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)

The development of predictive brain implant (PBI) technology that is able to forecast specific neuronal events and advise and/or automatically administer appropriate therapy for diseases of the brain raises a number of ethical issues. Provided that this technology satisfies basic safety and functionality conditions, one of the most pressing questions to address is its relation to the autonomy of patients. As Frederic Gilbert in his article asks, if autonomy implies a certain idea of freedom, or self-government, how can (...) an individual be considered to decide freely if the implanted device stands at the inception of the causal chain producing his decisions? He claims that PBIs threaten persons’ autonomy by diminishing their post-operative experience of self-control. In this commentary, I wish to discuss this claim. Contrary to Gilbert, I will suggest that PBIs do not pose a significant threat to patient’s autonomy, as self-control, but rather to his/her sense of authenticity. My claim is that the language of authenticity, already introduced in the recent bioethical literature, may offer a better way to voice some of the concerns with PBIs that Gilbert recognized. (shrink)

“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy (...) in this paper is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law. (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 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)

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)

Attitudes towards euthanasia and death-with-dignity of people who participated in the seminar on "life" were studied with questionnaires before and after a lecture regarding these issues. The results indicated that the number of the participants who accepted patient's autonomy increased after the lecture. However, the respondents who accepted the idea of patient's autonomy were less likely to accept euthanasia in general or wish for it in their own case. These data suggest that in this Japanese group, (...) the acceptance of euthanasia may stem from a form of mercy-killing as part of cultural and historical background, not from the autonomy principle. (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)

Questions of patient autonomy have formed an important part of ethical debate in medicine from at least the post-war period onwards. Although initially important as a counterweight to widespread medical paternalism, recent years have seen a reaction against a widely perceived ‘triumph of autonomy’. In particular, competent patients' refusal of life-saving or clearly beneficial treatment presents complex dilemmas for both healthcare professionals and ethicists. Discussion of the mechanism provided by the Israel Patient's Rights Act of 1996 for (...) ethics committees to override refusal of treatment by such patients has provided several examples in which it seems an obligation to benefit the patient can outweigh concerns regarding respect for their autonomy. However, such analyses as have been undertaken so far may be seen to omit important elements of the moral decision-making process that takes place even when the latter appears to ‘win out’. In addition to helping better prepare clinicians to meet such challenges in the future, a fuller appreciation of those elements that are present in justified cases of coercive treatment may enable them to arrive at a better understanding of what autonomy itself can mean in a medical context. (shrink)

The Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization plunged the United States into a devastating public health crisis. While we have some evidence of the deep harms that ab...

The fiduciary nature of the patient-physician relationship requires clinicians to act in the best interest of their patients. Patients are vulnerable due to their health status and lack of medical knowledge, which makes them dependent on the clinicians’ expertise. Competent patients, however, may reject the recommendations of their physician, either refusing beneficial medical interventions or procedures based on their personal views that do not match the perceived medical indication. In some instances, the patients’ refusal may jeopardize their health or life (...) but also compromise the clinician’s moral responsibility to promote the patient’s best interests. In other words, health professionals have to deal with patients whose behavior and healthcare decisions seem counterproductive for their health, or even deteriorate it, because of lack of knowledge, bad habits or bias without being the patients’ free voluntary choice. The moral dilemma centers on issues surrounding the limits of the patient’s autonomy (rights) and the clinician’s role to promote the well-being of the patient (duties). In this paper we argue that (1) the use of manipulative strategies, albeit considered beneficent, defeats the purpose of patient education and therefore should be rejected; and (2) the appropriate strategy is to empower patients through patient education which enhances their autonomy and encourages them to become full healthcare partners as opposed to objects of clinical intervention or entities whose values or attitudes need to be shaped and changed through education. First, we provide a working definition of the concept of patient education and a brief historical overview of its origin. Second, we examine the nature of the patient-physician relationship in order to delineate its boundaries, essential for understanding the role of education in the clinical context. Third, we argue that patient education should promote self-rebiasing, enhance autonomy, and empower patients to determine their therapeutic goals. Finally, we develop a moral framework for patient education. (shrink)

In contemporary bioethics, the autonomy of the patient has assumed considerable importance. Progressing from a more limited notion of informed consent, shared decision making calls upon patients to voice the desires and preferences of their authentic self, engaging in choice among alternatives as a way to exercise deeply held values. One influential opinion in Jewish bioethics holds that Jewish law, in contradistinction to secular bioethics, limits the patient's exercise of autonomy only in those instances in which treatment (...) choices are sensitive to preferences. Here, we analyze a discussion in the Mishna, a foundational text of rabbinic Judaism, regarding patient autonomy in the setting of religiously mandated fasting, and commentaries in the Babylonian and Palestinian Talmuds, finding both a more expansive notion of such autonomy and a potential metaphysical grounding for it in the importance of patient self-knowledge. (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)

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, Heidegger, and (...) Merleau-Ponty in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)

All illness represents a state of diminished autonomy and therefore the doctor-patient relationship necessarily and justifiably involves a degree of medical paternalism argues the author, an American medical student. In a broad-ranging paper he discusses the concepts of autonomy and paternalism in the context of the doctor-patient relationship. Given the necessary diminution of autonomy which illness inflicts, a limited form of medical paternalism, aimed at restoring or maximising the patient's autonomy is entirely acceptable, and indeed (...) fundamental to the relationship he argues. However, the exercise of this paternalism should be flexible and related to the current 'level of autonomy' of the patient himself. An editorial in this issue comments briefly on this paper. (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)

Despite moves to enhance the autonomy of clients of health care services, the use of a variety of physical restraints on the freedom of movement of frail, elderly patients continues in nursing homes. This paper confronts the use of restraints on two grounds. First, it challenges the assumption that use of restraints is necessary to protect the welfare of frail, elderly patients by drawing on a range of data indicating the limited efficacy of restraints. Secondly, it argues that the (...) duty to respect individual autonomy extends to a duty to respect the autonomy of patients who are elderly, frail and living in nursing homes. (shrink)

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients responded.Main (...) outcome measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (shrink)

Rapid advancement of technologies continues to revolutionize healthcare foundations and outlook. Technological progress in medicine are not only continuing to improve quality of individual life but also generally improving quality of healthcare services. As a matter of fact, the most significant change in healthcare systems was the shift from standardized, patronizing and rigid physician–patient relationship to more patient-focused, personalized and participatory practice. With this shift came increased attention to the assurance of patient’s right to autonomy. Therefore, this article aims (...) to discuss principal problematic aspects of patient’s right to autonomy hereby the patient’s role in the context of technologies and innovation. It is argued, that one of the effective ways to ensure patient’s right to autonomy is implementation of legal instruments, such as informed consent, advance directives and Ulysses contracts. However, this article also proposes, that with a potential of new technologies and artificial intelligence, these legal instruments need to be reconsidered and transformed in more efficient and eligible model, presenting information in more individualized, appealing and convenient manner. (shrink)

Respect for autonomy is a key concept in contemporary bioethics and in ethics at the end of life in particular. An individualistic interpretation of autonomy may not incorporate the aspects of consideration that patients may have for their wider construct of personhood, which includes their love and consideration for their families. This anonymous case describes the intricacies of a patient’s decision making at the end of life, the choices she made, and how her decisions changed as her situation (...) evolved. The tension this produced within the medical team is unpacked using a lens of compassionate care in the intensive care unit. (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)

We analyzed stable patients’ views regarding synthetic biology in general, the medical application of synthetic biology, and their potential participation in trials of synthetic biology in particular. The aim of the study was to find out whether patients’ views and preferences change after receiving more detailed information about synthetic biology and its clinical applications. The qualitative study was carried out with a purposive sample of 36 stable patients, who suffered from diabetes or gout. Interviews were transcribed verbatim, translated and fully (...) anonymized. Thematic analysis was applied in order to examine stable patients’ attitudes towards synthetic biology, its medical application, and their participation in trials. When patients were asked about synthetic biology in general, most of them were anxious that something uncontrollable could be created. After a concrete example of possible future treatment options, patients started to see synthetic biology in a more positive way. Our study constitutes an important first empirical insight into stable patients’ views on synthetic biology and into the kind of fears triggered by the term “synthetic biology.” Our results show that clear and concrete information can change patients’ initial negative feelings towards synthetic biology. Information should thus be transmitted with great accuracy and transparency in order to reduce irrational fears of patients and to minimize the risk that researchers present facts too positively for the purposes of persuading patients to participate in clinical trials. Potential participants need to be adequately informed in order to be able to autonomously decide whether to participate in human subject research involving synthetic biology. (shrink)

The merit of Plato’s Laws remains largely untapped by those seeking genuinely collaborative models of the doctor–patient tie as alternatives to paternalism and autonomy. A persistent difficulty confronting proposed alternatives has been surpassing the notion of pronounced intellectual and values asymmetry favoring the doctor. Having discussed two prominent proposals, both of which evince marked paternalism, I argue that reflection on Plato yields four criteria that a genuinely collaborative model must meet and suggest how the Laws addresses them. In the (...) process, the Laws’ doctor–patient tie is shown to be far more nuanced than interpreters have previously observed. Although Plato’s account will not solve our own quandaries, it illustrates how one might retain asymmetry of a kind without capitulating to familiar oppositional modalities. Through this account, I hope to show that the Laws merits fuller inclusion in contemporary discussions than it has heretofore received. (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)

Chervenak and McCullough, authors of the most acknowledged ethical framework for maternal–fetal surgery, rely on the ‘ethical–obstetrical’ concept of the fetus as a patient in order to determine what is morally owed to fetuses by both physicians and the women who gestate them in the context of prenatal surgery. In this article, we reconstruct the argumentative structure of their framework and present an internal criticism. First, we analyse the justificatory arguments put forward by the authors regarding the moral status of (...) the fetus qua patient. Second, we discuss the internal coherence and consistency of the moral obligations those authors derive from that concept. We claim that some of the dilemmas their approach is purported to avoid, such as the debate about the independent moral status of the fetus, and the foundation of the moral obligations of pregnant women (towards the fetuses they gestate) are not, all things considered, avoided. Chervenak and McCullough construct the obligations of physicians as obligations towards entities with equal moral status. But, at the same time, they assume that the woman has an independent moral status while the moral status of the fetus is dependent on the decision of the woman to present it to a physician for care. According to the logic of their own argumentation, Chervenak and McCullough implicitly admit a different moral status of the woman and the fetus, which will lead to different ascription of duties of the physician than those they ascribed. (shrink)

Pickering, Newton-Howes, and Young assert that the traditional view of decisional capacity, premised on assessing patients’ abilities to communicate, understand, appreciate,...

Tape-recorded semi-structured interviews were conducted with 21 nursing aides and enrolled nurses in the geriatric clinic in Umeå, Sweden. The interviews focused on the difference between the care of demented and non-demented patients and ethical conflicts in dementia care. The results indicate that caregivers have problems in providing the demented patients with opportunities to act autonomously in everyday matters on the ward, mainly due to the difficulty of understanding what the patients wish and the fact that their wishes, when understood, (...) often seem irrational. Measures to provide the demented patients with more opportunities to act autonomously in everyday matters are suggested. (shrink)

Respect for an individual’s autonomy determines that doctors should inform patients if their illness is terminal. This becomes complicated when the terminal diagnosis is recent and death is imminent. The authors examine the admission to paediatric intensive care of an adolescent with terminal respiratory failure. While fully ventilated, the patient was kept sedated and comfortable but when breathing spontaneously he was capable of non-verbal communication and understanding. Once resedated and reintubated, intense debate ensued over whether to wake the patient (...) to tell him he was going to die. The authors discuss the ethical arguments that surrounded their decision. (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)

A moral problem arises when a patient refuses a treatment that would save her life. Should the patient be treated against her will? According to an influential approach to questions of biomedical ethics, certain considerations pertaining to individual autonomy provide a solution to this problem. According to this approach, we should respect the patient’s autonomy and, since she has made an autonomous decision against accepting the treatment, she should not be treated. This article argues against the view that (...) our answer to the question of whether or not the refusing patient ought to be treated should be based on these kinds of considerations pertaining to individual autonomy and maintains that finding a plausible answer to this question presupposes that we resolve questions concerning subjectivity and objectivity of individual wellbeing. (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)

Objectives: The aim of this study is to evaluate the views of cancer patients on patient rights in the context of the right to information and autonomy according to articles related to the issue in the “Patient Rights Regulation”. Methods: The research was conducted among cancer patients in the medical oncology department of a research and practice hospital using a random sampling method between June and September 2005. Data were collected during face-to-face interviews using a questionnaire. Results: There was (...) a high rate of positive response to the items that the patients have the right to be informed (86.5%), that the physician should inform the patient on the diagnosis and the treatment (92.3%) and that the physician is obliged to inform the patient (76.9%). Only 43.3% of the patients stated that the patient has the right to refuse the treatment recommended by the physician. The participants mostly agreed that the patient should participate in decisions about the treatment and that patient consent should be given (78.8%). Conclusions: There are extensive efforts in Turkey towards making patient rights a significant supportive component of health services. For patient rights to become a natural part of medical practice it is necessary to give priority to education of both patients and physicians about patient rights and to lay emphasis on an ethical approach in the patient–physician relationship. (shrink)

Disclosure in clinical practice is aimed at promoting patient autonomy, usually culminating in patient choice (e.g., to consent to an operation or not, or between different medications). In medical ethics, there is an implicit background assumption that knowing more about (X) automatically translates to greater, or more genuine, autonomy with respect to one's choices involving (X). I challenge this assumption by arguing that in rare cases, withholding information can promote a patient's autonomy (understood as the capacity (...) for rational choice in alignment with one's values and goals). (shrink)

Patient’s decision making competence is a widely discussed subject. Issues of competence, autonomy, well-being and protection of the patient come up every day. In this article we analyse what role PDMC plays in Dutch legislation and what dilemmas healthcare professionals may experience, notably in patients suffering from Korsakoff’s syndrome. Dilemmas emerge if professionals want to meet the requirements mentioned in Dutch law and the desires of their patients. The autonomy of the patient and the healthcare professionals’ duty to (...) take care of their patient’s best interests, create a tension and lead to uncomfortable situations. Healthcare professionals describe difficulty finding a balance between these issues and assessing the degree of mental competence still present. In long term care situations, quality of the relationship between healthcare professionals and their patients seems to be of much more importance in decision making on minor issues of competence than simply relying on legal or house rules. In being committed to their cases, professionals will be more sensitive to individuals habits, abilities, welfare and dignity, which will make it easier to decide on issues of competence, and to find creative solutions to their dilemmas. (shrink)

Definition of the problem. Voluntary active euthanasia is, in certain circumstances, morally permissible and should be permitted by law. Autonomous persons may have a fundamental interest in experiencing ”death in dignity” in accordance with their own preferences. This interest is protected by the concept of human dignity assumed by German law. Some prerequisites being met, the moral and legal autonomy right to determine the time and manner of one’s own death includes a right to secure active euthanasia from a (...) willing physician, and a physician’s acceding to the patient’s request be may morally the right thing to do. Arguments and conclusion: Most arguments against the justifiability of voluntary active euthanasia unveil their weakness when scrutinized. However, insofar as legalized voluntary active euthanasia would be subject to intolerable abuse, our policy options are dilemmatic, and the concept of human dignity as it has been taken for granted in German legal discourse, is questioned. There is no option other than seeking safety in legal procedures for every single case. (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)

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)

A 16 year old Hodgkin lymphoma patient refuses to have his blood specimen drawn, thus canceling his scheduled oncologic treatment. As a 16 year old, he has no legal standing as an adult. His parents are split over his decision. One supports his right to choose; the other wishes the specimen to be drawn and the chemotherapy reinstated. The physicians at the hospital are seeking legal redress to have the court order the blood specimens to be taken.

The concerns regarding patient autonomy presented in August A. Culbert et al.’s “Navigating Informed Consent and Patient Safety in Surgery: Lessons for Medical Students and Junior Trainees” fall just short of addressing the main issue. Patient autonomy is not something that just one member of a team should consider, and it should not be something that any protocol should have the power to subvert, particularly in an environment as tenuous as the operating room. This article will take the (...) concerns regarding the ethics of removing a patient’s hearing aid prior to entering the operating room presented in the aforementioned article and show the necessity for a new standard operating procedure. (shrink)

A number of bioethicists have been critical of the power of the family to “veto” a patient’s decision to posthumously donate her organs within opt-in systems of organ procurement. One major objection directed at the family veto is that when families veto the decision of their deceased family member, they do something wrong by violating or failing to respect the autonomy of that deceased family member. The goal of this paper is to make progress on answering this objection. I (...) do this in two stages. First, I argue that the most plausible interpretation of what happens when a person registers as an organ donor in an opt-in system is that she gives her consent to the state to posthumously remove her organs for transplantation purposes. Call this the Authorization Account. Second, given the Authorization Account, I argue by analogy that when families veto an individual’s decision to donate and the individual’s organs are not in the end removed, neither the doctors nor the family violate the individual’s autonomy in any morally objectionable sense. Call this the Nonremoval Thesis. I argue that since the Nonremoval Thesis is true, we do not violate or fail to respect the autonomy of registered donors when we fail to remove their organs because their family has objected. (shrink)

This book is the result of a long-standing clinical and educational cooperation between a medical psychologist (Bergsma) and a medical ethicist/philosopher (Thomasma). It is thoroughly interdisciplinary in its examination of the difficulties of honoring the patient's and the physician's autonomy, especially in light of the changes in health care worldwide today. Although autonomy has become the primary standard of bioethics, little has been done to link it to the ways people actually behave, nor to its roots in (...) the healing relationship. Combining as it does the disciplines of psychology and philosophy, this book is a step in that direction. (shrink)

Although informed consent is an integral part of clinical practice, its current doctrine remains mostly a matter of law and mainstream ethics rather than empirical research. There are scarce empirical data on patients’ perceived purpose of informed consent, which may include administrative routine/courtesy gesture, simple honest permission, informed permission, patient-clinician shared decision-making, and enabling patient’s self decision-making. Different purposes require different processes.

Background Older patients in emergency care often have complex needs and may have limited ability to make their voices heard. Hence, there are ethical challenges for healthcare professionals in establishing a trustful relationship to determine the patient’s preferences and then decide and act based on these preferences. With this comes further challenges regarding how the patient’s autonomy can be protected and promoted. Aim To describe nurses’ experiences of dealing with older patients’ autonomy when cared for in emergency departments (...) (EDs). Research design This study adopted reflective lifeworld theory and a phenomenological design. Participants and research context A total of 13 open-ended interviews were performed with nurses working at two EDs in Sweden. Ethical considerations The study was reviewed by the Ethical Advisory Board in South East Sweden and conducted according to the Declaration of Helsinki. All participants gave consent. Findings Nurses’ experiences of dealing with older patients’ autonomy in EDs are characterized by moving in a conflicting uphill struggle, indicating obscure thoughts on how patient autonomy can be protected in an ethically challenging context. The phenomenon is further described with its meaning constituents: ‘Being hampered by prioritization under stress’, ‘Balancing paternalism and patient autonomy’, ‘Making decisions without consent in the patient’s best interests’ and ‘Being trapped by notions of legitimate care needs’. Conclusion Stressful work conditions and lacking organizational strategies in EDs contribute to nurses maintaining unjustified paternalistic care, regardless of the patient’s ability and medical condition, and questioning who has legitimacy for participating in decisions about care. The nurses’ protection and promotion of older patients’ autonomy is dependent on the opportunity, ability and willingness to create a patient relationship where the patient’s voice and preferences are valued as important. Consequently, strategies are needed to improve patient autonomy in EDs based on the idea of ‘relational autonomy’. (shrink)

The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial of (...) values of social justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships. (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)

In the latter half of the 20th century, Western medicine moved death from the home to the hospital. As a result, the process of dying seems to have lost its spiritual dimension, and become a matter of prolonging material life by means of medical technology. The novel quandaries that arose led in turn to medico-legal regulation. This paper describes the recent regulation of dying in Israel under its Dying Patient Law, 2005. The Law recognizes advance directives in principle, but limits (...) their effect and form through complex medico-legal artifices. It reflects a culture that places high value on both scientific medicine and the sanctity of life as such, and illustrates a medical culture that pitches battle against death. At the same time, the Law constructs the will of the individual in a medico-legal language that is alien to the lay person. The paper suggests an alternative approach to advance care planning that is patient-centred and addresses the psycho-social needs of the individual in terms of her relational autonomy. From this perspective, advance care planning becomes an opportunity to extract the patient from the medical context and allow her to speak about her approaching death with close ones in her own terms of reference. To this end, there is a need for facilitation of an intimate encounter where patients can speak about their concerns with their loved ones. The paper also presents a methodological approach of attentive listening, which can be applied across diverse cultures and circumstances. (shrink)

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)