Choreographing a good death: Carers' experiences and practices of enacting assisted dying.

The proliferation of assisted dying legislative reforms globally is a significant change in the social and medico-legal landscape of end-of-life care. Understanding the impacts of these legislative reforms on family members who care for a dying person is vital, yet under-theorised in research. In this article, drawing on semi-structured interviews with 42 carers for a person who has sought assisted dying in Australia, and extending ideas of ontological choreography we explore the new and complex choreographies enacted by carers in their endeavour to arrange a 'good death' for the dying person. We find that desires to fulfil the dying person's wishes are often accompanied by normative pressures, affective tensions and complexities in bereavement. Enacting assisted dying requires carers to perform a repertoire of highly-staged practices. Yet, institutional obstacles and normative cultural scripts of dying can constrain carer assisted dying practices. Understanding the nuances of carers' experiences and how they navigate this new end-of-life landscape, we argue, provides critical insights about how assisted dying legislation is producing new cultural touchpoints for caring at the end of life. Moreover, we show how emerging cultural scripts of assisted dying are impacting in the lives of these carers.

Attitudes to End-of-Life Care and Voluntary Assisted Dying Amongst Members of the Australian Jewish community.

The implementation of voluntary assisted dying (VAD) in the Australian State of Victoria in 2019 has stimulated discussions about end-of-life care and dying in many communities. Various attempts have been made to represent the attitudes of the Jewish community, a distinct culturally and linguistically diverse (CALD) group, in terms that suggest a unified set of opinions that opposes VAD policies. This research aimed to explore attitudes to VAD in the context of end-of-life care held by members of the Victorian Jewish community. A descriptive qualitative methodological design was employed. Ten Victorians who identify as Jewish were recruited and participated in in-depth, semi-structured interviews. Reflexive thematic analysis was carried out on the transcripts to identify key themes, attitudes and preferences in relation to end-of-life care, death and dying, and VAD. Three themes were identified: "complexity and variation", "similarities", and "factors influencing attitudes to VAD and end-of-life care". A significant degree of diversity was apparent, ranging from highly supportive of VAD to advocacy for a total repeal of the policy. The results indicate that images of how Victorian Jewish individuals feel towards VAD based on essentialised notions about the community and belief systems are not supported by the evidence. In reality, considerable diversity of attitudes exists towards VAD and end-of-life care. We conclude that it is important that policymakers and members of the broader society avoid stereotypes that falsely characterise this specific community and, by implication, other CALD groups, particularly in terms that ignore internal diversity regarding belief systems, social attitudes and ethical perspectives.

Voluntary Assisted Dying/Euthanasia: Will This Have an Impact on Cancer Care in Future Years?

OPINION STATEMENT: In considering the impact of medically hastened death (MHD) on cancer care, a wide range of variables needs to be considered including demographic factors, diagnoses, local cultural factors, and the legislative frameworks in place. Here, we present a synthesis of recently available published literature and empirical data collected following legislative change to enable MHD in Victoria, Australia to explore in detail the potential impact of MHD on cancer care with a focus on patients/families and professional groups. Our findings reveal that for patients and families, both physical and existential distress frequently underlie MHD requests, with the latter less readily recognised by health professionals. The responses of those around the patient making the request may have a very significant impact on relationships within families and upon the nature of the subsequent bereavement. For palliative care, while differing views may remain, it appears that there has been some accommodation of MHD into or alongside practice over time. The recognition of a shared commitment to relief of suffering of palliative care and MHD appears a helpful means of establishing how these practices may co-exist. In cancer practice more broadly, as individual professionals reflect upon their own roles, new relationships and pathways of patient movement (or referral) must be established in response to patients' requests. Our findings also highlight many unanswered questions in understanding the impact of MHD, including that upon those dying who choose not to access MHD, First Nations peoples, the participating health professionals' longer term, and the relief of suffering itself. A systematic approach to the evaluation of MHD legislation must be adopted in order to understand its full impact. Only then could it be determined if the aspirations for such legislative change were being met.

'It's communication between people who are going through the same thing': experiences of informal interactions in hospital cancer treatment settings.

PURPOSE: In hospital settings, patients, visitors, and staff engage in many interactions outside formal clinical encounters. Whilst many of these may be inconsequential, others contribute significantly to how patients and their carers experience cancer and its treatment. This article aims to explore the experiences and significance of interactions that occur outside formal clinical encounters in hospital cancer treatment settings. METHODS: Semi-structured interviews were conducted with cancer patients, carers, and staff recruited from two hospital sites and cancer support groups. Hermeneutic phenomenology informed lines of questioning and data analysis. RESULTS: Thirty-one people participated in the study: 18 cancer patients, four carers, and nine staff members. The experiences of informal interactions were grouped into three themes: connecting, making sense, and enacting care. The participants described how these encounters allowed connection with others in the hospital spaces, facilitating a sense of belonging, normality, and self-worth. Through these interactions, individuals participated in making sense of their experiences, to better anticipate the decisions and challenges that might lie ahead. By connecting with other individuals, they cared for others and felt cared for themselves, and were able to learn from, teach, and support each other. CONCLUSIONS: Outside the confines of the clinical discourses participants negotiate terms of engagement, sharing of information, expertise, and their own personal stories that they may employ to contribute to the individuals around them. These interactions occur within a loose and evolving framework of social interactions, an 'informal community', in which cancer patients, carers, and staff members play active and meaningful roles.

A review of the utility of prognostic tools in predicting 6-month mortality in cancer patients, conducted in the context of voluntary assisted dying.

BACKGROUND: Eligibility to access the Victorian voluntary assisted dying (VAD) legislation requires that people have a prognosis of 6 months or less (or 12 months or less in the setting of a neurodegenerative diagnosis). Yet prognostic determination is frequently inaccurate and prompts clinician discomfort. Based on functional capacity and clinical and biochemical markers, prognostic tools have been developed to increase the accuracy of life expectancy predictions. AIMS: This review of prognostic tools explores their accuracy to determine 6-month mortality in adults when treated under palliative care with a primary diagnosis of cancer (the diagnosis of a large proportion of people who are requesting VAD). METHODS: A systematic search of the literature was performed on electronic databases Medline, Embase and Cinahl. RESULTS: Limitations of prognostication identified include the following: (i) prognostic tools still provide uncertain prognoses; (ii) prognostic tools have greater accuracy predicting shorter prognoses, such as weeks to months, rather than 6 months; and (iii) functionality was often weighted significantly when calculating prognoses. Challenges of prognostication identified include the following: (i) the area under the curve (a value that represents how well a model can distinguish between two outcomes) cannot be directly interpreted clinically and (ii) difficulties exist related to determining appropriate thresholds of accuracy in this context. CONCLUSIONS: Prognostication is a significant aspect of VAD, and the utility of the currently available prognostic tools appears limited but may prompt discussions about prognosis and alternative means (other than prognostic estimates) to identify those eligible for VAD.

Changing times in public health: The new wave of self-collection of invasive samples.

Testing in public health programs has long been recognised as beneficial but has often been experienced by community members as intrusive and paternalistic. Cervical screening has been seen as even more threatening by women who have experienced sexual violence or come from culturally and linguistically diverse communities. A simple and natural solution to these formidable barriers, increasingly recognised in recent years, has been presented by the advent of self-testing. This article recounts the struggle to encourage medical practitioners to accept patient self-testing. It emphasises the importance of scrutinising our own personal prejudices, listening to the community, and being open to novel strategies that ensure inclusiveness and respect for those whose interests we are seeking to serve.

First Nations Perspectives in Law-Making About Voluntary Assisted Dying.

Voluntary assisted dying laws have now been enacted in all six Australian States with reform being considered in the remaining two. While there is an emerging body of literature examining various aspects of regulation, there has been scant consideration of what these reforms mean for First Nations peoples, and to what extent their experiences have been considered in the process of developing legislation. This article provides a critical analysis of how Indigenous perspectives both contributed to, and were engaged with, during the law reform processes in Victoria and Western Australia, the first two States to grapple with this topic. Findings reveal the sophistication in how Indigenous organisations and individuals engaged with this issue and highlight the critical importance of not universalising Indigenous perspectives. Significantly, there was much greater engagement with Indigenous views in Western Australia than in Victoria. We conclude by considering how Indigenous voices can meaningfully influence Australian law reform processes.

COVID-19 restrictions should only be lifted when it is safe to do so for Aboriginal communities.

The NSW Government has proposed a blanket lifting of COVID-19 restrictions when the proportion of fully vaccinated people rate reaches 70% of the adult population. If implemented, this would have devastating effects on Aboriginal populations. At the present time, vaccination rates in Aboriginal communities remain low. Once restrictions are lifted, unvaccinated people will be at high risk of infection. The risks of serious illness and death among Aboriginal people from a variety of medical conditions are significantly greater than for the wider population. This is also the case with COVID-19 in First Nations populations around the world. The vulnerability of Aboriginal people is an enduring consequence of colonialism and is exacerbated by the fact that many live in overcrowded and poorly maintained houses in communities with under-resourced health services. A current workforce crisis and the demographic structure of the population have further hindered the effectiveness of vaccination programmes. Aboriginal organisations have called on state and federal governments to delay any substantial easing of restrictions until full vaccination rates among Aboriginal and Torres Strait Islander populations aged 16 years and older reach 90-95%. They have also called for additional support in the form of supply of vaccines, enhancement of workforce capacity and appropriate incentives to address hesitancy. Australia remains burdened by the legacy of centuries of harm and damage to its First Nations people. Urgent steps must be taken to avoid a renewed assault on Aboriginal and Torres Strait Islander health.

Can depressed patients make a decision to request voluntary assisted dying?

Depressive symptoms, including those as part of a major depressive disorder, are common at the end of life. A number of psychiatrists consider that a diagnosis of major depression precludes the capacity to make a decision to request voluntary assisted dying (VAD), although this is not a unanimous view. This paper uses a case of a patient in which two different psychiatric opinions were formed regarding her capacity to make the decision to request VAD. The difference of view can be related to whether major depression was diagnosed and the association made between depression and the capacity to request VAD. The view that an absence of major depression is required in order to establish the capacity to request VAD is potentially at odds with the legal definition and not necessarily in keeping with the patient's experience at the end of life.

Understanding the ethical implications of the rituals of medicine.

Rituals may be understood broadly as stereotyped behaviours carrying symbolic meanings, which play a crucial role in defining relationships, legitimating authority, giving meaning to certain life events and stabilising social structures. Despite intense interest in the subject, and an extensive literature, relatively little attention has been given to the nature, role and function of ritual in contemporary medicine. Medicine is replete with ritualistic behaviours and imperatives, which play a crucial role in all aspects of clinical practice. Rituals play multiple, complex functions in clinical interactions and have an important role in shaping interactions, experiences and outcomes. Longstanding medical rituals have been disrupted in the wake of coronavirus disease 2019 (COVID-19). Medical rituals may be evident or invisible, often overlap with or operate alongside instrumentalised practices, and play crucial roles in establishing, maintaining and guaranteeing the efficacy of clinical practices. Rituals can also inhibit progress and change, by enforcing arbitrary authority. Physicians should consider when they are undertaking a ritual practice and recognise when the exigencies of contemporary practice are affecting that ritual with or without meaning or intention. Physicians should reflect on whether aspects of their ritual interactions are undertaken on the basis of sentiment, custom or evidence-based outcomes, and whether rituals should be defended, continued in a modified fashion or even abandoned in favour of new behaviours suitable for and salient with contemporary practice in the interests of patient care.

Promoting ethics across the healthcare sector: what can codes achieve?

Over the course of the twentieth century, numerous national and international ethics 'codes' have been developed. While such codes serve important substantive and symbolic functions, they can also pose challenges. In this article, we discuss these challenges, noting that they fall into four main categories relating to conceptual tensions, power imbalances, organisational barriers, and threats of exploitation. We illustrate these challenges using examples provided from the United Nations Educational Scientific and Cultural Organization (UNESCO) Universal Declaration on Bioethics and Human Rights. We emphasise the importance of accountability in the development and maintenance of national and international codes and argue that, despite all their challenges, codes provide an important common language among otherwise disparate and sometimes adversarial groups, and provide visible and explicit sets of standards that may be invoked by community members to criticise and hold powerful bodies to account. This is particularly important for practitioners and researchers who belong to organisations that are signatories to codes, who can use these codes to both guide and justify ethical behaviour in the face of competing organisational, professional and political imperatives.

The struggle for gender diversity.

INTRODUCTION: Contradictory social policies and attitudes about gender diversity raise questions about how we should understand the current status of the historical 'heterosexual' gender regime. CONCLUSION: Drawing on the work of the feminist philosopher and psychoanalyst Luce Irigaray, this essay argues that sexual difference is the irreducible starting point for all meaning, sense, morality and affect.

Suicide-related Materials and Voluntary Assisted Dying.

This column discusses the potential for conflict between the Federal laws forbidding the use of telecommunications to spread "suicide-related materials" and the laws in Victoria and Western Australia which have legalised forms of voluntary assisted dying. The column argues that the effect of the State laws is to differentiate the legal forms of voluntary assisted dying from suicide and assisted suicide, with the effect that Federal prohibitions do not apply to telecommunications between health practitioners and their patients regarding voluntary assisted dying.

Conflicts of interest: new thinking, new processes.

Although the concept of 'conflict of interest' (COI) arises in many contexts in healthcare, it is often poorly understood, and commonly accepted, definitions are often circular, self-contradictory and unable to provide procedural guidance. To overcome such confusion and imprecision, we offer a reformulation of COI that carefully defines interests, clarifies their scope and articulates a simple, non-punitive approach to managing them. We define an 'interest' as 'a commitment, goal, obligation or duty related to a particular social role or practice'. We show how in a particular setting multiple interests can be at play, which can be either financial or non-financial, with the latter often being the most potent drivers of behaviour. We define a 'conflict of interest' as the condition that arises when two coexisting interests directly conflict with each other: that is, when they are likely to compel contrary and incompatible outcomes. COI therefore reflect objective states of affairs rather than internal mental states; they do not imply moral error; and they are identified through public rather than private processes involving ethical dialogues among relevant stakeholders. Once a COI has been identified, responses must be determined based on the seriousness of the conflict and the conditions that generated it. Such responses may be minimal or they may require a formal disengagement from one of the conflicting interests. The framework described, reflects the rich diversity of interests in modern societies, is universally applicable and provides simple, readily applicable guidelines for the identification and management of conflicts arising between them.

Communal responsibility: a history of health collectives in Australia.

Healthcare encompasses multiple discourses to which health professionals, researchers, patients, carers and lay individuals contribute. Networks of patients and non-professionals often act collectively to build capacity, enhance access to resources, develop understanding and improve provision of care. This article explores the concept of health collectives and three notable examples that have had an enduring and profound impact in the Australian context.