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3.
J Relig Health ; 2024 Mar 25.
Article in English | MEDLINE | ID: mdl-38528276

ABSTRACT

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.

4.
Sociol Health Illn ; 2024 Feb 22.
Article in English | MEDLINE | ID: mdl-38386331

ABSTRACT

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.

7.
J Bioeth Inq ; 20(4): 651-656, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37676562

ABSTRACT

The race against COVID-19 has been intense and painful and many of us are now looking for a way to move on. We may try to seize a degree of comfort and security by convincing ourselves that we are among the "fittest"-that is, among those who have managed to survive-who can now hope for a "new-normal" time, relatively unscathed. But this isn't what we should be hoping for. Our world, and ourselves, will never be free of COVID-19 or its insidious effects. COVID-19, like climate change, is a threat multiplier and the challenges it has raised are now indelibly engraved in our vulnerable, interconnected lives. Rather than vainly hoping for a return to an imaginary, erstwhile "normal" what we need is something more fundamental: a new version of hope that embraces a courage to learn what we need to do, to enable us to live a future to which we aspire. Perhaps counter-intuitively, we need to accept that the COVID-19 experience has already changed us deeply and hope that we can learn from this and from the future changes that the pandemic will give rise to. We need to radicalize our responses to the challenges, enabling ourselves to learn new lessons about old but increasingly pertinent topics, such as the realities of human fragility, and inter-connection.


Subject(s)
COVID-19 , Courage , Humans , Palliative Care , Climate Change , Pandemics
8.
J Bioeth Inq ; 20(4): 575-583, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37697176

ABSTRACT

Intense public interest in scientific claims about COVID-19, concerning its origins, modes of spread, evolution, and preventive and therapeutic strategies, has focused attention on the values to which scientists are assumed to be committed and the relationship between science and other public discourses. A much discussed claim, which has stimulated several inquiries and generated far-reaching political and economic consequences, has been that SARS-CoV-2 was deliberately engineered at the Wuhan Institute of Virology and then, either inadvertently or otherwise, released to the public by a laboratory worker. This has been pursued despite a clear refutation, through comprehensive genomic analysis, of the hypothesis that the virus was deliberately engineered and the failure of detailed investigations to identify any evidence in support of a laboratory leak. At the same time a substantial, established body of knowledge about the many factors underlying the emergence of novel zoonotic diseases has been largely ignored-including climate change and other mechanisms of environmental destruction, tourism, patterns of trade, and cultural influences. The existence and conduct of these debates have raised questions about the vulnerability of science to manipulation for political purposes. Scientific discourses are vulnerable because: (i) claims can be made with no more than probabilistic force; (ii) alleged "facts" are always subject to interpretation, which depends on social, ethical, and epistemological assumptions; and (iii) science and scientists are not inherently committed to any single set of values and historically have served diverse, and sometimes perverse, social and political interests. In the face of this complexity, the COVID-19 experience highlights the need for processes of ethical scrutiny of the scientific enterprise and its strategic deployment. To ensure reliability of truth claims and protection from corrupting influences robust ethical discourses are required that are independent of, and at times even contrary to, those of science itself.


Subject(s)
COVID-19 , Humans , SARS-CoV-2 , Reproducibility of Results
11.
Curr Treat Options Oncol ; 24(10): 1351-1364, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37535255

ABSTRACT

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.

12.
Support Care Cancer ; 31(7): 440, 2023 Jul 03.
Article in English | MEDLINE | ID: mdl-37395843

ABSTRACT

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.


Subject(s)
Communication , Neoplasms , Humans , Caregivers , Negotiating , Hospitals , Self-Help Groups , Qualitative Research , Neoplasms/therapy
13.
Intern Med J ; 53(12): 2180-2197, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37029711

ABSTRACT

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.


Subject(s)
Neoplasms , Suicide, Assisted , Adult , Humans , Neoplasms/therapy , Palliative Care/methods , Prognosis , Uncertainty
14.
J Bioeth Inq ; 20(2): 295-313, 2023 06.
Article in English | MEDLINE | ID: mdl-37014484

ABSTRACT

Gerrit Lindeboom's biography, Herman Boerhaave: The Man and His Work, presents a heroic account of Herman Boerhaave's life and his many contributions to medicine and medical education. He is portrayed as an outstanding eighteenth century educator who introduced into Leiden's Medical School a novel method of clinical teaching that was to be widely adopted and today remains at the centre of medical student instruction. Lindeboom's historiography induced a resurgence of interest in Boerhaave, a renewal of the myth concerning Boerhaave's innovative teaching and the publication of many acclamatory articles and false epithets, and several critical analyses. Such varying responses prompted this critical examination of the extant Boerhaavian literature, an appraisal of Lindeboom's objectivity and an assessment of his representations of Boerhaave's clinical teaching. In doing so, the moral nature of his historiography and that of those who were to sustain his assertions will be established, and the myth that surrounds the novelty and excellence of Boerhaave's clinical teaching will be evident.


Subject(s)
Education, Medical , Historiography , Medicine , Humans , Male
15.
Intern Med J ; 53(4): 462-464, 2023 04.
Article in English | MEDLINE | ID: mdl-37070768
16.
Aust N Z J Obstet Gynaecol ; 63(3): 473-475, 2023 06.
Article in English | MEDLINE | ID: mdl-36973230

ABSTRACT

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.


Subject(s)
Public Health , Uterine Cervical Neoplasms , Humans , Female , Early Detection of Cancer , Uterine Cervical Neoplasms/diagnosis
17.
J Bioeth Inq ; 20(4): 571-574, 2023 12.
Article in English | MEDLINE | ID: mdl-38165557
19.
J Bioeth Inq ; 19(1): 97-100, 2022 03.
Article in English | MEDLINE | ID: mdl-35362918

ABSTRACT

This article reflects on the assumption underlying the argument of Little et al. that "contested understandings" in the clinic are susceptible to reconciliation within a liberal framework described as "pragmatic pluralism". It is argued that no such reconciliation is possible or desirable because it is of the nature of the clinic that it provides a forum for multiple voices, ethical and cultural perspectives, and conceptual frameworks, and this is the source of its fecundity and creativity. Medicine itself cannot be represented by a single discourse, precisely because it is itself an unruly collection of practices that, despite their heterogeneity, are able to engage in productive dialogues with each other. The heteroglossia of the clinic, therefore, is not a problem to be overcome. Rather, it is a rich resource to be mobilized in accordance with its multiple inherent purposes.


Subject(s)
Morals , Philosophy , Cultural Diversity , Humans
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