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)

Abstract.This paper responds to the Expert Patient initiative by questioning its over-reliance on instrumental forms of reasoning. It will be suggested that expertise of the patient suffering from chronic illness should not be exclusively seen in terms of a model of technical knowledge derived from the natural sciences, but should rather include an awareness of the hermeneutic skills that the patient needs in order to make sense of their illness and the impact that the illness has (...) upon their sense of self-identity. By appealing to MacIntyre’s concepts of “virtue” and “practice”, as well as Frank’s notion of the “wounded story-teller”, it will be argued that chronic illness can be constituted as a practice, by building a culture of honest and courageous story-telling about the experience of chronic suffering. The building of such a practice will renew the cultural resources available to the patient, the physician and the rest of the community in understanding illness and patient-hood. (shrink)

Abstract.This introduction outlines key elements in a recent United Kingdom Department of Health report that, it is hoped, will change attitudes, expectations and practices in the care of patients with chronic illness [Department of Health: 2001, The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century. London: Department of Health.]. The findings of the Task Force are summarised as accurately as possible and without comment. Analysis and comment can be found in the accompanying papers.

In France, the Kouchner law of 2002 has allowed for a rethinking of patients’ rights; as well, it introduced the notion of health democracy. For example, in oncology, advocacy groups for patients and ex-patients now provide support and information to patients, representation of patients in health care institutions and state agencies, education to caregivers, and opportunities for participation in research. In fact, such advocacy groups have been so impactful that some patients have gone on to work in the health care (...) system itself; it is this rise in professionalism that is of interest in this article, where we will discuss the first results of two ongoing research projects on the subject. (shrink)

Abstract.This paper critiques particular aspects of the published UK government Department of Health’s proposal to promote ‘The Expert Patient’ as a way of enhancing patient autonomy and reducing reliance on limited health care resources. Although the broad aims of the report are supported the detail is criticised on the basis that lack of clarity over key terms, including ‘expert’ ‘illness’ and ‘disease’, means that there is no clear focus for action and threatens to undermine the effectiveness (...) of the proposals. (shrink)

BackgroundEthics consultation is recognized as an opportunity to share responsibility for difficult decisions in prenatal medicine, where moral intuitions are often unable to lead to a settled decision. It remains unclear, however, if the general standards of ethics consultation are applicable to the very particular setting of pregnancy.Main textWe sought to analyze the special nature of disagreements, conflicts and value uncertainties in prenatal medicine as well as the ways in which an ethics consultation service (ECS) could possibly respond to them (...) and illustrated our results with a case example. Ethics facilitation and conflict mediation, currently, have no broadly consented normative framework encompassing prenatal diagnosis and therapy as well as reproductive choice to draw on. Even so, they can still be helpful instruments for ethically challenging decision-making in prenatal medicine provided two additional rules are respected: For the time being, ECSs should (a) refrain from issuing content-heavy recommendations in prenatal medicine and (b) should not initiate conflict mediations that would involve the pregnant woman or couple as a conflict party.ConclusionIt seems to be vital that ethics consultants as well as health care professionals acknowledge the current limitations and pitfalls of ethics consultation in prenatal medicine and together engage in the advancement of standards for this particularly complex setting. (shrink)

‘Individualized medicine’ is an emerging paradigm in clinical life science research. We conducted a socio-empirical interview study in a leading German clinical research group, aiming at implementing ‘individualized medicine’ of colorectal cancer. The goal was to investigate moral and social issues related to physician–patient interaction and clinical care, and to identify the points raised, supported and rejected by the physicians and researchers. Up to now there has been only limited insight into how experts dedicated to individualized medicine view its (...) problems. Interviews with researchers and clinicians were based on a prestructured questionnaire. The content analysis revealed a broad spectrum of opinions. Major findings were disappointments with the limits of the current therapy regimen and clinical practice; problematic impacts on physician–patient relationship; and an informed consent procedure which is mainly based on paternalistic assumptions. According to our analysis, major problems will be uncertainties related to the biomarker's sensitivity and specificity, and the identification of ‘non-responders’. However, the findings also indicate that experts expect evidence-based medicine to replace decisions based on gut feeling or hierarchical structures. (shrink)

‘Individualized medicine’ is an emerging paradigm in clinical life science research. We conducted a socio-empirical interview study in a leading German clinical research group, aiming at implementing ‘individualized medicine’ of colorectal cancer. The goal was to investigate moral and social issues related to physician–patient interaction and clinical care, and to identify the points raised, supported and rejected by the physicians and researchers. Up to now there has been only limited insight into how experts dedicated to individualized medicine view its (...) problems. Interviews with researchers and clinicians (n= 19) were based on a prestructured questionnaire. The content analysis revealed a broad spectrum of opinions. Major findings were (a) disappointments with the limits of the current therapy regimen and clinical practice; (b) problematic impacts on physician–patient relationship; and (c) an informed consent procedure which is mainly based on paternalistic assumptions. According to our analysis, major problems will be uncertainties related to the biomarker's sensitivity and specificity, and the identification of ‘non-responders’. However, the findings also indicate that experts expect evidence-based medicine to replace decisions based on gut feeling or hierarchical structures. (shrink)

In this essay, I argue that the daily practice of expert nurses goes far toward enacting the kind of patient autonomy feminist bioethicists envision. Nursing theorists often utilize philosophical theories in their work, but bioethicists have not paid much attention to nursing theory and what it means to be an expert nurse. This is unfortunate because expert nurses do much in their daily practice to make the ideals for autonomy put forth by feminist bioethicists a reality. (...) With this in mind, I bring these two literatures together in what I hope is a fruitful dialogue. (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)

This study explored tacit knowledge based on an expert nurse's practice who cares for stroke patients by using the hermeneutic phenomenological approach. The participant (‘Ms. A’) was a nursing researcher and college faculty member involved in the education of advanced practice nurses; her specialty was stroke rehabilitation nursing. She was asked to describe the meaning and value she gained from her memorable nursing experiences. Four interviews—approximately 1 h each—were conducted, and the associated data were interpreted together with the participant (...) based on the method of interpretive circulation. Notably, the analysis was ended when a fusion of horizons was recognized. The participant recalled her nursing experiences based on six model cases. During the analysis, the following five elements were extracted: [belief in the ability of vulnerable people to survive]; [being together]; [respect for human dignity]; [preparedness to respond to and bear suffering together]; and [theoretical knowledge base approaches true understanding of patient experience]. Further, the nursing model—the Roy Adaptation Model—utilized by Ms. A in the process of recognizing humans as whole beings was deeply interpreted and implemented as a guideline for her implicit advanced practice. Moreover, her deep understanding and utilization of theoretical knowledge base also built the foundation for her implicit advanced practice. In conclusion, Ms. A's tacit knowledge and the elements support the process of tacit knowledge acquisition. Her narratives, hermeneutic attitude as an interpreter, and learning attitude throughout interaction with others will strongly help her knowledge development. We intend to continue the study with multiple participants and explore the structure of tacit knowledge possessed by advanced practitioners. Future endeavours will include the development of a tacit knowledge learning strategy. (shrink)

In May 2013 a new Assisted Dying Bill was tabled in the House of Lords and is currently scheduled for a second reading in May 2014. The Bill was informed by the report of the Commission on Assisted Dying which itself was informed by evidence presented by invited experts.

Chest pain is the pain felt in the chest by infants, children and adolescents. In most cases the pain is not associated with the heart. It is mainly recognized by the observance or report of pain by the infant, child or adolescent by reports of distress by parents or care givers. Chest pain is not unusual in children. Lots of children are seen in ambulatory clinics, emergency rooms and hospitals and cardiology clinics. Usually there is a benign cause for the (...) pain for utmost children. Certain patients have conditions that are serious and perhaps life-threatening. Chest pain in pediatric patients needs careful physical examination and a detailed history that would point to the possibility of a serious cause. Researches of pediatric chest pain are scarce. It has been difficult to create evidence-based guidelines for evaluation. In this paper we propose an expert system to help doctors and parents, and care giver in diagnosing chest pain in infants and children. This expert System is design and implemented in SL5 Object language. (shrink)

BlOMQVIST K, THEANDER E, MOWIDE I and LARSSON V. Nursing Inquiry 2010; 17: 317–323 What happens when you involve patients as experts? a participatory action research project at a renal failure unitAlthough there is a trend towards developing health care in a patient‐centred direction, changes are usually planned by the professionals without involving the patients. This paper presents an ongoing participatory action research project where patients with chronic renal failure, nurses at a specialist renal failure unit, a hospital manager (...) and a researcher worked together to develop patient‐centred care. The project combined the expertise of patients in their own experiences of living with a chronic condition with the professional expertise of nurses, the manager and the researcher. As the workload on the unit was uneven, the development work needed to be low in intensity but long‐term. Based on a number of dialogues in focus groups, four main development areas were identified; access to test results, prerequisites for postponing the progress of the illness, general awareness and understanding of living with chronic renal failure, and family‐focused care. A number of changes have been planned or implemented, such as developing a prototype for a web‐based feed‐back system, expanding patient education to newly diagnosed patients, steering the nurses' role towards a guiding and family‐focused function, and planning a digital story‐telling workshop. Involving committed people who have the mandate to change practices were prerequisites for success. (shrink)

Background: With the coming of the Industrial Revolution, the levels of pollution grow significantly. This Technological development contributed to the worsening of shortness breath problems in great shape. especially in infants and children. There are many shortness breath diseases that infants and children face in their lives. Shortness of breath is one of a very serious symptom in children and infants and should never be ignored. Objectives: Along these lines, the main goal of this expert system is to help (...) physician in diagnosing and describe some common causes of shortness of breath in infants and children by diagnosing their cases through our expert system. Moreover, this system which we are presenting will give patient the appropriate diagnosis of disease and the treatment required. Methods: In this paper the strategy of the expert system for diagnosing a number of the existed shortness of breath in infants and children diseases such as (Asthma , Bronchiolitis, Viral Pneumonia, cough, Shortness of breath' dyspnea ', Epiglottitis, Croup, ABSCESS in the tonsil 'peritonsillar abscess', Bronchitis, Viral Bronchitis, Wheezing, sudden infant death syndrome 'SIDS' ) is introduced, an overview about the shortness of breath in children and infants diseases are delineated, the cause of diseases are sketched and the treatment of disease whenever conceivable is given . SL5 Object Expert System language was utilized for designing and implementing the proposed expert system. Results: The proposed shortness of breath in children and infants diseases diagnosis expert system was estimated by Medical students and they were satisfied with its result. Conclusions: The Proposed expert system is very useful for Respiratory physician, pediatrician, recently graduated physician, and for children's parents with shortness of breath problem. (shrink)

Background: Depression (major depressive disorder) is a common and serious medical illness that negatively affects how you feel, the way you think and how you act. Fortunately, it is also treatable. Depression causes feelings of sadness and/or a loss of interest in activities once enjoyed. It can lead to a variety of emotional and physical problems and can decrease a person’s ability to function at work and at home. Depression affects an estimated one in 15 adults (6.7%) in any given (...) year. And one in six people (16.6%) will experience depression at some time in their life. Depression can strike at any time, but on average, first appears during the late teens to mid-20s. Women are more likely than men to experience depression. Some studies show that one-third of women will experience a major depressive episode in their lifetime. Objectives: The main goal of this expert system is to get the appropriate diagnosis of disease and the correct treatment and give the appropriate method of treatment through several tips that concern the disease and how to treat it and we will see it through the application on the expert system. Methods: in this paper the design of the proposed Expert System which was produced to help Psychologist in diagnosing depression disease through its symptoms such as: a loss of energy, a change in appetite, sleeping more or less, anxiety, reduced concentration, indecisiveness, restlessness, feelings of worthlessness, guilt or hopelessness and thoughts of self-harm or suicide. The proposed expert system presents an overview about depression disease is given, the cause of diseases is outlined and the treatment of disease whenever possible is given out. SL5 Object Expert System language was used for designing and implementing the proposed expert system. Results: The proposed depression disease diagnosis expert system was evaluated by psychologist students and they were satisfied with its performance. Conclusions: The Proposed expert system is very useful for psychologist, patients with depression and newly graduated psychologist. (shrink)

Background: Arthritis is very common but is not well understood. Actually, “arthritis” is not a single disease; it is an informal way of referring to joint pain or joint disease. There are more than 100 different types of arthritis and related conditions. People of all ages, sexes and races can and do have arthritis, and it is the leading cause of disability in America. More than 50 million adults and 300,000 children have some type of arthritis. It is most common (...) among women and occurs more frequently as people get older. Common arthritis joint symptoms include swelling, pain, stiffness and decreased range of motion. Symptoms may come and go. They can be mild, moderate or severe. They may stay about the same for years, but may progress or get worse over time. Severe arthritis can result in chronic pain, inability to do daily activities and make it difficult to walk or climb stairs. Arthritis can cause permanent joint changes. These changes may be visible, such as knobby finger joints, but often the damage can only be seen on X-ray. Some types of arthritis also affect the heart, eyes, lungs, kidneys and skin as well as the joints. Objectives: The main goal of this expert system is to get the appropriate diagnosis of disease and the correct treatment and give the appropriate method of treatment through several tips that concern the disease and how to treat it and we will see it through the application on the expert system. Methods: in this paper the design of the proposed Expert System which was produced to help Orthopedist in diagnosing Arthritis disease through its symptoms such as: pain on pressure in a joint , Inflammation indicated by joint swelling, Stiffness especially in the morning , Loss of flexibility of joint, Limited, joint movement, Deformity of the joints , Weight loss and fatigue , Non-specific fever and Crepitus. The proposed expert system presents an overview about Arthritis disease is given, the cause of diseases is outlined and the treatment of disease whenever possible is given out. SL5 Object Expert System language was used for designing and implementing the proposed expert system. Results: The proposed Arthritis disease diagnosis expert system was evaluated by Orthopedics students and they were satisfied with its performance. Conclusions: The Proposed expert system is very useful for Orthopedist, patients with arthritis and newly graduated Orthopedics students. (shrink)

Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either as essentially different (...) from or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices and the collection and making accessible of techniques. (shrink)

Patient self-management programs have become increasingly popular and are now also receiving official endorsements. This paper analyses two possible types of positive justifications for promoting patient self-management: evidence-based and patient-centred justifications. It is argued that evidence-based justifications, although important politically are deficient and that the primary justification for patient self-management must be a patient-centred justification focusing on the patient’s privileged access to his or her own lived body.

It is generally accepted that the therapeutic relationship between professionals and patients is one of trust. Nonetheless, some patient groups carry certain social vulnerabilities that can be exacerbated when they extend trust to health-care professionals. In exploring the epistemic and ethical implications of expert status, this paper examines how calls to trust may increase epistemic oppression and perpetuate the vulnerability of people with impairments. It critically evaluates the processes through which epistemic communities are formed or determined, and examines (...) the institutional structure and power relations that contribute to or sustain such self-affirming ideological communities. It also argues for a two-way collaborative approach between professionals and people with impairments that recognizes the role of local knowledge in enhancing professionals’ own understanding of their theoretical framework and promoting responsive practices and policies. (shrink)

This article focuses on patients' participation in decision‐making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision‐making meetings within a Foucauldian perspective. Patients' participation in decision‐making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective of patients, there (...) is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision‐making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision‐making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A ‘projectification’ of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de‐professionalization. In that light, participation of patients in decision‐making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. (shrink)

One problematic aspect of the rationality of medical practice concerns the relation between expert knowledge and non-expert knowledge. In medical practice it is important to match medical knowledge with the self-knowledge of the individual patient. This paper tries to study the problem of such matching by describing a model for technological paradigms and comparing it with an ideal of technological rationality. The professionalised experts tend to base their decisions and actions mostly on medical knowledge while the rationality (...) of medicine also involves just as important elements of the personal evaluation and knowledge of the patients. Since both types of knowledge are necessary for rational decisions, the gap between the expert and the non-expert has to be bridged in some way. A solution to the problem is suggested in terms of pluralism, with the patient as ultimate decision-maker. (shrink)

How closely involved with hospital ethics committees should patients and their families become? Should they routinely have access to committees, or be empowered to initiate consultations? To what extent should they be informed of the content or outcome of committee deliberations? Seeing ethics committees as the locus of competing responsibilities allows us to respond to the questions posed by a patient rights model and to acknowledge more fully the complex moral dynamics of clinical medicine.

The provider–patient relationship is typically regarded as an expert-to-novice relationship, and with good reason. Providers have extensive education and experience that have developed in them the competence to treat conditions better and with fewer harms than anyone else. However, some researchers argue that many patients with long-term conditions (LTCs), such as arthritis and chronic pain, have become “experts” at managing their LTC. Unfortunately, there is no generally agreed-upon conception of “patient expertise” or what it implies for the (...) provider–patient relationship. I review three prominent accounts of patient expertise and argue that all face serious objections. I contend, however, that a plausible account of patient expertise is available and that it provides a framework both for further empirical studies and for enhancing the provider–patient relationship. (shrink)

The puzzling case of the broken arm -- Hernias, diets, and drugs -- Why physicians cannot know what will benefit patients -- Sacrificing patient benefit to protect patient rights -- Societal interests and duties to others -- The new, limited, twenty-first-century role for physicians as patient assistants -- Abandoning modern medical concepts: doctor's "orders" and hospital "discharge" -- Medicine can't "indicate": so why do we talk that way? --"Treatments of choice" and "medical necessity": who is fooling whom? (...) -- Abandoning informed consent -- Why physicians get it wrong and the alternatives to consent: patient choice and deep value pairing -- The end of prescribing: why prescription writing is irrational -- The alternatives to prescribing -- Are fat people overweight? -- Beyond prettiness: death, disease, and being fat -- Universal but varied health insurance: only separate is equal -- Health insurance: the case for multiple lists -- Why hospice care should not be a part of ideal health care I: the history of the hospice -- Why hospice care should not be a part of ideal health care II: hospice in a postmodern era -- Randomized human experimentation: the modern dilemma -- Randomized human experimentation: a proposal for the new medicine -- Clinical practice guidelines and why they are wrong -- Outcomes research and how values sneak into finding of fact -- The consensus of medical experts and why it is wrong so often. (shrink)

The law applicable to genomics in the United States is currently in transition and under debate. The rapid evolution of the science, burgeoning clinical research, and growing clinical application pose serious challenges for federal and state law. Although there has been some empirical work in this area, this is the first paper to survey and interview key scientific and legal stakeholders in the field of genomics to help ground identification of the most important legal problems that must be solved to (...) successfully integrate genomics into clinical care. The respondents in this study identified a wide range of interconnected issues, focusing specifically on the need for clear guidelines about how to use these data, fear of liability for those who use these data, and the need to protect patients from use of this information particularly by insurers, while endorsing data sharing. Developing legal strategies to support appropriate use of genomics now and in the future clearly will require making trade-offs, taking into account the full complexity of this legal ecosystem. (shrink)

Feigning symptoms distorts diagnostic evaluations. Therefore, dedicated tools known as symptom validity tests have been developed to help clinicians differentiate feigned from genuine symptom presentations. While a deviant SVT score is an indicator of a feigned symptom presentation, a non-deviant score provides support for the hypothesis that the symptom presentation is valid. Ideally, non-deviant SVT scores should temper suspicion of feigning even in cases where the patient fits the DSM’s stereotypical yet faulty profile of the “antisocial” feigner. Across three (...) studies, we tested whether non-deviant SVT scores, indeed, have this corrective effect. We gave psychology students and clinical experts a case alluding to the DSM profile of feigning. In successive steps, they received information about the case, among which non-deviant SVT outcomes. After each step, participants rated how strongly they suspected feigning and how confident they were about their judgment. Both students and experts showed suspicion rates around the midpoint of the scale and did not respond to non-deviant SVT outcomes with lowered suspicion rates. In Study 4, we educated participants about the shortcomings of the DSM’s antisocial typology of feigning and the importance of the negative predictive power of SVTs, after which they processed the case information. Judgments remained roughly similar to those in Studies 1–3. Taken together, our findings suggest that students and experts alike have difficulties understanding that non-deviant scores on SVTs reduce the probability of feigning as a correct differential diagnosis. (shrink)

Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. -/- Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to (...) Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. -/- Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. -/- Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion. (shrink)

Background: Advocacy is an important role of psychiatric nurses because their patients are ethically, socially, and legally vulnerable. This study of Japanese expert psychiatric nurses’ judgments of interventions for patient advocacy will show effective strategies for ethical nursing practice and their relationship with Japanese culture. Objectives: This article explores Japanese psychiatric nurses’ decision to intervene as a patient advocate and examine their ethical, cultural, and social implications. Research design: Using semi-structured interviews verbatim, themes of the problems that (...) required interventions were inductively summarized by a qualitative analysis and their contexts and nursing judgments were examined. Participants and research context: The participants were 21 nurses with 5 or more years of experience in psychiatric nursing. Ethical considerations: The research was approved by Institutional Review Board of research site and study facilities. The participants gave written informed consent. Findings: Analysis of 45 cases showed that nurses decided to intervene when surrounding people’s opinions impeded patients’ safety, healthcare professionals’ policies impeded patients’ decision-making, own violent behaviors impeded treatment and welfare services for patients, own or families’ low acceptance of illness impeded patients’ self-actualization, inappropriate treatment or care impeded patients’ liberty, and their families abused patients’ property. Discussion: To solve conflicts between patients and their surrounding people, the nurses sought reconciliation between them, which is in accordance with Japanese cultural norms respecting harmony. When necessary, however, they protected patients’ rights against cultural norms. Therefore, their judgments cannot be explained by cultural norms alone. Conclusion: The findings indicate that the nurses’ judgments were based on respect for patients’ rights apart from cultural norms, and they first sought solutions fitting the cultural norms before other solutions. This seems to be an ethical, effective strategy if advocates know the culture in depth. (shrink)

In this paper we aim to discuss a theoretical explanation for the positive relationship between patients’ knowledge and their trust in healthcare personnel. Our approach is based on John Dewey’s notion of continuity. This notion entails that the individual’s experiences are interpreted as interrelated to each other, and that knowledge is related to future experience, not merely a record of the past. Furthermore, we apply Niklas Luhmann’s theory on trust as a way of reducing complexity and enabling action. Anthony Giddens’ (...) description and analysis of the high modern society provides a frame for discussing the preconditions for patient-healthcare personnel interaction. High modernity is dominated by expert systems and demands trust in these. We conclude that patient knowledge and trust in healthcare personnel is related because both knowledge and trust are future- and action-oriented concepts. The traits of high modernity provides opportunities and challenges as the personnel can and must perform discretion. This discretion must be made in a context where knowledge is considered uncertain and preliminary. (shrink)

Participation of end users in decision-making on science is increasingly practiced, as witnessed by the growing body of scientific literature on case evaluations. In the biomedical field, however, end-user participation in decision-making is rare. Some scholars argue that because patients are stakeholders and relevant experts, they could also provide important contributions to decision-making within the field of biomedical research. But what strategies could be used to effectively implement patient participation in decision-making on biomedical research? In this article, we analyze (...) strategies for patient participation and conclude that these can hardly be regarded effective because they do not ensure patients' structural influence on decision-making. We identify obstacles for effective patient participation, which seem to reflect a resilience of the current biomedical decision-making network. We subsequently elaborate on the concept of transition management in the search for clues on how to breach this resilience and change the network toward the inclusion of patients. (shrink)

Background and Purpose The decision to perform decompressive craniectomy for patients with malignant MCA syndrome can be ethically complex. We investigated factors that clinicians consider in this decision-making process. Methods A survey including clinical vignettes and attitudes questions surrounding the use of hemicraniectomy in malignant MCA syndrome was distributed to 203 neurosurgeons, neurologists, staff and residents, and nurses and allied health members specializing in the care of neurological patients. These were practicing health care providers situated in an urban setting in (...) Canada where access to health care is covered by national policy and is a human right. Results Eighty-eight participants responded to survey. All participants unanimously supported the procedure for young and healthy patients. Advanced age, the presence of aphasia, comorbid medical conditions, and poor baseline functional status were dominant factors associated with increasing reluctance to offer surgical decompression. Patients’ previously expressed wishes were also an important consideration. Eighty-six percent of respondents agreed that withholding surgery is ethically justified if the outcome is perceived as futile. Conclusions Health care providers use similar factors to determine if aggressive management is justified given anticipated burden on patient quality of life and extended impact on society. This convergence can be harnessed beneficially for the transparent communication of medical options in the ethically complex setting of decompressive hemicraniectomy post-stroke. (shrink)

BackgroundThe current debate about medical futility is mostly driven by theoretical and personal perspectives and there is a lack of empirical data to document experts and public attitudes towards medical futility.MethodsTo examine the attitudes of the Japanese experts in the fields relevant to medical futility a questionnaire survey was conducted among the members of the Japan Association for Bioethics. A total number of 108 questionnaires returned filled in, giving a response rate of 50.9%. Among the respondents 62% were healthcare professionals (...) (HCPs) and 37% were non-healthcare professionals (Non-HCPs).ResultsThe majority of respondents (67.6 %) believed that a physician's refusal to provide or continue a treatment on the ground of futility judgment could never be morally justified but 22.2% approved such refusal with conditions. In the case of physiologically futile care, three-quarters believed that a physician should inform the patient/family of his futility judgment and it would be the patient who could decide what should be done next, based on his/her value judgment. However more than 10% said that a physician should ask about a patient's value and goals, but the final decision was left to the doctor not the patient. There was no statistically significant difference between HCPs and Non-HCPs (p = 0.676). Of respondents 67.6% believed that practical guidelines set up by the health authority would be helpful in futility judgment.ConclusionThe results show that there is no support for the physicians' unilateral decision- making on futile care. This survey highlights medical futility as an emerging issue in Japanese healthcare and emphasizes on the need for public discussion and policy development. (shrink)

The standard of proof in criminal trials should require that the evidence presented by the prosecution is robust. This requirement of robustness says that it must be unlikely that additional information would change the probability that the defendant is guilty. Robustness is difficult for a judge to estimate, as it requires the judge to assess the possible effect of information that the he or she does not have. This article is concerned with expert witnesses and proposes a method for (...) reviewing the robustness of expert testimony. According to the proposed method, the robustness of expert testimony is estimated with regard to competence, motivation, external strength, internal strength and relevance. The danger of trusting non-robust expert testimony is illustrated with an analysis of the Thomas Quick Case, a Swedish legal scandal where a patient at a mental institution was wrongfully convicted for eight murders. (shrink)

The Eurotransplant Kidney Allocation System (ETKAS) emerged from the XCOMB model by Wujciak and Opelz (1993a,b), who applied computer simulation studies to create an allocation algorithm. The present study investigated how experts would allocate a donated organ to patients on the waiting list with respect to the five allocation factors proposed in the ETKAS (number of mismatches, mismatch probability, waiting time, distance, international exchange balance). The experts’ evaluations were compared to the ETKAS points as well as to factor weights established (...) in mandatory allocation guidelines which are based on the German law for organ allocation (Transplantationsgesetz). The investigation was carried out using a conjoint analysis. Overall, the results indicate a fairly high degree of agreement between the experts’ opinions and the existing allocation system ETKAS and even more so for the allocation guidelines, in particular, with respect to the factors Mismatches, Mismatch probability, and Waiting time. (shrink)

BackgroundCritical Incident Reporting Systems (CIRS) provide a well-proven method to identify clinical risks in hospitals. All professions can report critical incidents anonymously, low-threshold, and without sanctions. Reported cases are processed to preventive measures that improve patient and staff safety. Clinical ethics consultations offer support for ethical conflicts but are dependent on the interaction with staff and management to be effective. The aim of this study was to investigate the rationale of integrating an ethical focus into CIRS.MethodsA six-step approach combined (...) the analysis of CIRS databases, potential cases, literature on clinical and organizational ethics, cases from ethics consultations, and experts’ experience to construct a framework for CIRS cases with ethical relevance and map the categories with principles of biomedical ethics.ResultsFour main categories of critical incidents with ethical relevance were derived: (1) patient-related communication; (2) consent, autonomy, and patient interest; (3) conflicting economic and medical interests; (4) staff communication and corporate culture. Each category was refined with different subcategories and mapped with case examples and exemplary related ethical principles to demonstrate ethical relevance.ConclusionThe developed framework for CIRS cases with its ethical dimensions demonstrates the relevance of integrating ethics into the concept of risk-, quality-, and organizational management. It may also support clinical ethics consultations’ presence and effectiveness. The proposed enhancement could contribute to hospitals’ ethical infrastructure and may increase ethical behavior, patient safety, and employee satisfaction. (shrink)

Background:Since the adoption of the Universal Declaration of Human Rights by the United Nations in 1948, human rights as set out in government documents have gradually changed, with more and more power being transferred to individual.Objectives:The aim of this article is to analyze how the position of the patient in need of care is constructed in Norway’s renamed and revised Patients’ and Service Users’ Rights Act (originally Patients’ Rights Act, 1999) and published comments which accompanying this legislation from the (...) Norwegian Ministry of Health and Care Service.Research design:A constructivist design was used, and Fairclough’s critical discourse approach was adopted to analyze the text of the Patients’ and Service Users’ Rights Act and comments.Findings:The analysis identified three discourses: (a) political discourse, containing ethical discourses about priority and economy, in which patients are constructed as powerless individuals; (b) expert discourse, containing a theme about patients’ trust in the healthcare team and its knowledge, in which patients are constructed as helpless individuals lacking knowledge; and (c) patient participation and patient autonomy discourse, containing ethical discourses about decision-making, in which patients are constructed not only as individuals with needs and rights but also as “troublesome.”Conclusion:Dominant paternalistic discourses in the legal text validate the power of medicine, the healthcare system, and heath personnel over the needs, rights, participation, and autonomy of the patient. (shrink)

Muslim physicians and Islamic jurists analyze the moral dimensions of biomedicine using different tools and processes. While the deliberations of these two classes of experts involve judgments about the deliverables of the other's respective fields, Islamic jurists and Muslim physicians rarely engage in discussions about the constructs and epistemic frameworks that motivate their analyses. The lack of dialogue creates gaps in knowledge and leads to imprecise guidance. In order to address these discursive and conceptual gaps we describe the sources of (...) knowledge and reasoning employed by Islamic jurists and clinicians to resolve the question of when a patient must seek healthcare. As we examine both the scriptural evidence and legal reasoning of jurists and the types of medical evidence used by clinicians to address the same question, we draw attention to the epistemic frameworks and constructs at play and identify how constructs from one field may sharpen the deliberative exercises of the other. Hence our work advances discourses at the intersection of Islam and medicine and offers building blocks for a comprehensive Islamic framework that fully integrates the deliverables of medical science within the deliberations of Islamic jurists. (shrink)

Tom Reucher uses excerpts from the writings of various psychology specialists who operate as experts with respect to transsexuality. A close reading shows that these texts produce discrediting, insulting, sexist, homophobic and transphobic discourses. These writings show the fear of the so-called « experts », whose attachment to obsolete theories leaves them ignorant of the questions around transsexuality. Transsexuals and transgenders who speak up against the professionals and experts speaking in their place is something new in France. It goes along (...) with the reappropriation of their identity by self-naming and the creation of organizations to defend their rights. Medical and surgical practices can lead to the violation of the human rights of transsexuals and transgenders. The protocols of care for transnssexual and transgender patients are maladapted and out of synch with the evolution of knowledge and of society. Transgenders are excluded from the system of medical care. (shrink)

The Helsinki Declaration is a very important document regarding the protection of patients’ rights in clinical trials and one of the fundamental sources of operational principles for every ethics committee. Although they have been updated, the international guidelines for ethics committees continually fail to address certain issues pertaining to the protection of patients’ rights in clinical trials. These issues include, most significantly, the method of electing ethics committees (a free, secret ballot should be preferred to direct appointment), the avoidance of (...) conflict of interest during the election of ethics committee members, and the necessary insurance coverage for the participants of clinical trials. Polish law should, on the other hand, be developed in such way as to not limit the effectiveness of ethics committees in protecting patients’ rights in clinical trials. The ideal solution would be to draft a uniform law concerning not only clinical trials, but all medical experiments. The opinions of experts who have been reviewing medical research projects for several years may prove to be especially valuable in this setting. (shrink)

National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both (...) countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture. (shrink)

This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of person- and (...) patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the enacted and negotiated forms of person- and patienthood are culturally embedded and normatively charged. In order to examine and investigate this twofold aim, an empirical material has been gathered that comprises observations and in-depth interviews with patients and caregivers at four haemodialysis units, one in Riga, Latvia, and three in Stockholm, Sweden. The theoretical approach and methodology of the study is cultural and phenomenological in character, drawing on an ethnological and anthropological understanding of culture as processual and relational, and on a phenomenological understanding of personhood as embodied and intertwined with the surrounding world. The thesis shows that patients’ encounters and attempts to deal with the diagnoses and treatments associated with kidney failure are complex and often misalign them with the normatively charged orientations enacted and recommended by medicine. The complex situation that emerges when they undergo transplantation, for example, stands in stark contrast to the widespread official view of organ transplantation as a self-evidently health-bringing and normalising therapy. Through their repeated and extensive experiences of undergoing haemodialysis and living with the disease, patients eventually become able to create a synthesis between their lived experiences of their own body and their body as a medical object – what in the thesis is called a ‘sick body’ – a synthesis that allows them to reorient themselves in life and experience a sense of direction. This process relies, to a large extent, on the temporal structure that haemodialysis affords life; it is by repeatedly undergoing the treatment that patients become able to create a sick body. Even so, many of them find this temporal structure problematic; they experience it as disruptive of their control and future-orientedness and as causing an existentially difficult-to-handle boredom. The thesis also shows that the political developments and the norms prevalent in the two national contexts studied greatly affect the orientations of the treatment practices and the participants’ lives. In both Riga and Stockholm, ideals of freedom, activity, control, and self-actualisation influence what forms of patienthood and personhood are enacted. The study indicates that persons who fall ill with a serious and chronic disease only gradually become able to understand and actively cope with their differently embodied circumstances of life. This suggests that medical professionals should not too hastily enlist their patients as experts on their own bodies, but rather provide them with the time and support necessary for making repeated attempts at creating and maintaining a life with a sick body. (shrink)

The moral discourse surrounding end-of-life (EoL) decisions is highly complex, and a comparison of Germany and Israel can highlight the impact of cultural factors. The comparison shows interesting differences in how patient’s autonomy and doctor’s duties are morally and legally related to each other with respect to the withholding and withdrawing of medical treatment in EoL situations. Taking the statements of two national expert ethics committees on EoL in Israel and Germany (and their legal outcome) as an example (...) of this discourse, we describe the similarity of their recommendations and then focus on the differences, including the balancing of ethical principles, what is identified as a problem, what social role professionals play, and the influence of history and religion. The comparison seems to show that Israel is more restrictive in relation to Germany, in contrast with previous bioethical studies in the context of the moral and legal discourse regarding the beginning of life, in which Germany was characterized as far more restrictive. We reflect on the ambivalence of the cultural reasons for this difference and its expression in various dissenting views on passive euthanasia and advance directives, and conclude with a comment on the difficulty in classifying either stance as more or less restrictive. (shrink)

Coronavirus disease 2019 can lead to respiratory failure. Some patients require extracorporeal membrane oxygenation support. During the current pandemic, health care resources in some cities have been overwhelmed, and doctors have faced complex decisions about resource allocation. We present a case in which a pediatric hospital caring for both children and adults seeks to establish guidelines for the use of extracorporeal membrane oxygenation if there are not enough resources to treat every patient. Experts in critical care, end-of-life care, bioethics, (...) and health policy discuss if age should guide rationing decisions. (shrink)