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Background: Patients are frequently admitted to hospital in the last year of life. Actively recognising patients at this stage gives the opportunity to plan future care., Methods: We performed a cross-sectional survey of all acute medical and surgical inpatients at one tertiary hospital. Two simple screening tools, the indicators for a palliative approach and the surprise question identified a group of patients at greatly increased risk of dying over the next year., Results: The one-year mortality of the study group was 27%, however was 52% and 65% for those identified at risk by the indicators for a palliative approach and surprise question tools. The surprise question had an area under the receiver operator curve value of .84., Conclusion: These screening tools could be used to help clinicians identify hospital inpatients that would benefit from advance care planning and a tailored approach to their care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases., Aim: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics., Design: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs., Setting/participants: Adult national survey respondents - England., Results: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only., Conclusion: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Chronic obstructive pulmonary disease (COPD) is a progressive, life-limiting condition. End-of-life (EOL) and Advance Care Planning (ACP) discussions are essential, yet access and support remain inadequate. Allied health professionals (AHPs) commonly have ongoing relationships with patients and opportunities to discuss care outside acute crises as is considered best practice. Australian and New Zealand AHPs were invited to complete an anonymous, online, cross-sectional survey that aimed to explore knowledge, attitudes and practices, and associated perceived triggers and barriers to EOL and ACP discussions with patients with COPD. Closed survey responses were summarized descriptively and free-text thematically analysed. One hundred and one AHPs (physiotherapists, social workers and occupational therapists) participated. Many held positive attitudes towards ACP but lacked procedural knowledge. Half (50%) of participants routinely discussed EOL care with patients when perceiving this to be appropriate but only 21% actually discussed ACP with the majority of their patients. Many cited lack of training to engage in sensitive EOL discussions, with barriers including: 1) clinician lack of confidence/fear of distressing patients (75%); 2) perceived patient and family reluctance (51%); 3) organizational challenges (28%); and 4) lack of role clarity (39%). AHPs commonly have ongoing relationships with patients with chronic conditions but lack the confidence and role clarity to utilise this position to engage ongoing EOL and ACP discussions. While AHPs may not traditionally consider EOL and ACP discussions as part of their role, it is crucial that they feel prepared to respond if patients broach the topic.

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

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

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

Patient-defined factors that are important at the end of life include being physically independent for as long as possible, good symptom control, and spending quality time with friends and family. Hospice care adds to the quality of care and these patient-centered priorities for people with cancer and their families in the last weeks and days of life. Evidence from large observational studies demonstrate that hospice care can improve outcomes directly and support better and more appropriate health care use for people in the last stages of cancer.Team-based community hospice care has measurable benefits for patients, their family caregivers, and health services. In addition to improved symptom control for patients and a greater likelihood of time spent at home, caregiver outcomes are better when hospice care is accessed: informational needs are better met, and caregivers have an improved ability to move on with life after the patient's death compared with people who did not have access to these services.Hospice care continues to evolve as its reach expands and the needs of patients continue to broaden. This is reflected in the transition from hospice being based on excellence in nursing to teams with a broad range of health professionals to meet the complex and changing needs of patients and their families. Additional integration of cancer services with hospice care will help to provide more seamless care for patients and supporting family caregivers during their caregiving and after the death of the patient.

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

INTRODUCTION There is evidence that people with nonmalignant disease receive poorer end‑of‑life (EOL) care compared with people with cancer. OBJECTIVES The aim of the study was to assess the selected aspects of symptomatic treatment and communication between physicians and patients diagnosed with either advanced chronic obstructive pulmonary disease (COPD) or lung cancer. METHODS A questionnaire survey was conducted online among members of the Polish Respiratory Society. RESULTS Properly completed questionnaires were returned by 174 respondents (27.2% of those proved to be contacted by email). In COPD, 32% of respondents always or often used opioids in chronic breathlessness and 18.3% always or often referred patients to a palliative care (PC) specialist. Nearly 80% of the respondents claimed that bedside discussions on EOL issues with people with COPD are essential, although only 20% would always or often initiate them. In people with lung cancer, opioids were routinely used for relief of chronic breathlessness by 80% of physicians; 81.7% referred patients to a PC specialist. More than half of the respondents always or often discussed EOL issues only with the patient's caregivers or relatives. Younger physicians, those at an earlier stage of their career, those caring for higher numbers of patients with lung cancer, and those who were better acquainted with Polish Respiratory Society recommendations for PC in chronic lung diseases seemed to provide better EOL care for COPD patients. CONCLUSIONS Patients with COPD, as compared with patients with lung cancer, were less frequently treated with opioids to relieve chronic breathlessness or referred for a PC consultation. Discussing the EOL issues with a patient was generally found challenging by physicians, and most often pursued with caregivers instead. The COPD recommendations on PC may prove helpful in providing better EOL care by pulmonologists.

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

Background: Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment., Aim: We compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age., Design: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care., Setting/participants: Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years., Results: Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to 'move on' with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to 'move on'., Conclusion: Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.

Background: Telehealth is being used increasingly in providing care to patients in the community setting. Telehealth enhanced service delivery could offer new ways of managing load and care prioritisation for palliative care patients living in the community. The study assesses the feasibility of a telehealth-based model of service provision for community based palliative care patients, carers and clinicians., Methods: This study was a prospective cohort study of a telehealth-based intervention for community based patients of a specialist palliative care service living in Southern Adelaide, South Australia. Participants were 43 community living patients enrolled in the Southern Adelaide Palliative Service. To be eligible patients needed to be over 18 years and have an Australian modified Karnofksy Performance Score > 40. Exclusion criteria included a demonstrated inability to manage the hardware or technology (unless living with a carer who could manage the technology) or non-English speaking without a suitable carer/proxy. Participants received video-based conferences between service staff and the patient/carer; virtual case conferences with the patient/carer, service staff and patient's general practitioner (GP); self-report assessment tools for patient and carer; and remote activity monitoring (ACTRN12613000733774)., Results: The average age of patients was 71.6 years (range: 49 to 91 years). All 43 patients managed to enter data using the telehealth system. Self-reported data entered by patients and carers did identify changes in performance status leading to changes in care. Over 4000 alerts were generated. Staff reported that videocalls were similar (22.3%) or better/much better (65.2%) than phone calls and similar (63.1%) or better/much better (27.1%) than face-to-face. Issues with the volume of alerts generated, technical support required and the impact of service change were identified., Conclusions: The trial showed that patients and carers could manage the technology and provide data that would otherwise not have been available to the palliative care service., Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12613000733774 registered on 02/07/2013.

Context: Anticholinergic drugs can cause several side effects, impairing cognition and quality of life (QOL). Cancer patients are often exposed to increasing cumulative anticholinergic load (ACL) as they approach death, but this burden has not been examined in patients with nonmalignant diseases., Objectives: To determine ACL and its impact in noncancer versus cancer palliative care patients., Methods: We performed a secondary analysis of 244 subjects enrolled in a randomized controlled trial. ACL was quantified with the Anticholinergic Drug Scale. We used multivariable regression to calculate the effect of ACL on key outcomes, including drowsiness, fatigue, and QOL. Patients were stratified by diagnosis, and drugs were grouped as symptom management (SM) or disease management (DM)., Results: Overall, ACL in cancer and noncancer patients was not significantly different (2.6 vs. 2.4; P = 0.23). SM drugs caused greater anticholinergic exposure than DM drugs in both cancer and noncancer patients (2.3 vs. 0.5, and 1.5 vs. 1.3, respectively; both P < 0.05); however, DM drugs exposed noncancer patients to relatively more ACL than cancer patients (1.2 vs. 0.6, P < 0.0001). ACL was associated with worse fatigue (odds ratio, 1.08; CI, 1.002-1.17) and worse QOL (odds ratio, 0.89; CI, 0.80-0.98)., Conclusions: ACL is associated with worse fatigue and QOL and may not differ significantly between cancer and noncancer patients nearing end of life. SM drugs are more responsible for ACL in cancer and noncancer patients, although DM drugs contribute significantly to ACL in the latter group. We recommend more attention to reducing anticholinergic use in all patients with life-limiting illness., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Rationale: Advanced fibrosing interstitial lung disease (ILD) is often progressive and associated with a high burden of symptoms and poor prognosis. Little is known about the symptom prevalence and access to palliative care services at end of life (EOL)., Objectives: Compare prevalence of symptoms and palliative treatments between patients dying with oxygen-dependent ILD and patients dying of lung cancer., Methods: Nationwide registry-based cohort study of patients with oxygen-dependent ILD and patients with lung cancer who died between 1 January 2011 and 14 October 2013. Prevalence of symptoms and treatments during the last seven days of life were compared using data in Swedish Registry of Palliative Care., Measurements and Main Results: 285 patients with ILD and 10 822 with lung cancer were included. In ILD, death was more likely to be 'unexpected' (15% vs 4%), less likely to occur in a palliative care setting (17% vs 40%) and EOL discussions with the patients (41% vs 59%) were less common than in lung cancer. Patients with ILD suffered more from breathlessness (75% vs 42%) while patients with lung cancer had more pain (51% vs 73%) (p<0.005 for all comparisons). Patients with ILD had more unrelieved breathlessness, pain and anxiety. The survival time from initiation of oxygen therapy in ILD was a median 8.4 months (IQR 3.4-19.2 months)., Conclusions: Patients with ILD receive poorer access to specialist EOL care services and experience more breathlessness than patients with lung cancer. This study highlights the need of better EOL care in oxygen-dependent ILD., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

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., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: To investigate relationships between age, clinical characteristics, and breathlessness sufficient to have people spend at least half a day a month in bed or to cut down on their usual activities (restricting breathlessness) during the last year of life., Design: Secondary data analysis., Setting: General community., Participants: Nondisabled persons aged 70 and older (N=754)., Measurements: Monthly telephone interviews were conducted to determine the occurrence of restricting breathlessness. The primary outcome was percentage of months with restricting breathlessness reported during the last year of life., Results: Data regarding breathlessness were available for 548 of 589 (93.0%) participants who died (mean age 86.7, range 71-106; 38.8% male) between enrollment (March 1998 to October 1999) and June 2013; 311 of these (56.8%) reported restricting breathlessness at some point during the last year of life, but none reported it every month. Frequency increased in the months closer to death, irrespective of cause. Restricting breathlessness was associated with anxiety (0.25 percentage points greater in months with breathlessness per percentage point months reported anxiety, 95% confidence interval (CI)=0.16-0.34, P<.001), depression (0.14, 95% CI=0.05-0.24, P=.003), and mobility problems (0.07, 0.03-0.1, P<.001). Percentage months of restricting breathlessness was greater if chronic lung disease was noted at the most-recent comprehensive assessment (6.62 percentage points, 95% CI=4.31-8.94, P<.001), heart failure (3.34 percentage points, 95% CI=0.71-5.97, P=.01), and ex-smoker status (3.01 percentage points, 95% CI=0.94-5.07, P=.004) but decreased with older age (-0.19 percentage points, 95% CI=-0.37 to -0.02, P=.03)., Conclusion: Restricting breathlessness increased in this elderly population in the months preceding death from any cause. Breathlessness should be assessed and managed in the context of poor prognosis., (© 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.)

Objective: Cancer is one of the most common health conditions in receipt of informal caregiving. This study compares key characteristics of caregivers who cared for someone with cancer until death with caregivers of people with other life-limiting illnesses and their care recipients irrespective of health service utilisation., Method: Data were analysed from annual state-wide South Australian Health Omnibus Surveys (2000-2007) involving 14,624 respondents, regarding end of life care. Descriptive and comparative data are presented., Results: Almost a third of respondents (32%; participation rate 72%) had someone close to them die from an 'expected' death in the preceding 5 years. One in 10 (10%) respondents reported providing hands-on care predominantly for someone with cancer. Compared with non-cancer caregivers, cancer caregivers cared for someone who was significantly younger (mean age 66 (95% CI 64 to 67) years vs 74 (95% CI 72 to 77) years; one-way analysis of variance p<0.0001) and were more likely to report having a hospice/palliative care service involved in the care of the deceased (65% (95% CI 63 to 67) compared with 39% (95% CI 37 to 42). In the Australian context, this may mean contact with inpatient, outpatient and community-based services.There were no differences between the needs which caregivers perceived to be unmet or the perceptions that no additional supports were required between the two groups., Conclusions: Informal caregivers perform a critical social and economic role in care provision. Cancer caregivers are a proportionally larger cohort than non-cancer caregivers. With the increasing incidence of cancer, the sustainability of a voluntary cancer caregiving workforce will be reliant upon minimising the burden of care., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Context: The gap between informal caregivers' expectations of caregiving at the end of life and their actual caregiving experience has important affective and behavioral consequences., Objectives: This study analyzes for the first time the characteristics of those caregivers who report a worse or much worse than expected caregiving experience, providing a potential for future targeted intervention into the caregiving experience., Methods: The South Australian Health Omnibus is an annual, random, face-to-face, and cross-sectional survey. From 2000 to 2007, respondents were asked a range of questions about end-of-life care, including in several years a question about how the caregiving experience compared with caregivers' expectation(s). Family members and friends who reported a worse or much worse than expected caregiving experience were the focus of this analysis. Univariable and multivariable logistic regression models were created to better define this group., Results: Of the 1628 active caregivers for people at the end of life, almost half (48.3%) reported a worse or much worse than expected caregiving experience. A worse or much worse than expected caregiving experience was significantly associated with gender and with level of care provided. Women who provided daily hands-on care were significantly more likely to have a worse than expected experience compared with women who provided intermittent care (odds ratio [OR] 0.65; 95% CI 0.48-0.88; P = 0.005) or rare care (OR 0.39; 95% CI 0.27-0.56; P < 0.001). Of all those providing rare care, women were significantly less likely than men to report a worse than expected caregiving experience (OR 0.61; 95% CI 0.41-0.93; P = 0.020)., Conclusion: Caregiver expectations represent a novel and important focus for investigation into the caregiver experience. Explicitly eliciting expectations may in future lead to ways of better supporting caregivers., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Polypharmacy is a well known problem in elderly patients in general, but its prevalence and effects in patients with cancer are less clear, particularly in end-of-life settings. This Review examines the existing literature on polypharmacy in advanced cancer and end-of-life settings by reviewing evidence-based approaches to reduce polypharmacy, and outlining the potential benefits of decreasing the number of drugs that patients with cancer can take, with emphasis on the need for thoughtful discontinuation initiatives in the context of life-limiting malignant disease. In view of the apparent burden of polypharmacy in patients with advanced cancer, we expect that greater attention to polypharmacy could lead to improvements in adverse drug events, cost, and possibly quality of life. However, few data for specific interventions in the advanced cancer population are available, and thus more research is warranted., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

While it is commonly stated that for most people the preferred place of death is their own homes, the actual reality is that most people will die in hospitals. This is both by choice and necessity. However, for many, the care that they receive would not necessarily align with their expectations. The need to improve the quality of health care at the end of life has been acknowledged by the Australian Commission for Safety and Quality in Healthcare with the release of a recent discussion paper. It is presumed this is a prelude to the release of another quality standard specifically for end of life care. The aim of this paper is to question whether such a standard is likely to result in the hoped for improvements in care.

Context: In end-of-life care, delirium is often not recognized and poses unique management challenges, especially in the case of refractory delirium in the terminal phase., Objectives: To review delirium in the terminal phase context, specifically in relation to recognition issues; the decision-making processes and management strategies regarding its reversibility; the potential refractoriness of delirium to symptomatic treatment; and the role of sedation in refractory delirium., Methods: We combined multidisciplinary input from delirium researchers and knowledge users at an international delirium study planning meeting and relevant electronic database literature searches (Ovid Medline, Embase, PsycINFO, and CINAHL) to inform this narrative review., Results: The overall management strategy for delirium at the end of life is directed by the patient's prognosis in association with the patient's goals of care. As symptoms of delirium are often refractory in the terminal phase, especially in the case of agitated delirium, the judicious use of palliative sedation is frequently required. However, there remains a lack of high-level evidence for the management of delirium in the terminal phase, including the role of antipsychotics and optimal sedation strategies. For the family and health-care staff, clear communication, education, and emotional support are vital components to assist with decision making and direct the treatment care plan., Conclusion: Further research on the effectiveness of delirium management strategies in the terminal phase for patients and their families is required. Further validation of assessment tools for diagnostic screening and severity measurement is needed in this patient population., (Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Palliative care in the U.S. has evolved from a system primarily reliant on community-based hospices to a combined model that includes inpatient services at most large hospitals. However, these two dominant approaches leave most patients needing palliative care-those at home (including nursing homes) but not yet ready for hospice-unable to access the positive impacts of the palliative care approach. We propose a community-based palliative care (CPC) model that spans the array of inpatient and outpatient settings in which palliative care is provided and links seamlessly to inpatient care; likewise, it would span the full trajectory of advanced illness rather than focusing on the period just before death. Examples of CPC programs are developing organically across the U.S. As our understanding of CPC expands, standardization is needed to ensure replicability, consistency, and the ability to relate intervention models to outcomes. A growing body of literature examining outpatient palliative care supports the role of CPC in improving outcomes, including reduction in symptom burden, improved quality of life, increased survival, better satisfaction with care, and reduced health care resource utilization. Furthermore the examination of how to operationalize CPC is needed before widespread implementation can be realized. This article describes the key characteristics of CPC, highlighting its role in longitudinal care across patient transitions. Distinguishing features include consistent care across the disease trajectory independent of diagnosis and prognosis; inclusion of inpatient, outpatient, long-term care, and at-home care delivery; collaboration with other medical disciplines, nursing, and allied health; and full integration into the health care system (rather than parallel delivery)., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Context: Evidence-based approaches are needed to improve the delivery of specialized palliative care., Objectives: The aim of this trial was to improve on current models of service provision., Methods: This 2×2×2 factorial cluster randomized controlled trial was conducted at an Australian community-based palliative care service, allowing three simultaneous comparative effectiveness studies. Participating patients were newly referred adults, experiencing pain, and who were expected to live >48 hours. Patients enrolled with their general practitioners (GPs) and were randomized three times: 1) individualized interdisciplinary case conference including their GP vs. control, 2) educational outreach visiting for GPs about pain management vs. control, and 3) structured educational visiting for patients/caregivers about pain management vs. control. The control condition was current palliative care. Outcomes included Australia-modified Karnofsky Performance Status (AKPS) and pain from 60 days after randomization and hospitalizations., Results: There were 461 participants: mean age 71 years, 50% male, 91% with cancer, median survival 179 days, and median baseline AKPS 60. Only 47% of individuals randomized to the case conferencing intervention received it; based on a priori-defined analyses, 32% of participants were included in final analyses. Case conferencing reduced hospitalizations by 26% (least squares means hospitalizations per patient: case conference 1.26 [SE 0.10] vs. control 1.70 [SE 0.13], P=0.0069) and better maintained performance status (AKPS case conferences 57.3 [SE 1.5] vs. control 51.7 [SE 2.3], P=0.0368). Among patients with declining function (AKPS <70), case conferencing and patient/caregiver education better maintained performance status (AKPS case conferences 55.0 [SE 2.1] vs. control 46.5 [SE 2.9], P=0.0143; patient/caregiver education 54.7 [SE 2.8] vs. control 46.8 [SE 2.1], P=0.0206). Pain was unchanged. GP education did not change outcomes., Conclusion: A single case conference added to current specialized community-based palliative care reduced hospitalizations and better maintained performance status. Comparatively, patient/caregiver education was less effective; GP education was not effective., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Context: Although research activity in palliative care is rapidly increasing, the composition of published studies--in terms of significant research characteristics--has not yet been well described., Objectives: To describe the topics of and funding for palliative care studies reported in the three hospice and palliative care journals with the highest impact factors (Journal of Pain and Symptom Management, Palliative Medicine, and Journal of Palliative Medicine)., Methods: This was a substudy of a larger bibliographic study. The targeted journals were searched for 2007 using a previously validated Ovid MEDLINE filter for palliative care. All empirical palliative care studies were included. Articles were classified according to topics (palliative care patient, caregiver/family, health professional, service provision, tool development, healthy volunteer, medication compatibility, community), study type (intervention, nonintervention), country of origin, and funding source (pharmaceutical company, other funder, unfunded)., Results: Of 409 citations identified, the search yielded 189 eligible articles. Most articles were descriptive/observational. Approximately half were unfunded. Caregivers, healthy volunteers, and health service research were the least frequent topics for research. Only five randomized controlled trials were reported., Conclusion: Although there is a broad range of research undertaken in palliative care, few studies generate high-level evidence, with data showing a relative lack of funding for hospice and palliative care studies., (Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: End-stage lung disease (ESLD) is a frequent cause of death. What are the differences in the supports needed by caregivers of individuals with ESLD at end of life versus other life-limiting diagnoses?, Methods: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey. In 2002, 2003 and 2005-2007, respondents were asked a range of questions about end-of-life care; there were approximately 3000 survey participants annually (participation rate 77.9%). Responses were standardised for the whole population. The families and friends who cared for someone with ESLD were the focus of this analysis. In addition to describing caring, respondents reported additional support that would have been helpful., Results: Of 1504 deaths reported, 145 (9.6%) were due to ESLD. The ESLD cohort were older than those with other 'expected' causes of death (> 65 years of age; 92.6% versus 70.6%; p < 0.0001) and were less likely to access specialised palliative care services (38.4% versus 61.9%; p < 0.0001). For those with ESLD, the mean caring period was significantly longer at 25 months (standard deviation (SD) 24) than for 'other diagnoses' (15 months; SD 18; p < 0.0001). Domains where additional support would have been useful included physical care, information provision, and emotional and spiritual support., Conclusions: Caregiver needs were similar regardless of the underlying diagnosis although access to palliative care specialist services occurred less often for ESLD patients. This was despite significantly longer periods of time for which care was provided.

Objective: Australians are more likely to die in a hospital than anywhere else, and most of these deaths are 'expected'. The aims of this survey were to identify if specific end-of-life issues were documented in clinical records of a regional hospital serving remote Australia., Design: A retrospective consecutive case-note audit covering 18 months from 1 January 2006., Setting: Alice Springs Hospital., Participants: Adult deaths in Alice Springs Hospital. During this period there were 128 deaths., Outcome Measures: Demographic, process (diagnosis of dying documented, 'not for resuscitation' documentation, intensive care unit (ICU) admission, social worker referral and specialised palliative care service referral) and outcome data ('comfort at end of life') were surveyed., Results: Of the 128 admissions, 55 cases were excluded: 10 were children under 18, 33 died in < 48 hours, nine were coroner's cases and three files could no't be found. Of the 73 deaths surveyed (33 men), 47 (64%) were Aboriginal. A diagnosis of dying was made in 84%, 88% had an 'not for resuscitation' order, 48% were admitted to ICU during their last admission, 66% were referred to social workers, 68% were referred to palliative care and 85% of people were documented to be 'comfortable' during the dying process with no differential outcomes for Aboriginal and non-Aboriginal decedents except age (P < 0.0001)., Conclusion:   This survey highlights the continuing need to diagnose dying, understand optimal use of intensive care and improve comfort care at the end of life., (© 2011 The Authors. Australian Journal of Rural Health © National Rural Health Alliance Inc.)

Purpose: To examine the role of friends as caregivers of people with terminal illness., Method: Piloted questions were included in the 2001-2007 random face-to-face annual health surveys of 23588 South Australians on the death of a loved one, caregiving provided, and characteristics of the caregiver and deceased individual. The survey was representative of the population by age, gender, and region of residence. Analyses focused on friends of the deceased loved one, providing daily or intermittent 'hands on' care. Logistic regression assessed predictors of home death., Results: Daily 'hands on' carers were much more likely to be female and aged between 55 and 64; there was also a younger (12 months. Home deaths were more frequent (32%, p=0.014) when friends were carers, and the rate of palliative care use was higher than when family/others provided care (70 vs 61%). Regression analyses confirmed friends as caregivers as a predictor of home death (OR 1.73: 95%, CI 1.15-2.87)., Conclusion: Friends contribute their caregiving: A cohort of younger caregivers may reflect changing social mores as the extended family shrinks and people turn to friendship networks for care and support at the end of life., (Copyright © 2010 John Wiley & Sons, Ltd.)

Context: Breathlessness reportedly worsens as death approaches for many people, but the differences in intensity and time course between underlying causes are not well described., Objectives: To determine differences in the intensity of breathlessness by diagnosis over time as death approaches in a consecutive cohort seen by a specialist palliative care service., Methods: Patients referred to Silver Chain Hospice Care Service over a period of four years (January 2004 to December 2007) had dyspnea evaluated at every clinical encounter until death. A numeric rating scale (NRS) was used to measure the intensity. Patients were categorized into five clusters (lung cancer, secondary cancer to lung, heart failure, end-stage pulmonary disease, and no identifiable cardiorespiratory cause) at three time points (60-53 [T(3)], 30-23 [T(2)], and 7-0 [T(1)] days before death [T(0)]). Group differences were assessed using analysis of variance. Joinpoint regression models defined significant changes in mean breathlessness intensity., Results: For 5,862 patients, data were collected an average of 20 times (median: 13; 116,982 data points) for an average of 86 days (median: 48). Breathlessness was significantly higher at all three time points in people with noncancer diagnoses. Breathlessness increased significantly at days 10 and 3 before death for people with cancer (P<0.001 for both), but remained unchanged, albeit significantly higher for patients with noncancer diagnoses. In the three months leading to death, the prevalence of "no breathlessness" decreased from 50% to 35%, and the proportion of patients with severe breathlessness (>7 out of 10) increased from 10% to 26%., Conclusion: Prevalence of breathlessness increases rapidly at life's end, especially for people with primary lung cancer; the levels of breathlessness became close to those experienced by people with noncancer diagnoses despite symptom control measures., (Copyright (c) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Introduction: Oxygen for refractory dyspnea at the end of life is commonly prescribed, even when the criteria for long-term home oxygen therapy are not met. Is palliative oxygen less likely to be prescribed when a person lives alone at the end of life?, Methods: Three years of consecutively collected clinical data from a regional community palliative care program in Western Australia were used in univariate analyses utilizing chi(2) and analysis of variance, as appropriate. Multivariable logistic regression was used to identify characteristics of people for who oxygen has been prescribed., Results: Of the study population (n = 5203), 9.8% (n = 507) did not have a caregiver. Oxygen was less likely to be prescribed for patients living alone (11.8% versus caregiver 20.6%; p < 0.001), those with cancer (18.8% versus noncancer 26.5%; p < 0.001), and older people (oxygen 68.1 years versus no oxygen 69.6 years; p = 0.005), and more likely to be prescribed for those with worse dyspnea (mean score 7/10, oxygen 7.6 versus no oxygen 4.2; p < 0.001). With severe dyspnea (= 7/10), people who lived alone had twice as many clinician visits before oxygen was prescribed (4.2 versus caregiver 1.7; p = 0.03). In multifactor analyses lung disease, dyspnea severity, and female gender predicted oxygen prescription, while not having a caregiver reduced the likelihood significantly (odds ration [OR] 0.51, 95% confidence interval [CI] 0.35-0.74; p < 0.001)., Discussion: Presence of a caregiver in the home is associated with palliative oxygen prescription having controlled for time in hospital. This study raises questions about the reasons for oxygen prescription, and the role caregivers may play in initiating requests for therapy.

Background: In palliative care, the target population (all people with life-limiting illnesses and their family/caregivers) and the complexity of their needs from diagnosis to bereavement should define the subpopulation who access specialist palliative care services (SPCS). Have caregivers of patients who have not accessed SPCS had their needs met?, Methods: As part of a broader state-wide randomized face-to-face population health survey over six years (18,224 interviews, 71% response), questions were asked of people bereaved in the previous five years when someone close to them died an ;expected' death (39% of respondents). Questions included respondent demographics, the diagnosis of the deceased and, for one year, whether SPCS was of benefit (if used) or needed (if not used). Differential uptake rates were calculated for diagnosis, income, country of birth and age and 2 x 2 tables reflecting the accuracy of match of service with caregiver needs were generated for each group (accuracy = true positives + true negatives/total) *100., Results: Uptake of SPCS was significantly lower in people with a non-cancer diagnosis (40% versus 62%; P = 0.0001), lower income (56% versus 61%; P = 0.0006) and people born where English was not the first language (52% versus 58%; P = 0.0096). The only subgroup where the accuracy of matching between palliative care service uptake and identified needs was lower than the overall average (83%) was where cancer was not the life-limiting illness (69%; cancer 86%)., Discussion: SPCS under utilization has previously been described in the population subgroups explored in this study and assumed to equal unmet needs and poorer outcomes. Caregiver responses suggest that, except for people with a non-cancer diagnosis, lack of service uptake may not represent unmet needs. These results are limited to people with caregivers.

Introduction: End-stage lung disease (ESLD) (predominantly caused by chronic obstructive pulmonary disease and restrictive lung disease) is a significant cause of death. Little is known about community care for people with ESLD especially in the period leading to death. This paper describes demographic characteristics of caregivers, and key characteristics of the deceased irrespective of specialist service utilization., Methods: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey conducted statewide. For the last eight years questions about end of life have been asked of 3000 respondents annually (participation rate 77.9%). Directly standardized to the whole population, this study describes people who cared for someone with ESLD until death., Results: One third (6370/18267) had someone die in the last five years from a terminal illness, 644 from ESLD (3.5% of respondents; 10.2% of deaths). One in five (20.8%) provided physical care: 43 respondents provided day-to-day and 63 provided intermittent hands-on care for an average of 40.1 months (SD 56.9). Caregivers were on average 51.2 years old (range 17-85; SD 16.5) and one in five was a spouse. Additional support to provide physical care was an unmet need by 17% of caregivers. The deceased were an average of 73.9 years old (range 47-92; SD 10.4). Only 31.1% were assessed as 'comfortable' or 'very comfortable' in the last fortnight of life., Discussion: Given the health consequences of caregiving, caregivers of people with ESLD would benefit from prospectively defining their needs given the time for which intense caregiving is provided.

Purpose: To determine whether provision of a question prompt list (QPL) influences advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a palliative care (PC) physician., Patients and Methods: This randomized controlled trial included patients randomly assigned to standard consultation or provision of QPL before consultation, with endorsement of the QPL by the physician during the consultation. Consecutive eligible patients with advanced cancer referred to 15 PC physicians from nine Australian PC services were invited to participate. Consultations were audiotaped, transcribed, and analyzed by blinded coders; patients completed questionnaires before, within 24 hours, and 3 weeks after the consultation., Results: A total of 174 patients participated (92 QPL, 82 control). Compared with controls, QPL patients and caregivers asked twice as many questions (for patients, ratio, 2.3; 95% CI, 1.7 to 3.2; P < .0001), and patients discussed 23% more issues covered by the QPL (95% CI, 11% to 37%; P < .0001). QPL patients asked more prognostic questions (ratio, 2.3; 95% CI, 1.3 to 4.0; P = .004) and discussed more prognostic (ratio, 1.43; 95% CI, 1.1 to 1.8, P = .003) and end-of-life issues (30% v 10%; P = .001). Fewer QPL patients had unmet information needs about the future (21 = 4.14; P = .04), which was the area of greatest unmet information need. QPL consultations (average, 38 minutes) were longer (P = .002) than controls (average, 31 minutes). No differences between groups were observed in anxiety or patient/physician satisfaction., Conclusion: Providing a QPL and physician endorsement of its use assists terminally ill cancer patients and their caregivers to ask questions and promotes discussion about prognosis and end-of-life issues, without creating patient anxiety or impairing satisfaction.

Background: People with a life limiting illness may have unpredictable exacerbations of their symptoms requiring after hours care by general practitioners using medications that are readily accessible. All doctors are provided with injectable 'doctor's bag' emergency drugs for use in such a crisis., Objective: This article aims to: identify which medications from the doctor's bag can be used in the palliative care crises that are most frequently encountered, present the best possible evidence for these indications, and to provide GPs caring for palliative care patients after hours with management strategies so, whenever appropriate, they can continue to be managed at home., Discussion: The clinical context, including disease trajectory and patient and caregivers' wishes, must be assessed in palliative care crises. Having excluded reversible problems, symptoms can be treated using doctor's bag medications. Attention must be given to route of administration, duration of effect, and appropriate doses for effective palliation.

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.