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"Willmott, Lindy"
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Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study
by
Jeanneret, Ruthie
,
White, Ben P.
,
Willmott, Lindy
in
Access
,
access to health care
,
assisted dying
2023
IntroductionVoluntary 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.MethodsWe 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.ResultsWe 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.ConclusionLegal, 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 The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system.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 ContributionFamilies 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.
Journal Article
The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions
by
White, Ben P.
,
Jeanneret, Ruthie
,
Close, Eliana
in
Assisted dying
,
Assisted suicide
,
Attitude of Health Personnel
2023
Background
Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the
Voluntary Assisted Dying Act 2017
(Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying.
Methods
28 semi-structured interviews were conducted with 32 family caregivers and one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically.
Results
Participants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient’s illness; progression or state of a patient’s illness; patient’s geographical location; and the capability and assertiveness of a patient and/or caregiver.
Conclusions
Institutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria’s existing policy approach appears to preference institutional positions over patient’s choice given existing power dynamics.
Journal Article
Prospective oversight and approval of assisted dying cases in Victoria, Australia: a qualitative study of doctors’ perspectives
by
White, Ben P
,
Yates, Patsy
,
Sellars, Marcus
in
Assisted suicide
,
Clinical decision making
,
end of life care
2024
BackgroundAssisted dying (AD) is increasingly becoming lawful internationally. While all AD models have oversight mechanisms, Victoria, Australia is rare in requiring formal approval before AD is permitted. Other jurisdictions are now enacting or implementing prospective approval models yet little is known about their operation. This paper reports the first empirical research internationally analysing the operation of a prospective approval model.MethodsThis qualitative study recruited doctors involved in providing lawful AD during the first year of the Victorian AD system. Recruitment occurred through the mandatory training doctors providing AD must undertake. Semistructured interviews were undertaken predominantly through Zoom conferencing, transcribed and thematically analysed.Results32 doctors from diverse specialties (including general practice) and diverse AD experiences were interviewed. Six themes were identified: (1) The primary gatekeeping to AD in practice was by the administrative Secretariat of the oversight body, the Voluntary Assisted Dying Review Board, and not the government department who issues the final ‘permit’; this may not have been intended by parliament. (2) The prospective oversight and approval process was bureaucratic and (3) the mandatory online system to manage AD was a barrier. (4) These factors caused unnecessary delays which (5) impeded AD for very sick patients. (6) However, this prospective process protected doctors and ensured system safety.ConclusionsPotential barriers to accessing AD posed by prospective approval should be evaluated carefully by jurisdictions implementing or considering such a model. Attention is needed not only to law but to system design and how AD is implemented in practice.
Journal Article
Patients' and Caregivers' Suggestions for Improving Assisted Dying Regulation: A Qualitative Study in Australia and Canada
2024
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.
Journal Article
A qualitative study of experiences of institutional objection to medical assistance in dying in Canada: ongoing challenges and catalysts for change
by
Downie, Jocelyn
,
White, Ben P
,
Jeanneret, Ruthie
in
Analysis
,
Assisted dying
,
Assisted suicide
2023
Background
In June 2016, Canada legalized medical assistance in dying (MAiD). From the outset, some healthcare institutions (including faith-based and non-faith-based hospitals, hospices, and residential aged care facilities) have refused to allow aspects of MAiD onsite, resulting in patient transfers for MAiD assessments and provision. There have been media reports highlighting the negative consequences of these “institutional objections”, however, very little research has examined their nature and impact.
Methods
This study reports on findings from 48 semi-structured qualitative interviews conducted with MAiD assessors and providers, MAiD team members (working to coordinate care and lead MAiD programs in institutions and health authorities), and family caregivers on their experiences with institutional objection. Participants were recruited from the Canadian provinces of British Columbia, Ontario, and Nova Scotia. Data were analyzed using inductive thematic analysis.
Results
Themes identified were: (1) basis for institutional objection (with objections commonly rooted in religious values and a particular philosophy of palliative care); (2) scope of objection (demonstrating a wide range of practices objected to); (3) lack of transparency regarding institutional position; (4) impacts on patients; (5) impacts on health practitioners; and (6) catalysts for change. Participants reported that many institutions’ objections had softened over time, lessening barriers to MAiD access and adverse impacts on patients and health practitioners. Participants attributed this positive change to a range of catalysts including advocacy by health practitioners and family members, policymaking by local health authorities, education, and relationship building. Nevertheless, some institutions, particularly faith-based ones, retained strong objections to MAiD, resulting in forced transfers and negative emotional and psychological impacts on patients, family members, and health practitioners.
Conclusions
This paper adds to the limited evidence base about the impacts of institutional objection and can inform practical and regulatory solutions in Canada and abroad. Reform is needed to minimize the negative impacts on patients, their caregivers, and health practitioners involved in MAiD practice.
Journal Article
Key challenges in providing assisted dying in Belgium: a qualitative analysis of health professionals’ experiences
2025
Background:
Assisted dying or ‘euthanasia’ has been legal in Belgium since 2002. Extensive research has been conducted which investigates Belgian euthanasia practice, however, the current challenges that health professionals face when providing euthanasia are not well known. This knowledge is important for evaluating the current system, especially in light of recent developments in Belgian euthanasia law and practice including judicial decisions, legislative amendments and research highlighting the complexity of its governing regulatory framework.
Objectives:
This study investigates the key challenges that health professionals experience when providing euthanasia in Belgium.
Design:
A qualitative interview study with reflexive thematic analysis.
Methods:
Twenty interviews were conducted between September 2022 and March 2024 using Microsoft Teams videoconferencing. Eligible participants were physicians and nurses who spoke English or Dutch and who had been involved in the euthanasia assessment of at least two patients in the past year.
Results:
Four themes were generated: (1) the framing of the euthanasia legislation poses challenges; (2) providing euthanasia can place considerable burdens on health professionals; (3) clashing views about euthanasia can hamper opportunities for balanced discussions and (4) euthanasia and processes relating to euthanasia are not always well-understood.
Conclusion:
This study highlights the numerous and varied challenges physicians and nurses experience when providing euthanasia in Belgium, even 20 years after its law passing. This study contributes to a wider understanding of universal challenges associated with providing assisted dying and sheds light on issues specific to Belgium. The results provide an opportunity for policymakers to take action to better support providers to manage these challenges, including through a formal review of the legislation and the broader system.
Plain language summary
What aspects of providing euthanasia in Belgium do health professionals find challenging?
This study investigates the challenges that doctors and nurses experience when they are involved in providing euthanasia in Belgium. Euthanasia is when a person makes a voluntary request to a health practitioner for help to die. Belgium has permitted euthanasia since 2002. Under the law, doctors assess whether patients are eligible to access euthanasia. Nurses assist doctors and have other important roles in caring for patients who access euthanasia. Much research explores Belgian euthanasia practice. However, research has not considered the many challenges doctors and nurses experience when assisting patients to access euthanasia. These findings are an important source of knowledge when euthanasia law and practice is reviewed. Measures can be implemented to address these challenges, improving patients’ and providers’ experiences of the euthanasia system. We conducted interviews with 20 doctors and nurses. They described four main challenges: the framing of the euthanasia legislation poses challenges; providing euthanasia can place considerable burdens on health professionals; clashing views about euthanasia can hamper opportunities for balanced discussions; and euthanasia and processes relating to euthanasia are not always well understood. Doctors and nurses should be supported to manage these challenges. Measures should also be implemented to manage these challenges, including evaluating and, if needed, making changes to the law; implementing mandatory training for doctors and nurses involved in providing euthanasia; and providing community education on euthanasia and the legal process. These findings are also important for other places which are considering legalising euthanasia in the future.
Journal Article
Health care providers’ early experiences of assisted dying in Aotearoa New Zealand: an evolving clinical service
by
Beaumont, Sophie
,
Diesfeld, Kate
,
Snelling, Jeanne
in
Assisted dying
,
Assisted suicide
,
Clinical medicine
2023
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.
Journal Article
Physicians’ preferences for their own end of life: a comparison across North America, Europe, and Australia
2026
ObjectiveTo study physicians’ personal preferences for end-of-life practices, including life-sustaining and life-shortening practices, and the factors that influence preferences.DesignA cross-sectional survey (May 2022–February 2023).SettingEight jurisdictions: Belgium, Italy, Canada, USA (Oregon, Wisconsin, and Georgia), Australia (Victoria and Queensland).ParticipantsThree physician types: general practitioners, palliative care physicians, and other medical specialists.Main outcome measuresPercentage of physicians who preferred various end-of-life practices and provided information about influence on preferences and demographics.Results1157 survey responses were analysed. Physicians rarely considered life-sustaining practices a (very) good option (in cancer and Alzheimer’s respectively: cardiopulmonary resuscitation, 0.5% and 0.2%; mechanical ventilation, 0.8% and 0.3%; tube feeding, 3.5% and 3.8%). About half of physicians considered euthanasia a (very) good option (respectively, 54.2% and 51.5%). The proportion of physicians considering euthanasia a (very) good option ranged from 37.9% in Italy to 80.8% in Belgium (cancer scenario), and 37.4% in Georgia, USA to 67.4% in Belgium (Alzheimer’s scenario). Physicians practising in a jurisdiction with a legal option for both euthanasia and physician-assisted suicide were more likely to consider euthanasia a (very) good option for both cancer (OR 3.1, 95% CI 2.2 to 4.4) and Alzheimer’s (OR 1.9, 95% CI 1.4 to 2.6).ConclusionPhysicians largely prefer to intensify alleviation of symptoms at the end of life and avoid life-sustaining techniques. In a scenario of advanced cancer or Alzheimer’s disease, over half of physicians prefer assisted dying. Considerable preference variation exists across jurisdictions, and preferences for assisted dying seem to be impacted by the legalisation of assisted dying within jurisdictions.
Journal Article
Facilitating regional and remote access to voluntary assisted dying in Western Australia: targeted initiatives during the law-making and implementation stages of reform
Australians living in regional and remote communities face several barriers when accessing high quality health care. Voluntary assisted dying (VAD), a new and sensitive end-of-life option, presents a new challenge for residents living in these communities. Western Australia (WA) is the second Australian state to implement VAD laws and, to date, is the jurisdiction with the greatest need to address access inequities in regional and remote communities due to its vast area. This article identifies and explores initiatives introduced by the WA Government to address regional and remote access inequities in each of the two stages of the reform process: the stage of the reform process leading up to passing the law ('law-making stage'), and the stage of the reform process after the law was passed and prior to it commencing operation ('implementation stage'). The analysis reveals that several initiatives were implemented during each of the law-making and implementation stages of reform. Initiatives introduced in the law-making stage through inclusion in the legislation itself included dedicated guiding principles promoting equality of access for regional and remote residents, broadened qualification requirements for medical practitioners who can participate in VAD, allowing nurse practitioner administration, and mandating that statistics relating to regional and remote access are recorded and reported. Other initiatives dedicated to facilitating regional and remote access were not specifically provided for by legislation but were introduced during the implementation stage of the reform process. These include the establishment of a Statewide Care Navigator Service that administers a Regional Access Support Scheme and ensuring that the Statewide Pharmacy Service is accessible to regional and remote residents. Other initiatives intended to facilitate regional and remote access were provided for in legislation but given further content during the implementation stage. These include an access standard (contents determined by the CEO during implementation) and telehealth (supporting guidance around lawful use issued by the WA Government during implementation). This policy report reveals that WA took a considered and targeted focus to address regional and remote access in both the law-making and implementation stages of reform. Given VAD in WA is still in the early stages of its operation, it is too soon to determine how effective these initiatives have been in promoting regional and remote access to VAD in WA. Careful evaluation of these initiatives will be crucial to monitor their effectiveness and to assess whether additional measures are needed. Reflecting on the WA experience will also be valuable for other states as they legalise VAD and develop (and adapt) their own access initiatives.
Journal Article
Accessing voluntary assisted dying in regional Western Australia: Early reflections from key stakeholders
2023
Introduction: Most Australian jurisdictions have passed voluntary assisted dying (VAD) laws, with some regimes already in operation. Inequitable access to assisted dying in regional communities has been described internationally. Although regional access to VAD has been identified as a concern in Australia, to date it has been understudied empirically. Western Australia (WA) was the second Australian jurisdiction to pass and implement VAD laws. Due to the vast geography of WA (and the potential for such geography to exacerbate regional access inequities) several initiatives were introduced to try to mitigate such inequities. This article aims to explore the effectiveness of these initiatives, and report on regional provision of VAD in WA more generally, by drawing on the early experiences and reflections of key stakeholders. Methods: A total of 27 semi-structured interviews were conducted with 29 participants belonging to four main stakeholder groups: patients and families, health practitioners, regulators and VAD system personnel, and health and professional organisation representatives. Interviews were transcribed verbatim and analysed using inductive thematic analysis.
Results: Data analysis led to the description of four main themes: the importance of the Regional Access Support Scheme, the need for local providers, the role of telehealth in VAD provision and the impact of distance.
Conclusion: Early experiences and reflections of key stakeholders suggest that while many of the regional initiatives implemented by WA are largely effective in addressing regional access inequities, challenges for regional VAD provision and access remain.
Journal Article