Over the past few decades, autonomy has become a core value in our societies, enshrining the will of patients as a premise for access to front-line care and services. Thus, in the case of patients refusing home care, the willingness to participate in an assessment often takes precedence over the needs identified by caregivers, however compelling they may be. For the gerontopsychiatric patient, this organizational position can lead to several pitfalls, and even risky or dangerous situations. Indeed, the refusal of (...) care and services among seniors, frequently associated with self-neglecting behaviours, can lead to clinical deterioration, hospitalization or even death. It is therefore essential to examine the motivations behind the choices made by seniors and to adapt the approach of caregivers to these situations. Consent to care is a dialogical process that must include an explanation of the risks in the event of refusal. Access to care must not be automatically limited when there is the slightest opposition, without first engaging in further reflection. This article describes why concrete solutions must be actively sought to nuance the understanding and application of the values of autonomy and protection for seniors in the healthy provision of care and services, even more so for the vulnerable patient who is aging and suffering from psychic symptoms. (shrink)

The historical context of mental health care in Quebec, which in recent years has given way to greater client participation in the decision-making process for which they are concerned, has reversed the previous medical conception of psychiatry. From a vision of internment, care is now adapted to the individual needs of the clientele served, even including the provision of care in the home. However, work with people weakened by mental illness is often fraught with questions and sometimes contradictory ethical issues. (...) Intensive follow-up teams in the community are a case in point. Working with a very vulnerable clientele, health workers must know how to be open and flexible in order to establish a therapeutic relationship with a clientele that is often involuntary and refractory to any form of treatment. To achieve this, they often have to get past refusals to follow-up by using various strategies derived from libertarian paternalism in order to maintain contacts that will become meaningful and allow these individuals to regain control over their lives. This sometimes-intrusive approach obviously raises its share of ethical issues, particularly regarding consent to care, and can be perceived as an infringement of fundamental rights by infringing rights to self-determination and decision-making autonomy. However, it is possible to reverse this position through a benevolent approach supported by an ethics of care that favours respect for the uniqueness of each individual by placing them at the heart of the therapeutic relationship. It is through dialogue, the place given to the other, respect for their choices, uniqueness and self-determination that it will then be possible to seek implicit consent and active participation of the user in the recovery process, even if sometimes there are binding legal measures. (shrink)

Lorsque l’éthique est abordée dans le milieu de la santé, plusieurs questions relatives à l’autonomie du malade sont posées. Dans cet article, nous présentons les relations pouvant exister entre trois concepts différents : les soins palliatifs, le respect de l’autonomie et la dignité du malade. Ensuite, il sera question de la particularité des soins palliatifs chez les aînés ainsi que des acteurs pouvant prendre part au processus décisionnel concernant les choix de traitement. Le principe d’autonomie dans cette situation (...) de soin amène à se questionner sur le rôle de chacune des personnes accompagnant le malade dans ses choix. Enfin, nous terminerons en proposant quelques pistes de réflexions concernant l’exercice de l’autonomie décisionnelle dans le contexte spécifique de la pratique en soins palliatifs auprès d’une population âgée. (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)

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 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-advi sory-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-me dical-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-1.67695 04. [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'apport des femmes à la production des soins revêt un caractère essentiel et universel tant dans l'histoire que dans la société actuelle, selon deux axes d'articulation : la protection du corps et le soutien par l'entraide et l'accompagnement. Les orientations actuelles des systèmes de santé occidentaux, comprenant une promotion idéologique de l'autonomie ayant pour conséquence la déqualification de certaines valeurs, notamment celle de l'interdépendance, compromettent l'avenir des soins dans la mesure où il n'existe pas de soin sans (...) l'existence simultanée de la dépendance et de l'interdépendance. Le soin représente une forme de rituel d'accompagnement dans les passages de la vie, un travail de médiation.Women's contribution to care production has been in the past, and remains in society today, of an essential and universal nature, regarding two principal concerns : care for the body and support through mutual aid and accompaniment. The current orientation of western healthcare systems, including an ideological promotion of autonomy that results in a diminishment of certain values, especially those of interdépendance, compromise the future of care to the extent that there is no care without the simultaneous existence of dépendance and interdépendance. Care represents a sort of ritual of accompaniment in life's passage, a work of mediation. (shrink)

Children's autonomy includes, as far as possible, self-determination, bodily integrity and the right to influence outcomes. Limits to bodily integrity, which involves no touching without the child's consent or tacit agreement, are discussed. The clinical, legal and ethics literature tends to agree that children may give valid consent to major recommended treatment from around 12 years but may not refuse it until they are legal adults. Research shows that young children are more aware of their bodily integrity and autonomy, of (...) morality and decision making, than was assumed in the past. Adults therefore need to inform children and respect their initially instinctive efforts to protect their bodily integrity. Unlike assent, consent involves patients being adequately informed and being able to accept or refuse proposed treatment. Reasons are given for adults’ need to consult with children when determining their best interests. Beyond words, giving or withholding consent also involves emotions of fear, trust and courage, besides embodied reactions of cooperating with treatment or resisting it, in which young children actively engage. Some clinicians work with the informed cooperation of young children who need lifesaving treatment, and at times accept their refusal. Reasons for differences between mainstream experts’ views and clinical practices are considered. (shrink)

Physicians generally recommend that patients resuscitated with naloxone after opioid overdose stay in the emergency department for a period of observation in order to prevent harm from delayed sequelae of opioid toxicity. Patients frequently refuse this period of observation despiteenefit to risk. Healthcare providers are thus confronted with the challenge of how best to protect the patient’s interests while also respecting autonomy, including assessing whether the patient is making an autonomous choice to refuse care. Previous studies have shown that physicians (...) have widely divergent approaches to navigating these conflicts. This paper reviews what is known about the effects of opioid use disorder on decision-making, and argues that some subset of these refusals are non-autonomous choices, even when patients appear to have decision making capacity. This conclusion has several implications for how physicians assess and respond to patients refusing medical recommendations after naloxone resuscitation. (shrink)

« La fin du SIDA » prévue en 2030 par le plan 90-90-90 de l’ONUSIDA est-elle possible au Québec? L’offre universelle proportionnée et systématique de dépistage avec consentement opt-out (consentement présumé) apparait comme la politique sanitaire la plus pertinente et équitable à mettre en place en vue d’identifier les personnes vivant avec le VIH ignorant leur statut sérologique. Cette démarche à première vue contraignante vis-à-vis des libertés individuelles peut être largement compensée par des bénéfices sanitaires, sociaux, économiques et structurels (...) à l’échelle individuelle et populationnelle. Dans la mesure où le VIH/SIDA reste un révélateur puissant des inégalités sociales, cette approche ne sera prolifique qu’en présence d’une ambition politique d’amélioration de l’accès aux soins et de couverture sanitaire universelle et inclusive à l’égard des individus échappant au dépistage. L’approche opt-out au sein des groupes à forte prévalence est une stratégie éthiquement pertinente pour augmenter les taux de dépistage. Bien que le consentement n’y soit pas explicite, la présomption tiendrait compte de « l’injustice structurelle » auxquels les groupes clés – présentant de forts taux de prévalence – sont soumis initialement. Cette dernière est responsable de leurs difficultés d’accès aux soins et aux dépistages. Cet article propose d’uniformiser l’offre de dépistage. Le Comité des Infections Transmissibles Sexuellement et par le Sang du Québec recommande actuellement l’approche opt-in pour les groupes-clés et le consentement opt-out en population générale. Nous pensons que cette différenciation constitue une barrière dans l’accès au dépistage et produit un effet d’éviction des groupes-clés craignant la stigmatisation. (shrink)

In many jurisdictions, adolescents acquire the right to consent to treatment; but in some cases their refusals – e.g. of life-saving treatment – may not be respected. This asymmetry of adolescent consent and refusal seems puzzling, even incoherent. The aim here is to offer an original explanation, and a justification, of this asymmetry. Rather than trying to explain the asymmetry in terms of a variable standard of competence – where the adolescent is competent to consent to, but not refuse, certain (...) interventions – the account offered here focuses more closely on the normative power to render actions permissible. Where normative powers are shared they can readily give rise to an asymmetry between consent and refusal. We then turn to why it is justifiable that normative powers be shared in adolescence. Transitional paternalism holds that the acquisition of normative powers by competent adolescents should not be an instant one, achieved in a single step, but that there should be a transitional period where paternalistic protection is rolled back, but not entirely withdrawn until a later date. Transitional paternalism could be implemented without generating the asymmetry between consent and refusal but, it is argued, the asymmetric version of transitional paternalism is to be preferred insofar as it offers a greater respect for the adolescent's decisions than the symmetrical alternative. (shrink)

L’objectif de cet article est de construire à partir d’une reprise de certaines thèses de Michel Henry les premiers jalons d’une phénoménologie radicale du soin. Sur base d’une interrogation sur le rapport entre le souffrir originaire de la vie et son mouvement immanent d’ipséisation, l’auteur montre qu’en refusant toute forme de naturalisation du consentement du pâtir de la vie à lui-même, la phénoménologie radicale de Michel Henry permet de développer une nouvelle approche du soin, notamment du point de vue de (...) son rapport à la dimension originairement intersubjective du désir de s’éprouver de la vie. L’article se termine par une réflexion sur la dimension potentialisante d’un certain usage des rôles dans le rapport de l’acte médical à la singularité radicale de l’individu souffrant. Dans la perspective d’une phénoménologie radicale de la vie, l’acte médical ne peut pas être seulement décrit comme reposant sur l’adhésion des individus à la vie. Il est plus profondément encore amené à accroître par sa façon même de s’effectuer l’adhésion intérieure des individus au pâtir radical de leur vie. (shrink)

This contribution deals with the issue of the professional autonomy ofthe medical doctor. Worldwide, the physician's autonomy is guaranteedand limited, first of all, by Codes of Medical Ethics. InItaly, the latest version of the national Code of MedicalEthics (Code 1998) was published in 1998 by the Federation ofprovincial Medical Associations (FnomCeO). The Code 1998acknowledges the physician's autonomy regarding the scheduling, thechoice and application of diagnostic and therapeutic means, within theprinciples of professional responsibility. This responsibility has tomake reference to the following (...) fundamental ethical principles:(1) the protection of human life; (2) the protection of thephysical and psychological health of the human being; (3) therelief from pain; (4) the respect for the freedom and the dignityof the human person, without discrimination; (5) an up-to-datescientific qualification (Art. 5). The authors underline that autonomyis an anthropological – and consequently ethical –characteristic of the human person. Different positions on autonomy inbioethics (individualistic, evolutionistic, utilitarian andpersonalistic models) are explained. The relation between theprofessional autonomy of the physician and the autonomy of the patientand of colleagues is discussed. In fact, the medical doctor isobliged: (1) to respect the fundamental rights of the person,first of all his/her life; (2) to ensure the continuity of thecare, even if he can only relieve the patient's suffering; (3) tomaintain, except under certain circumstances, professional secrecy andconfidentiality regarding patients and their medical records. Moreover,the physician cannot deny the patient correct and appropriateinformation. He/she should not perform any diagnostic or therapeuticactivity without the informed consent of the patient and the medicaldoctor must give up medical treatment in case of documented refusal ofthe individual. Furthermore, the medical doctor has the right to raiseconscientious objections if he/she is requested to perform medicalactions that are contrary to his/her conscience or medical opinion,unless this attitude would seriously and immediately harm the patient.Regarding the relationships with colleagues, the physician is obliged tosolidarity, mutual respect, and care of sick colleagues. Finally, theauthors discuss the Italian legislation affecting the physician'sprofessional autonomy: (1) the SSN health care Acts; (2) theso-called Charter for Public Health Care Services; (3) the Acts onprivacy; (4) Good Clinical Practice. (shrink)

Supporters of opt‐in organ procurement policies typically claim that the absence of consent to postmortem transplantable organ retrieval is a normative barrier to such retrieval. On this ground, justification of opt‐out policies is demanded. The paper shows that postmortem organ retrieval is normatively different from live organ removal, and so the doctrine of informed consent does not apply to it in the way it does in other types of cases. First, seen as the instrument of protection of autonomy or (...) the right to self‐determination, informed consent cannot be relied on in the case of dead persons; secondly, viewed as an instrument of annulment of harm or wrong to the dead (volenti non fit injuria), informed consent relies on indefensible accounts of posthumous harm or wrong. Postmortem organ retrieval in cases of absence of the decedent's consent and refusal is governed by other norms than those related to consent. Such norms include, among others, respectful treatment of human remains (such as those found in regulations of medicine, law enforcement, and research) and avoidance of inherently wrong contexts and purposes (such as killing for the purpose of organ retrieval or trade in the human body or its parts). It is concluded that the onus probandi is on the supporters of opt‐in, rather than opt‐out, policies of posthumous organ retrieval. (shrink)

Aujourd'hui, des malades atteints de pathologies graves pour lesquelles les alternatives therapeutiques sont limitees ou inexistantes reclament, non plus tant une protection contre les essais cliniques, qu'un droit d'y participer. Cette nouvelle revendication est le point de depart de la presente enquete, a la fois historique, juridique et sociologique, qui montre comment s'est formee, dans les normes et dans les pratiques, du XVIIIe au XXe siecle, la distinction entre l'animal de laboratoire et le sujet humain. Entre les cobayes et (...) les hommes. La premiere partie de l'ouvrage decrit la formation, de part et d'autre du proces des medecins de Nuremberg, d'un consensus normatif international en reponse aux crises sanitaires, accidents et scandales qui emaillent l'histoire des essais medicaux sur l'etre humain. La seconde partie detaille la situation en France, l'emergence d'une legislation sur les recherches biomedicales, les paradoxes qui persistent dans la loi et les realites nouvelles, sociologiques et scientifiques, qu'elle doit affronter. L'ouvrage montre l'urgence d'un nouveau contrat social en matiere de recherche biomedicale, articulant respect de l'autonomie, equite d'acces et protection des personnes. Et il propose des solutions. (shrink)

Cet article propose des principes éthiques pour renforcer la conscience éthique de la gouvernance par rapport à la prise de décision pour la protection des êtres humains dans la biopolitique du Covid-19. La pandémie représente un nouveau défi pour la durabilité à l’époque de l’Anthropocène. La bioéthique et le biodroit doivent relever ce défi afin de protéger l’humanité de la destruction par pandémie. D’une part, il existe un danger de domination biopolitique du citoyen, d’autre part, un défi qui consiste (...) à assurer la protection de la dignité humaine en temps de pandémie. À travers une analyse herméneutique, l’article montre à quel point la responsabilité éthique est importante en tant que fondement des bons soins de santé dans les domaines de la politique et de l’économie au sein de la civilisation moderne marquée par la mondialisation et le progrès technologique. Ainsi, l’éthique pandémique implique une réinterprétation des principes éthiques importants d’autonomie, de dignité, d’intégrité et de vulnérabilité de la protection de la personne humaine dans la perspective de bioéthique et de biodroit à l’époque de l’Anthropocène. (shrink)

BackgroundThis article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives.MethodsA content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision.ResultsThree themes were identified: ‘conditions’, ‘ethical considerations’ (...) and ‘look back’. Conditions were: ‘sense of urgency’, ‘incompetence to decide’ and ‘agreement between relatives’. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased’s body, especially when they do not know his/her preference. Donor families respect the deceased’s last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments. Some non-donor families would like to be supported during decision-making.DiscussionThe discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased’s wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families.ConclusionDiscrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation. (shrink)

In this ground-breaking article submitted for publication in mid-1986, Lucinda Vandervort creates a radically new and comprehensive theory of sexual consent as the unequivocal affirmative communication of voluntary agreement. She argues that consent is a social act of communication with normative effects. To consent is to waive a personal legal right to bodily integrity and relieve another person of a correlative legal duty. If the criminal law is to protect the individual’s right of sexual self-determination and physical autonomy, rather than (...) simply to regulate the type and degree of force that may be used to obtain compliance from a victim, the point of reference must be the individual complainant, as a person who makes choices, not social norms or objective tests based on the ordinary person. To determine whether consent is voluntary, attention must be directed to the presence or absence of factors that had a coercive impact on the individual complainant, a specific person with a collection of social, cultural, and psychological experiences, needs, fears, values, and priorities. Individuals have the right to exercise self-determination in accordance with their own values and perceptions, not those of a mythical victim. Accordingly, Vandervort argues that the prosecution may show either refusal, the absence of affirmative voluntary agreement (including passivity or the absence of consent due to unconsciousness), or circumstances that invalidate any apparent consent. Any of these prove the absence of consent for the purposes of establishing the actus reus of sexual assault. -/- The definition of consent as the affirmative communication of voluntary agreement is also shown to have a variety of implications for the interpretation and application of the law of sexual assault and the handling of evidentiary issues at trial in sexual assault cases. Key among these is the pivotal significance of the legal definition of consent as a tool to bar availability of the defence of “mistaken belief in consent.” Vandervort argues that in many cases the defence of “mistaken belief in consent” is based on ignorance of the law of consent, mistake about the legal definition of consent, or a failure to appreciate the legal significance of facts that are well-known, and not on a mistaken belief in an erroneous set of facts. The broad proposition asserted here is that a statutory criminal law is enforceable only if all defences based directly or indirectly on belief in the validity of extra-legal norms that authorize infringement of rights protected by the criminal law are barred. This proposition and the characterization of some mistakes about consent as legal, not factual, are also shown to be useful to exclude rape-myths and stereotypical assumptions---the stuff of which “social” definitions of consent have long been constructed---from the decision-making process at trial. -/- . (shrink)

Patients are usually granted autonomy rights, including the right to consent to or refuse treatment. These rights are commonly attributed to patients if they fulfil certain conditions. For example, a patient must sufficiently understand the information given to them before making a treatment decision. On the one hand, there is a large group of patients who meet these conditions. On the other hand, there is a group that clearly does not meet these conditions, including comatose patients or patients in the (...) late stages of Alzheimer’s disease. Then there is a group of patients who fall into the range in between. At the lower end of this range are so-called ‘marginal agents,’ which include young children and patients in the middle stages of Alzheimer’s disease. They also do not meet the typical requirements for autonomy, which is why they are usually granted fewer autonomy rights. However, some of them are capable of ‘pre-forms’ of autonomy that express what is important to them. These pre-forms differ from mere desires and reflect the identification/authenticity condition of autonomy. They have something in common with autonomous attitudes, choices, and actions – namely, they express the _value_ of autonomy. As I will argue, autonomy is a value worthy of protection and promotion – even in its non-reflexive forms. Against this background, it becomes clear _why_ we have autonomy duties, more precisely positive, autonomy-enabling duties, towards marginal agents and why we should give them as much attention as autonomy duties towards competent patients. (shrink)

Feminist legal scholarship has questioned the usefulness of non-consent as a criterion for rape. Under conditions of generalized sexual oppression, consent may not be an adequate for absence of coercion. I defend this argument and propose that rape law reform can be usefully informed by state protection of workers in the capitalist labor market, where it is assumed that the parties occupy an unequal bargaining position.

Background Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation for research purposes emphasises the importance of considering the implementation of participatory, adaptive, and trustworthy policies and guidelines for consent procedures. However, the perspectives of gamete donors and recipients about decision-making regarding research with EGDs are still under-researched, which precludes the development of policies and guidelines informed by evidence. This study seeks to explore the views of donors and recipients (...) about who should take part in consent processes for the use of EGDs in research. Methods From July 2017 to June 2018, 72 gamete donors and 175 recipients completed a self-report structured questionnaire at the Portuguese Public Bank of Gametes. Agreement with dual consent was defined as the belief that the use of EGDs in research should be consented by both donors and recipients. Results The majority of participants were willing to donate embryos for research. Almost half of the donors and half of the recipients considered that a dual consent procedure is desirable. This view was more frequent among employed recipients than among non-employed. Donors were less likely to believe that only recipients should be involved in giving consent for the use of EGDs in research and were more frequently favourable to the idea of exclusive donors’ consent. Conclusions Divergent views on dual consent among donors and recipients indicate the need to develop evidence-based and ethically sustainable policies and guidelines to protect well-being, autonomy and reproductive rights of both stakeholder groups. More empirical research and further theoretical normative analyses are needed to inform people-centred policy and guidelines for shared decision-making concerning the use of EGDs for research. (shrink)

BackgroundBased on an actual case in which a psychiatrist was called in to assess a patient’s capacity to refuse treatment, the aim of this study is to discuss how to manage this ethical and clinical issue and the dilemmas faced by the medical team.Case presentation: The case involved a 45-year-old female patient diagnosed with breast cancer who refused treatment. Since the mastology team had doubts about the patient’s mental state and given that she refused to consent to surgery, a forensic (...) psychiatric consult was requested.ConclusionThe forensic psychiatry team concluded that the patient’s decision-making capacity was preserved. The team suggested some actions to help the specialists deal with the ethical conflict. A reflection is proposed about the role of psychiatrists when an ethical dilemma involving decision-making capacity emerges in clinical situations, elucidating their work not only as physicians who determine diagnoses and conducts, but also as agents of transformation in the doctor–patient re... (shrink)

Dès l'aube de la pensée philosophique en occident, l'Ecole d'Elèe souligne le caractère absolu de l'être. Découverte des plus importante, qui ne cessera d'exercer une profonde influence sur tout le cours de la réflexion philosophique. Platon s'attache à réhabiliter l'intelligibilité du multiple : il y a « des idées » subsistantes; et Aristote dégage l'intelligibilité du multiple matériel : il y a « des catégories » obtenues au moyen de l'abstraction. L'un et l'autre s'efforce d'y découvrir un ordre : rapports (...) de participation, selon Platon ; rapports de causalité, selon Aristote. Platon se dégage de la tenaille de Parménide, — ou l'être, ou l'absurde néant, — en distinguant deux néants : l'un, qui est le contraire de l'être, est absurde ; mais l'autre, qui est l'altérité, est parfaitement intelligible, une idée, un être véritable. Ce non-être relatif, à savoir l'altéritê, est aussi universel que l'être correspondant, à savoir ceci, cela, êtres corrélatifs. Pour autant, l'unité fondamentale du monde des idées est une unité d'ordre, une multiplicité, et non plus l'unicité à la manière de Parménide. Il est vrai que de toute son âme Platon aspire à une unité suprême et unique, mais il ne réussit pas à l'intégrer techniquement dans son système. Aristote, qui pose carrément en principe que l'être a des sens multiples et irréductibles, notamment les catégories, découvre, lui aussi, un ordre qui unit les catégories entre elles, de même qu'un ordre qui unit toutes les réalités substantielles en les reliant à un Premier Moteur : il est vrai que cette dernière influence ne peut pénétrer jusqu'au fond de la réalité, puisque celle-ci est autre chose que du mouvement, et que par conséquent cette réalité, fondamentalement non unifiée, demeure fondamentalement inintelligible. Il est intéressant de rapprocher de ces deux systèmes « essentialistes » celui de Hegel, dont le mouvement dialectique part de l'être et se porte immédiatement vers le non-être correspondant, considéré comme intelligible : l'être s'en trouve radicalement « relative » . Aussi bien, c'est dans l'élaboration ultérieure de l'être qualifié, quidditatif, que Hegel cherche, mais en vain, l'idée absolue. Plotin réussit à formuler nettement le problème du relatif et de l'absolu et à s'orienter vers une solution : il souligne le caractère radicalement relatif de la réalité relative, ce qui implique le caractère radicalement indépendant de la réalité absolue. Comme il continue à entendre l'être à la manière essentialiste de Platon et d'Aristote, il va de soi qu'il ne lui est pas possible d'identifier l'être et l'absolu : la réalité suprême, l'Un, est donc au delà de l'être, de même qu'il est au delà de l'intelligence, dont l'objet propre est l'être. En distinguant la quiddité et l'existence, Avicenne introduit, à côté de la quiddité, une nouvelle dimension où pourra se mouvoir l'intelligence. Néanmoins c'est sur la quiddité qu'il met l'accent : considérée en elle-même et indépendamment de toute rapport virtuel ou actuel avec l'existence, la quiddité à un sens complet ; au contraire, l'existence ne se conçoit que se rapportant à la quiddité. C'est du côté de la quiddité que se trouve l'absolu. S. Thomas reprend la distinction avicennienne, mais en la retournant : car c'est à l'esse qu'il accorde la primauté : l'esse est acte, la quiddité est puissance ; l'esse est la perfection fondamentale de tout, à laquelle toute réalité participe. C'est dans la ligne de l'esse que se trouve l'absolu. Heidegger fait observer que depuis Platon la philosophie se trouve sur une mauvaise voie : c'est toujours de l « étant » qu'elle s'est occupée, c'est-à-dire, de l'être qualifié, tandis qu'elle a négligé l'étude de l'être lui-même. Sans doute a-t-il raison pour une bonne part, mais il ignore que S. Thomas a élaboré une philosophie authentique de Yesse, que beaucoup sont trop enclins à ne pas considérer. Comment justifier le point de départ et le point de vue d'une philosophie de l'être ? Où les trouver ? Non pas dans quelque secteur particulier où Ion rencontrerait l'être pur, mais dans tout secteur, dans toute expérience. C'est sur le fait qu'il faut s'appuyer, sur le fait dont l'homme de science déclare qu'il est plus fort que le Lord Maire de Londres. L'homme de science se borne à noter les faits et à en chercher la régularité ; le philosophe s'attache à découvrir la raison de la solidité absolue des faits et à dégager ce que cela implique. Lorsqu'on a exposé tout ce qu'est une réalité donnée, tout ce que sa quiddité comporte, on n'a nullement fini de dire ce que cette réalité contient d'intelligible, puisqu'on n'a pas encore déclaré que cette réalité est, qu'elle existe. Sans doute, Kant est-il d'avis que l'intelligibilité de cent thalers existants ne dépasse en rien celle de cent thalers possibles, mais il est pourtant certain que le jugement d'existence, qui est un jugement, est affaire d'intelligence, d'intelligibilité : il manifeste d'emblée la solidité irréfragable de l'être ; rien ne pourra plus jamais effacer ce qui a été et, désormais, absolument tout doit en tenir compte. C'est cela même qui est à la base de la connaissance vraie, à savoir de celle qui saisit « ce qui est ». Ceci ne contredit en rien la relativité des faits : c'est précisément le fait qui nous révèle l'absolu, c'est le relatif qui se montre comme étant absolument relatif. Tout comme c'est de la situation dans laquelle je me trouve que j'ai conscience et que c'est donc en elle que je domine et transcende la relativité qui est propre à cette situation. L'absolu que je saisis est celui qui me révèle le relatif. Mon point de vue, qui n'est qu'humain, n'est jamais celui de Dieu : cependant il contient une valeur d'absolu. Et la donnée qui m'est présentée n'est pas l'être divin : cependant elle manifeste une signification d'absolu, à savoir la signification d'être. Dans cette signification, tout coïncide, car ce qui ne s'y trouverait pas, serait pur néant. Tout se rencontre dans une identité fondamentale. C'est à raison de l'être qu'il contient que la réalité parle à l'intelligence, comme aussi à la vie appetitive : c'est grâce à sa signification d'être, que la réalité peut m'être « présente ». Aussi bien, pour y répondre, pour résoudre les problèmes qu'elle pose, il n'est que de s'en approcher et de se laisser guider par elle. On peut montrer que la signification absolue d'être que manifeste toute donnée exige un principe réel unique qui fonde toute réalité. Ce principe ne peut se concevoir, ni sur le mode d'une substance, ni sur celui d'une cause particulière, car l'une et l'autre sont essentiellement relatives. Il ne peut s'entendre que comme l'Absolu, dégagé de tout rapport : si toutes choses sont intégralement dépendantes de cet Absolu, lui-même ne peut dépendre de rien et il garde nécessairement son indépendance totale. Il apparaît clairement qu'il ne sert à rien de se mouvoir, « horizontalement », le long d'une série de causes dans l'espoir d'en découvrir une, par exemple la première de la série, qui permettrait davantage de se porter, « verticalement », vers l'Absolu ; car du fini à l'Infini la distance demeure partout la même et la difficulté est toujours égale : le passage du fini à l'Infini est unique et il exige d'être examiné et justifié avec soin. L'argument en question est d'une nature spéciale : il s'agit d'atteindre l'Infini à partir du fini et, de plus, au moyen d'une intelligence finie. Aussi bien, n'atteignons-nous jamais immédiatement l'Infini en lui-même, mais uniquement dans le fini et tel que le fini nous le révèle. Donc c'est tout en pensant le fini qu'il nous faut penser l'Infini, à savoir comme exigence fondamentale de ce fini. C'est en ce sens qu'on dit que de l'Infini au fini il y a relation logique. Cependant, par là-même nous comprenons que nulle relation réelle ne peut lier l'Infini au fini. Ceci ne signifie nullement que l'Absolu divin serait entièrement isolé et loin de toute réalité finie ; mais tout au contraire, que Dieu est plus près de la créature qu'aucun terme relatif ne peut jamais l'être du terme qui lui correspond : l'Absolu créateur, souverainement indépendant et transcendant, est tout aussi parfaitement immanent, c'est-à-dire toujours intimement et activement présent à ce qu'il pose dans le réel. (shrink)

Although Directive 2001/20/EC of the European Parliament and of Council of 4 April 2001 on the approximation of the laws regulations and administrative provisions of the Member States relating to the implementation of good clinical practice in the conduct of clinical trials on medicinal products for human use does not contain an exception for emergency situations, and requires the informed consent of a legal representative in all cases where research is conducted on legally competent individuals who are unable to give (...) informed consent, in Poland, emergency research can be conducted without consent. Polish regulations on emergency research can hardly be treated as a result of intentional legislative policy. Our provisions arise from multiple and sophisticated interpretations of different regulations that govern medical experiments on human subjects and clinical trials. These interpretations can be summarized as follows: There are two categories of medical experiments: therapeutic and non-therapeutic experiments. Emergency research without consent may be conducted in the category of therapeutic experiment only.. Emergency research may be conducted without consent if there is a situation of great urgency in which the research subject’s life is in danger and there is no possibility of obtaining immediate consent from the research subject him or herself, or from his or her legal representative or guardianship court, and the research subject has not refused to give consent for the participation in an emergency therapeutic experiment. The legal representative or guardianship court shall be provided with all the relevant information concerning subject’s participation in an experiment as soon as possible. All projects of emergency research with intent to be done without the research subject’s consent must be approved by an independent bioethics committee. Because these five requirements seem to provide insufficient protection for a subject’s autonomy and rights it is necessary to add to them two other conditions: the emergency research could not be conducted using other research participants capable of giving informed consent; and informed consent for continued participation in the emergency research shall be obtained from either the participant him or herself or the legally authorized representative as soon as possible. A consolidated single Act that will govern all aspects of medical experiments on human subjects, including emergency research, should be prepared and enacted as soon as possible. (shrink)

ObjectiveInformed consent is a prerequisite for caesarean section, the commonest surgical procedure in low- and middle-income settings, but not always acquired to an appropriate extent. Exploring perceptions of health care workers may aid in improving clinical practice around informed consent. We aim to explore health workers’ beliefs and experiences related to principles and practice of informed consent.MethodsQualitative study conducted between January and June 2018 in a rural 150-bed mission hospital in Southern Malawi. Clinical observations, semi-structured interviews and a focus group (...) discussion were used to collect data. Participants were 22 clinical officers, nurse-midwives and midwifery students involved in maternity care. Data were analysed to identify themes and construct an analytical framework.ResultsDefinition and purpose of informed consent revolved around providing information, respecting women’s autonomy and achieving legal protection. Due to fear of blame and litigation, health workers preferred written consent. Written consent requires active participation by the consenting individual and was perceived to transfer liability to that person. A woman’s refusal to provide written informed consent may pose a dilemma for the health worker between doing good and respecting autonomy. To prevent such refusal, health workers said to only partially disclose surgical risks in order to minimize women's anxiety. Commonly perceived barriers to obtain a fully informed consent were labour pains, language barriers, women’s lack of education and their dependency on others to make decisions.ConclusionsHealth workers are familiar with the principles around informed consent and aware of its advantages, but fear of blame and litigation, partial disclosure of risks and barriers to communication hamper the process of obtaining informed consent. Findings can be used to develop interventions to improve the informed consent process. (shrink)

Despite substantial controversy, the use of futility judgments in medicine is quite common, and has been backed by the implementation of hospital policies and professional guidelines on medical futility. The controversy arises when health care professionals (HCPs) consider a treatment futile which patients or families believe to be worthwhile: should HCPs be free to refuse treatments in such a case, or be required to provide them? Most physicians seem convinced that professional autonomy protects them from being forced to provide treatments (...) they judge medically futile, given the lack of patient benefit as well as the waste of medical resources involved. The argument from professional autonomy has been presented in a number of articles, but it has not been subjected to much critical scrutiny. In this paper I distinguish three versions of the argument: 1) that each physician should be free to exercise his or her own medical judgment; 2) that the medical profession as a whole may provide futility standards to govern the practice of its members; and 3) that the moral integrity of each physician serves as a limit to treatment demands. I maintain that none of these versions succeeds in overcoming the standard objection that futility determinations involve value judgments best left to the patients, their designated surrogates, or their families. Nor do resource considerations change this fact, since they should not influence the properly patient-centered judgment about futility. (shrink)

This qualitative cross-sectional survey, undertaken in the antenatal booking clinics of a hospital in central London, explores pregnant women’s responses to routine HIV testing, examines their reasons for declining or accepting the test, and assesses how far their responses fulfil standard criteria for informed consent. Of the 32 women interviewed, only 10 participants were prepared for HIV testing at their booking interview. None of the women viewed themselves as being particularly at risk for HIV infection. The minority of the participants (...) who declined testing differed from those who accepted, by interpreting test acceptance as risky behaviour, privileging the negative outcomes of HIV positivity and expressing an inability to cope with these, should they occur. Troublingly, only a minority of women had a broad understanding of the rationale for the test, and none fulfilled the standard criteria for informed consent. This study suggests that, although routine screening combined with professional recommendation may be successful in increasing uptake, this may be at the cost of eroding informed consent. Protecting third parties from a preventable disease may outweigh the moral duty of respecting autonomy, enshrined in Western bioethical tradition. Nevertheless, such a policy should be made transparent, debated in the public domain and negotiated with women seeking antenatal care. (shrink)

The aim of the paper is that of investigating the concept of “person” in the context of Italian law on informed consent and advance healthcare directives. The following paper will first consider the importance of the concept of “person” within bioethics; secondly it will exhibit how there are different levels of bioethics, and that on the discussion level of laws and regulations, concepts worthy of metaphysical and value references cannot be used, because they must be shared by everyone in a (...) pluralistic society. I’ll then move on to discuss the law on informed consent and advance healthcare directives; first I’ll discuss the references to the Italian Constitution, showing that the implied concept of “person” is closely linked to the concepts of “equality” and “autonomy”, and finally I’ll discuss the particular case of minors and the protection that the law provides them. (shrink)

In this paper I examine some of the significant moral concerns inherent in cases of treatment refusal involving patients with psychotic disorders. In particular, I explore the relevance of the principle of autonomy in such situations. After exploring the concept of autonomy and explaining its current and historical significance in a health care setting, I argue that because autonomous choice depends for its existence upon certain human functions such as the ability to reason, judge, and assess consequences, patients cannot be (...) said to be making free and autonomous decisions if these capacities are compromised. I contend further that because psychotic disorders have the potential to compromise these functions in the future, it is appropriate, in some limited cases, to coerce patients with psychotic disorders to undergo treatment in order to preserve their future decisionmaking capacities and to protect their ability to recognize and respect the autonomy of others. (shrink)

Découverte près d'Alivéri en Eubée, cette importante inscription du milieu du IVe siècle av. J.-C. est demeurée longtemps inédite. Il s'agit d'une grande stèle amputée en haut et à gauche, où se lisent encore 35 lignes gravées stoichédon (à raison de 51 lettres par ligne après restitution). Sur la base du lieu de trouvaille, de la langue et du contenu, on peut rapporter à la même stèle le fragment IG XII 9, 190, en dépit du fait que ce petit morceau (...) — perdu depuis longtemps — n'a pas été présenté comme un texte stoichédon par son unique copiste. Ce rapprochement permet de restituer le frag ment en question (A) plus sûrement qu'on n'avait pu le faire jusqu'ici : c'est le début de la loi, avec l'énoncé des récompenses prévues pour le tyrannoctone, modulées en fonction de son statut politique et social. Le texte du nouveau morceau (B) se compose lui-même de deux sections distinguées par une asyndète significative. La première section (1. 1-17) comporte une série de clauses ayant pour objet la protection de la constitution démocratique contre toute tentative de mise en place d'un régime tyrannique, notamment par le biais d'une motion subversive : le contrevenant se verra non seulement privé de ses droits civiques (discussion sur la notion d'atimia à cette date) et de ses biens (confiscation par l'État — avec une dîme pour Artémis Amarysia, dont la prééminence dans le panthéon érétrien est ainsi confirmée), mais proscrit à perpétuité (interdiction d'inhumer ses restes dans l'Érétriade ou Érétrias gê; impunité et même récompense accordées à son meurtrier). Cette première section s'achève par une imprécation solennelle visant à décourager toute atteinte contre les dispositions de la loi elle-même (rôle intéressant des prêtres et des prêtresses — avec le mot rare, sinon même nouveau, hiéris pour hiéreia — lors des Dionysia et des Artémisia) ; entre les termes de cette imprécation et le libellé des grands serments « internationaux » (attestés à partir du IVe siècle précisément) il y a plus d'un point commun à relever. (shrink)

There has been renewed interest in whether we should understand standards of decision-making capacity (DMC) to be risk-relative. Critics of risk-relative standards often highlight a puzzling asymmetry that they imply; a patient may have the requisite DMC to consent to a treatment that is in their best interests, whilst lacking the requisite DMC to refuse that same treatment, given the much higher risk that this would entail. Whilst some have argued that this asymmetry suggests that risk-relative standards are nonsensical, in (...) this paper I defend a ‘quality of evidence’ view of such standards. I begin by outlining DMC’s purported gate-keeping role in medical ethics, and identifying three key normative claims that undergird this role. I then explain how two competing theories of risk-relative standards are incompatible with at least one of these claims. Drawing on Douglas’ distinction between standards of ‘true capacity’ and standards invoked in the ‘test’ for capacity, I then outline my ‘quality of evidence’ view. I explain how the view is compatible with the aforementioned normative claims, and outline the nature of the asymmetry it implies. I conclude by responding to the objection that there is no meaningful distinction between ‘true capacity’ and the ‘test’ for capacity. (shrink)

The right of adults with sound mind to consent to treatment or risk their own health for the benefit of the community in a clinical trial is unequivocally recognised by the law. But what about those vulnerable by virtue of their age, nature or position in society? Experts from the fields of medicine, philosophy, theology and law, explore the ethical and legal principles which seek to reconcile the individual's right to autonomy with the need to protect vulnerable groups. Discussions refer (...) both to specific groups and specific issues. (shrink)

PHOTO ID 121339257© Designer491| Dreamstime.com ABSTRACT When physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be apparent conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters future physicians’ commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. We use an ethical dilemma that was presented to a group of third-year medical students to examine how ethics education might be causing (...) them to give undue deference to autonomy, thereby undermining their commitment to beneficence. INTRODUCTION The right of patients to choose which treatments they prefer is rooted in today’s social mores and taught as a principle of medical ethics as respect for autonomy. Yet, when physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be a conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters a commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. I. An Ethical Dilemma The impetus for this paper arose when students who were completing their third clinical year discussed a real-life ethical dilemma. A middle-aged man developed a pulmonary hemorrhage while on blood thinners for a recently placed coronary stent. The bleeding was felt to be reversible, but the patient needed immediate intubation or he would die. The cardiologist was told that the patient previously expressed to other physicians that he never wanted to be intubated. However, the cardiologist made the decision to intubate the patient anyway, and the patient eventually recovered.[1] Students were asked if they believed that the cardiologist had acted ethically. Their overwhelming response was, “No, the patient should have been allowed to die.” We looked into how students applied ethical reasoning to conclude that this outcome was ethically preferred. To explore how the third-year clinical experience might have formed the students’ judgment, we presented the same case to students who were just beginning their third year. Their responses were essentially uniform in recommending intubation. While there is likely more than one reasonable view in this case, we agree with the physician and the younger medical students that intubation was the ethically appropriate decision and will present an argument for it. But first, we explain the reasoning behind the more advanced medical students’ decision to choose patient autonomy at the expense of beneficence. II. Medical Ethics Education and the Priority of Autonomy Beauchamp and Childress’s Principles of Biomedical Ethics, first published in 1979 and now in its 8th edition, is a significant part of the formal ethics education in medical school.[2] Students learn an ethical decision-making approach based on respect for four ethical principles: autonomy, beneficence, nonmaleficence, and justice. While Beauchamp and Childress officially afford no prima facie superiority to any principle, the importance of respect for patient autonomy has increased through the editions of their book. For example, early editions of their book opposed the legalization of physician-assisted death compared to recent editions that defended it.[3] As another example, Beauchamp and Childress make paternalism harder to justify by adding an autonomy-protecting condition to the list of conditions for acceptable paternalism.[4] Authority, they contend, need not conflict with autonomy—provided the authority is autonomously chosen.[5] “The main requirement,” they write, “is to respect a particular patient’s or subject’s autonomous choices, whatever they may be.[6] In the principlism of Beauchamp and Childress, autonomy now seems to have a kind of default priority.[7] However, the bioethics discourse has strong counternarratives, noting some movement to elevate the role of beneficence and to respect the input of stakeholders, including the family and the healthcare team. Ethics education achieves particular relevance in the third clinical year when students become embedded in the care of patients and learn from what has been called the informal curriculum. They observe how attending physicians approach day-to-day ethical problems at the patient’s bedside. In this context, students observe the importance of informed consent for serious treatments or invasive procedures, a practice that highlights the principle of patient autonomy. In both the formal and informal curriculum, medical students observe how, in the words of Paul Wolpe, “patient autonomy has become the central and most powerful principle in ethical decision-making in American medicine.”[8] In short, students appear to learn a deference for patient autonomy. This curricular shift in favor of autonomy coincides with legal developments that protect patients’ rights and decision-making with respect to their healthcare choices. The priority of autonomy in medicine benefits patients by reflecting their choices and, in some cases, their fundamental liberty. III. The Practice of Medicine and the Commitment to Beneficence There are many critiques of the dominant place that autonomy has in biomedical ethics,[9] especially considering that autonomy seems to be biased toward individualistic, Western, and somewhat American culture-driven values.[10] In addition, many bioethical dilemmas are cast as a conflict between autonomy and beneficence. Our point is that medical students bring to their study of medicine a commitment to beneficence that seems to be suppressed by practical ethics education. We think this commitment is rationally defensible and should be nurtured. It is striking that young medical students have a pre-reflective commitment to beneficence at all. For, as we mentioned, it is not just medicine but Western culture generally that prioritizes autonomy in settling ethical dilemmas. In wanting to act for the good of others (rather than simply agreeing to what others want), physicians are already swimming somewhat against the cultural tide.[11] However, doing so makes sense, given the nature of medicine and the profession of healing. When prospective medical students are asked why they wish to become physicians, the usual answer is some variation on caring for the sick and preventing disease. It is unlikely that a reason to become a physician is to respect a patient’s autonomy. It would be easy to dismiss medical students’ commitment to beneficence as a mere intuition and contrary to a more reasoned and deliberative approach. Beauchamp and Childress seem to minimize the value of physician intuition, stating that justifications for certain procedures are “…supported by good reasons. They need not rest merely in intuition or feeling.”[12] Henry Richardson writes that “situational or perceptive intuition…leaves the reasons for decision unarticulated.”[13] We think this is a crude and rather thin way of understanding intuition. Some bioethicists have defended intuition as essential to the practice of medicine and not something opposed to reason.[14] In the case we describe, we believe the ethical justifications s for the patient’s intubation are fundamentally sound: the patient did not have a “do not intubate” order written in the chart, the emergency intubation had not been foreseen, so the patient did not have the opportunity to consent to or reject intubation; the patient had consented to the treatment for his cardiac disease so his consent for intubation could have been assumed;[15] and the consequences of respecting his autonomy did not justify allowing him to die.[16] While it is possible to have more than one reasonable view on this case, we think the case for beneficence is strong and certainly should not be dismissed out of hand. We do not deny that if a patient makes a clearly documented, well-informed decision to forgo intubation that this decision ought to be respected by the physician (even if the physician disagrees with the patient’s decision). But, in this situation, as in many others in the practice of medicine, the patient’s real wishes and preferences are not well-articulated in advance. There are many cases where a physician acts based on what she believes the patient, or the surrogate, would want, sometimes in situations that do not allow much time for reflection. An example might be resuscitation of a newborn at the borderline of viability. In their ethics education, beneficence would mean acting first to save a life. If the patient or surrogate makes an informed decision to the contrary, a beneficent physician respects that autonomous decision. In the case presented, the patient expressed gratitude to the cardiologist when extubated. But what if he had expressed anger at the physician for violating his autonomy? There are those who could argue that not only was intubation ethically wrong but that the cardiologist put himself in legal jeopardy by his actions (especially if there had been a written refusal applicable to the specific situation). In the example we use, we point out that the cardiologist may not have escaped a lawsuit if the patient had died without intubation. His family, when hearing the circumstances, may have sued for failure to act and dereliction of the cardiologist’s duty to save him. Beyond a potential legal challenge for either action or inaction, there is an overriding ethical question the cardiologist had to address: what course would be most satisfying to his conscience? Would he rather allow a patient to die for fear of recrimination, or act to save his life, regardless of the personal consequences? In the absence of real knowledge about the patient’s considered wishes, it is most reasonable to err on the side of promoting patient well-being. A physician’s commitment to beneficence is not necessarily a way of undermining a patient’s autonomy. In acting for the patient's good, physicians are also acting on what it is reasonable to believe a patient (or most patients, perhaps) would want, which is obviously connected to what a patient does want. Pellegrino and Thomasma argue that beneficence includes respect for a patient’s autonomy since “the best interests of the patient are intimately linked with their preferences.”[17] Instead of conceptualizing ethical dilemmas in medicine as conflicts between autonomy and beneficence, it is possible that medical schools could teach students that truly practicing beneficence is a way of valuing patient autonomy, especially when the patient’s wishes are not specific to the situation and are not clearly expressed. CONCLUSION It is important for students and practicing physicians to understand the principle of respect for patient autonomy in a pluralistic society that demands personal self-determination. However, the role of the physician as a beneficent healer should not be diminished by this respect for autonomy. Respecting a patient’s autonomy is grounded in and manifested by physician beneficence.[18] That is, seeking what is good for the patient can only be good if it respects their personhood and dignity. We propose that a commitment to beneficence, incipient in young medical students, should be developed over time with their other clinical reasoning skills. Such a commitment need not be sacrificed on the altar of patient autonomy. Beneficence needs greater relative moral weight with students as they proceed in their ethics education. - [1] S. Jauhar, “When Doctors Need to Lie,” New York Times, February 22, 2014, https://www.nytimes.com/2014/02/23/opinion/sunday/when-doctors-need-to-lie.html. [2] T. L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019). [3] Louise A. Mitchell, “Major Changes in Principles of Biomedical Ethics,” The National Catholic Bioethics Quarterly 14, no. 3 (2014): 459–75, https://doi.org/10.5840/ncbq20141438. [4] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019), 238. [5] Beauchamp and Childress, 103. [6] Beauchamp and Childress, p. 108. [7] For other accounts that prioritize autonomy, see e.g. Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge University Press, 1989), 38–39; R Gillon, “Ethics Needs Principles—Four Can Encompass the Rest—and Respect for Autonomy Should Be ‘First among Equals,’” Journal of Medical Ethics 29, no. 5 (October 2003): 307–12, https://doi.org/10.1136/jme.29.5.307. For examples of critiques of these accounts, see footnote 9. [8] P. R. Wolpe, “The Triumph of Autonomy in American Bioethics: A Sociological View,” in Bioethics and Society: Constructing the Ethical Enterprise, p. 43. [9] V. A. Entwistle et al., “Supporting Patient Autonomy: The Importance of Clinician-Patient Relationships,” Journal of General Internal Medicine 25, no. 7 (July 2010): 741–45; C. Foster, Choosing Life, Choosing Death: The Tyranny of Autonomy in Medical Ethics and Law, 1st ed. (Oxford ; Hart Publishing, 2009); O. O’Neill, Autonomy and Trust in Bioethics, The Gifford Lectures, University of Edinburgh 2001 (Cambridge, UK: Cambridge University Press, 2002). [10] P. Marshall and B. Koenig, “Accounting for Culture in a Globalized Bioethics,” The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics 32, no. 2 (2004): 252–66; R. Fan, “Self-Determination vs. Family-Determination: Two Incommensurable Principles of Autonomy,” Bioethics 11, no. 3–4 (1997): 309–22. [11] Arguments stressing the importance of beneficence, as ours does here, certainly approach paternalistic arguments. We set aside the complex issue of paternalism for purposes of this paper and simply note that the principle of beneficence as such does not say anything specifically about acting against the patient’s will. In the case study that focuses this paper, we do not believe the patient’s will or wishes were clearly indicated. [12] Beauchamp and Childress, Principles of Biomedical Ethics, p. 20, see note 2 above. [13] H. S. Richardson, “Specifying, Balancing, and Interpreting Bioethical Principles,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 25, no. 3 (January 1, 2000): 285–307, p. 287. [14] H. D. Braude, Intuition in Medicine a Philosophical Defense of Clinical Reasoning (Chicago ; University of Chicago Press, 2012). [15] R. Kukla, “Conscientious Autonomy: Displacing Decisions in Health Care,” The Hastings Center Report 35, no. 2 (2005): 34–44. [16] M. Schermer, The Different Faces of Autonomy: Patient Autonomy in Ethical Theory and Hospital Practice, vol. 13, Library of Ethics and Applied Philosophy (Dordrecht: Springer Netherlands, 2002). [17] E. D. Pellegrino and D. C. Thomasma, For the Patient’s Good - the Restoration of Beneficence in Health Care (New York, NY: Oxford University Press, 1988), p. 29. [18] Pellegrino and Thomasma, For the Patient’s Good. 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Nous nous proposons d'analyser la notion de proportionnalité, comme une sorte d'analogie. Sans doute, les mathématiques peuvent-elles, sur des modes variés, nous permettre de donner forme à cette notion et n'y a-t-il pas d'éthique de la proportion sans elles. En particulier, il paraît important d'essayer de fabriquer des « espaces éthiques » avec des notions telles que : équivalence, équilibre, proximité, distance, symétrie, dissymétrie ; et des notions assez semblables de logique du temps. Mais les mathématiques ne sauraient suffire par (...) elles-mêmes à déterminer ce qui est juste. Dès lors, comment fonctionne la normativité qu'enferme la proportionnalité? Y a-t-il une rationalité de la proportionnalité? comme norme? (shrink)

Article 12 of the General Data Protection Regulation (GDPR) requires data controllers to provide data subjects with any information relating to data processing operations “in a concise, transparent, intelligible and easily accessible form, using clear and plain language.” Linguistic inclusivity of privacy policies is no longer a matter of style, but has been a binding legal requirement under the new data protection framework. Article 5 GDPR sets forth the requirements of lawfulness, fairness and transparency and prohibits any data (...) processing operations which do not meet the standards of specification, explicitness and legitimacy of processing purposes [ 29 ]. In this study, a quantitative and qualitative analysis of linguistic indeterminacy in a corpus of 350 online privacy policies is presented and it is argued that a considerable number of data controllers continue to make use of strategic vagueness in the context of purpose limitation, therefore potentially prejudicing compliance with the GDPR. A legal-linguistic perspective on the current challenges of informed consent in European data protection law is provided. Finally, it is concluded that while the GDPR has contributed significantly to the linguistic empowerment of the data subject, the framework fails to satisfy the expectation of creating a participatory culture (see [ 36 ]) with a high degree of informational self-determination. (shrink)

People who wish to end their lives when they consider that they cannot endure further pain and suffering cannot legally obtain help to produce a peaceful death. The reality of practice seems to be that, covertly, physician-assisted suicide and voluntary euthanasia do take place. The value of personal autonomy in issues of consent has been clarified in the courts in that a competent adult person has the right to refuse or choose alternative treatments even if death will be the outcome. (...) This issue needs open discussion and regulation in order to protect those vulnerable people in our society. (shrink)

Recension du livre de Francesco Callegaro, La science politique des modernes, Durkheim et le projet d’autonomie, Paris, Economica, 2015. Ce livre a une ambition philosophique et politique indéniable qui justifie qu’on le discute, au-delà de l’intérêt qu’il présente pour la connaissance de l’œuvre de Durkheim. À travers une étude claire et maîtrisée de la sociologie durkheimienne, il redonne en effet toute sa fraîcheur au projet sociologique durkheimien en rappelant ce qui fut son ambition première et jamais démentie : être (...) une véritable science politique pour les modernes, en leur fournissant les outils intellectuels et méthodologiques pour accomplir le projet d’autonomie de la personne qui est au cœur de leurs sociétés. (shrink)

La 4e de couverture indique : "Dans cet ouvrage de référence consacré à une analyse approfondie du thème du consentement aux soins dans la pratique médicale, M.-F. Civil porte son regard de médecin et de philosophe sur les comportements de bon nombre de praticiens à l'heure actuelle plus ou moins soumis à la « mathématisation » de la médecine. Loin de se contenter d'un état des lieux complet de la question, il nous conduit pas à pas sur les chemins (...) d'une « éthique existentielle » tout à fait singulière, renvoyant à des situations pratiques de soins où délibérer avant d'agir et réfléchir à l'action déjà prise permet aux patients d'exprimer le sens donné à leur vécu dans le cadre de leur projet de vie immédiate ou future. Son approche très phénoménologique, aux côtés notamment de Heidegger et Husserl, ouvre la porte à un vaste chantier de réflexion pour tous ceux qui envisagent de se pencher sur la manière concrète d'être-au-monde en médecine comme souci pour soi et pour les autres. Ainsi ce livre interpelle les étudiants, les chercheurs, les professionnels de santé, mais également tous ceux qui ont été, ou seront, tôt ou tard, confrontés au problème du consentement.". (shrink)

Biobanks challenge the traditional model in research ethics, in which the autonomy of subjects donating samples for biomedical research is to be protected by means of informed consent. This paper identifies a global trend towards governance models more favourable to research, in which a single act of consent is used to authorize a wide range of research projects. It argues that the protection of autonomy is often understood just as the requirement to sign an informed consent form; but the (...) autonomy of research subjects is neither an isolated decision nor a purely individual one, as it affects groups of people along time. Some ways out of this problem are discussed, both by re-conceptualizing autonomy and by expanding the informed consent process. Taking into account the relationship between public trust and donor participation, the possibility of respecting autonomy by means of narrative is suggested, with the aim of promoting the scientific culture of a population and debating the ethical issues raised by biobanks. (shrink)

The situation of asylum seekers confined under deportation orders can expose caregivers to major clinical and organisational ethics issues. To help caregivers and healthcare organisations find ethical guidance, I reviewed the challenges of access to care and analysed the health and socio-political data to understand the ethical and logistical issues they face in these situations. My research shows that the situation of these patients raises issues of law, equity and distributive justice, and that there is a wide gap in knowledge (...) about these situations and the resources available. This exploratory study shows that independent doctors, independent community resources and hospitals are the resources best placed to meet the care needs of refused asylum seekers, and that there is an urgent need to raise awareness and train caregivers in these issues. (shrink)

The world famous Eltroxin saga of 2009–2011, which ignited heated public debates in Europe, Canada, and Australia, reveals the problematic nature of standalone autonomy protection cases. Eltroxin is a life-sustaining thyroid hormone replacement medicine used by millions worldwide; it was reformulated in 2008, and around 10% of patients were badly affected. Poor communication and lack of professional information triggered public hysteria as a global wave of complaints about harmful side effects, including hair loss, weight gain, extreme fatigue, headaches, diarrhoea, (...) and heightened heart rates, flooded the media. Israeli Eltroxin users (around 250 thousand people) were similarly unaware. Following many media reports and ministerial regulations, a high-profile consumer class action was launched against Perrigo, the distributor. Ten years of court proceedings culminated in a compensation settlement of approximately US$ 14 million. This relatively low sum covered the injuries of those patients who were physically affected; compensation for standalone autonomy injuries to all patients (who were denied information about changes to their life-sustaining medicine) was refused. The monetary settlement and court decision were hugely disappointing to the class plaintiffs, and a negative signal was sent to the proponents of consumers' and patients' personal autonomy. However, the class action still marked a positive change in pharmaceutical protocols for relations between health authorities, commercial pharmacy entities, and patients/consumers as seen by the proactive communication around a subsequent Eltroxin reformulation in 2020 in Israel, Europe, and South Africa (Aspen Pharmacare, 2020).1 This paper highlights the vast potential value of consumer class action proceedings, and pharmaceutical consumer (patient) class actions in particular, for public welfare and private autonomy. The paper will explain leading Israeli case law related to consumer autonomy protection in tort law and will argue that this law still holds the unique protection of autonomy as a basic human right and accordingly recognises harm to autonomy as a viable form of damage. Additionally, it illustrates why and how consumer protection class actions are an important tool for protection of human rights in general and of patients' rights in particular. (shrink)

La dénomination „soins palliatifs" apparait trop rarement dans la langue courante pour qu'on puisse s'en servir sans aucun commentaire, au moins très court. Sa compréhension nominale suggère que ces soins ont pour objet la personne âgée qui, suite à Infirmité et à la maladie, commence l'étape ultime de sa pérégrination terrestre, l'etape qui trouve sa fin dans la mort. Cependant notre expérience nous apprend aussi que les personnes entre deux ages ou même très jeunes peuvent également se retrouver (...) dans une situation qui, pour des raisons semblables, les met en présence de la mort et implique leur dépendance de l'entourage. Alors c'est dans ces raisons qu'il faut chercher le déterminant de la situation dans laquelle l'homme a besoin d'une aide spécifique - „les soins palliatifs". A partir de cela nous pouvons essayer de formuler la première définition des „soins palliatifs". On peut comprendre ces soins comme I'ensemble d'actes entrepris par I'entourage en faveur des personnes menacées par la mort à la suite d'une dégradation profonde de leur condition psychophysique due à une maladie ou à d'autres défauts organiques, ce qui fait qu'elles sont incapables de satisfaire elles-mêmes à leurs besoins vitaux. (shrink)

The basics -- The dignity of the human person -- Autonomy, consent, refusing treatment and boundaries -- Ethics and non-autonomous patients -- Confidentiality, privacy, data protection, truth telling and trust -- Ethical issues at the beginning of life -- Ethical issues about babies, children and young adults -- Ethical issues at the end of life -- Dying and death: ethical issues -- Loss, grief and bereavement, burn-out and the wounded healer -- Conscientious objection and loyalties.

Noncompliance exasperates health care professionals, leaves them worrying about the effective outcome of medical care, and results in noncompliant patients being labelled as 'difficult' or 'troublesome'. It is suggested that professionals who label a patient as noncompliant are following convenient paternalistic principles rather than considering the impact of a prescribed regimen on an individual patient. In this paper, the author considers autonomy and respect to be foremost in patient care. Further, compliance does not necessarily indicate that both professional and patient (...) have developed a collaborative understanding relationship. Noncompliance is described as a lack of recognition by the health care professional of the meaning of the regimen to the patient. Treatment interventions will be most successful when the patient participates in the prescription. Without acknowledgement of the patient as an equal partner, and listening to his or her narrative, care will be, at best, paternalistic. Les soignants peuvent devenir exasperes par les malades qui n'acquiescent pas à leur traitement. Cela laisse les soignants souciant des résultats de leurs soins et abouti à ce que les malades sont qualifiés de difficiles ou insoumis. On propose ici que le personnel qui traite les malades d'insoumis suit des principes paternalistes plutôt que de considérer les suites des regimes prescrits pour les particuliers. Dans cet article l'auteur considère l'autonomie et le respet comme primordiaux pour les soins. L'acqiescement ne veut pas toujours dire que malades et infirmiers/ères ont développés des rapports collaborateurs. Le refus d'acquiescer est aperçu comme un manque de reconnaissance par la personne soignante de la significance du traitement médical du malade. Les interventions réussissent le mieux quant les malades participent à leurs soins. Si l'on n'accepte pas les malades comme partenaires en écoutant leurs récits, les soins sont au plus du paternalisme. Die Ablehnung der verordneten Behandlung durch die Patienten kann das Pflege personal zur Verzweiflung bringen und den Ausgang der Behandlung in Frage stellen und führt dazu, die Patienten als schwierig oder problematisch einzustrafen. Hier wird die Ansicht vertreten, dass das Pflegepersonal, das Patienten als unkooperativ oder ablehnend bezeichnet, einem paternalistischen Prinzip folgt und nicht an die Wirkung denkt, die die verschriebene Behandlung auf einzelne Patienten hat. In diesem Artikel bezeichnet die Autorin die Selstbestimmung der Patienten und den Respekt ihnen gegenüber als das Wichtigste in der Krankenpflege. Fügsamkeit deutet nicht unbedingt auf eine Zusammenarbeit zwischen Patienten und Pflegenden hin. Zuwiderhandlung der Patienten wird als Mangel an Verständnis von Seiten des Pflegepersonals gesehen, das die Bedeutung, die die Behandlung für Patienten hat, nicht einzuschatzen weiss. Die Behandlung wird nur dann den grösstmöglichen Erfolg bringen, wenn die Patienten daran teilnehmen. Wenn Patienten nicht als gleichberechtigte Partner angesehen werden, deren Meinungen gehört und respektiert werden, ist die Pflege höchstens patemalistisch. (shrink)

En dépit des réformes dites libérales des années 1860, l'Empire russe resta tout au long du XIX e siècle un empire dont le souverain s'intitulait officiellement : « Tsar et Autocrate de toutes les Russies ». L'autocratie différait fortement de la monarchie française d'Ancien Régime, qu'embarrassaient et que contenaient mille traditions et reliques du passé : droit coutumier et droit romain, vieilles lois de sources diverses toujours en vigueur, privilèges, prérogatives, immunités, franchises, exceptions et exemptions, Église indépendante, etc. Dans le (...) système russe du « césaropapisme », l'empereur faisait également office de souverain pontife de la religion orthodoxe : il en était le « défenseur et gardien ». - En 1881, le tsar Alexandre II fut tué dans un attentat, alors que l'octroi d'une Constitution semblait imrm'nent. Son règne avait été marqué par une série de réformes, dont la plus célèbre (1861) est celle qui avait émancipé les paysans serfs. Constantin Pétrovitch Pobedonostsev (1827-1907), célèbre juriste et homme d'État russe, qui avait été le précepteur des fils d'Alexandre II, va alors devenir le principal représentant d'une politique de contre-réformes, d'une politique refusant que soit faite la moindre concession aux idées libérales. Nommé par Alexandre III procureur du Saint-Synode, il exercera une influence prépondérante en Russie pendant la première partie du règne de ce tsar (c'està-dire de 1881 à 1887). Certains de ses écrits, pamphlets ou manifestes ont été réunis dans un Recueil de Moscou, paru en 1896. Nous y verrons Pobedonostsev dénoncer une à une toutes les institutions qui pourraient, si jamais elles étaient importées d'Occident, limiter les prérogatives du tsar autocrate : séparation de l'Église et de l'État ; suffrage universel et discours sur la prétendue souveraineté du peuple ; instruction gratuite et obligatoire, impliquant une limitation du travail des enfants ; liberté de la presse et invocation constante de l' « opinion publique » ; institution (à l'anglaise) de jurys populaires dans les tribunaux. - Mais nous aurons la surprise de trouver également, dans ce même Recueil de Moscou, un catalogue très raisonné des principales « pathologies » qui, selon Pobedonostsev, accompagnent nécessairement un régime de démocratie représentative : corruption des représentants ; combinaisons et tractations incessantes entre les partis ; indifférentisme massif et hypertrophie du moi personnel chez les électeurs ; omniprésence d'une presse dépourvue de tout mandat électif et parlant cependant au nom du public ; etc. Un tel catalogue constitue à n'en pas douter ce que l'œuvre de Pobedonostsev, ce réactionnaire « sur toute la ligne », contient de moins inactuel. (shrink)

Le cours de Schelling sur le Monotheisme, discretement polemique ( a l'egard de Schleiermacher et surtout de Hegel), enseigne a Munich a partir de 1828, forme dans l'edition posthume le porche de la Philosophie de la mythologie. Cette situation due a l'editeur n'est pourtant pas pleinement satisfaisante. Car alors le Monotheisme fait double emploi avec l'Introduction historico-critique a la Mythologie, avec laquelle il a sans doute alterne selon les semestres. Or l'elaboration parallele de l'expose de l'empirisme philosophique (Darstellung) et, plus (...) tardive, de la Philosophie rationnelle a retenti dans l'intervalle sur la signification du Monotheisme. La distinction de plus en plus accusee d'un negatif rationnel et d'un positif historique englobe desormais celle de la Mythologie ou du paganisme et de la Revelation ou du christianisme. A la philosophie negative revient la dignite de philosophie premiere. La mythologie, des lors coloree negativement, projette ses effigies de neant, mais comme des prefigurations de l'avenir. La refonte successive des seules versions de l'Introduction a la Revelation confere au cours sur le Monotheisme une certaine autonomie. Dans la ligne ideale d'un developpement synchronise, le Monotheisme occupe, bien que relativement en porte-a-faux, l'emplacement charniere, le point delicat d'amorcage de la philosophie historique, documentee. La presentation du Monotheisme comme theogonie transcendantale et theorie des principes ou puissances est en outre le plus simple et le plus clair de tous les textes de Schelling traitant du probleme de la transition. (shrink)