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.

The boundaries of embryo research: Extending the 14-day rule

Caitlin Davis1

1Australian National University

The disciplines of ethics, science and the law often conflict when it comes to determining the limits and boundaries of embryo research. Under current Australian law and regulations, and in various other jurisdictions, research conducted on the embryo in vitro is permitted up until day 14, after which, the embryo must be destroyed. Reproductive technology and associated research is rapidly advancing at a rate that contests current societal and ethical limits surrounding the treatment of the embryo. This has brought about the question of the adequacy of the 14 day rule and whether it is necessary for it be reconsidered and reformed. This paper will highlight some of the tensions that exist in ethics, science and the law in relation to the extension of the rule. It will be concluded that any move to extend the rule must be accompanied by close consultation with the public as the ultimate stakeholders in how the future of reproductive technology is created, constructed and contested.


Biography:

I am in my fourth year of study at the Australian National University, studying a Bachelor of Arts/Law. Throughout my degree I have developed a strong interest for bioethics and health law. I am particularly interested in how emerging technologies, such as reproductive technologies, can impact upon and interact with our legal system. I evince considerable interest for advocating information with regard to current issues in bioethics and believe it is vital that the community understands how scientific developments are used in an ethical way.  I have aspirations to continue my studies in bioethics as a postgraduate student.

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.

Through a glass darkly – evolving a practice of supported decision-making in the absence of a legal framework

Dr John Hopkins1

1Psychological Medicine, Middlemore Hospital, Auckland, New Zealand, ,

Supported decision-making involves providing support to people whose decision-making ability is impaired, to enable them to make their own decisions wherever possible. Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) confers the right to enjoy legal capacity on an equal basis with others; and the twin obligations of governments to – ensure that those who need it to exercise their legal capacity receive access to support; and ensure safeguards are in place to prevent abuse when exercising their legal capacity. New Zealand was quick to sign the CRPD in 2007, then ratify it a year later and has actively supported its evolution. New Zealand’s guardianship legislation, The Protection of Personal Property and Rights Act (PPPR Act) 1987, was initially considered consistent with the CRPD, but over time concerns have emerged that revision of the New Zealand legislation is required to make it fully conform with Article 12 of the CRPD. The PPPR Act is underpinned by the principles of – presumption of capacity; maximising a person’s capacity; allowing the freedom to make unwise decisions; and making the least restrictive intervention. These principles implicitly assume there is a role for supported decision-making. However, the PPPR Act does not explicitly provide a framework for the development or application of supported decision-making – there is no definition included; no guidance or instruction on when to use it or how; and the only legal remedies stipulated are various forms of substituted decision-making. So in the absence of a clear legal framework, clinicians are left evolving their practice of the support and assessment of capacity by ethical first principles. This presentation describes the journey of one clinician whose work frequently encompasses capacity assessment, to “peer through the glass darkly” and develop an ethical practice of supported decision-making.


Biography:

John Hopkins is an adult and old age liaison psychiatrist at Middlemore Hospital in Auckland. His clinical experience over a 30 year career includes rehabilitation, administrative, disability, adult community and old age psychiatry. He is an unrepentant “baby boomer” with particular interests in delirium, capacity assessment and co-funding for complex co-morbid conditions.

Contesting certainties and changing paradigms for young professionals: Establishing medical ethics curricula in Pakistan

Dr Sarosh Saleem1, Dr Fajar Raza2

1Shalamar Medical & Dental College, Lahore, Pakistan, 2Shalamar Medical & Dental College, Lahore, Pakistan

The pressing need for familiarity with the ethical dimensions of health care is acknowledged worldwide. United Nations Educational, Scientific and Cultural Organization (UNESCO) made ethics of science and technology, one of its five priority areas. In Pakistan, medical ethics education is still in its infancy but a few efforts are pushing towards a slow but positive change in paradigms. While ethics was previously taught passively, through doctor-patient observation, a few training programs in Ethics (mostly non-diploma) have been introduced for clinicians and researchers. Over the past decade, research ethics committees have also been established in many healthcare institutes. However, these programs have not kept pace with the growing need of bioethics training in Pakistan. Pakistan Medical and Dental Council is the authority on undergraduate medical curriculum. It has advised that Bioethics be taught to medical students but has not made it a mandatory subject. Hence, there still remains a dearth of trained professionals and organized trainings, particularly for undergraduate students.

Pakistan has a unique social, political and cultural context and interpreting and implementing core ethical values within this local context, is a big challenge. It is imperative that the curricula and protocols be tailored according to the local sociocultural milieu. Recently, a Bioethics Department has been established at Shalamar Medical and Dental College, Lahore-Pakistan. This is the only department in Pakistan that has adapted the core curriculum of UNESCO International Network of Bioethics, for undergraduate training of nursing and medical students. Our goal is to develop graduates who are not just clinically sound, but are compassionate, morally and culturally sensitive, and who will create an environment that enhances the experiences of the patients and their families. We hope that this initiative would serve as the first step of a long journey towards creating leaders in the field of ethical professionalism.


Biographies:

Dr. Sarosh Saleem is a physician trained in Pediatrics and Bioethics. She is the founding Head of Bioethics Department at Shalamar Medical & Dental College, Lahore Pakistan. This is the only department in Pakistan dedicated to undergraduate and postgraduate training of clinicians. Dr. Saleem did Masters in Bioethics (with distinction) from The Aga Khan University, Karachi-Pakistan in 2010. While working as a Specialist and Incharge of Pediatric Emergency Department, Dr. Saleem established a Hospital Ethics Committee at The Indus Hospital, Karachi-Pakistan. Later she successfully completed a Fellowship in Pediatric Bioethics from Children’s Mercy Hospital, Kansas City, MO-USA in 2017. She returned to Pakistan to establish the field of Bioethics in healthcare sector in Pakistan. Her areas of interest are End of life decision-making, socio-cultural and spiritual influences on clinical decision-making, moral distress and research ethics in developing countries. Dr. Saleem has attended and presented at many national and international forums, including Pediatric Academic Societies Conference (2016 SF-USA), American Society of Bioethics and Humanities (2016-KC, MO-USA), Medicine and Religion Conference 2016 (TX-USA). She has successfully conducted several workshops and conferences of Bioethics with participation from international speakers, in Pakistan.

Dr.Fajar Raza graduated from Aga Khan University, Karachi in 2016. She is currently working as a teaching assistant in the Department of Medical Education at Shalamar Medical and Dental College (SMDC), Lahore.She also has an avid interest in medical ethics education and is a member of the Bioethics Unit Committee at SMDC. As part of the Department of Medical Education, she has been collaborating with the Bioethics Department at SMDC to develop training sessions for healthcare professionals.

Should we offer resuscitation to babies born at 22 weeks?

Dr John Lantos1

1Childeren’s Mercy Hospital, Kansas City, Mo, United States

Survival rates for babies born at 22 and 23 weeks are steadily improving at centers that offer active treatment to these babies. For example, survival rates for these babies are about 30% in Japan, Sweden, Iowa, and Cologne. At these centers, survivors have outcomes that were similar to outcomes for babies born at 23 and 24 weeks of gestation.  Most survivors have no serious neurodevelopmental impairment (NDI) Nevertheless, many centers do not offer active treatment to babies at this gestational age.   One might expect these results to generate excitement, emulation, and replication.  Instead, the results are misrepresented by professional societies.  For example, One might expect that such a startling medical breakthrough would stimulate excitement, admiration, emulation, and research.  Oddly, it seems to have generated none of those things.  Instead, key professional societies have either ignored or misrepresented the outcome data.  For example, a 2016 statement by the American College of Obstetrics and Gynecology (ACOG) and the Society for Maternal and Fetal Medicine (SMFM)  wrote that “delivery before 23 weeks of gestation typically results in neonatal death (5–6% survival) and among rare survivors, significant morbidity is universal (98–100%).”  In this paper, I speculate about three reasons why many centers seem loath to offer a treatment that could save thousands of lives.  First, people overestimate both mortality rates and the rates of NDI among survivors, based on experiences in which such babies received inadequate treatment.  Second, successful treatment of extremely premature babies requires an institutional commitment and cooperation between maternal-fetal medicine and neonatology.  Finally, some people worry that survival of such tiny babies might lead to tighter restrictions on legal abortion at the end of the second trimester.   In conclusion, I will recommend careful study of outcomes using best practices for both shared-decision making and neonatal intensive care.


Biography:

John Lantos, MD, is Professor of Pediatrics at University of Missouri in Kansas City and the founding director of the Children’s Mercy Hospital Bioethics Center.  Prior to moving to Kansas City, he was a Professor of Pediatrics, Chief of General Pediatrics, and Associate Director of the MacLean Center at The University of Chicago. He has served President the American Society of Bioethics and Humanities as well as of the American Society of Law, Medicine, and Ethics.

From Kansas City, he directs an innovative, on-line program that is training a new generation of scholars from around the world in pediatric bioethics.

An ethical framework for antenatal counselling at the threshold of viability

Dr Andrew Hutchinson1

1Grantley Stable Neonatal Unit, Royal Brisbane and Women’s Hospital, Herston, Australia, 2University of Queensland, Faculty of Medicine, Herston, Australia, 3Department of Paediatrics, Mackay Base Hospital, Mackay, Australia

Extreme prematurity presents a number of challenges for health systems, clinicians and families. While advances in neonatal and perinatal medicine have increased the survival of babies who are born below 26 weeks gestational age, substantial morbidity remains prevalent in this population. In Australia, there is general consensus that the threshold of viability for premature infants exists between 23 weeks and 26 weeks gestational age. Life sustaining interventions for babies who are born prematurely are generally not recommended below 23 weeks gestational age and universally recommended above 26 weeks gestational age. At the threshold of viability, health professionals counsel parents and facilitate informed decision-making prior to delivery regarding the provision of life sustaining interventions or palliative care. Counselling involves a family-centred approach that explores parental values alongside education about prematurity and the risks of morbidity, disability and death. International studies suggest that there is widespread variation in antenatal counselling practices and that parental involvement in the decision-making process is inconsistent. Improving outcome data for survival, morbidity and disability dominates discussion in the academic literature around determination of the best interests of periviable infants and moral obligations to initiate life-sustaining interventions. This paradigm influences the dynamics of antenatal counselling and challenges the moral and legal role of parents in determining best interests and reaching informed decisions. A literature review has identified key social and ethical considerations for antenatal counselling at the threshold of viability that support the formulation of an ethical framework guided by principlism and discourse ethics. Fundamental principles include beneficence, respect for autonomy, partnership and trust. An ethical framework will provide a foundation for clinician counselling practices that supports collaborative, informed decision making at the threshold of viability in the best interests of infants and their families.


Biography:

Andrew Hutchinson is an advanced trainee in general paediatrics and neonatal / perinatal medicine with the Royal Australasian College of Physicians. He is completing a masters of public health and health management through the University of New South Wales involving the study of ethics and law in public health. He has a special interest in antenatal counselling for extreme prematurity including the dynamics of communication with parents.

Remember when health ethics seemed simple

A/Prof. Clare Delany1

1Children’s Bioethics Centre, Royal Children’s Hospital, Melbourne , West Brunswick , Australia

In simpler times (1767), doctors informed patients so they could take courage for whatever the doctor deemed necessary.  Doctors’ ethical obligations seemed simple; decide necessary and appropriate treatment and administer it. Patients’ separate or differing values were a likely hindrance to good care.  This was especially so for children, where clinical goals trumped all other interests.

‘Taking courage’ was overtaken in 1914 by the more enlightened view that patients should determine what is done to their body.  But even with this progress, the decision-making, mode of communicating and overall authority remained clearly and simply, with and determined by the doctor.

Fast forward to 2018. Children have rights and interests.  Parents have moral authority to decide what is best for their child.  A clinician’s advice concerning treatment is now only one component of the information informing parents and children. Social media, crowdfunding and “dr google” make ethical responses by doctors anything but simple.  The discharge by doctors of their ethical roles and obligations can only be described as complex. Some question whether doctors are needed at all.  In this talk I discuss how ethical goals and standards developed for simpler times might be used for today’s complex times.


Biography:

Associate Professor Clare Delany, PhD, Master Hlth and Med Law, Master of Physio, BApp Sci (Physio)

Clare Delany is a clinical ethicist at the Royal Children’s Hospital Children’s Bioethics Centre in Melbourne.  She is also an Associate Professor at the University of Melbourne, Department of Medical Education, where she is responsible for coordination of research higher degrees and the masters year of the EXCITE (Excellence in Clinical Teaching) program. Clare is Chair of the University of Melbourne ‘Education, Fine Arts, Music and Business’ Human Research Ethics Committee.  Clare’s research expertise is in the area of qualitative methodology and methods and this is applied across broad subject areas of clinical ethics, clinical education and paediatric bioethics.

Computer knows best? The need for value-flexible AI in patient care 

Dr Rosalind McDougall1

1University Of Melbourne, Melbourne, Australia

Artificial intelligence is increasingly being developed for use in clinical care.  AI-based diagnosis has been shown to be highly accurate in several clinical contexts compared with experienced doctors.  AI can conduct a vast analysis of published evidence in order to generate ranked treatment options for an individual patient.  This paper aims to contribute to systematic discussion of the relationship of AI to our current conceptual knowledge in medical ethics.  In this paper, I investigate the relationship between AI and the ethical ideal of shared decision-making in healthcare.  My focus is specifically on AI systems that generate treatment recommendations, such as Watson for Oncology. I argue that involving AI in ranking treatment options poses a substantial threat to shared decision-making.  Ranking treatment options involves value judgements.  If these value judgements are fixed and covert in AI systems, then we risk a return to paternalistic medical care.  However, if designed in an ethically-informed way, AI could offer a potentially powerful way of supporting shared decision-making.  It could be used to incorporate explicit value reflection, promoting patient autonomy. I put forward the concept of value-flexible AI – AI that can respond to the values and treatment goals of individual patients – and argue that, in the context of patient care, there is an urgent need for AI systems to be designed to be value-flexible.


Biography:

Dr Rosalind McDougall is a Senior Lecturer in Health Ethics in the School of Population and Global Health, University of Melbourne, Australia.  She has published widely in clinical ethics and reproductive ethics.  She recently co-edited When Doctors and Parents Disagree: Ethics, Paediatrics and the Zone of Parental Discretion (Federation Press, 2016).

A world first 3D printed tibial implant: Recognising and managing the risk of ethical slippage at the boundary of research and clinical practice with respect to innovative technology

Dr Jenny Jones1

1Metro South Health, Brisbane, Australia, 2Princess Alexandra Hospital, Brisbane, Australia

The growth of innovative technologies through collaborative research is leading to increased ethical challenges within the clinical environment. Drawing on a recent case consultation, this paper addresses questions such as: is it ethical to offer a patient an unproven technology despite promising indications being present? And conversely, is it ethical to withhold such technologies? Furthermore, how can we, the clinicians, organisational leaders and clinical ethicists, ensure no slippage occurs in respect to the principles of informed consent and the researcher-clinician’s enthusiasm to “trial” an unproven technology on a vulnerable patient?

Background: Large bone defects are a reconstructive challenge. If extensive they may be considered unreconstructable. Limb amputation may be the only treatment option. Three-Dimensional printed biomaterials are an emerging technology for bone replacement. Encouraging results have been achieved by combining this technology with living biological material in an animal model.

Methods: An adult male with an acquired 34cm tibial defect was referred to our institution’s complex lower limb clinic. At that time, preliminary results of three-dimensional printed models, combined with living tissue that has regenerative capacity in long segment bone defects using an aged sheep model, were available in consultation through our preclinical research collaborators. These results, though encouraging, were inconclusive.

Results: Following consultation with our Clinical Ethics Committee, the patient underwent tibial reconstruction in a 14 hour procedure on the 24/8/2017. There were no immediate or early post-operative complications. The patient was discharged on post-operative day 14. His first follow-up CT scan show an impressive volume of regenerate bone in the proximal reconstruction. This is the most extensive bone reconstruction performed to date.

Conclusion: Whilst the surgery and its early results are remarkable, it is important to both recognise and manage the risk of ethical slippage at the boundary of research and clinical practices in respect to innovative technologies.


Biography:

Dr Jenny Jones is the Coordinator of the Metro South Clinical Ethics Service. The core functions of her role are to assist staff build their ethical capacity, knowledge and practice, provide practical support by way of Clinical Ethics Consultation, and support the ethical climate of the organisation. She is a member of the Metro South Clinical Ethics Committee, Metro South Human Research Ethics Committee, Children’s Health Queensland Clinical Ethics Consultation Service and Queensland Forensic and Scientific Services Human Ethics Committee. She is also an Adjunct Lecturer, School of Medicine, Griffith University.