Person-centred care: navigating ethical tensions and uncertainties

Person-centred care: navigating ethical tensions and uncertainties

The idea that health professionals should respect patients as persons, including by being mindful of their autonomy, is widely accepted and taken as commonplace. But experiences of healthcare, perhaps particularly for long-term conditions, often indicate shortfalls in this domain. These shortfalls have not been readily alleviated by interventions that exhort and train health professionals to become more ‘person-centred’ by adopting particular processes, for example of shared decision-making or patient-led goal-setting.

In this talk I advocate more serious consideration of the challenges of respecting patients as persons, and of how commitments to person-centred care can come into conflict with ideas about good clinical practice that are deeply embedded in many healthcare systems. I illustrate how a series of empirical research activities and knowledge exchange events with health professionals: prompted our research team to ask questions about the purposes of healthcare for people with long-term conditions; illuminated neglected ethical tensions and uncertainties in health professionals’ efforts to respect and enable patients; informed the development of a normative argument for adopting a broad view of the purpose of healthcare and for recognizing the need to support health professionals to navigate the ethical challenges that will inevitably arise in pursuit of that purpose; and facilitated recognition of important considerations for practical efforts to foster more deeply respectful or person-centred care.


Biography:

Vikki Entwistle has recently taken up the position of Professor and Director of the Centre for Biomedical Ethics at the National University of Singapore.

Vikki’s research is highly interdisciplinary and collaborative. She draws particularly on social sciences and philosophy, and works with clinicians and patient-advocates as well as academic colleagues to develop practically useful thinking about how healthcare policy and practice can contribute to human flourishing. Vikki is currently particularly interested in the ethical tensions that arise in the pursuit of healthcare that is good in multiple senses at once.

Vikki’s interests in ethics developed in the context of applied health services research. In the mid-1990s while working to develop information to help patients and health professionals consider the effectiveness of different healthcare options, she saw a need for judgements of effectiveness to better reflect patients’ perspectives. She then started to raise and tackle questions about patients’ involvement in both treatment decision-making and research agenda setting. Several of her studies of patients’ perspectives illuminated important shortfalls in the prevailing choice-dominated discourse on patient involvement. A turn to feminist writing on relational theorising about autonomy, and a capabilities approach to thinking about quality of life, facilitated the development of more robust conceptions of notions of ‘shared decision-making’, ‘support for self-management’ and communication about screening (among others).

Together with Professor Alan Cribb (King’s College London), Vikki has recently secured a Wellcome Trust collaborative award to investigate what applied philosophy and ethics can offer to quality improvement work in healthcare.

Euthanasia and vulnerable groups. Belgium on a slippery slope?

In 2002, the Belgian Parliament adopted a law on euthanasia, making this medical practice legal if strict due care criteria have been met. Anno 2018, there is more than 15 years of experience with the implementation of this law. The slippery slope argument in the debate on euthanasia is by far the most common consideration presented against legalizing of euthanasia in end-of-life medical practice. The basic idea of a “slippery slope” is simple: even if the legalizing euthanasia can be a honorable answer to unbearable and endless suffering for some patients, it will surely lead to bad things, and it will be the first step on a downhill slope full of risks for abuse of such a law. In this presentation we will mainly focus on the empirical slippery slope argument, and more specifically based on Belgian data, we will explore whether supposedly vulnerable groups more frequently die from euthanasia after 15 years of experience. In short, if the Belgian experience tells us anything about the slippery slope, the available data seem to suggest that legalization of euthanasia leads to lower incidence of euthanasia in vulnerable groups as compared to the early adopters of this law, the high educated younger cancer patients.


Biography: 

Prof Luc Deliens has a PhD in Health Sciences and MSc in Sociology. Since 2000, he is Director of the End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, in Belgium (www.endoflifecare.be). He is currently a professor of Palliative Care Research at the Department of Medical Oncology at Ghent University and at the Department of Family Medicine and Chronic Care at the Vrije Universiteit Brussel. Between 2005 and 2014 he was also Professor of Public Health and Palliative Care at the EMGO Institute for Health and Care Research, VU University medical center in Amsterdam (www.emgo.nl (link is external)) and founding chair of the Palliative Care Center of Expertise Amsterdam. He received several scientific awards and has published more than 400 papers and book chapters. His work has been supported by grants from the EU FP5 to FP7, FWO Research Foundation – Flanders, IWT the Flemish Government Agency for Innovation by Science and Technology, DWTC the Belgian Federal Ministry of Science Policy, VWS the Dutch Ministry of Public Health, ZONMW the Netherlands Organisation for Health Research and Development, the Research Fund of the VUB, King Baudouin Foundation and other leading medical and health charities. In 2009, he became the first member of the Royal Academy of Medicine of Belgium to represent palliative care and end-of-life care in the Academy. Internationally, he is the founding chair of the International Collaborative on End-of-Life Care Research (ICER), and Co-Chair of the European Association for Palliative Care research network (EAPC RN). He is advisor for many international journals, grants agencies and science foundations, e.g. the Swiss National Science Foundation, the Netherlands Organisation for Health Research and Development (ZONMW) and German Federal Ministry of Education and Research (BMBF).

‘Indigenous biobanking’: Prospects and promise

In the 1960s and 70s, scientists at the John Curtin School of Medical Research of the Australian National University (ANU) organised the collection of thousands of blood samples from Aboriginal and Torres Strait Islander Australians living on missions and government stations across WA, NT and Qld. These samples were used for research into human genetic diversity and the history of population movements up until the late 1990s, when concerns within the institution about the continued use of the samples led to a voluntary moratorium on research. Beginning in 2010, I worked with the ANU to develop a strategy for managing the collection, beginning with the appointment of an external Indigenous Expert Committee to advise the university. This led to the development of the National Centre for Indigenous Genomics (NCIG), the first Indigenous-governed genome facility in the world. This presentation will outline the development of NCIG and some of the ethical innovations involved. It will consider the role of Indigenous ethics in relation to ‘mainstream’ biobanking ethics and the potential impact of the upscaling of biobanking that may accompanying the rise of precision medicine.


Emma Kowal is Professor of Anthropology in the Alfred Deakin Institute at Deakin University, Convenor of the Deakin Science and Society Network and former Deputy Director of the National Centre for Indigenous Genomics at the Australian National University. Her current appointments include membership of the Steering Committee of the Genomics Health Futures Mission, a major investment of the Australian Government in precision medicine.

Whiteness as a bioethical problem

Dr Christopher Mayes

Research Fellow, Alfred Deakin Institute at Deakin University and Research-Affiliate in Sydney Health Ethics at the University of Sydney

In March 2018 the Nursing and Midwifery Board of Australia (NMBA) released new editions of their codes of conduct, standards of practice, and code of ethics. In the glossary section, “cultural safety” was described (among other things) as providing “a de-colonising model of practice based on dialogue, communication, power sharing and negotiation, and the acknowledgment of white privilege”. Conservative media commentators reacted by claiming that white nurses were being asked to apologise for being white prior to caring for Aboriginal and Torres Strait Islander patients. Media personality Andrew Bolt called the code a new form of racism and Senator Corey Bernardi characterized the situation as a “new medical Marxism”. These responses serve to illustrate the sensitivity some sections of Australian society have to examining whiteness and white privilege in general, and health institutions in particular.

In recent years, whiteness studies has emerged as a way of examining race relations and the effects of racism by focusing on assumptions that “white” occupies a position of normalcy and neutrality. Black feminist scholars such as Audre Lourde have been significant in turning the critical focus from the racialised other to the institutions, beliefs, systems, and practices that do the work of racialising, while reinforcing white privilege. In Australia, this has meant that instead of focusing exclusively on the injustices suffered by Aboriginal and Torres Strait Islander peoples, the whiteness analytic lens allows scholars such as Irene Watson and Aileen Moreton-Robinson to draw attention to the material conditions, histories, ideas, and practices that make such racialised injustices possible, and even normal.

This paper explores the historical legacy and contemporary implications of whiteness in the provision of health care, health-related research, and bioethics itself to ask: If biomedicine and bioethics are implicated in the privileging of whiteness, is it possible to begin a process of de-colonisation and move towards a post-colonial bioethics?


Biography:

Christopher Mayes is a Research Fellow in the Alfred Deakin Institute at Deakin University and Research-Affiliate in Sydney Health Ethics at the University of Sydney. He is an interdisciplinary scholar with disciplinary backgrounds in philosophy and sociology. His research interests include food ethics, the history of bioethics in Australia, and social and political theory. He is the author of The Biopolitics of Lifestyle: Foucault, Ethics, and Healthy Choices (Routledge, 2016), which critically explores the use of lifestyle rhetoric and policies to govern individual choice and secure population health from the threat of obesity. His forthcoming monograph, Unsettling Food Politics: agriculture, dispossession, and sovereignty in Australia (Rowman & Littlefield International), examines contemporary political and ethical discourses of food and agriculture in Australia.

In 2017, he received a Discovery Early Career Research Award from the Australian Research Council to research the history of bioethics in Australia. Bioethics in the Antipodes: a history of Australian bioethics since 1980 (DE170100550) aims to provide a comprehensive account of bioethics in Australia. Using archival sources, interviews, and theoretical analysis, this project will advance understanding about the distinctive local and global contributions of Australian bioethics to regulatory frameworks, legal reform, and public discourse.

Professor Richard Murray

Professor Richard Murray is the Dean of the College of Medicine and Dentistry at James Cook University and the President of Medical Deans Australia and New Zealand. His career focus has been in rural and remote medicine, Aboriginal health, public health, tropical medicine, medical and health professional education and the healthcare needs of underserved populations. He has a national and international profile in rural medical education and rural medicine and has held a range of leadership positions.

Professor Murray is also a Director on the Board of the Mackay Health and Hospital Service and a past President of the Australian College of Rural and Remote Medicine.

Prior to joining JCU as Planning Director of the Rural Clinical School in 2005, Professor Murray spent 14 years in the remote Kimberley region of Western Australia, including 12 years as the Medical Director of the Kimberley Aboriginal Medical Services Council, a position in which he had broad-ranging clinical, population health, teaching, research and medical leadership and management roles.

Professor Michael Selgelid

Professor Michael Selgelid is Director of the Monash Bioethics Centre; Director of the World Health Organization (WHO) Collaborating Centre for Bioethics at Monash; and Chair of the Global Network of WHO Collaborating Centres for Bioethics. He is also an Adjunct Professor in the School of Public Health and Preventative Medicine at Monash and a Monash-Warwick Honorary Professor in the Department of Politics & International Studies at the University of Warwick (UK). 

He is a member of the Scientific Committee of the Brocher Foundation in Hermance (Geneva), Switzerland; and he serves on the Ethics Review Board of Médecins Sans Frontières and the General Ethical Issues Sub-committee of the Alfred Hospital Ethics Committee (in Melbourne). Michael edits a book series in Public Health Ethics Analysis for Springer and is Co-Editor of Monash Bioethics Review. Among numerous other engagements with the World Health Organisation Michael served as an Advisor to the International Health Regulations (IHR) Emergency Committee regarding Ebola, and he was Member of the IHR Emergency Committee on Zika Virus and Observed Increase in Neurological Disorders and Neonatal Malformations.In 2015 Michael was commissioned by the US National Institutes of Health (NIH) to produce a White Paper on ethical issues associated with gain-of-function research. Michael earned a BS in Biomedical Engineering from Duke University; and a PhD in Philosophy from the University of California, San Diego, under the supervision of Philip Kitcher.

Professor Emma Kowal

Emma Kowal is Professor of Anthropology in the Alfred Deakin Institute at Deakin University, Convenor of the Deakin Science and Society Network and former Deputy Director of the National Centre for Indigenous Genomics at the Australian National University. Her current appointments include membership of the Steering Committee of the Genomics Health Futures Mission, a major investment of the Australian Government in precision medicine.

She is a cultural and historical anthropologist who previously worked as a medical doctor and public health researcher in Indigenous health before completing her PhD in 2007. Her research interests include Indigenous-state relations and settler colonialism, racism and anti-racism, and science and technology studies. She has authored over 60 peer-reviewed publications including her monograph, Trapped in the Gap: Doing Good in Indigenous Australia. She has received many grants, including three four-year fellowships from the National Health and Medical Research Council and the Australian Research Council. She has held visiting positions at Yale University, the University of California, Berkeley, the Max Planck Institute for the History of Science, Berlin, Nanjing University, China and the Universidade Federal de Santa Caterina, Florianopolis, Brazil. She is an editor of the international journal Postcolonial Studies, past convenor of the Asia-Pacific Science, Technology and Society network, member of the National Committee for History and Philosophy of Science of the Australian Academy of Science, and convenor of the international programming committee for the 2018 Society for Social Studies of Science meeting. She is an award-winning researcher and educator, receiving the 2014 Academy of the Social Sciences in Australia Paul Bourke Award for Early Career Research, a 2015 Thomson Reuters Women in Research Citation Award, and a 2013 National Citation for Outstanding Student Learning.

Dr Christopher Mayes

Christopher Mayes is a Research Fellow in the Alfred Deakin Institute at Deakin University and Research-Affiliate in Sydney Health Ethics at the University of Sydney. He is an interdisciplinary scholar with disciplinary backgrounds in philosophy and sociology. His research interests include food ethics, the history of bioethics in Australia, and social and political theory. He is the author of The Biopolitics of Lifestyle: Foucault, Ethics, and Healthy Choices (Routledge, 2016), which critically explores the use of lifestyle rhetoric and policies to govern individual choice and secure population health from the threat of obesity. His forthcoming monograph, Unsettling Food Politics: agriculture, dispossession, and sovereignty in Australia (Rowman & Littlefield International), examines contemporary political and ethical discourses of food and agriculture in Australia.

In 2017, he received a Discovery Early Career Research Award from the Australian Research Council to research the history of bioethics in Australia. Bioethics in the Antipodes: a history of Australian bioethics since 1980 (DE170100550) aims to provide a comprehensive account of bioethics in Australia. Using archival sources, interviews, and theoretical analysis, this project will advance understanding about the distinctive local and global contributions of Australian bioethics to regulatory frameworks, legal reform, and public discourse.

Professor Luc Deliens

Prof Luc Deliens has a PhD in Health Sciences and MSc in Sociology. Since 2000, he is Director of the End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, in Belgium (www.endoflifecare.be). He is currently a professor of Palliative Care Research at the Department of Medical Oncology at Ghent University and at the Department of Family Medicine and Chronic Care at the Vrije Universiteit Brussel. Between 2005 and 2014 he was also Professor of Public Health and Palliative Care at the EMGO Institute for Health and Care Research, VU University medical center in Amsterdam (www.emgo.nl (link is external)) and founding chair of the Palliative Care Center of Expertise Amsterdam. He received several scientific awards and has published more than 400 papers and book chapters. His work has been supported by grants from the EU FP5 to FP7, FWO Research Foundation – Flanders, IWT the Flemish Government Agency for Innovation by Science and Technology, DWTC the Belgian Federal Ministry of Science Policy, VWS the Dutch Ministry of Public Health, ZONMW the Netherlands Organisation for Health Research and Development, the Research Fund of the VUB, King Baudouin Foundation and other leading medical and health charities. In 2009, he became the first member of the Royal Academy of Medicine of Belgium to represent palliative care and end-of-life care in the Academy. Internationally, he is the founding chair of the International Collaborative on End-of-Life Care Research (ICER), and Co-Chair of the European Association for Palliative Care research network (EAPC RN). He is advisor for many international journals, grants agencies and science foundations, e.g. the Swiss National Science Foundation, the Netherlands Organisation for Health Research and Development (ZONMW) and German Federal Ministry of Education and Research (BMBF).

Professor Vikki Entwistle

Vikki Entwistle has recently taken up the position of Professor and Director of the Centre for Biomedical Ethics at the National University of Singapore.

Vikki’s research is highly interdisciplinary and collaborative. She draws particularly on social sciences and philosophy, and works with clinicians and patient-advocates as well as academic colleagues to develop practically useful thinking about how healthcare policy and practice can contribute to human flourishing. Vikki is currently particularly interested in the ethical tensions that arise in the pursuit of healthcare that is good in multiple senses at once.

Vikki’s interests in ethics developed in the context of applied health services research. In the mid-1990s while working to develop information to help patients and health professionals consider the effectiveness of different healthcare options, she saw a need for judgements of effectiveness to better reflect patients’ perspectives. She then started to raise and tackle questions about patients’ involvement in both treatment decision-making and research agenda setting. Several of her studies of patients’ perspectives illuminated important shortfalls in the prevailing choice-dominated discourse on patient involvement. A turn to feminist writing on relational theorising about autonomy, and a capabilities approach to thinking about quality of life, facilitated the development of more robust conceptions of notions of ‘shared decision-making’, ‘support for self-management’ and communication about screening (among others).

Together with Professor Alan Cribb (King’s College London), Vikki has recently secured a Wellcome Trust collaborative award to investigate what applied philosophy and ethics can offer to quality improvement work in healthcare.

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