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)

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)

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)

_Covert treatment raises a number of ethical and practical issues in psychiatry. Viewpoints differ from the standpoint of psychiatrists, caregivers, ethicists, lawyers, neighbours, human rights activists and patients. There is little systematic research data on its use but it is quite certain that there is relatively widespread use. The veil of secrecy around the procedure is due to fear of professional censure. Whenever there is a veil of secrecy around anything, which is aided and abetted by vociferous opposition from some (...) sections of society, the result is one of two: 1) either the activity goes underground or 2) it is reluctantly discarded, although most of those who used it earlier knew it was needed. Covert treatment has the dubious distinction of suffering both such secrecy and disapproval. Covert treatment has a number of advantages and disadvantages in psychotic disorders. The advantages are that it helps solve practical clinical problems; prevents delays in starting treatment, which is associated with clinical risks and substantial costs; prevents risk of self-destructive behaviour and/or physical assault by patient; prevents relapse; and prevents demoralization of staff. The disadvantages are that it maybe used with malafide intent by caregivers with or without the complicity of psychiatrists; it may be used to force conformity in dissenters; and the clinician may land himself in legal tangles even with its legitimate use. In addition, it may prevent insight, encourage denial, promote unhealthy practices in the treating staff and prevent understanding of why noncompliance occurs in the first place. Some support its use in dementia and learning disorders but oppose it in schizophrenia. The main reason is that uncooperative patients of schizophrenia (and related psychoses) are considered to be those who refuse treatment but retain capacity; while in dementia and severe learning disorder, uncooperative patients are those who lack capacity. This paper disputes this contention by arguing that although uncooperative patients of schizophrenia (and related psychoses) apparently retain capacity, it is limited, in fact distorted, since they lack insight. It presents the concept of insight-unconsciousness in a patient of psychosis. Just as an unconscious patient has to be given covert medical/surgical treatment, similarly an insight-unconscious patient with one of the different psychoses (in the acute phase or otherwise) may also have to be given covert treatment till he regains at least partial insight. It helps control psychotic symptoms and assists the patient in regaining enough insight to realize he needs treatment. Another argument against covert treatment is that people with schizophrenia have the capacity to learn and therefore can learn that they are required to take medications, but if medications are given covertly it may well fuel their paranoia. However, it should be noted that the patient who has lack of insight cannot learn unless he regains that insight, and he may need covert treatment to facilitate this process. Covert treatment can fuel the paranoia, true, but it can also control the psychotic symptoms sufficiently so that regular treatment can be initiated. In a patient who refuses to accept that he is sick and when involuntary commitment is not an option to be considered, covert treatment is the only option, apart from physical restraint. Ultimately, a choice has to be made between a larger beneficence (control of symptoms and start of therapy) and a smaller malevolence (necessary therapy, but without the patient's knowledge and consent). A number of practical clinical scenarios are outlined wherein the psychiatrist should adopt covert treatment in the best interests of the patient. Ethical issues of autonomy, power, secrecy and malafide intent arise; each of these can be countered only by non-malfeasance (above all, do no harm) under the overarch of beneficence (even above that, dare to care). An advance directive with health care proxy that sanctions covert treatment is presented. Questions raised by the practical clinical scenarios are then answered. The conclusions are as follows: covert treatment, i.e, temporary treatment without knowledge and consent, is seldom needed or justified. But, where needed, it remains an essential weapon in the psychiatrist's armamentarium: to be used cautiously but without guilt or fear of censure. However, the psychiatrist must use it very judiciously, in the rarest of rare cases, provided: i) he is firmly convinced that it is needed for the welfare of the patient; ii) it is the only option available to tide over a crisis; iii) continuing efforts are made to try and get the patient into regular psychiatric care; iv) the psychiatrist makes it clear that its use is only as a stop-gap; v) he is always alert to the chances of malevolence inherent in such a process and keeps away from conniving or associating with anything even remotely suspicious; and vi) he takes due precautions to ensure that he does not land into legal tangles later. The need of the hour is to explore in greater detail the need and justification for covert treatment, to lay out clear and firm parameters for its legitimate use, follow it up with standard literature and, finally, to establish clinical practice guidelines by unconflicted authors. The term "covert treatment" is preferable to "surreptitious prescribing"; they should not be used synonymously, the latter term being reserved for those cases where there is malafide intent._. (shrink)

The High Court continues to exercise its inherent jurisdiction to make declarations about interventions into the lives of situationally vulnerable adults with mental capacity. In light of protective responses of health care providers and the courts to decision-making situations involving capacitous vulnerable adults, this paper has two aims. The first is diagnostic. The second is normative. The first aim is to identify the harms to a capacitous vulnerable adult’s autonomy that arise on the basis of the characterisation of situational (...) vulnerability and autonomy as fundamentally opposed concepts or the failure to adequately acknowledge the conceptual relationship between them at common law. The second part of this aim is to draw upon developments in analytic feminist philosophy to illustrate how standard approaches to autonomy are ill-equipped to capture the autonomy issues of capacitous vulnerable adults when their decisions regarding care and treatment are at stake. The second (normative) aim is to develop an account of self-authorised, intersubjective autonomy on the basis of analytic feminist insights into the relational practices of recognition. This account not only attempts to capture the autonomy of capacitous vulnerable adults and account for the necessary harms to their autonomy that arise from standard common law responses to their situational vulnerability, it is also predicated on the distinctions between mental capacity, the satisfaction of conditions for informed consent and the exercise of autonomy, meaning that it is better placed to fulfil the primary aim of the inherent jurisdiction – to facilitate the autonomy of vulnerable adults with capacity. (shrink)

This chapter contains sections titled: The Moral Foundation The Legal Requirement for Consent in Therapeutic Settings The Exceptions References.

Background: In psychiatry, the issue of providing palliative and end-of-life care for what would be a “terminal psychiatric condition” or considering a palliative approach to severe and persistent mental health problems is still a taboo. Methodology: This question is addressed through an analysis of a case arising during a clinical ethics consultation, using Hubert Doucet’s scenario method. It is about Mrs. Sanchez, a patient over 90 years of age with a psychiatric profile, expressing the desire to die by suicidal (...) gestures, refusing the proposed treatments, and refusing as well to drink and eat. Her clinical history is told through the filter of reflexive support offered in clinical ethics to the various stakeholders. Results: The case analysis, far from responding to the challenges posed by the concept of palliative and end-of-life care in a psychiatric context, nevertheless presents an opportunity to name its main ethical issues: psychic suffering, refusal to eat and drinking as well as refusal of treatment, palliative sedation and medical assistance in dying, wishes and advanced medical directives and clinical-organizational challenges for geriatric psychiatry clients. Conclusion: There are still many challenges for professionals and decision-makers to meet the needs of older mental health clients. We call for further development of knowledge on this specific topic. (shrink)

Ethical issues in the care of elderly people have been identified in many countries. We report the findings of a comparative research project funded by the European Commission, which took place between 1998 and 2001. The project explored the issues of autonomy (part I), privacy (part II) and informed consent (part III) in nursing practice. Data were collected from elderly residents/patients (n = 573) and nursing staff (n = 887) in five European countries: Finland, Spain, Greece, Germany and the (...) UK (Scotland). Questionnaires were used as the data collection tool (self-completion questionnaires for staff, structured interviews for the elderly participants). Four basic nursing interventions in the care of elderly people were targeted: hygiene, fluid intake and nutrition, medication, and elimination. The data were analysed statistically. The results indicated differences within all five countries between staff and patient perceptions of autonomy, privacy and informed consent. There were also similar differences between individual countries. Conclusions were reached concerning practice, education and research. This is the first of a set of five articles published together in this issue of Nursing Ethics in which the results of this comparative research project are presented. (shrink)

The categorical denial of third-party forgiveness represents an overly individualistic approach to moral repair. Such an approach fails to acknowledge the important roles played by witnesses, bystanders, beneficiaries, and others who stand in solidarity to the primary victim and perpetrator. In this paper, I argue that the prerogative to forgive or withhold forgiveness is not universal, but neither is it restricted to victims alone. Not only can we make moral sense of some third-party acts and utterances of the form, (...) “I can or cannot forgive…” but also, we ought to recognize them as legitimate instances of third party forgiveness. Concern for the primary victim’s autonomy tends to exaggerate a need for moral deference, while ignoring how others are called upon to support and mediate for victims of violence and oppression. I advocate a cautious extension of the victim’s prerogative to forgive, one that grounds forgiveness in a double relation of sympathetic identification and attentive care. Following Jean Harvey’s recent work, I call this relationship moral solidarity. Furthermore, I argue, there are important moral and political reasons to acknowledge third party forgiveness; these reasons are particularly evident in contexts of oppression. In fact, third party refusals to forgive may have particular moral significance. In situations of abuse, oppression and damaged self-respect, third party refusals may protect the agency of victims who too easily forgive. (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)

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)

Background: The management of challenging behaviours in inpatient with intellectual disability and/or autism spectrum disorders can lead to an escalation of control measures. In these complex situations where patients have an intellectual disability/autism spectrum disorder accompanied by a psychiatric comorbidity, the experiences of caregivers related to the crisis management have rarely been studied. Purpose: This study examined the moral experiences of caregivers related to challenging behaviours’ management and alternatives to control measures. Research design: Using Charles Taylor’s hermeneutic framework, a 2-month (...) focused ethnography with a participatory approach was used. Participants and research context: Sixteen caregivers were interviewed in a Canadian mental health setting for adults with intellectual disability/autism spectrum disorder and psychiatric comorbidity. Ethical considerations: The research was conducted in compliance with the Declaration of Helsinki and local Research Ethics Board approval. Written informed consent was collected systematically from participants. Findings: By accounting for caregivers’ moral experiences, this study sheds light on a neglected dimension of the care relationship: the vulnerability of the caregiver. We highlight the main barriers and facilitators to alternatives to control measures. First, a caregiver’s vulnerability was characterised by the overall impact of challenging behaviours and the moral distress associated with the use of control measures and exclusion mechanisms of intellectual disability/autism spectrum disorder patients. Second, a strong ambiguity between care and control measures and a lack of inclusive approaches were identified as the two main barriers to challenging behaviour management. Third, the involvement, both professional and personal, of caregivers was deemed necessary to implement alternatives to control measures. Discussion: A conflict of values opposes two conceptions of autonomy: a rational autonomy, which is counterproductive to the reduction of control measures, versus a relational autonomy based on shared vulnerability. Conclusion: The recognition of caregiver’s vulnerability is a benchmark to create alternative approaches, which defuse the logic of control and promote an ethics of care within which caregivers’ self-concern can be understood as fostering mutual respect. (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. (shrink)

Background: Ideas of patient involvement are related to notions of self-determination and autonomy, which are not always in alignment with complex interactions and communication in clinical practice. Aim: To illuminate and discuss patient involvement in routine clinical care situations in nursing practice from an ethical perspective. Method: A case study based on an anthropological field study among patients with advanced cancer in Denmark. Ethical considerations: Followed the principles of the Helsinki Declaration. Findings: Two cases illustrated situations where nurses (...) refused patient involvement in their own case. Discussion: Focus on two ethical issues, namely ‘including patients’ experiences in palliative nursing care’ and ‘relational distribution of power and knowledge’, inspired primarily by Hannah Arendt’s concept of thoughtlessness and a Foucauldian perspective on the medical clinic and power. The article discusses how patients’ palliative care needs and preferences, knowledge and statements become part of the less significant background of nursing practice, when nurses have a predefined agenda for acting with and involvement of patients. Both structurally conditioned ‘thoughtlessness’ of the nurses and distribution of power and knowledge between patients and nurses condition nurses to set the agenda and assess when and at what level it is relevant to take up patients’ invitations to involve them in their own case. Conclusion: The medical and institutional logic of the healthcare service sets the framework for the exchange between professional and patient, which has an embedded risk that ‘thoughtlessness’ appears among nurses. The consequences of neglecting the spontaneous nature of human action and refusing the invitations of the patients to be involved in their life situation call for ethical and practical reflection among nurses. The conditions for interaction with humans as unpredictable and variable challenge nurses’ ways of being ethically attentive to ensure that patients receive good palliative care, despite the structurally conditioned logic of healthcare. (shrink)

Background: Sharing information with relatives of elderly patients in primary care and in hospital has to fit into the complex set of obligations, justifications and pressures concerning the provision of information, and the results of some studies point to the need for further empirical studies exploring issues of patient autonomy, privacy and informed consent in the day-to-day care of older people.Objectives: To know the frequency with which “capable” patients over 65 years of age receive information when admitted (...) to hospital, the information offered to the families concerned, the person who gives consent for medical intervention, and the degree of satisfaction with the information received and the healthcare provided.Method: A descriptive questionnaire given to 200 patients and 200 relatives during the patients’ stay in hospital.Results: Only 5% of patients confirmed that they had been asked whether information could be given to their relatives. A significantly higher proportion of relatives received information on the successive stages of the care offered than did patients themselves. As the age of the patients increased, so the number who were given information, understood the information and were asked for their consent for complementary tests decreased. The degree of satisfaction with the information offered was high for both patients and relatives , despite the irregularities observed.Conclusions: The capacity of elderly patients to participate in the decision-making process is frequently doubted simply because they have reached a certain age and it is thought that relatives should act as their representatives. In Spain, the opinion of the family and doctors appears to play a larger role in making decisions than does the concept of patient autonomy. (shrink)

This study aims to describe social network and social participation and to assess associations with depressive symptoms in older persons with increased risk for dementia in Germany. We conducted a cross-sectional observational study in primary care patients (aged 60-77) as part of a multicenter cluster-randomized controlled trial (AgeWell.de). We present descriptive and multivariate analyses for social networks (Lubben Social Network Scale and subscales) and social participation (item list of social activities) and analyze associations of these variables with depressive (...) symptoms (Geriatric Depression Scale). Of 1030 included patients, 17.2% were at risk for social isolation (Lubben Social Network Scale < 12). Looking at the subscales, a reduced non-family network was found almost twice as often as a reduced family network. Patients with depressive symptoms had significantly smaller social networks than patients without depression (p < 0.001). They rather engaged in social activities of low involvement level or no weekly social activity at all (p < 0.001). The study shows associations of depressive symptoms with a decreased social network and less social participation in elderly participants. Sufficient non-family contacts and weekly social activities seem to play an important role in mental health and should be encouraged in elderly primary care patients. (shrink)

Background: Medical confidentiality underpins the doctor–patient relationship and ensures privacy so that intimate information can be exchanged to improve, preserve, and protect the health of the patient. The right to information applies to the patient alone, and, only if expressly desired, can it be extended to family members. However, it must be remembered that one of the primary tenets of family medicine is precisely that patient care occurs ideally within the context of the family. There may be, then, (...) certain occasions when difficulties will arise as to the extent of the information provided to family members.Objectives: This study aimed to describe family doctors’ attitudes to confidentiality and providing patient information to relatives as well as their justifications for sharing information.Method: A descriptive postal questionnaire was self-administered by family doctors.Results: Of 227 doctors, 95.1% provided information to a patient’s family and over a third disclosed information to others without prior patient consent.Conclusions: The findings reveal that family doctors should pay more attention to their patients’ rights to information, privacy, and confidentiality, and reflect very carefully on the fine balance between this and the occasional need for the support and collaboration of family members in delivery of care. Emphasis should be placed on ethics and legal problems during undergraduate education and in-service training of doctors. (shrink)

Nonadherence to treatment continues to be one of psychiatry's greatest challenges. To improve adherence and thus improve the care of patients, clinicians and patients' family members sometimes resort to hiding medication in food or drink, a practice referred to as covert/ surreptitious medication. The practice of covert drug administration in food and beverages is well known in the treatment of psychiatrically ill world-wide but no prevalence rates exist. Covert medication may seem like a minor matter, but it touches on (...) legal and ethical issues of a patient's competence, autonomy, and insight. Medicating patients without their knowledge is not justifiable solely as a shortcut for institutions or families wishing to calm a troublesome patient and thus alleviate some of the burdens of care giving. The paramount principle is ensuring the well-being of a patient who lacks the competence to give informed consent. Ethically, covert/surreptitious administration can be seen as a breach of trust by the doctor or by family members who administer the drugs. Covert medication contravenes contemporary ethical practice. Legally, treatment without consent is permissible only where common law or statute provides such authority. The practice of covert administration of medication is not specifically covered in the mental health legislation in developing countries. Many of the current dilemmas in this area have come to public attention because of two important developments in medical ethics and the law - the increasing importance accorded to respect for autonomy and loss of the parens patriae jurisdiction of the courts [parens patriae means 'parent of the country'; it permitted a court to consent or refuse treatment on behalf of an 'incapacity', or alternatively to appoint a guardian with such powers]. (shrink)

BackgroundPsychiatric staff members have the power to decide the options that frame encounters with patients. Intentional as well as unintentional framing can have a crucial impact on patients’ opportunities to be heard and participate in the process. We identified three dominant ethical perspectives in the normative medical ethics literature concerning how doctors and other staff members should frame interactions in relation to patients; paternalism, autonomy and reciprocity. The aim of this study was to describe and analyse statements describing real work (...) situations and ethical reflections made by staff members in relation to three central perspectives in medical ethics; paternalism, autonomy and reciprocity.MethodsAll staff members involved with patients in seven adult psychiatric and six child and adolescent psychiatric clinics were given the opportunity to freely describe ethical considerations in their work by keeping an ethical diary over the course of one week and 173 persons handed in their diaries. Qualitative theory-guided content analysis was used to provide a description of staff encounters with patients and in what way these encounters were consistent with, or contrary to, the three perspectives.ResultsThe majority of the statements could be attributed to the perspective of paternalism and several to autonomy. Only a few statements could be attributed to reciprocity, most of which concerned staff members acting contrary to the perspective. The result is presented as three perspectives containing eight values.•Paternalism; 1) promoting and restoring the health of the patient, 2) providing good care and 3) assuming responsibility.•Autonomy; 1) respecting the patient’s right to self-determination and information, 2) respecting the patient’s integrity and 3) protecting human rights.•Reciprocity; 1) involving patients in the planning and implementation of their care and 2) building trust between staff and patients.ConclusionsPaternalism clearly appeared to be the dominant perspective among the participants, but there was also awareness of patients’ right to autonomy. Despite a normative trend towards reciprocity in psychiatry throughout the Western world, identifying it proved difficult in this study. This should be borne in mind by clinics when considering the need for ethical education, training and supervision. (shrink)

Background: Caregivers and administrators in long-term facilities have fragile moral work in caring for residents with dementia. Residents are susceptible to barriers and vulnerabilities associated with the most intimate aspects of their lives, including how they express themselves sexually. The conditions for sexual agency are directly affected by caregivers’ perceptions and attitudes, as well as facility policies. Objective: This article aims to clarify how to approach capacity determinations as it relates to sexual activity, propose how to theorize about patient autonomy (...) in this context, and suggest some considerations for finding an ethically responsible and practically feasible way to respect the sexual rights of this population. Research Design: The focus is on residents with early to moderate dementia in states of daily dependency on professional caregivers. The article critically examines existing empirical research on sexuality among persons with dementia, caregivers’ attitudes, and institutional roadblocks to enabling residents’ sexuality. A relational lens and insights from disability studies are used in the philosophical analysis. Participants and Research Context: No research participants were part of this analysis. Ethical Considerations: This article offers a conceptual analysis and normative framework only. Findings: The analysis highlights the delicate balance that capacity assessments for sexual activity have to strike; while caregivers should protect those who cannot give adequate consent, the denial of sexuality among residents can cause deep, long-ranging harms. Sexual agency features into an ongoing sense of self for many individuals with dementia, and the imposition of inappropriate standards and expectations for sexual autonomy can lead to unwarranted obstacles to sexual activity. Discussion: Recommendations include developing clear and inclusive institutional policies and practices of care, providing education for caregivers on how to discuss and document residents’ sexual preferences over time, and taking advantage of ethics consultation services. Conclusion: This analysis establishes the need for more research and discussion on this sensitive topic. Future research should investigate the specific responsibilities of caregivers in furthering the sexual interests of residents, how exactly to modify existing capacity instruments, and how best to support historically marginalized patients in their sexual identities. (shrink)

While protection of autonomy is crucial to the practice of medicine, there is the persistent risk of a disconnect between the notion of self-determination and the need for a socially responsible medical system. An example of unbridled autonomy is the preferential use of costly medications without an appreciation of the impact of using these more expensive drugs on the resource pool of others. In the USA, costly medications of questionable incremental benefit are frequently prescribed with the complicity of (...) both doctors and patients. Limiting self-determination in medication choices via an appreciation of the principle of justice reaches a better moral balance, while at the same time acknowledging the goals of doing good and avoiding harm in patient care. (shrink)

Caregiving robots are often lauded for their potential to assist with geriatric care. While seniors can be wise and mature, possessing valuable life experience, they can also present a variety of ethical challenges, from prevalence of racism and sexism, to troubled relationships, histories of abusive behavior, and aggression, mood swings and impulsive behavior associated with cognitive decline. I draw on Confucian ethics, especially the concept of filial piety, to address these issues. Confucian scholars have developed a rich set (...) of theoretical resources for dealing with beloved but imperfect elders, and navigating the challenges of supporting seniors whose ethical commitments are unreliable. These resources provide a way to reconcile two important but conflicting desiderata: to value and care for seniors, but also to clear-mindedly deal with their moral shortcomings. In particular, they articulate a duty to remonstrate with our elders when they err. Confucian filial piety can helpfully inform robot design and use in geriatric care. They can be used to strengthen and protect emotional connections in important relationships, but should not be used to reinforce patient preferences when doing so damages relationships or their ability to act morally. Rather than conceive of patient wellbeing as in tension with moral behavior, and care as a burden for caregivers, not a source of value and meaning, Confucian accounts of filial piety help identify both new areas of concern and new potential in the development of caregiving technologies, ones which see these goods as complementary. (shrink)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the (...) bioethics literature, which focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

Twenty-five long-term care nurses in eight nursing homes in central Kentucky were inter viewed concerning ways in which they might assist elderly residents to preserve and enhance their personal autonomy. Data from the interviews were analysed using grounded theory methodology. Seven specific categories of assisting were discovered and described: personalizing, informing, persuading, shaping instrumental circumstances, considering, mentioning opportunities, and assessing causes of an impaired capacity for decision-making. The ethical implications of these categories of assisting for clinical prac tice are (...) examined. Although nurses recognized the importance of resident autonomy, the majority of them failed consistently to employ the categories of assistance to foster resi dent self-determination and most of them held an inadequate understanding of the con cepts of consent and decisional capacity. To assure confidentiality, pseudonyms are used in the following cases and discussions for all names of nurses, residents and facilities. (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)

In medical care, the obtaining of informed consent is taken to be required prior to treatment in order to ensure that patients sufficiently understand the potential risks and benefits of a given medical procedure. In this paper, I begin by looking at the history of informed consent and consider how the norms and laws in medicine have evolved away from benevolent paternalism and toward a blanket obligation to obtain informed consent. In so doing, I consider what values might be (...) taken to underpin such a requirement. After dismissing some unsatisfactory answers, I offer a positive view as to the constellation of values I think informed consent ought to be protecting. I call these bodily self-sovereignty, which I take to be a coupling of two groups of values: autonomy and non-domination on the one hand, and self-ownership and personal integrity on the other. Given the connection between autonomy and responsibility, autonomy is both required for the act of consenting, and respected by allowing it. And, because of our special and inescapable relationship to our own bodies, this authorization is particularly important when our bodies are involved. So, I suggest that informed consent protects our self-sovereignty over our own bodies. (shrink)

The increase in life expectancy in developed countries has lead to an increase in the number of elderly people cared for in nursing homes. Given the physical frailty and deterioration of mental capacities in many of these residents, questions arise as to their autonomy and to their protection from harm. In 2005, one of the highest German courts, the Bundesgerichtshof issued a seminal judgement that dealt with the obligations of nursing homes and with the preserving of autonomy and privacy (...) in nursing home residents. An elderly woman had sustained a fracture of the neck of the femur during a fall. The health insurance company held that the nursing home had breached its obligations to protect her from falling and sued the home for the hospital costs of her treatment. However, the BGH maintained that the case of the health insurance was not justified. It held that obligations of nursing homes have to be limited to normal arrangements within reasonable financial and personal effort, and that the autonomy of residents had to be protected from unnecessary interference. Permanent control or even restraining measures to reduce each risk would deprive the patient fully of her autonomy, and must therefore be hindered. Other judgments of other courts have emphasised the “protectionist” approach. The article deals with these different approaches and comments on both rationales. It will be shown that both approaches must be differentiated to establish fully autonomy and protection for nursing home residents. (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)

According to the High Court in England and Wales, the primary purpose of legal interventions into the lives of vulnerable adults with mental capacity should be to allow the individuals concerned to regain their autonomy of decision making. However, recent cases of clinical decision making involving capacitous vulnerable adults have shown that, when it comes to medical law, medical ethics and clinical practice, vulnerability is typically conceived as opposed to autonomy. The first aim of this paper is to detail (...) the problems that arise when the courts and health care practitioners respond to the vulnerability of capacitous adults on the basis of such an opposition. It will be shown that not only does the common law approach to vulnerability fail to adequately capture the autonomy of capacitous vulnerable adults, the conception of vulnerability and autonomy in oppositional terms leads to objectionably paternalistic health care responses that undermine the autonomy of vulnerable patients as well as clinical and legal interventions that violate their autonomy. In response, the second aim of this paper is to show that the concepts of autonomy and vulnerability are necessarily entwined and, on that basis, the focus should be on promoting the autonomy of capacitous vulnerable adults where possible. In order to make this case, the paper explains the limitations of standard approaches to the autonomy of vulnerable adults and, in their place, offers a conception of legitimate, self-authorised autonomy that is fundamentally dependent on intersubjective practices of recognition. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ought We to Require Emotional Capacity as Part of Decisional Competence?Paul S. Appelbaum* (bio)AbstractThe preceding commentary by Louis Charland suggests that traditional cognitive views of decision-making competence err in not taking into account patients’ emotional capacities. Examined closely, however, Charland’s argument fails to escape the cognitive bias that he condemns. However, there may be stronger arguments for broadening the focus of competence assessment to include emotional capacities, centering on (...) the ways in which emotions aid humans in processing information. Before emotional capacities are added to the list of functions essential for decisional competence, though, the feasibility and utility of such a reorientation must be demonstrated.To what extent ought persons’ capacities to experience emotion be taken into account when determining whether they should be deemed competent to make their own decisions? In the previous article, Louis Charland (1998) argues that traditional models of decision-making competence—of which the MacArthur Competence Treatment Study is a typical example—are mistaken in focusing narrowly on persons’ cognitive abilities to the neglect of emotional factors. In contrast, he suggests, constructs of competence ought explicitly to require a capacity to experience emotions, which he believes is central to meaningful decision making, before deeming persons competent.Charland, as he acknowledges, is not the first to suggest that the presence of some degree of emotional capacity is a necessary element of competence, but his argument is among the most elaborate to date and is certainly worth closer examination. Looked at carefully, however, Charland’s argument does not make quite the case for the determination of emotional capacity in competence assessment that he claims for it. Indeed, as I demonstrate below, Charland may share the same “pernicious [End Page 377] cognitive bias” that he ascribes to more traditional approaches. However, despite what I identify as the problems in Charland’s argument, others have raised more disturbing questions about the lack of attention to emotional issues in competence assessment. Thus, I am not ready to reject entirely the possibility that determinations of decisional competence ought to consider emotional factors. I conclude by outlining the questions that remain to be answered to identify more clearly the potential benefits of such an approach.The Construct of Decision-Making CompetenceSome preliminary comments about the nature of the dominant construct of decision-making competence may provide a useful frame for my response to Charland’s paper. Contemporary ideas of competence are tied inextricably to the ideal of self-determination in modern Western societies. Such societies are committed to respect for individual choice, both as a good in its own right and on the grounds that each person knows best what choices will maximize his or her own welfare. In general, therefore, states will not intervene to prevent persons from acting on their decisions, even when the choices they make—like the decision to smoke or to refuse potentially life-saving medical care—may objectively be thought to be detrimental to them.In some cases, however, the presumption that people will act in their own interests, as well as the notion that there is something intrinsically valuable in respecting their choices, fails (Buchanan and Brock 1989). When people’s minds are so disordered that they cannot be said to be making meaningful choices, other values come into play. Such people are called “incompetent.” When persons reach that point, the state’s interest in protecting its citizens becomes primary and someone else must make decisions on their behalf. Note that the size of this group must be sharply limited, lest a liberal society’s commitment to self-determination be undermined: There is no more profound infringement of the rights of citizens than the determination that they are incompetent. Thus, the criteria for incompetence must be selected in a deliberately narrow fashion—alternately, one might say that the standards for competence are made intentionally broad—so that all but a tiny percentage of citizens will be permitted to make decisions on their own.In the Anglo-American world, the process of formulating criteria of competence by and large has been left to the common law courts. Over the course of centuries they have identified the capacities that are, in... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Clinical CommentaryChong Siow Ann, Associate ProfessorDr. G appears to experiencing symptoms of schizophrenia, which is arguably the most severe mental disorder and which afflicts about one in a hundred people. This is a psychotic disorder that causes disturbances and distortions in thinking, including neurocognitive impairments, perception and behaviour. There is no cure for this often devastating disorder. Current antipsychotic medications can alleviate some of the symptoms but it often (...) comes at a price as these antipsychotics have burdensome side effects.A feature of this disorder is anosognosia, which is a lack of awareness or “insight” that an illness is present. This lack of insight presents a particular challenge because these individuals would, as in the case of Dr. G, refuse needed treatment as they do not perceive that they are ill. This is not necessarily an all-or-none phenomenon but is rather more complex and multidimensional; there might be an unawareness or recognition on behalf of the patient that they are suffering from a mental illness, the failure to appreciate the necessity of treatment; and/or the inability to recognise and define the psychotic symptoms like unusual thoughts and hallucinations as signs of illness1 and in many instances, all three are present. It is also by no means uncommon. Studies have found that between 60% and 80% of people with schizophrenia lack awareness of their illness to varying degrees.2This phenomenon remains an enigma. Some regard it as a form of psychological defence against the harsh reality of a psychotic illness — awareness of having a chronic and devastating illness might lead to demoralisation, hopelessness and suicide.3 Recent research, however, [End Page 250] indicates that this psychological denial plays a small part, if any, and instead has found an association with certain neuropsychological and neurocognitive deficits,4 as well as functional and structural brain abnormalities in the frontal lobe of the brain.5The prevailing clinical view thus is that this is an intrinsic and organic aspect of the schizophrenic illness which has nothing to do with wilfulness but rather the incapacity to perceive the presence of the illness. Edwin Fuller Torrey, an eminent psychiatrist and executive director of the Stanley Medical Research Foundation, calls anosognosia the “single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications”, and he has remarked that “to keep talking about civil liberty is illogical. Patients are anything but free when they’re at the beck and call of their own delusions”.6It is also this view that it is a product of a brain disorder that some — particularly patients — find unacceptable. At one level, it does not take into context the person’s own experiences, and at a deeper level it calls into question the conception of the self with its capacity to exercise judgements and the autonomy to make decisions.This is a perennial ethical issue in psychiatry when people with severe mental illnesses refuse treatment. This becomes a Catch-22 situation where part of the illness that needs treatment is also preventing any treatment to be given: implicit in the principle of informed consent for treatment is that the person should be aware of the nature and course of their illness and acknowledge the need for treatment. While there are laws for involuntary commitment, the bar is usually high in that there must be a clear and present risk of harm to the person or others. Alan Stone, a professor of law and psychiatry at Harvard University proposed a possible justification for involuntary treatment based on his “thank-you theory” which assumes that patients will become well and subsequently agree that the intervention was in their best interests but research suggests that only half of these patients would admit so.7One suggested mechanism is the use of advance directives — psychiatry’s version of the living will in which people can specify what sort of medical care they would like should they become mentally unwell and unable to exercise appropriate judgement. An intrinsic part of this might include a “Ulysses contract” — just as Ulysess instructed his crew to lash him to the mast of the his ship so that he could... (shrink)

This thesis addresses the tension in pragmatic cluster-randomized trials between their social value and the requirement to respect the autonomy of research participants. Pragmatic trials are designed to evaluate the effectiveness of treatments in real-world settings to inform clinical decision-making and promote cost-efficient care. These trials are often embedded into clinical settings and ideally include all patients who would receive the treatments under investigation as a part of routine care. Trialists increasingly adopt cluster-randomized designs—in which intact groups, such (...) as hospitals or clinics, are allocated randomly to study interventions—to simplify the inclusion of all patients. But including all-comers conflicts with the requirement to obtain written informed consent from research participants. Since informed consent is central to respecting patient autonomy, the question arises: how can the ends of autonomy and pragmatism be served simultaneously? Some philosophers argue that patients have an obligation to participate in clinical research and that this may negate consent requirements. I argue that while there may be grounds for a prima facie obligation for patients to participate in clinical research, no compelling argument has demonstrated that the obligation is enforceable. Others assert that broad application of a waiver of consent will facilitate the conduct of pragmatic cluster-randomized trials. I demonstrate that this proposal sharply conflicts with the historical origins of the waiver. I articulate a novel moral foundation for the use of a waiver of consent and show that when trials evaluate treatments delivered directly to patients, the autonomy interests at stake for participants are too substantial to permit its use. My solution draws a distinction between consent requirements in existing policy and consent as an autonomous authorization. As many pragmatic cluster-randomized trials are conducted in primary care settings with no research staff, I argue that patient autonomy can be promoted and protected using clinical-style consent, in which health providers seek verbal informed consent from patients and document it in the electronic health record. This approach has been associated with high rates of recruitment and, thus, may satisfy both requirements for social value and respect for autonomy. (shrink)

Since 1991, the Patient Self-Determination Act (PSDA) has required all health care institutions that receive Federal funds to inform patients upon admission of their rights to make decisions about medical care and to execute advance directives. Implementation of the PSDA presents a special challenge for state mental hospitals. The relevance and possible negative therapeutic impact of discussing end of life decisions at the time of an acute psychiatric admission has recently been raised in the literature. Other ethical (...) dilemmas arising from the interplay between mental illness and informed consent for medical treatment, particularly for older patients committed to state mental hospitals, have been highlighted by the PSDA. In this article we discuss some of the issues raised by implementation of the PSDA in this setting. (shrink)

Current legal standards of informed consent send the wrong message to physicians about their moral and legal expectations. A “transparency” model that sees consent as a conversation process can enhance good medical practice and patient autonomy without foreclosing appropriate judicial review.

Patient competence, defined as the ability to reason, appreciate, understand, and express a choice is rarely discussed in patients with obsessive compulsive disorder, and coercive measures are seldom used. Nevertheless, a psychiatrist of psychologist may doubt whether OCD patients who refuse treatment understand their disease and the consequences of not being treated, which could result in tension between respecting the patient’s autonomy and beneficence. The purpose of this article is to develop a notion of competence that is grounded in clinical (...) practice and corresponds with the experiences of patients with obsessions and/or compulsions. We present a naturalistic case study giving both the patient’s and the therapist’s perspective based on in-depth interviews and a narrative analysis. The case study shows that competence is not merely an assessment by a therapist, but also a co-constructed reality shaped by the experiences and stories of patient and therapist. The patient, a medical student, initially told her story in a restitution narrative, focusing on cognitive rationality. Reconstructing the history of her disease, her story changed into a quest narrative where there was room for emotions, values and moral learning. This fitted well with the therapist’s approach, who used motivational interventions with a view to appealing to the patient’s responsibility to deal with her condition. We conclude that in practice both the patient and therapist used a quest narrative, approaching competence as the potential for practical reasoning to incorporate values and emotions. (shrink)

The aim of this review was to analyse the empirical studies that focus on ethics in nursing care for older people, scoping the need and areas for further study. A search of the MEDLINE and CINAHL databases (earliest to August 2009) was conducted using the the keywords: ethic* and nursing or care or caring and elderly or aged or older. After a four-stage process, 71 empirical articles were included in the review, with informants ranging from elderly people to (...) relatives, caregivers, managers and students in care settings. The review focusses on the concepts, contexts, methods and validity of these studies. Based on the analysis, the reviewed research seems to be fragmented and multifaceted, focussing on selected issues such as autonomy, self-determination and informed consent. No large research programs or research traditions were found so it was not possible to draw any conclusions about suitable methods, study designs or instruments of measurement for use in this research area. (shrink)

Background: Neglect and abuse of elders in care institutions is a recurring issue in the media. Elders in care institutions are vulnerable due to their physical, cognitive, and verbal limitations. Such vulnerabilities may make them more susceptible to mistreatment by caregivers on whom they are heavily dependent. Objectives: The goal was to understand caregivers’ concerns about ensuring correct and proper treatment, as well as their experiences with neglect and abuse of older patients. This article examines resources and challenges (...) of professional ethics within the care setting. Research design: A study was conducted to explore the quality of care provided to older patients in nursing homes, geriatrics institutions, and ambulant care in the northwest region of Switzerland. Participants and research context: A total of 23 semi-structured interviews were conducted with nursing staff of varying experience levels. Ethical considerations: Ethical approval was granted by the competent regional ethics commission, Ethikkomission Nordwest-und Zentralschweiz EKNZ [Ethics Commission Northwest and Central Switzerland] (2014-015). Findings: Three themes emerged from our data analysis: professional identity, professional context, and professional relationships. Our findings indicate mutual vulnerabilities within these three themes, characterizing the interactions between nursing staff and older patients. Study participants believe that incidences of error, neglect, and abuse are consequences of their own vulnerability since they are not able to meet the demands of an overstraining work situation. Discussion: Different aspects of this mutual vulnerability are described and critically discussed as challenges for professional ethics. Conclusion: Early education, continuous training as well as better management and response from the institution are necessary to maintain professionalism while handling mutual vulnerabilities. (shrink)

Since its advent in the 20th century, informed consent has become a cornerstone of ethical healthcare, and obtaining it a core obligation in medical contexts. In my dissertation, I aim to examine the theoretical underpinnings of informed consent and identify what values it is taken to protect. I will suggest that the fundamental motivation behind informed consent rests in something I’ll call bodily self-sovereignty, which I argue involves a coupling of two groups of values: autonomy and non-domination on the (...) one hand, and self-ownership and personal integrity on the other. I will then go on to consider two 'case studies' I take to shed light on what is at stake in securing informed consent - consent in psychiatrically ill populations, and consent to interventions that involve the modification of the genetic germline. (shrink)

In English medical law, it is something of an axiom that adult competent patients have an absolute right to refuse all and any medical treatment, including potentially life-saving and life-sustaining treatment. This legal proposition, which is embedded in the doctrine of consent, has for the last few decades been regarded as the expression of the philosophical principle of personal autonomy and ethical right of self-determination. The Western ethical and legal traditions places heavy emphasis on notions of personal sovereignty reflected (...) in the strong rhetorical entrenchment of patient autonomy in judicial determinations of treatment refusal cases. In a spate of legal cases in the 1980s and 1990s judicial rhetoric .. (shrink)

Diagnosis of dementia in primary care is both difficult and important. The recommendations by several authors to improve the diagnosis of dementia by general practitioners are important, but insufficient. It is argued that perhaps the disease concept in itself is a cause of confusion for clinicians. Primary care physicians need an adapted procedure, gradually leading to the final diagnosis of dementia. It has to be a stepwise labelling strategy, using global descriptions and non-disease specific labels in (...) the beginning, ending up with well-defined disease criteria. In this process, there is circularity: previous diagnoses have to be kept in mind because symptoms and signs may gradually change during the progression of the disease, leading to reconsideration of previous deleted options. To frame this properly, the primary care physician needs to adopt a broad frail elderly geriatric concept. Implementation of this concept not only helps the diagnostic process, but also stimulates the care for dementing patients and their caregivers. Relevant arguments for early diagnostic involvement of primary care physicians can be put forward on condition that a new concept, adapted procedures and adapted instruments are used. (shrink)

While the movement to ensure patient’s rights to information and informed consent spreads throughout the world, patient rights of this kind have yet to be introduced in mainland China. Nonetheless, China is no different from other parts of the world in that nurses are expected to shoulder the responsibility of safeguarding patients’ best interests and at the same time to uphold their right to information. This paper expounds on the principle of protectiveness grounded in traditional Chinese medical ethics concerning the (...) practice of informed consent. Nurses in China have a moral obligation to treat patients with sincerity. This notion carries a strong sense of parental protectiveness. As far as information-giving is concerned, nurses in China are ambivalent about the notion of truthfulness. The findings of an empirical study undertaken in seven Chinese cities reveal that nurses in China experience similar difficulties related to the disclosure of information as their counterparts in other parts of the world. A nurse’s narrative, the Chan case, is used to illustrate the typical difficult situation that nurses in China often encounter in looking after vulnerable patients who would like to learn more about their therapeutic regimens. The moral tension embedded in nursing practice is analysed. It is found that most nurses would prefer to tell the truth to patients, but their primary ethical justification is not that of respect for patients’ autonomy or safeguarding patients’ right to self-determination. Rather, it is basically beneficent in nature; that is, they base their decision to reveal the truth on whether or not patients will receive more relevant treatment and better nursing care. (shrink)

This book proposes an alternative to the consent model which is currently at the heart of patient self-determination and which is shown here to have fundamental flaws that constrain its effectiveness. The proposed model is a property model in which the patient’s bodily integrity is protected from unauthorised invasion, and their legitimate expectation to be provided with the relevant information to make an informed decision is taken to be a proprietary right. This model enables the courts to overcome the (...) requirement to prove causation in consent cases and offers a complementary approach to patient self-determination. (shrink)

LANGUAGE NOTE | Document text in Chinese; abstract also in English. COVID-19疫情的爆發，突顯出公共健康倫理中自主性與公共健康之間的緊張關係。以“publichealth”、“ethics”、“autonomy”為主題詞在WebofScience核心合集數據庫中 進行文獻收集，借助CiteSpace6.1軟件進行信息可視化分析，發現2020年1月1日至2022年5月14日期間，生命倫理/公共健康倫理領域對於“自主性”概念的討論大體上集中在“知情同意”、“健康保 健政策"、“健康質量”、“信息技術”和“老年歧視/老年群體”範圍。本文在此基礎上提煉分析COVID-19疫情中的四個“自主性‘‘難題 如何避免以公共健康/公共利益為名過度限制自主性、在數字技術應用中如何保障自主性、如何保障老年群體的自主性和生命權，如何通過促進自主性來推動公共健康目標的實現。COVID-19疫情是一個重塑公共健康倫理 自主性概念的歷史契機。冷酷的病毒已經作為一種媒介把人類的命運緊密地聯繫起來，而基於關懷倫理和共同體倫理重塑的自主性概念則有望給疫情下的世界帶來團結、温暖和希望。 In the field of public health ethics, the COVID-19 pandemic has highlighted the tension between autonomy and public health. Using CiteSpace 6.1 software and information visualization analysis, we performed a search of literature in the Web of Science core collection database using thematic words such as “public health”, “ethics” and “autonomy”, we found that from January 1, 2020 to May 14, 2022, discussions on the concept of “autonomy” (...) within the field of bioethics/public health ethics were generally focused on the following topics: “informed consent”, “health care policy”, “health quality”, “information technology”, “ageism” and “elderly group”. In this paper, we distill and analyze four controversial issues: how can we avoid excessive restrictions on autonomy in the name of public health/public interest? How can we protect autonomy when using digital technology? How can we protect the autonomy and rights of the elderly? How can we advance the goals of public health by promoting autonomy? The COVID-19 pandemic is a unique historical opportunity to reshape the concept of autonomy within the field of public health ethics. Although the virus has bound the fate of humanity together, a reinvented concept of autonomy based on care and community ethics holds the promise of bringing solidarity, comfort, and hope to the world in the midst of the pandemic. (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)

The paper concerns the uncertainty in current propositions for the regulation of tissue donation. It focuses mainly on two statements issued in Germany. The scope of the paper is to give a systematic approach to ethical problems coming up in this field. Both statements try to maintain the idea of positive autonomy in regard to tissue donation, but their attempt eventually is forced to fail. Different procedures are proposed that most often are not practicable (because a truly “informed” consent is (...) impossible, or because optional models tend to overwhelm donors). Blanket consent is also proposed, but this form of consent cannot be seen as an expression of self-determination. Under the pretence of autonomy, donors are left alone with the task to control scientific research and to have their personal and property rights respected. Following this rather weak position of autonomy, in one statement there is a clear tendency to place the intrinsic value of research over the autonomy of the donor. In order to avoid this conclusion, autonomy has to be more than individual decision making. It has to be embedded in social and institutional rules which support and protect individual choice. If the benefits of research are supposed to lead to a common good and to satisfy public interests, then research has to be controlled through public institutions. Autonomy does not exclude institutional support, as institutional support is the only way to take the autonomy of donors seriously. (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)

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)

The decision to involuntary hospitalize a patient underlines an inherent contradiction in psychiatry between the need for care and the lack of consent to care. The growing importance of respect for...

Primary health care is characterised by timely and appropriate health care access, delivered continuously over time to a specific population, providing a comprehensive service, with coordination of care for those that need it. Practitioners deal with a multiplicity of clinical issues within longitudinal relationships, embedded in the context of families and communities. We propose that these aspects of primary care have a bearing on how matters of decision making are considered and implemented. Further, the (...) standard account of autonomous decision making is not wholly adequate when applied to clinician–patient encounters in primary care. We add considerations of the impact of illness (however defined) and self-identity as also relevant to a more measured and full account. The context of primary care is quite different from that of secondary care. Although there are generalists who work in hospitals, we argue that this aspect and the other attributes of primary care generate special ethical considerations. One of these is how autonomy, or more fully, how respect for the principle of autonomy is considered and operationalised in community practice. In this study, we describe some theoretical aspects of autonomy and seek to apply, and challenge, these aspects in the context of clinical work in primary care. In doing so we will review the descriptors of primary care: why in essence it is different from other contexts of clinical work. (shrink)