Interventions to promote readiness for advance care planning: A systematic review and meta-analysis.

BACKGROUND: Advance care planning is recommended as part of standard medical services. Readiness, denoting stages of behavior change, exerts a substantial influence on its uptake. However, the characteristics and impacts of advance care planning interventions on readiness are not well-established. METHOD: We systematically reviewed and conducted a meta-analysis of randomized controlled trials assessing the effects of advance care planning interventions on readiness. Studies were appraised using Joanna Briggs Institute Critical Appraisal tools. Meta-analyses were performed using mean difference of continuous variables or risk ratios of binary variables and their 95 % confidence interval as the pooled effect sizes. RESULTS: Eight studies were included in this review and were all rated low quality. Meta-analysis showed that interventions resulted in slight improvement in overall readiness (mean difference = 0.19, 95 % confidence interval: 0.02-0.36) for advance care planning. However, statistically significant effects of interventions were not identified for readiness in relation to specific behaviors (appointment of a healthcare proxy, talking to a healthcare proxy, talking to a medical practitioner about living wills, and signing a living will). CONCLUSION: Our meta-analyses demonstrated that interventions can improve the overall readiness for advance care planning, suggesting the necessity to integrate readiness into future health policies and clinical practices. Nevertheless, the absence of significant effects on specific behavioral readiness underscores the requirement for additional refinement in intervention design, advanced technologies, and theoretical foundations. REGISTRATION: Not registered.

Cross-cultural adaptation and psychometric validation of point-of-care outcome assessment tools in Chinese palliative care clinical practice.

BACKGROUND: A standardized national approach to routinely assessing palliative care patients helps improve patient outcomes. However, a quality improvement program-based on person centered outcomes within palliative care is lacking in Mainland China. The well-established Australian Palliative Care Outcome Collaboration (PCOC) national model improves palliative care quality. This study aimed to culturally adapt and validate three measures that form part of the PCOC program for palliative care clinical practice in China: The PCOC Symptom Assessment Scale (PCOC SAS), Palliative Care Problem Severity Scale (PCPSS), Palliative Care Phase. METHODS: A study was conducted on cross-cultural adaptation and validation of PCOC SAS, PCPSS and Palliative Care Phase, involving translation methods, cognitive interviewing, and psychometric testing through paired assessments. RESULTS: Cross-cultural adaptation highlighted the need to strengthen the link between the patient's care plan and the outcome measures to improve outcomes, and the concept of distress in PCOC SAS. Analysis of 368 paired assessments (n = 135 inpatients, 22 clinicians) demonstrated that the PCOC SAS and PCPSS had good and acceptable coherence (Cronbach's a = 0.85, 0.75 respectively). Palliative Care Phase detected patients' urgent needs. PCOC SAS and PCPSS showed fair discriminant and concurrent validity. Inter-rater reliability was fair for Palliative Care Phase (k = 0.31) and PCPSS (k = 0.23-0.30), except for PCPSS-pain, which was moderate (k = 0.53). CONCLUSIONS: The Chinese version of PCOC SAS, PCPSS, and Palliative Care Phase can be used to assess outcomes as part of routine clinical practice in Mainland China. Comprehensive clinical education regarding the assessment tools is necessary to help improve the inter-rater reliability.

Educational content and strategies to support nurses from culturally and linguistically diverse backgrounds caring for patients considering voluntary assisted dying: The Australian experience.

OBJECTIVES: Drawing on findings from a qualitative study that aimed to explore the knowledge and attitudes of nurses from culturally and linguistically diverse (CALD) backgrounds about voluntary assisted dying (VAD). The study also aimed to identify the strategies that assist nurses in their readiness and preparation for exposure to VAD. This paper reports on the educational content and strategies that could assist nurses from CALD backgrounds to be better prepared when they encounter VAD requests. BACKGROUND: Around the world, healthcare professionals have roles to play in caring for patients requesting voluntary assisted dying. Nurses, particularly those from diverse geographic and clinical settings, have voiced inadequate knowledge and understanding about voluntary assisted dying. DESIGN: A qualitative descriptive approach was undertaken. METHODS: Data collection involved one focus group and 16 in-depth interviews. A total of 21 nurses from CALD backgrounds were recruited from one Australian state. Thematic analysis was conducted to interpret the data. FINDINGS: Nurses identified their knowledge gaps and specified the need for education and workplace training on VAD, its legal and ethical aspects, clarity on their role, communication techniques and how VAD intersects with their practice. They suggested various teaching strategies that could prepare nurses to work safely and confidently in a clinical environment where voluntary assisted dying is an option for patients. CONCLUSION: Given the high number of nurses from diverse backgrounds working in the Australian health sector, these nurses need to be fully prepared to care for patients requesting VAD.

Stages of readiness for advance care planning: Systematic review and meta-analysis of prevalence rates and associated factors.

BACKGROUND: Advance care planning has been widely recommended to respect the medical care preferences of patients in the final stages of life. However, uptake of advance care planning in healthcare settings remains suboptimal. It may be beneficial to take into account individuals' readiness for advance care planning based on the stages to change identified in the Transtheoretical Model. OBJECTIVE: To identify the measurements used to assess readiness of advance care planning based on the Transtheoretical Model, to pool the prevalence of readiness stages, and to summarize the factors affecting people's readiness for advance care planning. DESIGN: Systematic review and meta-analysis. METHODS: We systematically searched the databases of PubMed, EMBASE, The Cochrane Library, CINAHL, and Web of Science for relevant studies from inception to February 2023. A random effects model was used to estimate the pooled prevalence. And a narrative review on the factors associated with stages of readiness was conducted. RESULTS: This meta-analysis included 25 studies involving a total of 4237 individuals. The precontemplation stage was the most commonly identified stage of readiness among advance care planning behaviors (26-72 %). The prevalence of readiness stages for advance care planning varied among different types of behavior. The behavior of "talking to health care proxy/family/loved ones about thoughts on quality versus quantity of life" had the highest level of readiness among all listed behaviors, followed by "talking to health care proxy/family/loved ones about living will", "signing a health care proxy form" and "signing a living will", "signing an advance directive", as well as "talking to doctors about living will". Regarding to influencing factors, a majority of sociodemographic and clinical factors did not show consistent associations with readiness, but some studies did suggest potential links with age, health status, countries, type of assessment, core structures of the Transtheoretical Model, and intervention modalities. CONCLUSIONS: A majority of individuals were unaware of advance care planning. There is an urgent need to promote readiness for such planning. Starting with preliminary activities such as "talking to health care proxy/family/loved ones about thoughts on quality versus quantity of life" can help initiate advance care planning. Better integration of the Transtheoretical Model and interventions into the research of advance care planning readiness are needed. REGISTRATION: Not registered.

The experience of Australian aged care workers during a trial implementation of a palliative care outcomes programme.

End of life care is an essential part of the role of Australian aged care homes (ACHs). However, there is no national framework to support aged care staff in systematically identifying residents with palliative care needs or to routinely assess, respond to, and measure end of life needs. The Palliative Care Outcomes Collaboration (PCOC) is a national outcomes and benchmarking programme which aims to systematically improve palliative care for people who are approaching the end of life, and for their families and carers. The PCOC Wicking Model for Residential Aged Care was developed and piloted in four Australian ACHs. This paper reports on the qualitative findings from semi-structured interviews and focus groups conducted with ACH staff (N = 37) to examine feasibility. Thematic analysis identified three overarching themes about the pilot: (i) processes to successfully prepare and support ACHs; (ii) appropriateness of PCOC tools for the ACH setting; and (iii) realised and potential benefits of the model for ACHs. The lessons presented valuable insights to refine the PCOC Wicking Model and enrich understanding of the potential challenges and solutions for implementing similar programs within ACHs in future. The results suggest that key to successfully preparing ACHs for implementation of the PCOC Wicking Model is an authentic and well-paced collaborative approach with ACHs to ensure the resources, structures and systems are in place and appropriate for the setting. The PCOC Wicking Model for Residential Aged Care is a promising prototype to support ACHs in improving palliative and end of life care outcomes for residents and their carers.

Antidepressant use and hyperactive delirium at the end of life: retrospective study.

OBJECTIVES: Little is known about the adverse effects associated with antidepressant use in palliative care inpatients imminently approaching death. This study investigates the relationship between antidepressant use and hyperactive delirium in this population. METHODS: This is a retrospective medical record review of patients who died in a metropolitan palliative care unit in Victoria, Australia, during 2019. Generalised estimating equations were used to estimate the association between antidepressant use and presence of hyperactive delirium in the final 2 weeks of life. RESULTS: Of the 501 adult patients who died in the 12-month period, 113 (22.55%) were on at least one antidepressant at the time of admission. Any antidepressant use in the last 14 days of life was significantly associated with the diagnosis of hyperactive delirium (OR 1.48; 95% CI 1.30, 1.68). Patients prescribed antidepressants also experienced longer durations of delirium (3.89 days; SD 4.23) compared with those not taking any antidepressant (2.99 days; SD 3.70) in the final 2 weeks of life. CONCLUSION: Antidepressant use or discontinuation is significantly associated with hyperactive delirium within 14 days of death. Although the causes of delirium are multifactorial and complex, antidepressant use is a potentially modifiable risk factor.

Family Carers' Experiences of Goals of Care Conversations in Acute Hospital Settings.

End-of-life Goals of Care (GoC) discussions aim to support care that is consistent with patients' preferences and values. This study uses an exploratory qualitative design drawing upon a social constructivist epistemology to examine family carers' perspectives on GoC within acute Australian hospital settings. Twenty-five family carers of aging inpatients were recruited from six Australian hospitals to participate in recorded, semi-structured interviews. Data were transcribed and analyzed using reflexive thematic analysis. Three main themes were developed. Theme 1 explored carers' experiences of GoC discussions-identifying varying levels of preparedness and carers' hopes for open, two-way discussions initiated by empathic Health Care Professionals (HCPs). Theme 2 examined carers' unmet needs for time, space, consistency, and support to make careful decisions. Theme 3 identified carers advocating for patients' needs when they could not do it themselves. Preparing carers and normalizing GoC discussions relating to end-of-life care maximizes benefits for patients, carers, and HCPs involved.

Palliative care needs and specialist services post stroke: national population-based study.

OBJECTIVES: (1) To compare palliative care needs of patients admitted primarily with stroke and (2) to determine how the care needs of these patients affect their use of different types of specialist palliative care services. METHODS: Observational study based on point-of-care data from the Australian Palliative Care Outcomes Collaboration. Multivariate logistic regression models were used to explore the association between patients' palliative care needs and use of community versus inpatient specialist palliative care services. RESULTS: The majority of patients who had a stroke in this study population had mild or no symptom distress, but experienced a high degree of functional impairment and needed substantial help with basic tasks of daily living. A lower Australia-modified Karnofsky Performance Status score (OR=1.82, 95% CI 1.06 to 3.13) and occurrence of an 'unstable' palliative care phase (OR=28.34, 95% CI 9.03 to 88.94) were associated with use of inpatient versus community palliative care, but otherwise, no clear association was observed between the majority of symptoms and use of different care services. CONCLUSIONS: Many people with stroke could potentially have been cared for and could have experienced the terminal phases of their condition in a community setting if more community support services were available for their families.

EFdA efficiently suppresses HIV replication in the male genital tract and prevents penile HIV acquisition.

Sexually transmitted HIV infections in heterosexual men are acquired through the penis. Low adherence to condom usage and the fact that 40% of circumcised men are not protected indicate the need for additional prevention strategies. Here, we describe a new approach to evaluate the prevention of penile HIV transmission. We demonstrated that the entire male genital tract (MGT) of bone marrow/liver/thymus (BLT) humanized mice is repopulated with human T and myeloid cells. The majority of the human T cells in the MGT express CD4 and CCR5. Direct penile exposure to HIV leads to systemic infection including all tissues of the MGT. HIV replication throughout the MGT was reduced 100-1,000-fold by treatment with 4'-ethynyl-2-fluoro-2'-deoxyadenosine (EFdA), resulting in the restoration of CD4+ T cell levels. Importantly, systemic preexposure prophylaxis with EFdA effectively protects from penile HIV acquisition. IMPORTANCE Over 84.2 million people have been infected by the human immunodeficiency virus type 1 (HIV-1) during the past 40 years, most through sexual transmission. Men comprise approximately half of the HIV-infected population worldwide. Sexually transmitted HIV infections in exclusively heterosexual men are acquired through the penis. However, direct evaluation of HIV infection throughout the human male genital tract (MGT) is not possible. Here, we developed a new in vivo model that permits, for the first time, the detail analysis of HIV infection. Using BLT humanized mice, we showed that productive HIV infection occurs throughout the entire MGT and induces a dramatic reduction in human CD4 T cells compromising immune responses in this organ. Antiretroviral treatment with novel drug EFdA suppresses HIV replication in all tissues of the MGT, restores normal levels of CD4 T cells and is highly efficient at preventing penile transmission.

Socially, Culturally and Spiritually Sensitive Public Health Palliative Care Models in the Lower-income Countries: An Integrative Literature Review.

The demand for palliative care (PC) is ever-increasing globally. The emergence of COVID-19 pandemic has further accelerated the need for PC. In the lower-income countries (LICs), where PC need is highest, PC, the most humane, appropriate and realistic approach to care for patients and families affected by life-limiting illness, is minimal or non-existent. Recognising the disparity between high, middle and LICs, the World Health Organization (WHO) has recommended public health strategies for PC within the socioeconomic, cultural and spiritual contexts of individual countries. This review aimed to: (i) identify PC models in the LICs utilising public health strategies and (ii) characterise how social, cultural and spiritual components were integrated into these models. This is an integrative literature review. Thirty-seven articles were included from a search of four electronic databases - Medline, Embase, Global Health and CINAHL. Literature, both empirical and theoretical literature, published in English from January 2000 to May 2021 that mentioned PC models/services/programmes integrating public health strategies in the LICs were included in the study. A number of LICs utilised public health strategies to deliver PC. One-third of the selected articles highlighted the importance of integrating sociocultural and spiritual components into PC. Two main themes - WHO-recommended public health framework and sociocultural and spiritual support in PC and five subthemes - (i) suitable policies; (ii) availability and accessibility of essential drugs; (iii) PC education for health professionals, policymakers and the public; (iv) implementation of PC at all levels of healthcare and (v) sociocultural and spiritual components, were derived. Despite embracing the public health approach, many LICs encountered several challenges in integrating all four strategies successfully.

A long-acting formulation of rifabutin is effective for prevention and treatment of Mycobacterium tuberculosis.

Tuberculosis (TB) is a communicable disease caused by Mycobacterium tuberculosis (Mtb) and is a major cause of morbidity and mortality. Successful treatment requires strict adherence to drug regimens for prolonged periods of time. Long-acting (LA) delivery systems have the potential to improve adherence. Here, we show the development of LA injectable drug formulations of the anti-TB drug rifabutin made of biodegradable polymers and biocompatible solvents that solidifies after subcutaneous injection. Addition of amphiphilic compounds increases drug solubility, allowing to significantly increase formulation drug load. Solidified implants have organized microstructures that change with formulation composition. Higher drug load results in smaller pore size that alters implant erosion and allows sustained drug release. The translational relevance of these observations in BALB/c mice is demonstrated by (1) delivering high plasma drug concentrations for 16 weeks, (2) preventing acquisition of Mtb infection, and (3) clearing acute Mtb infection from the lung and other tissues.

Delivery and outcomes of end-of-life care in the Australian context: Experiences and reflections of general practitioners.

Previous research on general practitioners' (GPs') involvement in end-of-life care has largely focused on a specific aspect of care or has provided broad overviews that failed to capture individual variations in patient management. This qualitative study aimed to explore Australian GPs' feedback and reflections on the individual-level care provided for patients in their last year of life. The findings of the study were drawn from a nation-wide survey of GPs' experiences in end-of-life care. We analysed responses from 63 GPs for 267 of the 272 reported deaths. Factors influencing delivery of optimal end-of-life care reported by GPs were categorised into four groups: patient-related factors, carer-related factors, interactions between GPs and patients/carer-related factors and broader health system issues. Each group included both barriers and facilitators. Our study highlighted importance of the emotional dimensions of therapeutic relationships with patients and their family, availability and capacity of family support and smooth communication and continuity of care between GPs and hospitals in delivery of optimal end-of-life care. Lack of these facilitators, misconceptions of palliative care and conflicts on implementing care plans among patients and their family tended to impede delivery of such care. On the basis of our findings in the present study and previous literature, we conclude that improved end-of-life care in general practice requires comprehensive approaches to supporting both the GP and family to provide care in patients' preferred place, such as enhanced palliative care training and improved availability of external support for GPs, higher levels of hospital-based services reaching into community settings and broader community-based resources for families beyond simply the healthcare system.

Provision of end-of-life care in primary care: a survey of issues and outcomes in the Australian context.

OBJECTIVES: To describe general practitioners' (GPs) involvement in end-of-life care, continuity and outcomes of care, and reported management challenges in the Australian context. METHODS: Sixty-three GPs across three Australian states participated in a follow-up survey to report on care provided for decedents in the last year life using a clinic-based data collection process. The study was conducted between September 2018 and August 2019. RESULTS: Approximately one-third of GPs had received formal palliative care training. Practitioners considered themselves as either the primary care coordinator (53.2% of reported patients) or part of the management team (40.4% of reported patients) in the final year of care. In the last week of life, patients frequently experienced reduced appetite (80.6%), fatigue (77.9%) and psychological problems (44.9%), with GPs reporting that the alleviation of these symptoms were less than optimal. Practitioners were highly involved in end-of-life care (eg, home visits, consultations via telephone and family meetings), and perceived higher levels of satisfaction with communication with palliative care services than other external services. For one-third of patients, GPs reported that the last year of care could potentially have been improved. CONCLUSION: There are continuing needs for integration of palliative care training into medical education and reforms of healthcare systems to further support GPs' involvement in end-of-life care. Further, more extensive collection of clinical data is needed to evaluate and support primary care management of end-of-life patients in general practice.

Uptake of advance care planning and its circumstances: An nationwide survey in Australian general practice.

There are potential benefits associated with advance care planning (ACP), and general practitioners (GPs) are well placed to coordinate ACP initiatives with their patients. Few studies have reported on the uptake of different forms of advance care plan conducted by GPs and how this affects patients' place of death. The primary aims of the study were to examine uptake of verbal (conversations regarding care preferences) and written (documented care preferences) advance care plans and their associated factors from the perspective of Australian GPs. The secondary aim was to determine the impact of different types of advance care plans on place of death. Sixty-one GPs from three Australian states used a validated clinic-based data collection process to report on care provided for decedents in the last year of life, including provision of services, place of death, and uptake of ACP. We found that 58 (27.9%), 91 (43.7%) and 59 (28.4%) reported decedents had no advance care plans, verbal plans or written plans, respectively. There were increased uptake of both verbal plans (relative risk ratio [RRR] = 13.10, 95% confidence interval [CI]: 2.18-77.34) and written plans (RRR = 10.61, 95% CI: 1.72-65.57) if GPs foresaw the death for >90 days versus <7 days. Palliative care training history for GPs predicted uptake of verbal plans (RRR = 5.83, 95% CI: 1.46-31.93). Patients with verbal plans versus no plans were more likely to die at a private residence (odds ratio = 4.97, 95% CI: 1.32-18.63). Our findings suggest that expectation of death for at least three months prior to the event (where clinically possible) and palliative care training for GPs improve the uptake of ACP in general practice. Larger pragmatic trials are required to determine the impact of ACP on patients' place of death.

Symptom trajectories for palliative care inpatients with and without hyperactive delirium in the last week of life.

AIMS: Hyperactive delirium (HD) is a common and distressing symptom among palliative care patients. This study aimed to describe the characteristics of HD and associated symptoms among palliative care inpatients and evaluate relationships between HD development and symptom trajectories in this population. DESIGN: A retrospective study was conducted. METHODS: A retrospective review of medical records was conducted for all patients who died in a large Australian specialist palliative care unit between 1 January and 31 December 2019. Patients were assessed daily using the Symptoms Assessment Scale (SAS) and Palliative Care Problem Severity Scale (PCPSS). Multilevel models were used to estimate the differences in symptoms trajectories in the last 7 days of life between the two groups. RESULTS: Of the 501 included patients, 64.5% (323) had an episode of HD. For 30% (95) of patients, HD occurred prior to admission. Compared with patients without HD, those with HD had significantly higher odds ratios (ORs) for four of the seven SAS symptoms (sleep problems, appetite, fatigue and pain; OR range: 1.94-4.48, p < .05), and all four PCPSS items (OR range: 2.00-3.00, p < .05) in the last week of life. CONCLUSIONS: Palliative care inpatients commonly experience HD in their last week of life. There are higher levels of symptom distress, complexity, psychological concerns and family/carer concerns among patients with HD compared with those without HD. IMPACT: The high prevalence of HD, and its association with higher levels of symptom distress, highlights the importance of routine screening and optimal management for HD among palliative care patients. Given the widely recognized challenges facing palliative care professionals in assessment and management of delirium, provision of relevant training among these professionals is recommended.

Comparison of end-of-life care for people living in home settings versus residential aged care facilities: A nationwide study among Australian general practitioners.

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.

Support Needs for Bhutanese Family Members Taking Care of Loved Ones Diagnosed with Advanced Illness.

Background: Palliative care aims to improve the quality of life of patients diagnosed with an advanced illness and their families. Family members, who often play a central role caring for their very ill loved ones, have significant support needs. In Bhutan, where palliative care is an emerging concept, the needs of family members have not been assessed thus far. Objective: This study explored the support needs of Bhutanese family members caring for their loved ones diagnosed with advanced illness. Methods: This is a cross-sectional descriptive study. Setting/Subjects: Study sites included the national referral hospital, the two regional referral hospitals, four district hospitals and Basic Health Units (Grade I and II), spread across Bhutan. Participants were recruited through purposeful and snowball sampling strategies. Data were collected from May to August 2019. The Carer Support Needs Assessment Tools (CSNAT) was used. Results: Despite unforeseen challenges, 46 family members out of 60 identified (77%) participated in the survey. Twenty-three (50%) cared for relatives with advanced cancer and the remainder for loved ones with non-malignant conditions. This study found high support needs among both groups. The priority needs included understanding their relative's illness, managing symptoms, providing personal care, financial aspects, dealing with their own feelings and emotions and knowing what to expect in the future. Conclusion: This study will help inform the World Health Organization recommended public health approach to palliative care modified to the Bhutanese context for enabling a cost-effective intervention to improve the quality of lives of patients and families.

End-of-life care in general practice: clinic-based data collection.

BACKGROUND: There are no processes that routinely assess end-of-life care in Australian general practice. This study aimed to develop a data collection process which could collect observational data on end-of-life care from Australian general practitioners (GPs) via a questionnaire and clinical data from general practice software. METHODS: The data collection process was developed based on a modified Delphi study, then pilot tested with GPs through online surveys across three Australian states and data extraction from general practice software, and finally evaluated through participant interviews. RESULTS: The developed data collection process consisted of three questionnaires: Basic Practice Descriptors (32 items), Clinical Data Query (32 items) and GP-completed Questionnaire (21 items). Data extraction from general practice software was performed for 97 decedents of 10 GPs and gathered data on prescriptions, investigations and referral patterns. Reports on care of 272 decedents were provided by 63 GPs. The GP-completed Questionnaire achieved a satisfactory level of validity and reliability. Our interviews with 23 participating GPs demonstrated the feasibility and acceptability of this data collection process in Australian general practice. CONCLUSIONS: The data collection process developed and tested in this study is feasible and acceptable for Australian GPs, and comprehensively covers the major components of end-of-life care. Future studies could develop an automated data extraction tool to reduce the time and recall burden for GPs. These findings will help build a nationwide integrated information network for primary end-of-life care in Australia.

Healthcare professionals' views on how palliative care should be delivered in Bhutan: A qualitative study.

Palliative care aims to relieve serious health-related suffering among patients and families affected by life-limiting illnesses. However, palliative care remains limited or non-existent in most low- and middle- income countries. Bhutan is a tiny kingdom in the Himalayas where palliative care is an emerging concept. This study aimed to explore the views of Bhutanese healthcare professionals on how palliative care should be delivered in Bhutan. It is a component of a bigger research program aimed at developing a contextual based palliative care model for Bhutan. This is a descriptive qualitative study. Eleven focus group discussions and two in-depth interviews were conducted among healthcare professionals, recruited through purposeful sampling, from community health centres, district hospitals, regional and national referral hospitals, and the traditional hospital in Bhutan. The participants in this study emphasized the need for suitable palliative care policies; education, training and awareness on palliative care; adequate access to essential palliative care medicines; adequate manpower and infrastructure; and a multi-disciplinary palliative care team. Participants confirmed a socially, culturally and spiritually appropriate approach is crucial for palliative care services in Bhutan. Despite palliative care being a young concept, the Bhutanese healthcare professionals have embraced its importance, emphasized its urgent need and highlighted their views on how it should be delivered in the country. This study will help inform the development of a public health-focused palliative care model, socially, culturally and spiritually applicable to the Bhutanese people, as recommended by the World Health Organization.

Patient-reported outcome measurement of symptom distress is feasible in most clinical scenarios in palliative care: an observational study involving routinely collected data.

BACKGROUND: Implementation of routinely collected patient-reported outcome measures (PROMs) ensures patients' priorities are at the forefront of care planning and helps to standardize approaches to quality improvement. In palliative care, barriers to PROMs are widely known but what are not understood are the clinical and care settings in which patients are more likely to report and when proxy reporting is needed. OBJECTIVE: To examine the incidence of patient-reported symptom distress compared to the incidence of proxy reporting in palliative care and influencing factors. METHODS: A national observational study using routinely collected PROMs data with influencing factors investigated by logistic regression modelling. Participants were patients with an advanced life-limiting illness receiving palliative care in an inpatient or a community healthcare setting in Australia. RESULTS: Sixteen thousand one hundred and fifty-eight reports of symptom distress were collected from 1117 patients seen by 21 palliative care services. The majority of respondents were diagnosed with cancer (76%), were older (≥65 years, 72%) and had nominated English as their first language (88%). The majority of symptom distress reports were completed by patients (61%). The odds of a patient providing a self-report where grater when they were receiving community versus inpatient palliative care (odds ratio (OR): 3.0; 95% confidence interval (CI): 2.25-4.01), for patients diagnosed with malignant versus non-malignant disease (OR 1.7; 95% CI: 1.26-2.31), and for those who required an urgent change in their care plan versus those whose symptoms and problems were adequately managed (OR: 1.38; 95% CI: 1.04-1.83). CONCLUSION: Three factors are associated with an increased likelihood of patient versus proxy reporting in palliative care: healthcare setting, diagnosis, and the acuity and urgency of the patient's clinical needs. PROMs are feasible in most clinical scenarios in palliative care, including when an urgent clinical response is required.