THE 28TH ANNUAL
CANADIAN BIOETHICS SOCIETY CONFERENCEMay 24th - 26th, 2017 | Hyatt Regency Montreal | Montreal, QC
Print Ready Agenda
The 28th Annual Canadian Bioethics Society Conference 2017 Agenda
Wednesday May 24th 2017
|7:30 am - 8:30 am|
Workshop Check-In and Breakfast Symphonie Foyer
Workshop Check-In and Breakfast
|8:30 am - 12:00 pm|
W1 : Vulnerabilities in Family-Centred Care: Are Children and/or Families Falling Through the Cracks? Show Details Symphonie 1
Vulnerabilities in Family-Centred Care: Are Children and/or Families Falling Through the Cracks?
In 2017 it is common for children to be described with terms that include our future, resilient and vulnerable. Their status in Canadian society has evolved from almost property to persons with rights debated in philosophical discourse, described through anthropological data, entrenched in local, national and international law, and recognized to varying degrees across contexts. At a time where most paediatric health care settings in North America advocate for Family-Centred Care, bioethicists are often engaged in clinical, organizational and research related consultations that shine a light on the enduring intersecting "vulnerabilities" of children and families. Differing norms related to decision making within families, culturally or religiously grounded health care requests, and the allocation of resources at the macro, meso and micro levels of health care are some of the contexts where children and/or families are at risk of “falling through the cracks”.
This will be the 5th annual interactive Paediatric Bioethics Preconference where children in health care are considered through the lens of the Canadian Bioethics Society’s annual conference theme. This theme offers an excellent opportunity to explore ethical issues associated with how children situated within families engage with health issues and their relationships with organizations that advocate for Family-Centred Care. This topic calls on participants to consider the range of cultural norms that define child within family relationships, issues associated with legal and ethical decision making and resource allocation frameworks for children, challenges that arise where the interests of a child patient are not consistent with those of other family members and other related issues.
Learning objectives for participants.
8:30-8:45am | Welcome and introducing the pre-conference – Randi Zlotnik Shaul
8:45-9:15am | The child within the family – an evolving and cross-cultural view from medical anthropology – Andrea Frolic
9:15-9:45am | Family-centred care: An evolving call of Canadian Paediatric health care – Randi Zlotnik Shaul
9:45-10:15am | Legally entrenched child rights and parental duties – where are the cracks and who might be falling through? What protections are owed to the more vulnerable members of society? Juliet Guichon
10:15-10:45am | The vulnerabilities and strengths of families in Family-Centred Care – Annie Janvier University of Montreal, Canada and Hôpital Sainte-Justine
10:45-11:15am | Recovering strength: Subverting the lens of vulnerability in Aboriginal child health – Michelle Mullen PhD - CHEO
11:15-11:45am | Facilitated brainstorming of opportunities for collaborative work – paper(s), survey (for publication) of views of Canadian Paediatric Bioethics community ethical issues in family-centred care – Christy Simpson PhD – IWK, Dalhousie University
11:45-12 | Wrap up and link to Paediatric Bioethics Network – Randi Zlotnik Shaul
Associate Professor and Bioethics Consultant,
University of Ottawa, Children's Hospital of Eastern Ontario
Neonatologist and Clinical Ethicist,
Univeristy of Montreal and Hopital Sainte-Justine
University of Calgary's Cumming School of Medicine
Director Office of Clinical and Organizational Ethics,
Hamilton Health Sciences
Randi Zlotnik Shaul
Director Bioethics Department,
The Hospital for Sick Children
W2 : Faire de la recherche AVEC (et non sur) le patient : fondements, pratique et enjeux éthiques Show Details Symphonie 3A
Faire de la recherche AVEC (et non sur) le patient : fondements, pratique et enjeux éthiques
Thème et objectifs généraux
La recherche axée sur le patient (« RAP ») est définie par les Instituts de recherche en santé du Canada (« IRSC ») comme un continuum scientifique qui mobilise les patients et les différents partenaires en se concentrant sur les priorités établies par les patients afin d’améliorer les résultats pour ces derniers. De par sa dimension inclusive et axée sur l’engagement significatif des patients, la RAP soulève un ensemble d’enjeux éthiques ayant trait tant à la recherche qu’à l’innovation dans la pratique clinique et la santé des populations. Les patients participent depuis longtemps à la recherche en santé.
Toutefois, nous observons depuis quelques années que les patients sont impliqués de multiples manières à la recherche, bien au-delà que comme simple « participant ». Par exemple, ils collaborent davantage dans le déroulement des projets de recherche, ils contribuent aux activités propres à la recherche incluant le recrutement, la cueillette de données, voire leur analyse, et la diffusion des résultats. Nous constatons même que certains patients prennent l’initiative et pilotent eux-mêmes des projets de recherche en santé qu’ils estiment prioritaires.
Ce déplacement entre une recherche SUR les patients vers une recherche AVEC les patients représente donc une avancée majeure en ce qui a trait à l'inclusion et à l’autonomisation (empowerment) des patients à prendre un rôle actif dans la conduite et la gouvernance de la recherche. La RAP est donc une approche inclusive visant à répondre à certaines iniquités et vulnérabilités en termes de santé, notamment en ce qui concerne les objets de recherche prioritaires, les meilleures pratiques en matière de prestation de soins ainsi qu’un souci constant de considérer la perspective et les besoins des populations négligées et sous-estimées.
De façon générale, cette nouvelle approche en recherche vise à procurer des avantages qui comptent pour le patient, notamment par:
En vue d’induire un changement au sein des pratiques de recherche en santé au Canada, les IRSC ont lancé, en 2011, une vaste initiative qui se veut être le pilier des soins de santé de la recherche axée sur le patient. Au Québec, c’est l’Unité de SOUTIEN SRAP-Québec (« l’Unité ») qui a pour mission de constituer une organisation structurée et permanente de soutien à la RAP. L’Unité se veut un moteur de développement des connaissances, d’innovation et de transformation des pratiques au sein du système de santé et de services sociaux du Québec, au bénéfice des patients et de la population. Ainsi, en accord avec sa mission, la priorité de l’Unité est d'améliorer la qualité, l'efficacité et la durabilité des soins de santé, afin de maximiser l’impact positif sur les patients.
En lien avec cette mission, l’Unité cherche également à mieux comprendre les dimensions éthiques propres à la RAP, ainsi qu’à prendre part à réflexion collective à leur égard. L’objectif étant donc de se doter de moyens permettant de sensibiliser et d’outiller la communauté par rapport aux enjeux éthiques en vue de répondre, par des actions concrètes, aux besoins des acteurs du réseau de la santé et des services sociaux et la communauté de bioéthique. Dans cette perspective, l’Unité souhaite présenter un atelier afin de réfléchir aux grandes orientations et aux principaux enjeux éthiques que pose la RAP, et d’impliquer la communauté bioéthique à prendre part active à cet effort réflexif et normatif. Compte tenu des développements et initiatives grandissantes des chercheurs en RAP, il devient pressant de réfléchir aux impacts de la RAP sur l’infrastructure actuelle en éthique tant en recherche qu’au sein du système de soins de santé.
Dans le cadre de cet atelier seront abordées les questions suivantes:
L’atelier sera l’occasion à la fois faire connaître la RAP à la communauté de bioéthique du Canada et amorcer une discussion avec elle face aux enjeux éthiques qu’elle soulève. À l’instar même de l’approche RAP, en collaboration de la direction scientifique de l'Unité, l’atelier a été mis sur pied en incluant et valorisant les perspectives et l’expertise d’une diversité d’acteurs (chercheurs séniors, éthicienne, doctorant et patients).
Proposition du déroulement L’atelier sera divisé en trois parties:
Objectifs d'apprentissage pour les participants :
Centre de pédagogie appliquée aux sciences de la santé (CPASS) Département de médecine de famille et médecine d’urgence Faculté de médecine Université de Montréal
Conseillère en éthique,
Unité de soutien à la recherche axée sur le patient (Unité SOUTIEN SRAP du Québec)
W3 : L'aide médicale à mourir: Une innovation sociale et un défi pour l'éthique clinique Show Details Symphonie 2
L'aide médicale à mourir: Une innovation sociale et un défi pour l'éthique clinique
La loi concernant les soins de fin de vie propose des soins palliatifs globaux et holistiques, en plus d’encadrer la sédation palliative continue, les directives médicales anticipées et l’aide médicale à mourir pour les Québécois qui répondent aux critères établis. Cette loi s’insère dans un contexte historique et légal. Les enjeux éthiques, légaux et organisationnels entourant l’aide médicale à mourir sont significatifs. Plus de 350 patients ont reçu l'aide médicale à mourir au Québec, ayant mené à de nombreuses consultations en éthique clinique ainsi qu'à des réflexion par le Collège de Médecins.
Les problématiques éthiques pour les médecins, les intervenants, les patients et leur famille seront abordés dans cet atelier :
Dans cet atelier interactif et interdisciplinaire, nous allons couvrir les éléments suivants :
Trois cas spécifiques seront discutés pendant cet atelier, couvrant des thèmes différents :
Au terme de cette activité, les participants seront en mesure de :
Juriste, Clinical ethicist, physician, professor,
Université de Montréal
Clinical ethicist, professor,
CSSS Laval, Université de Montréal
Clinical ethicist, physician, professor,
Université de Montréal
W4 : Parental consent to genetic testing in pediatrics: Clinical and ethical challenges Show Details Symphonie 3B
Parental consent to genetic testing in pediatrics: Clinical and ethical challenges
Genetic testing is frequently used in the investigation of children with conditions that may have a genetic basis, including developmental disorders, multiple malformations, and neurological conditions. Over the last few years, comparative genomic hybridization (CGH) became a first-line test in the investigation of children with multiple birth defects or dysmorphic features, developmental delay, intellectual disability, and autism spectrum disorder. CGH detects gains or losses of genetic material.
This test can yield different categories of results:
In children with developmental disorders such as development delay, genetic tests can detect causative abnormal results in 15-20% of children. CGH became a first-line test because it has been recommended as such in professional guidelines, based mostly on its diagnostic yield. There is little data on the actual clinical impact of a positive result for the patient and his/her family.
Furthermore, as a first-line test in the investigation of children with developmental delay and autism spectrum disorders, CGH is prescribed by physicians with no specific training in genetics. However, the results of our studies show that physicians and parents frequently have different perceptions regarding the relevance of CGH and its potential impacts for the child and the family. In addition, whereas our data show that most physicians believed that genetic testing has no or little negative impacts for the child and the family, many parents report psychological negative impacts such as anxiety, uncertainty, fear of discovering serious or fatal condition in their child and risk of stigmatisation. Finally, our results show that, even if parents signed a consent form, more than 75% of the parents did not remember that a CGH was performed as part of their child’s assessment and were unable to recall the information received regarding this test. In summary, these results highlight the importance of exploring clinical and psychological impacts associated with use of CGH in children.
Our results also underline ethical challenges about informed consent in this population. Improvements in communication and means to achieve informed consent are necessary, particularly with parents who face language barriers, cognitive limitations or low literacy. The current workshop will offer an opportunity to discuss ethical challenges related to the utilization of technological innovations, using CGH as an example to lead to a broader discussion about complex genetic tests in general. It will also offer an opportunity to discuss practical issues about how to obtain informed consent in parents or patients with intellectual disability or low literacy.
LEARNING OBJECTIVES: This workshop will address the following objectives:
DESCRIPTION OF THE AGENDA: This workshop will be divided in three parts.
First, we will present results of our studies on clinical and psychosocial impacts of CGH in children with developmental disorders. A special attention will be paid to ethical challenges associated with the use of these tests in children and to the practical challenges faced by clinicians and families.
Second, participants will be invited to discuss the challenges identified in the first part.
Finally, participants will engage in small-group exercises to improve their ability to develop or adapt consent forms for clinical testing in lay language to ensure they are simple and easy to understand and how to communicate the content of consent forms to patients and families, with special attention to patients and parents with low literacy, cognitive limitations, and/or language barriers.
Master student in genetic counselling,
University of Montreal
Geneticist and PhD in public health,
Psychologist and PhD candidate in biomedical sciences,
|12:00 pm - 1:00 pm|
Pre-Conference Workshop Lunch (for morning attendees and facilitators only) Grand Salon C
Pre-Conference Workshop Lunch (for morning attendees and facilitators only)
Student Mentorship Lunch Event Symphonie 4
Student Mentorship Lunch Event
|1:00 pm - 2:30 pm|
1A : Ethics and Law Show Details Symphonie 2
Ethics and Law
In this presentation, I focus ethical attention on environmental refugees. Since environmental refugees are not recognized under international law, I begin by clarifying the concept. I count as environmental refugees people who are forced to migrate because of natural disasters, environmental problems, and changing environments. I include people who have been forced to migrate across international borders as well as people who are displaced within their country. After I clarify the concept, I look at the current number of environmental refugees and several projections for the future. Climate change is already contributing to rising sea levels, the intensity of storms, regional floods, regional droughts, forest fires, freshwater shortages, and crop failures. In some projections, these environmental problems will create more refugees than war, oppression, and persecution do now. After considering the scope of the problem, I examine the ethical issues. To bring out these issues, I look at the role of human agency and social institutions in creating and responding to environmental refugees. Although we are all vulnerable to storms, floods, droughts, fires, and other environmental problems, we are not equally vulnerable. Vulnerability varies with country of residence, geographic location, social class, gender, race, and other factors. Issues of justice arise because of the differential risks of environmental problems, and because the people who face the highest risks often contribute relatively little to the problems. Furthermore, the burden of caring for refugees often falls most heavily on neighboring countries that have contributed relatively little to the causes. Issues of justice also arise because many of the people who are affected by environmental problems have not been allowed or empowered to participate meaningfully in the decisions that profoundly affect their lives. Since the distribution of the risks, the contributions to the problems, and the patterns of participation are often clearly unjust, I focus more of my attention on the issue of ethical responsibility. Here I use and extend Iris Marion Young’s ideas about how people should respond to structural injustice. I consider why people should take responsibility for environmental injustices. I argue that one ground of responsibility is the fact that most of us participate in structures that contribute to the environmental problems. I also consider how we should respond to the underlying injustice. I argue that the situation requires us to work politically to change the unjust structures. Thus, responsibility shades into responsiveness. And this is a creative task. The ethical task is to develop local and international communities that are more just and sustainable. To carry out this ethical task will take political engagement that turns immediate sympathetic responses to refugees into longer-lasting habits and structures.
In Defence of Dignity
Michael Da Silva
Dignity has a poor reputation in law and philosophy. While theorists are happy to appeal to autonomy, equality, and other concepts that admit of multiple interpretations, dignity is often criticized for being conceptually fuzzy. Michael Rosen (2012, 5-6) identifies three forms of dignity skepticism: (i) it is redundant, (ii) it is not a universal characteristic but something more modest, and (iii) it lacks “a coherent meaning of its own”. Variants appear in Canadian law. Trial judges famously suggested that if the test for violations of the equality right under section 15 of the Canadian Charter of Rights and Freedoms required them to discern whether the challenged governmental action infringed the claimants’ dignity, they would be unable to apply the test. The test for section 15 compliance in Law v. Canada was thus replaced by an alternative, beginning a cycle of test replacements that threw section 15 jurisprudence into some disarray. This much is clear: Claimants seeking to prove that a governmental allocation of health care resources violated section 15 thus no longer need to explicitly appeal to dignity. Dignity is not, however, a necessarily problematic concept. Like autonomy and equality, it admits of multiple interpretations but can be valuable concept if one does the work necessary to identify its best form. This piece defends the use of dignity as a distinct value, explains the role dignity should play in assessing health care allocation decisions, and makes the case that a dignity test could provide a helpful legal standard for assessing such decisions. First, I defend an account of dignity as objective value signifying the free and equal status of individuals. Drawing on the work of Rosen, Jeremy Waldron (2012), and others, I demonstrate that this approach accounts for the motivating force behind other historical and modern conceptions. I also explain how it is different from other values, but helps explain existing rights. Second, I explain that dignity already does and should continue to play a role in our assessment of health-care allocation decisions. Dignity is foundational in international human rights law (IHRL), which creates the international right to health. It explains why IHRL takes a rights-based approach to health-care allocation decisions and helps explain why IHRL law picks out certain goods as essential and prioritizes certain ‘vulnerable’ groups. This is valuable as it provides ways of measuring conformity with a rights-based approach to health-care justice. Yet this type of dignity differs from the type used to ground claims to assisted death, limiting its scope. Finally, I suggest that dignity can be used to create legally enforceable standards for assessing health care decision-making (though such a domestic right is unnecessary for health-care justice). I highlight the international experience of applying a standalone right to dignity (building on e.g., Aharon Barak (2015)) and draw on the work of Sophia Moreau (2004) to demonstrate that the objective sense of dignity helps explain the variety of pro tanto wrongs related to discrimination claim and could be used here again.
1B : Older Age and Vulnerability Show Details Symphonie 3B
Older Age and Vulnerability
Facilitated agency as antidote to high-risk vulnerability of older persons in health care
Canada's aging population has been described as a burden and threat to a health care system struggling with limited resources. Statistics, unfortunately, fail to discourage such complaints; currently more than 40% of resources are consumed by geriatric patients, and their needs are growing. The causes behind this resource usage, however, are complex, and fail to reflect the implied disaster of an inevitably frail, ill, and profoundly dependent population of aged persons. For instance, a large portion of these resources are consumed by so-called bed-blockers, who often remain in acute care facilities because there are no other care options open to them and their families. Second, in comparison with other practitioner to patient population ratios (e.g., in pediatrics), geriatrics remains a grossly underrepresented specialization. Finally, older individuals who wish to remain active in the community face a range of challenges beyond their individual impairments, particularly if they do not have the familial or monetary resources to help them realize these aims. Some of the key practical barriers, then, to efficient use of resources for care for the aged, have little to do with the geriatric population itself and are, in fact, simultaneously contributing to the increased medical needs of older persons. These barriers are significantly supported by deep-seated ageism and ableism; rejecting these ideological commitments and planning effective health care for aged persons requires, I argue, a close examination of the harms of compromised agency. Compromised agency creates high-risk vulnerability, and in turn, poorer health outcomes, greater resource demands, and reduced well-being. I suggest that aged persons are especially susceptible to high-risk vulnerability through agency reduction and inadequate provisions for restoring agency. By focusing on preserving and facilitating agency (rather than autonomy or traditional health measures), health care goals for older persons may become both less demanding, and more helpful to the individuals they are meant to serve. Facilitating agency does not merely (or always) involve ensuring, for instance, the ability to make decisions or ambulate independently; agency is involved in a vast range of simple activities that ground and express the self in action, e.g. hygiene rituals, cooking, caring for pets, learning, exploring outdoors, navigating social media, accessing entertainment, and expressing preferences for particular activities or company. These are all skills that support well-being and social participation with an active sense of self and engagement with one’s environment; facilitating patients’ exercise and cultivation of these skills thus blocks invidious forms of vulnerability. My suggestions herein align with the Canadian Medical Association’s policy recommendations for the geriatric population, which include effective care for aged persons through commendable avenues such as disease and injury prevention through better nutrition and exercise, and the creation of age-friendly environments. I intend for this work to help contribute what I take to be an important condition of realizing these recommendations: a preliminary account of how facilitating agency in geriatric patients can reduce or eliminate their high risk vulnerability as well as undercut the panic narrative of the ageing population’s health care demands.
La vulnérabilité des aînés vivant en résidence: le cas des caméras cachées
Sylvain Auclair, Emmanuelle Dorion, Marie-Claude Rhéaume
Notre communication abordera le thème de la vulnérabilité en référence aux aînés vivant en établissement. À partir d’un cas concret, nous discuterons des aspects sociaux, juridiques et éthiques de l’utilisation de caméras vidéo de surveillance dans le milieu de vie des aînés. Au terme de la réflexion, des pistes de solution seront proposées. Aspect clinique: Monsieur est âgé de 79 ans et réside depuis 6 mois dans une résidence privée. Dans les premiers temps, il s'y plait bien et est apprécié des autres résidents et des employés. Ce sont principalement ses troubles cognitifs qui l'ont amené à vivre en résidence. Il ne retrouve pas toujours sa chambre et perd parfois ses objets, mais garde un niveau de fonctionnement adéquat compte tenu du milieu où il vit. Monsieur est gourmand et adore les biscuits au chocolat. Ses enfants lui en apportent souvent, et cela lui fait grand plaisir. Quelques mois après son arrivée, Monsieur se plaint à ses enfants qu'on lui vole ses biscuits. Dans les premiers temps, les enfants le rassurent. Cependant, le discours de leur père persiste au fil des semaines, et il mentionne deux mois plus tard, qu'on lui a volé sa montre. Monsieur commence à manifester des signes d'anxiété et de repli sur soi, refusant désormais de participer aux activités du centre. Les enfants décident d'amener plusieurs boîtes de biscuit à leur père. Ils y retournent le lendemain pour constater qu'il n'en reste qu'une. Ils discutent de la situation avec les responsables de l'établissement, qui démontrent peu de considération vis-à-vis de leurs inquiétudes. Suspectant, en plus des vols, qu'un employé agit brutalement avec leur père, les enfants décident d'installer une caméra dans sa chambre. Constatant qu’il n’y aurait pas de suite, les enfants peuvent-ils placer une caméra de surveillance à l’insu du personnel et de la direction? Aspect social: L'entourage des personnes en perte d'autonomie joue un rôle crucial dans le maintien de leur qualité de vie. Nous explorerons les réalités auxquelles font face les familles dans un contexte de vieillissement d'un proche et le rôle de chaque acteur (gouvernement, établissements privés et publics, familles) dans la prévention de la maltraitance chez les aînés. Aspect juridique: La présence d'une caméra de surveillance dans une chambre de résidence pour personnes âgées est légale, dans la mesure où l'usager y consent. Notre réflexion apportera un éclairage sur les mécanismes juridiques pouvant être mis en place pour protéger davantage les droits des patients et des employés, tout en tenant compte des balises proposées dans le contexte du projet de loi 115. Aspect éthique: En complément du point de vue juridique, nous examinerons la situation à la lumière de l’éthique. En référence aux principes éthiques fondamentaux, nous discuterons de l’arbitrage possible entre les principales valeurs en opposition dans notre cas : la sécurité et le bien-être de la personne aînée et la liberté et le respect des autres aînés et du personnel. Une réflexion sur la dignité humaine sera proposée afin d’enrichir la discussion.
1C : Organizational Ethics Show Details Symphonie 1
Re-aligning a hospital quality, patient safety, professional practice and risk portfolio using an ethics framework
Julija Kelecevic, Sandra Kagoma, Sylvia Fung
Healthcare organizations are burdened with the ongoing task of balancing a multitude of competing factors: increasing needs of the patients, ensuring a healthy and safe workplace for their staff as well as the need to make ethically justifiable decisions for all stakeholders. Shrinking financial resources have put an additional strain on healthcare operations; employees are more vulnerable due to the necessity of doing “more with less” and they are faced with an increased uncertainty about job security. Here, we plan to present how the use of an organizational ethics framework, coupled with other decision-making tools, assisted in re-aligning quality, patient safety, professional practice and risk portfolio in a community hospital in Ontario. The process was initiated by the senior leadership team to address the financial deficit, as well as to examine the efficacy and quality of services in all hospital portfolios. The team for this project included the administrative lead for quality, patient safety, professional practice and risk, and the ethicist . The team collected a series of targeted data from all employees in the portfolio through a survey of three questions, as well as job descriptions and fact sheets of everyone within that portfolio from the human resources department. In two sessions, the team analyzed the available information by looking at the purpose of the portfolio, the ethics framework, as well as the organizational quality and risk framework. We will to describe the procedural steps in our presentation where we focused on the essential services to be delivered rather than the number of job positions. There was not an obvious single best option of how to structure the portfolio and re-align individual duties and responsibilities, while implementing cost-saving measures and ensure the quality of service. The team utilized an additional tool to assist in making value-laden decision; they employed Winkler’s and Gruen’s (2005) normative framework which outlines four substantive principles: provide care with compassion, treat employees with respect, act in a public spirit, and spend resources reasonably. Although the process was more labor intensive than conducting a cost-benefit analysis, it was important that the decisions were ethically justifiable and aligned with the hospital’s mission, vision and values. The outcome of the process inevitably affected all employees, so the team also put in place the evaluation strategy and support measurements , such as “National Standard of Canada for Psychological Health and Safety in the Workplace” and “4A’s to Rise Above Moral Distress” framework. All post-decision interventions are congruent with the organizational initiative to build a respectful and healthy work place. We also want to use this pilot project as an example to demonstrate how a healthcare organization can make difficult decisions, while ensuring transparency and accountability.
Experts under the influence? When Non-Disclosure of Conflicts of Interest Puts Public Confidence at Risk
Bryn Williams-Jones, Jean-Christophe Bélisle-Pipon, Louise Ringuette, Anne-Isabelle Cloutier, Victoria Doudenkova
The current erosion of public confidence in vaccination campaigns and associated public policy decisions may significantly decrease the effectiveness of these major public health interventions. Among the many reasons for public scepticism is the perception that some policy decisions are not being made in the public interest, but are instead biased towards commercial interests (i.e., those of industry). It is thus important to examine the practices of expert advisory committees (EAC) who guide policy making, to see how they manage real and apparent conflicts of interest (COI). In the production of expert advice, the members of immunization EAC can have a significant influence on public decision-making, particularly with regards to the selection of vaccines and determination of how vaccination campaigns will be deployed. Given this important influence, independence and transparency is rightly expected from such committees, which should be supported by robust COI management mechanisms. Imperfect disclosure and management of COI can negatively affect public confidence, as well as that of other health professionals and the broader scientific community, thereby undermining the efficacy of important public health interventions, i.e., vaccination campaigns. This study reviews the vaccine evaluation reports prepared by a Quebec EAC, available on the EAC official website on February 29 2016, for four types of vaccination-preventable diseases: invasive meningococcal and pneumococcal infections, whooping cough and human papillomavirus. The goal was to: 1) identify the COI disclosed by members of EAC in their reports compared to those reported in scientific publications; 2) analyze the nature of the COI (real, potential, apparent, personal, financial, institutional, etc.) and the potential impact (risk) on impartial decision-making and public trust; and 3) evaluate the COI management mechanisms in use by the EAC. The results of this study show that very few of the reports contained a section documenting the interests (and any COI) of EAC members, in comparison with the wide range of interests disclosed in scientific publications authored by members of the EAC. In addition, very often the COI disclosed in the reports did not correspond with those described in the scientific literature. Finally, the EAC had no publicly available COI policy or procedures. An Access to Information Request revealed that a policy and procedures did exist for the EAC (and for other advisory committees), although the details of the procedures were limited; it is curious to note that this information was not publicly available on an institutional website. Our study highlights the importance of implementing measures to increase the transparency on the part of immunization experts, to improve COI disclosure and management mechanisms, and to make all this information publicly accessible, in order to maintain and hopefully even improve public confidence in public health decision-makers. If good policies and procedures are in place to ensure impartial and evidence-based decision-making, then the public may reasonably accept that policy decisions are actually being made in the public interest, i.e., not influenced by commercial interests.
1D : Neurological Ethics Show Details Symphonie 3A
Ethical, Legal, and Social Challenges of Brain-Computer Interface: Comparing Expert and Public Perspectives
Matthew Sample, Stefanie Blain-Moraes, Sebastian Sattler, Eric Racine
In this talk, we will present the results of an ongoing multinational survey on public attitudes towards brain-computer interfaces (BCIs), a range of technologies made possible by recent advances in neuroscience, neurosurgery, engineering, and genetics. BCI devices establish an artificial connection between a brain region and its surroundings, including other parts of the brain, other parts of the body, or an external computer. Researchers are increasingly interested in applying these “neuroprosthetics” to address a range of neurological disorders, including locked-in syndrome, paraplegia, and depression (Krusienski & Wolpaw 2012). These applications depend not only on their technical efficacy but also on their acceptance by potential users and by society at large, of which neither has been adequately studied. Moreover, BCIs may eventually be used non-therapeutically, by the military or by healthy individuals for the purposes of enhancement or recreation. Scholars in neuroethics have speculated about the social, legal, and ethical challenges of these diverse applications (Klein et al 2015; Aas and Wasserman 2015), but the issues identified in that literature must also be validated with empirical investigation. Accordingly, we aim to reconnect expert ethical analysis with perspectives from members of the public, exhibiting their convergences and differences. To this end, we conducted a literature review of scholarly articles on the ethics of BCIs, identifying the dominant concerns asserted therein (i.e. personhood, stigma, empowerment, responsibility, informed consent, privacy, security, and justice). We then created a questionnaire presenting each of these issues in brief, asking respondents to evaluate them in terms of concern, in addition to providing basic demographic information. The survey instrument will be validated by scholars in neuroethics, translated into local languages, and study participants will be recruited from Canada and Europe (e.g. Spain and Germany). Once collected, the data will be analyzed to provide comparative insight into the way BCIs might be understood and taken up in differing national-cultural contexts. These preliminary results will guide future, more focused empirical investigation into the issues that are most concerning or salient to the public and to healthcare providers. Moreover, by demonstrating the degree of convergence between stakeholder and expert ethical analysis, we provide an early indication of whether scholarly work is sufficiently aligned with general social trends. Biomedical scientists, engineers, and healthcare providers can use these findings to improve design and application of BCIs through an improved understanding of socio-cultural context.
PARENTAL PROJECTION OF QUALITY OF LIFE DOES NOT REFLECT CLINICAL RISK OF NEURODEVELOPMENTAL SEQUELAE IN CHILDREN ADMITTED TO THE NEONATAL INTENSIVE CARE UNIT
Amaryllis Ferrand, Andreea Gorgos, Nabeel Ali, Antoine Payot
INTRODUCTION: Newborns born prematurely or with congenital malformations are at risk of neurologic sequelae. Critical decisions are frequently taken by the healthcare professionals with the family based on predictions of functional impairments and their impact on future quality of life (QOL). No known study has examined how parents predict this future QOL. OBJECTIVE: To delineate parental perspective of the future quality of life of infants hospitalized in the NICU, and having high risk of neurodevelopmental sequelae. METHODS: Prospective multicentre study conducted using a questionnaire validated from previously identified qualitative themes of parental projection of QOL. Perspectives from a cohort of parents of neonates at risk of severe neurodevelopmental outcome as defined by follow-up referral criteria (<29 weeks, Sarnat ≥2, IVH ≥3, PVL, severe neurological condition, severe genetic abnormality, exchange transfusion, ROP ≥3, diaphragmatic hernia or any condition having significant neurological impact) were compared with a control group including parents of all other neonates admitted to the NICU. Questions include likert scales (1 to 7) and yes/no answers. Variables were analyzed using Chi2 test and Pearson t-test. RESULTS: 107 questionnaires were returned (88%). 58 (54%) cohort group and 49 (45%) control. Both groups had similar income and level of education. Parents of cohort group projected more long term financial impact on the family (p=0.012). There were no statistical differences between the groups on projections of: physical and mental difficulties, pain and discomfort, longevity of life, having a chronic condition, feeling of difference and ability to cope, happiness and QOL, role in society, having friends and a family, ability to live alone and emotional impact on the family. Both group scored low on risk of long term physical and mental difficulties, pain or child feeling different (mean score 1.7-2 out of 7), and scored high on child’s happiness, QOL and ability to cope (mean score 6.4-6.6 out of 7). Cohort and control had moderate scores on emotional impact on the family (mean score 2.4-3.2 out of 7). 100% parents projected that their child would be self-sufficient for activities of daily living and able to find employment. CONCLUSION: Parental projection of future QOL of infants hospitalized in NICU is not associated with known risks of neurodevelopmental sequelae. Most parents predict overall a good future quality of life. Parental concerns focused more on the impact on the family. Other factors may influence if a parent projects a positive or negative future QOL.
1E : Mental Health Ethics Show Details Symphonie 4
Mental Health Ethics
Empathy, Asymmetrical Reciprocity, and the Ethics of Mental Health Care
In this paper I apply Iris Marion Young’s theory of “asymmetrical reciprocity” to an ethics of mental health care. I argue that because of its emphasis on engaging with others through respectful dialogue in an inclusive manner, asymmetrical reciprocity serves as an appropriate framework for guiding caregivers to interact with their patients and understand them in a morally responsible and appropriate manner. Drawing on empirical and theoretical research on empathy, I begin by defining empathy and explain its benefits in the context of mental health care. Among other goals, empathy should be used to initiate supportive, interpersonal communication with patients in order to understand their needs; empathy should help support patient empowerment; finally, empathy in therapeutic relationships should aim to reduce or resolve the patient’s problems. Despite the benefits of empathy in improving the quality of care that mental health patients receive, I discuss two problems surrounding empathy. The first is the difficulty of perspective-taking. Genuinely caring for others presumes efforts to empathize with them and to try and see the world from their perspective. But depending on the type of illness in question, and the severity of the symptoms a patient is experiencing, it may be very challenging for caregivers to actively try to empathetically engage with someone who is living with mental illness. Moreover, since empathy involves some degree of emotional identification with the experiences of others, the second issue is that if caregivers empathize too much with their patients they can potentially experience empathetic over-arousal and “compassion fatigue.” That said, I argue that these problems surrounding empathetic practices can be resolved if examined through the lens of the ethics of care. A key component of the ethics of care is its emphasis on the reciprocity involved in the development and sustainment of caring, trusting, and mutually supportive relationships between people. Given the importance of reciprocity in therapeutic relationships, I introduce two models of reciprocity that can be applied to a health care context: Seyla Benhabib’s symmetrical reciprocity and Young’s asymmetrical reciprocity. Symmetrical reciprocity is a view which claims that moral respect consists in a symmetrical relation of reversibility where we take the perspective of other people by imaginatively putting ourselves in their place. By contrast, asymmetrical reciprocity claims that we can take others’ views into account without imaginatively occupying their position or putting ourselves in their place. I argue that this approach of asymmetrical reciprocity is more appropriate for an ethics of mental health care—and can overcome the problems associated with empathy—because it does not require caregivers to identify with the experiences of their patients too closely, and it prevents the problem of empathetic over-arousal since it requires caregivers to maintain respectful distance from their patients and to not overstep interpersonal boundaries. I conclude by demonstrating how asymmetrical reciprocity can cultivate empathy more effectively in a psychiatric environment and show how asymmetrical reciprocity can ultimately improve therapeutic relationships between caregivers and patients living with mental health differences.
Why We Ought to Prescribe Mindfulness Meditation for Post-Traumatic Stress Disorder
Post-Traumatic Stress Disorder is a debilitating condition affecting a significant minority of individuals exposed to even a single traumatic experience. Symptoms can persist throughout life, even with treatment, thus permanently altering the established flow of an individual’s daily routine. This condition can manifest in several ways, and can appear as other conditions depending on the circumstances, making it difficult to initially diagnose. Additionally, treating PTSD as a purely medicalised condition can have a dehumanising affect on individuals because of the associated stigma; this is especially salient in cases which arise outside of combat as this condition is colloquially associated only with veterans. In this paper, I propose that mindfulness meditation ought to be implemented as preliminary and preventative treatment for two reasons: (1) it brings a humanising touch to the treatment of PTSD, and (2) through practicing mindfulness meditation, patients can begin to address their symptoms in a manner that primes them for further medical intervention. In the first section of the paper I address the neurobiological factors of note in patients with PTSD. Specifically, I outline the apparent decrease in white matter in patients with PTSD and the relation between mindfulness meditation and white matter integrity. I use two studies to demonstrate this initial reduction. First, when Villarreal et al. underwent their 2002 study their results showed was that there is a significant white matter reduction in PTSD patients which is not connected to hippocampal volume and is therefore an independent result of PTSD. Nearly ten years later, Fani et al. conducted a study to compare the effects of trauma on white matter in patients that developed PTSD against trauma that did not result in PTSD. They found that PTSD sufferers demonstrated significantly lower white matter integrity in the posterior regions of the cingulum bundle than non-PTSD patients. I then connect these to two additional studies which demonstrate that mindfulness meditation, even in relatively short periods of time, can increase white matter integrity. In the second section of this paper I address the more philosophical aspect of my argument: that the findings linking white matter integrity and mindfulness meditation in PTSD patients necessitates that we ought to implement meditation practices in preventative and preliminary mental health care and diagnosis. The moral aspect of this ‘ought’ comes from several lines of the Hippocratic oath, which still inspires medical oaths today. Here, I show how mindfulness meditation has been successfully used for other related mental health conditions, and urge that the virtuous doctor consider assigning meditation as a preliminary prescription while they continue to assess their patient. This prescription could prevent individuals from falling through the cracks, or being misdiagnosed, as the practice of meditation helps control some symptoms which in turn will give the doctor more time to properly address the condition.
|2:30 pm - 3:00 pm|
|3:00 pm - 4:30 pm|
2A : Humanitarian Ethics Show Details Symphonie 3A
Palliative care during humanitarian action - A global survey of humanitarian health workers and policy-makers
Matthew Hunt; Elysee Nouvet; in collaboration with the Humanitarian Health Ethics Research Group (HHERG)
TITLE: Palliative care during humanitarian action - A global survey of humanitarian health workers and policy-makers Presenters: Matthew Hunt (McGill University) & Elysée Nouvet (McMaster University) HHERG Humanitarian Healthcare Ethics Research Group Corresponding author: Matthew Hunt firstname.lastname@example.org Overview: This paper presents preliminary results from a survey on palliative care during humanitarian action. It is based on research funded through the Research for Health in Humanitarian Crises (R2HC) programme, and forms part of a mixed methods study aimed at informing realistic, context-sensitive guidance, education, and practice for the provision of palliative care during humanitarian emergencies. Background: In humanitarian crises such as disasters, epidemics, armed conflicts or extreme deprivation, triage approaches tend to direct limited resources to those most likely to improve and survive. While there is increasing global recognition for the importance of palliative care, it has largely been seen as outside the realm of possibility in humanitarian field projects. During crises, providing care at the end of life may be logistically, legally, and ethically challenging, especially where competition for resources is fierce. Despite these obstacles, interest is growing within the humanitarian sector to establish models and strategies to expand palliative care. Our study was developed in response to a lack of evidence-based guidance for palliative care in humanitarian crises, including knowledge around needs, opportunities and challenges – both ethical and practical - to providing palliative care in ways that are appropriate and feasible in the midst of emergencies. Method: In 2016 the Humanitarian Health Ethics Research Group developed the Palliative care during international humanitarian action survey in consultation with NGO-sector partners: the Palliative Care in Humanitarian Emergencies interest group (PALCHE), the SPHERE Project, and the International Children’s Palliative Care Network. The survey includes 17 items in addition to allowing space for free-form comments. It investigates palliative care in humanitarian action at three levels, asking respondents about: (1) personal and organizational preparedness to deliver palliative care in humanitarian emergencies; (2) existing resources currently available to support the delivery of palliative care in humanitarian contexts; and, (3) suggestions, ideas, and/or concerns related to the possible development of standards for the integration of palliative care into humanitarian healthcare. Survey respondents were recruited from over 50 organizations world-wide. Inclusion criteria specified respondents must, in the last two years, have either provided, participated in the management of, or been involved in the development of policy related to the delivery of healthcare in humanitarian contexts. Findings: Results from this survey provide a snapshot of current palliative care practices and needs in humanitarian contexts. We will present preliminary results including an overview of participant demographics and a summary of perceived needs, possibilities, and ethical facets of humanitarian organizations formally integrating palliative care into their response capabilities within and across categories of respondents. Conclusion: This survey presents the first comprehensive portrait of palliative care views and practices within the humanitarian field. It is thus an important step towards identifying opportunities to ensure that the alleviation of suffering is incorporated in humanitarian healthcare, alongside efforts to save lives.
Lived experiences of ethics and politics of palliative care in humanitarian contexts
Schwartz, Lisa in collaboration with the Humanitarian Health Ethics Research Group
Overview: This paper uses as its point of departure interviews (N=12) conducted with individuals with first-hand experience, as policy-makers, practitioners, and/or operations managers, with humanitarian healthcare. The aim of these interviews is to investigate the perceived need for and/or ethical challenges and possibilities of palliative care being (more) integrated into healthcare delivery in humanitarian emergencies. Conducted within the framework of the Research for Health in Humanitarian Crises (R2HC) programme, these interviews form one of 3 data sources in a mixed methods study aimed at informing realistic, context-sensitive guidance, education, and practice for the provision of palliative care during humanitarian emergencies. Background: Humanitarian healthcare response often occurs in high mortality contexts. In all humanitarian settings, a proportion of those presenting for care in humanitarian emergencies will be beyond cure. In a landscape of humanitarian action where the dominant discourse is one of rescue and response capacities are stretched, the needs of these patients’ (e.g. patients with acute trauma, patients with multiple complex illnesses or late stage cancer) risk “falling through the cracks” of humanitarian care. Our study was developed in response to a lack of evidence-based guidance on the unmet needs for, possibilities, and ethical as well as practical challenges of providing palliative care in a way that is appropriate and feasible in the midst of emergencies. Method: In 2016 the Humanitarian Health Ethics Research Group developed semi-structured interview guides for administration to individuals with first-hand experience in the last 24 months of delivering, overseeing, or working on policy related to the provision of care in humanitarian contexts. Interviews investigated palliative care in humanitarian action at three levels, asking respondents about: (1) lived examples with palliative care being done well/unwell within a humanitarian context; (2) their perceptions of whether or not and on what bases palliative care during humanitarian emergencies ought to be considered an ethical obligation for all humanitarian organizations; (3) their perceptions of key challenges and possibilities for integrating palliative care more fully into humanitarian healthcare. Findings: Results from these in-depth interviews with a range of actors provide a snapshot of current palliative care practice and need in humanitarian contexts, as seen from those on the front-lines of healthcare delivery in those contexts. Conclusion: The need for, ethical value and limitations of providing palliative care in diverse humanitarian emergencies is under-explored at this junction. In humanitarian settings as elsewhere, ethical parameters and guidelines for healthcare delivery that are developed without input from those on the front lines of this delivery may lead to frustration, failure, or less than optimal adaptations. This interview set provides important insight into the ethical and practical considerations that inform action and experiences of palliative patients in diverse humanitarian settings, from the perspective of front-line providers and policy makers.
Ethical challenges at the intersection of policy and practice in humanitarian contexts
Leigh-Anne Gillespie; Lisa Schwartz; Julia Abelson; Lydia Kapiriri; Matthew Hunt
Study/Objective The aim of this interpretive description study is to explore how policies and ethics inform each other, in order to better understand where problems arise and how policy in humanitarian healthcare organizations can be improved in this regard. Background Healthcare professionals working in humanitarian contexts are at the forefront of some of the worst scenes imaginable, and can feel unprepared to respond effectively. Researchers have just begun to understand the range of ways in which humanitarian healthcare organizations’ policies can shape ethical dilemmas in the field. This study lays out some of the ethical tensions that affect the profession by identifying ethical challenges that arise from aid agency policies and practices, or that trigger the need for improved policy development. Methods We interviewed 14 organizational members (OMs) from Canadian and international offices of humanitarian healthcare organizations to explore the questions and objectives guiding our study. In order to understand how problems and ethical issues are identified in humanitarian aid organizations, and their relationship to policies and practices in this regard, we used interpretive description (ID) methodology. We prioritized understanding to go beyond description and more deeply into the interpretive aspect of ID in order to unpack problems and ethical issues in humanitarian aid. A thematic analytic approach informed by ID was used to explore understandings of ethical dilemmas revealed in interviews. Results We identified three main thematic priorities, which can best be framed as tensions: 1) Unaware of its past (tension within humanitarian healthcare organizations to be nimble, responsive, and sufficiently structured while at the same time not feeling bogged down with the past); 2) Push-pull (tension between operational choices versus on-the-ground realities); and, 3) Social norms and expectations (tension between organizational vision and community vision, for example perceptions of vulnerability). Conclusion It is important for humanitarians to identify and discuss ethical challenges and problems, to ensure responses to emergencies are not disconnected or lead to negative impacts. While this paper cannot show saturation of the types of ethical challenges facing humanitarian healthcare organizations, it is a move to bring stories forward and formalize and capture histories so we can learn from them.
2B : Vulnerability in Research Show Details Symphonie 4
Vulnerability in Research
Recognizing Risk and Vulnerability in Research Ethics: Imagining the "What ifs?”
Elizabeth Peter, Associate Professor Lawrence S. Bloomberg Faculty of Nursing & Chair, Health Sciences Research Ethics Board, Judith Friedland, Professor Emerita, Department of Occupational Science and Occupational Therapy, University of Toronto & Chair, Ethics Review Board of Public Health Ontario.
Background & Purpose
Research ethics committees (RECs) are expected to be particularly diligent in protecting participants who are vulnerable and at increased risk by virtue of belonging to a particular group. At the heart of any discussion regarding a person’s vulnerability is the idea of being “substantially incapable of protecting one’s own interests” (CIOMS, 2002), but how do we determine when people cannot protect their own interests? While there have been many attempts to disentangle the issues encompassed by the concept of vulnerability, the process of ethics review remains flawed. RECs may misunderstand the vulnerability of participants and underestimate or overestimate their risks, particularly given their distance from the field. Understanding how vulnerability is addressed in the current review process is a first step in protecting participants and promoting inclusion.
The research questions were:
1) What do RECs identify as the vulnerabilities that were not recognized, were underestimated, or not adequately described to participants?
2) How do RECs help protect the perceived vulnerability of research participants and mitigate risks?
A feminist ethic of care, which provides insights into how ethical responsibilities can arise from vulnerability, provided a theoretical basis for this study. It also describes how the moral world can be looked at from two perspectives—one that emphasizes our ethical responsibilities in relationships with particular others, “ethics up-close”, and those regarding strangers and distant others, “ethics at a distance.” The letters (n=343) sent to researchers as a result of full board meetings at the University of Toronto held between 2010 and 2012 were collected and de-identified. Categories were first identified and then a ‘retroductive’ process was used to move between the categories and concepts integral to an ethic of care which allowed a deeper theorization of the data.
One over-arching theme, recognising and responding to cascading vulnerabilities, was identified which refers to the concerns that unfold as REC members reviewed studies that included participants who were considered vulnerable a priori because of their group membership and/or were considered to become more vulnerable by the research being conducted. Four subthemes were also identified: identifying vulnerable groups, recognising potentially risky research, imagining the “what ifs”, and mitigating perceived risks.
Our analysis showed that RECs attempt to protect the perceived vulnerability of participants and mitigate their risks by taking a distant and mediated view. RECs have little or no opportunity to know and understand the issues at play first hand. As a result, they generate an excess of possibilities regarding risk. Because vulnerability is the result of many intersecting physical, psychological, social and political factors, only an up-close knowledge of specific individuals would allow for vulnerability to be accurately determined. Indeed, it is possible that under the current paradigm for review RECs may unwittingly encourage stereotyping of groups, increase stigma, and undermine agency. Participant protection may be better served with greater attention paid to the skills of researches and increased involvement of vulnerable participants in research processes.
A Case For Treating Clinical Trial Participation As Labour
Andrew D.F. Ross, PhD
Much of the discussion around avoiding exploitation of participants in clinical trials concerns limiting the burden of trial participation on over-researched groups, or the relevant standard of care for trials conducted in Low and Middle Income Countries (LMICs), or participants’ post-trial access to tested interventions. The fair distribution of the benefits from successful clinical trials is often emphasized, though there are predictable disagreements about what is a fair distribution and what are the relevant benefits. However, there has been relatively little serious discussion of one readily available model for distribution of transactional benefits, namely the labour model. Presumably this is due at least in part to the culturally predominant view in this field that offering payment to research participants can somehow be coercive. In this paper, I will argue that clinical trial participation (whether by healthy volunteers or patients) is properly thought of as a form of labour. Secondly, I will argue that compensation, in the form of monetary payments to participants, is generally appropriate to commercial exchanges of labour, and that compensation can help avoid or minimize exploitation. Thirdly, I will review several competing concerns, which could be argued to support the limiting of compensation offers. Finally, I will outline a compensation model for participants in commercial clinical trials, which I will argue provides better protection of participants against exploitation than the status quo, while remaining feasible and not worsening the situation of the badly-off.
2C : Decision-making Models Show Details Symphonie 1
Sowing the ‘SEED’ for a Supportive Decision Making Model
Daniel Buchman, Soodabeh Joolaee, Anita Ho
Background: Despite the centrality of individual autonomy in western bioethics, many clinical ethics dilemmas involving patients of diverse backgrounds highlight the need for attending to relational factors in considering treatment decisions. However, few relational tools exist to help health care providers (HCPs) support patients and families though complex decisions in ways that truly respect people’s agency. Methods: This presentation focuses on findings from a multi-phased Canadian qualitative study examining intersecting factors affecting patients’ and families’ ability to make complex healthcare decisions between 2012-2016. Based on interviews with 41 HCPs, 86 patients, and 41 family supportive decision makers (SDMs) of diverse backgrounds in Vancouver, we developed a relational supportive decision-making model. Using treatment decision case examples, we then conducted three focus groups with 18 non-physician HCPs and an additional 8 physician-interviews in Vancouver and Toronto. Results: Based on HCPs’ feedback, we refined a 4-step iterative ‘SEED’ model of relational decision making: 1) Seek collateral information, 2) Engage in conversation, 3) Explore options and preferences, and 4) Decide with patient/SDMs, document, and debrief. The model provides HCPs practical strategies, trigger questions, communication recommendations, and available resources for each step to engage patients and families. It embeds supportive and collaborative approaches at the interpersonal and system levels. By helping HCPs gather relational and contextual information regarding the patient, the SEED model is designed to help anticipate the needs and resources that are necessary to support healthcare decisions that are made in relational and social contexts. Conclusion: An iterative relational model may facilitate collaborative decision-making that can empower patients and families in therapeutic encounters. Prospective collaborative studies including medical teams, patients/SDMs, and clinical ethics committees/consultants may also help to explore the long-term effectiveness of preventing decisional dilemmas at the bedside.
What values are behind a good decision? Five years of system-level ethics decision-making as values guiding tool
Susan Rink, Raiya Suleman, Duncan Steele, Bashir Jiwani
Fraser Health Ethics Services (FHES) has been providing our process-driven system-level ethics service in its current form since 2010. This process involves a small team of people with diverse backgrounds and expertise undertaking a systematic analysis of facts and values to determine preliminary solutions to identified problems. This is followed by iterative deliberative consultation with key stakeholders to arrive at solutions that live up to shared values. In 2015, FHES began a compilation of the values used in our system-level ethics consultations over the past five years. We undertook this work to gain an understanding of the major value themes that have guided decisions for our partners over the past 5 years. Thirty-nine consults were included in the analysis which included over 1,000 value statements that had been used to guide a wide range of system-level decisions. The document details the 6 major categories of value themes: Integrity, Trust, Respect, Professional Practice, Advancing Patient and Family Wellbeing, and Stewardship. Integrity, Trust, and Respect are considered “core themes” as they are essential components of all Fraser Health decisions. The result is a summary document that has value in two manners. It enables observation of what is being seen as important by decision-makers. It is also used by our team to guide current decision-making within our system-level ethics service and hopefully improve the quality of decisions and ensure they are being guided by a fulsome perspective of what is important within a given context.
Une démarche éthique interdisciplinaire en six champs d’action
Paule Savignac & Jasmine Foulem
Les demandes de consultation en éthique clinique sont motivées par des situations cliniques et psychosociales complexes où des intervenants de toutes disciplines confondues vivent un sentiment d’impuissance dans une contrainte à la liberté d’action. Dans l’appel à la consultation, les intervenants demandent à être aidés pour comprendre ce qui « est » et pour résoudre l’incapacité d’agir dans laquelle ils se retrouvent. Lors de la consultation, le soutien par l’écoute et la sollicitude permet de diminuer l’inconfort des intervenants. Plus encore, la démarche d’analyse éthique permet l’exercice de la raison pratique et, ensemble, de clarifier les enjeux et d’évoluer vers le discernement des responsabilités sollicitées et des possibilités d’agir. Dans le but de promouvoir une intégration explicite de la dimension éthique au jugement clinique, en 2014-2015, nous avons mené une recherche-action en éthique clinique portant sur l’efficacité d’une approche pédagogique en quatre temps visant le développement de capacités éthiques. L’approche pédagogique a été développée à partir de la proposition néo-pragmatique selon laquelle l’intervention en elle-même devient éducative et que le collectif apprenant peut, à travers l’expérience, adapter et utiliser les mécanismes proposés en réponse à ses besoins. Cette recherche ancrée dans la théorie du care, la narrativité et l’éthique de la discussion a, d’une part, permis d’évoluer vers une conception d’une approche pédagogique intégrée et brève. D’autre part, elle fait place à la création d’une fiche synthèse d’une démarche éthique interdisciplinaire en six champs d’action. Ce dernier outil, actuellement utilisé dans deux établissements de santé et de services sociaux s’avère être un repère utile à l’épanouissement de la compétence éthique des intervenants. En présentant la démarche éthique interdisciplinaire en six champs d’action, nous exposerons les capacités éthiques appelées à s’épanouir personnellement et collectivement dans un processus intégrant le raisonnement éthique au raisonnement clinique.
2D : Policy and Justice Show Details Symphonie 2
Policy and Justice
Ontario Drug Benefits Removing Coverage for High-Potency Opioid Medications: An Issue of Justice
As of January 2017, the Ontario Drug Benefits (ODB) formulary will no longer include coverage of high potency opioids. Palliative patients over the age of 65 and those who rely on subsidized drug coverage through Ontario Works will not have access to medications they need for treatment of pain. This will significantly impact quality of life for a group of patients who have a prognosis of less than six months. Palliative care physicians have ethical concerns regarding this substantial change to the care of vulnerable patients. This change has been implemented due to concerns of opioid abuse, addiction, and diversion throughout the province. The rationale behind removing these higher potency opioids from the formulary is that having a limitation on opioids available for coverage will minimize inappropriate prescribing and encourage physicians to taper opioid doses to improve patient outcomes. Beneficence is a major value underscoring this plan. These changes are based on evidence from the well-respected Canadian Guidelines for Safe and Effective Use of Opioids for Chronic Non-Cancer Pain. Unfortunately, this delisting has been applied to all patients in the Ontario Drug Benefit program, regardless of their diagnosis. Patients with terminal cancer and cancer-related pain will not be privy to any exceptional or compassionate access. The Canadian Society of Palliative Care Physicians has released a statement expressing concern regarding appropriate access to opioid medications for cancer patients. The main concern is that the principle of justice is being violated. Patients with private insurance will still be able to access these high potency opioids while those who are reliant on ODB will be at a significant disadvantage. These palliative patients affected are vulnerable members of society, as they are mainly seniors and individuals with low-income or disabilities. A particularly vulnerable group of patients that are affected by this change are patients on ODB with a history of drug addiction who have been diagnosed with a terminal cancer. There is a body of literature that describes physician discomfort with opioid prescribing in palliative patients with a history of addiction. This group of patients is already at a disadvantage to receiving quality pain management. This presentation will review the changes being made to the ODB formulary and how they affect a group of socially vulnerable palliative patients. It will explore this issue from a social justice perspective and will also describe a particularly vulnerable subgroup of palliative patients, those with a history of drug addiction.
Justice and national policy orientations: The case of neurodevelopmental disabilities and related policies
Roxanne Caron, Michèle Stanton-Jean, Éric Racine
Neurodevelopmental disabilities such as cerebral palsy and autism affect a population which has been described as “doubly vulnerable”. Young people with neurodevelopmental disabilities have conditions that can impair their cognition, communication, mobility, and/or social interactions. Young persons with neurodevelopmental disabilities often have to rely on others to make decisions on their behalf because their age does not qualify them to participate in decision-making, or because they struggle to reach the capacities needed as competent and autonomous decision makers. Therefore, these individuals are prone to suffer because of systemic conditions that could prevent them from accessing quality healthcare, social services, and educational or economic opportunities. The presentation aims to reflect on possible connections between broader moral-political philosophies and their perceived implications for individuals with neurodevelopmental disabilities. To do so, we examine how the principle of justice, as operationalized in biomedical ethics, can take on different meanings depending on the political philosophical orientation of different countries. In a first account, where justice as equality is privileged, individuals’ needs are prioritized, often to the detriment of a deeper inclusion of said individuals in society. In contrast, when states choose an approach of justice as fairness, the community becomes more important, and with it the inclusion of individuals into its activities. A state’s general approach to justice has implications for the implementation of evidence-informed healthcare practices and social services. In the second part of this presentation, we examine three countries, Sweden, the United States of America, and the United Kingdom, which all have comparable economic resources but entertain different views about public policy and justice. Using national legislation to guide our assessment of policy orientations regarding neurodevelopmental disability, we show how these different approaches to justice result in different outcomes for persons with neurodevelopmental disabilities (e.g., healthcare services offered, school integration, employability, social inclusion). We focus in particular on indicators related to the transition from pediatric to adult healthcare services, a period for which several issues have already been identified in the literature. This transitional period is also of the utmost importance for the integration of young adults in both educational and work settings, both important factors when we consider disability policies more broadly. With this research, we posit that national policies for neurodevelopmental disability might be indicative of governmental orientations towards healthcare and justice more generally. While there is great need to compare different policy approaches to neurodevelopmental disability and their real-world implications on the life of individuals and their families, this exercise is challenging because of the lack of concrete data regarding the effectiveness of different measures. We thus close this presentation with a call for greater synergy between moral-political analysis, evidence-based policy development, and measures of policy outcomes.
2E : Issues of Equity and Access Show Details Symphonie 3B
Issues of Equity and Access
Out of Sight, Out of Mind: How Rare Disease Patients Have Been Forgotten.
People with rare diseases often have no choice but to drain our health care system as they embark on a seemingly never-ending search for a diagnosis. It is estimated that 1 in 12 Canadians are living with a rare disease (defined as a condition that affects fewer than 1 in 2000 people) and that only 5% of those diseases have effective therapeutic interventions available. With no effective treatments, many patients spend a disproportionate amount of time in our health care system searching for ways to manage their condition(s). These diseases can also be hard to diagnose because many of them mimic the symptoms of more common diseases. The similarity in symptomology poses a challenge for patients and physicians who often find themselves looking in the entirely wrong direction in their search for answers.
This search for a diagnosis has been shown to be all consuming for many people and often has a hugely negative impact on their quality of life and ability to fully contribute to society. When some of those patients with rare diseases do eventually get lucky enough to obtain a diagnosis, many of them continue to struggle to access medication, community supports, disease-specific supports and knowledgeable physicians.
My presentation argues that people with rare diseases, who represent a significant percentage of our population, are falling through the cracks and we have an ethical duty to act now to help them.
Canada can begin to address this problem by simply following through on what it already started when the federal government agreed to adopt (but did not) a framework in 2012 for addressing the burden of rare disease. This framework has yet to be implemented, but has been supported by the community of rare disease advocacy groups because it directly addresses important priorities within our health care system. Implementing this framework, or something similar that is motivated by the same concerns, has the potential to bring about many benefits to Canada's health care system, including:
Furthermore, implementing this framework would acknowledge that there is a vulnerable segment of Canada's population that is in need of, and is in fact owed, better care than it is currently receiving.
Equity in the provision of physiotherapy care for injured workers in Canada: views of physiotherapy professionals
Anne Hudon, Debbie Feldman, Matthew Hunt
Work-related musculoskeletal injuries impact the physical, mental, financial and social health of individuals, and can lead to prolonged disability and absence from work. In Canada, a large proportion of workers suffering from musculoskeletal disorders are referred to physiotherapy. Although healthcare support offered through workers’ compensation systems aims to facilitate workers’ recovery, research has shown that barriers exist to the provision of high quality care. Indeed, several studies in the work disability field suggest that numerous ethical tensions arise in the daily work of healthcare professionals involved in the treatments of injured workers, including physiotherapists. The main objective of this study was thus to elicit the perceptions of Canadian physiotherapy clinicians regarding ethical tensions arising in the care of patients with musculoskeletal injuries supported by a workers’ compensation board. To do so, we used the qualitative methodology Interpretive Description. Purposive and snowball sampling were used to recruit 30 physiotherapy clinicians from British Columbia, Ontario and Quebec. We used a recursive approach to data collection and analysis, and constant comparative techniques to elicit patterns across the whole set of data. In this presentation we discuss our findings related to issues of equity in the provision of physiotherapy services to injured workers. Participants faced a range of challenges as they sought to live out their professional values. Amongst these values, equity was a recurrent concern and focus for participants, including challenges of providing access to quality care, witnessing inequalities in physiotherapy services, and advocating for improved care. More concretely, participants discussed the difficulty for workers with chronic or overuse injuries to get their claims accepted at the workers’ compensation board. Others mentioned physiotherapy clinics that refused to treat injured workers, or described situations where clinics reduced workers’ treatment and evaluation times or provided a lower standard of care for this clientele. Most participants felt uncomfortable with such practices, but identified the reimbursement model for injured workers, and managerial decisions at clinics, as the sources of these disparities in care. The equity challenges identified by study participants bring forward important ethical issues for the provision of physiotherapy care for injured workers and warrant greater attention and discussion by clinicians and society. The use of an ethical lens in this study highlighted equity concerns and the distress that some professionals experience when working within these systems. An ethical lens should also be used in developing solutions to address these tensions in order to improve access to quality care for all injured workers.
|4:30 pm - 5:00 pm|
Student Meet & Greet Symphonie 4
Student Meet & Greet
Hors d'Oeuvres Ovation Foyer
|5:00 pm - 5:15 pm|
Conference Opening Show Details Ovation
Director of the Centre for Applied Ethics at the McGill University Health Centre (MUHC), Chair, 2017 CBS Conference Organizing Committee
Director of the Centre for Applied Ethics at the McGill University Health Centre (MUHC),
Chair, 2017 CBS Conference Organizing Committee
Dr. Bereza has a background in biology, literature, music therapy, palliative care and family medicine. He completed his bioethics studies and his clinical ethics training as a post-doctoral Fellow at the MacLean Center for Clinical Medical Ethics at the University of Chicago. Dr. Bereza is presently the Director of the Centre for Applied Ethics at the McGill University Health Centre (MUHC), and Associate Professor and Director of the Medical Ethics Program in the Department of Family Medicine. In addition to serving as the current President of the Canadian Bioethics Society, Dr. Bereza chairs the Committee on Ethics of the Canadian Medical Association and the Ethics Working Group of the Canadian Council on Donation and Transplantation. He is also a member of the Ethics Committees of the College of Family Physicians of Canada, the Royal College of Physicians and Surgeons of Canada and the Marketing Practices Review Committee of Rx & D. Dr. Bereza has been an active participant in the development and implementation of medically-assisted dying in Quebec.
|5:15 pm - 5:20 pm|
Welcome Address Show Details Ovation
|5:20 pm - 5:40 pm|
Opening Remarks Show Details Ovation
Former President & Director General, McGill University Health Centre
Former President & Director General,
McGill University Health Centre
|5:40 pm - 6:40 pm|
Opening Night Keynote Speaker and Reception: What is vulnerability? Show Details Ovation
Prof. Samia Hurst
Director, Institute for Ethics, History, and the Humanities, Geneva University (Medical School)
Opening Night Keynote Speaker and Reception: What is vulnerability?
The protection of vulnerable persons is often considered to be a minimal requirement in healthcare, research, and health policy. Yet we have conflicting and sometimes contradictory ideas regarding what vulnerability is or how to protect vulnerable individuals. Understanding different frameworks, and ultimately different components, of vulnerability is key if we are to design appropriate protections.
Prof. Samia Hurst
Director, Institute for Ethics, History, and the Humanities,
Geneva University (Medical School)
Samia Hurst is a physician bioethicist, ethics consultant for the Clinical Ethics Council at the Geneva University Hospitals and director of the Clinical Ethics Unit of the Lausanne University Hospitals, and chair of the Institute for Ethics, History, and the Humanities at Geneva University’s medical school in Switzerland. She is a member of the Senate at the Swiss Academy of Medical Sciences, of the Ethical Legal Social Issues advisory group du Swiss Personalised Health Network, and of the Swiss National Advisory Commission on Biomedical Ethics. Her research focuses on fairness in clinical practice and the protection of vulnerable persons.
|6:45 pm - 8:00 pm|
|7:00 pm - 8:00 pm|
CAPHE Annual General Assembly Symphonie 4
CAPHE Annual General Assembly
|8:00 pm - 10:00 pm|
To Your Health! Personalized Medicine in the Genomics Era Show Details
To Your Health! Personalized Medicine in the Genomics Era
To Your Health! Personalized Medicine in the Genomics Era
Wednesday, May 24, 2017, 8:00 p.m.
Registration RSVP: email@example.com
Come discuss with experts from various fields what is ‘personalized medicine’ and how it can impact your life, your family and your community. Experts will cover prenatal testing, epigenetics, public health and patients perspectives, sharing their past experience and predictions for the exciting — yet complex — future ahead!
Presentations will be in French and English. Questions are welcome in both languages
Thursday May 25th 2017
|7:30 am - 8:30 am|
Breakfast & Poster Viewing Grand Salon Foyer
Breakfast & Poster Viewing
Canadian Paediatric Bioethics Network Meeting Symphonie 4
Canadian Paediatric Bioethics Network Meeting
|8:30 am - 10:00 am|
Plenary Mental Health Panel: "Bridging the gaps: ethics challenges and solutions for working with vulnerable populations" Show Details Grand Salon
Founder, La Maison Bleue
Detention and Twinning Program Coordinator, Action Réfugiés Montréal
President, Médecins du Monde Canada, Psychiatrist & Assistant Professor of Clinical Practice, University of Montreal Health Centre
Moderated by / Modéré par : Matthew Hunt
Director of Research & Associate Professor , McGill University’s School of Physical and Occupational Therapy
Plenary Mental Health Panel: "Bridging the gaps: ethics challenges and solutions for working with vulnerable populations"
The goal of this panel is to explore the ethical challenges associated with confronting multiple vulnerabilities- for instance, assisting a young woman who is a migrant, homeless and suffers from depression- and identify different approaches and solutions to these challenges. Panelists come from leading NGOs who provide services to vulnerable and marginalized populations in Montreal. Discussion will address issues of equity, access and justice while highlighting practical challenges and some innovative solutions to the ethical issues confronted by frontline workers.
La Maison Bleue
Dr. Vania Jimenez is a physician and director of the Family Medicine Unit of the Family Medicine Group du Village de Sante. She has practiced medicine for over 30 years with a multicultural population. As a researcher and a clinician, the influence of culture on illness is a source of fascination for her and constitutes one of the key themes in the numerous projects she participates in. Dr. Jimenez also explores other topics such as the psychology of pregnancy and the relationships between parents and children, an interest which is demonstrated in her constant commitment to obstetrics and the family. In 2007, she founded “La Maison Bleue” a social perinatal center that provides care during pregnancy and the toddler years for families facing difficulties. She is also the author of three novels: Le Seigneur de l’oreille, Le silence de Mozart, et Je suis une pierre brûlante. In 2004, the Association of French-Speaking Physicians of Canada honored her by awarding her the prestigious Merit Medal.
Detention and Twinning Program Coordinator,
Action Réfugiés Montréal
Jenny Jeanes is Action Réfugiés Montréal's Detention and Twinning Program Coordinator. She obtained a BSW and MSW from McGill University, during which she completed internships with refugee claimants at Montreal City Mission and the Committee to Aid Refugees. She joined Action Réfugiés Montréal in 2005 and ever since has been visiting people detained for immigration reasons in the Laval Immigration Holding Centre on a weekly base. Along with law, social work and criminology interns, Jenny provides legal and social support to people in detention, with a priority for refugee claimants and vulnerable people. For many years, Jenny has been actively involved with the Canadian Council for Refugees, of which Action Réfugiés Montréal is a member. For over two years she has been Co-Chair of the CCR's Inland Protection Working Group.
President, Médecins du Monde Canada,
Psychiatrist & Assistant Professor of Clinical Practice, University of Montreal Health Centre
Dr. Nicolas Bergeron has been President of Médecins du Monde Canada since 2006. He is a psychiatrist and assistant professor of clinical practice at the University of Montreal Health Centre. He has specialty training in psychiatry and expertise in post-traumatic stress disorder. His research focuses on delirium during serious illness. Since his appointment to Médecins du Monde, Dr. Bergeron has carried out several missions in Haiti, Nicaragua and the Dominican Republic. Since 2015, he has been actively involved in the development of new projects that address the mental health of people who are homeless or precariously housed. For Dr. Bergeron, Médecins du Monde is a resistance to the disengagement of nation states to take care of the health of the people within their territories, a faith in the creative autonomy of communities and a deeply held commitment to a political medicine in the service of humanity.
Moderated by / Modéré par : Matthew Hunt
Director of Research & Associate Professor ,
McGill University’s School of Physical and Occupational Therapy
Matthew Hunt is the Director of Research and an Associate Professor of McGill University’s School of Physical and Occupational Therapy. He is also an Associate Member of McGill’s Biomedical Ethics Unit and Institute for Health and Social Policy. Previously, he has worked as a physiotherapist in Montreal, North Africa and the Balkans, and as an ethics consultant at four hospitals in Montreal.
Matthew’s research interests are at the intersections of ethics, global health and rehabilitation. He currently leads research projects related to the provision of palliative care in humanitarian emergencies, equity and access to rehabilitation services, and oversight of research in situations of disaster. Matthew also heads a capacity building project for rehabilitation providers in Haiti and co-leads the Humanitarian Health Ethics Research Group (humanitarianhealthethics.net).
|10:00 am - 10:30 am|
Morning Refreshment Break & Poster Viewing Grand Salon Foyer
Morning Refreshment Break & Poster Viewing
|10:30 am - 12:00 pm|
3A : Medical Aid in Dying Show Details Grand Salon
Medical Aid in Dying
Determining eligibility for medical aid in dying: can we and should we evaluate the psychological suffering of another?
Mona Gupta; Samuel Blouin; Suzanne Leclair; Jacynthe Rivest; Marc Chammas
Patients who request medical aid in dying (MAID) in Canada must undergo two evaluations to determine if they satisfy the conditions of eligibility. One of these conditions, under both the Canadian (C-14) and the Québec (Loi 2) laws, is that the person experiences intolerable physical or psychological suffering. What is psychological suffering exactly and how should this be evaluated in the context of requests for MAID? In this presentation we will respond to both of these questions on the basis of a literature review concerning suffering in the context of requests for euthanasia, an analysis of the policy documents preceding the drafting of both bills, and an analysis of the transcripts of parliamentary and committee debates concerning the suffering criterion contained in each law. The wording of the suffering criterion in C-14 points to a purely subjective standard of evaluation: the suffering must be intolerable to the person. The patient decides what is intolerable and the physician's role is to note that she has determined her suffering is intolerable. In this case the criterion is purely symbolic as it cannot be denied. The Québec law's wording is ambiguous [la personne] éprouve des souffrances physiques ou psychiques constantes, insupportables...' opening up the possibility that suffering must be appreciated not only by the patient but also by the two physicians who provide their opinions on her eligibility. According to this interpretation, the physician's role is to attempt to access the person's suffering. We contend that suffering cannot be assessed objectively but that it can be explored intersubjectively. Further, an intersubjective assessment, rather than a purely subjective one, reflects what physicians do in ordinary clinical practice. C-14 and Loi 2 affirm a person’s autonomy in permitting her, under certain circumstances, to determine the timing of her death. However, ethical questions have been raised about the extent to which this concern for autonomy may overshadow the exercise of beneficent and non-maleficent action. That is, in an attempt to respect autonomy by providing medical aid in dying, one might unwittingly overlook certain vulnerabilties leading people to request this intervention e.g a wish for suicide caused by a mental illness, or as a result of pressure by others. We will argue that the purely subjective standard of suffering of C-14 offers less protection to vulnerable persons than the intersubjective standard implicit in Loi 2. We conclude that an intersubjective standard for evaluating suffering is better able to strike a balance between competing ethical imperatives.
Medical Aid in Dying: What is the Role of Clinical Ethics?
As of June 2016, physician-assisted death, or medical aid in dying (MAiD), is legal in Canada. There are questions regarding the role of clinical ethics vis à vis MAiD, questions regarding the role of clinical ethics with respect to specific requests for MAiD, and with respect to the implementation of MAiD in general. At least at many health care institutions in Canada, there exists the general expectation that clinical ethicists will be involved on both fronts. In this paper I argue that while clinical ethicists should offer input on the development of legislation and policy on MAiD, it is less clear what is the role of the clinical ethicist in individual cases of requests for MAiD. More specifically, I argue that various suggestions regarding the possible role of clinical ethics when it comes to such requests align clinical ethics too closely with spiritual care, procedural oversight, and/or patient advocacy. This is not to say that clinical ethics should have no role whatsoever when it comes to particular requests for MAiD. It may well be that especially given the newness of the implementation of this practice in Canada, it is appropriate that clinical ethics be involved in at least certain types of individual cases. It is to suggest, though, that what its role ought to be is not as straightforward as it might appear. During my presentation of the paper, I will engage the audience on the question of clinical ethics’ most suitable role in this regard, and am most interested in hearing not only from clinical ethicists with experience with MAiD on either the policy front or on the level of particular cases (or both), but also from those working in areas other than clinical ethics. This paper addresses the conference theme of vulnerability and “Falling Through the Cracks.” The ethical dimensions of MAiD are ones that involve, in many cases, some of our society’s most vulnerable (such as the elderly). It is my view that clinical ethicists becoming clear on their role with respect to MAiD is a way of safeguarding the interests of the vulnerable. Without such clarity, there is more room than there would otherwise be for the voices of the vulnerable to be overridden in this domain. This is because clinical ethics is more likely to inadvertently endorse certain ideologically driven positions on the general issue of MAiD in situations in which its role is unclear to clinical ethicists themselves. My topic, then, addresses not only a pressing topic for Canadian bioethicists, but also the conference theme.
3B : Ethics of Healthcare Practice Show Details Symphonie 1
Ethics of Healthcare Practice
The conscientious care provider: Advancing bioethics education through a phenomenological approach to conscience care provision.
The 28th Annual Canadian Bioethics Society Conference Abstract Submission Contemporary health care contexts are ethically complex and challenging. Frequently, health care professionals find themselves facing ethical problems, dilemmas and conflict that impacts their conscience. A fundamental concept to bioethics, conscience is emerging empirically as a phenomenon that is in need of attention owing to diverse perceptions of what it is and how health care professionals can attend to it in clinical practice. Given the morally pluralistic quality of today’s health care settings and Canada’s socio-political landscape, conscience often emerges as a contentious topic associated with challenging issues around claims of conscience and conscientious objection. Yet, little attention has been paid in the literature and in empirical ethics to the positive elements that conscience can emit in driving forward quality, patient care through transparency of professionals’ ethical practice. At a time when margins of vulnerability are becoming increasingly evident for staff and patients alike due to staffing shortages and budget constraints, health care professionals are at a higher risk for withdrawing from their clinical practice due to stress arising from conscience issues, leaving patients vulnerable from strained human, health resources. One approach to narrowing the margin of vulnerability between conscientiously conflicted health care professionals and increasing patient care needs is to promote bioethics education on conscience as a concept predicated on supporting health care professional’s ethical practice. To support this approach, a phenomenological appreciation for conscience will be advanced in this presentation as an epistemology for bioethics education. The objectives of this presentation include: 1) landscaping the current, conscience issues that Canadian and Global Health care professionals can encounter, 2) the relevance of conscience based ethical issues to patient care needs and, 3) educational strategies for advancing an epistemological, bioethical response to conscience related practice issues. Understanding conscience as a shared experience as supported by interpretive phenomenology can augment the contentions surrounding individual claims to conscience, offering new ways of comprehending conscience, conscience related issues and conscience-driven care. Supporting health care professionals’ understanding of conscience and conscience driven practice through an educational initiative serves to promote the integrity and transparency of professional, ethical practice, creating room for open dialogue in formal and ongoing education that can transfer over to clinical practice settings. Providing excellent care provision requires robust ethics education and health care professionals who can make ethical care decisions in salience with their conscience and patient care needs. This presentation and its potential for driving forward bioethics education is a positive strategy in showcasing ethical salience and transparency for professional practice and patient care alike.
Healthcare Professional (HCP) Capacity Evaluation Perspective
Dawn Van Engelen, MHSc Student Investigator Daniel Buchman, PhD, Principal Investigator
Introduction: The evaluation of decision-making capacity or 'capacity' holds significant clinical, ethical, and legal importance in healthcare. Despite this importance, capacity evaluations and the process to determine incapacity appear to be conceptually challenging and poorly understood by healthcare professionals (HCP). Over the last 20 years, the HCP practice of evaluating capacity has moved from a peripheral aspect of patient care to an embedded responsibility of daily clinical work. Inconsistent and inaccurate determinations of capacity result in infringement on a patient's autonomous choice and put into question informed consent to select, discontinue, or refuse medical treatment options. At this time there is limited research that explores HCPs' attitudes, intuitions, beliefs, and judgements toward capacity and conducting capacity evaluations, particularly in Ontario. This presentation will report on the preliminary findings of a qualitative project aimed at exploring the capacity knowledge gap, the attitudinal barriers, and the challenges present in daily professional practice. By identifying and addressing these components, all members of the healthcare team can be better prepared to fulfill their clinical, ethical and legal obligation and ensure no capable or incapable patient falls through the cracks. Methods: Study participants included non-physician, regulated healthcare professionals such as social workers, nurses, dietitians, pharmacists, occupational therapists, physiotherapists, and speech language pathologists working in a tertiary care hospital in downtown Toronto. This sample was selected due to the lack of literature available on their perspectives and due to their professional obligations as outlined by the HCCA 1996. Participants attended a focus group where personal and professional attitudes, intuitions, beliefs, and judgements were explored and recorded. Focus group responses were analyzed using interpretive description to capture common themes and patterns within the responses. Anticipated outcomes: Findings from this study will contribute to an understanding of how HCP perceive capacity and capacity evaluations within their daily clinical work. It will inform clinical practice by increasing personal and professional awareness and provide insight into the attitudinal barriers that may exist around evaluating capacity. The findings will help the HCP understand how capacity evaluations are viewed by members of the healthcare team and how an effective practice change can be communicated and supported through education. Personal and professional enablers and barriers will be identified to provide guidance on directing quality patient-centered care, upholding professional obligations, and maintaining professional integrity.
3C : Ethics and Neurodevelopmental Disabilities Show Details Symphonie 3A
Ethics and Neurodevelopmental Disabilities
Developing an autonomy-support tool for transition from paediatric to adult health care systems for youth with neurodevelopmental disabilities
Aline Bogossian, Eric Racine
Amidst a growing body of scholarship documenting the ethical challenges in transition programs from paediatric to adult health care systems, the importance of fostering autonomy and decision-making in adolescents is paramount (Racine et al., 2014). However, little is known about the factors involved in the development of autonomy and decision-making in young adults, nor how those can be supported. Similarly, little evidence exists on how ethics are integrated in transition programs (Grant and Pan, 2011) and how ethical outcomes can be measured (Racine et al., 2014). The aim of this presentation is to demonstrate the development of a novel autonomy support tool and an ethics intervention study focused on transition care services. Transition from paediatric to adult health care systems is a time in which the young person is called upon to increase their independence, separate from parents, and accept responsibility for complex decisions. For youth with neurodevelopmental disabilities, the period of transition represents both social and ethical challenges (Racine et al., 2014). The ethical principle of respect for autonomy implies that individuals should be free to make informed decisions about the care they receive and that their decisions must be respected. Within transitional care programs, the goal of transition readiness holds taken-for-granted values about independence and autonomy that may not be congruent with the values and preferences of youth with neurodevelopmental disabilities. There is a growing recognition of the need to tailor transition programs to match individual needs, goals and values to the extent that it is appropriate and possible. Yet, to date, no research has examined how transition programs respond to and respect youths’ values and preferences about autonomy. The aims of this presentation are three-fold. First, we will outline the development of a novel ethics tool focused on supporting autonomy in transitional care programs. Second, we will discuss the lack of precedent yet importance of developing interventional research in ethics. Finally, we will present a study protocol for a mixed-method ethics intervention study designed to identify important factors and measure their impact on youth outcomes. By so doing, we will demonstrate how interventional ethics can support existing transitional programs to ensure the smooth transition of youth to adult care systems in a way that respects their preferences and ensures equitable access throughout the transition period.
Working with Families and People with Autism to Promote Ethical Research with Participants on the Autism Spectrum
M. Ariel Cascio, Jonathan Weiss, and Eric Racine
OBJECTIVE: This talk describes a study whose goal is to propose a model of best practices for research involving participants with autism, using a “person-oriented research ethics” approach. BACKGROUND: Vulnerability is an important concept in research ethics, particularly as expressed through the notion of vulnerable populations (US DHHS) and individuals in circumstances of vulnerability (Canadian TCPS). Particular participants may be vulnerable to coercion or undue influence when invited to participate in research, but may also be vulnerable to unfair exclusion from research. This talk considers one such category of persons who may be considered vulnerable: people with autism spectrum conditions (ASC). ASC may raise particular issues in research ethics and research participation due to the core characteristics of ASC: impairments in social communication and interaction; and restricted, repetitive patterns of behavior, interest, or activities including atypical sensory experiences. For example, communication atypicalities may impact communication about informed consent; and atypical sensory experiences may lead to increased anxiety regarding particular protocols. METHODS: This study involved a critical-interpretive literature review (following Rosalind McDougall) of research, scholarship, and guidelines on conducting research with people with ASC. Findings from the literature search were analyzed along five principles of person-oriented research ethics, a model developed by the first and third authors based on clinical and research ethics literature. The results of the literature review were then shared with a deliberative task force of researchers, people with autism, and family members. Task force members provided feedback and directions for further targeted inquiry, which the researchers undertook. The researchers and task force are collectively developing a model for best practices. RESULTS: A draft of this model of best practices will be presented in this talk, as well as reflections on the process of composing and collaborating with a deliberative task force. This model of researcher-participant community partnership will help to ensure that potential research participants with autism do not “fall through the cracks.” It also honors the disability rights’ call for “nothing about us, without us,” by providing researchers with a toolkit for proposing and conducting research about ASC that involves people with ASC.
Institutionalizing the De-Institutionalized: Health Equity Impacts of Social Inclusion Policy on Older Adults who have Autism
The goal of this study is to examine the unintended health impacts of the Services and Supports to Promote the Inclusion of Persons with Developmental Disabilities Act (2008) on older adults with Autism has influenced how they, their caregivers and service providers meet their needs. Canadian public health values are built on social justice and equity. This research employs a structural functionalism framework, rooted in structural lag theory, whereby social inclusion policy and the actual implementation of inclusion are at odds because policy promoting inclusion are further progressed than the research, tools and supports which inform and facilitate implementation of the policy. In his investigation in response to complaints about the services and supports available to adults who have developmental disorders, Dubé (2016) concluded that deinstitutionalization of care for adults who have developmental disorders has resulted in “institutionalization by default” (p.5), whereby individuals are placed inappropriately in long-term care homes, nursing homes, psychiatric wards and prisons due to insufficient access to suitable care, services and supports in the community. Developing and providing suitable care to adults who have Autism has been particularly challenging, due to a dearth of research on older adults who have Autism (i.e., 35 years old and older) (Piven & Rabins, 2011). The research questions posed include: 1) what are the health equity impacts of social inclusion policy among adults who have Autism and their caregivers?, 2) how are they experiencing social inclusion policy? And 3) what needs are being met/not being met? This study employs a mixed-method approach, using the first three phases of Health Equity Impact Assessment tool (HEIA) as a framework. The HEIA was developed by the province of Ontario as a means of conducting an assessment of the unintended health impacts (positive and negative) of any given policy (Tyler et al., 2014).
3D : Surgical and Transplant Ethics Show Details Symphonie 3B
Surgical and Transplant Ethics
Splitting Livers Between Transplant Recipients: Ethical and Logistical Considerations
Jed Adam Gross, JD, MPhil and Evelyn M. Tenenbaum, JD
Ordinarily, solid organs are transplanted whole from one donor to one recipient. Livers need not be. Characteristics of the human liver, notably its ability to regenerate, allow some patients to derive long-term benefits from less than a whole liver. It is this property that makes living donor liver transplantation possible. Deceased donor livers can also be surgically split, not with the objective of preserving the donor's liver function, but in order to benefit two recipients or to create a liver volume suitable for a smaller recipient. This presentation examines the ethical and practical implications of split liver transplantation from deceased donors. Two considerations loom large over organ allocation policy: expected medical outcomes and equitable access. Additionally, the field of transplantation is motivated by a powerful rescue impulse. We posit that these values do not contraindicate split liver transplants and may favor more of these procedures in the North American milieu. The impact of split liver transplantation on individual and aggregate patient outcomes is an empirical question that turns on contingencies such as donor and recipient selection criteria. Nonetheless, literature implies that splitting livers can increase the total number of recipients benefiting from liver transplantation. While the equitable analysis is similarly complex, split liver transplantation should benefit hard-to-match recipients who are disadvantaged through no fault of their own. Hence, in conditions of scarcity, split liver transplantation is ethically supportable in light of its anticipated benefits for patients who would otherwise "fall through the cracks." Indeed, notions of responsible stewardship may logically call for wider use of this set of techniques. Why then, we ask, are split liver transplants not more common? We propose that the primary barriers are not philosophical objections, but rather allocation criteria that were not designed for split organ transplantation, combined with capacity limitations such as limited surgical expertise. Throughout Canada and the United States, livers are allocated based on some version of the Model End Stage Liver Disease (MELD) score as a rule with specified exceptions, for example recipients with hepatic cell carcinoma. Because good opportunities for split liver transplantation are transitory, more fully capitalizing on these opportunities may require a new exception to the MELD-based system. Tradeoffs between potential recipients would have to be managed equitably. Additionally, patient education and informed consent mechanisms may require further tailoring to provide potential recipients with a realistic view of split liver transplantation, including its comparative risks and potential benefits. We will conclude by identifying and assessing potential mechanisms for expanding access to split liver transplantation in carefully controlled conditions.
Professional Oversight of Innovative Surgical Practice in Toronto: An Update
Martin F. McKneally, Shaf Keshavjee
Abstract for Canadian Bioethics Society meeting, Montreal, May 24-26, 2017 “Professional Oversight of Innovative Surgical Practice in Toronto: An Update“ Martin F. McKneally, Shaf Keshavjee Thirteen years ago, at the Montreal meeting of CBS, we proposed an innovative method of professional oversight of Surgical Innovation. The essence of the proposal was reliance on the established oversight practices of surgery: credentialing, advance publication of scheduled operations, audit, Morbidity and Mortality conference, and collegial oversight of performance, plus review of the surgical consent form by the REB. The responsibility for oversight was left with the Surgeon-in-Chief [SIC], advised by an unconvened task force of stakeholders from anesthesia, nursing, engineering and law. [“Protecting participants in surgical innovation: Ideas and experiments from Canada and the United States.” McKneally MF, Kornetsky S. CBS 2003]. After thoughtful discussion, the proposal was clarified and largely accepted by the conference participants. Over the past decade or more, we have evolved a more thorough review process, including the addition of a regularly convened Operating Room Innovation Committee, which includes surgeons and interventional imaging specialists. We have developed a closer liaison with the REB. The process has been well accepted and adapted by other hospitals within our university community. We will report on the experience of a learning community of four teaching hospitals in the University of Toronto system, recounting the problems encountered and the lessons learned. Though we started off focusing on innovative surgical procedures, we soon learned that our surgeons were being asked to introduce new implantable devices, new surgical instruments, and to collaborate with institutions and industry on patent applications and cost control for these innovations. We originally excluded “first in man” innovations, reserving those to the REB for adjudication. This proved too deferential to convention, as the innovation pathway opened a gate for novel interventions beyond the jurisdictional boundaries and evaluation capacity of the REB. Conflicts of Interest led us to introduce external review from outside the institution in order to allow the SICs and their partners to innovate. The initial requirement that two colleagues endorse the innovation proved too stringent, as one innovator, whose novel outpatient awake craniotomy operations are now accepted worldwide, could not convince his partners to endorse his innovation. The institutional memory provided by using a stable advisory group of informed reviewers, and the Enforceability Condition, [as described by Daniels] provided by the SIC as chair and voice of the committee proved exceptionally advantageous for rapid reporting of outcomes, morbidity and mortality. Examples of applications for approval of Surgical Innovations will be presented to the audience for their contributions to the development of this innovative pathway of oversight.
Human organs developed from human-animal chimera embryos for transplantation: Hopes and ethical concerns
Aliya Affdal PhD(c); Marie-Chantal Fortin MD, PhD; Vardit Ravitsky PhD
In August 2016, the US National Institutes of Health (NIH) announced that it is considering lifting of the moratorium on research involving chimeric human/non-human embryos. Such a decision would result in federal funding of research on chimeric embryos containing a combination of cells from human and non-human animals. This research involves introducing human pluripotent stem cells into animal embryos at a very early stage, allowing these cells to potentially be expressed in any part of the animal as it develops, creating an organism that is part animal part human. Such human-animal chimeras have the potential to become a source of organs for life-saving transplants and consequently save life and be a solution for the worldwide shortage of organs. The use of organs generated from chimera embryos raises several ethical concerns related to both humans and animals. At the human level, there is uncertainty related to the benefits and the outcomes of transplantations performed with organs from chimera embryos. Also, there is a risk of transmission of infections from the animal to the humans and these infections could be a threat for the public health. We have to take into account the vulnerability of patients waiting for a life-saving transplantation (who could die without the transplantation) and develop safeguards in order to allow these patients to provide informed consent to a clinical trial using organs from chimera embryos. The transplantation using organs grown in animals questions the social representation of the potential organ recipient. Furthermore, the creation of chimeric animals for organ harvesting purposes raises concerns with regards to resource allocation. Should we invest money in awareness-campaigns for organ donations (from humans) and the prevention of disease leading to end stage organ failure rather than investing it in risky experimental techniques that may pose a threat to animal welfare? At the animal level, concerns are raised with respect to the welfare, the moral status, and the rights of the animals. The use of animals to harvest organs for transplantation results in their death but should not involve unnecessary suffering. Further, questions arise regarding the moral status of the non-human animal created from both animal and human DNA. How should this creature be perceived considering the fact that it contains human DNA which can be expressed anywhere in its body, including its nervous system? Other concerns touch on the possible migration of the human stem cells into the brain of the animal, which could result on some form of human consciousness or cognition. Additionally, these stem cells have a low potential to develop human sperm and human eggs in the animal. This presentation will explore the ethical challenges raised by human organs developed from human/non-human chimera embryos.
3E : Research Ethics Show Details Symphonie 4
Blurred boundaries and hesitant conversations: lessons learned in trauma-informed research with women from vulnerable populations
Julie Carlson, MSW, Leah Douglas, PhD, and Sabina Sodhi, MSW
Blurred boundaries and hesitant conversations: lessons learned in trauma-informed research with women from vulnerable populations Julie Carlson, MSW, Leah Douglas, PhD, and Sabina Sodhi, MSW In our role as social workers, women with concurrent disorders (mental health and substance use concerns) routinely shared that they felt they were being treated unjustly, or in ways that did not maintain their dignity in the health care system. These anecdotes, together with published findings demonstrating stigma and stereotyping from some health care professionals toward people with concurrent disorders led us to propose and conduct a qualitative study to better understand women’s perspectives and experiences in receiving hospital care. The women interviewed in this study did not use the term 'stigma', however all described experiences of discrimination in their contact with health care, particularly their experiences in Emergency. As the interviews proceeded, we started noticing that many of the participants were recounting experiences that appeared to be traumatic in nature, both in relation to hospital stigma and the context of their lives. We encountered unanticipated levels of distress in many of our participants. Several women also expressed being activated by the interview itself. It is also of note that we interviewed all of our participants in hospital, which poses challenges of its own. As feminist researchers, we wondered about the ethical implications of interviewing women with concurrent disorders in this environment. We sought direction from the literature, which offered few models for trauma-informed research interviews with vulnerable women, including those with concurrent disorders. As we conducted the interviews we found that we needed to adjust our interview process in order to respond to the participants in ways that we believed were ethical, and created safety and support. We were left with many ethical issues and questions in this process, and experienced tension with regard to the application of our trauma-informed lenses in a research context. In this presentation, we will summarize some of the unresolved ethical issues and compelling questions that this research raised. These include: What are our boundaries, with respect to research and social work practice with women who are vulnerable, including those with concurrent disorders? How can we best move back and forth between “social worker” and “researcher” during these interviews? Are we re-traumatizing women in the process of asking the questions? How do we best conduct a trauma-informed research interview with vulnerable women, including those with concurrent disorders? Are participants safe and supported in hospital, post-interview? What are our responsibilities to them, to promote healing and safety, instead of re-traumatization? What expectations do the women have of us, as researchers and social workers? How is this influencing the process? This presentation will also propose recommendations for ethical trauma-informed research interviews with vulnerable women.
3F : Ethics of Harm Reduction Show Details Symphonie 2
Ethics of Harm Reduction
Regulating Wrongdoing: A Utilitarian Argument for the Operation of Safe Injection Sites
Public discussion on the standing of safe injection sites (SIS) in Canada is on the rise. The push to open such facilities has recently been strengthened due to, (A) the increasing number of overdose deaths, and HIV (human immune-deficiency virus) and HCV (Hepatitis C Virus) infections found within vulnerable drug injecting communities in many parts of Canada, and (B) empirical studies proving that Insite, the main SIS in Canada, has been successful in mitigating the aforementioned conditions. The issue, however, is not only a question of effectiveness, but also a question of equity and ethics, yet there is still a lack of contribution from moral philosophy to inform drug policy on this matter. To fill this knowledge gap, this paper attempts to answer the question of whether safe injection sites ought to continue to operate (and be expanded) in Canada, with one of its main objectives being to explicate the philosophical underpinnings, as well as the values informing the debate. Filling in this gap will, (1) strengthen (by providing a value-based foundation) the arguments put forth in favour of or against the operation of safe injection sites (that mainly have to do with effectiveness), and (2) facilitate action at the policy level to comprehensively address and provide fair solutions to the vulnerabilities that are challenging long-time drug users such as the inability to access basic healthcare resources, housing, and addiction counselling services. After the philosophical foundations are established, I argue for the continuing operation and expansion of safe injection sites in Canada. The following utilitarian justification (in standard, simplified form, below) is offered and defended in this paper: Premise 1: Drug policies should be based on the model that will lead to the best possible consequences for everyone involved. Premise 2: The harm reduction model, giving rise to the policy allowing for the operation of safe injection sites, has better consequences for everyone involved (drug users, and society) than the absolute criminalization policy derived from the abstinence model. Conclusion: Safe injection sites should continue to operate and expand. The particular Millian-utilitarian argument I use and develop in this research paper works together with the 'regulating wrongdoing' argument proposed by philosophers Henry Shue and Helen Frowe. Forming the central point of the harm reduction principle, the regulating wrongdoing argument posits that, "Given that people are going to engage in ... [a] wrongful act, we must focus our efforts on minimising the harm they cause, even if the best way to do this is to grant that they may legally cause some harms, but not others."(Frowe, Ethics of War and Peace, 2011), the reason for this being that consequences matter to morality. The benefits and shortcomings of this argument, within the drug policy context, are discussed.
Using PrEP for HIV Prevention among MSM: Risks, Relationships and Responsibility
In this paper, I explore the ethics of using pre-exposure prophylaxis (PrEP) as HIV prevention for men who have sex with men (MSM). Although the medical concerns about the ethics of PrEP may take precedence over the social concerns, there is a growing body of literature that addresses the medical concerns. Therefore, I focus on the often overlooked social dimension of the ethics of PrEP. I argue that PrEP increases access to the goods of sex and romantic relationships for MSM and reduces the stigmatization of HIV positive people and people who are at high risk of contracting HIV.
|12:00 pm - 1:30 pm|
Special Presentation by Members of the CIHR Standing Committee on Ethics Show Details Grand Salon
Special Presentation by Members of the CIHR Standing Committee on Ethics
As part of a continuing dialogue with the ethics research community, members of the CIHR Standing Committee on Ethics (SCE) will present an update on CIHR’s activities in the area of ethics and recent Expert Panel reports, and lead a discussion on priorities for the future. There will be ample time for your questions and comments. Specifically, Paul Lasko will summarize the report of CIHR’s International Peer Review Expert Panel and the Naylor Report on Canada’s Fundamental Science Review; Vardit Ravitsky will present CIHR’s Ethics Performance Measurement Annual Report (2015-2016); Nicolas Fernandez will present progress on the Patient Engagement in research and ethics project; Vardit Ravitsky will showcase the SCE’s Human Germline Gene Editing: Points to Consider from a Canadian Perspective document. Judy Illes will invite the audience to identify emerging ethical issues of strategic relevance within CIHR’s mandate for SCE’s consideration, and to catalyze conversation in the health ethics community.
Boxed Lunch & Poster Viewing Grand Salon Foyer
Boxed Lunch & Poster Viewing
Student Business Meeting (incl. election & lunch) Symphonie 4
Student Business Meeting (incl. election & lunch)
|1:30 pm - 3:00 pm|
4A : Pediatric End-of-Life Show Details Symphonie 1
DOES THE PEDIATRIC EMERGENCY DEPARTMENT HAVE A ROLE IN PEDIATRIC PALLIATIVE CARE?
COTE, Anne-Josee, GAUCHER, Nathalie, PAYOT, Antoine
BACKGROUND Very little is known regarding the role of the pediatric emergency department (ED) in pediatric palliative care (PPC). METHODS Interdisciplinary semi-structured focus groups were held with healthcare providers from pediatric emergency medicine, pediatric palliative care, pediatric complex care and pediatric intensive care to develop understanding on the role of the pediatric ED in providing PC. Exploratory open-ended questions introduced naturally occurring discussions and interaction in each group. Data was transcribed in full and analysed using NVivo© software. Data analysis was performed by thematic analysis and theoretical sampling. RESULTS From January to October 2016, 58 participants were interviewed; most were female nurses and physicians. ED providers seek to maintain continuity of care and uphold pre-established wishes throughout PPC patients’ ED visits by listening and supporting the patient and family, evaluating the clinical situation, communicating with primary care teams and organising rapid admissions to wards. Some ED providers recognized having no choice to provide palliative care approach under certain circumstances despite thinking it might not be part of their culture and role. Each interdisciplinary team demonstrated particular values and experiences, influencing their understandings of the ED’s role in PPC; continuity of care is complicated by these distinct philosophies. Limitations to providing PPC in the ED are related to unsuitable physical environments, lack of uninterrupted time, efficiency expectations, unknown patients, provider lack of knowledge and moral distress surrounding initiating discussions about goals of care. Solutions were directed at improving communication between and within teams as well as humanizing care by developing a sensibility to quality PC in the pediatric ED. CONCLUSION Although the perspective of pediatric ED’s role in caring for PPC patients is heterogeneous, several barriers to providing high quality emergency PPC can be overcome. Future studies will explore the experiences of PPC families presenting to the ED.
COMPLEMENTARY OR DIVERGENT? ACUTE AND LONG-TERM HEALTHCARE PROVIDERS’ BELIEFS ABOUT PEDIATRIC PALLIATIVE CARE
CÔTÉ, Anne-Josée, GAUCHER, Nathalie, PAYOT, Antoine
BACKGROUND Continuity of care in pediatric palliative care (PPC) is complex, especially when critical care providers become involved during acute unexpected health events of children suffering from chronic conditions. OBJECTIVE To explore acute care and long-term care services’ underlying culture and to compare their opinions about PPC. METHODOLOGY A qualitative study was conducted from January to October 2016. Six semi-structured focus groups were held with naturally occurring interdisciplinary carers from pediatric emergency department (ED), pediatric palliative care, pediatric complex care and pediatric intensive care unit (PICU). Themes emerged with open-ended questions and discussions. Verbatim transcription and thematic analysis were performed with NVivo© software. RESULTS Fifty-eight participants were enrolled. Each group demonstrated different culture according to their own experiences and roles. Healthcare providers from acute care services manage ambiguous situations while having to take rapid decisions concerning previously unknown patients. Healthcare providers from long-term care services interact as an interdisciplinary team to accompany families and ensure quality of life and best interest of the child. Definitions of PPC were suggested by all participants and were overall similar: to provide active complementary care early in the illness trajectory, focusing on caring for the child as a whole and establishing trustful relationships with families. Most healthcare providers expected families’ experiences to follow a linear path, ultimately leading to discussions about end-of-life goals and withholding of aggressive therapies. Each group emphasised their own struggles discussing goals of care (GOC). The inevitability of having to validate previous desires during acute health events was recognised across all groups. However, most acute care providers reported frustrations and discomfort when having to introduce discussions about GOC for the first time in a patient’s life. Long-term care teams suggested that rapid clinical judgments on patients’ quality of life by acute care teams are hard to receive by families. Two approaches of PPC were suggested: some healthcare providers hoped to have a full-time designated specialised team to manage patients, while others suggested PPC is a transversal approach to patient care, which should be provided by all. CONCLUSION PPC is well recognized and understood by healthcare providers from different specialties. Acute care providers often encounter PPC patients at their worse; continuity of care and quality of interactions with families are challenged by their lack of knowledge about family values and previous discussions on GOC.
Promoting empathy and compassion in end-of-life scenarios in Neonatology: parental and providers's perspectives
Marie-Hélène Lizotte, MD,; Thomas Pennaforte, MD; Keith Barrington, MD; Ahmed Moussa, MD, MSc; Christian Lachance, MD; Serge Sultan, PhD; Maia Sureau, LLB and Annie Janvier, MD, PhD.
Title: Optimizing communication with parents during and after an unsuccessful neonatal resuscitation: parents and providers perspectives Marie-Hélène Lizotte, MD, Thomas Pennaforte, MD, Keith Barrington, MD, Ahmed Moussa, MD, MSc, Christian Lachance, MD, Serge Sultan, PhD, Maia Sureau, LLB and Annie Janvier, MD, PhD. 1Université de Montréal, Hôpital Sainte-Justine, Montreal, Quebec, Canada. Background: Providers are urged to communicate with empathy and compassion when having difficult conversations with parents, generally without practical suggestions. Objective: Investigate communication with parents during and after an unsuccessful neonatal resuscitation leading to death. Design/Methods: The 31 Participants were healthcare providers with various expertise in neonatal resuscitation. They were invited to lead a videotaped mock code, where they would resuscitate a baby manikin. A cesarean section was performed for fetal distress in the presence of parents (standardized actors). The manikin remained pulseless despite adequate resuscitation. The simulation session included communication with the parents after resuscitation was discontinued. 21 evaluators quantitatively and qualitatively scored each participant. -6 parents whose baby had died in the NICU and the 2 actors (SP) -1 neonatologist, 1 fellow, 4 NICU nurses -7 non-NICU health-care providers: obstetricians, social workers, spiritual care specialists and psychologists Results: 31 participants were evaluated by 21 evaluators, leading to 651 evaluations On average, neonatologists were those who were found to provide optimal communication. Communication was judged to be much better after the resuscitation than during the resuscitation. Communications skills in 19% of participants were scored differently by provider-evaluators compared to others (parents and actors). For example, a participant asked the father to perform cardiac massage and was only judged favorably by SP evaluators; conversely some participants were given high scores by providers but used language that was not understood by non-provider evaluators "there is no heart", "your baby expired". "top 10" communicators adopted similar behaviors. These behaviors were strongly related to the words « Empathy », « compassion », « ethical », « warm » and « human » in the qualitative open-ended evaluations. VERBAL COMMUNICATION :Introduces themselves; Uses the baby's name; Clearly mentions the death ("Jason is dead"); Tells parents they could not have prevented this; Acknowledges parents' emotions. NON-VERBAL: Listens; respects silence; Establishes proximity (provider-parent, parent-baby); Remains calm. SPECIFIC ACTIONS: Lets father approach during resuscitation; Prepares parents for the death; Decides when to stop resuscitation (does not ask parents); Sits down; Establishes eye contact; Answers parents' questions; Asks parents about potential visitors Conclusions: During a neonatal end-of-life scenario, many simple behaviors -identified by parents and providers- can optimize provider-parent communication.
4B : Ethics of Healthcare Practice Show Details Symphonie 3A
Ethics of Healthcare Practice
Beyond superficial care: Creating therapeutic relationship in the context of standardized care
Julie Carlson, MSW RCSW, Lynn Musto, PhD(c) RPN RN
As mental health care practitioners and researchers, our purpose is to critique the standardization of clinical practice and its impact on the therapeutic relationship. Therapeutic relationship is a critical aspect of care, particularly with vulnerable populations, and is known to influence patient outcomes. It is our intent to make recommendations for ethical theorizing in the context of therapeutic relationships, vulnerability, and patient outcomes, as well as recommendations for further research, policy and practice. For the past two decades standardized care, (i.e. care paths), has been viewed as a means to increase the quality of care patients receive and as a way to rationalize, or contain the cost, of health care services. Governmental health ministries responsible for the delivery of health care services have turned their efforts towards standardizing treatment options available for those who struggle with mental health, social issues, and chronic medical conditions in an effort to meet the rising needs of the population and contain the costs of these services. Although the desire for effective and efficient care is understandable, a number of concerns have been raised about the impact of standardized care. One concern is that the standardization of care is leading to a decrease in the quality of care due to taking a limited scope in the formulation of patients’ needs. It is also criticized as reducing the options for treatment down to an intervention that is supported by a narrow view of evidence based research. Concerns also exist that standardized care assumes that everyone can achieve similar results, thereby not acknowledging differences, and failing to meet the needs of a number of patients, many of whom belong to vulnerable populations. Criticisms have been posited about the power dynamics/structure involved in decision-making regarding the standardized care that will be provided. Consequently, Clinicians have raised the concern that standardizing care limits their ability to use clinical judgment in responding to the needs of their patients. In our clinical observations and review of the literature, standardized care is focused on technique/approach and does not clearly articulate or often place significant overt value on relationship. Research shows that the provider-patient relationship is an integral factor in positive patient outcomes. Our concern is that relationship often does not get the required focus within the framework of standardized care as it is currently understood and implemented. Building relationship with patients from vulnerable populations, particularly those with traumatic histories, is challenging and requires particular care and attention. Standardizing care may especially impact these vulnerable patients. Ethically, healthcare professionals have a fiduciary responsibility to foster positive patient outcomes and we will demonstrate that a focus on developing therapeutic relationship is necessary to this process. Our presentation will highlight a gap in literature and theory regarding the impact of standardization on the therapeutic relationship and related outcomes. We will draw on examples from our clinical experience and offer approaches to policy and practice that can be explored as a means to retain focus on the therapeutic relationship in the context of standardized care.
Comment, en tant que professionnels de la santé, actualiser son devoir d’advocacy sans nuire à l’autodétermination des patients vulnérables?
Marie-Josée Drolet et Anne Hudon
Les patients se retrouvent parfois dans une position de vulnérabilité qui limite, en tout ou en partie, leurs capacités à défendre par eux-mêmes leurs droits et intérêts. Cette position de vulnérabilité, dans laquelle certains patients se trouvent, peut être la résultante de leurs problèmes de santé, mais elle peut aussi découler du fait que certains patients vulnérables sont peu familiers avec le système de santé, ont parfois peu de pouvoir dans la relation thérapeutique et possèdent une connaissance qui peut être limitée de leurs droits. Dans ce genre de situation, certains professionnels de la santé entreprennent d’actualiser leur devoir d’advocacy pour soutenir ces patients vulnérables dans la défense de leurs droits et intérêts. Dans le contexte où les référentiels de compétences des professionnels de la santé formulent le devoir d’advocacy qu’ont ces derniers de défendre les droits et intérêts des patients – d’exercer autrement dit des activités d’advocacy – cette avenue se révèle pour ces professionnels naturelle, voire essentielle. Pourtant, certains auteurs considèrent que cet élan altruiste peut nuire à l’autodétermination des patients. Sur la base de bonnes intentions, en défendant les droits et intérêts des patients, des professionnels de la santé en viennent paradoxalement à accentuer la position de vulnérabilité de certains patients. Ils cristallisent en quelque sorte ces derniers dans une position de dépendance à leur égard. Une question dès lors émerge : Comment, en tant que professionnels de la santé, actualiser son devoir d’advocacy sans nuire à l’autodétermination des patients vulnérables? Cette communication a pour objectif de présenter un débat qui a cours dans les écrits entourant ledit devoir d’advocacy des professionnels de la santé, tout en développant un argumentaire visant à soutenir ce devoir sans toutefois nuire à l’autodétermination des patients vulnérables. Cet argumentaire, qui a été développé sur la base d’une recension des écrits, vise au final à repérer des moyens permettant de conjuguer cette double exigence (devoir d’advocacy et soutien à l’autodétermination des patients vulnérables) et pouvant être mis en pratique par les professionnels de la santé. Cette communication présentera ces moyens qui entendent guider les professionnels de la santé pour qu’au final les patients vulnérables soient en mesure de défendre, en tout ou en partie, leurs droits et intérêts, et ce, pendant et après les interventions. En bref, maints professionnels de la santé choisissent leur profession pour des raisons altruistes. Ce faisant, ils peuvent être amenés à exercer leur devoir d’advocacy sans habiliter les patients vulnérables à défendre par eux-mêmes leurs droits et intérêts. Lorsque c’est le cas, ils peuvent nuire à l’autodétermination de ces patients et accentuer la position de vulnérabilité dans laquelle ceux-ci se trouvent. Or, le devoir d’advocacy peut et doit être exercé en favorisant l’autodétermination des patients vulnérables, voire le développement des habiletés politiques de ces derniers. Cette communication proposera des moyens pour y parvenir.
4C : Vulnerability and Shared Decision-Making Show Details Grand Salon
Vulnerability and Shared Decision-Making
Caregiver Perspectives of Palliative and End of Life Care for Individuals at End-Stage Dementia in Newfoundland and Labrador: A Qualitative Phenomenological Study
Much research into dementia focuses on caregiver burden, financial costs to health care systems, pathology of and cures for the disease. However, there is a gap in the literature examining the quality of death for individuals at end stage dementia, specifically as it relates to palliative and end of life care (PEOLC). Individuals with dementia present with a unique set of circumstances that make it difficult to assess if the individual is nearing the end of his/her life. Impaired cognition, ineffective communication capabilities and co-morbidities are some issues that impact the ability of providers to determine impending end of life for dementia patients. Current research indicates that indicators of impending death for this population are often misinterpreted as behavioural issues associated with the disease, prompting the development of scales to help identify pain and impending end of life. Research also suggests that this population faces specific barriers to PEOLC, that they receive more invasive and aggressive life sustaining treatment, less comfort care, and are in longer phases of pain and suffering due to non-control of pain. It has been suggested that dementia requires a dementia specific approach to PEOLC, including chronic and terminal palliation. If the PEOLC needs of individuals at end- stage dementia are not being met, the impact of such inadequacy could affect the dignity and quality of life for both the individual and their families. Familial caregivers of deceased individuals who were at end-stage dementia participated in this research. The methodology that was used was selected because the reality of a phenomenon is derived from the fact that it is subjectively experienced. The phenomenological approach is one that focuses on the uniqueness of individual experiences and meanings. This is important to the study of PEOLC among individuals with dementia because a familial caregiver’s subjective experience of PEOLC may differ from what is thought to exist by professional caregivers. Data was collected using in-depth one-on-one interviews in order to capture detailed narratives and experiences. Interviews can generate rich, textured and unique experiences and will be crucial for any potential future research into professional caregiver experiences in that it will allow for a comparison between perceived and experienced delivery of PEOLC services for this particular population. Participants were asked to describe their experiences with PEOLC received by their loved ones. Interviews were recorded and transcribed. Thematic analysis was used to identify common themes. This research highlighted numerous ethical concerns regarding the treatment of people with dementia in general and their access to PEOLC specifically. Resource allocation, principles of justice, non-maleficence and beneficence, and discriminatory health care practices experienced by people at end-stage dementia are just some of the topics that unfolded. This research demonstrates how easy it is for people at end-stage dementia to fall through the cracks with relation to PEOLC; the ethical question is why.
Body as Border Zone: Exploring a more equitable model of shared decision making
In her 2010 book, The Paradox of Hope, Cheryl Mattingly speaks of hospital spaces, waiting rooms, quiet rooms, patient rooms, etc., as border zones. Within these border zones, patients, families and clinicians, each with potentially vastly differing worldviews and values, are thrust together in an attempt to make deeply significant medical decisions. While Mattingly and many other writers have explored the disadvantage that patients and families are placed in by entering an unfamiliar space that belongs to the clinician, this conceptualization does not go far enough to emphasize the nature of the imbalance between patients, their families and clinicians. While it is true that hospital spaces are not neutral, this presentation will argue that the true border zone is the patient’s body, and that a realization of that is the first step towards an improved model for shared decision making. Themes of hope, meaning-making, vulnerability and understanding will be explored in this presentation. We have much to learn societally, from colonial and post-colonial experiences, particularly as they thematically apply to therapeutic encounters within hospitals. If the body is the locus of medical decision making, then in a sense, clinicians have washed up on its shores and have asserted their own norms and language, in an attempt, even if benignly, to order, understand and control what is ultimately foreign. With this conceptualization, the power imbalances that exist between clinicians and patients, take on an invasive tone. Patients are not passively exposed to medical norms and jargon, but have these imposed upon what is otherwise deeply familiar ground: their own bodies. The effect of this imposition can be defensiveness, and certainly confusion. When one looks at vulnerable patients, having their space colonized by unfamiliar norms doubly marginalizes them. This presentation will argue that patient voices routinely fall through the cracks due to our flawed decision making practices. In the context of profound disability, this presentation will show that a tendency to impose medical values and norms only propagates unbalanced decision making, and that true shared decision making must be founded on the reality that clinicians are entering the patient’s space, not the other way around. From this foundation, this presentation will explore how clinicians can engage and reach out to rehab patients as they goal set, and how they can seek to mitigate the stifling effect of vulnerability and marginalization that is bred from a faulty communication model. While much literature is devoted to the importance of exploring patient values, specifically in the context of setting rehab goals, it is important to take a step further and say that clinicians do not need to understand these values in clinical terms in order to respect them. If clinicians realize that they have entered foreign territory in the clinical encounter as a starting point, and respond accordingly by simply establishing a dialogue, there is hope for a fairer shared decision making process.
Unrepresented Patients Experiencing Mental Distress: Unique Challenges for Surrogate Decision Makers
Nada Gligorov; Phoebe Friesen
Unrepresented individuals currently make up 5% of deaths in the ICU, and this number is likely to increase. The bioethics literature concerned with this population focuses primarily on the question of whether physicians, volunteer advocates, or ethics committees should take on the role of primary surrogate decision makers for these patients. We propose an approach for how decisions for a subset of this population, those experiencing persistent psychosis, should be made after the primary surrogates are identified. We consider two established standards of surrogate decision making and demonstrate the unique challenges they pose in relation to unrepresented patients who are experiencing mental distress. The first is the substituted judgement standard, in which decisions are made based on the patient’s previously expressed values and wishes. The second is the best interest standard, which is used in situations where there is insufficient information on which to base a substituted judgement. This standard requires selecting the course of action with the best risks to benefits ratio that takes into account quality of life in line with what a reasonable person would choose. We utilize three cases, presented to our hospital’s ethics committee, to illuminate the unique issues that arise while making decisions for unrepresented individuals with mental illness. All three cases involve patients who either refused treatment or had a history of refusing medical care. The cases demonstrate how it is particularly challenging to apply the substituted judgment standard to unrepresented individuals with persistent psychosis. The substituted judgment standard requires that the preferences and values utilized to make decisions were made by a patient at a time when they had the capacity to make decisions. In many cases, individuals with long-standing, untreated, or treatment resistant mental illness are unable to fulfill this requirement because all of their known preferences were expressed while they were also experiencing psychosis. Medical professionals are then obliged to use the best interest standard, which does not give sufficient weight to the level of psychological discomfort caused by compulsory treatment to an individual who may lack the ability to understand the usual reasons for treatment. We suggest that rather than using substituted judgement or the best interest standard to guide surrogate decisions for unrepresented patients experiencing mental distress, a harm reduction model should be used. The harm reduction approach involves considering the particular aspects of each individual’s case and approaching unrepresented individuals with a long history of psychosis as a unique population. This approach would require that medical professionals minimize harm by taking into account the patient’s preferences, even when unrepresented patients do not fulfill the usual criteria for decision making capacity. We also propose that, in situations where the best interest standard requires the implementation of standard of care, medical professionals take into account the particular harms of forced treatment, and modify the standard of care to avoid undue suffering.
4D : Communicating About Substance Use Show Details Symphonie 4
Communicating About Substance Use
Avec la fumée, sois futé.e!
Maud Guay-Jadah, Véronique Guay, Catherine-Anne Miller and Françoise Filion
Background The use of cannabis has become commonplace among teenagers and young adults. Cannabis use is higher in vulnerable populations, often intersecting with determinants such as lower education, socio-economic instability and mental health issues. It seems that decisions around its use are often misinformed which can lead to increased mental health risks in particular. Responding to this need for health education, a group of university nursing students developed a primary prevention project in partnership with a community organization catering to teens who have dropped out of high school or who are at risk of doing so. The project’s goal was to enhance the teenagers’ mental health and wellbeing by addressing their cannabis use and their coping skills. Methods The framework utilized in this project was the PHPM focusing on education and personal health practices & coping skills as social determinants of health and develop personal skills & creating supportive environment as strategies. Health education concentrated on anxiety and coping skills while a harm reduction approach regarding cannabis use was used to create a supportive environment with the youths in the community organization. The nursing students created two main products: an interactive workshop and an information booklet ranging from basic information on cannabis use to common behaviors to be avoided when using, its effects on anxiety, knowledge on anxiety disorders and alternates to drug use when coping with stress. The workshop named Avec la fumée, sois futé.e! (when smoking, be smart!) lasted over 2 hours, incorporating interactive activities and a discussion. To increase sustainability, an accompanying booklet was distributed at the end of the workshop. Results All the results met the project’s short-term goals: 77% of the teenagers expressed feeling more prepared to make an informed decision related to their common cannabis use while 73% identified at least two behaviors to avoid when using cannabis. In addition, 92% listed two interventions to do in case of an acute intoxication for them or for a friend, 84% correctly recognized signs of distress and 92% of the youth listed at least two non-drug related coping mechanisms to reduce their anxiety. The interactive workshop was very well appreciated by the youths and counsellors portraying a strong partnership with the community organization. Discussion The success of this primary prevention project demonstrated how a strong collaboration with the youths and the community organization permitted to promote educated choices and healthy coping skills while acknowledging the autonomy and personal strengths of the teenagers. As supported by literature, adopting a harm reduction approach for cannabis use, rather than promoting abstinence, encouraged inclusivity and respect for the teenagers. This positive outcome leads to believe that such an intervention could be repeated with different vulnerable youth groups by tailoring the activities and interventions to their needs.
What we say matters: Learning from stakeholders about how we should communicate information concerning fetal alcohol spectrum disorder
John Aspler, Aline Bogossian, and Eric Racine
Objective: To understand the views of key stakeholders on Canadian media discourse about FASD. In this talk, we reflect on focus group data from a study that was fueled by the results of a media analysis we previously conducted on the topic of FASD. We connect our preliminary results to ways we can improve communication about FASD in different public sectors (e.g., education, healthcare). Importantly, limited research has explored the lived experiences, beliefs, and constructed meanings of Canadians with FASD and other key FASD stakeholders. Our study aimed to fill this gap. Background: Fetal alcohol spectrum disorder (FASD), a complex diagnosis for a wide range of neuro-developmental disabilities, results from prenatal alcohol exposure. It presents heterogeneously, with a mixture of characteristic facial features (e.g., thin upper lip), and disabilities in executive function (e.g., impulse control, hyperactivity), cognition (e.g., low IQ, learning differences), and other brain domains (e.g., motor function, language, mood regulation). While Canadians know that FASD exists, and that drinking alcohol when pregnant can harm a fetus, they are less informed about what FASD actually entails. Given this gap in knowledge, the media, a common source of information thought to impact and reflect public attitudes, could play a key role in shaping the way the public understands FASD. In addition, given the media’s history of poorly portraying people with disabilities, it could be one factor in the generation of stigma towards vulnerable groups such as people with FASD and women who drink while pregnant. In the latter case, stigma could result in connection with the fact that prenatal alcohol exposure is a necessary factor in the development of an FASD. People in these groups may have complex and intersecting vulnerabilities. Methods: We are conducting semi-structured focus group interviews with four key stakeholder groups: 1) adults with FASD; 2) parents of people with FASD (e.g., adoptive, biological); 3) healthcare professionals who have experience with people affected by FASD and their families; and 4) health and science communicators (e.g., journalists, advertisers). These stakeholders can provide key insights into living with the diagnosis, caring for people with the diagnosis, the stigma associated with drinking while pregnant, and translating information from medical and disability communities to the public. We aim to conduct 2-4, two-hour-long, audio-recorded, interviews per stakeholder group. The interviews focus on: 1) stigma and labelling (e.g., how physicians feel about providing diagnoses, how people with FASD feel the label impacts them, how pregnant women experience blame); and 2) reflections on specific media quotes and examples we provide during the interview. We will analyze the data using ‘framework analysis’, a method involving the creation of a list of themes (a ‘framework’) organised into categories developed by Ritchie and Spencer (1994). This method orients toward policy development, and allows for the understanding of diverse perspectives across groups. These results enable us to make recommendations to improve communication of information about FASD, in clinical contexts, public health messaging, and in public discourse.
Maternal Prenatal drug use and neonatal abstinence syndrome; A parable of vulnerability and intolerance.
Paul Byrne, Karen Foss, Denise Clarke, Kathy Cardinal, Stephanie Haire.
Maternal prenatal substance use is common both as prescribed medication and non - prescription ' street ' drugs. The majority of these mothers have a long history of substance use and continue to take opioids and other substances during pregnancy. The traditional approach in perinatal care to these mothers is fragmented and haphazard. The involvement of various specialities including obstetrics, substance abuse programs, mental health services and finally neonatology is associated with communication problems and poor coordination of care. Misunderstandings relating to the norms of this population result in frequent value judgments by caregivers about the mothers, their perceived ' compliance ' with prenatal care requirements, and their exposure of their foetus and neonate to drugs. The care approach at the time of birth frequently involves a deliberate focus on the neonate for signs of neonatal abstinence syndrome ( NAS ) and a mindset to admit the baby to NICU for pharmacotheray. A focus on the mother's ongoing drug needs after birth are usually ignored completely. In addition the care of the neonate often involves inclusion of family and children's services with a significant legal apprehension rate. In 2015 - 2016 we piloted a clinical intervention at the Grey Nuns Hospital ( GNH ) in Edmonton AB where we identified mothers in a methadone program. The mothers were offered an opportunity to give birth at the GNH and remain in hospital for 7 - 10 days after birth as the primary caregiver for the baby. The focus of care was non pharmaceutical involving breast feeding , skin - to - skin care , and a care by family in a specially equipped room on the post - partum ward. There were many educational discussions undertaken with staff before the intervention in order to overcome biases about this population of mothers and the care required by the neonates. Negative value judgments about the care of the mothers in labour, their needs after birth with respect to ongoing drug use , and their ability to provide care for their infants are common for this population.To date we have successfully provided care for 20 pregnant women and their infants with only one infant being admitted to NICU. The dramatic change in clinical practice has been associated with an improved attitudes of the caregivers to this vulnerable and often marginalized population. Our presentation will focus on how ' low tech ' innovative clinical approaches grounded in education about tolerance and stigma can dramatically improve the lives of vulnerable populations.
4E : Cluster Trials and Empirical Bioethics Show Details Symphonie 3B
Cluster Trials and Empirical Bioethics
QUALITY CONCERNS & PROBLEMS WITH SUPPORT FOR BIOETHICS RESEARCH
It is a commonplace to hold that bioethics research has become increasingly competitive with increased application pressures for grants, decreased funders and funds available. One would expect that this 'narrowing of the gate' would mean that only higher quality work would get supported. Nevertheless, though difficult to prove, it seems that inconsistency of quality, if anything, is increasing. Bioethics journals relevant for publishing research are increasing, while loyal readership seems more difficult to secure. One reason might be consumer disappointment: Who wants to stick with a journal if you cannot trust the quality of its articles? Conferences too are proliferating, but again membership attrition may be explained (in part) by consumer disappointment: Who wants to stick with a conference as leading experts (known for their high quality work) seem harder to pull in and the quality of plenary talks is 'hit-and-miss'? Cynics cite slippage in review standards and their execution. They may go further, blaming not just reviewers—the experts who should know better—but also expert and non-expert readers and conference attendees for tolerating, or even worse, proving satisfied with the results of increasingly lower standards. While this may be true, I contend that there is likely more than failure of expectations to explain this conundrum. This presentation hypothesizes that the inconsistency of quality germane to bioethics research outputs can be illuminated by applying George Akerlof's economic theory of the market for lemons (slang for used cars with the appearance of consistent quality but are found to be defective after being bought). Following Akerlof, I argue that bioethics research consumers may unintentionally 'buy' (accept and support) lemons because of an information asymmetry. As lemon producers and sellers, the relevant researchers have knowledge about the quality of their work that is not credibly communicated to consumers. Under conditions of not knowing what quality to expect, consumers adjust their support for any bioethics research output (of high or low quality) proportionate to what they consider that an average quality bioethics journal publication or plenary talk to be worth (based on previewed, observable characteristics). This information asymmetry encourages the 'sale' of lemons: bioethics researchers who produce and sell lower quality work get proportionately more (acceptance and support) than it's worth; those who produce and sell higher quality work get proportionately less (acceptance and support) than it's worth. This makes for an increase of lemons and a decrease of higher quality products on the bioethics research market. As the average quality of bioethics research outputs drops, so does the support, making it increasingly difficult for researchers of higher quality work to get support substantial enough to make it worthwhile. Pace the cynics, although some potential bioethics researchers would be willing to produce and sell their higher-quality products at the price that some potential consumers would be willing to pay, under conditions of information asymmetry, it is difficult for these parties to connect. Accordingly, exchanges in bioethics research that could benefit both consumers interested in, and researchers of, higher-quality work fail to take place.
Ethical issues in individual-cluster trials: beyond the Ottawa Statement
Cory E. Goldstein, Austin R. Horn, Monica Taljaard, Charles Weijer
The conduct of pragmatic randomized controlled trials is increasing due to their societal importance and their role within the Patient-Centered Outcomes Research Institute (PCORI) initiative "to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make informed health decisions." Cluster randomized trials (CRTs), in which groups rather than individuals are randomized to intervention and control conditions, naturally tend to be more pragmatic. CRTs may be categorized as "individual-cluster trials" where the intervention is delivered directly to individuals, or "cluster-cluster trials" where interventions are not divisible at the individual-level. The Ottawa Statement is the first comprehensive ethical guidance document specific to CRTs. Whereas the Ottawa Statement generally presumes that informed consent will be sought for individual-cluster trials, such trials--when used to evaluate usual care interventions--raise particular ethical issues that require further analysis and guidance. This paper has three objectives: to (1) describe current practices and reporting of ethical issues in published individual-cluster trials; (2) present an in-depth ethical analysis of an individual-cluster trial randomizing dialysis centres to two different usual care interventions; and (3) identify ethical issues that require further analysis and guidance. Objective (1) Systematic review of individual-cluster trials: Using an electronic search strategy, we identified a random sample of published individual-cluster trials in Canada, the USA, UK, France, Australia and Low and Middle Income Countries. Two reviewers independently extracted details about ethical issues and practices (e.g., justification for the cluster randomized design, prevalence of seeking informed consent, presence and roles of gatekeepers). Practices will be compared over time, between countries, types of clusters and interventions, and other descriptors. Objective (2) An ethical analysis of the TiME trial: The optimal duration for individual hemodialysis treatments in chronic renal failure is currently unknown. The Time to Reduce Mortality in End-Stage Renal Disease (TiME) trial is a PCORI funded individual-CRT in which dialysis treatment centres are randomized to one of two hemodialysis durations (usual care or extended) to evaluate their comparative effectiveness. The main outcome measures are mortality, hospitalization, and quality of life. The trial uses an IRB approved "opt out" approach to informed consent. Applying the Ottawa Statement highlights a range of issues, including justification for the study design, participant identification, informed consent, gatekeeper permission, benefit-harm analysis and protection of vulnerable participants. Objective (3) Ethical issues that require further analysis and guidance: While the Ottawa Statement provides a systematic approach to the ethical analysis of CRTs, we conclude that further analysis and guidance is required for individual-cluster trials of treatments adopted as policy at cluster-level. The TiME trial highlights a number of generalizable ethical issues, including (1) whether there is an appropriate justification for the cluster randomized design (e.g., what justifies adoption of cluster randomization if individual randomization is feasible in principle?), (2) the appropriateness of the consent procedure (e.g., can consent be waived due to pragmatic challenges?), and (3) how we should understand gatekeeper permission (e.g., is gatekeeper permission identical to obtaining proxy consent?).
4F : Respect, Resiliency and Vulnerability Show Details Symphonie 2
Respect, Resiliency and Vulnerability
Stick it to Stigma: Using Cognitive-Based Therapy to Inspire Resiliency in Patients with Depressive Mental Illnesses
While all persons share common vulnerabilities that exist solely in virtue of being human, particular individuals are also subject to additional liabilities that overlay the ontological. These individuals are segregated into minority groups that are often stigmatized against, as they fall outside the scope of what is considered as ‘normal’ dependency. An important and often neglected group is that comprised of persons who suffer from mental illness. Societal stigmatization persists as a serious barrier for individuals who are marginalized, particularly when it comes to obtaining effective medical treatment. The effects of stigma in relation to vulnerability are detrimental, as dependency induces increased vulnerability, which in turn, leads to greater dependency. This essay will examine the impact that stigma holds over those who suffer from depressive mental illnesses, focusing on the effects it has on one’s identity and autonomy. Through analysis of relational accounts of the self, vulnerability, and self-trust, it will be displayed that the negative effects associated with stigmatization significantly deepen the need for increased availability of cognitive talk therapy for sufferers of depressive mental illness.
Using an On-line Moral Conflict and Resilience Tool to Move from Moral Distress to Moral Action in Intensive Care Units
Peter Dodek, Miriam Stewart, Lynn Alden, Najib Ayas, Jacques Chevalier, Deborah Cook, Ann Hamric, Jean Kozak, Lee Ann Martin, Carol Pavlish, Steven Reynolds, Patricia Rodney, Richard Sawatzky, Una St Ledger, Rosalie Starzomski, Rachel Thibeault
A growing body of empirical research points to high levels of frustration, anxiety, anger, self-doubt, and guilt that health care providers experience when they feel powerless to practice according to their ethical standards. These emotions reflect moral distress which develops when professionals believe they know what is the right thing to do but feel powerless to act because of internal or external constraints. This problem has reached alarming prevalence in Intensive Care Units (ICUs), particularly in nurses. Threats to moral integrity in ICUs are usually driven by end-of-life controversies, inconsistent care plans, and pressure to reduce costs. Consequences range from diminished workplace satisfaction to absenteeism, burnout, attrition, workplace incivility, and ethical numbness over time. There is almost no empirical evidence about how to prevent or treat moral distress. Led by an international multi-disciplinary team of clinicians and researchers from the clinical and social sciences, and funded by the Canadian Institutes of Health Research, this project builds on existing studies of moral distress and participatory action research to address this issue at both individual and organizational levels. To meet our goal, we will apply the moral conflict and resilience assessment (MCR) and intervention process developed by Drs. Chevalier and Thibeault, Providence Health Care Research Institute, and the Centre for Practitioner Renewal at Providence Health Care. The MCR process is innovative in that it guides participants in unpacking moral conflict from other concerns that often coalesce in real-life settings, including perceived gains or losses in ‘self-interest’ and ‘self-realization’, an issue overlooked by many other approaches. The steps of this on-line and confidential process include description of the constraining behaviour, effects of the behaviour on the participant, current response of the participant, moral values involved, factors that help and hinder, and planning and validating a new response. We will test this novel approach to translating knowledge into action by engaging health care providers and knowledge-users from two tertiary and two community ICUs (estimated 400 ICU administrators, physicians, nurses, respiratory therapists, and other health care professionals) in applying the MCR process to better understand and overcome moral distress situations. MCR discussions will be held by five existing ‘action-learning services’ within each hospital that are already mandated to address this kind of problem: 1) ethics education, 2) ethics consultations, 3) clinical supervision, 4) unit-based ethics conversations, and 5) ethical policy development. Structured discussions will take place at the beginning, half-way into, and at the end of the project, over two years. The effect of the MCR process on moral distress will be monitored and evaluated in each ICU using a highly innovative, interactive web-based methodology for collaborative data entry and analysis by each participant; aggregate data will be available for broader use and dissemination after project completion. The MCR and measurement processes will also be evaluated using focus groups at each hospital site. This project is thus intended to be educative and empowering for all parties, reflecting a dynamic approach in which problem identification, planning, action, and evaluation are closely interlinked.
Overdose Education and Naloxone Distribution Programs: Unintentionally Entrenching Stigma and Inequities?
Daniel Z Buchman, Aaron Orkin
Overdoses from drugs such as oxycodone, fentanyl, hydromorphone, and heroin are now a leading cause of accidental death across Canada. Overdose education and naloxone distribution (OEND) programs emerged as a pragmatic option for structurally vulnerable groups such as people who use drugs. Such programs provide an option for groups who cannot or will not access mainstream emergency medical services in the event of an overdose. Naloxone is an opioid antagonist that reverses the effects of opioid withdrawal, including sedation, respiratory suppression, and also analgesia. With over OEND 200 programs reported worldwide and policy statements supporting OEND from agencies including the World Health Organization, US Centers for Disease Control, American Heart Association and Public Health Agency of Canada, OEND is now part of mainstream public health and emergency efforts to overturn the epidemic of opioid-related deaths. The stigmatized and criminalized nature of injection drug use makes programs like OEND necessary. For instance, stigma is relevant in multiple domains often associated with injection drug use. This includes the identity of drug addiction, street involvement, history of mental illness, and poverty. There is increasing evidence that stigma is a barrier in users calling emergency medical services or seeking medical attention after an overdose out of fear of legal repercussions. The stigmatization of those already multiply disadvantaged intensifies inequalities and can have a destructive impact on the health of populations. Stigma is often a source of chronic physiological stress and it can be an additional burden that people who use drugs experience. Task-shifting programs like OEND rely on the lived expertise of people who use drugs to successfully deliver a lifesaving healthcare intervention. This decentralizing of power and expertise is in tension with conventional healthcare service delivery structures where the formal healthcare system and its professional practitioners bear the responsibility for delivering high quality, accessible clinical care. For OEND programs, this includes bridging the gap between structurally vulnerable groups and the mainstream healthcare system, including emergency care. However, if such goals are not achieved, OEND programs may also risk entrenching the inequities and stigma experienced by people who use drugs. OEND may also intensify the power imbalances between those engaged in task-shifting, such as peer workers, and providers who work in the formal healthcare system. We demonstrate that some OEND program evaluations and reports already provide empirical evidence of this ethically worrisome outcome. In this presentation, we consider whether some public health interventions may inadvertently further marginalize already structurally vulnerable populations. We argue that, from a social justice perspective, public health practitioners must engage with the ethical issues inherent in programs such as OEND. Attention to the ethical issues is critical because the burdens of public health programs largely fall on disadvantaged populations. OEND must demonstrate the ability to reduce opioid-related deaths without unintentionally disadvantaging the disadvantaged. Task-shifting interventions such as OEND may create unintended ethical complexities when they entrench inequities among the very populations they were designed to support.
|3:00 pm - 4:00 pm|
Pediatric Keynote: If not now, when? Seeking health and justice for Inuit children and youth Show Details Grand Salon
Associate Professor of Paediatrics, University of Ottawa, Consultant Bioethicist, Children's Hospital of Eastern Ontario (CHEO)
Pediatric Keynote: If not now, when? Seeking health and justice for Inuit children and youth
Medical foster care has emerged as the ‘answer’ to systemic deficits in the health care, economic, social and infrastructure in the far north. This session describes socio-historical challenges to providing health care to children from the far north and the evolution of medical foster care in the south as a way to provide care for the most seriously ill and medically complex patients. Yet this care, no matter how well-intentioned, is inevitably and deeply problematic. An ethics analysis includes narrative, feminist, social justice and public health approaches and posits steps urgently needed to advance health and justice for Inuit children and youth.
** Photo used with kind permission of www.michaelhdavies.com
Associate Professor of Paediatrics, University of Ottawa,
Consultant Bioethicist, Children's Hospital of Eastern Ontario (CHEO)
Michelle Mullen is an associate professor of paediatrics at the University of Ottawa, consultant bioethicist at the Children's Hospital of Eastern Ontario and ethicist for the Faculty of Medicine. She is a former Associate Director of Women’s Studies and Director of the Collaborative Master’s Programme in Women’s Studies at the University of Ottawa. She received her Ph.D from the Joint Centre for Bioethics and a BSc (Hons) from the University of Toronto. She holds a Master's in Health Policy from the University of New South Wales in Sydney Australia.
Michelle has published over a wide range of bioethics, health and policy issues. She is currently a team member in the provision of health services to the children and youth of Nunavut through CHEO and has a particular passion about the complex issues of children in medical foster care.
|4:00 pm - 4:30 pm|
Afternoon Networking, Poster Viewing and Refreshment Break Grand Salon Foyer
Afternoon Networking, Poster Viewing and Refreshment Break
|4:30 pm - 5:30 pm|
5A : Uncommon Bedfellows: New Insights into the complex relationship between Palliative Care and Medical Assistance in Dying Show Details Symphonie 2
Uncommon Bedfellows: New Insights into the complex relationship between Palliative Care and Medical Assistance in Dying
Anne Woods, Caitlin O'Donnell, Joseph Pellizzari, Joshua Shadd, Marilyn Swinton, Kathleen Willison
The World Health Organization asserts that Palliative Care “intends to neither hasten nor postpone death.” Many Palliative Care physicians adhere to this as their philosophy of practice. The 2015 Supreme Court ruling (Carter v. Canada) and Bill C-14 decriminalized medical assistance in dying (M.A.I.D.) allowing physicians to hasten death for patients who have “a grievous and irremediable medical condition”. We conducted semi-structured, qualitative interviews with 43 of 48 physicians recognized as Palliative Care experts in our region to understand the anticipated effect of the new M.A.I.D. legislation on these physicians and their practice. The interviews were carried out in April and May of 2016, prior to the legislation coming into effect. The average length of interview was one hour, although interviews ranged from 25 minutes to 3 hours. Interviews were digitally recorded, transcribed and anonymized. Transcripts were analyzed using conventional content analysis. There are three reasons why we believe this study matters. First, there is little research on the impact of M.A.I.D. on physicians. Second, palliative care physicians care for a vulnerable population who are suffering. We wanted to understand how the new legislation might affect their relationships and care. Third, this is a new landscape (medically, legally, and culturally) for Canada, its physicians, and its citizens. While legislation exists in other countries, it may play out differently in the Canadian context. Our presentation will focus on the varied, complex, and nuanced perspectives of palliative care physicians: 1) how these palliative care physicians understand the legislation 2) their concerns and questions regarding M.A.I.D. 3) their perceived implications for individual medical practice, for the discipline of palliative care, and for society as a whole; 4) the anticipated impact on their ability to care for patients at the end of life and 5) their support needs. We will ask the audience to consider the relationship of palliative care to medical assistance in dying and to enter into dialogue with us about how we can support physicians who address the suffering of others, who are involved in the care of the dying, and who are involved in requests for MA.I.D. It is our belief that no physician, or patient, should be overlooked or fall through the cracks.
5B : MAID, Suffering and Capacity: a qualitative study of healthcare provider perspectives Show Details Symphonie 4
MAID, Suffering and Capacity: a qualitative study of healthcare provider perspectives
Alison Thompson, Michelle DiRisio
How clinicians understand suffering has significant implications for what they do about it, and how they think it influences end-of-life decision-making. Building on a pilot study for the Law Commission of Ontario (1) , this paper presents the findings from a qualitative study of health care professionals who were asked to reflect on how suffering might be related to a patient’s capacity to make decisions at the end of life. While the literature has many studies on suffering and also on capacity, very little research has been conducted on the impact of suffering on capacity. This is timely because of the recent Carter v. Canada Supreme Court of Canada Decision and because medical assistance in dying (MAID) is now legally allowed under the revised circumstances identified in the Canadian Criminal Code. In this study, 18 healthcare providers from Ontario were interviewed who work in the following clinical areas: Critical Care, Palliative Care, Family Medicine, and Medical Oncology. Theoretical sampling and iterative thematic analysis was employed, with a theoretical framework that drew from the work of Arthur Frank, Jennifer Nedelsky, Arthur Kleinman and Eric Cassel. Provider perspectives on the nature of suffering, what makes suffering intolerable, and whether it clouds or constitutes judgement are explored. The inadequacies of a cognitive model of capacity, such as the one in Ontario enshrined in the Health Care Consent and Capacity Act were highlighted by providers. Relatedly, many also felt that there was an overburdening of patient autonomy at the end of life, suggesting that a notion of relational autonomy ought to replace the more familiar, atomistic notion that cannot accommodate other values, such as family harmony. It was also clear that patients are not the only ones who are experiencing suffering: many participants described their own suffering related to caring for patients at the end of life, and that of the families who become part of the circle of care. The implications of these findings for MAID are discussed. --- (1) This study was partially funded by the Law Commission of Ontario under their “Improving the Last Stages of Life” project. The report that resulted from the preliminary phase is: Cartagena, R., Thompson, A.K., Katebian, K., Lemmens, T., Geist, R., Schipper, H., Handelman, M., & Buchman, S. “Understanding the Relationship between Suffering and Capacity at the End-of-Life: A Pilot Study.” Research Paper Commissioned by the Law Commission of Ontario July 2016
5C : Mental illness, suicide & ICU care: Cracking the complex ethics of prior wishes, proxy consent and vulnerability to implicit bias Show Details Grand Salon
Mental illness, suicide & ICU care: Cracking the complex ethics of prior wishes, proxy consent and vulnerability to implicit bias
Karen E. Faith and Kevin Reel
The duties of a substitute decision maker (SDM) are strategically important – ensuring that the previously expressed wishes, values, experiences and beliefs of a now incapable person are understood and considered in decisions about treatment. They carry the weighty task of representing another person when consent to or refusal of treatment is required on that individual’s behalf. Under any circumstances this can be a vexing task. However, where the now incapable person has a history of serious mental illness and the critical injury or illness is the result of an incomplete suicide, the emotional and moral complexity multiplies. The SDM and care team can be confronted with a crucial decision about care that necessarily involves considerations including: the person’s mental state at that time these wishes were shared; whether these were a true reflection of her/his personal values and beliefs or if they were a function of the effects of mental illness; if so, to what degree; the prospect of ‘completing’ the suicide; abandoning hope of further recovery; and perpetuating a false dichotomy between mental and physical illness by marginalizing psychological suffering. This confounding combination of conflicting ethical concerns includes equity, complicity, vulnerability, autonomy and implicit bias. The task of contemplating goals of care and the choice of treatment options unfolds within a broader social context, where those living with serious mental illness can be subject to implicit biases that can persist in health care settings. To assist such deliberations, we concur with others who hold that a highly nuanced ethical approach is needed. We also consider the need to embrace the concept of palliative psychiatry as an option for those few individuals whose conditions appear to be irremediable and manifest life threatening potential. An illustrative scenario will be shared which highlights challenges faced by a patient’s care team, her chosen SDM and her parent in reaching a common understanding of how her wishes, values, beliefs and experiences should inform consent to or refusal of life sustaining measures following an incomplete suicide. Central to this discussion will be the tensions that exist between what Battin identifies as “autonomy and mercy” as well as how implicit bias towards people with serious mental illness influences the interpretation of vulnerability and its manifestation in health care settings. Drawing from the presenters own consultative experiences and highlighting key arguments found in the current literature it is hoped that this presentation will engage attendees in a discussion about the role of bioethics consultation in addressing mental illness, suicidality, the impact of social bias and vulnerability.
5D : Getting Patients Out of the Cracks: Case Studies from an Ombudsman's Office Show Details Symphonie 3A
Getting Patients Out of the Cracks: Case Studies from an Ombudsman's Office
Lynne Casgrain, Marjolaine Frenette, Stéphanie Urbain, Michael Bury
As our health care system becomes more complex and more pressure is added at all levels, patients are expected to take ownership and responsibility over their health. Not surprisingly, this difficult context poses a real challenge for some of them. From the youngest to the oldest, from mental health needs to surgical needs, all face the risk of falling down if any of the layers of access and coordination of care fail. While the Ombudsman’s main mandate in Quebec is to receive and examine complaints, a major part of our time is spent in assisting patients, caregivers and families in their journey through clinic and emergency room visits, examinations and hospitalization. Located in a tertiary care center in the heart of a metropolitan city, we assist more than 2000 people each year in finding their way through, communicating effectively, accessing care and obtaining care. Four compelling case studies will be presented to demonstrate the variety and complexity of situations experienced by patients. In this interactive presentation, each case will be analyzed through legal, ethical and administrative frameworks. At the end of the presentation, reflective questions will be asked to the audience to trigger discussion. Our robust, yet fragile healthcare system often becomes the obstacle that prevents patients and families from accessing healthcare services. How can we pull them out of the cracks effectively, and prevent more patients from falling through?
5E : Filling in the gaps within the current landscape of research ethics: An integrative and functional account of vulnerability Show Details Symphonie 1
Filling in the gaps within the current landscape of research ethics: An integrative and functional account of vulnerability
Dearbhail Bracken-Roche and Eric Racine
Since its first explicit use in the Belmont Report of 1979, the concept of vulnerability has been widely employed in research ethics to signal attention to persons who require special consideration and protection in research. However, this concept has come under fire for being vague and under-theorized. There is growing concern that the dominant approach to vulnerability (as exemplified by research ethics regulations and guidelines) is ethically problematic, perpetuating stereotypes about and stigmatizing research populations including pregnant women, persons with disability, and persons with mental illness. In addition, a more practical concern is that the dominant approach provides limited real-world guidance for identifying and responding to intersecting vulnerabilities, leaving researchers and research ethics boards (REBs) uncertain about how to address issues of vulnerability in research. A largely agreed-upon strategy for addressing these issues is to move from categorical (focused on delineating vulnerable groups) towards analytical (focused on analyzing types and sources of vulnerability) approaches. Analytical approaches to vulnerability can facilitate clearer identification of the ethical issues often encompassed by the umbrella concept of vulnerability and, thus, more targeted strategies for their remediation. Beyond this agreement, however, scholars have been advancing competing conceptions of vulnerability without consensus about its appropriate operationalization in research ethics practice. We undertook a critical interpretive review (see McDougall, 2015) of the literature on vulnerability in research ethics, with the aim of proposing an account of the concepts enriched by key insights from the literature. In this session, we will present the results of this work: a ‘functional’ (i.e., practically applicable) and ‘integrative’ (i.e., addressing the four key components of a full account of vulnerability) account of vulnerability. We will propose that a comprehensive account of vulnerability for research ethics must address its definition, normative justifications, application, and implications. We will critique some of the major proposals for re-envisioning the concept of vulnerability in research ethics, including Luna’s ‘layered’ approach (Luna, 2009) and Hurst’s definition of vulnerability as increased risk of harm or wrong (Hurst, 2008). Concluding that no existing accounts integrate these components in a functional manner, we will present our own integrative and functional account of vulnerability. Using an example of research on deep brain stimulation for treatment-resistant depression, we illustrate how the integrative-functional account can generate targeted responses to vulnerability in research. Finally, we will show how this account is inspired by, and well-suited to application within, a pragmatist, evidence-based approach to research ethics. While ultimately there are concerns to be addressed within existing research ethics guidelines on vulnerability, the integrative-functional account can serve as an analytic tool to help researchers, REBs, and other relevant actors fill in the gaps within the current landscape of research ethics governance. As such, we aim to engage audience members in questions about both theory and practice surrounding the notion of vulnerability in research.
5F : Standing at the Interface of Arts and Bioethics: How to Bridge the Gap Between Researchers and Knowledge Users' Communities? Show Details Symphonie 3B
Standing at the Interface of Arts and Bioethics: How to Bridge the Gap Between Researchers and Knowledge Users' Communities?
Vincent Couture, Marianne Cloutier, Victoria Doudenkova, Jean-Christophe Bélisle-Pipon
How can bioethics engage the public on important ethical issues? It is arduous to include the general public, and frequently a gap remains between knowledge production and its appropriation by knowledge user communities. While there is an increasing imperative for researchers to conduct efficient and relevant knowledge transfer, existing guidelines are not always sufficiently developed for researchers to bridge this gap. For this task, bioethics may rely on its sensitive side, i.e. that ethical issues stimulate emotional responses and affect our values. By using a different language, the arts may also convey a message, stimulate a feeling or raise awareness about a certain reality, whether this be distress, vulnerability, and uncertainty of technological innovation. Since scholarly writing has limitations in transmitting the underlying tensions of ethical dilemmas, the artistic experience can provide an alternative approach to the dissemination and media coverage of bioethical issues to different publics. Would it not, then, be worthwhile to explore this sensitive realm as a possible space to establish a connection between arts and bioethics? Specifically, could it be an avenue for bioethics to engage the public, as well as to allow new means for bioethics to reflect on its own practices, methods, and social contribution? These reflections are not new, as in recent decades we have seen attempts to blur the boundaries between arts and bioethics, leading to new forms of studies in bioethics. The best known are narrative ethics, the personal turn in bioethics, visual bioethics and art-based health research. Conversely, bio-art and sci-art have brought ethical discourse into art practices. These approaches follow the idea that aesthetics and ethics are two major discourses allowing us to understand the contemporary era, and that their combination enable mutual benefits. Research at the intersection of both discourses is gaining recognition; artistic contributions were parts of the International Association of Bioethics World Congresses of Bioethics in 2008 (Croatia) and 2010 (Singapore), and their integration culminated as a major theme at the 2016 edition in Edinburgh. To push further this intertwining of arts and bioethics, we argue that it is necessary to dissolve barriers between arts and academic bioethics to create hybridized forms of dissemination, education and experimentation. We hypothesize that the expression of bioethics through arts can be an innovative and efficient way to transmit the sensitive aspect of ethical issues of health and well-being, and helps bridge the gap between academic research and lived experiences. To test our hypothesis, we developed the Art+Bioéthique project, involving six duos composed of one young scholar in bioethics and one emerging artist, aiming at co-creating artworks and bioethical essays. The project relied on an experimental platform of exchange with the community, that sought to explore what the equation A+B=? would give. The aim of the project was threefold: 1) to identify and characterize the mechanisms needed for a fruitful meeting of arts and bioethics; 2) to experiment and co-construct a dialogue between arts and bioethics; and 3) to stimulate a public discussion on bioethical issues.
|5:30 pm - 8:00 pm|
Evening Social: Montreal Museum of Contemporary Art Show Details
Evening Social: Montreal Museum of Contemporary Art
Please join us on Thursday May 25 from 5 - 8 pm for an evening of fun and culture at the Montreal Museum of Contemporary Art
Attendance is FREE with registration and includes all of the following:
Wine, beer and beverages provided | Presentation of the Lifetime Distinguished Service Award
We hope to see you there!
Extra tickets ($25 each) are available on the registration page, OR to add extra tickets to your current registration, contact Chris.
Friday May 26th 2017
|7:30 am - 8:30 am|
Breakfast & Poster Viewing Grand Salon Foyer
Breakfast & Poster Viewing
|8:30 am - 10:00 am|
6A : Ethics of Reproduction and Pregnancy Show Details Grand Salon
Ethics of Reproduction and Pregnancy
Non-invasive prenatal testing (NIPT): The results of a Delphi study about social acceptability in Canada
Charles Dupras, Stanislav Birko, Aliya Affdal, Vardit Ravitsky
Non-Invasive Prenatal Testing (NIPT) is a recent technology allowing genetic testing for Down Syndrome and other aneuploidies in fetal DNA through a maternal blood test early during pregnancy (weeks 8-10). NIPT has the potential to revolutionize prenatal testing, because it eliminates the risk of miscarriage associated with current invasive procedures such as amniocentesis (1/200-600) and chorionic villus sampling (1/100). The introduction of NIPT in Canada however raises a number of ethical and social concerns. NIPT is, for instance, expected to increase rates of prenatal testing and the number of pregnancy terminations. The cumulative result may be decreased prevalence in the population of individuals with tested conditions, leading potentially to increased discrimination against affected individuals and their families, and even to eugenic social attitudes. This may then result in decreased medical and social support for families with affected children, and marginalization of research efforts to cure or alleviate conditions that are seen as addressed by being ‘screened out’. Yet, if these concerns materialize, the social acceptability of NIPT may be challenged leading to a generalized resistance to the technology. For example, the introduction of NIPT in a few European countries, which was initially met with enthusiasm, triggered a strong backlash when public funding for it was proposed. The organization ‘Down Syndrome International’ attempted to convince the European Court of Human Rights that the test should not be reimbursed on the grounds that since most pregnancies diagnosed with Down syndrome are terminated, this test violates the right to life of individuals with Down syndrome. Empirical studies are thus required to better understand (the prerequisites of) social acceptability for the implementation of NIPT in Canada. In this presentation, we will share the results of an important Canadian Delphi study that we have been conducting on this matter. The Delphi survey method has been developed in the 1950s to assess the issues and concerns - and glimpse a practical solution – to the emerging nuclear threat. The Delphi method is an iterative process in 3 rounds allowing to collect anonymously both quantitative and qualitative data through surveys. Between each round, investigators collect, process, and return results to participants (controlled feedback). This methodology aims at identifying consensus among experts from different backgrounds, in order to identify the best decision for dealing with the problem or risk to be encountered in the future. In our study, the Delphi method is being used to survey a panel of experts from a variety of relevant fields about the social acceptability of NIPT. While studies on prenatal testing often focus exclusively on patients and clinicians, our goal was to hear from a wide range of experts, including of course healthcare professionals (e.g. genetic counselors, obstetricians, midwives, pediatricians), but also disability rights advocates, researchers (in social sciences and humanities), and representatives of the most prevalent cultural/religious communities in Canada. As will be presented, our results make explicit the large diversity of opinions about the social acceptability of NIPT, but also indicate where areas of consensus may emerge.
Two men and a surrogate: A retrospective exploration of the relationship between gay fathers and gestational surrogates in Canada
Background: Advances in reproductive technologies and the progress of equal rights for sexual minorities have led to new family planning options for gay men in Canada. In particular, a growing number of gay men are electing to father biologically and genetically related (biogenetic) children through the practice of surrogacy. For gay fathers, negotiating the surrogacy relationship may be difficult; appreciation and gratitude toward their surrogate is felt amid a desire for separation and detachment. The purpose of this study was to retrospectively explore the relationship between gay fathers and gestational surrogates in Canada at three time points: (1) pre-pregnancy; (2) during pregnancy; and (3) post-birth. As surrogacy creates new possibilities for gay men to pursue biogenetic parenthood, research is critical to inform practice and policy of pursuing third-party reproduction in Canada. Methods: From January 2015 to January 2016, gay fathers (n=17) and gestational surrogates (n= 6) were recruited through advertisements distributed across same-sex parenting groups, online registered surrogacy agencies and social media. Using non-probability purposive sampling and snowball recruitment strategies, three populations were targeted: (1) single or partnered gay fathers who practiced gestational surrogacy; (2) gestational surrogates who bore a child for gay men; and (3) gay fathers and their paired surrogate. All participants had to be living in Canada at the time surrogacy was practiced. In-depth semi-structured interviews (~60-90 min) were conducted either in-person or over the phone; informed consent was reviewed and obtained prior to the interview. Textual analysis was conducted by the researcher. Initial line-by-line coding was first completed, meaningful quotations/statements were pulled from transcripts, and emerging patterns and themes were organized from the data manually to generate research findings. Triangulation, member-checking and peer-debriefing supported validity. Results: Findings from the present study draw attention to the emerging complexities of surrogacy relationships (1) pre-pregnancy, (2) during pregnancy, and (3) post-birth. Each time point considers participant perceptions of the relationship, frequency of contact and intended fathers' involvement with their surrogate. Interpersonal trust is a necessary addition to establish a positive surrogacy relationship. Surrogates trusted that a mutual relationship with gay fathers would ease concerns of exploitation and abandonment post-birth; comparatively, gay fathers relied on surrogates to assume a healthy pregnancy and relinquish the child. Gay fathers benefited from a surrogate's ability to communicate her own interests and needs, whilst she encouraged gay fathers' active engagement during the reproductive process. In turn, as surrogates detached from their pregnancies, gay fathers' presence enabled their status as future parents. A mutual trusting relationship is a critical facet of positive surrogacy experiences, and an ethically important basis in which to uphold value and respect for a surrogate post-birth. Implications: The current study has important implications for surrogates, intended parents and health professionals working in the area of assisted reproduction. Addressing the intricate relationships and unique challenges of surrogacy is critical to assist clinicians, allied healthcare workers and policy makers develop more effective guidelines, and provide relevant resources, services and professional systems of support for those who wish to pursue surrogacy.
What social and ethical issues are identified in the health technology assessments of select assisted reproductive technologies
Health technology assessment (HTA) is an established evaluative tool used by institutions and governments to determine whether to fund and thereby implement health technologies. HTAs are intended to be systematic evaluations of the direct and indirect effects of these technologies on the set of social actors unique to those health technologies; evaluations that incorporate social and ethical information as well as economic and epidemiological. Information about social and ethical issues re health technologies is integral to the assessment of those technologies because the technologies themselves are value laden by virtue of the capital invested in their design and creation and the ends they are intended to address. For this reason, their implementation will have socio-ethical implications not only for their target populations but for the broader community by virtue of what they engender and displace. Commonly, however, ethics information incorporated into HTAs has been found to lack relevance and comprehensiveness, to be unsystematic, and to be only sporadically included in an explicit way. It is the hypothesis of this study that the above-noted deficits risk compromising the conclusions assessors reach in determining whether to recommend a health technology for funding and implementation. HTAs that lack ethics information cannot adequately provide a policy-relevant account of the potential impact of introducing those technologies on all the communities affected. Using ethically-rich assisted reproductive technologies (ART) as the focal class of health technologies, this descriptive and analytical study described what social and ethical issues about ARTs are identified in the health technology assessments of ARTs. To select the HTAs and ARTs of study, a rigorous methodology was employed that incorporated established HTA search engines, validated definitions for the subjects of focus, and relevant MESH terms. Eighteen HTAs met the inclusion criteria and were analyzed using a template analysis technique that allowed for use of an a priori structure qua ‘template’ that “represents the relationships between themes, as defined by the researcher” . A taxonomy created by Daryl Pullman for use in the ethical analysis portion of health technology assessments served as this template. This taxonomy utilizes two theoretical approaches long-established in the bioethics literature: consequentialist/utilitarian and duty-based/deontological, and treats them as complementary rather than in conflict. HTA reports chosen for the study were screened using the template, and the descriptive and normative ethics-related issues qua codes identified were used to populate the template before being developed into hierarchical themes. The study will have been concluded by the time of the conference. Preliminary results indicate that there is a) considerable variance in the quantity of ethics analysis in HTAs and in the ways in which it is incorporated into recommendations and b) some consistency across HTAs in the ethical and social issues identified as relevant to the assessment of the ARTs under review with safety being the primary theme.
6B : Case Studies Show Details Symphonie 3B
Sainte-Justine au futur… Patients et parents rêvent leur hôpital de demain!
Michel Lorange, Dr Antoine Payot, Dr Elie Haddad
Le Centre hospitalier universitaire Sainte-Justine (CHUSJ) est le plus grand centre hospitalier mère-enfant au Canada. Dans le but d’améliorer les soins et services offerts aux patients et à leurs proches, une recherche a été menée pour permettre aux patients et à leur famille d’exprimer leur rêve de ce que devrait être leu hôpital du futur. Treize groupes de discussion ont été menés avec des patients (enfants, adolescents et adultes), ainsi qu’avec leurs proches (parents, conjoints, fratrie, grands-parents) entre novembre 2014 et mai 2015. L’analyse inductive à partir des verbatim s’est effectuée avec une approche inspirée de la théorisation ancrée. Les résultats montrent que le principal rêve que les participants désirent voir se réaliser est que tous au CHUSJ les aident à composer avec la maladie et les transformations de leur vie que la maladie engendre. Trois thèmes majeurs ressortent pour atteindre cet objectif : 1. La Reconnaissance de ce que représente leur vie avec la maladie – les émotions, la coexistence du deuil et de l’espoir, le deuil de la normalité –, de l’apprentissage de la gestion de la maladie, et du besoin d’avoir une continuité relationnelle et thérapeutique dans leur relation de soins avec tous les intervenants. À cet égard, « le » moyen qu’ils ont identifié comme celui qui les a le plus aidés à composer avec la maladie et les transformations de la vie est la présence d’un intervenant pivot relationnel. 2. Une relation de Partenariat avec tous les soignants. La relation traditionnelle où les médecins et professionnels proposent ce qui leur semble convenir le mieux à leurs besoins est remis en question. Enfants et parents veulent davantage participer aux prises de décision en tant que partenaires de soins. 3. Toute personne qui œuvre à Sainte-Justine doit se considérer comme soignant. Chaque travailleur de l’hôpital contribue à donner des soins, directement ou indirectement, et contribue à prendre soin par chaque geste posé et par son attitude face aux enfants et leurs parents. Le rêve des participants à cette recherche s’articule autour du concept d’humanisation des soins. Les participants aux groupes de discussion demandent aux médecins, aux infirmières, à tous les professionnels et tout le personnel, d’entrer en relation de confiance, d’être curieux de l’autre, d’être généreux de leur personne et de leur temps. Ceci constitue un délicat équilibre entre l’ouverture tout en demeurant professionnel dans la relation. Le CHUSJ rêvé par les participants est un hôpital où chacun ose entrer en relation, s’intéresser et s’ajuster à l’autre. L’actualisation du rêve des participants peu s’atteindre simplement et à peu de coûts, par une attitude ouverte et disponible, et un souci constant de continuité relationnelle et des soins. Une approche organisationnelle est nécessaire pour actualiser une prise de conscience collective, et ces changements de paradigme.
La gestion des conflits d’intérêts au sein des comités consultatifs d’experts en santé publique : une étude de cas en immunisation
Anne-Isabelle Cloutier, Jean-Christophe Bélisle-Pipon, Louise Ringuette, Victoria Doudenkova, Bryn Williams-Jones
Au Québec, au Canada et à l’international, des comités consultatifs d’experts (CCE) conseillent et orientent les décideurs gouvernementaux dans le choix de médicaments ou de vaccins à utiliser ou d’interventions à mettre en place. En tant qu’experts mandatés par des autorités publiques, les membres des CCE ont un rôle de protection du public à jouer et ils se doivent d’agir de façon indépendante. Cependant, à titre de chercheurs, ils font face à un financement public de plus en plus limité et au désir du gouvernement d’encourager les collaborations entre le monde universitaire et le secteur privé. Cette réalité pousse ainsi les chercheurs à se rapprocher des compagnies privées, créant ainsi un lien de dépendance. En effet, ce sont les compagnies qui financent (totalement ou en partie) leurs projets et qui permettent aux experts de produire des connaissances scientifiques dans leur domaine d’expertise. Cette situation les met à risque de conflits d’intérêts et peut, éventuellement, miner la confiance de la population envers la prise de décision publique. D’ailleurs, de récentes controverses impliquant des membres de CCE en situation de conflit d’intérêts et ayant influencé les décisions publiques à leur avantage (ex. : H1N1, Tamiflu, Ebola) ont ébranlé des institutions publiques et éprouvé la confiance du public envers les décideurs. Afin d’illustrer les dilemmes que peuvent vivre les experts des CCE, une étude de cas concernant un comité consultatif d’experts en immunisation (CCEI) est présentée pour susciter une réflexion quant aux éléments à considérer pour assurer une saine divulgation et une gestion transparente des intérêts. Comme les autres comités consultatifs d’experts, les CCEI sont financés par des fonds publics et ils sont investis de pouvoirs et de responsabilités par des gouvernements élus démocratiquement. Ils jouent un rôle social crucial dans la protection de la santé et du bien-être des communautés et ils ont le pouvoir d’influencer les politiques publiques. Il est donc essentiel que leurs décisions soient transparentes et qu’elles visent le bien-être de la population, sans subir l’influence d’intérêts secondaires comme le gain financier ou le désir d’assurer le financement de projets de recherches. La présence de codes d’éthique et de mécanismes de divulgation et de gestions d’intérêts est primordiale pour permettre aux CCEI de légitimer leurs activités en imposant aux membres des principes scientifiques et éthiques guidant leur pratique. Non seulement est-il essentiel que ces codes et ces mécanismes existent, mais il est souhaitable qu’ils soient divulgués au public afin d’accentuer l’imputabilité des membres experts et des CCEI en tant qu’organisation ayant un rôle crucial à jour pour le bien-être de la population. Basée sur des données empiriques provenant d'un projet de recherche, la présente étude de cas présentera en quoi les bonnes pratiques en matière de transparence sont plus qu'une simple question de codes d'éthique. L’étude de cas engagera les participants à mieux comprendre comment dans la pratique se manifestent les conflits d’intérêts et comment un comité d’experts peut arriver à bien les gérer.
Failing to Provide the Necessaries of Life: the Ezekiel Stephan Case
Nineteen month-old Ezekiel Stephan died in March 8, 2012, of bacterial meningitis. The Alberta Children’s Hospital where he was being treated had discontinued life support after five days under their care. His parents, David and Collett were subsequently charged under Section 251 of the Criminal Code for “failing to provide the necessaries of life.” The court heard that the Stephans, believing their son to have had croup or flu, tried to treat him at home for two and a half weeks with natural remedies. Ezekiel had also been examined at Lethbridge Naturopathic Clinic where this parents were advised that he should be given a nutritional supplement brand-named “EM Powerplus (Truehope): a supplement intended to “boost his immune system.” The court also heard that Ezekiel had never been vaccinated, which would have increased his chances of developing bacterial meningitis in the first place. This case highlights basic questions about the role of parents in cases of this kind, but also - and perhaps equally - those of naturopathic practitioners, the regulatory regime around the practice of naturopathy and the regulation of natural health products by Health Canada. Given that the Stephans sought what they believed to be professional medical advice concerning the care of Ezekiel and, given that naturopathy has been recognized as a regulated healthcare profession since 2012, why would that not satisfy the legal obligation to provide adequate care for their child? Are naturopaths adequately trained to serve as primary care physicians? And, finally, what of Health Canada’s role in the approval of products like EMPowerplus as “safe” and “effective?” While there is much about this case that cannot be known for reasons of privacy and confidentiality, discussion will be based on what is known publically through court proceedings
6C : Clinical Ethics Show Details Symphonie 3A
Addressing Interprofessional Team Challenges Caring for Long Term Care Residents Throughout the Dying Process: Toward Ethical and Effective Support
RESEARCHERPatricia Rodney (University of British Columbia [UBC] nursing faculty), Anne Leclerc ( Providence Health Care [PHC] physiotherapist), Chris Bernard (PHC spiritual health practitioner), Kit Chan (PHC dietitian), Karen Pott (PHC occupational therapist), Annes Song (PHC registered nurse); RESEACH ASSISTANTS: Nora Abdoh (UBC nursing undergraduate student), Nassim Adhami (UBC nursing doctoral candidate), Laura Gall (UBC nursing undergraduate student), Jeff Yu (UBC nursing undergraduate student).
As the Canadian population ages, more people will die in long term care (LTC), with estimates as high as 39% of residents dying in their LTC home (each year) by 2020 (Marcella & Kelley, 2015). While this trend puts increasing stress on residents and their families, it also affects the stress of interprofessional health care providers (HCPs) in LTC, who are dealing with increasingly complex resident and family needs throughout the dying process (Marcella & Kelley, 2015) in an era of constrained resources across Canadian health care delivery sectors. Thus, there are important intersecting vulnerabilities for LTC residents, their families, and LTC HCPs. These vulnerabilities reflect the ethical tensions arising from the obligation to provide ethical and effective end of life care for residents and their families and also support the moral agency and well being of HCPs. At Providence Health Care (PHC) in British Columbia we are facing the Canadian challenges noted above. PHC LTC facilities are increasingly providing end of life care, with approximately 35% of residents dying each year and 8% of residents within the first 3 months after ‘moving-in’ or admission. This has generated an increase in related stress across all sites and all levels of staff (care aides, nurses, rehabilitation staff, and other allied staff) caring for dying residents. While this trend is echoed nationally and internationally, we are committed to taking action at PHC to improve the health and well being of all LTC HCPs in relation to their care of dying residents and those residents' families. Our team of researchers has embarked on a program of research to alleviate and prevent workplace stress and moral distress related to LTC resident deaths for HCPs from all backgrounds, across all kinds of practice, and across all PHC LTC sites. In this paper we present the results of our recent descriptive survey study (2016, funded by PHC) examining the stress and burnout of HCPs caring for dying residents. We also describe our current action research program (2016-2017, funded by WorkSafeBC) generating strategies to prevent and alleviate workplace stress and moral distress related to LTC resident deaths for HCPs. Our overall goal is to foster ethical and effective end of life care for residents and their families while simultaneously supporting the moral agency and well being of HCPs.
Addressing Health Care Provider Vulnerability in Alberta; the development of a Supportive Review process following medically assisted death
A medically assisted death (MAID) is not an inherent crisis or adverse event. Still, the legalization of medical assistance in dying created new clinical, spiritual, and moral ground, bringing unknown stresses and challenges for many. Great care continues to be necessary to ensure that MAID is provided with the required compassion, expertise, and organizational supports for those individuals providing and affected by this service. In anticipation of the time when medical assistance in dying was to become legal, the Alberta Health Services Medical Assistance in Dying Secretariat, under the guidance from the AHS Clinical Ethics Service, developed a Supportive Review process intended to respond to vulnerability among staff and physicians facing MAID either as direct providers or as individuals indirectly affected by the event. Supportive Review conversations following assisted death were established as part of the operationalization of MAID procedures to provide a forum for health care providers to reflect on their experiences and provide input about how to improve practice. The Supportive Review conversations provides a means to support the diverse views about medical assistance in dying and to enable continued respect for health care providers’ decisions to decline to be involved in the procedure for reasons of conscience. This presentation outlines the background, development, structure, and implementation of the AHS Supportive Review process. It reviews how the role has expanded since its inception, the challenges of planning and facilitation in a large and diverse health region, and reports on other lessons learned over the months since implementation.
Toward an open dialogue on miscarriage and recurrent pregnancy loss
A woman walks into a clinic to see her family doctor. She has been trying to have a baby for over two years, and has miscarried twice in that time, most recently 10 months ago. In the last 6 months she has noticed that she is not ovulating every month, and that her cycles are long and irregular. The doctor listens to her concerns but tells her that she must wait to see if the issue clears up on its own. This woman--along with many others--falls into a gap in women’s health care. She was able to become pregnant twice without medical intervention, but has not been able to carry those pregnancies to term. And while she lost both pregnancies, she has been told that she must conceive and lose a third in order to meet the criteria for a diagnosis of recurrent miscarriage and be referred for further testing. The reasoning behind this requirement is not immediately clear. It seems related to resource allocation, and it may be the case that fewer healthcare dollars are required to care for a woman after miscarriage than are required to investigate the reason for her recurrent pregnancy loss. However, there may also be an element of stigma, an unwillingness on the part of healthcare professionals to speak about pregnancy loss, or a lack of motivation to spend time solving what they do not consider to be a problem. Whatever the reason, I will argue that the current requirements appear to be based on an overly simplistic understanding of female fertility--including a reluctance to have an open dialogue about the incidence of and reasons for miscarriage--and that they fail to give sufficient consideration to the well-being--especially the mental well-being--of women who have miscarried and are trying to conceive again. Little, if anything, is lost by starting to investigate potential causes of miscarriage at an earlier stage. Further to improving the mental well-being of women who have experienced pregnancy loss, a more open and honest attitude toward miscarriage will improve healthcare for all women, and will allow healthcare practitioners to meet their ethical obligations and support women--and their partners--at times of vulnerability.
6D : Ethics of Publicity and Marketing Show Details Symphonie 4
Ethics of Publicity and Marketing
To Regulate or Not to Regulate: the Case of Direct to Consumer Genetic Testing
Elise Smith, David Resnik
Over the last few decades, the question of whether to regulate Direct to Consumer Genetic Testing (DTC-GT) has been the subject of much debate in the public media as well as in the scholarly literature of ethics and health policy. Companies such as 23andMe, deCODEme and Color Genomics market genetic tests which may be ordered directly via the internet, forgoing the traditional doctor-patient venue. DTC-GT analysis of genetic variants (or single nucleotide polymorphisms) provides information about physical traits, ancestry and more than 250 health-related risks such as obesity, alcoholism, breast cancer, Alzheimer’s and Parkinson’s to name a few. Those in favor of regulation contend that genetic testing is often too complex, uncertain, and inaccurate for many individuals to understand and interpret. Some people may experience adverse psychological reactions from receiving health-related genetic information and make inadvisable medical or economic choices based on a misunderstanding. Conversely opponents of regulation argue that individuals have the right to access their health information (including genetic information), and claim that regulation would interfere with research and clinical care and be too costly. Scholars examining the issue have thought of it in black and white terms: should we regulate or not? Opponents of regulation have equated it with the type of oversight that applies to drug, biologics, and medical devices, i.e. several stages of clinical trials prior to product approval. We argue that this way of framing the issue is too simplistic and that there may be forms of regulation which are less burdensome than those typically applied to new medical products. For example, governments could require genetic testing companies to comply with standards of quality control standards to ensure that results are accurate and reliable, provide evidence for claimed associations between variants and diseases, and to make counseling services available to individuals who may have difficulty understanding or interpreting genetic information. These modest regulations would help to protect consumers from harm without unduly restricting their rights or interfering with clinical research or practice.
Menstrual Suppression Advertisements: How Does a Rhetoric of Choice Affect Reproductive Autonomy?
Jean-Christophe Bélisle-Pipon, Vardit Ravitsky, Victoria Doudenkova, Bryn Williams-Jones
Commercialized for over half a century, hormonal contraceptive drugs (HCD) are now ubiquitous in Western countries. In addition to their effect on women’s emancipation and reproductive autonomy, their success is partly due to pharmaceutical companies’ advertising efforts emphasizing non-contraceptive dimensions that pertain to women’s lifestyles. After initially being advertised in North America as a way to treat severe acne and premenstrual dysphoric disorder and permit menstruation frequency reduction, since 2003, extended HCD regime (eHCDr) have been marketed as a means of complete menstrual suppression, either as a side effect (with products such as Depo Provera and Mirena), or as a primary indication (Seasonale/Seasonique). These “extended HCD regimen” (eHCDr) products interfere with hormonal mechanisms and prevent menstrual flow. In comparison with traditional oral contraceptives, which mimic a woman’s natural cycle using a combination of active pills and placebos following a 21/7 regimen, eHCDr extend the continuous action of hormones to block the regular hormonal cycle. For instance, Seasonale works on an 84/7 regimen (three months of active pills instead of three weeks); women taking this drug thus experience four withdrawal bleedings annually instead of 12. Lybrel, launched in 2007, consists of 365 active pills without any placebo, and is designed to completely eliminate monthly bleedings. With the advent of eHCDr, the language of “choice” regarding when to procreate, that was initially associated with HCD, has been replaced by “the convenience” of living without menstruations. These advertisements promote the positive value of controlling menstrual cycles while downplaying the drugs’ adverse effects and even trivializing their use. Paradoxically, HCD was initially framed as liberating women by giving them control over their reproduction, but in downplaying the problems associated with the return of fertility and the masking of underlying fertility problems, eHCDr may in fact reduce a woman’s capacity to make informed decisions about when to conceive, thereby significantly restricting her reproductive autonomy. This presentation focuses on the impact of eHCDr drug promotion on reproductive autonomy, both with regards to women’s control of their daily lives and their reproduction. We reject the framing of reproductive autonomy in drug promotion as simply a matter of “lifestyle choice”, and argue for a more critical understanding of the social and cultural factors (expectations, pressures, social constructs) that frame “womanhood” with a rather limited view of autonomy.
Hashtags, slams, and zines: locating modern healthcare counterstories for inclusive practice
In discussions of how personal identity is grounded in narrative, Hilde Lindemann Nelson reveals how powerful social groups create and perpetuate harmful false narratives about less powerful groups, and how those false narratives damage senses of individual and social identity. These mandatory identities set up expectations about how individuals should behave and exist in society, and internalizations of these narratives can disrupt individuals’ sense of self, value, and worth. For example, the narratives which suggest that people with mental illnesses are necessarily a threat to others (reified in lone-male-shooter media coverage), that people with disabilities are privileged and lazy. Nelson proposes we resist these harmful narratives through “counterstories” which are designed to resist the “master narratives” and repair the damage inflicted on identities by abusive power systems. If narrative ethics and narrative medicine strive to be anti-oppressive inclusive practices, then, we should strive to be aware of, and resist, harmful master narratives which influence and determine our engagement with patients. Without seeking out and resisting master narratives, we may risk interpreting patient narratives and engaging in narrative exchanges through harmful oppressive frameworks, and thus risk complicity in systems of injustice and the unequal treatment of those so-called “vulnerable” populations who are already face social and institutional barriers to healthcare access. However, healthcare institutions have often been a site of silencing and injustice, and it seems unlikely that those who stand to most benefit from the centering of healthcare counterstories will feel comfortable bringing them into institutional medical spaces. Subversive narratives from healthcare users and ill and disabled populations confirm this intuition. How then do we locate and centre modern healthcare counterstories? In this presentation, I build on historical examples, healthcare (counter)narratives, personal experience, and the theory of “third place” to identify some spaces where healthcare counterstories are erupting, and how to engage with/in them. In doing so, I suggest ways of listening to and integrating those counterstories—as well as adopting structural spatial features that enable the sharing of those counterstories—to motivate and develop a more inclusive narrative medical practice. As a result, I aim to demonstrate that narrative medical practices need to shift focuses beyond institutional interactions, and beyond case studies and published narratives, to the more accessible social spaces where narratives erupt—inclusive of digital, physical, and material spaces and narratives—and to bring those spaces into practices. By learning how to better locate and understand counterstories, and how they challenge dominant healthcare narratives, we can come to better understand, respect, and care for those who have been institutionally and historically silenced, and build toward a more inclusive anti-oppressive narrative-informed medical practice.
6E : Health, Refugees and Power Imbalance Show Details Symphonie 1
Health, Refugees and Power Imbalance
Impacts of the Interim Federal Health Program on healthcare access and provision for refugees and refugee claimants in Canada: A stakeholder analysis
Valentina Antonipillai, Dr. Andrea Baumann, Dr. Andrea Hunter, Dr. Olive Wahoush, Dr. Tim 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 (n=6), policy makers and government officials (n=5), civil society organizations (n=6) and professionals and practitioners (n=6). 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 the barrier and facilitators to 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: The study highlights that the IFHP reforms in 2014 have transferred refugee health responsibility to provincial authorities resulting in bureaucratic strains, inefficiencies, overburdened administration and delayed healthcare seeking by refugees due to existing barriers. There are some benefits to the reforms, but lack of support and mixed opinions among the majority of stakeholders emphasize the need for reformulation of policy with stakeholder engagement. Future refugee health reform strategies should incorporate stakeholder collaboration and perspectives, as revealed in this research, to move healthcare policy from theory to practice.
Humanity's Market Correction: Singer's Drowning Child and the Global Refugee Crisis
Peter Singer's seminal article "Famine, Affluence and Morality" (1972) uses the thought experiment of the drowning child to argue that those of us in affluent countries have an ethical duty to help distant strangers as we do to help those in close proximity: that distance (geographic or affective) does not justify deadly neglect. In light of current wars and the global refugee crisis, this assertion warrants revisiting. We must now question why -- perhaps surprisingly -- policies of deadly neglect have come to dominate world politics. Singer's metaphor of the drowning child is all too real in the Mediterranean Sea where more than 4,600 people have died trying to make the perilous crossing. And despite overcrowded boats and the Internet bringing distant strangers into close proximity (and apart from the odd wave of compassion splashing across social media), we are seeing a growing current of reactionary far-right sentiment dehumanizing the metaphorical and literal drowning child. Based on a critical interpretation of current conditions, I argue that Singer's appeal for compassion fails not for its utilitarian logic but for overlooking neoliberal hegemony that shapes knowledge, perception, and ethics. Singer's thought experiment fails to take into account that under capitalism, well-being is commodified and concentrated by market forces, thereby making succor a privilege and not a right. Shocks of global financial crises, the climate crisis and resource scarcity summon calls for walls, not life rafts. International humanitarian law and the Geneva Conventions are perceived by electorates in affluent countries to run counter to their national security and consumerist way of life. In this neoconservative ethic, suffering and death are an unfortunate albeit necessary market correction to humanity. The downward market sees a period of moral austerity that sets strict limits on compassion. Singer's drowning child is written off as a necessary loss and xenophobia provides a compelling rationale. On the margins, humanitarianism is tolerated to the extent that it maintains strangers at a distance without taxing wealth. Humanitarian action is reduced to an act of charity, stripped of any activist agenda that could challenge the dominant neoliberal paradigm. This interpretation, although bleak, demonstrates how ethics is subject to prevailing ideological conditions. To counter humanity's market correction, saving Singer's drowning child -- that is, upholding humanitarian principles -- is a necessitated act of defiance.
Les enjeux éthiques de l’asymétrie de pouvoir en contexte de recherche nord-sud en santé mondiale. Une étude qualitative en Côte d’Ivoire
Patrick Anges Gogognon
Contexte L’asymétrie de pouvoir est une notion qui renvoie à une relation inégalitaire dans un contexte social ou institutionnel injuste. Dans la recherche nord-sud en santé mondiale les préoccupations pour l’asymétrie de pouvoir se révèlent par exemple à propos de la définition des priorités et des règles de financement de la recherche. Cette notion soulève donc des enjeux de justice et d’équité pour les institutions de recherche, les chercheurs et les communautés en particulier dans les pays en développement. Pour les chercheurs de ces pays l’asymétrie de pouvoir peut constituer un obstacle pour une recherche efficace et équitable et ils courent des risques de se trouver en situation de vulnérabilité. Objectifs Ces enjeux sont largement discutés dans la littérature et les chercheurs peuvent disposer de guides pour gérer l’asymétrie de pouvoir et favoriser des recherches équitables. Cependant ce phénomène reste encore étudié au plan théorique et il existe peu de données empiriques particulièrement dans les pays en développement. Cette étude a donc pour objectifs d’identifier les facteurs et les mécanismes de l’asymétrie de pouvoir dans la recherche en santé mondiale dans la perspective des chercheurs dans un pays du sud. Méthodologie Nous avons mené une étude qualitative auprès de 19 chercheurs en santé en Côte d’Ivoire. Des entrevues semi-dirigées ont été réalisées pour évaluer leur perception sur les facteurs qui influencent l’asymétrie de pouvoir et les mécanismes par lesquels ils opèrent. Les entrevues ont été enregistrées, retranscrites et nous avons effectué une analyse thématique du contenu. Résultats Les résultats préliminaires révèlent deux thèmes principaux : 1/ les défis de l’allocation des ressources pour la recherche comme facteurs contribuant à l’émergence de l’asymétrie de pouvoirs; 2/ les relations d’interdépendance entre chercheurs comme mécanismes de l’asymétrie de pouvoirs. Nos données suggèrent que l’asymétrie de pouvoir implique des dimensions de conflit d’intérêts, de responsabilité et relations professionnelles dans la conduite de la recherche. Les facteurs et les mécanismes de ce phénomène pourraient avoir des causes structurelles inhérentes au milieu de la recherche. Notre étude révèle un contraste entre des pratiques de terrain qui placent les chercheurs en situation de vulnérabilité et les intentions visant à renforcer la justice et l’équité dans la recherche. Cette étude représente une contribution importante pour une meilleure compréhension du rôle qu’occupent l’accès aux ressources et les relations d’interdépendance dans l’asymétrie de pouvoir particulièrement dans la recherche menée dans les pays en développement. Nous recommandons d’autres études pour évaluer dans ces pays l’influence de la gouvernance des institutions de recherche dans l’asymétrie de pouvoir.
6F : Ethics Consultation Show Details Symphonie 2
Le développement d’une offre de services en éthique dans un contexte de changements
Catherine Rodrigue, Stéphanie Côté
La récente réforme québécoise en santé a apporté son lot de changements au sein des établissements de santé et services sociaux. Notamment, au plan de l’éthique qui occupe désormais une place officielle au sein des structures via une direction qualité, performance et éthique. L’objectif de cette présentation est d’illustrer l’offre de services en éthique clinique et organisationnelle pour notre établissement. Plus spécifiquement, les mandats, les objectifs, les défis seront présentés. Le CIUSSS de l’Ouest-de-l’Île-de-Montréal (ci-après CIUSSS) résulte d’une fusion de 8 établissements aux ressources en éthique variables. Historiquement, le CIUSSS comptait six comités d’éthique clinique et six spécialistes en éthique dont un conseiller en éthique à temps partiel et cinq consultants aux heures limitées. Un seul des établissements historiques n’avait pas de structure formelle en éthique. Depuis la réforme, le service-conseil en éthique clinique et organisationnelle a été créé et compte deux employés. Le développement d’une offre de services en éthique basé sur les principes d’intégration, viabilité et responsabilité se traduit, entre autres par l’implantation de la consultation en éthique pour l’ensemble du CIUSSS. Cependant, la nouvelle structure d’un établissement comme un CIUSSS pose de nombreux défis. Par exemple, un contexte de changements majeurs, des ressources matérielles et humaines limitées, un vaste territoire à couvrir comportant plusieurs installations, conséquemment nécessitant de nombreux déplacements. L’ensemble des défis que posent ces changements organisationnels, vulnérabilisent l’implantation et le déploiement de l’offre de services en éthique dont l’objectif poursuivi est d’assurer des services diligents, aidants et uniformes. Afin de palier à ces défis, il est nécessaire de fixer des objectifs réalistes, tenant compte à la fois du contexte et des ressources disponibles. L’harmonisation des pratiques des deux conseillères permet d’assurer une cohérence et la qualité des services offerts. Des outils ont été développés, dont une base de données ainsi que des formulaires de cueillette de données, de consultation et d’avis éthique. Leurs utilisations permet de gagner du temps et facilite la reddition de comptes. Les conseillères participent à de multiples rencontres d’équipes, ces activités favorisent ainsi la compréhension du terrain et permettent d’établir une relation de confiance avec les intervenants. Finalement, la collaboration étroite avec le service des communications favorise la promotion du service-conseil et assure une utilisation optimale des ressources internes.
Choose Your Own Interpretation: Developing a Resource That Reflects the Ethics Consultation Process
Overview: Often we preface the answer to any particular ethics query with, “It depends…” In this presentation, I describe the development of a resource that is intended to help learners and health care providers interrogate what it might depend on in greater detail. In providing education and building capacity around ethics consultation, we are frequently asked for resources that illustrate how ethicists think through cases. In response to these requests, we are exploring ways to capitalize on the functionality available in online environments to illustrate how ethicists approach consultation. Motivation: Existing resources on ethics consultation for medical learners, health care providers, and ethics committees tend to present a case, a discussion of how it was addressed, lessons learned from the experience, and a resolution. What is frequently missing from these narratives is a sense of alternate ways in which the consult might have unfolded if there had been different emphases, whether on other values and principles, other contextual features of the case, or if the consultant reasoned differently. The audience for this resource is individuals training in ethics consultation and learners in the health professions. Taking inspiration from the Choose Your Own Adventure… series, this resource aims to effectively reflect the complexity both of ethics consultation and of decision making when engaging in ethics consultation. Contextual features often determine which values we turn to, inflect the interpretation of those values, and distinguish between cases that might at first glance seem similar. Our desire is to capture relevant contextual features of a case and illustrate the effects that they have on reasoning in consultation. Background: We began by considering how this content might be presented in an e-book format that integrated multimedia content but still had a linear progression. It became clear that our pedagogical goals would not be best served by this format. We therefore decided instead to develop a resource that would react to learners’ responses and enable them to appreciate how different choices might lead to alternate outcomes. We began discussions with publishers, who indicated that the project was worthwhile but beyond the scope of their product lines and encouraged us to pursue other avenues for development. Development: We engaged students in Computer Science to aid in the development of a working prototype. The students were enthusiastic and it was both challenging and beneficial to create a novel resource with individuals who did not have familiarity with the subject area, forcing us to carefully conceptualize what the resource is intended to do. Demonstration: I will demonstrate the resource as it has been developed thus far, highlighting the main challenges that we have encountered in the development process. Limitations and Challenges: We will conclude by highlighting the ways in which our translation of an ethics consultant’s approach to a case into this resource is facilitated as well as limited by currently-available technology.
Touch in Medical Care: A Corporeal Conversation
Touch is constant in medical care. When one walks through the doors of healthcare facility, the previously accepted boundaries of the body are redefined. A relative stranger now investigates areas of the body that are otherwise reserved for one’s most intimate companions. My paper uses feminist phenomenology to investigate patients’ and medical professionals’ haptic experience in medical care, and ultimately advocates for a receptive and attuning type of touch that encourages the healing process. Dualistic understandings of tactile interaction designate one person as touching and another as touched. This approach to physical contact encourages one to touch another as though she were an object, thus reducing her to her biology and not adequately acknowledging the deep intimacy that occurs in interpersonal contact. Using the feminist philosophy of Luce Irigaray (1985) and Alia Al-Saji (2010), I argue that when two people touch there is a communion that surpasses the binary of subject/object. As the two connect and attune to each other’s movement, neither is strictly active or passive, rather both take on the position of an active-listener. This more fluid conception of interpersonal touch encourages one to attend to the particularities of the person one engages with. By attuning contact according to the other’s physical, spiritual, emotional, and social needs, touch can be a profound act of affirmation. Touch that attunes to each party’s needs is relevant to healthcare as it can have a profound effect on healing. A cure indicates restoration from disease and freedom from further ailment, while healing encompasses a broad understanding of human vitality by recognizing that pain and wellness are not confined merely to the physical realm. Healing is a fluid development in which internal or external tensions are eased, ultimately leading towards a deeper state of peace. Such a process involves all dimensions of the self, including the spiritual, emotional, spatial, physical, social, and environmental. Touch in care must take all of these elements into consideration if it is to encourage multi-dimensional health. Human subjects are ever evolving, and therefore treating each person with the same objective touch disregards the fluctuating nature of their beings. Instead, the hand must adopt the role of active listener. Is the person tense? Irritated? Silly? Sleepy? The hand must intuit these answers and adapt accordingly. In doing so, the caregiver goes beyond treating the patient as an object and affirms their unique personhood. Verbal communication will often aid physical interaction by explicitly confirming another’s needs, but a silent conversation occurs simultaneously as a hand lightens upon a site of tension or slows down when detecting the trickling sensation of ease. The tactile conversation is generated mutually by both beings, as they each respond and attune to the needs and pleasures of the other. By responding to the patient’s body, medical professionals have the potential to affirm the patient’s personhood without extra spending or time.
|10:00 am - 10:30 am|
Morning Refreshment Break & Poster Viewing Grand Salon Foyer
Morning Refreshment Break & Poster Viewing
|10:30 am - 12:00 pm|
7A : Assisted Reproductive Technologies Show Details Symphonie 1
Assisted Reproductive Technologies
Vulnerability and Moral Responsibility in Choosing Assisted Reproduction
The philosophical and bioethical literature on egg donation and surrogacy tends to make use of “vulnerability” when discussing the positions of donors or surrogates. There is also a trend to critique systemic problems with health regulation or reproductive travel, pointing to ways in which these systems contribute to the vulnerability of donors or surrogates (e.g., Downie and Baylis 2013, Baylis 2014, Panitch 2013, Deckha 2016). What risks falling through the cracks of these discussions is a consideration of the people who might be exploring egg donation or surrogacy as means to assist their reproduction. How should potential intended parents approach thinking about egg donation and surrogacy? How should they think about vulnerability with respect to their own positions, or to the positions of a donor or a surrogate? What is significant about the way donor or surrogates’ labour is conceptualized? How should intended parents navigate the ethical ambiguities within the Assisted Human Reproduction Act? The central aim of this presentation is to take seriously the moral deliberation of intended parents. I will outline moral considerations about undertaking egg donation or surrogacy by focusing on the intended parents as moral agents wishing to undertake reproduction ethically. What responsibilities and concerns about vulnerability are most salient for intended parents to reflect upon in undertaking assisted reproduction? I draw on philosophers Hannah Arendt and Iris Marion Young’s respective accounts of moral responsibility to think about the ethical obligations of intended parents. Arendt is helpful for situating moral responsibility relationally, and Young for situating moral responsibility within structures of injustice. Even though intended parents may have less power than governments or fertility clinics to address structural injustice, intended parents do participate in these structures and have obligations to mitigate vulnerability where they can. As part of this project, I will explore how the relationship between intended parents and donors or surrogates might be more robust conceptually than mere contractual arrangements. I will rely on “gift narratives” to help assess how intended parents currently conceptualize their relationships with donors. (Gift narratives refer to the ways in which intended parents, donors, surrogates, or clinicians refer to assisted reproduction as a gift). I suspect that considerations of vulnerability will entail that intended parents ought to view assisted reproduction as the founding of a moral relationship that cannot be merely described in terms of a contractual relationship.
Who is vulnerable in anonymous gamete conception?
The question of how best to provide for vulnerable groups is a key issue when determining how to equitably structure public policies and distribute limited resources. As such, bioethicists, policy makers, and members of other groups who represent authoritative and powerful positions carry a significant responsibility for accurately and compassionately identifying vulnerable groups (Misztal, 2011). However, sometimes the narratives accepted by bioethicists and policy makers fail to tell the whole story. In my presentation, I would like to bring attention to two groups that many reproductive policies worldwide fail to take into account--- and which Canada may also be at risk of overlooking (Guichon, 2010). These two vulnerable groups include gamete donors (Steinbock, 2004) and same-sex and single intended parents (Cameron et al., 2010). The common narrative is something like this: gamete donation has been dominated with secrecy and anonymity for too long. Donor-conceived individuals are a vulnerable group because they are the most harmed by anonymous gamete donation and because they lack a voice in determining the circumstances of their conception (Daniels, 2007). Moreover, they are deprived of something they have a right to, namely knowledge of their gamete donor (Ravitsky, 2014). Therefore, anonymous gamete donations should be banned (Kramer et al. 2013). Such a narrative has led to the banning of anonymous gamete donations in the UK, Sweden, parts of Australia and parts of New Zealand (Janssens et al., 2011). There is a significant push within Canada to do that same (Cameron et al., 2010). I will question this narrative by providing an analysis of the interests of the three concerned parties. On my analysis, donor-conceived individuals are not the most vulnerable, and their interests in knowing a genetic donor do not necessarily outweigh the relevant interests of intended parents and donors to maintain donor anonymity. I will consider potential objections regarding the seeming inconsistency of classifying those who have access to expensive and state-of-the-art reproductive technologies as “vulnerable” groups. The hope, of course, is to be able to bring the interests of all the parties closer together: to allow intended parents a wide range of reproductive options, to protect the right to privacy of anonymous donors, and to provide donor-conceived individuals with the self-knowledge they seek. This presentation will explore potential options.
7B : Vulnerability and Youth Show Details Symphonie 3A
Vulnerability and Youth
The Multiple Faces of Vulnerability: Lessons Learned from Montreal Children and Youth Protection Center’s REB Members
Karine Bédard; Anne-Marie Tassé; Rossitza Nikolova; Sarah Dufour; Josée Mayo; Chantal Lavergne; Marie-Ève Clément; Francis Bissonnette;
While the notion of ‘vulnerability’ is often defined restrictively and limited to the notion of ‘capacity’, the practical experience of the members of the Research Ethics Board (REB) of the Montreal Children and Youth Protection Center seems to prove otherwise. Since its inception, the REB has been confronted to ethical issues related to the different faces of vulnerabilities, caused by the participants' age, captivity or psycho-socio-demographic profile. In addition to these well-known characteristics of vulnerability, the REB members also faced situations where the law for the protection of vulnerable participants created situations of vulnerability. And, in some cases, the REB has even been obliged to assess not only the vulnerability of the participants, but also the vulnerability of the researcher. Through a series of real cases and concrete examples, this session aims to widen the notion of vulnerability, assess the rights and responsibilities of REBs, provide practical responses, and open a discussion on the challenges of implementing protection schemes to vulnerable research populations to avoid falling through the cracks.
Youth rights, Youth Access to Health Care: A Scoping Review
Angel Petropanagos, Jennifer Gibson, Randi Zlotnik-Shaul, Leeann Chapman, and Alyssa Frampton
The United Nations Convention on the Rights of the Child “recognize[s] the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health” and its parties “strive to ensure that no child is deprived of his or her right of access to such health care services” (Article 24). In Canada, children and youth have health rights that are protected through federal law and through provincial and territorial legislation. Like all Canadians, youth (adolescents and young adults) have the right to access publicly funded health care services within their province or territory of residence. Canadian youth also have the right to consent to health care treatment and the right to privacy for their health care information. However, many young people are not aware of these rights, and even those who are, may face barriers in the exercise of their health rights, particularly in accessing health services. In September 2016, in collaboration with the Young Canadians Roundtable on Health, we conducted a scoping review of the relevant literature. Our study synthesizes current research on the practical and ethical issues related to the exercise of health rights and access to health services by Canadian youth. Our findings suggest several practical and normative barriers prevent youth in Canada from accessing and utilizing health care services. The practical barriers identified in our study include geographical, financial and time-related factors, which were most prevalent in the literature, as well as language and communication, information, privacy and confidentiality, environmental, and legal and policy-related factors. We also identified normative barriers, namely, assumptions about gender and sexual identity, socio-cultural factors, social biases and stigma. Indeed, the negative beliefs and attitudes of health care providers, youth, their families, and the broader community can seriously hinder youths’ abilities to exercise their health rights and to access care. We found that certain sub-populations of Canadian youth, such as Indigenous youth, gender and sex diverse youth, and street-involved youth are particularly vulnerable with respect to the exercise of their health rights. These sub-populations also face the biggest barriers to accessing health care services, especially within the contexts of sexual and reproductive health, mental health, and substance abuse. We maintain that there is a pressing need to understand the ways that multiple and intersecting barriers to care are experienced by youth across Canada. Most importantly, we argue that researchers and policy-makers ought to engage youth in the project of understanding and reducing or eliminating the practical and normative barriers to care. Youth should be included as collaborators in these research and policy endeavors. To conclude, we outline possible advocacy, research, and outreach projects that could be undertaken by the Young Canadians Roundtable on Health to support the promotion of youth’s health rights and access to care.
7C : Relational Dimensions of Decision-Making Show Details Grand Salon
Relational Dimensions of Decision-Making
Advance Care Planning for the Chronically Ill: An Exploration of Relational Autonomy in the Context of Future Care Decision Making
Tieghan Killackey; Elizabeth Peter; Jane MacIver; Shan Mohammed
Advance care planning (ACP) is the process by which individuals reflect on and articulate personal values and goals and identify a substitute decision maker with the intention of directing healthcare choices and guiding future medical treatment or end-of-life care. ACP is a complex social practice that exists at the intersection of law, ethics, politics, and healthcare, with the goal of preserving individual autonomy beyond the point at which personal capacity may be lost. This process is designed to support patient autonomy and involvement in health decision-making. A recent Canadian survey found that while the majority of Canadians (61%) thought ACP was important, few had engaged in the process. As chronic disease rates continue to increase, it is important that research explore the impact of ACP on patients living with non-oncological life-limiting illnesses and their families.
This presentation will discuss how the current biomedical model of healthcare, which dictates an individualistic approach to autonomy, does not sufficiently capture the relational, social and emotional components of the complex decision-making processes involved in ACP. A recent review of ACP literature will be presented, and critical social theory will be introduced as a means to explore why ACP has failed to achieve it’s intended goals within Westernized healthcare systems. This presentation will examine how the agentic skills necessary for individuals to successfully participate in ACP are developed through relational and social processes, and therefore that a relational conception of autonomy is necessary when considering patients who are making challenging medical decisions regarding future care wishes. Using the framework of relational autonomy, this presentation will examine the opportunities for chronically ill patients to develop and express autonomy through the ACP framework within current healthcare contexts.
When conflict exists between SDM and others, who gets to decide who can visit? Fostering relationships for the vulnerable adult.
Sandra Andreychuk, BScN, MHSc, MSc, Clinical Ethicist; Laurie Fox, BA, MSW, LL.M(ADR), RSW; Donna Peace, RSW, MHSc (Bioethics)
All too often we see conflict between members of a patient’s circle of friends and family. What happens when a patients is unable to articulate who they wish to have visit and when? Is this up to the SDM to decide? What if the SDM rejects visitors based on their own preferences of who they want around the patient, disregarding what the patient may want if he/she is able to express themselves. The purpose of this session is to explore the laws, or lack of, governing visitation for incapable patients in accordance with the HCCA and the Substitute Decisions Act. The presenters will share two recent cases that demonstrate the devastating effects of conflict between SDM and friends and family. The first is of a young man whose SDM (father) refused to allow his mother to visit or received information of the location of her son in the days leading up to his death. The other case is of a women denied access to her common-law partner after his parents unlawfully created POA papers listing his mother as his SDM. In both cases the relationship between the patient and person requesting visitation was in good standing however the relationships were strained between SDM and visitor. The impact of the SDM’s decision to not foster supportive relationships, despite the legal requirement to do so, for the vulnerable patients left the clinical and ethics team morally distressed. As a result of these two cases, the role of the SDM in patient visitation was addressed through the development of a hospital policy. The presenters will share this policy and strategies for staff, patient and SDM education around these circumstances and how one large tertiary acute care hospital is addressing this complex issue.
7D : Pharmaceutical Ethics Show Details Symphonie 4
Privately-funded chemotherapy medications provided in publicly-funded Canadian healthcare organizations: highlighting disparities & implications
Rosalind Abdool, Dianne Godkin, Michael Campbell, Eoin Connolly and James Anderson
Canadian cancer centres and hospitals continue to struggle with whether to allow self-pay (out of pocket or private insurance) for non-insured systemic therapies within publicly funded healthcare organizations. Each province determines which medications will be funded based on a cost-effective analysis, which incorporates the effectiveness of each medication in tandem with its affordability for the province to be covered under provincial drug plans. This process compares the cost-effectiveness and clinical impact of newly submitted medications in relation to therapies currently covered under the drug plan. The medications that are not funded may have clinical benefits, but they may nonetheless not be accepted based on the provincial funding formula. Since each province may fund different medications, a question of fairness arises within a country that boasts universal healthcare for its citizens. This session will explore and review the ethical arguments both in favor of and against the practice of privately-funded chemotherapy medications in publicly-funded healthcare organizations. Since the practice is varied across not only the country, but also within provinces, an ethical analysis would be helpful to provide a comprehensive ethical background for policy and decision-makers on this issue. The issues will be explored mainly through a distributive justice (Rawlsian) lens. Research that has already been completed on this issue involves surveying Canadian oncologists and their current practices, as well as their own perceptions of the practice. This research indicates that Canadian oncologists continue to struggle with these issues, which can lead to practices such as enrolling patients in clinical trials, referring patients to private infusion clinics, and occasionally misrepresenting patient information on reimbursement forms. Most commentators on this topic argue in favor of permitting publicly funded healthcare organizations to provide/administer privately-funded medications. There are several key ethical considerations and arguments made in favor of this practice. However, there is a significant gap in the literature regarding the ethical concerns for publicly-funded organizations especially with regards to questions of fairness and the potential impact on universal access to healthcare. On the one hand, arguments in favor of the practice highlight patient autonomy and compassion for those who may have the means to pay for non-funded systemic therapy, but who may be significantly burdened by lengthy travel (e.g. out of country) for the treatment. Having the same oncology team for regular assessments and also for treatments allows for continuity of care. Arguably, revenue generation may also improve overall care for publicly funded. On the other hand, Canadian hospitals are publicly funded organizations to provide “medically necessary” treatments to all eligible Canadians. Permitting self-pay could result in the displacement of publicly funded individuals, which should arguably not occur. Might contributing to a two-tiered system also result in less advocacy for publically funded drugs? This session will cogently and comprehensively raise these issues and others pertaining to chemotherapy self-pay in publicly funded hospitals.
An Analysis of the Normative Underpinnings of the National Pharmacare Policy Debate in Canada
Canada remains the only country with a mature public health insurance system that does not include broad pharmaceutical coverage (pharmacare). Instead, Canada’s pharmaceutical insurance landscape consists of a patchwork of public and private schemes that leaves many Canadians un- or underinsured, and has rendered access to medicines variable across jurisdictions as well as socioeconomic, age, and disease groups. Meanwhile, drug prices and per capita spending on pharmaceuticals in Canada is among the highest in the world and represents the second largest component of Canadian health systems costs. As pharmaceuticals grow increasingly significant in medical treatment and patient care moves to community (and thus uninsured) settings, facilitating access to necessary medicines is significant for improving health outcomes, reducing disparities in access within and between provinces, and managing strained health care budgets. Calls for a national pharmaceutical insurance scheme have resurfaced on the Canadian health policy and political agendas over the past several years. While Canadian pharmaceutical insurance policy has received attention in policy and evaluative sciences and health economics, there is little understanding of the values and norms that shape the contemporary pharmacare policy debate. I present the results of a qualitative research study examining Canadian policy documents and media opinion pieces published from 1997 to 2016 to characterize the explicit and implicit normative concepts—including procedural, substantive, and terminal values—that feature in and underpin arguments in the pharmacare policy debate. Drawing on relevant philosophical and bioethical literature—including Norman Daniels’ theory of justice in health and Joseph Heath’s articulation of efficiency as a guiding value in health insurance—I examine the robustness and coherence of the ethical underpinnings of the debate and consider whether perceived value conflicts are contributing to an impasse in Canadian pharmaceutical policy. I conclude with a reflection on the ethical principles and concepts that ought to inform Canadian pharmaceutical insurance policy reforms.
7E : Philosophical Perspectives Show Details Symphonie 2
Moral Courage in the Health Professions
Protecting the vulnerable is an essential aspect of health care. A standard way of doing this is by using protocols, guidelines and moral codes to direct the behaviour of nurses, physicians and other health professionals. This approach is useful and important, but not sufficient. To protect the vulnerable, be they patients or health professionals, health professionals must not only be directed a certain way, they must be a certain way, that is, they must have moral courage. This virtue enables them to do the right thing despite bullying, peer pressure, career threats, risk of humiliation, fear of error and so on. In The Mystery of Courage, Willian Ian Miller describes moral courage as lonely courage, which "often requires making a stand, calling attention to yourself, and running the risk of being singled out in an unpleasant and painful way" (2002, 255). I will begin by considering the need for moral courage in health care settings, especially with respect to managers and other leaders. I will then focus on three claims made in Must We Be Courageous? by Ann Hamric, John Arras and Margaret Mohrmann (Hastings Centre Report, 2015). The first claim is that there is no significant difference between physical courage and moral courage. The second claim is that although we should not distinguish physical courage from moral courage, we should distinguish courage that is in keeping with one’s moral duty as a health professional from courage that goes beyond one’s moral duty and should be identified as heroic. The third claim is that it is wrong to valorize courage while ignoring the unethical institutional structures that create the need for this virtue. Although hospitals and other health facilities should promote courage, they should also be committed to reducing the need for it.
“What is vulnerability?” Vulnerability, Autonomy and Moral Agency in Charles Taylor and Augustine
Pablo Irizar (BA, MA, PhL)
“Respect for Human Vulnerability” is an integral element of both the UNESCO Report of Respect for Human Vulnerability and Personal Integrity (2013) and the UNESCO Universal Declaration on Bioethics and Human Rights (2005). Surprisingly, neither of these documents defines “vulnerability”. In this presentation I engage with the question “what is vulnerability?” as it emerges within the the historical and experiential intersection of two inherently related themes: autonomy and morality. I proceed in three steps. (1) Invulnerability is generally considered a normative value in discourse on bioethical issues. I term this position normative invulnerability. Wherever arguments can be found in support of normative invulnerability, it is generally suggested that being prone to harm is undesirable and that doing harm is morally wrong. As such, invulnerability is defined as the empowerment with which autonomy procures individuals the capacity for moral agency. That is, the capacity to “do good and avoid (doing) harm”. Thus, invulnerability emerges as a fundamental requirement of moral agency. (2) However, this position raises a conundrum: is it possible to be autonomous yet vulnerable, vulnerable yet moral? To answer this question I turn to Charles Taylor and Augustine. I analyze the factors that bear on the development of (in)vulnerability vis-à-vis autonomy and “power politics” in Sources of the Self (1989) and A Secular Age (2007) by Charles Taylor. Crudely put, I argue that for Taylor autonomy is a rational illusion of power which only the invulnerable can afford. That is, Taylorʼs (deconstructive) narrative severs the bond between autonomy and invulnerability. In so doing, Taylor offers a critique of the normative status implicitly attributed to autonomous invulnerability prevalent in bioethics. (3) I then turn to the writings of Augustine to offer a phenomenological description of vulnerability. Specifically, I reconstruct Augustineʼs insight into vulnerability as a human condition from the stance point of intersubjective and intrasubjective experience. I base my analysis on phenomenological readings of key passages of the Confessions where Augustine describes the dialectics of vulnerability and autonomy in terms of “encounters”: encounters between the self and the other, the interior and the exterior, the private and the social. I argue that for Augustine, the recognition of vulnerability as a human condition is not a hinderance but a requirement for autonomy. As such vulnerability is constitutive of the human capacity for moral agency. In closing I offer some practical ways to overcome the autonomy/vulnerability dichotomy which, as I argue, is an unwarranted normative stance operative in bioethics discourse as “power politics” (in the Foucaltian sense) under the disguise of normative invulnerability. Indeed, maybe being vulnerable is not so undesirable after all because to be vulnerable is to be a human moral agent. Perhaps recognizing autonomy as vulnerability offers a path towards respecting vulnerable human life.
7F : Medical Aid in Dying Show Details Symphonie 3B
Medical Aid in Dying
“Is this a Capable Request for Medical Assistance in Dying?”: An Ethical Analysis of the Literature describing Capacity Assessment Tools within Mental Health Practice
Since legalization in Canada in June 2016, standards of practice have been evolving around eligibility assessments of patients who request for Medical Assistance in Dying (MAID). While patients with a primary diagnosis of mental health illness cannot request MAID at present, those with an underlying or concurrent mental health illness are not necessarily precluded from doing so. The presence of an underlying mental health illness adds an additional layer of complexity to capacity assessments. Cursory searches within the literature and scoping exercises with several clinicians reveal great variability in the capacity assessment process and tools utilized in psychiatric practice. Current capacity assessment tools tend to be prescriptive in the name of protecting vulnerable populations, and no tool exists for the explicit purpose of assessing capacity to request MAID. Further, the notion of vulnerability is inconsistently defined or considered for psychiatric populations. Through on-going work by the inter-disciplinary Joint Centre for Bioethics (JCB) Task Force on MAID, coupled with evolving practice, capacity assessment for MAID requests has emerged as an area requiring more standardization as well as deeper ethical consideration. Accordingly, a scoping of the literature was conducted to (1) better understand the range of capacity assessment tools described within psychiatric populations, (2) explore descriptions of capacity assessments in clinical contexts within mental health practice that may be analogous to MAID, and (3) uncover justifications for unique considerations or additional guiding questions that ought to be highlighted for MAID. Using broad terms to include the research question themes, two databases were searched. Of the 280 records generated and screened based on title and abstract, 30 were included for full-text review. After inclusion of additional articles from snowballing through references, 50 articles were included in total. In the literature, so far, 24 capacity assessment tools have been described, 12 of which were developed for use within psychiatric populations. Articles critically appraising standardized capacity assessment tools present overlapping information on the capacity assessment tools available, definition of capacity utilized, format of assessment, domains of capacity assessed, patient populations tested, measures of validity, and limitations of the tools. In this presentation, key findings of the capacity assessment tools reviewed in the literature will be analyzed for their alignment with the overarching ethical principles of accountability, collaboration, dignity, equity, respect and transparency. The goal is not to suggest a new tool or modify an existing one. Rather, it is to provide ethicists and clinicians the opportunity to share ethical and practical concerns about the robustness of capacity assessments in order to consider how existing processes may be adapted and standardized, particularly in the context of MAID. The evolving landscape of legal and moral acceptability for MAID calls for re-envisioning social norms, and revising clinical instruments to appropriately suit the capacity assessment objectives and context.
Intolerable Imprecision – “vulnerable” and “natural” in Canada’s end-of-life law
The term vulnerable is regularly used to denote some general state of an individual person or class of persons. Very rarely, though, is the term defined, specified, clarified or even elaborated. The term natural is known to be notoriously misleading in food labelling, but its use in medical law and public policy has been strongly advised against by the Nuffield Council on Bioethics. The terms have been invoked in the development and expression of Canada’s law governing assisted dying in a manner that leaves one with a sense of these as binary characteristics – (highly) vulnerable or not, and natural or not. Far from offering any additional safeguards against potential abuse of legal assisted dying, they create a situation in which the law continues to enact certain prohibitions that are overly broad and grossly disproportionate, albeit for a small but diverse number of people. This presentation will consider ‘vulnerable’ as it has been explored by various writers who seek a better understanding of its complexity and possible application in practice. It will also examine the idea of ‘natural’, primarily through the extensive work of the Nuffield Council on Bioethics. The decided impact of these imprecise terms on the legislative framework for assisted dying in Canada will then be considered. Some suggestions for more precision will be discussed. Potential steps to influence the current independent reviews of the legislation will be identified.
|12:00 pm - 2:00 pm|
Lunch, Awards & CBS Annual General Meeting Grand Salon
Lunch, Awards & CBS Annual General Meeting
|2:00 pm - 3:30 pm|
Plenary: Official Opposition critic on End-of-life care Show Details Grand Salon
Hon. Véronique Hivon
Member of the Quebec National Assembly for Joliette, Official Opposition critic on End-of-life care
Plenary: Official Opposition critic on End-of-life care
Hon. Véronique Hivon
Member of the Quebec National Assembly for Joliette,
Official Opposition critic on End-of-life care
Véronique Hivon is the member of the Quebec National Assembly for Joliette since December 8, 2008. She was elected three times under the banner of the Parti Québécois. She holds a bachelor's degree in civil law and a bachelor's degree in common law from McGill University, and a master's degree in social policy analysis from the London School of Economics and Political Science.
She was the instigator and vice-chair of the Special Commission on dying with dignity when she was an opposition member and was responsible for the end-of-life care bill as Minister from September 2012 to April 2014. During the same period, she was appointed Minister Responsible for Social Services and Youth Protection and developed the first Quebec homelessness policy. She also paid special attention to people with autism or intellectual disabilities, as well as increasing funding for community organizations to an unprecedented level.
She currently holds the position of Official Opposition critic for justice, reform of democratic institutions and end-of-life care, and is responsible for the Mauricie region.
|3:30 pm - 4:00 pm|
Afternoon Networking, Poster Viewing and Refreshment Break Grand Salon Foyer
Afternoon Networking, Poster Viewing and Refreshment Break
|4:00 pm - 5:30 pm|
8A : Ethics of Assisted Reproduction Show Details Symphonie 3A
Ethics of Assisted Reproduction
Constructions of Vulnerability in Canadian Fertility Clinics
Skye A. Miner
Canada’s Assisted Human Reproduction Act (AHRA) explicitly prohibits payment for donated gametes used for fertility treatment purposes. This act was created to protect the interests of donors; assuming that restricting compensation to donors would prevent the commodification of human body parts. By mandating altruistic donation, the AHRA also hoped to prevent vulnerable women from being unduly influenced by financial incentives to donate their eggs. This fear of undue influence comes from liberal feminist responses to egg donation, which have focused on the socioeconomic disparities between women who are donating their eggs and the recipients (Baylis and Downey 2014, Nahman 2013). Their concern is with the vulnerabilities of young women who may not fully understand the risks of donation. Those who think that compensation should be allowed argue compensation is not the primary motivation for donation and for many women donation is a positive experience (Pennings et al. 2014, Purewal and vanderakker 2009). While research has been conducted on US egg donors and US fertility patients in need of egg donation (e.g., Almeling 2007), there has been a lack of research about how Canadian’s altruistic market affects egg donation. What is known about the effects of the AHRA on egg donation is that there has been a perceived shortage of egg donors in Canada which has led Canadians to travel across borders to obtain eggs. More recently, the establishment of frozen egg donor banks with imported frozen eggs has meant Canadians no longer leave their homes for egg donation. The process of either traveling to other countries for egg donation or receiving frozen eggs from abroad is what I call transnational egg donation. This movement is a result of incongruent jurisdictional laws with patients traveling to countries with more liberal laws. The ability to compensate out-of-country donors seems to contradict the AHRA; however, transnational egg donation is routinely occurring in Canadian clinics. Additionally, the recent implementation of frozen egg banks stocked with eggs from the US and Spain inside of Canadian borders seems to suggest that this type of transnational egg donation is legally allowed, or at least has not been subject to legal scrutiny. Through in-depth semi-structured interviews with Canadian fertility counselors (n=18) and fertility clinics (n=13), I explore the ways that fertility professionals interpret the AHRA in relationship to egg donation. I find that these professionals interpret the law through a national lens, arguing that compensation cannot be given to Canadian donors or happen on Canadian land. They differentially use language of vulnerability to establish protections for potential Canadian donors while simultaneously seeing their (in)fertility patients as vulnerable. In constructing their patients as in need while simultaneously agreeing with the prohibition of compensation, Canadian fertility professionals overlook how this construction of vulnerability is dependent on the assumption that US donors are donating without vulnerability. Using a transnational feminist framework, I show how the transnational market of eggs is dependent on the exporting of potential vulnerability while simultaneously arguing that laws concerning egg donation must take into consideration international markets.
When do Quebec clinics turn away IVF candidates? A Qualitative Study
Tierry M. Laforce; Vardit Ravitsky
From 2010 to 2015, Quebec offered comprehensive public funding for assisted reproductive technologies (ART), allowing access to any resident woman ‘of reproductive age’ without specifying eligibility criteria. Other jurisdictions have different models ranging from absence of criteria to regulating agencies overseeing ART clinics. While establishing such criteria is an ethically daunting task, users wishing to access ART may be confronted with professionals who reject them based on subjective, and possibly discriminatory, criteria. Exploring what criteria are used in practice, in the absence of regulatory guidance, can shed light on the challenges faced by professionals and the decision-making needs. It can also inform our ethical reflection regarding the normative positions required for establishing guidelines in this sensitive area. This presentation will describe eligibility criteria used by healthcare professionals working in IVF clinics in Quebec, based on qualitative interviews conducted with four physicians and four psychologists working in both public and private clinics. An extensive literature review on the topic allowed grouping criteria into categories under overarching themes, that were then used to analyze interviews. Findings suggests that overall, professionals in Quebec are using similar criteria as professionals in other countries. At the same time, they also referred to criteria not found in the literature, which required the creation of new categories for analysis. Among the criteria used by interviewees, the researchers found that the relationship status was the most popular, followed by the mental health of ART candidates and their age. A major finding was that professionals never consider one isolated criterion to reject candidates, they rather base their decision on a combination of factors. Another important element was the repeated phenomenon of “soft rejection”, i.e. postponing ART until a later date described as a “better time” for candidates who did not seem ready to undergo fertility treatments. Overall, decisions were made by analyzing the context in which candidates were living and in which the prospective child would be raised. The interviews lead to the conclusion that professionals act as gatekeepers for ART and are often forced to make normative decisions (that go beyond a clinical assessment) based on their own personal subjective judgement call. These decisions were not easily taken by participants and they expressed doubts and decisional conflict. This presentation will focus on the criteria used by the interviewed professionals and will engage the audience in a discussion regarding the eligibility criteria currently applied in different parts of the world. The goal is not to propose guidelines or argue for a specific model of ART eligibility, but rather to inform our ethical reflection on this topic and contribute to the conversation surrounding ART in Quebec and elsewhere.
Posthumous Assisted Reproduction for combat soldiers: ethical considerations
Ya'arit Bokek-Cohen and Vardit Ravitsky
Despite the ongoing ethical controversy surrounding Posthumous Assisted Reproduction (PAR), there is a growing acceptance of this reproductive option worldwide, including in Israel. To date, empirical studies on attitudes towards PAR were mostly conducted on healthy civilians, and not on those vulnerable populations that are exposed to increased risk of death and thus more likely to consider this option. Our research fills this gap, through surveys of two populations for whom PAR is not a hypothetical issue: soldiers serving in active duty in the IDF, and parents of IDF combat soldiers. Our findings indicate that soldiers are willing to consider preserving sperm for PAR. When asked to mark scenarios of familial circumstances in which they would be willing to conduct PAR, they most frequently selected "if my parents would ask me to allow them to have a grandchild after I die", followed by "if at the time of my death I do not have any children and my parents do not have any grandchildren". Respondents also attached high importance to the economic status of the prospective PAR mother. Fathers of combat soldiers were more willing to conduct PAR, as compared to mothers, as reflected in their willingness to pay a significantly larger sum of money than mothers for this procedure. The son's will prior to death had a major impact on the inclination of parents of both genders to consider PAR, whereas the number of children parents have, had almost no impact on this tendency. To contextualize these data we will present a socio-cultural analysis of the Israeli approach towards PAR, which is grounded in historical, religious, demographic and sociological factors. The Israeli approach to reproduction is considered unique and has been amply documented as heavily pronatalist when compared to other Western countries. Israeli culture is imbued with Jewish traditional values that center on the family and on genetic parenthood. Beyond being perceived as an obvious personal choice, parenthood is linked in the Israeli collective consciousness to a host of national narratives related to the physical survival of the Jewish people in the shadow of the holocaust and to assist in demographic efforts to maintain a Jewish majority. We will also describe the legal context and the evolution of Israeli regulation and case law towards PAR, from the Attorney General 2003 Guidelines that limited the request for PAR to the deceased’s female partner (excluding the parents of the deceased as possible initiators of PAR), to the emergence of jurisprudence that acknowledges such parental requests. We will further discuss the bio-political context surrounding the activity of the NGO “New Family” that has proposed a legal tool – the Biological WillTM – to regulate the procedure of declaring consent for PAR prior to death. We will conclude by demonstrating how attitudes towards PAR cannot be understood without attention to the cultural context in which they are embedded, which explains why the Israeli approach to PAR is an outlier compared with the rest of the world.
8B : Consent Issues in Pediatric Care and Research Show Details Symphonie 3B
Consent Issues in Pediatric Care and Research
Exception to Consent in Pediatric Resuscitation Research: Exploring the Experiences of Substitute Decision Makers
Melissa J. Parker, Sonya de Laat, Emilio Aguirre, Lisa Schwartz
BACKGROUND: The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS) outlines the requirements for research involving human subjects in Canada. The need for an "exception to consent" is recognized and endorsed in the TCPS for research in individual medical emergencies, however little is known about substitute decision maker (SDM) experiences. We sought to better understand the experiences of parents/guardians with an exception to consent process as implemented in a pilot randomized controlled trial (RCT) involving children with septic shock. RESEARCH QUESTIONS: 1. What is the experience for parents and guardians asked for consent for their child to remain in a study/RCT after the main intervention has taken place? 2. Why do parents/guardians choose to continue or withdraw their child from ongoing participation? 3. What strategies, responses, resources etc. employed by consenters to recruit families did SDMs feel helped them make their decisions? What could have been improved? METHODS: Design: Qualitative research study involving semi-structured interviews. Participants: SDMs for children enrolled into the SQUEEZE pilot trial [NCT01973907]. Qualitative Methods: Interviews with consenting SDMs were conducted in person or by telephone, taped, and professionally transcribed. Participants were encouraged to elaborate, in depth and detail, on their experience of being asked to consent after the fact. In particular, participants were encouraged to describe what went on in the consent process and how they responded. Analysis: Data gathering and analysis were undertaken simultaneously. Qualitative data was coded using NVivo and the investigators collaborated to identify emerging themes. RESULTS: SDMs of 52 unique individuals randomized into the pilot RCT were assessed for eligibility. 15 SDMs consented to participation in the qualitative ethics study and completed the interview. The ethics study sample included both bereaved and non-bereaved SDMs, however SDMs who did not consent for their child's ongoing participation in the RCT are not represented due in part to the high deferred consent rate in the RCT (94%). Preliminary Findings: 1. SDMs recognized the need for use of an exception to consent process for research in medical emergencies; 2. Most SDMs viewed their child's research participation positively, with many making altruistic statements about helping other children in the future; 3. Perceptions regarding the appropriateness of the timing of the consent approach following enrolment into the RCT were variable, with some SDMs stating that it was the "right amount of information at the right time", while others felt that they had been approached too soon. Additional results including emerging themes and qualitative data will be presented at the meeting. DISCUSSION: Substitute decision makers, including bereaved parents/guardians, supported use of an exception to consent process in the SQUEEZE pilot trial. Future areas for research include determining whether our findings are representative of SDM experiences elsewhere in Canada, and to seek out the perspectives of paediatric trial participants. 1. Parker MJ, de Laat S, Schwartz L. Exploring the experiences of substitute decision-makers with an exception to consent in a paediatric resuscitation randomised controlled trial: study protocol for a qualitative research study. BMJ Open. 2016;6:e012931.
Improving the informed consent process in paediatric trauma using an eHealth tool
Jeffrey Klotz, Martin McKneally, Mark Camp
The moments before their child is wheeled from an emergency department into the operating room for emergency surgery are possibly the most stressful of a parent’s life. However, the emergency department is far from an ideal setting for obtaining informed consent. This situation is stressful for parents and surgeons. Parents, who are often experiencing injury to their child for the first time, are overwhelmed by worry. They are expected to process a great deal of information provided by the surgeon about the risks, benefits, and alternatives to emergency surgery and make an informed decision. Surgeons are expected to provide important information regarding the child’s condition under significant time pressure, while dealing with their own concerns about the upcoming surgery. This may make it difficult for them to deliver the information effectively. Traditionally, information is provided only verbally, and recall by parents of the information in these situations is very poor. We believe this information can be provided and received more effectively with the assistance of an eHealth tool that is immediately understandable by parents and their children. Parents would receive information in a simple onscreen format that will allow them to clarify information with their child’s surgeon. They could revisit the eHealth tool during and after surgery to clarify any information that might have been missed when their stress levels were higher. During the informed consent conversation, surgeons will be able to spend valuable time answering clarifying questions and providing reassurance, rather than providing a laundry list of risks, benefits, and alternatives to surgery. Surgeons value this reassuring discourse as a means for developing trust. We are developing this tool for consent conversations preceding surgical treatment of elbow fractures, a common pediatric injury. We will report on qualitative interviews and quantitative questionnaires with parents and surgeons to assess its effectiveness for providing a baseline quality standard for the preoperative communication of information to families and patients. This pilot project, if successful, will be used to guide further applications of the technology for other injuries and treatments.
Adolescents and Young Adults' Relational Autonomy and Decision Making about Cancer Clinical Trials
Seline Tam, Victoria Forcina, Kate Wang, Laura Mitchell, Abha Gupta, Jeremy Lewin, Jennifer A.H. Bell
Purpose: Adolescent and young adults (AYA) with cancer have the lowest cancer clinical trials (CT) enrollment of any age demographic. However, little data exists on the factors and contexts that influence their decision making about CT participation. The aim of this research was to explore AYA attitudes, perceptions and other factors that influence AYA CT decision-making to inform specific strategies for supporting their relational autonomy within this decisional context. Methods: Interpretive descriptive methodology guided individual semi-structured interviews with 21 AYA, (aged 15-39), with varying exposure to CT and across predominant cancer types that affect this age group (sarcoma, testis, breast, leukemia, lymphoma). Participants were asked questions regarding their CT knowledge, factors influencing their CT decisions, and attitudes towards CT participation. Interviews were transcribed and interpretive thematic analysis with an ethics lens was used to identify major themes. Results: Three overarching themes were identified as unique to AYA decision-making and influencing their relational autonomy: (1) family, friends and peer group opinion, (2) impact of CT on daily life (school, friendships) and future quality of life (starting a family), and (3) illness severity and cognitive/psychological readiness to accept CT information. Most AYA consider the opinions of family/friends but make the final CT decision on their own, based on what they believe is best for them. AYA also consider the impact of CT on daily and future life; however, if their illness is advanced, most are willing to try CT whilst a few desire to prioritize quality of life. Finally, many make decisions about CT enrollment during a time of new diagnosis and treatment complexity, and within a context of cognitive development and self-identity maturation. These factors may influence their ability to appreciate CT information, potentially undermining their relational autonomy and informed consent to CT. Conclusion: A variety of overarching themes were identified in this study with regards to attitudes and perceptions that influence AYA CT decision-making. Specific strategies to enhance AYA relational autonomy include providing opportunity for patients to involve family in decision-making. Helping AYA appreciate short- and long-term implications of CT participation will support informed CT decisions. Finally, exploring social networking/online forums and general education about CT that AYA can access when they are ready to receive information may increase their knowledge about CT and potentially enhance their CT participation.
8C : Patient engagement Show Details Grand Salon
Exploring the ethical issues associated with patient engagement in health care
Joé T. Martineau, PhD, Eric Racine, PhD
Patient engagement initiatives are increasingly being implemented in Canadian health care systems and interest in these initiatives is expected to increase in the coming years. Indeed, patient engagement has been identified as a priority by the federal government through the Canadian Institutes of Health Research (CIHR) and, more recently, by Accreditation Canada. Health organizations and institutions can engage with patients at multiple levels, such as by integrating patients in research, in education, in direct care, in quality improvement processes, in policy making, or in their governance (Carman, 2015; Karazivan et al., 2015). Although these initiatives are gaining more attention in practice and in research, little is known about the ethical issues associated with partnering and working with patients to improve different aspects of health care. This presentation thus aims to highlight and discuss the most prominent ethical issues associated with partnering with patients in health care. These issues will be discussed both at a general level, as well as more specifically in health research, quality improvement, and in the governance of health organizations. In this session, we will first present and discuss the outcomes of these initiatives, in light of the little research there is on the topic and on documented experiences in Quebec, and then balance them with the ethical issues they bring. To discuss these issues, we will also pull from our own experience as patient-as-partner in quality improvement and research (first author) and as qualitative researcher who had developed collaborative research with patients and clinicians (second author). Issues such as patient instrumentation, moral intentions, vulnerability of patients, legitimacy, representativeness, pertinence, power and identity shifts, asymmetry of information, confidentiality and compensation will be discussed. This is not to discourage teams to work with and engage patients to improve health care. On the contrary, we recognize the numerous advantages of this approach. As such, our objective is to stress the issues associated with these initiatives so that key actors are aware of them and can work on alleviating them for patients, health care managers and professionals. To help further reflection on this topic, we will suggest different solutions to these issues and conclude with an urgent call for more research on this topic. References: Carman, K. L., et al. (2013). Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs 32(2): 223-231. Karazivan, P., et al. (2015). The patient-as-partner approach in health care: a conceptual framework for a necessary transition. Acad Med 90(4): 437-441.
Early Career Researchers’ Perceptions of and Recommendations Regarding the Ethical Issues Inherent to Patient Engagement in Research
Stanislav Birko, Jean-Christophe Bélisle Pipon, Geneviève Rouleau
Context. While patient-oriented research (POR) is an emerging approach, it is increasingly discussed in the literature and encouraged by funding agencies. POR represents a significant paradigm shift, because it allows viewing research as a partnership based on common goals, thus going beyond the paternalistic vision of patients solely as subjects, which lack expertise able to guide research. Arising from questioning the underlying principles and research methods of evidence-based approaches, which give epistemic priority to randomized controlled clinical trials to the detriment of “real world evidence”, POR seeks to include and make the most of patients’ experiential knowledge, to ensure an ethical relationship with patients engaged in research. Hypothesis and Objective. Establishing in an ethical manner, such a culture of research may lead to a positive impact on Canadians’ health. However, with a view to making its implementation as realistic and accessible as possible, it is crucial that early career researchers be involved early on. Representing a major force in research, junior researchers are important vectors for both the advancement of knowledge and the application of innovative approaches in research. However, very little has been accomplished in regards to creating spaces for next generations of researchers to discuss the benefits, challenges and feasibility of actively engaging patients in their research. Our study aimed to better understand researchers’ perspectives and to compel them to think normatively so as to propose recommendations for optimizing POR’s social utility and ethically responsible implementation. Methods. A three-round Delphi study was conducted with a heterogeneous panel (n=18) of POR researchers in order to evaluate their perceptions of what they identified as being important to future responsible development of POR, including: defining POR, the patient’s and researcher’s roles and expected contributions, ethical issues, levels of preparedness for conducting POR (skills, abilities, resources), POR’s feasibility and social utility. An analysis of consensus and prominent disagreements among the participants allowed to evaluate the extent of agreement among the POR researcher community in Québec, identify the salient recommendations and suggestions, as well as areas requiring further research. Results. The results of this study yield a number of targeted recommendations (aimed at universities, funders as well as the researcher communities) whose dual purpose is: maximizing the contribution researchers have on POR’s development and implementation; and, creating conditions leading to better engagement of patients’ experiential knowledge. The panel identified the top six ethical questions most pertinent to POR implementation: emergence of professional patients; tokenism; patient remuneration; exploitation of vulnerable persons; sharing of power within the research team; just appreciation of patients’ expertise. Consensus was observed regarding the expected roles and contributions of patients and other researchers, and the types of contribution that to be acknowledged. Contrasts were also drawn between POR’s ideal level of public impact and the level of public impact researchers expect their near-future projects to have. This study thus represents an essential contribution to understanding the value of researcher involvement in the development of POR as well as to outlining what optimal engagement of patients in research consists of.
Ethical principles integrated in Health Promotion through student’s projects with vulnerable populations.
Françoise Filion, Catherine-Anne Miller, Diana Gausden
Introduction: Core ethical principles, such as beneficence, non-maleficence, and respect for autonomy, fairness, truthfulness and justice are imbedded in health promotion practice with vulnerable populations. In the final year of the bachelor of nursing program focused on community health nursing (14 credits), nursing students build a health promotion project in close partnership with Community Benefit Organizations (CBO) caring for underserved populations. This clinical course integrates the Population Health Promotion Model and provides the students with a rich experience of engaging nursing ethics in an unregulated environment with the collaboration of University faculty and the CBO staff. This collaboration enables the creation of sustainable primary prevention projects on health needs on behalf of the organization’s population. Goal: Explain how core ethical principles are imbedded in the student’s projects, explain the theoretical framework encompassing this clinical course and provide an overview of the 43 health promotion projects realized in the 2016-17 academic year. Methods: The projects apply the PHPM (Population Health Promotion Model) as their principal framework. To create the projects, teams of 5-7 students collaborate with one of 21 community organizations that care for fragile populations: homeless, substance users, underprivileged individuals and families. Each team identifies a priority health need and creates a project that can be accomplished and evaluated within an 8-week time period. All the projects are ethically grounded but never explicitly clarify how core ethical principles are applied. It becomes important to review the projects and make the core ethical principles unambiguous. Results: All the 43 health promotion projects described clearly the six core ethical principles, for example a project supporting substance users developing their curriculum vitae and improving their interview skills reflects fairness and justice or a project providing relaxation techniques modules to women in shelters reveals respect for autonomy. Moreover, many projects surpassed their outcome objectives, mostly because of the establishment of professional relationships and the application of capacity building approaches with the populations. Also, on completion of the projects, a comprehensive toolkit is produced for the community organizations to support sustainable health promotion initiatives. Conclusion: This clinical course provides several opportunities for nursing students, such as applying core ethical principles in their projects, learning a Population Health Approach to reduce health inequities experienced by vulnerable populations, and providing undergraduate nursing students with a privileged and unregulated environment where they can learn, care, advocate, build capacity and support under-served populations. Finally, they are offered a true experience with social determinants of health where they can apply a project’s methodology and a community health nursing process in the planning, application and evaluation of a community project.
8D : Ethics of Data Sharing Show Details Symphonie 4
Ethics of Data Sharing
Link. Share. Cure. A systematic mapping review of ethical, legal and social considerations for sharing genomic and health-related data involving children
Vasiliki Rahimzadeh, Gillian Bartlett, Bartha Maria Knoppers
Background: The ability to make scientifically sound links between the human genome and childhood disease rests on sharing both genomic and health-related data. Genomic data sharing not only bridges discovery research and care, but is also the vehicle for bench-to-bedside translation. This is particularly true for children whose conditions may be exceedingly rare. By the sharing of pediatric genomic and health data, we mean the sharing of comprehensive or limited phenotypic and genotypic sequencing data. Linking both types of data yield the most clinically useful information for the individual as well as future patients. Yet it is precisely this linkage, and the theoretical risk of privacy loss it poses, which accentuates ethical legal concerns. Despite impressive sophistication in data management and analytic capacities, there has been little policy attention paid to the ethical, legal and social implications (ELSI) of data sharing in pediatric populations, specifically. Methods: This systematic mapping review draws from both the empirical and grey literature on ELSI considerations for pediatric data sharing, and was guided by the following research question: What are the ethical, legal and social considerations for sharing linked genotypic and phenotypic data involving children? Database searches in MedLine, Web of Science, CINAHL, Google Scholar, SCOPUS and select ELSI journals e.g. American Journal of Bioethics, Hastings Center Report etc. were conducted using the search terms: “data sharing” AND “ethic-” AND “Genomic-” AND “phenotyp” AND “genotype” AND “Child-” OR “Minor” OR “Youth.” Qualitative, quantitative and mixed methods studies from the empirical literature were reviewed and appraised for quality using the MMAT tool. Results: 75 articles and 8 international data sharing policies were retained. ELSI considerations for pediatric data sharing were organized into four thematic categories: i) children’s involvement, ii) parental involvement, iii) individual and population risk-benefit analysis, and iv) data protection and access. Conclusion: This systematic mapping review fills a knowledge gap at the nexus of pediatrics, genomics and data governance. It synthesizes ELSI scholarship and best practices in the area of genomic data sharing involving this situationally vulnerable group. Not unlike children’s participation in research, children’s data warrant special, yet proportionate ethical protections. Such data should be shared responsibly if children are to remain at the forefront of clinical innovation and optimal care in the post genomic era.
Including Incapable Adults in International Dementia Research: Broad Consent, Proxy Consent, and Advance Directives?
Adrian Thorogood, Constance Deschênes St-Pierre, David McLauchlan, Bartha Maria Knoppers
In the coming years, a deluge of genetic and health related data will be generated about patients with dementia. International sharing of this data accelerates research into the causes of dementia, as well as prevention and treatment. Most biobanking and data sharing initiatives, however, rely heavily on consent. This raises a challenge for dementia research where patients have lost or risk losing legal capacity. How can we ensure incapable adults are not left out of participating in and benefitting from research, but also ensure they are not exploited? We compare the laws and guidelines governing capacity, research and personal data protection across eight countries to inform governance of research involving incapable adults. Under existing regulatory frameworks, three complementary strategies are available. First, researchers can seek broad consent from individuals before they lose capacity. This consent can also specify that samples and data will continue to be shared and used after a loss of capacity. Broad consent must be accompanied by ongoing ethical governance, but even then is not accepted in all countries and institutions. Second, the regulatory frameworks in many countries enable proxy decision makers to exercise the rights of incapable adults relating to property, personal care and research participation. A proxy is legally required to respect the incapable adult’s best interests, including his or her previously expressed wishes, values and beliefs; well-being; and inclusion in consent to the extent possible. Processes to capture individual’s wishes about research before a loss of capacity, to identify a suitable proxy, and to safeguard privacy all support proxy consent to biobanking and data sharing. Conflicts can arise however, between the person’s previous wishes and past wishes, and the proxy’s decision about (ongoing) participation. Third, individuals might use advance directives – a legal document with statutory authority used by a person to plan his or her future after a loss of capacity – to proscribe or prohibit how their samples and data are accessed and used. Advance directives can provide a powerful support for precedent autonomy, but they are limited by uncertainty over future research uses, and face challenges of implementation. An overarching challenge is that these strategies are provided for by a patchwork of national laws and guidelines that confuses researchers, ethics bodies, and family members. The Global Alliance for Genomics and Health, an international coalition of volunteers from academia and industry promoting data sharing for research, has established an Ageing and Dementia Task Team to address these consent issues. The Task Team aims to clarify applicable regulatory frameworks and recommend governance processes for ethical shared decision making, ensuring the full participation of incapable adults in research and accelerating progress in dementia research.
Vulnerable populations and electronic consent: unlocking mHealth research in Canada
Ma’n H. Zawati, Amy Pack and Yixiao Zheng
Wearable devices and mobile health (mHealth) research applications are becoming increasingly popular among both consumers and researchers as they improve the process of collecting and analyzing personal health data. The use of self-tracking data collected by mHealth research applications allows researchers to strategically leverage greater amounts of consumer data for health research purposes. Collection of such data, in turn, raises a number of ethical and legal issues – most notably concerning electronic consent. More specifically, the recruitment of vulnerable populations (minors and adults lacking capacity) poses a particular risk when remote consent is obtained. Specific measures and conditions imposed by law (article 21 CCQ) and suggested by policy (TCPS2 chapter 3, section C) must be respected when consenting vulnerable participants. Considering that the mobile application medium removes the researcher’s ability to confirm competency and understanding of consent face-to-face, ensuring free and enlightened consent becomes difficult. Although such challenges related to mHealth consent are often discussed in conjunction with American legal standards, there is minimal literature relating to these issues in Canada. This may be due to the absence of mHealth research applications recruiting in Canada. However, with mhealth becoming a multi-billion dollar industry, this reality is sure to rapidly change. In light of this, how would electronic consent through mHealth research applications fit within the Canadian normative setting? A legal review of the matter is imperative as consenting through mobile applications becomes more prevalent. The current Canadian normative framework surrounding electronic consent will be assessed by surveying and categorizing Canadian federal and provincial normative documents pertaining to electronic consent and participation of vulnerable populations in research. We then evaluate whether the consent practices applied by American mHealth research applications satisfy the Canadian framework previously established. This analysis will lead to a better understanding of the current Canadian normative landscape as well as the issues raised by a mHealth research application’s consent process.
8E : Culture, Values and the Medical Paradigm Show Details Symphonie 1
Culture, Values and the Medical Paradigm
Teaching residents to build common grounds in the physician-patient relationship: the roles of narratives, cultures and values.
Nathalie Gaucher, Karine Boucher, Antoine Payot
Clinicians can be guided to discover and identify their own personal values, which influence their preferences and decisions. Narrative approaches to medical education have been promoted as essential in developing self-reflexive practices and in helping physicians gain insight into their own understandings of complex healthcare issues. The theoretical foundations of an original narrative pedagogical approach to teaching the concepts of cultures and values to medical residents, within a clinical ethics curriculum aimed at promoting self-reflexive practices, will be presented. Learning about the concept of culture has garnered much attention in contemporary medical education, but many educational models promoting “cultural competency” are based on ancient, static, and reductionist definitions of culture. Recently, anthropologists have suggested that an individual’s culture is continuously constructed through various influences (migration, education, healthcare experiences). Within the clinical setting, it seems a difficult task for clinicians to fully comprehend each individual patient’s culture; culture is often seen as a source of differences and conflicts between clinicians and patients. However, individuals from very different cultural backgrounds and histories may share mutual or reconcilable values. Cultural factors inevitably influence individual, community and societal values, which, in turn, are fundamental in peoples’ understandings of their health and illness. In this narrative educational approach, emphasis is placed on developing a better understanding of values, to foster residents’ capacities to identify their personal values – and their patients’ – in order to promote the development of common grounds on which to build the physician-patient relationship.
Jehovah's Witness Treatment Refusals and the Shifting Limits of Multicultural Accommodation
Carey DeMichelis, MA
The refusal of blood products by Jehovah’s Witness patients has provoked court proceedings, (A.C. v. Manitoba 2009), social science research (Rajtar 2013; Winkler 2005), and contemporary fiction (McEwan 2014), all of which emphasizes a seemingly intractable conflict between religious and secular ways of being. This article takes a different tack, focusing instead on the space that Witness patients have carved out for their accommodation in a major pediatric research hospital. Using discourse analysis and interview data, I map the way moralizing discourses surrounding Witness families has shifted over the past 70 years alongside advancements in bloodless medicine. I argue that Witnesses have helped to enable their present accommodation by marshaling particular forms of economic and social capital, and consider whether their success might be attainable by other treatment-resisting patient groups. Thus, this article explores the shifting limits of multicultural accommodation and the conditions that make understanding, collaboration, and compromise possible.
Respect and Vulnerability
Why do we need respect in bioethics? The principle of respect for autonomy is sometimes said to be important because it protects vulnerable and dependent patients from exploitation by health care professionals. However, this concept leaves out the most vulnerable patients as respect for autonomy does not apply to those who are not sufficiently autonomous and cannot be rendered autonomous, according to Beauchamp and Childress (2013, 108). I argue that respect is particularly important in medical contexts because medicine, medical knowledge, nursing, the demands of modern bureaucratic medical institutions, and the experience of illness itself all have inherently objectifying aspects. The reason we need an account of respect in bioethics is to counter this objectification. Martha Nussbaum identifies seven notions involved in ‘objectification:’ (1) instrumentality, (2) denial of autonomy, (3) inertness, (4) fungibility, (5) violability, (6) ownership, and (7) denial of subjectivity (1995, 257). To these seven Rae Langton adds three more: (8) reduction to the body, (9) reduction to appearance, and (10) silencing (2005, 246-247). Bioethics has focused on the first of Nussbaum’s list in research contexts and the second in both clinical and research contexts, but we have neglected the other forms of objectification that might be present in medical contexts. I explore these other forms of objectification in order to describe a concept of respect that can apply to even the most vulnerable and non-autonomous patients. I claim that while the first two items on Nussbaum’s list are certainly concerning forms of objectification in medical contexts, they are the two that are more likely to negatively affect the least vulnerable groups of patients. In addition to these two items, medicine, medical research, and the experience of illness can involve inertness when the body is considered as an object of treatment; fungibility when a patient is viewed as an interchangeable instance of a disease kind; violability when the bodies boundaries are considered permeable as part of treatment; inattention to subjectivity when the focus is on the object-body rather than the lived body (Carel 2014, Toombs 1995); a reduction to the body when the object body becomes the focus of treatment; and silencing when a patient’s concerns are not taken seriously or cannot be heard because of the imbalance in expertise. These other forms of objectification affect both vulnerable and powerful patients and so deserve the attention of bioethicists. Further, some of these forms of objectification (in particular fungibility and reduction to the body) seem like an ineliminable, and even desirable, part of medical treatment and medical research. I do not argue that medical objectification is wrong in itself; instead, I follow Nussbaum in her claim that these forms of objectification are not problematic when they occur in the context of respect for humanity. For this reason, as a means of ensuring this climate, I claim that bioethics requires a concept of respect that applies to the most vulnerable, non-autonomous patients. Beauchamp, Tom and James Childress. 2013. Principles of Biomedical Ethics. Seventh edition. New York: Oxford University Press. Carel, Havi. 2014. “The Philosophical Role of Illness,” Metaphilosophy. 45(1): 20-40. Nussbaum, Martha. 1995. “Objectification,” Philosophy and Public Affairs. 24(4); 249-291. Toombs, Kay. 1995. “The Lived Experience of Disability,” Human Studies. 18: 9-23.
8F : Selfhood and Decision-Making Show Details Symphonie 2
Selfhood and Decision-Making
Unwanted Sexual Interest: Is Euthanasia an Option?
Timothy F. Murphy
Since 2002, Belgium has not prosecuted clinicians who carry out euthanasia under certain conditions. In general, adults seeking euthanasia must be legally competent and suffer from constant and unbearable suffering; this suffering does not need to be rooted in a terminal illness, but it must be intractable and result from a serious or incurable disorder. These standards are open to a certain degree of interpretation, and some people have come forward seeking to be euthanized because of their unwanted sexual interests. In 2014, a prisoner said treatment for his violent sexual impulses was not available in prison; he therefore sought euthanasia as a solution. In 2015, a 39-year-old man came forward to seek euthanasia because of his sexual interest in other males, including adolescents. In a BBC interview, this man described himself in these terms: lonely, scared all the time, hugely shy, untrusting, withdrawn, and preoccupied by death since his earliest memories. Death would end, therefore, not only his unwanted sexual interests but also a cluster of other difficulties. In this presentation, I examine whether a request like this could in principle satisfy the conditions for legal euthanasia as a matter of Belgian law. Some people do, after all, experience suffering from unwanted sexual interests because those interests conflict with their sexual values and idealized images of themselves. The American Psychiatric Association allows clinicians to diagnose such persons as suffering from ‘sexual orientation distress.’ Even so, people with unwanted homosexual interests would not ordinarily qualify for euthanasia under the terms of Belgian law if we take seriously the legal requirement that the suffering in question be rooted in “a serious and incurable disorder caused by illness or accident.” Moreover, it is unclear that the gap between people’s actual sexual interests and their sexual values cannot be closed, thereby alleviating distress and/or suffering. The experience of some degree of psychological dissonance is, let’s not forget, a characteristic feature in the development of many gay men and lesbians, especially during adolescence, but one that resolves for most over time. Yet it is not entirely certain that all Belgian clinicians would reject a request for euthanasia on the grounds of unwanted sexual interests. In some instances, they seem to have interpreted unhappiness as authorization for euthanasia. Clinicians have, for example, euthanized twin brothers who were going blind as well as a transgender man who was devastated by the outcome of body modifications he took to express a male identity. Some people with unwanted sexual interests can also be deeply unhappy about their lives, but this distress may be treated without trying to undo underlying sexual interests, by helping people bring their sexual values into line with their sexual interests. Moreover, people looking for euthanasia may be mistaken in attributing their unhappiness to unwanted sexual interests; it might be the effect of an underlying disorder or psychological conflict. In the name of protecting vulnerable sexual minorities, any requests for euthanasia because of unwanted sexual interests should be treated skeptically on legal and moral grounds.
Changing Selves: Decision Making during Life-Limiting Illness and at the End-of-Life
Concerns about the struggles of end-of-life decision making or decision making the case of life limiting illness loom large in biomedical ethics. Cases in which the content of an individual’s end-of-life decision was challenged, either by the state, the individual’s family or the individual herself, have been widely covered in the media. Some scholars have argued that an individual’s end-of-life care decisions require various provisions to protect them from interference from outside sources (Singer 1999, Solomon 1993). Others have suggested that decisions of this nature need to take into account the concerns of more stakeholders (e.g. family, friends) in addition to the individual in question, advocating a social model of decision-making (White 2007). Others have recorded patterns of hospice use which indicate that often individuals change their minds about end-of-life care arrangements. (Pathak 2014). However, none of these works address presuppositions about both the status of the self that is making these decisions, and the particularly difficult circumstances under which life-limiting illness and end-of life decision-making takes place. As a result, it is not clear what reasonable epistemic expectations we can have for those making decisions in these difficult circumstances. Without an account of selfhood that makes sense of what we know about end-of-life circumstances and reasonable constraints on what we can know about the consequences of our actions, we risk ignoring the complex patterns of choice in these circumstances as irrational or capricious—ultimately misunderstanding what is required to make these decisions at all. Using resources from phenomenology and the metaphysics of transformative experience, I argue that it is unlikely that the self remains (or perhaps never was) consistent over time, especially through time periods that involve a transformative event such being diagnosed with a life-limiting illness and/or entering palliative care. In the framework of transformative experiences, this brings the added insight that the self that deals with the consequences of the transformative experience is, to some degree, not the same self that made decisions in preparation for that transformative experience. Because of this, under certain circumstances it is not possible to give rational reasons for decisions about and preparations for a major life-event, such as entering an end-of-life care facility. The self will have changed so much that these reasons are likely not persuasive (Paul 2015). Insights from the phenomenology of illness support this argument by revealing changes in the structure of existence for those who are ill, in a way which suggests that illness and end-of-life preparations should count as instances of transformative experience (Carel 2008).
Happiness Above Consent: Complexities of Sex and Persons with Dementia
In April 2015, 78-year-old Henry Rayhons was charged with sexual abuse after having sex with his wife in a nursing home. Although he and his wife shared a loving relationship, the staff did not believe that she was capable of consenting to sex because of her Alzheimer's (Belluck, 2015). This conviction sparked significant controversy, highlighting the various complexities of sex for people with dementia. Who can consent and who cannot? Is it ethically appropriate to have sex with people if they cannot consent? Who is responsible for determining whether and when it is appropriate? This presentation aims to consider these complex questions at a time of increasing importance, specifically since more than 74.7 million people are expected to be diagnosed with dementia by the year 2030 worldwide (Alzheimer's Disease International, 2016). As a way of responding to these challenges, this presentation will consider implementing a framework of prioritizing happiness and pleasure above consent. Under this framework, sexual acts would be considered in regard to the amount of happiness that they provide instead of whether a person can consent. So, if someone with dementia desires to engage in sexual acts because these acts contribute to their happiness, then it would be appropriate for the person to pursue these activities even if they cannot meaningfully consent. In order to apply this theoretical framework of prioritizing happiness, I will consider using a model of assent. Assent is a relatively new concept in healthcare that is mostly applied to pediatric populations. Assent is defined as a person's active willingness or affirmative agreement to pursue a particular decision, specifically when they cannot provide informed consent (Nelson & Reynolds, 2003; Overton et al, 2013). If the concept of assent is extended into the sexual domain then sexual interactions would be regarded as appropriate insofar as people affirmatively agree to participate, where the reason they agree is because it contributes to their happiness. If this framework is applied to people with dementia then it is plausible that more sexual interactions would be seen as appropriate since one of the primary challenges that is recognized when people with dementia engage in sex is that they may be unable to consent. However, if sexual assent is used as a framework for people with dementia then it would be acceptable for people, such as Henry Rayhons's wife, to engage in sexual activities if these acts make them happy. There are some challenges that may result from prioritizing happiness by using a model of assent. One concern is that it may be difficult to effectively determine when one is appropriately assenting since no standardized guidelines exist about how to assess it (Joffe, 2003). A second concern is that people with dementia will probably have previous wishes and values that may be relevant to evaluating present sexual acts. This presentation will consider some of the benefits and limitations of prioritizing happiness by using a model of assent in response to some of the complexities of sex for people with dementia.
|5:30 pm - 6:00 pm|
Closing Remarks and Conference Wrap-Up Grand Salon
Closing Remarks and Conference Wrap-Up