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Background: Collaboration between palliative care units (PCUs) and community palliative care (CPC) services is key to providing integrated care across inpatient and outpatient settings, in response to local and global challenges. Aim: To identify the effect of the COVID-19 pandemic and local CPC service changes on admissions, discharges, and patient access to a metropolitan Australian specialist PCU. Methods: A retrospective cohort study of PCU admissions was performed across three six-month periods, in 2017, 2019, and 2021. Patients' demographics and primary diagnoses were assessed for association with CPC service involvement prior to their first PCU admission. Admission characteristics including referral location, indication for admission, length of stay, palliative care phase and place of death were compared between the three time periods. Results: There were 707 admissions during the studied time periods, corresponding to 589 unique patients, of whom 89% had a principle diagnosis of malignancy. Non-cancer and haematology patients were less likely to be linked with a CPC service prior to their first admission. Most admissions (51%) were arranged directly to the PCU from the community. Compared to earlier time periods, during the COVID-19 pandemic, patients had shorter admissions, were more likely to be discharged in the deteriorating or terminal phases, and had four times the odds of dying at home. Conclusion: COVID-19 had significant impacts on the characteristics of PCU admissions, which has ongoing implications for CPC services. Continuous service delivery evaluation and adaptation are required to ensure equitable access to palliative care during periods of change. [ABSTRACT FROM AUTHOR]

Background: Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels. Aim: To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia. Design: Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken. Setting/participants: Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine. Results: Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework. Conclusion: This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice. [ABSTRACT FROM AUTHOR]

Objective: To explore district nurses' experiences in providing terminal care to patients and their families until death in a private home setting. Design, setting and subjects: Qualitative study. Data derived from focus group discussions with primary nurses in The Faroe Islands. Results: Four themes were identified: 'Challenges in providing terminal care', 'The importance of supporting families', 'Collaborative challenges in terminal care' and 'Differences between rural districts and urban districts'. The nurses felt that terminal care could be exhausting, but they also felt the task rewarding. Involving the family was experienced as a prerequisite for making home death possible. Good collaboration with the local GPs was crucial, and support from a palliative care team was experienced as helpful. They pointed out that changes of GP and the limited services from the palliative care team were challenging. Structural and economic conditions differed between urban and rural districts, which meant that the rural districts needed to make private arrangements regarding care during night hours, while the urban districts had care services around the clock. Conclusion: Our findings underline the complexity of terminal care. The nurses felt exhausted yet rewarded from being able to fulfil a patient's wish to die at home. Experience and intuition guided their practice. They emphasised that good collaboration with the GPs, the palliative care team and the families was important. Establishing an outgoing function for the palliative care team to support the nurses and the families would increase the scope for home deaths. Working conditions differed between rural and urban districts. KEY POINTS: District nurses are key providers of care for people dying in a home care setting. Collaboration with family is essential for making home death possible. Taking care of dying patients is experienced as exhausting but also meaningful. There is a need for an outgoing palliative care team to include all patients regardless of disease. [ABSTRACT FROM AUTHOR]

Interest in voluntary assisted death (VAD) has been growing among researchers, policy makers and the public. This study aimed to explore older adults' perspectives on VAD in Australia. Using purposive sampling, 15 adults ≥65 years participated in in-depth semi-structured interviews. Interpretative phenomenological analysis identified four themes: cultural reflections; beliefs and worldviews; health aspects; and fabric of life. Participants expressed a desire to have control over end-of-life options, challenged by religious beliefs. Participants expressed concern that VAD legislation could leave people vulnerable to coercion and saw a need for safeguards. Reasons for and against supporting and utilising VAD were discussed. Physical illness was seen a more compelling reason for VAD than mental ill-health. Finally, connections to life and other were discussed, and being able to do the things one loved were named aspects of what it meant to live a good life. Implications are discussed along with future research directions. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to estimate the proportion of acute care nurses witnessing end‐of‐life dreams and visions or having these reported by a patient or relative, and to canvass their related attitudes and beliefs. Design: A cross‐sectional survey study was conducted from February 2023 to May 2023. Setting/Participants: Participants were medical and surgical nurses from a 200‐bed acute care hospital in metropolitan Australia. Results: Fifty‐seven nurses participated from a workforce of 169 (34% response rate), of whom 35 (61%) reported they had encountered end‐of‐life dreams and visions. The nature of end‐of‐life dreams and visions encountered was similar to those reported in previous studies by patients and clinicians. Nurses generally held positive attitudes towards end‐of‐life dreams and visions but identified an unmet need for education and training on this aspect of end‐of‐life care. Conclusion: Our results suggest that nurses in acute care encounter end‐of‐life dreams and visions in a similar proportion to oncology and long‐term care but lower than in palliative care settings. Education and training regarding end‐of‐life dreams and visions are needed to ensure the provision of comprehensive, patient‐centred end‐of‐life care. Patient or Public Contribution: No patient or public contribution. Impact: Research in sub‐acute and long‐term care settings suggests that end‐of‐life dreams and visions are a common accompaniment to the dying process. No research has yet focused on the acute care setting, despite this being the place of death for the majority of people in most high‐income countries. This study demonstrates that acute care nurses encounter end‐of‐life dreams and visions in similar proportions to oncology and long‐term care nurses but lower than palliative care nurses. Acute care nurses would benefit from education and training regarding end‐of‐life dreams and visions to enable the provision of holistic person‐centred end‐of‐life care. Reporting Method: This study was reported using the STROBE Checklist for cross‐sectional studies. [ABSTRACT FROM AUTHOR]

Introduction: The compassionate communities' movement is a public health approach to end‐of‐life care that emphasises the integral role of communities in supporting and caring for dying persons and their informal carers. Although occupational therapists have well‐established roles in palliative care teams, little is known about their potential in assisting in the formation and maintenance of compassionate communities. Method: Data were gathered via semi‐structured interviews with nine Australian occupational therapists with experience in specialist palliative care. Interview questions were based around the British Columbia Compassionate Community Ideal framework. Key themes were derived through qualitative descriptive analysis, blending deductive, and inductive reasoning. Findings: Interviewees indicated that occupational therapists have a role in supporting compassionate communities that centres on the facilitation of networks and connections between palliative care professionals and in the promotion of informal care networks. The importance of education and awareness raising were also discussed as valuable to the development of community capacity. It was also suggested that occupational therapists have important skills to support dying persons and their caregivers to remain engaged and safe in their homes and communities, in a meaningful and sustainable way. However, many interviewees maintained a profession‐centric view on control within compassionate communities, as opposed to approaches that are community led. Conclusion: Findings offer early insights into the promise and potential of occupational therapists in supporting the compassionate communities' movement. However, education regarding the ethos of the compassionate communities' movement so as to facilitate a shift away from professionally oriented modes of practice may be needed to maximise success. [ABSTRACT FROM AUTHOR]

Prior to its introduction in Australia, many people opposed euthanasia—or voluntary assisted dying as it is known—because of its potentially detrimental impact on grief and bereavement outcomes for family members and carers. We examine the novel experiences of grief and bereavement of VAD for family members and carers who were going through, had gone through, or were contemplating VAD, juxtaposing the international literature on grief and bereavement. As such, 42 semistructured interviews with family members and carers were undertaken in the state of Victoria, which was the first jurisdiction to legislate in favour of VAD. Interviews explored many themes around end‐of‐life decision‐making in order to ascertain the ways in which VAD helped or hindered grief and bereavement processes. A thematic analysis of the interview data was undertaken using QSR NVivo software. Four key themes were identified: values and meaning‐making, expression of a continuing bond, anticipatory grief, and the burden of care associated with supporting loved ones going through VAD. These themes were juxtaposed with the key literature on grief and bereavement to demonstrate how VAD presents novel challenges for carers. We argue that while VAD deaths share similar characteristics to other deaths; in some respects, grief and bereavement outcomes for family members and carers are unique. For family members and carers helping a loved one go through VAD, they were able to derive a sense of meaning from fulfilling their wishes and striving for them to have a "good death"; they were able to maintain a bond with them through advocacy of VAD and unique rituals; and they were able to plan and prepare effectively by knowing the exact time of death. Family members and carers also noted that VAD presents some significant challenges for grief and bereavement, especially in terms of the impact of VAD on familial relationships and burdens associated with moral predicaments. Nonetheless, VAD was generally viewed positively by family members and carers, who expressed gratitude for mitigating their loved one's suffering. [ABSTRACT FROM AUTHOR]

Background: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care. Aim: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death. Design: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient's final phase of life, taking into account variation across age, gender, diagnosis and location of death. Setting/participants: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022. Results: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days. Conclusion: This study provides valuable new knowledge to support clinicians' confidence when responding to the 'how long' question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering 'how long' questions across the illness trajectory. [ABSTRACT FROM AUTHOR]

The article focuses on the complexities of managing death and dying in emergency departments (EDs), highlighting changes in societal attitudes towards death, challenges faced by ED clinicians, and the spectrum of death and dying experiences in EDs. Topics include the transition of death from home to healthcare facilities, the impact of medical advancements on end-of-life care, and the challenges and learning opportunities associated with unexpected deaths in EDs.

Objective: An advance care directive is a legal document outlining the wishes made by a person about treatment options. However, there is increasing evidence that an advance care directive that has previously been documented may not always benefit the current prognosis of the patient. Therefore, the aim of the present study was to explore the experiences of Australian emergency doctors and nurses concerning the use of previously documented advance care directives at the point of care for patients and their families. Methods: A qualitative study guided by a phenomenological interpretive approach was employed. Semi‐structured interviews were conducted with ED doctors and nurses across Australia. Data were thematically analysed using a seven‐stage data analysis framework. Results: An analysis of the interview data resulted in four major themes: (i) Benefits of Advance Care Directives; (ii) Knowledge and Awareness; (iii) Communication; and (iv) Availability of Advance Care Directive Information. Conclusions: From the findings, advance care directives were believed to be beneficial in decision making when patients, families, and ED staff agreed with the decisions made. Advance care directives were often made a long time ago but were useful to start conversations around goals of care and end‐of‐life care relevant to the patient's current situation. Findings in the present study further reinforced that an advance care directive was beneficial when used alongside goals of care at the point of care in EDs. [ABSTRACT FROM AUTHOR]

Meeting the end-of-life care needs of particular groups in Australia remains challenging, especially those people who are culturally and/or religiously diverse. One such group is those adherents to Islam, whose communities come from many parts of the world. to develop connections with the Islamic community, to understand their end-of-life care needs. over 12 months palliative care staff and members of the Islamic community met to prepare for and deliver a seminar to assist understandings between the Islamic community and palliative care services. A seminar, attended by 79 participants, addressed issues like palliative care and Islam; how palliative care works; advance care planning; care coordination; and bereavement. Many commonalities emerged, to provide a foundation for further activities; and the process demonstrated the importance of working together, and highlighted opportunities for shared collaborative work. [ABSTRACT FROM AUTHOR]

Background Emergency department (ED) clinicians are more frequently providing care, including end-of-life care, to older people. Objectives To estimate the need for ED end-of-life care for people aged ≥65 years, describe characteristics of those dying within 48 hours of ED presentation and compare those dying in ED with those dying elsewhere. Methods We conducted a retrospective cohort study analysing data from 177 hospitals in Australia and New Zealand. Data on older people presenting to ED from January to December 2018, and those who died within 48 hours of ED presentation, were analysed using simple descriptive statistics and univariate logistic regression. Results From participating hospitals in Australia or New Zealand, 10,921 deaths in older people occurred. The 48-hour mortality rate was 6.43 per 1,000 ED presentations (95% confidence interval: 6.31–6.56). Just over a quarter (n = 3,067, 28.1%) died in ED. About one-quarter of the cohort (n = 2,887, 26.4%) was triaged into less urgent triage categories. Factors with an increased risk of dying in ED included age 65–74 years, ambulance arrival, most urgent triage categories, principal diagnosis of circulatory system disorder, and not identifying as an Aboriginal or Torres Strait Islander person. Of the 7,677 older people admitted, half (n = 3,836, 50.0%) had an encounter for palliative care prior to, or during, this presentation. Conclusions Our findings provide insight into the challenges of recognising the dying older patient and differentiating those appropriate for end-of-life care. We support recommendations for national advanced care planning registers and suggest a review of triage systems with an older person-focused lens. [ABSTRACT FROM AUTHOR]

The article offers a perspective on the added responsibility of end-of-life health care for rural families in Australia. It describes the experience of rural carers of patients and the additional challenges they face, such as the stress of going to the city for health services, difficulty of navigating metropolitan health services and attitude of stoicism or self-sufficiency. It cites the benefits of end-of-life caring in a rural community and calls for providing practical help to rural carers.

Background: The Optimal Care Pathways (OCP) are a framework to promote high-quality and integrated cancer care for all Australians, from prevention through to end-of-life-care. Aboriginal and Torres Strait Islander people experience disproportionate cancer incidence and mortality, but little research has addressed whether cancer care for Aboriginal people meets the standards prescribed by the OCPs. This study aims to consider barriers and facilitators to quality cancer care for Aboriginal people. Methods: Semi-structured interviews were conducted with 30 health professionals who deliver care to Aboriginal people with cancer in primary care and hospital settings in New South Wales, Australia. Health professionals included Aboriginal Health Workers, nurses, general practitioners, and community workers. Interviews were conducted in 2019–2020 and explored participant perspectives of barriers and facilitators of optimal cancer care, particularly related to prevention, early detection, diagnosis, and treatment for Aboriginal people. Data were qualitatively analysed using framework analysis. Results: In general, participants perceived Aboriginal patients to have good access to preventive care. In terms of early detection and diagnosis, access to primary care, pathology, radiology, and some specialists (e.g. respiratory physicians) was seen as optimal. However, access to hospital-based gastroenterologists for colonoscopy was perceived to be poor due to long wait times. Access to optimal care for cancer treatment was perceived to be hindered due to the lack of bulk-billing for bowel cancer, breast cancer, and cardiothoracic surgery. Other barriers to care identified by participants included unclear referral pathways, poor communication between patient and the treating team, and a lack of timely provision of discharge summaries. Conclusions: Facilitators of optimal care during treatment and survivorship included: the Integrated Team Care and Close the Gap programs, and presence of key health workers to help patients navigate the health system. The major barriers to quality cancer care for Aboriginal people appeared to be to specialist and procedural access, demonstrating that the 'Inverse Care' law applied in reducing access for populations at higher risk of cancer. This qualitative project involves Yarns with 30 health professionals in Aboriginal community-controlled services and other services, and addresses barriers and facilitators to adherence to Optimal Care Pathways for diagnosis and treatment of cancer for Aboriginal people. [ABSTRACT FROM AUTHOR]

Background: Variation persists in the quality of end-of-life-care (EOLC) for people with cancer. This study aims to describe the characteristics of, and examine factors associated with, indicators of potentially burdensome care provided in hospital, and use of hospital services in the last 12 months of life for people who had a death from cancer. Method: A population-based retrospective cohort study of people aged ≥ 20 years who died with a cancer-related cause of death during 2014–2019 in New South Wales, Australia using linked hospital, cancer registry and mortality records. Ten indicators of potentially burdensome care were examined. Multinominal logistic regression examined predictors of a composite measure of potentially burdensome care, consisting of > 1 ED presentation or > 1 hospital admission or ≥ 1 ICU admission within 30 days of death, or died in acute care. Results: Of the 80,005 cancer-related deaths, 86.9% were hospitalised in the 12 months prior to death. Fifteen percent had > 1 ED presentation, 9.9% had > 1 hospital admission, 8.6% spent ≥ 14 days in hospital, 3.6% had ≥ 1 intensive care unit admission, and 1.2% received mechanical ventilation on ≥ 1 occasion in the last 30 days of life. Seventeen percent died in acute care. The potentially burdensome care composite measure identified 20.0% had 1 indicator, and 10.9% had ≥ 2 indicators of potentially burdensome care. Compared to having no indicators of potentially burdensome care, people who smoked, lived in rural areas, were most socially economically disadvantaged, and had their last admission in a private hospital were more likely to experience potentially burdensome care. Older people (≥ 55 years), females, people with 1 or ≥ 2 Charlson comorbidities, people with neurological cancers, and people who died in 2018–2019 were less likely to experience potentially burdensome care. Compared to people with head and neck cancer, people with all cancer types (except breast and neurological) were more likely to experience ≥ 2 indicators of potentially burdensome care versus none. Conclusion: This study shows the challenge of delivering health services at end-of-life. Opportunities to address potentially burdensome EOLC could involve taking a person-centric approach to integrate oncology and palliative care around individual needs and preferences. [ABSTRACT FROM AUTHOR]

Background: This study estimated the prevalence of evidence-based care received by a population-based sample of Australian residents in long-term care (LTC) aged ≥ 65 years in 2021, measured by adherence to clinical practice guideline (CPG) recommendations. Methods: Sixteen conditions/processes of care amendable to estimating evidence-based care at a population level were identified from prevalence data and CPGs. Candidate recommendations (n = 5609) were extracted from 139 CPGs which were converted to indicators. National experts in each condition rated the indicators via the RAND-UCLA Delphi process. For the 16 conditions, 236 evidence-based care indicators were ratified. A multi-stage sampling of LTC facilities and residents was undertaken. Trained aged-care nurses then undertook manual structured record reviews of care delivered between 1 March and 31 May 2021 (our record review period) to assess adherence with the indicators. Results: Care received by 294 residents with 27,585 care encounters in 25 LTC facilities was evaluated. Residents received care for one to thirteen separate clinical conditions/processes of care (median = 10, mean = 9.7). Adherence to evidence-based care indicators was estimated at 53.2% (95% CI: 48.6, 57.7) ranging from a high of 81.3% (95% CI: 75.6, 86.3) for Bladder and Bowel to a low of 12.2% (95% CI: 1.6, 36.8) for Depression. Six conditions (skin integrity, end-of-life care, infection, sleep, medication, and depression) had less than 50% adherence with indicators. Conclusions: This is the first study of adherence to evidence-based care for people in LTC using multiple conditions and a standardised method. Vulnerable older people are not receiving evidence-based care for many physical problems, nor care to support their mental health nor for end-of-life care. The six conditions in which adherence with indicators was less than 50% could be the focus of improvement efforts. [ABSTRACT FROM AUTHOR]

Objectives: To assess the influence of geographic remoteness on health care utilization at end of life (EOL) by people with advanced cancer in a geographically diverse Australian local health district, using two objective measures of rurality and travel-time estimations to health care facilities. Methods: This retrospective cohort study examined the association between rurality (using the Modified Monash Model) and travel-time estimation, and demographic and clinical factors, with the receipt of >1 inpatient and outpatient health service in the last year of life in multivariate models. The study cohort comprised of 3546 patients with cancer, aged ≥18 years, who died in a public hospital between 2015 and 2019. Results: Compared with decedents from metropolitan areas, decedents from some rural areas had higher rates of emergency department visits (small rural towns: aRR 1.29, 95% CI: 1.07–1.57) and ICU admissions (large rural towns: aRR 1.32, 95% CI: 1.03–1.69), but lower rates of acute hospital admissions (large rural towns: aRR 0.83, 95% CI: 0.76–0.90), inpatient palliative care (PC) (regional centers: aRR 0.85, 95% CI: 0.75–0.97), and inpatient radiotherapy (lowest in small rural towns: aRR 0.07, 95% CI: 0.03–0.18). Decedents from rural and regional centers had lower rates of outpatient chemotherapy and radiotherapy use, yet higher rates of outpatient cancer service utilization (p < 0.05). Shorter travel times (10–<30 minutes) were associated with higher rates of inpatient specialist PC (aRR 1.48, 95% CI: 1.09–1.98). Conclusions: Reporting on a series of inpatient and outpatient services used in the last year of life, measures of rurality and travel-time estimates can be useful tools to estimate geographic variation in EOL cancer care provision, with significant gaps uncovered in inpatient PC and outpatient service utilization in rural areas. Policies aimed at redistributing EOL resources in rural and regional communities to reduce travel times to health care facilities could help to reduce regional disparities and ensure equitable access to EOL care services. [ABSTRACT FROM AUTHOR]

Objectives. To describe current and planned processes and outcome measures to address implementation of the six end-of-life actions in the National Safety and Quality Health Service (NSQHS) Standards (2nd edn) and explore associated barriers and enablers. Methods. This study used an exploratory mixed methods national survey of acute healthcare facilities between September 2018 and March 2019. This study involved public and private facilities (N = 765) that provided end-of-life care, which are required to be accredited to the NSQHS Standards. Participants include those responsible for reporting implementation of end-of-life care actions at a facility providing end-of-life care. Participants were asked what processes and outcome measures were implemented or being planned to address the end-of-life care actions, and the associated barriers and enablers. Results. Fifty respondents (6.5% response rate) from across Australia contributed data, reporting greater confidence in addressing Actions 5.16: Clinicians have access to Specialist Palliative Care Services; 5.17: Advance care plans can be received from patients and stored in medical records; and 5.18: Supervision and support is available for workforce providing end-of-life care. Barriers associated with the actions that were the most challenging to address included: competing clinical priorities, and insufficient resources to provide best practice end-of-life care; and the burdensome nature of conducting audits. Enablers included: (1) local, jurisdictional, and national strategic plans and policies; (2) support from Specialist Palliative Care Services; (3) access to resources and data; (4) standardised approaches to implementation and measuring outcomes; and (5) clinician, consumer and community engagement and education on end-of-life care. Conclusion. Enablers and barriers in implementing the six end-of-life care actions were identified. Respondents reported that high-level support and direction, system-wide approaches, practical clinical support, and widespread community and clinician engagement would enable their facility to better address the end-of-life actions. [ABSTRACT FROM AUTHOR]

Background: Paramedic practice is diversifying to accommodate evolving global health trends, including community paramedicine models and growing expertise in palliative and end-of-life care. However, despite palliative care specific clinical practice guidelines and existing training, paramedics still lack the skills, confidence and clinical support to provide this type of care. Aim: To elicit paramedics', palliative care doctors and nurses', general practitioners', residential aged care nurses' and bereaved families and carers' experiences, perspectives, and attitudes on the role, barriers and enablers of paramedics delivering palliative and end-of-life care in community-based settings. Design: A qualitative study employing reflexive thematic analysis of data collected from semi-structured online interviews was utilised. Setting/participants: A purposive sample of 50 stakeholders from all Australian jurisdictions participated. Results: Five themes were identified: positioning the paramedic (a dichotomy between the life saver and community responder); creating an identity (the trusted clinician in a crisis), fear and threat (feeling afraid of caring for the dying), permission to care (seeking consent to take a palliative approach) and the harsh reality (navigating the role in a limiting and siloed environment). Conclusion: Paramedics were perceived to have a revered public identity, shaped by their ability to fix a crisis. However, paramedics and other health professionals also expressed fear and vulnerability when taking a palliative approach to care. Paramedics may require consent to move beyond a culture of curative care, yet all participant groups recognised their important adjunct role to support community-based palliative 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]

Aim: To explore nurses' and family members' perspectives of family care at the end of life, during restricted visitation associated with the COVID‐19 pandemic. Background: To minimise the transmission of COVID‐19, stringent infection prevention and control measures resulted in restricted hospital access for non‐essential workers and visitors, creating challenges for the provision of family‐centred care at the end of life. Design: Qualitative descriptive approach based on naturalistic inquiry. Methods: At a large public hospital in Melbourne, Australia, individual semi‐structured interviews were undertaken with 15 registered nurses who cared for patients who died during restricted visitation associated with the COVID‐19 pandemic, and 21 bereaved family members. COREQ guidelines informed analysis and reporting. Results: Five themes developed from the data: (i) impact of visitor restrictions, which describes uncertain, ambiguous and arbitrary rules, onerous and inconsistent requirements; (ii) nurse‐family communication; (iii) family‐centred care and interrupted connections; (iv) well‐being and negative emotions; and (v) suggestions for a better way, such as moving away from the black and whiteness of the rules, prioritising communication, compassion and advocacy. Conclusions: Negative consequences for communication and the patient‐family connection at the end of life were felt deeply. The evolving COVID‐19 rules that were frequently revised and applied at short notice, and the subsequent consequences for clinical practices and care were felt deeply. Relevance to Clinical Practice: Technology‐facilitated communication, innovation and increased resources must be prioritised to overcome the challenges described in this study. A family‐centred approach to care and emphasising the patient‐family connection at the end of life is fundamental to minimising trauma and distress associated with future public health emergencies. Patient or Public Contribution: Bereaved family members contributed their first‐hand experience. Members of the health service's patient experience team ensured the research was conducted in accordance with health service guidelines for patient and public contribution. [ABSTRACT FROM AUTHOR]

End of life care in the emergency department is environmentally and culturally challenging. The aim of this study was to determine Australian emergency department doctors and nurses' perceptions of their roles in providing end of life care in this environment. Perceptions of end-of-life care roles were identified through semi-structured interviews with doctors and nurses using Dieklemann's seven interpretative stages of analysis guided by phenomenological interpretive underpinnings (hermeneutics). Nine nurses and seven doctors were recruited using purposive sampling. Organisations for emergency doctors (Australasian College for Emergency Medicine: ACEM) and emergency nurses (College of Emergency Nursing Australasia: CENA) were approached to advertise the study and recruit participants across Australia via email. Results were categorised into four themes namely: role perception; the intensive nature of the role; emotional burden; and role integration. The participants stated that end of life care was provided according to their professional roles and responsibilities. Doctors and nurses had distinct tasks, some of which overlapped. The accounts of the participants in relation to their understanding of each other's roles highlighted differences in how nurses perceived the role of doctors, and vice versa. The participants spoke about aspects that had an impact on their role of practicing end of life care in the emergency department setting. In this study, all participants expressed concern for dying patients in the emergency department. The delivery of quality end of life care was believed to be paramount and required staff to work together to achieve the best outcome for the dying patient and their families. Regardless of the similarities and differences that were perceived within their roles, the nurses and doctors believed that their main objective was to ensure that comfort care was provided to dying patients. [ABSTRACT FROM AUTHOR]

Introduction: People living with dementia in care homes can benefit from palliative approaches to care; however, not all will require specialist palliative care. The generalist aged care workforce is well placed to provide most of this care with adequate training and support systems in place, but little is known about their experiences. Objective: To describe staff perspectives on providing quality end-of-life care for people living with dementia in residential care and their families. Methods: Focus groups and semi-structured interviews were conducted with residential aged care managerial and frontline staff in Australia who were caring for residents living with dementia and end-of life needs. A comprehensive, then snowballing sampling strategy was used in participating care homes. Transcripts were analyzed using reflexive thematic analysis. Results: Fifteen semi-structured interviews and six focus groups were undertaken with 56 participants across 14 sites across two Australian states. Five themes were identified: putting the resident at the center (creating homes not hospitals, knowing the individual, a case management approach); articulating goals to grant wishes (initiating the conversation, broadening death literacy, avoiding hospitalization); a collective call to action (staffing the home, recognizing deterioration and escalating issues, communication channels and engaging GPs, managing medications, psychosocial supports); educating to empower staff (governance and guidance, mentoring juniors, self-care); and facilitating family acceptance (setting expectations, partnering in care, access at all hours). Discussion: Aged care staff are committed to providing person-centered palliative and end-of-life care for people living with dementia, recognizing the intrinsic value of each resident, regardless of their declining state. Frontline and managerial staff consider advance care planning, collectively working as part of a multidisciplinary team, access to targeted palliative and end-of-life education and training, and engaging families as key priorities to providing high quality care in care homes. [ABSTRACT FROM AUTHOR]

Organ donation after voluntary assisted dying (VAD) in Australia may potentially increase organ transplant rates. Despite significant international experience with donation after VAD, there has been little discussion of this in Australia. We review potential ethical and practical concerns relating to donation after VAD and advocate action to establish programmes in Australia that ensure safe, ethical and effective donation after VAD. [ABSTRACT FROM AUTHOR]

The prevalence and factors associated with advance care planning (ACP) documents for Australian public hospital inpatients were determined through cross‐sectional study of 123 Victorian hospitals between July 2016 and December 2018. Of the 611 786 included patients, 2.9% had an ACP document. Odds increased significantly in those comorbid, unpartnered, regional and >5 admissions, which supports future ACP conversations and document creation. [ABSTRACT FROM AUTHOR]

The law does not require health professionals to provide medical treatment that is of no benefit to the patient. Despite this, medical staff who are caring for patients at the end of their lives frequently experience pressure from the patients' families to prolong their lives. This article considers the Australian law relating to the right to demand treatment when a loved one is dying, and whether an increasing emphasis on shared decision-making has introduced uncertainty. It discusses factors that affect the application of the law, including widespread ignorance of the law, the difficulty of deciding whether a treatment is futile and the need to ration scarce health care resources. It also introduces the perspectives of three senior medical practitioners on disputes with families of dying patients. The article concludes that community education is needed on legal and medical issues at the end of life, including conversations about advance care directives. [ABSTRACT FROM AUTHOR]

Recognition of the importance of end-of-life care will enable improvements in the quality of care delivered to patients and their families. Australia is experiencing an increasing number of deaths, (many expected), with an aging population who are living longer, often with multimorbidity. This makes end of life care a priority. The last year of someone's life takes place in a complex healthcare system, with increasing pressures on care delivery, placing the spotlight on health service providers to ensure that teams and individuals are supported and enabled to provide such care. Two rapid literature reviews identified best practice principles and processes for delivering safe and high-quality end-of-life care in acute care, aged care and community settings. The reviews identified that end-of-life care is experienced within the whole health and social care system, including hospital admissions interspersed with care in the community, outpatient and emergency department visits and potentially admission to a hospice. Much of this last year of life is spent at home, which may be a personal residence, an aged care facility, prison, supported accommodation or even on the streets. Transitions across settings requires seamless care, as well as organisational readiness to deliver safe and culturally appropriate care. This is more important now with end-of-life care subject to quality assurance mechanisms within the National Safety and Quality Health Service Standards (2nd edn): Comprehensive care. This requires all sectors to work collaboratively when caring for someone at the end of their life in order to see positive changes in care outcomes. [ABSTRACT FROM AUTHOR]

The median age of voluntary assisted dying applicants is similar in Victoria and Western Australia (about 73 years).[[15]] Most had advanced cancer (Victoria: 82%; Western Australia: 68%), neurodegenerative diseases (especially motor neurone disease), or organ failure, and most were receiving palliative care (Victoria: 81%; Western Australia: 85%). Keywords: Euthanasia; Terminal care; Legislation, medical EN Euthanasia Terminal care Legislation, medical 208 210 3 09/05/23 20230904 NES 230904 Until six years ago, there were no voluntary assisted dying laws in Australia, despite strong public support and fifty attempts in parliaments around the country. During 2021-22, voluntary assisted dying was involved in 0.58% of all deaths in Victoria,[15] and 1.1% of all deaths in Western Australia.[16] It is involved in 0.59% of deaths in Oregon,[18] where self-administered assisted dying has been available since 1998 for people expected to live less than six months. 17 Sellars M, White B, Yates P, Willmott L. Medical practitioners' views and experiences of being involved in voluntary assisted dying in Victoria, Australia: a qualitative interview study among participating doctors. [Extracted from the article]

Background: Without objective screening for risk of death, the palliative care needs of older patients near the end of life may be unrecognised and unmet. Aim: This study aimed to estimate the usefulness of the Criteria for Screening and Triaging to Appropriate aLternative care (CriSTAL) tool in determining older patients' risk of death within 3-months after initial hospital admission. Methods: A prospective cohort study of 235 patients aged 70+ years, who presented to two rural emergency departments in two adjacent Australian states, was utilised. The 'risk of death' of each patient was screened with the CriSTAL prognostic tool. Their 3-month follow-up outcomes were assessed through telephone interviews and a clinical record review. Findings: A CriSTAL cut-off score of more than 7 yielded a sensitivity of 80.7% and specificity of 70.81% for a 3-month risk of death. Palliative care services were only used by 31% of the deceased in their last trimester of life. Conclusion: Prognostic tools provide a viable means of identifying individuals with a poor prognosis. Identification can trigger an earlier referral to palliative care, which will benefit the patient's wellbeing and quality of life. [ABSTRACT FROM AUTHOR]

Background: Depression is prevalent in people with very poor prognoses (days to weeks). Clinical practices and perceptions of palliative physicians towards depression care have not been characterised in this setting. The objective of this study was to characterise current palliative clinicians' reported practices and perceptions in depression screening, assessment and management in the very poor prognosis setting. Methods: In this cross-sectional cohort study, 72 palliative physicians and 32 psychiatrists were recruited from Australian and New Zealand Society of Palliative Medicine and Royal Australian and New Zealand College of Psychiatrists between February and July 2020 using a 23-item anonymous online survey. Results: Only palliative physicians results were reported due to poor psychiatry representation. Palliative physicians perceived depression care in this setting to be complex and challenging. 40.0% reported screening for depression. All experienced uncertainty when assessing depression aetiology. Approaches to somatic symptom assessment varied. Physicians were generally less likely to intervene for depression than in the better prognosis setting. Most reported barriers to care included the perceived lack of rapidly effective therapeutic options (77.3%), concerns of patient burden and intolerance (71.2%), and the complexity in diagnostic differentiation (53.0%). 66.7% desired better collaboration between palliative care and psychiatry. Conclusions: Palliative physicians perceived depression care in patients with very poor prognoses to be complex and challenging. The lack of screening, variations in assessment approaches, and the reduced likelihood of intervening in comparison to the better prognosis setting necessitate better collaboration between palliative care and psychiatry in service delivery, training and research. [ABSTRACT FROM AUTHOR]

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: Dementia is a leading cause of death in developed nations. Despite an often distressing and symptom laden end of life, there are systematic barriers to accessing palliative care in older people dying of dementia. Evidence exists that 70% of people living with severe dementia attend an emergency department (ED) in their last year of life. The aim of this trial is to test whether a Carer End of Life Planning Intervention (CELPI), co-designed by consumers, clinicians and content specialists, improves access to end of life care for older people with severe dementia, using an ED visit as a catalyst for recognising unmet needs and specialist palliative care referral where indicated.Methods: A randomised controlled trial (RCT) enrolling at six EDs across three states in Australia will be conducted, enrolling four hundred and forty dyads comprising a person with severe dementia aged ≥ 65 years, and their primary carer. Participants will be randomly allocated to CELPI or the control group. CELPI incorporates a structured carer needs assessment and referral to specialist palliative care services where indicated by patient symptom burden and needs assessment. The primary outcome measure is death of the person with dementia in the carer-nominated preferred location. Secondary outcomes include carer reported quality of life of the person dying of dementia, hospital bed day occupancy in the last 12 months of life, and carer stress. An economic evaluation from the perspective of a health funder will be conducted.Discussion: CELPI seeks to support carers and provide optimal end of life care for the person dying of dementia. This trial will provide high level evidence as to the clinical and cost effectiveness of this intervention.Trial Registration: ACTRN12622000611729 registered 22/04/2022. [ABSTRACT FROM AUTHOR]

Previous research on general practitioners' (GPs') involvement in end‐of‐life care has largely focused on a specific aspect of care or has provided broad overviews that failed to capture individual variations in patient management. This qualitative study aimed to explore Australian GPs' feedback and reflections on the individual‐level care provided for patients in their last year of life. The findings of the study were drawn from a nation‐wide survey of GPs' experiences in end‐of‐life care. We analysed responses from 63 GPs for 267 of the 272 reported deaths. Factors influencing delivery of optimal end‐of‐life care reported by GPs were categorised into four groups: patient‐related factors, carer‐related factors, interactions between GPs and patients/carer‐related factors and broader health system issues. Each group included both barriers and facilitators. Our study highlighted importance of the emotional dimensions of therapeutic relationships with patients and their family, availability and capacity of family support and smooth communication and continuity of care between GPs and hospitals in delivery of optimal end‐of‐life care. Lack of these facilitators, misconceptions of palliative care and conflicts on implementing care plans among patients and their family tended to impede delivery of such care. On the basis of our findings in the present study and previous literature, we conclude that improved end‐of‐life care in general practice requires comprehensive approaches to supporting both the GP and family to provide care in patients' preferred place, such as enhanced palliative care training and improved availability of external support for GPs, higher levels of hospital‐based services reaching into community settings and broader community‐based resources for families beyond simply the healthcare system. [ABSTRACT FROM AUTHOR]

In Australia, cancer is the second leading cause of death in adolescents and young adults (AYA). In an audit of 76 AYA decedents known to a comprehensive cancer center, most were male (63%), and most had a parent as primary carer (78%). Median age at diagnosis was 21 years (range: 15–27). Median time from diagnosis to first palliative care consultation was 9 months, and from first palliative care review to death, 4 months. Location of death was hospital (41%), home (24%), and palliative care unit (16%). Eleven (65%) of 17 patients who wished to die at home achieved this. [ABSTRACT FROM AUTHOR]

Background: Sensitive and patient-centred discussion about life expectancy has clear benefits for patients with advanced cancer and their families. The perceptions of oncology nurses about disclosure of life expectancy, and the barriers to disclosure, have rarely been explored. Objectives/Aims/Hypotheses: To examine oncology nurses' perceptions of the: (1) proportion of patients with advanced cancer who want, receive and understand estimates of life expectancy; (2) reasons why doctors may not provide estimates of life expectancy. Design: Cross-sectional survey. Methods: Australian oncology nurses who were members of a professional society or worked at a participating metropolitan cancer centre were emailed a link to an anonymous online survey. Participants provided socio-demographic characteristics and their perceptions about the proportion of patients with advanced cancer who (a) want, (b) are provided with, (c) receive and (d) understand estimates of life expectancy, as well as the reasons estimates of life expectancy may not be provided. Results: A total of 104 nurses participated. While 51% of nurses perceived that most patients (>75%) want to be provided with an estimate of their life expectancy, 63% of nurses reported that <50% of patients were provided with an estimate. Further, 85% of nurses indicated that <50% of patients understand the estimate. The most frequent reason nurses perceived doctors did not provide an estimate of life expectancy was because the doctor didn't have an accurate idea of life expectancy (80.8%). Almost one-fifth of nurses (18.3%) thought that doctors did not provide estimates because they felt it was not their responsibility to do so. Conclusions: Strategies to ensure a patient-centred approach to life expectancy discussions with patients with advanced cancer are urgently needed. Impact statement: Oncology nurses perceive that many patients with advanced cancer are not provided with an accurate estimate of their life expectancy and few understand the information provided to them. [ABSTRACT FROM AUTHOR]

Purpose To gain greater understanding of what it means to care for older patients dying from traumatic injuries in the emergency department. Design A Heideggerian phenomenological design using the methods of Van Manen. Methods: In‐depth, face‐to‐face interviews were conducted with five emergency nurses who worked in an emergency department in Australia. Interview data were interpreted using a Heideggerian hermeneutic approach and guided by Van Manen's lifeworld analysis focusing on the experiential aspects of lived time (temporality) and lived space (spatiality) in the phenomenon. Findings The older patient reflects the passage of chronological time. This temporal aspect shaped the participant experience as there was a sudden awareness of the impact of the injuries sustained on the fragile physical condition of the patients. There was an unexpectedness and unpreparedness which was related to a precognitive assumption that the older patient would die from an age‐related comorbid condition. Also of significance was the sacred liminal space in which the nurses worked to facilitate the dying patient transition from life to death. Conclusions: The existential dimensions of temporality and spatiality revealed new insights into what it means to care for elderly patients dying from traumatic injuries. Temporal aspects were shaped by the longevity of the lives of patients and spatiality explored the liminal space where participants were morally guided to deliver end of life care with dignity and respect for a long‐lived life taken by trauma. Clinical relevance: The findings may contribute to further understanding of what shapes the experience for emergency nurses delivering EOL care in the ED, with specific relevance and focus on the older patient with traumatic injuries. Hermeneutic research may also encourage clinicians to explore phenomena to reveal new understandings that will inform further dialogue and future research. [ABSTRACT FROM AUTHOR]

Aims It is recommended that patients and clinicians discuss end-of-life deactivation of their implantable cardioverter defibrillator (ICD) prior to device implantation and throughout the illness trajectory to facilitate shared decision-making. However, such discussions rarely occur, and little is known about patients' openness to this discussion. The purpose of this study was to explore factors associated with patients' openness to discussing end-of-life ICD deactivation with clinicians. Methods and results This cross-sectional study recruited 293 patients with an ICD from outpatient clinics in the USA, Australia, and South Korea. Patients were classified into an open or resistant group based on their desire to discuss device deactivation at end of life with clinicians. Multivariable logistic regression was used to explore factors related to patients' openness to this discussion. About half of the participants (57.7%) were open to discussing such issues with their clinicians. Factors related to patients' openness to discussing device deactivation at end of life were living with someone, not having severe comorbid conditions (cancer and/or chronic kidney disease), greater ICD knowledge, and more experience discussing end-of-life issues with clinicians (odds ratio: 0.479, 0.382, 1.172, 1.332, respectively). Conclusion Approximately half of the ICD recipients were reluctant to discuss device deactivation at end of life with clinicians. Unmodifiable factors were their living arrangement and severe comorbidity. ICD knowledge and prior experience discussing end-of-life issues were potentially modifiable factors in the future. These factors should be addressed when assessing patients' readiness for a shared discussion about device deactivation at end of life. [ABSTRACT FROM AUTHOR]

The registered nurse has crucial preventative, therapeutic, sociocultural, and advocacy roles in promoting quality holistic patient-centred palliative care. This paper examines, describes, and analyses this multifaceted role from an antipodean perspective. We conducted systematic searches using PubMed, Google Scholar, government guidelines, authoritative body regulations, quality control guidelines, and government portals pertaining to palliative care nursing in Australia. This paper relies upon the information garnered from publications, reports, and guidelines resulting from these searches and analyses. The fundamental principles and guiding values of palliative care (and nursing) and the raison d'etre for palliative care as a discipline are underscored and expanded on. Australian Clinical Practice Guidelines (CPGs) pertaining to palliative end-of-life (EOL) nursing care and associated services are discussed. The relevant NMBA nursing standards that RNs need to have to administer opioids/narcotics in palliative care are summarised. The identification of patients who need EOL care, holistic person-centred care planning for them, and consultative multidisciplinary palliative clinical decision making are discussed in the palliative care context. Several components of advance care planning apropos health deterioration and conflicts are discussed. Several aspects of EOL care, especially palliative nursing care, are analysed using research evidence, established nursing and palliative care standards, and the Australian EOL CPGs. [ABSTRACT FROM AUTHOR]

Residential aged care facilities (RACFs) face severe challenges in the provision of high-quality end of life care. A pilot of a nurse-led end-of-life palliative care consultative service (CiMaS) supporting RACFs was conducted in three RACFs in the West Moreton Region of Queensland, Australia, from May 2018. We conducted a mixed method evaluation comprising: a chart audit of deaths in the 12 months before and after the intervention; focus groups with RACF staff; and interviews with facility directors, primary family members and GPs. Quantitative and Qualitative data were assessed separately with statistical and thematic analyses respectively. The RACFs cared for 277 residents. There were 24 pre-intervention deaths and 44 in the intervention period (28 (64%) referred to CiMaS). There was widespread support for the service. Families felt supported and knowledgeable about what was happening. Care plans were almost always recorded in health records. Patients' symptoms appeared to be better recognised and managed. Staff and Facility managers felt more support than previously, with more responsive and reliable out of hours support. There were significant care improvements in patients not referred to CiMaS, suggesting a learning effect. GPs observed improvements in nursing staff confidence and support to families. Transfers to hospitals fell by two-thirds for both referred and non-referred patients compared with the year before implementation. The program was both efficient and effective. [ABSTRACT FROM AUTHOR]

End-of-life care involves treatment and support offered to terminally ill individuals and their caregivers. Effective communication and decision-making, illness and symptom management, relationship with doctors, characteristics of the health care team, and the involvement and needs of caregivers have all been proposed to contribute to the quality of the end-of-life experience. This study sought to establish bereaved caregivers' experiences of the quality of the elements of end-of-life care delivered to their loved ones. Bereaved caregivers who had lost a loved one who was cared for in an acute care University-affiliated hospital, with 670 beds, located in the Australian Capital Territory during the previous 6−12 months (N=91), were surveyed using a modified version of the Canadian Health Care Evaluation Project questionnaire. The findings indicated that the bereaved caregivers were generally very satisfied with their loved one's end-of-life care. The age of the caregiver, the preferred location of death for both patient and caregiver, if death was expected, and religious affiliation were associated with satisfaction of the end-of-life care delivered. Key areas for improvement of end-of-life care included factors related to the relationships between doctors and those receiving care, characteristics of the health care team, illness management, communication and decision-making, and the involvement of caregivers. These findings have significant implications for this hospital and those seeking to improve outcomes in end-of-life care settings more widely, by providing baseline data on caregiver-evaluated care quality and identifying high-priority areas for targeted intervention. [ABSTRACT FROM AUTHOR]

Since 2015 a whole-of-community program to promote advance care planning (ACP) within one Queensland Hospital and Health Service (HHS) catchment has spread statewide, financed by Queensland Health (QH) agencies and led by the Statewide Office of Advance Care Planning (SOACP). The program aims to identify ACP-eligible patients, invite and finalise ACP discussions, and ensure documented care preferences are easily retrievable by clinicians to guide future care if a person loses capacity. The SOACP established a digital infrastructure whereby quality-audited ACP documents are uploaded to a software platform accessible to all QH clinicians, private medical specialists, ambulance paramedics, general practitioners (GPs), and registered nurses, including those in residential aged care facilities (RACFs). The SOACP also hosts a website providing resources for clinicians and patients, delivers educational events and mentorship to GPs and hospital and RACF staff, and employs ACP facilitators working across all QH HHSs. The program has seen yearly increases in the numbers of ACP documents uploaded from around the state, with up to 79% of eligible patients in some hospitals receiving ACP, significant ACP uptake in RACFs, and acceptance by GPs to engage in ACP. Audits reveal high concordance between stated preferences and hospital care received, and ACP patients, compared to matched non-ACP controls, more frequently die out of hospital, have fewer inpatient days during their last 6 months of life, and receive less invasive care, with similar results seen among same-patient cohorts post-ACP. Barriers and enablers to ACP have been identified which will inform program evolution. What is known about the topic? Advance care planning (ACP) for end-of-life care benefits patients, their families and the healthcare system, but programs for enhancing ACP uptake and effects at a whole-of-community level are lacking. What does this paper add? We describe a statewide program for promoting ACP within hospitals, general practice and residential aged care. Key components were creating a central office of ACP, establishing digital infrastructure for making advance care plans accessible to a wide clinician audience, providing education in ACP, and training ACP facilitators. What are the implications for practitioners? Increasing ACP uptake requires a systematised approach to promoting ACP within all sectors of healthcare and the general public. [ABSTRACT FROM AUTHOR]

Background: Inequity in access to palliative care and symptom relief is one of the greatest disparities in global health care. A public health approach to palliative care is underpinned by the social view of health that puts an emphasis on equity, community engagement and empowerment, a supportive policy environment, and social determinants of health. Consideration of equity in policy is critical so that it can be translated into equitable services. However, the extent to which Australian palliative care policies incorporate equity, and their translation into actual actions have not been extensively examined. This exploratory study aimed to examine the extent to which Australian federal and South Australian palliative care policies and initiatives incorporate equity, and to identify evidence gaps and research priorities that can inform equity-oriented policies and practices. Methods: We reviewed 25 federal and South Australian documents relating to palliative care published over the past five years. Documents were publicly available from the Australian Government Department of Health website. We used search filter 'Palliative care and end of life' in the Department's resource webpage to narrow down documents to those with palliative care and end of life in the document title and/or content. The initial list was discussed in the research team to ensure key documents are included. Supplementary to document review, we conducted five key informant interviews in South Australia. Interview participants were people from the policy sector, not-for-profit organisations, a funding body and a community advocacy group in South Australia who had knowledge and experience in palliative care policy, practice and research. Documents and interview transcripts were imported into the NVivo 12 software for coding. Content analysis looked at the frequencies of relevant terms, and then more detailed inductive and deductive thematic analysis was undertaken which was guided by an equity action framework. Results: Overall, we found incremental steps forward over the past few years in considering equity in Australian palliative care policies. Key themes that emerged from the study were: identifying population groups experiencing poor access to palliative care, strategies to improve access including increased awareness of palliative care, flexible models of care, building workforce capacity, and the need for greater investment in palliative care research and evaluation. Strategies to address systemic barriers as well as social, political and cultural determinants of inequity was less evident in policy documents. There was little evidence of actions to engage and empower communities. Interviews provided insight on key areas of priority for future palliative care research. Conclusions: Achieving the goal of equity in palliative care for all is complex and multifaceted. It requires strong commitment and actions at policy and government level but also in clinical practice, workforce planning and capacity building, community engagement and research investment to implement and evaluate public health approaches to palliative care. [ABSTRACT FROM AUTHOR]

We examine the role of stakeholders in constructing new socio-cultural narratives of advance care planning in the Chinese community in Australia. Applying the communication theory of opinion leader(ship) and drawing on data from 41 interviews and field observation notes, we explore how stakeholders establish their authority and perform their expertise. Data analysis shows stakeholders have gained their opinion leadership status through demonstrating their ability to link the Chinese cultural values of family harmony and parental duty and the notions of self-empowerment and independence in official advance care planning promotions in Australia. [ABSTRACT FROM AUTHOR]

Background: Chronic heart failure has a high mortality and early provision of palliative care supports complex decision-making and improves quality of life.Aim: To explore whether and when a palliative approach was adopted during the last 12 months of life in patients who experienced an in-hospital death from heart failure.Design: Retrospective medical record review of all deaths from chronic heart failure (January 2010 to December 2019).Participants: Admissions with chronic heart failure resulting in death were analysed from an Australian tertiary referral centre.Results: The cohort (n=517) were elderly (median age 83.8 years IQR=77.6-88.7) and male (55.1%). Common comorbidities were ischaemic heart disease (n=293 56.7%) and atrial fibrillation (n=289 55.9%). Life sustaining interventions occurred in 97 (18.8%) patients. In 31 (6.0%) patients referral to specialist palliative care occurred prior to, and in 263 (50.9%) during, the terminal admission. Opioids were prescribed to 440 (85.1%) patients. Comfort care was the documented goal in 158 patients (30.6%). A palliative approach was significantly associated with prior admission in the preceding 12 months (OR=1.5 95% CI=1.0-2.1 p<0.043), receiving outpatient care (OR=2.6 95% CI=1.6-4.1 p<0.01), and admissions in the latter half of the decade (OR=1.5 95% CI=1.0-2.0 p<0.038).Conclusion: Despite greater adoption of a palliative approach in the terminal admission over the last decade, a significant proportion of patients receive palliative care late, just prior to death. [ABSTRACT FROM AUTHOR]