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)

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)

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...

I am a 40-year-old woman with lived experience of mental ill health and experience of the services and support available for patients. I accessed support from my teenage years until the present day...

The aim of this study was to understand how nurses experience patients’ dignity in Swedish medical wards. A hermeneutic approach and Flanagan’s critical incident technique were used for data collection. Twelve nurses took part in the study. The data were analysed using hermeneutic text interpretation. The findings show that the nurses who wanted to preserve patients’ dignity by seeing them as fellow beings protected the patients by stopping other nurses from performing unethical acts. They regard patients as fellow human beings, (...) friends, and unique persons with their own history, and have the courage to see when patients’ dignity is violated, although this is something they do not wish to see because it makes them feel bad. Nurses do not have the right to deny patients their dignity or value as human beings. The new understanding arrived at by the hermeneutic interpretation is that care in professional nursing must be focused on taking responsibility for and protecting patients’ dignity. (shrink)

The debate and implementation of Clinical Ethics Consultation is still in its beginnings in Europe and the issue of the patient's perspective has been neglected so far, especially at the theoretical and methodological level. At the practical level, recommendations about the involvement of the patient or his/her relatives are missing, reflecting the general lack of quality and practice standards in CEC. Balance of perspectives is a challenge in any interpersonal consultation, which has led to great efforts to develop (...) “technical”approaches, e.g., in psychological counseling or psychotherapeutic treatment. In ethics, unbalance or partiality is a matter of justice and has provoked significant theoretical work, also relevant for practical medical ethics. A lack of balance seems to be particularly serious in those situations, where ethical conflict is triggering a consultation and where the “parties” involved may try to persuade the consultant that their particular opinion is the most convincing; but to our knowledge the connection between patient/relatives involvement and balance has not yet been discussed in the context of CEC. Central questions of access and involvement of the patient and his/her relatives will be analysed and discussed regarding the challenge of balance and the adequate role or attitude of a Clinical Ethics Consultant. It is argued that the Clinical Ethics Consultant should have a methodological awareness regarding the concepts of “neutrality” versus “advocacy” in his/her role and try to achieve a balanced procedure that allows for an optimum of change of perspectives. The argumentation is developed along the narrative of a real case study. Recommendations concerning the involvement of the patient or the relatives are formulated for the practice of CEC. (shrink)

Washington University v. Catalona revolves around ownership of tissue samples provided by patients for research purposes, raising significant ethical and legal questions concerning patient rights, current human research practices, and the treatment of samples as capital resources by the research institution.

Rufus of Ephesus's treatise Quaestiones Medicinales is unique in the known corpus of ancient medical writing. It has been taken for a procedural handbook serving an essentially operational purpose. But with its insistent message that doctors cannot properly understand and treat illnesses unless they supplement their own knowledge by questioning patients, and its distinct appreciation of the singularity of each patient's experience, Rufus's work shows itself to be no mere handbook but a treatise about the place of questioning in (...) the clinical encounter. This paper concentrates on two aspects of Rufus's thought that are unusual by comparison with other ancient medical texts: his distinctively person-centred rather than disease-based concept of questioning, and his extension of ‘habits’ beyond the dietary and occupational to include an indeterminate range of individual characteristics whose relevance to illness is not immediately obvious. In his quest for subjective information to set alongside ob.. (shrink)

This paper discusses the role that the personal history plays in a patient’s perception of his or her own illness in the light of the patient’s own personal history. It demonstrates the regrettable modern tendency to regards the patient as the “bearer of a disease” rather than as a human being with personal values and experiences into which their current illness needs to be integrated. I illustrate my point by an exchange between a student and an “attending” and the “attending” (...) and the patient. It represents only one out of unfortunately many such instances in which the pressures of “managed care” and “efficiency” have made truly knowing the patient as an individual with life experiences and personal values much more difficult. (shrink)

Background: As a fundamental human right in healthcare, informational privacy creates the foundation for patient’s safety and the quality of care. However, its realization can be a challenge in prehospital emergency care, considering the nature of the work. Objectives: To describe patient’s informational privacy, its realization, and the factors related to the realization in prehospital emergency care from the perspective of paramedics. Research design: A descriptive questionnaire study was conducted. The data were analyzed with inductive content analysis. Participants and (...) research context: The participants (n = 26) were paramedics in one of the 22 rescue departments in Finland. Ethical considerations: The study received ethical approval from the ethics committee of the University of Turku (Finland). Permission for the study was given by the collaborating rescue department. Findings: Paramedics described patient’s informational privacy as patients’ right to their own health records, as protection of the patient’s health records, and as comprehensive respect of the patient’s privacy by the persons involved in the patient’s care. In general, informational privacy was described as being realized regarding confidentiality, reporting, and maintaining the patient’s health records. However, it was also described as being dependent on the context, and some areas in need of improvement were identified. Promoting and preventing factors related to the realization were also identified. The promoting factors were paramedics’ professional activity, environment, training, and guidelines. The preventing factors were the nature of the work, paramedics’ attitudes, and the lack of knowledge concerning informational privacy among paramedics, the collaborating authority, patients, and relatives. Discussion and conclusion: Paramedics had a multidimensional understanding of informational privacy and the factors related to its realization. However, its realization varies, and more research and education are therefore needed to enhance the realization and to provide equal and high-quality care for all the patients in prehospital emergency care. (shrink)

Deprivation of liberty in psychiatric hospitals is common world-wide. The aim of this study was to find out whether patients had experienced deprivation of their liberty during psychiatric hospitalization and to explore their views about it. Patients (n = 51) in two acute psychiatric inpatient wards were interviewed in 2001. They were asked to describe in their own words their experiences of being deprived of their liberty. The data were analysed by inductive content analysis. The types of deprivation of liberty (...) in psychiatric hospital care reported by these patients were: restrictions on leaving the ward and on communication, confiscation of property, and various coercive measures. The patients' experiences of being deprived of their liberty were negative, although some saw the rationale for using these interventions, considering them as part of hospital care. (shrink)

This is a response to Dr Charlotte Rosalind Blease's paper ‘Electroconvulsive Therapy (ECT), the Placebo Effect and Informed Consent’, written by Julie K. Hersh who has had ECT. Hersh argues that placebo effect is impossible to prove without endangering the lives of participants in the study. In addition, informing potential ECT patients of unproven placebo effect could discourage patients from using a procedure that from experience has proven highly effective.

Every person in the course of his or her life has some contact with the medical profession. And in recent years that profession has been revolutionised in the fields of research, of technology and of practice. Hardly has one advance been declared than it is superseded by another. At the same time, while community attitudes themselves change, group practices have taken some weight from doctors but perhaps have diminished the doctor/ patient relationship of previous years. Another change in the oversight (...) of the medical profession has been the growth of what is called medical ethics. What, for example, is the amount of information a doctor should give a patient prior to performing an experimental procedure? Amongst all these changes there are still fundamental issues where doctors have to use their personal judgment as to what to do or what to say. For Max Griffiths this is where ethical considerations become matters of medical morality. He outlines a broad range of situations which frequently confront both doctor and patient, requiring sympathetic understanding on each side. Some of these arise out of the radical changes which have occurred in community attitudes and practices. Abortion and euthanasia are two important examples. Others range from growing pains and teenage trauma to ageing and dealing with dying and with loss. From his extensive associations with patients in a wide variety of situations the author tackles those issues which demonstrate what makes a good doctor. The result is a book that is for doctors and patients alike. Max Griffiths' involvement in medical matters range from responsibility for outback hospitals in places like Birdsville, Oodnadatta, Halls Creek and Fitzroy Crossing to long term membership of the board of the Austin Hospital in Melbourne. In this latter capacity he chaired committees responsible for the oversight of medical research, especially the protection of patients' rights. He was also involved in similar committees at the Royal Children's Hospital in Melbourne and the Royal Darwin Hospital. As a long term minister of religion his visits to his parishioners both at home and in hospitals gave him a deep insight into their anxieties. He was also a foundation member of Ronald McDonald House and chairman of several institutions engaged in the care of children with disabilities. [Subject: Sociology, Health Care, Medical Ethics]. (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.

Background: Maintaining patient’s dignity in intensive care units is difficult because of the unique conditions of both critically-ill patients and intensive care units. Objectives: The aim of this study was to uncover the cultural factors that impeded maintaining patients’ dignity in the cardiac surgery intensive care unit. Research Design: The study was conducted using a critical ethnographic method proposed by Carspecken. Participants and research context: Participants included all physicians, nurses and staffs working in the study setting (two cardiac surgery intensive (...) care units). Data collection methods included participant observations, formal and informal interviews, and documents assessment. In total, 200 hours of observation and 30 interviews were performed. Data were analyzed to uncover tacit cultural knowledge and to help healthcare providers to reconstruct the culture of their workplace. Ethical Consideration: Ethical approval for the study from Ethics committee of Isfahan University of Medical Sciences was obtained. Findings: The findings of the study fell into the following main themes: “Presence: the guarantee for giving enough attention to patients’ self-esteem”, “Instrumental and objectified attitudes”, “Adherence to the human equality principle: value-action gap”, “Paternalistic conduct”, “Improper language”, and “Non-interactive communication”. The final assertion was “Reductionism as a major barrier to the maintaining of patient’s dignity”. Discussion: The prevailing atmosphere in subculture of the CSICU was reductionism and paternalism. This key finding is part of the biomedical discourse. As a matter of fact, it is in contrast with dignified care because the latter necessitate holistic attitudes and approaches. Conclusion: Changing an ICU culture is not easy; but through increasing awareness and critical self-reflections, the nurses, physicians and other healthcare providers, may be able to reaffirm dignified care and cure in their therapeutic relationships. (shrink)

The face of cancer treatment is changing and the patient is both living longer and is increasingly able to articulate the problems of painful illness and look for solutions to problems which cannot be solved by technological advances. The cancer patient, like others, is looking towards the self-help movement to help him achieve a better quality of life. The doctor-patient relationship can be improved for both by a franker look at the present situation, the needs of the patient, the family, (...) and those without family, especially in relation to cancer and its cultural connotations. Self-help groups provide the support so often lacking in cancer management (including continuity), and a peer group within which adjustment needed to bring about the change in lifestyle required is achieved. Death need not be a word which is taboo, nor cancer a word which means Death. This is useful for doctor and patient alike. (shrink)

The question of how psychoanalysts are affected by their patients is of perennial interest. Edward Glover posed the question in an informal survey in 1940, but little came of his efforts. Now, more than half a century later, Judy Kantrowitz rigorously explores this issue on the basis of a unique research project that obtained data from 399 fully trained analysts. These survey responses included 194 reported clinical examples and 26 extended case commentaries on analyst change. Kantrowitz begins _The Patient's (...) Impact on the Analyst_ by documenting how the process of analysis fosters an interactional process out of which patient and analyst alike experience therapeutic effects. Then, drawing on the clinical examples provided by her survey respondents, she offers a detailed exploration of the ways in which clinically triggered self-reflection represents a continuation of the analyst's own personal understanding and growth. Finally, she incorporates these research findings into theoretical reflections on how analysts obtain and integrate self-knowledge in the course of their ongoing clinical work. This book is a pioneering effort to understand the therapeutic process from the perspective of its impact on the analyst. It provides an enlarged framework of comprehension for recent discussions of self-analysis, countertransference, interaction, and mutuality in the analytic process. Combining a wealth of experiential insight with thoughtful commentary and synthesis, it will sharpen analysts' awareness of how they work and how they are affected by their work. (shrink)

The living man is thus bound within a net of epistemological and ontological premises which—regardless of ultimate truth or falsity—become partially self-validating for him. (Bateson 2000, 314)Epis...

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)

Intensive Care Unit (ICU) patients not only require life-sustaining treatments but also the preservation of their psychological well-being and dignity, and ICU nurses face heavy work pressure, focusing more on life-sustaining treatments for patients, while the patient’s psychological experiences are often overlooked. This article aims to explore the issue of nurse-led patient dignity preservation in the ICU from China. Reflection is a process of deep thinking and examining one’s actions, experiences, perspectives, or emotions. It involves retrospectively reviewing, analyzing, and evaluating (...) past events to gain insights, understanding, and personal growth. Through reflection, individuals can consider whether their actions align with their values and goals and whether they can learn valuable lessons from them. This article discusses the preservation of patient dignity in the ICU from China based on Taylor’s Emancipatory Reflection Model, which involves four steps: constructing, deconstructing, confronting, and reconstructing. The process of reflection incorporates theories such as Maslow’s Hierarchy of Needs, Comfort Theory, and the style of Paternalistic Decision-making. This study is of great significance in enhancing Chinese nurse's attention to patient dignity, improving the inpatient experience of ICU patients, and enhancing the quality of nursing practice by critically examining current nursing practices in China and providing improvement recommendations. (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)

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by this engagement from patients from the perspectives of research, organizational/quality improvement practices, and patient experiences, while offering preliminary recommendations as to how to address them. We identified three broad categories of ethical issues (...) that intersect between the different types of patient engagement: (1) establishing a shared vision about goals of patient engagement and respective roles; (2) the process and method of engaging with patients; and (3) practical aspects of patient engagement. To explain these issues, we build from our personal, professional, and academic experiences, as well as traditions such as pragmatism and hermeneutics that stress the importance of participation, empowerment, and engagement. Patient engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. Some lessons from the literature on the ethics of participatory research can be translated to organizational and quality improvement practices. (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)

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)

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)

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)

Background: The families of brain-dead patients have a significant role in the process of decision making for organ donation. Organ donation is a traumatic experience. The ethical responsibility of healthcare systems respecting organ donation is far beyond the phase of decision making for donation. The principles of donation-related ethics require healthcare providers and organ procurement organizations to respect donor families and protect them against any probable harm. Given the difficult and traumatic nature of donation-related experience, understanding the outcomes of donation (...) appears crucial. Objective: The aim of this study was to explore the outcomes of organ donation for the families of brain-dead patients. Methods: This was a qualitative descriptive study to which a purposeful sample of 19 donor family members were recruited. Data were collected through holding in-depth semi-structured interviews with the participants. Data analysis was performed by following the qualitative content analysis approach developed by Elo and Kyngäs. Findings: The main category of the data was “Decision to organ donation: a challenge from conflict to transcendence.” This main category consisted of 10 subcategories and 3 general categories. The general categories were “challenging outcomes,” “reassuring outcomes,” and “transcending outcomes.” Ethical considerations: The study was approved by the regional ethical review board. The ethical principles of informed consent, confidentiality, and non-identification were used. Conclusion: Donor families experience different challenges which range from conflict and doubtfulness to confidence, satisfaction, and transcendence. Healthcare providers and organ procurers should not discontinue care and support provision to donor families after obtaining their consent to donate because the post-decision phase is also associated with different complexities and difficulties with which donor families may not be able to cope effectively. In order to help donor families achieve positive outcomes from the tragedy of significant loss, healthcare professionals need to facilitate the process of achieving confidence and transcendence by them. (shrink)

Rationing in healthcare remains very much a taboo topic. Before COVID-19, it rarely received public attention, even when it occurred in everyday practices, mainly in the form of implicit rationing, as it continues to do today. There are different definitions, types and levels of healthcare rationing, according to different perspectives. With the aim of contributing to a more coherent debate on such a highly emotional healthcare issue as rationing, here are provided a number of reflections from a patient advocate (...) class='Hi'>perspective which are specifically focused on bedside rationing, the most troublesome level, both for patients and clinicians, particularly in regard to cancer care. Oncology, with its numerous expensive therapies and increasing number of patients, is undeniably one of the main areas contributing to the increase in healthcare costs. However, the fixed budgets of today's publicly financed health systems cannot allow unlimited access to the potentially beneficial treatments to all patients. Bedside rationing constitutes the last phase of many decision-making processes occurring at different interrelated levels (macro-levels), both inside and outside healthcare systems, which implicitly and inevitably result in a bottleneck determined by the upstream decisions themselves. Shifting from implicit to explicit bedside rationing essentially means moving from a paternalistic to a citizen-before-patient approach; this implies, first of all, a cultural change. Practical bedside rationing is an ethically complex topic, but one that needs to be urgently addressed in a transparent and open debate. In this scenario, the oncological community – patients, patient advocates and clinicians – can and should play an important role. (shrink)

Structured interviews were held with 149 registered nurses in seven countries in America, Asia, Australia and Europe concerning the feeding of severely demented patients who do not accept food. The most common reasons for nurses being willing to change their decision to feed or not to feed were an order from the medical head, a request from the patient's husband and/or the staff meeting. There was a connection between the willingness to feed and the ranking of ethical principles. Nurses (...) who were most prone to feed the patient most often gave a high rank to the ethical principle of sanctity of life, while those who primarily chose not to feed the patient gave a high rank to the ethical principle of autonomy. All nurses stressed the ethical principle of beneficence. Des interviews structurés ont eu lieu avec 149 infirmiers/ères dans sept pays en Amérique, Asie, Australie et Europe concernant l'alimentation des malades gravement dément qui refusent de manger. La raison la plus générale pour des infirmiers/ères d'être prêt à changer leures décisions de donner à manger ou non sont: un ordre du médecin, la demande du mari de la malade ou de la réunion du personnel. Il y avait un lien entre la volonté de nourir et le rang des principes éthiques. Les infirmiers/ères les plus enclins de nourir la malade le plus souvent donnaient un rang supérieur au principe éthique de la sainteté de vie, pendant que ceux et celles qui choisissaient de ne pas nourrir la malade donnaient un rang supérieur au principe éthique de l'autonomie. Tous insistaient sur l'importance du principe éthique de la bienfaisance. Konstruktive Interviews wurden mit 149 ausgebildeten Krankenschwestern und Pfleger in sieben Ländern in Amerika, Asien, Australien und Europa gehalten über die Ernährung von schwer von Dementia praecox leidenden Patienten, die das Essen verweigern. Die gewöhnlichsten Gründe des Pflegepersonals für die Bereitwilligkeit, ihre Entscheidung, zu ernähren oder nicht, zu ändern, waren Anordnungen vom medizinischen Chef, Anfragen vom Ehemann der Patientin und/oder einer Personalsitzung. Es bestand ein Zusammenhang zwischen der Bereitwilligkeit zur Ernährung und dem Rang der ethischen Prinzipien. Die Pflegenden, die sich am meisten neigten, die Patientin zu ernähren, gaben dem ethischen Prinzip der Heiligkeit des Lebens einen hohen Rang, während die, die meistens vorzogen, die Patientin nicht zu ernähren, gaben dem ethischen Prinzip der Autonomie einen hohen Rang. Alle Pflegenden legten grossen Wert auf das ethische Prinzip der Wohltätigkeit. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Pain in the Patient’s KneeMary Jacobus* (bio)We know very little about pain either.—Sigmund Freud, Inhibitions, Symptoms, and AnxietyPain cannot be absent from the personality.—Wilfred Bion, The Elements of Psycho-AnalysisBetween Therapy and HermeneuticsWhat is the place of a psychoanalysis that exists “between” therapy (considered both as a theory and a practice, but also as a theory of practice) and hermeneutics, or the theory of interpretation and understanding? How do (...) we understand psychoanalytic “understanding” itself, as a mental process that involves both the analyst and the analysand in the analytic encounter? I want to approach these related questions by way of the writing of the British psychoanalyst Wilfred Bion (1897–1979). Bion is best known outside the psychoanalytic profession as a pioneer of the so-called leaderless group and a theorist of group process [see Bion, Experiences in Groups]. But his collected theoretical and clinical oeuvre represents—especially in its “epistemological” period during the early 1960s, from Learning from Experience (1962) to Transformations (1965)—the most systematic, original, and philosophical revision of psychoanalytic theory since Melanie Klein’s controversial development of Freudian ideas during the middle decades of this century.1 Consequently, Bion’s influence pervades, and in some cases underpins, the rethinking of psychoanalytic theory and practice that characterizes British object relations in the wake of Klein. In particular, it gives contemporary post-Kleinian analysis its distinctive focus on (not) learning, (non)meaning, and (un)knowing, with an accompanying emphasis on the destruction of the links that make thought possible, as well as on the importance of being able to learn from experience and being able to bear not knowing. In other words, it brings to the fore difficulties associated specifically with questions involving interpretation and understanding in an analytic context.Bion’s writing is noted for its paradoxical combination of directness and difficulty, and for its emphasis on primitive emotional states and experiences, on the one hand, and epistemology and consciousness, on the other. Rigorous in its clinical focus, it also makes [End Page 99] frequent reference to philosophy, mathematics, and other branches of contemporary science. André Green, in the context of the new impetus that Bion gave to orthodox Kleinianism by linking it back to Freud, suggests that his particular contribution lay in realizing that the unconscious phantasies and archaic anxieties emphasized by Klein coincided with thought processes. Finding in Bion “an author who could measure up to Lacan,” Green saw the two as engaged in the common project of “reformulating psychoanalytic theory within a contemporary epistemological framework.” But for Green, “Lacan made the error of excessive abstraction, whereas Bion, with his constant reference to affect and the process of transformation, is the more authentically intellectual” [10–11].2 Although Bion’s writing is read wherever the theory and practice of British object relations psychoanalysis is seriously taught and studied, for the most part it remains surprisingly unknown within the academy. This is especially the case in America—even when it comes to literary critics and theorists with an interest in the “authentically intellectual,” who are often, by contrast, steeped in Lacan and well versed in recent Continental psychoanalytic writing. If only for this reason, but also because Bion’s work is particularly relevant to issues involving the relation between therapy and hermeneutics, I want to focus on the culminating book of Bion’s “epistemological” period during the early 1960s, Transformations—so called because of Bion’s analogy between the psychoanalyst’s representation of the experience of the analytic encounter and the artist’s transformation of the experience of what he sees.Bion’s writing, although terse and at times humorous, makes considerable demands on the reader, particularly on the capacity of the mind to entertain a new thought or consider it from a radically new perspective. He places pressure on thinking (including his own), as well as attempting to communicate the seeming incomprehensibility or hallucinatory dimensions of psychotic thought processes (which are often continuous with normal thought processes). In what follows, I will address both the kind of communication made by Bion himself—which is subject to its own interpretive difficulties and obscurities—and the relation between therapy... (shrink)

The critical role of surrogates—commonly if erroneously called “Informal caregivers”—has been generally ignored by clinical and bioethical literatures. While assumed to provide no more than ancillary support, these patient representatives directly or indirectly affect patient care to the extent they inhibit or facilitate both home-based care and patient decisions regarding treatment alternatives. Members of this group include relatives and neighbors who may or may not act in consort as advisors, assistants, care providers, and surrogate decisionmakers acting on the patient's (...) behalf with members of the medical community. Not only do they often possess a critical voice strongly influencing both patient care decisions and, after discharge, home care and rehabilitation, this paper argues they do so from a perspective that is often radically different from one endorsed by medical professionals. (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)

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)

Non-Invasive Prenatal Testing is a technology which provides information about fetal genetic characteristics very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women’s social and ethical values. We approach the need for ethical policy-making by studying the (...) use of NIPT and emerging policy in the province of Ontario, Canada. Using an adapted version of constructivist grounded theory, we conducted interviews with 38 women who have had personal experiences with NIPT. We used an iterative process of data collection and analysis and a staged coding strategy to conduct a descriptive analysis of ethics issues identified implicitly and explicitly by women who have been affected by this technology. The findings of this paper focus on current ethical issues for women seeking NIPT, including place in the prenatal pathway, health care provider counselling about the test, industry influence on the diffusion of NIPT, consequences of availability of test results. Other issues gain relevance in the context of future policy decisions regarding NIPT, including funding of NIPT and principles that may govern the expansion of the scope of NIPT. These findings are not an exhaustive list of all the potential ethical issues related to NIPT, but rather a representation of the issues which concern women who have personal experience with this test. Women who have had personal experience with NIPT have concerns and priorities which sometimes contrast dramatically with the theoretical ethics literature. These findings suggest the importance of engaging patients in ethical deliberation about morally complex technologies, and point to the need for more deliberative patient engagement work in this area. (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)

The opioid epidemic has claimed the lives of more than 183,000 individuals since 1999 and is now the leading cause of accidental death in the United States. Meanwhile, rates of incarceration have quadrupled in recent decades, and drug use is the leading cause of incarceration. Medication-assisted treatment or MAT is the gold standard for treatment of opioid use disorder. Incarcerated individuals with opioid use disorder treated with methadone or buprenorphine have a lower risk of overdose, lower rates of hepatitis C (...) transmission, and lower rates of re-incarceration. Despite evidence of improved outcomes, many jails and prisons do not offer MAT to individuals with opioid use disorder. This seems partly due to a scientifically unjustified preference for an abstinence-only treatment approach. The absence of MAT in prisons and jails results in poor outcomes for individuals and poses a public health threat to communities. Furthermore, it disproportionately harms poor communities and communities of color. Health care providers in prisons and jails have an ethical obligation to offer MAT to individuals with opioid use disorder to mitigate risk of infectious diseases, opioid overdose and health disparities associated with incarceration. (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)