BackgroundCancer patients often suffer from psychological distress during or after cancer treatment, but the use of psycho-oncological care among cancer patients is limited. One of the reasons might be that the way psycho-oncological care is organized, does not fit patients’ preferences. This study aimed to obtain detailed insight into cancer patients’ preferences regarding the organization of psycho-oncological care.Methods18 semi-structured interviews were conducted among cancer patients. Patients completed psycho-oncological treatment between 2015 and 2020 at the psychology department in a general hospital (...) or a center specialized in psychological cancer care in the Netherlands. The interview comprised questions related to preferences regarding the institute where to receive treatment, the psychologist who provides treatment, and the type of treatment, as well as questions related to experienced barriers and facilitators to receive psycho-oncological care. Interviews were digitally recorded and transcribed verbatim. Data were analyzed individually by two coders into key issues and themes.ResultsRegarding the institute, easy accessibility and prompt availability of psychol-oncological care were considered important. Regarding the psychologist, most participants had a strong preference to be treated by a psychologist specialized in cancer or other somatic diseases. Individual face-to-face therapy was preferred above other types of treatment. Several barriers were mentioned to receive psycho-oncological treatment, among which poor accessibility to psycho-oncological care, lack of knowledge on the possibilities for psycho-oncological treatment, and stigma. Most frequently mentioned facilitators were being assertive to ask for help, having a good relationship with the healthcare professional, and the integration of psycho-oncological support within medical cancer care.ConclusionFrom the patient’s perspective, the organization of psycho-oncological care for cancer patients should focus on easy accessibility and availability, delivered by specialized psychologists, and integration in medical cancer care. Online and group therapy are acceptable, but individual face-to-face therapy is preferred. It is warranted to increase awareness on psycho-oncological care targeting both patients and healthcare providers. (shrink)

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients responded.Main outcome (...) measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (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.

Although we theorize that nurses ‘make a difference’ to patient outcomes and speculate that this happens because nurses ‘care’, there is so far little evidence to support this nebulous claim. Efforts to promote care as the defining characteristic of nursing, and an ‘ethic of care’ as the ethical basis of nursing, have sparked debate within the discipline. This debate has resulted in a polarization that has effectively stalled productive discourse on the issues. Moreover, the focus on care has been at (...) the expense of understanding the true nature of the relationship between caring and the broader base of ethical knowledge that underpins nursing and that must underpin nursing if it is a viable practice profession. This paper used the framework of philosophical argument to explore the moral and ethical foundations of nursing from the perspective of personal and public morals, and responsive nurse–patient relationships as the reflection of ethical nursing knowledge. The foundation of ethical nursing knowledge is the personal moral sense that resides within the individual and that nurses hold in common with others. Personal moral knowledge is transformed into disciplinary ethical knowledge specific to nursing through disciplinary consensus. Responsive relationships are conceptualized in the nursing literature as founded on three essential elements: respect, trust, and mutuality. These three elements are grounded in ethical nursing knowledge; therefore responsive nurse–patient relationships reflect both personal moral knowledge and disciplinary ethical knowledge. By facilitating the articulation of ethical nursing knowledge in practice, responsive relationships connect theory, ethical knowledge, and clinical outcomes. (shrink)

Public health aims to provide universal safety and progressive opportunities to populations to realise their highest level of health through prevention of disease, its progression or transmission. Screening asymptomatic individuals to detect early unapparent conditions is an important public health intervention strategy. It may be designed to be compulsory or voluntary depending on the epidemiological characteristics of the disease. Integrated screening, including for both syphilis and cancer of the cervix, is a core component of the national reproductive health program in (...) Kenya. Screening for syphilis is compulsory while it is voluntary for cervical cancer. Participants’ perspectives of either form of screening approach provide the necessary contextual information that clarifies mundane community concerns. (shrink)

In this paper, I will explore the concept that healing activities shape the objects of therapy and seek to construct those objects through therapeutic activities. Objects of therapy are the persons, patients, human bodies, diseases, physiological processes and personal suffering—that which clinical medicine constructs through its distinctive formative processes, practices and knowledge. The rationale for choice of philosophical sources namely, Cassirer, Foucault, the anthropological perspective of Good and the sociological account of Frank will be discussed. The claim articulated by (...) Good will be examined and its relationship to culture, illness, medical knowledge, practice, truth, and science. I then focus on Frank's concepts of the patient and the body and how medical knowledge and practices affects it. The concept that the medicalization of the illness narrative silences the patient's voice requiring an ethic of listening will be emphasized, described and further supported by Charon's (2006, Narrative medicine: Honoring the stories of illness. New York, NY: Oxford University Press) and Cassell's (2015, The nature of suffering and the goals of medicine. New York, NY: Oxford University Press) thoughts on narrative of illness in clinical medicine. My position concludes that healing activities construct the objects of therapy: as the medical culture's way of seeking truth; as medicine's way of mediating and organizing forms of reality through culture and symbolic forms; and, as medicine's way of entering the body and constructing the disease. Lastly, I suggest that in spite of the remarkable progress in the control of disease, the failure to address the interpretation of illness meanings is a fundamental flaw in the work of “doctoring.” The experience and meanings of illness are at the centre of clinical practice and is a moral, political, ethical and professional obligation. The person is a cultural construct, a complex and culturally shaped way of experiencing self and other, and cultural “work” is required to constitute the person who is the object of medical attention and it also necessitates the ethic of listening. (shrink)

By empirically investigating the neural correlates of the basic experience one makes of oneself as bodily self and of its alterations, new light can be shed on the relationship between self-disturbances and social deficits in schizophrenia. We review recent neuroscientific evidence showing how a pre-reflective, experiential understanding of others can be accomplished, so that others are conceived as bodily selves by means of neural reuse of our own sensorimotor and visceromotor resources, and how a clear distinction between self and other (...) is normally preserved. By conjugating identity and alterity, a putative neural mechanism is provided underpinning the blurring of such distinction in schizophrenic patients. The reviewed empirical data suggest brain function anomalies at the levels of multisensory integration, differential processing of self- and other-related bodily information, and mediating self-experience at the basis of an imbalance in the pre-reflective relationship of the embodied self to the world including the social environment. (shrink)

Recovery from a range of common medical conditions requires patients to have the will to change their behaviour. The authors argue that the proper recognition of the role of willpower in recovery is necessary for effective treatment.

Microethics is about the ethics of everyday clinical practice. The subtle nuances in communication between doctor and patient (the doctor’s choice of words, tone, body language, gestures, etc.) can influence the exercise of the patient’s autonomy. The four models of the doctor- patient/physician-patient relationship (paternalistic, informative, interpretive, deliberative) weigh respect for autonomy and beneficence in varying proportions. Each model may be appropriate in certain circumstances. This article considers these models from the perspective of microethics and the unique dimensions (...) created by the doctor-child-parent relationship. In particular, the article considers the nuances to the autonomy principle created by the child’s developing maturity and the parent’s role as a co-fiduciary of the child’s interests. Ultimately, the deliberative model seems most appropriate to the paediatric setting, since it accommodates the child’s developing maturity in making healthcare-related decisions. This model infuses care into the doctor’s communication with the child and parent. (shrink)

This article explores refusal of medical treatment by adult patients from ethical and legal perspectives. Initially, consequentialist and deontological ethical theory are outlined. The concepts of autonomy, paternalism and competence are described and an overview of Beauchamp and Childress’s principle-based approach to moral reasoning is given. Relevant common law is discussed and the provisions of the Mental Capacity Act 2005 in assessing competence is evaluated. In order to demonstrate the consideration of moral issues in clinical practice, ethical theory is applied (...) to two well-known incidents: the case of Re MB, where doubt over decision-making capacity led to a paternalistic act to override a patient’s choice; and the death of Emma Gough, a situation where respect for autonomy prevailed when healthcare staff acted lawfully in following a patient’s refusal of life-saving treatment. Finally, guidance from regulatory bodies on the roles and responsibilities of health professionals in relation to this topic are considered. (shrink)

The Emergency Department is a crucial medical treatment unit of hospital specializing in emergency medicine. EDs are responsible for providing immediate healthcare facilities to patients arriving without prior appointment. Thus, evaluating patient satisfaction is of immense importance for efficient service delivery. Very few studies are found in Pakistan, related to patients’ satisfaction and utilization of ED services both from demand and supply perspective of ED-Services Supply Chains. Data was collected to assess 200 patient’s satisfaction towards quality of healthcare (...) services of ED of Sindh Government Qatar Hospital, Orangi town-a tertiary care hospital in Karachi. Structured questionnaire was developed to interview patients and their attendants. Results of SPSS analysis revealed that 55% of patients were transferred to ED within 5 minutes, which shows efficient patient queues and flow management. 64.5% patient’s average LOS was between 40-60 minutes. 71% get the availability of basic facilities in ED. Majority of patients i.e. 96.5% and 90.5%, showed satisfaction with the time spent and treatment given by the doctor. Majority of the patients are satisfied with the services and performance of ED of a tertiary care hospital and 76% patients showed willingness to recommend ED of Government Qatar Hospital, Karachi to others. (shrink)

Although hope is a pervasive concept in cancer treatment, we know little about how ambulatory patients with cancer define or experience hope. We explored hope through semistructured interviews with ten patients with advanced (some curable, some incurable) colon cancer at one Midwestern, university–based cancer center. We conducted a thematic analysis to identify key concepts related to patient perceptions of hope. Although we did ask specifically about hope, patients also often revealed their hopes in response to indirect questions or by telling (...) stories about their cancer experience. We identified four major themes related to hope: 1) hope is essential, 2) a change in perspective, 3) the content of hope, and 4) communicating about hope. The third theme, the content of hope, included three subthemes: a) the desire for normalcy, b) future plans, and c) hope for a cure. We conclude that hope is an essential concept for patients undergoing treatment for cancer as it pertains to their psychological well–being and quality of life, and hope for a cure is not and should not be the only consideration. In a clinical context, the exploration of patients’ hopes and aspirations in light of their cancer diagnosis is important because it provides a frame for understanding their goals for treatment. Exploration of the content of patients’ hope can not only help to illuminate misunderstandings but also clarify how potential treatments may or may not contribute to achieving patients’ goals. (shrink)

Phenomenology informs a number of contemporary attempts to give more weight to the lived experience of patients and overcome the limitations of a one-sidedly biomedical understanding of illness. Susan Bredlau has recently presented a reading of Plato’s dialogue Charmides, which portrays Socrates as a pioneer of the phenomenological approach to illness. I use a critical discussion of Bredlau’s interpretation of the Charmides to show that the phenomenology of illness also has its shortcomings and needs to be complemented by still other (...) approaches. While Bredlau does make a number of highly apt and relevant suggestions as to how a narrow biomedical approach to illness may be corrected, some of which are related to phenomenology, the attribution to Plato’s Socrates of a phenomenological approach is mistaken. Characteristically, Socrates shows little interest in the personal experience of a patient. He is more concerned with the patient’s lifestyle and conduct and so suggests an alternative or complementary perspective, stressing the importance of education and prevention to health care. (shrink)

Much of postmodern philosophy questions the assumptions of Modernity, that period in the history of the Western world since the Enlightment. These assumptions are that truth is discoverable through human reason; that certain knowledge is possible; and furthermore, that such knowledge will provide a basis for the ineluctable progress of Mankind. The Enlightenment project is underwritten by the conviction that knowledge gained through the scientific method is secure. In so far as biomedicine inherits these assumptions it becomes fair game for (...) postmodern deconstruction. Today, perhaps more than ever, plural values compete, and contradictory approaches to health, for instance, garner support and acquire supremacy through consumer choice and media manipulation rather than evidence-based science. Many doctors feel a tension between meeting the needs of the patient face to face, and working towards the broader health needs of the public at large. But if the very foundations of medical science are questioned, by patients, or by doctors themselves, wherein lies the value of their work? This paper examines the issues that the anti-foundationalist thrust of postmodernism raises, in the light of a case of mild hypertension. The strict application of medical protocol, derived from a nomothetic, statistical perspective, seems unlikely to furnish value in the treatment of an individual. The anything goes, consumerist approach, however, fares no better. The author argues that whilst value cannot depend on any rationally predetermined parameters, it can be rescued, and emerges from the process of the meeting with the patient. (shrink)

BackgroundKeeping the patients well and fully informed about diagnosis, prognosis, and treatments is one of the patient’s rights in any healthcare system. Although all healthcare providers have the same viewpoint about rendering the truth in treatment process, sometimes the truth is not told to the patients; that is why the healthcare staff tell “white lie” instead. This study aimed to explore the nurses’ experience of white lies during patient care.MethodsThis qualitative study was conducted from June to December 2018. Eighteen (...) hospital nurses were recruited with maximum variation from ten state-run educational hospitals affiliated to Tehran University of Medical Sciences. Purposeful sampling was used and data were collected by semi-structured interviews that were continued until data saturation. Data were classified and analyzed by content analysis approach.ResultsThe data analysis in this study resulted in four main categories and 11 subcategories. The main categories included hope crisis, bad news, cultural diversity, and nurses’ limited professional competences.ConclusionResults of the present study showed that, white lie told by nurses during patient care may be due to a wide range of patient, nurse and/or organizational related factors. Communication was the main factor that influenced information rendering. Nurses’ communication with patients should be based on mutual respect, trust and adequate cultural knowledge, and also nurses should provide precise information to patients, so that they can make accurate decisions regarding their health care. (shrink)

In Bearing Witness, Courtney S. Campbell draws on his experience as a teacher, scholar, and a bioethics consultant to propose an innovative interpretation of the significance of religious values and traditions for bioethics and health care. The book offers a distinctive exposition of a covenantal ethic of gift-response-responsibility-transformation that informs a quest for meaning in the profound choices that patients, families, and professionals face in creating, sustaining, and ending life. Campbell's account of "bearing witness" offers new understandings of formative ethical (...) concepts, situates medicine as a calling and vocation rooted in concepts of healing, affirms professional commitments of presence for suffering and dying persons, and presents a prophetic critique of medical-assisted death. This book offers compelling critiques of secular models of medical professionalism and of individualistic assumptions that distort the physician-patient relationship. This innovative interpretation bears witness to the relevance of religious perspectives on an array of bioethical issues from new reproductive technologies to genetics to debates over end-of-life ethics and bears witness against the oddities of a market-oriented and consumerist vision of health care that is especially salient for an era of health-care reform. (shrink)

“Evidence based medicine” is often seen as a scientific tool for quality improvement, even though its application requires the combination of scientific facts with value judgments and the costing of different treatments. How this is done depends on whether we approach the problem from the perspective of individual patients, doctors, or public health administrators. Evidence based medicine exerts a fundamental influence on certain key aspects of medical professionalism. Since, when clinical practice guidelines are created, costs affect the content of (...) EBM, EBM inevitably becomes a form of rationing and adopts a public health point of view. This challenges traditional professionalism in much the same way as managed care has done in the US. Here we chart some of these major philosophical issues and show why simple solutions cannot be found. The profession needs to pay more attention to different uses of EBM in order to preserve the good aspects of professionalism. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:From the Patient's Perspective:Engaging With the OtherGiovanni Stanghellini*, MD, DPhil Honoris Causa (bio)Homo homini salusOne century after the first conference gathering first-generation clinical phenomenologists in Zurich in 1922, today's psychiatry is far from exploring phenomena from the patient's perspective—that is, "letting-be" the Other, and "giving or compromising"—that is, engaging with the Other (Doerr-Zegers, 2022).The motto of phenomenology has been since its beginning "To things themselves!". Edmund Husserl—the (...) founder of phenomenology in the field of philosophy—exhorted to go back to the things themselves, that is, to render self-evident in fully fledged intuitions that what is usually given in preformed abstractions like "concepts," "judgments," "truths," and so on (Husserl, 1970).Clinical phenomenology has taken up Husserl's motto and added another: "To understand is to cure." Put together, the result is: "To cure is to understand the things themselves." But what does exactly mean "To the things themselves"? And what does it mean "to understand"? What is the use of understanding in the clinical setting? And, ultimately, what does the "cure" consist of?What Are the "Things Themselves" in PsychiatryIn the clinical setting, the "things themselves" (Stanghellini & Ikkos, in press) are the patients' own experiences, that is the patient's psychopathological world as experienced in the first person's perspective—what clinical phenomenology calls the "phenomena." Clinical phenomenology's very conception of the object of psychiatry, that is the patient's abnormal experiences lived in the first-person perspective and embedded in anomalous forms of consciousness and existential patterns, has been vastly oversimplified by current assessment procedures (Stanghellini, 2013). Today, there is a risk that clinical blinkering results in clinicians being only able to view the symptoms relevant to diagnosis and classification and excludes the scrutiny of the diverse and varied nature of what is really there in the patient's experience—the essential prerequisite to understanding his/her condition (Stanghellini & Broome, 2014). This oversimplification has been reinforced by reliance on techniques (e.g., an emphasis on behavioral symptoms and on reliability rather than validity) that are unable to capture the subtle distinctions [End Page 287] in experience that constitute the essentials of the "things themselves" in psychopathology, and to acknowledge that what the patient manifests is not a series of mutually independent, isolated symptoms, but rather certain meaning-structures of interwoven experiences, beliefs, and actions, all permeated by biographical details (Nordengaard & Parnas, 2013).The Problem of the Causes and Meanings of PhenomenaTo go to the "things themselves"—to "let them be"—we should acknowledge that to understand is neither to interpret nor to explain. It is not to interpret, i.e. to attribute a meaning, that is, to replace a manifest content, considered superficial and misleading, with a latent content, considered profound and authentic. Psychiatry as a branch of bio-medicine (as it is known) does not principally deal with meanings, but certainly not because it aims to the "things themselves." Psychiatry first and foremost deals with the causes of phenomena, that is, it tries to explain (scire per causas)—not to understand. The dream of psychiatry is to trace the causes of the symptoms to neutralize the symptoms in statu nascendi. Psychiatry is (would like to be) a science of the mechanisms leading to the formation of mental symptoms.Compared with the intentions of psychiatry, the intentions of psychological hermeneutics, which deals with revealing the meanings of phenomena, may seem a relief and progress, at least if seen from a "humanitarian" angle. The dream of psychology—or at least of certain psychology (such as that of psychoanalytic inspiration)—is to bring to light the authentic meaning of a symptom. Hermeneutic psychology, for example, a psychoanalytic one, is (would like to be) an archaeology of the symptom, unearthing its profound significance.I am not arguing against explanations and interpretations per se, rather underscoring the way these may stand in the way of engaging with the patient in a third mode of approaching clinical phenomena, that is understanding. Both psychiatry's attempts at explanation and hermeneutic psychology's attempts at interpretation may suffocate... (shrink)

The Scandinavian welfare states are known for their universal access to healthcare; however, health inequalities affecting ethnic minority patients are prevalent. Ethnic minority patients' encounters with healthcare systems are often portrayed as part of a system that represents objectivity and neutrality. However, the Danish healthcare sector is a political apparatus that is affected by policies and conceptualisations. Health policies towards ethnic minorities are analysed using Bacchi's policy analysis, to show how implicit problem representations are translated from political and societal discourses (...) into the Danish healthcare system. Our analysis shows that health policies are based on different ideas of who ethnic minority patients are and what kinds of challenges they entail. Two main issues are raised: First, ethnic minorities are positioned as bearers of ‘culture’ and ‘ethnicity’. These concepts of ‘othering’ become both explanations for and the cause of inappropriate healthcare behaviour. Second, the Scandinavian welfare states are known for their solidarity, collectivism, equality and tolerance, also grounded in a postracial, colour‐blind and noncolonial past ideology that forms the societal self‐image. Combined with the ethical and legal responsibility of healthcare professionals to treat all patients equally, our findings indicate little leeway for addressing the discrimination experienced by ethnic minority patients. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Religion and the Body in Medical ResearchCourtney S. Campbell (bio)AbstractReligious discussion of human organs and tissues has concentrated largely on donation for therapeutic purposes. The retrieval and use of human tissue samples in diagnostic, research, and education contexts have, by contrast, received very little direct theological attention. Initially undertaken at the behest of the National Bioethics Advisory Commission, this essay seeks to explore the theological and religious questions embedded (...) in nontherapeutic use of human tissue. It finds that the “donation paradigm” typically invoked in religious discourse to justify uses of the body for therapeutic reasons is inadequate in the context of nontherapeutic research, while the “resource paradigm” implicit in scientific discourse presumes a reductionist account of the body that runs contrary to important religious values about embodiment. The essay proposes a “contribution paradigm” that provides a religious perspective within which research on human tissue can be both justified and limited.The retrieval and use of human tissue samples for diagnostic, therapeutic, research, and educational purposes represent further developments in scientific study of the human body as a source of medical information. Following the completion of its examination of the ethical and policy issues pertaining to human cloning in the spring of 1997, the National Bioethics Advisory Commission (NBAC) returned to the set of questions for which it had been originally constituted, including ethical issues that arise in human subjects research. One issue that proved controversial for the human genetics subcommittee of NBAC was the scientific, philosophical, and legal status of tissue and other body parts (usually surgical specimens) that had been retrieved from patients (not research subjects) who had given general consent to the use of their body materials for research and educational purposes. The subcommittee addressed questions about the adequacy of general versus specific [End Page 275] consent, the scientific merits of identifiable versus anonymous samples and claims about patient confidentiality, and the justification for patient refusals and requests that the materials be returned to the patient or discarded rather than made available for scientific research. In an effort to better understand the ramifications of research on human tissue, the subcommittee commissioned several background papers that examined these questions from ethical, legal, research, and religious perspectives. What follows is a modified version of the report on religious considerations originally presented to the genetics subcommittee of NBAC.The central question examined in this article is whether tissue banking for purposes of research presents distinctive theological issues or prompts objections from religious communities or scholars. Religious discussion of human organs and tissues has focused largely on donation for therapeutic purposes (what I describe as the “donation paradigm”); hence, there is very little direct consideration of nontherapeutic uses of such tissue. It is possible, however, to describe implications and suggest inferences by considering (1) religious attitudes to the human body and to organs, tissues, and cells removed from the body, and (2) religious discussions of modes of transfer of body parts, such as donations, offerings, sales, and abandonment. By and large, this discussion will reflect themes that emerge from the central Western religious traditions, with some attention given to Eastern and Native perspectives.The Body: Religious Holism, Scientific Reductionism, Private PropertyThe human body as an organic totality has long been the subject of theological reflection and a symbol for religious communities. However, much less attention has been devoted to the religious status of organs, tissues, cells, and DNA. The reflection of religious scholars and communities on the status of body parts has been prompted by the necessity to confront practical questions in personal and public health and in communal life, such as justifications for surgery, autopsies, organ donation, or burial. Scientific and research interest in parts of the body can sometimes conflict with religious values about bodily integrity. Indeed, E. Richard Gold cites the “disparate claims of scientific investigation and religious belief on the body” as the exemplary case of incommensurate values regarding the body. According to Gold (1996, p. 149), “The body, from a scientific viewpoint, is a source of knowledge of physical development, aging, and disease. From a religious perspective, the body is understood [End Page 276] as a sacred object, being created in the image... (shrink)

Objective: To explore the experiences of people with a “terminal illness”, focusing on the patients’ perspective of euthanasia and assisted suicide.Method: A qualitative study using narrative interviews was conducted throughout the UK. The views of the 18 people who discussed euthanasia and assisted suicide were explored. These were drawn from a maximum variation sample, who said that they had a “terminal” illness, malignant or non-malignant.Results: That UK law should be changed to allow assisted suicide or voluntary euthanasia was felt (...) strongly by most people. Those who had seen others die were particularly convinced that this should be a right. Some had multiple reasons, including pain and anticipated pain, fear of indignity, loss of control and cognitive impairment. Those who did not want to be a burden also had other reasons for wanting euthanasia. Suicide was contemplated by a few, who would have preferred a change in the law to allow them to end their lives with medical help and in the company of family or friends. The few who opposed a change in UK law, or who felt ambivalent, focused on involuntary euthanasia, cited religious reasons or worried that new legislation might be open to abuse.Conclusion: Qualitative research conducted on people who know they are nearing death is an important addition to the international debate on euthanasia and assisted suicide. Those who had seen others die were particularly convinced that the law should be changed to allow assisted death. (shrink)

One of the hardest tasks for a physician is to treat and take care of patients suffering from such chronic disease as diabetes. The difficulties arise mainly because the medical treatment and the necessary follow up demand that the physician interfere with, or at least influence, the whole lifestyle of the patient. The diabetic must pursue a distinct way of daily living: he must change his eating habits, go on a diet, create a healthy lifestyle and keep to it. Patients (...) may know about the necessity of being on a diet, but a great number of them don’t have any understanding of such basic terms as “protein”, “carbohydrate”, “lipid”, or even “calorie”, which are essential to an understanding matters to do with diet.1 While it is obvious that scientific and technical terms should be translated into everyday language, and acknowledging that providing patients with information is an essential part of care, it is not possible, and not even necessary to give every piece of information to every patient.Just as with any other chronic disease, a good outcome can only be achieved through a strong commitment to serving the interest of the patient. In order to accomplish this, physicians must be aware of the ethical implications raised by non-compliance. The authors are very much in agreement with the American sociologist, Peter Conrad, who stated that:"From a medical perspective, patients who do not comply with the doctor’s orders are usually seen as deviant, and deviance requires correction. But many chronically ill people view their behavior differently, as a matter of self regulation."He is also right when he states that “compliance” looks very different when seen from the patient’s perspective. As an example, patients might adjust their medication to meet their everyday social needs rather than complying exactly with …. (shrink)

Background Following passage of the Patient Self Determination Act in 1990, health care institutions that receive Medicare and Medicaid funding are required to inform patients of their right to make their health care preferences known through execution of a living will and/or to appoint a surrogate-decision maker. We evaluated the impact of external factors and perceived patient preferences on physicians’ decisions to honor or forgo previously established advance directives (ADs). In addition, physician views regarding legal risk, patients’ ability to comprehend (...) complexities involved with their care, and impact of medical costs related to end-of-life care decisions were explored. Methods Attendees of two Mayo Clinic continuing medical education courses were surveyed. Three scenarios based in part on previously court-litigated matters assessed impact of external factors and perceived patient preferences on physician compliance with patient-articulated wishes regarding resuscitation. General questions measured respondents’ perception of legal risk, concerns over patient knowledge of idiosyncrasies involved with their care, and impact medical costs may have on compliance with patient preferences. Responses indicating strength of agreement or disagreement with statements were treated as ordinal data and analyzed using the Cochran Armitage trend test. Results Three hundred eighty-eight of 951 surveys were completed (41% response rate). Eighty percent reported they were likely to honor a patient’s AD despite its 5 year age. Fewer than half (41%) would honor the AD of a patient in ventricular fibrillation who had expressed a desire to “pass away in peace.” Few (17%) would forgo an AD following a family’s request for continued resuscitative treatment. A majority (52%) considered risk of liability to be lower when maintaining someone alive against their wishes than mistakenly failing to provide resuscitative efforts. A large percentage (74%) disagreed that patients could not appreciate complexities surrounding their care while 69% agreed that costs should never impact a physician’s decision as to whether to comply with a patient’s AD. Conclusions Our findings highlight the impact, albeit small, external factors have on physician AD compliance. Most respondents based their decision on the clinical situation at hand and interpretation of the patient’s initial wishes and preferences expressed by the AD. (shrink)

In this issue of Perspectives in Biology and Medicine, Schneiderman and colleagues critique a recent multi-society policy statement—developed by the American Thoracic Society and endorsed by four other organizations—entitled “Responding to Requests for Potentially Inappropriate Treatment in Intensive Care Units”. The focus of Schneiderman’s critique is the Multiorganization Policy Statement’s choice of the term “potentially inappropriate” to describe a class of interventions that clinicians should resist providing for patients near the end of life, even when patients or their families request (...) or demand them.1 Schneiderman and colleagues argue that the term... (shrink)

Written from the perspective of philosophy of liberation, this essay holds that the reform of basic human relationships and their cultural instantiation(s) is central to all serious societal change. The essay analyzes naive, mythological, and critical consciousness. It examines how these modes of consciousness are embodied in the health delivery system and then describes areas where practitioners and patients of critical consciousness might work for greater humanization of health care.

For over a decade, managed care has profoundly altered how healthcare is delivered in the United States. There have been concerns that the patient-physician relationship may be undermined by various aspects of managed care, such as restrictions on physician choice, productivity requirements that limit the time physicians may spend with patients, and the use of compensation formulas that reward physicians for healthcare dollars not spent. We have previously published data on the effects of managed care on the physician-patient relationship from (...) the physician's perspective. In 1999, we collected data on the impact of managed care arrangements on the physician-patient relationship from the patient's perspective. This article discusses our collective findings. (shrink)

Abstractabstract:William Osler (1849–1919) is often considered the most influential physician in the emergence of science-based medicine. However, his approach to clinical medicine tends to be misunderstood, and its relevance to psychiatry has not been explored systematically. Osler's approach to the patient had four components: biological reductionism about disease, a scientific approach to clinical diagnosis, therapeutic conservatism, and a humanistic approach to the person. These concepts conflict with the pragmatic, eclectic, anti-reductionistic assumptions of contemporary psychiatry, as codified in its interpretation of (...) a "biopsychosocial" model. This model leads to unscientific practice, with excessive use of medications given for symptoms, and inattention to identifying and treating diseases. This article suggests that implementing Osler's philosophy of medicine in psychiatry would greatly benefit the latter. It would inaugurate a new "biohumanistic" approach to psychiatry. (shrink)

Rationing healthcare is a difficult task, which includes preventing patients from accessing potentially beneficial treatments. Proponents of implicit rationing argue that politicians cannot resist pressure from strong patient groups for treatments and conclude that physicians should ration without informing patients or the public. The authors subdivide this specific programme of implicit rationing, or “hidden rationing”, into local hidden rationing, unsophisticated global hidden rationing and sophisticated global hidden rationing. They evaluate the appropriateness of these methods of rationing from the perspectives of (...) individual and political autonomy and conclude that local hidden rationing and unsophisticated global hidden rationing clearly violate patients’ individual autonomy, that is, their right to participate in medical decision-making. While sophisticated global hidden rationing avoids this charge, the authors point out that it nonetheless violates the political autonomy of patients, that is, their right to engage in public affairs as citizens. A defence of any of the forms of hidden rationing is therefore considered to be incompatible with a defence of autonomy. (shrink)

Background: During the COVID-19 pandemic, frontline workers faced a series of challenges balancing family and work responsibilities. These challenges included making decisions about how to reduce COVID-19 exposure to their families while still carrying out their employment duties and caring for their children. We sought to understand how frontline workers made these decisions and how these decisions impacted their experiences.Methods: Between October 2020 and May 2021, we conducted 61 semi-structured interviews in English or Spanish, with individuals who continued to work (...) outside of the home during the pandemic and had children living at home. Interviews were recorded, transcribed verbatim, and analyzed using abductive methods.Results: Frontline workers experienced moral distress, the inability to act in accordance with their values and obligations because of internal or external constraints. Their moral distress was a result of the tensions they felt as workers and parents, which sometimes led them to feel like they had to compromise on either or both responsibilities. Individuals felt morally conflicted because 1) their COVID-19 work exposures presented risk that often jeopardized their family’s health; 2) their work hours often conflicted with their increased childcare responsibilities; and 3) they felt a duty to their colleagues, patients/customers, and communities to continue to show-up to work.Conclusions: Our findings point to a need to expand the concept of moral distress to include the perspectives of frontline workers outside of the healthcare professions and the fraught decisions that workers make outside of work that may impact their moral distress. Expanding the concept of moral distress also allows for a justice-based framing that can focus attention on the disparities inherent in much frontline work and can justify programmatic recommendations, like increasing paid childcare opportunities, to alleviate moral distress. (shrink)

The number of people who survive critical illness is increasing. In parallel, a growing body of literature reveals a broad range of side-effects following intensive care treatment. Today, more attention is needed to improve the quality of survival. Based on nine individual stories of illness experiences given by participants in two focus groups and one individual interview, this paper elaborates how former critically ill patients craft and recraft their personal stories throughout their illness trajectory. The analysis was conducted from a (...) phenomenological perspective and led to the meaning structure; a quest to find oneself after critical illness. In this structure, illness represented a breakdown of the participants’ lives, forcing them to develop a new understanding of themselves. Despite acute illness, they felt safe in hospital. Coming home, however, meant a constant balancing between health and illness, and being either in or out of control. To gain a deeper understanding of the participants’ narratives of survival, the meaning structure was developed from a phenomenological life world perspective, Heidegger’s concept of homelikeness and Arthur Frank’s typologies of illness narratives. In conclusion listening to and acknowledging the patients’ lived experiences of critical illness may support the patient efforts to establish the newly defined self and hence be vital for recovery. Phenomenology is one approach facilitating care tailored to the patients’ lived experience of critical illness and its aftermaths. (shrink)

Silence has gained a prominent role in the field of psychotherapy because of its potential to facilitate a plethora of therapeutically beneficial processes within patients’ inner dynamics. This study examined the phenomenon from a conversation analytical perspective in order to investigate how silence emerges as an interactional accomplishment and how it attains interactional meaning by the speakers’ adjacent turns. We restricted our attention to one particular sequential context in which a patient’s turn comes to a point of possible (...) completion and receives a continuer by the therapist upon which a substantial silence follows. The data collection consisted of 74 instances of such post-continuer silences. The analysis revealed that silence can retroactively become part of a topic closure sequence, can become shaped as an intra-topic silence, and can be explicitly characterized as an activity in itself that is relevant for the therapy in process. Only in this last case, the absence of talk is actually treated as disruptive to the ongoing talk. Although silence is often seen as a therapeutic instrument that can be implemented intentionally and purposefully, our analysis demonstrated how it is co-constructed by speakers and indexically obtains meaning by adjacent turns of talk. In the ensuing turns, silence indeed shows to facilitate access to the patient’s subjective experience at unconscious levels. (shrink)

Patient ambivalence is a little studied phenomenon. Therefore, the contribution of Moore et al. (2022) about patient ambivalence in medical decision-making is welcome. Also, the idea that ambivalen...

Johnson and Stricker published an opinion piece in the Journal of Medical Ethics presenting their perspective on the 2008 agreement between the Infectious Diseases Society of America (IDSA) and the Connecticut Attorney General with regard to the 2006 IDSA treatment guideline for Lyme disease. Their writings indicate that these authors hold unconventional views of a relatively common tick-transmitted bacterial infection caused by the spirochete Borrelia burgdorferi. Therefore, it should come as no surprise that their opinions would clash with the (...) IDSA's evidence-based guidelines for the diagnosis and treatment of Lyme disease. Their allegations of conflict of interest against the IDSA resemble those made against the National Institutes of Health, the Food and Drug Administration and the Centers for Disease Control and Prevention in 2000, which were found to be baseless. It is the responsibility of all physicians and medical scientists to stand up to antiscientific, baseless and unethical attacks on those who support an evidence-based approach to caring for patients. (shrink)

This article explores the patient experience of medically unexplained symptoms (MUS) from an existentialist standpoint. Drawing on the work of Jean-Paul Sartre and Simone de Beauvoir, I explore their concepts of existential situation, existential project, authenticity, and praxis. I then analyze the situation of MUS patients in the current cultural and institutional context, elucidating that a lack of explanation for their symptoms puts MUS patients in an existential bind. I illustrate the effects of the experience of MUS on patients’ existential (...) projects. Last, I develop an ethical response in the existentialist tradition from the perspective of patients, providers, and society at large. I argue that there is a collective responsibility to foster conditions more conducive to authentic patient well-being and to improve the experience of patients with medically unexplained symptoms. (shrink)

Although much has been written about how physicians react to their own illness, the subject of how health-care workers react differently to sick physicians compared to ordinary patients is largely unstudied (Klitzman 2008; Mandell and Spiro 1987; Mullan 1985; Pinner and Miller 1952; Sachs 1989; Schneck 1998). As a senior physician-administrator admitted to my hospital for a major illness, I was treated as a physician-administrator and local celebrity, rather than an ordinary patient, by everybody from physicians to janitors. Positive features (...) of this special treatment included a complimentary private room, a magnificent bouquet of flowers, and great respect by hospital personnel. However, this special treatment .. (shrink)

This paper will examine a sample case encountered by ambulance staff in the context of the basic principles of medical ethics.An accident takes place on an intercity highway. Ambulance staff pick up the injured driver and medical intervention is initiated. The driver suffers from a severe stomach ache, which is also affecting his back. Evaluating the patient, the ambulance doctor suspects that he might be experiencing internal bleeding. For this reason, venous access, in the doctor's opinion, should be achieved and (...) the patient should be quickly started on an intravenous serum. The patient, however, who has so far kept his silence, objects to the administration of the serum. The day this is taking place is within the month of Ramadan and the patient is fasting. The patient states that he is fasting and that his fast will be broken and his religious practice disrupted in the event that the serum is administered. The ambulance doctor informs him that his condition is life-threatening and that the serum must be administered immediately. The patient now takes a more vehement stand. ‘If I am to die, I want to die while I am fasting. Today is Friday and I have always wanted to die on such a holy day,’ he says. The ambulance physician has little time to decide. How should the patient be treated? Which type of behaviour will create the least erosion of his values? (shrink)

Like other Arab countries, Jordan must find ways of responding to the rapid processes of change affecting many aspects of social life. This is particularly urgent in healthcare, where social and technical change is often manifested in tensions about ethical decision-making in the clinic. To explore the attitudes, beliefs and concerns relating to ethical decision-making among health professionals in Jordanian hospitals, a qualitative study was conducted involving face-to-face interviews with medical personnel in four hospitals in Amman, the capital of Jordan. (...) Data were analysed thematically in relation to a pre-existing set of ethical categories. Interviews were conducted with thirty-eight doctors covering most medical specialities. Five major themes emerged from the interviews: ethical awareness, ethical issues, the impact of religion on ethical decision-making, practical and theoretical resources for ethical decision-making, and challenges. While uncertainty was expressed about some aspects of Western approaches to ethics, participants strongly supported adoption of a range of Western bioethical principles, including cultural and ethical diversity, along with adherence to Islamic religious norms. A range of serious ethical challenges facing the Jordanian health system were identified, covering social, legal, managerial, and technical issues. Ethical decision-making in Jordan is complex, having to accommodate the needs of patients, the opinions of doctors and their families, the views of religious authorities, managerial considerations, and both local norms and international standards. Health professionals struggle with three sets of tensions that emerge out of the struggle between traditional, community-embedded forms of social organization and the demands generated by globalization and the influence of Western culture: the tensions between tradition and modernity, conservatism and pragmatism, and religion and secularism. Doctors in Jordan prefer approaches to ethical decision-making that realize a balance between the extremes, although the exact nature of where that balance should lie remains uncertain. (shrink)

Effective medical innovation is a common goal of policymakers, physicians, researchers, and patients both in the private and public sectors. With the recent slowdown in approval of new transformative prescription drugs, many have looked back to the “golden years” of the 1980s and 1990s when numerous breakthrough products emerged. We conducted a qualitative study of innovators directly involved in creation of groundbreaking drugs during that era to determine what made their work successful and how the process of conducting medical innovation (...) has changed over the past 3 decades. Transcripts were analyzed using standard coding techniques and the constant comparative method of qualitative data analysis to identify the positive features of and challenges posed by the past and present therapeutic innovation environments . Interviewees emphasized the continued central role played by individuals and the institutions they were a part of in driving innovation. In addition, respondents discussed the importance of collaboration between individuals and institutions to share resources and expertise. Strong underlying basic science was also cited to be a major contributing factor to the success of an innovation. The climate for modern-day medical innovation involves a greater emphasis on patenting in academia, difficulty negotiating the technology transfer process, and funding constraints. Regulatory demands or reimbursement concerns were not commonly cited as factors that influenced transformative innovation. This study suggests that generating future transformative innovation will require a simplification of the current technology transfer process, continued commitment to basic science research, and policy changes that promote meaningful collaboration between individuals from disparate institutions. (shrink)

The discovery and development of new therapeutics has always been central to improving health worldwide. However, there is ongoing concern regarding the current state of medical innovation. Output from the pharmaceutical industry has been criticized for not being “transformative,” that is, offering substantial improvements in patient outcomes over existing therapeutics. While the cost of drug development continues to rise, breakthrough therapies remain elusive and one half of Phase 3 studies fail. Venture capital, a traditional source of funding for new breakthrough (...) biomedical innovations, has decreased investment by 30% in the biotechnology and medical device sectors from 2007 to 2013. Stakeholders question whether the new drugs approved each year by the FDA —many criticized as marginal improvements over existing therapies — justify the enormous investment. (shrink)