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Background: Globally, digital transformation has been sweeping through healthcare in recent years. Reflecting this global change, Australia's health and social care sector is also undergoing rapid digitalisation. Digital approaches can enhance care planning and coordination activities, as well as improve efficiencies in documentation and coordination of care. As the aged care environment continues to become digitalised into the future, there is an expectation that nurses practise the delicate art and science of compassionate caregiving in a technology-proliferated environment where care planning, provisioning, and documenting require digital knowledge and skills., Aim: To explore the perspectives and expectations of nurses working in residential aged care setting regarding the utilisation of technology to enhance care at the end-of-life., Methods: A qualitative descriptive research study design based on the secondary analysis of data collected as part of a larger study. Data collection was conducted using six semi-structured interviews and 11 focus group discussions with care workers, nurses, and nursing managers working in Australian residential aged care setting., Results: A total of 64 participants took part in this study. Overall, four themes were generated from the data as following: engagement with various digital systems and platforms; 2) ambivalence toward technology; 3) challenges and concerns in technology use; and 4) anticipated technology roles in end-of-life care. This study found that, nurses in Australian RAC are open to engage with technologies for end-of-life provision, despite some ambivalence and challenges encountered in the process., Conclusion: Nurses in residential aged care have an important role in end-of-life care of many older Australians. Digital approaches offer care and coordination opportunities however require the aged care sector and nurses to take up these opportunities. While nurses demonstrate openness to technology, focus needs to be placed on technology use support. This presents an opportunity for nurses to actively shape the future of digital innovations in aged care, ensuring high-quality, compassionate care for residents in their final stages of life., (© 2024. The Author(s).)

Background: As our population ages, the demand for aged care services and palliative care is expected to increase. Allied health professionals have a diverse set of skills to offer in the management of older adults. This scoping review aimed to identify what evidence exists to support the best practice of allied health clinicians in palliative and aged care. Methods: Searches were conducted using broad keywords and MeSH headings with relevance to palliative, ageing and allied health care in the databases Ovid MEDLINE (R), CINAHL, EMCARE, INFORMIT, REHABDATA, PEDRO and SCOPUS, as well as the grey literature. Results: Only 15 studies met the inclusion criteria. A prominent finding was that regular exercise interventions delivered improved mobility, balance, sleep and quality of life outcomes when measured ( n = 5). Broader allied health input and outcomes, such as nutrition, were not well described, other than to suggest an interprofessional approach contributed to health benefits where these were observed. Conclusions: The lack of research creates uncertainty about what excellent care looks like and how it can be measured, making it harder for allied health professionals to advocate for funded time in providing care at the end of life and leading to poorer outcomes for older adults.

Online healthcare information has the potential to improve health outcomes via the widespread, cost-effective translation of research evidence into practice by healthcare professionals and use by consumers. However, comparatively little is known about how healthcare professionals and consumers engage with healthcare websites, or whether the knowledge that is made available through digital platforms is translated into better health outcomes. To realise the potential of such resources, we argue that an evidence-based framework-grounded in a nuanced understanding of how audiences engage with and use information provided by healthcare websites-is needed. The goal of this paper is to outline a case for the development of a best-practice framework that can guide the development of websites that provide healthcare information to clinicians and consumers. In addition to supporting the design of more effective online resources, a common framework for understanding how better health outcomes can be achieved via digital knowledge translation has the potential to significantly improve patient outcomes in the face of a complex, rapidly changing and resource-constrained healthcare landscape., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

The grief, loss and bereavement needs of the families of those living and dying in residential aged care setting is not very well understood. This systematic review examines grief, loss, and bereavement experience of, and interventions relating to, family caregivers of those entering, living and dying in residential aged care. Out of 2023 papers that were identified, 35 met the inclusion criteria which included (n=28) qualitative and (n=7) quantitative intervention studies. The qualitative findings indicated quality of care provided to the resident at the end of their life, and after death care influenced family caregivers' grief reactions. The intervention studies revealed that educational interventions have the potential to lead to some benefits in the context of grief loss and bereavement outcomes. Recognizing the emotional experiences and support needs of families and carers may enhance the understanding of the ageing, caring, dying, grieving pathway for older people and their families., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Author(s). Published by Elsevier B.V. All rights reserved.)

Background: COVID-19 disrupted access to bereavement support. The objective of this study was to identify the bereavement supports used by Australians during the COVID-19 pandemic, perceived helpfulness of supports used, prevalence and areas of unmet support need, and characteristics of those with unmet support needs., Methods: A convenience sample of bereaved adults completed an online questionnaire (April 2021-April 2022) about their bereavement experiences including support use and perceived helpfulness, unmet support needs and mental health. Multiple logistic regression was conducted to determine sociodemographic correlates of unmet needs. Open-ended responses were examined using content analysis to determine key themes., Results: 1,878 bereaved Australians completed the questionnaire. Participants were mostly women (94.9%) living in major cities (68%) and reported the death of a parent (45%), with an average age of 55.1 years (SD = 12.2). The five most used supports were family and friends, self-help resources, general practitioners, psychologists, and internet/online community groups. Notably, each was nominated as most helpful and most unhelpful by participants. Two-thirds (66%) reported specific unmet support needs. Those with unmet needs scored lower on mental health measures. Correlates of unmet needs included being of younger age, being a spouse or parent to the deceased; reporting more impacts from public health measures, and not reporting family and friends as supports. The most frequent unmet need was for social support after the death and during lockdown., Conclusions: This study demonstrates the complexity of bereavement support needs during a pandemic. Specialised grief therapy needs to be more readily available to the minority of grievers who would benefit from it. A clear recommendation for a bereavement support action plan is to bolster the ability of social networks to provide support in times of loss. The fostering of social support in the wake of bereavement is a major gap that needs to be addressed in practice, policy, and research., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Ivynian et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

A Massive-Open-Online-Course (MOOC) on death and dying (Dying2Learn) was offered in 2020, designed to build conversations about death as a natural part of life. In week 1, the content focused on how today's society engages with death through the language we use, humour, public mourning and funerals. This study investigated 2020 MOOC participants' responses to an online activity reflecting on funerals and memorials during the time of COVID-19. From this activity, n = 204 responses were analysed qualitatively. Themes included the positives and negatives of virtual funeral attendance (e.g. opportunity to have a way to participate when travel barriers existed, versus a sense of impersonal voyeurism); and the challenges related to the inability to physically comfort the bereaved due to physical distancing requirements. Comments made as part of this MOOC activity provide a unique insight into the community's experience of funeral changes necessitated by COVID-19, with important implications for the grieving process., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The COVID-19 pandemic disrupted many areas of life, including culturally accepted practices at end-of-life care, funeral rites, and access to social, community, and professional support. This survey investigated the mental health outcomes of Australians bereaved during this time to determine how these factors might have impacted bereavement outcomes., Methods: An online survey indexing pandemic and bereavement experiences, levels of grief, depression, anxiety, and health, work, and social impairment. Latent class analysis (LCA) was used to identify groups of individuals who shared similar symptom patterns. Multinomial regressions identified pandemic-related, loss-related, and sociodemographic correlates of class membership., Results: 1911 Australian adults completed the survey. The LCA identified four classes: low symptoms (46.8%), grief (17.3%), depression/anxiety (17.7%), and grief/depression/anxiety (18.2%). The latter group reported the highest levels of health, work, and social impairment. The death of a child or partner and an inability to care for the deceased due to COVID-19 public health measures were correlated with grief symptoms (with or without depression and anxiety). Preparedness for the person's death and levels of pandemic-related loneliness and social isolation differentiated all four classes. Unemployment was associated with depression/anxiety (with or without grief)., Conclusions: COVID-19 had profound impacts for the way we lived and died, with effects that are likely to ricochet through society into the foreseeable future. These lessons learned must inform policymakers and healthcare professionals to improve bereavement care and ensure preparedness during and following future predicted pandemics to prevent negative impacts.

Background: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends., Aim: To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home., Design: A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin., Setting/participants: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home., Results: The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different., Conclusions: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines., Methods: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview., Results: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses., Conclusion: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: There has been an emerging trend of adopting a death doula, a non-medical advocate and guide for people at the end of life and their families. While there has been growing empirical research regarding the work of death doulas, no studies have been undertaken with the families who have engaged them., Objectives: To understand the experiences of families who used a death doula in terms of what they did for the patient and family; to understand the benefits and drawbacks of using a death doula; and to use family insight to determine cultural shifts towards death and dying, and what the death doula phenomenon tells us around our attitudes towards death and dying., Methods: We recruited and interviewed 10 bereaved family members to learn about their experiences using a death doula. This qualitative research took an interpretive phenomenological approach, and thematic analysis was used to analyse the data., Results: The most valuable attribute the families gained from death doulas was an increase in death literacy resulting in personal empowerment. Empowerment enabled positive end-of-life experiences for the family and personalised deaths for the patient. A novel finding was that the connections and knowledge shared between the death doula and family had a resonant effect, resulting in families being more comfortable with death and keen to share their knowledge with others. Therefore, family engagement of a death doula led to an increase in community awareness around death and dying., Conclusion: Family members' experience with a death doula was overwhelmingly positive, empowering them practically and emotionally to deliver the best end-of-life care. Empathy and sharing of knowledge by death doulas were valued by families and resulted in an increase in death literacy which provided families with opportunities to 'pay it forward'. Furthermore, the relationships formed between doulas and families have the potential for a lasting, resonant effect., Competing Interests: The authors declare that there is no conflict of interest., (© The Author(s), 2023.)

Background: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous medicines. Nurses require education about how to teach informal carers to use these resources., Aim: To evaluate the effectiveness and relevance of an online education programme for registered nurses (RNs) about using the caring@home resources., Methods: Nurses must complete an online survey prior to the commencement of the online education programme and again upon completion to assess their change in skills, knowledge, confidence and attitudes of the RNs. T-tests were conducted to compare average pre- and post-education scores., Findings: The knowledge, skills and confidence of RNs to teach carers improved significantly following the completion of an education programme. There was a significant change in attitude, meaning that the perceived benefit of teaching informal carers to give subcutaneous medicines improved. All reported they would use the resources in their clinical practice., Conclusion: The online education programme is an effective and cost-efficient strategy to educate nurses to support informal carers to help manage breakthrough symptoms using subcutaneous medicines., Competing Interests: Statement of interest: None

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.

Background: The Australian population is aging, and the proportion of older Australians will continue to grow over the coming decades. However, there is a lack of research published on the specific roles and responsibilities of allied health professionals (AHPs) providing palliative care within an aged care context. Understanding the roles and needs of AHPs providing care during the last months of life in the community and aged care facilities could contribute to workforce planning, targeted information and improved care., Methods: In total, 108 eSurveys were collected between November 2019 to May 2020 from three allied health professions working in government-funded aged care; the majority of these being in residential aged care. Descriptive data are reported on the provision of care in key palliative care domains, care settings and practice activity., Results: Nearly all respondents reported they had worked with older Australians who had palliative care needs. However, over one-third of respondents reported low levels of confidence in supporting clients or residents with palliative care needs. The majority indicated they would benefit from additional education and training and support in palliative care., Conclusions: This study investigated the role of the allied health workforce in contributing to the care of older Australians at the end of life. It has also demonstrated that there are gaps in practice activity and work role that must be addressed to ensure this workforce can support older people with palliative care needs in receipt of aged care services.

Background: Most people living with a terminal illness and approaching death will need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional, and practical caring supports. A significant portion of these carers can feel overwhelmed, isolated and experience psychological and/or financial distress. Carers can have unmet information needs and information needs can change across the caring period., Methods: Guided by an Australian National Reference Group, this project undertook a multiphase set of activities to enable the development of an online carer resource. These activities included a literature review of key issues and considerations for family carers supporting someone with a terminal illness, a scoping scan of existing online resources, and interviews and focus groups with eighteen carers to understand their needs and context of caring. This information formed the basis for potential digital content. A web project team was established to create the information architecture and content pathways. User testing survey and usability assessment of the CarerHelp Website was undertaken to assess/optimise functionality prior to release. An evaluation process was also devised., Results: The literature review identified carer needs for practical and psychological support along with better education and strategies to improve communication. The scoping scan of available online resources suggested that while information available to carers is plentiful, much of that which is provided is general, disparately located, inadequately detailed, and disease specific. The eighteen carers who were interviewed highlighted the need for helpful information on: services, symptom management, relationships, preparation for death, managing the emotional and psychological burden that often accompanies caring, and support during bereavement. User testing and usability assessment of the prototype resource led to changes to enhance the user experience and effectiveness of navigation. It also highlighted a lack of awareness of existing resources and the needs of marketing and communication to address this problem., Conclusions: The project led to the development of an open access online resource, CarerHelp ( www.carerhelp.com.au ), for use by carers and families caring for a person who has palliative care needs. The web metrics demonstrate substantial use of the resources., (© 2023. The Author(s).)

Background: The role of death doula has emerged in recent years, arguably as a result of overwhelming demands on carers, healthcare professionals and service providers in end-of-life care. Death doulas work independently without governing oversight and enact the role in various ways. The main driver of this evolving role is the organisations that train them. The aim of this study was to examine death doula training organisations' views with regard to DD business models, incorporating the death doula role into other existing models of care, and role enactment., Methods: An electronic survey was administered to 15 death doula training organisations in 5 countries asking additionally that they disseminate the survey. Responses were received from 13 organisations, based in Australia (n = 4), the US (n = 4), Canada (n = 2), the UK (n = 1), Sweden (n = 1) and New Zealand (n = 1). This paper provides the qualitative findings from four open-text questions posed within the survey related to models of care., Results: Qualitative data analysis was inductive, themes were determined in relation to: (1) standardised business model for death doulas, (2) death doulas incorporated into existing models of care or existing funding options, (3) death doulas who volunteer their services rather than charge money, and (4) role specialisation such as has occurred with birth doulas., Conclusions: The death doula role has the potential to be formally recognised in the future under national registration schemes, accompanied by death doula training required via certification. Until such time the death doula role will continue to evolve much as the birth doula role has, organically and unstructured. How and if death doulas are incorporated into existing models of health or social care remains to be seen as the organisations that train them push for independence, flexibility and fiscal independence., (© 2023. The Author(s).)

User-based evaluation by end users is an essential step in designing useful interfaces. Inspection methods can offer an alternate approach when end-user recruitment is problematic. A Learning Designers' usability scholarship could offer usability evaluation expertise adjunct to multidisciplinary teams in academic settings. The feasibility of Learning Designers as 'expert evaluators' is assessed within this study. Two groups, healthcare professionals and Learning Designers, applied a hybrid evaluation method to generate usability feedback from a palliative care toolkit prototype. Expert data were compared to end-user errors detected from usability testing. Interface errors were categorised, meta-aggregated and severity calculated. The analysis found that reviewers detected N = 333 errors, with N = 167 uniquely occurring within the interface. Learning Designers identified errors at greater frequencies (60.66% total interface errors, mean (M) = 28.86 per expert) than other evaluator groups (healthcare professionals 23.12%, M = 19.25 and end users 16.22%, M = 9.0). Patterns in severity and error types were also observed between reviewer groups. The findings suggest that Learning Designers are skilled in detecting interface errors, which benefits developers assessing usability when access to end users is limited. Whilst not offering rich narrative feedback generated by user-based evaluations, Learning Designers complement healthcare professionals' content-specific knowledge as a 'composite expert reviewer' with the ability to generate meaningful feedback to shape digital health interfaces.

The study aimed to describe views on Voluntary Assisted Dying (VAD), gleaned through qualitative analysis of participant responses to a set activity, run during the 2018 'Dying2Learn' Massive Open Online Course (MOOC). Data from 508 participants, most of whom identified as health professionals, were analysed using thematic content analysis, and themes generated. A large proportion of participants discussed their personal views related to VAD, specifically around choice, control, dignity, palliative care and dying at home, medical intervention, societal factors, the impact on those left behind, laws and regulations, dying 'naturally', advance care directives, and being in pain. In this study, participants had many different views on the act itself, often divisive, but also with common concepts such as respecting the choices and decisions of others.

The Antia-Buch flap is a popular reconstructive method for full-thickness ear defects involving the helical rim. However, scaphal or conchal resection is often required to prevent ear distortion. Noel et al described a modified technique to the Antia-Buch flap, which includes an incision in the temporal scalp and complete detachment of the preauricular helical root to increase mobility of the flap. Since then, no studies have reported on the use of this modification. We report our experience in implementing Noel et al's modification of the Antia-Buch flap for helical rim defects., Methods: The modified technique differs from the original Antia-Buch flap by completely detaching the root of the helix and adding a vertical incision to the temporal scalp to increase mobility of the flap. No scaphal resection is necessary. After complete elevation of the flaps, the flaps are advanced and inset toward each other followed by closure., Results: In our practice, 10 patients have been treated with Noel et al's modification to the Antia-Buch flap. In each of these patients, acceptable reconstruction of the helical rim was able to be achieved. All the patients were pleased with their reconstructive outcome and ear anatomy was able to be successfully maintained., Conclusions: The modified Antia-Buch flap has shown to be an excellent method for large, helical rim defects, creating versatility by adding the temporal scalp incision. Our outcomes with Noel et al's modification to the original Antia-Buch flap support this method as a versatile technique for wide full-thickness helical rim defects., Competing Interests: Disclosure: The authors have no financial interest to declare in relation to the content of this article., (Copyright © 2023 The Authors. Published by Wolters Kluwer Health, Inc. on behalf of The American Society of Plastic Surgeons.)

Context: Death Doulas are working globally to provide non-medical end-of-life care. They have different training experiences and views on the role and whether it should be standardised., Objective: To seek the views of organisations responsible for training Death Doulas in order to determine what the drivers are behind this emerging role., Methods: We conducted an online survey with Death Doula training organisations in five countries utilising both a targeted and snowball approach. Qualitative analysis was undertaken with themes pre-determined (apriori) due to the nature of the survey categories., Results: In total, representatives from 13 organisations in Australia, New Zealand, Sweden, Canada, United Kingdom, and United States responded. The organisations had provided training for 0 to 20 years, with one just starting and another training birth doulas and now expanding. Owners and trainers hold an array of qualifications such as academic, medical, non-medical, and life experience. Curricula have usually been developed locally, and not always included pedagogical consideration, a strategic business model, nor mapping processes such as gap analysis. The organisations are run similarly, and curricula have several consistent topics but with distinctly different approaches. Trainers' views are also mixed about the way to proceed with registration of the Death Doula role., Conclusion: The contrasting views of training organisations explain much of the ambiguity of Death Doulas themselves regarding standardisation of registration, education and role enactment. If heading towards the ultimate goal of professionalisation of the role then a challenging path lies ahead with little in the way of agreement in what this would require., Competing Interests: Competing interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2022.)

Objectives: This scoping review identifies and details the scope of practice of health professionals who provide palliative care within the primary health setting in Australia. Methods: A scoping review approach was conducted on the Cinahl (Ebsco), Scopus, Medline (Ovid) and PubMed databases to extract articles from 1 December 2015 to 1 December 2020. Broad text words and MeSH headings were used with relevance to palliative care, general practice, primary health, and community setting. Extracted journal articles were limited to those based on the Australian population or Australian health system. Results: Eighty-four papers met the inclusion criteria and were included in the review. The review identified the following health professional roles within the Primary Health Care setting undertaking palliative care: General Practitioner, Nurse, Pharmacist, Paramedics, Carers, and Allied Health professionals. Conclusion: This review offers a first understanding of the individual health professional roles and multidisciplinary team approach to actively providing palliative care within the Primary Health Care setting in Australia., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 van Gaans, Erny-Albrecht and Tieman.)

Background: The impact of Australia's diverse population on the aged care sector has been acknowledged, with the Royal Commission into Aged Care Quality and Safetyfindings providing evidence of the importance of population diversity for consumer-directed and person-centred care. Similarly, the Aged Care Quality Standards and Aged Care Diversity Framework acknowledge the diversity of Australia's ageing population and potential implications for equitable access to care and the ensuing importance of culturally appropriate and culturally safe care. This paper reports on the development of informational web pages and utilisation findings for use by the aged care workforce supporting diverse populations., Methods: Content was created for the End of Life Directions for Aged Care website, based on rapid review findings relating to barriers and limitations for people accessing equitable care in the aged care and palliative care sectors., Results: Website pages containing embedded links to useful content and resources for health professionals and care workers who work with older diverse adults are shown to be well received among users., Conclusions: As Australia's future population will age with increasing diversity markers, with implications for aged care and palliative care service provision, workforce access to up-to-date, relevant and evidence-informed information on best practice non-clinical support for individuals from diverse backgrounds towards the end of life promotes a person-centred care approach. Access data shows that the website content is being utilised increasingly over time and suggests that it is filling a gap in comprehensive and accessible end of life resources that have been missing from the Australian aged care and palliative care workforce.

In the United States, the top 1% and top 5% of health care spenders account for 23% and 50% of total health care spending, respectively. These high spenders have been coined the term super utilizers (SU). The aim of this study was to identify the characteristics associated with these patients to aid in developing public health interventions aimed at transitioning patients out of the SU category and thus ultimately helping to control health care costs. The authors utilized the Utah All-Payer Claims Database and Utah Population Database from 2013 to 2015 to identify demographics, comorbid conditions, health care utilization, and cost characteristics of persistent super utilizers (PSU) (≥3 hospitalizations per year for 3 years) of health care compared with persistent nonsuper utilizers (PNSU) (<3 hospitalizations per year for 3 years). Multivariable logistic regression was utilized to identify the characteristics associated with PSU versus PNSU. Higher outpatient/Emergency Department/noninpatient (eg, visits with imaging and Centers for Medicare & Medicaid Services preventive visits) health care utilization and spending, and prevalence of comorbid disease and psychosocial conditions were associated with PSU. In multivariable analysis, factors such as heart disease, chronic kidney disease (CKD), diabetes, alcohol abuse, and depression were statistically significantly associated with higher odds of PSU, with the most noteworthy being CKD (odds ratio [OR] 6.85, 95% confidence interval [95% CI] 5.84-8.02; P  < 0.001), alcohol abuse (OR 5.90, 95% CI 4.49-7.69; P  < 0.001), and heart diseases (OR 4.41, 95% CI 3.74-5.18; P  < 0.001). The annual health care cost of a PSU is about 11.5 times greater than a PNSU ($54,776 vs. $4801; P  < 0.001).

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., (© 2022. The Author(s).)

Background: Family carers are vital in the management and delivery of home-based palliative care. Decision-makers need to know what the most commonly expressed unmet needs of family carers are to target available support services., Aim: To identify the most commonly expressed needs of family carers of people with an advanced disease, assess the quality of current evidence, and set an agenda for future research and clinical practice., Design: A systematic review of reviews, prospectively registered on PROSPERO. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklist for systematic reviews and research syntheses., Data Sources: MEDLINE, Embase, Emcare, PsycINFO, CINAHL, Informit and Cochrane Library were searched for reviews about the needs of carers looking after patients with advanced disease from 2010 to 2020., Results: Findings from 21 reviews identified emotional support, disease-specific knowledge, carer role responsibilities, self-care and general practical support as the most commonly expressed needs expressed by family carers. Additionally, access to professional services, formal education opportunities and communication with health professionals were identified as caregivers' preferred ways of having these needs met. Extraction of carer-specific needs was challenging at times as results were often combined with patient results in reviews., Conclusion: Practical difficulties exist in effectively resourcing services to meet the needs of family carers. Information regarding the most commonly expressed needs shared by caregivers and their preferred delivery source can provide an opportunity to focus available support services to achieve the highest possible impact for carers of patients with advanced disease., Prospero Registration Number: CRD42018088678., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Primary care settings are ideal for initiating advance care planning (ACP) conversations and assessing palliative and supportive care needs. However, time constraints and a lack of confidence to sensitively and efficiently initiate such discussions are noted barriers. The Advance Project implemented a national multicomponent training package to support Australian general practice nurses (GPNs) to work with GPs to initiate ACP and palliative care conversations in their practice. This paper reports on semistructured interviews conducted with 20 GPNs to explore barriers and facilitators to implementing the Advance Project model. Participants identified a range of factors that affected implementation, including lack of time, limited support from colleagues, lack of knowledge about systems and funding processes in general practice and a need for better alignment of the Advance Project resources and practices with general practice information management platforms. Barriers related to professional roles, particularly the lack of clarity and/or limitations in the scope of practice of GPNs, highlighted the importance of defining and supporting the roles that different primary health practice staff could play to support implementation of the model. The findings underline the need for complementary training in the Advance Project model for GPs and practice managers to enable a team-based approach to implementation.

Objectives: Initiation of advance care planning (ACP) and palliative care (PC) assessments in general practice is key to quality end-of-life care. The Advance Project promotes a team-based approach to initiating ACP and PC needs assessment in general practices through training, resources and practical support for implementation from local primary health networks (PHNs). This paper aims to understand: (1) general practice participants' experiences of undertaking Advance Project training and implementing the Advance Project resources in their practices; (2) barriers and facilitators to implementation of Advance Project resources; and (3) PHN staff experiences of supporting general practices through training and practical support for implementation of the Advance Project resources., Design: Qualitative study using semistructured interviews and thematic analysis., Setting: Twenty-one general practices and four PHNs from three Australian states were recruited between June 2019 and May 2020., Participants: General practitioners (GPs), general practice nurses, practice managers (PMs) and PHN staff., Results: 45 participants comprising 13 GPs, 13 general practice nurses, 9 PMs, 3 allied health staff and 7 PHN staff were interviewed. The general practice participants generally agreed that the Advance Project training/resources led to changes in their own behaviour and increased their awareness of the importance of ACP/PC discussion with their patients. Participants reported the following benefits for patients: increased awareness of ACP; engagement with families/carers and peace of mind. Key facilitators for successful implementation were a team-based approach, the role of the PHN, the role of practice champions, training facilitators' ability to influence peers and facilitate change, and mentoring support. Barriers to implementation included issues related to workplace culture, cost, time/workload, patients and health system., Conclusion: Findings suggest that the Advance Project approach facilitated successful implementation of ACP and PC needs assessment into usual care in general practices that encouraged teamwork among GPs and general practice nurses. The ability of the practice to make the best use of practical support and guidance available to them through their local PHN both before and during implementation was a key factor in integration of Advance Project resources into routine practice., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: We undertook a qualitative study to examine and compare the experience of ethical principles by telehealth practitioners and patients in relation to service delivery theory. The study was conducted prior to and during the recent global increase in the use of telehealth services due to the COVID-19 pandemic., Methods: We conducted semi-structured interviews with 20 telehealth practitioners and patients using constructionist grounded theory methods to collect and analyse data. Twenty-five axial coded data categories were then unified and aligned through selective coding with the Beauchamp and Childress (2013) framework of biomedical ethics. The groups were then compared., Results: Thirteen categories aligned to the ethical framework were identified for practitioners and 12 for patients. Variance existed between the groups. Practitioner results were non-maleficence 4/13 or (31%), beneficence 4/13 (31%), professional-patient relationships 3/12 (22%), autonomy 1/13 (8%) and justice 1/13 (8%). Patient data results were non-maleficence 4/12 (33%), professional-patient relationships 3/12 (33%), autonomy 2/12 (18%), beneficence 1/12 (8%) and justice 1/12 (8%)., Conclusions: Ethical principles are experienced differently between telehealth practitioners and patients. These differences can impact the quality and safety of care. Practitioners feel telehealth provides better care overall than patients do. Patients felt telehealth may force a greater share of costs and burdens onto them and reduce equity. Both patients and practitioners felt telehealth can be more harmful than face-to-face service delivery when it creates new or increased risk of harms. Building sufficient trust and mutual understanding are equally important to patients as privacy and confidentiality., Competing Interests: Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2022.)

Carers of people with a life-limiting illness report unmet information, practical, and emotional support needs, and are often unaware of services available to help improve preparedness, wellbeing, and reduce strain. CarerHelp is the first e-health toolkit that focuses on the information and support needs of carers of people with a life-limiting illness at the end-of-life, using a pathway approach. This study investigated the usefulness of CarerHelp, from the perspective of health professionals who care for these people. Through a 10-min online survey, health professionals provided feedback about their user experience and perceived usefulness of the website. Their expert opinion was sought to ascertain whether CarerHelp could increase carers' preparedness and confidence to support the person for whom they are caring and thereby improve carers' own psychological wellbeing. Health professionals also evaluated whether CarerHelp adequately raised awareness of support services available. CarerHelp was perceived as a useful resource for increasing preparedness for the caring role, including physical tasks and emotional support. Health professionals reported that CarerHelp would increase carers' knowledge of services, confidence to care and ability for self-care. Health professionals endorsed CarerHelp as a useful information source, guide for support, and would promote CarerHelp to clients and their families.

Background: While the need for digital health capability and technological innovation in palliative care services is growing rapidly, relatively little is known about the current uptake and views of individual palliative care practitioners. This study aims to explore palliative care practitioners' current use of and perspectives on digital health innovation in palliative care., Methods: A descriptive cross-sectional survey with a web-based questionnaire was used. Participants were multidisciplinary palliative care practitioners in Australia., Results: Surveys were returned by 170 medical, nursing, and allied health practitioners working in palliative care. Most respondents reported using a variety of digital health technology associated with clinical information systems, mobile devices, SMS text messaging, teleconferencing, and Wi-Fi. These technologies were used for the purpose of communicating with other health professionals, accessing web-based or mobile health palliative care resources, collecting or managing patient data, and providing information or education. However, few reported electronic access to patients' advance care planning documentation or could update these data. Respondents were moderately confident in their ability to use digital health, held positive beliefs that palliative care could be enhanced through digital health, and were generally supportive of ongoing innovation through digitally-enable models of care. Palliative care providers would most like to see digital health innovations in the areas of client health records, telehealth, and personal health tracking., Conclusion: This is the first national study of digital health in Australian palliative care providers. It contributes new knowledge in this important area of palliative care practice to guide policy and education, whilst informing future directions for research., (© 2021. The Author(s).)

Access to evidence and practice knowledge precedes use, but availability does not guarantee reach and uptake by intended audiences. The CareSearch project provides online palliative care evidence and information to support health and aged care professionals as well as patients, carers and families to make informed decisions about care at the end of life. Already established in the palliative care sector, CareSearch commenced planning to extend its reach, and ensure website use is maximised for different audiences. This paper reports on the development of the Engagement Framework which will be used to guide and deliver an Engagement Project which will actively seek feedback and insights from intended users in a structured process. The process for developing the Engagement Framework commenced with a literature review of approaches used in knowledge translation, implementation science, and social marketing. The Engagement Framework comprising eight steps was then developed. The Engagement Framework outlines the series of tasks to be undertaken by team members when working with three target groups (Aged Care; Allied Health; and Patients, Carers and Families). A process/formative evaluation collecting data using qualitative methods is also described for use in the subsequent Engagement Project. The evaluation will explore the experiences of project participants as well as staff implementing the engagement activities. The three target groups will enable a cross-case comparison of the strengths and weaknesses of the approach. Planning, implementing and evaluating engagement with intended audiences, offers one mechanism to identify ways to increase interaction and integration with knowledge users.

Objectives: To consider death doulas in relation to compassionate communities, role delineation and regulation, and end-of-life care delivery., Study Design: A narrative describing the emerging role of death doula in the increasingly complex end-of-life space., Methods: A discussion of death doula in end-of-life care., Results: Compassionate communities calls for the mobilisation of informal care around the dying and their families. Formal health services as well, including palliative care, are already providing care as are death doulas. The death doula role is not yet fully articulated and has layers of complexity associated with a lack of formalised training and no registration., Conclusions: There is much to consider in the informal caregiving space at the end of life. Conversations are required for coherent, coordinated care delivery in what has become a complex arena. There are those who are in paid positions, volunteers, those who are negotiating fees, as well as role overlap and role blurring., (Copyright © 2021 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.)

As the population ages, the number of older populations globally requiring palliative care is rapidly growing, requiring services of multidisciplinary teams-including community pharmacists. The aim of this study is to describe the community pharmacists' perceived role in providing services to community dwelling older Australians receiving palliative care. Utilising an eight-domain End of Life Directions for Aged Care (ELDAC) care model, a national cross-sectional questionnaire was designed and undertaken online with Australian community pharmacists. Respondents were asked questions relating to socio-demographic characteristics, practice characteristics, and scope of services provided. Of the 62 pharmacists who responded to the questionnaire, 51 were included in the final data analysis and reporting. Pharmacists working in dispensing roles made up about half of the respondents, while the remainder worked in settings such as general practice, residential aged care, or providing medication review services. Pharmacists can identify patients with indicators of poor life expectancy and mostly work with older Australians daily. Dispensing and non-dispensing pharmacists offer a range of services that complement each other. Organisations caring for the aged should consider the role of the pharmacist, in caring for people with palliative care needs, along with their carers.

Background: As the use of technology to deliver health services is increasing rapidly and has further intensified during the COVID-19 pandemic, these initiatives may fail if ethical impacts are not fully identified and acted upon by practitioners. Ignoring the ethical impacts of information and communication technology health service delivery creates an unintended risk for patients and can lead to reduced effectiveness, noncompliance, and harm, undermining the best intentions of governments and clinicians., Objective: Our aim was to explore how ethical considerations or impacts may be different, greater, or more variable in information and communication technology methods versus face-to-face health care delivery models, and how they may be applied in practice., Methods: We undertook a systemic literature review to provide a critical overview of existing research into the incorporation of ethical principles into telehealth practice. Six databases were searched between March 2016 to May 2016 and again in December 2020 to provide the benefit of currency. A combination of broad terms ("ethics," "ethical," "health," and "care") with the restrictive terms of "telehealth" and "telemedicine" was used in keyword searches. Thematic analysis and synthesis of each paper was conducted, aligned to the framework developed by Beauchamp and Childress., Results: From the 49 papers reviewed, authors identified or discussed the following ethical principles in relation to telehealth practice: autonomy (69% of authors, 34/49), professional-patient relationship (53% of authors, 26/49), nonmaleficence (41% of authors, 20/49), beneficence (39%, of authors, 19/49), and justice (39% of authors, 19/49)., Conclusions: Although a small number of studies identified ethical issues associated with telehealth practice and discussed their potential impact on service quality and effectiveness, there is limited research on how ethical principles are incorporated into clinical practice. Several studies proposed frameworks, codes of conduct, or guidelines, but there was little discussion or evidence of how these recommendations are being used to improve ethical telehealth practice., (©Amanda Jane Keenan, George Tsourtos, Jennifer Tieman. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 30.03.2021.)

Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed., (© 2020 John Wiley & Sons Ltd.)

Understanding public attitudes towards death is needed to inform health policies to foster community death awareness and preparedness. Linguistic sentiment analysis of how people describe their feelings about death can add to knowledge gained from traditional self-reports. This study provided the first description of emotive attitudes expressed towards death utilising textual sentiment analysis for the dimensions of valence, arousal and dominance. A linguistic lexicon of sentiment norms was applied to activities conducted in an online course for the general-public designed to generate discussion about death. We analysed the sentiment of words people chose to describe feelings about death, for themselves, for perceptions of the feelings of 'others', and for longitudinal changes over the time-period of exposure to a course about death (n = 1491). The results demonstrated that sadness pervades affective responses to death, and that inevitability, peace, and fear were also frequent reactions. However, words chosen to represent perceptions of others' feelings towards death suggested that participants perceived others as feeling more negative about death than they do themselves. Analysis of valence, arousal and dominance dimensions of sentiment pre-to-post course participation demonstrated that participants chose significantly happier (more positive) valence words, less arousing (calmer) words, and more dominant (in-control) words to express their feelings about death by the course end. This suggests that the course may have been helpful in participants becoming more emotionally accepting in their feelings and attitude towards death. Furthermore, the change over time appeared greater for younger participants, who showed more increase in the dominance (power/control) and pleasantness (valence) in words chosen at course completion. Sentiment analysis of words to describe death usefully extended our understanding of community death attitudes and emotions. Future application of sentiment analysis to other related areas of health policy interest such as attitudes towards Advance Care Planning and palliative care may prove fruitful., Competing Interests: The authors have declared that no competing interests exist.

Globally, the number of older people requiring appropriate and safe management of medicines is growing. This review aimed to identify the roles and responsibilities of pharmacists supporting older people living in a community setting with their palliative care needs and to synthesise key themes emerging from the data, as well as any gaps in knowledge. The literature search included Medline (Ovid), Scopus, and Cinahl (Ebsco) databases. An English language limit was applied. The search included all international articles and any date of publication. Data were synthesised utilizing a systematic text condensation technique and presented according to Theme, Domain, and Meaning Units. Fourteen studies met the inclusion criteria. Selected papers predominantly focused on care provided by the pharmacists supporting people receiving residential aged care services. Clinical review, supply of medicines, and clinical governance were identified as key pharmacist roles. Pharmacists' communication skills, personal behavioural approach, and positive attitude emerged as supportive characteristics for effective person-centered care. Minimal, or no information, were available related to pharmacists located in general medical practices and in Aboriginal health services sector, respectively. The multifaceted role of pharmacists presents an opportunity to provide comprehensive health care for older populations at the end of their life.

Providing quality care for those dying in hospital is challenging for health professionals who receive little training in this. "End of Life Essentials" (EOLE) was developed to address gaps in health professionals' knowledge, skills and confidence in end-of-life care via the provision of online learning modules and practice resources. This study aimed to determine whether respondents could describe clinical practice change as a result of module completion. Deidentified data were collected between October and November 2018 from learners registered for the online learning modules. Both quantitative and qualitative data were extracted and analysed. The survey design and conduct were reviewed, and ethical approval was obtained. Although the response rate was very low, results from n = 122 learners show improvements in knowledge, skills, awareness and confidence as a result of the undertaking of the learning modules. Two thirds self-reported practice changes (71%, n = 59) following the education, with "communication" cited most commonly ( n = 19). The findings suggest that the EOLE education modules can help to improve end-of-life care by increasing health professionals' awareness of good practice as well as their knowledge, skills and confidence. Online learning has also been reinforced as an appropriate forum for end-of-life education. Following education, implementing what has been learned occurs more easily at a personal level rather than at a team and organisational level. Barriers to and enablers of clinical practice change in hospital are described, including the fact that the organisation may not be responsive to changes or have the relevant resources to support change.

A Massive Open Online Course, Dying2Learn, was designed to foster community death conversations and strengthen community awareness of palliative care and death as a normal process. This exploratory study used a pre-post prospective design to determine if participation in Dying2Learn and exposure to online conversations about death and dying resulted in any significant influence on death competence in 134 participants who completed the Coping-with-Death-Scale both at the beginning and end of the course in 2016. Death competence refers to a range of attitudes and capabilities people have for dealing with death. Results at the end of the course indicated that engagement in Dying2Learn led to significant improvements in death competence scores over time (medium-to-large effect size). The positive impact was greater for those who completed more of the course, and effectiveness did not depend on sociodemographic characteristics. In conclusion, this study found that an online learning platform in the form of a Massive Open Online Course could engage community members in meaningful social discussion about death and dying, and that exposure to these conversations was beneficial for all participants regardless of previous exposure to death. Further exploration is required to determine whether this change in death competence will have an impact on participant's behavior in the community regarding death conversations and preparedness.

'Death Doulas' have emerged as a relatively new role supporting dying people and their family members; however there is a lack of clarity around how the role is enacted, and around the death doula role within health and social care systems. This study aimed to explore the ambiguity of the role of death doulas in end-of-life care including the skills, training and experience of death doulas; how the role is communicated to the community; and the relationships to palliative care providers and other health professionals. People identifying as death doulas were invited to participate in an online survey between April and June 2018. Ethical approval was obtained. A descriptive cross-sectional study was conducted, and purposive sampling was used to survey death doulas registered with death doula training organisations, newsletters and email distribution lists. Questions were based on the researchers' previous findings about the role. One hundred and ninety completed or partially completed surveys were received. Results showed diversity within, and some commonalities across the sample in terms of: training, experience and skills; Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on health care professionals (including palliative care) at the end-of-life. They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don't have responsibility for. However, the roles and scope of practice of death doulas is not clear-cut even within their cohort, which can then make it hard for patients and families when choosing a death doula, especially as a lack of regulation and standardised training means that doulas are working without oversight, and often in isolation., (© 2019 John Wiley & Sons Ltd.)

Background: CaseSearch 'My Learning' e-learning modules were designed to remind clinicians and practitioners about the role of evidence in practice and demonstrate how to find relevant evidence to make a difference in clinical care. This study aims to describe the role of the modules and their uptake, and determine whether the modules influenced the learners' palliative care practice and whether the modules were easy to use., Method: Two sets of questions were designed to capture data to evaluate the modules., Findings: The modules supported the awareness and use of evidence by health professionals. The modules contribute to ongoing professional development for practitioners and can improve palliative care practice., Conclusion: It is possible to collect meaningful data that contributes to understanding who uses e-learning resources and how useful healthcare professionals find them.

Objective: Understanding factors that are associated with more adaptive death attitudes and competencies can inspire future health-promoting palliative care strategies and inform approaches to training and development for health professionals. The potential importance of meaning, purpose, quality, and values in life for promoting adaptive death attitudes has been highlighted, but there is limited research in this area, particularly in relation to death competence. The purpose of this cross-sectional study was to develop an understanding of demographic and life-related factors associated with perceived death competence, such as meaning in life and quality of life., Method: During the course enrollment period of a Massive-Online-Open-Course about death and dying, 277 participants completed questionnaires on death competence, meaning in life, quality of life, and sociodemographic background., Result: Findings indicated that greater presence of meaning in life, quality of life, age, death experience, and carer experience were each statistically significant unique predictors of death competence scores. Life-related variables were more strongly associated with death competence than demographic variables. Bereavement experience and experience caring for the dying was associated with greater death competence, but there were no differences on death competence between health professionals and the general community. Above all other factors, the presence of meaning in life was the strongest predictor of higher perceived competence in coping with death., Significance of Results: The findings demonstrate important interconnections between our attitudes about life and death. Knowledge of factors associated with poorer death competence may help identify those at risk of greater distress when facing death, and might prove useful additions to bereavement risk assessments. Understanding factors associated with greater death competence in health professionals and volunteers may help predict or prevent burnout and compassion fatigue, and help identify who would benefit from additional training and support. Future longitudinal studies including both health professionals and the general community are needed to determine the effect adaptive attitudes toward meaning in life can potentially have on bolstering subsequent adaptive coping and competence regarding death and dying.

Background: Complex social and ethical debates about voluntary assisted dying (euthanasia), palliative care, and advance care planning are presently being worked through in many developed countries, and the policy implications of these discussions for palliative care are potentially very significant. However, community attitudes to death and dying are complex, multilayered, and contain many mixed messages., Methods: Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn. This provided an opportunity to explore societal and personal attitudes to wishes and beliefs around death and dying. For one activity in the MOOC, participants responded to a question asking them about "the best way to go"., Results: Responses were subjected to thematic analysis, during which they were coded for conceptual categories. This analysis showed how acceptance of death as a natural and normal process, and as a shared event that affects a whole social network, may nonetheless be accompanied by deep reluctance to address the physical process of dying (i.e., "avoidant acceptance")., Conclusions: Our findings highlighted a desire for choice and control in relation to dying, which is a common element in discussions of both advance care planning and palliative care. This same focus may contribute to a perception that voluntary assisted dying/euthanasia is a necessary strategy for ensuring that people have control over their dying process. We discuss the paradox of individuals wanting to have control whilst preferring not to know that they are dying.

Background: Physical activity in palliative care patients is closely linked to independence, function, carer burden, prognosis, and quality of life. Changes in physical activity can also be related to service provision needs, including requirements for support and prognosis. However, the objective measurement of physical activity is challenging, with options, including self-report, invasive and intensive measures such as calorimetry, or newer options such as pedometers and accelerometers. This latter option is also becoming more viable with the advent of consumer technology driven by the health and exercise industry. Objective: In this article, we highlight our experiences of activity monitoring in palliative care patients as part of telehealth trial. We also highlight the strengths and limitations of activity monitoring in the palliative care population and potential applications. Conclusions: Although the advent of consumer technology for activity measurement makes their use seem attractive in clinical settings for palliative care patients, there are a number of issues that must be considered, in particular the reason for the activity monitoring and associated limitations in the technology.

Purpose: The scope of hospice or palliative care has expanded since its inception, which has significant ramifications for the AH workforce. This study sought to elicit allied health (AH) clinicians' understanding and views about palliative care and its relevance to their clinical practice and to identify their educational needs. Results from analysis of free text survey responses to a single open-ended question from a larger survey are presented., Methods: An online survey was distributed to AH clinicians via email lists for the CareSearch Allied Health Hub, Allied Health Professions Australia, and other groups. Descriptive statistics and content analysis of free text responses were used to analyse the data., Results: A total of 217 AH clinicians responded to an email survey and 187 useable responses were analysed. Four themes were identified: 1) palliative care employs a client-centred model of care, 2) acknowledgement of living whilst dying, 3) interdisciplinary palliative care interventions provide active care in a range of domains, and 4) characteristics of palliative care teams and settings., Conclusion: AH clinicians plan an active role in physical, social, and psycho-spiritual care of palliative care patients and caregivers. Burgeoning numbers of palliative care patients in nonspecialist palliative care settings require AH clinicians to develop skills and competencies to work with people who have advanced disease.

Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been working with women during pregnancy and after birth for many years, and we are now seeing a new role, that of a Death Doula emerging in the end-of-life care space. How Death Doulas work within health and social care systems is not understood and we conducted a systematic review to explore the published literature to explore the role and potential implications for models of care delivery. Following the PRISMA recommendations, we searched the literature in January 2018 via bibliographic databases and the grey literature without search date parameters to capture all published literature. We looked for articles that describe the role/work of a death doula or a death midwife in the context of end-of-life care, or death and dying. Our search retrieved 162 unique records of which five papers were included. We analysed the papers in relation to relationship to health service, funding source, number and demand for services, training, licensing and ongoing support, and tasks undertaken. Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of "an eldest daughter" or to a role that has similarities to specialist palliative care nurses. Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight., (© 2018 John Wiley & Sons Ltd.)

Few previous studies have formally examined people's wishes regarding what they want to do before they die. This study aimed to describe responses to an activity within a Massive Open Online Course (MOOC) where people considered what was important when faced with their own mortality. We asked participants to complete the following: "Before I Die, I want to…". The content of participants' responses ( n = 633) was analysed qualitatively with a coding schema developed and then applied. All authors independently coded the first 100 "Before I Die" statements, followed by a second round of coding where themes were verified and confirmed. Following this, two independent raters coded all 633 responses, obtaining 95.24% agreement (Cohen's Kappa = 0.789, p < 0.0005). Twelve themes emerged from the data: family; do an activity; personal aspiration; live life fully, happiness; love; the greater good; peace; legacy; gratitude; religion; and health. Responses could also be distinguished as being inward-facing (about the self), and outward-facing (about others). Reflecting on what is important and on what a person wishes to achieve or address before they die can be seen as a companion process to advance care planning which addresses what an individual wants to plan to manage their actual death.

Background: The study aimed to determine the effectiveness of an action-orientated toolkit in supporting behaviour change in relation to quality end-of-life care in acute hospital settings. The toolkit was developed to complement a programme of online end-of-life care education., Methods: A toolkit was developed from an international review of peer-reviewed literature on end of life. Toolkits were distributed (n=428) to Australian healthcare professionals over a 4-week period. An online survey was sent to all recipients; 65 responses were received (16% response rate, excluding emails returned as undeliverable). Semistructured interviews (n=10) were conducted using purposeful sampling to ensure a range of views were captured. The focus of the evaluation was on investigating (1) users' responses to the toolkit and (2) individuals' reported behaviour change., Findings: The toolkit was well received by users who reported increased confidence in communication around end-of-life matters. 59.3% of users reported making a behaviour change over the previous 4 weeks; 70.8% of those who had not made a change reported they intended to in the near future. Against expectation, the toolkit's appeal went beyond its intended audience in acute hospital settings, for example, personal care workers in aged care settings., Conclusions: Despite study limitations (self-report of a small, self-selected sample), these early findings suggest that the toolkit has potential to positively impact on end-of-life care practices. However, additional evaluation is needed to determine whether such a toolkit can positively impact on practice and on patient experience at the end of life., Competing Interests: Competing interests: CH and KD have received salary funding from the project.

Community and professional engagement describes a collaborative model of interaction between institutions of higher education and the communities in which they operate. This qualitative study aimed to examine how professional and community engagement is understood and incorporated into the role of staff members within the School of Health Sciences of one university. Twenty-one academic and professional staff were interviewed. Participants identified a range of definitions for both 'community' and 'professional' engagement, as well as the benefits and limitations of such engagement. Ability to conduct engagement was limited by time capacity when competing with other role requirements. Integration of community engagement with research and teaching requires development of a framework that addresses both the common barriers and facilitators to engagement.