Volume 4
2015
ISSN 1923-2799
The Dalhousie Dentistry Story: A Case for Proportionality,
Professionalism, and the Promotion of Moral Character
LATRIBUNEDE L’
ÉDITEUR/
EDITOR’
SSOAPBOXCécile M. Bensimon1,2
Reçu/Received: 22 Jan 2015 Publié/Published: 27 Jan 2015
2015 CM Bensimon, Creative Commons Attribution 4.0 International License
Mots clés Keywords
Dalhousie, dentisterie, sexisme, harcèlement, inconduite, proportionnalité, professionnalisme, caractère moral
Dalhousie, dentistry, sexism, harassment, misconduct, proportionality, professionalism, moral character
Affiliations des auteurs / Author Affiliations
1 Editor, BioéthiqueOnline
2 Faculty of Dentistry, University of Toronto, Toronto, Canada
Correspondance / Correspondence
Cécile M. Bensimon, cecile.m.bensimon@gmail.com
Remerciements Acknowledgements
Dr. Carlos Quiňonez Dr. Carlos Quiňonez
Conflit d’intérêts Conflicts of Interest
Aucun déclaré None to declare
Exonération Disclaimer
Les opinions exprimées ici sont celles de l’auteur et ne reflètent pas nécessairement celles de la revue.
The views expressed here are the author’s and do not necessarily reflect those of the journal.
The well-publicised and much-discussed crisis at the Dalhousie Faculty of Dentistry has gripped the dental profession in Canada – and rightly so.
The fate of the senior male students at the heart of the crisis – fourth-year students one semester short of becoming professional dentists, with all the profession’s obligations and privileges – has been the subject of ferocious debate. What they have posted on social media is unquestionably reprehensible and indefensible. (“Who would you hate fuck”, they quipped about their own female colleagues, while casually considering which anaesthetic to use to sedate women to submit to sex). Indeed, they seemed impervious to the increasing conversation, perhaps even a semblance of a collective consciousness, about sexual violence against women that was (re)ignited on the heels of the Jian Ghomeshi scandal. And – more fundamentally – that the profession of dentistry presupposes a commitment to professional norms of conduct and public expectations, appears to have been completely lost on them. Following a domino of events, they have been suspended from clinical activities and classes, while the University proceeds with a formal review of the incident and a controversial process of restorative justice (a face-to-face mea culpa with the victims).
What is an appropriate response to this? Why does it require a response? Why has it galvanised such a spectacular stand against the male students’ right to freedom of speech in favour of women’s right to live free from sexual violence? And, most crucially, what can we learn from it? Even if none of the 13 men had any intention of enacting their disturbing fantasies, what they said matters. Words matter. Behind words, violent words, are ideas that underpin deep-seated beliefs about and form the fabric of the society we live in. What these men did – to engage in what they surely thought was benign bantering on Facebook – categorically requires consequences. Proportional consequences.
CM Bensimon BioéthiqueOnline 2015, 4/1 (http://bioethiqueonline.ca/4/1)
The principle of proportionality is invoked in many contexts: in public health (whether the benefits of an intervention outweigh the infringed-upon morally-relevant considerations, i.e., rights); in research (where any potential harm to a participant should not be disproportionate to the potential benefits for society); and as a legal principle (where it aims to measure the appropriate relationship between the ends and the means of an action). While there is no universal definition of proportionality, the basic meaning, in essence, is balance, equilibrium; the balance between harm and remedy, between benefits and burdens.
The expulsion of the 13 Dalhousie male students, as so many have forcefully advocated, including in a 50,000-strong petition, would not be, by all reasonable accounts, a proportional response or in any way constructive. Thirteen dental students made a mistake, a damning mistake. Such a gross error in judgement requires remedial action and education, not expulsion. Every self-regulated profession has thorough disciplinary processes that engage offending practitioners in the process of redress and rehabilitation. For example, how many disciplinary proceedings and citations are dentists granted before having their license revoked? Expelling these students, essentially doing away with them, does not address the root of the problem, nor does it teach much to the students themselves. “To make the punishment fit the crime,” as some have suggested [1] – so let’s be clear about who’s and what crime it is. This did not occur in a vacuum, but rather in a context of social complicity and society’s unbridled misogyny, and inadequate education about what it means to be a professional.
The roots of the Dalhousie crisis run deeper than the students’ behaviour. It has laid bare – or, as an editorialist said, “the sheet has been pulled back on” [2] – the deeply-rooted misogynistic attitudes that still persist at the heart of society today. As one editorialist aptly summarised: “We have seen rape chants erupt on campuses from UBC to Saint Mary’s; we’ve noted the denigrating tweets and rape threats against women on social media; we’ve exposed the long-running reign of terror against women by Jian Ghomeshi; we’ve heard men cat-calling and abusing women on the floor of the House of Commons; we’ve had the tragic case of Rehtaeh Parsons” [3]. And there’s more. We have only recently begun challenging sexism in video games and the gaming industry (for which some women have received rape and death threats). Violent and misogynistic lyrics have become normalised in the mainstream music industry. And women recoil at the idea of having to formally report sexual harassment or sexual violence without mechanisms guaranteeing anonymity because they know, we all know, that the repercussions are often greater than not reporting.
Closer to home, it has been reported that informal complaints had already been lodged on behalf of women who experienced harassment and what they considered to be preferential treatment of male students at the Dalhousie Faculty of Dentistry [4]; the same Faculty were female students reported that a male professor showed a video featuring Sports Illustrated swimsuit models to “wake up the men in the class” [5] (Seriously?). What is more, a few days after the Dalhousie Class of DDS 2015 Gentlemen’s group was outed, news surfaced that the Manitoba Faculty of Dentistry had quietly dealt with similar inappropriate misogynistic conduct after a female graduate dental student filed a formal complaint and hired a lawyer [6].
The Dalhousie crisis may have exposed deep divisions in what a former adjunct professor at UBC’s Faculties of Law and Dentistry called a “far larger boys’ club problem” in the seemingly “white male bastion” of the leadership of the Canadian dental profession and dental education [7]. This is an interesting observation in light of the increasing proportion of women in dentistry since the 1970’s, pointing to what has been observed as “the feminization of dentistry” [8] and the potential effects this shift is having on the profession, the (re)shaping of its values, and the nature of the dentist-patient relationship [9]. All of this presents circumstances that are propitious for considering issues of professionalism and ethics. As an editorialist observed, this is an opportunity to turn “an ugly moment” into a “teachable one.” [10]. Yes, it is. The Dalhousie crisis and the “changing face of dentistry” [11] positively raise deeply-important questions about what it means to be a professional, what constitutes adequate professional education, and why moral character is, or ought to be, a professional credential.
Perhaps the most interesting aspect that has come out of the Dalhousie story are the provincial regulators who report they will take additional steps to ensure that dental graduates from the Dalhousie Class of DDS 2015 are of “good character” [12]. This raises questions ripe for analysis and action. Why are they pointing to character? Does the profession of dentistry have substantive character requirements? On what basis ought we assess character? Does prior conduct have predictive power?
Beginning a substantive conversation about moral character and whether, or why, it ought to be a professional credential is very promising. It is a concept that gets to the heart of professionalism. Historically, the origins of professionalism, or of the formalisation of professional culture, derived from the evolution of character standards as a requirement for the certification of a professional. In law, for example, the central premises of character review are the protection of the public and the upholding of professionalism [13]. Today, every profession articulates expectations of how members of that profession ought to behave. Character, in short, is a moral condition of professionalism.
Focusing on character assessment at the end of one’s education or as a form of continuing education, however, may be too late. Moral lapses do not derive from inherent moral failings, as many would have us believe. These largely stem from inadequacies in the education students receive in preparation for professional life. Education about professionalism ought to start at the beginning of one’s professional education – or, as sociologists call it, professional socialization. It is now widely accepted that professional education alone does not promote character development or reasoning development and thus does not provide sufficient guidance or sufficient moral suasion on what it means to be, and what are the obligations of, a professional. Studies in dentistry have shown that change in moral judgement and cognitive problem-solving ability in ethical decision-making could be positively attributed to the introduction of an ethics curriculum [14,15]. As such, education about professionalism and professional practice ought to be integrated into professional education.
As for the 13 Dalhousie dental students, a formal ethics education that clarifies and articulates important values of professionalism, and of becoming a professional dentist, would go a long way. Much farther, in fact, then tossing them to the curb and ignoring, or even minimising, the systemic broader issues that propel, or compel, anyone to act so, well, unprofessionally.
List of References
1. National Post Editorial Board. To make the Dalhousie dental students’ punishment fit the crime. The National Post, 6 January 2015.
2. Lowe L. Safe, private way needed to report sexism, The Chronical Herald, 9 January 2015. 3. Haiven J. The ‘middle road’ won’t do for Dalhousie’s ‘gentlemen’ dentists, Rabble.ca, 24
December 2014.
4. CBC News. Dalhousie dentistry complaints date back to summer, student says, CBC.ca, 16 December 2014.
5. CBC News. Dalhousie dentistry student speaks out about sexism in faculty, CBC.ca, 17 December 2014.
6. Coubrough J. Misogyny complaints emerge from Manitoba dentistry program, CBC.ca, 22 December 2014.
7. Rush J. Dentistry has a far larger ‘boys’ club’ problem, The Globe and Mail, 24 December 2014.
8. Adams TL. Feminization of professions: The case of women in dentistry. Can J Sociology. 2005;30(1):71-94.
9. McKay J., Quiňonez CR. The feminization of dentistry: Implications for the profession, J Can Dent Assoc. 2012;78(c1).
10. Globe Editorial. Dalhousie’s handling of Facebook scandal is the right way to go, The Globe and Mail, 5 January 2015.
CM Bensimon BioéthiqueOnline 2015, 4/1 (http://bioethiqueonline.ca/4/1)
11. Embrett C. The changing face of dentistry. Ontario Dentist. 2014;91(7):16-18.
12. Chiose S. Dalhousie dentistry students scrambled to contain damage after comments became public. The Globe and Mail, 6 January 2015.
13. Rhode DL. Moral character as a professional credential. Yale Law Journal. 1985;491-603. 14. Bebeau MJ. The defining issues test and the four component model: Contributions to
professional education. J Moral Educ. 2002;31(3):271-295.
15. Bebeau MJ, Thoma SJ. The impact of a dental ethics curriculum on moral reasoning. J Dental Educ. 1994;58(9):684-692.
Managing Profound Suffering at the End-of-Life: Should
expanding access to continuous deep sedation be the priority?
COMMENTAIRE/
COMMENTARYJeffrey Kirby, MA, MD 1
Reçu/Received: 10 Nov 2014 Publié/Published: 30 Jan 2015 Éditeurs/Editors: Hadi Karsoho & Lise Lévesque
2015 J Kirby, Creative Commons Attribution 4.0 International License
Résumé Summary
En ce qui concerne le traitement et la gestion de la souffrance profonde à la fin de la vie, cet article soutient que la priorité ne devrait pas être la légalisation de l’aide médicale au suicide ou celle de l'euthanasie active et volontaire là où ces pratiques ne sont pas actuellement disponibles. Plutôt, les professionnels de la santé et la société devraient faire des efforts concertés afin d'accroître l’accès des patients à de la sédation proportionnelle pour soulager leur détresse et à de la sédation profonde continue.
This paper argues that in addressing and managing profound suffering at the end-of-life, the priority should not be the legalization of physician-assisted suicide or voluntary active euthanasia in jurisdictions where these practices are not currently available. Rather, concerted efforts should be made by society and the healthcare provider community to expand patient access to proportionate distress-relieving sedation and continuous deep sedation.
Mots clés Keywords
assistance médicale à mourir, souffrance profonde,
sédation continue, euthanasie, suicide assisté medical aid in dying, profound suffering, continuous deepsedation, euthanasia, assisted suicide
Affiliations des auteurs / Author Affiliations
1 Professor, Department of Bioethics, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada
Correspondance / Correspondence Dr. Jeffrey Kirby, jeffrey.kirby@dal.ca
Conflit d'intérêts Conflicts of Interest
Aucun déclaré None to declare
Introduction
The recent passing of Bill 52 in the Canadian province of Quebec, which provides a legislative framework for the practice of voluntary active euthanasia (VAE), has added some fresh kindling to the provocative fires of debate and controversy about three assisted death practices: continuous deep sedation (CDS), physician-assisted suicide (PAS) and voluntary active euthanasia [1]. In my view, the priority of the healthcare provider community and society in addressing profound suffering at the end-of-life in North American jurisdictions without legalized PAS should be concerted efforts to expand the access of patients to CDS and proportionate distress-relieving sedation. In arguing for the privileging of this approach over the legalization of PAS and VAE, there is no need to cast moral aspersions on either of these practices.
I begin by describing the relevant distinctions between two sets of health-related, assisted dying circumstances that are underappreciated in the academic literature and lay media. I then provide relevant details of the prioritized approach for which I am advocating, i.e., expanded access to sedation. Subsequently, through a comparative analysis of this approach and the legalization of PAS/VAE, I explore and uncover a set of advantages of the former approach over the latter in terms of potential relief of the profound suffering of patients at the end-of-life.
J Kirby BioéthiqueOnline 2015, 4/2 (http://bioethiqueonline.ca/4/2)
Two Distinct Sets of Assisted Dying Circumstances
There are two sets of health-related circumstances in which assisted dying practices can potentially be used to manage the suffering of patients. The first, and by far the most common, is the set of circumstances that are considered to constitute paradigm indications for the use of CDS, PAS and VAE [2]. These clinical scenarios are characterized by profound suffering – typically consisting of commingled and intersecting physical and psycho-existential distress elements [3,4] – that is experienced by patients as unbearable [5]. In such circumstances, the patient’s suffering has proven refractory to an array of acute and palliative care treatment modalities (including, in some cases, the use of proportionate distress-relieving sedation) in the context of anticipated ‘near’ death, i.e., attending healthcare providers estimate that death will occur within days to a few weeks.
The description of the associated required element of refractoriness in national Dutch guidelines is as good as any: when available treatment modalities have failed, or it is anticipated that they will either not be successful or are likely to result in more burdens than benefits, or when the capable patient has made an informed decision to forgo further possible treatment [6]. Initiation of CDS, i.e., the intentional induction and continuous maintenance of a coma-like level of sedation until death, requires either the direct consent of the capable patient or the indirect consent of the legally-designated substitute decision maker(s), who is usually a family member(s) [7]. Once CDS has been achieved, nutrition and hydration are usually discontinued, given the lack of rationale for their continued use in this context [5,8,9]. For patients whose death is estimated by their attending physicians to be ‘near’, the median time interval from initiation of CDS until death is one to four days [5,8].
The second set of health-related circumstances in which requests for PAS/VAE are sometimes made occurs much less frequently. In these non-paradigm circumstances, which have been described as “agent-narrative suffering” [10] scenarios, a capable person whose death is not anticipated to be ‘near’ requests assistance in dying because of the presence of a significant health condition that, from her/his perspective, makes the prospect of further life ‘not worth living’ because of one or more person-specific quality-of-life factors, e.g., inability to participate in activities that formerly made life meaningful or enjoyable; hopelessness; perception of progressive loss of ‘self’, dignity and/or independence; a preference for control over one’s destiny; not wishing to become a burden to loved ones [3,11]. Typically, individuals who wish to prematurely end their lives in these circumstances are highly actualized in educational, occupational and economic domains [3,12].
At the present time, individuals in these non-paradigm circumstances whose survival is anticipated to be more than six months do not have access to any of the assisted dying practices in North American jurisdictions, and the potential implementation of Bill 52 is unlikely to change this in Quebec, given that it contains a legislative requirement for the presence of “an advanced state of irreversible decline in capability” [1]. The current reluctance to de-link assisted dying practices to the presence of terminal health-states in North America seems to be well-entrenched, and this reluctance has likely been fortified in the public eye by critical responses to reports out of Belgium in recent years about the euthanizing (or planned euthanization) of a person with anorexia nervosa, middle-aged twins with congenital deafness who were progressively losing their sight due to glaucoma, a transgendered person and an incarcerated murderer-rapist. The access of individuals living in England and Wales who are in non-paradigm circumstances to an assisted death has arguably been enhanced by a state-instituted, pragmatic work-around: in 2010, the Director of Public Prosecutions disclosed a set of six mitigating factors, including direct-explicit consent, motivation by compassion and open-reporting to police, that, if present, are unlikely to lead to criminal prosecution of those who ‘reluctantly’ assist individuals to die (as long as, as subsequently amended, they have not been direct healthcare providers of the assisted person) [13]. This non-legislative approach is a possible, expedient option for North American jurisdictions where it is unlikely that assisted death practices will be legalized for other than ‘near-death’ clinical circumstances.
Expanded Access to Continuous Deep Sedation
At the present time, access to CDS is quite limited in North America and there are particular deficiencies in rural and other medically under-resourced settings. The Canadian Senate’s 2005 Still Not There, Quality End-of-Life Care Progress Report estimated that only 5% of Canadians have access to integrated palliative care including proportionate distress-relieving sedation and CDS, and that the percentage for those who reside in rural and remote areas is even lower [14]. The Ontario Health Technology Advisory Committee End-of-Life Collaborative reported in December 2014 that 70% of Canadians with advanced chronic illness, the underlying cause of most deaths, do not have access to formal end-of-life care [15]. In terms of the need for relief of terminal suffering through the use of an assisted death practice such as CDS, Timothy Quill and Robert Brody have indicated that, in their experience, 2% of patients have unacceptable relief of their pain-related distress at the end of life [16]. A 2007 study revealed that, of a cohort of patients who were actively-living with terminal cancer, 6% would request the use of an assisted death practice in their current circumstances if one was accessible to them [17].
In North American settings, CDS is primarily prescribed by urban-based palliative medicine specialists and administered to patients who are hospitalized in specialized palliative care units [18]. The accessibility of patients in near-death paradigm circumstances to CDS needs to be significantly improved. Enhancement of the existing capacities of family physicians to prescribe and direct the administration of this palliative care practice is required. With this goal in mind, the primary education of medical students/residents and the continuing professional development of practicing family physicians should include comprehensive training in the delivery of integrated palliative care, including CDS and proportionate distress-relieving sedation [8].
The current lack of competency of most North American family physicians to offer CDS as a component of integrated palliative care is due to a lack of training in assessing one element of the paradigm indications, and a corresponding lack of experience in prescribing and monitoring the practice. In terms of traditionally-acquired knowledge and skills, family physicians with practice experience are typically able to recognize/appreciate when their patients are experiencing profound suffering, and when their death is likely to occur within days to a few weeks. However, enhanced training is necessary to assist family physicians in their development of the knowledge and confidence to discern when their patient’s intolerable distress should be considered refractory. In addition to targeted education and professional development, an optimal supplementary mechanism to help achieve this objective would be to establish jurisdiction-wide networks of palliative medicine specialists who support the expanded access of patients to integrated palliative care and are willing to provide telephone (or videoconference, as available) support to family physicians while they are building their practice capacities in this regard.
Once CDS is requested by a patient or substitute decision maker who has been pre-informed of the full scope of possible palliative care interventions, the practical administration of sedating agents is relatively uncomplicated; in most cases, a benzodiazepine such as midazolam is administered by nurses (or trained family members) via continuous subcutaneous infusion sets in hospital, hospice or home settings [5]. (Approximately 80% percent of the CDS provided in the Netherlands is administered at home, and home-based CDS is a common occurrence in the UK [20].) Other than monitoring the level of achieved sedation, managing uncommon side effects, and infrequently changing subcutaneous infusion sites, nothing else of a complicated or technical nature needs to be performed in most circumstances. In clinical scenarios characterized by co-morbid terminal delirium and/or dyspnea that has not responded adequately to administration of a benzodiazepine, first-generation antipsychotic agents, such as levomepromazine and haloperidol, can be added to the subcutaneous treatment regime [5,21].
J Kirby BioéthiqueOnline 2015, 4/2 (http://bioethiqueonline.ca/4/2)
Advantages of an Expanded Access to CDS Approach over Legalization of
PAS/VAE
There are a number of advantages to an ‘expanded access to CDS’ approach over legalization of PAS/VAE in near-death paradigm circumstances in the sense of potential relief of the profound suffering of more patients. These advantages are described below under the categories of: buy-in considerations, a key difference in consent procedures, a distinction in the obligations to meet healthcare needs, and resource allocation considerations.
Buy-in Considerations
Unlike PAS and VAE, CDS is considered by palliative medicine specialists to fall within the scope of integrated palliative care, and CDS practice is reflected as such in the advisory guidelines of many national palliative medicine societies and associations [4,8,20,21]. Although I do not personally see/recognize a clear moral distinction between CDS and PAS/VAE, most palliative medicine specialists, family physicians and other healthcare providers do view CDS as distinct from, and less morally problematic than, PAS/VAE [18]. The doctrine of double effect is thought by most palliative medicine specialists and other physicians to extend to CDS (as opposed to PAS/VAE), i.e., it is morally permissible for doctors to provide CDS in near-death paradigm circumstances if the physician’s sole intention is to relieve suffering, even though the theoretically ‘bad effects’ of unconsciousness and minimal hastening of death are definitely foreseen in the former and possible in the latter (in the absence of matched cohort date, there remains no definitive answer to the question of whether CDS minimally hastens death, although it’s fair to claim that the use of CDS does not knowingly hasten death) [4,5]. This doctrine, derived from Roman Catholic moral theology and influenced by Kantian ethics, is usually cited as the primary theoretical justification for CDS by its proponents, despite recent academic/analytic work that has demonstrated the conceptual and psychological complexity of human intentions in this context, where motivations are ambiguous in nature and difficult to evaluate [4,18,21].
Those who recognize and value intention-based distinctions, as do most physicians, are more likely to buy into the enhanced access of patients in rural and other medically under-resourced settings to CDS than they are to: 1) support the legalization of PAS and/or VAE, and 2) participate in either of these latter practices. Another ‘buy-in’ advantage of CDS over VAE is that only the former practice allows for some perceived diffusion of professional responsibility for the actions taken; the sedative agent used in CDS is ordered by the attending physician and typically administered by a cohort of nurses (and/or family members in the home setting) while, in VAE, the participating physician orders (decides to administer) and, in most cases, subsequently directly injects a ‘lethal cocktail’ [19].
A Key Difference in Consent Procedures
Another important and under-appreciated distinction between CDS and PAS/VAE and an important, pragmatic advantage of CDS over the latter two practices, in the particular sense articulated above, relates to a difference in the standard consent procedures associated with these practices. In countries and jurisdictions in which PAS and/or VAE are legal, legislatively-based regulations require the direct consent of a capable patient [22]. However, in near-death paradigm circumstances, the capacity of patients to make their own end-of-life decisions is frequently compromised [7,12]. For those patients whose profound suffering, terminal state, and lack of further viable treatment options is first demonstrated in critical care settings, over ninety percent lack the capacity to make end-of-life decisions for themselves [23]. In reality, for the majority of patients in near-death paradigm circumstances in countries with and without legalized PAS and/or VAE, the only available option to relieve the patient’s profound suffering is CDS that has been consented-to by a family member (or other substitute decision maker).
Proponents of legalized PAS/VAE could argue that this particular advantage (in terms of the access of more patients to relief of their unbearable suffering) could be eliminated by revising current PAS/VAE practices to allow for indirect consent. However, such a change in legislation and practice would
require social consensus support in North American jurisdictions, which is unlikely to be achieved on a political level given prevailing fears and worries about intra-familial victimization and discrimination against differently-abled persons. So, for the time being at least, the profound suffering of a greater number of patients in near-death paradigm circumstances, i.e., those with and without capacity, could potentially be effectively relieved by CDS than by legalized PAS/VAE, as the latter practices can only be administered to the minority of patients who have retained their capacity to make healthcare decisions in these circumstances. Characterizing this as an advantage of the ‘enhanced access to CDS’ approach is not to suggest or claim that CDS is morally superior to legalized PAS/VAE on the sole basis of how the principle of respect for individual autonomy is differently-actualized in these practices.
A Potential Distinction in the Obligations to Meet Healthcare Needs
Beyond simple utility calculations, e.g., “there are more persons with profound distress in near-death paradigm circumstances than persons seeking medically-assisted dying in non-paradigm circumstances”, an ‘obligations to meet healthcare needs’ argument could possibly support the prioritization of expanded access to CDS over the legalization of PAS/VAE. As indicated above, CDS is the only assisted death practice that can meet the needs of the majority of patients in near-death paradigm circumstances, while only legalized PAS or VAE can meet the needs of those in non-paradigm circumstances, given the fixed CDS-related requirement for patients to be within a few weeks of death. The healthcare needs of persons who are experiencing unbearable suffering at the end-of-life are typically considered to be of high magnitude. Intense suffering typically engenders a strong obligation on the part of healthcare providers (and society) to address such distress on a priority basis.
The healthcare needs of individuals in non-paradigm circumstances include relief of existing distress and management of their underlying health condition(s). Given the previously-described motivations of persons who request PAS/VAE, the distress experienced by individuals in these circumstances tends to be primarily psycho-existential in nature, i.e., it is connected to, and constituted by, perceived (current or future) loss of valued self-identity and self-agency. Although, various types and forms of suffering are difficult to describe, quantify and compare, the active degree of suffering and related magnitude of healthcare need in relevant case histories are typically lower for most individuals in non-paradigm circumstances than for most in near-death non-paradigm circumstances [3,11]. This apparent differential in degree of healthcare need could conceivably give rise to a greater obligation to address the needs of individuals in the latter circumstances than to address the needs of those in the former, and provide a possible justification for prioritizing an ‘expanded access to CDS’ approach over the legalization of PAS/VAE in jurisdictions where one of the latter practices is not available.
Resource Allocation Considerations
From a ‘fair allocation of limited health resources’ perspective, another potential advantage of expanded access to CDS is that this approach is likely to be less costly to challenged, publicly-funded healthcare systems than the setting-up and continuous maintenance of expert- and staff-dependent commissions and formal regulatory mechanisms to monitor the legalized practices of PAS or VAE. Further, improving the access of patients in near-death paradigm circumstances to the already legal and accepted palliative care practice of CDS does not require the costly political advocacy and law-challenging efforts that are necessary to make PAS or VAE options in countries and jurisdictions where they are not currently legalized. There would, of course, be some initial costs associated with expanding the access of patients to CDS in North American jurisdictions, i.e., those expenses associated with enhancement of the curricula of medical schools and the remuneration of palliative medicine specialists who are engaged in capacity-building networks. In terms of financial considerations related to direct bedside care in near-death paradigm circumstances, there is likely ‘to be a wash’ between the costs associated with caring for patients at home for several-day periods of CDS and the expenses associated with delays in obtaining formal second opinions and in completing documentation that is required by PAS and VAE regulatory systems.
J Kirby BioéthiqueOnline 2015, 4/2 (http://bioethiqueonline.ca/4/2)
Conclusion
Although expanding the access of patients in near-death paradigm circumstances to CDS does not provide the distress-relief sought by individuals in non-paradigm circumstances, it does have the capacity to effectively manage the profound suffering of most patients at the end-of-life. Given the advantages of this approach over the legalization of PAS/VAE, in my view, concerted efforts to expand the access of patients to CDS should be prioritized over legalization efforts in North American jurisdictions where PAS/ or VAE is not already available or legislatively-approved.
References
1. National Assembly of the Province of Quebec:Bill 52: An Act Respecting End-of-Life Care, 2014.
2. Swart SJ, van der Heide A, van Zulen L, et al.Continuous palliative sedation: Not only a response to physical suffering. Journal of Palliative Medicine 2014;17(1):27-36.
3. Dees MK, Vernooij-Dassen MJ, and Vissers KC.‘Unbearable suffering’: A qualitative study on the perspectives of patients who request assistance in dying. Journal of Medical Ethics 2011;37:727-34.
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8. Chambaere K, Bilsen J, Cohen J, et al.Continuous deep sedation until death in Belgium: A nationwide survey. Archives of Internal Medicine 2010;170(5):490-93.
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10. Jansen LA, and Sulmasy DP.Proportionality, terminal suffering and the restorative goals of medicine. Theoretical Medicine 2002;23:321-37,324
11. Shildrick M.Deciding on death: Conventions and contestations in the context of disability. Journal of Bioethical Inquiry 2008;5(2):209-19.
12. Battin MP, van der Heide A, Ganzini L, et al.Legal physician-assisted dying in Oregon and the Netherlands: Evidence concerning the impact on patients in “vulnerable” groups. Journal of Medical Ethics 2007;33:591-97.
13. The Crown Prosecution Service. Assisted Suicide: Prosecution policy and guidance. 14. Carstairs, S. Still Not There Quality End-of-Life Care: A Progress Report. 2005.
15. Sikich N, and Ontario Health Technology Advisory Committee End-of-Life Collaborative, Health Quality Ontario.Health care for people approaching the end of life: An evidentiary framework. 2014.
16. Quill TE, and Brody RV.‘You promised me I wouldn’t die like this!’: A bad death as a medical emergency. Archives of Internal Medicine 1995;155:1250-54.
17. Wilson KG, Chochinov HM, McPherson CJ, et al.Desired for euthanasia or physician-assisted suicide in palliative cancer care. Health and Psychology 2007:26(3):314-23.
18. Lo B, and Rubenfeld G.Palliative sedation in dying patients: “We turn to it when everything else hasn’t worked”. Journal of the American Medical Association 2005;294(14):1810-16. 19. Raus K, Sterckx S, and Mortier F.Continuous deep sedation at the end of life and the “natural
death” hypothesis. Bioethics 2012;26(6):329-36.
20. Dean MM, Cellarius V, Henry B, et al.Framework for continuous palliative sedation therapy in Canada. Journal of Palliative Medicine 2012;5(8):870-76.
21. Quill TE, Dresser R, Brock DW.The rule of double effect – A critique of its role in end-of-life decision making. The New England Journal of Medicine 1997;337(24):1768-71.
22. Periera J.Legalizing euthanasia or assisted suicide: The illusion of safeguards and controls. Current Oncology 2011;18(2):e38-45.
23. Carlet J, Thijs LF, Antonelli M.Statement of the fifth international consensus conference in critical care: Challenges in end-of-life care in the ICU. Intensive Care Medicine 2003;30:770-84.
L Campo-Engelstein, T Chan BioéthiqueOnline 2015, 4/3 (http://bioethiqueonline.ca/4/3)
How Gene Patents May Inhibit Scientific Research
COMMENTAIRE/
COMMENTARYLisa Campo-Engelstein, PhD1, Tiffany Chan, MD2
Reçu/Received: 25 Nov 2014 Publié/Published: 10 Feb 2015 Éditrices/Éditors: Cécile Bensimon & Aliya Affdal
2015 L Campo-Engelstein, T Chan,Creative Commons Attribution 4.0 International License
Résumé Summary
Dans cet article, nous mettons en évidence trois façons dont les brevets sur les gènes pourraient nuire à la recherche scientifique. Premièrement, les lois relatives aux brevets sur les gènes risquent d’exacerber la culture du secret omniprésente en science. Deuxièmement, sans un accès à toutes les étiologies génétiques, les brevets sur les gènes peuvent limiter la capacité des chercheurs à étudier les maladies poly ou multigénétiques. Troisièmement, les brevets sur les gènes pourraient aboutir à un « maquis de brevets ».
In this paper, we point out three possible ways gene patents could impede scientific research. First, gene patent laws might exacerbate the culture of secrecy ubiquitous in science. Second, gene patents may limit researchers’ ability to study poly or multigenic diseases without access to all genetic etiologies. Third, gene patents could result in a “patent thicket”.
Mots clés Keywords
brevets sur les gènes, recherche scientifique, culture du
secret, maladies multigéniques, maquis de brevets gene patents, scientific research, culture of secrecy,multigenic diseases, patent thicket
Affiliations des auteurs / Author Affiliations
1 Alden March Bioethics Institute, OBGYN Department, Albany Medical College, Albany, NY, USA 2 Department of Radiology, Penn State University Hershey Medical Center, Hershey, PA, USA
Correspondance / Correspondence
Dr Lisa Campo-Engelstein, campoel@mail.amc.edu
Conflit d'intérêts Conflicts of Interest
Aucune déclaré None to declare
Gene patenting is a controversial topic, as seen with the recent Supreme Court case regarding Myriad Genetics’ patent on the two BRCA genes associated with hereditary breast and ovarian cancer [1]. Much of the literature on this topic focuses on the deeper philosophical question of whether genes should be patentable since they exist in nature but can be isolated by human-made procedures [2,3]. Our focus in this paper is not on the normative aspects of gene patenting, but on the impact gene patenting has on current scientific research and how this may change if gene patent law is more stringently followed. We limit our discussion to two general types of gene patents: those that cover genetic sequences and related proteins and those that cover methods, such as diagnostic tests [4]. Patents are time-based monopolies on specific inventions, and they serve to prevent others from making, using, selling, or importing the invention [5]. Patents, in general, are intended to stimulate innovation by rewarding investors with the opportunity to temporarily dominate the market, produce a profit, and continue to invest in the future. Indeed, patents are supposed to encourage and engender more developments by enabling those with the patent to further invest in and dedicate themselves to their research. Many believe that gene patenting does not impede future research, mainly because most researchers do not check regularly for patents on research inputs, and instead proceed with their projects regardless of whether their work includes patented material [6,7]. Some argue that gene patents are unlikely to further impede research any more than some of the barriers that science already has in place, such as the need to protect one’s work from criticism before enough evidence has been gathered or the intentional level of secrecy that allows one to be the first to publish their results [8].
Although gene patents do not currently adversely affect scientific research, how would scientific research be affected if gene patents were to be more strictly enforced? Some may claim this possible scenario is not worth contemplating, believing it is unlikely that the current status quo will change so drastically anytime in the near future. Yet, as we saw with the Myriad case, in which the Supreme Court ruled that “A naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated” [1], the landscape of gene patents is changing. Thanks to this case, the topic of gene patents has gained national prominence and increased scrutiny of this issue could lead to policy changes that further affect research. Further, scientists may gradually become advocates of the gene patenting laws as they gain experience with the gene patenting process and begin to hold more patents. Currently, 4,389 human genes have either been patented or had related intellectual property claims by more than 1,100 different claimants [9]. The DNA Patent Database, developed by the Kennedy Institute of Ethics at Georgetown University, routinely searches for DNA using class codes defined by United States Patent and Trademark Office and terms specific to nucleic acids, such as ‘DNA’, ‘RNA’, and ‘nucleotide’. This database shows a steady increase in DNA patents, from 2,722 to 4,389 between 2005 and 2011 (https://dnapatents.georgetown.edu).
With this growing number of gene patents, there may be a greater interest in better enforcing the rights of patented property, primarily because the number of affected researchers will have grown. In addition, a recent study has shown that institutions are demonstrating an increasing awareness of the common disregard for current patents: 22% of respondents reported receiving notices from their institutions to respect patent rights compared to 15% five years ago [6]. Ignorance of existing patents is well known [7] and even documented by the National Health Service (NHS), which performs the majority of diagnostic testing in the United Kingdom. Just one successful case by a patent holder against an organization like the NHS can herald more stringent enforcement of patent law. For this reason, some argue that it is better to address these concerns proactively [10]. Yet, there may not be much concern for patent holders suing countries with publicly funded healthcare systems, such as Canada and many European countries, because the financial and political strength of their systems make them more difficult to go up against, which may explain why Myriad never sued these countries for patent rights on the BRCA mutations [11].
We fear that if gene patent law, as it is currently written, were to be upheld, there would be adverse effects on scientific research. Here, we briefly discuss three possible adverse effects.
First, gene patent laws might exacerbate the culture of secrecy ubiquitous in science. The drive to succeed in the scientific field inevitably hampers the willingness of researchers to share information with one another; it is well known that discovery and publication drives scientific research and boosts an academic’s reputation. A better reputation increases grant money, tenure, and the likelihood of attracting quality students. All of these factors feedback on continuing to improve the academic’s chances of success in the future [12]. Unfortunately, the process of attaining publication often – especially in the health sciences – requires secrecy in order to protect one’s findings from becoming known to others, who may take that knowledge to secure a publication of their own. Research that is most likely to be published are those that reveal some result for the first time, and thus there is a great emphasis on being the first to publish on a specific topic.
However, this confidentiality can ultimately be counterproductive to the field of science. Studies have shown that collaboration among researchers is particularly important in providing access to experts in certain research areas as well as learning opportunities through colleagues who provide different perspectives [13]. Scientific collaboration has been categorized into four stages: Foundation, Formulation, Sustainment, and Conclusion [14]. Each stage consists of various factors that influence collaboration, and two important factors found in the first two stages in this system are relevant to gene patenting: Resource Accessibility and Intellectual Property and Other Legal Issues. Since gene patenting often requires researchers to pay and obtain a license in order to access data, this may form another barrier to the communication of research materials and tools between individuals
L Campo-Engelstein, T Chan BioéthiqueOnline 2015, 4/3 (http://bioethiqueonline.ca/4/3)
working in a field that can best, and perhaps only, move forward with cooperation among research groups.
Second, while some diseases are known to be caused by one gene, such as Huntington’s Disease, others are caused by several genes and environmental factors. To fully understand the many poly or multigenic diseases that fall into this latter category, such as Type 1 and Type 2 Diabetes [15], it is important for scientists to examine all genetic etiologies. If one or more contributing genes are patented, research on these diseases could be thwarted. Given the dramatic increase in gene patents, we can expect that more and more scientists will find themselves needing to use patented genes. Indeed, as the discovery of new disease states, pathologies, and treatments involving genes of interest begin to overlap, cooperation will play an increasingly important role, and anything that impedes cooperation, including gene patenting with significant enough penalties for infringement, may negatively affect the progress of research.
Third, it has been theorized that the continued patenting of genes will result in a “patent thicket”, which refers to the difficulties associated with working on patented genes, including obtaining licenses and paying for those licenses. Many scientists may be discouraged by this additional work, and eventually there will likely be less work dedicated to improving techniques and processes that have already been patented [9]. The concern is that new projects will focus on genes for which there are no associated patents. Therefore, gene patenting could hinder research in the future, though it may not yet appear to be an issue. This is a serious consequence that should be considered very carefully in the controversy over gene patenting. Current literature argues that patents cannot impede research because in practice, no research institution has ever been sued for patent infringement [16]. However, there are two reasons for why there has yet to be litigation for patent infringement. First, the individual or research group may not have the financial resources to sue. Filing a lawsuit takes time, money, and resources. Second, those who realize that they have used patented material without authorization may simply backtrack, especially if they are at an early stage of their project and choose to work on another topic entirely. The lack of patent infringement, thus, cannot be reflective of the effect gene patenting could have on research.
Currently, there is no significant evidence that gene patents inhibit scientific research. However, this is not because gene patents do not have the potential to significantly impede scientific research; rather, it is because these patents are not being enforced. While it is possible that gene patent laws could continue to be ignored indefinitely, we doubt this will be the case given how rapidly the field of genetics is growing and the dramatic increase in the number of gene patents. It is thus pertinent to reflect on how gene patents could affect scientific research in the likely event that they start being enforced, as we have discussed in this paper.
References
1. United States Supreme Court Ruling. Association for Molecular Pathology v. Myriad Genetics, Inc. October 2012 Term.
2. Resnik DB. DNA patents and human dignity. Journal of Law, Medicine & Ethics. 2001; (29)1:152-165.
3. Farrelly C. Gene patents and justice. Journal of Value Inquiry. 2007; (41)2-4 :147-163 4. Boutros N. Race to the cure: Why gene patents pave the way for breast cancer research.
American University Journal of Gender Social Policy and Law. 2011; 19(3):1009-1030. 5. Caulfield T, Gold ER, Cho MK. Patenting human genetic material: refocusing the debate.
Nature Review Genetics. 2000; 1(3):227-231.
6. Walsh JP, Cho C, Cohen WM. Patents, material transfers and access to research inputs in biomedical research. Final Report to the National Academy of Sciences’ Committee
7. Huys I, Matthijs G, Van Overwalle G. The fate and future of patents on human genes and genetic diagnostic methods. Nature Review Genetics. 2012; 13(6):441-8.
8. Resnik DB. DNA patents and scientific discovery and innovation: Assessing benefits and risks. Science and Engineering Ethics. 2001; 7(1):29-62.
9. Salzberg SL. The perils of gene patents. Nature Publishing Group. 2012; 91(6):969-71. 10. Hawkins N. The Impact of Human Gene Patents on Genetic Testing in the UK. Genetic
Medicine. 2011; 13(4):320-324.
11. Williams-Jones B. History of a gene patent: tracing the development and application of commercial BRCA testing. Health Law Journal. 2002; 10:123-46.
12. Saladino TR. Seeing the Forest Through the Trees: Gene Patents and the Reality of the Commons. Berkeley Technical Law Journal. 2011; 26(1):301-328.
13. Hara N, Solomon P, Seung-Lye K, Sonnenwald DH. An emerging view of scientific
collaboration: Scientists' perspectives on collaboration and factors that impact collaboration. Journal of the American Society for Information Science and Technology. 2003; 54(10):952-965.
14. Sonnenwald D. Scientific Collaboration. Annual Review of Information Science and Technology. 2007; 41(1):643-681.
15. Bottino R, Trucco M. Multifaceted therapeutic Approaches for a multigenetic disease.
Diabetes. 2005; 54 Supplement 2 S79-S86.
16. Holman CM. The Impact of Human Gene Patents on Innovation and Access: A Survey of Human Gene Patent Litigation. UC Berkeley Recent Work 2008.
H Karsoho BioéthiqueOnline 2015, 4/4 (http://bioethiqueonline.ca/4/4)
The Supreme Court of Canada Ruling in Carter v. Canada: A
New Era of End-of-Life Care for Canadians
LATRIBUNEDE L
’
ÉDITEUR/
EDITOR’
SSOAPBOX Hadi Karsoho1,2Reçu/Received: 9 Feb 2015 Publié/Published: 13 Feb 2015
2015 H Karsoho, Creative Commons Attribution 4.0 International License
Mots clés Keywords
aide médicale à mourir, Carter c. Canada, Cour suprême du Canada, euthanasie, compétence constitutionnelle, législation
physician-assisted dying, Carter v. Canada, Supreme Court of Canada, euthanasia, constitutional jurisdiction, legislation
Affiliations des auteurs / Author Affiliations
1 Editor, BioéthiqueOnline
2 Department of Sociology, Department of Social Studies of Medicine, McGill University, Montreal, Canada
Correspondance / Correspondence Hadi Karsoho, hadi.karsoho@gmail.com
Remerciements Acknowledgements
Cette Tribune a été écrite suivant la suggestion de Bryn Williams-Jones que je tiens à remercier chaleureusement pour son soutien. Je tiens également à remercier Elise Smith et Renaud Boulanger pour leurs commentaires et suggestions constructifs.
The idea for writing this Soapbox came from Bryn Williams-Jones and I gratefully acknowledge his suggestion and support. I would also like to thank Elise Smith and Renaud Boulanger for their constructive feedback.
Conflit d’intérêts Conflicts of Interest
Aucun déclaré None to declare
Exonération Disclaimer
Les opinions exprimées ici sont celles de l’auteur et ne reflètent pas nécessairement celles de la revue.
The views expressed here are the author’s and do not necessarily reflect those of the journal.
In a unanimous ruling released on February 6, 2015, the Supreme Court of Canada (SCC) found in Carter v. Canada (Attorney General) [1] that the federal Criminal Code [2] prohibitions on physician-assisted dying (PAD) to have infringed on Canadians’ Charter rights to life, liberty, and security. With this historic judgment, Canada has become the second country in the world, after Colombia, to have allowed for PAD on constitutional grounds.1 Carter v. Canada had its origin with the death of a British
Columbia woman, Kay Carter, at the Dignitas assisted suicide clinic in Switzerland. Slightly over a year later, Carter’s daughter and son-in-law launched constitutional litigation along with the British Columbia Civil Liberties Association, a family medicine physician, and Gloria Taylor, a woman suffering from Amyotrophic Lateral Sclerosis. In 2012, the trial judge found for the claimants and ruled as unconstitutional the impugned prohibitions, a decision that was later overturned by the B.C. Court of Appeal. The SCC granted the claimants leave to appeal and heard oral arguments on October 15, 2014.
The SCC found sections 241(b)2 and 143 of the Criminal Code to have infringed on Canadians’ rights
to life, liberty and security of the person guaranteed under section 7 of the Charter of the Rights and Freedoms [3]. The law infringes on the right to life insofar as it has the effect of forcing some
1 The courts in Montana and New Mexico decriminalized physician-assisted suicide in 2009 and 2014 respectively; however, these decisions were based on state constitutions and their effects are thus limited to those jurisdictions.
2 Section 241(b) prohibits anyone from aiding and abetting another person’s suicide. 3 Section 14 prohibits anyone from consenting to their own death.
individuals to take their own lives prematurely for fear that they may be unable to do so at a later time when they will have become disabled or their suffering is too great. The law infringes on the right to liberty insofar as it deprives individuals of the right to make medical decisions concerning their own bodily integrity; and it infringes on the right to security because it forces some individuals to endure intolerable suffering. Further, the SCC found the law to be overly broad: the purpose of the law is to protect vulnerable individuals from being induced to commit suicide. The law, however, catches others outside of this group of protected persons – i.e., other non-vulnerable individuals who wish to hasten their own deaths. More importantly, the infringement is not saved by section 1 of the Charter – the Charter provision that allows the state to curtail constitutional rights in the interests of society – because the Court agreed with the trial judge that evidence from Canada and abroad showed there to be less restrictive means to protect vulnerable individuals, other than an absolute prohibition.
Reading media reports published soon after the release of the decision, bioethicists might be forgiven for thinking that this case is concerned only with physician-assisted suicide. Many national and international media refer to assisted suicide in their headlines and bodies of texts when discussing the practice at the heart of this case [4-7]. But make no mistake: the SCC decriminalized both euthanasia and physician-assisted suicide, practices that many bioethicists have long recognized to be ethically related but which may be distinguished in practical terms. The American Medical Association’s Code of Medical Ethics, for example, defines physician-assisted suicide (PAS) as “when a physician facilitates a patient’s death by providing the necessary means and/or information to enable the patient to perform the life-ending act” [8]. Euthanasia is distinguished from PAS in that another person – a physician in places that have legalized euthanasia – administers the life-ending act. Specifically, the SCC decriminalized “physician-assisted death” or “physician-assisted dying” and it accepted the claimants’ definition of this term as a “situation where a physician provides or administers medication that intentionally brings about the patient’s death, at the request of the patient.” [1]
The obfuscation in the media may be unintentional; contrary to popular understanding, the terms ‘euthanasia’ and ‘physician-assisted suicide’ are not self-explanatory. In the last couple of decades, these terms have evolved to acquire highly technical specificities. They are, in other words, legal and clinical (not to mention ethical) constructs, labels that can be understood only in terms of their legal and clinical enactment at a specific historical juncture. Even one of the SCC justices was initially confused as regards the use and implication of these terms. When I attended the hearing last October, Justice LeBel interrupted the counsel for the claimants early in the proceeding when he asked if “we are discussing strictly assisted suicide, we are not discussing euthanasia this morning?” [9] Further, the SCC may itself be partly to blame for the confusion. In its 85-page decision, the SCC shied away from using the term ‘euthanasia’. The one time it used the term substantively was in the context of a discussion of the slippery slope argument: “Finally, it is argued that without an absolute prohibition on assisted dying, Canada will descend the slippery slope into euthanasia and condoned murder.” [1] A careful reading of this paragraph revealed that the SCC had used the term ‘euthanasia’ much as a bioethicist would use the term ‘involuntary euthanasia’, that is, killing someone against their own wishes, or culpable homicide. So it ought to be clear for readers that Carter v. Canada has decriminalized both ‘physician-assisted suicide’ and ‘voluntary active euthanasia’, as they are conventionally understood in the bioethics literature.
In the aftermath of this decision, what does a Canadian PAD regime look like? Here, it is instructive to recall the distinction between decriminalization and legalization. The SCC has just decriminalized PAD. The only criteria for access to the practice that the SCC specified are: a) being a competent adult; b) having a clear consent; and c) having a diagnosis of a grievous and irremediable medical condition that causes suffering that is intolerable to the individual. The SCC has thus only set the ‘floor’ of the regime; the ‘ceiling’ is to be determined by the federal and provincial governments in terms of the legislation they will enact, should they choose to do so. One intervener exclaimed that the “judgment permits assisted suicide on the basis of psychological suffering.” [10] But the SCC specified no such thing; it leaves the possibility for such criterion to be articulated by governments in their
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legislation. So far, Quebec is the only province that has passed a law on PAD, Bill 52: An Act respecting end-of-life care [11], set to take effect in December 2015. While Quebec’s law will allow for patients with irremediable and unbearable psychological suffering to request medical aid-in-dying, it also stipulates that the patient must be at the end of his or her life.
The issue of inter-jurisdictional immunity was also addressed by the SCC. One of the questions the SCC was asked to consider – a question that was raised only at the SCC level after the passage of Quebec’s Act respecting end-of-life care – was whether the Criminal Code prohibitions could not apply on the issue of PAD because they encroached on healthcare, a constitutionally protected area of provincial competence. The SCC answered this question in the negative and reaffirmed instead that health “is an area of concurrent jurisdiction, which suggests that aspects of physician-assisted dying must be the subject of valid legislation by both levels of government, depending on the circumstances and focus of the legislation.” [1] This finding by the SCC means that the federal government could, in theory, modify the Criminal Code in such a way as to conflict with Quebec’s Act, which would then certainly lead to another constitutional battle in the court. I hope the federal government avoids the adversarial route and chooses instead to work with the provincial governments in creating a new legislation, especially to ensure uniformity of the regimes across the country.
The ball is now clearly in the federal government’s court. The federal justice minister had promised that the government would “study the decision and ensure all perspectives on this difficult issue are heard.” [12] Quebec could provide a model with the public and expert consultation process it conducted leading up to and during the creation of Bill 52. However, that process took five years and the federal government does not have the luxury of time. It therefore ought to work with invested stakeholders such as the Canadian Medical Association and other healthcare professionals’ associations in crafting legislation. While individual bioethicists have been active participants in the debate, the Canadian Bioethics Society has been strangely silent. Now that the conversation has shifted to the substance of subsequent legislation, the Canadian Bioethics Society ought to look into ways in which it can contribute meaningfully to this process. I have no doubt that the SCC ruling in Carter v. Canada will have ripple effects beyond the borders of this country, much as the legalization of PAD in other jurisdictions has been an important historical condition of possibility for this case.
List of References
1. Carter v. Canada (Attorney General) 2015 SCC 5. 2. Criminal Code R.S.C., 1985, c. C-46
3. Canadian Charter of Rights and Freedoms, Constitution Act, 1982
4. Austen, Ian. (2015, February 6). Canada Court Strikes Down Ban on Aiding Patient Suicide, The New York Times.
5. Clark, Campbell. (2015, February 7). Timing of assisted suicide law could determine its contents, The Globe and Mail, p. A10.
6. Gallagher, James. (2015, February 6). Canada to allow doctor-assisted suicide. BBC News. 7. MacLeod, Ian. (2015, February 6). Supreme Court of Canada strikes down ban on
doctor-assisted suicide, National Post.
8. American Medical Association. (1996). Opinion 2.211 - Physician-Assisted Suicide. 9. StenoTran. (2014). Court transcript of the hearing of Carter v. Canada (Attorney General)
2015 SCC 5 on 10/15/2014.
10. Council of Canadians with Disabilities. (2015). Commentary on SCC Assisted Suicide Judgment in Carter v. Canada - Key Concerns.
11.Bill n°52 : An Act respecting end-of-life care, Assembléé nationale de Québec
12. MacKay, Peter. (2015, February 6). Statement by the Minister of Justice Regarding the Supreme Court of Canada Ruling in Carter et al. v. Attorney General of Canada. Government of Canada.
What’s Unethical About Interprofessional Collaboration?
COMMENTAIRE/
COMMENTARYLise Lévesque1
Reçu/Received: 17 Dec 2014 Publié/Published: 10 Mar 2015 Éditrices/Editors: Maude Laliberté & Aliya Affdal
2015 L Lévesque, Creative Commons Attribution 4.0 International License
Résumé Summary
Dans ce commentaire, la valeur bénéfique des dimensions r e l a t i o n n e l l e s r e l a t i v e a u x c o l l a b o r a t i o n s interprofessionnelles est mise en valeur afin de démontrer que les conflits d’intérêts émanant des auto-référencements sont plus complexes que les conflits d’intérêts traditionnels. Un échange entre professionnels de la santé et éthiciens est recommandé afin de mieux comprendre les aspects relationnels, qui sont essentiels au bien-être et à l’autonomie du patient, concernant différents soins et contextes organisationnels qui se produisent dans les secteurs publics et privés. Ceci afin d’éclairer les élaborations politiques quant à la gestion des conflits d’intérêts associés aux auto-référencements.
In this commentary, the beneficial value of the relational aspects of interprofessional collaboration is emphasized to demonstrate that conflict of interests arising in self-referrals are more complex than presented in classic cases of conflicts of interest. A dialog involving health professionals and ethicists is recommended to better understand the relational aspects that are essential to patient wellness and autonomy, in relation to the various care and organizational contexts across private and public sectors. The goal is to inform policy making on management of conflicts of interests associated with self-referrals.
Mots clés Keywords
référencements, collaboration interprofessionnel, équipe de
soins, éthique, relation de soins, soins axés sur le patient referrals, interprofessional collaboration, healthcare team, ethics, care relation, patient-centred care
Affiliations des auteurs / Author Affiliations
1 Lise Lévesque, AXDEV Group Inc., Brossard, Québec, Canada
Correspondance / Correspondence Lise Lévesque, levesquel@axdevgroup.com
Remerciements Acknowledgements
L’auteure tient à remercier ses collègues pour les discussions inspirantes autour de la collaboration interprofessionnelle.
The author wishes to thank her colleagues for inspiring discussions on interprofessional collaboration.
Conflit d’intérêts Conflicts of Interest
L’auteure est Éditrice de la section Comptes-rendus pour
BioéthiqueOnline. Depuis 2014, elle est chercheure et
consultante pour le groupe AXDEV, une entreprise privée offrant des services spécialisés dans la recherche relative à la formation médicale. Les opinions exprimées dans le présent commentaire sont celles de l’auteure et n’engagent aucunement d’actuels ou d’anciens employeurs.
T h e a u t h o r i s S e c t i o n E d i t o r o f R e v i e w s a t
BioéthiqueOnline. Since 2014, she has been a researcher
and consultant at AXDEV Group Inc., a private firm offering specialised services in research on medical education. The views expressed in this Commentary are those of the author and do not reflect the positions of any present or past employers.
Introduction
In 2014, BioéthiqueOnline published a Commentary by Anne Hudon on the conflicts of interest [1] that may arise with self-referrals, defined as the act of referring a patient to a professional, a clinic or a service in which the referent has a financial interest [2]. It appeared that such self-referrals correspond to a classic situation of an unacceptable conflict of interest, and so should be avoided and condemned.
