Obtaining consent for research from people with dementia: Do we try hard enough?

A/Prof. Deirdre Fetherstonhaugh1, Professor Elizabeth  Beattie2, Dr  Maria  O’Reilly3, Mr  Mitchell  McMaster4, Professor  Wendy Moyle5, Dr  Elaine Fielding2

1La Trobe University, Bundoora, Australia, 2Queensland University of Technology, Brisbane, Australia, 3Central Queensland University, Bundaberg, Australia, 4Australian National University, Canberra, Australia, 5Griffith University, Brisbane, Australia

The Australian National Statement recognises the right of people with dementia to participate in research. However, the assumption is often made that people with dementia cannot provide their own informed consent to participate in research and therefore historically researchers default to seeking consent from a proxy or substitute decision-maker. In so doing however the person with dementia is denied their right to exercise their autonomous choices, and there is disregard for their agency.

As part of a national study into quality of life of people with dementia living in Australian nursing homes we sought to determine how many of the potential participants with dementia could provide their own informed consent as determined by the ‘Evaluation to Sign Consent (ESC)’ instrument; a tool designed to measure understanding.

The ESC instrument was administered to three hundred and ninety two people with dementia. Informed consent for participation in the research was then obtained from those people who met the criteria of the ESC. Demographic information was collected about their age, gender and level of cognitive impairment.

Just over one fifth (22%) of the people with dementia who were administered the ESC were deemed capable of providing consent to participate in this specific research project. This demonstrates that assuming all people diagnosed with dementia are unable to provide informed consent for research potentially denies them the autonomy to make a decision that they may be capable of making.

This paper will discuss the ethics and practicalities of obtaining consent for research from people with dementia.


Biography: 

Deirdre Fetherstonhaugh is a researcher and academic ethicist. Her research focuses on: the translation of research evidence into practice; the ethical implications of clinical practice; decision-making for people with dementia; sexuality and dementia; and clinical risk in aged care. Deirdre also develops and delivers education to health professionals and aged care workers. She is an associate professor and director of the Australian Centre for Evidence Based Aged Care (ACEBAC) at La Trobe University.

Constitution of ‘the dying’: Voluntary assisted dying law reform in the Australian state of Victoria

Courtney Hempton,1Catherine Mills

1Monash University, Clayton, Victoria, Australia.

In June 2019 Victoria will become the first state in Australia to provide access to lawful ‘voluntary assisted dying’. Voluntary assisted dying refers to ‘assistance to die provided in medical context’, and encompasses life-ending practices often distinguished as physician-assisted suicide and active voluntary euthanasia. Significantly, in devising voluntary assisted dying exclusively for those medically prognosed to die ‘within weeks or months’, the state constructs the bounds of a new medico-legal category — the dying. The principle aim of this presentation is to explore the category of ‘the dying’ as conceived in the Victorian context. Initially, we examine how the category of the dying is given shape by the articulation of guiding principles. We trace emergence of the category across the process of development of the Voluntary Assisted Dying Act 2017 (Vic), beginning with a state Parliamentary Inquiry into End of Life Choices that was established in 2015, through to debate on the eventuating Voluntary Assisted Dying Bill 2017 (Vic). Subsequently, we explore ethical implications of the category of the dying. First, we critique the ways in which dying interacts with discourses of autonomy and choice, to demonstrate that relatively conservative medical criteria operate to circumscribe and make possible autonomy for some persons and not others. Second, we examine how the category of the dying establishes medical practitioners as gatekeepers of access to assisted death. We argue the category of ‘the dying’ enacted by the Victorian state contributes to a medicalisation of dying that ultimately undermines autonomy at the end of life.


Biography: 

Courtney holds a Master of Bioethics, and is a PhD Candidate, Teaching Associate, and Research Assistant with the Monash Bioethics Centre at Monash University. She has particular interest in the regulation of dying and death, and her doctoral thesis focuses on the emergence of law and policy regarding ‘voluntary assisted dying’ in the Australian state of Victoria. Courtney serves on the Monash Health Clinical Ethics Committee, the Natural Death Advocacy Network Executive Committee, and the Student and Early Career Researcher Stream Committee of the Australasian Association of Bioethics and Health Law. Connect with Courtney on Twitter @CourtneyHempton.

Informed consent and professional liability for causation of harm post Montgomery

Tracey Carver1, Dr Malcolm Smith1

1Senior Lecturer, QUT Law School, Australian Centre for Health Law Research, QUT Faculty of Law

In Montgomery v Lanarkshire Health Board [2015] AC 1430, the UK Supreme Court confirmed that, under the law of negligence and prior to obtaining a patient’s informed consent to medical treatment, information must be disclosed if it would be significant to a particular patient’s decision-making. What is required is ‘reasonable care to ensure that a patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments’ (para 87).

In outlining this obligation, Montgomery departs from the rule in Bolam and adopts the same test for identifying ‘material risks’ as previously formulated for Australia in Rogers v Whitaker (1992) 175 CLR 479. In doing so, it focuses upon the significance of information from the patient’s (not the profession’s) perspective and confirms that ‘responsibility for determining the nature and extent’ of patient rights to autonomous decision-making ‘rests with the courts, not with the medical profession’ (para 83).

However, liability will not arise unless a patient can establish that harm in the form of a non-disclosed risk occurred, and was caused by the information’s non-provision. Commentators are therefore curious whether Montgomery’s wider approach to the duty of disclosure will be met by a more rigorous application of causation principles. The aim would be to limit liability, but in turn this could also limit patient autonomy protection.

In considering causation in Wallace v Kam (2013) 250 CLR 375, the Australian High Court did limit the scope of professional liability in this area to the occurrence of physical injury the risk of which was ‘unacceptable’ to the patient. This presentation discusses these developments in negligence liability for informed consent, and in particular whether the same approach to causation as adopted in Wallace v Kam is likely to be taken in future failure to warn cases in the UK.


Biographies:

Tracey researches in the area of health governance and regulation at QUT, with a focus upon Torts law including medical negligence, the formulation of duties of care, causation and damages assessment, together with patient consent and decision-making. She coordinates the Law School’s undergraduate Torts unit.

Malcolm teaches and researches in health law. His research focuses on the law relating to children and medical treatment and the legal and ethical issues associated with assisted reproductive technology, particularly embryo selection technologies. He has a particular interest in consent issues, including parental consent and decision-making by children, as well as clinical negligence liability.

Withholding and withdrawing life-sustaining treatment are not morally equivalent

Dr Andrew McGee1, Dr  Drew Carter2

1Australian Centre for Health Law Research, QUT, Brisbane, Australia, 2Adelaide Health Technology Assessment (AHTA), School of Public Health, University of Adelaide, Adelaide, Australia

This presentation examines what has been called the Equivalence Thesis in respect of withdrawing and withholding life-sustaining treatment (LST). The Equivalence Thesis holds that there is no morally relevant difference between withholding and withdrawing LST: wherever it is morally permissible to withhold LST, it is morally permissible to withdraw LST, and vice versa. Several prominent bioethicists hold the Equivalence Thesis to be true, including John Harris, Dominic Wilkinson and Julian Savulescu. Some of these writers use the Equivalence Thesis to argue for greater rationing in the ICU, with a view to maximising the sum total of lives saved. We argue, however, that the Equivalence Thesis is false, and so cannot be used to support an argument for greater rationing in the ICU. We do not argue against greater rationing, but argue only that the Equivalence Thesis cannot be used to support the case for greater rationing.


Biography:

Dr Andrew McGee is a moral philosopher and legal scholar with expertise in bioethical controversies, especially at the end of life. He was admitted to practice as a lawyer to the Supreme Court of Queensland and the High Court of Australia in 2006. He holds a PhD in philosophy from the University of Essex, and is currently Senior Lecturer in the Faculty of Law, QUT.

Dr Drew Carter is a moral philosopher and health policy researcher. He applies the work of Ludwig Wittgenstein to illuminate bioethical issues, especially relating to resource allocation.  He has published on assisted reproductive technology and pain.  His current research focuses on intensive care triage and the managed entry of health technologies.

Hazardous changes in clinical practice

Dr Judith Kennedy1

1Consulting Rooms, Manly, Australia

Medical practitioners treat patients. They can also make a wider contribution to society through opportunistic use of the treatment episode for activities such as research, teaching or encouraging organ donation. Irrespective of the purpose of the activity, there are two ethical constants governing doctor behaviour in all settings that are so objectively clear they would seem to require no further explanation. The first is the requirement of consent of the person before things that are done to them.  The second is the prohibition on killing. Using Australian examples on the public record, this paper points to a shift in practice with respect to these two constants. The shift is from regarding the ethical constants as constraints, to regarding them as concerns to be balanced against other factors.


Biography:

Judith Kennedy is a psychologist who has worked in public and private health sectors for over 20 years with a long standing interest in problematic treatment behaviour . She has an MA in Ethics in Healthcare and PhD in Professional & Applied Ethics.

Mental health care in the age of empowerment

Nicole Shepherd1

1University Of Queensland, Herston, Australia

In this talk I present an analysis of program designed to support people with serious mental illness to live in the community.  Policy documents and interviews with 95 staff involved in program delivery were analysed using a Foucauldian governmentality approach.  A discourse of choice, freedom and empowerment was reflected in the program design.  This discourse was shaped by the recovery movement, a health social movement that sought to increase the autonomy of service users. While promoting autonomy is important, the principle of solidarity could be more highly valued than it is currently. Embracing the principle of solidarity would provide the ethical justification for funding a wider range of services in the community that facilitate meaningful opportunities for participation.  We need to change the paradigm of mental health care and assert that living well is not just the ability to be free, but the ability to be engaged in enriching relationships with others as valued members of the moral community.


Biography:

Nicole Shepherd is a sociologist with an interest in mental health policy and critical social theory.  Her previous publications have explored the implications of the recovery approach for workers in mental health care.  She is a Lecturer in Ethics and Professional Practice at the Faculty of Medicine at the University of Queensland.

Researcher-Native Relations: Ethical considerations relating to emerging animal models in Australian science

Prof. Rachel A. Ankeny1, Karina Burns

1University Of Adelaide, Adelaide, Australia

This paper considers ethical issues relating to the use of native animals as emerging models in contemporary Australian research. Native animals often hold special social and cultural significance both within and outside of their home countries. In this paper using published scientific literature, supplemented by interviews and popular media coverage, we explore how researchers working with native Australian species think about their animal research subjects and how these attitudes or ways of thinking are influenced by broader structures such as existing norms within society and in various types of research as well as popular conceptions about ferals, invasives, or protected species. We also investigate the silences present when native organisms are utilized for research, and show ways in which native animal models simultaneously have multiple roles and types of relations with respect to researchers. We thus contend that in order to thoroughly consider the ethics of research with native animal models, it is critical to understand researcher-animal relations as deeply situated in relation to the particularities of the models utilised and closely tied to scientific practices.


Biography:

Professor Rachel A. Ankeny is in the School of Humanities (History and Philosophy) at the University of Adelaide, where she also serves as the Associate Dean Research and the Deputy Dean of the Faculty of Arts, and Vice President of AABHL. An interdisciplinary teacher and scholar whose areas of expertise cross three fields (bioethics and science policy, history/philosophy of science, and food studies), she is team leader of the ARC Discovery Project “Organisms and Us: How Living Things Help Us To Understand Our World.”

Inducement in research and lotteries – can a chance really be compensation?

A/Prof. David Hunter1

1Flinders University, Adelaide, Australia

The National Statement forbids the use of inducements to recruit research participants, but allows the appropriate compensation of participants for the time, inconvenience and out of pocket expenses involved in participating. One form of compensation that is commonly offered is a chance to win something. In this paper I will argue that this practice is more likely to function as an inducement than compensation and is unlikely to compensate participants for their involvement in research appropriately. Finally I will discuss whether the absolute prohibition of inducement in the National Statement is defensible.


Biography:

David teaches medical ethics at Flinders University Medical School and chairs their social and behavioral ethics committee. His background is in philosophy and his research interests include political philosophy, medical ethics and research ethics.

The “shazam” moment in empirical bioethics

Prof. Angus Dawson1

1Sydney Health Ethics, University Of Sydney, Australia

For the purposes of this talk I assume that in bioethics we wish to establish a substantive ethical conclusion about some issue in health or the life sciences. In the light of this I will explore how we can and should conceptualise the interface between the empirical and the normative in empirical bioethics. What, exactly, is the basis of this apparently magical “shazam” moment? First, I will explain why my question is not a version of the traditional is/ought (logical) objection deriving from Hume, and I will suggest how anyone working in empirical bioethics can sidestep that problem (if they are willing to accept the relevant commitments). Second, I will, instead, focus on what I term the question of methodological intention: a requirement for greater clarity about what role any empirical component plays in any bioethical project. This is important because there are various very different functions for the empirical and the normative. For example, a non-exhaustive list might include the following:

  • Hypothesis Testing: where a prior normative hypothesis is tested against the ‘real world’ through empirical work.
  • Explanation: where normative concepts or theories are used to explain some empirical findings.
  • Deliberation: where it is assumed that any empirical findings about the public’s views have determinative normative weight in policy choices.
  • Understanding: where empirical work allows greater insight into relevant complexity or context as a means of informing normative argument.
  • Coherence: where the empirical and normative are in ‘reflective equilibrium’.

I will explore the way that the ‘shazam’ moment is structuring in each case. My point is not to suggest that any of these approaches are at least prima facie problematic, just that they are very different tasks. Each one involves a prior set of substantive commitments and these should be articulated and defended.


Biography:

Angus Dawson is Professor of Bioethics and Director of Sydney Health Ethics at the University of Sydney. His main research interests are in public health ethics, global ethics and research ethics.

One Health, rabies prevention and more-than-human considerations in Indigenous communities in Northern Australia

Dr Chris Degeling1, A/Prof  Tess Lea3, Dr Victoria  Brookes4, Prof  Michael Ward4

1Research For Social Change, Faculty of Social Science, University of Wollongong, Australia, 2Sydney Health Ethics, University of Sydney , Australia , 3Faculty of Arts and Social Sciences, Dept. of Gender and Cultural Studies , University of Sydney , Australia , 4School of Veterinary Science, University of Sydney , Australia

The spread of rabies in eastern Indonesia poses a risk to northern Australia.  Dogs are numerous in East Arnhem Land (EAL) and the Northern Peninsular Area (NPA), usually unrestrained and living in close human-dog relationships. The response to any rabies outbreak on Australian territory will focus on dog vaccination, controlling dog movements and depopulation. A One Health approach to zoonotic diseases should seek to co-promote human and animal health, whilst also seeking to accommodate the preferences of affected communities. We report on 4 community panels/workshops and >40 semi-structured interviews conducted with: (i) EAL and NPA community members; (ii) Indigenous Rangers in EAL and NPA; and (iii) residents of Cairns, the local regional centre. We used storyboard methodologies to work with participants to explore the following questions:

  1. What do people who live in EAL, the NPA and Cairns think should and should not be done if a rabies incursion was to occur?
  2. How should the interests of individuals, communities, and nonhuman animals be accommodated in such a response?
  3. What are the roles and responsibilities of dog owners and other community members in the event of a rabies incursion?

Australia is currently rabies free; therefore, the results of this study can inform control strategies that are more in keeping with community values. We found that the capacity of community members in the NPA and EAL to contribute and/or adapt to a biosecurity response is likely to be limited by material disadvantage, dominant cultural norms and food security concerns. Responsible ownership means different things within and across the study settings; the cultural value placed on dogs/dingoes is variable and conditional. Adopting a ‘strengths-based’ approach mandates that the communities at greatest risk need to be helped to prepare for and develop strategies to manage a biosecurity response to a rabies incursion.


Biography:

Chris is a health social scientist, philosopher, and practicing veterinarian who works in the social studies and ethics of public health. At the completion of his PhD (2009) he undertook a further 18 months training in qualitative research methods and population health intervention cross-appointed to the O’Brien Institute of Public Health and Veterinary Faculty at the University of Calgary, Canada. He is currently a Senior Fellow at Research for Social Change at the University of Wollongong where he leads the NHMRC funded project: Can One Health strategies be more effectively implemented through prior identification of public values?

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About the Association

The Australasian Association of Bioethics and Health Law (AABHL) was formed in 2009.

It encourages open discussion and debate on a range of bioethical issues, providing a place where people can ask difficult questions about ideas and practices associated with health and illness, biomedical research and human values.

The AABHL seeks to foster a distinctive Australasian voice in bioethics, and provide opportunities for international engagement through its membership, journal and conferences.

Members come from all the contributing humanities, social science and science disciplines that make up contemporary bioethics.

Many members have cross-disciplinary interests and all seek to broaden the dialogues in which all members of the wider community ultimately have an interest.

The AABHL is a supportive, creative and challenging community that provides a rich source of continuing academic refreshment and renewal.

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