In lieu of an abstract, here is a brief excerpt of the content:Lisa’s StoryLisa P. (wife of patient) and Jeanne KerwinMy husband suffered from sudden onset of heart failure with a very low ejection fraction and was on IV Milrinone at the age of 47. One of the most powerful things he told me was that he was not afraid to die and therefore did not want to move forward with Milrinone. He eventually “did it for the kids.” After (...) the Milrinone drip was no longer working, he was offered an LVAD (left ventricular assist device) to keep him alive. He refused, but the doctor again convinced him to “do it for your kids” and said, “we put these devices in 80-year-olds.” He did not have time to explore any other options and reluctantly accepted the LVAD. It was implanted in May of 2014 in a very long and complicated surgery with a long and difficult recovery. He was in the hospital for a long time, and then he refused to go to rehab upon discharge, making it difficult for our family to manage, as he was extremely weak and needed care of his wound dressing. He worried about the financial [End Page 7] impact of a heart transplant and the medications required, as we were already struggling with the medical bills. He refused to have more surgery with the potential complications and never agreed to get on the transplant waiting list.After the implanted LVAD, my husband was not able to do most of what he loved in life. He couldn’t work (he was a truck driver), he couldn’t go fishing or swimming in the ocean, he couldn’t go hunting and fishing, and his overall physical condition was so poor that he couldn’t cook, garden and, most aggravating to him, he could not take a regular hot shower. The LVAD had to be covered with plastic in order to avoid getting the drive-line area wet, so bathing was a complicated process. He had trouble with stairs, had neuropathic pain in his legs from diabetes, and because of the pain medications, he felt cloudy and dizzy and slept most of the day in his recliner. I took care of him, even after I had to go back to work, and at the same time, I managed our two children (ages 9 and 12 at the time of LVAD).After almost two years of living with the LVAD, multiple hospitalizations for GI bleeds then seizures, more medications, and weekly blood draws for INR1, my husband requested that the LVAD be de-activated and that he be allowed to die of his heart failure. He described his life as “miserable.” He watched as his misery impacted his children and me. He suffered daily and had none of the joys that made life worth living for him. When we approached the cardiac team that implanted and monitored his LVAD with his request, they said “no.” They would not de-activate the LVAD because it was working. It was keeping him alive and he had no other terminal illness. His palliative doctor, who was treating his pain, also heard his request and told us to call for an “ethics consult” to determine if he would be “allowed” to have the LVAD de-activated. We got the number and called on March 31, 2016.At the time of the call to Ethics, we had no idea what “Ethics” was, other than a general definition of the word ethics as in professional behaviors and such. We did not know what to expect but we called. We would never have known to call “Ethics” if the palliative doctor had not advised us to do so, and my husband might have suffered a longer, more painful life both mentally and physically prolonged by the LVAD.We explained the request to the ethics consultant. She listened to my husband describe his daily living and his dissatisfaction with the quality of his life, his physical and emotional suffering, and his wish to rid himself of the LVAD and allow nature to take its course. There was actually no decision to be made on his part. He had already made up... (shrink)

A Christian ethicist discusses such problems as organ transplants, caring for the terminally ill, and defining death.

Book reviewed in this article: For the Patient's Good: The Restoration of Beneficence in Health Care. By Edmund D. Pellegrino and David C. Thomasma.

The slogan “Do Your Own Research” (DYOR) is often invoked by people who are distrustful, even downright sceptical, of recognized expert authorities. While this slogan may serve various rhetorical purposes, it also expresses an ethic of inquiry that valorises independent thinking and rejects uncritical deference to recognized experts. This paper is a qualified defence of this ethic of inquiry in one of the central contexts in which it might seem attractive. I use several case studies of patient activist groups (...) to argue that these groups often engage in valuable independent research that advances biomedical knowledge. In doing so they demonstrate the value of “lay expertise” and the epistemic as well as political necessity of not simply deferring to recognized experts. I also give some reasons why patient activist groups often produce valuable biomedical knowledge: they are examples of what I call “research collectives”. Research collectives are research communities that differ from the traditional research communities we find in universities and research institutes in that their members typically lack formal relevant scientific credentials and training. But they are similar in that they have internal structures—training procedures, norms of discussion, venues for holding discussions—that facilitate the production of knowledge. I finish by suggesting that future research into the differences and similarities between research collectives and traditional research communities is required. (shrink)

Recently adopted health care practices and policies describe themselves as “patient-centered care.” The meaning of the term, however, remains contested and obscure. This paper offers a typology of “patient-centered care” models that aims to contribute to greater clarity about, continuing discussion of, and further advances in patient-centered care. The paper imposes an original analytic framework on extensive material covering mostly US health care and health policy topics over several decades. It finds that four models of patient-centered (...) care emphasize: patients versus their parts; patients versus providers; patients/providers/states versus “the system”; and patients and providers as persons. Each type is distinguishable along three dimensions: epistemological orientations, practical accommodations, and policy tools. Based on this analysis, the paper recommends that four questions be asked of any proposal that claims to provide patient-centered care: Is this care a means to an end or an end in itself? Are patients here subjects or objects? Are patients here individuals or aggregates? How do we know what patients want and need? The typology reveals that models are neither entirely compatible nor entirely incompatible and may be usefully combined in certain practices and policies. In other instances, internal contradictions may jeopardize the realization of coherent patient-centered care. (shrink)

Background The nursing profession requires ethical and legal regulations to guide nurses’ performance. Ethical climate plays a part in shaping nurses’ ethical practice. Therefore, ethico-legal aspects and ethical climate contribute to improving nurses’ ethical practice and competencies with reducing medical errors in hospital settings. Objective This study examined the effect of ethico-legal aspects and ethical climate on managing safe patient care and medical errors among nurses. Materials and methods A cross-sectional correlational study was carried out on 548 nurses. Data (...) were collected through self-administered questionnaires about nurses’ knowledge in both ethical and legal aspects, ethical practice, competencies, ethical climate and experience with medical error. Results The main sources of nurses’ knowledge of ethical and legal aspects were undergraduate lectures, job experience and colleagues. Nurses’ knowledge in both ethical and legal aspects, nurses’ ethical practice and competencies were insufficient. Nurses fairly perceived their ethical climate. Also, nurses experienced medical errors about 22.6% in their units. Nurses’ knowledge of ethical and legal aspects, as well as the ethical climate were positive predictors of inadequate nurses’ ethical practice and competencies. Additionally, nurses’ knowledge in both ethical and legal aspects, ethical climate and practice had a negative influence on the occurrence of medical errors. Conclusion Enhancing nurses’ knowledge in both ethical and legal aspects as well as ethical climate could significantly influence improving nurses’ ethical practice, competencies and reducing medical errors in the study units. Therefore, planning for enhancing the nurses’ ethico-legal learning and ethical climate seems to be mandatory. (shrink)

The standard approach to treatment decision making for incapacitated patients often fails to provide treatment consistent with the patient’s preferences and values and places significant stress on surrogate decision makers. These shortcomings provide compelling reason to search for methods to improve current practice. Shared decision making between surrogates and clinicians has important advantages, but it does not provide a way to determine patients’ treatment preferences. Hence, shared decision making leaves families with the stressful challenge of identifying the patient’s (...) preferred treatment option. To address this concern, the present paper proposes to incorporate the use of a “Patient Preference Predictor” (PPP) into the shared decision-making process between surrogates and clinicians. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Use of a PPP is likely to increase the chances that incapacitated patients are treated consistent with their preferences and values and might reduce the stress and burden on their surrogates. Including a PPP in the shared decision-making process therefore has the potential to realize important ethical goals for making treatment decisions for incapacitated patients. The present paper justifies this approach on conceptual and normative grounds. (shrink)

There are substantial data establishing that surrogates are often mistaken in predicting what treatments incompetent patients would have wanted and that supplements such as advance directives have not resulted in significant improvements. Rid and Wendler’s Patient Preference Predictor (PPP) proposal will attempt to gather data about what similar patients would prefer in a variety of treatment choices. It accepts the usual goal of patient autonomy and the Substituted Judgment principle for surrogate decisions. I provide reasons for questioning sole (...) reliance on autonomy when surrogates, not patients, are deciding and for giving some independent weight to patient well-being. Moreover, that family members, typical surrogates, will know best what the patient if incompetent would have wanted is not the only reason why they are chosen. The more pressing problem is that the PPP would fail to remove the more serious mistakes that empirical psychology over the last few decades has shown to infect such decision making. (shrink)

Abstract.The United Kingdom Department of Health initiative on “The Expert Patient” (2001) reflects recent trends in political philosophy, ethics and health services research. The overall objective of the initiative is to encourage patients, particularly those suffering from chronic conditions to become more actively involved in decisions concerning their treatment. In doing so there would be (perhaps) an expectation of better patient compliance and (arguably) a resultant improvement in quality of life. Despite these anticipated beneficial influences on health outcomes, (...) there may be a danger that such initiatives are being carried along by the general swell of enthusiasm for recognising and facilitating the claims of disadvantaged or discriminated against groups. What more attractive than that patients should be “liberated” from what might be seen as the oppression of medical paternalism? To a great extent the potential for success of the Expert Patient venture turns on:(a) whether and to what extent a patient can be considered truly to be an expert and (b) full acceptance by the medical and heath care professions of allowing patients a more equitable and positive role.Whilst clearly the patient is an expert in the hermeneutic sense – it is they and they alone who experience their illness – there is nevertheless a risk of confusing experience with expertise. Experience limited to an individual does not of itself give rise to the generalisations that underlie reliable clinical treatment. Neither do the vast majority of patients possess the physiological and pharmacological knowledge to fully appreciate the biological nature of their illness nor the basis, risks or limitations of therapeutic measures. Might the notion of “The Expert Patient” as informed co-decision maker become a well-meaning but rather vacuous aspiration similar to that of informed consent? Even worse, could patient “empowerment” have a deleterious effect? The paper reviews some of the major issues and concludes that the expert patient initiative could have benefits for both patients and health professionals if operated on the basis of concordance: an informed collaborative alliance that optimises the potential benefits of medical care. (shrink)

The identification of human rights issues has become more prominent in statements from national and international nursing organisations such as the American Nurses Association and the United Kingdom’s Royal College of Nursing with the International Council of Nursing asserting that human rights are fundamental to and inherent in nursing and that nurses have an obligation to promote people’s health rights at all times in all places. However, concern has been expressed about this development. Human rights may be seen as the (...) imposition of legal considerations for nurses and other healthcare workers to bear in mind, as yet more responsibilities with the consequent fear of litigation. Although a more hopeful scenario is that consideration of human rights is something that is supportive of good practice. If this more hopeful scenario is to be realised, the role of education will be crucial. As with human rights generally, human rights education is a global phenomenon, a practice-orientated expression of the Universal Declaration of Human Rights, and the goal of human rights education is to build a culture of respect and action for human rights for all. However, the nature of human rights has long been contested. A ‘mapping exercise’ of the academic literature on human rights identified ‘four schools’ or ‘ideal types’ that have shaped thinking about human rights. This sets out the conceptual context in which human rights problems are defined and solutions are proposed, which is particularly important for human rights education. However, it also complicates the picture. The different approaches taken by the four ‘types’ would likely lead to different outcomes in terms of human rights education. It is timely to discuss the nature of human rights education and examine its potential for impact on patient care. This will involve identifying the challenges and potential benefits of this approach and analysing the implications for professional practice. (shrink)

The process of medicalization has been analyzed in the medical humanities with disapprobation, with much emphasis placed on its ability to reinforce existing social power structures to ill effect. While true, this is an incomplete picture of medicalization. I argue that medicalization can both reinforce and disrupt existing social hierarchies within the clinic and outside of it, to ill or good effect. We must attend to how this takes place locally and globally lest we misunderstand how medicalization mediates power and (...) justice. I provide concrete examples of how this occurs by considering dysesthesia ethiopsis, autism, chronic fatigue syndrome, depression, and HIV/AIDS. (shrink)

In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the article, (...) different versions of SDM are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship. (shrink)

ObjectiveIn Belgium, people with an incurable psychiatric disorder can file a request for euthanasia claiming unbearable psychic suffering. For the request to be accepted, it has to meet stringent legal criteria. One of the requirements is that the patient possesses decision-making capacity. The patient’s decision-making capacity is assessed by physicians.The objective of our study is to provide insight in the assessment of decision-making capacity in the context of euthanasia for patients with psychic suffering caused by a psychiatric disorder.MethodTwenty-two (...) semistructured interviews with psychiatrists and neurologists were analysed with NVivo, a qualitative analysis software to code and organise transcribed data.ResultsDifferent views and approaches regarding decision-making capacity in the context of euthanasia emerged from the data.Most of the physicians have some knowledge of the cognitive ability approach on decision-making capacity. According to this approach, four abilities constitute decision-making capacity: communication, understanding, appreciation and reasoning. We observed differences in the way these abilities are valued in relation to competence. Some physicians take additional elements into consideration when assessing decision-making capacity.Physicians acquired their knowledge on the subject in many different ways. Most of the physicians reported that decision-making capacity was not part of their training.ConclusionWe conclude that physicians assess decision-making capacity in different ways and that personal values and beliefs influence their approach. As such, a common approach in assessing the decision-making capacity of a patient among the interviewed physicians is lacking. Less arbitrariness could be obtained by consistently implementing the cognitive ability approach. (shrink)

Learning to assume responsibility or "ownership" for patient care is an important aspect of learning what it means to be a physician. To date, most of the research on patient ownership has focused on residents' understanding of what it means to own patients. This exploratory study explored third- and fourth-year students', residents, and attending physicians' understanding of the phrase "taking ownership of a patient." Data included participant observations and interviews that expanded over a five month period. Interviews (...) were transcribed and analyzed using psychological ownership as an analytical lens and latent content analysis as a method. Third-year students primarily understood the phrase to mean communicating with patients and their immediate team. Fourth-year students indicated it was an expectation to contribute to the management of patient care. Residents and faculty thought patient ownership included an emotional investment in patients. The phrase taking ownership of patients is understood differently depending on where participants are in their development, even though it is assumed there is a shared understanding across team members. Given the variability in understanding, educators should have explicit discussions with learners about commonly used concepts to help them develop sophisticated understandings and monitor their own development. (shrink)

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

Having a decreased sense of security leads to unnecessary suffering and distress for patients. Establishing trust is critical for nurses to promote a patient's sense of security, consistent with trauma‐informed care. Research regarding nursing action, trust, and sense of security is wide‐ranging but fragmented. We used theory synthesis to organize the disparate existing knowledge into a testable middle‐range theory encompassing these concepts in hospitals. The resulting model illustrates how individuals are admitted to the hospital with some predisposition to trust (...) or mistrust the healthcare system and/or personnel. Patients encounter circumstances increasing their emotional and/or physical vulnerability to harm, leading to experiences of fear and anxiety. Without intervention, fear and anxiety lead to a decreased sense of security, increased distress, and suffering. Nurse action can ameliorate these effects by increasing a hospitalized person's sense of security or by promoting the development of interpersonal trust, also leading to an increased sense of security. Increased sense of security results in diminished anxiety and fear, and increased hopefulness, confidence, calm, sense of value, and sense of control. The consequences of a decreased sense of security are harmful to patients and nurses should know that they can intervene in ways that both increase interpersonal trust and sense of security. (shrink)

Background and aim Healthcare professionals are regularly exposed to moral challenges in patient care potentially compromising quality of care and safety of patients. Preventive clinical ethics support aims to identify and address moral problems in patient care at an early stage of their development. This study investigates the occurrence, risk factors, early indicators, decision parameters, consequences and preventive measures of moral problems. Method Semi-structured expert interviews were conducted with 20 interprofessional healthcare professionals from 2 university hospitals in Basel, (...) Switzerland. A Likert scale questionnaire was completed by the interviewees and analysed using descriptive and inferential statistics. Results Healthcare professionals are frequently exposed to a variety of moral problems, such as end-of-life decisions, resource allocation and assessing the patient's will or decisional capacity. Thirty-four different risk factors for moral problems are identified, e.g. patient vulnerability, divergent values or world views, inadequate resources or poor ethical climate. Twenty-one early indicators are recognised such as disagreement between healthcare professionals, patients and relatives, emotional disturbances, gut feeling or conflict of conscience. A variety of preventive measures are suggested and presented in a preventive clinical ethics support process model. The most helpful measures are early ethical conversations with colleagues, early team-internal ethical case discussions and an ethics-trained contact person on the ward. Ethics training, kerbside consultations, proactive ethics consultations, ethics screening and rounds are also considered helpful. Conclusions Clinical ethics support services should not only offer reactive and complex, but also proactive and low-threshold support for healthcare professionals, patients and relatives. (shrink)

The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three discursive practices are found: (1) the nurses’ power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin. The first and (...) the predominant discursive practice can be explained with an ideology of paternalism, in which the nurses used biomedical explanations and the ethical principle of benefice to justify their actions. The second can be explained with an ideology of participation, in which the nurses used ethical narratives as a way to let the patients participate in the treatment. The third seemed to involve autonomous decision-making and the ethical principle of autonomy for the next of kin in the difficult end-of-life decisions. (shrink)

This paper throws some light on the nature of argumentation, its use and advantages, within the setting of doctor–patient interaction. It claims that argumentation can be used by doctors to offer patients reasons that work as ontological conditions for enhancing the decision making process, as well as to preserve the institutional nature of their relationship with patients. In support of these claims, selected arguments from real-life interactions are presented in the second part of the paper, and analysed by means (...) of a model of argumentation borrowed from classical rhetoric, and refined according to the modern orientation of the pragma-dialectic approach. (shrink)

We commend Mergenthaler and colleagues for bringing the topic of patient recruitment and consent in intracranial electrophysiology research to the attention of the neuroethics community. Mergenthal...

It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this thedisability discrimination problem.Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper offers and (...) defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified. (shrink)

From an ethical point of view, shared decision-making is preferable to either physician paternalism or patient sovereignty. The traditional model of doctor-patient communication is too directive and too unconcerned with the patient's values to support truly shared decision-making. The traditional distinction between rhetoric and sophistic can provide the basis for a new model of mutual persuasion that does not limit communication to information, and that avoids the spectre of manipulation.

Contrary to the widespread concern about over-treatment at the end of life, today, patient preferences for palliative care at the end of life are frequently respected. However, ethically challenging situations in the current healthcare climate are, instead, situations in which a competent patient requests active treatment with the goal of life-prolongation while the physician suggests best supportive care only. The argument of futility has often been used to justify unilateral decisions made by physicians to withhold or withdraw life-sustaining (...) treatment. However, we argue that neither the concept of futility nor that of patient autonomy alone is apt for resolving situations in which physicians are confronted with patients' requests for active treatment. Instead, we integrate the relevant arguments that have been put forward in the academic discussion about ‘futile’ treatment into an ethical algorithm with five guiding questions: (1) Is there a chance that medical intervention will be effective in achieving the patient's treatment goal? (2) How does the physician evaluate the expected benefit and the potential harm of the treatment? (3) Does the patient understand his or her medical situation? (4) Does the patient prefer receiving treatment after evaluating the benefit-harm ratio and the costs? (5) Does the treatment require many resources? This algorithm shall facilitate approaching patients' requests for treatments deemed futile by the physician in a systematic way, and responding to these requests in an ethically appropriate manner. It thereby adds substantive considerations to the current procedural approaches of conflict resolution in order to improve decision making among physicians, patients and families. (shrink)

The present study aims to explore the forms paternalistic communication can take in doctor–patient interactions and how they should be considered from a normative perspective. In contemporary philosophical debate, the problem with paternalism is often perceived as either undermining autonomy (the autonomy problem) or the paternalist viewing their judgment as superior (the superiority problem). In either case, paternalism is problematized mainly in a general, theoretical sense. In contrast, this paper investigates specific doctor–patient encounters, revealing distinct types of paternalistic (...) communication. For this study, I reviewed videorecorded encounters from a Norwegian hospital to detect paternalism—specifically, doctors overriding patients' expressed preferences, presumably to benefit or protect the patients. I identified variations in paternalistic communication styles—termed paternalist modes—which I categorized into four types: the fighter, the advocate, the sympathizer, and the fisher. Drawing on these findings, I aim to nuance the debate on paternalism. Specifically, I argue that each paternalist mode carries its own normative implications and that the autonomy and the superiority problems manifest differently across the modes. Furthermore, by illustrating paternalism in communication through real‐life cases, I aim to reach a more comprehensive understanding of what we mean by paternalistic doctors. (shrink)

Hilary Putnam’s influential analysis of the ‘division of linguistic labour’ has a striking application in the area of doctor–patient interaction: patients typically think of themselves as consumers of technical medical terms in the sense that they normally defer to health professionals’ explanations of meaning. It is at the same time well documented that patients tend to think they are entitled to understand lay health terms like ‘sickness’ and ‘illness’ in ways that do not necessarily correspond to health professionals’ understanding. (...) Drawing on recent philosophical theories of concept possession, the article argues that this disparity between medical and lay vocabulary implies that it is, in an important range of cases, easier for doctors to create a communicative platform of shared concepts by using and explaining special medical expressions than by using common lay expressions. This conclusion is contrasted with the view that doctors and patients typically understand each other when they use lay vocabulary. Obviously, use of expressions like ‘sickness’ or ‘illness’ does not necessarily lead to poor communication, but it is important that doctors have an awareness of how patients interpret such terms. (shrink)

Cancer has long been a cultural touchstone: a metaphor of devastation and a spectre of social as well as bodily anomie and loss. Yet recent years have witnessed significant transformations in perceptions of cancer, particularly in perceptions of the cancer patient. This paper is concerned with the ‘struggles of subjectivity’ emergent in this transvalued cancer culture. Explored from the standpoint of the ‘bad patient’, and drawing on media and cultural methodologies, the paper will consider the convergence of medicine, (...) morality and popular iconography as they are embedded in the imageries, imaginaries and representational economies of the cancer culture industry. Of particular concern in this context are the (re)composures of the patient, as liminal figure, caught between clinical imperative and cultural fantasy. (shrink)

The aim of this study was to report the results of a literature review of empirical studies on trust within the nurse–patient relationship. A search of electronic databases yielded 34 articles published between 1980 and 2011. Twenty-two studies used a qualitative design, and 12 studies used quantitative research methods. The context of most quantitative studies was nurse caring behaviours, whereas most qualitative studies focused on trust in the nurse–patient relationship. Most of the quantitative studies used a descriptive design, (...) while qualitative methods included the phenomenological approach, grounded theory, ethnography and interpretive interactionism. Data collection was mainly by questionnaires or interviews. Evidence from this review suggests that the development of trust is a relational phenomenon, and a process, during which trust could be broken and re-established. Nurses’ professional competencies and interpersonal caring attributes were important in developing trust; however, various factors may hinder the trusting relationship. (shrink)

Torture is unethical and usually counterproductive. It is prohibited by international and national laws. Yet it persists: according to Amnesty International, torture is widespread in more than a third of countries. Physicians and other medical professionals are frequently asked to assist with torture. -/- Medical complicity in torture, like other forms of involvement, is prohibited both by international law and by codes of professional ethics. However, when the victims of torture are also patients in need of treatment, doctors can find (...) themselves torn. To accede to the requests of the torturers may entail assisting or condoning terrible acts. But to refuse care to someone in medical need may seem like abandoning a patient and thereby fail to exhibit the beneficence expected of physicians. -/- In this paper, we argue that this dilemma is real and that sometimes the right thing for a doctor to do, overall, is to be complicit in torture. Though complicity in a wrongful act is itself prima facie wrongful, this judgment may be outweighed by other factors. We propose three criteria for analyzing how those factors apply to particular cases of medical complicity in torture. (shrink)

David Sackett and Jack Wennberg have each introduced and developed ideas and methods that have had major impacts on how we think about and perform clinical research. Sackett is best known for his work in Evidence-Based Medicine (Sackett et al. 1997); Wennberg, upon noting wide geographic (and other) variations in best practices for the same conditions, stressed the importance of comparative effectiveness in clinical decision-making (Wennberg et al. 1993). When these two collaborated in an editorial about the current state of (...) the art and science of clinical research, it comes as no great surprise that they produced some truly memorable guidance. And, as is so often the case for inspired—and inspiring—advice, their .. (shrink)

The principle of autonomy is widely recognized to be of utmost importance in bioethics; however, we argue that this principle is often misapplied when one fails to distinguish two different contexts in medicine. When a particular patient is offered treatment options, she has the ultimate say in whether to proceed with any of those treatments. However, when deciding whether a particular intervention should be regarded as a form of medical treatment in the first place, it is the medical community (...) who has the ultimate say. Some argue that particular interventions should be allowed by virtue of the fact that they are autonomously requested. But making such an argument fails to distinguish between these two contexts and misapplies the principle of autonomy, ultimately having the potential to instigate problematic changes in the practice of medicine. (shrink)

BackgroundInternationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor (...) an ethical analysis of the issues involved in such a change in process.MethodsThis study employed a systematic review framework in two stems, to integrate literature identified from two searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient access to records and its effects on communication and trust within the doctor-patient relationship; and (2) patient access to medical records and the ethical implications identified). The qualitative and quantitative results of both searches were integrated and critically analysed.Results3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identified for review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to giving information to patients – almost exclusively verbally – is insufficient; that patient access to notes is a welcome next step for patient-centred care, but that simply allowing full access, without explanation or summary, is also insufficient. Several ethical implications need to be considered: increased information could improve patient trust and knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients have conflicting views on how much information should be shared and when; sharing written information might increase the already significant disparity in access to health care, and have unforeseen opportunity costs. The impact on medical practice of sharing notes in real time will also need to be evaluated.ConclusionsThe review presents encouraging data to support patient access to medical notes. However, sharing information is a critical part of clinical practice; changing how it is done could have significant empirical and ethical impacts; any changes should be carefully evaluated. (shrink)

How is a terminally ill patient treated by the surrounding people in the U.S. and Japan? How does a terminally ill patient decide on his or her own treatment? These questions will be examined in a study of intensive medical care, received by a terminally ill Japanese cancer patient in the U.S. and Japan. This casereflects the participant observation by a Japanese anthropologist for about 8 years in the United States and Japan on one patient who (...) was hospitalized in both countries on and off for about eight years. The objective of this study is to illuminate the different concept of personhood between the U.S. and Japan that appeared in different cultural practices of both countries and in the subject’s own decision making process. The significant differences appeared between theU.S. and Japan in the concepts of (1) science, (2) suffering, (3) Power of Attorney and Doisho (Consent Form), and (4) organized care. The interpretation of such differences indicates that seemingly universal practices across countries suggest cultural specific concepts and their management. Therefore, ethical norms appeared differently accordingly to each country. (shrink)

Green bioethics is an area of research and scholarship that examines the impact of healthcare practices and policies on the environment and emphasises environmental values, such as ecological sustainability and stewardship. Some green bioethicists have argued that healthcare providers should inform patients about the environmental impacts of treatments and advocate for options that minimise adverse impacts. While disclosure of information pertaining to the environmental impacts of treatments could facilitate autonomous decision-making and strengthen the patient–provider relationship in situations where patients (...) have clearly expressed environmental concerns, it may have the opposite effect in other situations if makes patients feel like they are being judged or manipulated. We argue, therefore, that there is not a generalisable duty to disclose environmental impact information to all patients during the consent process. Providers who practice green bioethics should focus on advocating for system-level changes in healthcare financing, organisation and delivery and use discretion when bringing up environmental concerns in their encounters with patients. (shrink)

An AI-based “patient preference predictor” (PPP) is a proposed method for guiding healthcare decisions for patients who lack decision-making capacity. The proposal is to use correlations between sociodemographic data and known healthcare preferences to construct a model that predicts the unknown preferences of a particular patient. In this paper, I highlight a distinction that has been largely overlooked so far in debates about the PPP–that between algorithmic prediction and decision-making–and argue that much of the recent philosophical disagreement stems (...) from this oversight. I show how three prominent objections to the PPP only challenge its use as the sole determinant of a choice, and actually support its use as a source of evidence about patient preferences to inform human decision-making. The upshot is that we should adopt the evidential conception of the PPP and shift our evaluation of this technology towards the ethics of algorithmic prediction, rather than decision-making. (shrink)

When it comes to using patient data from the National Health Service for research, we are often told that it is a matter of trust: we need to trust, we need to build trust, we need to restore trust. Various policy papers and reports articulate and develop these ideas and make very important contributions to public dialogue on the trustworthiness of our research institutions. But these documents and policies are apparently constructed with little sustained reflection on the nature of (...) trust and trustworthiness, and therefore are missing important features that matter for how we manage concerns related to trust. We suggest that what we mean by ‘trust’ and ‘trustworthiness’ matters and should affect the policies and guidance that govern data sharing in the NHS. We offer a number of initial, general reflections on the way in which some of these features might affect our approach to principles, policies and strategies that are related to sharing patient data for research. This paper is the outcome of a ‘public ethics’ coproduction activity which involved members of the public and two academic ethicists. Our task was to consider collectively the accounts of trust developed by philosophers as they applied in the context of the NHS and to coproduce an argumentative position relevant to this context. (shrink)

Objective: Little empirical evidence exists to support either side of the ongoing debate over whether legalising physician aid in dying would undermine patient trust.Design: A random national sample of 1117 US adults were asked about their level of agreement with a statement that they would trust their doctor less if “euthanasia were legal [and] doctors were allowed to help patients die”.Results: There was disagreement by 58% of the participants, and agreement by only 20% that legalising euthanasia would cause them (...) to trust their personal physician less. The remainder were neutral. These attitudes were the same in men and women, but older people and black people had more agreement that euthanasia would lower trust. However, overall, only 27% of elderly people and 32% of black people thought that physician aid in dying would lower trust. These views differed with physical and mental health, and also with education and income, with those having more of these attributes tending to view physician aid in dying somewhat more favourably. Again, however, overall views in most of these subgroups were positive. Views about the effect of physician aid in dying on trust were significantly correlated with participants’ underlying trust in their physicians and their satisfaction with care. In a multivariate regression model, trust, satisfaction, age, and white/black race remained independently significant.Conclusion: Despite the widespread concern that legalising physician aid in dying would seriously threaten or undermine trust in physicians, the weight of the evidence in the USA is to the contrary, although views vary significantly. (shrink)

I shall draw on my experience of being an ICU patient to make some practical, ethical, and philosophical points about the care of the critically ill. The recurring theme in this paper is ICU psychosis. I suggest that discharged patients ought to be educated about it; I discuss the obstacles in the way of accurately measuring it; I argue that we must rethink autonomy in light of it; and I suggest that the self disintegrates in the face of it.

When a patient fails to follow the advice or prescription of a physician, she is termed to be "noncompliant" by the medical community. The medical community’s response to and understanding of patient noncompliance fails to acknowledge noncompliance as either a relational failure between physician and patient or as a patient choice. I offer an analysis of Immanuel Kant and Emmanuel Levinas that refocuses the issue of noncompliance by examining the physician role, the doctor–patient relationship, and (...) the nature of responsibility. (shrink)