Photo ID 71252867© Stepan Popov| Dreamstime.com Abstract While Medical Assistance in Dying (MAiD) has been legalized in Canada since 2016, it still excludes eligibility for persons who have mental illness as a sole underlying medical condition. This temporary exclusion was set to expire on March 17th, 2024, but was set 3 years further back by the Government of Canada to March 17th, 2027. This paper presents a critical appraisal of the case of MAiD for individuals with (...) class='Hi'>mental illness as the sole underlying medical condition through the analysis of three ethical theories: principlism, deontology, and utilitarianism. Through evidence and discussion, it will be demonstrated that MAiD, in this context, may be ethically justifiable on the grounds of upholding human rights, protecting dignity, and minimizing suffering. Introduction In June of 2016, Medical Assistance in Dying (MAiD) was legalized in Canada.[1] Throughout the first six years, a temporary exclusion of eligibility for persons suffering solely from mental illness was extended.[2] The exclusion of mental illness as a sole underlying medical condition was set to expire on March 17, 2024.[3] However, on February 1, 2024, just over a month before the set expiration, the Government of Canada once again extended the exclusion, this time setting it back three years to March 17, 2027. There are currently several countries that allow MAiD for mental illness, including Belgium, the Netherlands, and Luxembourg.[4] Some countries, like Spain,[5] do not give specific guidance, leaving the matter under discussion by ethicists and courts. In these countries, there are specific (although different) requirements for the process; overall, for mental illness, the illness must be verifiable and not simply related to a perception of satisfaction with the length of life. This extension ignited discussion on whether MAiD for persons who have mental illness as a sole underlying medical condition in Canada is ethically acceptable. As a complex, multi-faceted, and interdisciplinary issue, ethicists assessing MAiD must take into account various moral obligations and considerations. This paper analyses MAiD in this context through the application of three ethical theories: principlism, deontology, and utilitarianism. This paper concludes that, based on the current evidence and knowledge of this developing situation, MAiD for persons with mental illness in Canada may be ethically justified on the grounds of upholding human rights, labour obligations, and dignity. Through the exploration of research and discussions, it will be demonstrated that society at large ought to protect liberty and act towards relieving suffering, thereby supporting the potential eligibility of MAiD for persons who have mental illness. Principlism: The Capacity and Ability to Assess and Decide for One’s Own Life Principlism is the application of four principles: autonomy, beneficence, non-maleficence, and justice. Principlism supports permitting MAiD for mental illness due to the importance of autonomy in decision-making, equitable and just practices for MAiD assessors, and reducing suffering for patients and their family member(s) and/or friend(s). Carter v. Canada, the Canadian Supreme Court ruling of 2015—which changed Canadian law to allow for MAiD—held that the prohibition of MAiD infringed on Canadians’ right to “life, liberty, and the security of the person.” In a unanimous decision, the Supreme Court of Canada decided that the criminal prohibition of MAiD violates the Canadian Charter of Rights and Freedoms.[6] The Court concluded that the criminal law prohibiting MAiD interfered with people’s autonomy and dignity, which are protected by the rights of liberty and security of the person.[7] The ruling emphasized that Canada’s constitution reflects the fundamental importance of individual autonomy in personal decision-making. Research provides evidence that MAiD improves autonomy: A study among psychiatric patients found that 8 of 48 psychiatric patients said the mere option of accessing MAiD was enough to assess their future options for living wholly.[8] These findings complement a study entailing interviews with 30 adults who have mental illness, which emphasized that the ability to access MAiD allows individuals to analyze their quality of life, envision their desired future, and make decisions accordingly.[9] Although not all participants agreed that mental illness as the only underlying medical condition was appropriate for MAiD eligibility, many participants agreed that patient autonomy in decision-making was paramount and should be respected. However, autonomy as an ethical principle does not immediately grant all persons with mental illness the option to access MAiD. There are multiple eligibility criteria for those who wish to receive MAiD, which still must be approved and assessed. Currently, eligibility criteria for MAiD states that individuals must “give informed consent to receive MAiD, meaning that the person has consented to receiving MAiD after they have received all information needed to make this decision.”[10] Consent requires capability or capacity, which is the ability to understand relevant information, appreciate its potential consequences, and make an informed decision for oneself.[11] Like for many other diseases, disabilities, and conditions, patient capability is determined on a case-by-case basis.[12] Given the stigma surrounding those struggling with mental health, this thorough case-by-case examination of an individual patient’s capability and capacity without prejudice or partiality should lead to equitable and fair treatment. Without appropriate testing, those with mental illness could be wrongly stripped of their decision-making power. Arguments against MAiD for those with mental illness have raised concerns about the potential for individuals to harm themselves and others. A survey of MAiD providers demonstrated that physicians believed that the bereavement experience following MAiD is challenging and profoundly distinct and that bereavement support for all members involved should be required.[13] However, while watching one die (of MAiD) may cause harm to their families, friends, and support system at large, it is also important to recognize that watching someone suffer and struggle through their mental health journey also poses significant harm. Qualitative studies in Ontario, Canada, have interviewed family members of persons with mental illness as a sole medical condition, and interviewees shared that witnessing the illness and its impacts on their close one's lives was a very difficult experience.[14] As it relates to MAiD, participants emphasized that those living with mental illness are in the best position to understand their own pain and suffering and, in turn, make their own decisions about relief.[15] In an interview, a MAiD provider stated that MAiD may provide less suffering and more peace, and that, although it “depends on the family,... usually the family is more prepared and at peace.”[16] On the contrary, a person who has mental illness may perceive choosing MAiD as beneficial to their family member(s) and/or friend(s). Among those who died by MAiD in 2021, 35.7 percent reported that they perceived themselves as a burden on their family and friends.[17] While some authors report their concerns regarding such social burden as a potential driving factor for MAiD requests, others report that there are other additional burdens associated with requesting MAiD that may be financial, societal, and personal.[18] As such, the extension of MAiD eligibility to those with mental illness will likely only allow a small number of people to be granted MAiD.[19] Many others will be diverted to appropriate services and treatments. Patients’ decision to choose MAID noted their ability to make choices about their own care, reflecting the value of autonomy.[20] Although it is difficult to determine what is good for families in individual cases, MAiD presents an option that is both beneficent and non-maleficent. Therefore, these arguments satisfy the principles which do not necessarily conflict with MAiD. Deontology: The Duty to Recognize Vulnerability and Relieve Suffering The argument here begins with the fundamental focus of deontology—that moral duty lies in an action rather than in its consequences. Further discussion is required to analyze the impact of MAiD on healthcare workers. The Canadian Medical Association (CMA) Code of Ethics and Professionalism requires physicians to abide by virtues, commitments, and responsibilities in delivering health care and service.[21] The code states that “a compassionate physician recognizes suffering and vulnerability, … and alleviate[s] the patient’s suffering.”[22] In the context of MAiD for persons with mental illness as a sole underlying medical condition, vulnerabilities could be wide in range. Many Canadians are concerned with the interaction between mental health and other social determinants of health, such as the lack of medical, disability, financial, housing, and social support and resources.[23] As a result, another layer to the ethical issue arises: Does permitting MAiD for mental illness treat the symptoms of the issue rather than the root problem itself (social, economic, and systemic inequities)? Some argue against MAiD, stating that the nation should first focus on developing better quality care and service.[24] Others support MAiD as a potential harm reduction approach, given that most of these unjust conditions require a higher level of long-term structural and public policy overhaul.[25] The CMA Code also calls upon physicians to recognize and alleviate patients’ suffering. Some argue that while physicians and medical professionals do work to relieve suffering, they are trained to do so through a primary care-based diagnose-and-treat approach.[26] Studies that have captured Canadian physicians’ experiences providing MAiD report that, although physicians stated that the work was rewarding, it came with many challenges, including strained relationships with coworkers, increased workload, and inadequate compensation.[27] Physicians report that a part of the problem is that MAiD rules are written by lawyers and experts who are removed from its reality in medical practice. As a result, there is a lack of clarity surrounding practice norms and a lack of support for physicians.[28] Thus, while healthcare practitioners have a duty to relieve patients’ suffering, they should feel adequately trained and supported in doing so. If physicians and healthcare professionals recognize vulnerability and relieve suffering, then they should act accordingly, regardless of potential associations or outcomes. Making persons with mental illness eligible for MAiD ensures that treatment to relieve their suffering is available. However, it is imperative that there are sufficient resources and support available to healthcare professionals to ensure that they feel prepared and supported to provide MAiD, should they wish to do so. Utilitarianism: Minimizing Intolerable Suffering and Dying with Dignity Overall, utilitarianism is largely concerned with the greatest happiness principle—to increase the amount of happiness for the greatest number of people. So far, this paper has analyzed individual, family, and practitioner-based ethical considerations. But if MAiD were to be extended to those with mental illness as a singular underlying medical condition, what implications would this have for the world and society at large? There is a global drive toward authorizing organized ending of life, with an increasing number of countries legalizing MAiD.[29] The medical system is generally seen as a safe and appropriate system to carry out MAiD, especially when suicide and self-harm are regarded as “alternatives.” Yet despite these worldwide efforts, many argue through the theory of utilitarianism that the inability to see long-term consequences renders MAiD a premature solution, particularly for those who are unable or unwilling to seek other forms of potentially healing treatment or for those who may undergo MAiD only for a technological innovation or biomedical advancement to later come along as a potential cure.[30] While it is true that MAiD does not prevent these “premature deaths,” it is also true that it does not claim to.[31] MAiD provides an option to alleviate intolerable suffering. Some individuals with severe mental illness do describe their condition as intolerable suffering. MAiD is seen as an option to minimize suffering. It can also be seen as a way to die with dignity and relief.[32] While predicting outcomes is difficult, extending MAiD eligibility for persons experiencing mental illness does not undermine its ability to end suffering. It allows eligible individuals to take charge of their health, their life, and their future. Conclusion Based on the current evidence, allowing MAiD for persons with mental illness as their sole underlying medical condition presents as an ethically justifiable action. The right to self-determination and fair accessibility demonstrates that there is more harm done by prohibiting MAiD for mental illness than allowing it. Such liberty is a right, and in the context of relieving suffering, it is a duty that healthcare workers must uphold, although the ability to opt out of providing MAiD is well established. Thus, to recognize vulnerability and relieve suffering means to provide methods, such as MAiD, for those deeply impacted by mental illness. These justifications stand at both the individual level and for society at large. Nevertheless, it remains imperative to take an upstream approach that addresses the social determinants of health and aims to prevent mental illness and promote long-term, beneficial social change for those suffering, struggling, and vulnerable in our communities. - [1] Jaro Kotalik and David W. Shannon, Medical Assistance in Dying (MAID) in Canada Key Multidisciplinary Perspectives, 1st ed. 2023., The International Library of Bioethics, 104 (Cham: Springer International Publishing, 2023), https://doi.org/10.1007/978-3-031-30002-8. [2] Department of Justice Government of Canada, “Canada’s Medical Assistance in Dying (MAID) Law,” February 21, 2024, https://www.justice.gc.ca/eng/cj-jp/ad-am/bk-di.html. [3] Health Canada, “Final Report of the Expert Panel on MAiD and Mental Illness,” transparency - other, May 13, 2022, https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advisory-bodies/expert-panel-maid-mental-illness/final-report-expert-panel-maid-mental-illness.html. [4] Federal Public Service (FPS) Health Belgium, “Federal Commission for the Control and Evaluation of Euthanasia,” n.d., https://consultativebodies.health.belgium.be/en/advisory-and-consultative-bodies/federal-commission- control-and-evaluation-euthanasia.; Government of Netherlands, “Is Euthanasia Allowed in the Netherlands?,” n.d., https://www.government.nl/topics/euthanasia/is-euthanasia-allowed.; “Information on Requesting Euthanasia or Assisted Suicide,” n.d., https://guichet.public.lu/en/citoyens/sante/fin-vie/euthanasie/euthanasie-assistance-suicide.html. [5] Luis Espericueta, First official report on euthanasia in Spain: A comparison with the Canadian and New Zealand experiences, Medicina Clínica (English Edition), Volume 161, Issue 10, 2023, Pages 445-447, ISSN 2387-0206, https://doi.org/10.1016/j.medcle.2023.06.021. [6] Government of Canada, “The Canadian Charter of Rights and Freedoms,” March 15, 2021, https://www.justice.gc.ca/eng/csj-sjc/rfc-dlc/ccrf-ccdl/. [7] Supreme Court of Canada, “Carter v. Canada,” Constitutional Law, 2015, https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/index.do.; Kotalik and Shannon, Medical Assistance in Dying (MAID) in Canada Key Multidisciplinary Perspectives. [8] Karandeep Sonu Gaind, “What Does ‘Irremediability’ in Mental Illness Mean?,” Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie 65, no. 9 (September 2020): 604–6, https://doi.org/10.1177/0706743720928656; Lieve Thienpont et al., “Euthanasia Requests, Procedures and Outcomes for 100 Belgian Patients Suffering from Psychiatric Disorders: A Retrospective, Descriptive Study,” BMJ Open 5, no. 7 (July 27, 2015): e007454, https://doi.org/10.1136/bmjopen-2014-007454. [9] Hamer Bastidas-Bilbao et al., “Walking Alongside: Views of Family Members on Medical Assistance in Dying for Mental Illness as the Sole Underlying Medical Condition,” Qualitative Health Research 33 (September 29, 2023), https://doi.org/10.1177/10497323231197365. [10] Government of Canada, “Canada’s Medical Assistance in Dying (MAID) Law.” [11] Commission sur les soins de fin de vie, “Les conditions de l’admissibilité à l’aide médicale à mourir au Québec: la constance dans l’évolution de la loi concernant les soins de fin de vie,” June 9, 2023, https://csfv.gouv.qc.ca/ fileadmin/docs/autres_rapports/csfv_lcsfv_conditions_ amm_2023-06-29.pdf.; Trudo Lemmens, “When Death Becomes Therapy: Canada’s Troubling Normalization of Health Care Provider Ending of Life,” The American Journal of Bioethics 23, no. 11 (November 2, 2023): 79–84, https://doi.org/10.1080/15265161.2023.2265265. [12] Justine Dembo, Udo Schuklenk, and Jonathan Reggler, “‘For Their Own Good’: A Response to Popular Arguments Against Permitting Medical Assistance in Dying (MAID) Where Mental Illness Is the Sole Underlying Condition,” Canadian Journal of Psychiatry. Revue Canadienne De Psychiatrie 63, no. 7 (July 2018): 451–56, https://doi.org/10.1177/0706743718766055. [13] Konia Trouton et al., “Attitudes and Expectations Regarding Bereavement Support for Patients, Family Members, and Friends: Findings from a Survey of MAID Providers,” British Columbia Medical Journal 62, no. 1 (2020). [14] Bastidas-Bilbao et al., “Walking Alongside.” [15] Bastidas-Bilbao et al. [16] Trouton et al., “Attitudes and Expectations Regarding Bereavement Support for Patients, Family Members, and Friends: Findings from a Survey of MAID Providers,” 2020. [17] Ramona Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” Palliative & Supportive Care 21, no. 5 (October 2023): 871–78, https://doi.org/10.1017/S1478951523001025; Health Canada, “Third Annual Report on Medical Assistance in Dying in Canada 2021,” report on plans and priorities;transparency - other, July 26, 2022, https://www.canada.ca/en/health-canada/services/publications/health-system-services/annual-report-medical-assistance-dying-2021.html; Lemmens, “When Death Becomes Therapy.” [18] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023.; Bastidas-Bilbao et al., “Walking Alongside.” [19] Olivia Stefanovich, “Opposition Parties Call for Indefinite Pause to MAID Expansion for Mental Illness | CBC News,” Canadian Broadcasting Corporation, January 28, 2024, https://www.cbc.ca/news/politics/special-joint-committee-maid-mental-illness-report-1.7095679; Benjamin Lopez Steven, “Number of Assisted Deaths Jumped More than 30 per Cent in 2022, Report Says | CBC News,” Canadian Broadcasting Corporation, October 27, 2023, https://www.cbc.ca/news/politics/maid-canada-report-2022-1.7009704. [20] Hamer Bastidas-Bilbao et al., “Searching for Relief from Suffering: A Patient-Oriented Qualitative Study on Medical Assistance in Dying for Mental Illness as the Sole Underlying Medical Condition,” Social Science & Medicine 331 (August 1, 2023): 116075, https://doi.org/10.1016/j.socscimed.2023.116075. [21] Canadian Medical Association, “Canadian Medical Association Code of Ethics and Professionalism” (Canada: Canadian Medical Association, December 8, 2018), https://policybase.cma.ca/link/policy13937. [22] Canadian Medical Association. [23] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023; Stefanovich, “Opposition Parties Call for Indefinite Pause to MAID Expansion for Mental Illness | CBC News.” [24] John Paul Tasker, “Liberal Government Promoting a ‘culture of Death’ with Medical Assistance in Dying Law, Conservative MP Says | CBC News,” Canadian Broadcasting Corporation, March 6, 2023, https://www.cbc.ca/news/politics/culture-of-death-medical-assistance-in-dying-mental-illness-1.6769504. [25] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023; Kayla Wiebe and Amy Mullin, “Choosing Death in Unjust Conditions: Hope, Autonomy and Harm Reduction,” Journal of Medical Ethics, April 26, 2023, https://doi.org/10.1136/jme-2022-108871. [26] Ramona Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” Palliative & Supportive Care 21, no. 5 (October 2023): 871–78, https://doi.org/10.1017/S1478951523001025. [27] Konia Trouton et al., “Attitudes and Expectations Regarding Bereavement Support for Patients, Family Members, and Friends: Findings from a Survey of MAID Providers,” British Columbia Medical Journal 62, no. 1 (2020), https://bcmj.org/articles/attitudes-and-expectations-regarding-bereavement-support-patients-family-m embers-and.; William Robert Nielsen, “MAiD in Canada: Ethical Considerations in Medical Assistance in Dying,” Canadian Journal of Bioethics 4, no. 2 (December 9, 2021): 93–98, https://doi.org/10.7202/1084456ar. [28] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023. [29] Lemmens, “When Death Becomes Therapy.” [30] William Robert Nielsen, “MAiD in Canada: Ethical Considerations in Medical Assistance in Dying,” Canadian Journal of Bioethics 4, no. 2 (December 1, 2021): 93–98, https://doi.org/10.7202/1084456ar. [31] Steven, “Number of Assisted Deaths Jumped More than 30 per Cent in 2022, Report Says | CBC News.” [32] A. Plaisance et al., “Quebec Population Highly Supportive of Extending Medical Aid in Dying to Incapacitated Persons and People Suffering Only from a Mental Illness: Content Analysis of Attitudes and Representations,” Ethics, Medicine and Public Health 21 (April 1, 2022): 100759, https://doi.org/10.1016/j.jemep.2022.100759. (shrink)

L’assistance médicale à mourir (AMM) a reçu beaucoup d’attention de la part de nombreux acteurs dans le domaine de la bioéthique. Des philosophes, des théologiens, des avocats et des cliniciens de toutes sortes ont abordé de nombreux aspects difficiles de cette question. Le débat public, la politique publique et la loi ont été renforcés par des analyses disciplinaires variées. Avec la légalisation du AMM au Canada, on s’intéresse maintenant à des questions qui ont toujours été éclipsées par le (...) débat sur l’autorisation de l’AMM. Un de ces problèmes est l’arrêt volontaire de manger et boire (AVMB) comme une alternative à l’AMM. Dans cet article, je vais appliquer une perspective légale à la question. Une compréhension des aspects légaux de l’AVMB permet d'établir les fondements d'une réflexion éthique au sujet de son autorisation. Est-il permis pour ceux qui préfèrent l’AVMB à l’AMM? Est-il permis pour ceux qui ne sont pas admissibles à l’AMM en vertu de notre législation actuelle – pour ceux qui n’ont pas de maladie grave et irrémédiable, pour les mineurs matures, pour les personnes dont la seule condition médicale sous-jacente est un trouble mental et qui ne rencontrent pas les critères d’admissibilité, et pour les personnes ayant perdu leur capacité, mais ayant rempli une directive préalable? (shrink)

L’aide médicale à mourir (AMM) devrait être légalisée au Canada à partir de mars 2024 pour les personnes dont la seule condition médicale sous-jacente est un trouble ou une maladie mentale (AMM MM-SCMS). Dans le cadre de l’élaboration de lignes directrices visant à assurer la sécurité et la cohérence de l’AMM MM-SCMS, il convient d’accorder une attention suffisante à l’interprétation de la terminologie ambiguë de la législation actuelle et de veiller à ce que ces interprétations (...) soient fondées sur des principes éthiques acceptables. (shrink)

We recently conducted a Quebec-wide postal survey designed to assess major stakeholders’ attitudes toward extending medical assistance in dying (MAiD) to non-competent patients with dementia. This paper reports the results of qualitative analyses of the comments left by the respondents at the end of the questionnaire. The questionnaire was mailed to randomly selected representatives of four stakeholder groups: adults 65 years old and over (n=621), informal caregivers of persons with dementia (n=471), nurses (n=514) and physicians (n=653) caring for such patients (...) at the time of the survey. A total of 1,050 questionnaires were returned, of which 420 included comments. Comments were coded into categories, themes and subthemes, and the frequency of categories compared across the four stakeholder groups. Coding enabled identification of 23 themes and five sub-themes clustered into seven major thematic categories. These relate to: 1) the respondent, 2) the survey and questionnaire, 3) persons with dementia, 4) their informal caregivers, 5) the healthcare system, 6) the legal framework governing end-of-life care, and 7) society in general. These categories were identified in all stakeholder groups, although to a varying degree for five of the seven categories. This study highlights the host of factors that may influence a person’s attitude toward extending MAiD to non-competent patients with dementia. It also illustrates how making systematic use of free-text comments can provide valuable insight into attitudes toward complex social policy issues and extend understanding of postal survey findings. (shrink)

The introduction of medical assistance in dying (MAID) in Quebec and Canada raises the question of extending this service to minors. The constant presence of nurses at the patient’s bedside leads them to receive requests related to MAID. The aim of this study is to explore the perceptions of nurses working in paediatric oncology services concerning the possibility for adolescents over 14 years of age requesting MAID. Six nurses working in paediatric oncology or palliative care or in direct contact (...) with adolescents at the end of their lives as part of their nursing work took part in an individual semi-directed interview. The results of this research highlight that: 1) nurses recognise their supportive role in the care of patients at the end of life; 2) most have a professional opinion in favour of the MAID for adults and distinguish this from their personal opinion; 3) they value the discussions around the MAID and are concerned about the establishment of criteria for it; and 4) long experience as a nurse leads to more concerns about the expansion of the MAID, but at the same time makes nurses more comfortable providing information about this subject. In light of these findings, academic and paediatric health care institutions need to recognise and evaluate the need for training nurses on MAID to better equip them to deal with such situations and thus better meet the needs of their patients. (shrink)

La récente modification de la loi canadienne permettant l’accès à l’aide médicale à mourir en restreint l’admissibilité, entre autres critères, à ceux pour qui « la mort naturelle est devenue raisonnablement prévisible ». Une révision récente de certains aspects de la loi a examiné les preuves concernant l’accès à l’aide médicale à mourir dans trois situations de refus : demandes de mineurs matures, demandes anticipées et demandes pour lesquelles la maladie mentale est la seule condition (...) class='Hi'>médicale sous-jacente [1]. L’exigence de cet examen a été incluse dans la loi qui a introduit l’aide médicale à mourir au Canada. Tant le changement initial de la loi que l’examen lui-même négligent la prise en compte de ceux qui ont des souffrances intolérables, et pour lesquels la mort naturelle n’est pas raisonnablement prévisible. Cet article explore la possibilité d’étendre l’accès à l’aide médicale à mourir en supprimant ce critère limitatif. Il considère également les défis éthiques que cela peut présenter pour ceux qui travaillent en réhabilitation. (shrink)

Il semble que la mise en oeuvre des droits reconnus par les législateurs et les tribunaux en contexte d’avortement tardif et d’aide médicale à mourir connaît, en pratique, un problème d’effectuation. En effet, nous nous trouvons actuellement dans une ère où le droit accorde énormément d’importance à l’autonomie individuelle dans le domaine médical, mais où les pratiques et les autres normativités viennent considérablement limiter cette autonomie. Il convient, dès lors, de poser un regard critique sur le (...) concept d’autonomie en contexte d’avortement tardif et d’aide médicale à mourir. Ces constats soulèvent des questionnements sur le rôle et les limites du droit étatique lorsque transposé en contexte clinique, ainsi que sur le peu d’attention que porte le droit aux destinataires de la norme. Le défi consiste alors à faire cohabiter les différentes normes et valeurs afin que les mécanismes de prises de décisions traduisent un souci réel d’assurer le vivre ensemble. (shrink)

Context: Since 2015, physicians are the only health professionals who have the legal authority to administer medical aid in dying (MAID) in Quebec. A new legislative context is bringing major changes to their end-of-life care practice. Objective: Explore the meaning-making factors that emerge from the experience of physicians administering MAID in order to shed light on what leads them to integrate this practice into their professional continuum. Methodology: Semi-structured interviews were conducted with ten physicians who had performed at least one (...) MAID throughout the territory of the CIUSSS de l’Estrie. Analysis: Conducted using Pierre Paillé’s (1994) grounded theorization, it showed that MAID is a human approach requiring time and social skills, and where life skills are paramount. The results suggest that MAID is located at the boundaries of the physician’s personal and professional identity. In short, what motivates a physician to participate in the MAID process is their narrative identity, including the values and meaning that they give to their experiential journey. Conclusion: MAID is an existential form of care, and the process is experienced differently by each physician; therefore, it is important to respect the meaning and values of each physician, whether or not they incorporate MAID into their medical practice. (shrink)

La mort assistée par un prestataire est en passe de devenir l’une des principales causes de décès au Canada depuis l’adoption de la loi sur l’aide médicale à mourir (AMM) en 2016. Ce qui devait être exceptionnel est devenu courant; certains demandent qu’on s’y attende. De plus en plus de patients atteints de maladies chroniques non terminales sont euthanasiés. Le personnel de santé approuve et propose désormais des MAiD aux patients vulnérables qui sont dépressifs, handicapés, atteints d’une (...) maladie chronique ou appauvris. Cet article présente une justification du point de vue de la loi morale transcendante, traditionnellement appelée loi naturelle, pour expliquer pourquoi le Canada a maintenant le régime d’euthanasie le plus libéral au monde. L’acte d’euthanasie exige que le prestataire mette délibérément fin à la vie du patient en lui administrant une substance mortelle. Cette pratique est contraire à la loi morale transcendante : ne pas tuer. Dès lors qu’une culture rejette délibérément cette loi fondamentale et adopte une éthique utilitaire dépourvue de tout principe, à l’exception de la notion d’autonomie, il est inévitable que cette pratique entraîne une ambiguïté et une incertitude éthique. Au fur et à mesure que la pratique persiste et devient la norme, l’aveuglement moral se développe et conduit à des abus flagrants sur les êtres humains. Je présente un diagramme éthique, la courbe de dissociation morale, qui illustre la raison des tendances observées au Canada. Le système de santé canadien doit réaffirmer les principes de l’éthique hippocratique et la dignité inhérente de ses patients. Les professionnels de la santé doivent donner la priorité aux soins palliatifs de haute qualité, empreints de compassion, et dire « non » à l’idée de mettre délibérément fin à la vie de patients souffrants. Ce faisant, la clarté morale sera retrouvée et les plus vulnérables de la société seront protégés. (shrink)

Le programme canadien d’aide médicale à mourir (AMM), qui repose sur une législation ambitieuse et des règlements détaillés, n’a pas réussi à fournir aux Canadiens suffisamment de preuves accessibles au public pour montrer qu’il fonctionne comme le prévoit les exigences de la loi, les règlements et les attentes de toutes les parties prenantes. La loi fédérale qui a été adoptée en 2016 a défini les critères d’éligibilité et mis en place un certain nombre de garanties qui devaient être (...) satisfaites avant de fournir une aide à mourir à une personne afin de ne pas transgresser le droit pénal. La responsabilité du contrôle du respect des critères d’éligibilité et des garanties procédurales a été confiée par le ministère fédéral de la santé (responsable de l’ensemble du contrôle) aux gouvernements provinciaux et territoriaux. Certains gouvernements ont publié des données statistiques concernant le programme, mais aucun n’a encore publié un rapport complet sur le respect des critères d’éligibilité et des garanties, comme l’exigent la loi et les règlements. Cet article explique le processus, explore les raisons possibles de cette lacune et propose quelques suggestions d’actions qui pourraient rectifier cet aspect du programme d’AMM. La responsabilité et la transparence font partie intégrante de la mise en oeuvre du programme d’AMM et les publications des rapports de suivi fédéraux et provinciaux/territoriaux obligatoires constituent une approche importante pour obtenir la confiance dans le programme. (shrink)

À la lumière de la législation actuelle sur l’aide médicale à mourir (AMM; aussi appelée euthanasie et suicide assisté) dans différents pays du monde, certains arguments ont été consacrés au droit à l’objection de conscience pour les professionnels de la santé dans ces pratiques spécifiques. Les objectifs de cette étude exploratoire sont de fournir une vue d’ensemble des motivations et des causes qui se cachent derrière l’objection de conscience identifiée par la littérature précédente selon les expériences des professionnels (...) et de vérifier si ces motivations correspondent aux débats théoriques sur l’objection de conscience. Comme le montrent les résultats, il existe une dissonance entre les motivations incluses dans la définition traditionnelle et courante de l’objection de conscience utilisée dans les cadre théoriques et spéculatifs et les facteurs réels que les études empiriques relèvent comme motivations déclarées pour s’opposer à l’AMM. Par conséquent, soit nous envisageons de nouveaux facteurs à inclure dans les causes de la “conscience”, soit nous acceptons qu’il existe des motivations qui ne sont pas réellement applicables à l’objection de conscience et qui devraient être traitées par d’autres moyens. L’objection de conscience à l’AMM étant multiforme, il peut y avoir différents types de motivations qui agissent en même temps. Il est donc pertinent de rééquilibrer les considérations théoriques et empiriques pour bien comprendre la complexité du phénomène et ainsi donner des pistes sur la meilleure façon de traiter l’objection de conscience. (shrink)

Une personne compétente peut-elle refuser des soins afin de rendre son décès naturel raisonnablement prévisible pour être admissible à l’aide médicale à mourir (AMM)? Prenons l’exemple d’un patient compétent atteint d’une paralysie du côté gauche à la suite d’un accident vasculaire cérébral droit qui ne devrait pas mourir avant de nombreuses années ; normalement, la cause de son décès ne serait pas prévisible. Cependant, il refuse de se retourner régulièrement, de sorte que son médecin peut prédire que des (...) plaies de pression se développeront, entraînant une infection pour laquelle il refusera le traitement et mourra par conséquent. Est-il maintenant admissible à l’AMM? Prenons l’exemple d’un patient compétent atteint d’une sténose spinale (affection non mortelle) qui refuse de manger (mais pas de boire pour ne pas perdre sa capacité à cause de la déshydratation). Par conséquent, son médecin peut prédire la mort par famine. Est-elle maintenant admissible à l’AMM? Pour répondre à ces questions, nous devons répondre à trois sous-questions : 1) les patients compétents ont-ils le droit de refuser des soins ; 2) les prestataires de soins de santé ont-ils l’obligation de respecter ces refus ; et 3) les décès résultant de refus de soins sont-ils naturels aux fins de déterminer si un patient est admissible à l’AMM? Si un patient compétent a le droit de refuser certains soins particuliers et que les prestataires de soins de santé ont l’obligation de respecter ce refus, et si le décès qui résulterait du refus de ces soins est naturel, alors ce refus de soins est une voie légale vers le AMM. Toutefois, si le patient compétent n’a pas le droit de refuser certains soins particuliers, ou si les prestataires de soins de santé n’ont pas l’obligation de respecter ce refus, ou si le décès qui résulterait du refus de ces soins n’est pas naturel, alors ce refus de soins ne constitue pas une voie légale vers le AMM. Dans cet article, nous explorons ce terrain juridique complexe avec les implications éthiques les plus profondes : l’accès à l’AMM. (shrink)

Les critiques actuelles des diagnostics psychiatriques, qu’elles viennent des antipsychiatres, des béhavioristes, des constructionnistes sociaux, des szasziens et des foucaldiens, rejettent généralement l’idée que le concept de trouble mental est légitime du point de vue médical, ne laissant donc aucun argument solide à partir duquel il soit possible de mener une critique constructive et d’établir un dialogue avec la psychiatrie. Ces positions ne réussissent également pas à expliquer les fortes intuitions populaires qui permettent aux gens de distinguer (...) les troubles psychologiques des autres conditions psychologiques négatives. Selon l’analyse de la dysfonction préjudiciable présentée dans cet article, un trouble mental est une condition : 1) préjudiciable, un concept évaluatif basé sur des valeurs sociales ; et 2) causée par une dysfonction psychologique, un concept factuel se rapportant à un mécanisme psychologique qui accomplit une fonction pour laquelle il a été biologiquement conçu . L’analyse DP est ainsi une position hybride qui requiert à la fois que des critères évaluatifs et factuels soient satisfaits pour garantir l’attribution d’un trouble. Nous argumentons que l’analyse DP réussit admirablement à expliquer les jugements intuitifs quant à ce qui est un trouble et à ce qui en n’est pas. La composante factuelle permet également de critiquer le critère diagnostique du DSM, ce que nous ferons à l’aide de plusieurs exemples . Ces critiques déterminent où le DSM a dévié de ses propres hypothèses et ainsi considéré comme des troubles ce qui n’en est pas. Elles expliquent également pourquoi les tentatives du DSM de remédier au problème en introduisant le critère du « cliniquement significatif » échouent.Current antipsychiatric, behaviorist, social-constructivist, Szaszian, and Foucauldian critiques of psychiatric diagnosis generally reject mental disorder as a medically legitimate concept, thus allowing no place to stand from which to mount a constructive critique and dialogue with psychiatry. These views also fail to explain the robust folk intuitions by which people distinguish psychological disorders from other negative psychological conditions. According to the harmful dysfunction analysis presented in this paper, a mental disorder is condition that is harmful, a value concept judged by social values ; and caused by a psychological dysfunction, a factual concept referring to failure of a psychological mechanism to perform a function for which it is biologically designed . The HD analysis is thus a hybrid account that requires both value and factual criteria to be satisfied before attribution of disorder is warranted. It is argued that the HD analysis has considerable success in explaining intuitive judgments about disorder versus non-disorder. The factual component also allows for a critique of DSM diagnostic criteria for specific categories, with several examples discussed. These critiques identify where the DSM has deviated from its own deepest assumptions and labeled non-disorders as disorders, and why the DSM’s own attempts to fix the problem, as with the «clinical significance» criterion, do not succeed. (shrink)

De nos jours, les sociétés mandatent fortement la médecine, par des législations variées – sédation, euthanasie, aide médicale à mourir –, pour construire la fin de vie d'autrui à sa demande. L'éthique se trouve de plus en plus sollicitée dans les pratiques soignantes. Mais quelle éthique? Une accumulation de principes? Une éthique réduite à la seule normativité juridique, à un protocole? S'efforçant de réfléchir à quoi se trouvent aujourd'hui confrontés les professionnels s'ils deviennent, dans les faits, les "gardiens" (...) du sens de l'existence de celui, celle qui n'en peut plus, peut-on se contenter de la seule raison pour déployer la signification d'une action? S'il importe de rendre compte en raison des motifs d'une décision, d'un acte, ces derniers s'inscrivent aussi dans un registre plus large, celui de la spiritualité. C'est la voie qu'explore cet ouvrage : comment faire habiter ensemble l'éthique et la spiritualité pour penser la demande et les modalités de réponse à la construction contemporaine du mourir? (shrink)

The entry into force in Quebec of the law regulating medical assistance in dying seems to have revived discussions on the concept of conscientious objection (CO) among health professionals. In order to better understand this concept, an integrative review of 39 articles, both national and international, was carried out. To be considered for this review, the articles had to include a definition of CO and at least one criterion justifying its acceptability, or not, in the Western context of care. A (...) theoretical representation of the data extracted from the articles was developed by an inductive thematic process. This representation, which illustrates CO and its criteria of acceptability in the health field, is articulated in relation to four interconnected poles. Two of these poles, care and professional competence, underlie the very definition of CO since without one or the other, the latter cannot exist. The other two poles, collective and individual, convey the values and powers involved when it comes to CO in a healthcare context. The interaction between these four poles illustrates the criteria of acceptability or non-acceptability of CO. This representation of CO thus makes possible a dynamic view of CO and has the advantage of being adaptable to various types and contexts of care, beyond medical assistance in dying. It also offers a theoretical basis for further exploration of this concept. (shrink)

Context: In most jurisdictions where medical-aid-in-dying is available, this option is reserved for individuals suffering from incurable physical conditions. Currently, in Canada, people who have a mental illness are legally excluded from accessing MAiD. Methods: We developed a questionnaire for mental health care providers to better understand their perspectives related to ethical issues in relation to MAiD in the context of severe and persistent suffering caused by mental illness. We used a mixed-methods survey approach, using a (...) concurrent embedded model with both closed and open-ended questions. Findings: 477 healthcare providers from the province of Québec completed the questionnaire. One third of the sample were nurses, one quarter psychologists and one quarter psycho-educators. Nearly half of the respondents considered that people with a severe mental illness should be granted the right to opt for MAiD as a way to end their suffering. Respondents were more likely to feel comfortable listening to the person and participating in discussions related to MAiD for a mental illness than offering care or the means for the person to access MAiD. Most reported that they had not received adequate/sufficient training, education or preparation in order to address ethical questions surrounding MAiD. Conclusions: The findings highlight how extending MAiD to people with a mental illness would affect daily practices for mental healthcare providers who work directly with people who may request MAiD. The survey results also reinforce the need for adequate training and professional education in this complex area of care. (shrink)

Les personnes présentant des troubles psychiques rencontrent des difficultés à s’insérer sur le marché du travail. Dans cette étude, nous évaluons dans quelle mesure les employeurs se préoccupent de l’accès des jeunes adultes qui présentent des troubles psychiques au travail salarié. Nous mettons l’emphase notamment sur les facteurs contextuels qui influencent les jugements et les comportements des employeurs durant le processus de l’embauche. Les résultats montrent que l’adhésion à l’Accord Norvégien sur la Vie Professionnelle Inclusive et le degré de formalisation (...) des procédures d’embauche vont de pair avec l’adoption de mesures inclusives en matière de recrutement de jeunes adultes qui présentent des troubles psychiques. Cependant, malgré cet accord, peu d’entreprises norvégiennes embauchent de jeunes adultes ainsi classés. De même, seul un petit nombre d’entreprises invitent à un entretien d’embauche un candidat qualifié présentant ces troubles. Notre étude concorde ainsi avec les recherches suggérant que les réticences ou les préjugés des employeurs au recrutement des personnes avec des troubles psychiques contribuent à leurs difficultés sur le marché du travail. (shrink)

RésuméDans cet article, je soutiens que certains patients irrémédiablement dépressifs ont la capacité décisionnelle de consentir au traitement même s'ils veulent mourir. On dit que ces patients ont des déficits de capacité appréciative parce qu'ils manquent de compréhension quant à leur condition. Je soutiens que certains de ces patients acquièrent une telle compréhension s'ils peuvent connaître et articuler une gamme de possibilités futures concernant leur santé. Cet argument nécessite une lentille phénoménologique. La phénoménologie saisit quelque chose de fondamental au sujet (...) de la nature des conditions psychiatriques, comme l'expérience temporelle, qui est sans doute nécessaire pour une évaluation plus approfondie de la capacité requise pour recevoir l'aide médicale à mourir (AMM). (shrink)

Photo by Hannah Busing on Unsplash INTRODUCTION Religion has long provided guidance that has led to standards reflected in some aspects of medical practices and traditions. The recent bioethical literature addresses numerous new problems posed by advancing medical technology and demonstrates an erosion of standards rooted in religion and long widely accepted as almost axiomatic. In the deep soul-searching that pervades the publications on bioethics, several disturbing and dangerous trends neglect some basic lessons of philosophy, logic, and history. The bioethics (...) discourse on medical aid in dying emphasizes similarity over previously recognized important distinguishing features. For example, it overplays a likeness between assistance in dying and the withdrawal of life-saving technology. In many bioethics’ topics, arguments based on a logical continuum are used to question the lines demarcating important moral differences. l. The Line Between Ethical and Not: Logic Based on Continuum Careful case selection, often either end of a continuum, allows the tearing down or ridiculing of many rules and codes across most professions and fields of interest. This situation holds true for traffic laws as well as medical ethics guidelines. It is relatively simple for those who desire to attack a particular viewpoint by selecting a case that makes that position seem untenable. In the ethics realm, good and bad medicine exist at opposite ends of an ethical continuum, with many practices lying in between. For example, much of medical ethics exists between the Nazi criminal physicians and the most sainted nurse or physician. A gradual progression occurred over less than two decades from a utilitarian position that supported limited euthanasia for those with certain mental illnesses to genocide. German society embraced a utilitarian ethic in which the value of human life no longer was intrinsic but instrumental.[1] Many morally significant points on a continuum were then ignored as the misguided utilitarian policy rampantly continued. A point in the continuum to distinguish between ethically justifiable and that which is not can be difficult to identify compared to the two extremes. This continuum is not unique to ethics but can be applied to almost any other aspect of human life and endeavor. Between a severely ill schizophrenic person and a superbly well-adjusted individual, there is a continuum of mental and psychological function. The existence of a continuum should not paralyze thinking and prevent us from drawing lines and identifying moral differences based on objective criteria as well as moral philosophy. Yet, by focusing on a continuum, many bioethicists use logic to disregard dividing lines between an "ethical" and an "unethical" act. Unfortunately, sometimes bioethicists draw revolutionary conclusions that would change the scope of medical practices which is accepted as ethical. There are many examples of similar shifts on the continuum. Many authors argue for the ethical permissibility of abortion by pointing out that the human fetus is no different in various characteristics, one arguing it is as like an ape or chick as it is like a person,[2] and does not achieve unique human and individual characteristics until well into the first year of life.[3] While human fetuses arguably do not have certain distinctive qualities of personhood, most people shy away from the logical next conclusion: permitting infanticide. For example, Joshua Lederberg condemns infanticide, in the face of biological illogic, because of our emotional commitment to infants, to me, a relatively weak explanation. Sir Francis Crick suggests we might consider birth at two days of life in order to decide whether an infant is a "suitable" member of society.[4] Giublini and Minerva suggest that infanticide should be permissible since late pregnancy abortions are permissible, arguing there is no significant difference between a fetus just before birth and an infant just after birth.[5] Clearly the continuum approach would allow for subjective arguments in favor of later infanticide at other points many days post-birth. Years ago, with a cynical tone, I mentioned infanticide as a further step on the continuum beyond abortion, and I was rightly shouted down as being deliberately provocative to assert the logic would ever stretch so far. While it is not an accepted mainstream position, the movement in academic settings from widespread condemnation to limited possible acceptance of infanticide has taken place in an incredibly short time. Public opinion and medical opinion in these areas have shifted dramatically in a short time. In another area, from a biological and chemical point of view, there is a continuum from man down to a single carbon atom. Yet, it would not seem logical to ignore the emotional differences, the meaning of personhood, or the moral distinction between killing an insect and killing a person. ll. A False Continuum: Medical Aid in Dying I assert that there has been an erosion of ethical guidelines in recent years attributable to using continuums to camouflage important distinctions. James Rachels’ work on active and passive euthanasia, which contends that the two are ethically identical, exemplifies that logic.[6] He illustrates this thesis, using a continuum to compare different scenarios with like consequences as morally equivalent, by comparing the deliberate drowning of a child with a deliberate failure to rescue a drowning child when easily able to do so. The author's comparison proposes that since much of the medical profession has already made peace with withholding treatment in order to hasten death, consistency inexorably demands that we permit active euthanasia as well.[7] When permission for active euthanasia was first introduced, it was limited exclusively to patients suffering severely from an intractable, incurable, and irreversible disease. These guidelines have been continuously eroded. There is now a substantial serious consideration for permitting active euthanasia of healthy elderly individuals who feel that they have completed their lives and are "tired of living."[8] There are many moral and factual differences along the ethical continuum. In human life, there is a difference between a live baby and a fetus, between a viable fetus and one that is not, between a fetus and a zygote, and between a zygote and a sperm cell. Similarly, there is a difference between pulling a trigger to kill someone and not interfering in preventing his death, which is reprehensible though both may be. There is a difference between not resuscitating an 80-year-old man with cancer when his heart stops and injecting him with a fatal dose of potassium chloride. I argue that an overt act of taking life repels civilized human beings is to be commended and encouraged as the reverence for human life or even for just a moment of human life is one of the great contributions of our civilization. CONCLUSION As an orthodox Jew, I feel that divinely inspired guidelines that have stood the test of centuries shape my beliefs, and such guidelines contradict medical aid in dying. I cannot speak to the viewpoint of those who do not access religion in defining their moral stance, nor do I implicate them in the current bioethics' trends, as I am not aware of the personal role of religion in the lives of most such authors. While many nonreligious people have a firm philosophical grounding and oppose medical aid in dying, I suggest that in the absence of any religious or other absolute standards, developing logically defensible ethical guidelines may be challenging. At the least, religion may play a role in defining the points on the continuums that are ethically meaningful and refuting the trending beliefs that if the endpoint is the same, allowing different methods of arriving at that end are somehow ethically equal. The continuum of ways death may result does not negate analysis of whether death is brought about in ways that recognize the importance of life. The German philosopher Hans Jonas said, "It is a question whether without restoring the category of the sacred, the category most thoroughly destroyed by the scientific enlightenment, we can have an ethics able to cope with the extreme powers that we possess today and constantly increase and are compelled to use."[9] While countries vary on the role of religion in policy, with many emphasizing freedoms of religion, a recent position paper released by a group of Jewish, Christian, and Moslem leaders suggested the need for agreement on the unique sanctity of human life.[10] I would recommend that such a document serve as an example of consensus on critical foundational bioethical guidelines for democratic secular societies. - [1] Alexander L Medical science under dictatorship. New England Journal of Medicine, 241, p39-47 DOI10.1056/NEJM194907142410201 [2] Lederberg J. A geneticist looks at contraception and abortion, Annals of Internal Medicine 67, sup 2, 25-27. https:/doi.org/10.7326/0003-4819-67-3-25 [3] Ibid. [4] Editorial, Sociology: Logic of biology. Nature 220, 429 https://www.nature.com/articles/220429b0 [5] Giublini A Minerva F After-birth abortion: why should the baby live. J Med Ethics 39, 261- [6] Rachels J Active and passive euthanasia. New England Journal of Medicine 292, 78-80 [7] Ibid. [8] Cohen-Almagor R Euthanizing people who are "tired of life". in Euthanasia and Assisted Suicide-Lessons from Belgium. Ch 11 of Euthanasia and Assisted Suicide, Cambridge University Press pp173-187. 2017 and DOI; https://doi.org/10.1017/9781108182799.012 [9] Hans Jonas, Technology and Responsibility: Reflections on the New Tasks of Ethics, 1972, found as Chapter IX, Philosophical Essays, 1980. https://inters.org/jonas-technology-responsability [10] A position paper of the Abrahamic Monotheistic religions on matters concerning the end-of-life. Vatican Press 28 October 2019 https://press.vatican.va/content/salastampa/en/bollettino/pubblico/2019/10/28/191028f.html. (shrink)

This book is intended as a practical introduction to the ethical problems which doctors and other health professionals can expect to encounter in their practice. It is divided into three parts: ethical foundations, clinical ethics, and medicine and society. The authors incorporate new chapters on topics such as theories of medical ethics, cultural aspects of medicine, genetic dilemmas, aging, dementia and mortality, research ethics, justice and health care (including an examination of resource allocation), and medicine, ethics and medical law. Medical (...) Ethics also covers issues having to do with the beginning and end of life, as well as ethical questions surrounding the human body and the use of human tissue, confidentiality and AIDS, care of the mentally ill, and the implications of genetic technology. Each chapter presents a range of ethical views, drawing both from traditional philosophy and the most recent contemporary trends. The theoretical discussion is extended and illustrated by case studies and examples. This book is a non-technical guide to ethics written with the needs of medical students and medical practitioners in mind. It will also appeal to students and practitioners of allied health professions, and for all users of health care services. (shrink)

Recently a number of AIDS/AZT research studies, carried out by U.S. universities, have come under intense ethical scrutiny. In these studies, control groups of HIV-positive pregnant women were being given a placebo rather than AZT. Such research protocols would be illegal if practiced in the U.S. I examine a number of lamentable ethical lapses in the studies, and conclude that at least some of these ethical problems are traceable to a troubling contradiction between differing international codes of ethics. In a (...) word, some international codes mandate that all research subjects (including control groups) receive the best standard of care available in the country sponsoring the research, while others suggest that providing only a “Iocal” standard of care is ethically appropriate. I argue that these two ethical mandates cannot both be satisfied, and that host country populations will remain subject to exploitation unless this contradiction is resolved. (shrink)

The principle of individual medical confidentiality is one of the moral principles that Africa inherited unquestioningly from the West as part of Western medicine. The HIV/AIDS pandemic in Southern Africa has reduced the relevance of the principle of individual medical confidentiality. Individual medical confidentiality has especially presented challenges for practitioners among the Bantu communities that are well known for their social inter-connectedness and the way they value their extended family relations. Individual confidentiality has raised several unforeseen problems for persons living (...) with HIV/AIDS, ranging from stigma and isolation to feelings of dejection as it drives them away from their families as a way of trying to keep information about their conditions confidential. The involvement of family members in treatment decisions is in line with the philosophy of Ubuntu and serves to respect patients’ and families’ autonomy while at the same time benefiting the individual patient. (shrink)

South African writer Phaswane Mpe (1970—2004) is often canonized and memorialized as a brave truth-teller who broke the silence on HIV/AIDS in the context of government silence and denial. And yet Mpe’s writings—including poetry, short stories, a novel, and scholarly criticism—contemplate illness as a problem for truth and representation in works that linger in silence and ambiguity. This article analyses the tension between silence and speech in Mpe’s creative writing in response to HIV/AIDS. Using Mpe’s works as an illustrative example, (...) I trouble the desire to read illness narratives as forms of truth-telling and silence-breaking. The desire for the transparency of speech in a global archive of illness narratives also informs a colonial politics of representation that instrumentalizes literature as ethnographic evidence. Mpe’s writing on HIV/AIDS refuses a demand for authenticity by holding the embodied experience of disease at a slight remove from the reader in order to register the forms of spiritual and epistemological crisis that epidemic and social loss produce. My contention is that the political stakes of this writing lie not in Mpe’s ability to render a public health crisis with verisimilitude, but in the capacity for writing to provide solace and sublimity faced with death. Through an analysis of Mpe’s fiction and poetry, this article proposes a methodology for reading the politics of illness narratives across globalized space which attends to the world-building potential of creative expression as a radical practice that resists incorporative models of aesthetic intelligibility. (shrink)

This paper critically examines the implications of state efforts to expand prescriptive authority of pharmacists, which will allow them to prescribe various types of hormonal contraceptives. With this expansion, women no longer need to see a physician before being prescribed such contraceptives, but instead, they must answer self-assessment questionnaires at the pharmacy to ensure that their chosen method is safe and appropriate. This paper argues that while these measures to expand pharmacists’ prescriptive authority will surely meet the stated goal to (...) increase access to hormonal contraceptives, the measures may have detrimental consequences that have largely been downplayed. Studies consistently show that the OB-GYN is a significant primary care provider identified by young female patients, and some of the main reasons provided by these young women for going to the OB-GYN is to discuss, or obtain a prescription for, contraceptives. Through the expansion of pharmacists’ prescriptive authority, a likely consequence is that some women will relinquish going to the OB-GYN. However, the OB-GYN provides important services beyond contraceptives, such as preventive screenings for hypertension, cardiovascular diseases, alcohol abuse, mental health, etc., and there is evidence supporting both the effectiveness and cost–benefits of these interventions. By increasing access to contraceptives, the likely result is that many women will have less interaction with a physician and will receive fewer preventive screenings. I do not wish to suggest that these bills should not pass, nor that OB-GYNs should hold contraceptives hostage, only that there are consequences to expanded prescriptive authority that must be anticipated. Further, expanding prescriptive authority obscures the real problem: some individuals have trouble accessing the health care system, not merely trouble accessing hormonal contraceptives. The expansion of prescriptive authority to include contraceptives applies a Band-Aid to treat one aspect of this problem. What is needed is not merely expanded access to hormonal contraceptives, but better access to health care in general. (shrink)

In the past twelve to eighteen months, another perceived threat to the safety of America's blood supply has arisen. The fear is that Creutzfeldt-Jakob disease will join hepatitis, HW and AIDS in the public and medical consciousness as the 1990s next infectious disease epidemic. A particular kind of ethical dilemma has arisen causing much debate and consternation for hospitals, regulators, and blood suppliers, and has elicited a remarkably varied response.CJD is a rare but uniformly fatal neurological disease: it affects the (...) brain and the rest of the central nervous system. Its incidence in the population of the developed world is about one per million per year, although some geographic anomalies exist. CJD manifests itself in two broad ways. First, the disease is associated with symptoms of mental deterioration and dementia, including memory loss, anxiety, and cognitive impairment. Second, CJD is also associated with a range of neurological symptoms, including muscle rigidity, seizures, tremors, muscle twitching, and spasticity, as well as problems with muscle coordination and unsteady gait, sometimes resulting in total disability. (shrink)

Demander une assistance médicale à la procréation, recourir à l'avortement pour des raisons diverses, contrôler après coup une conduite sexuelle à risque par une pilule du lendemain, et bientôt peut-être exiger d'être euthanasié : depuis que l'État s'est engagé dans un processus de dépénalisation de ces pratiques médicales, on peut aujourd'hui faire beaucoup de choses de son propre corps quand il s'agit du début ou de la fin de vie. Cette liberté s'exerce néanmoins à une condition, toujours la même (...) : se présenter devant un médecin. Et que vous demande ce médecin? Presque rien, semble-t-il. Il vous demande de vous asseoir et de parler de votre état, de votre demande. Bref, de ce qui vous amène là. C'est ce " presque rien " dont il est question dans cet ouvrage. Un " presque rien " qui révèle, en réalité, un nouveau système de surveillance dans lequel le médecin prodigue informations et conseils à un sujet jugé désormais capable de prendre seul des décisions souveraines en matière de vie et de mort. Un face-à-face où apparaît le malaise de ceux qui assument la délicate mission de recueillir l'expression du désir ou de la détresse. À partir d'une longue enquête dans le secret des cabinets médicaux, l'auteur explique comment la régulation juridique a laissé place à des formes de pouvoir beaucoup plus sophistiquées, un dispositif souple de gouvernement des conduites qui laisse toute sa place à l'autocontrôle et à l'intériorisation par les individus des normes sociales. Elle montre ainsi comment, du cabinet du praticien jusqu'au Comité consultatif national d'éthique, c'est une nouvelle administration du vivant qui se met en place. (shrink)

« Un soin inédit fait nouvellement partie de l’arsenal thérapeutique de la médecine occidentale. Presque un oxymore, l’aide médicale à mourir ne fait pas l’unanimité. Or, une nouvelle frontière est sur le point d’être transgressée. Parce que certains font l’erreur de considérer la perte de dignité comme possible, ils mettent de l’avant la mort comme le remède ultime aux souffrances des gens atteints de démence. On oublie alors que cette sensation de déchéance peut être soignée autrement. De plus, (...) nous démontrons que la défense de l’autonomie ne saurait justifier l’euthanasie en démence. Notre manifeste confirme également l’importance d’en finir avec la peur du centre d’hébergement et de soins de longue durée (CHSLD). Ainsi, la fragilité de l’aîné souffrant de démence doit être célébrée en tant que richesse oubliée pour promouvoir une telle modification des mœurs au sein des établissements en cause. Notre réflexion contre l’euthanasie en démence, appuyée par de nombreux cliniciens, contribue à la protection des aînés vulnérables. »--. (shrink)

Commentary on the film, Tout s’est bien passé, by François Ozon, which tells the story of a person who wants to exercise his wish to die in the context of assisted suicide/euthanasia. The action takes place in France and shows the impact on the relatives.

In lieu of an abstract, here is a brief excerpt of the content:Advocates, Not Problem ParentsAnonymous TwoNothing could have prepared us for the shock of hearing that our son had a brain tumor.Rob* was 13½, an active, healthy eighth grader, when he developed a headache so bad he couldn’t get out of bed in the morning. We saw the pediatrician three times over the next ten days. On the third visit, after ruling out problems at home, stress at school, strep (...) throat and mono, he sent us for an MRI. When the radiology tech handed me the films and told us to drive back to the pediatrician’s office, I knew we were in trouble. Sure enough, after all the other patients had left, our long–time doctor called us into his tiny office, shut the door and fumbled with the films as he pointed to a white spot that he said was a brain tumor.So began the experience that would change the course of our lives. We remember the diagnosis in detail and relive it in slow motion. We recall packing suitcases, driving to the hospital, waiting to be seen in the emergency room, and walking through doors marked “Pediatric Hematology/Oncology” for the first time.We date everything “BC” (Before Cancer) or “AD” (After Diagnosis). We are grateful every day that [End Page 13] our son is alive, but we know he is forever changed. We are changed: Our nuclear family, our extended family, everyone who knew us and supported us at the time was affected. A pediatric cancer diagnosis is a bomb that shatters your world without warning. If you’re lucky, you can pick up a lot of the pieces, maybe even most of them, but the world you re–enter is never the one you inhabited before.Our doctor delivered the diagnosis to Rob and me at the same time. I’ve thought about this many times and perhaps one day will ask him: Why did he choose to do it that way? Was it a conscious decision or just happenstance? Was it kinder, in the long run—like pulling off a band–aid quickly—or terribly risky? What if I had collapsed at the news? I asked to step into the hall to use the phone. In a state of numbness, I called my husband. He knew we had had an MRI a few hours earlier. “Come quickly,” I said. “There’s a mass.”We chose to go to a top-ranked major medical center and were admitted that evening. A couple of days later, the discovery of tumor markers in Rob’s cerebrospinal fluid and blood confirmed a central nervous system mixed germ cell tumor. We were told he would require six cycles of chemotherapy, followed by six weeks of radiation, and possibly second–look surgery and high-dose chemo with stem cell rescue on top of that. We were given a consent form listing a catalogue of short–and long–term side effects, among them the likelihood of infertility. We were urged to start treatment as soon as possible.By sheer coincidence I had just completed a project for a small, nonprofit organization that existed to inform young adult cancer patients about their fertility rights and options. I knew that infertility concerns were usually pushed aside at diagnosis to make way for other priorities, namely the urgency of starting treatment. And that’s exactly the kind of pressure we were facing.But my husband and I were not ready to sign away our son’s fertility in what felt like a no–confidence vote, a capitulation. We needed to believe that he would survive and put this horror behind him, that he would look forward to marriage and starting a family. We were willing to cede nothing to the disease at this early stage of the game. Was this rational, naive or selfish on our part? I don’t know.The medical team seemed surprised when we asked for a delay in treatment in order to collect sperm samples. They warned that our son’s condition could decline suddenly—and that postponing treatment by even several days might be dangerous. However, at our insistence, they agreed to the delay... (shrink)

Plusieurs de ceux qui présentent des problèmes de santé mentale se retrouvent dans le système judiciaire. Leur profil clinique se caractérise par une problématique complexe où se juxtaposent divers troubles ou déficits. Il n’est pas toujours facile de dépister ces personnes et d’intervenir auprès d’elles dans le cadre du processus judiciaire et pénal, qui n’est pas conçu pour répondre à leurs besoins cliniques. De son côté, le réseau de la santé et des services sociaux semble lui aussi peu adapté pour (...) intervenir auprès de cette clientèle marginale, souvent réfractaire à l’aide et parfois intimidante. Ces deux réseaux fonctionnent en parallèle, très peu familiers l’un de l’autre. Ils ont tendance à se renvoyer cette clientèle problématique. L’État doit s’assurer de soutenir et de coordonner des services qui peuvent rejoindre et aider ces personnes. (shrink)

Midrash Genesis Rabbah takes aim at a variety of ideological adversaries, but the most subtle polemic is directed at sages who went beyond standard hermeneutical practices to embrace mystical approaches to Torah learning. This essay seeks to expose the use of satire and other literary forms of critique among passages treating cosmology and Torah study. Analytic tools developed by Pierre Bourdieu, especially as they pertain to exposing the use of the symbolic language intrinsic to the establishment of systems of social (...) authority, will be employed to delineate the ideological conflict among sages developing diverse approaches to ascending the religious hierarchy within early rabbinism. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bearing the Other and Bearing Sexuality: Women and Gender in Levinas’s “And God Created Woman”Deborah Achtenberg (bio)Much ink has been spilled on the question of the role of women for Levinas’s ethics in accounts containing a gamut of claims, from Stella Sandford’s that woman is aligned with sexual difference in such a way that Levinas’s attempts to install her within the human fail,1 to Diane Perpich’s that one reason (...) Otherwise than Being is preferable to Totality and Infinity is that the ethics in the former does not rest on a failed narrative of family life and woman’s role in it as ethics does in the latter,2 to Claire Katz’s that there is a rich, positive ethical component to women’s role for Levinas since he uses maternity as an example of being-for-the-other.3This essay complements those accounts by giving a detailed analysis of the discussion of women in Levinas’s talmudic commentary, “And God Created Woman.”4 Specifically, I ask whether Levinas is right, in his commentary, that, according to Talmud Berakhot 61a, women are not ultimately inferior to men because both men and women are human and their humanity precedes the division of humanity into male [End Page 137] and female. I pursue the question by reading the talmudic passage the way Levinas, in his commentary, tells us that we should read Talmud, namely, by situating texts quoted in it in their broader textual context in Torah rather than treating them as proof texts.When I put quotations cited in Berakhot 61a in their textual context, I find that the male figures treated in the texts from Torah are dismayingly dismissive of women in distress, suggesting that women are treated as inferior, but then learn their mistake and treat the women as equal or even superior, suggesting that Talmud does see them as having a humanity that precedes sexual difference. Nonetheless, I go on to argue, though the talmudic passage does not see women as ultimately inferior to men, it nonetheless treats them as inferior on the day-to-day level and such treatment belies the attempt to treat them as human.I go on to ask about Levinas’s stance toward this problem in the talmudic text, Does he accept the treatment of women as inferior? I argue, to the contrary, that Levinas sees the problem and attempts to overcome it by criticizing two ways the talmudic passage treats women as inferior on the day-to-day level: he rejects the passages’ prohibitions on certain types of male contact with women—such as looking at them!—and he reinterprets its association of women with makeup and deception. His stance is more complicated, though, because he goes on to find a kernel of truth to preserve in each of the problematic talmudic positions: in the first, the fundamental ethical ambiguity of sexuality, since sexuality points toward the other as other but also toward one’s own satisfaction; in the second, what we might anachronistically call women’s ways of knowing that, for Levinas, have a certain ethical superiority over the ways men know. The two resolutions have their own problems, I maintain, since if Levinas is to avoid gender norming and gender hierarchy, he needs to make it clear that both the problematic ethical ambiguity of sexuality and also the ways of knowing he thinks are ethically superior are not essentially associated more with women than with men. [End Page 138]1Reading Levinas’s way, I search out the context of quotations, taking them not as proof texts, but as invitations to interpret. In “And God Created Woman,” he says, “each time a biblical verse is brought in as proof it is not likely that the sages of the Talmud are looking in these texts, squeezed every which way in spite of grammar, for a direct proof of the thesis they are upholding. It is always an invitation to search out the context of the quotation” (NT 166/DSS 130–31). As a feminist, when I search out the context of the quotations Levinas refers to in his reading of Berakhot 61a, I... (shrink)

This chapter addresses the greatest fear about divine commands – that God may command something evil – focusing on a modernized version of Genesis 22, in which Abraham finds it difficult to reject any of the following jointly incompatible beliefs: whatever God commands is not morally wrong to do, God commands me to kill my son as a sacrifice, such human sacrifice is morally wrong. It argues that divine command theorists should not reject but that in any cultural and religious (...) context in which the dilemma can be taken seriously, is the belief to reject. (shrink)

Robert Adams gives a comprehensive philosophical account of a theistically-based framework for ethics. He draws on over twenty years of his published work to create this overarching framework, which is based upon the idea of a transcendent, infinite good, which is God, and its relation to the many finite examples of good in our experience. In giving this account, Adams explores ways in which a variety of philosophically unfashionable religious concepts can enrich the texture of ethical thought.

Leibniz held that even if we had no proof of the possibility premise of the ontological argument, a presumption would justify accepting it. He had an extensive theory of presumptions, as a part of practical philosophy, originating in his jurisprudence. He even proposed a formal proof that presumption favors possibility. This chapter examines ways of trying to overcome the difficulty that in the case of a necessary being, where possibility of existence and possibility of nonexistence exclude each other, presumptions of (...) possibility seem to cancel each other out, but concludes that prospects of escape from the problem are not promising. (shrink)

New Foundations with Urelements (NFU) is a theory that extends Quine’s original theory (New Foundations) by adding “urelements” (atoms). It was discovered by Jensen in 1969, who proved that NFU is relatively consistent with Peano arithmetic and consequently with Zermelo–Fraenkel set theory (ZF). Jensen’s proof is rather hard to follow, so Boffa introduced a more straightforward method of constructing models for NFU from a model of ZF. However, Boffa’s presentation of his construction is extremely terse with many essential details omitted, (...) since he probably only wanted to emphasize the differences from Jensen’s construction. Our main goal is to elaborate on this construction in great detail, and also to prove that the said construction yields some results that are either not present in the contemporary literature, or are accepted as true at face value. Namely, besides proving that this construction gives a model for NFU, we will also use it to define models for NFU with the Axiom of Infinity, NFU with the Axiom of Choice, and NFU with both of those axioms. (shrink)

RESUMEN: A lo largo de 100 años, la constitución mexicana de 1917, se ha ido adecuando a los nuevos tiempos, circunstancias y exigencias de la sociedad, ampliándose sus derechos fundamentales, fortaleciéndose los mecanismos para su defensa, y ajustándose la relación entre el Estado y una sociedad plural, diversa y compleja. Sin embargo, en esta trayectoria el texto constitucional no ha estado exento de claroscuros motivados por las constantes reformas que ha sufrido en las últimas dos décadas. Esta conmemoración es una (...) excelente oportunidad de mirar al pasado para revalorar los orígenes del pacto social.ABSTRACT: Over 100 years, the Mexican constitution of 1917, has been adapting to the new times, circumstances and requirements of society, expanding their fundamental rights, strengthening mechanisms for their defense, and adjusting the relationship between the State and a plural, diverse and complex society. However, on this path the constitutional text has not been without of chiaroscuro motivated by constant reforms that has suffered in the last two decades. This commemoration is an excellent opportunity to look to the past to revaluate the origins of the social pact.PALABRAS CLAVE: constitucionalismo mexicano, pluralidad, Estado, gobierno dividido, sistema político. KEYWORDS: Mexican constitutionalism, plurality, State, divided government, political system. (shrink)

The ‘universal cell reaction’ (UCR), a coordinated biphasic response to external (noxious and other) stimuli observed in all living cells, was described by Nasonov and his colleagues in the mid‐20th century. This work has received no attention from cell biologists in the West, but the UCR merits serious consideration. Although it is non‐specific, it is likely to be underpinned by precise mechanisms and, if these mechanisms were characterized and their relationship to the UCR elucidated, then our understanding of the integration (...) of cellular function could be improved. As a step towards identifying such mechanisms, I review some recent advances in understanding cell mechanics and the stress response and I suggest potentially testable hypotheses. There is a particular need for time‐course studies of cellular responses to different stimulus doses or intensities. I also suggest a correspondence with hormesis; re‐investigation of the UCR using modern biophysical and molecular‐biological techniques might throw light on this much‐discussed phenomenon. BioEssays 29:324–333, 2007. © 2007 Wiley Periodicals, Inc. (shrink)

This manuscript provides a review of the potential role of newborn genetic testing for autism, and whether the state has an inherent responsibility to facilitate and subsidise this. This is situated within the broader construct of benefits and limitations of genetic testing currently. Potential benefits of such presymptomatic genetic testing include facilitating earlier diagnosis and access to appropriate intervention which can improve the treatment outcome for the child and indirectly benefit caregivers and society by reducing the care needs of the (...) child and adult in future. However, there are several limitations to newborn genetic testing including the variable penetrance of ‘autism-risk’ genes, marked phenotypic heterogeneity of autism, real-world limitations in access to treatment, potential psychological harm to caregivers and financial considerations. We hence argue for facilitation of diagnostic genetic testing instead, especially for parents who seek to have greater understanding of recurrence likelihoods, related to reproductive decision-making. Facilitation of such testing can be in the form of both financial subsidies and infrastructural elements including availability of testing facilities and trained healthcare personnel for individualised pregenetic and postgenetic test counselling. (shrink)

Qui n'a souvenir de la grande palabre sur la philosophie africaine? Paulin Houtondji, Marcien Towa, Eboussi Boulaga, Niamkey Koffi et bien d'autres y ont valablement laissé du leur au point de s'imposer aujourd'hui comme des références incontournables de la philosophie d'Afrique. On est parfois tenté de songer à la fin de l'activité philosophique chez les Africains avec ceux-là. C'est justement à cette éventuelle fin que refusent de souscrire aussi bien le philosophe congolais Claver Boundja que l'équipe de jeunes philosophes ayant (...) tous pour ambition "de réouvrir à nouveaux frais le débat sur le développement en Afrique". L'à-propos quant à l'absence métathéorique que la théorie du développement de Boundja vient combler dans la philosophie contemporaine fait l'unanimité parmi les contributeurs. En outre, la théorie philosophique du développement de Boundja se démarque de la conception marxiste de celle-ci, dans la mesure où Boundja ancre la pensée philosophique fondamentale de type métaphysique dans la question du développement humain. Elle s'émancipe du volet socio-économique avec ses pesanteurs sociohistoriques pour interroger le bien-être non calculé de l'humain. Dans une herméneutique circonstanciée, les auteurs examinent le développement non pas en confinant celui-ci aux vues de Boundja, mais en l'ouvrant aux interrogations sur l'humain et ses conditions ou ses possibilités de réalisation de vie épanouie. C'est pourquoi Boundja est tantôt questionné, tantôt exploré comme atelier pour l'émancipation féministe, tantôt encore mis en dialogue avec Ebenezer Njoh-Mouellé, V.Y. Mudimbe non sans évoquer en filigrane, Amartya Sen, Martha Nussbaum, etc."--Page 4 of cover. (shrink)

In this article, I examine the marginalisation and abjection of strongwilled and assertive women in Dagaaba settings in rural north-western Ghana. This is done by paying attention to a local identity category known as pog gandao—‘a woman who is more than a man’. The pog gandao, or what I gloss as the wilful woman, concept is used by men and women locally to stigmatise hard-working and assertive Dagaaba women. Drawing inspiration from the reappropriation and redeployment of queer abjection for the (...) subversion of homophobia and the violence of compulsory heterosexuality, I demonstrate how such naming or shaming into the position of a pog gandao serves to hamper initiatives by enterprising and talented Dagaaba women. Being labelled as pog gandao, it appears, is even to lose one’s status in normative gender presentation as a woman; it means to transcend into a realm beyond the masculine. But this transcendence is not enviable due to its potential to expose the subject in question to perceived supernatural harm, a serious matter in this cultural context whereby the world of human affairs is understood as thoroughly saturated with supernatural forces that structure daily and ritual comportment. I argue that the shaming interpellation of pog gandao works as the most powerful weapon against wilful women in oppressive male-centric institutions of the Dagaaba. And yet, this stigmatised interpellation also has great emancipating potential, and I conclude by exploring ways to reclaim it for undermining female subordination, and for both empowering women and for feminist politics. (shrink)

"Aristotle was a systematic writer who often cross-referred to the definitions of terms given elsewhere in his work. Book 5 of the Metaphysics is important because it consists of definitions of the main uses of key terms in Aristotle's philosophy, and it is extremely valuable to have a commentary on this important text by Alexander of Aphrodisias, the leading commentator of his school. Alexander provides a detailed commentary on all of the thirty terms analysed in Book 5, weighing alternative interpretations (...) of what Aristotle says one against another, defending Peripatetic views against actual and possible criticisms, and attempting to integrate what is said in Book 5 into the context of the Metaphysics as a whole."--Bloomsbury Publishing. (shrink)

This article maps the complex trajectory of the rapport between art and politics in Alain Badiou’s work. While Badiou’s commitment to thinking through the significance of art and politics has not altered in the course of his career, the relationship he proposes between these conditions has been subject to revisions and vicissitudes. We will begin with a reading of Badiou’s first published philosophical work where, in opposition to other Marxist thinkers of his milieu, Badiou severs or desutures art from politics. (...) Later on, however, he recognises that the truths produced by art and those produced by politics must be brought in dialogue and may indeed be seen as co-respondent or compossible. Finally, in his latest major work, Badiou revives the rapport between art and politics as a consequence of this compossibility, and goes on to even fuse the artistic with the political in his account of cinema. (shrink)

The integration of artificial intelligence (AI), particularly large language models (LLMs) like OpenAI’s ChatGPT, into clinical research could significantly enhance the informed consent process. This paper critically examines the ethical implications of employing LLMs to facilitate consent in clinical research. LLMs could offer considerable benefits, such as improving participant understanding and engagement, broadening participants’ access to the relevant information for informed consent and increasing the efficiency of consent procedures. However, these theoretical advantages are accompanied by ethical risks, including the potential (...) for misinformation, coercion and challenges in accountability. Given the complex nature of consent in clinical research, which involves both written documentation (in the form of participant information sheets and informed consent forms) and in-person conversations with a researcher, the use of LLMs raises significant concerns about the adequacy of existing regulatory frameworks. Institutional Review Boards (IRBs) will need to consider substantial reforms to accommodate the integration of LLM-based consent processes. We explore five potential models for LLM implementation, ranging from supplementary roles to complete replacements of current consent processes, and offer recommendations for researchers and IRBs to navigate the ethical landscape. Thus, we aim to provide practical recommendations to facilitate the ethical introduction of LLM-based consent in research settings by considering factors such as participant understanding, information accuracy, human oversight and types of LLM applications in clinical research consent. (shrink)