The importance of patient involvement is increasing in healthcare, and initiatives are constantly implemented to reach the ideal of involved and educated patients. This secondary analysis was initially embedded in a randomized controlled study where the aim was to gain insight into perceptions and experiences within a group of women undergoing fertility treatment through two focus group interviews. In this secondary analysis, we investigated how patient involvement was strived for in both clinical practice and research. During the (...) analysis, it became apparent that the women exercised and maintained a clear perspective on their hope for a child, Project Child, while the interviewer pursued a treatment perspective, Project Treatment. Despite different perspectives, the conversation during the interviews seemed effortless, and it became apparent how the interviewer and the participants were actually focusing partly on the same, but primarily on different issues but without addressing or acknowledging this. Knowledge and awareness of the difference in perspectives is important when healthcare professionals seek to involve patients both in clinical practice and in research. Patient involvement in both research and clinical practice has shown to be a challenge and entails that pathways are organized and decisions shared by healthcare professionals. (shrink)

Due to the progress being made in the neurosciences, higher expectations for the use of medication, even against the patient’s will, are arising in mental hospitals. In this article, we will discuss whether the neurosciences and new psychopharmacological solutions really support patients who suffer from mental illnesses. To answer this question, we will focus on the perspective of patients and their experiences with psychiatric (coercive) treatments. The analysis of one person’s story shows that other issues besides appropriate medication are important (...) for recovery from a mental illness. In daily life, issues such as coping, rehabilitation and social support are of major importance for a patient suffering from psychiatric disease. Thus, although progress in the neurosciences is a positive development for clinical practice, it does not mean that (coercive) medication alone will carry a patient into recovery. A patient’s recovery is dependent, not only upon the process of finding the appropriate medication and trust between the psychiatrist and the patient, but also upon relational aspects, such as being recognised as a person, belonging, accepting responsibilities, developing friendships and trusting others. These findings lead to the conclusion that dealing with psychiatric diseases is more complex than what the biomedical model of neuroscience suggests and that one should include the social context of the patient in the recovery process. (shrink)

BackgroundPrevious empirical work among physicians has led us to propose that clinical practice is experienced by clinicians as an engagement-in-the-clinical-situation. In this study, we pursue our exploration of clinical practice ‘on its own terms’ by turning to the experience of patients.MethodsPhenomenological analysis of in-depth individual interviews with 8 patients.ResultsWe describe the patient experience as a set of three motifs: the shock on the realization of the illness, the chaos of the health care environment, and (...) the anchor point provided by an engaged physician. We draw on Heidegger’s notion of solicitude to show that patients are actively ascertaining the physician’s engagement in their care.ConclusionsThese findings lead us to question the classical “dual discourse” of medicine that offers a dichotomous account of clinical practice as the addition of care to cure, art to science, humanism to technique, and person to medical case. We found no such distinctions in our empirical investigation of clinical practice. Rather, in our synthesis, practice appears as a unitary experience. The physician’s solicitude for the patient entrains engagement in the clinical situation. Moreover, the solicitous, engaged physician constitutes an anchor point for the patient. (shrink)

Evidence-based medicine (EBM) has thus far failed to adequately account for the appropriate incorporation of other potential warrants for medical decision making into clinical practice. In particular, EBM has struggled with the value and integration of other kinds of medical knowledge, such as those derived from clinical experience or based on pathophysiologic rationale. The general priority given to empirical evidence derived from clinical research in all EBM approaches is not epistemically tenable. A casuistic alternative to EBM (...) approaches recognizes that five distinct topics, 1) empirical evidence, 2) experiential evidence, 3) pathophysiologic rationale, 4) patient goals and values, and 5) system features are potentially relevant to any clinical decision. No single topic has a general priority over any other and the relative importance of a topic will depend upon the circumstances of the particular case. The skilled clinician must weigh these potentially conflicting evidentiary and non-evidentiary warrants for action, employing both practical and theoretical reasoning, in order to arrive at the best choice for an individual patient. (shrink)

Background Respect is essential to providing high quality healthcare, particularly for groups that are historically marginalized and stigmatized. While ethical principles taught to health professionals focus on patient autonomy as the object of respect for persons, limited studies explore patients’ views of respect. The purpose of this study was to explore the perspectives of a multiculturally diverse group of low-income women living with HIV (WLH) regarding their experience of respect from their medical physicians. Methods We analyzed 57 semi-structured (...) interviews conducted at HIV case management sites in South Florida as part of a larger qualitative study that explored practices facilitating retention and adherence in care. Women were eligible to participate if they identified as African American (n = 28), Hispanic/Latina (n = 22), or Haitian (n = 7). They were asked to describe instances when they were treated with respect by their medical physicians. Interviews were conducted by a fluent research interviewer in either English, Spanish, or Haitian Creole, depending on participant’s language preference. Transcripts were translated, back-translated and reviewed in entirety for any statements or comments about “respect.” After independent coding by 3 investigators, we used a consensual thematic analysis approach to determine themes. Results Results from this study grouped into two overarching classifications: respect manifested in physicians’ orientation towards the patient (i.e., interpersonal behaviors in interactions) and respect in medical professionalism (i.e., clinic procedures and practices). Four main themes emerged regarding respect in provider’s orientation towards the patient: being treated as a person, treated as an equal, treated without blame or prejudice, and treated with concern/emotional support. Two main themes emerged regarding respect as evidenced in medical professionalism: physician availability and considerations of privacy. Conclusions Findings suggest a more robust conception of what ‘respect for persons’ entails in medical ethics for a diverse group of low-income women living with HIV. Findings have implications for broadening areas of focus of future bioethics education, training, and research to include components of interpersonal relationship development, communication, and clinic procedures. We suggest these areas of training may increase respectful medical care experiences and potentially serve to influence persistent and known social and structural determinants of health through provider interactions and health care delivery. (shrink)

The evidence-based practice movement fails to pay attention to and to respect sufficiently the fundamental differences that exist between clinical practice and the kind of research that is modeled on the natural sciences. According to M. Polanyi knowledge, will always have a tacit dimension that is not possible to operationally define. This paper argues that the tacit dimension is especially important in clinical knowledge. This represents a challenge to the dominance of positivism and to the evidence-based practice movement. (...) As psychiatrists, we must be able to attend to the patient's perspective, his subjective experience and context. Clinical practice is a careful balance between dialogue and technique. Evidence-based psychiatry might tilt this balance toward a more technical attitude. This could pose problems, considering the importance of the so-called nonspecific factors in psychotherapy. (shrink)

Physicians commonly recommend ?placebo treatments?, which are not believed to have specific efficacy for the patient's condition. Motivations for placebo treatments include complying with patient expectations and promoting a placebo effect. In this article, we focus on two key empirical questions that must be addressed in order to assess the ethical legitimacy of placebo treatments in clinical practice: 1) do placebo treatments have the potential to produce clinically significant benefit? and 2) can placebo treatments be effective in (...) promoting a therapeutic placebo response without the use of deception? We examine evidence from clinical trials and laboratory experiments bearing on these two questions. The conclusion is reached that based on currently available evidence, it is premature to judge whether placebo treatments are ethically justifiable, with the possible exception of acupuncture for pain relief. (shrink)

Malpractice issues in psychotherapy and psychological treatments refer to the unethical behavior of a psychologist or psychotherapist toward the patient. The current study reviewed complaints directed at psychologists and psychotherapists in Sweden with regard to possible incidents of malpractice. Eligible cases were retrieved from a database managed by the Health and Social Care Inspectorate [Inspektionen för vård och omsorg (IVO)], an administrative authority responsible for the safety and quality of healthcare and social services delivery. These cases were analyzed using (...) thematic analysis. In total, 33 complaints matched the keywords proposed by IVO, and were scrutinized in detail. The cases primarily involved psychiatric care by a psychologist in outpatient settings, although many cases comprised multiple healthcare providers responsible for the patient’s care, or targeted the healthcare unit as a whole. The results demonstrated that different forms of malpractice occur, and can be classified in two general themes, Incorrect administration and implementation and Attitude and behavior, which involve organizational aspects as well as examples of malpractice and unethical behavior. Implications for clinical practice and future research include further training in ethics and malpractice, video recording or auditing sessions, routine outcome monitoring, and providing patients with information on how to file complaints. (shrink)

This paper raises questions about the epistemological foundations of evidence-based medicine . We argue that EBM is based upon reliabilist epistemological assumptions, and that this is appropriate - we should focus on identifying the most reliable processes for generating and collecting medical knowledge. However, we note that this should not be reduced to narrow questions about which research methodologies are the best for gathering evidence. Reliable processes for generating medical evidence might lie outside of formal research methods. We also question (...) the notion of the knower that is assumed by EBM. We argue that EBM assumes an enlightenment conception of knowers as autonomous, substitutable individuals. This conception is troubled by the way that clinicians learn the role of anecdote in health care and the role of patient choice, all of which bring into play features of clinicians and patients as situated individuals with particular backgrounds and experiences. EBM's enlightenment conception of the knower is also troubled by aspects of the way evidence is produced. Given these limitations, we argue that EBM should retain its reliabilist bent, but should look beyond formal research methodologies in identifying processes that yield reliable evidence for clinical practice. We suggest looking to feminist epistemology, with its focus on the standpoints of individual situated knowers, and the role of social context in determining what counts as knowledge. (shrink)

Ethical reasoning and decision-making may be thought of as 'professional skills', and in this sense are as relevant to efficient clinical practice as the biomedical and clinical sciences are to the diagnosis of a patient's problem. Despite this, however, undergraduate medical programmes in ethics tend to focus on the teaching of bioethical theories, concepts and/or prominent ethical issues such as IVF and euthanasia, rather than the use of such ethics knowledge (theories, principles, concepts, rules) to clinical (...) practice. Not surprisingly, many students and clinicians experience considerable difficulty in using what they know about ethics to help them make competent ethical decisions in their day-to-day clinical practice. This paper describes the development of a seminar programme for teaching senior medical students a more systematic approach to ethical reasoning and analysis and clinical decision-making. (shrink)

The development of gene expression profiling and next-generation sequencing technologies have steered oncogenomics to the forefront of precision medicine. This created a need for harmonious cooperation between clinicians and researchers to increase access to precision oncology, despite multiple implementation challenges being encountered. The aim is to apply personalised treatment strategies early in cancer management, targeting tumour subtypes and actionable gene variants within the individual’s broader clinical risk profile and wellbeing. A knowledge-generating database linked to the South African Medical Research (...) Council’s Genomic Centre has been created for the application of personalised medicine, using an integrated service and research approach. Insights gained from patient experiences related to tumour heterogeneity, access to targeted therapies and incidental findings of pathogenic germline variants in tumour DNA, provided practice-changing evidence for the implementation of a cost-minimisation pathology-supported genetic testing strategy. Integrating clinical care with genomic research through data sharing advances personalised medicine and maximises precision oncology benefits. (shrink)

Psychedelic Harm Reduction and Integration is a transtheoretical and transdiagnostic clinical approach to working with patients who are using or considering using psychedelics in any context. The ongoing discussion of psychedelics in academic research and mainstream media, coupled with recent law enforcement deprioritization of psychedelics and compassionate use approvals for psychedelic-assisted therapy, make this model exceedingly timely. Given the prevalence of psychedelic use, the therapeutic potential of psychedelics, and the unique cultural and historical context in which psychedelics are placed, (...) it is important that mental health providers have an understanding of the unique motivations, experiences, and needs of people who use them. PHRI incorporates elements of harm reduction psychotherapy and psychedelic-assisted psychotherapy, and can be applied in both brief and ongoing psychotherapy interactions. PHRI represents a shift away from assessment limited to untoward outcomes of psychedelic use and abstinence-based addiction treatment paradigms and toward a stance of compassionate, destigmatizing acceptance of patients' choices. Considerations for assessment, preparation, and working with difficult experiences are presented. (shrink)

Modern songs, films, novels and daily speech often use heart imagery to illustrate ‘inner self’ experiences, such as deeply felt emotions. Where do these ideas come from and what relevance do they have for medicine today? This article explores some of the key origins and periods of development of heart/‘inner self’ ideas before considering the significance of heart/‘inner self’ interactions in modern clinical practice: from Aristotelian anatomy and the translated Hebrew Scriptures; through Shakespeare, William Harvey and the Protestant Reformation; (...) to theories of emotion and modern-day cardiology. I conclude that heart/‘inner self’ interactions exist in clinically significant ways, but are poorly understood and under-recognised in healthcare settings. Greater integration of cardiovascular and psychosocial medicine would improve patient care. (shrink)

Background: Patient participation in clinical ethics support services has been marked as an important issue. There seems to be a wide variety of practices globally, but extensive theoretical or empirical studies on the matter are missing. Scarce publications indicate that, in Europe, patient participation in CESS varies from region to region, and per type of support. Practices vary from being non-existent, to patients being a full conversation partner. This contrasts with North America, where PP seems more or (...) less standard. While PP seems to be on the rise in Europe, there is no data to confirm this. This study sought a deep understanding of both habits and the attitudes towards PP in the Netherlands, including respondents’ practical and normative perspectives on the matter. Methods and Results: We developed a national survey on PP for Dutch CESS staff. Our survey comprised a total of 25 open and close-ended questions, focused on four topics related to PP goals of CESS, status quo of PP, ideas and ideals concerning PP, and obstacles for PP. Discussion: The four most important findings were that: Patient participation in Dutch CESS is far from standard. Views on patient participation are very much intertwined with the goals of ethics support. Hesitations, fears and perceived obstacles for PP were not on principle and Most respondents see PP as a positive opportunity, yet requiring additional training, practical guidance and experience. Conclusions: Various normative reasons require PP. However, PP seems far from standard and somewhat rare in Dutch CESS settings. Our respondents did not raise many principled objections to PP. Instead, reasons for the lack of PP are intertwined with viewpoints on the goals of CESS, which seemingly focus on supporting health care professionals. Training and practical guidance was thought to be helpful for gaining experience for both CESS staff and HCPs. (shrink)

Clinical ethics has developed significantly in Europe over the past 15 years and remains an evolving process. While sharing our experiences in different European settings, we were surprised to discover marked differences in our practice, especially regarding the position and role of patients. In this paper, we describe these differences, such as patient access to and participation or representation in ethics consults. We propose reasons to explain these differences, hypothesizing that they relate to the historic and sociocultural context (...) of implementation of clinical ethics consultation services (Cecs), as well as the initial aims for which each structure was established. Then, we analyse those differences with common ethical arguments arising in patient involvement. We conclude that there is no unique model of best practice for patient involvement in clinical ethics, as far as Cecs reflect on how to deal with the challenging ethical issues raised by patient role and position. (shrink)

Using a “psychotherapeutic attitude”, as a criterion and measure of the psychiatrist’s involvement in clinical relationship (with the “trial identification” according to Fliess), some phenomenological and epistemological considerations are offered about diagnostic assessments, as a synchronic and diachronic recognising process. Inspired by Gehlen’s notion of “exoneration” (i.e., the reducing and focusing of the perceptive experience as applied to the wealth of the perceptible), this paper examines how the mind of a skilled diagnostician might work. Three levels are explored: (...) firstly, “the symbolic perception”, where perceptive/emotional data derived by “trial identification” and worked through during one’s professional experience, automatically selects wide fields of allusions (e.g., in the psychopathological prefigurations, suggested by the ‘‘contact’’); then, we consider the “exoneration” of scientific hypothesis, which allows the psychiatrist to give a scientifically recognisable form to the first diagnostic outlines gathered in the interpersonal communication; and thirdly, the holistic reflection is examined, which returns the doctor’s focus to the patient’s individual problems, after going through different and, at times, very high inference levels. It is not a question of phases, but of varyingly interwoven moments in the mind of the skilful clinician, which are based on the dialectics of identification/separation. (shrink)

Background: International developments suggest that providing clinical ethics services to help clinicians negotiate ethical issues that arise in clinical practice is beneficial and reflects best practice in promoting high ethical standards and patient-centered care. The aim of this study was to explore the needs and experiences of clinical staff members to inform the development of future clinical ethics support. Methods: Health professionals at a large regional health service completed an online survey containing questions about the (...) frequency of ethical and legal issues encountered in clinical practice, the type of situations that gave rise to the ethical and/or legal uncertainty or concern, how clinicians currently address these issues, and what support would be welcome. Results: The survey was completed by 369 staff members, including 61% with more than 10 years in the profession and 51% in nursing/midwifery. Two-thirds (66%) indicated they often considered ethical implications of their clinical decisions, and half (49%) often considered the legal implications. More than half (58%) were often/occasionally concerned about the ethically right thing to do. Patient requests for borderline treatment (47%), staff disagreements about patient care (48%), and patients declining recommended treatment (54%) were the most frequent reasons given for ethical or legal uncertainty. Sixty-nine percent of respondents indicated that the way their department addressed ethical issues could be improved and 85% agreed that there is a need for more discussion on ethical issues. The majority (82%) of respondents had encountered ethically challenging clinical situations where additional support would have helped. Common approaches to issues were discussion with colleagues/supervisor (91.1%), discussion at handover/group forums (50.8%), and consultation with guidelines/protocols (60.9%). Conclusions: A majority of clinical staff members surveyed have encountered ethically/legally challenging cases daily for which they have often sought additional advice. This study indicates that many clinical staff members would welcome some form of additional clinical ethics support including advice and education. (shrink)

This special issue aims to spotlight the individual, lived experiences of caregivers and those receiving care–areas often overshadowed by clinical and medicalized narratives within clinical ethics. Our aim is to enrich the discourse by incorporating stories and narratives of medical care and challenge existing clinical practices by emphasizing patient and practitioner experiences. Through a blend of clinical and academic insights, this issue provides phenomenological narratives, highlighting the importance of lived experiences in understanding and improving (...) class='Hi'>clinical caregiving practices. The contributions, ranging from theoretical analyses to personal narratives, explore various aspects of caregiving. Each article contributes to a deeper understanding of the phenomenologies of care, advocating for a more inclusive, patient-centered approach in clinical ethics and practice. (shrink)

There is growing evidence demonstrating that nursing students encounter unsafe and poor clinical practice when on clinical placement. The impact on nursing students remains relatively under‐explored, especially in the Australian context. This two‐phased qualitative study used Interpretive Description to explore 53 pre‐registration nursing students’ perceptions and experiences of speaking up for patient safety. Results of the study identified students believe speaking up is the right thing to do, and their professional responsibility. The study results add to previous (...) research by describing the dissonance students experience due to the inconsistencies between what is taught at university and performed in practice. Student's distress arises when observing nurses taking short cuts, justifying such actions and making excuses about poor practice. Students report experiencing dissonance, bewilderment and confusion and at times, anger when observing poor practice. The clinical environment culture influences students’ decisions to speak up or remain silent. Understanding students’ perceptions and responses will promote awareness and discussion essential to the future development of curricula and clinical support strategies that will enable students to speak up. (shrink)

BackgroundGenetic testing presents unique ethical challenges for research and clinical practice, particularly in low-resource settings. To address such challenges, context-specific understanding of ethical, legal and social issues is essential. Return of genetics and genomics research (GGR) results remains an unresolved yet topical issue particularly in African settings that lack appropriate regulation and guidelines. Despite the need to understand what is contextually acceptable, there is a paucity of empirical research and literature on what constitutes appropriate practice with respect to GGR.The (...) study assessed patients’ awareness, experiences and perceptions regarding genetic testing and the return of GGR results in a hypothetical context.MethodsThis cross-sectional study employed a qualitative exploratory approach. Respondents were patients attending the medical outpatient unit of Mulago National Hospital. Three deliberative focus group discussions involving 18 respondents were conducted. Data were analysed through thematic analysis.ResultsThree main themes and several subthemes were identified. Most respondents were aware of genetic testing, supportive of GGR and receiving results. However, only a few had undergone genetic testing due to cost constraints. They articulated the need for adequate information and genetic counselling to inform decision-making. Privacy of results was important to respondents while others were willing to share results.ConclusionThere was general awareness and support for GGR and the return of results. Stigmatisation emerged as a barrier to disclosure of results for some. Global health inequity impacts access and affordability of genetic testing and counselling in Africa and should be addressed as a matter of social justice. (shrink)

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an informed, (...) autonomous decision to be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters. (shrink)

How Doctors Think defines the nature and importance of clinical judgment. Although physicians make use of science, this book argues that medicine is not itself a science but rather an interpretive practice that relies on clinical reasoning. A physician looks at the patient's history along with the presenting physical signs and symptoms and juxtaposes these with clinical experience and empirical studies to construct a tentative account of the illness. How Doctors Think is divided into four (...) parts. Part one introduces the concept of medicine as a practice rather than a science; part two discusses the idea of causation; part three delves into the process of forming clinical judgment; and part four considers clinical judgment within the uncertain nature of medicine itself. In How Doctors Think, Montgomery contends that assuming medicine is strictly a science can have adverse side effects, and suggests reducing these by recognizing the vital role of clinical judgment. (shrink)

_2015 Gradiva Award Winner_ _Clinical Implications of the Psychoanalyst’s Life Experience_ explores how leaders in the fields of psychoanalysis and psychotherapy address the phenomena of the psychoanalyst’s personal life and psychology. In this edited book, each author describes pivotal childhood and adult life events and crises that have contributed to personality formation, personal and professional functioning, choices of theoretical positions, and clinical technique. By expanding psychoanalytic study beyond clinical theory and technique to include a more careful examination of (...) the psychoanalyst’s life events and other subjective phenomena, readers will have an opportunity to focus on specific ways in which these events and crises affect the tenor of the therapist’s presence in the consulting room, and how these occurrences affect clinical choices. Chapters cover a broad range of topics including illness, adoption, sexual identity and experience, trauma, surviving the death of one’s own analyst, working during 9/11, cross cultural issues, growing up in a communist household, and other family dynamics. Throughout, _Steven Kuchuck_ shows how contemporary psychoanalysis teaches that it is only by acknowledging the therapist’s life experience and resulting psychological makeup that analysts can be most effective in helping their patients. However, to date, few articles and fewer books have been entirely devoted to this topic. _Clinical Implications of the Psychoanalyst’s Life Experience_ forges new ground in exploring these under-researched areas. It will be essential reading for practicing psychoanalysts, psychotherapists, psychologists, social workers, those working in other mental health fields and graduate students alike. (shrink)

In the past 50 years, an ethical-legal boundary has been drawn between treatment and research. It is based on the reasoning that the two activities pursue different purposes. Treatment is aimed at achieving optimal therapeutic benefits for the individual patient, whereas the goal of scientific research is to increase knowledge, in the public interest. From this viewpoint, the patient’s experience should be clearly distinguished from that of a participant in a clinical trial. On this premise, two (...) parallel and mutually exclusive regimes have been established. Yet in the case of deep brain stimulation (DBS), this presentation is a poor fit, for both the patient’s lived experience and medical practice and research. The frictions may be explained by the specificities of the treatment (including surgery and medical devices) and of the pathologies concerned (chronic and evolutive), and by the characteristics of the medical team implementing the treatment. These particularities challenge the dominant frame of reference in medical bioethics and cause difficulties for the current legal framework in fulfilling its dual role: to protect patients while supporting the development of innovative treatments. The dominant model is still the clinical trial for medication safety and legal requirements of drug market regulation. However, DBS forces us to reflect on a medical device that is permanently implanted in the brain by highly specialized multi-disciplinary neurosurgical teams, for the treatment of chronic evolutive diseases. These devices demand fine-tuning on a case-by-case basis and there is still a lot to discover about why DBS is effective (or not). As a result, the wall between treatment and research is osmotic: many discoveries are made incidentally, in the course of treatment. The following study begins with these observations, and suggests that we review legal provisions (especially in French and United States law) so that they are better adapted to the first-person needs and experience of the patient undergoing brain stimulation. (shrink)

The importance of the hidden curriculum is recognised as a practical training ground for the absorption of medical ethics by healthcare professionals. Pakistan’s healthcare sector is hampered by the exclusion of ethics from medical and nursing education curricula and the absence of monitoring of ethical violations in the clinical setting. Nurses have significant knowledge of the hidden curriculum taught during clinical practice, due to long working hours in the clinic and front-line interaction with patients and other practitioners.

The paper reports results of the very first survey-based study on the prevalence, frequency and nature of ethical or other non-medical difficulties faced by Polish physicians in their everyday clinical practice. The study involved 521 physicians of various medical specialties, practicing mainly in inpatient healthcare. The study showed that the majority of Polish physicians encounter ethical and other non-medical difficulties in making clinical decisions. However, they confront such difficulties less frequently than their foreign peers. Moreover, Polish doctors indicate (...) different circumstances as a source of the experienced problems. The difficulties most often reported relate to (i) patients (or their proxies) requests for medically non-indicated interventions; (ii) problems with communication with patients (or their proxies) due to the patients’ negative attitude, unwillingness to cooperate, or aggression; and (iii) various difficulties with obtaining informed consent. Polish physicians report difficulties associated with disagreements among care givers or scarcity of resources less frequently than doctors from other countries. The study’s findings provide support for the thesis that a significant portion of Polish physicians still follow a traditional, paternalistic, and hierarchical model of healthcare practice. Instead of promoting patient’s empowerment, engagement, and rights, they often consider these ideas as a threat to physicians’ professional authority and autonomy. The study leads to the conclusion that due to insufficient training in medical ethics, communication skills, and medical law, many Polish physicians lack the knowledge and competence necessary to adequately respond to challenges posed by modern healthcare practice. (shrink)

BackgroundClinical Ethics Support Services have been established to support healthcare professionals in addressing ethically sensitive issues in clinical practice and, in many countries, they are under development. In the context of growing CESS, exploring how healthcare professionals experience and address clinical ethics issues in their daily practice represents a fundamental step to understand their potential needs. This is even more relevant in the context of extremely sensitive diseases, such as cancer. On this basis, we carried out a (...) qualitative study conducting in-depth semi-structured interviews with stakeholders of a major comprehensive cancer centre in Italy, with the twofold aim of investigating what ethical issues arise in the context of clinical oncology and how they are addressed, as well as stakeholders’ expectations about a potential CESS to be implemented within the Institution.MethodsThe study was conducted within the theoretical framework of Grounded Theory. Participants were healthcare professionals and other key stakeholders working within the cancer centre. The semi-structured interview aimed at exploring common ethical aspects of oncology, investigating stakeholders’ professional experience in dealing with clinical ethics issues, their expectations and requests regarding ethics support services. Transcripts of the interviews were coded and analysed according to the principles of Grounded Theory.ResultsTwenty-one stakeholders were interviewed. Our analysis showed a wide consensus on the identification of ethically relevant issues, above all those concerning communication, end-of-life, and resource allocation. The absence of institutional tools or strategies to address and manage ethical issues at the patient bedside emerged, and this is reflected in the widespread request for their development in the future. The ideal support service should be fast and flexible in order to adapt to different needs and clinical cases.ConclusionsThe interviewees showed a limited degree of ‘ethical awareness’: despite having reported many issues in clinical practice, they could hardly identify and describe the ethical aspects, while complaining about a lack of ethical resources in their management. To build a truly effective support service, it therefore seems appropriate to take such context into consideration and address the emerged needs. Ethical sensitivity seems to be key and it becomes even more relevant in critical clinical areas, such as the therapeutic pathways of terminally ill patients. (shrink)

Despite technological innovations, clinical expertise remains the cornerstone of psychiatry. A clinical expert does not only have general textbook knowledge, but is sensitive to what is demanded for the individual patient in a particular situation. A method that can do justice to the subjective and situation-specific nature of clinical expertise is ethnography. Effective deep brain stimulation (DBS) for obsessive-compulsive disorder (OCD) involves an interpretive, evaluative process of optimizing stimulation parameters, which makes it an interesting case to (...) study clinical expertise. The aim of this study is to explore the role of clinical expertise through an ethnography of the particular case of DBS optimization in OCD. In line with the topic of the special issue this article is a part of, we will also use our findings to reflect on ethnography as a method to study complex phenomena like clinical expertise. This ethnography of DBS optimization is based on 18 months of participant observation and nine in-depth interviews with a team of expert clinicians who have been treating over 80 OCD patients since 2005. By repeatedly observing particular situations for an extended period of time, we found that there are recurrent patterns in the ways clinicians interact with patients. These patterns of clinical practice shape the possibilities clinicians have for making sense of DBS-induced changes in patients’ lived experience and behavior. Collective established patterns of clinical practice are dynamic and change under the influence of individual learning experiences in particular situations, opening up new possibilities and challenges. We conclude that patterns of clinical practice and particular situations are mutually constitutive. Ethnography is ideally suited to bring this relation into view thanks to its broad temporal scope and focus on the life-world. Based on our findings, we argue that clinical expertise not only implies skillful engagement with a concrete situation but also with the patterns of clinical practice that shape what is possible in this specific situation. Given this constraining and enabling role of practices, it is important to investigate them in order to find ways to improve diagnostic and therapeutic possibilities. (shrink)

Although science supplies medicine's “gold standard,” knowledge exercised in the care of patients is, like moral knowing, a matter of narrative, practical reason. Physicians draw on case narrative to store experience and to apply and qualify the general rules of medical science. Literature aids in this activity by stimulating moral imagination and by requiring its readers to engage in the retrospective construction of a situated, subjective account of events. Narrative truths are provisional, uncertain, derived from narrators whose standpoints are (...) always situated, particular, and uncertain, but open to comparison and reinterpretation. Reading is thus a model for knowing in both morality and clinical medicine. While principles remain essential to bioethics and science must always inform good clinical practice, the tendency to collapse morality into principles and medicine into science impoverishes both practices. Moral knowing is not separable from clinical judgment. While ethics must be open to discussion and interpretation by patients, families, and society, it is nevertheless substantively and epistemologically an inextricable part of a physician's clinical practice. (shrink)

Our study of queer women patients and their primary health care providers in Halifax, Nova Scotia, reveals a gap between providers’ theoretical knowledge of “cultural competency” and patients’ experience. Drawing on Patricia Benner’s Dreyfusian model of skill acquisition in nursing, we suggest that the dissonance between the anti-heteronormative principles expressed in interviews and the relative absence of skilled anti-heteronormative clinical practice can be understood as a failure to grasp the field of practice as a whole. Moving from “knowing-that” (...) to “knowing-how” in terms of anti-heteronormative clinical skills is not only a desirable epistemological trajectory, we argue, but also a way of understanding better and worse ethical practice. (shrink)

In China's healthcare sector, a popular and socio-culturally distinctive phenomenon known as guanxi jiuyi, whereby patients draw on their guanxi with physicians when seeking healthcare, is thriving. Integrating anthropological investigation with normative inquiry, this paper examines medical guanxi through the lens of patient–physician trust and mistrust. The first-hand empirical data acquired – on the lived experiences and perspectives of both patients and physicians – is based on six months' fieldwork carried out in a county hospital in Guangdong, southern China, (...) which included in-depth interviews with 20 patients and 20 medical professionals. Patients who emphasized the positive effects of guanxi on patient–physician trust believed that it facilitates access to experienced medical specialists, enhances clinical communication, and reduces the financial and medical risks of over diagnosis and overtreatment by physicians. At the same time, these findings reveal patients' strong sense of mistrust, not only towards individual health professionals but also to the medical profession and China's commercialized healthcare industry. While some health professionals in the study responded favourably to medical guanxi, most were opposed to it on the grounds that it undermines professional standards and equitable healthcare. We found that the practice of medical guanxi is not morally justifiable, chiefly because it reinforces the present high levels of patient–physician mistrust and erodes trust between patients and the medical profession as a whole. In China, both the medical profession and the state need to promote patient–physician trust based on medical professionalism and institutional norms, rather than on guanxi or individual relationships. (shrink)

Background:Organ donation and transplantation have made it possible to both save life and to improve the quality of life for a large number of patients. In the last years there has been an increasing gap between the number of patients who need organs and organs available for transplantation, and the focus worldwide has been on how to meet the organ shortage. This also rises some ethical challenges.Objective:The objective of this study was to explore healthcare professionals' experience of ethics related (...) to care and interaction with critically ill patients with severe brain injuries and their families.Research design:A hermeneutic phenomenological approach was used to explore the participants' experiences. Methods for collecting data were a combination of participant observations and in-depth interviews.Participants and research context:Two ICUs in a Norwegian university hospital were recruited for data collection. A total of 12 cases were observed, and 32 of the healthcare professionals involved were interviewed.Ethical considerations:The study was approved by the Regional Committee for Research Ethics. Permission to the study in the ICUs was obtained from the Chief Physician in the two ICUs respectively. The right of the participants was ensured by written, voluntary, and informed consent.Findings:From the thematic analysis, a structure of the participants' experiences emerged as a process. While the patients' condition was clarified through phases of prognostic ambiguity, gradual clarification and prognostic certainty, interaction with the families was characterized by ambiguity that involved withholding. The prognostic process had a great impact on how the healthcare professionals interacted with the family. The interaction challenged the participants' caring values in various ways and captured an important structure in their experiences of the ethical interaction with the patients' families. These challenges distinguish caring for families in donation situations from caring for relatives of critically ill patients in general.Discussion:In the discussion we have illuminated how professional ethics may be threatened by more pragmatic and utilitarian arguments contained in regulations and transplant act.Conclusion:Ethical questions should be discussed more both in educations of healthcare professionals and in clinical practice. (shrink)

Little is known about the consequences of moral distress. The purpose of this study was to identify clinical situations that caused nurses to experience moral distress, to understand the consequences of those situations, and to determine whether nurses would change their practice based on their experiences. The investigation used a descriptive approach. Open-ended surveys were distributed to a convenience sample of 204 critical care nurses employed at a university medical center. The analysis of participants’ responses used an inductive (...) approach and a thematic analysis. Each line of the data was reviewed and coded, and the codes were collapsed into themes. Methodological rigor was established. Forty-nine nurses responded to the survey. The majority of nurses had experienced moral distress, and the majority of situations that caused nurses to experience moral distress were related to end of life. The nurses described negative consequences for themselves, patients, and families. (shrink)

Continuous sedation at the end of life is a practice that has attracted a great deal of attention. An increasing number of guidelines on the proposed correct performance of the practice have been drafted. All of the guidelines stress the importance of using sedation in proportion to the severity of the patient’s symptoms, thus to reduce the patient’s consciousness no more than is absolutely necessary. As different patients can have different experiences of suffering, the amount of suffering should, (...) ideally, be assessed subjectively; that is, via communication with the patient. Continuously sedated patients are often unable to communicate, however, making subjective methods of pain assessment unusable. For these patients, the degree of consciousness is the sole available measure. It therefore seems important to adequately measure how deeply the patient is sedated, thereby allowing sedation to be increased when it is too light and decreased when it is too heavy. This is in accordance with the idea that reducing consciousness is not an ethically neutral act.Although consciousness measuring techniques are a hot topic in anesthesiology, almost no research exists on the use of such techniques in the context of continuous sedation at the end of life. This article aims to review existing techniques to measure consciousness and to evaluate their applicability, efficiency, and invasiveness for patients who are continuously sedated until death.Techniques commonly used to assess the depth of sedation in continuously sedated patients are basic clinical assessment and sedation scales, as they are often considered reliable and noninvasive. These techniques might not be very reliable, however, since it is known that some patients are nonresponsive and yet aware. Moreover, sedation scales require stimulation of the patient (for example prodding, shaking, or providing painful stimuli), and can thus be considered invasive of one’s bodily integrity or dignity. Other techniques, such as EEG (electroencephalography) derivatives, may score better on reliability and invasiveness. Yet these have so far never been compared to sedation scale scores for patients receiving continuous sedation at the end of life.Therefore, we conclude that, for both clinical and ethical reasons, research into the efficiency and applicability of other techniques, such as derivatives of EEG, are urgently needed. (shrink)

Background Protecting a person’s right to privacy and confidentiality is important in healthcare services. As future health professionals, nursing students should bear the same responsibility as qualified health professionals in protecting patient privacy. Objectives To investigate nursing students’ practices of patient privacy protection and to identify factors associated with their practices. Research design A cross-sectional study design was adopted. A two-part survey was used to collect two types of data on nursing students: (1) personal characteristics, including demographics, (...) class='Hi'>clinical experience and use of information and communication technology and social media and (2) practice of patient privacy protection, collected using the Patient Privacy Scale. Participants and research context: A total of 319 nursing students aged 18 or above, studying pre-registration nursing programmes and who had attended at least one block of clinical placement, were recruited from a university in Hong Kong. Ethical considerations The study received ethical approval from the Survey and Behavioural Research Ethics Committee of the Chinese University of Hong Kong. The participants were informed of the study aim and written consent was obtained before completing the survey. Findings: The mean total score on the Patient Privacy Scale was 119.7 out of 135. Nursing students who were regular users of Instagram and those who had never taken photographs with patients and hence did not need to obtain patient consent were associated with better practices of patient privacy protection (higher total scores on the Patient Privacy Scale). Conclusions The findings improve our understanding of nursing students’ practice of patient privacy protection and the associated factors. This will inform the development and revision of current strategies to enhance nursing students’ practice of patient privacy protection, especially their use of social media. (shrink)

Aims and Objectives. This article uses the concept of embodiment to demonstrate a conceptual approach to applied phenomenology. -/- Background. Traditionally, qualitative researchers and healthcare professionals have been taught phenomenological methods, such as the epoché, reduction, or bracketing. These methods are typically construed as a way of avoiding biases so that one may attend to the phenomena in an open and unprejudiced way. However, it has also been argued that qualitative researchers and healthcare professionals can benefit from phenomenology’s well-articulated theoretical (...) framework, which consists of core concepts, such as selfhood, empathy, temporality, spatiality, affectivity, and embodiment. -/- Design. This is a discursive article that demonstrates a conceptual approach to applied phenomenology. -/- Method. To outline and explain this approach to applied phenomenology, the Discussion section walks the reader through four stages of phenomenology, which progress incrementally from the most theoretical to the most practical. -/- Discussion. Part one introduces the philosophical concept of embodiment, which can be applied broadly to any human subject. Part two shows how philosophically trained phenomenologists use the concept of embodiment to describe general features of illness and disability. Part three illustrates how the phenomenological concept of embodiment can inform empirical qualitative studies and reflects on the challenges of integrating philosophy and qualitative research. Part four turns to phenomenology’s application in clinical practice and outlines a workshop model that guides clinicians through the process of using phenomenological concepts to better understand patient experience. -/- Conclusion and Relevance to Clinical Practice. A conceptual approach to applied phenomenology provides a valuable alternative to traditional methodological approaches. Phenomenological concepts provide a foundation for better understanding patient experience in both qualitative health research and clinical practice, and therefore provide resources for enhancing patient care. (shrink)

BackgroundDespite consensus about the importance of implementing shared decision-making (SDM) in clinical practice, this ideal is inconsistently enacted today. Evidence shows that SDM practices differ in the degree of involvement of patients or family members, or in the amount of medical information disclosed to patients in order to “share” meaningfully in treatment decisions. Little is known on which representations and moral justifications physicians hold when realizing SDM. This study explored physicians’ experiences of SDM in the management of paediatric patients (...) with prolonged disorders of consciousness (PDOC). Specifically, we focused on physicians’ SDM approaches, representations, and ethical justifications for engaging in SDM.MethodsWe used a qualitative approach to explore the SDM experiences of 13 ICU physicians, paediatricians, and neurologists based in Switzerland who have been or were involved in the care of paediatric patients living with PDOC. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data were analysed through thematic analysis.ResultsWe found that participants followed three main decision-making approaches: the “brakes” approach, characterized by maximized family’s decisional freedom, though conditional to physician’s judgment regarding the medical appropriateness of a treatment; the “orchestra director” approach, characterized by a multi-step decision-making process led by the main physician aimed at eliciting the voices of the care team members and of the family; and the “sunbeams” approach, characterized by a process oriented to reach consensus with family members through dialogue, where the virtues of the physician are key to guide the process. We also found that participants differed in the moral justifications sustaining each approach, citing the duty to respect parental autonomy, to invest in an ethics of care, and to employ physicians’ virtues to guide the decision-making process.ConclusionOur results show that physicians come to perform SDM in different ways, with several representations, and distinct ethical justifications. SDM training among health care providers should clarify the ductility of SDM and the several ethical motivations underpinning it, rather than insisting on the principle of respect for patient’s autonomy as its only moral foundation. (shrink)

We will argue here that after more than 30 years of talk, theory, and clinical practice, we bioethicists still know far too little about what patients, subjects, and healthcare professionals are up to, morally. Bioethics is still near the beginning in grasping what it means to understand, much less to honor fully, the moral power and perspicacity of those bioethics is designed to serve. This is, of course, a serious charge, but one we will endeavor to show has merit. (...) However, we want to be clear from the start that we do not gainsay the important work that has been done in and through the influence of bioethics, both as a field of practical engagement and as a cultural movement, in improving how healthcare is delivered and how human subjects are treated. Thirty or 40 years—depending on how one marks the beginning point—is a very short time, and it is hard to imagine that wholesale changes, all of them in the right direction, could be the outcome for a field this young. Hence, we do not intend the title, “One Cheer for Bioethics,” as a wholesale indictment, but as an indication that there is a great deal of work yet to be done, and that following the currently dominant direction of the field is not likely to get us there. Our aim is to indicate just where future work should be focused, and to do so we will need to be critical of some of the preoccupations of the last three decades. a. (shrink)

We will argue here that after more than 30 years of talk, theory, and clinical practice, we bioethicists still know far too little about what patients, subjects, and healthcare professionals are up to, morally. Bioethics is still near the beginning in grasping what it means to understand, much less to honor fully, the moral power and perspicacity of those bioethics is designed to serve. This is, of course, a serious charge, but one we will endeavor to show has merit. (...) However, we want to be clear from the start that we do not gainsay the important work that has been done in and through the influence of bioethics, both as a field of practical engagement and as a cultural movement, in improving how healthcare is delivered and how human subjects are treated. Thirty or 40 years—depending on how one marks the beginning point—is a very short time, and it is hard to imagine that wholesale changes, all of them in the right direction, could be the outcome for a field this young. Hence, we do not intend the title, “One Cheer for Bioethics,” as a wholesale indictment, but as an indication that there is a great deal of work yet to be done, and that following the currently dominant direction of the field is not likely to get us there. Our aim is to indicate just where future work should be focused, and to do so we will need to be critical of some of the preoccupations of the last three decades. a. (shrink)

Contemporary scholarship examining clinical outcomes in medical travel for cosmetic surgery identifies cases in which patients traveled abroad for medical procedures and subsequently returned home with infections and other surgical complications. Though there are peer‐reviewed articles identifying patient deaths in cases where patients traveled abroad for commercial kidney transplantation or stem cell injections, no scholarly publications document deaths of patients who traveled abroad for cosmetic surgery or bariatric surgery. Drawing upon news media reports extending from 1993 to 2011, (...) this article identifies and describes twenty‐six reported cases of deaths of individuals who traveled abroad for cosmetic surgery or bariatric surgery. Over half of the reported deaths occurred in two countries. Analysis of these news reports cannot be used to make causal claims about why the patients died. In addition, cases identified in news media accounts do not provide a basis for establishing the relative risk of traveling abroad for care instead of seeking elective cosmetic surgery at domestic health care facilities. Acknowledging these limitations, the case reports suggest the possibility that contemporary peer‐reviewed scholarship is underreporting patient mortality in medical travel. The paper makes a strong case for promoting normative analyses and empirical studies of medical travel. In particular, the paper argues that empirically informed ethical analysis of ‘medical tourism’ will benefit from rigorous studies tracking global flows of medical travelers and the clinical outcomes they experience. The paper contains practical recommendations intended to promote debate concerning how to promote patient safety and quality of care in medical travel. (shrink)

The aim of this study was to get a deeper understanding of student nurses’ experiences of personal caring ethics by reflection on caring encounters with patients in clinical practice, ethical caring ideals, ethical problems, and sources for inner strength that give courage to practice good caring. In all, 24 Scandinavian student nurses participated voluntarily in an interview study. The interviews were analyzed within a phenomenological–hermeneutical approach and revealed three themes. The students found themselves in two different states of vulnerability: (...) one in which they were overwhelmed by their vulnerability and began to suffer themselves and the other where their vulnerability became a source of development with focus on the patient. The students’ ethical caring ideals served as fixed reference points in their ethical development, but their ideals were at risk of decline. The students reflected on the barriers for performing ethical care and nurtured their ethical ideals by providing ethical care in secret. Caring in secret occurred also when student nurses did not experience a shared ethos. (shrink)