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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]

Background: This paper aimed to describe the legal worries of Australian general practitioners (GPs) and nurses regarding end-of-life care provided in the aged care setting. Methods: An analysis of responses to the final, open-ended question of a cross-sectional online survey of GPs and nurses practising in aged care settings in Queensland, New South Wales and Victoria was undertaken. Results: Of the 162 GPs and 61 nurses who gave valid responses to the survey, 92% (151 GPs and 55 nurses) responded to the open-ended question. Participants identified concerns across all relevant areas of end-of-life law. The most common concerns were substitute decision-makers or family member(s) wanting to overrule an Advance Care Directive, requests for futile or non-beneficial treatment and conflict about end-of-life decision-making. Participants often also identified concerns about their lack of legal knowledge and their fear of law or risk related to both end-of-life care generally and providing medication that may hasten death. Conclusions: Australian GPs and nurses working in aged care have broad-ranging legal concerns about providing end-of-life care. Legal concerns and knowledge gaps identified here highlight priority areas for future training of the aged care workforce. The law supports good end-of-life clinical practice by facilitating health care that aligns with the values and goals of patients, including those residing in residential aged care facilities. GPs and nurses here reported broad-ranging legal concerns relevant to providing end-of-life care within aged care, including substitute decision makers/family members wanting to overrule Advance Care Directives, requests for futile or non-beneficial treatment and conflict about decision-making. Participants' concerns can inform end-of-life legal training for aged care GPs and nurses. [ABSTRACT FROM AUTHOR]

Objective The aim of the present study was to identify online resources community members may access to inform themselves about their legal duties and rights in end-of-life decision making. Methods Resource mapping identified online resources that members of the public in New South Wales, Victoria and Queensland are likely to identify, and assessed the ease or difficulty in locating them. Resources were then critically analysed for accessibility of language and format using the Patient Education Materials Assessment Tool (PEMAT). Results Identified resources differed considerably based on whether search terms identified by community members or experts were used. Most resources focused on advance directives, enduring powers of attorney and substitute decision making. Relatively few provided information about legal duties (e.g. powers and responsibilities of substitute decision makers) or resolving conflict with health practitioners. Accessibility (understandability and actionability) of resource content varied. Conclusions Although numerous resources on end-of-life law are available online, community members may not be able to identify relevant resources or find resource content accessible. What is known about the topic? Research on participation by patients in decision making about their treatment has focused primarily on medical rather than legal knowledge. What does this paper add? The present study investigated which online resources community members may access to inform themselves about the law on end-of-life decision making. The resources identified were analysed for ease of location and content accessibility. What are the implications for practitioners? Authors of online resources on end-of-life decision making should consider whether their resources can be: (1) identified by search terms used by the public; (2) understood by a general audience; and (3) readily used to promote reader action.

Advance care planning is increasingly common practice in contemporary health care for individuals living with a chronic condition. Currently, limited research has been conducted into how newly adopted legislation in Victoria, Australia, facilitates advance care planning. The purpose of this study was to explore the uptake of the Medical Treatment Planning and Decisions Act 2016 in the primary care setting. The study also aimed to explore barriers that allied health professionals encounter when practicing advance care planning with patients. Four interdisciplinary focus groups and two in-depth interviews with participants were conducted and thematically analysed using an interpretivist inquiry paradigm. Analysis revealed two key themes: promoting client wellbeing and scope of practice. The data suggest that advance care planning by allied health professionals in the primary care setting is limited. Focussing on enhancing clients' wellbeing was more important than the development of advanced care directives. Attempting to promote the wellbeing of patients may foster hesitation to commence advance care planning in primary care. This study demonstrated that knowledge of the fundamental legislative changes are evident among allied health professionals which provides a foundation for successful development of advance care planning post implementation of the new Act. Advance care planning is a contemporary practice in primary health care, whereby healthcare professionals and patients collaboratively plan for future care should an individual lose decision-making capacity. In March 2018, the Medical Treatment Planning and Decisions Act 2016 gave statutory recognition to advance care directives in Victoria, Australia. The results of this study explore how this legislation may aid allied health professionals to successfully practice advance care planning while granting the wishes of individuals living with a chronic condition. [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]

The Australian state of Victoria introduced new legislation regulating medical treatment and associated decision-making in March 2018. In this article we provide an overview of the new Medical Treatment Planning and Decisions Act 2016 (Vic) and compare it to the former (now repealed) Medical Treatment Act 1988 (Vic). Most substantially, the new Act provides for persons with relevant decision-making capacity to make decisions in advance regarding their potential future medical care, to take effect in the event they themselves do not have decision-making capacity. Prima facie, the new Act enshrines autonomy as the pre-eminent value underlying the state's approach to medical treatment decision-making and associated surrogate decision-making. However, we contend that the intention of the Act may not accord with implementation of the Act to date if members of the community are not aware of the Act's provisions or are not engaged in advance care planning. There is a need for further research, robust community advocacy, and wider engagement for the intention of the Act—the promotion of "precedent autonomy" in respect to surrogate medical treatment decision-making—to be fully realized. [ABSTRACT FROM AUTHOR]

Background: The community prevalence of advance care directives (ACD) is low despite known benefits of advance care planning for patients, families and health professionals. Aim: To determine the community prevalence of instructional and appointing ACD in New South Wales, Victoria and Queensland and factors associated with completion of these documents. Methods: A telephone survey of adults living in New South Wales, Victoria and Queensland (n = 1175) about completion of instructional ACD (making their own decisions about future healthcare) and appointing ACD (appointing another to decide). Quota sampling occurred based on population size by state, gender and age, with oversampling in smaller jurisdictions (Victoria and Queensland). Results: Overall response rate was 33%. Six per cent of respondents reported completing an instructional ACD while 12% reported completing an appointing ACD. Female gender, higher educational level, personal experience of a major health scare and being widowed were significant predictors of completing an instructional ACD. Older age, higher educational level and being widowed were significant predictors of completing an appointing ACD. Conclusions: Despite long‐standing efforts to increase advance care planning, community prevalence of ACD remains low, particularly for instructional ACD. This study found some different predictors for instructional ACD compared with appointing ACD, and also a potential role for experiential factors in triggering uptake. These findings suggest supplementing general community awareness campaigns with more nuanced and targeted efforts to improve ACD completion. [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]

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]

Aims and objectives: To identify factors that influence the engagement of Chinese Australians with advance care planning. Background: Despite the benefits of advance care planning, there is a low prevalence of advance care planning in the Chinese Australian community. Reasons for this are often cited as cultural considerations and taboos surrounding future medical planning and death; however, other logistical factors may also be important. Design: This qualitative study used a thematic analysis grounded theory approach to explore facilitators and barriers to engagement in advance care planning. Methods: Semistructured interviews were conducted in‐language (Mandarin or Cantonese) exploring the views of a purposive sample of 30 community‐dwelling older Chinese Australians within Victoria, Australia. Results: Three key themes were identified: knowledge of, attitudes towards and needs for undertaking advance care planning amongst the Chinese Australians. There was a low awareness of advance care planning amongst the participants and some confusion regarding the concept. Most participants reported positive attitudes towards advance care planning but acknowledged that others may be uncomfortable discussing death‐related topics. Participants would want to know the true status of their health and plan ahead in consultation with family members to reduce the burden on the family and suffering for themselves. Language was identified as the largest barrier to overcome to increase advance care planning awareness. In‐language materials and key support networks including GPs, family and Chinese community groups were identified as ideal forums for the promotion of advance care planning. Conclusions: The participants of this study were open to conversations regarding future medical planning and end‐of‐life care, suggesting the low uptake of advance care planning amongst Chinese Australians is not culturally motivated but may be due a lack of knowledge relating to advance care planning. Relevance to clinical practice: The results highlight the need to provide access to appropriate in‐language advance care planning resources and promotion of advance care planning across the Chinese community. [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]

The purpose of this retrospective, cross-sectional study was to determine the prevalence of advance care planning (ACP) among older people presenting to an Emergency Department ( ED) from the community or a residential aged care facility. The study sample comprised 300 older people (aged 65+ years) presenting to three Victorian EDs in 2011. A total of 150 patients transferred from residential aged care to ED were randomly selected and then matched to 150 people who lived in the community and attended the ED by age, gender, reason for ED attendance and triage category on arrival. Overall prevalence of ACP was 13.3% ( n = 40/300); over one-quarter (26.6%, n = 40/150) of those presenting to the ED from residential aged care had a documented Advance Care Plan, compared to none (0%, n = 0/150) of the people from the community. There were no significant differences in the median ED length of stay, number of investigations and interventions undertaken in ED, time seen by a doctor or rate of hospital admission for those with an Advance Care Plan compared to those without. Those with a comorbidity of cerebrovascular disease or dementia and those assessed with impaired brain function were more likely to have a documented Advance Care Plan on arrival at ED. Length of hospital stay was shorter for those with an Advance Care Plan [median ( IQR) = 3 days (2-6) vs. 6 days (2-10), P = 0.027] and readmission lower (0% vs. 13.7%). In conclusion, older people from the community transferred to ED were unlikely to have a documented Advance Care Plan. Those from residential aged care who were cognitively impaired more frequently had an Advance Care Plan. In the ED, decisions of care did not appear to be influenced by the presence or absence of Advance Care Plans, but length of hospital admission was shorter for those with an Advance Care Plan. [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.

blackford j. & street a. (2012) Is an advance care planning model feasible in community palliative care? A multi-site action research approach. Journal of Advanced Nursing 68(9), 2021-2033. Abstract Aim. This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services. Background. An effective advance care planning programme involves an organizational wide commitment and preparedness for health service reform to embed advance care planning into routine practice. Internationally, such programmes have been implemented predominantly in aged and acute care with more recent work in primary care. Methods. A multi-site action research was conducted over a 16-month period in 2007-2009 with three Victorian community palliative care services. Using mixed method data collection strategies to assess feasibility, we conducted a baseline audit of staff and clients; analysed relevant documents (client records, policies, procedures and quality improvement strategies) pre-implementation and post-implementation and conducted key informant interviews ( n = 9). Settings and participants. Three community palliative care services: one regional and two metropolitan services in Victoria, Australia. Results. The services demonstrated that it was feasible to embed the Model into their organizational structures. Advance care planning conversations and involvement of family was an important outcome measure rather than completion rate of advance care planning documents in community settings. Services adapted and applied their own concept of community, which widened the impact of the Model. Changes to quality audit processes were essential to consolidate the Model into routine palliative care practice. Conclusion. An advance care planning model is feasible for community palliative care services. Quality audit processes are an essential component of the Model with documentation of advance care planning discussion established as an important outcome measure. [ABSTRACT FROM AUTHOR]

Aims and objectives. The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care. Background. Internationally, advance care planning programmes usually measure success by completion rate of advance directives or plans. This outcome measure provides little information to assist nurse managers to embed advance care planning into usual care and measure their performance and quality over time. An evaluation tool was developed to address this need in Australian community palliative care services. Design. Multisite action research approach. Methods. Three community palliative care services located in Victoria, Australia, participated. Qualitative and quantitative data collection strategies were used to develop the Advance Care Planning-Service Evaluation Tool. Results. The Advance Care Planning-Service Evaluation Tool identified advance care planning progress over time across three stages of Establishment, Consolidation and Sustainability within previously established Model domains of governance, documentation, practice, education, quality improvement and community engagement. The tool was used by nurses either as a peer-assessment or self-assessment tool that assisted services to track their implementation progress as well as plan further change strategies. Conclusion. The Advance Care Planning-Service Evaluation Tool was useful to nurse managers in community palliative care. It provided a clear outline of service progress, level of achievement and provided clear direction for planning future changes. Relevance to clinical practice. The Advance Care Planning-Service Evaluation Tool enables nurses in community palliative care to monitor, evaluate and plan quality improvement of their advance care planning model to improve end-of-life care. As the tool describes generic healthcare processes, there is potential transferability of the tool to other types of services. [ABSTRACT FROM AUTHOR]