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Background: There is limited literature around how palliative care organizations determine the degree to which they will interface with voluntary assisted dying in jurisdictions where it is legal. The aim of this research was to describe the experience of the board of management of an Australian community-based hospice during their decision-making process around whether to support voluntary assisted dying in the facility, prior to the legislation coming into operation. Methods: The Board considered this decision over ten meetings in 2020, during which time they received information on the legislation, relevant literature, feedback from workshops which included the community, comment from hospice founders, staff survey results and presentations by clinicians able to discuss the impact of voluntary assisted dying on palliative care services. Members were encouraged to make notes of their own experiences during this time. Following this, semi-structured interviews were conducted with seven of the nine board members. Interviews were audio-recorded and transcribed verbatim and analysed using conventional qualitative content analysis method. Results: The board members experienced a sense of journey in reaching an overall decision, which was to allow full participation in voluntary assisted dying provision for inpatients. Themes based on the journey motif included: starting from a personal view; moving to a hospice perspective; exploring if voluntary assisted dying can be part of end-of-life care; awareness and assessment of risks to the Hospice; arriving at a common platform to vote on; factors facilitating a safe decision-making journey; and personal impact of the journey. Conclusions: The group highlighted several facilitators of a successful outcome including having adequate time, the availability of useful resources, sound board processes and a trusting culture. The study may provide support to other healthcare organisations as they face similar decisions triggered by legislative change. [ABSTRACT FROM AUTHOR]

Background: Models of care that increase specialist medical services to regional or remote patients are being explored worldwide. Many of the models include telehealth (also called telemedicine or video‐conferencing consultations) alone or in combination with traditional face‐to‐face clinic visits. Aim: To report the experience of patients using telehealth consultation and costs associated with delivering the service in a Regional Cancer Centre over a 12‐month period. Methods: Patients attending a Great Southern haematology clinic between September 2018 and July 2019 were invited to complete a brief questionnaire about their demographic and diagnosis details. Those attending a telehealth clinic were invited to complete a Tele‐Haematology Satisfaction Questionnaire and invited to participate in a face‐to‐face interview regarding their general experiences and thoughts related to telehealth and face‐to‐face consultations. Occasions of service costs and direct hospital expenses were provided by the central health service's telehealth office. Results: The use of telehealth alone or as part of a mixed model was acceptable and convenient for most patients. In addition, high levels of satisfaction were reported including improved access to specialist services, reduced travel time and an ease of use of the telehealth system. The total cost saving was A$308 per occasion of service. Conclusions: The present study demonstrated that the model was effective in providing outpatient services and cost effective to the health service, while being experienced as a satisfactory model by patients. [ABSTRACT FROM AUTHOR]

Background: There is a lack of research to guide the implementation of voluntary assisted dying legislation within a hospice setting. Furthermore, there is limited published information related to the expectations of the community and staff to assist decision making regarding voluntary assisted dying in a community hospice. The aim of this study was to explore the expectations of staff, volunteers and members of the community as how a rural Australian community hospice could respond in relation to imminent enactment of Voluntary Assisted Dying legislation. Methods: A total of 63 Hospice staff and volunteers and community members participated in 11 workshops. This qualitative study used the interpretive description method to analyse the workshop transcripts. Results: While there was not a consensus view on community expectation, there was agreement among the participants for respect for a patient's individuality and choices. Furthermore, care offered in hospice needs to remain non-judgemental and patient focused regardless of whether voluntary assisted dying policy was implemented or not. Both opportunities and risks associated with implementation were identified by the participants. Conclusion: There was common ground around the respect for the dying person and the ideal of a "safe place" despite opposing views on what this may mean in practice. There is a need for clarity in organisational responses around policy, risk management, education, and staff support. [ABSTRACT FROM AUTHOR]

Context: Previous work has found that facilitated advance care planning (ACP) interventions are effective in increasing ACP uptake among patients with severe respiratory disease.Objectives: The objective of this study was to investigate whether a nurse-led, facilitated ACP intervention among participants with severe respiratory disease impacts self-reported or clinical outcomes.Methods: A multicenter, open-label, patient-preference, randomized controlled trial of a nurse-led facilitated ACP intervention was performed. Outcome measures included self-report scales (health care satisfaction and EQ-5D-5L health-related quality of life at three- and six-month follow-up), 12-month mortality, and health care utilization during the final 90 days of life.Results: One hundred forty-nine participants were recruited across two study settings (metropolitan tertiary hospital respiratory department and rural sites) and 106 were allocated to receive the ACP intervention. There was no effect of the intervention on satisfaction with health care, health-related quality of life, or 12-month mortality rates. Among those participants who died during the follow-up period (N = 54), those allocated to the ACP intervention had significantly fewer outpatient consultations (7.51 vs. 13.6, P < 0.001). There were no changes in emergency department attendances, total hospital admissions or length of stay, or home nursing visits. Among those allocated to the ACP intervention, there was a reduced length of stay in acute hospital settings (7.76 vs. 11.5 nights, P < 0.001) and increased length of stay in palliative hospital settings (5.54 vs. 2.08, P < 0.001) during the final 90 days of life.Conclusion: A facilitated ACP intervention among patients with severe respiratory disease did not have an impact on satisfaction, health-related quality of life, or 12-month mortality rate. Facilitated ACP may be associated with a different type of health care utilization during the end-of-life period. [ABSTRACT FROM AUTHOR]

As our population ages, there will be an increasing number of patients with life-limiting disease who may be referred for major elective surgery and more pressingly may present acutely, requiring major emergency surgical intervention. Owing to the high risk of perioperative and postoperative complications associated this group of patients, it is paramount that specific advance care planning that encompasses a patient's goals of care and resuscitative status be clarified before undergoing surgery in this acute period. In doing so, this will lead to a better quality of life for patients with a limited trajectory and allow for more informed decisions to be made about their health care. Furthermore, it will help to prevent futile and inappropriate treatments that do not respect a patient's wishes and their clinical status. In this case discussion, we explore the key themes about the challenge of perioperative advance care planning for patients with life-limiting disease and provide a framework to help guide conversation in this crucial period. [ABSTRACT FROM AUTHOR]

Problem: Despite acknowledged benefits, the impact of advance care planning on usual care is inconsistent. Design: Quality improvement study. Setting: A Western Australian regional hospital. Key measures for improvement: This project aimed to create a system for storing, accessing and incorporating advance care planning documents in clinical care. Strategies for change: Interventions over 18 months addressed four areas: medical records processes for receiving and processing advance care planning documents; information technology solutions for electronic storage and alerts; clerical staff duties in regards advance care planning documents; and clinician education. Effects of change: There was a 12‐fold increase in advance care planning documents stored electronically and 100% of audited notes had correct filing of advance care planning documents with an alert in place at follow‐up audit. Clinician recognition of the presence of an advance care planning document improved. Detailed examples of interventions are described. Lessons learnt: Repeated exposure to different forms of advance care planning education, in conjunction with simple but effective system changes can make a difference in changing established hospital practice. Final impact of these changes on end‐of‐life care requires further audit. [ABSTRACT FROM AUTHOR]

Objective To provide a current perspective on end-of-life ( EOL) care in regional Western Australia, with a particular focus on the final admission prior to death and the presence of documented advance care planning ( ACP). Design Retrospective medical notes audit. Setting One regional hospital (including colocated hospice) and four small rural hospitals in the Great Southern region of Western Australia. Participants Ninety recently deceased patients, who died in hospitals in the region. Fifty consecutive patients from the regional hospital and 10 consecutive patients from each of the four rural hospitals were included in the audit. Interventions A retrospective medical notes audit was undertaken. Main outcome measures A 94-item audit tool assessed patient demographics, primary diagnosis, family support, status on admission and presence of documented ACP. Detailed items described the clinical care delivered during the final admission, including communication with family, referral to palliative care, transfers, medical investigations, medical treatments and use of EOL care pathways. Results Fifty-two per cent were women; median age was 82 years old. Forty per cent died of malignancy. Median length of stay was 7 days. Thirty-nine per cent had formal or informal ACP documented. Rural hospitals performed comparably with the regional hospital on all measures. Conclusions This study provides benchmarking information that can assist other rural hospitals and suggests ongoing work on optimal methods of measuring quality in EOL care. [ABSTRACT FROM AUTHOR]

Although the progressive clinical trajectory of motor neurone disease (MND) is widely understood, multiple challenges remain preventing optimal end-of-life care for this population with unique needs from the patient, carer and service provider perspectives. This paper reports on the experiences, gaps in service and unmet needs of MND patients and family carers and explores public health palliative care approaches that would facilitate coordinated and integrated care to respond to their changing needs. This is a qualitative study of responses to questions in an online consumer survey (353 respondents) in Western Australia (2020), focusing on a subset of 29 current and bereaved carers of people with MND who have used health services in the last five years. The analysis identified themes, highlighting the insufficient integration of services across health and social care; poor and unequal access to coordinated palliative care; significant gaps in the knowledge base of the workforce and a failure to meet the consumer expectations of person-centred care. For palliative care to be accessible to those living with MND and other under-served conditions, there needs to be a shift to more comprehensive, inclusive and sustainable options, such as the public health approach to palliative/end-of-life care that engages the assets of local communities in partnership with health services, one example being the "Compassionate Communities Connectors" model of care. Further considerations include advocacy for policy changes, fostering partnerships and developing indicators for evaluating the impact of the proposed models of care. The end result is not only better care but substantial savings for the health system. [ABSTRACT FROM AUTHOR]

Abstract: Fatigue is very common in patients with cancer. Current guidelines suggest that psychostimulants are “reasonable to consider for severe fatigue.” This randomized, double-blind, placebo-controlled trial investigated the hypothesis that dexamphetamine in fatigued patients with advanced cancer would produce a clinically significant improvement with minimal side effects. Fifty patients with advanced cancer, who were receiving palliative care, were randomized to dexamphetamine 10mg twice daily or placebo for eight days. Effectiveness was assessed using the Brief Fatigue Inventory and the McGill Quality-of-Life Questionnaire. The side effects were recorded. The results were analyzed on an intention-to-treat basis. The baseline demographics, fatigue levels, and quality-of-life scores were similar between the two arms. Patients were elderly, had impaired performance status (Eastern Cooperative Oncology Group score=3), and were taking a range of neurologically active medications. Thirty-nine patients completed the trial. There was a transient improvement in the fatigue levels on day 2, but no significant difference in fatigue (P =0.267) or quality of life (P =0.579) by the end of the study. Statistical modeling did not reveal any significant predictors of response to dexamphetamine. These results suggest that dexamphetamine 20mg daily, although well tolerated, does not significantly improve fatigue or quality of life in patients with advanced cancer, as measured by the selected instruments. [Copyright &y& Elsevier]

OBJECTIVES: A two-phase study was conducted to refine a version of Cleeland's Brief Pain Inventory (BPI, Short Form) for use in residential aged care facilities (RACFs). DESIGN: The Australian Pain Society modified Cleeland's BPI by changing numerical response options to word descriptors. In Phase I, this version was tested in RACFs to determine the feasibility of its use, its stability over time, and its internal consistency reliability. Minor modifications resulted. In Phase II, the refined version was abbreviated, and the internal consistency reliability of this Modified Residents' Verbal BPI was examined. SETTING: RACFs. PARTICIPANTS: Thirty-three residents of RACFs in Phase I, 149 in Phase II. INTERVENTION: The study revised and abbreviated the BPI to better fit it for use in RACFs, examining the reliability of the tool. MEASUREMENTS: Mini-Mental State Examination, Global Deterioration Scale, modified BPI. RESULTS: The abbreviated tool comprises three items assessing pain intensity and three assessing pain interference. It also includes an item to specify pain location and a movement protocol. Cronbach alpha coefficient for six intensity and interference items was 0.72 (N=106). CONCLUSION: This abbreviated tool requires further testing but has demonstrated adequate internal consistency reliability and is a brief, multidimensional tool that appears feasible for assessing pain in RACFs, including use with residents who have some cognitive impairment. It shows promise as a screening tool and may be useful to assess the effectiveness of pain relief interventions and to measure pain prevalence. [ABSTRACT FROM AUTHOR]

The impact of poorly managed chronic pain on the quality of life of elderly patients and the problems related to its management are widely acknowledged. Underutilisation of opioids is a major component of poor pain management in this group of patients, despite good evidence for the effectiveness of opioids and published guidelines directing their usage. Reasons for this underutilisation are, among others, poor assessment of pain in this age group; fear of polypharmacy and opiophobia; and avoidance of opioids because of concerns about tolerance, physical dependence, addiction and adverse effects. This review suggests approaches to overcome these barriers to opioid usage, such as regular pain assessments, education to overcome opiophobia, rational prescribing, utilisation of less conventional opioids and non-oral routes of administration, avoidance of inappropriate opioids, opioid rotation, and education about managing or preventing adverse effects, the reasons why opioid therapy may be unsuccessful, and the effects of psychological factors on the pain experience. This more rational and knowledge-based approach to the use of opioids in the management of chronic pain in the elderly population should correct the current problems with underprescribing in this age group. [ABSTRACT FROM AUTHOR]

Sore mouth is a common symptom in cancer patients which impacts negatively on their quality of life. This audit was performed on consecutive admissions to an in-patient palliative care unit in Perth, Western Australia to assess the incidence of mouth soreness and the associated microbiological culture and polymerase chain reaction (PCR) results. Of patients, 24% (20/83) recorded a sore mouth. The most common organism isolated was Candida spp. (n = 8), followed by herpes simplex virus type I (HSV; n = 5), Staphylococcus aureus (n = 2) and Klebsiella pneumoniae (n = 1). Only one of the five patients with HSV had the classic 'cold sore' lesion with crusting and ulceration on the lip. The others had non-specific findings such as erythema (n = 3), coated tongue (n = 2) or dry mouth (n = 3). The results highlight a greater incidence of HSV than previously reported and suggest further work to be performed on the aetiology and treatment of sore mouth in hospice patients. [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]

Objective: Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision‐making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life‐sustaining treatments and care utilisation to inform their broader use in ACP studies. Methods: Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. Results: Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's =.31–.37, p <.001), and ACP engagement (r's = −.41 to −.37, p <.001) indicated convergent validity. Conclusion: A substantial proportion of older adults reported clinically significant levels of decisional conflict when responding to a range of hypothetical scenarios about care or treatment. Two scenarios showed acceptable comprehensibility and response characteristics. A third scenario may be suitable following further refinement. Patient or Public Contribution: The scenarios tested here were designed in collaboration with a community representative and were further piloted with two groups of community members with relevant lived experiences; four people with life‐limiting conditions and five current or former care partners. [ABSTRACT FROM AUTHOR]

Background: Palliative care improves the quality of lives of patients and families affected by advanced illnesses through the prevention and relief of suffering. While palliative care is well established in developed countries, it is inadequate or non-existent in most developing countries. Palliative care is an emerging concept in Bhutan, a tiny Himalayan Kingdom. A small community palliative care service is available in the national referral hospital with three dedicated inpatient palliative care beds. This study explored the needs for palliative care among patients diagnosed with advanced illnesses and is a component of a larger project aimed to inform a suitable palliative care model for the country. Methods: This is a cross-sectional descriptive study. A survey, using a structured questionnaire including the EORTC QLQ-C30, was carried out among patients with advanced illness in hospitals, primary care units and communities across the country. Purposeful and snowball sampling strategies were used to recruit study participants. Results: Seventy (76%), out of 93 eligible patients, agreed to participate in the survey. Participants reported low to moderate scores on physical, role, emotional, cognitive and social functioning, a moderate score for the global health/ quality of life scale and moderately high (worse) scores in symptoms including fatigue, pain, insomnia, loss of appetite and the financial impact from the disease. Conclusions: The symptom burden experienced by patients affected by advanced illnesses demonstrates the need for palliative care in Bhutan. These findings will help inform the development of a public health-focused palliative care model, modified to the Bhutanese context, as recommended by the World Health Organization. [ABSTRACT FROM AUTHOR]

The use of multi-sensory rooms as a form of engagement with art in Palliative Care is largely unexplored. This practice-based report discusses a qualitative study exploring the experiences of hospice-based inpatients receiving end-of-life care and their carers who immersed themselves into a multi-sensory room. Findings demonstrate that the room provided a safe space for reflection and reconnection that counteracted challenging times during their end of life. It fostered healing and wellbeing by alleviated suffering through respite and sharing of treasured memories with loved ones. Key considerations for future iterations are also discussed. [ABSTRACT FROM AUTHOR]

Aim: To evaluate the effectiveness of the Learn Now; Live Well (LNLW) educational programme on enhancing the knowledge and support of caregivers living with a life-threatening illness. Design: A combined summative and formative evaluation design was used. Both quantitative and qualitative data were collected using a questionnaire with a five-point response scale of strongly agree to strongly disagree and semi-structured interviews. Sample: Two hundred and five participants attended the LNLW programme, interviews were held with a selection of carers and key informants from organizations and the inpatient setting. Results: At completion of the programme, a substantial reduction in care isolation, and increase in care confidence and knowledge was evident. The findings from the interviews indicated strong support, reassurance and having a skilled facilitator as the fundamental components for the success of the programme. Conclusion: The LNLW programme successfully improved carers' access to support across a range of sectors, increasing confidence through education and support. [ABSTRACT FROM AUTHOR]

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants' experiences with decision-making: "the person in relationship over time" and "maintaining involvement." Participant views on the practical issues associated with supported decision-making are addressed under the themes of "facilitating decision-making," "supported decision-making arrangements," "constraints on decision-making," and "safeguarding decision-making." While participants endorsed the principles of supported decision-making as part of their overarching strategy of "maintaining involvement" in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual "constraints on decision-making" also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a "spectrum approach" to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) has been shown to improve end-of-life care, yet uptake remains limited. Interventions aimed at increasing ACP uptake have often used a 'specialist ACP facilitator' model. The present qualitative study appraised the components of an ACP facilitator intervention comprising nurse-led patient screening and ACP discussions, as well as factors associated with the successful implementation of this model in primary care and acute hospital settings across rural and metropolitan Western Australia. Semistructured interviews were undertaken with 17 health professionals who were directly or indirectly involved in the facilitator ACP intervention among patients with severe respiratory disease. Additional process data (nurse facilitator role description, agreements with participating sites) were used to describe the nurse facilitator role. The interview data identified factors associated with successful implementation, including patient factors, health professional factors, ACP facilitator characteristics and the optimal settings for the intervention. The primary care setting was seen as most appropriate, and time limitations were a key consideration. Factors associated with successful implementation included trusting relationships between the nurse facilitator and referring doctor, as well as opportunities for meaningful encounters with patients. This study suggests a model of ACP nurse facilitation based in primary care may be an acceptable and effective method of increasing ACP uptake. [ABSTRACT FROM AUTHOR]

Purpose: Adolescents and young adults (AYA) with cancer are a cohort requiring specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions likely warrant age-appropriate adaptation, yet, there is little Australian research data available to inform best practice for this group. The goal of this work is to inform future models of ACP discussions for AYA. Methods: Retrospective medical record audit of AYA patients and an adult comparison group, diagnosed with a malignancy and referred to a community hospice service, in Western Australia, in the period between January 1, 2012 and December 1, 2015. Information was collected regarding end-of-life care discussions, documentation of agreed plan of care, and care received. Results: Twenty-seven AYA and 37 adult medical records were reviewed. Eighteen (66.7%) AYA patients died at home, compared with 19 (51.4%) adults ( p = 0.028). Desire to pursue all available oncological therapies, including clinical trials, was documented for 14 (51.9%) AYA patients compared with 9 (24.3%) of the adult group ( p = 0.02). Eleven AYA patients (40.7%) received chemotherapy during the last month of life compared with two (5.4%) adults ( p = 0.001). Conclusions: The results indicate that end-of-life care preferences for this unique cohort may differ from those of the adult population and need to be captured and understood. An ACP document incorporating a discussion regarding goals of care, preferred location of care, preference for place of death, and consent to future intervention, including cardiopulmonary resuscitation and prompts for review, could assist in pursuing this objective. [ABSTRACT FROM AUTHOR]

Background: Rural Australians have poorer survival for most common cancers, due partially to later diagnosis. Internationally, several initiatives to improve cancer outcomes have focused on earlier presentation to healthcare and timely diagnosis. We aimed to measure the effect of community-based symptom awareness and general practice-based educational interventions on the time to diagnosis in rural patients presenting with breast, prostate, colorectal or lung cancer in Western Australia.Methods: 2 × 2 factorial cluster randomised controlled trial. Community Intervention: cancer symptom awareness campaign tailored for rural Australians. GP intervention: resource card with symptom risk assessment charts and local cancer referral pathways implemented through multiple academic detailing visits. Trial Area A received the community symptom awareness and Trial Area B acted as the community campaign control region. Within both Trial Areas general practices were randomised to the GP intervention or control.Primary Outcome: total diagnostic interval (TDI).Results: 1358 people with incident breast, prostate, colorectal or lung cancer were recruited. There were no significant differences in the median or ln mean TDI at either intervention level (community intervention vs control: median TDI 107.5 vs 92 days; ln mean difference 0.08 95% CI -0.06-0.23 P=0.27; GP intervention vs control: median TDI 97 vs 96.5 days; ln mean difference 0.004 95% CI -0.18-0.19 P=0.99). There were no significant differences in the TDI when analysed by factorial design, tumour group or sub-intervals of the TDI.Conclusions: This is the largest trial to test the effect of community campaign or GP interventions on timeliness of cancer diagnosis. We found no effect of either intervention. This may reflect limited dose of the interventions, or the limited duration of follow-up. Alternatively, these interventions do not have a measurable effect on time to cancer diagnosis. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) is described as an ongoing discussion between a patient, their family and healthcare professionals (HCPs) to understand a patient's wishes for future health care. Legislation supporting ACP in Western Australia is relatively new and HCPs are still learning about the process and implementation. This study aimed to provide a rich description of rural health professionals' perceptions and experiences with ACP within the context of their professional role and to identify systemic issues and training needs. Ten focus groups were conducted throughout 2014 with a total of 55 rural participants including general practitioners (n = 15), general practice registrars (n = 6), practice nurses (n = 18), community nurses (n = 4) and hospital nurses (n = 12) in the south-western regions of Western Australia. Thematic analysis has identified the following themes regarding ACP: benefits to patients and families; professional roles in ACP; barriers and enablers; and systems for communicating ACP. HCPs have self-determined their roles in the ACP process, which currently leaves some components of the process unaccounted for, suggesting that collaboration between HCPs working together in a rural health setting and a standardised system for distributing these documents may assist with the implementation of ACP. [ABSTRACT FROM AUTHOR]

Students in the Rural Clinical School of Western Australia (RCSWA) spend one year of clinical study learning in small groups while embedded in rural or remote communities. This aims to increase the locally trained rural medical workforce. Their learning environment, the clinical context of their learning, and their rural doctor-teachers all contrast with the more traditional learning setting in city hospitals. The RCSWA has succeeded in its outcomes for students and in rural medical workforce impact; it has grown from 4 pilot sites to 14 in 12 years. This reflective piece assimilates observations of the formation of the RCSWA pedagogy and of the strategic alignment of education technologies with learning environment and pedagogy over a seven-year period. Internal and external influences, driving change in the RCSWA, were considered from three observer perspectives in a naturalistic setting. Flexibility in both education technologies and organizational governance enabled education management to actively follow pedagogy. Peter Senge's learning organization (LO) theory was overlaid on the strategies for change response in the RCSWA; these aligned with those of known LOs as well with LO disciplines and the archetypal systems thinking. We contend that the successful RCSWA paradigm is that of an LO. [ABSTRACT FROM AUTHOR]

Objective To explore perceptions of Noongar community members towards advance care planning (ACP), while developing culturally appropriate information resources for use in community and hospital settings. Design Qualitative research methods, combining active health promotion with interviews and group discussions for participant feedback. Setting Six rural communities across the Great Southern region of Western Australia. Participants Eighteen Noongar community members consented to participate in interviews or group discussions. Interventions Community members received information about ACP at community events or home visits, from an Aboriginal health worker and palliative care researcher. Main outcome measures Semi-structured interviews and group discussions were thematically analysed using a descriptive, exploratory approach. Research team reflections on community events also constituted data. Results Key themes impacting on perceptions of ACP included cultural approaches to dying, importance of family and kin, and appropriate communication. Participants were satisfied with the information resource and method of community engagement. Conclusions Culturally appropriate methods of engaging Aboriginal people in ACP discussions should include Aboriginal health workers and take a whole of community approach to awareness raising. [ABSTRACT FROM AUTHOR]

Abstract: Western cultural practices and values have largely shaped advance care planning (ACP) policies across the world. Low uptake of ACP among ethnic minority groups in Western countries has been interpreted with reference to cultural differences. This paper adopts a life-history approach to explore attitudes towards ACP among older, first-generation Dutch-Australian and Italian-Australian migrants. Thirty people participated in extended ethnographic interviews (N = 17) and group discussions (N = 13) during 2012. Transcripts were thematically analyzed and interpreted using a Foucauldian perspective on knowledge and power. Migration experiences, ongoing contact with the native country and participation in migrant community support networks influenced attitudes towards ACP. Dutch participants framed ACP discussions with reference to euthanasia, and adopted a more individualist approach to medical decision-making. Italian participants often spoke of familial roles and emphasized a family-based decision making style. The importance of migrant identity has been neglected in previous discussions of cultural factors influencing ACP uptake among ethnic minority groups. The unique migration experience should be considered alongside culturally appropriate approaches to decision-making, in order to ensure equitable access to ACP among migrant groups. [Copyright &y& Elsevier]

Background. Previous studies have focused on the treatment received by rural cancer patients and have not examined their diagnostic pathways as reasons for poorer outcomes in rural Australia. Objectives. To compare and explore diagnostic pathways and diagnostic intervals in patients with breast, lung, prostate or colorectal cancer from rural Western Australia (WA) to inform future interventions aimed at reducing time to cancer diagnosis. Methods. Mixed methods study of people recently diagnosed with breast, lung, prostate or colorectal cancer from the Goldfields and Great Southern Regions of WA. Qualitative interviews explored participants’ diagnostic pathways and factors underlying differences observed between individuals and cancers. Data were extracted from general practice and hospital records to calculate intervals from first presentation in general practice to final diagnosis. Results. Sixty-six participants were recruited (43 Goldfields and 23 Great Southern region; 24 breast, 20 colorectal, 14 prostate and 8 lung cancers). There were significant overall differences between cancers in time from presentation in general practice to referral (P = 0.045), from referral to seeing a specialist (P = 0.010) and from specialist appointment to cancer diagnosis (P ≤ 0.001). These differences were due to the nature of presenting symptoms, access to diagnostic tests and multiple visits to specialists. Breast cancer was diagnosed more quickly because its symptoms are more specific and due to better access to diagnostic tests and specialist one-stop clinics. Conclusions. Interventions to improve cancer diagnosis in rural Australia should focus on better case selection in general practice and better access to diagnostic tests, especially for prostate and colorectal cancers. [ABSTRACT FROM AUTHOR]

Background. Previous studies have focused on the treatment received by rural cancer patients and have not examined their diagnostic pathways as reasons for poorer outcomes in rural Australia. Objectives. To compare and explore symptom appraisal and help-seeking behaviour in patients with breast, lung, prostate or colorectal cancer from rural Western Australia (WA). Methods. A mixed-methods study of people recently diagnosed with breast, lung, prostate or colorectal cancer from rural WA. The time from first symptom to diagnosis (i.e. total diagnostic interval, TDI) was calculated from interviews and medical records. Results. Sixty-six participants were recruited (24 breast, 20 colorectal, 14 prostate and 8 lung cancer patients). There was a highly significant difference in time from symptom onset to seeking help between cancers (P = 0.006). Geometric mean symptom appraisal for colorectal cancer was significantly longer than that for breast and lung cancers [geometric mean differences: 2.58 (95% confidence interval, CI: 0.64–4.53), P = 0.01; 3.97 (1.63–6.30), P = 0.001, respectively]. There was a significant overall difference in arithmetic mean TDI (P = 0.046); breast cancer TDI was significantly shorter than colorectal or prostate cancer TDI [mean difference : 266.3 days (95% CI: 45.9–486.8), P = 0.019; 277.0 days, (32.1–521.9), P = 0.027, respectively]. These differences were explained by the nature and personal interpretation of symptoms, perceived as well as real problems of access to health care, optimism, stoicism, machismo, fear, embarrassment and competing demands. Conclusions. Longer symptom appraisal was observed for colorectal cancer. Participants defined core characteristics of rural Australians as optimism, stoicism and machismo. These features, as well as access to health care, contribute to later presentation of cancer. [ABSTRACT FROM AUTHOR]

This corrects the article DOI: 10.1038/bjc.2017.310. [ABSTRACT FROM AUTHOR]

Context: Primary care physicians are well placed to identify patients in need of advance care planning (ACP) and initiate ACP in advance of an acute situation.Objectives: This study aimed to understand Australian general practitioner (GP) clinical decision making relating to a patient's "need for ACP" and the likelihood of initiating ACP.Methods: An experimental vignette study pseudorandomly manipulated factors thought to influence decision making regarding ACP. Patient-level factors included gender, age, type of disease, medical severity, openness to ACP, doctor-patient relationship, and family support. An accompanying demographic survey assessed health professional-level factors, including gender, years of experience, place of training, place of practice, caseload of patients with ACP, direct personal experience in ACP, and self-reported attitudes toward ACP. Seventy GPs were recruited, and each completed six unique vignettes, providing ratings of patient need for ACP, importance of initiating ACP in the coming months, and likelihood of initiating ACP at the next consultation.Results: Older patients, with malignant or cardiovascular disease, severe clinical presentations, good doctor-patient relationship, female gender, and poor family support were more likely to receive prompt ACP. Positive GP attitudes toward ACP were associated with greater likelihood of initiating ACP promptly.Conclusion: Patients with presentations suggesting higher mortality risk were identified as being in need of ACP; however, the likelihood of initiating ACP was sensitive to GP attitudes and psychosocial aspects of the doctor-patient interaction. Training materials aimed at encouraging GP involvement in ACP should target attitudes toward ACP and communication skills, rather than focusing solely on prognostic risk. [ABSTRACT FROM AUTHOR]