigue, difficulty sleeping, mood, quality of life (all p < 0.0001), breathing problems (p = 0.0035), and appetite (p = 0.0465) Symptom Assessment Scale scores. For the conditions, neuropathic pain/peripheral neuropathy had the highest rate of perceived benefit (66.6%), followed by Parkinson’s disease (60.9%), multiple sclerosis (60.0%), migraine (43.8%), chronic pain syndrome (42.1%), and spondylosis (40.0%). For the indications, medicinal cannabis had the greatest perceived effect on sleep (80.0%), followed by pain (51.5%), and muscle spasm (50%). Oral oil preparations of balanced delta-9-tetrahydrocannabinol/cannabidiol (average post-titration dose of 16.9 mg and 34.8 mg per day, respectively) were mainly prescribed. Somnolence was the most frequently reported side effect (21%). This study supports medicinal cannabis’ potential to safely treat non-cancer chronic conditions and indications.

Background: Paracentesis is commonly undertaken in patients with cancer-related ascites. Aim: To systematically investigate the symptomatic benefits and harms experienced by patients with cancer undergoing paracentesis using real-world data in the palliative care setting. Design: Prospective, multisite, observational, consecutive cohort study. Benefits and harms of paracentesis were assessed between 01/07/2018 and 31/02/2021 as part of routine clinical assessments by treating clinicians at four timepoints: (T0) before paracentesis; (T1) once drainage ceased; (T2) 24 h after T1 and (T3) 28 days after T1 or next paracentesis, if sooner. Setting/participants: Data were collected from 11 participating sites across five countries (Australia, England, Hong Kong, Malaysia and New Zealand) on 111 patients undergoing paracentesis via a temporary (73%) or indwelling (21%) catheter: 51% male, median age 69 years, Australia-modified Karnofsky Performance Score 50. Results: At T1 ( n = 100), symptoms had improved for most patients (81%), specifically abdominal distension (61%), abdominal pain (49%) and nausea (27%), with two-thirds experiencing improvement in ⩾2 symptoms. In the remaining patients, symptoms were unchanged (7%) or worse (12%). At least one harm occurred in 32% of patients, the most common being an ascitic leak ( n = 14). By T3, 89% of patients had experienced some benefit and 36% some harm, including four patients who experienced serious harm, one of which was a fatal bowel perforation. Conclusion: Most patients obtained rapid benefits from paracentesis. Harms were less frequent and generally mild, but occasionally serious and fatal. Our findings help inform clinician-patient discussions about the potential outcomes of paracentesis in this frail population.

Transdermal buprenorphine (TDB) has demonstrated effectiveness in treating a range of chronic pain conditions, including cancer pain, nociceptive pain, and neuropathic pain and has a favorable safety profile. Worldwide, clinical experience of its use is relatively limited. There is considerable misunderstanding about the pharmacology, mechanism of action, and safety of buprenorphine. There is also limited guidance on the appropriate use of TDB for chronic pain management. This article presents an overview of TDB and also provides practical recommendations for its use as part of a multifaceted strategy in chronic cancer and non-cancer pain.

IntroductionMajor depressive disorder (MDD) in people with advanced life-limiting illnesses can have significant impact on the quality-of-life of those affected. The management of MDD in the palliative care setting can be challenging as typical antidepressants may not work in time nor be tolerated due to coexisting organ dysfunctions, symptom burden and frailty. Parenteral ketamine was found to exhibit effective and rapid-onset antidepressant effect even against treatment-resistant depression in the psychiatric population. However, there is currently neither feasibility study nor available prospective study available to inform of the safety, tolerability and efficacy of such for MDD in the palliative setting.Methods and analysisThis is an open-labelled, single arm, phase II pilot feasibility study involving adult patients with advanced life-limiting illnesses and MDD across four palliative care services in Australia. It has an individual dose-titration design (0.1–0.4 mg/kg) with weekly treatments of subcutaneous ketamine infusion over 2 hours. The primary outcome is feasibility. The secondary outcomes are related to the safety, tolerability and antidepressant efficacy of ketamine, participants’ satisfaction in relation to the trial process and the reasons for not completing the study at various stages. The feasibility data will be reported using descriptive statistics. Meanwhile, side effects, tolerability and efficacy data will be analysed using change of assessment scores from baseline.Ethics and disseminationEthics approval was acquired (South Western Sydney Local Health District: HREC/18/LPOOL/466). The results of this study will be submitted for publication in peer-reviewed journals and presented at relevant conferences.Trial registration numberAustralian New Zealand Clinical Trial Registry Number: ACTRN12618001586202; Pre-results.

Objective: The aim of this study was to describe the patterns of discharge and re-enrollment to a community palliative care service, and to identify factors associated with re-enrollment. Backgroun...

Background: Delirium is a common debilitating complication of advanced cancer. Objective: To determine if a multicomponent nonpharmacological delirium prevention intervention was feasible for adult patients with advanced cancer, before a phase III (efficacy) trial. Design: Phase II (feasibility) cluster randomized controlled trial. All sites implemented delirium screening and diagnostic assessment. Strategies within sleep, vision and hearing, hydration, orientation, mobility, and family domains were delivered to enrolled patients at intervention site admission days 1-7. Control sites then implemented the intervention ("waitlist sites"). Setting: Four Australian palliative care units. Measurements: The primary outcome was adherence, with an a priori endpoint of at least 60% patients achieving full adherence. Secondary outcomes were interdisciplinary care delivery, delirium measures, and adverse events, analyzed descriptively and inferentially. Results: Sixty-five enrolled patients (25 control, 20 intervention, and 20 waitlist) had 98% delirium screens and 75% diagnostic assessments completed. Nurses (67%), physicians (16%), allied health (8.4%), family (7%), patients (1%), and volunteers (0.5%) delivered the intervention. There was full adherence for 5% patients at intervention sites, partial for 25%. Both full and partial adherence were higher at waitlist sites: 25% and 45%, respectively. One-third of control site patients (32%) became delirious within seven days of admission compared to one-fifth (20%) at both intervention and waitlist sites (p = 0.5). Mean (standard deviation) Delirium Rating Scale-Revised-1998 scores were 16.8 + 12.0 control sites versus 18.4 + 8.2 (p = 0.6) intervention and 18.7 + 7.8 (p = 0.5) waitlist sites. The intervention caused no adverse events. Conclusion: The intervention requires modification for optimal adherence in a phase III trial.

BACKGROUND: Coeliac plexus block (CPB) is an interventional pain management option for patients with pancreatic or other upper abdominal malignancy. AIMS: To assess the safety, utilization, and outcomes of CPBs in the local context. METHODS AND RESULTS: We conducted a retrospective case series of all patients with cancer who underwent CPB at 4 Sydney teaching hospitals from March 2010 to February 2016. We recorded baseline demographic data, details of the injectate, procedural approach and survival, as well as pain scores and analgesic use at 4 time points of interest. Thirty‐nine procedures were performed during the study period. Twenty‐four were performed endoscopically, 14 were performed via a bilateral percutaneous posterior approach by Pain Specialists or Radiologists and 1 was performed intraoperatively by a Surgeon. Patients had experienced pain for a mean of 17 weeks prior to CPB. Prior to CPB, the mean pain score was 8.8 out of 10. The mean pain score was reduced at 48 hours, 2 weeks, and 4 weeks following CPB (P

Maintaining physical independence is important to terminally ill patients; rehabilitation can improve both functional status and quality of life (QOL) during palliative care. In this prospective pilot study, we evaluated changes in physical function, symptoms, and QOL among 19 hospitalized patients receiving palliative or terminal care for cancer (7 men and 12 women; mean age, 66.8 years, range, 44–84 years). Assessments were performed at admission and after 2 weeks, primarily using the Functional Independence Measure (FIM) and the McGill Quality of Life Questionnaire (MQOL), and a follow-up evaluation was performed 4 weeks after admission if possible. The study was from April to September 2013. In 19 patients, FIM responses were obtained from 17 and 7 patients at 2 and 4 weeks, respectively. MQOL responses were obtained from 11 and 5 patients at 2 and 4 weeks, respectively. A comparison of FIM scores at admission and 2 weeks revealed nonsignificant reductions in the total, motor, and cognitive elements (P = 0.46, 0.70, and 0.20, respectively), which remained nonsignificant at 4 weeks (P = 0.51, 0.65, and 0.27, respectively). There was no significant decline in the total MQOL between admission and 2 and 4 weeks. Although QOL was correlated with physical symptoms, it was not correlated with function. In conclusion, we showed that patient function did not significantly decline and that self-efficacy was maintained with our intervention. A multidisciplinary palliative care approach may reduce symptoms, thereby improving patient QOL. Achieving symptom control is still the mainstay of palliative care.

IntroductionDelirium is a significant medical complication for hospitalised patients. Up to one-third of delirium episodes are preventable in older inpatients through non-pharmacological strategies that support essential human needs, such as physical and cognitive activity, sleep, hydration, vision and hearing. We hypothesised that a multicomponent intervention similarly may decrease delirium incidence, and/or its duration and severity, in inpatients with advanced cancer. Prior to a phase III trial, we aimed to determine if a multicomponent non-pharmacological delirium prevention intervention is feasible and acceptable for this specific inpatient group.Methods and analysisThe study is a phase II cluster randomised wait-listed controlled trial involving inpatients with advanced cancer at four Australian palliative care inpatient units. Intervention sites will introduce delirium screening, diagnostic assessment and a multicomponent delirium prevention intervention with six domains of care: preserving natural sleep; maintaining optimal vision and hearing; optimising hydration; promoting communication, orientation and cognition; optimising mobility; and promoting family partnership. Interdisciplinary teams will tailor intervention delivery to each site and to patient need. Control sites will first introduce only delirium screening and diagnosis, later implementing the intervention, modified according to initial results. The primary outcome is adherence to the intervention during the first seven days of admission, measured for 40 consecutively admitted eligible patients. Secondary outcomes relate to fidelity and feasibility, acceptability and sustainability of the study intervention, processes and measures in this patient population, using quantitative and qualitative measures. Delirium incidence and severity will be measured to inform power calculations for a future phase III trial.Ethics and disseminationEthical approval was obtained for all four sites. Trial results, qualitative substudy findings and implementation of the intervention will be submitted for publication in peer-reviewed journals, and reported at conferences, to study sites and key peak bodies.Trial registration numberACTRN12617001070325; Pre-results.

Background 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. Methods A cross-sectional anonymous survey was administered from July to December 2015 online and in eight adult outpatient palliative care and/or cancer services. Respondents were eligible if they were ≥18 years, had advanced cancer and poor appetite/taste problems/weight loss and might consider participating in a medicinal cannabis trial. Survey items focused on medicinal rather than recreational cannabis use and did not specify botanical or pharmaceutical products. Items asked about previous medicinal cannabis use and preferences for delivery route and invited comments and concerns. Results There were 204 survey respondents, of whom 26 (13%) reported prior medicinal cannabis use. Tablets/capsules were the preferred delivery mode (n = 144, 71%), followed by mouth spray (n = 84, 42%) and vaporiser (n = 83, 41%). Explanations for preferences (n = 134) most commonly cited convenience (n = 66; 49%). A total of 82% (n = 168) of respondents indicated that they had no trial-related concerns, but a small number volunteered concerns about adverse effects (n = 14) or wanted more information/advice (n = 8). Six respondents volunteered a belief that cannabis might cure cancer, while two wanted assurance of efficacy before participating in a trial. Conclusion Justification of modes other than tablets/capsules and variable understanding about cannabis and trials will need addressing in trial-related information to optimise recruitment and ensure that consent is properly informed.

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.

BACKGROUND:Best practise care optimises survival and quality of life in patients with pancreatic cancer (PC), but there is evidence of variability in management and suboptimal care for some patients. Monitoring practise is necessary to underpin improvement initiatives. We aimed to develop a core set of quality indicators that measure quality of care across the disease trajectory. METHODS:A modified, three-round Delphi survey was performed among experts with wide experience in PC care across three states in Australia. A total of 107 potential quality indicators were identified from the literature and divided into five areas: diagnosis and staging, surgery, other treatment, patient management and outcomes. A further six indicators were added by the panel, increasing potential quality indicators to 113. Rated on a scale of 1-9, indicators with high median importance and feasibility (score 7-9) and low disagreement (

ObjectivesBreathlessness ‘crises’ in people with chronic respiratory conditions are a common precipitant for emergency department (ED) presentations, many of which might be avoided through improved self-management and support. This study sought insights from people with experience of ED ‘near misses’ where they considered going to the ED but successfully self-managed instead.Design and methodsA qualitative approach was used with a phenomenological orientation. Participants were eligible if they reported breathlessness on most days from a diagnosed respiratory condition and experience of ≥1 ED near miss. Recruitment was through respiratory support groups and pulmonary rehabilitation clinics. Semistructured interviews were conducted with each participant via telephone or face-to-face. Questions focused on ED-related decision-making, information finding, breathlessness management and support. This analysis used an integrative approach and independent coding by two researchers. Lazarus and Cohen’s Transactional Model of Stress and Coping informed interpretive themes.ResultsInterviews were conducted with 20 participants, 15 of whom had chronic obstructive pulmonary disease. Nineteen interviews were conducted via telephone. Analysis identified important factors in avoiding ED presentation to include perceived control over breathlessness, self-efficacy in coping with a crisis and desire not to be hospitalised. Effective coping strategies included: taking a project management approach that involved goal setting, monitoring and risk management; managing the affective dimension of breathlessness separately from the sensory perceptual and building three-way partnerships with primary care and respiratory services.ConclusionsIn addition to teaching non-pharmacological and pharmacological management of breathlessness, interventions should aim to develop patients’ generic self-management skills. Interventions to improve self-efficacy should ensure this is substantiated by transfer of skills and support, including knowledge about when ED presentation is necessary. Complementary initiatives are needed to improve coordinated, person-centred care. Future research should seek ways to break the cyclical relationship between affective and sensory-perceptual dimensions of breathlessness.

Objective: Hospice/palliative care patients may differ from better studied populations, and data from other populations cannot necessarily be extrapolated into hospice/palliative care clinical practice. Pharmacovigilance studies provide opportunities to understand the harms and benefits of medications in routine practice. Gabapentin, a γ-amino butyric acid analogue antiepileptic drug, is commonly prescribed for neuropathic pain in hospice/palliative care. Most of the evidence however relates to nonmalignant, chronic pain syndromes (diabetic neuropathy, postherpetic neuralgia, central pain syndromes, fibromyalgia). The aim of this study was to quantify the immediate and short-term clinical benefits and harms of gabapentin in routine hospice/palliative care practice. Design: Multisite, prospective, consecutive cohort. Population: 127 patients, 114 of whom had cancer, who started gabapentin for neuropathic pain as part of routine clinical care. Settings: 42 centres from seven countries. Data were collected at three time points-at baseline, at day 7 (and at any time; immediate and shortterm harms) and at day 21 (clinical benefits). Results: At day 21, the average dose of gabapentin for those still using it (n=68) was 653mg/24h (range 0-1800mg) and 54 (42%) reported benefits, of whom 7 (6%) experienced complete pain resolution. Harms were reported in 39/127 (30%) patients at day 7, the most frequent of which were cognitive disturbance, somnolence, nausea and dizziness. Ten patients had their medication ceased due to harms. The presence of significant comorbidities, higher dose and increasing age increased the likelihood of harm. Conclusions: Overall, 42% of people experienced benefit at a level that resulted in continued use at 21 days. Refereed/Peer-reviewed

Context Published literature has not defined the effectiveness of standardized educational tools that can be self-administered in the general oncology population with pain. Objectives We sought to determine if an educational intervention consisting of a video and/or booklet for adults with cancer pain could improve knowledge and attitudes about cancer pain management, pain levels, pain interference, anxiety, quality of life, and analgesic use. Methods Eligible participants had advanced cancer, a pain score ≥2 of 10 in the last week, English proficiency, an estimated prognosis of more than one month, and were receiving outpatient cancer treatment at participating hospitals. Participants completed baseline assessments and then were randomly allocated to receive a booklet, a video, both, or neither, in addition to standard care. Outcome measures at two and four weeks included the Barriers Questionnaire (BQ), Brief Pain Inventory, Global Quality of Life Scale, and Hospital Anxiety and Depression Scale. Adequacy of analgesia and severity of pain were assessed with the Pain Management Index and a daily pain diary. Results One hundred fifty-eight participants were recruited from 21 sites over 42 months. Baseline mean barriers scores were lower than reported in previous Australian studies at 1.33 (standard deviation: 0.92). Mean average pain and worst pain scores improved significantly in patients receiving both the video and booklet by 1.17 (standard error [SE]: 0.51, P=0.02) and 1.12 (SE: 0.57, P=0.05), respectively, on a 0–10 scale. The addiction subscale of the BQ score was improved by 0.44 (SE: 0.19) for participants receiving any part of the intervention (P=0.03). Conclusion Provision of a video and/or booklet for people with cancer pain was a feasible and effective adjunct to the management of cancer pain.

Definitive risk factors for constipation in palliative care remain poorly defined. A retrospective analysis of 211 admissions to a palliative care unit was undertaken, with the main aim being to identify some factors, which influence laxative prescription. On univariate analysis, significant unadjusted associations were found between two or more prescribed laxatives and a diagnosis of malignancy, morphine equivalent dose, type of illness phase and the subsequent phase type, length of phase, anticholinergic load imposed by medications, symptom severity and functional status. Multiple ordinal logistic regressions revealed the prescription of one laxative to be significantly associated with oral morphine-equivalent dose, total anticholinergic load (odds ratio [OR] 1.4, 95% CI = 1.0—2.0), disease progression to terminal phase and death (OR 0.1, 95% CI = 0.0—0.3), and length of phase (OR 1.1, 95% CI = 1.0—1.2). Similar results were obtained for the prescription of two or more laxatives. Two additional measures of function, toileting (OR 3.6, 95% CI = 1.6—8.2) and transfer (OR 0.4 95% CI = 0.2—0.9), also became significant. Total anticholinergic load was significantly associated with the prescription of a single laxative (OR 1.4, 95% CI = 1.0—2.0) and two or more laxatives (OR 1.8, 95% CI = 1.3—2.5) for each unit increase in anticholinergic load. Opioids and in particular opioids prescribed at higher doses, the total anticholinergic load associated with prescribed medications, the degree of impaired physical function of a person, their length of stay in a palliative care unit and their proximity to death were all strongly related to the prescription of laxatives.

Aims and objectives To explore nurse perceptions of the feasibility of integrating the Nursing Delirium Screening Scale into practice within the inpatient palliative care setting. Background Delirium occurs frequently in palliative care inpatient populations, yet is under-recognised. Exploring feasibility of delirium screening tools in this setting can provide insights into how recognition can be improved. Design This was a qualitative study using a focus group methodology. Method Four semi-structured focus groups were conducted with 21 nurses working in two Australian palliative care units. Focus groups were digitally recorded and transcribed verbatim. Thematic content analysis was used to analyse the data. Results Three major themes were identified: (1) Delirium screening using the Nursing Delirium Screening Scale is feasible, but then what? (2) Nuances, ambiguity and clinical complexity; and (3) Implementing structured processes requires firmer foundations. Themes describe how nurses perceived the Nursing Delirium Screening Scale to be an easy and brief screening tool which raised their awareness of delirium. They were largely willing to adopt it into practice, yet had uncertainty and misunderstandings of the tool specifically and delirium screening generally, application in a palliative care context, interventions for delirium and impact of screening on medical practice. Conclusion The Nursing Delirium Screening Scale is feasible for use in a palliative care inpatient setting, but requires investigation of its psychometric properties before routine use in this patient population. Relevance to clinical practice Nurses require understanding of delirium, tailored guidance and a united approach with doctors to support their effective use of a delirium screening tool in the palliative care unit. Delirium practice change in this setting will also require nurses to become more active leaders and collaborators within their interdisciplinary teams.

In brain tumours, brain metastases or advanced cancer; treatment with corticosteroids, side effects can add to symptoms. These are best assessed by patients, complementing clinical assessment. We assessed the feasibility and validity of the Dexamethasone Symptom Questionnaire–Chronic (DSQ-Chronic), patient and caregiver versions. A longitudinal cohort study was conducted, collecting clinician-rated toxicity, performance status, dexamethasone dose and DSQ-Chronic (patient and caregiver versions) at baseline, then 2, 4 and 8 weeks later. Patients had a primary malignant brain tumour, brain metastases, or advanced cancer; Karnofsky Performance Status ≥40 and predicted survival ≥8 weeks. Analysis included questionnaire completion rates, frequency and severity of dexamethasone-attributable side effects, agreement between patient and caregiver ratings, comparison with clinician-rated toxicity and correlation with performance status. Sixty-six patients were recruited (mean age 60 years), with their caregivers. Completion of questionnaires was over 90 % for the dyad at baseline but dropped over time, with caregiver completion rates higher at all timepoints. Agreement between patients and proxies was fair to moderate, and while proxies systematically overestimated symptom severity on DSQ-chronic total scores, the bias was less than 10 points. Patient and clinician agreement was higher for more objective symptoms. The DSQ-Chronic is feasible when the patient is relatively well. As capacity to complete the DSQ-Chronic diminishes, caregivers can be proxy-raters. Clinicians capture corticosteroid toxicities, which may not be obvious to the patient. The DSQ-Chronic, patient and caregiver versions, are useful tools to be used with clinician assessment.

Malignant psoas syndrome (MPS) was first described in 1990, and is characterized by proximal lumbosacral plexopathy, painful fixed flexion of the ipsilateral hip, and radiological or pathological evidence of ipsilateral psoas major muscle malignant involvement. There have been 23 case reports of MPS in medical journals. Despite being associated with a severe and difficult pain, there is no definitive approach to management presented in the palliative care literature. We review the relevant clinical features and the subsequent multidisciplinary pain management in relation to four new cases of malignant involvement of the psoas muscle, and the 23 case reports in the literature. We propose that MPS comprises a continuum of symptoms and signs related to the degree of anatomical destruction with associated inflammatory reaction and muscle spasm, and also the degree of lumbosacral plexopathy causing neuropathic pain. A protocol is presented for the management of the complex pain issues of MPS directed at likely mechanisms. The treatment options include opioids, agents for neuropathic pain, muscle relaxants to manage psoas muscle spasm, and anti-inflammatory agents to reduce peritumoral edema. Direct anti-tumor measures also need to be considered. Further prospective study is needed to validate the proposed methods of assessment and treatment.

Optimal communication has been identified by patients and their families as one of the most important aspects of medical care at the end-of-life (Steinhauser et al, 2000; Curtis et al, 2001; Wenrich et al, 2001). Medical practitioners tend to underestimate the information needs of cancer patients (Degner et al, 1997a). The information needs of individual patients vary (Leydon et al, 2000; Jenkins et al, 2001). Hence, a blanket policy of fully informing and involving all patients may not best serve their interests. Communication may be improved when patients are able to ask questions that are of greatest concern to them. Some health professionals encourage patients to write down their questions and bring them to medical appointments, but patients may not know what questions to ask or how to articulate their concerns. Butow et al (1994) explored the use of a question prompt list (QPL) given to cancer patients before their initial consultation with oncologists. A QPL is a structured list of questions for the patient to ask the doctor if they wish. It is designed to encourage patient participation during a medical consultation and to assist patients in acquiring information that is suited to their needs and at their own pace. This simple and inexpensive intervention has been found to promote question asking about prognosis in three separate studies (Butow et al, 1994; Brown et al, 1999, 2001). In the most recent of these studies (Brown et al, 2001), provided the oncologist specifically addressed questions in the QPL during the consultation, those patients who received the prompt list were significantly less anxious immediately after the consultation and had better recall and significantly shorter consultations.

Background: Clinicians are often faced with the dilemma of how best to manage patients with advanced dementia who present to the hospital with repeated episodes of aspiration pneumonia. Rarely, if at all, are the opinions of the group that is most likely to be directly affected, that is the older nursing home resident, sought. This study seeks to fill that gap. Aims: To study the choices and preferences of a group of elderly nursing home residents in the treatment of recurrent aspiration pneumonia on a background of severe disability from end-stage dementia. Methods: A descriptive cross-sectional interview study using a hypothetical scenario carried out in six nursing homes within eastern Sydney, from June to August 2000. Views and attitudes towards hospitali­zation, antibiotic use, tube feeding and other treatment measures, given a situation of recurrent aspiration pneumonia and end-stage dementia, were obtained. Results: Fifty-two elderly nursing home residents who were cognitively intact and not depressed were interviewed. Most of the subjects would prefer further hospital admissions (61.5%, P

Introduction: Real-world effectiveness of many medications has been poorly researched, including in hospice/palliative care. Directly extrapolating findings from other clinical settings may not yield robust clinical advice. Pharmacovigilance studies provide an opportunity to understand better the net impact of medications. The study aimed to examine immediate and short-term benefits and harms of pregabalin in routine practice for neuropathic pain in hospice/palliative care. Methods: A consecutive cohort of 155 patients from 62 centres in 5 countries was started on pregabalin and studied prospectively. Data were collected at three time points: baseline; day 7 (immediate, short-term harms); ad hoc reports of any harms ≤21 days; and day 21 (short-term benefits). Results: Median dose for 155 patients at day 21 was 150 mg/24 h. Benefits were reported by 61 patients (39%), of whom 11 (7%) experienced complete pain resolution. Harms were reported by 51 (35%) patients at or before 7 days, the most frequent of which were somnolence, fatigue, cognitive disturbance and dizziness. 10 patients (6%) ceased pregabalin due to harms, but 82 patients (53%) were being treated at 21 days. In regression modelling, people with worse baseline pain derived more benefit (OR=8.5 (95% CI 2.5 to 28.68). Conclusions: Pregabalin delivered benefit to many patients, with 4 of 10 experiencing pain reductions by 21 days. Harms, occurring in 1 in 3 patients, may be difficult to detect in clinical practice, as they mostly involve worsening of symptoms prevalent at baseline. Refereed/Peer-reviewed

Ureteric obstruction is not an uncommon complication of malignant disease or its treatment. We describe the effectiveness of a corticosteroid in a patient with bilateral ureteric obstruction from metastatic colon cancer causing acute renal failure. We presume that the effectiveness was because of its activity in reducing edema related to the tumor. Other modalities of treatment are discussed but each case requires individualization of treatment with due ethical consideration.

Introduction: Delirium in advanced cancer is prevalent, with limited prospective data to guide management. The aim was to survey current practice of specialists using two contrasting cases of delirium in cancer. Methods: A questionnaire was designed to identify investigations and treatment used, in relation to two cases. Results: Overall response rate ( n = 270) was 30%. Place of care: Only 35% of medical oncologists would consider care at home for a patient with reversible delirium compared with 66% of other specialists. Investigations: 85% specialists would order basic bloods, however, medical oncologists were more likely to use oxygen saturation and head computed tomography, psychogeriatricians more likely to order thyroid function and palliative medicine specialists less likely to order chest X-ray and urine culture. Greater than 40% of specialists would do no investigations for terminal delirium. Treatment: Medical oncologists use more pre-emptive therapies and more likely to use a benzodiazepine as agent of choice, and Palliative medicine specialists used significantly more neuroleptics to treat hypoactive symptoms of delirium. Discussion: The survey emphasise significant areas of variability in the management of delirium in advanced cancer. Furthermore, evidence to guide management in ways that draw on the strengths and knowledge of each specialty is urgently needed.

There are few data on the interactions of health care professionals with bereaved relatives. The objective of this study was to explore the current practice of health care professionals in oncology and palliative care in contacting bereaved relatives, and to elicit their views regarding the purpose, the optimal means, the format, timing, and content of these contacts. We conducted 28 in-depth, semi-structured interviews with health care professionals in Australia working in palliative care and oncology. The interviews were audiotaped and transcribed. Further interviews were conducted until no additional themes were raised. The narratives were analyzed using qualitative methodology. Most participants were in favor of contacting bereaved relatives after the death of a patient they had cared for. Some barriers to implementing these contacts were identified, including time constraints, institutional factors, and personal barriers. Contacts ranged from a personal phone call to a standardized letter. Timing of contacts varied from immediately after the death of the patient to several weeks later. Participants used words and phrases in these contacts that ranged from personal and individualized messages to standard phrases. Health care professionals emphasized the importance of contacting bereaved relatives after the death of a patient for whom they had cared. The format and content of current contacts vary widely, and there does not seem to be a gold standard approach. This area has been relatively unexplored and lacks adequate models for health care professionals. This study provides some insight into current practice and hopes to facilitate further discussion of this topic.

Prognostic and end-of-life communication is a vital skill for health care professionals caring for patients with progressive life-limiting illnesses, and their families. Expert opinion varies, and high-quality evidence on how best to discuss these issues with such patients and their caregivers is limited. These guidelines were developed to address these issues. The guidelines were developed through the following methods: - Systematic literature review of the best available evidence on discussion of prognosis and end-of-life issues; - Review of previous relevant guidelines and expert opinions in the literature; and - Refining of draft guidelines by an expert advisory panel. The key recommendations of these guidelines are for health professionals to consider the recommendations conveyed by the acronym PREPARED.

All patients receiving parenteral antibiotics in a palliative care unit were prospectively monitored over a 13-month period. Of 913 consecutive admissions, 41 patients received 43 courses of parenteral antibiotics. On 27 of 43 occasions, the use of parenteral antibiotics was considered helpful (62%), in eight cases it was considered unhelpful (19%) and in a further eight cases the outcome could not be assessed (19%). The sites of infection for which parenteral antibiotics were prescribed included urinary tract infections (37%), lower respiratory tract infections (26%), soft tissue/skin or wound infections (16%), purulent terminal respiratory secretions (5%) and other (16%). In this sample, urinary tract infections were more commonly associated with a positive outcome than other indications combined (88% versus 48%, respectively). There appeared to be no association between outcome of use and age of the patient (median age 70, range 37–90), underlying diagnosis (HIV versus advanced malignancy) and reason for admission (symptom control versus respite care versus terminal care). However, outcomes appeared to vary in this sample according to the palliative care phase of the patient at the time parenteral antibiotics were administered. Positive outcomes were more common in terminal- (83%) and stable-phase (71%) patients than deteriorating- (58%) or acute-phase (38%) patients. This survey demonstrates that in specific circumstances a beneficial role exists for the use of parenteral antibiotics in a palliative care setting. The establishment of appropriate guidelines is recommended.

The role of the general practitioner (GP) in providing palliative care in the community is of increasing importance. Concomitantly, there is more interaction between the palliative care support services and the GP. Even when there is input from the palliative care support services, there can be barriers that impede effective delivery of palliative care by the GP. These include poor communication between the GP and the supporting team, inaccessibility of the service and inadequate after-hours coverage. We carried out a postal survey to assess what experiences and perceptions GPs working within the Eastern Sydney Area had of our palliative care support service. The response was generally favourable, with most GPs finding the level of communication, accessibility, usefulness of advice given and degree of follow-up visits by the service to be adequate. However, an important number felt that we tended to over-hospitalise our patients.

The final three days of life of 50 consecutive patients on a busy integrated palliative care service is described, with regard to final cause of death, symptom control, drug prescription, retention of personal function, and other measures possibly relevant to dignity in dying. Good symptom relief was maintained without rapid or high escalation of doses of morphine or sedatives. Personal function was maintained in at least a moderate degree in the majority of patients. This study also illustrates some of the difficulties in describing and evaluating the concept of “dying with dignity”.