Clinician perspectives on voluntary assisted dying and willingness to be involved: a multisite, cross-sectional survey during implementation in New South Wales, Australia.

BACKGROUND: In the context of nationwide law reform, New South Wales (NSW) became the last state in Australia to legalise voluntary assisted dying (VAD) - commencing 28 November 2023. Clinicians have divergent views regarding VAD, with varying levels of understanding, support, and willingness to be involved, and these may have a significant impact on the successful implementation. AIMS: To understand levels of support, understanding and willingness to be involved in VAD among clinical staff across NSW during implementation of VAD. METHODS: A multisite, cross-sectional online survey of clinicians across four local health districts, assessing relevant demographics, awareness of and support for VAD legislation and willingness to be involved in different levels of VAD-related clinical activities. RESULTS: A total of 3010 clinical staff completed the survey. A majority of participants were aware of VAD legislation in NSW (86.35%) and supportive of it (76%), with nursing and allied health clinicians significantly more likely than medical specialists to express support. Among medical specialists, support was statistically more likely in those who did not care for patients at the end of life and those with limited knowledge of the legislation. Willingness of medical specialists to perform key roles was significantly lower, with 41.49% willing to act in coordinating or consulting roles, and only 23.21% as administering practitioners. CONCLUSIONS: The majority of clinical staff surveyed across NSW supported VAD legislation. While many eligible clinicians were reluctant to be actively involved, sufficient numbers appear willing to provide VAD services, indicating that successful implementation should be possible.

Raising the Dead? Limits of CPR and Harms of Defensive Practices.

We describe the case of an eighty-four-year-old man with disseminated lung cancer who had been receiving palliative care in the hospital and was found by nursing staff unresponsive, with clinically obvious signs of death, including rigor mortis. Because there was no documentation to the contrary, the nurses commenced cardiopulmonary resuscitation and called a code blue, resulting in resuscitative efforts that continued for around twenty minutes. In discussion with the hospital ethicist, senior nurses justified these actions, mainly citing disciplinary and medicolegal concerns. We argue that moral harms arise from CPR performed on a corpse and that legal concerns about failing to perform it are unfounded. We contend that such efforts are an unintended consequence of managerialist policies mandating do-not-resuscitate orders and advance care plans and of defensive practices that can value the interests of institutions and practitioners over those of patients. Health management teaching should include managerialism and its pitfalls, while clinician training should prioritize ethical reasoning and legal knowledge over defensive practice.

Beyond platitudes: a qualitative study of Australian Aboriginal people's perspectives on biobanking.

BACKGROUND: Biobanks are vital resources for genetics and genomics, and it is broadly recognised that for maximal benefit it is essential that they include samples and data from diverse ancestral groups. The inclusion of First Nations people, in particular, is important to prevent biobanking research from exacerbating existing health inequities, and to ensure that these communities share in the benefits arising from research. AIMS: To explore the perspectives of Australian Aboriginal people whose tissue - or that of their family members - has been stored in the biobank of the National Centre for Indigenous Genomics (NCIG). METHODS: Semi-structured interviews with 42 Aboriginal people from the Titjikala, Galiwinku, Tiwi Islands, Yarrabah, Fitzroy Crossing, Derby, One Arm Point and Mulan communities, as well as a formal discussion with A. Hermes, an Indigenous Community Engagement Coordinator at the NCIG who had conducted the interviews. The interviews and the structured discussion were double coded using a procedure informed by Charmaz's outline of grounded theory analysis and Morse's outline of the cognitive basis of qualitative research. RESULTS: In this article, we report on A. Hermes' interviews with members from the above Aboriginal communities, as well as on her personal views, experiences, and interpretations of the interviews she conducted with other community members. We found that participation in the NCIG biobank raised issues around broken trust, grief and loss, but also - somewhat unexpectedly - was perceived as a source of empowerment, hope and reconnection. CONCLUSIONS: This research reminds us (again) of the need to engage deeply with communities in order to respond appropriately with respect for their cultural values and norms, and to develop culturally relevant policies and processes that enhance the benefits of biobank participation and minimise potential harms.

Biobank networking and globalisation: perspectives and practices of Australian biobanks.

Objective This study examined the practices and attitudes of Australian biobanks regarding access to samples and data, as well as local and global networking with other biobanks. Methods This was a mixed-methods study, including an online survey of Australian biobank administrators and qualitative interviews with survey participants. The survey examined the criteria applied when considering requests to share or network. The interviews explored attitudes and practices regarding sharing and networking. Results Most (90.9%; 30/33) biobanks offered access to their samples and data to others, principally for research (90.6%; 29/32). The most common criteria used to evaluate access requests included ethical oversight (84.8%; 28/33), scientific merit (84.8%; 28/33) and intended use (81.8%; 27/33). Just over two-thirds (69.7%; 23/33) of biobanks participated in Australian networks, and 39.1% (9/23) participated in global networks. Networking took the form of both sharing standardised operating procedures and policies (60.9%) and sharing samples and data (43.5%). Thirteen of the 16 interviewees participated in networks. Motivations for sharing included scientific necessity, sharing expertise and standardising operations and governance. Significant barriers to networking remain, including insufficient resources, inconsistent regulations and procedures, and cultural and political issues to do with the conduct of research. Conclusions Many Australian biobanks are already active participants in various types of global biobanking. If biobanks are to expand and make the most of their involvement in global networks, then important barriers need to be overcome. What is known about the topic? Biobanks that store human tissue and associated data are increasingly forming local, national and global networks. These networks create opportunities for enhancing the utility and sustainability of biobanks, but also raise considerable technical, legal and ethical challenges. What does this paper add? This paper reports findings from a mixed-methods study of Australian biobanks and reveals contemporary practices and perspectives concerning sample and data sharing, as well as local and global networking. It found most Australian biobanks currently take part in these activities. What are the implications for practitioners? Many Australian biobanks are networking in various ways across regional and national borders. A better understanding of current practices and views on significant and emerging issues is relevant to the diverse range of biobank stakeholders involved in any agenda to expand biobank networking, including patients, consumers, clinicians, scientists, policy makers and regulators.

Examining diversity in public willingness to participate in offshore human biobanking: An Australian mixed methods study.

To ensure their sustainability and scientific utility, human biobanks are networking internationally. Sharing biospecimens and associated data across jurisdictions raise a number of practical, ethical, legal and social challenges that could reduce the publics' willingness to donate their much needed tissue for research purposes. This research aims to identify the impact of biobank location on willingness to donate through a national quantitative survey (n = 750) and 16 in-depth interviews. A latent class analysis in combination with qualitative results suggests that a large proportion of Australians are willing to donate and/or allow their tissue to be stored offshore to help others, but others are reluctant due to uncertainty around foreign ethical and regulatory standards and the loss of potential local benefits. The results highlight for the first time the diversity of public views, and provide important guidance for policy makers and science communicators eager to tailor strategies for specific publics.

Public trust and global biobank networks.

BACKGROUND: Biobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust. METHODS: We report the results of an Australian study examining public attitudes to the networking and globalisation of biobanks. The study used quantitative and qualitative methods in conjunction with bioethical analysis in order to determine factors that may contribute to, and threaten, trust. RESULTS: Our results indicate a generally high level of trust in biobanks and in medical research more broadly. Key factors that can reduce perceived trustworthiness of biobanks are commercialisation and involvement in global networking. CONCLUSIONS: We conclude that robust ethical oversight and governance standards can both promote trust in global biobanking and ensure that this trust is warranted.

Rates of use of community treatment orders in Australia.

OBJECTIVES: The variable and changing rates of use of involuntary community treatment orders (CTOs) in the treatment of people living with mental illness are not well-documented or well understood. This new study sought to determine contemporary rates of use in Australia, where local jurisdictions were previously shown to have varied and shifting rates of use that were high by world standards. METHODS: Australian state and territory mental health review tribunals, health departments, and/or offices of the chief psychiatrist were surveyed for the most recent published annual data on the total number of individual people placed on a CTO and/or the total number of CTOs made. FINDINGS: Contemporary rates of CTO use in Australia range from 40.0 per 100,000 population (in Western Australia) to 112.5 per 100,000 (in South Australia). Since the last national survey, the rates of people subject to CTOs fell into in two jurisdictions (Victoria and Western Australia). However, rates of CTOs made were higher than previous figures in all jurisdictions reporting data. Use of CTOs in Australia varies considerably within and between jurisdictions. CONCLUSIONS: Australian jurisdictions continue to use CTOs at high and varying rates, despite unresolved questions about their role and impact. Transparency and accountability around their use would be improved by regular and nationally uniform public reporting of CTO data. Further research into how and why CTOs are used may also provide opportunities to respond to factors driving their use and thereby reduce the use of coercion in mental health care.

Community treatment orders: towards a new research agenda.

OBJECTIVES: The aim of this study was to report on a half-day multi-stakeholder symposium on community treatment orders (CTOs) hosted by the Melbourne Social Equity Institute (MSEI), which identified research gaps and opportunities, and produced an agreed agenda for future CTO research. METHODS: The MSEI convened a symposium for 22 experts in CTO research to discuss research priorities in this field in Australasia. An independent moderator elicited views and recommendations and produced a report detailing possible research projects. RESULTS: Research on CTOs is contentious and there is a need to gather and examine information regarding both their use and utility. Due to the complexities involved, it was agreed that research should be undertaken in partnership with persons with had lived experience of mental health problems, clinicians, policymakers and other interdisciplinary stakeholders. Five key areas for future investigation were identified. CONCLUSIONS: The issues and recommendations arising from the symposium should shape the scope, nature and conduct of future research directions in the field.

How shortcomings in the mental health system affect the use of involuntary community treatment orders.

Objective The aim of the present study was to examine stakeholder perspectives on how the operation of the mental health system affects the use of involuntary community treatment orders (CTOs). Methods A qualitative study was performed, consisting of semi-structured interviews about CTO experiences with 38 purposively selected participants in New South Wales (NSW), Australia. Participants included mental health consumers (n=5), carers (n=6), clinicians (n=15) and members of the Mental Health Review Tribunal of NSW (n=12). Data were analysed using established qualitative methodologies. Results Analysis of participant accounts about CTOs and their role within the mental health system identified two key themes, namely that: (1) CTOs are used to increase access to services; and (2) CTOs cannot remedy non-existent or inadequate services. Conclusion The findings of the present study indicate that deficiencies in health service structures and resourcing are a significant factor in CTO use. This raises questions about policy accountability for mental health services (both voluntary and involuntary), as well as about the usefulness of CTOs, justifications for CTO use and the legal criteria regulating CTO implementation. What is known about this topic? Following the deinstitutionalisation of psychiatric services over recent decades, community settings are increasingly the focus for the delivery of mental health services to people living with severe and persistent mental illnesses. The rates of use of involuntary treatment in Australian community settings (under CTOs) vary between state and territory jurisdictions and are high by world standards; however, the reasons for variation in rates of CTO use are not well understood. What does this paper add? This paper provides an empirical basis for a link between the politics of mental health and the uptake and usefulness of CTOs. What are the implications for practitioners? This paper makes explicit the real-world demands on the mental health system and how service deficiencies are a significant determinant in the use of CTOs. Practitioners and policy makers need to be candid about system limitations and how they factor in clinical and legal justifications for using involuntary treatment. The results of the present study provide data to support advocacy to improve policy accountability and resourcing of community mental health services.

Psychiatry and the 'Gay Holocaust' - the lessons of Jill Soloway's Transparent.

OBJECTIVE: We aim to consider issues relevant to psychiatry raised by the television series, Transparent. CONCLUSIONS: Psychiatry's disturbing history regarding the lesbian, gay, bisexual, transgender and intersex (LGBTI) community shares many aspects with the group's persecution by the National Socialist regime in Germany. The medicalised 'otherness' conferred on LGBTI patients, latent homophobia and transphobia, and lack of culturally sensitive clinical services for these people represent a major ethical challenge for modern Australasian psychiatry.

The Contemporary Significance of the Holocaust for Australian Psychiatry.

In this paper we survey briefly the components of the Holocaust directly relevant to the psychiatric profession and identify the main themes of relevance to contemporary psychiatry. The 'euthanasia' program; the persecution of lesbian, gay, bisexual, transgender, and intersex (LGBTI) citizens; and the complex relationship between the psychiatric profession and Nazi state are the main themes to emerge from this survey. We then compare this period with key themes in the history of Australian psychiatry and link these themes to some of the contemporary ethical challenges the profession faces.

Involuntary psychiatric treatment in the community: general practitioners and the implementation of community treatment orders.

BACKGROUND: There are no data about general practitioners' (GPs') involvement in involuntary psychiatric community treatment orders (CTOs). We examined stakeholder perspectives on the GP's role in this area. METHODS: Semi-structured interviews were conducted around CTO experiences with 38 participants: patients, carers, clinicians and Mental Health Review Tribunal members. Data were analysed using established qualitative methodologies. RESULTS: Sixteen participants specifically spoke about GPs. The analysis identified four themes in their accounts: GPs as 'instruments' of CTOs; GPs as primary caregivers within a CTO; GPs as 'outsiders'; and practical challenges for GPs. Within these themes, participants identified the value of GPs in the provision of care for people living with severe and persistent mental illness, the challenges of coercive processes and the dangers of GPs being isolated from them. DISCUSSION: GPs play an important role in the implementation of CTOs. Failure to better integrate GPs in the care of people on CTOs appears to be a significant shortcoming of its implementation.

The many faces of risk: a qualitative study of risk in outpatient involuntary treatment.

OBJECTIVE: This study aimed to derive a conceptualized model of risk in outpatient involuntary psychiatric treatment that has utility and meaning for stakeholders. METHODS: Thirty-eight participants-patients, caregivers, clinicians, and legal decision makers-participated in qualitative interviews about their experiences of outpatient involuntary psychiatric treatment. Interview data were analyzed by using a general inductive method. RESULTS: Six types of risk were identified: actual harm, social adversity, therapeutic outcome or compromised treatment, the system, interpersonal distress, and epistemic issues. There were overlaps between discourses on risk but variation in how different aspects of risk were emphasized by participant groups. CONCLUSIONS: A comprehensive model of risk contextualized to outpatient involuntary treatment is proposed. It incorporates domains of risk of harm to self or others, risk of social adversity, risk of excess distress, and risk of compromised treatment. This model may have instrumental value in the implementation and the scrutiny of risk-based mental health laws.

The epistemic challenges of CTOs: Commentary on . . . Community treatment orders.

Controversy around the use of community treatment orders (CTOs) arises in part from their ambiguous evidence base. Recent research has provided valuable new insights into the effects of CTOs, while also highlighting the critical importance of first understanding what CTOs are and what they are meant to achieve. A genuine public discourse on the significance of CTOs will have multiple perspectives. This necessitates a more pluralistic approach to constructing the necessary knowledge of CTOs to enable communities to make sound decisions about their use.

The lived experience of involuntary community treatment: a qualitative study of mental health consumers and carers.

OBJECTIVE: To describe the lived experiences of people subject to community treatment orders (CTOs) and their carers. METHOD: We recruited 11 participants (five mental health consumers and six carers) through consumer and carer networks in NSW, Australia, to take part in interviews about their experiences. We analysed the interview data set using established qualitative methodologies. RESULTS: The lived experiences were characterised by 'access' concerns, 'isolation', 'loss and trauma', 'resistance and resignation' and 'vulnerability and distress'. The extent and impact of these experiences related to the severity of mental illness, the support available for people with mental illnesses and their carers, the social compromises associated with living with mental illness, and the challenges of managing the relationships necessitated by these processes. CONCLUSIONS: The lived experience of CTOs is complex: it is one of distress and profound ambivalence. The distress is an intrinsic aspect of the experience of severe mental illness, but it also emerges from communication gaps, difficulty obtaining optimal care and accessing mental health services. The ambivalence arises from an acknowledgement that while CTOs are coercive and constrain autonomy, they may also be beneficial. These findings can inform improvements to the implementation of CTOs and the consequent experiences.

Community treatment orders in Australia: rates and patterns of use.

OBJECTIVES: Community treatment orders (CTOs) allow clinicians to provide unconsented outpatient treatment to people living with mental illness. Though controversial and of uncertain efficacy, CTOs are used throughout Australia and internationally. We sought to determine the prevalence of CTO use in Australian states and territories, and to examine changes in the pattern of use over time. METHOD: Australian state and territory mental health review tribunals and health departments were surveyed for the most recent annual data on the total number of CTOs made and the total number of individual people placed on a CTO. RESULTS: Rates of CTO use range from 30.2 per 100,000 population (in Tasmania) to 98.8 per 100,000 population (in Victoria). Use of CTOs in Australia is high by world standards, appears to be increasing over time, and varies significantly across jurisdictions. CONCLUSIONS: The high (by world standards), increasing and variable use of CTOs in Australia is concerning and raises important implications for mental health policymakers and legislators. Current mental health policy activity, particularly the new National Mental Health Commission, provides a unique opportunity to enhance transparency and accountability if regular and nationally uniform CTO data are collected and publically reported.

Out of sight, out of mind: making involuntary community treatment visible in the mental health system.

Most specialised mental health services in Australia are delivered in community settings and one in six services comprise involuntary treatment. Despite a growing demand for community treatment orders (CTOs) worldwide - and comparatively high rates of use in Australia - the clinical, legal and ethical aspects of CTOs remain contentious. This article examines federal, state and territory mental health policy documents and discovers little reference to CTOs. The "invisibility" of CTOs in mental health policy raises questions about the transparency and accountability of the mental health system, and about whether this policy silence ultimately entrenches the marginalisation of, and discrimination against, people living with mental illness.