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Background: Hospitalisation rates for older people are increasing, with end-of-life care becoming a more medicalised experience. Innovative approaches are warranted to support early identification of the end-of-life phase, communicate prognosis, provide care consistent with people's preferences, and improve the use of healthcare resources. The Intervention for Appropriate Care and Treatment (InterACT) trial aimed to increase appropriate care and treatment decisions for older people at the end of life, through implementation of a prospective feedback loop. This paper reports on the care review outcomes.Methods: A stepped-wedge randomised controlled trial was conducted in three large acute hospitals in Queensland, Australia between May 2020 and June 2021. The trial identified older people nearing the end of life using two validated tools for detecting deterioration and short-term death. Admitting clinical teams were provided with details of patients identified as at-risk with the goal of increasing awareness that end of life was approaching to facilitate appropriate patient centred care and avoid non-beneficial treatment. We examined the time between when the patient was identified as 'at-risk' and three outcomes: clinician-led care review discussions, review of care directive measures and palliative care referrals. These were considered useful indicators of appropriate care at the end of life.Results: In two hospitals there was a reduction in the review of care directive measures during the intervention compared with usual care at 21 days (reduced probability of - 0.08; 95% CI: - 0.12 to - 0.04 and - 0.14; 95% CI: - 0.21 to - 0.06). In one hospital there was a large reduction in clinician-led care review discussions at 21 days during the intervention (reduced probability of - 0.20; 95% CI: - 0.28 to - 0.13). There was little change in palliative care referrals in any hospital, with average probability differences at 21 days of - 0.01, 0.02 and 0.04.Discussion: The results are disappointing as an intervention designed to improve care of hospitalised older people appeared to have the opposite effect on care review outcomes. The reasons for this may be a combination of the intervention design and health system challenges due to the pandemic that highlight the complexity of providing more appropriate care at the end of life.Trial Registration: Australia New Zealand Clinical Trial Registry, ACTRN12619000675123 (registered 6 May 2019). [ABSTRACT FROM AUTHOR]

Background/aim The role played by Australian occupational therapists with clients living with terminal illness has recently been highlighted in the Occupational Therapy Australia () position paper on palliative care. To date, little evidence exists about the work profile of these therapists, the type of clients seen, their practice settings and how long therapists are planning to remain in this clinical role. This paper presents results from a national survey of Australian occupational therapists working with people who are terminally ill. Methods The largest ever sample ( n = 171) of Australian occupational therapists working with clients who are terminally ill were purposively surveyed in this national mixed-method study, which was analysed using descriptive statistics and grounded theory. Results Results revealed a predominantly full-time, publicly employed (81%), female (93%) workforce, with an average six years of experience in this setting. Most therapists treated clients in the community (49%), with slightly fewer working in inpatient settings (40%). Many had dual caseloads, employed in palliative care clinical roles, aged care or oncology settings. Neoplasms of varying kinds represented the dominant clinical diagnostic category. The majority of respondents planned to remain in their current role on average seven more years, citing job satisfaction as the main reason for doing so. Conclusions Results from this study reveal important data for future workforce planning in this clinical area. The information gathered about client diagnoses and practice contexts will enable more targeted preparation of students for graduation. [ABSTRACT FROM AUTHOR]

Background: The development of the evidence-base informing end of life (EoL) care is hampered by the assumption that patients at the EoL are too vulnerable to participate in research. This study aims to systematically and critically review the evidence regarding the experiences and views of patients, caregivers, professionals and researchers about participation in EoL care research, and to identify best practices in research participation. Methods: We searched seven electronic databases, and hand searched three journals and the bibliographies of relevant papers. Inclusion criteria were original research papers on involvement in EoL care research or its impact on participants. Critical interpretive synthesis was used to integrate the whole body of empirical evidence on this topic and generate theoretical categories from the evidence. Results: Of a total of 239 identified studies, 20 studies met the inclusion criteria, from: the US (11), the UK (6) and Australia (3). Most focused on patients with cancer (12) and were conducted in hospices (9) or hospitals (7). Studies enquired about issues related to: EoL care research in general (5), specific research methods (13), and trial research (2). The studies evaluating willingness to participate in EoL care research showed positive outcomes across the different parties involved in research. Factors influencing willingness were mainly physical and cognitive impairment. Participating in research was a positive experience for most patients and carers but a minority experienced distress. This was related to: characteristics of the participants; the type of research; or the way it was conducted. Participatory study designs were found particularly suitable for enabling the inclusion of a wide range of participants. Conclusion: The evidence explored within this study demonstrates that the ethical concerns regarding patient participation in EoL care research are often unjustified. However, research studies in EoL care require careful design and execution that incorporates sensitivity to participants' needs and concerns to enable their participation. An innovative conceptual model for research participation relevant for potentially vulnerable people was developed. [ABSTRACT FROM AUTHOR]

Our choice for care at the end of our lives is constrained by many factors, including the options available to us, our capacity to choose and the social structures that constrain our options and therefore our choices. Working with the interaction between personal agency and social constraints is a core public health activity. An intentional public health approach to palliative and end-of-life care can elucidate the direct relationship between our social circumstances and the quality of our end of life and uncover the implications of structural inequity for end-of-life choice. The approach reorients systems and settings to achieve accessible and equitable palliative and end of-life care for all, and identifies contributions that all jurisdictions, settings, organisations, sectors and communities can make to improving end-of-life care outcomes. Frameworks that support this shift in practice and policy are however in their infancy. Implementation frameworks that can structure and guide 'how' to translate public health palliative care concepts into sustainable practice are needed. This paper reports on an evidence-based Australian public health palliative care framework designed to achieve this. [ABSTRACT FROM AUTHOR]

Background The perceptions of those called on to make decisions on behalf of patients who lack capacity at the end of life must accurately reflect patient preferences. Aims To establish the extent to which the views of medical oncology outpatients are understood by their support persons, specifically with regards to (i) preferred type and location of end-of-life care, (ii) preferred level of involvement in end-of-life decision-making and (iii) whether the patient has completed an advance care plan or appointed an enduring guardian. Methods Adults with a confirmed cancer diagnosis and their nominated support persons were approached between September 2015 and January 2016 in the waiting room of an Australian tertiary referral clinic. Consenting participants completed a pen-and-paper survey. Nominated support persons answered the same questions from the patient's perspective. Results In total, 208 participants (39% of eligible dyads) participated. Observed agreement across the five outcomes ranged from 54% to 84%. Kappa values for concordance between patient-support person responses were fair to moderate (0.24-0.47) for enduring guardian, decision-making, advance care plan and care location outcomes. A slight level of concordance ( k = 0.15; 95% confidence interval: −0.02, 0.32) was found for the type of care outcome. Conclusion Relying on support persons' views does not guarantee that patients' actual preferences will be followed. Strategies that make patient preferences known to healthcare providers and support persons while they still have the capacity to do so is a critical next step in improving quality cancer care. [ABSTRACT FROM AUTHOR]

Aim and objectives: To explore the family's experience being offered memory making during end‐of‐life care in the adult intensive care unit and its use in early bereavement. Background: Family members of individuals who develop a critical illness requiring emergency hospitalisation are unlikely to be prepared for a possible death. This places them at increased risk of poorer bereavement experiences. One potential intervention is memory making, which is an act that provides tangible objects such as a handprint, footprint, lock of hair, or teddy bear, that allows connections with and provides meaningful memories about a person. Families in the adult acute population reportedly have positive reactions regarding the objects, but it is unknown the object's effects on early bereavement experiences. Design: Descriptive qualitative study utilising inductive reflexive thematic analysis. Reporting adheres to the COREQ checklist. Methods: Between May 2019‐December 2020, a purposeful, convenience sample of 21 participants from a tertiary referral, adult intensive care unit in Australia were recruited to explore their experiences being offered memory making during end‐of‐life care and the objects use in early bereavement. Interviews were conducted using a semi‐structured format and occurred at the participants' location of choice. Results: Data analysis generated three themes: guidance during end of life by healthcare professionals that recognises the autonomy of the family; object used as a trigger to access memories; and storage and preservation of the object as an indication of its sentimental value and use in early bereavement Conclusion: Memory making objects such as handprints, locks of hair, or teddy bears received in the adult intensive care unit were valued and utilised during early bereavement by most recipients. Relevance to clinical practice: Findings inform practice evidence gaps regarding the family's experiences of memory making received as a bereavement intervention in the adult acute population. Patient or public contribution: Participants contributed through sharing their first‐hand experiences of receiving memory making in the adult intensive care unit. [ABSTRACT FROM AUTHOR]

Australia's population is culturally and linguistically diverse, with approximately one quarter of the population born overseas (Australian Bureau of Statistics, 2005). Health-care research must be culturally sensitive and due consideration given to the unique ethical, cultural, and other issues that may arise. Issues in palliative care research have become more complex as the options of care at the end of life develop in respect to the requirements of different cultures. This paper highlights the issues that arose when conducting a qualitative study of the needs and experiences of Indian families with a relative requiring palliative care, and also proposes strategies to address the ethical and methodological problems that may arise when researching this vulnerable population. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYAs) with life-threatening illnesses want to voice their end-of-life choices. However, these conversations do not happen often. This is in part because of the discomfort that surrounds talking about these issues and because health professionals often have not had enough training in this area. Voicing My CHOiCES is an American booklet which serves as a communication guide to help AYAs have these important discussions with their families and health professionals and document their preferences for care. Our study looked at whether the American guide was suited to young Australians, and what aspects of the guide young people, health professionals, and parents thought caused stress. Overall, participants thought the guide was appropriate and helpful for adolescents and young adults, and they talked about different sources of stress for AYAs attempting to complete it. Our research will inform the adapted Australian Voicing My CHOiCES and support health professionals in how to use this guide to facilitate positive end-of-life outcomes for young people and their families. Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Procedure: Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness—yes/no, helpfulness and whether content caused stress—1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statistics and to identify prominent themes. Results: In terms of acceptability, almost all participants (96%) rated VMC as appropriate overall. Perceived helpfulness to their situation (to themselves/their child/their patients), to others, and stressfulness were rated, on average, as 4.1, 4.0, and 2.7/5, respectively. Stress was attributed to individual and personal factors, as well as interpersonal worries. All sections were considered more beneficial than burdensome, except for the Spiritual Thoughts section (Section 6). Conclusions: While VMC is an acceptable advance care planning guide for AYAs with cancer, changes to the guide were suggested for the Australian context. Health professionals implementing VMC will need to address and mitigate anticipated sources of stress identified here. Future research evaluating the impact of a new culturally adapted Australian VMC guide is an important next step. Finally, the clinical implications of the present study are suggested. [ABSTRACT FROM AUTHOR]

Background: Lack of access, late engagement and limited referral for palliative care remain critical issues in supporting Indigenous Australians with life limiting illness. Aim: To explore the experiences and perspectives of Indigenous and non-Indigenous health professionals regarding the provision of palliative care for Indigenous people with advanced disease. Design: Qualitative study involving semi-structured focus groups/interviews with analysis following an inductive thematic approach. Setting/participants: A purposive sample (n = 54) of medical, nursing, allied health and Indigenous Hospital Liaison Officers engaged in caring for Indigenous patients at a metropolitan teaching hospital in Australia. Results: Four overarching themes were identified regarding provision of palliative care for Indigenous patients. These were (1) the intersection of cultures – Indigenous peoples, health and palliative care, (2) bridging the cultural divide: the integral role of Indigenous Hospital Liaison Officers, (3) health professionals devolve their responsibility to provide culturally appropriate care and (4) building towards a more holistic, culturally aware provision of palliative care. Conclusions: For many Indigenous people, the health system may be experienced as inflexible, narrowly focused and even prejudiced and traumatising. For Indigenous patients at the end of life, these challenges are heightened. The Indigenous Hospital Liaison Officers, working at the intersections of these two cultures, are key to negotiating such challenges as they seek opportunities to facilitate communication and understanding between firmly held cultural needs. [ABSTRACT FROM AUTHOR]

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In some international settings, social workers are employed within aged care settings. However, in Australia, social workers rarely work in residential aged care facilities. In an innovative program, an Australian health network employed a social worker in an aged residential care facility from 2010 to 2011. In this research we examine and evaluate this program. Qualitative semistructured interviews with nine key stakeholders and data extraction from medical records were conducted. Data from medical records and interview transcripts were coded and themes extracted using thematic analysis. Thematic analysis identified five key themes reflecting the roles performed by the social worker. These were: (1) The importance of having an independent third party, (2) The provision of emotional support to residents, carers and families during the transition period, (3) The importance of role clarity, (4) The provision of family-centered care, and (5) Social work responses to potential difficulties which were preventative rather than reactive. The move into residential aged care can be an overwhelming, and in some cases, traumatic transition for residents and families. Results identified that timely and expert social work intervention can improve the transition process through the provision of counselling to effectively manage grief, loss, and psychosocial issues. [ABSTRACT FROM AUTHOR]

Abstract: Accompanying patients from active treatment towards specialist palliative care is a complex sphere of clinical practice that can be fraught with interpersonal and emotional challenges. While medical specialists are expected to break ‘bad news’ to their patients and ease their transitions to specialist palliative care if required, few have received formal training in such interpersonal complexities. Furthermore, there also often exists clinical ambiguity around whether to continue active treatment vis-à-vis refocusing on quality of life and palliation. In this paper we explore the experiences of twenty Australian medical specialists, focussing on issues such as: dilemmas around when and how to talk about dying and palliation; the art of referral and practices of representation; and, accounts of emotion and subjective influences on referral. The results illustrate how this transitional realm can be embedded in emotions, relationships and the allure of potentially life-prolonging intervention. We argue that the practice of referral should be understood as a relational and contextually-bound process. [Copyright &y& Elsevier]

This paper examines the interrelationship between suicide, health, socioeconomic, and psychosocial factors in contributing to suicide in older adults in rural Australia. Drawing on a coronial dataset of suicide cases and a mixed methods sociological autopsy approach, our study integrated a quantitative analysis of 792 suicide cases with a qualitative analysis of medico-legal reports from 30 cases. The sociological autopsy provided novel insights into the entanglement of policy and service provision at the state-level with individual end-of-life decisions. Particular attention is drawn to age and gendered dimensions of suicide, especially in relation to health and social issues. The study showed a continuity between suicide and the patterning of an individual's life course, including experiences and consequences of inequality and marginality; a desire to meet culturally–normative ideals of autonomy; and a fragmented, under-funded, and intimidating social care system that offered limited options. • Sociological autopsy applied to unique coronial dataset of older adult suicide. • Combines quantitative and qualitative analyses of data from medico-legal reports. • Age and gendered differences in health and social issues related to suicide. • State-level policies and practices intersect with individual end-of-life decisions. • Imperative of prevention creates harmful environments and consequences. [ABSTRACT FROM AUTHOR]

A core consideration in the care of Indigenous patients at the end of life is their place of death. Dying in community can be of paramount importance to Indigenous people. This paper reports the experiences of the Top End Palliative Care Service with respect to the barriers and solutions in the return of Indigenous patients to community for end-of-life care. These barriers include not only those associated with the significant distances and remoteness in the Northern Territory but, also, spiritual and cultural factors, which often influence healthcare delivery. [ABSTRACT FROM AUTHOR]

Strengthening advance care planning in residential aged care is now a priority. This hybrid implementation-effectiveness study aimed to implement and evaluate the effectiveness of multidisciplinary educational case conferences (MuDECC) in end-of-life planning in two Australian rural residential aged care facilities. MuDECCs are hour long meetings with the resident (where appropriate), their family/guardian and a multidisciplinary team of healthcare providers (including community pharmacists) to discuss and plan for the resident's future end-of-life care needs. Between November 2018 and July 2019 ten MuDECCs were convened. The implementation was evaluated using a utilisation-focused approach. Intervention outcomes were documented advance care plans, availability of anticipatory end-of-life medications, and participant satisfaction. Of 23 persons who died during the study period, 65% had a documented end-of-life care plan; 57% had anticipatory medications charted. MuDECCs were reported to be acceptable, effective, and a valuable learning experience. By providing a framework for informed decision making and joint problem sharing, MuDECCs were effective in facilitating advance care planning and prescribing of anticipatory medications. However, MuDECCs were time consuming to organise with disproportionate responsibilities or time commitments borne by several key individuals. The necessary personal and professional capital to implement MuDECCs may be limited or unavailable in some rural locations. [ABSTRACT FROM AUTHOR]

Objective: The role of the psychologist within End of Life (EOL) care is poorly established, despite calls for greater involvement from both Australian and international researchers. The current study aims to develop a deeper understanding of Australian psychologists' perceptions on their current and potential roles in EOL care. Methods: Semi‐structured interviews were conducted with registered psychologists (N = 35), and thematic analysis was applied to these interviews to identify themes and subthemes pertaining to psychologists' understandings of their role in EOL care. Results: Six overarching themes were developed from the interview data: (a) Specific EOL Clients Assessment Skills; (b) Diverse and Multifaceted Interventions with Clients; (c) Skills Used in the Broader EOL system; (d) Barriers to Greater Visibility from Outside the Profession; (e) Barriers within the Profession; (f) Pathways to Greater Visibility. Conclusion: The potential exists for psychologists to improve psycho‐social‐spiritual‐community outcomes at EOL and to meet the increasing demands of an ageing demographic with greater associated caregiver burden. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study is to map the existent research undertaken in Australia into broad thematic areas and identify the characteristics of the studies and areas of future research in the literature.Methods: A scoping review methodology was employed to map the current areas of research undertaken in Australia since January 2000 until the end of December 2018 according to years of publications, types of studies, populations studied, research themes, and areas of focus.Results: Our review identified 1,405 Australian palliative care research publications between January 2000 and December 2018. Nearly 40% of the studies were quantitative (39%) and a third were qualitative studies (31%). The remainder of the studies were reviews, mixed methods, quality improvement projects, and others. One-third (30%) of the research was done with carers' participants followed by nurses (22%) and doctors and physicians (18%). The most frequently reported diagnosis in the studies was cancer with 42% of the publication total. The most frequently explored theme was physical symptoms (such as pain, breathlessness, nausea, delirium, and dyspnea) with a total of 16% of all articles followed by communication (15%). There was a large gap to the next most frequently explored theme with service delivery (9%) and coordination of care (8%). Assessment of patients (7%), end-of-life decision-making (6%), and rural/regional (6%) all produced a similar number of publications. Very few studies addressed topics such as quality of life, E-Health, after-hours care, spirituality, and health economics. Moreover, there were only 15 (1%) studies focused on the last days of life.Significance Of the Results: The current review presented a comprehensive search of the literature across almost two decades in Australia in the palliative care setting. It has covered a breadth of research topics and highlighted urgent areas for further research. [ABSTRACT FROM AUTHOR]

How older people plan ahead for ageing in relation to accommodation, care arrangements, healthcare and medical treatment, and end of life decisions has attracted particular attention in recent years and as a result there has been considerable promotion of the importance of planning ahead and executing planning instruments with the aim of making one's wishes and preferences known in advance. Planning ahead is promoted as allowing older people to have their voices heard, to advance their autonomy, choice and self-determination and to allow them to decide what treatment they may not want to receive. This article provides a critique of advance care planning, based on a subset of findings from a qualitative intergenerational study on ageing in Australia. The findings suggest that advance care planning is a much more complex and at times problematic endeavour, compared to what is promoted about advance care planning, in particular with regard to the use of planning instruments. [ABSTRACT FROM AUTHOR]

Purpose: With an ageing population, speech-language pathologists (SLPs) can expect to encounter legal and ethical challenges associated with palliative and end-of-life care more frequently. An awareness of the medico-legal and ethical framework for palliative dysphagia management will better equip SLPs to work effectively in this area. Method: This narrative review examines a range of legislation, legal, ethical and SLP literature that is currently available to orient SLPs to legal and ethical palliative dysphagia management in the Australian context. Result: Relevant legal and ethical considerations in palliative and end-of-life care are described. Conclusion: SLPs have a role in palliative dysphagia management, however, this can involve unique legal and ethical challenges. The legal position on provision and cessation of nutrition and hydration differs between Australian States and Territories. Decisions by the courts have established a body of relevant case law. This article introduces SLPs to some of the important considerations for legal and ethical palliative care, but is not intended to be directive. SLPs are encouraged to explore their local options for ethical and medico-legal guidance. It is hoped that increasing SLPs awareness of many of the concepts discussed in this article enhances the provision of high-quality patient-centred care. [ABSTRACT FROM AUTHOR]

Background: Population ageing will lead to more deaths with an uncertain trajectory. Identifying patients at risk of dying could facilitate more effective care planning. Aim: To determine whether screening for likely death within 12 months is more effective using screening tools or intuition. Design: Randomised controlled trial of screening tools (Surprise Question plus the Supportive and Palliative Care Indicators Tool for Surprise Question positive patients) to predict those at risk of death at 12 months compared with unguided intuition (clinical trials registry: ACTRN12613000266763). Setting/participants: Australian general practice. A total of 30 general practitioners (screening tool = 12, intuition = 18) screened all patients (n = 4365) aged ≥70 years seen at least once in the last 2 years. Results: There were 142 deaths (screening tool = 3.1%, intuition = 3.3%; p = 0.79). General practitioners identified more at risk of dying using Surprise Question (11.8%) than intuition (5.4%; p = 0.01), but no difference with Surprise Question positive then Supportive and Palliative Care Indicators Tool (5.1%; p = 0.87). Surprise Question positive predicted more deaths (53.2%, intuition = 33.7%; p = 0.001), but Surprise Question positive/Supportive and Palliative Care Indicators Tool predictions were similar (5.1%; p = 0.87 vs intuition). There was no difference in proportions correctly predicted to die (Surprise Question = 1.6%, intuition = 1.1%; p = 0.156 and Surprise Question positive/Supportive and Palliative Care Indicators Tool = 1.1%; p = 0.86 vs intuition). Screening tool had higher sensitivity and lower specificity than intuition, but no difference in positive or negative predictive value. Conclusion: Screening tool was better at predicting actual death than intuition, but with a higher false positive rate. Both were similarly effective at screening the whole cohort for death. Screening for possible death is not the best option for initiating end-of-life planning: recognising increased burden of illness might be a better trigger. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is a process of planning for future health and personal care. A person's values and preferences are made known so that they can guide decision making at a future time when that person cannot make or communicate his or her decisions. This is particularly relevant for people with dementia because their ability to make decisions progressively deteriorates over time. This study aims to evaluate the cost-effectiveness of delivering a nationwide ACP program within the Australian primary care setting.Methods: A decision analytic model was developed to identify the costs and outcomes of an ACP program for people aged 65+ years who were at risk of developing dementia. Inputs for the model was sourced and estimated from the literature. The reliability of the results was thoroughly tested in sensitivity analyses.Results: The results showed that, compared to usual care, a nationwide ACP program for people aged 65+ years who were at risk of dementia would be cost-effective. However, the results only hold if ACP completion is higher than 50% and adherence to ACP wishes is above 75%.Conclusions: A nationwide ACP program in the primary care setting is a cost-effective or cost-saving intervention compared to usual care in a population at-risk of developing dementia. Cost savings are generated from providing treatment and care that is consistent with patient preferences, resulting in fewer hospitalisations and less-intensive care at end-of-life. [ABSTRACT FROM AUTHOR]

Background Increasing life expectancy for people with intellectual disability is resulting in greater need for end-of-life care services. However, limited knowledge is available regarding what barriers to accessing end-of-life care support are evident, particularly comparatively across rural and metropolitan locations. Methods Focus group interviews were undertaken with 35 direct-care staff from four rural and two metropolitan locations. A semistructured interview guide was used, with a focus on health service access. All focus group data were independently transcribed, with thematic analysis then performed. Results Frequency analysis identified 262 statements relating to health services access. Thematic analysis identified four key areas of 'isolation,' 'support from doctors,' 'general health support access' and 'internal staffing issues.' Conclusions Improved access to end-of-life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers. [ABSTRACT FROM AUTHOR]

Background: Hospitalisations are the prime contributor to healthcare expenditure, with older adults often identified as high hospital users. Despite the apparent high use of hospitals at the end of life, limited evidence currently exists regarding reasons for hospitalisation. Understanding complex end of life care needs is required for future health care planning as the global population ages. This study aimed to investigate patterns of hospitalisation in the last year of life by cause of death (COD) as well as reasons for admission and short-term predictors of hospital use.Methods: Survey data from 1,205 decedents from the 1921-1926 cohort of the Australian Longitudinal Study on Women's Health were matched with the state-based hospital records and the National Death Index. Hospital patterns based on COD were graphically summarised and multivariate logistic regression models examined the impact of short-term predictors of length of stay (LOS).Results: 85 % of women had at least one admission in the last year of life; and 8 % had their first observed admission during this time. Reasons for hospitalisation, timing of admissions and LOS differed by COD. Women who died of cancer, diabetes and 'other' causes were admitted earlier than women who died of organ failure, dementia and influenza. Women who died of organ failure overall spent the longest time in hospital, and women with cancer had the highest median LOS. Longer LOS was associated with previous short- and medium-term- hospitalisations and type of hospital separation.Conclusions: Reducing acute care admissions and LOS at the end of life is complex and requires a shift in perceptions and treatment regarding end of life care and chronic disease management. [ABSTRACT FROM AUTHOR]

Background: Total costs associated with care for older people nearing the end of life and the cost variations related with end of life care decisions are not well documented in the literature. Healthcare utilisation and associated health care costs for a group of older Australians who entered Transition Care following an acute hospital admission were calculated. Costs were differentiated according to a number of health care decisions and outcomes including advance directives (ADs).Methods: Study participants were drawn from the Coaching Older Adults and Carers to have their preferences Heard (COACH) trial funded by the Australian National Health and Medical Research Council. Data collected included total health care costs, the type of (and when) ADs were completed and the place of death. Two-step endogenous treatment-regression models were employed to test the relationship between costs and a number of variables including completion of ADs.Results: The trial recruited 230 older adults with mean age 84 years. At the end of the trial, 53 had died and 80 had completed ADs. Total healthcare costs were higher for younger participants and those who had died. No statistically significant association was found between costs and completion of ADs.Conclusion: For our frail study population, the completion of ADs did not have an effect on health care utilisation and costs. Further research is needed to substantiate these findings in larger and more diverse clinical cohorts of older people.Trial Registration: This study was registered on 13/12/2007 with the Australian New Zealand Clinical Trial Registry ( ACTRN12607000638437 ). [ABSTRACT FROM AUTHOR]

Only recently has the potential (unmet) palliative care (PC) workload in the ED been recognised. While confident in PC symptom management, we underestimate the role of a palliative approach in non-cancer diagnoses and seek education in areas such as individual patient care pathways, ethical and legal issues and difficult conversations at the end of life. PC is best introduced early for a range of life-limiting cancer and non-cancer diagnoses. Allowing patients time to tell their story with active listening, acknowledgement of suffering and a compassionate presence leads to treatment 'success' that is not defined by cure. This patient-centred, rather than disease-centred approach, is the essence of PC, and one that is easily incorporated into emergency practice. PC and disease-specific treatments can comfortably coexist, and with meticulous symptom management, may actually prolong life. PC is everyone's business, and emergency medicine needs to be part of it. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to explore what community living staff talked about and did with people with intellectual disability ( ID) to assist them to understand dying and death. Method Guided by grounded theory methodology, focus groups and one-to-one interviews were conducted with 22 staff who had talked about any topic relating to dying and death with their clients. Results There was little evidence that staff talked with, or did things with clients to assist understanding of the end of life, both prior to and after a death. Prior to death staff assisted clients in a limited way to understand about determining wishes in preparation for death, and what dying looks like by observance of its passage. Following a death staff offered limited assistance to clients to understand the immutability of death, and how the dead can be honoured with ritual, and remembered. Conclusions The findings have implications for why people with ID have only partial understanding of the end of life, the staff skills required to support clients' understanding, and when conversations about the end of life should occur. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death. Method Guided by grounded theory methodology, focus groups and individual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre-dated by a period of end-of-life care. Results While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in-practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the 'opportunity' to engage. Four 'opportunities' were identified: 'when family die', 'incidental opportunities', 'when clients live with someone who is dying' and 'when a client is dying'. Despite limited engagement by staff, people with ID are regularly exposed to dying and death. Conclusions People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end-of-life issues as opportunities arise. [ABSTRACT FROM AUTHOR]

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 23 588 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. [ABSTRACT FROM AUTHOR]

The routine implementation of Advance Care Planning ( ACP) is now a prominent feature of policy directed at improving end of life care in Australia. However, while complex ACP interventions may modestly reduce medical care at the end of life and enable more people to die at home or outside of acute hospital settings, existing legal, organisational, cultural and conceptual barriers limit the implementation and utility of ACP. We suggest that meaningful improvements in end of life care will not result from the institutionalisation of ACP but from more significant changes to the design and delivery of care. [ABSTRACT FROM AUTHOR]