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Medicine, the law and end of life: From Tony Bland to voluntary assisted dying.

In this podcast, Penny Neller from End of Life Law for Clinicians and ACHLR interviews Dr Jim Howe, a neurologist with over 50 years experience in clinical practice. They explore Jim’s experience of the interaction between law and medicine arising from his time caring for Tony Bland, a victim of the 1989 Hillsborough football disaster, and his involvement in the landmark UK case Airedale NHS Trust v Bland. Dr Howe also discusses his involvement with voluntary assisted dying in Victoria:

Learn Me Right in Health Law and Bioethics

This podcast series represents the opinions and personal views of the participants and they do not represent the views of the Australian Centre for Health Law Research (ACHLR) or QUT or any organisations and/or bodies with which the participants are affiliated. The podcast series is intended for general information and educational purposes only and does not constitute legal, medical or other advice under any circumstances. Listeners should seek legal or other professional advice in relation to any particular matters you or your organisation may have.

Episode 18 – Learn Me Right in Ethical Procreating in a Time of Climate Change

In the first episode of 2024, Sinead talks with PhD candidate Craig Stanbury from the Monash Bioethics Centre on his research about the ethics of procreating in a time of climate change. Craig talks about the role of justice in moral tragedies, the rights, responsibilities, and duties of people in their reproductive choices, and how all of us can have important conversations about our roles in mitigating climate change:

Episode 17 – Learn Me Right with Justice Michael Kirby

Ruthie and Sinead are delighted to release a special podcast with The Hon Michael Kirby AC CMG who discusses his role in the World Health Organisation’s response to the HIV/AIDS pandemic in Australia, as well as unique features of the Australian response that enabled the nation to quickly and effectively curtail a public health emergency that was disproportionately affecting vulnerable people.

Michael also discusses the importance of individuals to make change in health law, specifically the importance of joining movements and organisations and of simply being kind:

Episode 16 – Learn Me Right in Public Health Palliative Care

In the 16th episode of the podcast series, Sinead and Ruthie interview Luc Deliens, Professor of Palliative Care Research at VUB Brussels & Ghent University. Luc makes the point that how we conceptualize palliative care needs to change to better suit the needs of those at the end of life, including through more communitarian-based care structures. We also discuss the relationship between palliative care and euthanasia (as voluntary assisted dying is known in Belgium), drawing on this recently published article:

Episode 15 – Learn Me Right in Gene Carrier Testing

In the 15th episode of the podcast series, Sinead and Ruthie interview Dr Lisa Dive. Lisa discusses the definition of severity in genetic conditions and eugenics. We hope you find her message of inclusivity, rich diversity, and listening to those with lived experience, inspiring and useful:

For resources discussed in the podcast, see:

Dive L, Archibald AD, Freeman L & Newson AJ. 2023. “How should severity be understood in the context of reproductive genetic carrier screening?”, Bioethics 37(4):359-366. DOI: 10.1111/bioe.13136.
Dive L & Newson AJ. 2022. “Reproductive carrier screening: responding to the eugenics critique”, Journal of Medical Ethics, 48:1060-1067. DOI: 10.1136/medethics-2021-107343.

Episode 14 – Learn Me Right in Surrogacy

In the 14th episode of the podcast series, Sinead and Ruthie interview Ezra Kneebone. Ezra is a PhD Candidate at Monash University and a research assistant in the Monash Bioethics Centre. Ezra provides an overview of surrogacy in Australia and explains why so many Australian babies born via surrogate are born overseas. Ezra highlights the lived experience of Australian surrogates in this podcast, debunks some pervasive myths, and explains how reform to surrogacy regulation in Australia could better support surrogates, intended parents, and babies:

Episode 13 – Learn Me Right in Clinical Decision Support Systems

In the 13th episode of the podcast series, Sinead and Ruthie interview Dr Megan Prictor from the University of Melbourne. Megan talks us through the Practice Fusion case in the United States, where a company was fraudulently receiving money from a pharmaceutical company to influence the design of CDSS software. Megan highlights potential complexities in working out legal responsibility if things go wrong because of a decision is made using CDSS: i.e. is the doctor still responsible for a decision made with the support of a machine?:

Episode 12 – Learn Me Right in Black Bioethics

In the 12th episode of the podcast series, Sinead and Ruthie interview Professor Keisha Ray. Keisha is a professor of bioethics and medical humanities at the University of Texas Health Science Center. Keisha shares insights from her research into black health, including how racism inside and outside of clinics creates poorer health outcomes for black people:

Black Health, written by Professor Keisha Ray, is available now.

Episode 11 – Learn Me Right in Quarantine

In the 11th episode of the podcast series, Sinead and Ruthie interview Professor Scott Kitchener. Scott shares his medical and public health expertise regarding quarantine, and the use of quarantine in Queensland during the COVID-19 pandemic:

Episode Ten – Learn Me Right in Gene Therapy

In the 10th episode of the podcast series, Sinead and Ruthie interview Dr. Christopher Rudge from the University of Sydney. Chris shares his legal and bioethical expertise regarding stem cells, therapeutic genetic engineering, and the significant importance of community input of regulation in medical innovation:

Episode Nine – Learn Me Right in Child Sexual Abuse

Note: this podcast contains content about child sexual abuse. Listener discretion is advised. You can contact Lifeline on 13 11 14.

In the 9th episode of the podcast series, Sinead and Ruthie interview Professor Ben Mathews about his work relating to child sexual abuse. In particular, we discuss some of the issues and gaps in legal responses to survivors’ civil claims and criminal actions against abusers. Ben also touches on the Australian Child Maltreatment Study – the first Australian national prevalence study – the findings of which are not yet published but will be released next year:

Episode Eight – Learn Me Right in Consent for Treatment for Trans Youth
In the 8th episode of the podcast series, Ruthie and Sinead interview Dr. Steph Jowett about her recently published book: Consent for Treatment for Trans Youth. Steph explains how court involvement in the treatment process for trans youth is complicated and in need of reform:

Episode Seven – Learn Me Right in Abortion and Conscientious Objection
In the 7th episode of the podcast series, Sinead and Ruthie interview Casey Haining, a research fellow at QUT and the University of Melbourne, about her research on abortion and conscientious objection in Australia:

Episode Six – Learn Me Right in Health and Disease

In the 6th episode of the podcast series, Ruthie turns to co-host Sinead to get to the crux of her initial findings in her PhD on the ethics of genetic enhancement by defining health and disease:

Episode Five – Learn Me Right in Source Reliability
Sinead and Ruthie chat to Liaison Librarian Denise Frost about source reliability and how to distinguish trustworthy sources:

Episode Four – Learn Me Right in Conservatorship and Britney Spears
Sinead and Ruthie talk with Dr. Julia Duffy about the law surrounding the conservatorship Britney Spears was held in for 13 years.

Duffy completed her PhD in guardianship law here in Australia, and talks us through whether she thinks something similar could happen here in Australia:

Episode Three – Learn Me Right in Voluntary Assisted Dying
Sinead and Ruthie talk with Dr Jodhi Rutherford about her research into Voluntary Assisted Dying (VAD).

Jodhi discusses the complex ethical issues faced by doctors who choose to participate in VAD; and the difficulties faced by individuals trying to access VAD, including finding a doctor who is willing to assist them:

Episode Two – Learn Me Right in the Queensland Mental Health Tribunal
Sinead and Ruthie talk with Dr Sam Boyle about the circumstances in which doctors can treat a person with a mental illness without their consent.

Sam discusses his research into the mental health review tribunal according to the perspectives of lawyers and advocates who represent patients in the tribunal:

Episode One – Learn Me Right in Vaccine Hesitancy
ACHLR HDR student Sam Roach discusses vaccine hesitancy with fellow ACHLR HDR students Ruthie Jeanneret and Sinead Prince in the first episode of the “Learn Me Right in Health Law and Bioethics” series.

They discuss how governments might intervene to improve vaccine uptake, and some helpful tips on how you can approach vaccine hesitancy within your own circle of influence:

Learn Me Right in Health Law and Bioethics – VAD mini-series

This podcast series is sponsored by the Australian Centre for Health Law Research at QUT.

Prologue
Episode one – An overview of VAD in Australia (Professor Lindy Willmott)
Episode two – Patients’ experience of VAD (Professor Ben White)
Episode three – Lessons from Victoria and WA, remuneration, and regional access (Casey Haining)
Episode four – VAD across the states (Katherine Waller)
Episode five – The Commonwealth Criminal Code and telehealth (Dr Katrine Del Villar)
Episode six – Institutional objection (Dr Eliana Close)
Episode seven – Lessons from Belgium (Madeleine Archer)
Episode eight – Doctors’ perspectives on involvement in VAD (Dr Laura Ley Greaves)
Episode nine – How patients and families influence change (Ruthie Jeanneret)
Episode ten – Training for clinicians (Penny Neller and Rachel Feeney)
Epilogue

Prologue

Episode 1 – Learn Me Right in VAD: An overview of VAD in Australia (Professor Lindy Willmott)

Professor Lindy Willmott gives an overview of how VAD laws came to be in Australia, including how early empirical work from interviews with Victorian doctors helped inform law reform processes in other Australian states:

Willmott, Lindy, White, Ben P, Sellars, Marcus, & Yates, Patsy M (2021) Participating doctors’ perspectives on the regulation of voluntary assisted dying in Victoria: a qualitative study. Medical Journal of Australia, 215(3), pp. 125-129.
White, Ben & Willmott, Lindy (2019) A Model Voluntary Assisted Dying Bill. Griffith Journal of Law & Human Dignity, 7(2), pp. 1-47.
Willmott, Lindy, White, Ben, Stackpoole, Christopher, Purser, Kelly, & McGee, Andrew (2016) (Failed) Voluntary Euthanasia Law Reform in Australia: Two Decades of Trends, Models and Politics. University of New South Wales Law Journal, 39(1), pp. 1-46.

Episode 2 – Learn Me Right in VAD: Patients’ experience of VAD (Professor Ben White)

Professor Ben White gives an update on barriers and facilitators of access to VAD from recent interviews with Victorian families and a patient who had been through the VAD process:

Additional material

White, Ben, Jeanneret, Ruthie, Close, Eliana, & Willmott, Lindy (2023) Access to voluntary assisted dying in Victoria: a qualitative study of family caregivers’ perceptions of barriers and facilitators. Medical Journal of Australia, 219(5), pp. 211-217.
White, Ben, Jeanneret, Ruthie, Close, Eliana, & Willmott, Lindy (2023) Voluntary assisted dying can be hard to access but system supports can help (Research briefing).
White, Ben P, Jeanneret, Ruthie, Close, Eliana, & Willmott, Lindy (2023) The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions. BMC Medical Ethics, 24, Article no. 22.
White, Ben, Jeanneret, Ruthie, Close, Eliana, & Willmott, Lindy (2023) Harms to patients caused by institutions objecting to voluntary assisted dying (Research briefing).
White, Ben, Jeanneret, Ruthie, & Willmott, Lindy (2023) Barriers to connecting with the voluntary assisted dying system in Victoria, Australia: A qualitative mixed method study. Health Expectations (Early Online).
White, Ben, Jeanneret, Ruthie, & Willmott, Lindy (2023) Voluntary assisted dying is legal – but some people are unsure how to access it (Research Briefing).
White, Ben, Jeanneret, Ruthie, & Willmott, Lindy (2023) Finding support to seek voluntary assisted dying: Information for consumers and caregivers.

Episode 3 – Learn Me Right in VAD: Lessons from Victoria and WA, remuneration, and regional access (Casey Haining)

Research Fellow Casey Haining discusses how the Victorian approach was evaluated and adapted for the WA legislation, and the pertinent issues of remuneration for practitioners and regional access:

Haining, Casey M, Willmott, Lindy, & White, Ben P (2023) Accessing voluntary assisted dying in regional Western Australia: early reflections from key stakeholders, Rural and Remote Health, 23(4), Article no. 8024.
Haining, Casey M, Willmott, Lindy, Towler, Simon, & White, Ben P (2022) Access to voluntary assisted dying in Australia requires fair remuneration for medical practitioners, Medical Journal of Australia, 218(1), pp. 8-10.
Willmott, Lindy, Haining, Casey M, & White, Ben P (2022) Facilitating regional and remote access to voluntary assisted dying in Western Australia: targeted initiatives during the law-making and implementation stages of reform, Rural and Remote Health, 23(1), Article no. 7522.

Episode 4 – Learn Me Right in VAD: VAD across the states (Katherine Waller)

Project Manager Katherine Waller provides a comparison of the Australian VAD laws across the states and highlights the universal requirement for participating practitioners to undertake mandatory training in the law:

Waller, Katherine, Del Villar, Katrine, Willmott, Lindy, & White, Ben (2023) Voluntary assisted dying in Australia: A comparative and critical analysis of state laws. University of New South Wales Law Journal, 46(4), pp. 1-45. (In Press).

Episode 5 – Learn Me Right in VAD: The Commonwealth Criminal Code and telehealth (Dr Katrine Del Villar)

Dr. Katrine Del Villar explores how the Commonwealth Criminal Code Act 1995 prohibition on using a carriage service (i.e., telehealth) to discuss “suicide” and state Voluntary Assisted Dying laws interact to create a unique and difficult problem for Australians accessing VAD:

Del Villar, Katrine, Willmott, Lindy, & White, Ben (2023) The Exclusion of Long-term Australian Residents from Access to Voluntary Assisted Dying: A Critique of the ‘Permanent Resident’ Eligibility Criterion. Monash University Law Review, 49(2). (In Press)
Del Villar, Katrine & Simpson, Amelia (2022) Voluntary Assisted Dying for (Some) Residents Only: Have States Infringed s 117 of the Constitution? Melbourne University Law Review, 45(3).

Additional material (on the Commonwealth Criminal Code):

Del Villar, Katrine, Close, Eliana, Hews, Rachel, Willmott, Lindy, & White, Ben (2022) Voluntary assisted dying and the legality of using a telephone or internet service: The impact of Commonwealth ‘Carriage Service’ offences. Monash University Law Review, 47(1), pp. 125-173.
Del Villar, Katrine, White, Ben P., Close, Eliana, & Willmott, Lindy (2022) Voluntary Assisted Dying by Practitioner Administration Is Not Suicide: A Way Past the Commonwealth Criminal Code? Journal of Law and Medicine, 29(1), pp. 129-141.

Episode 6 – Learn Me Right in VAD: Institutional objection (Dr Eliana Close)

Dr. Eliana Close discusses institutional objections to VAD in Canadian and Australian VAD systems, and how this impacts patients seeking access to VAD, and providing practitioners:

Close, Eliana, Jeanneret, Ruthie, Downie, Jocelyn, Willmott, Lindy, & White, Ben P (2023) A qualitative study of experiences of institutional objection to medical assistance in dying in Canada: ongoing challenges and catalysts for change. BMC Medical Ethics, 24, Article no. 71.
Close, Eliana, Jeanneret, Ruthie, Downie, Jocelyn, Willmott, Lindy, & White, Ben P (2023) Harms caused by institutional objections to medical assistance in dying: Ongoing challenges and catalysts for change: Research briefing.
White, Ben P, Jeanneret, Ruthie, Close, Eliana, & Willmott, Lindy (2023) The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions. BMC Medical Ethics, 24, Article no. 22.
White, Ben, Jeanneret, Ruthie, Close, Eliana, & Willmott, Lindy (2023) Harms to patients caused by institutions objecting to voluntary assisted dying: Research briefing.
White, Ben, Willmott, Lindy, Close, Eliana, & Downie, Jocelyn (2021) Legislative Options to Address Institutional Objections to Voluntary Assisted Dying in Australia. University of New South Wales Law Journal Forum, 2021(3), pp. 1-19.
Close, Eliana, Willmott, Lindy, Keogh, Louise Anne, & White, Ben (2023) Institutional Objection to Voluntary Assisted Dying in Victoria, Australia: An Analysis of Publicly Available Policies. Journal of Bioethical Inquiry.

Episode 7 – Learn Me Right in VAD: Lessons from Belgium (Madeleine Archer)

Doctoral Candidate Madeleine Archer provides an overview of the assisted dying model in Belgium, considers some similarities and differences with the Australian approach, and highlights some insights and lessons for Australia:

Archer, Madeleine, Willmott, Lindy, Chambaere, Kenneth, Deliens, Luc, & White, Ben (2023) Mapping Sources of Assisted Dying Regulation in Belgium: A Scoping Review of the Literature OMEGA – Journal of Death and Dying 0(0), pp. 1-24.

Episode 8 – Learn Me Right in VAD: Doctors’ perspectives on involvement in VAD (Dr Laura Ley Greaves)

Dr. Laura Ley Greaves, a medical practitioner, discusses the importance of considering doctors’ perspectives of providing VAD in Australia, including the emotional impacts of being involved as a VAD provider:

Episode 9 – Learn Me Right in VAD: How patients and families influence change (Ruthie Jeanneret)

Doctoral Candidate Ruthie Jeanneret, our very own podcast host, discusses the role of patients and families in influencing VAD regulation, drawing on insights from interviews with patients and families in Victoria and Canada:

Episode 10 – Learn Me Right in VAD: Training for clinicians (Penny Neller and Dr Rachel Feeney)

Project Manager Penny Neller and Dr. Rachel Feeney explain the importance and success of End-of-Life Law training for clinicians:

End of Life Law in Australia website

Additional material – for practitioners

End of Life Law for Clinicians website.
End of Life Law for Clinicians Training Curriculum brochure
End of Life Law for Clinicians Indigenous Module brochure
End of Life Law for Clinicians Diverse Populations Module brochure
ELDAC End of Life Law Toolkit website
ELDAC End of Life Law Toolkit brochure

Epilogue

The importance of clear triage protocols (24 May, 2021)

Dr Eliana Close talks about the ethical and legal need for clear triage protocols to support clinicians when making difficult resource allocation decisions during pandemics and disasters. With Cate Swannell, news and online editor with The Medical Journal of Australia. Listen now.

Dr Eliana Close

eliana.close