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Background: Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. Its goals are to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services and is grounded in equal partnerships between civic life, community members, patients and carers, and service providers. This takes many forms, including what we have termed the 'citizen organization'. Objectives: This paper reports on an evaluation of Little Haven's model of care and explores the organization's place as a 'citizen' of the community it services. Design: A co-designed evaluation approach utilizing mixed-method design is used. Methods: Multiple data sources obtained a broad perspective of the model of care including primary qualitative data from current patients, current carers, staff, volunteers and organizational stakeholders (interviews and focus groups); and secondary quantitative survey data from bereaved carers. Thematic analysis and descriptive statistics were generated. Results: This model of care demonstrates common service elements including early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users, with strong community engagement. These elements enable high-quality care for patients and carers who describe the support as 'over and above', enabling good quality of life and care at home. Staff and volunteers perceive the built-in flexibility of the model as critical to its outcomes; the interface between the service and the community is similarly stressed as a key service element. Organizational stakeholders observed the model as a product of local activism and accountability to the community. Conclusion: All participant groups agree the service model enables the delivery of excellent care. The construction of a community palliative care service as a citizen organization emerged as a new concept. Plain language summary: 'Citizen organization': an Australian community-based palliative care service model Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. It aims to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services in equal partnerships between civic organizations, community members, patients and carers, and service providers. We undertook an evaluation of Little Haven's model of care by speaking with current patients, current and past carers, staff, volunteers and stakeholders about their experiences of Little Haven. We found that Little Haven's model contains the essential elements of a palliative care service and provides early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users. They have strong community engagement with a strong background in community activism. We identified that Little Haven's 'being in the community' goes beyond service provision or even sentiment. We observed a symbiotic relationship between the organization and the community it supports in what we have termed the 'citizen organization'. The distinctive characteristic of the citizen organization is its inseparability from the community in which it dwells. [ABSTRACT FROM AUTHOR]

Objectives: Voluntary assisted dying (VAD) legislation has now been passed in all Australian states. Although VAD has been operating in many settings worldwide for a considerable time, the specific costs associated with VAD seem unclear. The aim of this study was therefore to outline the common resource implications associated with VAD. Methods: A rapid literature review and grey literature search were undertaken. Results: We found a paucity of empirically informed detail regarding the actual costs required to implement VAD. Hence, we tabulated a list of potential costs that could be used for subsequent evaluation and a future research agenda. Conclusions: There is a lack of publicly available information related to the costs associated with implementing VAD. Given that this is a significant change in policy and many multidisciplinary practitioners may be directly or indirectly involved in VAD it is important that associated costs are clearly outlined so that appropriate resources can be allocated. What is known about the topic? Voluntary assisted dying (VAD) legislation has now been passed in all Australian states. Although VAD has been operating internationally for a considerable time, there have been calls for more data to understand the resources required to implement VAD. What does this paper add? We found a paucity of empirically informed detail regarding the actual costs required to implement VAD. Hence, we tabulated a list of potential costs that could be used for subsequent evaluation and outline a research agenda. What are the implications for practitioners? Given that a significant number of practitioners may be directly or indirectly involved in VAD it is important that associated costs are clearly outlined so that appropriate resource allocation can be considered. [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]

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 Safety findings 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. Consumer-directed and person-centred care is crucial in appropriately servicing all older adults, given each older adult has a diverse background, which impacts their aged care experiences. This paper reports on the development of web pages designed to support the knowledge and information needs of the aged care workforce. There is a need for such resources within this sector to inform culturally appropriate and safe care. [ABSTRACT FROM AUTHOR]

Introduction Research in palliative care (PC) is often regarded as challenging due to the vulnerability of the population and other peculiarities. We aim to systematically identify barriers to research in PC in the literature. Methods The electronic databases CINAHL, MEDLINE were searched for papers published in the last 25 years. Citations and then abstracts were screened for inclusion. Original papers were included on first-level analysis. On a second level reviews, reports, and position papers were analyzed. Papers containing a direct patient report were specifically analyzed. Barriers were categorized (ethical considerations, financial and time expenses, study design and methodology, human resources and politics) and results quantified. Results Twenty-one original papers and 65 other papers were included. Five studies involved patients directly, five were systematic reviews, three were study experiences, and seven were surveys or workshop reports. Most papers originated from UK, USA, or Norwegian Universities. Ethics and methods were the most often mentioned categories on both levels. Accrual, attrition, and gatekeeping were frequently named barriers. Complex invasive studies or possible side effects hinder patients' participation, as patients are often willing to participate for altruistic motivations. Discussion Barriers to PC research are ethical concerns and methodological challenges. Possible strategies to overcome methodological barriers include international collaborative efforts to include more patients and improve study designs. Ethical barriers indicate the need for patient involvement in the research development process and tailoring research specifically to the PC population. [ABSTRACT FROM AUTHOR]

While many of the maladies of the 20th century are steadily coming under control, the march of neurodegenerative disorders continues largely unchecked. Dementias are an exemplar of such disorders; their incidence and prevalence continue to rise, in large part due to a steadily ageing population worldwide. They represent a group of chronic, progressive and, ultimately, fatal neurodegenerative diseases. Dementia has remained therapeutically recalcitrant. It is not a single disease, and because of that, we cannot expect a single panacea. While primary prevention rightly gains prominence, those with established disease currently require a shift in focus from curative intent towards improved quality of life. Enter palliative care. The sheer number and complexity of needs of patients with dementia, from the physical to the psychosocial and spiritual, necessitates the engagement of a wide range of medical disciplines, nursing and allied health professionals. One of those disciplines, as highlighted in the recent Australian Royal Commission into Aged Care Quality and Safety, is palliative care. This paper shall expand upon that role in the overall context of care for those with dementia. [ABSTRACT FROM AUTHOR]

Introduction: People living with advanced cancer want to continue participating in their valued occupations amid cancer progression. However, increasing dependence and bodily deterioration challenge a person's ability to do so, thus requiring adaptation to how they engage in their occupations. Theoretical frameworks on the process of occupational adaptation often do not address the implications of progressive functional decline. Methods: A longitudinal phenomenological design was used to understand the lived experience of occupational engagement for working‐aged adults living with advanced cancer. A semi‐structured interview series explored participants' experience of occupational engagement and how this changed over time. Data were analysed thematically and mapped against the Model of Human Occupation (MOHO). Findings: Eight adults (40–64 years old) participated in 33 interviews over 19 months. Three themes were constructed from the data: ongoing adaptation through doing, the significance of volition in adaptation, and everyday life is contingent on my environment. Study findings demonstrate that the process of adaptation occurs through occupational engagement, is motivated by volition, and is affected by the environment. Volition and the environment play a more central role in occupational adaptation than occupational competency for the advanced cancer cohort. Conclusion: Study findings further MOHO's theoretical conceptualisation of occupational adaptation by identifying the centrality of volition and the environment in the process of adaptation. For people living with advanced cancer, disease progression results in unremitting functional decline, thus rendering competency an unstable and untenable construct. Rather, this paper argues that occupational adaptation is facilitated by volition (i.e., the motivation behind the doing) and the environment, thus fostering a sense of identity and meaning at the end of life. Occupational therapists' awareness of the significance of volition and the environment can thus foster continued occupational engagement and meaning at the end of life for people living with advanced cancer. [ABSTRACT FROM AUTHOR]

Policy and research acknowledge that the quality of end-of-life care in hospitals can be poor, with families reporting significant concerns regarding physical and psychosocial care. In order to design appropriate evidenced-based care approaches, we conducted qualitative research examining the perspectives of bereaved families of patients who received end-of-life care in our health network. This paper reports on ethical dilemmas facing practitioner-researchers conducting interviews with bereaved families. We recruited 40 bereaved family members to participate in semi-structured interviews discussing the care a loved one received while a patient under the general medicine units. Bereaved participants expressed grief, humour and anger regarding their experience, and several reported perceptions of negligent and harmful care. Irrespective of the protocols in place to mitigate distress, this posed an ethical dilemma for the practitioner-researcher as a member of the health network, who needed to balance clinical and research roles when responding to distress. The practitioner-researcher's own bias and assumptions emerged when analysing families' distressing recollections. More broadly, the issues discussed have clinical implications for models of hospital bereavement support. Participants' use of photos and mementos jointly served to include the presence of the deceased in the research interview, but also highlighted the potential to utilise visual methods to examine sensitive research issues. It helps every practitioner-researcher to distinguish between research-oriented goals and clinical responsibilities to care provision as they consider their human research ethics application before beginning any research. [ABSTRACT FROM AUTHOR]

Objectives: This study describes the model of care provided by an integrated respiratory and palliative care service for patients with advanced lung disease, and assesses the potential impact of the service on acute hospital utilisation and cost. Methods: This study implemented an integrated specialist care service at a single tertiary teaching hospital in Melbourne, Victoria, Australia. The service provided disease-orientated care, alongside symptom management and advance care planning, and comprised both outpatient clinic (OPC) and home visit (HV) capacity for those with barriers to accessing OPC. Acute hospital utilisation and hospital cost were analysed with a paired t -test 90 days before/after the first physician review. Results: Between April 2017 and 2019, 51 patients received 59 HVs, whereas between July 2018 and 2020, 58 patients received 206 OPC reviews. Acute hospital admissions decreased by 51% in the HV cohort (P < 0.05) and by 46% in the OPC cohort (P = 0.01); total bed days of acute admissions decreased by 29% in the HV cohort (P = n.s.), and by 60% in the OPC cohort (P < 0.05); and specialist outpatient clinic attendances decreased in the OPC cohort by 55% (P < 0.01). There was a decrease in hospital cost for the HV cohort by 3% (cost savings of A$18 579), and in the OPC cohort by 23% (cost savings of A$109 149). Conclusions: This model of care provided specialist respiratory management with seamless integration of palliative care, with the capacity for home visits. There was a decrease in acute hospital utilisation and overall cost savings observed in both HV and OPC cohorts. What is already known about the topic? International guidelines recommend palliative care for patients with advanced lung disease, although the ideal model for this care is uncertain. What does this paper add? This model of integrated respiratory and palliative care provided disease-orientated care, alongside symptom management and advance care planning, with unique physician home visit capacity, which addressed barriers to receiving specialist care. What are the implications for practitioners? This study describes a model of integrated respiratory and palliative care that can positively impact acute hospital utilisation and provide cost savings. [ABSTRACT FROM AUTHOR]

Australia is one of the most successful multi-cultural countries in the world, resulting from continuous immigration for the last 70 years or so. Australia is home for people from almost 200 countries with more than one in five speaking a language other than English at home. Some people arrive in Australia seeking protection from conflict in their own country. They may seek protection as a refugee and in the meantime live in the community while awaiting the outcome of their asylum request. Drawing on a story of one asylum seeker, this paper describes some of the key considerations required in caring for an asylum seeker who is facing the end of their life, making recommendations for addressing their often-complex care needs. [ABSTRACT FROM AUTHOR]

Background: Recruitment for randomised controlled trials in palliative care can be challenging; disease progression and terminal illness underpin high rates of attrition. Research into participant decision-making in medicinal cannabis randomised controlled trials (RCTs) is very limited. Nesting qualitative sub-studies within RCTs can identify further challenges to participation, informing revisions to study designs and recruitment practices. This paper reports on findings from a qualitative sub-study supporting RCTs of medicinal cannabis for symptom burden relief in patients with advanced cancer in one Australian city.Methods: Semi-structured qualitative interviews were conducted with 48 patients with advanced cancer, eligible to participate in a medicinal cannabis RCT (n=28 who consented to participate in an RCT; n=20 who declined). An iterative and abductive approach to thematic analysis and data collection fostered exploration of barriers and enablers to participation.Results: Key enablers included participants' enthusiasm and expectations of medicinal cannabis as beneficial (to themselves and future patients) for symptom management, especially after exhausting currently approved options, and a safer alternative to opioids. Some believed medicinal cannabis to have anti-cancer effects. Barriers to participation were the logistical challenges of participating (especially due to driving restrictions and fatigue), reluctance to interfere with an existing care plan, cost, and concerns about receiving the placebo and the uncertainty of the benefit. Some declined due to concerns about side-effects or a desire to continue accessing cannabis independent of the study.Conclusions: The findings support revisions to subsequent medicinal cannabis RCT study designs, namely, omitting a requirement that participants attend weekly hospital appointments. These findings highlight the value of embedding qualitative sub-studies into RCTs. While some challenges to RCT recruitment are universal, others are context (population, intervention, location) specific. A barrier to participation found in research conducted elsewhere-stigma-was not identified in the current study. Thus, findings have important implications for those undertaking RCTs in the rapidly developing context of medical cannabis. [ABSTRACT FROM AUTHOR]

Objective: Despite needs, people with advanced non-malignant respiratory disease are infrequently referred to palliative care services. Integrated models of palliative care and respiratory service delivery have been advocated to address this inequity of access. This study mapped current ambulatory palliative care service provision for patients with advanced non-malignant respiratory disease in Australia and New Zealand. Methods: An online survey was distributed to the palliative care physician membership of the Australian and New Zealand Society of Palliative Medicine. Information was sought regarding access to specific breathlessness and integrated respiratory and palliative care services, and their operation. Data were described using descriptive statistics. Results: In all, 133 respondents (93 from Australia, 40 from New Zealand; representing 55 Australian and 26 New Zealand discrete sites) with complete data were available for analysis. More than half the respondents reported seeing patients with advanced non-malignant respiratory disease frequently (56/97; 58%), and 18 of 81 services (22%) reported having breathlessness or integrated respiratory and palliative care services caring for this patient group. Such services were mostly staffed by respiratory and palliative care doctors and nurses and based in the clinic environment, with limited support available outside this setting. Of the 63 respondents without existing breathlessness or integrated services, 49 (78%) expressed interest in their establishment, with limited resources cited as the most common barrier. Conclusions: There is limited availability of integrated respiratory and palliative care or specialised breathlessness services in Australia and New Zealand despite widespread support by palliative care physicians. This study provides a snapshot to inform strategic service development. What is known about the topic?: People with advanced respiratory disease have very significant morbidity with complex needs equivalent to, and in many cases more intense than, people with end-stage lung cancer; they also have significant mortality. Yet, these people frequently do not access palliative care services. The establishment of integrated respiratory and palliative care services has been advocated as an effective means to overcome the barriers to palliative care access. Such services have demonstrated improved patient and family-reported outcomes, as well as service-level improvements. What does this paper add?: This paper maps the availability of integrated respiratory palliative care services in Australia and New Zealand. We reveal that although most palliative care physicians report seeing patients with advanced respiratory disease in practice, just one-fifth of services report having an integrated service approach. There was high interest and enthusiasm for such services (78%), but resources limited their establishment. What are the implications for practitioners?: Palliative care services recognise the needs of patients with advanced respiratory disease and the benefits of integrated respiratory and palliative care services to address these needs, but scarcity of resources limits the ability to respond accordingly. This study provides a snapshot of current service level to inform strategic development. [ABSTRACT FROM AUTHOR]

Background: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when working with this vulnerable cohort of children and their families. As part of a larger body of work to develop consensus‐based recommendations for SLTs working in PPC, it is important to investigate demographic and caseload characteristics. Aims: This exploratory study aimed to gather previously undocumented international demographic data pertaining to SLT service provision, caseload and training in PPC. Additionally, it sought to ascertain the current treatment and assessment approaches of SLTs, and if variations exist in beliefs and practices. Methods & Procedures: An anonymous cross‐sectional survey was designed and reported according to the Checklist for Reporting Results of Internet E‐Surveys (CHERRIES). The online survey consisted of 40 items spanning four domains: (1) demographic information, (2) caseload information, (3) service provision and (4) training and education. SLTs from Australia, Canada, New Zealand, the UK, Ireland and the United States were recruited using a purposive snowball sampling approach. Descriptive analysis of closed‐ended survey responses and content analysis of open‐ended responses are presented. Outcomes & Results: A total of 52 respondents completed the survey. SLTs worked in a variety of PPC settings, with patients of varying age and disease groups. Over 50% of participants reported working in PPC for ≤ 4 years. Genetic disorders (34%), oncology (27%) and neurological conditions (21%) made up a significant portion of respondents' caseloads. Reported treatments and assessment approaches used by SLTs are not unique to a PPC population. Barriers and enablers for practice were identified. A portion of participants did not feel trained and prepared to assess (19.2%) or treat (15.4%) PPC clients. Conclusions & Implications: This study confirms that SLTs internationally have a role in the management of communication and swallowing impairments in a PPC context. However, whether current training and resources adequately support SLTs in this role remains questionable. This paper helps to provide SLTs, administrators, professional associations and tertiary institutions with foundational data to help inform workforce planning, advocacy efforts and training priorities. What this paper addsWhat is already known on the subjectThe published multidisciplinary literature has identified that SLTs have a role in PPC. However, there has been no targeted research investigating the professional characteristics of clinicians in this context, nor any detailed information regarding associated clinician beliefs or management approaches.What this paper adds to existing knowledgeThis study is a snapshot of attributes, practice patterns and beliefs of SLTs who work with a PPC population. It highlights SLT perspectives of education and training, as well as meta‐perceptions of themselves within the multidisciplinary team.What are the potential or actual clinical implications of this work?Data presented in this paper will help to enable SLTs, organizations and associations to augment service provision and determine future professional development priorities within the field of PPC. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to achieve consensus regarding what distinguishes specialist from non-specialist palliative care to inform service organisation and delivery to patients with life-limiting conditions. Methods: A three-phase Delphi study was undertaken, involving qualitative interviews and two questionnaire cycles. Thirty-one clinicians (nurses, doctors and social workers) working with a wide range of patients participated in interviews, of whom 27 completed two questionnaire cycles. Results: Consensus was gained on 75 items that define specialist palliative care and distinguish it from non-specialist palliative care. Consensus was gained that specialist palliative care clinicians have advanced knowledge of identifying dying, skills to assess and manage complex symptoms to improve quality of life, have advanced communication skills and perform distinct clinical practices (e.g. working with the whole family as the unit of care and providing support in complex bereavement). Non-specialist palliative care involves discussions around futile or burdensome treatments, and care for people who are dying. Conclusions: Areas of connection were identified: clinicians from disease-specific specialties should be more involved in leading discussions on futile or burdensome treatment and providing care to people in their last months and days of life, in collaboration with specialists in palliative care when required. What is known about the topic?: At present there is no evidence-based definition or agreement about what constitutes specialist palliative care (as opposed to palliative care delivered by non-specialists) in the Australian Capital Territory. An agreed definition is needed to effectively determine the workforce required and its clinical skill mix, and to clarify roles and expectations to mitigate risks in not adequately providing services to patients with life-limiting conditions. What does this paper add?: This paper offers, for the first time, an evidence-based definition that distinguishes specialist palliative care from non-specialist palliative care. End of life care and bereavement support are not just the remit of specialist palliative care clinicians. Clinicians from beyond specialist palliative care should lead discussions about futile or burdensome treatment. What are the implications for practitioners?: The findings of this study can facilitate implementation of palliative care strategies by enabling practitioners and patients to distinguish who should be delivering what care. [ABSTRACT FROM AUTHOR]

Objective: To review implementation of the Comprehensive Care Standard (CCS) by evaluating assessment outcome data of Australian health service organisations (HSOs) from January 2019. The CCS was introduced with the National Safety and Quality Health Service (NSQHS) Standards (second edition). It has 36 actions and over 40 resources to support implementation. Methods: Retrospective assessment outcome data submitted by accrediting agencies were examined to gauge progress of CCS implementation by considering met or other ratings of the CCS actions. Results: There were 495 assessments completed between January 2019 and December 2020. Most (71% n = 352) HSOs met the requirements of the CCS after initial assessment. Seventy-four (15%) of the HSOs did not meet all the requirements and a further 58 (12%) HSOs were provided with recommendations to meet the actions. Conclusions: There was indication of underperformance related to some actions in the CCS. The assessment data highlighted common issues for organisations including difficulties implementing governance processes, demonstrating effective care planning, implementing the end-of-life care actions and some minimising harm actions. Future evaluation of the implementation of the CCS may benefit from strengthening links between other safety and quality programs. What is known about the topic? The NSQHS Standards are used for assessment of hospital quality and safety in Australia. The Comprehensive Care Standard aims to ensure patients receive care that meets their needs, improves outcomes and reduces harm. What does this paper add? The Comprehensive Care Standard early implementation data in Australian hospitals is presented. What are the implications for practitioners? Health service organisations are required to meet the actions in the Comprehensive Care Standard. [ABSTRACT FROM AUTHOR]

The needs of older lesbian and gay people regarding access and use of aged‐care services remain underresearched. This paper reports the findings of 33 qualitative interviews with older lesbian women and gay men about their perceptions and experiences of residential aged‐care and home‐based aged‐care services in Australia. The focus of this paper is their preparedness for using aged‐care services. The results highlight that participants had a number of concerns related to accessing residential‐care services in particular, including perceptions of a lack of inclusivity and concerns of potential for discrimination and hostility, loss of access to community and partners, decreased autonomy and concerns relating to quality of care and the potential for elder abuse. Participants noted a number of strategies they employed in avoiding residential‐care services, including the use of home‐care services, renovating the home for increased mobility, moving to locations with greater access to outside home‐care services, a preference for lesbian/gay‐specific housing and residential‐care options if available, and the option of voluntary euthanasia to ensure dignity and autonomy. Participants, on the whole, were hopeful that they would never require the use of residential‐care services, with some believing that having current good health or the support of friends could prevent this from happening. The findings suggest that older lesbian and gay people have a variety of concerns with aged‐care and may need additional support and education to improve their perceptions and experiences of services, whether these are needed presently or in the future. [ABSTRACT FROM AUTHOR]

Aim: To describe a small multidisciplinary team's experience of the process of embedding nurse‐led supportive care into an existing Chronic Obstructive Pulmonary Disease outpatient service. Design: Case study methodology Methods: Data were collected from multiple sources including key documents and semi‐structured interviews with healthcare professionals (n = 6) conducted between June and July 2021. A purposive sampling strategy was used. Content analysis was applied to key documents. Interviews were transcribed verbatim and analysed using an inductive approach. Results: Subcategories under the four‐stage process were identified from the data. Assessment: evidence of needs of patients with Chronic Obstructive Pulmonary Disease; gaps in care and evidence of other models of supportive care. Planning: setting the supportive care service structure and intention; resources and funding; leadership, specialization and respiratory/palliative care roles. Implementation: relationships and trust; embedding supportive care and communication. Evaluation: benefits and positive outcomes for staff and patients, and, improvements and future considerations for supportive care in the COPD service. Conclusion: A collaboration between respiratory and palliative care services resulted in successfully embedding nurse‐led supportive care in a small outpatient service for patients with Chronic Obstructive Pulmonary Disease. Nurses are well placed to lead new models of care that aim to address unmet biopsychosocial‐spiritual needs of patients. More research is needed to evaluate nurse‐led supportive care in Chronic Obstructive Pulmonary Disease and other chronic illness settings; the effectiveness of nurse‐led supportive care from the perspective of patients and caregivers and the impact of nurse‐led supportive care on health service usage. Patient or Public Contribution: The development of the model of care is informed by ongoing discussions with patients with COPD and their caregivers. Data availability statement: Research data are not shared (due to ethical restrictions). Impact Embedding nurse‐led supportive care in an existing Chronic Obstructive Pulmonary Disease outpatient service is achievable.Nurses with clinical expertise can lead innovative models of care that address the unmet biopsychosocial‐spiritual needs of patients with conditions such as Chronic Obstructive Pulmonary Disease.Nurse‐led supportive care may have utility and relevance in other chronic disease contexts. [ABSTRACT FROM AUTHOR]

Advances in the management of chronic diseases, combined with an aging population, have escalated the prevalence of people with life-limiting conditions and demand for palliative care. In Australia, this has prompted calls for change in policy frameworks, service systems and funding models that underpin care. The complex social, cultural and policy transformation required to enact these changes has been problematic. This paper reports on qualitative research into a unique, Australian Community Palliative Care program reflecting these aspirational changes. The research examined the program design and its implementation through the perspectives of program staff and volunteers. [ABSTRACT FROM AUTHOR]

Background: Despite a fast-paced environment, the emergency clinician has a duty to meet the palliative patient's needs. Despite suggested models and interventions, this remains challenging in practice. Aim: To raise awareness of these challenges by exploring the experience of palliative care patients and their families and informal carers attending the emergency department, and of the clinicians caring for them. Design: Qualitative systematic literature review and thematic synthesis. Search terms related to the population (palliative care patients, family carers, clinicians), exposure (the emergency department) and outcome (experience). The search was international but restricted to English and used a qualitative filter. Title, abstracts and, where retrieved, full texts were reviewed independently by two reviewers against predefined inclusion criteria arbitrated by a third reviewer. Studies were appraised for quality but not excluded on that basis. Data sources: MEDLINE [1946-], Embase[1947-], CINAHL [1981-] and PsycINFO [1987-] with a bibliography search. Results: 19 papers of 16 studies were included from Australia (n = 5), the United Kingdom (n = 5), and United States (n = 9) representing 482 clinical staff involved in the emergency department (doctors, nurses, paramedics, social workers, technicians), 61 patients and 36 carers. Nine descriptive themes formed three analytic themes: 'Environment and Purpose', 'Systems of Care and Interdisciplinary Working' and 'Education and Training'. Conclusion: In the included studies, provision of emergency palliative care is a necessary purpose of the emergency department. Failure to recognise this, gain the necessary skills or change to systems better suited to its delivery perpetuates poor implementation of palliative care in this environment. [ABSTRACT FROM AUTHOR]

Heart failure is a chronic condition with various implications for individuals and families. Although the importance of implementing palliative care is recommended in best practice guidelines, implementation strategies are less clear. This study sought to; (1) determine Australian and New Zealand cardiovascular nurses and physicians' end of life care attitudes and specialist palliative care referral in heart failure and; (2) determine self-reported delivery of supportive care and attitudes towards service names. An electronic survey was emailed to members of four peak bodies and professional networks. Participants were also recruited through social media. Paper-based versions of the survey were completed by attendees of the 66th Cardiac Society of Australia and New Zealand Annual Scientific Meeting, August 2018. There were 113 completed responses included in the analyses. Participants were nurses (n = 75), physicians (n = 32) and allied health professionals (n = 4). Most (67%) reported they were comfortable with providing end of life care; however, fewer respondents agreed they received support for their dying patients and one-third experienced a sense of failure when heart failure progressed. Most (84–100%) participants agreed they would refer a heart failure patient later in the illness trajectory. There was a more favourable attitude towards the service name 'supportive care' than to 'palliative care'. Comfort with end of life discussions is encouraging as it may lead to a greater likelihood of planning future care and identifying palliative care needs. Peer support and supervision may be useful for addressing feelings of failure. The use of needs-based assessment tools, adopting the service name 'supportive care' and further research focusing on primary palliative team-based approach is required to improve palliative care access. Cardiovascular nurses and physicians are comfortable providing end of life care, but referrals to palliative care in the later stages of heart failure persists. [ABSTRACT FROM AUTHOR]

Objective: This quality improvement project aimed to explore the experience of home care nurse managers implementing a general palliative approach to care. Implementation comprised several interlinking activities encompassing stakeholder engagement and an education program in the outer eastern region of a home care and nursing organisation in Melbourne, Australia, between September 2019 and December 2020. Background: High quality provision of community-based palliative and end-of-life care means people are much more likely to die at home, supported by family, friends and services. To achieve this, care staff must be adequately trained and supported, alongside a collaborative approach with other generalist and specialist providers. Study design and methods: This Case Study reports on the participant perspectives of the stakeholder engagement and education program. Focus groups and an interview were used to elucidate the experience of nursing and allied health professionals providing a general palliative approach in the community. The 2006 National Institute of Clinical Studies framework to identify barriers to best practice healthcare guided the development of focus group questions and the deductive analysis of data. Results: Seven Nursing Care Managers and one Social Worker participated in two online focus groups and one interview. Three overarching themes highlighted the value of tailored education in increasing staff knowledge and confidence, the factors for a successful generalist-specialist partnership, and the unique nature of the home care setting which requires accessible systems and processes. Discussion: This project supports assertions that generalist services can play a valuable role when a palliative approach to care is incorporated. It also underscores the importance of collaborative working partnerships between generalist and specialist services in providing quality community-based palliative care. Future research should examine the needs and perspective of clients, carers and families receiving a general palliative care approach in the community. Implications for research, policy and practice: Investment in developing the capacity and capability of generalist service staff to deliver palliative care is vital, particularly when caring for people in their homes. Although small, this study demonstrates that consideration should be given to embedding staff with specialist palliative care training within generalist organisations to drive and champion evidence-based palliative care provision, training, policies and procedures that meet the unique needs of mobile workforces. Future research should examine the effectiveness of different models and methods for education and generalist-specialist partnerships that meet the needs of mobile home nurses, particularly regarding long-term impact and sustainability. What is already known about the topic? * Most Australians prefer to be cared for and die in their own home. * Home care nurses are key generalist health professionals who support community-based palliative and end-of-life care, organising and providing care, coordinating the input of other health and social care professionals. * Home care nurses face challenges in meeting their clients' palliative care needs (such as symptom management and communication) and have deficits in their knowledge and confidence of caring for palliative clients. What this paper adds: * This case study demonstrated that facilitating ongoing education opportunities that draw on the expertise of local palliative care champions or internal specialists can enhance care provision. * Nurse care managers believe the value of generalist services, particularly home care services, in the generalist-specialist palliative care partnership, needs to be understood and respected. * Tailored investment in home care to provide a general palliative approach would be beneficial given the unique challenges of this mobile workforce. [ABSTRACT FROM AUTHOR]

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

The main goal of palliative care is to relieve suffering. Opioids are an essential part of the pharmacological options required to address suffering by helping to relieve the pain and chronic breathlessness that may be experienced by someone with a life-limiting illness. This paper considers the recent history and current issues of the 'opioid crisis' providing recommendations to which regulatory and peak bodies can work with the Australian government, ensuring consistent adherence to WHO guidelines maintaining access to evidence based opioid management for palliative care patients whilst actively avoiding unintended suffering restricted access can cause. The recommendations are as follows: Review of the Palliative Care schedule of the Pharmaceutical Benefit Scheme Support of prescribers with current evidence, clinical practice guidelines and regulatory frameworks National opioid prescribing policies promoting linkages between palliative care and pain and addiction specialists. National real time monitoring of all opioid prescriptions Palliative care involvement in all opioids stewardship programs in acute services. Reform Medical Benefits Schedule to improve access for primary and other speciality practitioners to provide palliative care services. Compulsory palliative care education in undergraduate medical, nursing and allied health tertiary courses. Adequate, consistent stock of evidence based opioids for palliative care in community pharmacies and residential aged care facilities. These recommendations provide the regulatory guidance required to ensure persons with life limiting illness have continued access to safe and effective medication that can relieve suffering. [ABSTRACT FROM AUTHOR]

Background: Most people diagnosed with dementia live and die in community settings. This study aimed to: (i) describe the palliative care needs of patients with dementia at commencement of community palliative care; (ii) compare palliative care needs between patients with dementia and those with lung cancer and cardiovascular disease (CVD). Methods: This is a population-based descriptive study that involved 8,727, 7,539 and 25,279 patients who accessed community palliative care across Australia principally because of dementia, CVD and lung cancer. Patients' functional abilities, symptom burden and clinical condition were assessed at commencement of community alliative care using five validated instruments: Resource Utilisation Groups—Activities of Daily Living, Australia-modified Karnofsky Performance Status, Symptoms Assessment Scale, Palliative Care Problem Severity Score and Palliative Care Phase. We fitted ordinal logistic regression models to examine the differences in these assessments for dementia versus CVD and lung cancer, respectively. Results: Overall, patients with dementia generally had low levels of distress from symptoms but poor functional problems. Compared to the other two diagnostic groups, palliative care for dementia was often initiated later and with shorter contacts. Also, patients with dementia presented with poorer functional performance (adjusted OR (aOR) = 4.02, Confidence Interval (CI): 3.68 – 4.38 for dementia vs CVD; aOR = 17.59, CI: 15.92 – 19.44 for dementia vs lung cancer) and dependency (aOR = 5.68, CI: 5.28 – 6.12 for dementia vs CVD; aOR = 24.97, CI: 22.77 – 27.39 for dementia vs lung cancer), but experienced lower levels of distress and problem severity for the majority of symptoms. Conclusion: Community palliative care is often an ideal care option for many patients, particularly for those with dementia. We call for expansion of the palliative care workforce and options for home care support to optimize accessibility of community palliative care for dementia. [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]

This paper describes a mixed method survey that was administered to a group of Australian palliative care social workers (n = 27). Specifically, it aimed to investigate the ways that social workers understood and worked with clients who were estranged from family at the end of life. Respondents suggested that estrangement potentially impacted clients emotionally, practically, and existentially. They were challenged to make clear assessments, provide emotional support, encourage news ways of thinking about estrangement, to manage practical issues, work with the client’s family, and monitor their own professional role. Theories and models of intervention and levels of training are also discussed. [ABSTRACT FROM AUTHOR]

The acute health care system in Australia, as in the global north, has been increasingly dominated by neoliberal market principles prioritising efficiency and cost reduction. This has occurred in conjunction with a shift towards ‘personalised care’ models in health and social services. Personalised care models are intended to support the provision of holistic health care and consumer choice. Yet, the bureaucratic context of acute health care produces constrained applications of person-centred care that can undermine patient participation. Personalised care models have been criticised for diminishing the choices available to socioeconomically disadvantaged groups. There has been scant attention to these equity issues and ethical implications of the model for older people transferring from acute hospital settings to residential aged care. This is significant, as this major life event is associated with social- and identity-related losses; can produce poor health outcomes; and is affecting an increasing population of older people. The aim of this paper is to address this gap in the debate through a critical literature review applying Tronto’s critical ethics of care. We highlight the current Australian context for this patient group and the transferability of palliative care models as an example for change in practice and resource allocation. [ABSTRACT FROM PUBLISHER]

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]

Rigorous clinical research in palliative care is challenging but achievable. Trial participants are likely to have deteriorating performance status, co-morbidities and progressive disease. It is difficult to recruit patients, and attrition unrelated to the intervention being trialled is high. The aim of this paper is to highlight practical considerations from a forum held to discuss these issues by active palliative care clinical researchers.To date, the Australian Palliative Care Clinical Studies Collaborative (PaCCSC) has randomized more than 500 participants across 12 sites in 8 Phase III studies. Insights from the 2010 clinical research forum of the PaCCSC are reported. All active Australian researchers in palliative care were invited to present their current research and address three specific questions: (1) What has worked well? (2) What didn’t work well? and (3) How should the research be done differently next time?Fourteen studies were presented, including six double-blind, randomized, controlled, multi-site trials run by the PaCCSC. Key recommendations are reported, including guidance on design; methodologies; and strategies for maximizing recruitment and retention. These recommendations will help to inform future trial design and conduct in palliative care. [ABSTRACT FROM PUBLISHER]

Introduction: After-hours services are essential in ensuring patients with life limiting illness and their caregivers are supported to enable continuity of care. Telehealth is a valuable approach to meeting after-hours support needs of people living with life-limiting illness, their families, and caregivers in rural and remote communities. It is important to explore the provision of after-hours palliative care services using telehealth to understand the reach of these services in rural and remote Australia. A preliminary search of databases failed to reveal any scoping or systematic reviews of telehealth in after-hours palliative care services in rural or remote Australia. Aim: To review and map the available evidence about the use of telehealth in providing after-hours palliative care services in Australian rural and remote communities. Methods: The proposed scoping review will be conducted using the Arksey and O'Malley methodological framework and in accordance with the Joanna Briggs Institute methodology for scoping reviews. The reporting of the scoping review will be guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). This review will consider research and evaluation of after-hours services using telehealth for palliative care stakeholders in rural and remote Australia. Peer reviewed studies and grey literature published in English from 2000 to May 2021 will be included. Scopus, Web of Science, CINAHL Complete, Embase via Ovid, PsycINFO via Ovid, Emcare via Ovid, Medline via Ovid, and grey literature will be searched for relevant articles. Titles and abstracts will be screened by two independent reviewers for assessment against the inclusion criteria. Data will be extracted and analysed by two reviewers using an adapted data extraction tool and thematic analysis techniques. Diagrams, tables, and summary narratives will be used to map, summarise and thematically group the characteristics of palliative care telehealth services in rural and remote Australia, including stakeholders' perceptions and benefits and challenges of the services. [ABSTRACT FROM AUTHOR]

Assisted dying is a topic fraught with theological and ethical contention. It has been regularly debated in Australian parliaments and is currently under active consideration in New South Wales and Victoria. The Victorian process involved a public inquiry by a committee of Victoria's upper house which attracted more than a thousand submissions. This paper analyses the submissions made to that committee by Christian churches and organizations with a Christian affiliation. All bar one of the submissions were opposed to legalising assisted dying. The two most common themes in the Christian submissions were the need to expand palliative care services and that adequate palliative care could be an alternative to assisted dying; and that even narrowly constrained legalising of assisted dying could lead to a slippery slope with further expansions and potential harm to vulnerable populations. These arguments were not successful and the committee supported legalising assisted dying. Possible reasons for the failure of the Christian arguments are explored. [ABSTRACT FROM AUTHOR]

The majority of cancer deaths in countries such as Australia are predictable and most likely to occur in hospital. Despite this, hospitals remain challenged by providing the best care for this fragile cohort, often believing that care with palliative intent at the very end-of-life is not the best approach to care. Given the importance that dying patients place on excellent symptom control, failing to provide good end-of-life care is likely to be contrary to the wishes of the imminently dying patient and their family. This becomes even more significant when the impact of care on the bereavement outcomes of families is considered. Given the rising numbers of predicable hospital deaths, an urgent need to address this exists, requiring health professionals to be cognisant of specific care domains already identified as significant for both patients and those closest to them in knowledge, care and affection. This non-systematic review's aims are to summarise the symptoms most feared by people imminently facing death which is defined as the terminal phase of life, where death is imminent and likely to occur within hours to days, or very occasionally, weeks. Further, this paper will explore the incidence and management of problems that may affect the dying person which are most feared by their family. The final section of this work includes a brief discussion of the most significant issues that require attention. [ABSTRACT FROM AUTHOR]

Background and objective The Primary Care Collaborative Cancer Clinical Trials Group (PC4) is funded by Cancer Australia to support the development of new cancer in primary care research. We undertook a research prioritisation exercise to identify cancer research priorities in Australian general practice. Methods We adapted the nominal group technique, including a literature search and stakeholder survey. An expert group from the Primary Care Collaborative Cancer Clinical Trials Group consolidated and ranked priorities. A second stakeholder survey reviewing the top 50 priorities informed a final prioritisation workshop. Results Overall, 311 priorities were identified across the cancer continuum. Nearly one-third of priorities were related to cancer survivorship and included strategies to detect recurrence, behavioural interventions and tools to assess physical and psychosocial aspects of survivorship. Prevention/early detection comprised 43.4% of priorities. Palliative care produced the least priorities (9.6%). Cross-cutting research priorities (15.1%) included quality and models of care. Discussion This is the first study to identify cancer research priorities for general practice in Australia. It could be used to inform the development of targeted research and funding to improve the care and outcomes for Australians affected by cancer. [ABSTRACT FROM AUTHOR]

The article focuses on evaluating the quality of reporting in palliative and end-of-life care intervention studies regarding social characteristics like socioeconomic position, race, religion, and main language of participants. Topics include the findings that a significant proportion of studies do not report these characteristics adequately, with a tendency to use broad categories that may not capture the diversity of participants, hindering efforts to address inequalities in palliative care.

The demand for palliative care has increased in high income countries as mortality in older adults has decreased and life expectancy increased. In this context, the priorities of palliative and end of life care (EoLC) have shifted in Australia, reflected in policy frameworks, national guidelines, service systems and funding models. However, aligning service systems and practice realities with these policy aspirations has been problematic in Australia and elsewhere. The current study investigates the recent implementation of a unique, community palliative care (CPC) programme called Heidi's Have a Go (HHaG) in regional Australia, which seemed to bridge the problematic divide between policy aspirations and practice implementation. Qualitative research was undertaken to examine the programme design and influence from the perspective of programme staff and volunteers. The data generated compelling stories on staff and patient experiences in its first 2 years, achieving service outcomes aligned with current policy and national frameworks and privileging patient voices. [ABSTRACT FROM AUTHOR]

Background: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). Methods: Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. Results: A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. Conclusions: Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. Systematic review pre-registration: PROSPERO [CRD42021244859]. [ABSTRACT FROM AUTHOR]

Aims and objectives This paper examines the use of structured Palliative Care Case Conferences in long-term care. The issues families bring to the Palliative Care Case Conference, their level of distress prior to the conference, the extent to which these issues are addressed by staff and family satisfaction with this process are described. Background In most developed countries, up to 30% of older people die in long-term care. A palliative approach generally refers to the resident and family as the 'unit of care'. Interventions, which include family in palliative care, are required in this setting. Design Descriptive and thematic results from the intervention arm of a pre-post, sequential mixed method study. Methods Examination of documents of 32 resident/family dyads participating in a Palliative Care Case Conference, and interviews with the residents' family postintervention. Results Main concerns raised by family members prior to a Palliative Care Case Conference were physical and medical needs, pain, end-of-life care planning and nutrition and hydration. Families rated a high level of concern, 7.5 on a 10-point rating scale, prior to the Palliative Care Case Conference. A formalised Palliative Care Case Conference process ensured issues relating to end-of-life care planning, pastoral care, pain and comfort and physical and medical needs were well documented by staff. Issues relating to care processes and the family role in care were less well documented. All families, interviewed postintervention, recommended Palliative Care Case Conferences; and over 90% of families felt their issues were addressed to their satisfaction. Families also reported an increased understanding of the resident's current and future care. Conclusions The Palliative Care Case Conference in long-term care provides an important platform for family to voice concerns. Palliative Care Case Conference documentation indicates that staff are attending to these issues, although more reference to concerns relating to care processes and the family role could be made. Implications for practice Increased communication between staff and family, in the form of a Palliative Care Case Conference, may reduce stress, anxiety and unwanted hospitalisations during the palliative phase. [ABSTRACT FROM AUTHOR]

Background: Attempts to develop tools to measure client satisfaction in the palliative care sector have identified a number of challenges, including the lack of common definition of ‘satisfaction’. This paper reports on the utilization of the Victorian Palliative Care Satisfaction Instrument (VPCSI) in three Victoria-wide surveys over three years, of patient and carer satisfaction with palliative care provision. Aim: The VPCSI aimed to both meet the Australian Government performance indicator reporting and facilitate quality improvement for palliative care services. Setting/participants: All palliative services receiving funding from the Victorian Department of Health were invited to participate. Feedback via survey was captured from adult patients, carers, and bereaved carers in both inpatient and community palliative care settings. Results: Overall state-wide response rates averaged 26% over the three-year trial period. Satisfaction state-wide rated very high, ranging from 66% for patients to 74% for bereaved carers. Top five items given priority to improve varied across respondent type but overall included opportunities to talk to other carers; activities to pass the time; minimizing financial burden and training for carers to perform specific care tasks. The top five rated items overall were level of respect shown as an individual; nurse responses; expertise of staff; overall palliative care team performance; and support for physical care. Conclusion: These data demonstrate that the VPCSI is an important tool for the collection of consumer satisfaction data in the palliative care sector across a wide range of service providers. [ABSTRACT FROM PUBLISHER]

The International Psycho-oncology Society (IPOS) has just celebrated its 30th anniversary. The growth of psychosocial oncology has been exponential, and this relatively new field is becoming a core service that focuses on prevention, reducing the burden of cancer, and enhancing the quality of life from time of diagnosis, through treatment, survivorship, and palliative care. Looking back over the past 30 years, we see that cancer care globally has evolved to a new and higher standard. Today, 'cancer care for the whole patient' is being accomplished with an evidence-based model that addresses psychosocial needs and integrates psycho-oncology into the treatment and care of patients. The President's Plenary Session in Lisbon, Portugal, highlighted the IPOS Mission of promoting global excellence in psychosocial care of people affected by cancer through our research, public policy, advocacy, and education. The internationally endorsed IPOS Standard of Quality Cancer Care, for example, clearly states the necessity of integrating the psychosocial domain into routine care, and that distress should be measured as the sixth vital sign after temperature, blood pressure, pulse, respiratory rate, and pain. The plenary paper also discussed the global progress being made in Europe, North America, and Australia in providing quality cancer care for the whole patient. Collaborative partnerships between IPOS and organizations such as the European Partnership Action Against Cancer and the World Health Organization are essential in building capacity for the delivery of high-quality psycho-oncology services in the future. [ABSTRACT FROM AUTHOR]

Objective: Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated-particularly around ethical and legal issues--and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community.Method: We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized.Results: We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered.Significance Of Results: Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide. [ABSTRACT FROM AUTHOR]

The article focuses on various aspects related to Occupational Therapy (OT) practices in Australia. Topics discussed include initiative taken by the journal "Occupational Therapy " to provide medical services to children suffering with Autism, invitation by the Department of Social Services in Australia, to improve government policies related to Carer Allowance assessments, and new government standards for powered wheelchairs and scooters.

In the State of Victoria, Australia, there was an identified need for a validated instrument to measure the satisfaction of people receiving palliative care. The process of gaining sector-wide cooperation to collect satisfaction data across many settings and models of care had been a challenge for many years. This was finally achieved in 2007, particularly when driven by the requirement that funding was contingent on meeting the Victorian Government's key performance indicators in relation to satisfaction. What has emerged is the ability to report to government and the sector, to compare and contrast service satisfaction and these data being used to enable improved care provision. This paper outlines the process of developing and validating the Palliative Care Satisfaction Instrument (VPCSI). Continued annual use of the instrument enables ongoing collection of benchmark data for subgroups, confirmation of core components and other psychometric consolidation measures. [ABSTRACT FROM AUTHOR]

Background: Speech and language therapists can improve the quality of life of people receiving palliative care through the management of communication and swallowing difficulties (dysphagia). However, their role in this domain is poorly defined and little is understood about the current international professional practice in this field. Aims: To examine how speech and language therapists perceive their role in the delivery of palliative care to clients, to discover current international speech and language therapist practices and to explore the similarities and differences in speech and language therapists’ practice in palliative care internationally. This will inform professional clinical guidelines and practice in this area.Design:Anonymous, non-experimental, cross-sectional survey design.Participants:Speech and language therapists working with adult and paediatric palliative care populations in Republic of Ireland, United Kingdom, United States, Canada, Australia and New Zealand where the speech and language therapist profession is well established. Method: Purposive and snowball sampling were used to recruit participants internationally using gatekeepers. An online survey was disseminated using Survey Monkey (http://www.surveymonkey.com). Results: A total of 322 speech and language therapists responded to the survey. Speech and language therapist practices in palliative care were similar across continents. Current speech and language therapist practices along with barriers and facilitators to practice were identified. The need for a speech and language therapist professional position paper on this topic was emphasised by respondents. Conclusion: Internationally, speech and language therapists believe they have a role in palliative care. The speech and language therapist respondents highlighted that this area of practice is under-resourced, under-acknowledged and poorly developed. They highlighted the need for additional research as well as specialist training and education for speech and language therapists and other multidisciplinary team members in the area of palliative care. [ABSTRACT FROM AUTHOR]

It is commonly assumed that, in the realm of ethical decision making at the end-of-life, 'luck' and 'risk' do not intrude. Nonetheless 'moral luck' (where happenstance makes a moral difference) does intrude and can have an unanticipated impact on the ultimate moral outcomes of end-of-life care. In the interests of upholding the ethical standards of end-of-life care, healthcare providers have increasingly relied on ethical principlism as a rational decision-guiding frame in the sincere belief that such an approach will enable patient self-determination and control over treatment decisions when needing end-of-life care. Due to contextual variables and associated uncertainties in end-of-life care, however, the intended moral outcomes of appeals to commonly accepted ethical principles (in particular the principle of autonomy) are not always realized. What is not always appreciated is that whether 'good' or 'bad' moral outcomes are achieved can be as much a matter of chance as of choice. This essay explores the relevance and possible implications of moral luck in end-of-life decision making and care. A key conclusion of the paper is that the notion of moral luck needs to be taken seriously in end-of-life care contexts since it can have an unanticipated impact on the outcomes of the decisions that are made and thereby on the moral interests of patients facing the end of their lives. [ABSTRACT FROM AUTHOR]

Objective. To explore the health professionals' (HPs) perceptions and experiences of advance care directives (ACDs) and advance care planning in Australian palliative care services. Methods. A nationwide survey of 105 palliative care services was conducted, with two HPs from each service invited to participate. A qualitative analysis of open responses about advance care planning was undertaken. Results. Sixty questionnaires were returned with open responses. Most responders were nurses (75%), aged ≥40 years (80%) and with a mean of 12 years palliative care experience. Data were grouped into four key themes: (1) the ACD; (2) the process of developing ACDs; (3) the process of using ACDs; and (4) the consequences of having ACDs. Participants were positive about advance care planning, commenting that ongoing communication about end-of-life care ensures mutual understanding between patients, family and HPs. Provision of care was considered easier and more efficient with an ACD in place. ACDs were perceived to reduce distrust and conflict between family, friends and HPs, and promote communication. Suboptimal documentation, clarity and explicitness limited the usefulness of ACDs when they were available. Conclusions. Advance care planning benefits HPs, patients and their family. To maximise these benefits, ACDs need to be clear, comprehensive, medically relevant and transportable documents. What is known about the topic? Ideally, advance care planning encompasses the identification and documentation of a person's preferences for future medical treatments and care in preparation for an occasion when the person cannot express their values and wishes. The uptake and practice of advance care planning is inconsistent, and the extent to which it is used by health professionals and patients is variable. Many people are cared for at the end of life in specialist palliative care services, but the intersection between palliative care and advance care planning remains under-researched. What does this paper adds? ACDs facilitate communication and advance care planning; help establish trust between health professionals, patients and their families; and make multiple aspects of care easier for HPs. Processes surrounding ACDs, particularly inadequate documentation, limit adherence and application. What are the implications for practitioners? Clear communication is necessary for effective ACD development and application. The presence of an ACD makes communication and advance care planning easier, and improves trust between HPs, patients and their family. To be useful, ACDs must be clear, comprehensive, medically relevant, transportable documents. [ABSTRACT FROM AUTHOR]

Previous research has identified that effective and high-quality communication between patients, families and professionals is a key contributing factor to end-of-life (EOL) care and recovery after bereavement. Increasingly, this communication work is being done by non-clinical staff in places such as homes and community settings. These additional care providers offer important pre- and post-bereavement support that can improve the quality of EOL care as well as promote healthy grieving for families, friends and communities. Despite this contribution, though, little is known about how these non-clinical workers use communication in their daily practices. This paper reports on the analysis of a set of nine in-depth interviews conducted in Hong Kong and in one region of Australia that examined in detail relational aspects of communication that shape interactions between non-clinical workers and service users. Data were collected during the COVID-19 health crisis, when the workers experienced exceptional restrictions on communication. The findings of this study highlight the fundamental importance of both verbal and non-verbal communication to the relationships established between non-clinical workers and service users. Specifically, greater support for the development of communication skills in non-clinical EOL workers will promote improvements in the quality of EOL care. [ABSTRACT FROM AUTHOR]

Background: Globally there are high numbers of patients with palliative care needs receiving care in hospitals. Patient reported experience measures (PREMs) provide useful data to guide improvement work. How to implement PREMs within palliative care populations is unclear. Aim: To explore the perspectives of inpatients with palliative care needs, their family members, and the clinical team regarding the use of a generic PREM as compared with a PREM designed for people with palliative care needs and related implementation factors. Design: A qualitative study was undertaken using semi-structured interviews and focus groups and integrated thematic analysis. Setting/participants: Inpatients with palliative care needs, their family members, and clinical team members were recruited from three wards in an Australian metropolitan hospital. Results: Twenty-seven interviews and three focus groups were conducted. Six themes emerged: (1) PREMs for people with palliative care needs ought to be tailored to the needs of this population; (2) PREMs should appraise whether the needs of families have been met in addition to those of patients; (3) PREMs for inpatients with palliative care needs ought to be easy to use, brief and incorporate space for free text alongside each question; (4) Implementation of PREMs for people with palliative care needs ought to consider who administers these, when and how often; (5) PREM data need to be specific enough to inform process change and/or care provision; (6) Patients and families require meaningful feedback to encourage PREM completion. Conclusions: This study provides practical guidance for PREM selection and implementation to inform improvements to care for inpatients with palliative care needs. [ABSTRACT FROM AUTHOR]

The role of the hospice is well established in providing quality care for the dying. With the drive for greater emphasis on community-based palliative care, there is a need to enable elements (especially medicines management practices) from the inpatient hospice model to be more readily available in the community environment. This paper describes the incorporation of an advanced practice pharmacist into a large metropolitan palliative care service. The focus of this appointment has been to develop strategic engagement with primary care providers to better support medicines management for people registered within a metropolitan palliative care service. Through the development of education programs, participation in quality improvement activities and by supporting the ambulatory palliative care team, the advanced practice pharmacist has engaged the community pharmacist as part of the broader palliative care team. There are challenges and opportunities for pharmacists to assist in providing improved palliative care services delivery within the Australian healthcare system. [ABSTRACT FROM AUTHOR]