Background The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making. Methods Purposive, qualitative design based on individual, fact-to-face, semi-structured, in-depth (...) interviews. The participants were thirteen paediatric oncologists, 13 parents or primary carers, and six adolescents with incurable cancer. The participants were recruited from the paediatric oncology services of three national tertiary-care medical centres in Mexico City. Results The oncologists stated that they broach the subject of palliative management when they have determined that curative treatment has failed. Respect for autonomy was understood as the assent of the parent/adolescent to what the oncologist determined to be in the best interest of the adolescent. The oncologists thought that the adolescent should be involved in the decision-making. They also identified the ability to count on a palliative care clinic or service as an urgent need. For the parents, it was essential that the oncologist be truly interested in their adolescent child. The parents did not consider it necessary to inform the child about impending death. The adolescents stated that the honesty of their oncologists was important; however, several of them opted for a passive role in the decision-making process. Conclusion The findings of this study evidence that to achieve good medical practice in low-middle income countries, like Mexico, it is urgent to begin effective implementation of palliative care, together with appropriate training and continuing education in the ethics of clinical practice. (shrink)

There are marked differences between countries with regard to reimbursement decision-making, yet few studies have tried to understand this process and its consequences by a detailed analysis of the local context and decision-making structure. This article describes reimbursement decision-making and subsequent prescribing patterns of new pharmaceuticals by means of a case study on glitazones in treatment of type 2 diabetes mellitus patients in Denmark. The study shows that institutional arrangements, providing the context in which (...) evidence is used, are highly important for understanding the reimbursement decision-making process. In particular the Danish Medicines Agency (DMA) has shaped the decision to reimburse glitazones on the basis of physician-mediated requests of individual patients. Relatively few patients have been prescribed glitazones since their introduction in 2000, suggesting that individual reimbursement may be an effective instrument in controlling overall expenditure of selected pharmaceuticals, although in the case of glitazones this has likely been achieved at the expense of equality in access to the products. The discussion focuses on the generalizability of the findings to both other pharmaceuticals in the individual reimbursement scheme in Denmark, and to other countries that are trying to balance the need to control overall pharmaceutical care expenditure with the need to secure equality in access to new drugs with therapeutic added value. (shrink)

Se realiza un estudio de los principios básicos o tradicionales de la bioética y su influencia en la práctica de la limitación del esfuerzo terapéutico en las Unidades de Cuidados Intensivos, como condicionante que favorece su aplicación en los pacientes en estado terminal. Se aborda la necesidad de una bioética no importada de otros países, que se corresponda a las características de la realidad latinoamericana y a cada contexto sociocultural. El trabajo tiene como objetivo fundamental resaltar la importancia de estos (...) principios básicos en la discusión ético-clínica para la toma de decisiones, a partir de una bioética que se corresponda a la realidad de los sistemas imperantes. A study of basic or traditional principles of bioethics and its influence in the practice of the limits of the therapeutic effort in the intensive care units, as a requirement that favors its application in terminal ill patients was carried out. The need of having bioethics principles that match Latin-American reality and each sociocultural context, not imported ones from other countries, was stated. This paper main objective is to highlight the importance of these basic principles in ethic-clinic discussion for decision-making, taking as the starting point a bioethics that corresponds to the reality of the dominant system. (shrink)

Clinical judgment, also called clinical reasoning, clinical decision-making, and diagnostic-therapeutic decision-making, lies at the heart of clinical practice and thus medicine. In thepast, clinical judgment was considered the expert task of the physician. But the advent of computers in the 1940s and their use in medicine as of the late 1950s gradually changed this situation. In the 1960s, a new discipline emerged that has come to be termed medical computer science or medical informatics, including clinical (...) informatics. Clinical informatics is concerned with all aspects of the application of computing machinery in clinical research and practice. As one of its accomplishments in clinical practice, the physician’s capacity for clinical judgment is in the process of being turned over to computers. We are told that computers will be responsible for making diagnoses and treatment decisions in a not-too-distant future. This prospect, its historical, methodological and philosophical background, and its impact on health care will be discussed in the present Part VI which divides into these three chapters: 19 Medical Decision-Making 20 Clinical Decision Support Systems 21 Artificial Intelligence in Medicine? (shrink)

Therapeutic privilege is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but might (...) be inclined to refuse recommended treatments. In this paper, we explore the conceptual and practical challenges of this novel interpretation of TP. We propose that more emphasis should be placed on forms of shared and supported decision-making that foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being. The kind of privilege that doctors might need to invoke is one of time and supportive expertise to ensure a flexible, responsive approach calibrated to the individual patients’ needs. The provision of such service would extinguish the need for the novel TP proposed by the Singapore Court of Appeal. (shrink)

The medical decision-making process is currently in flux. Decisions are no longer made entirely at the physician's discretion: patients are becoming more and more involved in the process. There is a great deal of discussion about the ideal of ‘informed consent’, that is that diagnostic and therapeutic decisions should be made based on an interaction between physician and patient. This means that patients are informed about the advantages and disadvantages of a treatment as well as alternatives to (...) the treatment; then, based on this information they can decide whether or not they want to undergo the treatment. However, recent studies show that the realisation of the ideal of ‘shared decision-making’ faces a number of difficulties related to the fact that patients are not provided with complete and accurate information. Using the example of breast cancer screening, this article examines the question of whether, in light of these difficulties, the ideal of informed decision-making is only an illusion or whether concrete steps can be taken towards the realisation of this ideal. (shrink)

Background Decision making regarding the treatment of neonates with poor prognoses is difficult for healthcare staff working in the neonatal intensive care unit (NICU). This study aimed to investigate the attitudes of physicians and nurses about the value of life and ethical decision making when encountering neonates with poor prognosis in the NICU. Methods This cross-sectional study was conducted in five NICUs of five hospitals in Tehran city, Iran. The attitudes of 144 pediatricians, gynecologists and nurses (...) were assessed using the questionnaire of attitude toward the value of life and agreement on intensive care management based on three hypothetical case scenarios of neonates with poor prognosis. Data were analyzed using descriptive and inferential statistics via the SPSS software. Results The negative agreement on the no initiation of intensive care measures and the discontinuation of resuscitation in neonates with poor prognosis was more than the positive agreement. Also, various factors influenced the participants’ decision making for the provision of care to neonates. Regarding the case scenarios, the participants agreed on the provision of aggressive, conservative, and palliative care with various frequencies. This study confirms the importance of healthcare providers’ perspectives and their impacts on ethical decision making. The participants favored the value or sacredness of life and agreed on the use of all therapeutic measures for saving the lives of neonates with poor prognosis. Conclusion More studies are required to improve our understandings of factors influencing ethical decision making by healthcare providers when encountering neonates with poor prognosis in NICUs. (shrink)

This article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's energy and vigour contributed to the clinician's judgements about life expectancy and the continuation or termination of medical treatment. In this paper we will discuss the normative importance of vitality as a diagnostic cue and will argue that vitality, as a sign (...) perceived by doctors and nurses, has moral significance and represents a legitimate contribution to clinical decision-making in difficult cases where the child's life is at stake. We will argue that these clinical intuitions can be justified on a moral basis but only with certain qualifications that accounts for a certain objectivity and intersubjective reliability in the therapeutic judgements. (shrink)

Some patients who are dependent on extracorporeal membrane oxygenation (ECMO) are alert and retain capacity to participate in decision-making, including decisions regarding whether to continue life...

Now in its fourth edition, Rational Diagnosis and Treatment: Evidence-Based Clinical Decision - Making is a unique book to look at evidence-based medicine and the difficulty of applying evidence from group studies to individual patients._ The book analyses the successive stages of the decision process and deals with topics such as the examination of the patient,_the reliability of clinical data, the logic of diagnosis, the fallacies of uncontrolled therapeutic experience and the need for randomised clinical trials (...) and meta-analyses. It is the main theme of the book that, whenever possible, clinical decisions must be based on the evidence from clinical research, but the authors also explain the pitfalls of such research and the problems involved in applying evidence from groups of patients to the individual patient._ For this new edition, the sections on placebo and meta-analysis and on alternative medicine have been thoroughly updated, and there is more focus on insufficient reporting of harms of interventions. The sections on different research designs describe advantages and limitations, and the increased medicalisation and the effects of cancer screening on health people are noted. A section on academic freedom when clinicians collaborate with industry and ghost authors is added._ This essential reference work integrates the science and statistical approach of evidence-based medicine with the art and humanism of medical practice; distinguishing between data, sets of data, knowledge and wisdom, and their application. Such an intellectually challenging book is ideal for both medical students and doctors who require theoretical and practical clinical skills to help ensure that they apply theory in practice. (shrink)

There is very little literature on the actual decision-making frameworks used by general practitioners with respect to ethical issues and virtually none on the impact of personal experiences of illness on this. This study aimed to investigate what these frameworks might be and if and how they were altered by doctors’ own illness experience. Twenty general practitioners were recruited, 10 having had a previous serious medical illness and 10 having no such history. They participated in a semi-structured interview, (...) including case vignettes, recorded and analysed using qualitative thematic analysis. Being a patient themselves altered general practitioners’ decision-making by enhancing physician empathy, increasing ease at discussing difficult topics, having a greater willingness to support patient choice and a wider ability to provide a greater diversity of therapeutic strategies, with the role of empathy being the most noticeable difference between the groups. Doctors who had not had a severe personal illnes... (shrink)

Patient decision-making autonomy refers to the patients’ ability to freely exert their own choices and make their own decisions, given sufficient resources and information to do so. In pain medicine, it is accepted that appropriate beneficial management aims to propose an individualized treatment plan shared with the patients, as agents, to help them live as autonomously as possible with their pain. However, are patients in chronic pain centers sufficiently autonomous to participate in the therapeutic decisions that concern (...) them? As this question still remains unanswered, a pilot study was set up to that aim. Over a 2-month period, first-time patients within a tertiary multidisciplinary pain center underwent a systematic evaluation of their autonomy using the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), considered the benchmark tool for measuring a patient’s ability to consent to treatment. Demographic data and pain characteristics of the patients were collected and their respective attending pain physicians were asked to clinically assess their patients’ degree of autonomy. Another physician, who had not participated in the initial patient evaluation, subsequently administered the MacCAT-T questionnaire to the same patients. Twenty-seven patients were included during the study period (21 women and 6 men), with an average age of 50 years. The average duration of pain was 8 years. Based on their clinical experience, the 4 different pain physicians in charge of these patients considered that out of 25 assessed patients, 22 of them (89%) had full decision-making capacity, with no deficit in autonomy. According to the MacCAT-T results, only 13 of these 25 patients (48%) had no deficit, while 7 (26%) had a major deficit in autonomy. The only patient characteristic that appeared to be related to autonomy was pain type, specifically nociplastic pain. The average time taken to complete the test was 20 min, and patients were very satisfied with the interview. Results from the present pilot study suggest that patients suffering from chronic pain do not appear to be entirely autonomous in their decision to consent to the proposed treatment plan according to the MacCAT-T questionnaire, and physicians seem to find it difficult to properly assess this competence in a clinical setting. Further studies with larger samples are needed to better evaluate this concept to improve the complex management of these patients. (shrink)

BackgroundThe assessment of patients’ decision-making capacity is ubiquitous in contemporary healthcare. This paper examines the ethics of undisclosed probing of capacity by psychiatrists. The discussion will refer to the law in England and Wales, though the highlighted issues are likely to be relevant in similar jurisdictions.Main textDecision-making capacity is a private attribute, and patients may not necessarily be aware that one of their personal abilities is being explored. Routine exploration of capacity has not historically been a part (...) of psychiatric examination, but it is now difficult to avoid during psychiatric interview.Ethical practice and shared decision-making require patients to be aware that their decision-making may be evaluated by the doctor at some point, and the potential implications of an objective professional conclusion of incapacity. Case law directs that patients should be informed about any assessment of their decision-making ability, though the extent to which this has translated into practice is unclear. However, explanation about the assessment may cause a patient to react negatively, which may impede therapeutic engagement and constitute an ethical dilemma. It is argued that in the absence of systemic measures, professionals should retain the discretion to decide whether a particular patient should be informed about the impending probe into their decision-making ability, or not. In the latter instance, concealment of information about the assessment or its purpose should be subject to the caveats and safeguards associated with any recourse to therapeutic exception.ConclusionThe necessity to mandatorily inform patients about assessment of their capacity introduces a novel ethical dilemma for psychiatrists. The negotiation of this dilemma should not be the prerogative of the clinician, and requires systemic initiatives to ensure universal awareness of patients about the possibility of their capacity being assessed during their journeys through healthcare systems. (shrink)

Institutional Review Board decisions hinge on the availability and interpretation of information. This is demonstrated by the following well-known historical example. In 2001, 24-year-old Ellen Roche died from respiratory distress and organ failure as a result of her participation in a study at Johns Hopkins Asthma and Allergy Center. The non-therapeutic physiological study, “Mechanisms of Deep Inspiration-Induced Airway Relaxation,” was designed to examine airway hyperresponsiveness in healthy individuals in order to better understand the pathophysiology of asthma. Participants inhaled hexamethonium, (...) a chemical ganglionic blocker that was not FDA-approved for use as specified in the experimental protocol. Risks of inhaling hexamethonium, including lung damage, had been reported in the 1950s and ‘60s. An investigation conducted after Roche's death determined that the study's principal investigator had failed to adequately search the medical literature; the protocol submitted for IRB review cited articles indexed in online literature databases that went back only as far as the 1970s. (shrink)

The text is extensively referenced, but practical in its approach, giving real life examples and cases based on therapeutic practice.

The degree of autonomy present in the choices made by individuals with an addiction, notably in the context of research, is unclear and debated. Some have argued that addiction, as it is commonly understood, prevents people from having sufficient decision-making capacity or self-control to engage in choices involving substances to which they have an addiction. Others have criticized this position for being too radical and have counter-argued in favour of the full autonomy of people with an addiction. Aligning (...) ourselves with middle-ground positions between these two extremes, we flesh out an account of voluntary action that makes room for finer-grained analyses than the proposed all-or-nothing stances, which rely on a rather static metaphysical understanding of the nature of the voluntariness of action. In contrast, a dynamic concept of voluntary action better accounts for varying levels of voluntariness of the person with an addiction which takes into consideration internal and external determinants of choice. Accordingly, like other components of autonomous choices such as level of information, voluntariness can fluctuate. Therefore, there are important implications for research and clinical ethics in matters of consent, recruitment, and therapeutic approaches. Overall, our proposal is inspired by a pragmatist understanding of voluntary action, notably with respect to how voluntariness is both informed by actions and experiences that shape one's view of the world. (shrink)

“4E” cognitive science has demonstrated that embodied coupling offers powerful resources for reasoning. Despite a surge of studies, little empirical attention is paid to discussing the precise scope of these resources and their possible complementariness with traditional knowledge-based inference. We use decision-making in Shiatsu practice – a bodywork method that employs hands-on interaction with a client – to showcase how the two types of cognitive resources can mesh and offer alternative paths to a task: “Local” resources such as (...) embodied presence, empathy, attunement, as well as skilled perception-action coupling are not only central for implementing a successful therapeutic intervention. The immediate coupling with a client also offers basic means of deciding about fitting and meaningful interventions. Yet, when comprehensive intervention strategies are at stake, Shiatsu decision making must be complemented through “non-local” resources, notably inferences rooted in anatomy/physiology knowledge, categories, heuristics, and mental models. To draw out implications for “4E” cognitive science, we argue that “local” embodied coupling and “non-local” conceptual inferences can functionally complement, inform, and scaffold each other in a dialectic process. (shrink)

In this chapter, it is argued that some animal shelters fulfill the conditions that make triage protocols necessary, namely, the operation with limited financial budgets, space, medical resources, and staff. It is suggested that requirements presented for triage in humans can be fruitfully applied to the context of animal shelters. The focus lies on the criteria of maximizing benefit, justice, medical criteria, life-span considerations, fair decision-making, patient will, re-evaluation of triage decisions and changes in the therapeutic goal, (...) and burden of triage and staff support. The establishment of triage protocols for shelters will make the decision-making process less arbitrary, fairer, and more transparent. Furthermore, it is argued that, in situations where disagreement persist among shelter staff, an external Ethics Board could be called in to help analyze and potentially resolve some of the remaining ethical issues. (shrink)

How do our brains make choices? How do factors such as Alzheimer's or depression impair decision-making? Presenting the latest research on 'hot' and 'cold' decision-making, Barbara Sahakian and Jamie Nicole LaBuzetta look at the therapeutic smart drugs now available, and raise concerns about their unregulated use to enhance mental performance.

Moral values in healthcare range widely between interest groups and are principally subjective. Disagreements diminish dialogue and marginalize alternative viewpoints. Extremely premature births exemplify how discord becomes unproductive when conflicts of interest, cultural misunderstanding, constrained evidence review, and peculiar hierarchy compete without the balance of objective standards of reason. Accepting uncertainty, distributing risk fairly, and humbly acknowledging therapeutic limits are honorable traits, not relativism, and especially crucial in our world of constrained resources. We think dialogics engender a mutual understanding (...) that: i) transitions beliefs beyond bias, ii) moves conflict toward pragmatism (i.e., the truth of any position is verified by subsequent experience), and iii) recognizes value pluralism (i.e., human values are irreducibly diverse, conflicting, and ultimately incommensurable). This article provides a clear and useful Point-Counterpoint of extreme prematurity controversies, an objective neurodevelopmental outcomes table, and a dialogics exemplar to cultivate shared empathetic comprehension, not to create sides from which to choose. It is our goal to bridge the understanding gap within and between physicians and bioethicists. Dialogics accept competing relational interests as human nature, recognizing that ultimate solutions satisfactory to all are illusory, because every choice has downside. Nurturing a collective consciousness via dialogics and pragmatism is congenial to integrating objective evidence review and subjective moral-cultural sentiments, and is that rarest of ethical constructs, a means and an end. (shrink)

Documented ethical violations and empirical research have demonstrated that, despite professional standards and formal training in ethical principles, some psychotherapists engage in unethical behaviors that compromise the welfare of clients. It appears that competing values and interests that emerge in the therapeutic endeavor can interfere with therapists' considerations of ethical standards and their willingness to act ethically. Expanding current models of ethical decision making, this article offers a hermeneutic model that recognizes that in addition to moral reasoning, (...) the context of the therapeutic relationship and the therapist's subjective responses are fundamental considerations in the interpretation and application of ethical interventions. Implications for understanding and training of ethics in psychotherapy in this broader context are explored. (shrink)

Introduction As deep brain stimulation (DBS) has shifted to being used earlier during Parkinson’s disease (PD), data is lacking regarding patient specific attitudes, preferences, and factors which may influence the timing of and decision to proceed with DBS in the United States. This study aims to identify and compare attitudes and preferences regarding the earlier use of DBS in Parkinson’s patients who have and have not undergone DBS. Methods We developed an online survey concerning attitudes about DBS and its (...) timing in PD. The survey was distributed nationally in the United States via the Michael J. Fox Foundation Trial Finder, the American Parkinson Disease Association flyers, and as a link on the Parkinson Alliance website. Differences in responses between PD DBS and non-DBS patients were assessed. Results A total of 445 patients with PD met eligibility criteria for the survey of which 160 self-identified as having undergone DBS. Fifty-five percent (n = 124) of non-DBS patients believed that DBS for PD should only be considered after all medication options have been tried. Patients favoring early DBS had fewer concerns regarding the surgery than those favoring later DBS. Conclusion Our findings highlight a variety of important considerations and concerns patients have regarding DBS and its timing. These viewpoints are important aspects of shared decision-making, as they help to identify patients’ preferences, values, and goals, which should enable providers to better navigate, with their patients, the decision path for therapeutic options to consider. (shrink)

In the course of the long 18th century, medical theory and theories underwent profound changes. These in turn reflected discontinuities and often conflicting assumptions and premises, engendering divergent concepts of physiology and pathology. However, most theoretical considerations were only very inconsistently and partially reflected in therapeutic practice, which continued to be governed by experience with traditional and known medicinals and by patient expectations regarding provider practices. Additional factors in therapeutic decision making were economic considerations and preferences (...) for particular therapies in certain social and religious networks. The present volume deals with some aspects of this complex relationship between medical theory and therapeutic practice, using a transatlantic perspective. Individual essays reflect the current state of historical research in Germany, the US and Great Britain. (shrink)

Whether treatment decision-making capacity can be meaningfully applied to patients with a diagnosis of “personality disorder” is examined. Patients presenting to a psychiatric emergency clinic with threats of self-harm are considered, two having been assessed and reviewed in detail. It was found that capacity can be meaningfully assessed in such patients, although the process is more complex than in patients with diagnoses of a more conventional kind. The process of assessing capacity in such patients is very time-consuming and (...) may become, in itself, a therapeutic intervention. (shrink)

Physicians make some medical decisions without disclosure to their patients. Nondisclosure is possible because these are silent decisions to refrain from screening, diagnostic or therapeutic interventions. Nondisclosure is ethically permissible when the usual presumption that the patient should be involved in decisions is defeated by considerations of clinical utility or patient emotional and physical well-being. Some silent decisions - not all - are ethically justified by this standard. Justified silent decisions are typically dependent on the physician's professional judgment, experience (...) and knowledge, and are not likely to be changed by patient preferences. We condemn the inappropriate exclusion of the patient from the decision-making process. However, if a test or treatment is unlikely to yield a net benefit, disclosure and discussion are at times unnecessary. Appropriate silent decisions are ethically justified by such considerations as patient benefit or economy of time. (shrink)

The current legal status and medical ethics of routine or religious penile circumcision of minors is a matter of ongoing controversy in many countries. We focus on the United Kingdom as an illustrative example, giving a detailed analysis of the most recent British Medical Association guidance from 2019. We argue that the guidance paints a confused and conflicting portrait of the law and ethics of the procedure in the UK context, reflecting deeper, unresolved moral and legal tensions surrounding child genital (...) cutting practices more generally. Of particular note is a lack of clarity around how to apply the “best interests” standard—ordinarily associated with time-sensitive proxy decision making regarding therapeutic options for a medically unwell patient—to a parental request for a medically unnecessary surgery to be carried out on the genitalia of a healthy child. Challenges arise in measuring and assigning weights to intended sociocultural or religious/spiritual benefits, and even to health-related prophylactic benefits, and in balancing these against potential physical, functional, and psychosexual risks or harms. Also of concern are apparently inconsistent safeguarding standards being applied to children based on their birth sex categorization or gender of rearing. We identify and discuss recent trends in British and international medical ethics and law, finding gradual movement toward a more unified standard for evaluating the permissibility of surgically modifying healthy children's genitals before they can meaningfully participate in the decision. (shrink)

There is significant potential for machine learning (ML) models and systems to enhance prognostic, diagnostic, and therapeutic decision-making in the healthcare context. When used in clinical setti...

Background: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses’ attitudes and involvement in end-of-life decisions are available. Research question/aim: To investigate neonatal nurses’ attitudes and involvement in end-of-life decisions and the relation to their socio-demographic and work-related background data. Research design: A survey was carried out in 28 neonatal intensive care units between September 2018 and January 2019. A structured questionnaire was distributed by post. Participants and research (...) context: The questionnaire was answered anonymously by 312 nurses (response rate, 71.1%) and returned to the investigators. Ethical considerations: The study was approved by the Bioethics and Research Committee of Aretaieio Hospital in accordance with the Helsinki Declaration. Findings: Nurses more often reported involvement in various end-of-life decisions, such as continuation of treatment without adding further therapeutic interventions for terminally ill neonates, while less reported were mechanical ventilation withdrawal and drug administration to end life. Nurses with a high attitude score, reflecting a more quality-of-life approach, were more likely to be involved in setting limits to intensive care. α low score was consistent with life preservation. Nurses’ religiousness ( p = 0.097), parenthood ( p = 0.093), involvement in daily practice ( p = 0.03), and position on the existing legal framework ( p < 0.002) influenced their attitude score. Discussion: The likelihood of nurses to support interventions in neonates with poor prognosis in neonatal intensive care units was related to their attitudes. After adjusting for potential confounders, the most important predictors for nurses’ attitudes were parenthood, involvement in daily practice, and position supporting current legislation reform. Conclusion: Variability in involvement in end-of-life decisions among nurses exists on a national level. (shrink)

Introduction: Despite being considered as a contravention under some countries’ legislation, the therapeutic use of Cannabis sativa has been growing in Brazil, due to the promising results observed in many pathologies. Such a scenario has fostered the need to deepen discussions on the subject and possibly revise legislation governing the substance use and access. Objectives: Identify the types of stigma related to the therapeutic use of Cannabis and describe the strategies people use to overcome stigma. Methods: This integrative (...) review was carried out in the databases PubMed, Scopus, CINAHL, MEDLINE, PsycINFO, Web of Science, and Cochrane Library, with 565 articles being retrieved. Triads’ cross-check were done, first maintaining the “cannabis” and “therapeutic use” pair, added by “stigma,” “bioethics,” “ethics,” “social consequences,” and “legal consequences.” The final selection resulted in six articles. Ethical Consideration: However, the ethical issues that pervade and regulate decisions on this subject must be considered. Results: Different dimensions and types of stigma related to the therapeutic use of Cannabis have been identified. The bioethical principle of autonomy was an expression of citizenship and human rights, mitigating internal conflicts related to self-stigma and the effects of external stigma on the person’s life. Conclusion: It was possible to identify the types of stigma related to the therapeutic use of Cannabis is an internal dimension represented (self-stigma) and an external dimension, represented (social and structural stigmas) and to identify strategies adopted to face this stigma: skills training group for users, elaboration of laws and specific programs to clarify the therapeutic use of Cannabis with a greater social scope, and support for family members. Thus, contributing to the building of people’s autonomy in a broader context of decision-making autonomy and executive autonomy will provide the development of people’s capacity to perform complex tasks of self-management and, consequently, to continue promoting and preserving their decision-making process and their capacity to plan and perform tasks associated with managing their lives and their treatments. (shrink)

People are using innovative internet of things technologies to gain individualised management of their type 1 diabetes. The #WeAreNotWaiting movement supports them to build their own hybrid closed loop systems and access their real time blood sugar data via any web connected device. A small number of parents in Australia use such DIY looping systems to manage their child’s type 1 diabetes, but these systems have not been approved by the Therapeutic Goods Administration in Australia, creating ethical dilemmas for (...) clinicians about how to respond to the use of medical devices that are not registered on the Australian Register of Therapeutic Goods. This article considers whether the use of DIY looping is in the best interests of the child and, if not, whether intervention in parental decision making is justified to prevent harm to the child. It addresses the ongoing duty of healthcare professionals to provide care to children who are ‘looping.’ Reference is made to findings from a study, Personalised Closed Loop Systems for Childhood Diabetes, to illustrate stakeholders’ perceptions of benefits and harms of DIY looping systems. I conclude that the decision of parents to use DIY looping technology could be considered to be in a child’s best interests, broadly defined, and falls within the Zone of Parental Discretion, however healthcare practitioners who support parents may have professional concerns in doing so. (shrink)

Physicians make some medical decisions without disclosure to their patients. Nondisclosure is possible because these are silent decisions to refrain from screening, diagnostic or therapeutic interventions. Nondisclosure is ethically permissible when the usual presumption that the patient should be involved in decisions is defeated by considerations of clinical utility or patient emotional and physical well-being. Some silent decisions—not all—are ethically justified by this standard. Justified silent decisions are typically dependent on the physician's professional judgment, experience and knowledge, and are (...) not likely to be changed by patient preferences. We condemn the inappropriate exclusion of the patient from the decision-making process. However, if a test or treatment is unlikely to yield a net benefit, disclosure and discussion are at times unnecessary. Appropriate silent decisions are ethically justified by such considerations as patient benefit or economy of time. (shrink)

Background: Nurses who practice limitation of therapeutic effort become fully involved in emotionally charged situations, which can affect them significantly on an emotional and professional level. Objectives: To describe the experience of intensive care nurses practicing limitation of therapeutic effort. Method: A qualitative, phenomenological study was performed within the intensive care units of the Madrid Hospitals Health Service. Purposeful and snowball sampling methods were used, and data collection methods included semi-structured and unstructured interviews, researcher field notes, and participants’ (...) personal letters. The Giorgi proposal for data analysis was used on the data. Ethical considerations: This study was approved by the Ethical Research Committee of the relevant hospital and by the Ethics Committee of the Rey Juan Carlos University and was guided by the ethical principles of voluntary enrollment, anonymity, privacy, and confidentiality. Results: In total, 22 nurses participated and 3 themes were identified regarding the nurses’ experiences when faced with limitation of therapeutic effort: (a) experiencing relief, (b) accepting the medical decision, and (c) implementing limitation of therapeutic effort. Conclusion: Nurses felt that, although they were burdened with the responsibility of implementing limitation of therapeutic effort, they were being left out of the final decision-making process regarding the same. (shrink)

ArgumentThis study contributes to the discussion on the development of eugenics in Central-Eastern Europe by tracing the way that eugenic ideas entered into medical decision-making in Hungary. Through a case study that reviews the professional argumentation of the gynecological management of tuberculosis pregnancies, this paper shows that the subordination of individual reproductive rights to state interests was influenced by the ideas of eugenics, which had begun to enter into the professional public health discourse. A eugenically informed morality was (...) envisioned, to guide decision-making in the interest of the Hungarian “race.” This biopolitically important morality can be viewed as an early influence on the formulation of biological citizenship. Leading figures were divided on how to ensure such morality: some scholars argued that education is the key, others thought that the state, and state actors, should act radically in the interest of the population and decide on behalf of the individual. Radical methods, such as the termination of pregnancies and sterilization of women, were among the practices of gynecologists. Although abortion and sterilization were not widespread and never became official therapeutic solutions for tuberculosis pregnancies, they were nonetheless part of a discourse that preceded the eugenic institutions of the interwar years. (shrink)

Unrealistic therapeutic beliefs are very common—the majority of patient-subjects (up to 94%) enrol in phase 1 trials seeking and expecting significant medical benefit, even though the likelihood of such benefit has historically proven very low. The high prevalence of therapeutic misestimation and unrealistic optimism in particular has stimulated debate about whether unrealistic therapeutic beliefs in early-phase clinical trials preclude adequate informed consent. We seek here to help resolve this controversy by showing that a crucial determination of when (...) such therapeutic beliefs are ethically problematic turns on whether they are causally linked and instrumental to the motivation to participate in the trial. Thus, in practice, it is ethically incumbent on researchers to determine which understanding and beliefs lead to the participant’s primary motivation for enrolling, not to simply assess understanding, beliefs and motivations independently. We further contend that assessing patient-subjects’ appreciation as a component of informed consent—it is already an established component of decision-making capacity assessments—can help elucidate the link between understanding-beliefs and motivation; appreciation refers to an individual’s understanding of the personal significance of both the medical facts and the experience of trial participation. Therefore, we recommend that: (1) in addition to the usual question, ‘Why do you want to participate in this trial?’, all potential participants should be asked the question: ‘What are you giving up by participating in this trial?’ and (2) researchers should consider the settings in which it may be possible and practical to obtain ‘two-point consent’. (shrink)

The “therapeutic misconception” describes a process whereby research volunteers misinterpret the intentions of researchers and the nature of clinical research. This misinterpretation leads research volunteers to falsely attribute a therapeutic potential to clinical research, and compromises informed decision making, therefore compromising the ethical integrity of a clinical experiment. We review recent evidence from the neurobiology of social cognition to provide a novel framework for thinking about the therapeutic misconception. We argue that the neurobiology of social (...) cognition should be considered in any ethical analysis of how people make decisions about participating in clinical trials. The neurobiology of social cognition also suggests how the complicated dynamics of the doctor-patient relationship may unavoidably interfere with the process of obtaining informed consent. Following this argument we suggest new ways to prevent or at least mitigate the therapeutic misconception. (shrink)

Therapeutic misconception involves the failure of subjects either to understand or to incorporate into their own expectations the distinctions in nature and purpose of personally responsive therapeutic care, and the generic relationship between subject and investigator which is constrained by research protocols. Researchers cannot disregard this phenomenon if they are to ensure that subjects engage in research on the basis of genuine informed consent. However, our presumption of patient autonomy must be sustained unless we have compelling evidence of (...) serious misunderstanding. This article argues that the mere expression of aspects of therapeutic misconception should not necessarily displace the presumption of subject autonomy or undermine ethical inclusion in research for at least three reasons. First, some interpretations of the empirical data do not suggest misunderstanding. Second, assessment of misestimation and optimism are delicate and value-laden, and turn quickly from questions of autonomy to questions of judgment. Third, incomplete understanding may yet be sufficient to allow a subject to engage in a substantially autonomous decision-making process. Our point is not to dismiss the possibility of genuine therapeutic misconception, but to question its frequency and fatality to the consent process. (shrink)

Introduction Intensive care units are contexts in which, due to the remarkable existence of particularly technological resources, interventions are promoted to extend the life of people who experience highly complex health situations. This ability can lead to a culture of death denial where the possibility of implementing futile care and treatment cannot be excluded. Objective To describe nurses’ perceptions of adult intensive care units regarding the therapeutic futility of interventions implemented to persons in critical health conditions. Method Review of (...) the literature following the Scoping Review protocol of the Joanna Briggs Institute. The Population, Concept, and Context mnemonic was used to elaborate the research question and the research was performed using the EBSCOHost search engine in the CINAHL Complete databases, MEDLINE Complete, Cochrane Central Register of Controlled Trials, and Cochrane Database of Systematic Reviews to identify studies published between 1990 and 2019. Seven studies were selected. Results Nurses consider that therapeutic futility, a current problem in adult intensive care units, may have a negative impact on persons in critical health conditions and that contributes directly to resource expenditure and moral conflicts and consequently leads to emotional exhaustion. Conclusion Due to the complexity of this concept, knowing and understanding people’s and families’ perceptions is crucial to the decision-making process, for which reason nurses can play a key role in managing these situations. (shrink)

Using ethnographic data gathered at a mandated, community-based drug treatment program for women offenders, this article analyzes how gendered notions of the self and of autonomy shape penal governance. This study examines how psychological models of women's deviance, racialized visions of motherhood, and therapeutic techniques of the self come into tension with expectations of responsible, autonomous citizenship. The program prioritized therapeutic ways of governing its clients over those that emphasized economic self-reliance, rational decision making, and normalizing (...) gender. This is because staff attributed criminal and addictive behaviors to women's inadequate self-understanding and lack of emotional autonomy in personal relations. Staff discouraged women's motherhood and paid labor because they saw these external obligations as a threat to women's autonomous selfhood. This research complicates claims that contemporary forms of penal treatment manage offenders through rational incentives and personal responsibility by pointing to the ways that subject formation is a gendered process. (shrink)

: The "therapeutic misconception," described by Paul Appelbaum and colleagues more than 20 years ago, refers to the tendency of participants in clinical trials to confuse the design and conduct of research with personalized medical care. Although the "therapeutic misconception" has become a term of art in research ethics, little systematic attention has been devoted to the ethical significance of this phenomenon. This article examines critically the way in which Appelbaum and colleagues formulate what is at stake in (...) the therapeutic misconception, paying particular attention to assumptions and implications that clinical trial participation disadvantages research participants as compared with receiving standard medical care. After clarifying the ethical significance of the therapeutic misconception with respect to the decision making of patients, we offer policy recommendations for obtaining informed consent to participation in clinical trials. (shrink)

The ‘Precautionary Principle’ provides a somewhat ill-defined guide, often of uncertain normative status, for those exercising administrative decision-making power in circumstances where that may create potential risks to human health or the environment. This paper seeks to explore to what extent the precautionary principle should have been and was in fact utilised by the Australian Therapeutic Goods Administration (TGA) in its decision to approve the marketing of sunscreens containing titanium dioxide (TiO2) and zinc oxide (ZnO) in (...) nanoparticulate form. In particular, this article assesses to what extent better application of that principle might have altered the TGA’s decision that TiO2 and ZnO ENPs in sunscreens do not require new safety testing, because they are considered to be functionally equivalent to their bulk counterparts. (shrink)

Evidence-based medicine (EBM) puts forward a hierarchy of evidence for informing therapeutic decisions. An unambiguous interpretation of how to apply EBM's hierarchy has not been provided in the clinical literature. However, as much as an interpretation is provided proponents suggest a categorical interpretation. The categorical interpretation holds that all the results of randomised trials always trump evidence from lower down the hierarchy when it comes to informing therapeutic decisions. Most of the critical replies to EBM react to this (...) interpretation. While proponents of EBM can avoid some of the problems raised by critics by suitably limited the claims made on behalf of the hierarchy, further problems arise. If EBM is to inform therapeutic decisions then a considerably more restricted, and context dependent interpretation of EBM's hierarchy is needed. (shrink)

To address the burden of maternal morbidity and mortality in low‐ and middle‐income countries (LMICs), research with pregnant women in these settings is increasingly common. Pregnant women in LMIC‐context may experience vulnerability related to giving consent to participate in a clinical trial. To recognize possible layers of vulnerability this study aims to identify factors that influence the decision process towards clinical trial participation of pregnant women in an urban middle‐income setting. This qualitative research used participant observation, in‐depth interviews, and (...) focus group discussion with medical staff and pregnant women eligible for trial participation, at a regional hospital in Accra, Ghana. Besides lack of familiarity with modern scientific concepts, specific factors influencing the decision‐making process were identified. These include a wide power difference between health provider and patient, and a different perception of risk through externalization of responsibility of risk management within a religious context as well as a context shaped by authority. Also, therapeutic misconception was observed. The combination of these factors ensued women to rely on the opinion of the medical professional, rather than being guided by their own motivation to participation. Although being a (pregnant) woman per se should not render the label of being vulnerable, this study shows there are factors that influence the decision process of pregnant woman towards trial participation in a LMIC context that can result in vulnerability. The identification of context‐specific factors that can create vulnerability facilitates adaptation of the design and conduct of research in a culturally competent manner. (shrink)

Subjects enrolled in studies testing high risk interventions for incurable or progressive brain diseases may be vulnerable to deficiencies in informed consent, such as the therapeutic misconception. However, the definition and measurement of the therapeutic misconception is a subject of continuing debate. Our qualitative pilot study of persons enrolled in a phase I trial of gene transfer for Parkinson disease suggests potential avenues for both measuring and preventing the therapeutic misconception. Building on earlier literature on the topic, (...) we developed and tested an interview guide that focuses on how the subjects decided to participate, emphasizing the integration of subjects’ various statements that are relevant to assessing the therapeutic misconception, rather than evaluating them as isolated statements. The results indicate that a subject’s understanding of the purpose of research is best explored in juxtaposition to the subject’s motivation for participating. (shrink)

_ This scholarly article explores the critical role of professional ethics in the field of counseling and psychotherapy. Ethical considerations are fundamental to maintaining the integrity and trustworthiness of mental health professionals. The paper examines the core principles and ethical guidelines that govern the practice of counseling and psychotherapy, addressing the complexities and challenges that practitioners may encounter. Through an in-depth analysis, the article emphasizes the significance of ethical decision-making, confidentiality, cultural competence, and ongoing professional development in fostering (...) positive therapeutic outcomes. _. (shrink)

Incommensurability is the impossibility to determine how two options relate to each other in terms of conventional comparative relations. This book features new research on incommensurability from philosophers who have shaped the field into what it is today, including John Broome, Ruth Chang and Wlodek Rabinowicz. The book covers four aspects relating to incommensurability. In the first part, the contributors synthesize research on the competing views of how to best explain incommensurability. Part II illustrates how incommensurability can help us deal (...) with seemingly insurmountable problems in ethical theory and population ethics. The contributors address the Repugnant Conclusion, the Mere Addition Paradox and so-called Spectrum Arguments. The chapters in Part III outline and summarize problems caused by incommensurability for decision theory. Finally, Part IV tackles topics related to risk, uncertainty and incommensurability. Value Incommensurability: Ethics, Risk, and Decision-Making will be of interest to researchers and advanced students working in ethical theory, decision theory, action theory, and philosophy of economics. (shrink)

The stakes associated with an algorithmic decision are often said to play a role in determining whether the decision engenders a right to an explanation. More specifically, “high stakes” decisions are often said to engender such a right to explanation whereas “low stakes” or “non-high” stakes decisions do not. While the overall gist of these ideas is clear enough, the details are lacking. In this paper, we aim to provide these details through a detailed investigation of what we (...) will call the “Simple Stakes Thesis”. The Simple Stakes Thesis, as it will turn out, is too simple. For even if the stakes associated with a specific one-off decision are low—and hence does not engender a right to an explanation—such decisions may nevertheless form part of a high stakes pattern or aggregate of decisions. In such cases, we argue, even a low stakes decision may engender a right to explanation. Not only does this show that the right to explanation is more demanding than so far recognized. It also shows that the stakes thesis is significantly harder to apply in practice. (shrink)

Theoretical debates about the nature of grief and bereavement draw attention to the sensitivity of carrying out research with bereaved people, the possible threats that this may pose and the ethical considerations required to ameliorate potentially damaging outcomes. The authors of this article present a framework for ethical decision-making that has been successfully developed in the context of research with bereaved families. The discussion focuses on application and evaluation of the framework during research with family members who were (...) approached about the donation of a deceased relative’s organs and/or tissues for transplantation. Practical strategies of relevance to the processes of participant recruitment, the interview encounter and follow-up care in the post-interview period are identified and discussed. Concerns about the possible impact of bereavement research are balanced with the views of family members who gave credence to the therapeutic and cathartic benefits of participating in sensitive, death-related research. (shrink)

BackgroundPaternalism/overprotection limits communication between healthcare professionals and patients and does not promote shared therapeutic decision-making. In the global north, communication patterns have been regulated to promote autonomy, whereas in the global south, they reflect the physician’s personal choices. The goal of this study was to contribute to knowledge on the communication patterns used in clinical practice in Mexico and to identify the determinants that favour a doctor–patient relationship characterized by low paternalism/autonomy.MethodsA self-report study on communication patterns in (...) a sample of 761 mental healthcare professionals in Central and Western Mexico was conducted. Multiple ordinal logistic regression models were used to analyse paternalism and associated factors.ResultsA high prevalence (68.7% [95% CI 60.0–70.5]) of paternalism was observed among mental health professionals in Mexico. The main determinants of low paternalism/autonomy were medical specialty (OR 1.67 [95% CI 1.16–2.40]) and gender, with female physicians being more likely to explicitly share diagnoses and therapeutic strategies with patients and their families (OR 1.57 [95% CI 1.11–2.22]). A pattern of highly explicit communication was strongly associated with low paternalism/autonomy (OR 12.13 [95% CI 7.71–19.05]). Finally, a modifying effect of age strata on the association between communication pattern or specialty and low paternalism/autonomy was observed.ConclusionsAmong mental health professionals in Mexico, high paternalism prevailed. Gender, specialty, and a pattern of open communication were closely associated with low paternalism/autonomy. Strengthening health professionals’ competencies and promoting explicit communication could contribute to the transition towards more autonomist communication in clinical practice in Mexico. The ethical implications will need to be resolved in the near future. (shrink)