How does asking loved ones to help you die, to help you commit suicide, bend the limits of our relationships and perhaps of care itself? This paper traces the aesthetic and affective considerations of those deciding to die. Focusing on... more
How does asking loved ones to help you die, to help you commit suicide, bend the limits of our relationships and perhaps of care itself? This paper traces the aesthetic and affective considerations of those deciding to die. Focusing on ethnographic interviews with members of the British right-to die group My Death My Decision, I explore how individuals recruit loved ones and doctors to actively participate in their death through "assistance". This paper will specifically focus on what this assistance looks, or perhaps more accurately, feels like. It will question if the desire for an assisted death in which bodies, actions, and decisions touch and are touched by one another is a demand which exceeds the boundaries of "care". My Death My Decision is campaigning to legalise assisted suicide based on a belief that the individual knows when it's their time to die, regardless of a terminal diagnosis. One member, Pat, has decided that when the time comes, she will travel from London to a euthanasia center in Switzerland where, surrounded by loved ones, she can receive a "kind death" from doctors that care. Unlike colloquial uses of care, here, Pat references a relationship which is not defined by medical interventions to elongate life. This paper argues that presence and touchboth physical and emotional-can produce communal practices and ethics of care which challenge traditional expectations of biomedicine.
Introduction: Assisted dying (AD) has been legalised in a small but growing number of jurisdictions globally, including Canada and Australia. Early research in both countries demonstrates that, in response to access barriers, patients and... more
Introduction: Assisted dying (AD) has been legalised in a small but growing number of jurisdictions globally, including Canada and Australia. Early research in both countries demonstrates that, in response to access barriers, patients and caregivers take action to influence their individual experience of AD, as well as AD systems more widely. This study analyses how patients and caregivers suggest other decision-makers in AD systems should address identified issues. Methods: We conducted semistructured, qualitative interviews with patients and caregivers seeking AD in Victoria (Australia) and three Canadian provinces (British Columbia, Ontario and Nova Scotia). Data were analysed using reflexive thematic analysis and codebook template analysis. Results: Sixty interviews were conducted with 67 participants (65 caregivers, 2 patients). In Victoria, this involved 28 interviews with 33 participants (32 caregivers, 1 patient) about 28 patient experiences. In Canada, this involved 32 interviews with 34 participants (33 caregivers, 1 patient) about 33 patient experiences. We generated six themes, corresponding to six overarching suggestions by patients and caregivers to address identified system issues: (1) improved content and dissemination of information about AD; (2) proactively develop policies and procedures about AD provision; (3) address institutional objection via top-down action; (4) proactively develop grief resources and peer support mechanisms; (5) amend laws to address legal barriers; and (6) engage with and act on patient and caregiver feedback about experiences. Conclusion: AD systems should monitor and respond to suggestions from patients and caregivers with firsthand experience of AD systems, who are uniquely placed to identify issues and suggestions for improvement. To date, Canada has responded comparatively well to address identified issues, whereas the Victorian government has signalled there are no plans to amend laws to address identified access barriers. This may result in patients and caregivers continuing to take on the burdens of acting to address identified issues. Patient or Public Contribution: Patients and caregivers are central to this research. We interviewed patients and caregivers about their experiences of AD, and the article focuses on their suggestions for addressing identified barriers within AD systems. Patient interest groups in Australia and Canada also supported our recruitment process.
Assisted Lab’s letter by Anna Elsner and Vanessa Rampton is featured in The Economist as a response to its investigation ‘The Rights and Wrongs of Assisted Dying’ (13 April 2024), and the prospects for changing the law in Britain.
Background and Aims: The core ethical perplexity is that physician-assisted suicide and euthanasia (PAS/E) contradicts the core value of medical practice which is about the duty of care to preserve life. While most arguments for and... more
Background and Aims: The core ethical perplexity is that physician-assisted suicide and euthanasia (PAS/E) contradicts the core value of medical practice which is about the duty of care to preserve life. While most arguments for and against euthanasia emerge from other continents, no African country legalizes or decriminalizes PAS/E.
The practice of suicide tourism refers to the traveling of individuals to other countries to seek legally permitted assisted suicide. This study employed a descriptive qualitative research approach exploring how right-to-die organizations... more
The practice of suicide tourism refers to the traveling of individuals to other countries to seek legally permitted assisted suicide. This study employed a descriptive qualitative research approach exploring how right-to-die organizations perceive suicide tourism and its implications on the right-to-die. Five themes emerged following the analysis of 12 in-depth interviews with activists from right-to-die organizations and 13 relevant documents: (1) unequivocal attitudes toward suicide tourism; (2) relationships between the organizations and the media; (3) acting to change the legal status of the right-to-die; (4) the role of the family in interactions between the organization and the person seeking assistance; and (5) reciprocal relations between the organizations and the physicians. The findings reveal ambivalent attitudes within such organizations toward suicide tourism, inherent tension among participating physicians, and complex relationships between assisted suicide, palliative care, and the physicians’ duty to promote individual choice at end-of-life.
Perusahaan yang diteliti adalah perusahaan yang bergerak dalam bidang transportasi, melayani jasa angkutan darat baik penumpang maupun barang. Perusahaan tersebut mempunyai tagline “Journey with Pleasure” yang memiliki arti dimana... more
Perusahaan yang diteliti adalah perusahaan yang bergerak dalam bidang transportasi, melayani jasa angkutan darat baik penumpang maupun barang. Perusahaan tersebut mempunyai tagline “Journey with Pleasure” yang memiliki arti dimana pelanggan yang memanfaatkan jasa layanan kami akan merasakan kenyamanan, pelayanan dan mendapatkan kesan positif selama perjalanan. Masalah yang dihadapi perusahaan saat ini adalah kesulitan dalam mendapatkan pelanggan baru, belum ada informasi penyewaan bus secara online dan testimoni dari pelanggan terhadap pelayanan perusahaan. Tujuan penulisan ini untuk mengenalkan lebih luas profile perusahaan kepada masyarakat dengan dibuatkan sistem berbasis web dan pemberian pelayanan terbaik untuk mendapatkan kepuasan dan loyalitas pelanggan menggunakan pendekatan Electronik Customer Relationship Management (E-CRM). Dalam memodelkan kebutuhan sistem penulis menggunakan UML, database MYSQL dan untuk membuat aplikasi penulis menggunakan PHP. ...
The purpose of this dissertation is to examine the level of safeguards the Assisted Dying Bill ('ADB') provides to terminally ill persons ('TIP') and explore alternative options in enhancing the ADB's safeguard. The assisted dying... more
The purpose of this dissertation is to examine the level of safeguards the Assisted Dying Bill ('ADB') provides to terminally ill persons ('TIP') and explore alternative options in enhancing the ADB's safeguard. The assisted dying legislation of various overseas jurisdictions such as the Australian states of Western Australia and Victoria, Oregon, Canada, Netherlands, Belgium and Switzerland will be examined throughout the dissertation. Then, the ADB of these jurisdictions will be contrasted, and the appropriate provisions that might enhance the ADB's safeguard will be selected. The applicable human rights and ethical concerns regarding ADB will also be discussed. As the adequate safeguard is vital to protect the TIP and health care practitioners ('HCP') from the potential inadequacies of the ADB, additional safeguards will be argued as these are imperative in improving the current ADB and its chance to be enacted by the UK Parliament.
The recent change in Canadian law to allow access to medical assistance in dying restricts eligibility, among its other criteria, to those for whom “natural death has become reasonably foreseeable.” A recent review of certain aspects of... more
The recent change in Canadian law to allow access to medical assistance in dying restricts eligibility, among its other criteria, to those for whom “natural death has become reasonably foreseeable.” A recent review of certain aspects of the law examined the evidence pertaining to extending access to assisted dying in three particular request situations currently denied: requests by mature minors, advance requests, and requests where mental illness is the sole underlying medical condition [1]. The requirement for this review was included in the legislation that introduced medical assistance in dying in Canada. Both the original change in the law and the review itself neglected to consider those with intolerable suffering for whom natural death is not reasonably foreseeable. This paper explores the possibility that access to assisted dying should be extended by removing this limiting criterion. It also considers the ethical challenges this might present for those who work in rehabilit...
This study explores how providing assisted dying services affects the psychological distress of practitioners. It investigates the influence of professional norms that endorse such services within their field. Study 1 included... more
This study explores how providing assisted dying services affects the psychological distress of practitioners. It investigates the influence of professional norms that endorse such services within their field. Study 1 included veterinarians (N = 137, 75.2% female, M age = 43.1 years, SD age = 12.7 years), and Study 2 health practitioner students (N = 386, 71.0% female, M age = 21.0 years, SD age = 14.4 years). In both studies, participants indicated their degree of psychological distress following exposure to scenarios depicting assisted dying services that were relevant to their respective situations. In Study 1, we found that higher willingness to perform animal euthanasia was associated with lower distress, as were supportive norms. In Study 2, a negative association between a greater willingness to perform euthanasia and lower psychological distress occurred only when the provision of such services was supported by professional norms. In conclusion, psychological distress is buffered by supportive professional norms.
"Kayacan summarizes practice in Switzerland and the Netherlands in relation to the right to die, and examines major cases filed to the European Court of Human Rights on this issue. Both the Netherlands and Switzerland have greater... more
"Kayacan summarizes practice in Switzerland and the Netherlands in relation to the right to die, and examines major cases filed to the European Court of Human Rights on this issue. Both the Netherlands and Switzerland have greater experience with assisted dying than other European countries; however, Kayacan suggests there are still concerns that arise. In Switzerland, for instance, lack of regulation may become a source of concern. She explains that when evaluating cases, the Court considers both Article 2 of the European Convention on Human Rights, which is about the right to life, and Article 8 of the Convention, which is about the right to respect for private and family life. She notes that, in most cases, the Court has taken a procedural approach, giving member states the margin of appreciation."
METODOLOGI yang digunakan adalah metodologi pengumpulan data (wawancara, questioner, survey, dan studi pustaka), metode analisis (membentuk peluang pasar, formulating the marketing strategy, dan merancang pengalaman pelanggan), dan metode... more
METODOLOGI yang digunakan adalah metodologi pengumpulan data (wawancara, questioner, survey, dan studi pustaka), metode analisis (membentuk peluang pasar, formulating the marketing strategy, dan merancang pengalaman pelanggan), dan metode ...
Abstrak-Kemajuan Teknologi Informasi saat ini telah mempermudah manusia untuk memenuhi kebutuhannya, teknologi telah membantu manusia dalam berbagai hal tidak terkecuali dalam hal perdagangan. Penggunaan internet saat ini bukan hanya... more
Abstrak-Kemajuan Teknologi Informasi saat ini telah mempermudah manusia untuk memenuhi kebutuhannya, teknologi telah membantu manusia dalam berbagai hal tidak terkecuali dalam hal perdagangan. Penggunaan internet saat ini bukan hanya dimanfaatkan untuk sekedar mencari informasi, menggunakan sosial media namun dimanfaatkan juga untuk melakukan bisnis. E-Commerce merupakan pemasaran produk dengan memanfaatkan teknologi informasi khususnya komputer, handphone, laptop dan internet. Irfana Batik Tenun merupakan bisnis yang melakukan pejualan batik. Dalam melakukan aktivitasnya masih memiliki beberapa kendala diantaranya lokasi yang saat ini hanya ada satu membuat pelanggan yang iasanya dating ke lokasi sekarang banyak yang beralih untuk belanja secara online, promosi yang terbatas membuat pelanggan untuk beralih ke penjual yang mempromosikan produknya secara online. Untuk menyelesaikan masalah yang terkait dengan penjualan dan pemasaran produk pada Irfana Batik Tenun maka dibuatlah ranca...
Background: Voluntary assisted dying (VAD) was legalised in Victoria, Australia in June 2019. Physicians can now assist patients to end their lives by providing drugs for self-administration at their voluntary and competent request (or... more
Background: Voluntary assisted dying (VAD) was legalised in Victoria, Australia in June 2019. Physicians can now assist patients to end their lives by providing drugs for self-administration at their voluntary and competent request (or for physician administration in limited circumstances). This study investigates the opinions of clinicians on the implementation of the legislation in one Victorian hospital. Methods: This exploratory survey study was conducted at a 600-bed acute hospital in Melbourne, Australia in Jan 2019. 382 clinicians completed one or more qualitative questions. Participants commented on VAD, potential workplace challenges and staff support required. Free-text responses were analysed using inductive content analysis. Results: Six themes: (1) Polarised views; (2) Fear of conflict; (3) Emotional burden; (4) Vulnerable patients; (5) Organisational challenges; (6) Decision-making. There were diverse views including objections to VAD for religious or ethical reasons, ...
Patients with advanced disease sometimes express a wish to hasten death (WTHD). In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon. Since then, new... more
Patients with advanced disease sometimes express a wish to hasten death (WTHD). In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon. Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide. The aim of the present study was to update our previous review by including new research and to conduct a new analysis of available data on this topic. Eligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA. Studies of patients with life-threatening conditions that had expressed the WTHD. The search strategy combined subject terms with free-text searching of PubMed MEDLINE, Web of Science, CINAHL and PsycInfo. The qualitative synthesis followed the methodology described by Noblit and Hare...
Background: Multiple sources of regulation seek to shape euthanasia practice in Belgium, including legislation and training. This study comprehensively mapped which of these sources govern which domains of euthanasia practice, such health... more
Background: Multiple sources of regulation seek to shape euthanasia practice in Belgium, including legislation and training. This study comprehensively mapped which of these sources govern which domains of euthanasia practice, such health professionals' obligations, or managing patient requests. Method: Scoping review methodology was used to search for scholarly records which discussed Belgian euthanasia regulation. Template analysis was used to generate themes describing the domains of euthanasia practice governed by sources of regulation. Results: Of 1364 records screened, 107 records were included. Multiple sources of regulation govern each domain, which are: the permissible scope of euthanasia; the legal status of a euthanasia death; the euthanasia process; the rights, obligations, and roles of those involved; system workings; and support for health professionals who provide euthanasia. Conclusions: Domains with significant yet fragmented regulation may lead to inconsistent care provision. Policymakers should develop coherent guidance to support health professionals to navigate this regulatory landscape.
TRUSTWORTHY_ID merupakan unit usaha yang menjual produk sepatu casual, sneakers dan sports, promosi yang ada masih menggunakan kertas, dan saluran whatshapp. Sampai saat ini TRUSTWORTHY_ID cara penjualannya menggunakan konvensional kuno... more
TRUSTWORTHY_ID merupakan unit usaha yang menjual produk sepatu casual, sneakers dan sports, promosi yang ada masih menggunakan kertas, dan saluran whatshapp. Sampai saat ini TRUSTWORTHY_ID cara penjualannya menggunakan konvensional kuno dan proses pemindahan transaksi dari jurnal ke buku besar. Maka peneliti menerapkan atau membuat aplikasi penjualan online (e-commerce) yang dapat menyelesaikan permasalahan yang ada, memangkas biaya promosi, validnya membuat laporan, tidak terbatas oleh ruang dan waktu sehingga mempermudah transaksi antara pelanggan dan TRUSTWORTHY_ID. Tujuan penelitian ini sebagai permasalahan penjualan produk yang dilakukan secara manual menjadi terkomputerisasi dan berbasis online melalui e-commerce. Dirancangnya sistem informasi penjualan secara online yang memanfaatkan teknologi diharapkan dapat mendukung penjualan yang lebih efisien dan berdampak positif pada tingkat penjualannya karena mampu bersaing dengan toko yang lain. Cara pengimplementasianya, peneliti...
In 1963 Michel Foucault writes that his book “The Birth of the Clinic” is about space, language, and death, about perception. There is a shift of societal problems to the field of medicine, in other words, modernity formulates some social... more
In 1963 Michel Foucault writes that his book “The Birth of the Clinic” is about space, language, and death, about perception. There is a shift of societal problems to the field of medicine, in other words, modernity formulates some social problems through medical categories. But in fact, questions that seem purely medical are often a product of social factors. In society, medicine is a conservative force that maintains the status quo and distracts from major threats to human health. The growth of individualism, the desire for autonomy, and the decline of religiosity allow discussions around death, tolerance of mystery, and euthanasia. For example, in Canada, 2021 marks five full years of access to medical assistance in dying. In 2021, there were 10 064 cases, bringing the total number to 31 664. Annual growth continues to increase steadily each year. Are the major religions capable of facing that challenge?
On 19 June 2019, voluntary assisted dying became operational in Victoria, Australia, via the Voluntary Assisted Dying Act 2017 (Vic). Some evidence has emerged of barriers to accessing voluntary assisted dying in Australia. Drawing on the... more
On 19 June 2019, voluntary assisted dying became operational in Victoria, Australia, via the Voluntary Assisted Dying Act 2017 (Vic). Some evidence has emerged of barriers to accessing voluntary assisted dying in Australia. Drawing on the findings from qualitative interviews we conducted with a patient and family caregivers in Victoria, we investigate how actions taken by patients and family caregivers to overcome barriers to access may be conceived of as ‘regulatory’. We adopt Black’s definition of regulation as sustained, focused, and intentional action directed at altering others’ behaviour. We found that participants performed various actions to overcome barriers to access, and primarily, these actions were motivated by a desire to support voluntary assisted dying access for individual patients. However, many participants were motivated to make the voluntary assisted dying system better for others. Participants perceived that actions to overcome barriers to access by patients and family caregivers improved their individual experience of the voluntary assisted dying process. Sometimes, their actions also altered the behaviour of key participants in Victoria’s voluntary assisted dying system or impacted the system as a whole. Patients and family caregivers are central to Victoria’s voluntary assisted dying system, so it is positive they can overcome barriers to involvement in regulation, such as information asymmetry and power imbalances. However, having to undertake ‘regulation’ to alter others’ behaviour and the system to address access issues is not an easy role. Patients and family caregivers should have opportunities to be involved in regulation if they wish, but for others who do not wish to be involved, consideration must be given to addressing barriers to accessing voluntary assisted dying to reduce the burden on patients and family caregivers of having to take action to overcome these access barriers.
Belgium has over 20 years of experience regulating assisted dying (AD). While much research considers this end-of-life practice, no studies have comprehensively analysed the various sources of regulation that govern it, including law,... more
Belgium has over 20 years of experience regulating assisted dying (AD). While much research considers this end-of-life practice, no studies have comprehensively analysed the various sources of regulation that govern it, including law, professional standards, and ethics. A scoping review identified all sources of regulation that guide AD practice, and their regulatory functions. Databases and reference lists were searched for records which met inclusion criteria between 11/2/22 and 25/3/22. Existing scholarship was used to identify sources of regulation, and thematically analyse their functions. Of the initial sample of 1364 records, 107 were included. Six sources of regulation were identified: law, policies, professional standards, training, advisory documents, and system design. Three regulatory functions were identified: prescribing conduct, scaffolding to support practice, and monitoring the system. The Belgian AD regulatory framework is multifaceted, complex, and fragmented. Providers must navigate and reconcile numerous sources of guidance providing this form of end-of-life care.
Opinion statementIn 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... more
Opinion statementIn 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 so...
Background In November 2021, assisted dying (AD) became lawful in Aotearoa New Zealand. A terminally ill person may now request, and receive, pharmacological assistance (self-administered or provided by a medical practitioner/nurse... more
Background In November 2021, assisted dying (AD) became lawful in Aotearoa New Zealand. A terminally ill person may now request, and receive, pharmacological assistance (self-administered or provided by a medical practitioner/nurse practitioner) to end their life, subject to specific legal criteria and processes. Exploring the experiences of health providers in the initial stage of the implementation of the End of Life Choice Act 2019 is vital to inform the ongoing development of safe and effective AD practice, policy and law. Aim To explore the early experiences of health care providers (HCPs) who do and do not provide AD services seven months after legalisation of AD to provide the first empirical account of how the AD service is operating in New Zealand’s distinctive healthcare environment and cultural context. Design Qualitative exploratory design using semi-structured individual and focus group interviewing with a range of HCPs. Results Twenty-six HCPs participated in the study...
Toko Rage Toys merupakan UMKM yang bergerak dibidang penjualan mainan anak-anak, souvenir, dan aksesoris. Pada kondisi bisnis saat ini media pemasarannya hanya menggunakan banner, media sosial dan whatsapp yang ada pada toko saja,... more
Toko Rage Toys merupakan UMKM yang bergerak dibidang penjualan mainan anak-anak, souvenir, dan aksesoris. Pada kondisi bisnis saat ini media pemasarannya hanya menggunakan banner, media sosial dan whatsapp yang ada pada toko saja, sehingga produk-produk yang dijual tidak menjangkau calon konsumen secara luas. Begitu juga dengan proses transaksi yang dilakukan oleh toko masih terbilang manual. Untuk melakukan pemesanan dan mengetahui detail informasi produk yang dijual, pelanggan harus datang langsung mengunjungi toko. Pengolahan data penjualan toko saat ini masih belum terkomputerisasi yang mengakibatkan terbatasnya peluang pemasaran dan proses transaksi. Belum terdapatnya media pemasaran secara online menyebabkan informasi tentang keberadaan toko Rage Toys tidak diketahui banyak orang. Oleh sebab itu, toko Rage Toys membutuhkan sarana promosi atau pemasaran secara online seperti E-Commerce, tujuannya untuk mendukung layanan penjualan agar dapat melakukan proses transaksi secara onl...
Background In November 2021, assisted dying (AD) became lawful in Aotearoa New Zealand. A terminally ill person may now request, and receive, pharmacological assistance (self-administered or provided by a medical practitioner/nurse... more
Background In November 2021, assisted dying (AD) became lawful in Aotearoa New Zealand. A terminally ill person may now request, and receive, pharmacological assistance (self-administered or provided by a medical practitioner/nurse practitioner) to end their life, subject to specific legal criteria and processes. Exploring the experiences of health providers in the initial stage of the implementation of the End of Life Choice Act 2019 is vital to inform the ongoing development of safe and effective AD practice, policy and law. Aim To explore the early experiences of health care providers (HCPs) who do and do not provide AD services seven months after legalisation of AD to provide the first empirical account of how the AD service is operating in New Zealand’s distinctive healthcare environment and cultural context. Design Qualitative exploratory design using semi-structured individual and focus group interviewing with a range of HCPs. Results Twenty-six HCPs participated in the study...
When state parliaments legalised voluntary assisted dying (VAD), they could not have anticipated that the requirement to be 'an Australian citizen or permanent resident' would be one of the main areas of controversy. This criterion of... more
When state parliaments legalised voluntary assisted dying (VAD), they could not have anticipated that the requirement to be 'an Australian citizen or permanent resident' would be one of the main areas of controversy. This criterion of eligibility was intended to prevent people travelling from other countries to access VAD. However, because the term 'permanent resident' is not defined in the legislation, it has unfortunately prevented some long-term Australian residents from accessing VAD. We evaluate various definitions of 'permanent resident' and conclude that a plain English definition better suits the text, context and purpose of the VAD laws than the technical definitions found in migration or citizenship legislation. We then suggest policy and statutory reform to ameliorate some of the problems which have occurred in practice.
Introduction: Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the... more
Introduction: Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a connection to the VAD system is challenging. This study analyses the causes of this 'point of access' barrier. Methods: We conducted semi-structured qualitative interviews with family caregivers and a person seeking VAD, with participants recruited via social media and patient interest groups. Data were thematically analysed. We also undertook documentary analysis (content and thematic) of publicly available reports from the oversight body, the Voluntary Assisted Dying Review Board. Results: We interviewed 32 family caregivers and one patient across 28 interviews and analysed six Board reports. Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified: (1) not knowing VAD exists as a legal option; (2) not recognising a person is potentially eligible for VAD; (3) not knowing next steps or not being able to achieve them in practice; and (4) challenges with patients being required to raise the topic of VAD because doctors are legally prohibited from doing so. Conclusion: Legal, policy and practice changes are needed to facilitate patients being able to find a connection to the VAD system. The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system. Community awareness initiatives are needed to enhance awareness of VAD, especially given it is relatively new in Victoria. Patient or Public Contribution: Families and a patient were the focus of this research and interviews with them about the experience of seeking VAD were the primary source of data analysed. This article includes their solutions to address the identified point of access barriers. Patient interest groups also supported the recruitment of participants.
Background: In November 2021, assisted dying (AD) became lawful in Aotearoa New Zealand. A terminally ill person may now request, and receive, pharmacological assistance (self-administered or provided by a medical practitioner/ nurse... more
Background: In November 2021, assisted dying (AD) became lawful in Aotearoa New Zealand. A terminally ill person may now request, and receive, pharmacological assistance (self-administered or provided by a medical practitioner/ nurse practitioner) to end their life, subject to specific legal criteria and processes. Exploring the experiences of health providers in the initial stage of the implementation of the End of Life Choice Act 2019 is vital to inform the ongoing development of safe and effective AD practice, policy and law. Aim: To explore the early experiences of health care providers (HCPs) who do and do not provide AD services seven months after legalisation of AD to provide the first empirical account of how the AD service is operating in New Zealand's distinctive healthcare environment and cultural context. Design: Qualitative exploratory design using semi-structured individual and focus group interviewing with a range of HCPs. Results: Twenty-six HCPs participated in the study. Through a process of thematic analysis four key themes were identified: (1) Difference in organisational response to AD; (2) challenges in applying the law; (3) experiences at the coal face; and (4) functionality of the AD system. Conclusion: A range of barriers and enablers to successful implementation of AD were described. Adoption of open and transparent organisational policies, ongoing education of the workforce, and measures to reduce stigma associated with AD are necessary to facilitate high quality AD service provision. Future research into the factors that influence responses to, and experience of AD; the impact of institutional objection; and the extent to which HCP perspectives evolve over time would be beneficial. In addition, further research into the integration of AD within Māori health organisations is required.
In the debate on euthanasia or assisted dying, many different arguments have been advanced either for or against legal reform in the academic literature, and much contemporary academic research seeks to engage with these arguments.... more
In the debate on euthanasia or assisted dying, many different arguments have been advanced either for or against legal reform in the academic literature, and much contemporary academic research seeks to engage with these arguments. However, very little research has been undertaken to track the arguments that are being advanced by politicians when Bills proposing reform are debated in Parliament. Politicians will ultimately decide whether legislative reform will proceed and, if so, in what form. It is therefore essential to know what arguments the politicians are advancing in support of or against legal reform so that these arguments can be assessed and scrutinised. This article seeks to fill this gap by collecting, synthesising and mapping the pro- and anti-euthanasia and assisted dying arguments advanced by Australian politicians, starting from the time the first ever euthanasia Bill was introduced.
Purpose: Drawing on the work of Niklas Luhmann, the paper argues that technology can be viewed as a self-referential system which is autonomous from both human beings and other function systems of society. The paper aims to develop a... more
Purpose: Drawing on the work of Niklas Luhmann, the paper argues that technology can be viewed as a self-referential system which is autonomous from both human beings and other function systems of society. The paper aims to develop a philosophy of technology from the work of Niklas Luhmann. To achieve this aim, it draws upon the systems-theory work of Jacques Ellul, a philosopher of technology who focuses on the autonomous potential of technological evolution. Design/methodology/approach: The paper draws on the work of Niklas Luhmann and Jacques Ellul to explore the theme of autonomous technology and what this means for our thinking about technological issues in the 21st century. Insights from these two thinkers and researchers working in the Luhmannian sociological tradition are applied to remote work. Findings: The sociological approach of Luhmann, coupled with Ellul's insights into the autonomous nature of technology, can help us develop a systems theory of technology which takes seriously its irreducibility to human functions. Research limitations/implications: The paper contributes to the growing sociological literature that thematizes the Luhmannian approach to technology, helping us better understand this pehnomenon and think in new ways about what technological autonomy means. Originality/value: The paper brings together the work of Luhmann, Ellul and contemporary researchers to advance a new understanding of technology and technological communication.
Can ethical choices outlive the people who make them? In order to explore this question, this article draws on ethnographic research on transnational assisted suicide to question afterlife implications of practices of un/naming,... more
Can ethical choices outlive the people who make them? In order to explore this question, this article draws on ethnographic research on transnational assisted suicide to question afterlife implications of practices of un/naming, particularly the use of anonymisation and pseudonyms. Assisted suicide is organised around a specific politics of naming that animates its fight for social and political recognition but which contradicts anthropology’s once long-standing disposition towards anonymity as a form of protecting research participants. This dissonance creates a situation where one of anthropology’s main tools of protection risks jeopardising the political struggles and fight for recognition of the same people it seeks to protect. Against this background, this reflection argues that empirically researching death and dying requires an additional sensitivity to un/naming practices. Thus, I propose the notion of afterlife reverberations, that is, the affects and expectations that ripple in the aftermath of a research participant’s death from their research choices made in life.
Objectives: In the new era of voluntary assisted dying (VAD) legislation in Australia, this study aimed to explore (1) underlying reasons for desire to die statements (DTDSs), (2) clinician responses to DTDSs and (3) whether DTDSs were a... more
Objectives: In the new era of voluntary assisted dying (VAD) legislation in Australia, this study aimed to explore (1) underlying reasons for desire to die statements (DTDSs), (2) clinician responses to DTDSs and (3) whether DTDSs were a true request for VAD. Methods: Clinical audit using an existing prospectively collected quality assurance database, supplemented by electronic medical records. Patients known to a consultation-liaison palliative care service who expressed a DTDS between October 2019 and September 2020 were included. Results: Forty-one patients were included; 29 (71%) were male, 29 (71%) had a malignancy and 31 (76%) expressed a DTDS more than once. Uncontrolled psychological symptoms were present more often than physical (n = 30 vs 19 [73% vs 46%]), yet physical symptoms were addressed more frequently than psychological (80% vs 63% of the time). Based on available data, the VAD assessment process was commenced by 7 patients, and death by VAD occurred for 2 patients. Conclusions: In our study, DTDSs were complex, multi-layered requests that more commonly reflected psychological rather than physical suffering. Though VAD is now legally possible, a DTDS was not always synonymous with a request for VAD. Key to responding to these requests are high levels of clinician confidence and communication skills. Training in this area remains critical for the experience of both patients and clinicians. Keywords euthanasia, palliative care, voluntary assisted dying, desire to die statement, existential, death talk What is known about the topic? Desire to die statements (DTDSs) are often an expression of distress rather than a formal request for a hastened death. Exploring the context and meaning of a DTDS is vital for patient care and wellbeing. What does this paper add? In the era of legalised voluntary assisted dying in Australia, our study highlights that DTDSs are in most cases not synonymous with a desire for a hastened death. What are the implications for practitioners? With the added option to refer patients for voluntary assisted assessment, our study highlights the importance of clinician training in exploring and responding to DTDSs.
Dying of severe and enduring eating disorders (SEEDs) was studied using semi-structured interviews (n ¼ 7) and a follow-up videoconferencing focus group (n ¼ 3) with Dutch mental healthcare providers. We identified three main themes: the... more
Dying of severe and enduring eating disorders (SEEDs) was studied using semi-structured interviews (n ¼ 7) and a follow-up videoconferencing focus group (n ¼ 3) with Dutch mental healthcare providers. We identified three main themes: the uncertainties of dying from SEEDs, dilemmas in defining treatment resistance and palliative care, and suicidal ideation and intent. There were two contrasting perspectives on good care, both centering on the patient. While mental healthcare providers strive toward healthy living, palliative care strives toward quality of life and dying. Clarifying underlying concepts enables flexibility in applying these perspectives to optimize individual patient care.
As many studies around the theme of ‘too much medicine’ attest, investigations are being ordered with increasing frequency; similarly the threshold for providing treatment has lowered. Our contention is that trust (or lack of it) is a... more
As many studies around the theme of ‘too much medicine’ attest, investigations are being ordered with increasing frequency; similarly the threshold for providing treatment has lowered. Our contention is that trust (or lack of it) is a significant factor in influencing this, and that understanding the relationship between trust and investigations and treatments will help clinicians and policymakers ensure ethical decisions are more consistently made. Drawing on the philosophical literature, we investigate the nature of trust in the patient–doctor relationship, arguing that at its core it involves a transfer of discretion. We show that there is substantial empirical support for the idea that more trust will reduce the problem of too much medicine. We then investigate ways in which trust can be built, concentrating on issues of questioning, of acknowledging uncertainty and of shouldering responsibility for it. We argue that offering investigations or treatments as a way of generating t...
Breast cancer is the most common neoplasm among women. Worldwide, there will be about 2.1 million newly diagnosed female breast cancer cases in 2018, accounting for almost 1 in 4 cancer cases among women...
Victoria was the first Australian state to permit voluntary assisted dying (VAD). The law sets out a detailed and rigorous process that people must go through to seek VAD. This ensures only people who meet the eligibility criteria can... more
Victoria was the first Australian state to permit voluntary assisted dying (VAD). The law sets out a detailed and rigorous process that people must go through to seek VAD. This ensures only people who meet the eligibility criteria can access VAD, but it can also make the system complex. In this Australian-first study, we explored patient experiences of seeking VAD.
This article considers the implications that recent euthanasia developments in Belgium might have for the Australian debate on assisted dying. Through media database and internet searches, four significant developments in Belgium were... more
This article considers the implications that recent euthanasia developments in Belgium might have for the Australian debate on assisted dying. Through media database and internet searches, four significant developments in Belgium were identified: three cases involving individuals who requested access to euthanasia, and recent changes to the Belgian Act on Euthanasia 2002, allowing children access to euthanasia. The article outlines these developments and then examines how they have been discussed in Australia by the different sides of the euthanasia debate. It concludes that these developments are important considerations that legislators and policy-makers in Australia should engage with, but argues that that engagement must be rational and also informed by the significant evidence base that is now available on how the Belgian (and other) assisted dying regimes operate in practice.
In the debate on euthanasia or assisted dying, many different arguments have been advanced either for or against legal reform in the academic literature, and much contemporary academic research seeks to engage with these arguments.... more
In the debate on euthanasia or assisted dying, many different arguments have been advanced either for or against legal reform in the academic literature, and much contemporary academic research seeks to engage with these arguments. However, very little research has been undertaken to track the arguments that are being advanced by politicians when Bills proposing reform are debated in Parliament. Politicians will ultimately decide whether legislative reform will proceed and, if so, in what form. It is therefore essential to know what arguments the politicians are advancing in support of or against legal reform so that these arguments can be assessed and scrutinised. This article seeks to fill this gap by collecting, synthesising and mapping the pro- and anti-euthanasia and assisted dying arguments advanced by Australian politicians, starting from the time the first ever euthanasia Bill was introduced.