This chapter contains sections titled: Physician‐Assisted Suicide Refusing Life‐Saving Medical Treatment Organ Donation: Opt‐in or Opt‐out? Autonomy and the Body.

Respect for autonomy is typically considered a key reason for allowing physician assisted suicide and euthanasia. However, several recent papers have claimed this to be grounded in a misconception of the normative relevance of autonomy. It has been argued that autonomy is properly conceived of as a value, and that this makes assisted suicide as well as euthanasia wrong, since they destroy the autonomy of the patient. This paper evaluates this line of reasoning by investigating (...) the conception of valuable autonomy. Starting off from the current debate in end-of-life care, two different interpretations of how autonomy is valuable is discussed. According to one interpretation, autonomy is a personal prudential value, which may provide a reason why euthanasia and assisted suicide might be against a patient’s best interests. According to a second interpretation, inspired by Kantian ethics, being autonomous is unconditionally valuable, which may imply a duty to preserve autonomy. We argue that both lines of reasoning have limitations when it comes to situations relevant for end-of life care. It is concluded that neither way of reasoning can be used to show that assisted suicide or euthanasia always is impermissible. (shrink)

Respect for patients’ autonomy has taken a central place in the practice of medicine. Received wisdom holds that respect for autonomy allows overriding a patient’s treatment preferences only if the patient has been found to lack capacity. This understanding of respect for autonomy requires a dichotomous approach to assessing capacity, whereby a patient must be found either to have full capacity to make some particular treatment decision or must be found to lack capacity to (...) make that decision. However, clinical reality is more complicated, and, in borderline cases, different physicians may arrive at disparate judgments of capacity. In such cases, when capacity-determination protocols fail to achieve consensus, physicians would benefit from guidance regarding the clinical decision-making process necessary to elucidate the most ethically sound course of action. This article considers one such case and argues that, in a limited number of cases, respect for autonomy may require overriding a patient’s stated treatment preference when a capacity determination is equivocal, even though the patient has not clearly demonstrated a lack of capacity. (shrink)

Beauchamp and Childress have performed a great service by strengthening the principle of respect for the patient's autonomy against the paternalism that dominated medicine until at least the 1970s. Nevertheless, we think that the concept of autonomy should be elaborated further. We suggest such an elaboration built on recent developments within the neurosciences and the free will debate. The reason for this suggestion is at least twofold: First, Beauchamp and Childress neglect some important elements of (...) class='Hi'>autonomy. Second, neuroscience itself needs a conceptual apparatus to deal with the neural basis of autonomy for diagnostic purposes. This desideratum is actually increasing because modern therapy options can considerably influence the neural basis of autonomy itself.Sabine MNeuroScienceAndNorms: Ethical and Legal Aspects of Norms in Neuroimaging at Bonn University Hospital, Germany. Her main research interests are in neuroethics. She is coauthor of three German books about neuroethics and bioethics.Henrik Walter, M.D., Ph.D., is Full Professor of Medical Psychology at the University of Bonn, Germany, and vice-director of the Department of Psychiatry and Psychotherapy at the University Clinic of Bonn. He is author of Neurophilosophy of Free Will and editor of the book From Neuroethics to Neurolaw?. His research fields are biological psychiatry, cognitive neuroscience, neuroimaging, neurophilosophy, and neuroethics. (shrink)

Competent patients who refuse life saving medical treatment present a dilemma for healthcare professionals. On one hand, respect for autonomy and liberty demand that physicians respect a patient’s decision to refuse treatment. However, it is often apparent that such patients are not fully competent. They may not adequately comprehend the benefits of medical care, be overly anxious about pain, or discount the value of their future state of health. Although most bioethicists are convinced that partial autonomy (...) or marginal competence of this kind demands the same respect as full autonomy, Israeli legislators created a mechanism to allow ethics committees to override patients’ informed refusal and treat them against their will. To do so, three conditions must be satisfied: physicians must make every effort to ensure the patient understands the risks of non-treatment, the treatment physicians propose must offer a realistic chance of significant improvement, and there are reasonable expectations that the patient will consent retroactively. Although not all of these conditions are equally cogent, they offer a way forward to assure care for certain classes of competent patients without abandoning the principle of autonomy altogether. These concerns reach past Israel and should engage healthcare professionals wary that respect for autonomy may sometimes cause avoidable harm. (shrink)

Suppose that a young athlete has just become quadriplegic. He expects to live several more decades, but out of self‐interest he autonomously chooses to engage in physician‐assisted suicide (PAS) or voluntary active euthanasia (VAE). Some of us are unsure whether he or his physician would be acting rightly in ending his life. One basis for such doubt is the notion that persons have dignity in a Kantian sense. This paper probes responses that David Velleman and Frances Kamm have suggested (...) to the question of whether participating in PAS or VAE to benefit oneself, as the young man might, respects the dignity of persons, specified in an orthodox Kantian way. Velleman claims that it does not, while Kamm insists that, in certain circumstances, it does. I argue against Kamm's position. I go on to contend that while orthodox Kantianism might provide a basis for moral concern regarding the case of the young quadriplegic, it suffers from two serious shortcomings. First, it implies that terminally ill patients are wrong to request VAE or engage in PAS to avoid intense suffering, at least when this suffering has not yet overwhelmed their reason. Second, orthodox Kantianism implies that it is wrong for physicians to withdraw such patients from life‐sustaining treatments, even if they request it. To remedy these shortcomings, I sketch an unorthodox Kantian account of respect for the dignity of persons. This account promises to capture the idea that it would be morally problematic for doctors to help the young quadriplegic to die, but to avoid the shortcomings of an orthodox Kantian account. (shrink)

Theoretical models for patient-physician communication in clinical practice are frequently described in the literature. Respecting patient autonomy is an ethical problem the physician faces in a medical emergency situation. No theoretical physician-patient model seems to be ideal for solving the communication problem in clinical practice. Theoretical models can at best give guidance to behavior and judgement in emergency situations. In this article the premises of autonomous treatment decisions are discussed. Based on a case-report we discuss different genuine efforts the (...) physician can do to uncover treatment refusal and respect patient autonomy in an emergency situation. Autonomy requires competence and in emergency medicine time does not allow intimate exploration of patient competence and reasons for treatment refusal. We find that the physician must base her decision on a firm theoretical base combined with a practical and realistic view of the patient's situation on a case to case basis. (shrink)

In this paper, I set out two ethical complications for Rid and Wendler’s proposal that a “Patient Preference Predictor” (PPP) should be used to aid decision making about incapacitated patients’ care. Both of these worries concern how a PPP might categorize patients. In the first section of the paper, I set out some general considerations about the “ethics of apt categorization” within stratified medicine and show how these challenge certain PPPs. In the second section, I argue for a more specific—but (...) more contentious—claim that proper respect for the autonomy of incapacitated patients might require us to act on reasons which they could endorse and show how this claim places important limits on the categories employed by an ethically acceptable PPP. The conclusion shows how these concerns about apt categorization relate to more familiar worries about Rid and Wendler’s proposals. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Clinic as Testing Ground for Moral Theory: A European ViewHans-Martin Sass (bio)A Philosopher’s View of Theory in the Clinical SettingThe clinic is a testing ground for theories. I am not clinician; I am a philosopher who has been in the clinic only as a patient or as an ethicist who never has had the final word nor was ever intended to have the final word. I have learned (...) that in the clinical setting general norms and conceptualizations in the Kantian sense must be tailored to real-life situations. From the philosophical schools of analytical reasoning, I learned the skills needed to analyze words and meanings and to dissect problems and so-called “solutions.” But even more impressive are the methodological skills of differential diagnosis, looking at medical problems from different angles and using different methods and instruments. The detail- and patient-oriented work of the clinician provides an excellent model of methodological clarity and professional devotion for a philosopher who assists those working for the “good of the patient.” That model has led to the development of what I call a theory and methodology of differential ethics. [End Page 351]Differential ethics is normative ethics, as it does not give up norms in favor of situational utility. Differential ethics does not venture out empty-handed in order to explore and find principles pre-existing in a given situation; rather it brings basic values and principles along with it and tries to discover the shape they must take and the priority they must be given in the situation at hand. Differential ethics differentiates between general norms and mid-level principles, virtues, and visions that must be introduced and protected effectively and specifically according to different scenarios (Sass 1993). From this European point of view, I shall briefly explain my position and comment on (1) the controversy between principlism and virtue theory, (2) differentiating and balancing, and (3) the importance of trust, both as a principle and as a virtue in the clinical setting.Principlism Versus Virtue Theory: A Mistaken ControversyFrom a European perspective, I find that the debate between the schools of virtue-theory and principlism in the United States is a mistaken controversy. The real conflict between the schools of thought is not methodology, but content. Tom Beauchamp (1995) gives examples of how one language or method can be translated into the other, and Edmund Pellegrino and David Thomasma (1988, p. 206) have formulated a rule for the virtuous physician that, in the language of principlism, reads “respect for autonomy,” but in the language of virtue theory reads “To assist my patients to make choices that coincide with their own values or beliefs, without coercion, deception, or duplicity.”In different situations, however, some systems of reference are more authoritative and effective than others. Appealing to professional virtues would be the most efficacious way to address an audience coherent in attitudes and concerned about personal character. Reaffirmation of personal and professional obligations in secular fraternities or religious communities works best when it includes an appeal to virtues in the language of the humanist tradition, moral theology, or professional ethics.But there are other situations in which authoritative attitudes and expectations are absent and society in general is searching for common, often dormant, principles that will hold it together whatever specific disagreements arise. Such a situation was present in 1978 when the Belmont Report (National Commission 1978) presented principles—respect for autonomy, nonmaleficence, beneficence, justice—and not virtues to guide moral and political reflections on and reactions to the ethical, legal, and social implications of modern biomedicine in a multi-faceted and multi-cultural society.The formal difference between the systems of principlism, virtue theory, and value theory becomes even less important when clinical-ethical questionnaires are used to understand specific scenarios or cases and to assess different options for proceeding. Thus, my first thesis is: Case discussion, scenario assessment, [End Page 352] and open questionnaires, rather than definite guidelines, bridge the difference between virtue theory and principlism, since such processes can employ any one language or a combination of all three.Differentiating and BalancingMy second thesis is: Whatever system of reference is used... (shrink)

The moral discourse surrounding end-of-life (EoL) decisions is highly complex, and a comparison of Germany and Israel can highlight the impact of cultural factors. The comparison shows interesting differences in how patient’s autonomy and doctor’s duties are morally and legally related to each other with respect to the withholding and withdrawing of medical treatment in EoL situations. Taking the statements of two national expert ethics committees on EoL in Israel and Germany (and their legal outcome) as an example (...) of this discourse, we describe the similarity of their recommendations and then focus on the differences, including the balancing of ethical principles, what is identified as a problem, what social role professionals play, and the influence of history and religion. The comparison seems to show that Israel is more restrictive in relation to Germany, in contrast with previous bioethical studies in the context of the moral and legal discourse regarding the beginning of life, in which Germany was characterized as far more restrictive. We reflect on the ambivalence of the cultural reasons for this difference and its expression in various dissenting views on passive euthanasia and advance directives, and conclude with a comment on the difficulty in classifying either stance as more or less restrictive. (shrink)

PHOTO ID 121339257© Designer491| Dreamstime.com ABSTRACT When physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be apparent conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters future physicians’ commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. We use an ethical dilemma that was presented to a group of third-year medical students to examine how ethics education might (...) be causing them to give undue deference to autonomy, thereby undermining their commitment to beneficence. INTRODUCTION The right of patients to choose which treatments they prefer is rooted in today’s social mores and taught as a principle of medical ethics as respect for autonomy. Yet, when physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be a conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters a commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. I. An Ethical Dilemma The impetus for this paper arose when students who were completing their third clinical year discussed a real-life ethical dilemma. A middle-aged man developed a pulmonary hemorrhage while on blood thinners for a recently placed coronary stent. The bleeding was felt to be reversible, but the patient needed immediate intubation or he would die. The cardiologist was told that the patient previously expressed to other physicians that he never wanted to be intubated. However, the cardiologist made the decision to intubate the patient anyway, and the patient eventually recovered.[1] Students were asked if they believed that the cardiologist had acted ethically. Their overwhelming response was, “No, the patient should have been allowed to die.” We looked into how students applied ethical reasoning to conclude that this outcome was ethically preferred. To explore how the third-year clinical experience might have formed the students’ judgment, we presented the same case to students who were just beginning their third year. Their responses were essentially uniform in recommending intubation. While there is likely more than one reasonable view in this case, we agree with the physician and the younger medical students that intubation was the ethically appropriate decision and will present an argument for it. But first, we explain the reasoning behind the more advanced medical students’ decision to choose patient autonomy at the expense of beneficence. II. Medical Ethics Education and the Priority of Autonomy Beauchamp and Childress’s Principles of Biomedical Ethics, first published in 1979 and now in its 8th edition, is a significant part of the formal ethics education in medical school.[2] Students learn an ethical decision-making approach based on respect for four ethical principles: autonomy, beneficence, nonmaleficence, and justice. While Beauchamp and Childress officially afford no prima facie superiority to any principle, the importance of respect for patient autonomy has increased through the editions of their book. For example, early editions of their book opposed the legalization of physician-assisted death compared to recent editions that defended it.[3] As another example, Beauchamp and Childress make paternalism harder to justify by adding an autonomy-protecting condition to the list of conditions for acceptable paternalism.[4] Authority, they contend, need not conflict with autonomy—provided the authority is autonomously chosen.[5] “The main requirement,” they write, “is to respect a particular patient’s or subject’s autonomous choices, whatever they may be.[6] In the principlism of Beauchamp and Childress, autonomy now seems to have a kind of default priority.[7] However, the bioethics discourse has strong counternarratives, noting some movement to elevate the role of beneficence and to respect the input of stakeholders, including the family and the healthcare team. Ethics education achieves particular relevance in the third clinical year when students become embedded in the care of patients and learn from what has been called the informal curriculum. They observe how attending physicians approach day-to-day ethical problems at the patient’s bedside. In this context, students observe the importance of informed consent for serious treatments or invasive procedures, a practice that highlights the principle of patient autonomy. In both the formal and informal curriculum, medical students observe how, in the words of Paul Wolpe, “patient autonomy has become the central and most powerful principle in ethical decision-making in American medicine.”[8] In short, students appear to learn a deference for patient autonomy. This curricular shift in favor of autonomy coincides with legal developments that protect patients’ rights and decision-making with respect to their healthcare choices. The priority of autonomy in medicine benefits patients by reflecting their choices and, in some cases, their fundamental liberty. III. The Practice of Medicine and the Commitment to Beneficence There are many critiques of the dominant place that autonomy has in biomedical ethics,[9] especially considering that autonomy seems to be biased toward individualistic, Western, and somewhat American culture-driven values.[10] In addition, many bioethical dilemmas are cast as a conflict between autonomy and beneficence. Our point is that medical students bring to their study of medicine a commitment to beneficence that seems to be suppressed by practical ethics education. We think this commitment is rationally defensible and should be nurtured. It is striking that young medical students have a pre-reflective commitment to beneficence at all. For, as we mentioned, it is not just medicine but Western culture generally that prioritizes autonomy in settling ethical dilemmas. In wanting to act for the good of others (rather than simply agreeing to what others want), physicians are already swimming somewhat against the cultural tide.[11] However, doing so makes sense, given the nature of medicine and the profession of healing. When prospective medical students are asked why they wish to become physicians, the usual answer is some variation on caring for the sick and preventing disease. It is unlikely that a reason to become a physician is to respect a patient’s autonomy. It would be easy to dismiss medical students’ commitment to beneficence as a mere intuition and contrary to a more reasoned and deliberative approach. Beauchamp and Childress seem to minimize the value of physician intuition, stating that justifications for certain procedures are “…supported by good reasons. They need not rest merely in intuition or feeling.”[12] Henry Richardson writes that “situational or perceptive intuition…leaves the reasons for decision unarticulated.”[13] We think this is a crude and rather thin way of understanding intuition. Some bioethicists have defended intuition as essential to the practice of medicine and not something opposed to reason.[14] In the case we describe, we believe the ethical justifications s for the patient’s intubation are fundamentally sound: the patient did not have a “do not intubate” order written in the chart, the emergency intubation had not been foreseen, so the patient did not have the opportunity to consent to or reject intubation; the patient had consented to the treatment for his cardiac disease so his consent for intubation could have been assumed;[15] and the consequences of respecting his autonomy did not justify allowing him to die.[16] While it is possible to have more than one reasonable view on this case, we think the case for beneficence is strong and certainly should not be dismissed out of hand. We do not deny that if a patient makes a clearly documented, well-informed decision to forgo intubation that this decision ought to be respected by the physician (even if the physician disagrees with the patient’s decision). But, in this situation, as in many others in the practice of medicine, the patient’s real wishes and preferences are not well-articulated in advance. There are many cases where a physician acts based on what she believes the patient, or the surrogate, would want, sometimes in situations that do not allow much time for reflection. An example might be resuscitation of a newborn at the borderline of viability. In their ethics education, beneficence would mean acting first to save a life. If the patient or surrogate makes an informed decision to the contrary, a beneficent physician respects that autonomous decision. In the case presented, the patient expressed gratitude to the cardiologist when extubated. But what if he had expressed anger at the physician for violating his autonomy? There are those who could argue that not only was intubation ethically wrong but that the cardiologist put himself in legal jeopardy by his actions (especially if there had been a written refusal applicable to the specific situation). In the example we use, we point out that the cardiologist may not have escaped a lawsuit if the patient had died without intubation. His family, when hearing the circumstances, may have sued for failure to act and dereliction of the cardiologist’s duty to save him. Beyond a potential legal challenge for either action or inaction, there is an overriding ethical question the cardiologist had to address: what course would be most satisfying to his conscience? Would he rather allow a patient to die for fear of recrimination, or act to save his life, regardless of the personal consequences? In the absence of real knowledge about the patient’s considered wishes, it is most reasonable to err on the side of promoting patient well-being. A physician’s commitment to beneficence is not necessarily a way of undermining a patient’s autonomy. In acting for the patient's good, physicians are also acting on what it is reasonable to believe a patient (or most patients, perhaps) would want, which is obviously connected to what a patient does want. Pellegrino and Thomasma argue that beneficence includes respect for a patient’s autonomy since “the best interests of the patient are intimately linked with their preferences.”[17] Instead of conceptualizing ethical dilemmas in medicine as conflicts between autonomy and beneficence, it is possible that medical schools could teach students that truly practicing beneficence is a way of valuing patient autonomy, especially when the patient’s wishes are not specific to the situation and are not clearly expressed. CONCLUSION It is important for students and practicing physicians to understand the principle of respect for patient autonomy in a pluralistic society that demands personal self-determination. However, the role of the physician as a beneficent healer should not be diminished by this respect for autonomy. Respecting a patient’s autonomy is grounded in and manifested by physician beneficence.[18] That is, seeking what is good for the patient can only be good if it respects their personhood and dignity. We propose that a commitment to beneficence, incipient in young medical students, should be developed over time with their other clinical reasoning skills. Such a commitment need not be sacrificed on the altar of patient autonomy. Beneficence needs greater relative moral weight with students as they proceed in their ethics education. - [1] S. Jauhar, “When Doctors Need to Lie,” New York Times, February 22, 2014, https://www.nytimes.com/2014/02/23/opinion/sunday/when-doctors-need-to-lie.html. [2] T. L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019). [3] Louise A. Mitchell, “Major Changes in Principles of Biomedical Ethics,” The National Catholic Bioethics Quarterly 14, no. 3 (2014): 459–75, https://doi.org/10.5840/ncbq20141438. [4] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019), 238. [5] Beauchamp and Childress, 103. [6] Beauchamp and Childress, p. 108. [7] For other accounts that prioritize autonomy, see e.g. Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge University Press, 1989), 38–39; R Gillon, “Ethics Needs Principles—Four Can Encompass the Rest—and Respect for Autonomy Should Be ‘First among Equals,’” Journal of Medical Ethics 29, no. 5 (October 2003): 307–12, https://doi.org/10.1136/jme.29.5.307. For examples of critiques of these accounts, see footnote 9. [8] P. R. Wolpe, “The Triumph of Autonomy in American Bioethics: A Sociological View,” in Bioethics and Society: Constructing the Ethical Enterprise, p. 43. [9] V. A. Entwistle et al., “Supporting Patient Autonomy: The Importance of Clinician-Patient Relationships,” Journal of General Internal Medicine 25, no. 7 (July 2010): 741–45; C. Foster, Choosing Life, Choosing Death: The Tyranny of Autonomy in Medical Ethics and Law, 1st ed. (Oxford ; Hart Publishing, 2009); O. O’Neill, Autonomy and Trust in Bioethics, The Gifford Lectures, University of Edinburgh 2001 (Cambridge, UK: Cambridge University Press, 2002). [10] P. Marshall and B. Koenig, “Accounting for Culture in a Globalized Bioethics,” The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics 32, no. 2 (2004): 252–66; R. Fan, “Self-Determination vs. Family-Determination: Two Incommensurable Principles of Autonomy,” Bioethics 11, no. 3–4 (1997): 309–22. [11] Arguments stressing the importance of beneficence, as ours does here, certainly approach paternalistic arguments. We set aside the complex issue of paternalism for purposes of this paper and simply note that the principle of beneficence as such does not say anything specifically about acting against the patient’s will. In the case study that focuses this paper, we do not believe the patient’s will or wishes were clearly indicated. [12] Beauchamp and Childress, Principles of Biomedical Ethics, p. 20, see note 2 above. [13] H. S. Richardson, “Specifying, Balancing, and Interpreting Bioethical Principles,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 25, no. 3 (January 1, 2000): 285–307, p. 287. [14] H. D. Braude, Intuition in Medicine a Philosophical Defense of Clinical Reasoning (Chicago ; University of Chicago Press, 2012). [15] R. Kukla, “Conscientious Autonomy: Displacing Decisions in Health Care,” The Hastings Center Report 35, no. 2 (2005): 34–44. [16] M. Schermer, The Different Faces of Autonomy: Patient Autonomy in Ethical Theory and Hospital Practice, vol. 13, Library of Ethics and Applied Philosophy (Dordrecht: Springer Netherlands, 2002). [17] E. D. Pellegrino and D. C. Thomasma, For the Patient’s Good - the Restoration of Beneficence in Health Care (New York, NY: Oxford University Press, 1988), p. 29. [18] Pellegrino and Thomasma, For the Patient’s Good. 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BackgroundPatient autonomy is a fundamental, yet challenging, principle of professional medical ethics. The idea that individual patients should have the freedom to make choices about their lives, including medical matters, has become increasingly prominent in current literature. However, this has not always been the case, especially in communist countries where paternalistic attitudes have been interwoven into all relationships including medical ones. Patients’ expectations and the role of the doctor in the patient-physician relationship are changing. Croatia, as a transitional country, (...) is currently undergoing this particular process.MethodsQualitative research was conducted by means of six focus group discussions held in the years 2012 and 2013 in Croatia. Focus groups were held separately with each of the following: first year and final year medical students, physicians engaged in medical ethics education, physicians practicing in a clinical hospital, family medicine residents and individuals representing patients with chronic disease. This research specifically addresses issues related to patient autonomy, in particular, the principles of truth telling, confidentiality, and informed consent. All focus group discussions were audio taped and then transcribed verbatim and systematized according to acknowledged qualitative analysis methods.Results and discussionPatient autonomy is much more than a simple notion defined as the patient’s right to make treatment decisions independently. It has to be understood in context of the broader socio-cultural setting. At present, both patients and medical doctors in Croatia are increasingly appreciating the importance of promoting the principle of autonomy in medical decision-making. However, the current views of medical students, physicians and patients reveal inconsistencies.Conclusions Knowing how to respect the various facets of patients’ autonomy should be part of physician’s professional duties, and also be reflected in his or her core clinical competencies. For this reason greater importance should be dedicated to patient autonomy issues in medical education in Croatia. (shrink)

Legal standards of disclosure in a variety of jurisdictions require physicians to inform patients about the likely consequences of treatment, as a condition for obtaining the patient’s consent. Such a duty to inform is special insofar as extensive disclosure of risks and potential benefits is not usually a condition for obtaining consent in non-medical transactions. -/- What could morally justify the physician’s special legal duty to inform? I argue that existing justifications have tried but failed to ground such special duties (...) directly in basic and general rights, such as autonomy rights. As an alternative to such direct justifications, I develop an indirect justification of physicians’ special duties from an argument in Kant’s political philosophy. Kant argues that pre- legal rights to freedom are the source of a duty to form a state. The state has the authority to conclusively determine what counts as “consent” in various kinds of transactions. The Kantian account can subsequently indirectly justify at least one legal standard imposing a duty to inform, the reasonable person standard, but rules out one interpretation of a competitor, the subjective standard. (shrink)

Philosophers and physicians alike tend to discuss the physician-patient relationship in terms of physician privilege and patient autonomy, stressing the duty of the physician to respect the autonomy and the variously elaborated rights of the patient. The authors of this article argue that such emphasis on rights was initially productive, in a first generation of debate on medical ethical issues, but that it is now time for a second generation effort that will stress the importance of the (...) unique experiential aspects of the physician-patient relationship — mutual trust, suffering and healing. We attempt here to initiate this second-generation discussion, presenting the first generation's philosophical background, criticizing it from the perspective of clinical experience, and seeking a synthesis in the relational qualities of patient and physician interacting in a medical context. (shrink)

Patient autonomy, as exercised in the informed consent process, is a central concern in bioethics. The typical bioethicist's analysis of autonomy centers on decisional capacity—finding the line between autonomy and its absence. This approach leaves unexplored the structure of reasoning behind patient treatment decisions. To counter that approach, we present a microeconomic theory of patient decision-making regarding the acceptable level of medical treatment from the patient's perspective. We show that a rational patient's desired treatment level (...) typically departs from the level yielding an absence of symptoms, the level we call ideal. This microeconomic theory demonstrates why patients have good reason not to pursue treatment to the point of absence of physical symptoms. We defend our view against possible objections that it is unrealistic and that it fails to adequately consider harm a patient may suffer by curtailing treatment. Our analysis is fruitful in various ways. It shows why decisions often considered unreasonable might be fully reasonable. It offers a theoretical account of how physician misinformation may adversely affect a patient's decision. It shows how billing costs influence patient decision-making. It indicates that health care professionals' beliefs about the ‘unreasonable’ attitudes of patients might often be wrong. It provides a better understanding of patient rationality that should help to ensure fuller information as well as increased respect for patient decision-making. (shrink)

The euthanasia literature typically discusses the difference between “active” and “passive” means of ending a patient’s life. Physician-assisted suicide differs from both active and passive forms of euthanasia insofar as the physician does not administer the means of suicide to the patient. Instead, she merely prescribes and dispenses them to the patient and lets the patient “do the rest” – if and when the patient chooses. One supposed advantage of this process is that it maximizes the patient’s autonomy with (...) respect to both her decision to die and the dying process itself. Still, despite this supposed advantage, Oregon is the only state to have legalized physician-assisted suicide. After summarizing the most important Supreme Court opinions on euthanasia (namely, Cruzan v. Director, Missouri Dep’t of Health; Vacco v. Quill; Washington v. Glucksberg; and Gonzales v. Oregon), this paper argues that while there are no strong ethical reasons against legalizing physician-assisted suicide, there are some very strong policy reasons for keeping it criminal in the other forty-nine states. (shrink)

National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both (...) countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture. (shrink)

It is a remarkable fact about the development of medical ethics from the 1960s until today that there has been a dramatic shift from a position where it was taken for granted that the physician knows best, to a position where much greater emphasis is put on the patient’s treatment preferences. This shift is evident with regard to physician attitudes towards disclosing a cancer diagnosis. For example, in 1961, a survey of cancer physicians showed that almost 90% of the physicians (...) reported that their usual policy was not to tell their patients that they had cancer . The survey was repeated in 1979, and it showed a complete reversal in attitudes over this 20-year period. 90% reported that their usual policy was to tell their patients that they had cancer .One common way of justifying the new approach is to claim that patients have a right to make their own treatment decisions, referring to the basic value of patient autonomy. However, it is immediately obvious that physicians should not respect all choices made by patients. Consider the following case: A thirty-eight-year-old man with mild upper respiratory infection suddenly developed severe headache, stiff neck, and high fever. He went to an emergency room for help. The diagnosis was pneumococcal meningitis, a bacterial meningitis almost always fatal if not treated. If treatment is delayed, permanent neurological damage is likely. A physician told the patient that urgent treatment was needed to save his life and forestall brain damage. The patient refused to consent to treatment saying he wanted to be allowed to die .Very few, if any, physicians would respect this person’s treatment choice. The reason is that this patient is not competent to make his own decisions. Respect for autonomy only requires that the choices of patients who are competent to make their own decisions are honoured. Judgements about which patients are competent to make their own decisions therefore become crucial. (shrink)

In this article I offer a defence of the use of deceptive placebos—inert treatments like sugar pills or saline injections—in clinical practice. In particular, I will defend what I call the ideal placebo case—where a doctor or nurse has good reason to believe that a deceptive placebo offers a patient’s best, or only, chance of some therapeutic benefit. Taking a Kantian approach to the question of clinical placebo use, I examine the Kantian prohibition on deception as interference with (...) the will of a rational agent, and argue that deception to promote the placebo effect can be carried out in a way that does not interfere with the patient’s will in the way prohibited by Kant. The deception involved in a placebo treatment is not carried out to interfere with or obstruct the function of the will, but merely to make possible a means to the patient’s ends that that would otherwise be unavailable. I will therefore argue that deception carried out in order to promote a therapeutic placebo effect can be done in a way that is consistent with respect for a patient’s autonomy, and may be a rare case of deception that is compatible with a Kantian ethical approach. (shrink)

In this paper, I address some of the shortcomings of established clinical ethics centring on personal autonomy and consent and what I label the Doctrine of Respecting Personal Autonomy in Healthcare. I discuss two implications of this doctrine: 1) the practice for treating patients who are considered to have borderline decision-making competence and 2) the practice of surrogate decision-making in general. I argue that none of these practices are currently aligned with respectful treatment of vulnerable individuals. Because of (...) ‘structural arbitrariness’ in the whole process of how we assess decision-making competence, this area is open to disrespectful treatment of people. The practice of surrogate decision- making on the basis of a single person's judgment is arguably not consistent with ethical and political requirements derived from the doctrine itself. In response to the inadequacies of the doctrine, I suggest a framework for reasonableness in surrogate decision-making which might allow practice to avoid the problems above. I conclude by suggesting an extended concept of Patient Autonomy which integrates both personal autonomy and the regulative idea of morality that is required by reasonableness in deciding for non-competent others. (shrink)

In this companion volume to their 1981 work, A Philosophical Basis of Medical Practice, Pellegrino and Thomasma examine the principle of beneficence and its role in the practice of medicine. Their analysis, which is grounded in a thorough-going philosophy of medicine, addresses a wide array of practical and ethical concerns that are a part of health care decision-making today. Among these issues are the withdrawing and withholding of nutrition and hydration, competency assessment, the requirements for valid surrogate decision-making, quality-of-life determinations, (...) the allocation of scarce health care resources, medical gatekeeping, and for-profit medicine. The authors argue for the restoration of beneficence to its place as the fundamental principle of medical ethics. They maintain that to be guided by beneficence a physician must perform a right and good healing action which is consonant with the individual patient 's values. In order to act in the patient 's best interests, or the patient 's good, the physician and patient must discern what that good is. This knowledge is gained only through a process of dialogue between patient and/or family and physician which respects and honors the patient 's autonomous self-understanding and choice in the matter of treatment options. This emphasis on a dialogical discernment of the patient 's good rejects the assumption long held in medicine that what is considered to be the medical good is necessarily the good for this patient. In viewing autonomy as a necessary condition of beneficence, the authors move beyond a trend in the medical ethics literature which identifies beneficence with paternalism. In their analysis of beneficence, the authors reject the current emphasis on rights- and duty-based ethical systems in favor of a virtue-based theory which is grounded in the physician- patient relationship. This book's provocative contributions to medical ethics will be of great interest not only to physicians and other health professionals, but also to ethicists, students, patients, families, and all others concerned with the relationship of professional to patient and patient to professional in health care today. (shrink)

That Jehovah’s Witnesses may refuse lifesaving blood transfusions is a morally accepted feature of contemporary medical practice. The principle of respect for autonomy supports this, and there is seldom reason to interfere with this choice because it rarely harms another individual. Advances in surgical technique have made it possible for transplant surgeons to perform bloodless organ transplant, enabling Jehovah’s Witnesses to benefit from this treatment. When the transplant organ is a directed donation from a family member or friend, (...) no ethical dilemma arises. However, when a Jehovah’s Witness cannot identify a living donor and wishes to be listed for organ transplant, the transplant team may face an ethical dilemma. On the one hand, it wishes to provide care to the patient that is compatible with her or his preferences. On the other hand, the team may wonder if it is fair to other patients who need an organ and will accept blood transfusion to include the Jehovah’s Witness patient on a waiting list for a donated organ. If the Jehovah’s Witness patient is listed and receives an organ, then a patient who also needs an organ, and who is willing to accept all care to optimize the success of the transplant, may be denied an organ.To frame the ethical dilemma outlined above we present an anonymized case of a Jehovah’s Witness woman in urgent need of a kidney, who was referred to one of the authors’ institution’s transplant center. We review the evolution of the Jehovah’s Witness position on blood transfusion and the medical community’s efforts to provide care that accommodates this religious commitment. If Witnesses are to be denied transplant in the name of justice, there must be an ethically sound reason. We identify two rationales in the literature: (1) this allocation is unacceptable because it will cost lives; (2) resources should be allocated to patients who comply with the standard of care. We argue that neither apply to this dilemma. We also emphasize the importance of examining the data on outcomes of transplant with and without transfusion. Our interpretation of the published data on transplant without transfusion is that the outcomes are similar. We conclude that, in the absence of data that resources are risked, it is not ethical to refuse to include a Jehovah’s Witness patient on a waiting list for an organ. Finally, we reflect on the heterogeneity in transplant institutes’ polices for accepting Jehovah’s Witness patients. (shrink)

ABSTRACT In this paper, I address some of the shortcomings of established clinical ethics centring on personal autonomy and consent and what I label the Doctrine of Respecting Personal Autonomy in Healthcare. I discuss two implications of this doctrine: 1) the practice for treating patients who are considered to have borderline decision‐making competence and 2) the practice of surrogate decision‐making in general. I argue that none of these practices are currently aligned with respectful treatment of vulnerable individuals. Because (...) of ‘structural arbitrariness’ in the whole process of how we assess decision‐making competence, this area is open to disrespectful treatment of people. The practice of surrogate decision‐ making on the basis of a single person's judgment is arguably not consistent with ethical and political requirements derived from the doctrine itself. In response to the inadequacies of the doctrine, I suggest a framework for reasonableness in surrogate decision‐making which might allow practice to avoid the problems above. I conclude by suggesting an extended concept of Patient Autonomy which integrates both personal autonomy and the regulative idea of morality that is required by reasonableness in deciding for non‐competent others. (shrink)

Objectives: To investigate the extent to which family physicians in Lithuania inform their patients about possible side-effects when a common treatment is proposed. To examine the relation between physicians’ estimation of the severity and frequency of these side-effects and their willingness to inform patients. To identify the reasons for informing or not informing the patients.Methods: A questionnaire, presenting three hypothetical cases involving decisions about ordinary medical treatments and a series of general questions about information about side-effects, was distributed to 500 (...) Lithuanian GPs. The response rate was 42%.Results: The respondents differed considerably with regard to their willingness to inform patients about side-effects, but they informed their patients significantly more if the side effect was considered to be common and serious, than in cases when it was considered to be rare and trivial. The majority of the respondents informed their patients primarily to enable them to react appropriately to the side-effects in question. The major reason for not informing was that the side-effects were considered too rare to be relevant to the patient’s decision-making.Conclusion: Information, given to patients about side-effects by Lithuanian GPs, is not in accordance with the principle of respect for patients’ autonomy and requirements of Lithuanian legislation. (shrink)

Microethics is about the ethics of everyday clinical practice. The subtle nuances in communication between doctor and patient (the doctor’s choice of words, tone, body language, gestures, etc.) can influence the exercise of the patient’s autonomy. The four models of the doctor- patient/physician-patient relationship (paternalistic, informative, interpretive, deliberative) weigh respect for autonomy and beneficence in varying proportions. Each model may be appropriate in certain circumstances. This article considers these models from the perspective of microethics and the unique (...) dimensions created by the doctor-child-parent relationship. In particular, the article considers the nuances to the autonomy principle created by the child’s developing maturity and the parent’s role as a co-fiduciary of the child’s interests. Ultimately, the deliberative model seems most appropriate to the paediatric setting, since it accommodates the child’s developing maturity in making healthcare-related decisions. This model infuses care into the doctor’s communication with the child and parent. (shrink)

Recent articles in biomedical ethics have begun to explore both the relevance of family interests in treatment decisions and the resultant ramifications for physicians' obligations to patients. This article addresses two important questions regarding physicians' obligations vis-a-vis family interests: (1) What should a physician do when the exercise of patient autonomy threatens to negate the patient's moral obligations to other family members? (2) Does respect for patient autonomy typically require efforts on the part of physicians to (...) keep patients' treatment decisions from being influenced by family considerations? A series of clarifications about the concept of autonomy is also presented. (shrink)

BackgroundDespite consensus about the importance of implementing shared decision-making (SDM) in clinical practice, this ideal is inconsistently enacted today. Evidence shows that SDM practices differ in the degree of involvement of patients or family members, or in the amount of medical information disclosed to patients in order to “share” meaningfully in treatment decisions. Little is known on which representations and moral justifications physicians hold when realizing SDM. This study explored physicians’ experiences of SDM in the management of paediatric patients with (...) prolonged disorders of consciousness (PDOC). Specifically, we focused on physicians’ SDM approaches, representations, and ethical justifications for engaging in SDM.MethodsWe used a qualitative approach to explore the SDM experiences of 13 ICU physicians, paediatricians, and neurologists based in Switzerland who have been or were involved in the care of paediatric patients living with PDOC. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data were analysed through thematic analysis.ResultsWe found that participants followed three main decision-making approaches: the “brakes” approach, characterized by maximized family’s decisional freedom, though conditional to physician’s judgment regarding the medical appropriateness of a treatment; the “orchestra director” approach, characterized by a multi-step decision-making process led by the main physician aimed at eliciting the voices of the care team members and of the family; and the “sunbeams” approach, characterized by a process oriented to reach consensus with family members through dialogue, where the virtues of the physician are key to guide the process. We also found that participants differed in the moral justifications sustaining each approach, citing the duty to respect parental autonomy, to invest in an ethics of care, and to employ physicians’ virtues to guide the decision-making process.ConclusionOur results show that physicians come to perform SDM in different ways, with several representations, and distinct ethical justifications. SDM training among health care providers should clarify the ductility of SDM and the several ethical motivations underpinning it, rather than insisting on the principle of respect for patient’s autonomy as its only moral foundation. (shrink)

Contrary to the widespread concern about over-treatment at the end of life, today, patient preferences for palliative care at the end of life are frequently respected. However, ethically challenging situations in the current healthcare climate are, instead, situations in which a competent patient requests active treatment with the goal of life-prolongation while the physician suggests best supportive care only. The argument of futility has often been used to justify unilateral decisions made by physicians to withhold or withdraw life-sustaining treatment. However, (...) we argue that neither the concept of futility nor that of patient autonomy alone is apt for resolving situations in which physicians are confronted with patients' requests for active treatment. Instead, we integrate the relevant arguments that have been put forward in the academic discussion about ‘futile’ treatment into an ethical algorithm with five guiding questions: (1) Is there a chance that medical intervention will be effective in achieving the patient's treatment goal? (2) How does the physician evaluate the expected benefit and the potential harm of the treatment? (3) Does the patient understand his or her medical situation? (4) Does the patient prefer receiving treatment after evaluating the benefit-harm ratio and the costs? (5) Does the treatment require many resources? This algorithm shall facilitate approaching patients' requests for treatments deemed futile by the physician in a systematic way, and responding to these requests in an ethically appropriate manner. It thereby adds substantive considerations to the current procedural approaches of conflict resolution in order to improve decision making among physicians, patients and families. (shrink)

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical (...) setting remain understudied. However, the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (shrink)

Background On December 2017 the Italian Parliament approved law n. 219/2017 “Provisions for informed consent and advance directives” regarding challenging legal and bioethical issues related to healthcare decisions and end-of life choices. The law promotes the person’s autonomy as a right and provides for the centrality of the individual in every scenario of health care by mean of three tools: informed consent, shared care planning and advance directives. Few years after the approval of the law, we conducted a survey (...) among physicians working in four health care facilities specific for the care of people suffering from psychiatric disorders, cognitive disorders and dementia located in the North of Italy aiming to investigate their perceived knowledge and training need, attitudes regarding law n. 219/2017 provisions, and practices of implementation of the law. Methods A semi-structured questionnaire was developed on an online platform. The invitation to participate in the survey was sent by email to the potential participants. Information was collected by means of the online platform (Google Forms) which allows to export data in a spreadsheet (Windows Excel) to perform basic statistical analysis (frequency distributions, bar chart representation). Results Twenty-five out of sixty physicians participated in the survey. None of the respondents value their knowledge of the law as very good, 10 good, 13 neither poor nor good, 1 poor and 1 very poor. All the respondents want to learn more about the law (21 yes and 4 absolutely yes). The majority of respondents agrees with the content of the law as a whole (3 absolutely agree, 13 agree), and on each provision. The question on the clarity of the concept of capacity in the law received mixed answers and this impacted on the physicians’ opinion regarding the legitimacy in principle for our groups of patients to realize shared care planning and write advance directives. Thirteen physicians neither introduced the theme of shared care planning nor arranged for shared care planning and the main reason for this was that no patient was in a clinical situation to require it. When shared care planning is realized, a variability in terms of type and number of meetings, mode of tracking and communication is registered. Conclusions Our survey results indicate a need for more clarity regarding the interpretation and implementation of the law in the patient groups under study. There are in particular two related areas that deserve further discussion: (1) the question of whether these patient groups are in principle legitimized by the law to realize shared care planning or write advance directives; (2) the notion of capacity required by the law and how this notion can be declined in real-life situations. (shrink)

In the article “Nudging and Informed Consent”, Cohen argues that the use of “nudging” by physicians in the clinical encounter may be ethically warranted because it results in an informed consent where obligations for beneficence and respect for autonomy are both met. However, the author's overenthusiastic support for nudging and his quick dismissal of shared decision-making leads him to assume that “soft” manipulation is un-problematic and that “wisdom” on the side of medical professionals will suffice to guard against (...) abuse. Opposing this view, we propose that: 1) patient preferences and values should not be boiled down to rational or irrational decisions based on cognitive reasoning alone, 2) potential threats to the physician-patient must be mitigated and could be minimized by employing alternative strategies that acknowledge the impact of cognitive heuristics in shaping decision-making but maintain transparency and trust, and 3) patient preferences and values can be legitimately influenced only under specific circumstances. The latter include: (1) exhaustion of other means; (2) evidence that nudging is effective in a specific context; (3) evidence of clear and active public misinformation (e.g., industry promoting smoking); (4) explicit pubic dialogue between various stakeholders including medical professional societies about nudging; (5) upholding shared decision-making as a preferred approach; and (6) a rich understanding of clinical reality beyond the simple dichotomy of beneficence-autonomy. (shrink)

Background Decisions regarding Cardio-Pulmonary Resuscitation (CPR) and Do Not Attempt Resuscitation (DNAR) orders remain demanding, as does including patients in the process. Objectives To explore physicians’ justification for CPR/DNAR orders and decisions regarding patient inclusion, as well as their reports of how they initiated discussions with patients. Methods We administered a face-to-face survey to residents in charge of 206 patients including DNAR and CPR orders, with or without patient inclusion. Results Justifications were provided for 59% of DNAR orders and included (...) severe comorbidity, patients and families’ resuscitation preferences, patients’ age, or poor prognosis or quality of life. Reasons to include patients in CPR/DNAR decisions were provided in 96% and 84% of cases, and were based on respect for autonomy, clinical assessment of the situation as not too severe, and the view that such inclusion was required. Reasons for not including patients were offered in 84% of cases for CPR and in 70% for DNAR. They included absent decision-making capacity, a clinical situation viewed as good (CPR) or offering little hope of recovery (DNAR), barriers to communication, or concern that discussions could be emotionally difficult or superfluous. Decisions made earlier in the patient's management were infrequently viewed as requiring revision. Residents reported a variety of introductions to discussions with patients. Conclusions These results provide better understanding of reasons for CPR/DNAR decisions, reasons for patient inclusion or lack thereof, and ways in which such inclusion is initiated. They also point to potential side-effects of implementing CPR/DNAR recommendations without in-depth and practical training. This should be part of a regular audit and follow-up process for such recommendations. (shrink)

The patient’s autonomy and well-being are sometimes seen as central to the ethical justification of voluntary euthanasia (VE) and physician-assisted suicide (PAS). While respecting the patient’s wish to die plausibly promotes the patient’s autonomy, it is less obvious how alleviating the patient’s suffering through death benefits the patient. Death eliminates the subject, so how can we intelligibly maintain that the patient’s well-being is promoted when she/he no longer exists? This article interrogates two typical answers given by philosophers: (a) (...) that death confers a well-being benefit in the sense that it actualises a comparatively better life course for the patient (ie, a shorter life with less net suffering), and (b) that death is beneficial because non-existence which entails no suffering is superior to an existence filled with suffering. A close examination of the two senses in which the patient might incur a well-being benefit reveals problems that preclude physicians delivering VE/PAS in the name of beneficence. (shrink)

Covid‐19 heralded a natural experiment with telemedicine. My experience as a clinician was very positive, and learning how to use telemedicine has made me a better doctor. Telemedicine has flipped the medical service paradigm; families do not need to conform their busy lives to the medical office workflow. An appointment can be a virtual house call that takes less time for my patient's family and allows me to learn even more about their home. While there are limitations of telemedicine, (...) there are good ethical reasons for clinicians to support the broader use of telehealth, including equity, efficiency, effectiveness, and respecting preferences. Empirical health‐services research that assesses satisfaction, quality, and health outcomes will be necessary to determine the impact of telehealth on a population level to ensure that is used in a way that promotes equity in care. (shrink)

When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that even if such (...) a PPP were more accurate, on average, than human surrogates in identifying patient preferences, the proposed algorithm would nevertheless fail to respect the patient’s (former) autonomy since it draws on the ‘wrong’ kind of data: namely, data that are not specific to the individual patient and which therefore may not reflect their actual values, or their reasons for having the preferences they do. Taking such criticisms on board, we here propose a new approach: the Personalized Patient Preference Predictor (P4). The P4 is based on recent advances in machine learning, which allow technologies including large language models to be more cheaply and efficiently ‘fine-tuned’ on person-specific data. The P4, unlike the PPP, would be able to infer an individual patient’s preferences from material (e.g., prior treatment decisions) that is in fact specific to them. Thus, we argue, in addition to being potentially more accurate at the individual level than the previously proposed PPP, the predictions of a P4 would also more directly reflect each patient’s own reasons and values. In this article, we review recent discoveries in artificial intelligence research that suggest a P4 is technically feasible, and argue that, if it is developed and appropriately deployed, it should assuage some of the main autonomy-based concerns of critics of the original PPP. We then consider various objections to our proposal and offer some tentative replies. (shrink)

In the practice of medicine there has long been a conflict between patient management and respect for patient autonomy. In recent years this conflict has taken on a new form as patient management has increasingly been shifted from physicians to insurers, employers, and health care bureaucracies. The consequence has been a diminshment of both physician and patient autonomy and a parallel diminishment of medical record confidentiality. Although the new managers pay lip service to the rights of patients (...) to confidentiality of their records, in fact they advocate very liberal medical records access policies. They argue that a wide range of parties has a need to know the contents of individually identifiable medical records in order to control costs, promote quality of care, and undertake research in the public interest. Broad interpretations of the need to know, however, are at odds with strict interpretations of the right to confidentiality. Strict confidentiality policies require that, with few exceptions, patient consent be obtained whenever a patient's record is used outside the treatment context. The traditional criterion for overriding the consent requirement has been that without the override some harm would directly result. This rule is now challenged by the claim that patients have a duty to make their records available for a wide range of research and public health purposes. The longstanding tension between physician responsibility for patient welfare and respect for patient autonomy is being replaced by a debatable requirement that both physician and patient autonomy be subordinated to the goals of data collection and analysis. (shrink)

In Moral Case Deliberation, healthcare professionals discuss ethically difficult patient situations in their daily practice. There is a lack of knowledge regarding the content of MCD and there is a need to shed light on this ethical reflection in the midst of clinical practice. Thus, the aim of the study was to describe the content of healthcare professionals’ moral reasoning during MCD. The design was qualitative and descriptive, and data consisted of 22 audio-recorded inter-professional MCDs, analysed with content analysis. The (...) moral reasoning centred on how to strike the balance between personal convictions about what constitutes good care, and the perceived dissonant care preferences held by the patient. The healthcare professionals deliberated about good care in relation to demands considered to be unrealistic, justifications for influencing the patient, the incapacitated patient’s nebulous interests, and coping with the conflict between using coercion to achieve good while protecting human dignity. Furthermore, as a basis for the reasoning, the healthcare professionals reflected on how to establish a responsible relationship with the vulnerable person. This comprised acknowledging the patient as a susceptible human being, protecting dignity and integrity, defining their own moral responsibility, and having patience to give the patient and family time to come to terms with illness and declining health. The profound struggle to respect the patient’s autonomy in clinical practice can be understood through the concept of relational autonomy, to try to secure both patients’ influence and at the same time take responsibility for their needs as vulnerable humans. (shrink)

The medical profession is observing a rising number of calls to action considering the threat that climate change poses to global human health. Theory-led bioethical analyses of the scope and weight of physicians’ normative duty towards climate protection and its conflict with individual patient care are currently scarce. This article offers an analysis of the normative issues at stake by using Korsgaard’s neo-Kantian moral account of practical identities. We begin by showing the case of physicians’ duty to climate protection, (...) before we succinctly introduce Korsgaard’s account. We subsequently show how the duty to climate protection can follow from physicians’ identity of being a healthcare professional. We structure conflicts between individual patient care and climate protection, and show how a transformation in physicians’ professional ethos is possible and what mechanisms could be used for doing so. An important limit of our analysis is that we mainly address the level of individual physicians and their practical identities, leaving out important measures to respond to climate change at the mesolevels and macrolevels of healthcare institutions and systems, respectively. (shrink)

Personal autonomy presupposes the notion of rationality. What is not so clear is whether, and how, a compromise of rationality to various degrees will diminish a person's autonomy. In bioethical literature, three major types of threat to the rationality of a patient's medical decision are identified: insufficient information, irrational beliefs/desires, and influence of different framing effects. To overcome the first problem, it is suggested that patients be provided with information about their diseases and treatment choices according to (...) the objective standard. I shall explain how this should be finessed. Regarding the negative impact of irrational beliefs/desires, some philosophers have argued that holding irrational beliefs can still be an expression of autonomy. I reject this argument because the degree of autonomy of a decision depends on the degree of rationality of the beliefs or desires on which the decision is based. Hence, to promote patient autonomy, we need to eliminate irrational beliefs by the provision of evidence and good arguments. Finally, I argue that the way to smooth out the framing effects is to present the same information in different perspectives: it is too often assumed that medical information can always be given in a complete and unadorned manner. This article concludes with a cautionary note that the protection of patient autonomy requires much more time and effort than the current practice usually allows. (shrink)

When a patient lacks sufficient capacity to make a certain treatment decision, whether because of deficits in their ability to make a judgement that reflects their values or to make a decision that reflects their judgement or both, the decision must be made by a surrogate. Often the best way to respect the patient’s autonomy, in such cases, is for the surrogate to make a ‘substituted’ judgement on behalf of the patient, which is the decision that best reflects (...) the patient’s values and identity-infused beliefs as they were when the patient last possessed capacity. It is by now well-known that there is troubling evidence that surrogates do only slightly better than chance at making accurate substituted judgements. The use of a patient preference predictor, an algorithm that predicts patient preferences based on characteristics like the patient’s age, gender, socioeconomic status and education level, could help. Rid and Wendler have done important work making a moral case for using the PPP.1 If it were shown to enhance accuracy, it is not at all obvious what objections there could be to its use. Yet several subtle criticisms of the PPP have emerged in the literature. In their feature article, Jardas, Wasserman and Wendler select six of the most prominent objections to the PPP in the literature and defend the PPP against them.2 Along the way they make significant contributions to broader issues concerning the proper uses of statistical evidence and limits on the kinds of preferences there can be reasons of autonomy to respect. Since I found the authors’ answers to the final two objections—that the PPP relies on naked statistical evidence and that it uses non-endorsed reasons—to be especially interesting and provocative, I will examine those answers and raise a few questions about …. (shrink)

Rawls offers three arguments for the priority of liberty in Theory, two of which share a common error: the belief that once we have shown the instrumental value of the basic liberties for some essential purpose (e.g., securing self-respect), we have automatically shown the reason for their lexical priority. The third argument, however, does not share this error and can be reconstructed along Kantian lines: beginning with the Kantian conception of autonomy endorsed by Rawls in section (...) 40 of Theory, we can explain our highest-order interest in rationality, justify the lexical priority of all basic liberties, and reinterpret Rawls’ threshold condition for the application of the priority of liberty. Perhaps unsurprisingly, this Kantian reconstruction will not work within the radically different framework of Political Liberalism. (shrink)

There is widespread agreement that it would be both morally and legally wrong to treat a competent patient, or to carry out research with a competent participant, without the voluntary consent of that patient or research participant. Furthermore, in medical ethics it is generally taken that that consent must be informed. The most widely given reason for this has been that informed consent is needed to respect the patient’s or research participant’s autonomy. In this article I set out (...) to challenge this claim by considering in detail each of the three most prominent ways in which ‘autonomy’ has been conceptualized in the medical ethics literature. I will argue that whilst these accounts support the claim that consent is needed if the treatment of competent patients, or research on competent individuals, is to respect their autonomy, they do not support the claim that informed consent is needed for this purpose. (shrink)

Medicine’s fundamental moral philosophy is the responsibility of caring for the ill, yet beneficence is not under the province of the law.Indeed, fiduciary responsibilities of doctors are limited. Instead, American law is preoccupied with protecting patient rights under the precept of patient autonomy, and contemporary medical ethics is dominated by these concerns. The extrapolation of autonomy rights from the political and judicial culture to medicine is, under ordinary circumstance, non-problematic. However, in instances of conflict, the dominance of (...) class='Hi'>autonomy reveals a hierarchy of values determining patient care. To illustrate the moral calculus of balancing competing principles, the ethical issues of involuntary treatment of psychotic patients are considered, and alternatives to the moral reasoning currently guiding the care of these individuals are offered to better solve the dilemma of respecting patient autonomy while still fulfilling the claims of physician responsibility. (shrink)

Background Regarding controversial medical services, many have argued that if physicians cannot in good conscience provide a legal medical intervention for which a patient is a candidate, they should refer the requesting patient to an accommodating provider. This study examines what US physicians think a doctor is obligated to do when the doctor thinks it would be immoral to provide a referral. Method The authors conducted a cross-sectional survey of a random sample of 2000 US physicians from all specialties. The (...) primary criterion variable was agreement that physicians have a professional obligation to refer patients for all legal medical services for which the patients are candidates, even if the physician believes that such a referral is immoral. Results Of 1895 eligible physicians, 1032 (55%) responded. 57% of physicians agreed that doctors must refer patients regardless of whether or not the doctor believes the referral itself is immoral. Holding this opinion was independently associated with being more theologically pluralistic, describing oneself as sociopolitically liberal, and indicating that respect for patient autonomy is the most important bioethical principle in one's practice (multivariable ORs, 1.6–2.4). Conclusions Physicians are divided about a professional obligation to refer when the physician believes that referral itself is immoral. These data suggest there is no uncontroversial way to resolve conflicts posed when patients request interventions that their physicians cannot in good conscience provide. (shrink)

Introduction Compulsory care is controversial, since respect for the patient’s autonomy is a standard requirement in health care. Many psychiatrists have experienced that patients with borderline personality syndrome sometimes demand compulsory care for themselves in order not to exert self-harm—like Ulysses contracts. The aim of this study was to examine the possible existence and extent of borderline personality syndrome-patient demands for Ulysses contracts regarding compulsory care in acute psychiatry, and how external influences and demands could affect the caregivers’ (...) decisions about compulsory care. Method An anonymous questionnaire, with three questions with fixed answers, was distributed to 42 licensed medical doctors on call at the psychiatric emergency unit in the city of Stockholm. Thirty-three questionnaires were answered, giving a response rate of 79%. Results Ninety-four percent of the respondents recognized the phenomenon of borderline personality syndrome patients requesting compulsory care, 21% stated that this request had affected their clinical decision, and 55% had used compulsory care for other reasons than the patient’s best interest. Discussion The results indicate that compulsory care is sometimes given in the form of Ulysses contracts for borderline personality syndrome patients. Also, compulsory care is sometimes used for other reasons than the borderline personality syndrome patient’s best interest. Psychological mechanisms affect the decisions of both patients and caregivers. More research should be done concerning to whom, why, and with what consequences compulsory care is prescribed. (shrink)

According to many of its proponents, shared decision making ("SDM") is the right way to interpret the clinician-patient relationship because it respects patient autonomy in decision-making contexts. In particular, medical ethicists have claimed that SDM respects a patient's relational autonomy understood as a capacity that depends upon, and can only be sustained by, interpersonal relationships as well as broader health care and social conditions. This paper challenges that claim. By considering two primary approaches to relational autonomy, (...) this paper argues that standard accounts of SDM actually undermine patient autonomy. It also provides an overview of the obligations generated by the principle of respect for relational autonomy that have not been captured in standard accounts of SDM and which are necessary to ensure consistency between clinical practice and respect for patient autonomy. (shrink)

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)

Background Respect is essential to providing high quality healthcare, particularly for groups that are historically marginalized and stigmatized. While ethical principles taught to health professionals focus on patient autonomy as the object of respect for persons, limited studies explore patients’ views of respect. The purpose of this study was to explore the perspectives of a multiculturally diverse group of low-income women living with HIV (WLH) regarding their experience of respect from their medical physicians. Methods We (...) analyzed 57 semi-structured interviews conducted at HIV case management sites in South Florida as part of a larger qualitative study that explored practices facilitating retention and adherence in care. Women were eligible to participate if they identified as African American (n = 28), Hispanic/Latina (n = 22), or Haitian (n = 7). They were asked to describe instances when they were treated with respect by their medical physicians. Interviews were conducted by a fluent research interviewer in either English, Spanish, or Haitian Creole, depending on participant’s language preference. Transcripts were translated, back-translated and reviewed in entirety for any statements or comments about “respect.” After independent coding by 3 investigators, we used a consensual thematic analysis approach to determine themes. Results Results from this study grouped into two overarching classifications: respect manifested in physicians’ orientation towards the patient (i.e., interpersonal behaviors in interactions) and respect in medical professionalism (i.e., clinic procedures and practices). Four main themes emerged regarding respect in provider’s orientation towards the patient: being treated as a person, treated as an equal, treated without blame or prejudice, and treated with concern/emotional support. Two main themes emerged regarding respect as evidenced in medical professionalism: physician availability and considerations of privacy. Conclusions Findings suggest a more robust conception of what ‘respect for persons’ entails in medical ethics for a diverse group of low-income women living with HIV. Findings have implications for broadening areas of focus of future bioethics education, training, and research to include components of interpersonal relationship development, communication, and clinic procedures. We suggest these areas of training may increase respectful medical care experiences and potentially serve to influence persistent and known social and structural determinants of health through provider interactions and health care delivery. (shrink)

Oncologists frequently have to break bad news to patients. Although they are not normally the ones who tell patients that they have cancer, they are the ones who have to tell patients that treatment is not working, and they are almost always the ones who have to tell them that they are going to die and that nothing more can be done to cure them. Perhaps the most difficult cases are those where further treatment is almost certainly futile, but there (...) remains an extremely slim chance of yet more aggressive treatment having a near-miraculous effect. In such situations, it can be difficult for the oncologist to decide how to explain things to the patient, and how much to tell them. It can also be very difficult to achieve the correct balance between respecting the patient’s autonomy and not exposing them to harm. This paper examines an example of one such case and makes three suggestions. First, that respecting autonomy cannot be achieved by maximising information-sharing only to deny patients the chance to make decisions based on that information; second, that the simplistic application of the principles of nonmaleficence and respect for autonomy can lead to erroneous conclusions about the most ethical course of action; and third, that there is an extra reason, in addition to respecting patients’ autonomy, for attempting near-futile last-ditch interventions: when treating rare conditions, useful evidence can be generated that will benefit future patients. (shrink)

This case study examines the circumstance of a patient who has clearly articulated non-treatment preferences and who then later becomes incapacitated. The patient's wife as well as a consulting physician both expressed a preference for full treatment at the time of this incapacity. The analysis of this circumstance is pertinent given misinformed beliefs by health care providers that once a patient is incapacitated, the family is free to override prior values and preferences. The analysis discusses the autonomy, beneficence, (...) and virtue-based considerations as to why a formerly capacitated patient who has not recanted his non-treatment preferences should be obeyed. (shrink)