Online modules to improve health professionals' end-of-life law knowledge and confidence: a pre-post survey study.

BACKGROUND: Health professionals and medical students have knowledge gaps about the law that governs end-of-life decision-making. There is a lack of dedicated training on end-of-life law and corresponding research on the impact of this type of training. OBJECTIVE: To examine the impact of online training modules on key concepts of end-of-life law on Australian health professionals' legal knowledge and their self-reported confidence in applying the law in practice. METHODS: Online pre- and post-training surveys were completed by training participants. The optional surveys collected demographic data, directly assessed legal knowledge and measured self-reported confidence in applying the law in clinical practice, before and after training. RESULTS: Survey response rates were 66% (pre-training) and 12% (post-training). The final sample for analysis (n = 136 participants with matched pre- and post-training surveys), included nurses, doctors, allied health professionals, medical students and a small number of non-health professionals. Following completion of the online training modules, legal knowledge scores significantly increased overall and across each domain of end-of-life law. Participants were also more confident in applying the law in practice after training (median = 3.0, confident) than before training (median = 2.0, not confident). CONCLUSIONS: This study found that completion of online training modules on end-of-life law increased Australian health professionals' legal knowledge and self-reported confidence in applying the law in clinical practice. Participants demonstrated some remaining knowledge gaps after training, suggesting that the training, while effective, should be undertaken as part of ongoing education on end-of-life law. Future research should examine longer term outcomes and impacts of the training.

A cross-sectional study of the first two years of mandatory training for doctors participating in voluntary assisted dying.

OBJECTIVES: Voluntary assisted dying (VAD) was legalized in Victoria, Australia, in June 2019. Victoria was the first jurisdiction in the world to require doctors to undertake training before providing VAD. This study examines data from doctors who completed the mandatory training in the first 2 years of the VAD system's operation (up to 30 June 2021). It describes the doctors who are undertaking VAD training, their post-training attitudes toward VAD participation, and their experiences of the mandatory training. METHODS: Through the online training, doctors completed a short demographic survey and undertook formal assessment of knowledge (90% pass mark). They also were invited to complete an optional survey evaluating the training. RESULTS: In total, 289 doctors passed the training, most commonly males (56%) aged 36-65 years (82%) from an urban location (72%). Most were more than 10 years post fellowship (68%) and practising as general practitioners (51%) or medical oncologists (16%). The training most commonly took 6 h (range 2 h to over 9 h). Most doctors passed the assessment at the first (65%) or second (19%) attempt. Almost all participants (97%) found the training helpful or very helpful and most reported being confident or very confident in their knowledge (93%) and application (88%) of the VAD legislation. SIGNIFICANCE OF RESULTS: Doctors reported the training was helpful and improved their confidence in knowing the law and applying it in clinical practice. The profile of trained doctors (particularly their location and specialty) suggests continued growth of participating doctors is needed to facilitate patient access to VAD. It is important that this safeguard does not discourage doctors' participation.

Assisted Deaths Prior to the Voluntary Assisted Dying Act 2017 (Vic): Would Patients Have Met the Eligibility Criteria to Request Voluntary Assisted Dying?

Unlawful assisted dying practices have been reported in Australia for decades. Voluntary assisted dying (VAD) is now lawful in Victoria and Western Australia in limited circumstances and will soon be lawful in a further four Australian States. This article examines nine cases involving unlawful assisted dying practices in Victoria in the 12 months prior to the commencement of the Voluntary Assisted Dying Act 2017 (Vic) in 2019. It explores whether, if that Act had been in operation at the relevant time, these patients would have been eligible to request VAD, having regard to their decision-making capacity and their disease, illness or medical condition. Many of these patients would not have been eligible to request VAD had the legislation been operational, primarily because they lacked decision-making capacity. As VAD is lawful only in a narrow set of circumstances, unlawful assisted deaths may continue to occur in those States where voluntary assisted dying is legal.

Operationalizing legal rights in end-of- life decision-making: A qualitative study.

BACKGROUND: For a patient's legal right to make end-of-life treatment decisions to be respected, health care practitioners, patients and their substitute decision-makers must know what rights exist and how to assert them (or support others to assert them). Yet very little is known about what enhances or obstructs the operationalization of legal rights from the perspective of patients, family members and substitute decision-makers. AIM: To explore barriers and facilitators to the operationalization of rights in end-of-life decision-making from the perspectives of terminally-ill patients and family members and substitute decision-makers of terminally ill patients in Australia. DESIGN: Semi-structured interviews (face to face and telephone) with patients, family or substitute decision-makers experienced in end-of-life decision-making completed between November 2016 and October 2017. A thematic content analysis of interview transcripts. SETTING/PARTICIPANTS: Purposive sampling across three Australian states provided 16 terminally-ill patients and 33 family and/or substitute decision-makers. RESULTS: Barriers and facilitators emerged across three overlapping domains: systemic factors; individual factors, influenced by personal characteristics and decision-making approach; and communication and information. Health care practitioners play a key role in either supporting or excluding patients, family and substitute decision-makers in decision-making. CONCLUSION: In addition to enhancing legal literacy of community members and health practitioners about end-of-life decision-making, support such as open communication, advocacy and help with engaging with advanced care planning is needed to facilitate people operationalizing their legal rights, powers and duties. Palliative care and other support services should be more widely available to people both within and outside health systems.

Intentional hastening of death through medication: a case series analysis of Victorian deaths prior to the Voluntary Assisted Dying Act 2017.

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

Role of Law in End-of-Life Decision-Making: Perspectives of Patients, Substitute Decision-Makers and Families.

The law regulating medical end-of-life decisions aims to support patients to receive high-quality health care. It does so through ensuring treatment received reflects the person's wishes and values and protecting health professionals who provide adequate pain and symptom relief even if that treatment may coincidentally hasten death. However, good decision-making is predicated by those involved, including patients themselves and those supporting patients, being familiar with the law and the role it plays in the decision-making process. This article reports on a study exploring the role that law plays in end-of-life decision-making from the perspective of terminally-ill patients, their substitute decision-makers and family members. While participants' decision-making practices were often underpinned by a legal framework, the role of the law was largely invisible. Community education is needed for the public to know their legal rights and responsibilities, and to understand that the law plays a role in supporting end-of-life decision-making.

Prevalence of advance care directives in the community: a telephone survey of three Australian States.

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.

Community knowledge of law at the end of life: availability and accessibility of web-based resources.

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.

Mapping allied health evidence-based practice: providing a basis for organisational realignment.

OBJECTIVE: Ahead of the convergence of two major paediatric services, we examined evidence-based practice (EBP) self-efficacy, outcome expectance, knowledge and use among allied health (AH) staff in two major Queensland (Qld) paediatric services. This was to determine whether any differences existed based on organisational affiliation, profession and any previous training to inform a strategy to enhance AH EBP within the new organisational setting. METHODS: All AH staff from the two Brisbane (Qld) tertiary paedritic hospitals were invited to participate in the survey. Using a cross-sectional design EBP self-efficacy, outcome expectancy, knowledge and use, as well as previous EBP training, were assessed with an online survey. Background demographic information obtained included professional discipline and hospital. RESULTS: One hundreD and thirty-eight health practitioners completed the survey (37% respone rate). Most practioners had accessed EBP training. Mean scores for EBP attitudes (self-efficacy and outcome expectancy) and knowledge were higher than for EBP use scores. Greater variation was observed across professional disciplines than organisations. Training impacted positively on EBP measures but explained a small proportion of total variance in regression models. CONCLUSIONS: The results underscore the need to provide organisational supports to AH staff ro EBP implementation. Strategies other than training are requred to maximally enhance EBP attitudes. The new organisational structure provides an oppotunity for this cultural shift to occur.

Early intervention services of children with physical disabilities: complexity of child and family needs.

BACKGROUND/AIM: To gain insight into the special issues confronting parents when accessing early intervention for children with physical disabilities where child and/or family characteristics indicate complex needs within the unique Australian context. METHODS: Qualitative interviews with families receiving early intervention for their children with physical disabilities (N=10). Families with complex circumstances such as having children with high support needs, those from culturally and linguistically diverse backgrounds, and single-parent families were recruited to the study. Families where parents had mental or health issues, parents/other family members had an identified disability, and/or where families lived in regional or rural locations were also purposively sampled. RESULTS: Participants highlighted issues around (i) the nature of early intervention services provided; (ii) the ways in which services were structured; and (ii) managing their child's needs/planning into the future. Parents stressed the importance of having access to a variety of early intervention services aside from therapy. They also emphasised the need for greater clarity about what to expect from services, the intensity of therapy, other services they could access and how long they would be able to receive these. CONCLUSIONS: Despite their complex circumstances and needs, participants' experiences of accessing early intervention services were largely consistent with the broader research literature. Of the parents interviewed, those with health problems and single mothers expressed most apprehension about managing their child's needs and planning for the future.

Legal issues in end-of-life care for speech-language pathologists and social workers: A scoping review.

PURPOSE: End-of-life law governs end-of-life decision-making in clinical practice. There has been little analysis of the specific legal issues relevant to allied health professionals working in end-of-life care. METHOD: A scoping review was undertaken to identify and examine the extent, range, and nature of literature on the legal issues relevant to end-of-life practice for Australian speech-language pathologists and social workers, including current gaps. Literature was identified by searching six electronic databases, Google Scholar, the websites of relevant professional organisations and State/Territory health departments, scanning reference lists, and drawing on existing knowledge. Data charting and thematic analysis of findings was performed. RESULT: Twenty documents were included, spanning various document types. Most focused on adult clinical practice. Documents demonstrated that the two professions encounter similar legal issues. CONCLUSION: Key gaps exist in the literature. Findings will inform these professionals of the legal issues relevant to their clinical practice and inform the development of further resources.

'Can a relative override a patient's Advance Care Directive?': end-of-life legal worries of general practitioners and nurses working in aged care.

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.

Elevated type-17 cytokines are present in axial spondyloarthritis stool.

Axial spondyloarthritis (axSpA) is characterized by type-17 immune-driven joint inflammation, and intestinal inflammation is present in around 70% of patients. In this study, we asked whether axSpA stool contained Th17-associated cytokines and whether this related to systemic Th17 activation. We measured stool cytokine and calprotectin levels by ELISA and found that patients with axSpA have increased stool IL-17A, IL-23, GM-CSF, and calprotectin. We further identified increased levels of circulating IL-17A+ and IL-17F+ T-helper cell lymphocytes in patients with axSpA compared to healthy donors. We finally assessed stool metabolites by unbiased nuclear magnetic resonance spectroscopy and found that multiple stool amino acids were negatively correlated with stool IL-23 concentrations. These data provide evidence of type-17 immunity in the intestinal lumen, and suggest its association with microbial metabolism in the intestine.

A history of repeated antibiotic usage leads to microbiota-dependent mucus defects.

Recent evidence indicates that repeated antibiotic usage lowers microbial diversity and ultimately changes the gut microbiota community. However, the physiological effects of repeated - but not recent - antibiotic usage on microbiota-mediated mucosal barrier function are largely unknown. By selecting human individuals from the deeply phenotyped Estonian Microbiome Cohort (EstMB), we here utilized human-to-mouse fecal microbiota transplantation to explore long-term impacts of repeated antibiotic use on intestinal mucus function. While a healthy mucus layer protects the intestinal epithelium against infection and inflammation, using ex vivo mucus function analyses of viable colonic tissue explants, we show that microbiota from humans with a history of repeated antibiotic use causes reduced mucus growth rate and increased mucus penetrability compared to healthy controls in the transplanted mice. Moreover, shotgun metagenomic sequencing identified a significantly altered microbiota composition in the antibiotic-shaped microbial community, with known mucus-utilizing bacteria, including Akkermansia muciniphila and Bacteroides fragilis, dominating in the gut. The altered microbiota composition was further characterized by a distinct metabolite profile, which may be caused by differential mucus degradation capacity. Consequently, our proof-of-concept study suggests that long-term antibiotic use in humans can result in an altered microbial community that has reduced capacity to maintain proper mucus function in the gut.

The gut commensal Blautia maintains colonic mucus function under low-fiber consumption through secretion of short-chain fatty acids.

Beneficial gut bacteria are indispensable for developing colonic mucus and fully establishing its protective function against intestinal microorganisms. Low-fiber diet consumption alters the gut bacterial configuration and disturbs this microbe-mucus interaction, but the specific bacteria and microbial metabolites responsible for maintaining mucus function remain poorly understood. By using human-to-mouse microbiota transplantation and ex vivo analysis of colonic mucus function, we here show as a proof-of-concept that individuals who increase their daily dietary fiber intake can improve the capacity of their gut microbiota to prevent diet-mediated mucus defects. Mucus growth, a critical feature of intact colonic mucus, correlated with the abundance of the gut commensal Blautia, and supplementation of Blautia coccoides to mice confirmed its mucus-stimulating capacity. Mechanistically, B. coccoides stimulated mucus growth through the production of the short-chain fatty acids propionate and acetate via activation of the short-chain fatty acid receptor Ffar2, which could serve as a new target to restore mucus growth during mucus-associated lifestyle diseases.

Antibiotics damage the colonic mucus barrier in a microbiota-independent manner.

Antibiotic use is a risk factor for development of inflammatory bowel diseases (IBDs). IBDs are characterized by a damaged mucus layer, which does not separate the intestinal epithelium from the microbiota. Here, we hypothesized that antibiotics affect the integrity of the mucus barrier, which allows bacterial penetrance and predisposes to intestinal inflammation. We found that antibiotic treatment led to breakdown of the colonic mucus barrier and penetration of bacteria into the mucus layer. Using fecal microbiota transplant, RNA sequencing followed by machine learning, ex vivo mucus secretion measurements, and antibiotic treatment of germ-free mice, we determined that antibiotics induce endoplasmic reticulum stress in the colon that inhibits colonic mucus secretion in a microbiota-independent manner. This antibiotic-induced mucus secretion flaw led to penetration of bacteria into the colonic mucus layer, translocation of microbial antigens into circulation, and exacerbation of ulcerations in a mouse model of IBD. Thus, antibiotic use might predispose to intestinal inflammation by impeding mucus production.

Autophagy controls mucus secretion from intestinal goblet cells by alleviating ER stress.

Colonic goblet cells are specialized epithelial cells that secrete mucus to physically separate the host and its microbiota, thus preventing bacterial invasion and inflammation. How goblet cells control the amount of mucus they secrete is unclear. We found that constitutive activation of autophagy in mice via Beclin 1 enables the production of a thicker and less penetrable mucus layer by reducing endoplasmic reticulum (ER) stress. Accordingly, genetically inhibiting Beclin 1-induced autophagy impairs mucus secretion, while pharmacologically alleviating ER stress results in excessive mucus production. This ER-stress-mediated regulation of mucus secretion is microbiota dependent and requires the Crohn's-disease-risk gene Nod2. Overproduction of mucus alters the gut microbiome, specifically expanding mucus-utilizing bacteria, such as Akkermansia muciniphila, and protects against chemical and microbial-driven intestinal inflammation. Thus, ER stress is a cell-intrinsic switch that limits mucus secretion, whereas autophagy maintains intestinal homeostasis by relieving ER stress.

Limitations in health professionals' knowledge of end-of-life law: a cross-sectional survey.

BACKGROUND: Insufficient knowledge about end-of-life law can impede the provision of safe and high-quality end-of-life care. Accurate legal knowledge across health professions is critical in palliative and end-of-life settings given the reliance on multidisciplinary care. Most research has focused on doctors, finding significant knowledge gaps. The limited evidence about other health professions also suggests legal knowledge deficits. OBJECTIVE: To determine and compare levels of knowledge about end-of-life law across a broad sample of Australian health professionals and medical students, and to identify predictors of legal knowledge. METHODS: An online pre-training survey was completed by participants enrolled in a national training programme on end-of-life law. The optional survey collected demographic data and measured baseline legal knowledge and attitudes towards end-of-life law. RESULTS: Response rate was 67% (1653/2456). The final sample for analysis (n=1564, 95% of respondents), included doctors, medical students, nurses and a range of allied health professionals. Doctors and nurses had slightly higher levels of legal knowledge than did medical students and allied health professionals; all had critical knowledge gaps. Demographic and professional characteristics predicted knowledge levels, with experience of end-of-life law in practice, confidence applying law and recent continuing professional development being positively associated with legal knowledge. CONCLUSIONS: This study provides new evidence about legal knowledge across a broad range of health professions. While knowledge levels varied somewhat across professions, knowledge gaps were observed in all professional groups. Education and training initiatives to enhance knowledge of end-of-life law should be tailored to meet the specific needs of each profession.

Systematic review of early intervention programmes for children from birth to nine years who have a physical disability.

AIM: To systematically review the literature on the effectiveness of early intervention programmes for children with physical disabilities. METHODS: Twelve electronic databases were searched for articles published between 1990 and April 2008. The quality of articles was appraised using an adapted version of the Checklist for the Evaluation of Research Articles and the Physiotherapy Evidence Database (PEDro) scale. RESULTS: Ten studies were included in the review. Cross-sectional and interrupted time-series studies were of moderate methodological quality, whereas the non-randomised control trial was of moderate-to-high methodological quality. Studies differed considerably with respect to participants, types of intervention and outcomes measured. CONCLUSIONS: Positive outcomes for both children and families have resulted from early intervention. However, methodological limitations hamper a more rigorous analysis of findings across studies.

Contribution of speech and language difficulties to health-related quality-of-life in Australian children: A longitudinal analysis.

PURPOSE: The trajectory of health-related quality-of-life (HRQoL) for children aged 4-9 years and its relationship with speech and language difficulties (SaLD) was examined using data from the Longitudinal Study of Australian Children (LSAC). METHOD: Generalized linear latent and mixed modelling was used to analyse data from three waves of the LSAC across four HRQoL domains (physical, emotional, social and school functioning). Four domains of HRQoL, measured using the Paediatric Quality-of-Life Inventory (PedsQL™), were examined to find the contribution of SaLD while accounting for child-specific factors (e.g. gender, ethnicity, temperament) and family characteristics (social ecological considerations and psychosocial stressors). RESULT: In multivariable analyses, one measure of SaLD, namely parent concern about receptive language, was negatively associated with all HRQoL domains. Covariates positively associated with all HRQoL domains included child's general health, maternal mental health, parental warmth and primary caregiver's engagement in the labour force. CONCLUSION: Findings suggest that SaLD are associated with reduced HRQoL. For most LSAC study children, having typical speech/language skills was a protective factor positively associated with HRQoL.