The 29th Annual Canadian Bioethics Society Conference 2018
Wednesday, May 23rd, 2018
|1:00 pm - 4:30 pm||
W1: How to conduct an evaluation of ethics programs and services Show Details
How to conduct an evaluation of ethics programs and services
Background and Purpose:
Evaluating the overall impact of an ethics program within health care systems is still nascent, even though ethics programs have become increasingly recognized as a key component in the delivery of high quality patient care, organizational decision-making and practice, and research in the health sector. There is burgeoning interest to understand the value and outcome of ethics program and services in relation to overall health outcomes. However, most of the attempts to evaluate ethics programs and services are bundled with other organizational priorities for example employee opinion surveys, institutional scans and accreditation processes, undermining the independency of ethics programs and standalone in-depth analysis of the outcomes.
The workshop intends to build essential competencies of the participants to develop an evaluation plan to conduct a direct evaluation of an ethics program and services. During the workshop, the participants will be exposed to existing methodologies, frameworks and traditions related to ethics program evaluation. The participants will discuss essential steps to develop a solid plan to evaluate an ethics program. At the end of the workshop, the participants will have a template of an evaluation plan with a good understanding on how to apply the learning in their settings.
Ontario Shores Centre for Mental Health Sciences
Evaluation Research Leader
Ontario Shores Centre for Mental Health Sciences
W2: Just Health in Paediatrics: Balancing Interests, Needs and Obligations Show Details
Just Health in Paediatrics: Balancing Interests, Needs and Obligations
The intersection of (in)justice and (ill)health is well documented. Epidemiological work, now decades old, demonstrates the links between social factors – such as income, social status, access to education and employment – and health status.
Children often bear the brunt of inequities in these social factors. In their Concluding Observations of 2012, the UN Committee on the Rights of the Child noted ongoing violations of children’s rights in Canada. These violations include numerous social or system level challenges that adversely affect the health status of children in Canada: inequality in the provision of social and welfare services for vulnerable children; poverty disproportionately affecting children from minority backgrounds; barriers to access to education for children from minority backgrounds and discrimination against those children within the education system; and the gap between healthcare provision for children from indigenous backgrounds and other Canadians.
Justice issues also play out at the micro level, within health care institutions. In paediatrics, central justice concerns include: differential access to care; the clinical allocation of scarce resources; and, the tension that sometimes arises between parental decision making and the best interests of the child. Further justice-related issues also arise as demands on health teams to care for children and families with complex health needs increase, especially in navigating the available community supports (or lack thereof) as part of transitioning children home or to their home community.
This will be the 6th annual interactive Paediatric Bioethics Preconference Workshop where children in health care are considered through the lens of the Canadian Bioethics Society’s annual conference theme. This year’s theme – Just Health: Balancing Interests, Needs and Obligations – provides an excellent opportunity to reflect upon some of the most pressing ethical challenges in paediatrics today. Each of this year’s sessions will focus on a justice issue arising within paediatrics, and provide an opportunity to reflect on the ethically appropriate balance between interests, needs and obligations.
Learning objectives for participants
The Hospital for Sick Children
James Anderson is a Bioethicist at The Hospital for Sick Children, a member of the Joint Centre for Bioethics at the University of Toronto, and an Assistant Professor (status only), Institute for Health Policy, Management and Evaluation, University of Toronto. His research is currently focused on assent in paediatric research, the ethics of whole genome sequencing in paediatric care, and the conceptual foundations of research ethics.
University Health Network
Andria Bianci is a Bioethicist at the University Health Network and a PhD Candidate at the University of Waterloo. Her research interests and current publications consider decision making, consent, and vulnerable populations. Andria serves on the Clinical Ethics Committee at Surrey Place Centre (an organization that works with people with developmental disabilities) and she is an active board member of the Canadian Bioethics Society.
Head of Nephrology
University of Manitoba
Dr. Aviva Goldberg is Section Head of Nephrology in the Department of Paediatrics and Child Health, Max Rady College of Medicine, University of Manitoba. She received her MD from the University of Calgary, then went on to paediatric residency and part of her nephrology fellowship in Winnipeg. She completed her nephrology fellowship with transplant focus at the Feinberg School of Medicine (Northwestern University, Chicago, IL) where she also completed a clinical fellowship in Bioethics and Medical Humanities in 2006. Dr. Goldberg is a member of the International Paediatric Transplant Association ethics committee, and the ethics committees of Canadian Blood Services and the American Society of Paediatric Nephrology. She recently co-edited the book Ethical Issues in Paediatric Organ Transplantation, the first book solely on paediatric transplant ethics.
The Hospital for Sick Children
Dr. Rebecca Greenberg is a Bioethicist at The Hospital for Sick Children. Prior to starting her career in bioethics, she worked as a registered nurse in General Medicine. She is an assistant professor in the Department Paediatrics, a Project Investigator at SickKids’ Research Institute, and a bioethicist member of the Joint Centre for Bioethics, at the University of Toronto. Rebecca has a Bachelor of Arts (psychology) from the University of Manitoba, and a Bachelor of Science in Nursing and PhD (bioethics) from the University of Toronto. She has completed an ethics internship at Baycrest Centre and a post-doctorate fellowship in Clinical and Organizational Ethics at the University of Toronto Joint Centre for Bioethics.
Associate Professor of Bioethics
Chris Kaposy is an Associate Professor of Bioethics in the Faculty of Medicine at Memorial University in St. John’s, Newfoundland. He has research interests in cognitive disability and bioethics, and is author of Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies (MIT Press).
Associate Professor and Director of the Dalhousie Health Law Institute
Schulich School of Law, Dalhousie University
For five years, Professor MacIntosh served as the Director of Dalhousie’s Health Law Institute, advancing and supporting cross-disciplinary research, teaching and policy development in the area of health law and policy. Her personal research focus is the intersections of Canadian laws and policies with the health rights, interests and well-being of Indigenous peoples. She has written and spoken extensively on the design and delivery of health care systems that are intended to support Indigenous peoples, from mental health to community health, from primary care to health care supports while incarcerated. Recent publications concerning health governance draw upon case studies involving Indigenous children and their families’ efforts to achieve well-being inside, outside or alongside mainstream western health care institutions, and mature minors and the medical aid in dying regime.
Associate Professor and Head of the Department of Bioethics
Christy Simpson is an associate professor and Head of the Department of Bioethics in the Faculty of Medicine, Dalhousie University. She is also a member of the Ethics Collaborations Team which provides ethics support for the Nova Scotia Health Authority, the IWK Health Centre and the Nova Scotia Health Ethics Network. Christy completed her doctorate in philosophy, specializing in bioethics, at Dalhousie University in 2001. Christy has had a long-standing research interest in the role of hope in health care, including a postdoctoral fellowship at the Hope Foundation of Alberta at the University of Alberta (2000-2002).
W3: Professionalization in Healthcare Ethics Practice: Priorities for Balancing the Interests, Needs and Obligations of Practitioners, Employers and the Public Show Details
Professionalization in Healthcare Ethics Practice: Priorities for Balancing the Interests, Needs and Obligations of Practitioners, Employers and the Public
Recent efforts towards professionalization of practicing healthcare ethicists have focused on identifying an agreed set of professional expectations and guidance. With much still yet to be done toward this end, this workshop welcomes practising healthcare ethicists (PHEs), employers, accreditors and others with an interest in the continuing development of the field in Canada to consider what has been done to date and to identify next priorities for efforts in the immediate future.
The workshop will begin with a review of the ‘current state’ including results of a recent survey of the priorities identified by members of CAPHE-ACESS. Time will also be devoted to exploring the ideas of interests, needs and obligations inherent in the work of PHEs. There will also be an examination of present expectations for preparation for practice and the existence or not of corresponding opportunities within Canada for obtaining the education and experience to meet those expectations.
Participants will then work collaboratively to identify specific aims and goals for the next phase of the work of CAPHE-ACESS. Consideration will be given to the remit of each of the four original working groups (Empirical, Values, Standards and Conceptual) and their continuing relevance and priority.
A review of the deliberative engagement methodology will inform the development of a series of milestone tasks that will lead to the creation of a first suite of draft resources for consideration by various stakeholders. The milestone tasks include focused information gathering, the creation of draft documents and a plan for engagement with CAPHE-ACESS members in order to review and refine them.
These resources will provide guidance for practitioners, employers, accreditors and members of the public on the roles and standards of professionalism to be expected when practicing healthcare ethicists are involved in various capacities and contexts, including consultation and education. The resources will create a harmonized set of baseline expectations that can be shared, discussed and adopted by members of CAPHE-ACESS.
With pressure mounting from accreditors and employers to provide clarity and accountability for the work of practicing healthcare ethicists, CAPHE-ACCESS views this half day workshop as a crucial endeavor to progress the deliberations around professionalization into their next stages of development.
The intended learning objectives for this workshop include:
Toronto Central Local Health Integration Network
|4:30 pm - 5:45 pm||
Student Meet and Greet Show Details
Student Meet and Greet
Join us at the Garrison Brewing Co. to meet up with fellow students studying bioethics all across this great country of ours. We'll head to the opening night plenary and reception together!
|6:00 pm - 7:45 pm||
Opening Night Keynote Presentation: Creating Ethical Space for Indigenous-led Biological Health Research Show Details
Department of Psychiatry and the School of Nursing / Dalhousie University
UBC Faculty of Medicine’s Department of Surgery
Opening Night Keynote Presentation: Creating Ethical Space for Indigenous-led Biological Health Research
Department of Psychiatry and the School of Nursing / Dalhousie University
UBC Faculty of Medicine’s Department of Surgery
Thursday, May 24th, 2018
|7:30 am - 8:30 am||
Student Business Meeting
|8:00 am - 8:30 am||
Breakfast (and Conference Check-In)
|8:30 am - 10:00 am||
Opening Keynote Presentation: Neuroéthique, pragmatisme, et la stigmatisation envers les parties prenantes touchées par les troubles du spectre de l’alcoolisation fœtale Show Details
Director of the Neuroethics Research Unit
Full Research Professor at the IRCM (Institut de recherches cliniques de Montréal)
Opening Keynote Presentation: Neuroéthique, pragmatisme, et la stigmatisation envers les parties prenantes touchées par les troubles du spectre de l’alcoolisation fœtale
Director of the Neuroethics Research Unit
Full Research Professor at the IRCM (Institut de recherches cliniques de Montréal)
|10:00 am - 10:30 am||
Morning Networking and Refreshment Break
|10:30 am - 12:00 pm||
1A: Global Health (3 x 30 mins.) Show Details
Global Health (3 x 30 mins.)
JUSTICE, RATIONING AND THE CHALLENGES OF PUBLIC HEALTH SECURITY IN NIGERIA
Ademola Kazeem Fayemi
It is becoming increasingly difficult to ignore the significance of justice in public health security much as the role of public heal in the understanding of social security in general. While the quest for secured social existence is incessant in the political-economic history of Nigeria, apparently lurking behind such efforts is a common disorder characterized by less attention to medical justice and health security. Public policy and concerns towards state security in Nigeria have for the most part, taken various dimensions such as food, economic, social and militia at the expense of an equally fundamental kind of security – public health security. This paper, therefore, aims at engaging hitherto unexplored ethical question of justice in health care rationing in Nigeria with the prima facie consequences on public health security. By examining the justice question implicit in the rationalization of health care in Nigeria, this paper discusses issues of rights and inequality, paternalism and decent quality care, scaling of values in triage and priority-setting, confidentiality and trust in the subsisting health insurance coverage. A critical understanding of these interrelated issues is pivotal to determining the extent to which health policies have undermined social security network among different classes and components of the Nigerian society. Ultimately, this paper attempts to show the normative principles upon which health care can be prudentially and efficiently organized such that will realize sustainable health security in Nigeria, and beyond. It argues the role of justice in the attainment of public health security. The predominantly poor articulation of justice in medical practice and health policies on rationing health care in Nigeria is argued to be a fundamental implicit factor in social dislocation and unpatriotic discontentment towards the development of the Nigerian state. Through philosophical analysis and critical reflection, this paper examines the problem of public health security by asking: what are the ethical justifications of rationing healthcare? Who determines (and upon what criteria) who benefits in rationing of health care in Nigeria? What is the most rational and prudential means of ensuring equity, equality, fair distribution and accessibility to qualitative health care in Nigeria? By providing plausible answers to these questions through synchronized African and Western bioethical frameworks, this paper not only identifies the critical missing element of justice in health security discourse in Nigeria, but also recommends how the agenda of public health security can be pragmatically realized, sustained and be revealing for other societies.
The Ethical Implications of Global Health Practicums in Nursing
Madeleine Greig, RN; Barbara Pesut, PhD RN
Objective: Increasingly, undergraduate nursing students are electing to participate in global health practicums (GHPs). However, empirical and theoretical nursing literature that is dedicated to exploring the ethical implications of GHPs in nursing is surprisingly nascent. In particular, little ethical reflection has been conducted on the ethical, or moral, uncertainty that nursing students experience during GHPs. Therefore, the purpose of this study was to gain a better understanding of the ethical implications of GHPs in nursing through an investigation of the moral uncertainty undergraduate nursing students experience during GHPs. Research Design: In this Interpretive Descriptive study, semi-structured interviews were conducted with 17 graduates of a Canadian undergraduate nursing program who participated in a GHP in their final semester of nursing school. Participants ranged in ages from 25 to 31 years, with eight of the 17 participants indicating that they had travelled to, or worked in, the global South prior to participating in the GHP. The mean length of interviews was 62 minutes. Constant comparative analysis of the data was undertaken to produce a thematic account of the moral uncertainty undergraduate nursing students experience during GHPs. Results: Expressions of moral uncertainty were evident throughout all 17 interviews. In accordance with the Interpretive Descriptive approach undertaken, three main themes typifying the data were constructed. In the first theme, Heightened Reality, experiencing the ‘exotic’ nature of working in a foreign environment was a source of considerable moral uncertainty for GHP participants. Moral uncertainty was born out of participants’ grappling with issues related to practicing outside one’s scope of practice, and when confronted with questions of power and privilege. In the second theme, Cultural Collisions, expressions of moral uncertainty resulted from the disjuncture between participants’ values, beliefs, and assumptions, and the new cultural and clinical care environments within which participants found themselves. Lastly, for many participants, cultivating and experiencing a profound sense of Connectedness – a sense of belonging – exemplified what the objective of the GHP ought to be. However, when the profundity of connected and collaborative relationships was not experienced by participants, feelings of moral uncertainty, and subsequent frustration, arose. Discussion: Our data indicate that students from one university in Canada experienced a considerable amount of moral uncertainty during their GHP experience. Underlying much of the moral uncertainty was a misalignment between what participants expected their global health experience to entail, and what was experienced in reality. Participants reflected deeply on these disparities, evidencing the development of a critical consciousness, however, for many, the moral uncertainty remained unresolved. Clarity in the role, needs, expectations, and purpose of GHPs in nursing need to be revisited.
Is the Migration of Health Professionals from Lower-income to Higher-income Countries Unjust?
Health professionals are migrating, in increasing numbers, from lower-income countries such as South Africa, Ghana, Zimbabwe, Nigeria and Ghana to higher-income countries such as Canada, USA, New Zealand, UK and Australia. Since the lower-income countries tend to be underserved by health professionals, some scholars claim that the migration is unjust, especially if the high-income countries actively recruit health professionals in the lower-income countries. For example, in “The Ethics of Medical Practitioner Migration From Low-Resourced Countries to the Developed World” (Bioethical Inquiry, 2016) Charles Mpofu, Tarun Sen Gupta and Richard Hays contend that high-income countries have a moral obligation, based on global justice, to reduce the drain of health professionals from low- and middle-income countries and to compensate these countries for past losses. They also contend that while health professionals have the right to migrate, those who contemplate moving from a low- or middle-income country to a high-income country should consider whether the benefits they have received from their homeland, including a subsidized education, morally obligates them to remain and to help improve the standards of health care. Mpofu, Sen Gupta and Hays base their reasoning on two approaches to justice, one by John Rawls and the other by Immanuel Kant. In my presentation I will evaluate their reasoning in the light of recent research and argue that the reasoning fails to establish the authors’ conclusions. I will also show that the legitimate concerns of the authors can be dealt with in ways that better respect the rights of health professionals.
1B: Pharmaceutical Ethics / Resource Allocation (3 x 30 mins.) Show Details
Pharmaceutical Ethics / Resource Allocation (3 x 30 mins.)
Pharmaceutical Marketing Ethics: Fostering an Effective Balance Between Social and Commercial Imperatives
It is widely accepted that patients should be provided with balanced and credible information so that they can make informed decisions about how best to manage their health. However, the sources are not always reliable and the search for balanced, impartial and comprehensible information can be particularly difficult. With a wealth of marketing experience and significant financial resources (far in excess of national regulators), the pharmaceutical industry is one of the major players in direct-to-consumer communications (DTCC). However, pharmaceutical marketing is often seen as a vehicle for transmitting biased information to increase drug consumption, to the extent that in recent years there have been many calls for more government regulation and for industry to better self-regulate its practices. Although DTCC are generally presented in an accessible and comprehensible way, pharmaceutical company practices raise (and are influenced by) a significant tension between two conflicting imperatives: 1) social expectations for information and consumer empowerment; and 2) commercial expectations that marketing stimulate the sale of drugs and serve as a reference for evaluating the practice of pharmaceutical marketers. These two imperatives simultaneously justify pharmaceutical practices, each with different stakeholders: the first for regulators and patient advocates, and the second for industry stakeholders and shareholders. Without these two imperatives, the promotion of medicines would simply not happen: the practices would not have social, and regulatory legitimacy if they did not possess informational qualities and the industry would not invest time, money and energy if there were no financial gains. This presentation analyses the major ethical issues raised by direct-to-consumer communications (DTCC) of health products (specifically pharmaceutical drugs), with a view to proposing ethical standards of practice for the marketing profession. A case-based analysis of four types of marketing practices is used to highlight the main ethical dimensions of DTCC. The ethical implications are then unpacked using the specific lenses of prominent ethical theories (consequentialism, deontology, virtue ethics, social contract), so that non-experts in ethics – i.e., marketing professionals – can understand the implications for their daily practice. Despite the lack of consensus about the moral foundations of a marketing ethics or the ethical frameworks that should guide pharmaceutical marketers, it is nonetheless possible to analyse the ethics of marketing practice from different theoretical perspectives and so draw conclusions about acceptable and unacceptable behaviour. To synthesize the essential ethical imperatives related to DTCC, an ethical engagement for marketing professionals is also offered as a guide to ethical conduct. This application of prominent ethical theories to a case-based analysis of pharmaceutical marketing helps to ground the complex ethical dimensions of DTCC as well as offer possible solutions to support better ethical practices by marketing professionals. Bioethics may have a direct role in supporting and equipping pharmaceutical marketers with ethical standards for their day-to-day practice, that enable them to balance competing imperatives to ensure that business operations are in line with the ethical expectations for corporate-driven communications about pharmaceutical drugs.
Justice in allocating artificial pancreases to people with type 1 diabetes
Ariane Quintal, Virginie Messier, Rémi Rabasa-Lhoret, Eric Racine
Background: Type 1 diabetes (T1D) management is highly demanding: patients need to monitor their blood glucose (glycemia) and inject themselves with appropriate amounts of insulin. An artificial pancreas (AP) is being developed to automate T1D management and alleviate its associated behavioral, mental, and emotional burdens (i.e. constantly thinking about glycemia regulation and fearing complications). This wearable medical device combines a continuous glucose sensor (measures glycemia every five minutes), an insulin pump (infuses insulin continuously), and a specialized software that tailors the insulin dose to the patient’s glycemia. The AP improves glycemic control compared to conventional strategies, allowing for psychosocial benefits (e.g., improved daily functioning and sleep, reduced stress). Access to the AP will likely be limited due to its costs. Public coverage intends to enhance accessibility to expensive medical interventions but conversely, it may be rationed to a number of patients to limit costs. Quebec’s Insulin Pump Access program illustrates well this paradox by restricting accessibility to the insulin pump to youth starting it before the age of 18. Hence, we project that at best, the AP would benefit from a public coverage program (PCP) with restricted criteria. Objective: This talk will explore the challenges associated with establishing patient selection criteria for an AP PCP with limited eligibility, and their implications for patients, family members, healthcare providers and policymakers. More precisely, we will reflect on tentative patient selection criteria and the concerns they raise regarding some facets of justice, notably accessibility, equity, and fairness. Methods: Initially, we conducted a critical review of the AP literature to identify justice issues raised by the AP. Then, we did semi-structured interviews with over 15 people with T1D to gather their impressions on these issues. Participants’ responses were subsequently analyzed with a qualitative thematic content analysis approach. Findings: A PCP with limited eligibility for the AP would be attractive to policymakers if it reduces total spending in T1D care. Patients hope for a PCP on the basis of restorative justice. Establishing selection criteria, such as clinical success, compliance, presence of complications, and clinical needs, raises justice issues according to the literature and to the patients consulted. First, selection based on predicted clinical success excludes patients with poor glycemic control despite rigorous self-care. Second, compliance to current treatment fails to predict future AP use, especially because the AP could lift some of the barriers to compliance. Third, the AP’s ability to prevent the onset or worsening of complications (i.e., primary and secondary prevention) involves clinical benefits for youth and older patients. Fourth, it may be challenging to establish whether patients with targeted clinical needs (e.g., pregnancy) should be prioritized in AP allocation. Conclusion: A PCP for the AP with limited eligibility could prioritize patients with poor glycemic control despite rigorous self-care and those with precise clinical needs (i.e., pregnancy, recurrent severe hypoglycemia). We also believe that public coverage of the AP should be extended if its long-term use is shown to be cost-effective.
Fair Pharmaceutical Pricing: What is it?
As the pharmaceutical landscape shifts to the development of expensive, specialized drugs and biologics, high pharmaceutical costs are causing global concern and are prompting discussions concerning what constitutes “fair pricing” of pharmaceutical products. The World Health Organization (WHO) organized the Fair Pricing Forum in May 2017 to explore this issue. The WHO has subsequently defined a “fair price” for medicines as one that “is affordable for health systems and patients and that at the same time provides sufficient market incentive for industry to invest in innovation and the production of medicines.” I examine recent discussions concerning fair pharmaceutical pricing, including from the WHO Fair Pricing Forum, to develop a taxonomy of various understandings of “fairness” that are under consideration. I proceed to evaluate their relative merits and I contend that fairness is under-specified in discussions of fair pricing. Looking to more foundational accounts of justice, among other ethical principles, will be necessary to move discussions concerning fair pricing towards more actionable measures, including drawing attention to broader, systems-level reforms that are necessary to support fair pharmaceutical pricing.
1C: Clinical Ethics (3 x 30 mins.) Show Details
Clinical Ethics (3 x 30 mins.)
Telling the Truth about Pain:
Healthcare providers and researchers are often called upon to provide anticipatory guidance regarding how much a procedure is going to hurt. Pain is a complex phenomenon with distinct features: there are sensory and discriminative aspects of pain, affective and motivational elements of pain, and cognitive facets of pain. Although each of these elements is realized by distinct brain pathways, pain arises from the activation and interaction of multiple brain mechanisms. Emotions, such as anxiety, can impact the felt intensity of pain, as can cognitive processes, such as expectation, attention, and learning. The cognitive effects on pain have been well-documented, giving rise to a consensus that cognition can change the perceptual processing of pain . When an individual is distracted away from a painful experience, the activation in the sensory and discriminative areas of the pain system is decreased , lowering the felt intensity of pain. Just as distraction can diminish pain, attending to it can increase the intensity of pain. Expectation has also been shown to change how pain is experienced. The application of a low intensity nociceptive stimulus, coupled with a warning to expect a high intensity stimulus, produces the experience of high intensity pain. Similarly, expectation of a low intensity stimulus paired with the application of a high intensity stimulus results in a less painful experience . Expectation can also influence the effectiveness of proven analgesics. Positive treatment expectations have been shown to double the analgesic effects of a drug, while negative treatment expectations, diminished the pain relieving effects . In addition, the perceived threat of the painful stimulus can affect the intensity of pain and the individual’s assessment of his or her abilities to cope with the threatening stimulus . Finally there is also evidence that personality traits such as neuroticism or extroversion impact the ability to cope with pain. . Based on the evidence reviewed, we can conclude that warning people to expect pain will not only impact their subjective experience of pain but will also change how nociceptive stimuli are processed throughout the sensory and discriminative pathways in the brain. Hence, whether a certain procedure will hurt, or how much it will hurt, depends in part on the expectations created by healthcare providers. This introduces a conflict between the obligation to tell the truth and the obligation to minimize harm. I propose that the solution to this conflict depends on a number of different factors. One of the factors is the likelihood that the particular intervention will cause pain, with higher probabilities enhancing the obligation to tell the truth. Another factor is to what extent an individual could reasonably use the information to refuse the intervention, i.e., whether the disclosure will make a difference to the clinical care or research plan. Finally, where possible, decisions about disclosure should be patient-centered and take into account an individual’s personality and their coping style, which is especially important in light of the evidence that the ability to cope with a threatening stimulus affects pain intensity.  Wiech, K, Ploner, M., & Tracey, I. (2008). Neurocognitive aspects of pain perception. Trends in Cognitive Science, 12(8): 306-313.  Bingel, U., et al. (2011). The Effect of Treatment Expectation on Drug Efficacy: Imaging the Analgesic Benefit of the Opioid Remifentanil. Science Translational Medicine, 3(70): 70RA14.  Harkins, S. W., Price, D.D., & Braith, J. (1989). Effects of extraversion and neuroticism on experimental pain, clinical pain, and illness behavior. Pain, 36(2): 209-218.
Comparing PrEP for HIV Prevention Among MSM and the Birth Control Pill: Sex, Power and Social Justice
In this paper, I explore the ethics of using pre-exposure prophylaxis (PrEP) as HIV prevention for men who have sex with men (MSM) by comparing it to the use of the birth control pill among women. The history of the birth control pill demonstrates how new medical technologies can really affect the social lives of people who use them. Although the medical concerns about the ethics of new medical technologies like PrEP may take precedence over the social concerns, there is a strong focus in literature on these medical concerns. I focus on the often overlooked social dimension of the ethics of PrEP and I investigate how PrEP affects the social lives of MSM, especially as it becomes more widely available in Canada. I argue that PrEP increases access to the social goods of sexual relationships, romantic relationships and sexual freedom for MSM in general. However, there are many social objections to the use of PrEP by MSM that argue that PrEP actually increases risky sexual behaviour. I find that it is helpful to compare PrEP to the birth control pill in order to respond to such objections because similar arguments were levelled against the birth control pill in the past. Both PrEP and the birth control pill help prevent unwanted outcomes of sex; PrEP helps prevent HIV infection and the birth control pill helps prevent pregnancy. Empirical evidence demonstrates that the use of the birth control pill by women does not reliably increase their risky sexual behaviour. Therefore, I argue that PrEP does not increase risky sexual behaviour either. The birth control pill has increased sexual activity, the number of sexual partners and the risk of STIs, pregnancy and abortions for women. Nevertheless, increased sexual behaviour is not regarded as a reason to prohibit women’s access to the birth control pill. In fact, the birth control pill actually helps empower women by allowing them to take control of their sexuality and their sexual health. PrEP similarly empowers gay men, bisexual men and other MSM because it increases their control over their sexuality and their sexual health, which increases their sexual freedom in general. Although the birth control pill and PrEP are usually studied in different populations, the success of the birth control pill for women suggests that reducing the risk of unwanted outcomes of sex does not necessarily lead to increased risky sexual behaviour. This comparison is important for issues of social justice in the health care of MSM. MSM, as a social group, have specific health care challenges and opportunities because of the approval of PrEP for HIV prevention in Canada in 2016. The comparison between PrEP and the birth control pill also raises difficult questions about access to health care, responsibility, power, relationship dynamics, social acceptance and mental health. Although the birth control pill is not perfect, it is important to learn lessons from the experience of women using the birth control pill in order to optimize the use of PrEP for HIV prevention among MSM.
How Effective Are We Really?: Evaluating a provincial clinical ethics service
Amanda Porter, Katherine Duthie, Victoria Seavilleklein, Al-Noor Nenshi Nathoo
Overview - Evaluating ethics consultation, as well as clinical ethics services more broadly, has been a challenge for the field of clinical ethics. Yet, ongoing professionalization, together with the need to demonstrate accountability within a health care organization, compels us to assess the effectiveness of our work. This presentation will describe the evaluation project conducted by the provincial Clinical Ethics Service in Alberta Health Services (AHS) from May 1 to December 31, 2017 and convey its findings. The Goal – A central purpose of the AHS Clinical Ethics Service is to support ethically sound practice across the organization by providing the following services: clinical ethics consultation, developing and facilitating ethics education, participating in the development and review of governing documents, and integrating into a wide-range of committees and working groups across AHS that are tasked with ethically complex decision-making. In 2016, AHS administration requested that the Clinical Ethics Service evaluate these core activities, with emphasis on consultation, education, and policy review. The project sought to address the following questions: • To what extent are AHS staff, patients and family members aware of the services offered by the Clinical Ethics Service? • To what extent are the services provided by the Clinical Ethics Service supporting AHS staff, patients and families in identifying and understanding clinical ethics issues? • To what extent are the services provided by the Clinical Ethics Service supporting AHS staff, patients and families in managing and resolving clinical ethics issues? The Challenge - Clinical ethics work cannot readily be measured according to participant satisfaction, since ethics work done well may create delays, uncertainty, or discomfort. Good clinical ethics work can improve relationships among stakeholders and reduce moral distress. These outcomes are real, but difficult to quantify. Ideally, good clinical ethics work not only resolves conflict, but prevents it from worsening or sometimes prevents it altogether; this preventive value of clinical ethics is similarly difficult to measure. The Method - There are at least two broad approaches to evaluating a program with multiple components or services. One is the program approach which takes the program as a whole and measures the outcomes or impacts of interest. Another approach - the portfolio approach - gathers evidence relating to various pieces of a program or service to demonstrate differing types of impact. Our evaluation project used a hybrid of these two approaches. We evaluated each of the Clinical Ethics Service’s core services (three types of ethics consultation, education, and policy review) and surveyed managers across the organization to measure the general awareness and understanding of the Clinical Ethics Service. This Presentation – We will describe the evaluation process used in AHS, share the survey tools, and disclose the end results. We will also discuss some of the challenges we faced during the implementation stages and how these were resolved. Finally, we will share some observations about how the evaluation and the results it generated have affected our role and status in the organization.
1D: Disability Ethics (3 x 30 mins.) Show Details
Disability Ethics (3 x 30 mins.)
‘Just access’? Questions of equity in access and funding for assistive technology
Evelyne Durocher, Rosalie H. Wang
Background: Technological innovation in assistive technologies geared toward improving health and quality of life can promote function and participation; consequently, uses for assistive technology in health and social care are multiplying. To date, globally, access to assistive technology is variable, and legislation, policies and programs have not kept up with the increasing demand for and use of assistive technology. Across Canada, many programs provide funding and services for assistive technology devices; these programs are offered by federal, provincial or territorial governments, private and public insurance groups, as well as charity organizations. Funding and the eligibility criteria vary greatly from program to program. The result is a complex web of programs offering a patchwork of devices and services, which sets up situations of inequitable access to assistive technology. From a user perspective, navigating the different programs to access needed assistive technology can be challenging, confusing, time-consuming and at times, in vain. Purpose and Methods: In this paper we 1) apply Daniels’ theory of Just Health (2008) to assistive technology to build a theoretical argument for why assistive technology should be included in health and social care, and then we 2) discuss how elements of methods for health technology assessment and Daniels’ theory of accountability for reasonableness can provide guidance in the development of legislation, policies and programs governing equitable access to assistive technology in health and social services. Discussion: We discuss three of Daniels’ conceptualizations that are particularly relevant to an application to assistive technology: 1) health as ‘normal species functioning’; 2) one’s ‘normal range of opportunity’; and 3) justice as fair opportunity, before discussing how justice requires the protection of health. We furthermore consider three arguments for why the application of Daniels’ theory is appropriate for consideration of questions of equity in relation to access to assistive technologies. 1) Assistive technology has the potential to contribute to meeting health needs as well as to promote functioning, and thereby contributes to health. 2) Assistive technology has the potential to contribute to increasing quality of life. 3) Assistive technology can be considered akin to the social determinants of health in that assistive technology can contribute to health, and access to assistive technology is socially determined. Conclusion: An application of Daniels’ (2008) theory of Just Health suggests that justice in health requires equitable access to assistive technology. This aligns with the mandate set by the World Health Organization that equity in access to assistive technology should be promoted. Equity does not mean providing all equipment to everyone, an impossible goal in any bounded system such as a healthcare system. Rather, equity in access to assistive technology can be achieved through the judicious distribution of resources related to assistive technology as a part of health and social services in order to meet intended health and participation aims. Applying Daniels’ (2008) conditions for accountability for reasonableness to the context of Canada could provide guidance in refining the existing system.
The Health Justice Approach and Models of Disability
Norman Daniels’s renowned theory of justice for health considers the importance of providing a fair distribution of health care services within a just society. Daniels’s account is frequently referenced when it comes to questions and considerations of “just health”. I will refer to Daniels’s theory as the “health justice approach” throughout this paper. One potential concern with the health justice approach is that it has the potential to reinforce the medical model of disability in order for people to access justice. The medical model of disability is the idea that persons with impairments can be better included in society by fixing their impairments, specifically since their impairments are viewed as the problem. There exist some challenges with this model, such that it ignores the identity-constituting elements that having an impairment may contain. This is an important challenge to consider given the prevalence of Daniels’s account and the significance of enabling vulnerable and frequently marginalized populations to access justice. In order to advance this potential consequence of Daniels’s account, I will first describe the health justice approach to health care services. Second, I will consider how the health justice approach has the potential to reinforce the medical model of disability. Third, I will present my primary concern with the health justice approach, specifically, that it may at times fail to consider the identity-constituting elements of having an impairment. Fourth, I will show that in order for the health justice approach respond to this potential criticism, it needs to incorporate the social model of disability. Although Daniels does not discuss the social model of disability in his health justice approach, he does not explicitly reject it. Thus, the final step of this paper is to present two modified versions of the health justice approach. Both of these modifications aim to explicitly incorporate the social model of disability.
Disability, Illness, and the Harm of Dismissed Testimony
When someone makes a claim about their health, does their testimony alone count as evidence that we should believe their statement? This and similar questions are host to a significant debate in philosophy, as testimony is an integral part of how humans interact day-to-day. If someone who appears physically healthy makes the claim that they require assistance, how should we react? This paper considers two possible issues we might face if we are to dismiss the testimony of people who do not immediately appear to be differently-abled. The first issue is whether we lose social knowledge in our rejection of their testimony. Relevant pieces of knowledge we might lose include whether a building really is accessible, whether some systemic injustice is creating difficulties for some members of our communities, and whether this individual is being adequately treated by our current healthcare system (or if they are slipping through some bureaucratic inefficiencies). The second question is whether we are treating individuals with the respect and autonomy they deserve when we reject their testimony about their own health. In this paper I explore some philosophical takes on testimony and link these to the philosophy of disability and bioethics. Specifically, I focus on non-visible and/or less-visible disability and illness (up to, and including, mental illness and chronic pain). Often these less-visible or non-visible disabilities and illnesses cannot be directly understood without relying on some form of patient testimony (e.g. through pain scales). As such, how we conceptualise testimony will play a central role in how we, perhaps implicitly, judge individuals in (and out) of a healthcare setting. The first section of this paper is dedicated to understanding just how testimony is related to knowledge, with a specific focus on the medical knowledge that comes about through interactions between two individuals, where one has some non-visible or less-visible health condition(s). This relies heavily on embodied knowledge, and how we might transmit these feelings, sensations, and pieces of personal knowledge between individuals. Following this, the second section outlines two cases: the first regarding disability and the second regarding mental illness. In both, I discuss the dangers of dismissed testimony, and how this can happen in healthcare settings as well as everyday settings. In my final section, I give an imperative to the audience regarding how we ought to restructure our conceptions of testimony. More specifically, I discuss how we ought to be more trusting when an individual testifies about their health. In so doing, we might act in more just manners towards those with non-visible or less-visible disabilities or illnesses.
1E: Public Health (2 x 30 mins.) Show Details
Public Health (2 x 30 mins.)
JUST PUBLIC HEALTH: A policy proposal for balancing the rights of the community and the rights of patients with a virulent communicable disease
David Langlois, Sean Hillman, Michael Szego
Provincial public health legislation is intended to mitigate the threat posed by virulent communicable diseases (VCD) such as infectious tuberculosis. These laws are supposed to protect individuals’ liberty rights while enabling medical officers of health (MOH) to mandate the treatment of disease-carrying persons when necessary. However, in some Canadian provinces, the current legislative framework fails on both counts: it offers insufficient public health protections while doing too little to safeguard the rights of vulnerable patients. Using Ontario as our central example, our project aims to illuminate and address the moral and practical deficiencies of the current legal framework. In Ontario, if a person with a VCD—whether an inpatient in a hospital or an individual in the community—refuses to be treated, s.22 of the Health Protection and Promotion Act (HPPA) allows an MOH to write an order requiring the person to receive treatment. In general, s.22 orders succeed at convincing individuals with a VCD to accept treatment. However, s.22 does not permit healthcare providers to hold or treat a patient against her will. In cases where a person does not comply with a s.22 order, an MOH may apply to the Ontario Court of Justice, under s.35, for a court order requiring the person to be confined, examined, detained, and treated. The HPPA’s two-step system is meant to ensure significant oversight of a process that could result in VCD-carrying persons being held against their will. Given that many persons carrying a VCD are socially and economically vulnerable, this level of caution is warranted. In practice, however, there are two serious and intertwined problems with the HPPA. First, the dependence on the Court means that it may take days or weeks to begin holding and treating a person, particularly in administratively busy regions. During this period, the person’s ongoing presence in the community may pose a significant health risk to others. And this risk is likely to disproportionately affect other similarly vulnerable persons (e.g., in shared housing). Second, while (and perhaps because) persons cannot be held under the HPPA without judicial approval, individuals with a VCD may instead be held on other grounds. For instance, clinicians may ‘buy themselves time’ by holding patients under the Mental Health Act (Form 1), potentially without proper justification. While this misuse of the Mental Health Act may come from good intentions, it constitutes a clear form of procedural injustice. Our presentation will explore and analyze the moral and practical inadequacies of the current system and endorse a revised legal framework. Our revised framework could decrease the amount of time required to confine and begin treating a person carrying a VCD, while providing robust safeguards and options for appeal. This approach would allow clinicians and MOHs to more reliably protect their communities, while treating VCD-carrying persons with fairness and respect. Although Ontario-focused, our presentation will draw on and provide lessons applicable to other provinces. Finally, we will offer a draft institutional policy for dealing with crisis cases in the absence of a legislative solution.
Exclusion and healthism in population health nudging practices
The past decade has seen significant traction and attention to the possible roles of “nudging” in population health. “Nudges” are small, often imperceptible changes to choice architectures that are meant to exert influence on people’s choices without forebearing the ability to choose otherwise. The concern has been whether and how to use nudges to promote valued health practices in population health. For example, some have suggested putting “healthier” food options like fresh fruit at eye-level in cafeteria to more incline people toward choosing them, as with reducing visibility of sugary foods in store checkouts. Similarly, campaigns and signage to “just use the stairs” adorn elevators and escalators with images and statistics meant to indicate health outcomes—with recent buildings even designing floorplans that centre staircases while placing elevators at a distance—are intended to encourage more regular use of stairs. The recent requirement to display calories counts in fast-food menu boards in Ontario are meant to encourage reduced caloric intake. In this presentation, I argue that many of these population health nudging practices contribute to healthism and exclusion by perpetuating individualistic norms. Coined in 1980, “healthism” is characterized by an emphasis on maximizing health benefits and minimizing health risks through individual behaviors and involves the assignment of value-based judgments to health-related activities. Recent research and activism around healthism—and particularly around weight and size stigma in health delivery—have drawn attention to how framing and moralizing health in terms of individual choices and behaviours relies on able- and thin-normative ideals of a “normate” body. This focus obscures the ways in which our normative conceptions of a universal “body” excludes disabled people, elderly people, fat people, among others, and how individual choices may be constrained by sociomaterial circumstances. “Take-the-stair” initiatives and built environments ignore those who are disabled, size-diverse, or elderly; “healthy eating” and “calorie count” initiatives often ignore differences in socioeconomic access to food types, as well as impacts on those with eating disorders and different relationships with food access and security. Accordingly, in this presentation I draw on health research, narratives, and activism in order to argue that just health nudging practices must explicitly attend to individual and sociomaterial differences that arise in populations, including relational and sociomaterial constraints on choices. More just and inclusive population health nudging practices must be grounded in initiatives that seek to improve access and disrupt inequalities and stigmas that may be otherwise perpetuated by population health nudging practices.
1F: Research Ethics (3 x 30 mins.) Show Details
Research Ethics (3 x 30 mins.)
Modest Incentives for Research: Avoiding Undue Influence while Attracting Appropriate Research Participants.
Ugie Ifesi, Masters of Health of Sciences, Bioethics (University of Toronto); Dianne Godkin, Ph.D. Senior Ethicist (Trillium Health Partners)
The objectives of this paper are to: 1) demonstrate the lack of consistency in the approval of incentives across Research Ethics Boards (REBs) in Ontario including the dangers of such disparity; and 2) propose an ethical framework for assessing incentives in research. Introduction – Many ethicists consider incentives in research to be unethical because they influence, or could influence, the voluntariness of participant consent (McGee, 1997). Halpern and colleagues (2004) conclude that higher financial incentives motivated and encouraged participants to participate; however, the researchers did not find that these payments induced or improperly influenced the participants. Are certain incentives coercive? REBs are progressively asking this question, and are responding affirmatively without proper empirical evidence (Singer & Couper, 2008). Tri Council Policy Statement (2014) requires that REBs take adequate steps to safeguard participants from harm. It is not ethical to replace incentives for these safeguards, just as it is not ethical to replace informed consent for participants (Singer & Couper, 2008). Some ethicists propose that offering little incentives would lead to exploitation of participants in low socio economic status (Resnik, 2015). While some ethicists propose that offering minimal or no incentives could create a distributive justice issue—biased enrolment, as participants from low socio-economic backgrounds may be unable to participate, therefore skewing the participant pool to a more financially well-off demographic (Halpern et al., 2004; Resnik, 2015). Conversely, large incentives could encourage a disproportionate number of participants from low socio-economic background to participate. To address the issues identified and reduce unjust practices, there is an immediate need for the development of a framework pertaining to incentives for research participants (Resnik, 2015). Methods – To explore the concept of modest incentives, two focus group discussions with a diverse sample of ethicists from across Southwestern Ontario were conducted. In addition, individual interviews were carried out with seven other ethicists selected from various hospitals in the Greater Toronto Area. A review and assessment of current practices across nine hospitals in the Greater Toronto Area were undertaken to better understand how REBs approve incentives. The focus groups considered various models of incentives including a market model, a wage-payment model, a reimbursement model, and an appreciation model (Dikert & Grady 1999; Grady, 2005). Results – The analysis demonstrated diverse values within hospitals and among ethicists in their consideration of what constitutes a modest incentive. The most prevalent theme was the importance of ensuring voluntariness of consent in decision-making of research participants. Other considerations raised by the ethicists were fairness, removal of barriers, need for participant-centeredness, capacity, strength of justification, social economic status, age, time, task, custom, cost burden of research, population, risks, direct and societal benefits. There was no consensus in the appropriate model of incentives to use. Although, the ethicists emphasized the need for consistency and fairness in decision-making. Conclusion – A framework to guide REBs in the assessment of incentives is proposed. This framework seeks to achieve greater consistency and fairness in decision-making, and a more just approach to the evaluation and use of incentives in research.
Researchers as Allies: Shifting our Research Process through a First Nations Peoples Heart Health Study
Moneca Sinclaire, Dr. Elizabeth McGibbon, Dr. Annette Schultz,
As non-First Nation (FN) researchers our experience with FN Peoples has highlighted how important and challenging meaningful research partnerships are to build and maintain. Their unique histories, cultures, and traditions are not always known or understood by non-FN people. A robust research team that included experts in the field of social justice, history, racism and colonialism was essential; however, strong FN community and Elder involvement was imperative to broaden our understanding of the current reality surrounding FN people and heart health. In Canada, rates of coronary artery disease (CAD) reveal a growing disparity and an increasing incidence of CAD among FN populations. The predominant narrative for this disparity focuses on individual risk factors, with minimal attention to systemic heart health contexts. Filling this gap is crucial to inform strategies to alleviate health inequity and CAD burden. In this presentation we share the benefits and challenges we have experienced, some of our findings, and how partnering with FN community and Elders has shaped this study. Foremost was the understanding that relationship was central in research partnerships with FN people. We secured a meetings grant to support engagement of FN stakeholders. This presented the opportunity to listen and hear how Manitoban FN people think about the current healthcare system, their concerns regarding heart health of family and friends, and their previous experiences with research. Although it was clear that we needed to “give voice and space” for FN knowledge, beliefs, and experiences, we also needed to engage heart health practitioners within the healthcare system. Both of these sources of knowledge, beliefs, and experiences are necessary to tackle issues of power, oppression, and racism that influence health systems and healthcare decisions on a daily basis. Adopting a Two Eyed Seeing approach supported our study to explore heart health among FN people through multiple worldviews, where one view does not dominate the other. Our mixed methods study started with three components. Shifts in research process and outcomes generated evolved through ongoing discussions with Elders and the research team. Two examples are: (1) in order to address health care access, it was necessary to extend our retrospective population-based investigation of index coronary angiograms among FN and non-FN patients in Manitoba to a more robust examination of index angiogram utilization among each population; (2) qualitative interviews with FN cardiac patients evolved into a documentary film that is collaboratively created with Elders discussing heart health, and FN people with heart conditions. Willingness among settler allies to learn and be led by FN members was a critical shift in our research approach. Accepting the importance of both worldviews moved this research forward, along with remembering that allies reside within the dominant worldview. We were ever challenged to be more aware, conscious, respectful and mindful of our own biases and privileges as our eyes were opened to research that truly addressed inequities within our healthcare system. Advancing our understanding of systemic influences on heart health among FN people is imperative to shift the narrative and health among FN populations.
Draft Ethics Guidance for Developing Research Partnerships with Patients: Public Consultation
Genevieve Dubois-Flynn, Ethics Office, CIHR; Nicolas Fernandez, Faculty of Medicine, Université de Montréal
Directly linked to themes of social justice and procedural justice in the realm of health research, active and meaningful patient engagement in research – from priority setting to knowledge translation-- is becoming internationally more common. The health research community and patients (and their families and caregivers) are become increasingly aware of the value of collaborating on research that is intended to benefit patients. In support of the national Strategy for Patient-Oriented Research (SPOR), the Canadian Institutes of Health Research (CIHR) Working Group on Patient Engagement and Ethics is consulting on draft ethics guidance on patient engagement. Working Group membership includes approximately equal numbers of patients and experts in research and ethics. Working Group co-chairs are the Manager of the CIHR Ethics Office and a community member on the CIHR Standing Committee on Ethics. The guidance document is framed around the roles that patients may undertake when engaged in research across the research lifecycle as a shared responsibility among patients, researchers, institutions and funders. The guidance aims to: • Build on the Tri-Council Policy Statement: Ethical Conduct of Research Involving Humans 2nd edition (TCPS 2) and the SPOR Patient Engagement Framework; • Be relevant to health research involving humans, particularly in Canada; • Build capacity for ethically sound and meaningful patient engagement among patients, researchers, institutions and funders; and • Be grounded in real life situations and experience. The session will raise awareness of the draft guidance, stimulate discussion, and encourage participants to provide more detailed feedback through the public consultation process. The session will begin with a brief overview of the draft guidance, and then focus on cross-cutting ethical concerns of: legitimation and representation; management of conflicts of interest; power dynamics and imbalances; benefits and harms; and confidentiality. The draft guidance provides key points of reflections under each cross-cutting issue. Examples of how these reflections apply in specific roles will be highlighted to help ground the discussion in applied settings.
1G: Identity and Self-Worth (2 x 45 mins.) Show Details
Identity and Self-Worth (2 x 45 mins.)
Identity and the Ethics of Eating Interventions
It may be a well-worn cliché that “you are what you eat,” but identity does not figure prominently in many debates about the ethics of eating interventions. These debates are often framed as a clash between respect for autonomy and the effective promotion of healthy eating. Promoting healthier eating is, it is assumed, both good and necessary, but autonomous eating is highly valuable, and should not be unduly restricted. Unfortunately, when left to their own devices, many people do not eat healthily. Within this framing, the central bioethical question is: when can we justifiably impinge on autonomy to effectively promote healthy eating? If identity is of any ethical relevance, it is as a factor influencing our food choices, habits, and preferences, and little more. But identity is of greater ethical significance to eating than this, and ignoring this fact can lead public health practitioners to harm those they are trying to help. Or, so I will argue in this paper. I begin with an account of the relationship between eating and identity. One way we construct identities is by holding ourselves and others to “identity-congruent” actions, including ways of eating. When people fail to eat in identity-congruent ways, they are subject to “identity policing,” forms of disapprobation and punishment that motivate compliance with identity norms. For example, men who refuse to eat meat may be ridiculed, shamed, or socially excluded for violating the norm “real men eat meat.” I argue that such identity policing can cause emotional, social, psychological, and material harms. Eating interventions can subject people to these harms in at least two ways: 1) through the deliberate invocation of identity policing as an intervention strategy; 2) or by encouraging people to eat in ways that will subject them to policing from others. I draw from social science and humanities research to suggest that healthy eating violates some gender, ethnic, race, and class identity norms. This means that practitioners who promote healthy eating may make their targets vulnerable to harmful identity policing, simply by pushing them to eat beyond the bounds of what others will hold them to. By using a strategy or promoting an intervention that might harm those affected by it, practitioners may violate the bioethical principle of non-maleficence. But non-maleficence is a prima facie principle; the harms of identity policing could be outweighed by the benefits of the eating intervention in question. What is essential is that these harms are acknowledged and given their due weight. To aid in this process, I discuss several factors that modulate the presence and extent of these harms. I conclude with practical guidelines for developing eating interventions that avoid or minimize harmful identity policing. By demonstrating the moral relevance of identity for eating, and offering tools to identify, mitigate, or avoid identity-related harms in the development of eating interventions, this paper contributes to less harmful, and more ethically comprehensive, public health food policy and practice.
Self-Worth and Autonomy: Reconceptualizing Autonomy and Respect for Autonomy in Severe Mental Illness
When a patient accepts and appreciates a diagnosis of mental illness, they are said to demonstrate ‘insight’ into their condition. While this demonstration of insight is usually presumed to be positive (it tends to correspond to better compliance with treatment), a number of studies have linked demonstration of insight to negative outcomes as well (hopelessness and low-self-esteem). The discrepancy in the results of these studies suggests a causal gap between insight and treatment outcome. Among others, Paul H. Lysaker and David Roe have suggested that the missing causal link is the meaning patients attach to accepting a diagnosis of mental illness, particularly whether or not they accept stigmatizing beliefs about mental illness. By way of building on this analysis, I suggest that exploring the role of self-worth in relation to insight is a productive place to start, both philosophically and practically. Relational accounts of autonomy have claimed that self-worth is a necessary condition for autonomous agency, and contended further that self-worth can be undermined or enhanced both by the agent herself, and by forces outside of her (personal relationships and social conditions, either of which can be oppressive or supportive). Persons with mental illness, particularly those who experience psychosis, are typically presumed to be non-autonomous. On the aforementioned account of autonomy, however, if a person with a mental illness can have a sense of self-worth, this gives us good reason to think they are either marginally autonomous, or that their autonomy could be built up. One practical implication of this philosophical analysis is that it carves out a space where care providers can work with patients to restore some sense of personal autonomy: a patient’s sense of self-worth. If we think that (a) the above conception of autonomy is right, and (b) autonomy is valuable (either instrumentally or intrinsically), then this could entail an obligation to both treat patients with mental illness as possessing capacities that either do or could support autonomy in some way, and to work with patients to restore those capacities as much as possible. I begin my presentation by briefly reviewing the data linking insight to both positive and negative treatment outcomes. I then define what I mean by both self-worth and autonomy, and outline why self-worth is necessary for autonomy. I then explain how persons can be marginally autonomous, and why this has practical implications for how we conceptualize autonomy in bioethics. I then suggest two ways care providers can respect patient autonomy in cases of mental illness: first, by working with patients to restore a sense of self-worth; second, by not treating patients merely as passive recipients of care, but rather as agents who can take an active role in their own treatment. How care providers can support and build up self-worth, and when patients ought to take an active role in their treatment plans are complex questions, the answers to which will necessarily be context sensitive. I conclude my presentation by offering several examples of what each of these could look like in practice.
1H: Healthcare Setting (2 x 45 mins.) Show Details
Healthcare Setting (2 x 45 mins.)
The ethics tensions arising from harm reduction in acute care settings
Harm Reduction is being adopted across the country as an important component in a broader strategy to address the “opioid crisis”. At Alberta Health Services we use the term in reference to “policies, programs and practices that aim to reduce harm associated with the use of substances. It is about preventing harm rather than complete abstinence, recognizing that stopping use may not be realistic or desirable for everyone.” To put it very simply, we treat people without insisting that they stop using. The ethics arguments most often used in support of harm reduction are utilitarian – the harms can be minimized (clean needles, supervised injection sites, pharmacy grade drugs) and the benefits maximized (life-threatening infections treated, therapeutic relationships established). There is less discussion of the deontological arguments relevant to harm reduction. Can the wishes of an addict ever really be informed and voluntary? Do we have a duty to address the underlying causes of the addiction? Are we violating our fiduciary duty to the patient by not interfering with what we know to be a dangerous activity? Is it fair to clinicians and other patients to dedicate space and resources to aid and abet an illegal activity? This paper will use cases from an acute care hospital in Canada involving IV Drug users with life-threatening illnesses to explore the ethics tensions inherent in harm reduction. After reviewing the standard utilitarian arguments in support of harm reduction, it will explore the deontological or duty-based arguments. It will then focus specifically on the concept of informed consent. This paper will argue that our understanding of the nature of addiction will affect our ethical analysis. If addiction is fundamentally physiological (the disease model), harm reduction is rather problematic. If addiction is seen as a psychosocial response to trauma and isolation, the arguments for harm reduction are more compelling. This is especially relevant when considering notions of informed consent. While the disease model of addiction can be used to certify and treat a patient against their will, a psychosocial model of addiction might imply that more effort should be put into winning the trust and consent of the patient. For example, we need to think very carefully about the kinds of information a traumatized person embedded in a culture of illicit drug use needs if they are to make informed, voluntary decisions. Given that all communication is rooted in background knowledge and assumptions, clinicians need to give more than scientifically accurate descriptions of sepsis, neuropathic pain, and organ failure. We need to engage at the level of shared norms and background commitments. This can be very difficult for two reasons: 1) many addicts have good reasons not to trust the system and 2) the supports available to people with addictions are usually fragmented, difficult to enter and are not generally available in acute care. The current imperative to develop harm reduction approaches in the treatment of IV drug users in acute care settings provides ethicists with a unique opportunity to enrich the meaning and practice of informed consent.
'Meaningful' child and family engagement in healthcare: From symbolic to consequential
Gail Teachman, Jennifer Johannesen
With shifting healthcare models that aim to put patients at the centre of integrated health systems, there have been increasing calls to elicit patient input through formal advisory roles. The term 'patient engagement' is used extensively throughout healthcare, and is tacitly regarded as a ‘good thing’ for all involved parties, but it is often poorly or inconsistently defined. There is also a lack of evidence to verify its efficacy and impact. Because of this, it can be difficult to pin down exactly what purpose patient engagement serves, who benefits, and the degree to which it empowers patients, or amplifies their voices. Since advisory roles are most often voluntary and can require significant investments on the part of the patient, it is important to consider the potential for some forms of patient engagement to contribute to inequities or misrepresentation. Advisory roles unfold in social spaces involving complex power relations that inevitably shape the nature and impact of patient involvement. As patients are instrumentalized on behalf of far more powerful institutions, it is crucial to explore the relative balance of what is being exchanged. What is at stake? To what extent is patient contribution consequential? What symbolic value does the institution accrue from the mere presence of patients in advisory roles? What does patient participation authorize or validate? Does patient engagement involve potential harms and injustices? These questions should be examined from multiple perspectives and at both the micro level of individual patient/institution and macro level of society and healthcare. In this presentation, we focus specifically on patient engagement as it relates to the involvement of parents and children as family or youth advisors. When parents or children take up these roles, particularly complex issues of representation and power are brought to the fore. To be clear, our aim in the presentation is to surface and examine ethical concerns that have received little attention to date. We are not suggesting that the project of patient engagement be abandoned. Rather, we consider motivations for pursuing patient engagement initiatives; analyze power dynamics in the context of parent or child/youth engagement; and consider the effects of instrumentalizing patient experience and narrative for institutional benefit. We will explore the role of ‘virtue signaling’ and the potential for advisory roles to be at once empowering and disempowering. We conclude the session by proposing strategies that begin to set out ‘terms of engagement’ for advisory roles that optimize potential benefits and are equitable, just, and responsive. By attending to the ethics of patient engagement, healthcare institutions can better ensure that child and family contributions are not just symbolic, but substantial and consequential.
|12:00 pm - 1:00 pm||
Paediatric Bioethics Network Group Meeting Show Details
Paediatric Bioethics Network Group Meeting
|12:30 pm - 1:30 pm||
CIHR Standing Committee on Ethics Presentation Show Details
CIHR Standing Committee on Ethics Presentation
|1:30 pm - 2:45 pm||
AMS Lectureship Series: Measured Care Responsibilities: Reconceptualizing Just Health Care Relationships Show Details
Professor of Political Science
University of Minnesota
AMS Lectureship Series: Measured Care Responsibilities: Reconceptualizing Just Health Care Relationships
Professor of Political Science
University of Minnesota
|2:45 pm - 3:00 pm||
Afternoon Refreshment Break
|3:00 pm - 5:00 pm||
2A: 60 min. Panel - Paediatric Ethics & Concurrent sessions (2 x 30 mins.) - Clinical Ethics Show Details
60 min. Panel - Paediatric Ethics & Concurrent sessions (2 x 30 mins.) - Clinical Ethics
Recognizing children as moral agents in healthcare: Clinical implications for child-focused professions
Marjorie Montreuil, Aline Bogossian, Gail Teachman
Children are often described in legal and bioethical literatures as morally incompetent and unable to participate in decisions affecting them (especially younger children or children with communication impairments). Broad recognition of their vulnerable status requires deliberate measures to protect their best interests. However, determinations of “best interests” have too often resulted in protections that exclude children from healthcare discussions and decisions that directly affect them. By recognizing children as both moral agents and in need of protection, care practices could be more inclusive of children. This type of normative shift has direct implications for how child healthcare is delivered. Current practice norms and daily care interactions have typically not been grounded in conceptions of children as agents capable of moral experience, who make sense of, construct, reflect and act upon what they perceive as right-wrong, good-bad, just-unjust in their social world. Practice changes are needed to ensure that children are supported to articulate their values, beliefs and preferences with regard to their care. In this panel, framed by a justice-oriented perspective, three child health researchers from diverse healthcare disciplines (nursing, occupational therapy, and social work) will share their views on the implications of considering children as moral agents and the influence this can have on how clinical care is offered and experienced by children and families. Each panellist has experience working with children identified as “doubly vulnerable” (i.e. being a child and having a disability or a mental health diagnosis). The theoretical, methodological and practical dimensions of the concept of children’s moral agency will be presented first, and then illustrated by specific examples from the three panellists. Dr. Teachman, an occupational therapist with clinical experience in children’s rehabilitation, will discuss the ways that normative conceptions of “the patient’s voice” act to foreground some children’s views while continuing to discount others. Dr. Bogossian, a social worker with extensive experience in child hospital services, will discuss the implications of considering children with neurodisabilities as moral agents and the impact of doing so for children, parents and clinicians in the context of preparation for transition from pediatric to adult healthcare systems. Dr. Montreuil, who holds experience as a nurse in child mental health, will discuss the concept of children as moral agents in the context of child mental health care, highlighting the double standard that prevails between children and adults in these settings, leading to injustices to children based in part on their non-recognition as moral agents.
Opioid crisis in Canada: Consenting to opioid treatment for nonmalignant chronic pain
Kyoko Wada, Louis Charland
Opioid overdose originating mostly from prescribed opioids has become a public health issue in some developed countries including Canada where 13.1 % of adults used opioids (2015) and hospitalization due to opioid overdose in the years 2014-2015 increased by more than 30 % from 2007-2008. A recent Canadian national report revealed that apparent opioid related deaths were 2458 in 2016, i.e. 8.8 per 100,000 population and exceeding 10 per 100,000 in some provinces. In Ontario, opioid related deaths doubled from 1991 to 2007, which was associated with an increased prescription of long-acting opioids. Recognizing the negative impact of opioid addiction and aberrant drug-related behaviors on individuals and society, clinicians are ethically obligated to support their patients make an informed decision about using opioids for pain control. Our research examines informed consent for patients with nonmalignant chronic pain, with a focus on their decision-making capacity. Ethical perspectives on prescribing opioids to these patients have revolved around harm of undertreating pain and harm of prescribing drug with potential for misuse and addiction. To date, ethics theories such as virtue ethics, deontology, and principle-based or case-based approaches were applied although no single theory adequately addresses this complex issue. Acknowledging the importance of these discussions, the patient’s decision-making capacity which could be compromised due to both pain and opioids has been little discussed. This is problematic as clinical and preclinical studies suggest the association of pain with cognitive and emotional impairments, both of which may undermine decision-making capacity. Further, the lack of consensus regarding the concept of decision-making capacity except for a few abilities based on the legal requirements in common law countries complicates the task of determining decision-making capacity of patients. Building on a few instruments tailored to assess capacity for making specific decisions (not scenario-based nor universal), we explore approaches to assessment of decision-making capacity of patients with chronic nonmalignant pain to enhance their autonomy as well as to protect them from unwanted harm.
Gender Affirming Surgery and Kantian Deontology: Can Harmony Be Achieved?
Understanding the ethical issues related to gender dysphoria has political, moral, and clinical implications. Particularly, when it comes to assessing how a smooth transition can be ensured, best interests of the patient is a noticeable priority. Gender Affirming Surgeries (GAS) are sometimes thought to be part of this process, but assessing the moral permissibility of this option has generated significant discussion. The aim of my paper was to assess the moral permissibility of GAS from a Kantian perspective, as this theory allows for mandatory support of a patient’s human rights, and to ultimately claim that GAS can be found permissible under Kant’s theory, despite how Kantianism may, prima facie, seem to reject GAS as a moral action. I begin the paper by assessing the potential concerns that may exist for GAS under a Kantian framework, based on how GAS seems to undermine the conditions of Kant’s Formula of Humanity and leads to treating oneself as a mere means. Next, I consider a potential Kantian eradication of this rejection using Kant’s theory of autonomy, as argued by Maggie Colene Hume, but ultimately find this conception to be problematic based the notion of autonomy that Kant supports. Finally, I posit my own positive account of how Kant can support GAS using his notion of bodily integrity and dignity of the self, as GAS may promote integrity for individuals with gender dysphoria, who would otherwise be at risk for or suffering from self-division. Similar to Kant’s discussion of how decayed body parts should be removed when they risk compromising an individual’s integrity, individuals with gender dysphoria feel jeopardized by body parts they do not associate with; this would, therefore, be reason enough for them to remove these compromising parts. Using this argument illustrates a direct connection to the protection bestowed onto those who identify as transgender, through the Ontario Human Rights Code, which I discuss in the paper. Additionally, I consider how one might object to my position by suggesting that upholding integrity is a perfect duty, meaning we must always follow it, and since GAS supports this bodily integrity to the highest degree, individuals experiencing gender dysphoria must undergo it. However, this might not always be a necessary part of the process for individuals looking to make a transition; thus, opponents to my view might suggest that relying on integrity does not truly support the best interests of the individual. I respond to this objection by clarifying that my discussion does not suggest GAS satisfies integrity to the highest degree and I suggest that in the future, it might be beneficial to revise Kant’s notion of perfect and imperfect duties. Ultimately, relying on the notion of bodily integrity to generate support of GAS from the Kantian perspective allows for enforcement of universal acceptance for human rights, autonomous decision-making to be supported, and assistance in the transition process for individuals experiencing gender dysphoria.
2B: 45 min. Conceptual Paper - Ethical Reasoning & Concurrent sessions (2 x 30 mins.) - Organ Donation / Transplantation (30 min. concurrent) Show Details
45 min. Conceptual Paper - Ethical Reasoning & Concurrent sessions (2 x 30 mins.) - Organ Donation / Transplantation (30 min. concurrent)
Barry Hoffmaster, Cliff Hooker
Real moral problems are complex, contextual, and dynamic. These demanding problems need to be framed, examined, and settled, and the analyses, constructions, and resolutions must be rational. The conception of ethics presented here is unusual because its approach to the nature of ethics is empirical and naturalistic. But how can such realistic depictions of ethics be normative? By recognizing what orthodox moral philosophy ignores: moral judgment. Determining which principles, values, and facts are relevant requires judgment; resolving conflicts between principles and values requires judgment; and applying general concepts to particulars requires judgment. Judgment is ubiquitous in our lives, and ethics is no exception. The normativity of ethics inheres in good judgment, and good judgment emanates from well-designed, rational processes of deliberation. Nonformal reason is a more expansive conception of rationality that is different from and independent of the formal reason of logic and mathematics and that suffuses our lives. Re-reasoning ethics is about constructing rational processes of deliberation that produce rational judgments. That is the best that finite, fallible human beings can do. Two real examples are used to illustrate the reality, the normativity, the deliberation, the judgment, and the rationality of real ethics. One is the plight of women who are at risk of having a child with a genetic condition and who were interviewed about how they deliberated about trying to get pregnant. This research provides an illuminating example of ethical decision making. The women’s genetic counselors believed that the women should decide by applying the principle of maximizing expected utility to their situations. The women disavowed the principlism of moral theory. Instead, they imagined scenarios of what it might be like for them and their family to live with an affected child, and they assessed their reactions to those scenarios. For standard moral philosophy, applying principles is the rational way to decide. But that narrow conception of rationality is not the only rationality. How these women deliberated is quintessentially rational. The other real example illustrates how the resources of nonformal reason are used to deliberate rationally. The deliberators are children with leukemia who were the subjects of an ethnographic study. These children desperately wanted to know what was wrong with them, but their parents and the health care staff remained stolidly silent. The children used the four resources of nonformal reason to discover that they were dying. And they remained silent. Understanding why and how what these children did presents a poignant, magnificent example of intelligence.
News Media Representations of Responsibility for Alcohol-related Liver Disease and Liver Transplantation
Kristie Serota, Rachel Hong, Grace Bannerman, Daniel Z Buchman
Introduction: For many people around the world, the news media is one of the main sources of information regarding health and illness. Media representations may influence viewers’ attitudes, perceptions of risk, and health behaviours by shaping social attitudes through the creation and reproduction of meaning. How the media constructs and frames the moral issues related to health and illness may influence social attitudes toward those who are ill. This may be particularly the case if patients are suffering from a condition that various publics describe as self-inflicted and the treatment involves the allocation of an absolutely scarce medical resource. While alcohol-related liver disease (ARLD) is the second most common reason for requiring a liver transplant, the practice remains controversial because people who develop ARLD are considered personally responsible for causing their disease. Some academic and clinical scholars suggest that because people with ARLD should be held responsible, they should receive lower priority for a transplant or should have to commit to a defined period of abstinence before transplant listing. The ethical issues related to responsibility, alcohol, and liver transplantation are well documented in the academic literature. The present study seeks to reveal how these ethical issues are presented for public consumption in the news media. Methods: We conducted a discursive analysis of news media articles to investigate how the theme of responsibility related to ARLD and liver transplantation was constructed through the journalists’ use of language. Newspaper Articles published in Canada, the United Kingdom, and the USA between January 1, 2011-July 18, 2016 were collected using a keyword search strategy in two online databases, Factiva and Canadian Newsstand. Results: Eighty-one articles were identified for inclusion from Canada (n=22), the United States (n=7) and The UK (n=52). The results suggest that media coverage of responsibility, ARLD, and liver transplantation indicates the source of responsibility lies within multiple actors such as individuals, the drinks industry, and social and political institutions. Individual responsibility was situated within a discourse of healthism, which is defined as a system of beliefs that situates problems with health and illness at the level of the individual and puts a moral duty on individuals to participate in health-enhancing behaviours3. Conclusions: How responsibility for ARLD is constructed in the news media may have important implications for public attitudes toward these patients in terms of social stigma, priority, and perceived deservingness of an absolutely scarce medical resource. 1 Lyons, A. (2000). Examining Media Representations: Benefits for Health Psychology. Health Psychology, 5(3), p.349-358. 2 Potter, J., & Wetherell, M. (1997). Discourse and Social Psychology: Beyond Attitudes and Behaviour. London: Sage. 3 Crawford, R. (1980). Healthism and the Medicalization of Everyday Life. Int. J Health Serv.,10(3), p.365-388.
The Ethics of Canadian Hospital, University and Professional Collaboration with Chinese Transplant Medicine
The Chinese transplantation system has been violating international transplant ethics, systematically, on a large scale, throughout the country, for years by sourcing organs from prisoners for transplantation. The Government of China has acknowledged the sourcing of organs from prisoners for transplantation and has claimed that the prisoners were all sentenced to death. The Government since 2015 has stated that the sourcing of organs from these prisoners for transplantation has stopped. However, there is compelling evidence that the sourcing of organs from prisoners for transplantation continues. Moreover, the bulk of these prisoners are prisoners of conscience arbitrarily detained, sentenced to nothing and killed for their organs. The level, quality and volume of evidence about the sourcing in China of organs from prisoners, in general, and from prisoners of conscience in particular is such that the United Nations Committee against Torture, the European Parliament and the United States Congress House of Representatives have all called on the Government of China to cooperate with an independent investigation into the sourcing of organs in China for transplants. The Subcommittee on International Human Rights of the Standing Committee on Foreign Affairs and International Development of the House of Commons of the Parliament of Canada, in light of the evidence of organ transplant abuse in China, has stated that it "encourages Canadian medical professionals, scientists, researchers and their professional organizations - as well as regulatory bodies - to continue their efforts to put an end to illegal and unethical transplantation practices" and "calls on medical and scientific professional and regulatory bodies to name, shame and ostracize individuals, institutions and their affiliates involved in the forced harvesting and trafficking of human organs." There are instances of collaboration, cooperation, research, training and exchange between Chinese hospitals, medical faculties of universities, and medical professionals and their Canadian counterparts. These instances raise ethical questions for Canadian institutions, in light of Chinese organ transplant abuse. The presentation would set out a brief summary of the historical and current information about transplant abuse in China. The focus of the presentation would be an attempt to answer this question: How Canadian hospitals, university medical faculties and medical professionals operationalize the call and encouragement of the Canadian Subcommittee on International Human Rights? How can they contribute to ending organ transplant abuse in China and avoiding any complicity in it? The presentation would consider standards already articulated by international and national professional bodies on the subject matter. The conclusion would be that right now ethical standards in this area in Canada are underdeveloped and need to be expanded to respond adequately to the call and encouragement from the Parliament of Canada.
2C: 60 min. Panel - Ethics and Politics & Concurrent sessions (2 x 30 mins.) - Resource Allocation and Equity Show Details
60 min. Panel - Ethics and Politics & Concurrent sessions (2 x 30 mins.) - Resource Allocation and Equity
Practicing Healthcare Ethics in Trumpland: From Disparities to Despair
M. Sara Rosenthal, Ph.D.; Caroline Buchanan, Ph.D.
November 9, 2016 marked the beginning of the Trump Era in the United States. This panel explores the sea changes and moral challenges that clinical ethicists are facing in practice in heavily conservative “Red States” that supported President Donald Trump in large margins. This panel will consist of two 20-minute presentations, followed by a 10 minute Q &A with participants. Presentation 1, by Dr. Rosenthal, will review the patient population and socio-ethical landscape in Kentucky, which is a “Trump State” but which relies heavily on the Affordable Care Act and the expansion of Medicaid for healthcare coverage of its constituents, many of whom suffer from opioid addictions. Presentation 2, by Dr. Buchanan, will review the troubling reproductive justice issues and TRAP laws in Kentucky, which is now uniquely threatened to become the only U.S. State with no abortion access at all, as the last abortion clinic is under siege by the Kentucky State government. Drs. Rosenthal and Buchanan will then open it up for questions and discussion, and will provide honest reflections of the moral distress experienced by U.S. healthcare providers on the "front lines" in the Trump Era.
Impacts of Interim Federal Health Program reforms on healthcare access and provision for refugees and claimants in Canada: A stakeholder analysis
Valentina Antonipillai, Andrea Baumann, Andrea Hunter, Olive Wahoush, Time O'Shea
Background: The Federal Government funded the Interim Federal Health Program (IFHP) since 1957, ensuring comprehensive healthcare insurance for all refugees and refugee claimants seeking protection in Canada. Retrenchments to the IFHP in 2012 greatly reduced healthcare access for refugees and refugee claimants, generating concerns among healthcare providers and other stakeholders affected by the reforms. In 2014 a new IFH program temporarily reinstated access to some health services however, little is known about the reforms and more information is needed to map its impact on stakeholders. Objectives: This study examines the perceptions of key stakeholders regarding the impact of the 2014 IFHP reforms on access and provision of healthcare for refugees and refugee claimants. Methods: Data was collected using semi-structured key informant interviews with refugee health policy stakeholders (n=23). Four stakeholder groups were identified: refugees and refugee claimants, policy makers and government officials, civil society organizations and professionals and practitioners. Using a stakeholder analysis stakeholder positions and influences regarding the policy were mapped and a content analysis, using NVIVO 10 QSR International, was employed to abstract themes associated with barriers and facilitators to access and provision of healthcare. Results: The findings reveal that the majority of stakeholders expressed concerns and opposing view regarding the 2014 reforms, with varying levels of ability to influence the policy. Moreover, the study conveys the perceptions of key stakeholders on barriers and facilitators to the access and provision of healthcare during the 2014 reforms. Five facilitators to accessing healthcare were identified. Eighteen themes emerged under health care access and provision barrier categories. There were four common themes perceived among all stakeholder groups, including lack of communication and awareness among refugees and providers. Conclusion: Overall, the reforms to the IFHP in 2014 generated barriers to health care access and provision that contributed to confusion among stakeholders, the transfer of refugee health responsibility to provincial authorities and the likelihood of increased health outcome disparities, as refugees and refugee claimants chose to delay seeking health care. The study recommends that policy-makers engage with refugee health stakeholders to formulate a policy that improves health care provision and access for refugee populations.
Just Payment in Ontario Health Care: Should Boutique Clinics Continue to Operate?
Jorge Sanchez-Perez, Leanne Woodward
Canadians’ commitment to equality in health care has led to a reluctance to allow provinces to run on a health care model that uses both public insurance and patient payments for primary care. The fear is that, when a patient is allowed to pay for primary care, a two-tiered health care system is created, where wealthy patients are given the luxury of faster, or better care. However, a two-tier health care system is already a reality in Ontario through the legal use of boutique medical clinics, which charge patients annual membership fees and provide public covered, primary care services. In light of boutique clinics creating a two-tier system, the concern no longer lies in the need to avoid two-tier medical care, but rather, has shifted to understanding how the establishment of regulations for boutique clinics can benefit all Ontario residents. This paper suggests that acceptance of more direct patient-paid care, alongside an increase in efficiency of the public system, can rectify the issues that have made boutique clinics so appealing. In the first section of this paper, we will acknowledge that the proliferation of these boutique medical clinics can be used as evidence to show that there is an interest for some patients in Ontario to obtain quicker access to primary health care, due in part to an unacceptance of the current waiting period. In the second section, we will analyze how the current two-tier system is operating and show that wealthy patients are unjustly benefiting from faster access to publicly-funded medical care through payment to boutique clinics. In the third section, we will address the consequences of maintaining the current legislation which prohibits charging out-of-pocket fees for care that is regularly covered by OHIP insurance. This legislation creates perverse incentives for clinics to provide medical services regardless of their need, resulting in many patients being subjected to unnecessary and potentially harmful medical testing and procedures. Our solution is to transform the current system through legislation that allows for private clinics to charge patients out-of-pocket fees for primary care, that would otherwise be covered under OHIP. This will reduce the money spent by the Ontario government on patients who are willing and capable of paying medical membership fees, as well as reducing the harm caused by unnecessary medical testing that could be done to justify these fees. This solution addresses the concerns patients have that causes them to seek boutique clinics, while also benefiting patients who cannot afford to pay for care by removing the requirement of charging the Ontario government for primary care. As part of our proposed solution, we will endorse the necessity of legislation that should place caps in the number of private clinics that can operate in a location, as well as the proportion of private-to-public clinics so that all citizens may have equal access to care, regardless of location. Thus, making this solution consistent with the Canadian commitment to equality in health care, as well as the need to provide the best health care possible.
2D: Reproductive Ethics (3 x 30 mins.) Show Details
Reproductive Ethics (3 x 30 mins.)
Global Justice in the Context of Transnational Surrogacy: An Afro-communitarian Approach
Ademola Kazeem Fayemi
The question of global justice lurks at the centre of commercial cross-border surrogacy industry. The practice of contracted pregnancy is commonly widespread and gaining increasing attention in the Global South. From India, Thailand, Tabasco, Nepal, South Africa to Nigeria, debates are ongoing on how best to regulate international commercial surrogacy with some States banning the practice. While the debates defy consensus on the most cogent normative and jurisprudential grounds in support and against non-altruistic surrogacy, it is less controversial that the unbalanced global structures of resource distributions, social exclusions and economic inequalities are saliently pivotal to the massive drift for surrogacy in the Global South. In this paper, I contribute to the debate by focusing on the social justice issues arising from trans-national moneymaking surrogacy. I argue that the existing theoretical perspectives, such as cosmopolitanism, communitarianism, and neorealism, on balancing interests, rights, privileges, and resources in the context of cross-border surrogacy are not sufficient in addressing the justice question undergirding transnational surrogacy in the Global South. I propose a distinctive Afro-communitarian theory of social justice to serve as an alternative plausible model for addressing the shortcomings in the subsisting global justice theories. While Thaddeus Metz has considerably constructed and defended this African approach, I argue that a fortification of the Metzian account with Odera Oruka’s egalitarian account of justice and the right to a human minimum might be a more cogent synchronized option of addressing the root fundamental causes of injustices in the Global South surrogate foray. Such an Afro-communitarian theory of justice defends transnational commercial surrogacy as a global problem requiring pluriverse moral intuitions and global legislations. While arguing against national ban legislations against commercial surrogacy, an Afro-communitarian approach to justice provides prima facie grounds for the moral worthiness of the practice of surrogacy under a just globalist system.
Is Anonymous Gamete Donation Unjust?
In 2004 the Canadian federal government passed the Assisted Human Reproduction Act (AHRA). This act governs many aspects of human reproduction, including permitting gamete donors to provide gametes anonymously and permitting intended parents to use anonymous donors for reproduction. When parents choose anonymous donors, the identity of the gamete donor is inaccessible to the donor-conceived offspring, even when they reach the age of majority. For many, this inaccessibility is profoundly unjust (for e.g.: Guichon, 2012). But is it unjust? There are at least two forms of justice that have discussed in the context of anonymous gamete donation: comparative and non-comparative justice. A comparative notion of justice might argue that donor-conceived individuals are relevantly similar to adoptees, who have a recognized right know the identity of their biological parents (Pratten v British Columbia, 2012 BCCA 480). A non-comparative notion of justice might argue that all human being have a basic interest in having access to the identity of their genetic parents (Velleman, 2005). As such, unless there exist other over-riding considerations, no person should be denied access to such information. Both of these particular interpretation have failed to be persuasive (Leighton, 2012 and Haslanger, 2009— respectively). I argue that the reverse situation would be unjust: it would be unjust if anonymity would be prohibited. This is true on both a comparative and non-comparative notion of justice. On a comparative notion of justice, couples and individuals who are in need of a donor for reproduction would face interference into their reproductive decisions to a degree that would be considered unacceptable for couples who did not need a donor for reproduction. Individuals and couples who already face reproductive challenges are then met with an additional barrier that individuals and couples not facing reproductive challenges are not met with (consider, for example, that a woman is not prohibited from having a one-night stand with a stranger with the aim of becoming pregnant, even if she intends to never disclose the identity of the donor to her child). On a non-comparative notion of justice, it would unjust to prohibit anonymity because its prohibition perpetuates and reinforces an oppressive social standard, namely bionormativity. Bionormative assumes that families that are genetically-related in a particular way (i.e., where genetic parents are identical with social parents) are better or more ideal families than families that are not related in this particular way (e.g., donor-conceived families, adopted families, post-divorce blended families, lesbian-headed families, etc.) (Haslanger, 2009). This standard discriminates against families that do not conform to this standard, and it unjustifiably restricts families within its framework. As I will show, such oppression is harmful to intended parents as well as donor-conceived individuals. As such, if we are to take injustice seriously, we must not prohibit the use of gametes from anonymous donors.
La notion d’équité d’accès dans l’implantation et l’évaluation de programmes publics de santé reproductive au Québec ; une analyse comparative.
En 2010, le gouvernement Québécois a instauré deux programmes de santé destinés aux futurs parents : le Programme québécois de procréation assistée et le Programme québécois de dépistage prénatal de la trisomie 21. Les deux programmes avaient en commun d’énoncer l’équité d’accès parmi leurs principaux objectifs. Ils avaient également en commun de susciter d’importants débats de société sur l’allocation des ressources et l’équilibre entre les intérêts de diverses parties prenantes individuelles et sociétales ; les individus, les gouvernements, l’industrie et les populations potentiellement vulnérables. Chacun des programmes a été réévalué à la lumière de ses coûts et de ses retombées entre 2014 et 2016, suite à quoi le programme de procréation assistée a pris fin. Cet article a pour objectif de décrire comment la notion d’équité d’accès s’est articulée dans les débats entourant chacun des programmes et la place qu’occupe cette notion dans leur évolution et comment elle a été priorisée ou subordonnée à d’autres impératifs. Ceci permettra de mettre en lumière les contextes sociaux, politiques et économiques qui déterminent la possibilité d’accomplir les velléités d’équité d’accès en matière de services reproductifs Cette analyse tiendra compte des différences relatives aux autres objectifs énoncés pour les deux programmes, soit la santé publique, « l’auto-financement » et le pronatalisme en ce qui concerne la procréation assistée ; et l’autonomie reproductive en ce qui concerne le dépistage de la trisomie 21. Elle tiendra également compte des réalités économiques et démographiques différentes touchant les deux programmes ; le dépistage prénatal étant relativement peu coûteux et destiné à l’usage d’un grand nombre d’individus, et la procréation assistée étant, à l’inverse, très coûteuse et requise pour un nombre limité d’individus. Finalement, cette analyse abordera les allégations de certains commentateurs voulant que des objectifs autres que les objectifs énoncés aient motivé la mise en place de ces programmes. Par exemple, un impératif électoral dans le cas de la procréation assistée et un impératif économique dans le cas de la trisomie 21. Ces affirmations pourront être nourries et nuancées à la lumière de l’analyse.
2E: Justice Issues / MAID (4 x 30 mins.) Show Details
Justice Issues / MAID (4 x 30 mins.)
Medical Assistance in Dying (MAiD): An Ethico-Legal Analysis of Current Challenges in the Canadian Context
Ricarda M. Konder and Timothy Christie
BACKGROUND: The current Canadian Medical Assistance in Dying (MAiD) legislation was introduced on June 17, 2016. In Carter v Canada (Attorney General), the majority concluded that denying a person access to MAiD violated the right to life under section 7 of the Canadian Charter of Rights and Freedoms in a way that was unconstitutional (as determined by the Oakes Test). From this ruling resulted Bill C-14 with which Canadians attempted to achieve the delicate balance between respecting patient autonomy while protecting vulnerable persons. During the last year of implementation, however, numerous problems have come to light within institutions and through individual court cases, suggesting that an ideal balance has not yet been achieved. The law thus requires further analysis in order to determine how patient care can be improved. OBJECTIVES AND METHODS: This project accomplished five tasks. First, we outlined a policy review conducted on existing MAiD legislation in 12 jurisdictions around the world (including Québec and the Canadian federal law). Second, we reviewed provincial Canadian court briefs to identify the prominent issues with the law. Third, anonymized patient cases at our healthcare institution were discussed to further highlight issues that have not yet made their way into the judicial system. Fourth, the identified issues were subjected to a section 7 (Charter) analysis using the same test (Oakes Test) as in Carter v Canada to determine whether they were constitutional. Lastly, we consulted the policy review to propose solutions to unconstitutional restrictions based on practices in other jurisdictions. RESULTS: The review of court briefs and patient cases revealed a total of five issues that are currently present in the federal law: the necessity of a terminal illness, the exclusion of the mentally ill, the necessity for a physician/NP to refer upon invoking conscientious objection, the capacity to consent over 10 days, and the violation of privacy due to the independent second witness requirement. Two further issues are predicted based on practices currently available in other jurisdictions: the illegality of advance directives and the exclusion of mature minors. Out of these seven issues, 6 were found to be unconstitutional via Oakes Test, and alternative solutions were proposed.
Medical Assistance in Dying: Not "Just" Enough
Since July of 2016, our organization has been providing medical assistance in dying (AID) to persons who meet the eligibility criteria as outlined in the federal Criminal Code. Along our journey, several justice issues related to these criteria have emerged that have led, we believe, to inequities in access for individuals who request AID. These issues fall into four general categories: a) differing views on what “counts” as unbearable physical and mental suffering with a tendency to privilege physical suffering; b) variation in how “natural death has become reasonably foreseeable” is understood; c) disagreements about how tightly to interpret “in an advanced state of decline that cannot be reversed;” and d) conflicting guidance in relation to the timing of provision with some suggesting that to meet the “intolerable suffering” criteria, an individual must be willing to proceed immediately following the 10-day waiting period and others allowing waiting periods of many months. Based on conversations with healthcare providers from other organizations across Canada, similar discrepancies have arisen elsewhere. In this presentation four patient scenarios that illustrate these potential inequities and are loosely based on real cases will be discussed. The first scenario is of a patient with metastatic cancer whose prognosis was thought to be around six months and there were no further beneficial treatments that could be offered. At the time of her request, she was able to take care of her activities of daily living slowly with minimal assistance. She was experiencing significant anxiety and was worried about her deteriorating health status and wished to proceed with AID sooner rather than later. The second scenario is about an elderly frail patient who had recent hip surgery. Following her surgery, she made a request for AID. Upon further discussion, she indicated that the reason she consented to the surgery was that she was informed that the risk of death during surgery was about 50%. She had hoped that she would die during surgery and was quite upset that she survived. Other than her age and general frailty, she did not have any other conditions that would increase her risk of death. The third scenario is of a patient with significant congestive heart failure who was refusing treatment. Although the available treatment was not curative, it could have improved his health status and perhaps at least somewhat impacted (reversed) his state of decline. The fourth scenario is of a patient with a degenerative neurological condition who was found eligible for AID. He did not want to proceed immediately to receive AID, but wished to delay until the birth of his first grandchild which was a few months in the future. A set of proposed recommendations that could be used to provide greater standardization around the interpretation of these criteria will be provided for discussion and feedback. We believe that without the adoption of a set of standardized interpretations, current access to medical assistance in dying will continue to be not “just” enough.
Medical Assistance in Dying (MAID) for Minors in Canada: Considering the Child's Voice for Future Legislation
Harprit Kaur Singh, Dr. Natalie Stoljar, Dr. Mary Ellen Macdonald
The Special Joint Committee on Physician Assisted Dying has recommended the extension of current MAID legislation in Canada (Bill C-14) to include mature minors. A mature minor is anyone under the age of 18 demonstrating sufficient capacity to understand their medical condition, and the risks and benefits of available treatments (Harrison, 2016). Although mature minors are the only minors being considered under the current recommendations regarding future legislation, Canadian health care professionals are already being approached with inquiries about MAID for minors who do not meet mature minor criteria (Davies & Shariff, 2017). Current eligibility criteria for MAID include a requirement for informed consent, and determining that the patient is suffering intolerably. Most minors are presumed, by the law and in health care practice, to not have this capacity. As a result, parents/guardians would have to act as surrogate decision makers (SDMs) to provide informed consent. Reliance on parents/guardians as SDMs increases the risk of inaccurately assessing the more subjective eligibility criteria for MAID, particularly suffering intolerably. This risk exists because these eligibility assessments would entail non-subjective accounts of the minor's intolerable suffering. Therefore, health care professionals' accounts of a minor's intolerable suffering also increase this risk. Inaccurate assessment of intolerable suffering could result in inadequate determination of whether MAID is in the minor's medical best interest, which raises concern about just access to MAID amongst minors. This paper explores how the child's voice, as representative of the child's experience(s), can be useful in adequately assessing that a minor is suffering intolerably, and thus factor into determinations of that child's eligibility for MAID. The theoretical constructs of children's agency and voice from the New Sociology of Childhood literature provide a theoretical foundation for elicitation of the child's voice as a plausible means of adequately assessing the intolerable suffering of a minor. The 'child's voice' refers to communication from the child using words, illustration, actions, assistive devices, or silence, that provides some understanding of the child's experience. This research began with a hypothesis that the subjectivity of suffering makes it important to incorporate the sufferers own voice in an accurate assessment of intolerable suffering. This hypothesis is tested against findings from literature on MAID, pediatric care and ethics, childhood agency, and suffering. This paper demonstrates that although the child's voice has a role to play in decision making pertaining to MAID for a minor, that role is not as straightforward as was originally hypothesized. This understanding is one contribution to the many considerations that need to be made in determining how to implement an extension of MAID legislation to minors in Canada.
Deepening healthcare providers’ perspectives on medical assistance in dying; A values-based self-assessment tool
Overview – Over the past two years, health organizations across Canada have had to support staff working to understand and adapt to a healthcare context where medical assistance in dying is legal. To aid in this process, Alberta Health Services’ (AHS) Clinical Ethics Service (CES) developed a values-based tool that can be used by health care professionals to help them to learn about medical assistance in dying and to start to understand their perspectives on the topic. The Challenge – One of the core challenges surrounding the organizational preparations for the legalization of medical assistance in dying in Alberta arose with the task of reaching an organizational complement of over 100, 000 employees and affiliated physicians. A further challenge was (and is) to promote thoughtful and reflective ways of thinking about assistance in dying, which is at once supportive of individual perspectives, and also contributes to the development of compassion and understanding of others. The values-based self-assessment tool was developed to assist in meeting this need. The Goal – A central purpose of the values-based self-assessment tool is to provide a mode for education and reflection that health care providers could use, alone, or in groups, with or without guidance from someone with ethics expertise, to clarify their perspectives, and plan for how they may negotiate their perspectives in their role. The intention for the tool is to achieve this greater clarity, provide a language that health care providers can use to describe their views, and to enable individuals to more deeply understand, and be able to engage with the perspectives of others, particularly those whose perspectives may be different. The Method – The values-based self-assessment tool is comprised of four sections: 1) An introductory section which outlines medical assistance in dying, 2) a values list which outlines many common values related to assistance in dying, 3) a description of six distinct perspectives on medical assistance dying which may represent the views of the user of the tool, and 4) a section which outlines the implications of each perspective and provides suggestions for how individuals can proceed to maintain these views in their role. The Presentation – This presentation will outline the intention of the values-based self-assessment tool, the processes used for its development, and how the tool has been received in AHS. Participants will have an opportunity to work through the tool to learn about its components and their function. This presentation will also include an outline of future pans within the AHS CES to develop similar resources to assist health care providers to develop a values-informed perspective on other issues.
2F: Research / Clinical Ethics (4 x 30 mins.) Show Details
Research / Clinical Ethics (4 x 30 mins.)
Is it time for Syrian refugees living in informal settlements in the Levant to have equal research protections as prisoners in the United States?
Michael Clinton, PhD; Lina El-Onsi Daouk, MSc; Nadine Kamal, BSc., LD
With the October talks between the Syrian government and selected armed opposition groups in Astana over with little progress, Lebanon continues to host more than 1 million Syrian refugees. An estimated 190 000 refugees live in informal settlements and another 120 000 in non-residential structures such as garages and shops. Sanitary conditions are poor. More than 71% of refugee households live below the poverty line with one-third affected by food insecurity. Depending on age group, between 48% and 84% of refugee children are out of school. The purpose of regulating human subject research is to protect participants from unconscionable past practices and safeguard them from emergent risks, but it is impossible to develop regulations that provide sufficient protections in all conceivable situations. Such is the variety and complexity of human subject research that gaps in regulation and ethical oversight leave some participants open to exploitation and harm. How serious this problem is depends on the risks involved. In general, medical research involving experimental drugs, invasive procedures, or new devices has higher risks than public health or other social and behavioral research. Similar regulations in Western jurisdictions require investigators to conform to principles for recruiting and consenting patients, protecting privacy, and maintaining confidentiality. The oversight required has produced a research ethics industry that sometimes frustrates public health specialists, qualitative researchers, and others who conduct research on vulnerable populations. Common criticisms are that the approval process is too long, irrelevant to social and behavioral science research, which is inherently benign, and inhibits potentially beneficial research. Whereas, there are grounds for such criticisms, they neglect the internal dynamics of the knowledge production industry and the self-interested global community of investigators who build reputations on uncovering new facts about vulnerable populations or the same facts in unique circumstances. International nongovernmental organizations (NGOs), overwhelmed by the refugee crises in the Levant, are funding studies to quantify the needs of refugees living in informal communities, and to a lesser extent the response of host communities to the influx of refugees. Concurrently, some of the world’s most prestigious medical schools are attracting funds to develop research programs aimed at bringing the best expertise to the problems of the most disadvantaged refugees. The urgency of the refugee crisis and the depth of suffering of those forced by war to live in informal settlements is a magnet for investigators eager to enhance or establish their humanitarian credentials and socio-political relevance. Is it time that the same regulatory controls are applied to research on refugees as those that protect prisoners in the United States? 1. UN High Commissioner for Refugees (UNHCR), Vulnerability Assessment of Syrian Refugees in Lebanon 2016.Available from: http://www.refworld.org/docid/586f59c94.html. [Accessed 1 November 2017].
Opting Out and Offers of ‘Alibis’ for Potential Living Kidney Donors in US Transplant Centres
Renata Iskander (1), Sanjay Kulkarni (2), Carrie Thiessen (2)
Purpose: 1) To delineate rates of and reasons for opting out of living kidney donation in the US. 2) To determine if and how transplant centres offer alibis to individuals who opt out. 3) To assess transplant professional attitudes regarding policy about alibi offers. Methods: We interviewed independent living donor advocates (ILDAs) and medical program directors from US transplant centres with the highest volume living kidney donor (LKD) programs. The semi-structured interviews inquired about rates of withdrawal from donation for non-medical reasons; reasons potential donors report for opting out; personal experiences interacting with individuals who withdrew; and attitudes towards alibi policy. The transcripts were analyzed using standard qualitative coding techniques in NVivo. Results: There were 45 participants: 22% medical program directors and 78% ILDAs. No transplant centre systematically tracked rates of opting out. The most commonly reported reasons for opting out included: fear of impact on health or surgical risks (17%), financial problems (11%), and pressure or coercion from family or the intended recipient (10%). Eighty percent of respondents said their centre sometimes or always offered alibis to all potential donors while 13% of did not and 7% were unsure. Most centres offered non-specific statements of ineligibility to donate, whereas 18% occasionally provided alibis that included false or exaggerated medical information. Few participants had ever personally offered an alibi. Those who had been involved rarely knew if the alibi had been used or how it had been received by the intended recipient. Most centres do not recontact those who opted out. The majority (78%) of participants were unaware of any UNOS/OPTN policy about alibis; one individual (2%) correctly stated that there was no such UNOS/OPTN policy. Two-thirds (67%) were in favour of introducing either policies or guidelines regarding the use of alibis, while 27% opposed, 2% unsure, and 4% who believed that alibis should be prohibited. Discussion: Understanding the experience of individuals who withdraw from donation is critical to evaluating the ability of potential living donors to exercise their autonomy. However, we found that most US transplant centres do not know much about the long-term experiences of those who opt out of living kidney donation. The reasons for opting out reported by the ILDAs underscore the need for improving donor-centred discussions about risk, enhancing financial support to minimize the burden of lost wages, and the importance of maintaining ILDAs as donor advocates. At present, there is no OPTN/OPTN policy regarding alibi offers for LKDs who opt out or mechanisms specifying how the confidentiality of their health information is respected. Our study reveals a range of current methods for and attitudes towards alibi provision. Further work should identify practices demonstrative of standards that preserve LKD autonomy, welfare, and relationships with their intended recipients through an ethic of care that minimizes harm. Conclusion: Our results highlight the need for further study of individuals who opt out of living kidney donation. They also suggest avenues for transplant centres and policymakers to develop guidance to improve ethical care for those who opt out.
How are ethics and diversity services related? The case of designing an intensive course for capacity building in clinical bioethics
Allen Alvarez, Duncan Steele, Bashir Jiwani, Katherine Duthie, Christy Simpson
We explore the relation between support services in healthcare that aim at building capacity in (1) ethical decision-making and (2) diversity (or cultural) competence among staff within the organization. We do this by examining the philosophy and experiences of Fraser Health Ethics Services (FHES) in designing its five-month Bioethics course. From 2006 to 2017, FHES has delivered an annual five-month intensive course in clinical Bioethics. It is an evolving experiment where the next iteration of the course is changed according to feedback received from previous participants. To illustrate a key aspect of such evolution, we present how we incorporated ethical theory in teaching systematic analysis of values. The key lesson learned is that ethical theory tends to be better understood if presented after teaching participants the basics of how values (specific to clinical situations they encounter) should be examined, and then later pointing to ethical theories (e.g. deontology, utilitarianism, “principlism,” and virtue ethics) as resources for broadening understanding of the many different specific values relevant to a situation. This also includes discussion of how conflict between specific values can be better understood in making good decisions. Plurality and conflict of values is inevitable in diverse societies but conflict of values can be mitigated by widening the scope of values to include in decision-making. We use the method of Wide Reflective Equilibrium (WRE) in facilitating deliberate inclusion of diverse values in decision-making. WRE enables us to live up to the value of respect for pluralism as well as make our analysis of relevant values more comprehensive. We avoid narrow reflective equilibrium that privileges only one value-perspective over others. As one participant to the Bioethics course has said “the course helped me better understand how including other perspectives and values in the deliberation can help in making better decisions.” The core philosophy of FHES is embodied in its mission to influence and change the decision-making culture of the healthcare organization towards living with greater integrity. From an individual perspective, integrity is defined as intentionally making decisions that live up to one’s examined values. From a group or organizational perspective, integrity is defined as making collective decisions that live up to the group’s or organization’s shared values. Based on the approach FHES takes to understanding the connection between diversity and ethics, this is integrated into the Bioethics course by discussing the intersection of respect for pluralism of values (that needs to be included in making good collective decisions that live up to the values of all stakeholders) and developing capacity for respectful relations within the diverse organization and regional population. In the presentation, this connection will also be discussed around an on-going and very challenging ambition of respecting pluralism. A diversity support service is essential in informing and enabling ethical decision-making to be effectively pluralistic by fostering the necessary knowledge and skills for analyzing diverse perspectives and values. Decisions based on deliberations that unjustly privilege the values of only a few while ignoring the values and perspectives of other stakeholders fail to promote integrity.
Qualitative research ethics in humanitarian contexts: A content analysis of ethics reviews from the Médecins Sans Frontières (MSF) Ethics Review Board
John Pringle, Grace Ku, Raffaella Ravinetto, The Médecins Sans Frontières (MSF) Ethics Review Board
Background: For humanitarian action to be well informed, research in humanitarian contexts must be valid, reliable and ethical. In 2001, Médecins Sans Frontières (MSF) established an independent Ethics Review Board (ERB) comprised of a multidisciplinary group of leaders in global health and research ethics, tasked with reviewing and approving MSF research involving human participants. Over the years, MSF’s qualitative research has increased in number, creating an opportunity to reflect on qualitative research ethics in humanitarian contexts. Aim: To identify and discuss the unique considerations of qualitative research ethics in humanitarian contexts Methods: Based on the MSF ERB Framework, we conducted a content analysis of 21 qualitative and mixed-methods protocols submitted to the ERB over a twelve-month period (September 2016 – August 2017). Results: The MSF ERB reviewed 10 qualitative and 11 mixed-methods research protocols, drawing attention to the following issues: rationale (whether the study was justified); recruitment (how potential participants were identified and approached); methodology (whether it was appropriate); triangulation (how different forms of data were converged); community engagement (whether it was sufficient); disclosure (whether there is duty to report); and voluntariness and philanthropic misconception. Conclusion: Increasingly, qualitative research in humanitarian contexts is playing an important role in producing knowledge, guiding practice, and informing global health policy. Qualitative research in humanitarian contexts can be fraught with risks of harms and wrongs in ways that may not be apparent. This session presents key ethical considerations for humanitarian qualitative research, drawing lessons for qualitative researchers in similar contexts marked by vulnerability and suffering.
2G: Organizational Ethics (4 x 30 mins.) Show Details
Organizational Ethics (4 x 30 mins.)
Negotiating pathways between available health evidence and knowledge healthcare leaders require to address the Truth and Reconciliation Commission’s call for actions
Moneca Sinclaire, Janice Linton, Elizabeth McGibbon
In Canada, the Call for Actions issued by the Truth and Reconciliation Commission (TRC) challenge those involved in healthcare service and policy-making to take responsibility for reconciliation by cultivating a collective understanding of health that considers the persistent impacts of historical and ongoing colonization and recolonization. Yet, our ability to cultivate this collective understanding of health is dependent on the base of evidence available to health leaders, and in particular, the diversity of worldviews informing the evidence. As researchers involved in a larger study concerning heart health, our response to the TRC call for actions was to conduct a scoping review of published literature concerning heart health among Indigenous People. The scoping review study aim was to map worldview diversity that underlies the evidence-base available concerning adult onset coronary artery disease among Indigenous Peoples from North America (Canada and the United States), Australia, and New Zealand. Multiple databases commonly used by healthcare communities were systematically searched, which produced 150 eligible articles published between 2004 and 2017. Extraction of evidence concerning the underlying worldviews was completed by two reviewers (one First Nations and one Non First Nations) and categorized as biomedical, biomedical and social blend, critical social, and Indigenous. Findings suggest there is minimal diversity of worldviews informing relevant research literature. We present a quadrant analysis map that displays how a colonized reality is informing collective knowledge available for practice, policy, and research contexts. We suggest that published research evidence concerning coronary artery disease among Indigenous Peoples is insufficient to meet the TRC’s reconciliation challenge. Moreover, the privileging of biomedical evidence is an example of ongoing colonizing structures that overshadow, delegitimize and silence other equally important worldviews concerning health. Embracing and generating evidence from non-dominant and often silenced worldviews is imperative to generate strategies to alleviate health inequity and redress the historical legacy of colonization. Although the scoping review results may not be surprising, they shed light on problems that go beyond the ongoing dominance of generating evidence from a singular worldview. The librarian (JL) involved in this study suggests that within current health databases there is an undermining of efforts to support an evidence-base that includes multi-faceted views of health inclusive of Indigenous worldviews and experiences is the dominance of bio-medicine. We are hampered by the rigid biomedical constructs found in subject headings used to describe illness, wellness and people in the health databases. Thus, the influence of this singular worldview reaches beyond the research methods, to influencing archival structures and methods. In the end, responsiveness to redress our colonial relations will emerge as we open to and respect space for worldview diversity underlying our evidence sources. The challenge is to build pathways between our hearts and minds to inform our research, policy and practice contexts. Through our response to the TRC’s calls for action, we shed light on the importance of and propose ways to reconcile moving beyond biomedical perspectives to understand and research health among Indigenous Peoples.
Home Bittersweet Home: Resolving Inequitable Complex Hospital Discharge
The avoidance of unnecessary hospitalization and the provision of sustainable, quality home care are often viewed by healthcare organizations as the gauges for quality, safe, and fiscally responsible healthcare service (Baker et al., 2011). Data regarding readmission to hospitals in Ontario have been used as metrics to study the quality of discharge processes (Mahmoudi et al., 2016). Readmission to hospital within 30 days of discharge is tracked in Ontario, and this has remained fairly stable over an eight year period. However, despite the seeming stability, alarming inequities exist regarding the populations who face the most readmissions and unplanned emergency department visits. Homeless patients are four times more likely to be readmitted to hospital than low income control patients (matched on age, sex, and primary reason for readmission) (Saab et al., 2016). Homeless patients with mental health issues are also much more likely to be readmitted within 30 days (Lam et al., 2016), as are those patients struggling with addictions (McIntyre et al., 2016). Additionally, readmission as a criterion to evaluate the quality of discharge does not paint a clear picture of whether or not discharges are sustainable and appropriate. We generally know little about a patient’s experience of risk or harm when home, and the experience of living with those risks. We also know little about whether or not patients feel that their values are met adequately in the transition planning process. What we do know is that, in the past four years in Ontario, there has been a 16.8% increase in home care patients (in home for at least 60 days following discharge) who experience severe pain. In total, 1 in 5 home care patients experienced severe pain at home in 2016/17 (HQO, 2017) In the past four years, there has been a 14.6% increase in experiences of distress, anger and depression among caregivers, related to the caregiving role (HQO, 2017). Care in the community does not appear to be sustainable, even if this is not reflected in readmission numbers. Health care teams often report feelings of helplessness and moral distress, when faced with challenging discharges. With the very real pressure to transition patients responsibly and to be good stewards of resources, and in light of population and system inequities, it is reasonable to predict an increase in staff experience of distress, burdens on long term care, and admissions to hospital beyond 30 days post discharge (due to caregiver burnout, lack of sustainable community resources, etc.) As a response to these realities, Toronto Rehabilitation Institute has created a set of guiding values and principles, and a framework to help resolve complex discharge situations in the rehabilitation sector that will be presented in this discussion. It will be argued that standardizing risk assessments and patient communication, improving post-discharge planning and follow up, focusing on strategic community partnerships, and gaining a better understanding of vulnerable populations will lead to more sustainable and equitable discharge processes.
Social Pathologies of Health Care: Identifying Macro Structures for Political Potentials
Alex B. Neitzke
This talk theorizes the concept of "social pathologies of health care." The concept is my attempt to bridge normative components of bioethics with the descriptive components of sociology, economics, and "functionalist" critical theories. Social pathologies of health care identify the influence of economic and political structures in moral deficits in health care delivery. The concept is meant to identify a corresponding population with the potential for struggle to reform and disrupt those structures. I argue that this social pathology concept brings new potential for bioethics in that it goes beyond mere normative theorizing regarding what ought to be done, and instead contributes more directly to addressing those structural challenges in health politics and health care justice, which seem to resist ethics alone.
Exploration de la perception péjorative du concept de conflit d’intérêts dans l'académie
Charles Marsan, Bryn Williams-Jones
La littérature traitant des conflits d’intérêts (CI) montre que ces derniers soulèvent des enjeux majeurs tels que la confiance du public envers les scientifiques, la réputation de l’académie et de ses membres, la bienfaisance envers les clients et patients, l’intégrité de la recherche et de l’administration, la validité des connaissances scientifiques et le financement universitaire. On définit souvent le CI comme étant une situation à risque d’altérer notre jugement ainsi que nos actions en privilégiant des intérêts secondaires (personnels) au détriment d’intérêts primaires (par exemple, pour un médecin l’intérêt du client). Mais puisque le mot «conflit» a une connotation négative, l’expression «conflit d'intérêts» crée un biais négatif qui encourage les gens à le caractériser comme mauvais en soi. L’embarras avec cet entendement, c’est qu’il amène la perception que la plupart sinon la totalité des problèmes avec les CI sont le résultat de la corruption ou de l'inconduite de quelques «pommes pourries». Le fait d’avoir une mauvaise perception des CI et de mal les comprendre fait en sorte qu’on nie généralement ces situations, ce qui remet en question l’utilité du processus actuel de déclaration des intérêts. Afin de décrire l’ampleur du problème dans une université de recherche, nous avons recueilli des données concernant la perception et la compréhension des CI chez les divers acteurs universitaires. L’une des hypothèses voulant que l’attitude dépréciative par rapport aux CI se retrouve chez tous les acteurs de l’académie, nous avons adressé un questionnaire de sondage composé de 77 variables (14 indépendantes, 55 dépendantes sous forme d’échelles de type Likert et 8 ouvertes) par courriel à un échantillon probabiliste de 5074 membres de l’Université de Montréal fournis par le Bureau de la recherche institutionnelle. Le taux de réponse a été de 33,7% chez les membres du personnel (enseignant, administratif et de soutien) et de 21,7% chez les étudiants (1er, 2e, 3e cycle et stagiaires postdoctoraux) pour un effectif total de 1517 participants. Nous avons effectué une analyse factorielle exploratoire des données en appliquant la méthode des moindres carrés non pondérés et une rotation Oblimin sur 25 variables mesurant l’attitude face au concept général de CI et la perception du risque de situations typiques, avec le logiciel IBM SPSS. Cette procédure a permis d’arriver à une solution factorielle simple, avec un indice KMO de 0.841 pour six facteurs expliquant 51.9% de la variance. Nous avons analysé le premier facteur qui comprend huit indicateurs mesurant l’attitude péjorative face aux CI. L’analyse de fiabilité (cohérence interne) de ces huit variables révèle un coefficient alpha de Cronbach de 0.866, ce qui nous a permis d’élaborer une échelle de mesure fiable de l’attitude péjorative envers les CI. Aucune des variables indépendantes mesurées (statut, niveau de scolarité, domaine de formation, autoévaluation du niveau de compréhension, âge, genre, origine) ne permet d’expliquer la variance dans l’attitude péjorative envers les CI. Ces résultats suggèrent l’importance pour les directions universitaires de promouvoir une conduite responsable en recherche et dans l’enseignement par la sensibilisation et la formation de tous les acteurs au sujet des CI.
2H: Resource Allocation and Equity (4 x 30 mins.) Show Details
Resource Allocation and Equity (4 x 30 mins.)
Conceptualizing the Intersectoral Pursuit of Health Justice
Dr. Maxwell J. Smith
Social policies outside of the health sector—in domains like education, labour, finance, transportation, and housing—contribute to the background social conditions that shape population health and mediate the effectiveness of health policies and interventions that aim to reduce health inequities. In other words, substantial and sustainable progress on health justice appears to be predicated on the willingness and capacity of non-health sectors to support and invest in this public health goal. Unfortunately, two of the central barriers to reducing health inequities in Canada have been identified as (1) mobilizing action across non-health sectors and (2) collaborating intersectorally given competing pressures and sector-specific terminologies and approaches (Public Health Agency of Canada, 2011). Thus, it is crucially important to examine why non-health sectors have failed to mobilize action on health inequities and explore how intersectoral collaboration to reduce health inequities can be realized in Canada. In recent years, significant investments have been made to study and develop intersectoral strategies to reduce health inequities; however, these strategies have hitherto neglected an examination of the role that ethical values play in constraining or promoting action on health equity in non-health sectors, despite the fact that ‘health equity’ is an inherently ethical concept. This is a crucial gap, as the values and aims undergirding the health sector’s pursuit of health equity may be at odds with social policies in other government sectors, which may consider the reduction of health inequities to be peripheral to, if not incompatible with, their own values and objectives. For example, in the area of education (a central social determinant of health), health and health equity may be overlooked, deprioritized, or undermined if they come at the cost of achieving particular educational objectives or if they conflict with the education system’s pursuit of what are considered to be equitable education processes and outcomes. Without accounting for and ultimately striving to achieve congruence between values across government sectors, intersectoral strategies to reduce health inequities may be inhibited or altogether thwarted. To this end, this presentation will report findings from an empirical ethics study that sought to identify and understand areas of value consonance and dissonance between sectors that may manifest within existing intersectoral strategies to reduce health inequities. This study involved qualitative interviews with provincial (Ontario) policy-makers from both the health and education sectors, which were analyzed and interpreted in light of theoretical accounts of health justice, educational justice, and social justice. By situating these findings and the intersectoral pursuit of health equity within accounts of justice that carefully weigh justice in health against the pursuit of values and goods in other sectors, this research aims to enhance the theoretical and practical coherence of prominent initiatives designed to reorient social policy toward health equity goals (e.g., ‘health in all policies’ initiatives) and assess and improve the equity impacts of public health interventions (e.g., health equity impact assessments).
Thinking explicitly about ethical issues in health technology assessment: Lessons from CADTH
Background: Health technology assessments raise ethical issues, both pertaining to the technologies they assess, as well as to the methodology of the assessment. While methods in ethics exist, there have been relatively few applications of these methods in production of HTAs. CADTH began to include an explicit analysis of ethical issues within its HTAs in 2015. Objective: To compare and contrast the conduct of the analysis of ethical issues for four CADTH health technology assessments and the contribution these analyses made to the development of health care coverage recommendations. Methods: We examined ethics analyses conducted by CADTH for four technologies: dMMR testing for colorectal cancer, treatments for obstructive sleep apnea, dialysis for end-stage liver disease, and HPV screening for cervical cancer. Information on methods of analysis and presentation of results and extent to which the ethics analysis was used in committee deliberations was gathered via meeting notes, recommendation documents, and discussion, and were summarized narratively. Results: The amount of literature explicitly discussing ethical issues pertaining to particular technologies varied and was not predicted by the age and maturity of a technology. The axiological approach proved a helpful starting point for ethical reflection, but was not sufficient for analysis and presentation. Explicit discussion of ethical issues identified a need for additional information to ensure robust deliberation. Committee members, most of whom have no training in ethics, expressed belief that ethics analysis “brought together” individual sections of the HTA. Conclusion: While “many methods” exist for ethics analysis, ethics expertise is required to identify and explicitly discuss the complete range of ethical issues relevant to a particular health technology assessment. Ethics analyses create space to challenge assumptions underlying the clinical and economic evidence, raise issues about the value of technologies, and help to integrate the assessment results.
A Resource Allocation Framework: Balancing Justice and Efficiency
Al-Noor Nenshi Nathoo
Allocating scarce healthcare resources using a systematic and rigorous methodology that explicitly takes into account considerations of cost, evidence, and justice, is a complex undertaking. While recognizing the challenges, Alberta Health Services (AHS), a provincial healthcare delivery organization with a budget exceeding $13 billion, recently undertook the development of a resource allocation framework that would provide support to senior decision-makers when considering financial decisions. While not designed to be determinative, the framework is intended as a tool to equip leaders to make more informed decisions – i.e. determinations based on both the best available evidence, as well as on considered values. The attempt to explicitly incorporate value considerations into a more intentional priority-setting process was borne of questions arising from, and distress experienced by, decision-makers in confronting difficult choices. In a just society, how should the commitment to providing fair opportunity for good health be balanced against the requirement to ensure the efficient use of scarce resources in a particularly difficult economic climate? When roughly equal expenditures of funds can produce life-extending benefits for a few receiving costly treatments, or conversely, moderate benefits for many receiving relatively efficient interventions, how should these be weighed against each other? While such questions are familiar conundrums in healthcare resource allocation, their articulation by leaders and clinician managers in the organization, along with many other related concerns, suggested a need for a framework to support the decision-making process and assist in weighing competing values. In an attempt to provide a carefully considered and defensible method of addressing such vexing questions, AHS initiated a process to develop a resource allocation framework, consulting with a wide cross-section of stakeholders internal and external to the organization and building on learnings in relevant literature. Coordinated by the AHS Clinical Ethics Service, the initiative has relied particularly heavily on health economics expertise within the AHS Research, Innovation & Analytics Portfolio, along with that of key clinician leaders from the AHS Strategic Clinical Networks and elsewhere. The resulting framework, in its early stages of development and refinement, is a tool that incorporates the use of ‘cost per quality adjusted life year’ as a measure of cost-effectiveness, while attempting to mitigate some of the ethically problematic implications of the exclusive use of such criteria through explicit weighted scoring based on considerations of equity. The framework is currently being piloted through a process of testing against challenging and pressing resource allocation questions arising in various sectors of the organization. A number of the underlying value trade-offs implicit in the framework are also being tested through a sustained consultation exercise with a large number of patient, family and care provider advisory and representative groups. The hope is that continued and wider analysis and discussion will result in constructive feedback that can be incorporated into future iterations of the framework and a tool that is, increasingly, both useable and ethically defensible.
Le traitement du vieillissement dit normal : injustice intra et inter-générationnelle ?
La toxine botulinique (Botox), la chirurgie plastique, les solutions d’acide hyaluronique, l’hormone de croissance, l’hormonothérapie de remplacement et bientôt la thérapie monoclonale sont autant de manières de transcender la condition humaine, la finitude de notre être, la mort à petit feu. Il serait possible de rester « jeune » plus longtemps. Pourtant, le vieillissement n’est-il pas la seule condition humaine qui nous frappe tous équitablement, d’où l’adage : « chacun vieillit d’un an par année » ? Pour Georges Canguilhem, un philosophe français, qui a beaucoup réfléchi sur les questions du normal et du pathologique, le vieillissement est toujours normal. Pour certains auteurs du domaine médical, il existe des formes de maladies qui apparaissent plus fréquemment avec l’âge avancé, mais le vieillissement comprend une déchéance du corps inexorable. Le miroitement de thérapies pour des conditions dites normales, serait-il une forme moderne de charlatanisme injuste ? Aussi, ces traitements en plus d’être possiblement inutiles, sont dispendieux et peu accessibles à la majorité. Plusieurs personnes de l’âge d’or paient des sommes importantes pour avoir accès à ces thérapies de remise en forme et de lissage de la peau. Aussi, certains symptômes des maladies comme le panhypopituitarisme, l’andropause et la ménopause ressemblent de très près aux symptômes du vieillissement dit normal. En effet, la faiblesse musculaire, la baisse de libido, l’augmentation de masse graisseuse et la diminution de la masse musculaire ressemblent à des caractéristiques associées au vieillissement dit normal, mais que l’on retrouve aussi dans les maladies mentionnées précédemment. Serait-ce simplement les dosages d’hormones dans le sang du vieillard qui définit sa maladie ? Une idée qui attirait la critique de Canguilhem qui mentionne que le patient n’apprend pas sa maladie du médecin (ou du laboratoire), mais plutôt le contraire. C’est parce que le patient a un ou des symptômes, un inconfort qu’il est dit « malade ». Un traitement de certains, mais pas des autres qui présentent exactement les mêmes symptômes, est-il éthiquement acceptable pourtant ? En outre, le vieillissement des populations mondiales demandera de plus en plus d’investissement des gouvernements pour se préparer à cette vague démographique selon l’OMS. Les principes de justice sociale et de répartition des ressources posent la question du traitement de symptômes du vieillissement qui sont en fait des manifestations crues normales pour l’âge qui causent des souffrances réelles. Nous tenterons des amorces de réponses durant notre exposé.
|5:00 pm - 6:30 pm||
Student Mentorship Event (University Club Games Room) Show Details
Student Mentorship Event (University Club Games Room)
Friday, May 25th, 2018
|7:30 am - 8:30 am||
CAPHE Annual Meeting
|8:00 am - 8:30 am||
|8:30 am - 10:00 am||
Plenary Presentation: ‘Healthy’ – only if you’re wealthy? Show Details
Senate of Canada
Department of Philosophy / Dalhousie University.
Plenary Presentation: ‘Healthy’ – only if you’re wealthy?
Senate of Canada
Department of Philosophy / Dalhousie University.
|10:00 am - 10:30 am||
Morning Networking and Refreshment Break
|10:30 am - 12:00 pm||
3A: Clinical Ethics (3 x 30 mins.) Show Details
Clinical Ethics (3 x 30 mins.)
Contributing to Justice? Evaluation of Embedded Ethicist Model in Critical Care
Eoin Connolly, Dianne Godkin, Michael Campbell, Elizabeth Mansfield, and Caroline Variath
Critical care units are complex, fast-paced environments where many types of ethical issues can arise. There is evidence that involvement of a clinical ethicist in critical care units can improve treatment decision-making, assist in the resolution of ethical uncertainties, and reduce the number of days on mechanical ventilation as well as the length of stay for patients who do not survive to discharge (Bruce et al., 2014; Schneiderman et al., 2000). There is also evidence that patients in critical care environments do not always receive treatment that is consistent with their wishes and values (Heyland et al., 2015). Trillium Health Partners recently implemented an Embedded Ethicist Model in Critical Care by assigning a full-time ethicist to its critical care program. The intent of the Embedded Ethicist Model is to proactively provide ethics support to key stakeholders, enhance ethical decision-making processes and outcomes, and build ethics capacity. Using mixed methods, an evaluation was undertaken to determine the impact and effectiveness of the Embedded Ethicist Model and to identify areas where further improvements can be made. Quantitative outcome measures were compared across three six month time periods—prior to implementation, 6 and 12 months post implementation. Quantitative outcomes measures included the number of ethics consultations and hours of education; length of stay in critical care unit; total length of stay; and number of days on a ventilator. The qualitative component of the evaluation included focus groups and individual interviews of key stakeholders. It was found that the number of ethics consultations in the critical care program has increased more than fivefold; this increase was sustained across time. The number of hours of ethics education directly tailored to critical care healthcare providers also substantially increased. A significant reduction in average length of stay in critical care from 11 to 8.6 days (p less than .05) was noted. There were no significant changes in total length of stay in hospital or number of days on a ventilator. Through the qualitative component of the study, stakeholders reported that the Embedded Ethicist Model was a positive support for patient, families and staff, enhanced interprofessional communication as well as communication between the healthcare team and the patient/family, and increased system efficiency through expedient resolution of conflict. The Embedded Ethicist Model has contributed to the just care of patients in critical care by increasing the likelihood that patients received the right care, in the right place, at the right time. Findings will be used to inform the further development of the Embedded Ethicist Model within and beyond the critical care environment.
Chemotherapy and Court-Ordered Mandates: The Problems with the Best Interests Standard as a Basis for Legal Decision Making
D. Robert MacDougall
Two recent cases in Ontario involved aboriginal girls with leukemia who both pursued traditional aboriginal treatments instead of potentially lifesaving chemotherapy. Many physicians and bioethicists wrote critically about the decisions of child protective services and the courts in these cases, claiming that these legal authorities should have acted in the children's’ “best interests” by seeking or providing court-ordered mandates for treatment. In this talk, I assess the limitations of the best interests standard, and argue that while the standard is helpful for clinical decision making, it is a liability when used in legal decision making for cases like these. The primary ethical issue from the perspective of the state is not the nature of the child’s best interest, but rather two issues best dealt with from a theory of justice. First, I defend the actions of the physicians, who were right to utilize the best interests standard and subsequently to report the cases to authorities. Because children are usually unable to act autonomously, physicians should report decisions that appear not to be in the best interests of children. Physicians’ determinations about the child’s best interests should be limited in two important ways: their judgments should be based (first) on the narrow self-interest of the child and (second) on purely medical assessments of interests. These limitations are beneficial aspects of clinical decision making, I argue, because they substantially simplify clinical decisions, and because they encourage physicians to make judgments strictly within their professional competencies. Second, however, I argue that the limitations of the best interests standard—the same limitations that make the principle beneficial when applied by physicians—can become a liability when used by legal authorities. First, while physicians should consider the narrow self-interest of children, the state must take into consideration the competing interests of a variety of parties. The state (unlike physicians) has a responsibility to assess competing interests and balance them against each other. In this case the state plausibly has a duty to consider not only the interests of the child but also the interests of the community from which she comes and the precedent a decision will set for similar future cases. Second, legal authorities cannot limit their interpretation of “best interests” to purely medical determinations. While the state has no special competency to judge either medical or other kinds of interests (such as social or cultural interests), it does have a responsibility to mediate in cases characterized by competing interpretations of a child’s interests. In such cases, the state cannot simply justify a decision by referring to the child’s best interests, since the content of the child’s interests is precisely what is at issue. I conclude that questions about balancing competing interests of different parties and mediating disputes about the nature of a child’s interests are best dealt with from within a theory of justice, rather than on the guiding principles familiar from clinical practice.
Exploring residents and recently graduated pediatrician’s perspectives on redirection of care in neonatal resuscitation
Mary Woodward, Andrea Hunter, Meghan McConnell, Connie Williams
Introduction: Pellegrino described the physician-patient relationship as a “healing relationship defined by three phenomena - the act of illness, the act of the profession, and the act of medicine”. Within this construct, he emphasizes the role of a physician competency. For pediatric physicians, some of the most challenging competencies include those related to the resuscitation of imperiled newborns. Even more difficult are the clinical and ethical competencies required to navigate an unsuccessful resuscitation. Physicians as moral agents, supporting parent surrogate decision makers, have little time to balance autonomy and paternalistic approaches to beneficence, in emergent and unexpected tragic situations. Moreover, most physicians entering practice have little experience in these scenarios beyond simulation. Finally, physicians’ experiences and perspectives on their own perceived competency in redirection of care in neonatal resuscitation has not previously been described. Objectives: To explore the challenges and experiences of pediatric residents and recently graduated pediatricians in redirection of care during neonatal resuscitation Methods: This project employed an interpretive design qualitative methodology, using an a priori educational theory incorporating the principles of social cognitive theory, deliberate practice, distributive practice and ‘choke phenomenon; using semi structured focus groups for data collection. Separate groups of residents and Pediatricians were enrolled. Data analysis was based on the interpretive analysis as described by Crabtree and Miller. Data validity was ensured by member check in and triangulation of themes across investigators. Validity criteria as described by Lincoln and Guba was applied. Institutional ethics board approval was obtained. Results: Both residents and recently graduated Pediatricians reported that they found redirection of care during an unsuccessful resuscitation extremely challenging. On a scale of 1-10, the residents rated their comfort level as 2. Participants reported an overwhelming fear of failure in clinical performance which challenged their role as moral agents. They feared that a lack of expertise and knowledge might lead to redirection of care. In addition, they described difficulty in focusing direction of care from intensive / interventional to comfort particularly in situations of uncertainty or requiring ethical decision-making. Additional obstacles, particularly outside of an academic setting, included a lack of resources and the feeling of isolation. Similarly, participants described challenges related to communication with families. These included explaining the circumstances of an unsuccessful resuscitation, acknowledging the family’s intense emotions, and navigating their responses to grief. Participants also reported distress related to their own self-confidence and a perceived ‘lack of preparedness for practice’ following training. Conclusion: Both residents and newly practicing Pediatricians identified both clinical and ethical challenges related to redirection of care following unsuccessful neonatal resuscitation. Lack of exposure and limited training opportunities were identified barriers for competency acquisition.
3B: Organizational Ethics (3 x 30 mins.) Show Details
Organizational Ethics (3 x 30 mins.)
Bringing Together Expertise, Experience and Ethics: Canadian Blood Services Bioethics Advisory Committee
Christy Simpson, Doug Ferguson, Aviva Goldberg, Michelle Zeller on behalf of the Bioethics Advisory Committee, Canadian Blood Services
The complexity of issues related to the donation, use and distribution of blood and blood products, hematopoietic stem cells, organs and tissues is well-known to many and continues to increase over time. For Canadian Blood Services, which is a not-for-profit, charitable organization (at arm’s length from the government) whose mission is to manage the blood supply for Canadians as well as the national registry for organ transplantation and raise awareness, this means that these issues need to be addressed as part of its decision-making processes. In 2016, Canadian Blood Services established an independent Bioethics Advisory Committee, bringing together a multidisciplinary group to support the application of ethical principles to relevant policy issues for this organization. In this presentation, the motivations for and development of the Bioethics Advisory Committee will be discussed. This includes a description of the overall purpose, mandate and scope of the Bioethics Advisory Committee. The presentation will also share a high level overview of examples of early work of the Bioethics Advisory Committee on issues such as stem cell recruitment and plasma donation. The central focus on the key values of Canadian Blood Services, namely safety, integrity, quality, respect, excelling, accountability and openness, and how these values are engaged with and employed as part of the Bioethics Advisory Committee’s work and analysis, will also be described.
A Role-Based Approach to Fellowship Training in Healthcare Ethics
Dave Langlois, Jerry Maniate, Michael Szego
Most hospitals in Canada have an ethics consultation service available to patients, families, and staff. As the field of healthcare ethics moves towards professionalization, there is still debate over what constitutes ethics expertise and about what kind of training should serve as a prerequisite to employment. The lack of shared standards and practices in ethics training poses a pragmatic challenge to the field, because the sustainability of the profession will depend in part on how we define, educate, and regulate ourselves. But one might also view the lack of standardization in training as a moral problem: as a matter of fairness to the patients and teams we presume to help, training in healthcare ethics should create consistency and quality in service. Our group, the Centre for Clinical Ethics (CCE), is taking constructive, proactive steps to confront these challenges. For many years, the CCE has offered a one-year fellowship program providing training in all aspects of healthcare ethics—clinical, research, and organizational—to individuals who have a background in ethics at the Masters or Doctoral level. Historically, we have employed an apprenticeship model of training, in which the fellow receives some formal didactic teaching with the majority of time spent observing, shadowing, and eventually carrying out the job of the ethicist under supervision. While this model has been successful in turning out trainees who have gone on to enjoy careers in healthcare ethics, we identified several gaps in both the training and evaluation of our fellows. Over the past year, we have begun redeveloping our fellowship program through the lens of the CanMEDS Physician Competency Framework. CanMEDS focuses on developing abilities in the following seven roles: expert, communicator, collaborator, leader, health advocate, scholar, and professional. We believe these key roles are highly relevant to the field of healthcare ethics and have adapted each one for the practicing healthcare ethicist. We also updated our curriculum, modeled after the ASBH’s core competencies and associated education guide, which we have embedded into the CanMEDS roles. An evaluation strategy has been developed for each role. Our presentation will focus on four core objectives. First, we will describe the training challenge currently facing the healthcare ethics field and argue that it is a serious pragmatic and moral problem. Second, we will explain how and why we are using CanMEDS to redevelop our fellowship training program, with special attention to how the CanMEDS Intrinsic Roles can be adapted to the ethics domain. Third, we will provide examples of how our fellowship’s curriculum and evaluation are being shaped by our new approach. Finally, we will outline some of the promising future opportunities and applications of our project.
Navigating Non-Medical Cannabis Policies in Healthcare Organizations
Julija Kelecevic, Kevin Reel
The proposed federal Cannabis Act provides a legal framework for controlling the production, distribution, sale and possession of non-medical cannabis (NMC) across Canada. Provinces will have the latitude to increase the minimum age, lower the possession limit, regulate where individuals can consume NMC, and set restrictions on the number of plants permitted per residence. While many professional colleges and associations across Canada have issued practice standards to provide guidance on use of medical cannabis, this does not address how healthcare organizations (HCOs), like hospitals or home and community care providers, ought to handle the use of NMC. Therefore, unless provinces pass relevant NMC legislation, HCOs must develop institutional policies if they want to control the use of NMC within the HCO or other relevant setting. For provinces that have proposed provincial legislation, HCO’s will want to ensure they have considered all relevant facets of the issue, including personal use of NMC by healthcare providers. By applying an ethical and policy analysis, we will explore the associated ethical and practice implications for HCOs developing NMC policies. Our exploration will address five issues noted herein and applicable ethical concerns such as patient-centred care, informed decision-making, patient safety, fairness, professionalism, trust, and harm reduction. When establishing NMC policies, HCOs should consider the following five issues: 1) locus of use, 2) permissible modes of administration, 3) clinical management, 4) security, and 5) the therapeutic relationship. The location in which NMC use occurs, i.e. institutional or community setting, poses unique practice concerns. For example, allowing smoking or vapourizing in a public hospital could contravene provincial smoke free and workplace health and safety legislation as well as institutional policy; however, in the home healthcare setting greater flexibility is required. The possible range of modes of NMC use could include smoking, vapourizing, or edibles, and each mode is accompanied by unique ethical and policy implications. Clinical management may include authorizing and prescribing medical cannabis for patients unable to access NMC as a harm reduction measure. Additionally, it may involve a change in administration modes. For example, if a patient that typically smoked NMC is hospitalized and smoking is not permitted within the hospital, a switch to another mode of administration, such as ingesting NMC. The security element pertains to avoiding the abuse, misuse and diversion of medical or recreational cannabis through appropriate storage and establishing guidelines for healthcare provider involvement. Finally, the therapeutic relationship entails consideration of trust and fostering non-judgmental, stigma-free behaviour.
3C: Disability Ethics (3 x 30 mins.) Show Details
Disability Ethics (3 x 30 mins.)
The Aid to Capacity Evaluation for Adults with Intellectual and Developmental Disabilities (ACE-IDD): Accessibility Guidelines to Support Functional Communication and Engagement
Health care professionals have a fiduciary duty to provide equitable access to care and respect the autonomy of persons when assessing capacity. All persons are presumed capable of providing consent, unless they are not able to understand or to appreciate the consequences of their decisions. Capacity assessment of individuals with intellectual or developmental disabilities (IDD) can be difficult when they may not communicate or behave in expected ways, putting them at risk of being deemed incapable when they may be capable to make decisions with the appropriate support. The UN Convention on the Rights of Persons with Disabilities and provincial accessibility acts require health care professionals to provide equitable care to persons with disabilities. Capacity and consent requirements are available through the Health Care Consent Act 1996 and health care professionals’ regulatory colleges; guidelines have also been published by the Joint Centre for Bioethics, and adapted for both pediatric populations and adults with IDD. However, these guides provide little explicit information on how to support adults with IDD prior to and during a capacity assessment to maximize comfort, lower stress, and enhance communication. The guidelines focus heavily on verbal interaction and lack direction on how to adapt environments and procedures or understand behaviours as a mode of communication. Furthermore, the health care environment is limited in time resources, professional training in the support of adults with IDD, and access to experts skilled in the capacity assessment of this population, which can hinder health care professionals in their fiduciary duties – refined guidelines are required. The preliminary ACE-IDD framework will be presented as a tool to support respect for persons, enable autonomous decision making, and facilitate just procedures during capacity evaluation of adults with IDD. By applying principles of universal design which consider the diverse needs and abilities of all persons in creating accessible and usable services, the framework will support health care professionals and their organizations to recognize and accommodate sensory, motor and communication needs, and to remove systemic, attitudinal, and communicative barriers. The ACE-IDD will be the foundation of a future tool that could be applied or adapted to multiple health care contexts or other populations, used to support assent practices, and used to support research initiatives into best practice standards.
Animal assisted therapy and just care for the vulnerable
In this paper, I explore how promoting some forms of animal assisted therapy may help address the marginalization of populations deemed vulnerable in health care -- in particular, older persons with dementia. Domestic animals, particularly dogs, have long been used therapeutically; in addition to traditional roles as helpers for visually or hearing impaired humans, they serve humans afflicted with a variety of mental health issues including ptsd, anxiety, and depression. For older persons who live alone in the community, in long term care facilities, or in hospital, companion animals often provide a uniquely therapeutic form of affection and comfort. For patients with dementia, interactions with therapy animals can enrich both quality of life and expressions of agency. While some animal rights theorists raise legitimate ethical concerns about using animals for therapeutic purposes, such relations have demonstrably substantial benefits to at least the humans involved, and may have similarly favourable impacts on the animals. I argue that with the right ethical guidance and regulatory supports, promoting some forms of animal therapy will also help build a more just health care system. This is largely because facilitating therapeutic relations between older persons with dementia and domestic animals will involve understanding, legitimizing, and encouraging forms of communication, engagement, and mutual support that are powerful (while often neglected) contributors to health -- particularly for so-called vulnerable populations. In addition, facilitating such relations will involve shifting away from a standard bioethical focus on autonomy as the unique locus of selfhood and value; at all levels of health care, guiding and executing interventions with this notion of autonomy fails populations deemed vulnerable by virtue of cognitive impairment. Thus with respect to its centralization of autonomy, the standard bioethical approach is ill-equipped to ground healthy aging strategies that demand just and respectful treatment of persons with dementia. I do not offer a positive alternative account here, but simply consider how thoughtful integration of this particular form of therapy might help promote broader progress in achieving just health for older persons with dementia. It could encourage greater attention to the psycho-social and structural mechanisms that inhibit responsiveness to dementia patients’ needs and interests as morally binding, as well as offer a practicable method of encouraging healthy and active aging among seniors while respecting animals.
The Ethics of Ending the Lives of Disabled Human Beings Before Birth: What Does a Just Society Require?
It is commonly accepted that in a just society, resources should be distributed fairly and, with regard to disabled people, that more resources should be allocated to them in order to redress any unfairness resulting from the natural lottery. This reasoning has led to assistance dogs and wheelchair accessible buildings, as well as increased educational funding for those with an intellectual disability, to name but a few examples. However, for many authors, efforts should also be made to prevent the existence of disabled people before they are born. John Rawls, for example, has said that eugenic choices should be required as a matter of justice, and Ronald Dworkin argued that genetic tests should be made mandatory. Running through much of the literature is a belief that the existence of disabled people is, fundamentally, undesirable and burdensome – for the parents who care for the disabled child, for society due to the increased costs, and, even, for disabled children themselves because they are thought to have a lower quality of life. Thus, for some authors, parents may justly have recourse to prenatal testing and abortion, preimplantation genetic diagnosis, and, more recently in the United Kingdom, mitochondrial replacement. These arguments also generally rely on the absence of the moral and legal status of the fetus. Nevertheless, and despite this lack of status, it is inevitable that there is a tension between respect for disabled people as equal members of society, and the desire to eliminate them from society. In particular, the expressivist argument holds that prenatal screening to select against disabling traits expresses a hurtful attitude about people living with the same traits. Some authors have also warned about the risk of commodification and dehumanization that result from prenatal selection. This paper will canvass the main arguments that have been made both in favour of and against ending the lives of disabled human beings before birth. It will examine how ethical analysis of this question usually addresses the interests of only one or two relevant constituencies, whereas in a just society it is essential to take into account the interests of all those concerned – including the prospective parents, the child, disabled people, and also society more generally. Whereas this may appear to lead to conflicts of interests, the paper will suggest that when all these interests are properly understood, they are more aligned than they first appear to be. This will have important practical implications for all levels of health care, and will affect the choices made by individual parents, as well as by health care providers and policy makers. With the ever-increasing list of conditions which can be targeted before birth, and the development of new technologies, including those which can allow the editing of the human germ line such as Crispr, the issue is more pressing than ever.
3D: Research Ethics (3 x 30 mins.) Show Details
Research Ethics (3 x 30 mins.)
CIHR Education Workbook: 'Ethics in research: A science lifecycle approach'
The workbook, Ethics in research: A science-lifecycle approach (http://www.cihr-irsc.gc.ca/e/48635.html), is part of the Ethics Education Project of the Canadian Institutes of Health Research (CIHR) and an integral part of CIHR’s commitment to capacity-building in ethics. The objective of the workbook is to foster awareness of the ethical issues that may emerge during the knowledge-creation-to-action continuum. The workbook provides a Knowledge-to-Action/Ethics theoretical framework and a series of case scenarios. Primarily aimed at research trainees and post-doctoral researchers in health or students in health law, the workbook is also of interest to individuals from different professions, such as physicians or nurses, or at different professional levels, such as clinician-scientists, graduate students, research fellows, or clinical fellows. The workbook may also be of interest to others, such as REB administrators and staff. A case study will be prepared specifically for this CBS annual conference, focusing on the conference topic, Just Health: Balancing Interests, Needs and Obligations. The case study will highlight the power relations that exist in the context of health research and during clinical encounters. It will be highly interactive.
Exploitations: Analyzing Problematic Treatment of Participants in "Offshored" Clinical Trials
Andrew D. Ross
Much debate about exploitation in clinical trials on human subjects focuses on “offshored” trials, where interventions primarily intended for sale in High Income Countries (HICs) are tested for safety and efficacy on human subjects in a Low or Middle Income Country (LMIC) setting. Within that context, there are two major issues concerning the design of such trials. The first controversy surrounds the use of placebo control designs in LMIC settings despite the availability (in HICs) of proven treatment for the target condition. The second controversy surrounds the ethically appropriate type and level of benefits offered to LMIC participants in offshored trials. Both issues have attracted charges of potential exploitation of LMIC participants by HIC sponsors and researchers. I will argue that the discussion of these issues in the literature has been hampered by sometimes unacknowledged and often unaddressed disagreements about the nature of exploitation. In order to clarify the situation, I draw on Jeremy Snyder’s novel typography of exploitations. On Snyder’s account, there are multiple types of exploitation, corresponding to some of the different accounts of the concept. Broadly speaking, these can be divided into “fairness” exploitation, which involves an unfair distribution of the benefits and burdens arising from an interaction; and “mere use” exploitation, which involves one party being used as a mere means, rather than an end-in-themselves, by the other party.
Principles and operational model for governing Diabetes Action Canada’s data repository for patient-oriented research.
Donald Willison, Joslyn Trowbridge; Frank Sullivan; Karim Keshavjee; Michelle Greiver
Background: Diabetes Action Canada (DAC) is developing a data repository to support research, quality improvement, and service that will improve diabetes care. At the core of the repository are de-identified but linkable electronic medical records (EMRs) from family practices that are participating in the Canadian Primary Care Sentinel Surveillance Network. In addition, we will be developing a registry of potential research participants for enrolling people into prospective studies. We set out to develop an information governance process that would engender the trust of patients and the health care providers that these EMR data were being managed responsibly in the best interests of patients living with diabetes. Methods: We conducted an extensive literature review to inform the development of a principles-based governance framework and operational model. Papers were managed and analysed using NVivo version 11 software. We are currently conducting key informant interviews in up to 6 organizations, to determine how Canadian and global leaders in developing data safe havens have instantiated these principles. We will use this to inform our practice. Results: Our literature review uncovered some papers that articulated principles for data governance but these were mostly focused on technical aspects (e.g. data security and data quality). Turning to broader business and political science literature, we identified eight values-based principles to guide our governance model: 1. transparency; 2. accountability; 3. following the rule of law; 4. integrity of purpose, science and ethics; 5. participation and inclusiveness; 6. impartiality and independence; 7. effectiveness, efficiency and responsiveness; and 8. reflexivity and continuous quality improvement of process. In the presentation, we will describe how these principles are being designed into the governance process. For example, consistent with the principle of “participation and inclusiveness”, patients represent half of members on the research governing committee and HCPs 20%. The remaining members are content experts in: research methods, ethics, law, and privacy. Patient and HCP representatives on the Committee also liaise with their own respective patient and data provider advisory groups from which they were nominated to the Committee. Further, applications for access to data will be scrutinized for involvement of patients and HCPs in the research, as appropriate, and for patient-focused outcomes. The literature review of empirical examples information governance processes revealed a rich literature describing governance issues encountered and approaches to managing these. From this, we have identified six particularly innovative sites internationally to conduct key informant interviews. Findings from these interviews will be presented. Conclusions: To earn and maintain patient and HCP trust, information governance must go beyond compliance with formal regulations to ensure a ‘social licence’ for the use of the data. The DAC data repository and patient registry will accomplish this through a focus on research that is scientifically sound, ethically robust and in the public interest.
3E: Strategies in Medical Ethics / SEED Model (2 x 45 mins.) Show Details
Strategies in Medical Ethics / SEED Model (2 x 45 mins.)
Heuristics, errors, and forcing strategies in medical ethics
Francis Bakewell, MD
In cognitive science, the theory of heuristics suggests that much of our decision-making relies on rapidly applying mental models and rules based on our prior experience, rather than slowly and deliberately thinking about every new situation as it arises. ‘Fast-thinking’ can be beneficial, especially when decisions are time-sensitive. However, it is also particularly prone to bias, and this bias can lead to cognitive errors. Cognitive forcing strategies are attempts to use equally fast template thinking to catch and correct these errors. These concepts have been eagerly embraced in medicine to explain why some medical errors occur. For example, clinicians often use pattern recognition to quickly scan an x-ray for signs of a fracture, rather than painstakingly examining every bone in detail. While efficient, this fast approach is prone to the error of ‘search satisficing,’ where the investigation is stopped as soon as a fracture is found, while other, subtler fractures may get missed. As a cognitive forcing strategy, clinicians are often taught that ‘the most commonly missed fracture is the second one,’ to remind them to keep looking further. While these concepts have thus far only been applied to clinical decision-making, this presentation will suggest that similar heuristics and errors exist in medical ethics, and propose potential forcing strategies to overcome them. Some errors have been previously documented in psychology and the social sciences and have an inherently moral element, such as the fundamental attribution error (overestimating the influence of a person’s character on their behaviour, rather than external factors), or psychic numbing (an emotional indifference to the suffering of an individual when there are many others suffering similarly). This presentation will apply them explicitly to medical ethics and give examples of strategies to overcome them. Other errors are inspired from the existing clinical literature on heuristics, and this presentation will uncover their ethical analogues and propose simple and effective forcing strategies. For example, the aforementioned search satisficing may manifest in ethics as the tendency to stop seeking informed consent when a patient has only provided assent. Here, an ethical forcing strategy might consist of routinely requesting a patient to explain a plan back to you whenever your proposal is simply accepted with no questions asked. Just as medical errors are often the result of fast and inadvertently biased decision-making rather than ignorance, so too are ethical errors in clinical practice. This presentation will review the theory of heuristics, apply it in a systematic way to understand and remedy ethical decisions in clinical practice, and set the groundwork for a taxonomy of common ethical heuristics, errors, and forcing strategies.
Sowing the SEED for patient empowerment: A supportive decision-making framework
Anita Ho, Kim Jameson, Soodabeh Joolaee, Daniel Buchman, Sung Joon Shin, and Arnold Eiser
Background: In recent years, emphasis on shared decision-making models has aimed at empowering patients as partners with their clinicians when contemplating between two or more treatment/care options. This approach places responsibility on each party to share information, with the clinician providing information and decision-aids to educate the patient on viable clinical options and the patient providing information concerning their preferences, beliefs and values, to arrive at a joint-decision on a patient-centered care plan. Often lost in the decisional process are patients’ emotions, goals, priorities, relational contexts, and preferred modes of decisional engagement. Informed by the qualitative study funded by the Canadian Institutes of Health Research “Supportive Decision Making for Diverse Populations” that took place in Vancouver and Toronto between 2012 and 2016, we present a SEED model as a relational framework to support patient/family decision making. Methods: Informed by grounded theory methodology, the first phase involved interviews with 86 patients, 41 family decision makers, and 41 health care providers on their views of facilitators and barriers to supportive decision making. The second phase involved the development of the SEED model and accompanying “tips and resources,” based on the analysis of findings across all of phase one interviews and an extensive review of the literature and other health care decision-making models and guidelines. Subsequent feedback elicited in three separate focus groups with four nurses, four Indigenous health service providers, and nine allied health professionals, as well as eight individual physician interviews, helped to refine the model and accompanying material. Results: The SEED model seeks to incorporate shared decision-making approaches at the patient-provider level, while also taking into account the space, place, and relationships that may be shaping the client’s decisional context. By 1) Seeking collateral information, 2) Engaging in conversations, 3) Exploring preferences and options, and 4) Deciding with patients and support persons accordingly, the SEED model can help clinicians work with patients and their loved ones to clarify their goals and priorities prior to offering specific advice. It also aims to address system-level gaps by encouraging an interprofessional approach to coordination of care across and within systems of care. Using dialysis as a case example, this presentation will illustrate the SEED model using an online application as a tool for healthcare providers. Conclusion: The SEED model provides an iterative guide to address patients’ health literacy, broad and specific health care goals, emotional and relational considerations, and other contextual factors framing their engagement and decisional interests, all of which are essential to patient empowerment.
3F: Balancing Interests (2 x 45 mins.) Show Details
Balancing Interests (2 x 45 mins.)
Balancing Competing Interests and Justice-related Obligations in Mental Health Care Policy and Practice
Mental health care providers (MHCPs) often find it challenging to: 1) simultaneously perform their multiple roles, 2) recognize, and respond appropriately to, the legitimate needs and interests of their patients, and 3) meet all of their varied professional obligations. It is important that they get the necessary weighing and balancing ‘right’ because of inherent, significant justice implications. From a social justice perspective, there is large subset of patients, i.e., persons with severe and persistent mental illness, who meet the criteria for designation as an oppressed/disadvantaged social group as proposed by Iris Marion Young and other theorists. The usual under-resourcing of mental health care delivery complicates the decision-making context for MHCPs, health care organizations, and governments with additional elements of traditional-distributive, formal, and procedural justice. In complex mental health care circumstances, both the roles of MHCPs, and the interests of patients vs. those of society, may conflict leading to the emergence of competing, professional obligations. For example, the duty to maintain the confidentiality of a patient’s personal health information may be in conflict with a MHCP’s responsibility to protect the safety of the patient and/or others. In the mental health domain, there is no accepted, lexical ordering of MHCP obligations, or of the ethics principles and values that underlie them, that applies to every set of clinical circumstances. Simplistic analysis of which prima facie duty takes precedence over another is often inadequate, as an optimal response to the inherent complexity of the circumstances typically requires that a number of obligations be partially met simultaneously. In clinical practice, MHCPs need to identify what their obligations are, and then determine whether these responsibilities are in conflict with one another. If tension exists, they are required to effectively weigh and balance these obligations so as to discern what actions should be taken in the particular circumstances. While it is recognized that decision making in some mental health care contexts is adequately informed by existing sets of rules and/or guidelines, e.g., the accepted, criteria-based approach to ‘duty-to-warn’ scenarios, other complex mental health care domains are not so well informed and guided. In this paper presentation, the author suggests that MHCPs, health care organizations, and governments could benefit from the development and use of targeted decision-making approaches that are intended for practical application in specific, challenging mental health care circumstances. Two sample mental health care domains are explored in order to demonstrate how a targeted approach in each of these contexts could facilitate the just and effective weighing and balancing of competing obligations. At the micro-level, a novel conception – a ‘relational space of optimal mental health care engagement’ – is proposed as an approach to what has traditionally been referred to as professional boundaries work. At the meso/macro-levels, a ‘deliberative-engagement policy development’ methodology is introduced and applied to the theoretical establishment of policy and regulations for medical assistance in dying in those clinical circumstances in which profound suffering arises directly from the experience of a mental health disorder(s).
Wanted: Ethical Discernment for Balancing Interests, Needs and Obligations
On February 6, 2015, responding to a challenge from the Canadian Charter of Rights and Freedoms, the Supreme Court of Canada (SCC) struck down Criminal Code prohibitions against medically assisted death for a competent adult who consents and has a grievous and irremediable medical condition that causes enduring and intolerable suffering.The decision is widely accepted as a triumph for justice and individual rights and has been rapidly normalized. Deeper ethical analysis of this paradigm shift in medical practice and health policy reveals serious challenges for bioethics regarding promotion of ethical/moral sensitivity to the complexity of human suffering and protection of the vulnerable and education for medical professionalism . Bioethics is also challenged tofoster the ethical/moral courage necessary to critically assess the profound implications ofhealth policy which fails to promote health equity.
Bioethics now carries a special obligation for the promotion and development of ethical sensitivity and moral courage because of the medical profession's acceptance to be agents of medically assisted death. This acceptance can be traced from the Hippocratic tradition, which prohibited doctors' from prescribing deadly drugs, and the emergence of medical professionalism and codes to modern bioethics. The tradition acknowledged the moral core of medicine which brings the advances of science to the vulnerable sick and suffering and commits to maximizing scientific benefit and minimizing risk and harms. Claims of the impossibility of a morality internal to medicine, suggesting its ends are totally socially and legally constructed, the rejection of the treatment enhancement distinction, the commercialization and commodification of medicine and health careand finally, the Canadian Medical Association’s approach to responding to the SCC decision based, not in its Code of Ethics and values, but a “principles-based approach” dominated by respect for autonomy, dramatically demonstrate insurmountable challenges for the reconstruction of medical morality.
Thus, medical ethics has been replaced by bioethics, dominated by the primafaciae, principles-based approach of Beauchamp and Childress. Erroneous prioritizing of respect for autonomy and the de-linking of beneficence, non-maleficence and justice from their Hippocratic roots promote the consumer model of the physician-patient relationship, which is embodied in the SCC decision. Here, the doctor provides information, assessescompetence and is a technical expert in achieving death. Medical professionalism is reduced to professionaletiquette. Attention to the vulnerability inherent in health care and decision making, so evident in meaningful ethical consultation, has been lost.However, bioethics is now dominated by clinical ethics focusing on procedural agreement and complex issues of consent and eligibility for MAiD, rather than deeper discernment of the issues underlying the requests, including the vulnerability from health inequity related to the socio-economic determinants of health today.
Medically assisted death raises deep questions about medicine, technological responses to human suffering, the nature of vulnerability and the bioethics project itself. Bioethics’ capacity for probing deeper questions of meaning and justice is needed more than ever. Is it up for the task?
3G: ELSI / Transnational Surrogacy (2 x 45 mins.) Show Details
ELSI / Transnational Surrogacy (2 x 45 mins.)
Co-constructing the ethical, legal and social implications (ELSI) of epigenetics with disability theorists
Katie Saulnier, Charles Dupras, Yann Joly
Epigenetics is the study of mechanisms that influence and modify gene expression. Among its branches are environmental and social epigenetics, examining respectively how environmental factors and early life experiences cause epigenetic alterations. Epigenetics is becoming increasingly relevant to conceptions of justice in health, as these changes are potentially both heritable and reversible, engaging questions of intergenerational justice, responsibility for both individual and public health, and access to prevention and treatment. Some of the ethical, legal, and social issues (ELSI) issues generated by epigenetics will differ contextually from those that arose during the genomic era. As our understanding of human health grows to encompass the biological and the social not only as separate determinants, but as intersecting factors with significant impacts on one another, we are seeing an increasing number of publications discussing these issues. In a recent systematic review of epigenetic ELSI scholarship, we identified nine broad emerging themes in the literature, including: the biologization of the social; issues in the areas of reproduction and the family; and the risk of stigmatization, discrimination, and eugenics. We found articles drawing not only from the expected areas of Science, Technology, and Society (STS) and Bioethics, but also from fields as widespread as Anthropology, Geography, and Literary Studies. However, one perspective from which this scholarship could benefit greatly is strangely absent: that of critical disability theorists. Looking at the results of our systematic review through the lens of related disability theory frameworks, this presentation will examine the core themes at the intersection of these fields, the areas in which they are uniquely positioned to inform each other, and strategies for facilitating an ongoing conversation between traditional academic disciplines and critical disability theorists as they collide at the intersection of health and justice. Disability critiques of the medical and deficit models of health interrogate our preconceptions of what it means to be “well”. For instance, epigenetics scholarship frames markers associated with disease as physical embodiments of environmental “harm”, but does not sufficiently engage with concerns about the stigmatization generated by cure rhetoric. Other problems raised by epigenetics ELSI researchers that could benefit from these frameworks include the embodiment of the social and the degree to which the human body can or should be studied separately from its environment; the attribution of “blame” to mothers for personal behaviours that impact their offspring’s health; and the intersection of health with poverty, race, and gender. Just as epigenetics scholars should heed the groundwork laid by the disability theory community, disability scholars must also engage with emerging epigenetics research in order to understand the changing perception of disability outside their own field, in health research, policymaking, law, and the media. Challenges frequently encountered by disability theorists, such as the standards by which a society designates and interacts with bodies that fall outside a given definition of “healthy” or “normal”, will evolve as new epigenetic evidence on biological/social interactions emerges, and this “epigenetic revolution” may necessitate modifications to existing critical frameworks.
Exploitation, Agency, and Domination in Transnational Surrogacy
Danielle M. Wenner, Derrick F. Gray
In much transnational reproductive travel, the prospective parents are from high-income countries, while surrogates are relatively poor women in low- and middle-income countries. These background inequalities, together with gender disparities within surrogates’ home countries, raise concerns about the exploitation of surrogates by both the agencies employing them and prospective parents who hire them. Much of the dialogue about transnational surrogacy is framed in terms of the surrogate’s autonomy or the potential unfairness of surrogacy transactions. In this paper, we argue that another conceptual tool can and should be used to ethically assess this practice, specifically, freedom as non-domination. This tool both avoids some of the troubling conclusions generated by accounts that look to failures of autonomy or transactional fairness, while also shifting our attention towards non-transactional features that are relevant to a moral assessment of the practice. We begin by examining accounts of exploitation that have been brought to bear on discussions of transnational surrogacy. One strong conception of exploitation centers on autonomy, calling a transaction exploitative only if it involves both an unjust distribution of the benefits from transacting and a failure or defect of consent on the part of the exploited party. We argue that this approach commits one to troubling claims about the agency of potential surrogates. We go on to consider a weaker conception of exploitation that refers only to the unfairness of resulting distributions in assessing transactions. While this approach to exploitation in surrogacy is more tenable, it leaves those wishing to assess the potentially for exploitation in the difficult position of needing to specify a fair payment for reproductive services. This difficulty has led some to dismiss exploitation as the appropriate measure by which to assess the practice. Instead, we present an original account of fairness in transactions that can give a definitive assessment of transnational surrogacy and demonstrate that the majority of consensual transnational surrogacy contracts are not, in fact, exploitative. Finally, we introduce the notion of freedom as non-domination and argue that this relational conception of freedom is better equipped to identify the ethically relevant features of transnational surrogacy contracts. First, we show that this account sidesteps concerns about agency entailed by the stronger conception of exploitation. Next, we demonstrate that the transactional fairness demanded by the weaker conception of exploitation is insufficient to ensure that parties to surrogacy agreements are free in the ethically relevant sense. Thus, even if the account of exploitation we offer withstands scrutiny, a lack of exploitation within surrogacy agreements would not imply no further reason for ethical concern. Finally, we highlight how a focus on freedom as non-domination shifts attention away from concerns about transaction-specific elements and towards what we might call “macro level” unfairness. If we are strongly committed to a view that locates all morally relevant features of a transaction within the parties to and terms of that interaction, we will be unable to account for a great deal of structural injustice. The ability to reflect relational injustice requires an alternative framework.
|12:00 pm - 2:00 pm||
Lunch, CBS Annual Meeting and Award Presentations Show Details
Lunch, CBS Annual Meeting and Award Presentations
|2:00 pm - 4:00 pm||
4A: 60 min. Panel - Organ Donation & Concurrent sessions (2 x 30 mins.) - Public Health Show Details
60 min. Panel - Organ Donation & Concurrent sessions (2 x 30 mins.) - Public Health
Deceased Donation from the Currently Conscious Patient- Ethics Recommendations in the Canadian Context
Marie Chantal Fortin, Julie Allard, Vanessa Gruben, Daniel Buchman, James Downar, Sherri Yazidi, Aviva Goldberg
As a result of recent legislation in Canada and the province of Quebec, patients suffering from terminal illnesses may now seek medical assistance in dying (MAID) as a means of ending their lives under the supervision of a doctor. One implication of having patients actively participate in their end-of-life planning is that they are able to provide first person consent for, and may even request, organ and tissue donation. Prompted by individual case discussions and on the recommendation of the Canadian Blood Service Deceased Donation Advisory Committee, Canadian practitioners have requested guidance on how to manage organ donation in these conscious competent patients. In response to this request, Canadian Blood Services, in collaboration with the Canadian Critical Care Society, the Canadian Society of Transplantation, and the Canadian Association of Critical Care Nurses, has undertaken this initiative to provide ethical, legal, and clinical guidance on the topic of organ and tissue donation for conscious competent patients. Leading practice recommendations were developed for clinicians, donation program/ODO administrators, and policy makers regarding organ and tissue donation for a conscious and competent patient . This presentation will focus on the ethics recommendations that resulted from this consultation. We will examine several components including: The results of a public consultation (1008 respondents) of attitudes towards organ donation after medical assistance in dying and from the patient who has chosen to withdraw life sustaining therapy (WLST) Scoping reviews of the current legal framework in Canada and other jurisdictions Scoping review of the issue of conscience based objections to participation The final recommendations on issues including: Is it ever ethical to consider deceased organ donation after MAID or from the currently conscious patient? Should only patient initiated requests be considered or should this option be offered to everyone considering MAID or WLST When in the MAID process should organ donation be discussed and by whom? Should recipients be informed of the manner of death, either at the time of organ offer or through pre-consent? Should institutions or individuals on the transplant team be allowed to withdraw themselves from participation on the basis of conscience based exemption? How should health care teams, donors, recipients and their families be ethically supported in throughout the transplant process? What are the research priorities for empiric ethics research in this area? At the end of this presentation, participants will better understand where we are on this issue (as ethicists, as health care providers and as a society) and where we see this issue progressing.
Australia’s private health insurance regulatory framework: implications for justice
Fiona McDonald, Helene Jacmon
Australia is unique in creating a regulatory framework to, through the use of incentives and penalties set out in legislation, encourage citizens to purchase a commercial product, private health insurance (for inpatient hospital care in private or public hospitals). The regulatory framework was progressively designed to reverse a sharp decline in levels of private health insurance coverage after the introduction, in 1984, of Australia’s universal public health system, Medicare, which provides free in hospital care for medically necessary services. The key justifications for the regulatory framework were claims that it would enable people who held private health insurance: to seek treatment in private hospitals reducing the load off the public system and making that system more sustainable; give choice of health provider and of timing of treatment. This presentation describes the reasons why the regulatory framework was introduced and the elements of the regulatory framework. It analyses the implications of each element and the framework as a whole in regard to justice concerns, focusing on whether all citizens can both equally access the product and enjoy any benefits that may accrue from it. It is argued that access and enjoyment may be effected by socio-economic status, place of residence, and ethnicity, especially for Indigenous Australians, amongst other factors, so that the private health insurance regulatory framework is more beneficial for some members of society than others. Australia’s experience provides useful lessons for Canada should it allow and subsidise private health insurance for medically necessary services.
Epistemic Problems in Nutrition Research
Cardiovascular disease, cancers, diabetes, stroke, respiratory disease, and Alzheimer’s disease, are among the leading causes of death in Canada, claiming over 200,000 lives each year (Statistics Canada Report 2014). Evidence in favour of whole-food plant-based diets as a way to not only treat, but also prevent and reverse many of these diseases, is growing (Hever 2016; Campbell 2017; Trapp & Levin 2012; Patel et. al. 2017); and plant-based diets are gaining support from physicians, nurses, nutritionists, and scientists, worldwide. Why, then, is there such strong resistance to the shift away from animal-based diets in favour of plant-based ones? I will argue that part of the answer to this question lies at the heart of nutrition research, which is shrouded with epistemic problems that create confusion about what evidence to privilege and who to believe. The dire implication is that the public lacks access to reliable information about nutrition, and they are deprived of proper education and optimal access to nutritious foods. As a result of poor nutrition, many people risk dying of preventable diet-related diseases (Campbell & Campbell II 2016; Gregor 2015; Barnard 2017). We face an issue of social justice. This paper has four parts. In Part I, I will expose the complex terrain of nutrition research. To do so, I will present a range of evidence in the form of case studies, randomized control trials, epidemiological studies, etc., all with varying results and recommendations about what diets to follow, and what foods to eat and avoid. In Part II, drawing on the work of bioethicists, I will assemble a list of principles by which to evaluate research practices and evidence (Borgerson 2009, 2016; Goldenberg 2013). In Part III, I will reveal epistemically suspect nutrition research, focusing on the cases of soy, chickens’ eggs, and cows’ milk. I will identify the influence of egg, dairy, and meat industries in not just influencing but monopolizing the field of nutrition research, compromising the quality of research that is published and imparting a false perception that all evidence is equal (Barnard 2017). In Part IV, I will build upon solutions offered by others about how to encourage the shift toward educating people, including healthcare professionals, about the benefits of a plant-based diet (Tuso et. al. 2013; Hever 2016). I hope to offer three significant contributions. First, I wish to equip us – as philosophers, bioethicists, healthcare practitioners, and consumers – with analytical tools to differentiate between qualities of research in the field of nutrition. Second, I hope to encourage us to resist the influence of animal agricultural and pharmaceutical industries in nutrition research by applying our knowledge of research ethics to this field. Third, I issue a call to action for bioethicists to take an active role in influencing public health policy, in the interests of Canadians. We can help to improve the health and wellness of millions of people by promoting nutritious diets that are supported by high-quality studies and subject to strict evidential scrutiny.
4B: Clinical Ethics (2 x 30 mins.) Show Details
Clinical Ethics (2 x 30 mins.)
Finding Hope in Futile ICU Cases: A Narrative Analysis
Background Hope is highly individualized and shaped by personal values. As an Aristotelian virtue, hope is something to be conscientiously chosen as a habit of behavior and mental response. Often hope in an ICU setting is limited to focus mainly on death-denying and not life-affirming, by the different role players (healthcare team, patient and the family/surrogate(s)). The ethics of hope has often been understood as a conflict between duties, which places healthcare professionals at the side of realism and often patients (or their family/surrogate(s)) at the side of hope. The aim of this narrative analysis is to illustrate how an evaluative process of hope, as a clinical ethics skill, can contribute to better communication between those often seen as having opposing views. This paper draws on the aspects of hope form a theoretical base (Tversky and Kahneman’s “Framing effect”) which will inform the reader that a change in focus from disease related choices to decision related choices, can positively influence hope and a good outcome for all concerned. Methodology Narrative analysis refers to a subset of qualitative research designs in which stories are used to describe human action. These stories are based on reflections of the author during family meetings while working in the MICU unit of a cancer institution. Results As is frequently the case in the ICU, patients lose their ability (due to degenerative disease progression) to participate in goals of care conversations. Surrogate decision-makers are often burdened by making decisions in the light of a lack of any clear Advanced Care Directives. Often these surrogate decision-makers associated hopelessness with past losses, such as the loss of health, income, or significant others (other close family members), and despair with future losses, which included the possibility of losing the future or person him/herself. The emotional distress exhibited by surrogates have been well documented and the conflict of a definition of appropriate hope often leads to misinterpretation and leaves unexamined relational dimensions. Decision-making about termination of futile treatment often presents a difficult ethical dilemma not only for the healthcare team but also for the patient’s surrogate decision-makers (provided he/she is not able to communicate). The cases to be presented all indicate that it is often a distorted informed hope that keeps surrogate decision-makers from reaching decisions. Conclusion The narrative analysis illustrates that hope as a concept with different characteristics connected to it, has the ability to aid the healthcare team to address often difficult communication situations with surrogate decision-makers. It is demonstrated how the understanding and redefinition of hope can be developed as a clinical skill in an ethics consultation, to aid value laden discussions. Evidence indicates that end-of-life decision outcomes improve where healthcare teams value statements given by patients and family members.
Are ' Hi - Tech ' treatments in the neonatal intensive care unit ( NICU ) ethical? A comparison of three NICU infant populations in a Canadian NICU.
Brendan Leier, Karen Foss, Denise Clarke
The story of Neonatal Intensive Care is one of extraordinary success over the past four decades. Rates of survival of critically ill infants are remarkably high across a broad spectrum of gestational ages and life - threatening illnesses. Today survival of the majority of premature infants now approach that of full - term infants in countries with full NICU capability. In addition mature infants born with severe life threatening congenital anomalies also have high rates of survival. A third population of infants being admitted into NICU with increasing frequency during the last 10 years are infants experiencing neonatal withdrawal syndrome ( NAS ). This trend has been associated with an epidemic of opioid use in North America, including use by pregnant women. The concept of borderline neonatal viability, indicating the possibility of infant survival after birth, is generally considered when a woman experiences very premature labour and imminent childbirth. In the 1970s neonatal viability was considered to be around 27 weeks gestation ( with birth weight 1000gm approximately ). Decisions regarding the attendance of NICU staff at a birth for the purpose of resuscitating the newborn infant were made routinely on this basis alone. The women who presented in labour below this gestation were informed that the baby was too premature to survive even with full resuscitation and NICU treatments. In crude terms there was no availability of necessary medications or of small enough Intravenous lines and plastic airway tubes to support these tiny fragile infants successfully beyond a few hours of life. Today the survival of these infants is virtually the same as infants born at full term due to the technology development ever the past 40 years. In Canada today this ' threshold of viability ' is close to 22 weeks gestation. Today the decision to have NICU staff attend such a birth includes multiple other factors beyond gestational age and birth weight. These factors are derived from multiple databases and studies of survival rates with sophisticated statistical analyses revealing the significant maternal, foetal, and other variables affecting survival. The dramatic shift downwards in gestational age at which ' viability ' is accepted in Canada today has been made possible by the ongoing development of an array of new technology and medications supporting these fragile newborn infants. Similarly the availability of prenatal diagnosis of the majority of serious foetal congenital anomalies, has facilitated birth in a perinatal center with availability of NICU surgical and medical treatments to support these critically ill newborn infants. The result is a dramatic increase in survival of infants previously considered to have lethal conditions including complex anomalies of the heart, brain, lungs, intestine, and kidneys. Many such infants have multiple such anomalies. The Canadian Paediatric Society ( CPS ) has a Position Statement entitled ' Counselling and management for anticipated extremely preterm birth ' which was updated in 2017 and which emphasizes ' strategies to communicate effectively with parents ' in this situation. There is no CPS statement with respect to counseling of prospective parents when major congenital anomalies have been diagnosed on prenatal ultrasound. A standard approach to this problem is to convene a multi - disciplinary case conference at which all the medical and surgical specialists give expert opinions on the available treatments, prognosis etc. These case conference discussions tend to be heavily medically oriented towards the prenatal imaging results and other prenatal testing. There has been a clear trend towards increasing rates of treatment including prenatal interventions, in keeping with more sophisticated prenatal imaging and dramatically improved neonatal treatments. By contrast the care of infants with NAS has not changed significantly over the past two decades. These infants are generally identified at birth due to the prenatal history of opioid exposure and anticipated to develop NAS. The standard approach is to await NAS development and then treat the infant in moderate or severe withdrawal with medication in NICU. The infant is medicated for up to several weeks before being discharged home from NICU. Using this approach many infants are not discharged home in the care of the mother. These infants contrast markedly with the above two infant groups in that they do not require ' High - Tech ' investigations or treatment. Yet they are a very challenging group of infants to care for as they frequently have complex associated family, social and economic disadvantages. In addition the mother has an ongoing opioid requirement after birth which must be considered by the infant caregivers. At the Grey Nuns Hospital in Edmonton we have successfully established a program of prenatal and post natal care for these infants and mothers which has been successful in keeping the mother - infant dyad together through NAS. This program is also associated with significantly less NICU admission, higher breast feeding rates, and higher rates of discharge home in the care of the mother. Despite this success, the majority of infants born in Alberta with NAS continue to be managed by awaiting NAS development and admission to NICU. Our presentation will explore the ethical implications of this differential approach to care of these groups of neonates. We will explore our ethical concerns about disproportionate care among these three groups in the context of neonatal specialists being most attuned to infants requiring ' high tech ' treatments. The major focus on such infants both pre and post natally is to the potential detriment of other at risk newborns including those with NAS.
4C: Resource Allocation / Equity / Public (4 x 30 mins.) Show Details
Resource Allocation / Equity / Public (4 x 30 mins.)
Questions of procedural and restorative justice relating to deployment of genetically modified mosquitoes for malaria elimination in developing countries
Malaria remains a global threat. In 2015, there were 214 million cases of malaria, 438,000 deaths, mostly of children, and at this moment nearly half of the world’s population are at risk of contracting malaria due to globalization and travel (WHO). The introduction in 2012 of a gene editing technique called CRISPR, or Clustered Regularly Interspaced Short Palindromic Repeats, enabled unprecedented efficiency and reliability in making precise, targeted changes to the genome of living cells, and to do so faster and more cheaply than ever before. Just a couple of years later, in 2014, researchers at MIT announced they had discovered a way to use CRISPR/Cas9 to ‘drive’ almost any genome alteration through sexually reproducing populations to virtually all offspring. What this means is that humanity not only can alter an individual organism’s genome in almost any way we can conceive, but we could alter an entire species population’s genome with almost the same ease. This capacity holds the promise of allowing us to address several major world problems, including the spread of insect-borne diseases (Esvelt KM, et al. 2014. Concerning RNA-guided gene drives for the alteration of wild populations). Genetically modified mosquitoes (GMM) carrying a malaria resistant gene drive constitute an emerging technology which promises to be a more powerful and efficient tool in the fight against malaria than any before, especially important as our current methods for fighting the spread of malaria--drugs and insecticides-- are quickly losing efficacy as their targets develop resistance to them. For all its promise, the prospect of GMM deployment raises many challenges of how to balance the promise of this technology against the uncertainty and risk inherent in its, thus far, untested use. One of the key ethical challenges we face is to define the obligations of the researchers and funders to the communities resident in the areas chosen for GMM release. As deployment of GMM for malaria elimination would be a public health intervention that does not act directly on humans, there are questions around whether it should be considered human subjects research. Moreover, even if it were human subjects research, it would be impossible to garner consent from every individual who may be affected by such a deployment. I argue that, taken broadly, GMM release should not carry all of the obligations of human subjects research. Nonetheless, possible obligations relating to procedural justice and, depending on the outcome of GMM release, restorative justice must be explored and defined. I will discuss obligations of this kind as they relate to GMM deployment.
Should We Pay? The Ethics of Plasma Donation in Canada
Lisbeth W. Nielsen
In this paper, I examine Voluntary Non Remunerated Donation (VNRD) versus paid donation as means to achieve national self-sufficiency in ‘source plasma’ supply, using Canada as a case example. In Canada, as well as in other World Health Organization member countries, the demand for source plasma is growing rapidly. ‘Source plasma’ is plasma used for the manufacturing of plasma products such as Factor VIII and IX Concentrates, Albumin, and Rh Immune Globulin. These various products are used to treat patients with bleeding disorders, immune disorders, and other rare diseases. Currently, most WHO member countries, Canada included, rely on importation of plasma products from manufacturers in other countries, who collect source plasma from paid donors. Safety and availability of blood and blood products, including plasma, has been among the general priorities of the World Health Organization since 1975. At the heart of WHO’s strategy for blood safety and availability is for national authorities to adopt health policies with the goal of ensuring self-sufficiency in safe blood and blood products based on VNRD and to implement strategies to achieve this. According to WHO, the ethical rationale for a blood system based entirely on VNRDs is threefold: (a) it protects the ‘right to give’, (b) it protects against commodification of human body parts and fluids, and (c) it upholds principles of justice by protecting vulnerable population groups from exploitation. In February 2016, a private for-profit company opened a pay-for-plasma collection clinic in Saskatoon. Donors can give plasma once per week and are paid up to $50 onto a non-transferable visa card for each donation. The company has a license from Health Canada to collect and sell plasma in Canada and plans to open up several plasma collection sites across Canada. This recent development suggests that Canada is moving away from a voluntary non-remunerated donation system in order to address the scarcity in supply of source plasma from Canadian donors. This is contradictive to the World Health Organization’s policy on safety and availability of blood and blood products which Canada has committed to through their membership. I begin by examining the benefits of national self-sufficiency in source plasma supply and the barriers to achieving this within Canada’s voluntary non-remunerated blood donation system. Next, I demonstrate why the patchwork system that is currently developing in Canada does little to address the barriers to achieving national self-sufficiency in plasma supply. I then discuss the ethical implications of addressing Canada’s shortage of supply in source plasma by combining the existing system with a commercial plasma collection. I argue that the primary ethical concerns with commercial plasma collection in a Canadian context is with upholding the principles of justice in terms of protecting vulnerable donor populations from exploitation, and with protecting the ‘right to give’. I conclude that the barriers to national self-sufficiency may be overcome without calling for a shift from a system based on 100% voluntary non-remunerated donations towards one that includes paid donations on large scale.
An ethical analysis of resource allocation on the front lines of the Canadian healthcare system: A case study from orthopaedic surgery.
Alex Cull, Timothy Christie, Josh Mayich
This paper examines the issue of resource allocation in the context of health care professionals delivering services on the front lines, with an emphasis on the use of discretionary authority. We argue that ethical resource allocation requires front line health care professionals to appropriately include considerations of “value for money” when they exercise the discretionary authority that society has entrusted them with. We will conclude that working within a publicly funded health care system imposes the duty to secure, when appropriate, “value for money” for the health care system. To develop this argument, we will use an example from orthopaedic surgery as a case study. During surgery for the reparation of stable intertrochanteric proximal femoral fractures (IPFFs), surgeons often use an intramedullary device (IMD) rather than a sliding hip screw (SHS) even though the two devices can achieve comparable patient outcomes and the SHS is significantly more cost effective than the IMD. According to the literature, the reasons surgeons elect to use the IMD rather than the SHS are discretionary, i.e., for reasons unrelated to medical considerations, scientific evidence, patient outcomes, or considerations of “value for money.” This analysis is not an analysis of orthopaedic surgeons per se; rather it is an analysis of the use of “discretionary authority” by front line health care professionals. We will conclude that “value for money” should be a prominent consideration when front line providers, such as surgeons, utilize “discretionary authority.”
What role should sustainability play in bioethics?
Sustainability plays virtually no role in bioethics. This seems surprising, given the common definitions of ‘bio-ethics’ as involving discussion of ethical issues relating to life. There are a number of possible reasons for this neglect. First, it, perhaps, reflects the dominance of medical ethics in thinking about bioethics, and therefore certain influential values (most obviously, autonomy). Second, ‘sustainability’ is, arguably, a vague concept and its relevance to bioethics is obscure. Third, however we choose to define sustainability it seems to push towards taking others into account both spatially (across the global) and temporally (future generations). Much bioethics, with its individualistic focus, seems uninterested in and ill-prepared to meet this challenge. In this paper, I seek to clarify and articulate an account of sustainability that is relevant to bioethics. My argument is that once sustainability is clarified as implying an obligation to not unthinkingly use resources when available, but to think of any resources as being something to be shared, it can be seen to be a necessary feature of bioethics. On this view, sustainability is related to, but distinct from ideas of justice. I illustrate the argument by showing how sustainability can be used in two cases. First, in the use of drugs in the face of growing antimicrobial resistance. I argue that sustainability can be seen to be a vital concept to use in relation to both clinical restraint in the use of these drugs and policy development in global agricultural and health policy. Second, I explore how sustainability can be uses in more general discussions of the use of resources within health systems. Too often it is assumed that any resource distribution should be conducted at a single set point in time, ignoring the possibility that (at least some) resources may be used more effectively in the future.
4D: End of Life Care (4 x 30 mins.) Show Details
End of Life Care (4 x 30 mins.)
Dancing with Broken Bones: Poverty, Race, and Spirit-filled Dying in the Inner City
David Wendell Moller
"We have been disregarded, cast aside, and forgotten about," a beleaguered Mr. Wheeler declared. He was speaking of his experience of dying poor in the urban setting and the indignities that surrounded it. He lamented specifically poor communication, a lack of understanding of who he was as a person by his caregivers, and a perception of personal insignificance in a system he both distrusted and resented. His feelings led to deep-seated mistrust and anger and exacerbated his suffering in palpable ways throughout the years that his dying process took. The situation of Mr. Wheeler is not isolated, unfortunately. Many patients who live and die at the margins are challenged by disempowerment and misunderstanding, as are their loved ones. As a result, the poor and others who live life at the fringes often suffer greater distress throughout serious illness and dying. This presentation will utilize original community-based ethnographic research and the tools of oral and photographic narrative to present a portrait of what is like to live and die in urban poverty. It will describe how the intersection of economic and racial disenfranchisement with the end of life leads to suffering few can imagine. it will also chronicle how patients and loved ones, despite enormous complexities and challenges, draw on faith and social support that enables them to face dying with remarkable and often unappreciated resilience. The presentation, again by drawing directly upon the stories of patients and loved ones, will also argue that those who work in the healing professions have a special obligation to develop skills in cultural humility and competence so as to optimally serve the needs of vulnerable populations.
Halachic Law: Demanding open, transparent and nuanced ethical engagement in end-of-life care
When substitute decision-makers (SDMs) make decisions about treatment based on Halachic Law, it can be difficult for the clinical team. Team members may view deference to Halachic Law as an inappropriate application of SDM preferences to patient care. Yet, a patient has the right to specify that decisions be made according to any tradition. In this way, we can consider an SDM’s decision to defer to Halachic Law as an appropriate application of a patient’s autonomous wish. In the Halachic tradition, decision-making may be classically autonomous where a Halachic law does not exist, but where a law applies, the patient is expected to follow it. The final decision for what following a specific law looks like is often determined by a leader in the community in consultation with a leader in Israel. This type of hierarchical decision-making is customary amongst the Hasidic Jewish community, and it is reasonable to believe that absent an alternative directive, this is how most members of the community would expect decisions to be made. Clinical cases are complicated by the fact that deference to Halachic Law can result in SDMs advocating for treatment the medical team does not feel is in the best interest of the patient. For example, intubation and mechanical ventilation are not considered “indicated” when a dying patient’s lungs are failing, but may be requested by an SDM applying Halachic law. As a result, invoking Halachic Law may create a context wherein the team comes to expect conflict. This can produce feelings of dread and a lack of agency on the side of the medical team and feelings of religious discrimination and abandonment on the part of the patient’s family. Unfortunately, if not resolved collaboratively, this can result in the community responding from a position of fear of undertreatment and encouraging the family to push for treatment beyond even what their religious law expects of them. Rather than improving patient experience, we see this approach lead not only to increased conflict around end-of-life decision making, but to the potential overtreatment of the patient, beyond what a nuanced application of their preferences requires. This presentation will use de-identified clinical ethics case review to consider the complex decision making context that may emerge at end-of-life with Hasidic Jewish patients. Recommendations to facilitate an ethical resolution will be provided based on experience working with the Hasidic community in Montreal, Quebec. Time will be given to a discussion of: 1) the different religious laws often evoked at end-of-life; 2) how a practicing healthcare ethicist may support the clinical team to approach each case where Halachic Law is invoked as unique and requiring of nuanced clinical judgment (to maintain physician integrity and meet ethical and legal obligations in their codes of ethics); and 3) how a practicing healthcare ethicist can foster respectful collaboration between the healthcare team, the patient’s family and SDM, and the Hasidic Community, to reduce conflict and improve trust for the good of the patient.
Not left to suffer: the moral experience of humanitarian healthcare providers and end of life care
Matthew Hunt, Elysee Nouvet, Kevin Bezanson, Carrie Bernard, Gautham Krishnaraj, Lisa Schwartz
With a growing number of populations facing humanitarian crises worldwide, aid organizations are deploying more healthcare workers than ever before. A primary focus of these activities is to save lives. However, inevitably, many patients cannot be saved. The experiences of providing end of life care in disaster affected settings have been systematically collected in this qualitative research study which seeks to understand the moral experiences of stakeholders in end of life care during humanitarian crises, including healthcare providers and members of affected populations. In this paper we share the results of interviews with 23 members of humanitarian aid organizations (12 humanitarian policy-makers of whom 11 also had experience as health professionals in a humanitarian crises; and 12 humanitarian healthcare professionals), deployed in a range of crisis settings including natural disaster, conflict and public health emergencies. The collected experiences of foreign national healthcare providers demonstrate their ideals and frustrations trying to mange end of life care in scarce resource settings with high competing needs. A thematic analysis of the interviews reveals tensions with the rescue imperative at the heart of humanitarian healthcare response, and a preoccupation with justice and compassion as central values in their lived experiences. This study is funded by Elrha’s Research for Health in Humanitarian Crises (R2HC) program.
Patients with Parkinson's disease, family caregivers', and health care providers’ perspectives of advance care planning for end-of-life care
Background: Advance care planning (ACP) has been shown to support patients in making future healthcare decisions and lower healthcare costs at end-of-life (EOL). Nonetheless, recent studies indicate that communication of ACP and implementation within the Canadian healthcare system remains inadequate. This presentation focuses on findings from a qualitative research project on the psychosocial and relational factors that impact patients’ with Parkinson's disease willingness to engage in advance care planning (ACP) for their end-of-life (EOL) care. It compares health care providers’ (HCPs), patients’ and family members’ views towards ACP barriers, as well as their recommendations to enhance supportive advance care decision-making practices. Methods: Semi-structured individual and joint interviews with 20 patients with Parkinson’s disease, their caregivers, and individual interviews with their health care providers (e.g. neurologist, general practitioner, nurse, and social workers) were conducted in a Western Canadian city. Interpretive description methodology informed an inductive thematic analysis of the findings and constant comparative techniques were employed to explore patterns of ACP experiences across and between datasets. Through triangulation of data sources, this presentation compares how patients and their caregivers, as well as patients who live alone or without care networks, engage in ACP regarding future EOL care. Results. The study explores barriers and facilitators to ACP pertaining to such issues as: placement planning, pain management, artificial nutrition and hydration, life prolonging treatment/ interventions, and medical assistance in dying, that participants have considered, or might consider, for their future end-of-life care. Two key themes were reported: relational factors (e.g. caregiving experience, support network, communication) and psychosocial factors (e.g. feeling burdensome, reluctance/avoidance) that may hinder or promote patients/caregivers' engagement in advance care planning for future end-of-life care decision-making. Conclusion: Findings from this study aim to generate person-centered practice recommendations on who, how and when to engage Parkinson’s disease patients and caregivers in advance care planning for end-of-life care.
4E: Genetics (4 x 30 mins.) Show Details
Genetics (4 x 30 mins.)
Lessons from Genetic Counselling and a Public Education Initiative on Cannabis Use, Genetics, and Mental Illness
Krahn, Timothy M; Austin, Jehannine; Uher, Rudolf
A June 2016 national poll showed that 7 in 10 Canadians are in favour of the legalization of cannabis for recreational purposes, and the federal government has promised to do so by July 2018. At the same time, the Task Force on Cannabis Legalization and Regulation has advised that to "mitigate harms between the ages of 18 and 25, a period of continued brain development, governments should do all that they can to discourage and delay cannabis use." As such, relevant public education is a public health priority requiring increased investments in awareness and prevention programmes, research, and healthcare supports and services across the population. Though cannabis use increases risk of psychiatric illness for all, the degree to which it influences vulnerability varies substantially according to one's genetic makeup: approximately one in three individuals in the general population (as carriers of a specific genotype) are seven times more susceptible to the pathological effects of cannabis. Cannabis use is responsible for 14-24% of schizophrenia cases. A replicated gene-environment interaction study model suggests that 77% of these preventable cases occur within the 33% of the population who carry the aforementioned genotype. If access to genetic information combined with expert counseling and supportive programming could help dissuade even 1 out of 10 of these people from using cannabis, 4000 cases of schizophrenia in Canada could have been prevented making this a very promising public health project for reducing risk and burden of psychiatric illness. Genetic counseling is an intervention designed to help people "understand and adapt to the medical, psychological, and familial implications of genetic contributions to disease." It is a client-centered, therapeutically oriented interaction involving bidirectional communication about aetiology of illness, and when requested, risk. Genetic counselling uses the shared understanding of aetiology of illness as a framework for helping clients to identify strategies that can be used to protect their mental health for the future. There is a strong emphasis on uncovering and addressing psychological issues that may be attached to pre-existing or new explanations for cause of illness (e.g. guilt, shame, stigma, fatalism), as these issues influence behavior (e.g. treatment adherence and help seeking). This presentation reports on a public education initiative to bring the lessons learned about mental illness from experts in genetic counselling and psychiatry to a wider public, including two presentations at local high schools and a Café Scientifique in Halifax Regional Municipality. The overall goal is to promote general community awareness and active citizen engagement, thereby building relevant health and ethics literacy. More specifically, the events will take as their primary focus discussions of if and how genetic test-based risk information might be ethically and effectively provided to youth and their families to lower risk, promote resilience, quell stigma, and promote public understanding. The presentation will also report on the ensuing dialogue regarding health concerns voiced by the public and responsive messaging from genetics experts on how to foster successful public health outcomes in the wake of legalization of cannabis for recreational purposes in Canada.
Avoiding non-liberal liberal eugenics
In the context of the ethics of human biogenetic enhancement, aside from issues associated with access and distribution, there are other social justice concerns that need to be addressed. One such concern arises from the predictable implications of the enhancement enterprise on the real choices of individual family builders. The concern emphasized here is grounded in consideration of those individuals (and the children of those individuals) that do not want to use biogenetic enhancements, despite their having unimpeded access to the technology. For such people, the ‘liberal’ eugenic enterprise is actually non-liberal, because it significantly impacts on the extent to which the option to not genetically enhance one’s children is an open one. The social pressure to enhance one’s children is likely to be powerful; it is plausible to speculate that family builders that are concerned with the flourishing of their children will feel pressure to genetically enhance their children, in order to give them the opportunity to compete for resources and opportunities within a society that has embarked on the enhancement enterprise. Yet, if family builders do not have the realistic option to not genetically enhance their offspring (without undermining the possibility for their children to flourish), then the liberal eugenics enterprise makes an uncomfortable slip towards non-liberal eugenics. Arguments for the view that there is a moral obligation to have the best child possible (e.g. Savulescu 2001) need to confront the idea that liberal ideology preserves the freedom of family builders to not genetically enhance their child, so long as the child would have a minimally decent life (Robertson 1997). This raises an important question: Should the children of family builders that do have access to enhancement but that choose not to use it be compensated in any way, to mitigate the extent to which they will not be able to fairly compete for resources and opportunities (with their genetically enhanced cohort)? The answer depends on whether there are any good reasons for family builders to not use biogenetic enhancements. Here is it suggested that there are at least some (cultural and faith-based) reasons that would qualify. Given this, it is argued that, in order to preserve liberalism in the context of a socially (and politically) condoned enhancement enterprise, family builders ought to be free to not genetically alter their offspring, and the state ought to compensate (non-enhanced) children if they are unable to compete for resources and opportunities. The main reason in support of this is that not doing so transforms the liberal eugenics project into one that is non-liberal; in order for a liberal society to remain neutral about whether family builders ought to genetically enhance their offspring, it should compensate those individuals that are not genetically enhanced. Not doing so sends a message that family builders do not have the (state-sanctioned and protected) liberty to decide whether or not to enhance their offspring. (I also consider, and reject, one possible alternative, namely forcing parents to genetically enhance their children after they have been born.)
How Privatized Eugenics Undermines Democratic Values
Karey Harwood, Ph.D.
In her recent book, The New Eugenics: Selective Breeding in an Era of Reproductive Technologies (2017), Judith Daar calls for the “democratization of ART” (205). It is through the democratic distribution of this life-giving technology, she argues, that the eugenic effect of providing privileges to the already privileged can be diluted. It is more rather than less ART that will rein in the new eugenics, because “the true eugenic effect of ART is not in its use but in its deprivation” (192). Her argument commendably rests, at least in part, on the principles of reproductive justice, including the right to have a child. But her argument also depends on accepting the core values of “privatized eugenics” – values that I will argue are inherently anti-democratic. To begin to make my case, I will examine the idea that “eugenics was inspired by the notion that not all people are created equal” (Buchanan et al. 2000, 57). Proponents of modern-day eugenics may be no less wedded to ideas of natural inequality, and no less averse to what has been called a “eugenic mentality” of quality control in the creation of offspring. Unfortunately, this eugenic mentality is fundamentally at odds with democratic values, the basis of which lies in the human construction and imposition of an ideal of equality over and above the vagaries of nature. Privatized eugenics, like other individual choices embedded in the market, perverts equality even while it celebrates individual freedom. Efforts to expand access to ART, though laudable, must still confront the need to constrain a eugenic mentality. Buchanan, Allen, Dan Brock, Norman Daniels, and Daniel Wikler. 2000. From Chance to Choice: Genetics and Justice. Cambridge: Cambridge University Press. Daar, Judith. 2017. The New Eugenics: Selective Breeding in an Era of Reproductive Technologies. New Haven: Yale University Press.
Epigenetic discrimination: Emerging applications of epigenetics calling for ethical scrutiny
Charles Dupras, Lingqiao Song, Katie M. Saulnier and Yann Joly
Over the past two decades, countries over the world have adopted different normative approaches to protect the public against ‘genetic discrimination’. In May 2017, Canada passed into law the Genetic Non-Discrimination Act, to prevent any person – except for physicians and researchers – from requiring someone to undergo a genetic test, or disclose the results of a genetic test, as a condition to enter into or continue a contract/agreement related to the provision of goods and services. In this presentation, I will show that these policies fail in addressing the emerging threat of ‘epigenetic discrimination’, that is the differential adverse treatment or abusive profiling of individuals or groups based on their epigenetic characteristics. Epigenetics is “the study of changes in gene function that are mitotically and/or meiotically heritable and that do not entail a change in DNA sequence”. Over the past decade, an increasing number of diseases have been associated to the disruption of epigenetic mechanisms in specific cell types. Distinct patterns of DNA methylation, for instance, have been associated to certain diseases such as cancers, cardiometabolic disorders and mental health problems. Thus, epigenetic tests may provide predictive information about an individual’s disease risk profile. They may also provide information about someone’s previous exposures to physico-chemical and psychosocial disruptors of epigenetic mechanisms. These scientific developments have generated increasing concerns about the level of protection of patients’ and research participants’ privacy and confidentiality. According to some authors, the degree to which epigenetic databases are secured should be carefully considered. Indeed, it is to some extent unclear how well existing regulatory mechanisms and encryption algorithms, developed for genetic information, are suited to epigenetic information. In this presentation, I will argue that important additional concerns relate to the non-medical use of epigenetic information for discriminatory purpose by third parties. So far, the literature on the matter has been scarce and mostly speculative. However, the rapidly developing interest of the insurance industry and forensic experts in accessing individual epigenetic information is calling for closer ethical scrutiny.
4F: Justice Issues / MAID (4 x 30 mins.) Show Details
Justice Issues / MAID (4 x 30 mins.)
Catholic Health Care & MAiD: Whose interests, needs & obligations?
Jenny M. Young, Ashley J. Payne, Christopher E. De Bono
Sue Rodriguez once said, “if I cannot give consent to my own death, whose body is this? Who owns my life?” With the legalization of medical assistance in dying (MAiD) in Canada, eligible Canadians now have the legal ability to exercise the autonomy to consent to their own death with medical assistance. As of June 30th, 2017 some 2,149 Canadians have completed MAiD. However, none of those MAiD completions took place in Canadian Catholic Health Care Organizations. Catholic health care will not participate in actions – even those consented to by the autonomous patient – that are intended to terminate or end the life of that patient. That’s because, in Catholic health care, life and natural death are approached as gifts from God, of which humans are active stewards or guardians. In this understanding a person has no obligation to prolong their life but does have the right as well as duty to reduce their suffering. What is key is intention: a person ought not to invoke an absolute power to intentionally hasten their death. For the health care system and faith-based providers, the question becomes how can a person’s legal rights related to MAiD be balanced with the core values of faith based organization? Can these fundamentally different approaches about one’s body and one’s life co-exist alongside one another? These questions confront us daily at Providence Health Care (PHC) in Vancouver, B.C., and we have created innovative solutions to address them. First, conversations about MAiD are encouraged, with factual information process and procedure provided to those making the request. Second, PHC policy allows in exceptional circumstances for MAiD assessments to occur onsite by external providers. Lastly, the role of a MAiD Response Lead was created to provide support, education, and guidance to staff to ensure a timely response when requests arise. Participants will learn (1) about the legal framework which permit faith based providers within BC to opt out of providing MAiD at their sites; (2) the way PHC accounts for the bio-psychosocial spiritual aspects of a person when responding to a request; (3) and our experience of parallel pathways, i.e that patients often remain engaged in our care while deliberating their MAiD options. Overall, participants will learn that the balance is messy, difficult, and imperfect. There are challenges, for example, acknowledging the reality that staff’s personal opinion can be at odds with the organization’s position. For this reason, PHC recognizes MAID, and the suffering behind it, to be a dynamic process. Our response has been iterative as we continue to learn from those we serve.
The Other Vulnerable
Ryan Tanner, PhD, JD
Concern for the decisionally vulnerable is a central theme in debates pertaining to assisted dying. Perceived risk to the vulnerable was a major source of opposition to the legalization of assisted dying in the first place, and continues to define objections to extending access to patients who are suffering greatly but whose deaths are not “reasonably foreseeable”, for example people with certain disabilities and people with mental illness as their sole underlying condition. Usually the issue is framed as pitting the autonomy interests of individuals who have a genuine wish to see their lives end against the life interest of people who may consent to a premature (assisted) death because of external social or familial pressure, or faulty decision making. The contentious point is how best to reconcile these interests, or indeed whether they can be satisfactorily reconciled at all. To the extent that these interests are irreconcilable, assisted dying opponents have a powerful argument for restricting it: allowing or expanding access to assisted dying, even in the context of great suffering, will result in some unacceptable number of premature deaths (say, a number beyond what we accept in the course of normal medical practice), and the moral imperative to prevent those deaths trumps the imperative to respect the autonomy of those with a genuine wish to die. I contend that the appeal to the possibility of premature deaths among the decisionally vulnerable is not nearly as decisive in these debates as it is normally taken to be. One reason for this is that I do not think that its implicit conception of the relevant conflicting interests at play fully captures everything that is at stake. The apparent strength of the argument from risk to the vulnerable derives from the perception that the vulnerable are in need of a particularly high degree of protection, as well as the perception that protecting lives is an obligation that overrides other considerations like autonomy and the relief of suffering. But those whose genuine interest lies with an assisted death are vulnerable in their own right, in ways that are not always apparent and are almost never articulated, and there is an obligation to protect them as well. More importantly, there is a strong argument that the obligation to preserve life is not overriding in the way necessary for the argument from risk to the vulnerable to succeed. What really matters is not life, but wellbeing (understood in a particular way), and restrictions on assisted dying for the sake of avoiding premature deaths will sometimes advance the wellbeing of some at the cost of the equally important wellbeing of others. The upshot is that even if it can be shown that allowing or expanding access to assisted dying does result in premature deaths, this fact is not decisive in respect of the policy that should be adopted.
Medical Assistance in Dying: Ethics, Hippocrates, St. Thomas and Pope Pius XII
The legalization of medical assistance in dying has presented some physicians—in particular those who feel bound by the Hippocratic Oath or who have a Catholic religious formation—with the problem of reconciling the law, medical ethics as outlined in the Hippocratic Oath and their religious beliefs. It has also led some religiously centred health care institutions—in particular, members of the Catholic Health Alliance of Canada (CHAC)—to state that physician-assisted death contradicts the basic tenets of Catholic health care. This paper examines the cogency of these physicians’ concerns and the validity of the CHAC's position in light of what the Hippocratic Oath actually says, the teachings of St. Thomas on human personhood, and the considerations raised by Pope Pius XII in his address on the prolongation of life to the International Congress of Anesthesiologists in 1957.
Revisiting a Quasi-Legal Approach to Intractable End of Life Conflict
Robert Sibbald, Catherine Gee
The intersection and overlap of Ethics and the Law is frequently described, but the practical implications are not always clear. Beyond mandatory reporting obligations, the questions of if, and when to engage formal legal mechanisms for difficult ethics cases lack clear guidance. Ontario offers a unique legal mechanism, the Consent and Capacity Board, which can be used to answer difficult questions about patients for whom conflict becomes intractable. Better understanding of this process, and the decisions it has rendered, may contribute to several positive outcomes including: lessened moral distress for staff (and family), and treatment plans that reflect the best understanding of a patient’s prior wishes or values. We have been tracking decisions made by the Consent and Capacity Board as they relate to end of life conflict for several years. We have previously reported on lessons to be drawn from decisions about the interpretation of ‘best interests’ and perceptions of physicians who make such applications. However, much has changed in the past few years including two landmark Supreme Court decisions, and a new College Policy that sets professional standards that rely heavily on legal interpretations. In light of this new environment, it is important to re-evaluate the Consent and Capacity Board as a procedural tool for managing one of the most prominent ethical dilemmas described in the literature – intractable end of life conflict. This presentation will raise, and offer experience/evidence informed answers to, questions such as: Are there common elements to cases that give rise to legal conflict at end of life? If CCB cases are predictable, what might be done differently to prevent conflict from escalating? Is the CCB a good tool in managing end of life conflict? If so, when should it be used? If not, what are the alternatives? Is the CCB a model other jurisdictions should now seriously consider?
4G: Research Ethics (4 x 30 mins.) Show Details
Research Ethics (4 x 30 mins.)
Justice and Attention to Detail: Avoiding Manipulation of Pregnant Women in Clinical Research
Justice in clinical research requires an examination of the presence of manipulation that is caused by power dynamics between clinician scientist and participant. Fair treatment of participants in clinical trials requires that clinician scientists obtain voluntary, informed consent from participants. One of the less-explored threats to proper consent is that of unethical manipulation, whereas manipulation is defined by the influence one has that bypasses another’s rational capacities so that the influenced makes a voluntary, but not autonomous decision. Power dynamics in relationships may cause the less powerful to be susceptible to manipulation in their decision-making process and it is the responsibility of the one in power to recognize this problem and mitigate its effects. In this case, it is the duty of the clinician scientist to recognize the cultural, social, and economic factors that shape the way participants view the power relationship with the clinician scientist. I will suggest that the recent push for the inclusion of pregnant women in medical research must come with a push for a new understanding of research ethics guidelines in order to respond to the unique vulnerabilities of pregnant women that may differ from the vulnerabilities of adult men, or the vulnerabilities of children. It is generally a concern that participants may be coerced into participating in research, or that participants will be exploited for their benefit to the global community. Rarely are bioethicists concerned about how power dynamics in social relationships manipulate participants into entering a trial, or continuing with a trial. My paper will analyse the importance of understanding motive manipulation for just clinical research practices. I contend that most populations are given proper attention to their vulnerabilities as participants in research, as there has been a long history of including them in research and understanding their needs, however, the marked exclusion of pregnant women brings with it a lack of understanding of the unique needs of pregnant women. In the first part of this paper I establish a common understanding of the term “manipulation” and what makes it unethical in terms of clinical research, as well as defend the need to focus on manipulation rather than similar concerns over coercion, force, or exploitation. Second, I will analyse a set of trials that took place in the 1990s that involved participants who were impoverished, pregnant women infected with HIV, and I will examine how all these elements contribute to manipulative circumstances. In the final part of this paper, I will establish general guidelines surrounding clinical research that suggest that clinician scientists have the responsibility to rectify concerns with manipulation in relation to their participants. My paper aims to show that current practices for clinical research do not offer a just approach when it comes to treatment of participants because they have not considered how one’s identity may shape power dynamics that may manipulate participants.
Do animals deserve moral considerations - answers from language evolution research
Philosophical disagreement persists regarding the moral status of animals. On the one hand, few philosophers will deny sentience or even consciousness to all animals. On the other hand, many philosophers insist that there is a fundamental divide between humans and all non-human animals. they argue that such a difference would justify attributing moral status only to humans. One argument in support of this position is the absence of language in all non-human animals. While many animals communicate, it is argued, that there is a fundamental difference between animal communication systems and human language. Based on the early work of Noam Chomsky it is often suggested that all animal communication is stimulus-response driven while only human language displays open-ended creativity. Looking at key components of language related cognition (ToM, and combinatorial semantics) I will argue that recent work from language evolution researchers on non-human primates suggests that at least for some non-human animals the difference to human language might be one in degree not in kind. It is often assumed that language is required for the cognitive ability to recognize other individuals’ mental states (attribute a ToM to them) and that only human language has combinatorial syntax. Recent research challenges both assumptions. Work on chimpanzees has shown that these nonhuman primates can read others’ intentions and understand that visual perception can lead to knowledge. In an experiment chimpanzees were more likely to emit alarm call in response to a snake in the presence of unaware group members than in the presence of aware group members, suggesting that they recognize knowledge and ignorance in others. Alarm calls were significantly more common if the caller was with group members who had either not seen the snake or had not been present when alarm calls were emitted. These results suggest that chimpanzees monitor the information available to other chimpanzees and control vocal production to selectively inform them. It has been known for a long time that some primates emit predator specific alarm calls. Recent research revealed that some species combine two different kinds of alarm calls (‘hacks’ and ‘pyows’) into different call series depending on external events. Individual calls refer to specific predators but sequences of the two call types (which can occur alone, or are inserted at or near the beginning of another call series) provide additional information to group members. In that case meaning is encoded by call sequences, not individual calls, suggesting a combinatorial semantics similar to that of human language. This work, which I will discuss in detail, suggests that any arguments that attribute a different moral status to animals because they have a communication system that differs in kind from human language need to be rethought.
Exploitation, Injustice, and What to do about it
Exploitation in the conduct of research is clearly wrong when it violates a person’s autonomy or when the exploitation produces harm. But what can be said about exploitation that is mutually beneficial and consensual? This type of exploitation is common in biomedical research but is less liable to generate the clear moral condemnation that a coercive or harmful study might. But exploitation is unjust. This is not simply an intuition: a growing number of philosophers and bioethicists are developing relational theories of exploitation to fully explicate how the concepts of degradation, oppression, and injustice define the wrongness of exploitation, a notoriously contentious concept. Relational accounts of exploitation, such as Ruth Sample’s or Hallie Liberto’s, locate the wrong of exploitation in the particular dynamics of an interaction. Citing degradation and oppression, respectively, particular relationships as well as institutional arrangements serve to define vulnerabilities to exploitation. Relational theories can clearly explain what is unjust about exploitation: it is a relationship that fails to recognize genuine moral value in another. I argue that consensual, mutually beneficial exploitation is unjust but that degradation and oppression themselves need not be present for exploitation to occur. Liberto’s account of vulnerability is too narrow and Sample’s view of exploitation is overly broad and would label any research that occurs under conditions of injustice as exploitative. My view is that corroding the ability to resist the causes of exploitation (oppression and degradation) is unjust, at least within the context of biomedical research, where power, knowledge, and authority imbalance is ingrained. Research that (a) exploits or (b) corrodes the ability of vulnerable groups to avoid exploitation are both sources of injustice, even if the relationship is mutually beneficial and consensual. Two applied questions that emerge from my relational theory of exploitation that I will also address are: (1) Given the frequent vulnerability of research subjects, when does consensual, mutually beneficial exploitation occur? And (2) Do current autonomy-centric institutional arrangements prevent exploitation in research? To answer the first question, there are a number of cases that flag potentially problematic interactions, namely misuse of trust and authority, the therapeutic misconception, and conflicts of interest. These cases often exhibit wide power and knowledge imbalances. When these imbalances are either used to extract benefits or have corrosive effects, wrongful exploitation is present. Finally, the second question allows me to suggest a way forward on one particular problem: the conflation of trust and trustworthiness that is common in autonomy-centric human subjects protections. Concerns about exploitation point to injustices that are more subtle and complex than violations of autonomy. In my view, a relational theory of exploitation provides the most promising approach to recognizing the importance of vulnerability as a serious source of injustice.
Advancing quality improvement through relational safety: An ethical analysis of patient and family experiences of QI interventions in an acute care hospital
Brenda Sawatzky-Girling (author); Patricia Rodney (co-author, Co-Supervisor); Michael McDonald (co-author, Committee Member); Sam Sheps (co-author, Co-Supervisor); Marja Karelia (Patient Partner); Sheila Pither (Patient Partner)
Improving the quality of care and lowering avoidable harm to patients and family are obligations on health professionals and health care institutions. Engaging patients in quality/safety initiatives is promoted as part of patient-centred care. New patient roles include taking more responsibility for the quality and safety of their own health care. Quality improvement (QI) is typically described in positive terms without considering how the context of its implementation may shape patients’ experiences. Ethical scrutiny of QI has centred on whether a project is research and therefore a matter of REB attention. If the project is deemed to be QI it is treated as ethically unproblematic. Doctoral research at UBC (in partnership with a tertiary care hospital) examined the assumption that QI involving patients is a beneficial extension of routine medical care. QI involving patients raises ethical questions about unexamined wider impacts on patients and/or health care providers. Concerns include how the burden that illness and treatment place on patients can shape their capacity to participate in QI interventions, and the complex power dynamics between patient/family-provider and patient-family. Furthermore, trade-offs in QI interventions (provider- vs. patient-centric, cost/quality vs. patient autonomy, pilots vs. continuing institutional support) can compromise the interests of current patients. To study agents in context, Doane and Varcoe’s relational inquiry (context, power) was layered on ecological systems theory (micro, meso, macro layers). Using Interpretive Description methodology, the researcher explored two QI hand hygiene interventions involving patients. She observed staff meetings and patient care in a hospital setting, interviewed patients/family/staff, and analyzed documents. Findings revealed patients wanted to be “good patients” and personal hygiene was an important aspect of a patient’s identity. The patient hand hygiene interventions studied were not necessarily implemented by staff nor experienced by patients as planned or reported. Patients and staff expressed a range of interpretations about the intent and value of these interventions, although they acknowledged the importance of hand hygiene in hospitals. Implications of the research centred on the value patients place on relational connections with their providers and health care settings. When people have a sense of relational safety (relationships perceived as safe, secure, straightforward, nonthreatening), they move towards connections with others, fostering trust. Relational safety was particularly important when care processes or providers are new or fluctuating, such as when QI is integrated at the point of care. This has implications related to ethics (e.g. patient values, sense of self, relational autonomy, social justice) and to the success of the QI. Emphasizing relational connections and shared meaning between a patient and provider interacting around a QI intervention is not typically part of the QI approach, or ethical analyses of health care delivery. My findings reveal that in addition to designing a specific new QI care process, organizations and providers ought to emphasize the relational interaction accompanying the process. Recommendations include introducing a focus on the contextual power dynamics of patient/provider interactions in quality/safety interventions in order to promote relational safety. Integrating this values-added approach may improve the ethics and efficacy of QI.
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Afternoon Refreshment Break
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Lightning 5 x 6 Rounds Show Details
Lightning 5 x 6 Rounds
Trackable Pills and a Biomedical "Big Brother"
As of mid-November 2017, the FDA has approved a digital pill that allows a patient to track their medication and share this data with their family and/or healthcare providers (HCPs). This could be a revolution in how we monitor illnesses, as it might help combat the perennial problem of patient nonadherence or noncompliance. Additionally, in utilising this trackable medication, patients with memory problems might also benefit because the sensors on the pill send data directly to an individual’s smartphone. But is this new technological breakthrough worth the potential costs? This presentation seeks to problematise this biomedical “Big Brother” approach to medication by highlighting the slippery slope this FDA ruling may have inadvertently created. To disseminate the data to HCPs, the smartphone application and the HCP must have the patient’s explicit consent. But how are we to draw the line with consent if this is meant as a technology to combat noncompliance? Additionally, this data is incredibly sensitive, so how might this affect patients in the case of a data-breach? The looming worry, however, is whether giving up autonomy over taking one’s medication is an appropriate request for a HCP to make of their patient.
Prioritzation of care in novice nurses
Justice is one of the four core principles of medical/nursing ethics. It is characterized by resource allocation of health care assets. Unfortunately, this aspect of nursing is rarely acknowledged, especially in clinical practice. Novice nurses often have the highest rates of burnout, stress and job strain. This phenomenon could be attributed to a wide variety of factors, and the inability to prioritize care is one of them. A prioritization issue is usually caused by spending a disproportionate amount of time with one patient or family. During the shift, this issue can lead to unsafe practices, feelings of incompetence and resentful comments from patients, families and staff. Over time, this discrepancy can lead to further attrition and job-dissatisfaction in one of the most vulnerable, yet promising groups in nursing. Furthermore, many new nurses become overwhelmed by their inability to address this stress, and addressing it from an ethical perspective is often the last thing on their mind. The first step is to acknowledge that there was an issue in prioritizing care. Potential solutions include the implementation of a mentorship program, continuing education in relevant topics, stress management sessions and open-ended meetings for novice nurses discussing issues that matter.
A VALUES-BASED ANALYSIS OF RECOVERY-ORIENTED PRACTICE AND MEDICAL ASSISTANCE IN DYING
Rosanna Macri, Melanie Stuckey, Frank Wagner
The Criminal Code of Canada has been amended to allow medical assistance in dying (MAiD) under prescribed criteria. Whether people with mental illness as the sole underlying medical condition should have the right to request MAiD is subject to considerable debate. It has been argued that access to MAiD is not compatible with recovery-oriented care, which has been mandated as the model of mental health care delivery in Canada. A comprehensive ethical analysis exploring the compatibility of the ethical principles guiding decision-making around MAiD and recovery oriented care was completed. The six overarching substantive and procedural ethics principles underlying MAiD identified by the Joint Centre for Bioethics are accountability, collaboration, dignity, equity, respect, and transparency. The four domains of recovery-oriented practice are promoting citizenship, organizational commitment, working relationship, personal recovery which is further broken down. Significant overlap of these principles was demonstrated, providing evidence that MAiD and recovery are not mutually exclusive and therefore, MAiD may be a legitimate option within recovery-oriented philosophy for mental health care. Denying access to the entire mental health population does not align with recovery principles and can lead to further discrimination of this population.
Gene drives for malaria elimination: novel technology, familiar ethical issues
Recently gene drive technologies have been proposed as promising solutions to myriad problems from bio-conservation to vector control for human disease. But are these novel technologies also attended by new ethical issues? Each time a new technology emerges on the scene there is a tendency to proclaim that we have ‘new’ ethical issues to contend with and that new frameworks must be developed to address them. The response to novel gene drive technologies, such as those proposed as tools to eliminate malaria, has been no different. But the reality is many, if not all, of the issues are familiar. Moreover, there already exists an abundance of guidance and numerous frameworks we can apply to address many of these issues. New technologies may require us to adapt our existing frameworks to their nuances and particularities, but by adapting and making use of the resources we already have on hand, we can move potentially life-saving innovative technologies along the development pathway to implementation faster so they can start saving lives sooner. I will discuss some places we might look for existing guidance in utilizing gene drives to control malaria vectors.
The Problem with "High Functioning"
Sometimes patients are told that they are “high-functioning” and thus can make due with less frequent appointments, or even without the same treatment options that some other patient might have received. This can include the denial of a prescription, because the healthcare professional (HCP) believes this “high functioning” patient can recover (or stabilise) without such medication. In this presentation, I challenge this practice. HCPs have very limited interactions with their patients, and these interactions are usually in clinical settings. Such interactions fail to capture daily struggles of these so-called “high functioning” individuals (e.g. an individual with an anxiety disorder that prevents them from replying to emails in a prompt manner, thus affecting their performance at work, is not in a setting where this might be displayed when they are interacting with their HCP). The purpose of this presentation is to problematise the label “high functioning” and to show medical experts, researchers, and practitioners that there is a relatively large sub-set of patients who are being unjustly denied the help they might need to truly recover from, or stabilise, their condition(s).
“If you were to mention shoulder dystocia…everyone would ask for a caesarian section…”: Nudging and ignorance in the Montgomery ruling
In 1999, Nadine Montgomery, a diabetic short-statured Scottish woman, was pregnant. While these characteristics make her at high risk for shoulder dystocia, her obstetrician Dr. McLellan did not raise this risk with Mrs. Montgomery, advocating for vaginal delivery. Dr. McLellan explained her decision to not raise these issues with her patient, saying, “if you were to mention shoulder dystocia to every [diabetic] patient, if you were to mention to any mother who faces labour that there is a very small risk of the baby dying in labour, then everyone would ask for a caesarean section, and it’s not in the maternal interests for women to have caesarean sections.”Mrs. Montgomery’s child suffered shoulder dystocia during vaginal birth, and as a result, her child suffers from cerebral palsy, a condition which could have been avoided through caesarian section. In 2013, the Supreme Court of the United Kingdom ruled that Dr. McLellan should have informed Mrs. Montgomery of these risks. In this paper, I argue that the Montgomery ruling has implications for the bioethical principle of nudging- that is, this ruling disallows a particular kind of nudging. First I discuss the facts of the case and the content of the ruling, as well as comparisons of this ruling with others including Bolam and Sidaway. I then provide an account of what I call, “nudging through ignorance,” which I claim is the kind of behavior which was condemned by the Montgomery ruling. Finally I attempt to show the difference between nudging via ignorance and straight paternalism, a distinction which needs to be made in order to show that the Montgomery ruling involves a new prohibition, rather than simply a reinforcement of previously discussed prohibitions. While it is focused on a ruling in British law, this work advances the field of practical and professional ethics by providing a case study which reveals more about the structure of nudging (an important bioethical concept globally), and the ethical and legal limits of nudging.