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Objectives: The objectives of this study were to examine the roles and needs of allied health professionals (AHPs) working in public healthcare settings in rural and regional Victoria, Australia in providing components of palliative care in their routine practice. Methods: A cross-sectional study was conducted between March and May 2023. Surveys were collected from AHPs working in public healthcare settings in the Loddon Mallee region of Victoria, Australia. Clinicians reported on the frequency of provision of care to patients with terminal illness, and their self-reported skill and confidence in providing interventions to patients with palliative care needs. Results: In total, 121 clinicians completed the survey. Almost every respondent reported they had provided care to patients with a terminal illness, with 41% of clinicians providing this care daily or weekly. The respondents were confident carrying out generalist interventions such as maintaining physical function but reported lower confidence in managing common symptoms of terminal illness such as loss of appetite, swallowing difficulties and changing communication needs. Two-thirds of respondents had not undertaken any training specific to palliative care, with many unaware of how to access palliative care-specific training. Conclusion: AHPs in rural and remote areas regularly provide care to patients with terminal illness. As the number of patients seen in non-specialist palliative care settings is likely to increase in rural and regional areas, the low self-reported confidence in providing common components of care, and the low uptake of palliative care-specific training must be addressed to ensure AHPs can provide high-quality care to people with terminal illness. What is known about the topic? Due to the increasing demand for palliative care services, this care is increasingly delivered by general non-specialist clinicians such as allied health professionals. What does this paper add? This study provides evidence for how often a surveyed population of allied health professionals in rural and regional Australia are providing care to people with a terminal illness, as well as their confidence, competence and learning needs. What are the implications for practitioners? High-quality care is needed at end-of-life, therefore rural and regional health services need to support allied health professionals to increase confidence and competence in providing palliative care. [ABSTRACT FROM AUTHOR]

Objectives: Integrated respiratory and palliative care services for people with advanced lung disease provide disease-orientated care until the end of life, alongside symptom management and discussions about future care. This study aimed to explore patient, caregiver and general practitioner perspectives of an integrated respiratory and palliative care service, to understand which components of the service were considered valued and effective. Methods: We approached patients, caregivers and general practitioners, to participate in semi-structured phone interviews. A grounded theory approach guided data collection and qualitative analysis. Results: Between July and December 2019, 10 patients, eight caregivers and five general practitioners completed interviews. The overarching theme was that of valuing integrated care – the provision of disease-orientated care along with palliative care. Four other major themes emerged: Valuing communication and engagement between patient, caregiver and healthcare professionals – who spoke of 'growing this plan together'; the delivery of person-centred care – where physicians 'actually listen and you are not treated like a number'; the reality of action plan use in serious illness – while many found plans 'certainly' do help, others described when they were simply 'too ill to do the action plan'; and finally, divergent preferences for discussions about future care – while some patients felt this subject was 'better left alone', caregivers consistently reported their preference was to 'make a plan.' Conclusion: Consumer perspectives highlight the service was valued for delivering personalised care with high communication standards. Similar services should appreciate the usefulness and limitations of action plan use in advanced lung disease, and be sensitive to potential diverging preferences of the patient and caregiver when discussing future care. What is known about the topic? Integrated respiratory and palliative care services for people with advanced lung disease may improve quality of life and decrease acute healthcare utilisation and cost. What does this paper add? This paper adds to our understanding of patients', caregivers' and general practitioners' perspectives of this integrated care model. Participants highly valued this integrated service for providing person-centred care. Participants outlined both the effectiveness and limitations of action plan use in advanced lung disease, and of diverging preferences between patients and caregivers for discussions about future care. What are the implications for practitioners? The integration of disease-orientated care along with the provision of palliative care is highly valued from a consumer perspective. [ABSTRACT FROM AUTHOR]

Many submissions made by individuals to an Australian Parliamentary inquiry into end-of-life care which supported assisted dying used narratives of bad deaths of family or friends, or included stories by people suffering from chronic terminal illness. The submissions used the emotional tugs (pathos) of these narratives to support their case and to highlight the contemporary weaknesses of end-of-life care. This paper analyses the submissions, showing how pathos-based arguments were used in the public debate. Pathos-based arguments are a significant – and potentially very influential – feature in the debate on assisted dying. This paper also analyses the arguments advanced by proponents of assisted dying to show the weaknesses of Victoria's current arrangements for end-of-life care, including the significant suffering of family member or friends; lack of access to good palliative care; and that patient needs were not met, sometimes for religious or value-based reasons. [ABSTRACT FROM AUTHOR]

With the increased attention and demand on community‐based palliative and end‐of‐life (EOL) care services comes the question of how to ensure their sustainability. Sustainability has three key attributes: acceptability, affordability and adaptability. Having established the acceptability and affordability of the community‐based service, this paper focussed on adaptability, as the remaining issue affecting long‐term sustainability. The aim of this study was to identify components of the palliative and EOL service which require adaptability to ensure long‐term sustainability for the service. A mixed methods approach was used for this study. Semi‐structured interviews were conducted with family members. Semi‐structured focus groups and interviews were held with health professionals. Patient data were included to describe frequency and nature of contacts. The results were analysed using descriptive analysis. The setting was a rural town in Victoria, Australia. Nine family members were interviewed, and 16 health professionals were interviewed or took part in a focus group. Patient data included 121 participants. Four themes were identified: the uniqueness of the patient, workforce issues, collaboration between services and symptom and pain management. All themes indicated that the palliative and EOL service faces challenges which may threaten the sustainability of the service and require adaptability. Families regard palliative and EOL care as special and valued, and appreciate the endeavour, care and support taken to assist their loved one to die with dignity regardless of the location and setting. With sufficient attention paid to the adaptability of the service, community palliative and EOL care service can become more sustainable, thus offering choice and dignity for people approaching the end of life. [ABSTRACT FROM AUTHOR]

Multi-state models are useful for modelling disease progression where the state space of the process is used to represent the discrete disease status of subjects. Often, the disease process is only observed at clinical visits, and the schedule of these visits can depend on the disease status of patients. In such situations, the frequency and timing of observations may depend on transition times that are themselves unobserved in an interval-censored setting. There is a potential for bias if we model a disease process with informative observation times as a non-informative observation scheme with pre-specified examination times. In this paper, we develop a joint model for the disease and observation processes to ensure valid inference because the follow-up process may itself contain information about the disease process. The transitions for each subject are modelled using a Markov process, where bivariate subject-specific random effects are used to link the disease and observation models. Inference is based on a Bayesian framework, and we apply our joint model to the analysis of a large study examining functional decline trajectories of palliative care patients. [ABSTRACT FROM AUTHOR]

Over the past two decades in Australia, there has been significant change in the palliative care sector, the profile of the workforce and its educational requirements. This is reflective of worldwide developments, where educational aspects of palliative care have been integral to the development of service models. This paper describes a project undertaken by the Department of Health in Victoria Australia, to redirect its educational funding towards clinical scholarships to enable clinicians to undertake postgraduate academic studies. The aim of this project was to assess the impact of the Clinical Scholarship Program funding for recipients who undertook postgraduate studies in palliative care. As part of quality assurance, an online survey was distributed to Scholarship recipients across 2 cohorts spanning the years 2008-2010. Recipients were surveyed for the impact and outcomes of their participation in the program. Twenty one-year scholarships for each year (2008-2010), were available to medical, nursing, and allied health professionals currently working in Victoria's public palliative care service system, undertaking postgraduate study in approved courses. Analysis of the data indicated that of most significance was the benefit to the individual, in terms of the impact of study on their professional and personal life and the low rates of employment turnover. Participants also indicated their improved capacity to provide high-quality palliative care services. For the Department of Health this small investment has demonstrated great benefit; and for the palliative care sector it achieved a significant impact enabling an increase in educational opportunities to enhance capacity and capability of the workforce. [ABSTRACT FROM AUTHOR]

Background: Staff working in community palliative care services are accustomed to the intimate conversations that a patient being at home can engender. Being at home can provide a safe space for a patient to express difficulties, including expressing a desire for hastened death. With the implementation of voluntary assisted dying in Victoria in mid-2019, palliative care services have needed to review and adapt policies and practices to incorporate this new procedure. While it was anticipated that a small percentage of people would request access to voluntary assisted dying, in the wake of such significant change, there were numerous implications for palliative care services to consider. This paper describes both the organisational and individual changes undertaken by one community-based palliative care service, in anticipation of legalised assistance in dying. The range of responses to the issues raised are discussed, in preparation for, and in the early days of, voluntary assisted dying. [ABSTRACT FROM AUTHOR]

This study explores and describes the state-wide needs of the first 1000 calls to the newly established Victorian Palliative Care Advice Service (PCAS). A retrospective analysis investigated calls from the Victorian general public (n = 618 calls) and healthcare professionals (n = 382 calls) to PCAS between 26 May 2020 and 24 October 2022. Caller demographics, disease type, reason for call, and perceived utility of service were described. Most calls were from members of the public (62%) and related to malignant conditions (41%). Regional/rural clients comprised 45% of all calls to the service, of which half (50%) were health professionals seeking advice on symptom management and medication. One-third (29.3%) of all calls from health professionals were escalated to a palliative care medical consultant. PCAS prevented calls to emergency services in 10% of cases, and 82% of callers reported their issue was 'very much' or 'completely' addressed by PCAS. PCAS was shown to be frequently used by the public and healthcare professionals supporting patients with advanced, life-limiting illnesses. The service provided a solution without requiring complex technology, delivering a rapid connection for consumers with specialist palliative care expertise that might otherwise be unavailable, particularly in regional areas. [ABSTRACT FROM AUTHOR]

The first Australian palliative care nurse practitioner (NP) was endorsed in 2003. In 2009 the Victoria Department of Health funded the development of the Victorian Palliative Care Nurse Practitioner Collaborative (VPCNPC). Its aim was to promote the NP role, develop resources, and provide education and mentorship to NPs, nurse practitioner candidates (NPCs), and health service managers. Four key objectives were developed: identify the demographic profile of palliative care NPCs in Victoria; develop an education curriculum and practical resources to support the training and education of palliative care NPCs and NPs; provide mentorship to NPs, NPCs, and service managers; and ensure effective communication with all key stakeholders. An NPC survey was also conducted to explore NPC demographics, models of care, the hours of study required for the role, the mentoring process, and education needs. This paper reports on the establishment o f the VPCNPC, the steps taken to achieve its objectives, and the results of the survey. The NP role in palliative care in Australia continues to evolve, and the VPCNPC provides a structure and resources to clearly articulate the benefits of the role to nursing and clinical services. [ABSTRACT FROM AUTHOR]

Purpose: Despite the benefits of palliative care (PC) in pancreatic cancer, little is known about patients who access PC. This observational study examines the characteristics of patients with pancreatic cancer at their first episode of PC. Methods: First-time, specialist PC episodes captured through the Palliative Care Outcomes Collaboration (PCOC), in Victoria, Australia between 2014 and 2020, for pancreatic cancer, were identified. Multivariable logistic regression analyses examined the impact of patient- and service-level characteristics on symptom burden (measured through patient-reported outcome measures and clinician-rated scores) at first PC episode. Results: Of 2890 eligible episodes, 45% began when the patient was deteriorating and 32% ended in death. High fatigue and appetite-related distress were most common. Generally, increasing age, higher performance status and more recent year of diagnosis predicted lower symptom burden. No significant differences were noted between symptom burden of regional/remote versus major city dwellers; however, only 11% of episodes recorded the patient as a regional/remote resident. A greater proportion of first episodes for non-English-speaking patients began when the patient was unstable, deteriorating or terminal, ended in death and were more likely to be associated with high family/carer problems. Community PC setting predicted high symptom burden, with the exception of pain. Conclusion: A large proportion of first-time specialist PC episodes in pancreatic cancer begin at a deteriorating phase and end in death, suggesting late access to PC. Timely referrals to community-based specialist PC, access in regional/remote areas, as well as development of culturally diverse support systems require further investigation. [ABSTRACT FROM AUTHOR]

Objectives: To report stage‐specific patterns of treatment and the influence of management and treatment type on survival rates for people newly diagnosed with small cell lung cancer (SCLC). Design: Cross‐sectional patterns of care study; analysis of data prospectively collected for the Victorian Lung Cancer Registry (VLCR). Setting, participants: All people diagnosed with SCLC in Victoria during 1 April 2011 – 18 December 2019. Main outcome measures: Stage‐specific management and treatment of people with SCLC; median survival time. Results: During 2011–19, 1006 people were diagnosed with SCLC (10.5% of all lung cancer diagnoses in Victoria); their median age was 69 years (interquartile range [IQR], 62–77 years), 429 were women (43%), and 921 were current or former smokers (92%). Clinical stage was defined for 896 people (89%; TNM stages I–III, 268 [30%]; TNM stage IV, 628 [70%]) and ECOG performance status at diagnosis for 663 (66%; 0 or 1, 489 [49%]; 2–4, 174 [17%]). The cases of 552 patients had been discussed at multidisciplinary meetings (55%), 377 people had received supportive care screening (37%), and 388 had been referred for palliative care (39%). Active treatment was received by 891 people (89%): chemotherapy, 843 (84%); radiotherapy, 460 (46%); chemotherapy and radiotherapy, 419 (42%); surgery, 23 (2%). Treatment had commenced within fourteen days of diagnosis for 632 of 875 patients (72%). Overall median survival time from diagnosis was 8.9 months (IQR, 4.2–16 months; stage I–III: 16.3 [IQR, 9.3–30] months; stage IV: 7.2 [IQR, 3.3–12] months). Multidisciplinary meeting presentation (hazard ratio [HR], 0.66; 95% CI, 0.58–0.77), multimodality treatment (HR, 0.42; 95% CI, 0.36–0.49), and chemotherapy within fourteen days of diagnosis (HR, 0.68; 95% CI, 0.48–0.94) were each associated with lower mortality during follow‐up. Conclusion: Rates of supportive care screening, multidisciplinary meeting evaluation, and palliative care referral for people with SCLC could be improved. A national registry of SCLC‐specific management and outcomes data could improve the quality and safety of care. [ABSTRACT FROM AUTHOR]

We have little knowledge of differences in end‐of‐life care between home settings and residential aged care facilities (RACFs) where people spend most of their last year of life. This study aimed to compare end‐of‐life care between home settings and RACFs from the perspective of Australian general practitioners (GPs). A descriptive study was conducted with 62 GPs from Western Australia, Queensland and Victoria. Participants were asked to provide reports on end‐of‐life care of decedents in their practice using a validated clinic‐based data collection process developed by our team between September 2018 and August 2019. Of the 213 reported expected deaths, 66.2% mainly lived at home in the last year of life. People living at home were more likely to die at a younger age (median 77 vs. 88, p < 0.001), to be male (51.1% vs. 33.3%, p = 0.01) and to die of cancer (53.9% vs. 4.2%, p < 0.001) compared to those in RACFs. There were no significant differences between the two patient groups for seven out of the eight assessed symptoms, except nausea. GPs' perceived roles in caring for patients and levels of their involvement in provision of common palliative care services were comparable between the two groups. The usual accommodation setting was most frequently considered the preferred place of death in both groups. However, more home residents ended up dying in hospital compared to RACF residents. There were significantly higher frequencies of end‐of‐life discussions (ORs ranged 5.46–9.82 for all topic comparisons) with GPs associated with people living at home versus RACFs. One opportunity for improved care is through promoting greater involvement of GPs in end‐of‐life discussions with RACF residents and staff. In general, more Australians could potentially remain at home until death if provided with greater access to essential specialist palliative care services and supportive services in home settings. [ABSTRACT FROM AUTHOR]

Background: Voluntary assisted dying is lawful in Victoria in limited circumstances and commences in Western Australia in mid‐2021. There is evidence that in rare cases, unlawful assisted dying practices occur in Australia. Aims: To determine whether assisted dying practices occurred in Victoria in the 12 months prior to the commencement of the Voluntary Assisted Dying Act 2017 (Vic) ('VAD Act'), and to examine features of any identified cases. Methods: Exploratory case series of adult patients in Victoria who died between May 2018 and 18 June 2019 as a result of medication administered with the primary intention of hastening death. Cases were identified from a self‐administered survey about medical end‐of‐life decisions for adult patients, completed by Victorian specialists treating adults at the end of life. We examined reported use of medication with the primary intention of hastening the patient's death; characteristics of assisted dying cases, including doctors' classification of such practices. Results: Nine cases met the inclusion criteria. Death did not occur immediately after providing medication with the intention of hastening death. In eight cases, it was framed as palliative or terminal sedation and/or continuous deep sedation. Most doctors used language that distanced their practices from assisted dying. Conclusions: Unlawful assisted dying practices seem to have occurred in a small number of deaths in Victoria prior to commencement of the VAD Act. These practices typically occurred within the context of palliative or terminal sedation and may be difficult to distinguish from lawful palliative care practice. Some survey responses possibly reflect ambiguity in doctors' intentions when providing medication. [ABSTRACT FROM AUTHOR]

Background: In November 2017, the Victorian Voluntary Assisted Dying (VAD) Act was passed enabling people with a progressive terminal illness to end their life voluntarily. Heated debate abounded including, to some extent within palliative care, which was also challenged with developing processes around the legislation enactment. Aim: In response, the lead author convened a series of meetings of palliative care physicians to: (i) share ideas about preparations being undertaken within services; and (ii) re‐establish professional cohesion following the divide that the legislation had presented. Methods: A series of three closed meetings were held between the legislation passage and its implementation, with all Victorian palliative care physicians invited to attend. Meetings were facilitated by an experienced psychiatrist from outside the field. Results: These meetings proved very valuable as physicians collectively sought to define and respond to challenges, simultaneously reflecting on the personal and professional implications for individuals and the field. Key areas raised including gauging institutional 'readiness' for the legislation through staff surveys; the educational role of palliative care staff of the legislation implications; communication skills training; the role (if any) of palliative care in the processes of VAD; and the perceptions of palliative care itself in health services and the community. It was during the processes of discussing challenges and sharing solutions that the attendees appeared to reaffirm their professional interconnections. Conclusion: A description of the key elements of these discussions may be useful to others who may yet face similar circumstances with the introduction of VAD legislation. [ABSTRACT FROM AUTHOR]

Background: In the Australian state of Victoria, specialist doctors are central to the operation of voluntary assisted dying (VAD). However, a broad range of clinicians may be involved in the care of patients requesting or using VAD. Aims: To describe levels of support for and willingness to be involved in VAD and consider factors associated with clinician support for the VAD legislation and physicians' willingness to provide VAD in practice. Methods: A multisite, cross‐sectional survey of clinicians in seven Victorian hospitals. All clinicians were invited to complete an online survey measuring demographic characteristics, awareness of and support for the VAD legislation, willingness to participate in VAD related activities and reasons for willingness or unwillingness to participate in VAD. Results: Of 5690 who opened the survey, 5159 (90.1%) were included in the final sample and 73% (n = 3768) supported the VAD legislation. The strongest predictor of support for the VAD legislation was clinical role. Forty percent (n = 238) of medical specialists indicated they would be willing to participate in either the VAD consulting or coordinating role. Doctors did not differ in willingness between high impact (44%) and low impact specialty (41%); however, doctors specialising in palliative care or geriatric medicine were significantly less willing to participate (27%). Conclusion: Approximately 73% of surveyed staff supported Victoria's VAD legislation. However, only a minority of medical specialists reported willingness to participate in VAD, suggesting potential access issues for patients requesting VAD in accordance with the legal requirements in Victoria. [ABSTRACT FROM AUTHOR]

Background: COVID-19 has led to implementation of wide-ranging social restriction measures with consequent impact on health care utilisation in many domains. There is little published data on the experience of palliative care services catering to a population with low case numbers of COVID-19. Aim: This study aimed to consider the impact of COVID-19 on utilisation of inpatient palliative care in the context of low community transmission, and low numbers of cases in hospital. Design: A retrospective service evaluation examining differences in number of admissions, diagnoses, number of deaths and time from admission to death, across three discrete 8-week time periods spanning the early COVID-19 pandemic. Setting/participants: All admissions (n = 194) to a metropolitan tertiary hospital inpatient palliative care unit in Melbourne during the study period. Results: An initial 16.9% fall in admissions was followed by a return to baseline admission numbers, with a 46.7% increase in number of deaths compared to baseline. The number of deaths within 24 h rose from 10.8% to 37.3% (p < 0.01). The number of patients with non-malignant diagnoses increased from 32.4% to 52%, and those with non-malignant diagnoses were more likely to die rapidly (p < 0.01). There were no patients with COVID-19 infection. Conclusion: Increased numbers of deaths within 24 h of admission occurred on the palliative care unit despite low COVID-19 case numbers in the wider community, and in the setting of widespread social restriction measures. More research is needed examining the health-related consequences of such restrictions for individuals not infected with COVID-19. [ABSTRACT FROM AUTHOR]

Background: The Responding to Urgency of Need in Palliative Care (RUN-PC) Triage Tool is a novel, evidence-based tool by which specialist palliative care services can manage waiting lists and workflow by prioritising access to care for those patients with the most pressing needs in an equitable, efficient and transparent manner. Aim: This study aimed to establish the intra- and inter-rater reliability, and convergent validity of the RUN-PC Triage Tool and generate recommended response times. Design: An online survey of palliative care intake officers applying the RUN-PC Triage Tool to a series of 49 real clinical vignettes was assessed against a reference standard: a postal survey of expert palliative care clinicians ranking the same vignettes in order of urgency. Setting/Participants: Intake officers (n = 28) with a minimum of 2 years palliative care experience and expert clinicians (n = 32) with a minimum of 10 years palliative care experience were recruited from inpatient, hospital consultation and community palliative care services across metropolitan and regional Victoria, Australia. Results: The RUN-PC Triage Tool has good intra- and inter-rater reliability in inpatient, hospital consultation and community palliative care settings (Intraclass Correlation Coefficients ranged from 0.61 to 0.74), and moderate to good correlation to expert opinion used as a reference standard (Kendall's Tau rank correlation coefficients ranged from 0.68 to 0.83). Conclusion: The RUN-PC Triage Tool appears to be a reliable and valid tool for the prioritisation of patients referred to specialist inpatient, hospital consultation and community palliative care services. [ABSTRACT FROM AUTHOR]

Background: Couples who receive a prenatal diagnosis of a fetal anomaly in Victoria, Australia, are generally offered a choice about whether or not to continue with the pregnancy. When a severe or 'lethal' abnormality is diagnosed, some couples decide to continue the pregnancy in the knowledge that their baby may die before or shortly after birth. Several Australian parents who published personal accounts of that experience describe a lack of clear clinical pathways, suggesting those who decide to continue a pregnancy following a diagnosis of a 'lethal fetal abnormality' (LFA) may not be receiving optimal care. Aims: This study aimed to provide empirical Australian evidence of views and experiences of care provision from health professionals (HPs) and parents. Materials and Methods: Two sequential phases of this qualitative study purposively recruited a range of key HPs and parents. Semi‐structured interviews were thematically analysed. Results: Findings reveal that current care provision following prenatal diagnosis of an LFA is 'ad hoc' with both participant groups identifying disparities between parents' needs and available care. However, the goodwill and good intentions of all HPs involved was apparent. There was strong support from both groups for considering a model of perinatal palliative care (PPC) based on existing programs overseas. Conclusions: Future care provision in this setting needs to be redefined. A formal PPC program could ensure better and more consistent experiences of support for parents as well as the HPs working in the field. [ABSTRACT FROM AUTHOR]

Background: Doctors, particularly general practitioners, play a significant role in assisting patients to create advance care plans. When medically indicated, these documents are important tools to promote congruence between end-of-life care and patient's personal preferences. Despite this, little is known regarding the availability of these documents in hospitals. The aim of this study was to identify the proportion of people who died in hospital without an advance care plan and how many of these had advance care planning (ACP) documents in their general practice records. Methods: A retrospective cohort study was conducted of patient hospital records with manual linkage to general practice records. The large regional hospital in Victoria, Australia has a catchment population in excess of 300,000 people. The study sample was patients aged 75 years and over who died in the hospital between 1 January 2016 and 31 December 2017. The hospital records of these patients were examined to identify those which did not have a system alert for ACP documents on the file. Alerted ACP documents were limited to those legislated in the state of Victoria: advance care plan, Enduring Power of Attorney (Medical Treatment) or Enduring Power of Guardianship. Where no ACP document system alert was found in the hospital record, the patient's nominated general practice was consented to participate and the corresponding general practice record was examined. Data were analysed using descriptive statistics. Results: Of the 406 patients who died in hospital, 76.1% (309) did not have a system alert for any ACP document. Of the 309 hospital records without a system alert, 144 (46.7%) corresponding general practice records were examined. Of these, 14.6% included at least one ACP document, including four advance care plans, that were not available in hospital. Conclusions: Unless ACP documents are consistently communicated from general practice, patient's preferences may be unknown during end-of-life care. It is important that both doctors and patients are supported to use connected electronic health records to ensure that documents are readily available to healthcare staff when they are required. [ABSTRACT FROM AUTHOR]

Fibrotic interstitial lung disease (f‐ILD) has a guarded prognosis, and the goal of therapy in advanced‐stage disease should be symptom‐based. Despite this, patients may still undergo burdensome investigation at the end of life. A retrospective audit was performed on 67 patients who died from f‐ILD at the Royal Melbourne and Austin Hospitals between 2012 and 2016. Increased investigation burden was associated with lack of outpatient palliative care referral and documented advance care plan, and admission to a high‐dependency unit. Eighteen per cent of patients underwent ongoing investigations after the institution of comfort care. These findings highlight the unmet end‐of‐life care needs of people with f‐ILD. [ABSTRACT FROM AUTHOR]

Background: Cancer treatment near end of life is not likely to add meaningful benefit and minimising intervention rates has been promoted as an indicator of quality of care. Population‐based analysis of treatment allows comparative analysis of treatment rates and provides insight into patterns of care. Aims: To report a population‐based analysis of both radiotherapy and active systemic therapy (AST) delivery rates along with patterns of treatment within the last 14 and 30 days of life. Methods: The Evaluation of Cancer Outcomes Registry records clinical information on all newly diagnosed cancer patients for the Barwon South West Region of Victoria, Australia. Diagnosis details, tumour type and stage as well as core treatment details and date of death were extracted for all patients diagnosed from 2009 to 2015 inclusive. Results: A total of 12 760 cases cancers were recorded. The median age of all cases was 68.8, and 53% were male. AST was received by 3699 (29%) of patients and radiotherapy by 3811 (30%). Patient deaths within 14 and 30 days of treatment for AST were 4.3 and 8.7%, respectively, and deaths within 14 and 30 days of treatment for radiotherapy 3.8 and 8.0% respectively. Factors associated with death within 30 days of AST and/or radiotherapy were male gender, age greater than 70 years and higher disease stage (all P < 0.01). Treatment rates within 30 days of death were highest for lung cancer (23% of cases) and lowest for breast cancer (2% of cases). Conclusions: This population‐based analysis of AST and radiotherapy treatment within the last 30 days of life within a region of Australia has shown overall treatment rates below 10%. Treatment rates appear influenced by both patient and tumour characteristics. Future focus on subgroups with high rates of late intervention may help minimise treatment unlikely to add benefit. [ABSTRACT FROM AUTHOR]

Background: National guidelines and resources to support a palliative approach in residential aged care were designed to improve the provision of palliative and end-of-life care; however, implementation has been sporadic. Objective: To support implementation of a palliative approach in aged care using a facilitation training model and existing palliative approach toolkit resources. Methods: Organisation-wide educational intervention delivered by a specialised Palliative Approach Facilitator for 6 months. Training included palliative approach principles, advance care planning, clinical management, equipment use, case conferencing, care planning and self-care. Results: The intervention included 197 internal and external staff and reviewed advanced care plans for 484 clients. Increased staff knowledge and confidence with discussions involving advance care planning, end-of-life care and supporting bereaving families resulted. Conclusion: This targeted intervention addressed barriers to adoption of a palliative approach, representing a flexible training model for building workforce capacity, promoting quality improvement and sustaining best practice in aged care settings. [ABSTRACT FROM AUTHOR]

Background: Paramedics may be involved in the care of patients experiencing a health crisis associated with palliative care. However, little is known about the paramedic's role in the care of these patients. Aim: To describe the incidence and nature of cases attended by paramedics and the care provided where the reason for attendance was associated with a history of palliative care. Design: This is a retrospective cohort study. Setting/participants: Adult patients (aged >17 years) attended by paramedics in the Australian state of Victoria between 1 July 2015 and 30 June 2016 where terms associated with palliative care or end of life were recorded in the patient care record. Secondary transfers including inter-hospital transport cases were excluded. Results: A total of 4348 cases met inclusion criteria. Median age was 74 years (interquartile range 64–83). The most common paramedic assessments were 'respiratory' (20.1%), 'pain' (15.8%) and 'deceased' (7.9%); 74.4% (n = 3237) were transported, with the most common destination being a hospital (99.5%, n = 3221). Of those with pain as the primary impression, 359 (53.9%) received an analgesic, morphine, fentanyl or methoxyflurane, and 356 (99.2%) were transported following analgesic administration. Resuscitation was attempted in 98 (29.1%) of the 337 cases coded as cardiac arrest. Among non-transported cases, there were 105 (9.6%) cases where paramedics re-attended the patient within 24 h of the previous attendance. Conclusion: Paramedics have a significant role in caring for patients receiving palliative care. These results should inform the design of integrated systems of care that involve ambulance services in the planning and delivery of community-based palliative care. [ABSTRACT FROM AUTHOR]

Aim: To describe the clinical course for children with severe physical disability (SPD) in the 2 years prior to their death and to identify whether these children had palliative care involvement and advance care planning prior to death. To investigate whether there is a difference between children with progressive (PSPD) and non-progressive (NPSPD) aetiologies of SPD.Methods: A retrospective cohort analysis of 48 children with SPD who died between 1 January 2013 and 1 January 2015 at The Royal Children's Hospital, Melbourne. Clinical charts were reviewed to collect data about the type of SPD, frequency and duration of hospital admissions, duration of palliative care involvement (if any) and presence of an advance care plan.Results: The majority of children were admitted in the 6 months before their death, and over a third were admitted to the intensive care unit. There was a significant increase in the frequency of hospital admissions as the study cohort approached death (P = 0.003). The majority of children with SPD were offered a referral to a palliative care service, with referrals more likely in children with PSPD (90%) compared to children with NPSPD (57%). While approximately 60% of children in each cohort had an advance care plan, there was a trend towards this being formalised earlier in children with PSPD (P = 0.09).Conclusion: The increase in hospital admissions prior to death in children with SPD suggests an opportunity for greater consistency in offering advanced care planning and palliative care, especially to those with NPSPD. [ABSTRACT FROM AUTHOR]

Background: Pharmacists have a key role to play in optimisation of medication regimens and promotion of medication safety. The role of specialist pharmacists as part of the multidisciplinary palliative care team, especially in the primary care setting, is not widely recognised. Aim: To explore the perspectives of stakeholders about the gaps in the current model of community palliative care services in relation to medication management and to assess their opinions pertaining to the role of a specialist palliative care pharmacist in addressing some of those gaps. Design: Qualitative study utilising three focus groups involving 20 stakeholders. Thematic analysis was carried out using a framework approach and interpreted in the context of the Chronic Care Model for improving primary care for patients with chronic illness. Setting/Participants: Setting was a large regional Australian palliative care service. Participants included palliative care consumers and clinicians specifically patients, caregivers, physicians, nurses and pharmacists. Results: Five major themes emerged from the focus groups: access to resources, medicines and information; shared care; challenges of polypharmacy; informal caregiver needs and potential roles of a palliative care pharmacist. Gaps in access to medicines/resources, training for generalist practitioners, communication between treating teams and lack of support for patients and carers were cited as factors adversely impacting medication management in community-based palliative care. Conclusion: While community-based palliative care is an essential aspect of meeting the health care demands of an ageing society, the current model has several gaps and limitations. An appropriately qualified and skilled pharmacist within the palliative care team may help to address some of the gaps in relation to medication access and appropriateness. [ABSTRACT FROM AUTHOR]

Abstract: Background: Speech pathologists have a pivotal role in palliative care, assisting patients with swallowing and communication disorders, yet very little is known about the preparedness of speech pathologists to work in this field. Aims: To investigate the preparedness of speech pathologists for working in palliative care. The term ‘palliative care’ was viewed as an encompassing umbrella term incorporating the management/reduction of symptoms and improvement in a person's quality of life at any point of the disease progression. Methods & Procedures: Participants were Australian‐trained speech pathologists who provided adult palliative care services. An online questionnaire was used to gather both quantitative and qualitative data from practising speech pathologists. Qualitative data were analysed and interpreted using conventional content analysis. Descriptive statistics were analysed via the Statistical Package for the Social Sciences (SPSS) for Windows Version 22. Non‐parametric tests (chi‐square and Mann–Whitney U‐test) were used for further analysis. Outcomes & Results: The majority (70%) of participants indicated that their university training did not prepare them to practice in palliative care. Participants who received palliative care education at the tertiary level were significantly more prepared to work with palliative patients than those who had not; however, only a minority (27%) had received such training. Just over half (57%) reported having completed post‐university professional development in palliative care. The speech pathologist's role in palliative care was also highlighted, with speech pathologists outlining their contribution to the assessment of patients’ communication and swallowing abilities. In addition, recommendations for palliative care content to be incorporated into university curriculum were suggested. Conclusions & Implications: Speech pathologists can make important contributions to end‐of‐life care, but there is much scope for improving the availability and quality of university and post‐university palliative care training opportunities so that people receiving palliative care are best supported. [ABSTRACT FROM AUTHOR]

A recent administrative law decision in Victoria, Australia, applied double effect reasoning in a novel way. Double effect reasoning has hitherto been used to legitimate treatments which may shorten life but where the intent of treatment is pain relief. The situation reviewed by the Victorian tribunal went further, supporting actions where a doctor agrees to provide pentobarbitone (Nembutal) to a patient at some time in the future if the patient feels at that time that his pain is unbearable and he wants to end his life. The offer to provide the drug was described as a palliative treatment in that it gave reassurance and comfort to the patient. Double effect reasoning was extended in this instance to encompass potentially facilitating a patient’s death. This extension further muddies the murky double effect reasoning waters and creates another challenge to this concept. [ABSTRACT FROM AUTHOR]

This article attempts to examine and explore the change management process that was undertaken by the community palliative care service at Calvary Health Care Bethlehem, Australia, to challenge the historical practice of prescribing 'emergency subcutaneous medications' for all patients admitted to the service. It discusses how, using a team approach, change management was effectively facilitated to ultimately enhance service provision and consumer satisfaction. Literature (both national and international) was examined to identify the use of emergency medications in the community palliative care setting. The historical practice of all community palliative care patients being prescribed this medication within the Victoria region of Australia was tested, and concerns and misconceptions of staff and referrers were challenged in regards to this practice. Through working parties, descriptive surveys and staff evaluations, the use of the term 'emergency medication' was changed to 'anticipatory medication' with clear criteria for usage. Change was undertaken slowly and with continued collaboration of staff to ensure effectiveness. Staff survey results identified that the majority were satisfied with the change, and they considered there to be no impact on the quality of care that their patients were receiving. The natural progression of the project, which resulted in positive quantitative and qualitative results, was the facilitation of an education package for carers to educate them on giving subcutaneous medications to the patient. By undertaking change that was slow and methodical with clear communication to all, the community palliative care service was able to embed the changes into everyday practice, and the use of anticipatory medications within the Calvary Health Care Bethlehem community palliative care service is now understood, acknowledged, and adhered to by all staff. [ABSTRACT FROM AUTHOR]

Background There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of people with intellectual disabilities, particularly those in disability community living services. Methods A mixed-methods approach was used. Quantitative data were gathered through a survey of disability support staff working in government-managed community living services in the Australian state of Victoria. These quantitative data informed the collection of qualitative data through focus groups and research interviews. A public health palliative care framework provided the basis for developing an organizational change model from the consolidated data. Results There is a strong relationship between organizational structure and culture, and both influence end-of-life practice in community living services. Barriers to good practice arise from the differing attitudes of paid carers involved, and from uncoordinated approaches reflecting misaligned service systems in the disability and palliative care fields. Organizational reorientation is crucial to achieving sustainable change that will support healthy dying. Conclusions End-of-life care requires the collaboration of disability and palliative care services, but for care to achieve palliative care goals, the collaboration must be led by disability services. We outline here an organizational model we have developed from public health principles to manage end-of-life care in community living services. [ABSTRACT FROM AUTHOR]

The prevalence of dementia will continue to increase with the ageing of the population. Many people living with dementia will reach a stage where surrogate decision-makers-mostly family carers-will need to make a range of decisions on their behalf. The aim of this study was to learn from surrogate decision-makers how they can be most effectively supported in this role. The study employed a qualitative design using semi-structured face-to-face or telephone interviews with a purposive sample of 34 surrogate decision-makers of people living with dementia. Transcripts of participant interviews were reviewed using a thematic approach to analysis. Four main themes were identified from this analysis: needing greater community awareness of dementia and its impact; intervening early in cognitive decline; relying on health professionals for ongoing support; and seeking and using support from wherever is relevant for each person. Based on this analysis and a review of the literature, we propose a wholistic set of recommendations for the support of surrogate decision-makers. Healthcare professionals need to help family carers understand the likely trajectory of dementia, including the significance of surrogate decision-making. They can support the person living with dementia and their surrogates to undertake advance care planning and they can act as empathic guides during this process. Health and community care organisations need to provide a 'key worker' model wherever possible so that the person living with dementia and their surrogate decision-maker do not have to seek support from multiple staff members or organisations. Carer support programmes can routinely include information and resources about surrogate decision-making. Community and government organisations can help people prepare for the possibility of becoming surrogate decision-makers by promoting a greater public awareness and understanding of both dementia and advance care planning. [ABSTRACT FROM AUTHOR]

Choices in care during the end stages of life are limited by the lack of resources and access for rural people. Nursing advocacy based on the holistic understanding of people and their rural communities may increase the opportunity for choice and improve the quality of care for people living and dying at home. Pragmatism and nurse agency theory were used for a practical exploration of how district nurses successfully advocate for rural Australian end-of-life goals to begin the development of a practice model. In two stages of data collection, rural district nurse informants (N = 7) were given the opportunity to reflect on successful advocacy and to write about their experiences before undertaking further in-depth exploration in interviews. They defined successful advocacy as “caring” that empowers people in the “big and small” personal goals important for quality of life. The concepts described that enable successful advocacy were organized into a network with three main themes of “willing” investment in holistic person-centered care, “knowing” people and resources, and feeling “supported.” The thematic network description provides deep insight into the emotional skill and moral agency involved in successful end-of-life nurse advocacy and can be used as a sound basis for modeling and testing in future research. [ABSTRACT FROM AUTHOR]

Background: Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports. Aim: To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia. Design: Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework. Setting/participants: Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a ‘primary caregiver’ for one or more children and/or adolescents (⩽18 years) with a life-limiting condition. Results: Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents’ physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as ‘protector’, reporting acquired meaning and purpose. Conclusion: This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers. [ABSTRACT FROM AUTHOR]

The origins of contemporary public health approaches to palliative and end-of-life care can be traced to Victoria, Australia. The work of Allan Kellehear and the palliative care unit at La Trobe University proved seminal, and this continues to grow. But while the growth of compassionate communities continues internationally, both challenges and opportunities remain for communities in Australia. In this context, we discuss future directions for community engagement as a public health approach to palliative care. Drawing from examples of community activities and from the literature, we highlight the use of arts and social media as an emerging strength from which to build. Through the lens of positive education, we propose a positive paradigm for death education in schools to promote positive dying. The relevance and potential contribution of appreciative inquiry is then explored as an asset-based public health approach to support sustainable community development. Collective action towards these future directions will contribute to the continued flourishing of public health approaches to palliative care in Australia. [ABSTRACT FROM AUTHOR]

Objective: Many patients approaching death experience hopelessness, helplessness, and a depressed mood, and these factors can contribute to a difficult end-of-life (EoL) period. Biography services may assist patients in finding meaning and purpose at this time. The aim of our study was to investigate the lived experience of volunteers involved in a biography service in Melbourne, Australia, using a qualitative methodology.Method: The participants were 10 volunteers who had participated in a biography service within a private palliative care service. Each volunteer was interviewed separately using a study-specific semistructured interview guide. The transcripts of these interviews were then subjected to thematic analysis.Results: Analysis yielded the following themes: motivations for volunteering; dealing with death, dying, and existential issues; psychosocial benefits of volunteering; and benefits and challenges of working with patients and their families. Our results indicated that volunteering gave the volunteers a deeper appreciation of existential issues, and helped them to be more appreciative of their own lives and gain a deeper awareness of the struggles other people experience. They also suggested that volunteers felt that their involvement contributed to their own personal development, and was personally rewarding. Furthermore, the results highlighted that volunteers found that encounters with family members were sometimes challenging. While some were appreciative, others imposed time limits, became overly reliant on the volunteers, and were sometimes offended, hurt, and angered by what was included in the final biography.Significance Of Results: It is hoped that the findings of the current study will provide direction for improvements in the biography services that will benefit patients, family members, and volunteers. In particular, our findings highlight the need to provide ongoing support for volunteers to assist them in handling the challenges of volunteering in a palliative care setting. [ABSTRACT FROM AUTHOR]

Aims and objectives This study examined how nurses understand urinary problems at the end of life, and identified sources of evidence upon which they base their practice through semi-structured qualitative interviews. The aim was to decide whether research or interventions (such as formulation of best practice guidelines) could improve continence care at the end of life. Background There is little evidence in nursing literature to indicate how nurses should manage urinary problems at the end of life. Evidence is particularly lacking regarding the insertion of indwelling urinary catheters. Design This was an applied qualitative interview study which used the 'guided interview' approach. Methods Twelve participants who worked in two hospital wards and one hospice were interviewed about management of patients with urinary problems approaching the end of life. The transcribed interviews were organised using the qualitative analysis software qsr N Vivo version 10 (QSR International, Melbourne, Australia). Constant comparison was used to analyse the interviews. Results The patient and their family were a key concern of all interviewees. Participants focused on processes including: giving care, making decisions, managing uncertainty and assimilating knowledge. These processes are mediated by 'phronesis' or practical wisdom. Conclusions Within each of the processes (giving care, making decisions, managing uncertainty and assimilating knowledge), participants approached each patient as an individual, using experience, patient wishes, available resources, clinical knowledge and advice from colleagues to provide care. A generalised set of guidelines on managing urinary problems at the end of life would probably not be useful. Relevance to clinical practice There is uncertainty about what constitutes best practice in specific areas of continence care at the end of life such as indwelling urinary catheter insertion. A careful approach is needed to ensure that the intellectual and moral knowledge that constitutes practical wisdom is shared and developed throughout teams. [ABSTRACT FROM AUTHOR]

Background: Educational opportunities for professionals working with children requiring palliative care are central to future development within the specialty across countries. International educational initiatives involving a range of professionals are important for learning with and from others working within the field. Aim: to explore the experiences and value to students from participating in an international online discussion forum. Method: This article examines one such initiative; the use of an international asynchronous discussion forum with students in Melbourne, Australia and Belfast, UK who work with children and families. The innovation is examined and student perspectives of the forum's value are presented. Results: Students endorsed the value of the forum, identifying three main areas of learning: differences across locations within countries, respecting different views and being open, and need for continued learning within children's palliative care. The overarching theme 'we are not alone' supported the idea that participation in the international discussion forum enabled students to see a broader perspective. Ideas for future developments of similar forums are also explored. [ABSTRACT FROM AUTHOR]

The article discuses a study conducted to review the use of Supportive and Palliative Care Indicators Tool (SPICT) to define patients with a Life-Limiting Illness (LLI) and compares outcomes of rapid response teams (RRT) consultations. Topics discussed include complete study procedure, data analysis, strength and limitations of SPICT. It also discusses issues related to unnecessary interventions and ways to promote patient-centred care.

Renal nurses working in dialysis settings in Australian regional and rural locations face challenges in facilitating advance care planning (ACP) and providing quality physical and psychological symptom care at the end of life (EOL) for a growing population of older and sicker people with end-stage kidney disease (ESKD). Following concerns raised by patients, families, renal and palliative care nurses early in 2009 in one regional setting, gaps in service delivery were identified. These identified gaps were supported by an emerging literature that identified the need for integrated, palliative, supportive care earlier in the disease trajectory. This care, provided on a needs basis, incorporates ACP, and identifies and addresses complex symptom and psychological issues to improve quality of life (QOL) and planning EOL care for patients and their families/carers. This approach to care, now called renal supportive care, is in varying stages of implementation across Australia for all renal patients, predominantly in metropolitan centres. With limited financial resources, a successful multi-professional collaboration and coordinated approach was established in January 2009 in Ballarat, a large regional setting in Victoria. An implementation framework was developed, addressing the continuum of care from pre-dialysis to withdrawal/cessation from renal replacement therapy (RRT), with an integrated palliative supportive approach during active treatment or EOL care. This project has provided a step forward in improving confidence and responsibility for palliative care by renal nurses working in dialysis settings, helping them to address the challenges faced in evaluating symptom burden, facilitating ACP and delivery of quality EOL care for patients, their families and carers with ESKD. [ABSTRACT FROM AUTHOR]

For frail older people, admission to hospital is an opportunity to review the indications for specific medications. This research investigates prescribing for 206 older people discharged into residential aged care facilities from 11 acute care hospitals in Australia. Patients had multiple comorbidities (mean 6), high levels of dependency, and were prescribed a mean of 7.2 regular medications at admission to hospital and 8.1 medications on discharge, with hyper-polypharmacy (≥10 drugs) increasing from 24.3% to 32.5%. Many drugs were preventive medications whose time until benefit was likely to exceed the expected lifespan. In summary, frail patients continue to be exposed to extensive polypharmacy and medications with uncertain risk-benefit ratio. [ABSTRACT FROM AUTHOR]