Concept Of Patient Autonomy Research Articles

Artificial Intelligence, Social Media and Depression. ‘Patient’ Autonomy Revisited

"Artificial Intelligence (AI) systems are increasingly being developed and various applications are already used in medical practice. This development promises improvements in prediction, diagnostics and treatment decisions. As one example, in the field of psychiatry, AI systems can already successfully detect markers of mental disorders such as depression. By using data from social media (e.g. Instagram or Twitter), users who are at risk of mental disorders can be identified. This potential of AI-based depression detectors (AIDD) opens chances, such as quick and inexpensive diagnoses, but also leads to ethical challenges especially regarding users’ autonomy. The focus of the presentation is on autonomy-related ethical implications of AI systems using social media data to identify users with a high risk of suffering from depression. First, technical examples and potential usage scenarios of AIDD are introduced. Second, it is demonstrated that the traditional concept of patient autonomy according to Beauchamp and Childress does not fully account for the ethical implications associated with AIDD. Third, an extended concept of “Health-Related Digital Autonomy” (HRDA) is presented. Conceptual aspects and normative criteria of HRDA are discussed. As a result, HRDA covers the elusive area between social media users and patients. "

Artificial Intelligence, Social Media and Depression. A New Concept of Health-Related Digital Autonomy

The development of artificial intelligence (AI) in medicine raises fundamental ethical issues. As one example, AI systems in the field of mental health successfully detect signs of mental disorders, such as depression, by using data from social media. These AI depression detectors (AIDDs) identify users who are at risk of depression prior to any contact with the healthcare system. The article focuses on the ethical implications of AIDDs regarding affected users’ health-related autonomy. Firstly, it presents the (ethical) discussion of AI in medicine and, specifically, in mental health. Secondly, two models of AIDDs using social media data and different usage scenarios are introduced. Thirdly, the concept of patient autonomy, according to Beauchamp and Childress, is critically discussed. Since this concept does not encompass the specific challenges linked with the digital context of AIDDs in social media sufficiently, the current analysis suggests, finally, an extended concept of health-related digital autonomy.

The de-coders: A historical perspective of the genetic counseling profession.

The genetic counseling profession is a relatively new medical specialty that has evolved over time in keeping with advanced in the medical genetics field. Genetic counselors are master's-level trained individuals who apply their skills to assist patients in understanding the genetic etiology of disease, assessing risk for genetic disease, and providing support to those who are encountering a genetic disorder in themselves or family member. Formal training of genetic counselors began nearly 50 years, and since then, the field has been expanding and advancing. Defining the tenets and practice of the genetic counseling profession has also similarly changed over time; however, the core guiding principles of the profession have remained rooted in the concept of patient autonomy and client-centered care. Competency in the field is achieved by successfully graduating from an accredited master's-level training program in which the curriculum is based on standards set forth by the Accreditation Council of Genetic Counseling. Curricula are developed so that trainees are exposed to didactic work, hands-on clinical fieldwork, and research so that at the end of one's training they have become competent in The Practice Based Competencies that have been established for the profession. Upon graduation, genetic counselors find themselves working in a number of professional settings and subspecialties in genetics. As the underlying genetic cause of disease has become clearer, the areas in which genetic counselors practice have expanded and allows for diverse clinical practice. The profession has, and will, continue to adapt along with the advances in molecular genetics.

Emerging Ethical Challenges in Critical Care for the 21st Century: A Case-Based Discussion.

Ethical challenges for doctors and other health care professionals have existed since the practice of medicine began. Many of the oldest challenges live on to this day, such as who has more authority to make key decisions (autonomy vs. paternalism) and what are the boundaries of life at the beginning and at the end. Two powerful driving forces are new technologies and an ever-changing culture and society. The practice of medicine in intensive care units (ICUs) has been the source of many ethical challenges. Once firmly fixed concepts, such as death or "brain death" are now coming under increasing debate. In other areas, the concept of patient autonomy has been used to request life-prolonging therapies, once thought "futile." New technologies for procreation have necessitated new ethical challenges as well. In this paper, we will use a series of cases, based on experiences from our hospital ethics committee, that occurred over the course of several years and illustrate ethical challenges which are either new to us or not new but growing in frequency due to technological or societal changes. Each one of these topics is complex and worthy of its own large review but for this overview, we will briefly discuss the key points of each dilemma.

Dying for Advice: Code Status Discussions between Resident Physicians and Patients with Advanced Cancer--A National Survey.

Patients with treatment-resistant advanced cancer rarely benefit from cardiopulmonary resuscitation (CPR) but infrequently discuss end-of-life care with physicians until hospitalized. Admitting resident physicians may conduct initial code status discussions, but may elicit patients' preferences without providing necessary guidance. We surveyed residents' approach to code status discussions to identify barriers hindering informed decision making. We developed an online case-based survey and enrolled subjects via e-mail requests to program directors. U.S. internal medicine residents (n=358; response rate 22.0%) from 19 programs participated. We measured respondents' likelihood of discussing prognosis and benefit of CPR, likelihood of offering code status recommendations, preference for discussing code status independent of attending physicians, and satisfaction with end-of-life discussions. Nearly all residents felt CPR would be unhelpful. Yet fewer than half (46.7%) were likely to discuss an estimate of prognosis and the value of CPR with the patient. Only 30% were likely to offer a recommendation on CPR. A majority (69%) of residents who were unwilling to offer a recommendation stated that deference to patient autonomy prevented them from providing guidance. Residents preferred to discuss code status independent of attendings, primarily due to a sense of responsibility. Ultimately, only a minority was satisfied with end-of-life discussions. U.S. internal medicine resident physicians are unlikely to discuss prognosis or offer recommendations on CPR in treatment-refractory cancer principally because of a conflict with their concept of patient autonomy. Given the futility associated with CPR in this setting, these data define an unmet need in training and practice.

Dying for advice: Code-status discussions between resident physicians and patients with advanced cancer—A national survey.

83 Background: Patients with treatment-resistant advanced cancer rarely benefit from cardiopulmonary resuscitation (CPR) but infrequently discuss end-of-life care with a physician until hospitalized for deterioration. Admitting resident physicians may therefore conduct initial code-status discussions, but may elicit patients’ preferences without providing necessary guidance. Methods: We distributed a case-based survey to all United States internal medicine residency program directors, of whom 19 enrolled and forwarded the survey to their residents. 358 residents (response rate 22.0%) completed the survey. Results: Faced with a hypothetical case of an inpatient with treatment-refractory advanced cancer, nearly all residents felt CPR would not be helpful. Yet, fewer than half (46.7%) of residents were likely to discuss an estimate of prognosis and the value of CPR with the patient. Only 30% were likely to offer a specific recommendation on CPR. A majority (69%) of residents who were unwilling to make a recommendation stated that patients should make their decisions independently. Most residents report that a sense of responsibility is the primary reason to discuss code status independent of attending physicians, and that deference to patient autonomy prevented them from sharing knowledge of outcomes or offering guidance. Ultimately, a minority stated they were satisfied with end-of-life discussions. Conclusions: Internal medicine resident physicians in the United States are unlikely to share the poor prognosis or offer specific recommendations on CPR in treatment-refractory cancer principally because of a conflict with their concept of patient autonomy. Given the futility associated with CPR in this setting, these data define a major unmet need in training and practice.

Genomic Test Validation for Incidental Findings

In March of 2013, the American College of Medical Genetics and Genomics (ACMG) issued recommendations for the reporting of incidental findings produced by clinical exome and genome sequencing (1, 2). This guideline on incidental findings has been controversial, because the recommendations are a departure from previous ethical concepts of patient autonomy and the reporting of adult-onset disease in children (3–5). One aspect of the incidental-findings guideline that has not been discussed is the lack of required analytical validation for the reporting of a subset of pathogenic variants known to cause severe disease. Analytical validation of any clinical test is critical before its implementation. In the case of genetic testing, clinical laboratories should neither interpret nor report sequence changes that have not been previously validated. More importantly, test results that do not meet the minimum requirements of analytical performance should not be used for clinical decision-making. The ethical concerns raised by the general clinical community in response to the incidental-findings guideline are justified. The clinical laboratory community must specifically consider the ethical and regulatory implications of returning life-changing results from tests that have not been analytically validated or have not met the minimal quality standards established by the laboratory. The incidental-findings guideline was based on a working group appointed by the ACMG. The guideline is for clinical exome/genome laboratories to report a limited number of pathogenic DNA variants; there are 57 genes in the current guideline. The criteria on which the selection of genes was based include only “unequivocally pathogenic mutations in genes where pathogenic variants lead to disease with very high probability and …

The Confucian bioethics of surrogate decision making: Its communitarian roots

The family is the exemplar community of Chinese society. This essay explores how Chinese communitarian norms, expressed in thick commitments to the authority and autonomy of the family, are central to contemporary Chinese bioethics. In particular, it focuses on the issue of surrogate decision making to illustrate the Confucian family-grounded communitarian bioethics. The essay first describes the way in which the family, in Chinese bioethics, functions as a whole to provide consent for significant medical and surgical interventions when a patient has lost decision-making capacity. It is argued that the practice of not having an established order for surrogate decision makers (e.g., spouse, children, and then parents), as it is done in the United States, reflects the acknowledgment that the family as a social reality cannot be reduced to a stereotype of the appropriate order of default decision makers. This description of the family as being in authority to make surrogate decisions for an incompetent family member is enriched by an elaboration of the differences among the concepts of patient autonomy, family autonomy, and moral autonomy. The Chinese model, as well as the Confucian communitarian life of families, engages a family autonomy that is supported by a Confucian understanding of moral autonomy, rather than individual autonomy. Finally, the issue of possible conflicts between patient and family interests in relation to a patient's past wishes in the Chinese model is addressed in light of the role of the physician.

Truth-telling in cancer: Examining the cultural incompatibility argument in Turkey

This article aims to examine critically the 'cultural incompatibility' argument, which asserts that disclosure of cancer-related information to patients is incompatible with Turkey's cultural context. For this purpose, a brief overview of the approach to truth-telling in Turkey will first be provided, followed by the claims of two different Turkish authors on the issue and a critical analysis of their approach. It will be contended that this argument has actually been formulated with paternalistic concerns and it may be playing an important role in shaping the approach of Turkish health care professionals to the issue. The article will then examine, in the light of study findings and case reports from Turkey, the concept of patient autonomy as it applies to truth-telling issues. It will be concluded that truth-telling can be compatible with Turkey's cultural context, provided that health care professionals place more emphasis on good communication with their patients.

Informed consent and the rise of autonomy

Although the need for informed consent to medical treatment should be familiar to health-care professionals, the detail regarding what needs to be disclosed to the patient is less well known and even unclear. This article describes the legal requirements for informed consent, and briefly charts the development of the law over the past 25 years. It highlights the fact that the law has changed considerably, and demonstrates that this judicial activism has been as a result of an increasing prioritization of the concept of patient autonomy. It also shows that, on occasion, the courts are prepared to modify the law in order to protect what they see as the underlying principles behind it.

Elderly patients also have rights

Background:Sharing information with relatives of elderly patients in primary care and in hospital has to fit into the complex set of obligations, justifications and pressures concerning the provision of information,...

Women's Autonomy and the Evaluation of the Information Available on the Internet on Hormone Therapy After Menopause

This study was designed to examine the information in Spanish, provided by different Web sites, related to hormone therapy and climacteric symptoms. Web sites evaluated included those belonging to government and scientific institutions and to a miscellaneous group. In Web sites in Spanish, there was more extensive information on the benefits of hormone therapy than there were on other items. The Web sites of governmental institutions provided significantly more information on the risks (P < .01) and benefits (P = .02) of hormone therapy than did the other sites. Governmental institutions from the United States, unlike those from Spain, did not make recommendations regarding when hormone therapy should be considered and instead emphasized the woman's decision. The variability of information in Spanish on hormone therapy and postmenopausal symptoms presented on the Internet is related to the organization responsible for the Web site. Besides, cultural differences in the concept of patient autonomy could partly explain the differences in emphasis made on women's role in the decision-making process.

AUTONOMÍA DEL PACIENTE: LOS TESTIGOS DE JEHOVÁ Y LA ELECCIÓN DE ALTERNATIVAS A LA TRANSFUSIÓN

SUMMARY Today the medical, legal, bioethical, and pharmacological means exist to permit patients to choose from among wide and varied options for their medical care. Jehovah’s Witnesses appreciate the hard work of physicians who have met the challenge of providing safe and effective treatment while respecting their autonomous rights. This includes the many obstetricians and gynecologists who have employed safe and effective transfusion-alternative strategies. This article provides an overview of the position of Jehovah’s Witnesses with respect to blood transfusion and discusses the bioethical and legal principles that support their decision to choose transfusion alternatives. Continued cooperation can only serve to advance the concepts of patient autonomy, informed consent, and bodily self-determination.

Futility

Medical staff frequently have to make decisions about continuation or instigation of treatment in situations where there is doubt as to the benefit for a patient. A prime example being the decision not to attempt resuscitation. The concept of futility is often advanced as a justification for withdrawal or non-intervention and the term futile † † Incapable of producing any result; useless, ineffectual, and vain. appears in all the UK guidelines for withdrawal of treatment. The concept of futility ‡ ‡ The quality of being futile; want of weight or importance; ineffectiveness, uselessness. seems appealing as a simple and verifiable concept that helps doctors to make difficult decisions. Ethics or moral philosophy seeks to tell us what we ought to do under certain sets of circumstances. This review explores the meaning of futility from an ethical perspective and assesses its relevance to the goals of medicine in general. As a tool for making clinical decisions it seems to be a short cut, which avoids balancing of the benefits and harms of specific treatments and ignores the fundamental issue of the goals of medicine. There is a lack of coherence in descriptions of futility. It has a pejorative ring to it and it can conflict with the concept of patient autonomy. Seemingly objective analysis suggests that it can be highly subjective. These criticisms suggest that whilst futility exists it is of little use when used alone to consider how patients ought to be treated.

Futility

Medical staff frequently have to make decisions about continuation or instigation of treatment in situations where there is doubt as to the benefit for a patient. A prime example being the decision not to attempt resuscitation. The concept of futility is often advanced as a justification for withdrawal or non-intervention and the term futile † † Incapable of producing any result; useless, ineffectual, and vain. appears in all the UK guidelines for withdrawal of treatment. The concept of futility ‡ ‡ The quality of being futile; want of weight or importance; ineffectiveness, uselessness. seems appealing as a simple and verifiable concept that helps doctors to make difficult decisions. Ethics or moral philosophy seeks to tell us what we ought to do under certain sets of circumstances. This review explores the meaning of futility from an ethical perspective and assesses its relevance to the goals of medicine in general. As a tool for making clinical decisions it seems to be a short cut, which avoids balancing of the benefits and harms of specific treatments and ignores the fundamental issue of the goals of medicine. There is a lack of coherence in descriptions of futility. It has a pejorative ring to it and it can conflict with the concept of patient autonomy. Seemingly objective analysis suggests that it can be highly subjective. These criticisms suggest that whilst futility exists it is of little use when used alone to consider how patients ought to be treated.

The medical practice of patient autonomy and cancer treatment refusals: a patients’ and physicians’ perspective

The idea that patients should take up an autonomous position in the decision-making process is generally appreciated. However, what patient autonomy means in the case of patients who refuse a recommended oncological treatment has not been investigated. This study aims to clarify how the concept of patient autonomy can be applied to patients who refuse a recommended oncological treatment. Focus questions are: (1) what is meant by patient autonomy, i.e. how is this autonomy conceptualised and (2) which factors influence patient autonomy. A qualitative study design with in-depth interviews was performed. The study sample included 30 cancer patients and 16 physicians. All patients had refused a recommended oncological treatment. Patient autonomy was revealed to be a comprehensive concept with elaborations on ‘making decisions’ and ‘defining life choices’ as sub-concepts of patient autonomy. In contrast to what is generally believed, decisions of patients to refuse an oncological treatment do not so much rely on the medical information about disease and treatment options, but are rather inspired by patients’ own experiences or those of close others. The medical information and the role of the physician do, however, influence patients’ experiences of being free and/or of having a choice. The results show that the extent of pressure physicians will exert to persuade the patient to be treated as recommended depends on the medical distinction between a curative and a non-curative treatment goal. It seems that there exists a shift in respecting patient autonomy, which depends on factors like treatment goal. Discussing the respect shift may serve to clarify underlying thoughts and principles in the decision-making process for both physicians and patients.

Truth telling and patient autonomy: the patient’s point of view

The concept of patient autonomy has been widely accepted as a basic ethical principle. The right of a patient to control his or her treatment has largely superceded the former paternalistic approach of physicians, and it has become increasingly apparent that most patients desire information about their illness and want to be involved in making medical decisions (1,2). Such patient participation has many benefits (3) and has been recognized as an important legal right (4).

Euthanasia: what is the nursing and medical role?

The recent announcement by the Dutch parliament that it has approved a law to make the Netherlands the first country to decriminalize euthanasia has implications for all of us. On the one hand there will be those who will warn of a slippery slope towards murder or genocide. On the other, as the concepts of patient autonomy and informed consent are more prominent than ever before, many will see this move by the Dutch as a way of strengthening patients' voices, enabling them to make up their own minds and determining decisions about their own health care.

The appearance of Kant's deontology in contemporary Kantianism: concepts of patient autonomy in bioethics.

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.

Informed refusal and patient autonomy: using reflection to examine how nursing knowledge and theory affect attitudes

Reflection is a medium increasingly being used in nursing to explore critical incidents, promote learning and integrate theory and practice. In this paper reflection is used to explore the influences of different types of nursing knowledge and theory upon reactions to informed refusal of treatment and the concept of patient autonomy. The paper contains consideration of the care of a Jehovah's Witness and her family who refused a badly-needed blood transfusion.