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.

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.

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.

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.

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.

The research-policy-deliberation nexus: a case study approach.

BACKGROUND: Decision-makers tend to make connections with researchers far too late in the game of public policy, expecting to find a retail store in which researchers are busy filling shop-front shelves with a comprehensive set of all possible relevant studies that a decision-maker might some day drop by to purchase. This linear type of relation between research and policy needs to be replaced by a more interactive model that facilitates both researchers obtaining a better understanding of policy processes and policymakers being more aware and involved in the conceptualisation and conduct of research. This paper explores the role of governance in facilitating the research-policy nexus, testing a typology of research utilisation based on Murray's (Soc Policy Society 10(4):459-70, 2011) analysis that considers various degrees of researcher-policymaker deliberation in decision-making processes. The projects were all part of various evaluation efforts carried out by the researchers to explore the use of governance in health promotion activities. METHODS: Three case studies were chosen to provide some specific examples that illustrate each level of Murray's typology. The examples involve intersectoral health promotion collaborations that combine evidence-based research in health policy initiatives with various levels of researcher involvement. For all three projects, interview data was collated in the same way, coded thematically and analysed to consider the relationship between researchers and policymakers. RESULTS: Comparing the three models and their applicability to health promotion interventions, it could be observed that all programmes demonstrated successful examples of research translation. Strong governance imperatives structuring relationships led to more successful outcomes, whereby research was successfully translated into a public policy initiative that also led to improved health outcomes. The key idea across all of these models was that strong governance arrangements mitigated some of the barriers evidenced by the varying degrees of deliberation and researcher involvement in processes. CONCLUSIONS: The paper demonstrates that successful research utilisation is related to strong governance agendas and that early and ongoing involvement of relevant decision-makers and researchers in the governance processes, that is both the conceptualisation and conduct of a study, tend to be the best predictors of success.

"It's not a one operation fits all": A qualitative study exploring fee setting and participation in price transparency initiatives amongst medical specialists in the Australian private healthcare sector.

The Australian government, through Medicare, defines the type of medical specialist services it covers and subsidizes, but it does not regulate prices. Specialists in private practice can charge more than the fee listed by Medicare depending on what they feel 'the market will bear'. This can sometimes result in high and unexpected out-of-pocket (OOP) payments for patients. To reduce pricing uncertainty and 'bill shock' faced by consumers, the government introduced a price transparency website in December 2019. It is not clear how effective such a website will be and whether specialists and patients will use it. The aim of this qualitative study was to explore factors influencing how specialists set their fees, and their views on and participation in price transparency initiatives. We conducted 27 semi-structured interviews with surgical specialists. We analysed the data using thematic analysis and responses were mapped to the Theoretical Domains Framework and the Capability, Opportunity, Motivation and Behavior model. We identified several patient, specialist and system-level factors influencing fee setting. Patient-level factors included patient characteristics, circumstance, complexity, and assumptions regarding perceived value of care. Specialist-level factors included perceived experience and skills, ethical considerations, and gendered-behavior. System-level factors included the Australian Medical Association recommended price list, practice costs, and supply and demand factors including perceived competition and practice location. Specialists were opposed to price transparency websites and lacked motivation to participate because of the complexity of fee setting, concerns over unintended consequences, and feelings of frustration they were being singled out. If price transparency websites are to be pursued, specialists' lack of motivation to participate needs to be addressed.

Does more equitable governance lead to more equitable health care? A case study based on the implementation of health reform in Aboriginal health Australia.

There is growing evidence that providing increased voice to vulnerable or disenfranchised populations is important to improving health equity. In this paper we will examine the engagement of Aboriginal community members and community controlled organisations in local governance reforms associated with the Aboriginal Health National Partnership Agreements (AHNPA) in Australia and its impact on the uptake of health assessments. The sample included qualitative and quantitative responses from 188 people involved in regional governance in Aboriginal health. The study included data on the uptake of Aboriginal health assessments from July 2008 to December 2012. The study population was 83190 in 2008/9, 856986 in 2009/10, 88256 in 2010/11 and 90903 in 2011/12. Logistic regression was used to examine the relationships between organisations within forums and the regional uptake of Aboriginal health assessments. The independent variables included before and after the AHNPA, state, remoteness, level of representation from Aboriginal organisations and links between Aboriginal and mainstream organisations. The introduction of the AHNPA was associated with a shift in power from central government to regional forums. This shift has enabled Aboriginal people a much greater voice in governance. The results of the analyses show that improvements in the uptake of health assessments were associated with stronger links between Aboriginal organisations and between mainstream organisations working with Aboriginal organisations. Higher levels of community representation were also associated with improved uptake of health assessments in the AHNPA. The findings suggest that the incorporation of Aboriginal community and community controlled organisations in regional planning plays an important role in improving health equity. This study makes an important contribution to understanding the processes through which the incorporation of disadvantaged groups into governance might contribute to health equity.