The experience of Australian aged care workers during a trial implementation of a palliative care outcomes programme.

End of life care is an essential part of the role of Australian aged care homes (ACHs). However, there is no national framework to support aged care staff in systematically identifying residents with palliative care needs or to routinely assess, respond to, and measure end of life needs. The Palliative Care Outcomes Collaboration (PCOC) is a national outcomes and benchmarking programme which aims to systematically improve palliative care for people who are approaching the end of life, and for their families and carers. The PCOC Wicking Model for Residential Aged Care was developed and piloted in four Australian ACHs. This paper reports on the qualitative findings from semi-structured interviews and focus groups conducted with ACH staff (N = 37) to examine feasibility. Thematic analysis identified three overarching themes about the pilot: (i) processes to successfully prepare and support ACHs; (ii) appropriateness of PCOC tools for the ACH setting; and (iii) realised and potential benefits of the model for ACHs. The lessons presented valuable insights to refine the PCOC Wicking Model and enrich understanding of the potential challenges and solutions for implementing similar programs within ACHs in future. The results suggest that key to successfully preparing ACHs for implementation of the PCOC Wicking Model is an authentic and well-paced collaborative approach with ACHs to ensure the resources, structures and systems are in place and appropriate for the setting. The PCOC Wicking Model for Residential Aged Care is a promising prototype to support ACHs in improving palliative and end of life care outcomes for residents and their carers.

Implementing patient-centred outcome measures in palliative care clinical practice for adults (IMPCOM): Protocol for an update systematic review of facilitators and barriers.

Background: Despite the development of patient-centred or patient-reported outcome measures (PCOMs or PROMs) in palliative and end-of-life care over recent years, their routine use in practice faces continuing challenges. Objective: To update a highly cited literature review, identify and synthesise new evidence on facilitators, barriers, lessons learned, PCOMs used, models of implementation, implementation outcomes, costs, and consequences of implementing PCOMs in palliative care clinical practice. Methods: We will search MEDLINE, PsycINFO, CINAHL, Embase, Emcare, SCI-Expanded, SSCI, ESCI, and BNI. The database search will be supplemented by a list of studies from the expert advisory committee, hand-searching of reference lists for included articles, and citations of the original review. We will include primary studies using a PCOM during clinical care of adult patients with advanced disease in palliative care settings and extract data on reported models of implementation, PCOMs, facilitators, barriers, lessons learned, costs, and implementation outcomes. Gough's Weight of Evidence Framework will be used to assess the robustness and relevance of the studies. We will narratively synthesise and tabulate the findings. This review will follow PRISMA, PRISMA-Abstract, PRISMA-P, and PRISMA-Search as the reporting guidelines. Source of funding: Marie Curie. The funder is not involved in designing or conducting this study. Protocol registration: CRD42023398653 (13/02/2023).

Who needs, receives and misses out on palliative and end-of-life care? A population-based study to identify needs and gaps in a regional health service.

Objective The aim of this study was to assess the unmet need for palliative and other end-of-life care, as well as the sociodemographic and diagnostic factors associated with suboptimal access, among residents in an Australian region. Methods A cross-sectional descriptive and analytical study was performed using non-identifiable linked data from four administrative and two clinical datasets. The study population comprised 3175 patients aged ≥15 years who died in hospital in 2016 and 2017. The main outcome measures were the proportion of decedents potentially benefitting from end-of-life care and receiving end-of-life care. Results An estimated 74.8% of decedents needed palliative or other end-of-life care in the year before death. Approximately 13.3% did not receive any end-of-life care despite its potential benefit. The highest proportions with 'unmet need' were decedents with chronic obstructive pulmonary disease (31.0%) and heart failure (26.3%). Adjusting for sociodemographic and diagnostic factors, access was lowest among those aged <65 years (adjusted odds ratio (aOR) 0.44; 95% confidence interval (CI) 0.31-0.64) and those with heart failure (aOR 0.58; 95% CI 0.47-0.72). Conclusions Estimates of need and access provide a sound basis for planning local palliative and end-of-life care services. These methods can be used on an ongoing basis to monitor service delivery. What is known about this topic? There is a small but expanding literature on estimating the need for palliative care at a population level. There is a lack of data regarding access to palliative and other end-of-life care across multiple settings (e.g. home, specialist palliative care unit, hospital) and patient groups (e.g. defined by sociodemographics and diagnostics). What does this paper add? The study builds on previously used methods for estimating the need for palliative care, with some refinements, including the addition of 'other clinical indications' and the use of weights to derive more realistic estimates. The estimates of need are consistent with recent estimates from Australia and overseas, whereas the estimates of access are similar to a recent Australian estimate, but higher than estimates from overseas. The gaps in access are highest among those with the major types of chronic organ failure, particularly heart and respiratory. What are the implications for practitioners? The study demonstrates how routinely collected data at a regional level can be used to estimate need and access to palliative and end-of-life care, in the hospital and in the community. These methods of estimating need and unmet need can be used to inform the planning and development of services, as well as to monitor progress with implementation of changes in service provision.

Preferred Place of Death-A Study of 2 Specialist Community Palliative Care Services in Australia.

Choice and preference are fundamental to person-centered care and supporting personal choice at the end of life should be a priority. This study analyzed the relationship between a person's preferred place of death and other individual variables that might influence their actual place of death by examining the activity of 2 specialist community palliative care services in Australia. This was a cross-sectional study of 2353 people who died between 01 August 2016-31 August 2018; 81% died in their preferred place. Sex, type of life-limiting illness, and length of time in care were the only variables significantly related to dying in one's preferred place. Women were more likely to die in their preferred place than men (84% v 78%) and people with a non-cancer diagnosis were 7% more likely to die in their preferred place than those with cancer, particularly when that place was their private residence (74% v 60%) or Residential Aged Care Facility (98% v 89%). Someone in care for 0-7 days had 4.2 times greater odds of dying in their preferred place (OR = 4.18, 2.20-7.94), and after 21 days in care, people had 4.6 greater odds of having a preference to die in a hospital (OR = 4.63, 3.58-5.99). Both community palliative care services have capacity and a model of care that is responsive to choice. These findings align with known referral patterns and disease trajectories and demonstrate that it is possible to support the majority of people in the care of community palliative care services to die in their preferred place.

Patient-reported outcome measurement of symptom distress is feasible in most clinical scenarios in palliative care: an observational study involving routinely collected data.

BACKGROUND: Implementation of routinely collected patient-reported outcome measures (PROMs) ensures patients' priorities are at the forefront of care planning and helps to standardize approaches to quality improvement. In palliative care, barriers to PROMs are widely known but what are not understood are the clinical and care settings in which patients are more likely to report and when proxy reporting is needed. OBJECTIVE: To examine the incidence of patient-reported symptom distress compared to the incidence of proxy reporting in palliative care and influencing factors. METHODS: A national observational study using routinely collected PROMs data with influencing factors investigated by logistic regression modelling. Participants were patients with an advanced life-limiting illness receiving palliative care in an inpatient or a community healthcare setting in Australia. RESULTS: Sixteen thousand one hundred and fifty-eight reports of symptom distress were collected from 1117 patients seen by 21 palliative care services. The majority of respondents were diagnosed with cancer (76%), were older (≥65 years, 72%) and had nominated English as their first language (88%). The majority of symptom distress reports were completed by patients (61%). The odds of a patient providing a self-report where grater when they were receiving community versus inpatient palliative care (odds ratio (OR): 3.0; 95% confidence interval (CI): 2.25-4.01), for patients diagnosed with malignant versus non-malignant disease (OR 1.7; 95% CI: 1.26-2.31), and for those who required an urgent change in their care plan versus those whose symptoms and problems were adequately managed (OR: 1.38; 95% CI: 1.04-1.83). CONCLUSION: Three factors are associated with an increased likelihood of patient versus proxy reporting in palliative care: healthcare setting, diagnosis, and the acuity and urgency of the patient's clinical needs. PROMs are feasible in most clinical scenarios in palliative care, including when an urgent clinical response is required.

The PCOC Symptom Assessment Scale (SAS): A valid measure for daily use at point of care and in palliative care programs.

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.

Comparing functional decline and distress from symptoms in people with thoracic life-limiting illnesses: lung cancers and non-malignant end-stage respiratory diseases.

BACKGROUND: Malignant and non-malignant respiratory diseases account for >4.6 million deaths annually worldwide. Despite similar symptom burdens, serious inequities in access to palliative care persists for people with non-malignant respiratory diseases. AIM: To compare functional decline and symptom distress in advanced malignant and non-malignant lung diseases using consecutive, routinely collected, point-of-care national data. SETTING/PARTICIPANTS: The Australian national Palliative Care Outcomes Collaboration collects functional status (Australia-modified Karnofsky Performance Status (AKPS)) and symptom distress (patient-reported 0-10 numerical rating scale) in inpatient and community settings. Five years of data used Joinpoint and weighted scatterplot smoothing. RESULTS: In lung cancers (89 904 observations; 18 586 patients) and non-malignant end-stage respiratory diseases (14 827 observations; 4279 patients), age at death was significantly lower in people with lung cancer (73 years; IQR 65-81) than non-malignant end-stage respiratory diseases (81 years; IQR 73-87 years; p<0.001). Four months before death, median AKPS was 40 in lung cancers and 30 in non-malignant end-stage respiratory diseases (p<0.001). Functional decline was similar in the two groups and accelerated in the last month of life. People with non-malignant diseases accessed palliative care later.Pain-related distress was greater with cancer and breathing-related distress with non-malignant disease. Breathing-related distress increased towards death in malignant, but decreased in non-malignant disease. Distress from fatigue and poor sleep were similar for both. CONCLUSIONS: In this large dataset unlike previous datasets, the pattern of functional decline was similar as was overall symptom burden. Timely access to palliative care should be based on needs not diagnoses.

Palliative care is effective: but hospital symptom outcomes superior.

OBJECTIVES: To explore differences in severe symptom outcomes for palliative care patients receiving hospital care compared with those receiving care at home. METHODS: Change in symptom distress from the start of an episode of palliative care to just prior to death was measured for 25 679 patients who died under the care of a hospital or home-based palliative care team between January 2015 and December 2016. Logistic regression models controlled for differences between hospital and home and enabled a comparison of the number of severe symptoms just prior to death. RESULTS: All symptoms improved and over 85% of all patients had no severe symptoms prior to death. Pain control illustrates this with 7.4% of patients reporting severe pain distress at episode start and 2.5% just prior to death. When comparing all symptom outcomes by place of death, hospital patients are 3.7 times more likely than home patients to have no severe symptoms. CONCLUSION : Symptom outcomes are better for hospital patients. Patients at home have less improvement overall and some symptoms get worse. Reasons for the difference in outcomes by hospital and home are multifactorial and must be considered in relation to the patient's right to choose their place of care.

Is Inpatient Hospice Care Clinically Effective? Using Phase of Illness to Evaluate Care Outcomes for Patients Admitted to a Specialist Palliative Care Unit in Ireland.

Background: In health care, clinical effectiveness involves evaluating the degree to which clinical interventions achieve beneficial patient and caregiver outcomes. Objective: To evaluate the clinical effectiveness of care in a specialist palliative care unit (SPCU) in Ireland, including an analysis of the temporal relationship among admission, Phase of Illness and patient and family distress. Design/Measurements: A consecutive case series with prospectively collected admission data (n = 400). Using a casemix tool (Phase of Illness), pain, other symptoms, psychological and family distress, and performance status were documented on admission and then daily by medical staff. Results: Three hundred forty-two (85%) patients had complete data recorded on day 1. After admission, there were linear correlations between days since admission and progressive improvements in pain (Cramer's V = 0.131, p < 0.001), other symptoms (V = 0.206, p < 0.001), psychological distress (V = 0.101, p < 0.001), and family distress (V = 0.124, p < 0.001). Forty-three percent were in an unstable phase on admission. Nearly two thirds (60.7%) of these unstable patients converted to a stable phase within 48 hours of admission. Over the first 72 hours, 70.7% of unstable patients converted to a stable phase. There was also a significant correlation between phase stabilization and pain and symptom control (p = 0.007). Stable phase over the first 4 days and first 14 days was associated with significantly higher performance status. Conclusion: This study demonstrates the significant clinical effectiveness of SPCU admission across the different aspects of patient and family care.

Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique.

BACKGROUND: When capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden. AIM: To determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured. DESIGN: An international expert consensus workshop using nominal group technique. Data were analysed descriptively, and weighted according to ranking (1-5, lowest to highest priority) of domains. Participants' rationales for their choices were analysed thematically. SETTING/PARTICIPANTS: In all, 33 clinicians and researchers working globally in palliative care outcome measurement participated. Two groups (n = 16; n = 17) answered one question each (either on domains or optimal timing). This workshop was conducted at the 9th World Research Congress of the European Association for Palliative Care in 2016. RESULTS: Participants' years of experience in palliative care and in outcome measurement ranged from 10.9 to 14.7 years and 5.8 to 6.4 years, respectively. The mean scores (weighted by rank) for the top-ranked domains were 'overall wellbeing/quality of life' (2.75), 'pain' (2.06), and 'information needs/preferences' (2.06), respectively. The palliative measure 'Phase of Illness' was recommended as the preferred measure of time period over which the domains were measured. CONCLUSION: The domains of 'overall wellbeing/quality of life', 'pain', and 'information needs/preferences' are recommended for regular measurement, assessed using 'Phase of Illness'. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.

Development and validation of a casemix classification to predict costs of specialist palliative care provision across inpatient hospice, hospital and community settings in the UK: a study protocol.

INTRODUCTION: Provision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision. METHODS AND ANALYSIS: Phase I: A cohort study to determine the variables and potential classes to be included in a casemix classification. Data are collected from clinicians in palliative care services across inpatient hospice, hospital and community settings on: patient demographics, potential complexity/casemix criteria and patient-level resource use. Cost predictors are derived using multivariate regression and then incorporated into a classification using classification and regression trees. Internal validation will be conducted by bootstrapping to quantify any optimism in the predictive performance (calibration and discrimination) of the developed classification. Phase II: A mixed-methods cohort study across settings for external validation of the classification developed in phase I. Patient and family caregiver data will be collected longitudinally on demographics, potential complexity/casemix criteria and patient-level resource use. This will be triangulated with data collected from clinicians on potential complexity/casemix criteria and patient-level resource use, and with qualitative interviews with patients and caregivers about care provision across difference settings. The classification will be refined on the basis of its performance in the validation data set. ETHICS AND DISSEMINATION: The study has been approved by the National Health Service Health Research Authority Research Ethics Committee. The results are expected to be disseminated in 2018 through papers for publication in major palliative care journals; policy briefs for clinicians, commissioning leads and policy makers; and lay summaries for patients and public. TRIAL REGISTRATION NUMBER: ISRCTN90752212.

Perceptions of the care received from Australian palliative care services: A caregiver perspective.

ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. OBJECTIVE: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. METHOD: Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. RESULTS: Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). SIGNIFICANCE OF RESULTS: While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

Identification of the trajectory of functional decline for advance care planning in a nursing home population.

OBJECTIVE: To identify diagnostic groups and the form of the trajectory of functional decline that has the potential to enhance advance care planning (ACP) in a nursing home (NH) population. METHODS: Retrospective, longitudinal study with dependent variable (function) derived from the Resident Classification Scale (RCS), 1997-2008. Trajectory modelling used linear and curvilinear terms. RESULTS: The organ failure or other residents have a linear average functional decline. The organ failure residents had an average decline of 6.5 points per year and average function score at death of 68.6, CI [62.4, 74.8]. The cancer and frailty residents had significant curvilinear terms. The frailty residents had a slower rate of decline at 9.54 points per year and were most care dependent at death, with an average function score of 77.1, CI [73.8, 80.9]. CONCLUSION: Functional change is a measurable variable for a predictive tool to enhance ACP for NH residents based on their diagnosis.

Physical Symptoms at the Time of Dying Was Diagnosed: A Consecutive Cohort Study To Describe the Prevalence and Intensity of Problems Experienced by Imminently Dying Palliative Care Patients by Diagnosis and Place of Care.

OBJECTIVE: The aim of this work was to analyze routine assessments recorded, when a patient was documented as likely to die in hours to days, to determine the prevalence, intensity, and associations of physical symptoms. BACKGROUND: Although death inevitably occurs, very little prospective data describe at population level the physical symptoms confronting imminently dying people. METHODS: Using prospectively collected data from participating palliative care services in the Australian Palliative Care Outcomes Collaboration between July 1, 2013, and December 31, 2014, factors associated with worse symptom experiences were explored using logistic regression modeling. RESULTS: The experiences of 18,975 patients who died after being identified as imminently terminal were analyzed, with 75% (n = 14,238) of these being cancer deaths. Seventy percent (n = 13,051) occurred in a palliative care unit, 8.7% (n = 1657) in an acute hospital with palliative care support, and 22.5% (n = 4266) at home. More than half were assessed as experiencing acceptable symptom control especially those with nonmalignant disease. The notable exception was breathing problems, where compared to cancer patients, those with nonmalignant disease were 34% more likely to experience distressing breathlessness (odds ratio 1.34; 95% confidence interval 1.23-147). Regardless of the cause, deaths in a community setting were more likely to be complicated by more severe symptoms with the exception of breathlessness, where those dying in acute hospitals were most likely to be assessed as requiring further help. DISCUSSION: The terminal phase is perceived as a time where the majority will experience distressing symptoms, but this work suggests a contrary view. However, there did seem to be a detrimental effect depending on place of care with more significant problems recorded when people were dying at home. More work is needed to clarify this given the current push for more home deaths.

Breathlessness During the Last Week of Life in Palliative Care: An Australian Prospective, Longitudinal Study.

CONTEXT: Breathlessness is a major cause of suffering and distress, and little is known about the trajectory of breathlessness near death. OBJECTIVES: To determine the trajectory and clinical-demographic factors associated with breathlessness in the last week of life in patients receiving specialist palliative care. METHODS: This was a prospective, longitudinal cohort study using national data on specialist palliative care from the Australian Palliative Care Outcomes Collaboration. We included patients in the Australian Palliative Care Outcomes Collaboration who died between July 1, 2013 and June 30, 2014 with at least one measurement of breathlessness on a 0-10 numerical rating scale in the week before death. The trajectory and factors associated with breathlessness were analyzed using multivariate random-effects linear regression. RESULTS: A total 12,778 patients from 87 services (33,404 data points) were analyzed. The average observed breathlessness was 2.1 points and remained constant over time. Thirty-five percent reported moderate to severe distress (numerical rating scale ≥4) at some time in their last week. Factors associated with higher breathlessness were younger age, male gender, cardiopulmonary involvement, concurrent fatigue, nausea, pain, sleeping problems, higher Australia-modified Karnofsky Performance Status, and clinical instability in the multivariate analysis. Respiratory failure showed the largest association (mean adjusted difference 3.1 points; 95% confidence interval, 2.8-3.4). CONCLUSION: Although breathlessness has been reported to worsen in the last months, the mean severity remained stable in the final week of life. In specialized palliative care, one in three people experienced significant breathlessness especially in respiratory disease.

Palliative Care Problem Severity Score: Reliability and acceptability in a national study.

BACKGROUND: The Palliative Care Problem Severity Score is a clinician-rated tool to assess problem severity in four palliative care domains (pain, other symptoms, psychological/spiritual, family/carer problems) using a 4-point categorical scale (absent, mild, moderate, severe). AIM: To test the reliability and acceptability of the Palliative Care Problem Severity Score. DESIGN: Multi-centre, cross-sectional study involving pairs of clinicians independently rating problem severity using the tool. SETTING/PARTICIPANTS: Clinicians from 10 Australian palliative care services: 9 inpatient units and 1 mixed inpatient/community-based service. RESULTS: A total of 102 clinicians participated, with almost 600 paired assessments completed for each domain, involving 420 patients. A total of 91% of paired assessments were undertaken within 2 h. Strength of agreement for three of the four domains was moderate: pain (Kappa = 0.42, 95% confidence interval = 0.36 to 0.49); psychological/spiritual (Kappa = 0.48, 95% confidence interval = 0.42 to 0.54); family/carer (Kappa = 0.45, 95% confidence interval = 0.40 to 0.52). Strength of agreement for the remaining domain (other symptoms) was fair (Kappa = 0.38, 95% confidence interval = 0.32 to 0.45). CONCLUSION: The Palliative Care Problem Severity Score is an acceptable measure, with moderate reliability across three domains. Variability in inter-rater reliability across sites and participant feedback indicate that ongoing education is required to ensure that clinicians understand the purpose of the tool and each of its domains. Raters familiar with the patient they were assessing found it easier to assign problem severity, but this did not improve inter-rater reliability.

A survey of patients' experience of pain and other symptoms while receiving care from palliative care services.

CONTEXT: In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings. OBJECTIVE: To explore patients' levels of pain and other symptoms while receiving care from PCSs. METHOD: PCSs registered through Australia's national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale. RESULTS: Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe 'other symptoms', 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients. CONCLUSIONS: Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as 'severe'. Our findings highlight the importance of routine, comprehensive assessment of patients' concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting.

Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking.

PURPOSE: Every health care sector including hospice/palliative care needs to systematically improve services using patient-defined outcomes. Data from the national Australian Palliative Care Outcomes Collaboration aims to define whether hospice/palliative care patients' outcomes and the consistency of these outcomes have improved in the last 3 years. METHODS: Data were analysed by clinical phase (stable, unstable, deteriorating, terminal). Patient-level data included the Symptom Assessment Scale and the Palliative Care Problem Severity Score. Nationally collected point-of-care data were anchored for the period July-December 2008 and subsequently compared to this baseline in six 6-month reporting cycles for all services that submitted data in every time period (n = 30) using individual longitudinal multi-level random coefficient models. RESULTS: Data were analysed for 19,747 patients (46 % female; 85 % cancer; 27,928 episodes of care; 65,463 phases). There were significant improvements across all domains (symptom control, family care, psychological and spiritual care) except pain. Simultaneously, the interquartile ranges decreased, jointly indicating that better and more consistent patient outcomes were being achieved. CONCLUSION: These are the first national hospice/palliative care symptom control performance data to demonstrate improvements in clinical outcomes at a service level as a result of routine data collection and systematic feedback.

Palliative Care Phase: inter-rater reliability and acceptability in a national study.

BACKGROUND: The concept of palliative care consisting of five distinct, clinically meaningful, phases (stable, unstable, deteriorating, terminal and bereavement) was developed in Australia about 20 years ago and is used routinely for communicating clinical status, care planning, quality improvement and funding. AIM: To test the reliability and acceptability of revised definitions of Palliative Care Phase. DESIGN: Multi-centre cross-sectional study involving pairs of clinicians independently rating patients according to revised definitions of Palliative Care Phase. SETTING/PARTICIPANTS: Clinicians from 10 Australian palliative care services, including 9 inpatient units and 1 mixed inpatient/community-based service. RESULTS: A total of 102 nursing and medical clinicians participated, undertaking 595 paired assessments of 410 patients, of which 90.7% occurred within 2 h. Clinicians rated 54.8% of patients in the stable phase, 15.8% in the unstable phase, 20.8% in the deteriorating phase and 8.7% in the terminal phase. Overall agreement between clinicians' rating of Palliative Care Phase was substantial (kappa = 0.67; 95% confidence interval = 0.61-0.70). A moderate level of inter-rater reliability was apparent across all participating sites. The results indicated that Palliative Care Phase was an acceptable measure, with no significant difficulties assigning patients to a Palliative Care Phase and a good fit between assessment of phase and the definition of that phase. The most difficult phase to distinguish from other phases was the deteriorating phase. CONCLUSION: Policy makers, funders and clinicians can be confident that Palliative Care Phase is a reliable and acceptable measure that can be used for care planning, quality improvement and funding purposes.