Unrealistic therapeutic beliefs are very common—the majority of patient-subjects 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: 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 researchers should consider the settings in which it may be possible and practical to obtain ‘two-point consent’. (shrink)
There is an important gap in philosophical, clinical and bioethical conceptions of decision-making capacity. These fields recognize that when traumatic life circumstances occur, people not only feel afraid and demoralized, but may develop catastrophic thinking and other beliefs that can lead to poor judgment. Yet there has been no articulation of the ways in which such beliefs may actually derail decision-making capacity. In particular, certain emotionally grounded beliefs are systematically unresponsive to evidence, and this can block the ability to deliberate (...) about alternatives. People who meet medico-legal criteria for decision-making capacity can react to health and personal crises with such capacity-derailing reactions. One aspect of this is that a person who is otherwise cognitively intact may be unable to appreciate her own future quality of life while in this complex state of mind. This raises troubling ethical challenges. We cannot rely on the current standard assessment of cognition to determine decisional rights in medical and other settings. We need to understand better how emotionally grounded beliefs interfere with decision-making capacity, in order to identify when caregivers have an obligation to intervene. (shrink)
Metaphors used to describe new technologies mediate public understanding of the innovations. Analyzing the linguistic, rhetorical, and affective aspects of these metaphors opens the range of issues available for bioethical scrutiny and increases public accountability. This article shows how such a multidisciplinary approach can be useful by looking at a set of texts about one issue, the use of a newly developed technique for genetic modification, CRISPRcas9.
Empathy is an extensively studied construct, but operationalization of effective empathy is routinely debated in popular culture, theory, and empirical research. This article offers a process-focused approach emphasizing the relational functions of empathy in interpersonal contexts. We argue that this perspective offers advantages over more traditional conceptualizations that focus on primarily intrapsychic features. Our aim is to enrich current conceptualizations and empirical approaches to the study of empathy by drawing on psychological, philosophical, medical, linguistic, and anthropological perspectives. In doing so, (...) we highlight the various functions of empathy in social interaction, underscore some underemphasized components in empirical studies of empathy, and make recommendations for future research on this important area in the study of emotion. (shrink)
An alternative to objectifying approaches to understanding Post-traumatic Stress Disorder grounded in hermeneutic phenomenology is presented. Nurses who provided care for soldiers injured in the Iraq and Afghanistan wars, and sixty-seven wounded male servicemen in the rehabilitation phase of their recovery were interviewed. PTSD is the one major psychiatric diagnosis where social causation is established, yet PTSD is predominantly viewed in terms of the usual neuro-physiological causal models with traumatic social events viewed as pathogens with dose related effects. Biologic models (...) of causation are applied reductively to both predisposing personal vulnerabilities and strengths that prevent PTSD, such as resiliency. However, framing PTSD as an objective disease state separates it from narrative historical details of the trauma. Personal stories and cultural meanings of the traumatic events are seen as epiphenomenal, unrelated to the understanding of, and ultimately, the therapeutic treatment of PTSD. Most wounded service members described classic symptoms of PTSD: flashbacks, insomnia, anxiety etc. All experienced disturbance in their sense of time and place. Rather than see the occurrence of these symptoms as decontextualized mechanistic reverberations of war, we consider how these symptoms meaningfully reflect actual war experiences and sense of displacement experienced by service members. (shrink)
the recent announcement of the claimed births of CRISPR-edited babies has prompted both widespread condemnation and calls by leading scientists for a moratorium on any further germline genome editing for reproductive purposes. Concurrently, national and international bodies are calling for the development of robust guidelines and requirements that will identify permissible conditions under which such GGE efforts may proceed. As detailed recommendations to navigate this unique terrain are under development, we suggest an approach that begins with identifying serious concerns about (...) social exclusion and social justice that arise... (shrink)
In response to increasing use of practice guidelines in medicine, physicians have focused their attention on how these guidelines can restrict their medical practices. However, guidelines not only restrict physician discretion, but they also limit the treatment options available to patients. As a result, treatments which patients consider beneficial may not be recommended; for example, some hysterectomies for abnormal uterine bleeding, and cataract surgery in patients with dementia. When guidelines are used to determine which medical treatments a health care organization (...) or insurer will cover, these recommendations become restrictions. Thus far, guidelines have been developed without adequate attention to the impact that their restrictive use has on diverse patient values.Two significant tensions in current medical ethics relate to the inclusion of patient values in practice guidelines. First, a tension exists between the traditional paternalistic model of care, in which the physician judges unilaterally which treatments will benefit the patient, and the more recent autonomy model, in which the physician elicits the individual patient's health values to determine which treatments will be beneficial. (shrink)
In response to increasing use of practice guidelines in medicine, physicians have focused their attention on how these guidelines can restrict their medical practices. However, guidelines not only restrict physician discretion, but they also limit the treatment options available to patients. As a result, treatments which patients consider beneficial may not be recommended; for example, some hysterectomies for abnormal uterine bleeding, and cataract surgery in patients with dementia. When guidelines are used to determine which medical treatments a health care organization (...) or insurer will cover, these recommendations become restrictions. Thus far, guidelines have been developed without adequate attention to the impact that their restrictive use has on diverse patient values.Two significant tensions in current medical ethics relate to the inclusion of patient values in practice guidelines. First, a tension exists between the traditional paternalistic model of care, in which the physician judges unilaterally which treatments will benefit the patient, and the more recent autonomy model, in which the physician elicits the individual patient's health values to determine which treatments will be beneficial. (shrink)
Walter and Ross rightfully argue that healthcare providers need to employ a less authoritarian, more empowering approach if they want to support patients’ behavioral changes. They show how motivational interviewing (MI), informed by self-determination theory, engages patients and thus may inspire enduring changes. They ground these interventions in an important, new model of relational autonomy, emphasizing the patient’s self-respect and self-cohesion as well as self-determination, and they show how patient–provider interactions influence these three aspects of autonomy. It may be surprising (...) then, that in the first part of this essay, I argue that it is problematic for them to ground their empowerment model in the .. (shrink)
This book offers an in-depth analysis of the cognitive and ethical role of emotion, particularly empathy, in medical practice. The author explains how doctors can use empathy in diagnosing and treating patients without jeopardizing their objectivity or projecting their own values on to patients.
What are the limits of the use of artificial intelligence in the relational aspects of medical and nursing care? There has been a lot of recent work and applications showing the promise and efficiency of AI in clinical medicine, both at the research and treatment levels. Many of the obstacles discussed in the literature are technical in character, regarding how to improve and optimize current practices in clinical medicine and also how to develop better data bases for optimal parameter adjustments (...) and predictive algorithms. This paper argues that there are also in principle obstacles to the application of AI in clinical medicine and care where empathy is important, and that these problems cannot be solved with any of the technical and theoretical approaches that shape the current application of AI in specific areas of clinical medicine in which care for patients is fundamental. This is important, because it generates specific risks that may be overlooked otherwise, and it justifies the necessity of human monitoring and emotional intervention in clinical medicine. Consequently, difficult issues concerning moral and legal responsibility may ensue if these in principle problems are ignored. (shrink)
