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)

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

Alasdair MacIntyre's recent thinking both about the concept of a practice and the existence of narrative unity in human life raises important questions about how we should view clinical medicine today. Is it possible for clinical medicine to pursue patient well-being in a society (allegedly) afflicted with what he calls modernity? Here it is argued that MacIntyre's pessimistic view of the individual in contemporary society makes his call for patient autonomy in the clinical (...) setting pointless. Finally, recent work in gerontology is cited to make three points: first, MacIntyre's pessimism about us is too extreme; second, the concept of a fictionalized personal history is closer to reality than either MacIntyre's notion of narrative unity or the ideas of his imagined opponent (Sartre); and finally, we should not expect clinical medicine to produce patient well-being, when this is understood narratively. (shrink)

BackgroundIn Saudi clinical settings, benevolent family care that reflects strongly held sociocultural values is commonly used to justify overriding respect for patient autonomy. Because the welfare of individuals is commonly regarded as inseparable from the welfare of their family as a whole, these values are widely believed to obligate the family to protect the welfare of its members by, for example, giving the family authority over what healthcare practitioners disclose to patients about their diagnoses and prognoses and (...) preventing them from making informed decisions about their healthcare.DiscussionFamily dominance over the healthcare decisions of competent patients is ethically problematic when the family prevent healthcare practitioners from disclosing diagnoses and prognoses to patients who have the capacity to consent and make decisions in their own best interests. Thus, the author holds that sociocultural values ought to be respected only when they do not prevent competent patients from knowing their diagnoses and prognoses or prevent them from making their own decisions.ConclusionHealthcare practitioners should not allow patients’ families to control what can or cannot be disclosed to competent patients. This is particularly important when patients are approaching death so that they may address their material and spiritual wishes—among other needs—as they prepare for death. Justification for this position is drawn from the Maqasid Al-Shariah-based Islamic bioethics approach, from which it is possible to argue that the harm of withholding diagnoses and prognoses from patients who are imminently dying outweighs the potential benefits. (shrink)

Currently in Japan, it is extremely difficult to realize the basic wish of protecting personal dignity at the end of life. A patient’s right to refuse life-sustaining treatment has not been substantially warranted, and advance directives have not been legally enforceable. Unfortunately, it is not until the patient is moribund that all concerned parties start to deliberate on whether or not death with dignity should be pursued. Medical intervention is often perceived as a worthwhile goal to not only (...) preserve life, but also provide psychological benefit to the family, regardless of its effect on the patient. To feel they are doing something, family members tend to act against the imperative “Do not inflict on others what you would not wish done to you,” and permit extraordinary measures they would not want themselves. Another complication in Japanese culture is the necessity of unanimous decisions for end-of-life care. If there is conflict between a patient and his/her family on accepting medical intervention, the view of the latter is more likely to prevail due to different perceptions of human dignity. As a result, incapacitated patients in Japanese clinical settings often suffer through extraneous medical procedures, particularly during end-of-life care. Patient dignity is in danger from a national refusal to accept major bioethical principles such as having respect for patient autonomy, serving the best interests of the patient, doing no harm, and ensuring fairness at the end of life. We argue that more education about human dignity and legislation for death with dignity are necessary. Peace of mind for patients during end-of-life care will never be achieved in this society unless drastic changes take place in medical ethics and law. (shrink)

Background There are several psychosocial and ethical issues surrounding the decision to be a living kidney donor. The present study aimed to determine the perceptions of psychosocial and ethical issues that living kidney donors may have, and analyze their psychological characteristics.Methods Face-to-face semi-structured interviews were conducted with 15 donors. Thematic analysis was then performed to categorize the thematic elements of the transcripts. All procedures were approved by the relevant review board.Results Four main categories were identified: Awareness of family dynamics, barriers (...) to a proper understanding, contrasting psychological effects of recipient presence in clinical practice, insufficient information explained in informed consent.Conclusion Donors felt that they took on the “role as a care giver” for the recipient and were less aware of themselves as patients. This is a new concept that has not been shown in previous studies. Donors exist within the recipient and family, and the range of their autonomy may go beyond the traditional concept of autonomy and be rooted in relational autonomy. This study suggested that medical treatment in the presence of the recipient promotes the relational autonomy of the donor. (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)

This book moves away from the frameworks that have traditionally guided ethical decision-making in the Western clinical setting, towards an inclusive, non-coercive and, reflective dialogic approach to moral decision-making. Inspired in part by Jürgen Habermas's discourse theory of morality and principles of communicative action, the book offers a proportionist approach as a way of balancing out the wisdom in traditional frameworks, set in the actual reality of the clinical situation at hand. Putting this approach into practice requires (...) having a conversation, a dialogue or a discourse, with collaboration amongst all the stakeholders. The aim of the dialogue is to reach consensus in the decision, via mutual understanding of the values held by the patient and others whom they see as significant. This book aims to underscore the moral philosophical foundations for having a meaningful conversation. Life and Death Decision in the Clinical Setting is especially relevant in our contemporary era, characterised medically by an ever-increasing armamentarium of life-sustaining technology, but also by increasing multiculturalism, a multiplicity of faiths, and increasing value pluralism. (shrink)

Issues concerning patients' rights are at the center of bioethics, but the political basis for these rights has rarely been examined. In Bioethics in a Liberal Society: The Political Framework of Bioethics Decision Making , Thomas May offers a compelling analysis of how the political context of liberal constitutional democracy shapes the rights and obligations of both patients and health care professionals. May focuses on how a key feature of liberal society -- namely, an individual's right to make independent decisions (...) -- has an impact on the most important relational facets of health care, such as patients' autonomy and professionals' rights of conscience. Although a liberal political framework protects individual judgments, May asserts that this right is based on the assumption of an individual's competency to make sound decisions. May uses case studies to examine society's approach to medical decision making when, for reasons ranging from age to severe mental disorder, a person lacks sufficient competency to make independent and fully informed choices. To protect the autonomy of these vulnerable patients, May emphasizes the need for health care ethics committees and ethics consultants to help guide the decision-making process in clinical settings. Bioethics in a Liberal Society is essential reading for all those interested in understanding how bioethics is practiced within our society. (shrink)

Current approaches in bioethics largely overlook the multicultural social environment within which most contemporary ethical issues unfold. For example, principlists argue that the common morality of society supports four basic ethical principles. These principles, and the common morality more generally, are supposed to be a matter of shared common sense. Defenders of case-based approaches to moral reasoning similarly assume that moral reasoning proceeds on the basis of common moral intuitions. Both of these approaches fail to recognize the existence of (...) multiple cultural and religious traditions in contemporary multicultural societies. In multicultural settings, patients and their families bring many different cultural models of morality, health, illness, healing, and kinship to clinical encounters. Religious convictions and cultural norms play significant roles in the framing of moral issues. At present, mainstream bioethics fails to attend to the particular moral worlds of patients and their family members. A more anthropologically informed understanding of the ethical issues that emerge within health care facilities will need to better recognize the role of culture and religion in shaping modes of moral deliberation. (shrink)

In the United States the delivery of health care traditionally has been hierarchical and strictly controlled by physicians. Physicians typically provided patients with little information about their diagnosis, prognosis, and treatment plan; patients were expected to follow their physicians’ orders and ask no questions. Beginning in the 1970s, with the widespread adoption of the doctrine of informed consent to treatment, the physician-patient relationship began to be more collaborative, although the extent of the change has been subject to debate. At (...) a minimum, physicians began to give patients more information and asked them to consent to recommended treatment, the therapeutic privilege to withhold information from patients lost support and eventually was repudiated, and physicians embraced — at least in theory — a more patient-centered conception of health care.More recently, health care and health promotion activities have moved beyond clinical encounters and the strict confines of physician-patient interactions. (shrink)

In the United States the delivery of health care traditionally has been hierarchical and strictly controlled by physicians. Physicians typically provided patients with little information about their diagnosis, prognosis, and treatment plan; patients were expected to follow their physicians’ orders and ask no questions. Beginning in the 1970s, with the widespread adoption of the doctrine of informed consent to treatment, the physician-patient relationship began to be more collaborative, although the extent of the change has been subject to debate. At (...) a minimum, physicians began to give patients more information and asked them to consent to recommended treatment, the therapeutic privilege to withhold information from patients lost support and eventually was repudiated, and physicians embraced — at least in theory — a more patient-centered conception of health care.More recently, health care and health promotion activities have moved beyond clinical encounters and the strict confines of physician-patient interactions. (shrink)

Contemporary American medical ethics was born during a period of social ferment, a key theme of which was the espousal of individual rights. Driven by complex cultural forces united in the effort to protect individuality and self-determined choices, an extrapolation from case law to rights of patients was accomplished under the philosophical auspices of ‘autonomy’. Autonomy has a complex history; arising in the modern period as the idea of self-governance, it received its most ambitious philosophical elaboration in Kant's (...) moral philosophy. In examining the Kantian construction, it is evident that neither his universal moral imperative nor his rigorous application of self-legislated ethical action can sustain our own notions of moral agency in a pragmatic, pluralistic society. But the Kantian position is useful in highlighting that self-governance is not equivalent to ‘autonomy’, and this distinction defines the limits of autonomy in the clinical setting. A critique of Engelhardt's idea of ‘principle of permission’ is used to illustrate autonomy's eclipse as a governing principle for medical ethics. (shrink)

Machine intelligence already helps medical staff with a number of tasks. Ethical decision-making, however, has not been handed over to computers. In this proof-of-concept study, we show how an algorithm based on Beauchamp and Childress’ prima-facie principles could be employed to advise on a range of moral dilemma situations that occur in medical institutions. We explain why we chose fuzzy cognitive maps to set up the advisory system and how we utilized machine learning to train it. We report on the (...) difficult task of operationalizing the principles of beneficence, non-maleficence and patient autonomy, and describe how we selected suitable input parameters that we extracted from a training dataset of clinical cases. The first performance results are promising, but an algorithmic approach to ethics also comes with several weaknesses and limitations. Should one really entrust the sensitive domain of clinical ethics to machine intelligence? (shrink)

In this article I discuss the little examined relationship between time and patient autonomy. Using the findings from a study on the experience of premenopausal cancer patients making fertility preservation decisions during their treatment, I focus on how the patients in the study understood time, and how this understanding interacted with and influenced their decision-making. I then analyse in more depth the importance of time in patient decision-making, and the relationship of time to concepts of patient (...) autonomy and decision-making in the field of bioethics more generally. Focusing on the relational conception of autonomy, I conclude that time is an integral part of patient autonomy which warrants further research, such that it can be better integrated into concepts of patient autonomy, and the policy and guidelines that they inform and influence. (shrink)

ABSTRACT In contemporary American medical practice, certain physicians are critical and wary of the current emphasis on patient autonomy in medicine, questioning whether it really serves the complex needs of severely ill patients. Physicians such as Eric Cassell and Thomas Duffy argue that the duty of beneficence should override the duty to respect autonomy when conflicts arise in clinical situations. After evaluating their claim that severe illness robs patients of their autonomy, I will argue (...) that this perceived conflict between beneficence and autonomy is ill‐conceived, resting on misperceptions about both the capacity for autonomy and the meaning of hope. Considering insights on hope from phenomenologist Gabriel Marcel and theologian William Lynch, as well as drawing upon a case study involving a bone marrow patient, I claim that respecting and nurturing patients’ capacity for autonomy is a necessary condition for acting beneficently and fostering authentic hope. (shrink)

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an (...) informed, autonomous decision to be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters. (shrink)

The practice of medicine—and especially the patient-doctor relationship—has seen exceptional shifts in ethical standards of care over the past few years, which by and large originate in occidental countries and are then extrapolated worldwide. However, this phenomenon is blind to the fact that an ethical practice of medicine remains hugely dependent on prevailing cultural and societal expectations of the community in which it serves. One model aiming to conceptualise the dichotomous efforts for global standardisation of medical care against differing (...) sociocultural expectations is the individualism-collectivism model, with the ‘West’ being seen as individualistic and the ‘East’ being seen as collectivistic. This has been used by many academics to explain differences in approach towards ethical practice on key concepts such as informed consent and patient autonomy. However, I argue that this characterisation is incomplete and lacks nuance into the complexities surrounding cross-cultural ethics in practice, and I propose an alternative model based on the ethics of clinical care in Hong Kong, China. Core ethical principles need not be culture-bound—indeed, their very existence mandates for them to be universal and non-derogable—but instead cultural alignment occurs in the particular implementation of these principles, insofar as they respect the general spirit of contemporary ethical standards. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Principles and Theory in BioethicsPat Milmoe McCarrick (bio)The following citations were selected from BIOETHICSLINE, the online database prepared at the Kennedy Institute of Ethics for the National Library of Medicine's MEDLARS system. Searching the keywords autonomy, beneficence, casuistry, justice, and virtues, as well as the text word principlism produced more than 400 citations. Only the citations concerned with theory and principle in the practice of bioethics are included (...) here—e.g., works about justice in resource allocation have been deleted.Arkes, Hadley V. When Bungling Practice Is Joined to Absurd Theory: Doctors, Philosophers, and the Right to Die. In Set No Limits: A Rebuttal to Daniel Callahan's Proposal to Limit Health Care for the Elderly, ed. Robert L. Barry and Gerard V. Bradley, pp. 31-44. Urbana: University of Illinois Press, 1991.Arnason, Vilhjalmur. Towards Authentic Conversations: Authenticity in the Patient-Professional Relationship. Theoretical Medicine 15 (3): 227-42, September 1994.Arras, John D. Getting Down to Cases: The Revival of Casuistry in Bioethics. Journal of Medicine and Philosophy 16 (1): 29-51, February 1991.Arras, John D. Principles and Particularity: The Role of Cases in Bioethics. Indiana Law Journal 69 (4): 983-1014, Fall 1994.Beauchamp, Tom L. Principles and Other Emerging Paradigms in Bioethics. Indiana Law Journal 69 (4): 955-71, Fall 1994.Beauchamp, Tom L. The Principles Approach. Hastings Center Report 23 (6): S9, November-December 1993.Beauchamp, Tom L., and Childress, [End Page 279] James F. Principles of Biomedical Ethics. 4th ed. New York: Oxford University Press, 1994. 752 p.Beauchamp, Tom L., and Walters, LeRoy. Ethical Theory and Bioethics. In their Contemporary Issues in Bioethics. 4th ed., pp. 1-38. Belmont, CA: Wadsworth, 1994.Beldecos, Athena, and Arnold, Robert M. Gathering Information and Casuistic Analysis. [Commentary]. Journal of Clinical Ethics 4 (3): 241-45, Fall 1993.Bole, Thomas J. The Rhetoric of Rights and Justice in Health Care. In Rights to Health Care, ed. Thomas J. Bole and William B. Bondeson, pp. 1-19. Boston: Kluwer Academic, 1991.Broome, John. Fairness Versus Doing the Most Good. [Commentary]. Hastings Center Report 24 (4): 36-39, July-August 1994.Campbell, Courtney S. Gifts and Caring Duties in Medicine. In Duties to Others, ed. Courtney S. Campbell and B. Andrew Lustig, pp. 181-97. Boston: Kluwer Academic, 1994.Carson, Ronald A.; Callahan, Sidney; Ross, Judith Wilson; and May, William F. Spirit, Emotion, and Meaning: The Many Voices of Bioethics. Hastings Center Report 24 (3): 26-27, May-June 1994.Charlesworth, Max. Bioethics in a Liberal Society. New York: Cambridge University Press, 1993. 172 p.Cherbas, Peter. Paradigms and Our Shrinking Bioethics. Indiana Law Journal 69 (4): 1105-13, Fall 1994.Childress, James F. Ethical Theories, Principles, and Casuistry in Bioethics: An Interpretation and Defense of Principlism. In Religious Methods and Resources in Bioethics, ed. Paul F. Camenisch, pp. 181-201. Boston: Kluwer Academic, 1994.Childress, James F., and Fletcher, John C. Individualism and Community: The Contested Terrain of Respect for Autonomy. Hastings Center Report 24 (3): 34-35, May-June 1994.Clouser, K. Danner, and Gert, Bernard. A Critique of Principlism. Journal of Medicine and Philosophy 15 (2): 219-36, April 1990.Devettere, Raymond J. Clinical Ethics and Happiness. Journal of Medicine and Philosophy 18 (1): 71-89, February 1993.DeGrazia, David. Moving Forward in Bioethical Theory: Theories, Cases, and Specified Principlism. Journal of Medicine and Philosophy 17 (5): 511-39, October 1992.Donnelly, William J. From Principles to Principals: The New Direction in Medical Ethics. [Commentary]. Theoretical Medicine 15 (2): 141-48, June 1994.Downie, Robin. Health Care Ethics and Casuistry. [Editorial]. Journal of Medical Ethics 18 (2): 61-62, 66, June 1992. [End Page 280]DuBose, Edwin R.; Hamel, Ronald P.; and O'Connell, Laurence J., eds. A Matter of Principles? Ferment in U.S. Bioethics. Valley Forge, PA: Trinity Press International, 1994. 381 p.Fox, Renée C. The Entry of U.S. Bioethics into the 1990s: A Sociological Analysis, pp. 21-71.Gudorf, Christine E. A Feminist Critique of Biomedical Principlism, pp.164-81.Campbell, Courtney S. Principlism and Religion: The Law and the Prophets, pp. 182-208.Charon, Rita. Narrative Contributions to Medical Ethics: Recognition, Formulation, Interpretation, and Validation... (shrink)

Clinical bioethics plays a significant role in hospital settings through bioethics consultations, which focus on providing ongoing assistance in complex situations within the doctor-patient dynamic. These consultations entail regular interaction between physicians and clinical bioethicists. This situation prompts an exploration into how bioethics consultations affect physicians. The current research aims to understand the influence of bioethics consultations on physicians’ bioethical knowledge by analyzing the lexical content in their patients’ medical records. Medical records are a synthesis carried out (...) by physicians, often reflecting collaborative efforts, and capturing verbal statements indicative of thought processes suggestive of learning. The study is a sequential mixed-methods design with a retrospective descriptive approach, comparing medical records from the early years of the Department of Humanism and Bioethics’ operation (2013–2015) to the more recent ones (2019). Technical bioethical terminology such as “therapeutic effort limitation,” “futility,” “beneficence,” and “respect for autonomy” is more prevalent in recent medical records. This trend may stem from the positive impact of bioethics consultations conducted by the Department, with haptic communication serving as a particularly effective form of interaction with others during experiences of moral distress. This appears to be characteristic of cultures like those in Latin America. (shrink)

In his essay on paternalism and personal identity, Wilkinson draws on Derek Parfit’s Reasons and Persons (1984) to call for a reappraisal of the role of paternalism in healthcare decision-making in situations in which patients with capacity make decisions which are likely to have harmful consequences for themselves.1 The imperative to respect autonomy, coupled with JS Mill’s insistence that the state is justified in interfering with an individual’s liberty only in situations in which she harms or threatens to harm (...) another person, leaves clinicians with little room to constrain decisions in which a patient’s choice may seriously harm her. Parfit reduces personal identity to the continuity of psychological and physical traits across the lifecourse, and suggests that, since these sets of characteristics change significantly over time, it may make more sense to view a person at different time points as different ‘selves’, rather than as the same person. Parfit’s defence of paternalism involves arguing that, given this inevitable lack of continuity, causing harm to one’s future self is analogous to harming another person and that intervening to prevent this may be justifiable in accordance with the Harm Principle.2 The issue of personal identity has received considerable attention in the philosophical literature and it remains a vexed question. Parfit’s argument, along with the thought experiments on …. (shrink)

Kant's concept of autonomy and the Kantian notion of autonomy are often conflated in bioethics. However, the contemporary Kantian notion has very little at all to do with Kant's original. In order to further bioethics discourse on autonomy, I critically distinguish the contemporary Kantian notion from Kant's original concept of moral autonomy. I then evaluate the practical relevance of both concepts of autonomy for use in bioethics. I argue that it is not appropriate (...) to appeal to either concept toward assessing which patients we ought to respect as autonomous. Finally, I sketch criteria for what I take to be a more promising concept of autonomy for patients. (shrink)

The Clinical ethics centre in Paris offers its services equally to doctors and patients/proxies. Its primary goal is to re-equilibrate doctor–patient roles through giving greater voice to patients individually in medical decisions. Patients are present at virtually all levels, initiating consults, providing their point of view and receiving feedback. The implications of patients' involvement are threefold. At an operational level, decision-making is facilitated by repositioning the debate on ethical grounds and introducing a dynamic of decisional partnership, although contact (...) with patients can make it difficult to deny their demands and set the limits of our role. Ethically, it reinforces patients' autonomy and grants them a place of veritable ethics ‘actors’, with the danger that this may become excessively autonomy oriented. Finally, at a collective level, the programme fulfils its political purpose in promoting patients' rights and the ideal of démocratie sanitaire, but complicates balancing individual demands with collective values. (shrink)

Clinical ethics takes on a special cast in a rehabilitation clinic for psychosis where many patients come from severely disadvantaged backgrounds and many suffer from fluctuating decisional capacity. This paper illustrates several ethical issues—truth telling and partiality, prescribing concealed medication, questionable billing practices, industry collaboration, limits of confidentiality, grounds for abandonment and the primacy of autonomy—in the hope that discussing such matters will lead to a clearer framework for work with this population.

ObjectiveTo assess the scientific and ethical basis for clinical innovation in psychopharmacology.MethodsWe conducted a literature review, utilizing MEDLINE search and bibliographic cross-referencing, and historical evidence regarding the discovery and development of new medications in psychiatry. Clinical innovation was defined as use of treatments in a clinical setting which have not been well-proven in a research setting.ResultsEmpirical data regarding the impact of clinical innovation in psychopharmacology are lacking. A conceptual and historical assessment of this topic (...) highlights the ethical and scientific importance of clinical innovation. Ethically, it touches a borderline that, in our judgment, is not adequately framed in contemporary mainstream bioethics. Currently, research is viewed as not at all benefiting the patients who participate in it, while clinical care is viewed as being solely for the benefit of patients. Clinical innovation straddles these two worlds, uncomfortably at times. While many argue that clinical innovation should either be avoided or folded into research projects, we argue that clinical innovation is necessary for progress in psychopharmacology research, and that it can prosper best when guided by the following ethical principles: 1.) The treatment should be based on a viable hypothesis. 2.) Whenever possible, one's clinical observations should be reported so they can be evaluated by the scientific community. 3.) One should be willing to report unexpected observations of drug effects. 4.) A high standard of informed consent should be maintained. Again, this proposal goes against the standard view among bioethicists that research and clinical care are categorically opposed activities, as made clear by the either-or dichotomy of the Belmont Report on bioethics. This approach has so polarized our profession into clinicians versus researchers, that many clinicians will not apply new knowledge produced by clinical research until it eventually gets incorporated into formal treatment guidelines, while researchers have little to guide them as to what kind of new knowledge it is most important to provide.SummaryClinical innovation brings out the ambiguities in our current ethical conceptions of research versus clinical care. Yet, historically, clinical innovation has been an important contributor to progress in psychopharmacology. We argue that clinical innovation should not be discouraged, but rather it should occur under certain ethical conditions."Almost everyone can and should do research...because almost everyone has a unique observational opportunity at some time in his life which he has an obligation to record....If one considers the fundamental operations or methods of research, one immediately realizes that most people do research at some time or another, except that they do not call their activity by that name. There are seven operations....In simple language they are counting, sorting, measuring, comparing, nature-study, guess testing, and reappraisal....Guess testing is of course what most people think of when the word research is mentioned; except that it is bad manners to call a guess a guess. It should be called an hypothesis. Let us make one plea. Guessing becomes merely a game unless it is done in the context of a plan for action. It is a waste of time elaborating untestable hypotheses [1]."John Cade. (shrink)

This essay explores the evolution of the tension between the principles of autonomy and beneficence in American health care over the past several decades. In retrospect it is clear that the social movements of the 1960s and 70s set the tone and the goals for the emergence of a new emphasis on patient autonomy. Indeed, the impact of civil liberties-minded lawyers on the promotion of a commitment to autonomy is far more vital than the term “bioethics” (...) commonly suggests. Tracing the impact of this principle on clinical encounters over the past 25 years makes apparent that consumers have extended their influence over a wide range of treatment decisions. This influence is now being reinforced by an extraordinary information revolution, which includes the computer, the web, the dot.coms, the search engines, and such novel practices as Direct-to-Consumer advertising by pharmaceutical companies. The impact of these developments may be seen in such diverse issues as physician-assisted suicide and the failure of national health insurance initiatives. (shrink)

Through its adoption of the biomedical model of disease which promotes medical individualism and its reliance on the individual-based anthropology, mainstream bioethics has predominantly focused on respect for autonomy in the clinical setting and respect for person in the research site, emphasizing self-determination and freedom of choice. However, the emphasis on the individual has often led to moral vacuum, exaggeration of human agency, and a thin (liberal?) conception of justice. Applied to resource-poor countries and communities within developed (...) countries, autonomy-based bioethics fails to address the root causes of diseases and public health crises with which individuals or communities are confronted. A sociological explanation of disease causation is needed to broaden principles of biomedical ethics and provides a renewed understanding of disease, freedom, medical practice, patient-physician relationship, risk and benefit of research and treatment, research priorities, and health policy. (shrink)

The right to refuse medical intervention is well established, but it remains unclear how best to respect and exercise this right in life support. Contemporary ethical guidelines for critical care give ambiguous advice, largely because they focus on the moral equivalence of withdrawing and withholding care without confronting the very real differences regarding who is aware and informed of intervention options and how patient values are communicated and enacted. In withholding care, doctors typically withhold information about interventions judged (...) too futile to offer. They thus retain greater decision-making burden and face weaker obligations to secure consent from patients or proxies. In withdrawing care, there is a clearer imperative for the doctor to include patients in decisions, share information and secure consent, even when continued life support is deemed futile. How decisions to withhold and withdraw life support differ ethically in their implications for positive versus negative interpretations of patient autonomy, imperatives for consent, definitions of futility and the subjective evaluation of benefits and burdens of life support in critical care settings are explored. Professional reflection is required to respond to trends favouring a more positive interpretation of patient autonomy in the context of life support decisions in critical care. Both the bioethics and critical care communities should investigate the possibilities and limits of growing pressure for doctors to disclose their reasoning or seek patient consent when decisions to withhold life support are made. (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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BackgroundEnhancement involves the use of biomedical technologies to improve human capacities beyond therapeutic purposes. It has been well documented that enhancement is sometimes difficult to distinguish from treatment. As a subtype of enhancement, neuroenhancement aims to improve one’s cognitive or emotional capacities.Main bodyThis article proposes that the notion of neuroenhancement deserves special attention among enhancements in general, because apart from the notion of treatment, it also overlaps with other concepts such as prevention, pain relief, and pleasure seeking. Regarding prevention, patients’ (...) mental endurance can be enhanced when a patient is prescribed a selective serotonin reuptake inhibitor for the purpose of preventing the relapse of depression following a stressful situation. As for pain relief, psychiatrists use medication to alleviate distress in patients who experience various types of anxiety; the alleviation of distress is equal to psychological pain relief, but is also an enhancement of the patient’s temperamental traits. Regarding pleasure seeking, insidious transition exists between neuroenhancement and pleasure seeking when using psychotropic drugs. It is well known that people use psychostimulants for recreational purposes and to induce overconfidence in one’s performance. The polysemy of psychotropics derives from their effects on human sensibility. Therefore, when using psychotropic agents, psychiatrists should pay close attention to what the agent is used for on each patient in each situation, and explicitly share the continuity and overlap in the purpose of prescribing a medication with the patients to make a better clinical decision.ConclusionsThe notion of neuroenhancement overlaps not only with the notion of treatment, but also with other concepts of prevention, pain relief, and pleasure seeking. The continuity between those concepts makes the issues concerning the prescription of psychotropic drugs subtler. Psychiatrists should explicitly share the continuity with the patients to make a better clinical decision. (shrink)

Background Although the importance of clinical ethics in contemporary clinical environments is established, development of formal clinical ethics services in the Australia health system has, to date, been ad hoc. This study was designed to systematically follow and reflect upon the first 18 months of activity by a newly established service, to examine key barriers and facilitators to establishing a new service in an Australian hospital setting. Methods: how the study was performed and statistical tests (...) used A qualitative case study approach was utilised. The study gathered and analysed data using observations of service committee meetings, document analysis of agendas and minutes, and semi-structured interviews with committee members to generate semantic themes. By interpreting the thematic findings in reference to national capacity building resources, this study also aimed to provide practice-based reflections for other health agencies. Results: the main findings An overarching theme identified in the data was a strong commitment to supporting clinicians facing difficult patient care decisions and navigating difficult discussions with patients and families. Another key theme was the role of the new clinical ethics support service in providing clinicians with a pathway to raise system-wide issues with the organisation Executive. While there was strong clinical engagement, consumer and community participation remained a challenge, as did unresolved governance issues and a need for clearer policy relationship between the service and the organisation. Conclusions: brief summary and potential implications Considering these themes in relation to the national capacity building resources, the study identifies three areas likely to require ongoing development and negotiation. These are: the role of the clinical ethics support service as a link between the workforce and the Executive; the incorporation of consumers and patients; and ethical reasoning. To improve the effectiveness of the service, it is necessary to increase clarity on the service’s role at the governance and policy level, as well as develop strategies for engaging consumers, patients and families. Finally, the capacity of the service to reflect on complex cases may be enhanced through explicit discussions of various different ethical frameworks and ways of deliberating. (shrink)

Evidence suggests that one reason doctors provide certain interventions in assisted reproductive technologies (ART) is because of patient demand. This is particularly the case when it comes to unproven interventions such as ‘add‐ons’ to in vitro fertilisation (IVF) cycles, or providing IVF cycles that are highly unlikely to succeed. Doctors tend to accede to demands for such interventions because patients are willing to do and pay ‘whatever it takes’ to have a baby. However, there is uncertainty as to what (...) moral weight should be placed on patient‐led demands in ART, including whether it is acceptable for such demands to be invoked as a justification for intervention. We address this issue in this paper. We start by elucidating what we mean by ‘patient‐led demand’ and synthesise some of the evidence for this phenomenon. We then argue that a doctor's professional role morality (PRM) yields special responsibilities, particularly in commercialised healthcare settings such as ART, because of the nature of professions as social institutions that are distinct from markets. We argue on this basis that, while there may be reasons (consistent with PRM) for doctors to accede to patient demand, this is not always the case. There is often a gap in justification between acceding to patient‐led demands and providing contested interventions, particularly in commercial settings. As a result, acceding to demand in such settings needs a strong justification to be consistent with PRM. (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 paper we consider the three categories offered by Howard Brody for understanding power in medicine. In his book, The Healer's Power Brody separates out power in medicine into the categories of Aesculapian, Social, and Charismatic power. We examine these three categories and then apply them to a case. In this case set in an Obstetric ward, a junior member of the medical staff makes a clinical decision about a patient. This clinical decision is overruled by (...) a senior medical staff member who then carries out his plan with disastrous consequences for the woman and her baby. This case challenges the three categories of power offered by Brody and highlights the need for a further category of Hierarchical power to be added to Brody's framework. We conclude by suggesting that there is a need to recognise the discrepancy in power not only between physician and patient but also between senior and junior staff in a clinical setting. (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)

Would primary care services benefit from the aid of a clinical ethics committee (CEC)? The implementation of CECs in primary care in four Norwegian municipalities was supported and their activities followed for 2.5 years. In this study, the CECs’ structure and activities are described, with special emphasis on what characterizes the cases they have discussed. In total, the four CECs discussed 54 cases from primary care services, with the four most common topics being patient autonomy, competence and (...) coercion; professionalism; cooperation and disagreement with next of kin; and priority setting, resource use and quality. Nursing homes and home care were the primary care services most often involved. Next of kin were present in 10 case deliberations, whereas patients were never present. The investigation indicates that it might be feasible for new CECs to attain a high level of activity including case deliberations within the time frame. It also confirms that significant, characteristic and complex moral problems arise in primary care services. (shrink)

In contemporary liberal ethics patient autonomy is often interpreted as the right to self-determination: when it comes to treatment decisions, the patient is given the right to give or withhold informed consent. This paper joins in the philosophical and ethical criticism of the liberal interpretation as it does not regard patient autonomy as a right, rule or principle, but rather as a practice. Patient autonomy, or so I will argue, is realised in (...) the concrete activities of day-to-day health care, in the material and technological context of care, in arrangements of health care institutions, in the physical training of people with disabilities, as well as in the concrete activities of care-giving. This move from conversations in the consultation room to other sites and situations in the practice of care takes seriously the empirical reality of medical care and intends to show that patient autonomy is practically realised in a much richer and more creative way than most ethical theory seems to assume. (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)

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)

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)

“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)

Physicians' duties to their patients traditionally have been construed narrowly in time and scope to focus on the specific episode of care or clinical encounter. Physicians generally have had no ethical or legal duty to notify patients about new medical information discovered after a visit, notwithstanding the health care benefits to patients that might flow from receiving the information. The rule was based on the relatively high burdens that notification would impose on physicians compared with the likelihood of benefits (...) to patients. This established view, however, no longer may be appropriate in light of new physician-patient relationships and the reduced burden of patient notification using new types of health information technology. This article explores the duty to inform patients and former patients about relevant, medical developments subsequent to their episode of care. It concludes by recommending the recognition in ethics and law of a limited, ongoing duty to notify patients of significant information relevant to their health. (shrink)

Spirituality or religion often presents as a foreign element to the clinical environment, and its language and reasoning can be a source of conflict there. As a result, the use of spirituality or religion by patients and families seems to be a solicitation that is destined to be unanswered and seems to open a distance between those who speak this language and those who do not. I argue that there are two promising approaches for engaging such language and helping (...) patients and their families to productively engage in the decision-making process. First, patient-centered interviewing techniques can be employed to explore the patient's religious or spiritual beliefs and successfully translate them into choices. Second, and more radically, I suggest that in some more recalcitrant conflicts regarding treatment plans, resolution may require that clinicians become more involved, personally engaging in discussion and disclosure of religious and spiritual worldviews. I believe that both these approaches are supported by rich models of informed consent such as the transparency model and identify considerations and circumstances that can justify such personal disclosures. I conclude by offering some considerations for curbing potential unprofessional excesses or abuses in discussing spirituality and religion with patients. (shrink)

Personal autonomy is often lauded as a key value in contemporary Western bioethics. Though the claim that there is an important relationship between autonomy and rationality is often treated as uncontroversial in this sphere, there is also considerable disagreement about how we should cash out the relationship. In particular, it is unclear whether a rationalist view of autonomy can be compatible with legal judgments that enshrine a patient's right to refuse medical treatment, regardless of whether (...) the reasons underpinning the choice are known and rational, or indeed whether they even exist. Jonathan Pugh brings recent philosophical work on the nature of rationality to bear on the question of how we should understand personal autonomy in contemporary bioethics. In doing so, he develops a new framework for thinking about the concept of autonomy, one that is grounded in an understanding of the different roles that rational beliefs and rational desires have to play in it. Pugh's account allows for a deeper understanding of d the relationship between our freedom to act and our capacity to decide autonomously. His rationalist perspective is contrasted with other prominent accounts of autonomy in bioethics, and the revisionary implications it has for practical questions in biomedicine are also outlined. (shrink)

The rise of managed care initiated a steady decline in solo and small group physician practices and the emergence of new delivery models built around large health care organizations. Health care reform has only accelerated this trend as public and private payors shift to new payment methodologies that reward clinical and financial integration among providers. As a result, patients increasingly receive care from physicians and other health professionals organized into collaborative partnerships with one another and institutional providers, such as (...) hospitals. As described below, this new organizational dynamic profoundly influences the clinical judgment of physicians. No longer can society simply depend on the professionalism of individual physicians to ensure ethical integrity in the health care setting. Rather, ethical integrity in the health care setting also requires a strong foundation of organizational ethics. (shrink)

The clinical application of the concept of patient autonomy has centered on the ability to deliberate and make treatment decisions (decisional autonomy) to the virtual exclusion of the capacity to execute the treatment plan (executive autonomy). However, the one-component concept of autonomy is problematic in the context of multiple chronic conditions. Adherence to complex treatments commonly breaks down when patients have functional, educational, and cognitive barriers that impair their capacity to plan, sequence, and carry (...) out tasks associated with chronic care. The purpose of this article is to call for a two-component re-conceptualization of autonomy and to argue that the clinical assessment of capacity for patients with chronic conditions should be expanded to include both autonomous decision-making and autonomous execution of the agreed-upon treatment plan. We explain how the concept of autonomy should be expanded to include both decisional and executive autonomy, describe the biopsychosocial correlates of the two-component concept of autonomy, and recommend diagnostic and treatment strategies to support patients with deficits in executive autonomy. (shrink)

Ethical dilemmas are part of medicine, but the type of challenges, the frequency of their occurrence and the nuances in the difficulties have not been systematically studied in low-income settings. The objective of this paper was to map out the ethical dilemmas from the perspective of Ethiopian physicians working in public hospitals. A national survey of physicians from 49 public hospitals using stratified, multi-stage sampling was conducted in six of the 11 regions in Ethiopia. Descriptive statistics were used and the (...) responses to the open-ended question “If you have experienced any ethical dilemma, can you please describe a dilemma you have encountered in your own words?” were analyzed using a template analysis process. A total of 587 physicians responded, and 565 met the inclusion criteria. Twelve of 24 specified ethically challenging situations were reported to be experienced often or sometimes by more than 50% of the physicians. The most frequently reported challenge concerned resource distribution: 93% agreed that they often or sometimes had to make difficult choices due to resource limitation, and 83% often or sometimes encountered difficulties because patients were unable to pay for the preferred course of treatment. Other frequently reported difficulties were doubts about doing good or harming the patient, relating to conflicting views, concern for family welfare, disclosure issues and caring for patients not able to consent. Few reported dilemmas related to end-of-life issues. The 200 responses to the open-ended question mirrored the quantitative results. Ethiopian physicians report ethical challenges related more to bedside rationing and fairness concerns than futility discussions and conflicts about autonomy as described in studies from high-income countries. In addition to the high report of experienced challenges, gravity of the dilemmas that are present in their narratives are striking. Recognition of the everyday experiences of physicians in low-income settings should prompt the development of ethics teaching and support mechanisms, discussion of ethical guidelines as well as increase our focus on how to improve the grave resource scarcity they describe. (shrink)

The pluralism of methodologies and severe time constraints pose important challenges to pedagogy in clinical ethics. We designed a step-by-step student handbook to operate within such constraints and to respect the methodological pluralism of bioethics and clinical ethics. The handbook comprises six steps: Step 1: What are the facts of the case?; Step 2: What are your obligations to your patient?; Step 3: What are your obligations to third parties to your relationship with the patient?; Step (...) 4: Do your obligations converge or conflict?; Step 5: What is the strongest objection that could be made to the identification of convergence in step 4 or the arguments in step 4? How can this objection be effectively countered?; and Step 6: How could the ethical conflict, or perceived ethical conflict, have been prevented? (shrink)

Advance directives are not a part of the healthcare service in Turkey. This may be related with the fact that paternalism is common among the healthcare professionals in the country, and patients are not yet integrated in the decision-making process adequately. However, starting from the enactment of the Regulation of Patient Rights in 1998, this situation started to change. While the paternalist tradition still appears to be strong in Turkey, the Ministry of Health has been taking concrete measures in (...) the recent years to ensure that patient rights are implemented in healthcare practice. Therefore, Turkey now seems to be in a transitional period where a move towards a more patient-autonomy centred approach is being supported by the regulatory authorities, as well as the academic circles and the public at large. In the light of this background, this paper aims to examine the potential benefits of advance directives, particularly with regard to their possible effect in the clinical decision-making process of Turkey's context. It will be argued that advance directives, if correctly understood and implemented in the right settings, may be beneficial, particularly for improving communication between patients and healthcare professionals and for implementing of the right to refuse treatment. (shrink)

Next SectionThe principle of respect for autonomy has shaped much of the bioethics' discourse over the last 50 years, and is now most commonly used in the meaning of respecting autonomous choice. This is probably related to the influential concept of informed consent, which originated in research ethics and was soon also applied to the field of clinical medicine. But while available choices in medical research are well defined, this is rarely the case in healthcare. Consideration of ordinary (...) medical practice reveals that the focus on patient choice does not properly grasp the moral aspects involved in healthcare. Medical decisions are often portrayed as if doctors and patients in confidence confront specific decisions about examinations or treatment, yet the reality often involves many different participants, with decisions being made over time and space. Indeed, most of the decisions are never even presented to patients, as it would be unethical to suggest something that is not medically justifiable. The options patients do confront are somewhat arbitrarily constructed within the narrow framework of both what is deemed to be medically appropriate and how the healthcare system is organised practically. While the autonomy discourse has proven valuable, a failure to distinguish between the fields of medical research and clinical medicine has generated a focus on patient choice that does not reflect what is really at stake in healthcare settings. This is alarming, because the current discourse misrepresents medical practice in a way that actually contributes to bioethical self-delusion. (shrink)